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.

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.”

 

Taking Your Body for a Ride: Masturbation and Disability

Because disabled sexuality is a source of so much pointed silence, it can be hard to think of yourself as a sexualbeing, and you have a right to be sexually autonomous, no matter what messages you might be getting from media, pop culture, and society. If you’re also a young person, or a member of another group whose sexuality makes other people extra uncomfortable, this can be extra challenging. The stigma surrounding sex and disability means you may also have received a lot of messaging about how masturbation is yucky and not okay. It’s hard to overcome that, and it can be a long journey, but we’re here for you.

Maybe you feel a little awkward or dorky about wanting to explore yourself, and you’re not alone — you’re also not alone if you feel just fine about it, but you’re stymied when it comes to where to begin…

…which is with some basic anatomy. We have a great guide on anatomy that’s focused not just on informative things like what you’ll find where, but how to view your entire body’s sexual health and autonomy. Sexual anatomy isn’t just about genitals or breasts. It’s also about that sexy brain of yours! Your skin! Lips! Ears! Nose! Toes! Exploring your body on its own is a great way to relax and find out more about yourself, but you can also squirrel away some information for future reference in partnered sex and your “Big Sexy Three” — if that’s your thing.

Think big: Masturbation goes beyond genital stimulation and can include what some people refer to as “sensation play,” which is fun for everyone, but can be particularly great if your genitals aren’t in the mood or you want to switch things up a little. Sensation play takes advantage of one of your biggest and coolest erogenous zones: The skin. You may have already noticed that some sensations give you a little shivery feeling — the brush of a hand at just the right pressure, for example. You can harness that to learn more about what feels good and where.

Set aside some serious time, and don’t push or rush yourself. It may take you a while to figure out how to get comfortably situated and discover what works for you, and you don’t want to be interrupted. If you’re worried about family members or aides disturbing you and you don’t feel like discussing your sex life with them, consider asking for a few hours of rest so you can take a “nap.”

Fun note: Because we’re so used to adapting things to make the world work for us, we tend to be pretty creative when it comes to sexuality!

Props, props, props

Even nondisabled people use props — they can change the experience of solo or partnered sex a lot! They may help you masturbate more comfortably, and can free up resources so you can concentrate on the fun stuff instead of an ouch. While some sex stores sell fantastic props and tools for solo and partnered sex, you can also easily improvise, and in the case of some specialty items, you might actually be better off with improvisational work.

First on your list might be some wedges, which you can use to find a comfortable position to support your body. You may already have some around, especially if you have limited mobility and you use wedges or pillows to help support yourself. They can be pricey at a sex store, but medical supply stores often sell their own versions for much less. Play around with different positions to find a way to cradle your body that feels safe and comfortable — and allows you to more easily access areas of interest (which don’t necessarily have to be your genitals!). If you can’t find or purchase wedges, you can also use folded blankets, towels, or sturdy cushions.

You may have good hand mobility and dexterity that you can put to use, but that doesn’t mean you can’t use toys and tools to explore your body. Our DIY sex toy guide has some tips and tools, and you can also experiment with various things from around the house — but remember the safety tips!

  • Cover any and all objects used with a condom — if you don’t have one, a latex or nitrile glove can be a good substitute
  • No objects with sharp edges or pointy bits
  • Do not use anything that could possibly shatter, splinter, or break off inside you
  • Objects with electrical currents are for outside use only
  • Do not use anything that belongs to or that you share with another person
  • Do not use electric objects in the tub or shower

If your hands need a break — or you just want to play with toys because they’re fun — some vibrators have long ergonomic handles that make them easier for you to use. Remote-controlled toys are another option, as you can slip them into your pants or underwear and control their speed and intensity — consider picking up a harness or a pair of underwear with a pocket, or sewing one into an existing set, so the vibrator doesn’t migrate. Depending on your level of impairment, setting up a vibe and lowering yourself onto it is another option.

These techniques work for genitals of all shapes and sizes, though you may need to do some experimentation to figure out what feels right to you. For those of you sporting a penis, a masturbation sleeve can be a great tool if you have difficulty using your hand alone (or want to experiment with different sensations).

If you’re a wheelchair user, one of our sexy crip experts tells me, you’re in luck: Your wheelchair can be a tool for sexual expression too.

Use a powerchair? Explore the tilt function to get your body in a comfortable position for self-exploration. Depending on your mobility, explore the sensation of shifting or rubbing your weight on the seat. Go for a jiggly, bumpy ride on a rough surface. Play around with the position of your belt and/or straps if you want to see what light bondage feels like. But remember to wash your seat cushion on a regular schedule!

