Dealing with rude non-disabled

Article part of a serie published on www.scarleteen.com on July 28, 2017.

Many people with evident physical impairments — like those that require the use of mobility devices — encounter rude questions from nondisabled people on the regular. Those with chronic illnesses and other impairments that might not always be immediately obvious certainly come in for their share as well. Sometimes it feels like we should be selling tickets to the freak show.

Ridiculous and wildly inappropriate questions come from family, friends, complete strangers, and even medical professionals who should know better.

They may want to know: “What’s wrong with you?” “How did you get like that?” “Are you going to get better?” “How do you [ordinary daily task]?” But when it comes to sexuality, many nondisabled people are extremely curious — and rude.

Some seem to think asking for intimate details about your sex life is totally okay. They want to know mechanics and details like: “How do you have sex in a wheelchair?” “Can you…?” If you’re LGBQ, they ramp it up even more. The good old “but how do lesbians have sex?” question goes on steroids when one or both partners is disabled. It doesn’t seem to occur to them that they’re being pretty rude — how would they like it if we went around asking them intimate personal questions?

You have the right to privacy, and to be treated with respect and dignity. That includes the right to decline to discuss private medical information with people, and to pass on an opportunity to talk about whether and how you have sex. The only people who truly need information about your sex life are your sexual partners — in intimate personal communication with each other about how to have joyful, delightful sex — and your doctor, when it’s medically relevant. (“I’m thinking about getting pregnant,” “I’m having vaginal pain,” or “I’m worried I might have an STI.”)

It can be hard to figure out how to deal with people asking invasive questions, particularly if you live in a culture where you’re taught to be polite to others, especially elders, and it’s an important part of your values.

It may feel uncomfortable or even wrong to assert yourself, so let’s start with the soft approach, one endorsed by none other than Miss Manners: The “pardon me?”

“Hey, can you, you know…get it up?”

“Pardon me?”

People ask rude questions for all kinds of reasons — genuine curiosity, confusion, a mistaken attempt at conveying interest, or, yeah, rudeness. A (sometimes rather pointed) “pardon me?” is an answer that’s both perfectly polite and unobjectionable while also putting people on blast that what they’re saying probably isn’t very appropriate. By reflecting the question back on the asker this way, you’re forcing them to rethink whether that question is such a good idea.

If they decide to keep pressing the point, it’s okay to say: “That’s none of your business,” “I don’t feel comfortable discussing personal matters with you,” “I don’t think this is relevant to the conversation,” or just, “You’re being rude, please stop.” Sometimes rephrasing the question and tossing it back at them can also send a pretty clear signal that ends this line of conversation — “How do you have sex in a wheelchair?” “Uh, how do you have sex without one?”

It’s okay to be curious — I’m curious about all kinds of things! — but it’s not okay to use actual living humans like a reference textbook.

There are resources available to nondisabled people who are interested in learning more about disability and sexuality that don’t involve querying every disabled person they meet about their personal lives. (Like this one, for example!) Sometimes nondisabled people feel awkward or uncomfortable and it’s not your job to put them at ease, but redirecting the conversation somewhere else can demonstrate that you have interests beyond your disability; shift the conversation to books, cooking, music, film and television, something in the news, or other topical subjects.

Don’t be afraid to ask for a bailout, either. Your friends should be able to back you up when you’re trapped in the corner with someone who’s quizzing you about whether it’s awkward to have sex when you wear an insulin pump. If you’re out with friends, consider arranging a discreet signal that means “come help me!” so you can escape these kinds of conversations. Your nondisabled friends should also know that it’s okay (and welcome) to intervene even without being asked if they see a disabled person being asked invasive personal questions, and encourage them to push back on speculation about the sex lives of disabled people even when we aren’t in the room.

Many people think it’s okay to ask rude questions because no one has told them not to, or they think the rules don’t apply to them. Letting them know it’s not okay isn’t just good for you, it’s good for society.

Playing the Online Dating Game, in a Wheelchair

Opinion letter by Emily Ladau published on www.nytimes.com on September 27, 2017.

The first time I forayed into online dating, I let my wheelchair show just a little in my photos. The good guys, I hoped, would be so taken by my clever profile and witty banter that they’d be able to look beyond my disability, if they even noticed it at all.

I eagerly began swiping, quickly matching with an attractive man whose profile picture showed him sporting an enormous iguana on his shoulder. Thinking that would make for an easy conversation starter, I messaged him. A few minutes later, he replied, but instead of responding to my reptilian inquiry, he asked, “Are you in a wheelchair?”

I kept my answer simple and told him that yes, I do use a wheelchair, but I was much more interested in the back story of the iguana. Unfortunately, he wasn’t interested at all, messaging back only to say: “Sorry. The wheelchair’s a deal-breaker for me.”

His blunt reply stung, but the feeling was nothing new. Because I was born with my disability — Larsen syndrome, a genetic joint and muscle disorder — I’d already gathered a pile of romantic rejections seemingly big enough to fill an Olympic swimming pool by the time I downloaded Tinder. This particular rejection, however, unleashed a wave of panic within me.

A few months before my initial swipes, I’d gone through a messy breakup with a man I dated for over two years. I truly believed he was the person I’d marry, and that I’d never have to worry about rejection again. When I found myself newly single, I turned to online dating in the hopes of easing my fears that no one else would ever accept me as I am, that lightning doesn’t strike twice.

Not one to be deterred, I persevered, downloading every possible dating app and creating accounts on various dating sites. But I became skittish about revealing my disability, because in an already shallow dating culture, I believed my wheelchair would cause most men to write me off without a second thought. So I decided to hide my disability completely. I cropped my wheelchair out of my photos. I eliminated any mention of it in my profiles. In this virtual world, I could pretend my disability didn’t exist.

I kept up with this facade for a while, messaging matches who were none the wiser. Once I thought I’d spoken with a guy long enough to establish his interest, I’d choose a moment to strike, telling him about my disability. I’d send a long-winded explanation divulging my wheelchair use, reminding him that it didn’t make me any less of person and ending with reassurance that he could ask me questions, should he have any.

After dropping the “wheelchair bomb,” I’d have to brace myself for their reactions, which were always a mixed bag, often ranging from indifference to ghosting. Occasionally, I’d receive an accepting response.

