1 1 EUCAPA conference 2012, 7th May. 2 Opening: Sean Kelly MEP 3 4 MR O'FLYNN: Good morning all. How are you? I see a few gaps this morning! 5 6 A show of hands, how many of you were at the GAA event last night, the cultural 7 evening? Very good. 8 9 Well I know it was a huge success, there is -- there will be more of that this 10 evening, the banquet at 8 o'clock will also feature a special presentation by Siamsa 11 Tire our national cultural group, so there will be more singing, dancing and more 12 drinking as well! 13 14 So we'll expect a crowd tomorrow morning! But those of you who did enjoy the GAA 15 evening last night, we have a very special guest for you this morning, because our 16 first guest was the boss of that! 17 18 Sean Kelly was the President of the GAA through a very important time in our history, 19 he was the man responsible for the completion of our most iconic stadium, Croke Park, 20 and also the man credited with bringing the GAA into the 21st century, opening the 21 main stadium to the foreign games as we call them, of soccer and rugby! 22 23 These days, after that he was also the executive chairman of the Institute of Sport. 24 These days he has real power! He is a member of the European Parliament, making 25 Ireland's case in Europe. 26 27 He is here to speak to us this morning, we are very, very glad to have him, our MEP, 28 Sean Kelly. 29 30 MR KELLY: (Welcome in Irish). 31 32 So Niall said I have real power, well real power, you must remember there are 754 33 MEPs so we're sharing power together, that's a lot of people sharing the same amount 34 of power. But nevertheless, it is a great honour for me to be here, and I Premier Captioning & Realtime Ltd www.pcr.ie 2 1 congratulate you on a wonderful conference, particularly having so many people from 2 so many different countries, 33 countries, that's a huge number of countries to bring 3 together in the one place, and particularly here in my own town, of Killarney, which 4 of course is the tidiest town in Ireland, won that accolade last year. 5 6 And for the conference I would like to start by complimenting ITT, the Institute of 7 Technology in Tralee, whom I have been involved with over many years in different 8 capacity, and who have done tremendous work, pioneering work, not just imitating what 9 other colleges do, but moving into new areas and finding issues and creating 10 programmes which we're all very proud of, and particularly in the area that we are 11 talking about today, that of physical activity. 12 13 The degree course they created, and of course now I hope that they will be successful 14 in their application to UNESCO because that would give them more focus and more 15 resources to power this whole very important area ahead, and I would like to 16 compliment the President of the college and also my good friend Pat Flanagan. 17 18 Pat of course was an international athlete himself, better known in Kerry though as 19 the trainer of the Kerry football team that won several All-Irelands, now he is going 20 doing it with Waterford, and if he can get Waterford to win a hurling All-Ireland not 21 only would Waterford be happy but all of Ireland would, so we wish you the best of 22 luck in that Pat. 23 24 This is part of a wonderful weekend, actually the night before you arrived the 25 Mayor's Ball was on here in Killarney and the mayor devoted that ball and the money 26 made from it to the Kerry Stars, which is an offshoot of the Special Olympics. 27 28 And it proves the wonderful competitions and the staging of the Special Olympics the 29 way it gelled with people across the country, they have remained still involved in 30 some capacity or other, and they are willing to contribute anything they can. And 31 actually I just became president of the association when the Special Olympics took 32 place a month after I became president, and Niall was talking about the opening in 33 Croke Park, that was the first real opening of Croke Park per se, because prior to 34 that nothing else really had taken place in our stadium, because rules didn't allow Premier Captioning & Realtime Ltd www.pcr.ie 3 1 apart from our own games. 2 3 So the Special Olympics was a special occasion and Mary showed clips from it 4 yesterday and certainly it was something we are all very proud of and it was great to 5 see and as I said there is now great follow on from it. 6 7 Where Europe is concerned, it was ironic that the Special Olympics came into my very 8 first meeting in Europe, because the first meeting I was at when I was elected as an 9 MEP they were discussing the budget for the following year, I was looking down 10 through it and I saw in it preparatory actions in sport 1 million euro, I said 1 11 million euro for 27 countries? I put up my hand and I said I'm proposing 12 million. 12 And the chair a lady Doris Blanck from Germany she said you're new here, a bit naive, 13 you are not going to get 12 million, but if you ask for 6 I'll support you, I said 14 okay I'll ask for 6. 15 16 So we got the six and three of that six went to the Special Olympics for the staging 17 of the Special Olympics in Poland. So I have a close thing with the Special Olympics 18 and I must say I'm very pleased to do so. 19 20 Now in regard to inclusivity in general, but particularly for people with 21 disabilities, I think proven by the grant we gave to Special Olympics that the 22 members of Parliament and I'd say the Commission generally are favourable to create 23 an equal Europe, because really that's what Europe grew out of, two world wars were 24 60 million were killed the idea was to have no more world wars, to come together and 25 try and create prosperity and peace and prosperity means giving everybody an 26 opportunity to have a good quality of life. 27 28 This is something, a reason d'etre that goes through a lot of the thinking and where 29 there are deficiencies, MEPs point them out. For instance we are also as a result of 30 the Lisbon Treaty involved in creating a policy for tourism, one of the aspects we 31 put a lot of emphasis on is tourism for all means, particularly giving those with 32 disabilities, an opportunity to go on holidays. 33 34 One of the things we have said is rather than hotels or some constructers saying this Premier Captioning & Realtime Ltd www.pcr.ie 4 1 is suitable for all sorts of people, that they would ask themselves, it was a point 2 made by our wonderful Minister yesterday Kathleen Lynch when she said nothing about 3 us without us, that they should be consulted before the resources are put in or any 4 facilities are put in regarding what was needed. 5 6 Because 80 million people in Europe have some form of disability or other, and there 7 is a good market there to develop niche tourism if the proper resources and 8 facilities are there and that's something we have included in the programme for 9 tourism which will be coming up. 10 11 The same is true in the creative and cultural industries, we have also been 12 discussing that and we have included there again a special amendment to deal with 13 disabilities and that's very important, and even here in Ireland, in my own 14 organisation the GAA, people like Tim Maher and so forth are busy developing games 15 that suit people with all sorts of disabilities and people from the youngest to the 16 oldest age like wheelchair hurling and so forth the same is true of soccer and all 17 those. 18 19 So there is a lot of focus being made, particularly in my role as an MEP, as I sit on 20 the cultural, education and youth and sports committee and particularly since the 21 coming into force of Lisbon Treaty, the EU has a soft competence for sport, so we can 22 develop a programme, prior to Lisbon Treaty we didn't have that authority now we do. 23 Obviously as a former sportsman myself and former president of the GAA I was in 24 favour of this development and I'm a firm believer in the view that an active 25 sporting population is a healthier, happier population and also more economically 26 viable, that's very important point in this day and age. 27 28 The inclusion of sport as EU competence has given MEPs the opportunity to raise the 29 profile of sport at the EU-level and lobby hard for strong sport budget from 2014 30 onwards, we don't have a sports budget until 2014 which is the next what they call 31 multi-annual financial framework, the budgets for EU, it's 7 year cycles so because 32 Lisbon wasn't passed prior to the previous MFF there was no budget for now, but from 33 2014 on it will be included. 34 Premier Captioning & Realtime Ltd www.pcr.ie 5 1 Personally I was not entirely satisfied with how the sports policy was taking shape 2 on the passing of the treaty, there was a tendency to focus on elite sports, on 3 issues such as match fixing, players agents, online betting, drug taking and so forth 4 and particularly on funding large events like major international events which could 5 easily attract sponsorship in any case. 6 7 It was dominated by the usual suspects who focused on marquee sports and elite level, 8 it was not inclusive of all forms of sport and physical activity and did not focus on 9 the grass-roots. 10 11 So what myself and a number of other MEPs did we formed a group of grass-roots sports 12 and physical activity team that's what we called ourselves. Together we managed to 13 pass a written declaration, requiring the signature of more than half of all MEPs 14 calling for support for grass-roots sports and inclusive physical activity. 15 16 Now a written declaration, if it doesn't get the majority of members to sign it, it 17 falls and the issue falls as well, so the vast majority of written declarations fail 18 to get the majority, but thankfully we campaigned hard, and won an unprecedented 19 victory for a vision of inclusive sport and physical activity for all citizens of 20 Europe. 21 22 We have set out an ambitious target, that is to get 100 million more Europeans more 23 active, more often by 2020. It will form part of what they call the 2020 strategy. 24 25 Currently evidence suggests only two in every five people in Europe is physically 26 active on a regular basis, 200 million out of 500 million European citizens, we want 27 to increase that to three in five citizens hence the 100 million figure. Sport in 28 physical activity should be a right of all groups in society, especially those with 29 disabilities, encouraging participation for people with disabilities should be a 30 simple aim of EU sports policy and it is something I and others are firmly commit to 31 seeking through to fruition. 32 33 This written declaration was successful in that grass-roots sports and inclusive 34 physical activity is now written in the key documents framing the future sports Premier Captioning & Realtime Ltd www.pcr.ie 6 1 policy from the Commission Communication to European Parliaments thesis report only 2 voted through in January, that will be the programme which will be implemented once 3 the multi-annual financial framework is passed from 2014 onwards. 4 5 To implement those ambitious goals we need to give support and encouragement to 6 practical and ambitious initiatives and there is no better example of such an 7 initiative than what we are discussing here this weekend, whether it is such issue as 8 Paralympics, Special Olympics, Surf to Heal, wheelchair hurling, sailing with the 9 deaf and blind and all other activities which we'll be discussing today, involving 10 basketball, dance, etcetera, all those things can now be included in the sports 11 programme at European level. 12 13 I also want to pay particular tribute to the pioneering work of the European 14 inclusion in physical education training project funded by EU and health and leisure 15 department of IT Tralee, this project left a legacy, namely a template for PE 16 teachers across Europe to use to implement an inclusive PE programme for all students 17 and once you have the PE teachers on board then of course the influence is massive, 18 and I think Pat mentioned that initially the first day and I agree 100% with him. 19 20 It is this sort of practical example programme that will pave the way for a bottom 21 up, grass-roots and school led move to increase participation in regular physical 22 activity across Europe. In an age of austerity we must use all such innovative tools 23 to promote a healthy lifestyle for all, to have physical activity as a normal every 24 day part of our daily lives for people of all abilities, young and old. 25 26 I look forward to taking back the positive proposals and conclusions of this 27 conference with me to the European Parliament and you can rest assured that I and my 28 colleagues will be doing everything we can to advocate Adapted Physical Activity, at 29 home in Ireland and across the EU and beyond. 30 31 The EU funding needs to be targeted at aiding and promoting Adapted Physical Activity 32 and I intend to continue raising these issues at EU-level. 33 34 As I said, from 2014 there will be a budget for sport and physical activity but we Premier Captioning & Realtime Ltd www.pcr.ie 7 1 must continue to target all other budget lines as well which are there already, such 2 as Leonardo da Vinci, research funds, structural funds and national funds to develop 3 an inclusive community in Europe. And one such area I think a lot could be done is 4 what they call the Horizon 2020, the Commissioner for Research and Innovation is the 5 Irish commissioner Maire Geoghegan Quinn and she outlined a budget of 80 billion for 6 research and innovation into the future and it's divided into three pillars, one of 7 those pillars is what they call society challenges tool and part of that is the whole 8 health area, and one of the things I will be trying to get emphasis on is to try and 9 put as much as possible into prevention as well as cure, a lot of the funding at 10 EU-level in particular, at the minute in research is going to trying to find cures 11 for diseases, a lot of which could be prevented through physical activity. And I 12 would be hoping to use that opportunity to put as much funding as possible, maybe at 13 least on a 50-50 basis into prevent because if people are leading healthy lifestyles, 14 then the chances of developing so many of these diseases wouldn't be as great. 15 16 So from an economic point of view it makes sense to put as much as possible into 17 prevention, certainly as much as trying to find cures. I'm not saying it isn't as 18 important to find cures, but at the moment I'd say probably 90% is going into trying 19 to find cures and very little physical any going into preventive programmes. I would 20 hope to turn that around, so that in the long term the need for cures won't be as 21 great and people will have a better quality of life, society will be more inclusive 22 and people of all sorts of abilities -- and as the Minister said yesterday we all 23 have some disability or other, it isn't a question of disability it's a question of 24 including everybody from the youngest to the oldest, in a physical activity they 25 enjoy. 26 27 For instance we saw that last night above in the Crokes pitch, I compliment my 28 colleagues here in Killarney for organising it, where we saw participation and people 29 getting involved. Now if you just think those of you who had been up there, when you 30 saw the dancing, which was nice to see, but when you actually got an opportunity to 31 participate yourself, it was much more enjoyable I would say. That's the message we 32 take from it, the same is true for every single person on this planet, if they get an 33 opportunity to be participants more than onlookers, then that will make a real 34 difference to their lives. Premier Captioning & Realtime Ltd www.pcr.ie 8 1 2 So my aim is to have as many people as possible across the EU participants, not 3 onlookers in every form of life and particularly in relation to physical activity. 4 5 So I look forward to getting your views again and as I said bringing them on board, 6 at European level and maybe we might be able, Niall, to utilise more and more power 7 to it across the line. So with that, thank you very much indeed. 8 9 End of Presentation 10 11 MR O'FLYNN: Thank you very much Sean, he has to leave us now, he has to catch a 12 plane in Dublin, but we're very grateful for your presence here in Dublin, Sean Kelly 13 a great friend of CARA and a genuine advocate for disability groups. Sean Kelly 14 everyone. 15 16 Before we carry on, a couple of items of housekeeping, is there a Mr Gomez? The 17 room? 18 19 If there is could you please make your way to the presentation desk you are due to do 20 a parallel session in Malton E in 10 o'clock, in addition there is a schedule change, 21 you can all see it there. Lauren is now presenting at 10 am in Muckross A and Jose 22 Ferraria is now presenting at 10.55 so if you intend going to those sessions please 23 note the changes. 24 25 I mentioned earlier the banquet tonight there are tickets available for those of you 26 who are on day passes here today or anyone who wants to, to get extra tickets for 27 friends, if you want them please just go to Ursula at the presentation desk, you are 28 very welcome, the more the merrier. 29 30 Now our keynote speaker this morning is Dr Jennifer Harris, director of the 31 Inter-disciplinary Disability Research Institute at the University of Dundee in 32 Scotland, Dr Harris is also a visiting Professor of social science at Kings College, 33 London. 34 Premier Captioning & Realtime Ltd www.pcr.ie 9 1 She is here to speak to us today about the rules of engagement, asking the key 2 question; how can people with disabilities be properly engaged in research process? 3 4 Ladies and gentlemen, Dr Jennifer Harris. 5 6 DR HARRIS: Good morning. I'm a little person so you probably can't see me, I'm 7 here! 8 9 Thanks more inviting me, I have to keep an eye the clock, I brought the clock all the 10 way from Scotland! 11 12 Thank you very much for inviting me here, I love Ireland it's a great privilege to be 13 here, it's not my first time in Ireland, I was actually married to an Irish man, who 14 is sadly no longer with us, but I wanted to tell you a wee story about him to start, 15 I haven't got much time but I have to be brief. 16 17 The first time I came to Ireland my partner said to me it's good to see the old sod, 18 I thought he was talking about his father! For those of you as mystified as me I know 19 a lot are, he meant Ireland. I thought of that when I flew in, it's a wonderful 20 place to be back to and indeed, beautiful green country that we all love so much. 21 22 I'm going to talk to you today about research. I don't door research as yet in the 23 sport/Adapted Physical Activity area, I do general disability research and I was 24 asked to talk to you about, specifically about research and what we can learn in 25 practical terms from different approaches to research. 26 27 I'm going to start off by explaining my orientation and why I think my orientation is 28 so important to me, all the work that I do is inspired by the social model of 29 disability. Some of you will know very well about the social model of disability, 30 perhaps others don't. So I'm going to explain that. 31 32 This was an innovation by Mike Oliver in 1990 and he wrote this very influential book 33 called "The Politics of Disablement" and basically what Mike did in that book was he 34 turned the term disability around, and he changed the focus from impairment, the Premier Captioning & Realtime Ltd www.pcr.ie 10 1 condition that the person has, on to the way in which society behaves towards 2 disabled people. 3 4 So for him the term "Disabled person" actually means dis-abled so the person is 5 prevented from full participation in society and that's something we'll all be in 6 tune with here, that we all understand. 7 8 So for me, this term I will use throughout the speech disabled is in that frame, in a 9 social model frame and that has inspired all my work and the work of my colleagues 10 that I have -- I will be showing today. 11 12 The social model was actually revolutionary and it's impact is still felt today, it's 13 still going on and we are still starting to understand the depth of that and now we 14 understand all of this as social exclusion and social justice and these terms are far 15 more applicable to us and we understand them better than we did in 1990, and we can 16 see as other speakers have said, we can see the whole effects in society across the 17 board of the social model in practice. 18 19 Now we've got a lot of slides but you have to understand these are here for me and 20 not for you particularly! So please don't be concerned about the slides, they are 21 things academics rely on as a security blanket, it's all rather sad! 22 23 So why should disabled people care about research? Why should people be 24 participating in research? And I thought about this quite a lot recently and how can 25 active participation in research be performed? And there is a lot of literature on 26 this about how we get people involved in research and how you keep them involved in 27 research. 28 29 It's all about reciprocity, attrition, research fatigue, constantly being asked the 30 same questions by a different group of people and so on, drop out rates and I think 31 that that literature was very interesting, because it can show us the pitfalls if you 32 like of research and if you like, bad research practice. We can learn how not to do 33 research. 34 Premier Captioning & Realtime Ltd www.pcr.ie 11 1 We can turn those things into a positive practice and show how disabled people can 2 obtain better services for example by a good case, a good piece of research. 3 4 So for me at any rate, good research practice is research that has at its heart 5 active participation of disabled people, and my view is that disabled people want to 6 participate in research when the research itself is honest and has integrity and when 7 the products of the research are transparent, so when they can see that there is some 8 purpose and there is some end to this and it's not just more questions and so on and 9 doesn't seem to be going anywhere. So once these things are cleared my view is that 10 disabled people wish to be participating. 11 12 But as part of that researchers have to be honest about what individuals can gain 13 from the research process, and frequently the answer is nothing, or not very much. 14 Now many disabled people that I have worked with, are happy to participate on the 15 grounds that in the future, by doing this research we'll understand things better and 16 we'll be able to produce better services, that's in itself a good motivation, and 17 that's okay, but as researchers, if you are on the other side of the fence, you have 18 to be honest, if that is all that you can offer people, you must be honest. 19 20 So I'm going to illustrate some of these ideas by showing you a few pieces of 21 research that we have done in the institute over the years, the first one of these 22 concerns disabled asylum seekers this was a piece of work undertaken in the Joseph 23 Rowntree Foundation in York around 2000 to 2002 and what happened there was we were 24 looking at a group of people who arguably had never been studied before, in any shape 25 or form, and it was quite a difficult population, even to consider including in 26 research, and the research itself just to run you through some findings here 27 uncovered significant disadvantage and inequality in both housing and welfare receipt 28 in relation to impairment. 29 30 And the problem, the central problem that we had at the beginning of the research was 31 that this term "Disabled" was not being looked at by the immigration services, so 32 they were just ignoring the whole area of disability/Impairment. And a consequence 33 of that was services were not being put in place because nobody knew how many 34 disabled asylum seekers there were and finding out was impossible and often we get Premier Captioning & Realtime Ltd www.pcr.ie 12 1 into these loops saying how many are there we don't know, how can we find out we 2 don't know, we're not keeping statistics -- so it goes around and round like that. 3 4 So the first thing was to try and find out how many people this affected. But the 5 research itself showed there was a lack of culturally appropriate services and that 6 was a very significant finding, something that affects a lot of ethnic minorities, 7 but in this case actually was very extreme, and the research did lead to a policy 8 change in the UK dispersal system, and this is the system where in England anyway, 9 the government decided there were too many asylum seekers in one place and they would 10 have to disperse, in order for services to cope better, they'd have to disperse some 11 of the people that arrived at ports. 12 13 However this was affecting disabled people in that population in an unequal and 14 unjust fashion. So what we found was there was this invisibility of disabled status. 15 There was a silence by governments, policy makers, on the disabled asylum seeker 16 numbers, and there was obviously no coverage in policy documents of this issue, or 17 legislation. 18 19 Now this slide is mostly just about the background but what I'll give you from it is 20 that the policy background was extremely complex, the community care legislation that 21 applies across the UK makes provision for disabled people to receive services, and at 22 the time when the project started, people such as disabled asylum seekers would have 23 still been included, however there was this legal challenge going on about resources 24 at the time and it was deemed possible to, for local authorities to actually obviate 25 their resource implications, if they didn't have resources, so they could just say we 26 don't have enough resources, we can assess your needs, but if we find your needs are 27 greater than our resources, it then became legal for them to say we can not meet 28 those needs. 29 30 At the time there was a large problem with the media inflating the issue about 31 destitution in the asylum seekers population and there was a lot of fire going on 32 about draining resources that should be used for other people in the UK. So within 33 that backdrop there was new legislation introduced and you will see those at the 34 bottom, and entitlement to provision under the Community Care Act actually ended in Premier Captioning & Realtime Ltd www.pcr.ie 13 1 April 2000 and there was a new service formed called the National Asylum Support 2 Service or NASS. 3 4 So this is a slide showing the barriers, because within the social model that I said 5 we practice research, we look at barriers to different things, we look at 6 facilitators as well, but in this particular case we found a lot of barriers. 7 8 You will see here one of the barriers to health that we found was this -- this slide 9 shows the different range there are, there were people within the cohort who had 10 experienced massacre of their whole family, war, imprisonment, torture and deliberate 11 denial of treatment and you can imagine these things impacting on people's health and 12 forming a barrier to their own health. 13 14 These were the barriers to safety that we found, these are -- many of these when we 15 looked deeper in the qualitative data on this, and you look at the text, you find 16 some very difficult accounts of fleeing countries in order to get away from these 17 kind of issues. So there is death threats, religious threats, political persecution, 18 disability persecution, destruction of people's homes and theft of their property. 19 Some people have lost absolutely everything and make just a final bid to get into the 20 UK. 21 22 These were the issues with trying to access social services for example. We found 23 there was an inattention to linguistic requirements, there was a lack of 24 understanding of people's needs for interpretation, for different forms of linguistic 25 requirement. Lack of information was across the board, produced in different formats 26 etcetera, and forced moves, so being as I said dispersed from one area of the country 27 to another at very short notice meant that people's impairment needs didn't follow 28 them so information on those impairment needs would have to be set up again in a new 29 area. 30 31 And here we have the barriers to benefits, so there were many, many official 32 disagreements over status, you can imagine if someone is going through the process of 33 trying to claim asylum their eligibility to different aspects can change on a 34 day-to-day basis. So the inflexibility of the system was that it couldn't really Premier Captioning & Realtime Ltd www.pcr.ie 14 1 cope with allowing people some slack in the interim, it was a rigid system, we found 2 there was a lot of rigidity in the whole system across the board. 3 4 And this is slide talks about the social contact barriers, and we found people were 5 very isolated and often they were forced into unemployment because the policy system 6 means asylum seekers can't work, they mostly want to work but the system doesn't 7 allow people to work. The disability organisations by and large that we asked for 8 information on, had they he disabled asylum seekers contact them, had more or less 9 complete lack of knowledge. 10 11 So within the disability community they didn't understand that asylum seekers would 12 be present. Lack of interpretation as I said and inaccessible buildings. And that 13 was a particular point, even within this dispersal system, which was quite brutal in 14 that you could be told to go within a couple of hours, we actually found a case of at 15 that man who was a wheelchair user who was placed in a third floor flat that had no 16 lift and at that time people were given vouchers rather than given money for food and 17 necessities, so you can imagine the extremity of that situation, for that person, and 18 that obviously becomes a human rights issue at that point. 19 20 So there was this issue as well of forced dependency on family, friends and also on 21 strangers. That particular gentleman was relying on strangers to enable him to eat. 22 23 So, in summary from that project what I took from that is that there were multiple 24 barriers to surmount. You can use the barriers approach, it's very useful in 25 research, to isolate different ways in which break down all the different facets of 26 what is affecting people, why can they not get access to services, why can they not 27 obtain what they are entitled to. 28 29 You can see from it how you can explore the different facets of oppression and 30 persecution and you can also explore different facets of impairment requirements that 31 in this case were unaddressed, and look at obviously poverty, social exclusion, 32 unadapted housing. 33 34 So what I draw from that and my main message in this presentation is really that Premier Captioning & Realtime Ltd www.pcr.ie 15 1 there are some research practice lessons that we can learn from studies such as that, 2 now in that particular study the voices of the participant were central to the design 3 and we always take the view that users are experts and users are in control of the 4 research process, and this means that the researcher has a particular job to do. The 5 researcher is not the expert on the other person's life, the researcher is there to 6 record and package and advocate for better services as a result of what they find, 7 and the researcher's job is to facilitate research and that's all in the social model 8 framework that I discussed earlier. 9 10 So I'm going to run you through a few things on outcomes for disabled service users 11 because I think we can learn some lessons from that study also. But I will go fairly 12 swiftly through it because I want to finish by ten. 13 14 What this did was it looked at producing a new method of assessment based on social 15 model of disability and person centred principles, but within the confines of 16 government funded research. And so what we tried to do was use, innovate new 17 assessment documentation and a new approach and to embed, if you like, this whole 18 idea of service user choice and control within the assessment documents that would be 19 used for social services when they go out to make a new assessment under the 20 community care policy. 21 22 And this demonstrated the effectiveness of user led services and assessment 23 processes, and in fact led to much more focus now on self assessment that there is 24 within social services practices. 25 26 So this is just to show you that the policy background at the time was talking about 27 outcomes but in fact nobody was really using a focus on outcomes, and it says within 28 it, these are the general principles of assessment, it says in it that there should 29 be a focus on the preferred outcomes of service provision -- so the word was being 30 inserted cunningly into documents but nobody was implementing that in any shape or 31 form, so needs were still the focus of social services assessment at the time rather 32 than outcomes, and specifically there is no focus there on whose outcomes? So whose 33 outcomes are we talking about? 34 Premier Captioning & Realtime Ltd www.pcr.ie 16 1 Now when we did the research we were most keen to embed the focus on the service 2 users outcomes, on the outcomes they wanted to see from social services, rather than 3 outcomes the processional wished to see. 4 5 Again in a single assessment process, the focus there on outcomes, saying the 6 objective of providing help and anticipated outcomes for users, so getting a little 7 more towards the direction that we wanted to see. 8 9 Now previous research on types of outcome had found that it was split into three 10 areas, quality of life, change and service process, and each of these things were 11 extremely important to, were found to be very important to service users. And these 12 are the types of things -- types of outcomes service users want to see, they are just 13 things that everybody would know from general service practice, they are very 14 ordinary things and they are the things that people wish to see every day embedded in 15 practice and some of them were slightly more contentious than others, such as 16 employment and parenting, they hadn't previously had a focus on that in social 17 service practice at all, but they were found to be very, very important to people. 18 19 These were change outcomes and these are things which will resonate much more with 20 you, I think, from your research and your practice. 21 22 So people wished to see change outcomes, change in the particular abilities in terms 23 of mobility, adaptations, physiotherapy and so on, those were seen as things to 24 aspire to, improved communication, so improvements in interpretation and signing, lip 25 reading and so on. Regaining confidence and skills, perhaps after some time, so 26 counselling and training and encouragement, a need for all of those services. And 27 reducing symptoms, so reducing anxiety, depression and pain. 28 29 Now service process outcomes were the types of things that are about the way in which 30 a service is delivered and these are very important, because service users told us 31 for example even if services weren't available it was about feeling valued by a 32 professional and feeling respected and feeling heard, feeling that your point of view 33 is heard. 34 Premier Captioning & Realtime Ltd www.pcr.ie 17 1 Even if the service wasn't going to be provided that you have an explanation of why 2 it cannot be provided. So these are all about feeling valued, being treated with 3 respect, having control, having a say, and acceptance, generalised acceptance and 4 respect for privacy and confidentiality, and a good fit with other sources of 5 assistance. So other sources of assistance such as family, friends so on who were 6 assisting people, fitting social services into that framework. 7 8 So what did we change by doing the research? Basically we redesigned these documents 9 that social services professionals across the board would have to use every day, so 10 it put the focus much more onto the user to express what they wanted to see, what 11 their outcomes were, what they were aiming to achieve and the professional practice 12 had to change in consequence, the professional role had to change from expert to 13 facilitator and this was very important to us and that was not an easy transition I 14 have to tell you, but I don't have time for all the stories about what happened with 15 that, but it wasn't an easy transition, but we did have a commitment of the local 16 authority across the board to bring in that new focus and it is still working very 17 well. 18 19 So I think in terms of research practice, which is what we're talking about this 20 morning and what can we learn from it and how can we produce research that is 21 beneficial to service users, to disabled people, I think we can draw from that, that 22 focusing on outcomes instead of needs puts the service user in control, and this 23 issue of control is central to the social model of disability, central to our 24 commitment to working with disabled people. 25 26 Although professionals struggle it's important that we keep the focus and don't 27 deviate from it. 28 29 Okay so the lessons from it, I think the central lessons are that we are guided by 30 the voice of the service user and we can take this can do attitude, so when 31 professionals say no that can't be done, we take a can do attitude and we find ways 32 around those issues. 