Letter to a Nonexistant Senator

Rettdevil has a blog entry Combating the Combating Autism Act. I read it through, down to the link where she has a form to help people write letters lobbying against the Combating Autism Act, wrote my letter, then realized that you're supposed to be a US citizen to speak out about US laws. I'm Canadian. So, instead, I'm posting my letter here:

I urge you to not support S. 843, the Combating Autism Act of 2005, when it comes before the U.S. Senate in the coming weeks. This legislation, while it is important in awareness, is not conducive to supporting the individual with autism. Instead, it would likely lead to glorified genocide, under the guise of being good for the society, with the added bonus of maybe helping the person.
Autism is a complex developmental disability that affects an individual in the areas of social interaction, play and communication. Children and adults with autism are often unable to communicate, have differences in social interaction, are interested in different things (one kid might like cochroaches, another might have an enduring love of elevators). Autistic people are different even in how their minds work. Many autistics have described cognitive differences such as tangentiality, spatial or picture thinking, and other differences. Also, there are emotional differences. Apart from different interests, autistics may be less easily lonely, less interested in sexual activity, or less concerned with fitting in.
Autistics are people with the right to exist. Would you want to have a personality transplant and be told it was because you were not acceptable before when all is said and done? Would you like it if you knew that people were getting abortions to prevent children like you? Anya Souza, a self-advocate with Down Syndrome, certainly doesn't. She and her supporters once attended a conference about prenatal screening in order to protest the fact that 90% of prenatally diagnosed Down Syndrome infants are aborted. You can read about that here: http://www.mouthmag.com/issues/78/30_souza.html
The Combating Autism Act is a critical piece of legislation that authorizes more than $1 billion in federal funding for autism related research, early detection, and intervention, but does absolutely nothing for awareness in American Society. A revised plan of action for this legislation needs to be made in order for it to benefit the autistics currently in society, instead of merely being a tool of those seeking to eradicate them. By curing autism, there would be a loss of an abundance of creative and unique individuals that contribute to the greater good of society, each in their own ways. Instead, we need legislation that affirms that there are many ways of being a valuable person.
We, the autistic people, their families and friends, beg you to reconsider supporting this act if you already do so. If some species of fox is endangered, they are not expected to prove their worth for people to lobby to protect them. Why is it that certain varieties of human beings are required to prove their value in order to continue existing?
Thank you for your consideration of this request.
Sincerely,_________ _______

