How about not?
Truly, this is probably one of the most annoying things which people say to me. Well, ok, I exaggerate, but people have been saying it a lot lately so it’s on my mind.
I’m a rather private person. I don’t think I’m that much more private than most, but as a general rule, I believe that my health is a personal matter. And that my body is my business, which is yet another example of how feminism and disability intersect, since women and people with disabilities have a long history of lacking bodily autonomy and getting serious pushback when they dare to try and assert it. My health, and my body, are between me, and the people who provide me with medical care. I may provide select people in my life with relevant information about my health when it becomes apparent that the information is necessary or important (for example, when I worked for other people, sometimes I needed to request accommodation in the workplace). But this is not an open invitation to these people to ask me questions about my health.
Yet, they seem to think that it is. And this is one of the biggest problems with owning your disability status when you have invisible disabilities. When you out yourself as a person with disabilities, people are apparently under the impression that this means that you want to talk about the specifics, that you welcome their suggestions and helpful hints, and that you would like nothing more than to discuss detailed and highly private health matters in public. They assumed that you were like them and now that your dirty little trick has been revealed, they think it entitles them to information about The Other.
Truly. I have had people talking in very loud voices in public settings about intimate health matters. One might think that even if these people think that the desire for privacy does not apply to them, they might think about the fact that broadcasting information to complete strangers is probably not desirable. Especially in a small town, where information travels fast and often gets garbled, which means that I’ve heard a lot of varied, wrong, and highly entertaining variations on my disability status and health issues. (My favourite story: I had an aneurysm while on a dirty weekend at Tahoe with a cop. People, you cannot make this stuff up!)
Sometimes complete strangers apparently think it’s ok to act like they know all about me because they’ve heard something through the grape vine. Who feel that it’s appropriate to, say, walk up to me in the supermarket and say “I heard about…the diagnosis” or “how is your new medication working out for you,” or “you know, my sister’s son had [whatever they think I have], and he grew out of it!” And I must stand there, politely gritting my teeth while someone I don’t know is basically assaulting me in a public setting. And I can see everyone’s ears perking up as they freeze over the bananas and stop squeezing the oranges, because they want in on this juicy gossip.
The thing about invisible disabilities is that a lot of them carry stigma. I have no problem with being very open about my asthma, because, you know, it’s a no-fault disability, and it’s a pretty visible one at times. Some people just…get asthma. And it’s unfortunate that this happens, but no one makes a value judgment about you when they hear that you have asthma. Although they will tell you that someone they knew grew out of it. If I had a dollar every time someone said that to me…well, I wouldn’t be worried about my health care expenses, that’s for sure.
But, other conditions which I have? They carry stigma. One way to address stigma and to fight it is to come out, but that’s not an option for everyone. And I need to think about the fact that I live in a small town and I will probably live here for the rest of my life, and I would rather not be branded for life by the judgments of others. I need to think about the fact that people are routinely denied things like bank loans on the basis of disability status, and I need to think about whether or not I am ready for that to happen to me because the bank manager knows exactly who I am. I need to think about what will happen when I need to rent a new home and the landlord turns me away because of garbled information about my health and personal history.
And I need to be able to assert my own autonomy.
Someone I don’t know very well recently asked me to “keep me updated on your health,” and I had the audacity to say “you know, that’s really a private matter,” and this person looked at me as though I had shat on ou mother’s grave while doing the tango.
Yes, I, the person with disabilities, chose to exercise autonomy over my body and private medical information by telling someone that my health status was not this person’s business. And I became the bad person. Just as women who inform people that their bodies are private are told that they’re being unreasonable.
Which brings me to my final point; I can’t help but notice that people somehow always manage to turn things back to them. They don’t care about my disability status or health; if they did, they’d already know about it. What they care about is information, the control of it, and the opportunity to exercise power over me. And this is, perhaps, what I find most infuriating about “please keep me updated about your health.” People get angry that my private information is not relevant to their lives, and thus, they make me into the enemy when I suggest that they should go take a long walk off a short pier and enjoy the swim.