Dealing with rude non-disabled

Article part of a serie published on www.scarleteen.com on July 28, 2017.

Many people with evident physical impairments — like those that require the use of mobility devices — encounter rude questions from nondisabled people on the regular. Those with chronic illnesses and other impairments that might not always be immediately obvious certainly come in for their share as well. Sometimes it feels like we should be selling tickets to the freak show.

Ridiculous and wildly inappropriate questions come from family, friends, complete strangers, and even medical professionals who should know better.

They may want to know: “What’s wrong with you?” “How did you get like that?” “Are you going to get better?” “How do you [ordinary daily task]?” But when it comes to sexuality, many nondisabled people are extremely curious — and rude.

Some seem to think asking for intimate details about your sex life is totally okay. They want to know mechanics and details like: “How do you have sex in a wheelchair?” “Can you…?” If you’re LGBQ, they ramp it up even more. The good old “but how do lesbians have sex?” question goes on steroids when one or both partners is disabled. It doesn’t seem to occur to them that they’re being pretty rude — how would they like it if we went around asking them intimate personal questions?

You have the right to privacy, and to be treated with respect and dignity. That includes the right to decline to discuss private medical information with people, and to pass on an opportunity to talk about whether and how you have sex. The only people who truly need information about your sex life are your sexual partners — in intimate personal communication with each other about how to have joyful, delightful sex — and your doctor, when it’s medically relevant. (“I’m thinking about getting pregnant,” “I’m having vaginal pain,” or “I’m worried I might have an STI.”)

It can be hard to figure out how to deal with people asking invasive questions, particularly if you live in a culture where you’re taught to be polite to others, especially elders, and it’s an important part of your values.

It may feel uncomfortable or even wrong to assert yourself, so let’s start with the soft approach, one endorsed by none other than Miss Manners: The “pardon me?”

“Hey, can you, you know…get it up?”

“Pardon me?”

People ask rude questions for all kinds of reasons — genuine curiosity, confusion, a mistaken attempt at conveying interest, or, yeah, rudeness. A (sometimes rather pointed) “pardon me?” is an answer that’s both perfectly polite and unobjectionable while also putting people on blast that what they’re saying probably isn’t very appropriate. By reflecting the question back on the asker this way, you’re forcing them to rethink whether that question is such a good idea.

If they decide to keep pressing the point, it’s okay to say: “That’s none of your business,” “I don’t feel comfortable discussing personal matters with you,” “I don’t think this is relevant to the conversation,” or just, “You’re being rude, please stop.” Sometimes rephrasing the question and tossing it back at them can also send a pretty clear signal that ends this line of conversation — “How do you have sex in a wheelchair?” “Uh, how do you have sex without one?”

It’s okay to be curious — I’m curious about all kinds of things! — but it’s not okay to use actual living humans like a reference textbook.

There are resources available to nondisabled people who are interested in learning more about disability and sexuality that don’t involve querying every disabled person they meet about their personal lives. (Like this one, for example!) Sometimes nondisabled people feel awkward or uncomfortable and it’s not your job to put them at ease, but redirecting the conversation somewhere else can demonstrate that you have interests beyond your disability; shift the conversation to books, cooking, music, film and television, something in the news, or other topical subjects.

Don’t be afraid to ask for a bailout, either. Your friends should be able to back you up when you’re trapped in the corner with someone who’s quizzing you about whether it’s awkward to have sex when you wear an insulin pump. If you’re out with friends, consider arranging a discreet signal that means “come help me!” so you can escape these kinds of conversations. Your nondisabled friends should also know that it’s okay (and welcome) to intervene even without being asked if they see a disabled person being asked invasive personal questions, and encourage them to push back on speculation about the sex lives of disabled people even when we aren’t in the room.

Many people think it’s okay to ask rude questions because no one has told them not to, or they think the rules don’t apply to them. Letting them know it’s not okay isn’t just good for you, it’s good for society.

Wheelchair, Bound? Kink and Disability

Article part of a serie published on www.scarleteen.com on July 28, 2017.

Think you might be a little kinky? You’re not alone — while it’s hard to get specific numbers, the profile of the kink community is definitely on the rise. “Kink” is a very broad and subjective spectrum of sexual and social activities, as Heather notes in our “Working the Kinks Out” primer. You may think handcuffs, whips, chains, ropes, masks, and dog collars, but people define kink in many different ways, including in scenes that explore their emotional and social relationship to each other (sometimes referred to as role playing, which can be done without physical interactions too!). It’s important to note, though, that kink is not universal. Some people don’t find the term a good fit for their lives, and if it’s not a term you like, that’s okay!

If you want to explore various aspects of kink — or whatever you want to call it — there’s absolutely nothing wrong with that, and it can be fun and one way to build rich, fulfilling relationships. However, just as in any community, there are definitely bad actors — predatory and abusive people — in the kink world. Some warning signs can help you differentiate between genuine kinkiness and abusive behavior, but in general, responsible kinksters are very focused on: Open, clear, safe, respectful communication; consent and clearly defined boundaries; respect for each others’ emotions and bodies; autonomy and empowerment; and physical safety in situations where people could be at risk.

Some corners of the community are super welcoming to disabled people because they know what it’s like to be marginalized because of who they are, what their bodies look like, and the nature of their sexual interests. Others may not be so friendly, in which case, their loss! If you want to explore kink, it’s likely to feel best in a respectful environment with people who support your right to access fair, equitable, kind treatment.

Let’s get physical

Some kinky activities may not require any specific adaptations for disabled bodies or brains. Others might, which is why it’s really helpful to be open about the nature of your disability and your limitations with partners. They can only look out for your safety if they know what to look out for. Self-assess your emotional and physical limitations as you look at activities that sound intriguing, from being tied up to some (negotiated) humiliation play — whether you are leading or following those interactions.

When you start having a conversation with a leader, be as clear as you can about the limits that are important to you and make note of warning signs that something is going wrong. A responsible partner — of people who are and also aren’t disabled! — should already be looking for things like strained breathing, color changes in your skin or on your extremities, an extremely fast or slow heart rate, or signs of nonresponsiveness, but you know your body and your mind better than they do. If you have a cognitive impairment and you know that sensory stimulus can sometimes make it hard to communicate, for example, make sure your partner understands that.

