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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.

 

 

New Year, Same Me?

So it’s the end of another year and I’m absolutely exhausted (though that is due in part to the fact that I’ve been fighting the dreaded lurgy for the entire Christmas. Evil, personified – seriously)

I know it sounds a little conceited but I’m sort of proud of my writing performance this year. Okay, so my novel isn’t finished yet but I know I will get there at some stage. I’ve written loads this year. Not just my blog, but short stories, articles and poems and monologues. You can see most of them on this website, and to be fair, I’m proud of them.

The problem is, there’s also lots of things I’ve written for publication that no-one’s seen because I don’t have the courage to show anyone. Sometimes I don’t show people because I don’t want to cause offence. Other times I don’t want to be told that my work is crap and I’ve no business calling myself a writer.

So this year, instead of making the same usual promises of going on a diet, promising to exercise more and all the other lies we tell ourselves to make ourselves feel better, I am going to endeavour to write more, and actually show people what I write. I’m going to send more proposals, set myself up for the world of rejection. Stop protecting myself. I’m also going to  be more true to how I feel and stop holding back in my writing.

I can’t wait to get started. In 2018, obviously. No point in overdoing it either.

 

(As an aside I’d like to thank my fellow By Us With Us team for allowing me to be part of such a unique event. It changed my life and gave me new hope for the future)

 

The Befriender

The Befriender.

 

Daniel was browned off, and rightly so. Here he was, at almost twenty years old, being manipulated by his mother. True, he had reason to be grateful: she could’ve gone to the gardai, and she didn’t. God knows, it had never made much difference before. He smiled as he remembered their neighbour, Sergeant Larry Byrne, coming down to have a ‘friendly chat’ with him, which amounted to ‘ah son, you don’t want to be hanging around with those hooligans now, do you?’ His words had seemed hollow from a man who had an extensive collection of pirated DVDs, confiscated from the Sunday morning Clara market.

I don’t know how she found out anyway, he thought as he pulled on his bootleg cut dark blue Jack-and-Jones jeans. That’s the problem with living somewhere as small as Clara: everyone knew everyone else’s business. He couldn’t even remember where he’d heard that his fourteen year old neighbour Tina Cullen was pregnant, or that Robbie Mills from The Green got done for growing weed in his room. The cornerstones of any tight-knit community, he thought with a pursed smile: sex and drugs. Minus the rock and roll though; there was rarely anything exciting going on. If he could afford it, he’d be out getting mouldy in the Bridge House in Tullamore every weekend. And he certainly wouldn’t be living with his mother.

‘Get down here now!’ came the irritable shout. Daniel lit a cigarette as he sauntered down the stairs, trudging down step by step. He’d hoped she’d calmed down by now. Like everyone in this one-horse town, he thought, all Sandra Reilly cared about was her reputation. Not that it was all that good to begin with: as long as he could remember, Sandra had always been a bit of a player. Daniel would often be left to have awkward morning after conversations, sometimes with strange men, other times with men he knew. The time he had to sit across the breakfast table from his German teacher, Mr O’Toole, was particularly traumatising.

‘What?’ he sulked as he slinked into the kitchen, blowing out smoke.

‘I’ve worked out your punishment,’ Sandra said with a knowing wink. On the table lay a Christmas table centrepiece, comprising of a log with some holly, mistletoe and other greenery stuck into it. ‘You’re going to take this to Mrs. O’Shea down the road.  She has some jobs that need doing. She’s been ever so lonely since that husband of hers died last year.’

‘You can piss off with yourself,’ he retorted, stubbing out his cigarette on the brown ashtray.

‘Fine,’ shrugged Sandra, picking up the phone. ‘I’ll just call the guards then and tell them that I know who broke into Mags Kennedy’s last night, will I? Because I am warning you son, I am this close to washing my hands of you. I won’t have the pigs on my doorstep every night.’

Daniel opened his mouth to say something, then slammed it shut, like a fish. ‘I’ll drop it into her, but then I’m going into town. It’s the twelve pubs tonight. We’re hitting Tullamore.’ He picked up the centrepiece, his wallet and his phone. ‘See you later, ma.’

‘Don’t bother. You’re not coming back until you stop treating this house like a doss house,’ Sandra screeched after him. ‘And don’t think Tom O’Connor is welcome here, neither.’

