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 302014
 

I just can’t wrap my brain around rape jokes being funny or appropriate.

This came across my virtual desk yesterday, and I am—I guess baffled is the best word for it. Quick version, there was a joke in the Simpsons/Family Guy crossover episode, which aired on Sunday, that poked fun at the idea of someone being raped. I’m baffled by how “Your sister’s being raped.” Is supposed to be the punchline of a joke. (I’m presuming this joke aired as planned, but I don’t know.) No matter how many times I read through the sequence, I still don’t get it, and I don’t think that’s just because I don’t particularly want to get it. I’m baffled by how an anti-sexual assault organization would see this “joke” as a tteachable moment.

I’m just plain confused.

How could an organization devoted to educating about and preventing sexual assault think this joke has educational potential? It just doesn’t. It’s nonsensical. Plus, in a comedy context it’s likely to go over people’s heads. Hell, I read it out of that context—you kno, the context where you laugh at everything and punch your buddy in the shoulder when it’s especially funny—and it went over my head. So yes, people might laugh at it, because they’re already laughing at everything else. They’re certainly not going to think about what their take-away from this scene should be. Most people don’t analyze their cartoons as they watch them.

One thing I’m wondering is if the idea that the “positioning” of the punchline being a pointer to why rape just isn’t funny is based on the idea that asking for lee Keybum (leaky Bum) isn’t all that funny. Thing is: Bart Simpson calling the bar and asking for nonsense names has been a gag on The Simmpsons since its early days. I personally find it amusing—not rip-roaring funny as I’m sure I did when I was a child—but certainly amusing. Maybe if someone doesn’t find that amusing, they might think that ending the scene with a rape comment makes it clear how ridiculous the hole sequence is. If indeed that was anyone’s logic, I’m not buying it!

Whether rape belongs in comedy is hardly a new debate. I knew I’d seen a particular feminist response the last time this issue came to my attention, and raced across the Internet (all the while feeling guilty for using the term “funny rape jokes” in a search engine) to find

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.

Aug 112014
 

Update: George Takei has issued this classy, down-to-earth, articulate apology. I’m impressed by how he explains his actions without making excuses for himself (a delicate balancing act when you’re under word-fire from critics and fans), and by how responsive he is to learning and growing as a human being.

My favourite part:

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community.his “funny” play miracle, reimagining of Hellen Keller and Anne Sullivan’s story. As I said then, I’ve never seen this play, so can’t comment on its humour or lack thereof, but I maintain it’s not Savage’s place to use the history of a minority group he doesn’t belong to as a springboard for his dramatic efforts. Even if the presentation is funny (it’s theatre after all, and some might argue that the rules are different) the written injunction to the audience not to tell deafblind people about the play, because it’s offensive, really can’t count as a joke. That’s like hurting someone then saying “I was just joking!” in response to their pain. Oh, and if you actually say something will be offensive to this, that, or the other group, isn’t that a blatant admission of wrong-doing?

Elsa at Feminist Sonar sheds some more light on the “humour” in this play, which apparently includes a “hilarious” torture scene. Read down through Elsa’s post to see where she talks about Miracle; first she explains how torture of disabled people isn’t just a figment of Dan Savage’s (or anyone else’s) imagination. If you want to learn more about that, this article” has more detail.

So, now that we’ve recapped a little history…

Last weekend, George Takei joined the ranks of disability ignorance smoothed over with so-called humour. Granted, he didn’t invent this humour himself, but the fact that he shared the meme, and particularly the way he responded to people’s concerns about it, shows how little he knows about disability, disabled people, disability rights, and how little he appears willing to learn.

Michelle at Mommy Misadventures explains what happened, and why it was so troubling, in this open letter.

To be clear, I’m not furious with Takei. (I was seeing stars about Miracle for a long time, and that truly is a miracle as I can see nothing, not even light.) I’m more frustrated by his carelessness here (and, admittedly, unimpressed by his blase attitude), and by a still prevailing attitude that equality and decency around disability is something separate from equality and decency around anything else. Perhaps it’s too much to expect that someone who advocates for fair treatment of other minorities will at least be responsive when people point out stupidity, cruelty, or inaccuracy of a joke about a minority, even if he personally finds the joke funny? Perhaps it’s too much to expect that he’d understand the danger of perpetuating stereotypes?

Maybe it’s because I don’t drink much alcohol, but I don’t actually find this meme particularly funny. Or, maybe I don’t find it funny because, to me, a disabled person shopping—for anything–is just a normal part of life. Not only does this meme make the assumption that anyone who stands up from a wheelchair really can’t be as disabled as all that, but it also, I think, makes it a big deal that a person in a wheelchair would be shopping for alcohol at all.

As others have pointed out, by itself, a person standing up from their wheelchair could mean all sorts of things. Maybe standing up was painful or fatiguing for the person in the picture, but worth it to her. Maybe she stood to reach her beverage of choice because she could, easily and without pain or discomfort, but walking is painful, or even dangerous, for her. Maybe she did so because she didn’t need help, or maybe she did it because she didn’t want to ask for help and invite people’s attention towards her. Maybe she thought about asking someone to get her chosen drink for her, but then worried that someone might decide to judge her choices or lecture her about drinking alcohol or about the way she spends her money.

