Category Archives: health issues

Go Easy

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I’ve grown up a bit since starting this blog. A few short years ago, when I wrote a blog for mum’s birthday, I mentioned my disappointment in failing to secure Adele tickets. I knew every word to her new album 25. But oh, how priorities change! Although my daughter is almost ten, I’m not as time-rich as I’d envisioned. I still have to parent, albeit it has become easier physically (though trickier emotionally – the joys of parenting a preteen, what with monitoring screen-time and conversations that turn into mini-debates). I’ve been so busy that I haven’t even had time to listen to Adele’s new album, but I’ve heard “Easy on Me” and it’s definitely a message that I want to scream at the top of my lungs.

World, go easy on me. No, that’s not what I want to say. I want to say: Sarah, go easy on yourself.

Almost twenty-two months. It’s been almost twenty-two months since the “old normal” disappeared overnight. The end of February will mark two years since Covid19 reached us here in Ireland. None of us could have imagined how much would change between then and now.

We were resilient then. We were prepared to do whatever we had to in order to curb the spread of this new virus. We stayed at home and worked in our pyjamas. We homeschooled the kids, against all of our wills. This was only going to be for two weeks, to flatten the curve, we were told (but nobody believed this). Our children saw out the end of the 2019/2020 school year at the kitchen table. On the day that the first lockdown was announced, our daughter had just brought back into school her consent form for her school tour, an indication that none of us really foresaw what was about to happen. On Sunday 8th March 2020, I stood in the Church at a pre-First Communion mass with a group of parent friends, speculating about this virus that we assumed was millions of miles away.

Four days later, Leo plunged us into lockdown, and the rest is history.

You know all this. I just wonder is anyone else where I am now. I feel exhausted, absolutely worn out. Like my daughter who is waiting in anticipation of Santa, I’ve been a good girl. I’ve done everything I’ve been asked. I’ve barely been anywhere in two years. Being captive in my own house, I willingly got involved in many activist groups (namely with ILMI, which I loved), and I gathered a collection of activists’ stories, which kept my mind from wandering into dangerous places. At first it was just for fun, but I never was one for doing things by half. I refused to acknowledge the glaring warning signs of burnout.

And I’m sure burnout is a common phenomenon. I’d imagine that those in the medical profession, who quickly discovered the meaning of the word “vocation” would scoff at the rest of us using that word. But that’s how I feel right now-completely burned out. I’ve written many times about how writing is my go-to tool in times of mental distress, but it is incredibly difficult to be in a creative mindset when the media is constantly reminding you that just as we get a handle on this pandemic malarkey, things change again. If you turn off your notifications, your partner or someone you randomly meet in town is always willing to bring up the dreaded “C” word.

To be honest with you, I’m at the point now where I would gladly shut out the world for a while and chill watching telly all day in my pyjamas. I’d love to remove myself to somewhere remote with a stack of books and read, write and sleep without interruption. I’d love to be on a train to Dublin for no other reason than to meet friends, eat good food and talk shite before heading into the city to look around the shops and buy unnecessary shite. I could still do this if I wanted to, I suppose, but it’s not the same. There’s always that undercurrent of fear. It’s not difficult to see why the so-called “conspiracy theorists” become so annoyed at the mention of restrictions. Some of these restrictions don’t even make sense. Mixed messages from the media, it’s all enough to make your head melt.

And the pandemic isn’t the only thing occupying our minds. We’re still working, raising our kids, caring for loved ones. We’re still experiencing the everyday drudgeries of life: bills, sickness, bereavements. It hasn’t been an easy time. So if you feel exhausted right now, I reckon that sounds about right. 

And if you feel this way, you are not alone. This cursed pandemic is far from over, but I say it’s time to indulge in some serious self-care. Turn off the news, turn off your phone, take a deep breath and go easy on yourself. 

We need to look after ourselves, and each other now.

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Institutionalised

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I am eight years old. My parents are in the front of the car, I’m in the back. I’m the only one of my siblings who is being spoiled with one of these many trips to Dublin. They want to look at me again, to bend my legs back and forth, to mock me by “testing” the strength in my arms. At least it’s a day off school, I suppose, a day free from being reminded that unlike my classmates, I can’t knit. I can’t run. I am not like the others. The others don’t make these trips to Dublin.

I am outside a brown building. Coming out of the automatic doors is a little boy, around my age. He is wearing exaggerated metal splints around his stick-thin legs and walking like a tin man. He stands out, he’s too obvious; he might as well be wearing a bell and shouting “leprosy!” I’ve been threatened with these splints a number of times. A punishment for my legs, for not cooperating. Inside, I am stripped down, exposed. The experts stick markers to my legs and calls them diamonds. Then I walk and walk and walk. I am tired, but I am told to keep going. Push that body. Don’t let it defeat you.

Now I’m ten. We’re staying with my aunt in Belfast. Well, mum and I are staying here. We’ve been coming up and down for weeks, going to the Musgrave Park Hospital. I wear the special markers again and the computer shows the doctors how my muscles move. I walk up and down and up and down. The doctors tell me I am a supermodel, and it must be true, because only supermodels could have their bodies scrutinised and discussed at every angle. They’re recommending botox to loosen my muscles, so I can walk better. Mum tries to make a joke of it, saying that she would love botox. Perhaps, after all this time, this botox will make my life better. Yes, this is the miracle cure I’ve been waiting on since forever. After waiting in a hospital bed for what feels like days, they give me the injection to the back of my right calf, and I am disappointed. Surely to be made normal, I must be ripped apart and sewn back at the seams?

I’m fourteen. To appease my mother I’ve gone into respite, knowing that in spite of her insistence, I won’t enjoy it one bit. I wake up on the first morning to find a nurse, evidently bored on the night shift, unpacking my things. I’m angry, yet I don’t interrupt. There’s no point: she won’t understand my anger. Instead I lie there, silently watching her as she judges my clothes, raises her eyebrows at the sweets my mum packed me. She checks every corner of my suitcase. I feel invaded, but I’m not sure if I am justified in this. Maybe this is just something we disabled people have to put up with. I don’t like it one bit.