33 34 If you ever get a chance I think it's quite a neat little trick to redesign in-house Premier Captioning & Realtime Ltd www.pcr.ie 18 1 documents, it can force a change in perspective to service culture that may be 2 resistant, sometimes you can be told they are deal breakers, but they are not. 3 4 I am going to run you through now a different project, which is the use, role and 5 application of advanced technology in the lives of disabled people in the UK. This 6 was an Idris project that we started in 2006 as an inter-disciplinary project that we 7 started at Dundee and involved myself and a colleague from social work and some 8 people from computing, engineers from computing, people from nursing and other 9 colleagues across the school. 10 11 Now this is just to update you on the overall findings of the research, we found in 12 general that cost is the main barrier to having more of this advanced technology, all 13 the people we talked to wanted more of it, very positive views about technology and 14 very positive about learning to use it, especially computer applications and so on. 15 16 There was this lack of information on available products, which went across the board 17 and was quite tricky to get around. We found a specialist market is very costly and 18 has a kind of strangle hold on service provision in some areas. 19 20 There is a lack of training for service users and that affects things across the 21 board as well and aesthetics of devices were lacking, let us say. Lots of these 22 things look okay in a hospital, don't look right in your lounge, believe me, they 23 really don't look right in your lounge. 24 25 So when we started the project what we found was there was this under use of 26 prescribed devices, so the things that social services and occupational therapy went 27 out and gave to people in homes, we have looked across the board at all the different 28 studies, and what we found was, like other people, about a third of all devices 29 either get used once and put away or are not used at all. And that's a massive, 30 massive waste, just a huge waste of resources. 31 32 There is obviously a reason for that and the reasons I just explained at the 33 beginning all contribute to that issue of under use. 34 Premier Captioning & Realtime Ltd www.pcr.ie 19 1 We found centrally that designers and engineers of these products are driven by 2 different motives to disabled people, so what we wanted to do was look at this 3 problem and we found that disabled people want better functioning devices, and things 4 they can tailor better to their own requirements and their own impairment 5 requirements but designers and engineers weren't starting from the same place at all, 6 they were starting from a place of design ago product and then thinking I wonder is a 7 disabled population that can use this in some way or other? 8 9 So this is what we did, lots of interviews, lots of user clubs, focus groups and we 10 had an innovation day towards the end of the project where we got everybody together 11 who were concerned, architects, NGOs, everything, service providers. 12 13 So our orientation was social model of disability and this was our driving force 14 really, what were the frustrations and joys of using specialised and mainstream 15 market devices and future wishes, so we wanted to know what people like to see in the 16 future, what would they like designed and how do these technologies assist or hinder 17 independent living. 18 19 I can't show you that because it won't work, technology again! 20 21 So what we found from this was that the participants were out of step with the 22 market, the market was out of step with participants as well. The participants were 23 struggling with old devices and poor systems, and the cost of new devices was 24 prohibitive, so expensive they just couldn't afford the new things, but a lot of 25 these people were somehow lost in this digital divide an it was quite interesting, 26 there was no choice at all in the specialist market, if you needed something and the 27 professional came to your house you didn't get any choice about it, you need this, 28 have it, you're lucky to have it etcetera. So you didn't get any choice at all in 29 the specialist market about provision. 30 31 People were disillusioned and wanted to go to mainstream market, buy something 32 themselves to assist them, there was too much choice, didn't know where to go and 33 there was no advice, so they were lost in the middle of those two, that was a 34 conundrum. And we found that there was still professional power issues going into Premier Captioning & Realtime Ltd www.pcr.ie 20 1 programming some of these devices, you all know about the "Talkers" basically 2 someone's voice, if you have difficulty in communicating etcetera, such as Stephen 3 Hawking has, and we found issues where the professional would be programming the 4 device and there was one young man for example wanted to swear and the professional 5 refused point blank to put swear words in the talker. 6 7 Now you can say it's not that important, but to that person that was very important 8 and that is their voice. 9 10 So these were some of the things that they came up, people wanted face controlled 11 electric wheelchair, a solar powered battery for a talker, they run out of steam 12 pretty fast, they don't have much life in a battery and this person wanted a solar 13 panel on the front which could obviously in northern Scotland you're not going to get 14 a lot of sunshine but in some areas it could be useful. 15 16 There is a big market somewhere if somebody want to take up it for gardening devices, 17 lots of people wanted fine tools to pick up things at a distance and move them about. 18 And fully automated cars, now we are all wishing for this I think, but voice 19 activation has a long way to go in the technology field and there are still some 20 things we need to focus on there. 21 22 I'll flick through a little bit because we haven't much more time, but I do want to 23 talk a little about infrared and switch technology and Blue-tooth because those are 24 the future, all our participants wanted to see let's abandon wires altogether and go 25 on system that is use blue tooth and we need things that can control lots of devices, 26 so multiple remote controls and they are coming in now, programmable ones are very 27 useful. 28 29 There is lots of innovation that is we need to focus on in voice recognition 30 software, it still takes too long for us to programme those devices and for us to 31 really use them to their full potential, it's very laborious to train them. 32 33 There is too much on this but I will just run you through some of it slowly, quickly 34 I mean! Premier Captioning & Realtime Ltd www.pcr.ie 21 1 2 There is lots of different barriers and facilitators to learning technology if you 3 are interested in this I'll make the slides available and you can see what these are. 4 But basically as you can imagine any kind of training must be the best training that 5 you can get if you are trying to use something that's new to you and we found that in 6 general disabled people weren't receiving good training and there was poor and rushed 7 training, but instead they were asking a wide variety of people to assist them, lots 8 of different people, friends, charity, helpers from respite centres and so on were 9 all helping out and filling in the gaps. 10 11 There is lots of different lessons for instruction manuals if you have ever have to 12 write one, how to produce things, our participants valued online resources, 13 interactive resources, obviously, demonstration, videos not used enough in 14 demonstration, get away from the reliance on text, that's one of the key messages. 15 16 These are the barriers to learning which we split into pragmatic manipulation and 17 psychological issues, there were a lot of pragmatic issues in trying to learn new 18 technology in what it does, how you can make it work, but some of them -- most of 19 them were to do with time and patients and cost and complexity, a lot of things are 20 much more complex than they need to be, and one of the key messages from the research 21 was don't make things more complicated than they need to be, if you need one function 22 on an item, then why not stick with an item that has one function and why can that 23 not be designed? And a case in point here is phones. We had so much data on phones, 24 people don't want a phone that does everything including make a boiled egg, they want 25 a phone with three buttons that they can use, especially that they can use in an 26 emergency to contact relatives or service providers. 27 28 So these were some of the manipulation issues, again you can see size of buttons, 29 phones in particular have gotten smaller and smaller and tiny little things now, they 30 are very slippery at the back, quite difficult for people to get hold of, to keep 31 control of while pressing buttons and so on, and navigation through menus gets all of 32 us really doesn't it. 33 34 Psychological issues, a lot of people are quite bothered about technology, they are Premier Captioning & Realtime Ltd www.pcr.ie 22 1 afraid of damaging devices, particularly things that they are given by the State they 2 are afraid of breaking them etcetera, and in general we suffer from a kind of fear of 3 some things and we feel that we can't grasp them, but some of these things are made 4 more complicated than they need to be, as I said before and where people have 5 struggled and won through, you can see on this slide, people did gain self esteem, 6 confidence and through learning the necessary techniques they actually did build 7 their confidence to master these things. 8 9 So I'll flick through a little bit because we have less time, just to tell you 10 quickly about the policy backgrounds, policy is my big thing, the DDA 2005, the law 11 actually makes discrimination in services against disabled people illegal but it 12 doesn't have a product design, and that's a loophole. And there is two organisations 13 that we found with Ricability and the Disability Rights Commission actually 14 campaigned for universal design to be included in the DDA, but they were unsuccessful 15 and in consequence it's quite legal for a disabled person to be sold an item in a 16 shop that the seller knows will not meet their needs and they won't be able to use. 17 18 So another central point that came out of the user innovation day was some services 19 are classed as utilities, water, gas and electricity and that's very important for 20 disabled people because basically full access is ensured in that if a disabled person 21 has an issue in paying a bill then it's unlikely they will be cut off, so access to 22 those utilities is enshrined in policy, but phones are classed as a luxury item -- 23 now the big thing that came out of out of User innovation day was should landline 24 phones actually be classified as utility, because disabled people rely on them for 25 emergencies and support from service providers and friends and family. 26 27 And in tandem with that, many disabled people cannot use public phone boxes, they are 28 not fully accessible. But again mobile phones are seen as a luxury item, but for 29 disabled people they are not a luxury item at all, so there is this strange way in 30 which both policy and practice is out of step with each other. 31 32 So as a summary for the advanced technology project, size of device is a big issue, 33 choice, as I said too much or too little. Flexibility, there is not much of that 34 going on either. Aesthetics, how things look and so on, that's very dodgy. The law, Premier Captioning & Realtime Ltd www.pcr.ie 23 1 well we know what happens with the law! And access, access is everything obviously 2 and frequently not given. 3 4 So to return to my question, what research practices are most likely to produce 5 meaningful and effective research outcomes? I would say undertake research that 6 disabled people want and need. So the start with what they need, start with what 7 they want to see, ask them, that's the central thing. Start with the voice of 8 disabled people, make it central to the research process. So find ways in which 9 disabled people drive the research process all the way through. 10 11 Even when there is no solution and we have seen some examples of that in the examples 12 that I gave you, research can still draw attention to areas of concern to disabled 13 people and it can get other people thinking, so it can get other people thinking 14 about how can we get around this? Is that fair? Should we do something about it? 15 16 And research that reduces stigmatisation is very valuable, so devices such as we saw 17 with the technology project, some of the devices do reduce stigmatisation in central 18 ways, and the more we can use mainstream products the more we can use Apps on phones 19 instead of big clunky devices the better and in that way we reduce stigmatisation. 20 21 So these are the central principles, disabled people are experts not only on 22 impairment effects but also as I started by saying, on disabling processes in 23 society, and the researcher's task is to facilitate the voice of disabled people and 24 if necessary shame policy makers and governments into doing something, we saw that as 25 well, in order to produce better social welfare and conditions disabled citizens. 26 27 That's how we'll make the best use of resources and produce outcomes disabled people 28 want to see in the future. Thank you very much. 29 30 MR O'FLYNN: Thank you very much Dr Jennifer Harris who has done a masterful job of 31 getting us back on time, Dr Harris was willing to take questions but we have run out 32 of time, there will be an opportunity to ask questions of all of the keynote speakers 33 at the expert panel discussion tomorrow. 34 Premier Captioning & Realtime Ltd www.pcr.ie 24 1 In the meantime we'll have a coffee break in half an hour, but first please make your 2 way to the parallel sessions I would remind you of the change in schedule Lauren's 3 presentation is now on in Muckross A and Jose is now scheduled for 10.55, later today 4 I'll remind you that we have the EIPET/APA VET symposium, coffee in half an hour, 5 parallel sessions now. Thank you. 6 7 End of Presentation 8 9 Lauren Lieberman: Making your research meaningful. 10 11 CHAIR: Welcome everybody to this session with Lauren, there has been a schedule 12 change for those of you expecting Jose that has been moved to a different time and 13 different location! 14 15 So we won't be offended if anyone gets up and moves on to another venue, but how and 16 ever, most of you appear to be here to listen to Lauren and Lauren is going to speak 17 on building your research wall: How will you make a difference? 18 19 So Lauren comes from Brockport, the State University of New York at Brockport and she 20 is an international expert in the field of Adapted Physical Activity and has worked a 21 lot with people with visual impairments and is director of the Campabilities 22 programme for people with visual impairments and that's a programme that has run in 23 Killarney as well through the IT Tralee and Lauren was very helpful in establishing 24 that in Ireland. 25 26 So we are run ago few minutes over, so rather than listen to me talking I'm going to 27 handover to Lauren thank you. 28 29 DR LIEBERMAN: Thank you Catherine, I am going to let you know I am going to go a few 30 minutes over so you will have to get your coffee and run after this presentation. 31 And I have to say this presentation came about after years and years of doing 32 research and kind of doing what some of us start out when we start out in the field, 33 we do a little research project, because that gets us tenure, and I'm going to talk 34 about starting out or even continuing on your journey and making sure that what Premier Captioning & Realtime Ltd www.pcr.ie 25 1 you're doing is meaningful to you and to the populations that you work with. 2 3 And so the medium that I'm using to talk about this approach to research is the work 4 that I've done with mostly with children with visual impairments and people with 5 deaf/blindness. When I first came into this field there really were very few 6 research projects done after 1985, in the US some of you might know, that when we had 7 a law that said all children need to be educated in the least restrictive 8 environment, so a lot of the kids were educated in inclusive settings, which was 9 great but it made it very difficult to do research. 10 11 Then due to the widespread inclusion of children with visual impairments, research 12 after 1985 became more difficult, like I said, so it was very hard to find anything 13 in the beginning. 14 15 So when I started Campabilities in 1996 we had a large amount of kids with visual 16 impairments in one place, and just to give everybody perspective, a big study in the 17 area of visual impairments is like 24 children! Really it's a low incidence 18 population, it's hard to find a lot of kids in one place, so when we started 19 Campabilities I realised there were a lot of kids here, we could do some meaningful 20 research with this many children who are willing to answer questions or do some type 21 of assessments. 22 23 So over the years through the medium of all of our camps, we have done a lot of 24 descriptive studies, intervention studies and even from that we have developed books 25 and products and I'm just going to share some of this with you today, but I do want 26 you to know that I did make a huge bibliography, not just my research, but all 27 research done in the area of visual impairment and physical activity, it's broken 28 down into intervention studies, books, websites if anybody is interested in that I 29 would be happy to send that to you. 30 31 So I know when I was in my research class, how many of you remember hearing about the 32 research wall? Because we have people with visual impairments in the audience, why 33 don't we say clap twice, how many of you heard about the research wall we are 34 supposed to build, clap twice, some of you might have heard about the research wall, Premier Captioning & Realtime Ltd www.pcr.ie 26 1 I remember in my research class, the research wall, but as I'm doing this I realise 2 it's really more of a research tunnel. 3 4 So you start off for example with descriptive studies and so that's what I started, 5 doing descriptive studies and I'll explain some of those to you in a minute, then the 6 descriptive studies inform us about what interventions might be necessary, what is 7 going to help the population you work with, so you do a descriptive study, do the 8 intervention study, and then once you do the intervention study, I always think it's 9 important to do some type of research to practice, article, presentations, get the 10 word out there about what works for that population. 11 12 Once you do research to practice and I'm fortunate that I work with a company that 13 create products, now I take this, the practical perspective that works and we make 14 the product or something that's going to be helping that population, and that will in 15 turn improve your practice, next time you do the descriptive study the -- you hope to 16 see a better outcome for that population. So that's just how it's been working in 17 the area that I'm in. 18 19 But I don't know if everybody is fortunate enough to have this kind of system in 20 place where you can create the products, but I know some of us, I know Sean is doing 21 a great presentation on making your own products, you can also take that approach, 22 instructional strategies, writing articles, doing presentations to get the word out 23 about what's working. 24 25 So as most of you know -- how many of you are students? Clap twice. 26 27 So I'm going to describe a little about descriptive studies in case people haven't 28 taken the research methods yet, your instructor will be impressed with you, so these 29 descriptive studies are -- they help drive intervention research which helps fit a 30 need and it also helps drive product development, so the descriptive studies that we 31 have done, like I say the medium we are using, we are pulling all the kids together, 32 if you were to do research on kids with intellectual disabilities or learning 33 disabilities or autism, you might have a lot of children right in your home town, or 34 where you live, whereas looking at children with visual impairments it's a little Premier Captioning & Realtime Ltd www.pcr.ie 27 1 more difficult to get a larger number. 2 3 But we were fortunate enough, we have done research on rocking, rocking meaning why 4 do children with visual impairments rock? Research on balance, research related to 5 physical education experiences, both experiences and barriers. Also looking at self 6 efficacy, each one are different research articles that I can make available to you. 7 8 We looked at self determination, we have done several studies on looking at physical 9 activity levels of children with visual impairments, one we used fitness-gram and 10 compared the scores of children with visual impairments to sighted children passing 11 right and one using the Brockport physical fitness test using straight passing rates, 12 if anybody is interested in the results I can share that, just an example in that 13 study we had 144 children, which is huge, like I said for visual impairment. 14 15 We did research on parents and their beliefs about physical activity for their 16 children. And then we just did one with Donna Goodwin, some of you know Donna, she 17 is here, about the beliefs of children with visual impairments, about a segregated 18 camp experience. 19 20 So those are just a few of the descriptive studies we've done. And from the results 21 of those we were looking at the results thinking what does this mean? What should we 22 be doing next. 23 24 So we've done research on guide running techniques, the different techniques with 25 teacher or sighted guide or running to a sound, or a guide wire. We've done research 26 on talking pedometers and looking at the motivational aspects of talking pedometers, 27 also did all validation study with different types and I am excited to say from some 28 of these studies, some of my colleagues have done other research, for example 29 Elizabeth Holbrook did extensive research on pedometers from this information, she 30 actually took it one step further and said which -- because we found that one hip was 31 more valid than the other hip, like one hip, the scores weren't as valid, and she 32 figured out that it was because of the mobility aid, so if a person used a cane or 33 had a guide dog or sighted guide, it would be better if you had it on the opposite 34 hip of the mobility aid, but we wouldn't know that if we hadn't started the Premier Captioning & Realtime Ltd www.pcr.ie 28 1 intervention studies. So this is really exciting when you get into -- more in-depth 2 into some of the areas. 3 4 We looked at nutrition programming, and nutrition curriculum for children with visual 5 impairments. We did also isolated teaching techniques of physical guidance and 6 tactile modeling, and because our field, with the vision field we were not using the 7 same terminology, so what this research, the goal of this research was not just to 8 look at which technique was more, elicited more appropriate learning outcome, but 9 also to get us on the same page related to terminology and people in the vision 10 field, because what I'm finding is this is a very tactile field when you work with 11 people with visual impairments, it's a lot of intimate physical assistance and so if 12 people didn't use the same terminology somebody might accuse somebody of touching a 13 child in an inappropriate way, if you don't have the words to say this is the 14 instructional technique I'm using, we can get ourselves into a lot of trouble. 15 16 So we came to the same agreement with the field of visual impairment, physical 17 guidance means I'm helping that child through the motion. Whether it's a tap on the 18 elbow or total physical assistance, physical guidance means a instructor or a peer is 19 helping the child. 20 21 Tactile modeling is when the child is feeling somebody else do the motion. And so 22 the child might have their whole arm on my arm when I'm teaching the front crawl 23 stroke or might feel my leg when I'm stepping to roll a ball, that's tactile 24 modeling. 25 26 So when we did that research on these two instructional techniques, we found they 27 were both equally valid in instructing children with visual impairments, to me that's 28 a huge improvement in our field, now we know you can use either technique effectively 29 and now we knows the terms we are using and now we are on the same page with the 30 field of visual impairment. 31 32 We did research on jump roping, because we were trying to find something kids could 33 do at home to improve their physical activity and fitness, because of the studies we 34 found that kids were so behind in their physical activity levels, what could they do Premier Captioning & Realtime Ltd www.pcr.ie 29 1 in the home? So again we did a jump roping study, we also did a parents resource 2 manual study like finding out what's going to help parents help kids be more active, 3 and so -- actually I'll explain, all this is available now through the American 4 Printing House for the Blind. 5 6 We also did a peer tutoring studying, I know Aija does a lot with peer tutoring, we 7 did this with kids with visual impairments and looked at training their sighted peers 8 and helping them improve their physical activity and academic learning time and it 9 helped tremendously. 10 11 We're also doing a lot with extra games, I don't know if they are as popular in your 12 countries, things like Dance Revolution, clap twice if they are popular in your 13 country, things like the Wii Dance, Dance Revolution. They were not really 14 accessible for children with visual impairments, but we connected with some 15 Professors from the University of Nevada, Reno that Xer games in their expertise, and 16 we combined and we have done research on Kinetics, Wii Tennis and Bowling and the 17 game Pet and Punch, similar to Whack-a-Mole. 18 19 The exciting part of this is that not only have we found they improved the children's 20 physical activity levels, but kids also liked being involved in these activities and 21 then we created a dedicated website so people could download the information about -- 22 they could download the applications, so you can make your own Wii accessible for 23 children with visual impairments, what it does is just makes the Wii remote buzz, so 24 when you will bowl it shows you where -- it buzzes when you are in the right position 25 to roll the ball. 26 27 Then for the tennis when the ball is coming to you it buzzes intermittently then 28 solid when it's time to hit the ball, so it's all haptic and auditory, so these 29 applications can be downloaded for free, like I said on the vifit.org and then we got 30 a national science foundation grant so for the next three years we'll study and 31 create new Xer games for children with visual impairments, so keep an eye on the 32 website, it's free to families and teachers, so that's really exciting. 33 34 We've also done intervention studies for individuals who are deaf/blind, for example Premier Captioning & Realtime Ltd www.pcr.ie 30 1 on communication, on leadership and then we're just finishing up some research with 2 children with CHARGE Syndrome, which some of you might work with kids with CHARGE 3 Syndrome and you know what a complicated disability it could be if you don't have 4 appropriate interventions. 5 6 So this is the coolest part for me, from that descriptive research and the 7 intervention research, by the way a lot of our intervention research was supported by 8 the American Printing House for the Blind, so from that we've created products, a 9 walk/run for fitness kit, a jump rope kit, we actually made a tactile My Pyramid, our 10 government has a way to share nutrition information with kids and it was a pyramid 11 with different parts of the pyramid, different parts of nutrition and this tactile 12 pyramid actually makes it accessible for children with visual impairments where it 13 was not, now they call it My Plate, a plate with different nutritional requirements, 14 so that's a whole another thing! 15 16 But we wrote a book called "Everybody Plays", a children's book on how do children 17 with visual impairments play sports? And all the pictures and interviews were taken 18 at our camp. We developed a physical activity resource manual, and instead of being 19 a printed manual that will go out of date it's online on the American Printing House 20 website and they continually update it, so research, products, equipment, 21 organisations, summer camps are all on there for parents and teachers and it 22 continually updates. 23 24 We developed a video on how to teach children with visual impairments or 25 deaf/blindness and that video is on the Campabilities website, if you go 26 Campabilities Brockport you get a nice half hour video on how to teach children with 27 visual impairments or deaf/blindness, it is in English, but it is visual, it might 28 help you in your teaching. 29 30 We also made a documentary about the experience of kids with visual impairments in 31 the summer camp and right now we're developing these tactile boards that are going to 32 help kids with visual impairments understand the boundaries of different sports. 33 34 So let's say you're teaching football or soccer, you would put that on a clip board Premier Captioning & Realtime Ltd www.pcr.ie 31 1 and then kids could feel the perimeter of what you're teaching, before they go out on 2 the field. So it's not going to take them an hour to figure out what a volleyball 3 court is or badminton court is, they will be able to feel that tactile board and get 4 an idea of where the serving line is, where the net is before they go out and play 5 the game. 6 7 So this American Printing House for the Blind are very dedicated to our field, they 8 just funded a study on motor development and we're developing a curriculum on motor 9 development for children with visual impairments and we're also developing a kit with 10 all the equipment and we used the motor development as the foundation for the 11 research study. 12 13 Just some of the future plans, we held the national goalball tournament at the 14 university last year, we did some research with that. Working with Dan Tyndall, some 15 of you have know him from Limerick, we're working on sport education research with 16 goalball, and children with visual impairments. 17 18 Like I was saying we are doing this test of gross motor development research and of 19 course this Xer game research and playground research. So we have a lot of fun 20 things going on. 21 22 So what I wanted to do was take you to this next step, so I just want to show you, 23 when we get to that point of we did motor development research, we had 100 children 24 on the study, so from that we developed -- we're developing a motor development 25 curriculum, but the way we came to that is, and I'm going to show you where it comes 26 in. 27 28 This will come in and the research to practice and intervention -- it comes in that 29 part of the tunnel, research to practice and intervention area. So this is just one 30 sample of one of the research projects that we do, that fit into that tunnel. 31 32 I'm just going to show you, because we don't have a lot of time, this is just talking 33 about the participants, the instrument was the TGMD: As you can see here the 34 children who are B1, totally blind, on the left-hand side in the yellow, had the Premier Captioning & Realtime Ltd www.pcr.ie 32 1 lowest scores, so again a lot of our motor development curriculum is geared towards 2 children who are blind, because we found that the kids who are blind were having most 3 difficult time. 4 5 But the most interesting thing to me is that the run, if you notice that the run was 6 one of the most difficult motor skills and of course you can see the leap is also one 7 of the most difficult motor skills. 8 9 Then here we isolated which part, this is what I want to get to, the nitty-gritty of 10 which part of which motor skills are the biggest deficit, because then we can focus 11 on that in the motor development curriculum. 12 13 And because we also just received a 75,000 dollar grant to do videos that go with the 14 motor development curriculum, but what should we focus on? That's what this is all 15 about. So the thing that is highlighted here is the brief part where both feet are 16 off the ground in the run, that's what makes it a run, but that's the biggest 17 deficit, so if you see on this it says the run component, where both feet are off the 18 ground with children B1, that was the biggest deficit, so this was just an idea and 19 then an object control, because of that issue the kick was also a problem, you know 20 in the TGMD where you have to run up to the kick, that was also a weak area. 21 22 So you'll see that that is the biggest problem with the kick, is that approach to the 23 kick. And so our conclusion, we said kids who are B1, totally blind, perform worse 24 than kids B2 or B3 or kids with some vision in both locomotor as well as object 25 control skills. 26 27 Running and kicking are two of the most difficult skills for children who are B1, so 28 now we'll focus on that area. 29 30 And so, like I said, our current agenda, we just did a sighted control group, we're 31 developing a curriculum and then now we're making those instructional video, I'm 32 going to take a TV time out and say if anybody is interested in being part of this, 33 we're doing all the filming at our camp this summer, so again we're using this camp 34 as a medium to develop these videos to help teachers and parents teach their children Premier Captioning & Realtime Ltd www.pcr.ie 33 1 motor skills. 2 3 So again the research tunnel, what does your research tunnel look like? And how are 4 you helping the population that you're teaching and working with? And I think that 5 that's a good question we should ask ourselves. 6 7 I looked at some of the posters yesterday, people are doing some amazing things and 8 so where does that fit into your tunnel and how are you feeding that back and helping 9 the population you are working with? Remember we don't want to just take from the 10 kids or the adults or people that we are working with, we want to make sure we're 11 giving something back, not just an article, we want to make sure we're giving them 12 something back that's meaningful and help improve the skills and abilities of that 13 population in the future. 14 15 So these are just some of our campers at Campabilities. I know that was a lot to 16 throw at you and I know that some of you are already doing some really meaningful 17 research, but I just wanted to open it up for questions if anybody has any questions 18 or anything you want to share that you are doing? 19 20 Don't be shy! 21 22 Q. Speaker: Stephen Nichols, nice to meet you at long last. 23 DR LIEBERMAN: Are you Steve Nichols! 24 Q. Nice to meet you, really looking forward to Campabilities, it looks fantastic, what 25 kind of other, obviously why I'm asking this -- what other programmes are you looking 26 at to incorporate and how would you measure them with regards to their application to 27 the developments that you are looking for? 28 DR LIEBERMAN: Steve brought up a great point, Steve is involved in One Touch, a 29 self-defence programme, awesome for people with visual impairments, but that's a good 30 question, because people are always saying Lauren you should do this at camp or do 31 that at camp. Right now there is a woman who is promoting beep kickball, and I don't 32 know about anybody else's country but kickball is very big, it used to be big with 33 children on the playground, but now there is all these adult leagues playing all over 34 our country, so this woman made a kickball that beeps. She is going to promote it Premier Captioning & Realtime Ltd www.pcr.ie 34 1 all over the country. 2 3 I think to myself, now kids with visual impairments can play kickball, how to you 4 measure that? How do I know if when they go home if their friends are going to let 5 them play? Now they have this cool ball, she made a cool ball, but if they have to 6 change the rules will the friends change the rules? Will they really feel included 7 if they play that game with their friends? Or will it feel like a token, yeah you 8 can play, so that's a good question. 9 10 So we actually, for our established sports, the sports we do at our camp are tandem 11 biking, swimming, track and field, goalball, Judo, gymnastics and beep baseball, so 12 we have assessments for all of those sports, but when we introduce a new sport how 13 does it happen? So we could create an assessment similar to the one we have. By the 14 way if anybody is interested in the existing assessments they are on the 15 Campabilities website, anybody can use those. 16 17 So what it is, it's a task analysis breakdown of all the sports, it looks at the 18 sport and also the level of independents of the child, like how much assistance do 19 they need. So we do have a way to measure our existing sports but new sports like I 20 was saying with the beep kickball, I think that the kids would love it, at camp, but 21 is it going to transfer to home, I don't know. But the One Touch, do you have an 22 assessment for that? 23 MR NICHOLS: That's what I'm working on. 24 DR LIEBERMAN: That's a great question. But our specialists made the assessment for 25 each of the sports, so our gymnastics specialist made the assessment, the swimming 26 specialist made the assessment for swimming, but anybody feel free to use those. 27 28 Other questions? 