On 14 November 2012 I attended the Open University Disability Conference held at a conference centre close to the university. The last time I attended this event was back in 2010. I wrote a summary of the 2010 conference which might be useful to some (I should add that I’ve had to mess around a bit to get a link to this earlier summary and there is a possibility that this link might go to different posts since I can’t quite figure out how to get a permalink, but that’s a side issue…)
The conference was a two day event but due to other things I had to be getting on with I could only attend one of the days. From my experience of the first conference, the second day tends to be quite dramatic (and this year proved to be no exception).
The legacy of the Paralympics
Julie Young from Disabled Student Services kicked off the day by introducing Tony O’Shea-Poon, head of equality and diversity. Tony gave a presentation entitled ‘A lot can change in 64 years’ which described the history of the Paralympic games whilst at the same time putting the games into the context of disability equality.
During the Paralympics I remember a television drama that presented the origins of the games. Tony reminded us that it began in 1948 at the Stoke Mandeville Hospital. The first ever Paralympic games (with the ‘para’ meaning ‘alongside’) taking place in Rome in 1960.
One of the striking aspects of Tony’s presentation is that it was presented in terms of ‘forces’; forces which have increased the awareness of issues that impact upon the lives of people with disabilities. Relating back to the origins of the games, one force is the allies of people with disabilities. There is also the role that role models can play, particularly in popular media.
Two other forces include disabled peoples involvement and the disability rights movement. Tony spoke about something that I had not known of before. During the late 1980s I remember a number of public ‘telethon’ events – extended TV shows that aimed to raise money for charitable causes. In 1992 there was a campaign to ‘block telethon’. This is a message that people with disabilities should have rights, not charity. This connects with a movement away from a more historic medical and charity model of disability to a social model where people with disabilities should have an equal rights and opportunities within society. Tony also mentioned the importance of legislation, particularly the disability rights commission, explicitly mentioning role of Sir Bert Massie.
Tony brought us to the present day, emphasising not only recent successes (such as the Paralympic games), but also current challenges; Tony drew our attention to protests in August of this year by disabled people against government cuts. Legitimate protest is considered to be another force that can facilitate change.
Deb Criddle: Paralympian
Jane Swindells from the university disability advisory service introduced Deb Criddle (Wikipedia), paralympian gold and silver medallist. Deb gained one gold medal and two silver medals in London 2012, as well as gaining gold medals in Athens.
This part of the day took the form of a question and answer session, with Jane asking the first questions. Deb reflected on the recent Paralympic games and described her personal experiences. One of the key points that Deb made was that it was great that the games focussed people’s attention on abilities and not disabilities. It also had the effect of the making disability more normalised.
One thing that I remember from living in London at the time of the Olympics and Paralympics is that people were more open to talking to each other. Deb gave us an anecdote that the games created opportunities for conversations (about and with people with disabilities) which wouldn’t have otherwise happened.
Deb said that she ‘wasn’t expecting the support we had’. On the subject of support she also made an important point that the facilities and support services that are available within the UK are very different to the facilities that are available in other countries. At the time of the Paralympics I remember reading stories in the London Metro (the free newspaper that is available ever week day morning) about campaigners who were trying to obtain equipment and resources for some of the competitors.
Deb also shared with us aspects of her personal story. She said that through accident and circumstance led to opportunities, journeys, growth and amazing experiences. What was once a passing interest (in equestrianism) became a central interest. Deb also spoke about the challenge of confronting a disability. One of Deb’s phrases strongly resonated with me (as someone who has an unseen disability), which was, ‘I hadn’t learnt to laugh at myself’.
Deb is also an OU student. She studied at the same time as training. Deb said, ‘study gives you something else to focus on… trying too hard prevents you to achieving what you need to [achieve], it is a distraction in a sense’. She also emphasised the point that study is can often be hard work.
I’ve made a note of a final phrase of Deb’s (which probably isn’t word for word) which is certainly worth repeating; its message is very clear: ‘please don’t be overwhelmed by people with disability; people coming together [in partnership] can achieve’, and also, ‘take time to engage with people, you can learn from their stories, everyone is different’.
Throughout the conference there were a couple of workshops, a number of which were happening in parallel. I was only able to attend one of them. The one I chose was entitled ‘Asperger’s syndrome: supporting students through timely interventions’, facilitated by Martina Carroll. The emphasis on this workshop was about providing information to delegates and I’ve done my best to summarise the key points that I picked up.
