Tuesday, October 14, 2008

What I Saw Today

Later this month, my mother is (with my assistance) presenting a conference paper about the 'war on autism' metaphor. It's a very important topic, and for the most part I've enjoyed helping her prepare her conference paper. But today...
Today, my mother said she wanted several pictures from the Autism Every Day video. Because she doesn't understand computers very well, I volunteered to get the pictures for her. And to do that, I had to watch large chunks of the video. And you know what I saw?
I saw a child kiss her mother, as her mother complains about her 'always wanting attention'. I saw that same child later being prompted to say 'I love you' - the mother would rather her say a meaningless prompted phrase than spontaneously show her love. I saw that same girl come up to her mother when she was talking about something upsetting and say 'what are you doing?' in a dismayed tone, then walk over to look out of the window as her mother talks about contemplating murder/suicide in preferance to a bad school placement (I've been in bad school placements, and they're not pleasant. But they're not worth dying over.) I saw a child being filmed having his diaper changed, and his mother commenting about how much she hopes he'll be toilet trained soon. I saw a kid trying to engage his mother in interactive stimming, and her saying 'no' and indicating he shouldn't stim. I saw parents pinning their only hopes on a slim chance of a cure, rather than learning to live with a different kind of child. I saw the stark dichotomy between kids being kids and parents talking tragedy.
And my reaction was the same as it was when my teachers treated me unfairly, when my classmates in a new school rejected me for no apparent reason, when people in various extracurricular programs expelled me or told my parents to take extra measures to 'control my behavior' in those programs. Why don't they like me?
Some people think this is just parents expressing their feelings, to raise awareness in order to help their children and others like them. That's not what this is. This is hate. Oh, sure, they 'love their children' - they don't really. Not in the ways that matter. You don't treat people you love like that. If they were talking about neurotypical kids like that, very few people would consider them loving parents.
Autistic people are supposed to 'lack empathy'. OK, if you guys have empathy and we don't, prove it. Watch that video, and imagine they're talking about you. Imagine your parents saying things like that about you, or watching someone else say those things about traits their kid shares with you. If you're part of another group that is discriminated against, imagine watching people say things like that about your group in the presence of children of that group. Imagine fathers talking about how they hope they can get a sex change operation that can make their daughter a boy (not because she is actually a boy inside, and has said so, but because they'd rather have a boy). Imagine white parents talking about thinking about doing a murder-suicide with their black child because the school system is segregated. Imagine straight parents talking despairingly about how their gay kid has had 'so much stolen from them', because, among other things, they'll never marry a girl and have kids with her.
Oh, you may think it's different, because autism is different. It isn't. Yes, we can't do many things neurotypicals can. But our worth, our happiness, does not hinge on that. It should not hinge on that. We deserve to have parents who love us, not their images of what we were supposed to be. We deserve to have parents who pay attention to our expressions of love for them, rather than demanding something artificial instead. We deserve to have parents who can talk about our futures without dread and tears, who can see a future where we remain ourselves and get treated with respect.
Luckily for me, I had that. But so many kids do not.

PS: I'm really upset right now, so I didn't phrase it nearly as diplomatically and carefully as I usually would. If you are a parent of an autistic kid and are offended by this, just think: your kid might someday write blogs like this. Try to make sure they can truthfully say the second-to-last sentence 'Luckily for me, I had that.' If you're thinking 'I just want my kid to be able to write like you can' and using that to justify all this, then remember - what's the point in teaching your child to communicate if you're not willing to listen?

Labels: , , , , ,

Sunday, August 17, 2008

A Different Kind of Autistic

I'm seriously thinking of quitting from autistic advocacy and going out on my own.

Not that I don't think it's OK to be autistic. But I'm not standard for an autistic person. Yes, I know there's a lot of variation, but the vast majority of autistic people have certain traits in common with each other that I don't have in common with them.

That, in itself, doesn't make me any less eager to be involved with autistic advocacy groups. I don't think there's anything wrong with the way I am, and I don't see anything wrong with the way most autistics are either. But some people seem to think recognizing I'm not like most autistics, and that there is a diagnostic category someone invented that describes me much better than just 'autistic' does, is something I should not do.