If you’re doing the leading, think about your responsibility to keep your partner(s) safe. You may have physical impairments that make it hard to lift or move someone, react quickly in a crisis, or manipulate small objects. Some activities might be challenging, but adaptations can make them fun and sexy. Can’t use rope because it’s hard to grasp? Consider a woven scarf! Have trouble working with someone on a bed? Have them sit in a chair — and tie them to the chair back if they get wriggly. Know that you sometimes struggle with unclear communication? Turn very clear, concise communication into part of the experience.

Some specific risks to consider:

  • Airway safety: If you have difficulty breathing and/or use a ventilator/BiPAP, make sure any positions you use are safe, and tell your partner how to react if you start struggling.
  • Circulatory problems: If your disability interferes with circulation, some positions or activities can be dangerous because they may interrupt bloodflow.
  • Neurological issues: You may have sensation limitations, making it hard to tell if something is breaking skin, burning, or bruising you, or you could have problems standing or sitting for long periods of time. You could also experience referred pain (when someone touches you in one place and it hurts in another) or other unexpected neurological symptoms. For those who experience seizures, it’s important to have a plan in place in the event of a seizure, including ensuring the recipient of your attention is able to contact EMS if necessary.
  • Limited range of motion: Some people like pushing their bodies, but too far can be dangerous. If you feel pain or distress, say so — and let your partner know which kinds of activities just aren’t possible.
  • Cognitive disabilities: If you sometimes have trouble communicating, make a plan ahead of time for facilitating constant, safe conversation, including developing a list of criteria for stopping to take an immediate break.

Many people use safewords to indicate that everything is going great, hey maybe things should slow down, and no, stop immediately. The traffic light approach (“green,” “yellow,” and “red”) is common, but you can come up with something else if you like. Physical signals can also be useful to reinforce messages — or replace verbal cues if you can’t talk. If you have a limited range of motion, spasticity, or other issues that might make it hard to communicate physically, discuss this during your negotiations.

Being adaptable to respond to disability concerns doesn’t mean you can’t have fun, and in fact, sometimes creativity can spark a little evil genius.

If you’re the one wielding the power in a scene, your voice can be an incredible tool, but you can also take advantage of some of the same things you use in daily life to torment your partner. Those grabbers and extenders that help you grasp and navigate the world? Totally adaptable to a physical scene, too. Limited hand strength? You can use the weight of your body as a tool for restraining your partner. You can also bring a third person on the scene to do your bidding, if you want to explore role play.

If you’re the follower — or an equal, depending on how you interact with your partner(s) — you also play an active role in deciding how a scene will play out. You may have adaptive suggestions beforehand that will make the scene more fun and playful. Adaptations will improve and enrich your time together!

Spoken word

While exploring physical sensation together can be intriguing, some people prefer to go verbal (written, spoken, or signed) with a role play. This can make for a fun break, or it might be more your jam, or you might enjoy a mix of the two.

Sometimes role playing can be an interesting way to explore power and control, disablist social structures, and how you relate to the world. Sometimes it can also feel a little too real. A responsible, respectful partner understands when it’s time to stop, either by hearing the word “stop” or picking up on your nonverbal cues, whether they’re leading or following a scene.

Be really specific and clear in negotiations about what you are and aren’t comfortable with (“I don’t like medical role play” “I won’t say that word” “It makes me anxious when…”), and don’t be afraid to safeword out if a scene is making you anxious or causing distress, or to stop a scene as a leader if you feel uncomfortable with the direction it’s headed in. If you know you sometimes go nonverbal or feel a little scrambled when you’re in overload, tell a partner that so they know, and ask them to take it slow and check in regularly — if they ask for feedback and you don’t respond or sound confused, upset, or frustrated, then it’s time to stop.

Afterward

Whether you’ve been involved in an intense physical scene or a dramatic emotional one, kink involves a comedown. Structure time for a break to nurture each other after playing. Sometimes it’s hard to tell what you’ll need after a scene together, especially when playing for the first time, so it’s ideal to have a conversation ahead of time to match up expectations.

  • Physical comfort: Did you lead a scene? Make sure your partner is physically comfortable with cushions, a blanket if needed or wanted, something to drink, and some snacks. Ask your partner if they’re feeling any physical pain or tension. Some people like being touched after a scene —maybe that’s gentle massage, snuggling, brushing their hair — so ask them how they’re doing and whether they’d like more or less attention. On the flip side, communicate with your partner about what you need to be comfortable, and check in with your body. Be aware that endorphins may make it hard to notice pain, dehydration, and other issues at first, so if you feel great, keep checking in with youself.
  • Emotional comfort: The intensity is one of the things some people love about kink, but it can cause a little emotional whiplash for everyone involved in a scene. You might not want to process immediately afterwards, but check in with each other about how you’re doing, and if you have any needs and issues to address. Keep your space calm and relaxing: Think low light, low noise levels, and gentle voices — unless you or your partner is someone who wants lots of stimulation after a scene.
  • Evaluation: After you’ve had time to recover, integrate your play into your ongoing conversation about your relationship. What worked and didn’t work? Did you feel frustrated, disrespected, or ignored? Do you have suggestions for fun things to do in the future, or practical adaptations? Were there communication breakdowns? Why?

It’s also important to note that not all kinky scenes with a partner include or end with sex — no matter the sexual orientations of the people involved in the scene, or even their preexisting relationship. You may like playing with someone you’re not sexually attracted to, may not view kink as a sexual activity, could be asexual, or could absolutely love the way playing together enhances your sex life. This can also be part of your negotiations, whether you’re hoping to integrate sex into role play or you just want to tie someone up and whack them with a whip.

A little shy about getting involved in kink, or not sure where to start? Sometimes local kinky organizations hold “munches,” gatherings that are basically mixers for kinky people, though they are typically 18+. They can be a safer way to meet people, because they’re in a controlled group space, and they can give you a sense of the community and whether or not it’s supportive. There may also be a local coffee shop, art gallery, or other spot known among kinksters if you want to feel things out in an all-ages space and environment that isn’t necessarily sexual.

Sick People Have Sex, Too

Article by Allyson Wendt published The Mighty in October 2017.