How 'Autism Every Day' Affected Me

I've been trying to work up courage to write about this for a few days.
When I wrote my entry Autism Every Day, I found that I was only mildly upset by the stuff said in that video. Mostly, I analyzed it intellectually. Then it was time to go home, so I wrote 'to be continued' and left.
On the way home, I was irritable with my brother. This progressed, so that by the time I was home I had argued with my mother and brother and decided they both hated me. When we went in I immediately went to talk to my Dad, since I neede comforting and he was the only one I hadn't fought with. I told him I thought I was upset because of that movie, but Mom came and I shut up. Dad got upset that I'd suddenly stopped talking, and kept trying to get me to talk, but when I'm in that state I can only discuss my feelings if I feel safe, and I was convinced Mom hated me.
Mom left and I tried to explain to Dad why I'd stopped talking. It took some work but finally he understood. Then he and I talked about what was upsetting me. Mom went to bed, while my brother, desperate for Dad's attention, kept popping in and getting sent back downstairs to wait. After awhile my focus shifted to the fact that it was bedtime, and I doubted I'd be able to fall asleep alone, considering how anxious I was.
At this point I tried to make it up with Mom. Finally, we both apologized for taking out our stresses (Mom is writing a thesis and working very hard) on each other, and I felt safe to cuddle with Mom. I fell asleep in bed with my parents. Several hours later, I was told to go to my own bed, since I was now feeling much calmer, I could sleep alone.
As far as my meltdowns go, this was mild. In fact, Dad doesn't consider it a meltdown. But it could easily have been worse. Had Dad at some point said or done something that led me to think he was against me, I'd have had no one to comfort me and probably would've ended up screaming at them for ages, running off, punching/biting my wrist to leave a bruise, or some combination of both.
When I decided to write the entry about Autism Every Day, I expected there might be trouble. But I never expected it to hit me afterwards, rather than as I was writing. On other occasions I've started crying, or gotten triggered, or otherwise reacted strongly in an unpleasant way while writing something upsetting. For example, the reason my article The Difference Between Pedophilia and Homosexuality is unfinished is that I started having body memories partway through. Amanda Baggs described something similar in her article This Is What Your "Treatments" Do To Us, although she has it much worse than me.
I wonder if partly it's that I didn't describe my own emotions or the emotions of people I strongly identify with very much. Partly, it's obviously that that movie was so much more awful than any other curebie autism movie I've seen. The time I wrote a reply to someone posting the link Recovered Autistic Children, I found it less upsetting, because those movies are less vicious (at least the ones I saw). There was less of the feeling of a tide of hate washing over me as I struggle to stay upright. I described this feeling somewhat in my entry Drowning in Discrimination.
Once again, I think of how ridiculous it is to believe that autistic rights activists are just doing it to feel important. Often when I write about discrimination, I get only hints of emotional reactions, unless I call up my emotions to write about. What hints I do get, however, are not pleasant emotions, more like anger or sadness or terror or just plain exhaustion (which was mostly how I felt when I wrote Drowning in Discrimination). And I certainly don't enjoy getting triggered by these things and having meltdowns. Nor do I enjoy people's reactions.
But it's worse to think that kids are suffereing from similar kind of stuff as what harmed me, and people think it doesn't hurt or that we deserve it because we're autistic. I could pretend to myself that it's fine, but I made a commitment to being nondiscriminatory, so once I realize it's discrimination, I won't disguise it to myself anymore. Not to mean that I'm never discriminatory, because I'm sure I practice various forms of covert discrimination without realizing it.
I'm not sure when I decided this. Maybe it was because my parents raised me to be aware of discrimination. My parents have always said that discriminating against people for gender, sexuality or race is wrong, and my Mom's theses are pretty much all about sexism (and history, and sometimes law). They raised me to be aware of discrimination, and concerned by it.
Maybe it's my schools. I learnt in my first school to fight back when someone tries to force you to conform to unfair standards, and in my second school I learnt that normal is definately not perfect. I learnt these things by getting repeatedly wounded emotionally, and by the support my parents gave me as I fought back.
And as often occurs, my entry wandered along many tangents, and I wrote down stuff I hadn't planned on writing. Such is the beauty of my autistic mind.
Ettina

Autism Every Day

[Note: this is the second post today.]
This is my response to the movie "Autism Every Day", at Autism Speaks(I hate that name, because it's run by NTs, so it's not autistics speaking).
First they show a number of clips of kids having meltdowns. That's a bad sign. I've met many autistic kids, and only seen meltdowns twice. It is by far a typical way for autistics to behave. But kids having meltdowns look miserable and hard to cope with, and that's the image I think they want to portray of autism. Miserable children who are hard for parents to cope with.
Oh, and at the end of all these clips of meltdowns, the picture of the last kid goes still and the word "autism" appears. The implication seems to be that this is autism. But it is only one facet, just as toddler tantrums are only one facet of NT toddlerhood, or teenagers claiming their parents are ruining their life is only one facet of NT teenhood.
They have a parent describing what a burden her daughter is, while holding her daughter, who seems to really want her mother's attention. If that girl, like many autistics, is understanding much of what is said around her, how will this litany of ways in which she's burdensome affect her?

"Everything about Daniel's life that seems normal for a typical kid, like going out for dinner, or going to a park, all that, for us, is work."

