Jun 272017

A week ago I snuck into the National Alliance for Direct Support Professionals Webinar on supporting people with intellectual disability who are lesbian, gay, bi, trans, queer, or something else under the label of LGBTQ+. It felt like sneaking because I don’t work with folks with intellectual or developmental disability, directly or otherwise, but, actually, I signed up like everyone else. I’d heard about the Webinar on Dave Hingsburger‘s blog and I wanted to hear what he and the other panelists had to say.

I didn’t want to take a spot from someone who needed to be there for their work, so I signed up five minutes before it was scheduled to start, figuring that would make everything fair! :-)

Why did I go if I’m not a direct support professional? Promoting healthy sexuality for everyone is what I do. These conversations we’re having online are just the tiniest, tiniest part of what’s happening with disabled people’s sexualities in the world. If I can be a voice, no matter how small, to bring some of that into the light, I will.

I’m not going to go through all the facts and statistics they covered in this talk. They’re all in this article (this is a PDF file) from the International Journal For Direct Support Professionals.

Don’t be put off by the word journal. This one’s easy to read – not full of scholarly words and long rambly sentences. Basically, it looks like this journal is written for busy people who need the facts as quickly as possible!

But, there were a few interesting tidbits from the Webinar I’d like to share.


It shouldn’t still need saying, but people with developmental disabilities are entitled to the same rights as all people; from the journal article linked above:

  • Sexuality and sexual expression
  • Dignity and respect
  • Privacy, confidentiality and freedom of association
  • Access sexual education reflective of their cultural, religious and moral values

That people with intellectual disabilities haven’t been respected in these ways has lead to tremendous harm. Dave told the story of a client who had grown up in an institution, but was living in the community when Dave met him. The client was deeply depressed, though most of his care team decided he was just unmotivated. Dave and other supportive staff eventually learned that this man had had a long-term relationship with another man with intellectual disability when he lived in the institution. This man was grieving the loss of his lover. Once understanding staff members new what was going on, the lovers were reunited.

That story had a happy ending, but it just as well could not have – and the ending might not have been any happier if the couple in question was heterosexual.

The denial that people with intellectual and developmental disabilities even have a sexuality runs so deep that just asserting their desire and right to date someone can be like them “coming out” as heterosexual – met with disbelief, ridicule, rejection, punishment.


This panel tried to answer: How do people with intellectual disabilities know it’s safe to talk about their sexual orientation and sex and sexuality in general?

A few quotes that jumped out at me related to how folks work with their clients:

“If you haven’t made yourself a clear ally, you’re not an ally.”

“People in your care need to feel safe from you.”

“It’s my job to earn their trust not their job to give me their trust.”

“When you push someone to have a conversation, that just becomes another kind of abusive act.”

Allow people (applies just as well to friends or family as to clients) to come forward when they feel most comfortable.

Show acceptance and willingness to listen by being nonjudgmental in other areas of their lives.

For example: Avoid judgmental comments on their preferences, such as that they shouldn’t put jam on their peanut butter and toast because it has too many calories. (Support professionals are their to support adults with intellectual disabilities with living their lives to the fullest. That means not micromanaging or taking autonomy away – making sure these adults have choices, and access to whichever choice they choose. )

People will not trust you with the bigger stuff if you’re always harping at them about the smaller things.

Direct support professionals were encouraged to figure out who will be the carrier of sexuality information at their agency. Talking about sex and sexuality is something most people are pretty bad at, and giving the right information to clients with intellectual disabilities means being able to talk comfortably about sex and give accurate information.

I really appreciated how honest and down-to-earth the speakers were – acknowledging that sexuality is messy to talk about in general,. We’re dealing with all sorts of social taboos, as well as the wrong-headed thinking that has governed the way the sexuality of people with intellectual disabilities has been “managed” for centuries. That’s not something anyone can reverse overnight, or through a journal article and an hour long panel discussion. I also appreciated that they acknowledged that many agencies serving adults with intellectual disabilities still have restrictive policies around acknowledging sexuality, and that staff at those agencies probably weren’t being given access to educational seminars like this one.



As I was putting this post together, I came across this piece published in Slate last week. Really impressed with how the writer and editor chose to put this together, with the voices of folks with intellectual disability front and center.

Postscript the Second

The overall theme of this Webinar and the accompanying journal article was pride, and the article has one of the best, most direct, answer to the question: “Why isn’t there a straight pride day?” I’ve ever seen:

Because heterosexuality has never been outlawed, punished, or considered a mental illness and being heterosexual has never been cause foar a child to be thrown out of a family, or for someone to lose their job or their home.

Sep 132016

We’re all normal.

let me repeat that, we’re all normal.

Our bodies are normal.

Our relationships are normal.

Our sexual desires are normal.

Our sex lives are normal.

Note: This only applies if you don’t use sex as a weapon. If you do,stop…just stop.


Emily Nagoski is the Wellness Education Director at Smith College. During her keynote at this year’s Guelph Sexuality Conference, she shared one of her most life-changing moments teaching college students about sexuality. When she asked her students, on the end-of-year exam, so, you know, they had to answer – what one thing they learned from the course, the answers were, overwhelmingly, some flavour of “I learned that I’m normal.”

When we (and I mean we of any age, not just young people) talk to our friends, or read sexy novels, or watch movies, we see and hear conversations about sex that often just don’t resonate. We get the message, from those books and movies, that there’s one kind of sexy, and we’re not it. We worry, when we talk to friends, or see their bodies, if our desires aren’t like theirs, or our bodies don’t look like theirs. This reminds me of when I went to Cara Liebowitz’s workshop on asexuality at the Breaking silences conference and she shared how strange and isolating it felt to hear college friends talk about feeling horny, to hear the trope that all young people want sex, and to not know, on a gut level, what horny even felt like.

Another example: Most of us aren’t too interested in sex when we’re stressed, right?

Right – but most isn’t all. Apparently, studies have shown that 80% to 90% of participants reported trouble getting aroused when they were stressed out. That leaves 10%-20% of participants who got more revved up sexually when the stress piled on. Neither way is “right,” it just is – though I’m guessing it makes for lots of misunderstandings in relationships.


Emily wants to help people understand their own sexualities, and figure out what kind of sex (if any) they want by looking at what the science has to say.

If you’re a sex nerd like me – or, just a nerd – this is super exciting. I was on the edge of my seat, frantically taking notes, the whole time Emily was talking.

That said: Relying on the science does have limitations. As Emily pointed out, science still classifies people as either male or female, depending mostly on what they have between their legs. Yeah, there are other ways to measure that, but most of us haven’t had our chromosomes tested. And, even if we did, maleness and femaleness aren’t so clear-cut as all that. Sex and gender are way, way more complicated.

What Emily didn’t mention in her lecture was that there are other unknowns when we’re looking to science to tell us just what the heck’s going on with our sexualities and sex lives.

We’re limited by who gets researched: Is it mostly college students? Mostly nondisabled folks? Mostly people from one cultural background or another? Mostly people who are evaluated as being in “good health?”

How we experience life affects how our sexualities develop. it affects how we relate to our bodies, to other people, to the world around us. Our personal histories can affect how our bodies react, and how we react to our bodies

My biggest take-away from all the scientific research is that the results give us new ways of looking at the world, new ways of thinking about sexuality, and new ways of -possibly – understanding our own bodies.


The research also clears up, once and for all, a misconception that’s been around far too long!

When you’re having sex with someone, listen to what they’re telling you, not whether they’re hard, or wet, or panting, or flushed, or….

The way someone’s body reacts, doesn’t tell you whether they want to be having this sex. It’s called arousal nonconcordance and while the studies show that it happens more to participants who were categorized as women – in other words, people with vulvas and vaginas – this can happen with any person, at any time, for any reason. Yes, even people in long-term relationships can have their bodies act like they want sex, when they couldn’t be less into it. Wanting sex one day doesn’t mean wanting it the next, even if all the physical arousal signs are there.

It doesn’t help that wanting sex is usually talked about in terms of how fast someone got wet, or the fact that their penis was hard. I don’t know about you, but most novels I read take us from casual flirting to full-on arousal (and, implied, full on interest) in less than thirty seconds.

Emily read us a passage from Fifty Shades of Grey (first time i’d read any of it, and I doubt I’ll be reding more). Christian is spanking Ana, and remarks on how much he “knows” she likes it because he sees her wetness. Meanwhile, Ana’s thoughts are all about how much she doesn’t like it, and wondering why she’s doing this, and justifying to herself why this is okay.

Nope, Ana is not aroused, or having fun!