One man that I connected with on Coffee Meets Bagel was incredibly apologetic when I first told him about my wheelchair, as though it was the most tragic thing he’d ever heard. I shut that down by explaining that my disability is part of who I am and it’s nothing to be sorry for. I ended up going on one date with him, and then another. For the second date, my bagel suggested a painting night (a social event that involves paintbrushes, canvases, acrylics and, usually, wine) since I’d told him how much I enjoy them. He found a Groupon and I researched a location, picking out a restaurant in New York City that was supposed to be wheelchair accessible.

As it turned out, the restaurant was accessible, but the painting class was happening in a room upstairs. So, we spent our entire date sitting directly below the painters, eating dinner and making strained conversation with wine-fueled laughter and painting instruction in the background. I was mortified. Following that disaster, I promised my date I’d get his money back. As soon as the company refunded our tickets, I never heard from him again.

It was painful to realize that the hard part isn’t over once someone learns that I’m disabled. Going on dates with me can be a crash course on disability, and I recognize that’s not always easy for non-disabled people to process. But I wasn’t helping the situation by keeping the existence of my disability concealed, springing it upon people only when I thought it felt right. In retrospect, this served only to contribute to the stigma I usually work so hard to fight.

I felt like a hypocrite. In every other area of my life, my disability is front and center. I write and speak endlessly about being a proud, unapologetic disabled woman. It is part of my identity, shaping everything I do and everything I value. But in the online dating world, my disability was my secret shame.

So I decided it was time for a change. I started gradually, making references to my disability throughout my profile, then adding photos in which my wheelchair is clearly visible. I tried to keep things light and humorous. For instance, OKCupid asks users to list six things they can’t live without; one of mine is “the invention of the wheel.”

Still, I found myself having to make sure that potential matches had actually picked up on the trail of clues I’d left. I grew tired of feeling like I needed to deceive men into being interested because society instilled in me that my disability makes me undesirable. Finally, I took the leap I’d been so afraid to make, opening up about disability to strangers whom I hoped would appreciate my honesty and perhaps send me a message.

Prominently in my profile, I wrote: “I’d like to be very upfront about the fact that I use a wheelchair. My disability is part of my identity and I’m a loud, proud disability rights activist, but there is so much more that defines me (you know, like the stuff I’ve got in my profile). I realize some people are hesitant to date a human who experiences the world sitting down. But I’d like to think you’ll keep reading and dive a little deeper. And you’re welcome to ask questions, should you have any.”

Once I added that paragraph, I felt liberated, relieved that anyone I spoke to would have a clearer picture of me. There have been plenty of matches that haven’t worked out, and whether that’s actually because of my disability, I’ll never know. But I had a nearly yearlong relationship with a man I met through OKCupid, so I know it’s possible for lightning to strike again. My dating life remains a comedy of errors, and I still struggle every day with the feeling that my disability means I won’t find love, but at least I’m being true to myself. I’m putting myself out there — my whole self — and it feels good to be proud of who I am.

Disability sex yes!

Serie of articles published on www.scarleteen.com on July 27, 2017.

This is not the be-all-end-all guide to sex and disability because a) it’s not, and b) there just can’t ever be such a thing with any guide to sex. This series, much like your entire sexual life, is a work in progress and an endless, ongoing conversation. We hope this can be a good place for you to get started, and something that starts you on the path of good feelings about sex and your disability.

Sex and disability aren’t often heard in the same sentence, and when they are, there tends to be a lot of sideways glancing and nervous giggling. After all, disabled people aren’t sexual, right?

Wrongity wrong wrong! (Except for the ones who aren’t, but that’s not because they’re disabled.)

Disabled people have bodies, and many people with bodies enjoy being sexual with them, because it feels good, it’s fun, it allows them to get closer to other humans, or they just want to give it a whirl and see what all the fuss is about. Like other people with bodies, you have autonomy, which includes the right to decide if, when, and how you have sex and engage in other activities.

One of the things I hear most frequently from disabled youth is that they’re super interested in sex, but have no idea where to go. They feel like everyone’s going to make fun of them for wanting to explore their sexuality. I call bull on that — wanting to get sexual isn’t weird or gross just because you have a disability, and you can totally have a rewarding, rich, awesome sex life if you’re disabled – no matter what sex looks like to you and how many people are involved. We’re going to explore sex and disability in this ongoing series, because when people do admit that maybe disabled people might like to have sex, they often don’t provide any information about how this whole thing is supposed to work, and that’s no good at all.

Before we get into the nuts and bolts, though, a few things to keep in mind:

Disabled people can and do have sex

Remember that “sex” isn’t just about penises being inside vaginas, though some disabled people do that, too. Human sexuality is incredibly, amazingly diverse, including because humans come in all shapes and sizes. You’re the designer of your sex life, including whatever limits you need as you decide whether you’re ready or not.

Depending on someone’s impairment and level of disability, people may find the use of adaptive tools like wedges, ramps, and more super helpful — and we’ll be talking about those. People with sensory disabilities or paralysis may need to do some experimenting to figure out what looks and feels right for them. Some people with cognitive disabilities that affect their sensory experiences, ability to communicate, and ability to process information may work with their partners on communication and tactics for dealing with awkward moments. Some disabled people find toys and gear like harnesses incredibly helpful for expressing their sexuality. That’s called “adapting,” and there’s nothing unusual about it — nondisabled people adapt their sexual activities to suit their needs, too!

The unfortunate side of this, of course, is that disabled people can also get sexually transmitted infections and some disabled people can get pregnant, too. Safer sex and birth control should definitely be on your agenda. Fortunately, you have an entire website all about these subjects at your very fingertips.

There is nothing wrong with disabled sexuality

Disabled sexuality is very stigmatized in many cultures, and there are a lot of reasons why, some of which start with the belief that disabled people are “innocent” and need to be protected from the big bad world. You may have encountered attitudes suggesting that disabled people who have sex are freaky or weird, and that disabled people only have sex when there’s a fetish involved. That’s not true — lots of disabled people actually have super mundane sex lives, while others are total kinksters, some of whom are even part of the fetish community, but often their fetishes have nothing to do with disability!

