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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

Friday, August 31, 2007


"Stigma Hurts!": Do We Only Have It Half Right?

I have to admit that oftentimes, I wonder what's not to "get" about de-stigmatizing autism. I mean, it's something that we seem to "get" in many other disabilities and mental "illness." We hear the word de-stigmatize a lot these days in terms of depression, bipolar disorder and today in the Globe and Mail, about mental illness. But the rhetorical landscape remains confusing.

Even with "illness," I am compelled to put it into quotation marks because mental illness might be relative, maybe sometimes subjective. Who deems another "mentally ill," after all? Was Vincent Van Gogh "mentally ill?" Or was he an individual who lived with schizophrenia, who heard voices in his ear so that he cut it off? Or was he just Vincent, living with the egomaniac Gauguin and after their fight, cut off the mere tip of his ear to get the argument out of his head? A shocking gesture, perhaps, and not unlike some other eccentric artists I have come across who have mutilated themselves (I am not going to judge here) -- for life, as some say, can imitate or even BE art. Still, Van Gogh, because he was so very eccentric, also thought himself mad and checked himself into a mental hospital towards the end of his life. Would he have if others had accepted him as he was? And yet, such intensity also came with his gift, his contribution to society in the way of his art. Art, like no other during his time. Art, that changed the way others viewed the world by way of his evolutionary brush strokes.

Quality of life is impacted when one lives with stigma and exclusion. The stigma lends itself to exclusion -- from jobs, from schools, from communities. The disabled say that their ability or dis-ability is effected by the way society understands and accomodates the disability. So it is wise to tread carefully as attributions of "mentally ill" might be social ones -- others might accuse us of being sick" or "ill" or "not normal" or "genetic abnormalities," like many do of autistic individuals, and the individual is neither delusional nor ill at all. So, as I applaud the fact that many Canadians are on the path to de-stigmatizing depression, schizophrenia and the like, I pause. Have we only got it half right? Are we still de-stigmatizing with one caveat: sure, we'll not stigmatize you as long as you get yourself recovered. Because as long as we truly keep ourselves in the dark, as long as we refuse to try and understand, we will continue to marginalize and make assumptions about others who are different.

Margaret Trudeau now advocates for the de-stigmatization of Mood Disorders. On their website, the homepage reads "Stigma Hurts!." It reads:

"Stigma has been defined as: Prejudice based on stereotypes, resulting in discrimination (Corrigan & Lundin, 2001). While public attitude towards some mental illnesses seems to be softening surveys also reveal that people with serious mental illness and addictions are seen to: lack intelligence, are lazy, morally reprehensible, violent and dangerous, have nothing to contribute to society and are unable to recover. People are routinely denied employment, access to health care, housing, insurance and mortgages. Discrimination denies full citizenship and equal rights.

It is this diminished view which allows individuals, communities, institutions and government to accept a reduced social and economic status for people with these conditions than we would accept for oneself. As a consequence stigma and discrimination towards people with mental illness, neurological conditions and addictions is under researched and poorly understood. There are no systems of surveillance in place to monitor the levels or changes in the degree of stigma and discrimination experienced within the general population.[i] We know that stigma is not experienced equally across all cultures, by all consumers or consistently across ones progress towards recovery.

A component of recovery includes rejecting self-stigma, and combating the negative attitudes and discriminatory practices through public education and advocacy. Studies of the magnitude and nature of stigma need to account for both the disease- specific and culture-specific aspects of stigma. However, little research has been done to identify those factors which protect people from the harmful effect of stigma or that promote a healthy progression toward acceptance."

Now off to the Mental Health Commission lead by former senator Michael Kirby. On that homepage, Kirby states:

"I look forward to the day when we can say that we live in a country that has put an end to the stigmatization of mental illness and has eliminated discrimination against people living with mental illness; to the day when we can say that we have put in place a truly seamless continuum of care across the lifespan that allows people living with mental illness to find their individual road to recovery."

