The Erasure of Sexuality in the Health Care System

Aug 252016
 

When was the last time you felt comfortable asking about your sexual health, or mentioning your sexual relationship, at the doctor’s office?

Sexuality is always a potential part of healthcare – we don’t usually leave our feelings, our relationships, our reproductive choices or experiences, and all the other pieces that can be part of our sexualities at home when we go for a doctor’s appointment, or wind up in the hospital, or talk to a social worker, or spend the day at the lab getting poked with needles or having pictures taken of our innards. Unless they specifically provide sexual healthcare, most of these people and places don’t include our sexualities in our healthcare discussions or plans. This isn’t going to work longterm for most of us; Most people identify themselves as being sexual or having a sexuality, and most of us are going to need to see the doctor or have medical tests at some point in our lives.

Last month I wrote about all the fantastic stuff I learned at the session on sex, sexuality, and relationships for neurodiverse folks at the Guelph Sexuality Conference.

Today our topic is Health Care’s Erasure of Sexual Pleasure.

Natalie Rose and Sophie Delancey, the workshop presenters, focussed on the experience of people with chronic illness or disability, but they pointed out that people receiving routine or preventive healthcare are just as much a part of the system, and just as much in need of improved care around their sexualities. They were also quick to point out that criticizing the failure of healthcare to address sexuality isn’t an indictment of individual providers; it’s a criticism of the system that trains providers and sets policies.

This workshop was packed! They had to bring in more chairs. People want to learn this stuff.

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Natalie Roseand Sophie Delancey make a dynamic duo for presenting on sex and disability. Natalie was trained as an occupational therapist and has a spouse with physical disabilities; Sophie has worked in sexuality-related jobs since graduating from university and has recently become disabled. They’re also both super-vibrant and enthusiastic. They know their topic, and they love it.

One thing I really appreciated was that they both shared personal experiences and observations. Sophie’s role wasn’t just to be the disabled person telling her story and Natalie’s role wasn’t just as the rehab professional telling us about the research (or, in this case, the lack of research).

For example: At one point Sophie was telling a story about her time in the hospital after her strokes, about not being able to get the right words from her brain to her mouth to communicate that she felt crowded by having so many people around her while she was using a bedpan. Sophie pointed out that policies should address patient privacy, especially because many patients can’t speak, or can’t find the right words, or feel too stressed or intimidated to speak. She talked about how the rush-rush-rush of being cared for in a hospital or rehabilitation centre can feel invasive, and that it can feel dehumanizing, even with the best intentions, to not have the privacy around the most intimate parts of our lives (everything from using the toilet to sneaking a smooch with a partner) that most of us take for granted.

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Telling stories about our lives and experiences is crucial to developing empathy, to highlighting diverse experiences, to making sure people know they’re not alone. But if we don’t center that in something bigger – and that something doesn’t have to be a footnoted, bibliography’d academic paper – we’ll all be sitting their telling our stories without gaining insight, building tools, or developing the power to make transformative change. The people we really want to reach – the policy makers, healthcare providers, social service workers, support workers – are going to walk away and go back to doing their jobs if we continue to simply tell stories without making targetted, applicable recommendations for change.

I’d like to just dismantle the system, but we usually can’t do that, so we need to give folks the tools to make their systems better – to do their jobs better. Like I said, the room was packed during this workshop, and I’d like to think that healthcare providers left with approaches to make their practices more inclusive of sexuality, more accepting of disability, even if they can’t directly impact the policies that se patients and clients as little more than the specific health problem or life crisis they come in with.

Making sex okay to talk about.

Our medical system is based on facts, biological happenings that can be observed and explained. For example: Unless healthcare providers find a reason for a patient’s pain, that pain is often dismissed or belittled. Patients’ Reports of pain often aren’t included, or described in detail, on medical charts. if a physical reason for the pain isn’t found, it’s assume to not exist, an the impact of the experience of pain on personal identity, relationships, daily activities isn’t explored or addressed.

Biologically provable facts are just a part of how most of us experience sexuality. Healthcare providers who want facts don’t know what to do with identities, experiences, feelings – and they’re not trained to know what to do with any of that. They’ll look for research on sex, and, mostly, find statistics on birth control methods, sexually transmitted infection risk, and sexual abuse prevention. These are absolutely important, but, noep, not the whole picture by a longshot. Another part of the picture? Most Medical students aren’t getting the training they know they need to be able to address patients’ sexual concerns.

When people don’t get this training, when there isn’t solid research, people tend to substitute their own opinions, especially around things as loaded as sexuality is for most of us. Or, they just avoid the topic as much as they can.

It’s hard for patients to get their needs met in a fast-paced, overworked, undervalued healthcare system as it is. If that need has anything to do with sexuality, most people are going to feel super-inhibited. Sophie’s biosays she had worked in the adult industry for five years before her strokes. With all that experience talking about sex, she still felt intimidated at the idea of mentioning her concerns about her sexual function to her healthcare providers. She didn’t want to alienate people who were addressing all the other needs she had after a sudden and life-threatening medical crisis. She didn’t know the parameters for what was okay to talk about. If no one mentioned sex and sexuality, she sure wasn’t going to rock the boat by mentioning it herself.

When providers don’t ask about sex and sexuality, the message is sent that it’s not an important part of health and healthcare.

patients don’t know if they’re allowed to talk about sex;
providers are often the people in power, even if they don’t see themselves that way, and it’s ultimately going to be up to them to open the conversation.

Not that that’s necessarily going to mean (or that we want it to mean) your primary care doctor saying: “So, how about that sex life.”

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Some providers don’t like to bring up sex and sexuality first because they think doing so would conflict with their client-centered approach – therapy or treatment is client-directed, so if clients don’t bring up sex (or any other topic), the provider doesn’t ask.

Culturally, we have really strong taboos against mentioning sexual things in nonromantic settings – and even in romantic settings lots of people have trouble expressing themselves around sexuality, but that’s a story for another day – and many people have experienced doctors or other providers shutting down questions about sexual fears or problems. We’re at a point where healthcare providers are going to have to step up and be key players in changing the conversation.

Some of the ways Sophie and Natalie suggested showing that sex and sexuality are acceptable topics:

  • ON intake forms, include questions about sexuality, including whether the patient has any sexual concerns they’d like to discuss. If you think about it, we’re asked about all kinds of socially uncomfortable topics on forms and at appointments – poop, food choices, weight, menstrual cycles, you name it. We’re always allowed to not answer if the question makes us feel too vulnerable.
  • In intake and discharge processes: Include resources for sex and sexuality information, especially information related to disability or illness, in any packets of material provided to the patient. I need to add here that this packet should always be provided in a format the patient can read (This doesn’t usually happen; printed paper is the default. At the very least, someone from the medical ofice or facility needs to go through the packet with the patient so that they know exactly what’s in there.
  • When making a treatment plan. Occupational and physiotherapists, especially, work with patients to decide on the goals and direction for the treatment plan. They can include sexual or romantic activities in the examples they give to help their clients develop that list of goals. And no, I’m not suggesting that the therapy should involve sexual activity. There are plenty of non-sexual ways to meet physical goals for sexual and romantic activities. For example: Natalie mentioned that getting into and out of, and figuring out supports for the reclining bound angle yoga pose as a great nonsexual way to experiment with sexual intercourse positions where the person receiving would be lying on their back.
  • At the office, hospital, or rehabilitation (or log-term care) facility: Make this a sexually inclusive environment. Include sexual healthcare and relationship health pamphlets or posters available in the waiting area, and in exam and consultation rooms.
  • And, I really liked this one for providers: Wear a button saying something like “You can talk to me about sex.” As a silent reminder that sex and sexuality are accepted in that space. I should add: If the client or patient can’t read, or can’t see, they should be told about this, in the same sort of calm, “Oh by the way” tone you’d use to tell someone there’s bottled water available if they’d like some.
  • To all providers: If you don’t have sex an sexuality training, you can still talk to your patients about it. You can listen (that’s therapeutic in itself) and know who to refer them to.

