Through the week-end blog hop over at Single Mother Ahoy!, I came across a post supporting Autism Speaks and debunking the argumetns people have against it. The first of these is that Autism Speaks has no autistic people on the committee. That doesn’t bother Melissa Hopper, the post author, presumably because she’s a parent. It does, however, bother me. Since every autism blog (and though I don’t really write an autism blog, I sometimes write about autism, so…) should have a post for or against Autism Speaks, here’s mine. It isn’t, by the way, directed just at Autism Speaks, but at every parent-run organization aimed to represent the entire community of people with a particular disability.
Suppose, I wrote to Melissa, that your son were gay. Would you raise money for an organization that had only parents and families of gays on its committee? I realize that there are organizations like PFLAG (Parents and Friends of Lesbians and Gays), and Melissa might in this hypothetical scenairo want to join them. I mean, there’s nothign wrong with parents of children or teens or for that matter adults who are different wanting a place to be represented too.
The thing with Autism Speaks and possibly other organizations is that 1. they pretty explicitly exclude autistics from the committee, and 2. they don’t support the inclusion or equality of autistics, choosing instead to support their eradication.
Now I do realize that autism is a disability whereas homosexuality is not. People may disagree here, but I do see autism as a disability. However, that still doesn’t mean that social inclusion and equality shouldn’t b primary goals of an organization claiming to speak for that disability population, particularly since the majority of adults with this disability advocate this.
Once Melissa’s son grows up, I asked her, does she want to be his representative for the rest of her life, or does she want him to be able to speak for himself? I am hoping for the latter, as most parents want their children to grow up to be able to speak for themselves. Now I can totally see why at age three Melissa’s son can’t speak for himself and he needs his mother to do so. I totally also see that right now the number of autistic children (who need their parents to speak for them) is greater than the number of autistic adults. In twenty years or so, this will not be the case anymore. And while there will still be autistic children, and hence the need for a parent organization, an autistic-run organization should have far more to say. And just for your information: there are already a number of adults who grew up with parents supporting the likes of Cure Autism Now, who are now old enough to speak for themselves and vehemently disagree with the cure position. Christine Motokane, whose book I reviewed on Wednesday, is one of them.
In the Netherlands, there ae two organizations for the schizophrenia community. One, Anoiksis, is run by people with schizophrenia themselves, while the other, Ypsilon, is run by families. I can see why there’s a need for both, but they cooperate on some level. Same for the Dutch Autism Society and Persons on the Autistic Spectrum. (The Autism Society has autistic members, like myself, but I don’t know if they have anyone autistic on the committee.) Autism Speaks has never sought any form of cooperation with autistic-run organizations. It will never do so, because Autism Speaks advocates the eradication of autism rather than the equal rights of autistics.
Now I do know there are autistic people who support Autism Speaks, and John Elder Robison used to be a token a =utistic for them. I don’t even have strong opinions against all of Autism Speaks’ positions – I used to read their blog and it wasn’t too bad. I also wouldn’t mind Autism Speaks existing if a major organization representing autistic people themselves were getting as much support. Like with the Anoiksis/Ypsilon thing, I can see the need for a parent organization. But Autism Speaks aims to speak for autistic people without having a single autistic person on the committee, without cooperating with autistic people, and without advancing the inclusion of autistic people. If just one of these were the problem, oh well, but now that all of them are, I have major concerns.
Melissa’s son is just three. She doesn’t likely think of him representing himself. But he’ll eventually reach that point, and by that time, I can only hope he has his mother’s support rather than opposition.