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.

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.”

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.

So an Aspie Has A Crush on You: A Guide on Guys with Asperger’s (Written by One)

Extract of an article originally published by Cole Wintringham, who has Asperger, on www.medium.com, on Feb. 4th 2017.

The Card or Don’t Touch

I am too old-fashioned when it comes to holidays. I insist to this day a handmade card beats a Hallmark card any day; someday I may read this back to my future wife, who will know exactly what I mean. I’d even make a paper box for the engagement ring if I could make it sentimental enough, provided I could physically do that.

It was not actually a Valentine’s Day Card, which is ironic in hindsight. It actually just said thank you for being a friend. The Card actually burned too many friendships to count, oh well. There is always a particular girl, I think it’s the way my brain works; I can’t figure out why. There was M., S., and T., I am actually sad there was no R. or Y., I could’ve spelled out M.S.R.Y.; note to self. T. was literally the last one, whether there is a girl right now is a stupid question. I need stability before that so no. I need some vowels too…

Back on topic, I gave T. this ‘Friendship Card’ on February 14th, 2016. She appreciated it, and made the single greatest mistake she could have made, she hugged me. Ladies, if you have a friend with Asperger’s do not hug him on Valentine’s Day. For an Aspie a hug may as well kiss, so don’t, unless you really mean it then go ahead, don’t say I never warned you. That is Rule One. ESPECIALLY if you have a boyfriend, or even worse haven’t bothered telling your Aspie friend you do.

Cole’s Aspie Rulebook:
Rule #1. Don’t hug us unless you’d kiss us; a handshake will suffice

I can’t remember which day I “traumatized” her, not that it matters now. T. and her boyfriend L. are long gone from the school which I returned to this September, on an absolute whim. However I have no hard feelings, they never had a chance to read something like this.

Please, Don’t Make Us Guess

As I hinted before, T. wasn’t necessarily portraying herself the way she thought. I’m sure light-hearted flirting is common but it’s not the best thing to do towards a guy like me. Let’s change context, say you take your six year-old to a wrestling match, he get’s worried because he thinks the guy is actually getting beaten to a pulp. Of course you tell him it’s “not real”, but how was he supposed to know that. Same thing here, I have a hard enough time reading body language, let alone judging intent.

As an extension of this don’t leave us out of the loop if you think you might hurt us by telling us the truth. As hard as it is we function better when we know what is what. Because I don’t process things the way you do I need to pre-load them. It’s kind of like how you download music to your phone if you want to play it the car. T., bless her heart, thought I’d be devastated if she told me she was with L.; looking back a year later, I appreciate the thought. However it was more harmful to hide it than to be open, because of the pre-loading.

You don’t tell somebody with asperger’s at 11:23 am that they have a noon appointment. WE PANIC. Well now I have to get dressed, but I haven’t showered, did I brush my teeth etc. Telling us the truth, ladies, is like deploying airbags. Airbags don’t actually reduce the force of a collision they dampen and absorb the kinetic energy. Sure airbags hurt as hell, but I’d rather break my nose on an airbag than smash my face on a dashboard. Rules Two and Three.

Cole’s Aspie Rulebook:
Rule #2. Don’t leave us to judge body language, we can’t
Rule #3. Be honest, if we know something we can deal with it

If You Have Concerns, Tell Us

Let’s go back to the dictionary and look at a particular passage:

repetitive patterns of behaviour

This would have helped T. tremondously had she known it was simply a symptom. She became concerned about the frequency I would message her on Facebook; and to be fair she was right. However what she did wrong was, again, failing to tell me for fear of upsetting me. If she had told me I would have listened to her, adjusted my habits accordingly. This is a recurring thing with Aspie’s, we will never know unless you tell us.

This is where we get to learning, somebody like me can never learn without feedback. Imagine a you are proofreading a novel, you note all the mistakes but you don’t tell the author. That doesn’t exactly work, does it? An author sometimes doesn’t even know he made a mistake. An Aspie doesn’t know when we make a mistake, we don’t know how you expect us to behave.

As a friend it is not mean to “correct” our behaviour, we won’t be mad. You’re actually helping us, we learn through trial and error because we don’t have the same social instincts a normal person has. Rule 4.

Cole’s Aspie Rulebook:
Rule #4. If we behave unexpectedly, tell us, we need feedback

Compliments & Boundaries

Our last section today is more verbal communications. Those of us with Asperger’s take things literally. I remember countless times when T. and even S. called me “sweet”. It is because I am nice, but I read too far into it. Yes I am telling you to friendzone him, but for a specific reason. Define the field of play, tell us where we can and cannot go. We are very, very good with black and white rules, but if it’s grey you may as well drop us in a forest with no compass.

Compliments must be specific, don’t just say we are “sweet”, how are we “sweet”. Don’t leave it implied, we do not understand that. What would I have had T. say, instead of “Cole, you are sweet” it should have been “Cole, I appreciate how thoughtful you are”. That way I could sort it into the “Platonic Friendship” bin. Our brain is like a library with a dyslexic librarian, you don’t want us sorting the books. Rule 5.

Boundaries or rules are essential, because that is how we view the world. If you watch you friend walk outside I guarantee you he stays on the sidewalk and avoids cracks, as we are told as toddlers. So tell us what you expect. Again using T. as an example what would have helped me? For example “Cole, if I don’t respond you don’t need to send another message” or “Cole if I can’t make lunch it is because something came up”. Rule 6.