On the rest of your body, pretty much anything can become a tool for sensation play: Feathers, back scratchers, dull forks, paddles, hairbrushes…anything that feels different and intriguing. If you have limited dexterity, you can grab a rod and attach items to it for greater and more comfortable reach. One cool thing about many sensation play toys is that you can keep them around while retaining your privacy, because a pencil on the nightstand or a fork you haven’t had a chance to take back to the kitchen yet doesn’t raise any eyebrows, and lots of people have grabby sticks to help them grasp objects.

And did we mention that you have a big, sexy brain? If getting physical is a challenge — you’re not in the mood, you don’t have time, or your living situation isn’t ideal — go old-school. Read some sexy stories! Write some sexy poetry! Find imagery that gets you feeling sexy! Play some sexy music!

When Sensory Stimulation Isn’t

Depending on the nature of your impairment, there may be some parts of your body where you don’t have that much sensation, but for some, the opposite problem holds true. Chronic pain and a variety of other conditions can mean that the wrong sensation in the wrong place is super uncomfortable — or agonizing. You may know your body and its limits when it comes to everyday life, from “ugh, sheets dragging on my skin feels like a nightmare” to “I really don’t like squishy textures,” but you might surprise yourself when you explore your body sexually. Maybe something that seems like it should feel fine, or really good, doesn’t — or maybe your sensory tolerance changes from day to day.

If you have a vagina and you notice persistent pain and discomfort, you might be looking at our old enemy vaginismus, or vulvodynia. Testicular pain and soreness, or a tender foreskin, could also be signs of a problem. While a wide variety of sensory experiences is a part of life, extreme pain and discomfort are cause for concern, and you should talk to your doctor. Need tips on frank and sometimes uncomfy conversations with docs? We’ve got your back!

It can be frustrating when it feels like your body is making war on you when all you want to do is get off! Backing off and taking a break isn’t giving in, though — it’s giving your body some breathing room. If this becomes a recurrent problem, though, bring it up with your doctor. You have the right to live comfortably, and that includes the right to be sexual, so if pain and unpleasant sensations are limiting your sex life, that means they’re a drag on your quality of life, and that’s not good. Remember that in many nations, you’re entitled to privacy, and you can ask a parent or aide to leave the room so you can discuss concerns about your sexuality in private.

Assistance Required

If you use an aide or personal care attendant to help you with tasks of daily living, masturbation can feel pretty complicated — you may need help with things like transferring to your bed, getting your body situated, locating the toys and tools you want to use, setting up vibrators, and more. Because your aide is an employee (and sometimes also a family member), there are some complicated issues to navigate when it comes to sexuality. You may want to maintain a bright line between their work and your sexuality to avoid creating discomfort.

If you’re interested in exploring your sexuality, you can have a frank conversation with your aide about what you’re interested in so the two of you can set some boundaries and discuss what’s possible. It’s okay to feel awkward about that conversation! But remember that sexual pleasure is part of your overall health and wellbeing and you are entitled to be able to masturbate. Discuss your physical needs from a practical perspective — “I would like help setting up bolsters and transferring to the bed or couch” — and focus on making them as similar as possible to tasks your aide may already be completing for you. Your aide may already help you on a daily basis by setting out items you use, for example, or assisting with attaching things to extenders or grabbers so you can use them independently.

Similarly, your aide may spend time around your genitals in a health care context — they may assist you with putting on underwear and taking it off and toileting, for instance. Focus on the practicalities of issues like “I would like help cleaning up.” It may feel clinical and pretty unsexy, but it can also help maintain personal boundaries — you’re asking them to enable you to masturbate safely and comfortably, not to do the work for you.

Your aide (or family member) may decide that they should be in control of your sexuality — and that specifically, you shouldn’t have any. That’s not actually their call to make, but you may have limited options when it comes to things like firing them, especially if you’re a minor. Or you may feel too uncomfortable to have a discussion about it right now, in which case safe workarounds may be your best option — like waiting until bedtime to have some me time, when you know you won’t be interrupted! If your aide isn’t supportive of your needs, it’s time to get crafty, and think about requests that would give you a little private time to explore paired with the tools you need without being explicit about what you’re doing.

Sex & Dating While Disabled: Three Women Share What It’s Really Like

Article originaly published on Flare on Feb 14, 2017.

Sex and dating with a disability can be pretty f-cking awkward, whether it’s locating an accessible place to meet for a first date, or finding a caregiver who can operate your vibrator for you. Here, three women who have been there share their experiences—bad and good.

