I have promised Sarah Lewthwaite via Twitter that I would report on the NNDR 2011 Conference held in Reyjavik, May 27th-28th; so here goes....
I was only able to attend the 2nd day due to prior commitments in the UK, but here are the highlights of the day for me:
The keynote speaker, Professor Steven J Taylor, gave an interesting talk entitled " The repeated cycle of exposes and reforms on instiutions in the US". In his talk Steven looked back at the history of mental instiutions/asylums in the US since the early 1900's and attempts to bring about change by exposing systematic violence and mal treatment (watchers of May 31st Panoroma program on abuse in Bristol care home for people with learning disabilities, will be very familiar with this topic!). Despite various exposes lead by indiviudal philanthropists and collective activist groups such as World War 2 conscientious objectors wo were sent to work as attendants in the institutions; nothing really changed in the institutions. Exposes would garner newspaper headlines for a few days and then the status quo would return. Steven argued that change only happened in the US when disabled activists and self-advocates lead the campaign for change. This point, although well made, was not evidenced or expanded upon and it would have been nice to see as many photos, extracts and pictures of self-advocates as there were of conscientious objectors and the instiutions in which they served. Nevertheless it was a powerful message that the conference audience really engaged with.
Patsie Frawley, Janice Slattery (self-advocate) and Annie O'Shea from Australia spoke about a peer education model they have developed where people with learning disabilities are trained to work with their peers to support them in thinking about relationships and sexuality. They used stories to talk about staying safe and being treated right. With my interest in positive risk taking and presumed capacity I was fascinated to hear that many of the professionals surveyed about the value of the peer educator model thought that it would not work because people with learning disabilities would find the concepts too difficult.
With a focus on India, Srikala Naraian spoke about " Schools, friendship and families: locating indiviudal capacity in social contexts". Srikala looked at disabled children's self-reports of the friendships they made at school. What many counted as friendship, could be perceived as "help". This is not to deny that genuine friendships cannot be developed from a helping (perhaps sympathy-based) relationship. One conclusion was that attending mainstream school was not enough to guarantee that disabled children were not socially isolated. Furthermore, assuming the competency of disabled children can be at odds with cultural norms of parental responsibility where parents feel it is their duty and obligation to provide for their children rather than supporting different forms of independence.
Rohhss Chapman and Liz Tilley reported on their two different research projects in which they had studied how different self-advocacy groups worked. They discussed the extent to which self-advocates had genuine and meaningful power and control over the activities and directions of their organisations. Through this discussion they highlighted real tensions and paradoxes:
i) Self advocacy groups that relied on funding often found their agenda was dictated by the funders; which was not necessarily the same as the members' agenda;
ii) Non-disabled trustees and directors tended to bypass disabled members when it came to complex matters such as finances and budgets. But, even in these organisations where this happened, there were examples of "good" advocacy support;
iii) Disabled Trustees were not always adequately prepared for the role of being legally responsible for the organisation;
iv) Advocates supporting people with learning disabilities varied in the extent to which they facilitated or dominated the agenda of the group/organisation.
In a session on Inclusive Research, Annie O'Shea spoke about how she used Photovoice as a method that facilitated "honest accounts" of the lives of people with learning disabilities in a way that was accessible to them. Annie reflected on how participants were asking at the end of her PhD prohect about what was going to happen; would their life change as a result of being in the project? Annie had not promised this, but it is not unusual for participants in inclusive research to hope that their own personal circumstances will change. Katherine Runswick-Cole gave a fascinating talk which was less about the method of using photographs with disabled children and more about the influence of analytical frameworks in how these stories might be interpreted. She used an example of Rosie, a young girl with Autism,who took photographs of herself at home with important objects and people. She then demonstrated how different analytical frameworks (Autism canon; social model of disability; Nordic person-environment model; social-constructivist model) presented Rosie and her parents in both positive and negative lights. Katherine argued that the purpose of expsing these different "readings" was to disrupt dominant views and discourses. At the end of this session my colleague Melanie Nind posed an interesting question " Are we asking too much of inclusive research"? It has to be ethical, it has to have local, national and global impact AND it has to keep all stakeholders happy.
A thought provoking conference, I know I missed some great sessions, but hopefully this has given a flavour of both the potential and realities of life for disabled people today.