Labels

By Michael Daellenbach 

 

When I think about the labels used to describe me and other members of my community, I am hurt. It’s easy to call someone else “disabled,” but to label oneself thusly can in itself feel disabling. Personally, I find the label of “disability” to be harmful and insulting, so I will stick to the word “neurodiverse” or “neurominority” when describing people who exist outside of societal definitions as to what constitutes “normalcy” in terms of ways of thinking and cognitive function. Similarly, I will abstain from the word “normal,” which has an innate connotation of superiority, and will instead use the word “neurotypical.” Also, it should be noted that I believe that the use of the word “ableism” is problematic because it implies that the people who are discriminated against due to “ableist” dogma are not able and thus disabled. I also omit the pejoratives “syndrome” and “disorder” when referring to someone’s diagnosis, as these words pathologize neurodiversity.

My experience regarding neurodiversity is a personal one. I am an Aspie; I have an Asperger’s diagnosis. For those who are unfamiliar, Asperger’s is a diagnosis on the autism spectrum which entails poor hand-eye coordination, high intelligence, and different patterns of thinking regarding social interactions. Just as no two neurotypicals are the same, no two Aspies are the same, either.   Personally, I am horrible at sports. As an example, I have never learned to dribble a basketball while moving at any speed greater than a slow walk, despite my efforts to speed up to overcome the mocking of my peers in PE classes. With regards to intelligence, I always grasped material before my elementary school compatriots, I can memorize and recall more vocabulary words than my friends who went through the same Spanish classes as me in high school, and, a la Weird Al, I do calculus just for fun.

The most debilitating aspect of my diagnosis has been the social aspect. It’s not just that I’m bad at being social. It is true that I am often inhibited by my lack of understanding of what to do in relationships, particularly long- term relationships.  The worst part, though, is that I have been taught from a young age that my emotions are not valid and that I can only succeed in life by trying to mask my personality.  It’s not that I’m bad at being social, it’s that I’m “bad at being social.” Because of my diagnosis, I was pulled out of class every week to learn how to “fit in” from sixth grade until ninth grade, when I rebelled against having an Individualized Education Plan  (IEP) to avoid the high school’s patronizing Speech Language Pathologist (SLP).  I spent those years learning how to make small talk and facial expressions.  I won’t lie and say that the meetings were never helpful.  For the first year, they were.  I became more cognizant of my outward appearance in a way that allowed my to improve my social interactions without pathologizing my identity.

After that, though, my SLP, who was like a therapist to me, was replaced by a man who didn’t see me for who I was. From that point onward, I wasn’t a person; I was a label.  I wasn’t a lovably quirky Aspie anymore; I was a victim of Asperger’s Syndrome who needed fixing. Instead of being attuned to my unique needs, which were subtle yet present, I was put into the “freaks and geeks” group, where I was told to role play examples of exaggeratedly poor social interactions, such as invading people’s personal space by leaning over them. In high school, it got worse.  The SLP there, instead of trying to understand my needs, decided to test me by having me verbally define a multi-page list of idioms which included expressions such as “It’s raining cats and dogs.” Even after it became readily apparent that this was entirely underwhelming, she persisted in having me define all of these phrases.  This infuriates me because the whole point of our meetings was to have curriculum and discussions that were tailored to my needs, not the needs of someone she thought I must be.  Because I had a diagnosis, she didn’t see me for who I was, a highly capable youth who occasionally needed to work out the kinks of how to interact with others.

The ramifications of my “repairment” went beyond the annoyance of being treated like an imbecile.  They were also deeply emotionally scarring. Because of all of the years of others trying to fix me, I learned that I needed to be fixed. I tried to change myself in harmful ways. I decided that the only way I could overcome ostracism was to become “normal,” so I rejected the  “weirdo” friends who accepted me for who I was and tried to make friends with the  “popular” people instead.   

Needless to say, this didn’t work out well for me. It wasn’t until I learned to accept myself for who I was that I began to feel whole as a human. I had to relearn what it was to be me, to do things because they made me happy and not because they were “normal” or what I was “supposed” to do.

Reading this article, many people are probably thinking something along the lines of, “Curse those oppressive ableists.” Well, yeah, the professionals in my past acted in a way that was detrimental to my mental health. However, that doesn’t mean that they are the only problem here.  The social justice community as well could stand to update its vocabulary regarding neurominorities.  Here are my two cents about how to be a better ally:

          • Don’t put labels on other people.  For example, don’t assume that people consider themselves disabled just because you do.  If you want to respect people, you need to adopt the language that they use to describe themselves. This      applies to other communities as well.  For example, some people within the trans* community are very opposed to the word “transsexual” while others embrace it.  Instead of assuming that one individualuses the same language as another, observe or ask about a person’s preferred language.

         • Don’t try to speak for someone you’re not.  The obvious example of this in the autism community is Autism Speaks.  You may have seen their  “Learn the Signs” billboards.   The organization claims to speak for autistic people.  It says it there in the name, Autism Speaks. This angers people in the autism community because Autism Speaks has no autistic people on their board of directors and, rather than try to address the needs of the community, pathologizes autism by seeking to prevent and cure it.  Let me be clear: I do not need curing.  I do not wish that I had been aborted.   Obviously, a true ally to the neurodiversity community would not be seeking to cure us. With minorities in general– and neurominorities in particular–it can be easy for people who are trying to be allies to attempt to speak for the community. A well- intentioned objection to the use of words like “retarded” as insults is great, but that doesn’t mean that you are qualified to speak at great length to the oppression faced by neurominorities, just as men can be allies to the feminist community but aren’t the right people to give education seminars about feminism.

        • Educate yourself. Don’t just take my word for it.   Follow blogs and read books by people in the community, especially people who are neurodiverse themselves.

I’m not saying that disability doesn’t exist. It does. But when society as a whole dictates who is disabled and who isn’t on an individual level, it doesn’t realize the impact that this has on the individuals at hand. I, for one, am not disabled.  Although my way of thinking at times causes me problems it is also crucial to who I am and to my assets as a person. And really, who isn’t at times challenged because of their innate personality, regardless of whether they are neurotypical or a neurominority?

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