Bodyqueer: a Term For All People With Non-normative Bodies
A little while ago, my wife invented (as far as I can tell) the term “bodyqueer” and as soon as I heard it I really loved it. This post is to share what I think it means (or should mean) and why I love it so much. Of course there’s no controlling the definitions of words: people will use it how it makes sense to them, but I don’t think there’s any harm in trying to express what it has meant to me as I’ve been developing the ideas for my personal use.
To describe it as succinctly as possible, I’ve never felt totally comfortable with the “disabled” label, feeling that a lot of my associations with the word don’t apply to me, such as being unable to work and needing government assistance. By contrast, I relate strongly to the concepts introduced here under the word “bodyqueer” because I have experienced the effects of certain norms directed at my body and felt the impulse to resist those norms. In addition, I have had discussions with others who don’t neatly fit the “disability” label which suggests that the word sometimes describes their experience too, building connections and solidarity.
Of course I am only one person with a specific set of identities and experiences — I cannot speak for everyone who might have a vested interest in this topic. For example, I’m not particularly queer in the sex & gender sense of the word, my push back against sex and gender norms doesn’t extend much past maintaining my favorite colors are purple and hot pink. So I welcome feedback and constructive criticism; if this word is to become more broadly known and used, it will certainly benefit from the insights of more than just the few people I’ve talked with about this, especially those with different identities from my own.
With all that said, onward to the essay which consists of three parts: an extremely brief history of the word “queer,” an attempt to define bodyqueer, and finally a list of four norms that bodyqueer folks are affected by and for each one a related concept developed by bodyqueer folks to actively resist the norm.
An Extremely Brief History of the Word “Queer”
Starting around the 16th century, English speakers started to use the word queer to mean strange, eccentric, unwell, or not quite right. Early examples include “queer feeling” (uneasy sensation), “looking queer” (seeming ill), and “acting queer” (doing something odd). When applied to people, it often took on the meaning of someone who didn’t follow social norms, i.e. a non-normative person, as this example from John Muir written in the late 19th century.
Dwelling apart in the depths of the woods are the various kinds of mountaineers, —hunters, prospectors, and the like, —rare men, “queer characters,” and well worth knowing.
Sometimes “queer” was used to refer to people with cognitive or behavioral differences, meaning those with mental illness or differences in sexuality or gender. I’ll quickly note, as it will be relevant later, there has not always been a clear distinction between the categories of “mental differences” and “sex or gender differences,” with the first psychologist handbook (DSM-I) published in 1957 including homosexuality in the category of “sexual deviation.”
By the early 20th century, “queer” had gained its pejorative sense of an unacceptable variation in sexual attraction primarily of men towards other men. It also was used to refer to men with non-normative gender presentation, along with “fairy” and other pejorative words. At the same time within the gay male subculture, the word “queer” was used in a different sense to refer specifically to gay men with normative gender presentation, i.e. stereotypically masculine gay men.
In the late 1980s, parts of the LGBT community began to reclaim the word “queer” by self-identifying as queer. Joshua Gamson insightfully explains how different members of the community felt differently about the word in “Must Identity Movements Self-Destruct? A Queer Dilemma.” On the one hand, the word gained a sense of resistance:
Queer thus asserts in-your-face difference, with an edge of defiant separatism. “We’re here, we're queer, get used to it,” goes the chant. We are different, that is, free from convention, odd and out there and proud of it, and your response is either your problem or your wake-up call. Queer does not so much rebel against outsider status as revel in it. Queer confrontational difference, moreover, is scary, writes Alex Chee (1991), and thus politically useful:
“Now that I call myself queer, know myself as a queer, nothing will keep [queer-haters] safe. If I tell them I am queer, they give me room. Politically, I can think of little better. I do not want to be one of them. They only need to give me room.”
This goes against the grain of civil rights strategists, of course, for whom at least the appearance of normality is central to gaining political “room.” Rights are gained, according to this logic, by demonstrating similarity (to heterosexual people, to other minority groups) in a nonthreatening manner. […] The point is to be not-different, not-odd, not-scary. “We have a lot going for us," Phyllis Lyon says simply in the Bay Times. “Let's not blow it” — blow it, that is, by alienating each other and our straight allies with words like “queer.”
