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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

Sunday, May 13, 2007

 

Are We Blind?


I have a little something I’m working on for all the “autism moms” today, but it’s not quite ready – the reason I haven’t been blogging this week is largely because I have to figure out how to use a new MAC computer which I got for the purposes of making easier movies and presentations. Huh. I knew the salesperson made it look too easy. Anything that looks or seems easy, is never easy. My father was right.

What an interesting week it has been: I spoke at MIT this week and they will be loading my presentation into You Tube. I met Amanda Baggs there and Amanda is at MIT all week now. I commend Rosalind Picard and Rana Kaliouby for understanding the importance of adding autistics to their research teams. Rana said to me “knowing what we know now, we would teach this course differently.” In other words, with a growing understanding of the social and ethical issues surrounding autism (rather than the medicalized accounts of autism we are hearing much too often), they would not teach autism and technology out of the proverbial text books. What a breath of fresh air. Some people who actually care what autistics think. I asked other scientists in the room to consider the same, and to talk to Autism Speaks and like organizations about their marketing tactics that steam roll over the real issues, in other words, how autistic people (and parents like myself), feel about manipulating fear and despair for research funds.

And then my other mother’s day surprises: two articles in the New York Times today that are must-reads: Genetic Testing + Abortion = ??? and then in Sunday Styles an article on the disability community called Clearly, Frankly, Unabashedly Disabled: “This is who I am. If you have a problem with it, that’s your problem.” Are we finally entering an era (in the US anyway, as Canadian press are very lame so far in addressing the issues) of discussing prenatal screening and, uh, ethics? Consider Sarahlynn Lester’s comment, a thirty-two-year-old supporter of abortion rights, “I thought it would be morally wrong to have an abortion for a child that had a genetic disability.” In other words, it used to be “easy” to stand on the side of the pro choice movement. But now that technologies have made the stakes higher, our knowledge and control over life greater, the choice is not so easy. Do we have the right to choose between certain kinds of children?

“How much choice do you really want to give?” asks Arthur Caplan in the article who is chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “That’s the challenge of prenatal testing to pro-choicers.”


I’ve written about this many times. I went into that genetic counselor’s office when I was pregnant with Adam. I heard statistics and was confused. There was no way of knowing what life would be like if I had a child with a disability until I lived with it. And the fault is society – us. People with disabilities are the statistically highest minority group in the US today. Unlike other disabilities, however, autistics still do not receive the same consideration. While people may be listening somewhat to the Downs and other communities, we have a real problem in hearing out those with autism, largely due to ignorance about disability to begin with and then how that has proliferated organizations like Autism Speaks which spread fear and despair about autism, despite what people with autism have to say about their own disability.

The New York Times article on disability today says:

“The public image of people with disabilities has often hinged on the heroic or the tragic. But Mr. Blue [who has CP], 28, represents the broader portrait of disability now infusing television and film. This new, sometimes confrontational stance reflects the higher expectations among many members of the disabled population that they be treated as people who happen to have disability, rather than as people defined by disability.”


At the MIT lecture, a young man said that he could understand what it would be like to lose an arm, be deaf, be blind, but he couldn’t understand what it would be like to be autistic – that he couldn’t wrap his head around it. I think what most of us are lacking, in this autism debate, clearly, is a theory-of-mind. Indeed, it is not the autistic who are “mind-blind,” but rather, the rest of us who are blind to the community, the words, and the real lives of those who tell us everyday, what it is like to be autistic in our society.

6 Comments:

Blogger kristina said...

Happy Mother's Day, Estée! Best wishes to you and yours,

9:12 AM  
Blogger Moggy the Autie said...

Sad thing is, it's not just non-autistic people that can't imagine being autistic. I see it a lot among autistic people as well -- the ones that can 'pass' as a damaged non-autie section off anyone that can't, and their thinking towards those individuals parallels what we see in NTs.

They're also still not listening to people born with rare physical disabilities like mine, either. A good friend that has cerebral palsy, Book Girl, has some posts up that make it painfully clear those with CP aren't much better off. From one post I just read in the latest Disability Blog Carnival, those of us that aren't amputees almost never manage to imagine what it's like.

The disability-abortion debate is taking place in other articles, too -- I found these good pieces recently:

http://www.aapd-dc.org/News/disability/abortdebate.html
http://seattlepi.nwsource.com/opinion/232776_focus17.html
(those two are versions of the same, I think)

http://serendip.brynmawr.edu/biology/b103/f00/web2/obaray2.html
(A surprisingly good high school biology paper on the ethics of genetic testing & aborting disabled fetuses)

3:48 PM  
Anonymous -Brian Henson- said...

