Because I Won’t Shut Up About the Importance of Sexual Healthcare

Feb 202018
 

Sexual healthcare is vital for anyone and everyone who’s sexually active, but, between inadequate research, inaccesible buildings and equipment, inexperienced and insensitive healthcare providers, and a whole bunch of other factors, most people with disabilities aren’t getting their sexual healthcare needs met. Before I read this article from the Disability Visibility Project, I knew that logically. It’s my job to know it.

Still, after reading, I’m left without words at the level of trauma and incompetence the writer’s doctors subjected her to. She wound up having major surgery that she might not have needed had she had the same level of access to preventive gynecological care that most nondisabled folks do. I’ll let you read the rest of her story yourself. I salute this woman’s bravery! She’s been through way too much!

And, she’s not the only one. Folks of all genders face these kinds of barriers to healthcare everyday. Biases against LGBQ or transgender folks, or racist attitudes or behaviours, or stigmas against folks who are homeless or unemployed – it all happens within the healthcare system (as well as everywhere else), and can mean the difference between getting quality or lackluster care, or even getting care at all.

Every day, people with disabilities aren’t getting the healthcare they need because the healthcare system isn’t set up to serve everyone’s physical needs, and providers aren’t being trained to recognize their own unconscious biases against disability so they can treat disabled patients with proficiency, and respect.

Ad our culture’s shame around anything sex-related, and prevailing beliefs that disabled people aren’t (or shouldn’t be) sexual, into the mix, and we have a sexual and reproductive healthcare system that is basically broken for people with disabilities.

We need to change this, to ensure that researchers and clinicians know about currently available resources, to inspire researchers to investigate best gynecological practices for all bodies, to make sure healthcare providers have training and experience before they leave school, again with all minds and bodies.

Direct Support Meets LGBTQ+ Folks With Disabilities

Jun 272017
 

Graphic of a hand making a thumbs-up gesture.A week ago I snuck into the National Alliance for Direct Support Professionals Webinar on supporting people with intellectual disability who are lesbian, gay, bi, trans, queer, or something else under the label of LGBTQ+. It felt like sneaking because I don’t work with folks with intellectual or developmental disability, directly or otherwise, but, actually, I signed up like everyone else. I’d heard about the Webinar on Dave Hingsburger‘s blog and I wanted to hear what he and the other panelists had to say.

I didn’t want to take a spot from someone who needed to be there for their work, so I signed up five minutes before the talk was scheduled to start, figuring that would make everything fair! :-)

Why did I go if I’m not a direct support professional? Promoting healthy sexuality for everyone is what I do. These conversations we’re having online are just the tiniest, tiniest part of what’s happening with disabled people’s sexualities in the world. If I can be a voice, no matter how small, to bring some of that into the light, I will.

I’m not going to go through all the facts and statistics they covered in this talk. They’re all in this article (this is a PDF file) from the International Journal For Direct Support Professionals.

Don’t be put off by the word journal. This one’s easy to read – not full of scholarly words and long rambly sentences. Basically, it looks like this journal is written for busy people who need the facts as quickly as possible!

But, there were a few interesting tidbits from the Webinar I’d like to share.

***

It shouldn’t still need saying, but people with developmental disabilities are entitled to the same rights as all people; including (from the journal article linked above):

  • Sexuality and sexual expression
  • Dignity and respect
  • Privacy, confidentiality and freedom of association
  • Access sexual education reflective of their cultural, religious and moral values

That people with intellectual disabilities haven’t been respected in these ways has lead to tremendous harm. Dave told the story of a client who had grown up in an institution, but was living in the community when Dave met him. The client was deeply depressed, though most of his care team decided he was just unmotivated. Dave and other supportive staff eventually learned that this man had had a long-term relationship with another man with intellectual disability when he lived in the institution. This man was grieving the loss of his lover. Once understanding staff members new what was going on, the lovers were reunited.

That story had a happy ending, but it just as well could not have – and the ending might not have been any happier if the couple in question was heterosexual.

