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Last Monday evening I sat on my kitchen chair, biting my lip, unable to stop the tears falling from my eyes. I didn’t want to admit it, but I was exhausted, and in so much pain. I was also frightened by how out of control I felt. How had I got here, at the tender age of thirty-six? The pain was shooting into the back of my knee and every time I stood up, my right leg crumbled beneath me.
You see, I fell in September. Outside, while crushing a plastic bottle so that it’d fit into an overflowing recycling bin. Falls are nothing new to me; I fall so often that I’ve actually learned how to fall in order to protect my head. I normally have pain for ten minutes, tops, and am then able to mosey about my normal business. But since this particular fall, my right leg and I have been at odds. I’ve been exercising, resting it, applying hot water bottles, taking painkillers, going without painkillers. Nothing seems to work.
The truth is, I have had a somewhat troubled relationship with my body. It began with the prescribed physiotherapy as a child which continued into my teens and continued through the stubbornness of my right leg which turned inwards (and still does), tripping me over. I tried in vain to straighten out my leg. I did the physio, I had botox. I resisted using a wheelchair until my early twenties. But I succumbed, and my internalised oppression tells me that this is why I’m suffering now, that this is somehow my own fault.
I’ve been really busy this year, which has left no time for writing. Trying to navigate the emotional ups and downs that come with a global pandemic, with a terrified child, has been exhausting. Then I became involved in various projects with Independent Living Movement Ireland, and suddenly I hadn’t the time to write that I used to. Lately, however, my body has forced me to slow down and reflect, and once again I find myself questioning the same things. Given this pain that I’m currently experiencing, to what extent is disability really located outside of myself? I live by the principles of the social model and one of its architects, the late Michael Oliver, once proclaimed that “disability has nothing to do with the body.” So if I believe that disability is caused by barriers, am I supposed to ignore whatever it is my body’s trying to tell me? To fight for my rightful place in society, do I need to leave my Cerebral Palsy at the door and focus exclusively on political action?
After spending too much time feeling sorry for myself, I began to consider my next move. It doesn’t look as though this pain is shifting anytime soon and I want – need – to start writing again. Maybe even start working again, more than the odd bits I’ve been doing. I transcribed a number of podcasts and compiled a collection of stories about the Independent Living Movement, and now that’s nearing completion, I’m thinking about what to do next. Finish my novel? Do another course? Compile another poetry collection? Whatever I choose to do, I know I’m going to need supports in place in order to do it. I went and got a special chopping board the other day which in theory means that I can now prep food in half the time. I put a grabrail with suction cups on my front door so that I can pull it closed behind me when I’m in the wheelchair. I have a shower chair, and a grabrail on my bed. I also have a Personal Assistant Service (reduced because of Covid) who help me do chores – they can do certain tasks that would take me hours in a matter of minutes! This allows me the energy I’ve needed to compile those stories, which is my biggest achievement this year.
And, eventually, Covid will piss off. But I will still be disabled (in the social model meaning of the word). The aftershocks of the extra money that the government is currently spending, coupled with the deep recession that we are heading into, means that the funding of a true PA service that allows disabled people to have full control over our lives, may once again be threatened, as although the legislation allowing for the provision of Personal Assistance has passed through the Seanad, it hasn’t yet been signed into law. Decisions about what kind of supports are available to us are still being made by medical experts; we are not fully trusted to decide what we feel is best for ourselves.
And while I have to silently contemplate what it means to be a wobbly yummy mummy now approaching my late thirties, I must try harder to remember that my quality of life should not, and will not, be dictated by my impairment. However, it certainly would be enhanced by having access to the correct products and services, chosen and controlled by me. I have so much more to achieve, to do and see, and to give.
I cannot be fixed. But our society sure as hell can. So let’s roll up our sleeves and keep building a better, more inclusive future.
My first attempt at a children’s story, based on a true story! Hope you enjoy it.
The morning light illuminates the cage. This is my favourite time of day, when I can sit with my backside to the warm summer sun. My favourite spot is the far left corner, where I wiggle into and huddle down. Sometimes I lie there and sunbathe, teasing Tessa. Tessa comes to have a look at me most mornings. She’s a cantankerous old biddy, and she doesn’t say much which I find rather rude. She doesn’t talk about the weather, or the quality of cabbage these days. Instead she just lies on top of the cage, giving me her best death stares. To be fair, her stares are quite frightening: her eyes narrow and fill with a hellish darkness. She would love to come in here and fight me to the death, doing her victory mews as she rested her paws on my defenceless little bunny body. As if that would ever happen. After all – my name is Clover, probably the luckiest name any bunny could have. And I am far from defenceless.
