Friday, September 26, 2008

Who You Are Isn't Good Enough!

We recently got Catherine Maurice's Let Me Hear Your Voice for a conference presentation my mother and I are doing (about the use of war metaphors in autism - something that book has a lot of).
I was shocked, when I read her book, to see:

"I mean only to say that this autism thing was taking over the very essence of who Anne-Marie was. She did not 'have' autism; she was autistic. She was already so alien, so distant. When no light shone in her eyes as she glanced at us, no smile or recognition crossed her face, then no longer could we find a self in her."

The phrase in bold rang in my head, because so many autistic self-advocates say the exact same thing. But it's different.
Many parents 'fighting' autism are pretty clearly using the 'trapped child' metaphor, that something - autism - is imprisoning their child, who is somewhere in there trying to get free. The use of person-first language parallels this. But Catherine Maurice had more of a 'stolen child' metaphor, that her child was being replaced by someone else (although her view of Anne-Marie has elements of both).
What shocked me was that she viewed autism as part of the essence of who her daughter was (at least after her regression) and yet she still wanted to change her - to make her normal. If she really could do that (she had the usual 'magic-like' notion that just forcing a child to do normal things would change their brain into a normal brain) then she would actually be destroying the autistic Anne-Marie, in order to get a completely different (normal) child in exchange. And yet she felt it was for Anne-Marie's benefit!
What she was trying to do is a lot like a parent who aborts their Down Syndrome infant and then gets pregnant again, to 'replace' the DS child. The only way you can view something like that as at all benefitting the DS child is if you consider their live so worthless, so tragic, that nonexistence is prefferable. Leben unwürtiges Lebens*.
Of course, in reality, ABA does not make your child into someone else any more than any other life experience does. It can't make an autistic brain neurotypical, just teach an autistic to act neurotypical.

* A German phrase meaning 'life unworthy of life', used by the Nazis to refer to disabled people.

Monday, September 22, 2008

Canadian Federal Election Disability-Related Issues

This is a search on the Internet for mention of disability-related issues by the various candidates for the upcoming Canadian federal election. It was inspired by a similar post on some listservs regarding the US federal election. I've highlighted the disability-related parts of the quotes. [Note: Partway through doing this, I found CACL's Party Policy Platforms website. My blog entry here complements their information.]

Conservatives (Stephen Harper):
"I am mindful of the circumstances facing many people with disabilities and their families, and do recognize that many live on low and modest incomes. The Canada Pension Plan was designed to provide a basic level of earnings replacement in the event of the retirement, disability or death of a contributor. ...
The maximum benefit payable in 2007 is $1053.77/month. In 2006, the average monthly benefit paid was about $760.00. There is also a benefit payable to children under the age of 18, and if at school full-time, for children between the ages of 18 and 25. In 2007, the Disabled Contributor's Child's Benefit is $204.68 per month, per child."

"Prime Minister Stephen Harper closed out three days of campaigning in Quebec yesterday by promising income-splitting for families where one spouse is staying at home to care for a family member with a disability.
In a restaurant in the Eastern Townships town of Farnham, Harper also said he would improve the Registered Disability Savings Program to make it easier for persons with disabilities to be able to receive the unused retirement savings of a deceased family member.
The Conservatives said that, according to Health Canada, there are more than one million Canadians who are providing care for relatives who have mental or physical disabilities. Three-quarters of those caregivers are women."

"Losing access to day-care services such as special needs programs is very much a possibility with Prime Minister Stephen Harper's pledge to tear up federal-provincial funding agreements next year, argues Sharon Hope Irwin, director of SpeciaLink, the national centre for child care inclusion.
Harper instead plans to move forward with $1,200 annual grants for each child under age six and $250 million in tax credits for employers and non-profit agencies to provide new spaces. Most premiers have said they have concerns with Harper's plan, although Pat Binns of P.E.I. and New Brunswick's Bernard Lord approve of the grant system."

"Mr. Harper has suffered from asthma since childhood. Even today, it can hamper his performance, bothering him for weeks at a time, and then abating. When Mr. Harper was young, asthma limited his ability to play team sports, especially his beloved hockey (although he has never been comfortable playing on a team).
He compensated by taking up track and field in high school. One person who has watched him suspects asthma might contribute to a tendency Mr. Harper has to fade in the final stretch of a long campaign."

