Disabled People, harassment, and Public Spaces

Mar 022017
 
A magnifying glass, for looking closer at what's right in front of us.

(Originally published on another blog in 2014. My writing voice has changed a lot since then, but I still agree with everything I said here! I have a lot more to say on disability and harassment, and am reposting this older piece here to get the conversation started.)

***

Every time I leave my house I may experience being seen as less-than, or incapable. I may be touched, poked or prodded, physically directed, spoken down to, stared at, pursued by people, all in the name of helpfulness and kindness.

Every time I leave my house, I may be touched without my permission, not a handshake of greeting or a tap on the shoulder, but an arm-grab, an arm around the shoulders, hands against my torso propelling me towards where it is thought I need to go, an uninvited hug. My body is used instead of words. I’m touched in these ways in the name of helping me.

All of this because I am visibly disabled, some of it because I’m a small woman.

Every time I leave my house, someone will get into my personal space when I want to be left alone—in places and at times when one would expect that I could be left alone—and yes, people do follow me. In most contexts, following a stranger is called stalking. When you’re disabled it’s called the follower being kind and concerned, or not knowing better.

—

When disabled folks get to talking about personal experiences, the discussion usually comes around to all the times people touch us without our permission.

We tell each other stories. There are frequent nods of recognition and rueful, sometimes amused, sometimes mirthless, laughter.

We’ve all been there.

***

Recently, a friend blogged about walking down a street, training her service dog, while a woman—a stranger to my friend–tracked her progress, following them in her car. One imagines that this woman must not have had anything important to do right then; one also knows how incredibly rude and creepy it is to stare at someone, and that it’s considered predatory to follow anyone without their expressed consent.

Another friend adjusts his work schedule (when he can) so as to not ride the bus at peak times, when there are likely to be more people engaging in what he calls “the grabby”–physically grabbing and directing him to an empty seat, or on or off the bus. Sometimes (not always) this grabby is accompanied by queries as to whether he needs help, but people rarely listen to his “no.”

What never seems to come up in these commiseration sessions about our experiences as disabled people in public spaces is exactly what to call what happens to us. For lack of a better term, I call it street harassment.

Unlike many forms of street harassment, what people with disabilities experience in public spaces is all but invisible, not because onlookers are accustomed to it, not because they want to pretend it’s not happening, but because most of the actions comprising this harassment are chalked up to kindness, ignorance, concern, helpfulness, or good intentions. Who wants to put down anyone’s good intentions?

How do I know it’s perceived this way? Because people make these excuses for their own and others’ behavior. Frankly, it’s tiring after a while to hear that someone getting into my personal space, or making assumptions about me, or handling my body or my mobility aid without asking is just trying to be kind, or doesn’t know any better, or thought they were being helpful.

As a human being living in North American culture, I have certain expectations of privacy and personal space. Most of us who grew up in this culture grow up expecting that we won’t be touched by random strangers, that there is a hierarchy of touching (where your new acquaintance on the bus doesn’t stroke your arm or put their hand on your back).

As a woman, I have an expectation that people will be conscious of gender in their interactions with me. I’m often startled by the way men touch me, many of whom, I would like to think, would think twice about touching women they don’t know in the ways they touch me. The touching is obvious, out there; there’d be no way to deny it if someone was trying to be sneaky and manipulative with their intrusions.

Perhaps part of the problem here, part of the disconnect, is that I am genderless in these people’s eyes. I’m disabled first, woman second. Indeed, for some, I’m disabled first, negating my womanhood and putting me somewhere in a nebulous space of being childlike but having a woman’s body and doing adult things (like going out and buying my own groceries).

it’s also tiring not having words to describe this experience, this sensation of always being on guard, for there’s no place, time, or way this might or might not happen. it just does…single women, married men, concerned citizens of all genders may think they know exactly where I want to go (without asking me, or if they ask, not waiting for an answer) or draw attention to me I don’t want or need, or blow a need or want I do have into far greater proportion than it needs to be.

Most of what I’m describing here isn’t explicitly violent, though physical and sexualized violence against people with disabilities does happen, in both private and public spaces, at alarming rates.

No, it’s not explicitly violent, but not being aware of it also paves the way, I think, for more violence. The more often something happens, the less likely people are to notice it.