If they could give evidence why I'm not different from most autistics, I'd pay attention to it. On other occasions I've misunderstood descriptions of autistic traits and assumed I was different from people because of that. But they haven't commented at all on whether or not I am a different kind of autistic person. They've just attacked the only label I've found to describe people like me. They've just said I'm not supposed to define myself that way.

Why? Well, because it's Pathological Demand Avoidance. And 'pathological' is a bad thing (which is why I've renamed it Newson Syndrome, which they've completely ignored) and 'demand avoidance' is assumed by them to be - I don't know what, but something really offensive, rather than just 'avoiding demands' (which I actually do). And somehow saying I fit into this category is supposed to mean I think I'm pathological and bad.

And they don't even question the idea that PDA is a bad thing. They insist that description can't possibly be a neutral way of describing someone, even if you rename the condition. Somehow, the fact that autism was described just as negatively, if not more so, by Leo Kanner and yet they call themselves autistics doesn't seem to matter. It's OK for them, but not for me.

I finally found kids who sound just like I was when I was younger, and read descriptions of adults a lot like me. And because I tried to look for adults like me among the broader community of autistics, I get attacked. Why do they get to define themselves, but I don't? Why do they get to define my reality for me?

Labels: , , , ,

Wednesday, July 16, 2008

Tolerating Suffering

I found a manga called With the Light: Raising an Autistic Child. It's a great story, I highly recommend it. But in this entry, I'll talk about one of my least favorite parts of it.
The autistic boy in the story, Hikaru, entered school after a year of integrated preschool. He found it really hard to adjust to school. Although he adjusted after awhile, for months he was crying much of the time. People would comment on it all the time.
Another example is the following, gotten from here:

"Anna stopped smiling and laughing for the entire four years she was on Vigabatrin, but started smiling again within a week after we discontinued it. We eliminated it because of our concerns about possible vision loss"

Hikaru's mother, Sachiko, was portrayed as a very caring and understanding mother of her autistic son. I don't know much about Anna's father, but I assume he cares deeply about his daughter as well. But there seems to be a much greater tolerance for suffering of developmentally disabled children than other children. My mother even shows this. When I cry or self-injure, she doesn't get as concerned as someone who doesn't know me would get. (By the way, in case I haven't stressed this enough, these are good parents. My mother and Sachiko and presumably Anna's father are all good parents. That's part of the problem - even good people act this way.)
I'm not sure why there is this tolerance for suffering. Considering the kind of people who act this way, it's obviously not hate or uncaring. And it's unlikely to be that these people truly don't think disabled people feel suffering, or feel it only mildly. It must be something else.
One possibility is that many developmentally disabled people are atypical in emotional reactions to events and in how we show our emotions. I have less sympathy for people who are upset by something if it's something that I've never been bothered by (for example, a claustrophobic in a small space). I also have less sympathy for unhappy people who are harder for me to read emotionally. Not that I don't think their feelings matter, in either case. I just don't feel as strong an emotion reaction to their suffering. And this is when I do realize they're unhappy.
The solution to this is simply to recognize it and remind yourself that just because you don't feel that way or show it that way doesn't mean the person's suffering isn't as strong as yours, and to consciously try to react appropriately.
Another possible explanation is not knowing how to help. As a result, the person withdraws and shows less obvious reaction to the other person's distress. This is also cited often as a reason that bystanders don't intervene in bullying - they don't know how to. The best solution for this is education - learning how to help. If you're a parent having this kind of problem with your child, I have several bits of advice. Firstly, pay close attention to what your child likes and dislikes, and especially how they are comforted. If they rock when upset, for example, they might find you rocking them or sitting in a rocking chair comforting. Secondly, talk to other people and research stuff to find out how others deal with children like yours being upset. Lastly, try things out that you think might work, being careful to stop if it's making things worse.
Another possibility is unconscious prejudice. Although you may overtly disagree with a position, and honestly think you disagree with that position, you might on some level agree with it. This shows up in your emotional reactions and in things you say and do without thinking much about it. It may be that some people deep down don't believe that developmentally disabled people are as capable of suffering as others are, even though their conscious beliefs are quite different. The way to deal with unconscious prejudice is to recognize it in yourself. Once you've recognized it, teach yourself different patterns of reactions by recognizing a prejudice-cued reaction and consciously correcting it, and by trying out different behavior patterns. One of the biggest impediments to dealing with your own prejudice is a strong investment in viewing yourself as a 'good person'.
A third possibility is that very often developmentally disabled people are upset more often and more severely than non-disabled people. If you know someone who often cries, you are likely to get used to them crying, and react less than you would to someone crying who rarely cries. This is appropriate if they cry more often because they show their emotions more strongly, so that mild sadness results in them crying whereas another equally sad person just gets quieter.
But this usually isn't the reason developmentally disabled people, particularly autistic people, act upset more often. Instead, it's that we're under more stress in our daily lives, exposed to more upsetting, tiring, or overloading things on a day-to-day basis than most people are - simply because most people are fine with those things and our society is built around them. Add in the higher rate of trauma and abuse, meaning that developmentally disabled people are more likely to have flashbacks and experience extreme stress.
These sources of extra stress must be dealt with. It's not acceptable for disabled people to have so much more to deal with than non-disabled people. But that's going to take a lot of work, over a long period of time. It's going to take changing the world and discovering things about disabled people that are not currently known. Any closer you can get to that goal is a good thing.
In addition, people need to recognize this. They need to realize that this person they are with is going through much more every day than most people do. Not to pity them, but to take that into account - to give them more support, to avoid adding unnecessary further stress on them, and so on. And not just fleeting reminders - those only change things for a brief time, if at all.
Our suffering shouldn't be used as justification for killing us, subjecting us to harmful 'treatments', preventing the birth of people like us, or many other things it's used as justification for, but neither should it be overlooked or treated with less concern than the suffering of other people. Our suffering is not to be expected and accepted.

