A Touchy Subject

[Originally written on 10 December 2005]

A few things I've read on the internet today have reminded me of something I've been meaning to write about, but avoiding. Avoiding for years. I think it is time to write about it, but I don't know if I've got the time to go into it tonight

Touch. The lack of. Touch hunger, tactile deprivation, touch starvation.

As with anything, I write about this from my own personal experience, but I know it affects others (and of course, not just people with disabilities), too. It's another one of those subjects, the dance-around-it subjects, the if-we-ignore-it-it-will-go-away subjects.

I don't suffer from my disability - I never use that word in that context, that's something that others assume of me, but I do suffer from some things, I suffer from people's attitudes, I have suffered greatly as a result of my family's abuse of me, and their tacit approval of others who abused and assaulted me. I also suffer from touch starvation.

Living with a disability is to live a life full of contradictions, and this is one of the biggies. On one hand, you are touched a lot - especially as a child - docters and nurses poking and prodding and pulling at you, physiotherapists torturing... ahem, sorry, giving you physiotherapy, family and carers helping you walk, climb stairs, get up out of chairs, up off the ground, etc.

On the other hand - unless you are lucky enough to have family and friends who can think past the prejudices and assumption, and some people with disabilities are that lucky - you learn from an early age that you are essentially untouchable. People shy away from you, literally - I've had people physically recoil from me. We are seen as repulsive, objects of pity, asexual, less than human. Unclean. Some of us can go for months, years (years is probably an exaggeration - even in my case, but oh, it feels that long, sometimes) without affectionate touch from another human being.

OK. This appears to be all I can write at the moment. I have difficulty with this, not because I'm embarrassed about it, but because it is one of the most painful realities in my life.

Here is one of my favourite quotes relating to this whole topic, although I wasn't referring specifically to sexual touch writing the above, it is on the agenda, though. The article the quote comes from is excellent.

"Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." - Anne Finger http://www.newint.org/issue233/fruit.htm

I will write more on this, soon, eventually.

[And I did, surprisingly, on 5 February 2006]

My Skin - A Touchy Subject - Part 2


My skin has shrunk into itself
after almost 32 years of not being touched
except to remind me of how untouchable it is
and to remind me of its gaping flaws and wounds that people will fall into
if they come near me
The pain of this leaves me two seconds away from dying
every day

Years of physiotherapy - being pushedpulledstretched
into painful awareness that my body is worthless as it is
So it must be tortured into normal
It didn’t work
I never became normal (Thank God!)
but I tuned out my body
so I didn’t feel the pain

Only time my parents touched me was for exercises that hurt so much I wanted to cry and scream - but I was too scared to.
Huge adults leaning over me shoving my legs into shapes they weren’t designed for, folding up my legs and leaning on them with their full 6 foot basketball/rugby/sports playing weight
Yelling at me when I refused to do the exercises - lazy, lazy, lazy...

Cold eyes staring at me when I came home crying - pushed down steps, tripped up, punched
Sharp words slicing, blaming, condemning
All I wanted was a hug, to feel safe, wanted
Comforted (I can’t say, think or write this word without crying)

“You can’t be in pain, I can’t feel anything”, said my father, smile locked into place with mocking laughter
“Growing pains”, said the doctor - I didn’t know what muscle spasms were until I was well into my twenties
No one told me that they were a normal - but painful - part of spastic CP - not the doctors, physios.
Did they even know?

Psoriasis came when I was sixteen
My skin growing extra layers of hardness
Layers that my heart had not yet developed
Leaving me still hopeful that I would be touched
with gentleness, affection
and for no other reason than to give joy
and comfort
and pleasure

Occasional glimpses of what could be, what I could have
Relationships over before they really began
With men who I couldn’t have stayed with, even if they hadn’t left first
I am glad they left
But I learned why I had a body
And that if I could enjoy sex (and how I did!) then my body was fine, practically perfect
Unfortunately, this is one of the few things I like best when there is another person
I love sex
But I can’t be casual about it
And now only want it with someone I love
and who loves me (Woody Allen notwithstanding!)

My tears dry up before they fall
pulled back inside myself
by a heart that has become a desert
deserted

Words are the poorest substitute for a touch given with awareness
but they are all I have
And, no, a massage wouldn’t help, getting a pet wouldn’t help (I am poor, I can barely afford to feed myself)
The emptiness is too overwhelming
I want someone to look after me for once
And how do I talk about the fact that sometimes, if you have a disability, you don’t get looked after (there is this odd belief that all people with disabilities have someone to look after them - perpetuated by people who don’t know anyone with a disability) - no one ever believes me
It’s true, even if you don’t believe me
Sometimes you get nothing, not even the basics
Cruelty and neglect are equal opportunity - they do not discriminate

Nobody wants to hear any of this
I don’t want to hear any of this
But it is my life
Right now
Today
But please
Not tomorrow

This isn’t a poem, this is the only way I can write about this.