Feature image via Carrie’s Instagram
The first time I said I was gay out loud, I ran to the bathroom and threw up. I know what you’re thinking: repressive family, conservative church, red state, right? Well, sorry – none of that was true. My embarrassingly liberal parents (who are definitely reading this right now) raised us to not give a shit, whether about sexuality, societal expectation, or anything that didn’t make us happy. So I honestly don’t know how I came to hate being queer so much. We love to trace toxic thinking back to one source because it feels good to point the finger. But self-loathing rarely walks a path that neat. Logic won’t necessarily extinguish the shame in your stomach. And as certainly and instantly as I knew I liked other girls, I knew I didn’t want to.
I soon learned to call that feeling internalized homophobia. Mine simmered down after about three years thanks to more queer friends, a ton of sociological theory, and just not having the energy to feel that awful anymore. It’s like when your all-consuming crush on someone dies the second you admit it: as soon as I gave my queerness some air, I could settle into it. But it took almost a decade after that for me to treat my disability with the same care. I didn’t even hear the world “ableism” until my last year of college – and not because it came up in class, but because I stumbled across it myself. Let me say that again: in my left-wing dream of a liberal arts education, the kind that prides itself on exposing and unpacking prejudice, no one told me ableism existed.
That’s because it’s still completely acceptable for disabled people to hate ourselves. Expected, even. Most discussions of ableism prioritize its external forms: staircases without ramps, misguided offers of help, applauding disabled people for being “so brave.” Disability itself remains something we “tolerate” or “live with” (but would, of course, “fix” if we could). That kind of ableism – that turns us against ourselves by lying about what success, politeness, health, and independence look like – isn’t broadly acknowledged as internalized oppression yet. But we can still start unlearning it.
Here’s what’s worked for me so far.
1. Reading. A lot.
In that final college year, I came across an article called “Towards an Affirmation Model of Disability.” It outlined a concept called the “affirmative model,” which, in full academese:
… is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of life style and life experience of being impaired and disabled.
Translation: you can understand (and even enjoy) your disability as an identity. Not a medical condition, or bad luck, or a giant liability in your social, romantic, and professional life. It doesn’t exist in opposition to who you are; it is, in fact, essential.
I read that line at least four times before being able to move on. It sounds sad now, but I honestly didn’t know I could feel good about my disability. I thought coping with it was the best I could hope for. That was the language I knew; people applauded me for “dealing so well” and “not letting it affect me” all the time. But apply the affirmative model, and you start to see how backhanded those compliments are. They ask you to deny a fundamental part of yourself. And as a gay lady who’d been out for years, I was not in that business anymore.
That article introduced me to disability studies – and in turn, crip theory, disability lit, and disabled culture. I cannot say enough for the reading material I ate up during that time (and continue to seek out). It forced me to confront my own biases, revealed the kaleidoscopic nature of disability as a whole, and confirmed that not all disabled folks wish we were able-bodied. No one tells you that! Nondisabled people are happy to let you assume they know best and are the gold standard for a reason. So if you want anything other than the party line on disability (i.e. it sucks and we’re sorry), you need to consume work for and by disabled folks. Fortunately, there’s more out there than ever before, and not all comes courtesy of inscrutable academia. Look, you don’t even have to leave Autostraddle to get started.
2. Writing. A lot.
Ableism tells us that being disabled is fine as long as you never discuss it. You can still be likable if you downplay its effects – but talk about it too much or too honestly, and people won’t know what to do with you. No one wants to hear that. What a downer. Stop being dramatic. I don’t understand why this is such a big deal. Even if no one’s said as much to us outright, disabled folks learn to accommodate those points of view. We shut up and deal with our own problems so as to not further inconvenience anyone. We already take up so much space and time and energy; it’s the least we can do. Right?
Writing – first privately, then publicly – about my disability has allowed me to test that theory. And surprise, it’s mostly bullshit. Yes, some nondisabled people will either flinch or totally miss the point. But guess what: not everything is about them! And writing is what helped me realize that. Turns out I had a lot to say once I stopped caring about their reviews.
Disabled folks: if you’ve thought about writing, even in a journal only you will ever see, do it. No one tells our stories better than we do. Say it because it needs to be said. That is enough of a reason.
3. Finding disabled community.
I’ve lost count of how many times someone has said I “don’t look disabled” and expected me to thank them. For years, I obliged because I believed the same lie they did: that visibly disabled bodies count for less. As a white, cis, college educated, gainfully employed disabled person who gets around on her own two feet, I enjoy enough privilege to let those biases persist. Able-bodied people are quick to accept me into their fold; what they’re really saying is “you don’t scare me.” And while that felt good at first, it also allowed me to completely alienate myself from other disabled people – to the point where I didn’t have any disabled friends until last year. That’s well over two decades without any community. And truthfully, it could have gone on a lot longer and no one would have said anything. Ableism runs that deep.
