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.

 

How I Have Sex as a Quadriplegic

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.”

I’m still trying to figure out the deal with orgasms. Basically, it’s hard to explain this, but some people have complete feeling down there when they have sex. I’m not one of them. I don’t feel below my chest, but when I’m having sex I can tell when he’s inside me — because my blood pressure raises a little bit, and your body changes in a lot of little ways. The vagus nerve is responsible for the pleasure signals from sex and it totally bypasses your spinal cord and goes straight to your brain. So that’s why I’m kind of able to tell when I’m having sex and still feel aroused. You get endorphins, you feel the same signals in your brain pleasure-wise, I get the messages. And most girls like to be kissed on their neck, but now it’s an ultra sensitive spot for me. It’s very intense.

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.

Novelty for ACSEXE+

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 jrochon@fqpn.qc.ca.

The love story that wasn’t

This article by Nidhi Goyal was originally published on http://blog.sexualityanddisability.org on February 14th 2017.

I didn’t know that the simple act of cutting a cake for a New Year’s eve party would spark off a new chapter in my life, one that I would hate, love, enjoy, and later cherish. The party was at the house of a college friend of mine, and the cake had been brought by one of her colleagues.

When he realised that I couldn’t see, he started reading out the text on the cake. Some of his friends sniggered, and I sensed his anger at their implicit rudeness about my sight. He shut them up, and our conversations began.

This was nearly a decade ago, and yet it stands out as if it were yesterday. Within a month of meeting up with common friends, and over some cups of hot chocolate, he hinted at, explained and reiterated his attraction – or was it love? – for me. He found me brilliant, intelligent, beautiful, and loving; basically, he felt for me everything that a woman wants her partner to feel for her.

The first time he asked me out was over the phone at 1 am during one of our long conversations. I communicated my first refusal to him through silence. I just didn’t feel like there was enough chemistry between us. So we never dated or became lovers, but he was a friend who coloured my life with experiences that I still remember.

Some of my friends couldn’t understand why I wouldn’t give in to his attraction. After all, this was the first time in my life that a man had ever said that he was interested in me. They just didn’t get why I did not want to be with a so-called perfectly healthy, ‘normal’ man. Their reactions made me feel upset and confused.

I didn’t like talking to him in that way, nor did I feel any desire when I was with him. No matter how much he cared for me, the comfort of his friendship was not the same comfort I wanted from a partner. I didn’t confide in him or seek his support like I would a partner’s.

But wasn’t it better for me to compromise when someone was ready to ‘accept’ me? As a blind girl, did I really have a choice? Would anyone else ever like me again? These were the assumptions – both said and unsaid – that surrounded me. No matter what people said or implied, I guess my strong heart knew the answers.

I assume my refusal hurt him, but either he remained hopeful, or he just didn’t let it colour our friendship. He was happy to hang out with me, he argued with me as an equal, and he was my partner in crime when we sneaked out at midnight for pav bhaji. He didn’t treat me any differently when he discussed his work problems with me, he didn’t treat me any differently when he discussed his spiritual beliefs with me, and he certainly didn’t treat me any differently when I talked to him about my ambitions and plans for the future.

He was a natural at adapting to my disability; he never made it seem like it was a big deal. Once, when we were at a discotheque with friends, I was dancing with complete abandon. I am usually pretty much alone in the middle of the noisy space of a disco despite being with friends, since the visual coordination of steps isn’t possible. But I have a great set of friends who involve me in common dance steps through touch, and that night, so did he. But he also did something that the others had not picked up on – he squeezed my hand every ten minutes or so. I would say this is another way to make eye contact, simply to say ‘I am here.’

He was older, non-disabled, and had an MBA. He was working with an MNC while I was a struggling postgrad student, but he didn’t patronise or infantilise me – not that I would have let him. He liked to spend time with me, and to do different things with me, as he’d do with any other ‘normal’ friend.

One day, he said that he was tired of driving me around, and that it was my turn to drive. I thought he was joking until he pulled me out of my seat and pushed me onto the driver’s seat. Did he seriously want me to take charge of his car – his first love? Before I knew it, he was giving me instructions on the mechanics of driving, and I was following them. The experience of driving without sight, albeit on an empty and straight road, was exhilarating. I screamed with excitement and fear all the way through.

Our friendship grew and matured with time. Perhaps his love for me became intense. But as the days passed, contrary to what he’d assumed, it was clear that I didn’t want him as a partner. Something of his persistence must have shown at his home, because his mother was furious about our growing friendship.

He shared her displeasure with me, and instead of feeling hurt or uncomfortable, I was smiling with joy. This might have been cheesy of me, but this was the first ever time that the mother of a man thought that her son could fall for me, instead of just assuming that I was the angelic, genderless and harmless disabled best friend.

