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Thursday Thoughts: Going on a Job Hunt
As I continue to recover from the hip replacement and five years of chronic pain, I’m rediscovering the joy of getting out of the house again. I’ve spent the last five years staying at home, only going out when necessary, such was the power that crippling depression had over me, so going out regularly, even if it’s just for a walk down the canal, feels like heaven. But it’s becoming apparent that getting out is costly. Even a bar of chocolate costs two euro, if not more. The cost of living has exploded, with things nearly costing double what we paid for them during the pandemic. I’m no longer a victim of chronic pain, and I know that I’m going to have to get a job. And it’s not just that I have to – I want to. I want a steady homemaking-physio-work-writing routine. It doesn’t bode well that even just typing that sentence is tiring me out, but I’m confident that once I get into the swing of things I’d be laughing.
There’s a slight problem, however. Okay, scratch that – there’s an enormous problem. I’ve done lots of voluntary and freelance work in the last eleven years, and I’ve done it while raising our daughter and keeping the house going. However, I haven’t had a steady job with a predictable income since 2015, so I wouldn’t call myself a catch on the auld job market. When Alison was in primary school, it suited all of us for me to be at home, ready to dash if the school telephoned or texted me. Now Alison is almost fifteen, and I feel like that stupid grasshopper who failed to prepare for the winter. I love being a mum, and I’ve had a tough time over the last few years adapting to the role of not being needed and being very needed at the same time. In four years, please god, Alison will be in college and with that, the day-to-day organising and keeping track of school meetings, basketball training, drama rehearsals and the likes will be gone. What will be my purpose then?
The last three years particularly feels like a waste. I know I couldn’t help the chronic pain, but the accompanying tiredness was so debilitating that even a once-weekly blog felt like a mountain to climb. Research suggests that pain can rewire the brain, and I think I was stuck in fight-or-flight mode for a long time. Now that the pain is gone, I’m now grappling with tiredness, possibly from the extra physio, but also the years of sleep deprivation and pushing through it all.
I also feel annoyed when I think of all the money I’ve spent on doing various courses in the hope that a combination of them would lead to meaningful employment. Unfortunately, many content creation and editing jobs are now being replaced with AI. I honestly don’t know how this can be justifiable, especially since most people I know would agree that it’s obvious when AI Has Been Used To Write An Article (grrr). There’s also been a shift in the last twenty years in how we consume material. Even I, a self-professed lover of feature journalism, don’t buy newspapers anymore, opting instead for news websites like rte.ie and thejournal.ie (being unemployed led me to cancel my Irish Independent Subscription).
And speaking of phone calls, for those of you who haven’t met me in person, let’s just say I don’t quite have a telephone voice suitable for working in a call centre, unless it’s a Guinness or Smirnoff call centre and they’re expecting to hear a drunk at the other end of the phone. Nor am I built for waiting tables (unless it’s a restaurant where customers love to have their drinks and food rained all over them) nor, thanks to this hip replacement and the good old CP, am I suited to stacking shelves. Thankfully, I’ve never had any interest into going into the medical field. Can you just imagine these shaky hands trying to draw blood or insert a catheter? I wouldn’t let myself anywhere near me with a needle, and nor should anyone else.
I think back to when I first graduated from Trinity in 2007, clutching that precious English Studies degree etched in Latin (only for the parchment, I could’ve printed it off one of those dodgy templates on Microsoft Publisher. You know the ones, with the dodgy Latin text to show where your own text should go?). I was young, naïve and full of hope. I thought that I could juggle a number of jobs: Freelance Journalist, giving English grinds to Leaving Cert students, teaching creative writing and eventually churning out two novels a year a la Enid Blyton. It’d take a while, sure, but I believed that I would eventually secure that six-figure book deal that all writers fantasise about. Perhaps I still could: who knows?
But money, although useful to survive, isn’t my only motivator. It’s also about the embarrassment and shame I feel for being out of work for so long. Yes, I raised a child, but plenty work and raise children. When I’m asked, “what do you do?”, the answer is always different. Unemployed, self-employed, and occasionally, stay-at-home parent, which is the hardest job in the world, and that’s before you remember that there’s no sick pay or annual leave. I had a rough few years, and I’m considering looking into counselling to help me process that, but now that I can look forward, the expanse looming ahead of me is frightening. I feel an irrepressible need to fill it with something purposeful.