After coming out, queer people are expected to seek our community near and far. It’s an accepted part of the process. You don’t have to be gay alone. But disabled folks don’t get that same push to find each other. The history of disability and social isolation is long and its legacy difficult to break. But thanks to the internet and the (however glacially) improving accessibility of the physical world, our community is more connected than ever – which means I had no excuse not to meet other disabled people. When I finally did, it made me realize just how much garbage I’d internalized about my own superiority and my comfort with certain bodies over others. Realizing how far the disabled community stretches forced me to reconsider my own boundaries, fight those reactionary biases, and do better. Able-bodied people can’t confront their ableism without knowing disabled people, and we can’t either. As with queerness, there is no way to do this by ourselves.
If you’re wondering where to start, Twitter, Facebook, and Instagram are packed with disabled folks (including many of these badass ladies) doing awesome work.
4. Going to therapy.
I understand this isn’t an option for everyone. But starting therapy allowed me to acknowledge a messy truth I fought for far too long: that being disabled is really, really hard. I shied away from admitting that because I didn’t want to run the risk of pity; it’s already hard enough to convince people I’m not miserable. But again, ableism is what tells us we have to put a smile on and make it look easy. It perpetuates this expectation that disability be easily identifiable, understood, and manageable. The truth is it’s none of the above. No matter how strong a handle you have on your access needs, how expansive your support system, how sturdy your day-to-day routine, eventually you are just going to be fucking done. There’s no way around it. And when that time comes, there’s nothing quite like an honest-to-goodness trained professional to get you some coping skills.
As someone who fears talking too much and becoming annoying (thanks to a lifetime of ableist and sexist socialization oh god this article is already too long please still like me), I find it extremely helpful to have someone in my life whose job it is to listen. Because I pay her, I don’t have to worry that I’m wasting her time. I can’t be a burden because I am actually helping to pay her rent. It’s the perfect solution for someone as compulsively polite as I am.
5. Using (and resting) my body on my own terms.
I’ve gotten to know my body by using it more. I exercise a lot. I make sure to get outside at least twice a day. I take the train to work more often than I drive (a feat of note for any LA resident). And figuring out what my body likes to do has helped me debunk two big ableist myths: that my body is disgusting and will forever remain a mystery to me. Disabled people are expected to loathe how we look, always feel awful, and defer to doctors on any and all matters of bodily function. We can refuse to engage with our bodies and no one will question it. In fact, that disconnect is encouraged – able-bodied people learn early on to “see past” our disabilities, as if they’re detachable from who we “really” are. Because who would want a body like that anyway?
Look, this is the body I have. Sometimes it frustrates me and doesn’t exactly behave, but it’s mine. And as I’ve figured out how to use it instead of hate it, I’ve realized it can feel pretty good in here. For example, did you know I’m an excellent canoer? All the upper body strength I developed to compensate for my legs really comes in handy while rowing. For me exercise does the trick best; maybe for you it’s massages, sex, or tattoos. Anything that helps you connect to your body makes it that much harder to despise. And for disabled people to like (let alone love) our bodies is revolutionary.
Ableism also enjoys reminding us that we’re lazy if we can’t keep up. For a long time I assumed that meant I had to say yes to everything in order to prove myself. If I could achieve the most and stay the busiest, then of course I mattered as much as able-bodied people. I was succeeding by any standard and leaving no room for doubt. But spreading yourself that thin will inevitably burn you out. It’s just as (if not more) important to prioritize rest. I’ve found naps to be an excellent antidote to ableist self-talk, but even just resting your eyes works.
Give yourself permission to do nothing. I promise it feels great.
I’m crying so hard. Thank you for this.
I’m not disabled, but I’m trans. And while the experiences are obviously different in many ways, much of the way you talk about relating to your body (and the ways others expect you to relate to it) hit home so hard. At least a half dozen times I read one of your suggestions or affirmations and when I applied it to myself I thought ‘yeah, right.’ So ya know, I’ve got some work to do.
I long for the community you describe. My experiences with the trans community and trans lit have been universally awful, in that it feels impossible to find trans people who don’t either (1) hide from their trans identity, and/or (2) espouse the self loathing stronger than anyone. I wish I knew where to turn. I’m not giving up. But this journey is hard when you feel mostly alone.
I wanted to reach out a hand and say I’m so sorry you’re isolated. I’ve currently found myself lacking a queer community in life, and I’m missing it awfully. Autostraddle has become so, so important to me during this time. I hope you’re finding some warmth here too, and I very, very much hope you are able to find a better trans community, even if it it ends up being a community of just one other person who really gets you xx
I share this sentiment. Even when I do have queer friends around me, it’s nice to know that Autostraddle is here when I don’t. I hope you find a community for yourself.
