Article by Wallis Snowdon published on March 7th, 2017, on CBC Edmonton website.
‘They just see the disability, and that’s not who I am. I’m a whole woman. I’m a whole person’
Michelle Bissell had heard it before, even from complete strangers.
“People with disabilities should not have sex.”
The Edmonton woman, who has cerebral palsy, is hoping a new University of Alberta training program for medical professionals will help empower people with disabilities to learn more about their sexual health, and ease some of the stigma that persists in society.
“It’s just awful, because obviously they don’t see me as a whole person. They just see the disability, and that’s not who I am. I’m a whole woman. I’m a whole person,” said Bissell, a longtime advocate for disability awareness.
“In a lot of respects, the medical field glazes over that part, because people with disabilities aren’t thought of in society as a sexual beings.”
‘It is a taboo subject’
The Online Certificate in Sexual Health program was recently launched by the U of A’s faculty of rehabilitation medicine. The course, led by sexual health expert Shaniff Esmail, is intended to train more health-care professionals about the relationship between sexual health and disability, and how to approach it with respect.
Sexual health is a topic everyone struggles with, said Esmail, adding that most doctors feel ill-prepared for these sensitive conversations with their patients.
“The biggest barrier is that sex isn’t talked about. There are very few programs and unfortunately it is a taboo subject,” said Esmail, a professor and associate chair in the U of A’s department of occupational therapy. “I was surprised when I started doing some research that there is very little to no programming for people with disabilities.”
The post-graduate certificate program is the only one of its kind currently in Canada.
The demand for the program was so high that a second round of students was admitted in January 2017, the university said in a statement. Currently, 20 students are making their way through the program.
‘It can be scary’
Statistics Canada reported in 2012 that almost 14 per cent of the Canadian population aged 15 or older reported having a disability that limited their everyday activities.
Up to 3.8 million Canadians, if not more, are experiencing sexual health issues, and the demand for better training in the medical community only continues to grow, said Esmail.
However, the sexual health of patients with physical and cognitive limitations is often ignored by those charged with their care and recovery.
“People with disabilities tend to be systematically asexualized,” Esmail said. “They don’t get the opportunities or resources to actually learn about sexuality.
“Whether it’s their parents, teachers, or significant others, sexuality is something that people with disabilities have been isolated from.”
Bissell, who will be lecturing regularly in the new program, wants to ensure others don’t feel the isolation and fear she has experienced.
“I was born with CP so I’ve always been like this, but someone who has been injured who can no longer make love, that can be a lot,” Bissell said.
“People are released from the hospital and they don’t know how to handle things. It can be scary, especially if someone was in an accident mid-life. They need to have those conversations.”
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more athttp://ted.com/tedx
She wears designer dresses, dons Louboutins, and dates men all over New York City, documenting her life every step of the way. What starts out as a story analogous to that of a Sex & the City character quickly elevates in its complexity – what would have happened if Carrie Bradshaw had been in a wheelchair? In this TEDx Dr. Danielle Sheypuk gets real about sex and disability, unabashedly exploring sexual satisfaction writ large. She encourages curiosity and invites you to shed your preconceived notions of sexual norms in favor of a new reality that just might pique your interest.
Wheelchair-dependent since childhood, psychologist Dr. Danielle Sheypuk once described her NYC dating and relationship experiences as “Sex and the City, disability style.” After snagging the title “Ms. Wheelchair NY 2012,” Sheypuk found herself in demand from a variety of media focused on her particular area of expertise – the psychology of dating, relationships and sexuality among the disabled community. Her “walk” down the runway as a model during the February 2014 New York Fashion Week has been deemed by some as a “Rosa Parks moment” on behalf of women living with disabilities.
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.
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
This video and this article were originally published on www.cnn.com on Feb. 24th 2017.
- Nico Morales and Latoya Jolly met online in December 2015
- They found each other using a dating website for people on the autism spectrum
- Most high-functioning people with autism want to be in a romantic relationship, one study found
Like many couples, Nico Morales and Latoya Jolly met online. Nico sent the first message while on vacation in Guatemala with his family in December 2015. Latoya’s handle was pokejolly1993, a throwback to Pokemon and her birth year. Nico liked that they were both “children at heart.” Soon after, the couple went on their first date.
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 email@example.com.
Sexuality and Disability: Forging Identity in a World that Leaves You Out
In this TED Talk video, Gaelynn Lea talks about how she felt left out of mainstream dating and beauty culture due to her physical disability. She recounts the epiphany that empowered her to pursue life, love, and a musical career on her own terms.
This article by Anna Breslaw was originally published on www.cosmopolitain.com on June 27th 2014.