Liberals (Stéphane Dion):
"Liberal leader Stéphane Dion disclosed today that his fractured English is the result of a hearing problem.
'I have a difficulty to isolate sounds,' he told reporters at a campaign stop outside Montreal.
'If I am at a cocktail party and everybody speaks at the same time, I will have difficulty. And it may affect my ability, then, to catch the music of the beautiful language of English.'
He said he didn't know the name of the problem but had been tested by a hearing specialist.
'It's the case that I hear everything when the sound is isolated but when it's confused with other sound, then it's completely confused. My mother had the same problem.'"

[Note: this condition sounds an awful lot like Central Auditory Processing Disorder, and it can indeed make learning a second language more difficult.]

"making the Disability Tax Credit refundable, ensuring that low-income individuals who are disabled are able to directly benefit from this tax credit. ...
change the CPP disability requirements to ensure that those with episodic illnesses – such as Multiple-sclerosis and some mental illnesses – do not jeopardize their ability to collect CPP or QPP disability benefits if they work when they are able to. ...
help provinces use internet technology to provide health care in both official languages as well as deaf language interpretation; ...
work with the Mental Health Commission to develop and launch a public awareness campaign to reduce the stigma of mental illness. ...
When the drug costs of an illness become too much for a family to bear, the federal government should be there to help. This need becomes even more pressing with an aging population. That’s why a Liberal government will create a new plan for catastrophic drug coverage to cover this cost. ...
A Liberal government will honour the original goal of Medicare: to keep Canadians well, not just to patch us up once we got sick. The ever-increasing costs of our health care demonstrate that it is not sustainable for us just to fund a “sickness care” system. The sustainability of our cherished health care system will require Canadians to make healthy choices and use the system wisely.
A Liberal government will reinstate the popular Canadian Health Network website to provide up-to-date, authoritative information on healthy living and disease prevention. We will also support work to develop a comprehensive set of evidence-based clinical guidelines, such as for breast cancer diagnosis, which can be disseminated to health professionals and to all Canadians on the site. That way, new research and best practices can be available to all Canadians no matter where they live. ...

In order to reach the goal of having the healthiest possible Canadians, we need to be able to properly measure health outcomes. From asbestos related diseases, to the effects of pollution, learning disabilities to brain tumours, we need better data than is currently available. A Liberal government will work with provinces and territories to begin the process of a pan-Canadian profile of infectious and chronic diseases, mental illness and injuries.
We will also expand the Canadian Health Measures Survey, to provide much needed information to help evaluate the risk factors for, and extent of, major health concerns such as diabetes, obesity, hypertension, cardiovascular disease, exposure to infectious diseases, and exposure to environmental contaminants."

NDP (Jack Leyton):
"After consultation with communities and workers, the federal government will invest in community economic development for communities being negatively affected by the crisis in the asbestos industry and develop a Just Transition Program to help mitigate the effect on workers now employed in the asbestos industry, including but not limited to measures such as:early retirement, retraining and other bridging measures to accommodate re-entry to the workforce;inclusion of workers not employed directly in the asbestos industry but whose jobs still depend on the industry; and broadening disability compensation to include all victims of asbestos related diseases in Canada."

"I believe the same core principles provide the same core protections of every citizen of this country irrespective of sex, race, religion, disability or sexual orientation. I am gratified and proud that most of my fellow citizens agree."

“Right now, disabled veterans and their families are struggling financially with claw backs to their disability pensions through SISIP. Many widows cannot access assistance for home care through VIP because of restrictive criteria, and our older veterans have to fight tooth and nail to receive a disability pension for hearing loss. This is no way to treat those who have served our country. The federal government must act on these issues – and act now.”

"Today in Canada half of the homeless in our cities are people with disabilities, and so are 40% of those who must go to food banks to eat.
Successive Liberal and Conservative governments have paid only lip service to the growing concerns and needs of the disability community. They have failed in developing and implementing a long term action plan that would address the lack of support, the growing poverty and the high unemployment of this community. They have failed in ending the shameful exclusion of five million of our fellow Canadians.
Measures that have been taken so far were piecemeal and largely tax related. Only a small minority of Canadians with disabilities were able to take advantage of these tax credits. ...

