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.