Disabled people, we worry about things like that because they happen to us on a regular basis. All you need to do is read the #AbledPrivilegeIs hashtag on Twitter to see the small and big invasions that can happen, sometimes multiple times a day—invasions that are frequently invisible to people who don’t experience them or don’t know to look for them.

Disability is hardly serious all the time. Sometimes it’s downright silly—to those of us who live it. We who are hard of hearing mishear things, sometimes with embarrassing and humiliating results, but sometimes in hilarious ways that turn into ongoing inside jokes between the hard-of-hearing person and their loved ones. People who can’t see (particularly before the advent of talking bar code scanners) sometimes open the wrong can or package of food with amusing results—sweetened condensed milk instead of chicken noodle soup, anyone?*
There are even disabled comedians, being funny, and talking about disability as only disabled people really can.

So, yes, disability is silly, but someone in a wheelchair who is able to stand to select the drink she wants to enjoy later isn’t silly; that’s just her normal. Shopping is normal for everyone.

Now, picture of a child who crawled into a fruit bin? That could be funny.

I think people don’t want us to ruin their jokes by explaining why they’re not actually jokes at all,

Jokes in real life are about things that are real and that are so ridiculous we couldn’t make them up if we tried. This joke instead makes something ridiculous out of a real event that really doesn’t mean anything at all except maybe (and maybe not) for the person in the picture.

When people tell you there’s a problem, I think it’s smart to listen.

A little bit of acknowledgement would have been nice.
Discrimination gets perpetuated by people continuing to say that something isn’t a big deal, or, even worse, that whatever’s happening is the right way.

This isn’t about fans not liking the joke. It’s about people saying: “There’s something wrong here.

Sure, no one likes having their activities and choices scrutinized, but that’s nothing new for celebrities, particularly those, like takei, who cultivate their public presence. Part of cultivating a public presence is being able to acknowledge when you were wrong, or when you made a mistake. “I didn’t know” is the oldest excuse in the book, but if it’s then followed by “…but I will learn,” there may be hope for humanity yet.

What I’m finding really frustrating about this trend, first with savage, now with Takei, is that we have two public figures, who’ve both been vocal about nondiscrimination and anti-bullying, who seem to not be getting that their public behaviors around disability are reflecting ignorance, and an unwillingness to learn. People look to these folks to find out what’s okay or not, both because people look up to celebrities (and, to be real, expect more of them than of the average person) and because these particular celebrities have, in diferent ways, made themselves authorities in advocacy and equality.

As far as I’m concerned, Takei and Savage can do anything they like in their personal lives (though I’d prefer that they not hurt people or animals, or pollute waterways) but people look to them as models for how to treat people, how to treat minority people, like people. This life, both that of the public celebrity, and that of the vocal anti-discrimination advocate, is one that both men have chosen and that comes with a social responsibility.

Whether we’re talking about It gets better or It’s okay to say Takei!, both Savage and Takei have been vocal about anti-discrimination and the harmful effects of discrimination. Do disabled people just not count? Judging from what I’ve read, perhaps not.

Andrew Morrison Gurza has made it clear that there’s an absence of disability-awareness in the gay community. Come on, dudes! Backing away from a guy in a wheelchair? If there’s that much fear and distaste, it’s hardly surprising that the advocates among you are ignoring and belittling disability.

Discrimination doesn’t exist in a vacuum, yet that’s how anti-discrimination efforts seem to be working. Disabled people, and some able-bodied folks who work with or love us, advocate for disability rights. Gay people, and some straight allies, advocate for gay rights… Substitute your minority group of choice.

Why can’t we move to a philosophical space where we all want to learn about each other’s struggles, and where they intersect with our own and where they differ?

I maintain that we will never truly meet any equality goals until we do this.

* Most blind people have a system for organizing food that we can’t readily identify by touch or smell, but like any system, there is a failure rate.

Aug 072014
 

In the past couple of weeks, two different people have asked me about the words cisgender, cisman, ciswoman, or just cis for short. These are new words for a lot of people, and I think those of us who use them have skipped a step in helping folks understand why we use them, and why they’re important parts of our ever-changing vocabulary. (For curmudgeons who say that we’ve got all kinds of new words coming out, and they can’t keep track, may I remind you that languages evolve over time, and even different groups of people who speak the same language use diferent words, or the same words that mean radically diferent things depending on the context or where the person saying them is from.) Regarding cisgender, there are, in general, the people who use the term on a regular basis, and people who have no idea what the hell it means.

Cis is a Latin prefix, meaning “of the same side.” It’s been brought into everyday language to expand the way we talk about gender.

