The Thin Line Between Desirable and Dehumanizing

Published January 21, 2009 @ 11:16AM PT

a line of buoys makes a dividing line in the water Two news articles celebrated the accomplishments of Aspergers folks. Asperger's Syndrome isn't keeping Megan Woods out of the limelight from the Grand Forks Herald is about a high school girl with a talent for singing. Newport Aspergers man takes care of business from the South Wales Argus is about a man who started a new coach service. One thing these articles have in common is that they highlight accomplishments. Points for desirable! The other thing these articles have in common is that they talk about the accomplishments in terms of overcoming AS, or in spite of AS. Points for dehumanizing?

I was reminded (ah yes the joys of highly associative thought processes!) of the essay "Inspiration" by Cal Montgomery. In the essay, Cal dissects this complex issue of being called "inspirational" or "overcoming disability" when in fact all one is doing is being a human being living their life just like everyone else. How what truly must be "overcome" (like prejudice and lack of access) is often not acknowledged while praise is heaped for things that are no big deal. And how ultimately dehumanizing such things can become.

Why is it that when an autistic person accomplishes something so often it is labeled "overcoming the condition?" Can an autistic person (or any person with a disability) just simply accomplish something as a person? I did not "overcome autism" to write this article. I did "overcome barriers to accessibility" in order to do things like succeed at the interview for this job, but my skills as a writer are simply my skills as a writer. These skills may have been developed in some ways by idiosyncrasies related to my autism, like since writing is my primary means of communication I exercise that skill more than many people do (and on the less desirable side I may also leave out or get wrong words that aren't very concrete like "the" or "of"). But for the most part, my writing skills come from learning, practice, natural ability, personal interest, past professional experience, etc. Just like anyone.

I love seeing positive things written about people on the spectrum. It's so, so very important to praise strengths and not see people as nothing but a pile of "deficits." All people need to have their accomplishments acknowledged! But I think it's equally important to remember not everything an autistic person does is related to their autism. Making too much of a fuss about "overcoming" disability can, as Cal's essay addresses (and I have also experienced), cross a line and become dehumanizing.

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Comments (11)

Thank you so much for making this important point. I hate it when people act like everything good my son does is "despite" his autism. Hey people, he's a smart, cool, funny kid. That's just the way he is!

I also hate it when people act like I'm some kind of saint for parenting him (and his NT younger brother) as a single person. They are my children and I love them and I'm really just doing my job.

Posted by Karen D on 01/21/2009 @ 01:55PM PT
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As a person on the spectrum who also happens to be profoundly deaf and multiracial (which at one time was not as cool as it is now), it has been an uphill battle to overcome what was once a strong need to be accepted. Living comes from within and peace comes from acceptance. Deciding to live life without prejudice and bias is empowering. Learning to look within for truth rather than outside is also a powerful choice. Perhaps public amazement at success in the "disabled" population lies more with the astonishment of watching the building blocks of mistaken labels, views, and ideas topple.

Posted by Elesia Ashkenazy on 01/21/2009 @ 02:45PM PT
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@Elesia Ashkenazy, you said "Perhaps public amazement at success in the "disabled" population lies more with the astonishment of watching the building blocks of mistaken labels, views, and ideas topple." That's a really fascinating idea to me (and beautifully stated). Thanks for sharing it, I'm thinking about a lot of new things now that I hadn't before and that is always exciting to me!

Posted by Dora Raymaker on 01/21/2009 @ 04:04PM PT
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I think the author, and Elsie make wonderful points. We do often cross the line it seems to dehumanizing when people are getting over the limitations their own lives have taught them to acknowledge.

Posted by Malka Maxwell on 01/21/2009 @ 04:10PM PT
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@Karen D, Thank you for your comment. It had not occurred to me before that parents are put in the same position, but that is definitely the case. We are all "in the same boat" on this one. Thanks again for your perspective.