As I settle into my favourite spot, I hear a familiar creaking. No, it can’t be possible, surely? Surely, after all this time, and three previous offences those ditzy humans always remember to lock the gate? And yet, it swings open, even though I’m hardly leaning on it. I stare at it for a second, remembering my last great adventure. Those humans weren’t best pleased last time I ventured outside the cage. I remember distinctly the sweetness of the dandelions, the crispness of those weeds, especially the ones growing around the poles of the swings. It would be foolish to pass up the opportunity of a lifetime, to deprive myself of a lovely fresh morning salad.
This is the part I hate most, I think as I look down. That ground below is hard, and landing on it feels like a sharp slap. Nonetheless, down I go, wheee! Quick and painful. Ow! My poor delicate little paws. I hop over to the dandelions. Nom nom nom. These are even better when they’re fresh! This must be how humans feel when they eat at one of those gourmet restaurants.
Suddenly, I hear a clicking noise. It’s the noise of the human cage opening. There’s no escaping it: I’m busted now. Luckily, unlike humans, I can hop sideways and change direction quickly. I stand silently by the swings, eating the dandelions, marvelling at the loudness of humans. Honestly, they are so loud that I can never quite understand how they are on top of the food chain because they like to make so much noise. This is the alpha male of the pack, and he’s making a kind of whistling noise. Humans tend to make this noise when they are happy, but as I suspected, the whistling stops as he moves closer to the cage.
“Aw, are you serious?” he yells as he swings the cage door back and forth, as if he wouldn’t believe it was open unless he physically swung the door himself. Now, my Eng Lish isn’t great to be honest – the only word I really understand is “food” – but I think what he meant was “my word, the cage door is open and I believe my precious Clover has once again escaped. How awful.” It’s amazing how much humans can say in so little words.
He swings around and our eyes meet. Damn, I’ve been spotted. He stretches his arms out towards me, and for a split second, I actually feel sorry for him. I stay quietly in my spot, waiting for him to approach me. But as his cold shadow creeps towards me, a little voice whispers in my head. It’s a predator! Run, run, run! To make it fair, and because as a fellow bloke I understand the workings of alpha male pride, I allow him to come within an inch of me, only sprinting away as he bends down to pick me up. Now, as I said, my grasp of Eng Lish is terrible, but I wouldn’t even try to translate the words that I believe the male human is now shouting at me, because I’m sure there are children reading this story.
I wiggle my brown fluffy body under the expensive wrought iron gate, chuckling at the foolishness of humans. They think that they are so clever, but we animals are always one step ahead. I can’t resist stopping to look at the fear in my human’s eyes as he follows me into the front garden. Again, I feel sorry for him: he looks worried, which means he must really love me. But I can’t bring myself to let him win, and just as he’s less than a foot away, I hop out of the driveway into the Great Wilderness. The human follows me but I hop into a bush on the green, and when he comes nearer, I hop away again. I’m having such great fun. Who knew life could be so exciting?
The Great Wilderness is not how I imagined it at all. There’s not as many trees as I thought there would be; it’s more like a collection of human cages in a circle. Their gates are open, so I tentatively hop into the next human cage to see what it’s like. The menu is absolutely stunning, and so well presented. I would highly recommend this restaurant: the variety offered here is second to none. Yellow flowers, orange ones, purple ones – so many options. Where do I start? I nibble at the yellow one first. YUM! It’s so light and refreshing. I love the delicate aroma of these purple ones – just out of this world. Suddenly, I hear a human shriek. Honestly, they are so noisy – why the need to vocalise every little thing?
This human is a woman, and she’s not happy at all. Maybe I was supposed to make a reservation or something? Surely not – there’s no other customers? I only hope she appreciates the perfectly bowl-shaped hole I made in the middle of her lawn. It could be handy for storing her own food, or if she wants to feed me – hey, it’d be rude to stop her. She’s shouting and waving me away, even though I’m not finished. I’m not exactly impressed with her style of customer service – she’s a bit rude and abrupt, if you ask me. Though I must admit that the food is just too good for me to snub her place altogether. I make a note to come back later.