A cisgender person, or a cisman or ciswoman, is someone who feels themselves to be, and lives as, the same gender they were identified as having at birth. So, a ciswoman would have been identified as a girl at birth, raised as a girl, thought of herself as a girl, and thinks of herself as a woman, or lady, or whatever is her preference, in adulthood.

We’ve been using the Latin prefix trans, meaning through, across, other, and so on, for a while, to talk about people who are transgender, or a person who is a transman, or a transwoman, et cetera, et cetera.

A transgender person is someone whose experience of their own gender, their gender identity, doesn’t line up with the gender they were assigned when they were born.

Complex? In many ways, yes, in many ways no. . This business of there being two clearly defined genders, and that whichever gender you are, that gender remains static your whole life, feels more unnatural to me the more I learn.

Kate Bornstein In her pivotal book Gender
Outlaw: On Men, Women and the Rest of Us
points out that babies are given a gender identity via a quick glance at their genitals to determine their sex. I don’t know about you, but that seems awfully simple for an identity that’s with us our whole lives. Other identities we’re given come and go as we grow, change, and establish (then sometimes reinvent) our place in the world. People don’t insist that our occupation remain the same, that our fashion sense never change, that our bodies and how we deal with them remain static our whole lives. There’s even—most of the time—minimal resistance to people changing their names (the most common examples of this are people ditching a diminutive like Sammy or Becky, or taking their partner’s name after marriage). Why shouldn’t gender identity be more flexible.

I’m getting ahead of myself though.

Having the words cisgender, cisman, ciswoman, in our collective vocabulary is important, even if we don’t always use those terms. Folks who are cisgender aren’t any more normal or regular (and really not that much more common) than people who are transgender. (Yes, the stats might tell us that there are many more cispeople than trans folks, but consider that people aren’t generally asked what their gender identity is; the numbers of people who don’t conform to the gender binary, who aren’t cis (on the same side of are likely much higher than any of us would expect.)

So, the cispeople (I belong to this group) aren’t the norm, and they need a name—hence, cis.

It was once explained to me that there’s no such thing as something being cold—bear with me, please–there are just things that have heat and things that don’t. I have no idea whether this is a common way of understanding temperature, but what I do know is that, at least in English, we have words for hot, cold, and everything in between. We don’t simply say hot, and not-hot. Or, we don’t simply say cold when we mean something not hot, and nothing when we mean something hot.

I was asked if it was offensive to not call oneself a ciswoman, and simply refer to oneself as a girl or woman. Not at all! Cis (and trans for that matter) is a category that helps make things clearer in many contexts, though for some, certainly, it can be an identity. When talking about gender, it can be useful for people to know what your personal experience with gender has been, but none of us should ever have to share things we’re not comfortable sharing, or use words to describe ourselves we’re not comfortable using. That goes for transpeople (though too often their autonomy is not respected) so it needs to go for cispeople too. There is no obligation to identify one’s gender identity to anyone unless they need to know things about your body, or you want to be sure they address you by the pronouns you’re most likely to respond to.

I was also asked if cis is an insult. Cisgender is not an insult. Certainly, some people use it that way. Some people will always use any identity—any word, really–as an insult. Quite often when people talk about cisgender though, they’re talking about a specific group of people, and the biases or beliefs members of that group hold, or the experiences they have or haven’t had. When someone says “ciswomen do…” or “ a lot of cismen say…” they’re generally not insulting, but reporting.

What we want to do our best to avoid, no matter what our gender identity, is doing things like talking about “men, women, and trans” (transmen and transwomen are just as much men and women as those of us who are cisgender) or “transpeople and the rest of us.” It may not be intentional, but having a special word for one group, and not one for another, is belittling and makes an assumption about normalcy that just isn’t accurate. I think it’s automatic for many of us to slot other people into categories, but neglect to categorize ourselves. Talking with a couple of friends about this, I used the example of blindness, a characteristic those friends and I share. I pointed out that we don’t talk about “people” and “blind people,” but rather “sighted people” and “blind people.” One friend correctly pointed out that it’s likely that many people who can see, who are part of the “regular” group, would indeed be likely to just refer to themselves as “people.”

Many people would use the word labels here, but I think there’s too much baggage around that term, too many assumptions that the labels are just words that don’t mean much.

Naming something, giving words to it, describes that thing, it tells you where that thing (person, object, place, etc) exists in space, time, culture, and in relation to other things.

We also don’t generally just grab words out of the ether for no good reason. Cis and trans, as I said, come from Latin, as much of the English language does. They’ve also been in common usage among scientists, not even brought back to life from some dusty thesaurus; they’ve been here all along.

I could say a lot more about language, and about gender, but as someone who hasn’t done much contemplation of her own gender until lately, and hasn’t been put in a position where her gender has been called into question, I’m not actually the most qualified to talk about this. I turn you over to several writers who explain cisgender much better than I can.

One thing before I do that: For any of you using a screen reader, cis is pronounced sis, as in the first syllable of sister. Sometimes I catch myself starting to talk about c.i.s. (saying each letter) women. Occupational hazard!