Touch Me: How the Experience of Touch Affects Persons with Disabilities

As I am lying there naked in bed, my mind has drifted off elsewhere.  I am dreaming of beaches, boys and bodies – anything to take my mind off of what is actually happening.   As they touch me, I am forced to disconnect.  I have no other option but to mentally remove myself.  These moments are weird and awkward to say the least.    All I want to do is scream, “PLEASE DON’T TOUCH ME RIGHT NOW!” but, if I want to get out of my bed, I had best quiet that voice in my head.  Resistance is futile.

Touch is, without question, the most intimate and personal act that we can bestow on another person.  It connects us to those that we love, to those who we care for; it reminds us that we are part of the human experience.  We like to think that the concept of touch is wholly ours.  We decide whom we touch and who touches us, right?

In your life as a sexy but seated individual, who needs help with all the little things, the idea of someone else touching you in these moments, at first becomes like second nature to you.   You simply understand and accept that you require assistance, and that’s all this is – nothing more.  Typically, as a young child with a disability, the first person to touch you in this way is a parent.   This makes the entire act of “touch” safe, comfortable, and okay.   There is an inherent understanding that they are helping you because they care about you and your well-being.

As you get older though, and move through systems filled with different attendants and care providers, the idea of touch can take a different form altogether.  Sooner than you realize, the concept of touch has become transactional.  There is no longer a sense of care in these actions – you are simply a job to be completed.     Imagine it: your most intimate parts of yourself being touched each and everyday, without true feeling or compassion.   I should preface this by saying that, I understand the attendant is only doing their job, and while that is okay, the way we are touched as People with Disabilities affects how we see, feel and interact with the world around us, and I want to highlight some of these feelings if I may.     

Transactional touching has greatly impacted how I understand the world around me.   Whenever I see couples hugging or sharing an intimate moment of affection with one another, I often wonder what that feels like.  I am curious what the sensation of touch feels like when it is not required or demanded of in the moment to get something done.  “What do you mean, you want to touch me just because… WHAT?!”  Mind. Blown.

If I am being perfectly honest, transactional touch has made me think of my body differently.   You begin to see yourself as an object, and it can be difficult to even touch yourself in a way that conveys affection and intimacy.  There have been many moments where I asked myself, “Why am I doing this?  What’s the point? Why is this sensation important? Does it even matter?”  Condoms catheters and consumer care plans take precedence over caresses.

Moreover, transactional touch has scared me to really touch others.  I remember a couple times recently wherein I have wanted to show affection to someone with a pat on the back or a quick hug, and I thought about the perfunctory purpose, rather than simply doing it because that is what I felt at the time.

Transactional touch has also played a great part in my physical intimacy with others.  In fact, I would say that there is one undeniable upside to be touched in this way as a Person with a Disability:  It has made me one of the most attentive lovers ever.   I understand the importance of touch more than anyone, and the experience of disability has helped me to hone that.   Think about the last time you hooked up with someone.  Surely you touched them… but did you truly touch them?    Did you understand what the touch meant rather than just focusing on the end goal?    Did your touch cause a twinge in the far reaches of their soul, because you understand the anguish and fear of not knowing if you’d ever really feel that?

Transactional touch has frustrated and infuriated me.  It has made me feel downplayed as a dude.   It has terrified me into believing that this is all I am worth.  Nothing more.     Even so, as a PwD, it has taught me to take in every opportunity to hold and be held; it has shown me that it’s not necessarily about how we finish – but what we are feeling along the way.  Touch has transformed me into who I am. All that poking, prodding and pushing into my personhood has given me the capacity to connect like no other.   So go ahead, tease, tickle and touch me – for when I reciprocate the transaction, you’ll get a really big return that will have you questioning every caress that came before.

   

Coming to Terms: Shame, Sex and Disability

Coming to Terms: Sex, Shame and Disability

I think it’s pretty natural that we all have those moments in the boudoir that we’d much rather forget; finishing too early, laughing at the worst possible moment, forgetting someone’s name altogether (this list is certainly not an exhaustive one), etc. 

I have had many an embarrassing moment myself, and typically they have been connected to my disability.  Let’s review: Locking someone out of my room and being physically unable to let them back in due to be naked and super crippled, getting pee from the condom catheter all over a perspective lover, etc., etc.   These moments have been actually pretty amazing for me, as they have forced me to look past the scripts that we all buy into when it comes to the sexual experience, and realize that it will never be perfect and that is perfectly okay.  Of course, this has taken a level of self-reflection that I am constantly crafting and tweaking.  Rest assured, my internal dialogue during these moments was something like, “What the fuck is happening?  Normal men don’t have these problems.” 

The other day, I had one of those moments, and to be honest it shook me a little bit.   I was hanging out on Facebook looking at something completely neutral/hilarious (I can’t remember, but it may have been a cat video or a baby laughing), when all of a sudden I had what I will actively refer to as a “spontaneous emission”.  I wasn’t in the least bit turned on or aroused, and it just happened.   Now, the minute it was done (after the initial shock that that just happened), I was flooded with this enormous sense of shame and guilt.   In truth, I was a little bit angry at the whole thing.    I didn’t plan this, I didn’t prepare, and I didn’t even get to enjoy the experience in any way.  What. The. F?! 

