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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

Monday, November 26, 2007

 

Why CBS Has Got Autism Wrong

I was forwarded a report on adults with autism on CBS (in the autistic realm, many people prefer to be called autistic adults -- but the preference differs among individuals).

Why does this CBS report have autism pegged all wrong? What does it show in the way society lacks understanding about disability?

I feel like going back a bit in history. In 1987, Reagan on George Bush's recommendation named Evan Kemp Jr. a commissioner to the Equal Employment Opportunity Commission. The US federal C. Boyden Gray, says Joseph Shapiro in his book No Pity: People With Disabilities Forging a New Civil Rights Movement, had opened Bush's eyes -- noting that disabled people were seeking self-empowerment. Gray was not disabled but "he had an instinctive understanding of the fight for self-worth..." Gray was a southerner who attended Harvard, and "he found that his northern classmates automatically assumed he and all Southerners were bigots, rednecks and stupid....'The stereotype was that you spoke with a Southern accent, so you've got to be dumb.' Gray empathized with the desires of disabled people to overcome low expectations and their distaste for being stereotyped...

During the negotiations over Section 504, David Stockman's Office of Management and Budget drafted a new White House position that applied a cost-benefit analysis to proposed disability benefits. To the bean counters at OMB, it seemed sensible. The less a disabled person -- and presumably the more likely that person was to work and live independently -- the more help and rights he or she got. The more disabled someone was, the less he or she was guaranteed. When Kemp [himself a paraplegic] confronted Gray with a leaked copy of the OMB memo, Gray agonized. Kemp, after all, was severely disabled. And Gray knew he could not justify a position that would put a price tag or a cost effectiveness formula on his friend's worth. The proposal was killed." (pp.123-4).

It was perhaps this that lead Gray to understand the meaning of a civil rights bill for people with disabilities. "He [referring to Kemp] reached out to explain the experience of disability, not to scream at me."

"Kemp took the Bush campaign. Three months later, Bush pledged 'I'm going to do whatever it takes to make sure the disabled are included in the mainstream.' Those simple seventeen words, spoken during Bush's image-turning acceptance speech at the Republican National Convention, marked the first time that an American Presidential nominee had acknowledged disabled people as a political force... for several years Bush pollster Robert Teeter presciently had advised his political clients that disabled people and their families were growing into an untapped community...

Later, at the polling firm of Louis Harris and Associates, Louis Genevie, was proving [this] instinct correct. [He] was tracking the voting preferences of disabled voters." They swung markedly to Bush. "Genevie wrote to Bush that disabled voters who had switched to bush had constituted up to one-half of the four million difference of popular votes between Bush and Dukakis. This made up one to three percentage points of bush's seven-point margin of victory....his polling did not even count family members who could be equally strong activists."

"A candidate ignores the issues of disabled people at his own peril," Genevie would later say.

Now let me see, it is said that there are between 40-50 million disabled people in the US today. That is not counting people who become disabled as a result of disease -- many with Parkinsons and Cancer reporting the added stigma in society and the workplace as a result of their diagnosis. If we included that number, Shapiro estimates back in 1991, that that would have accounted for 120 million disabled Americans.

What has happened? Few people are aware of these events, despite their significance for millions of disabled people. Non disabled citizens ignore them. Disabled people, while they have protested on Capitol Hill, cannot do so in large numbers, despite the large numbers of disabled people out there, so it doesn't make headline news. Together, blind, deaf, epileptic, autistic and other disabled people have come together for one cause -- access as a civil right, and to foster a greater understanding and acceptance of disability as an norm of humanity.

So what is wrong with the CBS report? Many things. It perpetuates crisis and fear -- the oncoming "burden" of the many children currently diagnosed with autism.

While it suggests that many adult autistic people CAN contribute to society, it still fosters the fear of autistic people -- their financial burden on the rest of us without viewing their contributions. It sits like a bounty over the heads of autistic individuals.

"To what extent do we have a duty to accommodate?" I often get asked. To me that's like saying to what extent must we allow African Americans into our society? Without speaking to the people where the issues reside, we can never grasp the meaning of exclusion, and will only fear what we have to give up. Of course that fear is often unfounded and based on a false perception.

What is especially traumatic is that despite the headway made in our history by millions of people, Allison Tepper Singer still gets the soapbox -- and makes others worry along with her -- thereby continuing to create fear and despair. The same issues are present in my family, and in many families that come our way. Adam's siblings may have to watch out for him one day. Instead of it being a burden, we try to foster it as just a way of life -- a way of life that in our history would have been obligatory and not seen as a burden in this era of egocentric individualism.