By then, his family had decided it was time for him to choose a life partner. Despite my refusal, he named me as the woman he wanted to be with. What followed was perhaps expected, and yet so painful that even though I didn’t love him, I was hurt. It hurt that his parents dismissed me because of my disability, even though they liked me, and I was otherwise whatever they wanted their daughter-in-law to be. But as far as they were concerned, the idea of him marrying me was absolutely out of the question because I was disabled. They didn’t want their son to be shackled with permanent caregiving responsibilities, because they assumed that I’d be a burden.

Their refusal didn’t matter, because I’d refused too, but what still shattered me as a 24-year-old woman were the reasons they gave for doing so. I had always been aware of the stigma surrounding marriage and disability, but this time it was my reality, and this reality was clawing at my skin.

Perhaps what hurt the most was that he didn’t persist in his efforts to be with me. He persisted when I said no, but not when his parents made unfair assumptions about me. This made me wonder just how equally he really treated me in the end.

Seven years have passed since this incident, and we are still in touch. Over cups of hot chocolate, we still remember those days, sometimes with fondness, and sometimes with discomfort. But we both know now that we would never have made sense together. My initial assessment of my feelings was right, and thank god I wasn’t consumed by any pressure to be with him.

As for him, after seeing me grow up into the stronger woman that I am today, he is sure that we wouldn’t have been compatible with each other. But it is hard for me to forget my first lesson in rejection, not because the man in question didn’t like me, but because assumptions about my disability superseded everything else.

We Need to Talk about Disability as a Reproductive Justice Issue

This article by Katie O’Connell was originally published on www.reproaction.org on august 24th 2016.

At first blush, I don’t appear to be disabled. Unless you notice subtle symptoms – like when I press on my sinuses, hold a hot mug or cold glass to my eyes, or am unable to find words when speaking — you might never know. But like 25.3 million other Americans, I suffer from a chronic pain condition. Between three and seven times a week I suffer from a migraine. Every day my neck and shoulders twinge with pain. Some weeks my nausea is so bad that I’m lucky to keep a glass of water down. When a migraine strikes, I often lose vision in one or both eyes. I’m fortunate enough now to work from home, but when I was in an office with fluorescent lights bearing down on me, bouncing off the bright white walls, I would leave work a few times a month with a blinding migraine. I would take the Metro home, usually getting off a few stops early because the swaying of the train made me so nauseous I was going to vomit.

Every morning I take four pills, and every night I take an additional three. If it’s a migraine day, and at least 15 days of the month are, I drink a licorice-flavor powder or take the only pill that has ever worked to stop the migraine. Without insurance, some of these pills cost thousands of dollars. Every three months I go to my neurologist’s office and get prescription Botox injections in my shoulders, neck, head, and face to alleviate the migraines. The day after my eyebrows make me look like Spock, and I have bloody pin pricks all over my forehead. My disability is not always visible, but it is debilitating, and it controls so much of my life.

Folks in the mainstream reproductive rights movement do not talk about disability enough. Some of this is because they do not know how to talk about disability — the pro-life movement has successfully seized control of this conversation, a conversation where pro-choice activists should excel. The reproductive rights framework centers autonomy and self-determination, concepts which are very familiar to those in disability rights activism. Instead, a pro-life movement of misogynists, racists, and sometimes violent terrorists, have historically made more concerted efforts to include people who are disabled, their communities, and concerns in their public messaging. Fetal disability narratives are central to pro-life rhetoric, where they decry abortions of fetuses with disabilities as a form of eugenics. Reproductive justice advocates have done a far better job than mainstream ones in including a disability rights framework into the broader movement, but it is still lacking. People with disabilities are routinely excluded from activist spaces — whether that’s because locations are inaccessible, actions lack online components, or hashtags like “#StandwithPP” are used (after all, not everyone who supports Planned Parenthood can stand).

I think there is a certain discomfort with engaging the pro-life movement on their appropriation of a disability-rights framework. No one in reproductive justice wants to advocate for a position that has been accused as eugenicist, an untrue label the pro-life movement loves to slap on people who advocate for abortion rights. They trot out the numbers of women who abort fetuses with Down Syndrome diagnoses. They frame these statistics as proof of eugenics, proof that the abortion rights movement is immoral and harmful. They manipulate them to claim that pro-choice people don’t care about people with disabilities. They frequently frame disability in terms of children and fetuses to avoid drawing attention to their lack of support for programs for adults with disabilities. This is one way they try to win their single-minded battle to make abortion inaccessible.

