“I’m just not interested in writing a chapter that says #DoBetter feminism!” I say.
“Okay, but think about this—think how important it is for white feminism to be dismantled,” Maren says. “Feminism is better when it’s challenged to be more inclusive.”
It’s easy to agree with her. A feminism that considers the injuries and oppressions of only white women ultimately punishes women as it continues to participate in racism. I can also see that when feminism equates womanhood with vaginas, it continues to fuel the harms of transphobia. When feminism expands its understanding of what it means to be a woman, it’s made stronger, better, richer.
“But disability? I mean, feminism is already concerned with so many intersectionalities,” I counter. I picture all the signs at the Women’s March—signs with slogans representing every political identity and social issue—and try to imagine feminism attempting to squeeze in one more identity, one more set of concerns, one more hashtag onto the protest signs. I continue talking, but I keep my eyes clamped closed as I confess, “I feel stupid raising my hand and saying, Could you include me too, please? ” I make my voice small and pathetic and pretend to raise my hand like I’m a tiny, timid mouse-person.
But mid-performance, eyes closed, I see my younger self, hanging on to the edge of the pool while the girls splash each other in the center. I see the little person who’d rather pretend she’s asleep than try to have a conversation about boys with the prettiest girls in the cutest jammies. This feeling—the one that’s begging me to shut up, stay quiet, disappear, withdraw, retreat—has its roots tangled deep in me. It’s the coping mechanism that says not getting an invitation is actually better. Because once you’re invited? People can see you. And that means a minefield of triggers and risks. Better to just stay out of it. To find your own pocket of peace. To party solo.
It’s like Maren senses it. “But you’re not asking to be included on behalf of just yourself,” she says. “Right? You’ve been given this platform to speak on behalf of so many people. This isn’t just about you.”
And in that tiny moment, I can see all of us—growing up across the planet, trying to figure out the world around us with these bodies of ours that don’t quite fit. I see us as little kids getting overwhelmed at birthday parties, at the dinner table with families that don’t quite get it, flipping through magazines on our beds scouring the pages for even one picture that looks a little like us, going to our first school dances and dancing alone in our rooms, making cautious dreams and staying up late at night trying to solve the impossible puzzle of independence, recklessly navigating our first experiences with love and sex and friendship because we haven’t been given one goddamn road map. Suddenly, I do see it. I’m not raising my hand for me. There’s a big, beautiful population of folks who want—who deserve—to be included, too, and raising my hand for us feels different. Suddenly, I feel validation and urgency behind this conversation.
But again, I stop short. I may be disabled, but I’m also an educated, white, straight, cis woman who grew up in a middle-class household, with way too much education for my own good and, at least for now, a full-time job with health benefits. To top off this privileged castle in the sky, even if I were to lose my job and home, I have family who would catch me. Of all the disabled folks living in this country—in the world—I have a relatively cushy gig. I’m swimming in privileges I can’t even fathom. “I’m not sure,” I hesitate. “I’m like one tiny person. What do I even know? What can I say about Disability?”
“You’re not trying to be ‘The Voice of Disability,’” Alyssa says, placing heavy air quotes around this make-believe title.
“Right. Of course. There’s no such thing. No universal experience of disability,” I say, sounding a bit too condescending for a conversation where I’m actually the one flailing.
“Right,” Alyssa says. “But you have a voice, and you’ve been handed this microphone. What do you know? What can you point to? Who can you bring with you?”
* * *
In 2006 Christopher Bell published an essay titled “Introducing White Disability Studies: A Modest Proposal.” In it, he voiced a criticism that many had felt for some time, namely, that the academic field of disability studies was churning with white disabled folks in mind and did an abysmal job of engaging the intersection of race and ethnicity in the conversations being had. The essay was widely read, made a name for Bell, and unfortunately remained locked in the tower of academia. This conversation needs to be more than theoretical. In the same way that feminism is weakened when it fails to integrate disabled folks into its fold, disability work that concerns itself with only the most privileged bodies is missing the point.
