Oct 232014
 

Last month, the American Academy of pediatrics updated its guidelines on providing sexual healthcare for adolescents, though the part of those guidelines validating that teens with disabilities have sexualities too didn’t get a lot of press.

yes, teens with disabilities do have sexual feelings, are interested in sex, and (mock gasp!) engage in sexual activity with themselves and other people.

It was strictly against the rules, of course, but I happen to know that the school for the blind I went to was teeming with horny teens acting on their horniness!

I wasn’t one of them, but I did hungrily, and a little guiltily, devour the three sex and sexuality books the school library had in Braille.

So, this week I’m sharing a piece from the depths of the Internet, written by a disabled teen, about her sexuality.

Cara Liebowitz is a powerful activist for disability rights.

She gave this interview on disability and sexuality four years ago when she was in her late teens.

Enjoy.

Oct 022014
 

The Internet is giant! It’s a library that will never get full (at least, I hope it won’t) and has decades of material. Most of us can barely get through the news and opinions posted each day, let alone find the gems of the past—and there are gems.

Every Thursday I will post a link to something I’ve found that relates to at least one of the themes I write about here—sexuality, disability, abuse, relationships, and so on.

Since my last few posts have been along the lines of “WTF do people think they’re doing?” I thought I’d give you a funny-but-smart post from someone who does kno what he’s doing.

This week’s post is from Dave Hingsburger, published way back in 2006. (I think that makes it about 500 years old in Internet-time.) Dave started his blog that year, and has been writing, almost daily, since then.

I wrote here about how much I value Dave’s work, so it’s fitting that I start this series with one of his posts, and that it’s one where he talks about how he has been able to directly help people with disabilities explore and express their sexual selves.

———

Today I’m going shopping for a dildo and a butt plug – on work time, on a work mission. There are times I love working in the area of sexuality. This is one of them.

Continue reading.

Sep 252014
 

Dear Ken,

So, on Monday you tweeted:

Nothing sadder than a hot person in a wheelchair.

What’s most sad about this is that Twitter tells me (as of the last time I looked) it was “favorited” three-hundred eighty-seven times.

What I really want to know is: Why? Why would you write such a thing.

Are you feeling sexually insecure?

Did you think you were being clever? (Hint: You weren’t. If you need supporting research to back that up, here you go.

Are you skittish around wheelchairs? Sometimes people lash out when they’re feeling insecure. Many people in our culture have almost a “primal fear of becoming disabled”, so, don’t be ashamed if you’re afraid; lots of people are.

Yes, what you did was lashing out. No, you didn’t target anyone specifically. You didn’t physically attack anyone, or call them names, or undertake persistent verbal harassment.

What you did was much more on the level of a microaggression. Only, it’s on the Internet. The Internet has this habit of making things grow, taking away the micro and increasing the aggression. Plus, when you’re on a popular TV show for six months, have written lots of books, and are generally being a public figure, people kind of tend to believe the things you say. You wouldn’t want to steer them wrong, would you? (Yes, I might just be wagging my finger at you.)

People with disabilities–these are real people you’re talking about. I know: I am one of them. I’m visibly disabled, though not a wheelchair user. People with disabilities are frequently seen as childlike, incapable, often even subhuman. Denying our sexuality is just one more way to deny our humanity, and that’s exactly what you’ve done. You’re talking about people in wheelchairs, but I’m left wondering: Where does it stop? Do hot blind people make you sad? How about hot people using crutches or a walker? What about hot people who have more than one disability? How does it work if a person’s disability is invisible? If they’re hot, and you only find out about the disability later, is that sad too?

I spend a lot of time talking and educating about people with disabilities and our sexualities.

So, I’m here to tell you: Your statement about people in wheelchairs is just factually incorrect. So yes, you, the fact-maven, are steering people wrong.

Business Insider called your tweet insensitive. I think it goes way beyond that. When talking about negative comments about disability and disabled people, words like sensitivity, compassion, and caring get thrown around a lot. I’d like to see more people talking about respect and knowledge.

It’s not primarily sensitivity you lack here—frankly, I don’t care all that much about your moral compass–(though your decency does leave something to be desired) but plain old-fashioned know-how. Sorry if that’s painful to read, but that’s just how it is. Okay, I’ll stop telling you you’re wrong—at least for a few paragraphs.

Or, maybe the problem here is that you can’t imagine how someone who uses a wheelchair could possibly have sex? So little imagination, Ken!