The worst part of judging whether someone wants sex by what their body is doing, rather than on what they’re telling you is when that person’s “no” or “slow down” or “I don’t want this” isn’t listened to. A friend told me recently about a mutual acquaintance who was trying to make out with her. He stopped when she asked him to, but he couldn’t resist observing that her nipple had gotten hard, as if that was some kind of hard evidence (no pun intended – really!) that she enjoyed the contact even if she said she didn’t want it.

Then there are the people who don’t stop. It’s way too common (and makes my stomach turn! – No, scratch that: Fills me with rage!) that sexual abusers will insist that their victims must have liked it, because they got wet, or had an orgasm, or moved their hips, or whatever lie seems to fit best and work to manipulate or discredit the “I didn’t ask for or agree to that.” Little do they know: Science is not on their side.

If the mind is saying no, we listen to that, however someone communicates that to us. period.

Here’s a Youtube video on arousal nonconcordance (fully captioned).


The second most pivotal thing I learnd was this:
Scientifically, sex is not a drive; we don’t need sex to survive, the way we need food, or water, or sleep, or enough sodium (salt).

No one ever died or got injured for lack of sex.

So, what we call a “sex drive,” that feeling that makes us want to get our sexy on? That’s actually called a sexual incentive motivation system. That doesn’t roll off the tongue so well, but there you have it. It’s totally fine if we want to keep calling it a drive, as long as we understand the differences.

A drive is for something we need to have to survive – like I said above: water, sleep, food, certain minerals from food.

An incentive motivation system is an external thing, external attraction, that pulls you into it and compels you to explore. Think of it like being intensely curious about something where you start reading everything you can on it, talking about it all the time, living it day in and day out, versus being dry-throated, fuzzy-mouthed “dying of thirst” thirsty.

According to Emily, when we say we have a high sex drive, we’re basically saying that we have a high curiosity for sex, a strong pull to explore sex or feel sexual sensations.

I have this in my notes, which I really love: Your partner, or a sexual act, is a source of wonder, exploration, curiosity – hot curiosity.


  • We do not need sex to survive.
  • Sexual frustration will not kill you.

Sexual frustration will not kill you.

I repeat: sexual frustration, lack of sex, unsatisfying sex, not having a sexual partner – won’t kill you. It won’t even make you sick.


The title of this presentation was “Pleasure is the Measure.”

when we shed the things we think we’re supposed to do, or feel, or think, about sexuality, we’re left with what we want.

It doesn’t matter who you have sex with, or how, or why, or where (as long as you’re obeying local laws), or even if you’re having sex at all.

What matters is that it’s what you want to be doing.

It’s not just sexytimes and orgasms that make the plesure happen; it’s feeling safe, happy, secure, not doing things you don’t want to do, knowing what you do want to do.

Further Reading

Come As You Are

The dirty Normal

A sexually accurate romance novel “How Not To Fall”

Aug 252016

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.

Last month I wrote about all the fantastic stuff I learned at the session on sex, sexuality, and relationships for neurodiverse folks at the Guelph Sexuality Conference.

Today our topic is Health Care’s Erasure of Sexual Pleasure.

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.


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.


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.”


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.

Jul 212016

I was excited to see Noah Eidelman’s workshop Neurodivergent & Naughty: Sex and Sexuality for folks on and around “the spectrum” on the schedule at the 38th annual Guelph Sexuality Conference., where I spent a fun, exhilarating, exhausting couple of days in June. Collectively, our conversations about sexuality and disability are still revolving mostly around physical and sensory impairments or illnesses. When we turn to intellectual and developmental disabilities, we’re still too often stuck at the question of ability to consent, or at validation of sexuality (including asexual identity) in the first place.

Noah’s presentation took us beyond that conversation, to the factors that can affect relationships, sexual identity, and sexual expression for neuro-atypical or neuro-diverse folks. Noah likes the shorthand of neuro-weird or neuro-whatever. As someone who would be considered neurotypical (more on that in a minute) I don’t feel comfortable adopting the term neuroweird, but I love it…because it describes just how messy and imprecise the whole neurodiversity umbrella is.

Noah started the presentation with some definitions and language etiquette.

I was pleased that Noah mentioned the problems with referring to someone as high- or low-functioning, something that’s done a lot, especially with autistic or mentally ill folks. This kind of language is a problem because it places value on the ability or inability to do something. Whether someone can tie their own shoes, count to ten, wipe their own butt, or live on their own without help isn’t a moral question. Assigning a functioning level to someone is supposed to tell the story of what supports or technologies they need, but it’s a sloppy shorthand. Much clearer to spell out what a person is or isn’t physically or mentally able to do.

When we talk about neurodiverse folks these days, we usually think about autistic people first, but the neuro-atypical umbrella can include people with ADD or ADHD, people with learning disabilities such as dyslexia or dyscalculia (difficulty learning or understanding number-related stuff), people with mental illnesses such as bipolar disorder or schizoaffective disorder, and other people with neurological disorders, brain injuries, and developmental disabilities.

In short, we’re usually talking about people who have been labelled with some sort of medical diagnosis. Sometimes, this is helpful, when it means that someone gets the support and validation they need for how their brain works. But the diagnostic process also has a really intense history of racism and cultural bias – for example, the history of racial prejudice in intelligence testing.

There’s really no such thing as a normal brain. I’ve looked for definitions of neurotypical, and most of them boil down to “not autistic” – an oversimplification on my part, but not much of one. IN everyday use, “neurotypical” often refers to cognitive functioning, learning ability, and what would be considered stable mental health.

I think that what we usually mean when we say neurotypical is the brain that can manage, or mostly manage, to deal with the world as we’ve set it up, to learn in the one or two ways that are considered acceptable or “normal,” to emotionally cope in the environment, to react to stress and external stimuli (loud noises, flashing lights, crowded subway cars, etc) in culturally acceptable ways.

None of this actually means, for example, that noisy, crowded, fluorescently lit environments are ideal, or good for our physical health, or anywhere close to ideal for helping us understand and remember things, or that the way we’ve set up classrooms and the way we teach information actually supports learning, or that our culturally sanctioned ways of conducting a relationship and communicating about or during sex are actually useful or health-promoting. So-called neurotypical folks just happen to be the majority (and majorities don’t always refer to the largest groups of people).

Here are just a few of the points Noah shared about neurodiverse folks’ experience of and needs around sex and relationships.

  • Communication needs and methods: Some folks are nonverbal, partially verbal, or only verbal some of the time or in specific situations. These folks communicate through writing, sign language, or other nonverbal methods. Other people struggle with social aspects of communication, such as how to make small talk.
  • Sensory Issues: Some folks are sensitive to being touched, or have strong negative reactions to specific textures, or temperatures, or ways of being touched. I think it’s important for we neurotypical folks to understand that these reactions are often Not just expressions of discomfort, but of deep distress.
  • Social skills: Trouble with or fear around meeting people, with knowing how to negotiate different relationships – neighbor, boyfriend, stranger. Some folks may also struggle with what diferent social cues mean, or when and where to act out diferent social behaviours. Noah stressed that not all neurodivergent people will struggle with social skills, and that some folks may have good and bad days with regards to their abilities to understand social cues, depending on their level of anxiety, whether or not they feel overstimulated, or other factors that might affect how their brain functions.
  • Self-esteem: A lot of neurodivergent folks have a low sense of self-worth. Here’s how I understood Noah’s explanation for part of why this happens: When you’re always told you’re doing something wrong (not expressing yourself the right way, not being socially appropriate,, “overreacting” to events or stimuli – loud noises, etc – that “should” be “no big deal”) and people are trying to show you the “right” way to do that thing or react in that environment, it can take a toll on a person’s sense of self and make them value self less.
  • Gender: Many neurodiverse folks identify as genderqueer;. If you already have a different perspective on the world than the one society dictates we all adopt if we’re going to be “normal” prescribed roles of maleness and femaleness already make less sense. These roles are less likely to feel right for yourself if they don’t make sense to begin with.

Even progressive understandings of sex and sexuality can exclude the experiences and needs of neurodiverse folks.

Our basic understanding of how to do enthusiastic consent doesn’t account for the communication or sensory needs some neurodiverse folks might have during sex. A person’s inability to consent might have nothing to do with whether they do or don’t want the sexual activity to continue. Sometimes folks can be so overwhelmed by the sensory input of sexual activity that their ability to speak, or to find the right words, or even to acknowledge that they’ve been spoken to might be impaired or absent altogether.

If communication is not being understood. If the person doesn’t have words. Or the words that come out aren’t the words expected for that situation, the feeling behind the words may not be understood or respected and this is when misunderstandings, and assault happen;

If their senses are overwhelmed, a person may not be able to say what’s wrong or how to fix it.
If “I don’t like this” comes out as movie dialogue or a word being repeated over and over… it’s unlikely a partner will understand, and know to stop what they’re doing, unless they’ve been told ahead of time that this is a typical response to feeling uncomfortable, anxious, or otherwise needing the sex to stop or change.