Interestingly, as a cis disabled woman, I have often felt the same way about trans narratives. In particular I think our media experiences are similar – playing us is a direct line to an Oscar! And in other people’s creepy fascinations with our bodies. I really hope you can find a supportive and proud community. Finding one for me pretty much saved my life.
Thanks! Yeah I’m not sure ‘community’ is even the right word. The idea of an Affirmation Model really stuck with me today. There are some really freaking incredible things about being trans, and about trans bodies, and I’ve literally never heard anybody talk about a single one of them in that way. Anywhere. In any context. Like the idea of an Affirmation Model among trans folks just seems nonexistent. Why? Ugh.
i wish i can give u a hug
I cannot click fast enough when I see a new article posted by you, Carrie! And as always, you do not disappoint – it’s amazing how powerful it is to see these things in writing and be reminded of the work left to do between me and my body.
The part I am doing the best on for now is the do nothing/rest part. My partner knows somebody touring with the Alabama Shakes, so I was recently offered the opportunity to not only go see them for free but also meet them and hang out a bit… but it’s the day after an exhausting medical treatment (that I get once a month), so even though it’s such an incredible opportunity I immediately knew to say no. Hard, but right for me.
Now to find some community, and a good therapist…
Awesome as always, Carrie. It’s impossible to read your work without diving deeply into critical analysis of myself and feelings.
God Damn do these posts make me feel things. While I am able bodies, I have been struggling with managing my mental heath a lot recently. Taking care of myself has never been a high priority, and it resulted in my physical health taking a nose dive.
A recent health scare has brought this to my attention and forced me to make changes.
Thank you for this post.
*bodied, not bodies. I can barely take care of one!
Thanks for this article.
Thank you, Carrie, for each and every sentence of this!!
I especially appreciate #5. In trying accept my body’s limitations, I’ve internalized a very ableist approach that’s like, “Well, at least my body can do X, which not everyone can, so I should feel grateful.” Thinking this way just makes me feel like a jerk (for implying that anyone who can’t do X is somehow lesser), and doesn’t actually help me feel good in my body. As I’m trying to unlearn this harmful pattern of thinking, the way you talk about getting to know your body through using it and resting it on your own terms seems like a healthier, affirming, empowering alternative.
Oh wow, that one hit home… I do that to MYSELF, since my disability comes and goes. When I’m in a mild relapse, I comfort myself with: “at least I can still walk! Not like that other time…” And then when “that other time” comes around again I fall deep into a hole of dissociation to cope. I hadn’t even thought about how I do that to myself… thank you for pulling that out of Carrie’s piece and sharing your own experiences.
^^^ YES THESE THINGS
Thank you for another amazing article. I can testify hugely as to what discovering a disabled community did for me. Up until that point, I had a state of gratitude to non-disabled people for trying. It was connecting with other disabled people that made me realise that I was entitled to as much as they are. Brilliantly written Carrie. And thank you Autostraddle for continuing to centre disabled women’s stories. I think you are the only actually intersectional feminist website that exists, because no others seem to recognise disabled voices as much as you do. So thank you thank you and thank you again.
Okay, now that I’ve cleaned the snot from my septum ring from crying and put on a pot of tulsi & yarrow tea to calm the pounding pain that always accompanies crying, I’ve come to leave a comment.
Thank you for this. Thank you for everything you write about disability. But also especially thank you for this.
Reading critical disability studies texts in college was extremely eye-opening, but I still felt like a patient on display rather than a person. As far as reading goes, it’s been personal pieces like this essay (and like Amy Berkowitz’s Tender Points) that have been the most empowering and transformative for me. Did I say thank you yet?
It’s been more than difficult to unravel the themes of broken-ness and damaged-ness in my self-conception. “Oh, I’m just broken” *light chuckle* was my bandaid for over a decade whenever anyone asked. I cut that shit out and started working on self-love a couple years ago, but I’m still doing a lot of avoiding rather than accepting, internally at least.
I’m not gonna lie, (this sounds ridiculous now that I realize it) I’ve never thought about seeking out disabled community. Never. Maybe because my condition is mostly invisible and I struggle with the whole “am I disabled enough to be disabled?” It seems silly, but I’ve definitely encountered imposter syndrome IN THE MIDST of a horrible pain episode. I really want community now. Wtf, why have I never sought this out..
Lastly. “For me exercise does the trick best; maybe for you it’s massages, sex, or tattoos.” Yes to all four of these, but they usually require another person and I hate asking for help (more internalized ableism to unravel :D ) *sigh*
On #3, creating community: I searched, and among 338 straddler groups I found only one related to disability – a private group with one lonely member. So in the interests of needing a disabled community myself, I just created the “So Brave” group. Join me!