Labels: , , , , ,

Thursday, May 01, 2008

Reverse Discrimination

Recently, I read one black person mocking white claims of 'reverse racism'. She suggested that this is an accusation given in reaction to taking away white privilege.
When I was 12 years old, a Native girl told me I was 'too white to be a person'. Recently, I read someone mocking a white woman for being offended by the statement that 'white chicks' were untrustworthy. Malcolm X called us 'white devils'.
The same people who vehemently oppose similar statements towards other races are often willing to tolerate it towards white people. Racist jokes against white people are 'humorous' while against any other race they are intolerable.
This happens with other forms of discrimination. I've heard many women make sexist comments or jokes about men that would not be tolerated if they were made about women. Saying women aren't as smart as men is sexist, right? Then why do so many women seem fine with saying the opposite (for example, one joke states that God offered two gifts to the first man and women, saying they could chose to get either brains, or the ability to pee standing up)?
Regarding autistic rights, I see this so often in the suggestion that NTs are inherently stupid, manipulative, immoral liars, or that they are boring. Discrimination is treated as a distinctly NT behaviour, as are bullying and many other things. The same people who make claims like that are generally the autistics most prone to doing the exact things they accuse NTs of - the ones who are most prejudiced and bullying.
Now, some people claim reverse discrimination simply because they are losing the privileges they are unfairly given. This is certainly true. There are also some people who claim more traditional discrimination when they don't get what they want for very different reasons, as Joel Smith described recently. I remember someone on one listserv complaining that he was being denied some legal-type post because of his Asperger Syndrome diagnosis, but it transpired that he was in fact denied the job because he was a convicted sex offender. Now, personally, I think it's just fine to deny a legal job to someone who has shown a substantial disrespect for the law, in doing something as serious as what he'd done (I believe it was some kind of sexual assault).
But reverse discrimination does happen, and it hurts. Up until recently, I absolutely hated my skin color. White is beautiful, just as black is, but I couldn't see it. I felt personally responsible for all the wrongs that white people have done over history to other races. What I'd read never gave a hint that it wasn't just us who were racist, never discussed racism from other races. The Uyghur people, in western China, are discriminated against by the Mandarin majority. That's only one of many examples, which show that white people aren't the only racists. But non-white racists are invisible. As are many anti-male sexists, and anti-normal disabled people.
I used to think that victims of bullying were 'good guys', the bullies and bystanders were 'bad guys'. But being victimized does not make you morally superior. It says absolutely nothing about your morals. It only indicates anything about the ones who hurt you. And you should not judge an entire category of people based on the actions of some of them. It's wrong when it's done by those in power, and it's wrong when it's done back at them by the oppressed people. Revenge will not make it better, it only perpetuates the hurt.