Seven years ago, Stephanie Dixon, the 17-time Paralympic medallist who was widely considered to be one of the best female swimmers in the world, appeared on billboards across the country. In the ad, Dixon, then 26, exudes confidence and defiance in a black one-piece suit: her eyebrow is cocked, her arms are crossed, and her biceps look cut as she poses next to a slogan that reads, “She doesn’t want your sympathy. But her opponents might.” Dixon stands tall and elegant against the stark white backdrop, her left leg muscular and shapely. Her right leg is missing, because she was born a congenital amputee. “It looks like I was designed to have one leg, like a mermaid’s body,” she says.

Dixon looks every bit the poised, self-possessed Olympian, and she was—except for one area of her life in which she felt painfully insecure. “People assumed I was very confident in my body, traipsing around in a bathing suit,” says Dixon. “But that’s very different from being considered a sexual being by someone you’re attracted to.”

For years, Dixon was afraid that potential partners would be disgusted by her body. “I wanted to have sex. I just didn’t think anyone would want to have sex with me,” she says. Because she is missing her leg, she also has only half a bum and half a pelvis, and she was worried that her vagina was disfigured—she’d never compared hers to anyone else’s. Growing up in Brampton, Ont., Dixon’s sex education came entirely from friends (and one incident where, at her mom’s insistence, she and her older brother practiced rolling condoms onto bananas). As a swimmer, she’d gotten used to using tampons at an early age. But accessing the world of dating and sex felt terrifying. In high school, Dixon wore her prosthetic leg under jeans every day to fit in, but it wasn’t until she was 15, and began competing in Paralympic competitions—where everyone was contending with some type of challenge—that she felt comfortable getting her flirt on.

Still, that confidence didn’t translate to her day-to-day life outside the pool. By 19, she’d fallen into a pattern of only making out with men when she was drunk. In university, she would panic when someone showed interest in her at a bar. “Say someone wants to take you home—that is an awkward f-cking conversation,” Dixon says. “At what point do you let them know that one leg is going to be coming off?”

Dating and sex are complicated under the best of circumstances. If you’re living with a disability, the obstacles and challenges extend far beyond the “does-he-like-me?” stress that follows a blind date or the “is-she-into-it?” worries that come with a new sexual partner. Imagine revealing a hidden physical disability to a date for the first time. Finding a caregiver who can operate your vibrator for you, or readjust your limbs (and sometimes those of your partner) into the correct positions so you’re comfortable and don’t get pressure sores. Maybe even asking your partner to help you empty your catheter bag before you go to sleep. Any of those scenarios would do a number on your self-esteem. The challenges of dating with a disability don’t begin and end in the bedroom—they start with education, move to dating and accessible spaces and encompass sexual preferences that may change as your disability does.

***

While schools across Canada are still debating what broad information about sex education is appropriate, and when to teach it, specific education about sexual health and disability isn’t even on their radar. For years after Kaleigh Trace, 30, sustained an incomplete spinal cord injury at age 9–which landed her in a wheelchair and affected her mobility, sensation, and bladder control–she received absolutely zero information about sex. “There wasn’t a lot of [sex ed], especially in rural Canada. I guess we had one day when we were brought to the gym [to learn]. But I didn’t attend gym classes,” says Trace, who’s now an educator at Halifax sex shop Venus Envy and author of Hot, Wet, and Shaking: How I Learned to Talk About Sex. Instead, she learned sex education from peers, books or Cosmo—and none of it related to having sex in positions conducive to a wheelchair. “A lot of sex books will say, your vagina will get wet or your clitoris will expand. But definitely lots of vaginas don’t get wet. My sensation is just different. The things some people say will feel good won’t necessarily feel good for me,” says Trace. “So I did what a lot of marginalized people do—I pretended I wasn’t different.”

By the time she was ready to be sexually active, Trace was no longer in a wheelchair. But she was using two canes to walk, and still had to contend with bladder and bowel issues. Thanks to her mother, who had always been open and positive about sex, Trace applied at Venus Envy when she was 22 and was hired. Around the same time, she began masturbating more and figuring out what worked for her body. “A little bit late to start figuring out how to have an orgasm, but whatever,” she jokes. While Venus Envy was fielding frequent requests for information about sex and disability, Trace was the only educator on staff who actually had one. So she began to teach herself (and eventually others) about men’s bodies, about how antidepressants can affect libido, about the ways in which people who live with cerebral palsy and other conditions can have sex—and eventually started a blog, The Fucking Facts, to address some of those questions. “Nova Scotia is a really poor province. There’s no funding here to look at sexuality, so it falls on the hands of whoever is comfortable talking about it,” she says. And although there’s more information out there now than when she started at Venus Envy eight years ago, she’s still longing for more pop culture portrayals of disabled people being sexy. “‘We’re always asking each other, who do you read? What do you watch? Where can I find stuff?’” The internet offers up some quality, positive porn featuring differently-abled stars—Lyric Seal, a disabled actor in a wheelchair, does porn for the site CrashPad, and Torontonian Loree Erickson also acts in porn that features her wheelchair, including her 2009 acclaimed film, Want. But these portrayals still exist on the fringes, and finding them is not easy.