29 30 This is just my take on the research wall, the research tunnel, this is just my 31 perception of what it would look like if you have a continual agenda that's feeding 32 back into the population you're working with, and it works well in the area of visual 33 impairment where I'm working, yours might look a little different, but the idea is 34 the same, to keep that population in mind. Premier Captioning & Realtime Ltd www.pcr.ie 35 1 2 Q. I'm Emma Ringer from the English Federation of Disability Sport, newly appointed as 3 research manager, we have identified there is a lot of people doing research, but 4 it's all disparity and working independently, and you highlighted that to make it 5 more viable and influential you should come together, one of my roles is to try and 6 persuade academics in the country, to pool their resources, I was hoping you could 7 give some insight into how I can persuade them that working together is beneficial to 8 everyone, in that as you highlighted working with different people with different 9 skills to get a better outcome, how do you persuade people to share their knowledge? 10 DR LIEBERMAN: That's a good question, like I said there wasn't a lot going on in the 11 US when I started. So I invite my colleagues to come to the camp, oh you're doing 12 research in sports psychology? And I've worked with sports psychologist they'll 13 come, I'll pay for them to come and do research with us, so then we're working 14 together because they are coming to the camp. 15 16 But the other thing that I just did is we made an all day workshop and One Touch was 17 at our workshop and so I had people doing research in visual impairment all day, we 18 did all day research to practice workshop at the national conference in Boston. 19 20 So we brought all these people and some had different research agendas but got to see 21 what each other is doing in the field and that started a lot of dialogue, so if you 22 can find a way to bring everybody together to even share what they are doing that 23 also helps generate more interest. 24 25 The other thing I have to say making this bibliography of everything done in the 26 field it really helps, let's say a new master student or doctoral student it helps 27 them to think half of the research, my hunt for research projects is already done, 28 maybe this is an area that I could do research in, so when I get an e-mail from a 29 doctoral or master student I send that to them, and the work is already done, why 30 should I not give it to them? And it's much more likely they do research in my area 31 and pulls them in to be interested. 32 33 I have to say a couple of the posters here I helped give them the background and 34 references to the research and now they have done a nice job because they didn't have Premier Captioning & Realtime Ltd www.pcr.ie 36 1 to do as much work searching for articles. So I don't think that's going to - the 2 person has to already have an interest in your area, it's not like they will do it if 3 they are not interested but maybe that would help generate the interest. Did that 4 help answer your question? 5 6 CHAIR: Okay thank you Lauren, that's extremely impressive in terms of the range and 7 breadth and depth of research that you manage to do alongside teaching duties and 8 presenting at conferences and everything else! 9 10 So the bibliography sounds like a fantastic resource for anybody looking to get into 11 research or continue research or even in terms of framing the research needs in the 12 field, and having some joined up thinking in relation to where research is going. 13 14 The one thing that struck me about the research that has been carried out and that 15 you referred to there is it's very, what we call transformational, in that the 16 purposes of it is not just to stay in academic circles and publications but to make a 17 real difference to the lives of people with disabilities and that's a very important 18 part, that's our main aim, to take that research and use it in a way that will 19 actually make a real difference to people on the ground and their families. 20 21 So I would encourage you to get in touch with Lauren as she suggested in relation to 22 accessing that and some of the other resources that you mentioned there like the 23 videos and things that are accessible through the Campabilities website, they are 24 fantastic resources to be able to take a look at and we wish you the best of luck in 25 the new ones you are doing this year. 26 27 So thank you very much Lauren. Lauren will be around for the rest of the day, I'm 28 conscious that more of you might have questions and you are doing a practical 29 session, beep baseball later on in the day, so as for now we've run into the coffee 30 break a little bit, so for those of you coming back to this session we'd appreciate 31 if you could grab your coffee and maybe bring it back in here, so the next session is 32 with David Hassan at 10.55 and Ray Lynch as well on the role of coaches in preparing 33 athletes for Special Olympics thank you very much for your time and hope to see you 34 back again soon. Premier Captioning & Realtime Ltd www.pcr.ie 37 1 2 End of Presentation 3 4 Jose Ferraria: Anxiety and motivation in basketball athletes with and without 5 disability. 6 7 CHAIR: Good morning, I want to welcome you to this session in this hall D. And now 8 I have the pleasure to present Prof Jose Pedro Ferraria, a Professor of Coimbra in 9 Portugal, the coordinator of exercise health and well-being for a special group 10 masters at the same university, I'm correct? And he is the President elect of the 11 European Federation of the Adapted Physical Activity and his presentation is 12 regarding anxiety and motivation in basketball athletes with and without disability. 13 14 DR FERRARIA: Good morning everyone. Thank you Javier for your nice words. 15 16 First I'd like to thank the organisation for the very nice conference they are 17 providing us here days here in Kerry, and my topic of this morning is anxiety and 18 motivation in basketball athletes with and without disability. 19 20 The data collected, that I will present, is part of a broader study that includes 21 data apart from anxiety and motivation, also from mental skills, in wheelchair 22 athletes, however I will just focus the presentation on anxiety and motivation. 23 24 So this is where I come from, Coimbra in the middle of Portugal and this is my 25 university and then my faculty just for those that don't know exactly where it is, 26 that's just a brief appointment. 27 28 So we know that psychological, there are different psychological benefits appointed 29 to sport participation in athletes with disability and in people without disability, 30 but our main topic is about disability sport athletes. 31 32 Usually these benefits are very much associated with better prepared, if athletes are 33 better prepared to support tension and frustration, it's easier to control levels of 34 anxiety, less susceptibility for depression and low mood states, and usually higher Premier Captioning & Realtime Ltd www.pcr.ie 38 1 contribution of sport and exercise for the construction of the individual permit. So 2 these are broad benefits that are appointed to disability sports and exercise in 3 special groups. 4 5 Another important topic is about the psychological determinants and definition of 6 psychological determinant according to Biddle and Mutrie determinants are factors 7 that might influence the individual participations in sport and exercise. So we are 8 looking, we are trying to target some of these determinants. 9 10 And today what I am going to talk about, there are a big list of determinants and 11 what I am going to talk about today is motivation, trait anxiety and state anxiety. 12 Some of the other topics mentioned are also inside of my research interests, but I 13 will not talk about them too much. 14 15 But motivation, how do we define motivation, according to Samulski we may define 16 motivation as the totality of the factors that determine different forms of behaviour 17 that is directed to achieve a certain goal. 18 19 And motivation is simply the direction and the intensity of the individual effort. 20 So people may have a certain level of intensity, is how much they put of themselves 21 trying to achieve a certain goal, and that may also vary in direction if that 22 intensity might be perceived as illustrative or debilitative. 23 24 Finally defining motivation from orientation point of view. We have task orientation 25 and ego orientation. 26 27 Task orientation are perceptions that are self referenced with a motivation driven by 28 a desire to master demands of a particular task and to improve one's ability or 29 competence. 30 31 On the other hand ego orientation are perceptions that are norm referenced with 32 motivation driven by the desire to perform as well or better than other competitors. 33 34 So task orientation is more related and directed to group tasks and group aims and Premier Captioning & Realtime Ltd www.pcr.ie 39 1 objectives, while ego orientation is much more concerned to winning and providing an 2 answer to our own level of perception and desire basically. 3 4 So competitive sport anxiety, it is a complex construct that is basically divided in 5 two exponents the trait anxiety and state anxiety. 6 7 Trait anxiety is an individual predisposition where a person perceives a huge 8 diversity of situations as threatening and responds to those situations with an 9 unadjusted level of anxiety. 10 11 On the other hand state anxiety, it is divided in different components and we make a 12 difference between arousal and state anxiety itself, arousal is a general 13 psychological and physiological excitement of the body and that varies in a continuum 14 that comes from sleep into an extreme level of excitement. 15 16 State anxiety changes in feelings related with worry and concern and are associated 17 with body excitement. 18 19 And when we talk about state anxiety we have two components, we have cognitive 20 anxiety and somatic anxiety, cognitive is much more concerned with thoughts and 21 basically negative thoughts, while somatic anxiety is a perception of physiological 22 activation and it is based on the feeling of different components, physiological 23 components, such as increasing of heart rate, increasing of sweating levels, bad 24 feelings, stomach feelings, need to go to the toilet before competition, because 25 there is a discomfort situation. 26 27 So this is a good example about different levels of act situation, of arousal and 28 motivation in sport and probably this girl here in the middle is not in an activation 29 level adjusted activation level for what she is going to do, to start a competition. 30 31 So the main problem of our research or the problem of our research was that top level 32 disability sport has increased -- has become increasingly organised and competitive 33 in the last couple of decades and achieved the potential to create anxiety and create 34 high levels of anxiety in many disability sports athletes. Premier Captioning & Realtime Ltd www.pcr.ie 40 1 2 And the question is how those athletes respond to these increasing levels of anxiety? 3 What type of coping skills do they develop and how do they manage this? And the 4 purpose of our study was to describe and compare the motivation orientation, both 5 task versus ego, of basketball athletes with and without disability. As well as to 6 describe and compare the intensity and direction of the competitive anxiety profile, 7 trait and state, also competitive basketball athletes with and without disability. 8 9 So our sample was of 95 male basketball players, 50 without disability and 45 with 10 disability. These 95 basketball athletes were competing at higher level, higher 11 competition level, at Portuguese national competition, so they were all of them 12 competing at first division level. 13 14 The instruments we used to assess were basically for motivation and orientation 15 assessment, task and ego orientation in sport and Teosq from Duda and we used the 16 Portuguese version validated by Fonseca in 1999, this instrument has two dimensions, 17 task and ego, with different items related to each dimension. 18 19 The second instrument we used was the to assess sport rate anxiety was the modified 20 version of sport anxiety scale from Smith, Smoll and Schutz from 1990 and also the 21 Portuguese validated version by Cruz in 1996, also 15 items in instruments, this 22 Portuguese version was a little bit modified and also less items than the original 23 version and we have three dimensions, somatic anxiety, worry and concentration 24 disruption. 25 26 And finally to assess the sport state anxiety we used the competitive state anxiety 27 inventory, CSAI 2 very used instrument, 27 items and we used the Portuguese version 28 also validated by Cruz and colleagues in 2006. Cognitive anxiety, somatic anxiety 29 and self-confidence were the three things assessed. 30 31 The variables we used, apart from those that I mentioned associated with the 32 instruments, motivation orientation, trait anxiety and state anxiety, we have also 33 used those independent variables that of competitive experience and intensity versus 34 direction of anxiety. Premier Captioning & Realtime Ltd www.pcr.ie 41 1 2 Just a small remark about this state anxiety assessment, in this study we didn't take 3 into consideration the time effects, because time effects we just described, 4 presented a description of one moment of assessment. Time effects were already 5 studied in a previous study published of perception of motor skills, so that's the 6 aim of the present study. 7 8 The procedures, we used one-to-one administration of questionnaires, of actually it 9 was a psychological battery that was organised with those instruments. We were 10 available at any time for answer doubts during questionnaires fields and in 11 particular cases, in those cases where athletes had more difficulty to understand the 12 questionnaire we used an interview method, but having previous training not for, to 13 avoid direction of the questions, the person that was interviewing developed skills 14 in order not to direct questions. Sorry, not to direct the answers, not the 15 questions, the answers! 16 17 And the administration was achieved during training sessions and after team meetings 18 with the participation and agreement of coaches and clubs of course. 19 20 So about the results, we see that for trait anxiety we have athletes without 21 disability present lower levels of trait anxiety compared with athletes without 22 disability, so disability athletes have higher values. 23 24 However an interesting result here is the change or the difference between an average 25 and also in the direction between somatic anxiety and worry in the direction. So for 26 athletes with disability somatic anxiety, direction is negative in perceived as 27 disruptive, however for athletes without disability it is worry -- if worry, the 28 direction is the one that is perceived as disruptive rather than facilitative. 29 30 In cognitive anxiety, sorry in state anxiety, also in cognitive somatic and 31 self-confidence values or intensity and duration, direction sorry, also the athletes 32 with disability present higher in levels than athletes without disability in 33 intensity levels, but in somatic and self-confidence levels concerns direction, the 34 athletes without disability present higher perceived levels of somatic anxiety Premier Captioning & Realtime Ltd www.pcr.ie 42 1 direction and self-confidence direction. 2 3 When concerning motivation orientation we see that there is a common profile here, 4 that athletes both with and without disability present higher levels of task 5 orientation and the differences in average are quite high, so they are much more task 6 orientated rather than ego oriented, but we'll see that in a moment. 7 8 So about trait anxiety and when we compare athletes with and without disability, the 9 pattern is very similar as you can see, both for intensity and for direction, and we 10 found no significant differences between the groups. 11 12 Basketball athletes with and without disability show a similar psychological pattern 13 for both intensity and direction of trait anxiety. 14 15 Also when we analysed trait anxiety results according to time of competitive 16 experience now we found statistical difference and of course we found statistical 17 differences between the two limit groups I would say, those that practice sport until 18 five years or have less than five years of experience compared with those that have 19 more than ten years of experience, these differences are at total anxiety level with 20 those that participating with less experience presenting higher levels, and also at 21 somatic anxiety level intensity with the guys that participate at less experience 22 presenting higher levels of somatic anxiety intensity. 23 24 So basketball athletes with more years of sport experience present lower levels of 25 intensity of somatic anxiety and total levels of anxiety. 26 27 So they are able to control themselves and develop coping strategies to control the 28 levels of anxiety easier. 29 30 For state anxiety also comparing athletes with and without disability, we have for 31 intensity also we found statistical significant differences for cognitive anxiety, so 32 athletes with and without disability have difference on the way that they are 33 concerned and they worry about getting, starting their competition and athletes with 34 disability present higher levels than athletes without disability. Premier Captioning & Realtime Ltd www.pcr.ie 43 1 2 So basketball athletes with disability present higher levels of intensity of 3 cognitive anxiety than athletes without disability. Significant statistical 4 differences were found and wheelchair basketball athletes seem to think more about 5 their performance and feel more concerned and worried about their performance just 6 before they start the competition. 7 8 Finally when we looked into motivation orientation, we see that when we compared 9 athletes with and without disability no statistical differences, however if you see 10 there are very big mean differences between task orientation and ego orientation. 11 12 And athletes with disability show a similar motivation orientation pattern than 13 athletes without disability. Basketball athletes with and without disability showed 14 that they are strongly task oriented rather than ego oriented. 15 16 So finally, when we look into motivation orientation according to the time of sport 17 practice, and we see that for task orientation, no difference, no statistical 18 differences, however for ego orientation we found differences between those that have 19 less than five years of experience compared to those that have ten or more years of 20 experience. 21 22 Athletes with disability and with more years of competitive experience showed higher 23 levels of ego motivation orientation when compared with their team mates with less 24 competitive experience. 25 26 So when we go into the review of literature and look for studies that analyse similar 27 results for intensity and duration of competitive anxiety there is nothing related 28 with wheelchair basketball athletes, however if you look into motivation, you find 29 this study from 2001 from Skordilis, a Greek college that analyse, using exactly the 30 same instrument in a different context but there is some comparability between the 31 result. And you can see that results from the present study and Skordilis studies 32 are very similar according to the motivation orientation of wheelchair basketball 33 athletes focus to task orientation rather than ego orientation. So our results are, 34 were according to the other study that was found in the review of literature. Premier Captioning & Realtime Ltd www.pcr.ie 44 1 2 So the motivational pattern found in the present study is similar to one study found 3 in the review of literature and this strong task orientation may be explained by the 4 fact that team sport athletes tend to be more task oriented as a consequence of the 5 co-operation activities. 6 7 We know that for to have a successful team it is much more important that there is a 8 co-operation activity between and cooperative profile between the members of the team 9 rather than and putting team goals as more important than their own individual goals, 10 and that's the good example to say that a team of stars don't make a very good team. 11 12 Okay we may have the best players in the world in the same team and they as a team 13 may probably not be the strongest team, because some of those athletes may be more 14 focused on their own individual objectives rather than the group objectives and the 15 team objectives. 16 17 So in summary, just to finalise, disability sport athletes presented a 18 pre-competitive anxiety pattern similar to one found in athletes without disability 19 both for intensity and direction. 20 21 More experienced athletes cope better with or control better the effects of somatic 22 anxiety and total anxiety. 23 24 And athletes with disability think more and are more concerned with their 25 performances just before competition starts. 26 27 Athletes with and without disability have similar motivation patterns, are strongly 28 task oriented as they perceive that team goals are more important than their own 29 individual goals. 30 31 Disability athletes may have fewer competitive experiences and may perceive less 32 secure and confidence experiencing new or less usual competitive sport situations. 33 34 And we know that this is very important, the competitive experience and the number of Premier Captioning & Realtime Ltd www.pcr.ie 45 1 competitive experiences is very much important to, in order to help these athletes to 2 control and to develop strategies to cope better with stressful situations. 3 4 And high anxiety situations. 5 6 And disability sport and disability athletes may not be so competitive oriented as it 7 is the case of male athletes without disability. And this is not new, this is also 8 reported in the review of literature and basically when we compare female elite 9 sports athletes with male elite sports athletes these differences are found between 10 gender -- I am not saying that elite wheelchair basketball athletes are similar to 11 the ones that female elite athletes without disability have, no, but we know the 12 level of pressure and the level of complexity of male elite sport unfortunately is 13 still higher than female and disability elite sports. 14 15 This is a consequence, there is outcome on the athletes profile. 16 17 100,000 thanks, as Irish people say, for your attention and I will be available for 18 questions if you have any. 19 20 CHAIR: We have a few minutes for questions, please? 21 22 Q. Thank you very much Pedro, one of the things I was wondering, just in terms of -- you 23 may have said this but I got lost when I saw all the numbers which don't mean much to 24 a social scientist, but I'm interested in the idea of time of competitive experience, 25 because there would be some in the 45 wheelchair basketball players that would have 26 been athletes before they were injured, is that included in the time of competitive 27 experience, or are you starting from the point that they first take up wheelchair 28 basketball? 29 30 Because I would think that that's going to have a psychological impact if you have 31 been a sports person before your injury and you continue in sport afterwards, but I 32 mean, any thoughts on that? 33 DR FERRARIA: Thank you very much for your question David. 34 Premier Captioning & Realtime Ltd www.pcr.ie 46 1 We considered time of sport experience, the time since they start practising 2 disability sport after acquiring disability or if it was a congenital disability and 3 they start doing sport. 4 5 However, these wheelchair basketball athletes, I know most of these guys very well, 6 this is not data from my PhD but I already worked and interviewed many of them for 7 the PhD, and there is a very small number of these guys that were doing sport before 8 they acquired the disability, okay? 9 10 So your point is strong, and probably we should have controlled that, but we didn't 11 because we knew, knowing these guys we knew most of them didn't do anything until 12 they acquired the disability. That's an important topic. Thank you. 13 14 CHAIR: Any other questions in the audience? 15 16 Pedro I would like to ask you because I feel very approach to the study, some of the 17 players that we saw in the pictures, some of them I know them, and you know Portugal 18 and Spain we share many, many players and the level sometimes are very similar, my 19 question is related to the one of David, I saw that there is a difference of 7 years 20 in the average age of both groups and the standard differentiation of the player with 21 disability is much higher, do you think this has an impact in the results of anxiety, 22 in the sense that as you said, they probably have less opportunity to compete, but in 23 my opinion and I want to know your opinion about this, do you think that in their 24 long term development as an athlete people with disabilities in this case, they have 25 less opportunities to see them in competition and that's why we have this other 26 results? 27 DR FERRARIA: Yes, definitely. I think I explained most of the -- well probably the 28 differences are not very big, the patterns are very similar, but the differences 29 between athletes with and without disability in my opinion I'm convinced that is due 30 exactly to the fact that the differences between experiences, opportunities to 31 compete are very different. And you know that for instance ten years ago Portuguese 32 wheelchair basketball was in European 4th division then to third and then to second, 33 and we have been growing, but slowly. 34 Premier Captioning & Realtime Ltd www.pcr.ie 47 1 These guys, most of these guys annually have two or three opportunities to compete 2 with other athletes, the number of wheelchair athletes in Portugal was quite small. 3 In 2002 I collected data for my PhD I had 64 wheelchair basketball players and they 4 were 87% of all Portuguese wheelchair basketball players, so this mean that is really 5 -- and the differences between teams as you know, now it's not really like that, but 6 some years ago, the difference was two or three strong teams competing for the title 7 and the other five or six or seven teams in the competition were very weak, and the 8 differences between the three first and the other ones was a huge difference, so 9 competitiveness was also limited. 10 11 So these situations may influence the profile and the opportunities that the athletes 12 have to develop their own coping strategies in order to control the levels of 13 anxiety, and finally, we should say that there is no psychological preparation in 14 wheelchair basketball in Portugal. No-one is working with sports psychologists or 15 whatever, that's also an important topic. 16 17 CHAIR: Thank you very much Pedro for your presentation and your answers, thanks. 18 19 End of Presentation 20 21 Kenneth Frojd: Power of Sweden. 22 23 CHAIR: Good morning, it is my pleasure to present to you Mr Kenneth Frojd, the 24 director of the Swedish development centre for disability sport and his presentation 25 today is regarding power of Sweden, strength training. 26 27 MR FROJD: Thank you for this opportunity to make a presentation, it is not a 28 scientific presentation, more like an innovative presentation, a development project 29 we are running now in Sweden, with some scientific studies as well for the future. 30 31 I just want to tell you about SUH is, we are a national development centre in Sweden 32 for Disability Sport and Adapted Physical Activity. And we have some member 33 organisations the Sweden University College of Physical Education and Sports in 34 Stockholm, the University of Gavle, the Swedish Paralympic Committee and Swedish Premier Captioning & Realtime Ltd www.pcr.ie 48 1 Disability Sport Organisation, and municipality of Bollnas where we are located, 2 regional sport organisations and county board of Gavleborg. 3 4 What do we work with? Something we call health sports, which combine health with 5 physical activity and sport and of course we try to develop method to help 6 rehabilitation and also develop elite sports to support Paralympic athletes and 7 Special Olympic athletes that's all part of Adapted Physical Activity. 8 9 We also work together with international paralympic committee, they have a network 10 international network of advancement of Paralympic sport through science, it has a 11 location in Birmingham Alabama in North America, the University of Sao Paolo in South 12 America, the University of Stellenbosch in Africa, Brisbane in Australia and little 13 Bollnas in Sweden for Europe, but we are in collaboration with a university in 14 Belgium. There is not an Asian centre, but there will be one selected. 15 16 We'll talk about strength, strength in general and about muscles. This is a picture 17 of a stone from the archaeological museum of Olympia, it is 150 kilos and you can 18 think that, about the development of strength training in the world, he could lift 19 this 600 years before Christ, with one hand over his head. This is the competition 20 of world strongest man and they use two hands to lift this stone, they weigh 165 21 kilos, so perhaps development isn't that big. 22 23 You think about when you want to get muscles, how do you get it? Is there a limit? 24 This guy perhaps hasn't only trained, he has pumped in oil in his muscles, he want to 25 be big, but perhaps not so strong, he also has a problem that the oil got out into 26 his body and he almost died. 27 28 Other persons that use other means than training, do you want bigger calfs? You can 29 do an operation, plastic surgery. 30 31 Also other implications of strength the right picture, not that good part of strength 32 training, later there is a combination of training with free weights and machine, 33 free weights is good, but not always, you have to take some precautions. 34 Premier Captioning & Realtime Ltd www.pcr.ie 49 1 When we talk about strength training in sports you look a lot into power, almost all 2 sports need maximum strength and power to excerpt force in a very short time is 3 important for everyone. 4 5 This clip doesn't work, but I want to show it to you in Sweden it's very popular, 6 functional training to combine strength with balance and this is an example of that. 7 8 (Video played) 9 10 So when you do functional training you need to have some precautions! This next two 11 clips are also about strength training, but not to be -- you don't need to be really 12 big to be strong, but it's more about explosive strength. This is a 400 metre runner 13 who is training in South Africa and I think it's so impressive actually, Johann 14 Reissmann. 15 16 (Video played) 17 18 Those hurdles are pretty high but he is pretty muscular, but you can be even smaller 19 and have more explosive strength, so I'll show you another example. This is a 20 retired high jumper Stefan Hohm. 21 22 You don't need to be big to be strong if you are talking about explosive strength or 23 even maximum strength. 24 25 We're talking a lot when we train our athletes, our paralympic athletes and athletes 26 with disability, how should we train and what should we do, so you need to adapt to 27 each individual, so which is the best strength training method? The best method is 28 to know why, when and how to use a specific method. There is no-one solution, that 29 this is the best for everyone, there are lots of training methods to use. 30 31 Also interesting is to compare training with free weights versus machines. Below is 32 the snatch, this exercise together with clean or clean power is most used by elite 33 athletes, this was research I don't remember who, did a comparison if you want to 34 train the same muscles that you do in a snatch and use machines, you need something Premier Captioning & Realtime Ltd www.pcr.ie 50 1 around 18 machines to do the same, these isolating machines. Training machines are 2 also good of course for instance if you are a wheelchair athlete and don't have the 3 stability, of course it has its use, but in elite sports if you have the stability 4 you use these exercises. 5 6 And when we train, we are seeing results, some research from the end of the 90s, but 7 trainability. And if you have good resource for training -- results for training it 8 should be 1 or beyond one. Very low effects for strength training to persons with 9 ID, how come, that sounds strange to me at least? So when we saw these results, also 10 the background of strength of persons with ID seems different to persons without when 11 they are young and the difference is bigger and bigger through time, is there a 12 difference? I don't know perhaps when you are small you develop through playing with 13 other kids and if you don't have motor skills or social skills you don't get the 14 stimuli, I don't know, but it is a difference that increases more and more. 15 16 And if you want to become an elite athlete you need to develop your strength really 17 good, it's a really important factor in almost all elite sports then this is a 18 problem. 19 20 Also based on this we are involved in some research together with a lot of other 21 institutes over the world when it comes to classification for athletes with ID, they 22 have been for a long time banned from participation in paralympic competitions in the 23 paralympic games, now they will be back in a few events in London this summer. But 24 in 2004 they were banned from the Athens games, then together with Swedish wheelchair 25 organisation we organised the first global games for athletes with ID. 26 27 We did some research, also looked at performance profile, physical profile for 28 athletes, a vertical jump competition, and prize money for those who participated and 29 almost all athletes participated. We used the forced platform to see, we want to see 30 is it the same in elite athletes, there were no studies about elite athletes. 31 32 Just an example, this is data about vertical movement jump, you stand like this and 33 jump as high as you can. For instance in athletics the average is like 30 34 centimetres base really, really low actually, all these figures are perhaps 50% of Premier Captioning & Realtime Ltd www.pcr.ie 51 1 the same result for able bodied, persons without an intellectual disability. 2 3 All the profiles we did at these games, the only factor that was a clear difference 4 towards persons without disability that was strength and especially leg strength, 5 explosive power. So strength was the movement jump and also standing jump that was 6 part of the euro fit test. 7 8 So after this we thought about this, we had some experience from sport high school 9 programme for persons with ID in Bollnas and some students there, I think they have 10 improved pretty well, we thought perhaps could this poor reactivity, poor results of 11 strengths training be due to poor coaching or do they need more feedback or other 12 reasons? So we did a training study. 13 14 I will translate the Swedish in this picture, 12 weeks intervention study, this is 15 not published data, it's a small pilot study, so the same coaches trained at the same 16 time two groups. One group were training eight persons training as a group, one 17 coach with all eight at the same time and they increased in percentage, still a good 18 increase for just 12 weeks, 7% increase in the result in sports. 19 20 But the other group, also eight persons, same programme, same coach, would get 21 individual feedback, he had two students at the same time, one student training and 22 the other resting and just combining, so individual feedback throughout all the 23 training sessions, the whole period. This is quite a big difference and this is 24 extremely good reaction to training. 25 26 So why this project Power of Sweden? We have an idea that persons with ID don't need 27 only individual coaching or more feedback, but perhaps also more stimuli to learn 28 exercises, to get good effects from strength training, that's also about perform the 29 exercises real well would a good technique and perhaps training two or three times a 30 week isn't enough, the sport high school programme in Bollnas we trained for many, 31 many years, but mostly -- I don't understand myself because we have been running that 32 programme for many years, we used most often machines, in some cases free weight, 33 just a few students that it was easy to teach and we thought, I also, even though I 34 am experienced in teaching persons with ID, that it is impossible to teach them well Premier Captioning & Realtime Ltd www.pcr.ie 52 1 they can't use it, I also talked to many coaches around the world and not many 2 coaches use like snatch and power, these exercises of free weights for their athletes 3 only a few. 4 5 Why? Because all athletes without ID use it, so this is not part of their toolkit 6 for training. So this Power of Sweden we tried to do training chasms, we took 7 together the best coaches in strengths training in Sweden for able bodies, they know 8 strength training really well, but also really good at teaching the exercises. We 9 did two weeks strength training camp. Normally when you go abroad for a training 10 camp you do sprinting and jumping and technique, but this was focused totally on 11 strength training and to learn these two exercises with free weights. 12 13 In this camp we also had like a role model with us, a role model that is really good 14 at this exercise. This is Swedish hurdler Sanna Callur, she was with us two weeks 15 doing the training. 16 17 (Video played) 18 19 In this you will see her with another person. 