Not all individuals feel they have anything to recover from when it comes to disability and I am also referring to autism when I am referring to disability. It is not a denial of the obstacles one can face with a particular disability. It is about where the pressure lies in terms of conforming. What and who "needs to change?" When de-stigmatizing something, we have to believe that there is nothing to recover from. In place of this notion, we might need to consider replacing "recovery" with "accepting and accomodating." We may have to put the type of assistance and education into the hands of the individual -- "self-determination" as it is often referred to. Further, one's quality of life is based on an individual's acceptance by others in their community, and this acceptance can lead to self-acceptance. It means that we treat others with equality and with sensitivity to their individual needs. It means that we learn to understand the issue or disability in order to learn how to educate autistic individuals and others with special needs in our schools.

The idea of acceptance is fundamental. Realizing what is reality for many individuals who have had to live in denial or suppression of their "way of being" has been, and continues to be, much more damaging.

We have to learn how to learn about autism rather than how we tend to ascribe it the other way around. We often say that autistic people need to "learn how to learn." Yet, we have to recognize what we mean by that. It means that "they have to learn how WE learn," while ignoring the fact that autistics learn in an autistic way. Autistic people learn. How can we learn how to teach them? Where is the two way street in special ed?

After speaking with many in the world of disability, a world that seems to be quickly becoming my own as I traverse it with Adam, the word "assistance" when it comes to autism seems much more appropriate -- "merging help with respect," say Norman Kunc and Emma Van Der Klift in their outstanding paper Hell Bent on Helping.

With so much money going into genetics research rather than research that seeks to understand autism and help autistics live rich lives with autism, we do not know how to teach, employ and interact or accomodate because our minds are on the goal of preventing, curing and recovering (can we say "saving") autistic people, literally, from themselves. Do we have this right? Or is our responsibility to learn and merge that teaching with respect for how autistics learn so that we learn to function in society with disabled people contributing to it?

We know that some individuals have more challenges than others and the levels of assistance differ. But as I continue to read the rhetoric, even if it seems positive and the goal is to achieve a world that de-stigmatizes the individual with either autism, another disability or mental illness, I scratch my head and wonder how the rhetoric will be used: to provide more fuel to the people who want to "recover" others, and change individuals so that they are "normal," or to provide the supports and assistance to enable people to live freely and comfortably in society as they are? In other words, do we value the individual who lives with the mental illness or disability, or do we value them ONLY when they recover or come as close to "recovery" as they can get?

As the Down Syndrome Society includes in its site this article from The Chronicle Herald:
Down syndrome: rights doomed by the media

"Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are
included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard....

In Canada, this is not a heartening time to have Down syndrome....

The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat."

It comes down to value. It strikes me as odd, in a world that values "diversity," that people can sometimes stare at Adam strangely, which shows that he is not valued (or understood as understanding leads to valuing) that much by others. Instead, if they have heard anything about autism, they may stare at him with fascination and label him under their breath. It is with a strong resolve that I choose to ignore those scrutinizing glances, even if I notice it, for Adam's sake. It is with the same resolve that I question society's use of rhetoric so that his value is never undermined.


Anonymous mcewen said...

I'm often tempted to jump on my soap box so that I can rant and rave at the unfairness of it all. [or fall off and have a hissy fit on the floor]

But I think that general public opinion is also a spectrum: know nothing, not interested and couldn't give a hoot, or knows everything there is to know and can't get enough of it and then there's the huge middle ground of open minded sensible people.

We 'just' need to work towards achieving a greater overlap of both spectra.

Cheers dears

11:19 AM  
Blogger Steve D said...

This is an excellent, poignant discussion of values and stigma. Thanks, Estee.

1:43 PM  
Blogger laurentius rex said...

Vinnie, brilliant artist though he was also drunk a lot of absinthe and maybe had syphilis (the 19th century equivalent of aids which decimated artistic circles) neither of which are good for the brain.

Quite simply we cannot put modern disorders onto Vincent, the times were different.

In 100 years time if Civilisation survives, you can bet that we will all be retro diagnosed with whatever is in vogue to be.

Vincent cut of his ear cos he had voices, that is the daftest thing I ever herd, I still have both my ears even though they assail me with tinnitus.

3:05 PM  
Blogger Estee Klar-Wolfond said...

