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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, March 07, 2006

 

The Hotbed of Discrimination, Acceptance and Advocacy

Recently, I’ve seen two wonderful bloggers go “off the air.” This Mom and 29 Marbles have decided to take a reprieve from the consuming blogging universe. I am saddened by their departures, and consider the hotbed of issues being discussed can leave us all feeling dizzy.

Parents are trying to understand and raise their autistic children. When are children are initially diagnosed, our first entry point is to a world of medical professionals trained in describing abnormalities, illness, deviations from the “norm.” Other immediate entry points are the Internet and high-profile organizations raising money for autism research. I would imagine that it takes an extremely strong individual, or an experienced one, one who has been in a family with disability, to shove the apocalyptic voices aside. For most of us, it is a journey of understanding autism and coming to understand our children with autism.

For me, I quickly felt uncomfortable with professionals viewing my only child as a pathology. I guess love did this, and that’s a good thing. Acceptance is the next word that comes to mind, but the journey to acceptance, for me, is still an arduous one – the pull of therapies, professionals versus listening to myself, then, the strong voices of the autistic community often condemning parents as abusers. These are really harsh voices, and I’ll be frank here – I do agree that there are therapies and parents that are harming their children – chelation, viewing autistic children as a set of bad behaviours, pathologies – it does take away the humanity of the autistic person. It is prejudice. Yet, there are parents still searching, trying to help their children function in the world without frustration, and those parents need supporting.

After acceptance comes a search into the history of disability, racism and human rights, the construction of normalcy, and the social construct of autism. These are weighty issues and my background is in fine art and literature, not philosophy, although I have an interest in it. As a parent, and a lover of knowledge, I am trying to go back to some of these roots in order to figure out where my belief systems come from.

I use myself as an example in yesterdays post regarding racism – a quick, seemingly innocuous, tapping of the keyboard that put two words together that are interpreted in a certain way, and I am reminded that semantics and words are indeed important. May we all learn from our mistakes, may those that cast the first stone not make the same mistake, harbour any furtive thoughts, of be self-righteous (“The greatest of all sins is self-righteousness”). I use myself as an example not to state that I am a racist – hardly – but rather, how stereotypes are firmly entrenched in our minds. This is a story about how our minds interpret the world.

On Philosophy.com, Jonathan Miller author of Beyond the Fringe states, “The job of philosophy is not to find out the meaning of life, or our relationship to the larger metaphysical principles of the universe; it is finding our relationship of the mind to the world. How the world is represented in the mind; how do we come to have knowledge; what do we mean by certainty. These are the only things about which you can ask questions. I am interested in problems for which you can foresee a solution; questions to which there is possibly an answer.”

As I consider this, I still have yet to find that light at the end of the tunnel. By slipping up, I have to look back at history to understand where I am coming from, all the walls I have to still tear down as I figure out how to best parent my son, how to dialogue in this hotbed of emotions from parents and autistic people.

In Intellectual Conservative Politics and Philosophy, Wendy McElroy titles her article, “Disability Must Be Defined Before Debated.” It’s a good article about attitudes towards the spectrum of disabilities and I am reminded of the contention between various levels of functioning between autistic people. The story in essence, starts with Janeal Lee, Ms. Wheelchair Wisconsin who outraged others with muscular dystrophy because she could actually stand for ten or fifteen minutes on a good day. Judy Hoit, the treasurer of the organization stated, “you’ve got women who are in their wheelchairs all the time and they get offended if they see someone standing up.” This article is an example of people seeing themselves “as an oppressed minority, turning disability into a cultural and political identity…Thus, the now-deceased Christopher Reeve was severely criticized by some disabled advocates because he actively sought to `cure’ his paralysis rather than accept his disability.”

The article questions “what is disability?” and how we should react to it:

“Because my grandmother had German measles during her pregnancy, my mother was born with a malformed arm that ended in a claw-like appendage where most people have an elbow. At first, I didn’t know my mother was handicapped. She was just my mother: an attractive, smart woman who ultimately supported two young children after being widowed. It was the attitudes of other people [emphasis mine] that made me aware of her disability. Not that people expressed hostility or disgust; they were usually awkward, too helpful or furtive in their glances.”

McElroy summizes: “By my definition, disability is a sliding scale. How people react to `the disabled’ hinges on where that person falls on the scale. An extreme disability often makes people uncomfortable because it connects to their own fears of infirmity.”

