The Reveal Narrative

I love when I see sex and disability talked about in the media landscape.  Almost all of my professional persona and my job is built on putting these stories out there.   I am hungry to see this stuff – this type of representation is so, so important, and often so lacking.  Every disabled person can almost guarantee that we won’t see ourselves represented unless we choose to be represented in very particular and often damaging ways.

Let me be very clear – I am a fame whore of epic proportions (you all know it’s the truth) and I will take whatever media attention I can, with the express purpose of championing my cause and the work I do, so that those after me have a guide post.   That is my ultimate goal, and I will do what I have to do to achieve that.  But, if I am really honest with you, there is a narrative around disability and sexuality as it is portrayed in the media that is starting to get, well, tired… overdone and overdrawn.  In fact, it is one of the only depictions of disability and sex that is readily available: The Reveal Narrative.

I was scrolling through social media tonight and I saw an article pop up on my Twitter feed that said, “5 People with Disabilities Reveal What Dating is Actually Like”.   The article itself was full of important information centered around the lived experience of dating while disabled.  I felt that this was the meat of the piece, and what the reader should be focused on.   But the idea of “The Reveal Narrative” stayed with me, and has irked me – even as I write this.  

A quick Google Search of past articles on sex and disability highlight that the reveal narrative is alive and well.   I found 9 articles that use the word “reveal” in the title to lead into a sensationalistic discussion of sex and disability.   Other articles used titles like, “What it’s Really Like to Have Sex and Disability”.   I even wrote a piece a few years back, where the editor changed the title to better fit “The Reveal Narrative”.

I find The Reveal Narrative destructive for all the reasons you might expect – its subversively ableist undertones remind us that sex and disability is still shocking and taboo.  It underpins the fact that we, as disabled people, are to be gawked at, and that our sex and sexuality is so secretive and different in scope and practice – that whenever we even deign to talk about it, in any context whatsoever, it must be uncovered or discovered, as if it’s this thing that is shrouded in secrecy.   The magazines and media outlets jump on this salacious and incendiary fact so that they can sell stories, but the embers of that flame, I think, burn people with disabilities in other ways, too.

Thanks to the idea of revealing/uncovering/surprising people with the idea of sex and disability, I have come to use that narrative in how I approach others.  There have been moments where I have seen my sex as overtly taboo or “special” in some way.  I have used disabled sex as some fabled currency to entice a lover over.     I have played with the ideas of sex and disability as being the “sex you never knew you wanted” or quipped that I’d show a guy just how good sex and disability could be.  I’ve joked with guys that I want to be their first cripple, in essence revealing to them the “truth of sex and disability” (whatever the hell that is).  That’s a whole lot of fucking pressure to live up to.   What if it is revealed that I’m bad at it?  What if you discovered that I just want to cuddle?  What might happen then?  

I’d love to see news stories and magazines that are willing to talk about sex and disability, do so in a way that is a little different.   Let the stories inside, told be the people who lived them, speak for themselves.  Those are the narratives that are the most critical and vital in changing the way we look at sex and disability.   If everything we do, see and read about disabled sex/dating is revelatory, how will it ever become mainstream?  How will I ever see myself as anything more than your novelty date, your first queer cripple or the first time you were with a guy in a chair?   Let me be real a minute.   Unlike the media suggests, when you hang out, date or get naked with me, the only big reveal will be that I am awkward, nervous, and fucked up.  Not too surprising, is it?    

In Cripness And In Health – Sexy, Seated and Sick

There’s this thing that happens to you when you’ve lived with your disability your whole life.   You learn to adapt to pretty much everything that is thrown at you.  I don’t mean adapt in that clichéd way people talk about overcoming illness.  I mean, that as a disabled person your body, your being and your spirit make room for your disability, and it becomes a part of you.  You learn the difference between disability pain – the kind of pain that comes with muscle spasms, contractures, being moved the wrong way, being scared by loud noises…the list could go on forever – and real pain, the kind that stops you in your tracks and makes you take notice that something might be really, really wrong here.

A couple weeks ago, I experienced some of that real pain for the first time in a few years.   I wasn’t able to pee for two days with no real reason why.   I was scared and I didn’t really know what to do.  I eventually ended up deciding to go into hospital, which as a disabled person comes with its own particular brand of discomfort.   After all the initial workups, and doctors probing to understand my disability without really understanding anything at all, it was decided that they would put a catheter in my bladder.   I’ll save you the unpleasant details surrounding that procedure, but when all was said and done, I had a tube coming out of my junk.   Sexy as fuck, right?  