I’m tired now and contemplating going back to my cage to chill and sunbathe when I hear a slight rustling on my own front lawn. The sight of Tessa’s yellow eyes frighten me. She’s lying there like she owns the place, and I’ve a good mind to set her straight once and for all. I tiptoe towards her, conscious that her eyes are on me all the time. Suddenly, there’s a hiss, and she pounces, her face mere inches from mine. Perhaps this wasn’t the best idea after all. Nonetheless, I am always up for a challenge. I hop into the shrubs, waiting for her to follow me before hopping back out. I clamour towards the back garden, frantically looking around for somewhere to hide. Bunnies aren’t good at climbing trees. My only option is to hide behind the smaller human cage – I think I’ve heard them call it a “shed”. It must be like a holiday home or something. What is humans’ fascination with cages?
I curl up for a nap, confident that I am safe at last. One thing I will say for cage living is that you don’t get any of this drama – this adrenaline is too much for me, I’ll admit. But I should know by now that Tessa is not stupid. Annoying, certainly, but not stupid. Her feline shadow blocks the little sliver of light that was coming through. The yellow in her eyes has adopted a sort of ominous, luminous glow. Is this how my life is going to end? Surely not. Yet, she is edging towards me, her slinky body preparing for a chase. I turn to run, but it’s too narrow in here to build a proper momentum. That’s it, I think, as my short bunny life flashes before my eyes. I leap out towards the sunlight to land into the arms of another predator…
…my smiling human! Normally, I would struggle until he let me go, but to be honest, I’d much rather not be ravaged to death by a deranged cat. He puts me back in my cage with some fresh food, chuckling as he locks the hutch. Right now, I don’t care. I’m safe and back in my warm cage. Tessa looks up at me, and I press my bum against the cage in defiance. I believe in this instance, you humans would say “na-na-na-na-na.” Tessa understands, and slinks away in disgust as if to say “you’ve won this round, but I’d watch your back if I were you.”
I ignore her, stretching out with my full belly, exhausted after my busy day. I’m pretty confident that tomorrow will be quiet and boring – I can’t imagine the human leaving the cage door open again for a while. Still, I can lie here and sunbathe in peace, while dreaming of my next great adventure.
Having a lot of free time on our hands, all of a sudden, can be quite a dangerous thing. In recent days I find my mind wandering into dark, shady corners that I would normally protect it from, and thoughts that can become all the more sinister when overshadowed by a global pandemic. These thoughts vary from day to day. Lately I’ve been giving much thought to my career choices. At first, these choices were both sensible and socially acceptable. I did a good Leaving Certificate and decided to study English Literature in Trinity College. In fourth year, i was presented with another choice: to throw myself into my studies and get a good degree, or to compile a portfolio impressive enough to earn a place on the MA Journalism course in DCU. I didn’t have the energy to do both to the standard I might have liked, and I wept for two days when I got the rejection letter from DCU.
Maybe writing’s not for me, I thought. Maybe it’s just a hobby. It would be too difficult to try and pursue a writing career.
So I applied for jobs. Many jobs. The rejection emails and letters piled up on my desk as I continued to send application after application. It wasn’t impairment related as I never disclosed my impairment on initial application forms. Being unemployed can leave one feeling unhinged. I just wanted something, anything. My prayers were answered when Offaly Centre for Independent Living offered me a job. A good job. If I played my cards right, a permanent job. I was so relieved. I did everything I could to hold onto my job. It took the birth of my daughter for me to realise how unhappy I was. I was a PRO, in charge of the monthly newsletter. I was writing lots of words, just not the words I wanted to write.
I stayed for seven years. I stayed because it was safe. I stayed because despite being seemingly incapable and inadequate, I strongly believed in the philosophy of independent living. I stayed because I thought that no one else would take me with so little experience. These thoughts wreak havoc on one’s self-confidence and belief.
But underneath it all, I still wanted to be a writer. There was a major flaw in my aspirations, however: in order to achieve this, I was going to have to write. i was going to have to be interesting. I was going to have to be honest about some things, both with myself and others. When I survived a nervous breakdown in July 2014, I knew things had to change. I knew that I would have to take a risk and show my words to real, breathing people.
The blog – this blog you’re reading now – was only ever intended to be a temporary thing. It wasn’t supposed to be a disability blog, or a blog about activism – it was supposed to be my ticket away from all of those things. As time passed, however, it became ever more apparent that those two parts of me – writing and activism – could not be separated. The urge to communicate the real message of Independent Living and equal rights swelled within my veins until the dams could hold no longer, bursting all over the keyboard. I began to despair at my lack of control. I wanted to be a writer, not “just” a disability writer. I fought the urges, and lost. An article about someone “bound” to a wheelchair, the perpetuation of a victim narrative that no self-respecting disabled person would consent to be a part of, would bring me back to the keyboard, typing in a fit of rage. I felt I had a duty to add to conversations that were about me yet exclusive of my voice.