Isn't it is also disturbing that the young man folding towels was not being paid anything at all, for all work should be compensated -- even for work in training. What is most fearful is the creation and continuation of a caste system based on disability -- or the presumption that ALL our autistic kids will be able to do is fold towels and stock shelves. Of course, we know that that isn't always the case, and while there is nothing wrong with sweeping the floors, let us not limit the opportunities and possibilities for many autistic children who will soon become adults.

And speaking of work, how can disabled people get to work if they are not equipped to at least begin to pay for public transit? How can they get to their first job interviews without financial support to launch them? And what happened to a truly inclusive society with the special transit that must be booked well in advance and does not always allow non disabled people to travel with them on special transit?

Our attitudes are the burden for autistic people that keeps them at bay.

The only way to really understand what autistic people are confronted with everyday is to talk to them -- those who have to spell out a sentence letter by letter, slowly. Or those who rarely talk or get to talk at all as well as to those who also have never talked as young children but can talk today. CBS didn't talk to autistic people. They only spoke to an Autism Speak's spokesperson who likes to spread fear instead of qualifying concerns and reframing lives in order to empower caregivers. The mother knew her son could contribute -- I, for one, would have liked to have heard a bit more from her. Yet, it's not just the service system that needs improving, it's our attitudes. As in the history of disability rights, autistic people must help run the systems that seek to assist the autistic children who will one day become the adults.

George Bush said, "'Let the shameful wall of exclusion finally come tumbling down.' He put his pen to the bill. Then Bush turned to Evan Kemp, who was sitting next to him on the podium overlooking the Washington Monument, and gave him an affectionate kiss on the head.

Bush's administration would promptly issue regulations for the ADA. There would be no four-year fight like that over Section 504. The law took effect in 1992. Many companies, particularly large ones, complied eagerly and reaped the rewards -- new customers, new workers, and good publicity. Passage of the ADA was an earthshaking event for disabled people. It signaled radical transformation in the way they saw themselves -- as a minority that now had rights to challenge its exclusion. But it was an odd victory; as radical as the ADA's passage would be for disabled people, non disabled Americans still had little understanding that this group now demanded rights, not pity." (Shapiro, pp. 140-141).

If there is any crisis that CBS reports, it should note the crisis of misunderstanding, intolerance and continued stereotyping. As Susan Goodman, President of CSAAC noted, "Because people with autism are the most difficult to serve, they are the first to be written off." (Shapiro, p. 144).She suggests that because of this, the autistic are the most segregated of all.

Presidential nominees might also take into account the numbers of disabled and autistic adults living in our society today -- valid, valuable and lo and behold -- voters.

14 Comments:

Anonymous chaoticidealism said...

Good article. Just one gripe; you seem to be more annoyed at an emphasis on less-important matters, rather than an actual "getting it wrong" (inaccurate statements, etc.)... so the title's a bit off. Other than that, yeah. I agree--the prejudice and misinformation is the Big Deal that really holds us back.

3:02 PM  
Blogger Patrick said...

Well, at least elder Bush "tried." Though I have heard of many judicial decisions that rendered the original ADA quite useless. And I also find it a bit condescending "gave him an affectionate kiss on the head."

Oh looky... I'm the big president and I'm showing some Public Relations symbolism to the poor crip here.

Where are our support services for Autistic (and other semi-disabled) Adults at now? Nearly non-existent.

3:39 PM  
Blogger Estee Klar-Wolfond said...

I took that in the same fashion -- that "kiss on the head," although Shapiro gave no judgment on it.

Chaotic Ideas --

as for the title, yes it's about how misinformation and missing the point gets constantly perpetuated as FACT in the media. CBS's recent report on autistic adults was a recent case in point.

I gladly invite new suggestions on better titles. :)

3:50 PM  
Anonymous DJ said...

I also tire from this constant barrage of "crisis" and "burden" rhetoric when it comes to Autism. I'm a 32 year old autistic who has been working and paying taxes since the age of 13. An oddball I may be, but I do contribute a heck of a lot through my volunteer work as well as my career and university training. I really don't like being portrayed as a burden to society because I am autistic.

My point in the examples below is to show that everyone is a burden on society to some degree. To maintain the life of any person on this planet, young or old, costs money.

Aren't all people "clogging up the system" somehow, in their own way?

* How many healthcare dollars are spent on the health of people in general? How many people in the USA and other countries are paying for their own healthcare? Every time someone goes to the doctor, someone is paying for it. In Canada, it's the taxpayers. In the USA, it's the person/parent/caregiver/etc. who foots the bill.

* How much money is spent taking care of people with diabetes, heart disease, high cholesterol, cancer, migraines, Alzheimer's, etc.?