There’s really not a limit on what sex is, or how to do sex, for anyone
And, there’s no limit on what sex and sexuality can be for people with disabilities. Please pay particular attention to the first three myths, and the facts that go along with them.

Also, a person’s being in a wheelchair actually doesn’t tell you much about their physical abilities. It doesn’t tell you how they can move their bodies, which parts of their bodies they can feel, and it certainly doesn’t tell you what they like to do in bed. Some people who use wheelchairs are able to walk short distances, or are able to use their legs if they’re not standing up. It’s not always the case that people either walk or not-walk. And seriously, is being able to walk necessary for sex?

I’m not sure if you knew this, Ken, but people with a whole range of disabilities date and some choose to get married.

And know, these generally are not sexless relationships, as people often assume they must be. At least, couples in which one or both partners are disabled are no more or less likely to have sex, or have sexual issues, than couples in which both partners are nondisabled.

Just because you find wheelchairs to be impairments to people’s sexiness, doesn’t mean that other people do. I’ve heard that this sexy calendar of people with disabilities is “hot as hell.”(I’m blind, so can’t confirm that personally.

Plus, some people find other people’s wheels hot!

Sex with someone who has a disability can even be the best sex you could be having.

Or, maybe you’d like to try something a little more daring? Leroy Moore has reclaimed drooling, something seen as infantile and gross, something Leroy personally was encouraged to hide and feel ashamed about, as something sexy and intimate.

The simple fact is: People with disabilities are sexy, with and without their mobility or other assistive devices. Okay, I’m being a little hyperbolic; after all, not everyone is sexy in the same way, and we’re not all going to find the same things sexy. So, let’s just say it this way: A wheelchair (or cane, or crutches, or oxygen mask) doesn’t take away anyone’s hotness.

Perhaps it would help you to watch some people with disabilities talk about their sexualities Or maybe you’d like to see some positive and sexy images of people with disabilities.

You know, Ken, there’s a funny irony here. Ending up in a wheelchair, of any of the experiences that makes someone a minority in our society, is the experience most likely to happen to you. No, that’s not a threat. It’s reality. And, if it’s not something that lands you in a wheelchair, it could be any number of physical, psychological, or mental impairments.

Your skin colour, ethnicity, or country-of-origin aren’t going to change. You’re unlikely to have to live below the poverty-line (unless you make some incredibly bad investments), but you could well develop a mental, psychological or physical impairment, either temporarily or permanently. Most people consider able-bodiedness to be temporary, anyway. Research the abbreviation TAB if you want to know more.

You’re well-known for your smarts, but that wouldn’t much help you if you did become visibly disabled. I promise you people would treat you a lot differently. “Isn’t it sad what happened to Ken? He used to be so smart/capable/accomplished/successful/other positive attribute.” People who didn’t know you from Adam, who saw you on the street would be admiring, condescending, overly helpful or actively not helpful enough…

Does this sound bleak? I don’t mean it to. There are lots of awesome people who don’t see disability as such a big deal, who see the whole person, not just the disability.

Sadly, you’re not one of them.

I’ll finish simply:

Don’t do that again.

Take the tweet down.

Apologize. (Can you do so as elegantly as George Takei?)

And, if you’d like to know more, you’re certainly welcome to browse this resource list, and get in touch if you’d like to learn more.

Yours in knowledge,

Robin

Sep 072014
 

I promised in this post to give you a rite-up of Mara Levy’s workshop at Catalyst Con and I never did. I’m excited by the variety of new voices talking about sexuality and disability, and the unique perspectives and experiences they’re all bringing to the table, so want to share those with you whenever I can.

Mara 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 for people who are disabled, sex is generally considered unimportant, or even irrelevant. Add to that 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 with physical or cognitive limitations.

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: They need to listen, rid themselves of paternalistic attitudes, 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—all 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.

Aug 232014
 

There are, for me, anyway, few good reasons to get up early and leave the house on a Saturday morning, but Jessica Naslund’s workshop, Healthy Relationships and Sexuality: A Systemic Approach to Supporting People with Cognitive Disabilities, at The Woodhull Sexual Freedom Summit was definitely one of them. I learned so much in this workshop. Even now, a week later, reviewing my notes and preparing this post, I’m bubbling over with enthusiasm. I’ll share some of what I learned, and thoughts that came up around it.

Here’s the 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 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 she puts it, Jessica works with a population no one wants to talk about—intellectually and developmentally disabled people—around an issue no one wants to talk about—sexuality.

