Feb 252018
 

Everybody’s getting in on the “let’s publish sex and disability articles” deal these days.

Query Google (or your favourite search engine) for “sex and disability,” and your top results will almost always be from major online and print publications, and will date from the last four or five years. I’m not complaining about this. It’s fantastic that sexuality and disability, separately and together, are getting so much air time.

But like all good things, we didn’t create this conversation from scratch. Today’s voices aren’t the sexuality and disability pioneers the clickbait headlines want us to think they are. Years, decades really, of confabs in living rooms, at conferences, and later on online bulletin boards and chatrooms got us to this point.

Some of these conversations are lost in people’s memories. Some are hiding in obscure, or out-of-print books. And then there’s the Internet, the decades-old Internet with all it’s treasures. Remember, people were getting online in the early 90s, and I’d argue, with no evidence whatsoever, that disabled folks were some of the first to realize how powerful online spaces would be.

So, yes, the Internet, full of treasure – sometimes buried, sometimes obvious, sometimes forever lost to the ubiquitous “404. Page not found” message, which usually shows up when there’s a particularly enticing title and meta-description.

I’ve been digging these online and offline gems out for a while now, and it’s time for me to stop hoarding and start sharing. (though come to think of it, treasure-seeking pirates are usually portrayed as disabled…one eye? artificial leg? Yup, disabled.) So, maybe hoarding is just what we treasure-seekers do.

First stop: FWD (feminists with disabilities) for a way forward

FWD/Forward published essays, interviews, and opinion pieces on feminist and disability topics, “in response to the lack of disability content in online feminist spaces.” They were live from 2009-2011, and closed due to lack of community support. It takes more than passion and commitment to keep a Web site running.

Fortunately for us, some generous soul has archived everything and is keeping the site live…for which I’m incredibly grateful. I was pretty active online when FWD/Forward was happening – and I had no idea they existed. There really aren’t words for how sad this makes me. I could have learned a lot about writing and advocacy from these folks. This was important work being done, and valuable people to know.

I can, and do, get lost in this site for hours. I’ll probably share more favourite pieces over the coming months, but, first, this excellent introduction to disability and sexuality.
Disability and Sexuality 101, or, Do disabled people have sex?

The reason PWD aren’t considered as sexual – particularly “visibly” disabled PWD – is that the idea of “the perfect body” as the only sexual body dominates popular discourse. Additionally, we have the stereotypes of PWD as pathetic or stoic, far removed from the sexual. Not to mention the fact that disabled people tend to be shoved away from the general public. This idea is not due to some inherent aspect of disability that negates sexuality, it’s just bigotry. The lack of recognition for PWDs’ sexuality has meant, less so in recent years, that a lot of PWD aren’t given appropriate sex education. Without proper sex ed, it’s harder to take charge of one’s own sexual life and body. This lack of information has its role in enabling the high rates of abuse against PWD. There is a lot of horrific policing of the bodies and sexuality of disabled women in particular, as you’ll read about on this blog in less 101-type discussions.

And this…this is one case where you do want to read the comments. There’s so much good, honest, thoughtful dialogue here. At the risk of sounding like an old fuddy-duddy, there’s a strong feeling of connection I just don’t get from so many online conversations today.

If you have a sex and disability resource you’d like to see get more attention – a favourite article, book, academic paper, or what have you, hit the contact form at the bottom of this page and send it my way, please. Remember, I’m looking for older, or more obscure material – let’s say anything more than five years old.

Jan 052018
 
A magnifying glass, for looking closer at what's right in front of us.

I wrote a while back about the multi-layered and inexcusable discrimination many disabled parents face.

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

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.

But, expecting and new parents with disabilities usually face doubt, or invasive questioning, or inadequate services, or loss of child custody, or months- or years-long court cases fighting for parental rights (usually while the child lives in foster care). These actions are taken, we’re told, to protect children. But these situations are usually about disability, not about child welfare. They’re about assuming that disabled adults themselves aren’t any more capable than children. They’re aboutthe lack of education legal, medical, and social service professionals get about disability, and about how that lack leaves room for personal biases. They’re about these same professionals knowingly or unknowingly setting disabled parents up to fail the “tests” put to them to judge their parenting fitness, by not providing parenting information in accessible formats (Braille, audio, large print, plain language) or by not providing accessible equipment (such as a changing table with the right set-up for a wheelchair user needs to reach everything and keep the baby safe).

Now, a new law in Illinois spells out the rights of blind and vision-impaired parents.

Under this law, social workers, lawyers and judges (and anyone else involved in child custody proceedings) won’t be able to use a parent’s blindness as evidence that they should or shouldn’t be given custody, and blindness cannot be a factor in evaluating a person’s fitness to become a foster or adoptive parent.

This law establishes “procedural safeguards that require adherence to the Americans with Disabilities Act.”

Yes, you read that right. A state law was drawn up and enacted to make sure a nearly 28-year-old federal law is followed. Not just that, but the Americans With Disabilities Act protects people with many kinds of disabilities. This law focuses only on blind parents.

Why not more inclusive? I don’t know, except to guess that whoever proposed this law has a personal stake in making sure that blind parents aren’t discriminated against. That’s awesome, but I wish they’d been more forward thinking to include all recognized disabilities, or at least some categories, such as sensory and physical disabilities.

As it stands now, this extra state protection applies to only a small part of the disabled parent population. If you’re blind, and you’re an Illinois resident, you’re good, but, knowing that disability discrimination touches everyone, and that it can have disastrous consequences when children are involved, I can’t help wishing that the time and effort taken to draw up extra legal protections couldn’t be used to create protections that are more wide-ranging.

On the hopeful side, perhaps the passing of this law will raise awareness among policy-makers and activists.

***

For more data on parents with disabilities in the United States, check out this post I wrote about the 2016 White House Forum on Parents With Disability. (Just an aside: It’s hard to imagine this forum happening in the current political climate.)

Or, see why I included parenting in target=”_blank”>this list of “need to know” data for healthcare providers.

Sep 132016
 

A graphic of a projection screen with a pie chart.

Projection Screen With Pie Chart

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.

Takeaways:

  • 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”

Feb 052016
 

Of the five sex toy stores I’ve personally visited over the past 15 years, only one had a flat entrance.