20 That was Sanna, she trained together with our athletes, it worked really well, then 21 we'll show you the image with the best athletes among the student, a long jumper 22 Emma, has been training for a long time, she has tried to learn at home with a few 23 training sessions each week, these exercises, snatch especially and she is perhaps 24 one of the top five in the world, top six in the world in long jump for athletes with 25 ID. I have them in the wrong order this is the second week of the training camp, the 26 next clip will be the first week. 27 28 (Video played) 29 30 Now we'll go back in time -- no, wrong one! 31 32 (Video played) 33 34 We'll have to look at him as well now! Premier Captioning & Realtime Ltd www.pcr.ie 53 1 2 (Video played) 3 4 I don't know if you could spot the difference? There is a big difference in 5 technique there and still she is one of the best, and the result that was amazing for 6 me, that we have all students with different level of disability, also I could never 7 imagine that they could learn these exercises, but actually when it was -- I think 25 8 or 26 students, after two weeks all of them could use both exercises -- all of them, 9 for me -- I couldn't take it in my mind before this, but now we can see that any 10 athlete with ID could use these exercises for training, as part of their toolkit 11 actually. For me that is perhaps a more important result than the strength 12 development during these weeks, that you can actually teach them all to do this. 13 14 But more or less no-one is doing it around the world yet, but I hope many will do so. 15 16 This is just for me to remember, it's very difficult for to you see this, but after 17 this training camp we had some questions for all the participants and a lot of the 18 athletes, the students when they arrive to this training camp they didn't even like 19 strength training, they thought why should we go to training camp to do strength 20 training, I don't like strength training, I want to do floor ball or jump or run. 21 But after the camp almost all of them would -- who didn't like strength training 22 enjoyed it, perhaps it was because they got a lot of attention and focus, they felt 23 confidence in doing the exercises. 24 25 Witnessed when we came back to the school afterwards the PE teachers came asking what 26 have you done with our students, they were more confident and totally different in 27 many aspects and moved, had better motor skills. 28 29 So I think a lot of the training of free weights helped with their motor development 30 as well, it was amazing. So more than how it affected their self esteem and how it 31 affected their technique, their possibilities to use these exercises, much more 32 important than the strength development, that will come in long term afterwards. 33 34 There will be a lot of data with this, we'll continue with more camps and we'll of Premier Captioning & Realtime Ltd www.pcr.ie 54 1 course present some results in a scientific presentation we will come back next 2 EUCAPA or perhaps ISAPA but I want to share this with you and perhaps some others 3 here have equal experience or others want to incorporate with us or continue with 4 this type of study. 5 6 Thank you. 7 8 CHAIR: Is there any question in the audience? 9 10 DR FROJD: Everything is crystal clear! 11 12 CHAIR: I have a question, the trainers that you used for the camp, that they were 13 from let's say mainstream sport, how many -- how did they feel with the athletes? 14 DR FROJD: They had experience of working with persons with ID, when worked together, 15 when we developed , SUH, my organisation and the sport high school programme in 16 Bollnas I recruited coaches not from disability sport, I tried to recruit the best 17 able bodied coaches I could find. 18 19 When you have a really good elite coach, their nature is that they are a problem 20 solver, they don't care if you have a disability or whatever, they see a person and 21 they look and they try to identify what is your capacity, so what do I need to 22 change, so they easily adapted -- but also these coaches in the training camps, one 23 of the best coaches, coaches Sanna Callur, he was with us at inclusive training 24 camps, he didn't have theoretical background, but has experiences from this group. 25 26 CHAIR: Okay, are you focusing in track and field competition or do you apply the 27 power of Sweden for all the range of athletes? 28 DR FROJD: For now it is the sport high school programme, for us now it's football 29 players, floorball players and athletics and bowling, four sports at the moment. 30 31 Q. Thank you very much for a very interesting presentation, I was wondering about how 32 was the best way to apply this for all children, I think from small children and 33 after schools, leisure time, because it's very interesting results now the strength, 34 we can focus more on that? Premier Captioning & Realtime Ltd www.pcr.ie 55 1 DR FROJD: If I could influence what they do in school in Sweden, I would say in PE 2 classes not to go to a traditional gym, when you are really small learn very easy 3 barbells, use equipment and teach them in the PE classroom and have it from the 4 beginning. If everyone knows how to do this they can use it when they come up in 5 age, also for health, also studies showing that one of the best things to train when 6 you are really old is maximum strength, I suppose if you could use this type of 7 exercises when you are 70 or 80 you will keep stability and healthy, instead of being 8 in a machine and lose your balance, it's more functional and easy to organise for a 9 PE teacher, it's a big problem for PE teacher to try and take a class into a gym with 10 all the machines, you can't give any feedback. I think you should use it not just 11 for ID but for the general population, that starts when you are really young. 12 13 CHAIR: Any final questions? No. I want to thank you for your presentation because 14 I can talk about Spain, I would dream if I can have all the athletes with ID or even 15 different disability, together in such a wonderful forum to make them better, to make 16 them perform better, but in my country the sport is really differentiated in 17 different federations, so I think the model that you are running would fit very, with 18 many difficulties, but this is something that we should think in the future and this 19 is a really inspirational, at least for our case. So thank you very much. 20 21 End of Presentation 22 23 Luncheon adjournment. 24 25 Dr James Rimmer: Promoting inclusive physical activity communities, one community at 26 a time. 27 28 MR O'FLYNN: Good afternoon everyone. Welcome back, great to see a full house for 29 what we anticipate will be a great talk. 30 31 I hope you enjoyed your lunch there will be a lot more food and presumably a little 32 bit of drink tonight at the banquet reception at 8 o'clock, tickets still available 33 for people here for the day, and anyone who wants to bring extra guests feel free, 34 pick them up from Ursula at the reception desk. Premier Captioning & Realtime Ltd www.pcr.ie 56 1 2 It's time now however to welcome one of our overseas guests, for the past 30 years 3 Dr James Rimmer has been developing and directing programmes for people with 4 disabilities, most of them aimed at increasing physical activity, reducing obesity 5 and improving nutrition. 6 7 He is a director of the US National Centre on Physical Activity and Disability and 8 also a director of the Rehabilitation Engineering Research Centre on interactive 9 exercise technologies and exercise physiology for people with disabilities. 10 11 Please welcome, Dr James Rimmer. 12 13 DR RIMMER: Thank you, I'm really excited to be here this afternoon and share with 14 you a concept that is just really in the beginning stages of trying to understand how 15 we, as Adapted Physical Activity professionals, can promote physical activity 16 throughout the world and the community. I have been an adapted physical activity 17 professional since 1977, when I started in Ohio State and went on to Texas University 18 with one of the great leaders of the world, Dr Claudine. 19 20 We are all part of a niche or a family that we need to think about how do we promote 21 Adapted Physical Activity across different sectors or different groups? So this 22 afternoon's presentation is to take you through some of the theoretical underpinnings 23 of what we need to do in order to not only build and enhance the reputation that we 24 all deserve as Adapted Physical Activity professionals promoting health and wellness 25 among children, youths, adults and seniors with disabilities. 26 27 But we also have to begin to think about how do we get into the rehabilitation 28 spectrum that we hear so much about in the US, where most of the services and the 29 resources and the money really go to acute care and sometimes sub acute care, there 30 is very little resources available for people with disabilities, newly acquired 31 disability or those born with disabilities to actually get out into the community, 32 where they need to go in order to continue to restore their health and in some cases 33 improve it. 34 Premier Captioning & Realtime Ltd www.pcr.ie 57 1 So this afternoon's presentation is taking through a framework that we have just 2 established here in the US and also to share with you some thoughts about how we need 3 to build this out as professionals. 4 5 So with that in mind I have been a director of the National Centre on Physical 6 Activity and Disability in the US for the last 13 years, this is a grant that's 7 funded by one of the major federal agencies called US Centre for Disease Control and 8 Prevention and CDC has been very supportive of the whole concept of what we term 9 inclusion, many of you use that term in your classrooms or in your programmes, the 10 concept that we have through this funding is really how do we begin to develop 11 materials, resources and information that get out to people who certainly need more 12 information in order to promote the health and well-being of the people they serve. 13 14 So the purpose of this presentation, I'm going to try and be as brief as possible so 15 we have time for questions, is really to begin to think about what do we do on a 16 national level, or the international level that promotes the enormous talents, 17 resources and knowledge that we have in this room today and at this conference? And 18 what I have done in my career, which spans across 30 years is, I begin to - I have 19 begun to migrate out into other professional conferences, like public health 20 association, and rehabilitation sciences conferences, where there is very little 21 information and knowledge and awareness of Adapted Physical Activity, so we have to 22 begin to think about how do we as a professional group, ensure that we're part of a 23 network or an infrastructure that recognises that in any circumstances when we begin 24 to address the health needs of the most underserved community in the world, people 25 with disabilities, that Adapted Physical Activity professionals need to be at the 26 table. 27 28 So as much as, with all the great work we do in our isolated programmes and we have 29 many outstanding programmes in this country and other parts of the world. What is 30 not happening in my opinion is the recognition and awareness of the talents and 31 resources that we have, where we can begin to think about how do we promote inclusive 32 physical activity and train other professionals who work in different sectors of 33 physical activity, but again have very little knowledge of how to promote health 34 among people with disabilities. Premier Captioning & Realtime Ltd www.pcr.ie 58 1 2 So there are major issues that we can use to support our work and I know this is a 3 very difficult economy in many parts of the world, including Ireland and the US and 4 several other European countries, but notwithstanding the limited financial resources 5 we now have available to us to promote and expand programmes, we still need to think 6 about if you had to go into a court of law and argue to a judge or a magistrate that 7 this was an important area to continue to fund, or to increase funding for, one of 8 the things you would want to argue is that the health of people with disabilities is 9 severely compromised and lower than the general population. 10 11 And that in fact this is not part of the disability. It is not part of the genetic 12 make-up of a characteristic of people with disabilities. But in many circumstances 13 associated with some of the these environmental limitations that prevent or reduce 14 possibilities of people with disabilities participating in the social fabric of the 15 entire community, including physical activity and health promotion, so when you go 16 out into areas where you see young people or older people, participating in social 17 activities, going out to a restaurant to eat, going to a gym to work out, meeting 18 friends in a local tavern or a library, you very rarely see people with disabilities 19 actively engaged in those same types of activities. 20 21 Obesity is an epidemic health problem, much higher among youths and adults with 22 disability. Seniors are ageing into disability, a term that's used more and more, 23 people are acquiring disabilities later in life with higher rates of co-morbidities. 24 Rehabilitation PROMs today in US has been severely truncated so the amount of time 25 someone gets after an acute injury, like a spinal cord or head injury, might only be 26 somewhere in the vicinity of 20 days where ten, 15, 20 years ago it was closer to 60 27 or 70 days to get all the types of information and training they need for a bowel and 28 bladder maintenance to deal with the preventive pressure ulcers, addressing many of 29 the other health problems that occur right after a disability. 30 31 Care givers and parents struggle with trying to find activities to keep loved ones 32 physically active and mobile. 33 34 Many people with disabilities living in isolation and slowly declining in health, Premier Captioning & Realtime Ltd www.pcr.ie 59 1 nobody is recognising how this decline in health is impacting society as a whole. 2 3 And people with physical, cognitive and sensory disability are often overshadowed in 4 a society that normally beats to a different drum and has a different standard in 5 terms of work, recreation and social life. So we have almost two wavelengths of 6 activity in most societies, one where people with disabilities are located and the 7 other where many of the rest of the society is located. 8 9 In our country, for example, the unemployment rate among people with disabilities is 10 somewhere in the area of 65 to 75%, that means every 6 to 7 people with disabilities 11 are not employed. And for the most part cannot even work part-time because of the 12 risk of losing a healthcare service. So they are bombarded to life of being in the 13 home most of the day, very little opportunity to get out of the home except to see a 14 doctor or clinic, this could be a very dangerous type of lifestyle, because you have 15 access to greater amounts of inactive behaviour normally in homes, you have screens 16 like computers and TV, people spend a lot of time there and also you have greater 17 access to food and if you are on a limited income very often that food is high in 18 fat, sugar or salt, which creates other kinds of health problems. 19 20 The other problem we see in the US system is people with disabilities are tethered to 21 the medical and pharmaceutical industries, so when they go to a see a doctor with a 22 disability they are told how are you feeling today? Is the medication working? Do 23 you need a new medication? Are you feeling depressed? And if the responses are 24 positive, in many cases instead of the physician recommending a physical programme or 25 health promotion programme they say I'll write you a prescription for 26 anti-depressant, so you're having trouble with urinary tract infection we'll get you 27 medication. 28 29 But rarely do you talk to people with disabilities and hear a level of enthusiasm 30 from the medical industry that supports health and wellness. That being said, the 31 typical medical model in the US doesn't really say much about physical activity to 32 the general population either. But to a large extent if you look at differences in 33 the research more people without disabilities are recommended a programme of physical 34 activity by a physician, even if it's just a general comment you need to get more Premier Captioning & Realtime Ltd www.pcr.ie 60 1 exercise, than people with disabilities. So there is a high level of -- I wouldn't 2 say unfairness, but inequity when it comes to the understanding of what to do with 3 people with disabilities. 4 5 And added to the problem, is most of the physical activity programmes and venues and 6 services and systems that we see across the world lack the infrastructure to promote 7 health and physical activity, that's another piece where physical activity, Adapted 8 Physical Activity professionals can have a profound influence. 9 10 I want to show you a model that I have been using in many presentations in the US. 11 Recent census data show there are approximately 54 million people with disabilities, 12 we have approximately 300 million in the US, that's one in every six people have a 13 recognised disability and what is more urgent is when you start to look at the 14 disabilities that are emerging, not disabilities yet, but these will be people who in 15 the near future will be diagnosed with a disability according to the federal 16 guidelines, disability plus emerging disability, you end up with approximately 115 17 million, which drops the number from one out of six people who need some sort of 18 physical activity programme to one in three. 19 20 The ageing demographics will also show disability will increase, I mentioned a few 21 minutes ago at the beginning of the presentation that people who are older are ageing 22 into disability and then people who have disabilities who are ageing with disability. 23 Those are two distinct concepts you should be aware of. Ageing with a disability and 24 ageing into disability. These are dichotomy groups who will slowly start to merge 25 and be one sub group of the population. One very large sub group who will have 26 physical, cognitive and sensory limitations, that will limit their access to physical 27 activity or completely eliminate any opportunities for promoting their own health, 28 because of limitations in the environment, and what's so striking is when you look at 29 the years that we are currently, the decade we are currently in, you can see from 30 this particular slide that 2010 to 2030 you are getting substantial increases in the 31 slopes of the lines showing people over the age of 65 are going to drastically 32 increase again in the US, I'm sure it's like that in other parts of the world as 33 well. 34 Premier Captioning & Realtime Ltd www.pcr.ie 61 1 So we have the perfect storm. We have a situation where we have an industry that's 2 built on short-term rehabilitation care, we have a pharmaceutical industry in our 3 country that rivals probably any of the top ten 500 Fortune companies in the US, 4 companies making billions and billions of dollars in promoting pharmaceuticals, not 5 to say pharmaceuticals aren't necessary in many cases, but certainly there is not a 6 high level of promotion of physical activity or other forms of health promotion in 7 comparison to the cost and money we spend in pharmaceuticals. And when you put those 8 two together in the context of disability and begin to recognise that people with 9 disabilities have lower social determinants of health, higher rates of unemployment, 10 very poor housing in many circumstances, limited access to high quality educational 11 programmes, limited access to the social components of a community, you begin to 12 realise that we do have a perfect storm here. 13 14 And in many cases people with disabilities are caught right in the eye of that storm. 15 16 Finally, in the paper I just published in 2012 in the journal, Exercise and Sports 17 Science Reviews, I began to use a term DALEEDS, Disability Associated Low Energy 18 Expenditure Deconditioning Syndrome, a long word that means basically this: Many, 19 many people with disabilities, particularly as they grow older and those who are in 20 wheelchairs and have rare opportunities to do any kind of activity, including 21 household work or just community activity have a very high rate, theoretically of 22 deconditioning, which ultimately leads to this cycle of physical inactivity, which 23 create two pathways, one showing changes in the whole area of cardiovascular fitness 24 and strength and balance, increased risk of immobilisation. And on the left side, 25 pathway two is high risk of cardio-metabolic risk factor, what it leads to is 26 increased personal care assistance, healthcare utilisation and decreased community 27 participation and quality of life. 28 29 This is a cost associated, if you have people with disabilities with higher rates of 30 unemployment because they have health issues or don't have access to employment, what 31 you end up with is a society of people with disabilities who are really being almost 32 completely ostracised to one setting, and that setting being the home, where they 33 again have very little opportunities for any type of participation in work, wellness 34 or social activity. Premier Captioning & Realtime Ltd www.pcr.ie 62 1 2 So it's a model to take into consideration as you begin to discuss among other 3 colleagues who don't understand disability as well as we do, that there is an urgency 4 here, because the perfect storm has arrived. And people with disabilities are in the 5 eye of that storm and we need to figure out ways to get them out of it and get them 6 into a lifestyle that really optimises their health and function. 7 8 Why are we doing this? A lot of times we don't do it because the way the systems are 9 driven is you get a salary, you get a pay cheque every week or every month, that pay 10 cheque is where you put your investment of time and energy. So if your pay cheque is 11 specific to teaching an adapted PE course in a school district, that's where your 12 resources and energy will go, because your compensation and your merit will be based 13 on how well you do as a teacher. But what concerns me is that when we begin to look 14 at the rest of a community, which includes other sectors like healthcare facilities 15 and dealing with doctors and nurses and rehabilitation professionals, when we begin 16 to look at the outdoor environment and how difficult it is for many people with 17 disabilities to get outside, because of a poorly designed curb cut or streets that 18 are too narrow for a wheelchair user and person to walk alongside each other, or 19 trees overgrowing and actually lift parts of the sidewalk, it becomes difficult to 20 navigate for someone with a balance impairment. 21 22 We have to begin to recognise that in our small worlds of Adapted Physical Activity 23 we are dealing with a tiniest piece of relationship to what is needed in our society 24 and throughout the world to promote health among people with disabilities, we have 25 got to start to think outside the box. Yes we do need good Adapted Physical Activity 26 teachers, no doubt about it, but to have these circles running in opposition to each 27 other, we have a great adapted programme, and then the rest of the world exists here 28 -- that's just not acceptable any more. 29 30 We have to begin to build an inclusive physical activity agenda that puts us together 31 and uses our skills to the greater extent of promoting health and wellness throughout 32 the community and throughout the sectors that constitute and define that community. 33 Does that make sense to everyone? 34 Premier Captioning & Realtime Ltd www.pcr.ie 63 1 So you can have a great Adapted Physical Activity programme, but if it's in an 2 isolated setting this tiny, and you have the world of physical activity here you must 3 do something about it. For the last two days I spent probably six or 7 hours writing 4 an invited paper for a colleague in Brazil where I did a presentation in November for 5 the journal Lancet they got six invited papers in physical activity, by the grace of 6 God he asked me and another person to add a commentary on physical activity and 7 disability, let me tell you, five or ten years ago this wouldn't have happened, you 8 would have had physical activity present their work, the Lancet which has one of the 9 highest impact factors in the world would never request a paper on disability. 10 11 But somewhere along the line, as we start to get out to other conferences outside of 12 physical activity, people are starting to get the message that we can not be left off 13 the train. Physical activity and disability is part of the culture and the 14 community. And therefore anything that you do in health, physical activity or 15 wellness, must include people with disabilities, no matter how difficult you think it 16 may be, it must include them. And to do that what I'm proposing is those of you who 17 are in Adapted Physical Activities get on the train, get on with other professionals 18 in health, wellness and many of you have already done that in the US, you see very 19 small numbers doing it and we begin to work together to develop what we're referring 20 to as these inclusive communities. 21 22 This is a typical picture that I developed for a paper published in Disability and 23 Health journal last year. What we often see, I don't know how many of you have gone 24 to a public health conference, in the US one of the largest public health conferences 25 in the world is called American Public Health Association meeting and in that 26 association they have approximately 30,000 people show up for the annual conference, 27 they have over 75,000 members, they have one of the highest impact factor journals in 28 the world, impact factor meaning very difficult to get into, a journal where 29 citations are quite common. 30 31 And they often run programmes, in a three and a half day period they might have 32 10,000 presentations in three and a half days, and what's so ironic is that they will 33 have a whole section called built environment, with members just like if you are part 34 of the American Association for Health, Physical Education, Recreation and Dance, you Premier Captioning & Realtime Ltd www.pcr.ie 64 1 have dance programmes, physical activity and recreation. Public health is set up the 2 same way, but it has 27 sections from nursing, medical care, statistic, environment 3 to now a physical activity section and disability section. 4 5 So I was the former chair of the disability section of course this is not just 6 physical activity, this is disability in general, these are people who come to the 7 table who are experts in healthcare for people with disabilities, experts in the 8 social model of disability, experts in medical care expenditures, experts in 9 secondary analysis of disabilities. These are people who don't know much about 10 physical activity, but need to hear about how important this element of health is for 11 the kind of work that they do in their work. 12 13 But what we have been lacking over the last few years is we have our group that talks 14 about usually in one session the whole issues with the built environment, narrow 15 sidewalks, poorly cared for ramps, lack of access to outdoor recreation, then next 16 door we have a whole section on the environment that discusses absolutely nothing 17 about disability, so they talk about walkability and bike-ability, building new bike 18 paths and trails, public transportation and urbanisation and access to parks and 19 trails and we sit right next door, listening through the walls and knowing everything 20 they develop will have a level of inaccessibility to someone. 21 22 They won't put benches on the trail or won't have good signage in the park, or go out 23 and build a brand new fitness centre in the community, 100,000 types of equipment, 24 none will be universally designed. Today we have 20 companies that make universally 25 designed equipment. They don't know anything about us and we know very little about 26 what they are interested in or what they are doing. 27 28 This is part of our problem. Now here is an example of where a parent is frustrated, 29 this is a parent who had a child in Adapted Physical Activity for many years, 30 absolutely loved it, I never heard of a parent come to me says I don't like the 31 Adapted Physical Activity teacher, they love us. But herein lies the problem, when 32 that child reaches the age of 21 he is done with his schooling in the US and he has 33 to now go and continue his own health. 34 Premier Captioning & Realtime Ltd www.pcr.ie 65 1 So this is what she wrote, this was written on our website, we have a blog on the 2 national centre site. "My son has autism and intellectual disabilities, but 3 otherwise extremely athletic and healthy, getting him into a local park district 4 programme was always a struggle. By age 4 I found we need to use the facilities at 5 the regional special recreation association, and except for the public pool and 6 walking track, hardly used the community park district at all. We live in Geneva 7 Illinois, not too far from where I live." Here is what she says. 8 9 "One thing that would have helped from my son with autism is a posted policy that a 10 person of any age with intellectual disabilities could enter with an aid at no extra 11 admission charge." I can't tell you how many calls we get throughout the country 12 where they want to charge two memberships, the membership for the person with 13 disability and the membership for a personal assistant who is not working out, but is 14 at the gym to help the person with the disability, but they see two people walk 15 through the centre and just assume two people, two memberships. So she is constantly 16 having to battle this, because it's against the law, ADA clearly says you can have a 17 service animal or a person support your needs without any payment required. 18 19 That was one things, these are all real life issues. "The entrance to the pool was 20 through the sex segregated locker room and toilet." Have you gone to outdoor or 21 indoor pools, men one way and women another, if she is a parent of a son with autism, 22 you've got two sexes there, but he can't go through the men's locker room and 23 navigate his way out to the pool. So for many years she had to take him through the 24 women's, he starts to become a teenager now you have issues, how do you get him into 25 the pool, he is an adult, same things happens. Now she has to hire someone to get 26 him through the locker. Someone has to walk him through. 27 28 "The park district built a water playground that is advertised to families with 29 toddlers, my son would love to use it, but I feel awkward bringing him when he would 30 be the only adult." So she has a child with severe autism, she feels uncomfortable 31 to take him to the toddler pool, because again you will have many parents complain, 32 here is an older boy, he is in the pool with young kids, this is unacceptable. And 33 in fact it may not be. If there is no harm done to other children, which obviously 34 the parent trusts and knows their son, then why not allow him or her to participate Premier Captioning & Realtime Ltd www.pcr.ie 66 1 in a pool where he feels a little safer and more accustomed. 2 3 The other point she said, "My son runs off outdoor trails that are not visually well 4 defined, it would be nice to have some with a fence or wall or tall plantings that 5 would guide him." He has gotten taller and faster than me and I cannot chase him. 6 This is a common problem with autism, sadly enough there are several residential 7 facilities where a youth with autism have died by running off the campus and running 8 into traffic or climbing over a fence and falling into oncoming highway, so running 9 or runners in autism is quite common, here's a parent who wants to take her son out 10 to the track or out to the park, but the first thing he wants to do when he gets on 11 the trail is run away, but if there was some kind of divider she would be able to do 12 that to a greater extent. 13 14 Here's another thing, a big thing in the US is skateboarding parks, they do 15 skateboarding with the different kinds of angles and ramps, and she says he can't 16 skateboard, but they don't allow roller-skates, can you imagine that? No 17 roller-skates, the materials on the wheels of roller-skate could be not much 18 different than a skateboard, so it would be good to make the parks multi-use. 19 20 And finally, she says every public park district should have at least one personal 21 trainer or staff comfortable working with people with developmental disabilities, 22 parents, family members shouldn't have to teach trainers how to work with their 23 child. So here's a parent in the US in a very affluent part of the country, Geneva 24 is an upscale community, I am sure they have many Adapted Physical Activity teachers, 25 I would bet my life on it, but here's a situation where she lives in that community 26 and the Adapted Physical Activity professional has no contact with the park district, 27 absolutely zero. 28 29 Yet here she is in desperate need to get him to a trail, park district swim 30 programme, on to the skateboarding park and there is no-one in that community she can 31 turn to. And if she turns to an adapted PE teacher he'd say sorry that's outside of 32 my jurisdiction I can't do it, I have no authority over the Park District. I can 33 help you with adaptations or modify certain things, but you can come to my clinic on 34 Saturday morning, but I can't do anything about him wanting to go out after school Premier Captioning & Realtime Ltd www.pcr.ie 67 1 five days a week and skateboard with his buddies, sorry. 2 3 I don't think that's the way we should run our business, do you? We've got to think 4 outside the box here. Start to bang that drum on those policy makers to say we can 5 do it better. And we can tell you how. But you've got to listen to us and we've got 6 to play in the big arena, no more being a small fish in the big sea, as adapted PE 7 professionals when I go to public health meeting, I came back from the advisory board 8 of the National Centre for Medical Rehabilitation Research, I'm carrying the message 9 into the community, you have to get people to understand what we do and expand what 10 we do for the entire community, if we're going to make an impact in this millennium. 11 12 Out of the schools and into the communities and back into the schools. So where are 13 the effective programmes? We don't have one, that's a problem, we don't know where 14 they are, we don't keep track of the evidence base. Our literature in Adapted 15 Physical Activity is very small, we don't have longitudinal datasets showing the 16 effects of the programmes across time, we have a lot of good self report data, but 17 when you are building a case for promoting physical activity, not only in the schools 18 but in every sector of the community, then we have to do a little better job of 19 running our research questions through the portal of well designed studies, with 20 adequate sample sizes and possibility of showing good effects with good baseline 21 measures, that can happen and will happen again if we think keeping outside the box 22 of how do we build and expand what we do as Adapted Physical Activity professionals. 23 24 A typical gym looks like this, high tables here, the person in a chair has very 25 little opportunity or sometimes they sit there for minutes at a time trying to figure 26 out if anyone will serve them, all locker rooms, some are old, but if you were a 27 wheelchair user and had a spinal cord injury with limited upper control, how will you 28 get dressed? First you can't get the chair between the bench in the locker room, 29 this is the way most public high schools look in America today, where will they 30 dress? No family changing room, which some of the newer gyms have. What happens, 31 they don't dress so they get a waiver for PE. 32 33 Pools are very good places of health promotion for people with disabilities, yet you 34 see a lot of pools like this one where you don't even have the opportunity to get Premier Captioning & Realtime Ltd www.pcr.ie 68 1 into the pool, how would somebody get into the water if there is no pool. Right now 2 in the US there is a major warfare going on because the Department of Justice, which 3 makes all the guidelines for the federal disability laws just mandated two months ago 4 that all pools, they didn't care if it was a private swimming pool, when I say 5 private I mean owned by a hotel chain like Marriott or the Hilton or a public pool, 6 had to have a way for people to get into the water. 7 8 I got requested from several high level attorneys, disability attorneys, disability 9 advocate attorneys fighting the major hotel chains who were so upset that they had to 10 find a way to make all of their pools accessible. 11 12 Now it wasn't even that they wanted a grace period to give them time to purchase the 13 right pool lifts, they didn't want to do it at all. And their argument was that 14 there are other forms of activity that people with disabilities can do and it wasn't 15 necessary for them to have to get into every hotel pool in America. That's what 16 rehabilitation centres are for, that's what special recreation programmes are for. 17 That's what adapted physical education programmes are for. 18 19 But my God don't put lifts into pools! That's not going to work. It's too much 20 money, and it's just a few people that use it. It's the same concept we had 30 years 21 ago, we decided every community should have curb cuts and probably 30 years ago a lot 22 of people in communities said this is ridiculous there is nobody in my community with 23 a wheelchair, why would I need one, now who uses it more? People with rolling bags, 24 family with strollers, baby carriages, kids use them, safe roots to school where they 25 bike on certain sidewalks that are wide enough and safe enough to bike on the 26 sidewalk, so seniors who have difficult times walking use them because they have 27 difficult time getting up on curbs. 