I certainly resonate with both the impulse to be considered “normal” as well as the impulse to resist easy classification. But regardless of the preferred strategy of anyone in the movement, this effort to reclaim “queer” seems to me to have been largely successful, with many neutral or positive uses of the word becoming common, such as academic disciplines (e.g. “queer studies,” “queer theory,” and “queer theology”) and culture (e.g. “Queercore,” “Queer eye”). As a non-queer person who grew up in this era, my associations with the word “queer” are almost entirely positive, though I recognize this may not be the case for everyone of my age (and certainly is different for different generations).
Given its newfound positive associations, the word queer has started to be combined with other identities. Of particular relevance is the word “neuroqueer” which was introduced by Nick Walker, Athena Lynn Michaels-Dillon, and Remi Yergeau. In an essay titled “Neuroqueer: an Introduction” Nick Walker provides an extended definition, a small portion of which is reproduced here:
I originally conceived of neuroqueer as a verb: neuroqueering as the practice of queering (subverting, defying, disrupting, liberating oneself from) neuronormativity and heteronormativity simultaneously. It was an extension of the way queer is used as a verb in Queer Theory; I was expanding the Queer Theory conceptualization of queering to encompass the queering of neurocognitive norms as well as gender norms––and, in the process, I was examining how socially-imposed neuronormativity and socially-imposed heteronormativity were entwined with one another, and how the queering of either of those two forms of normativity entwined with and blended into the queering of the other one.
Nick Walker differentiates “neuroqueer” from “neurodiverse” and “neurodivergent” by incorporating an element of active resistance to unhelpful norms. In addition, she crucially points out the interdependence of neuronormativity and heteronormativity.
Altogether, the word “queer” has gone through several significant shifts in meaning over the course of its existence, and the intense work the queer community put in to reclaim the word has paid off in a big way, continuing to inspire many people on their journey to liberation.
Defining Bodyqueer
If reclaiming the word “queer” has been so wildly successful, then why can’t we do the same thing in the disability community? In fact there is a push to do just this for the word “cripple” and its catchier version “crip,” both of which have a very similar subversive connotation as queer. This has resulted in new positive language, such as “crip time,” and the popular film “Crip Camp,” among other uses.
One limitation, however, is that the word originally referred primarily to physical disabilities, leaving out sensory, mental, learning, or other forms of disability. This may be only a temporary limitation, as the definition of “crip” is expanding in popular usage to include other forms of disability as well. A more serious limitation is that some of the same norms violated by disabled people — beauty norms, health norms, etc. — are also violated by people not usually considered disabled, such as fat people or little people or people with skin conditions or pregnant people or old people or … the list could go on and on.
Given enough time, perhaps “crip” will come to include all these bodies, which is a situation I would fully support were it to happen. But I’d like to propose a different, more timely approach. Perhaps we can capitalize on the success of queer folk in reclaiming “queer” and build on it, especially given the disability-related origins of the word as mentioned earlier. Quite simply, I’m proposing the use of “bodyqueer” as an inclusive term to refer to all those who violate, passively or actively, certain norms related to bodies.
In addition, I and others in the deaf community (and outside of it too) find that “disabled” doesn’t always match our experience of our body. Although the idea of “assistance” is mostly a fiction given everyone’s complete dependence on one another, it forms an important component of most definitions of disability, one that I don’t particularly relate to. My deafness appears more as a difference in language and culture than as a handicap or disability. However, having a body that transgresses certain norms and actively resisting those norms powerfully captures my experience.
I hope this word can build connections between people who may have similar experiences across a variety of “conditions” or “impairments.” By focusing on the norms rather than the bodies, we might be able to share our experiences of such violations across traditional classifications of bodies. A fat person and a paraplegic may share an experience of being told moralistically that they are responsible for their own condition. A little person and a blind person might bond over the experience of infantilization. And these experiences are not solely experiences of oppression: the moment when someone asks about my deafness with genuine curiosity is a special one.
