Jul 152015
 

Last month I attended the 37th Annual Guelph Sexuality Conference.

The lineup was amazing, and I learned so much – about consent, about community-based research with youth who have HIV, about how to use gender-neutral language to talk about sexuality and relationships – and about sexuality and disability.

Kaleigh Trace presented Desirability as Resistance: Reading Disability Differently, the presentation title that finally got me to stop dithering and register for the conference.

I had just read Kaleigh’s sexy, funny, thought-provoking book and was excited to meet her and learn more from her.

Workshop Description:

The aim of this workshop is to critically examine our internalized (and often ableist) ideas about what it means to be disabled, and rewrite these constructs by looking at some of the work being done by radical disability activists today. In particular we will examine disabled activists who work to be visibly sexual. As such, this workshop will benefit all folks who work with people with disabilities and any individuals working in sex ed. through a look at disability and sexuality.

One of the beautiful things about this session was how open and comfortable it felt to be there. Kaleigh got her participants laughing, and gave us plenty to think about, but where she really shines as a presenter is in presenting enough information, and asking the right questions, to spark open and emotionally safe participant conversations. I think we learned as much from each other as we did from her, and most people felt able to share experiences and opinions that made them more vulnerable to the rest of us. Kaleigh also does not set herself up as an authority. She was very clear with us that she speaks about what she’s learned and experienced, from her perspective as a disabled white cisgender woman – hers are not the only opinions or lived realities.

Kaleigh introduced us to the justice model for understanding and talking about disability. Two of the most well-known models of disability are the medical and social models. The medical model focuses on “fixing” disabilities, and people who follow it tend, in general, to ignore the expertise and abilities of disabled people themselves. The social model teaches that society’s prejudice and lack of physical access and acceptance is what disables people, but fails to take into account that many people are disabled by pain or illness, individual situations that society, as a whole, can’t do anything about. A justice model of disability, helps us look not only at the social roots and causes discrimination and exclusion of disabled people, but also the individual histories, experiences, and identities that shape each person’s life.

We talked about desirability, about how we’re taught that disability is the opposite of beautiful or attractive – that any body that doesn’t conform to beauty standards is automatically considered less than. Beauty standards are different from culture to culture, and have definitely changed over time. Right now in Western cultures, beauty standards are hinged on the ability to conform, to be symmetrical (or, at least, to be asymmetrical in a chic way), to be willing to put your body on display in some way (not necessarily through showing skin), to move and present ourselves only in ways that are pleasing to other people (and it seems to be assumed that everyone will find the same, or similar things, pleasing, appealing, or even sexy).

Kaleigh took us on a quick, informal tour of what desirability has looked like – at least the forms of desirability that have been passed down to us through paintings and, later, photos – through the last 500 years in Western cultures, a look she summarized as “people in hats and dresses.” These looks are modest by modern standards. They also force bodies to conform, by covering them up and making them look the same. It’s hard to see certain kinds of disability and difference when a body is covered by fabric, sometimes from head to toe.

The kinds of clothing that are seen as desirable now, and over, say, the past sixty years, bring attention to the body, and show differences between bodies.

What we find attractive to look at hasn’t quite caught up with this trend, so that when people see more of a disabled or different body, and it doesn’t fit into the beauty or sexual attraction standard, they clasify it as ugly, or even nonsexual.

When disabled people talk about sex, especially about their own sexuality, when we change the stories about what and who is desirable by including ourselves or other disabled people, we’re turning our desirability into an act of resistance.

Resistance is a tricky thing. We talked a lot about what it is, what it looks like, and whether we actually want to do it.

Do we want to challenge stereotypes of how we’re supposed to behave or what we should say just for the sake of challenging stereotypes?

If, in resisting these stereotypes, we’re acting in ways that have us not being true to ourselves, are we really resisting what’s expected of us? Or, are we just performing a different kind of conformity?

Further Reading

Kaleigh’s book: Hot, Wet, and Shaking: How I Learned to Talk about Sex

Some of Kaleigh’s picks for “rad disabled activists”

More sexuality and disability resources.

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.

Jul 052015
 

June 26 was a history-changing day. Marriage laws in the U.S. finally caught up with reality – many people’s reality, anyway.

This ruling opens up a whole new world of fredoms. It solves some of the problems that transgender people wishing to marry have faced up until now and gives same-gender couples the option to marry if they wish.

But the work, the struggle, the heartbreak isn’t over yet. more than half of the states still allow LGBQ and transgender people to be discriminated against by current or potential employers. Incidents of violence against LGBQ (lesbian, gay, bisexual queer) and transgender people is still frighteningly
high.

The legal battle aroud marriage equality has been about making sure that same-sex couples have the same rights and protections as mixed gender couples.

But, for many people with disabilities, no matter what either partner’s gender is or isn’t, marriage can mean the end of the same kind of safety and security other married couples count on. Not only do these couples have to contend with bias against, and disbelief of their relationships, but their financial security and access to health insurance is often removed or limited when they marry.

Love doesn’t always win either for folks with disabilities, especially for folks with intellectual or developmental disabilities. The love of and between disabled people is often discounted.

Love doesn’t win when people don’t take your desire to get married seriously. Love doesn’t win when you marry, but the housing that’s supposed to help you be as much a part of the community as possible doesn’t let you live together. Love doesn’t win when your wish to spend time with the person you love is seen as “cute,” or childlike. Love doesn’t win when you want to be recognized as a couple and do the things other couples do, whether you can legally marry or not, but the people around you, the people who are supposed to be supporting you, won’t let you do that.

