The Internet is giant! It’s a library that will never get full (at least, I hope it won’t) and has decades of material. Most of us can barely get through news (fake or not) and opinions posted each day, let alone find the gems of the past. This week’s post is from Dave Hingsburger, published way back in 2006. (I think that makes it about 500 years old in Internet-time.) Dave started his blog that year, and has been writing, almost daily, since then.
I’ve written before about how much I admire Dave’s work.
He was one of the first to publicly (at great risk to his career) give voice to the fact that people with developmental or intellectual disabilities are sexual beings, that they have the right to have their loves and desires acknowledged and supported.
Here he is, doing that support.
Today I’m going shopping for a dildo and a butt plug – on work time, on a work mission. There are times I love working in the area of sexuality. This is one of them.
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The weird thing is that when I’m actually in the store looking for the purchase, I get kind of shy. I want to yell out “I’M HERE IN A PROFESSIONAL CAPACITY AS A THERAPIST WORKING WITH THOSE WHO ONCE HAD THEIR SEXUALITY REPRESSED – THESE ARE NOT FOR ME!!!”
It happens when parents send their gay children to “conversion therapy” to “turn them straight.” It happens when doctors withhold sexual health information, or sterilize a patient without that patient’s informed consent. It happens when the medical establishment performs medically unnecessary surgeries on babies because their genitals and other sex characteristics don’t match what medical textbooks say is “normal.” It happens when people with disabilities are denied sex education, or when disabled adults’ relationships are laughed off as “cute little friendships.” It happens when disabled people’s caregivers forbid relationships, separate lovers, and punish sexual exploration.
What happens?
People, usually people in power (like parents and teachers and doctors) are sending the loud and clear message: “We get to decide who you will be. We get to pass judgment on the essence of who you are.”
It’s not limited to people in power, though. Random strangers on the street make decisions about other people’s sexual choices, and sexual expression – it leads to everything from verbal taunts to profoundly horrific acts of violence.
What does this say? It says that the people around us – the ones we trust (or are supposed to trust), and the ones we don’t even know that some of those people believe they own our bodies.
This judgment, this control, this manipulation or ridicule – it all snapped into focus for me when I read this blog post from Dave Hingsburger, drawing parallels between the criminalization of LGBQ and transgender folks and the absolute, often punishing control, that’s been exerted over the sexual lives of people with intellectual disabilities.
It’s the idea of ownership, that people who make these sweeping and controlling judgments of sexual expression are acting like they own another person’s body, as if it’s right and normal to take this ownership, as if they have, or want, “ownership over another persons body, another persons heart and another persons choices.”
When was the last time you felt comfortable asking about your sexual health, or mentioning your sexual relationship, at the doctor’s office?
Sexuality is always a potential part of healthcare – we don’t usually leave our feelings, our relationships, our reproductive choices or experiences, and all the other pieces that can be part of our sexualities at home when we go for a doctor’s appointment, or wind up in the hospital, or talk to a social worker, or spend the day at the lab getting poked with needles or having pictures taken of our innards. Unless they specifically provide sexual healthcare, most of these people and places don’t include our sexualities in our healthcare discussions or plans. This isn’t going to work longterm for most of us; Most people identify themselves as being sexual or having a sexuality, and most of us are going to need to see the doctor or have medical tests at some point in our lives.
Natalie Rose and Sophie Delancey, the workshop presenters, focussed on the experience of people with chronic illness or disability, but they pointed out that people receiving routine or preventive healthcare are just as much a part of the system, and just as much in need of improved care around their sexualities. They were also quick to point out that criticizing the failure of healthcare to address sexuality isn’t an indictment of individual providers; it’s a criticism of the system that trains providers and sets policies.
This workshop was packed! They had to bring in more chairs. People want to learn this stuff.
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Natalie Roseand Sophie Delancey make a dynamic duo for presenting on sex and disability. Natalie was trained as an occupational therapist and has a spouse with physical disabilities; Sophie has worked in sexuality-related jobs since graduating from university and has recently become disabled. They’re also both super-vibrant and enthusiastic. They know their topic, and they love it.
One thing I really appreciated was that they both shared personal experiences and observations. Sophie’s role wasn’t just to be the disabled person telling her story and Natalie’s role wasn’t just as the rehab professional telling us about the research (or, in this case, the lack of research).
For example: At one point Sophie was telling a story about her time in the hospital after her strokes, about not being able to get the right words from her brain to her mouth to communicate that she felt crowded by having so many people around her while she was using a bedpan. Sophie pointed out that policies should address patient privacy, especially because many patients can’t speak, or can’t find the right words, or feel too stressed or intimidated to speak. She talked about how the rush-rush-rush of being cared for in a hospital or rehabilitation centre can feel invasive, and that it can feel dehumanizing, even with the best intentions, to not have the privacy around the most intimate parts of our lives (everything from using the toilet to sneaking a smooch with a partner) that most of us take for granted.
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Telling stories about our lives and experiences is crucial to developing empathy, to highlighting diverse experiences, to making sure people know they’re not alone. But if we don’t center that in something bigger – and that something doesn’t have to be a footnoted, bibliography’d academic paper – we’ll all be sitting their telling our stories without gaining insight, building tools, or developing the power to make transformative change. The people we really want to reach – the policy makers, healthcare providers, social service workers, support workers – are going to walk away and go back to doing their jobs if we continue to simply tell stories without making targetted, applicable recommendations for change.