Transition Year and one month off my seventeenth birthday. I’ve written a play, and the year head has agreed to allow the drama teacher and I to produce and direct it. This is the beginning of a blossoming writing career. I have so much to do, but I am not in school. Instead I am in Dun Laoghaire, the NRH to be exact.  I am to get two weeks’ intensive physio-, speech- and occupational therapy. Have I any idea how lucky I am? I’m only in TY, I’m told. I won’t miss much. I am put on the children’s ward. The girl in the bed next to me is called Stephanie. She becomes breathless when she tries to talk, but she is sweet. She’s also frighteningly institutionalised. She is my age and has been here a few months, but has already forgotten what life outside is like. The happiest part of her week is when one of the nurses does her nails. Life here is regimented. On the first day I wake up looking for a shower, and I’m told that showers are not an everyday thing. Instead I am presented with a basin of soapy water and told to wash myself. On my days to shower, despite my insistence that I can manage, I am told that it is unsafe for me to shower alone. I have to tolerate a stranger touching me, seeing my bits and pieces (“nothing we haven’t seen before” they say cheerily)  as I am scrubbed much like a horse might be. The nurses laugh at my embarrassment. Typical teenager. But I am not a typical teenager. If that were true, I would be in my home economics class, not here. We go to bed with a video at half eight. I haven’t gone to bed this early since I was eleven. It’s not really an opportunity to rest, either: people need to be turned and toileted during the night, sometimes people cry out for assistance. I am only here for two weeks, but the memory of it will last a lifetime. They prescribe lots of physio. Even now, at thirty-five, I still do it. It’s good for me.

I’m still in Transition Year, back in the safety of my own routine in Tullamore. I’ve done work experience in the Tullamore Tribune, and my play is about to go live to an audience of four hundred people over two nights. It feels surreal; it’s what I’ve always wanted, and yet I feel like I’m on the outside looking in. I also feel exposed, as these characters are based on real-life people that I know and love. I also feel immensely proud and validated that my teachers trusted me with the task of writing and producing this play. In a parallel universe, we have to visit the National Learning Network as part of the “Community Care” module.  It’s an alternative to college for disabled people, people like me. As I sit listening I recognise its merits, but I also find myself wondering whether there is more to life. Will I end up in a day care centre in my twenties, drinking tea and making idle chit-chat about the weather? The prospect terrifies me, though I don’t know why. In many ways it may be easier than the mainstream route, but I am stubborn. Too stubborn sometimes.

So I enter fifth year, still terrified. I am just another number, I tell myself. Nothing special about me. I’ve convinced myself that the only way to avoid that day care centre is to study. I resolve to get enough points to get into Trinity, although I have no idea what I’m going to do after I get my degree. I become fixated with this aim; it’s the only thing that keeps me going.  My life revolves around school. I stop eating, watching with satisfaction as my belly shrinks into nothing. I am normal, I tell myself. I don’t stop studying until after midnight every night. I silently cry my way through lessons, despising my own weakness. I am lonely, but I don’t have time to go out gallivanting at weekends. I have no choice. I must do this. The Leaving Cert nearly breaks me, but I conquer it. Great triumph over adversity story. I am going to Trinity.

Trinity is a different world. I am equal here. With the right supports in place, I blend into the background, silently struggling with imposter syndrome. I can’t compete with these genii who claim to have been reading Jane Austen since they were five. I struggle in silence. I got a scholarship to go here. If I ask for help, people might think that I’m a dumbass and kick me out. I’ve resolved to leave when I am compelled to confide everything in Orlaith and Declan, the disability officers. They tell me not to leave. They also confirm something that I have suspected my entire life: that there is nothing wrong with me and that we need to use our inner fire to eliminate barriers for disabled people. I shamefully tell them I broke my electric wheelchair by bringing it across Front Square, but they don’t berate me (much!!). Instead they insist that the solution is to build a level-access pathway across the cobbles. I start to think that if an institution as old and as steeped in history as Trinity College is can make such dramatic changes, then there is no excuse for the rest of the world not to make these changes too.

During my time at Trinity, I learn so much more than how to write a critical essay. I learn how to be independent, how to cook, how to work and pay my bills. Every morning I wake up, and know that I have choices. I don’t always make the right ones, and having that freedom to fail and learn from those mistakes is vital. For example, one month I spend my rent money on God knows what and have to spend the next few months eating cereal. A hard but important lesson! I leave Trinity with the second class honour that was so important to me, though now I can’t remember why. I don’t even have the Latin parchment on display, I think it’s in my attic somewhere. After I leave college, I have no idea what I’m going to do. I feel like I’m leaving part of myself on campus, but with the grey buildings and the beautiful campanile and the leafy trees and students in their dufflecoats, I forget I’m not in the real world. The real world is cruel and it reminds me of my place: outside it. I apply for hundreds of jobs, but I do not get called for a single interview. What was I thinking, I berate myself, nobody would want a useless cripple.

Eventually, I am thrown a lifeline and Offaly Centre for Independent Living offers me a job. Mum tells me she was happier when I got offered a six-month internship with HP, an experience which would’ve cost me more money than it was worth. But I am delighted, and I still look back on my time there with fondness. My job is ridiculously easy. It is the emotional toll that is harder. I learn all about independent living and equal rights only to discover that these are only theories and that in reality Independent living cannot be achieved. I witness people becoming afraid to ask for what they wanted as the focus shifts to what people need at a basic level. There’s no money, we are constantly told at staff meetings.  We need to prioritise services, get people out of bed. Nothing we can do about it, we are told. Things are tight at the moment. I am an upstart, a troublemaker. I am not cooperating. I find myself trapped in an institution of my own, the dark depths of my own mind. I think back to my own respite stays of my childhood and feel physically sick at the thought of them being a long term arrangement, for me or for anyone.

