Everyone has problems.
This month, my work is in A Somewhat Secret Place, a show focusing on disability and its status in art and in society. Participating in this exhibition has led to some fascinating conversations and revelations.
When I tell someone about the show, the most common response is a blank stare and the question “what’s wrong with you?” As an endometriosis sufferer, this is something I’m used to. Many patients, myself included, look relatively healthy. That can be useful since it allows us to “pass” in society when we don’t feel like talking about our lady bits and our disability. However, it also means that our problems are often dismissed as not that bad.
From the initial question, the exchange sometimes develops into something really interesting. I might end up raising awareness about endometriosis and often we talk about disability and access. There’s sharing and maybe some debating, and it’s nice.
That said, the conversation can go in other directions as well. If I’m talking with someone who thinks they know something about endometriosis, they’re not usually interested in learning about my experiences and they often confide to me “my periods are painful too,” as if that begins to cover what suffering from endometriosis is. And then there’s my perennial favorite “at least it’s not cancer,” as if having painful things growing in your body and confounding all of medical science is peachy so long as it doesn’t kill you.
When I told my mother that I was participating in this show, I explained to her that it’s a little strange for me. After all, I don’t fit in with those who have been disabled from a young age. I was diagnosed with endometriosis two years ago and I have only suffered a full array of symptoms since then. In other words, until I was 28, I was mostly healthy, and that means that growing up I had full access. I wasn’t in pain all the time, and I didn’t have any trouble getting around or participating in the seeing or hearing world in a variety of ways. My disability wasn’t something I had to contend with as I matured.
But though I don’t fit in with those who have experienced a lifetime of disability, I don’t really fit in with those who are entirely healthy anymore either. When I shared this last observation with my Maman, her reaction was “everyone has problems.” And I’ll cede the point to her. She’s right. What’s more, I’m the last person to want to compare woes just to come out on top as the one who’s worse off, but that’s not the full story. Just because everyone has problems doesn’t mean I don’t get to have intense feelings about mine.
In the end though, I count myself as lucky. I get to see a bit of both sides, living in the in-between. The things that people say to me about my disability can be hurtful, but I sense that they’re usually an attempt to cover for discomfort or to connect with me. In any case, I try to take the comments that way and, if I find the words soon enough, I try to communicate about why the comment was hurtful.
And when I meet someone else—anyone, abled or disabled—I work on listening, something I haven’t always been that good at, because that’s all any of us really want. We want to be heard.
For more information about A Somewhat Secret Place, visit its blog or go see the work in person!
939 NW Glisan
Portland, OR 97209
Open: 7 through 30 July
Hours: Monday through Saturday from 11 AM to 5 PM
Closing party: Saturday 30 July from 6 to 9 PM