I’d like to just dismantle the system, but we usually can’t do that, so we need to give folks the tools to make their systems better – to do their jobs better. Like I said, the room was packed during this workshop, and I’d like to think that healthcare providers left with approaches to make their practices more inclusive of sexuality, more accepting of disability, even if they can’t directly impact the policies that se patients and clients as little more than the specific health problem or life crisis they come in with.
Making sex okay to talk about.
Our medical system is based on facts, biological happenings that can be observed and explained. For example: Unless healthcare providers find a reason for a patient’s pain, that pain is often dismissed or belittled. Patients’ Reports of pain often aren’t included, or described in detail, on medical charts. if a physical reason for the pain isn’t found, it’s assume to not exist, an the impact of the experience of pain on personal identity, relationships, daily activities isn’t explored or addressed.
Biologically provable facts are just a part of how most of us experience sexuality. Healthcare providers who want facts don’t know what to do with identities, experiences, feelings – and they’re not trained to know what to do with any of that. They’ll look for research on sex, and, mostly, find statistics on birth control methods, sexually transmitted infection risk, and sexual abuse prevention. These are absolutely important, but, noep, not the whole picture by a longshot. Another part of the picture? Most Medical students aren’t getting the training they know they need to be able to address patients’ sexual concerns.
When people don’t get this training, when there isn’t solid research, people tend to substitute their own opinions, especially around things as loaded as sexuality is for most of us. Or, they just avoid the topic as much as they can.
It’s hard for patients to get their needs met in a fast-paced, overworked, undervalued healthcare system as it is. If that need has anything to do with sexuality, most people are going to feel super-inhibited. Sophie’s biosays she had worked in the adult industry for five years before her strokes. With all that experience talking about sex, she still felt intimidated at the idea of mentioning her concerns about her sexual function to her healthcare providers. She didn’t want to alienate people who were addressing all the other needs she had after a sudden and life-threatening medical crisis. She didn’t know the parameters for what was okay to talk about. If no one mentioned sex and sexuality, she sure wasn’t going to rock the boat by mentioning it herself.
When providers don’t ask about sex and sexuality, the message is sent that it’s not an important part of health and healthcare.
patients don’t know if they’re allowed to talk about sex;
providers are often the people in power, even if they don’t see themselves that way, and it’s ultimately going to be up to them to open the conversation.
Not that that’s necessarily going to mean (or that we want it to mean) your primary care doctor saying: “So, how about that sex life.”
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Some providers don’t like to bring up sex and sexuality first because they think doing so would conflict with their client-centered approach – therapy or treatment is client-directed, so if clients don’t bring up sex (or any other topic), the provider doesn’t ask.
Culturally, we have really strong taboos against mentioning sexual things in nonromantic settings – and even in romantic settings lots of people have trouble expressing themselves around sexuality, but that’s a story for another day – and many people have experienced doctors or other providers shutting down questions about sexual fears or problems. We’re at a point where healthcare providers are going to have to step up and be key players in changing the conversation.
Some of the ways Sophie and Natalie suggested showing that sex and sexuality are acceptable topics:
ON intake forms, include questions about sexuality, including whether the patient has any sexual concerns they’d like to discuss. If you think about it, we’re asked about all kinds of socially uncomfortable topics on forms and at appointments – poop, food choices, weight, menstrual cycles, you name it. We’re always allowed to not answer if the question makes us feel too vulnerable.
In intake and discharge processes: Include resources for sex and sexuality information, especially information related to disability or illness, in any packets of material provided to the patient. I need to add here that this packet should always be provided in a format the patient can read (This doesn’t usually happen; printed paper is the default. At the very least, someone from the medical ofice or facility needs to go through the packet with the patient so that they know exactly what’s in there.
When making a treatment plan. Occupational and physiotherapists, especially, work with patients to decide on the goals and direction for the treatment plan. They can include sexual or romantic activities in the examples they give to help their clients develop that list of goals. And no, I’m not suggesting that the therapy should involve sexual activity. There are plenty of non-sexual ways to meet physical goals for sexual and romantic activities. For example: Natalie mentioned that getting into and out of, and figuring out supports for the reclining bound angle yoga pose as a great nonsexual way to experiment with sexual intercourse positions where the person receiving would be lying on their back.
At the office, hospital, or rehabilitation (or log-term care) facility: Make this a sexually inclusive environment. Include sexual healthcare and relationship health pamphlets or posters available in the waiting area, and in exam and consultation rooms.
And, I really liked this one for providers: Wear a button saying something like “You can talk to me about sex.” As a silent reminder that sex and sexuality are accepted in that space. I should add: If the client or patient can’t read, or can’t see, they should be told about this, in the same sort of calm, “Oh by the way” tone you’d use to tell someone there’s bottled water available if they’d like some.
To all providers: If you don’t have sex an sexuality training, you can still talk to your patients about it. You can listen (that’s therapeutic in itself) and know who to refer them to.
There’s so much fear that goes into being sick, especially if it’s a sudden helth crisis, that, in my book, anything that will help patients feel better, feel more in control of their lives, have more pleasure, is a good thing.
Natalie told us about one woman she heard about, who, one year after her stroke went to her doctor for a follow-up, and asked when she was allowed to have sex again. He was, apparently, surprised, and told her she could have had sex any time that previous year. There that woman was, afraid that the sex she wanted would hurt her, and too afraid or shy to ask sooner.
Not that lack of sex ever injured or killed anyone, but all pleasure is precious, and no one should have to worry needlessly like that.