Posted by Dora Raymaker on 01/21/2009 @ 04:13PM PT
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My 6-year-old son was diagnosed with autism just after he turned two. He had been able to identify letters and alphabetize his set of ABC books since he was 20 months old. The professionals referred to this as a "splinter skill." I remember thinking, "Why isn't it just a skill?"

Four and a half years later, he has proven time and time again that he may have this thing someone has called autism, but so what. I've learned to push him along where he needs it (getting himself dressed, for example) and get out of his way in the many areas he does not (he's currently teaching himself Spanish and addition, subtraction, multiplication, & division all at once.)

At the time when we received his initial diagnosis, I remember getting the sense that his future was very limited. When I finally began meeting teens and adults on the spectrum, the panic I'd been feeling that I had to "intervene" and "early" left me and I realized that he was going to be just fine. What he needed from me was what any child needs: to be loved unconditionally, to be cheered-on in his pursuits, and to be supported in areas that were hard for him. In practice, this may look different than it would with a "NT" child, but in every important way, it is just the same.

This seems to me to be a civil rights struggle similar to so many that have come before. It's about changing perceptions, demanding respect and equal opportunity, and celebrating our own (in my case, my son's own) wonderfulness. I think forums like this where people with autism just speak for themselves will be one of the most important parts of this movement. And I'm inspired by the recent victory in the long struggle for racial equality, to have faith that this struggle will ultimately be won, as well. Thanks for writing, Dora. I'll continue to read and learn from your words.

Posted by Rebecca Billings on 01/21/2009 @ 06:40PM PT
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@Rebecca Billings, thanks so much for your comment--I started smiling when I read "Why isn't it just a skill?" and smiled all the way through the rest. I too have been inspired by the recent victory. And inspired by your words :-) I'm so glad to hear things are going well for you and your son!

Posted by Dora Raymaker on 01/21/2009 @ 06:51PM PT
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I've always felt very uncomfortable, disturbed, maybe even a bit frightened, when people talk about what an inspiration someone is. But also at some people who do not want to see autism disappear from the world, but whose reasons are, for example:

- 'They' are so precious. ("You can just see 'they' enjoy life so much deeper [than whoever])

- 'They' are put here so that others can learn / so that their parents can grow as people.
(note, not that there is anything wrong with growing as a person by learning from others, including your own children, but when it's cited as the reason for your being it's just plain creepy)

And I'm also very disturbed when people say stuff like 'special' children are only given to special parents, who know how to care for them better than the average person (sometimes God is presented as the one who hands these kids out and picks the special parents or something).
And when 'special' children are referred to as angels or saints.

This post reminded me of all of these things. It is incredibly difficult for me to try and explain why these things disturb me so (it's just one of those things that exist without words in my head and it can be amazingly difficult to try and build words around it), but I think your post (Dora) manages to put it into words for me, at least in part or at least for some of the issues I mentioned.

Posted by Norah vd Stel on 01/22/2009 @ 05:10AM PT
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@Norah vd Stel, I relate to what you write. I too get really uncomfortable about those sorts of things, but did not know how to explain. How do you tell someone, "your praise makes me feel terrible?" That essay by Cal Montgomery I linked to in the post (I read it for the first time a few years ago) was the thing that helped me to figure out how to communicate the "why" of my discomfort.

Posted by Dora Raymaker on 01/22/2009 @ 09:44AM PT
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I never heard of autism or Asperger's until I was in my 60s. In some ways, I'm very glad that I didn't know, growing up, that I was on the spectrum. Out of necessity, I learned to adapt to or work around my problems, many of which are not exclusive to Asperger's. I don't feel that I've "overcome" anything, and would certainly resent being held up as an inspiring example, as if having Asperger's was more important in my life than my innate talents and my acquired skills.

Posted by Sylvie Mac on 01/23/2009 @ 08:19AM PT
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@Sylvie Mac, thank you for your comment and your perspective. The idea of one's autism or Aspergers being held up as more important than ones talents of skills (one's personhood) is exactly the issue here.

Posted by Dora Raymaker on 01/23/2009 @ 10:48AM PT
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.