There’s so much fear that goes into being sick, especially if it’s a sudden helth crisis, that, in my book, anything that will help patients feel better, feel more in control of their lives, have more pleasure, is a good thing.

Natalie told us about one woman she heard about, who, one year after her stroke went to her doctor for a follow-up, and asked when she was allowed to have sex again. He was, apparently, surprised, and told her she could have had sex any time that previous year. There that woman was, afraid that the sex she wanted would hurt her, and too afraid or shy to ask sooner.

Not that lack of sex ever injured or killed anyone, but all pleasure is precious, and no one should have to worry needlessly like that.

Sexual Health And Disability: Are we afraid to talk about it?

Feb 162016
 

There’s something we’re not talking about.

There’s something the news articles and personal essays, the films and poetry, the sexy photo spreads and opinion pieces about sex and disability are leaving out – safer sex and sexual health.

To be fair, most mainstream discussions of sex and sexuality aren’t talking about sexual health either, at least not in ways that encourage people to take care of theirs.

Safer sex has a rep for being boring and unsexy. Getting regular sexual healthcare is billed as embarrassing, and, what’s more, unnecessary unless we’re a certain kind of person, or doing a certain kind of sexual activity, or have had X number of partners.

Newsflash: Getting sexual healthcare, and practicing safer sex, saves lives and protects health, which isn’t boring. At least, I don’t think so.

Maybe we folks with disabilities haven’t been talking about safer sex because we’ve been busy convincing people of the obvious, that disability isn’t unsexy and that many disabled people do have, or want, sex. Maybe folks haven’t been talking about how they protect their sexual health because they’ve bought into the myth that stopping to put on a condom or dental dam (whether in real life or on the page) ruins the mood Maybe folks haven’t been talking about safer sex because they know talking about sexual health makes us all feel a little scared and vulnerable, and we know that disability makes nondisabled people feel scared and vulnerable.

I’m not sure why we’re not educating and telling stories about sexual health, but we need to start, for our own well-being if for nothing else.

People with disabilities who are or want to be sexual with others need access to sexual healthcare, access that sometimes just isn’t there. We also need to make information about safer sex practices part of the collective wisdom of disabled people. Just like disabled folks turn to each other to share strategies on getting our employment, travel, or technology-based access needs met, folks need to be able to draw on that collective wisdom for information on things like how to put a condom on when you can only use one hand, or how to get help filling out forms at a clinic without telling your sexual history to the whole world, or how to get a pelvic exam when your legs keep going into spasm – information you won’t find in any sexual health guide I know of.

Sexual health is a big deal. Remember that thing about saving lives and supporting health? Yes, that one. And that goes for supporting health whatever our baseline health status happens to be.

Preventing or treating STIs (sexually transmitted infections) is important for everyone, and important for public health as a whole, but I think it’s fair to say that STI prevention can be especially important for chronically ill or disabled folks whose baseline health and functioning can be compromised by something as basic as the common cold, or for someone who relies on others for assistance with personal care and health maintenance.

People, no matter what their disability status, are often so scared of STIs that they just ignore safer sex, or only practice it sometimes, or only for certain activities.

But there’s no shame in supporting our own health, and there’s no shame in being ill, either.

As my friend and colleague Ducky DooLittle says: “Good, nice, clean, sweet people get STIs every single day.”

If you want a quick run-down on safer sex in general, I suggest:

To start the conversation on safer sex and disability, I’m sharing this article I wrote for SaferSex.Education.

Disabled People need sexual healthcare too

Most safer sex guides take it for granted that all of us are going to have the manual dexterity (ability to move our hands) to unwrap and use a condom, that getting STI testing is as easy as booking (and keeping) an appointment at a free or low-cost sexual health clinic, and that communicating with a partner about safer sex is as easy as having a few face-to-face conversations about it. For those of us who have any sort of physical, cognitive, or psychological disability, these and other “basic” safer sex strategies may not be so easy.

It doesn’t help that disabled people are assumed to be nonsexual, or to have more important things to worry about than the “luxury” of sexual feelings or a sexual relationship, or any number of other myths about sex and disability all of which miss the mark in one way or another.

People with disabilities who are sexually active, or planning to be sexually active, need to practice safer sex, and get regular sexual healthcare, just like anyone else.

A Quick Overview of Safer Sex

If you’re disabled, know that you have the right to whatever expression of your sexuality you want to have, and you have the right to be safe when expressing your sexual self, both alone and with partners.

Safer sex is about taking care of your sexual health, and protecting yourself from sexually transmitted infections (STIs). Preventing unwanted pregnancy is known as birth control, not safer sex, but it’s still part of your sexual healthcare if pregnancy is something that can happen to you or someone you’re sexually involved with.

Safer sex includes using barriers (such as condoms or dental dams) for genital contact with a partner, and getting regular sexual healthcare, including STI testing.

Sexual Health Care

Most sexual health services aren’t set up to meet the needs of disabled people. In the U.S., many providers don’t get training in working with patients who have disabilities. Coupled with assumptions about disability and sex, this can lead to you not getting the sexual healthcare you need. That might be a healthcare provider who doesn’t ask you about sex, or asks in such a way that assumes you’re not having it.

Or, it means examination tables that don’t accommodate people whose bodies don’t move in the ways expected for traditional exams. This includes staff unable, unwilling, or untrained to assist with positioning your body on the table.

Or, it means reams of forms to fill out, and informational pamphlets and brochures that are only available in print.

Even one step into a building- or doorways that are too narrow- can keep you from seeing a healthcare provider of your choosing.

read the rest of this article for some disability-aware tips on getting your sexual healthcare needs met.

Sexuality Attitudes, Disability Myths, and Shopping For Sex Toys

Feb 052016
 

Of the five sex toy stores I’ve personally visited over the past 15 years, only one had a flat entrance.

Of those five, only three had employees who didn’t respond to me as a visibly disabled person with obvious anxiety, and, in one case, hostility.

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Sex toys – It’s one of the first things people think about when they think sex and disability – if, of course, they’ve managed to get past the “OMG disabled people? Sex? I think I have the vapours!”

For people who follow online media, anyway, the idea of people with disabbilities being sexual creatures is getting more familiar, and sex toys tend to feature in those narratives.

For example:

There’s a great reason for this. Toys can make sex play more physically pleasurable for people who have spinal cord injuries or other reasons for genital nerve damage. Or, they can help a person who has chronic pain, or limited mobility (or both) reach their butt. Or, they can help partners do the sexual thinggs they desire but that their bodies won’t allow. Or…the list has no end.

How do folks with disabilities get their hands on sex toys in the first place? Generally, the way anyone else does: stores, online, or cobbling something together from the kitchen drawer or bathroom cabinet. ON the surface, it’s easy-peasy. Another But, a lot of stores still aren’t physically accessible to folks with mobility impairments, with steps at the entrance or inside, no automatic doors, narrow aisles, and more. Some stores don’t keep sample versions of each product on the shelf for people to handle. At the stores where they do have all sample products out for customers, you can literally glance at, or hold, or sniff dozens of dildos (or anything else you’re looking at) to get an up-close-and-personal sense for which one is most likely to work for you.