Labels: , , , ,

Wednesday, March 26, 2008

Mommy, There's a Black Person!

This is a message I just sent to the Polskie Radio:

"Hi, I'm writing in from Canada. Last night, I was listening to Radio Poland on the overnight thing, where CBC presents news from other countries. I don't know Polish, so hopefully the people doing the English section will read this.
I'm writing about a story where one news person was discussing offensive ads. The first one she described, showing young women bungling various 'male' occupations, was clearly sexist.
The second one, however, was about a child saying 'look, mommy, there's a black person'. When she described that, I thought OK, now she'll get to the offensive bit. But apparently that was the part she found offensive - the child pointing out a black person.
I haven't seen the ad, but from what I've heard, it doesn't seem offensive at all. Noticing and commenting on differences in skin color is no more offensive than noticing and commenting on differences in hair color (which the news person did when discussing the first ad). The problem is making a value judgment about skin color, not merely noticing it.
I see no problem in calling myself white. I have several black friends, and I call them black and myself white in their presence without offending them. I have a good friend who is an immigrant from Zambia and she and I talk about race as freely as anything else.
In fact, ignoring race is frequently racist, because very often people will assume the person is white unless they know otherwise. Particularly on radio and other communication where you can't see the person described, this erases black people and other groups. Also, ignoring racial differences usually means ignoring cultural differences too, and expecting people to be like you when they really aren't is prejudiced too."

Labels: , , ,

Thursday, March 06, 2008

Changeling Lullaby



Changeling Lullaby, a video version of the song published in Our Voices.

[Edit: Here's a related post by Amanda Baggs.]

Labels: , , , ,

Monday, January 14, 2008

This is What Murderers Are Like?

While searching for stuff on parents murdering disabled children, I found a different case. Three eight year olds were murdered. When they asked a probation officer who he suspected, he named a bipolar 18 year old because 'he wore a black leather coat in all weather and listened to "devil music" such as Pink Floyd and Metallica.'
They questioned that boy and his developmentally disabled 17 year old friend, and the 17 year old confessed that he, the 18 year old and another friend had stabbed and raped the three boys. The problem: the victims had been beaten instead of stabbed (they had what appeared to be stab wounds, but were actually from wildlife), and had not been sexually assaulted.
Despite the evidence against their guilt, they were convicted. The 18 year old and 17 year old were convicted to life in prison, their friend to the death sentence (this was in US). Luckily, before the last sentence could be carried out, the case 'fell apart' and the three teens were declared innocent.
My question is: how much of this is related to the disabilities that at least two of the suspects had? I know of a bipolar man who was shot as a suspected terrorist, and it seems bipolar people often seem similar to the stereotype of a murderer. Was the fact that the one boy was bipolar related to this?

Labels: , , ,

Wednesday, January 09, 2008

Asperger Syndrome, Nerds and the Why Label? Debate

Here is something I e-mailed the author of a book I read recently called Nerds:

"I liked much of what you said in your book, but one thing I didn't like is your description of Asperger Syndrome.
Firstly, why the focus on 'functional impairment'? That is not an inherent characteristic of anyone. By that definition, an AS-acting person who had no friends and was bullied severely in elementary school but is now a well-accepted engineering student has ceased to have Asperger Syndrome, despite the fact that the exact same traits their classmates hated are all still present. They haven't changed - their situation has.
I am certainly against viewing the characteristics of 'mild autism' or Asperger Syndrome as pathological, but I don't think the best way to do that is to just think of them as nerds instead of autistic. Sure, that might bring people like me more acceptance, but what about the wonderful people I know who are much closer to the stereotype of 'retard' than 'nerd'? What about people like Amanda Baggs ( ballastexistenz.autistics.org ) a wonderful autistic woman who types to communicate and has frequently been referred to as retarded? I'm not willing to leave them behind in my quest for acceptance.
And besides, being called a nerd never gave me the key to understanding myself. Being called autistic has. Though scientists don't really understand autism very well, there's more actual attempt to understand them than nerds. Nerds are known to have trouble interacting with others, but the question 'why?' isn't really asked. According to science, autistic people can't read the nonverbal signals (according to autistics, because we have different ones). If I'm a nerd, there's no help for me. I have to navigate it all on my own. If I'm autistic, I can find out why I have trouble with certain things and what might be able to help me. Of course, I'd much rather pick the third option - understanding the unique needs of the unique and wonderful group of people I happen to belong to and meeting our needs without stigmatizing us - I'm fighting for that very thing.
I hope you can agree with that goal. And I don't want it just for people like me, but for those who fit so poorly into our society's expectations that it seems obvious to virtually everyone that they're incapable."