I’d like to clarify that I mean “body” here in the holistic sense of the term “bodymind” that disability scholars use, or the interdependent sense of the term “namarupa” (literally “name-form”) that Buddhists use. Thus neurodivergent folks fit perfectly into the category of “bodyqueer” as well, even though minds and neurons are not explicitly mentioned in the word itself. Not only are minds and bodies inseparable, the norms that neurodivergent folks violate are often body-related, as stimming or self-harm.
Bodyqueer can refer to both an identity and an experience. Suppose you’ve broken your leg and need crutches or a wheelchair for a short period of time, or you’re pregnant and feel ill constantly for a few months. These are certainly bodyqueer experiences and can build connections between different types of people with different kinds of bodies. However, there’s a unique type of experience from having lived a bodyqueer experience for very long periods of time (years or decades), that seems better suited for a bodyqueer identity than a shorter-lived experience.
Another clarification I should make here is that “bodyqueer” is not to be confused with “queer-bodied” or “queer bodies” which I take to refer specifically to the bodies of those with non-normative sexual orientations or gender identities. I maintain that there’s a distinction between these terms, but this is not meant to separate people into distinct groups: queer-bodied folk can still have bodyqueer experiences, as when they contradict beauty norms through alternative gender presentations. As with “neuroqueer,” bodynormativity and heteronormativity are interrelated and interdependent, you can’t have one without the other.
This interdependence is supported by a number of connections between the queer community and the disabled community, but one of the most important is the fact that unlike race or ethnicity, a child may have a different body identity from their parents. In fact, bodyqueer identities are often actively resisted by family members. This is what Andrew Solomon refers to as a “horizontal identity” in his foreword to “Deaf Gain: Raising the Stakes for Human Diversity.”
American movements toward liberation have proceeded in single file: religious tolerance was a founding principle of this country (though one that still seems to elude many citizens); women’s suffrage came next; then began the civil rights movement aimed at racial equality. These movements all related to vertical identities: those passed down generationally and therefore reinforced by parents from the very start. The second wave of civil rights is for horizontal identities, those that people do not usually share with their parents and must therefore learn from a peer group. These are often the target of parental attempts at cure. First among these was the gay rights struggle. Deaf liberation came next. It has spawned a larger discourse about disability and difference, just as the fight of African Americans for inclusion fueled a broader conversation about multiculturalism and diversity. Each of these progressive transformations has aspired to twin objectives: to foster celebration among those directly affected by given conditions and to increase tolerance among the general population. The two goals are linked: personal exuberance is facilitated by an open society, and social acceptance emerges when the people directly affected have good self-esteem.
It is these values I hope to promote by introducing bodyqueer: celebration and tolerance, pride and access, connection and understanding.
What Norms Do Bodyqueer People Violate Anyway?
As helpful to some as it might be to list out every single norm related to bodies, this would be impossible due to sheer size and the fact that the list would vary from context to context. Instead, I’ll try to build a few connection points for people to relate their experiences to one another.
These connection points are structured as pairs, including with the norm a powerful idea forming a basis of liberation from the norm. Of course there may be other bases of liberation not included here. The reason for this structure is similar to the reason for introducing “neuroqueer” as an alternative to “neurodiverse” and “neurodivergent” — the active seeking of liberation is an essential part of queerness.
Connection Point: Ability Norms vs. Universal Design
Let’s start with the one I have the most personal experience with — ability norms. Basically, society labels certain abilities or actions with “humans normally can do this without assistance,” which includes stuff like walking, speaking, driving, listening, working, having sex, eating, and much more. The things that count as “normal human activities'' and the things that count as “assistance” have been somewhat recently categorized, and categorized largely by the medical establishment, a source of much frustration in the bodyqueer community. What makes hearing aids and wheelchairs assistive technology, where glasses and bicycles are not?
Weakness of definition aside, I want to point out two negative effects of these norms. First, many spaces and modes of interaction are constructed for the “average person,” leading to spaces that are inaccessible to those who are not “average” enough. Common examples include stairs, audio-only communications, poor color contrast, and complicated interfaces, to name but a few. The second negative effect of these norms is the way they affect the way a person is perceived and the assumptions that tend to be made about non-normative bodies.