Consensual, joyful sexuality isn’t wrong or weird or gross or freaky, even if your body doesn’t always do what you want it to do or your brain likes to fight you and even if other people want to desexualize you because of your impairment. The only people who should be ashamed of themselves are the ones who think they can dictate what your sexuality looks like because they make assumptions about you on the basis of how your body and brain function.

In fact, there’s also something very right about it. Sometimes adaptations that make sex more accessible, fun, and empowering work to your advantage — like being more conscious about communication and taking advantage of props to get comfortable before you get down for sexytimes.

Being disabled doesn’t mean being dateless

You may also have heard that if you’re interested in sex, you’ll be flying solo, because no one will want to date you with your disability. This is grossly untrue!

THIS IS SO VERY UNTRUE.

Lots of disabled people date, both within and outside the disability community. They also get married, raise families with partners, have casual sex, and much, much more. Nondisabled people seem to operate under the belief that they’ve got a lock on this whole dating and relationships thing, and they’re wrong.

Sometimes people use this line because they’re hoping to convince you they’re your only hope — like they’re doing you some huge favor by wanting to date you, so you should take them up on it while you’ve got the chance. Those people should sit in the corner and think about their life choices, because what they’re doing is not okay and may even be predatory. Never feel like you have to settle for someone out of fear that no one else is going to come along, because they totally will, and they’re going to be great.

Disability can make you more vulnerable

So, disability and sex, yay!

BUT.

Being disabled means you face disablism — discrimination on the basis of your disability status (also called “ableism”). That makes you more vulnerable in many settings, including the world of sexuality, because people may view you as an easy target. Disabled people are much more likely to be victims of violent crimes, including sexual assault, than nondisabled people. As you explore your sexuality, you can become even more vulnerable, because we live in a society that doesn’t respect disabled people, their bodies, and their autonomy.

Frustratingly, one of the places that sometimes happens is in medical contexts. While many people associate disabled people with “the medical system,” you may actually spend varying amounts of time in clinical settings — and health care providers can be abusive too, whether it’s a physically abusive nurse or an emotionally manipulative therapist or anything between. Sometimes that abuse can become disabling, whether someone exacerbates an existing disability or makes you feel small and undermines your sense of independence. Health care is an institution, and institutions (including law enforcement, educational settings, and workplaces) tend to abuse people who are vulnerable.

You’re at increased risk of sexual assault, harassment, and other abuse because of society: It is not ever your fault if you are or have been sexually harassed, abused, or assaulted. You deserve to be treated with care and respect, your emotions are valid, and it is not acceptable for the people around you to sweep your experience of trauma under the carpet. 

There are lots of resources available to help you. You may find that some sexual assault crisis centers, hotlines, and services are inaccessible and/or disablist, and that’s a reflection on them, not you. You may also find that should you choose to report, school officials, parents, law enforcement, and other parties may not take you as seriously, and that is also a reflection on them, not you. You know yourself, you know your body, and you know when someone has crossed a line.

We’re going to be talking about issues like how to adapt sex and your environment to meet your body where it is, having sex while autistic, sex and mental health, disability and kink, sexual autonomy and consent, and how to deal with rude nondisabled people who should really know better.

How can you use this series?

Like I said up top, this isn’t the be-all-end-all. It’s also not designed to be read in any particular order. You can just read the pieces most relevant to you, or the ones you’re most curious about, in whatever order you want, whenever you want to read them. Plus, you can share the series (so far) with friends and partners who might benefit from it.

As you’re reading, it can be helpful to think about self-assessment and larger conversations. For example, you can have very long conversations or a lot to say to a sexual partner about which props you need, and which work better or worse, for what sexual activities, and how you like to use them. You can also explore your emotional reaction to sex in some settings, or to sex in general!

But there are likely to be situations where you prefer a quicker “basics” conversation; a simple primer on you and your needs, not an at-length conversation. You’re here for a quick makeout, not a long-term relationship. Sometimes, just making sure the other person knows that it’s 100% necessary your lower back is always supported or else and that it works best for them to let you pick the prop is just fine.

Think about your three most important accommodation needs in a sexual context — what we’re calling the “Big Sexy Three.” What does a partner absolutely need to know about you for you to have a safe, fun, and enjoyable time together, whether you’re making out for the first time or in a long-term relationship?

Maybe it’s: “My head needs to be supported at all times, I need you to check in before touching me, and you need to be careful with my ventilator tubing.” Or: “I’m not comfortable on my knees, I prefer to transfer out of my chair on my own, and please look at me when you’re talking so I can read your lips.” Or: “Sometimes I shut down when I’m overstimulated, so I need to take a break if I start getting quiet; I really strongly dislike the sensation of this particular brand of lube, and it’s hard to breathe when I’m on my back.” We made a little shorthand card for you to use — and for you, the “Big Sexy Three” might be a “Big Sexy Two” or a “Big Sexy Five” — that’s okay!

a card that lets you write out and share your big 3

Are you looking for realtime resources on sexual health, including someone to talk to about sexual assault? Take advantage of the message boards as well as our other direct services, like chat and text — or you can shoot us an email if you’re struggling and need help. We’d also like to hear from you about other topics around sex and disability that you’d like to see explored or addressed that we haven’t gotten to yet. The best sexual health — and the best sexual health education, in our long and humble opinion — is collaborative!

Many thanks to contributors and consultants to this series, including Kayla Whaley

How able-bodied folks can make disabled partner comfortable sex

Article by Nick Moreno published on Wear Your Voice Mag on Jan 25, 2016.

“So how do you… do it?

When it comes to sex, people with disabilities are often times viewed as sexless, not worthy of sexual desire, fetishized and often stripped of our bodily agency.

So how does this all work? Well, it’s a case-by-case basis. Communication is key here. It’s more than just asking what your partner (for the night or, however, long) likes. It’s about setting up a dialogue to make sure you’re both on the same page. Ask us what accommodations we may need.

Accommodations can be anything from pillows, or foam wedges to prop up our legs/bodies (because not all of us can move and hold ourselves into positions that most able-bodied people can get into), to having breaks, taking pain medication, or using safe words, physical cues – like hand gestures – to let your partner know what you need and how they can help at getting you more relaxed. For folks who experience paralysis, ask them how they can be accommodated physically and emotionally. This will vary person to person, so be sure to check in on how you can help. If you’re planning BDSM scenes, be sure to go over safe words, gestures, or positioning materials you might need. Be sure not to overlook anything, this way you’ll be able to have fun and not worry about forgetting anything along the way.

