I was climbing the stairs of my elementary school shortly after the summer holidays, when I felt a hard smack against my sunburned back. I recall the sting and the boy who ran past me saying “gimp.” I was very confused. I’d never heard this word before and didn’t know what it implied. I knew that he’d said it with disgust and the slap had meant to hurt. I’d been taking the stairs one at a time, with my stronger leg leading, as I was apt to do. He’d seen this and became impatient, or he simply wanted to exert power over me. It was the first time I began to think I may not look like the other children. I went home and stood in front of the hall full length mirror. I walked toward it and was shocked. My whole body moved from side to side as I took each step like the wobble of an Oompa Loompa from Willy Wonka & The Chocolate Factory. Had this always been happening? How had I not noticed before? How come no one had told me? My cheeks flamed red with shame. I didn’t mention it to anyone.
I am a person with restricted growth (or little person or person with dwarfism), and I am queer. I was born with a rare condition that causes my bones and joints to form differently and has reduced my height to a compact 4’5″. I didn’t come out as queer until I was in my 30s. People asked me why it took so long. I come from a liberal family. I live in a mostly queer-friendly city in Canada, where we’ve had marriage equality for almost a decade. However this doesn’t make me immune to the pervasive homophobia which still envelopes the majority of social and cultural spheres in my country and around the world. But the deeper answer is that accepting my disabled identity was necessary before I could accept my queer one, and for me this has been a long, hard-fought struggle.
The disabled community uses the term “coming out” similarly to the GLBTQ community to signify when someone claims and accepts their identity as a disabled person, not in agreement with oppressive definitions of disability but as a valid and important part of their life experience. For many of us, even though we may have been born with our impairments and they may be visible* to other people, accepting or even acknowledging this fundamental part of our lives is far from given. I lived in denial for many years, a soul-destroying state as I’m constantly reminded of my physical differences or “abnormality” when dealing with the non-disabled world. My denial was more than a resistance to accept my physical self but also a denial that these differences made me no less worthy than a non-disabled person.
I swallowed everything that was fed to me, every day. Every stare, every curious glance, every condescending remark, every negation of my autonomy and strength, built and affirmed a deep, seething self-loathing. This poison ran through my veins punishing me at every turn. I had to actively deny that I existed at all to escape it. Many disabled people are careful to keep these kinds of thoughts hidden and choose not to voice them. It’s an agreement of what the non-disabled world tells us over and over, that we so often contradict publicly as it quietly seeps under our skin. The disabled narrative that the non-disabled world created wants to hear stories of “overcoming” my impairment, how I prove to everyone that I can do anything and everything they do. They want me to smile and be cheerful and grateful and use my disabled person’s “wisdom” to teach them about life and say trite things like, “The only disability in life is a bad attitude.” Figure skater Scott Hamilton said that quote and I have no idea what context this came out of but no matter, it’s offensive and ridiculous. I’m disabled by the world in many ways and it has nothing to do with my bad attitude.
I identify as a disabled person. Some people may be uncomfortable with the fact that I put the word “disabled” before the word “person.” Our current climate of language asks that we use “people first” terminology to emphasize our humanity and to recognize that we are far more than our social labels or categories. I agree wholeheartedly with the message using this order of terms sends. However, I believe in the social model of disability and under this view, I can’t have a disability because it exists outside of me. The social model was developed in the mid-1970s by a group of disabled activists in the UK who wanted to politicize the social, economic and political oppression they experienced. They separated the concept of disability from an individual’s impairment, to remove the belief that a person’s specific condition — whether it is physical, sensory, intellectual or psychological — is the root cause of any limitations or ‘disabling’ barriers they encounter. Instead they argued that “disability is something imposed on top of our impairment by the way we are unnecessarily isolated and excluded from full participation in society.”
Under this model, a person is disabled because social, cultural, and economic belief systems have been based on the idea that there is an “average” or “normal” human form and ways this form should function. The billions of people who have impairments or differences in their body or minds have been neglected to be included as part of the whole. Other groups can certainly raise their hand as comrades in this form of social exclusion and discrimination (patriarchy anyone?). But what’s valuable to remember is that impairment crosses all sectors of human life, all gender identifications, all ethnicities, rich or poor, it’s a common and prevalent part of the collective human experience. In fact one could argue it’s the most fundamental part of the human experience, in that we are all fallible, aging, vulnerable organisms. It was in understanding this model that allowed me to truly comprehend what I’d swallowed. It was not simply that I faced barriers or was considered a “freak” but that my existence had been left out completely; no wonder I worked so hard to remain in denial.