Paul and Hava Forziano got married in 2013. Finding a place where they could live together proved to be a challenge.

It’s worth taking a good look at why the group homes where Mr. and Mrs. Forziano lived before marrying thought that helping them live together was “unprecedented,” “impossible” and “fraught with difficulties”.

IN defending these organizations, the legal team cited Mr. and Mrs. Forziano’s Individualized Service Plans (ISPs) as reasons why the couple could not live together and be adequately served by either group home. They label these plans as “complex treatment plans.”

An ISP is actually a “written personal plan, or blueprint, for a person with developmental disabilities that summarizes the help he or she wants and needs to achieve his or her own aspirations in life.”. Meeting residents’ medical and supervision needs is only part of the picture here. Actually meeting the requirements of Mr. and Mrs. Forziano’s ISPs would mean finding a way to help them live together, even if that meant referring them to another agency.

Not meeting Mr. and Mrs. Forziano’s “aspirations in life” – to live together as most married couples in North America traditionally do – is, I believe, backwards thinking. This is not what the community living movement is all about.

The wonderful part of this story is how supportive Paul and Hava’s families have been of their relationship, and of their desire to live together. Disabled people, especially developmentally disabled people, don’t often get that kind of support from their families.

Bill Ott and Shelley Belgard also have lots of family support. They’re not married legally, as doing so would reduce Shelley’s access to needed health insurance, but they had a commitment ceremony and live together. They live in a different part of the country, and their living support needs are different, so getting to live together after their marriage wasn’t the same sort of ordeal it was for Paul and Hava Forziano. Bill and Shelley had a tonne of support for being together, but still, when Shelley’s mother heard about their engagement, , her internal response was: “This, too, shall pass.”Bill and Shelley proved her wrong, and the couples therapist they worked with also went to bat for them. So, in addition to everything else Mr. Ott and Ms. Belgard had working for them, they had someone from the healthcare field willing to see that their disabilities didn’t diminish their love or their capacity to be together. Read the rest of their heartening and smile-inducing story here.

And one more story, among the thousands out there, most of which haven’t been told:

I won’t tell you much about the two men in this story – the two men who loved each other. You need to read this for yourself. It’s a capsule of discrimination against gay people, dismissal of disabled people’s wants and desires – and of love – and a reminder of this countrys history of cruelty and violence towards disabled people, especially by the folks tasked with supporting and helping them.

Here’s the story. I recommend having tissues handy.

Love did finally winfor these men.

Further Reading

Author’s Note

Referring to the couples mentioned in this post As Mr. and Mrs. Forziano and Mr. Ott and Ms. Belgard was intentional. I wanted to show respect for their relationships – their unions. Using more formal titles, and more formal language in telling their stories, was also a way to show that their stories are important, that we shouldn’t take them lightly. Since I don’t know them, consistently using their first names would have been overly familiar, and would have made them sound like children, not the adults they are.

Jun 302015
 

Welcome to the Ready, Sexy, Able news round-up.

June brings us news of a disability-inclusive orgy in Toronto, a sex and relationships magazine for people with intellectual disabilities in France, a “Sexpo” for disabled people in Australia, an advice column for young people experiencing anxiety, and so much more.

Enjoy.

If you know of a news or opinion piece published in June that you think should be on this list, please get in touch through the contact information at the bottom of the page.

Danielle Sheypuk

Sex party for people with disabilities comes to Toronto in August.

 

News, Opinions, and Education

Magazine on love and sex for people with mental disabilities

Ain’t I A Girl/Woman, Too? My Presentation on the Sexuality & Womanhood of Disabled Females at SC Campaign

One Canberra Sex Shop at Feel the Vibe Sexpo for People with Disability

Travis Mathews Talks Tackling Disability and Sexuality In His Upcoming Feature ‘Oscillate Wildly’

We Must Welcome Those With Disabilities

As Someone With a Disability, I Disagree That ‘The Undateables’ Represents Disabled People as a ‘Source of Comedy’

Love and disability: ‘inter-ability relationships’ conquer stereotypes

Sexual healing

Sex educator on a mission to break down barriers around disability and sex

Love, Anxiety, and Fear

Jun 252015
 

Cara Liebowitz of That Crazy Crippled Chick has some powerful things to say about beauty standards, expectations, and what many disabled bodies really looke like.

IN her latest blog post, On Being “Ugly Disabled”, Cara tackles the idea that some disabled bodies are seen as acceptable, even beautiful (physical disability as a fetish is a whole other discussion point), while others are seen as ugly.

She starts out with her trademark honesty:

“I am not one of the “pretty disabled”. I may have been close to it, once, but as I’ve gotten older and my disabilities have changed and multiplied, I have quickly moved away from any hope of “passing” as either non disabled or “prettily”, “acceptably” disabled.”

Cara challenges everything we think we know about what it means to look professional, to look like a woman, to look like other people’s ideas of what disability should look like. She challenges the idea that disabled women are only beautiful if we’re delicate, elegant in the way we move, pretty, and quiet.

She also challenges the idea that disabled people need to spend valuable energy looking “normal”: “I do not sit up straight and my posture becomes worse when I am tired or excited, which can lead to me sliding out of my seat or propping myself up with my arm to keep from falling completely over to the left (my weaker side).” (I’d hope no one should suggest that Cara should always keep from getting excited so that she can sit up “properly”.)

You can read the rest of Cara’s excellent post here.

For more of Cara’s bold, direct thoughts on disabilities and beauty standards, check out her essay Palsy Skinny: A Mixed-Up, Muddled Journey into
Size and Disability
in Criptiques.

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.