I was stunned for a second, realizing that there was no evidence of the event, because I was wearing the leg bag.  As I made this realization, it subsequently reminded me that I live with a disability.  In that few seconds, I had to come to terms (phrasing?) with the fact that my sex life will never be ‘normal’.   One of the first things I thought was, “Is this what happens to guys who can’t access their sexuality?” and “Why me?”  I had terrible day-mares about being in an important lecture and having this happen (for the record, the only time I want to have that fantasy is if there is someone hot with me in it). 

Not only did it throw me in terms of my sexual confidence, it has also made me question what it means to be a MAN.   I consider myself pretty liberal, and I understand that on a social level, some of the constructs and ideologies of masculinity and maleness are extremely outdated, and do not honestly reflect reality.    That said, it is interesting just how quickly a moment like this, can make you forget all of this.   I sat there and immediately thought that I am not a “real man” if I can’t even control that part of my life.    There were many different thoughts running through my head, and each of them was inextricably linked to my lived experience of disability: access, shame, maleness, authenticity, and attractiveness. 

I worried / still worry about what this means for me as a sexual being.  It annoys the hell out of me to think that because access to my sex and sexuality is so compartmentalized and sporadic, “spontaneous emissions” will be a part of my experience now, knowing how much raw sexuality I have to offer another (yup, that did in fact just happen. You’re welcome). 

Upon talking to a few people about this, and expressing the shame and fears that I hold about the issue, I was reassured.   One friend in particular offered a unique perspective.   They frankly suggested that this means I need to engage in self-love more often, as what my body was doing was simply ‘clearing the pipes’.   The idea of masturbating in an attendant services environment is terrifying for a number of reasons: having to disclose, condom catheters, and the inevitable clean up.   I cringe at the idea even now.

What I am realizing even now as I type this, is that my identity as a Person with a Disability and all the realities that entails, has scared me so much that I refused to even take the time to fully connect and appreciate myself.   

So, I could see this “spontaneous emission” episode as something to be shameful about, worried that my disability has denied me yet again (believe me, those thoughts are ever lingering), but I want to look at this as a chance to remind myself that my sexuality is mine, and this is an opportunity to revise and rewrite my sexual script by myself, so that when you read with me, you’ll hang off every word.        

Never Been Missed: Looking for a First Second Date!

In life, we experience a number of very specific and character building ‘firsts’: first word, first day of school, first failure, first job, first date, etc.     Each of these ‘firsts’ are seen as a rite of passage that each of us go through.  They give us the tools and the experience we need to become the people we want to be.   It is expected that these ‘firsts’ will quickly become seconds, thirds and fourths as we navigate the world around us.    I’d like to focus in on the first date, and discuss why I feel it has been a particularly pivotal post for me as a PwD.

The first date is a trope that we have become all too familiar with.   Movies and media have highlighted that one’s first date can have two very distinct outcomes: it can go amazingly and you can meet someone with whom you connect on all the levels; you know that whole “sparks fly” thing occurs, and the fires of passion begin a-burning.     On the other hand, first dates can lead to you making up stories to run out of there with your dignity intact.  C’mon, we’ve all been there: you’re looking across the table and thinking, “I should totally be binging Netflix right now”, wondering why you left your apartment for this sorry attempt at social interaction.   

Even with the risk of romantic ruin always on the horizon, we trudge forward, slogging through bad date after slightly better-but still-pretty-bad date, knowing that eventually, 1 will lead to 2 will lead to standing in the sun in Vermont.  We just have to keep putting ourselves out there, and we will click with someone, right?

Imagine though, that the cringe-inducing first date that is chock-full of awkward silences, uncertainty and a slew of poorly placed puns, was the only kind of date that you had ever been on.   That you don’t know what it feels like to actually connect with someone, because after drinks and dinner, as you wheel out from behind the table in your wheelchair, they don’t call you.  They say all the things that they have been conditioned to say, in an attempt to spare your feelings, and for two seconds you think maybe you’ll see them again. You don’t.

Seriously, at times it can be like living in a bad Adam Sandler/Katherine Heigl date film without the happy ending.   I am not sure how many times I have explained my disability to someone, being sure to insert a pun, waiting for the look of terror to twist into, at the very least an uncomfortable smile. How many times I have had text conversations that very quickly became one-sided and eventually ended by telling me they “just couldn’t do it” or some variation of this.     

These are things that could happen to anyone, I know, so it doesn’t necessarily mean that they are directly correlated to disability, but I will say that when you have never had anything other than a first date, each one marked by a series of nervous queries, made either to question or quiet the disability, these thoughts start to creep in.

To paraphrase a line from any number of romantic comedies from the late 80s to mid 90s, while I have been kissed MANY TIMES (I am indeed that amaze balls), I often feel that I will never be missed.  Will anybody ever want to see me again?    