I can’t pinpoint when things started to change for me. There was no cathartic revelation of self-worth or love. I was constantly exhausted, emotionally and physically, my spirit was eroded, and I became aware that I was going to collapse under it all.
Sobriety was the first step. Getting out of my head had been my primary objective and drugs and alcohol helped immensely in this pursuit. I had made my mind hostile to myself; it was a danger to me so I learned to escape it. Making it safe was essential to remove the desire to run away from it. One of the harshest realities I’ve faced is when I stopped self-medicating and looked at myself, mentally and physically, really and truly for the first time. The anguish was indescribable but behind it was a strange sensation; it started slowly at first, a tiny inkling in the back of my mind. After it grew stronger I recognized it as a feeling of freedom, the slightest possibility that I could be at peace with myself.
It soon became clear to me that by coming to terms with being disabled I could also declare and celebrate being queer. I’d spent years straddling the line between in and out. I was unable to step over this line because it required an acceptance of self I did not possess. I kept my queer identity at bay because to take it on would’ve broken me. Possessing it meant I could no longer ignore the other parts that are fundamental to my identity and being queer is one of these fundamental parts. People sometimes suggest that the GLBTQ community is more accepting of diversity and acknowledging the struggles of other oppressed minorities. Like many people, I find this is more rhetoric than reality. The same prejudice the non-disabled world places on disabled people is alive and well among many queer people and in queer spaces. Being queer doesn’t help me accept being a disabled person. In fact it’s the reverse: being disabled, or the recognition of this, allows me to accept and ultimately celebrate being queer.
Disabled people are sometimes asked, “If you had a choice, would you choose to be a non-disabled person?” This question is inherently oppressive; underneath it there’s the insidious and softly whispered belief that “we are better dead than disabled.” I used to refuse to contemplate this question; it was laden with what I feared of myself the most, that I’d like to extinguish my existence altogether. But here’s the answer I have worked so hard to not only give, but believe, and then live by. Yes, I would choose it. Being disabled, being queer. I would choose me. The broken parts that can’t be put back together, the angry parts, the parts that are in pain, the parts that are rejected, the parts that go unnoticed, and the parts that despair. I would choose it all, every time.
I’ve never liked the term “to overcome” which is so often used when we speak of adversity, as if one could vanquish all barriers if only one is strong enough. Instead the term “to make peace” has always resonated with me. Making peace for me was about laying down my sword in the battle against myself. To stop perceiving myself through a filtered lens of what I should’ve been or how others may see me. And to also recognize that I’ll never stop encountering prejudice and barriers and rejection, but that I can channel the energy that I’d wasted on destroying myself in other more powerful ways. I still have a lot of fight in me.
The other day I saw a glimpse of myself as I walked past a mirror. I momentarily reacted as I would have years ago, feeling a rise of shame and a sinking feeling of sadness. Then I found myself saying, “I thought you had made peace with that,” and then I remembered I had, and kept going.
*I would like to acknowledge that some terminology used in this essay can be considered exclusive of some people’s physical, sensory, psychological and intellectual experiences. As well that my personal lived experiences and beliefs are not necessarily shared, nor can they be extrapolated to any other disabled person.
Reading your story, which you shared so honestly and deeply, has moved me. Thank you for writing it. And thank you to Autostraddle for creating this space for people to share. I don’t think it’s hyperbole to say this website is a life saver.
I just wanted to thank you for your honesty and vulnerability. I love the part where you said< ". But here is the answer I have worked so hard to not only give, but believe, and then live by. Yes, I would choose it. Being disabled, being queer. I would choose me. The broken parts that can’t be put back together, the angry parts, the parts that are in pain, the parts that are rejected, the parts that go unnoticed, and the parts that despair. I would choose it all, every time."..You articulated this so well. We are a collection of ALL of our experiences.. all of them make us the people we are now.. cheers to you!! ALL of you :)!!
That line made me cry. Really extraordinary piece, Lesley. Thank you.