Having sex when you’re disabled can be tricky sometimes. It’s important to trust when we say what we want. Some folks with disabilities are kinksters, some are vanilla, some are queer/trans- we’re all different. Ask what we like. Understand that for some of us, it can be quite difficult to share our bodies with another person. Some of us are insecure about our scars or deformities, but this isn’t true for all of us. Many of us love our bodies and some of us are still learning to love our bodies the way they are

Don’t give into the notion that we don’t like sex or that we don’t have or want sex. Question why this notion exists in the first place. It does so because of ableism and the stigma that people with disabilities are useless and incapable in all facets of life. It’s time that able-bodied people unlearn this and stop using folks with disabilities to satisfy their fetishes.

Once you know how to accommodate your partner have fun! Be honored that they chose to be this raw and vulnerable with you.

Foreplay will work differently for everyone. As with able-bodied folks, focus on the things that arouse you both, say the things they love — all within the person’s boundaries of course. Even during sex, briefly, check in from time to time. It can even be something as simple as “do you like that?”

While it’s great for you to be helpful, be sure not to treat us like we’re completely helpless. Many of us are more self-sufficient than you might think. Take extra care to stay away from words or phrases that are fetishizing, tokenizing, or ableist. This means phrases like “I’ve never been with someone who’s disabled before.” “So do you have sex like normal people?” Steer away from intrusive questions about specific medical history especially if you’re just hooking up. If a person with disabilities wants to share something from their medical history, they will unveil that to you on their own time, at their own accord! There’s no need to draw that out of them. Let us be in charge of our own narratives, and we’ll tell you if we’re comfortable with doing so; and if not — that’s okay too.

All in all, communication is key. Some of us like to have sex hard and dirty, other love a softer approach. Know and fully understand what accommodations we need. We can enjoy sex just as much as able-bodied people.

Sex & Dating While Disabled: Three Women Share What It’s Really Like

Article originaly published on Flare on Feb 14, 2017.

Sex and dating with a disability can be pretty f-cking awkward, whether it’s locating an accessible place to meet for a first date, or finding a caregiver who can operate your vibrator for you. Here, three women who have been there share their experiences—bad and good.

Seven years ago, Stephanie Dixon, the 17-time Paralympic medallist who was widely considered to be one of the best female swimmers in the world, appeared on billboards across the country. In the ad, Dixon, then 26, exudes confidence and defiance in a black one-piece suit: her eyebrow is cocked, her arms are crossed, and her biceps look cut as she poses next to a slogan that reads, “She doesn’t want your sympathy. But her opponents might.” Dixon stands tall and elegant against the stark white backdrop, her left leg muscular and shapely. Her right leg is missing, because she was born a congenital amputee. “It looks like I was designed to have one leg, like a mermaid’s body,” she says.

Dixon looks every bit the poised, self-possessed Olympian, and she was—except for one area of her life in which she felt painfully insecure. “People assumed I was very confident in my body, traipsing around in a bathing suit,” says Dixon. “But that’s very different from being considered a sexual being by someone you’re attracted to.”

For years, Dixon was afraid that potential partners would be disgusted by her body. “I wanted to have sex. I just didn’t think anyone would want to have sex with me,” she says. Because she is missing her leg, she also has only half a bum and half a pelvis, and she was worried that her vagina was disfigured—she’d never compared hers to anyone else’s. Growing up in Brampton, Ont., Dixon’s sex education came entirely from friends (and one incident where, at her mom’s insistence, she and her older brother practiced rolling condoms onto bananas). As a swimmer, she’d gotten used to using tampons at an early age. But accessing the world of dating and sex felt terrifying. In high school, Dixon wore her prosthetic leg under jeans every day to fit in, but it wasn’t until she was 15, and began competing in Paralympic competitions—where everyone was contending with some type of challenge—that she felt comfortable getting her flirt on.

Still, that confidence didn’t translate to her day-to-day life outside the pool. By 19, she’d fallen into a pattern of only making out with men when she was drunk. In university, she would panic when someone showed interest in her at a bar. “Say someone wants to take you home—that is an awkward f-cking conversation,” Dixon says. “At what point do you let them know that one leg is going to be coming off?”

Dating and sex are complicated under the best of circumstances. If you’re living with a disability, the obstacles and challenges extend far beyond the “does-he-like-me?” stress that follows a blind date or the “is-she-into-it?” worries that come with a new sexual partner. Imagine revealing a hidden physical disability to a date for the first time. Finding a caregiver who can operate your vibrator for you, or readjust your limbs (and sometimes those of your partner) into the correct positions so you’re comfortable and don’t get pressure sores. Maybe even asking your partner to help you empty your catheter bag before you go to sleep. Any of those scenarios would do a number on your self-esteem. The challenges of dating with a disability don’t begin and end in the bedroom—they start with education, move to dating and accessible spaces and encompass sexual preferences that may change as your disability does.

***

While schools across Canada are still debating what broad information about sex education is appropriate, and when to teach it, specific education about sexual health and disability isn’t even on their radar. For years after Kaleigh Trace, 30, sustained an incomplete spinal cord injury at age 9–which landed her in a wheelchair and affected her mobility, sensation, and bladder control–she received absolutely zero information about sex. “There wasn’t a lot of [sex ed], especially in rural Canada. I guess we had one day when we were brought to the gym [to learn]. But I didn’t attend gym classes,” says Trace, who’s now an educator at Halifax sex shop Venus Envy and author of Hot, Wet, and Shaking: How I Learned to Talk About Sex. Instead, she learned sex education from peers, books or Cosmo—and none of it related to having sex in positions conducive to a wheelchair. “A lot of sex books will say, your vagina will get wet or your clitoris will expand. But definitely lots of vaginas don’t get wet. My sensation is just different. The things some people say will feel good won’t necessarily feel good for me,” says Trace. “So I did what a lot of marginalized people do—I pretended I wasn’t different.”