As I laid there in the hallway of the hustling emergency department on the most uncomfortable gurney ever, I was sure that the doctors would come back with some definitive answer for me as to what was happening.    Some hours passed and the doctors finally came to me bedside.   The doctor looked at my chart and back at me.  “So, we’re not really sure what’s going on.  It might just be related to your disability.”  The rest of what he was saying didn’t register to me at all.   You know in the movies where the protagonist gets a really scary test result back and they zone out?  I did that a little, but it wasn’t because I was necessarily scared of what he was saying to me.   He was talking about catheterization, but I wasn’t thinking about that.   The words that I had become most focused in on were, “it might just be your disability.”   He said it so matter-of-factly and without any real concern, as if this should simply be expected because I had Cerebral Palsy.     

My brain started firing all these horrible thoughts.  I was picturing that this would be my life now…tubes and catheters.   I should stress again that I wasn’t necessarily scared for myself in this instance.  None of this stuff worried me – the medical side of it anyhow.  What scares me is that if this thing doesn’t resolve itself, I wondered how others might perceive me?   Lovers?  Dates?   I have worked my ass off branding and incorporating my disability as it stands in my life, to make it something worth learning about, worth understanding.   Could I be sick and disabled?   Who would sign up for that?   Who would stay or want to stay?   Who’d fuck a chronic cripple?   

It has been interesting that since this happened – all of these insecurities about my ability, my sexuality and my overall attractiveness have presented themselves all over again.  I find myself worrying about it as if I were 17 all over again.   This has kept me up at night more than anything else.  The doctors could tell me that I need a penile transplant, and that probably wouldn’t faze me as much as the thought of never having a partner in the hospital with me.  Willing to stay with me, and to experience it – whatever it happens to be.   I’ve had nightmares where the most attractive guy fucks me in a Grey’s Anatomy style hospital moment only to leave and never come back after seeing my tubed penis.  I have enough issues feeling fuckable as a Queer Cripple and now this?  The fear of adding more to the pile of things I have reclaimed as mine makes me a little nervous.   How do I make a cathed crip cock sexy?   I guess I could find a guy who was into sounding.  

My point is, I guess, that these things that are done to us – the disabled – these things that are “just a part of the disability” are never really understood from an emotional level.   I am scared about adapting to a new type of rejection, a new guy telling me “no” all over again. I’m not ready for yet another time that a guy bolted out of my place because he didn’t know what to expect or what to do with me.    Those moments are what scare me the most as I wade on through the disability experience as a Queer Cripple. And – if I’m honest – the realest pain about all these potential changes, is knowing that I’ll adapt and accept them as I always have, but I’ll never know, truly know, if someone else will too.

Why We Need to talk about Queerness, Disability and Depression

I remember when I turned 29, I had just gone through a couple major life changes.  I had recovered from a hellish few months of hospitals, complications and issues as part of my disability, and gallbladder disease.  I moved from my college town to be closer to my family, leaving ten years of academia behind me with no job, and no prospects.   I hadn’t yet started my work as a Disability Awareness Consultant.   I was disabled, depressed, and I felt so alone.  I had no one to really talk to about what it was I was feeling -- what it was I was going through.

I would have days where I would do absolutely nothing; laze around the house and watch Netflix, talk to nobody and wallow, and I’d have days where I would just cry uncontrollably for no reason whatsoever.   I kept telling myself that nothing was wrong - that I would be okay - and pull through.  I kept forcing myself not to be depressed.   People couldn’t see me upset; as a disabled man they expected that reaction from me already.   I had to put on a smile and power through.  

For a long while, that’s just what I did.  I took a deep breath, got up every single day, got in my wheelchair and moved on with my life.  Let me make clear before I go any further, these feelings I was having had everything to do with my relationship to my disability, and they DID NOT have anything to do with the fact that I am disabled.   I came to terms with my disabled reality when I was 6 years old, and the physiotherapist handed me a toy car license for my chair.  It was one of those moments that you just inextricably understand as final, as real.   I got it.  Right in that moment.   So, no, I was never an angry person over my being in a wheelchair.  The anger came when I started trying to share that reality with others who were too stricken with a disease called ableism to see what I was offering.