It bothers me, even now in my position of privilege – I live independently, in my own home, with my husband, daughter and naughty little puppy – that there are people out there who are incarcerated by circumstances not of their own making. Many are living in hospitals either because their own houses are not wheelchair accessible, or because there are not enough ‘community supports’ like home helps and Personal Assistants, and it annoys me. It annoys me because I know that I am lucky. It annoys me because I constantly feel that I have dodged a bullet. It bothers me to hear about disabled people who are ready and willing to contribute to our economy being stuck at home because only their personal care needs are being met. It infuriates me sometimes that I was naively led to believe that disabled people could ever be viewed as equal when the story on the ground, as well as the lived reality, seems to be disturbingly different.

Sometimes, I wish I didn’t care. That I could get on with my life and writing and ignore the many rights that are being denied to disabled people at the moment. I’m not trying to make myself out to be a martyr, I promise. All I’m saying is why must there always be barriers to break through, obstacles to overcome? Why do I say the same thing over and over again to the point where I’m nearly boring myself?

Because, dear reader, I know what the alternatives are. And I never want to become institutionalised, in body or mind. I reserve the right to live a life of my own choosing, and I’m lucky to be free to exercise that right.

I am getting older now. My body – my fabulously unpredictable body – is letting me down in ways it never did before. It is scary, and I know that it is partly my own fault. But this is my vessel. It will never be perfect, it cannot be fixed, and nor would I ever want it to be. This was the way I was made – not worse or better, just me – and after all these years, believing that makes me stronger than any physio regime ever could.

Short Story: On the Edge

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The pale pink light gave the room a heavenly glow. Siobhan lay in silence, watching the cavity of her chest rise, then fall, then rise again. The dripping noise from outside her window had stopped; the rain must have finally subsided. It had kept her awake most of the night, which meant that she was not jolted from the security of darkness to give Aoife her night feed. Michael was supposed to be on duty tonight, but Siobhan had supposed that there was no point in waking him up. He’d have only been cranky, and God knows there’d been enough bloody rows between them in the last few weeks to last a lifetime.

‘You’re crazy, woman,’ he’d said to her at the peak of yet another row where she had threatened to leave for good. She’d even had her cabin-sized wheelie packed beside her, although she wasn’t sure what she had put into it. The decision to leave had been, as in times previous, a spur of the moment one, made because she couldn’t bear those nasty voices in her head. This time had been different, however. She had really hurt him.

‘If you hadn’t wanted your precious baby so much, I’d still be normal and not a bloody psycho,’ she’d screamed at him as she walked away, the sound of her own sobs failing to drown out Aoife’s.

She’d come back of course, hours later, and she knew Michael was relieved, even if he didn’t want to show it. They should’ve tried to talk it out there and then, but they were both tired from the fight. The constant fighting. Fighting to make it through the days, the hours. This had been exactly three weeks before, and now the pair of them were walking on eggshells. It infuriated her how he always tried to say the right thing, always tried to give her space. If he could find it in himself to be as much of a cunt as she had been, then she wouldn’t need to carry so much guilt.

A crappy mother, a crappy wife, thought Siobhan as she peeled off the bedclothes and slid into the tracksuit bottoms that she’d strewn on her bedside locker just a few hours before. She picked up one of Michael’s hoodies from the shelf, not because of sentimentality but because the excess material hid her grotesque frame, the extra pouch that now hung around her waist, like an internal bum-bag. She inhaled as she peered into the cot at her sleeping daughter, longing to feel that special connection. Aoife’s thick lips smiled, something which Kathleen, Siobhan’s mother-in-law had insisted was just wind. Well of course it was just wind, Siobhan had thought. It seemed that Aoife was willing to settle in anyone’s arms but in the arms of her mother. Siobhan didn’t know how she felt towards Aoife, but it wasn’t love. It wasn’t hate, either. It was nothing.

What sort of mother feels nothing towards their own baby? A baby that she had yearned for since she was given her first baby doll by Santa at the age of just five years old? Three years of expensive and gruelling IVF had given Siobhan a daughter more beautiful than she could have ever imagined, and yet at that moment, Siobhan didn’t feel that she was cut out for years of self-sacrifice, of putting somebody else first.

Trying to stop herself sniffling in the dark, Siobhan padded towards the door, watching the sleepy scene. It was almost romantic, like a Cow & Gate ad. A gentle inner voice tried to persuade her to take back off her clothes, to lie down and try to sleep, but Siobhan thought it was too late now. She crept into the kitchen and rummaged through the medicine box, pocketing every painkiller she could find.

Soon this pain would be over.

Soon she would be over.

Despite the high winds earlier in the night, Siobhan hadn’t expected to be peppered with cold, misty rain when she opened the front door. She smiled to herself as she momentarily considered bringing an umbrella. Ha! She thought. People who are dead inside have little call for umbrellas.

She walked over the Whitehall bridge. The road was gleaming black from all the rain, and the usually busy Daingean Road was quiet. She had it planned: she would walk a few miles down the canal, then she would take all the pills until she felt a little delirious. At that moment she would succumb eternally to the murkiness, allowing herself to sink to the bottom. She supposed that people might be sad for a few days – her sister Aine would take it particularly hard – but in that moment she was grateful that her parents were no longer alive to feel the pain. She wished that she was more religious, that she believed that she would be reunited with her mam, whose voice she yearned to hear with every fibre of her being. But she wasn’t.

The wind was gathering pace again, a perfect time to venture nearer the edge. This way, she wouldn’t have to jump. She might have been just out for a midnight stroll when she was blown in. Nobody would have to know. She was just about to step closer to the edge when a gravelly voice behind her startled her:

‘Wild night to be out for a stroll.’

At first, Siobhan thought she was hearing things, because surely nobody in their right minds (she didn’t fall under that definition, she supposed) would be out at this hour? When she turned around, the sight of a shadow startled her. Despite the wind, she could detect the metallic smell of vodka from his breath. Yet this person was not staggering: he was trudging along slowly, as if carrying a great weight on his shoulders. She felt the hairs rise on the back of her neck, ready to go on the defensive.

‘Mind your own business,’ she said at last. Couldn’t he see that she wanted to be left alone? It occurred to her that he could be dangerous, maybe capable of rape or murder. But then again, wasn’t everyone? ‘I don’t have any money. Leave me alone.’

