Poem: Proud

                                                                Proud

Nine years of birthdays with no candles on a cake,
Watching seasons come and go,
The days dragged, but the years flew.
And here I sit once again, with no gifts, no smiles, no hugs
and nothing new to say,
Unless you count saying ‘I miss you’
in a completely different way.

But this year, as well as the usual
Memories that make me smile,
My mind wanders to the fact
We haven’t spoken in a while.
and I need some validation,
to hear you say the answers out loud:
What do you think of me,
Do I make you proud?

I know that when I share this poem
People will say ‘of course!
How could you ever think otherwise?’
And they’ll say it ‘til they’re hoarse.
But you know I’m a cynic –
I never believe until I see –
And to be honest, the fact I’ll never know
Has really been bothering me.

Because I know I wasn’t easy:
At times, I had to be pushed,
Sometimes I was lazy,
And others, far too rushed.
I remember you there goading me,
Telling me to do my best,
and as I got older
Begging me to take some rest.

Then I look at my daughter,
Your grandchild, brave and strong,
and I realise, for all my mistakes,
She’s the one thing I didn’t get wrong.
And when she looks into my eyes
and says ‘Mum, are you proud of me?’
I realise that the answer
Will ever only one thing be.

And this brings some consolation
at this desolate time of year,
A hope that you’re looking down on me
With a smile from ear to ear.
Because though I cannot know for sure
Or hear it said out loud,
I hope you know I try my best,
and I hope that you are proud.

Happy birthday xxx

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Riding on my bike

‘Hello?’

‘Hello, I was just wondering if…’

‘Sarah, your trike isn’t ready yet. We’re still working on it. We’ll call you, promise.’

I felt unreasonable for ringing for the third time this week about a tricycle that up until a week ago, was slowly rusting in my shed. Alison has started cycling in the evenings, and watching her has stirred a hunger in me. Lately, I’ve been feeling a bit rubbish in myself. and I asked myself what made me feel better when I was younger. And the answer was a good, long cycle. It was a time when I was independent, not reliant on others. Free.

I could be getting my dates wrong, so forgive me, but I think it was Christmas 1992 that Santa got me the two things I’d asked for: Matilda by Roald Dahl and a bike. It was a lovely bike, red and white with black stabilisers and a carrier on the back. I couldn’t wait to try it. After the initial excitement of Christmas was over, we brought it down the conservatory steps and I hopped on. I hadn’t cycled six feet when I fell off. Undeterred, I tried again. And again. And again. It wasn’t working.

‘I don’t understand,’ I moaned. ‘It has stabilisers. Why do I keep falling off?’ Truth be known, I think my parents were disappointed as well. We had overcome so many obstacles and barriers and here was one that seemed insurmountable. Perhaps riding a bike was beyond possible for me.

The following summer I was sent for my annual ‘holiday’ in Clochan House. It was as much a break for my parents as it was for me, and it was a thinly disguised regime of physio, occupational and speech therapy. It was also a chance to make friends and have a bit of a laugh without having to answer ten million awkward questions about my disability. That was the week that Dorothy Oakley, possibly the best physio that ever lived, introduced me to the secret lives of the tricycle users.

‘Want to try one?’ she asked with a twinkle in her eye.  Half an hour later, she was panting trying to keep up with me in the hospital car park, ‘Slow down, I can’t keep up!’ I was in love. I knew that, from that moment on, my life would be very different.

Fast forward six months to Boxing Day. ‘Just got a phone call off Santa,’ my dad announced that morning. ‘There’s been a mix-up with one of your presents. The silly sod left it in Cummins’ shed!’

Bewildered, we wandered across the road where my neighbours opened their shed to reveal a red tricycle! Even then I was smart enough to know this wasn’t the work of Santa but rather of my parents pushing the Health board for months beforehand. Up to that point it was the happiest day of my life. Despite the fact that it was freezing outside, I spent the remainder of the Christmas holidays cycling around our patio, imagining I was in the Tour de France. I used it as a ‘taxi’ for my little sisters, who hopped on the bar above the back wheels and held onto the back of my seat. When I started school in the Sacred Heart, I insisted on cycling to school, hanging the bag on the back. I think my parents drove me to school a total of six times in as many years; I even cycled in snow, such was how precious the independence was to me.

By the time I’d finished second year in 1999, my knees were jutting out over the handlebars, but there was no way I was surrendering my independence. I became wary when my dad started to refer to it as a ‘skittery aul’ bike’ but what was the alternative? There was no way I was going to allow Mum and Dad to drop me to school. One July evening, my dad and Uncle Charlie arrived home in a van. It was 10.30 and the sun was rapidly melting in the sky.