I fell into a rabbit hole.
“Be careful of being pigeonholed. It could destroy your career before it starts,” I was warned.
“This disability stuff can get pretty heavy for a blog,” another person told me. Still, I couldn’t take their advice. An invisible magnet always drew me back to independent living and activism. Even now, that can get annoying, but I’m tired of fighting against writing what comes so natural to me.
As I mentioned earlier, lately I’ve been pondering the word “writer” and whether it really applies to me. I’m not a weekly columnist. I don’t have a published collection of poetry or stories. I’ve tried to write the same novel three times, with each attempt ending in me leading the character into a cul-de-sac so deep that metaphorical suicide seems to be the only way out. So have I really earned the lofty accolade of writer? I would be inclined to say, no.
My vision of being a writer was having the ability to sit at my desk and stare at the screen in awe of my own words. My vision involved churning out poem after poem, story after story, without a moment’s hesitation. It involved generous pay cheques and prestigious awards, but above all, I thought being a writer meant feeling secure and confident in sending your precious darlings into the world. That there would be a point where I could produce a piece of work that I was happy with and confident with. I haven’t reached that point, because as I’ve learned with the support of writer friends and various online communities, that’s not what being a writer is.
Being a writer is in fact tortuous. Many fellow writers that I’ve had the privilege of speaking with over the last few months still struggle within the clutches of inadequacy, imposter syndrome and crippling self-depreciation. It seems that a lack of confidence, a fear of being exposed is par for the course when you are a writer. It also seems that a lack of self–belief as opposed to a lack of writing ability is a writer’s biggest enemy.
I write because I can’t not write. I write because when I’m not at the keyboard playing with words, the clouds in my head become heavy and dark. I write because I enjoy putting different combinations of words together. I enjoy trying to capture scenes, emotions, outer injustice and inner struggles.
And, more often than not, writing keeps me from lingering in those dark corners.
In the small corner of my office where I sit and hide, hoping words fall on my page,
I see the sun is shining from the confines of my cage.
I lift my weary arms to type, but don’t really see the use
When the world’s alight with chaos, the toll of many years’ abuse.
I try to write a story, to leave reality behind,
But deep inside I know there’s more sinister things on my mind.
Will I be around to see my daughter grow?
Will I see my friends and family again? Does my husband know
How much I love him?
And does it really matter?
It’s time to reflect on how God laughs at our plans
How we think we are superior
But yet this intense suffering was caused by man.
Did we ever have tomorrow?
It was never guaranteed.
Here is merely a reminder
Of what we really need.
We need love, hugs, and companionship,
A roof over our head,
Access to basic sanitation
To be warm, dressed and fed.
We don’t need the big house
Or to have two cars in the drive,
Not when the main goal is now
Simply to survive.
And if we are so privileged
To be here when it ends,
What will remain are memories
Of long chats with our friends.
But it’s dangerous to trivialise
And paint over all the cracks
When an even more insidious illness
Will no vaccine ever hack.
That voice inside our head –
The one that loses hope,
The one that says we’re better dead
And then hands you the rope.
That voice poses as a friend
But will not hush until you end
The voice, or your life –
I hope you find the energy to fight.
And if you feel overwhelmed
Take things day by day,
Allow yourself to shout and cry,
To feel anger and dismay.
Embrace the disappointment
Of all that won’t now be.
When will this be over?
We’ll have to wait and see.
And so I take this opportunity
To thank each and every friend
For their companionship, love and thoughtfulness
And I promise when this ends
Never again shall I take for granted
Your chats and your embraces,
But for now, try to keep a smile
Upon your worried faces.
Because fear is infectious too
It paralyses to the core.
We only ever had today:
It was true then, is true now, and will be the case evermore.
Invisibly she sits
In the cocoon of her own home
Every day, alone
Churning out her little poems.
As a child she played writer
Imagining awards and trophies,
Never thinking for a second she’d
Be isolated and alone.
She looks outside her window
At the suits rushing to work,
Children on the bus
Wearing the garb of their school.
They all look the same,
And at first glance one couldn’t
Distinguish them by name.