So says one mother, while trying to stop her son satimming with one hand. One thing I don't like is how this movie so far has shown no sign of analyzing why the children are in those situations. Rather, they just use it as a "look how awful autism is" pity-producing thing. With regards to that quote, I say three things.
Firstly, it's work to do that with NTs, too. I've babysat my brother, eight years younger. I had to make sure he had something to do, so he wouldn't get bored, or he'd start doing annoying things. His only neurological difference is that he's incredibly smart.
Secondly, assuming Daniel is harder to deal with on outings than most people. Why? The answer isn't "autism", it's an interaction of his various traits, some of them more common among autistics, and the environment he's in. Maybe he gets overwhelmed and has a meltdown. Or, judging from how his mom was trying to stop him from stimming, it's possible he either stims more due to overwhelmsion or she's more sensitive to it because of the desire to conform, and so they get into a struggle about whether or not he stims, which could culminate in a meltdown. Maybe he wants to play one way at the park and she insists he play a different way. Maybe he wants his routine and outings form a disruption to that. Maybe he's so excited by being out that he becomes hyperactive, or stims out of excitement (when excited, I jump up and down, squealing and flapping). Maybe he'sa just fine with it, but has no sense of danger, and needs more supervision when he's not in his safety-proofed house. They simply don't say.
Lastly, she phrased it in quite absolute terms. Everything that seems typical is a struggle. There is a known tendency for people to colour an entire experience by a few incidents that stand out mentally. Especially if they are encouraged to view it that way. On Amanda Bagg's blog, she quotes someone who described how the movie was made:

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work."

In other words, it was deliberately staged to show the worst stuff. A parent involved in that kind of movie would tend to start thinking the worst about their kid, unless they rebelled. And on a larger level, much of the mainstream autism community encourages the parents to view it in the worst light. I bought some books published by the Saskatchewan Assoiciation for Community Living, stories by parents, siblings and self-advocates. In the parents and siblings ones(few of the self-advocates mentioned their diagnosis), I noticed that most of the descriptions were quite accepting of the individuals for who they were, but a few focused heavily on what they were doing to try to "cure" their child. All of those few were about autistic people.
Oh, they show the five-year getting his diaper changed, as well as a kid being held down to get his teeth brushed. Well, the webmaster of Getting The Truth Out said, regarding a similar film:

"Getting the Word Out has a video of a mother complaining pitifully about her children needing diapers until they were five. She seemed to think this was a horrible thing for her to endure.
I'm in my twenties, I often can't process or respond to bowel or bladder sensations rapidly enough to get to the toilet, and I'm not ashamed or embarrassed by going into the store to buy diapers. That's why they have such a large adult diaper section is because someone needs them."

That kid has the same air of putting up with it that I see in babies and toddlers. It's not a big deal, just a minor nuisance. The same way I feel about using the toilet, in fact. It's a brief interruption of one's activities, but momentarily you can get back to whatever you were doing.
Now, what I think is bad is using that kid, in what should be a private activity involving him and his mother, or whoever is changing him on that occasion, and putting it on TV. Would they tape a typical five year old on the toilet?

"I have to stay home with him, because I have to facilitate the therapist, going here, going there, the medications, the constant medical appointments..."

You don't have to do all that. You could just accept that he's not the kind of child you expected to have, and love him as he is. You don't have to give him therapies and medications and medical appointments. Autism is not life-threatening, or painful. I think the frenzy to cure the child must be incredibly stressful, but then it's blamed on the child's differences.

"I really had to give up my entire life as I knew it."

Firstly, every parent experiences a major change in their lifestyle when they have their first child, and again with any siblings.
Secondly, not every aspect of your life is affected, with any child.
Thirdly, note she said "give up" rather than change. That implies she has no life now. But she does. And if she approached her new life the right way, she could really enjoy herself. It reminds me of how Heller Syndrome is portrayed as "losing a child", but in reality, you've both lost and gained a child.