What to do when this is someone’s reality.

  • Set parameters about what’s going to happen during sex up ahead of time, when that’s the only thing people are thinking about, and there isn’t a whole bunch of sensory input to compete with.
  • Agree about wants, desires, and boundaries ahead of time in whatever communication form is strongest for those people on that day.
  • agree to what activities will or won’t happen, and agree to what words or signals will be used in the heat of the moment to indicate consent.
  • Noah suggested using a a neuro-diversity and sex checklist, like this one.

To help with communication during sex, people can try:

  • Asking their partner yes/no questions. For example: asking “Do you like it when I…” instead of “What are you feeling when I do this?”
  • Or, ask ranking questions.”How much are you enjoying this, with 1 being not at all and 5 being “Hell,yeah, don’t stop.”

It’s ironic, in a pleasant way, that noah’s presentation gave me new and interesting ways to understand some things I already knew.

I hadn’t, for example, thought about the ways special education and behaviour therapies could impair a person’s awareness of their own body, sexually and otherwise, but it makes so much sense. When you’re told that your perception of the world isn’t accurate, you can, I imagine, start not believing that any of your perceptions or sensations are accurate, or that they’re acceptable.

When you’ve been trained that the way you react to loud noises is socially unacceptable, you can start to lose touch with your instincts.

When you react negatively to being touched, and you receive behavioural therapy to “teach” you how to handle touch, you might start thinking that you’re not allowed to have boundaries around what’s done to you or how you feel about what’s done to you. This could have some pretty negative consequences for a person knowing how to protect themselves from unwanted physical or sexual contact, knowing how to ask for the kind of physical or sexual contact they do want, and for understanding and respecting other people’s physical and sexual boundaries.

Having these kinds of experiences can result in feeling out of touch with your own body, and you can need reinforcement that your body is their own.


Over and over again, I’m struck by how much our disability-inclusive conversations about sexuality are really the conversations everyone needs to be having about sex and sexuality. Like: Of course no one is the same (E.G. your current lover isn’t necessarily going to like the same things your last lover did, so having signature sexual moves isn’t going to do much for anyone except the lover who likes them.) IN other words, there’s no one –size-fits-all, magic bullet sexual technique that you can use and thereby avoid the awkwardness of asking your partner what they want.

Our ideas about what’s supposed to happen when in a relationship? They depend on being from the same culture, and being willing to mess up a lot because one of you thinks that first dates are for kissing only, while the other is sure the cultural rules say “second base” is absolutely acceptable. The idea that there’s a right way to do sex and relationship stuff and that everyone knows that way without having to talk about it is just a messy, harmful myth.

For folks who can’t pass as neurotypical, there are very real struggles, interpersonal misunderstandings, and traumatizing incidents – all of which can seriously impact sexual expression, or even how a person understands their own sexuality. Add this to cultural myths and you often have a mess.

There are so many parallels between the things that neuro-atypical folks find they have to think about, and the things so-called neuro-typical folks need to be thinking about if they’re trying to have healthier sexual relationships.

More About Noah Eidelman

Noah Eidelman is based in Montreal.

From the conference Web site:

Noah Eidelman is an atypical support worker, community organizer, workshop facilitator, childcare provider, and all-around nerd. Noah’s interests include (but are definitely not limited to): confronting systems of power and privilege, challenging assumptions and stereotypes, trauma theory, disability and disability justice, first aid and community healthcare, the awesome stuff learned by hanging out with kids, reading, cartoons, and pigeons.

(A love for community healthcare and pigeons? Rock on!))

Jun 072016

Disabled folks often get conflicting messages about what people think we can do. ON one hand, we’re seen as superhuman – as as supercrips of the highest order – or as childlike and incapable – or worse, less than human.

I recently wrote about the emerging voices of disabled parents (including the voices that aren’t being heard), and I remembered how this contradiction between capable and helpless played out in what I learned when I was growing up.


Growing up blind, going to a school for blind students, I always understood that blind people could be parents. Teachers and support staf said things like: “When you grow up and have kids…” Sometimes, a parenting class was offered for high school students – a lot of raw eggs (which are so very much like live babies, don’tcha know) rode home on the schoolbus with their “Mommies” and “Daddies” – though they’d stopped offering that class (maybe they ran out of eggs?) by the time I was old enough to take it.

But…when it actually came to talking about real live blind parents, what was said didn’t line up with the “blind people are capable” message. The subtext behind “she looked so tired” of the blind Mom shopping at the mall with her four children was that she and her blind husband shouldn’t have had so many. Behind the observation that another set of blind parents had a messy house was the implication that they couldn’t possibly take care of themselves, and their children, and their house – because of blindness. The mention of a single blind Mom’s baby not “smelling the freshest” was an indictment of her mothering, because clearly properly coupled (and married), able parents never walk around the grocery store with a baby who smells bad. I rarely heard these criticisms of visibly nondisabled parents; or, if I did, they weren’t so sweeping and self-righteous. It’s that old problem of something being blamed on a disability, when maybe a parent is just having a really awful day, or hadn’t had time for the weekly housework, or had a million other things going on that were way more stressful and hard to deal with than their disability.


I think I was in Grade 11 the year a “blind mother” was part of the annual Career Day line-up. I was sscornful, even a little angry; other schools didn’t have people come in on Career Day to talk about parenting – I was sure of that! (And I probably did have something there.)

But, okay, let’s be real; I turned my nose up at the very idea of a talk from a Mom being on par with a session given by a lawyer, or a massage therapist, or an artist. No, not one of my more enlightened moments!

Looking at it now, knowing that being a parent is bloody hard (sometimes literally bloody), and underappreciated work, and knowing what’s stackd against disabled parents (negative attitudes and legal barriers), I think we did need to be hearing from folks who were actually living this life that people told us we could live.

Actually, we needed to hear more from blind and visually impaired folks just living all parts of their lives – getting married, choosing to parent or being a caregiver to family members, choosing to pick up and move to Columbia for a year, or… As blind children we actually needed to hear a lot more from blind adults in general, – to learn from their experiences, from their processes, their successes and failures, the tricks that worked for them and the on-the-fly adaptations they made – not just to learn from the teachings of nondisabled people, who taught us how to get around by listening to traffic sounds and using our white canes properly, or how to cook safely (without ever, ever burning yourself), or how to read when most of the material out there (this was in the 1990s, before the explosion of the Internet) was beyond our ears or fingertips, or was too small (or the wrong colour) to read with impaired vision. We needed to learn what ableism and inaccessibility both looked like, how people responded to those experiences; we needed to learn that the tools and techniques were great, were useful, were indispensable really – they’re just not always enough.


Back to parenting…

None of what I learned or observed affected my decision not to be a parent – a parent to human beings anyway. That’s a different disability and reproductive rights story I may or may not tell some time. Having kids is a deeply personal choice, you know.


There’s nothing about having a disability that makes someone less capable of parenting.

That feels too obvious to even say, but it’s a truth, obvious or not, that needs to be repeated over and over until people get it, until disabled parents don’t have to fight tooth and nail to be able to care for their own children.

It’s a truth I’ll repeat: Disabled people can be parents. Disabled parents are just as capable of being strong, nurturing, loving parents as anyone else.

How well a person parents has way more to do with whether they wanted to be a parent in the first place, how much social support they get, and their own unique personality.

All parents are going to find, some time or other, that they respond to their child in a way that’s confusing or upsetting, and this is just as likely to happen in a context that isn’t disability-related at all.


According to Judith Rogers’ book The Disabled Woman’s Guide to Pregnancy and Birth, what babies most need from their primary caregiver – the person or people they form a bond to and know they can depend on – are food and comfort. Any other needs can be met by anyone the baby knows and is comfortable with, and whom the parent trusts.

Yes, that means it really can take a village to raise a child, and that a parent (whether by blood or adoption) can be an amazing parent even if they can’t carry their baby around the house, or dress it, or give it a bath, or if they do all those things with one hand, or rolling around the house in a wheelchair, or by touch and smell only, or only on days when their pain levels are low enough to let them get out of bed.

The interviews in this book highlight how adaptable children are. They don’t count their parents’ fingers and toes first thing! They don’t know that most people change diapers with two hands, or look at the number on the thermometer instead of listening to it read aloud, or run to pick them up every time they let out a squeak. They don’t know there’s a way their parents are “supposed” to do things; they just know “Is this person here for me?”