We need to talk about the fact that Kylie Jenner, a conventionally beautiful able-bodied woman who fits societal standards of beauty in almost every way is allowed to be sexy and edgy in a wheelchair, when that reality is so often denied to many wheelchair using women. We need to talk about the fact that disabled people, real disabled people, are still largely missing in media representation, especially media representation around beauty and sexuality.
When I first heard about Kylie Jenner’s wheelchair enabled photo shoot, I wondered: why a wheelchair? Why not a toilet, or adult-sized infant car seat, or a Victorian fainting couch.
Any of those could have helped her show how disempowered and imprisoned she feels by the media, and the first two would have given her plenty of options for the sexualized edginess she, or at least her photographers, were going for.
Instead, she chose a wheelchair, and BDSM gear, neither of which mean what she or the photographer thinks they mean.
So much has already been said about the choice to use a wheelchair in this shoot. I’ve stayed quiet all this week, because as someone who doesn’t use a wheelchair, this isn’t my conversation to have. but I wanted to pull this all together and look at it through a broader sexuality and disability lens.
let’s start with the BDSM gear.
Kylie wants to explore her identity. Lots of people use bondage gear, and BDSM gear in general, to explore who they are. Lots more use it to express who they are.
My collar is my mirror. It’s my wellness check. It’s my sense of freedom because it’s my sense of stability. It represents to me the journey I made through myself and my partner to earn my collar; The hard work and self-exploration and acceptance I had to go through to get it. When my partner takes me by my collar or cuffs me, or in any way binds me, it’s a reminder that I am face to face with myself in this life, and I’d better be the person I want to see close-up in those moments when I can’t break free. (Well, i could, but safe words aside, assuming they’re not part of this.)
I get bound for the kink, but within the kink, for me, is a much deeper place where I can feel safe and comfortable with who I am. Beyond that, my collar is my safety, reminding me I’m not taking on the world alone.
— Written by a friend (who is disabled, but isn’t a wheelchair user) when I asked about what the gear means in her BDSM relationship.
That’s not exactly imprisonment…and it’s not self-reinvention either. Sure, for some people, bondage gear is about putting on a costume, about becoming someone else, about doing something edgy and contrary, about reinventing oneself, even just for a little bit, but for most people, whether they’re dominant or submissive, BDSM gear is about expressing themselves more fully, not hiding from who they are.
Kylie was going for sexy. That’s usually what bare skin, corsets, and other fetish wear means.
Problem is, visibly disabled people (including folks in wheelchairs) aren’t read as passively sexual. Instead, we’re frequently read as nonsexual, as unlikely candidates for a sexual or romantic relationship. Or, we’re seen as sexually desirable because of our disabilities, which is a good thing, or a bad thing depending on who you talk to. Hint: Being transparent about finding disability attractive and sexy is good. Only being attracted to someone because they’re disabled (that is, not seeing them as a whole person) is not-so-good, unless the person is cool with it.
Either way, the sexuality of people with any type of disability isn’t automatically passive. People with disabilities have a full range of sexualities and sexual feelings, from not experiencing sexual desire or attraction (asexuality), to being submissive (not passive) in their sexual play, to desiring a traditional heterosexual relationship, to… pretty much anything anyone could imagine. It’s almost always the beliefs of others, not disability, that limit disabled people’s sexualities.
Now, the wheelchair.
Yes, wheelchairs do signify public scrutiny.
We’re told, by a representative from the magazine that the photo shoot “aims to unpack Kylie’s status as both engineer of her image and object of attention.”
most disabled folks don’t get to engineer whether they’re objects of attention or not.
As a visibly disabled woman, I never have the option to choose if I want to put myself on display. People stare at me, often directly and unabashedly, because my wheelchair demands attention. I’m not sitting to make a cultural statement, though. I’m sitting because it’s my reality.
A nondisabled person using a wheelchair in a symbolic way is treading a fine line between accuracy and appropriation because she’s dictating what the wheelchair means. yet the wheelchair can have no real meaning for her since she simply sits in it for the photo shoot, then gets up and walks away.
For someone who needs a wheelchair, it doesn’t – can’t – just mean one thing.
Wheelchair users need their chairs for diferent purposes. Some folks only use a wheelchair when they leave their house; others can’t get out of bed without one. What someone needs their chair for, how long they’ve had to use one, why they had to start using a chair in the first place – all these things are going to afect how someone feels about their chair, and what symbolic meaning it has.
Bethany and Ophelia are both crystal clear; their wheelchairs are what make it possible to do what they do, to live the way they want to live. Their wheelchairs are freedom, not prison.
It’s great that Kylie loves to experiment with her looks. A person with a visible disability can change their looks all they want to, it’s still most often the disability, or the assistive device, that people will notice first, or pay most attention to.
S.E. Smith points out that the whole photo shoot would have read very differently if it had been done with a disabled model, and could have made a “powerful statement” challenging the idea that women are there to be watched, that disability equals vulnerability, that a woman can only express sexiness by making herself appear passive, or at least for what passes as passive in the public imagination.
If I’m told I’m attractive, it’s often said that I’m “attractive for a girl in a wheelchair.” But Jenner is considered sexy, full stop, because people know the wheelchair is only pretend.
If Kylie Jenner really wanted to explore the way mass media represents her, she could have started by challenging that representation. What better way to explore feeling powerless than to express power? Instead, the photo shoot put her in a traditional feminine role (revealing outfit, serving drinks).