* In Canada, every parent of a child gets a certain amount of money per child per month. I don't have kids, I do not plan to have kids, yet my taxes I pay through my work are paying for these folks to get money every month.

* The taxes I pay on my house are paying for local kids to go to school, even though I will never be sending a child to school. I have no choice but to pay it.

Having kids costs money anyway - autistic or otherwise!

* My tax money goes to maintaining roads and such in cities that people use to drive on.

Then one can look at personal expenses:

* How much does the average person spend on self care? (Toiletries, food, clothing, etc.)

* How much does it cost to house any person? It's costing me over $1500.00 a month to pay my mortgage and that's not including bills, food and such! If I wasn't paying this myself, someone else likely would be.

* How much does the parent of an average, non-autistic child spend on that child in a lifetime? (Food, clothing, medical, entertainment (computers, videogames, etc.), schooling, and extracurricular stuff like sports or lessons)

It all adds up in my opinion, and I don't see why societies have to focus so much on the "burden" of autism and less on our quality of life. Does that not matter to them?

I hardly see that sort of negative press about burdens press coming from diabates, cancer, Downs syndrome or any other society focused on a particular health issue.

I have yet to see "Diabetes is a terrible burden which costs society a lot of money." They tend to focus on quality of life for the diabetic. I just finished collecting money for the diabetes campaign and nowhere in our literature does it say Diabetics are a burden on society.

Downs Syndrome can be pretty debilitating, sometimes even more than autism, and many of them will require long term care. However, the ads that their societies put up are positive.

For example: The Down Syndrome Association in the UK ( http://www.downs-syndrome.org.uk/) has a website that says "Challenging Discrimination" "Creating Understanding" "Providing Information"

The Canadian Down Syndrome Society says in their awareness week article: "Celebrate a Canada that Includes Me" ( http://www.cdss.ca/site/news/print_articles/2007_11_01_CDSS_GAM_AD.pdf)

Why is it not the case with autism?

Why can we not celebrate a Canada which includes us?

Why are we such a "burden" while societies for other things are raising money to help improve quality of life for people and not make them feel ashamed of themselves?

Why must we be raised to be ashamed of ourselves?

Why must societies shame us in public this way?

How is that helping anyone?

Attitudes really need to change, in my opinion, before any positive change can take effect.

To be honest, I'll be glad when Autism's 15 minutes of infamy are up...

4:05 PM  
Blogger abfh said...

it is said that there are between 40-50 million disabled people in the US today. That is not counting people who become disabled as a result of disease -- many with Parkinsons and Cancer reporting the added stigma in society and the workplace as a result of their diagnosis. If we included that number, Shapiro estimates back in 1991, that that would have accounted for 120 million disabled Americans.

120 million is an amazing statistic. When one considers all of the new disability categories that have been added or greatly expanded since 1991, it seems likely that those of us who are considered to be disabled and therefore abnormal now constitute more than half the population.

"Normality" is nothing but a smoke-and-mirrors illusion,and it's past time to get rid of it.

4:05 PM  
Anonymous -Brian- said...

quoting abfh:

"'Normality' is nothing but a smoke-and-mirrors illusion,and it's past time to get rid of it."

It's not the definition, per se, that is the problem; it's the enforcement of "normality" in all areas of society (mostly for, what I would call, the god of "security). For example, can a pupil wander around a classroom during an exam? The answer, for security purposes, is "no." Can a person speak to a judge in a court of law whenever that person wants to? Again, the answer is "no". That, to many people, is the "normal" wany of behaving in those situations--abiding by the principles and policies of the "group" that one is interacting with, and anyone who does not abide by the "normal" method (eg. those who just get up at any moment in the classroom during an exam) are considered "abnormal" by these "standards". Likewise, anyone who speaks to a judge in a court of law whenever he or she wants to is often more than considered "abnormal"--that person is often chastised or fined for contempt of court.

If there was ever a way for a person to challenge the "normal" principles and policies in every area of society/culture on all counts, without being considered a criminal/danger or others/burden on society, I (as an autistic adult) would be the first to welcome such a venue. In the meantime, when a police officer pulls me over along a road, I have to behave "normally"...no matter how much of a "smoke-and-mirrors illusion" it really is, unfortunately...

8:16 PM  
Blogger codeman38 said...

Incidentally, the link to the video in your post appears to be broken; not sure if it worked originally, but there's an underscore at the end of the URL that shouldn't be there.

11:04 PM  
Anonymous Elissa said...

Until people start to think 'selflessly' instead of 'selfishly' nothing will change. DJ is right - until attitudes change, nothing else will!

Does anyone not stop to think that some of the world's most significant breakthroughs (that we take for granted every day!) have come from people who in all likelihood had 'autistic' tendencies?