Now, I know that a certain Cork-based sister is going to smite her forehead and contact me saying “This is not what we agreed. We agreed that you were going to focus on your physical and psychological recovery.” My mother’s body might be dead but somehow it feels that she lives on! And I am of course taking my recovery seriously, but the hip replacement has given me a new lease of life and I’m craving the satisfaction that can only come with being productive and having achieved something (Here it’s worth noting that, like Del Boy, I’ve always plugged away but haven’t actually achieved that much, i.e., completing my bloody novel).
In a bid to throw myself back into the labour market, I’ve joined Employability, an organisation dedicated to helping disabled people find work. My mentor is a fellow CPer, which helps when explaining my capabilities and limitations. There will be challenges, however, to finding work. The cost of living crisis means that many businesses are reducing their workforce, for example, shops introducing self-scan options, reducing the need for staff. Employers are looking for value for money, and may not be willing to gamble on hiring a disabled person who, while well capable of work, may need accommodations in order to reach their true potential. This is nothing new. According to the National Disability Authority, 32.6% of disabled people are in employment, compared with 70.8% of the non-disabled population. This is well below the EU average of 51.3%; in fact, we have the lowest percentage of disabled people in employment in Europe (Source nda.ie).
All of this isn’t exactly inspiring, but like many others, I shall persevere! After all, the best thing about being disabled, and specifically, being part of the Independent Living Movement, is knowing I am not alone, and that we are collectively advocating for change. In the meantime, I’ll continue applying for the jobs that crop up in my inbox, until such time I write that award-winning novel!
Tuesday Thoughts: Martin Naughton, Ten Years On
It’s been ten years to the day since the disability movement was shaken by the passing of our beloved Martin Naughton. You only had to meet Martin once to know that you were talking to someone special. He lived in-between spaces; as a child, he moved from his home in the Gaeltacht in Spiddal to St Mary’s in Baldoyle without a word of English (legend has it that his friend John Doyle taught him English); he worked in St. Mary’s teaching swimming classes when many of his fellow residents were passive recipients of care; and he fought for the right to true independent living at a time when, in Martin’s own words, disabled people “were to be cared for rather than cared about.”
In the later years of his life, Martin approached Joanna Marsden, former editor of the Irish Wheelchair Association’s feature magazine, SpokeOut, as well as being a journalist and author extraordinaire, with the proposition of helping him to pen his memoir. Sadly, when Martin passed away on 13 October, 2016, Joanna had not yet finished penning the memoir, and was hesitant to complete the project without him. Thankfully, Joanna came to the same realisation as many of us who have worked with Martin in the past, myself included: Martin wasn’t one to hold someone’s hand. He had great vision, but often needed help in executing his grand ideas, and so he had a rare ability to encourage people to trust in their own capabilities and to have the courage to make mistakes. Thus, Joanna completed and published Martin’s fascinating memoir, Never Know Your Place, and in doing so, played a pivotal role in keeping Martin’s spirit alive.
Everyone who has ever met Martin seems to remember their first meeting. Many people were introduced to him in Chief O’Neill’s, a hotel that was once located in the heart of Smithfield. When I met him, I was only twenty-one years old, and I was eager to be spoonfed, but it soon became clear that Martin wasn’t going to do that. He wanted me to establish a Leader Forum in Dublin. The disabled people I met during this time, including Hubert McCormack and Peter Moore, helped me more than I ever could have helped them. Thus, I was able to apply what I learned during the summer of 2005 to my everyday life long after the summer job had ended.
Martin became the recognisable mouthpiece of the Independent Living Movement, often filmed or photographed in a red jumper and matching taqiyah-style hat.
With his soft-featured face and largely paralysed body, he could elicit pity from the coldest of politicians, but once he started speaking, he made it clear that he was not an object of pity, and that he meant business. After all, government cutbacks were a constant threat to his independence and in turn, his freedom and his livelihood. Accidently or otherwise, guarding these for himself – and his peers across the country – became Martin’s top priority. Some would say that Martin was only too happy to be the face of the Independent Living Movement, and if that’s the case, then we as a movement were happy to have him stand at the coalface. We praised him, doubted him, admired him but I, at least, never envied him. Campaigning for the right to true independent living wasn’t just something Martin did, it became something Martin was: a symbol of disabled people’s ambition, of our quest to live the lives that we deserved.
Seeing the recent campaigns led by disabled activists around introducing a once-off cost of living payment for disabled people made me swell with pride, as Martin and others taught us younger activists to never take no for an answer. Martin and his peers were notorious to resorting to outlandish measures to get his point across. One of my favourite photos of Martin (which I can’t find on the web right now) shows him and Michael McCabe, dressed in stripy black and white prison uniforms, surrounded by a cage. The purpose of this demonstration by the pair was to illustrate how disabled people were becoming imprisoned by cutbacks.
