I can’t believe that I’m missing my favourite class – English – for this waste-of-time, bullshit conversation. Sr. Frances, the school secretary, is like a dog with a bone; once an idea becomes lodged in that head of hers, she won’t let go, and today it’s driving me insane. I sway from side to side on her swivel chair, flashing my sweetest grin at her and ignoring what she’s saying. I don’t have time for this. She’s presented me with the most old-woman wheelchair she can find and she’s trying to convince me to use it to get between classes. Those falls can’t be good for me, she says.
Nonsense, I wave my hand. My nickname is “Bouncer” or “Springer” because I’ve springs in these titanium knees. I fall, I bounce up again. It mightn’t look ideal from the outside, but it’s just the way my body works. As long as I can walk, I refuse to sit in something that looks like it came out of a nursing home and relinquish whatever little control I still have over my life to be pushed around this school. Now – I stand up and beckon my assistant Anne to follow – let that be the last of it. I concentrate hard as we walk out of the office. Falling over now will do nothing to strengthen my case. Anyway, what does she know? I am more acquainted with this wobbly body than anyone else. I’ve cycled the couple of hundred yards to school every day for six years and have spent my days traipsing from class to class. I’m fitter than I’ve ever been. I’m only nineteen, and if I start to use a wheelchair now, I’ll become lazy.
When I receive the Leaving Cert results and accept an offer to study English in Trinity College, I also receive an invitation from the Disability Officer, Orlaith O’Brien, to come and discuss my access issues. In this meeting, it’s decided that to get maximum benefit from the course, I need a number of accommodations – an on-campus room, notetakers, a library assistant, notetakers for lectures and, an electric wheelchair. I shake my head with such vehemence that I’m surprised that it doesn’t roll from my neck and bounce around me on the floor.
“I have a mobility scooter,” I explain. Because I haven’t brought it with me today, Orlaith doesn’t see that I don’t mean mobility scooter as much as I mean small tractor. It was a gift from my dad, a sturdy thing well capable of handling a big load of shopping, especially after we put a large basket on the back of it, but it’s huge. It won’t fit into the lift in the Arts block, but I could abandon it downstairs and walk to whatever room my tutorials were in upstairs.
By the end of my first day, I’m so overwhelmed by trying to get to tutorials on time, I’m in tears. I know it isn’t just first day teething problems. Even though I only have twelve teaching hours per week in total, many of these are grouped together – three sessions in a row. I need a wheelchair, otherwise it won’t be doable.
My friend Emmet (the one I wrote this blog about) is kind enough to lend me one of his electric wheelchairs until the college arranged for an Occupational Therapy assessment. (I’d already had an assessment in Tullamore, about a week before starting college. It took five minutes and went as follows:
OT: Oh, so you already have an electric scooter?
Me: Er, yes…
OT: And you are fully ambulatory?
Me: Kind of. But I fall a LOT.
OT: Ah sure you’re grand then. Why are you looking for a wheelchair?
End of assessment.)
Trinity Student Disability Service isn’t happy and so I’m referred to OT expert, Bethan Collins, who also lived on campus, to get a proper wheelchair assessment. Bethan doesn’t need to be able to see to know that I need a wheelchair. An application to some European fund proves successful, and I’m given my own first ever electric wheelchair by the middle of November 2003 (The cobbles had already rendered Emmet’s wheelchair defunct – oops). And sure, it means that I’ve no excuse to be late for lectures, as I vibrate across the cobbles, but now I can also go grocery shopping, browse Grafton and Henry Street in my spare time, and go for class nights out in The Duke. It gives me the freedom to embrace all aspects of college life, and this I do with wholehearted enthusiasm!
Yet, despite being happier than I’ve been in years, there’s still that lingering voice, the one that says Don’t lose your mobility. I continue to trudge across Front Square to the student shop for my evening chocolate, ignoring the twanging in my knees when I fall. It’s 2004, and there’s no level pathway in Front Square. I’m not supposed to take the wheelchair across it, but when I lose track of time, entering the Arts Block through the Berkeley is just such a faff; who has time for that? I like to think that it was my destruction of two electric wheelchairs that led to Trinity revisiting their plans to carve a smooth pathway through Front Square, which they finished in 2011, four years after I graduated.
I don’t bring my wheelchair home to Tullamore at weekends, because my home house isn’t accessible. That means walking around all weekend, whether it’s to do shopping, walk the new Jack Russell puppy Fred, or on a night in the town. It’s exhausting, but I pat myself on the back and tell myself I’m doing the right thing. I’m still walking. I’m also still falling. My falls are infamous, as is my ability to laugh them off. When out drinking with friends and I fall in the pub, we all laugh at my expense, and I swell with pride. It doesn’t even hurt! Once, I slide across the floor of our local shopping centre, and I hold my hands in the air at the end, a la Ozzy Osbourne. I’m invincible! I don’t need a wheelchair!