One woman Judith Rogers interviewed shared a story about how her toddler fell on the stairs, picked herself up, walked over to Mom’s wheelchair, climbed into Mom’s lap,and only then began to cry. Needing to go to Mom for comfort, instead of Mom coming to her, was just part of this little girl’s life. (And for people who wonder what the Mom would have done if her child was severely hurt and needed help? Well, she would have moved mountains is what she would have done. They just would have been different mountains from those in the way of someone not using a wheelchair.)


With so many disabled parents (at least 4.1 million in the U.S. alone) caring for children, you’d think there’d be more support for them, and recognition that disability is rarely at the top of the list of deciding factors for whether someone is fit to parent. That there isn’t this support, and that there is active resistance to the idea that children can grow and thrive in homes with disabled parents, speaks to, I think, the tendency to treat adults with disabilities as childlike, and to the idea that parenting tasks can only be done in one way.

Consider this advice from Disability, Pregnancy, an Parenthood:

“Do not try to show practical things (such as bathing/changing and breastfeeding) and talk at the same time. It is impossible to look at two different things at the same time. Explain, show, check understanding, let the deaf parent try it out and then correct any misunderstanding.

Working With deaf parents: A Guide for Midwives and Other Health Professionals

It makes sense that you wouldn’t teach something to a blind person based on a diagram, or force a deaf person to choose between watching your hands or watching your face, or decide someone with one hand can’t possibly prepare a bottle even though they manage all their other life tasks successfully, if not easily. But when it comes to parenting tasks, we seem to have these conflicting ideas that parents will just “know” what to do, and that there’s one acceptable, safe way that everyone needs to lern. And, when disabled parents don’t know what to do (because who ever knows when they become responsible for a new life?) and they’re not capable of following the good-parenting checklist, they’re often seen as lacking.

What’s the solution?

Listen to people who are living it!

May 202016

In thirty-five states (and the District of Columbia), children can’t trust that their healthy, happy family will be able to stay together if one or both of their parents is disabled. That means that in almost three quarters of the U.S. the law allows for children to be removed from their parents based on parental disability alone, no evidence of abuse or neglect necessary.

How is this fair to children, let alone their parents?

There are at least 4.1 million disabled parents in the United States. Most sources for this statistic are clear that it’s likely an underestimation; there are probably many more disabled parents who just aren’t being counted.

But, they do count – and many of their voices spoke at the White House Forum on the Civil Rights of Parents With Disabilities earlier this month.

I wasn’t at this event, but the White House’s live streaming technology is fantastic so I got to follow along. Here’s some of what I learned:

  • Most people are not aware that disabled parents’ civil rights are violated frequently.
  • A parent with a disability is simply that – a parent. every person enters parenthood equally unsure of what the future will bring or how to fully care for their children.
  • Disabled people are used to figuring out how they can make something happen – while the rest of the world is telling us we can’t do that thing. (Moral of the story? Disabled people are going to keep creating families.)
  • The ADA (Americans With Disabilities Act) does a lot to protect parents with disabilities, since it requires systems like social services and family court to provide accomodations for equl access. It’s these systems, governed by individual states, that are violating the civil rights of parents with disabilities by not upholding the federal laws.
  • People with disabilities sometimes stay in bad or dangerous relationships because they know they could lose custody of their children if they leave or divorce their partner. Disability can be used as a weapon in a custody hearing; in states where a parent’s disability can be used as the only reason for removing their children, a nondisabled parent can simply point out the disability of the other parent and win custody of the children. Ignorance about disability means that child welfare workers and family court personnel don’t make a routine out of investigating whether the disabled parent is abusing or neglecting the children in any way before deciding they shouldn’t get custody.
  • Disabled parents often learn the most from each other. Frequently disabled people will turn to professionals – therapists, doctors, social workers – when looking for information on starting a family; these professionals usually don’t have the knowledge to help or advise them.
  • Disabled parents and caregivers need: More education for healthcare, social service, and legal professionals to prevent cases like this one, and more respect and acceptance from the general public to get people to think twice about staring at a blind mother walking her child to school and taking pictures of mother and child without permission.

For more comments about the forum, see the #PWDParents hashtag on Twitter.

There’s only been one panel archived so far. I’m really, really hoping the other panels were recorded and that they’ll be posted some time soon. There was a lot of important material that people need access to, a lot of voices getting a public platform for the first time.

Many people shared stories about ignorance and discrimination towards disabled parents. The fact that disabled parents were at the White House talking about their livs, and insisting on better treatment is exciting and amazing. It’s inspiring – as in inspiring to watch change being created, to hear voices of disabled people being given authority.

But, (and there’s usually a but, isn’t there?) I kept wondering about the voices we weren’t hearing.

Where were the voices of teen parents with disabilities, who will usually face double discrimination, assumed to be incompetent as parents based on their disability and their age?

Where were the voices of disabled parents living in poverty, who couldn’t have afforded to get to the forum, even if they’d wanted to? The unemployment rate for disabled people in the United States is twice that for nondisabled folks.

Where were the voices of disabled parents of colour, including First Nations folks?

According to Rocking the Cradle: “13.9 percent of American Indian/Alaska Native parents and 8.8 percent of African American parents have a disability.” Six percent of white parents are disabled.

The disabled parenting awareness and advocacy movement doesn’t reflect these statistics at all. The movement, as a whole, is very, very white.

As a white woman, and as a non-parent (that’s a word, yes?), I don’t have the authority to say if, or how, the needs and experiences of disabled parents of colour differ from those of disabled white parents. I know, from a personal conversation, that at least one black disabled mom thinks that important issues and stories from people of colour are being left out of these conversations. I also know that parenting and family, in general, can be complicated for many First Nations folks, because of the all-too-recent history of residential schooling. I know that “racism in the form of slavery and Jim Crow forms fully 83 percent” United States history and that this racism has huge and harsh effects on black children an their families. I know that being a member of more than one minority often makes people more vulnerable, which is why we need to actively make sure that people are given the opportunities to represent themselves, and why we need to remember that the stories we hear aren’t usually the only stories that need to be told.

What do we need to do to bring more voices, more perspectives, more experiences to the disability and parenting table? What do we need to do to give those folks’ experiences and voices equal weight once at that table?

The other missing voices at the White House forum were those of disabled parents’ children.

After all, this conversation is as much about children’s rights as it is about the right of disabled people to start and keep their families. As one panelist (and I wish I knew who it was, because she deserves to be publicly credited) said:

Children deserve to know that their families aren’t going to be ripped apart.

Further Reading

children of Disable parents Speak

Apr 202016

“It just feels like one more thing my illness is taking away from me.”

A friend who has several chronic illnesses had just finished telling me how she has to change her sexual practices for a while. She has a primary sexual and romantic partner, and several “friends with benefits” she has sex with occasionally. The casual sex, she told me, has to be put on hold for a while. Her doctors have put her on immune system suppressing medicine that makes any risk of contracting a sexually transmitted infection, even one as usually nonthreatening as herpes, dangerous for her. The doctors were adamant: Safer sex wasn’t going to be safe enough, unless she could guarantee that her partners were STiI-free, something none of us can know unless they’ve had two sets of STI tests come back negative and we can guarantee that everyone in the sexual relationship has been monogamous for all kinds of sex. Not so easy to do with casual partners.

As I listened to my friend, I wondered if her doctors could hear the desolation in her voice too.

Maybe you think giving up a friends-with-benefits arrangement isn’t as big a deal as, oh, having to quit your job for health reasons, or learning that there aren’t any more treatments to try, or…and you’d be right, mostly, for some people, some of the time.

Our sexualities are a big, big part of who we are, whether we’re asexual, polyamorous, or anywhere else on sexuality spectrums, and, for folks who are chronically ill, maintaining as much of who you are becomes a lifeline, one of the things that helps you feel human when you can’t rely on your body to do the same thing from one day to the next.

There are plenty of reasons for therapists, doctors, and other healthcare providers to make asking about sex and sexuality a more regular part of their practice with clients or patients. Sexuality, for most of us, connects with most aspects of our physical, mental, and, for some, spiritual health.

Knowing that we can share as much as we’re comfortable sharing of our feelings about and experiences of sex, as well as our broader interaction with our sexualities (including our past intimate relationships, desires around reproduction and parenting, histories of abuse, and more) with a healthcare provider who will use the information to help, not judge us can save folks a lot of worry and heartache, not to mention help protect physical health and get support around experiences of sexual assault or violent relationships. One of the biggest struggles people have around their sexuality,or how they express themselves sexually, is feeling sure they’re alone in their experiences or desires)

Giving permission for, or actively opening up the conversation about sex and sexuality is something doctors, therapists, and other healthcare providers need to be doing a lot more, with all their patients and clients, but especially with those who have disabilities or chronic illnesses.

