This is so so beautiful, I've been listening to it for the past hour and a half and it almost made me cry. Whenever I've read and listened to interviews with Ari Ne'eman (head of the Autistic Self-Advocacy Network, as I'm sure you know) I've had a tendency to be sort of judgmental and wonder "why is he saying that the way he is, why doesn't he explain it better." But the truth is, he is really forced into situations with the mainstream media where he has to deliver soundbites and is constantly defending himself against accusations that he doesn't have an ASD or doesn't have a significant ASD or thinks that kids with ASD should be allowed to hit their heads on walls.
This interview is with a radio show that is involved in mental health rights--not something I know much about, but it seems to tie into ASD rights in many respects. And the interviewer is just so decent and actually wants to listen to Ne'eman, with the result that he talks in depth about his experiences as a teenager in special ed where they were trying to train him to act normal. When he is actually given time and space to talk about that and make points about it, he does a really good job explaining some of the problems in the way ASD kids are "treated" a lot of the time.
He's talked about himself in interviews before, of course, but it's frequently been in a context where the interviewer is basically demanding that he justify himself--I'm fond of NPR, but the person who interviewed him there asked for an example of a recent incident that reminded him he is autistic. Why do they need to know that? Also, so much time in those interviews is taken up with him using the phrase "disability rights," and then the interviewer jumps on it like, "SO YOU ADMIT AUTISM IS A DISABILITY." Or if he doesn't use the phrase "disability rights," the interviewer says like they think he doesn't know, "Well autism is disabling! Kids hit their heads!! It's a disability! If you try to say it's not a disability then kids will just be allowed to hit their heads all the time!"
This interview is the first time I actually feel like I understand who Ne'eman is. And I feel bad that I have had such critical reactions to his interviews before--I mean, the things he has done are massive, and he's my age, and he went to a school where they tried to train him not to be interested in public policy. Well, they sure failed in that endeavor. This is amazing shit.
I like how the interviewer pointed out that behavior therepy to teach a "second language" could be used to help a person gain access to another culture or it could be used to denegrade and eliminate their "first language."
ReplyDeleteyeah, that was really good! I hope Ari Ne'eman uses that in interviews in the future because it's such a good response to the stupid strawman that you have to either do really fucked up treatment, or no treatment.
ReplyDeleteThanks, Amanda. I'll make sure to keep that in mind. :) It isn't often that I have the opportunity to participate in interviews like the Madness Radio one. DC, where much of my work is now, is so driven by soundbites and by the mass media that it makes it difficult to communicate the broader context of a message. Still, I enjoy the opportunity to do more in depth discussions when I can, particularly when they occur in contexts that are already familiar with disability rights and advocacy. They may reach a smaller audience, but I think the message travels with more fidelity.
ReplyDeleteI really like your blog. I particularly enjoyed your piece on behaviorism and spoon theory and your "I'm a fake person" blog post. I've found myself thinking very similar things about how I operate to how you describe spoon theory - I usually refer to it as "bandwidth" or cycles, for more of a computer analogy, but I think it is the same idea. You should consider writing for a broader audience. I think you have a lot of good things to say.
Where are you in Ohio? Are you in touch with our Ohio State/Central Ohio ASAN chapter yet?
See, this is why I shouldn't write about people on the Internet. I know it's not your fault that you have to be sound-bite-ish and I was just trying to explain who you are to my friend and I found all these people on the Internet saying they want to kill you. You're a brave person.
ReplyDeleteI don't know what "writing for a broader audience" means. I don't know where I would put my writing that would make more people read it. I'm really glad that you like it, though. I go to Oberlin so I'm about an hour from Cleveland and not very near the Ohio ASAN chapters, I don't think. It would be nice to start an ASAN at my school, but we only have 3000 students so I don't know if we even have enough ASD people.
Thank you so much for commenting.
Are you serious? People actually threaten Ari's life? Amazing. How can people be so evil?
ReplyDeleteI'll keep you in mind if an opportunity for greater writing exposure comes to my attention. I'll try and stop by your blog more often, and if there are any future posts in particular that you would like to highlight, send me an e-mail and I'd be glad to take a look.
ReplyDeleteStop by the Disability Services office at your school and see if they might be willing to connect you with other students on the spectrum at Oberlin, should they be willing. Also, you may want to see if you can reach out to folks nearby but who aren't students. Our Ohio State chapter has pursued a similar strategy. If the interest is there, we can provide technical assistance.
My pleasure. As I said, I'll try and swing by this blog again in the future.
They probably wouldn't give me names (right?) but I'm sure they would be willing to send out an email to all the students who are registered as disabled, and I might find people that way. It's too bad, I won't be back until next term and there's a kid who might have helped me who is doing his last term of college now.
ReplyDeleteMaybe I'm stereotyping but I tend to think that verbal people don't get diagnosed with ASD much in the middle of nowhere in Ohio. Not many of the nonverbal people I know have communication devices either. So I don't really know how we would find people, although it would be nice.
I guess I will email the head of disability services at my school and ask her, though. It would be nice to have found people already by the time I get back.