Intersections

Forced normalization practices on children with Cerebral Palsy & the long-term mental health effects

The article below appears on Ramp Up http://www.abc.net.au/rampup/articles/2013/07/29/3813511.htm

It’s Cerebral Palsy Awareness Week folks! It should be a time when I can see my body and my experiences reflected in the images and in the issues which are being brought to the public domain.

So I go online to try and find myself, and am informed that there are 33,000 Australians with CP - that’s one in 400 babies diagnosed every year. I see children who could have been me, bent legs, bodies held in walkers, smiling. But their smiles unsettle me and remind me of my childhood.

You see, there is an untold story behind their smiles, behind these images which most people see as inspiration, bravery, of children overcoming their disability. A story never told in the awareness campaigns is the one that destabilizes these happy images - how the forced normalisation practices can lead to long-term mental health issues. This is what I wish would be part of the public discussion and awareness this week.

What are the psychological effects from a childhood spent being subjected to painful, intensive and intrusive therapy regimes, which have the effect of reinforcing negative messages about a core, inescapable part of who we, as people with CP, are? For me, it has been depression, suicide attempts and major anxiety as I tried to find a way to live within a body so interconnected with my emotions, a body which I was given no positive way of connecting to. I was left with only shame, guilt and an inbuilt feeling that I was inescapably wrong.

My early childhood photographs could have seen me included as a poster child for Cerebral Palsy Awareness Week. My lips stretched into a smile as I stood up as straight as this bent body would allow, knees held back in pain, my body pinned for hours in a standing frame.

I was the gold-star child at my special school, that brave little kid who could take more pain every day than all the others. I never cried no matter how much it hurt. I was told the CP mantra that many people who live with CP would remember, which was, ‘no pain no gain’. I repeated it over and over while I tried so hard to walk, to be ‘normal’. I thought if I kept trying with everything my five year old body had, I could push this thing out of me, the CP.

I spent 12 years from the age of two to fourteen attempting to normalise my body. I tried to make it straighter, fighting against the natural tense state of my muscles. This normalisation, this Holy Grail, was the focus of my life and my family’s life. Unbending this bent body came before everything else, before developing the capabilities or interests of my mind, before other aspects of the rest of my personality. I would succeed, I would walk, if I just went through the pain every day. I would overcome this CP, push it out of me. I would become ‘normal’ because I was so determined, and I was so brave.

I spent 12 years hearing and feeling the message that my CP, my very body, my muscles were so very wrong. But as time progressed, I realised that the CP wouldn’t go. It was there. Inside me. Every time I got upset, my muscles would tighten along with my emotions. Every time I got excited, scared, right there, it was in my muscles, inside me. It wouldn’t leave even with all the exercises and painful stretches every day. All this pain and still, I couldn’t expel it.

Every day of my life I would have to be hurt by the exercises, for hours. I was told that if I stopped the interventions on my body, that thing, that hell on earth, would come for me. I would end up in a wheelchair. I reached breaking point at 14. I couldn’t do it anymore. I called stop. Mum and I cried all day and wondered what future would await me.

The Wheelchair arrived for me. And I tried to forget how I’d failed. Tried to not feel this tension that lives inside my body. This tension that connects my mind, emotions and muscles, was until recent years, a deep source of shame. The tension is how it feels to live inside my body but it was tied up with a belief that I had failed, that I was still flawed.

What does this do to children, and how does it affect them as adults? To reinforce daily an unattainable notion of the need to be ‘fixed’, of reaching for an idea of normality that isn’t possible? What happens when we finally, one day, realise that we will always have Cerebral Palsy?

For me it created a profound disconnect from my body, and an internalised hatred and shame toward an intrinsic part of my identity and self.