Plus, it truly does unsettle me that disabled people’s space is invaded every day.; that this invasion leads to people feeling worn out, so demeaned, so reduced—and yes, so threatened by actions which onlookers see as considerate. It’s alarming that a disabled woman was surprised when her friend apologized for having to physically hustle her through an airport security line in response to TSA agents’ curtly given directions to hurry up (after all, that physical manipulation to follow the rules is seen as something that just has to be done, and we aren’t supposed to have feelings about it).

I’m sometimes alarmed by the strength of relief expressed by disabled people (including me) when a trip out in public is positive, with people talking to us like adults, respectfully assisting us only when asked and giving us loads of personal space.

We’re frequently objects of curiosity in public spaces. If it stopped at curiosity, we’d be doing fine, but that curiosity often translates into intrusiveness.

Please don’t leave disabled people’s realities out of reproductive justice history.

Feb 132017
 

(I first published this piece on another blog in April 2014 in response to an article on RH Reality Check – now called Rewire. It’s 2017 now. My writing voice is different. The way I analyze and critique issues is different.

Reproductive justice organizations are now making more of an effort to include disability and disabled people in their education and advocacy work.

…and I still stand behind everything I’ve said in this piece. Recent history is as important as long-ago history.

Advocates are doing better, but the kind of erasure I talk about here is still happening, which is why I’ve chosen to republish this essay.

****

If we don’t remember history, we’re doomed to repeat it. That’s probably one of the first cliches I learned.

Instead, We should probably be saying: If we don’t do our research, and talk to a good cross-section of people, our understanding of history will be skewed and incomplete—and nothing good can come from that.

Not so catchy, but much more real.

We’re still leaving people out when we write histories.

Even supposedly inclusive, progressive narratives are excluding people’s realities.

Even progressive, thoughtful writers are leaving out key pieces.

As a visibly disabled woman, I’m particularly conscious of how the histories and realities of disabled people are often left out of dialogues which include the histories and realities of other marginalized groups. This stings a little every time I see it, not because it’s specifically my reality being left out (as a North-American born white woman with economic advantages it often isn’t, but because the minority groups discussing these realities aren’t doing their research. They’re not practicing what I think of as true inclusiveness, not just making sure all the voices are at the table, but including the histories and realities of those whose voices aren’t at this particular table. Yes, it’s a fine line between including those histories and speaking for the people those histories discuss (and, yes, we want to avoid speaking for or over others) but so long as we use documented fact and anecdote, we’re practicing due diligence.

Can we include every single person’s reality? Of course not. Someone will always be left out. We’re too individual, have too much amazing, beautiful diversity, to expect that every one of us will always be represented.

Yet entire populations, populations with well-documented histories and realities if one knows where to look, are still being left out.

I’ve been noticing this particularly in the reproductive justice movement – it makes me especially sad to see it here – and it was glaringly obvious as I was reading this position on proposed changes to consent requirements around sterilization published at RH Reality Check.

I’m pleased that the groups who put this position paper together are reminding the public about this country’s long history of reproductive abuses against women, and urging reproductive justice advocates not to be so quick to dismiss safeguards against those abuses. But am disappointed that such an aware, well-cited mini-history leaves out the well-documented experiences of disabled people.

Disabled women were one of the primary targets of involuntary sterilization laws, which fell under the umbrella of eugenics, and became particularly prevalent starting in the 1920s, yet this article mentions disabled women only once.

Any quick Google search will pull up references to online and offline resources about the unconsented/involuntary sterilization of disabled people.

This is not> a hidden history.

This history of eugenics and this archive from the Chicago Tribune are but two publicly available online resources, available to any interested party with a computer and Internet connection.

I found those on the first page of my Google search.

I’m disappointed that the organizations who signed this position paper left out this key part of history.
I’m disappointed that they seem to be following the common trend of rendering invisible any reality that doesn’t specifically speak to the one they’re trying to bring attention to.

While this article nicely addresses the pros and cons of a thirty-day waiting period before sterilization procedures—we’re not nearly far enough away from the days when sterilizations were incorporated into other medical treatments without patient consent to do away with safeguards—I do wish that the mention of women with disabilities that does exist wasn’t so perfunctory and one-dimensional.

This is the only reference to women with disabilities in the entire piece:

What improvements to the Medicaid sterilization consent form would reflect the needs of women with disabilities, limited English proficiency, and low literacy levels, who want sterilization?

This feels an awful lot like being talked about, while rendering our collective history invisible. In other words, we don’t get to be part of the history-telling (and in so doing be empowered to speak our truth) but we can fit into a bullet list of policy-considerations.