(If you know of or run another group out there that just isn’t searchable with the terms “disabled” or “disability,” I’d be happy to join there rather than reinvent the wheel. But please make yourselves findable!)
I really appreciate all of your essays, Carrie. They mean a lot to me, especially as someone who is relatively newly disabled (I mean, it’s coming up on 10 years of struggling with mental illness that very much has been disabling at times, but it feels very different from a physical disability in the way that it incapacitates me).
And I definitely struggle to embrace my physical disabilities because they cause me so much pain and I can’t find anything good about that. And it’s hard because of how the medication to keep my pain under control really fucks with my mental abilities, especially my memory, which is something that has been a bit part of my identity (both self-identity and how other identify me), and losing a good deal of that functionality has been extremely hard. And it makes it harder because it makes reading and writing about disability infinitely harder because of how much more effort it takes for me to do those things, and there are a lot of days that I am just simply not capable of doing those things because of how sievey my brain is. It’s much easier for me to feel positive about my mental illness because there are aspects of it that are positive for me, even though sometimes things are pretty fucking shitty sometimes.
Finding disabled community has been very helpful for me though (despite most of it being online, except for my sister who has a litany of health issues that she’s still sorting out what exactly is going on with her body). It’s nice to have a place where I can complain about bad days without feeling like a burden because those people understand. It’s also nice to be able to talk about having good days without feeling like a fake disabled person or feeling like I need to constantly perform my disability to be taken seriously by others, as a lot of abled body folks assume that because I can do most things most days I am not actually disabled (there are not many disabled folks that are running class V-V+ whitewater (yet another thing that isolates me in the community sometimes unfortunately)).
I love every word of this so so so much. Thank you thank you thank you thank you.
Thank you so much, Carrie!
I struggle a lot with my internalized ableism, always feeling like I have to continuously prove myself.
I want to get to a place where I fully embrace all parts of who I am.
I commented earlier on this piece, but I just wanted to reiterate how much everything you write about disability speaks to me, Carrie, particularly this article. Internalized ableism is an evil, soul-destroying monster. I like these strategies for dealing with it.
Finally, something that’s not inspiration porn or pity porn.
I was lucky enough to find disability community easily, and to be surrounded by social model (not medical model) people, but it’s disappointing how sometimes not hating yourself can actually make you in some ways become more alienated because the less you hate yourself, the more you realize just how much most people do regard you as a worthless piece of shit whether they actually know you or not, and it’s much harder to put up with it when you don’t agree.
When I felt defective and apologetic, I felt more gratitude and appreciation for crumbs of decency from others. Now, I really have no use or patience for that crap, but it means that there are a lot of people who are really disappointing to me, when they seem to care about so many other things I care about, but are still thinking of me and other disabled people as lesser.
Disability liberation is not just “for the disabled”; it’s liberating for everyone when everyone and makes you re-evaluate so much about many aspects of life. Dismantling disability oppression makes a very deep and fundamental change in how you experience yourself and other people and the world overall– and when you are living in a world where everyone is truly recognized and valued, that includes all you all who are currently making exceptions to that rule.
Once you’ve experienced the alternative, the non-disabled culture and worldview feels extremely limiting and unhappy– it’s full of randomly drawn lines, bizarrely squeamish attitudes, and a kind of existential uptightness that is so stifling that I don’t know how anyone can bear it.
So I know this article was written a year ago, but thanks for it anyway! I’ve found my queer circle a lot easier than my disabled circle (although as a new Los Angeles resident from Chicago, I gotta start over and it’s fucking hard. Also, haven’t quite found my Asian circle, like, ever…). And yes, EXERCISE! I discovered adaptive rowing and it’s been amazing! I agree, my body is what it is and there are times I hate it and times I love it, it just isn’t consistent but that’s okay. It’s taken quite some time for me to just exist sometimes without having to worry about my disability. I went through the corrective surgeries (about 14) as a kid and while I don’t harbor any resentment or animosity towards that part of my past, I’m at a point now as an adult where I’m starting to just say “fuck it” more. It’s liberating, although not always present.
I’m always down for making new friends in the LA area, especially those who are part of my identifying communities! I would love to see a meet-up or something! Thanks for your post!
The mind is a problem solver and data store but it has a virus it’s call Conscious ( mental voice problem solving and judgement) which solves problems and makes up others just to solve something and never having silence within , babblers constantly in order to survive, judgement is for the same reason, life is not an experience it’s an observation, problem is your ears can trick you, as well as your eyes and mind at least that’s what I think…..