In 2007, I move to Portlaoise and rent a terraced house in St. John’s Square. There’s a shop and a takeaway just around the corner, but I find that I’m struggling to walk that far. Nevertheless, I continue to do so, even though my legs hurt. The house isn’t wheelchair accessible, but the lovely landlord has built a special shed so I can store and recharge the electric wheelchair that Trinity has gifted me. A few months later, we move to an accessible council house, but the wheelchair isn’t working properly and since the HSE won’t service it, it rusts away in my spare room. Anyway, what would I need a wheelchair for? Don’t I manage just fine without one? In 2009, I acquire a new tricycle, which I use to do more errands. Sure, walking is becoming increasingly painful, but that’s probably my own fault. I’m not exercising enough. I just need to push myself a bit more, that’s all.
The dawn of 2011 brings with it new resolve. This will be the year I start walking for long distances again. Having moved back to Tullamore the year before, I cycle everywhere. I push myself to get fit; new year, new me. I start writing again, sending pitches to every publication I’ve ever heard of. By June, I’m exhausted, and progress begins to stall. My brain, alive with ideas, words and phrases, turns to mush. Also, I’ve been so busy, that I neglect to notice that I’m three weeks “late”. The test doesn’t lie: I’m six weeks pregnant. Delighted, yes, but shocked.
I’d always assumed that, in the event of me getting pregnant, that I’d have to start using a wheelchair straightaway, but ever determined to prove a point, I instead start using a rollator, which I’ve never done before, and keep walking until I’m thirty-four weeks’ pregnant, stopping only because a fall in my hallway means that I can’t walk anymore. After giving birth to Alison, I’m walking with a rollator within twenty-four hours and back walking normally (with a rollator) within a week. As a little family, we go on day trips to Portlaoise, and I push the heavy buggy, leaning on it for stability, proud of myself. Sure, I’m exhausted, but what new mum isn’t, right…?
Alison was always going to be an only child, and I was determined to give her everything I had. I place her on the floor and get down and play with her. I pull out all the toys, play and read with her, resolved that she will not be at a disadvantage because I am a wobbly mummy. I can’t change her nappy on the floor, so I either bring her in the buggy or, as she gets older, lure her into the spare room with a toy, so that I can lift her up and lay her on the bed.
In 2014, I purchase my first electric wheelchair. Not because I’m finding it difficult to walk, but because I want to be able to enjoy Alison and bring her places independently. I still walk short distances, and struggle to walk long ones, as we do not have an accessible vehicle at this point. I can feel myself getting tired more easily, but what do I expect with a toddler? I don’t use the wheelchair unless I really have to, or unless I have Alison with me, as I can’t keep up with her on foot. My mantra always is: I don’t want to get lazy, and I don’t want to lose my mobility. Continuing to walk, however tiring or painful, is something I cling onto like a badge of honour.
Having the knowledge I have now, about my hip, means that I look back on the last ten years a bit differently, and with a bit more kindness towards my former self. I remember in 2017 going to Dublin and meeting other writers with Cerebral Palsy, older than I, who seemed to walk without difficulty, and feeling ashamed of myself. I was getting lazy. I truly believed that losing my mobility was my own fault, for not pushing myself, for giving in and using these mobility aids. Yet the more I tried, the sorer and more exhausted I became. Of course, I had no idea at this stage that I was also contending with undiagnosed hip dysplasia and arthritis. I always pushed my body to its limits, walking further than I was able, but afraid to admit to it in case it was seen as a sign of weakness. Now, almost ten years later, I’m proud that I managed it, but at what cost?
I have fond memories of when my mobility was better. Like the summer’s day in 2004 when JP and I bought a telly for my campus bedroom, and we pushed it home from Henry Street to Botany Bay in Trinity on the electric wheelchair. A particularly stormy day in 2005, holding onto poles on O’Connell Street, trying not to blow away as I made my way to the Luas on Abbey Street. Legging it down Nassau Street after the infrequent 14As, tired from working in Trinity all day, so that I could get back to rooms in Rathmines. Walking around Front Square in a dress on a sultry May evening, often in the flimsiest slip-on shoes you can imagine, marvelling at how the Trinity Ball changed the atmosphere around the campus.
I used to hoover on my knees. Every Friday, I would pull out the furniture and hoover and mop behind it. I used to be the gardener in our house, and I’d spend hours pulling up weeds, enjoying the silence and the thoughts in my head.
Sometimes I feel a mere shadow of myself, a shell of the stubborn mule I used to be. But then, I remind myself to cop on, and to unbind myself from the ableist shackles that have worn me down. Had I taken a hybrid approach to things earlier, maybe I wouldn’t have done so much damage to my hip. I don’t regret the life I’ve lived, but the things I’ve asked my body to do over the years range from being a tad unreasonable to batshit insane. And now, at forty-two years of age, with a hip replacement, I’m restricted from doing certain things for safety reasons. I’m learning that this doesn’t mean that I’m lazy or not trying hard enough. It means that I’ll have to do things a bit differently, a bit more safely. As boring as that is, that’s where I am now.
Perhaps this hip surgery was the reminder I needed that it’s not realistic to always expect so much of myself. Maybe it’s okay to put my physical wellbeing over the need to prove something to the world, and embracing my limitations is one of the most powerful things I can do. But deep down, I’ll always be that belligerent schoolgirl, chancing my arm. After all, I owe her so much for getting me this far, because she always pushed herself.
