Getting Proud and Staying Proud: Navigating Pride as a Disabled Person

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I planned to write a piece this month called How to Survive Pride as a Disabled Person. It would have listed strategies for making Pride (which, from an accessibility standpoint, is basically taking a loud, crowded walk for three hours) less exhausting: go in a group, stake out seating early, snag a parking pass if you can, and make sure to plan food and rest breaks. Of course, that title is only funny if you can assume you will, in fact, survive the day. As Orlando reminded us, there’s no joke there anymore, if there ever was.

I went to LA Pride the morning of the Pulse shooting. It was just the kind of rainbow explosion I needed to buoy me through those initial hours. Not as a distraction, but the opposite—knowing that we were coming to grips together, in real time. Whenever I lost what to say or feel or do, I could cheer someone else on. I wanted to hug everybody I saw. For once, Pride almost served its purpose. Almost.

At one point a group marched by wearing shirts that showed “race,” “gender,” “sexuality,” and “religion” all crossed out and replaced with “LOVE” at the bottom. I could go into liberal arts overdrive about the issues there, but my biggest was one I didn’t notice right away. It took me a minute to realize “ability” wasn’t on the list. That’s how acceptable that oversight is: I, who seemingly can’t stop thinking about disability, nearly missed it.

We like to assume that the toughest part of physical disability is just that. All we need is a ramp or an elevator or reserved seats and poof, access granted, right? Yes, we have to continue that conversation until every person can get into and out of every building. But the most insidious bias against disabled bodies—the kind that’s trickiest to identify, confront, and stamp out—reveals itself in attitudes. It very rarely comes from a bad place, which is what makes it so difficult. A Pride parade assumes that walking (or rolling) a mile and a half is the best way to celebrate your community, a shirt meant to remind you that love wins reinforces how that community forgets you, a compliment on your body (“she’s disabled, but she’s really hot”) implies that “but” has to be there… the list goes on. You can only really see it from certain angles, and never by looking it right in the face. But it’s always there.

Ableism not only complicates our access to Pride events, but also to pride itself, as a feeling. When pride comes up alongside disabilities, it often sounds like this: “I’m so proud that you’re not letting cerebral palsy stop you.” As long as it’s “chin up, kiddo!” people can be plenty proud of us, and we’re expected to mirror them. We’re allowed to acknowledge and commend ourselves for not letting disability take everything, for finding a way to play with the big kids. And yes, hands up for making it work in a world that’s literally built for people who aren’t you. But that is pride in what we do—or, more often, what we can “still” do—rather than who we are.

That second kind of pride is almost unheard of, because it requires a fundamental reframing of disabled people. Not as damaged goods fighting our way to functionality, but as worthy in our own right. Not because we are just like able-bodied people, but because we are not. The easier way to assume we feel is the opposite of pride, which is shame. We make so much space for that shame in the way we think and talk about disabilities. People tell us we’re “so brave” for leaving the house and being seen in public. No one questions it if we haven’t dated in a while, or ever—because oh, of course we haven’t. Most media shows us grappling with our angst over what we cannot do and who we will never be. We are assumed, in life and fiction, to be sad people mourning what we lost (as if everyone starts with an able body), and only proud of how much we managed to recover.

I’ll admit I have a hard time feeling consistent pride in my body. I’m proud that I don’t try to hide my disability—at the same time, I also flinch when I catch my reflection in store windows sometimes. We all know there’s a lot of real estate between tolerating something and being proud of it, but there’s also distance between liking something and being proud of it. I like being disabled because I like being myself (which is radical enough for any woman to say). Pride, though, requires an even bigger risk.

Pride means willingness to take up space. It means believing in your own power and wanting to show yourself off. So it’s no wonder that it comes with such negative baggage. It’s a sin—I was only vaguely raised Quaker and even I know that. People tell us to temper our pride, as if it’s a volatile substance that will explode the minute it touches air. That if we are too proud no one will like us. And as disabled people, women, queer folks, we’re supposed to fight hard to be liked—because we’ll get nowhere if we’re not the Good Kind.

Could you imagine what would happen if we didn’t care?

After Orlando, I’ve realized that pride is one of my strongest and most dangerous tools. That in addition to checking in with my queer friends and, as a white cis person, stepping back and listening harder than I ever have, I need to get proud and stay proud. Not just of the parts that are easy to like—my achievements, the parts of me cerebral palsy hasn’t marked—but of the whole thing. Shame is a cousin of the hatred that fueled this attack; I can’t let it take up residence in me anymore. I have to stop in front of that store window and take a good, long look. I have to keep looking until I want to keep looking.

In her most famous poem, disability activist Laura Hershey referred to pride as a practice. It’s the most honest description I’ve ever heard. No one can expect to break a lifelong shame habit in one go. But:

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

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Carrie

Carrie's body is weird and she's making that work for her. She lives in DC by way of Los Angeles and has a conflicted relationship with social media, but you can follow her on Twitter and Instagram anyway.

Carrie has written 83 articles for us.

30 Comments

  1. It’s amazing how fast you have become one of my all-time favorite writers, Carrie. Everything you write moves me so deeply, touches some part of me that I leave unexamined far too often.

