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!

Nov 052014
 

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

Last month was Domestic Violence Awareness Month. IN all the awareness-building, all the activism and solidarity online, I saw almost nothing about people with disabilities who are victims and survivors of relationship violence.

This absence is startling when you consider that people with disabilities are statistically more likely to experience relationship violence than nondisabled people. (And considering that what we know about the prevalence of relationship violence for people of all abilities is only the tip of the iceberg, that’s scary.)

It’s not so surprising though, that disabled people are mostly absent from awareness campaigns, when we consider that disabled people are often invisible in society, and that invisibility is often what makes intimate partner violence (or violence of any kind) possible.

When an abuser can physically control if their victim leaves the house, and whether they get to talk to anyone, or can contradict their partner’s words and be believed because their partner has trouble communicating or sometimes loses touch with reality because of their mental illness, the incidence of violence against people with disabilities becomes even more invisible.

I recently read a small, qualitative study that looked at the impacts of intimate partner violence on the lives of women with disabilities. (As with research of nondisabled people’s experiences, a lot of the material on relationship violence and disability centres on the experiences of women. Men, and people who don’t fall into the gender binary, also experience relationship violence.)

The women in this study identified abuse as the most significant health risk they faced.

We can’t ignore that!

Many policy changes in the United States are calling for healthcare providers to screen for abuse. The implications of this need to be considered carefully when it comes to disabled people. Their abuser may be with them during an appointment to facilitate care or communication, and it may be assumed that this person has to be there. It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

These are yes/no questions, though, and most people can find a way to indicate yes or no. It’s appropriate for a healthcare provider to spend time alone with all patients. Healthcare providers need to take an active role in meeting patients’ communication needs themselves, such as by making sure whatever technology the patient uses is there with them, learning how to use that technology, or providing a sign language interpreter. (Tip: If a partner says it would just be simpler for them to speak for the patient than for the patient to communicate directly with the healthcare provider, red flags should pop up like they’re on helium. They may put it in terms of making things easier for the doctor. I’d hate to think any doctor (or other healthcare provider) would privilege their own ease over communicating with the patient, but I’ve heard of too many times when a medical office has refused to do the work of getting interpreters for patients who need them to believe that this couldn’t happen.)

Many of the health factors research has shown are prevalent in people who experience abuse may be chalked up to disability without a full evaluation being done, so healthcare providers need to check their biases and beliefs about disability and illness and give their patients comprehensive care. Sometimes, when healthcare providers are less familiar with a patient’s medical condition, they may mistakenly attribute small changes to that condition, or presume that these small changes will be less bothersome to someone with a disability. There’s also the assumption a lot of people make about disabled people’s relationships not being romantic or sexual in nature, coupled with assumptions about what abuse looks like, that could colour healthcare providers’ evaluations of whether their disabled patients could be at risk of relationship abuse.

Being abused can both cause disabilities—physical as well as psychological—and exacerbate existing impairments. Experiencing abuse can impact how people manage their impairments or medical conditions—withholding access to healthcare is a form of abuse. The physical and emotional toll of abuse can lead to stress-related illnesses, compounding abuse victims’ disabilities with additional disabilities and illnesses. (as someone with multiple disabilities, I can personally vouch for the ways that multiple impairments make it harder to mitigate being disabled in this world.)

Another key factor that came up in this study was low sexual self-esteem. When we’re constantly bombarded with airbrushed photos of models, and magazine articles telling us the 101 best ways to please our guy in bed (not everyone has—or wants– a guy, and sexual pleasure can’t be distilled into surefire tips the way, say, scrambling an egg can be.) Meeting these cultural expectations is impossible. For people with disabilities, who often cannot do sexual things the ways other people can, and the ways our culture says “real” sex can be done—and who’ve gotten repeated messages that their sexualities either don’t matter or don’t exist—having any sort of sense of sexual self-worth can be a challenge. The women in this study talked about not being physically able to meet the sexual expectations of their partners, or the expectations society has of how women should be an act sexually.

The participants in this study whose sexual self-worth was lowest were those with disabilities acquired in adulthood, changing their sense of self (sexually and otherwise) and, because of these cultural messages, making it hard to build a new, just as strong, sense of self.