She half-jogged further up the canal path. It never occurred to her to walk back towards home, where there would be somebody waiting to protect her. What she did realise, however, is that she didn’t feel that she was worth protecting. She also noted that while she wanted to disappear, dissolve into the earth as though she never existed, she needed to have control over how it happened. God knows, she thought, it’s the only thing I seem to have any control over at the moment.

Her footsteps slowed, and when she was outside her own head she heard the hesitant footsteps behind her. The aroma of cigarette smoke was infused in the sharp October breeze. She sat down on the hill outside the old Daly farmhouse, inwardly cursing herself for doing so as the wetness crept in, leaving her derriere saturated. The violent wind had subsided; all she was left with was silence and self-disgust.

After a few moments, her companion crouched down beside her. He smelt of sweat, of old urine, of hopelessness. Bloody typical, she thought. Trust me to meet a drunk. Her partner inhaled, which started a violent coughing fit.

‘You ok?’ she asked, forgetting herself.

The man nodded. ‘Be grand in a minute,’ he said, wiping the tears from his eyes. ‘I’m well used to it by now.’ He reached into his jacket pocket and pulled out a long can.

‘You should quit the fags,’ Siobhan said, immediately hating herself for her own self-righteousness. Who was she to talk when she had the entire contents of her medicine box in her pocket, ready to take in one go?

‘I probably should do a lot of things,’ he answered her, his voice quiet. Siobhan heard the snapping of the can, and her stomach turned at the smell of fresh beer, presumably cheap. ‘You shouldn’t be out here so late. These parts can be dangerous for the likes of you.’ The beer trickled down his throat. He wiped his mouth with the back of his hand.

‘What do you mean, ‘the likes of me’?’

He waved his hand, fanning her words away. ‘You know exactly what I mean.’ He rummaged in his pocket. ‘Smoke?’

‘No.’ Her voice was firm. ‘I don’t smoke.’

‘Ha. It must be hard to be so bloody perfect.’

Siobhan was relieved to smell the smoke; sitting so close to him, her bloodhound-like sense of smell detected urine and old underarm sweat, with the slightest hint of shit. She yearned to escape, to be at one with the swirling brown water in front of her. She took a deep breath, then another. Already she felt like she was suffocating. It wasn’t the feeling of comfort that she had been looking for.

‘Perfect. Ha! If only.’ For the first time since they met, Siobhan considered how she must appear in her companion’s eyes: a silly little damsel in distress, a privileged housewife who couldn’t possibly know what real hardship felt like. ‘You don’t know anything about me.’ She stood up, putting her hand in her pocket, feeling safer as she held the pills in her hand. As long as she had a plan, however warped that plan might be, she felt grounded. More grounded than she had felt in a long time.

Her stomach turned to bile as she thought about events earlier that day. It had started as an average day, or at least what she now considered to be average. She found it difficult to believe that just a matter of months before she was the manager of the Tullamore branch of the Bank of Ireland, bringing in quite a generous pay cheque. They’d squirrelled most of it away, of course, being sensible and thrifty. Aoife had been a surprise, a most welcome surprise. Her mere existence was testament to the fact that even the most highly paid and expensive doctors can get things wrong sometimes.

Aoife had awoken at six that morning, demanding her morning feed. Siobhan should have been well-rested; Aoife had slept since half nine the night before. Instead Siobhan had laid awake all night, unable to turn off her brain which was thinking at breakneck speed. What if she had dropped Aoife when she nearly tripped over that loose tile in the bathroom earlier? Aoife’d had a tiny bit of red in her spit-up earlier which Siobhan had assumed was from the strawberry she’d eaten earlier that day, but now she was worried that it was blood. She should’ve checked, and she didn’t. What sort of mother would allow her own child to bleed to death?

Siobhan couldn’t live with the constant inner panic anymore. It didn’t take a genius to work out that Aoife would be better off being looked after by someone more experienced, someone who would appreciate her for who she was. She warmed inside as she thought of Aoife’s blonde eyelashes, the tiny half-moons of her fingernails, the dimples that appeared when she smiled. Aoife was perfect. She deserved better than the fighting, than a mother who didn’t know what she was doing.

Another hacking cough disturbed Siobhan from her daydreaming. She stood up, and adjusted her jacket.

‘Anyway, it was nice to meet you. I really must…’

‘It was this very spot,’ the man said to her, gesturing towards the canal. ‘Where they found her. You know, I come here every night, try to work out why… She didn’t even leave a note.’ He wiped his chin on the sleeve of his jacket. ‘They say she killed herself, but I reckon that’s bullshit. She had three kids… she was happy.’ He lit a cigarette, the blue threaded smoke lingering in the calmness; the wind had passed, as Siobhan had known it would. ‘I’d only seen her the night before. She was smiling, laughing, dolled up to the nines…’

‘Who was?’ She only asked because she assumed it rude not to.

‘Karen. Oh, Karen. Now I’ve made a lot of mistakes – I’m sure that’s obvious – but she definitely wasn’t one of them.’ He pulled hard on the cigarette, as if he was seeking comfort. ‘She had it all, believe it or not – looks, brains – her mother’s doing of course.’ He crushed the empty can into the palm of his hand. ‘You hear stories, don’t you? Tell-tale signs, people losing interest in their lives -goodbye notes – we got none of that. No explanation.’

‘I’m so sorry.’ She didn’t know what else to say.

He shrugged. ‘They say men don’t talk. I don’t talk about Karen. I don’t know… maybe I’m hurt, ashamed… She could’ve fucking said something.’ The trees rustled gently in the breeze. ‘In the beginning, it was so simple. She’d been selfish, a coward – I thought maybe it’d been some silly woman hormonal thing, but they have pills for that now, don’t they?’

Siobhan scoffed. ‘You men are all the same. You think that solutions are so simple. And that we’re hysterical little women who know nothing about hardship. You have no idea what it’s like to have no control over your emotions, having to act all normal when your head is completely frazzled.’ Her voice started to break as she thought of her daughter at home. ‘How it feels to be completely useless and to have someone depend on you…’ Her chest shook with hacking sobs; she could barely catch her breath. The man looked up at her, nodding his head.

