Say Nothing (Poem)

(To mark World Mental Health Day, 10/10/2018. Apologies for the corniness – I bashed it out over lunch)

I have this voice inside my head
That often drags me down,
And nothing I can say to it can make the bastard drown.
It tells me that I’m ugly, useless, a waste of space
And worst of all that I’m alone in everything I face.

See, people have bigger problems:
Some people don’t have homes –
Others burdened by their mortgages
Or living on their own.
Some are trapped by violent partners
Others will have no tea.
I live a life of privilege that
This isn’t happening to me.

I couldn’t tell my friends or family –
I couldn’t bear the shame
Of having that stigma of ‘attention seeker’
Attached to my name.
They’ll think that I’m a nutcase
or that I need to take some pills.
I might be told ‘snap out of it’
Or that I’m not really ill.

And so I will say nothing,
Until one day when I wake
I decide that I’ve had as much
Torture as I can take.
What started as a grey cloud
Has turned into a storm
And I can see no way out…

Or maybe… just maybe…
A chink of light will shine through,
When I pluck up the courage
To turn and say to you:
‘I really don’t feel like myself,
I don’t think I’m okay.
I just need you to hold my hand.
I don’t know what else to do or say.’

Because, you see, I could say nothing
And no-one would’ve said
That there’s a bomb about to explode
Inside my messed up head.
The agony is tangible, it eats me up inside.
But I know you cannot help me if I proceed to hide.

And so, I must say something
If only so you know
That if you ever, ever feel the same
I need you to tell me so.
Because silence is a killer,
And pride keeps us apart –
And though the sentiments of this poem seem ‘corny’,
I mean them with all my heart.

One last thought, and then I’ll say goodbye:
There’s often more to things than meets the eye:
Smiles don’t always mean joy, laughter can hide sorrow,
So check in on those you love – don’t leave it til tomorrow.

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An Open Letter to Taoiseach Leo Varadkar

From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).

An open letter to An Taoiseach, Mr Leo Varadkar,

Dear Mr Varadkar,

I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.

Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.

Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.

In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.

As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.

Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.

I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.

I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.

And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.

Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.

Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.

You owe it to us, our families and our children, to enable us to live the best lives possible.

Yours, etc.

Sarah Fitzgerald

Poem: Autumn

Autumn is more than a season.
It’s the feeling
Of the world falling down around you –
Yellow and reds:
Heaven and hell.
The closure of warmth,
The fug of turf fires,
A subtle breeze biting your skin,
A familiar darkness closing in.

It’s the season of horror
and hiding behind masks –
A chill leaks into your soul
as you look around
at what is lost.
The silenced children’s voices
now hide behind closed curtains,
Their once glowing faces now white
From the glow of their screens.

Trees sway, unconfident in their nakedness,
Their once plentiful garb strewn to the ground.
Desolate, they wait patiently
For longer days
And a hint of sun.

And so, we go about our days,
Our houses and cars lit to fight the darkness,
Waiting until we see that first green bud
On the old, dependable sycamore tree.

Sarah Fitzgerald, 02/10/2018