Martin Naughton touched the lives of both disabled people and our non-disabled allies. Then president of Ireland, Michael D. Higgins, paid tribute to Martin on his passing. Christian O’Reilly, a now prominent playwright and screenwriter, landed one of his first jobs working with Martin in the mid-nineties, and immortalised him in the film Inside I’m Dancing/Rory O’Shea was Here, and later in the stage play No Magic Pill. Christian later explained that he wrote the latter because he wasn’t satisfied with his attempt to capture the tenacity, the cheekiness and the complexity that embodied the man with the hat.
This challenge is not Christian’s alone. Younger activists coming behind us will never have the privilege of meeting him in person, and that’s why, ten years after his passing, I think that it’s crucial that we remember him, talk about him, and strive to honour his amazing legacy. To do this, we must believe within ourselves that we are worthy of equality. We must insist on sitting at every table where discussions about our lives are taking place. We must resist the urge to shake those collection buckets and instead demand our rights, which have been denied for all too long.
We owe it to Martin, and indeed to all the activists who have since passed away, hoping that their contribution to society will make it a little better. This year, the Irish disability community lost another remarkable activist – who “was born in 1954, the same year as Martin” – our comrade Dermot Hayes. Dermot and Martin were great friends, and although Dermot was very much an activist in his own right, establishing many community initiatives for both disabled and non-disabled people alike, he still looked up to Martin and credited him for the support Martin gave him.
And to those of us who knew them, they will never be forgotten.
Thursday Thoughts: Push Yourself
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.
Tuesday Thoughts: Hip-Op
(I chose this title because my sister wanted to create a WhatsApp group after my hip replacement called “Hip-Op,” to keep everyone close to us informed of my progress. “Get it? it’s like hip-hop only it’s “hip-op” instead.” I gave her a withering stare. The group was never created.)
Forgive me, readers, for I have sinned: it’s been six months since my last blog post. And what an exhausting six months it’s been.
My birthday, my forty-second birthday was a bit different this year. Traditionally, my friends and I go out for dinner, but instead I decided a bit of surgery was in order. Come on now, lots of women in their forties opt for surgery – a tuck here, a lift there! But no such luck for me. As I mentioned in my last blog, my life had become miniscule. By February, I could no longer bear weight through my right leg. I was prescribed bupromorphine patches, and was considering using them when I read that I’d have to wean off them before hip replacement surgery. It was becoming clear that surgery was going to be my only choice.
In March, I found out that my urgent surgery was scheduled for Friday, 24 April. I was terrified, but what terrified me more was the prospect of continuing as I was indefinitely. Two hours’ sleep per night, tilted in my wheelchair. Losing the ability to stand for any length of time. Constant pain, even when taking the maximum dosage of painkillers. Deep depression, caused by a sense of uselessness and failure. By this stage, I had been in chronic pain for nearly six years, not taking it seriously enough because I’d been told that it was a side effect of my depression, or aging with Cerebral Palsy. Trying to push through it all in the belief that it was my own fault.
When D-Day came, I wasn’t scared. I’d spent so much time, night after sleepless night googling the surgery, looking up the restrictions, aftercare instructions, exercises and possible complications that I couldn’t have been more prepared. We checked in and I rushed to the toilet, determined not to piss myself in the middle of surgery. Of course, I’d forgotten that I’d need to give a urine sample before surgery. Lads, I was drier than the Sahara. I’d only drank small amounts the night before as per pre-surgical instructions, and I had nothing to give. Legally, the hospital had to make sure I wasn’t pregnant before they could proceed.
“Oh, is that the reason?” I clasped my hands together. “I’m definitely not. My hip is so fecked that hanky panky is the last thing on my mind.” The staff thought it was hilarious, but no dice. I missed my original surgery slot. While I was waiting, I was instructed to lie flat on a bed. The pain in my hip was so severe that I couldn’t lie straight. They had to give me pain meds which did nothing; you could hear my screams across the town. The nurses were shocked by how bad the pain was. They’d ordered an ultrasound, but thankfully I was finally able to produce some precious pee before it came to that, and ascertain that there were no little Fitzgeralds waiting to be discovered.