Several of these women expressed that they dated men they would not have considered prior to their injuries, dated men who had criminal histories, or with whom they didn’t click, or whom they didn’t find attractive. This does not mean that they dated men who were more likely to be abusive; it says, I think, that they had perhaps turned off, or at least dimmed, their own warning signals.

Some people with disabilities may tolerate abuse in relationships out of fear that no one else will want them. Sending this message is common among abusive partners, and this form of abuse is even more insidious for people with disabilities because many have also gotten that message from friends and family. As I mentioned above, many people think that folks who get romantically involved with disabled people are a step away from sainthood, and they sometimes will undervalue the sexual, intimate, or equal partnership parts of the relationship.

Part of the structure of society’s attitudes towards the sexuality of people with disabilities is that, even if we do have sexual thoughts, we don’t and shouldn’t have the time to act on them because we’re just so darn busy being disabled. If low sexual self-esteem is a risk factor for abuse, then someone had damn well better make time for recognizing disabled people’s sexualities.

Some of the risk factors correlated with experiencing relationship violence are especially common among people with disabilities. Unemployment rates are high among people with disabilities (the study linked at the top of this post also made this connection). And, while the specific statistics vary, it’s generally understood that people with disabilities are abused, in both childhood and adulthood, at higher rates than people without disabilities.

We have a culture that makes all sorts of excuses for abusers, and all sorts of excuses for why it’s not more inclusive of people with disabilities. If we had true community accountability we wouldn’t tolerate abusive behaviour. We wouldn’t have, when a parent attempts to murder a disabled child, an outpouring of sympathy for that parent, instead of the child she harmed.We would have a culture that says: “We know life was hard for that parent, but it’s never okay to try to kill your child.” That culture would also say: “We need to do better by disabled children and those who care for them.” (Yes, I’ve been talking here about intimate partner violence, specifically, but family violence is similar in that it happens in the home, and within the family unit—both of which are considered—like romantic relationships– beyond reproach and closed to outsiders.)

We’d also have a system in place for people of all abilities, because right now, people with disabilities don’t have equal access to the system we have for intimate partner violence victims/survivors.

It’s not all doom and gloom, and WTH is wrong with this world, though. My little anti-violence activist heart skipped a beat when I discovered these twoorganizations work specifically with people with disabilities who’ve experienced relationship abuse or other forms of interpersonal violence.

On that hopeful note, I’ll close for now (though I have at least another page worth of notes about things I’d like people to know about this topic).

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 162014
 

Today is Spirit Day.

Talking about anti-bullying and anti-violence is generally more meaningful to me than turning everything purple. Plus, if I turned this post purple I’d probably break something!

So instead I bring you this 2009 post from brilliant and much-missed disability-rights activist Laura Hershey tells the truth about violence against people with disabilities.

Is there such a thing as a hate crime based on disability?

When President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act into law last month, much of the excitement centered around the inclusion of sexual orientation. I too am moved that federal protection has now been extended to LGBT folks attacked by those who cannot tolerate our different expressions and gender and/or sexuality.

Equally importantly, the bill also covers crimes targeting people with physical or mental disabilities. This aspect has received less attention, possibly because many people find the very concept of disability hate crime difficult to fathom. Who could hurt the handicapped? What kind of a dirty low-life would sink so low as to prey upon a helpless disabled person?

Ironically, these common questions reflect social biases which actually contribute to violence against people with disabilities. When we are lumped into a stereotype called “the handicapped,” and seen as easy targets, passive and vulnerable, then perpetrators are more likely to seek us out and to get away with their offenses. On the other hand, when we are active and respected in our communities, we can count on some natural protection: visibility, connectedness, and legal recourse.

Hate crimes targeting disabled people do occur.

Here’s the entire post.

Note: If you want to turn things purple, please do. I understand it’s a really expressive colour. Just please don’t substitute purpling your world for talking.

Oct 102014
 

Today is World Mental Health Day, and I’ve been reflecting on how disability discrimination affects mental health.

Yes, there’s stigma and discrimination against people with psychological illnesses or disabilities; there’s also stigma and discrimination against disability in general that, I believe, can exacerbate, or even cause, short-term mental health crises or chronic or episodic mental illnesses. IN other words, I think the discrimination people with physical, developmental, or other disabilities experience increases our risk of developing psychological disabilities.

