Feb 252018
 

Everybody’s getting in on the “let’s publish sex and disability articles” deal these days.

Query Google (or your favourite search engine) for “sex and disability,” and your top results will almost always be from major online and print publications, and will date from the last four or five years. I’m not complaining about this. It’s fantastic that sexuality and disability, separately and together, are getting so much air time.

But like all good things, we didn’t create this conversation from scratch. Today’s voices aren’t the sexuality and disability pioneers the clickbait headlines want us to think they are. Years, decades really, of confabs in living rooms, at conferences, and later on online bulletin boards and chatrooms got us to this point.

Some of these conversations are lost in people’s memories. Some are hiding in obscure, or out-of-print books. And then there’s the Internet, the decades-old Internet with all it’s treasures. Remember, people were getting online in the early 90s, and I’d argue, with no evidence whatsoever, that disabled folks were some of the first to realize how powerful online spaces would be.

So, yes, the Internet, full of treasure – sometimes buried, sometimes obvious, sometimes forever lost to the ubiquitous “404. Page not found” message, which usually shows up when there’s a particularly enticing title and meta-description.

I’ve been digging these online and offline gems out for a while now, and it’s time for me to stop hoarding and start sharing. (though come to think of it, treasure-seeking pirates are usually portrayed as disabled…one eye? artificial leg? Yup, disabled.) So, maybe hoarding is just what we treasure-seekers do.

First stop: FWD (feminists with disabilities) for a way forward

FWD/Forward published essays, interviews, and opinion pieces on feminist and disability topics, “in response to the lack of disability content in online feminist spaces.” They were live from 2009-2011, and closed due to lack of community support. It takes more than passion and commitment to keep a Web site running.

Fortunately for us, some generous soul has archived everything and is keeping the site live…for which I’m incredibly grateful. I was pretty active online when FWD/Forward was happening – and I had no idea they existed. There really aren’t words for how sad this makes me. I could have learned a lot about writing and advocacy from these folks. This was important work being done, and valuable people to know.

I can, and do, get lost in this site for hours. I’ll probably share more favourite pieces over the coming months, but, first, this excellent introduction to disability and sexuality.
Disability and Sexuality 101, or, Do disabled people have sex?

The reason PWD aren’t considered as sexual – particularly “visibly” disabled PWD – is that the idea of “the perfect body” as the only sexual body dominates popular discourse. Additionally, we have the stereotypes of PWD as pathetic or stoic, far removed from the sexual. Not to mention the fact that disabled people tend to be shoved away from the general public. This idea is not due to some inherent aspect of disability that negates sexuality, it’s just bigotry. The lack of recognition for PWDs’ sexuality has meant, less so in recent years, that a lot of PWD aren’t given appropriate sex education. Without proper sex ed, it’s harder to take charge of one’s own sexual life and body. This lack of information has its role in enabling the high rates of abuse against PWD. There is a lot of horrific policing of the bodies and sexuality of disabled women in particular, as you’ll read about on this blog in less 101-type discussions.

And this…this is one case where you do want to read the comments. There’s so much good, honest, thoughtful dialogue here. At the risk of sounding like an old fuddy-duddy, there’s a strong feeling of connection I just don’t get from so many online conversations today.

If you have a sex and disability resource you’d like to see get more attention – a favourite article, book, academic paper, or what have you, hit the contact form at the bottom of this page and send it my way, please. Remember, I’m looking for older, or more obscure material – let’s say anything more than five years old.

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.

*

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.

*

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.

Apr 202016
 

“It just feels like one more thing my illness is taking away from me.”

A friend who has several chronic illnesses had just finished telling me how she has to change her sexual practices for a while. She has a primary sexual and romantic partner, and several “friends with benefits” she has sex with occasionally. The casual sex, she told me, has to be put on hold for a while. Her doctors have put her on immune system suppressing medicine that makes any risk of contracting a sexually transmitted infection, even one as usually nonthreatening as herpes, dangerous for her. The doctors were adamant: Safer sex wasn’t going to be safe enough, unless she could guarantee that her partners were STiI-free, something none of us can know unless they’ve had two sets of STI tests come back negative and we can guarantee that everyone in the sexual relationship has been monogamous for all kinds of sex. Not so easy to do with casual partners.

As I listened to my friend, I wondered if her doctors could hear the desolation in her voice too.