I’ll never get to experience that which comes after the first drink or dinner, and bad movie we both watched together. I’ll never get to really understand what it means to be wanted My dating history will be filled by awkward half-hugs and nothing more.   I worry that every time I go on a date, you’ll only see a part of me, and never get the chance to experience the All-Encompassing Awesomeness that is Andrew.    I think I know why, too:  Agreeing to go on a second or third date with me, means that not only will you be getting to know me, you’ll be getting to know my disability as well.   The novelty of going on one date with that disabled dude will wear off, and all you’ll be left with is my crippledness in context.   

Many well-intentioned guys can’t handle that reality, and to them I say, “That’s okay, but you don’t know who you’re missing out on.”    The scariest part of that last statement is that, if they don’t come back for more, I’ll never know who it is they’re missing out on either.

If this world is all about our ‘firsts’, I think I may just be ready for my first second date.          

Accessing Your Ableism: The Fascinating Way in which Ableism Affects Our Perceptions of Sex and Disability.

Ableism is a tricky bugger, if I ever saw one.  Those of us in social justice/activist/advocacy/disability awareness (crip) circles use the term frequently to describe the actions of those who have blatantly ignored the experience of living a Deliciously Disabled lifestyle.   In our heads, we tend to think of it as an overt, blatant display of inappropriate behaviour towards a Person with a Disability: calling them a derogatory term, refusing to help them with something they need, ignoring them or talking down to them.    I always assumed that this was ableism—that to be an “ableist” individual meant that you were also an asshole of a special breed.     I couldn’t have been more wrong, and I am compelled to highlight why in this blog today.

The other night, I went to a book reading and signing by one of my amazing friends who works in the field of Sex and Disability, Kaleigh Trace.  She was talking about how we, whether we want to believe so or not, all harbour the capacity to access our own brand of ableism; that it was a part of each of us.  I would very quickly learn how right she was.

After the event was done, one of the participants who was heading to the subway offered me a hand in getting there (this was great, if not solely for the fact that I am directionally challenged in all the ways, but also because I thought he was quite the charmer).   We made our way out, and started making small talk about the kinds of stuff we liked to do, etc.   Then he asked me, “what I was into?”   In gay hook up terminology, this is undoubtedly an invitation to turn on the sexiness.  I asked him what he meant, just to ensure that I didn’t step over any bounds (I have a tendency to do so if a cute boy/possibility arises).  He sweetly said, he was just being polite, but he would be happy to discuss my sexual interests.   I was giddy with anticipation: What?! The guy who I think is really cute actually WANTS to explore this avenue with me?  Mind. Blown.  As we continued to chat, we were about halfway to the subway, when I mustered up some courage and asked him to hang out a bit longer (true fact: I NEVER DO THIS.  I get scared that the other person couldn’t possibly want to, and simply don’t ask).   He agreed, and we dipped into a coffee shop and chatted more.

What I found most interesting about our discussion was his curiosities and fears around sex and disability.   He told me that to learn about his sexuality, he had accessed conventional pornography (e.g. white, gay, muscular, homo-normative males), and that he had always wanted to sexualize a PwD, but didn’t know how.  Sidebar: I am sure that any of you who know me, understand the wide-eyed grin that crept over my face at that exact moment.  It was on, I had my chance and I was going to take it.  I made a few passing remarks about how sex and disability is the best thing ever, and should he want to sample it, here I am.

Throughout the evening, as we stumbled around the city, I watched him watching me.  I could see his wheels turning at the idea that this individual, a member of a group that he was taught never to eroticize, was sitting across from him provocatively putting a grape leaf in his mouth (in truth, I was shoving it in so that it didn’t fall—nothing sexy about that). I could see that he wanted to discover the deliciousness of disability, but all that he thought he knew was holding him back (that, and he had never met anyone as ballsy as I am).  Every few minutes, he seemed to relax, and then every so often the fear of the unknown crept beneath his smile.   It was so strange and beautiful all at once.  He had a plethora of curious queries, and after each one, he would smile and say, “Sorry,” as if his wonderings had opened a wound I had long since tried to close.  We talked about ableism a lot that night. 

I am a proponent of people being given the space to access their fears and discomfort around disability.  I think those are valid emotions that must be openly operationalized.  Truthfully though, I never thought I would see it happen in front of my eyes, as it was happening.   I watched this person confront his own ableism, and openly admit to me that the idea of sexuality and disability, both titillated and terrified him.  The difference here was, that it was not an overt, aggressive act designed to oppress me.  He wasn’t trying to hurt me or deny me; rather he simply wanted an understanding of something he had never been asked to truly consider before this very moment.  

What I learned from him is that ableism seen in the small gestures, the little moments, and the things that we are too afraid to access within ourselves, but that we’re dying to know the answers to.  It is there always, lying dormant beneath surface.    What I learned from him (and for this I am ever grateful) is that it takes someone with a strong voice, a cheeky smile, and an understanding of the opportunity that lives within oppression, to wake it, while simultaneously shaking up everything you thought you knew.

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