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.