Fair warning: this piece is about sex. Specifically, it’s about the fact that people with chronic illnesses are people first, and are often sexually active, just like the rest of humanity.

Now that you’ve been warned, let’s talk about the popular conception of someone with a chronic illness. In a lot of people’s minds, a person with a chronic illness is always sick – in bed or on the couch, unable to do much. In reality, a lot of illnesses vary in severity over time, and people have good days or bad days. For example, I have days when my rheumatoid arthritis is flaring, but also many days when it’s fairly inactive. My migraines vary in severity as well. On bad days, I’m stuck in bed. On good days, I’m fairly productive and active.

That leads us to sex, which is a normal part of human experience. Like everyone else, people with chronic illnesses are sexual beings. The natural ebb and flow of sexual interest is complicated by illness, however, and medications used to treat it. Many medications affect libido and sexual function. Some illnesses make sex uncomfortable for any number of reasons; others limit sexual interest.

People with chronic illness experience sexuality in a variety of ways. They experience a variety of orientations and desires, and self-identify in many different ways. Some want sex a lot, some want it a little and some don’t want sex at all. In other words, people with chronic illnesses are people, and experience the same variety of sexuality we find in humanity in general.

So what’s the point? I suppose it’s that we shouldn’t assume someone with a chronic illnesses isn’t sexually active. And as patients, we should talk to our doctors about the impacts of medications and illnesses on our sex lives.

More broadly, it’s important to remember that people with chronic illnesses are people first. We are not defined by our illnesses, and experience life in all its variety. That includes sex – and a million other things.

Your body is not a sex object: Devotees and sexuality

Article part of a serie published on www.scarleteen.com on July 28, 2017.

When we talk about disabled people having awesome sex lives, sometimes something dehumanizing creeps into the mix: Some (usually nondisabled) people profess an “attraction to disability.” What they mean is they find disabled bodies — not disabled people — sexually stimulating. That means seeing your body as a sexualobject. If that makes the hair on the back of your neck stand up, you’re not alone.

Some refer to it as a fetish, others as an attraction, and some call themselves “devotees.” Devotees say they find disability a big sexual turn-on, and while there are lots of different versions of this particular phenomenon, the community is especially active around amputees, wheelchair users, and people who wear braces or use crutches. This can also manifest in the form of attraction to or obsession with people dealing with mental health conditions.

There’s probably a lot going on psychologically behind devotees, but this isn’t for or about them. We’re interested in the cultural implications of treating members of the disability community like things. This is for and about those of us who are disabled.

People aren’t objects. And yet, objectification — the degrading practice of treating people like things instead of whole human beings — is a very common experience for people in marginalized social groups. You may have heard people talking about how the way we treat women is “objectifying,” for example.

Some devotees are interested in people with physical impairments that may require mobility aids or accessibility tools, including wheelchairs, braces, canes, walkers, and other equipment. Others are more interested in a psychological element — for example, they may romanticize depression, and like the idea of “rescuing” someone with a mental illness or intervening in treatment for drug addiction. Among devotees who do fixate on mental health conditions, some may say they know what’s best for someone and become very controlling, pushing people to drop out of counseling or stop taking medication.

We’re attracted to people — and they to us — for all kinds of different reasons, like their minds, what they look like, and the things they do. Attraction is that thing that starts your heart pumping a little faster, has you feeling a little dizzy and giddy, and can make life feel like a roller coaster when the person you’re interested in is around.

But having someone attracted to you solely on the basis of an identity trait outside your control — like race or disability — usually feels deeply dehumanizing. Just like it will often feel gross to hear people talk about wanting to date a person because they have big breasts, or make explicit comments about Black men’s penises, it will usually feel gross to have someone attracted to you only or primarily because you walk with a cane.

There’s another thing about devotee culture that’s dangerous, too. It also tends to perpetuate myths that “no one else” would ever be interested in dating you by implying your disability is necessarily singular, pervy and weird, and that’s both false and not good.

Throughout your life, people are going to be attracted to you because you’re their jam in a bunch of different ways. Maybe you’re gorgeous, or funny, or smart, or adventurous, or super knowledgeable about something, or kind, or dedicated…everyone has that special combination of traits that gets them going.

Your disability is part of who you are. It’s not the only thing about you, not by a serious long shot. Just as you would be suspicious of anyone who says they’re attracted to you “in spite of” your disability,  it’s reasonable to be wary of people who say they think you’re the bee’s knees because of your disability, unless they’re talking about in the sense of who you are as a whole person.

Think about the difference between: “I’m so happy I started dating Lakshmi, her disability activism and drive make me work to be a better person, she’s so pretty and funny, and she makes amazing roti!” and “I’m so happy I started dating Lakshmi, it’s so hot when I see her on the sidewalk with her wheelchair.”

It’s often pretty easy to identify a devotee, because many people are quite open and loud about their interest. However, some devotees like to prey on disabled people, especially young people who may not be as familiar with the ways of the world, or might not have a lot of relationship experience. As you probably already know, being disabled is one thing that can make you more vulnerable to abuse and abusive people in general. It can also be harder to spot the alarm bells when you’re still super new to this whole dating and relationships thing!

Devotees may:

  • Express a sexual attraction to your disability and/or your mobility devices
  • Take/ask for pictures of you using mobility devices
  • Talk about you primarily in the context of your disability
  • Express a lack of interest in everything else about you
  • Ask you to perform disability-related tasks for them to watch, like transferring in and out of your chair, adjusting your braces, changing catheters or colostomy bags, and similar activities
  • Ask a lot of invasive questions about your disability and how it affects your daily life
  • Push you to stop using necessary medication or equipment
  • Undermine your health care providers, saying they “know what’s best” or suggesting they can take charge of your treatment
  • Romanticize your mental health condition
  • Attempt to make you economically or otherwise dependent on them

Many local disability communities also tend to keep track of known devotees in the area, so if someone is making you uneasy, ask around.

You deserve to date people who are into you for you, not your disabilities; who see you as a person, not an object. Some disabled people do date within the devotee community and say they feel happy, fulfilled, and healthy doing it. As an autonomous human, you get to make your own choices about the dating partners you’re comfortable with and whether you’re open to dating devotees. But whether you are or aren’t comfortable with it, people should be open about the nature of their interest in you, and respectful of your boundaries — including the right to say, “No thanks, I’ll wait for a partner who’s into me for who I am, not for my disability.”

