Action Alert: Research on Healthcare and Disabilities

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Tuesday January 12, 2010 · 8:24 PM PST

2010/01/12 · 20:24

If you're at all familiar with my previous entries, you'd know that I tend to focus on disability rights, and particularly the rights of individuals on the autistic spectrum. It's only natural; I'm an Asperger's autistic myself, so I tend to write about what's familiar to me.

You'd also know that I don't look too kindly at organizations like Autism Speaks, which tend to do a lot of talking about autistics without much listening to reciprocate.

But I come bearing some good news for a change this time: you-- yes, you, J. Random Kossack-- can help to improve the healthcare experiences of people with disabilities, and autistics in particular, by taking a survey from the comfort of your own home (or any other Internet-connected computer). And you can do this whether or not you're disabled, and whether you're neurotypical or on the autism spectrum, as long as you're 18 or older. You might even win a $25 Amazon gift certificate at the end.

Sound interesting? Read on...

So how's this different from the research carried out by the likes of those organizations that I dislike? I'll quote the project's home page, with some further discussion on my end:

Inclusion: Studies have been developed in collaboration or consultation with individuals on the autistic spectrum.

This is, of course, in stark contrast to certain organizations which, even when there are plenty of autistics interested in the job, refuse to involve them in the planning of their studies, much less in their leadership.

Respect: Strengths-based and respectful perspectives and language are used in all phases of research including reporting.

Unlike, say, a certain promotional video I've railed at before, the developers of this study treat consumers respectfully.

Relevance: Research questions are relevant and useful to the autistic adult community.

Unlike those studies that are mainly interested in finding ways to stop autistic adults from existing in the future, the results of this research will actually help autistic adults in the here and now.

In other words, these researchers are doing everything right, as far as I'm concerned.

So what do you have to do to participate in this research? It's quite simple, really. Just go to http://thegatewayproject.org/ from any Internet-connected device, register for an account, and take the survey. It's free, it's pretty simple, and you'll be entered in a drawing for a $25 Amazon gift certificate after taking it. You can take this survey regardless of whether you're neurotypical or non-disabled; in fact, I encourage as wide a population as possible to take this survey, so that the researchers involved can get as useful a sample as possible.

Here's the necessary IRB info regarding this project, just for completeness' sake:

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

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