Maybe you think giving up a friends-with-benefits arrangement isn’t as big a deal as, oh, having to quit your job for health reasons, or learning that there aren’t any more treatments to try, or…and you’d be right, mostly, for some people, some of the time.

Our sexualities are a big, big part of who we are, whether we’re asexual, polyamorous, or anywhere else on sexuality spectrums, and, for folks who are chronically ill, maintaining as much of who you are becomes a lifeline, one of the things that helps you feel human when you can’t rely on your body to do the same thing from one day to the next.

There are plenty of reasons for therapists, doctors, and other healthcare providers to make asking about sex and sexuality a more regular part of their practice with clients or patients. Sexuality, for most of us, connects with most aspects of our physical, mental, and, for some, spiritual health.

Knowing that we can share as much as we’re comfortable sharing of our feelings about and experiences of sex, as well as our broader interaction with our sexualities (including our past intimate relationships, desires around reproduction and parenting, histories of abuse, and more) with a healthcare provider who will use the information to help, not judge us can save folks a lot of worry and heartache, not to mention help protect physical health and get support around experiences of sexual assault or violent relationships. One of the biggest struggles people have around their sexuality,or how they express themselves sexually, is feeling sure they’re alone in their experiences or desires)

Giving permission for, or actively opening up the conversation about sex and sexuality is something doctors, therapists, and other healthcare providers need to be doing a lot more, with all their patients and clients, but especially with those who have disabilities or chronic illnesses.

This is true when the disability or illness afects a person’s day-to-day health (such as an autoimmune disorder) or when it has little to no impact on a person’s general health (such as blindness).

Most people’s sex and sexuality concerns, feelings, desires, or experiences will cover the same or similar ground, regardless of disability or illness.

There’s no “disabled sexuality” that comes along with having an illness or disability.

Disabled folks are kinky, asexual, willingly or unwillingly celibate, happily or unhappily married, polyamorous,
single, or any other sexual or relationship status you can think of.

But, there are a few things I think healthcare providers should know related to the experience of disability or chronic illness.

Here they are, in no particular order:

We need you to believe in our intimate relationships, because so many people don’t.

partners of disabled people frequently hear things like:

  • “You’re brave for dating her.”
  • “I guess you have most of the responsibility in your relationship?”
  • “It must be so hard taking care of him all the time. Who do you have to take care of you?”

Consider what Anna shares about her experiences being married to someone with physical disabilities:

Mostly, though, people who have seen Don and I together, who have watched us be cuddly, hold hands, and just be a couple together in public will often be shocked – shocked I tell you! – to find out that I’m not his caretaker or his sister, but that we’re married and have (whispers) sex. With each other. …
at least one ex thinks that Don can’t possibly be satisfying me so I should have sex with him instead.

For disabled people, the messages are often similar, though sometimes more subtle: We shouldn’t try to have romantic relationships, anyone who’s interested in us isn’t going to hang around for the long haul, that we have more important things to worry about than being in a relationship, or that they’ll be lucky to find anyone who can take care of them. All this is exacerbated by a prevailing attitude that disabled people are childlike, that impairment and disability make a person helples to make the right choices for themselves and protect their own safety (or make sound decisions about when we feel okay about taking risks).

When family or friends aren’t actively discouraging a disabled person from entering a romantic relationship, they’re weighing in on whether disabled people should only date other disabled people, or should seek out only nondisabled potential partners. Disabled people are often the most vocal, and most judgmental, on this question. There’s no consensus in these debates, except for how completely they ignore the obvious – that impairment status doesn’t tell anyone how they’ll connect to someone as a person, and that love, care, and connection are what most people look for in an intimate relationship. Some disabled folks might choose to date only disabled, or nondisabled, people, but that’s a deeply personal choice, not one, in my opinion,to be debated around the dinner table, or anywhere else.

Other people’s opinions can and do put a lot of pressure on a disabled person looking to start a relationship who doesn’t get support for that from their family. It can also put stress on a couple, if they feel as if no one respects the bond they have as intimate partners. When a visibly disabled and visibly nondisabled partner go out together, they’re rarely read as lovers or spouses. The visibly nondisabled partner might feel resentful about being mistaken, by servers in restaurants, or, yes, staff in doctor’s offices or hospitals, for their partner’s nurse, payed caregiver, or family member.