 

Playing the Online Dating Game, in a Wheelchair

Opinion letter by Emily Ladau published on www.nytimes.com on September 27, 2017.

The first time I forayed into online dating, I let my wheelchair show just a little in my photos. The good guys, I hoped, would be so taken by my clever profile and witty banter that they’d be able to look beyond my disability, if they even noticed it at all.

I eagerly began swiping, quickly matching with an attractive man whose profile picture showed him sporting an enormous iguana on his shoulder. Thinking that would make for an easy conversation starter, I messaged him. A few minutes later, he replied, but instead of responding to my reptilian inquiry, he asked, “Are you in a wheelchair?”

I kept my answer simple and told him that yes, I do use a wheelchair, but I was much more interested in the back story of the iguana. Unfortunately, he wasn’t interested at all, messaging back only to say: “Sorry. The wheelchair’s a deal-breaker for me.”

His blunt reply stung, but the feeling was nothing new. Because I was born with my disability — Larsen syndrome, a genetic joint and muscle disorder — I’d already gathered a pile of romantic rejections seemingly big enough to fill an Olympic swimming pool by the time I downloaded Tinder. This particular rejection, however, unleashed a wave of panic within me.

A few months before my initial swipes, I’d gone through a messy breakup with a man I dated for over two years. I truly believed he was the person I’d marry, and that I’d never have to worry about rejection again. When I found myself newly single, I turned to online dating in the hopes of easing my fears that no one else would ever accept me as I am, that lightning doesn’t strike twice.

Not one to be deterred, I persevered, downloading every possible dating app and creating accounts on various dating sites. But I became skittish about revealing my disability, because in an already shallow dating culture, I believed my wheelchair would cause most men to write me off without a second thought. So I decided to hide my disability completely. I cropped my wheelchair out of my photos. I eliminated any mention of it in my profiles. In this virtual world, I could pretend my disability didn’t exist.

I kept up with this facade for a while, messaging matches who were none the wiser. Once I thought I’d spoken with a guy long enough to establish his interest, I’d choose a moment to strike, telling him about my disability. I’d send a long-winded explanation divulging my wheelchair use, reminding him that it didn’t make me any less of person and ending with reassurance that he could ask me questions, should he have any.

After dropping the “wheelchair bomb,” I’d have to brace myself for their reactions, which were always a mixed bag, often ranging from indifference to ghosting. Occasionally, I’d receive an accepting response.

One man that I connected with on Coffee Meets Bagel was incredibly apologetic when I first told him about my wheelchair, as though it was the most tragic thing he’d ever heard. I shut that down by explaining that my disability is part of who I am and it’s nothing to be sorry for. I ended up going on one date with him, and then another. For the second date, my bagel suggested a painting night (a social event that involves paintbrushes, canvases, acrylics and, usually, wine) since I’d told him how much I enjoy them. He found a Groupon and I researched a location, picking out a restaurant in New York City that was supposed to be wheelchair accessible.

As it turned out, the restaurant was accessible, but the painting class was happening in a room upstairs. So, we spent our entire date sitting directly below the painters, eating dinner and making strained conversation with wine-fueled laughter and painting instruction in the background. I was mortified. Following that disaster, I promised my date I’d get his money back. As soon as the company refunded our tickets, I never heard from him again.

It was painful to realize that the hard part isn’t over once someone learns that I’m disabled. Going on dates with me can be a crash course on disability, and I recognize that’s not always easy for non-disabled people to process. But I wasn’t helping the situation by keeping the existence of my disability concealed, springing it upon people only when I thought it felt right. In retrospect, this served only to contribute to the stigma I usually work so hard to fight.

I felt like a hypocrite. In every other area of my life, my disability is front and center. I write and speak endlessly about being a proud, unapologetic disabled woman. It is part of my identity, shaping everything I do and everything I value. But in the online dating world, my disability was my secret shame.

So I decided it was time for a change. I started gradually, making references to my disability throughout my profile, then adding photos in which my wheelchair is clearly visible. I tried to keep things light and humorous. For instance, OKCupid asks users to list six things they can’t live without; one of mine is “the invention of the wheel.”

Still, I found myself having to make sure that potential matches had actually picked up on the trail of clues I’d left. I grew tired of feeling like I needed to deceive men into being interested because society instilled in me that my disability makes me undesirable. Finally, I took the leap I’d been so afraid to make, opening up about disability to strangers whom I hoped would appreciate my honesty and perhaps send me a message.

Prominently in my profile, I wrote: “I’d like to be very upfront about the fact that I use a wheelchair. My disability is part of my identity and I’m a loud, proud disability rights activist, but there is so much more that defines me (you know, like the stuff I’ve got in my profile). I realize some people are hesitant to date a human who experiences the world sitting down. But I’d like to think you’ll keep reading and dive a little deeper. And you’re welcome to ask questions, should you have any.”

Once I added that paragraph, I felt liberated, relieved that anyone I spoke to would have a clearer picture of me. There have been plenty of matches that haven’t worked out, and whether that’s actually because of my disability, I’ll never know. But I had a nearly yearlong relationship with a man I met through OKCupid, so I know it’s possible for lightning to strike again. My dating life remains a comedy of errors, and I still struggle every day with the feeling that my disability means I won’t find love, but at least I’m being true to myself. I’m putting myself out there — my whole self — and it feels good to be proud of who I am.

Consent Is Sexy: Sexual Autonomy and Disability

Article part of a serie published on www.scarleteen.com on July 27, 2017.

We all know that consent can be sexy — and also that navigating sexual consent can be tricky. Sometimes, disability makes it more complicated, so it’s important to take some time out to talk about that as you explore the world of dating and sexuality through the disability lens.

Because so many nondisabled people think disabled people aren’t sexual, conversations about sexual consent and autonomy often don’t include disability, or if they do, it’s only in a negative way, like suggesting that people with certain kinds of impairments aren’t capable of consenting at all. That makes it challenging to learn about this stuff in settings like health and sexual education classes, so if you feel a little at sea, know you’re not alone.

