What’s the Story?

 

My Left Foot was on RTE 2 on Saturday night. I know it well because it was one of the ‘comparative’ texts I studied for my Leaving Cert (the film, not the book). Of course, me being me, I’ve read the book as well and it seems to be the voice of a man who very much came from an era where disability and impairment were problematic (okay, let’s face it, that’s every era – nothing’s changed there). Christy Brown is regarded as one of the most talented Irish writers of the twentieth century, and his name has become synonymous with triumph over adversity, literary genius, truly inspirational. And as a writer with Cerebral Palsy myself, I reflected on what it’s like to live in the shadow of such genius, and such brutal and cold oppression such as that endured by Brown.

If I had been born thirty years before, would I too have been relegated to watching life pass me by from under the stairs?

I’m constantly being told that I should consider  writing an autobiography, as Christy says ‘my own story’, and although I’m sure that every writer toys with the idea at one stage or another, part of me can’t see anything particularly extraordinary about my life. Unlike Christy Brown I was mainstreamed, and was very much a part of ordinary family life. I went to school, where I detested homework, and then to secondary school and college. I was always convinced that this was the status quo for other disabled people too, in spite of the fact that there were only two other students with physical disabilities in my school. (I say physical because there are also hidden disabilities like dyslexia, etc.)

Sixty years on from the publication of My Left Foot, I know that there are hundreds of autobiographies written by people with disabilities. In my home town alone, two men with Cerebral Palsy have published their own stories – Brendan Brophy wrote On Three Wheels and Dealing a Bad Hand and David Boland wrote Life from the Tip of My Tongue. Their style is different from Christy Brown’s, although some experiences are the same such as being in the CRC. My good friend Leigh Gath is currently extending her autobiography Don’t Tell Me I Can’t, the s\tory of her incredible journey as a thalidomide survivor (she has hands and feet, but not arms and legs) growing up in Newry during the Troubles, finding her identity as a sexual being and escaping from her alcoholic husband to finally find true love.

The progression of the perception of disability between My Left Foot and Don’t Tell Me I Can’t is intriguing. In My Left Foot Christy is preoccupied with his physical limitations and the now outdated terms he uses to describe himself, such as ‘cripple’ and ‘handicap’ whereas having been born thirty(?) years later, Leigh has a different perspective. Despite her specialised education at boarding school, she can clearly see from a young age that she is not the ‘problem’ but rather she lives in a society that won’t accommodate her needs. This frustration led her to become involved in disability activism and hard-core protests in trying to secure the rights of people with disabilities. It’s interesting to note that Leigh grew up in Newry, a community divided into Catholic and Protestants, while also inhabiting a world that endeavoured to reinforce the differences between disabled and non-disabled people.

Christy Brown’s perception of disability is now a little outdated. But one thing he must be credited for is that he gave permission to the disability community of Ireland (and the wider world) to tell their stories. Unfortunately at present we live in a world where these stories often exist in isolation. Christy Brown’s book may have garnered him worldwide recognition, but the rest of us face a new challenge. Disability has become so commonplace and integration is supposedly the status quo to the extent where, in the future,  writing your story from the perspective of having a disability won’t be enough to gain you credibility or respect.

Instead, it will be up to us as the future Christy Browns to push the message that disabled people in themselves are not problematic. It is society that disables, society that insists that we are different. A disability or impairment can never be overcome, but obstacles created by our society can be removed, if we put our minds to it.

And though I admit that I also am a sucker for a good old ‘triumph over adversity’ story, wouldn’t it be simultaneously strange and wonderful if we had more stories like: ‘Wobbly Yummy Mummy had no problems accessing mainstream school, or going to college, or accessing transport. She lived an average life with her husband and her kid. She sold a billion copies of her bestselling novel. The End.’

Okay, that’s a little boring. A little ordinary, even. But a good writer will always find the extraordinary in everyday life, if he or she is willing to look hard enough for it. My hope is that in the future, disabled  people will be perceived, and have the courage to portray themselves as the multi-faceted, complicated creatures we are.

And undoubtedly My Left Foot, both the book and the film version will be studied for decades to come, and my hope is that students will exclaim, ‘How could Irish society exclude Christy Brown and other disabled people for so long? Thank God Ireland ratified the UNCRPD!’*

*We haven’t, as of 23rd January 2018. The Minister of State with responsibility for Disability promised it would be ratified by the end of January. Forgive me if I don’t hold my breath.

 

 

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Fitting in

It might surprise those who  know me to learn that despite my passionate way with words, I once was seriously lacking in self-confidence.