Not only does this single mention in an article all about something that has routinely happened to us erase our reality, but it reinforces the assumption that the relationship women with disabilities have to sterilization is unilateral, and always in the direction of exploring sterilization options. This reinforces the idea that women with disabilities are not capable of the full range of reproductive decisions that other women—other people–are capable of, and that we don’t, in the course of our lives, find ourselves considering and making that same range of decisions.

I can tell you that this just isn’t true. Disabled people worry about getting pregnant, make decisions about whether to parent, have abortions, feel a range of feelings about those abortions, experience unwanted pregnancies and unplanned parenthood, think about how many children they want to have, wind up having fewer or more than they’d intended, and all the other health and life circumstances that fall under the rubric of reproductive rights or reproductive justice.

Looking at the list of organizations which put this position paper together, I noticed a distinct lack of organizations run by women with disabilities or devoted to disability research. I reached out to my favourite grassroots women with disabilities thinktank Gimp girl, to find out if any organizations were in fact addressing reproductive justice for disabled people.

They pointed me to these groups:

Center for Research on Women with Disabilities (CROWD)
and The Initiative for Women With Disabilities.

Both look excellent, and I’m happy to have them in my virtual rolodex of research.

They don’t appear to be doing any significant cross-issue work, such as with other reproductive justice organizations, though, and reproductive justice organizations don’t appear to be looking critically at the place of disability or disabled people either.

It’s not an easy thing to critique the work of prominent reproductive justice organizations, particularly when what they’re calling for is critical dialogue.

However, When we have a position article that references secondary sources, and which was clearly researched and constructed thoughtfully, the absence of information right there in the open, ready for the taking by anyone, is disappointing and frustrating. The reduction of disabled women’s reproductive realities—no matter how unintentional—to how and whether they can access consent forms for sterilization is, again likely unintentionally, harmful.

How do we, I wonder, integrate the voices of people with disabilities, and awareness of our collective history, into the general reproductive justice conversation? How do we break down the barriers that make reproductive justice activists afraid or unwilling to include disability and disabled people’s role in the movement?

“Corrective” Surgery On Intersex Children is Medical Violence

Jul 262015
 

These loving, affirming parents are suing the doctors who performed medically unnecessary surgery on their son before they met and adopted him. Their son was, like about one in two thousand children, born intersex. His doctors decided the baby should be a girl, and surgically altered his genitals to match this gender assignment.

“MC” is ten years old now, and has identified himself as a boy.

His parents trust him to know who he is.

They’re distressed that his body was surgically changed before he was old enough to say what he wanted, changed for no other reason than that it didn’t look like what people thought a girl’s, or a boy’s, body should look like. MC is confused and hurting now, and it didn’t have to be this way.

Every time I hear about the pain a child went through because someone with decision-making power decided their body wasn’t good enough, I want to find them all (the children, of course) and start a big cuddle pile. Then I remember they’ve been touched enough against their will, so I go cuddle a stuffed animal instead and share these stories as much and as far as I can.

***
Unnecessary surgery disables children. Surgery creates scarring. For intersex children, this often means chronic pain, loss of sensation, and even injury as their body grows, but is restricted by surgical scar tissue and muscle damage. These are all physical disabilities, usually with lasting symptoms, that wouldn’t have been there had the surgery not happened. Gender dysphoria, and the sense of bodily violation, can lead to emotional pain and mental health struggles like anxiety, depression, and thoughts of self-harm. Sometimes, the outcome is suicide, or chronic and disabling psychological struggles.

A word on unnecessary surgery in general: I’m not a medical practitioner, and most definitions of medical necessity out there revolve around what insurance will and won’t cover, so I’m defining medically necessary for my purposes, as any procedure needed to save a person’s life or significantly improve their functioning.

A child who’s urethra is blocked or otherwise doesn’t work to carry urine out of the body should have surgery if it will help. A child who’s urethra just doesn’t look the way other children’s urethras look, or is pointed in a way that won’t let the child stand up to pee like boys and men are “supposed” to, should not have surgery unless or until they’re old enough to decide what they want.

No one should decide that purely cosmetic surgery should be performed on someone else’s body.

Surgery is stressful. Surgery is traumatic.

Not understanding what’s happening to your body is terrifying, and that fear doesn’t leave once the bad time is over.