By the time she was ready to be sexually active, Trace was no longer in a wheelchair. But she was using two canes to walk, and still had to contend with bladder and bowel issues. Thanks to her mother, who had always been open and positive about sex, Trace applied at Venus Envy when she was 22 and was hired. Around the same time, she began masturbating more and figuring out what worked for her body. “A little bit late to start figuring out how to have an orgasm, but whatever,” she jokes. While Venus Envy was fielding frequent requests for information about sex and disability, Trace was the only educator on staff who actually had one. So she began to teach herself (and eventually others) about men’s bodies, about how antidepressants can affect libido, about the ways in which people who live with cerebral palsy and other conditions can have sex—and eventually started a blog, The Fucking Facts, to address some of those questions. “Nova Scotia is a really poor province. There’s no funding here to look at sexuality, so it falls on the hands of whoever is comfortable talking about it,” she says. And although there’s more information out there now than when she started at Venus Envy eight years ago, she’s still longing for more pop culture portrayals of disabled people being sexy. “‘We’re always asking each other, who do you read? What do you watch? Where can I find stuff?’” The internet offers up some quality, positive porn featuring differently-abled stars—Lyric Seal, a disabled actor in a wheelchair, does porn for the site CrashPad, and Torontonian Loree Erickson also acts in porn that features her wheelchair, including her 2009 acclaimed film, Want. But these portrayals still exist on the fringes, and finding them is not easy.

***

Pop culture, from which we take so many of our sexual cues, has been sorely lacking when it comes to realistic depictions of sex and disability. In an episode of Sex and the City from 2000, Samantha has sex with a man with dwarfism (though not before callously asking her friends how short one must be to be considered “a little person”). Eight years ago, Friday Night Lights quarterback Jason Street has an affair with (and impregnates) a woman as he explores his post-accident life as a quadriplegic. More recently, Game of Thrones has featured characters with disabilities that range from a spinal cord injury to an amputated hand to dwarfism. And in the fashion world, Jillian Mercado, a model with muscular dystrophy who uses an electric wheelchair, has appeared in campaigns for Diesel and Beyoncé. “I think we’re making huge strides forward,” says Stella Palikarova, 36, an activist and academic who focuses on sex and disability. “People’s awareness levels are different now.”

Palikarova was born with a genetic predisposition for a neurological condition called spinal-muscular atrophy, which impedes development of motor neurons and affects her muscle strength. The condition was triggered when she was eight months old. Growing up, it meant driving a power wheelchair around her hometown of Dartmouth, N.S., and missing out on some of the quintessential partying and hookup experiences of high school. But she received thorough sex ed (her teacher offered the class a literal taste of spermicide, and they practised rolling condoms onto a wooden penis named Woody), and Palikarova grew up feeling like she had a lot to offer a potential partner. In grade 12, she met a man nine years older than she was through a family friend and the pair dated for around five months. There were challenges: Palikarova can’t lift or dress herself, and she was 4″11′ to her boyfriend’s 6″6′. But they’d had fun laughing together and going out on coffee dates, and she felt safe and comfortable with him. Soon, they were going their separate ways—she to university in Toronto, and he to a new job in Connecticut. The day before he moved, he invited her over to say goodbye. There were boxes strewn everywhere, and things quickly turned sexual. Still, it wasn’t perfect: “He was trying to carry me into his bedroom and bumped my head against a wall,” she says. “We were both really nervous. He had a really difficult time staying hard.” She thought it was her fault.

As her 20s went on, online dating became the most straightforward way to meet people, and Palikarova, who’d always felt like a pretty sexual person, was keen to broaden her experiences. She’s had some success on sites like Plenty of Fish and OKCupid, though there are still challenges. “You don’t want to come across as labelling yourself, like, Hi, I’m a 30-year-old woman with one leg. It defines you,” she says. “But then you don’t want to show up on a first date and put your date in an awkward position.” It can also be difficult to find accessible buildings in Toronto to accommodate her wheelchair, whether it’s a hot bar to meet for a drink or a date’s apartment building if things are going well.

Dating with a disability makes issues of trust and consent even more crucial, and Palikarova has encountered a few unsafe situations. “I had consented to have sex with one guy and I told him to put a condom on and he didn’t, and there was nothing I could do,” she says. He had unprotected sex with her anyway. “I didn’t say anything, he dressed me, put me back in my chair and left, and I never talked to him again.” Although she agrees that what happened was a sexual assault, she never reported it to the police. “I blamed myself to some extent. I mean, I’m a disabled woman who invited a guy over to her home that she had never met before, for sex. It wasn’t smart. It never is,” she says. She thought by expressing that she wanted to stop, the situation might get violent, so she didn’t. Now she tries not to think about it.

Access to surrogate workers willing to assist with these types of interactions could help prevent situations like the one Palikarova encountered, or at least make people with disabilities feel more confident in asking what they need from a partner and asserting themselves when necessary. In places like the Netherlands, people living with disabilities are able to claim the costs associated with hiring a sex worker as a medical expense as often as twelve times a year. In Australia, a charity called Touching Base connects sex workers to disabled people through a referral list of disability-friendly sex service providers. In some cases, the sex workers are hired to have sex with their clients. In others, they’re hired to help a client have sex with his or her partner. And in Vancouver, a company called Sensual Solutions employs intimacy coaches who will massage, caress or guide someone through a sexual experience for $225 an hour. But in Toronto, it’s much more difficult to find someone who will help facilitate a sexual experience between two people, particularly if you’re a heterosexual cis woman. As far as Palikarova knows, there’s no one in the city who includes sexual assistance as part of their personal support work, and she’s had difficulty finding caregivers who understand that healthy sexual activity is a right for all, not a privilege for the able-bodied. “When I hire caregivers, I definitely look for people who are comfortable with the fact that I’m sexually active or that I may have overnight guests sometimes,” she says. “I need help getting ready for a date, shaving, grooming, all the prepping that goes into that. What if I want to surprise my date with some sexy lingerie? They have to be okay with those kinds of things.”