I think of all the disabled folks I’ve met online, all of the faces and backgrounds and bodies and experiences and expressions and captions and comments and feelings and stories and You too? moments. These people are strong and funny and sharp and full. They’re good storytellers and create fantastic memes. They have important and frivolous and entertaining things to say. And these vibrant, creative, ordinary people are vulnerable to a world that consistently ignores, denies, and punishes them for their differences. It might be easy for me to dismiss or diminish my own experience, but when I picture my whole community together, raising our hands, every age and gender, ethnicity and citizenship status, living situation and level of education, sexuality, skin color, and size, it’s also much easier to raise my hand with them and ask that all of us be included.
Not only do I feel motivated to raise my hand, but it’s easier to see why our inclusion is important. As I picture all of us together, I see it: disability that represents only people like me is missing the point, and feminism that considers only nondisabled bodies is a shortsighted feminism that eventually runs out for every woman claiming its protection. We need each other.
A couple of years ago I attended a panel discussion featuring the voices of young women who’d already garnered notable success in their fields. There was a chef, a lawyer, someone in marketing, and a woman with a job I didn’t really understand. The moderator introduced the panel as a diverse group of women from different backgrounds, cultures, and ethnicities. The moderator took time to emphasize the importance of hearing different perspectives, and I was glad to see this sentiment backed by some amount of intentionality—the woman with the mysterious job and the moderator seemed to be the only white women with access to the microphone.
I listened to their stories about working in kitchens with bosses who hit on them and punished them when the flirtiness wasn’t reciprocated. Stories about waitressing long hours to make it through law school. Stories about rushing to drop kids off at daycare before speeding to work each morning. As the discussion unfolded, I recognized that this conversation wouldn’t intersect much with my own experience as a disabled woman. And that felt okay—this feeling happens, and not every conversation has to be for me.
But near the end of the discussion, a woman in the audience asked, “How do you manage work-life balance?” All of the women on the panel chuckled. No one wanted the microphone. Reluctantly one of them said, “I’m not really the best person to speak to this. I haven’t taken a day off in eleven years.” Everyone laughed and she passed the mic to another woman. Her response was similar. “Work kind of is my life,” she said, almost apologetically. “There are times that aren’t as busy, but it’s not uncommon for me to work a sixty-hour week.” A third woman was the first to offer a tip: “I find exercise is really important. Even if it means getting up at four in the morning to spend an hour at the gym before the rest of my family wakes up, it’s worth it.”
I sat in the audience, stunned that these were the only responses provided. Really? Is that it? Let’s all just giggle about the impossibility of having both a career and a body with limits? Nearly two years later, I still think about that conversation. Each woman on that panel presented themselves as living in bodies with endless resources, and they were there to model success from
that position. How many women listening had bodies that could replicate that model? How many can sustain that approach for another ten years?
We live in a world that rewards women who can push themselves beyond their maximum capacity, but not a single woman alive can maintain that push indefinitely. What perspective might disabled women breathe into this conversation? What collaborative reimagination might ignite if we offer the microphone to people who’ve been navigating a relentless, unsustainable work setup with bodies that don’t/can’t/won’t/shouldn’t oblige—what do you think?
I’m not proposing that every single feminist conversation has to be about or for or even include disabled women. I am saying that erasing disabled women from our vision of what it means to be a woman limits all of us. And not in some abstract, theoretical way. Literally and truly—every single woman is subject to the demands, uncertainties, and limitations of her body—a body that strains under the forces of gravity and time, that wrinkles and breaks, swells and sags, accumulates pain and injury. Many of our bodies are literally torn by giving birth, transformed into food through lactation, and subject to the roller-coaster unpredictability of menstruation, menopause, and hormone therapy. The most consistent, most universal, most shared experience in having a body is that they all change, and if you live long enough, they all start to slow, forget, fracture, ignore orders, and revolt. When we pretend disability is not a part of womanhood—when we keep the two separate and distinct—we’re all left less equipped, less adaptable for the inevitable challenges of life.
