Wednesday, March 29, 2006

Ageism and Disability Discrimination

Ageism is basically discriminating against someone because of their age.
The most common way ageism is described is as discrimination against old people. This overlaps with disability discrimination because old people are frequently disabled, the ordinary age-related skill loss is treated as disabilities, and so on. Old people are the age group where disability is normal (and I use normal in a statistical sense). And the same sort of stuff with institutions and viewing them as a burden and so forth occurs. I've heard some people say they'd like to die of a heart attack in late-middle age so they don't lose their "dignity".
But another, less described, form of ageism exists. This one is, in my opinion, more pervasive. That's why it's less described, it's just taken for granted. What I'm talking about is discrimination against children.
This overlaps with disability in a different way. Children are less able than adults, have less power, are less listened to. They are dependent on being looked after. That matches a stereotypical view of disabled adults as well as the reality of many disabled adults.
Often disabled adults complain about being treated like children. The sing-songy voice and patronising manner, the casual dismissal of what they say. A few of them recognise how many children resent this treatment as well.
The sing-songy voice is appreciated by very young children, still figuring out language. Babies like that style of speech, and scientists have dubbed it "parentese". But many older children who are talked to that way resent it.
Patronising is when you are confident you know much more than them, so why bother actually listening? Adults in general do know more than children. However, that is not a good reason to dismiss their views, for because kids think differently, they have different isights, and more importantly, kids want to be listened to.
And kids notice things. When I was eleven or so, I was lugging a big heavy tuba with no case while we ran for the bus. My brother, then about 3 or so, was the only who noticed the tuba's mouthpiece fall off. He tried to tell us something had fallen off, but we ignored him. I got in trouble with the school I'd borrowed my tuba from for that.
Children are certainly not miniature adults. But you don't have to be just like the average adult to be treated with respect, though our society thinks so. In some way, though kids are discriminated against, it's not as bad as with disabled people, because kids are future adults. It's expected that a child will become an adult. Disability is usually lifelong.
There's also how teenagers are stereotyped, as irresponsible troublemakers. Teens are different from adults, and on average are less concerned about long-term consequences and more concerned with peers and thrills, but a) not all teens are like that and b) that's not all bad.
I'd like it if being "treated like a child" stopped being a bad thing. Children and disabled people experience "discrimination by association" a form of discrimination where one discriminated-against group is compared to another. I think both children and disabled people should be viewed as different, and worthy of respect, with valuable opinions.

Monday, March 27, 2006

Locked Out of Advocacy

One day, my mother gave me $20 and told me to go buy myself a book. In the bookstore, I saw a book that caught my eye - Before and After Zachariah, by Fern Kupfer.
I wondered what was so important about this Zachariah person, that she divided her life by him. My guess was that he was a disabled kid, more specifically her disabled kid. I" picked up the book. My guess was correct.
My first sense that this book would not be pleasant to read was the blurbs of the cover. They claimed that this book was an example of why some kids really did need to be institutionalized. Being opposed to institutionalization, I figured that I'd disagree with the author.
I started reading it anyways, and decided to buy it and take it with me. When I got back to Mom, it turned out I'd misunderstood her - she had told me to bring her back much more change than I had, after buying the book.
I convinced her to let me read the book before returning it, and wrote down quotes from the book. It was a gruelling process. I kept wanting to scream at Fern Kupfer that her son Zach was a worthwhile person, not "damaged goods" (as she calls him in her introduction). But being in a hurry, I had to stuff my anger down and read.
This book has stuck in my mind since. I keep wondering about Fern Kupfer, wondering about how she was blinded by prejudice. She kept contradicting her own views without noticing. She noticed that Zach never cried if someone held him gently and cuddled him, yet claimed he cried for no reason. She noticed that he understood the word "light" yet claimed it was OK for his sister Gabi to yell insults at him because he wouldn't understand what she was saying.
Fern Kupfer shattered my innocent assumption that anyone who really got to know a profoundly developmentally delayed person would see how worthwhile they were. Here was a parent who didn't get it.
But one thing I've just realized now is how her view parallels many parents of autistics. And I realized the true tragedy of disability rights elitism.

