To Be a [Disabled] Woman

[Image Description: A blurred cityscape all in various shades of pink. The sun shines at the top giving off a white glow against the pink] Image Credit: Photo by Meiying Ng on Unsplash

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Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in. If you like this post, give me a like with the ❤️ symbol below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts!

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Disclaimer: The following is based strictly on my experience and observations as a woman in the world—specifically a disabled woman. It’s intention is not to put down anyone else or minimize anyone else’s experience…it’s my feelings and my perspective.

I watched Barbie again over the weekend…4th time and counting. After finishing Baby Reindeer, I needed something hopeful and uplifting to watch.

Every time I watch Barbie and every time I hear America Ferrera’s speech, I find/think of/pick up on something new. This time, it inspired me again. I wanted to break down her entire monologue and talk about how these specific things have shown up in my life.

I’m a disabled woman and with that comes an extra set of challenges, so there’s some extra nuance to my personal experience that the movie doesn’t get into (a lack of intersectionality was definitely one of its biggest shortcomings). Nevertheless, here it goes:

It is literally impossible to be a woman. You are so beautiful, and so smart, and it kills me that you don't think you're good enough. Like, we have to always be extraordinary, but somehow we're always doing it wrong.

Like America tells Margot Robbie (Barbie), people have told me I’m beautiful and smart in my own life. But like Barbie, I don’t often believe it or haven’t seen it about myself. As a woman with a disability, I’ve felt the pressure to be “extraordinary” to counteract my self-perceived physical “shortcomings”. I have to work extra hard. I have to be extra nice. I have to be extra agreeable. I have to dress extra cute and look extra put together. But then by doing that, I become a doormat. I’m too “mainstream”. I’m a people pleaser. I’m “doing it wrong”.

You have to be thin, but not too thin. And you can never say you want to be thin. You have to say you want to be healthy, but also you have to be thin.

I was very thin for a long time because of my muscular dystrophy and I was often teased for it, all the way through college when I was accused of being anorexic by a neighbor. I ate and ate (and poorly, at that) trying to gain weight so I wouldn’t stand out or get teased, but until I got older, my weight didn’t change much. Now that I’m older, I look back at photos and wish I had appreciated how thin I was then because now I feel like I’m not thin enough. Exactly the problem the quote is addressing.

You have to have money, but you can't ask for money because that's crass. You have to be a boss, but you can't be mean. You have to lead, but you can't squash other people's ideas.

Talking about money is awkward for anyone but for women, it can be even more so, especially when we’re so often paid less than our male counterparts anyway. I’ve definitely had my share of male bosses that I had to very uncomfortably ask for a raise. We’re supposed to be strong leaders, but we have to do it in the exact right way. You can’t be direct or you’re a bitch. If you’re too nice, then you’re a pushover. You’re supposed to be grateful (something said later on in the monologue) so you’re never supposed to ask for anything outside of the realm of what you’re given.

You're supposed to love being a mother, but don't talk about your kids all the damn time. You have to be a career woman but also always be looking out for other people.

I’m not a mother so obviously I can’t much speak to this one, but I know that my many friends who are mothers have to juggle an entirely extra set of expectations on how they’re “supposed” to act and move through the world.

You have to answer for men's bad behavior, which is insane, but if you point that out, you're accused of complaining. You're supposed to stay pretty for men, but not so pretty that you tempt them too much or that you threaten other women because you're supposed to be a part of the sisterhood.

I think the entire culture of “well she was wearing this” or “she did this” when women are victims of sexual violence is enough to prove the first point above. If you dress too “frumpy” or not “sexy enough” though, and men don’t find you attractive, then somehow you’re null and void. Our worth is often based on how attractive we’re seen to other people. As a disabled female, I was told by society from the get-go that I wasn’t attractive because of this thing I was born with. In fact, people would often express their surprise that I was disabled because I’m “pretty”. Like somehow the two can’t coexist? You have to be attractive to other people, but don’t you dare feel attractive yourself because then you’re arrogant or full of yourself or not being an ally to other women. This part of the monologue could definitely have it’s own separate post.

But always stand out and always be grateful. But never forget that the system is rigged. So find a way to acknowledge that but also always be grateful.

The "always be grateful” part sticks in my head so much, especially as a disabled woman. Whatever crumbs we get for equality and accessibility, whatever small improvements might be made, if we aren’t grateful, then we’re bitches. If we ask for more, then we’re ungrateful, “high maintenance”, or we’re asking for “special treatment”. I embrace the idea of “standing out” more now, but for the longest time, those were two words I wanted nothing to do with. I just wanted to disappear into everyone else.

You have to never get old, never be rude, never show off, never be selfish, never fall down, never fail, never show fear, never get out of line. It's too hard! It's too contradictory and nobody gives you a medal or says thank you! And it turns out in fact that not only are you doing everything wrong, but also everything is your fault.

I'm just so tired of watching myself and every single other woman tie herself into knots so that people will like us. And if all of that is also true for a doll just representing women, then I don't even know.

This last part just brings it all home. The never-ending and impossible expectations of being a woman in the world. There’s no way we could ever do it right, even if we wanted to. I can’t even tell you how I’ve felt crushed under the weight of trying to act all of the ways. Be strong, be assertive, but also be agreeable and nice. Don’t cry. But also be sensitive. But don’t be too sensitive. If you’re having a bad day, make sure you don’t show it. Smile through everything. Don’t ask for what you need because you’re inconveniencing the other person. If people don’t like you then something has to be wrong with you. If you’re not in a relationship, your life has no meaning. I am 100% someone who has tied myself up in knots for years so people would like me (even when I didn’t like myself), often so people would see past my disability. It’s absolutely exhausting. But hearing someone else put voice to all those feelings—some I hadn’t even thought of—is incredibly healing.

Here’s the clip of the monologue from the movie if you want to hear or see it in all of its incredibleness.