My parents had never known anyone with a disability before I came along, and there are lots of things I wish they were told when I was born. I wish that someone had told them that my body did not need to be ‘fixed’. I wish that someone had taught them the social model of disability, and that it is not the body which needs to be changed but society. I wish I’d had role models and pictures of others with non-normative bodies to put up on my wall and look up to. I wish I had been taught ways to connect with my body as it is and the unique way my muscles and emotions are intertwined, as I have now learned to appreciate and find beautiful.

One thing I would love to see change in my lifetime, is that parents who have a child with a disability would be provided with contact details of adults living with that disability which they can call and talk to. This would allow them to hear from those of us who live the experience. We could provide information on the valuable and complex experiences of a life lived within a body similar to that infant which they are now holding. Our voices would then become a part of the picture alongside that of the doctors for new parents to hear, a guide for them, as they wonder, scared, how to give their child the best start to life.

How to talk to a new lover about Cerebral Palsy by Eli Clare

Tell her: Complete stingers 

have patted my head, kissed

my cheek, called me courageous.

Tell this story more than once, ask

her to hold you, rock you

against her body, breast to back,

her arms curving around, only

you flinch unchosen, right arm trembles.

Don’t use the word spastic.

In Europe after centuries

of death by exposure

and drowning,

they banished us

to the streets.

Let her feel the tension burn down your arms,

tremors jump. Take it slow: when she asks

about the difference between CP and MS,

refrain from handing her an encyclopedia.

If you leave, know that you will ache.

Resist the urge to ignore your body. Tell her:

They taunted me retard, monkey,

defect. The words that sank into my body.

The rocks and fist left bruises.

  

Gimps and crips, caps

in hand, we still

wander the streets but now

the options abound: telethons,

nursing homes, welfare lines.

Try not to be ashamed as you flinch and tremble

under her hands. Think of the stories you haven’t

told yet. Tension locks behind your shoulder blades.

Ask her what she thinks as you hands shake

along her body, sleep curled against her,

and remember to listen: she might surprise you. 

 

---------------------------------------------------------------------------------------------------------------

2 of my fav Eli quotes from the Queerness and disability conference:

I want to get hot and bothered. I want to read about wheelchairs and limps, hands that bend at odd angles and bodies that negotiate unchosen pain, about orgasms that aren’t necessarily about our genitals, about sex and pleasure stolen in nursing homes and back rooms where we’ve been abandoned, about bodily—and I mean to include the mind as part of the body—differences so plentiful they can’t be counted, about fucking that embraces all those differences. I want to watch smut made by and for queer disabled people and our lovers, friends, allies, our experiences told from the inside out. I want fucking, delicious one night affairs, but please don’t leave out the chivalrous romance. Let’s face it: I want it all. It’s time. I want us to turn the freak show on its head, to turn away from the folks who gawk and pity us, who study and patronize us, who ignore us or fetishize us. I want us to forget them and remember each other as we declare and create our sexualities.

I am looking for friends and allies, communities where gawking, gaping, staring finally turns to something else, something true to the bone. Places where strength is softened and tempered, love honed and stretched. Where gender is more than a simple binary. Places where we encourage each other to swish and swagger, limp and roll, and learn the language of pride. Places where our bodies become home.

White, disabled, and genderqueer, Eli Clare happily lives in the Green Mountains of Vermont where he writes and proudly claims a penchant for rabble-rousing. He has written a book of essays Exile and Pride: Disability, Queerness, and Liberation (South End Press, 1999, 2009) and a collection of poetry The Marrow's Telling: Words in Motion (Homofactus Press, 2007) and has been published in many periodicals and anthologies. Eli speaks, teaches, and facilitates all over the United States and Canada at conferences, community events, and colleges about disability, queer and trans identities, and social justice. Among other pursuits, he has walked across the United States for peace, coordinated a rape prevention program, and helped organize the first ever Queerness and Disability Conference. When he's not writing or on the road, you can find him reading, hiking, camping, riding his recumbent trike, or otherwise having fun adventures. 