If Kylie Jenner really wanted to explore her powerlessness in the face of media sscrutiny, she could have started by exploring her sexual agency. She’s a young, conventionally attractive white woman. She’d have plenty of tropes and symbols to draw on for a photo shoot expressing how confined and controlled she feels without appropriating other symbols and totally missing the mark on what they mean.
I first met Kaleigh when she presented at the Guelph Sexuality Confrence on disability, desirability, and resistance. She’s thoughtful and charmingly funny in person, as well as an ace presenter. She’s also a refreshing voice in the sex and disability field, with lots of personal and professional experience behind her.
Kaleigh graciously answered some questions about her work for Ready, Sexy, Able. Thanks Kaleigh!
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Robin:You lecture and write a lot about sexuality and disability, but you’re also a sex educator at a feminist sex shop and you do some general disability awareness education, right? Can you tell us more about what you do? What does a typical Kaleigh work day look like?
Kaleigh:My days really vary all the time. Most days I endure doctors in the morning and sell sex toys in the afternoon, which I suppose is a pretty good balance of the bad and the good. I often teach workshops for Venus Envy in the evening, covering topics ranging from sex & disability to oral sex. And then it seems seasonally I find myself doing the really fun stuff of going to conferences and/or organizing around disability justice. Last winter a friend and I co-organized a protest to try and urge the city to more affectively clear the sidewalks, so that disabled folks could finally leave our homes (East Coast Canadian winters aren’t pretty). And then this past summer I presented at a different conference/festival every other week it seemed, which meant a lot of talking about disability politics with like-minded people.
I suppose that ultimately, my days aren’t typical. Which I like. And even though I am only occasionally doing big projects that advocate for disability justice & inclusion (like protests and presentations), I sort of feel like being a politicized disabled femme moving through the world means I am doing a little bit of advocating and a little bit of resisting all the time.
Robin: What would you most like disabled people to know about sex, sexuality, and intimate relationships?
Kaleigh: Oh my. I’m not sure. As a younger, less self-assured disabled person I would have loved to have had older disabled peers around to tell me that my body is valuable, desirable, sexual and good in and of itself. In my experience, having a body that deviated from the norm made it more difficult for me to figure out how to love myself and how to explore my sexuality.
For folks who are already fully imbued with that knowledge…I hope people know to communicate. Talk, sign, text, blink – however communication works for you. Essentially, use your body to take the space you need. Ask for pleasure. Demand for access. Our capacity to communicate for ourselves about ourselves is such a powerful tool in exploring sex, sexuality and intimacy.
Robin: What would you most like nondisabled people to know about disabled people’s experiences of sex, sexuality, or intimate relationships?
Kaleigh: Hm. Check yourself? Check the assumptions you have made about how bodies work and what bodies are desirable. Learn how to ask questions about comfort, positioning, needs, pleasure, access, all the things. Don’t assume that all bodies work the same, that all people require the same touch. Just check yourself.
Robin: Which writers and activists do you turn to over and over again for education or inspiration?
Kaleigh: I could reread the words of Mia Mingus, Eli Clare, and leah lakshmi piepzna-samarasinha over & over again. Reading other disabled activists writing about their experiences is the best way for me to feel kinship and to learn more about myself & my community. It’s a sweet relief and the perfect challenge all at once.
And then sometimes, I just watch youtube clips of Gillian Anderson being tough as fuck over and over again, because watching femmes get shit done is like listening to the perfect pump-up power jam.
Robin: What are you working on right now? What’s coming up for you in the next year?
Kaleigh: Good, hard question! I don’t totally know. I am reticent to speak about the future because it’s all a little murky. My book, Hot, Wet & Shaking: How I Learned to Talk About Sex, has been alive in the world for just over a year now, and I am feeling really ready to move forward from it and write some new work to attach my name to. I would like to get back to blogging, after taking a small hiatus. I would like to travel more and connect with other disabled folks across Canada & the U.S.
I did just finish putting together a new website where I want to write new posts pertaining to sex but also all things disability related. I’m excited about that! You can now find me at KaleighTrace.com. My previous blog, The Fucking Facts, was really fun and brought a lot of success and positivity to my life. But I sometimes felt a bit required to only write about sex there, and I would like to have space on KaleighTrace.com to write about everything from orgasms to femme politics to disability survival. So, please check that out to learn about my future endeavors and new projects.
Thoughts and observations from day one of Breaking Silences, Wright State University’s first sex and disability conference.
I opted for participating in discussions over taking notes, so these session summaries are just that, summaries of the content and my reactions to it.
Bringing (A)Sexy Back: Exploring Disability and Asexuality
Cara Liebowitz of That Crazy Crippled Chick wants to make sure we’re not leaving asexual disabled people out of conversations around sex and disability.
People with disabilities have been treated as nonsexual beings for such a long time. The efforts to correct that narrative have resulted in focussing on disabled people’s sexiness and sex lives, not on sexualities as a whole. IN general, for people who are disabled or nondisabled, we have a narrative that tells us that sex is all about looks, and about bodies, and about having sex with partners, and there’s practically no room for the words of people who have looked at and thought about their sexualities, and realized that they don’t experience sexual attraction or desire the same ways, if at all.
I’ve understood asexuality theoretically for a while now, but Cara gave some examples that helped me understand the experience better.
IN college, Cara’s friends would say they were “horny” all the time. Cara asks: What does horny feel like?