Beautifully written. The honesty and vulnerability are touching and inspiring at the same time. Thank you for sharing something so private. I love that you used the phrase “laying down my sword in the battle against myself”. I think on very different levels we can all take away something to use in our own lives.
Awesome writing!
I obviously cannot relate to a huge chunk of the content, but I feel compelled to share this, for what it’s worth.
I’ve always been very small. As a child I was usually the smallest in my class, and today I stand a very proud 5′ tall. I’m also a very dark-haired brunette.
Once when I was 7 or 8, a little boy asked me if I had a “disease”. I frowned and said “No, why do you ask?” And he pointed at the dark fuzz on my arms and he replied : “Because you’re short and hairy, it looks like an illness.”
This incident caused me a lot of sadness. I wondered if “everybody” thought that about me. I started noticing how my arms were hairier than other girls’.
A few words from an uneducated person can do so much harm. Today I feel a lot of sadness for kids who are taught by their parents that difference should be feared / laughed at / rejected. When kids naively ask their parents : “What is “wrong” with this person?” and then point at a disabled/different-looking person on the street, and when they only get “Don’t point at people it’s impolite!” for an answer, it really teaches them that being disabled is a taboo, and that all bodies/people who don’t fit the mold shouldn’t even be looked at / spoken about. Kids learn fast. Maybe parents don’t teach their kids to properly insult the disabled / queer / dark-skinned people, but every time a child’s curiosity is met with silencing or snide remarks, he or she still learns segregation, in a very insidious way.
Thanks for the lovely article!
I would like to add, because it just occured to me that I never think of mentioning it : I did grow up to find out I suffer from a genetic condition (it just has nothing to do with my height/hairyness, haha).
It is called Pseudoxanthoma Elasticum. PXE mostly affects the skin through mineralizing it, and then the eyes, and then the arteries / cardio system. Shit usually only hits the fan after the 4th decade of life though, so I’m currently enjoying the no-side-effects-yet thingie. :)
Look it up, learn something! :D
This article is very important to me because the one identity I still really struggle with is being disabled. I have accepted that I am a trans woman and that I am only attracted to women but moving through the world as disabled is something I even have trouble saying. Until a few years ago I wouldn’t even call myself disabled. I would say I have medical problems that prevent me from working and getting around is difficult.
If I am completely honest with myself I can admit the main reason I have never been in a relationship is because I don’t want people to be burdened with my disabilities. I still feel like being around me is something people have to put up with. In the same way as when I transitioned and had to deal with some amount of internalized transphobia I now realize I have something like internalized ableism? Is that a term? It should be. I am happy to see that you have come to a place of accepting that part of you because it gives me hope that I can get over these feelings at some point. I know logically the people in my life do not view my disabilities in a negative light but at the same time I have been told so many times by other people and by culture in general that people with disabilities are to be pitied and looked down upon. Getting over those feelings is a huge thing.
I am rambling so I will just say this article is fantastic and thank you for writing it.
You have touched on something very real, internalized ableism. It is a term actually and unfortunately a very real source of oppression. I understand the reticence to claim being disabled or having an impairment, I would refuse to speak those words as well. These things can’t be forced and you have already been incredibly brave with declaring and living your gender identity. I am so glad you found something of value in my story. Remember to be kind to yourself, but I know it is easier said then done. It is my hope that eventually haven an impairment is seen as neither good not bad but simply part of life. Wishing you the best.
Thank you all for your wonderful comments. I am so glad this piece has resonated with some. I believe strongly that unless we discuss these issues in the open and with honesty we will not be able to support each other (disabled or not) in being our authentic and free selves. I admit I am feeling a bit exposed as these are some of my most personal thoughts but also glad that others may find something in them that is meaningful. Thanks again.
I didn’t even notice you were little, The first thing i noticed was your gorgeous face! :D HEY…
This probably makes me a bad person, but I have to confess that I clicked for the pretty lady, and then stayed for the amazing article.
That makes the two of us. We are bad queer ladies! Don’t blame us. :( Blame lesley’s gorgeous genetics. :D
Thank you for sharing your story. This community we have here has provided a space for truly eye-opening stories and experiences to be shared, and everyday I learn something that challenges the way I perceive the world. So thank you, Lesley, for adding one more beautiful voice to this place.
(Also, fellow Canadian shout-out!)