Now that he was out in the air, he could think more clearly about what he was going to do about his grim financial situation. He hated going to the job club, listening to that Barbara prattle on about interview techniques. He hadn’t heard back from any of the jobs he’d applied for, not even the packing job in Carroll’s meat factory, and the mere thought of sitting at a desk studying all day turned his brain to sludge. All he wanted to do now was throw in this centrepiece and go into town and get locked.

Mrs. O’Shea’s front garden was a tropical jungle of overgrown weeds. She was perceived to be like a modern day Mrs Dubose: cranky and slightly deranged. She hadn’t always been like that: Daniel still remembered how she used to visit his mam every Friday with a homemade apple tart in hand, how the pair of them used to hang out at his front pillar gossiping, how her garden once featured in the garden section of the Midland Tribune. He tentatively stepped over a pile of broken glass before ringing the doorbell, which he couldn’t hear echoing in her hallway.

He knocked loudly on the door, then, sensing an opportunity, cleared some of the decaying greenery from Mrs. O’Shea’s step with his dirty Nike runners and placed the centrepiece down. As he was straightening up, the front door rattled. For fuck’s sake, thought Daniel. No escape now.

‘Linda?’ said a fragile voice. Daniel tried to hide his shock. Mrs O’Shea had once been a stout woman, but now she was angular; her elbow bones almost ripped through her skin, her neck was sagging. Her chest was shapeless in her green and maroon cardigan. ‘Who are you?’

‘It’s Daniel, Mrs O’Shea. You know, Sandra’s boy? She just wanted me to drop…’

‘Come in, come in,’ interrupted Mrs O’Shea, ushering him inside. The hallway smelled musty; the once blue-papered hallway was now yellowed from years of tobacco smoke. There was a faint smell of urine, not fresh. ‘I thought you were Linda, you know,  my befriender? She comes every Wednesday. Lovely girl.’ She fumbled with a cigarette. ‘Excuse the mess. I don’t get visitors often.’

Daniel’s eyes wandered around the unkempt sitting room and noticed a small three foot Christmas tree in the corner, covered primarily in gold tinsel and the odd bauble. He predicted correctly, before he looked up, that there would be a gaudy foil decoration, brightly coloured, stretched from one end of the ceiling to the other. Even though he wasn’t there five minutes, it frightened him how desensitised he was already becoming to the smell, the gloom, the squalor.

‘I just wanted to drop this off,’ he tried again, handing over the centrepiece. ‘I didn’t mean to disturb you… in fact, I…’ He turned to the front door, adjusting his coat.

‘Actually, son,’ Mrs. O’Shea interjected, ‘there’s a light bulb in the kitchen that needs changing. Could you…please? I’ve been sitting in the dark for the last few nights. The spare bulbs are in the press over there.’ She pointed at a brown chipboard press above the kitchen counter, under which rested an enormous empty wine bottle, almost filled to the top with coins and notes.

Daniel nodded and retrieved the bulb, trying to stop himself from gagging with the smell. It smelled like decaying food, human excrement and dried sweat, all at once. Mrs. O’Shea flicked the switch on the kettle and took out two greasy looking cups from the press.

‘Do you take tea?’

‘No thanks,’ Daniel said, flicking the light switch. ‘There, that’s working now.’ He pushed the chair back under the table, pretending that it made the kitchen neater.

‘A cigarette at least? Don’t think that I don’t know what you young lads get up to!’ She wagged her finger at him. ‘Just till Linda comes, please. There’s been no-one here all day.’

‘Where’s your daughter?’ Daniel asked. He wished he hadn’t accepted the cigarette; he could taste the smell of the kitchen when he inhaled. He remembered Lucy from old: she used to babysit him on a Thursday night while his mother was in White’s. She had always been a bit of a suck-up; in fact, she stopped babysitting Daniel because she was convinced he was ‘the spawn of the devil.’

Mrs. O’Shea clinked the teaspoon loudly as she stirred the tea. ‘Oh,’ she said, and then a pause. ‘She doesn’t come to visit me anymore.’

Daniel smelled a rat. ‘What do you mean, she doesn’t visit anymore? I thought she only lived on the Arden Road?’

‘She does.’