So in 2015, Palikarova helped organize Deliciously Disabled, the country’s first disabled sex party. A care worker helped her put on a black bra stitched with multi-coloured Swarovski crystals. Her hair was curled, her big green eyes lined to precision. A lift was mounted to the ceiling of the venue in order to help get people out of their wheelchairs and into beds, and there were private rooms off to the side so participants could fool around or have sex, which some did. “People with disabilities so commonly don’t even have access to their own bodies,” Palikarova says. “You may not even be in a position where you’re able to pleasure yourself or masturbate. That’s a huge issue! It goes on the same list of human rights as being able to eat, or use the washroom. I don’t think you can segregate experiences of being human like that.” While plans for a second party last summer didn’t work out because of lagging ticket sales, Palikarova says she’d love to host another one if the opportunity arose. She also recently launched a new platform, Boundless in the City, to share her experience of living and dating with a disability.

***

In 2014, a British newspaper survey found that 94 percent of people haven’t had sex with a person with a physical disability. More shocking, though, was the 44 percent who said they wouldn’t, which can be a tough realization if you’ve acquired a disability as an adult and have to relearn how to navigate the dating scene. Zoe Vourantoni, who works as a sex therapist at Lucie Bruneau Rehabilitation Facility in Montreal and also runs a private practice, works with many such patients. She focuses less on demonstrating positions to clients who may be newly unfamiliar with their bodies (though there is some of that) and more about the psychology of having sex with someone if your body works differently or if you’ve sustained an injury. “Men will say, I have to watch my wife unload the groceries or shovel the driveway—I don’t feel like a man,” she says. “You have the intimidation of meeting new people, the grief you have losing the sexuality you once had.”

A large part of Vourantoni’s job is working with clients to restore some of the confidence they may have lost since an injury occurred—making them feel desirable again. “You’re looking for what you know and it’s not there,” she says. “The work is going to be a little bit more about the grief of having to take medications, that sexual function has changed, or having trouble with positions and moving around.” She also helps her clients with their communication styles, something many of her able-bodied clients need assistance with too. “One lady I worked with was young, really attractive and had a degenerative disease. After working with me, she got up the courage to go away on a girls’ weekend and got hit on at her hotel. She had a one-night stand and had to wear Depends before and after,” she says. “Her partner didn’t even blink an eye, he was fine with it. The idea is really to talk to your partner about what you’re worried about. You’re going to have some time between ‘hello’ and getting naked to address those fears.”

Vourantoni’s job also involves working to explore parts of the body that can feel unfamiliar after a devastating accident. Research shows, for example, that although people with spinal cord injuries lose feeling in some erogenous zones, brain plasticity can heighten sensitivities in other unexpected places—it’s just about finding them. “I work with one man who gets off when his partner scratches his face,” she says. “For him, since he has no feeling below his neck, during sexual activity that feeling really intensifies.” Nipples, ear lobes, and even the roots of hair are all areas that can take on similar erogenous qualities and help someone reach orgasm.

***

As Stephanie Dixon got older, her insecurity about her body intensified. She was gaining prominence in the swimming community, but she had severe sexual anxiety. “I was devastated. I was a 23-year-old not having sex, then a 24-year-old not having sex, then a 25-year-old not having sex,” she says. “Disability magnifies the doubts anyone has in their minds, not only internally but in society. You don’t see women with disabilities in lingerie commercials.” Her best friend from university was from Whitehorse, and after Dixon retired from swimming three years ago, she decided to take a trip to the Yukon, which turned into a permanent move. A year after that, her mother died and she sought the services of a grief counsellor. But it turned out she didn’t need help with grief, she needed help with sex. “I didn’t want to be a 40-year-old woman not having sex because she’s insecure about her body,” Dixon, now 33, says. “One day I just walked in and said, we need to talk about sex. It was the first time I’d ever talked about it to anyone.”

Initially, the counsellor encouraged Dixon to get comfortable with masturbating. And then, she told her that she should start having sex—a lot of sex. Dixon began to date a guy she knew through friends in town, and they had sex three times, the most consecutive coitus she’d ever had. “That he wanted to do it again after the first time, that felt like a victory for me.” Even tougher than sex itself was getting comfortable with someone going down on her, something that got easier with practice. “My ass is definitely distorted, and because of the emphasis placed on that in sexual culture, I’d even put on clothes before walking to the bathroom.” Being on top of someone? No problem. But having a partner look at her butt was the hardest part.

Over the last three years, Dixon dated a string of men who have helped her work through some of her remaining insecurities and have taken her on some outstanding dates—to walk the Great Wall of China, to look at northern glaciers in a helicopter, to catch lake trout in Atlin, B.C., to surf in Tofino. And, just in January, she got to see, finally, what it feels like to be on the other side of the security equation on a date with a man who hadn’t had a new sexual partner in more than a decade. “We got into bed and he froze. ‘I don’t think I can do this. I’m so afraid I’m going to disappoint you. I don’t know if I remember all the moves’, he told me. We did end up having sex, and it was great.” He has no disability, but insecurity is mental, not physical. “It came full circle,” she says. “I got to validate somebody else.”