On December 13 2006, after four years of negotiations, and with the international participation of civil society and NGOs, the United Nations General Assembly adopted the first international covenant on the rights and dignity of people with disabilities. This covenant fills an important gap in international law, by providing universal legally binding standards which create a global framework for inclusion.
Congratulations to the Canadians with disabilities and to Canadian Disabilities groups who have played a leading role in the drafting of this new international covenant on the rights and dignity of people with disabilities!
The Convention shall enter into force in March 2007, once twenty countries have ratified it.
Each country which ratifies the Convention accepts its legal obligations under the treaty and must adopt implementing legislation, and report regularly on its progress.
We all know that the government of Canada should be the first government to officially endorse the Convention."

Green (Elizabeth May):
"In our vision of Canada, ability or disability, economic, racial, or cultural backgrounds do not preclude individuals from contributing to and benefiting from a prosperous Canada."

"This article contains the results of a survey about how canadians treat the mentally ill, in particular, how they react upon hearing news that someone was diagnosed with a mental illness. I find the attitudes the survey unveils in this treatment to be very disturbing news about the state of empathy and compassion and the level of ignorance about what a mental illness or a shadow syndrome is, and their inability to assess the severity of it. Over 50% of canadians will suffer from depression at some point within their life span according to the canadian mental health association. Not all of them will be diagnosed or treated by a longshot, due to the stigma associated with it."

"Today is the United Nations’ day designated to celebrate persons with disabilities. We are usually aware of the constraints persons with disabilities have but rarely do we think of the contributions that the same group of people make to our community and country. Any of us can, in an instant, join this group, now estimated at 10 to 12 percent of the global population.
In spite of physical or mental problems, most disabled persons are actively involved both at work and in their community. Many hold responsible jobs and others make significant contributions to their communities as volunteers.
The annual observance of the International Day of Disabled Persons aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life.
Each of us can make a difference in creating a healthy and inclusive society. Observance of the Day provides opportunities for participation by all interested communities - governmental, non-governmental and the private sector - to focus upon catalytic and innovative measures to further implement international norms and standards related to persons with disabilities. Schools, universities and similar institutions can make particular contributions with regard to promoting greater interest and awareness among interested parties of the social, cultural, economic, civil and political rights of persons with disabilities.
As leader of the Green Party and Chair of the Federal Council, we would like to offer our congratulations to all persons with disabilities and especially those in leadership roles who are making all of us better individuals and Canada a better and more inclusive society."

Note also that issues relating to poverty, health care and diversity (eg gay rights) are likely to impact on disabled people or reflect how well the government is likely to treat us, and so should probably also be taken into account when deciding how disability-friendly each party is.


Friday, September 19, 2008

Back to School Meme

I found a meme here in which you answer a series of questions about school.

1. School uniforms: Good thing or bad thing? Why?

Bad thing, because of the accessibility issues involved. Two big groups adversely affected by school uniforms are tactilely defensive students and prosopagnosic students.
Tactile defensiveness, for those who don't know, means that certain touch sensations that most people are fine with are really unpleasant for the person. Many tactilely defensive people can only tolerate certain types of clothes, such as soft loose pants and soft short-sleeved shirts (for me). If the school uniform doesn't happen to be the right kind of clothes, the person either has to break the uniform rule or suffer wearing unpleasant clothes all day.
Prosopagnosia is a specific impairment in facial recognition - a prosopagnosic person, despite having no trouble recognizing other kinds of things, can't recognize people's faces. Prosopagnosic people depend on other cues - such as gait, voice, hairstyle, clothes, place, etc - to recognize people. A school uniform makes everyone look more similar, and therefore makes it harder for prosopagnosic children to function socially. It's a bit like trying to relate to identical twins dressed in identical clothing, as opposed to identical twins dressed in different outfits. The outfits aren't useful from day to day, but if you learn who is wearing what each morning you can tell them apart until they change.
Both tactile defensiveness and prosopagnosia are common among autistic people, by the way.

2. School supplies: Our school district operates under a limited budget and school supplies other than notebooks and paper tend to be common use, meaning the class shares what each child brings in. What is your feeling on providing for the class rather than just your child?

