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(To mark World Mental Health Day, 10/10/2018. Apologies for the corniness – I bashed it out over lunch)
I have this voice inside my head
That often drags me down,
And nothing I can say to it can make the bastard drown.
It tells me that I’m ugly, useless, a waste of space
And worst of all that I’m alone in everything I face.
See, people have bigger problems:
Some people don’t have homes –
Others burdened by their mortgages
Or living on their own.
Some are trapped by violent partners
Others will have no tea.
I live a life of privilege that
This isn’t happening to me.
I couldn’t tell my friends or family –
I couldn’t bear the shame
Of having that stigma of ‘attention seeker’
Attached to my name.
They’ll think that I’m a nutcase
or that I need to take some pills.
I might be told ‘snap out of it’
Or that I’m not really ill.
And so I will say nothing,
Until one day when I wake
I decide that I’ve had as much
Torture as I can take.
What started as a grey cloud
Has turned into a storm
And I can see no way out…
Or maybe… just maybe…
A chink of light will shine through,
When I pluck up the courage
To turn and say to you:
‘I really don’t feel like myself,
I don’t think I’m okay.
I just need you to hold my hand.
I don’t know what else to do or say.’
Because, you see, I could say nothing
And no-one would’ve said
That there’s a bomb about to explode
Inside my messed up head.
The agony is tangible, it eats me up inside.
But I know you cannot help me if I proceed to hide.
And so, I must say something
If only so you know
That if you ever, ever feel the same
I need you to tell me so.
Because silence is a killer,
And pride keeps us apart –
And though the sentiments of this poem seem ‘corny’,
I mean them with all my heart.
One last thought, and then I’ll say goodbye:
There’s often more to things than meets the eye:
Smiles don’t always mean joy, laughter can hide sorrow,
So check in on those you love – don’t leave it til tomorrow.
From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).
An open letter to An Taoiseach, Mr Leo Varadkar,
Dear Mr Varadkar,
I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.
Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.
Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.
In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.
As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.
Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.
I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.
I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.
And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.
Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.
Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.
You owe it to us, our families and our children, to enable us to live the best lives possible.
Autumn is more than a season.
It’s the feeling
Of the world falling down around you –
Yellow and reds:
Heaven and hell.
The closure of warmth,
The fug of turf fires,
A subtle breeze biting your skin,
A familiar darkness closing in.
It’s the season of horror
and hiding behind masks –
A chill leaks into your soul
as you look around
at what is lost.
The silenced children’s voices
now hide behind closed curtains,
Their once glowing faces now white
From the glow of their screens.
Trees sway, unconfident in their nakedness,
Their once plentiful garb strewn to the ground.
Desolate, they wait patiently
For longer days
And a hint of sun.
And so, we go about our days,
Our houses and cars lit to fight the darkness,
Waiting until we see that first green bud
On the old, dependable sycamore tree.
Sarah Fitzgerald, 02/10/2018
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.
Three years later, I still can’t make up my mind what I want. I really thought that what I wanted was to be a full-time freelance writer, with nothing else to bother me during working hours – just me and my desk. I tell people I am writing a novel, or at least, trying to. So why have I just committed to spending the rest of this year, and some of next year doing Disability Studies in Maynooth? Don’t get me wrong – I have no regrets. It looks like an interesting course and it’ll be handy to have if I ever do decide to go back into employment in the disability sector.
I’ve had a really productive summer (evidently not blogging-wise but you can’t have it all). In February I was co-opted onto the Board of the National CIL which was a huge honour, and I’ve been involved in some interesting and thought-provoking projects. Most recently I attended an Independent Living workshop in Offaly which was facilitated by a fellow activist. The aim of the workshop was to get back to the roots of Independent Living and to reinforce the idea that as disabled people, we are the experts in our own needs. It was a great session.
One of the questions the facilitator asked us was ‘What are the barriers to Independent Living?’ Loads of great answers were given: lack of Personal Assistance, lack of accessible housing and transport. But I, ever awkward and different, gave the answer of ‘internalised oppression’, you know, just for the craic. The facilitator smiled.
‘Big words,’ she said. ‘Would you like to explain what that means?’
‘Sure.’ My hands were sticky with sweat. ‘Internalised oppression is when you come to believe all the negative labels given to you from outside sources. It’s when you have been told and reminded of your limitations so much that you begin to believe them. As time goes on, you start to place limitations on yourself to the extent where you hold yourself back from achieving what you are truly capable of.’
I have been involved one way or another in disability activism for the last fourteen years. I have seen people fighting for housing and personal assistance and accessible transport. Any progress in disability rights that was made prior to the recession has essentially been wiped out. (You are free to argue this point; I love nothing more than a good old-fashioned debate). Look, it took Ireland twelve years to ratify the United Nations Conventions for the Rights of People of Disabilities. Yet there is a long way to go before access to Personal Assistance or accessible housing will be recognised as basic rights. We are in the throes of the worst housing crisis this country has ever seen. Many families are living in abject poverty; it was just reported this week that current childcare costs can average twenty percent of household income. As always, the supports needed by disabled people to live independently are considered a luxury.
