10:04pm June 10, 2014

Autistic History: Input from Autistics and Family Members during the Hear Our Voices Campaign

So when ARK decided to do their “Hear Their Silence” rally in Washington in the year 2000, autistics.org decided to do a counter-rally called “Hear Our Voices”.  Here was input given by autistic people and family members during that campaign.  Try to remember this was a different time, and back then most autistic people accepted ideas that today would never be accepted in what the autistic community has evolved into.  There barely was a politicized autistic community, and what there was, was far more diverse, which wasn’t always a bad thing even though it meant running into opinions that I found offensive, a lot.  Anyway, here’s the original post:

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(Pardon me for just sticking some e-mail on the web, but I want responses from as many people as possible as fast as possible, and so I’m not going to bother with writing something specifically for the website right now. Plus I’m having a painful repetitive strain injury flare-up from dealing with the e-mail and long conspiratorial IRC channel chats I’ve been dealing with. This is a dialogue that should not be held with me– they should be holding it with the autistic community. I’m just a webmaster. Moreover it should have been the first thing they did, way back when they were organizing this.)

From: Laura A. Tisoncik <tisoncik@autistics.org>

I have just gotten this e-mail.

Suggestions, anyone? As far as I’m concerned, the *key* issue for me is the recognition that autistics are central, not marginal, to the issue of autism, and that parents/professionals *must not* act without us as *full partners* (if not more… after all I have more right to my own life than my parents do). Changing words is not the same as changing the balance of power.

But forcing them to change words *is* a change in the balance of power here– not enough, mind you, but assuming they can change enough not to be impossibly unbearable, it would be worth it to grab the victory and run… and of course plot on to challenge the autism establishment and win lots more in the future :)

So: input, please– and feel free to forward this on to any other autistic, ally, or mailing list. where there is interested.

I need replies to this ASAP!!!

———- Forwarded Message ———-
Subject: How do you want us to Hear~Your~Voice
Date: Wed, 29 Mar 2000 07:01:46 -0600
From: Todd Guppy TGuppy@lgc.com

I don’t know why I am asking - I’m sure my intentions will be misinterpreted again, but how exactly would you want us to make you feel included? What could we say at the rally that would make you feel included?

I have added a line to my little thing I am doing at the rally - because yes, it needs to be there. Adults with autism are making a difference in society and I did overlook that. I do speak of children, because I have a child. But I know he will be an adult someday.

We will change the number, consider it 1-877-on-autism, or simply 1-877-662-8847

“This is for the adults with autism - those giving us glimpses into their lives, (meaning TempleGrandin..) sharing their experiences with us (those on the lists who have) - allowing us to "Hear their voices.”

How many times must we try to explain and make you understand - we did not mean to make you feel excluded. Actions speak louder than words, the number will be changed, what would you like to be said on your behalf at the rally - How do you want the Nation to “Hear~Your~Voice” ??

Michelle

Feedback I’ve gotten as of right now:

I agree with all of your comments.
-an autistic

If you don’t tell her what is needed, then she can honesty say she tried and that she asked. Tell her everything you want. Then if she doesn’t comply, it puts her in the wrong again. But don’t stop at alittle. Don’t make it easy. Tell her that you want no mention of a cure at this rally. Tell her you want equal power. It the autistics voice that really counts here! Tell her that the rally needs to be about funding for services, not a cure. Make her change the whole damn thing if needed!
-an ally and mother

A comment injected here… it’s not reasonable to “legislate” what each speaker will or will not say (people do have a right to their opinions, and a right to express them). Therefore “no mention of a cure” doesn’t seem to be a reasonable demand to me. That the organization divest itself of all the calls for a cure in order to make room for our views is reasonable. Where things get tricky is who is speaking– the speaker list is highly unrepresentative. And of course the power issue, and the issue of adult services remains (judging from the hate mail I’ve gotten from angry parents, most of them seem to expect their kids to either end up in institutions or end up “cured” or fully “recovered” (hmmm… what’s that name of that river in Egypt… :-))– the rank-and-file of ARK, anyway, don’t see adult services as serious issues… which, circling back, is exactly why the power issue is central) – Laura Tisoncik

who cares how reasonable it is :) if they reject it, put the email up on autistics.org and let the search engines get it
-an autistic