As with anything, you’ll really need to try the thing before you know for sure if you’ll like it, and you’re not allowed to do that until you pay up!

Having this large display of products right there can improve everyone’s shopping experience, but it’s virtually vital for folks who can’t see to get a sense of the depth and breadth (no puns intended here) of what’s out there. It’s also pretty crucial for folks who need to be able to tell if their hands, let alone any other body parts, can use the toys.

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Shopping at sex toy stores is unlike most other shopping experiences.

It’s fun. It’s sexy. It can be scary as hell or as normal as going to the drugstore to buy toothpaste. A trip to a sex toy store, for some, is the ultimate “OMG that changed my life” experience,; for others it can be a “Bletch! never again!” story their best friends tease them about forever.

But shopping for anything can be a big deal for people with disabilities – whether it’s being able to get to the store (or use the store’s Web site without cursing technology and punching the computer), or physically accessing all aisles and shelves, or receiving customer service that’s respectful and helpful, receiving customer service at all (I.E. not being passed over in favour of the person in line behind you), or even being able, with a significantly lower likelihood of being employed and having disposable income, to afford what’s being offered.

The rest of this post will look at how beliefs about and attitudes towards disability can make or break a shopping experience, and why that’s even more of a big deal when we’re talking sex toy shopping.
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My own first sex toy shopping experience went something like this:

Me: “I’m looking for a G-spot vibrator.”

Shop Owner: Opens clear plastic box and places toy in my hands. “here’s one. It’s only $34.99. Here’s the button to turn it on. How are you going to be able to put the batteries in?”

Me: Touching the slender hard-plastic cyllinder with a curved end that looked better for fishing (minus the sharp edges) than for rubbing delicate tissue: “Does this actually feel good?” (What I wanted to say: It feels too hard.)

Store-Owner: “Here, let me show you how to put the batteries in. You unscrew this part–”

Me: “I’m not sure it’ll feel…?” (Silently: “Yes, I think I can figure out how to put the batteries in. Not really worried about that right now.”)

Store-owner: “Oh. You just have to experiment and find what feels good for your body.”

Me:”Umm, sure. I’ll guess I’ll try it… That’s all you have for G-spotting?”

store-Owner: “This one will be the easiest for you to put the batteries in.”

Me: “Okay, I guess I’ll try it.”

A minute later I’d payed my money and left, plastic bag full of toy in hand.

Was this just one of those store-owners who wasn’t interested in spending time with customers?

No. When we weren’t talking about batteries, she mentioned that she’d just spent an hour helping a guy pick out a toy for his wife. I’m guessing the guy didn’t have a physical disability. He sure didn’t use a wheelchair; that was one of the stores with steps.

My experience hardly counts as discrimination, but there’s a reason it’s stuck with me.

I walked into that store expecting to be treated like a customer, shown options, given space and time and information to make my decision. I wouldn’t particularly have minded being shown how the battery compartment worked, but in a more “oh, by the way” manner as part of giving me information about the toy. The store-owner expected that I was a blind person. Whatever a blind person meant to her, it wasn’t someone who comes to buy toys.

My needs as a sex toy customer weren’t any different from any other customer’s needs. The store-owner needed me to not be different from any of the other people she expected to walk into her store and buy stuff so she could pay her bills.

My needs were to have a sex toy shop employee or owner stay calm and professional at a time when, no matter how enlightened I was about sex toys, I needed their help and was feeling nervous, anxious, and like I wasn’t quite supposed to be doing what I was doing or spending my money on “frivolous” things. The store-owner’s needs were – well – to deal with this anxiety-producing situation of being faced with a blind customer as quickly as possible.

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I’ve learned from friends and acquaintances who’ve run or worked in sex toy stores that how to support customers is a big part of their work. They want customers to feel welcome, but not crowded, supported, but not intruded on, cared for, but not too much.

They know that people who come into their store could be having any number of sexual insecurities, relationship problems, body image issues, and more. They know that sometimes their potential customers come in looking for answers without even knowing what the questions are.

Your standard retail experience, where you usually expect that a salesperson will greet you, cheerily ask if you need help, and check in with you every 4 minutes, might feel downright terrifying to some folks trying to buy a sex toy, or porn, or a bondage kit, or a bottle of lube. Most of us have been taught to feel such shame around sex in general, and especially our own sexualities, that too much input or friendly chit-chat could feel really invasive or scary. (Note: This doesn’t apply to everyone. For some people, that kind of friendly connection puts them at ease, but they need to be the ones who initiate it.)

but, for a blind person, who may or will need help – depending on how much usable vision they have, E.G. Can they read lube bottles, see the pictures on DvD covers, or see where the rainbow-coloured dildos are kept? – how does a sex toy salesperson maintain as much physical or emotional distance as the customer wants while still giving practical help finding items and reading packaging? Or, what if a person in a wheelchair wants to look at a dildo they can’t reach? Asking a sales associate to reach it and hand it to them isn’t necessarily an invitation to talk.

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I think what makes customers with disabilities’ experiences in sex toy shops unique is that many sex toy store customers, regardless of ability, bring their own nervousness, fear, anger, or whatever to their shopping experience. Let’s face it — sex and sexuality carry huge emotions attached to them. Most of us have internalized shame around sex and sexuality in one way or another.

Going into a toy shop, especially in a small town, especially if you look different or distinctive, can carry a whole lot of emotions and fearful thoughts with it.

So, the average toy shop customer could be walking through the store with any one of these emotions, or all of them and more all at once! They’re counting on people working their not to judge them.

Disabled customers, in addition to potentially coming in with this emotional bagage, will also often be carrying around the anxiety of “How will I get treated by these strangers, today?” and for some “Will I even be able to get into the store?” That’s a lot of inner chatter and anxiety to be carrying around all the time.

Based on what we know about general attitudes around and knowledge about disability, it’s pretty reasonable to say that When a visibly disabled customer enters a store, some people working their are going to have big, complicated emotions of their own come up. People have huge fears and uncertainties around disability. Folks will often explain their awkward behaviours around visibly disabled people as “not knowing what to do,” or “not wanting to do the wrong thing.” Disability is, I think, still this really unfamiliar thing, at least when it comes to disabled people being out and about, earning and spending money, making sexual choices, window shopping, and just generally not being off in some special space. I’m still working out ways to help nondisabled folks, or folks with limited experiences around a variety of disabilities, understand some of the basics of giving assistance, without turning it into a list of “do”s and “don’t”s that ends up looking a lot like this guide.

A lot of the negative and nervous responses to disability from nondisabled folks come from a place of “OMG, what if that (being disabled) was me” and also from a place of “This person isn’t anything like me; I can’t relate.” The fear most people have around disability is deep and it’s unlikely that that fear isn’t going to afect the interactions of people who feel it with visibly disabled folks.

So, you’ve got a person looking for sex toys or sexually explicit materials, or condoms, or maybe they don’t even know what they’re looking for, and you’ve got a person feeling undone by the physical reminder of disability in front of them. Remember what I said above about hostility? Yes, that happened. No, it wasn’t fun, but that’s a story for another time.