Sure. I'm not selfish.
Actually, I think it's a great idea - get the richer parents to provide supplies not only for their children but the children whose parents can't afford those nifty supplies.
The only problem I could see is if you didn't know this or couldn't afford to buy enough supplies, and so your child didn't get enough opportunity to use what you bought them. But hopefully if you have a mixed-income school with parents who all want the best for their kids, it'll work out.
Now, this raises another issue. Why does the school have such a limited budget? If our society really thinks education is important, why aren't the school systems better funded?

3. Favorite classes: Math or science? English or History? Band or chorus?

Science, by far. I'm actually one of the few people who did really well in science and really poorly in math - science involves so much math that most people who do well in science also do well in math. But I can't stand math unless it's in a meaningful context, which science provides. My mind just turns off with noncontextual math.
I didn't really like English or History. If they were taught properly, I'd have loved both - history is actually really interesting, and I'm an avid reader and excellent writer, but both of those subjects are taught in a boring, regimented, pointless way. They should get creative people to teach those two classes, especially English.

4. Foreign languages: Did your school have a foreign language requirement? What languages did they offer? Did you take a language?

I attended French immersion until I started being homeschooled. In grade 3 or so, we started having English class - the only class that wasn't in French.
I went to grade 10 in an English high school. I'm not sure if they required foreign languages, but I took two foreign languages - Spanish and Mandarin Chinese. I was really disappointed that they didn't offer ASL.

5. Visiting the past: If you could go back to school, would you? Or is it better off in the past?!

Only to do something to change the school. I might go there to help write my book about school trauma.

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Friday, September 12, 2008

Unusually Good Asthma Doctor

A little while ago, I went to get a new prescription for my asthma medication. While I was talking to the doctor about my prescription, I asked her about how to make sure to take my medication regularly, something I've had doctors get mad at me for not doing even though it's executive dysfunction that makes me go off my medication and I really can't help it (I thought I'd blogged about that before, but all I could find was this).
She didn't give me any advice on that (which is too bad because I have the same problem with antibiotics) but instead she told me that I actually don't need to stay on my asthma medication if I have no symptoms. I thought the daily puffer (Flovent) was a preventative and the one I take during an actual asthma attack (Salbutamol) was a fast-acting symptom relief one. Which is technically true, but it turns out they actually do different things, whereas I thought they did the same thing over different time ranges. Flovent apparently reduces swelling, while Salbutamol stops spasms. Anyway, it turns out if I'm off both medications and breathing just fine, I don't need to take them - even the Flovent - but if I'm having to take the Salbutamol (and therefore, clearly having symptoms) I also need daily Flovent. So my instinct that I kept fighting against to only take my medications when I feel sick is actually right in this case.
What I really like about this doctor is that, unlike every other doctor I've seen for pretty much any physical problem, she treated me like a knowledgable person, who not only needs to know what to do but also needs to know why. Exactly how I'd treat a patient if I became a doctor. I love being treated like I'm capable of understanding things.

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Wednesday, September 03, 2008