Ayn Rand states that the solution to racism is Individualism: “`Rationality is man’s basic virtue, and his three fundamental values are: reason, purpose, self-esteem. Man – every man – is an end to himself, not a means to the ends of others; he must live for his own sake, neither sacrificing himself to others nor sacrificing others to himself; he must work for his rational self-interest, with the achievment of his own happiness as the highest moral purpose of his life.’ In this view, Objectivism rejects any form of altruism – the claim that morality consists in living for others or for society.”

It is here I have a difficulty in seeing myself as an “autism awareness advocate,” and understand the wisdom of 29 Marbles and This Mom for taking reprieve, in Brett’s case “trying to figure out what raising awareness means.” We all want to help -- philanthropy a kind-of business. By helping, do we assist our own conscience, or others need? The whole concept of religion is now at stake here, and I am thinking of Nietzsche’s anti-religious view – seeing altruism as a kind of farce, rooted in monotheistic religion. “As an esoteric moralist, Nietzsche aims at freeing higher human beings from their false consciousness about morality (their false belief that this morality is good for them), not at a transformation of society at large.”

You see, it’s an interesting exercise to determine where belief systems lie, to consider that none of us have any unique thoughts, and how alturism can be interpreted by those we are seeking to help and support.

I still like President Clinton's summation which, for me today, is an easy way out of this labrynth: we are just "people helping people.” I know I am trying to raise my son in a positive environment and accept him for who he is. I understand that I am a product of morals and ethics and build my actions on them, while studying the architecture of ideas. It is all I understand, for now, and the point from which this journey inititated.

LINK:

History of Racism

13 Comments:

Blogger Kristina Chew said...

Gnothi sauton--"know thyself," in the words of the Delphic oracle; I contrast this to that true lover of wisdom, Sokrates, who so frequently says "for I do not know" in Plato's philosophy. For me, the admission of how little I know---about autism, about whatever is really going on in the mind of Charlie (a mind which I am clued into via my observing his behaving), about the whatever around the world--is the beginning of starting truly to know.

12:57 PM  
Blogger Estee Klar-Wolfond said...

Indeed.

1:47 PM  
Blogger ballastexistenz said...

You said something about "the strong voices of the autistic community often condemning parents as abusers".

I want to be really clear on something (because I'm not sure if it's clear):

When I say that some parents abuse their autistic children -- I mean that some parents abuse their autistic children.

Statistically, it's impossible that it's not the case. Reading through books by autistic people, I see accounts of abuse at least as often as I see them described by non-autistic people.

Which is not to say all the time, all to the same degree, or that parents who abuse their children don't love them (some do, some don't, and the same is true even of parents who do not abuse their children).

What I find astounding is the idea frequently floating around the parent community, that the judgement of parents is above question.

Child abuse exists in families with non-autistic children, so it also exists in families with autistic children. And it is certainly a lapse in judgement.

So when I say that some parents are abusive, and some parents don't love their children (those are two separate things, although they can be related), I mean some, as opposed to the idea that none do. (The idea that none do is implicit in the idea that all parents of autistic children are making choices that should not be questioned or challenged.)

I hope that makes more sense.

9:41 PM  
Blogger Estee Klar-Wolfond said...

Yes, I understand your argument and agree entirely. What I wonder, however, is how the accusation, although correct, leaves new parents to the autism community a little unsteady. They are feeling vunerable, they are trying to do the best for their kids...not all can see through the words, even what is actually going on out there. I'm not saying to stop saying it. I'm just considering that some parents may be afraid to say anything -- the ones that may do ABA (even some of those parents are accused). There is another hotbed for ya! I like watered-down versions of things -- a mish mash of curriculae that work best for my son. He is doing well by it. I digress. I don't want to exclude parents who are just learning about all these issues while they're also trying to figure out how to best run their families and the nitty gritty of daily life with their kids.

My dilemma as I navigate this, trying to find "what raising autism awareness really means," is

1. How do I not alienate some parents simply "on the journey;"
2. How do we continue to raise awareness about how the autistic community feels about their autism;
3. Promote the unique capabilities of the autistic community;
4. Keep the focus on my son;
5. Keep the focus on humanity and justice in a positive manner without whitewashing former atrocities.

I could go on...I better stop now. I'm going to see Jonathan Lerman today...yeah!! Going to get some paintings for this October's show.

8:05 AM  
Blogger Estee Klar-Wolfond said...

Oh...and I also recognize that perhaps there is no answer...that the only thing that is certain is the ever-changing dynamic of this. But don't you think it's important to SAY what's on people's minds?

8:06 AM  
Blogger Kev said...

Establishing where the line lies between wanting to do 'the right thing' (in itself a subjective and cultural idea) and desiring the absolute best for one's kids is tricky beyond belief.