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I think the reason that being greeted with hostility in a sex toy store surprised me so much was that, by and large, people who work in sexuality-related fields have been some of the warmest, most respectful, most creative and disability-aware people I’ve ever met. But these have alsso been the people who recognize that both disability and sexuality are mega-giant issues that can undo people’s sense of security. More happily, these are also the people who realize that sex and sexuality can be fun, creative, and playful, and is something everyone has, and can access, if they want.

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Oh, and in case you wanted to know: My instincts were spot-on (pun intended, maybe?) about that toy. It didn’t work for my body.

And, the toy store with no steps? Come As You Are, though, sadly, they had to close their doors in 2016.

2015: The year sex and disability voices were louder and prouder than ever.

Dec 312015
 

2015 really does feel like it was a turning point – no, a launching pad – for sex and disability conversations.

Here’s just a small sampling:

Mainstream media outlets approached sex and disability in ways they rarely have before, including coverage from the CBC, Cosmo, The atlantic, and The Sydney Morning Herald.

Toronto saw its first disability-friendly sex party organized by the founders (both disabled) of Deliciously Disabled.

The ever-popular Huffington Post’s “gay voices” section included a regular column on sex and disability for queer folks, including an article on just what it was like to plan that sex party anyway.

Wright State University held it’s first ever Sex and Disability Conference

See my coverage of Day 1, Day 2, and Day 3.

An organization in France published the first two issues of a quarterly magazine on love and sex written by and for people with intellectual disabilities. Titled “J’existe et je veux” (“I exist and I want), this magazine might be the first publication of its kind released anywhere, in any language.

Disabled women presented a panel on disability concerns, including sexuality at a prominent feminist conference. Even in 2015, inclusion of disabled women in feminist spaces is rare and noteworthy.

The Disability Visibility Project interviewed Olivia Davis about attitudes towrds disabled people’s sexualities, and the need for open, honest conversations about sex.

Disabled people were also writing, writing, writing in 2015, publishing raw, honest, educational pieces including everything from 3 Ways You Might Be Marginalizing Disabled Asexual People (And What to Do About It) to Being Disabled, Kinky, & Into BDSM – and of course Kylie Jenner’s sexualized photo shoot with wheelchair as prop stirred up all kinds of sex and disability commentary by disabled voices.

And then there were books.

I think this might have been a record year for sex and disability related books.

Already Doing It: Intellectual Disability and Sexual Agency

QDA: A Queer Disability Anthology (Reviewed here.)

Poetic Confessions

Trophy Wife: Sexuality. Disability. Femininity.

Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement

These two aren’t specific to sex and sexuality, but are incredibly meaningful contributions to disability history.

Fading Scars: My Queer Disability History

NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

What were your 2015 sex and disability discoveries?

The Kylie Jenner Photo Shoot Is Confused about Sex and Disability Tropes

Dec 042015
 

We need to talk about the fact that Kylie Jenner, a conventionally beautiful able-bodied woman who fits societal standards of beauty in almost every way is allowed to be sexy and edgy in a wheelchair, when that reality is so often denied to many wheelchair using women. We need to talk about the fact that disabled people, real disabled people, are still largely missing in media representation, especially media representation around beauty and sexuality.

–Karin Hitselberger: Why We Need to Talk about Kylie Jenner

When I first heard about Kylie Jenner’s wheelchair enabled photo shoot, I wondered: why a wheelchair? Why not a toilet, or adult-sized infant car seat, or a Victorian fainting couch.

Any of those could have helped her show how disempowered and imprisoned she feels by the media, and the first two would have given her plenty of options for the sexualized edginess she, or at least her photographers, were going for.

Instead, she chose a wheelchair, and BDSM gear, neither of which mean what she or the photographer thinks they mean.

So much has already been said about the choice to use a wheelchair in this shoot. I’ve stayed quiet all this week, because as someone who doesn’t use a wheelchair, this isn’t my conversation to have. but I wanted to pull this all together and look at it through a broader sexuality and disability lens.

let’s start with the BDSM gear.

Kylie wants to explore her identity. Lots of people use bondage gear, and BDSM gear in general, to explore who they are. Lots more use it to express who they are.

My collar is my mirror. It’s my wellness check. It’s my sense of freedom because it’s my sense of stability. It represents to me the journey I made through myself and my partner to earn my collar; The hard work and self-exploration and acceptance I had to go through to get it. When my partner takes me by my collar or cuffs me, or in any way binds me, it’s a reminder that I am face to face with myself in this life, and I’d better be the person I want to see close-up in those moments when I can’t break free. (Well, i could, but safe words aside, assuming they’re not part of this.)

I get bound for the kink, but within the kink, for me, is a much deeper place where I can feel safe and comfortable with who I am. Beyond that, my collar is my safety, reminding me I’m not taking on the world alone.

— Written by a friend (who is disabled, but isn’t a wheelchair user) when I asked about what the gear means in her BDSM relationship.

That’s not exactly imprisonment…and it’s not self-reinvention either. Sure, for some people, bondage gear is about putting on a costume, about becoming someone else, about doing something edgy and contrary, about reinventing oneself, even just for a little bit, but for most people, whether they’re dominant or submissive, BDSM gear is about expressing themselves more fully, not hiding from who they are.

Kylie was going for sexy. That’s usually what bare skin, corsets, and other fetish wear means.

Problem is, visibly disabled people (including folks in wheelchairs) aren’t read as passively sexual. Instead, we’re frequently read as nonsexual, as unlikely candidates for a sexual or romantic relationship. Or, we’re seen as sexually desirable because of our disabilities, which is a good thing, or a bad thing depending on who you talk to. Hint: Being transparent about finding disability attractive and sexy is good. Only being attracted to someone because they’re disabled (that is, not seeing them as a whole person) is not-so-good, unless the person is cool with it.

Either way, the sexuality of people with any type of disability isn’t automatically passive. People with disabilities have a full range of sexualities and sexual feelings, from not experiencing sexual desire or attraction (asexuality), to being submissive (not passive) in their sexual play, to desiring a traditional heterosexual relationship, to… pretty much anything anyone could imagine. It’s almost always the beliefs of others, not disability, that limit disabled people’s sexualities.

Now, the wheelchair.

Yes, wheelchairs do signify public scrutiny.

We’re told, by a representative from the magazine that the photo shoot “aims to unpack Kylie’s status as both engineer of her image and object of attention.”

most disabled folks don’t get to engineer whether they’re objects of attention or not.

Emily Ladau tells us just exactly what that scrutiny looks and feels like for her:

As a visibly disabled woman, I never have the option to choose if I want to put myself on display. People stare at me, often directly and unabashedly, because my wheelchair demands attention. I’m not sitting to make a cultural statement, though. I’m sitting because it’s my reality.

A nondisabled person using a wheelchair in a symbolic way is treading a fine line between accuracy and appropriation because she’s dictating what the wheelchair means. yet the wheelchair can have no real meaning for her since she simply sits in it for the photo shoot, then gets up and walks away.

For someone who needs a wheelchair, it doesn’t – can’t – just mean one thing.

Wheelchair users need their chairs for diferent purposes. Some folks only use a wheelchair when they leave their house; others can’t get out of bed without one. What someone needs their chair for, how long they’ve had to use one, why they had to start using a chair in the first place – all these things are going to afect how someone feels about their chair, and what symbolic meaning it has.

Disability rights advocate and sexologist Bethany Stevens posted on her Facebook page: “Disability can be very glamorous, wheels can be wings with bling.” Activist Ophelia Brown doesn’t think that way about her chair; she says that her wheelchair isn’t a fashion accessory.

