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.

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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.

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.”

*

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.

Sexual Expression Is a Meaningful Activity, Too

Jul 062015
 

I wrote the following post in March 2014, after attending Mara Levy‘s talk, Problem-Solving Sex with Disability at the Catalyst Conference.

Mara Levy 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 there’s this belief out there that people with disabilities have more important things to worry about than being sexual, and that sex just isn’t relevant once someone becomes disabled. (Not true!) it doesn’t help 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 after illness or injury.

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:

  • listen
  • rid themselves of paternalistic attitudes (thinking of disabled people as childlike or helpless)
  • 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

And, Mara added, nondisabled people need to do this processing and awareness building 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.