Nondisabled people sometimes like to make the disability community out as a big, confusing puzzle, and they act like this stuff is simple for them, but the secret is that it’s actually not. Consent can be incredibly complicated and it’s constantly shifting and changing within the context of any relationship or interaction. Nondisabled people can and often do find it challenging, may and can miss important signals that something’s not right, and can feel frustrated when they feel like their partners aren’t being clear with them. Those problems are common to all of us, because we’re all humans — sometimes disability can be a complicating factor, but it’s not the complication, because it’s interacting with other humans that’s the tricky part!

So, some things to know:

As a person with a body, you have autonomy and the right to decide if, when, and how you engage in sexual activity. Consent is constantly evolving, and may shift in response to a huge variety of factors — our emotional state, the circumstances of a sexual interaction, time pressures, or physical limitations, for example. Other people should foreground your sexual autonomy and respect your right to give or withdraw consent at any time. You have the right to have conversations about your needs, concerns, and limits.

As a disabled person, you may encounter the common attitude that you are not sexual, which in itself can feel kind of like a violation of consent, because it’s someone else making up their mind about your sexuality for you. If you have cognitive, intellectual, or developmental impairments, you may have heard that it’s also “not possible” for you to exercise consent and autonomy, that you are “incapacitated.” This is dehumanizing, infantilizing, and just plain wrong.

But there may be times when disability interacts with how you communicate or the way your body responds to stimuli, so as you enter the wide world of sexuality, checking in with yourself so you can assess how you exercise consent is important. Knowing yourself as best you can is the first step in communicating your needs to other people, after all! Sometimes it can help to sit down and brainstorm a bit, thinking about how your disability affects the way you navigate the world — another case for the “Big Sexy Three.”

And remember that consent goes both ways, too — maybe you’re very comfortable with communicating and setting boundaries, but you miss cues from other people sometimes. There are ways to stay sexy and accommodate your disability that are emotionally healthy and fun for everyone.

  • Do you sometimes have difficulty verbalizing (speaking, using a signed language, taking advantage of a communication board), and if so, are there other modes of communication you find more comfortable? Do your verbal skills vary depending on factors like stress levels and fatigue, and if so, do you have a way to signal that you need to switch to another communication method?
  • Do you experience involuntary reactions that might send an inadvertent or unclear signal to a partner, like verbal tics or muscle spasms? A partner might interpret a leg twitch as a cue to stop when it doesn’t mean that at all — or means just the opposite! Conversely, a moan could mean “Yes, please” or it could mean, “This pressure on my chest is really uncomfortable and I’m having trouble breathing.”
  • Do you have a mental illness that sometimes causes anxiety when you’re communicating with people, or paranoia/fear about other people’s motivations, or extreme moods that may interfere with your ability to calmly assess people and situations?
  • Do you have a cognitive disability and/or neurodiverse identity that sometimes makes it a little challenging for you to clearly articulate your needs, or for you to pick up on the needs of the people around you? Maybe you have trouble with nonverbal cues, for example, so a partner making a sound or physical gesture doesn’t really provide useful information for you.
  • Do you have a seizure disorder or another condition that might cause memory problems, lost time, or other issues that may lead to temporary impairment that makes consent logistically challenging or impossible?
  • Can you think of other things about your disability that change the way you communicate or sometimes make it harder for you to clearly connect with people?

Affirmative consent is the name of the game: Yes means yes! As you sit down and think about your needs, consider how that can be converted into a deep, authentic conversation about consent. Have trouble with nonverbal cues? Ask your partner to be clear and specific with you, and say you will put the brakes on if you feel like you’re not getting the feedback you need. Sometimes have trouble being verbal yourself? Set up some agreed and unambiguous signals with your partner for things like: Yes, no, keep going, and I’m feeling overwhelmed and need a time out. Teach your partner about the warning signs of emotional or physical overload, seizures, and other issues that mean it’s time to stop immediately and let you have some rest.

If you feel like your mental illness sometimes interferes with your ability to consent, be up front about that too, and resolve to work through challenging or frustrating situations together. If you know that sometimes your mood disorder makes it challenging for you to regulate your responses, for example, don’t be afraid to take a pause for a few hours, a day, or more while you process an unexpected or intense emotional response. If your depression or anxiety can make you withdrawn and interfere with your ability to assert yourself, ask your partner to take it slow so you can build confidence.

Know that emotions outside the bedroom can complicate what’s happening inside it: If you’re stressed out about a big test or you’re having family problems, that may interfere with your ability to make choices that are safe and right for you, and you may need to ask your partner to take a step back. If you’re adjusting to new meds, maybe take some “me time” while you do that so you can learn more about how your body is responding without the complication of getting sexual. Try to avoid using sex as a tool to avoid dealing with anger, depression, and other intense emotions — while you might be able to consent, that doesn’t always mean it’s a good choice for your mental health.

Consent doesn’t have to feel clunky or awkward. You can make it part of a sexy experience together — talking back and forth, asking questions, affirmatively saying “yes, I like that” or asking “is it okay if I…” can be exciting, tantalizing, and fun. It can also help you feel more secure in your sexuality, and more nurtured by your partner, because you’re taking care of each other and going on an adventure together.

Be frank about your limits and needs, but also, ask your partner to do the same. By working together, you can enrich the time you spend together, and create a sexual space that feels safe and affirming for everyone involved. Especially as you get to know each other, don’t be afraid to ask lots of questions and give lots of feedback. As you come to understand your sexy brains and bodies, you’ll learn more about what works and what doesn’t, and you can apply that outside the bedroom, too! Couples that communicate with each other can enjoy a more collaborative relationship, with less friction created by confusion and mixed messages.

Disability sex yes!

Serie of articles published on www.scarleteen.com on July 27, 2017.

This is not the be-all-end-all guide to sex and disability because a) it’s not, and b) there just can’t ever be such a thing with any guide to sex. This series, much like your entire sexual life, is a work in progress and an endless, ongoing conversation. We hope this can be a good place for you to get started, and something that starts you on the path of good feelings about sex and your disability.

Sex and disability aren’t often heard in the same sentence, and when they are, there tends to be a lot of sideways glancing and nervous giggling. After all, disabled people aren’t sexual, right?

Wrongity wrong wrong! (Except for the ones who aren’t, but that’s not because they’re disabled.)