Of those five, only three had employees who didn’t respond to me as a visibly disabled person with obvious anxiety, and, in one case, hostility.

Sex toys – It’s one of the first things people think about when they think sex and disability – if, of course, they’ve managed to get past the “OMG disabled people? Sex? I think I have the vapours!”

For people who follow online media, anyway, the idea of people with disabbilities being sexual creatures is getting more familiar, and sex toys tend to feature in those narratives.

For example:

There’s a great reason for this. Toys can make sex play more physically pleasurable for people who have spinal cord injuries or other reasons for genital nerve damage. Or, they can help a person who has chronic pain, or limited mobility (or both) reach their butt. Or, they can help partners do the sexual thinggs they desire but that their bodies won’t allow. Or…the list has no end.

How do folks with disabilities get their hands on sex toys in the first place? Generally, the way anyone else does: stores, online, or cobbling something together from the kitchen drawer or bathroom cabinet. ON the surface, it’s easy-peasy. Another But, a lot of stores still aren’t physically accessible to folks with mobility impairments, with steps at the entrance or inside, no automatic doors, narrow aisles, and more. Some stores don’t keep sample versions of each product on the shelf for people to handle. At the stores where they do have all sample products out for customers, you can literally glance at, or hold, or sniff dozens of dildos (or anything else you’re looking at) to get an up-close-and-personal sense for which one is most likely to work for you.

As with anything, you’ll really need to try the thing before you know for sure if you’ll like it, and you’re not allowed to do that until you pay up!

Having this large display of products right there can improve everyone’s shopping experience, but it’s virtually vital for folks who can’t see to get a sense of the depth and breadth (no puns intended here) of what’s out there. It’s also pretty crucial for folks who need to be able to tell if their hands, let alone any other body parts, can use the toys.

Shopping at sex toy stores is unlike most other shopping experiences.

It’s fun. It’s sexy. It can be scary as hell or as normal as going to the drugstore to buy toothpaste. A trip to a sex toy store, for some, is the ultimate “OMG that changed my life” experience,; for others it can be a “Bletch! never again!” story their best friends tease them about forever.

But shopping for anything can be a big deal for people with disabilities – whether it’s being able to get to the store (or use the store’s Web site without cursing technology and punching the computer), or physically accessing all aisles and shelves, or receiving customer service that’s respectful and helpful, receiving customer service at all (I.E. not being passed over in favour of the person in line behind you), or even being able, with a significantly lower likelihood of being employed and having disposable income, to afford what’s being offered.

The rest of this post will look at how beliefs about and attitudes towards disability can make or break a shopping experience, and why that’s even more of a big deal when we’re talking sex toy shopping.

My own first sex toy shopping experience went something like this:

Me: “I’m looking for a G-spot vibrator.”

Shop Owner: Opens clear plastic box and places toy in my hands. “here’s one. It’s only $34.99. Here’s the button to turn it on. How are you going to be able to put the batteries in?”

Me: Touching the slender hard-plastic cyllinder with a curved end that looked better for fishing (minus the sharp edges) than for rubbing delicate tissue: “Does this actually feel good?” (What I wanted to say: It feels too hard.)

Store-Owner: “Here, let me show you how to put the batteries in. You unscrew this part–”

Me: “I’m not sure it’ll feel…?” (Silently: “Yes, I think I can figure out how to put the batteries in. Not really worried about that right now.”)

Store-owner: “Oh. You just have to experiment and find what feels good for your body.”

Me:”Umm, sure. I’ll guess I’ll try it… That’s all you have for G-spotting?”

store-Owner: “This one will be the easiest for you to put the batteries in.”

Me: “Okay, I guess I’ll try it.”

A minute later I’d payed my money and left, plastic bag full of toy in hand.

Was this just one of those store-owners who wasn’t interested in spending time with customers?

No. When we weren’t talking about batteries, she mentioned that she’d just spent an hour helping a guy pick out a toy for his wife. I’m guessing the guy didn’t have a physical disability. He sure didn’t use a wheelchair; that was one of the stores with steps.

My experience hardly counts as discrimination, but there’s a reason it’s stuck with me.

I walked into that store expecting to be treated like a customer, shown options, given space and time and information to make my decision. I wouldn’t particularly have minded being shown how the battery compartment worked, but in a more “oh, by the way” manner as part of giving me information about the toy. The store-owner expected that I was a blind person. Whatever a blind person meant to her, it wasn’t someone who comes to buy toys.

My needs as a sex toy customer weren’t any different from any other customer’s needs. The store-owner needed me to not be different from any of the other people she expected to walk into her store and buy stuff so she could pay her bills.

My needs were to have a sex toy shop employee or owner stay calm and professional at a time when, no matter how enlightened I was about sex toys, I needed their help and was feeling nervous, anxious, and like I wasn’t quite supposed to be doing what I was doing or spending my money on “frivolous” things. The store-owner’s needs were – well – to deal with this anxiety-producing situation of being faced with a blind customer as quickly as possible.

I’ve learned from friends and acquaintances who’ve run or worked in sex toy stores that how to support customers is a big part of their work. They want customers to feel welcome, but not crowded, supported, but not intruded on, cared for, but not too much.

They know that people who come into their store could be having any number of sexual insecurities, relationship problems, body image issues, and more. They know that sometimes their potential customers come in looking for answers without even knowing what the questions are.

Your standard retail experience, where you usually expect that a salesperson will greet you, cheerily ask if you need help, and check in with you every 4 minutes, might feel downright terrifying to some folks trying to buy a sex toy, or porn, or a bondage kit, or a bottle of lube. Most of us have been taught to feel such shame around sex in general, and especially our own sexualities, that too much input or friendly chit-chat could feel really invasive or scary. (Note: This doesn’t apply to everyone. For some people, that kind of friendly connection puts them at ease, but they need to be the ones who initiate it.)

but, for a blind person, who may or will need help – depending on how much usable vision they have, E.G. Can they read lube bottles, see the pictures on DvD covers, or see where the rainbow-coloured dildos are kept? – how does a sex toy salesperson maintain as much physical or emotional distance as the customer wants while still giving practical help finding items and reading packaging? Or, what if a person in a wheelchair wants to look at a dildo they can’t reach? Asking a sales associate to reach it and hand it to them isn’t necessarily an invitation to talk.