A burden? Those of you who stand in judgement - open your eyes!

4:24 AM  
Blogger Suzanne said...

codeman38, thanks for helping me find the CBS clip.

10:10 AM  
Blogger abfh said...

Brian: I have to disagree with your view that the enforcement of normality is "mostly" for security. Although security procedures have become stricter in recent years because of concerns about terrorism, I believe that most of the insistence on behaving "normally" is just old-fashioned bigotry.

If you go for a job interview and don't get an offer because the interviewer doesn't like your voice or your body language, that has nothing to do with security; it's because managers are more comfortable hiring their own kind, just as with race or gender.

As for students who can't sit still long enough to take an exam, a school system that was more willing to accept diversity would provide alternative ways to measure their knowledge, rather than insisting that everyone must take conventional exams.

11:20 AM  
Blogger codeman38 said...

Oh, also, regarding this part: "And speaking of work, how can disabled people get to work if they are not equipped to at least begin to pay for public transit?"

...Worse yet, what if transit doesn't even go to people's homes, or to the job sites they need to reach? This is the case in some parts of the town in which I'm living right now-- even the transit service for the disabled will not run beyond a certain distance from the fixed bus routes, which already do not cover the entirety of town. What of people who live or work in such locations, who are completely unable to go where they need to even if they can afford the bus fare?

And the privately-owned alternatives aren't much better. Taxi fares are about four times as expensive as bus fares, and the taxi companies here are notorious for either not running on time, not showing up, or in some cases, not even answering their phone lines.

2:20 PM  
Anonymous -Brian- said...

abfh wrote...

abfh, I have to disagree with you as to the meaning of the word "security". That word was in the English language for centuries before 9-11, and that original "security" is the same as in the court examples that I stated.

Even there, an autistic adult would not, again, I repeat, for security purposes of the court, speak to the judge or move about the courtroom at will. I suggest to you that if you know of anyone in a court of law who is autistic (even falsely accused) to do what he or she wants to at any time within a court of law, and see just what happens for this "abnormal" behaviour.

Anyone can state that people "should" have the right to behave the way they "want" to, but, as I stated, there are many "normal" things that we are all bound by, like driving on the right side of the road. For any autistic to feel that this "normal" behaviour of drivers is just an "illusion" and ignore this "normal" practice is,
on most roads, leading that driver and others into a potential disaster.

Whether it's in schools, on roads, or in courts, one cannot just revert to "anarchy" and ignore all "rules" because they might be considered "normal"...without the consequences of such actions.

If school boards can abolish the need for conventional exams, the transport regulators can abolish the need for speed limits (like on the autobahn in Germany)...and see the results on every street and road within their jurisdiction.

4:43 PM  
Blogger abfh said...

Brian wrote:

abfh, I have to disagree with you as to the meaning of the word "security"

Yes, we do seem to be using the word to mean different things. I was referring to matters of safety and preventing crime (or, in the case of the kid wandering around during an exam, preventing cheating).

Not talking out of turn in a courtroom has to do with showing respect for the judge's authority. In the United States, a person who spoke involuntarily in court because of a neurological condition (such as a witness who had Tourette's) would not be punished for doing so, assuming that the judge was aware of his or her condition.

I think you misunderstood my original statement if you took it as an argument against all rules whatsoever. I was using the word "normality" to refer to the modern-day caste system that separates the population into "normal people" and "abnormal people." It is, of course, possible to maintain an orderly society with reasonable traffic laws, etc., without stigmatizing millions of people as second-class citizens.

6:57 PM  
Anonymous -Brian- said...

abfh wrote:

"I think you misunderstood my original statement..."

That's where the meaning of words and semantics can (and does) cause irreparable damage in human interaction, even in one language.

What you referred to as "normality" was in reference to "normal people" vs. "abnormal people", whereas, I was referring to "normal practices" in schools, on roads, and in court rooms, as opposed to "abnormal practices" in those places.

Even when it comes to finances, there is a modern-day caste system that separates the rich from the poor (the world over), and it is possible to have an environmentally-friendly world without stigmatizine millions of poor people as second-class citizens, too.

Unfortunately, stigmatization, whether it be for disabilities or for lack of financial assets, is a "normal" practice in most areas of society, and will take more than just a change of attitude to reduce, let alone remove.

Even the chief justice of the Supreme Court of Canada said this season that most Canadians do not have adaquate access to the justice system, mostly due to finances, and this is just a minor example of the prevailing stymatization of many in society.

That's why I, as an autistic, could not believe in "labels", as a label on a person gives the impression of whether or not that person is "first-class" or "second-class" (as all "prime ministers" in Canada are always considered "first-class" even by those who vehemently oppose them).

10:12 PM  

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