‘There,’ he said. ‘It’s out there. You’ve said it. So you’re a crap mum.’ His candidacy surprised her. ‘I suppose you beat her black and blue when she cries…’

‘Well, of course not…’ She was taken aback.

‘Or spend your money on high heels instead of baby formula.’

Siobhan’s fists clenched. ‘How dare you…’

‘Or head off for evenings out and leave bubs home alone. Leave a bottle in the cot, be grand.’

She laughed at the absurdity of the last one. She knew he was joking now.

‘You’d be surprised,’ he shrugged. ‘I’ve seen it. But Karen wasn’t like that, and neither are you.’ He stood up, wiping his hands on his thighs. ‘Go home. Get a nice hot bath.’ Siobhan screeched as he slid his hand into her oversized jacket pocket, taking out the pills and throwing them into the canal. ‘Things will be better in the morning. You’ll see.’

‘How did you know?’

‘Woman, you’ve been rooting in your pocket all fecking night.  This isn’t my first time to do this, you know. After Karen, I swore never again. Not on my watch, anyway. If you wanted to kill yourself, you would’ve done it by now. We’ve been here all night.’ He nodded at the orange rising sun and grinned. ‘For all you knew, I could’ve helped you. Murdered you. Look at the state of me. Wouldn’t blame you for making that assumption.’

‘I guess we can never know what’s going on in other people’s lives.’

‘Nope.’ He started to walk away. ‘Unless we choose to tell people. How can people save us if they don’t know that we’re drowning?’

She watched him walk away, and how he walked with a sense of purpose. She supposed he had nowhere to go. But, she realised, he had done an important thing that night – he had saved her life. She was still shaking when she got to the front door. A white-faced Michael greeted her, his face filling with relief as he beheld hers.

‘Thank God,’ he said as she broke down, wrapping his protective arms around her. ‘I was so worried, I thought you might’ve done something stupid…’ Both their faces were awash with tears. ‘I’m so sorry… I’m so glad you’re okay.’ He squeezed her closer to him.

And then Siobhan whispered the words she had always found so hard to say:

‘Michael, I’m not okay. I think I need help.’

He nodded, and finally Siobhan felt the weightlessness she had been craving.

Dog tired

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Some nights… well, okay … most nights, instead of writing (or as I write) I end up having in-depth conversations with friends over Facebook messenger. Being somewhat of a social recluse when I’m in full-scale writing mode, I think of it as maintaining an important connection to the outside world. We discuss many things, sometimes work related, a bit of banter about upcoming holidays, things like that. And I wanted to share with you one of the things many of us seem to have in common:

We’re bloody tired.

When you’re an activist like many of my friends are, you don’t want to be seen as weak. You’ve spent your entire life fighting for equal rights and opportunities. The last thing you want is to be perceived as less than or worse still, as a moany crip. You know what I mean: someone who brings all of their struggles in life back to the fact that they have a disability or impairment. Someone who’s perceived to do nothing but complain.

I know many people with disabilities who have great careers, lovely families (like mine), are able to drive, maintain a home and, if they’re lucky, a career and maybe even a social life. This is merely a dream for many. Yet in conversation with my friends on a one-to-one basis, they share their deepest fears. Are they losing the physical ability to do the things they love, or will they do so in the future? Will they be able to live independently if Personal Assistance is not available? Will they be perceived to be lazy or passive if they can’t give everything they have, 100% of the time? If they stop fighting, will they lose everything?

I have written before about how I spent most of my life trying to fit in. I remember particularly my Leaving Certificate, and how, even if it killed me, I would get enough points to study in Trinity. I remember the lunacy of staying up until one in the morning, anxious to get no less than 80% in all my exams and essays. I knew I was capable of it, but I nearly paid the price of my mental sanity. But I was so determined not to be defined by my disability that in many ways I rejected it, refusing to believe that I was impaired in any way.

For years now I thought I have been a firm believer in the social model of disability, that it’s society that disables us. And I do believe this: a lack of available housing, accessible transport and personal assistance constantly threatens to deter us from achieving our true potential. However, the reality remains that until these issues are tackled in their entirety, we must try our best to adapt within a society that won’t adapt to our needs. It might mean taking up employment in an inaccessible building, or forgoing the opportunity of job promotions because we can’t afford to lose our medical cards. Maybe it means highlighting our weaknesses and shortcomings so that we can access vital services. Maybe it means languishing in a day centre so that we don’t have to face the deafening echoes of silence at home in our childhood bedrooms or a residential institution.

Sometimes it might mean plastering on a smile so that those around us don’t realise the amount of pain we are in, how exhausted we are or how much effort it took for us to get out of bed that very morning. Because giving any indication of how impairment affects us is a major sign of weakness, right? Isn’t it akin to saying, ‘well, I’m not really equal, and I don’t believe really that we live in a society that disables us? My impairment is my problem?’

No, people – no, this is not what this means. At. All!

The problem is that we live in a society that, when it comes to disability at least, we are brainwashed to believe that our shortcomings are somehow our own fault. For example, prior to being pregnant with Alison, I never used a rollator. In my mind, I never needed one but in reality I was probably constantly falling over. Two days after giving birth, after spending three weeks in a manual wheelchair, I was determined to start walking again, using the rollator at first and then eventually walking on my own as I did before I was pregnant. This was my ultimate goal and it would make me somehow less of a person, less of a mother even, if I didn’t meet this goal. Where was I getting these ridiculous ideas? Mirrored by a society with their stereotypical ideas of what a ‘proper’ or ‘strong’ mother should be? Incidentally, it’s been six years and I never did get to a place where I felt confident walking without the rollator. The medical model of my brain is saying ‘oh, it’s because you didn’t do your physio, you didn’t try hard enough.’ In contrast, the social model tells me that I’ll never be any good to anyone if I’m exhausted trying to do things that in reality don’t really bloody matter!

