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:
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.
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.