I think what makes customers with disabilities’ experiences in sex toy shops unique is that many sex toy store customers, regardless of ability, bring their own nervousness, fear, anger, or whatever to their shopping experience. Let’s face it — sex and sexuality carry huge emotions attached to them. Most of us have internalized shame around sex and sexuality in one way or another.

Going into a toy shop, especially in a small town, especially if you look different or distinctive, can carry a whole lot of emotions and fearful thoughts with it.

So, the average toy shop customer could be walking through the store with any one of these emotions, or all of them and more all at once! They’re counting on people working their not to judge them.

Disabled customers, in addition to potentially coming in with this emotional bagage, will also often be carrying around the anxiety of “How will I get treated by these strangers, today?” and for some “Will I even be able to get into the store?” That’s a lot of inner chatter and anxiety to be carrying around all the time.

Based on what we know about general attitudes around and knowledge about disability, it’s pretty reasonable to say that When a visibly disabled customer enters a store, some people working their are going to have big, complicated emotions of their own come up. People have huge fears and uncertainties around disability. Folks will often explain their awkward behaviours around visibly disabled people as “not knowing what to do,” or “not wanting to do the wrong thing.” Disability is, I think, still this really unfamiliar thing, at least when it comes to disabled people being out and about, earning and spending money, making sexual choices, window shopping, and just generally not being off in some special space. I’m still working out ways to help nondisabled folks, or folks with limited experiences around a variety of disabilities, understand some of the basics of giving assistance, without turning it into a list of “do”s and “don’t”s that ends up looking a lot like this guide.

A lot of the negative and nervous responses to disability from nondisabled folks come from a place of “OMG, what if that (being disabled) was me” and also from a place of “This person isn’t anything like me; I can’t relate.” The fear most people have around disability is deep and it’s unlikely that that fear isn’t going to afect the interactions of people who feel it with visibly disabled folks.

So, you’ve got a person looking for sex toys or sexually explicit materials, or condoms, or maybe they don’t even know what they’re looking for, and you’ve got a person feeling undone by the physical reminder of disability in front of them. Remember what I said above about hostility? Yes, that happened. No, it wasn’t fun, but that’s a story for another time.

I think the reason that being greeted with hostility in a sex toy store surprised me so much was that, by and large, people who work in sexuality-related fields have been some of the warmest, most respectful, most creative and disability-aware people I’ve ever met. But these have alsso been the people who recognize that both disability and sexuality are mega-giant issues that can undo people’s sense of security. More happily, these are also the people who realize that sex and sexuality can be fun, creative, and playful, and is something everyone has, and can access, if they want.

Oh, and in case you wanted to know: My instincts were spot-on (pun intended, maybe?) about that toy. It didn’t work for my body.

And, the toy store with no steps? Come As You Are, though, sadly, they had to close their doors in 2016.

Aug 032015
 

Can we all agree that asking random people on the street (or in the mall, or anywhere, really) about their sex life is just plain creepy?

People with disabilities are asked, much more often than you’d think, how, or if, we have sex. No, really, this happens all the time. If it’s not about sex directly, it’s something to do with relationship status. Maybe it’s random questions about whether you’re married, or about your dating life. Maybe it’s your server at the fancy restaurant assuming the person you’re sharing a romantic candlelight dinner with is “just” a friend, or worse yet, your brother or payed caregiver.

***

Honey, if they’re with me then they’re not looking for normal — and I don’t mean because I’m crippled. Because sex with me can mean any fetish, any request you’ve always been afraid to make, any position you can think of. Because sex with me can be watching porn together, reading erotica together, or preferably making our own of both…

– Kelsey Warren, My Body

This poem is Kelsey’s answer to the question about her sexual relationship she couldn’t laugh off.

It’s powerful, edgy, and provocative.

As with anything both taboo and sexy, Internet news sources picked this up right away, with headlines like What It’s Like to Have Sex with a person With a Disability.

Kelsey’s sexuality is clearly broad and flexible, and she has the gift of a lovely voice and the art of creating words that grip us and won’t let go.

I know I’ll be going back to this video for inspiration -the sexy kind, not the inspiration porn kind.

But this doesn’t speak to all disabled people’s sexualities – and I doubt Kelsey means it to, since she named her poem My Body – even as it’s the perfect challenge to the idea that disability makes someone not-sexy and incapable of or uninterested in sex, or to the idea that “normal sex” – (whatever that is) – is impossible for disabled folks.

The lives of people with disabilities are so often boiled down to being about our disabilities alone, – usually because nondisabled folks can’t imagine how life with a disability would work – that the idea of grocery shopping, or getting dressed, or having sex with one’s partner become exciting or alien concepts nondisabled people want to learn about the way they’d learn about astronomy or the mating habits of giraffes.

There’s also the assumption that all of these life activities are controlled first and foremost by the disability – that disability changes everything. Newsflash: It doesn’t. We’re just as likely to swoon over cute puppy pictures (or stories for those of us who can’t see the pictures), have ridiculous laugh-fests with friends, or get frustrated over the rising costs of milk. The ways we get dressed – whether it’s how we know what colours we’re wearing or how we put on our underwear or tie our shoes – are just the ways we dress, not anything better, or worse, than dressing the “normal” way – because that way of dressing is normal for us.

***

“I want to learn more about accommodating people with disabilities if I’m going to have sex with them.”

This was one of the answers I got to a question on Twitter asking what people most wanted to learn about sex and disability.

Since it was sex we were talking about, I asked if this wasn’t actually more about pleasure than about accommodation. When I think about accommodation, at least when it’s related to disability, I think of Braille signs on elevator buttons, equal opportunity employment, or buses that announce stops and have wheelchair lifts – not sexual intimacy or X-rated play time.

It turned out this person was concerned about hurting a potential disabled partner if he didn’t understand how their disabled body worked.

Fair enough – but… We don’t know how anyone’s body works until they tell us, until we’ve spent enough time with it to learn what every little sound or wiggle means. It ultimately doesn’t matter what someone’s body does or doesn’t do; no “Sex and Disability 101” Or “Sexual Exploration for Everyone” workshop is going to be able to tell you how to have sex with them.

The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges come up when we’re faced with things we’ve never encountered, and sometimes have never heard of.