I haven’t yet been able to find studies that looked specifically at the effects of discrimination against people with disabilities on mental health, but we do know that disability stigma result in people not seeking treatment, withdrawing from daily activities, and denying the symptoms of any type of illness. Discrimination against people with disabilities can lead to exclusion from educational, social, and employment opportunities. resulting sometimes in experiences of isolation. These situations are also a ripe breeding ground for warning signs of mental health difficulties being ignored, minimized, or unnoticed by the person experiencing those difficulties or by their family or friends.

Many people with disabilities experience multiple types of discrimination, including hate crimes, discrimination in a school setting, harassment in public spaces, just to name a few.

I was able to find studies correlating the experiences of racism and homophobia with experiences of mental health disturbances ranging from chronic stress, to anxiety, to psychosis. I know we can’t use these findings as evidence that people with disabilities will have the same experiences as people of colour or LGBQ and trans folks, but they do set up a convincing—to me, anyway—picture of the impacts discrimination and stigma have on psychological well-being.

This overview of the psychological impact of discrimination against LGBQ and trans people cites research finding that LGBQ and trans folks who live in American states with laws that protect their human rights have a lower incidence of psychiatric disorders than do LGBQ and trans people in states that don’t yet have these laws on the books. The article pulls together a lot of the current data on discrimination and mental health for LGBQ and trans people, and is worth a read.

These
articles highlight the strong associations found between the experience of racism and the incidence of mental illness.

Because there is so much judgment of people with mental illness—so many assumptions that people with mental illness just “need to try harder,” are attention-seeking, or are crazy and can’t be trusted because of the illness—I think it’s important to say that none of what I, or the articles I’ve linked to, have said means that people who have not experienced large amounts of discrimination have no reason to experience mental health problems. Illness, of any kind, doesn’t discriminate.

Keeping this brief, for once, I’ll close with a link to an excellent blog post encouraging us to have less judgment toward, and more curiosity about mental illness.

Oct 092014
 

Saturday is National Coming Out Day 2014, and I’m thinking about people with disabilities who are queer, gender nonconforming, or both.

Queer and trans* people around the United States will celebrate this weekend. Some will come out for the first time.

Maybe some people with disabilities will come out.

Maybe some will feel they have to stay silent, even as people around them celebrate.

People with disabilities are thought of as nonsexual. People with intellectual disabilities, especially, are thought of as not being able to understand sex, sexuality, or relationships. ((As if any of us get to say what anybody’s sexuality, or how they feel about another person, should look like!)

“They don’t know what they’re talking about.”

“Oh, isn’t that sweet.”

“They’re just repeating what they hear other people saying.”

These are the kinds of things said about people with intellectual disabilities, and the responses to talk of sexualities aren’t likely to be mmuch different. Someone with an intellectual disability saying that they want a girlfriend, for example, is likely to hear one of the responses above, or to be reminded that they have lotsof friends who are girls. If the person saying they want a girlfriend is also a girl (or woman if she’s an adult), they might be told that only boys get to have girlfriends.

So, for this year’s National Coming Out Day, I want to do my part to make sure people kno that folks with disabilities have gender identities and sexualities too. To that end, I’m sharing this deeply moving (to me, anyway) post from Dave Hingsburger. Yes, yes…I kno I shared a post of his for last week’s TBT. I’ll admit to being a bit of a fangirl. This post just spoke to me as one that needed to be shared this week. I promise to share something written by someone else next week.

Here, Dave is talking about giving support to a person with an intellectual disability who is sharing that he’s gay and in love.

I don’t do this often because I don’t have to – pretty much everyone knows. So it felt odd, pushing the closet door open and letting it bang shut after me again. This time, though, I came out strategically. I was just in conversation with a man with Down Syndrome who was talking with me, struggling with the fact that he was attracted to, and had kissed, another man. He thought he was in love. He was aching with pain, it was all wrong, he was dirty and sinful.

I couldn’t bear watching him. I couldn’t bear remembering the pain of feeling shamed for feeling loved.

I couldn’t bear watching him hurt.

So, I said, “You know I’m gay, right?”

Read the whole post here.

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.