Tinnitus -- I believe my dad likely had the same. He used to always complain of ringing in his ears Turned out he was ultra sensitive to noise so much so that he now has to wear a hearing aid. His acute hearing eventually caused him to lose his hearing quite a bit in one ear.

Actually, how Vinnie heard voices is debatable. I took a special course in art history with a Van Gogh specialist in university. All of the possibilities were discussed.

7:00 PM  
Blogger Estee Klar-Wolfond said...


P.S. -- retro diagnosed -- that's a good term. For sure, there will be a dx du jour. It would be fun speculating what those would be. ;-)

7:02 PM  
Blogger Estee Klar-Wolfond said...


I like to think that the open minded "middle" is in the majority. All that needs to happen is more education about understanding autism/disability and how we live life well enough, thanks very much.

7:03 PM  
Anonymous said...

I am astounded to have found you all! I feel like the lone autism mommy in my circle; in part, because my son is my joy, as is his (normal) brother. And we have managed to fashion a very normal life. But the social exclusions (some bold and bald), academic and developmental competitions, unwillingness to socialize publicly, etc. here in LA are quite isolating. Image and status are everything. Even within the autism community, which is relatively segregated. "The Joy of Autism". A home at last!

8:50 PM  
Blogger Estee Klar-Wolfond said...

Is it Leah? Glad to meet you.

6:20 AM  
Anonymous farmwifetwo said...

IMO the stigma extends to the medical profession. I am trying to get a new Ped. My eldest is on meds and my Dr isn't comfortable with them and the old one wishes to retire.

Simple, eh?? No.

The excuses "he doesn't know what services are offered in my "world"". #1 - I don't need help with that and #2 - all the services are in HIS corner.. hence trying to get a Dr there.

The next - "well there's a new ped coming to (my corner) and has a good rep".. NEW??? Therefore he knows NOTHING of what's offered here.

Why not just say you don't want a child with ASD?? Oh... that's illegal and discriminatory....

That was my 5:15pm Fri night call from my Family Dr. I'm screwed until Tues.

Stigma extends even into those that should know better...


9:45 AM  
Anonymous ..Brian Henson.. said...

It was the question: "Who deems another 'mentally ill'. after all?", that brought back to mind the writings of Thomas Szasz in the mid-twentieth century. He wrote an essay (and a book with the same title): The Myth of Mental Illness. An outline of his essay can be found at:

He argues that there is no such thing as "mental illness", even though his career was in psychiatry. It's the conception of mental illness that's in question, as there is no "physical" way to describe this "phenomena" any more than "witchcraft", "daemonic possession" or other concepts were seen in historical times. It's like we need to "retro-diagnose" ourselves to see all the "misconceptions" (including "mental illness") that we have formulated and defended with such intensity for so many decades...only to keep those who are "different" in behaviour at bay from those who are "normal".

In the conclusion to the essay, Thomas Szasz states:

"Our adversaries are not demons, witches, fate, or mental illness. We have no enemy whom we can fight, exorcise, or dispel by 'cure.' What we do have are problems in living -- whether these be biologic, economic, political, or sociopsychological."

Yes, autistics cannot be helped by "finding a cure", or even by classifying autistics as "mentally ill", but by acknowledging and solving the problems associated with autism, especially the sociopsychological problems of modern society in the 21st century.

10:02 AM  
Blogger Estee Klar-Wolfond said...

Thanks, Brian. I am definitely going to check out that essay.

11:09 AM  
Blogger LAA and Family said...

I admire your ability to gather your thoughts and clearly discuss them in meaningful ways. These are things I think about but could probably never organize so nicely in a written or verbal discussion.

What you discuss here regarding "the two way street in special education" is relevant in my household in something I came to realize this past school year with my son's work. I started the year out determined to get my son to "learn the things he was sent home." By the end of the year I was more interested in FIGURING OUT WHAT HE WAS ABLE TO DEMONSTRATE HE HAD LEARNED (ie, figuring out what was relevant to him) in the material he was presented. I feel like I had some success with this recently with a book we read and a "test" I had him take. I feel like I have a much better sense of what is relevant to him and where he is at academically. His teachers at school were much too slow in trying to figure this out, and really only took steps towards doing so when I approached them about it.

6:46 AM  

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