Cole’s Aspie Rulebook:
Rule #5. Be specific with compliments, so we know what you mean
Rule #6. Lay out boundaries, if you define them we will follow them

Josée wants to discuss about ACSEXE+!

Our project manager, Josée, wrote her first blog post:

Last month, I was lucky enough to became project manager for ACSEXE. I spent the last month familiarizing myself with what has been done…a month to read, discuss, think … without succeeding in completely deciding on what to do so that ACSEXE shines more and is even more interesting for those interested by the project.

The project is important to me personally. I think of the teenage little Josée, who saw her friends having their first sexual experiences, and wondering if she would be able to have “normal” sex with her stiff legs and body. I think back to my early 20s, when I was on dating sites, with an invisible handicap in my pictures, tooking hours to think about when and how and why to tell about my difference before dating. I think of the Josée in her mid-twenties (and that’s not so long ago), who, after a sex life with the same partner for years, wondered how to communicate her differences and abilities with more ephemeral partners. And even more recently, the big Josée, who was wondering last week where to find, these partners open to a love story with a “different” person?

I feel like sharing all of this with you. But that’s my reality. And yours is different. You certainly have questions, solutions, things to say, ideas for the project …

ACSEXE, it’s not just me, it’s us.

You want to participate in the project and share your ideas, exchange, collaborate on this blog … I want to hear from you! Write me at jrochon@fqpn.qc.ca.

Josée

///ACSEXE+///Caroline///

(Instrumental music with talks in English)
(Music and chalk noises)

I’m a trans woman. I’m… I  identify as asexual, but, not like aromantic. Because I like… I like to have special relationships. And umm, I’m on the autism spectrum, lots of weird anxiety things, I have experienced lots of things, relationships… maybe also sexuality, all these things, which is… particular and I think there are lots of things that combine as part of my experience that are unique and that I’d like to share.

I know that often, when I see other people’s experiences it’s rare that there’s something that I find represents me well. And I think that we need more special cases of weird people.

(Instrumental music)

Internalized Ableism

One barrier is that, in general, we have expectations about how people behave and how they use… move, interact, we have expectations about these and these expectations aren’t necessary… it’s not everybody who can… fulfill respond to these expectations. And so just living, in general, in the world, with these people, and trying to do in that world, it’s something that burns up my energy, because I always have to conform to these behavioral standards.

For a long part of my life I tried just to… not exist and to take up as little space as possible, and to make as few movements as possible because, it was safer. Now, I try to take up more space and to take that space in my own way. There’s a bit of… when I try to state my needs, especially when it’s something really specific in a particular moment, often it’s difficult for me because I find my needs illegitimate, and that it’s just too complicated. So there’s lots of internalized ableism.

When I try to explain to my girlfriend, certain of these needs that I could have, it can relate a lot to internalized ableism, so that could be hard. Difficult for me, but also difficult in terms of education because when I’m becoming really anxious because I find that I’m asking for illegitimate things that are just complicated and that I try to ——, that doesn’t put me in a good position to education people because I have the impression that I’m bad. So…

Generally, in my experience, the moments that autism or anxiety become visible are when I’m really not doing well. So, stating my needs in advance, that could be really positive. It’s also really important in terms of consent. But when that comes up in the moment, when I feel bad I can’t give advice to someone on how to interact with me. I have to say: “Ok, that, that works generally, but if I do this, ‘stop’.”

(Instrumental music)

(a)sexuality and disability

 For me, what’s important is relationships. And everything that can be more sexual, related to sex, bodies generally, in my experience that’s more linked to the fact that I’m trans and everything related to my body follows from that. I think that my sexuality and my asexuality could be understood in relation to my trans experience. But again, I don’t that think that we can just link it to my disability, and I don’t think that we can just link it to… to my trans experience. What I’d like people to understand about asexuality, like umm… is that… okay, I’ll say three things.

One: It’s an experience that it’s completely as legitimate as all the other forms of sexuality or other forms of relationships, also, or desire of relationship. Because, me, I want to be in relationships. There are people who don’t want that, and that’s super legitimate too. So that, that would be the first thing.

The second thing is that… to be in a couple and make love, that doesn’t necessarily have to go together. I think one thing that we try to valorize in sex-positive discourses is that we can move beyond. Marriage is not necessarily exclusive, like it was the 1960’s. We can have something more diversified, but we can also not have the need for that in a couple.

And I think that the third thing I would say is to not forget that… even if there isn’t… you know… to my knowledge, there isn’t systemic violence against asexual people, that doesn’t mean that the group doesn’t live forms of “oppression”, or experience marginalization in certain communities, and are easily forgotten. And that we have our place in, you know the long acronym of LGBTQIA, and that the A is not for allies. That asexual people have their place in communities and movements around sexual diversity, and diversity in general. Because it’s not true that we’re that well integrated in many spaces. For example, we’re poorly integrated in lots of spaces that call themselves queer.

Often, the things we say against asexual people to de-legitimize their experiences, are the same things that people used to say against homosexual or bisexual people, against trans people, against intersex people, so it’s not necessarily the same thing, but the same type of attitude and discourse and the same schema.

I think that we have to understand sex-positivity as not necessarily more sex, but like, more diversity and more openness to different experiences. That could be more openness like less traditional ways to approach that, to not want to make love because it’s not something that I understand and it’s not something that I find important.

(Music )

These video have been produced by FQPN and realised by Rozen Potin. Responsible for the project: Charli Lessard and Aimee Louw. With the participation of Isabelle, Caroline and Hodan. Translation: Aimee Louw

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