But, Ophelia does agree thather wheelchair is her wings.

Bethany and Ophelia are both crystal clear; their wheelchairs are what make it possible to do what they do, to live the way they want to live. Their wheelchairs are freedom, not prison.

It’s great that Kylie loves to experiment with her looks. A person with a visible disability can change their looks all they want to, it’s still most often the disability, or the assistive device, that people will notice first, or pay most attention to.

S.E. Smith points out that the whole photo shoot would have read very differently if it had been done with a disabled model, and could have made a “powerful statement” challenging the idea that women are there to be watched, that disability equals vulnerability, that a woman can only express sexiness by making herself appear passive, or at least for what passes as passive in the public imagination.

If I’m told I’m attractive, it’s often said that I’m “attractive for a girl in a wheelchair.” But Jenner is considered sexy, full stop, because people know the wheelchair is only pretend.

— Emily Ladau: Dear Kylie Jenner, My Wheelchair Isn’t a Prop: Stop Playing Dress-up Games With My Reality

If Kylie Jenner really wanted to explore the way mass media represents her, she could have started by challenging that representation. What better way to explore feeling powerless than to express power? Instead, the photo shoot put her in a traditional feminine role (revealing outfit, serving drinks).

If Kylie Jenner really wanted to explore her powerlessness in the face of media sscrutiny, she could have started by exploring her sexual agency. She’s a young, conventionally attractive white woman. She’d have plenty of tropes and symbols to draw on for a photo shoot expressing how confined and controlled she feels without appropriating other symbols and totally missing the mark on what they mean.

Here’s a photo shoot with a disabled woman, a wheelchair user, exploring all parts of her life, including her sexuality.

Ready, Sexy, Able Voices: Kaleigh Trace

Nov 182015
 

Writer and sex educator Kaleigh Trace “works with words and dildos.”

I first met Kaleigh when she presented at the Guelph Sexuality Confrence on disability, desirability, and resistance. She’s thoughtful and charmingly funny in person, as well as an ace presenter. She’s also a refreshing voice in the sex and disability field, with lots of personal and professional experience behind her.

Kaleigh graciously answered some questions about her work for Ready, Sexy, Able. Thanks Kaleigh!

——–

Robin:You lecture and write a lot about sexuality and disability, but you’re also a sex educator at a feminist sex shop and you do some general disability awareness education, right? Can you tell us more about what you do? What does a typical Kaleigh work day look like?

Kaleigh:My days really vary all the time. Most days I endure doctors in the morning and sell sex toys in the afternoon, which I suppose is a pretty good balance of the bad and the good. I often teach workshops for Venus Envy in the evening, covering topics ranging from sex & disability to oral sex. And then it seems seasonally I find myself doing the really fun stuff of going to conferences and/or organizing around disability justice. Last winter a friend and I co-organized a protest to try and urge the city to more affectively clear the sidewalks, so that disabled folks could finally leave our homes (East Coast Canadian winters aren’t pretty). And then this past summer I presented at a different conference/festival every other week it seemed, which meant a lot of talking about disability politics with like-minded people.
I suppose that ultimately, my days aren’t typical. Which I like. And even though I am only occasionally doing big projects that advocate for disability justice & inclusion (like protests and presentations), I sort of feel like being a politicized disabled femme moving through the world means I am doing a little bit of advocating and a little bit of resisting all the time.

Robin: What would you most like disabled people to know about sex, sexuality, and intimate relationships?

Kaleigh: Oh my. I’m not sure. As a younger, less self-assured disabled person I would have loved to have had older disabled peers around to tell me that my body is valuable, desirable, sexual and good in and of itself. In my experience, having a body that deviated from the norm made it more difficult for me to figure out how to love myself and how to explore my sexuality.
For folks who are already fully imbued with that knowledge…I hope people know to communicate. Talk, sign, text, blink – however communication works for you. Essentially, use your body to take the space you need. Ask for pleasure. Demand for access. Our capacity to communicate for ourselves about ourselves is such a powerful tool in exploring sex, sexuality and intimacy.

Robin: What would you most like nondisabled people to know about disabled people’s experiences of sex, sexuality, or intimate relationships?

Kaleigh: Hm. Check yourself? Check the assumptions you have made about how bodies work and what bodies are desirable. Learn how to ask questions about comfort, positioning, needs, pleasure, access, all the things. Don’t assume that all bodies work the same, that all people require the same touch. Just check yourself.

Robin: Which writers and activists do you turn to over and over again for education or inspiration?

Kaleigh: I could reread the words of Mia Mingus, Eli Clare, and leah lakshmi piepzna-samarasinha over & over again. Reading other disabled activists writing about their experiences is the best way for me to feel kinship and to learn more about myself & my community. It’s a sweet relief and the perfect challenge all at once.
And then sometimes, I just watch youtube clips of Gillian Anderson being tough as fuck over and over again, because watching femmes get shit done is like listening to the perfect pump-up power jam.

Robin: What are you working on right now? What’s coming up for you in the next year?

Kaleigh: Good, hard question! I don’t totally know. I am reticent to speak about the future because it’s all a little murky. My book, Hot, Wet & Shaking: How I Learned to Talk About Sex, has been alive in the world for just over a year now, and I am feeling really ready to move forward from it and write some new work to attach my name to. I would like to get back to blogging, after taking a small hiatus. I would like to travel more and connect with other disabled folks across Canada & the U.S.
I did just finish putting together a new website where I want to write new posts pertaining to sex but also all things disability related. I’m excited about that! You can now find me at KaleighTrace.com. My previous blog, The Fucking Facts, was really fun and brought a lot of success and positivity to my life. But I sometimes felt a bit required to only write about sex there, and I would like to have space on KaleighTrace.com to write about everything from orgasms to femme politics to disability survival. So, please check that out to learn about my future endeavors and new projects.

Asexuality, Poetry, and Maternal Identity: Breaking silences Day 1

Nov 092015
 

Thoughts and observations from day one of Breaking Silences, Wright State University’s first sex and disability conference.

I opted for participating in discussions over taking notes, so these session summaries are just that, summaries of the content and my reactions to it.

Bringing (A)Sexy Back: Exploring Disability and Asexuality

Cara Liebowitz of That Crazy Crippled Chick wants to make sure we’re not leaving asexual disabled people out of conversations around sex and disability.

People with disabilities have been treated as nonsexual beings for such a long time. The efforts to correct that narrative have resulted in focussing on disabled people’s sexiness and sex lives, not on sexualities as a whole. IN general, for people who are disabled or nondisabled, we have a narrative that tells us that sex is all about looks, and about bodies, and about having sex with partners, and there’s practically no room for the words of people who have looked at and thought about their sexualities, and realized that they don’t experience sexual attraction or desire the same ways, if at all.

I’ve understood asexuality theoretically for a while now, but Cara gave some examples that helped me understand the experience better.

IN college, Cara’s friends would say they were “horny” all the time. Cara asks: What does horny feel like?

Asexuality isn’t necessarily the absence of sexual thoughts or feelings. Many asexual people desire and enjoy romantic relationships. Many have “passionate friendships” – Cara described these as close friendships with lots of physical (not sexual) intimacy like hand-holding, snuggling, etc. this makes a lot of sense to me since most people thrive on touch.

Some people on the asexuality spectrum do have some kinds of sex, with themselves, partners, or both.

