Feb 292016

The last day of February is Rare Disease Day.

Today I’m thinking about what I’ve learned from chronically ill friends and acquaintances, about the ways most chroniclly ill people’s lives continue, through all the treatments, all the doctor appointments, the sometimes daily medical tests, the waiting, the occasional or constant threat to life or current level of wellness. I’m thinking about the ways relationships and sexuality get shoved to the side when we talk about young people and adults with chronic illnesses, and about how that doesn’t always reflect people’s desires or lived experiences.

Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

Going through treatments and surgeries might make you think you’re less attractive, or make you feel totally crappy about yourself, but those experiences don’t make your sexuality disappear. Feeling like an object because no one can figure out how to help you feel better, and because the most touch you get in a day is from medical instruments and hands that see you as an object of curiosity, not a subject of love, might make you feel less human, less sexual, but that’s you relating to your sexuality too – and you feeling less desirable doesn’t mmean you’re any less desired.

Having an illness – or two, or three, or six – doesn’t make you nonsexual. It doesn’t make you asexual either, unless that’s where your personal sexual identity lies.

To get all clinical about it, Sex remains an important contributor to quality of life in many patients with chronic illness and their partners.

Not surprising, but it also looks like healthcare providers aren’t talking about sexuality much. Why not? This researcher thinks one of the problems might be that:

Patients feel that if sexual health were important, their healthcare provider would raise the topic during the visit. At the same time, the healthcare provider feels that if it were important to the patient, the patient would bring it up. So, either side is waiting for the other to talk about it first and ultimately, nobody brings it up.

Sexual health isn’t just whether you have an STI, or a yeast infection, or are worried about fertility – though those things are just as important, and usually more important to talk about when you’re ill; sexual health is about your whole sexual self, and changes in desire, sexual arousal, or how your body physically responds to sex, how your illness affects your current relationship or dating prospects, has just as much to do with your health as anything else.

You might have to do sex and intimate relationships diferently. Having sex with yourself or a partner might get shoved lower on the priority list. You might want to do sex differently because you need it to do different things for you. Maybe you hold onto a sense of vibrancy and aliveness by diving headlong into the world of online dating, or maybe you make sure you wear something every day that makes you feel attractive. Maybe you use sex as a way to care for your partner, because they’re caring for you in so many other areas of your life.

Maybe you make sure you and your beloved are still connecting by scheduling dates at the hospital coffee shop an promising each other that, for one hour, you will not talk blood cell counts, bills from the insurance company, or which doctors have the bedside manner of a slug.

You might have to learn how to do sex diferently, but it’ll also help to know that Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate. Sexuality is part of that daily life you might really be craving more of as you cope with illness.

I, I don’t talk about it {sexuality} much, but I do feel that it’s important to talk about it on here because people need to know that it’s okay, and I had a recent experience that was just perfect demonstration of this, and that is that you can be lying in a hospital bed with tubes all over you, and your partner can walk in and see your brainwaves on the screen and be like, let’s conduct an experiment! And right there in front of the camera while they’re watching you for seizures, he can just grab you — in the hospital bed and be like, you are still totally hot to me.It was. It was pretty badass. It was, it was one of those moments where you just kind of, you don’t think of yourself as sexy. You think of yourself, we societally condition ourselves to believe that when you are in a hospital or when you are facing a chronic disability or illness that you’re not sexy.

— Sassy Outwater

That’s an excerpt from an awesome podcast on everything from seizure disorders, to Scottish music, to sex and disability, as lived experience and in romance novels. I think it speaks to the relationships between illness and sexuality better than any research or theory ever could.

Living with illness or disability isn’t one-dimensionally just about that illness or disability, and I think this Podcast shows that really well, with Sassy talking about music (AKA her work), books (things she loves, and also her work, and disability, with and without the sexy parts. There’s even a full transcript for people who can’t or don’t want to listen.

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Feb 162016

There’s something we’re not talking about.

There’s something the news articles and personal essays, the films and poetry, the sexy photo spreads and opinion pieces about sex and disability are leaving out – safer sex and sexual health.

To be fair, most mainstream discussions of sex and sexuality aren’t talking about sexual health either, at least not in ways that encourage people to take care of theirs.

Safer sex has a rep for being boring and unsexy. Getting regular sexual healthcare is billed as embarrassing, and, what’s more, unnecessary unless we’re a certain kind of person, or doing a certain kind of sexual activity, or have had X number of partners.