The first point was that people who may have been diagnosed with Asperger’s syndrome can be very different; you can’t (and shouldn’t) generalise about the abilities of someone who may have a diagnosis.
The workshop touched upon the history of the syndrome. Martina mentioned Leo Kanner (Wikipedia) who translated some work by Hans Asperger. Asperger’s is understood as a developmental disorder that has a genetic basis (i.e. highly heritable). Martina mentioned a triad of impairments: communication difficulties (both expressive and receptive), potential difficulties with social interaction, and restricted and repetitive behaviours. A diagnosis will be considered to have two out of the three potential impairments.
Martina also touched upon that some people can have exceptional skills, such as skills in memory and mathematics, but again, it is important to remember that everyone is different. Due to the nature of the triad of impairments, co-existing conditions need to be considered, such as such as stress, anxiety and depression.
A final question is what accommodations can be made for people who have autism? TEACCH (Wikipedia) was mentioned, which is an educational model for schools which has the potential to offer some useful guidance. One key point is that providing learning materials that have a clearly defined structure (such as the module calendar) can certainly help everyone.
Towards the end of the session, there was some time for group discussions. The group that I was (randomly) assigned to discussed the challenges of group work, how important it was to try to facilitate constant communication between different people (which include mentors and advocates) and challenges surrounding examinations and assessment.
There are a number of resources that were mentioned that may be useful. I didn’t know this, but the Open University runs a module entitledUnderstanding the autism spectrum (OU website). The module is centred around a book by Ilona Roth called Autism in the 21st Century (publishers website). Another resource is Francesca Happe’s Lecture at the Royal Society, entitled When will we understand Autistic Spectrum Disorders? (Royal Society website) I really recommend this lecture – it is very easy to follow and connects very strongly with the themes of the workshop. There is also theNational Autistic Society website, which might also be useful.
The final part of the day was very different. We were introduced to three stand-up comics. These comics were not disabled comics, they were comics who just happened to incidentally have a disability. Comedy has the ability to challenge; it allows others to see and understand instances of people’s lives in a warm and undeniably human way. The ‘something’ that we all have in common with each other is an ability to laugh. When you laugh at a situation that is tough and challenging and begin to appreciate the absurdity and richness of life. Tough situations don’t seem as difficult anymore; laughter gives you a power to rise above a situation. In a way, the conference reflects this since it was all about sharing experience with a view to empowering and helping people.
The comics were Steve Day, Liam O’Caroll and Lawrence Clark. All were fabulous, but I especially enjoyed Lawrence’s set which I understand was a show that he took to the Edinburgh Festival. His set had a theme based on the word ‘inspiring’; he successfully sent himself up, along with others who may be inclined to use that word.
Julie Young closed the conference by emphasising some of the themes that were explored through the conference. Julie emphasised the importance of working together to deliver a service for our students and how this is connected with equality and rights. A key point is that the abilities our students are what really matters. Julie went on to emphasise the continued need to listen attentively to those who we serve.
With conferences that have multiple parallel sessions you can sometimes feel that you’re missing out on something, which is always a shame. During the lunch break, I heard how other delegates had appreciated hearing from students talking about their experiences of studying at the Open University. Personal stories allow people to directly connect with the challenges and difficulties that people face, and whilst on one hand there may be successes, there are other situations in which we don’t do the best that we can or support for people doesn’t arrive on time. Conferences such as these emphasise the importance of keeping our attention on students with disability whilst at the same time emphasising that different departments of the university need to talk to each other to ensure that we can offer the best possible support. Talking also permits us to learn more about what we can do to change things, so meetings such as these are invaluable.
I also have a recollection from the previous conference I attended. I remember talking to someone (I’m not sure who this was) who seemed to express surprise that I was from a ‘faculty’ (i.e. an academic) as opposed to a part of the university that was directly involved in support of students (I tend to conflate the two roles together). I was surprised that my presence caused surprise. Although this year I felt that there were more faculty representatives coming along than perhaps there were before, I do (personally) feel that there should be a broader spectrum of delegates attending.
All in all, I felt that I benefitted from the day. I met people who I had never met before and the objectives of facilitating communication, sharing practice and re-energising delegates had clearly been met.