We're brought up to believe that anything thats diagnosed by a Doctor should be treatable and curable by default. Or rather that we have an inate right to treat it. Homosexuality used to be a medical diagnosis. The differences between races (and the petty justification of white society in opressing others) was seen in a medical context.

Advocacy to me has to start with the idea that - to be truly advocating - one has to address the desires and needs of the people that are represented as the beneficiaries of the advocacy. If all autistic people (or even the majority - possibly even a sizable percentage) saw autism as a medical issue that would be curable in an ideal world then it would behoove me to advocate for that too. As it is, the reverse is true. I have to advocate for that which people who are most similar to my daughter care about.

On a more personal level, I advocate (as do we all) for what I personally believe to be right. I believe that requires me to stand firm against generalisation and absolutism.

8:19 AM  
Anonymous Anonymous said...

"perhaps there is no answer..." we are all seekers though. there are no answers but we keep looking. there may some answers to some questions that may be posed but no one answer to the great all encompassing question.if we had the answers we could all live happily ever after but i have never met anyone who does, or ever will. life is a great challenge. always and forever. even on the good days.not a reason to give up though.

9:19 AM  
Blogger ballastexistenz said...

But... it's not an accusation at all.

An accusation of abuse is saying specifically that someone in particular is abusing their children.

Saying that statistically, some parents of autistic kids are abusive, is not an accusation. That's like saying that the statement "Child abuse exists" is an accusation. It's not, it's just a fact.

9:19 AM  
Blogger Estee Klar-Wolfond said...

Anonymous --

No, never a reason to give up, I agree.

Kev,

Yes, I tend to agree with you. As I've mentioned in this blog of mine, we need to make way for the voices of those with autism. These are the voices that guide me. These are the voices that I would like to be heard, so if I can in any way "make a stage" for them, that's what I'll do.

Ballastexitenz,

Everything you say is correct. I am not disputing any of it. I only ask myself the question how do we present these ideas to some people that close their ears immediately to certain presentations of argument. I'm not saying that shouldn't be made -- they must! Remember the sledgehammer and the song? We most definitely need both!!

I know that most people find the autistic basketball player story and Snowcake (although I've not seen the latter film yet), more "Hollywood cheese" -- framed within a context which initially presumes (I can only speak about the basketball story here), that autistic people are incapable, having beat the odds. Yet, isn't it a start? It has people talking, and perhaps listening -- ready to receive the "larger" messages.

Thanks for keeping this dialogue going,

Estee

Estee

3:32 PM  
Blogger not my blg said...

Estee, I prefer the sledgehammer because that fits my personality. I don't mind offending people's sensitivities when I see what is clear to me as injustice and bigotry. I'm the Malcolm X to other's Martin Luther King Jr. As you point out, both methods have their place. MLK doesn't fit my personality, but Malcolm sure does and I relate to him more than MLK. It might be the spectrum coming out in me but sometimes, particularly when it involves an injustice, I only see it in black and white. Perhaps my method opens the door for those with more deliberative arguments. Whereas I can portray the extreme, the more moderate might become more effective because no one wants the alternative (i.e. my style of confrontation). I'm the wrecking ball and others are the builders. Both are necessary.

7:04 PM  
Anonymous Ian Parker said...

Kev said:

“If all autistic people (or even the majority - possibly even a sizable percentage) saw autism as a medical issue that would be curable in an ideal world then it would behoove me to advocate for that too. As it is, the reverse is true.”

A couple of thoughts on this. First, I’m not sure where the evidence for this comes from? I’d suggest that internet blogging tends to attract – on any subject - a disproportionate number of people with strong views and/or who are highly motivated, which – if true – would not necessarily suggest that their opinions represent the predominant view on any issue. Kev’s point may or may not be true, but I wouldn’t want to cite as evidence a count of bloggers. I’m not sure how many bio-med parents blog, but if they represented a majority of blogs of parents of autistics would everyone then accept that they represented the view of a majority of ALL parents of autistics? I wouldn’t.

Second, I would suggest that over time people become comfortable with their conditions, both positive and negative, and – some more than others - define themselves by them. I’d suggest that we all do this – autistics and NTs, tall and short, thin and portly, good looking and the rest of us, etc. This is part of growing up, accepting ourselves as who we are, and growing comfortable in our own skins. But I’m not sure that the fact that many of us eventually achieve this level of comfort with ourselves necessarily implies that we or others should accept whatever condition we may have if improvement may be possible. If my daughter were deaf, should we not explore the possibility of cochlear implants, just because many adults who are deaf are comfortable with their condition?

