The Erasure of Sexuality in the Health Care System

Aug 252016
 

When was the last time you felt comfortable asking about your sexual health, or mentioning your sexual relationship, at the doctor’s office?

Sexuality is always a potential part of healthcare – we don’t usually leave our feelings, our relationships, our reproductive choices or experiences, and all the other pieces that can be part of our sexualities at home when we go for a doctor’s appointment, or wind up in the hospital, or talk to a social worker, or spend the day at the lab getting poked with needles or having pictures taken of our innards. Unless they specifically provide sexual healthcare, most of these people and places don’t include our sexualities in our healthcare discussions or plans. This isn’t going to work longterm for most of us; Most people identify themselves as being sexual or having a sexuality, and most of us are going to need to see the doctor or have medical tests at some point in our lives.

Last month I wrote about all the fantastic stuff I learned at the session on sex, sexuality, and relationships for neurodiverse folks at the Guelph Sexuality Conference.

Today our topic is Health Care’s Erasure of Sexual Pleasure.

Natalie Rose and Sophie Delancey, the workshop presenters, focussed on the experience of people with chronic illness or disability, but they pointed out that people receiving routine or preventive healthcare are just as much a part of the system, and just as much in need of improved care around their sexualities. They were also quick to point out that criticizing the failure of healthcare to address sexuality isn’t an indictment of individual providers; it’s a criticism of the system that trains providers and sets policies.

This workshop was packed! They had to bring in more chairs. People want to learn this stuff.

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Natalie Roseand Sophie Delancey make a dynamic duo for presenting on sex and disability. Natalie was trained as an occupational therapist and has a spouse with physical disabilities; Sophie has worked in sexuality-related jobs since graduating from university and has recently become disabled. They’re also both super-vibrant and enthusiastic. They know their topic, and they love it.

One thing I really appreciated was that they both shared personal experiences and observations. Sophie’s role wasn’t just to be the disabled person telling her story and Natalie’s role wasn’t just as the rehab professional telling us about the research (or, in this case, the lack of research).

For example: At one point Sophie was telling a story about her time in the hospital after her strokes, about not being able to get the right words from her brain to her mouth to communicate that she felt crowded by having so many people around her while she was using a bedpan. Sophie pointed out that policies should address patient privacy, especially because many patients can’t speak, or can’t find the right words, or feel too stressed or intimidated to speak. She talked about how the rush-rush-rush of being cared for in a hospital or rehabilitation centre can feel invasive, and that it can feel dehumanizing, even with the best intentions, to not have the privacy around the most intimate parts of our lives (everything from using the toilet to sneaking a smooch with a partner) that most of us take for granted.

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Telling stories about our lives and experiences is crucial to developing empathy, to highlighting diverse experiences, to making sure people know they’re not alone. But if we don’t center that in something bigger – and that something doesn’t have to be a footnoted, bibliography’d academic paper – we’ll all be sitting their telling our stories without gaining insight, building tools, or developing the power to make transformative change. The people we really want to reach – the policy makers, healthcare providers, social service workers, support workers – are going to walk away and go back to doing their jobs if we continue to simply tell stories without making targetted, applicable recommendations for change.

I’d like to just dismantle the system, but we usually can’t do that, so we need to give folks the tools to make their systems better – to do their jobs better. Like I said, the room was packed during this workshop, and I’d like to think that healthcare providers left with approaches to make their practices more inclusive of sexuality, more accepting of disability, even if they can’t directly impact the policies that se patients and clients as little more than the specific health problem or life crisis they come in with.

Making sex okay to talk about.

Our medical system is based on facts, biological happenings that can be observed and explained. For example: Unless healthcare providers find a reason for a patient’s pain, that pain is often dismissed or belittled. Patients’ Reports of pain often aren’t included, or described in detail, on medical charts. if a physical reason for the pain isn’t found, it’s assume to not exist, an the impact of the experience of pain on personal identity, relationships, daily activities isn’t explored or addressed.

Biologically provable facts are just a part of how most of us experience sexuality. Healthcare providers who want facts don’t know what to do with identities, experiences, feelings – and they’re not trained to know what to do with any of that. They’ll look for research on sex, and, mostly, find statistics on birth control methods, sexually transmitted infection risk, and sexual abuse prevention. These are absolutely important, but, noep, not the whole picture by a longshot. Another part of the picture? Most Medical students aren’t getting the training they know they need to be able to address patients’ sexual concerns.

When people don’t get this training, when there isn’t solid research, people tend to substitute their own opinions, especially around things as loaded as sexuality is for most of us. Or, they just avoid the topic as much as they can.

It’s hard for patients to get their needs met in a fast-paced, overworked, undervalued healthcare system as it is. If that need has anything to do with sexuality, most people are going to feel super-inhibited. Sophie’s biosays she had worked in the adult industry for five years before her strokes. With all that experience talking about sex, she still felt intimidated at the idea of mentioning her concerns about her sexual function to her healthcare providers. She didn’t want to alienate people who were addressing all the other needs she had after a sudden and life-threatening medical crisis. She didn’t know the parameters for what was okay to talk about. If no one mentioned sex and sexuality, she sure wasn’t going to rock the boat by mentioning it herself.