It doesn’t matter whether a child can consciously remember the surgery. It, like abuse, leaves its imprint on the body and psyche.

This isn’t just rhetoric here; I know what I’m talking about.

Between my birth and shortly after my fifteenth birthday, I went through over 20 surgeries. Most of them were on my head and face. None of them were on my genitals. I remember few of them. All of those surgeries were necessary to my survival and my functioning, but I also know the toll they’ve left on my mind and body. There are only so many times you can take a body apart and put it back together again before it just doesn’t feel right or function cohesively.

To leave that toll just because a child’s body doesn’t conform to arbitrary gender or attractiveness standards is violence.

Adults are free to get whatever cosmetic or medical surgeries that aren’t strictly necessary they want. Yes, we could fault beauty norms for pushing some adults into thinking that they have to have surgery to improve themselves, but ultimately most adults are legally and ethically free to make their own choices.

Children aren’t given those choices. Babies and very little children aren’t able to make such choices. Children’s bodies are growing and changing—should not be interfered with unless interference is needed for survival and healthy growth. If it’s possible to facilitate a child being able to breathe, talk, walk, and otherwise move their body without inflicting lasting harm, then certainly that can and should be done.

We must not take the bodies of little children apart just to put them back together the way we think they should go.

***

The validation for surgery on intersex babies came from a psychologist named John Money.
This was the result of his experiment with which doctors have justified operating on intersex children.

One of the medical establishment’s goals is to prevent disability and illness. The Hippocratic Oath commits healthcare providers to never do harm.* How then can medicine, as a whole, ethically justify procedures that can cause physical or psychological disability.

We should not be disabling children. The fact that the justification for disabling children in this way came from an experiment that harmed a child–a human being–so greatly is horrifying.

Some people suggest genital-normalizing surgery can protect children from being bullied. People – children and adults – will always, always find something to bully someone else about. That’s not going to change. Submitting a child to surgery with unknowable results isn’t going to change social structures or the bullying problem. (I was going to say that surgery wouldn’t change human nature—which is also true—but I believe that the pervasiveness and escalation of bullying have much more to do with social structures than human nature.

I’d argue too that every child deserves privacy, including privacy from other children, so that if they don’t want to, or don’t feel safe with, showing their bodies to their peers, they don’t have to. It’s ridiculous, actually, that on one hand adults preach to children about modesty while on the other hand children are not given the chance to practice any form of modesty if they wish too.

I should clarify here that I don’t think there’s anything bad or immodest about bodies, or about being naked around other people in places where that makes sense—like locker rooms. What I take issue with is the contradictory messaging children are given around privacy, and the lack of options for children to make decisions around their own bodies. It’s shameful how little bodily autonomy children are allowed.

The tendency to bully around difference is a massive topic that can, and has filled books. People will always find difference, even if it’s not staring them in the face.

So, if we don’t do genital surgery on intersex children, what do we do about assigning gender? I don’t know. I’d like to think that we could just raise children in a non-gendered, or maybe a multi-gendered, way until, or if, they choose a gender for themselves. Most Western and westernized cultures are so dependent on the gender binary, for everything from naming children to assigning them to sports teams and other recreational activities, that my wee brain just can’t quite envision how these cultures could move past this tendency to raise children without actions that lock their existence into a gender binary. I wish I had that kind of expansive imagination, and even more that if I had that imagination it could make real cultural change.**

The only thing I know for certain is that hurting children is bad, and that having a medical degree and seeing genitals that don’t fit what your textbooks tell you is normal is not a free pass for causing hurt.

*For a modern version of the Hippocratic Oath, take a look here.

** Someone did have that kind of expansive imagination.

Further Reading

As Nature Made Him: The Boy Who Was Raised as a Girl

Relationship Violence Awareness: People With Disabilities

Jul 232015
 

What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?

Even though people with disabilities are statistically more likely to experience relationship violence than nondisabled people there’s virtually nothing about what disabled people experience included in anti-domestic violence education, fundraising and awareness campaigns, or other forms of activism. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)

It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.

When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or whose mental illness sometimes affects how they experience the world around them, the incidence of violence against people with disabilities becomes even more invisible.

I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities.

As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence. The lack of research and activism with these groups means services can be rare or unhelpful.
The women in this study identified abuse as the most significant health risk they faced.

We can’t ignore that!

Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people.

Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that the patient always needs their caregiver with them.