Asexuality isn’t necessarily the absence of sexual thoughts or feelings. Many asexual people desire and enjoy romantic relationships. Many have “passionate friendships” – Cara described these as close friendships with lots of physical (not sexual) intimacy like hand-holding, snuggling, etc. this makes a lot of sense to me since most people thrive on touch.
Some people on the asexuality spectrum do have some kinds of sex, with themselves, partners, or both.
Cara gave the example of an asexual person exploring sexual activity with a romantic partner. finding that they Enjoy learning about their body and they enjoy closeness and connection with their partner, but that they’d be just as happy having a pizza and movie date.
What does all this have to do with disability?
Some disabled people are asexual.
When sex and disability researchers and activists criticize the way disabled people are wrongly seen as asexual, we can be implying that asexuality is bad.
Cara suggests we use the terms nonsexual and desexualized to talk about the erasure of disabled people’s sexualities.
People also tend to use a lot of ableist language when talking about asexuality – assuming something must be medically wrong with an asexual person, that people are broken for not wanting sex.
Lack of sex drive. Disintrest in being sexual with a partner. Those are only problems if the person experiencing them says they’re problems.
Cara reminds us not to use all-or-nothing language in our quest to prove the sexiness of disabled people. Many disabled people want their sexual desires to be recognized and celebrated for what they are, but not all.
I think the announcement that Sins Invalid would be one of the Keynote presentations sold me on going to this conference.
It was worth the trip for that alone, though I was disappointed the whole Sins Invalid cast wasn’t there to give us the energy and passion of a live performance.
But, we did get to see a live performance by Maria Palacios the “Goddess On Wheels”, a showing of the Sins Invalid documentary, and a question-and-answer session with Maria Palacios and Sins Invalid Founder Patty Berne.
The documentary is touching, powerful, creative, unabashedly sexual, edge-pushing, and thought-provoking. I especially appreciated that the performance includes hard-hitting and painful details of disability history, including the forced sterilization of disabled people and medical experimentation on people of colour. That history is important, and not really well-known, and adds complexity to the sexier elements of the film. The beautiful is so much more beautiful when set against the ugly.
Maria palacios’ performance was sensual, her poetry both lyrical and firmly planted in her lived experiences of disability.
This line has stuck with me:
Flirting is the projection
Of what the soul wants to say
What the heart wants to speak.
Exposing Undergraduates in Human Sexuality Courses to Sexual Health Among People with Disability
Frederick Peterson Psy.D. and Colleagues
This was an overview of some preliminary research by professors who teach undergraduate human sexuality courses.
They wanted to know what kinds of material on sexualities and disabled people they should include in these courses, so they asked their students to anonymously submit any questions they had on the topic.
The most common questions asked, in different ways, how disabled people have sex, or if disabled people even want sex and feel sexual desire
I’ll admit I was surprised by this. I suppose I thought that even if people couldn’t figure out how physically disabled people would go about engaging in the acts around sexual pleasure, that they’d at least not have questions about whether disabled folks even desire that pleasure.
Reasons suggested for these responses: Students’ lack of knowledge about sex in general. Lack of exposure to concepts that disabled people date, have intimate relationships, have sex. Lack of exposure to disabled people in general.
The researchers also suspect that lack of sexual diversity and accurate information in education systems such as Abstenince Only Until Marriage programs (which often teaches incorrect facts about sex, sexuality, safer sex and birth control) also might colour students’ idea of what is possible.
This research is fascinating, and I’m eager to see what the next stages will be, including what conclusions the researchers will draw about how to teach undergraduate students about sexuality for all people, including folks with disabilities. Pete (as he likes to be called) pointed out: The research can only tell educators so much, since students only know to ask about what they don’t know. there could be and is plenty that people don’t know they don’t know.
Reclaiming Maternal Identity: The Impact of Forced Sterilization of Women with Disabilities
Alette Coble-Temple , Psy.D.
John F. Kennedy University
Kayoko Yokoyama, Ph.D.
John F. Kennedy University
Megan Carlos, Ph.D.
American School of Professional Psychology Argosy University, San Francisco Bay Area
Loved this presentation! There’s a lot to say about and in response to this topic, so I’ll just give a short overview of the presentation here.
With this in mind, the presenters started with the idea that the history of forced sterilization and other reproductive violences against people with disabilities has left its mark on the identities of girls and women with disabilities, especially around reproduction and parenting.
Some examples of microaggressions against disabled girls and women around reproduction:
Doubt that a visibly disabled woman’s baby is hers.
a visibly disabled parent being asked who takes care of their baby?
Healthcare providers showing surprise when a disabled patient becomes pregnant
Healthcare providers (and others) assuming that a disabled pregnant person will want or need to terminate the pregnancy.
It’s not just reproductive injustices of the past that stand in the way of disabled people becoming parents.
Many states have laws preventing disabled people from becoming parents.
Some people hold a deep (and well-founded) fear that their baby or child will be taken away from them by social services. This has happened many times, for no other reason than that one or both parents had a disability. Removing a child from its family when it is happy and safe in that family is an unnecessary trauma for the child, parents, and other family members.
Disability is still used in divorce proceedings as a reason to award full custody of children to a nondisabled parents, whether that’s the best choice for the child or not.
The statistics and stories in this presentation were grim, but the overall feeling was one of mutual support.
The presenters were open to questions, and invited audience members to talk about their own experiences and feelings about having children (or not having children). Two of us shared that we had chosen not to have children for reasons related to our disabilities, and our stories were welcomed as part of the overall narrative around disabled people, choice, and parenting.