This is true when the disability or illness afects a person’s day-to-day health (such as an autoimmune disorder) or when it has little to no impact on a person’s general health (such as blindness).

Most people’s sex and sexuality concerns, feelings, desires, or experiences will cover the same or similar ground, regardless of disability or illness.

There’s no “disabled sexuality” that comes along with having an illness or disability.

Disabled folks are kinky, asexual, willingly or unwillingly celibate, happily or unhappily married, polyamorous,
single, or any other sexual or relationship status you can think of.

But, there are a few things I think healthcare providers should know related to the experience of disability or chronic illness.

Here they are, in no particular order:

We need you to believe in our intimate relationships, because so many people don’t.

partners of disabled people frequently hear things like:

  • “You’re brave for dating her.”
  • “I guess you have most of the responsibility in your relationship?”
  • “It must be so hard taking care of him all the time. Who do you have to take care of you?”

Consider what Anna shares about her experiences being married to someone with physical disabilities:

Mostly, though, people who have seen Don and I together, who have watched us be cuddly, hold hands, and just be a couple together in public will often be shocked – shocked I tell you! – to find out that I’m not his caretaker or his sister, but that we’re married and have (whispers) sex. With each other. …
at least one ex thinks that Don can’t possibly be satisfying me so I should have sex with him instead.

For disabled people, the messages are often similar, though sometimes more subtle: We shouldn’t try to have romantic relationships, anyone who’s interested in us isn’t going to hang around for the long haul, that we have more important things to worry about than being in a relationship, or that they’ll be lucky to find anyone who can take care of them. All this is exacerbated by a prevailing attitude that disabled people are childlike, that impairment and disability make a person helples to make the right choices for themselves and protect their own safety (or make sound decisions about when we feel okay about taking risks).

When family or friends aren’t actively discouraging a disabled person from entering a romantic relationship, they’re weighing in on whether disabled people should only date other disabled people, or should seek out only nondisabled potential partners. Disabled people are often the most vocal, and most judgmental, on this question. There’s no consensus in these debates, except for how completely they ignore the obvious – that impairment status doesn’t tell anyone how they’ll connect to someone as a person, and that love, care, and connection are what most people look for in an intimate relationship. Some disabled folks might choose to date only disabled, or nondisabled, people, but that’s a deeply personal choice, not one, in my opinion,to be debated around the dinner table, or anywhere else.

Other people’s opinions can and do put a lot of pressure on a disabled person looking to start a relationship who doesn’t get support for that from their family. It can also put stress on a couple, if they feel as if no one respects the bond they have as intimate partners. When a visibly disabled and visibly nondisabled partner go out together, they’re rarely read as lovers or spouses. The visibly nondisabled partner might feel resentful about being mistaken, by servers in restaurants, or, yes, staff in doctor’s offices or hospitals, for their partner’s nurse, payed caregiver, or family member.

Developing a disability or chronic illness as an adult means changes, changes to body, changes to mind, changes to relationship, changes to sexual feelings, experiences, to the ways a person does sex.

Acquiring a disability or illness can impact relationships. patients and clients need their healthcare providers to talk about that, or at least raise the subject. Many people don’t know how to talk about sex and sexuality at the best of times, and with the stress of illness or disability onset, people may need support with knowing how to talk to a partner about the changes in their relationship balance and sex life,, or even with knowing how to grapple with their own feelings. Acquiring an illness or disability also often means that things like medicines, or physical therapy, or long-term disability benefits take priority, and patients can really benefit from their healthcare provider letting them know that the health of their sexuality and their intimate relationship (if they’re in one) are also important.

Sarah Smith Rainey’s book, Love, Sex, and Disability: The Pleasures of Care, is an excellent resource if you want to learn more about the role disability plays in relationships.

We need you to know that we’re just as likely to be interested in parenting,and to be good parents, as nondisabled people.

Disabled people are told, in big and little ways, that we can’t be parents. It’s a social habit (and a nosey habit) here in the U.S. to ask adults when they’re going to have children; the culture is one of active encouragement towards parenthood. Disabled people are often left out of this cultural habit, are assumed to not be parents, or are actively discouraged from parenting. I’ve heard that the disbelief sometimes goes so far as people asking a visibly disabled person whether the baby they’re holding is theirs.

All this takes an emotional tole, but also a legal one. Custody disputes are often settled with a simple mention of disability, with custody given to the nondisabled parent without investigating whether being with the disabled parent would actually be the best option for the child. Sometimes, it doesn’t even get that far, and babies are removed from their disabled parents at or shortly after birth.

Consider the case of these parents, who both have cerebral palsy or these parents, both of whom are blind. In both cases, the parents were considered incompetent because they couldn’t physically do parenting tasks the same ways nondisabled parents do them. These parents were essentially treated like children themselves, without any seeming awareness that living, as they do, in a world literally not built for them, they have more than likely developed a lot of resilience and creativity. This isn’t about disabled people being superhuman; it’s about what skills people develop to survive.

There’s a shocking, but not surprising, lack of knowledge about how disabled parents can and do care for children – using adapted baby care equipment, for example – often resulting in child welfare workers removing the child, forcing the parents to prove their abilities to parent. Most new parents learn as they go, and requiring a higher standard of proof from disabled parents is unfair, and not necessarily in the best interests of the child.

There’s really no excuse for this ignorance. According to The most recent estimates, 4.1 million parents in the U.S. are disabled, and have a child under 18 living with them. In other words, disabled parents aren’t rare, and most of them have been able to parent their own children just fine.

Disabled people who want to parent need to know that they have a healthcare provider or therapist on their side, someone who can educate them about parenting in general if they need or want help, offer information about parenting as a person with a disability, and be prepared to advocate on their behalf if their parenting is interfered with for reasons of disability alone.

To learn more about how disabled parents care for children, visit Through the Looking Glass and Disability, Pregnancy, and Parenthood.

To read findings (and recommendations) on the current state of parental rights for people with disabilities, check out Rocking the Cradle, a report from the National Council on Disability.

We need you to know that many of us have,or will, experience abuse, sometimes in healthcare settings.

What do you do when your abuser is also your care provider, someone who bathes you, or dresses you, or whose assistance you need if you want to leave the house or communicate with other people? What do you do if people constantly tell you not only how good a person your abuser is, but how courageous and wonderful they are for helping you? What do you do when your abuser doesn’t treat you like a human being, but neither does much of the rest of the world?

This is the reality for many disable people experiencing intimate partner violence or other forms of abuse.

are disabled people at greater risk of abuse than nondisabled people? The research we have on this is mixed, but results from the Disability and abuse Project and Baylor College of Medicine both show that disabled people who do experience abuse are likely to have experienced multiple incidents. Baylor’s research showed tha disabled women experienced abuse for longer periods of time, and from a greater number of abusers than did nondisabled women, even though the actual percentage of disabled and nondisabled women who reported physical or sexual abuse was the same. The Disability and Abuse Project found that more than 90% of the disabled people who reported having experienced abuse reported experiencing abuse multiple times.

The numbers are hard to pin down, but the concensus is that abuse is present in many disabled people’s lives. Participants in this study identified abuse as the most significant health risk they faced. All of this is compounded by physical and social barriers in the way of disabled people in abusive situations asking for and receiving help.

It’s not just disabled adults at risk of abuse.

Many children with disabilities are at higher risk of abuse because they come into contact with more adults who can claim the right to take them into private spaces without being asked questions. The authors of The Ultimate Guide to Sex and Disability suggest that disabled children’s exposure to a greater number of people than nondisabled children are usually exposed to – medical specialists, nurses, physical, occupational, and speech therapists, educational assistants and support workers – accounts for the higher incidence of physical and sexual abuse they, as a group, typically experience.

This resonates with my own observations. I can personally count on the fingers of one hand, without thinking too hard about it, friends and acquaintances who were abused by people who were supposed to be teaching or caring for them in a disability setting. It’s as heartbreaking as it sounds.

None of this is meant to minimize the abuse nondisabled children and adults experience, or to imply that all disabled people have a history of abuse.

But, therapists and healthcare providers do need to pay attention. You might be a disabled person’s first, and only, line of defense to cope with or get out of an abusive situation. Your patients and clients may also have deep and complicated histories of abuse. Please, don’t be afraid to ask.

We need you to know what travelling through the world with a disability is like, and to make sure we don’t have that experience while we’re in your office.

But, this isn’t about sexuality, you’re probably saying.

If your disabled clients are going to trust you enough to talk about sex and sexuality, we need to feel safe in your office. It means helping you understand the disability-related stresses we might b (scratch that: that we’ll probably be) carrying into our appointment with you, whether we’re seeing you for a routine physical, or for grief counselling, or to get forms fille out that will make our lives as disabled people easier.