But what they don’t talk about is the infrastructure, of their own creation, that contributes to people aborting fetuses with disabilities. Like most women who have abortions, women who choose to abort fetuses with Down Syndrome and other abnormalities do so because they already have children they’re providing for, they live in poverty, and they experience other structural oppression that prevents them from carrying to term. (Just a quick note that I’m saying women here, because the statistics I refer to only studied cisgender women having abortions. Otherwise, I have intentionally used gender-neutral language, as Reproaction and I are committed to lifting up the experiences of all people who have abortions, not just cisgender women.) Studies show that between 70 and 85 percent of women with a prenatal diagnosis of Down Syndrome choose abortion. It is important to recognize that some of these women may consider carrying their pregnancies to term, but in addition to other reasons they chose abortion, are swayed by class and other marginalized status. Children with disabilities may require costly additional care — specialized healthcare, education, diet, therapy, and more. Parents who work outside the home must pay exorbitantly for childcare already. Parents who work outside the home and have children with disabilities must pay even more, or stay home. Either way, there is a devastating loss of income. Institutions are not set up to help parents raise high-needs children, particularly when those parents face other barriers like racism, immigration status, queerphobia, and class-based oppression.

Reflecting back on my own experience with disability, if I were to get pregnant, right now I would have no choice but to have an abortion. I cannot survive without taking my medications, and they would cause severe fetal abnormalities if I became pregnant. Pregnancy would cause hormonal shifts that could drastically worsen my chronic migraines. Beyond that, I know that motherhood would be incredibly difficult for me. This is not to say that people with disabilities are not fit to be parents, or cannot be good parents, but I feel that the chronic pain I experience daily precludes me from raising children. Any noise during a migraine can take me from a five instantly to a 10 on the pain scale. Holding something heavy for too long can trigger my cervical spasm (in my neck) and prevent me from moving my head for a week.

I worry constantly that I will miss incredible moments in the lives of the children I don’t even have. Some nights I’ve wept for hours just because I missed dinner with a friend. I simply can’t imagine what it would be like if I had a migraine when my child had a piano recital or a big game or graduation. And most importantly, I can’t fathom the regret and pain I would feel if I had a biological child and passed migraines on to them. My grandmother, father, mother, and both sisters experience migraines to varying degrees. The fear that any child of mine would have them is enough to make me not want to have children. Controlling my own reproductive future is absolutely vital to me as a disabled woman. It ensures I can stay on my medication guilt-free. It means I don’t have to worry about passing a genetic disability onto future children. It means that I can continue to afford my medications and not worry about how the money I spend on those impacts my family.

Choosing not to have children due to my disability does not mean that I think other people with disabilities should not have children. Disability has long been an excuse for the medical establishment has used to forcibly sterilize women. Parents with disabilities are stigmatized as being unable to appropriately care for their children. People with disabilities are also sterilized due to the rationalization that they would birth children with disabilities — in other words, children who are considered to be undesirable and a drain on resources in the eyes of a capitalist society. Furthermore, the US Court system has repeatedly affirmed the rights of guardians of people with disabilities to request sterilizations for the people who depend on them. As the Human Rights Watch notes, some people with disabilities who are sterilized are unable to comprehend or consent to the procedure, and are particularly vulnerable.

This reprehensible practice is a damaging symptom of the larger societal narrative about people with disabilities. The narrative, as I mentioned before, is that people with disabilities are a drain on resources. We are undeserving of public funding for our care, which is why it is so expensive for families to raise children with disabilities. We are incapable of making our own decisions. We are burdens. I have heard that I am lucky to have a partner who is so understanding of my migraines, anxiety, and depression. My sister (who is on disability due to the severity of her migraines) has heard that her former partner was “brave” to be with her. We are told we are defective, defunct, and pitiable. We are told we are not worthy or capable of making our own reproductive choices, and we are not fit to be parents.

The need for reproductive justice activists to talk about disability is clear. People with disabilities and parents of children with disabilities are disadvantaged by the healthcare, childcare, education, and economic systems. In addition, it is appalling that pro-life leaders do more to include folks with disabilities in the narratives in of movement — especially because ultimately they do not practice what they preach. Like they do with other marginalized groups (women, people of color), they care about fetus with a disability when it is utero and then do absolutely nothing to support a child with disabilities when they are born. We — reproductive justice advocates — are better than this. We want to upend these systems and make them work for marginalized people. We want all people to be in control of their reproductive futures. So we need to talk about disability — what reproductive freedom looks like for those of us with disabilities, and what it looks like to radically change culture and institutions to better support folks with disabilities.

Positions, positions, positions!

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

“A good position for sex is one that will let you do what you want to do, let you touch the parts of your partner or yourself that you want to touch, and let you be comfortable.”

This quote is from the Ultimate Guide to Sex and Disability (link). Here are a few positions contained in the book the Ultimate Guide to Sex and Disability that might provide some inspiration for your sexy times.