The men in grey suits drive past
In their shiny, new cars –
Symbols of success –
They have made it far –
While she huddles into the safety
Of her oversized dressing gown;
She huddles into it so fiercely that
Within it she may drown.
She lowers her head into the robe
Hoping that they can’t see
And then her keyboard rages against the silence
Of perfect domesticity.
She lays the words before her,
Hesitant but proud,
The freedom to say these dangerous things
That she’d never say out loud.
But now, she feels pathetic –
She feels tired, and weak.
These words floating before her
Are not only hers,
But also belong to
Those who cannot speak.
She saves them in a Word file
Never to be seen
Far too dangerous to be unleashed –
People are far too mean.
What she shares is softer
Without the anger and the spite –
People take personally everything she writes.
They tell her she’s a natural
And should write for the paper
Ignoring that she has no time
For this publishing caper.
Because unfortunately, when day is spent
And the kids are tucked up in bed
She doesn’t have the energy
To wrestle within her head.
Instead she packs the lunches,
And closes her eyes to sleep.
These kids won’t stay young forever
And so, for now, these words can keep.
Two months ago, how would we have described the kids of today?
The word ‘snowflake’ was bandied around an awful lot.
They probably had no empathy for others.
They spend too much time on their tablets and not enough time outside.
They were selfish and obsessed with material goods. Always wanting more. More toys, more technology, more games.
And now we find ourselves in the middle of a global pandemic, the biggest threat many of us have faced in the history of our existence.
School and extra-curricular activities cancelled. No visits to play centres, not even to our local playground. We cannot even visit aunts, uncles, grandparents or friends. No more playdates or day trips.
In the midst of it all, it is the kids, not the adults, who are coping so well.
They are using their tablets to keep in touch with each other, and have learned quickly how to use technology to host group calls (I’m now only becoming used to Zoom calls). They watch YouTube for inspiration for art projects.
With no busy schedules, they have to spend more time at home, maybe picking up books that they otherwise would have had no time to read.
They use Google to learn about animals, other countries, famous people.
They want to help. They make cards for the frontline staff. They write letters to nurses thanking them.
Of course, sometimes they play games on their tablets. Maybe for longer than they should. And that’s ok too.
They are learning about the emotions that our generation of parents have been accused of shielding them from for too long. Sadness. Disappointment, Anger. Loss. We cannot give them everything they want, and they are learning to cope with that.
We are no longer raising the snowflake generation. We’re raising the generation of children who will change their world through kindness, empathy, understanding and compassion. We’re raising a generation who understand that physical and mental health must go hand in hand. We’re raising the generation that one day will make the world a better place.
And in fact, they already do. And I for one am very proud.
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.
If you are reading this on 8 February 2020, it’s election day! Even though the general election in Ireland was only officially called about a month ago, it feels as though the pre-election propaganda has been going on for months and I’m sure, just like me, you are all tired of it, dear reader. (And speaking of being tired of people droning on, many thanks to those of you who read the throwback blogs I’ve been sharing on social media every day since this election was announced. You are truly my stars).
Admittedly, although there have been a few leaders’ and political debates on the telebox over the last few weeks, I haven’t actually sat through a whole debate. However, I have seen and heard small glimpses of them and it was like watching toddlers fighting over who drew that lovely picture. My own daughter will be eight on Sunday and I consider her too old for “he said, she said” sort of nonsense. Micheal Martin and Leo Varadkar have been particularly irritating. Neither of them have done the disability sector any favours over the years. The cutbacks began in Micheal’s time, and Leo has been the proud Leader of a party that once proposed the complete obliteration of the now precious Personal Assistant Service (which was proposed by James Reilly, then Minister for Health, in 2012).
People haven’t forgotten these things, it seems. Things in Ireland are on the cusp of change, with many once-sceptical people declaring their intention to vote for Sinn Féin. A decade of poverty, homelessness and unemployment have driven many people to the edge, with many of us still looking for signs of this economic upturn we’re supposedly in the midst of. I think it’s Orwellian of the government to assure us that things are improving when the cost of living is so high, when over ten thousand people (just three thousand people shy of the population of Tullamore, my home town) are homeless and those who emigrated during the lows of the recession saying that they couldn’t contemplate moving back in the near future to a country offering few prospects of career progression. As a struggling freelance writer, it’s easy for me to empathise with their point of view.
