There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia. I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey. But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material. Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.
I very much feel that whenever possible, it's important to listen to people with autism. I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook. Thank you, Sophie! However, I kept feeling when reading the criticisms---what about Janey? What about kids like Janey, who cannot speak for themselves?
Of course, in some ways, Janey can speak for herself. She can tell me her basic wants, if they are in words she says---"Snuggle on the bed! Want cheese! Want Chinese food! Do you want to take a car ride?" That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it. She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much. Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.
And that is where I come in, and my husband Tony, and my sons. We speak for Janey. We might not always get it right, but we try. We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.
Tony wrote about life with Janey as a guest post here, and I loved it. William and Freddy, my sons, have written guest posts too. When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog" And of course, she can't. Or can she? I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing. I'm sure I haven't been perfect. I'm sure there are things Janey would have wanted everyone to know that I haven't written. But I've done the best I can.
If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people. Should I never speak for Janey? Should I wait until the day that might never come, when she can speak for herself? I don't think so. I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey. She deserves that. When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice. She deserves that.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
1 comment:
I'm sorry that this comment doesn't really fit this topic, but I wanted to get the info to you. My daughter used to manage summer sports camps for a university. I was telling her about the difficulty you have in finding programs that Janey can attend. She told me that Janey should be able to attend any program. She has a disability, and under ADA, accommodations must be made. Austism is an ADA covered disability.
I explained that Janey needed a one-on-one aide with her at all times. That shouldn't be a problem, my daughter said, and in fact they had just had an autistic boy in their cross country camp who needed that. "We asked the family if they had an aide they preferred, and we tried to get that aide." You have to make reasonable accommodations, and the courts look at the university to see if it can afford the aide, not at the specific program, like the summer camp, that the university is sponsering.
Actually, my daughter explained that a one-on-one aide should be an easy accommodation to get. It's not very expensive. What is really expensive is equipment, such a swimming pool lifts or vans. She said they never turned down a child who needed a one-on-one aide.
The topic came up because her nephew was refused entrance to a summer camp since he is diabetic, and the camp did not have a full time nurse. Oh no, my daughter said. A nurse is a reasonable accommodation, and the camp is going to have to provide one.
I hope this helps. I know how good you are at fighting for Janey, Suzanne.
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