The New York Times article was quoted:

“The public image of people with disabilities has often hinged on the heroic or the tragic. But Mr. Blue [who has CP], 28, represents the broader portrait of disability now infusing television and film. This new, sometimes confrontational stance reflects the higher expectations among many members of the disabled population that they be treated as people who happen to have disability, rather than as people defined by disability.”

This seems to be the debate, both forefront for many years, and behind the scenes, --the question of whether a person "has" autism, or is "autistic".

It was Ellen Notbohm who wrote in South Florida Parenting, under "Ten Things Every Child With Autism Wishes You Knew":
"I am a child with autism. I am not 'autistic.' My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?"

On the other hand, Jim Sinclair wrote in "Why I dislike 'person first' language":
"I am not a 'person with autism.' I am an autistic person."
He goes on to give three reasons why he dislikes "person with autism", the first one being:
"Saying 'person with autism' suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still...the same person. ...autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works."

However, from the New York Times article, Mr. Blue requests that members of the disabled population "be treated as people who happen to have a disability, rather than people defined by a disability".

Indeed, do autistics "have" a disability known as "autism"?

This seems to be making the understanding of autism and other conditions far more complicated than it needs to be; and to get more understanding and awareness of autism to the public, this confusion of terminologies must be gradually diffused and a clearer picture made of what autism is, and what autistics are all about...

7:00 PM  
Blogger Zaecus Celestis said...

"to get more understanding and awareness of autism to the public, this confusion of terminologies must be gradually diffused"

I've heard good points on both sides of the issue and generally been a little bemused that people who think they're arguing over an issue (rights/acceptance) actually aren't in this case.

Basically, they're both right about the reasons to use the particular terminology they choose to use.

Those who want to use "person with _____" are trying to distance themselves from the negative stereotypes and value judgments applied to whatever follows "with".

Those who use "_____ person" are trying to distance a quality they consider intrinsic to their existence from the negative stereotypes and judgments applied to it.

"Person with femaleness" might seem a very bizarre turn of phrase (that I have seen and heard used, and used myself) for this discussion, but there were, and still may be, those feminists who wish to distance themselves from negative associations that come with the tag "woman". They did it with alternate terms, but the issue is largely the some; some women change the way they are described, and some try to change what that description means to society.

Ultimately, though it might still be irritating in some way, most of the autistics I've seen don't get all that upset over any particular phrase being used, -until- it is being used specifically on them. I read about people with autism all the time, just like I read about people with typical neurology, but I -am- autistic, specifically an autistic man.

I would object to someone distancing autism from me specifically the same way I would object to someone distancing my maleness from me through their use of language.

When in doubt, asking seems like the best choice, with accepting correction being second. I'm still amazed at how often someone doesn't ask, doesn't accept the correction, and gets upset at the very idea that someone might have a particular preference about how they choose to be referenced.

3:00 AM  
Anonymous -Brian Henson- said...

That's the problem--each and every person has his/her own preference, just like Jim Sinclair did, and just like Ellen Notbohm,the mother of the autistic child did. It's the same, I'm sure, with those in other categories, like those who prefer to be called "diabetic", and those who prefer to be labelled as "having diabetes".

The problem is that some are making it a "given", that the adjective "autistic" means that it is intristic, whereas the term "having autism" is extrinsic, but those stating this as a given are not able to state where their given, itself, came from, and therefore, not able to provide details of how it came to pass.

This makes it easy for individuals on the spectrum but hard for the general public to comprehend whether a person should be proud that he or she deems his autism to be extrinsic, or whether him/her being an autistic is intrinsic and a way to describe that person, as opposed to seeing the conditions as just part of that person.

When the New York Times article stated that it was a "new, sometimes confrontational stance" in that these people with disability wanted to "be treated as people who happen to have a disability, rather than as people defined by a disability", was the aim to make the disability more extrinsic to the individual than intrinsic to the individual?

How would parents of a two-year old, just diagnosed with autism look upon the condition--intrinsic (as Jim Sinclair referred to in the term "hard-wired"), or extrinsic (as Mr. Blue referred to it as being in the New York Times article)? After all, these parents are not the ones being diagosed--it is their offspring that has the diagnosis, and the dual standard of approach is causing much divisiveness in society as a whole.

12:25 PM  
Blogger Zaecus Celestis said...

It's not a dual standard but a dual function adjective.

For gender, we have 'male' and 'masculine'. For neurology, we only have autistic.

It is possible for someone to be both defined by their gender and be a person with qualities independent of gender. The same is true of neurology.

5:35 AM  

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