With the all-important vote here now, I’m still undecided who will be my number one. I know it’s so important to use my vote – not to would be a slap in the face to those brave and fearless suffragettes – but looking through history, I’m starting to wonder whether it’s really the way to make real change. Please don’t think that I’m trying to discourage people from using their vote – far from it! – but it was an Orwellian character, the everyman Winston in the dystopian novel 1984, who said –
“If there is hope, it lies in the proles.”
What I mean by this is that we need to be fearless and unflinching in our own convictions, and it is our responsibility to ensure that those who are elected into power follow the wishes of the people. That can only happen if we stand up and use our own voices with confidence and conviction. The people I admire in life are not politicians; they are ordinary people who were not afraid to make a stand. Rosa Parks, an ordinary woman, one day decided that she had had enough of being segregated because of the colour of her skin and initiated the Montgomery bus boycott in 1955. Subsequently, she became a symbol of resistance against racism in the USA, collaborating with Martin Luther King Jr in her pursuit of justice.
Seven years later, Ed Roberts, who had contracted polio as a teenager, fought to be accepted into the University of California, Berkeley. At interview stage, he was famously told “We’ve tried cripples before and it didn’t work.” His subsequent acceptance into the University, along with some other severely impaired students, paved the way for future disabled students to gain entry. Roberts had a revolutionary idea that he was going to recruit and employ his own “attendant” as he wanted a life independent from his mother, Zona. He was going to “hire and fire” this attendant, and instruct them to carry out tasks as per his desires, not just based on what he was perceived to “need” by others. This left Zona free to pursue her own interests and subsequently Ed was not a burden on his mother. The establishment of the Center for Independent Living in 1972 heralded a monumental shift away from the misperception that disabled people could not make their own decisions or manage their own lives. Its establishment led to the philosophy of Independent Living spreading all over the world, even coming to Ireland.
The decision to bring independent living to Ireland did not come from government. No, it came directly from disabled activists themselves, including Martin Naughton, Michael McCabe and Donal Toolan. It was disabled people that took it upon themselves to revolutionise how services were being provided to disabled people at the time. This led to the founding of the first Irish Center for Independent Living in 1992. One of their first major projects, Operation Get Out, saw disabled people moving from unsuitable and outdated institutions into their own homes, where they could make both basic and life-changing decisions with the help of their Personal Assistants.
Over the years, disabled activists in Ireland have continued fighting and pushing for equality. Dermot Walsh is remembered for his work with Dublin Bus, and over the years, many disabled people have joined the campaign for accessible transport. In 2012, when the cutbacks to PA services were so cruelly threatened it was disabled people themselves, protesting for three days and nights outside the Dáil, who reversed that decision. Sadly, we have had no time to pat ourselves on the backs, because an activist’s work is never done. Many young disabled people remain trapped indefinitely in hospitals or unsuitable residential homes. According to research carried out by Independent Living Movement Ireland in 2017, 45% of those lucky 2,200 people in current receipt of PA services only have an average of forty-five minutes’ service a day, and people who have the highest personal care needs are being prioritised.
Can we really expect the government to bring about radical change? Or does the real answer lie closer to home? I have been reminded too often lately that life is short. How do we want to spend it? I understand that fighting and campaigning can be tiring, but believe me, complacency is a far more dangerous prospect.
I remember in 1997, when I was in sixth class in primary school, we had to write a composition about what we thought 2020 might look like. Some of it was bang-on, like having the ability to shop online and being able to pay for things by tapping your credit card. Of course, other suggestions were ludicrous, like having flying cars and being able to travel back and forth through time. But if you had told pre-pubescent me that in 2020, wheelchair users would still have to give notice to travel on public transport, that disabled people would still be trapped in unsuitable nursing homes and that we would not have access to the most basic services that enabled us to live independently, I don’t think I’d have believed it. Because it’s not only unbelievable – it’s scandalous.
The good news is that we can solve these things – us, the proles – by speaking out, saying no and rejecting the status quo.
Governments don’t always bring about the change we need. And they don’t want to reveal the dirty little secret: we, the ordinary people have that power. We’ve had that power all along, the freedom to use our own voices, to speak up on behalf of our peers, to say that the status quo just isn’t good enough any more.
Do you believe that one person can make a difference to the world?
And if so, why can’t that one person be you?
So, it’s happened, as many predicted it would – a general election has been called for the 8thFebruary, 2020. What an underhanded move, don’t you think? To call an election due to take place within three weeks? The short timeframe leaves us all scrambling to make our cases, to highlight pressing issues to election candidates in the hope that somehow, our electorates will improve our quality of life.
