March 24, 2008

What would/do you do: Stupid disability-related conversations

(Note from M.E.: I'm posting this at the request of another Quenchista who's requested more than the usual level of anonymity. Just for a little bit of background, the original author is the partner of a person with a disability; this post discusses two types of conversations about disability that the author typically has with third parties. Everything after I close these parentheses will be the words of the post's original author. I think it's really interesting and thought-provoking; so I hope you enjoy and contribute!)

I want to preface this with my understanding that people aren’t given tools or practice talking about disability in positive or transformative ways, or even in humanizing ways.

Conversation type 1: In which I’m in a good mood and I indulge your questions:

Supposedly well-meaning Person (SWMP): Is his disability genetic?

Me: Yes

SWMP: Is there a cure?

Me: Not yet.

SWMP: So if you have kids… Like… You know… So if you have kids…

Me: We aren’t really interested in kids.

SWMP: But if you did..

Me: Yes?

SWMP: You know…

Me: No?

SWMP: Would they… have… that… gene?

Me: If one has kids in the traditional two partners and their egg and sperm way, then there is genetic material from both people.

SWMP: So then how can you plan to stay with him the rest of your life?

Conversation type 2: When I’m not in a good mood (probably too many type 1 conversations):

SWMP: Is his disability genetic?

Me: Why do you want to know?

SWMP: Well, you know, just if, well, you know, will your kids…

Me: Be nerds? If we have them, probably yes, since we are both nerds.

SWMP: That’s not what I meant.

Me: Oh? What did you mean?

SWMP: About the… you know… the disability?

Me: We are not having this conversation. You might want to think about what you are implying when you bring up this topic in this way.

SWMP: Well, I know that you and X think that disability should be something that is open and that people can talk about. I think that it’s anti-intellectual that you insist we can’t have this conversation.

Here are some comments that I have for these SWMPs. What would you add? With what do you disagree?

  1. You do not have some unique insight to recognize that something genetic passes down to children. It’s not rocket science. In fact, as you probably might guess if you thought us to be at least as intelligent as third graders, that this is something we had already talked about.

  2. Your implication that the worst tragedy in the world would be for someone to exist that has a quality in common with a person I love is hurtful and offensive.

  3. Even if there is some possibility that we may have kids at some point in the future, please don’t discount families that don’t have kids by assuming everyone plans to even when they state that they don’t..

  4. If you are going to bring up someone’s disability and talk about it, at least pretend that it doesn’t make you incredibly uncomfortable to say the name of the disability or the word disability. I am not your father or your kindergarten teacher – I will not complete your sentences for you just because you appear uncomfortable.

  5. Remember when your second grade teacher told you that there were no stupid questions? Well, now you’re an adult and the rules have changed. Some questions are stupid. For example: “Does that mean if he ummm like gets run over by a car he will get badly hurt or die?”

  6. Why oh why do you say things to me that you would never say to my partner? Maybe you should trust your instincts more and if you have an instinct not to say it to him, then just keep your mouth shut. On the flip side, I think that a lot of times people are too intimidated to talk and ask the questions they need to ask – sometimes you should think the other way around: if it’s okay to ask me, why not ask him and go straight to the source. Say, for example, you invite him to a party and want to know whether he can get up your 3 flights of stairs on his crutches – I’m not mad at you for asking me, but you can actually ask him directly, too. (Oh, and just so you know, we make it a game and keep an informal score on our acquaintances and how many questions they ask each of us about the disability in question. Actually you should ask me all of your questions, because I am already kicking ass in this game and you will help my score.) I do have to admit that there have been times when I have said “I don’t know, ask him,” when the truth was that I knew the exact answer and just hoped that maybe if I said it in a somewhat standoffish way, the person would realize that next time they should ask the right person.

  7. If you want to talk about disability, can’t we at least talk about something interesting? Read a book or something? (Anything by Eli Clare for example). And I know it’s asking a lot but could it even be something that doesn’t assume that people with disabilities are worthless, or even worse than that that their existence or potential future existence is the world’s worst tragedy? I don’t even like babies much but I recognize their births as things many people celebrate and certainly wouldn’t think of them as inherently tragic.

What would you have said/do you say in situations like 1 and 2? What if the person is a friend? What if it’s an acquaintance? Someone you just met?

What are other similar awkward situations? I know that my partner gets asked similarly awkward questions about my transness.


maudite entendante said...

Speaking of Eli Clare, by the way, he's just launched his new website, complete with a *hottt* page of queer disability resources.

I'm just sayin'.

Ily said...

Exactly, very well said. People who are grilling you about a disability seem to be more in it for the titillation factor than for the actual information. I mean,come on. Just use Wikipedia. Also, interesting link, m_e!

spork said...

Is there a disability 101 somewhere online that you can point them to? (I mean, obviously there is, but I'm on a PDA of the not-making-out-type and searching is hard). I'm a big fan of letting other peoples' lists take care of basic education so that I don't have to wear down my teeth from clenching my jaw and trying not to yell at people.

Anonymous said...

Spork -

This flier from Eli Clare's website may prove helpful

Anonymous said...

this could be a good start for someone.

emily0 said...

Totally selfish moment: I am having a i fucking hate my disability so goddamn much I'm going to cry moment. Slash week.

Thanks for posting this information and for this discussion, it's timely.

I rarely have the chutzpah and spoons to write about disability issues, but invisible disabilities... I would like to write about mine but... it's so tiresome to always talk about yourself (although god knows I surely try LOL).

maudite entendante said...

Heh. I just realized that I would totally start a Type 2 conversation (not a Type-1-"is there a cure" conversation) as a way of leading into saying that you two would be really on-top-of-it parents of a kid with a disability. (And it would no doubt be a very awkward conversation until it got to that point.)