The points below just scratch the surface of disabled people’s experiences in our world. I’m putting them here as a mini road map, not a technical manual.

Disabled advocate Dave Hingsburger writes about the social exhaustion many disable people feel after a day out in public. And in this post he’s just observing routine disability-related conversations. These don’t include the highly emotionally charge discussions with strangers who walk up to us, out of the blue, and ask to pray with us, or being stuck next to someone on the bus who wants to tell us all about all the disabled people they’ve known, or responding to people’s anger because we don’t fit their definition of a disabled person (for example: a wheelchair user who stands up to take something off a high shelf, or a blind person carrying a cane who reads a print sign). They don’t include the condescension, or the gushing claims of how much they admire us.

They don’t include the random, uninvited pats on the head or shoulder, or back, or hand from strangers.

They don’t include having one’s arm, or mobility aid, grabbed without permission by someone who “just wants to help” but instead scares us half to death, or throws off our already unsteady balance, or disorients us by dragging us across a street we never intended to cross.

For visibly disabled people, the interactions with strangers can be constant, and tedious, especially so for the congratulations or praise for doing everyday activities

  • To be spoken to directly, even if we’re with a visibly able person, even if that person is, in fact, speaking for us.
  • To be asked what kind of help we need; to not be touched until we say so.
  • To be spoken to in a respectful tone of voice, addressed by our name, not with terms of endearment. To not be treated like children. (For that matter, most of us could stand to treat children more respectfully anyway.
  • If you want to know how we do any sort of every-day task,such as bathing or dressing,I suggest:

    • Ask Yourself: Do I need to know this for treatment purposes, or to satisfy my curiosity. If the former, say so when you ask the question. If the latter, Google is your friend.
    • If you do want to ask to satisfy your curiosity, write yourself a note and ask at the end of the appointment. This way, the patient or client spends appointment time talking about what they need to talk about, not explaining how they put their socks on in the morning.
    • If you do decide to ask about the socks, or anything else, think about how you ask. Here’s an example: I’m blind. When I first met my primary care physician, she asked me what the best way would be for her to send my test results. She did not automatically asume, as others would, and have, that someone would read the results to me. This went a long way towards helping me trust her.

     Resources  Comments Off on Four Things Healthcare Providers Need to Know About Sexuality and Disability
    Mar 312016

    News and views on sex and disability for February and March.

    Here at Ready, Sexy, Able

    Sexual Abuse, Sexual Rights, and Intellectual Disability: A Messy Political Stew

    Sexual abuse policies at institutions for people with disabilities don’t usually make it into the news, so when they do, that is news. Here, I unpacked what was said, and not said, in news articles about the Montana developmental Center, and looked at the whole picture from a disability rights point of view.

    Imagine a world where you don’t get to touch or be touched, or where you’re separated if people catch you having sex you want to be having, where the people don’t ask you if you wanted that sex, or intimate touch, or whatever it was you were doing and whatever that touch meant to you until after they made you stop, and then they’re only asking you to see whether they need to take a sexual abuse investigation to the next level.

    Read the rest of the post

    Illness and Disability? They get along with sexuality just fine.

    Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

    Read the rest of this post, and click through to a fun Podcast discussing everything from Scottish fiddle music to chronic illness, disability, and sexuality.

    Sexual Health And Disability: Are we afraid to talk about it?

    There’s something we’re not talking about.

    There’s something the news articles and personal essays, the films and poetry, the sexy photo spreads and opinion pieces about sex and disability are leaving out – safer sex and sexual health.

    To be fair, most mainstream discussions of sex and sexuality aren’t talking about sexual health either, at least not in ways that encourage people to take care of theirs.

    Read the rest of this post, including a link to some disability-friendly sexual health tips, here.

    Dating and Sexual Expression in the News

    These articles all highlight, I think, what happens when you add the experience of disability to insecurities around dating and sex that most people feel, in some way, at some point in their lives. There’s no one way a date or sexual experience is supposed to go, and there’s no one way people of a particular age, or gender, or experience level, or anything else, experience their sexuality. When we’re talking about “sex and disability,” it’s usually the disability, and people’s reactions to it, that make the experience of sex and dating unique. Maybe, if we can change cultural attitudes enough, we’ll get to a point where nondisabled people won’t turn down a first date with a disabled person because they don’t want to get too involved – it’s a first date, after all! – not to mention a point where people will shed prejudices about what it’d be like to be in a long-term relationship with a disabled person. Maybe we’ll get to a point where communication during sex, not always wanting or needing to do the same sexual things, a shedding of the idea that orgasm, or “man on top” or anything else other than desire and creativity are required for happy sex, all of these things won’t seem like disability adaptations.

    Disabled dating on Tinder: ‘People ask if I can have sex’

    Last month, Tinder users took to social media to expose the discrepancy between their Tinder photos and what they really look like – think flattering angles, body-con dresses and blow-dries, versus double chins, coffee-stained T-shirts and bed hair. Unknowingly, a fleeting trend pointed to the dilemma that disabled online daters routinely find themselves in: do I show my disability in the photo? And, if not, or for the many people whose disability isn’t visible: when do I tell someone I’m disabled?

    Read the whole article here.

    Give chronic pain away

    There’s this paradox of being actually fragile while having trouble facing my physical vulnerability as a reality when I’m playing or having sex. I’m pushing back on chronic pain all of the time. Maybe sharing my body and myself fully is being able to let my partner absorb some of my fatigue and my fear of being fragile without feeling guilt or shame.

    I have to understand that my lover checking in about my comfort and pain during sex is not an attack on my limits, but a recognition of me.

    Read the rest of this post here.

    Price of Intimacy: The Time I Hired a Sex Worker

    I sent David a cursory email, telling him that I was interested in using his services, but that I had never done this before, that I was nervous. I also casually explained as best I could that I lived with a disability and used a chair. He emailed back some hours later, letting me know that he had experience working with clients with disabilities. David wrote bluntly: “If I’m unsure of something, I’ll just ask.” It was a refreshing change from all the guys who tripped and tumbled over their discomfort.

    Read more about Andrew’s interaction with David. Hint: It has a happy ending.

    Dating With A Disability

    Living with a disability often means facing inaccurate assumptions; dating with one is no different. People sometimes assume those with disabilities only date others with disabilities, for example, and others believe that “if you’re disabled, you better hook up with someone who’s not because it will just be too hard,” says Julie Lynn Williams, an associate professor in Wright State University’s School of Professional Psychology who studies disability issues. There’s also a stigma that people with disabilities are asexual, or that they should be so they don’t reproduce, Williams says.

    Read the rest of the article for a sweet story on disability and romance.

    How Does It Feel? The Question I Wish You’d Ask Me as a Queer Man With Disabilities

    Sex and disability feels scary. I have given up counting the times that I have held my breath after I’ve let a man in my apartment. I watch him come in, and I watch him look at the realities of disability that fill the space; commode chairs, ceiling tracks, portable lift devices that have been specially designed to meet my needs. I watch his eyes checking for the tiniest hint of doubt in them, ready to give him an out should he need it. I sit there in those milliseconds that tick by like millennia, hoping that he doesn’t leave, that he won’t want to go away from here, from me, from what is yet to come.

    Read how the mechanics of sex with a disability are only the teeniest, tiniest part of the whole sexual experience.

    The Disability Experience

    Gimp At The Porn Awards

    Everyone I talked to was engaging and super-friendly. Not overly friendly, like those with fake sweet tones dripping from their voices when addressing those with visible disabilities. I can’t hear well, but I can hear that grossness. I find ableist tones are imbued with overt sweetness, assumptions of lacking cognition, dismissive, or a mix of all that fun! Aside from an academic I chatted with, not a single person spoke to me like I was an infant or something to be placed on a pillow to be looked at. People interacted with me like a fellow human. It was remarkable. It is also quite sad to even have to note this truth; it shouldn’t be rare yet it continues to be.

    Read more about Bethany’s experience at the porn conference.

    Radio talking Disability & sexuality, the social model and disability pride

    This is well worth a listen! Access note: There is no text transcript of the interview.

    I did a little interview on Clementine Ford’s Misandry Hour and talked about Disability & sexuality, the social model and disability pride.

    Radio Interview on sexuality and disability and disability pride with activist Jax Jacki Brown

    ‘Pretty Cripples’ and the people turned on by disability

    In a world that constantly tells us anything out of the realms of “normal” is undesirable, I’d be lying if I said I wasn’t impressed by the idea that there are people out there who would happily love and accept every little bit of me, especially the bits that I’ve always considered flawed.
    But, as I started to come face to face with people in the devotee community, I felt wary.

    learn more about disability devoteeism.

