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Falling Through Them Femme Cracks


August 7, 2013 by

Betty Friedan can tell you all about The Problem That has No Name. Judith Butler can tell you all about the male gaze. But what no one seems to explain, or even acknowledge, is the experience of the disabled woman.

302085_188289447918999_114388275309117_383878_17259756_nYou see, being a disabled woman in the context of feminism is like getting having an invisibility cloak forced upon you, rather than getting it for Christmas from Dumbledore. Often times it’s a lonely struggle. Often times you must accept that your experience of being disabled and being a woman just doesn’t fit into the mainstream feminist dialogue. Let me tell you, that isolation is damn frustrating, and I’m done accepting the status quo. I shall blithely say, “C’est la vie” no more.

I mean if it’s supposed to be so validating and inclusive, where are all my fellow gimps in the Dove Campaign for Real Beauty? In the discussions of body-image, self-esteem, and acceptance, wouldn’t’ you think women who have been told time and time again that their bodies need fixing would be the ones who might need that kind of message the most? Guess not.

Case-in-point: Some of you may remember the monologue I wrote about not wanting to be prayed on in airports. But I didn’t really get into the back-story of how that piece came to be. Sit down a spell and I’ll spin you a yarn…

During my time at Duke, I secretly always kind of wanted to participate in extra-curricular acting or drama of some sort, but never tried out because I thought I would be an automatic “No” due to my appearance. I figured ensemble member number 12 with webbed hands and bandages probably would have thrown a hammer threw the Fourth Wall.

And then senior year, this show came a long, a monologue production tailored specifically for women’s stories at Duke. It was a performance of anonymous submissions from Duke women by other Duke women, celebrating the trials and tribulations of well, being a Duke Woman. You could write a piece, try out, or both. The two were mutually exclusive.

Perfect! Says, I–who at this point was more comfortable with myself and sharing my story now that I had held the reigns of Duke Disability Alliance for three years. Though the show existed the whole time I was a student, only now was I ready.

What better way to get the chance to write a piece? What better way to expand the concept of feminist issues than to discuss my experience as a visibly disabled woman and how people have reacted to my body? Maybe….just maybe…I could even try out? Le gasp.

When I tried out, I rocked it. They laughed, they cried, and I bounced my way out the door thinking I was surely an In. The girls even commented about how much they loved my written submission. In the words of that proverbial sage, Jason Derulo, I was feeling like a star, and my shine could not be stopped.

And about that written submission; though I poured my snarky heart out into the piece and made public an anecdote usually only reserved for my nearest and dearest, I was told it wasn’t exactly a feminist enough issue, but rather an identity issue. It would make a great piece for a different monologue show that Duke did every year about race, gender, and sexuality. I didn’t make it into the show either. Double bummer.

Before I go any further allow me to say I don’t mean to sound bitter, as if I am using a soap-box because I didn’t get into a show. What I am aiming at here is to get across what the show represented to me; how I felt that my experience of navigating my womanhood alongside my disability wasn’t a valid enough experience to be counted as “In” with these women who were my peers. If they had just said my piece was total garbage I would have nursed a bruised ego and moved on with my life. What I can’t seem to let go of, however, is the notion that my experience that day in the airport wasn’t a feminist issue. I mean, would it not have been inherently a feminist issue simply by coming out of a woman’s mouth on stage?

To their credit, the piece did focus more on the visibly disabled aspect of things rather than how it had to do with my identity as a woman. But then again, when the show is literally entitled “All of the Above”, I didn’t think I had go through the effort to connect those dots in my writing. But there’s no time like the present. So let’s break it down, shall we?

  • Many women have intense pressure to conform to an impossible standard of beauty by society.
  • Women are often times judged first and foremost on their appearance.
  • When they can’t live up to it, it can cause poor self-esteem issues.
  • Having a visible disability makes it virtually impossible to be even in the same category as that societal norm of beauty. (at least it did for me for a long time).
  • When people see me in public and their knee-jerk reaction at the sight of me is to pray for my healing, it sucks, and hurts, and is humiliating and makes me feel not just “ugly” but otherwise inhuman.
  • Experiencing this as a teenager made trying to create even a mere semblance of self-esteem in relation to my appearance about as easy as trying to piece together a shattered crystal vase.
  • Especially when people also have reacted with the sight of me and people like me by thinking we were contagious.
  • For ever and ever, the concept of “pretty” and me never went in the same sentence.
  • For that matter, why did I chalk up so much of my worth to how I thought people reviled me when they saw me when I went out in public?
  • Staring blankly at the ground and enduring someone yelling at God to “take the Devil’s hands off you” makes one recall the day in the cafeteria when Mean Girl 1 found out I had a crush on the same boy she did and replied, to Mean Girl 2  “Who would ever like a girl with scales?” Mean Girl 2 promptly told me. Now I know I didn’t mention that in my piece, but as a side note, that shit sticks with you.
  • Ps. As another aide, this complicated issue is only compounded by the fact that when you do any of the slightest research on my disorder, the words “disfiguring” and ‘deformed” are one of the first words that pop up. It’s as of to say “look how horrible their lives are! They’re deformed.
  • Tell me now this isn’t a feminist issue.

So pardon my forked tongue here folks. It’s taken me a while to get the courage to air out my frustrations. As a woman who faces so many more hurdles with her own perception of her body and how it is consumed visually, it sucks to feel left out by my fellow sisters. That’s the moral of the story here. Disabled women are also women. And as such, we deserve to be seen and heard and validated. Modern feminism has a long way to go to becoming more inclusive in the collective “woman” experience. I’m not naive enough to think I can change feminism in one blog post, but as for changing the discourse at Duke, making the Women’s Center accessible would be an awfully great start.








  1. Gale Alexander says:

    Thanks, Megan. As always…you nailed it. As the grandmother of a 6 year old girl with EB (you know Ella), tell me how we prepare her for this societal reality.

  2. psumama says:

    Meant to comment when you first posted this, but I get easily distracted and didn’t make it back here until now. I am sure I would never be confused with being a feminist, so maybe my opinion doesn’t hold water, but if you have an issue that affects a woman (and aren’t there MANY women with disabilities?) wouldn’t that make the issue a feminist issue? Don’t we want to give voices to ALL of our sisters, no matter what challenges they are facing?

  3. Hi Megan!

    My name is Bailey and I am making a documentary on EB and would love to ask you some questions!
    Please contact me anytime!

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