Diversity and Representation
This question was raised in two recent posts by Laurentius Rex and Kevin Leitch. They ask: Should we be concerned that the parents who are blogging on the Autism Hub have a significant amount of influence in shaping the discourse? Are these parents somehow "hijacking" the neurodiversity movement and taking it away from its rightful owners, autistics (or people with psychological diagnoses in general)?
I don't think so.
That criticism arises from the disability rights motto "nothing about us, without us." And to the extent that we're talking about specific disability rights issues, I agree that the people who are directly experiencing these issues are the most qualified to speak about them. However, that does not necessarily equate to having a particular diagnosis. I would not, for instance, proclaim myself entitled to make policy decisions about augmentative communication devices simply by virtue of being autistic, when I've never used any such devices. Conversely, there are many non-autistic people who cannot speak and who use or could benefit from augmentative communication devices (because of stroke, head injury, etc.), and their views ought to be given substantial weight. More simply put, disability self-advocacy is about practical real-life needs, not parlor games with labels.
It's all very well to say that parents who have no disabilities should not be at the forefront of disability rights advocacy, and that makes sense as far as it goes; but I think we need to carefully examine just how far it goes, so that we're not conflating all sorts of other things with disability rights advocacy.
When we're talking about neurodiversity in the abstract, the concept encompasses much more than disability. It's about social acceptance of cognitive and behavioral differences, regardless of whether those differences are, or are perceived as, disabling.
To illustrate this point, here's a hypothetical situation: A young immigrant who was raised in a traditional Asian family graduates from school and gets a job with a large corporation. Because of his cultural background, he does not make eye contact with supervisors, appears very introverted by Western standards, sometimes misunderstands social expectations and the complex nuances of the English language, and gives the impression of being obsessively focused on his work.
One of his classmates, who is not an immigrant, exhibits precisely the same behaviors and has an Asperger diagnosis. He gets a job with the same company. Both of these young men soon become targets of bullying and discrimination in the workplace.
The immigrant, who clearly does not have a disability, files a complaint of an equal employment opportunity violation, claiming national origin discrimination. His autistic co-worker, on the other hand, does not belong to a protected group under the equal employment opportunity laws and can only claim disability discrimination, if he's to get any legal redress at all... but he is likely to have a hard time proving that he was targeted because he was perceived as having a disability. Chances are, he was just seen as different and weird, rather than as disabled.
Although this young man could perhaps win his disability discrimination lawsuit (and I'm certainly not trying to discourage anyone from filing such complaints), the root issue here isn't his abilities or the perceived lack thereof, even if that has to be the focus for legal purposes. The underlying issue is society's intolerance of anyone who deviates from its narrow cultural expectations.
Intolerance affects everyone. It's not the exclusive province of any particular minority group. Society is very fickle, and any of us might end up in a socially rejected group at some point in our lives, even if we originally were seen as part of the majority. In fact, that's exactly what happened to many autistics. When the Asperger diagnosis came into use in 1994, large numbers of people were classified as having a mental disability, even though their particular quirks previously had been accepted as within the range of normal human variation.
As I see it, the Autism Hub is the blogging equivalent of a diversity seminar in which people from different backgrounds get together and discuss how to overcome prejudice. Everyone's opinions and experiences are valuable in this context. When parents describe how they learned to accept their autistic child's differences, they are teaching other parents how to do the same. Although we may dispute whether these parents ought to be viewed as disability rights advocates, we shouldn't be so caught up in that dispute as to overlook the big picture—that what they are doing is vital to neurodiversity.
If Kev, Kathleen, and Estee all went out and got an Asperger diagnosis tomorrow, that would not, in my view, affect the validity of their message one iota.