Nov 062014
 

I first learned about Diane De Vries almost fifteen years ago when I was researching sex and disability (wasn’t much written about that then) and stumbled across this book. diane’s story was so amazing to me because I’d never heard people theorizing things like self-esteem, body image, and sexuality specifically around disability, and because the essay about her talked so candidly about how she navigated living with a body that not only behaved diferently, but looked diferent too.

Recently, I found this short documentary about Diane, showing diferent aspects of her life than those I first learned about, and in her own words, too!

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.

Jul 122014
 

This week, The Atlantic published Should We “Fix” Intersex Children?

When I hear stories like the ones told here, I want to find those children and cuddle them; then I remember that I’m so heartbroken because their bodies were invaded and hurt without their say-so,, so it’s better not to want to cuddle, but to tell them I’m so sorry that happened.

Actually, I want to offer comfort to any child who’s had medically unnecessary surgery. I’m not a medical practitioner, and most definitions of medical necessity out there revolve around what insurance will and won’t cover, so I’m defining medically necessary for my purposes, as any procedure needed to save a person’s life or significantly improve their functioning. So, as in the case of Aliya’s son, the urethra not being in the usual place isn’t a reason for surgical intervention, unless the urethra doesn’t function in a way that’ll carry urine out of the body. And no, not being able to pee standing up, in the “manly” way, doesn’t count as reduced function.

Surgery is stressful. Surgery is traumatic.

Not understanding what’s happening to your body is terrifying, and that fear doesn’t leave once the bad time is over.

It doesn’t matter whether a child can consciously remember the surgery. It, like abuse, leaves its imprint on the body and psyche.

This isn’t just rhetoric here; I know what I’m talking about.

Between my birth and shortly after my fifteenth birthday, I went through over 20 surgeries. Most of them were on my head and face. None of them were genitally related. I remember few of them. All of those surgeries were necessary to my survival and my functioning, but I also know the toll they’ve left on my mind and body. There are only so many times you can take a body apart and put it back together again before it just doesn’t feel right or function cohesively.

To leave that toll just because a child’s body doesn’t conform to arbitrary gender or attractiveness standards is violence.

Adults are free to get whatever cosmetic or medical surgeries that aren’t strictly necessary they want. Yes, we could fault beauty norms for pushing some adults into thinking that they have to have surgery to improve themselves, but ultimately they have choices, and are free to exercise those choices.

Children aren’t given those choices. Babies and very little children aren’t able to make such choices. Children’s bodies are growing and changing—should not be interfered with unless interference is needed for survival and healthy growth. If it’s possible to facilitate a child being able to breathe, talk, walk, and otherwise move their body without inflicting lasting harm, then certainly that can and should be done. That’s what I mean by healthy growth.

”The journalistic integrity in this article, presenting as many views and realities as possible, is wonderful, but I am not swayed.

We must not take the bodies of little children apart just to put them back together the way we think they should go.

The validation for surgery on intersex babies came from a psychologist named John Money.
This was the result of his experiment with which doctors have justified operating on intersex children.

One of the medical establishment’s goals is to prevent disability and illness. The Hippocratic Oath commits healthcare providers to never do harm.* How then can medicine, as a whole, ethically justify procedures that can cause physical or psychological disability.

Medically unnecessary surgery disables children. It can lead to chronic pain, nerve damage, and injury as a child’s body grows out of the procedure–physical disabilities that wouldn’t have been there had the surgery not happened. Gender dysphoria, and the sense of bodily violation, can lead to mental health difficulties like anxiety, depression, and thoughts of self-harm. Yes, medical treatments can be experienced as violations. That’s why I call it medical violence.

We should not be disabling children. The fact that the justification for disabling children in this way came from an experiment that harmed a child–a human being–so greatly is horrifying.

As to whether children should have genital-normalizing surgeries to protect them from bullying: People—children and adults–will always, always find something to bully about. That’s not going to change. Submitting a child to surgery with unknowable results isn’t going to change social structures or the bullying problem. (I was going to say that surgery wouldn’t change human nature—which is also true—but I believe that the pervasiveness and escalation of bullying have much more to do with social structures than human nature.

I’d argue too that every child deserves privacy, including privacy from other children, so that if they don’t want to, or don’t feel safe with, showing their bodies to their peers, they don’t have to. It’s ridiculous, actually, that on one hand adults preach to children about modesty while on the other hand children are not given the chance to practice any form of modesty if they wish too.

I should clarify here that I don’t think there’s anything bad or immodest about bodies, or about being unclothed around other people in contexts where that makes sense—like locker rooms. What I take issue with is the contradictory messaging children are given around privacy, and the lack of options for children to make decisions around their own bodies. It’s shameful how little bodily autonomy children are allowed.

The tendency to bully around difference is a massive topic requiring another post, but again, people will always find difference, even if it’s not staring them in the face.

So, if we don’t do genital surgery on intersex children, what do we do about assigning gender? I don’t know. I’d like to think that we could just raise children in a non-gendered, or maybe a multi-gendered, way until, or if, they choose a gender for themselves. Most Western and westernized cultures are so dependent on the gender binary, for everything from naming children to assigning them to sports teams and other recreational activities, that my wee brain just can’t quite envision how these cultures could move past this tendency to raise children without actions that lock their existence into a gender binary. I wish I had that kind of expansive imagination, and even more that if I had that imagination it could make real cultural change.**

The only thing I know for certain is that hurting children is bad, and that having a medical degree and seeing genitals that don’t fit what your textbooks tell you is normal is not a free pass for causing hurt.

*For a modern version of the Hippocratic Oath, take a look here.

** Someone did have that kind of expansive imagination.