28 29 The other problem that we have yet to tackle is that most of our ball fields for 30 children where they get most of their activity when they are young are inaccessible 31 for many children who have difficulty with movement and that is a challenge, 32 something we need to think about, the whole essence of activity is to have a 33 skill-set which allows you to succeed and that those with the highest set of skills 34 have the most success, you've got a problem, because the skill-set that gives one the Premier Captioning & Realtime Ltd www.pcr.ie 69 1 most success is muscular, skeletal, good strength, good cardiovascular endurance, 2 high levels of flexibility, low levels of body fat, and on top of all that, 3 tremendous skill, co-ordination and balance. 4 5 So if you take our population of people that we work with, where we want to see 6 integration and inclusion and match up those skills with the average child in that 7 community, what you end up finding is that the skill-set is so compromised in all 8 areas, that for them to participate there either has to be a complete paradigm shift, 9 where we understand the value and importance of success, not by winning the game, but 10 by having everyone participate. 11 12 We could revolutionise the way sports programmes today are run. Now I understand 13 when we get to a higher level of competition that it is necessary to get into groups 14 where you do compete against the highest level of talent, there are people who are 15 moving to that realm, but as you go from one level of talent to the next and you get 16 higher and higher levels there will be a very small number of people participating at 17 that higher level of being on a travelling soccer team, or getting a scholarship to 18 college, most of the reasons we participate in physical activity have been lost at 19 the early ages, and what parents think about automatically when they get involved in 20 first grade is scholarship to college or fame and fortune that someone will achieve 21 by being a world class athlete, of course everybody has dreams and it's okay to 22 dream, but when you dream and you compromise, people with disabilities, in particular 23 youth, because they don't have the skill-set, they don't have high levels of 24 strength, coordination and rhythm and you can't figure out ways to make games 25 accessible to everyone, so the end product is not winning, but participation, then 26 we've got a problem, because you start to lose those who fail the quickest. 27 28 So those are the last people you want to lose, the child who is a little overweight 29 or someone with a physical or cognitive disability. Those are the ones who need most 30 access. 31 32 How do we build inclusive health communities? We received a $730,000 grant to build 33 a community health inclusion instrument, some of you may have heard of the tool we 34 built several years ago called Aim Fre, Accessibility Instruments Measure of Fitness Premier Captioning & Realtime Ltd www.pcr.ie 70 1 and Recreation Environments, so we have a tool to measure how accessible is a fitness 2 centre, you can do it online, you will get a list of automatic solutions, it's a 3 wonderful tool, but only focuses on health clubs, swimming pools, locker rooms, 4 pathways, weight training rooms, this particular instrument is meant to say to 5 society, look if we are going to build inclusive health communities we have to start 6 with an instrument, everything has to start with a measurement and right now we don't 7 have an instrument or a tool that's valid or reliable for measuring accessibility of 8 health communities for people with disabilities. 9 10 Yet ironically when you look at people with the most number of barriers when you take 11 four groups, disability, ageing, minority and general population, the core level of 12 barriers will fall at the lowest level of the pyramid, which will usually involve 13 individuals with disability. 14 15 So my concept is to develop an inclusive health tool, we hear a lot about inclusion, 16 but this is a community inclusion health tool, then what you get is every barrier 17 above that should be less challenging, so if you deal with the ageing population, 18 there are many commonalities, maybe visual issues; they can't see certain types of 19 equipment, don't know how to get on and off a treadmill, the accessible pad is not 20 close enough to transportation to get on, they need closer transportation to the 21 walking path, so you begin to think through. 22 23 Then you get into minorities, where in the US you have the location where they live 24 very often have limitations in access to health, wellness and sports facilities, so 25 they have other cultural issues. Then you get the general population with their 26 issues, usually time, limited resources and so on. 27 28 But if you start at the base of the model, if you start to build inclusion tools at 29 the base of the model, no matter what you look at, you will have a tool that will be 30 more universally designed and inclusive of the problems that people with disabilities 31 experience in health promotion. 32 33 So in the last segment I'd like to talk through our centre, some of you may have seen 34 this, we are very fortunate to learn last week that we just received a new round of Premier Captioning & Realtime Ltd www.pcr.ie 71 1 funding, 3 million dollars, a million a year in US dollars to continue the centre and 2 this time we have a little greater emphasis on building inclusive health communities. 3 4 How do we do this? The way we'll approach it and we'll love to share it with all of 5 you in this room at some point, once we start to get this programme up and running, 6 we are going to have five goals in the centre. 7 8 New goals, community leadership, how to build it, information and consultation, which 9 is typically what our centre has done for the last 13 years, then health 10 communication, how do we build more health communication, social connectivity, social 11 media and so on, we're going to change the way policies are created at the Centre for 12 Disease Control, so any policy coming out will have a level of inclusion, we'll 13 develop criteria on what constitutes an inclusive health policy, criteria, so the 14 government can say, before they come out with a policy on building safe routes to 15 school programme or community guarding, they'll take that and pass it through the 16 filter now called inclusion, if the policy passes they can provide money to that 17 community. So community also have to be inclusive if they want federal money. 18 Finally we'll have a very strong education and training mission. 19 20 So the first goal in the grant, we'll develop something called inclusive health 21 communities and look at all these areas, accessible housing, street design, resources 22 for mental health, promote active living, availability of healthy foods, accessible 23 safe inclusive playgrounds, accessible transportation and fitness centres. So you 24 see what I did to my career? I took a small dot and said you know we have an 25 enormous talent that we have to share, I expanded that, just like you can do to go 26 into public health meetings and rehabilitation conferences, I spoke to a woman the 27 other day in Vilnius, Lithuania, last year, talking about the importance of how we 28 have to get on the train of rehabilitation. 29 30 Two years ago in Sweden, talking to the Scandinavian Rehabilitation Conference, 31 nobody at that conference had any background in the adaptive physical activity, I was 32 the only one out of 5,000 people, so I need a lot of help and those of you in the 33 audience can help me and can help us, which ultimately helps people with 34 disabilities, but again we have to think about how to we build inclusive health Premier Captioning & Realtime Ltd www.pcr.ie 72 1 communities, nobody is doing it. We have to figure out how can we get out of the 2 classrooms, where we do a great job, but we need to be in the communities in every 3 sector and work together to meet the goal. 4 5 So we started back in 2007 with the American College of Sports Medicine, include 6 fitness coalition, it's a great model for other countries, but we have started this 7 programme five years ago and have over 200 organisations supporting this area of 8 inclusive fitness. 9 10 We have a mission to provide more inclusive fitness programmes and venues throughout 11 the nation in the US. 12 13 We have developed workgroups in here, there are actually five workgroups, inclusive 14 play workgroup, which is a group focused on building and designing more inclusive 15 playgrounds across the country, inclusive health club, veterans and rehab, a policy 16 group and school and community based programme. That's the current structure. 17 18 Now I won't get into this today, but I'll share with anyone interested, this is the 19 plan for the first goal on how you build a community health inclusion programme, 20 which has a strong element of what we are at, the whole inclusive physical activity. 21 So we'll start with the health audit, we are developing an instrument, then we'll 22 write a sustainability plan over the next year or year and a half which identifies 23 and recruits partner organisations, you develop consensus, it's a formal plan with a 24 committee, and you establish communication processes, then we'll execute the plan by 25 establishing community partnerships with programmes like Y.M.C.A, local park 26 districts, the Special Olympics, we'll bring all these different groups to the table, 27 and then finally we'll be able to evaluate the success by how much we are able to 28 change various sectors and domains in that built environment with this instrument 29 called Community Health Inclusion Index. 30 31 So that's our plan, the output being hoping to change policy, environment, community 32 and individual changes, and ultimately we'll have on record how many communities 33 across the country will have a CHIP, the Community Health Inclusion Plan. 34 Premier Captioning & Realtime Ltd www.pcr.ie 73 1 That's our front and centre goal for this next round of funding in the national 2 centre. Our target sectors, schools, healthcare facility, workplace, community 3 organisations and community at large, we'll have a formal plan on how you get into 4 healthcare facilities, that works with nurses and doctors in teaching them the 5 importance of physical activity and where to get to get help, how do you deal with 6 the workplace environments and making them more accessible for people who are working 7 and we'll look at them individually in each community. And in schools many 8 communities don't have Adapted Physical Activity professionals or the quality PE 9 experience is very minimal and much lower than the rest of the class, so there will 10 be a front and centre issue in dealing with the programme in school system. 11 12 So the idea of the inclusive health community is we have an enormous number of people 13 with disabilities who live in all of these different settings, they are either in 14 home, retirement facilities, centres for independent living, rehab centre, outpatient 15 clinics schools, etcetera, what we want to do is bring the communities together with 16 something that now in my new position at Lakeshore Foundation in Birmingham, Alabama, 17 developed the Lakeshore Inclusive Health Coalition, who will galvanise community, so 18 what will happen out here is from all the interactions, when we talk about physical 19 activity, what will indirectly happen is things will start to surface that require 20 the talents of an Adapted Physical Activity professional, that will be guaranteed so, 21 so questions will come up about, we're developing this new physical education 22 programme, we require PE every day and somebody will say I don't know how to do this 23 for children with disabilities, so there is an example. 24 25 Or somebody else will say I want to develop a safe routes to school programme, but I 26 have a parent call me with a child with cerebral palsy and he has difficulty walking, 27 what are the adaptations or what types of adaptive equipment are out there, like a 28 hand cycle that I might be able to borrow to allow my child to do that. 29 30 So that's the questions that we are going to begin to ask. Again it will come back 31 to what we do as a profession. Looking at different domains, built environment, 32 equipment, programmes and services will be addressed, professionals and staff, 33 systems and policy, so in each of those sectors there will be five domains and each 34 of those domains there will be items written into the Community Health Inclusion Premier Captioning & Realtime Ltd www.pcr.ie 74 1 Instrument and when we start to see deficits in things like attitude, aptitude or 2 behaviour or architecture is not right, we'll have a compendium on our website that 3 will rival any kind of a Wiki in any part of the world with accessible adaptive 4 suggestions, devices, programmes, equipment, staff whatever it is, on our website 5 where people can go and download these solutions and provide them to the local 6 community organisers, and you will be a very big part of that as part of this 7 international community of people who are focused on providing adapted programmes for 8 people with disabilities. 9 10 The future of the Inclusive Health Coalition is to look at changing those 11 subdivisions to where we'll have inclusive schools committees, fitness, healthcare 12 and healthy environments committee. 13 14 And the organisational guide by any stretch of the imagination you can use it in your 15 own settings in Canada or Ireland or England or Lithuania, Latvia, the structure 16 needs to be -- you have to have some place where people go to get information and 17 once you have that coordinator, then you can build under this by galvanising the 18 community of independent living centres, local government, local housing, disability 19 rights, etcetera, etcetera. 20 21 Now would I have preferred somebody else doing this, absolutely, I am an Adapted 22 Physical Activity professional, this is outside of my skill, I do other things. But 23 when you recognise there is an enormous need in communities, and you see how just 24 even a small dose of what we do in a Saturday morning programme has an element of so 25 much happiness and contentment and health benefit, you have to ask yourself how do 26 you take that little dose that I give to those parents on Saturday morning and drop 27 it into a glass of water where that blue pill through osmosis increases the colour of 28 the water for the entire glass. 29 30 So we need more accessibility, higher accessibility, programmes and equipment where 31 there is greater access to machines like the bio step for people with limitations, 32 zero depth entry pools where people can wheel chairs in or have a transfer wall, but 33 places where people can get into water without having to ask for assistance, 34 playgrounds with ramps so children can play together with and without disabilities. Premier Captioning & Realtime Ltd www.pcr.ie 75 1 Sports fields that look like grass, but this is a hard surface, a sports field in 2 Chicago where people in wheelchairs play but can be used by softball players and some 3 of the smaller age groups in park district programmes. 4 5 Our future really lies, as I mentioned at the beginning of the presentation, we do a 6 wonderful job in our circle, but we need to grow the circle so they intersect and 7 there is more overlap with inclusion in the community. 8 9 This is a model that I have been working through for several years, we begin with 10 access which deals with the built environment and move on from access, you have 11 something called participation, which takes it one step, the funniest things, go to a 12 provider and they will say I have plenty of access, I have gym equipment that works, 13 I have got somebody who can get into and out of the machines, but we talk about 14 access that's only dealing with the structural aspects of that setting, we mention 15 participation, that's the integration into programmes and activities so if someone is 16 doing a circuit weight training class, they have modifications to do that programme 17 with an adult who want to participate, if someone is running a Pilates class they 18 have a way to adapt or aerobics or basketball programme. 19 20 Finally the sustainability side is something all of us in physical activity are 21 working towards and having a difficult time with, how do you keep people with 22 disability sustaining the type of physical activity that we recommend, that's not an 23 easy answer and something we need to continue to work on. 24 25 Ultimately, if we put A plus B plus C we should get D, which is improving health 26 function and lower healthcare expenditure. 27 28 So finally we have sample training and educational objectives, one thing I know many 29 of us do in this room at the university level, you can help with the training 30 components, online distance learning of promoting inclusion and health, we do such a 31 fabulous job at adapting all types of programmes, services and communities that that 32 talent has to start to bubble to the surface, so we start to give that to local 33 planners and public health officials and people in the general world of physical 34 activity and Y.M.C.A. directors and fitness and health directors and park district Premier Captioning & Realtime Ltd www.pcr.ie 76 1 professionals, so that again they understand that everything that they do should be 2 part of us and everything that we do should be part of them. 3 4 I'll repeat that one more time, everything that they do we should be part of. And 5 everything we do should be part of them. And these two should be inextricable, just 6 like a diad, because the talents that we have, have to be shared with the rest of the 7 community in order to make the entire community work for everyone. 8 9 Three years from now, I'm now at Lakeshore, they committed 10 million dollars to my 10 doctorate, 2 million to an endowed chair position I sit in for five years and 8 11 million for research, so we are planning to build the first longitudinal study in 12 Birmingham, we are collecting data on self report instruments, using something called 13 commuter adapted testing tools, where you can get a level of depression, with 6 or 7 14 questions for a level of fatigue, so we are using the sophisticated tools published 15 by NIH, National Institute of Health, we're building a data collection centre, we 16 have a referral system in Birmingham and what we're hoping to do is begin to collect 17 longitudinal data on people with or without disability, looking at the trajectories 18 of health over time. Everything we have in literature seems to be cross-sectional, 19 we take a swipe at a group of adults with intellectual disabilities and say well here 20 is where they are, they are different in obesity rate, but why are they different? 21 We really can't get to the cause and effect until we start to look at this 22 prospectively. 23 24 So in the new centre we are really looking at Lakeshore serving as the national 25 practice centre of excellence, addressing the needs of the community with 26 disabilities in the country. And we shown it sets the benchmark in practice and 27 evidence based health information moving forward. 28 29 Three years from now we are hoping to have a national training institute in health 30 promotion and disability educating the national public health practitioner and health 31 fitness professions. And communities across America will adopt universal design 32 principles for accessible fitness and recreation facilities. 33 34 So spending the last three days and six-hours on the plane writing the paper for the Premier Captioning & Realtime Ltd www.pcr.ie 77 1 journal Lancet, I'm only a small pawn in serving you as community leaders who need to 2 be in Lancet and that opportunity to be in the journal is more for you than me, I'm 3 towards the twilight of my career, five or six years and I'll be done with it, but I 4 hope the article will lay the foundation in the sand and one of the high test levels 5 of journals and associations in the world that we can no longer think of Adapted 6 Physical Activity as a separate entity from inclusive physical activity, we need to 7 work together, we need them to understand our skill-set and we have to find political 8 and administrative and leadership ways to get us out of the classrooms and gymnasiums 9 in schools and into the community. 10 11 How we do that I don't know yet, because it does take someone to think through the 12 infrastructure of where most of us are housed. I know many of you in here are 13 perhaps not just employed by a school district, but you might have greater leverage 14 in your own communities, but for the most part in the US, when people are higher in 15 Adapted Physical Activity, they are generally hired in two settings, one is the 16 school setting, the other perhaps a residential facility where they are working with 17 adults or youths with autism or people who live in those residential facilities. 18 19 So with that, I would like to say I'm very sorry for speaking very fast, I know I 20 went through a lot of information, I mean all the criticism I have gotten for the 21 last 32 years, I promised I would try to change today, I haven't changed! So I want 22 to get at least this information to you and let you know our website is 23 www.ncpad.org, and if you have any questions or information or interest in becoming 24 part of the coalition, I'd be delighted to hear from you through that website or in 25 any opportunities during the next day or two when I'm here. Thank you for being 26 attentive. 27 28 MR O'FLYNN: Thank you Dr James Rimmer, what a passionate and fact based 29 presentation, fast yes, but there was a lot there. 30 31 In appreciation of your support for the congress we'd like to make a small 32 presentation, Linda Raymond has a presentation. Thank you very much. 33 34 Incidentally, before I let you go, just a couple of announcements, before I do, last Premier Captioning & Realtime Ltd www.pcr.ie 78 1 night I was researching Dr Rimmer, all I had to do is Google him, up comes some 2 information on you, then your centre and once you get anywhere near the centre 3 pop-ups start to come up with information on how you, me, everybody here can get 4 fitter, better nutrition, improve -- it's just a vast reservoir of knowledge, go have 5 a look, I recommend it. 6 7 Before I let you go some announcements, we have a packed afternoon, you are back here 8 at 4 pm for the keynote address of Dr Donna Goodwin, before that however there are 9 ten parallel sessions to choose from, five of them at 2 o'clock and five more at 10 2.35, please check the conference programme and pick the ones of most interest to 11 you. 12 13 There will also be a coffee break around 3 o'clock, if you have a poster presentation 14 can I remind you to please leave them up throughout the congress. People like to 15 browse them through today and tomorrow, also there will be an assessment again 16 through this afternoon's coffee break. 17 18 Later this afternoon we'll also host a mini symposium on European inclusive physical 19 education and APA VET, that's 5 o'clock, simultaneously that for those interested in 20 the Halliwick method there will be a repeat session with Ursula in the pool, that 21 starts at 5.15 please sign up at the desk. 22 23 While you are in the desk vicinity please also sign up for tomorrow morning's 24 orienteering trails in the national park, Tomas will bring a lot of materials, he 25 just needs to know numbers, if last night's Surf to Heal practical was anything to go 26 by I'd recommend it. 27 28 Lauren Lieberman's book is also on sale at the ITT desk, please drop by and have a 29 look at the -- 30 DR LIEBERMAN: It's not on sale! 31 MR O'FLYNN: Thank you very much, it's not on sale it comes out in September! Finally 32 we'd like your feedback, please fill out the evaluation forms, and drop them into the 33 registration and cultural desk. Thanks for your attention. What are you waiting 34 for, there are parallel sessions, go and work up an appetite for the banquet. Thank Premier Captioning & Realtime Ltd www.pcr.ie 79 1 you very much. 2 3 End of Presentation 4 5 Susan Marron: Figuring out yourself what to do. Pre-service teachers' perspectives 6 and needs related to teaching physical education to children with special needs in 7 primary schools. 8 9 MS MARRON: ...the definition that we have used for special education needs is taken 10 from the EPSEN Act and it is any child or adult with an enduring physical sensory, 11 mental health or learning disability that learn in a different way, possibly or need 12 different methods to learn compared to people without special educational needs, 13 we've outlined. 14 15 Now it's important to, even for the context of the audience that we have, just to 16 give a little bit of background here to what has informed our study and the Irish 17 element of it, the European agency has outlined and reported on the challenge of 18 dealing with diversity across Europe, and barriers have been highlighted, both in 19 Ireland and internationally, and in Ireland here I have quotes, Travers' study and 20 internationally, the European agency and the barriers that have been recognised 21 include the context of the school, conceptualisation of different roles in the 22 school, constraints in the education system, professional development and the 23 atmosphere in the school. 24 25 Bullet three points out, in Ireland we have gone -- we are about to go through 26 radical and exciting changes commencing this September in teacher education, 27 resulting from changes in national policy, responding to the changes that Ireland has 28 undergone in the last decade, which is diversified society and has implications on 29 education of children in terms of literacy, numeracy and inclusion and huge emphasis 30 was on those three areas by the Teaching Council. 31 32 Now a little about inclusion, particularly in relation to the Irish primary PE 33 curriculum, and the age group we are talking about is 4 to 12 years of age. 34 Premier Captioning & Realtime Ltd www.pcr.ie 80 1 Our curriculum, which was revised in 1999 speaks about the planning for the needs of 2 all children, creating a safe and secure environment, it talks about modifying the 3 skills and activities and equipment, as well as seeking specialist advice. 4 5 The National Council for curriculum assessment the main advisory body to the 6 government in relation to educational matters, published further guidelines to 7 enhance what is outlined in the curriculum. Addressing the needs of students with 8 special educational needs in curricular subjects including PE. 9 10 Meehan and McPhail acknowledged the usefulness of the guidelines in 2006, but 11 described the developments in Ireland for inclusion at the time as extremely limited, 12 however in recent years we have the development of the CARA centre here in Kerry, we 13 have the Irish Wheelchair Association that have provided a very useful resource for 14 teachers and student teachers, the Special Olympics have made a contribution and more 15 recently, further materials in the last couple of weeks have been developed by the 16 Paralympics in Ireland. 17 18 So we are progressing. Now in terms of the location of this study, for our 19 international guests we are situated here in Killarney and our college is up here in 20 Dublin and it's situated about two kilometres on the northside of Dublin City -- so 21 just here. And we are one of five colleges and we are probably one of the largest of 22 the teacher training colleges for primary schoolteachers. 23 24 Now the current provision in PE and in special needs, our current provision is the 25 degree at the moment is three years and the students would study 48-hours of PE over 26 the first two years. They are generalist teachers and expected to teach 12 subjects, 27 they are not specialist PE teachers. They have 13 weeks of school placements and 28 they also do a special education course of 24 hours in semester five, which would be 29 on the third year. 30 31 Our postgraduate students, who already have a degree, get a 24 hour PE course, they 32 get 12 weeks of school -- 11 weeks of school placement and in semester two they get a 33 12 hour special education course. 34 Premier Captioning & Realtime Ltd www.pcr.ie 81 1 Now this is a short film clip, three and a half minutes and it's used at our open day 2 to inform students who are thinking of entering the college of what we do, just to 3 put in context, particularly for people that mightn't know too much in Ireland about 4 the degree. 5 6 (Video played) 7 8 Now we also deliver in-service courses in the college to teachers, we deliver a 9 diploma course and masters and it's important as part of the context of this study, 10 because it does allow us more time to go deeper into subject areas. 11 12 Now how does the -- how do we provide for special education needs in our PE modules? 13 In the undergraduate course it's underpinned with key messages given the limited 14 amount of time we have, differentiation, adapting equipment, promoting group or 15 station teaching. 16 17 Our elective in third year, which is 48-hours, in which a small number can opt for, 18 we continue this focus, we also invite guest speakers with an expertise in adapted PE 19 and also in our masters course we have invited the following lecturers to present to 20 us as a staff and also to the students undertaking the course. 21 22 Now our future provision, which has been guided by the Teaching Council guidelines, 23 will allow for a specialism option in PE that a number of students can take up in 24 second year and it will give students a further 180 hours in PE. They will get a two 25 week placement in a special educational needs situation and also one of the changes 26 is that the special education module is moved to the first year of the degree, so the 27 students will get key messages embedded at a much earlier stage. 28 29 A key, a couple of key areas that are important is the promotion of reflection, which 30 underpins this study and a spiral approach to themes in which themes will be 31 revisited. 32 33 Now what does the literature tell us? We made a purpose of trying to find Irish 34 literature on what studies had been done, as well as international literature, and Premier Captioning & Realtime Ltd www.pcr.ie 82 1 the literature for this study examined what the teachers, as stakeholders have 2 experienced -- it was important what the teachers experience, because our students 3 end up going into schools being supported by the teachers. So the supports that the 4 pre-service teachers see being used by the teacher will have an affect on their 5 attitude. The insight of the teachers as well as experience of children with special 6 educational needs, needs to be heard to understand the needs of pre-service teachers 7 working along teachers in their placement. 8 9 We wanted to find out what pre-service supports they needed, in the literature we 10 found four areas. 11 12 The first was how pre-service teachers develop their knowledge and constructivist 13 theory underpinned the study. We particularly looked at the how teachers develop the 14 pedagogical content knowledge and hands-on experience was found to be important, 15 experience to teach special education needs students in a realistic setting, 16 collaboration with advisory bodies was highlighted in the literature and particularly 17 on campus practical experience rather than in a special needs school was found to be 18 very worthwhile and to have key messages embedded and infused throughout courses 19 across the programme, rather than just in PE or in the special education module. 20 21 So the attitudes of the teacher, they were highlighted yesterday in a presentation, 22 the crucialness of having positive attitudes and how do you develop positive 23 attitudes? And Avramidis, Davis and Burden said attitudes and values from the 24 knowledge, hands-on experience, school placement as well as course work. Other 25 studies reported factors contributing to positive attitudes and these including self 26 reflection and journal writing in courses undertaken in the college, the creation of 27 time and space for critical reflection, and Fitzgerald highlights what the students 28 see on their school placements, the ethos of the school that they go into and do they 29 value special education needs, because everything else should follow if there is a 30 positive mission statement towards the inclusion. 31 32 The third area we looked at was the supports for pre-service teachers on school 33 placements, so what did the teachers identify as the supports? Lamaster and Crawford 34 have spoken about teachers plan modifications to lesson plans, equipment and tasks. Premier Captioning & Realtime Ltd www.pcr.ie 83 1 Logan and Crawford spoke about teachers values, special needs assistants who support 2 the child initially in caring for the child, but the role has developed into an 3 educational role, unplanned for, but it has evolved for that, they also highlighted 4 more training was needed for better teachers and SNAs towards educating and caring 5 for the child with special needs. 6 7 What did the teachers themselves identify as worthwhile resources. The guidelines 8 that were produced by the National Council for Curriculum Assessment were useful, 9 professional development was highlighted particularly by Sweeney in a study 10 undertaken in Dublin with 125 teachers and 75 primary schools, they highlighted the 11 need for further professional development as well as DVD and resource material. 12 13 The fourth area we looked at was children's experience in PE because whatever the 14 teachers do, pre-service teachers, that's what influence the teachers. So Goodwin 15 and Watkinson explains children with special needs have good days and bad days, good 16 days where they were supported in what they did and felt good after taking part, bad 17 days when the teachers did not accommodate their needs. Important to highlight here, 18 what they highlight was the menial roles that sometimes these students were given in 19 PE lessons, and that was key to what we found. 20 21 Fitzgerald reported mixed feelings by students also in a study she did where she got 22 children to draw and interviewed them on the drawings. 23 24 Barriers reported to inclusion in class rise, low expectations. One example that was 25 a positive support was the training of peer tutors where one child is taught to help 26 another child and that was by Lieberman. 27 28 Now to get to the crucial part, what will our story tell you? Our study involved us 29 sending two e-mails to bachelor of education and graduate diploma students in August 30 last year. 31 32 It was actually sent to 860 students, we got ten responses! Now we didn't find out 33 formally why they didn't respond, but anecdotally we did. So anyway we took the ten 34 and we had three semi-structured interviews for 40 minutes and used member checks, Premier Captioning & Realtime Ltd www.pcr.ie 84 1 coding process, developed a list of categories and themes emerged from it. 2 3 What were the findings? The pre-service teachers spoke extensively about the 4 knowledge or lack of knowledge on inclusion to include children with special 5 educational needs in PE. It was more figuring out yourself what to do, or I had to 6 go and look it up. These pre-service teachers indicated with experience their 7 knowledge base and confidence grew on school placements from the perspective of 8 inclusion, in line with the findings reported by (inaudible) in Cyprus and Rovinyo 9 and Dolly. And the quotations to back that up, to be honest I do not feel that I 10 understood the differentiation until teaching practice, so that's value of the 11 hands-on experience. The first lesson was a bit nerve wracking but my second was so 12 much better, because I was able to communicate with them. 13 14 The pre-service teachers spoke extensively about how they tried to include the 15 children with special educational needs. It's important to highlight at this point 16 the age profile of these students, because they were from 18 years plus normally 17 entering into a college like ours. Many of the pre-service teachers, this is 18 significant, we didn't do an attitude test, but they have attended school in which 19 special educational needs students have been included in the school landscape, 20 special needs assistants have been part of the school landscape, so they were a 21 fabric of the landscape that these students had experienced at school themselves, the 22 findings from the interviews would appear to suggest that these pre-service teachers 23 accepted inclusion to underpin the teaching environment as can be inferred from 24 quotations. 25 26 "I was really afraid of marginalising her. If you are teaching maths there are 27 different people of different abilities, but it's kind of more hidden, whereas in PE 28 it's more public. I was really afraid and like I felt guilty.' 29 30 'I found myself really conscious trying to make sure that she got to mix with other 31 children." So they were very anxious to include the children. 32 33 The pre-service teachers questioned their own ability to include rather than the 34 actual practice of inclusion, Lamaster et al. in 1998 highlighted teachers feelings Premier Captioning & Realtime Ltd www.pcr.ie 85 1 of wanting to include all children yet feeling inadequate in the skills to include, 2 so that's really where they found a weakness. 