Why “say on behalf”? Why not invite autistic speakers to speak for themselves? And with good intentions – also help them get there! (and even if not, today’s technology provides other means to hear people’s voices).
-an autistic

i want them to stop trying to ‘cure’ us…maybe we dont wanna be cured! maybe some of us enjoy being autistic (tho i wouldnt mind if i never overloaded again :) ) Proud to be an autie–parents, don’t speak for me, I have my own voice! Don’t try to cure me! I am who I am, and proud of it. � chacun son gout!
-an autistic

Well I see they did change their number… Took a look. Hmmm I agree with the others comments on this I’ve read so far. Don’t simply settle; hell most of us have settled most our lives. Tell them to start with *respect* and to dump assumptions… None of us is stereotypically anything… That for some stupid reason most places figure you turn 18 and thats it punt… But things aren’t quite that simple. Early interventions are important to help with coping skills etc(I say that as a parent… however they need a rights of the child act like we have… Because their idea of therapy sometimes just breaks my heart that that crud still happens ya know…)… However as an adult we need to quit falling between the cracks with unfair criterion for services. Such as where I am requires IQ to be less than 70 for a majority of services that would be applicable for adults. Some lesser services are there but only if you are considered to have a severe physical or mental imparment that is in docs opinion truely incapacitating(of which this group may do less well than those with a assumed/assessed under 70 IQ yet they get less services). Tell then in short equal rights for all… equal accessability. Support to peoples right to be independant and follow their dreams. Everyone has the right to fullfill thier potential or follow their dreams… Without proper supports or services that is near impossible or very difficult in the least. 
-an autistic

if you want my opinion to forward – we need diagnoses for adults, and we need help with complicated stuff like paying bills
-an autistic

about words etc, they’re still big on looking into 'causes’ and 'interventions’ and both of those worry me (ark) 'intervention’ sounds kind of like 'stopping something in its tracks and trying to make it something different’
-an autistic [ETA: I can sign my name to this now – Mel Baggs, age 19]

(response to the above) When the principal told me the new aid was getting “intervention” training and “behavior modification” training I asked what they meant- they were learning the “proper” way to restrain. Now they have designed a “pilot” program. It’s a cement block room with no window (a safety issue) 3 kids, 2 adults (who don’t have to be teachers because it’s a pilot program). They are mad because they hired the main person & I refused to send my son back
-an ally and mother

While you feel that your rally was misinterpreted, I feel you have misinterpreted the online rally. Most autistic adults probably feel the exact opposite than a lot of parents of autistic children. The concept of a cure is an extremely sensitive issue for both sides.

I and most autistic adults that I have met would not prefer a cure. We feel that a cure would take away a lot of gifts associated with autism (common positive autistic traits are visual thinking or increased intelligence). There are some disableing features of autism (such as lack of motivation, lack of social skills, or social understanding) in addition to positive traits. However, diversity is necessary for the survival of the speceis, and autism is an important aspect of the diversity of the speceis. Albert Einstein was definately autistic. Thomas Edison and Nikola Tesla are very likely autistic as well, and there is a lot of speculation about Bill Gates having Asperger’s. In fact, I have heard almost all of the most famous scientists and philosophers have been suggested to have autism more than one time.

There is also the issue of all autistics being different and just because one autistic person wants to be cured, doesn’t mean that a cure isn’t right for some. Some autistic people may do better if they were cured. However, I feel that the decision of whether or not to “cure” an autistic individual should be up to the person being cured. If a cure were available, the majority of autistic people who would receive the cure would probably be those whos decision is made by people other than themselves.

It is also said that 75% of autistics are low functioning and mentally retarded. This is not true. The majority of autistics are high functioning. It is only reported to be 75% because those who are lower functioning are more likely to be diagnosed. Autistics (high and low functioning) can score on IQ tests lower than their IQ actually is, and those who are low functioning could have very high intelligence and nobody would know it.