These feelings were there the first time I met a boy I liked, and wanted to ask him out, and he nervously said that he couldn’t.  I remember that the first couple times I got these reactions after putting myself out there.  I shuffled them off as we’re taught to do.  My friends told me that this is what happens, that it was “normal”.  For awhile, I believed them.  The more and more stuff happened though, I knew it wasn’t okay anymore.  

I was tired of having people ghost me online. Cancel on me last minute.  Promise to hang out and not ever follow-through. Fuck me, and then never see me again, making me feel horrible about my body, my disability, and myself.   I had gone through years of this self-imposed torture, trying to make my mark somewhere, trying to connect with someone and show them who I was.   
 

So, a week after my 29th birthday, there I sat in the therapist’s office.  I watched her furiously writing everything I was telling her.  I didn’t even know where to start.  I wanted to shout, scream and deconstruct every time a guy had been rude to me over my chair, every time I had fallen in love with the thought of a guy, only to know deep down that he would never go for a guy like me.  I wanted to tell the therapist that I used sex as a tool for connection, and all that I wanted was intimacy.  I told her all that, and SO MUCH more.  I laid it all out.  Every single time that I had encountered ableism as a queer cripple, every single time I was left to pick up the pieces of my own heart.    After all that, she put her pen down and looked me in the eyes.   Okay, this is it.  She’s going to help me here. (Full disclosure, I never expected her to fix things in our first session, but what she said in that moment was extremely telling.)    She looked at me and said, “Oh. I never thought of it like that.”   I was confused.   What did she mean?  I pressed her for an answer, some context.   She continued, “I never considered all of the things you bring up with respect to disability.”   

I understood where she was coming from, not being disabled, but I was angry now.  I had come for help.  For some level of guidance.  I told her things that I had kept inside for a very long time, told no one.  I learned very quickly that this space, one designed to help people work through their shit, was ableist too.   Over the next few months, I taught her about my experiences as a queer cripple, and each time she would be stunned by her own ignorance.   

She would advise me to go to events, and try to meet people.   I tried that, and each time I would be met with some level of ableism; a rude comment, inaccessible spaces, etc., and again when I would tell her, she would have no concrete solution for me.  

We need to start talking about the very real effects of ableism, ignorance and prejudice levied against the queer crippled community.   This is a type of depression that cuts deep and long across our communities.   It happens constantly.   It makes us feel unworthy, disenchanted and unimportant.   

When I was a young disabled kid, I was told by everyone around me to speak up for myself, and to go after what I want.  I learned that I had to do this, to be seen and be heard; to be taken seriously as a disabled person, I had to be obtuse about it.   I had tried to apply this same principle of directness to dating dudes while disabled.   I was dismayed to learn, almost every time, that asking for what I wanted, standing up for myself as a young queer cripple, didn’t work in this arena.    I was knocked down by ableism time and time again.   Each time, the guy couching his ableist rhetoric in “unawareness” and “honesty”. They would tell me that they were telling me the truth, and being real with me about how my disability affected them.  They’d say this in easy tones, as if I should be thankful to them for hurting me.  They could care less about how their words affected me, leaving a scar bigger than the last.

This kind of subversive ableism that runs rampant in our community is not okay.   It is dangerous and divisive.  Moreover, the disabled individual dealing with this has nowhere to turn.  No one to talk to.   Our friends, no matter how kind or empathetic, “just don’t get it”, and therapists are ineffectual, and altogether financially inaccessible to the queer cripple.  C’mon, would you want to pay $150 an hour to have the person charged with helping you, tell you that they never even thought of how things might affect people in your circumstance?  Yeah, didn’t think so.

We need to talk to queer communities and remind them that their honesty about disability is actually ableism, and that pretending like you just didn’t know any better, no longer gets a pass.  At least not in my book.   We need to create spaces for the queer cripple to share their stories and be validated.    We need to create spaces where the queer cripple can feel safe to breakdown, a place where they can put down their armor and simply let go.   

We need to realize that disability and queerness make depression look different.  We handle it differently.  We feel it differently.   The intersectionality and linkages between queerness, disability and depression are complex.  But they are there.  We have a responsibility to give them space, educate ourselves on what they are, and where they are, and where they came from.  We need to show they queer cripple they are not alone, and that for once, we have thought about them.  

