Specialized clinic provides care for pregnant women with disabilities

Article By and originaly published on Global News on May 14, 2017.

Video: A first of its kind clinic in North America is caring for women who have physical disabilities and hope to become mothers. As Allison Vuchnich reports, the Toronto clinic is also breaking down barriers.

Article:

At just one day old, baby Abbas is already a symbol of hope. He’s the first baby born with the help of North America’s first clinic designed to provide specialized pregnancy care to women with a variety of physical disabilities. It opened this week.

With this newest addition to her family, Dalia Abd Almajed is now a proud mother of two — but there was a time she worried if she could have a healthy pregnancy at all.

“I was so afraid when I first knew that I was pregnant with the first baby, because [I use a] wheelchair with all these complications and problems,” Abd Almajed said.

Just four years ago in 2013, Abd Almajed was rushed to hospital after suddenly losing mobility in both legs. She stopped breathing and was unconscious for three days.

When she awoke, doctors diagnosed her with transverse myelitis, a rare disease affecting her spinal cord.

When Abd Almajed learned she was pregnant in 2014, she knew everything — from getting ultrasounds to finding a hospital with accessible beds — would be a challenge. As it happens, she had firsthand insight into the process, as she was trained as a doctor in Iraq, specializing in obstetrics.

Dalia Abd Almajed gets an ultrasound at Sunnybrook’s Accessible Care Pregnancy Clinic in Toronto.

For women with disabilities, pregnancy can be daunting. Many are discouraged from having children. In some cases, doctors have even told women to terminate their pregnancies over concerns it would be too risky or complicated.

Dr. Anne Berndl at Toronto’s Sunnybrook Health Sciences Centre refused to accept these limits.

“To be told that motherhood is not for you, this is not possible for you…this is not an attitude we should have as a society,” Dr. Berndl told Global News.

As a maternal fetal medicine specialist, Berndl cared for women with high-risk pregnancies, including some women with physical disabilities.

The struggles and stigma faced by these women struck a chord with Berndl, and together with the team at Sunnybrook, this week Berndl launched the Accessible Care Pregnancy Clinic for women with a variety of both invisible and visible physical disabilities. It’s the first of its kind in North America.

Berndl wants all women to feel well cared for, and is in the process of developing a new standard of care for women with disabilities.

“We’re trying to provide education so that we can provide a shift in attitude to create a positive environment for women with disabilities,” she said.

Dalia Abd Almajed  is one of many mothers benefiting from the Accessible Care Pregnancy Clinic at Sunnybrook.

According to Sunnybrook, women seeking care at the clinic may have a variety of disabilities, including spinal cord injuries, severe arthritis, spina bifida, cerebral palsy, multiple sclerosis, chronic pain, muscular dystrophy, scoliosis or have a history of trauma such as a car accident.

Examination rooms and birthing units are wheelchair-accessible with special scales and chairs designed for patients with limited mobility.

Women with disabilities often require more complicated care because of underlying medical conditions, but Dr. Berndl said the majority can still have a healthy pregnancy.

By coordinating with all specialists involved, from the obstetrician to the dietitian, the clinic streamlines checkups and makes appointments much easier for women with limited mobility.

For Abd Almajed, Dr. Berndl helped her through her first pregnancy, and now the newly launched Accessible Care Pregnancy Clinic made all the difference in the healthy delivery of her new baby boy.

“Before, I didn’t think that I can do it — but I did, so I hope everyone will have [a] baby like me,” she said.

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.

Sexual health for people with disabilities focus of new training program

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.”

 

 

Every body: glamour, dateability, sexuality & disability | Dr. Danielle Sheypuk

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.

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

Couple with Asperger’s syndrome: ‘We’re even more extraordinary together’

This video and this article were originally published on www.cnn.com on Feb. 24th 2017.

Story highlights

  • 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.

Now, family and friends say, it’s hard to keep them apart.
Morales and Jolly found each other using a lesser-known dating website called AutisticDating.net. Both Morales, 19, and Jolly, 23, have Asperger’s syndrome, a high-functioning form of autism characterized by average, or above average, intelligence and a difficulty socializing and communicating with others. Depending upon the severity of these social deficits, people with Asperger’s and other forms of autism may struggle to develop, maintain and understand relationships, including romantic ones.
“Social awkwardness is very common amongst autistic people,” Morales said. “And if you thought that was difficult for friendships, imagine applying that to romantic relationships.”
An estimated one in 68 children in the US has some form of autism spectrum disorder, according to a 2012 study conducted by the Centers for Disease Control and Prevention. Children can fall anywhere along the spectrum, which represents varying degrees of difficulty with social interaction, communication and repetitive behaviors. Researchers do not fully understand what causes these neurodevelopmental disorders, and there is no pharmaceutical treatment or cure.
Most high-functioning people with autism want to be in a romantic relationship, according to a 2016 study in the Journal of Clinical Psychology. Of the 229 participants with high-functioning autism, 73% said they had been in a romantic relationship before, and only 7% said they had no interest in a romantic relationship whatsoever. Additionally, the participants with partners who were also on the autism spectrum reported a significantly higher level of satisfaction with their relationship than those whose partners were not on the spectrum.
One of the primary characteristics of autism is a fixation on particular hobbies or pastimes — what the American Academy of Pediatrics calls “restrictive and repetitive interests and activities.” When two individuals with autism are in a relationship, they can relate to one another based on those interests, said Paige M. Siper, chief psychologist at the Seaver Autism Center for Research and Treatment.
“They can kind of connect on that common ground,” she said. “And sometimes, it’s around these areas of preoccupation.”
Jolly attends Atlantic Technical College in Coconut Creek, FL. Jolly says she is often uncomfortable when she talks to people who are not autistic. They may not understand the nature of her condition — why she may avoid eye contact during a conversation, for example. But with Morales, she doesn’t have that issue.
“It’s easy to talk to him,” she said. “I can understand, like, what he goes through and stuff. Because I went through the same thing, too.”
Morales, who attends Broward College in Fort Lauderdale, FL, says Jolly helps him deal with the emotional ups and downs common to individuals with autism.
“I honestly don’t know what I did to deserve such an amazing woman like Latoya in my life,” he said. “But who am I to question a good thing?”

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

Gaelynn Lea talks about sexuality and love as a disabled woman in a TED talk

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.