Honestly, I get it. It’s not hard to see how the chasm between womanhood and disability formed. In our not-so-distant past, the “physical frailties” of women (which, yes, included monthly cycles, because, BLOOD!) were used as evidence that they shouldn’t be educated, shouldn’t work, shouldn’t leave the house, shouldn’t travel alone, blah, blah, blah. (Side note: Did you know that when public restrooms were first created, they existed only for men? Because, why would a woman ever be in public long enough to need a toilet out in the wild? TRUE STORY.) In order to assert that we do deserve education and work and the right to exist in public, women have felt the need to claim their strength and hide any perceived weaknesses. Because, in a very real way, they could be used as evidence to send us home. This has to be felt even more intensely from women who intersect with additional marginalized identities, women who don’t need one more reason to be excluded, dismissed, or rejected. I also wonder what we’ve lost in our struggle to minimize these so-called weaknesses and prove we can fight just as hard. Can we be both gentle and strong? Fragile and resilient?
As we ignore or minimize our vulnerabilities, our most tender parts, our inherently human physical limitations, I wonder—are we just reinforcing the rules patriarchy wrote: a body that doesn’t have needs = ideal, valuable, worthy. A body that has needs = discard pile. Not only are these rules utter bull-a-shit, but they’re boring. What else is out there that we can’t see beyond the towering fence of rougher-tougher-stronger patriarchy? What happens when we acknowledge the fact that all of our bodies need help, intervention, and support? And why not invite the experts on the front lines of adaptability and access to that conversation?
Not every feminist icon has to be disabled, but I wonder what we might lose when we look up to only the strongest, fiercest, youngest, and fittest—the ones who don’t seem to age in any meaningful way beyond collecting a few graceful wrinkles and rocking white hair. What nuances and insights are we missing by our selectivity? Remember how the world flipped out when Selma Blair touted her cane on the red carpet at the Vanity Fair Oscar party? That image of her holding her cane in her billowy silky dress seemed to explode our brains. It showcased the tangled relationship between weakness and strength. It represented so much grace and poise and beauty, precisely in the moment she publicly embodied her diagnosis of multiple sclerosis.
What happens to womanhood when we always idealize the most able, the most “successful,” the most independent? Just this morning, I was blasting Kesha’s “Woman”—and I sang along, because I am a motherfucking woman, baby, and I don’t need a man holding me too tight. So many feminist anthems (especially, as it turns out, the ones that I love belting out at the top of my lungs) honor independence as the highest form of female empowerment—buying lots of stuff with your own money, paying your own bills, not needing a man for anything. It feels really good to scream along.
In these cathartic moments, I channel the newly divorced Rebekah. Growing up, I never imagined I’d be able to pay my own bills. When I moved into my first apartment on my own, I’d been given complete access to a fully fueled rocket ship—the universe was mine. It didn’t matter that the apartment was subsidized or that food stamps paid for my groceries or that my monthly checks were from the Social Security Administration. The fact that I was legally able to divorce my husband—against his will—was nothing less than an unquantifiable gift that existed only because women before me had fought hard to make it possible. Our independence is not something to gloss over. The freedom to vote, to own property, to divorce our spouses, to choose what happens to our bodies—these are game-changers.
And also. When I think a bit more about these kinds of lyrics, I can’t help but think of Micah. My mind flashes to the recent, still-dark mornings I clung to Micah’s shoulders as he helped me stand, slowly and painfully. I think of Micah taking off work and flying with me to a speaking gig so he can help me navigate the airports and stretch my spasming legs before bed and first thing in the morning. This year my body has deteriorated rapidly, and I’ve been leaning heavily on this man. I might even say I’ve become some kind of dependent on him, just as he was dependent on me when he broke his femur a couple of years ago. It doesn’t feel stifling or limiting or disempowering (like the claustrophobia I felt in my first marriage). It feels sturdy. I still love these anthems—and so does Micah, by the way—and I don’t plan on taking songs like this off my playlists. They do a wonderful job of telling one important part of the story. But I also wonder: Do we lose something when we worship independence and villainize dependence? I get why freedom is everything, but do we miss out on interdependence when we cling so tightly to autonomy? I wonder, what could disabled women add to our conversations about the possibility of being an empowered independent/dependent woman?