"Your heart is breaking, all day long."

Sounds like they need counseling. It's not autism that causes that, but being stuck in the despair stage of grieving. They need to work through their lost dreams, and accept thewir child. Then they'll move beyond that.
By the way, one problem I see with the mainstream autism organizations like Autism Speaks (hate that name) is that they encourage parents to get stuck in grief rather than moving on. They portray it as unending misery, and a battle, and all sorts of viewpoints that form a barrier to dealing with grief, and in fact may induce grief in parents who otherwise wouldn't grieve.

To be continued.

Step Forward Or Step Back

There's a poem that circulates around communities for parents of disabled kids. A copy of it is available at the end of the story of a boy named Zachary, here. It's supposed to be wonderful, heartwarming poem about disabled kids. But it makes me uncomfortable.
It's all about the "gifts" a disabled child brings. But it seems to me that many of those "gifts" are actually expression of prejudice. For example:

"I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children.There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.I am the child who cannot walk."

In other words, the "gift" a physically disabled child brings is to make you aware of how you're so lucky you can walk and don't have to live life like that poor, pitiful thing (note the dehumanising effect of pity).
I discussed this with my Dad. He said that it's good for people to be glad about their abilities. I agree, but not when it takes the form of viewing yourself as "better", in some way, because you can do x. Maybe that kind of competition helps the walking person, but it doesn't help the non-walking person.
One thing that made me wonder is that he says "at least it's a step forward". But is it really? I think of it more like a wrong turn. I don't think it brings you any closer to accepting diversity to value yourself as better because you can walk, or talk, or whatever. Taking those skills for granted isn't good either, because you tend to assume everyone can do what you can do.
Ettina

Making Up For Difference

In the book In: Difference (available at Diverse City Press), Astra Milberg has an article about preventing disabled people.Astra Milberg is a woman with Down Syndrome. Her article is called Of Mice And "When".
She doesn't want people like her to be prevented. I agree. But how she argues this viewpoint makes me uncomfortable. She says:

"I am one of the people that doctors have decided shouldn't be allowed to be born because they think I'm not smart. Well, I want to tell them that there are lots of ways of being smart. They may be swmart with numbers, with books and with test tubes. But I am smart with people. I am smart enough to know right from wrong."

I have no doubt she has those qualities, and that they are good qualities to have. But it seems to me that she is not challenging the underlying assumptions. Our society seems to believe that difference is bad. I've often seen minority people respond by pointing out the advantages of their difference, as Astra is doing. It seems to me like in order for a difference to be accepted, it must be proved to bring with it some kind of advantage. There is a well known folk song sung at Christmas, called Rudolf the Red Nosed Reindeer. I'm sure most people know the story, but I'll repeat it anyway.
Most reindeer have black noses, but Rudolf's nose, as the title suggests, is bright red. In fact, it's so bright, it literally glows. For the "crime" of being different, Rudolf is ostracised and bullied. Then, Santa realizes that Rudolf's nose can help him travel through the fog. Rudolf is instantly popular.
I used to really like that story. But now, it gives me the same uncomfortable feeling as Astra's words. Why is that?
Rudolf's nose could be accepted because it had an advantage. But there's nothing wrong with a reindeer having a red nose, any more than there's something wrong with one having a black nose. Yet the red nose has to be better in some way to be viewed as OK.
Lisa Jean Collins raised this issue in her blog entry Making a Case for the Boring Autistic, about how autistics are expected to show some special talent to prove their worth. She says:

"Many of us have bought into the notion that if your child is autistic, you had better highlight (if it is obvious) or scramble around looking for (if it is not) what they are good at—what they can do—as if to make an apology to society for the fact that they are autistic."