Next up: Day two of Breaking Silences: “Don’t Call Me Inspirational, and, Research Into Deaf People’s Experiences of Interpersonal Violence.
I first met Bethany Stevens at American University, where we were both speaking on the Exquisite, Beauty is Disability ableism awareness panel.
Right away I noticed her confidence and passion (not to mention her brilliant mind that didn’t seem to miss a thing) and have been following her work for the past three years.
Bethany generously agreed to answer some questions on what drives her work in the field of sexuality and disability.
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Robin: You call yourself “an uppity crip scholar-activist and sexologist.”
Can you tell us what that means?
Bethany: I discovered the word “crip” through Laura Hershey’s poetry in my early 20s, and
identified with the political punch of the word so much that I started signing my email with “uppity crip
activist.” I was ridiculous enough to send my law professors emails with that signature line, whimakes me giggle now.
I am uppity – forceful, bound for resistance, and vocal when discontent about
discrimination. As I have aged, my investment in scholarship has grown to be the primary arm of my
activist life (and I have dropped “uppity crip activist” from my signature line).
My writing and speaking are as important activist expressions as my formal activist work, such as when I successfully fought for
an accessible testing center for students with disabilities to be built at the University of Florida. As of 2009, I took on the label sexologist after finishing my time in Morehouse School of Medicine’s Center of Sexual Health Scholar’s Program following completion of my Masters degree in Sexuality Studies at SF State. All together, these labels mean I am relentlessly vocal about the sexual and social value of disabled people. I may not be protesting as much, but my activist voice remains strong in me and will
always inform my scholarship. Disability culture and communities are a big part of my chosen family and home, my work will always be informed by these ethics.
Robin: What would you most like disabled people to know about sex, sexuality, and intimate relationships?
Bethany: It feels so simple yet deserves reiteration until the world knows this truth: disabled people are worthy of pleasure and love. We can give and receive pleasure in so many ways. Our bodies and minds sometimes require adaption to engage in sexual activities with us; those adaptions become
artful shifts away from “normal” modes of existence, opening up space to value different ways of being.
Meaning the ways we accommodate our bodies and minds can teach EVERYONE so much about sex – like communicating about where the body has sensation, slowing down to avoid triggering trauma for someone, or using specific strategies, like focused breath to enhance pleasure.
I love that if people got hip to disability and sex that this could be THE catalyst for a huge sexual awakening. While I wait for the massive awakening, I enjoy the moments of individual transformation and continue speaking to affirm disabled people’s sexual lives.
Robin: What would you most like nondisable people to know about disabled people’s experiences of sex, sexuality, or intimate relationships?
Bethany: Relax, we have sex or we don’t. Some of us are asexual, just like nondisabled people.
While it’s “cute” you might think it’s totally cool to ask a disabled stranger whether they can have sex – it’s not. Don’t be this person, please. Stop with the noise.
Disabled people are not all that different from the nondisabled people running around the planet. I’m not suggesting that disabled people do not experience unique structural and attitudinal barriers stemming from ableism, and other systems of
power associated with other identity markers. I am merely pointing to the fact that disabled people likely think of sex as much as others, we have been rejected, we have rejected people, life happens – and it doesn’t spare us because we walk with crutches or stim.
I would also encourage nondisabled people to query whether they find disabled people attractive. It’s important when doing this to unpack – or really describe – what disability looks like to the person. The key here is to figure out if disability is deemed attractive, why or why not AND where those feelings come from. I am not suggesting that everyone should be hot for me, for example, however when a
person has an all out ban against being attracted to disabled people there is something deeper going on.
Much like some authors have been saying the inclusion of “no fatties” or “no blacks” on Tindr profiles are reflections of fatphobia and racism, excluding disability just sets the same kind of prejudice into operation. Disability isn’t attractive because of ableist garbage we have been feed through various social means our entire lives.
One side-note: do not tell a disabled person or our friends that we are somehow either brave or going “to heaven” just for being us. Truthfully, before speaking these off the wall statements, think: “Would I like a stranger saying this to me?” before serving us microaggressions.
Robin: What are your favourite scholarly, activist, sexuality, or disability resources?
Bethany: Good grief, you know this is a hard one when you are a nerd. My most recent highly cited website is yours! The authors that have truly shaped me have been Marta Russell (wrote about how people make profit off disabled people), Barbara Waxman (named the need to politicize sexual pleasure of disabled people AND named disability hate), Laura Hershey (her artful poetry made me reconsider aspects of loving myself), Cory Silverberg (a true ally in the verb, not noun sense).
Robin: What are you working on right now?
Bethany: My nerd is showing again, because I am working on getting myself together to apply to PhD programs in sociology. There is a particular program that has a sexuality and gender focus that I am eager to start. I thrive on deadlines and generally in the classroom. I love teaching and with the degrees I have now, I am locked into teaching law and policy. While I appreciate those aspects of life, and bring them into my work, I need more space to talk about the social aspects of sexuality. That is where my
passion exists and I want to nurture it. Within the last year, my invited university talks have been focused on aspects of pleasure – how to politicize it and specific ways to achieve it. I am working on some projects with my friend and colleague Robin Wilson-Beattie (@sexAbled) that will take us into new audiences, which I am not ready to speak
of yet but would ask your readers to send some good energy to us. Our world needs more conversations on sexuality, because sexual health is central to our personhood, and our work is crucial to broadening those conversations to be inclusive of disability.