Thank you for your comment. I agree it is so vital to have open and honest communities where we can feel free to share, eh :)
wow, there’s so much here to relate to, & so much that is distinctly personal, & i thank you so much for sharing it all with us.
your final two paragraphs hit me in ways i’ve never felt before. those words, “laying down my sword in the battle against myself” and “top perceiving myself through a filtered lens of what I should’ve been or how others may see me” rang so true to me as a trans person, which is a wholly different experience than being disabled but i hope you don’t mind me finding solace in them.
and your final paragraph really struck me, not only as a trans person, but as a person with Type 1 Diabetes. i don’t consider myself disabled because i feel, personally, like that’s co-opting a term from people whose experiences are fundamentally different from mine, but it’s still an invisible condition (except when people notice my insulin pump), & its a constant condition that i will never not have to deal with (i was diagnosed at 3 years old, so i have no idea what it’s like not to have this affliction).
i love that your article acknowledges that making peace doesn’t mean 100% 24/7 acceptance — that sometimes you’ll have moments when you want to pick up the sword, & sometimes you WILL pick up the sword, & sometimes you’ll back down & sometimes you’ll find yourself with both sword AND shield, but you just try to love yourself as best you can.
anyway, thank you for opening up to us & letting us open up in return. <3
I love this: “I believe in the social model of disability and under this view, I can’t have a disability because it exists outside of me.” It reminds me of what I often tell my adult students who struggled to succeed in the traditional education system: “You didn’t fail at school, the school system failed you.”
A strong piece. Beautiful writing with good points. Have you ever checked out Alison Kafer’s book Feminist Queer Crip? It’s academic and I haven’t gotten through a lot of it but she is such a badass (like you!) and writes really well about the intersections between disability and queerness, so you should look into it! I met her and she was also super nice. Oh, um, you’re also really pretty, by the way.
Thank you for writing this. I really enjoyed reading it. There were quite a few parts that reminded me of a book I read recently. It’s called Exile & Pride: Disability, Queerness, and Liberation by Eli Clare. He makes similar points, especially with regard to viewing disability as a social oppression rather than say an impairment. It’s a great read just like your article.
This resonated with me so hard. My vision impairment means that I can’t drive a car, and even when public transportation is accessible, most street signs, bus numbers, etc are unreadable to me. Technology is accessible in some ways and isn’t in others. I never put it together until just now that this is an example of the ways in which “we are unnecessarily isolated and excluded from full participation in society.” It means that accessing queer community in physical and virtual spaces is difficult, which has had a huge impact on how I see myself as a queer person. A very sincere thank you to the author of the article.
Thank you so much for writing this! These lines have been running through my head all day: “I had made my mind hostile to myself; it was a danger to me so I learned to escape it. Making it safe was essential to remove the desire to run away from it.” I hadn’t even thought that that was possible, but now it makes so much sense, so – thanks.
so you identify as a disabled person in the sense that you identify a person who is socially perceived/coded as disabled, rather than identifying as someone who is impaired? What an interesting use of language. Really great also to read an honest account of the GLBTQ community’s attitude to diversity. Thanks for a thought-provoking and well-written article.
I obviously can’t speak for the author, but I understood it as not just perceived/coded, but disabled by society, i.e. it is the lack of support/infrastructure in society that causes the disability rather than the person’s condition.
Yes that is correct Chandra, it is the separation from an individuals impairment (which can also be a complex concept) from disability which I view as socially caused. I identify as a disabled person who has a physical impairment.
Thanks to both of you for your kind words.
Lesley, thank you. This is powerful! I identified with so many of the emotional aspects of your story including the exhaustion of denial, getting sober, and the long journey to self acceptance. This also gives me a different perspective and lots to think about. Many thanks + well done!
This is my favourite article that I’ve read on AS in a while. Thanks Lesley.
This was fantastic, thank you. So powerful and moving. I know you said upthread you felt a bit vulnerable putting this stuff out here and I just want to acknowledge that and thank you for it.
yep, fine with being queer here. Disabled? I’m struggling. Am I disabled “enough” to claim that word? Am I limiting myself by saying I’m disabled? Admitting defeat?