Many disabled people might tell you that their childhoods have been largely dominated by surgeries, but this wasn’t my experience. Apart from my c-section in 2012, I’d never gone under the knife, and I was s-h-one-t’ing myself. I was brought down to surgery and put into a little room with five or six doctors. They sat me up and bent me forward so that my boobs were pressed against my knees. The pain- which was the hip pain – was unbearable. Then they successfully administered the epidural, and all sensation in my legs floated away. For the first time in six years, I couldn’t feel any pain whatsoever, and I remember not caring in that moment about anything, even the possibility of dying on the table. Before entering the operating theatre, I closed my eyes and asked my mum (now deceased seventeen years) to look after Alison if the unthinkable should happen to me. The staff probably thought I was mad.
I was given a needle through my arm. Next thing I remember is waking up in recovery. I’d gone in at half one; it was now a quarter to four. As I opened my eyes, the nurses were chatting about their weekend plans and smiled as they clocked me earwigging. Then it was up to the ward. I don’t remember much about that evening. My phone was buzzing with endless notifications but I barely had the energy to hold it.
The next morning, the surgeon came by and told me that the operation was a success. He also told me that my old hip had shattered in his hands as he was taking it out of me. In other words, I really could not have gone on much longer.
I can’t say that I was instantly pain-free, but it was a different kind of pain, manageable with drugs and ice. The staff ensured that I was drugged up, and I was introduced to Oxy, which I stayed on for three weeks. I was spoiled in the hospital with a steady flow of daily visitors, to whom I will always be eternally grateful. John Paul was amazing. He kept things ticking over at home and took over with Alison, ensuring that her routine was as normal as possible, and was with me in the hospital every hour that he wasn’t occupied. He also took great care of me when I came home, ensuring I didn’t have to worry about anything. He still won’t let me do certain chores, much to my frustration, but I suppose after six years of being in pain, some things aren’t worth the risk of dislocation at the moment.
My sisters also both deserve a shout out for their efforts during this time. Laura came up from Cork and stocked my freezer with food and medicine cabinet with vitamins. Alex became a live-in nursemaid when I came home from hospital, helping me shower, toilet and even stayed overnight several times a week. Were it not for these kindnesses, I might have had to consider alternative recuperation arrangements, and everyone who knows me knows of my deep and somewhat irrational fear of being institutionalised. I’m also blessed with good friends who brought me out of the house and helped me to embrace the world again after hiding from it for so long.
Before I had the hip replacement, I was told by so many people that I wouldn’t know myself, that it would be worth it, and that I would get my life back. For the first month after the surgery, I was stiff and sore and thought I’d made a mistake, but almost five months since the operation, I can confirm that if you are in as much pain as I was, a replacement is certainly worth it – PROVIDED (sorry for shouting, screen-reader-users) you do your walking and your physio. In my experience, the physio and walking has to be done, otherwise you can seize up quite quickly. I always said I’d be happy not to return to full-time walking as long as the replacement took the pain away. And for safety reasons, a return to walking full time would be ill-advised for me. I used to fall all the time and think nothing of it, but now a single fall could dislocate the prosthesis, so there’s more at stake.
It’s hard work, but slowly, I feel I’m getting my life back. The biggest obstacle I have right now is tiredness, but I think a lot of that is down to me weaving more activity into my life. I’m back batch cooking, something I haven’t had the energy for in years. I’m back trying to do at least two hours’ writing a day, and I try to do three twenty minute walks from one end of my house to the other (I’m not confident about walking outside the house yet, but I know it will come). Considering that I’d reached a point where I couldn’t even bear weight through my right leg at all prior to the operation, I must admit I’m pleased with my progress.
The cause of my hip woes was discovered to be a condition called hip dysplasia. I’m not sure how long I’ve had it, but in my case the dysplasia involved the femur (thigh bone) being pushed right up into the hip socket, and the head of the femur grinding against the hip socket. Who knew that a case of sciatica could turn out to be something completely different? Hip dysplasia is typically diagnosed in infants, but adults can also be diagnosed later in life, having not developed pain or other symptoms until their thirties and forties, which is what happened in my case. That said, given our gait and muscle tone, it’s not unusual for us wobbly CPers to have hip dysplasia. I admit I do look back sometimes and wonder if I overlooked some obvious symptoms. I’d always get a stitch in my right side after walking. If I fell, it would always be the right leg that buckled first. And it would explain why, despite all the physio I’ve done over the last few years, I never felt that the right leg was getting stronger. That’s the biggest change I’ve noticed in these last twenty-two weeks: my leg finally feels the benefit of the physio.