    (I would love to read more about you growing up Quaker, and navigating that past as a queer adult. Have you ever read a Girl Named Zippy? Haven Kimmel is my second favorite former Quaker.) (After you.)

    • Well now I’m tearing up, so thank you for the best possible start to my day (seriously). I have not read that book, but anything you recommend must be the best thing, so I will fix that posthaste.

      • (Will also recommend Haven Kimmel’s The Solace of Leaving Early, one of my favourite novels that is also just a warm bath of theological pondering, if that’s your thing. In opposite order, it might be the beginning of the journey that made me a Quaker.)

        On-topic, this was glorious. Thank you for writing it.

  2. Incredible. All the feels. Thank you for this, Carrie! From a fellow disabled queer…all the feels. Pride, both in terms of events and as a feeling is super hard for me, and I am striving to find a way to be part of it all. Thank you for your beautiful, spot-on articulation.

  3. it’s rare that i NEED to read every single thing someone writes/has written, but here you are

  4. Yes. This is a large part of why I was in tears during my first Pride. How could I join in with all of these people in full celebration when I knew deep down that I was concealing a disability and thus wasn’t accepting myself fully at all? How do I come into a community with an established means of celebration and say that many things that most of the community takes comfort from cause me overload that marks me as different and sometimes drives me away?

    I can pass, but I find it much harder to do so in queer spaces. The truth is always closer to the surface, and so it takes a great deal more emotional effort to conceal it. As a consequence, the casual and not-so-casual ableism I encounter hurts even more.

    I accept that I need certain things, and I can voice those needs more and more often. But there is still a part, perhaps even a whole, of myself with a name that I dare not speak.

    • Yes. I self-isolate from what should be my queer community because my queerness is inextricably bound with my mental illness. They are both aspects of who I am. I do have the privilege of being able to hide it for short periods of time, but the fear of being found out, the omissions I have to make from conversations about myself because everything that’s interesting about me and all of my good stories are about things I used to do, pretending I’m just currently unemployed rather than on Social Security because I don’t want others to see me as too much to handle, it all adds up.

  5. As I was reading your words Carrie I was thinking about my first Pride where I needed to sit and rest because one of my hips was giving me trouble after all the walking, some dancing, trouble with my support wear and someone felt the friendly drunken need to impart me life advice that I need to get up and dance or I’d regret it.
    I brushed it off because I could dance, embrace the music and the moment in a chair just as well on my feet and dammit that is what I did.

    And then I read that poem at the end.
    Melted like butter on pavement in July.
    Because that’s the truest thing and it hurts for every moment where I’ve been the one to destroy myself rather than be torn down. But it also touches like some kind of kiss for the moments where no one not even me tore me down.

  6. Every time I see disability-related articles on Autostraddle, my heart sings <3 Carrie, I love your writing.

    I find Pride events really hard to navigate because the amount of time I can spend standing up is so limited (especially if I'm going to be standing in one spot). Walking is easier than stationary standing but there's a limit there too. I've never been to a Pride parade, partly because I've rarely been in the right place at the right time but also because I worry about accessibility.

    The only Pride festival I've been to more than once was Oxford Pride, which was a much smaller and more relaxed affair than the big city Prides. It mostly involved sitting on the grass and I felt included during the afternoon events. (The evening events, being held in a club, were less suitable for me – but that's an issue with clubs in general.)

    Yes to the problems of feeling proud in the first place. There are certain things about myself that I'm proud of, but I guess still haven't really moved beyond tolerance of my disability. And because Pride is supposed to be a fun day for queer people, I worry about being an inconvenience and getting in the way, even though this is usually not an issue with my friends.

  7. It’s that intersection that people always ignore. Yes, it’s a day about celebrating being queer, but people with disabilities are queer too and it’s also a part of our lives.

    I think of the old Jewish joke about an Irishman who is converting. “But, Rabbi!” He says, “O’Malley isn’t a Jewish name!” The Rabbi smiles and she says, “But it will be!”

    That part of who you are doesn’t go away just because you’re also something else. EVERYTHING incorporates together and affects our views, feelings, wants, and needs.

    I almost never take my cane when I leave home because I’m afraid of how people will react. Especially when I can walk normally a lot of the time. I limp nearly constantly, but people who have known me for years ask, “Oh! What did you do?” Really? Like, the past fifty times you’ve seen me walk like this wasn’t enough? I can’t take my cane out when I need it unless I curtly tell people off or tell them my entire story. Naturally they either think I’m rude if I refuse to explain or are sorry they asked when they hear the whole spiel.

    I always worry, “What will I be perceived as if I do to X? What part of me will get ignored? What part of me may get HURT?”

  8. Thank you for writing this piece, I was drafting a very similar one in my head last night after being at Seattle Pride this weekend but woke up to see someone was feeling and thinking the same way. As a person with dwarfism and severe walking issues who identifies proudly and absolutely as a disabled queer, my eye was scanning the crowds for my comrades, hoping to make eye contact (if possible) and get nods of recognition. I often come back from Pride feeling even more alone than before I go (and almost always in severe pain). It is such a specific experience, being disabled and gay and it can be soul crushing to feel that the one place you should be able to feel pride is the place where you are reminded that you are not part of the equation.