"One day we saw a film on institutions and the handicapped. It was a scare show. Beds and beds and rows of bodies in beds. Semiclothed people nodding off in corners, sitting in wheelchairs that faced walls. In contrast, there were scenes that depicted just how much handicapped people could do if given proper training and the right chances. The end of the film showed a man in a wheelchair boarding a handicapped-accessible bus, going to his job as a computer programmer in a handicapped-accessible office. The message was that institutions were terrible, inhumane places in which to live. The message was that handicapped people can become more self-sufficient if society helps to provide the options. Fine. What was the matter? Why did the film leave such a bad taste in my mouth? I looked across the room at Gail. She must know, I thought, that Scott [her son] would never board a bus to go to work, no matter how many options he has. The film intimated, in a subtle and insidious way, that institutions themselves were the reason these people looked and behaved so bizarrely, that given proper therapy and programs all handicapped people could live productive lives."

There are many criticisms autistics and other disability rights activists could give. But I want to go to the heart of the matter. That film didn't show how people like Scott and Zach could be accepted and respected. It showed the success of people who weren't all that different from the majority and contrasted it with people who were very different. Fern Kupfer was right in saying that some disabled people won't ever fit the stereotype of the able disabled.
She knew that Zach couldn't fit that view, and instead picked the other. She institutionalized him when he was still very young. By the time she wrote the introduction to the book, when he was five years old, he'd been in the institution for quite awhile.
How does this parallel parents of autistics? Well, when a parent of a nonverbal, diaper wearing 8 year old hears that autism shouldn't be cured because autistics have X, Y and Z talents, and looks at her son, who doesn't have those talents, she's unlikely to decide not to try to cure him. She's likely to just dismiss those arguments.
Some people, when they see her dismiss these arguments, reply that her son could end up like the high functioning autistics opposing a cure. There are autistic adults who present as high functioning who started talking in their late teens. Autistic development is notoriously unpredictable.
But he might not. There are autistic adults who wear diapers and don't speak. If she is to hold out hope for a sudden developmental spurt, why not feel as though she's actively working to bring it on? She might notice the hypocrisy in their view that she musn't hope he becomes normal but is encouraged to hope he becomes high functioning autistic.
And the sad thing is that, although the basis for their arguments applies only to a certain group, the conclusion is just as applicable to the whole spectrum. The conclusion that you shouldn't institutionalize your child applies to people like Zach Kupfer as well as to people like the man boarding the bus. The conclusion that autism shouldn't be cured applies just as much to people like the nonverbal, diaper wearing 8 year old as to people like Temple Grandin.
This is because so often people reach conclusions like that instinctively, then grasp for explanations. And they miss the true reasons. You shouldn't institutionalize your child because they are a person and deserve a place in your community and your heart. You shouldn't cure autism because the autistic person is a person and deserves to be accepted for who they are.
But the sad thing is that when people challenge only some stereotypes but not others, only certain select groups are helped. Others are locked out of their view of diversity, their view of advocacy. It doesn't really matter whether the person will ever fit their view of diversity, what matters is whether the ones with power over that person think they ever will. That's what locks them out as exceptions.
It's not always that way. I wonder what Fern Kupfer would've done had she read Does She Know She's There? instead of watching that movie. The author of that book, Nicola Schaefer, kept her daughter Cath home when everyone advised her to intitutionalize Cath. Cath is not exactly like Zach, but similar enough that her story presents a view of how a person like Zach or Cath or Scott can be part of the community, can be truly loved and accepted.
And I wonder what many of those parents of autistics would do if instead of constantly hearing about Einstein having been autistic and how people like Temple Grandin don't want to be cured, they heard things about people like Amanda Baggs not wanting a cure. If rather than training parents to ignore disability and focus on talents, we showed how disabled people don't need to fit the stereotype of the able disabled (Amanda Baggs only fits the stereotype I made based off of her).
Yes, there are people who do that, but not enough. Too often we're drowned out by others. One problem is that since our arguments reach the same conclusion, people assume we're the same. When I went onto the Evidence of Harm listserv and expressed my view, I got a private message from a bitter parent of a low functioning autistic who said that she'd be willing to listen if someone showed her an argument that took LFAs into account. I did, but she'd missed that.
Another important note is that sometimes people have already made choices that the view they oppose says are wrong. Chances are that kid already had gotten attempts to cure xyr autism from xyr mother. Parents are stereotyped too, as either perfect parents or horrible parents. So when someone tries to criticise them, too often they assume they're being called horrible parents.
Our society needs to acknowledge that parents can make mistakes and still be good parents. My parents made several mistakes that wounded me deeply, the biggest being that the let my cousins become my foster siblings. But they meant well. They didn't want me to be sexually abused by them. Most people seem to be able to understand that a parent who lets an abuser have access to their child because they don't know that person is an abuser shouldn't be blamed for it. But it is also true that a parent who chooses a damaging goal for their child without realizing it is damaging is also not to be blamed. For the most part my parents accepted me for who I was, but they tried to force me to eat food I couldn't bear the taste of. That was a mistake, and was damaging to me (I still feel shame about my picky eating) and they certainly knew they were trying to force me to eat those foods, but their intention was to help me, not hurt me. Our society needs to understand how a caring parent can make a mistake that harms their child and still be a caring parent.