Developing a disability or chronic illness as an adult means changes, changes to body, changes to mind, changes to relationship, changes to sexual feelings, experiences, to the ways a person does sex.

Acquiring a disability or illness can impact relationships. patients and clients need their healthcare providers to talk about that, or at least raise the subject. Many people don’t know how to talk about sex and sexuality at the best of times, and with the stress of illness or disability onset, people may need support with knowing how to talk to a partner about the changes in their relationship balance and sex life,, or even with knowing how to grapple with their own feelings. Acquiring an illness or disability also often means that things like medicines, or physical therapy, or long-term disability benefits take priority, and patients can really benefit from their healthcare provider letting them know that the health of their sexuality and their intimate relationship (if they’re in one) are also important.

Sarah Smith Rainey’s book, Love, Sex, and Disability: The Pleasures of Care, is an excellent resource if you want to learn more about the role disability plays in relationships.

We need you to know that we’re just as likely to be interested in parenting,and to be good parents, as nondisabled people.

Disabled people are told, in big and little ways, that we can’t be parents. It’s a social habit (and a nosey habit) here in the U.S. to ask adults when they’re going to have children; the culture is one of active encouragement towards parenthood. Disabled people are often left out of this cultural habit, are assumed to not be parents, or are actively discouraged from parenting. I’ve heard that the disbelief sometimes goes so far as people asking a visibly disabled person whether the baby they’re holding is theirs.

All this takes an emotional tole, but also a legal one. Custody disputes are often settled with a simple mention of disability, with custody given to the nondisabled parent without investigating whether being with the disabled parent would actually be the best option for the child. Sometimes, it doesn’t even get that far, and babies are removed from their disabled parents at or shortly after birth.

Consider the case of these parents, who both have cerebral palsy or these parents, both of whom are blind. In both cases, the parents were considered incompetent because they couldn’t physically do parenting tasks the same ways nondisabled parents do them. These parents were essentially treated like children themselves, without any seeming awareness that living, as they do, in a world literally not built for them, they have more than likely developed a lot of resilience and creativity. This isn’t about disabled people being superhuman; it’s about what skills people develop to survive.

There’s a shocking, but not surprising, lack of knowledge about how disabled parents can and do care for children – using adapted baby care equipment, for example – often resulting in child welfare workers removing the child, forcing the parents to prove their abilities to parent. Most new parents learn as they go, and requiring a higher standard of proof from disabled parents is unfair, and not necessarily in the best interests of the child.

There’s really no excuse for this ignorance. According to The most recent estimates, 4.1 million parents in the U.S. are disabled, and have a child under 18 living with them. In other words, disabled parents aren’t rare, and most of them have been able to parent their own children just fine.

Disabled people who want to parent need to know that they have a healthcare provider or therapist on their side, someone who can educate them about parenting in general if they need or want help, offer information about parenting as a person with a disability, and be prepared to advocate on their behalf if their parenting is interfered with for reasons of disability alone.

To learn more about how disabled parents care for children, visit Through the Looking Glass and Disability, Pregnancy, and Parenthood.

To read findings (and recommendations) on the current state of parental rights for people with disabilities, check out Rocking the Cradle, a report from the National Council on Disability.

We need you to know that many of us have,or will, experience abuse, sometimes in healthcare settings.

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?

This is the reality for many disable people experiencing intimate partner violence or other forms of abuse.

are disabled people at greater risk of abuse than nondisabled people? The research we have on this is mixed, but results from the Disability and abuse Project and Baylor College of Medicine both show that disabled people who do experience abuse are likely to have experienced multiple incidents. Baylor’s research showed tha disabled women experienced abuse for longer periods of time, and from a greater number of abusers than did nondisabled women, even though the actual percentage of disabled and nondisabled women who reported physical or sexual abuse was the same. The Disability and Abuse Project found that more than 90% of the disabled people who reported having experienced abuse reported experiencing abuse multiple times.

The numbers are hard to pin down, but the concensus is that abuse is present in many disabled people’s lives. Participants in this study identified abuse as the most significant health risk they faced. All of this is compounded by physical and social barriers in the way of disabled people in abusive situations asking for and receiving help.

It’s not just disabled adults at risk of abuse.