‘Then how come? Because obviously, you could use…’ He stopped himself and took a sip out of his tea. He hadn’t seen the woman in years, he had no right to comment on her living conditions.

Mrs O’Shea lit a cigarette, letting out a braying cough as she did. ‘It’s not her fault,’ she said, gazing out the window. ‘It’s mine. I treated her badly… I…’ Another cough, hacking this time. ‘I didn’t mean to…I don’t know what got into me. But the bills, they just piled up so suddenly and, well… I figured she owed me, you know? She moved off to live in her swanky house in Tullamore and I couldn’t afford to… so…’ She shrugged.

‘Oh right,’ said Daniel. He didn’t know what else to say.

‘That’s what that bottle is for, you know. I will pay her back one day before I die, if it kills me. I haven’t bought oil in an age, but this cardigan does just as well. And my stomach can’t handle much more than toast now anyway.’ Another cough. ‘I don’t go around thinking the world owes me something.’ Daniel straightened immediately. Was this a dig at him?

His phone vibrated in his pocket: a message from Vinnie. He and Tom couldn’t afford to go drinking in Tullamore, after all. Or as Vinnie so eloquently put it, ‘we’re fucking broke.’

‘Anyway, I really must head on, so…’ He stood up and ambled towards the hall.

Mrs O’Shea grabbed his arm with her cold, bony hand. ‘Thank you for calling in to see me today. It was so good to have a young’un to talk to.’ When she released it, his arm still tingled. ‘I know I’ve no right to ask, but I don’t suppose you’d call in sometime over Christmas, you and your ma? I’ve lovely mince pies in the freezer.’

‘Of course.’ He moved up the hallway, anxious to embrace the cleanness of the cold December air.

He walked briskly towards the Green, lighting a cigarette mid-walk. When he was a safe distance from Mrs O’Shea’s, he whipped the phone out of his pocket and, holding the cigarette in between his thick lips, smiled as he texted Vinnie back:

‘I know where you can get the money. Meet at mine in ten minutes.’

It’s only fair, he thought. An eye for an eye.

Keeping it Real

Keeping it real

 

Every now and again, random memories come back to me. They come, they go. Sometimes, although they leave me shaken, I find it hard to remember exactly what left me feeling so hollow. They’re like flashes.

Over the last seven and a half years, I’ve had hundreds of these flashes, entirely involuntarily. Some are welcome, others are painful. I was scrolling through Facebook (I seem to do that a lot, don’t I?) when I came across the fact that the universally loved ‘Fairytale of New York’ marks its thirtieth birthday this year on December 15th.

And actually, now that I think about it, I’m thirty-three and I don’t remember a Christmas where somewhere, be it at a party or at a Christmas do, ‘Fairytale’ didn’t prominently feature. I first heard it this year on 25th November in a shop, which can be quite disarming if you’re not expecting it. I know this sounds somewhat ridiculous, so please allow me to explain.

I am seventeen years old, watching my mother in the kitchen (not helping. We were more a hindrance; she had her own way of doing things). She’s making her now infamous ‘twice baked’ spuds for Christmas: scooped out potato skins with a bacon, cheese and onion filling, and veggie ones for my brother. Her homemade centrepiece for Christmas is resting on the table, an impressive arrangement of holly, pine cones and dried orange slices. Her homemade Christmas cards lie addressed on the counter, ready to be delivered to the neighbours.

‘You must love Christmas, mum,’ I remark, in awe of the creativity swimming around me. Mum shrugs.

‘Oh yes, I love doing my bits and pieces,’ she says. ‘But I have to admit, my favourite part of Christmas is Fairytale of New York.’ Now friends, there is nothing more disturbing than hearing your mother, who does her best to be a ‘hip and happenin’ mum’ say that her favourite Christmas song is about a drunk and a druggie prostitute declaring their love for one another. It also, in my teenage mind, ruined any potential for that song to be cool in my head.

She didn’t explain why this was her favourite Christmas song, but in my own head, now that I’m not an immature teenager, I can clearly see why when I think about it. Mum had a rare mix of personalities – creative on the one hand and compassionate on the other. She could see positives in people that no-one else could.

Mum was real. She only wore gold jewellery; she said that silver would look gaudy on her dark skin. She was the only woman I know who had brooches to go with every outfit, even in the noughties. She had a tall, slim figure and often bought her khaki combats from the men’s department. Even though she had watches, necklaces and clip-on earrings to go with every outfit, she only got her ears pierced for the first time in her early forties.

