Why Deaf people should go into research

I read this article on Limping Chicken today, talking about why Deaf people should go into research. Thomas talks about how research is brilliant and how it benefits the research and the researchers, but I think it goes even deeper than that.

I come from a mental health background and the need for Deaf research into Deaf experiences is particularly evident.

Imagine we want a questionnaire for autism. Pretend there is one for hearing kids. It's really good. It gives you a score out of 100 for imagination, social skills, and social language. Get less than 50 on all three and you have autism. Pretend. What about Deaf kids? You could translate it into BSL, but how do you know the translation is any good? Back-translation is the methodology of choice, but it only considers linguistic equivalence (not clinical) and for BSL a shoddy SSE translation of the items will back-translate more apparently equivalently than a decent culturally relevant interpretation. I think back-translation stinks for these purposes. But even if it were flawless, what is it measuring? Is delayed language in Deaf kids the same as in hearing kids? No. It might index autism for hearing kids, but for Deaf kids it also indexes having hearing parents, poor education, lack of confidence, etc. Likewise social confidence and social skills. If they score low are they autistic? That 50-point cut-off is based upon research on otherwise-completely-normal hearing kids. Anybody with a confounding condition is excluded from the study that gave them the normative sample and defines the cutoff. Like all the Deaf folk. There cut off is somewhere else.

So you need a normative sample of autistic and non-autistic Deaf kids against whom to compare your possible autistic kids. Do THAT research. Should be easy right? Nope. How do you identify the autistic deaf kids? There's only hearing assessment tools. Catch-22.

And anyway the entire CONCEPT of autism (or anything else) is based upon clinical experience and statistical cluster analysis of  symptom presentation in HEARING PEOPLE. It doesn't make much sense for Deaf people. What IS autism for Deaf kids? It's probably a different thing. So do THAT research. That's REALLY where to start. Deaf kids' cut-off is not elsewhere on the number line - it's on a different number line entirely!

And you need to do it in BSL. And you need to write it up in BSL. In a BSL journal. Because if you let English into it it is contaminated with Hearing-world concept-space again and you'll never get the stain out.

This level of paranoid obsessionality is why I don't do research.

Jim Cromwell