***

Pop culture, from which we take so many of our sexual cues, has been sorely lacking when it comes to realistic depictions of sex and disability. In an episode of Sex and the City from 2000, Samantha has sex with a man with dwarfism (though not before callously asking her friends how short one must be to be considered “a little person”). Eight years ago, Friday Night Lights quarterback Jason Street has an affair with (and impregnates) a woman as he explores his post-accident life as a quadriplegic. More recently, Game of Thrones has featured characters with disabilities that range from a spinal cord injury to an amputated hand to dwarfism. And in the fashion world, Jillian Mercado, a model with muscular dystrophy who uses an electric wheelchair, has appeared in campaigns for Diesel and Beyoncé. “I think we’re making huge strides forward,” says Stella Palikarova, 36, an activist and academic who focuses on sex and disability. “People’s awareness levels are different now.”

Palikarova was born with a genetic predisposition for a neurological condition called spinal-muscular atrophy, which impedes development of motor neurons and affects her muscle strength. The condition was triggered when she was eight months old. Growing up, it meant driving a power wheelchair around her hometown of Dartmouth, N.S., and missing out on some of the quintessential partying and hookup experiences of high school. But she received thorough sex ed (her teacher offered the class a literal taste of spermicide, and they practised rolling condoms onto a wooden penis named Woody), and Palikarova grew up feeling like she had a lot to offer a potential partner. In grade 12, she met a man nine years older than she was through a family friend and the pair dated for around five months. There were challenges: Palikarova can’t lift or dress herself, and she was 4″11′ to her boyfriend’s 6″6′. But they’d had fun laughing together and going out on coffee dates, and she felt safe and comfortable with him. Soon, they were going their separate ways—she to university in Toronto, and he to a new job in Connecticut. The day before he moved, he invited her over to say goodbye. There were boxes strewn everywhere, and things quickly turned sexual. Still, it wasn’t perfect: “He was trying to carry me into his bedroom and bumped my head against a wall,” she says. “We were both really nervous. He had a really difficult time staying hard.” She thought it was her fault.

As her 20s went on, online dating became the most straightforward way to meet people, and Palikarova, who’d always felt like a pretty sexual person, was keen to broaden her experiences. She’s had some success on sites like Plenty of Fish and OKCupid, though there are still challenges. “You don’t want to come across as labelling yourself, like, Hi, I’m a 30-year-old woman with one leg. It defines you,” she says. “But then you don’t want to show up on a first date and put your date in an awkward position.” It can also be difficult to find accessible buildings in Toronto to accommodate her wheelchair, whether it’s a hot bar to meet for a drink or a date’s apartment building if things are going well.

Dating with a disability makes issues of trust and consent even more crucial, and Palikarova has encountered a few unsafe situations. “I had consented to have sex with one guy and I told him to put a condom on and he didn’t, and there was nothing I could do,” she says. He had unprotected sex with her anyway. “I didn’t say anything, he dressed me, put me back in my chair and left, and I never talked to him again.” Although she agrees that what happened was a sexual assault, she never reported it to the police. “I blamed myself to some extent. I mean, I’m a disabled woman who invited a guy over to her home that she had never met before, for sex. It wasn’t smart. It never is,” she says. She thought by expressing that she wanted to stop, the situation might get violent, so she didn’t. Now she tries not to think about it.

