Tuesday, October 12, 2010
Reflections on the Autism Speaks Protest
So I spent Sunday morning protesting the Autism Speaks Walk. I took part in the protest as an associate of ASAN. I am not, though, an actual member of the group even if I did originally help found the Columbus chapter and even if I continue to view it as my family here. For this reason nothing that I say should be taken as representative of ASAN, a liberating position if at times I am critical of them. (Melanie, Noranne and Aspitude have already posted on the event so see them for an alternative perspective.)
We had a dozen or so people, Autism Speaks had about eighteen thousand so it gives an idea about what we are up against. Standing around waving signs is not an ideal way to win friends and influence people in the best of circumstances. In our case, the area we were given by the university to protest was away from the arena where the walk was being held, across a giant parking lot, across a busy street. People driving into the parking lot could see us and the end of the Walk was right by us, but other than that we were irrelevant. I know someone in the OSU band, who performed at the event, and she told me later that she was unaware that we were even there. Maybe it would have helped if we could have provoked some sort of reaction. In truth, though, besides for the occasional catcall of "you're stupid," "get a life" or "go home" we were pretty much ignored as we deserved. Why should anyone pay attention to some people waving signs? If anything the people of Autism Speaks were very nice to us. One of the organizers came out to offer us water if we needed it (we had brought plenty of our own). If we did not succeed on the ground we did succeed where it counts most in the twenty-first century, media. We were interviewed by the local ABC and NBC stations. The credit for those needs to go to our front office, particularly Ari Ne'eman, and to those in our group who made the phone calls. State representative Ted Celeste also stopped by. Representative Celeste is a good friend of the group, whom we have spoken to multiple times in the past. He apologized to us for having a puzzle pin on his lapel, knowing our strong opposition to its use. The fact that Celeste bothered to even talk to us in such an environment (we being outnumbered more than a thousand to one) says a lot about him.
I can only admire Autism Speaks for creating the sort of trans-generational, trans-community networks that they have. Central to their fundraising and what the Walk is meant to demonstrate is that autism is first off a family issue and second a community issue. For this reason you did not have just autistic children walking, but their entire families as well. And not just families, you had large groups of friends and neighbors as well so surrounding every autistic child is a large "team" of support. Now as someone from the group pointed out, this entire Walk was designed with neurotypicals in mind and not autistics. One can only imagine the hell some of these kids were being put through, taken off of their schedules to a place with lots of noise and people running around. A step in the right direction for Autism Speaks would be if it would openly fashion itself not as an organization for autistics, particularly as autistics are not represented in its leadership, but as a support group for the parents of autistics. However difficult it might be to go through life autistic, it cannot compare to the challenges of being the parent of an autistic child. These parents need and deserve the support of their families and communities.
This brings us to the trap that Autism Speaks has maneuvered us into, one that we have failed to solve and until we do we will not be able to stand up Autism Speaks in the public arena; Autism Speaks has pitted us, not against their front office, but against the parents of autistic children. Say what you want about the front office, their eugenics policies and their misuse of funds, but that is not going to help you deal with a parent grasping for solutions in the here and now. The toughest moment of the Walk for me was not the taunts (I am a brawler and cannot resist a fight); it was when that organizer, who offered us water, followed up by asking us who is going to speak for his son who is unable to speak. I admit that the person is not me. I have not spent a single day being the parent for that man's kid nor do I have the solution to his problems. The most that I can say is that I am the obvious ally, who would be willing to help him, as long as I am not alienated by talk of disease and cure, lines of discourse that will make it nearly impossible for me to hold down a job and eventually get married. There was a good conversation with him and the group and he was really nice to us. We spoke about advances in communication technology that offers alternatives to verbal speech. After the man left someone from the group made a crack that the man was prejudiced with his talk of "all people communicate by talking" Fine, maybe they are right and this man suffers from petty prejudices (don't we all); that simply dodges the real issue at hand that this man is on the front lines dealing with the real challenges of autism and we do not have any readymade solutions to offer.
What we need to have is a dialogue with the parents. All this rhetoric about Autism Speaks giving out $600,000 salaries and only spending four cents to the dollar on families very well may be true, but that simply makes us sound like every other political group this time of year going negative against the opposition. I do not wish to fight all those parents, friends and family who came to the Walk and they certainly deserve better than political attack ads. If given the chance, here is what I would want to say to them: I acknowledge the difficult situation that you are in and that I am in no position to judge you as to whether you are truly "tolerant." As someone on the autism spectrum I am incredibly fortunate in ways that many of your children are not and because of that I feel a sense of responsibility. Whatever the future of autism holds I am here with you for the ride. That being said we need to consider some hard realities. First off, whatever theoretical debates we can have about using a magic pill to cure autism, no magic pill is on the horizon. This leaves us with ever improving methods of schooling and therapy, all of which will remain expensive. Secondly genetic screening and finding out the root causes of autism is not going to help a single child with autism presently. Thirdly, every one of your autistic children is going to become an autistic adult and that is going to require a system of its own that is not in place at present. Autism Speaks, for all of its high sounding rhetoric, offers nothing to help you with any of these real issues. For your sakes and more importantly for the sake of your children you need to start talking to other people; perhaps to people who are on the spectrum, but are still leading productive lives. They might not be able to offer you a cure, but they can at least open up a serious conversation as to how live with autism.