Pro-fester Group

Amanda Baggs recently posted A Long Delayed Reply to the Scafer Autism Report. Which reminded me that I never actually finished writing my reply.
Lenny Schafer called autistic rights activists the "pro-fester" group. But in my opinion, the "pro-fester" group are those who discourage oppressed people from achieving. Malcolm X's teacher, who discouraged him from being a lawyer and told him to be a carpenter instead. The myriad of doctors who, even now, advocate institutionalization from infancy for developmentally disabled people, citing a stereotype that they will die young and/or achieve little. The people who now encourage women to abort, citing the same stereotype.
Neither we nor curebies like Lenny Schafer are part of the pro-fester group. We both want to help autistics achieve their dreams. The difference is that curebies are stuck in narrow definitions of what constitutes achievement and how one should achieve.
I think there are so many ways of helping people other than helping them conform. I want to help people find acceptance and self-respect, and keep them from losing it in the first place. I want people like me to stop feeling like human garbage or like only their ability to do X, Y or Z prevents them from feeling that way.
I also want that for NTs, like Gabi Kupfer, sister of profoundly delayed Zach, who is quoted in the book Before And After Zachariah as asking her mother the terrified question "Mommy, what if I'm developmentally delayed?" because she was having trouble tying her shoes. Gabi had already learnt the awful lesson that her mother's love was conditional on her ability to conform to expectations of her. Though that lesson is especially painful for disabled people, most people who've internalized that lesson end up feeling that fear, that panicked question "what if I'm not the kind of person society considers acceptable?"
Curebies' solution is to eradicate difference, to make everyone fit that mold. Some people, such as the authors of books like The Difficult Child, They Say You're Crazy and The Highly Sensitive Child, want to widen the boundaries of acceptability only just enough to accomodate their select group, be it "difficult" children, highly sensitive people or people diagnosed with mild "mental illnesses" like depression or anxiety disorders.
I'm not like either of those (although some autistics are). I want to stop saying "you are acceptable if you fit our standards" and start saying "you are acceptable". No "if". I think everyone is beautiful in their own way. That's the meaning of the title of this blog. Abnormality is part of diversity, and diversity is beautiful.
Of course, if a person needs treatment for some condition that is inherently (ie, not indirectly through discrimination, internal or external) painful or deadly, they should get it. I'm in favor of curing the lung problems of cystic fibrosis, or the Hirschsprung's disease people with Mowat-Wilson Syndrome have. In the second example, they also have an assortment of differences that should be accepted, not eradicated, such as developmental delays and intersexing.

