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.

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.

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

How able-bodied folks can make disabled partner comfortable sex

Article by Nick Moreno published on Wear Your Voice Mag on Jan 25, 2016.

“So how do you… do it?

When it comes to sex, people with disabilities are often times viewed as sexless, not worthy of sexual desire, fetishized and often stripped of our bodily agency.

So how does this all work? Well, it’s a case-by-case basis. Communication is key here. It’s more than just asking what your partner (for the night or, however, long) likes. It’s about setting up a dialogue to make sure you’re both on the same page. Ask us what accommodations we may need.

Accommodations can be anything from pillows, or foam wedges to prop up our legs/bodies (because not all of us can move and hold ourselves into positions that most able-bodied people can get into), to having breaks, taking pain medication, or using safe words, physical cues – like hand gestures – to let your partner know what you need and how they can help at getting you more relaxed. For folks who experience paralysis, ask them how they can be accommodated physically and emotionally. This will vary person to person, so be sure to check in on how you can help. If you’re planning BDSM scenes, be sure to go over safe words, gestures, or positioning materials you might need. Be sure not to overlook anything, this way you’ll be able to have fun and not worry about forgetting anything along the way.

Having sex when you’re disabled can be tricky sometimes. It’s important to trust when we say what we want. Some folks with disabilities are kinksters, some are vanilla, some are queer/trans- we’re all different. Ask what we like. Understand that for some of us, it can be quite difficult to share our bodies with another person. Some of us are insecure about our scars or deformities, but this isn’t true for all of us. Many of us love our bodies and some of us are still learning to love our bodies the way they are

Don’t give into the notion that we don’t like sex or that we don’t have or want sex. Question why this notion exists in the first place. It does so because of ableism and the stigma that people with disabilities are useless and incapable in all facets of life. It’s time that able-bodied people unlearn this and stop using folks with disabilities to satisfy their fetishes.

Once you know how to accommodate your partner have fun! Be honored that they chose to be this raw and vulnerable with you.

Foreplay will work differently for everyone. As with able-bodied folks, focus on the things that arouse you both, say the things they love — all within the person’s boundaries of course. Even during sex, briefly, check in from time to time. It can even be something as simple as “do you like that?”

While it’s great for you to be helpful, be sure not to treat us like we’re completely helpless. Many of us are more self-sufficient than you might think. Take extra care to stay away from words or phrases that are fetishizing, tokenizing, or ableist. This means phrases like “I’ve never been with someone who’s disabled before.” “So do you have sex like normal people?” Steer away from intrusive questions about specific medical history especially if you’re just hooking up. If a person with disabilities wants to share something from their medical history, they will unveil that to you on their own time, at their own accord! There’s no need to draw that out of them. Let us be in charge of our own narratives, and we’ll tell you if we’re comfortable with doing so; and if not — that’s okay too.

All in all, communication is key. Some of us like to have sex hard and dirty, other love a softer approach. Know and fully understand what accommodations we need. We can enjoy sex just as much as able-bodied people.

So an Aspie Has A Crush on You: A Guide on Guys with Asperger’s (Written by One)

Extract of an article originally published by Cole Wintringham, who has Asperger, on www.medium.com, on Feb. 4th 2017.

The Card or Don’t Touch

I am too old-fashioned when it comes to holidays. I insist to this day a handmade card beats a Hallmark card any day; someday I may read this back to my future wife, who will know exactly what I mean. I’d even make a paper box for the engagement ring if I could make it sentimental enough, provided I could physically do that.