Many children with disabilities are at higher risk of abuse because they come into contact with more adults who can claim the right to take them into private spaces without being asked questions. The authors of The Ultimate Guide to Sex and Disability suggest that disabled children’s exposure to a greater number of people than nondisabled children are usually exposed to – medical specialists, nurses, physical, occupational, and speech therapists, educational assistants and support workers – accounts for the higher incidence of physical and sexual abuse they, as a group, typically experience.

This resonates with my own observations. I can personally count on the fingers of one hand, without thinking too hard about it, friends and acquaintances who were abused by people who were supposed to be teaching or caring for them in a disability setting. It’s as heartbreaking as it sounds.

None of this is meant to minimize the abuse nondisabled children and adults experience, or to imply that all disabled people have a history of abuse.

But, therapists and healthcare providers do need to pay attention. You might be a disabled person’s first, and only, line of defense to cope with or get out of an abusive situation. Your patients and clients may also have deep and complicated histories of abuse. Please, don’t be afraid to ask.

We need you to know what travelling through the world with a disability is like, and to make sure we don’t have that experience while we’re in your office.

But, this isn’t about sexuality, you’re probably saying.

If your disabled clients are going to trust you enough to talk about sex and sexuality, we need to feel safe in your office. It means helping you understand the disability-related stresses we might b (scratch that: that we’ll probably be) carrying into our appointment with you, whether we’re seeing you for a routine physical, or for grief counselling, or to get forms fille out that will make our lives as disabled people easier.

The points below just scratch the surface of disabled people’s experiences in our world. I’m putting them here as a mini road map, not a technical manual.

Disabled advocate Dave Hingsburger writes about the social exhaustion many disable people feel after a day out in public. And in this post he’s just observing routine disability-related conversations. These don’t include the highly emotionally charge discussions with strangers who walk up to us, out of the blue, and ask to pray with us, or being stuck next to someone on the bus who wants to tell us all about all the disabled people they’ve known, or responding to people’s anger because we don’t fit their definition of a disabled person (for example: a wheelchair user who stands up to take something off a high shelf, or a blind person carrying a cane who reads a print sign). They don’t include the condescension, or the gushing claims of how much they admire us.

They don’t include the random, uninvited pats on the head or shoulder, or back, or hand from strangers.

They don’t include having one’s arm, or mobility aid, grabbed without permission by someone who “just wants to help” but instead scares us half to death, or throws off our already unsteady balance, or disorients us by dragging us across a street we never intended to cross.

For visibly disabled people, the interactions with strangers can be constant, and tedious, especially so for the congratulations or praise for doing everyday activities

  • To be spoken to directly, even if we’re with a visibly able person, even if that person is, in fact, speaking for us.
  • To be asked what kind of help we need; to not be touched until we say so.
  • To be spoken to in a respectful tone of voice, addressed by our name, not with terms of endearment. To not be treated like children. (For that matter, most of us could stand to treat children more respectfully anyway.
  • If you want to know how we do any sort of every-day task,such as bathing or dressing,I suggest:

    • Ask Yourself: Do I need to know this for treatment purposes, or to satisfy my curiosity. If the former, say so when you ask the question. If the latter, Google is your friend.
    • If you do want to ask to satisfy your curiosity, write yourself a note and ask at the end of the appointment. This way, the patient or client spends appointment time talking about what they need to talk about, not explaining how they put their socks on in the morning.
    • If you do decide to ask about the socks, or anything else, think about how you ask. Here’s an example: I’m blind. When I first met my primary care physician, she asked me what the best way would be for her to send my test results. She did not automatically asume, as others would, and have, that someone would read the results to me. This went a long way towards helping me trust her.

     Resources  Comments Off on Four Things Healthcare Providers Need to Know About Sexuality and Disability
    Feb 052016
     

    Of the five sex toy stores I’ve personally visited over the past 15 years, only one had a flat entrance.

    Of those five, only three had employees who didn’t respond to me as a visibly disabled person with obvious anxiety, and, in one case, hostility.

    Sex toys – It’s one of the first things people think about when they think sex and disability – if, of course, they’ve managed to get past the “OMG disabled people? Sex? I think I have the vapours!”

    For people who follow online media, anyway, the idea of people with disabbilities being sexual creatures is getting more familiar, and sex toys tend to feature in those narratives.

    For example:

    There’s a great reason for this. Toys can make sex play more physically pleasurable for people who have spinal cord injuries or other reasons for genital nerve damage. Or, they can help a person who has chronic pain, or limited mobility (or both) reach their butt. Or, they can help partners do the sexual thinggs they desire but that their bodies won’t allow. Or…the list has no end.