The denial that people with intellectual and developmental disabilities even have a sexuality runs so deep that just asserting their desire and right to date someone can be like them “coming out” – no matter what their sexual orientation is. For a person with an intellectual disability, just announcing that they have a crush, or are in love, or have sexual feelings and desires is met with disbelief, ridicule, rejection, punishment – no matter the gender of their crush object or lover.

***

This panel worked on answering: How do people with intellectual disabilities know it’s safe to talk about their sexual orientation and sex and sexuality in general?

A few quotes that jumped out at me related to how folks work with their clients:

“If you haven’t made yourself a clear ally, you’re not an ally.”

“People in your care need to feel safe from you.”

“It’s my job to earn their trust not their job to give me their trust.”

“When you push someone to have a conversation, that just becomes another kind of abusive act.”

Allow people (applies just as well to friends or family as to clients) to come forward when they feel most comfortable.

Show acceptance and willingness to listen by being nonjudgmental in other areas of their lives.

For example: Avoid judgmental comments on their preferences, such as that they shouldn’t put jam on their peanut butter and toast because it has too many calories. (Support professionals are their to support adults with intellectual disabilities with living their lives to the fullest. That means not micromanaging or taking autonomy away – making sure these adults have choices, and access to whichever choice they choose. )

People will not trust you with the bigger stuff if you’re always harping at them about the smaller things.

Direct support professionals were encouraged to figure out who will be the carrier of sexuality information at their agency. Talking about sex and sexuality is something most people are pretty bad at, and giving the right information to clients with intellectual disabilities means being able to talk comfortably about sex and comunicate details in ways clients will understand and remember.

I really appreciated how honest and down-to-earth the speakers were – acknowledging that sexuality is messy to talk about in general,. We’re dealing with all sorts of social taboos, as well as the wrong-headed thinking that has governed the way the sexuality of people with intellectual disabilities has been “managed” for centuries. That’s not something anyone can reverse overnight, or through a journal article and an hour long panel discussion. I also appreciated that they acknowledged that many agencies serving adults with intellectual disabilities still have restrictive policies around acknowledging sexuality, and that staff at those agencies probably weren’t being given access to educational seminars like this one.

Postscript

As I was putting this post together, I came across this piece published in Slate last week. Really impressed with how the writer and editor chose to put this together, with the voices of folks with intellectual disability front and center.

Postscript the Second

The overall theme of this Webinar and the accompanying journal article was pride, and the article has one of the best, most direct, answer to the question: “Why isn’t there a straight pride day?” I’ve ever seen:

Because heterosexuality has never been outlawed, punished, or considered a mental illness and being heterosexual has never been cause for a child to be thrown out of a family, or for someone to lose their job or their home.

We’re All Normal, And Other Sexy Scientific Facts

Sep 132016
 

A graphic of a projection screen with a pie chart.

Projection Screen With Pie Chart

We’re all normal.

let me repeat that, we’re all normal.

Our bodies are normal.

Our relationships are normal.

Our sexual desires are normal.

Our sex lives are normal.

Note: This only applies if you don’t use sex as a weapon. If you do,stop…just stop.

*

Emily Nagoski is the Wellness Education Director at Smith College. During her keynote at this year’s Guelph Sexuality Conference, she shared one of her most life-changing moments teaching college students about sexuality. When she asked her students, on the end-of-year exam, so, you know, they had to answer – what one thing they learned from the course, the answers were, overwhelmingly, some flavour of “I learned that I’m normal.”

When we (and I mean we of any age, not just young people) talk to our friends, or read sexy novels, or watch movies, we see and hear conversations about sex that often just don’t resonate. We get the message, from those books and movies, that there’s one kind of sexy, and we’re not it. We worry, when we talk to friends, or see their bodies, if our desires aren’t like theirs, or our bodies don’t look like theirs. This reminds me of when I went to Cara Liebowitz’s workshop on asexuality at the Breaking silences conference and she shared how strange and isolating it felt to hear college friends talk about feeling horny, to hear the trope that all young people want sex, and to not know, on a gut level, what horny even felt like.

Another example: Most of us aren’t too interested in sex when we’re stressed, right?