Access to surrogate workers willing to assist with these types of interactions could help prevent situations like the one Palikarova encountered, or at least make people with disabilities feel more confident in asking what they need from a partner and asserting themselves when necessary. In places like the Netherlands, people living with disabilities are able to claim the costs associated with hiring a sex worker as a medical expense as often as twelve times a year. In Australia, a charity called Touching Base connects sex workers to disabled people through a referral list of disability-friendly sex service providers. In some cases, the sex workers are hired to have sex with their clients. In others, they’re hired to help a client have sex with his or her partner. And in Vancouver, a company called Sensual Solutions employs intimacy coaches who will massage, caress or guide someone through a sexual experience for $225 an hour. But in Toronto, it’s much more difficult to find someone who will help facilitate a sexual experience between two people, particularly if you’re a heterosexual cis woman. As far as Palikarova knows, there’s no one in the city who includes sexual assistance as part of their personal support work, and she’s had difficulty finding caregivers who understand that healthy sexual activity is a right for all, not a privilege for the able-bodied. “When I hire caregivers, I definitely look for people who are comfortable with the fact that I’m sexually active or that I may have overnight guests sometimes,” she says. “I need help getting ready for a date, shaving, grooming, all the prepping that goes into that. What if I want to surprise my date with some sexy lingerie? They have to be okay with those kinds of things.”

So in 2015, Palikarova helped organize Deliciously Disabled, the country’s first disabled sex party. A care worker helped her put on a black bra stitched with multi-coloured Swarovski crystals. Her hair was curled, her big green eyes lined to precision. A lift was mounted to the ceiling of the venue in order to help get people out of their wheelchairs and into beds, and there were private rooms off to the side so participants could fool around or have sex, which some did. “People with disabilities so commonly don’t even have access to their own bodies,” Palikarova says. “You may not even be in a position where you’re able to pleasure yourself or masturbate. That’s a huge issue! It goes on the same list of human rights as being able to eat, or use the washroom. I don’t think you can segregate experiences of being human like that.” While plans for a second party last summer didn’t work out because of lagging ticket sales, Palikarova says she’d love to host another one if the opportunity arose. She also recently launched a new platform, Boundless in the City, to share her experience of living and dating with a disability.

***

In 2014, a British newspaper survey found that 94 percent of people haven’t had sex with a person with a physical disability. More shocking, though, was the 44 percent who said they wouldn’t, which can be a tough realization if you’ve acquired a disability as an adult and have to relearn how to navigate the dating scene. Zoe Vourantoni, who works as a sex therapist at Lucie Bruneau Rehabilitation Facility in Montreal and also runs a private practice, works with many such patients. She focuses less on demonstrating positions to clients who may be newly unfamiliar with their bodies (though there is some of that) and more about the psychology of having sex with someone if your body works differently or if you’ve sustained an injury. “Men will say, I have to watch my wife unload the groceries or shovel the driveway—I don’t feel like a man,” she says. “You have the intimidation of meeting new people, the grief you have losing the sexuality you once had.”

A large part of Vourantoni’s job is working with clients to restore some of the confidence they may have lost since an injury occurred—making them feel desirable again. “You’re looking for what you know and it’s not there,” she says. “The work is going to be a little bit more about the grief of having to take medications, that sexual function has changed, or having trouble with positions and moving around.” She also helps her clients with their communication styles, something many of her able-bodied clients need assistance with too. “One lady I worked with was young, really attractive and had a degenerative disease. After working with me, she got up the courage to go away on a girls’ weekend and got hit on at her hotel. She had a one-night stand and had to wear Depends before and after,” she says. “Her partner didn’t even blink an eye, he was fine with it. The idea is really to talk to your partner about what you’re worried about. You’re going to have some time between ‘hello’ and getting naked to address those fears.”

Vourantoni’s job also involves working to explore parts of the body that can feel unfamiliar after a devastating accident. Research shows, for example, that although people with spinal cord injuries lose feeling in some erogenous zones, brain plasticity can heighten sensitivities in other unexpected places—it’s just about finding them. “I work with one man who gets off when his partner scratches his face,” she says. “For him, since he has no feeling below his neck, during sexual activity that feeling really intensifies.” Nipples, ear lobes, and even the roots of hair are all areas that can take on similar erogenous qualities and help someone reach orgasm.

***

As Stephanie Dixon got older, her insecurity about her body intensified. She was gaining prominence in the swimming community, but she had severe sexual anxiety. “I was devastated. I was a 23-year-old not having sex, then a 24-year-old not having sex, then a 25-year-old not having sex,” she says. “Disability magnifies the doubts anyone has in their minds, not only internally but in society. You don’t see women with disabilities in lingerie commercials.” Her best friend from university was from Whitehorse, and after Dixon retired from swimming three years ago, she decided to take a trip to the Yukon, which turned into a permanent move. A year after that, her mother died and she sought the services of a grief counsellor. But it turned out she didn’t need help with grief, she needed help with sex. “I didn’t want to be a 40-year-old woman not having sex because she’s insecure about her body,” Dixon, now 33, says. “One day I just walked in and said, we need to talk about sex. It was the first time I’d ever talked about it to anyone.”