    How do folks with disabilities get their hands on sex toys in the first place? Generally, the way anyone else does: stores, online, or cobbling something together from the kitchen drawer or bathroom cabinet. ON the surface, it’s easy-peasy. Another But, a lot of stores still aren’t physically accessible to folks with mobility impairments, with steps at the entrance or inside, no automatic doors, narrow aisles, and more. Some stores don’t keep sample versions of each product on the shelf for people to handle. At the stores where they do have all sample products out for customers, you can literally glance at, or hold, or sniff dozens of dildos (or anything else you’re looking at) to get an up-close-and-personal sense for which one is most likely to work for you.

    As with anything, you’ll really need to try the thing before you know for sure if you’ll like it, and you’re not allowed to do that until you pay up!

    Having this large display of products right there can improve everyone’s shopping experience, but it’s virtually vital for folks who can’t see to get a sense of the depth and breadth (no puns intended here) of what’s out there. It’s also pretty crucial for folks who need to be able to tell if their hands, let alone any other body parts, can use the toys.

    Shopping at sex toy stores is unlike most other shopping experiences.

    It’s fun. It’s sexy. It can be scary as hell or as normal as going to the drugstore to buy toothpaste. A trip to a sex toy store, for some, is the ultimate “OMG that changed my life” experience,; for others it can be a “Bletch! never again!” story their best friends tease them about forever.

    But shopping for anything can be a big deal for people with disabilities – whether it’s being able to get to the store (or use the store’s Web site without cursing technology and punching the computer), or physically accessing all aisles and shelves, or receiving customer service that’s respectful and helpful, receiving customer service at all (I.E. not being passed over in favour of the person in line behind you), or even being able, with a significantly lower likelihood of being employed and having disposable income, to afford what’s being offered.

    The rest of this post will look at how beliefs about and attitudes towards disability can make or break a shopping experience, and why that’s even more of a big deal when we’re talking sex toy shopping.

    My own first sex toy shopping experience went something like this:

    Me: “I’m looking for a G-spot vibrator.”

    Shop Owner: Opens clear plastic box and places toy in my hands. “here’s one. It’s only $34.99. Here’s the button to turn it on. How are you going to be able to put the batteries in?”

    Me: Touching the slender hard-plastic cyllinder with a curved end that looked better for fishing (minus the sharp edges) than for rubbing delicate tissue: “Does this actually feel good?” (What I wanted to say: It feels too hard.)

    Store-Owner: “Here, let me show you how to put the batteries in. You unscrew this part–”

    Me: “I’m not sure it’ll feel…?” (Silently: “Yes, I think I can figure out how to put the batteries in. Not really worried about that right now.”)

    Store-owner: “Oh. You just have to experiment and find what feels good for your body.”

    Me:”Umm, sure. I’ll guess I’ll try it… That’s all you have for G-spotting?”

    store-Owner: “This one will be the easiest for you to put the batteries in.”

    Me: “Okay, I guess I’ll try it.”

    A minute later I’d payed my money and left, plastic bag full of toy in hand.

    Was this just one of those store-owners who wasn’t interested in spending time with customers?

    No. When we weren’t talking about batteries, she mentioned that she’d just spent an hour helping a guy pick out a toy for his wife. I’m guessing the guy didn’t have a physical disability. He sure didn’t use a wheelchair; that was one of the stores with steps.

    My experience hardly counts as discrimination, but there’s a reason it’s stuck with me.

    I walked into that store expecting to be treated like a customer, shown options, given space and time and information to make my decision. I wouldn’t particularly have minded being shown how the battery compartment worked, but in a more “oh, by the way” manner as part of giving me information about the toy. The store-owner expected that I was a blind person. Whatever a blind person meant to her, it wasn’t someone who comes to buy toys.

    My needs as a sex toy customer weren’t any different from any other customer’s needs. The store-owner needed me to not be different from any of the other people she expected to walk into her store and buy stuff so she could pay her bills.

    My needs were to have a sex toy shop employee or owner stay calm and professional at a time when, no matter how enlightened I was about sex toys, I needed their help and was feeling nervous, anxious, and like I wasn’t quite supposed to be doing what I was doing or spending my money on “frivolous” things. The store-owner’s needs were – well – to deal with this anxiety-producing situation of being faced with a blind customer as quickly as possible.