It is really hard to be an autistic child and have two parents controlling you. I have been an autistic child up until a week ago when I turned 18. Since I was diagnosed (I was diagnosed at age 10; I was lucky that they messed up when they tried to diagnose me at age 5) my parents and teachers had tried to force me to socialize with people when I really didn’t want to. Socializing only made me miserable, anxious, and nervous. If I knew I had an assignment to socialize I would think about it and worry about days before, and would feel as if I was facing the end of the world. My parents even tried to use the state’s money to buy friends (pay people $5/hour) to do things with me. 
-an autistic

these people at this rally need to realize that autistic children *do* grow up into autistic adults, and services/funding needs to be provided for accordingly…maybe, there could be something that helps us go to college? i.e. some sort of program that pays part or all of tuition/lab/library/textbook fees so ppl who do want to continue their education beyond highschool can, without having to struggle with stress from various financial problems. Yes, there is financial aid, but sometimes this isnt enough. Also, (for the ones who dont want to continue education, or just need help with this) there ought to be some sort of job help– i.e. finding out our interests/goals and helping us find a good-paying job that incorporates these things so we’ll be happy with the job and also make enough money to live comfortably…well, this is all i can think of for the moment…
-an autistic

Well maybe it’s just me and I have no idea if he has any connection other than being an opportunistic, vindictive, DUMB Republican, but if it were me, I’d suggest they drop Dan Burton as a speaker for one thing. He raises my hackles.
-unknown dx

OK, this is gonna be a lot shorter than it ought to be, but I need to say*something* about this. I was first contacted by someone from this rally some months ago. I do not know if the person who contacted me is the same person Muskie has been corresponding with. I would have to spend some time searching through my saved mail files to find it, so this right now will just be a quick rundown based on memory. The person wrote to me asking if I would speak at the rally. I looked at the web page that was up then, and wrote back expressing some grave reservations. I expressed that the sender’s email address (“ENDAUTISM”) raised my serious concern that she was holding and promoting an idea of autism that differed radically from anything I’d be interested in supporting. I further pointed out that the photo collection project on their web site, in which they were asking people to send photos of autistic people, compared the desired collection of photos to the Vietnam Memorial. I said that autistic people are not “victims” and that comparing us with war casualties would not be appreciated. In the brief correspondence that ensued, I did raise the question (and remember, this was *months* ago, when they would have had ample time to act on the suggestion if they had chosen to) of whether the rally’s goals and message might be reconsidered to be more in line with the goals of autistic advocacy. The responses I received indicated that my correspondent was not really grasping what I was saying, and was more interested in persuading me that the existing approach was really all right than in considering any possibility of change. At some point, being too busy and overwhelmed with potentially productive activities to continue with [figurative] head-banging against a [figurative] brick wall, I allowed the correspondence to lapse.

The other day I looked at Muskie’s site, and at her correspondence with a rally organizer. Again, I have no idea whether the person Muskie was writing to is the same person I corresponded with. Whether it’s the same person or not, clearly the concerns and issues I raised all those months ago never received any serious discussion or consideration, and still are not receiving serious discussion and consideration now when Muskie is raising them again.

These people are trying to sidestep the issue by claiming that their only goal is to “raise awareness” about autism. But it seems to me that any time you deliberately set out to raise awareness of something, there’s inevitably *some* slant to the awareness you’re trying to raise. What is the content of the “awareness” this rally is trying to raise? The simple *number* of autistic people in the country? Or the need for “someone” to “do something” for/about/on behalf of this number of people? What do they want people to learn about autism from their rally–how do they describe the defining characteristics of autism? What do they want people to do in response to the awareness they hope to raise?

I could go on and on, but I don’t have time, and I think I’ve made my point. The issue now is, what, if anything, should we as a community do about the “awareness” these rally organizers are raising? I applaud Muskie’s work. I want to help in Muskie’s work. I’m just not sure an online counter-rally will have much of an effect on “awareness” of the public at large. So, what else is there?
-Jim Sinclair, Autism Network International

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