Initially, the counsellor encouraged Dixon to get comfortable with masturbating. And then, she told her that she should start having sex—a lot of sex. Dixon began to date a guy she knew through friends in town, and they had sex three times, the most consecutive coitus she’d ever had. “That he wanted to do it again after the first time, that felt like a victory for me.” Even tougher than sex itself was getting comfortable with someone going down on her, something that got easier with practice. “My ass is definitely distorted, and because of the emphasis placed on that in sexual culture, I’d even put on clothes before walking to the bathroom.” Being on top of someone? No problem. But having a partner look at her butt was the hardest part.

Over the last three years, Dixon dated a string of men who have helped her work through some of her remaining insecurities and have taken her on some outstanding dates—to walk the Great Wall of China, to look at northern glaciers in a helicopter, to catch lake trout in Atlin, B.C., to surf in Tofino. And, just in January, she got to see, finally, what it feels like to be on the other side of the security equation on a date with a man who hadn’t had a new sexual partner in more than a decade. “We got into bed and he froze. ‘I don’t think I can do this. I’m so afraid I’m going to disappoint you. I don’t know if I remember all the moves’, he told me. We did end up having sex, and it was great.” He has no disability, but insecurity is mental, not physical. “It came full circle,” she says. “I got to validate somebody else.”

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.

Josée wants to discuss about ACSEXE+!

Our project manager, Josée, wrote her first blog post:

Last month, I was lucky enough to became project manager for ACSEXE. I spent the last month familiarizing myself with what has been done…a month to read, discuss, think … without succeeding in completely deciding on what to do so that ACSEXE shines more and is even more interesting for those interested by the project.

The project is important to me personally. I think of the teenage little Josée, who saw her friends having their first sexual experiences, and wondering if she would be able to have “normal” sex with her stiff legs and body. I think back to my early 20s, when I was on dating sites, with an invisible handicap in my pictures, tooking hours to think about when and how and why to tell about my difference before dating. I think of the Josée in her mid-twenties (and that’s not so long ago), who, after a sex life with the same partner for years, wondered how to communicate her differences and abilities with more ephemeral partners. And even more recently, the big Josée, who was wondering last week where to find, these partners open to a love story with a “different” person?

I feel like sharing all of this with you. But that’s my reality. And yours is different. You certainly have questions, solutions, things to say, ideas for the project …

ACSEXE, it’s not just me, it’s us.

You want to participate in the project and share your ideas, exchange, collaborate on this blog … I want to hear from you! Write me at jrochon@fqpn.qc.ca.

Josée

Gaelynn Lea talks about sexuality and love as a disabled woman in a TED talk

Sexuality and Disability: Forging Identity in a World that Leaves You Out 

In this TED Talk video, Gaelynn Lea talks about how she felt left out of mainstream dating and beauty culture due to her physical disability. She recounts the epiphany that empowered her to pursue life, love, and a musical career on her own terms.

 

How I Have Sex as a Quadriplegic

This article by Anna Breslaw was originally published on www.cosmopolitain.com on June 27th 2014.

Rachelle Friedman, author of The Promise: A Tragic Accident, a Paralyzed Bride, and the Power of Love, Loyalty, and Friendship, dispels misconceptions about the sex lives of disabled people and speaks frankly about her own.

It was the summer of 2010 and I was having a bachelorette party. I had been engaged for a year, and it was four weeks from my wedding. I’d met Chris in college; he was my first boyfriend. We got engaged right after graduation. We were staying at a friend’s house who lived in Virginia Beach. At night, my friends got me a limo like I had always wanted, and we went dancing. By 1 or 1:30 a.m., I was kinda over it, and wanted to chill by the pool. So we went home, I ran upstairs to put my suit on, and stood at the side of the pool. It was chilly, so I was hesitating, and my friend playfully came up behind me and pushed me into the pool. I went headfirst. Thank god I protected my head with my hands, but I went in at bad angle and broke my neck.

I immediately knew it was serious, even as I was on the side of the pool with the paramedics. People say it was shock but I knew how bad it was. Chris was camping with his dad three and a half hours away so when the accident happened we couldn’t get in touch with him at first; he didn’t know until the morning. I can’t imagine getting that phone call. He was scared and sad about what happened, mostly. I was in the ICU for 10 days and then I went to rehab for about 2 ½ months. I’m a C-6 quadriplegic.