I’ve worn glasses (unrelated to my disability) since I could walk. I can’t remember not having them. People used to ask me if I could have ‘perfect’ eyes, would I choose to do so? Now they ask why I don’t just get laser surgery. The truth is, doing so would feel like I was saying there was something wrong with me. I’m so used to my glasses, it would feel weird to not have them. They’re me. But I still feel embarrassed and ashamed that I wouldn’t ‘fix’ my eyes if I had the choice. And most people don’t even view having glasses as a really big problem.
My disabilities are neurological. Some of them have names and some of them have long names which are really just descriptions. I don’t talk about them that much because people get uncomfortable. Maybe because I’m uncomfortable. And mostly I’ve figured out how to live my life so it’s ok. My apartment is set up a bit differently from how most people would do it. I go to the grocery store every day because I have simply decided to not waste my energy on trying to plan meals ahead of time. But it feels lonely having this thing which I guess I could name but if I try to, I’m told ‘oh you’re so smart, you can do anything!’. Thanks, for totally misinterpreting what I just said and erasing my experience.
I am just so excited to see the social model being used on Autostraddle. Being brought up in UK disability politics makes it hard for me to adapt to the first person language on American websites, it’s brilliant to see both co-exist here.
Thank you for sharing Lesley, and explaining the theoretical background so well :)
I had to make an account to comment on this article. That’s how strongly I felt the need to say thank you for sharing this essay.
The battle to accept/embrace oneself is a real one. You eloquently gave voice to that struggle. Thank you. I’m going to keep a link to this essay so I can read it when I feel overwhelmed.
Bookmarking this one. I’d love to be able to read that Master’s thesis… is it available on WorldCat or some other database?
Hi Shannon,
My thesis is not available online yet, hopefully soon through the Disability Archive at the University of Leeds, UK. It focuses on the experiences of people with restricted growth in their interactions with strangers in social spaces.
Thanks!
You’ve said so much here that I’ve tried and failed to articulate myself. The straddling is something, as a deaf person who doesn’t sign, that I’ve struggled with my whole life. I am going to re-read this multiple times, I’m sure, as inspiration for putting my own experience into words worth reading.
Firstly, you write so beautifully! Thank you for sharing your story with us. I know that it has resonated with lots of people and I want to let you know why it has with me. I really liked what you said about “overcoming”. I’m not one of those people to take the bull by the horns or smile in the face of adversity – call it shyness or anxiety or whatever but something holds me back. I never felt strong enough to overcome. I can, however, relate to making peace. I think that is such a perfect phrase and putting a title to the current journey I am on makes it that little bit easier. So thank you so much for your insight!
I was positively thrilled to find this article on Autostraddle! It is so rare to find articles written by disabled queers, and this disabled queer’s heart is doing all the things. Please please publish more like this! And thank you, Lesley, for sharing and being so vulnerable with us. This article grabbed and moved me in ways I can’t quite articulate. I so related to needing to accept being disabled as a political identity before being able to come out, as this was precisely my experience. Thank you for such a beautiful article. AS, publish more!
What a well-written and interesting article. I really like that you talked about “coming out” as disabled. I feel like it’s often used as an exclusively queer term, but I can tell you that coming out as a person with a mental illness was actually a lot closer to the “traditional” coming out experience than my coming out as queer. And I really did have to accept my mental illness before I could even begin to accept my queerness. Good to know that I’m not alone :)
Also, I think you’re really pretty :)
This article blew me away. Thank-you for writing with such depth, vulnerability, and sincerity. And thanks for linking in the social model of disability. Great read :)
I linked your article in a blog post I wrote. http://bit.ly/Taym3X
Write on lady, look forward to seeing more articles written by yourself.
I just reread this article for the millionth time and feel so incredibly affirmed, as a disabled queer every time I read it. I, too, live in a liberal area, come from a liberal family, the works, but am also finding that accepting my identity as a disabled person is super necessary before I can fully embrace my queerness. Despite having tons of queer-affirming friends and family, I’m still only out to a few people. Your article is giving me strength to continue to work to change that. Thank you. And I love your use of to be at peace with instead of to overcome. If I hear one more person tell me I’m overcoming my disability, I might scream. Thank you so much for your vulnerability in sharing your story. I would love to see more articles by disabled queers on AS!
I just came across this whilst browsing the archives, thank you so much for sharing, I feel it has opened my eyes a little more to the world. I do have one question, how do you think queer spaces can become more inclusive to people with disabilities?