It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

Most people can communicate in some way, and most people can find a way to respond to these questions, which just ask for a yes or no answer – response options could include head gestures, hand gestures, eye blinks, words on a communication board or an electronic communication application (such as on a smart phone or tablet), sign language, or talking.

It’s appropriate, and necessary, for a healthcare provider to conduct at least part of a patient’s appointment with no family members or other caregivers in the room, unless the adult patient makes it known that they want someone to stay. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip:

If a romantic or intimate partner (or anyone, really, other than the patient) says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)

Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability, so be less likely to investigate their cause. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.

Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)

Another key factor that came up in the study I mentioned above was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be broken down into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can and should be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.

The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.

Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.

Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners regardless of anyone’s abilities, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.

Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.

Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.

We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)

We’d also have a system in place for people of all abilities, because right now, people with disabilities don’t have equal access to the system we have for intimate partner violence victims/survivors.

Very few organizations work specifically with disabled people who have experienced abuse. These two are exceptions.

We need fewer exceptions. We need agencies to stop working on a scarcity model that makes being inclusive of and accessible to disabled people seem like too much work – like something they just can’t do with the limited financial and human resources they have. We need online and offline awareness campaigns to include the voices and experiences of people with disabilities, not as unique additions to the anti-abuse message, but as full and equal participants in sharing stories and support, and finding solutions.

Disability and Beauty Standards

Jun 252015
 

Cara Liebowitz of That Crazy Crippled Chick has some powerful things to say about beauty standards, expectations, and what many disabled bodies really looke like.

IN her latest blog post, On Being “Ugly Disabled”, Cara tackles the idea that some disabled bodies are seen as acceptable, even beautiful (physical disability as a fetish is a whole other discussion point), while others are seen as ugly.

She starts out with her trademark honesty:

“I am not one of the “pretty disabled”. I may have been close to it, once, but as I’ve gotten older and my disabilities have changed and multiplied, I have quickly moved away from any hope of “passing” as either non disabled or “prettily”, “acceptably” disabled.”

Cara challenges everything we think we know about what it means to look professional, to look like a woman, to look like other people’s ideas of what disability should look like. She challenges the idea that disabled women are only beautiful if we’re delicate, elegant in the way we move, pretty, and quiet.

She also challenges the idea that disabled people need to spend valuable energy looking “normal”: “I do not sit up straight and my posture becomes worse when I am tired or excited, which can lead to me sliding out of my seat or propping myself up with my arm to keep from falling completely over to the left (my weaker side).” (I’d hope no one should suggest that Cara should always keep from getting excited so that she can sit up “properly”.)

You can read the rest of Cara’s excellent post here.

For more of Cara’s bold, direct thoughts on disabilities and beauty standards, check out her essay Palsy Skinny: A Mixed-Up, Muddled Journey into
Size and Disability in Criptiques.

Sexuality. Disability. Not so different after all.

Jun 162015
 

Talking about sexuality and disability is a big deal. Until recently, most of what we saw in mainstream media were reports of disabled people being abused and assaulted, or syrupy-sweet feel-good stories about a person with a disability in a romantic relationship which (gasp!) included sex.

Sex, and disability, as experiences, are assumed to be entirely different – with the thinking that one involves only pain; the other, involves only pleasure.
As social concerns and lived experiences, disability and sexuality don’t seem, at first glance, to have much in common either.

Disability is tangible – in our faces; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers that need to be broken down. Sexuality – just is – except that it’s not. Sexuality is an individual concern—except that it’s not. Sexuality is filled with pain, confusion, lack of access and education, and endless potential just as surely as disability is filled with struggle, misunderstanding, lack of access, and sheer humanity.

We can’t continue to ignore connections between the experience of disability and the experience of sexuality. we can’t do this because sexual pleasure isn’t just about individual bodies’ enjoyment (people’s sexualities are so much bigger than the physical and emotional experience of sex), and disability rights isn’t just about breaking down barriers and gaining legal equality (it’s about individual lives and collective experiences).

In talking about sexual pleasure, we (or at least I) make a pretty natural leap to questions of sexual health, relationships, intimacy, safety and recovery from sexualized violence, and access to help with all of these. In talking about disability and access we need to include access and inclusion in recreation and social opportunities, as well as employment, education, and living conditions. To break that down, we who are disabled need to be able to access fun things—including fun sexy things. Not considering social opportunities as important means, ultimately, not considering disabled people as full and complete humans beings.
Continuing down this road of thought, I begin to realize how similar sexualities and disabilities, as topics of conversation, are to one another.