Chris was by my side the whole time, no matter what. It wasn’t even a question. People are like, “It’s amazing that he stayed with you!” It’s like people think someone with a disability isn’t as deserving as someone who is able-bodied. As if he’s giving me a favor. That is so sad for them, because it goes to show that they have no idea what true love is.

Before the accident, we were very sexual as a couple. We click sexually very well. We had sex more than the average couple. He was actually my first; I lost my virginity to him in college. We just connected so perfectly — sex was something that always brought us closer together, and it was scary to think what our lives would be like sexually [after the accident]. The doctors don’t really talk about that stuff — you don’t know until you get into rehab. And even there, they don’t say anything unless you ask, which I did. Learning how to have sex all over again, in my opinion, is vital to the rehab process. I had a very awesome, open nurse who worked at the hospital I was at, and neither of us had any problems talking about sex. There was also a female quad who worked there who was 40 and who got hurt in her 20s, and she was very sexual and open, and I asked her a lot of questions.

[Chris and I] had sex for the first time after the accident when two months had passed, and it was kind of like losing my virginity again. We talked about it, we knew we would still be intimate, and we knew I wouldn’t be able to crawl around on the bed and climb on top of him — but from the sex ed that I sought out since I was openly talking to people [at rehab], there were plenty of positions I could do. I actually had sex for the first time in rehab, because they have a special room, like an apartment, that people go into by themselves, and it’s kind of like being at home again. The nurses only come when you ask them for help for something, because it’s hard to transition from a hospital bed to normal life again. So we had an apartment for the night and we decided to try to have sex.

It was different than it used to be, first of all, because I don’t exactly feel sexy. Before I got hurt, I was an aerobics instructor and I got myself as fit as I could. I was a girl. I wanted to look sexy. Now I couldn’t even shave my legs by myself, I was pale, and I had a neck brace on in the middle of summer. So it was hard to be in the moment, but at the same time, it was a revelation! It was awesome. I was like, “I’m gonna go home and take care of myself like I used to, and I wont always have this neck brace.”

I’m still trying to figure out the deal with orgasms. Basically, it’s hard to explain this, but some people have complete feeling down there when they have sex. I’m not one of them. I don’t feel below my chest, but when I’m having sex I can tell when he’s inside me — because my blood pressure raises a little bit, and your body changes in a lot of little ways. The vagus nerve is responsible for the pleasure signals from sex and it totally bypasses your spinal cord and goes straight to your brain. So that’s why I’m kind of able to tell when I’m having sex and still feel aroused. You get endorphins, you feel the same signals in your brain pleasure-wise, I get the messages. And most girls like to be kissed on their neck, but now it’s an ultra sensitive spot for me. It’s very intense.

Now: Do I hardcore climax? I haven’t gotten there yet. But I get to a very intense state of pleasure. And sometimes, other quads figure out how to get that, after years and years. But one positive difference, I would say, is that before the accident, it was always about having the orgasm. My mind really did kind of get set on getting there, and sometimes, looking back, I wasn’t always in the moment. And now I am. At this point, it’s about feeling all those pleasure zones as they happen, and not just waiting for the big climax.

Obviously, I want people to understand the truth. I’m not gonna say it’s so much better — I miss orgasms. It’s natural to want to have an orgasm. I’m never going to lie about it. But as far as positions go, it’s much easier to do missionary obviously with my legs — you’d hold them back, but what I do is kind of wrap my arms around my legs to make it easier. I can do it from the side, like being embraced, or on my stomach.

One reason I’m very upfront and overshare about this is because it’s such a misconception that people in wheelchairs can’t have sex or be sexy — and they’re just lying there, so how can that be sexy? But there’s a lot I can still do in the bedroom, and I still think our sex life is better than the average married couple’s.

The love story that wasn’t

This article by Nidhi Goyal was originally published on http://blog.sexualityanddisability.org on February 14th 2017.

I didn’t know that the simple act of cutting a cake for a New Year’s eve party would spark off a new chapter in my life, one that I would hate, love, enjoy, and later cherish. The party was at the house of a college friend of mine, and the cake had been brought by one of her colleagues.

When he realised that I couldn’t see, he started reading out the text on the cake. Some of his friends sniggered, and I sensed his anger at their implicit rudeness about my sight. He shut them up, and our conversations began.

This was nearly a decade ago, and yet it stands out as if it were yesterday. Within a month of meeting up with common friends, and over some cups of hot chocolate, he hinted at, explained and reiterated his attraction – or was it love? – for me. He found me brilliant, intelligent, beautiful, and loving; basically, he felt for me everything that a woman wants her partner to feel for her.

