RA Diaries: Why do you ask?

Today is Blogging Against Disablism day. Therefore, it seemed fitting for me to write down a few thoughts on an issue that has bugged me for some time: how do you deal with people, particularly strangers, who ask you about your disability?

I have had RA for 34 years, and it has left its mark. I have bent elbows, hammer toes and limp at times due to a painful knee and ankle. But none of these things are as obvious as my hands, with their swollen knuckles, swan-necked joints and limited mobility.

It is my hands who call the most attention to my disability, and over the years, I’ve fielded my share of questions about them. Many, sadly, have been rude:

“What happened to your hands? They look awful!”
“Oh my God! What’s wrong with your hands?”
“What the hell did you do to your hands?”

I’ve trained myself not to engage the people (and they have usually been strangers or new acquaintances) who phrase things so offensively. I’ve learned to say, usually with a stiff smile, “There’s nothing wrong,” or “Nothing,” and then changing the subject in a pointed way. In some cases, I’ve even walked away.

I realize this may seem rude, but frankly, I don’t owe anyone who asks, unless they’re my doctor, a detailed account of my medical history. It’s a private matter, and besides, most of these questions come out of nowhere, when I’m minding my own business just existing in public.

Besides, every time I’ve answered a rude question, I’ve regretted it. Either they glaze over and stop listening (this tends to happen with children), or they take it as carte blanche to ask more intrusive questions, or they start proposing cures (bee sting therapy, anyone?) that worked for their grandma’s roommate’s sister. Worst of all, they start arguing with me.

“It’s impossible for you to have arthritis!” exclaimed one man I met at a party as a teenager. “Only old people get arthritis!”

These are the most egregious examples, of course. I’ve also been asked in more polite, gentle, even caring ways. I mentioned dealing with children earlier. My best friend has a young son. He is a sweetheart, but gets a little rambunctious at times, and likes to climb on adults like jungle gyms. I asked him to please not do that to me, and he asked why.

“Because it hurts,” I said.
“Why does it hurt?” he asked.

So I explained to him, in the most age-appropriate way possible, about my RA. He no longer tries to climb on me, and goes out of his way to be gentle. Sometimes he forgets, and I remind him. At the end of the day, it’s all good.

I realize that both adults and children are curious about those they perceive as different from themselves. And if they’re not offensive about it, I don’t mind enlightening them about it. But I really struggle with that sometimes, because I get tired of being defined solely by my illness, by my visible disability.

I don’t believe that unspoken societal script that I exist solely to teach someone a valuable life lesson about RA. I am so many more things than my RA — a woman, a daughter, a wife, a friend, a journalist, a pilot, a gourmet, a linguist, a traveler. And so are others dealing with RA or with other disabilities and disabling illnesses. Unfortunately, our disabilities are the only thing people tend to see, and the difference dehumanizes us to them to the extent that they see nothing wrong with asking nosy questions.

Interestingly, I find it most difficult sometimes to field personal questions from other disabled people. I realize they are allies in a society designed for the abled, and that we should talk to each other about the challenges we face. But sometimes, such conversations lead to one-upmanship: “My disability is worse than yours (so quit whining)!” Or else, it leads to insistence that I try the treatment that worked for them (herbs!), and when I demur, they get upset.

I have even had my disability dismissed — on the grounds that, since my RA started so young, I’m used to it now so it’s no problem. The fact is, I never get used to it. Even on good days, when I have no stiffness or pain, I am reminded of it by just looking at my hands. And it’s progressive. And no, there is no cure.

But back to how to field questions, I have considered carrying cards in my purse with FAQs, which I would hand out to those with enquiring minds. And then, I would ask them whether they have a family history of alcoholism or if they’ve ever had an STD. After all, those conditions are far more prevalent than mine, and it’s only fair that I get ask a few personal questions too, right?

On second thought, maybe I won’t. Because, while I may be curious, I don’t really want to know.