A first point of connection arises from this second harm: what it *feels like* to be on the wrong end of an ability norm. For example, I know what it feels like to be talked down to by a doctor due to assumptions about my abilities, and this connects me to a variety of people who share similar experiences. People like me have experienced this infantilization due to gender stereotypes, racial stereotypes, short stature, or the use of a second language — among numerous potential causes. To share a similar experience means to understand, at least a little, the bodyqueer experience.
A second point of connection stems from the harm of inaccessible spaces—bodyqueer people are addressing this by promoting the principles of “universal design.” In essence, rather than designing for the “average user,” the principles suggest designing for use by everyone, or as close to it as possible. Often, this means giving several options for engaging with something so that users can engage with the one that makes the most sense for them. The options should be flexible, equitable, and intuitive (hint: it's not equitable to say “oh the ramp is around the back by the loading dock”).
An example that I think illustrates the principles of universal design particularly well is recounted in the book “The End of Average: How We Succeed in a World That Values Sameness” by Todd Rose. The author tells the story of the Air Force investigation into plane crashes in the late 1940s. After ruling out pilot error and mechanical failure, they looked to the cockpit design itself. To simplify the designs, the Air Force had taken measurements of hundreds of pilots and built a plane according to the average of the measurements. Then they hired pilots that fit the plane. However, Lt. Gilbert S. Daniels had a hypothesis that this approach to cockpit design was causing the crashes, and he set out to prove it. Daniels collected data on the 10 most relevant physical dimensions from 4,063 pilots. The result:
Out of 4,063 pilots, not a single airman fit within the average range on all 10 dimensions. One pilot might have a longer-than-average arm length, but a shorter-than-average leg length. Another pilot might have a big chest but small hips. Even more astonishing, Daniels discovered that if you picked out just three of the ten dimensions of size — say, neck circumference, thigh circumference and wrist circumference — less than 3.5 percent of pilots would be average sized on all three dimensions. Daniels’s findings were clear and incontrovertible. There was no such thing as an average pilot.
[…]
Daniels published his findings in a 1952 Air Force Technical Note entitled The “Average Man”? In it, he contended that if the military wanted to improve the performance of its soldiers, including its pilots, it needed to change the design of any environments in which those soldiers were expected to perform. The recommended change was radical: the environments needed to fit the individual rather than the average.
To their credit, the Air Force took this to heart and required their cockpits to fit pilots whose measurements fell between 5% and 95% on each dimension. Manufacturers complained loudly that it was too expensive and time consuming. But the Air Force didn’t budge, and when forced to solve the issue, engineers came up with solutions that were cheap and easy to implement—like adjustable seats, technology widely used in cars to this day.
This story neatly explains the principles of universal design—designing for the average works for a few people for a while, while designing for everyone yields new technologies with unexpected benefits. Ramps and curb cuts are useful not just for wheelchair users, but also those who are elderly, pregnant, on crutches, rolling luggage, or pushing strollers. Captions are useful not just for deaf and hard of hearing folks but also for language learners, including kids. Image alt-text is useful not just for blind folks who use screen readers but also for search engines. The list goes on and on.
But many designs are still built according to the fiction of “average” people. The design enhancements made to Air Force planes, as in the example above, have ironically not made their way to modern airlines, which are famously bad at handling different types of bodies. Public city buses can easily handle wheelchairs, but airplanes cannot. Public city buses can handle fat people but airplanes cannot (easily). Public city buses announce stops in text and audio but airplane announcements are audio-only (and therefore entirely inaccessible to me). Of course airplanes are not the only example of designing for the average, but it is one that particularly affects my experience — causing me significant unnecessary anxiety.
To sum up this connection point, our constructed environments (including digital spaces like the internet) often exclude those with non-normative bodies, and this isn’t limited to disabled folks. Little people, fat people, dyslexic people, colorblind people, to name just a few of many. Perhaps sharing a bodyqueer identity can build more support for coalitions that advocate for truly universal designs.
Connection Point: Behavior Norms vs. Disability Gain
Related to norms about the ability to do things are norms about not doing things that seem weird or out-of-place. These embodied practices can arise from any number of causes, including physical, mental, emotional, spiritual, cultural, or other differences. Of course this includes typically neurodiverse actions, like stimming, compulsions, and avoiding eye contact, but I think the category is quite a bit broader than just neurodiverse folks, because behavior norms cover how we eat, work, dress, have sex, and many other aspects of our daily lives.