This isn’t a population we can afford to ignore, or an issue we can afford to sweep under the rug. First of all, people with developmental or intellectual disabilities do have sexualities; everyone does. Secondly, people with developmental or intellectual disabilities are 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 emphasized that people with developmental or intellectual disabilities need to be taught 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 someone 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 someone is invading that privacy. 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.

People with developmental or intellectual disabilities are often in very regimented treatment and care systems where they aren’t given privacy, even to just be alone in a roomlistening to music or watching TV for a while, and 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.

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 respected before.

It’s so important that intellectually disabled people be given the opportunity to make choices. Even when things have to be done, or they’re not 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 someone doesn’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. Educators can teach not only “don’t hit” but “this is what someone looks like when they’re uncomfortable.”

Many people with intellectual or developmental disabilities need things 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 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 how to convey amorous feelings without overwhelming the person they have those feelings for. But, using the right learning tools for each individual, they can learn.

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.

There are a lot of issues here, and I haven’t even touched on the full range of what Jessica discussed. Systems approaches—more than one—are what will help us tackle these issues—help us reduce abuse and restore humanity to many people.

The systems approach isn’t just one system. It includes, among other things, 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.

For example, 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 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 away.

Another part of the systems 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’s 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 Down’s. 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 facts—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. People 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. 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…I think you get the picture.
So, I thought that the first step should be a visit to the doctor. But no, there should be a step before that, one that will help us figure out whether there is abuse, whether there is an infection, or whether there is something else—and one 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 thinking about 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 non-comply with things– 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 052014
 

What do touting the immensity of the clitoris and making recommendations on physical accessibility considerations for event organizers have in common?

At first glance—nothing.

I probably shouldn’t be telling you this, but as someone who talks about both sexuality and disability (separately and together) I sometimes, (okay, I won’t lie, frequently) feel like I’m having a professional identity crisis that’s never going to end. Grow up and devote yourself to disability and accessibility, I tell myself, or enjoy talking about sexuality and sexual pleasure. I don’t care which, but you have to pick one.

Disability is tangible; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers, any of them physical 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.

So, you see, I can’t separate the two. I can’t because sexual pleasure isn’t just about individual bodies’ enjoyment, and disability rights isn’t just about breaking down institutional barriers.

As a visibly disabled woman, am I not breaking down basic barriers of what is expected from disabled people, and what is deemed “appropriate” conversation, every time I publicly mention bodily autonomy or the nearly limitless potential we all have for experiencing pleasure?

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, leadership 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.

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 escape the conversation, 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 talk about it, 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 be devoid of 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 no happy medium?

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.” 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.

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 access it, 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 (though I’ve just recently learned 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 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 get snuffed out.

How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have a self-awareness born of necessity 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. Having a disability can also result in people needing to do sex 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.

Feb 202014
 

In the first part of my commentary on “porn for the blind,” I suggested that visual forms of porn don’t retain much of their eroticism if they’re made accessible. Erotic picture does not necessarily equal erotic tactile picture.

This isn’t because blind people’s erotic sensibilities are any different from those of people who can see (the continuums of what people find erotic are the same whether a person can see or not) but because the frame of reference is different. The whole of a visual image is more than just the sum of its parts.

Today, let’s find out what happens when people give audio descriptions of visual erotic material.

As always, I’ll be as objective as I can, but I’m only one blind person among many, so reactions may vary.

PornForTheBlind.org is a crowd-sourcing site at which people can upload their narrations of mainstream porn trailers from around the net. There are no guidelines for these descriptions, and no obvious forms of oversight for what is uploaded.

Listening to the handful of descriptions I was able to get through, I was bored to tears, and ready to go do the laundry or some other equally mundaine, non-erotic task.

This site falls into the category of interesting, not erotic. Describing what video porn looks like is not the same as consuming it as porn. The erotic elements are not there.

Granted, each narrator describes differently (there are no guidelines or even guiding principles for describers) so the quality varies. But, while some were narrated more helpfully than others, none of the descriptions floated my erotic boat.

What does lacking erotic details look like? No coherence, lots of ums and uhs, no emphasis on using sexy or descriptive language, no panache, and most of the narrators sound bored out of their skulls. The majority of the narrators speak in a monotone, and don’t seem to have practiced their spiel ahead of time.

Perhaps consequently, many of the descriptions are funny (not erotically funny), and the funniness is more painful than entertaining. The language used is often clinical at best, and missing colour supplied from adjectives, setting descriptions, and sexual slang.

this article explains the nature of the material on porn For the Blind this way:

…there’s something hot about the absolute amateur quality of the submissions, just like a homemade snapshot capturing real sexual energy can have more impact than a studio photograph of a professional model.