From the outside, you’d be forgiven for thinking she was a modern day Hyacinth Bouquet. She was a natural cook and entertainer. She always dressed respectfully, even going for a coffee.

Fairytale of New York is now half of mum’s age: mum is, or would’ve been, sixty this year. I’ve spent the guts of this year pondering the legacies of now deceased disability activists, so it’s no wonder my mind has wandered to her legacy as well, which are of course my brother,  my two sisters, her beautiful granddaughter and I. The biggest thing she left behind for us is the simple reminder that it’s so important to be yourself.

And boy, did she stay true to that adage!

For example, Mum wasn’t good at driving places she didn’t know, so although she volunteered to drive me to see Trinity when I accepted my offer, she was still a bit nervous. Anyway she found it no problem but didn’t realise (or, as I suspect, chose not to realise) that Trinity’s front gate was not open to vehicles and proceeded to drive through the outside set of wrought-iron gates and wait outside the iconic wooden door that is Trinity’s Front bloody Gate.

‘This isn’t the entrance,’ I hissed at her, sliding down in my seat at the sight of Security coming towards us.

‘We’re in Trinity. I’m not backing out again into oncoming city traffic,’ she hissed back as she rolled down the window. The security officer, who I would have to flirt with in the proceeding years when I forgot the key to my apartment late at night, often with an unsigned male guest in tow, frowned at us.

‘What are you doing? You can’t come through here. Use the Lincoln Place entrance.’

‘I don’t know where that is,’ Said mum. You’re going to have to let us in.’

Later, mum would boast that she was allowed drive through the front gates of Trinity College, just like the president of china but omitted to explain why.

Of course, that is now just a memory. All we have now are memories. When Mum died I resolved to remember her just as she was. I didn’t want to fall into the trap of sentimentality, which would mean missing her more, hurting more. I thought this would make it easier to process my grief.

She was too bloody hard on me, I’d think, remembering the times she’d pushed my (perceived miniscule) abilities to the limit. She didn’t understand me. We weren’t even that close- if we were, she would’ve been more patient. (Amazing the lies we tell ourselves).

I’m twenty-five, an adult in my own right, I thought in the days following her death. She’s done her job. I will be okay.

The next five years would be spent in a sick fantasy where I would go out of my way to prove I was okay, that I wasn’t crumbling inside. No time to grieve – work is hectic! No time to grieve – I’m a mother now!

Eventually, following a mental breakdown, I let things get real again. I allowed myself to be sad and frightened, because being any other way wasn’t going to bring her back. And it was so liberating and shit at the same time, in a way I can’t describe.

The reality is mum should be sixty this year, but she was immortalised at fifty one. And I’m angry and disappointed, but at least I can admit that now.

In a fairytale world we would be running around frantically running around organising her party by now. She would turn up, hating being the centre of attention. We’d have cake, photos, posed smiles. Of course none of that is real.

But the love I have for her is, and always will be, even if it’s a different love than what we had before.

Happy sixtieth Mum – but not to worry, you’ll always be twenty-nine and a bit to me. After all, we make our own realities x

Poem: The Pretender

Let’s pretend
We’re out shopping for your present.
Shall we go for candles, or a gold chain?
(It’s dangerous to put so many candles on a cake)

Let’s pretend
You’re heading out golfing
Wearing your trendy red vest jumper
And your golden golfing brooch
Contrasting wildly with your beautiful brown skin.

Let’s pretend
We’re out in the Court Hotel
Eating knickerbocker glories.
Or at home after polishing off dinner
Eating sticky toffee pavlova,
Just for the moment
Not giving a damn about our teeth.

Let’s pretend
We’re in the KFC drive-thru in Newry –
You’re ordering your usual Chicken Zinger Burger
And you want it so much, you don’t care
If I get sick eating mine in the back of the car.

Let’s pretend
Just for today
That today is just like any other day –
Or at least – how every other day was –
The theme tune for The Bill thudding in the background,
The candles on the mantelpiece creating a ghostly glow.
You dare us to talk. We sit silently,
Not realising how long this silence will last.
I go to bed wearing your old hand-me-downs –
One day, I will have pyjamas of my own
But they will never be as warm,
Or fit me as well.