Although behavior norms are an important social tool for preventing harm, behavioral norms also bring some negative effects along with them. In high-stakes scenarios, powerful people prefer those who follow behavior norms. Many bodyqueer folks have a shared experience of being denied a job they are qualified for simply because they could not (or would not) present a certain way for the job interview. Another example is the police, who sometimes enact violence towards those who cannot follow orders in the right way.
This brings me to what is the only academic article to have made me cry while reading it. The article is “The Bodymind Problem and the Possibilities of Pain” by Margaret Price, and it tackles thorny problems like self-harm with both great insight and a deeply personal touch, both of which I hope to be able to emulate in my writing one day. But given limited space I’ll just quote the simplest example that requires the least context to set up, in a section devoted to exploring the concept of a “mental misfit”:
Consider the act of stimming, a repetitive behavior such as snapping a rubber band against one's wrist, or tapping one's fingers. Stimming in this way might be read by various observers as impolite fidgeting, a pathological need to self-soothe, or an expression of Autistic identity. This example, when considered in the context of audiences who observe the stimmer, illustrates the shape-shifting nature of the misfit. Stimming is a highly contingent phenomenon, contingent not upon a physical metric such as the height of a step, but on the affective response of those who observe and interpret it.
There’s several things one might notice from the example given. First, it is not the stimmer or the observer that causes the mis-fit but their relation, including the power dynamics of the relationship. Second, Price calls the misfit situation a shape-shifting one, due to all the contextual factors that play out in specific scenarios. Later in the essay Price elaborates on the shape-shifting nature of both disability and queerness — and its universalizing potential:
Theorizing crip as an endless stream of shifting and repeated performances of queerness/disability could easily lead to the trivializing question “Well, then, we're all queer or disabled, aren't we?” In response, McRuer elaborates to explain the ways that this question undermines, but also queerly supports, crip theory:
Recognizing that the question “aren't we all queer/disabled?” can be an attempt at containment and affirming that I resist that containment, I nonetheless argue that there are moments when we are all queer/disabled, and that those disabled/queer moments are desirable. (Emphasis in both McRuer’s original and Price’s quote)
I so clearly remember the first time I learned of the idea that “we’re all a little bit queer” from liberation theology. It immediately struck me as such a powerful, generative idea: “we’re all some shade of brown-skinned and come from Africa if you go back far enough” and “everyone has different abilities” and “no body is without abnormalities” and so on. But Price and McRuer are right to point out the way this can be used to trivialize or contain non-normative bodies. Just because we all have the experience of violating a norm, being in pain, being unable to do something, etc. does not mean that we have equivalent experiences — some bodyqueer experiences are qualitatively different from others in significant ways.
A pregnant person and a fat person might have some overlap in their experiences, but the fat person will likely experience negative moral judgment of their bodies, a longer duration of bodyqueer experience, reduced opportunity for romantic relationships, whereas a pregnant person might feel more sick, might experience body trauma from giving birth, might feel purposeful about their bodyqueer experience. The point is not that one is worse or better than the other, but that we must not use the label to wash out the significant differences.
Nevertheless, it is crucial to build bridges between people with different experiences, as this is the foundation for mutual understanding and respect. One bridge that can be built is the recognition that the bodyqueer experience is often a positive one, despite the negative effects of norms and, in rare cases, the body itself. The deaf and autistic communities in particular have done a fantastic job of framing their differences as valuable additions to the world, although their voices have not always been heard by society at large.
The deaf community has long argued that deafness is not a disability, but rather a different way of being. They have pointed out that deaf people have their own unique culture and language, and that they can be just as successful as hearing people in all areas of life. The community has promoted the idea of “deaf gain” which was later expanded to “disability gain.” This term’s introduction is reported in “Reframing: From Hearing Loss to Deaf Gain” by Drs. Bauman and Murray, translated from ASL:
The first mention of Deaf Gain was by an Englishman named Aaron Williamson. Williamson, a performance artist, gave a presentation to Dirksen Bauman's graduate class, Enforcing Normalcy: Deaf and Disability Studies in the spring of 2005, where he told of his experience of going deaf later in life. At the onset of his deafness, Williamson consulted many doctors, and they all told him the same thing: “You’re losing your hearing.” He wondered why it was that not a single doctor told him he was gaining his deafness.