Cara gave the example of an asexual person exploring sexual activity with a romantic partner. finding that they Enjoy learning about their body and they enjoy closeness and connection with their partner, but that they’d be just as happy having a pizza and movie date.

What does all this have to do with disability?

Some disabled people are asexual.

When sex and disability researchers and activists criticize the way disabled people are wrongly seen as asexual, we can be implying that asexuality is bad.

Cara suggests we use the terms nonsexual and desexualized to talk about the erasure of disabled people’s sexualities.

People also tend to use a lot of ableist language when talking about asexuality – assuming something must be medically wrong with an asexual person, that people are broken for not wanting sex.

Lack of sex drive. Disintrest in being sexual with a partner. Those are only problems if the person experiencing them says they’re problems.

Cara reminds us not to use all-or-nothing language in our quest to prove the sexiness of disabled people. Many disabled people want their sexual desires to be recognized and celebrated for what they are, but not all.

Two informative pieces Cara referenced in her presentation:
If You Can See The Invisible Elephant, Please Describe It

Asexuality and Disability

Sins Invalid

I think the announcement that Sins Invalid would be one of the Keynote presentations sold me on going to this conference.

It was worth the trip for that alone, though I was disappointed the whole Sins Invalid cast wasn’t there to give us the energy and passion of a live performance.

But, we did get to see a live performance by Maria Palacios the “Goddess On Wheels”, a showing of the Sins Invalid documentary, and a question-and-answer session with Maria Palacios and Sins Invalid Founder Patty Berne.

The documentary is touching, powerful, creative, unabashedly sexual, edge-pushing, and thought-provoking. I especially appreciated that the performance includes hard-hitting and painful details of disability history, including the forced sterilization of disabled people and medical experimentation on people of colour. That history is important, and not really well-known, and adds complexity to the sexier elements of the film. The beautiful is so much more beautiful when set against the ugly.

Maria palacios’ performance was sensual, her poetry both lyrical and firmly planted in her lived experiences of disability.

This line has stuck with me:

Flirting is the projection
Of what the soul wants to say
What the heart wants to speak.

You can read some of Maria’s poetry here

Exposing Undergraduates in Human Sexuality Courses to Sexual Health Among People with Disability

Frederick Peterson Psy.D. and Colleagues

This was an overview of some preliminary research by professors who teach undergraduate human sexuality courses.

They wanted to know what kinds of material on sexualities and disabled people they should include in these courses, so they asked their students to anonymously submit any questions they had on the topic.
The most common questions asked, in different ways, how disabled people have sex, or if disabled people even want sex and feel sexual desire

I’ll admit I was surprised by this. I suppose I thought that even if people couldn’t figure out how physically disabled people would go about engaging in the acts around sexual pleasure, that they’d at least not have questions about whether disabled folks even desire that pleasure.

Reasons suggested for these responses: Students’ lack of knowledge about sex in general. Lack of exposure to concepts that disabled people date, have intimate relationships, have sex. Lack of exposure to disabled people in general.
The researchers also suspect that lack of sexual diversity and accurate information in education systems such as Abstenince Only Until Marriage programs (which often teaches incorrect facts about sex, sexuality, safer sex and birth control) also might colour students’ idea of what is possible.

This research is fascinating, and I’m eager to see what the next stages will be, including what conclusions the researchers will draw about how to teach undergraduate students about sexuality for all people, including folks with disabilities. Pete (as he likes to be called) pointed out: The research can only tell educators so much, since students only know to ask about what they don’t know. there could be and is plenty that people don’t know they don’t know.

Reclaiming Maternal Identity: The Impact of Forced Sterilization of Women with Disabilities

Alette Coble-Temple , Psy.D.
John F. Kennedy University
Kayoko Yokoyama, Ph.D.
John F. Kennedy University
Megan Carlos, Ph.D.
American School of Professional Psychology Argosy University, San Francisco Bay Area

Loved this presentation! There’s a lot to say about and in response to this topic, so I’ll just give a short overview of the presentation here.

Experiencing microaggressions day after day can negatively impact a person’s mental health. (or example: “No, but where are you REALLY from?”-Racial Microaggressions and their effect on Mental Health.

With this in mind, the presenters started with the idea that the history of forced sterilization and other reproductive violences against people with disabilities has left its mark on the identities of girls and women with disabilities, especially around reproduction and parenting.

Some examples of microaggressions against disabled girls and women around reproduction:

  • Doubt that a visibly disabled woman’s baby is hers.
  • a visibly disabled parent being asked who takes care of their baby?
  • Healthcare providers showing surprise when a disabled patient becomes pregnant
  • Healthcare providers (and others) assuming that a disabled pregnant person will want or need to terminate the pregnancy.

It’s not just reproductive injustices of the past that stand in the way of disabled people becoming parents.

Many states have laws preventing disabled people from becoming parents.

Some people hold a deep (and well-founded) fear that their baby or child will be taken away from them by social services. This has happened many times, for no other reason than that one or both parents had a disability. Removing a child from its family when it is happy and safe in that family is an unnecessary trauma for the child, parents, and other family members.

Disability is still used in divorce proceedings as a reason to award full custody of children to a nondisabled parents, whether that’s the best choice for the child or not.

The statistics and stories in this presentation were grim, but the overall feeling was one of mutual support.

The presenters were open to questions, and invited audience members to talk about their own experiences and feelings about having children (or not having children). Two of us shared that we had chosen not to have children for reasons related to our disabilities, and our stories were welcomed as part of the overall narrative around disabled people, choice, and parenting.

Next up: Day two of Breaking Silences: “Don’t Call Me Inspirational, and, Research Into Deaf People’s Experiences of Interpersonal Violence.

Ready, Sexy, Able Voices: Interview with Sexologist Bethany Stevens

Oct 102015
 

I first met Bethany Stevens at American University, where we were both speaking on the Exquisite, Beauty is Disability ableism awareness panel.

Right away I noticed her confidence and passion (not to mention her brilliant mind that didn’t seem to miss a thing) and have been following her work for the past three years.

Bethany generously agreed to answer some questions on what drives her work in the field of sexuality and disability.

***

Robin: You call yourself “an uppity crip scholar-activist and sexologist.”
Can you tell us what that means?

Bethany: I discovered the word “crip” through Laura Hershey’s poetry in my early 20s, and
identified with the political punch of the word so much that I started signing my email with “uppity crip
activist.” I was ridiculous enough to send my law professors emails with that signature line, whimakes me giggle now.

I am uppity – forceful, bound for resistance, and vocal when discontent about
discrimination. As I have aged, my investment in scholarship has grown to be the primary arm of my
activist life (and I have dropped “uppity crip activist” from my signature line).

My writing and speaking are as important activist expressions as my formal activist work, such as when I successfully fought for
an accessible testing center for students with disabilities to be built at the University of Florida. As of 2009, I took on the label sexologist after finishing my time in Morehouse School of Medicine’s Center of Sexual Health Scholar’s Program following completion of my Masters degree in Sexuality Studies at SF State. All together, these labels mean I am relentlessly vocal about the sexual and social value of disabled people. I may not be protesting as much, but my activist voice remains strong in me and will
always inform my scholarship. Disability culture and communities are a big part of my chosen family and home, my work will always be informed by these ethics.

Robin: What would you most like disabled people to know about sex, sexuality, and intimate relationships?