A letter to my 16 year old self

I have been thinking lately of what advice I would give my 16 year old self, that scared, painfully shy ‘girl’ hiding away from the world believing she was a freak because of this non-normative body, a freak for being attracted to girls and most defiantly a freak for harbouring the secrete desire of wanting a cock of her own.

I would tell her YES you can have sex! Just because when you google ‘Cerebral Palsy and sex’ late at night and find nothing does not mean that bodies like yours aren’t having beautiful, hot, raunchy times right now somewhere in the world!  

I would tell her the reason why women who ‘look like lesbians’ make you so very uncomfortable, make you tense, make you squirm, your breath come faster, your hands go clammy is not because they are odd and you can’t understand them. It’s because you really want to kiss them, find out how they live, (where they find their clothes to dress like that!), how they love and how they fuck.

I would tell her this is what attraction feels like. Follow it, don’t be scared of it. Women will find you beautiful, just as you are. They will take you on journeys to some of the most transformative moments of your life! They will show you desire. They will break your heart, and you will find them so exhilarating that you’ll go through it over and over again.

I would whisper the word genderqueer in her ear. Tell her/him/me that it’s ok to not ‘feel like a girl’, to have ambiguous junk; that some people will love your body, find it fascinating.

I would tell her to find a way to buy your first vibrator. Sneak it into your bed and learn your body. Know your body, what you like and don’t like, what fantasies turn you on.

Be opened to change, to experimenting. Sex is fun, approach it with desire filled fingers, humour, a sense of adventure! You are beautiful, and strange and odd, just as you are. Embrace it. Find what brings you joy, your/our body holds so much joy. Expand. Breathe into it.

I must not find the medical profession sexy...

Doctor put your hands on me.

Tell me all the things that make me abnormal.

Make me different. Whisper them.

Make my heart beat faster.

Say what will happen if I don’t let you touch me,

cut me

if I abandon this stumbling, shaking body,

find wheels

in search of my mind, of ideas.

Tell me how my legs

will bend

and bend

and bend

until I curl about you

Tell me how growing old will cripple me.

Tell me just what kind of cripple I will be.

I will tell you of my racing mind, filled with energy

that can propel this body up mountain.

I tell you just haven’t seen me move filled with desire and wanting

I will tell you the story of my body,

Its movements and emotions intertwine.

How I wear my feelings on the surface

of this skin, in every muscle.

You say to relax.

You say you look anxious

I say I am full

of feeling, full to the brim.

I move and watch emotions over-flow

running down my legs in big tremors.

I will teach you how to read my body,

to know its twists,

its bends, its shakes

I will turn your white-walled box of knowledge

upside down and inside out

I will tell you of things which cannot be found your textbooks

things which must be lived to be known

so don your white coat and come closer,

put those gloves on with a snap.

oh doctor put your hands on me.

and I’ll show you just how abnormal I can be

She dips her head to write to me

She dips her head to write to me

makes me wait for her words,

teaches me that less can mean more.

This body is a mystery

I wanna learn the places with my lips where

tight muscles become loose

and my knowledge of women, of able-bodies

simply

does not apply

She is different. We are different. Our bodies speak a strange CP language

where jumps, tension, startles mean keep going, you are doing it so right

She says live in the now,

pretend like we don’t know any better.

We are all wanting and adventure.

 We are bodies of knowledge for each other.

Read me.

dip your head, tell me what you see.

tell me to let go

tell me

tell me

tell me

But worry drums in the back of my mind

grows

we are entering a space

amplified by shame hidden

just under our skins

My feelings slip and slide until it is unfair

sometimes I am full of shared sinew and muscle calling out for her echo

others I am curled up in bed crying fool you have been hurt before.

This body remembers

I am all battered and bruised heart today,

memories of lovers footfalls fading away.

They are grounding stones of heart-ache

saying turn back

turn back

before it’s too late

So I let her go

I tell her I can’t, I’m unsure

and brake the cord of sinews that pull us tight

together

She dips her head

from my view

clicks stop

vanishes 

gone