    I’ve learned from friends and acquaintances who’ve run or worked in sex toy stores that how to support customers is a big part of their work. They want customers to feel welcome, but not crowded, supported, but not intruded on, cared for, but not too much.

    They know that people who come into their store could be having any number of sexual insecurities, relationship problems, body image issues, and more. They know that sometimes their potential customers come in looking for answers without even knowing what the questions are.

    Your standard retail experience, where you usually expect that a salesperson will greet you, cheerily ask if you need help, and check in with you every 4 minutes, might feel downright terrifying to some folks trying to buy a sex toy, or porn, or a bondage kit, or a bottle of lube. Most of us have been taught to feel such shame around sex in general, and especially our own sexualities, that too much input or friendly chit-chat could feel really invasive or scary. (Note: This doesn’t apply to everyone. For some people, that kind of friendly connection puts them at ease, but they need to be the ones who initiate it.)

    but, for a blind person, who may or will need help – depending on how much usable vision they have, E.G. Can they read lube bottles, see the pictures on DvD covers, or see where the rainbow-coloured dildos are kept? – how does a sex toy salesperson maintain as much physical or emotional distance as the customer wants while still giving practical help finding items and reading packaging? Or, what if a person in a wheelchair wants to look at a dildo they can’t reach? Asking a sales associate to reach it and hand it to them isn’t necessarily an invitation to talk.

    I think what makes customers with disabilities’ experiences in sex toy shops unique is that many sex toy store customers, regardless of ability, bring their own nervousness, fear, anger, or whatever to their shopping experience. Let’s face it — sex and sexuality carry huge emotions attached to them. Most of us have internalized shame around sex and sexuality in one way or another.

    Going into a toy shop, especially in a small town, especially if you look different or distinctive, can carry a whole lot of emotions and fearful thoughts with it.

    So, the average toy shop customer could be walking through the store with any one of these emotions, or all of them and more all at once! They’re counting on people working their not to judge them.

    Disabled customers, in addition to potentially coming in with this emotional bagage, will also often be carrying around the anxiety of “How will I get treated by these strangers, today?” and for some “Will I even be able to get into the store?” That’s a lot of inner chatter and anxiety to be carrying around all the time.

    Based on what we know about general attitudes around and knowledge about disability, it’s pretty reasonable to say that When a visibly disabled customer enters a store, some people working their are going to have big, complicated emotions of their own come up. People have huge fears and uncertainties around disability. Folks will often explain their awkward behaviours around visibly disabled people as “not knowing what to do,” or “not wanting to do the wrong thing.” Disability is, I think, still this really unfamiliar thing, at least when it comes to disabled people being out and about, earning and spending money, making sexual choices, window shopping, and just generally not being off in some special space. I’m still working out ways to help nondisabled folks, or folks with limited experiences around a variety of disabilities, understand some of the basics of giving assistance, without turning it into a list of “do”s and “don’t”s that ends up looking a lot like this guide.

    A lot of the negative and nervous responses to disability from nondisabled folks come from a place of “OMG, what if that (being disabled) was me” and also from a place of “This person isn’t anything like me; I can’t relate.” The fear most people have around disability is deep and it’s unlikely that that fear isn’t going to afect the interactions of people who feel it with visibly disabled folks.

    So, you’ve got a person looking for sex toys or sexually explicit materials, or condoms, or maybe they don’t even know what they’re looking for, and you’ve got a person feeling undone by the physical reminder of disability in front of them. Remember what I said above about hostility? Yes, that happened. No, it wasn’t fun, but that’s a story for another time.

    I think the reason that being greeted with hostility in a sex toy store surprised me so much was that, by and large, people who work in sexuality-related fields have been some of the warmest, most respectful, most creative and disability-aware people I’ve ever met. But these have alsso been the people who recognize that both disability and sexuality are mega-giant issues that can undo people’s sense of security. More happily, these are also the people who realize that sex and sexuality can be fun, creative, and playful, and is something everyone has, and can access, if they want.

    Oh, and in case you wanted to know: My instincts were spot-on (pun intended, maybe?) about that toy. It didn’t work for my body.

    And, the toy store with no steps? Come As You Are, though, sadly, they had to close their doors in 2016.