The first time he asked me out was over the phone at 1 am during one of our long conversations. I communicated my first refusal to him through silence. I just didn’t feel like there was enough chemistry between us. So we never dated or became lovers, but he was a friend who coloured my life with experiences that I still remember.

Some of my friends couldn’t understand why I wouldn’t give in to his attraction. After all, this was the first time in my life that a man had ever said that he was interested in me. They just didn’t get why I did not want to be with a so-called perfectly healthy, ‘normal’ man. Their reactions made me feel upset and confused.

I didn’t like talking to him in that way, nor did I feel any desire when I was with him. No matter how much he cared for me, the comfort of his friendship was not the same comfort I wanted from a partner. I didn’t confide in him or seek his support like I would a partner’s.

But wasn’t it better for me to compromise when someone was ready to ‘accept’ me? As a blind girl, did I really have a choice? Would anyone else ever like me again? These were the assumptions – both said and unsaid – that surrounded me. No matter what people said or implied, I guess my strong heart knew the answers.

I assume my refusal hurt him, but either he remained hopeful, or he just didn’t let it colour our friendship. He was happy to hang out with me, he argued with me as an equal, and he was my partner in crime when we sneaked out at midnight for pav bhaji. He didn’t treat me any differently when he discussed his work problems with me, he didn’t treat me any differently when he discussed his spiritual beliefs with me, and he certainly didn’t treat me any differently when I talked to him about my ambitions and plans for the future.

He was a natural at adapting to my disability; he never made it seem like it was a big deal. Once, when we were at a discotheque with friends, I was dancing with complete abandon. I am usually pretty much alone in the middle of the noisy space of a disco despite being with friends, since the visual coordination of steps isn’t possible. But I have a great set of friends who involve me in common dance steps through touch, and that night, so did he. But he also did something that the others had not picked up on – he squeezed my hand every ten minutes or so. I would say this is another way to make eye contact, simply to say ‘I am here.’

He was older, non-disabled, and had an MBA. He was working with an MNC while I was a struggling postgrad student, but he didn’t patronise or infantilise me – not that I would have let him. He liked to spend time with me, and to do different things with me, as he’d do with any other ‘normal’ friend.

One day, he said that he was tired of driving me around, and that it was my turn to drive. I thought he was joking until he pulled me out of my seat and pushed me onto the driver’s seat. Did he seriously want me to take charge of his car – his first love? Before I knew it, he was giving me instructions on the mechanics of driving, and I was following them. The experience of driving without sight, albeit on an empty and straight road, was exhilarating. I screamed with excitement and fear all the way through.

Our friendship grew and matured with time. Perhaps his love for me became intense. But as the days passed, contrary to what he’d assumed, it was clear that I didn’t want him as a partner. Something of his persistence must have shown at his home, because his mother was furious about our growing friendship.

He shared her displeasure with me, and instead of feeling hurt or uncomfortable, I was smiling with joy. This might have been cheesy of me, but this was the first ever time that the mother of a man thought that her son could fall for me, instead of just assuming that I was the angelic, genderless and harmless disabled best friend.

By then, his family had decided it was time for him to choose a life partner. Despite my refusal, he named me as the woman he wanted to be with. What followed was perhaps expected, and yet so painful that even though I didn’t love him, I was hurt. It hurt that his parents dismissed me because of my disability, even though they liked me, and I was otherwise whatever they wanted their daughter-in-law to be. But as far as they were concerned, the idea of him marrying me was absolutely out of the question because I was disabled. They didn’t want their son to be shackled with permanent caregiving responsibilities, because they assumed that I’d be a burden.

Their refusal didn’t matter, because I’d refused too, but what still shattered me as a 24-year-old woman were the reasons they gave for doing so. I had always been aware of the stigma surrounding marriage and disability, but this time it was my reality, and this reality was clawing at my skin.

Perhaps what hurt the most was that he didn’t persist in his efforts to be with me. He persisted when I said no, but not when his parents made unfair assumptions about me. This made me wonder just how equally he really treated me in the end.

Seven years have passed since this incident, and we are still in touch. Over cups of hot chocolate, we still remember those days, sometimes with fondness, and sometimes with discomfort. But we both know now that we would never have made sense together. My initial assessment of my feelings was right, and thank god I wasn’t consumed by any pressure to be with him.

As for him, after seeing me grow up into the stronger woman that I am today, he is sure that we wouldn’t have been compatible with each other. But it is hard for me to forget my first lesson in rejection, not because the man in question didn’t like me, but because assumptions about my disability superseded everything else.