If there’s something hot here, I’m missing it. This writer may be confusing amateur with raw. (She is also, I suspect, assuming that everyone describes with the rich detail she uses; Her descriptions (which she provides links to in her article) are, so far as I can tell, the exceptions, not the rule.) She sounds like she’s enjoying herself, and does supply descriptive detail.

There is definitely something raw about the porn being described, but the descriptions lack “sexual energy” and are so stark E.G. (“there is a man lying on a couch; a woman is on top of him; they’re having intercourse.”) that any raw sexiness is edited right out.

Again, we have a situation in which making the visual genre accessible to people who can’t see strips much of the erotic appeal out of the content. With Tactile Minds, I assessed part of the problem as being the presence of too much stylized detail. With Porn for the Blind, I believe we have too little.

were the narrators of these clips to script their narrations, using words which set the stage and describe the mood of the activity as well as what is happening, I think we’d have more of that sexually raw content available in the audio. As it is now, we’re just hearing what happens on the screen. This is not the same watching experience as that which people watching it firsthand get; They’re absorbing the mood of the setting, the characters’ actions and body language, all with their own concepts of what is sexy informing their reactions. While word choice in narrations would necessarily influence the hearer’s perception of the scene (we’d be getting the narrator’s perception of what’s happening) it would add more in the way of interest and appeal than what is currently there.

So, the description I quoted above might then become: “A man is reclining on a leather sofa; he lies still as a woman straddles him and vigorously fucks him.” or, it might read: “A man reclines on a leather sofa, arching his hips up towards the woman who straddles him, her long hair brushing his chest as their pelvises rock together. (No, I’m not going to sign up to describe porn any time soon, but hopefully you get the picture.) :)

It may be too that this genre of porn really cannot be narrated. Listening to these descriptions reminded me of the time I watched a full-length artsy erotic film with some friends, and the machinations they went through to describe to me what was happening on-screen left all of us in peals of laughter. The film was essentially a montage of elaborate sexy scenes that switched about every minute. The scenes in a 30- to- 45-second trailer flip even more rapidly, and with less context, than those in a full-length film. Keeping up with these flips, plus supplying evocative information, is a challenge for any person trying to describe, and if it is going to be done, should probably be done by someone who has experience with providing audio descriptions.

So, in short, Porn For the blind is an interesting exercise the result of which ends up pretty far away from the intent.

Conclusion: Not erotic, not entertaining, and (because of the generally inexpert description) not even overly educational as to what happens in porn.

Next time, a review of a site with exclusively audio content.

Feb 132014
 

Next month I’ll be giving a presentation at catalyst Con on the Nuts and Bolts of Accessibility. I’m super-excited about sharing this knowledge with people in sexuality fields. It’s an exciting balancing act; walking the tightrope of educating while not instructing. In putting this presentation together, I’ve worried a lot about how to not make it sound like there’s just one way to serve the needs of all disabled people, or even all people with one kind of disability because there’s never just one way, beyond the one way of being respectful, caring, and treating all people like people.

Yet, one way is often how it’s framed, whether an event site is labelled “accessible” without specifying for whom, whether a sex toy is touted as being good for the “differently abled” (that term is like nails on a chalkboard for me, but I’ll explain that in another post), or some other all-encompassing statement.

Over the next few weeks I’ll explore here how we can talk about disability and accessibility both inclusively and expansively.

The nuts and bolts of accessibility aren’t just one thing, and they’re not literal. I won’t be handing out monogrammed Allen wrenches at the presentation to go with leaflets proclaiming “10 steps to make your service accessible.”

But nor is accessibility wholly theoretical.

Much of (though certainly not all of) being inclusive of most minority populations falls under the umbrella of developing compassion, recognizing and working with prejudice (our own and others), challenging stigma (our own and others’), and specifically not dictating what people should do with their lives (sexual or otherwise).

Making our spaces and services available, however, very often requires us to change what we do, not just how we think or act. It’s that “what to do” part of it I want to help people with.

I’m excited about talking to people at Catalyst, in particular, I think sexuality professionals are already perfectly positioned to incorporate accessibility thinking and action into our work. We’re already supporting people around deeply stigmatized parts of their lives. We already work with people as individuals and reject one-size-fits-all approaches.

The balance here is maintaining that individualized approach—not all people will need or want the same kinds of accommodations or assistance–while bringing our spaces and services in line with accessibility guidelines.