Newsflash: Getting sexual healthcare, and practicing safer sex, saves lives and protects health, which isn’t boring. At least, I don’t think so.

Maybe we folks with disabilities haven’t been talking about safer sex because we’ve been busy convincing people of the obvious, that disability isn’t unsexy and that many disabled people do have, or want, sex. Maybe folks haven’t been talking about how they protect their sexual health because they’ve bought into the myth that stopping to put on a condom or dental dam (whether in real life or on the page) ruins the mood Maybe folks haven’t been talking about safer sex because they know talking about sexual health makes us all feel a little scared and vulnerable, and we know that disability makes nondisabled people feel scared and vulnerable.

I’m not sure why we’re not educating and telling stories about sexual health, but we need to start, for our own well-being if for nothing else.

People with disabilities who are or want to be sexual with others need access to sexual healthcare, access that sometimes just isn’t there. We also need to make information about safer sex practices part of the collective wisdom of disabled people. Just like disabled folks turn to each other to share strategies on getting our employment, travel, or technology-based access needs met, folks need to be able to draw on that collective wisdom for information on things like how to put a condom on when you can only use one hand, or how to get help filling out forms at a clinic without telling your sexual history to the whole world, or how to get a pelvic exam when your legs keep going into spasm – information you won’t find in any sexual health guide I know of.

Sexual health is a big deal. Remember that thing about saving lives and supporting health? Yes, that one. And that goes for supporting health whatever our baseline health status happens to be.

Preventing or treating STIs (sexually transmitted infections) is important for everyone, and important for public health as a whole, but I think it’s fair to say that STI prevention can be especially important for chronically ill or disabled folks whose baseline health and functioning can be compromised by something as basic as the common cold, or for someone who relies on others for assistance with personal care and health maintenance.

People, no matter what their disability status, are often so scared of STIs that they just ignore safer sex, or only practice it sometimes, or only for certain activities.

But there’s no shame in supporting our own health, and there’s no shame in being ill, either.

As my friend and colleague Ducky DooLittle says: “Good, nice, clean, sweet people get STIs every single day.”

If you want a quick run-down on safer sex in general, I suggest:

To start the conversation on safer sex and disability, I’m sharing this article I wrote for SaferSex.Education.

Disabled People need sexual healthcare too

Most safer sex guides take it for granted that all of us are going to have the manual dexterity (ability to move our hands) to unwrap and use a condom, that getting STI testing is as easy as booking (and keeping) an appointment at a free or low-cost sexual health clinic, and that communicating with a partner about safer sex is as easy as having a few face-to-face conversations about it. For those of us who have any sort of physical, cognitive, or psychological disability, these and other “basic” safer sex strategies may not be so easy.

It doesn’t help that disabled people are assumed to be nonsexual, or to have more important things to worry about than the “luxury” of sexual feelings or a sexual relationship, or any number of other myths about sex and disability all of which miss the mark in one way or another.

People with disabilities who are sexually active, or planning to be sexually active, need to practice safer sex, and get regular sexual healthcare, just like anyone else.

A Quick Overview of Safer Sex

If you’re disabled, know that you have the right to whatever expression of your sexuality you want to have, and you have the right to be safe when expressing your sexual self, both alone and with partners.

Safer sex is about taking care of your sexual health, and protecting yourself from sexually transmitted infections (STIs). Preventing unwanted pregnancy is known as birth control, not safer sex, but it’s still part of your sexual healthcare if pregnancy is something that can happen to you or someone you’re sexually involved with.

Safer sex includes using barriers (such as condoms or dental dams) for genital contact with a partner, and getting regular sexual healthcare, including STI testing.

Sexual Health Care

Most sexual health services aren’t set up to meet the needs of disabled people. In the U.S., many providers don’t get training in working with patients who have disabilities. Coupled with assumptions about disability and sex, this can lead to you not getting the sexual healthcare you need. That might be a healthcare provider who doesn’t ask you about sex, or asks in such a way that assumes you’re not having it.

Or, it means examination tables that don’t accommodate people whose bodies don’t move in the ways expected for traditional exams. This includes staff unable, unwilling, or untrained to assist with positioning your body on the table.

Or, it means reams of forms to fill out, and informational pamphlets and brochures that are only available in print.

Even one step into a building- or doorways that are too narrow- can keep you from seeing a healthcare provider of your choosing.

read the rest of this article for some disability-aware tips on getting your sexual healthcare needs met.

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.