Knowing something about different disabilities can take some of the mystery of disability out of the equation, and that’s a good thing. The more familiar words and realities like cerebral palsy, hemiplegia, degenerative retinal diseases, PTSD, etc, are, the less unfamiliar they’ll be to people, and the quicker they can get on with their everyday business, including getting it on with a new lover. It’s also a relief to disabled folks when people understand the basics of what we’re telling them, even if it’s as simple as knowing basic human anatomy.

Sure, there are general disability-related differences in romance and sex we can pretty much always assume to be true: A blind man can’t glance across the room and entice an alluring stranger with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, with going to the bathroom after sex. A deaf person will likely want to leave the lights on so they can read a lover’s lips, watch body language, or do whatever they need to do to communicate while getting it on.

Understanding disability by studying WebMD and Wikipedia won’t help anyone learn a lovers’ body.

We want answers, and formulas, for sex, and for understanding disabilities, and there just aren’t formulas for understanding either, or both together.

No one’s limbs work the same way, no one’s brain chemicals do the same things, no one person likes exactly the same sexual activities in the same way.

Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate.

I don’t necessarily suggest conducting an interview with someone you want to have sex with – unless question-and-answer sessions light your erotic fire, and theirs – but discussing questions like the ones below can be a good place to start if you’re just not sure what to do with this playmate you find so hot:

  • What feels good to you?>
  • How do we have sex so I don’t hurt you?
  • I want (insert your deepest fantasy, or just what your body craves that day). What do you want?

***

I think the connection we need to keep making between disabled people and sexuality is our right to want sex, to think about sex, to be sexy and express our sexuality – or not to do any of those if we choose not to. For some people that includes the right to have sex, but for others it’s more about the right – and the responsibility – to live in a world that’s so often about sex appeal, and where so many interactions are expected to have sexual overtones.

…unless you’re disabled, in which case you’re assumed to be childlike, uninterested in sex and lacking a sexuality, even unaware of sex; in other words, nonsexual.

We used to describe these attitudes towards disabled people’s sexualities as seeing people with disabilities as “asexual.”

Asexuality is, however, an actual identity or orientation. It’s not generally seen as an absence of sexuality, but as a way some individuals relate to their own sexualities or with the idea of sexuality in general.

Disabled people can, and do, identify as asexual, without that having anything to do with their disability.

I think highlighting the variability of disabled people’s sexualities is important, and sometimes overlooked.

We emphasize so much that disabled people are sexual beings, that we forget that we’re allowed to be lousy lovers, or to have sexual relationships that don’t work, or to have lovers who just don’t enjoy our sexiness without that making them narrow-minded, ableist jerks. We forget that having sexual rights also means we have the right to be lousy in bed, that we have the right not to shock others with our sexualities, that we have the right to be celibate by choice.

So many disabled people don’t get choices, though. They don’t get privacy, or say in who provides their personal care, or who knows about their personal business. The idea that disabled folks who need physical assistance with daily personal-care needs (dressing, bathing, caring for their home, etc.) could also get assistance (without judgment) with the parts of their sexual and intimate lives they physically can’t negotiate themselves is deeply complicated.

There are no easy answers – so much of what I’ve brought up here would, and has, fill books – and there are no quick fixes for making mass changes to attitudes about disability, or sex, or disabled people expressing our sexualities. We’re talking about changing generations of attitudes about two experiences people hold so much fear around in general.

Maybe one place to start, for everyone, is to expand what we think of as sex in the first place.

Jul 162015
 

I published this interview with Joan Price on another blog more than three years ago. Since then, I’ve met Joan several times, and she’s just as funny and smart in person.

Joan’s approach to sex and sexuality is a perfect fit here at Ready, Sexy, Able.

Not all the changes seniors go through will be related to disability, and people with disabilities are all ages. But I think there are similarities in the kinds of discussions seniors and disabled people have about sexuality and relationships – conversations about how, yes, we really are intrested in and able to do sexy things, and no, our sexiness or our interest in sexuality really isn’t gross.

***

Joan Price JoanPrice.com calls herself an “advocate for ageless sexuality”. She is the author of Naked
at Our Age: Talking Out Loud About Senior Sex
(Seal Press, 2011), Better
Than I Ever Expected: Straight Talk About Sex After Sixty
(Seal Press, 2006), and several books about health and fitness, including The
Anytime, Anywhere Exercise Book: 300+ quick and easy exercises you can do whenever you want!
! Joan also speaks professionally about senior sex and about fitness. Visit Joan’s award-winning blog about sex and aging at Naked At Our Age. Joan lives in Sebastopol, California, where she teaches contemporary line dancing – which she calls “the most fun you can have with both feet on the floor.”

How did Joan start writing and speaking about senior sex? For fifteen years, Joan was a widely published health and fitness writer. Then at 57, after decades of single life, she fell deeply in love with artist Robert Rice, who was then 64. Their love affair was profound, joyful, and extremely spicy. Their passion, in contrast to society’s view of older people as sexless, led Joan at age 61 to write Better Than I Ever Expected: Straight Talk about Sex After Sixty (Seal Press, 2006) to celebrate the delights of older-life sexuality.
read more about Joan

You can also watch Joan talk about senior sex here!

A few months ago, I sat in on a phone interview with Joan,and found her one of the most personable, articulate, and delightful people I’ve ever virtually met. Her comppassionate but no-nonsense approach to sexuality is refreshing. Joan was kind enough to answer a few questions so I can share a little of her wisdom with you. Thank you Joan!

R.M. You’ve done a lot of things in your life, most of them relating to education in one way or another. I’m particularly interested in how your experience as a fitness professional and a sexuality educator interconnect. Do you think they do?

J.P. Yes, on many levels. bif we feel like we’re “in” our bodies, feeling the joy of movement and the way our muscles work, we enjoy both sex and exercise more. Physiologically, exercise increases blood flow not only to the muscles and the brain, but also to the genitals, enhancing arousal and sensation. Emotionally, the better we feel about our bodies, the more sensual and sexual we are able to be. And at our age, knowing we’re treating our bodies well will let us enjoy them more, overlooking wrinkles — I hope!
Also physical exercise is great foreplay! Robert and I always made time for walking or dancing as part of our foreplay. By the time we embraced in bed, we were already in sync with each other’s bodies and our own.

