written by Dr EM

(Spanish translation here Sexo y Cuidados: una Perspectiva Personal )

I was in Primark on Friday when a young woman started screaming ‘No’ at the top of her lungs. I turned around to see what was happening and a female carer was trying to touch a woman in a wheelchair who had complex and multiple disabilities. I smiled because as soon as the disabled woman began shouting the female carer gently said ‘OK Charlotte, you don’t feel like it today’ and backed off. It was caring care, and Charlotte could communicate her wishes and was listened to.

I focus on single-sex care for the vulnerable because I have been through it and I know the need for care is coming in my future. I know too well how your life and world can change forever in the blink of an eye. I know the feeling of being at the mercy of others and for those who haven’t had that it is difficult to describe what absolute defencelessness does to you, how it sits with you forever.

I am horrified that I even have to make the argument for single-sex care, the facts and figures around male sexual abuse of disabled women and girls makes it feel that our lives are sacrificial. Our lives are already incredibly difficult, why would anyone want to make it harder for us?

Often described as a ‘hidden disability’ it doesn’t feel very hidden when my broken brain is really going for it. By going for it I mean maybe it is ejecting a stream of words, maybe my brain cannot think fast enough so I am no longer making choices and it is that feeling of watching a glass fall off a table but not being quick enough to catch it, or maybe I’m just too exhausted to try and mask my disinhibition and play a social script. Every time I leave the house, every time I interact with someone else I do so under a cloud of anxiety and the question ‘how will I mess it up this time’.

I use the alcohol analogy with adults when trying to describe what it is like to others. It is like the drunkest you’ve ever been but never sobering up. Every day is full of highs, that feeling of ‘I love you so much’ when you’re drunk with your mates, or ‘this is so brilliant’ even though it may just be a portion of chips or the taxi arriving. Indeed, the simplest things can make me feel triumphant. Being able to visit every shop I wanted on my list: you superstar! But it is also swamped with indignities, and that terrible low feeling you may get after a night out. Always feeling like you have ballsed it up, embarrassed yourself. The mask of ordinary has slipped. People are talking.

That is what life with brain damage is – acting, a show, desperately trying to appear normal, desperately trying not to be a burden to others. It is like you are always holding it together by your fingertips and the more tired you get the more you lose your grip on these threads and it unravels.

Sometimes I wish something visible had been left to indicate that I have this. That I have to follow a set of written instructions to get myself dressed in the morning, that I’m always bashing into things, falling over, that I can’t remember two thirds of information or my day. I have a large scar on my neck where the seatbelt became embedded in me but years of a thrice daily scar cream routine has made it very subtle. The truth bombs I cannot help but drop are less subtle.

I can’t understand what is happening quick enough, it is like treacle thought. So I need to be able to trust others, their judgement, their actions and their memories. The behaviour of men as a group means I have very little trust in them. Forcing disabled women to accept care from males goes beyond having our bodies violated, it means we perpetually live in a state of fear and stress. Of never being able to trust what has happened or is happening. Life is hard enough, don’t make it harder.