Labels: , , , ,

Saturday, December 29, 2007

When My Autism Gets Too Big

[second post today]
I recently found a book my parents got me for Christmas a couple years ago which I really hated. It's called When My Autism Gets Too Big. I thought it could be very useful had they not described it as the child's 'autism' getting too big, but as it is I don't want any autistic child reading this book with the idea of using this to help them.
It reminded me a bit of the common practice among parents of autistic children of referring to a meltdown or something similar as an 'autistic moment'. I protested that once on a listserve for parents of autistic Down Syndrome kids, but was not able to describe the biggest problem with it.
I act more or less obviously autistic at different times. Sometimes I'm upset and self injure, speak repetitive phrases or can't talk. Sometimes I'm happy and I flap and trill. Sometimes I talk intelligently and pedantically about rare syndromes to a person I've just met. Sometimes I avoid looking people in the eye and don't react when they greet me. Sometimes I act fairly normal, sometimes I act autistic in one of the myriad ways that autistics tend to act.
All this time, the underlying autistic cognitive style I have is the same. I'm just in different situations, feeling different moods, making different choices. NTs are not judged more or less NT depending on whether they're chatting with their friends, studying a subject they're interested in, taking a break to listen to music they enjoy, crying or yelling at someone or both, or really excited looking forward to something fun. They're just acting the way that person acts in that circumstance.
And so many autistic children don't really understand what autism is. If you watch videos about 'recovered' autistic children in which they're asked what autism is, a common reply is to demonstrate some of the stims they used to do. 'Autism is flapping your hands like this.' Studies have shown that siblings of autistic children tend not to understand autism very well - for a variety of reasons, autistic children likely have an even poorer understanding of autism than that.
And I hate the idea of a child who doesn't really understand how they are different associating 'autism' with being overloaded. If they think that's all autism is, they will not understand why they have such different likes and dislikes than the other children, why the others don't make sense to them, and why they are so good at some things and not others. If so, what's the benefit of the diagnosis for them?
The biggest benefit of being diagnosed autistic for me, and many other older autistics, is increased self-understanding. But we can search out and understand the information out there about autism, and think critically about it, and keep looking for our answers. Autistic children often can't do this. Their only source for understanding autism is what the adults in their life choose to tell them. And if what these adults choose to tell them is just associating autism with overt behaviors or specific moods, then their diagnosis gives them no help in the difficult task of understanding themselves - a task already made difficult by the pervasiveness of the NT perspective and lack of discussion of the autistic experiences.
I wish they'd taught kids to think of it as, if not overload, then 'too much X', like the standard 'too much birthday'. NT kids, when they are overloaded, are not told that their 'allism' has gotten too big. Instead, people say they've had 'too much' of whatever they were doing. Don't tell autistic kids that autism means overload or stimming or something like that. Make it clear that autism goes deeper than that.

Labels: , ,

Tuesday, November 27, 2007

Language of Us and Them

http://www.oafccd.com/lanark/poems/language.html
A link I was looking for awhile ago but only found now.

Labels: ,

Tuesday, November 06, 2007

What is Relaxed?