R.M. What are the three most important things you’d like seniors to know about their sexuality?
J.P. 1. Our youth-oriented society’s view of seniors who enjoy sex as icky, weird, pathetic, or ludicrous is wrong, wrong, wrong! Our sexuality can be pleasurable and joyful throughout our lives.

2. If something emotional or physical is interfering with your enjoyment of your sexuality, there are solutions available! That’s why I wrote Naked at Our Age: Talking Out Loud about Senior Sex, because so many of us just accept our changes as inevitable, unchangeable, and too embarrassing to seek help for – and don’t know that solutions exist that can totally change our experience.

3. We as seniors need to talk out loud about our sexuality. That’s the way we can change both society’s view and enrich our own enjoyment by seeking information, learning what’s possible, and sharing that knowledge.

R.M. I notice that you use the terms “senior sex” and “ageless sexuality.” What would you particularly like younger people to know about sex and aging.

J.P. I know it’s part of youth to believe you’ll never be old, never be wrinkly or arthritic or have saggy skin, never fall out of love or lose a partner to cancer – but this all happens! The best “sex insurance” that a young person can have for a sexually gratifying older life is to learn about the changes, listen to elders about their experiences, and embrace older people who are willing to share with you. It’s a sign of deep maturity to welcome a dialogue with elders, and emotionally enriching, too.

R.M. …and if you could say a few words about what is coming up next for you, what your current projects are, that would be terrific!

J.P. Woo hoo! I’m very excited about my new project, editing an anthology of senior erotica! This will be a collection of stories and memoir essays by writers over fifty, featuring steamy characters over fifty. Think about it – why is erotica almost always about young, hot bodies? Is there an upper age limit to being sexy, wanting sex, caring about sex? I say no. Please see my Call for Submissions.

Update: Ageless Erotica was published in 2013. It’s available in paperback and e-book.

Further Reading

Better Than I Ever Expected: Straight Talk About Sex After Sixty and Naked at Our Age: Talking Out Loud About Senior Sex are both availble in audio.

Joan’s latest book The Ultimate Guide to Sex After Fifty: How to Maintain ? or Regain ? a Spicy, Satisfying Sex Life is available in paperback, e-book, and audio

Jul 062015
 

I wrote the following post in March 2014, after attending Mara Levy‘s talk, Problem-Solving Sex with Disability at the Catalyst Conference.

Mara Levy is an Occupational Therapist (OT) in Washington DC. Occupational therapists help people who’ve experienced injury or illness to return to activities that are meaningful to them—activities like walking, driving, working, crafting, and the like.
Mara includes sexual expression and sex in her definition of meaningful activities. This may be a “well duh!” idea to many readers here, but there’s this belief out there that people with disabilities have more important things to worry about than being sexual, and that sex just isn’t relevant once someone becomes disabled. (Not true!) it doesn’t help that many medical and rehabilitation providers don’t address sexual issues, concerns, or changes with their clients, and you can have people really not sure where to go with meeting the sex and sexuality needs that don’t go away after illness or injury.

There are a lot of negative, or just plain silly, responses to disabled people and sexuality.

Here’s what Mara says nondisabled people need to do about that:

  • listen
  • rid themselves of paternalistic attitudes (thinking of disabled people as childlike or helpless)
  • Avoid jumping in to help or change something unless they are asked to
  • remember what is and isn’t their business (hint from me: If you wouldn’t ask an apparently nondisabled person on the street about their sex life, don’t ask a disabled person)
  • respect boundaries

And, Mara added, nondisabled people need to do this processing and awareness building on their own time.
A disabled person’s sexuality is no one’s business unless they ask you for help working on sexual issues, or unless they want to have sex with you (and you want to have sex with them).

People also need to question the all-too-common assumption that a visibly nondisabled person seen with a visibly disabled person must be the caregiver or helper. This gets old—really fast—especially if the people in question are actually lovers.

Speaking of partners, Mara made what I thought was a really important point about consent. It’s not just the person with disability who needs to consent, but their partner. For some disabled folks, most physical activities have some level of pain or discomfort attached to them. A partner may not be able to consent to something they know hurts their partner, no matter how much they’re told that it’s okay, and that this sexual activity is wanted. For people with chronic or episodic (occasional, brought on by specific factors like weather, certain activities, etc) pain, this may well be part of the sexual negotiation.

Because people are often sent the message that talking about sex and sexuality isn’t okay—and this is doubly true for people with disabilities—Mara emphasizes that it’s important for medical and rehabilitation providers to give their clients or patients explicit permission to talk about sex and sexuality. Even if that’s not their area of interest or specialty, even if they don’t have all the answers (people who do specialize in sex and sexuality rarely have all the answers), just listening can be powerful, and starting the problem-solving process can lead to patients and clients getting what they need and want from their sexual lives.

There are a lot of barriers to people with disabilities experiencing their sexualities, such as:

  • Physical and psychological pain or discomfort.
  • Societal attitudes about what “real” sex is, about who is sexy and attractive, even about who is allowed to live. (Hint from me: Disabled people are often told, by strangers and friends alike, that a nondisabled person would “just die” if they had such-and-such a disability.)
  • Paternalistic or inspirational attitudes. It’s a strange either-or in which people with disabilities are either seen as childlike—in need of help or guidance—or are seen as amazing, imbued with super powers. Sometimes, disabled people are subjects of inspiration porn, which isn’t at all sexy!

Mara proposes using the same model she uses to work with clients around their activities of daily living—I just had to throw some rehab speak in there—to helping people solve sexual problems or simply to reach their sexual goals.

This model has us looking at the person, at the environment, and at the situation. For each one, we figure out what needs to and can be fixed, what can be compensated for, and even what may traditionally be seen as a problem but which can actually be an asset.

What does the person bring? Not just their disability, but their hopes, their desires, their beliefs about sex (and what they know about sex). The environment may or may not be accessible to this particular person. What’s the situation? What’s the person trying to do? Does the available environment make the situation possible? (If the person wants to have intercourse with someone, but needs (maybe for pain or mobility reasons) to be able to lie down on a firm surface, and the only room that’s available has a fluffy feather bed, the needs of the person, the requirements of the situation, and the reality of the environment, aren’t going to go together.