3 4 The pre-service teachers spoke extensively about what supports were helpful in 5 schools on the placement, the crucial role of the SNAs was reported as also noted by 6 Logan and Crawford. The SNAs was really helpful in that kind of way, letting me know 7 what he was able to do and what he wasn't. However the timing of the PE lesson in 8 the school day could mean that the support of the SNAs was not available, when the 9 SNAs was not there it was hard to control him. 10 11 The teacher was reported as a valuable support, it would appear that the September 12 school placement placed the student at a disadvantage because it was September 13 teaching practice, which is the start of our academic year, so he, meaning the 14 teacher, had him for only two days before I started, so the teacher didn't really 15 know the child, which put the pre-service teacher at a disadvantage. 16 17 The pre-service teachers spoke extensively about the extent of children's 18 participation in PE lessons, it was clear that at times the children with SEN 19 identified in the study that the menial roles, but it would appear more out of 20 frustration by the pre-service teachers in lacking a repertoire of knowledge, skills 21 or even supports. I want to highlight some of the roles. In the last week he kind 22 of participated, but only a little, he would like in the second or third PE lesson he 23 did -- he asked could I do the music. 24 25 I got him to give out the bean bags just to be active, as he did not like being part 26 of the group, so to help him participate I would have ran along by him in the relay. 27 28 So in PE he went off, just did his own thing, he was doing some of the lesson, I just 29 kept going along, I would go over to him every now and again but he was not really 30 getting anything. 31 32 The pre-service teachers spoke extensively about their intentions to include these 33 children. And they learned a valuable lesson that on their observation day they 34 never asked the teacher what could they do to support the child. But they discovered Premier Captioning & Realtime Ltd www.pcr.ie 86 1 themselves after the first PE lessons if they asked the child, the child could tell 2 them, so they found the child to be the valuable resource. The child could tell me 3 what he could do and what he could do not. 4 5 Rust and Sinilokoh highlighted the socio-cultural element in the case, here you have 6 the communication and social skills of talking to someone else in advisory capacity, 7 pre-service teachers remarked on the key messages highlighted in PE seminars related 8 to differentiation and inclusion, but it was reported that: Until you are actually 9 in the scenario where you have a child in the class you don't actually take it in, so 10 back to the hands-on experience. 11 12 Now teachers also, these pre-service teachers to summarise the last slide without 13 going through the quotations, they wanted, they recognised that third year was too 14 late for the special education module, and they said, in the second quotation, they 15 wanted more information on the observation day, now they have learned to ask. One 16 teacher recognised that the footage idea, as in video clips, or even in the fourth 17 case, the scenarios, to make more reference in reference to scenarios would be 18 useful. 19 20 Having a reflection lecture, so the second last quotation, they may have taught the 21 same thing, so if you have a reflection lecture and bring them together after school 22 placement to talk and allow time to share their experiences was deemed valuable by 23 these pre-service teachers, and as advice for us. 24 25 And then finally, one student recognised given that our course was so intensive and 26 she said I know it's probably totally ridiculous to try and organise but a visit to a 27 special education school -- but I think a way of getting over that would be maybe 28 hands-on experience on campus in the college. 29 30 So what are the implications for education to avoid pre-service teachers figuring out 31 what to do or help them in the process? To prompt pre-service teachers to talk and 32 the lecturer to listen, which is what this study allowed, and also it brings us back 33 to Jennifer Harris's point this morning, by setting up this study it forced me to 34 listen and it allowed them time to share their experiences, which wouldn't have Premier Captioning & Realtime Ltd www.pcr.ie 87 1 happened really. 2 3 And for us and again looking at the literature and what they have said, to embed key 4 messages throughout the courses. To integrate more specific scenarios and more 5 adapted equipment into PE seminars, to highlight existing resources and even on our 6 Moodle page, where we have course notes, maybe to put a section in on special 7 education needs where we have the materials embedded in the school placement section. 8 9 To further inform pre-service teachers of specialist APE agencies and organisations 10 within Ireland that can be of help. And to provide more meaningful hands-on 11 experience, to plan reflective tasks and finally and most importantly to include 12 portfolio work with artifacts of maybe tasks that they undertake in relation to this 13 theme that they can put into their portfolios. 14 15 So thank you, I'm sorry now I'm down to one minute! 16 17 CHAIR: Thank you Susan, a very good overview of the current and future developments, 18 we have time for a couple of questions, if anybody would like to ask any? 19 20 Q. Thank you very much for your presentation, I wonder do you involve the children with 21 disabilities in the lecture or practicals? 22 MS MARRON: No, that's the answer. We don't. It's a very intensive course that we 23 do, because they are generalist teachers, because we only have 48-hours with most of 24 the students, they -- some of them come in from very competitive sports experience 25 themselves, some come in not even realising as teachers they are going to have to 26 teach physical education, so we have a lot of messages to get across in 48-hours, and 27 I suppose school placements at the moment are assumed to be the ground that they may 28 get hands on experience. 29 30 But in some cases the landscape in Ireland has again changed in the last ten years, 31 some don't even get much experience at even teaching PE, not to talk about teaching 32 PE to children with special educational needs on school placement. So it is an issue 33 that we have at the moment. 34 Premier Captioning & Realtime Ltd www.pcr.ie 88 1 Q. Just on the specialist options, what other options do they have outside of that 180 2 hours PE? 3 MS MARRON: This is only new, it hasn't come in yet, I might let Francis answer that. 4 SPEAKER: Just briefly, traditionally the options have been that they can study 5 English, history, geography, Irish, the good news from the point of view of people in 6 the room here is that they now have the option of taking a specialist option in 7 special education, so that is one option for them, physical education is another, 8 early childhood is another. So in answer to our own recognition of the needs of the 9 system and also the Teaching Council guidance, we have adopted courses that are 10 arguably more related to the needs of the system, i.e. special educational needs, 11 physical education, early childhood. 12 MS MARRON: It's a valuable progression for PE in Ireland that we have this scope in 13 teaching degree. 14 15 Q. In that special option of PE is there a much heavier emphasis on working with 16 children with disabilities? 17 MS MARRON: Yes we hope to infuse it more. 18 SPEAKER: So everything you do in the option you make it inclusive. 19 MS MARRON: Yes we hope to get children in and incorporate the practical hands on 20 experience. 21 22 Q. When will it become compulsory? 23 MS MARRON: The course is starting in September, going for three to four years and 24 post grad from 18 months to two years. 25 SPEAKER: It's important to point out, we are not out to prepare specialist primary 26 teachers, it's to prepare teachers who will be curriculum leaders in their schools, 27 they will still be classroom leaders, but a core group of teachers available to 28 schools who will have a specialism in this area. 29 MS MARRON: Or a teacher in the school that other teachers can go to for support. 30 31 Q. Of the -- just to follow on from the previous two comments, I work in CIT in Cork, 32 whilst I work with social care students we run a very successful model where we bring 33 adults with disabilities into our practical aspect of the course, now again they are 34 not specialists, obviously, in Adapted Physical Activity, but they would be Premier Captioning & Realtime Ltd www.pcr.ie 89 1 facilitators of recreational programmes and it works really well, the feedback has 2 been tremendous. 3 MS MARRON: You have to understand we have how many hundred students in September 4 that come in to us? We have about 300 per year, so to give them all in groups of 30 5 hands-on experience of adults coming in, isn't really realistic or to replicate -- 6 we'd need 12 groups of children coming in, in the week to that, to facilitate that 7 number of students. 8 9 Q. Is that a time thing more than anything else? 10 MS MARRON: Because they are generalist teachers they have 12 other subjects, art, 11 music, PE, we all have to be seen to be treated equally, so it's to get a mindset in, 12 that will be the difference in a specialist course or a more specialist degree, it 13 does give you that more. And we'll have that scope within the specialism in PE. 14 CHAIR: Thank you very much. 15 16 End of Presentation. 17 18 Ray McNamara: Physically Active Conference video 19 20 CHAIR: Good afternoon ladies and gentlemen, it is my pleasure to chair this session 21 with three young colleagues here from Ireland, I believe from the CARA centre in 22 Ireland that will be presenting us the work mainly, with three excellent videos, 23 first presenter is Ray McNamara from Mayo Sports Partnership, so please Ray, we are 24 excited to watch and hear what you have to tell us. 25 26 MR McNAMARA: Thank you very much, back in October 2011 I ran a conference in Mayo 27 called Physically Active, the objective of the conference was not just for people 28 like us, but for people with disabilities, for carers, for parents, to come along and 29 try something out, on the day we had a few talks from local leisure centre, which is 30 an inclusive leisure centre, Kayaction kayaking club in Mayo from Castlebar for 31 people with autism, we had the CARA centre here represented as well. 32 33 The conference, we had parallel workshops throughout the day from soccer to kayaking, 34 bocce, wheelchair basketball and an inclusive class setting that the leisure park Premier Captioning & Realtime Ltd www.pcr.ie 90 1 ran. Sit back and enjoy the DVD and this is just what happened on the day. 2 3 (Video playing) 4 5 MR McNAMARA: So that gives you a feel for what went on in the day, as you can see a 6 various range of sports were tried out, each participant had a choice to do two 7 parallel sessions, one in the afternoon and one in the morning, so just to give them 8 a flavour of something different. We also had a nutritional talk on as well, which 9 wasn't shown, and soccer, which wasn't on the DVD, as you can see the weather was 10 pretty bad and we had different stuff going on in different areas of the town, it 11 wasn't all in one location. 12 13 There was 120 people attended, the majority of them were actually participants with a 14 disability, some parents and some carers, and it went down very well. I suppose the 15 outcomes from it, most importantly is we now have maybe two people, members of a 16 local tennis club, we have a regular soccer session going and we do run soccer 17 blitzes after that that local clubs come to, our Bocce league is up to about 15 teams 18 now and we have also started in another area of the county, with a second league once 19 a month. 20 21 So the outcomes have been very good and thanks for listening. 22 23 End of Presentation 24 25 CHAIR: Thank you very much. Every time I see a video I think we shouldn't be 26 sitting in here, but do some activities, but I guess we would not be able to manage 27 everything. 28 29 I would like to introduce the second presenter of this session, Joanne Wall from 30 County Carlow sports partnership who will tell us something about the activities they 31 do over there. 32 33 Joanne Wall: Partnership; an approach to inclusive development. 34 Premier Captioning & Realtime Ltd www.pcr.ie 91 1 MS WALL: The video that we have shown today is based on a partnership between 2 myself, as sports inclusion disability officer and Carlow Regional Youth Services and 3 the importance of why all activities should be done in partnership with other 4 organisations. 5 6 It's coming from the perspective of the youth services, so the kids would have been 7 involved in making the video and along with the staff and then there is just parts of 8 the video where some of the young people give their impression on why inclusion is 9 important and at the end then we have one of the youth workers and why they now feel 10 partnership work is beneficial. 11 12 Excuse some of the shaky camera work, the young people got to do it, and just enjoy 13 it really. 14 15 (Video playing) 16 17 (Person videoing asks a child some questions on camera) 18 Q. Did you realise there were young people on the camp with disabilities? 19 A. No. 20 Q. So you wouldn't have realised? Okay that's good. So were you 100% comfortable on 21 camp? 22 A. Yeah. 23 Q. You were happy enough to play with any young person that was there? 24 A. Yeah. 25 Q. Do you remember there was one young guy there that had a wheelchair? 26 A. Oh yeah. 27 Q. Yeah, would you have felt comfortable enough playing with him? 28 A. No. 29 Q. Okay very good. 30 31 (Person videoing asks a child some questions on camera) 32 Q. Would you have felt comfortable being in the same group as them? 33 A. Yeah. 34 Q. Okay and you were in the same group with some people with a disability and some Premier Captioning & Realtime Ltd www.pcr.ie 92 1 people from the Rahingle community, so you had a lot of different things, a lot of 2 different cultural things going on there as well, how was that? 3 A. Good. 4 Q. Did you see any difference in the way kids play? 5 A. No. 6 Q. Okay. Did you find yourself getting frustrated with anybody because they weren't 7 running as fast as you or ...? 8 A. No. 9 Q. No. 10 11 (Person videoing asks a child some questions on camera) 12 Q. Do you think it was good to have them involved in the activities? 13 A. Yeah. 14 Q. Would you have learned anything from them? 15 A. Yeah. 16 Q. What would you have learned? 17 A. That people with disability can do things. 18 Q. Yes ... 19 20 MS WALL: It doesn't want to work. 21 22 CHAIR: Technology is showing us that it's tired and time for the next presentation 23 so thank you for this. 24 25 And we have remaining third presentation, there is a saying we saved the best to the 26 end I think, yes? I would like to introduce Phena O'Connor from DLR community who is 27 going to be presenting, the community 5K run 2011. 28 29 Phena O'Connor: Sports Inclusion in Action: DLR Community 5K – an example of the 30 inclusion of people with disabilities into a community sports event. 31 32 MS O'CONNOR: This is Dun Laoghaire/Rathdown sports partnership Flagship Development 33 event every year, we have over 300 people participating on a 5k, community 5k in one 34 of the parks in Dun Laoghaire/Rathdown, I work as the sports inclusion disability Premier Captioning & Realtime Ltd www.pcr.ie 93 1 officer so it's my job to make it as inclusive as possible to people with 2 disabilities. 3 4 Our role over the past four or five years have changed insofar as a lot of the groups 5 that we set up initially and worked with initially have now gone on to provide their 6 own programmes or setting up their own clubs, so a lot of the clubs that I would have 7 set up have now gone on to work on their work, they would use the 5k as a means of 8 fundraising for their own programmes or their own events, this is just a video 9 showing the inclusion on the day, and then with reference back to their club events 10 as well. 11 12 (Video Playing) 13 14 (Audio on video) 15 "We have Cabinteely athletics club, football club, An Garda Síochána and the HSE. 16 Mr McKenna: We are about to get started in the next half hour, touch wood the 17 weather is there we'll get different people from Dublin backgrounds. 18 Ms Fozzard: We are at the 5k today it's the first event of Social Inclusion Week, we 19 work on a lot of programmes to try and increase participation of people with 20 disability through sport and programmes, this is one of my key areas working closely 21 with Phena O'Connor and Sports Partnership we are able to increase participation of 22 people with disability. The 5k is a great example of that, we are hoping for 10% 23 participation of people with a disability, last year we had that as well, it's a 24 great opportunity for people with a disability to come out and participate with 25 people without disabilities.' 26 27 'We are starting off today with the DLR 5k and then we have other programmes during 28 the week, including other sporting programmes, there is the GAA inclusive games next 29 weekend, there is Enable Ireland doing games with people, there is also other events 30 that ethnic minority groups are coming to play sport as well. 31 Mr McKenna: In relation to work with sports partnership we work around the county, 32 there is dual access equipment in all facilities, we are trying to bring in as part 33 of fitness class programmes, to bring on the next step and the same with the halls 34 for Loughlinstown in particular, that we are adaptable for everybody's needs. Then Premier Captioning & Realtime Ltd www.pcr.ie 94 1 we develop a lot of programmes, working hand in hand, it's all about increasing 2 participation of people and also then as well about integration of people in 3 programmes as well.' 4 5 Q. Where are you all from? 6 A. Ballybrack. 7 Q. How did you hear about the event? 8 A. Through Phena through Dun Laoghaire/Rathdown, we do it every year, this is our third 9 time. 10 Q. Who will run and who will walk? 11 A. I'm going to win! 12 A. I'm going to crawl! 13 A. And I'm going to cry! 14 A. I'm a runner. 15 Mr Johnston: I'm not going to win but that's not going to stop me. 16 Ms Delamere: Well I want to beat Jonathan. 17 Q. He won last year did he? 18 19 Q. Where do you live? 20 A. Across the road. 21 Q. Are you running? 22 A. Yeah. 23 Q. Who is it going to win? 24 A. Me. 25 A. Me! 26 Ms O'Connor: My job in DLR Sports Partnership is sports inclusion disability 27 officer, it's my job to ensure as many people with disabilities as possible can 28 participate in sport and physical activity, this is one way we do it each year." 29 30 "Mr Johnston: There was a thing on in the Stillorgan Park Hotel and then there was a 31 thing involved, would anyone be interested in doing wheelchair soccer, I went up and 32 said I'll give it a go. 33 Mr Byrne: We are very much part of the awards night recently where two of our 34 players were honoured, one going away with the international team, just back from the Premier Captioning & Realtime Ltd www.pcr.ie 95 1 World Cup. 2 Mr Hayes: I took part in the world power chair World Cup. 3 Q. Where was that? 4 A. Over in France. 5 Mr Byrne: The World Cup was our first attempt at it and it was a very good learning 6 experience, just to see the game at that level is something else, but I have to say 7 that even seeing it at that level, from what we've learned from the knowledge we've 8 gained, each time we participate in future World Cups I think we'll progress up the 9 rankings. 10 Mr Ayton: It is great fun. 11 12 A. We heard about it because we all play Bocce with Phena on a Wednesday in 13 Loughlinstown and she gave us fliers, so we knew about it from there. 14 Q. We're in Loughlinstown Leisure Centre, these are the Bocce courts, this is where we 15 come every week to play Bocce. 16 17 Mr Madsen: I love playing the game, it's a good sport to play and it's good for my 18 arms and I love coming up on Wednesday and I love playing in competition. 19 20 Q. There is four teams here today, three from our centre in Sandyford and one from 21 Monkstown and we all train together. 22 Q. And the teams have names? 23 A. Yeah, one team is -- well the Monkstown team, Sandyford Steamers, Sandyford Hot Shots 24 and the third team, because they are only new they haven't come up with a name yet, 25 but we'll decide on a name before the league kicks off. 26 27 Mr Dormer: The other team, Sandyford Steamers they won the previous year, and there 28 was so many other people wanted to play Bocce we decided to start a new team called 29 the Hot Shots. 30 31 Q. We fund raised, we haven't a final in this year, last year we put some of the money 32 towards one of the ramps and a new set of the Bocce balls themselves and T-shirts for 33 playing in. 34 Premier Captioning & Realtime Ltd www.pcr.ie 96 1 Ms O'Connor: These are the only permanent Bocce courts to our knowledge in the 2 Republic of Ireland so we are very lucky that DLR installed them for us in 3 Loughlinstown. 4 5 Speaker: I won! 6 7 Speaker: I don't mind I came third, next year I'll be back, hopefully I'll get a new 8 power chair next year and I'll get my crown back next year, 2012. 9 10 Speaker: It's the first medal I ever won and it's not out of a joke shop, it's a 11 real medal! 12 13 Ms O'Connor: In this community or any community around the county may not be aware 14 that people with disabilities can participate in sport, so today is one way to 15 showcase what goes on." 16 17 CHAIR: Thank you very much. Well you see these energetic young sport disability 18 officers and unfortunately at this stage we don't have any time for questions, you 19 can see them and chat with them during today or tomorrow, so thank you again for nice 20 presentations and video and I would like to welcome you for the keynote lecture that 21 is starting any minute now. Thank you again. 22 23 End of Presentation 24 25 Jack loves to swim at the YMCA: Ethical reflections by Donna Goodwin. 26 27 MR O'FLYNN: Good afternoon everyone, welcome back, it's a long day but an 28 interesting one, you'll have earned your banquet this evening. 29 30 By way of some light relief let me tell you I have some good news and some bad news. 31 Do you want the good news or bad news first? 32 33 Too bad I'll give you the good news first! The good news is that we've solved the 34 mystery of the Lauren Lieberman book, it turns out one is out and one is coming out. Premier Captioning & Realtime Ltd www.pcr.ie 97 1 Lauren's book, this is it here, essentials of adapted physical education is available 2 now, her book that's coming out in September is, "Physical Education and Sport for 3 Individuals with Visual Impairments or Deaf/blindness, Foundations of Instruction." 4 That's available through American foundation for the blind, it will be available in 5 September, there are fliers out on the table, which will tell you about this one and 6 the September book coming out. 7 8 Do you want to know the bad news? We have a couple of copies of this, but one has 9 gone missing! So would the person who has taken it, presumably just to read for a 10 little while, could you please return it, it's meant to be a gift, but not for you! 11 Thanks very much folks. 12 13 By the way, just still on Lauren, Lauren will tomorrow, lunchtime, be teaching an 14 exhibition on ultimate Frisbee, it will be a practical exhibition so bring your 15 shorts, bring your runners, it will be tomorrow at lunch time, we'll have more 16 details later on. Thanks very much. 17 18 We welcome now another overseas visitor, our next keynote speaker comes all the way 19 from Canada, she is Dr Donna Goodwin, an associate Professor in the faculty of 20 physical education and recreation at the University of Alberta, she is also the 21 Executive Director of the Steadward Centre for personal and physical achievement, 22 that's a research centre that provides training and fitness, physical activity and 23 exercise for children, teen and adults with disability. She is here to talk to us 24 today about ethical reflections on a trip to the swimming pool. 25 26 Ladies and gentlemen, Dr Donna Goodwin. 27 28 DR GOODWIN: Well thank you everyone for being here this afternoon, I do know that 29 conference fatigue sets in! 30 31 I do want to say a very kind thank you for the invitation to come to Ireland, it's my 32 first trip here and it certainly will not be my last, I know I will be back for sure. 33 34 It's been a wonderful opportunity to reconnect with some long standing new friends Premier Captioning & Realtime Ltd www.pcr.ie 98 1 and make new friends while I have been here. 2 3 In thinking about being with you for an hour I wanted to make the time we spend 4 together as meaningful as possible, so I know that there are students present today, 5 I know that there are probably people here in professional practice, whether you be 6 working with not-for-profit organisations such as the Steadward Centre in Alberta, 7 whether you be teaching in a school system, whether you are a coach working with 8 athletes. I do know there are colleagues here working in the university system 9 preparing teachers and professionals and amongst us there are some outstanding 10 researchers, it's a difficult challenge to meet an audience like this. 11 12 But what I wanted to do today was share some of my reflections and recent thinking, 13 I'm going to be extremely vulnerable while I'm up here, because you are getting my 14 thinking out loud in some respects. 15 16 Much of my research has been involved in understanding one person at a time, in the 17 lived experience of those people who are disabled by those of us around them, due to 18 our actions or inactions. 19 20 I spent a considerable amount of time reflecting on inclusion as an ideology, but 21 also looking at what we have lost in this ideology by removing opportunities for 22 people with impairments to come together and share in their own experience. 23 24 I think about the lovely session that Carla did yesterday on sitting volleyball, a 25 lot of resonance there with some of the work that I have done in disability sport. 26 27 Now in contrast to Dr Rimmer's presentation of earlier today, James is changing the 28 world! And he is sending us home with that message to change the world. I'm going to 29 talk about one person's story. 30 31 We all live storied lives and I think by hearing the stories of others, they can 32 bring us one step closer to understanding their experience. But I think hearing 33 stories also helps us reflect on our own lived stories and perhaps cause us to 34 re-interpret their meaning. Premier Captioning & Realtime Ltd www.pcr.ie 99 1 2 I want to thank Susan Crawford for setting up my presentation so well, Susan was 3 talking about preparing Adapted Physical Activity students and the need for 4 meaningful reflection about what they are learning, but also how we are teaching, so 5 thank you Susan for doing that. 6 7 I'm going to share with you a story that was part of one of my doctoral students 8 proposal dissertations. 9 10 Keith Johnston, I know if Lauren is out there, Lauren knows Keith, Keith was involved 11 in helping Lauren do some research with Campabilities a couple of years ago. 12 13 Now I've got Keith's full permission to do this, because he is also presenting 14 himself, he is being, I would say, quite vulnerable in sharing his story. 15 16 We have co-created together, Keith and I, some of the ideas that we are sharing over 17 long discussions that we have had over the years. 18 19 My interest in ethics has come about by increasing discomfort that I have had with 20 Adapted Physical Activity and being perceived as the expert, again we heard earlier 21 today that really we are not the expert, it is the person who is being disabled by 22 socio-cultural phenomena that are the expert on their lives and this discomfort has 23 become increasing for me as I progress through my career, so again these are some of 24 my vulnerabilities. 25 26 But the connections across Adapted Physical Activity, disability and ethics are 27 complex. They are woven with the ideology, and intentions of normalisation, 28 inclusion, advocacy and care. My aim in doing this today is to bring some discussion 29 to bear on ethical issues in every day inclusive physical activity professional 30 practice, by asking the question: Is there a point at which practical problems 31 become of ethical concern? 32 33 So there is a number of things I would like to try to accomplish as we share this 34 time together. I want to talk about Jack's story, but to do that I want to position Premier Captioning & Realtime Ltd www.pcr.ie 100 1 a little bit within the concept and the construct of dignity. 2 3 I also want to look at Jack's story through the theory of relational ethics, to bring 4 an understanding of what transpired in the story that I'm going to share with you and 5 then hopefully bring it back together by looking at ethical practice in Adapted 6 Physical Activity. 7 8 So dignity then is commonly, is a commonly used expression and an issue that we would 9 all agree is important to our quality of life, however describing it in concrete 10 terms is difficult. It's as if everybody knows what dignity is, for many of us it is 11 a taken for granted notion, and only comes to consciousness when it is threatened or 12 denied, indeed people hold the ideals and principle of dignity as an innate human 13 experience. We value dignity as being important, indispensable and relevant to a 14 moral existence. 15 16 People become most acutely aware of their own dignity when it is threatened by the 17 acts and opinions of others, or by the circumstances of one's life. Consciousness is 18 raised when people find themselves in circumstances ill-fitted to their competencies 19 or circumstances in which they are normally capable, but fail to achieve what they 20 routinely would achieve. 21 22 Such circumstances can lead to feelings of worthlessness, humiliation, shame, 23 embarrassment and loss of privacy and control. We have all had these experiences. 24 25 It is also suggested dignity is experienced along a continuum, a person may lose her 26 dignity in a trivial way but easily restore it, seriously lose dignity it requires 27 substantial effort to restore it, or experience a devastating loss of dignity that is 28 impossible to regain without significant support. 29 30 It is surmised that the dynamic nature of dignity is he reflected in the experiences 31 of the dignified self and undignified self. 32 33 Fenton and Mitchell in 2002 helped us understand what underlined the dignified self, 34 a state of spiritual, emotional comfort with each individual values for his or her Premier Captioning & Realtime Ltd www.pcr.ie 101 1 uniqueness and with her or his individuality being celebrated. It is promoted when 2 individuals are enabled to do their best in their capabilities, experience control, 3 make choices and feel involved in the decision-making that underpins their lives. 4 5 The dignified self relates to individual and personal boundaries, containing positive 6 self beliefs, ideals for self and how one likes to be viewed by others. People 7 experience positive perspectives of dignity when their capabilities and competencies 8 can effectively be applied. 9 10 The experience of dignity is further influenced by social and environmental contexts, 11 as well as past experiences, to experience the dignified self, therefore three things 12 it is suggested need to be in place. 13 14 The social environmental context should be non-threatening and reflect values held by 15 those entering private and public spaces. Secondly, the content should be conducive 16 to maintaining individuality, advocating individual rights, increasing self esteem 17 and self worth and preventing suffering and pain, both physical and psychological. 18 And thirdly, the personal experience with making decisions feel physically and 19 psychologically comfortable in that context and being able to take control in the 20 setting supports the experience of the dignified self. 21 22 It is also suggesting that giving oneself to another without the need for repayment, 23 while appreciates commonalities and differences across people, promotes an internal 24 sense of the dignified self. 25 26 For some reflection we can all recall personal stories of when our dignity became 27 conscious to us, when our self-esteem, self-worth or pain and suffering were 28 exaggerated through our own acts or the acts of others, for many of us experiences of 29 dignity are transitory and we recover quickly. For others personal indignities can 30 occur on a daily basis in ways that we cannot personally comprehend or appreciate. 31 32 The undignified self is illuminated in the work of Griffen Helslin, who suggests 33 dignity is at risk when unintentionally overlooked, especially when people feel 34 vulnerable. Premier Captioning & Realtime Ltd www.pcr.ie 102 1 2 Negative feelings of the self that lead to experiencing the undignified self can be 3 triggered in a number of ways, including not being recognised, that is being ignored 4 or talked over, being seen only as a member of a group which denies our 5 individuality, so speaking about "The disabled." It can occur when individual 6 personal space is entered into without express permission or for example help is 7 thrust upon someone without concept. Or when we are humiliated and criticised for 8 being outside of the perceived social norms. 9 10 Shannon in 2007 presented at a EUFAPA conference in Canada where Keith and I were 11 both attending, which precipitated some of our thinking. He is a lawyer that looked 12 at dignity through the law, but he is also a person who experiences disability. 13 14 So Shannon suggested dignity for persons with disability must be pursued as a 15 meaningful goal that enhances society in general, not just the lives of the disabled 16 person. He proposed six degrees of dignity to the utilised to effect social change 17 listed here. Public perception, the increased awareness that dignity, that can 18 increase dignified opportunities for others. The community he suggests where 19 increased community autonomy leads to interactions of choice. In the law, which 20 promotes and protects the rights of others through legislation. 21 22 The self, where individual choice and decision-making promotes a positive identity of 23 dignity. 24 25 Public policy, where enhanced rights and freedoms towards equitable support can 26 occur. And he looks to the future and the creation of a model with legal, social and 27 policy initiatives that challenge exclusion and bring opportunities for self 28 determination. 29 30 So I'm now going to turn to the story with that bit of background that Keith shared 31 about Jack. 32 33 It was interesting, Keith opened his dissertation proposal with this narrative piece 34 of writing and we went into his kinesi examinations, there was a lovely discussion Premier Captioning & Realtime Ltd www.pcr.ie 103 1 with the committee members about the story of Jack. It couldn't have been better for 2 Keith to enter into an examination with that level of engagement in his work, in his 3 thinking by his committee members. 4 5 Jack's story is not a story of temporary bruised dignity, dignity that is quickly 6 recovered, this is the story that reflects a life marked by on-going and at times 7 very brutal removal of dignity. 8 9 Keith has given his full concept for me to share this story. I will caution you that 10 I will respect the authentic language that is expressed in the narrative, so these 11 are Keith's words. 12 13 "Throughout my life I never thought much about dignity and for most people the same 14 could be said. It was not until I began to work with persons with impairments that 15 the issue of dignity presented itself, but even then I fail to recognise its 16 significance, within my own life and that of the lives of persons with impairments.' 17 18 'I often revisit a moment in my past when I witnessed violent stripping of dignity 19 from someone under my care. I recount this story now to shed light on the importance 20 of dignity to person's lives and the need to not only consider it from a research 21 perspective, but also from one of human justice.' 22 23 'Working as a part-time special services at home worker with children and youth with 24 impairments was an extremely important time in my life. It provided me with a great 25 opportunity to understand the challenges individuals with impairments experienced 26 while I provided support to families.' 27 28 'As a special services worker my goal was to provide opportunities to be physically 29 active and engaged in community programmes and activities. Over the course of five 30 years I got to know many children and youths on a personal and professional level.' 31 32 'I considered many to be friends. There was one individual I got to know extremely 33 well, Jack. He had been given the diagnosis of Autism Spectrum Disorder very early 34 in life. And I never really thought much about the diagnosis or label, I focused on Premier Captioning & Realtime Ltd www.pcr.ie 104 1 the things we had in common.' 2 3 'Even though I was a paid employee, I looked at our time together as two guys having 4 fun, hanging out and being active. Going for a hike along the Niagara escarpment, 5 swimming a few laps in the pool at the Y or heading to a restaurant to grab a burger 6 and fries.' 7 8 'Jack was nonverbal to me, it did not matter, over time I began to understand his 9 body language, eye movements, hand gestures and vocal queues that he used to express 10 himself.' 