Rachelle Friedman, author of The Promise: A Tragic Accident, a Paralyzed Bride, and the Power of Love, Loyalty, and Friendship, dispels misconceptions about the sex lives of disabled people and speaks frankly about her own.
It was the summer of 2010 and I was having a bachelorette party. I had been engaged for a year, and it was four weeks from my wedding. I’d met Chris in college; he was my first boyfriend. We got engaged right after graduation. We were staying at a friend’s house who lived in Virginia Beach. At night, my friends got me a limo like I had always wanted, and we went dancing. By 1 or 1:30 a.m., I was kinda over it, and wanted to chill by the pool. So we went home, I ran upstairs to put my suit on, and stood at the side of the pool. It was chilly, so I was hesitating, and my friend playfully came up behind me and pushed me into the pool. I went headfirst. Thank god I protected my head with my hands, but I went in at bad angle and broke my neck.
I immediately knew it was serious, even as I was on the side of the pool with the paramedics. People say it was shock but I knew how bad it was. Chris was camping with his dad three and a half hours away so when the accident happened we couldn’t get in touch with him at first; he didn’t know until the morning. I can’t imagine getting that phone call. He was scared and sad about what happened, mostly. I was in the ICU for 10 days and then I went to rehab for about 2 ½ months. I’m a C-6 quadriplegic.
Chris was by my side the whole time, no matter what. It wasn’t even a question. People are like, “It’s amazing that he stayed with you!” It’s like people think someone with a disability isn’t as deserving as someone who is able-bodied. As if he’s giving me a favor. That is so sad for them, because it goes to show that they have no idea what true love is.
Before the accident, we were very sexual as a couple. We click sexually very well. We had sex more than the average couple. He was actually my first; I lost my virginity to him in college. We just connected so perfectly — sex was something that always brought us closer together, and it was scary to think what our lives would be like sexually [after the accident]. The doctors don’t really talk about that stuff — you don’t know until you get into rehab. And even there, they don’t say anything unless you ask, which I did. Learning how to have sex all over again, in my opinion, is vital to the rehab process. I had a very awesome, open nurse who worked at the hospital I was at, and neither of us had any problems talking about sex. There was also a female quad who worked there who was 40 and who got hurt in her 20s, and she was very sexual and open, and I asked her a lot of questions.
[Chris and I] had sex for the first time after the accident when two months had passed, and it was kind of like losing my virginity again. We talked about it, we knew we would still be intimate, and we knew I wouldn’t be able to crawl around on the bed and climb on top of him — but from the sex ed that I sought out since I was openly talking to people [at rehab], there were plenty of positions I could do. I actually had sex for the first time in rehab, because they have a special room, like an apartment, that people go into by themselves, and it’s kind of like being at home again. The nurses only come when you ask them for help for something, because it’s hard to transition from a hospital bed to normal life again. So we had an apartment for the night and we decided to try to have sex.
It was different than it used to be, first of all, because I don’t exactly feel sexy. Before I got hurt, I was an aerobics instructor and I got myself as fit as I could. I was a girl. I wanted to look sexy. Now I couldn’t even shave my legs by myself, I was pale, and I had a neck brace on in the middle of summer. So it was hard to be in the moment, but at the same time, it was a revelation! It was awesome. I was like, “I’m gonna go home and take care of myself like I used to, and I wont always have this neck brace.”
Now: Do I hardcore climax? I haven’t gotten there yet. But I get to a very intense state of pleasure. And sometimes, other quads figure out how to get that, after years and years. But one positive difference, I would say, is that before the accident, it was always about having the orgasm. My mind really did kind of get set on getting there, and sometimes, looking back, I wasn’t always in the moment. And now I am. At this point, it’s about feeling all those pleasure zones as they happen, and not just waiting for the big climax.
Obviously, I want people to understand the truth. I’m not gonna say it’s so much better — I miss orgasms. It’s natural to want to have an orgasm. I’m never going to lie about it. But as far as positions go, it’s much easier to do missionary obviously with my legs — you’d hold them back, but what I do is kind of wrap my arms around my legs to make it easier. I can do it from the side, like being embraced, or on my stomach.
One reason I’m very upfront and overshare about this is because it’s such a misconception that people in wheelchairs can’t have sex or be sexy — and they’re just lying there, so how can that be sexy? But there’s a lot I can still do in the bedroom, and I still think our sex life is better than the average married couple’s.
The Fédération du Québec pour le planning des naissances (FQPN) announce the appointment of Josée Rochon as project manager for ACSEXE+.
Josée worked 6 years in the disability community, for AlterGo. She has cerebral palsy. For the ACSEXE + project, she will be in charge of proposing the orientation with the help of partners, as well as to set those up, and you will be able to read her texts on this blog!
Welcome in the team!
If you have any questions, suggestions or comments, Josée can be reached at firstname.lastname@example.org.