Mixed Messages: Ableism in Dating

Article by Aimee Louw originally published on www.canadianwomen.org on March 20, 2017
Ableism can be defined as systemic discrimination based on disability. You know, those encounters you have that make you feel bad about your disability, or those barriers that prevent you from having your needs or desires met.
Ableism shows up everywhere. And for women or femmes or gender non-binary people, sometimes it’s hard to pinpoint whether it’s misogyny, ableism, or a gnarly combination.
So how does ableism enter the dating world?
“Ableism in dating is not overt, aggressive or necessarily oppressive. It is the things NOT SAID, the quiet questions, the missed opportunities born out of fear…” said Andrew Gurza, founder of the Disability After Dark podcast.
Often, the way that disability and accessibility are perceived can affect dating. Personally, I’ve learned that feminist crip rage isn’t understood or appreciated by all dates. (I mean, it is to me, but.) Dates who aren’t familiar with this area of advocacy and intimacy may find accessibility too demanding. It might seem like too much for people who don’t see ableism as a social problem.
Below are a few instances of ableism gathered from people in Quebec and Ontario, and some of my own experiences. These are excerpts from interviews and conversations I conducted during my time working for the Fédération du Québec pour le planning des naissances (FQPN), co-coordinating the ACSEXE+ project in 2015.
Often, when it comes to disability, there can be confusion about the way we move or communicate or perceive things, and also confusion as to what our body language is telling another person or how that other person should interact with us.
One anonymous respondent said:
“The most common experiences that I have gone through have been attached to the wheelchair and my speech disability and the connotations that others have when they’re not aware of my disability. Challenges are seen in the form of:
a) not being able to enter a popular bar or club that a date would have liked to spend a night out at;
b) the appearance of being drunk due to lack of coordination and slurred speech; or
c) the first time awkwardness linked to getting intimate.”
Meeting people can be a challenge for some disabled people for several reasons, including ableist assumptions about us. This anonymous interviewee talked about their experience with online dating:
“There are all kinds of reactions. Most of the time people feel sorry, and that hurts just as when someone stops replying because they got scared.”
Queer dating scenes don’t seem to be an exception to this. One queer respondent put it this way:
“I tried online dating a couple of times. I found it so stressful. Having to come out as disabled because it is not obvious online in my case. Having to perform the story: “Hey I’m disabled but it’s not that bad.” I can’t do it anymore. It makes me sick. Many friends tell me I should make more effort and date more often, but I just don’t feel like I have the energy for that right now.”
In my experience, there are very particular looks for “types” that we can use to identify or signal other queers to us. If, for reasons of body stuff or mobilizing or the way that we communicate, we don’t fit into those categories, or if we don’t want to, it can be a lot harder to meet people or even enter into queer dating scenes.
Some people said there was more ableism in the families of partners than with partners themselves. This anonymous accessibility activist said:
“Most of the people I was seeing were friends before, so… they already knew [about my disability]. The only ableist aspect with seeing friends is that they were more concerned with how their families would react to our relationship. It was like, ‘yeah, we could get serious, but it’s gonna get complicated with our families talking’. They were being honest, I guess.”
Another anonymous interviewee shared similar experiences:
“I’ve observed ableism from the family and friends of the individuals I have dated in past.”
A memorable moment for me: a family gathering of my boyfriend’s at the time. I was strongly encouraged to change his nephew’s diaper while being questioned by his mother about my potential as a child bearer. Here, my gender and her curiosity about my disability, and the expectation that I would be the future primary caregiver of desired grandchildren, combined to make for a particularly strange gathering around the changing table. Awkward!
And on staying in the wrong relationship our anonymous activist said:
“There are two main fears: 1) not being accepted and 2) being alone. I [have] stayed in relationships so that I wouldn’t be alone. But you’re hurting yourself, because it’s like a poison that seeps in the farther you go. You get to a point where you say, how did we get here? Wish we had dealt with this earlier…”
When it comes to women, femmes,girls and gender non-binary people, there are multiple layers of awkward or weird comments and unwelcome commentary. I can’t even count the times that I man has tried to get my attention or ask me out by first saying something like “oh what’s a pretty girl like you doing in that wheelchair?” Or the time I was out on a date with a man and he was confused and also endeared by the fact that I moved my body differently than him. There’s a specific kind of condescending questioning that this man – like others before him – felt in accessing information about my body. He felt completely entitled to ask me questions that were based on the assumption that I was abnormal and as such, needed to provide him with an explanation. All this on a first date!
As women and femmes we are under a lot of pressure to perform, be pretty, be sexy, fit images of femininity, say the right thing and when we have another differentiating factors such as a visible or invisible disability, there can be many constricted social requirements for us to comply with in order to feel accepted.
“People consider us as disabled people and not as disabled women” said Isabelle Boisvert during an interview, pointing out the common experience of being desexualised in a culture that equates women’s sexuality with a narrow image. I think disabled people across the board and across the gender spectrum receive this question a lot: ‘can you have sex?’
How many of my disabled, sick, Deaf sisters and siblings have encountered the condescending “let me help you with that”, as though we couldn’t possibly know what we need or how to navigate? Or had a date actually ignore a request for assistance in another way or in the way that actually would help?
This has definitely come up on more than one date with a man in my life: the chauvinistic and paternalistic “wow, you do so well, considering”, draws on a pervasive assumption that my disability prevents me from living my life. Inaccurate.
My advice? It can be really hard to distinguish between sexism, misogyny and ableism, but one thing is clear: If you’re feeling stigmatized or uncomfortable in dating, listen to your instincts. Ableism and other forms of discrimination often find obvious and subtle ways to enter into our dating lives.
For me, part of overthrowing ableism is dismantling misogyny and vice versa. They’re completely intertwined and harmful to people of all genders.
Feminist responses to ableism in dating include defending respect and sexual freedom for all disabled people. Accessibilizing is a process.
These acts of resistance can take many forms, including challenging ableist comments, resisting the urge to ask uninvited questions, ensuring a venue or show is accessible for your date, supporting disabled family members in their dating pursuits, negotiating consent with cards or a list, working for physical accessibility, learning sign language and more. If we join together, we can break down all kinds of barriers and go on some great dates.
Thank you so much to those respondents who shared their insights and experiences. It’s important to note that these respondents aren’t representative of their communities, however, as there is no universal experience of disability, there is also no universal design when it comes to accessible dating. There are certainly commonalities between stories, but each experience and story is particular to the teller.
If you have ways that you’ve experienced ableism in dating and want to share them for a future piece or just to vent, you can email Aimee at aimee@underwatercity.ca. You can also visit her website http://aimeelouw.com and her blog http://underwatercityproject.tumblr.com/ for more.

The Last Taboo

STORYLINE

These persons share their outlooks on affection, connection, friendships, relationships and, according to their experiences, they share what they’ve learned about themselves. Basically, the overall idea of the film is that… “In bed, everyone’s able.”

The maker of this film, Alexander Freeman, had never felt comfortable with his own sexuality. It was always that strange thing that he wanted so badly to explore, because in order for you to really understand yourself you have to be able to experience the touch of another person. One time a girl who was a friend of his gave him an experience that changed how he saw his own sexuality. It was the first time that he felt attractive. But he still had questions. He decided to find out why it is perceived to be the last taboo. He has cerebral palsy, which basically means that he doesn’t have total control over his muscles. But, everything still works down there.

The problem with the word “disability” is that it has a negative connotation from the get-go. It automatically implies that there’s something that somebody “can’t”, or something that somebody “isn’t”, and that becomes defining, foundational definition of the way somebody thinks of somebody and then it spills over everything including sexuality.