However, there is something that’s been bothering me, something that I need to clarify once and for all with you, dear reader. You may have noticed, that as a writer, I am in danger of pigeon-holing myself; after all, the name of this blog is “wobbly yummy mummy”. The keywords I use most, according to the word map located to the right of this blog are “disability”, “independent living” and “equality”. When I established this blog six years ago, I intended it to become a platform for a diverse range of subjects, not just disability activism. Yet, I don’t think of it as time wasted, nor do I worry whether it will impact on my future writing career. I’m proud of this blog, and what it represents. Above all, my writing serves as a reminder to all who read it that –
Disability Rights Are Human Rights
This reminder comes as the nation ramps up to challenge those who think they hold the solution to the many problems facing people in this country right now. Often, when organisations purporting to represent the needs of disabled people deliver their manifestoes to the vote-seeking candidates, they are told by the election hopefuls that they understand the importance of services for disabled people, that they want to protect those who are “vulnerable” within our society. That said, few candidates understand that it’s not our impairments that make us vulnerable, but rather the lack of access, services and respect that we as disabled people face on a daily basis.
The reality is that disabled people’s lives are affected in deeper ways by the government’s unwillingness to treat us as equals. It has been recently reported that Ireland is the worst country in Europe to have an impairment or disability, and this doesn’t surprise me in the slightest. One of the biggest challenges is that disabled people are still treated as “patients”, people who, in the words of prominent activist, the late Martin Naughton “are to be cared for rather than cared about.” We have to ask ourselves whether things can ever drastically improve for disabled people in Ireland as long as the HSE is the principal funder of disability services. Does this mean that disability will always be seen as a medical issue rather than a form of social oppression, like racism? Which, of course, is exactly what it is.
It would be amiss of me to imply that there have been no glimmers of hope in the last three years. On 7 March, 2018, Ireland finally ratified the United Nations Convention on the Rights of People with Disabilities. On November 19, 2019, a motion was brought to the Seanad by Donegal TD Thomas Pringle in collaboration with NUI Galway and Independent Living Movement Ireland (ILMI) to legislate for a Personal Assistant Service. This has been a monumental step not only towards securing a service for disabled people often described as “my arms and my legs” but bringing about a change in the overall narrative of disability. It was the first time in a long time that I observed the language that was used being focused on a rights-based approach rather than the usual “vulnerable” narrative. And although the safety of the future of personal assistant services is still not guaranteed, I feel optimistic about the future of disabled people right now.
But – and there’s always a but – we cannot and should not rely on elected representatives to speak on our behalf. Historically, disabled people have had to suffer the humiliation of not having their voices heard. This starts on a seemingly innocuous level, in our everyday lives, when our family members or personal assistants are spoken to instead of us being spoken to directly. This is referred to as the “does he take sugar” syndrome, and evolves into a warped reality where the views of disabled people are only taken seriously when they are endorsed by a “disability organisation”. I know that my little blog does not have the reach that I would like it to have, and while I would never claim to be the expert on disability issues, I know how exclusion, lack of access and discrimination, both direct and indirect, impacts on my everyday life.
My point is – we need to trust ourselves. We need to truly believe that we as disabled people, and we alone, know what’s best for us. If we don’t believe this – and it’s shocking how many disabled people doubt themselves because of internalised oppression – then the big decisions will be made for us. Where we live, who assists us, our dreams and the nitty-gritty of our own lives will never be in our hands.
So to reiterate: The issues facing the population as a whole also face disabled people.
For example, disabled people are aversely affected by the housing crisis. Many adult disabled people, just like non-disabled people, are still stuck living at home with their parents. Others are living in hospitals or nursing homes for the elderly because there is no accessible housing available or because they don’t have access to Personal Assistant Services. There are no figures available to show how many of the 10,000 people who are currently homeless are disabled people, but logically people with a varied range of impairments would be logistically unable to access certain hostels and emergency accommodation.
The rising costs of living means that disabled people in Ireland (like many others) are forced to eat nutritionally deficient food such as breakfast cereal, pasta or packaged soup, because they must save money for heating and other bills, or because they lack the assistance needed to prepare a more substantial meal. And the free travel pass, which was intended to reduce isolation among disabled people from their communities, is useless when buses are inaccessible and both urban and rural train stations are unmanned.