11 12 'We found a shared common ground for communication and a mutual understanding of our 13 needs and desires. When Jack would become excited he would begin to make very loud 14 vocal signs, it was just Jack being Jack. It was a part of who he was.' 15 16 'His vocalisations occurred not only when he was happy, but also when he was unhappy, 17 or sad.' 18 19 'Like all people Jack had his favourite activities and swimming was one of them. It 20 was during a swimming trip to the local YMCA that I came face-to-face with a 21 realisation that people saw him differently than did I, and treated him accordingly.' 22 23 'We had just finished swimming and were on our way to the locker room, Jack became 24 incredibly excited and began expressing himself the way he does. He knew exactly 25 where we were going next, and he loved going there. McDonald's. For salt laden 26 fries and chicken McNuggets with plum sauce.' 27 28 'On this occasion he was more excited than usual and began jumping up and down waving 29 his arms, he was extremely energised and animated, I could understand why, it was 30 over a month since we visited McDonald's. On numerous other occasions he vocalised 31 in this way and I really thought nothing about it. In all honesty I was pleased that 32 he was so excited.' 33 34 'He had a way about him that was infectious, he could always bring a smile to my Premier Captioning & Realtime Ltd www.pcr.ie 105 1 face. To give a little background, Jack was well liked by those who knew him. When 2 he would run into people who knew him they would greet him, most people at the YMCA 3 where he swam knew Jack and were very friendly and courteous to him.' 4 5 'However this particular trip there was an older gentleman in the changing room who 6 seemed to be extremely annoyed and upset by Jack's behaviour and my lack of effort to 7 "control" him.' 8 9 'The person walked directly up to me and Jack, looked directly at me, ignoring that 10 Jack even existed and began to say in the most hateful and annoyed tone of voice 11 "Fucking shut him up" at first I was taken aback by what the person had said, in all 12 reality I was shocked, stunned. I had never before been approached in this manner 13 when I was with Jack.' 14 15 'Come to think of it, I cannot recall this occurring on any other occasion, in the 16 most timid voice I could muster, my response was "Yes, sir, sorry sir." I truly did 17 not know how to respond or react to this situation, nothing in my professional 18 experience, my education or my knowledge prepared me for this event, I was completely 19 intimidated and I felt like I had been berated for doing something wrong.' 20 21 'I had been made to feel less than and I was, spoken down to by a person of presumed 22 authority. It is said we tend to feel a loss of dignity when we are made to feel 23 less than or humiliated. I did feel less than of an individual. It made me feel 24 small, insignificant or incompetent. However this story is not about me it's really 25 about Jack.' 26 27 'It was his experience that weighs heavily in my thoughts, Jack may not have been 28 able to verbally communicate, but he was very astute as picking up other's reactions 29 and expressions.' 30 31 'Immediately after the individual yelled at me and walked away I looked over towards 32 Jack and saw a drastic change in his behaviour, demeanour and posture. He was no 33 longer excited, he immediately stopped jumping, waving his arms and vocalising his 34 earlier excitement.' Premier Captioning & Realtime Ltd www.pcr.ie 106 1 2 'I sensed that something was terribly wrong. His body slumped down onto the bench, 3 his shoulders wilted forward and hung like a gigantic weight had been placed upon 4 him. His hands rested on his lap where he began to weave his fingers together in a 5 fidgeting motion, I had seen him do this before when he was experiencing anxiety or 6 stress. It was his way of coping.' 7 8 'However it was his face that I remember the most. I saw the greatest pain and 9 sadness. I will never forget his face on that day. He looked up at me, the smile 10 was gone, vanished as if it had never existed, his face was blank but the look in his 11 eyes communicated a level of hurt and sadness I had never seen before.' 12 13 'Within his eyes I could see him questioning me, why? What did I do? At the time I 14 did not know what to say or how to answer or how I could take the hurt away.' 15 16 'At the time I never really analysed the situation or tried to understand it. In all 17 reality I hid it away. Now I realise what a mistake that was. Of course I was upset 18 for the way Jack and I had been treated by this individual, but I chalked it up to 19 the person not knowing or understanding much about autism.' 20 21 'To me this represented the negative attitudes people can hold towards persons with 22 impairments, that I had learned about in my undergraduate course on disability and 23 Adapted Physical Activity. As I revisit this story now, I have come to realise that 24 much more had taken place, as I peel away the layers of the experience and delve 25 deeper into the meaning, I realise something greater and far more devastating had 26 occurred.' 27 28 'I did not know it or realise it at the time, but Jack had undergone a violation of 29 his dignity. He had been made to feel as if he was less than. Not deserving of the 30 same respect or status as other individuals in the change room.' 31 32 'In looking back I now understand that Jack's dignity had been violated, the 33 individual in the change room had ignored Jack's humanness, by addressing me, making 34 the assumption that Jack would not understand the meaning behind the tone of the Premier Captioning & Realtime Ltd www.pcr.ie 107 1 confrontation or could not communicate for himself. The individual looked at and 2 focused directly on his perceived differences and never once considered the 3 similarities that might have existed between him and Jack.' 4 5 'Thinking back to this day, I know now I would have responded differently if this 6 were to occur again to Jack or anyone. My experiences brought to light the need for 7 me to understand more, deeply, the construct of dignity and how it is experienced." 8 9 So how do we make sense of Jack's experiences? How do we make sense of the 10 stranger's very strong emotional reaction to Jack and to Keith? What about the 11 onlookers in the locker room, what were their experiences? 12 13 So in speaking with Keith we travel the experience not only from the perspective of 14 Jack and Keith's perspective, but also the others engaged in bringing this experience 15 about. 16 17 So we basically did a thematic analysis, line by line of the story Keith had shared 18 with us. 19 20 We have Keith's lived experience, what I'm going to share with you in addition to 21 Keith's experiences is something theorising around the experiences of Jack, the 22 stranger and the onlookers in the locker room. 23 24 This is what we came up with. So we have a theme of Jack being Jack, he was 25 animated, excited to the point that his behaviour could be infectious, his body 26 language, hand gestures and vocalisations to communicate, he was like all people, he 27 had his favourite activities, he loved to swim and loved to grab some fast food. He 28 enjoyed Keith's companionship as it afforded the opportunity for recreational and 29 social outings. His expressions of pleasure however within the specific context 30 could be considered outside the social normal for adult behaviour. 31 32 Jack was autonomous, he expressed his likes and expressed his dislikes and he was 33 astute to the communications of others. But we also saw that he was very saddened by 34 the experience, he understood the rejection of the stranger, he was hurt and he was Premier Captioning & Realtime Ltd www.pcr.ie 108 1 confused, he had been berated through Keith. 2 3 We wonder also if he was not saddened that Keith had not stood up for Jack? That his 4 personhood had been ignored, perhaps not only by the stranger, but also by Keith. He 5 was not respected as a person. His dignity had been stripped. 6 7 We also see that Jack's response was one of being submissive, he stopped his animated 8 vocal behaviours and body language. He acquiesced to the stranger's demands to stop. 9 He behaved in a way consistent with the situational events, he sat down and became 10 quiet, did he not become aggressive and he did not strike back. 11 12 So returning then to the definition of dignity, Jack was in a state of dignity when 13 he entered the facility, it was non-threatening, it was supportive, he felt self 14 esteem, he was physically and psychologically comfortable in that space that he was 15 visiting again. But he was not in a state of dignity when he exited. 16 17 We do not know how Jack felt returning to the YMCA next Sunday, was he anxious? Did 18 he fear he would encounter the stranger again? Was he physically and psychologically 19 comfortable returning? We can only speculate. 20 21 What about Keith's experience? Keith was in relationship with Jack, he didn't think 22 much about the diagnosis or label he had been given, but definitely Jack was in 23 Keith's care, he played the role of leisure staff and yet they were just two 20 24 something guys hanging out doing something they enjoyed together. They had common 25 interests and Keith was very pleased with Jack's animations and he could see that he 26 was glad to see him and the social outing coming up. In fact Keith had said he 27 valued Jack as a person with agency. 28 29 One of the things that was clear to us into the story that Keith shared was that the 30 element of time, it took time for Keith to understand Jack's communications. Over 31 time people came to know Jack at the YMCA where he was afforded affectionate 32 interactions from staff. Jack was especially animated due to the length of time it 33 had been since they had been to McDonald's. Through time he had anticipation for the 34 delicious experience that was about to come. Premier Captioning & Realtime Ltd www.pcr.ie 109 1 2 And the proximity of the verbal attack that was to come was over in an instant and in 3 fact it had taken Keith five years of his time to get to know the people that he had 4 worked with as a support worker. And yet again it was a watershed moment that 5 stripped the dignity from both Keith and from Jack. So Keith reminds us that he had 6 never really thought about dignity before and he failed to realise its significance, 7 yet the silence of dignity was broken by the encounter. Keith was shocked by the 8 viciousness of the attack and confrontation, both verbally and in proximity. 9 10 The stranger stole the pleasure of the swimming context from Jack and from Keith and 11 it put them both in a state of distress, nothing prepared Keith for his response to 12 the situation. 13 14 Keith indicated that he recognised the age of the stranger and that he was from a 15 generation that was perhaps unfamiliar with the ideology of inclusion and this may 16 have contributed to the strengths of his emotional response. 17 18 But there was fallout to this momentary experience, Keith gave a respectful response, 19 he acknowledged the stranger and diffused the situation to protect Jack from further 20 assault. Keith's goal was to remove Jack and himself from this offending individual 21 and the context as soon as possible. He felt chastised and his professional 22 competence questioned, he felt it was unfair and it was punitive. He was left 23 feeling that he was wrong. He felt a victim of the imbalance of power. 24 25 This one story changed Keith's life forever. And it was only now that he is in a 26 place professionally and personally to revisit it and see the impact that it had. 27 28 So again if we return to what we understand dignity to be, Keith entered the facility 29 in a state of dignity, but he left it in a state of indignity. Keith was better 30 prepared to restore his dignity than Jack, we would suggest, but we wonder what the 31 short and long term influence this experience had on Keith as a young professional, 32 again we are left to speculate. 33 34 Now the stranger. We felt there was an experience of anger and we tried to Premier Captioning & Realtime Ltd www.pcr.ie 110 1 understand his anger, perhaps he was angry because he felt uncomfortable due to 2 Jack's presence. 3 4 He was angry perhaps a person like Jack was let into a public setting. Jack had 5 unexpected behaviours and perhaps perceived to be disruptive behaviour, he was making 6 a scene. Jack had interrupted his routine, he had come in perhaps to have a relaxing 7 work out and leave refreshed. 8 9 And yet the stranger felt a need to intervene. He himself created an emotional scene 10 on top of the emotion that Jack was creating. We wonder if fear was part of the 11 experience? 12 13 We wondered whether he thought that perhaps Jack's behaviour would escalate if he 14 wasn't stopped or that he wasn't sure how to interpret Jack's vocalisations, he had 15 no life experiences in which to interpret what was happening. Perhaps he was being 16 intolerant, he was intolerant of Jack and his behaviour, he was intolerant of Keith's 17 perceived lack of competence in not being able to "control" Jack. And he was 18 intolerant of any need or desire to understand the context. 19 20 He certainly did strike out and it was a violent attack, it was violent in that it 21 was a verbal assault directed at Keith, about Jack, it was a violent attack brought 22 about by strong, emotional response, some would say he was bullying. 23 24 We wondered whether he felt he needed to assume authority. He had chosen to 25 intervene to take control of the situation, he chose to stop Jack's emotional 26 display. He assumed a position of authority, perhaps because of his age and he 27 exercised that authority over two younger men. He certainly had the experience of 28 silencing Jack. Did he not look at Jack, or address Jack, but did it through Keith. 29 30 Perhaps there was the assumption that Jack would not understand, or that Jack was not 31 worthy of the interaction, in fact that Keith was in charge of Jack. So there are 32 some tensions that we feel in the story, the stranger's behaviour in fact was as 33 extreme as he may have perceived Jack's behaviour to be. 34 Premier Captioning & Realtime Ltd www.pcr.ie 111 1 He had a strong negative emotional response to Jack's strong positive emotional 2 response, the stranger created a negative scene to stop a positively motivated scene. 3 And we have questions. Would the same level and nature of intervention have been 4 used against a parent of a disruptive child in this context? What assumptions would 5 work? 6 7 So what motivated the stranger's behaviour? Could it be that the stranger felt his 8 dignity been removed, and he was uncomfortable having to witness Jack in his excited 9 state? Again we return to the definition of dignity, the stranger was in all 10 likelihood in a state of dignity upon entering the facility, non-threatening, it 11 supported his self esteem and he was physically and psychologically comfortable. But 12 was he in a state of dignity when he left the facility? We'll return to that 13 question. 14 15 Then there is the onlookers, Keith does not speak about the onlookers in his 16 narrative, but the locker room was full. He described lots of naked men and lots of 17 men with towels around their waists, so we wonder what were the onlookers experience 18 in this transaction? 19 20 Perhaps some of them applauded the actions of the stranger, they were pleased 21 somebody came forward to stop Jack's behaviour, they concurred he was making them 22 uncomfortable and behaving inappropriately. 23 24 There may have been some in the room appalled and felt sorry for Jack and Keith to 25 undergo such an attack. Or perhaps they were apathetic, they quickly dismissed the 26 event and no reflective thought. Although we also wonder if there was a level of 27 being uncomfortable, whether they questioned the need for such a strong action and 28 reaction by the stranger. 29 30 Perhaps they didn't know how to respond to the situation, should Jack be present? 31 Should he not be present? Perhaps again they would be nervous that the stranger, 32 Jack and Keith would be in one another's presence next week at the pool. 33 34 So it is pure speculation as to what the onlookers experienced, was their dignity Premier Captioning & Realtime Ltd www.pcr.ie 112 1 threatened? What did the meaning hold for them? We don't know. But we do know that 2 they were part of the experience and their presence was a variable in the event. 3 4 So again how do we make sense of this story shared by Keith? What would we say to 5 young professionals who share the story such as this with us? 6 7 We could say, been there, done that, you'll get over it. We all run into people like 8 that some time or other, or perhaps we could suggest that no you need to stand up to 9 bullies like that, they have no right to attack Keith or Jack in that manner, don't 10 let them get away with it. 11 12 Maybe we could suggest that in such situations the stranger should be reported to the 13 YMCA staff and a note put on his membership file, or perhaps another swimming venue 14 should be located for Jack and Keith. 15 16 And finally, perhaps Keith's response and Jack's response were entirely appropriate 17 for the situation. What is the correct answer to what should they have done? This 18 is the question of ethics, what is good and right, what is bad and wrong. 19 20 So if we look at the implications of the actions taken we can see that we've got four 21 people or four groups involved. We can see the positive side of the responses taken 22 but we can also see the negative side, so what is good and right, what was bad and 23 wrong. 24 25 So if we look at Jack, he brought the exchange to a quick end, he did he not escalate 26 his behaviour and he communicated his understanding of the stranger, but on the 27 negative side he acquiesced to a brutal attack, he saw the fault as his own and not 28 that of the stranger and he assumed a status of victim. 29 30 Keith on the positive side, he also de-escalated the situation, he protected Jack 31 from further assault, he didn't get pulled into a non-productive exchange with the 32 stranger and he was respectful of the stranger's generation and understanding. On 33 the negative side perhaps he was complicit with the assumptions held by the 34 strangers, he let Jack down, he didn't advocate, he appeared incompetent or derelict Premier Captioning & Realtime Ltd www.pcr.ie 113 1 in his duties, but Jack would get over it and move on quickly. He also did not stand 2 up for himself as a young professional, he saw the fault as his own and not that of 3 the stranger. 4 5 The stranger on the positive side perhaps felt he was speaking on behalf of the group 6 in the locker room, he brought decorum back to the setting, he handled the situation 7 quickly and definitively, he communicated with Keith that he was being neglectful of 8 his responsibilities. On the negative side however, he verbally assaulted Jack and 9 Keith, he subjected everyone to a highly emotional and negative confrontation, he 10 responded to the situation through violence rather than relationship and he violated 11 the decorum of the locker room that he himself thought perhaps Jack was violating. 12 13 One thing we can say about the interactions that were shared in the locker room on 14 that day is there was no opportunity to build relationship or understanding, it may 15 have not been the place to do so, perhaps reflecting deeply on the event we can learn 16 about ourselves and what we need to do to support our students in understanding what 17 dignity is, when it is threatened and how it may be restored, thereby creating a 18 space for relational knowing. 19 20 I have a growing interest in applied ethics and it's role in professional practice in 21 Adapted Physical Activity, was it ethical for Keith as an undergraduate student in 22 Adapted Physical Activity to feel totally unprepared to respond to the event he 23 encountered in the locker room? The question I ask myself and now I pose here, are 24 we creating spaces in our classrooms to discuss ethical issues? How do we bring a 25 structure to those questions of ethics? 26 27 For me, the area of thought termed The Theory of Relational Ethics has brought 28 clarity to ethical practice, so relational ethics therefore may provide a lens to 29 which to bring the answer -- to begin to answer the question of how we can increase 30 our sensitivity to ethical issues, by focusing on what relationships are about, how 31 they are created, what they mean and how they are sustained. 32 33 So relational ethics comes out of some work by the Dossetor Centre in Alberta, they 34 have a lovely book on which this next bit of material is based. But relational Premier Captioning & Realtime Ltd www.pcr.ie 114 1 ethics places a high regard on building relationships and contextually informing our 2 actions within a relational ethics framework. The traditional understanding of 3 autonomy or being free from interference is reconceptualised to reflect the deeply 4 interdependent existence of humans. A focus on individual autonomy is broadened to 5 include social relationships and the power structures that give genuine opportunities 6 for choice and the goal of achieving meaningful self direction within the overall 7 context of interdependence. 8 9 Ethical moments become possible when people connect with one another and create a 10 relational space of trust and become authentically receptive to the interface of the 11 everyday existence of shared physical and social worlds. 12 13 At the root of relational ethics lies the ethical commitment to create a relational 14 space for discovering knowledge about others through dialogue and sensitive 15 interaction. 16 17 So there are four things to relational ethics as you see here, mutual respect, 18 engaged interaction, embodiment and creating environment where freedom of choice are 19 found and these are necessary for relational ethics to flourish. 20 21 So respect for self and respect for others encompasses the theme of mutual respect. 22 Mutual respect provides the ethical space to explore differences between individuals 23 in an atmosphere of interdependence. 24 25 Personal responsiveness, true presence and empathy are required for engaged 26 interactions with others, enables strangers to engage in relational and emotional 27 interactions. 28 29 Embodiment acknowledges the interconnection of the feeling body and the thinking 30 mind, which recognises that people have storied lives set in historical and social 31 contexts. Knowledge and compassion are equal status with feeling and emotion in the 32 embodiment of relational knowing. 33 34 Finally the theme of environment ties the relational space of individuals to a Premier Captioning & Realtime Ltd www.pcr.ie 115 1 network of relationships within community, within services and beyond, giving 2 consideration to the social and political context of the community in which a person 3 finds her or himself. 4 5 So turning back to Jack and the stranger. If we look at mutual respect, given the 6 verbal assault on Keith and Jack, did the stranger have respect for himself? If he 7 did, would it have been possible for him to have such a strong emotional outburst? 8 If you do not respect yourself, can you move to a place where you can respect 9 another? 10 11 So did the stranger respect Jack? Was there the creation of an ethical space for the 12 understanding of commonalities and experiences of interdependence? I think the 13 answer is pretty clear. 14 15 Engaged interactions; if we think about Jack and the stranger, interactions take time 16 and commitment to develop, a brief locker room encounter did not afford the time for 17 the stranger to have engaged interaction with Jack and to bring a new level of 18 understanding, trust or empathy, to expect more may have been inappropriate. 19 20 If we think of embodiment then, what was it in the stranger's storied life that 21 caused him to have such an outburst? What did Jack's presence trigger from his past 22 or his understanding of social norms and decorum that caused him to react in such a 23 way? 24 25 And if we look at the environment, what was present or absent in the environment that 26 enabled this event to transpire and what did it say about the context of the 27 community as an appropriate place for Jack and Keith? Was this a space that could 28 become a dignified space and what would it require and what would be the cost? 29 30 I want to bring us back to thinking about ethical practice in Adapted Physical 31 Activity, so we've looked at the framework of dignity, looked at the story of one 32 young man in one context, we've looked at perhaps relational ethics as way of 33 providing a framework for thinking deeply about these kinds of experiences and 34 perhaps asking our students to also think about how they would respond, what is good Premier Captioning & Realtime Ltd www.pcr.ie 116 1 and right, what is bad and wrong in a context. 2 3 I hope that by looking at all four of the experiences that were present in that room 4 that we don't think negatively about the stranger immediately, but that we try and 5 reflect on what was it in the context, what was in the environment that might have 6 precipitated that and was there any other solution to that situation than "Yes, sir, 7 sorry sir". 8 9 So ethical thinking occurs all the time as widely construe to underscore the 10 structure of our engagements with others, as we think about what we do, what we think 11 and how to react. We cannot avoid moral issues as we inevitably will act in ways 12 that will negatively effect the well-being of others, it's unavoidable. We'll make 13 choices which in our efforts to support others may hurt by violating dignity or 14 infringing on people's rights. 15 16 So what does ethics mean to our professional practice and our professional 17 development? Professional practice is defined as a coherent socially organised 18 activity, with notions of good practice within the practitioner's understanding of 19 skill are important. A practice has shared understanding about goals, skills, and 20 equipment and is continually being worked out in new contexts. 21 22 I'm suggesting that there is a need for an ethical term in Adapted Physical Activity 23 and this need has arisen because of a recognition of poor outcomes for professional 24 practice in Adapted Physical Activity for people with impairments. 25 26 The lack of ethical self analysis may well be rooted in our own fear, our fear of 27 facing our motives and our experiences that may have resulted in pain, guilt, danger 28 even, doubting in ourselves and that of ours. 29 30 But I think we can take the ethical concern forward because we have now had 31 advancements in the post modern research approaches and we can capture these stories 32 and use them to further our understandings of self and others. 33 34 But there is a caution in a recent trend, I would say, in Adapted Physical Activity Premier Captioning & Realtime Ltd www.pcr.ie 117 1 towards evidence based practice and if we use evidence based practice, as it's 2 understanding in biomedical research, it can silence these voices and the experience 3 of practitioners and persons with impairments. 4 5 Not everyone is prepared to reflect on pedagogy tradition and we have a lovely 6 tradition of adapted physical activity, in fact I have had a little push back on my 7 thinking and my shared vulnerability today, I was invited, as I shared with David 8 Howe earlier this conference, to present at a session in North America when I sent in 9 my abstract around applied ethics in Adapted Physical Activity practice, it was sent 10 back to me and I was asked if I had something else. 11 12 I have also got another paper under review, this is a second level of review, and 13 this reviewer just before I got on the plane said that I was being arrogant, as was 14 that of my co-author. So I haven't really digested that, the conference came at a 15 good time, so I can reflect on where the author sees the arrogance in questioning and 16 being self reflective as a field. 17 18 So not everybody is prepared to reflect on the pedagogy set in tradition. 19 20 So I ask does our work merely become technical allowing for judgments of whether it 21 is done well or badly done, but seldom enabling us to judge whether it was right or 22 wrong bringing our integrity and professional dignity into question. Some of my own 23 research in Adapted Physical Activity highlights exclusion due to our taken for 24 granted best practices in such areas as instructional tutors, peer helpers and 25 supervised leisure. 26 27 In an article titled "Too Posh to Ponder", actually it's the ethics of the every day, 28 problems that Professors are too posh to ponder, the authors ask if perceptions of 29 good practice replace ethical discussion? And whose responsibility is it to open 30 that dialogue? Universities play an important role in understanding ethical dilemmas 31 that might contribute to professional misbehaviour, and it is our social 32 responsibility, I contend, to bring attention to professional ethics. 33 34 Classrooms are pedagogical places for discussions of historically ethical Premier Captioning & Realtime Ltd www.pcr.ie 118 1 discussions, what has been called the third space, is available to our classrooms, an 2 environment in which to grapple with concepts not studied elsewhere. 3 4 So the framework of relational ethics or perhaps another theoretical ethical 5 framework may provide a lens in which we can reflect upon professional practice and 6 enhance the preparation of professionals of our field. 7 8 In working alongside fellow practitioners in our professional practice we come to 9 learn about our profession, within this landscape there is a dynamic interplay 10 between professional and practical knowledge, professional knowledge is comprised of 11 traditional world of practice, the stories and information of what is right, given 12 theory driven views of practice and this is often reinforced by those of us who are 13 Professors at universities, those of us who are policy makers and indeed 14 administrators. 15 16 The professional knowledge landscape becomes the sacred story that tells us who we 17 are to be and what we are to do. 18 19 The practical knowledge is comprised of the stories that we create through our 20 professional practice as teachers, as instructors, as coaches, it is the place where 21 people are generally free from the scrutiny and lived stories of practice, it is a 22 place of the secret story, where professional life narratives emerge, it is as if one 23 is aware of or anticipates dissention between a sacred story and secret story, one 24 can leave the cover story. 25 26 I would suggest that Keith shared a secret story and for ten years of his 27 professional life he told a cover story, that inclusion in community recreation 28 environments is a great place for all people to be. 29 30 So moral discomfort may arise when the secret stories we are told, the sacred stories 31 rather we are told, the secret stories we live and the cover stories we tell are 32 different. The professional knowledge landscape is comprised of dynamic interaction 33 of professional knowledge that includes codes of conduct, learned through theory and 34 formal educational contexts, so those normative rules about who we are, practical Premier Captioning & Realtime Ltd www.pcr.ie 119 1 knowledge, is that which is good and right or bad and wrong is learned through 2 practice in a space where it is private and we integrate our personal values and 3 virtues and our relational knowing. 4 5 So unpacking the sacred stories, the stories of secrecy and stories used to cover is 6 an essential part of the ethical work required for Adapted Physical Activity I'm 7 suggesting. Making the stories visible such as Keith and Jack, brings tensions and 8 synergies to light, holding the stories up against ethical theory to assist our moral 9 knowing and subsequent actions regarding goodness and badness of intent and 10 consequences of professional action, thereby diminishing practices that result in 11 what has been termed special education damage. 12 13 Ethical understanding of counter stories constructed from the lived experience of 14 persons who because of our action or inaction are disabled, may offer alternative 15 understandings and an appropriate ethical platform on which to engage in crucial 16 discussions, hearing counter stories is arguably fundamental to our understanding of 17 professional practice in Adapted Physical Activity, it is a place for the teller and 18 the listener to come together to begin to understand the dominant story, undoing it 19 and retelling it in a way that invites new interpretations and inclusions. 20 21 More counter stories need to be heard in Adapted Physical Activity. We have been 22 criticised for privileging the professional as the expert on issues of wellness and 23 health promotion and in doing so promoting expertism. It has been argued that the 24 process of professionalisation creates individuals who, on the basis of knowledge, 25 that they assume to be objective and share in the belief of, are acting in the best 26 interests of others. 27 28 The term professional disability parasite has been used to describe those who acquire 29 textbook qualifications and careers based on the perceptions of what is normative. 30 31 Shakespeare however does tell us that we need specialised expertise and that 32 intervention in the lives of people with impairments through those who devote their 33 professional careers to working in a disability field may have insights that are 34 important to the development of advocacy groups. Premier Captioning & Realtime Ltd www.pcr.ie 120 1 2 APA yet, I would suggest, has a lot of work to do, and a lot of work to undergo in 3 looking at the discipline -- ethical work of our discipline to deconstruct, to 4 criticise and to be reflective so that we understand the ideology of expertism. 5 6 The various perspectives of disability including medical model, biological model, 7 social model, minority model, if you are in North America, raise interesting 8 questions about who the expert is, what role the expert plays in determining what is 9 good and right and what is bad and wrong. 10 11 We are being watched as a discipline, we are being criticised from the outside. We 12 are being accused of colonising disability and justifying it so that we can keep our 13 existence. 14 15 So in conclusion then, we have come to know Jack's experience of dignity and 16 indignity -- understanding that which constitute a dignified learning context for 17 instructor, participant, onlookers may bring illumination, may be illuminated rather 18 through the examination of counter stories with the support, potentially of an 19 ethical lens. 20 21 Relational ethics puts value on interdependence that occurs through mutual respect, 22 relational engagement and environment that challenges our assumptions of what is good 23 and right and what is bad and wrong. 24 25 Pat Flanagan challenged us at the opening of the conference in a couple of areas, he 26 said what can I do to increase the quality of physical activity participation in my 27 country? And how can I engage people with impairments directly in programme research 28 and teaching? So perhaps this is my answer in a small way Pat. 29 30 I think we need to look for and listen to the counter stories, as we have much to 31 learn from them. I think we can ask is there a point at which practical problems 32 become an ethical concern in our settings, and what will we do about it? Have we 33 created a pedagogical space for making indignities within professional practice 34 visible and in that context how can the six degrees of dignity presented by Shannon Premier Captioning & Realtime Ltd www.pcr.ie 121 1 be used to bring social change, public perception, community of choice, legislation, 2 looking at the self, thinking through public policy, and looking at challenges to a 3 solution. Thank you for your very kind attention this afternoon. 4 5 MR O'FLYNN: Thank you very much Dr Goodwin, we did start a little late, we probably 6 have time for about two questions if anybody wants to get involved. Just put up your 7 hand and we'll get a mic to you. 8 9 MR FLANAGAN: Thank you for that most powerful of presentations, can I go right back 10 to the start of Jack's story and ask you one question, the body language and tone of 11 the stranger, would have been a very significant element of the intervention, and how 12 it would have impacted on Keith, was there any discussion in relation to how that 13 element of it impacted on Keith and Jack? 14 DR GOODWIN: As Keith described it, he said thank goodness the guy had a towel around 15 his waist, but he bolted from the bench and moved quickly and directly into Keith's 16 face, inches away from his face. So as well as the strength of the verbal assault 17 there was a threat of proximity, I would say that certainly shut Keith down, he felt 18 very intimidated and threatened and it was read clearly by Jack as well, I'm not sure 19 I have answered your question. 20 21 Q. Thank you very much, I was wondering how much emphasis you put in, let's say, 22 professional training on reflecting of ethical issues, also based on theory and how 23 much emphasis would you put on personal development, seeing really the people that 24 have power over us have that because we give it to them, so there is an issue in -- 25 that's perhaps a combination of these two things, but where do you see the reflection 26 on dignity and so on and issues of personal development of our students? 