Bethany: It feels so simple yet deserves reiteration until the world knows this truth: disabled people are worthy of pleasure and love. We can give and receive pleasure in so many ways. Our bodies and minds sometimes require adaption to engage in sexual activities with us; those adaptions become
artful shifts away from “normal” modes of existence, opening up space to value different ways of being.
Meaning the ways we accommodate our bodies and minds can teach EVERYONE so much about sex – like communicating about where the body has sensation, slowing down to avoid triggering trauma for someone, or using specific strategies, like focused breath to enhance pleasure.

I love that if people got hip to disability and sex that this could be THE catalyst for a huge sexual awakening. While I wait for the massive awakening, I enjoy the moments of individual transformation and continue speaking to affirm disabled people’s sexual lives.

Robin: What would you most like nondisable people to know about disabled people’s experiences of sex, sexuality, or intimate relationships?

Bethany: Relax, we have sex or we don’t. Some of us are asexual, just like nondisabled people.

While it’s “cute” you might think it’s totally cool to ask a disabled stranger whether they can have sex – it’s not. Don’t be this person, please. Stop with the noise.

Disabled people are not all that different from the nondisabled people running around the planet. I’m not suggesting that disabled people do not experience unique structural and attitudinal barriers stemming from ableism, and other systems of
power associated with other identity markers. I am merely pointing to the fact that disabled people likely think of sex as much as others, we have been rejected, we have rejected people, life happens – and it doesn’t spare us because we walk with crutches or stim.

I would also encourage nondisabled people to query whether they find disabled people attractive. It’s important when doing this to unpack – or really describe – what disability looks like to the person. The key here is to figure out if disability is deemed attractive, why or why not AND where those feelings come from. I am not suggesting that everyone should be hot for me, for example, however when a
person has an all out ban against being attracted to disabled people there is something deeper going on.

Much like some authors have been saying the inclusion of “no fatties” or “no blacks” on Tindr profiles are reflections of fatphobia and racism, excluding disability just sets the same kind of prejudice into operation. Disability isn’t attractive because of ableist garbage we have been feed through various social means our entire lives.

One side-note: do not tell a disabled person or our friends that we are somehow either brave or going “to heaven” just for being us. Truthfully, before speaking these off the wall statements, think: “Would I like a stranger saying this to me?” before serving us microaggressions.

Robin: What are your favourite scholarly, activist, sexuality, or disability resources?

Bethany: Good grief, you know this is a hard one when you are a nerd. My most recent highly cited website is yours! The authors that have truly shaped me have been Marta Russell (wrote about how people make profit off disabled people), Barbara Waxman (named the need to politicize sexual pleasure of disabled people AND named disability hate), Laura Hershey (her artful poetry made me reconsider aspects of loving myself), Cory Silverberg (a true ally in the verb, not noun sense).

Robin: What are you working on right now?

Bethany: My nerd is showing again, because I am working on getting myself together to apply to PhD programs in sociology. There is a particular program that has a sexuality and gender focus that I am eager to start. I thrive on deadlines and generally in the classroom. I love teaching and with the degrees I have now, I am locked into teaching law and policy. While I appreciate those aspects of life, and bring them into my work, I need more space to talk about the social aspects of sexuality. That is where my
passion exists and I want to nurture it. Within the last year, my invited university talks have been focused on aspects of pleasure – how to politicize it and specific ways to achieve it. I am working on some projects with my friend and colleague Robin Wilson-Beattie (@sexAbled) that will take us into new audiences, which I am not ready to speak
of yet but would ask your readers to send some good energy to us. Our world needs more conversations on sexuality, because sexual health is central to our personhood, and our work is crucial to broadening those conversations to be inclusive of disability.

Bethany Stevens is a member of the inaugural class of Center of Excellence for Sexual Scholars program
at Morehouse School of Medicine (MSM), working under the 16th Surgeon General of the United States
Dr. David Satcher. From 2009-2013, she was a policy analyst and faculty member in the School of Public
Health (SPH) at Georgia State University. She continues to promote disability justice through disability
advocacy and independent scholarship.

To learn more about Bethany read her full
bio and check out what she
would tell her teenage self about sexuality.

You can find and dialogue with Bethany on Twitter.

How do disabled people have sex, anyway?

Aug 032015
 

Can we all agree that asking random people on the street (or in the mall, or anywhere, really) about their sex life is just plain creepy?

People with disabilities are asked, much more often than you’d think, how, or if, we have sex. No, really, this happens all the time. If it’s not about sex directly, it’s something to do with relationship status. Maybe it’s random questions about whether you’re married, or about your dating life. Maybe it’s your server at the fancy restaurant assuming the person you’re sharing a romantic candlelight dinner with is “just” a friend, or worse yet, your brother or payed caregiver.

***

Honey, if they’re with me then they’re not looking for normal — and I don’t mean because I’m crippled. Because sex with me can mean any fetish, any request you’ve always been afraid to make, any position you can think of. Because sex with me can be watching porn together, reading erotica together, or preferably making our own of both…

– Kelsey Warren, My Body

This poem is Kelsey’s answer to the question about her sexual relationship she couldn’t laugh off.

It’s powerful, edgy, and provocative.

As with anything both taboo and sexy, Internet news sources picked this up right away, with headlines like What It’s Like to Have Sex with a person With a Disability.

Kelsey’s sexuality is clearly broad and flexible, and she has the gift of a lovely voice and the art of creating words that grip us and won’t let go.

I know I’ll be going back to this video for inspiration -the sexy kind, not the inspiration porn kind.

But this doesn’t speak to all disabled people’s sexualities – and I doubt Kelsey means it to, since she named her poem My Body – even as it’s the perfect challenge to the idea that disability makes someone not-sexy and incapable of or uninterested in sex, or to the idea that “normal sex” – (whatever that is) – is impossible for disabled folks.

The lives of people with disabilities are so often boiled down to being about our disabilities alone, – usually because nondisabled folks can’t imagine how life with a disability would work – that the idea of grocery shopping, or getting dressed, or having sex with one’s partner become exciting or alien concepts nondisabled people want to learn about the way they’d learn about astronomy or the mating habits of giraffes.

There’s also the assumption that all of these life activities are controlled first and foremost by the disability – that disability changes everything. Newsflash: It doesn’t. We’re just as likely to swoon over cute puppy pictures (or stories for those of us who can’t see the pictures), have ridiculous laugh-fests with friends, or get frustrated over the rising costs of milk. The ways we get dressed – whether it’s how we know what colours we’re wearing or how we put on our underwear or tie our shoes – are just the ways we dress, not anything better, or worse, than dressing the “normal” way – because that way of dressing is normal for us.

***

“I want to learn more about accommodating people with disabilities if I’m going to have sex with them.”

This was one of the answers I got to a question on Twitter asking what people most wanted to learn about sex and disability.

Since it was sex we were talking about, I asked if this wasn’t actually more about pleasure than about accommodation. When I think about accommodation, at least when it’s related to disability, I think of Braille signs on elevator buttons, equal opportunity employment, or buses that announce stops and have wheelchair lifts – not sexual intimacy or X-rated play time.

It turned out this person was concerned about hurting a potential disabled partner if he didn’t understand how their disabled body worked.

Fair enough – but… We don’t know how anyone’s body works until they tell us, until we’ve spent enough time with it to learn what every little sound or wiggle means. It ultimately doesn’t matter what someone’s body does or doesn’t do; no “Sex and Disability 101” Or “Sexual Exploration for Everyone” workshop is going to be able to tell you how to have sex with them.

The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges come up when we’re faced with things we’ve never encountered, and sometimes have never heard of.