I have always been integrated into a mainstream environment. When I started attending primary school in 1989, nearly thirty years ago, integrating students with disabilities into mainstream classes was certainly not the norm. it didn’t take me long to work out that I was the ‘other’, an undesirable, almost an example of what could go horribly wrong in life. By the time I was eight I always felt a hint  of self-loathing in the background, a sense of shame, responsibility. I must have done something pretty abhorrent to deserve such rejection, such isolation by my peers. I couldn’t be trusted to do PE, to play out in the yard. By the time I reached secondary school I was something of a pariah. I cycled to school on a red, then blue, tricycle. I had a laptop. I walked from class to class like I was drunk.

The only time I ever got closed to being kissed (‘shifted’ as we say in the Midlands) was in third year and a young lad asked me, stating that it was part of a dare. I declined as the boys fell about laughing. When I told my friend, she said I should’ve gone for it as I was sixteen and at that stage, had had no encounters, romantic or otherwise. After all, it was the best I could do, the best I could hope for. For a long time I accepted this as the status quo. (My husband was my first and only kiss- isn’t he  lucky?)

I was the geek in school – the brainbox. The world of the average teenager was one I didn’t fit into.

At fourteen, until my early twenties, I instigated a war with my stupid spastic body. While the girls in my class were wearing jeans, tight-fitting tops, hipsters and belly-tops, I was wearing baggy combats and my mum’s old t-shirts. I didn’t own a single dress or a skirt because I didn’t see the point. The girls in my class were ‘sexy’ whereas I had nobblity knees, ever-jumping arms and a screwed-up mouth. Ironically, the only thing that I liked about myself was my brain (which is ironically damaged!), my mental ability.

In fifth year, I decided that I needed to define myself as someone other than the class cripple, the tokenistic inspirational figure. In a world where I would never fit in, I  had to be good at something. Around the same time, I started exercising more and I lost weight. I was delighted with myself. I started eating less. I was finally the clever, skinny girl in class. I had a small group of friends. I almost felt beautiful, normal.

It didn’t matter that my own ribs ripped into my skin when I lay down at night.

It didn’t matter that I stayed up till twelve at night learning Irish poems while my parents pleaded with me to stop. ‘This shit is not the end of the world,’ my father would say as I looked at him from my books, panda-eyed, my brain melted. And I could never find the words to explain to him how much I needed to do this, that unless I conformed that I wouldn’t be worth anything, not only in the eyes of others, but in my own eyes.

In 1999, I went on a pilgrimage to Lourdes with the Irish Handicapped Children’s Pilgrimage Trust, and I remember vividly seeing the seven abandoned crutches hanging by the grotto, left by those who had apparently been cured. Did I want to be cured? I was asked before I flew out, by various people. Cured of what? My mum retorted when I told her. She’d always been adamant  that I was fine the way I was. Okay, I lie: she wished that I wasn’t such a huffy teenager and that I took the initiative to clean up  now and then, but in terms of my disability, she was pretty accepting. And it was only after I’d been to Lourdes (and came back my same old spastic self) that I started to question not only how I was perceived but how disability in general was perceived.

After all, didn’t Jesus cure the cripples and the lepers? When I was say, communion age, I don’t remember cripples being mentioned in religion class and I wonder now whether that was a deliberate action taken by the teachers, to avoid awkward questions. But I knew from going to Mass that Jesus cured cripples – the blind, the lame. In my teens I had many an elderly lady come up to me, unapologetically invade my personal space and say, ‘I’ll keep praying for you,’ when ironically their lives were probably much crappier than  mine. Hell, in my twenties I went to Mass in Emo one evening and the priest actually apologised to me afterwards for reading a gospel about curing the cripples!

Disability is unsexy, disability is undesirable. This is the mantra we crips are taught, from cradle to grave. We exist only to remind others that they are lucky, that they somehow dodged a bullet in being ‘normal’. I’ve actually heard people I know and love saying ‘God, if I were to be diagnosed with xyz disability, I think I’d kill myself.’ We are amazing simply in being. But of course the majority of us crips hate this patronising bulls**t. Unfortunately we live in a world where we are expected to conform, to fit in. Look at all the women’s fashion magazines. You’ll never see a size fourteen in any of them (is it true that fourteen is considered a ‘plus’ size?) and rarely will you find a disabled model.

With no strong disabled role models until my mid-twenties, I spent the majority of my life second-guessing myself. I went to a secondary school that had an upstairs and never questioned why it had no lift. I wore high heels to my grad and didn’t understand why I couldn’t walk in them! I chided myself for getting tired even though I know I use more energy than others doing menial shite. To slow down, take it easy, makes you weak, not quite as capable. Even now I cannot shake that mantra completely.