The current blog carnival theme is 'how do you relax, unwind'. I kept putting off writing my entry, because I wasn't in the right mood to think about relaxation. But I just realized I could talk about why it's so hard for me to relax.
Firstly, I have PTSD, and by definition, PTSD impairs relaxation. Having had something terrible happen to you makes you on guard for anything else like that. So relaxing is difficult, because I just don't feel safe easily.
In addition, society is constantly bombarding me, as a target of discrimination. When I'm reading, listening to the radio, talking with someone, or basically anything that involves receiving communication from others, discrimination can come up and hit me out of nowhere. And it does feel out of nowhere. If someone means to hurt your feelings or be cruel, usually you can see it coming. You're having an argument, they're angry at you, whatever. But if they assume everyone agrees, and rather than being deliberately offensive they are stating the truth as they see it, or even trying to be nice, then it comes in a friendly context, when you're starting to feel safe around them. And they might not even know I'm autistic, in addition to not knowing they're discriminatory.
So relaxing isn't easy. The few times I've felt what I think is called relaxed, it sneaks up on me. I suddenly realize that I feel safe. I often feel safe home alone with only my cats for company, but even so my triggers lie there lurking, able to shatter that calm. Sometimes I feel safe with my parents, but if they say or do the wrong thing I get triggered. Occasionally, I feel safe with my brother, but if he pesters me a bit too much that suddenly disappears. Once, I felt safe with people I'd only just met - a youth group of developmentally disabled people, among whom I no longer felt different. Feeling safe creeps up on me slowly, yet disappears suddenly.
When I realize I'm getting too upset and need to relax (usually late in the build-up of my stress), I don't know how to relax. What do I do? What is relaxation anyway? I honestly don't know what relaxation means or how to achieve it when I'm upset. Instead, I continue quietly teetering on the edge of meltdown until either something sets me off or (less often) I accidentally calm down somehow. I can't keep going on this way, I need to learn how to relax so I'm not constantly having meltdowns anymore.

Labels: , , ,

Tuesday, October 02, 2007

Disability Blindness

This is a post I've been planning to make for a long time, but only got around to it now.
I have a book called Lifting the White Veil, which is about racism and focuses on what it means to be white, and how whiteness is often 'invisible'.
One chapter discusses colorblindness, and the problems with that view. Now, most people don't seriously think you should ignore disability like colorblindness ignores race, but there's this idea that you should see the 'person first', pretend you don't notice the disability except in very circumscribed situations, and completely ignore some of the more important aspects of disability (particularly the interaction between disability and identity).
Here are some of the criticism of colorblindness made by that author, and my own comments about how they do, or don't, parallel the 'politically correct' view of disability.

Colorblindness denies that race makes a difference in people's lives.
This isn't that true of disability, but considering that he's not talking about different cultures but instead the effect of racism, an important parallel can be made. I've certainly seen a 'blindness' to disability discrimination. This article studies alexithymia and depression in autistics, and despite quoting one person who directly linked prejudice to her own depression, completely ignored the possibility that being treated as inferior and wrong and expected to act in ways totally different from who you really are might explain why autistics are so often depressed. The closest they came was to state that:

"Whereas the slow compensatory acquisition of an explicit theory-of-mind has made the awareness of inner states possible, at least to some extent, it has also led to an increased awareness of the failure to “fit in.” This indicates a cost of compensatory learning that has not
always been realized. Increased depression could therefore be seen as a secondary reaction to a theory-of-mind deficit, dependent on specific experiences in the recent past."


which isn't very close at all. In general, any kind of problem a disabled person has must be a) a part of their disability or b) a natural psychological reaction to awareness of their disability, not c) internal or external discrimination. Only in a few cases do mainstream people seem to recognize disability discrimination, and generally only (as with racism) in its older forms. Even when discrimination metaphorically bites them on the nose, they don't recognize it or name it for what it is.

Colorblindness enforces a taboo against talking about race.
Definately a problem for disability as well. I have to dance around finding out what syndrome the children I volunteer with have, even though it's relevant (for example, knowing one girl has Rett Syndrome, I'm on the lookout for signs of motor apraxia in her - there are plenty - and can use that framework to help understand and assist her). It's viewed as rude to even mention disability. I don't feel it so much with mentioning my own disability - if there is a taboo against saying you're disabled, I haven't noticed it - but certainly with mentioning other people's disabilities, especially in front of them. This is likely a big problem with many of the children I work with, because it makes it harder for them to get information about their own disability in a direct way so they can process it effectively.

Colorblindness believes color consciousness must be racist.
Being aware of disability may not be assumed to be discriminatory, but certainly treating disability like it actually might have relevance for a person's identity often is. And if you break 'the rules' about mentioning disability (eg a child asking about disability) that is treated badly, and though children may get away with it, an adult who doesn't seem disabled probably will be considered rude. In general, however, most people are often less aware of disability discrimination in any form than they are of racism.