    Disability and Sexual Intimacy

    Fantastic to see an independent living center offering workshops on sexuality!

    Disability and sexuality is not a subject that is at the top of the list of the enquiries we receive at ILC in Nedlands or at ILC Cockburn. Talking to Occupational Therapist colleagues and Carers it seems that the subject can be perceived as a taboo subject or sometimes it can be the white elephant in the room, it’s there but who mentions it? Should it be mentioned? Who should mention it first?

    Read the rest of this post here.

    Marriage and Parenting

    I Didn’t Want To be a Burden on Our Minimoon

    My beautiful husband didn’t take to the Internet to complain that my pain ruined his weekend, but actually wrote a loving Facebook message about how amazing our accommodation was, that I am sore but it’s nice to spend time with me doing nothing. It was so uplifting and reassured me he had a good time and I’m not a burden.

    Read more about how Carly and Adam celebrated their marriage, in disability-friendly style.

    Parenting with disability. What it’s really like.

    Children are resilient and adaptable.

    Besides working around not driving, my kids have always lived with the knowledge that sometimes they can’t touch me.
    My family deals with my disabilities and associated disruptions pretty well. It is hard not to see myself through the eyes of other parents, or the eyes of my 14-year-old’s friends, when they ask my why his mom doesn’t drive and then, by association, “What’s wrong with her?” And he has to explain.
    I hope my kids aren’t embarrassed. We live blocks from the schools, doctor, dentist, library, bank, and a couple restaurants. I walk everywhere, when I’m able. My husband works at a flexible job. I work at home. That’s how I do it. A lot of help and careful management of time and resources.

    Learn more about how this family adapts to Mom’s disabilities.

    The Disabled parenting project
    This is a new online space, launched in March, that seeks to bring disabled people together to discuss and share resources around parenting as people with disabilities.

    The DPP also seeks to inform social policy through the development of resources, created by and for the disabled parenting community, and to promote social justice for disabledfamilies.

    Visit the Disability Parenting Project

    Mar 172016

    It’s not every day that policy changes around sexual abuse reporting at an agency for people with developmental and intellectual disabilities are covered in that agency’s local newspaper.

    What’s not unusual is the amount of stuff there is to unpack around how disabled people’s bodies, sexualities, even our very lives are treated. You can double or triple how true this is when it comes to talking about people with intellectual or developmental disabilities.

    This reporting misses just as many issues and questions as it uncovers.

    Below, I unpack some of these issues and fill in some of the missing pieces that need to be in this conversation.


    Imagine a world where you don’t get to touch or be touched, or where you’re separated if people catch you having sex you want to be having, where the people don’t ask you if you wanted that sex, or intimate touch, or whatever it was you were doing and whatever that touch meant to you until after they made you stop, and then they’re only asking you to see whether they need to take a sexual abuse investigation to the next level.

    Even if all of this is happening for a reason – because you or the person you were with has a history of being abusive and the people who take care of your physical needs are tasked with making sure you or they don’t hurt anyone else, or if you or the person you’re with has been abused and the people who take care of your physical needs have been tasked with keeping everyone safe – living this way still isn’t going to feel comfortable or nurturing.


    The Story: The Montana developmental Center has updated their sexual abuse investigation policies to meet federal standards. Before the update, all sexual contact between clients was assumed to be nonconsensual, and was treated that way. Clients found engaging sexually with each other were separated immediately and a sexual abuse investigation was set in motion. After the update, sexual contact between clients still isn’t allowed, but if clients are caught having sex, whether or not they consented to that sex will factor into the investigation. If it’s found that a. Everyone involved in the sexual activity agreed to it. and B. Everyone involved was intellectually capable of consenting the investigation wouldn’t go any further.

    Yes, it’s commplicated.

    It’s even more complicated because the guidance clients get about what is and isn’t appropriate behaviour doesn’t match the policy around what is and isn’t abuse. Clients are told that no touch is allowed between clients. This leads to confusion since clients report nonsexual touching because they’ve been told they’re supposed to. The systems in place don’t require opening an abuse investigation for nonsexual touching.

    I can’t help thinking that this confusion over the expectations of clients would make a lot of clients feel unheard, if they go to report something, because they think they’re supposed to, and only then are they told it’s not a big deal.


    About touch: I wonder if, instead of restricting and monitoring it, in not allowing touch instead of allowing it under supervision…might this not be interfering with the clients’ abilities to grow and develop new ways for understanding and relating to the world?

    Research has shown that touch can be a great vehicle for sharing and understanding emotions – though I don’t agree that these findings support that men are from Mars and women from Venus; there are plenty of other reasons for gender differences in research results.

    There’s also research to support that touch is crucial in emotional regulation, something especially important for folks who may have trouble with verbal communication. This reminds me of a story I heard about a woman who worked in a group home for adults with intellectual disabilities. One of her clients had the nasty habit of hitting other people. Somehow, I’m not sure of the details, this staf member figured out that if the client received a backgrub every day, he was much more relaxed and much less likely to hit people.

    Sure, this was controlled touch,, in a regulated situation, done for a specific purpose.

    I can’t help wondering though if allowing clients to touch (nonsexually) under supervision couldn’t be highly beneficial as well. There seems something so cold and clinical about living somewhere where you’re forbidden to touch at all, instead of being encouraged and taught to touch in healthy ways.

    Sometimes, the expectation that a person with an intellectual or developmental disability won’t be safe doing something is more harmful than finding ways for them to do that thing safely. This is especially so for basic needs that so many of us take for granted, such as the ability to spend time alone. One of the stories shared by the social worker who presented this workshop, was about a young man who was deemed so out of control he needed to have two support workers with him at all times. Yet, the intensity of his behaviour revved down once a way was found for him to safely spend fifteen minutes alone every day.


    I do wish that this reporting on sexual abuse policies had also included an acknowledgement of the broader issues around the sexualities of people with intellectual or developmental disabilities. People with intellectual disabilities are often thought of and discussed as if their sexualities either don’t exist, or are wildly out of control, and referring to sexual abuse, actively minimizing desires by explaining that no sexual activity is allowed, reinforces this either/or of helplessness or harmfulness.

    To be clear, sexual abuse, whether being an abuser or being a victim, doesn’t have anything to do with sexual rights, but whenever we acknowledge that people can or may be being consensually sexual, we need to (or at least I think we need to) recognize that people with intellectual or developmental disabilities are just as likely to have fully formed sexualities of all diferent shapes and expressions as anyone else, and just as likely to find ways of acting on these sexualities as to be the victim or perpetrator of abuse.


    This is the point where I stop to share that this piece is dificult to write. The mess of responsibilities, rights, care needs, community resources, feelings, behaviours, institutional histories, power dynamics – it is a stew, and not the tasty kind.

    It’s painful to acknowledge that people with developmental disabilities, a population we’ve done so much wrong to as a society, are also capable of doing harm to others, and that, to keep them and others safe, their interactions with others may need to be limited.

    Some people with developmental disabilities are sexual abusers. Treating and working with this population is a big part of what the Montana Developmental Center does. Not easy stuff, by any stretch of the imagination.

    There are people who are a danger to others. There are people who have trouble understanding personal boundaries, or even with understanding which of their actions will hurt others and which won’t. There are Some people with intellectual or developmental disabilities express really strong feelings through violent behaviour, and don’t understand how their strength affects others.

    Some folks, because of developmental delays, never learned, in ways they could understand, how to interact with other people, or how to manage their emotions, the way other children (mostly) do.

    People with intellectual or developmmental disabilities are, by and large, not much different, in the grand scheme of things, from the rest of the population – which means that some folks are or will be violent, and will probably have a harder time hiding those violent behaviours than many people who are, or can pass as neurotypical do. Neurotypical folks just (usually) conceal their dangerous behaviours better.


    Dave Hingsburger has worked with people with developmental or intellectual disabilities for over four decades now. He’s been an unfailing advocate for the rights of people with developmental disabilities to express their sexualities in all ways that make them happy and keep them, and others, safe. Dave is also very clear that some people with developmental disabilities are violent, and that these violent behaviours need to be managed, and prevented, for the safety of everyone who lives and works with the violent person.

    There are precedents for respecting the sexualities of people with intellectual disabilities and actively preventing abuse.

    Organizations have developed models for honouring these sexualities while while providing the needed level of “protection from harm, abuse, and exploitation.”


    I wish the article about policy changes had also explored what changes are being made to hold everyone accountable when there are cases of staf sexually abusing clients. Staff abuse of clients happens far too frequently in institutions – the Montana Developmental Center will be closing soon, partly because of high rates of abuse.