Disabled people have bodies, and many people with bodies enjoy being sexual with them, because it feels good, it’s fun, it allows them to get closer to other humans, or they just want to give it a whirl and see what all the fuss is about. Like other people with bodies, you have autonomy, which includes the right to decide if, when, and how you have sex and engage in other activities.

One of the things I hear most frequently from disabled youth is that they’re super interested in sex, but have no idea where to go. They feel like everyone’s going to make fun of them for wanting to explore their sexuality. I call bull on that — wanting to get sexual isn’t weird or gross just because you have a disability, and you can totally have a rewarding, rich, awesome sex life if you’re disabled – no matter what sex looks like to you and how many people are involved. We’re going to explore sex and disability in this ongoing series, because when people do admit that maybe disabled people might like to have sex, they often don’t provide any information about how this whole thing is supposed to work, and that’s no good at all.

Before we get into the nuts and bolts, though, a few things to keep in mind:

Disabled people can and do have sex

Remember that “sex” isn’t just about penises being inside vaginas, though some disabled people do that, too. Human sexuality is incredibly, amazingly diverse, including because humans come in all shapes and sizes. You’re the designer of your sex life, including whatever limits you need as you decide whether you’re ready or not.

Depending on someone’s impairment and level of disability, people may find the use of adaptive tools like wedges, ramps, and more super helpful — and we’ll be talking about those. People with sensory disabilities or paralysis may need to do some experimenting to figure out what looks and feels right for them. Some people with cognitive disabilities that affect their sensory experiences, ability to communicate, and ability to process information may work with their partners on communication and tactics for dealing with awkward moments. Some disabled people find toys and gear like harnesses incredibly helpful for expressing their sexuality. That’s called “adapting,” and there’s nothing unusual about it — nondisabled people adapt their sexual activities to suit their needs, too!

The unfortunate side of this, of course, is that disabled people can also get sexually transmitted infections and some disabled people can get pregnant, too. Safer sex and birth control should definitely be on your agenda. Fortunately, you have an entire website all about these subjects at your very fingertips.

There is nothing wrong with disabled sexuality

Disabled sexuality is very stigmatized in many cultures, and there are a lot of reasons why, some of which start with the belief that disabled people are “innocent” and need to be protected from the big bad world. You may have encountered attitudes suggesting that disabled people who have sex are freaky or weird, and that disabled people only have sex when there’s a fetish involved. That’s not true — lots of disabled people actually have super mundane sex lives, while others are total kinksters, some of whom are even part of the fetish community, but often their fetishes have nothing to do with disability!

Consensual, joyful sexuality isn’t wrong or weird or gross or freaky, even if your body doesn’t always do what you want it to do or your brain likes to fight you and even if other people want to desexualize you because of your impairment. The only people who should be ashamed of themselves are the ones who think they can dictate what your sexuality looks like because they make assumptions about you on the basis of how your body and brain function.

In fact, there’s also something very right about it. Sometimes adaptations that make sex more accessible, fun, and empowering work to your advantage — like being more conscious about communication and taking advantage of props to get comfortable before you get down for sexytimes.

Being disabled doesn’t mean being dateless

You may also have heard that if you’re interested in sex, you’ll be flying solo, because no one will want to date you with your disability. This is grossly untrue!

THIS IS SO VERY UNTRUE.

Lots of disabled people date, both within and outside the disability community. They also get married, raise families with partners, have casual sex, and much, much more. Nondisabled people seem to operate under the belief that they’ve got a lock on this whole dating and relationships thing, and they’re wrong.

Sometimes people use this line because they’re hoping to convince you they’re your only hope — like they’re doing you some huge favor by wanting to date you, so you should take them up on it while you’ve got the chance. Those people should sit in the corner and think about their life choices, because what they’re doing is not okay and may even be predatory. Never feel like you have to settle for someone out of fear that no one else is going to come along, because they totally will, and they’re going to be great.

Disability can make you more vulnerable

So, disability and sex, yay!

BUT.

Being disabled means you face disablism — discrimination on the basis of your disability status (also called “ableism”). That makes you more vulnerable in many settings, including the world of sexuality, because people may view you as an easy target. Disabled people are much more likely to be victims of violent crimes, including sexual assault, than nondisabled people. As you explore your sexuality, you can become even more vulnerable, because we live in a society that doesn’t respect disabled people, their bodies, and their autonomy.

Frustratingly, one of the places that sometimes happens is in medical contexts. While many people associate disabled people with “the medical system,” you may actually spend varying amounts of time in clinical settings — and health care providers can be abusive too, whether it’s a physically abusive nurse or an emotionally manipulative therapist or anything between. Sometimes that abuse can become disabling, whether someone exacerbates an existing disability or makes you feel small and undermines your sense of independence. Health care is an institution, and institutions (including law enforcement, educational settings, and workplaces) tend to abuse people who are vulnerable.

You’re at increased risk of sexual assault, harassment, and other abuse because of society: It is not ever your fault if you are or have been sexually harassed, abused, or assaulted. You deserve to be treated with care and respect, your emotions are valid, and it is not acceptable for the people around you to sweep your experience of trauma under the carpet. 

There are lots of resources available to help you. You may find that some sexual assault crisis centers, hotlines, and services are inaccessible and/or disablist, and that’s a reflection on them, not you. You may also find that should you choose to report, school officials, parents, law enforcement, and other parties may not take you as seriously, and that is also a reflection on them, not you. You know yourself, you know your body, and you know when someone has crossed a line.

We’re going to be talking about issues like how to adapt sex and your environment to meet your body where it is, having sex while autistic, sex and mental health, disability and kink, sexual autonomy and consent, and how to deal with rude nondisabled people who should really know better.

How can you use this series?

Like I said up top, this isn’t the be-all-end-all. It’s also not designed to be read in any particular order. You can just read the pieces most relevant to you, or the ones you’re most curious about, in whatever order you want, whenever you want to read them. Plus, you can share the series (so far) with friends and partners who might benefit from it.

As you’re reading, it can be helpful to think about self-assessment and larger conversations. For example, you can have very long conversations or a lot to say to a sexual partner about which props you need, and which work better or worse, for what sexual activities, and how you like to use them. You can also explore your emotional reaction to sex in some settings, or to sex in general!

