When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on. I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.
I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.
Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.
And so I was confronted with the question I’d been avoiding: am I disabled?
Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:
- woman
- wife
- mother
- entrepreneur
From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.
Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.
As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.
So, yes, I’m autistic and proudly so.
But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:
A physical or mental condition that limits a person’s movements, senses, or activities.
Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.
Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.
There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.
Well, on most days I wouldn’t.
But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.
Do other people see me as disabled?
Undoubtedly some do.
Maybe the real question is, does this bother me?
I guess it does, on some level. Would I be writing about it if I didn’t?
I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.
So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.
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some related posts by other bloggers about labels, how we identify and the significance of language:
- “Autistic” or “Person With Autism”: Who Decides?
- The Significance of Semantics: Person-First Language: Why It Matters (plus a long list of related links to other articles at the bottom of this article)
- Functioning Labels, Again
- The Politics of Coming Out
- Autism, Acceptance And Love
- Person-first language doesn’t put people first, it makes them invisible
- Panel Event on Disability and Inclusion in the Humanities
- My Diagnosis Story part 2: Discovery and Understanding
- To the Committee on Oversight and Government Reform: Autism and Reframing Tragedy
I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.
Musings of an Aspie 
I think that definition could and does describe a lot of people who are both neurotypical as well as physically able. There are many, many people I know who are neurotypical and physically able who have personal issues that limit them in many ways. They might get therapy and some medication, but they are not considered disabled. I don’t necessarily think the label “disabled” is a bad thing, just that it is subjective as to what society sees and had decided is disabled. It is something to think about that a neurotypical can go through their whole life making destructive choices or any number of things, but only be labeled as having poor self esteem or whatever, while someone with ASD is “disabled.” There are pros and cons to both situations. I also think the fact that it isn’t considered “curable” factors into it. Though really, when I look at all the grown women who are faking neurotypical-ness well enough to pass, it’s interesting that that isn’t factored in as well.
You raise a lot of great points. I find myself being able to argue the pros and cons of both sides, too. The idea that autism (or any disability) is something we can’t fundamentally change about ourselves feels like an important piece of the puzzle. People who screw up their lives by making destructive choices would probably (in most cases?) be able to stop doing so. Then again, I’ve developed all sorts of coping mechanisms and adaptations that make me less “obviously” (even finding the right language to talk about this feels tortuous) disabled. It’s very much a muddle for me.
Interestingly enough, in Canada at least, both severe allergies (like my sister had at one time, fatally allergic to peanuts) and mood disorders like depression fall under the category of “disabilities”. So does alcoholism, I believe (it at least falls under the category of “mental health”, along with all other addictions). But yes, I agree that there’s a lot of negative connotations to the word.
*thinks* Like musingsofanaspie… I can see both sides. My third post in my new blog was about my inability to make decisions, especially when I can see more than one side to the issue, because I can’t weigh the differences.
“Something we can’t fundamentally change about ourselves”? Interesting idea. But note that that would include certain people with risky behaviours; they’ve found that addictive personalities have a genetic factor. My mother has always been careful with alcohol because of that, since my grandfather was alcoholic. And adolescents often present risky behaviours because that is how their brain works. The judgement part of the brain isn’t fully developed until sometime around the age of 25. (Some are more mature earlier, due to experience or perhaps having the judgement part of their brains developing early, but that’s still the “general” age at which it happens.)
I *really* don’t know. There are just so many different opinions and options… it’s confusing. And confusing and I don’t get along too well….
😉 tagAught
It’s very perplexing. I’ve moved a bit in the direction of not wanting to label myself disabled but I still have nothing conclusive enough to actually write about. It feels like this is a subject best left to people who know more about it than I do.
Just wanted to add, the link you posted to my blog, Emma’s hope book, Labels – Autism is from over a year ago and was something I very much believed and felt at the time. Since then, however, I have come to see things very differently. My daughter is Autistic. I no longer say “she has autism.” I also see that post as a perspective I’ve happily shed and while there is still some truth to what I wrote, it is not a post I entirely agree with, nor would I write it today. At this point in my life I just hope I continue to evolve.
Shall I strike it from the record then? 🙂
The links are posts that I encountered in my reading and that I found thought provoking. However, I don’t want to misrepresent you! My own thinking is constantly evolving and I’m sure I could go back even a couple of months to find that I’ve written things I no longer agree with. This is a constant learning process.
Also, if you have something that represents your current views, I’d be happy to give it a read and add it so others can too. I very much enjoy your perspective on all things autism.
If you wouldn’t mind, take a look at this one –
I’ve never gone through my blog and systematically deleted posts from the past, though I have thought about it, but this link is certainly a better representation of my current thinking… 😀
Thank you for the rec. I’d read that one before and have updated my post to include it in place of the older one.
I think letting things stand as they are isn’t a bad idea. When I first found your blog, one of the things that struck me most was how much you’d changed in your thinking over the years.