Disabled women are a part of this, and while the shape of our stories can look different, we are also injured powerfully by patriarchy. In fact, some of the conversations most fundamental to feminism—violence against women, reproductive rights, equal pay—are left recklessly incomplete when we exclude the voices of disabled women. How can we fully dismantle patriarchy unless we’ve taken care to examine the range of wreckage left in its wake?
We can’t have a complete conversation about violence against women without including the experiences of disabled women. The National Coalition Against Domestic Violence reports that disabled women are three times more likely to be sexually assaulted than their nondisabled peers and estimates that 80 percent of women with disabilities have survived sexual assault. Many disabled women have cognitive and/or communication impairments that abusers recognize as reasons these women are less likely to report abuse or be believed. Disabled women are also often put in a position of intimate reliance on their caregivers or their primary partners to help them go to the bathroom, bathe, get dressed, eat, and so on; if they report abuse, they risk losing care or being institutionalized. The 80 percent is not just made up of women who have difficulty communicating or are dependent on caregivers, however. Many articulate disabled women who don’t rely on caregivers are part of this statistic, too. Like me. Maybe you and your friends, too. There are many tangled ways that disability adds to the already high risk of sexual assault that women face.
We can’t talk about reproductive health or freedom without talking about the stigma surrounding disability and sexuality or the lack of education that disabled women experience when it comes to conversations about consent, pl
easure, or contraceptives. Over the course of our history, disabled women have been forced and coerced into sterilization, pressured to have abortions, barred access to fertility treatments, and criticized for reproducing.
When we talk about “equal pay” for men and women, how do we ignore the unemployment rates for women with disabilities? It is actually and truly legal to pay disabled employees as little as pennies an hour for their labor. This has been practiced legally for decades, and there are companies doing this right now. How is this not part of our conversation about equal pay?
When you see it all together, gathered in a list, isn’t it weird that these stories aren’t a part of the discussion?
I keep thinking about the catcalling conversation in the fancy loft. I wonder, how else could that have unfolded? I’ve tried to imagine what would have happened if I had shared my stories—of being catcalled and secretly liking it, of being shouted at by men in parking lots who think I need them to help me get my chair into my car even as I do it with ease right before their eyes. Would my additions to the conversation have added complexity to our understanding of patriarchy? Would we have a better understanding of this force as we consider the effect it has on the women it targets and the women it ignores? Maybe the addition of these stories could invite a more collaborative exploration of the line between objectification and admiration or the relationship between patriarchy and ableism.
I don’t know whether my stories would have moved us in this direction—I like to think so—but I do know the sole responsibility to push this conversation forward can’t rest on the shoulders of those who’ve only recently been given a seat at the table. It’s not enough to simply send the sparkly balloon invitation. Showing up to a space that has historically ignored, erased, or belittled you is scary and exhausting. But if the ones in charge of the party take a beat, listen to the newcomer, and make genuine space for difference, I believe everyone is given more—more room, more flexibility, more options. I mean, did every single girl at the swim party really want to be in the middle of the pool screaming and splashing? Maybe some of them longed to hang out on the side where the waves were calmer. Maybe some of them would have preferred not to get their hair wet at all. Maybe some of them wanted to go to sleep earlier, wanted to wear basketball shorts to bed, wanted to talk about cute girls instead of cute boys. There might be a little less for those who’ve grown used to having the whole table to themselves, but for the most part? I think including more voices means more for us all.
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