The autistic community has also made great strides in destigmatizing autism. They have worked to educate the public about autism, and to challenge the idea that autistic people are somehow inferior to non-autistic people. Temple Grandin in particular has played an important role, by clearly relating her inner experience and how it allowed her to make significant scientific contributions that neurotypicals couldn’t.
By recognizing the positive aspects of bodyqueer experiences, we can help to create a more inclusive and accepting society. We can also learn from the experiences of bodyqueer people, and find ways to make our world more accessible and welcoming to everyone.
Connection Point: Health Norms vs. Crip Time
We get messages from a variety of sources about how vital it is to take good care of our bodies. Exercise is a common new year’s resolution. Religion preaches “Your body is a temple.” My workplace talks incessantly about “wellness.” In a way, these norms are a subset of behavior norms, because they reflect the assumption that if one just behaves in a certain way: i.e. takes good care of their body, they will stay healthy—a faulty assumption made by those who don’t want to face the fear that they might become unhealthy or disabled.
Like behavior norms, there are societal benefits to norms that encourage healthy behavior, but these norms have a dark side, especially when people mix up the concepts of unhealthy people and bodyqueer people. Fat people can be healthy. Bipolar people can be healthy. And the presence of pain does not always indicate illness or injury: pain can be a sign of healing, and pain can be sexy (when consensual).
The most serious proponents of health norms come from the medical establishment. The norms color doctors, nurses, and other personnel’s judgment strongly. And to the hammer of pathology, all bodily differences can look like nails. Combined, these factors result in the assumption among health personnel that bodyqueer folk cannot, will not, or otherwise fail to take care of their own bodies.
When fat people see a doctor, the doctor might perceive their fatness as overriding any legitimate concerns that a person might have. They are often told to lose weight even if that is unrelated to the problem that brought them to the doctor’s office. And even outside the doctor’s office they are judged for what is supposedly “their choices” when often genes and environmental factors have more of a role in body size. This experience of first being told your body is lacking, and then being held responsible for the deficit is not limited to fat people. I myself have encountered this attitude in some religious spaces—if I just had more faith, then God would “heal” me of my deafness, even if I never asked to be “healed” in the first place.
The key point of resistance I want to introduce is a concept called “crip time.” In an excellent essay titled “Six Ways of Looking at Crip Time,” Ellen Samuels outlined some of the ways crip time operated in her life, borrowing a definition from her friend Alison Kafer: “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” Although the whole essay is well worth reading (and not too long) I want to pull out one particular portion:
I tend to celebrate [the] idea of crip time, to relish its non-linear flexibility, to explore its power and its possibility. What would it mean for us also to do what queer scholar Heather Love calls “feeling backward”? For us to hold on to that celebration, that new way of being, and yet also allow ourselves to feel the pain of crip time, its melancholy, its brokenness?
For crip time is broken time. It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don't want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words.
I think it is this deep awareness of our bodyminds that offers connections between different types of bodyqueer experiences. This is because behavior norms shine an intense ray of light on our bodyminds — society scrutinizes our behavior and our bodies — therefore we must look deeply at our own bodyminds or risk a nasty surprise when coming up against norms.
Connection Point: Beauty Norms vs. Bodyqueer Pride
This section could just as well be called “desirability” or “attractiveness” norms. As before, beauty norms are intimately related (pun intended) to the norms listed above, for example ability norms. In a TED talk, Julie Andrieu recounted her experience on a dating app, saying that in 90% of her interactions she was asked if she was physically capable of having sex within the first five messages. Not only is this a rude question to ask of anyone, it betrays a narrow view of what sex is — rubbing a penis in a vagina to achieve orgasm — that is distressingly common. This is a strong connection between the bodyqueer community and the queer community, and together I hope we can promote a more holistic view of sex.
