This reminds of one the centre-pieces of Inclusion Europe work: Making sure every possible self-advocate can tell their story face to face with those who need to hear it.
The 17th IASSIDD World Congress took place in Chicago, USA, August 5-8, 2024. IASSIDD (the International Association for the Scientific Study of Intellectual and Developmental Disabilities) Congresses are organised every third year, now five years had passed since the previous one in Glasgow 2019.
This was my third IASSIDD World Congress and I was extremely glad to find out one very good and positive development. This World Congress introduced self-advocates as co-researchers, highlighting their expertise, and their lived experience. The expert role of families, parents and siblings was also recognised more clearly than before.
One of my goals in attending these congresses has been to promote the co-operation between advocacy and research, to bring the voice and view of families into these discussions. Now I see it happening, and I think it is a very good progress.
I am not saying that I had anything to do with it. I just think that the time has been right for the research world to understand this.
Amongst the 1,000 participants, there were a lot of self-advocates and family members, and numerous presentations were about inclusive research with self-advocates as co-researchers.
Part of the Congress program and an instructions booklet were published also in easy-to-read English.
Despite the good intentions the Congress was not inclusive. Majority of the speakers, especially in parallel sessions, talked far too fast, making it very difficult to follow, and near impossible for support persons to do their work well. Means of improving event accessibility such as the red, yellow and green cards were not in use.
There were many interesting topics at the Congress. Having several parallel sessions running at the same time makes it difficult to choose from. You inevitably have to prioritise, and will miss many important topics and sessions.
All ten keynotes were truly good and well presented. There was, however, one that struck me, maybe because it was about something we all struggle with constantly; “How to overcome intellectual disability stigma”, by Professor Katrina Scior from the UK. Professor Scior has been working with self-advocates for a long time. One of them is former board member of Inclusion Europe, Harry Roche.
Katrina Scior’s keynote included an approach which I gladly share: “It is time to desist from using established models and campaigning efforts to reduce disability stigma and instead position people with intellectual disabilities not only at the centre but as the driving force in efforts to overcome stigma.”