Despite the fact that disabled people are shouting loud, demanding their rights (your end of January deadline for having the UNCRPD ratified quickly looms, Mr Finian McGrath), there’s still an uncomfortable undercurrent, an unspoken consensus that we  should strive to eradicate impairment in all its forms. Hitler had ideas on how to achieve this (gas chambers) which is a shameful part of our history. But his ideals are far from relegated to the past. I read an article published just last week about how Pakistan is promoting the use of drugs and technology with the aim of ‘eradicating disability by 2025’. (Why such a specific timeline?) In the same article it’s reported that Pakistan has done little to further human rights of people with disabilities in the country. I can’t be the only one who is frightened by this.

One such piece of technology which is increasing in popularity is the eksoskeleton, more commonly known as robotic legs. I read in the local rag the other day that a local man has recently acquired one and highly recommends it. And I am trying to see the positives too. There’s great benefit in exercise with the aid of an ekoskeleton, particularly for those paralysed from the waist down. What makes me uncomfortable is  that it pushes wheelchair users further down a hierarchy, reinforcing the idea that to be physically disabled is far from desirable. For those of us who have struggled on our road to self-acceptance, it reminds us that we are ‘Other’ and that we live in a society more preoccupied with making sure people fit in rather than committing to constantly strive to make our world more accessible. Not forgetting, of course, that we need to be inclusive of people with visual, hearing, intellectual and emotional impairments as well.

I only hope that in ten years’ time, when my own daughter is in her mid-teens, that there aren’t hordes of insecure disabled teens across the country, doubting their proper place  in the world as I once did.

And if I could give them one piece of advice, it would be this:

Stop trying to conform for the wrong reasons, and make sure you stand out for the right ones.

Aussie Dreams

Finally, after losing a whole day of your life,
You are hovering over the fair green isle –
Squares and squares of different shades of green –
From up here you could tell where the grass is greener.
It’s so beautiful. You’ve never really noticed it before.
As the wheels bounce off the runway you tell yourself you will appreciate every second.
A second might not seem long, but sometimes it’s forever –
Before, each second dragged as the Aussie dream refused to come nearer,
And now seconds fly as your family live on in your absence.

 You’re prepared for how bloody cold it will be –
Hats and scarves at the ready –
Isn’t that why you left in the first place – because of the bitter cold?
You’d be forgiven for being bitter
For being fed the lie
That having a good Leaving Cert was the key to a good future
And that your performance would define you for the rest of your life.
As you walk through the airport, shocked at the Irish signs,
You’re also shocked to see your childhood neighbour sauntering beside you in Customs.
Ah, we Irish stick together, even in flight,
Showing solidarity in escaping a life of misery and monotony.

 And now, back in your hometown
You feel like a celebrity
Being stopped in your tracks by those you went to school with,
Worked with for a while,
got drunk with every Saturday night.
It always was the same old  story –
And for some, the tale remains the same.
Giddy with excitement and faint disappointment,
You hardly can decide what to do first.
You stuff yourself with Tayto and Barry’s tea,
The familiar tastes leaving an odd cramp in your stomach. 

Feeling the joy of seeing your loved ones,
You wonder why every day can’t be like this,
But no-one bothers to tell you that
You’ve forgotten to take off your rose-tinted glasses.
Behind the smiles and the warm embraces
Everything is the same as it ever was, and will ever be –

Those who love you have continued to do so in your absence
But your fair country refuses to drag itself out of depression
Like a feisty school kid is pulled out of bed on a frosty morning.
Rent in Perth and Tullamore are nearly on a par,
And the streets are lined with people who are ‘wealthy’
But can barely afford to live.
Old Tom still drinks in the same pub on a Thursday night,
And those who stayed behind in pursuit of their pot of gold
Ended up with a bucket of coal.

And when they ask whether you’d come back,
You purse your lips and smile and say simply: ‘Some day.’
Some day when Ireland becomes sexy and alluring
And rewards young people for a good day’s work.
Some day when you’re allowed to have big dreams
And not clipped around the ear for ‘having notions’.
Some day when having fun is not tied up with being obliterated.
When being ‘home’ makes your heart soar higher than being away.

But that day is not today.

And so your heart breaks as you stuff your life back into your suitcase,
Trying to ignore the glistening tears
Falling from the eyes around you.
And knowing that it’s the right thing to do
Makes goodbye ever slightly easier on everyone.
‘Sure we’ll see each other again, and sure can’t you come over?
You’ll be sick of me Skyping you – sure you won’t miss me at all!’
And other such little comforts.

 And as the green plane takes off into the darkness
Searching once more for the light
You’re proud of what you’ve accomplished
And that you were brave enough
To leave behind this little island
In search of something spectacular –
And not to worry, dear – dreary, dependable old Ireland
Will be the very same when you get back again –
But somehow, you’ll have changed-
All grown up, and just a little bit wiser.