Let’s pretend
That it doesn’t hurt like hell
That your granddaughter will never know your voice
And that I will never hear her call your name.
I fill the silence that your voice left
With rants and blogs and intense anger
That things can’t be quite the way I want them.

However –
I can no longer pretend,
That today on your sixtieth birthday
I’m not brimming with anger
And that I believe
You’re in a much better place,
And that I don’t want you here
Doing all the ‘normal’ things:
Nagging, laughing, hugging, crying.
Babysitting, falling out with me
And it seems these days I don’t mourn what was
But pine for what can never be:
The fights, the mid-night conversations –
I don’t want either/or, I want both –
Otherwise I’ll be pining for something
That never existed.

And all I want to do is block out the pain
And sit around eating birthday cake,
But somehow,  I suppose
My heart will continue to mend,
You live on in a different guise my friend.
I thought I’d never live without you, that the world would end –
And the pain is still so very real –
Time hasn’t changed how I feel
And as the tears fall I know
That I’ll treasure each precious memory
Until my own life ends.

And is that enough for me?
Well, no, it will never be
But for now, I’ll just say yes and pretend.

 

Cripples In Crisis

Thinking that today was going to be a relatively quiet day, writing-wise, I decided to settle down and watch the documentary ‘Carers in Crisis’ (aired Tuesday 5 December) and mentally pass it off as work. I had previously decided to boycott it because I feel that over the last twelve months, there has been an overemphasis on the heroism of unpaid carers, a narrative that traditionally frames people with disabilities as ‘burdens’.

Words cannot describe how grateful I am that RTE actually approached the documentary in such a sensitive way, in a manner that not only highlights the sheer exhaustion which family carers are currently experiencing, but also emphasises  that Ireland’s charitable approach to the provision of disability services isn’t working, and is not going to work going forward either.

Let’s look at this logically. It’s estimated that there are 200,000 carers in Ireland right now. Two hundred thousand people who, whether willingly or begrudgingly, are caring for a family member who has a disability or is entering old age. Two hundred thousand people who get little recognition from the State for the fact that they have put their lives on hold in order to care for their loved ones. Often, family members, as was portrayed in the documentary, have to carry out tasks such as personal care (toileting, showering), tasks that Carers and Personal Assistants now need a QQI Level 5 qualification in Healthcare Support to perform. I’d wager that many family members have never even heard of this.

There’s no doubt that many carers are drained and, as in the case of Johanne Powell who cares for her severely disabled daughter Siobhan, at the end of their tethers. All of the parents in the documentary were hoping that their dependent children died before them because they don’t trust that the State will provide the care their loved ones need. After all, HIQA has highlighted some inhumane conditions in residential centres across the country.

But one message was particularly clear: the only way the immense and arguably unnecessary burden to family carers is going to be lifted is if we start putting the person with the disability first, something which the Junior Minister with Responsibility for Disability Finian McGrath agrees is vital. However, after meeting him in person I instantly recognised his evasiveness tactic; he continually interrupted Claire Byrne with what seemed to be pre-rehearsed speeches. With respect, after watching him and meeting him last month, I feel that he takes criticism about the status quo for people with disabilities too personally. For example, he pointed out that the respite grant has been restored. He also mentioned that there is now a taskforce working on personalised budgets for people with disabilities.

What concerns me is that his experience of disability comes from being a parent of a child with a disability and while he seems to be a fierce advocate for parents and carers, we need a Minister for Disability who will speak on our behalf. We need someone who genuinely recognises that people with disabilities are tired of constantly having to fight for our rights. We live in a country where the right to residential care was signed into our constitution in 1990, but where people with disabilities have no legal entitlement to a Personal Assistant Service. Having worked in the area of Independent Living for seven years, I am now passionate about spreading the philosophy of Independent Living, not least because having a Personal Assistant is often economically wiser than living in a residential institution. The latter can cost up to €800 per week, according to last night’s show, where having a Personal Assistant coming into a person’s own home might only cost half that.

It is only through striving to protect the rights and dignity of people with disabilities in this country that we will create a better Ireland for everyone, disabled person and carer alike. It’s time to stop pitting disabled people and carers against each other, because unless our country starts providing adequate, person-centred services, there will be no winners in the end.

The Disability Movement is in crisis. We must assert our rights at every given opportunity.

Only we can stop the Movement from moving backwards any further.

 

 

The Repression of Rachel

It was a miserable September afternoon, the 19th if I’m not mistaken, and I was sitting in the Hilton Hotel in Kilmainham with a man I’d only met once before, having coffee in the middle of the day. Sounds sordid, but I assure you it wasn’t. It was purely business. You see, I’d written a monologue and I was due to perform it in the Mansion House at a massive disability event on 23rd September, but something about the piece felt hollow, and so Peter was trying to encourage me to inject a bit of personality into it.

‘Who is this character?’ he demanded as we reread the script, me eyeing him warily. Surely he wasn’t suggesting that my perfectly written script required an overhaul, four days before the bloody event?

‘What do you mean? It’s an everyman-type character.’

‘Well, where’s she from at least?’

I knew the answer to this. ‘She’s from Kinvara. My aunt lives just outside it, in the Burren. What I’ve always found interesting about Kinvara is that it’s in County Galway, kind of on the Clare border. I thought that it’d be a good metaphor for this character, who’s stuck between having a disability and needing services to live independently, and being capable in so many ways too. She’s confused and angry about how society defines her.’

‘And if she were an animal, what would she be?’ he asked. He’s lost it, I thought. Finally I answered:

‘A caged tiger.’

‘And what is it that fuels her anger?’

I composed a perfectly generic answer: ‘The way in with society treats her like an ‘other’ and as I said before, confusion about her place in society.’

Peter wasn’t happy with my answer. ‘Be more specific. What fuels your anger?’ A lump formed in my throat.

‘The way I was treated after my daughter was born.’ As I told Peter the story, my heart broke in the same places it did nearly six years ago when I found myself trying to convince medical ‘experts’ – as well as myself – that I was a capable mother. After I finished, Peter grinned.

‘Now that’s a story worthy of drama.’ I went cold. Was he seriously suggesting I get emotionally naked in front of two hundred people?

He certainly was.

And so, on the 23rd September, I performed a monologue that I had co-written (I don’t normally write in collaboration, but it’s time to open up my mind to new experiences) in front of two hundred people.  And since 3 December marks International Day of People with Disabilities, I thought it would be appropriate to share it with you today.

 

Rachel from Kinvara, by Peter Kearns and Sarah Fitzgerald

(Rachel is sitting in a chair and a woman dressed in a white coat is sticking labels on her – scrounger, handicap, vulnerable, waste-of-space etc)

Go away. I said – go away.

Just five minutes. five minutes – that’s all I ask.

And don’t worry, I won’t forget I’m not ‘normal’

I can’t forget – I’m not allowed to forget – we are never allowed to forget!

Well I wish I could forget you… this horrible pain you’ve inflicted upon me…

But you don’t understand. I tried – I did my best…

Yes – yes I did…

people never get to hear my voice…

You say it’s because ‘they’ – those ‘mainstreamers’ – won’t understand me.

Instead you encourage them to pity me, to try and ‘cure’ me….

I am broken because you have broken me.

You told me that the only way that my life could be better

was if improved, if I made the effort…

You promised me if my impairment were cured, that I could have everything…

I did the exercises  – stretched on the hard, sticky medicine ball and I endured your prodding and poking, cutting me open  and sewing me back together and – Look at me!

What do you see when you look at me?!

I don’t know how you look people in the eye…

Convince them that you know what’s best for me…

Convince me -and them – I know nothing about running my own life…

Will you be the one to bend down and kiss me on the cheek

And stick me into a Galway or Clare nursing home

Take me out to your AGM – that once a year ‘thing’ that makes you feel good

And then store me away like normies store their Christmas decorations in the attic –

Never to be seen from one end of the year to the next?

Am I starting to sound like a broken record?

Normies think that it’s okay that I have to give twenty four hours’ notice before using public transport?

That I would rather laze around on benefits than contribute to society?

Loads – I’ve shitloads – Loads to say… but hey…

It’s easier to believe I’m a freeloading scrounger rather than someone, who could be… someone….

Actually I am someone. Seven years ago I became a wife and two years later I became a mother. But you couldn’t let me have that, could you?

Don’t pretend you don’t know what I’m talking about.

You told me that I would be a danger to my own baby.

And… even after doing all the ‘normal’ things – the Leaving Cert – battling access in an inaccessible college – being a wobbly yummy mummy was taking that mainstreaming that little bit too far.

I caught you spying on me while I struggled in the playground with those shitty nappies, staring while I tried to breastfeed – your stares dried up my milk, your judgement lessened my embraces.

I felt worthless, damaged. For a long time you led me to  believe I was not a proper  mother.

Do you know how good it feels to have proven you wrong?

And how degrading it was to have to do it in the first place?

I have a daughter, she calls me mummy

I care for her, not the other way round. Of all the labels you’ve placed on me, it’s my label – my favourite.

She is my proudest achievement – my legacy.

And you won’t ever be able to take that from me – would you – could you?

So here I am… in Kinvara… neither Galway nor Clare… neither specialised nor mainstreamed – literally ‘idir eatha’ as the mystics would say, ‘between worlds’ – the hard world of your anxious clinical society and a place I know in myself, in the unfolding mystery of my daughter…

… and her name is… (lights down)

 

 

 

 

 

 

 

 

 

Fight, Fight, Fight

Before they cut the cord,
They shake their heads and say
That having a ‘child like that’ won’t be easy
And probably won’t live very long anyway
(Well one must hope).
Because, heaven forbid
This child is a drain on our resources,
A
nd if it survives it faces a lifetime of pain
And completing meaningless little courses,
The kind that would never get you a job
Beyond stacking shelves in Aldi,
He may never talk and never walk
Or go to school, or get married.
But those little voice inside your parents shouts with all their might,
‘You don’t know what you’re on about. We will fight, fight, fight.’

*

You dodge the bullet of special education
Thanks to your parents’ begging and tears,
You work and work to prove yourself –
Much harder than your peers.

You’re told to ignore the insults:
Spastic, rehab, handicap,
They don’t know what they’re saying
And it would be rude to fight back.
‘Oh aren’t you an inspiration?’
They say when you achieve
Enough points in your Leaving Cert
To grant you the reprieve
From languishing in a day care centre
And instead you are lucky enough
To study in University just like you always dreamed.

Suddenly you’re equal. It’s too good to be true
And people are sitting up and listening to you.
After all these years they realise
You have something of worth to say,
You’re finally taken seriously!
Nothing can get in your way!
Then BAM! You are spat back out
And put back in your place
When you leave third level education
And fall right on your face.
What makes you feel so special
And worthy of a job
When you walk like an old drunk
And dribble like a slob?
College has given you notions
That simply will not do!
But don’t worry – there’s lots of Jobbridge courses
For people just like you.
But the niggling voice inside is saying ‘This simply isn’t right.
I want so much better. I will fight, fight, fight.’

****

And so I don the armour
And pick up the heavy sword
To follow in the footsteps
Of activists gone before.

Ignoring the voices of normies
Telling me that I’m an ingrate
Don’t I know I would be dead but
For the mercy of this state?
But I don’t feel their compassion,
Just a weight upon my heart –
I just want to fix the world
But I don’t know where to start.
A world where I need not give notice
To travel on a train
A world where I don’t have to beg for my rights
Time and time again.
And those who once paved the way for us
Are dying, one by one –
Dying fighting a battle
That they have never won.
The workload is increasing
And people start to look to me
For little nuggets of wisdom.
‘What shall we do? Will we ever see
This so-called progress that’s meant to be
Happening in Ireland right now?’
I can’t answer, I don’t know how.

And I plaster on a smile
And blog about something deep,
Knowing that they don’t know
I sometimes cry before I sleep.
You can’t show ‘them’ your weakness –
They’ll feast on that like cake –
So you simply be persistent until you
Wonder how much more you can take.

You hope your messages are seeping through,
Although you never are quite sure,
When people say they understand,
Then refuse to ramp a door.
You start to become repetitive,
Repeat, repeat, repeat.
And suddenly you’re that annoying crip
That people cross the street
To avoid.

And you smile inside
Because in your heart you hope
That it’s getting harder to hide
From the grim reality facing people in Ireland today.