It was not actually a Valentine’s Day Card, which is ironic in hindsight. It actually just said thank you for being a friend. The Card actually burned too many friendships to count, oh well. There is always a particular girl, I think it’s the way my brain works; I can’t figure out why. There was M., S., and T., I am actually sad there was no R. or Y., I could’ve spelled out M.S.R.Y.; note to self. T. was literally the last one, whether there is a girl right now is a stupid question. I need stability before that so no. I need some vowels too…

Back on topic, I gave T. this ‘Friendship Card’ on February 14th, 2016. She appreciated it, and made the single greatest mistake she could have made, she hugged me. Ladies, if you have a friend with Asperger’s do not hug him on Valentine’s Day. For an Aspie a hug may as well kiss, so don’t, unless you really mean it then go ahead, don’t say I never warned you. That is Rule One. ESPECIALLY if you have a boyfriend, or even worse haven’t bothered telling your Aspie friend you do.

Cole’s Aspie Rulebook:
Rule #1. Don’t hug us unless you’d kiss us; a handshake will suffice

I can’t remember which day I “traumatized” her, not that it matters now. T. and her boyfriend L. are long gone from the school which I returned to this September, on an absolute whim. However I have no hard feelings, they never had a chance to read something like this.

Please, Don’t Make Us Guess

As I hinted before, T. wasn’t necessarily portraying herself the way she thought. I’m sure light-hearted flirting is common but it’s not the best thing to do towards a guy like me. Let’s change context, say you take your six year-old to a wrestling match, he get’s worried because he thinks the guy is actually getting beaten to a pulp. Of course you tell him it’s “not real”, but how was he supposed to know that. Same thing here, I have a hard enough time reading body language, let alone judging intent.

As an extension of this don’t leave us out of the loop if you think you might hurt us by telling us the truth. As hard as it is we function better when we know what is what. Because I don’t process things the way you do I need to pre-load them. It’s kind of like how you download music to your phone if you want to play it the car. T., bless her heart, thought I’d be devastated if she told me she was with L.; looking back a year later, I appreciate the thought. However it was more harmful to hide it than to be open, because of the pre-loading.

You don’t tell somebody with asperger’s at 11:23 am that they have a noon appointment. WE PANIC. Well now I have to get dressed, but I haven’t showered, did I brush my teeth etc. Telling us the truth, ladies, is like deploying airbags. Airbags don’t actually reduce the force of a collision they dampen and absorb the kinetic energy. Sure airbags hurt as hell, but I’d rather break my nose on an airbag than smash my face on a dashboard. Rules Two and Three.

Cole’s Aspie Rulebook:
Rule #2. Don’t leave us to judge body language, we can’t
Rule #3. Be honest, if we know something we can deal with it

If You Have Concerns, Tell Us

Let’s go back to the dictionary and look at a particular passage:

repetitive patterns of behaviour

This would have helped T. tremondously had she known it was simply a symptom. She became concerned about the frequency I would message her on Facebook; and to be fair she was right. However what she did wrong was, again, failing to tell me for fear of upsetting me. If she had told me I would have listened to her, adjusted my habits accordingly. This is a recurring thing with Aspie’s, we will never know unless you tell us.

This is where we get to learning, somebody like me can never learn without feedback. Imagine a you are proofreading a novel, you note all the mistakes but you don’t tell the author. That doesn’t exactly work, does it? An author sometimes doesn’t even know he made a mistake. An Aspie doesn’t know when we make a mistake, we don’t know how you expect us to behave.

As a friend it is not mean to “correct” our behaviour, we won’t be mad. You’re actually helping us, we learn through trial and error because we don’t have the same social instincts a normal person has. Rule 4.

Cole’s Aspie Rulebook:
Rule #4. If we behave unexpectedly, tell us, we need feedback

Compliments & Boundaries

Our last section today is more verbal communications. Those of us with Asperger’s take things literally. I remember countless times when T. and even S. called me “sweet”. It is because I am nice, but I read too far into it. Yes I am telling you to friendzone him, but for a specific reason. Define the field of play, tell us where we can and cannot go. We are very, very good with black and white rules, but if it’s grey you may as well drop us in a forest with no compass.