5 Reasons why Going on a Date with that Disabled Dude will be totally worth it

A few months ago, a young man who read one of my posts on dating and disability started chatting with me via social media.   Like myself, he has Cerebral Palsy and is Queer (sidebar: whenever Queer Crips find each other it’s pretty amaze balls, because we’re out there, but we very rarely connect with one another).   He told me that my writing was like he was reading his life on the page.  I am of course, extremely humbled that my few words could have such an impact on my fellow Queer Crips.   As we continued talking, he said something that touched me in a way that almost two months later, I can’t shake.  

He told me in no uncertain terms, that not once had anyone ever told him that he was sexy.   As a result of this, he hated his disability and all that it had essentially ‘robbed’ him of.   As cripples of every colour and creed – we’ve all had days where we be like, “For serious?  If I could just walk, I’d score me some c**k”.  

The more I thought about what he said and its effects, I thought people probably just don’t realize how fucking awesome we disabled dudes (I was gonna type dudettes here, but this is not a 1987 episode of Full House; to my Gimpy Gals, I love you too) are.

Time someone tells them, right? 

Also, in doing research for this piece (note: despite my academic credentials, by ‘research’ I mean Googling the term ‘disabled dating – super profesh, right?) I found that the main question being posed was

Would you/could you date someone with a disability? 

 

The major problem with how this question is presented is this: automatically the question suggests that there is some sort of risk in dating a disabled person (ummmm, isn’t there a risk in dating ANYONE?).   The phrasing of the question accesses one’s fear around disability above all else.   While it is okay to be apprehensive (being around so much awesome all at once can be overwhelming), the question should in fact be the statement:

“You SHOULD Date someone with a Disability!”

 

Well, of course you should.  We are no better or worse than other options (true fact though, I AM BETTER).  That said, I want to review some reasons that make a date with a cripple really amazeballs:

1.   Looking for Something Different:

I’m pretty sure that every T-Swifty song ever, is based on her desire to find something new, exciting and different.  If you scroll on through any internet dating website, what do you see: “Looking for a guy not like the rest”.   Lastly, I’m sure that the gals on Girls bemoan their quest for different dudes (aside from the fact that program makes apathy oddly amazing) each and every week.

Well, if different is what you want crips got you covered.  What could be more different than your date rolling in the bar through the backdoor in their tricked out 300 lbs. chariot?  Don’t lie, as you watch them coming towards you commanding their chair with confidence – you can’t help but getting a tingle in your nether regions.    Jokes aside, cripples have a different appreciation for the world; we can offer you a different perspective than all those wannabe frat/sorority girls or “young professionals” (can we review this term please – it’s business speak for douche, right?) ever could.

2.   Crip Humour:

On the handful of dates I have been on, people have told me that I have a sick, yet hilarious sense of humour.  I call myself a cripple pretty openly and make fun of the hilariously honest things that happen as a result of my disability… This won’t be the case for all of us, but I think once you see how deliciously dirty disability can in fact be, you’ll be glad you said yes to that “cripple coffee”.

3.   Friendtendant Freebies:

For the record, “friendtendant” is a combo of friend + attendant that occurs when your friends help you out with crip stuff.   It has happened a few times now where people will blindly assume that my dates are my caregivers.   (Before all my fellow crips reading this go up in arms about how someone might use me because of this, not to worry.  Dates: if you want to date me simply to get a free movie, we have other things we prob should discuss.)  In these instances, we have received free movie tickets, meals, etc.   Go ahead.  I’ll totes pretend that you are my caregiver!  When has free shit EVER been turned down? 

4.    Cripple Connection:

It goes without saying that the majority of people are simply unaware to some of the things that we crips have to contend with.  One of the benefits about going on a crip-tastical adventure date with us is that you will see this firsthand.    You wanna go to that hip new karaoke bar, but it isn’t noticeably accessible… fear not, let’s fight through the throngs of drunken college kids (who by day are “young professionals”) belting out the words to Don’t Stop Believing so that we can get in the club and duet the shit out of some 80s pop.     My point being that you will begin to understand my reality that much better, and see that I can still party, it just takes a wee bit more planning.

5.   We’re All Bad at this Shizz:  

The most important thing you will learn on our date is this: while you may be sitting there trying to mind your P’s and Q’s as to what is PC with respect to my CP, what you should know is that I also haven’t a clue what I am doing, and may also be really shit at this dating thing.  True fact: I have no clue what the f**k I am doing!