Colorblindness sees other racial groups but is blind to mainstream whiteness.
I've certainly seen this with disability as well. I recently noticed that when people think of what it means to be, for example, a 7 year old, or a 12 year old, what they think of is a normal kid that age. If a kid doesn't fit that, then there is often some cognitive dissonance between knowledge of their age and awareness of what they're like, as if they are 'really' some other age. But if you see several kids with the same condition at various ages, you see that there is often commonality between kids of the same age as opposed to other ages. For example, I can sort of see a 'type' among late preschool/early school-age Down Syndrome kids - they are often about a certain height, with a certain build, talk in single words/short sentences with very unclear pronunciation and are playful, mischievious, sociable and caring. Not all DS kids of that age group fit this type, and those who do aren't all the same any more than normal kids around that age are, but just because they're disabled doesn't mean their age is irrelevant to what they are like. I also see this in many other circumstances. Some people have said things like 'humans are social beings' or 'we are all sexual beings', statements which exclude many autistics. It's assumed that 'generic human' is the normal people, disabled people are 'special'.

Colorblindness believes we will all assimilate into the mainstream.
Disability blindness assumes all disabled people want to be normal.

Colorblindness says we are only individuals.
He clarifies to say:
"Actually what colorblindness says is that 'we are all individuals,' which is true, but colorblindness acts as if 'we are only individuals,' which is false. We are all individuals. We are all the same (which colorblindness admits as well). In between being completely unique as individuals and completely identical as human beings, we are all members of social groupings, be it men, women, white, black, red, yellow, brown, mixed, gay, straight, middle class, upper class, lower class. Our social group status does not define us exclusively. Nor does our common humanity. Nor does our individualism. Each of these contributes to our experience and our nature. To single out one and hold it above all others is arbitrary and misguided."
I can't say it much better than he does. I'm a human being and have some things in common with every other human being. I also have some things in common with every other autistic person, besides what I have in common with all humans. Then there are some things, and the particular mix of things, which I don't have in common with anyone. I'm unique, I'm autistic (among other groupings, such as white, female, etc), and I'm a human being.

Colorblindness believes intent, not effects, are important.
Jerry Lewis has often said 'no one is against the disabled'. Many parents of disabled children act as if loving your child excuses any way your behavior harms that child. Caregivers of disabled people protest 'but I'm a good person!' when challenged on their misuse of power. Piles of people act as if the fact that you want to do good automatically means you're not discriminatory, when that's only one part of what you must do. In fact, in addition to having good intentions, you must also a) recognize your own faults, b) understand how society distorts people's view of disability and c) be willing to listen to disabled people, even (especially) when what they say is hard for you to accept. I've probably left stuff out, but if you have those, you're well on your way. Just having good intentions is nowhere near enough.
Besides, from the perspective of the target of all this, whether someone meant to hurt you matters much less than whether they did hurt you.

Labels: , , , , ,

Wednesday, August 15, 2007

Angry Disabled People

I was reading about how angry women are stereotyped, and was thinking 'how are angry disabled people viewed?' And here's what I think the answer is.
There are two ways angry disabled people can be viewed. The first is as 'bitter' about their disability. Even if their anger is not because they are disabled, but because they are discriminated against, it's viewed as an emotional reaction to disability. There's a phrase I've heard - 'bitter crpple' - which sums this up, except it's not just physically disabled people who are treated this way. Any disabled person who is treated as having enough of a mind to perceive how they differ from others may be viewed this way.
Michelle Dawson, an autistic woman, wrote a letter to the Canadian minister of health regarding autistic people being banned from speaking at an autism workshop where both parents of autistics and professionals working with autism would be allowed to contribute. She eventually received a reply in which the current minister of health said the following:

"I would like to express my sympathy to you for your struggle with autism. I appreciate how this disorder would have a profound impact on you and your family."