*

Sometimes it feels that we’re getting nowhere
And no-one hears our plight,
But we owe it to our children
To stick up for what is right.
And they might have to do the same
Which should be to this country’s shame,
But in every single disabled person’s name
We have no choice
But to suck it up
(because Ireland’s fucked it up)
And continue
To fight, fight, fight.

Kind Gestures

Kind Gestures

It’s amazing what meaningless rubbish you can learn just in mindlessly scrolling through social media. For example, did you know that International Kindness Day is marked on 13th November each year?

Reading this got me thinking about the busy week I had last week. Last Thursday, 9th November last, a delegation of people with disabilities including myself went to meet the Junior Minister with Responsibility for Disability, Mr Finian McGrath in Dail Eireann. The main reason that the meeting was requested by Clare activist Ann-Marie Flanagan was because Ireland is the last country in the EU to ratify the United Nations Convention on the Rights of People with Disabilities. Frankly, the meeting was a farce. Minister McGrath seemed distracted throughout the meeting, and while he could sympathise with the reality of our lives, we felt he could not empathise with our fears. He constantly interrupted us, and we left the meeting feeling that we’d been heard but not listened to.

Reader, I cried on the train back to Tullamore, the train I’d given twenty-four advance notice to travel on. Onlookers asked me if I was okay, and I simply nodded. How could I possibly explain how alone I felt in that moment, the feeling of knowing that deep down the Minister who represented my needs and so many others’ needs at government level had no perception of how difficult it is to be disabled in  Ireland today? I say this with the assumption that if he knew our frustrations, he wouldn’t have been so evasive in his answers. He would’ve assured us that our rights were on the way to being recognised. If the Minister can’t reassure us, then who can?

On Friday, I needed a change of scenery and so I eagerly accepted the invitation of an old college friend to meet for coffee in Lemon on Dawson Street in Dublin. To my delight, the conversation came easy, just as it had ten years ago when I saw her last. We caught up over two pancakes each, and I realised that I’d missed debating the meaning of life with her.

‘So, what have you been up to?’ she asked over the hum of students talking. I told her that I’d had the meeting with Minister McGrath and that I felt I’d wasted my time. ‘You know,’ she said thoughtfully, chewing her omelette, ‘I’ve lived in France and what I’ve noticed is that they don’t really have the concept of kindness there, the way they do here. People are kind here.’

‘Which is a lovely thing,’ I replied. ‘Where would we be if it weren’t for kindness?’

‘Oh, it is,’ she continued, ‘but in France, things are more rights-based. Everyone knows – and gets – what they’re entitled to. It’s not perfect, it’s just…different to here.’

That got me thinking. I don’t know much about French culture, but I’m familiar with Irish culture, and my friend is absolutely right – we are,  as a nation, very kind. The problem is that we depend on kindness and charitableness as a substitute for our rights, and particularly for people with disabilities, this can be problematic. Because of a lack of proper funding in the disability sector disability organisations, for example, the Irish Wheelchair Association, put much time and energy into fundraising. In order for fundraising to be in any way lucrative, people with disabilities are forced to portray themselves as vulnerable, almost desperate. And unfortunately, it’s not a lie. Because of massive gaps in government funding, we are vulnerable and desperate.

However, the CRC and Rehabcare scandals were only examples of why organisations should not rely on charitable donations to fund their services going into the future.  Money is going into inflated salaries rather than direct service provision. Meanwhile, essential services are being cut. On the other side of the coin you have many people with disabilities in hospital beds, costing the State thousands a year, when that money would be better spend moving people into their own homes, providing a Personal Assistant Service and enabling these people, regardless of their disability, to realise their potential.

In our meeting with Minister McGrath last Thursday, we shared some painful experiences with him, to illustrate how a lack of a rights based approach is denying thousands of disabled people across Ireland the opportunity to contribute to society. We urged him to help us to change the narrative of disability from one of victimisation to empowerment.

Finally, when we tried to extract a timeline from him of when the UNCRPD would be ratified, he refused to commit to one, saying that he’d done this last year, ‘and got burnt.’ He wasn’t going to make promises he couldn’t keep, he said.

Even when Ireland does eventually ratify the Convention, our rights as people with disabilities will still be in question.

However, we should do it regardless, not out of kindness, but because it’s the right thing to do.

Kindness is lovely, but it isn’t enough. We as people with disabilities need – and deserve – more than this.

 

Do I Have a Choice?

What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.