Right – but most isn’t all. Apparently, studies have shown that 80% to 90% of participants reported trouble getting aroused when they were stressed out. That leaves 10%-20% of participants who got more revved up sexually when the stress piled on. Neither way is “right,” it just is – though I’m guessing it makes for lots of misunderstandings in relationships.

*

Emily wants to help people understand their own sexualities, and figure out what kind of sex (if any) they want by looking at what the science has to say.

If you’re a sex nerd like me – or, just a nerd – this is super exciting. I was on the edge of my seat, frantically taking notes, the whole time Emily was talking.

That said: Relying on the science does have limitations. As Emily pointed out, science still classifies people as either male or female, depending mostly on what they have between their legs. Yeah, there are other ways to measure that, but most of us haven’t had our chromosomes tested. And, even if we did, maleness and femaleness aren’t so clear-cut as all that. Sex and gender are way, way more complicated.

What Emily didn’t mention in her lecture was that there are other unknowns when we’re looking to science to tell us just what the heck’s going on with our sexualities and sex lives.

We’re limited by who gets researched: Is it mostly college students? Mostly nondisabled folks? Mostly people from one cultural background or another? Mostly people who are evaluated as being in “good health?”

How we experience life affects how our sexualities develop. it affects how we relate to our bodies, to other people, to the world around us. Our personal histories can affect how our bodies react, and how we react to our bodies

My biggest take-away from all the scientific research is that the results give us new ways of looking at the world, new ways of thinking about sexuality, and new ways of -possibly – understanding our own bodies.

*

The research also clears up, once and for all, a misconception that’s been around far too long!

When you’re having sex with someone, listen to what they’re telling you, not whether they’re hard, or wet, or panting, or flushed, or….

The way someone’s body reacts, doesn’t tell you whether they want to be having this sex. It’s called arousal nonconcordance and while the studies show that it happens more to participants who were categorized as women – in other words, people with vulvas and vaginas – this can happen with any person, at any time, for any reason. Yes, even people in long-term relationships can have their bodies act like they want sex, when they couldn’t be less into it. Wanting sex one day doesn’t mean wanting it the next, even if all the physical arousal signs are there.

It doesn’t help that wanting sex is usually talked about in terms of how fast someone got wet, or the fact that their penis was hard. I don’t know about you, but most novels I read take us from casual flirting to full-on arousal (and, implied, full on interest) in less than thirty seconds.

Emily read us a passage from Fifty Shades of Grey (first time i’d read any of it, and I doubt I’ll be reding more). Christian is spanking Ana, and remarks on how much he “knows” she likes it because he sees her wetness. Meanwhile, Ana’s thoughts are all about how much she doesn’t like it, and wondering why she’s doing this, and justifying to herself why this is okay.

Nope, Ana is not aroused, or having fun!

The worst part of judging whether someone wants sex by what their body is doing, rather than on what they’re telling you is when that person’s “no” or “slow down” or “I don’t want this” isn’t listened to. A friend told me recently about a mutual acquaintance who was trying to make out with her. He stopped when she asked him to, but he couldn’t resist observing that her nipple had gotten hard, as if that was some kind of hard evidence (no pun intended – really!) that she enjoyed the contact even if she said she didn’t want it.

Then there are the people who don’t stop. It’s way too common (and makes my stomach turn! – No, scratch that: Fills me with rage!) that sexual abusers will insist that their victims must have liked it, because they got wet, or had an orgasm, or moved their hips, or whatever lie seems to fit best and work to manipulate or discredit the “I didn’t ask for or agree to that.” Little do they know: Science is not on their side.

If the mind is saying no, we listen to that, however someone communicates that to us. period.

Here’s a Youtube video on arousal nonconcordance (fully captioned).

*

The second most pivotal thing I learnd was this:
Scientifically, sex is not a drive; we don’t need sex to survive, the way we need food, or water, or sleep, or enough sodium (salt).

No one ever died or got injured for lack of sex.

So, what we call a “sex drive,” that feeling that makes us want to get our sexy on? That’s actually called a sexual incentive motivation system. That doesn’t roll off the tongue so well, but there you have it. It’s totally fine if we want to keep calling it a drive, as long as we understand the differences.

A drive is for something we need to have to survive – like I said above: water, sleep, food, certain minerals from food.

An incentive motivation system is an external thing, external attraction, that pulls you into it and compels you to explore. Think of it like being intensely curious about something where you start reading everything you can on it, talking about it all the time, living it day in and day out, versus being dry-throated, fuzzy-mouthed “dying of thirst” thirsty.

According to Emily, when we say we have a high sex drive, we’re basically saying that we have a high curiosity for sex, a strong pull to explore sex or feel sexual sensations.

I have this in my notes, which I really love: Your partner, or a sexual act, is a source of wonder, exploration, curiosity – hot curiosity.

Takeaways:

  • We do not need sex to survive.
  • Sexual frustration will not kill you.

Sexual frustration will not kill you.

I repeat: sexual frustration, lack of sex, unsatisfying sex, not having a sexual partner – won’t kill you. It won’t even make you sick.

*

The title of this presentation was “Pleasure is the Measure.”

when we shed the things we think we’re supposed to do, or feel, or think, about sexuality, we’re left with what we want.

It doesn’t matter who you have sex with, or how, or why, or where (as long as you’re obeying local laws), or even if you’re having sex at all.

What matters is that it’s what you want to be doing.

It’s not just sexytimes and orgasms that make the plesure happen; it’s feeling safe, happy, secure, not doing things you don’t want to do, knowing what you do want to do.

Further Reading

Come As You Are

The dirty Normal

A sexually accurate romance novel “How Not To Fall”

“Corrective” Surgery On Intersex Children is Medical Violence

Jul 262015
 

These loving, affirming parents are suing the doctors who performed medically unnecessary surgery on their son before they met and adopted him. Their son was, like about one in two thousand children, born intersex. His doctors decided the baby should be a girl, and surgically altered his genitals to match this gender assignment.

“MC” is ten years old now, and has identified himself as a boy.

His parents trust him to know who he is.

They’re distressed that his body was surgically changed before he was old enough to say what he wanted, changed for no other reason than that it didn’t look like what people thought a girl’s, or a boy’s, body should look like. MC is confused and hurting now, and it didn’t have to be this way.

Every time I hear about the pain a child went through because someone with decision-making power decided their body wasn’t good enough, I want to find them all (the children, of course) and start a big cuddle pile. Then I remember they’ve been touched enough against their will, so I go cuddle a stuffed animal instead and share these stories as much and as far as I can.

***
Unnecessary surgery disables children. Surgery creates scarring. For intersex children, this often means chronic pain, loss of sensation, and even injury as their body grows, but is restricted by surgical scar tissue and muscle damage. These are all physical disabilities, usually with lasting symptoms, that wouldn’t have been there had the surgery not happened. Gender dysphoria, and the sense of bodily violation, can lead to emotional pain and mental health struggles like anxiety, depression, and thoughts of self-harm. Sometimes, the outcome is suicide, or chronic and disabling psychological struggles.

A word on unnecessary surgery in general: I’m not a medical practitioner, and most definitions of medical necessity out there revolve around what insurance will and won’t cover, so I’m defining medically necessary for my purposes, as any procedure needed to save a person’s life or significantly improve their functioning.

A child who’s urethra is blocked or otherwise doesn’t work to carry urine out of the body should have surgery if it will help. A child who’s urethra just doesn’t look the way other children’s urethras look, or is pointed in a way that won’t let the child stand up to pee like boys and men are “supposed” to, should not have surgery unless or until they’re old enough to decide what they want.

No one should decide that purely cosmetic surgery should be performed on someone else’s body.

Surgery is stressful. Surgery is traumatic.

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

The tendency to bully around difference is a massive topic that can, and has filled books. People will always find difference, even if it’s not staring them in the face.

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

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

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

** Someone did have that kind of expansive imagination.

Further Reading

As Nature Made Him: The Boy Who Was Raised as a Girl