Should I have the chance to meet any of the election hopefuls face-to-face, I shall be reminding them that disabled people are demanding their human rights, that the government urgently needs to invest in all of our lives, that we should have access to the same services and opportunities as the “non-disabled” population and, above all, that we have been very patient. We have watched the deterioration of vital services and yet the outcry has been barely audible. We have tolerated cutbacks, the denial of basic rights, the compartmentalisation of our needs into “special needs” for far too long.
We refuse to do it any longer.
We refuse to be spoken for any longer.
Henceforth, we will be collectively using our voices and demanding our human rights.
(This article was first published in the Tullamore Tribune week ending 20 December 2019. Many thanks to Ger Scully, editor of the Tribune, for this).
On the 19 November 2019, the possibility of legislating for Personal Assistance as a legal right was debated by the Dáil. The motion was brought forward by Donegal TD Thomas Pringle from Independents For Change, who worked in collaboration with Independent Living Movement Ireland (ILMI) in promoting the right for disabled people to access Personal Assistance in Ireland.
The Personal Assistance Service and Independent Living are intertwined. In their truest form, Personal Assistants are not “carers”, nor do they have the right to make decisions on behalf of the disabled people they work for. A Personal Assistant has been defined by many as “my arms and my legs”, in other words, the role of a Personal Assistant is to assist with or perform tasks that the disabled person (known as a “Leader”) cannot do for him or herself. The Leader is considered to be the expert in their own needs and directs the Personal Assistant on what he/she wants done. When the service is delivered properly, the PA does not “look after” the Leader, but rather enables him or her to live a fulfilling life – enter employment, access education, enjoy social events and raise a family – depending on the Leader’s own life goals.
In theory, a Leader’s service is customised to suit his or her own lifestyle. However, in reality, only a select few disabled people in Ireland are enjoying the full benefits of Independent Living. Since the onset of the recession in 2008 the lack of financial resources, coupled with a growing demand for a Personal Assistant Service, has led to overmedicalised assessments and more stringent criteria, leaving many disabled people with little or no service. Emphasis has been placed on “high dependency needs” such as feeding, showering and dressing. While this might make sense to the powers that be, in reality this can lead to a depressingly low quality of life for the Leader concerned, being all dressed up and nowhere to go.
Many Leaders make a distinction between a “home-help” service and a PA service. A home help works to a rota provided by a care organisation and merely assists clients with basic tasks such as Personal Care and feeding. Often, a client has little or no say in what tasks they can be assisted with, nor do they have control over who delivers these tasks. It is not uncommon for a “client” to be assisted by many different people, and a disabled person might not know who is assisting them from one day to the next. Conversely, a Personal Assistant is recruited by the Leader themselves, and matching personalities, as well as a willingness to carry out certain tasks, is a crucial element to the success of any PA/Leader relationship.
The original intention behind the service was that the Leader could dictate what they wanted to do and when, just like every other person in this country. Moreover, the philosophy of independent living espouses that the Leader should choose who assists them, what they need assistance with, and when. A distinct benefit of the PA service is that it reduces our reliance on our family and friends so that we can enjoy a relationship as equals, not as “carer” and “cared for”.
However, in spite of the ratification of the United Nations Convention on the Rights of People with Disabilities (UNCPRD), Personal Assistant Services are not currently a right for disabled people in Ireland. Consequently, this leaves the service vulnerable to the constant threat of cutbacks, as the government illustrated in 2012 when it endeavoured to eradicate the entire service overnight. People power alone, in the form of demonstrations outside the Dáil saved the service, but the PA service in its current form is not allowing disabled people to enjoy a reasonable or enjoyable quality of life. A report published by ILMI in 2017 conveyed that nearly half of people in receipt of PA services were getting the equivalent of 45 minutes a day. This is entirely unacceptable and clearly illustrates the need to legislate for PA Services.
Therefore, the motion which was brought before the Dáil and subsequently passed unanimously was a hugely historic day for disabled people in Ireland. It heralded a shift away from the notion of disabled people as passive recipients of care to people who had human rights and who deserved access to the tools that enable them to participate equally in society. For the first time, Personal Assistance was debated in the Dáil using the language of rights, signalling a shift away from the misperception that disabled people are merely passive recipients of care.
Alas, although this small battle has been won (and how sweet the victory does taste!) the work for those who want equality for disabled people is far from over. We cannot afford to be complacent or to take anything for granted. Now is the time to educate people, to create awareness of the importance of our PA services and to ensure that our government delivers on its promise to make independent living a basic human right.