Friday, December 15, 2006

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

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

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
But please
Not tomorrow

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


imfunnytoo said...

Wow. Damn that hurt.

Didn't it? Doesn't it?

Great post

andrea said...

I can relate to -- in a smaller way -- all those years of being handled but not being touched. It's the difference between being touched as an object, and being touched as a person. And it's worse when your complaints are repeatedly dismissed:


Book Girl said...

imfunnytoo -

Yes, it did, and yes it does. It's one of the cruelest things that is done to people with disabilities, in my view.


Book Girl said...

andrea - "It's the difference between being touched as an object, and being touched as a person."

You are so right.

"And it's worse when your complaints are repeatedly dismissed"

Yes, absolutely, and it's even worse than that when you've been trained *not* to complain - as so many of us were.

Thanks for your comment.

Sandy D. said...

I'd like to feature this (along with Inspired By) in the next Carnival of Feminists, ok?

Book Girl said...

sandy d. - you are most welcome to put this up at the next Carnival of Feminists.


Moggy said...

I had parents that were physically affectionate, but because of how things were done, I learned to associate proximity/touch/caring with being sometimes-violently restrained and hurt. So even though I craved deep-pressure touch and mutual displays of caring, just thinking about it triggers fight-or-flight. At best, I've tolerated hugs or closeness because I didn't want to hurt my parents by refusing.

I did have two relationships, but they made things worse. It taught me it's a different pain to have someone supposedly in love with me harm me in similar ways. To have them lose interest in anything other than clinical-cold touch, to restrain/hurt me if I became (non-violently!) upset...

I have dreams, many nights, of being in the same room as a (made-up) loving safe person that I know can give me what I need. But in the dreams, instead of that happening, I panic and spend the rest of the dream running away. It symbolizes fairly well what my "handling" as a kid did to me in more ways than just touch -- I know what I need, but I am too damaged to deal with it.

magniloguence said...


The first thing I thought was "Oh, you poor dear..." Not in the pitying manner that it comes across in type (which is why I almost didn't type it), but in the way that I usually do right before I hug someone.

My body is 'whole,' 'normal,' in its shape and construction, at least (but not in its ...well, I'll get to that), but I know what it is to crave touch and not be able to get it, or get the right kind of it.

I am, on the one hand, extremely social and physical in my sociability. I love hugging and cuddling with friends, simply because they are there, and they are wonderful, no matter what they look like. (That's probably one reason Aunt B and I get along so well, even though we're on opposite sides of the country and have never met)

On the other hand, I'm very nearly agoraphobic, and shy away from, well, everyone. I have an extremely hard time with crowds and others anywhere near my personal space, partially because of Social Anxiety Disorder (fun!), and partially because of my Sensory Integration Dysfunction.

Though I have a lot of the symptoms, my particular manifestation is somatic. My skin is hypersensitive, and I can tickle myself just by resting a hand on my knee. When I'm upset, my entire skin just lights up and I can't bear to touch myself, let alone let anyone else touch me... wearing clothes, crossing my legs, having a breeze wash over me... overstimulates and exhausts and makes me want to scream and cry and flee.

Combine that with social issues, and you've got a recipie for disaster (freaking out at church from all the people who want your attention Right Now because they haven't seen you in ages, when the're trying to hug you and physically restrain you to keep you in their presence? Is cruel and unusual in the worst way).

(Sex was a whole other issue. Hypersensitivity sucks beyond measure, when the friction of a sheet, or a light caress either sends you into gales of laughter as you curl up fetally, or makes you flail and try to hit things to make the sensation stop.)

But I have the other side of it as well. I go sensation-seeking, when I need to be touched (firmly), to have things in my mouth, to run my hands over the fence and twirl around in circles. If there's nobody there to hug me and rub my back and touch my hands, I tend to get a little manic. Then I crash, and I can't be touched.. can't even get through a shower without my pruney fingers sending me fleeing.

So... it's different, but the same. And I'd hug you. I don't know who you are, but I would. I'd hug all of you. And we could go visit Aunt B. and lounge around in bed reading poetry.

Magniloquence said...

Gah. I can't even spell my username right. That's magniloquence, for those keeping track.

Patricia Singleton said...

I can relate to some degree to being starve for physical attention. I stopped asking for a hug or a kiss from my parents because my mom wasn't very affectionate physically and any attention from my dad was of a sexual nature. Hugs shouldn't hurt and sometimes they do. Thanks for sharing your painful story.

Marj aka Thriver said...

This is so moving to read. I have so many thoughts and feelings about it, I don't know where to begin. I guess I'll begin with anger. Aaaaarrrrgghhh! There is so much awareness we need to raise in this ignorant race we call "human." So often it's "human" without any trace of "humane."

Thank you so much for participating in this edition of the BLOG CARNIVAL AGAINST CHILD ABUSE. It's a wonderful contribution. (I maintain the carnival and I see you have a link up to me. Thank you! I will add you to my sidebar links as well.)