Friday, March 17, 2006

Being an Ally as Well as a Self-Advocate

I'm writing a book titled Normal Person's Burden, about disability rights. In one chapter, Disabilities and Parenting, I was describing parent allies and quoted a list of "what makes a good ally" that was originally posted by a Domestic Assault Prevention group regarding men, and then modified by Phil Schwarz and used in his conference presentation Indentifying, Educating and Empowering Allies.
As I was quoting this list, I realized that, as a "high functioning" autistic (although the line is blurry, since I'm in between Asperger Syndrome and BAP* I'm definately high functioning) I used those same principles in terms of advocating for "low functioning" autistics (those who are treated by society significantly worse than people like me are because they're more prominently autistic).
Which got me pondering. Generally, the difference between an ally and a self-advocate is that a self-advocate is the target of the kinds of discrimination they are fighting against, whereas an ally isn't. In my case, I've been the target of some of the discrimination I fight, but some aspects of the discrimination I fight are expressly stated not to apply to people like me. I've never been institutionalized, and probably won't ever be, although my flashbacks mean I may be seen as needing institutionalization if it's really bad. If need be, I can pass for normal in most situations, though in group conversations I have to pick between "shy" and "overtalkative". I've never been viewed as unable to speak for myself, except in the same ways NT** kids are. My self-care skills are only mildly impaired, so that with maybe a beeping watch or some more ingrained rituals I should be able to live "independently" with no support staff or government funding (other than maybe student loans and other stuff NTs also get) at some point in my 20s.
All of that means that my experience of disability discrimination is significantly different from that of people such as Amanda Baggs and Cal Montgomery, in the same sort of way that the experience of racism is different between a light-skinned black person who can pass for white and a dark-skinned black person who can't. Which means that in advocating for autistics in general, I am both a self-advocate and an ally/pseudoally.
Laura Tisoncik and Amanda Baggs discussed how never-institutionalized autistics don't understand institutions in their article Conversation on Institutions. From my perspective, reading that, it was similar to how I imagine an NT ally would feel reading about many aspects of discimination against autistics. Basically, I had to recognize that this was an experience I didn't understand, and be willing to listen. All that ally-type stuff. My printout of that article has a note jotted down about whether someone with PTSD*** due to some trauma other than institutionalization would get it if they were staff in an institution. I realize the answer is probably not, though they may grasp some things like hypervigilence if they are open-minded.
Anyway, what I'm trying to say is that I think it's possible to be both a self-advocate and an ally in the same movement, and presumably also possible to be both a self-advocate and a pseudoally. For example, people like Temple Grandin are held up as speaking for all autistics, yet Temple Grandin, for the same reasons as myself, doesn't understand what it's like for "low functioning" autistics.
Anyway, food for thought. I'd like more discussion of this concept.
* BAP - broader autistic phenotype, meaning they have autistic traits but not enough to be considered disabled.
** NT - neurotypical, meaning a person who has brain function close enough to average that society accomodates their kind of mind fairly well.
*** PTSD - post-traumatic stress disorder, a psychiatric diagnosis applied to people who, after a traumatic event, have symptoms such as being easily startled and irritable, re-experiencing emotions or sensations from the trauma, feeling emotionally numb, etc, to a point where it is seriously upsetting and/or interferes with their ability to function.
PS: I'm using "low functioning" mostly as a sociological category, to refer to the autistic people who are targets of certain types of discrimination I (and Temple Grandin, and others) am not a target of.

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Monday, March 13, 2006

The links on the side

You may notice that I now have three disability related links. Here's why I chose them, as well as some related ones: has the tagline "The REAL Voice of Autism". This is in response to some curebie organization calling themselves the voice of autism when if they have any autistics speaking, they're just tokens.
They have a compilation of writing by autistics, including most of Amanda Bagg's writing. Incidentally, Amanda Baggs has a blog at, on this same website. They also have some good links, but unfortunately after a server failure they lost most of them. Some they've gotten back, however.
One thing they link to is a great page called, which starts out seeming like most curebie websites, describing a low functioning autistic woman, but it turns out the autistic woman is the author of the website and she describes how she wants to be viewed.

Next, there's the Lissencephaly Network. Lissencephaly is a condition where the brain is smoother than in most people. Lissen means smooth I think, and cephaly is definately brain/head. Because of a smooth brain, lissencephalic people are profoundly delayed and have various other disabilities including CP and seizures. Much more info about that at the Lissencephaly Network.
But why, out of all the websites I see about various rare disabilities, did I link to that one? Because they view lissencephalic people, part of that group so often rejected and dismissed and discriminated against, as worthwhile. For examples, in the articles section there's a section titled "you just don't get it!" which shows to me that these parents do get it. They view their kids as worthwhile. I especially like the one titled "No Trades Allowed".
Which reminds me of a book I want to read but haven't got the chance yet. This book is First Contact: Charting Inner Space, by David Hingsberger, available at Diverse City Press. In this book he talks about the value of profoundly developmentally delayed people. I first heard of it from Amanda Bagg's article The Meaning of Self-Advocacy, in which she quotes that book. My favorite line from that quote is "For those labeled "profoundly retarded," emphasize the word "profound.""