    The people of Boulder Montana, where the Montana developmental Center has been located for over a century, feel angry and betrayed by its closing. The community is furious that a prime source of income and employment is being taken away from them. The people in this town have every right to fear these things, but this article is disappointing for its lack of discussion about why the institution is closing, beyond several interviewees’ firm conviction that the state should have considered the town’s needs in this decision. There’s no mention in the article about the history of deinstitutionalization, its pros and cons, or what community placements for folks with developmental, intellectual,or psychiatric disabilities actually look like.

    There’s a lot of material in this article that demands to be ripped apart from a disability rights perspective, but I’ll just highlight three points that I think are especially indicative of general attitudes towards people with intellectual disabilities.

    The Rev. Lowell Bartels, who leads the Tuesday services at the nondenominational Good Shepherd Church at MDC, said he fears for the future of those in his congregation.
    “We have to keep in mind that these are adult bodies with children’s minds,” he said, fearing where they may end up if they don’t make it in the community setting. “They are going to go to jail.”

    No, and no, and an extra dose of no on top! Calling people with intellectual disabilities children in adult bodies is outdated, and wrongheaded, thinking.

    Mental age refers to how a person does on standardized tests. That’s it.

    Acording to The Arc:

    The mental age only refers to the intelligence test score. It does not describe the level and nature of the person’s experience and functioning in aspects of community life.

    I’d add that when we evaluate people based only on how well they do on a standardized test, or how they communicate, or even how they relate to the world around them, we forget that there are other senses that we all use to learn about and understand our own experiences and what happens around us, and that just because an adult with an intellectual or developmental disability can’t tell us what’s going on in their minds, or if they can’t communicate memories in ways the rest of us think are logical, doesn’t mean that they don’t retain feelings, sensations, experiences from how ever many years they’ve been on this planet. A thirty-five-year-old is going to have way more of these stored up than will a five-year-old. We need to respect that.

    If an adult with a developmental disability chooses activities that are usually more suited to a child, that’s their choice, and has way more to do with what their unique personality and combination of skills and abilities allows them to enjoy, than with them having a “child’s mind.”

    We have to stop thinking of and treating adults with developmental disabilities as children

    From a nurse who used to work at this institution:

    “When I worked there, I loved the people I took care of,” she said.

    However, she said, she had her arm broken once and jaw broken twice by clients.

    I am so deeply sorry that this nurse went through the physical pain and emotional trauma of being harmed by her patients. That’s a scary fall-out that can happen when people work in healthcare, with any sort of patient or client. I’ve met several former nurses over the years who had to leave direct care after sustaining permanent injuries inflicted by patients. To be sure, the risks might be higher, more concentrated, in a space that works with people who already have a history of violence.

    But, try this on for size: IN a place where abuse and mistreatment happens, where the clients have emotional or verbal communication issues, is it really surprising when clients act out violently? If you’ve seen abuse,or know it’s happening,, or have experienced it, and you feel vulnerable, and you don’t feel like you can tell anyone, and you don’t know what to do when you have emotional outbursts (the way most of us do), what else are you going to do but lash out? No, violence is not okay, but the fact that it happens in the course of care should make us look at the bigger issues, and should also not make us assume that people with intellectual disabilities are uncontrolled and a danger to the community.

    Placing this nurse’s experiences near the beginning of this article sets us, the readers, up to think that the people living in the town are in in greater danger if the institution closes and its clients are transferred to living in the community. This impression is strengthened by the lack of information given about just what community living for adults with intellectual and developmental disabilities can look like, what kinds of supports they’ll have, how their emotional needs and behavioural histories will be managed, and so on.

    A current employee at the institution says:

    …the clients “do more in their personal life than I do in mine.”

    Ah, but Sir, you have choices, way beyond whether you have chocolate or vanilla pudding for your evening snack,or whether you go to the movie theatre or the bowling alley for group outing. Regardless of how much they need the care they’re receiving at this center, none of the clients chose to live there. That’s a basic personal freedom that was denied to them. Having that happen is way bigger than who has how much of a personal/social life.

    It feels really awkward that this staf member felt like he had to prove something by telling us he doesn’t have much of a personal life. It feels even more awkward since he is then reported as saying:

    And as for the clients, “they grow on you.”

    Well, I’m glad we got that straightened out.

    In fairness, we don’t have access to the context for this quote. Maybe it was referring to another comment or question that was left out of the article.

    Sure, it’d be an adjustment to work around people who don’t communicate the same ways other adults do, who are sometimes violent or unpredictable, who have interests and hobbies we usually associate with children. But, if we approach any group with basic respect, they shouldn’t have to “grow” on us, except for the usual personality conflicts everyone has.

    Further Reading

    The Arc: Sexuality Position Statement

    The Right to Community Integration for People with Disabilities Under United States and International Law

    Already Doing It: Intellectual Disability and Sexual Agency

    Feb 292016

    The last day of February is Rare Disease Day.

    Today I’m thinking about what I’ve learned from chronically ill friends and acquaintances, about the ways most chroniclly ill people’s lives continue, through all the treatments, all the doctor appointments, the sometimes daily medical tests, the waiting, the occasional or constant threat to life or current level of wellness. I’m thinking about the ways relationships and sexuality get shoved to the side when we talk about young people and adults with chronic illnesses, and about how that doesn’t always reflect people’s desires or lived experiences.

    Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

    Going through treatments and surgeries might make you think you’re less attractive, or make you feel totally crappy about yourself, but those experiences don’t make your sexuality disappear. Feeling like an object because no one can figure out how to help you feel better, and because the most touch you get in a day is from medical instruments and hands that see you as an object of curiosity, not a subject of love, might make you feel less human, less sexual, but that’s you relating to your sexuality too – and you feeling less desirable doesn’t mmean you’re any less desired.

    Having an illness – or two, or three, or six – doesn’t make you nonsexual. It doesn’t make you asexual either, unless that’s where your personal sexual identity lies.

    To get all clinical about it, Sex remains an important contributor to quality of life in many patients with chronic illness and their partners.

    Not surprising, but it also looks like healthcare providers aren’t talking about sexuality much. Why not? This researcher thinks one of the problems might be that:

    Patients feel that if sexual health were important, their healthcare provider would raise the topic during the visit. At the same time, the healthcare provider feels that if it were important to the patient, the patient would bring it up. So, either side is waiting for the other to talk about it first and ultimately, nobody brings it up.

    Sexual health isn’t just whether you have an STI, or a yeast infection, or are worried about fertility – though those things are just as important, and usually more important to talk about when you’re ill; sexual health is about your whole sexual self, and changes in desire, sexual arousal, or how your body physically responds to sex, how your illness affects your current relationship or dating prospects, has just as much to do with your health as anything else.

    You might have to do sex and intimate relationships diferently. Having sex with yourself or a partner might get shoved lower on the priority list. You might want to do sex differently because you need it to do different things for you. Maybe you hold onto a sense of vibrancy and aliveness by diving headlong into the world of online dating, or maybe you make sure you wear something every day that makes you feel attractive. Maybe you use sex as a way to care for your partner, because they’re caring for you in so many other areas of your life.

    Maybe you make sure you and your beloved are still connecting by scheduling dates at the hospital coffee shop an promising each other that, for one hour, you will not talk blood cell counts, bills from the insurance company, or which doctors have the bedside manner of a slug.

    You might have to learn how to do sex diferently, but it’ll also help to know that 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. Sexuality is part of that daily life you might really be craving more of as you cope with illness.

    I, I don’t talk about it {sexuality} much, but I do feel that it’s important to talk about it on here because people need to know that it’s okay, and I had a recent experience that was just perfect demonstration of this, and that is that you can be lying in a hospital bed with tubes all over you, and your partner can walk in and see your brainwaves on the screen and be like, let’s conduct an experiment! And right there in front of the camera while they’re watching you for seizures, he can just grab you — in the hospital bed and be like, you are still totally hot to me.It was. It was pretty badass. It was, it was one of those moments where you just kind of, you don’t think of yourself as sexy. You think of yourself, we societally condition ourselves to believe that when you are in a hospital or when you are facing a chronic disability or illness that you’re not sexy.

    — Sassy Outwater

    That’s an excerpt from an awesome podcast on everything from seizure disorders, to Scottish music, to sex and disability, as lived experience and in romance novels. I think it speaks to the relationships between illness and sexuality better than any research or theory ever could.

    Living with illness or disability isn’t one-dimensionally just about that illness or disability, and I think this Podcast shows that really well, with Sassy talking about music (AKA her work), books (things she loves, and also her work, and disability, with and without the sexy parts. There’s even a full transcript for people who can’t or don’t want to listen.

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