 

  1. One partner on top

“If one  partner has more physical strength and control than the other, they may want to take a position on top with their partner lying on their back or side.”

While some people consider the top to be superior or in all control, the person on the bottom can also have a lot of control either through verbal or non-verbal cues. Something as subtle as an eyebrow raise or a             certain look can tell your partner that you want them to do             something different, or increase pressure, or whatever.

There are some tools that can help with comfort levels if you have pain or stiff body parts. For example, you could try putting a pillow or two under you knees, so there’s no strain on your legs, or you could roll up a towel and put it under your lower back so that you don’t  get back pain. Experimenting with these different supports is very personal, but these are just a few ideas. The person on the bottom, if they want or are able to, can try raising their legs and putting their knees against the other person’s chest, or over their partner’s shoulders. This could allow for deeper penetration, potentially, or easier access to the clitoris or other parts of your genitals.

Illustration by Fiona Smyth retrieved from Ultimate guide to sex and disability reprensenting two people having sex with one lying down propped up by pillows

Illustration by Fiona Smyth for the Ultimate guide to sex sex and disability

2. Using your wheelchair

“Sex in your wheelchair has the benefit of speed (if you don’t have time for more than a quickie). You don’t even need to get fully undressed!”

Here are some considerations when fucking in a wheelchair: if it’s a manual chair or if the armrests move up or down you could remove or raise the armrests so that the person not using the wheelchair can straddle you. The person on top can either face the person using the wheelchair or they can ride them with a sort of alternate doggy-style. Meaning, more like their sitting down in a similar position that the wheelchair user is sitting in. If the person using the wheelchair wants, they can scoot forward with or without assistance, revealing whatever part they want to be touched or penetrated. This can also be a useful position for the person using the wheelchair to receive oral.

Illustration by Fiona Smyth representing two people having sex, one of them in a wheel chair while the other one is straddling them.

Illustration by Fiona Smyth for the Ultimate guide to sex sex and disability

  1. Lying on your side: There are so many different positions that people can potentially have sex in on  a bed. One such position is lying on your side. Some potential appeals for lying on your side-style sex: it can be effective for a person wearing a catheter attached to a leg-bag.

People with sore hips or leg joints can have sex this way without out needing to put too much weight or pressure on their legs.

People with tight hip or leg muscles or tendons can access this position perhaps more easily than say, missionary or doggy-style for example.

Potential angles

With the lying on your side approach to sex, angles can be quite important. You could try penetrative sex (either with a hand, penis, dildo…) in a spooning position, or in a T-shaped position wherein one person is lying head to toe in bed and the other person is lying  perpendicular to them (include diagram), or the sexual partners could face each other for either hand sex, or sex with toys, or penetrative sex of various sorts. Of course, there’s the classic 69 pose, wherein two partners pleasure each other with oral sex either at the same time or at different times, and there is of course the   buddy side-by-side position where partners can touch each other’s  bodies while lying in a relatively close distance and comfortable position.

Illustration by Fiona Smyth representing two person having sex while lying on the side in a bed. One of them has got a catheter bag.

Illustration by Fiona Smyth for the Ultimate guide to sex sex and disability

  1. There are many different ways to use furniture and household items as tools or settings for sex. One example is a bed or a chair or pillows or a table or a piano, or whatever. Figuring out positions and things that facilitate comfortable and enjoyable sex is about experimenting and using household objects and items in new, sexier ways. There are also some products that you can buy that help for positioning for sex. (More info on that on the document Pleasureable, sexual devices manual for persons with disabilities). There are also pillows that have been designed specifically to assist in positioning. They can be used for sexual positioning or simply lying in bed and reading or typing or whatever. There is a draw back, which is that they’re kind of expensive and so they can be financially inaccessible. According to the Ultimate Guide, some sex toy manufacturers make pillows that are for sexual positioning, however, they say that they are not the best quality and can break when weight is placed on them.

This is a non-exhaustive into the world of sexual positions! These are just a few examples drawn from the fabulous book, The Ultimate Guide to Sex and Disability, that hopefully will give you some ideas when you are imagining and when you are practicing different sexual positions. One of the most important things can be to check in with yourself and with the    person or people you are having sex with, and to ask yourself and         them-through the ways you communicate- if you’re comfortable. (link to consent + communication post)

If you’re not, imagine what would make you feel more comfortable and if you’re able to try to make that thing happen.

And when in doubt, try to have some pillows or extra blankets nearby for on-the-fly!

Photo: Illustration by Fiona Smyth From Ultimate guide to sex and disability represnting two people having sex while using the edge of a bed for positionning Posted on Tags , ,