That’s just a simple example of course. The kinds of questions that will be asked, and the kinds of fixing, compensating, or adapting that will be done will depend on the activity—and when it comes to sex and sexual expression, the activity list is endless. So here’s just a sampling of the kinds of questions one might ask:

Person

  • What are the physical issues (E.G. pain, reduced sensation, mobility impairment)?
  • What are the psychological issues (E.G. anxiety, stress, grief around acquired disability)
  • What values and knowledge does the person have around sex?
  • Does the person have a solid understanding of their medical condition? Is the prognosis and treatment known? Are there limitations on sex recommended by healthcare providers? If medication interferes with sexual functioning in a way that doesn’t work for the person, can that be changed?

Environment

  • Is the place where the person wants to express their sexuality accessible (E.G. dance club, bedroom)?
  • If the person needs a caregiver to help with some tasks before, during, or after the time of sexual expression, is there someone close by who can give nonjudgmental assistance?
  • Cultural environment: What attitudes are held about sex and disability, both separately and together? Are they negative or limiting? Has the person internalized them? Are they having to spend time and energy resisting spoken and unspoken messages they’re getting about their disability, their sexuality, or both?

Activity

  • What’s the activity in question? What movement or amount of physical and emotional energy is required? What props are required?
  • Are there things that would help, such as pillows to support the body or grab bars to help with movement?
  • What are the goals the person has for the activity—orgasm, connecting with their own body, laughing and sharing playful, intimate touch with someone else?

The questions you’ll ask will be very different if you want to go dancing and flirting at a local bar or if you want to find a romantic partner.

It occurs to me that this kind of problem-solving process can be applied to anyone’s life, whether you have a disability or not.

It seems to me particularly useful though in breaking down barriers that say that sexual expression for someone who has disabilities is just too complicated to warrant attention.

Jun 172015
 

This was originally written and published in late August, 2014 after I attended Jessica Naslund’s workshop, Healthy Relationships and Sexuality: A Systemic Approach to Supporting People with Cognitive Disabilities, at The Woodhull Sexual Freedom Summit.

Workshop description:

As practitioners and educators we are guiding individuals through their unique sexual journeys. People with cognitive disabilities have a challenging journey ahead of them because of barriers to education that are perpetuated by myths about how these individuals relate in society. It is our job as advocates to understand the barriers and work to push through them so that everyone has access to the same pertinent information and resources. People with cognitive disabilities require more multi-dimensional approaches to capture and retain comprehensive sexuality education material. These approaches may include visual or auditory media, hands on activities, developing a support system for the individual, and a more team approach to teaching with caregivers and support providers.

Words can’t quite describe how awesome this workshop was.

Jessica Naslund is brilliant—enthusiastic, passionate, and best of all she doesn’t just talk the talk, but walks the walk every single day of her working life.

As a social worker, Jessica works with, as she puts it, a population no one wants to talk about—intellectually and developmentally disabled people—around an issue no one wants to talk about—sexuality.

Jessica started by asking workshop participants what words and phrases come to mind when we think about sex and sexuality. We then shared words describing thoughts and feelings around sex and sexuality and people with intellectual disabilities. The two lists didn’t look at all alike. The first one included a variety of feelings and experiences, most of them positive; the second, full of limits and lack of possibilities, was positively dreary!

We should not be ignoring the lives of people with intellectual disabilities, or the reality that sex and sexuality can be, and usually are, just as much a part of these folks’ lives as they are for anyone else.

It shouldn’t have to be said, but…

People with developmental or intellectual disabilities do have sexualities – sexual feelings, experiences, desires, vulnerabilities. people with developmental or intellectual disabilities are also at alarmingly increased risk (relative to the general population) of experiencing many kinds of abuse, including sexual abuse.
This is, to put it mildly, not okay.

Jessica’s work focuses on teaching people with developmental or intellectual disabilities the positive as well as risky parts of sexuality. For example, a person can and should be taught about dating and sexual harassment, or happy feelings and bad feelings when someone touches them and they don’t want that touch. It’s really hard, if not impossible, for people to know something is bad, if they don’t also learn about the good things, and that it’s okay to have those feel-good feelings in their bodies when they touch themselves or when they think about someone they have a crush on.

Dave Hingsburger’s Ring of Safety takes this sexuality-affirming and humanity-affirming approach to preventing abuse. I had a momentary “squee!” moment when Jessica mentioned Dave’s work, as reading his article A Witness to Courage was pivotal in catalyzing my commitment to giving a voice to disabled people and our sexualities.

The Ring of Safety incorporates several components, including individualized sex and relationship education, awareness of privacy, and the ability to non-comply—to say no. People often don’t know how to teach people with intellectual or developmental disabilities about sex and relationships, or don’t think it’s important to do so. But, if someone doesn’t know what their body parts are called, how can they convey whether those parts are feeling good or bad. If someone doesn’t know what privacy is, or what it feels like, they can’t tell if that privacy is being invaded. Things many of us take for granted, such as getting to spend time alone, or being able to use the toilet and shower by ourselves, are luxuries virtually unknown to many. Jessica shared a story of one person who was considered such a threat to himself and others that he was never, ever allowed to be alone. His behavior changed markedly when he was given the chance to be alone in a familiar room for fifteen minutes at a time.

People with developmental or intellectual disabilities are often in very regimented treatment and care systems (with tight schedules and strict rules) where they aren’t given privacy, even to just be alone in a room listening to music or watching TV for a while, and where they aren’t allowed to say “no!” even to simple things. Too often staff in these environments are rushed or overworked, and don’t feel like they have the time for the negotiation process of someone saying “no” to something the staff member thinks needs to be done, such as taking a shower or finishing a snack.

Jessica quoted Hingsburger as saying: “If you can’t say no to peas, you can’t say no to penis.”

When someone indicates they don’t want to eat peas, no matter what their disabilities are, that needs to be respected. We can’t expect someone to be able to protect themselves from being hurt, or tell a trusted person that they were hurt, if their preferences around what they do, and what happens to their bodies, have never been listened to or respected before.

It’s important that intellectually disabled people be given the opportunity to make choices. Even when something needs to happen or the person with an intellectual disability isn’t able to indicate what their choice is, talking to them, asking permission before something is done (for example: “Can I dress you now? Instead of “Okay, time to dress you.”) goes a long way towards restoring someone’s humanity, and, ultimately, helping to keep them safe.

