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.