Knowing something about different disabilities can take some of the mystery of disability out of the equation, and that’s a good thing. The more familiar words and realities like cerebral palsy, hemiplegia, degenerative retinal diseases, PTSD, etc, are, the less unfamiliar they’ll be to people, and the quicker they can get on with their everyday business, including getting it on with a new lover. It’s also a relief to disabled folks when people understand the basics of what we’re telling them, even if it’s as simple as knowing basic human anatomy.

Sure, there are general disability-related differences in romance and sex we can pretty much always assume to be true: A blind man can’t glance across the room and entice an alluring stranger with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, with going to the bathroom after sex. A deaf person will likely want to leave the lights on so they can read a lover’s lips, watch body language, or do whatever they need to do to communicate while getting it on.

Understanding disability by studying WebMD and Wikipedia won’t help anyone learn a lovers’ body.

We want answers, and formulas, for sex, and for understanding disabilities, and there just aren’t formulas for understanding either, or both together.

No one’s limbs work the same way, no one’s brain chemicals do the same things, no one person likes exactly the same sexual activities in the same way.

Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate.

I don’t necessarily suggest conducting an interview with someone you want to have sex with – unless question-and-answer sessions light your erotic fire, and theirs – but discussing questions like the ones below can be a good place to start if you’re just not sure what to do with this playmate you find so hot:

  • What feels good to you?>
  • How do we have sex so I don’t hurt you?
  • I want (insert your deepest fantasy, or just what your body craves that day). What do you want?

***

I think the connection we need to keep making between disabled people and sexuality is our right to want sex, to think about sex, to be sexy and express our sexuality – or not to do any of those if we choose not to. For some people that includes the right to have sex, but for others it’s more about the right – and the responsibility – to live in a world that’s so often about sex appeal, and where so many interactions are expected to have sexual overtones.

…unless you’re disabled, in which case you’re assumed to be childlike, uninterested in sex and lacking a sexuality, even unaware of sex; in other words, nonsexual.

We used to describe these attitudes towards disabled people’s sexualities as seeing people with disabilities as “asexual.”

Asexuality is, however, an actual identity or orientation. It’s not generally seen as an absence of sexuality, but as a way some individuals relate to their own sexualities or with the idea of sexuality in general.

Disabled people can, and do, identify as asexual, without that having anything to do with their disability.

I think highlighting the variability of disabled people’s sexualities is important, and sometimes overlooked.

We emphasize so much that disabled people are sexual beings, that we forget that we’re allowed to be lousy lovers, or to have sexual relationships that don’t work, or to have lovers who just don’t enjoy our sexiness without that making them narrow-minded, ableist jerks. We forget that having sexual rights also means we have the right to be lousy in bed, that we have the right not to shock others with our sexualities, that we have the right to be celibate by choice.

So many disabled people don’t get choices, though. They don’t get privacy, or say in who provides their personal care, or who knows about their personal business. The idea that disabled folks who need physical assistance with daily personal-care needs (dressing, bathing, caring for their home, etc.) could also get assistance (without judgment) with the parts of their sexual and intimate lives they physically can’t negotiate themselves is deeply complicated.

There are no easy answers – so much of what I’ve brought up here would, and has, fill books – and there are no quick fixes for making mass changes to attitudes about disability, or sex, or disabled people expressing our sexualities. We’re talking about changing generations of attitudes about two experiences people hold so much fear around in general.

Maybe one place to start, for everyone, is to expand what we think of as sex in the first place.

Disability, Desirability, and Resistance

Jul 152015
 

Last month I attended the 37th Annual Guelph Sexuality Conference.

The lineup was amazing, and I learned so much – about consent, about community-based research with youth who have HIV, about how to use gender-neutral language to talk about sexuality and relationships – and about sexuality and disability.

Kaleigh Trace presented Desirability as Resistance: Reading Disability Differently, the presentation title that finally got me to stop dithering and register for the conference.

I had just read Kaleigh’s sexy, funny, thought-provoking book and was excited to meet her and learn more from her.

Workshop Description:

The aim of this workshop is to critically examine our internalized (and often ableist) ideas about what it means to be disabled, and rewrite these constructs by looking at some of the work being done by radical disability activists today. In particular we will examine disabled activists who work to be visibly sexual. As such, this workshop will benefit all folks who work with people with disabilities and any individuals working in sex ed. through a look at disability and sexuality.

One of the beautiful things about this session was how open and comfortable it felt to be there. Kaleigh got her participants laughing, and gave us plenty to think about, but where she really shines as a presenter is in presenting enough information, and asking the right questions, to spark open and emotionally safe participant conversations. I think we learned as much from each other as we did from her, and most people felt able to share experiences and opinions that made them more vulnerable to the rest of us. Kaleigh also does not set herself up as an authority. She was very clear with us that she speaks about what she’s learned and experienced, from her perspective as a disabled white cisgender woman – hers are not the only opinions or lived realities.

Kaleigh introduced us to the justice model for understanding and talking about disability. Two of the most well-known models of disability are the medical and social models. The medical model focuses on “fixing” disabilities, and people who follow it tend, in general, to ignore the expertise and abilities of disabled people themselves. The social model teaches that society’s prejudice and lack of physical access and acceptance is what disables people, but fails to take into account that many people are disabled by pain or illness, individual situations that society, as a whole, can’t do anything about. A justice model of disability, helps us look not only at the social roots and causes discrimination and exclusion of disabled people, but also the individual histories, experiences, and identities that shape each person’s life.

We talked about desirability, about how we’re taught that disability is the opposite of beautiful or attractive – that any body that doesn’t conform to beauty standards is automatically considered less than. Beauty standards are different from culture to culture, and have definitely changed over time. Right now in Western cultures, beauty standards are hinged on the ability to conform, to be symmetrical (or, at least, to be asymmetrical in a chic way), to be willing to put your body on display in some way (not necessarily through showing skin), to move and present ourselves only in ways that are pleasing to other people (and it seems to be assumed that everyone will find the same, or similar things, pleasing, appealing, or even sexy).

Kaleigh took us on a quick, informal tour of what desirability has looked like – at least the forms of desirability that have been passed down to us through paintings and, later, photos – through the last 500 years in Western cultures, a look she summarized as “people in hats and dresses.” These looks are modest by modern standards. They also force bodies to conform, by covering them up and making them look the same. It’s hard to see certain kinds of disability and difference when a body is covered by fabric, sometimes from head to toe.

The kinds of clothing that are seen as desirable now, and over, say, the past sixty years, bring attention to the body, and show differences between bodies.

What we find attractive to look at hasn’t quite caught up with this trend, so that when people see more of a disabled or different body, and it doesn’t fit into the beauty or sexual attraction standard, they clasify it as ugly, or even nonsexual.

When disabled people talk about sex, especially about their own sexuality, when we change the stories about what and who is desirable by including ourselves or other disabled people, we’re turning our desirability into an act of resistance.

Resistance is a tricky thing. We talked a lot about what it is, what it looks like, and whether we actually want to do it.

Do we want to challenge stereotypes of how we’re supposed to behave or what we should say just for the sake of challenging stereotypes?

If, in resisting these stereotypes, we’re acting in ways that have us not being true to ourselves, are we really resisting what’s expected of us? Or, are we just performing a different kind of conformity?

Further Reading

Kaleigh’s book: Hot, Wet, and Shaking: How I Learned to Talk about Sex

Some of Kaleigh’s picks for “rad disabled activists”

More sexuality and disability resources.

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