Accessibility is more of a practice than a philosophy.

We can be as inclusive of disabled people as we want, but if our Web sites look like so much nonsense to a screen reader, or our business is at the top of an entire flight of stairs (or even just one step), or the group activities we’ve planned for our empowerment retreat require listening, reading, or moving around, there will always be a group of people, or more than one, that will be excluded by the services we have to offer.

While what we have to offer cannot always be accessible to everyone—a painting class isn’t going to be much use to a blind person (though it can’t be assumed that all visually impaired people can’t engage in visual arts), and a talk deconstructing feminist philosophical writings might not be comprehensible or enjoyable to people with certain intellectual disabilities—most of us have services that can be tweaked to be available to pretty much anyone who might need or want them.

Establishing an accessibility framework or universal design of our programs or services means that any tweaks for individual customers or clients are just that, tweaks we’d make for any individual because of their marvelous individuality.

One thing I plan never to do, or at least not without a lot of thought and self-questioning first, is run disability simulations. A common disability awareness tactic is to have people don blindfolds, or move around in wheelchairs, supposedly to give them a sense of what it’s like to be blind or mobility impaired, or any other disability they try to simulate.

This is one of the most overused, and, in my opinion, useless and even harmful, “awareness” strategies.

We cannot learn what it is like to be another person, to have their feelings, experiences, histories by taking on one aspect of their existence for a short period of time. These so-called awareness activities simply give the experience of what it’s like to be oneself, without the senses or abilities one usually relies on. Any fear, nervousness, or trepidation a person feels cannot be attributed to the disability in general or to people who have that disability, but to their experience of temporary loss. Put more clearly, your experience of suddenly not being able to see your surroundings is very different from my experience interacting with my surroundings as a blind person, something I’ve done for twenty-eight years now.

What immersion exercises like these can do, I think, is make people more aware of environmental barriers.

To take another context, whenever I read about
We don’t need to do special exercises to develop this awareness. Understanding what being in a wheelchair in your place of business is like could be as simple as wheeling yourself around on a wheeled office chair, not to see what that is like on a feelings level, not to claim any sort of kinship with the experiences of people who need to use a wheelchair all or some of the time, but to see if you can still reach things, move through doorways, get to all parts of the room or building—in short, can you do everything you could do if you were walking?

I think impairment-immersion exercises are about as useful for raising awareness of the human condition as, say, homelessness tourism is for understanding homelessness. Spending a night in a shelter or hanging out with homeless people pretending to be just one of the guys can’t give one the sense of the days, weeks, months, or even years of being homeless (not to mention the days, weeks, months, or even years of circumstances that led up to that homelessness). All it can do (and this is a pretty significant all) is give politicians, and other decision-making folksa sense of how the services work, and of how society in general works for (or as is usually the case, against) homeless people.

When people do supposed disability immersion exercises, the response is often nervousness, titters and laughter, and a general sense of either silliness or disorientation. There are more respectful ways to break tension, and more useful ways to start dialogues and promote change. Much better, I think, to have intelligent conversations and use creativity from the vantage points we already have to understand our spaces and activities differently.

Stay tuned for more thoughts, and a few tips for starting to think about practical accessibility concerns.

Dec 112013
 

Porn for blind people. Does it exist?

With the rich variety of erotic materials available to everyone who wants to access them (and knows where to find them), is specially-developed content necessary?

Erotic material comes in a variety of formats–film, audio, and written word to name a few–and is marketed in myriad ways. I suppose then that it’s no surprise to find erotic material marketed as being “for the blind,” though it’s a bit of a misnomer as plenty of people with visual impairments do consume and appreciate some visual materials.

What I have seen of “porn for the blind” has shown me that visual forms of erotic material do not translate well. In other words, it makes much more sense to focus on the development of written and oral erotic content if one wants to make sure that blind people have access than to try to make visual material accessible.

What I’ve seen of these attempts has either resulted in a substandard product or in a product that is interesting, but not overly erotic.

Perhaps the most well-publicized “porn for the blind” is the book of tactile erotic pictures, Tactile Mind.

I got to see this book a couple of years ago, when I visited Come As You Are in toronto. This book of photographs turned into tactile graphics, complete with Braille descriptions, got a fair bit of news coverage when it first came out. Unsurprisingly, the appelation “porn for the blind” came from this media coverage.

