This post is for Blog Against Disablism Day; it’s about my experience as an able-bodied person who has a sibling with disabilities. I also have a cousin with disabilities and a parent with serious progressive cognitive impairment. I’m sure I could write a whole blog’s worth about growing up with my brother, but this is about my experience as an adult. Please check out the other Blog Against Disablism entries listed here.
My older brother (whom I’ll call M) is disabled. He’s five years older than me and thus has seemed to be both my big brother and, in a sense, my little brother, since the roles of who-cares-for-whom have been uncertain since before I can remember. He lives in a group home in the state where my parents live (one set of them, anyway), and I don’t get back there often, and most of my friends have never been there and thus have never met him. In fact, our own FJ, who has been my BFF since I was 14, has never met him! My networks of loved ones just haven’t crossed enough in that particular region of the country. What is strange about this, for me, is that it means that many of the people I interact with on a daily basis don’t know much about M, or they don’t remember much of what they do know. In general, though I’m on good terms with all my family members, including M, we just don’t have as much everyday interaction as we did when I was a kid. What this means for me is that I don’t have to “deal with” the way people react to M’s disabilities on a daily basis. I can turn off my defenses — or at least I think I can — most days. That’s a privilege that I have because I am able-bodied myself, but it’s a privilege I didn’t always have (or didn’t fully have) when I lived with M.
Usually, if M’s career, lifestyle, or health comes up in conversation, I’ll say straightforwardly that M is disabled and lives in a group home near my parents. I don’t know what people hear when I say this — what do they imagine? Do they picture someone with physical disabilities? Cognitive? Both? When I was growing up, people who hadn’t yet met him *always* asked if M had Down Syndrome; people reach for a label even if they don’t realize they’re doing it. (Though when I was a little kid, I imagine Life Goes On had something to do with it, too.) M’s disabilities have never been diagnosed as something recognizable; he’s got unusual physical features and unusual cognitive impairments. He’s also tremendously social, funny, polite, and complex, even if he can’t always communicate the complexity of his feelings.
What I’m writing towards, slowly and rather fumblingly, is that I “pass” as a person who doesn’t think about disability in my daily life. It’s actually a lot like being a queer/bi person in an opposite-sex relationship, or a thin FA blogger (hello, I’m Sweet Machine, and I’ll be straddling the liminal space between privilege and nonprivilege today!). People say things around me that they would feel (ideally) shame for saying around someone who “looked disabled.” They don’t think twice around me, though. Where this comes out most often (as American readers, at least, can imagine*) is with the word “retarded.” People say this word ALL THE TIME — you may think of it as a playground taunt, but really listen for it for, say, a week, if you don’t already. You will hear adults say it. You will hear all kinds of people whom you’d expect to be attentive to prejudicial language say it. You will hear variations on “tard”: fucktard, wanktard, and so on. You will hear it again and again, and you will hear it in conversations where no one will blink at its use. We’ve heard it here so often that we explicitly mention it in our comments policy. (Once you start to hear that, try listening for other slang phrases or common metaphors that focus on physical disability: lame, crippled, crutch.)
A few days ago, it went differently: I was having a bite to eat with a few friends and we were bitching about a professor and my friend G said “He’s just retarded.” I looked him straight in the eye and said, “I really don’t like it when people use that word like that” — while everyone else just stared at me, shocked, G apologized — and sincerely. In fact, he said, “I know, and I’m sorry. I’ve been trying to eliminate that word from my vocabulary, and I need to try harder.” I told him that I appreciated that, and after a short pause, the conversation went on.
I find this kind of interaction with friends tremendously nerve-wracking. I’m happy to call out strangers (as I’m sure you’ve noticed on this blog!), but it’s really hard to stop a lively conversation in its tracks to express your discomfort with someone’s words. It’s not just that I don’t want to make my friends feel bad — it’s that they’ve made me feel bad and they don’t even know it. And when I say “feel bad,” I don’t mean just a vague “Ooh I wish you hadn’t said that” itchy feeling. In the two seconds it takes someone to call something “retarded,” they’ve conjured up a lifetime of memories for me:
Memories of standing up for M against bullies on the school bus. Memories of being called “retarded” myself as retaliation and someone writing “SPED” in my high school yearbook. Memories of little kids chasing M around the playground and screaming “GET THE RETARD!” and a girl I thought was a friend coming up to me and saying “We’re chasing the retard, c’mon, it’s fun!” Memories of my mom filling out endless paperwork on which she had to write “moderately retarded” again and again.
That’s what happens in a flash in my brain when someone says “That’s retarded” and moves on. By the time I recover my nerve enough to say something, they don’t even remember what they’ve said.
Which is why I was so relieved when G did what he did — he apologized, and he really heard what I was saying. If only we could all respond with that kind of humility when we’re called out on privilege. I couldn’t stop thinking about that interaction, so I wrote him later to let him know:
I just wanted to say thanks for being cool about me calling you out on the “retarded” thing earlier. I really appreciate you taking that seriously and responding as you did. I know that we all work to not use prejudicial language in general, but it can be hard to change our speech patterns and I know some people don’t think it’s a big deal. I’m not sure how many people in the program know/remember that I have a brother who’s mentally disabled, but that fact makes me both more and less likely to speak up when I hear someone use “retarded” that way — more likely because I notice it more, but less likely because it causes a moment of anger/panic/sadness all wrapped into one, which makes it hard to actually vocalize what I’m thinking. It’s taken me over 20 years to be able to train myself to say something to people, but I’m still not that good at doing it, and every time I fail to speak up, I regret it.
Thanks for hearing what I said in the spirit it was given. It really means a lot to me.
I’m going to try to remember this the next time I have that moment of panic and anger. And I’m going to speak up again.
*Is “retarded” used as “generic negative slang word” in other countries, too? I have never heard anything about this either way.