A long-delayed reply to the Schafer Report

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The Schafer Report, by the way, is going away.

But there was something I wanted to bring up about an old issue of it, that I never got to say quite how I wanted to.

It’s part of In Defense of Behaviroal [sic] Treatment for Autism, the old smear campaign against Michelle Dawson, that attacked the idea of autistics wanting or being able to communicate, in order to discredit her, and us, without having to actually take on our arguments.

Here are some of the things that were said in that report.

One of the first articles said things such as this, and many have echoed the idea:

…autistic people would not, by definition, be interested in a career in communication…

…even as they behaved in ways that a person with autism would never choose to do (seek public speaking opportunities, seek recognition, constantly communicate, etc.)…

Autistic people, as he is defining us for his convenience, do not communicate, do not seek out opportunities to communicate, do not have any interest in people, and so forth. Even though these things are proven false, that’s what’s printed in this edition of the report.

Some of the other articles acknowledge that some autistic people communicate in words, but that, for instance:

Suppose you were the individual who, without treatment, was destined to be standing alone in a corner of an institution, dependent on everyone around you to take care of even your most basic needs, rocking perseveratively and eliminating in your clothing, unable to sample what life has to offer. Would you like someone who could speak and could interact in the everyday world speaking on your behalf and counseling against treatment? No, I wouldn’t either.

In that case, the person has decided that it’s mainly bad if autistic people who can talk (or write) say certain things about autism or autistic people.

So it’s okay if we talk, we can remain autistic then, but it’s not okay if we say certain things.

And then, after all this, commentary by parents and professionals to the effect of either “Autistic people can’t communicate” or “Autistic people who can communicate should only stick to certain topics,” here comes the following, which is printed without any hint that the person is not autistic:

David Corbett was very animated with him and asked him about his autism, to which he replied by stretching his arms out really wide, “I used to have a lot of autism now I just have a little (he brought his hands close together to show a little), but I want to have none (to which he dropped his hands down to his side and told them that dropping his hands meant zero).

David asked him about a letter he had written and gave him a copy of it. David asked him if this was his letter, he said “Yes, and I’m working on making my printing better!” David asked him if he had given his letter to the government, he replied “Yes, I took it to the government that lives close to our house”.

David then asked him if he would please read his letter for the court, which he did with great pride.

David then thanked him and told him it was a great letter! David asked him if he had worked hard himself, and he said “I worked very hard, though Mom says that I got rid of the autism myself by working hard, I needed my tutors they helped me a lot, I wouldn’t have been able to get rid of most of it without my tutors”. He continued, “It takes a long time to get rid of it, it just doesn’t happen quickly, it’s not fair to take the teachers away just because they are six”.

So, in that case, an autistic boy not only communicated, not only spoke out loud and wrote, but went into a court room and engaged in public speaking.

And nobody in the Schafer Report questioned that he was autistic. Bobby Newman did not say, “He can write, he’s not autistic enough to speak for these children.” Jenny Ladew did not say, “He hasn’t raised an autistic child while juggling a family and career so he has no right to comment.” James Mulick did not say “He is not autistic, because he speaks, and real autistic people would be uninterested in public speaking.” Lenny Schafer did not call him an “Asperger imposter”.

Because if you say the right things, nobody’s going to question you.

As I was writing this, another thing came up that’s somewhat related to my last statement.

The Autistic Bitch from Hell wrote On Authenticity, about a rumor she heard (I don’t know how substantiated of unsubstantiated) that someone in the autistic rights movement is not who they claim to be, is in fact a journalist working on a book. She further writes that it’s hard to want to say anything, because the person could do us a favor with the coverage.

I wonder if this is another instance of “If you say the right things, nobody’s going to want to question you.”

Marty Murphy, a middle-aged speaking autistic woman, posed as a 25-year-old non-speaking autistic man, and was defended by many people because of her message. I was offended by the fact that, as a 25-year-old non-speaking autistic person myself, the stereotypes of the sort of person I am were being exploited to send a message I would never send. A lot of “autism is evil” types were fine with her deception, and still are, because they think it’s the message that counts, not the deception.