I confess when I first learned of this book I was dubious. I have been blind since early childhood, and have never gotten much more from raised drawings than a sense of shape and placement. Raised graphics were what I used to learn about Venn diagrams and geometric shapes, not about sexuality. No, we didn’t have raised anatomy charts in sex ed class though we probably should have—particularly if they had been rendered with the attention to detail found in this book.

These were by far the most detailed raised images I’ve ever seen.

I was also suspicious of the porn label. Pornafter all, is meant to arouse the senses. I had my doubts that raised images could have the same erotic impact as pictures do on many people who can see them. Turning two-dimensional images, with shape, line, angle, colour, lighting, et cetera, into raised line drawings means losing most of those characteristics, the colour, shading, et cetera, that make the picture more than just a picture in the first place.

I doubted these tactile pictures would have any erotic impact at all.

Since I had unexpected access to the book at Come As You are, though, and time to peruse it, I was able to take a good look. It is, incidentally, a really freeing experience to be able to sit in a store’s reading corner and read a book. That’s not an experience I get very often at all.

I scrutinized this one from cover to cover.

Tactile Mind is a spiral bound book of 17 tactile images with Braille descriptions of each one. Also included is a print copy of each image. Artist Lisa Murphy selected seventeen of her photographs—one of which is a self-portrait–and reproduced them in raised form.

The most important difference between the way a blind person processes an image and the way a sighted person processes is the amount of information that can be taken in at one time. I can only touch one part at a time—two if I use both hands. The amount of detail in these photos made creating a mental picture really difficult. My fingers flitted back and forth between the description and the image, trying to make sense of each individual part, trying to understand what I was feeling.

Did I find these images erotic? Some of them. The simpler the photograph, the more I could appreciate the spare symmetry of lines and curves, or the grace or erotic potential in body position. The masks and props are part of an artistic world I cannot share in; when translated into tactile form, they detract from the picture rather than enhancing it.

Though the photos were taken specifically for this book, they were not appropriate photos for this project. Murphy’s desires, to make her models feel comfortable with being photographed nude by decking them out in silly costumes, and creating a book of tactile pictures that can be appreciated by blind people, don’t match. The more detail put into a tactile drawing, the less most people reading that drawing with their fingers are going to get from it.

Having said that, the level of tactile detail in these images is impressive. Textural differences bring more life to images, though not necessarily more eroticism. Beards and pubic hair were textured much as hair would be. Some skin was smooth while other pictures showed the dimples of cellulite.

Overall, though, with a few exceptions, these images were interesting to me, not erotic.
For me, any eroticism in this book came from the suggestion rendered by reading descriptions. There was just so much going on in the images, that the words were more comprehensible, more evocative of mental pictures than the photos themselves.

So, do we need to render visual forms of erotic material to be accessible to blind people?

I don’t think so. I just don’t think they translate. The kinds of tactile detail put in this book still don’t mirror the kinds of tactile detail one would associate with interacting sexually with someone else, or with oneself. There’s a closer connection between pictures and everyday erotic interactions for people who can see the pictures; there’s not as much translation that needs to happen.

Does this mean that what all blind people find erotic is the same or that there is no benefit to making erotic images tactile? Certainly not!

To Be Continued…

Jul 022012
 

Various projects have had me culling the Internet for information, stories, and policies and practices related to sex and disability.

I’ve been putting together resource lists, including this one, and preparing to speak at the Catalyst conference in September.

I’ve spent a lot of time asking myself why exactly it is that I’ve chosen to talk about sexuality and disability.

This is some of what I’ve come up with:

Disabled people are more visibly present in society, and the numbers of people with disabilities seems to be growing. Growing too is the sense that while we live in a sex-obsessed society, the sexuality of entire populations has been ignored and belittled. We talk about sex and disabilities because the topic intersects with so many things we’re already talking about; healthy body image, self-esteem, accessible sex education for all. We talk about sex and disability because it is the birthright of every single person to choose how they express their sexuality. We talk about sex and disability because of the bad stuff, including a higher than average number of sexual abuse survivors in disabled populations. We talk about sex and disability because ability is a temporary condition for most people, and disability is an invisible condition for many more.

But we also talk about sex and disability because of what these discussions can teach us about sexuality in general. The mainstream conceptions of sex are limiting to most of us. Tools often utilized by people with disabilities, such as creativity and adaptability, can free us from these limits.

After reading this story, I truly do know why I do this work. Read it for yourselves. It’s worksafe, horrifying, beautiful, and an illustration of the ways disability policy and sexuality have intersected over the years.

It’s also, I believe, a call to action.