I hate talking about disability with people outside our community. Especially people I respect. Especially for the first time.
I think this is similar to what Ta-Nehisi Coates called “The John Mayer Rule.” He called it that because he was posting in the wake of some profoundly vulgar remarks by that singer.
But then he went on to discuss his concern, as an African-American professional, about drinking with allegedly-enlightened white colleagues: after a few drinks, someone would say something ignorant that would reveal them to have a layer of racism you wish you didn’t know about.
Coates gave two examples, from two perspectives. First, he explained, he would often skip after-work gatherings at his first job for “fear of being the only black guy [and] fear that someone would get smashed, say something ignorant and I’d do something that would get me fired.” But his second example came from the opposite perspective.
I had a dinner party when I first moved to Harlem with a bunch of friends. One of my homeboys was dating a mutual friend, who happened to be Korean. Anyway, after dinner someone pulls out blunt, rolls up and we all partake. One of my other friends, who was black, goes “Damn dude, your eyes are all chinky.” I laughed like nothing had happened. It never even occurred to me what had happened, until the young lady called both of us on it.
That was the end of the party–in more ways then one. What I was left thinking about was the power dynamic, and the trust factor. She was in an apartment surrounded by black people who she trusted were fairly enlightened. As it turned out, some us weren’t. Would she not be justified with her own John Mayer rule?
There is a disability equivalent of the “drinking with white people” problem: listening to someone you respect — outside the community — talk about disability for the first time.
The most striking example I recall — both because of its egregiousness and because I was new to the community* — was Hillary Clinton’s speech on what must have been the third anniversary of the ADA. There was a big event on the White House lawn and Tim and I worked at a Big Law Firm that frequently had spare tickets to random high-profile political events, which they would give away to associates. Of course, the high-profile ADA event tickets went to the lone disabled lawyer and his fiancée. So Tim and I were sitting there on the White House lawn surrounded by amazing people (whose amazingness I would not appreciate until years later), when the First Lady stepped up to speak. And the theme of her address — to the collected disability rights royalty — was that if we provide sufficient funding for medical research, there won’t BE any disabled people! (I’m doing this from memory — let’s see if the Internets have the actual address. Nope. Sorry. We’re stuck with my July-in-DC-heat-addled memory.)
Anyway, this is why I never, ever, even for a nanosecond thought of voting for Hillary Clinton. I’m confident with the right advisors, she eventually said more enlightened things about disability. But deep down inside, to her, it’s a problem to be cured, not a natural part of the human spectrum to be embraced. And she wasn’t even drunk.
On a more personal, no-drinking-with-white-people level, I have often had the experience of listening to a friend — or someone I know less well but (want to) respect — start talking about disability, only to hear something so ignorant I want to hit the rewind button. And then the delete key.
Like the time a woman we had recently met asked to bring her son to meet Tim. Career advice? Male bonding? No, the son had gotten a traffic ticket and she wanted to show her son “what could happen if he continues to drive recklessly.” I was actually confused for a second, then realized that she was planning to simply exhibit Tim to her son as example of the horrible fate he would face if he continued his careless ways.
(Of course, I only sputtered, rather than saying, “you’d like to show your son a Stanford law school grad who co-founded a successful civil rights practice as an example of a horrible fate? What would be the positive role model, Larry the Cable Guy?”)
Then there was the presentation I gave to a roomful of trial lawyers — supposed to be the good guys, right? — who were shocked and then angry to learn that they, too, had a legal obligation to make their offices accessible and hire sign language interpreters for deaf clients.
Another time a friend explained in some detail what a pain in the ass it was to make facilities accessible.
And then there are just the garden variety off-hand comments or usages:
“I sprained my ankle once — now I really appreciate what it’s like to be disabled.”
“That’s so retarded.”
“It’s so amazing that she’s out and about” or its close relative “she’s so inspirational.” It sounds like praise, but it contains an assumption of incompetence as the default setting and no matter how well-intentioned, automatically distances the person from “the mainstream,” whatever the hell that is.
I don’t, per Coates, actually avoid drinking with people outside the community — and the experiences above show that people don’t need alcohol to say dumb things about disability — but I do have fairly sensitive antennae and have learned when to start steering the conversation quickly in another direction.
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* I was almost completely ignorant of disability rights issues until I started dating Tim. And God knows, I’m fully capable — in fact, expert — at saying stupid things. I also have to acknowledge my own weird position here — I’m not disabled. Hence the use of the vague word “community.”
I was at the same ADA event with Hilary Clinton – unfortunately, you got it right. Yes – she did actually say that if there was sufficient funding, there wouldn’t be people with disabilities (or some such nonsense). I remember a profound silence after that comment – hopefully, someone enlightened her. We had a quite a discussion today about how my husband is not “inspirational” (especially at home!) but a mere mortal like the rest of us. Great article – thanks.
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I find this problem to extend to any semi-informal group with a similar purpose. When my goddaughter Rosa was 2, we would go to this fabulous indoor toddler activity center. The access was great for both of us (I use a wheelchair and Rosa has only one eye). She would run nonstop for the 2 hours we stayed. We went there every Friday morning for over a year.
The adults, many of whom were stay-at-home moms, sought conversations with adults. From the beginning I brought a book. I’d read one paragraph, look up and check on the kid, then read another paragraph. I did not want to engage in a discussion of why we were different races, or what was “wrong” with either of us.
In that entire year, I never had one positive conversation that included either of our disabilities. Mostly people tried to hide their curiosity until I seemed relaxed then they made their ignorant statement.
I wanted to talk to the adults, to brag about my great goddaughter. But they all wanted to talk about how different we were. Luckily Rosa ignored the adults and I followed her lead.
This all happened in Berkeley where disabled people have been a visible part of the community since the early 1970s. But too often I find that when people get into groups of presumed similarity (like parents in a play area), they feel free to comment on any difference that is present. And since my cute (and large) body in an electric wheelchair does not fit into their world view, they want to share their discomfort with platitudes and unwelcome comments.
For the next kid I took to the play area, I added headphones.
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Ah, yes. Then there was the work situation in which a colleague (whom I had previously liked and respected) used the phrase, “Jew him down.” Then she looked at me and said, “Oh, I guess I shouldn’t say that, should I?” The subtext, however, was clearly, “I guess I shouldn’t say that around you, should I?”
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Well, this blog just about made me cry. I’ve been in these situations many times but I could never have expressed my feelings as well as Amy has. Thank you.
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Robin – So *you* were one of the amazing people whose amazingness I only came to know later! How funny that you were there, and thanks for confirming my recollection.
Corbett – After Carrie adopted Heather, we talked about printing tee-shirts with the international “No” symbol — red circle with slash — over the words “stupid questions.” I should go ahead & print them — probably a good side business!
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