Bethany Stevens is a member of the inaugural class of Center of Excellence for Sexual Scholars program
at Morehouse School of Medicine (MSM), working under the 16th Surgeon General of the United States
Dr. David Satcher. From 2009-2013, she was a policy analyst and faculty member in the School of Public
Health (SPH) at Georgia State University. She continues to promote disability justice through disability
advocacy and independent scholarship.
Honesty, self-awareness, a wicked sense of humour, an unflinching sense of the ridiculous. You generally need all of these to be able to talk as candidly about your sex life as Kaleigh Trace has done in Hot, Wet, and Shaking: How I Learned to Talk About Sex.
These essays are about a lot more than talking about sex, though. They’re about love, and laughter, and what Kaleigh’s Grandma thought about the explicit language on her blog, and how to prepare for an interview at a sex toy shop (hint: you don’t need to be a sexual superstar), and first sexual experiences…
And through all of these stories, there’s pure, playful honesty about being disabled in a world that doesn’t easily accept people who are visibly diferent.
Hot, Wet, and Shaking is full of delicious details that made me feel like I was right there with the author. I feel like I could be right there with her when she’s talking about that time she pulled a sex ed prop out of her purse – in the middle of the grocery store (A Bag Full of Dicks). Reading Looking For Blood,I feel right along with her the fear and frustration of needing reproductive healthcare in a world that wants to make that hard to get, and wants you to keep it a secret. I nod knowingly as she describes her first crush on a woman: “My attraction was so painfully visceral that for a short time I was truly convinced not that I was gay, but that I had the stomach flu.”
Other stories share some of Kaleigh’s sexual misadventures (And The Warmth Spread Over Us), her awesome-sounding bike and it’s wobbly rider (How I Learned to Stop Worrying and Love My Tricycle), a delicious (in my humble opinion) piece of erotica written in a fit of frustration that there are almost no sexy stories about disabled people.
The Lady and the Butch is a contender for one of my favourite stories. It’s so delightful, I wish it were true – 100% all the way true. Really, an older lady coming in to buy her first vibrator ever, because her “queer lesbian” granddaughter told her to? It doesn’t get much more novel, and amusing, and ultimately touching than that.
But Kaleigh, while she wants to share with us the awesome experiences she’s had and self-discoveries she’s made since starting to work for Venus Envy takes her customers’ privacy seriously, so all store-related stories are fiction based on real-life people and events.
Where this book really shines is in the stories in which Kaleigh is being unfailingly vulnerable with us – not just because she’s usually talking about sex – though that’s great too – but because she shares parts of herself that make her uniquely her, and she sheds light on sexual stories and scripts we don’t usually get to hear but which are a part of a lot of people’s lives.
Fresh-Faced and Orgasm Free is some of the best writing in this book. It’s so much more than a “how I learned to masturbate” story. Kaleigh shares what it’s like to grow up with physical disabilities, to grow up interacting with her body in mostly medical ways. She describes lerning how to drain her urine through a catheter, how she became familiar with her genitals as a place she needed to manage.
As an adult she realizes: Touching myself was so common that it was hard to imagine it as a sexual experience. It was functional,
not hot. Necessary, not fun.”
Trying to learn about masturbation through the sex guides she sells at work, she realizes that none of them really speak to her experience. They all assumed that bodies work in certain ways…that all people can use their fingers to circle their clits, that everyone’s nerve endings fire in pretty much the same ways. “It occurred to me that perhaps I had yet to learn my way of coming because all the step-by-step methods I was reading, all the porn I had watched, and all the sex I had had thus far had not considered my disability.”
There’s so much more I’d like to tell you about this book, about the lyrical ways Kaleigh describes her body, about her observations of and fears around fitting into queer culture, about just how complex and unexpected the piece of erotica was.
But I’m not allowed to copy the book out here, so I’ll just encourage you to get it for yourself.
Thanks so much to Invisible Publishing for giving me an electronic copy of this terrific book.
Can we all agree that asking random people on the street (or in the mall, or anywhere, really) about their sex life is just plain creepy?
People with disabilities are asked, much more often than you’d think, how, or if, we have sex. No, really, this happens all the time. If it’s not about sex directly, it’s something to do with relationship status. Maybe it’s random questions about whether you’re married, or about your dating life. Maybe it’s your server at the fancy restaurant assuming the person you’re sharing a romantic candlelight dinner with is “just” a friend, or worse yet, your brother or payed caregiver.
***
Honey, if they’re with me then they’re not looking for normal — and I don’t mean because I’m crippled. Because sex with me can mean any fetish, any request you’ve always been afraid to make, any position you can think of. Because sex with me can be watching porn together, reading erotica together, or preferably making our own of both…
As with anything both taboo and sexy, Internet news sources picked this up right away, with headlines like What It’s Like to Have Sex with a person With a Disability.
Kelsey’s sexuality is clearly broad and flexible, and she has the gift of a lovely voice and the art of creating words that grip us and won’t let go.
I know I’ll be going back to this video for inspiration -the sexy kind, not the inspiration porn kind.
But this doesn’t speak to all disabled people’s sexualities – and I doubt Kelsey means it to, since she named her poem My Body – even as it’s the perfect challenge to the idea that disability makes someone not-sexy and incapable of or uninterested in sex, or to the idea that “normal sex” – (whatever that is) – is impossible for disabled folks.
The lives of people with disabilities are so often boiled down to being about our disabilities alone, – usually because nondisabled folks can’t imagine how life with a disability would work – that the idea of grocery shopping, or getting dressed, or having sex with one’s partner become exciting or alien concepts nondisabled people want to learn about the way they’d learn about astronomy or the mating habits of giraffes.