If people with intellectual disabilities don’t know what healthy is, they won’t know what unhealthy is. This includes both speaking up if they’re being abused, and learning how to not be abusive. The incidence of abuse among developmentally and intellectually disabled people isn’t just from caregivers, but from intellectually and developmentally disabled people themselves. Very often, this is rooted in people not understanding boundaries. Even when boundaries – such as good touch/bad touch – are taught, time isn’t usually taken to teach about emotions in a way folks with different intellectual disabilities can understand. For example, educators can teach not only “don’t hit” but “this is what someone looks like when they’re uncomfortable, or scared, or have just been hit and don’t like it at all.”

Many people with intellectual or developmental disabilities need new concepts spelled out really concretely.
This is why it’s important to teach about body parts, about feelings, and about relationships. Many people with developmental disabilities have trouble reading social cues, so when they learn about bodies and relationships, they need their educators to talk very specifically about what people are feeling when they look or act a certain way. They don’t know they’re making people uncomfortable, or that they’re about to get in trouble for assault or harassment. Or, they don’t know how to convey amorous feelings without overwhelming the person they have those feelings for (E.G. Learning how many voice mails it’s acceptable to leave for a girlfriend or crush object). But, using the right learning tools for each individual, folks can learn what cues from other people mean – how to use the skills they have to judge if what they’re doing is okay.

*

The reality that’s shown itself over and over again is that when people know what their body parts are, and understand privacy, they start to disclose abuse. Residential and day programs where this kind of education is done have a higher reporting rate, but that doesn’t mean they have a higher incidence rate. It means people have been given some of their power back, and the tools to communicate what’s happening to them or what’s happened to them in the past.

Jessica advocates using multiple systems approaches- for example, recognizing that there are multiple ways people learn, and hence multiple ways people teach, and also that teaching and supporting people means working with everyone, from healthcare providers, to group home staff, to educators, to families.

She offered this example of what this collaboration reveals: People who are not verbal, or who have a limited vocabulary, often express their feelings through their body language and behavior. How frequently or intensely someone stims can indicate how that person is feeling. People who see them every day, support staff and family, are the best people to ask about which behaviours or expressions mean excitement, nervousness, happiness, stress, etc. I particularly like this approach because it validates family members, not the professionals who come in for “sessions” to work with them, as experts. Family members often end up doing the majority of caregiving, and the work of this caregiving, plus the constant interaction with professionals who are often telling them what to do or not do after spending relatively little time with them, can take their power and sense of confidence (both personal, and in the care they’re providing) away.

Another part of this approach is finding a teaching method that works for each individual. Including using pictures to tell a story or diagram the steps for something, like a visit to the doctor or what it takes to ask someone out and go on a date.

Jessica gave this example. People with Down Syndrome aren’t any more affectionate than the general population—which is to say that some might be very affectionate, based on their personality, but it’s not a feature of the syndrome. They’re encouraged—taught—to express affection to everyone, probably because people are drawn to their open manner and frequently happy disposition. Hugging everyone isn’t culturally appropriate behaviour, though, and not teaching people boundaries deprives them of knowing when their boundaries have been violated or when they’re crossing someone else’s boundaries. There’s a need to teach all people which forms of interaction are okay In which situations. Jessica says she will often use pictures to diagram different interaction circles—e.g. the mail carrier is in the wave circle (we just wave if we see her), doctor is in the handshake circle, aunt is in the hug circle, etc.

As I write this, I think about how important it is to maintain consistency. A doctor who has known a developmentally disabled patient for a long time, may feel very fond of this patient, and may interact with them in ways they don’t interact with other patients. I think it’s important for them, in this case, to express fondness in other ways, such as through voice, body language, level of interest in their lives, and so on, to reinforce the message that while it’s a friendly relationship, it’s still a doctor-patient relationship.

Relatedly, we need to remember to treat people according to their chronological age, not their presumed mental age. If someone is thirty-three, they should not be treated as if they’re ten. This includes how we talk to them, what activities they’re encouraged to get involved in, and what information (about anything, but especially about sex and relationships) we think they’re supposed to have. I’ve often thought that judging what someone understands, or even how they perceive the world, on their verbal skills is misguided. Jessica agrees, saying that we really can never know exactly how people perceive or understand things because we’re not in their heads.

This presentation taught me a lot of useful information I hadn’t known —as well as gave me new language for things I already knew—but it also made me reevaluate the way I understand people with intellectual and developmental disabilities. Jessica presented several scenarios for us to talk through, both to puzzle out what might be happening and to brainstorm solutions. In working through the following scenario, I discovered a flaw in my thinking:

A young woman attending a day program spends a lot of time in the bathroom, to the point where she’d rather be in the bathroom than participating in the activities. Her support staff have also noticed redness around her vulva, and that she’s been rubbing her vulva a lot.

We might presume that the redness, and the self-isolating behavior, indicates that she’s being sexually abused. Or, she could be masturbating to the point of irritation. Redness could mean that she needs lube, or that she’s not reaching orgasm and is rubbing herself more vigorously to try to get to the ultimate feel-good part—which could be why she’s wanting to hide away in the bathroom. Or, redness could mean an infection, yeast or bacterial, and she’s staying in the bathroom because she doesn’t feel good. Or… It could be for any number of emotional or physical reasons.

So, my first step towards a solution was to have this young woman visit a doctor. But no, there should be a step before that, a step that could help us narrow down the possibilities – a step that will center the young woman, not our beliefs about her. As with any situation, the young woman is the expert on what is going on with her own body; the only thing that differs is the way we access her own expertise.

That was the flaw in my thinking, not questioning whether and how we could get information from the young woman herself.

The operative question here, and one that only she can answer, is “how does your vagina feel? Happy, sad, itchy, mad, etc.” depending on her cognitive needs, the discussion might involve looking at or drawing pictures, or speaking words, or pointing at words, or illustrating with dolls, or any other communication system that works for that individual. Sure, a doctor’s visit is probably in order too, but how much better it would be if that appointment was arranged with the input of the woman herself.

Sometimes, the hardest part to reinforce is that people with developmental disabilities do have sexualities, and those sexualities should be respected.

Even when everything else is in place, the sex ed, the education about privacy, the understanding of a person’s communication style, the permission to noncomply and leave those pesky peas on their plate – people still don’t have the opportunity to express healthy sexuality.