Compliments must be specific, don’t just say we are “sweet”, how are we “sweet”. Don’t leave it implied, we do not understand that. What would I have had T. say, instead of “Cole, you are sweet” it should have been “Cole, I appreciate how thoughtful you are”. That way I could sort it into the “Platonic Friendship” bin. Our brain is like a library with a dyslexic librarian, you don’t want us sorting the books. Rule 5.

Boundaries or rules are essential, because that is how we view the world. If you watch you friend walk outside I guarantee you he stays on the sidewalk and avoids cracks, as we are told as toddlers. So tell us what you expect. Again using T. as an example what would have helped me? For example “Cole, if I don’t respond you don’t need to send another message” or “Cole if I can’t make lunch it is because something came up”. Rule 6.

Cole’s Aspie Rulebook:
Rule #5. Be specific with compliments, so we know what you mean
Rule #6. Lay out boundaries, if you define them we will follow them

Couple with Asperger’s syndrome: ‘We’re even more extraordinary together’

This video and this article were originally published on www.cnn.com on Feb. 24th 2017.

Story highlights

  • Nico Morales and Latoya Jolly met online in December 2015
  • They found each other using a dating website for people on the autism spectrum
  • Most high-functioning people with autism want to be in a romantic relationship, one study found

Like many couples, Nico Morales and Latoya Jolly met online. Nico sent the first message while on vacation in Guatemala with his family in December 2015. Latoya’s handle was pokejolly1993, a throwback to Pokemon and her birth year. Nico liked that they were both “children at heart.” Soon after, the couple went on their first date.

Now, family and friends say, it’s hard to keep them apart.
Morales and Jolly found each other using a lesser-known dating website called AutisticDating.net. Both Morales, 19, and Jolly, 23, have Asperger’s syndrome, a high-functioning form of autism characterized by average, or above average, intelligence and a difficulty socializing and communicating with others. Depending upon the severity of these social deficits, people with Asperger’s and other forms of autism may struggle to develop, maintain and understand relationships, including romantic ones.
“Social awkwardness is very common amongst autistic people,” Morales said. “And if you thought that was difficult for friendships, imagine applying that to romantic relationships.”
An estimated one in 68 children in the US has some form of autism spectrum disorder, according to a 2012 study conducted by the Centers for Disease Control and Prevention. Children can fall anywhere along the spectrum, which represents varying degrees of difficulty with social interaction, communication and repetitive behaviors. Researchers do not fully understand what causes these neurodevelopmental disorders, and there is no pharmaceutical treatment or cure.
Most high-functioning people with autism want to be in a romantic relationship, according to a 2016 study in the Journal of Clinical Psychology. Of the 229 participants with high-functioning autism, 73% said they had been in a romantic relationship before, and only 7% said they had no interest in a romantic relationship whatsoever. Additionally, the participants with partners who were also on the autism spectrum reported a significantly higher level of satisfaction with their relationship than those whose partners were not on the spectrum.
One of the primary characteristics of autism is a fixation on particular hobbies or pastimes — what the American Academy of Pediatrics calls “restrictive and repetitive interests and activities.” When two individuals with autism are in a relationship, they can relate to one another based on those interests, said Paige M. Siper, chief psychologist at the Seaver Autism Center for Research and Treatment.
“They can kind of connect on that common ground,” she said. “And sometimes, it’s around these areas of preoccupation.”
Jolly attends Atlantic Technical College in Coconut Creek, FL. Jolly says she is often uncomfortable when she talks to people who are not autistic. They may not understand the nature of her condition — why she may avoid eye contact during a conversation, for example. But with Morales, she doesn’t have that issue.
“It’s easy to talk to him,” she said. “I can understand, like, what he goes through and stuff. Because I went through the same thing, too.”
Morales, who attends Broward College in Fort Lauderdale, FL, says Jolly helps him deal with the emotional ups and downs common to individuals with autism.
“I honestly don’t know what I did to deserve such an amazing woman like Latoya in my life,” he said. “But who am I to question a good thing?”

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.