The Social Value of Demand Avoidance

I read a great book called The Wind Singer. In this book, a set of twins live in a very regimented, controlling walled city called Aramanth. One of them, a girl named Kestrel, is one of the story characters I've identified with the most. She is very idealistic, passionate, and stubborn. She is demand avoidant, though I wouldn't say she has the clinical syndrome characterized by that, because she's not autistic enough.
Anyway, no one in Aramanth is really happy, or at least not as much as they would be in a freer society. But most people can cope. Kestrel, however, can't cope, can't accomodate herself to her environment, so she's the one who changes it.
I'm not sure who it was, but someone once said that "The reasonable man accomodates himself to society, but the unreasonable man expects society to accomodate to him. Therefore, all progress depends on the unreasonable man." The way I see it, demand avoidant people are the 'unreasonable' people in that saying. We're like the canary in the coal mine - the same unpleasant things that others can tolerate are intolerable to us. Teachers with rigid ideas, rigid lesson plans, rigid teaching styles aren't really good teachers for most kids, but they are terrible teachers for demand avoidant kids.
I remember thinking about one girl I know with Rett Syndrome that she might in some ways be better off if she had meltdowns. Because she really needed to know what was expected - if she didn't know, she was confused and functioned much more poorly. But that's not that overtly unpleasant to other people or disruptive to the system she was in, and it was easy to confuse that with her disability. Whereas another girl I worked with, who screamed, self-injured and bit people when her routine was changed - well, everyone working for her made sure to keep a regular routine going, because they couldn't handle her like that. (Of course, in other ways the Rett girl was better off not acting like that - she didn't get hurt, she was probably less upset, and her helpers didn't get scared of her. Also, she was exposed to more things, some of which she couldn't necessarily handle, but some of which was educational or enjoyable in various ways.)
As for demand avoidant autistics, a good example is ABA. Most autistic self-advocates are either opposed to ABA in general, or at very least opposed to most/all ABA programs actually in operation. On Youtube, there are a lot of videos of autistic kids getting ABA, and seldom do those kids seem happy. They seem to be putting up with something unpleasant in exchange for a reward. ABA is all about the child accomodating other people, with no recognition that the child needs to be accomodated by others as well. And the ABA-treated autistics I've met all seem to have very low self-esteem (either that, or they used to and have recovered).
Now, most autistic kids can tolerate ABA, and make progress in an ABA program. Demand avoidant kids aren't like that. I've written elsewhere about how I would have acted in an ABA program, based on my behavior in a controlling school - this is typical of children with the subtype of autism defined by demand avoidance. And because of that, the advice about educating kids like me strongly discourages the use of ABA. I heard one parent say that she wished this syndrome wasn't considered an autism spectrum condition because the standard autism treatments don't work on these kids - I say, based on my experience with autistic kids of all kinds, that the methods that work well with kids like me also work well (with adaptation of course) with all sorts of autistic kids. And with none of the ethical issues of ABA.
Which brings me to my last point. Demand avoidance has a social value in sending the message that there is a problem here. But one danger is that the demand avoidant kid will be treated as an exception, and get what they need, without any benefit to the rest of the children who have a less obvious need for the same treatment. Just because a child doesn't absolutely need a certain environment doesn't mean they won't be better off in that environment. It's like if you saw the canaries in the coal mine having trouble breathing and just said "Oh, canaries need better air than this" without taking into account that the same air is harming the miners to a milder degree. We need to listen to the messages that these 'canaries in the coal mine' are sending.

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Tuesday, September 02, 2008

Accepting Imagination Deficit

Autistic people are said to have an imagination deficit. At first, when I heard that, I outright rejected it, saying things like 'the people who think autistics lack imagination are the unimaginative ones'.
In my case, I've come to realize that I actually have a form of autism in which imagination is usually a talent, certainly not a deficit. Based on that, I've been researching 'creatively gifted' kids, to better understand what that actually means.
But it just occurred to me that if, as I believe, there are some people who are inherently more creative, there must also be people who are inherently less creative - just as the presence of intellectually gifted kids requires that there also be developmentally delayed kids. Whether these unimaginative children are autistic or not, they, too, are part of neurodiversity, and should be accepted for who they really are and viewed as valuable individuals. But whereas I have no trouble accepting both gifted and delayed kids, I find it hard to accept unimaginative kids.
What would unimaginative kids be like? Well, according to this study, they'd be tolerant, practical, reliable, dependable, responsible, logical, understanding, appreciative, good-natured and sincere. To me, that sounds mostly like a mix of good organizational skills and being a people-pleaser. I can accept that people like that are useful, that they counteract some of the problems creative people tend to have, that while creative people tend to be better at coming up with ideas, these people would be better at actually implementing them. But I think of the joy and beauty of creating something new, and I don't really feel that those things make up for not having that.
Now, I'm sure I'm not being fair to them. Likely, things that have little appeal to me bring a similar kind of joy to them. I know I'm doing exactly what Amanda Baggs criticized here, but I don't know how to stop from doing that. Or, as Zilari explained in a comment on the above post, part of my checklist of things someone must have in their life to be happy is 'creating things'. It's certainly part of what I need in my life to be happy, but clearly not that way for many other people. But I just can't imagine how someone could be noncreative and happy that way.
I'll just have to keep working on it.

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