27 DR GOODWIN: That's a very good question Martin, and when I presented some of my 28 ideas in Paris that was one of the responses of the audience, how do we do this 29 better? I did think about it quite a bit and it was using ethical theory, I think as 30 a way of structuring our reflection, now certainly I'm not going to say this is the 31 right answer, this is the wrong answer, I think it's through the process of 32 reflecting on what we are doing in our professional practice, from multiple 33 perspectives that will make us stronger, more thoughtful instructors and 34 professionals. Premier Captioning & Realtime Ltd www.pcr.ie 122 1 2 When do we do this? I think we do it all the time and I think we do it through 3 story, so right from their first introduction in early Adapted Physical Activity 4 classes right through to the senior classes, I don't think we have to wait until we 5 feel they are mature, I don't think we have to suggest our students are fragile 6 because they come to us with many, many of these stories already as cover stories. 7 Good question. 8 9 MR O'FLYNN: Thank you very much Dr Goodwin, we are going to have to wrap it up 10 because of the time, we are very glad to have you here and Pat would like to make a 11 small presentation, thank you very much. Dr Donna Goodwin everyone. 12 13 End of Presentation 14 15 Mini symposium: European Inclusive Physical Education Training/APAVET. 16 17 MR FLANAGAN: We'll get going because time will run short, we are running a bit over 18 time after a very powerful and emotional presentation in the last one. 19 20 I suppose we're going back to EIPET and APAVET, Adapted Physical Activity Vocational 21 Education Training, and that was a smaller project than EIPET, the European Inclusion 22 in Physical Education Training project, APAVET is coming to a conclusion, I want to 23 quickly present where the two projects are and where they came from. 24 25 Carmen from Madrid is going to present an evaluation of EIPET and it's operation to 26 date, Ingi from Iceland will present a short presentation on how they have used EIPET 27 in Iceland and then hopefully Jurgi and Javier might also come in with comments. 28 29 The aim of the symposium is to describe where they are at the moment and what we are 30 trying to do in relation to building on that as a resource, also looking for 31 suggestions and comments in relation to how to improve the resource particularly if 32 you are using parts of it or have seen it or seen it used in relation to training and 33 inclusion training, particularly for PE teachers, but we are in APAVET we are looking 34 at all other professionals in the leisure recreation sports area, just to clarify -- Premier Captioning & Realtime Ltd www.pcr.ie 123 1 the presentation will hopefully clarify. 2 3 Now there are some handouts with a more detailed article on EIPET and on APAVET and 4 on our APA programme, we didn't expect this many people at this late time in the day, 5 thank you for your energy and I suppose endurance at this stage and we definitely 6 will value your attendance and views at the end. 7 8 So back around to EIPET and aims -- so the programme was a two year project and the 9 aim was it was to evaluate and look at and develop on the APA programme that we have 10 been running at IT Tralee for 7 or 8 years for undergraduate students and also for 11 health and leisure students and undergraduate PE students and it was a mixture of 12 practical tutorial and theory and it was that mix that got interest from the partners 13 who developed EIPET such as Martin Kudlacek and Sports Coach UK and also hopefully 14 attracted some of the partners for APAVET. 15 16 And it's the practical element where the students have to engage with people with 17 disabilities through the programme and in that, are then tutored each week leading 18 into that practical, working with a range of people with disabilities from visual 19 impairment, physical disability, children with Down Syndrome, children with autism. 20 21 The programme is to empower teacher training providers and teachers with the 22 knowledge, skills and competence to operate effectively, we have very large numbers 23 of international studies, including one in Ireland, Sarah Meehan the author of that 24 study is here in the audience, that indicated that PE teachers felt not that 25 competent, in actual fact many of them felt not very competent of their ability to 26 include children with disabilities in the PE class. A figure of 88% of people who 27 completed the survey indicated they had no previous experience of adapted physical 28 education or Adapted Physical Activity in their undergraduate programme. 29 30 That's a significant gap for PE teachers who will be expected to include children 31 with disabilities in their PE class, having no training or experience at all at 32 undergraduate level. So that indicated that when we looked internationally we 33 thought well other countries I'm sure are doing much better than we are on that score 34 and that wasn't the case either. There was little or no, we looked at the UK and Premier Captioning & Realtime Ltd www.pcr.ie 124 1 some of the other countries involved in the EIPET project and we found not much of a 2 difference in relation to Adapted Physical Activity. 3 4 And even when there was some adapted physical education or APA programme at 5 undergraduate level there was no practical, so maybe some sort simulations, maybe 6 some sort workshops, but no on-going programme where they worked with a child, adult 7 or group of children or adults over a period of 12 to 15 weeks developing programmes 8 and their experience and meeting some of the challenges and barriers they would meet 9 as PE teachers. 10 11 The aim at the end was to develop a resource pack to provide this training for PE 12 teachers and it would be available online, available in a CD and memory pack, 13 basically any university college could take the programme and use it. 14 15 This was the original partner group, Palacky University, Institute of Leisure and 16 Amenity Managers, Lithuanian Academy of Physical Education and Sports Coach UK, 17 Katherine Carthy was the person who designed and assisted us with the application, 18 one of the reasons it was successful was that it was a small tight group who could, 19 some of the other projects in Europe were very large projects and large numbers of 20 partners and we felt a smaller number of partners proved successful. 21 22 This is EIPET narrowed down to a very small space. As I said it's 48 hours, roughly 23 12 weeks, two hours theory one hour tutorial one practical, the tutorial is hugely 24 important, what we found over the years working with students is that they initially 25 were very nervous, uncomfortable and some even reluctant to engage with people with 26 disabilities, in actual fact in '98 when I ran the first programme that led to EIPET 27 the students met in the car park of a disability service and told me why are we doing 28 this? Could this not be an elective? We won't be working with people with 29 disabilities. And that was a shock to me at the time after our first visit, on our 30 first day, after about two years work, I said oh! I said how about, when you go out 31 and work in schools or leisure centres or sports governing bodies when people with 32 disabilities come in to you and say I want to get involved and I want to be active 33 and how can you help me, you can say I didn't take that elective, I can be of no help 34 to you, work away! And that's what I said to them and they said you're right okay, Premier Captioning & Realtime Ltd www.pcr.ie 125 1 and on they went. 2 3 I said it is compulsory, it will stay compulsory and we felt that students need these 4 kind of experiences and competencies before they graduate from PE or physical 5 activity courses. 6 7 The assessment reflects the programme, heavily emphasis on continuous assessment and 8 the practical elements, there are lesson plans, review of lesson plans, review of the 9 organisation and children and adults they work with are a significant part and in 10 EIPET it describes an exam, gives a practical format for how to assess practicals as 11 we saw it at the time, as a suitable model and as you can see it's 60%, 40 and 45% 12 for practicals so the students can do type of skills or demonstrate the type of 13 skills that are required. 14 15 APAVET we launched EIPET in November 2009 and again we thought that was the end of 16 EIPET because European funding ends, the project is over and it was a reaction in 17 Dublin from some of the people here and people from other countries that said this 18 could be a very significant project, people seemed to need this type of resource. 19 And I know we were overwhelmed really by the positivity and the interest level 20 towards the resource and the need for it, or elements of it, not necessarily the 21 whole 48-hours. 22 23 So EIPET led to, we wanted to do some reflection on EIPET and how it ran and get 24 other people working in Adapted Physical Activity and education to review it, use it, 25 talk about it, and improve it and maybe see where we could use that type of 26 knowledge, skills and competency framework in other areas of physical activity, 27 recreation, sports, sport science. 28 29 So it's main aim of APAVET is to review the EIPET resource itself and then to look at 30 how it might be used for leisure, recreation, special needs assistant, fitness 31 instructors or leisure centre managers or maybe in-service training and I know Liam 32 at the moment we are looking at a major in service programme using EIPET with special 33 education needs assistant in the Kerry area, that was requested by the local 34 education service, so with a resource, there is potential to expand and use it in a Premier Captioning & Realtime Ltd www.pcr.ie 126 1 different category. 2 3 These are our partners many of them here from Hascoli University Iceland, Spain, 4 Finland and ILAM Ireland again. 5 6 Okay the work we have done to date as I said is coming towards the end of the 7 project, we spent -- one of the aims was not necessarily a talk shop, but definitely 8 to spend time really discussing and looking at what was involved and why we did this, 9 why certain elements were in there, what would be taken out for sports coaches and 10 the group broke up into smaller groups, who worked on sports coaches, or special 11 needs assistants or leisure centre management staff, and the meetings -- we have a 12 focus here to complete the knowledge and skills, our aim is not to come up with a new 13 resource because EIPET had a budget of about 320,000 or 330,000 where we could get 14 time from our work to work on EIPET, APAVET is a much smaller project, each country 15 applied in their own country and the only funding we could get would be for travel 16 and attendance at meetings, no time off work, it was all done on a voluntary capacity 17 after that, to be fair the partners have done a huge amount of work in a voluntary 18 capacity in between meetings. 19 20 The other issue we were very keen on was how do we address quality assurance, for 21 example EIPET is online, available free and anybody can use it so our concern was 22 let's say someone is using two hours of EIPET 48 hours and they put up on the website 23 we apply they EIPET PE module to our students, they are not applying that, so some 24 sort of way of assessing quality of programme or who might use it and acknowledge 25 that it's the EIPET module for their PE students. 26 27 Another major focus was new projects, knowledge, skills and competencies for the 28 leisure centre sports coaches. And a big element of APAVET where you hear the type 29 of work Ingi has done in Iceland was to continue to promote the resource and indicate 30 it's there, it's useful, it's available free and it has some useful pedagogy and 31 knowledge elements that could be used in any PE degree throughout the world really 32 and it was to record those uses and to continue to promote and encourage its use 33 throughout any college that may like to use it. 34 Premier Captioning & Realtime Ltd www.pcr.ie 127 1 So that's very briefly -- the area we looked at was new project, need for short 2 in-service course, this came up at the launch of 2009, sports coaching bodies were 3 looking for a four hour course, now the work with APAVET has also informed the 4 national training framework, Liam McDonagh there, just gone out for a moment, has 5 used this resource to build on the national framework we have in Ireland, APA modules 6 for leisure and recreation, study on PE students we think we can do a lot more of 7 that, development maybe of another version, a better version of EIPET at this stage 8 as things go out of date, as we get better information and as we look back and say 9 this could be a lot better and get advice from people with expertise in specific 10 area. 11 12 Then like today to continue to promote EIPET at international events, conferences and 13 wherever we get an opportunity within and outside our countries. Then as I said to 14 link with national training framework in Ireland or national training frameworks in 15 other countries. 16 17 That's a very brief account of EIPET and APAVET to date. Thanks very much. 18 19 DR TEJERO: Thank you Pat, just in the context of APAVET project we would like to 20 share with you an example of this quality assurance that Pat has been explaining 21 before. It was an example of the evaluation of the EIPET programme itself at the 22 Spanish level, because we were at the beginning very motivated in the area to know 23 about EIPET project itself and we took it and we tried to - how do we think it will 24 work in another cultural context like Spain, in this case? 25 26 But first of all I would like to share with you the human part of the project, which 27 is a very nice group of people, great commitment with the idea of how to get better 28 tools, you see here a picture of the group in Finland and this is something that I 29 would like to point out that the group of people has been working very helpfully in 30 the meetings and even between the meetings, so just to tell you that for Carmen and 31 for me it is a pleasure to work with you all and we have been learning and improving 32 a lot. 33 34 So in the Spanish case we first in 2009 when EIPET programme was launched here in Premier Captioning & Realtime Ltd www.pcr.ie 128 1 Dublin we were contacted by Kathleen Carthy just to say EIPET has been presented, we 2 would like to go a little further with another brand new project which was APAVET so 3 we start to think what are the best thing in Spain, we are English classes in the 4 school, but still we are not that good English speakers, it would be nice to get 5 accessible some of the material at least and we started to translate the 6 presentations in our centre, in the Centre of Inclusive Sports Studies. 7 8 And after this we included with the CARA centre the translated material in the 9 website and then our faculty engaged the APAVET project as a pilot in early 2011, 10 last year. 11 12 Last year one of the aims of the group was to evaluate the appropriateness of EIPET 13 in such a context, so we tried to contact the APA experts in Spain and to present to 14 them the tool and to receive some feedback from them and the feedback, it will be 15 presented now by Carmen, she is a PhD student at our University in Madrid. 16 17 MS OCETE: 17 Spanish Adapted Physical Activity and sport experts were contacted by 18 phone and e-mail. Inclusion criteria were to teach APA at university level and 19 working at the moment with people with disability, universities, schools and other 20 context. 21 22 Finally, evaluation was provided by ten experts, four women and six men. 23 24 A survey with 14 questions using a Likert scale with five possibilities and an 25 optional open answer for every item. They had to give feedback for 24 lectures in 26 Powerpoint and translated to the Spanish language and EIPET resources website. 27 28 So here is the survey as an example, it's in the Spanish language, a short 29 introduction, Likert scale one to five, and this is the framework, aim, goal, model, 30 skill, knowledge, it's a real survey, okay? 31 32 Three settings were evaluated. The first was a framework, second is resources and 33 the third is actual uses. 34 Premier Captioning & Realtime Ltd www.pcr.ie 129 1 The experts evaluated in framework goal and aim, functional maps, skills, knowledge 2 and competence, structure of module, contents of programme and the model. 3 4 Resources were evaluated, presentation and content of lectures, practice, assessment, 5 structure of contents and website. 6 7 Finally, in actual use our equation, easy to use and apply the generated resources. 8 9 Well the general evaluation for every item is more than four points, but the experts 10 tells that structure of module, content of programme and content of lecture is the 11 best. 12 13 This section is for us very important because suggestions for adaptation to the 14 Spanish context is suggested a common structure for all contents, and inclusion of 15 contents, attitudes content, clinical and rehabilitation settings, audio visual 16 resources, professional forum and space where the professionals exchange ideas and 17 experience, web updated links relating to contents and Spanish experts references and 18 Spanish legislation. 19 20 Some conclusions, the first is EIPET is wonderful! It's easy to access and use, it's 21 cheap, but need to be adapted to Spanish context. 22 23 And the second conclusion is that it is a necessary resource for training teachers. 24 25 Thank you for your attention. 26 27 INGI: Hi, I come from Iceland and compare to my colleagues from Spain we are a small 28 boat while they are a tanker, if we need to change course we can do it fairly 29 quickly. So when we were introduce to EIPET we realised immediately this was 30 something we had been waiting for. 31 32 In our PE programme we don't have any special APA programme, PE students, PE teachers 33 are meant to do with the whole lot and we have a lot of inclusion, basically we don't 34 have any special schools, it's all inclusive. Premier Captioning & Realtime Ltd www.pcr.ie 130 1 2 So we just jumped on board and used it. So it's a small faculty, we are about 35 to 3 40 students every year in PE, so every second year on odd numbers we give EIPET to 4 the PE students and we use six of those ETCS credits from EIPET, we had to modify it 5 a little bit, we just let them read it in English, we have to modify the practical 6 sessions because we don't always find this number of disabled people around, but we 7 manage, and they are extremely good guidance for us to use. And we added four more 8 credits for performance sport. 9 10 Then on every even year we give a little smaller project to the occupational 11 therapists who are also under our school of education, and about three of them from 12 EIPET and two we bring in public health sector for them, but it really jumped into 13 our lap and we just used it. 14 15 But you realise quickly as Pat said, that putting everybody -- university is find, 48 16 hours, 12 weeks, but there are a lot more people in Iceland that need to know about 17 APA, so we made a short EIPET sport package and basically from Javier from Spain, so 18 we set up a common module which all sports take together, basically five lectures, 19 three lessons for discussion and two practical. It goes across all sports. 20 21 Then we divide them up into sport specific, and since I am a swimming oriented guy I 22 am ready with EIPET for sport in swimming and I can give it, Javier is ready for the 23 wheelchair so that's ready as well. I have in Iceland an expert in track and field 24 so he can do track and field and then in the end we have four hours of in-service, 25 like where everybody has to join the experts in Iceland at their local, venue where 26 they are coaching or training and working with them. 27 28 How we do it out of the university is that twice in the autumn and twice in the 29 spring the school have working day or in-service training and traditionally this is 30 focused on the Icelandic teacher or math teacher or whatever, and a lot of time the 31 PE teacher have been complaining why do we have to come in for this once again? We 32 just jumped on this boat and said look we have material for you, when you are going 33 to have your in-service training or working day next, we'll come, we'll give you this 34 EIPET material and we do, it's popular. Premier Captioning & Realtime Ltd www.pcr.ie 131 1 2 Keep in mind we are not so many, we are only 300,000, a lot of the communities around 3 Iceland have 900 to 1,000 people so, but we realised right from the beginning that we 4 would not be going to get audience of 45 people like here. So we realised this, we 5 are going to spread the seeds all around. 6 7 It's also going to be a topic for the teachers, the PE teachers union who have a 8 training course weekend in the beginning of every year. This year it's going to be 9 EIPET will be taught for two days, for everybody who shows up, it's about 100 or 200 10 PE teachers come in. 11 12 So we have done it 7 times now, twice in Reykjavik, first time 25 showed up and 35 13 the second time, which is quite big for us. 14 15 The first time we did it in Reykjavik mainly the coaches who work especially for 16 disability came, the second time around those coaches were just coaching football or 17 basketball out in the clubs, but certainly finding with one autistic child maybe, 18 they came. 19 20 We have done it in five places outside of Reykjavik with 10, 17, 8 and 9 but we are 21 happy with that, because those 8 that came, they mean something, they are happy. The 22 red dots on the picture are communities that have special sport clubs for disability. 23 We have two more red dots now which after the EIPET meeting they said all right we'll 24 start up a club tomorrow, and they did, so it really worked well for us. Was that 25 fast enough? Thank you. 26 27 MR FLANAGAN: Thank you very much, that will just give you an idea of some of the 28 elements, I'm just conscious of time if we go to questions -- if anyone has the 29 framework from the desk, from the CARA IT Tralee or if you have had a look at it or 30 been using it, I know some people have been using it with their undergraduate PE 31 students or sports science students so any feedback in relation to variations of the 32 programme that you used or the actual programme the team would very much value at 33 this stage and any comments on it at the moment. We're due to finish at six so if we 34 took maybe 10 or 15 minutes or answered any questions that you might have we'll be Premier Captioning & Realtime Ltd www.pcr.ie 132 1 glad to do that as well. 2 3 MR McDONAGH: Okay folks just so you know what Amie is handing around to threw is 4 three framework documents, what they are is competency skills and knowledge that we 5 think in three different areas a sports coach would require after doing an EIPET 6 module, a special needs assistant would have an doing an EIPET module and leisure 7 centre instructor. 8 9 There is a small evaluation sheet, we want to get your feedback on these, I'm also 10 going to put up the original framework competency model as well, but we want to see 11 off you guys if you feel this is aspirational, if you think it might be too much to 12 ask of a special needs assistant to have this skill and these competencies at the end 13 of the course, if you feel that somebody working in a leisure centre doesn't need to 14 have that much knowledge or skill in certain areas note that as well, then afterwards 15 we'd love to get your feedback. 16 17 We also have a little comment card on the bottom, anybody interested in taking on 18 EIPET or any elements put your name on down there and we'll contact you. Thanks very 19 much. 20 21 Q. First of all just to say that I think the EIPET programme is a wonderful resource for 22 lecturers to have, but what I really struggled with is the content that was in it and 23 the time that you recommend for the delivery of the programme. 24 25 I speak for my own university, we have three hours a week for 12 weeks dedicated to 26 inclusive PE that's it, we don't have another day or hour outside that and we have an 27 extremely packed curriculum, I am wondering about the research done on the evaluation 28 to date, have you gotten a sense of areas that people have left out or areas people 29 have prioritised because of time constraints that people have in relation to hours we 30 have to deliver the module and if so can you give some guidance on -- I'm not saying 31 certain areas are more important than others, but just to get a feeling, 32 realistically it's not an option that what you have can be delivered for me anyway, 33 maybe other people can. 34 Premier Captioning & Realtime Ltd www.pcr.ie 133 1 MR FLANAGAN: It's just a little bit hard to hear from the microphone, the feedback 2 generally is -- that has come back, the project 48 hours is a lot of contact time in 3 busy PE schedules, and I think we've no clear data on it, but they would say they 4 take theory elements similar to Ingi's point, the practical side take as huge amount 5 of time, effort and coordination alone, then so what some groups, I think that's what 6 you do, the theory and some practical, but there isn't a tutorial element, so 7 basically some groups are doing some theory with a practical, some groups are doing 8 only theory, and they cut the hours down to maybe 24 hours or so in the theory side 9 or 12 hours in theory side. 10 11 The problem I suppose, ideally some people will criticise it that there is too much, 12 it doesn't deal enough with some areas, for example only one lecture or cerebral 13 palsy, only two lectures on behaviour management I know Martin Kudlacek had a major 14 input into that element of the programme, so the way we look at the programme is that 15 it tries to probably do too much and fit in a lot and some people criticised that 16 there is not enough information on some conditions and some elements of Adapted 17 Physical Activity, so overall that's a common comment that four hours a week for 12 18 weeks is a lot of time and a great demand. 19 20 And it actually came up Sarah, before we actually did EIPET, a number of colleges 21 indicated that they would find it difficult to have four hours per week. Then when 22 we asked how many hours were they doing for other elements of the PE programme we 23 felt anything less than four hours wouldn't do justice to a full programme of adapted 24 physical education, the other issue I know Martin Kudlacek raised this point through 25 EIPET, I'm sure he'll raise it again at some stage, is that are they expert enough 26 having done EIPET to be able to engage with some children with disabilities, 27 particularly with more severe or challenging physical or intellectual disabilities in 28 a mainstream class? 29 30 And he would make the point, and emphasise that, that they are not specialists at all 31 in adapted physical education having done EIPET, these are just the straightforward 32 undergraduate PE students who need some knowledge in relation to inclusion in 33 physical education as they develop professionally as teachers. 34 Premier Captioning & Realtime Ltd www.pcr.ie 134 1 So Martin would make the point that to be really good and capable of inclusion that 2 you probably need to be studying adapted physical education undergraduate degree in 3 APA or a masters degree, just to clarify that, or a masters degree in adapted 4 physical education -- would that sum up your views on it Martin? 5 6 DR KUDLACEK: Or appropriate amount of hours, regardless of label, but the 7 competency. I would not care that much about the label, depending on legislation in 8 the country but the competency is the key and personal experience in the setting, 9 even in reflection with what Donna was saying, it was shown in some research in the 10 US that even their specialists were not trained enough they didn't have experience in 11 realistic settings, we must not underestimate that. Basic is important, but we need 12 to have much more hours and much more experience and competencies, somebody who will 13 be responsible for that, to work as a consultant and what kind of label or jersey he 14 or she will wear depends on the country and conditions. 15 16 Q. I liked your answer Pat in telling the students that it's compulsory and going to 17 stay compulsory, I can't comment on APA, but I do know a little about the general 18 education and inclusion issue in general education and what all the research is 19 telling us is there are three consistent issues identified by teachers, lack of 20 knowledge, lack of familiarity or experience and lack of support, and I think those 21 issues are probably the same for APA. 22 23 There is less research done on how we can deal with these, but the one consistent 24 outcome which has benefits for the learner is experience, that's the one that we 25 agree on, so that whether you get that experience in your undergraduate work, through 26 on-going professional input or actually on the job, that has been the one that is 27 isolated as having the greatest input into consistently better outcomes for the 28 learner, so I don't know, maybe there is a lesson in there from general education for 29 APA. But I liked your answer of it's compulsory and it's going to stay compulsory. 30 31 MR McDONAGH: Folks just to point out on the USB sticks that you got with the 32 abstracts is the file with the entire EIPET resource on there and more information on 33 APAVET and also information on CARA training and education, have a look at EIPET 34 there and it will give you the entire information in case you are wondering where to Premier Captioning & Realtime Ltd www.pcr.ie 135 1 go to next. 2 3 MR FLANAGAN: I did mention EIPET is free, the online version is a small cost because 4 it's run through a server in the Netherlands, not for tax purposes or anything like 5 that, it's a totally non-profit, non money-making programme, just something like 3 6 euro a year per student, Catherine is that the figure? It's a small amount just to 7 access the website and the programme online, a very small amount per student. 8 9 Q. Just a short question just for information, the SNAs module and it's for inclusive 10 setting, is there -- would there be any difference between an SNAs model in inclusive 11 setting to an SNAs in special education, I know we are not a fully inclusive special 12 education system and somebody said a statistic that 80% of the kids are now in 13 mainstream, but there are a significant number of SNAs working in special schools who 14 just on title wouldn't be included in that, yet are doing physical activity, physical 15 education every day of the week, and while special schools may be, there is talk of 16 them being on the way it, it's not going to happen for a long time so that's the 17 question. 18 19 SPEAKER: Thank you for your remark so EIPET it aims for inclusive settings, for 20 other settings there are surely a lot of material, education material and courses 21 available. Was this an answer? 22 23 Q. Having just looked at the content it looks to me, it looks perfectly appropriate for 24 an SNAs in a special school and from what I know, other than individual schools or 25 pockets of schools arranging something for those SNAs there actually isn't an 26 equivalent to that available, there may be in other countries, but not here that I am 27 aware of. 28 MR FLANAGAN: The inclusive; was it consistent with the whole concept of EIPET and 29 the coaching structure and leisure centre management, so it probably would have been 30 left in there for that, but we wouldn't be inclusive, we wouldn't say it couldn't be 31 used for and we would take your advice on that because your experience is with 32 service provision, Liam's project I'm sure he will come in on this, with SNAs in 33 Kerry is with SNAs both in special centres and mainstream schools, he might want to 34 comment. Premier Captioning & Realtime Ltd www.pcr.ie 136 1 MR McDONAGH: The project we are looking at in Kerry with SNAs will be three six-hour 2 days intensive as part of the continuous professional development, they will then 3 receive a further two seminars over the course of the academic year so from September 4 2012 through to May 2013, so a further three seminars. They will do 20 hours of 5 their own learning, which they would be doing in their own time, they will hand in a 6 logbook with 50 hours of logged PE practice where they had to work with the PE 7 teacher to write up a session plan for their child in their group and one last final 8 piece of work, is their assignment on that. 9 10 For that they are working right from September of this year through to May of next, 11 on completion of all to what we deem an appropriate standard they will receive a 12 single subject accreditation from IT Tralee to an honours degree level, so it's level 13 8, so it's quite a decent reward and they will have a full EIPET course done at that 14 stage, adapted version, but still up to level 8 award. 15 16 Q. Just to clarify for the European partners that's EQF level 6, the Irish qualification 17 is level 8, so we are not giving anyone a PhD over one year! 18 19 Q. This follows on from the point you have just said, I am just wondering have you 20 considered that Special Needs Assistants are not PE specialists and do you think it 21 will be -- you will have a problem with trying to deliver the EIPET programme that is 22 subject specific, including kids with special needs into a mainstream PE class, do 23 you think there will be difficulties with that given the lack of specialisation and 24 experience and educational training in the area of physical education? 25 MR McDONAGH: I suppose they will still fulfill the role that they will be assisting 26 the PE teacher to deliver, they won't take the lead on the PE class, it's just given 27 in the knowledge that what they are going to do -- we had a meeting with the PE 28 teachers, they are going to give the SNAs the lesson plan before the programme and 29 the SNAs will then tailor their lesson plan for their specific child to mirror what 30 they are doing but will have to put in the adaptation measures that they are going to 31 bring into the session. 32 33 So there is probably going to be a few issues with clashing of heads between PE 34 teachers and SNAs but that happens right across the board in maths, geography Premier Captioning & Realtime Ltd www.pcr.ie 137 1 everywhere else, they are there to assist, not take the lead. The hope is once the 2 PE teachers see the level of training that SNAs get from EIPET resource that they 3 will buy in and try and get it for themselves as well. 4 5 Q. Will they be involved in the assessment, to analyse and assess students and 6 individual elements? I think this is fantastic by the way and really badly needed 7 but the SNAs are a huge resource, it's a brilliant idea. 8 MR McDONAGH: That's what we are trying to get at today Sarah, if you feel that 9 that's something that's aspirational for a Special Needs Assistant that's the 10 feedback we want to get back. That might be a bit much to ask of an SNAs or leisure 11 centre, it might be a bit much to ask to do functional testing on specific 12 disabilities so we need to get that info back. 13 MR FLANAGAN: Just to come in on that, the feedback that we had from speaking to SNAs 14 and PE teachers in Ireland at least, I'm not sure what it's like in other countries 15 was in many cases the SNAs left the classroom during physical education that they 16 didn't see they had any role, in actual fact it would be the total opposite that the 17 special needs assistant could be probably more help in the PE class than any other 18 subject on the curriculum and would facilitate individual work or assisted work with 19 small groups maybe in conjunction with a peer tutor to work also, so we just felt 20 that it says analyse, it would be important if the SNAs is to have an involvement 21 with the child and their participation in PE, they need to be involved in the 22 planning and analysis and review of that programme with the teacher, so it wasn't 23 necessarily that they would do it, but that definitely they would work, when the 24 teacher would be doing it the teacher would discuss the review and analysis of the PE 25 class and outcomes with the SNAs. 26 27 As you said the main aim of it would be that the teacher now has a very good resource 28 of a person who really understands the child and their needs on a daily basis so we 29 thought it would be a great way of improving quality of PE for a child. As Liam said 30 some elements may be too ambitious but we welcome your feedback on any of the 31 competencies and skills and also going right back to EIPET resource and competencies 32 and skills itself. 33 34 Thanks very much for that. Premier Captioning & Realtime Ltd www.pcr.ie 138 1 2 MR McDONAGH: I'll set up a box outside at the, where you signed in or where you 3 collected your name badges an APAVET box if you want to put the evaluations in there, 4 I know it's a lot to ask now, take your time and this evening if you get a chance 5 drop a few notes we'd love to get your feedback and advice on what you guys think. 6 7 MR FLANAGAN: Can I finish thanking you for staying on so late and can I again 8 similar to Javier can I thank and acknowledge the hard work of the partners in APAVET 9 and we have one to two meetings left, so if you have views and comments we'll meet in 10 Budapest in June and there is a possibility of a further meeting in Finland in July, 11 and then we have to do our final report, so it may lead to a further application for 12 funding for projects like EIPET, so if you are interested or have views on it or use 13 this type of resource, or have resources that are totally different or very similar, 14 we would be very interested in hearing from you, and not necessarily joining this 15 project but maybe future projects that involved the partners here so thanks very much 16 and enjoy tonight and thank you very much. 17 18 End of Event 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 Premier Captioning & Realtime Ltd www.pcr.ie