But there are likely to be situations where you prefer a quicker “basics” conversation; a simple primer on you and your needs, not an at-length conversation. You’re here for a quick makeout, not a long-term relationship. Sometimes, just making sure the other person knows that it’s 100% necessary your lower back is always supported or else and that it works best for them to let you pick the prop is just fine.

Think about your three most important accommodation needs in a sexual context — what we’re calling the “Big Sexy Three.” What does a partner absolutely need to know about you for you to have a safe, fun, and enjoyable time together, whether you’re making out for the first time or in a long-term relationship?

Maybe it’s: “My head needs to be supported at all times, I need you to check in before touching me, and you need to be careful with my ventilator tubing.” Or: “I’m not comfortable on my knees, I prefer to transfer out of my chair on my own, and please look at me when you’re talking so I can read your lips.” Or: “Sometimes I shut down when I’m overstimulated, so I need to take a break if I start getting quiet; I really strongly dislike the sensation of this particular brand of lube, and it’s hard to breathe when I’m on my back.” We made a little shorthand card for you to use — and for you, the “Big Sexy Three” might be a “Big Sexy Two” or a “Big Sexy Five” — that’s okay!

a card that lets you write out and share your big 3

Are you looking for realtime resources on sexual health, including someone to talk to about sexual assault? Take advantage of the message boards as well as our other direct services, like chat and text — or you can shoot us an email if you’re struggling and need help. We’d also like to hear from you about other topics around sex and disability that you’d like to see explored or addressed that we haven’t gotten to yet. The best sexual health — and the best sexual health education, in our long and humble opinion — is collaborative!

Many thanks to contributors and consultants to this series, including Kayla Whaley

Mixed Messages: Ableism in Dating

Article by Aimee Louw originally published on www.canadianwomen.org on March 20, 2017
Ableism can be defined as systemic discrimination based on disability. You know, those encounters you have that make you feel bad about your disability, or those barriers that prevent you from having your needs or desires met.
Ableism shows up everywhere. And for women or femmes or gender non-binary people, sometimes it’s hard to pinpoint whether it’s misogyny, ableism, or a gnarly combination.
So how does ableism enter the dating world?
“Ableism in dating is not overt, aggressive or necessarily oppressive. It is the things NOT SAID, the quiet questions, the missed opportunities born out of fear…” said Andrew Gurza, founder of the Disability After Dark podcast.
Often, the way that disability and accessibility are perceived can affect dating. Personally, I’ve learned that feminist crip rage isn’t understood or appreciated by all dates. (I mean, it is to me, but.) Dates who aren’t familiar with this area of advocacy and intimacy may find accessibility too demanding. It might seem like too much for people who don’t see ableism as a social problem.
Below are a few instances of ableism gathered from people in Quebec and Ontario, and some of my own experiences. These are excerpts from interviews and conversations I conducted during my time working for the Fédération du Québec pour le planning des naissances (FQPN), co-coordinating the ACSEXE+ project in 2015.
Often, when it comes to disability, there can be confusion about the way we move or communicate or perceive things, and also confusion as to what our body language is telling another person or how that other person should interact with us.
One anonymous respondent said:
“The most common experiences that I have gone through have been attached to the wheelchair and my speech disability and the connotations that others have when they’re not aware of my disability. Challenges are seen in the form of:
a) not being able to enter a popular bar or club that a date would have liked to spend a night out at;
b) the appearance of being drunk due to lack of coordination and slurred speech; or
c) the first time awkwardness linked to getting intimate.”
Meeting people can be a challenge for some disabled people for several reasons, including ableist assumptions about us. This anonymous interviewee talked about their experience with online dating:
“There are all kinds of reactions. Most of the time people feel sorry, and that hurts just as when someone stops replying because they got scared.”
Queer dating scenes don’t seem to be an exception to this. One queer respondent put it this way:
“I tried online dating a couple of times. I found it so stressful. Having to come out as disabled because it is not obvious online in my case. Having to perform the story: “Hey I’m disabled but it’s not that bad.” I can’t do it anymore. It makes me sick. Many friends tell me I should make more effort and date more often, but I just don’t feel like I have the energy for that right now.”
In my experience, there are very particular looks for “types” that we can use to identify or signal other queers to us. If, for reasons of body stuff or mobilizing or the way that we communicate, we don’t fit into those categories, or if we don’t want to, it can be a lot harder to meet people or even enter into queer dating scenes.
Some people said there was more ableism in the families of partners than with partners themselves. This anonymous accessibility activist said:
“Most of the people I was seeing were friends before, so… they already knew [about my disability]. The only ableist aspect with seeing friends is that they were more concerned with how their families would react to our relationship. It was like, ‘yeah, we could get serious, but it’s gonna get complicated with our families talking’. They were being honest, I guess.”
Another anonymous interviewee shared similar experiences:
“I’ve observed ableism from the family and friends of the individuals I have dated in past.”
A memorable moment for me: a family gathering of my boyfriend’s at the time. I was strongly encouraged to change his nephew’s diaper while being questioned by his mother about my potential as a child bearer. Here, my gender and her curiosity about my disability, and the expectation that I would be the future primary caregiver of desired grandchildren, combined to make for a particularly strange gathering around the changing table. Awkward!
And on staying in the wrong relationship our anonymous activist said:
“There are two main fears: 1) not being accepted and 2) being alone. I [have] stayed in relationships so that I wouldn’t be alone. But you’re hurting yourself, because it’s like a poison that seeps in the farther you go. You get to a point where you say, how did we get here? Wish we had dealt with this earlier…”
When it comes to women, femmes,girls and gender non-binary people, there are multiple layers of awkward or weird comments and unwelcome commentary. I can’t even count the times that I man has tried to get my attention or ask me out by first saying something like “oh what’s a pretty girl like you doing in that wheelchair?” Or the time I was out on a date with a man and he was confused and also endeared by the fact that I moved my body differently than him. There’s a specific kind of condescending questioning that this man – like others before him – felt in accessing information about my body. He felt completely entitled to ask me questions that were based on the assumption that I was abnormal and as such, needed to provide him with an explanation. All this on a first date!
As women and femmes we are under a lot of pressure to perform, be pretty, be sexy, fit images of femininity, say the right thing and when we have another differentiating factors such as a visible or invisible disability, there can be many constricted social requirements for us to comply with in order to feel accepted.
“People consider us as disabled people and not as disabled women” said Isabelle Boisvert during an interview, pointing out the common experience of being desexualised in a culture that equates women’s sexuality with a narrow image. I think disabled people across the board and across the gender spectrum receive this question a lot: ‘can you have sex?’
How many of my disabled, sick, Deaf sisters and siblings have encountered the condescending “let me help you with that”, as though we couldn’t possibly know what we need or how to navigate? Or had a date actually ignore a request for assistance in another way or in the way that actually would help?
This has definitely come up on more than one date with a man in my life: the chauvinistic and paternalistic “wow, you do so well, considering”, draws on a pervasive assumption that my disability prevents me from living my life. Inaccurate.
My advice? It can be really hard to distinguish between sexism, misogyny and ableism, but one thing is clear: If you’re feeling stigmatized or uncomfortable in dating, listen to your instincts. Ableism and other forms of discrimination often find obvious and subtle ways to enter into our dating lives.
For me, part of overthrowing ableism is dismantling misogyny and vice versa. They’re completely intertwined and harmful to people of all genders.
Feminist responses to ableism in dating include defending respect and sexual freedom for all disabled people. Accessibilizing is a process.
These acts of resistance can take many forms, including challenging ableist comments, resisting the urge to ask uninvited questions, ensuring a venue or show is accessible for your date, supporting disabled family members in their dating pursuits, negotiating consent with cards or a list, working for physical accessibility, learning sign language and more. If we join together, we can break down all kinds of barriers and go on some great dates.
Thank you so much to those respondents who shared their insights and experiences. It’s important to note that these respondents aren’t representative of their communities, however, as there is no universal experience of disability, there is also no universal design when it comes to accessible dating. There are certainly commonalities between stories, but each experience and story is particular to the teller.
If you have ways that you’ve experienced ableism in dating and want to share them for a future piece or just to vent, you can email Aimee at aimee@underwatercity.ca. You can also visit her website http://aimeelouw.com and her blog http://underwatercityproject.tumblr.com/ for more.