That’s why, when Alison was two-and-a-half, I decided to get an electric wheelchair. I wanted to be able to bring her for walks in the park, down the canal, walk her to school like a proper mummy. Yet, although I know it’s true that the wheelchair gives me so much more independence, social conditioning sometimes makes me doubt my own judgement. It’s been drummed into me that physical ability, including the ability to walk (which many don’t have) is something which must be used at all times. On the other hand, if I didn’t have it, I would probably not be able to write this blog, have the energy to spend on playing with my daughter or to sit on the committees that I sit on now.

I guess what I’m saying, especially to my friends – those who I’ve spoken to about this at length – is that we need to stop measuring our worth and instead start challenging the ableist society we live in. Can’t hold down a full-time job, or are you struggling to keep up in education? Can’t seem to source a suitable place to live? Perhaps it’s because you’re competing without reasonable accommodations, which isn’t really a level playing field. I’m not saying play the ‘disability card’ and roll over and do nothing with your life, but of course you’re tired. You’ve been trying to claim your rightful place in society for a long time.

So take stock, take some rest and put the fighting gear back on, because the battle isn’t over yet. And take solace in the fact that you are definitely not fighting alone.

PS I apologise for the crappy quality of writing in this blog, but guess what? I’m tired!

Ok to be not ok?

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I was looking at my diary this evening trying to work out a writing plan for the next few months. I’d be ashamed to put a figure on how many blogs I aim to write a month versus the amount I actually have written. As I was going through my diary I saw that I’d written beside May 1: Mental Health Awareness Month. I had obviously planned to write something incredibly inspiring when I made this note, but as you can see when you scroll through my blogs for May, it didn’t happen. I couldn’t bring myself to write it, because doing so would’ve made me a hypocrite.

The truth is that on May 1, I was struggling to get out of bed, and I wish I could tell you why.

It wasn’t due to stress: sure, I was busy with the novel and other stuff but it wasn’t particularly taxing. Everything was great: JP was himself, and Ali her bubbly self and writing was going well. Yet since the end of January I had been feeling shit for no apparent reason. I started to feel fearful; I’d been here before and overcame it with the assumption that it would never happen again. That if I ever felt down again that I would speak out and get help before it got overwhelmingly bad.

It crept up on me quietly this time, out of nowhere. I was fine one week and not okay the next. I felt frustrated as I scrolled down through my Facebook feed, seeing the clichéd ‘It’s ok to be not okay’ and ‘needing help is not a sign of weakness’. Well, perhaps this was true for other people, I thought, but it didn’t apply to me. I had no reason to be down – I had a great family, great home, and I had lots of work coming in. And yet I was going to bed every night, tears falling from my eyes.

The truth is I felt like a failure. I felt empty. My novel might never be written. I don’t know how to go about finding another job. I still feel guilty about leaving my job behind three years ago, a job that I always felt that I was never any good at. These thoughts twirled around my head as I lay down each night. I had let my mum down, my daughter down and myself down. Some people see me as a role model, whereas I think I am a bit of a fraud.

Things finally came to a head on the 17th May. It was National Walk to School Day and I had walked Ali to school alongside other parents, a perfectly normal thing to do. But I didn’t feel normal at all. I left Ali at the school door and whizzed home, the tears stinging my eyes. I was sick of it, of feeling so crap. So I did something I’d never done before – I rang the doctor to make an appointment. There was an appointment that evening, and I took it. The minute I hung up, I felt sick. What was I going to say? What if the doctor thought I was crazy and had to go on antidepressants? What if she reiterated my feelings that there were people worse than I was, that I was being melodramatic? Also, the thought of handing over money just to have a chat with a doctor seemed like a massive waste.

As I sat in the waiting room, I felt like a fool. Across the room, there was a little baby in a carrycot screaming in pain. I don’t need to be here wasting time, I thought, picking up my handbag. But in true dramatic style, the doctor called my name at that very moment.

‘Sarah Fitzgerald.’

I followed her to the room. ‘Did you get your driving licence sorted?’ she asked, looking at the screen. I laughed.

‘Just this morning, believe it or not.’ (The rigmarole to get a licence these days is ridiculous).

‘So what can I do for you?’

‘Well, I don’t want to be wasting your time,’ I said, apologetically, ‘but the truth is I just don’t feel myself. I mean, emotionally.’

She stared at the screen. ‘How long has this been going on?’

‘Ah, on and off, since the end of January.’

She raised her eyebrows. ‘That’s an awfully long time,’ she said. ‘Do you know what triggered it?’

I shrugged. ‘No idea. Just a general sense of failure I guess.’ I was starting to sound like an idiot, and was clutching my handbag, ready to run.

‘Okay. And did you suffer from postnatal depression? Or do you think you have it now?’

‘I had it for two-and-a-half years.’ She frowned.

‘There’s no record of that here.’

‘I didn’t report it at the time. Too scared.’

‘Right, and are you managing? Housework, meals, looking after Alison?’

‘Oh, absolutely. It’s not affecting my work at all, at home or otherwise. I just feel flat.’

‘And what do you do in your down time?’

She’s funny, I thought. ‘Not much. I try to work as much as possible. I work freelance, so if I don’t work, I don’t get paid. I like to stay active, and disability activism is so important to me. And I’m looking for another job. Love being busy.’

‘Hmmm, you don’t think maybe you’re too busy?’

I scoffed. ‘It’s not like I have a full-time job or anything!’

As I listened to my own answers, I could hear what the doctor heard, at last. Firstly, that just because I didn’t have a nine-to-five job didn’t mean that I wasn’t working, or that the work that I do wasn’t valuable. Secondly, my self-worth is so wrapped up in what I produce in terms of my parenting and my writing that having not finished my novel had become like the end of the world to me. Thirdly, that downtime is important. This is the one I struggle with the most. I always feel like I should be doing something: writing, playing with Ali, cleaning, exercising. To me, sitting watching TV or reading is wasting time.

And then the doctor said the one thing I absolutely hate to hear:

‘You need to keep your expectations in line with what you can physically achieve.’

I stiffened. ‘I don’t think my disability is relevant, to be honest.’

The doctor laughed. ‘Well, it is. And also, you’re human. Take more rest. And talk more.’ She scribbled down the number of a counsellor on a post-it, which is still lurking somewhere in the bottom of my handbag.

I came out of the doctor’s feeling emotional. I had expected to be told that I was silly, that I had nothing to feel down about, that I should buck up and  cop on. And she didn’t say that at all. She had validated how I was feeling and acknowledged that it was real.

I’m not writing this for attention. I didn’t even want to publish this to be honest. I don’t want people to feel sorry for me, or feel that I’m not able to work because I am (Keep work coming please – I like to eat). I was going to leave it languishing on my laptop. Then I thought of all the recent suicides, both local and celebrity, and reckoned that if I could help just one person reading this, then it would be worth sharing.

Sometimes, despite the clichés, it doesn’t feel right to be not okay.

But it’s not right to suffer in silence either. And I can’t be the only one who’s sick of it.

So let’s not do it anymore.

So if any of you guys want to share your stories please do. Even if it’s so I don’t feel like such a pariah

Happy World CP Day!!

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*Some websites are telling me this is the 5th October every year, others are saying 6th. I will be observing it on both days by eating copious amounts of chocolate*

Hey everyone, happy World Cerebral Palsy Day!

I wasn’t going to bother writing a blog in honour of this special day because I don’t want to get too repetitive (okay I know that ship has sailed but I did write a blog on it last year), but when I read last year’s (god-awful) blog entry I realised that I’d written it on the assumption that all of you actually knew what Cerebral Palsy was. For those of you who don’t know me, Cerebral Palsy is what puts the ‘wobbly’ into wobbly-yummy-mummy. There’s a wealth of information about the disability around the interweb, but why would you bother with that when I, an actual person with CP (and therefore an expert) can teach you everything you need to know?

So…

  • Cerebral (brain) Palsy (paralysis) is caused by a lack of oxygen or a head trauma either shortly before, during or shortly after birth. Which is a bit of a pain when you think about it, because your brain controls everything your body does. So, for example, when your non-CP brain says ‘Pick up that cup,’ your hand grabs the handle and voila. Whereas a CPer could do anything from grabbing the cup to going into spasm and hurling it across the table. It’s this unpredictability that makes life that little bit more interesting.
  • It’s estimated that people with Cerebral Palsy use at least twice the amount of energy ‘normies’ use basic things (the perfect excuse, in my opinion, to laze around with chocolate in the evenings). As I’m typing this right now, my involuntary movements are in overdrive: my head is bobbing, my legs are moving – neither body part are needed for the act of typing.
  • Also, every person with CP uses their body in different ways. Unfortunately this can accelerate wear and tear, but there’s sweet FA we can do about it. For example, I’m unsteady on my feet but I find that if I do things on my knees I can do a better job at things like hoovering and folding laundry. I often get swollen knees, something I never got in my teens (I also did my homework at my bed, on my knees). I also fall a lot on my knees. My poor auld knees. I also know people who type with their tongues, elbows and feet a la Christy Brown. We are resourceful folk.
  • Cerebral Palsy is characterised by the presence of many things, including unsteady gait, speech impairment, involuntary movements, poor coordination and so on. But in my experience, it doesn’t affect any two people in the exact same way. I’ve yet to meet a fellow CPer whose impairment is an exact mirror image of mine. A few people may have moderate to severe intellectual impairments, but this is not always the case. A speech impairment is not an indicator of poor intelligence.
  • One thing that I’ve learned about CP that you won’t find on Wikipedia is that some of us (as in myself and at least five other CPers I know) are prone to bouts of uncontrollable giggling. Which on the whole is hilarious but also completely involuntary. If I had been any other student in my sixth year English class I would’ve been suspended for my ‘disruptive’ behaviour in class. My CP friend had similar experiences in college where her giggling disrupted whole lectures and frequently set off waves of giggling in lectures.
  • The following point is not only related to people with Cerebral Palsy but to all people with disabilities: cinematic depictions of people with CP should be portrayed by disabled actors and not Hollywood names ‘cripping up’ for roles. I mean, would you find it acceptable for somebody to paint themselves a lovely brown colour for a role? No, you’d call it racist, and rightly so! I bring up this point after meeting an actor with CP a couple of weeks ago who, for obvious reasons, only gets called to fill the roles of disabled characters. It seems that ‘cripping up’ for roles has now become normalised (look at Me Before You: a disabled character has the lead role, but is played by a non-disabled actor.) It’s not as if there’s a plethora of work out there for disabled actors, so let us represent ‘our people’ when we can!
  • Finally, people with CP are just that – people. Some are nice, some are assholes. Most importantly, we are definitely not inspirational purely in the act of having CP. In fact, comedienne and writer Francesca Martinez (who, if you look her up on YouTube, will tell you even more interesting gaffes about having CP) renounces the label of ‘inspirational’ by saying she spends eleven hours a day in bed (lucky sod). We are not all the same, and don’t they say that variety is the spice of life?!

Phew, that’s a reasonably long blog. I’m exhausted from my involuntary workout. Off to eat chocolate. For energy purposes, of course.

School lessons

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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?

 

 

Unproductive Days

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Lads, for the last half an hour I’ve been sitting looking blankly into the laptop screen silently willing the urge to write to wash over me. And these are the first few words that I’ve managed. So, instead of marking today down as an unproductive one, I’ve decided to be sneaky and write this blog and mark it as work. Genius or what?

I ‘came into work’ at 9.30pm this evening with the intention of researching an article. That hasn’t happened so I’ll have to do it tomorrow.

When I started writing a novel two years ago, I told myself I’d be finished the first draft within six months. Ha. Hahahahaha. I should’ve been a comedian! New aim is to have it done by this Christmas. Oh, and possibly a play too. And a few more newspaper/magazine articles. And play a part in a major event organised by disability activist group, By Us With Us in September.

What do you mean, these are totally ridiculous, unattainable goals? Well, I’ll show you…

I didn’t manage to write much today. But I did manage to bath my child, bring her to the hairdressers and to a birthday party, complete with card and present.

No, I’ve written sod all. But I did manage to clean and hoover the house.

It’s hard to explain, but when I don’t manage to write, I don’t feel like myself. In fact, I’m grumpier, harder to live with, and sometimes this borders on self-hatred. When I see everything I expect myself to do written down on paper/on the screen I can see how ridiculous it is.

I’ve been pushing myself a little harder lately, conscious that the summer holidays will eat into my writing time. I know I won’t be blogging as much, and that my working week will be at least halved.  I might get one or two days a week to work, and the rest of my time will be my daughter’s. And rightly so.

If you had told me ten years ago when I started and abandoned the novel I’m working on now that I’d be a writer with a handsome husband who supported me and a beautiful daughter who loved to read, I would’ve called you mad.

If you have told me that I’d be totally obsessed with the Independent Living Movement, I would’ve scoffed. I hate committees and commitment and yet both seem to be dominating my life at the moment.

I’m coming up to the third anniversary of the July night that I was determined to end everything, once and for all. If you had told me then that I would come out the other end and start to recover, even like myself a little, I wouldn’t have believed you.

And I think of that Sarah back in 2014, who was struggling to stay together for five minutes at a time, and how thrilled she’d be to have a novel on the go, some freelance work, a little blog and a real opportunity to help people. And not in an arrogant way, I think of how far I’ve come from three years ago, just by taking one day at a time.

Suddenly, not being able to focus and write a few words doesn’t seem like a big deal, because I know there’s  always tomorrow.

And it’s great to be able to believe that.

D-Day

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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

Enda the Line

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Finally, after what seems like an inappropriately long wait, Enda Kenny stepped down as party Leader of Fine Gael at midnight on Thursday 18 May, and a new party Leader will be announced by the 2 June.  And predictably, many people in this country, including myself, are reflecting on the work (or damage, depending on who you’re talking to) he’s done over the course of his time as Taoiseach. Many of us will not be sad to see him go, especially the many people with disabilities that he’s let down so badly over his term.

Now, I am not saying that by any means that Enda had an easy job. Nor am I denying the fact that his predecessors, Bertie Ahern in particular, left a massive mess behind that Enda would have to clean up. However, during Enda’s time as Taoiseach, I have witnessed a frightening change in the narrative of disability in this country. Perhaps it’s merely age-acquired wisdom, because I don’t remember feeling this trapped as a disabled person during the early noughties. I went to college, I found it easy enough to find summer work and for a very brief period, I was even naïve enough to view myself as equal: willing to contribute to society and worthy of respect for it as a result.

I was just watching an interview activist Joanne O’Riordan had with Gay Byrne’s RTE series The Meaning of Life, in which Joanne discussed her experience with Enda Kenny. Kenny had promised her that the funding for P.A. (Personal Assistant) Services would remain untouched, and then turned around and delivered the blow that a whopping €130million would have to be taken from the HSE Budget, including a €10m cut to the P.A. budget. This soul-shattering announcement demonstrated how little our Taoiseach thought of our lives. This announcement drove activists with disabilities to sleep out in the cold for three days outside Leinster House until these cuts were reversed. It was both a victory and a slap in the face for people with disabilities, because although we were listened to, we realised that we would always have to take drastic measures to have our voices heard.

I worked in the area of Independent Living for seven years, and Enda Kenny was Taoiseach for four of those (since 9 March, 2011). Part of the reason I made the tough decision to leave my job in 2015 was because I found it too difficult to watch, as I saw it, the degeneration of the Independent Living Philosophy. When I joined Offaly CIL first, I was told to have passion. I was encouraged to get excited about equality for people with disabilities, to see the Personal Assistant Service as the key to achieving this equality. I was told that Independent Living was about freedom, control, choice. It was a liberating service with its own unique history and philosophy.

For me, Enda Kenny’s government destroyed all of that. Suddenly, service provision was about a hierarchy of needs, and the service became more about covering the basics rather than encouraging ability and individuality. When I spoke to people about this great ‘philosophy,’ I felt I was lying to them. I would ring my fellow Leaders and ask them to come into the office for a coffee and a chat, and they would tentatively ask me ‘are my hours going to be cut?’ I have to hand it to Offaly CIL, they did and still do resist cutbacks and they go above and beyond to protect Leader’s hours. But it infuriates me that because of Enda Kenny’s nonchalant attitude towards disability that my fellow Leaders continue to live in fear.

I’ll never forget reading the coverage of the three-day protest Martin Naughton led outside the Dáil in 2015 (unfortunately, I was out of the country at the time – yes, I really am just an armchair activist). Martin was asking for the opportunity for people with disabilities to have more control over their own lives by allowing money normally paid directly to service providers to be redirected to the experts, the person with the disability. The protest bore little results apart from a lot of negative press about Enda Kenny, with people by now being so annoyed with him that the focus from the public was more about what a complete tool he is as opposed to what Martin Naughton was asking for (the right for people with disabilities to truly experience Independent Living, in case you’re in doubt). And yet, even after talking to Martin and other disability activists, the future of our lifeline – the Personal Assistant Service – is constantly in jeopardy.

Oh, one more thing – some of you out there think that Leo Varadkar should take over as Taoiseach. And perhaps he should, but I’m personally a bit wary. Aside from the fact that our health system is currently a shambles, a report entitled ‘Make Work Pay for People with Disabilities’ recommends that people with disabilities keep their medical card, as well as raising the current cut-off point of €120 before they start to lose their Disability Allowance. Now, don’t misinterpret me – this is great progress – but given that a report from Inclusion Ireland in 2014 estimates the weekly cost of disability to be €207, it seems that there is a long way to go before people with disabilities can expect a decent quality of life. Also, there is a fear that this system could force people into work that they are genuinely incapable of, a bit like what’s happening in the UK at the moment.

So goodbye, Enda Kenny. Undoubtedly you did many great things for many people across Ireland during your time. You’ll have to forgive the disabled population of Ireland for struggling to remember exactly what they were.

And a quick message for your replacement, whoever you may be: We as people with disabilities have put up with enough shit over the last nine years to last a lifetime. We definitely are not in the mood to tolerate any more. Just thought you should know that.