All text copyrighted by A.K. Whitney, and cannot be used without permission.

7 comments

  • I hear you.
    I have (as you know, A.K.) a learning disability that is only visible in that I wear tinted glasses. And while, to my relief, most people just think I’m one of those people who affect tinted glasses for fun (WHY would anyone DO that? I used to get tired of the jerks who felt it was their “duty” to make comments and make me take off my “sunglasses”.
    After years of headaches, confusion and poor grades from NOT having my glasses, I am relieved to have the luxury of seeing normally. And I am lucky, it may be painful at times, but it’s treatable. But like you say, I am SO much more than a genetic difference that requires treatment!
    I wish that old “Never ask questions about someone’s personal appearance” were more strictly taught these days. Since my diagnosis, I find ever thoughtful soul who deals with me as a PERSON and refrains from saying anything is a grace and a relief from those less sensitive souls whose rude comments remind me again and again that I am “different” for reasons beyond my control.

  • I am going to second the thought that people should not ask questions about someone’s personal appearance. It’s never a good idea. Ever. Even if you think it’s a compliment – for example, commenting on someone’s dramatic weight loss, when it’s actually due to a disease, asking someone “when they are due” when they aren’t pregnant. You just never know what people are dealing with, and unless they venture the information themselves, it’s nobody else’s business.

  • Good point. I have had friends for years that I’ve dying to ask, “Where did you get that scar?” or “What’s up with your ____?” But I don’t. I realize that I don’t get to pry or bring up something painful to them just to satify my curiousity. I do still pry into every detail of what they could have been thinking when they chose to date so and so, so not everything is off limits.

  • lol I’ve wanted to do the index card thing too. “Here, read this,” which gives me time to amble away.

    It is very frustrating because it feels like there is an expectation on the other side — the curious folks never seem to get enough information out of you, always want more — the helpful-suggestin’ folk want accolades for tipping you off to something that will surely cure your ailment! etc. It’s just that feeling of digging something out of me to give to you, when I didn’t expect to have to engage on this topic in the middle of a party/family get-together/grocery line/whatever.

    You always have to be ready to engage because people get Very Offended if you try to decline engagement on this topic.

  • You are absolutely right, amandaw. I get so frustrated that it’s okay for THEM to be offended if I don’t want to answer deeply personal questions, but not for me to be offended that they asked in the first place.

  • Love the article, I flip flop between educating ( which puts me out there for hurts) or snapping at the idjit that asks.

    I was raped and almost murdered, guy set fire to my house, so there are scars on my body. But also, I slid into illicit drug use…so NASTY scars from that. I use it as a teaching lesson to teens. If drugs can do that to skin, imagine what my brain looks like. HA! you should see the horror. If it helps keep them away from it, I can make my past an asset.

    But no one really understands cept another survivor. and Amanda, YOU are a survivor. to get up everyday and function as you do, you have and are dealing with life on lifes terms. as sucky as they are at times.

    Peace.

  • While I have RA as well, I get this from people because of my vitiligo. It’s on my wrists and ankles, so there’s no way people don’t see it. When I was in high school, people who saw me but didn’t know me would most often exclaim, in horror, “Oh my GOD! What happened to your wrists?” This would often be followed up by, “Are those BURNS!?” If a friend was with me, they would laugh. Usually I just told people they were birth marks because no one gives a crap about the actual condition.

    The most memorable experience was when I was at my small-town local public library (which I had been going to for years), and wearing sandals. One of the librarians (who had known me since I was little) saw my ankles and joked that I had put too much sunscreen on. When I explained, no, it’s vitiligo, it’s when your white blood cells attack the pigment in your skin, she thought I was LYING. She laughed and gave me one of those “pfft!” faces. The next time I went in, however, she apologized. Guess she must have looked it up or something. She said, “I thought you were joking.” Really? Joking? Why would I joke about something like that?

    Ugh. Why, why do people think this is appropriate?

    Thanks AK. This made my day.

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