There’s also the assumption that all of these life activities are controlled first and foremost by the disability – that disability changes everything. Newsflash: It doesn’t. We’re just as likely to swoon over cute puppy pictures (or stories for those of us who can’t see the pictures), have ridiculous laugh-fests with friends, or get frustrated over the rising costs of milk. The ways we get dressed – whether it’s how we know what colours we’re wearing or how we put on our underwear or tie our shoes – are just the ways we dress, not anything better, or worse, than dressing the “normal” way – because that way of dressing is normal for us.
***
“I want to learn more about accommodating people with disabilities if I’m going to have sex with them.”
This was one of the answers I got to a question on Twitter asking what people most wanted to learn about sex and disability.
Since it was sex we were talking about, I asked if this wasn’t actually more about pleasure than about accommodation. When I think about accommodation, at least when it’s related to disability, I think of Braille signs on elevator buttons, equal opportunity employment, or buses that announce stops and have wheelchair lifts – not sexual intimacy or X-rated play time.
It turned out this person was concerned about hurting a potential disabled partner if he didn’t understand how their disabled body worked.
Fair enough – but… We don’t know how anyone’s body works until they tell us, until we’ve spent enough time with it to learn what every little sound or wiggle means. It ultimately doesn’t matter what someone’s body does or doesn’t do; no “Sex and Disability 101” Or “Sexual Exploration for Everyone” workshop is going to be able to tell you how to have sex with them.
The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges come up when we’re faced with things we’ve never encountered, and sometimes have never heard of.
Knowing something about different disabilities can take some of the mystery of disability out of the equation, and that’s a good thing. The more familiar words and realities like cerebral palsy, hemiplegia, degenerative retinal diseases, PTSD, etc, are, the less unfamiliar they’ll be to people, and the quicker they can get on with their everyday business, including getting it on with a new lover. It’s also a relief to disabled folks when people understand the basics of what we’re telling them, even if it’s as simple as knowing basic human anatomy.
Sure, there are general disability-related differences in romance and sex we can pretty much always assume to be true: A blind man can’t glance across the room and entice an alluring stranger with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, with going to the bathroom after sex. A deaf person will likely want to leave the lights on so they can read a lover’s lips, watch body language, or do whatever they need to do to communicate while getting it on.
Understanding disability by studying WebMD and Wikipedia won’t help anyone learn a lovers’ body.
We want answers, and formulas, for sex, and for understanding disabilities, and there just aren’t formulas for understanding either, or both together.
No one’s limbs work the same way, no one’s brain chemicals do the same things, no one person likes exactly the same sexual activities in the same way.
Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate.
I don’t necessarily suggest conducting an interview with someone you want to have sex with – unless question-and-answer sessions light your erotic fire, and theirs – but discussing questions like the ones below can be a good place to start if you’re just not sure what to do with this playmate you find so hot:
What feels good to you?>
How do we have sex so I don’t hurt you?
I want (insert your deepest fantasy, or just what your body craves that day). What do you want?
***
I think the connection we need to keep making between disabled people and sexuality is our right to want sex, to think about sex, to be sexy and express our sexuality – or not to do any of those if we choose not to. For some people that includes the right to have sex, but for others it’s more about the right – and the responsibility – to live in a world that’s so often about sex appeal, and where so many interactions are expected to have sexual overtones.
We used to describe these attitudes towards disabled people’s sexualities as seeing people with disabilities as “asexual.”
Asexuality is, however, an actual identity or orientation. It’s not generally seen as an absence of sexuality, but as a way some individuals relate to their own sexualities or with the idea of sexuality in general.
Disabled people can, and do, identify as asexual, without that having anything to do with their disability.
I think highlighting the variability of disabled people’s sexualities is important, and sometimes overlooked.
We emphasize so much that disabled people are sexual beings, that we forget that we’re allowed to be lousy lovers, or to have sexual relationships that don’t work, or to have lovers who just don’t enjoy our sexiness without that making them narrow-minded, ableist jerks. We forget that having sexual rights also means we have the right to be lousy in bed, that we have the right not to shock others with our sexualities, that we have the right to be celibate by choice.
So many disabled people don’t get choices, though. They don’t get privacy, or say in who provides their personal care, or who knows about their personal business. The idea that disabled folks who need physical assistance with daily personal-care needs (dressing, bathing, caring for their home, etc.) could also get assistance (without judgment) with the parts of their sexual and intimate lives they physically can’t negotiate themselves is deeplycomplicated.
There are no easy answers – so much of what I’ve brought up here would, and has, fill books – and there are no quick fixes for making mass changes to attitudes about disability, or sex, or disabled people expressing our sexualities. We’re talking about changing generations of attitudes about two experiences people hold so much fear around in general.
Welcome to the Ready, Sexy, Able news round-up for July.
This month we have news and opinions from all over the world, about everything from sexual health rights for disabled people to the changes that can happen in a relationship after disability.
I have also included some sex education articles that aren’t disability-specific, as well as a section for general disability rights pieces.
This review of Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement, available in both print and e-book, suggests that this research on the sexual lives of disabled people living in sweden and Denmark is valuable, but that at over 300 pages,and filled with theory and analysis, this book won’t be accessible to everyone who could benefit from reading it.
When was the last time you felt comfortable asking about your sexual health, or mentioning your sexual relationship, at the doctor’s office?