The most spatially sensitive people in the world, the ones with the best knowledge of their own bodies and desires, are those with physical disabilities. They make great sex partners. The most emotionally sensitive people in the world, the ones who know their own state of mind and can create a romantic and playful mood, are those with emotional instability. They make great sex partners. The most touch aware people are people who are fat and people with sensory differences. They make great sex partners. When we know what sex is really about — creating a space for physical intimacy — we are free to explore our own and any partners’ bodies without judgment or expectation, with true curiosity and desire.
Of course beauty and attraction are about more than just sex. There’s the subject of kids, leading to common questions like “Are you physically capable of having kids?” Or “Are your kids going to inherit your condition?” Or “Are you able to take care of kids once you have them?” While there may be a narrow place for discussing this between spouses in a respectful, thoughtful way, the questions are often asked publicly. This attitude extends to governments, in some US states it is legal to remove a kid from a disabled parent for no other reason than the disability itself.
Beauty and desirability extend beyond just ability. Those with vitiligo, severe burns, growths, excess fat, or other “ugly” body features can have experiences that are similar to those in a wheelchair, even though none of these in themselves are usually considered a disability. The word ugly is in quotes, not because “everyone is beautiful in their own way” but because it is not the body itself that is ugly, but the gaze that regards the body that way. Ugly people all share the bodyqueer experience of violating an attractiveness norm, which has impacts not just in dating and relationships but also in job applications, doctors visits, and in everyday interactions with strangers, stares obscured (or not obscured), awkward questions whispered (or not whispered).
To address this, bodyqueer folk have started down a related path as that trod by queer folk. Pride is such a powerful concept and strategy for counteracting these norms. I love the description of “disability desire” by Margaret Price:
Queerness and disability occur all the time, everywhere—in moments—for everyone. And desiring disability involves affirming the ways that disability blurs the boundaries between power and abjection. In such moments scarred skin is beauty; slurred speech is music; the tapping of a cane is power. The desire approach takes the older slogan “Piss on Pity” and flips the script of that pity onto the normate: "Don'tcha wish you could be disabled like me?”
I do not reject the turn to desire. In fact, in my everyday practice, I'm a frequent proponent of it. For example, I sometimes wear a “Neurodiversity Pride” button, which affirms both my queerness and my neuroatypicality with a rainbow infinity sign. I “Like” (in the Facebook sense) the recently launched campaign “This is What Disability Looks Like,” which shows disabled people in all sorts of modes, but especially in those that signal desirability (in a Western, neoliberal metric): shopping, traveling, sharing sunlit moments with family, striking sexy poses. When I dance among the dancing bodies at the Society for Disability Studies conference each year, I am conscious that the energy flowing around and through us is not just the energy of joy and pride (not to mention weariness, anger, and resistance) but is also distinctly erotic. These manifestations are critically needed in a world that has undesired disability both in terms of sexuality and in terms of our very existence.
There’s an untold number of ways that people celebrate bodyqueer pride. Take Nyle DiMarco, who unabashedly revels in his stereotypically sexy body, but also his uniquely deaf features, such as his expressive face. Or take Winnie Harlow who highlights their vitiligo rather than hiding it. Or take disability pride marches, plus-size burlesque shows, the paralympics, disabled comediennes, or any number of other ways that people show love for their bodies, not in spite of any queerness but including it.
Conclusion
To sum up, I love the way “bodyqueer” covers such a broad range of experiences and identities, and I hope it forms points of connection between the many groups that fit under its umbrella. It matches my experience better than the word “disabled” does, and it further describes my passive and active resistance to body norms.
A quick note of gratitude to early discussions and contributions to the ideas: Alyssa Massey and Denis Newman-Griffis, your input made this better, any errors are my own.
References
Andrew Solomon, “Foreword.” Deaf Gain: Raising the Stakes for Human Diversity. University of Minnesota Press, 2014.
Ellen Samuels, “Six Ways of Looking at Crip Time.” Disability Studies Quarterly, Vol. 37, Summer 2017. Accessed at: https://dsq-sds.org/index.php/dsq/article/view/5824/4684
Margaret Price, “The Bodymind Problem and the Possibilities of Pain.” Hypatia, Vol. 30, No. 1, SPECIAL ISSUE: New Conversations in Feminist Disability Studies, Winter 2015.
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