Is it really any better when one of us turns out to not be who they say they are? I mean, I’m hardly the Autism Police (I in fact usually detest that form of policing), but if someone is not who they say they are (and I don’t know enough of the facts to know for sure), and lots of us protect them, how is that better than people protecting Marty Murphy just because they liked her message? If we are enraged by other people doing that, should we really be doing it?

I do think there is a difference between choosing what to say and what not to say, and the fact that all words are in essence lies — and the act of deliberately deceiving people about a major aspect of who we are, by deliberately lying. Some of us hide certain aspects of our lives, sometimes for good reason. Some of us also say things that people take wrong.

For example, I am frequently represented as having spent my entire childhood in an institution, as never having spoken in my life, and as only having been in one institution, usually people assume the kind reserved for developmentally disabled people. In fact I only spent part of my childhood in institutions, I spent time in several of varying sizes and shapes and with varying kinds of people inside, and I have produced plausible-sounding speech sounds with my mouth in the past. Some people view me as misrepresenting myself when they find this out, or even as lying about events in my life, but it’s usually more a matter of the fact that I’m not going to tell my life story every time I meet someone, and my life story defies enough stereotypes that people’s initial assumptions are likely to be wrong. It’s simply too complicated to give out every nuance every time I talk to people, and I am aware that people assume all kinds of things that I don’t have the time to correct them on. If I cannot now speak, have spent time in institutions and say so, and did so in childhood, people fill in the blanks with the rest.

But there is a difference between all that and saying that we really are unemployed when we have jobs, or other sorts of deliberate lying. Posing as an autistic person when you’re really a non-autistic journalist is different than either not having the exact words for the truth or choosing which parts of the truth to tell.

And I don’t see any difference between that and Marty Murphy.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

8 responses »

  1. Everybody should be held accountable for what they say. Marty Murphy said something very poisonous as well as not true about autistic people in particular those who do not use verbal means of communication. It is just as bad as Lenny Schafer shaming some people for speaking in public. I think David was coached. It was pretty powerful for him, a reinforcer, so to speak. When I speak in public I try to speak my own words where possible and have them in writing again where possible, so people know I am saying my truth.

    As for the journalist, I went like a chook with a bad head thinking it was Jim Sinclair. It could not be he has not done journalism. Is it a big nationally read newspaper in the United States? These issues affect us internationally as I am sure you will appreciate.

  2. Jim Sinclair’s been around too long, and is too obviously and consistently (to my eye) autistic, for it to be xem. Xe’s just one of those people who’s been rumored about a lot, like Donna Williams. Jim is a very private person, but xe isn’t hiding something of that nature.

    I don’t know anything about it other than what ABfH said on her blog. I always worry, too, about wondering too hard which of us is “real” and which is not, I’ve seen people get caught up in that and see “fakes” everywhere, not my thing at all (see next post for reasons why I tend not to jump to that conclusion very rapidly about others). I used to know two people, one autistic and one non-autistic, who were convinced that there were no “real” autistics on the Internet at all. And I have been accused of more than my share of misleading when it was really people’s minds that were misleading them.

    But… yeah. It does worry me a lot. I am worried in particular about whether anyone’s personal experiences are going to be stolen for the monetary gain of this person.

  3. It reminds me of one movie I saw at http://www.autism-recoveredchildren.com/ where at one point one “recovered” autistic boy is asked what autism is and he says “autism is this, and this, and this” doing some of the stims he used to do. To which I wonder if he’s aware of how autistic thought patterns differ. I don’t know that kid well enough to know, but I know in my casde I was rereading a diary I kept at 11 and I knew I was different but not how much. I attributed much of the differences I actually noticed to having been abused, and there were plenty I didn’t notice at all.

  4. Pingback: Ballastexistenz » Blog Archive » Let’s play Assumption Ping-Pong!

  5. I also ran across your blog by accident, but find what you have to say interesting. I’m the mother of an eleven year old boy who has autism. He speaks, but doesn’t communicate well yet. I struggle to understand what’s going on inside him and to help others in the community, particularly his teachers, understand what he is capable of. My son’s relationship skills and communication skills have improved dramatically in the past couple of years. I know there are so many adults with autism who have come through what he is experiencing right now and any insights you or others out there have that can help steer us to effective supports, curriculi, or therapies would be appreciated.

    Thank you.

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