Exactly. Certainly, that attitude is better than writing them off entirely. But it has two major problems with it. Firstly, the problem many have raised - what about those who don't have some kind of "compensation" for their difference? Lisa describes "boring autistics" - in other words, autistics who don't have the kind of talents viewed as part of autism. The equivalent for Rudolf would be a reindeer with a non-glowing colored nose. For Astra it might be an autistic person with Down Syndrome, or one with conduct disorder.
But there is a more fundamental problem with this attitude. If we leave the underlying idea that difference is bad unchallenged, and merely say "well, this difference has advantages", then each different group will have to fight the same battle over again.
And I doubt we'll ever run out of differences to be denigrated. After all, besides the variety in humans, there are other species on this planet. There may even be other planets with life on them, and the science fiction assumption that aliens will be basically humans with pointy ears or knobbly foreheads is a naive assumption. Not only will aliens, if we ever meet any, be very different in physical structure, their minds will be very different as well.
Ettina

Able Disabled and Unable Disabled

I found a post on a list about chromosomal trisomies. The subject was Predicting Outcome - long and as the title suggests, it was a very long post. It's archived in that list's archives, available to the public.
The post is about the perceived differences between mosaic and full trisomy (particularly trisomy 18). It's by Karen, a mother of a boy with mosaic trisomy 18, who talks about all the nasty stuff she's gotten from various people because her son's trisomy is mosaic instead of full. As I read it, I was struck by the parallels between how high functioning and low functioning autism is portrayed.
The post is in response to another woman saying that when she was pregnant she was told mosaic trisomy could be "just as bad or worse" than full trisomy, and later, after the child was born "she is doing so well because she is mosaic".
One of the first things Karen says is that despite the stereotypes, both mosaic and full trisomy kids are very variable. For example:

"I look at the mosaicers on the list, and others that I have met and the variability never ceases to amaze me - and there is no rhyme or reason to any of it. But then I look at the "fulls" and feel the same."

Unlike the division between high functioning and low functioning autistic, the division between mosaic and full trisomy is determined by a medical test. But in both cases, one characteristic is assumed to indicate all sorts of other characteristics, when in fact it doesn't. Definitions of low/high functioning autism vary. If you define it by speech, pretty much every other skill varies between both. Same if you define it by self-care, whether or not they "regressed", whether or not they self-injure, or any other trait.
Karen also describes how doctors often look at her son and see a "great kid", but don't see all the struggles he has. High functioning autism is viewed the same way. An autistic who can speak well is often assumed to have no difficulty communicating, looking after themselves, holding down a job, or anything except for reading nonverbal signals. And autistics who type well on the internet are often assumed, by people who've never met them in person, to be high functioning in all their other skills, if they're even autistic.
Karen also describes how once a person on the list asked about development in trisomy kids, and she described when her son learnt to do various things, and was told she shouldn't discuss her son's development because he was mosaic. Countless times I've been told, or seen others get told, that their experience as an autistic person doesn't matter because they're "high functioning". Granted, sometimes there's a true difference, both in terms of mosaic/full and high/low functioning autism. But a) sometimes the difference is not as great as it's believed to be, and b) everyone's experience counts, even if it's unusual.
And there's more parallels. Basically, this post is to point out the truth of the statement "same struggle, different difference" in yet another circumstance. It seems that there are two disability stereotypes, the "able disabled" (high functioning autistic, mosaic trisomy) and the "unable disabled" (low functioning autistic, full trisomy) and in fact, the truth of what the person is like lies somewhere in between. In Critic of the Dawn, Cal Montgomery names the "able" version of her Mary, and the "unable" version Bruce. She says:

"I choose not to emulate or to repudiate either of my phantom relatives. That decision reflects my understanding that there are those whose lives are dominated, with or without their consent, by phantoms much like Bruce or much like Mary. It reflects my conviction that the representations of disability that give Mary and Bruce detailed life are less than reality, are both more and less than truth, that I am being asked to choose between two stereotypes, not two realities. It reflects the heritage I claim as mine, the community, the communities, to which I believe I am responsible."

Ettina