Many group homes still frown on, and even forbid, their residents dating, pursuing relationships, and engaging in sexual activity with others. Sometimes, the response when a resident is found masturbating is anger, rather than withdrawing and giving privacy, or politely and firmly explaining that you need to do that in your room, not in the TV room.”

If we want to recognize people with developmental and intellectual disabilities as human beings, we need to recognize all the things that make them human.

Jun 162015
 

Talking about sexuality and disability is a big deal. Until recently, most of what we saw in mainstream media were reports of disabled people being abused and assaulted, or syrupy-sweet feel-good stories about a person with a disability in a romantic relationship which (gasp!) included sex.

Sex, and disability, as experiences, are assumed to be entirely different – with the thinking that one involves only pain; the other, involves only pleasure.
As social concerns and lived experiences, disability and sexuality don’t seem, at first glance, to have much in common either.

Disability is tangible – in our faces; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers that need to be broken down. Sexuality – just is – except that it’s not. Sexuality is an individual concern—except that it’s not. Sexuality is filled with pain, confusion, lack of access and education, and endless potential just as surely as disability is filled with struggle, misunderstanding, lack of access, and sheer humanity.

We can’t continue to ignore connections between the experience of disability and the experience of sexuality. we can’t do this because sexual pleasure isn’t just about individual bodies’ enjoyment (people’s sexualities are so much bigger than the physical and emotional experience of sex), and disability rights isn’t just about breaking down barriers and gaining legal equality (it’s about individual lives and collective experiences).

In talking about sexual pleasure, we (or at least I) make a pretty natural leap to questions of sexual health, relationships, intimacy, safety and recovery from sexualized violence, and access to help with all of these. In talking about disability and access we need to include access and inclusion in recreation and social opportunities, as well as employment, education, and living conditions. To break that down, we who are disabled need to be able to access fun things—including fun sexy things. Not considering social opportunities as important means, ultimately, not considering disabled people as full and complete humans beings.
Continuing down this road of thought, I begin to realize how similar sexualities and disabilities, as topics of conversation, are to one another.

Consider how mention of both sex, and disability, in casual conversation generally make people feel—scared, nervous, eager to change the subject, full of questions they don’t feel like they’re supposed to ask or don’t know who to ask.

Consider the struggle people talking about sex or disability often have with language. Which terms do we use? Will we offend someone if we use this term over that one? What do all those terms mean anyway?

Consider the way we talk about both sex and disability– in hushed voices, in euphemisms, in quick side conversations.

As for talking about people with disabilities who have sex, or how sex is affected by disability? —Well, we really just don’t talk about that.

When we do, we (at least according to mainstream media) frame an intimate relationship involving a disabled person as miraculous or inspirational, or we expect the lives of disabled people to not include any sexual experience or desire.

Come to think of it: Isn’t this how we represent sex in our culture too—as something out-there and in our faces, or something we need to repress or hide at all costs, with nothing in between.

Whenever we do acknowledge sexualities, whether the actors or objects of those sexualities are visibly disabled or not, the representations rarely convey pleasure. Sexual pleasure is something we, as a culture, haven’t paid attention to, and in that silence is the assumption that pleasure will just “happen” by itself. The reality is that it often doesn’t happen because of, among other things, lack of education and fear many have around their own bodies. If you’ve learned that exploring your own body is a bad thing, or you don’t have the words to tell your sexual partner what you like, or don’t have access to sexual healthcare to help with pain or illness that interferes with your sex life, pleasure could be hard to come by.

Interestingly, meeting the access and inclusion needs of disabled people is also something that’s just thought to “happen.” Someone else will take care of it. Surely, one step into a building isn’t a big deal? It’s okay if that Web site isn’t accessible; someone can help you sign that form or do your shopping, right?

These kinds of assumptions limit people—real live people, not theories.

Sex and disability both get talked about as if they’re medical issues, only to be addressed by highly educated experts. There’s this strange thing many of us who talk about sex professionally encounter, which is the question of what medical or therapeutic credentials we have. Most medical professionals receive little to no training in the areas of sexuality and relationships; seventy-five percent of American medical students surveyed reported receiving less than 5 hours of formal training in sex and sexuality. Most medical and therapeutic professionals, including psychotherapists, only get anything greater than basic training (which I’d still argue is what is needed to cover all of the basics) if they actively seek it out.

People with disabilities often find that medical and therapeutic folks are assumed to be the ones who have the most knowledge about our bodies and minds; they’re the ones who tell us what we are and aren’t able to do (how does this jive with the finding that more than half of American medical school Deans report that their students aren’t adequately trained in disability or in working with disabled people?) Whether it’s through unsolicited assistance from a stranger on the street, or an officious pronouncement from a medical professional, disabled people are often not seen as being in charge of our own lives, and as the best experts on those lives.

Many people don’t get the education they need to make sound choices about negotiating sexual relationships and taking care of their sexual selves. Many disabled people don’t get the tools (often practical tools like technology, mobility aids, and accessible housing or workplaces) to live life fully and safely.

What I think we end up with, with both sexuality and disability, are realities that affect both individuals and communities. Not talking about these realities turn everyday experiences of sexuality, disability, or both, into the problems – sexual assault, unwanted pregnancy, sexually transmitted infections, abuse and neglect of disabled people, severe isolation among people with disabilities, to name a few – they’re already assumed to be.

What do we do? We talk, and talk, and talk some more.

We treat everyone like human beings. We avoid running in fear from mention of sexuality and from disabled people. We avoid shame around sexualities and belittling (which often looks like shaming) of disabled people

We look at the cool things talking about sexuality and disability do for our understanding of both.

Disability impacts sex, sex impacts disability, and the reality that people with disabilities can and do have a sexuality and have sex (and enjoy it) tends to be forgotten.

How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have an awareness of themselves and what we need and want that other folks just don’t have, or, and please forgive me for circular logic, self-awareness other folks just aren’t aware they have. Apply that to sex, and to life in general, and some pretty amazing things can happen – like more sexual pleasure, fewer unhappy relationships, more confident people (sexually and in general).

Having a disability can also result in people needing to do sex and express their sexualities differently, hence breaking the mold of the popular idea of how sex “should” be done—something that can only make life freer, and more fun, for everyone.