Dad called me. ‘Come out here please.’

I was trying to think of what I’d done wrong when the sight of the most beautiful contraption knocked the breath out of me. It was a majestic navy tricycle, with gears and a basket twice the size of the wire ones in supermarkets. I was in love, however, when I cycled it down the road, I was petrified. It was too big, too fast, and I was sure it would be the cause of my untimely demise.

‘I’ll stick with the red one’ I said, nursing the poppy bruise on my shin.

Needless to say, I did not stick with the red one, and why would I? I could carry my sisters in the basket (Or I did until one of the neighbourhood lads asked to be carried in the basket  and buckled the wheel). It took me exactly four minutes to get from our house in Whitehall to the Sacred Heart, which meant that I was often still eating at half eight. I did my Christmas shopping every year on my trike. I hung around Whitehall for hours talking, delighted to have the energy to do so. It soon became my trademark, which beats being a poor, defenceless little cripple.

Unfortunately, when I was in second year in college the tricycle got stolen from our house in Tullamore, and despite gardai reports and appeals on the radio, it was never recovered. I still mourn its loss, but it wasn’t suitable to bring to Dublin. Once I moved back to the Midlands, however, I began to miss it. I moved to Portlaoise in 2007, and ended up staying at home most of the time. I had an old wheelchair but I still missed the trike.

Then a miracle happened, at just the right time: in 2009, a month after mum passed away, I was granted funding for a new trike. This couldn’t have happened at a better time; I had started moping around and hiding away. I started cycling to do our shopping, started spending afternoons in the library, cycling around the park. Our tenure in Portlaoise came to an abrupt end after I was followed home from Caffe Latte in Lyster Square to our house on Harpurs’ Lane in March 2010. This guy, I later found out, was highly dangerous. As I fled from him that day, I glanced at my speedometer – I was cycling at 16mph, and he still caught me. I would’ve had no chance in a wheelchair, I don’t  think.

My trike was instrumental in organising our wedding, collecting bits and bobs – I even brought my wedding dress to be dry-cleaned afterwards on it. It kept me fit until I got pregnant, and sadly after that I struggled to find the energy to get back cycling, until now.

I’m hoping that cycling will improve my physical and mental health, but I’m also looking forward to reclaiming something that makes me ‘me’. I’m looking forward to cycling with Ali and showing her that there’s always more than one way of doing things, if you’re willing to think outside the box.

Rebel Girls

My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.

 

Birth Day (Poem)

At eight minutes to midday,
On a sterile, cold operating table
Happiness was born.
She weighed eight pounds four ounces.
She was strong,
But her mother was saggy, deflated.
My breasts throbbed with the heaviness of milk
Ready for the taking.
They sewed me back together,
But alas, they knew
They couldn’t fix me.


I curled around my newborn cherub
Like a lizard around her precious eggs,
Sneaking peeks at the round blue eyes
And the perfectly pink skin.

Nothing made me so frightened
Than my beautiful, breakable china doll.
I’d broken so many cups, glasses, plates –
But this was something that really mattered.
How I wished I could bubble-wrap you,
Shield you from my imperfections,
Preserve you as you were.

And all that time spent worrying –
Baby talk and weaning all a blur –
And for what? To prove myself? Ha!
All that matters is that you love me
And that I truly believe I am good enough.

Worthy of the princess
Whose hand feels so soft on my cheek,
Who strokes my eyebrow when she is worried,
Who pulls me so close after her bedtime story
That our breaths fuse in the half-darkness

I know people watch us, comment and stare
And shake their heads, but honestly, my darling
I don’t care.

They tried to destroy what we had and now
I say no more, enough.
I wasn’t put on earth to prove them wrong
But rather to love you,
And as every year goes by, be assured
That I love you more than life itself,
Than all the stars and oceans,
Even more than chocolate.

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.

 

 

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.

 

Unsocial Media?

I’m in writing mode now. But ten minutes ago I was flitting mindlessly around Twitter and Facebook, seeing what was happening in the world. You don’t need to tell me this is a waste of my time, of course I know that. By ‘waste of my time’ I naturally mean ‘waste of my writing time.’

A few months ago, I felt so guilty about the length of time I was spending on social media that I deleted both my Twitter and Facebook accounts. I think this lasted all of one day before I panicked and reinstated them. It’s sort of disturbing to know that ‘do you want to permanently delete your account?’ doesn’t actually mean what you’d think it would, as even after choosing this option your account can be restored.

It’s depressing how social media owns us. We all know how sharing pictures of our kids and our houses and our beautiful pets can make us look needy, narcissistic and fake. Who hasn’t been scrolling through their Facebook or Twitter feed at one stage or another and thought, ‘oh my God, this is a pile of rubbish, why am I still on social media?’

We’re told that social media is ruining the ability of people to make real-life friendships and conversations. Well, I’m sorry, but social media is not the sole scapegoat for people being lonely. I’m sure I’m not the only one who doesn’t live in the same town as any of my family members. For many of us, it’s not a case of going up the road for a quiet natter with family or friends (I have one close friend living in town at the moment). People are out living their own lives in every corner of the world, and it’s social media that is keeping them all connected.

Social media has helped me in three areas of my life: as a mother, a writer and a person with a disability. When Ali was born, my friend added me to some wonderful parenting groups where clueless first time parents like me were asking questions about parenthood. Often I don’t comment: instead I ‘lurk’, nodding silently in agreement with other mums. In fact it was another mother’s open admission on Facebook that she was struggling with PND that ultimately motivated me to get the help I needed, take care of myself and write a blog about it. Knowing that I was not alone really helped. I also joined a reflux survivors’ page when Ali had reflux and seeing other parents come out the other side really gave me hope during this difficult time.

As a writer, being present on social media can be both rewarding and tiring. I’m still trying to find the balance between suave self-promotion and being interesting without just being plain annoying. In terms of rounding up an audience for my blog, I’ve found Twitter to be especially useful. Like most Twitter users, I haven’t a  clue who half of my followers are, but some have proven to be really useful contacts. For example I met a lady on Twitter who helped me find some secondary reading for writing my novel. I met another lady who’s teaching me about chocolate and making material accessible for the visually impaired.

Finally, social media is opening up the world for so many people with disabilities right now. Whereas before peer support mainly involved occasional meetings or coffee mornings, people with disabilities can now communicate with each other on a daily basis. This is so important given that there are nearly three thousand people with disabilities living in inappropriate nursing homes or hospitals and thousands more, be it through lack of transport or Personal Assistance, trapped in their own homes. Social media is becoming an increasingly popular tool for PWD challenging injustice in their everyday lives, and as a result, our stories are being highlighted by mainstream sources including local and national newspapers. People who were once voiceless are now becoming very vocal, all from the comfort of their own homes. The inability to get out does not necessarily mean the inability to participate, to count, and to matter.

So although I should probably curtail my time skulking around on Facebook and Twitter, I’m not ashamed to acknowledge that social media has helped me become a better mother, a more conscientious writer and a fiercer activist. I’m so grateful to be part of a virtual community that accepts and helps me. It certainly doesn’t beat face-to-face contact but it does make the world that little bit more accessible. Not just for people with disabilities, but for everyone.

 

Ps. If you enjoyed this blog, ‘like’ and ‘share’. Joking!

Pps. Well, half-joking anyway

Legacies

Today, as my husband slinked into the sitting room to eat his dinner in peace, something unusual happened. Within thirty seconds he’d come back out into the kitchen and said in a casual tone certainly unfitting to the matter at hand, ‘There’s a bird flying around the sitting room.’

I closed my eyes as I imagined our black leather couch now covered in those trademark yellow and white stains. ‘You’re not bloody serious?’

‘Afraid so. We shouldn’t have left the front door open.’

Now, if you asked me if I was afraid of birds, I’d normally say no. But you’d need to contextualise. For example, I have no problem watching autumn migrations or gatherings of birds in the garden. Hell, because my daughter is a nature fanatic, I often have to follow them around the park, driving my wheelchair as slowly as possible so that it doesn’t ‘click’ and frighten them away. But the thought of one trapped in our sitting room, flying frantically, trying to escape, filled me with trepidation.

Walking softly towards the sitting room I peered in to see a little robin, with a fiercely red breast, casually exploring our sitting room. My husband and I looked at each other and smiled slightly, and I recognised something in him I wasn’t expecting, a softness. Normally, we would both be sort of like get that bird out of our sitting room before he shites everywhere, but this was different.  It felt like a presence, like an unexpected but welcome visitor. One of our mothers, perhaps, or Maisie, my mum’s friend who, before she closed her eyes for the last time just two months ago, gave me a green card with a little redbreast robin on it. The card simply read Thinking of You.

‘We have to guide him out, before he has a heart attack,’ my husband finally conceded, before gently herding him towards the front door and closing it.

For the superstitious among you, I’m sure you know that a robin is meant to represent a loved one since passed, and its presence symbolises that he/she is thinking of you, that he or she is near. For me, however, robins represent childhood innocence, dependability. Growing up, we had a conservatory at home and one morning, a little robin hopped in through the open doors while we all watched silently. He explored a little, he sang and he left. Soon, that same robin (or so we liked to think at least) came back every morning, let himself into the conservatory and made himself at home. It became routine, a ritual, and when I saw that robin this evening I was instantly reminded of it.

That association with robins is a legacy left to me by my parents. It’s funny how, even though that era is now gone, I remember not so much the robin, but how I felt when we all saw it for the first time, over twenty years ago. The wonder. The quiet respect.

I’ve been thinking about legacies lately, not least because on Saturday, over two hundred activists will come together in Mansion House to remember the influence that disability activists, both past and present, have had over our lives. That space will allow us to reflect on the achievements of the past, and to be thankful for what has been achieved in the name of people with disabilities thus far. But it’s also an acknowledgement that once Saturday’s event is over, we need to continue looking forward, keep striving towards true equality, ensure that our voices are always heard.

Like the robin from my childhood, some of us thought that these people were invincible, that no matter what, they would always be there. My memories of those who I will be remembering on Saturday are sometimes the only fuel that keeps me involved in activism. Sooner or later, we are going to have to look at the future, and it can be scary when someone we looked up to, be that a parent or sibling in the literal or figurative sense, is no longer here to guide us.

When it seems that all the greatness of the world is slowly disappearing, will we be able to find the courage to look within ourselves. to see what we can offer? And if we can’t trust ourselves to do this, who can we trust to educate our legacies to our children? That’s why we need to tell them about the past, the robin. We all need to know where we came from.

And sometimes we need a reminder, so that we may create meaningful legacies for them. We need to remember the past, not to live in it, but rather to use it as a blueprint to make our own mark in history.

 

 

 

 

 

School lessons

So, Alison is back to school on Wednesday. I know not every parent will agree with me but I for one cannot work out where that summer went.

Kids have a tendency to surprise you, though. Just this morning Alison had expressed trepidation about going into Senior Infants. ‘The work will be too hard,’ she moaned at me while I scoffed at her. Ten minutes later she had orally completed the first twelve pages of her new Phonics workbook. With Alison, I’d be more concerned about her getting bored than struggling. If she were to get bored, she’d lose interest and thus would begin the descent of a slippery slope into delinquency and mischievousness.

I suppose I’m still aghast at how much she’s learned in the last year.  Her reading skills are better than mine were at her age (it pains me to admit this), and she spent the summer doing Tullamore library’s Summer Reading Challenge. (This is where kids are challenged to read ten books over the summer. She read forty, easily). She’s retained most of her Irish and has been randomly coming out with statements such as ‘Six plus five is eleven’.

So she’s doing well which is a relief, because I had concerns about her starting at just four and a half. But of course academia, mathematical prowess and literary genius is not the be-all-and-end all either.

As the daughter of a wobbly mummy, Alison has learned that it’s good to ask questions about disability, and boy does she!! ‘How come you could walk before without a walker, but not now?’ ‘Why do you use  a wheelchair when you can walk?’ ‘How come these footpaths are not ramped? That’s very dangerous.’ I’m raising a mini activist. Together we are becoming a force to be reckoned with.

In addition, Alison has learned to deal with having a sort of celebrity mummy. If she thinks people are asking too many questions, she’ll change the subject with a kind of ‘who cares about that auld has-been in the wheelchair’ attitude. It’s so normal to her that she can’t work out what all the fuss is about. I used to worry that my disability would drive away some of her friends, but actually I’ve established a rapport with them all and subsequently lost my wondrous tinge.

I’d also consider her to be kind. I’ve tried to teach her empathy, sort of ‘how would you feel if’ scenarios. She can identify if people are being unkind to each other and she tries to include people. Sure, she’s not perfect, and if she’s part of a clique she’ll get caught up in it. But she also knows when she’s in the wrong – she’ll look at me with her big blue eyes that say, ‘sorry mum, please don’t give out, I love you!’

And what have I learned? I’ve learned that there’s more to being a mum than the ability to run around after your child. I’ve learned that I am in fact not an alien and am just the same as other mums. This year, I’ve made the nicest mum friends whom I love chatting to and I no longer have any qualms about asking them to help me out with lifts to birthday parties. I’ve learned how to let go and share my hilarious parenting fails with them instead of constantly being worried that they will judge me as a parent or report me to social services!

I’ve learned to enjoy motherhood – I mean, really enjoy it. I’ve learned to love myself, and take care of myself. Whereas before I felt like a fraud, I now know that Alison and I mean the world to each other.

And isn’t that the most important lesson of all?

 

 

D-Day

It’s the first day of the Leaving Cert exams, and I can’t stop thinking about my godchild, whose christening I remember as if it were yesterday, going in to sit what she’s been told are the most important exams of her life.

I was listening to the radio yesterday (not sure who – Matt Cooper, perhaps?) who was talking to students on air and generally saying listen – the Leaving Cert is important, but not that important. Study, but don’t stress. It’s not the end of the world. The Leaving Cert is not the be-all and end-all.

That’s certainly not the impression I somehow got when I did my Leaving Cert, fourteen years ago. I did Transition Year the year before, and I had been on a respite break with seven other friends with disabilities during that year (incidentally, that’s where I met my husband). The message I got from that week was that the best prospects for disabled people was in doing a computer course or going to the National Learning Network to do an endless string of courses in job preparation. Has my journey through mainstream education been a waste of time? I thought glumly. Now don’t misunderstand me, or interpret my reaction to be borderline snobbery, but I was afraid that society was trying to mould me into something I wasn’t. These courses are great, but I do think that students with disabilities should feel that anything is possible.

So, as a statement against the status quo, and because I wanted full control over my future, I decided that the only way I was ever going to do this was to get 500+ points in my Leaving Cert (yes, I am a little mentally unstable-how did you guess?) For nearly two years, I threw myself into my studies. I don’t know how I still had friends at the end of it because I never went out to the Harriers or the Bridge House. I don’t exaggerate when I say I spent a solid six hours after school, studying. Soon I became obsessed. If I was going to spend the time studying, I had to be the best. If I got 75% or less in a class test I would openly bawl my eyes out.

I remember my dad saying to me about a month before the exams that if I didn’t slow down, I would have a massive heart attack and be dead before the Leaving came around. He was so worried that he threatened to stop me sitting them altogether. I looked at him incredulously! What did he know? How could he possibly understand how it felt to be the only person in my year with a (visible) disability and so much to prove? Didn’t he know how important these exams were to my future?

No, and he didn’t care. Neither did mum. What they did care about was the fact that I had no friends apart from John Paul, about the fact that I couldn’t relax, or take an evening off study without having a massive panic attack, about the fact that at 12 o’clock they would walk past my room on the way to bed to find me still studying, my books sprawled all over my bed and me panicking because I couldn’t memorise that Irish poem or the ins and outs of the heart in spite of studying all evening, probably on little or no food and definitely no rest (food and rest is for the weak, yo.)

And yet, it paid off. I got enough points (bang-on enough) to get into Trinity to study English (the DARE scheme may have helped a little). The relief was immense; it took a long  time to get used to not stressing out over the Leaving. And just when I became accustomed to calmness, I had my dissertation and exams to worry about! I really wanted an Honours Degree, and I did study just as hard (albeit in the final few months!) and it paid off…

…and now I am a writer, spending day after day writing and researching, blogging and editing. Did I need a good Leaving Cert to do this? Was it worth the hardship? Personally, in spite of the hellish experience that was my Leaving Cert, I don’t think it’s fair or right at this point to be dismissive of its importance. How can teachers, parents, society think it’s okay to spend two years of a student’s life drumming into students that this is the most important exam they’ll ever sit, and then turn around afterwards and say that it wasn’t that important?

Yes, it’s true, no-one ever asks how many points you got twelve months later or (unless you’re an Irish teacher) you’re never asked about the main themes of A Thig Na Tit Orm. And yes, many of us do want our children to have a strong work ethic, but at what cost? Why are we still sending out the message that your worth as a person is based on one set of examinations, and lying to our young people, saying that it could shape your future for the worst or the best?

Because I’ll let you in on a dirty secret: your worth is not how many points you get. It’s how you use your talents to shape the future, be that through medicine, teaching or volunteering to help others. And guess what? Learning is fun – it’s true! I don’t mean school – I mean the learning you choose to do. I’ve done three correspondence courses so far and it wasn’t about the marks, it was about accomplishing little challenges. I loved them and can’t wait to do more.

So do your best in your exams, and spend the summer doing some proper learning. Learn how to cook, how to use the washing machine, how to budget. How to get a week’s worth of groceries for €25 so you can go out on a Thursday night. Meet new people and learn how to tolerate their quirks and annoying habits.

There are no grades, but these are lessons you won’t forget.

And Caoimhe, best of luck. No matter how these exams go, never forget that you are a kind and wonderful person and we all love you so, so much xx