So rather than recognizing her anger at injustice, he decides to try to appease it by offering condolences, as if she was angry about being autistic, rather than angry about not being heard.
Some developmentally disabled or mentally ill people are not treated this way. Rather, they are viewed as if they are too incapable to notice that they are different or react to discrimination, and instead their anger is automatically attributed to their disability - for example, they are having an 'autistic meltdown'.
Even a neurotypical 2 year old can notice injustice, although they may not be able to explain or understand what is going on. If, whenever they expressed emotion, you immediately reinterpreted their emotion as something different and reacted as such, most toddlers would get angry. They would not be able to describe what you are doing, but they would be upset by it. Their anger would not be an inherent part of being a toddler or a reaction to how 'awful' it is to be so incapable. Instead, it would be a justified reaction to injustice.
Granted, toddlers, like anyone else, will get angry regardless. Frustration, tiredness, hunger - all those can make a toddler angry. But that doesn't mean they aren't capable of getting angry at injustice. People tend to overestimate what abilities are needed to recognize injustice. You need not be able to label it or understand words like 'discrimination'. All you need is to be able to feel unfairness.
Ettina

Labels: , ,

Tuesday, May 22, 2007

Discrimination and Fear of the Unknown

I've often heard people say that discrimination is 'fear of the unknown' and if you educate people about a group and get them to get to know people from that group, they won't be discriminatory.
Recently, my father told me about people working for the Hudson's Bay Company who lived among Native people, married a Native woman and had children, and then when the opportunity came, they just left them to go back to Europe. Now, Native people certainly weren't 'unknown' to these people, but still, they were discriminatory against them to a rather extreme degree.
And what about slave owners? They certainly weren't unfamiliar with black people, yet few nowadays would disagree that they were discriminatory against them. In fact, it was in noerthern US and Canada, where there were much fewer black people, that they were less discriminated against (though they still were).
I think what kind of relationship they have is far more important than how much contact they have. It's a bit like stray animals - they say a cat who was born feral is easier to tame than one who was abandoned, because one cat has little knowledge of humans while the other knows from experience that humans can be nasty. If your interactions with a certain group are with you in a position where you're encouraged to think you are superior, you will tend to learn to be discriminatory against them.
Also, once you've learnt discrimination, it's hard to unlearn. You can interpret almost anything as a sign they are inferior. They treated Native customs as 'primitive'. If you value mass production and industrialization, the Native cultures would seem primitive. But that is by a rigid definition of what is good and bad.
Now, with having said that, is it any wonder that mainstreaming hasn't been a magic solution to discrimination against disabled kids? Their classmates are taught to value conformity, and they see one kid who is different. Often they see adults acting particularly patronizing and 'helpful' to that kid, more so than the others. They may even be explicitly taught to patronize and 'help' the disabled kid - see Hell Bent on Helping. So they bully the kid, exclude them, or patronizingly 'help' them. All three are discriminatory ways of behaving.
Not to say that a person who knows absolutely nothing about a group can't be discriminatory, of course.
Ettina

Labels: , , , ,

Friday, May 04, 2007

After the First One

People tend to talk a lot about the first person to do something. First person to walk on the moon, for example. Rights movements also have their firsts, the people who first break through an absolute barrier. First woman doctor, first black politician in US, etc.
My question is, after the first one, what do we do next? How do we get from that point to the one where it's nothing strange, where we have plenty of women doctors, or black politicians, or whatever. Even now, when women doctors are nothing particularly odd, there's still inequality, with the glass ceiling and less women than men choosing to be doctors in the first place.
Tamora Pierce is a fiction writer. She has written several books set in a land called Tortall. The first series was Songs of the Lioness. The star of that story, Alanna, disguises as a boy to become a knight. After she gains her shield, her gender is revealed, and the king declares that girls are now permitted to become knights.
Then she has a series called Protector of the Small, about a girl named Keladry, the second girl in Tortall to become a knight. Alanna pushed open the door for lady knights, but it's not completely open. She is an oddity and treated badly by many of the other knights-in-training and the ones who teach them. I really like this series because it shows that it is better, but still not perfect, compared to when Alanna became a knight.
The absolute barrier of 'no X allowed' is easy to see. It's easy to know what to fight. But what about the barrier where things are just simply harder for X people, not due to inherent lack of ability but the effects of discrimination. How do we fight the problem of girls learning that science isn't a 'girl thing' and therefore not seeking careers in science? How do we fight the problem of organizations hiring 'tokens' of various groups so they can point to them and say 'see? we're inclusive!' without really changing anything? I don't really know the answer.

Labels: , , , ,