    I recognized that not everyone has a visible impairment/issue so even more can understand how it is so easy to be lost and feel alone even at an event that is supposed to be in celebration of you. But I want all my fellow disabled LGBTQIA folks to know that I see you, and feel you, I know you are there so lets shout (or sign) our pride together!

  9. Well, now I’m crying. I feel these things so acutely being disabled and queer in Texas; most LGBT+ events center around clubs, parties, marches, and parades, often in over 100 degree weather. How can I help make signs for a protest when the room is on the third floor with no elevator? How can I honor the Pulse shooting victims when Dallas’s vigil is a two-mile march (each way!) followed by three hours of standing-room-only speeches? It’s hard not to feel ashamed when I don’t meet the basic requirements for Pride.

    This is just exactly what I’ve been feeling – the poem, everything. Thank you so much, Carrie. Every piece you write makes me feel so much less alone.

  10. Carrie, My mother was diagnosed with Multiple Sclerosis when she was 16 and went on to marry and have kids. She was married to my father for 50 years. She has been gone 2 now. She stopped walking 25 years before that and my father was her caretaker. He fed her, bathed her, gave her medications 4x’s a day and changed her diapers. He never had a day off. ~ I have a unique perspective having witnessed this my entire life… people don’t realize how much someone’s disability affects the ones that love them. Her disability shaped my entire life. In some respects its like I had MS. ~ YOUR ARTICLE WAS AMAZING AND APPLIES TO PEOPLE LIKE ME TOO! If you ever get to listen to the song I wrote about her life please do. And thank you for the article, Ed ~~ https://www.reverbnation.com/edalvut/song/5088766-why-me-ed-alvut-original

  11. Your writing resonates with me so hard. It’s almost like you were there at the Boston Dyke March where I felt so many of these same things. Feeling broken open by this and my own process of figuring out what all of it means for my wellbeing as a crip dyke. It’s tender, and scary and exciting – healing. Thanks for zeroing in on it with what you write, pretty much every time.

  12. Thank you you this post. I didn’t even attempt going to pride last weekend because my disability sometimes will cause fatigue and I did not want to deal with crowds using a walker. I’m always excited to see topics discussing LGBTQ disabled

  13. This was a beautiful and important piece, thank you for writing. What you pointed out about the ways that being proud is usually linked to disability will have me thinking for quite a few days to come.
    I’ve attended Pride for the last eight years and always by about half way through the day all I feel is incredibly isolated and alone because I’m blind, and so much of Pride is about this idea of seeing all the queerness and support around you, or navigating through incredibly crowded festival grounds to go towards booths that LOOK interesting. I usually end up spending the day sitting at my queer group’s booth but almost everyone who comes up to ask about our group won’t talk to me or if they do I don’t notice because it’s so loud and so many people are talking that the only way I could know they’re talking to me is through eye contact. Yet I can’t leave because it’s too crowded for me to ever find my way to the metro but all my friends have either disappeared or can’t leave the booth. So I just feel more and more isolated as the day goes on– perhaps moreso than I would in other contexts because Pride is supposed to be the place where we find community and feel good about ourselves for the most part it could be any other big group of people– I’m not even going to see the eight million rainbows let alone people who are like me; twenty genderqueer people with disabilities could pass right in front of me and I’d never know.
    So just, thank you for this post. It’s an important message, and kudos to you for articulating it.

  14. I somehow missed this when it first went up. I’m so glad I was scrolling back through. Thank you.

  15. this article is more important than i currently have the words for. my relationship with my body and my disability is complex at best, and pride is often a time that i feel it most acutely. i want nothing more than to spend a day surrounded by rainbows and loud queers embracing themselves, but rarely do i have the right combination of spoons and accessibility. fun fact! people’s favorite place to set up their blankets is across the middle of sidewalks bc it’s not squishy. coincidentally, the not-squishy is why i try to stick to the sidewalks

  16. Can I invite you to start an Autistic Pride Day event? Yes, there is actually such a thing–and this year we are celebrating Autistic Pride on Saturday, June 20. It is being hosted by the Autistic Pride Alliance on Youtube: https://www.youtube.com/watch?v=90JLB-MYbik

    The event originally started years ago in Brasilla, Brazil. It evolved over time into something specific to individuals on the Autism Spectrum as a way of allowing for us to set a day aside in which we could celebrate the awesomeness of who we are, and a way to show how awesome we actually can be. We gather in groups and clusters to celebrate our differences, to be proud of who we are.

    We utilize the neurodiversity symbol as our flag. We want to recognize the spectrum of unique individuals who are defined as atypical; that is those who are identified as having autism, Asperger’s syndrome, dyslexia, dyscalculia, epilepsy, hyperlexia, dyspraxia, ADHD, obsessive-compulsive disorder (OCD), and Tourette syndrome (TS). We strive for three things–Awareness, Acceptance, and Autonomy. We want acceptance for who we are, not what we are.

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