    Nov 172015
     

    Day 3 of the Breaking Silences Sex and Disability Conference at Wright State University.

    Deviant Sexuality and Disability: The Hypersexuality of Women with Bipolar Disorder

    Meghann O’Leary, M.A
    University of Illinois at Chicago
    Hailee Gibbons, M.S
    University of Illinois at Chicago
    HaileeGibbons.com

    Most of the academic and popular literature on sexuality and disability focuses on how disabled people are desexualized, or seen as nonsexual. Meghann and Hailee mentioned several writers and theories; one term that was new to me (though the idea is familiar) was Harlan Hahn’s concept of “asexual objectification.” This is the idea that disabled women, disabled people of any gender really, are seen as things that don’t have a sexuality – in the most extreme cases, as things that don’t have a humanity. IN a session I went to earlier in the week, asexuality was presented as a sexual orientation, a way someone relates to their own sexuality, so I use the terms desexualization or nonsexual instead. I’m hoping Meghann and Hailee will mention this shift to more inclusive sexuality terms in their literature review. Maybe Hahn’s term can be updated to “nonsexual objectification.” Updating the concept this way still contrasts pervasive attitudes towards disabled people with the ways North American cultures tend to sexually objectify people.

    (here’s more information on the theory of asexual objectification.

    These theories usually describe the experiences of people with visible physical disabilities.

    Women diagnosed with mental illness, especially bipolar disorder, are instead seen as hypersexual. “Hypersexuality” is one of the bipolar disorder symptoms listed in the DSM (Diagnostic and Statistical Manual), the diagnostic tool most often used by psychiatrists and other mental health practitioners in the United States. There’s no definition of “normal” sexuality to go along with this “symptom.” For that matter, there’s not really a definition of hypersexuality beyond evaluating behaviours like how many partners a patient or client has had, or how frequently they’re engaging in sexual behaviours.

    So, each mental health practitioner makes their own judgments about what is normal, and how or whether their patient or clients deviate from that. (And medical and mental health practitioners rarely get a lot of training in sexuality, let alone in how to manage their own professional biases and personal beliefs around it.)

    With no standard, sexual preferences, orientations, and sexual practices might be labelled as hypersexual, as deviant, in a way that medicalizes sexuality and sexual choice.

    I asked the presenters whether practitioners tend to evaluate things like whether the patient or client is using safer sex practices, showing judgment in the partners they choose (I.E. Not having sex with their coworkers, their children’s teachers, etc.), and how they feel about their sexual activities and choices. They didn’t know about any research around this, but as people diagnosed with bipolar disorder, they shared that they had never experienced or heard of clinicians’ doing this type of in depth evaluation, and that the evaluation focuses on numbers of partners and frequency of sex.

    The other part of this research is an examination of popular media. TV shows and films with female characters who are either specifically labelled as bipolar in the show, or who are understood to have mental illness and behave in ways folks with bipolar disorder are expected to behave, usually show these characters as out-of-control sexually. The narrative in one film mentioned in this session showed the character losing her job because she slept with all her coworkers; her struggle and eventual triumph in the movie was establishing a stable, heterosexual, monogamous relationship with the male lead.

    Most media depictions of women with bipolr disorder or other mental illness that involves erratic behaviours or emotions are white.

    Meghann and Hailee suggested that this is because women of colour are already hypersexualized – any sexual expression is seen as being out of control – especially in film and television depictions. Mental illness in white female TV and film characters is used as a creative tool to develop hypersexuality and tention. It also offers an element of cure or healing; the characters usually wind up not behaving so “inappropriately” by the end of the story, also reinforcing the idea that illness should always be fixed and that women should be sexual, but not too sexual and only sexual in accepted ways.

    I think this research is raising important questions and issues, such as whetehr a person’s sexual behaviours are intentionally chosen, or are driven by brain chemicals and reactions that make evaluating safety and personal preference feel dificult or unneceessary – whether sexual activities and choices are done and made with consideration of safety, or are erratic, either without consideration of danger or with delusions of invincibility (E.G. “No one will find out I’m having an affair.” “I won’t (or can’t) contract STIs.””

    Another important takeaway is that clinicians need to make sure they don’t use their own feelings about whether it’s okay to be sexual with more than one partner, to have group sex, to have sex with someone of the same gender, to engage in BDSM activities – to label a patient as deviant when they’re just acting out their wishes and desires.

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