Sexual health for people with disabilities focus of new training program

Article by Wallis Snowdon published on March 7th, 2017, on CBC  Edmonton website.

‘They just see the disability, and that’s not who I am. I’m a whole woman. I’m a whole person’

Michelle Bissell had heard it before, even from complete strangers.

“People with disabilities should not have sex.”

The Edmonton woman, who has cerebral palsy, is hoping a new University of Alberta training program for medical professionals will help empower people with disabilities to learn more about their sexual health, and ease some of the stigma that persists in society.

“It’s just awful, because obviously they don’t see me as a whole person. They just see the disability, and that’s not who I am. I’m a whole woman. I’m a whole person,” said Bissell, a longtime advocate for disability awareness.

“In a lot of respects, the medical field glazes over that part, because people with disabilities aren’t thought of in society as a sexual beings.”

‘It is a taboo subject’

The Online Certificate in Sexual Health program was recently launched by the U of A’s faculty of rehabilitation medicine. The course, led by sexual health expert Shaniff Esmail, is intended to train more health-care professionals about the relationship between sexual health and disability, and how to approach it with respect.

Sexual health is a topic everyone struggles with, said Esmail, adding that most doctors feel ill-prepared for these sensitive conversations with their patients.

“The biggest barrier is that sex isn’t talked about. There are very few programs and unfortunately it is a taboo subject,” said Esmail, a professor and associate chair in the U of A’s department of occupational therapy. “I was surprised when I started doing some research that there is very little to no programming for people with disabilities.”

The post-graduate certificate program is the only one of its kind currently in Canada.

The demand for the program was so high that a second round of students was admitted in January 2017, the university said in a statement. Currently, 20 students are making their way through the program.

‘It can be scary’

Statistics Canada reported in 2012 that almost 14 per cent of the Canadian population aged 15 or older reported having a disability that limited their everyday activities.

Up to 3.8 million Canadians, if not more, are experiencing sexual health issues, and the demand for better training in the medical community only continues to grow, said Esmail.

However, the sexual health of patients with physical and cognitive limitations is often ignored by those charged with their care and recovery.

“People with disabilities tend to be systematically asexualized,” Esmail said. “They don’t get the opportunities or resources to actually learn about sexuality.

“Whether it’s their parents, teachers, or significant others, sexuality is something that people with disabilities have been isolated from.”

Bissell, who will be lecturing regularly in the new program, wants to ensure others don’t feel the isolation and fear she has experienced.

“I was born with CP so I’ve always been like this, but someone who has been injured who can no longer make love, that can be a lot,” Bissell said.

“People are released from the hospital and they don’t know how to handle things. It can be scary, especially if someone was in an accident mid-life. They need to have those conversations.”

 

 

The Last Taboo

STORYLINE

These persons share their outlooks on affection, connection, friendships, relationships and, according to their experiences, they share what they’ve learned about themselves. Basically, the overall idea of the film is that… “In bed, everyone’s able.”

The maker of this film, Alexander Freeman, had never felt comfortable with his own sexuality. It was always that strange thing that he wanted so badly to explore, because in order for you to really understand yourself you have to be able to experience the touch of another person. One time a girl who was a friend of his gave him an experience that changed how he saw his own sexuality. It was the first time that he felt attractive. But he still had questions. He decided to find out why it is perceived to be the last taboo. He has cerebral palsy, which basically means that he doesn’t have total control over his muscles. But, everything still works down there.

The problem with the word “disability” is that it has a negative connotation from the get-go. It automatically implies that there’s something that somebody “can’t”, or something that somebody “isn’t”, and that becomes defining, foundational definition of the way somebody thinks of somebody and then it spills over everything including sexuality.

People will look at something and they’ll think it’s beautiful if it falls under certain guidelines and that is what puts so much stigma on the idea of someone with a disability being a sexual person, because people can’t quite connect the dots between the idea that someone has a non-normative body or presentation and the fact that they might be sexual.

The Last Taboo conveys a captivating and comforting story of six people with different physical disabilities and a fit partner who was in a relationship with one of them.