Consulting with the ‘Disability Liaison Unit’ at uni was the shittiest feeling. Why the segregation I ask? Why is the DLU separate from the Welfare Unit? Why are the books about Autism separate from the other non-fiction topics hmmmmm?
Disability is only a concept that others when people use it to segregate.
That’s a very good point about the context in which othering occurs. I’ve been thinking a lot about the difference between labels we apply to ourselves and those others apply to us. How one can be empowering while the other can be diminishing.
Thanks so much Musings. This topic can’t be written about enough. As with anything, the only way we will really be able to change perceptions is through the repetition of an alternate idea.
Hannah – I never thought about how my daughter was so obviously being segregated, until recently. But she is. Everyday she goes to school in a special education, segregated school and classroom “for her own good.”
Ariane I would love to hear more about that. Inclusive education is my main area of interest (as a teacher still waiting for (hopeful) acceptance to Masters program). Have you got a post about it somewhere? ox
I’d love to hear more about your feelings on the idea of segregation/inclusiveness as well. If you haven’t written something in the past, perhaps you will?
Yes! Okay. Tomorrow’s post… I’ll try to tackle it. Thanks for the encouragement!
Yay! I’ll keep an eye out for it. 🙂
Not to take anything away from the discussion, but I began reading this particular article because my aspie grandson has always been fascinated with labels. He would read every label on his clothes and every sign from a wet floor warning to an ‘in case of fire’ PULL. That one had an interesting result as at 3 he wasn’t tall enough to read the first part and felt compelled to comply with the PULL instruction. We were at a hotel in Houston, TX…and yes, the fire dept did arrive–they were very nice and understood. BTW he has never felt compelled to pull a fire alarm since. (Now even at 7 the PUSH on an ice machine is still tempting) 🙂
It’s funny that you say he reads everything because I always have and still do. I’ll even read the label on the ketchup bottle in a restaurant or the complete text of every ad in view on the subway. I’m not sure if it’s because reading has always been a special interest and so it’s comforting or because text is information, which I tend to crave to help me sort out the world around me.
Whatever the case, it’s served me well. We could have worse habits!
Yes, I agree. My daughter sent me a photo taken at the tree farm while they were picking out a tree. In every photo he is smiling–holding an ad for Toys R Us–while the other kids were enamored with the tree. We have never used gameboys etc. to occupy him–just whatever he can read. What are your thoughts on a Kindle Fire reader for him? I am considering it as a Christmas gift–one for big sis too who is 10 and an avid reader as well.
That’s adorable about the Toys R Us ad. He sounds like quite a cool little guy.
Your question sent me off to research Kindles. I have an older generation model and don’t know much about the newer ones. After some reading, it looks like the Fire has build in parental controls so I’d say yeah, if he loves to read, what could be better than something you can fill up with books?
Yes, he is a charmer alright. I think he began reading around 2…was fascinated with my cookbooks–funny since he only eats about 4 things. At a recent hotel stay he read the phone book! Thanks for the info on the ereaders. I am sure he will love it. Hopefully his Mama will be able to introduce it in a manner that will not be too difficult to separate him from it–he has compulsions to ‘finish’ and has to be negotiated. 🙂 He is okay if we draw the perimeters BEFORE starting something. (The fall out from NOT preparing is a bit much)
Thanks again.
Oh, yes, I read everything as well. If I’m not doing something else, I’ll read signs on buses, I’ll read ads, I’ll read menus… doesn’t matter, I’ll read it. (Which is irritating at times, because who really *wants* to read ads? Not me!) So I’ve now got my Kobo Mini e-Reader in my purse (as well as my smartphone) so I’ve never *not* got something to do. (I know, double negative, but necessary to convey what I’m trying to say….)
😉 tagAught
Reblogged this on and commented:
Every once in a while, I think this is the third or fifth time, my finger lingers above a/ the reblog button, and especially in the twilight zone, as it is now, I dare to continue, I think for the second time. I will Smartti
efy this in a couple of hours, to do it just.
The young people here at my place label other young people who act or look strange as autistic. And those guys don’t even have a shred of knowledge on what autism really is. It’s a really bad stereotype here in my place.
My grandson at 7 has decided he just has “Odd Duck Syndrome” and you either love and embrace him or reject his as –let me get this right–“a lad whose spoiling has gone on too long to reverse” My daughter and I have both faced backlash for how we choose to rear him…but he is happy and healthy–knows he is unique and embraces it.
Yes, sadly, “autistic” has become a slur, much like the “R” word. There’s a lot of ignorance in the world.
Disabled: a person who is made less able by insurmountable barriers that would be nothing to a non-disabled person. Examples: a wheelchair user unable to get into a building because of steps, or an Autistic person who has to avoid certain areas because of meltdowns triggered by a beatboxer using an amplifier.
Do you like my definition any better? Of course, I go in for the social adapted model of disability. That is, I have characteristics that make me inherently disabled, but once I’ve adopted the coping mechanisms available to me (sunglasses, headphones, etc.), it’s up to others to meet me the rest of the way. If they won’t, then they have disabled me.