Consider how mention of both sex, and disability, in casual conversation generally make people feel—scared, nervous, eager to change the subject, full of questions they don’t feel like they’re supposed to ask or don’t know who to ask.

Consider the struggle people talking about sex or disability often have with language. Which terms do we use? Will we offend someone if we use this term over that one? What do all those terms mean anyway?

Consider the way we talk about both sex and disability– in hushed voices, in euphemisms, in quick side conversations.

As for talking about people with disabilities who have sex, or how sex is affected by disability? —Well, we really just don’t talk about that.

When we do, we (at least according to mainstream media) frame an intimate relationship involving a disabled person as miraculous or inspirational, or we expect the lives of disabled people to not include any sexual experience or desire.

Come to think of it: Isn’t this how we represent sex in our culture too—as something out-there and in our faces, or something we need to repress or hide at all costs, with nothing in between.

Whenever we do acknowledge sexualities, whether the actors or objects of those sexualities are visibly disabled or not, the representations rarely convey pleasure. Sexual pleasure is something we, as a culture, haven’t paid attention to, and in that silence is the assumption that pleasure will just “happen” by itself. The reality is that it often doesn’t happen because of, among other things, lack of education and fear many have around their own bodies. If you’ve learned that exploring your own body is a bad thing, or you don’t have the words to tell your sexual partner what you like, or don’t have access to sexual healthcare to help with pain or illness that interferes with your sex life, pleasure could be hard to come by.

Interestingly, meeting the access and inclusion needs of disabled people is also something that’s just thought to “happen.” Someone else will take care of it. Surely, one step into a building isn’t a big deal? It’s okay if that Web site isn’t accessible; someone can help you sign that form or do your shopping, right?

These kinds of assumptions limit people—real live people, not theories.

Sex and disability both get talked about as if they’re medical issues, only to be addressed by highly educated experts. There’s this strange thing many of us who talk about sex professionally encounter, which is the question of what medical or therapeutic credentials we have. Most medical professionals receive little to no training in the areas of sexuality and relationships; seventy-five percent of American medical students surveyed reported receiving less than 5 hours of formal training in sex and sexuality. Most medical and therapeutic professionals, including psychotherapists, only get anything greater than basic training (which I’d still argue is what is needed to cover all of the basics) if they actively seek it out.

People with disabilities often find that medical and therapeutic folks are assumed to be the ones who have the most knowledge about our bodies and minds; they’re the ones who tell us what we are and aren’t able to do (how does this jive with the finding that more than half of American medical school Deans report that their students aren’t adequately trained in disability or in working with disabled people?) Whether it’s through unsolicited assistance from a stranger on the street, or an officious pronouncement from a medical professional, disabled people are often not seen as being in charge of our own lives, and as the best experts on those lives.

Many people don’t get the education they need to make sound choices about negotiating sexual relationships and taking care of their sexual selves. Many disabled people don’t get the tools (often practical tools like technology, mobility aids, and accessible housing or workplaces) to live life fully and safely.

What I think we end up with, with both sexuality and disability, are realities that affect both individuals and communities. Not talking about these realities turn everyday experiences of sexuality, disability, or both, into the problems – sexual assault, unwanted pregnancy, sexually transmitted infections, abuse and neglect of disabled people, severe isolation among people with disabilities, to name a few – they’re already assumed to be.

What do we do? We talk, and talk, and talk some more.

We treat everyone like human beings. We avoid running in fear from mention of sexuality and from disabled people. We avoid shame around sexualities and belittling (which often looks like shaming) of disabled people

We look at the cool things talking about sexuality and disability do for our understanding of both.

Disability impacts sex, sex impacts disability, and the reality that people with disabilities can and do have a sexuality and have sex (and enjoy it) tends to be forgotten.

How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have an awareness of themselves and what we need and want that other folks just don’t have, or, and please forgive me for circular logic, self-awareness other folks just aren’t aware they have. Apply that to sex, and to life in general, and some pretty amazing things can happen – like more sexual pleasure, fewer unhappy relationships, more confident people (sexually and in general).

Having a disability can also result in people needing to do sex and express their sexualities differently, hence breaking the mold of the popular idea of how sex “should” be done—something that can only make life freer, and more fun, for everyone.