At 2 years and 9 months old I highly doubt that my daughter knows what autism is. I doubt that she defines herself by it. I also don’t expect to “cure” her. That admittedly was our original goal, but both my wife and I like the idea that our child is different – my wife uses the word “quirky”, but she means it in an individualistic rather than a pejorative way. We still treat her, but for co-morbidities that appeared on very mainstream government-provided medical tests, and in response to deficiencies documented on these same tests. We don’t chelate, and as for Lupron, that is just nuts. If addressing her medical conditions (they’re definitely improving) also lessens some of the negative consequences of her autism then we will not see it as a bad thing. Yet she will still be autistic.

Third, regardless of how positively one sees an autism diagnosis, there are issues that come with it that we hope to lessen. Our daughter does IBI five mornings a week. Up front, the IBI program clearly told us that IBI would not make our daughter non-autistic. They do not sit and drill her at a desk (I’m not sure how one could do this with someone her age even if they wanted to). They do not use aversives, nor do they withhold anything from her or ration her. They do not stop her from stimming. They do not use food as a reinforcer (I’m waiting for Ms Clark to come out with a line of “I don’t work for M&Ms” t-shirts – we will buy one). They’re teaching her how to communicate, not by forcing her to speak – she is verbal, but with sounds only - but by teaching her to use PECS to make requests. She has taken to it very well. Enabling her to better communicate with others has caused her level of interaction with us and others - and not just to make requests but to socialize - to skyrocket. She even tries to use the PECS cards with other children in the IBI program. We see evidence not of frustration, but instead of a happy and increasingly adventurous child. We have yet to see a meltdown. We also do some OT and “speech” (more accurately “communications”) therapy, but these services are harder to secure.

We are quite willing to look at other alternatives, including more implicit learning (why would we not want the best for her?) but have yet to come across a way to implement this, except implicitly, as we are already doing for the rest of her day. So, while some may reject ABA/IBI, we see learning and progress, and wait (and wait) for a better alternative. We certainly don’t feel guilty, or feel that we are demeaning her. Instead, we are adding skills and capabilities that will enable her to become more independent, self-sufficient, and hopefully confident in her ability to make her way in the world. I’m assuming that she will do this as an autistic.

8:28 PM  
Blogger Zilari said...

Regarding the discussion here about abuse of autistic children: I interpret this as simply drawing attention to the fact that when encountering parents who are trying this or that "intervention" on their autistic child, one cannot immediately assume that the parent absolutely has their child's best interests at heart. This is not saying, in any way, shape, or form, that anyone involved in this discussion or even in this particular coterie of bloggers, is abusing their child. Nor is it saying that any sort of assumption is already being made -- it's just a caveat against making such assumptions, in case the situation comes up. It is saying that when one becomes aware of something that looks or sounds like child abuse, the fact that the child in question is autistic does not somehow make the parent less likely to actually be abusing their child.

One thing I can definitely say from the spectrum perspective is that I know that sometimes we are misinterpreted when we try to make a localized point about a particular thing, because people read too much into what is written or said. And again, I am not even saying that anyone here is reading too much into anything: it is just a caveat. When I say one thing is true, or that I think a particular thing, ALL that I am saying is that I think that particular thing. I am not saying that I don't think another particular thing: saying I like blueberries is NOT saying that I like them better than bananas, or that I hate bananas, or that blueberries are my favorite food. It's just a true statement, and a simple one, about the fact that I like blueberries. Nothing more or less should be read into it.

Hence, when I speak for myself about abuse and autistic children, I do think it is important to look objectively at every situation. Harm comes in many forms, not just physical and verbal and not just intentional. A child can also grow up feeling abused / unsafe if a parent simply doesn't know about sensory issues, etc. When I write in my blog, I try to explain things as clearly as possible from the "inside" so that perhaps someone who just can't figure out WHY their kid would "do things like that" might gain at least an opportunity to question their interpretation. I would say I am less the "sledgehammer" sort myself, but if I saw some clear and obvious evidence of abuse, the only hesitation I'd have in speaking out against it would come from a need to perform the necessary language-processing.

11:57 PM  
Blogger Kev said...

Ian - On the points you raised regarding my original comment: I can't disagree with you, I can only speak as I find. As I said, doing what one believes to be right is entirely subjective but it has been my experience of participating in a number of online groups and communities comprised mainly of people on the spectrum that the vast majority are not in favour of a cure.

I completely agree that this isn't anything more than a 'yardstick' approach but it speaks to my morals as well as my logic.

8:39 AM  

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