So, there you have it.   Ask me out for that coffee, the worst that could happen is that I would have a spasm and accidentally throw it in your face, just before we go into our free movie.   After you wipe the whipped mocha out your eyes they could be open to a whole new possibility.  Not too shabby, eh?

Functionality or Fucktionality: Why Sexual Function needs to be considered in Occupational and Physical Therapies for Disabled People

Ever since I was 6 years old, I have been working with physical and occupational therapists.   I never really liked it when they came around, as they would make me do exercises that strengthened my abilities, but took me away from my friends and playtime.  

Ugh. 

As I got older and began to understand how important they were in my life, I did my best to do the work so that, as they put it, I could “normally complete the activities of daily living.”    I had learned that I could open doors, hold a fork, and do other tasks to assist in my daily life.   Everybody seemed very pleased that I was gaining my independence in this way, and as a wheelchair user with “severely sexy” disabilities resulting from Cerebral Palsy, I was happy that I had the freedom to do some things myself… except fucking.

I was with a new lover one night, and we were engaged in a pretty hot session.  Amid the moans of agreement and pleasure, my lover yelled out: “Put it in me and thrust it deep!”   I paused (froze in terror is a more accurate description).   I wanted to oblige him, and I definitely wanted to fuck him.   I told him to guide me in (read: put me inside himself, because my spastic body couldn’t).   Once inside, he looked at me expectantly, waiting for something to happen.   I tried as hard as I could to thrust myself into him; I used all my spasticity in an attempt to propel my cock forward, while maintaining a sexy, satisfied composure.   Okay, if anybody had been watching or filming this scene, it would have looked ridiculous and impossible to replicate.   There we were; me beneath him, grunting and flailing about trying desperately to do him, while he looked down at me with the unmistakable disappointment on his face wherein he understood that I was “actually disabled.”   I remember that even though we finished playing, he wasn’t happy with the outcome by any means, and neither was I.  

At my next Occupational Therapy appointment, I was meeting a new therapist that I was slated to be working with.   I was kind of excited this time around because she was young, and I felt as though maybe I could be honest with her about what I really wanted help with.   We went through the typical roster of questions about my disability, my function, my abilities, and finally we came to the question about what I wanted from our time together.  What were my goals?  As she asked this, there was a glint in my eye – I had to go for it.   I told her that I wanted to gain functionality in one very specific area: I wanted to learn how I could, as a disabled man, thrust.   I was about as frank as I could be with her, so that there was no confusion as to what I was after.   Her face went beet red and I could tell that this was entirely out of her wheelhouse.     She admitted that she had never been asked this before, and didn’t know if there were any resources available for me.  Our session ended quickly, and I never brought it up with her again.   I felt as though my sexuality had been denied, and I had no place to turn.

Experiences such as this happen to the disabled community on a daily basis.  The systems that we rely on the most to thrive and function in society; the people who first begin to show us how our bodies actually work and what they are indeed capable of, fail to see as full, vibrant beings.   They, like so many others don’t consider that for us to be fully functional, we may want to learn how to fuck, felate or fist our partners as the sexy, seated sensual lovers that we are.

It is really unfortunate that the sexual education for the disabled community (if there is any offered at all) doesn’t even explain how sexuality and disability are intertwined within each other.  There is no guidebook or seminar on how a wheelchair user engages with their own body or others, or what going through puberty as a Queer Cripple is like. The sexual health component that talks about disability begins and ends with the risks associated if we engage in sexuality as members of a vulnerable population.   As we all know, there are so many more layers to it than that.

We need to start engaging with the Occupational Therapists and Physical Therapists to give them the tools to educate the disabled community on how their bodies work in the bedroom.   We ought to have seminars, videos, books and classes that prepare all up and coming therapists (who have been bludgeoned by the medical model of disability) that prepare them for what living with a disability is actually like in and out of the bedroom.  Trust me, it would have been super helpful when I started fucking other people to know what my actual abilities were, rather than to find out by consistently feeling ashamed and unworthy in the moment itself.    I would have had so much more sexual confidence if my Occupational and Physical Therapy team opened up the possibilities for me as a disabled man.

I want all Occupational and Physical Therapists, as well as soon to be students to know one thing: I am very happy that because of you I learned to hold a spoon all by myself when I was younger.  Now that I am a sort of well adjusted Queer Cripple adultish, I’d like to learn how to position myself to spoon with someone, and I’d like to be able to ask you about it.  My “fucktionality” should be just as important as my functionality.