Next is It's a good website, but not as important to me as the other two. But now that Ooops! Wrong Planet seems to be gone, it's the one I know of with the largest link collection. It's also one that was much more important to me in earlier times, and it's where I learnt about ("pathological") demand avoidance, which has helped me understand some aspects of my behavior. Although I think my own "can't help the won't" is trauma related, I probably am neurologically similar to demand avoidance people, and certainly my outward behavior has been similar at times. Which reminds me of the PDA Contact Group, which is not much different from most little parent-run support groups for rare or newly described syndromes. But which I'm eventually planning to post on their forum about my own "can't help the won't". And by the way, "can't help the won't" is a phrase applied to demand avoidance, that it's not that they can't do it, nor that they are simply defiant, but that they can't help refusing to do it. I'm like that some of the time, and it seems to be related to feeling triggered. My current theory about it is that I was pressured into cooperating while being sexually abused. Similar to deciding to hold in my feelings to prevent conflict with teachers when I entered my second school, when the abuse stopped I think I decided to never, ever give in like that again. So it ended up where if I'm amenable to a demand I'll do it, but if I'm not, I either procrastinate or refuse, if I refuse, the person demanding it pressures me, this reminds me of my abusers pressuring me, I get triggered, and at that point I am restricted by a number of emotional rules, especially not giving in, but when it gets really bad exposure anxiety type stuff comes up where I can't say clearly what is going on for me, I must hint at it. Once I was dissociated and Mom kept asking me what was going on for me and I was trying to tell her what was going on without being allowed to say "dissociated", for example. In terms of procrastination, sometimes I become willing to do it, more commonly it eventually reaches the point where I outright refuse and the process goes on from there.

Yet another tangential post. Had it not been tangential, however, it would've been much less interesting.

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Monday, March 06, 2006

Discrediting personal accounts

Today Mom brought me to a presentation by Sue Campbell, author of Relational Memories(?). She was talking about the False Memory Syndrome Foundation and so forth from a feminist perspective, about the way personal accounts are discredited by attacking memory. Which got me thinking about wider ways of viewing this.
It's my impression that many people, when reading a personal account that challenges their stereotypes, react one of two ways to each stereotype challenge.
One way is to go "Oh, wow! I never knew that!" and incorporate that into their view. An example is how many curebies reacted to Temple Grandin describing picture thinking.
A second way is to reject it and try to discredit the personal account. In terms of recovered (or any kind) of memories of abuse, often they suggest the person has a false memory. But there are myriad of ways to discredit personal accounts. One way is to claim that the account isn't from who it's supposed to be from - eg facilitator influence. Another way is to say that the person is an exception and therefore their personal account is irrelevant to other people's lives - eg "you're so high functioning, we're not trying to cure high functioning people, we're trying to cure low functioning people" or "you were misdiagnosed". Another way is to agree that the events happened and are representative of many people's lives, but that the person misinterpreted them - eg "you're delusional, talking in a high-pitched parentese voice doesn't really mean we're infantilizing you". Sometimes they connect this with the person's diagnosis, such as saying a psychiatric survivor is "too crazy" to know what they're talking about. Sometimes they simply ignore or misinterpret the communication - eg a person who is throwing tantrums to protest how they're being treated is viewed as "regressing" or "displaying maladaptive behavior" (whether it's "adaptive" is irrelevant, what's relevant is why they're doing it). Sometimes they use several at once, even contradicting themselves - "you're too high functioning to represent real autistics, but you're mindblind and don't understand what's really going on in social interaction and your facilitator is the one who's really typing that."
So what makes the difference? It's how invested they are in their model of reality.
For example, the False Memory Syndrome Foundation is run by parents of people (mostly women, it seems) who recovered memories of childhood abuse. They don't want to be viewed as abusers, so they discredit the voices of their offspring.
A person may be invested in viewing low functioning autistics as "retarded" based on thinking that what they're doing is OK to do to "retarded" people, but if a seemingly "retarded" person turns out to be highly gifted they don't want to accept the obvious conclusion that other "retarded" people might also be smart.
A person may be making money off of therapy and not want to listen to people saying that therapy damaged them (or their child, look at CIBRA, which has been attacked by ABA therapists).
In terms of FC, two things that concern many people are a) the very fact such people can type so well, and b) what they say about their experience (especially sexual abuse accounts).