Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

Everyone has problems.

2011 . 07 . 14 - Comments / Commentaires (6)

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.

PRESENTspace Portland, Oregon

photo by David

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

- A Somewhat Secret Place
- Disability and my sense of self
- Change

CATEGORIES: - English - Endometriosis - Events - Philosophy -

Gwenn Seemel on Liberapay     Gwenn Seemel on Patreon

(6) Comments / Commentaires: Everyone has problems.

-- Lisa Plemmons Harrison Caddel -- 2011 . 07 . 14 --

As I was attempting to formulate my question about how is one supposed to compassionately respond to someone with a disability or any circumstance about which one has no true understanding, I noticed the security characters I have to enter in order for my comment to be seen.  It says period73, and I found that to be ironically funny!
I agree that listening is a key element, and allowing someone to feel their pain and come to some sort of peace with it on their own is important.  However, asking as someone with good intentions who has often ended up with her foot in her mouth, what sort of response are you hoping for when you share this part of your life?

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-- Jessica -- 2011 . 07 . 14 --

“Just because everyone has problems doesn’t mean I don’t get to have intense feelings about mine.” YES. thank you. thankyouthankyouthankyou.

@Lisa-I won’t speak for Gwenn but I will speak as a young woman with endometriosis. I don’t like to compare women’s pain, but I will say I hate as well when a woman says, “yeah, I get cramps, too.” I think if they phrased it as a question instead of trying to make some all-encompassing statement that “connects” me to them, it would be better. Like, “I suffer from cramps/bloating/mood swings the first day of my period. Is endometriosis pain kind of like that?” And then I could say, “It’s like cramps on steroids times 100; Midol doesn’t touch the pain, nor does the pain always come just with periods.” Or tell more of my story: fatigue, idiot doctors, medication issues, surgery, missing life events because of endo symptoms, etc.

The emotions of endometriosis are the hardest. Mostly because there’s such intense pain in a place that is supposed to be a sacred center of pleasure. That makes speaking of it, thinking of it, or being intimate difficult. And of course, there’s always the “but you don’t *look* sick” phenomenon.

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-- Gwenn -- 2011 . 07 . 14 --

@Lisa:  What Jessica said!  When I mention my illness, I’m not trying to make people uncomfortable.  I’m talking about it because I want to talk about my experience of it—I need to.  People don’t always want to listen and that’s okay, but if they’re willing it feels good to share about what I live with. 

Maybe not every person with a disability likes to talk about their experiences, but I don’t think it ever hurts to ask.

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-- Amy Louise -- 2011 . 07 . 14 --

Im always interested in exhibitions that have a leaning or are focused on disability/disabled artists and those (artists) that are involved. I am paraplegic due to a degenerative brain disorder and im a professional full time artist (i should have written this the other way around!!) I feel very strongly about not applying or involving myself with disability arts. i wonder if i feel this way because it is so apparent that i am disabled and for you, as you said above,  it is not so apparent so you feel more able to work in both areas?? i dont want to pigeon hole myself as a ‘disabled artist’ so avoid all disability arts to ensure this.  I would always support disability arts but not as an exhibiting artist. I suppose the difference is that as someone with a very obvious disability i have no choice about disclosing my problem, they see it. But you must also suffer as they can’t see and assume there is no significant problem? im rambling now! very interesting.

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-- Amanda -- 2011 . 07 . 15 --

This is such a difficult area because everyone has a very solid individual idea of what disability is and what it means to a person’s life. Taking the chance to breech these barriers is so hard, and so kudos to you for being so open about it, as I know it is far from easy.

I was diagnosed with Endo at 21, but had problems ever since my periods started at 13. Still, it wasn’t until I was at uni and my personal tutor suggested maybe I should “give myself a break” and ask for *and accept* help I needed such as deadline extensions when I was really sick with it because, in her words, I may not think of myself as disabled, but I certainly had a disability. I’ll always remember that talk because she first introduced the idea to me that a disability is anything that affects your ability to live life as most other people do. It could be a mental illness, a learning difficulty, something totally obvious like a physical disability or like so many chronic conditions it could be completely invisible and yet control so much of your life.

I’ve worked with a variety of disabilities through recent years. I’ve been on summer camps to support teenage girls with conditions such as cerebral palsy, brain damage and prada willi syndrome. I’ve supported university students with hearing impairments and mobility issues. I know work in a school and a few of the kids have conditions I would class as “disabilities”. My mum has M.E, my uncle has been paralysed from the waist down since he had an accident in his early 20s. When I think about it I realise that perhaps the reason I am so open about my own Endo is because I have seen such a wide range of disabilities and it has kept my eyes open, even when I haven’t consciously thought about it. But it is still hard!

And you have the opposite side of things where although you may accept you have a disability and are willing to share that with others, it can stand you in stead for discrimination. I left my previous job because of bullying from my manager and the employer, who was supposedly passionate about “equal opportunities” simply turned a blind eye to it all. I find it so hard to comprehend when people equate disability to “weakness” and I fought tooth and nail for 18 months against the bully, but in the end decided it wasn’t worth it when my health was suffering. I can only imagine what others must have to face when their disability is much more obvious.

And yet I find that despite being very aware of disabilities, I also find it very easy to look at a person and “forget” they are disabled. I guess it doesn’t matter what experience you have had, having any form of disability makes you both aware of the struggles others have to face and able to see beyond the disability to see the actual person in pretty much equal measure.

I hope that makes sense? It’s hard to explain what I mean sometimes. Sorry again for the extremely long comment, you’ve just hit another one of those topics that I resonate with strongly!

Enjoy the rest of the show xx

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-- Gwenn -- 2011 . 07 . 16 --

@Amy Louise:  I think a lot of artists are hesitant to pigeonhole themselves—as disabled artists, as women artists, as any category of artist—and I get it.  My own internal dialogue about A Somewhat Secret Place and whether or not I should look to be involved started as soon as I saw the call-for-artists and has still not reached a consensus of any kind!

That said, I know you’re right about my motives.  The deciding factor for applying to the show was my desire to raise awareness about endo specifically because it is a mostly invisible disability.

@Amanda:  You make sense!  smile And thank you, as always, for being in conversation with me!

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