Is it selfish, given the current economic climate, for disabled people (aka people disabled by our society) to be demanding more? I’m sorry, but I don’t think so. In fact, I think disabled people have been very accommodating over the last few years. There was barely a whimper when the charges for medical card prescriptions were introduced. The Mobility Allowance disappeared almost without warning, with nothing to replace it. in fact the only time disabled people caused a fuss in Ireland was when James Reilly callously threatened to retract a massive amount of funding from the Personal Assistant Service in 2012. Activists slept outside the Dail in the freezing cold for two nights in protest, and subsequently the cuts were reversed, a momentous occasion in Ireland’s disability history.
And as I watched the entire rotten saga unfold from the comfort of my armchair at home, I felt inspired. Not in a sort of ‘aren’t these cripples so brave’ kind of way, but it was the first time I realised that I had been so blind. It was 2012 and my little girl wasn’t even a year old yet. I had spent the whole year fighting my own battle, trying to prove to so-called health professionals that I was not a danger to my own baby. A year where I demonstrated with grit that I was more than physically capable of raising a child to the many onlookers around me, but then spent my nights lying awake, wrestling with fear and self-doubt, allowing my own tears to sting my face. Would I be physically able to raise a toddler? Would some well-meaning person report me for being a bad parent if I made a mistake? If I was struggling and had to ask for help for whatever reason (not necessarily disability related), would my child be removed from me? And yet, there was hope. People out there were protesting, demanding to be seen as equal. Demanding respect, demanding their rights.
And it was then that I realised that I was my own worst enemy. I was succumbing to fear rather than standing up and questioning the way I was treated and perceived. It took a long time for me to believe that I was a ‘proper’ and capable mother because parenthood isn’t perceived to be the norm for disabled people in Ireland. There’s horror stories and rumours everywhere. Most damaging in my case was that little internalised voice that led me to believe I was incapable.
My friends, I would put it to you that this little voice is the single biggest obstacle to true equality in Ireland. This is the voice that tells us that we are less than, the voice that advises us not to voice how we feel ‘because no-one likes an angry crip,’ the voice that tells us that if we try harder to conform that one day we might be accepted as equals.
And this is the obstacle to true equality that I predict will be the hardest to remove. Why? Because whether your impairment is congenital or acquired, social conditioning dictates that *you* are different, that *you* must do your best to fit in.
I don’t know for sure at the time of writing this blog whether I want to work in writing or disability, or if (ideally) I get to do both.
What I do know is: Internalised oppression, I see you. I am naming you. And until my dying breath, I will strive (hopefully with others) to always challenge you.
Is ‘Activism’ A Dirty Word?
Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.
It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.
Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?
And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?
I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.
About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.
Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.
A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.
‘This is frightening,’ I texted my friend after listening to Kevin.
‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’ And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?
We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!
You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:
‘The only thing necessary for evil to triumph is for good men to say nothing’.
I’d choose activism over evil any day. Wouldn’t you?
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!
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.
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
‘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.
Hi all, this is a poem I wrote inspired by the day I’ve had. I woke up this morning and spontaneously decided to go up to Dublin for a few hours (I know, I’m a bad cripple not giving notice). So I rang the train station – no answer. Rang Athlone, Portarlington, Dublin – no answer. Frustrated, I did what any rational being would do and took to Twitter, making a complaint to the @IrishRail page. They never answered, but it was retweeted about ten times, with many in disbelief that because I didn’t give notice that there was a real chance I wouldn’t be on the train.
As I watched the responses coming in on Twitter, I started to feel ashamed. Maybe I’d taken it too far this time. Maybe I was starting to cross the line from well-meaning activist to downright troublemaker. But then it occurred to me that if it was someone else, a fellow wheelchair user, I’d be the first to cause a stink. And that if we don’t cause a fuss, we will continue to be overlooked.
Anyway, Tullamore train station must’ve been notified because, half an hour after my tweet, the kind man there answered and promised me the assistance I needed. I felt simultaneously smug and stupid, and embarrassed to have caused such hassle.
But I am not hassle. I am equal. And I deserve to be treated as such.
Don’t make a fuss
All you ever do is complain
Things really aren’t that bad for you people.
Imagine if you had been born
Sixty years ago
You may never have known the outside
Of the four walls of your bedroom.
You don’t realise how lucky you are –
A home, a job, a family –
We don’t need to hear about
How you fought for every little thing.
Contrary to what you read in fairy tales
At night, when you were younger,
One person cannot change the world.
All your anger does
Is make us all uncomfortable
(I cannot stay quiet.
The silence echoes through our small island.
Rights on paper but not in practice,
Lone wolves howling in the darkness.
I dare not stay quiet
When now there is a generation behind me
Who need to know that it’s okay
To point out things are not okay.
I shall never shrug my shoulders
And pretend to be happy with anything less
Than anything less than true equality).
What would be worse than anger is complacency
And silence, shame of causing a fuss.
Going against what we’ve been taught,
That we must be grateful.
Well, I promise to be grateful
When the simplest things are not made complicated,
When I can come and go as I please,
When the words ‘funding cuts’ don’t make me heave,
When I am equal,
And the lion roaring in my soul is quiet.