When providers don’t ask about sex and sexuality, the message is sent that it’s not an important part of health and healthcare.

patients don’t know if they’re allowed to talk about sex;
providers are often the people in power, even if they don’t see themselves that way, and it’s ultimately going to be up to them to open the conversation.

Not that that’s necessarily going to mean (or that we want it to mean) your primary care doctor saying: “So, how about that sex life.”

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Some providers don’t like to bring up sex and sexuality first because they think doing so would conflict with their client-centered approach – therapy or treatment is client-directed, so if clients don’t bring up sex (or any other topic), the provider doesn’t ask.

Culturally, we have really strong taboos against mentioning sexual things in nonromantic settings – and even in romantic settings lots of people have trouble expressing themselves around sexuality, but that’s a story for another day – and many people have experienced doctors or other providers shutting down questions about sexual fears or problems. We’re at a point where healthcare providers are going to have to step up and be key players in changing the conversation.

Some of the ways Sophie and Natalie suggested showing that sex and sexuality are acceptable topics:

  • ON intake forms, include questions about sexuality, including whether the patient has any sexual concerns they’d like to discuss. If you think about it, we’re asked about all kinds of socially uncomfortable topics on forms and at appointments – poop, food choices, weight, menstrual cycles, you name it. We’re always allowed to not answer if the question makes us feel too vulnerable.
  • In intake and discharge processes: Include resources for sex and sexuality information, especially information related to disability or illness, in any packets of material provided to the patient. I need to add here that this packet should always be provided in a format the patient can read (This doesn’t usually happen; printed paper is the default. At the very least, someone from the medical ofice or facility needs to go through the packet with the patient so that they know exactly what’s in there.
  • When making a treatment plan. Occupational and physiotherapists, especially, work with patients to decide on the goals and direction for the treatment plan. They can include sexual or romantic activities in the examples they give to help their clients develop that list of goals. And no, I’m not suggesting that the therapy should involve sexual activity. There are plenty of non-sexual ways to meet physical goals for sexual and romantic activities. For example: Natalie mentioned that getting into and out of, and figuring out supports for the reclining bound angle yoga pose as a great nonsexual way to experiment with sexual intercourse positions where the person receiving would be lying on their back.
  • At the office, hospital, or rehabilitation (or log-term care) facility: Make this a sexually inclusive environment. Include sexual healthcare and relationship health pamphlets or posters available in the waiting area, and in exam and consultation rooms.
  • And, I really liked this one for providers: Wear a button saying something like “You can talk to me about sex.” As a silent reminder that sex and sexuality are accepted in that space. I should add: If the client or patient can’t read, or can’t see, they should be told about this, in the same sort of calm, “Oh by the way” tone you’d use to tell someone there’s bottled water available if they’d like some.
  • To all providers: If you don’t have sex an sexuality training, you can still talk to your patients about it. You can listen (that’s therapeutic in itself) and know who to refer them to.

There’s so much fear that goes into being sick, especially if it’s a sudden helth crisis, that, in my book, anything that will help patients feel better, feel more in control of their lives, have more pleasure, is a good thing.

Natalie told us about one woman she heard about, who, one year after her stroke went to her doctor for a follow-up, and asked when she was allowed to have sex again. He was, apparently, surprised, and told her she could have had sex any time that previous year. There that woman was, afraid that the sex she wanted would hurt her, and too afraid or shy to ask sooner.

Not that lack of sex ever injured or killed anyone, but all pleasure is precious, and no one should have to worry needlessly like that.

“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.

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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.

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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

Relationship Violence Awareness: People With Disabilities

Jul 232015
 

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?

Even though people with disabilities are statistically more likely to experience relationship violence than nondisabled people there’s virtually nothing about what disabled people experience included in anti-domestic violence education, fundraising and awareness campaigns, or other forms of activism. (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 whose mental illness sometimes affects how they experience the world around them, 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 lack of research and activism with these groups means services can be rare or unhelpful.
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 the patient always needs their caregiver with them.

It’s impossible for any victim to truthfully answer the kinds of questions suggested here, if an abuser is in the room.

Most people can communicate in some way, and most people can find a way to respond to these questions, which just ask for a yes or no answer – response options could include head gestures, hand gestures, eye blinks, words on a communication board or an electronic communication application (such as on a smart phone or tablet), sign language, or talking.

It’s appropriate, and necessary, for a healthcare provider to conduct at least part of a patient’s appointment with no family members or other caregivers in the room, unless the adult patient makes it known that they want someone to stay. 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 romantic or intimate partner (or anyone, really, other than the patient) 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, so be less likely to investigate their cause. 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 the study I mentioned above 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 broken down 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 and should 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 regardless of anyone’s abilities, 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.

Very few organizations work specifically with disabled people who have experienced abuse. These two are exceptions.

We need fewer exceptions. We need agencies to stop working on a scarcity model that makes being inclusive of and accessible to disabled people seem like too much work – like something they just can’t do with the limited financial and human resources they have. We need online and offline awareness campaigns to include the voices and experiences of people with disabilities, not as unique additions to the anti-abuse message, but as full and equal participants in sharing stories and support, and finding solutions.