People will look at something and they’ll think it’s beautiful if it falls under certain guidelines and that is what puts so much stigma on the idea of someone with a disability being a sexual person, because people can’t quite connect the dots between the idea that someone has a non-normative body or presentation and the fact that they might be sexual.

The Last Taboo conveys a captivating and comforting story of six people with different physical disabilities and a fit partner who was in a relationship with one of them.

To the person going on a first date and wondering if/ how to share their illness/ disability with the lucky date

Original content post by our blogger Aimee Louw. Check all of her contributions.

 

I hope you have fun on your date! Personally, it depends if I trust the person and feel comfortable around them, whether I share info about my body. And it can happen little by little too. So first off, trust yourself:) Ask: do I feel like discussing this right now? WIll it make me more comfortable? I would add also, don’t feel obliged to share info that you don’t feel that comfortable to share either. Like if it comes up and you feel like you want to share something about your illness, that’s awesome! And at the same time, don’t feel like you have to answer all the questions your hot date might have. I’ve been on dates where the person asks, “oh, does that mean you can’t____? (fill in the blank)” and I don’t feel like divulging at that moment, or the question goes too far. Responding with “I’ll share more as time goes on,” or “it’s not too relevant to ___ this activity” or something along those lines can let the person know that you appreciate their interest/ question, and at the same time respecting your boundaries/ private info too.

And remember, you don’t have to think of it as bad news you’re delivering, you’re just sharing an aspect of your life with them. That is a big honour, if you think about it! <3

(I don’t consider my disability a bad thing at all.)

Lobster loving

Original content post by our blogger Aimee Louw. Check all of her contributions.

I’m sitting there eating a spinach salad in Boston Pizza with an older guy I had met in a grocery store parking lot. It’s a first date. We have nothing in common.

He, a displaced east coast fisherman looking for a good time, preferably to a soundtrack of 80s hair rock, me, an uncomfortable college music student looking for validation, experience, and excitement.

He’s eating heartily and telling me about lobster, flipping through one of those 1990’s-era drugstore photo albums. He’s describing the different types of lobster traps and lamenting that there is less and less work every year on the sea. I’m nodding and picking at my food, thinking he’ll find me more attractive if I eat less.

We make a strange pair, to be sure, but not for the reason he thinks.

We’re eating, he’s talking, I’m listening, and then the question comes. A question I have grown accustomed to, growing up with an atypical body, but a question that shocks and hurts all the same when I hear it:

“So, what’s your… your…” and he elaborates with hand motions, expecting me to fill in the rest.

“My…?”

“Your, you know…”

“Umm” I stall.

Silence, salad, shame, and images of lobster fill my being. Then he pipes up with,

“don’t worry, it doesn’t bother me, I have a niece who was born with… well… she needs help.”

“Oh.”

“Don’t worry, I think you’re beautiful anyway.”

It hurt to realize that while I was wondering if my date found me cute and if he would want to see me again, he was asking himself, basically, what my problem was. I felt uncomfortable but at the time didn’t know exactly why.

Time has passed and I have done a lot of soul-searching. My way of thinking about disability and the expectations placed on us has expanded. So here’s why I was uncomfortable:

There’s this often unspoken expectation that people with disabilities should a) explain ourselves when dating, and b) that we should know that we’re deficient and therefore be grateful for whatever attention we get.

Basically, we’re throwing non-disabled people’s perceptions of how a person should look and communicate off, and it is up to us to do what we can to fit their expectations. And if we can’t, we are expected to apologize for that in the form of explanations. On their terms.

In the moment, I felt uncomfortable because I wasn’t the person bringing up the topic of disability. He was. There’s power in asking about someone’s experience when that person is part of a minority. I did not mention or show that I would be open to discussing that very intimate part of myself. It didn’t even cross my mind until he brought it up. And at the time, I was just learning about what my disability meant for me, let alone anyone else.

It was our first date! He felt completely entitled to every bit of information about me, while disregarding my entitlement to personal privacy. He didn’t consider how his question would make me feel.

It’s hard as young women seeking love to stand up for ourselves when we put our feelings on the line. And while I joke about this obviously wrong fit of a date now, at the time I was smitten and did not write him off because he overextended his boundary.

The thing is, from where I sit now, I would slap that older man going out with a girl half his age and tell him that he should know better than knocking her confidence down just so that his affection or attention can bring it back up again.

From where I sit now, I would tell that younger version of myself that it is he who is making things awkward. I would insist on making him spell out his prejudice, his questioning the difference my body signifies by staying silent, saying with my eyes ‘you want to make this awkward? Let’s dance!’

I would tell her that spinach salad is delicious, but not enough for the solid appetite she had and I have still. That buying into the expectation for girls to not eat is not a good way to get a boyfriend. I would encourage her to eat with all the fervour and pleasure in her being! Because we should never deprive ourselves in the name of acceptance.

Most of all, I would tell her that she does not have to disclose anything that she doesn’t want to… ever! Not to dates, not to friends, not to bosses, nobody. And when she does want to share that side of herself she should accept nothing but respect and openness from the person on the opposite side of the table.

Disability after dark – Podcast

Listen to super cool podcast by Andrew Gurza!

From his webpage: 

ABOUT ANDREW

Andrew Gurza is a Disability Awareness Consultant who invites you to do “Disability with Drew”. In his work, he seeks to explore how the lived experience of disability feels, as it interplays with intersectional communities.  He shares his lived experiences of disability in a raw, vulnerable and unapologetic fashion.

He has presented all across North America on sex and disability as a Queer Crippled man. His written work has been highlighted in Out Magazine, The Advocate and Huffington Post.

He also hosts the Disability After Dark podcast, which shines a bright light on sex and disability.

ABOUT DISABILITY AFTER DARK

DisabilityAfterDark is a brand that looks specifically at disability through a sexual lens.  The brand will go deeper into the experience of sex and disability via a podcast, blogs and writings and a strong social media presence.   I chose DisabilityAfterDark because I wanted to play with the idea of taboo; people tend to assume that sex and disability is wrong, dark and scary, I wanted to explore that. DisabilityAfterDark also plays with the idea of mythology. So many people think that people with disabilities having sex lives and owning their sexualities, simply doesn’t exist.   DisabilityAfterDark hopes to shine a big, bright light on sex and disability, and go deeper into the topic than ever before.

Listen to the podcasts: