The Body Won’t Follow the Brain

I walked into the building, and a carer showed me to R’s room. She had a knowing look in her eye, one that spoke of many fleeting glimpses of the escort world with her clients.

 

An electric wheelchair in the left corner was the only sign that this room belonged to anyone with different needs. Well, that and the hospital bed. Having worked in hospitals before, I was no stranger to disabilities. Yet still to this day, I get a bit of a shock when I meet a new client with a disability; purely because disabilities are so varied that I never know what to expect. R took me by surprise. His entire body less than half of my height, covered by a sheet, you would think that he looked frail; but on the contrary, his strong voice and his smile spoke volumes for his strength of character.

 

“Can you lock the door?” R asked after the carer left. I obliged, and sat on the edge of the bed. After some small talk introductions, R began telling me his story.

“I have a condition called osteogenesis imperfecta. For me, it means that although the top half of my body is fairly OK, the lower half of my body is very brittle. So you just have to be very careful with my legs; you can’t put any weight on them”.

 

I have to admit, I got a little nervous; I know of osteogenesis imperfecta, and I did not want to start my morning off by breaking his legs or hips. This was definitely the most frail client I had ever seen and I wanted to make sure he stayed in one piece.

Trust me, it might not be today, it might not be tomorrow, it might be 20 years down the track but at some stage she will come knocking and Disability – she’s a total bitch

R asked me to help him get ready for some fun, so I used a wet wipe to remove the urodome that allowed him to pee whenever he wanted to. His legs and arms were weak, occasionally at odd angles, but he was surprisingly mobile, able to shuffle up and down the bed and help me with his shirt. R asked me to lay on him, and I did – carefully holding my body weight off of him.

 

“Help me touch you,” R asked. “Hold my wrists and lift my hands up to your face”.

As I lifted his arms by his wrists to hold my face, looking into his eyes, I couldn’t help but feel a pang of pity. As someone who loves to explore people with my hands, I couldn’t imagine needing assistance to be physically intimate with someone else. At the same time, I reflexively squashed those feelings of pity because after years of working within hospitals I knew the last thing people with disabilities wanted was pity. R confirmed this, an hour later, when we stopped for a break.

 

“I hate that people won’t date people with disabilities,” R emphasized. “For me it’s humiliating that if a pretty girl comes to see me, the carers know that she is probably an escort…. There’s no privacy. After I was sick last year, I lost the ability to even masturbate… my arm is just too weak. So now for me, I’m lucky if I have sex twice a month… I just want to be able to be with someone.”

 

R’s wishes were really no different from any of us in the sense that it is in our human nature to want to be loved. Moreso, all that people with disabilities want is to live as normal a life as is possible, and R and I bantered about this for a long time. R had a job for 10 years with one company, he’s jumped from a plane, he has lived as normal a life as he possibly can. He has many more years ahead of him, and he is looking forward to them and actively planning to enjoy them as much as he fucking can. The first threesome is already in the planning stages for his bucket list. The main thing, however, that he feels is missing is intimacy. Being human, all he wants is to feel the same intimacy that we all take for granted. And yet his body won’t cooperate with him; the body won’t follow the brain. I can understand why many people would struggle to be in a relationship with someone with a serious disability; after all, how would you feel if your partner needed help to be intimate? What if they couldn’t push you onto the bed, couldn’t stroke you? Couldn’t hold you tight? Obviously there is a lot more to a person, but if it affected you personally –what you would do? Could you deal with it?

 

How ironic that there are so many relationships out there where intimacy is a shadow of an earlier time. It’s devastating to me that there are people out there who have allowed intimacy to creep out of their life and relationships when there are others so desperate for the thing that they have taken for granted. We walk blindly through our own lives, oblivious to the blessings we do have. We whinge about our job, or the fact that our partner only sleeps with us once a week, when there are people out there who do not even have this.

 

Over the years I have helped high level quadriplegics on ventilators, I have helped severe stroke victims, I have been there in the final moments for organ donors. I am most definitely aware of my blessings, and it frustrates me that the general population is so unaware until disability suddenly creeps into their life. Trust me, it might not be today, it might not be tomorrow, it might be 20 years down the track but at some stage she will come knocking and Disability – she’s a total bitch. At some stage, we will all experience this urge to hold onto our independence and our sexual nature. So since we are all sailing down the same river in the same boat, it saddens me that we make people with disabilities generally feel less than human, or invisible, or make them feel like they have less of a life than us. It saddens me that we make them feel so devoid of human touch and intimacy. They deserve to feel physically close to someone, or even to feel loved, just as much as anyone else or maybe moreso.

 

R’s message was one that needed sharing, and it’s a simple one. They don’t need pity, they don’t need someone to do everything for them… all they want is understanding and a little human contact. I guess that’s what we all want.

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