The 3rd International Disabilities Studies Conference
Last week I visited the third International Disabilities Studies Conference in Amsterdam. I was very curious to see what the academic approach to accessibility would be. Is it completely different from the practical world of accessible web design where I come from? Where’s their focus? And of course, what ideas can I use for my own research.
The theme was The Art of Belonging, a double theme. On the one hand many of the talks were about what it means to belong. The conference talks about the right to belong: it’s important to create places where everybody, including people with disabilities, can flourish and participate. There were some wonderful examples of academic studies with far reaching participation between all kinds of people with all kinds of disabilities. Very interesting to see and relevant to my field. The second part of the theme of the conference was the arts. There was a lot of room for different art forms, like music, paintings, and for instance talks about disability in the context of museums. As Tineke Abma said in her introduction:
The arts are good at making the complex clear.
There was quite some room for talks about including people with disabilities in academic research. There were a few speakers who emphasised the different benefits of including people with intellectual disabilities (ID) into their projects. And not just including them in surveys, but truly embedding them into the team, often as paid members. Tessa Frankena explained the different roles that different people with different abilities took up in their research teams. Very interesting to the see the challenges mapped, but at the same time see a clear overview of the benefits of actively working together with people with disabilities. It would be very interesting to see what would happen if a design agency, or a design school hired someone with ID or another disability as a full time member of their design team. Would the designs become more inclusive? I should ask the few agencies I know who hire someone with a disability about their findings.
There were three talks about disabilities in the context of a museum. The talk by Nadia van Vuuren was very relevant to my research:
With the UN treaty for the rights of disabled people being ratified in The Netherlands in 2016, more and more museums are making themselves accessible. But access is not inclusion.
Nadia explained that making it possible for people in a wheelchair to visit a conference doesn’t automatically mean that they have a comparable experience. For instance, the narrative of an exhibition may start at the end of the stairs. Often the elevator opens somewhere else on that floor. This means that someone who needs that elevator will enter somewhere in the middle of the narrative and right away be lost.
This reminds me very much of the way we work on the web where we try to make a visual website accessible for alternative ways of interaction. We do this with the best intentions, but usually after the fact. It’s not an obvious part of the definition of done. If done well, in museums and on the web, inclusion is a much more fundamental part of the whole, which may even start at the architecture. Very interesting research, and I’m curious about Nadia’s further findings.
Technology and ethics
There was just one session about the role of technology in the lives of people with disabilities. Which I found surprising. Assistive technologies are a given in digital design, and people would not be able to use the web without them. I supposed there would be quite some research into this field, but at least in this conference there was as good as no interest in tech. A handful of people attended this session about technology.
Maybe the reason why there was so little interest in technology is answered in the question that Robert Maier, one of the presenters in this session asked: does assistive technology take us back to the medical definition of disability, away from the preferred social definition. Simply said, the medical definition sees disability as a disease, as a deviation from the norm, as something that should be cured. The social definition puts disability in a much broader perspective and says that disability is in part caused by a non-inclusive society. This was a bit of a strange session. Robert Maier wanted to discuss this issue, while the audience wanted to hear about new assistive technology.
The only in depth presentation about such tech was given by Femke Nijboer of Leiden University. She showed us the incredible work she’s doing with people with locked in syndrome. This can occur to people after a certain kind of stroke, which leaves them in a state in which they often can only move their eyes. She’s using brainwave scanners as a tool to let people control a computer. Before these brainwave scanners they used eye movement trackers to indicate commands like yes, no, and activate. But not many more than three commands are possible with such limited body movement. These brain wave scanners give people the ability to command many more, much more complex actions. Of course this greatly enhances their life.
This session left me wondering if there somehow is a fear of technology, or a taboo, in the field of disability studies. I need to investigate this more.
While the ethical questions surrounding assistive technology can be interesting, I also found it a bit strange to wonder if assistive tech is ethically acceptable at a conference where half of the audience depended on some kind of assistive technology — wheelchairs, hearing aids, guiding dogs, speech-to-text tools, sign language interpreters.
One of the reasons why there was almost no interest in technology could be that it’s a controversial subject. But on the other hand it could be just too obvious to be interesting. I’m very curious to find out which of the two it is.
Relevance for my research
The approach to inclusiveness, which uses this social definition of disability instead of the medical definition is very interesting in many ways for my field of study. This way of looking at disability and inclusion may move accessible web design away from an afterthought to a integral part of the design. There were a few direct parallels, like the research into the UX of museums from a wheelchair user’s perspective. And there were a few eye openers like the idea of including people with ID into research team. The focus on people with ID was much higher at this conference anyway than in my field.
This was a mostly academic conference. This is quite different from the (web) design conferences I usually attend. Maybe the talks were less entertaining, but I found the focus on proven facts to be liberating.
It was also the most inclusive conference I ever attended. And I really liked that. People were friendly, helpful, and there was no room for cynicism. Which is nice.
I’m definitely attending again next year. And I’m bringing some people with me as well.
3rd Disability Studies International Conference The Art of Belonging syllabus, Alice Schippers et al, 2017, Page 4. ↩
Reflection of a 3-year collaboration between researchers with and without intellectual disabilities, Tessa Frankena, Radboudumc, Nijmegen, 3rd Disability Studies International Conference syllabus, Page 76. ↩
To see or not to see: exhibition experience from the perspective of wheelchair users, Nadia van Vuuren, Erasmus School History, Culture and Communication at the Erasmus University in Rotterdam, 3rd Disability Studies International Conference syllabus, Page 52. ↩
New technologies and belonging: enhancement and dilemmas, Robert Maier, Femke Nijboer, 3rd Disability Studies International Conference syllabus, Page 68. ↩