Operation “Sort My Life Out” is now in full swing, as much as my energy will allow. I’m back writing godawful blogs. I’m actively looking for work – I’m registering with Employability, who help disabled people find work, as well as doing a jobseeking course online. Every day I make a small step towards progress. And I really hope this doesn’t sound arrogant, but I’m proud of myself. Proud that I found what was causing the pain all these years. Proud that I was brave enough to risk a complex operation. And I would urge anyone reading this who is experiencing chronic pain not to give looking for answers. I shudder to think what my future would look like now if I had.
An Overdue “Hip-date”
Just writing this update quickly in case you’re wondering where I’ve been!
Firstly, it has to be said that the corticosteroid injection in October proved to be life changing, and for a while, I got myself back. It felt amazing. I possibly overdid things in hindsight, but I was just so excited I couldn’t help it. All meals made from scratch. Forty-five minutes on exercise bike, coupled with another half hour of physio. Writing 1,500 words a day. Dogs walked every day. I slept every night for 6-8 hours. It was the happiest I’d been in nearly six years.
Then – wallop. On the first week of December, I felt tired, worn out, hopeless, useless. I prayed that it was just a bad day. It wasn’t. The pain was back, and I cried because I knew that soon I would lose everything I’d enjoyed in those six weeks. How was I going to tell my husband that old misery guts was back? Devastated isn’t a strong enough word. I was hoping to enjoy Christmas pain – free, but apparently that was too much to ask for.
Since then, I’ve kept up as much physio as I can manage, but it’s made no difference to the pain. i do it more to retain as much mobility as I can, but frankly, my mobility is now completely fucked. By the end of January, I couldn’t bear weight on my right leg at all, which has turned showering and toileting into dangerous sports. I can’t shower now unless there’s someone in the house. Where I could hobble the four metres from bed to shower using a rollator, I now have to drive the wheelchair right into the shower, transfer onto the shower seat (practicing doing so without twisting my hip, which is a challenge), and reverse the chair far enough to protect it from water but near enough that I can transfer back to the wheelchair when I’m finished. Showering is something I used to do without a second thought, now it’s a military operation that takes an hour in total.
I’ve started using a sock aid and a grabber, both of which I’ll need after the operation anyway. Sleeping has become a notion in the distant past. I use all the cushions, pillows and sleeping devices from Amazon, position them as best I can, heat up the auld hip before bedtime and take the prescribed painkillers I’ve resisted until now in the hope of conking out for a few hours. Unfortunately, this rarely works, and for the last month I’ve either slept in my orthopaedic chair or my wheelchair. As you can imagine, this doesn’t lend itself to restful sleep.
Two weeks ago, the pain became so severe that I went to A & E to make sure I hadn’t broken my hip. Of course I hadn’t. I have an intense phobia of hospitals that going to get checked out was not something I did lightly. The doctor who took the x-ray remarked “you do know your hip is very shallow, right?” I do indeed, but I’ve only known it for under a year.
I know I’ve become somewhat reclusive, and I’m sorry, but I’m sick of complaining and don’t like complaining to people all the time. However, I do have some good news. In January, sorting out this situation became my full time job, and I drafted a letter requesting an assessment from an Occupational Therapist for an electric wheelchair. My cousin and godchild (how old am I?!), who’s working as a doctor in Perth, put together a compelling letter outlining my reasons for needing an electric wheelchair from the HSE. I have my own, but it was originally intended for longer distances and – fun fact – it costs more to service a wheelchair than it does a car. Unless I win the Lotto, I can’t afford to fund this myself indefinitely. I was just about to send the draft to my orthopaedic surgeon to back up everything we’d written, when my phone rang. It was M, the OT I’d worked with when I was pregnant (and might I add, the most helpful of all the health professionals I’d worked with at the time). She was very apologetic, saying that I was overdue a wheelchair assessment by over four years! Stunned, I told her that I didn’t remember being put on the waiting list, and asked her who had made the recommendation?
A shuffle of papers down the phone.
“It was an urgent referral, made in 2021, by the Confidential Recipient herself.”
The Confidential Recipient at the time had been my beloved friend, Leigh Gath. I burst into tears. I really miss Leigh, and wish that I could talk to her about this, but to know that she is looking out for me means more than I can say. M came to my house that afternoon, and I explained that I could no longer walk and was awaiting a hip replacement. Suddenly, things became urgent, and a month and a half later, after using an electric wheelchair for over ten years, the HSE awarded me an electric wheelchair. Now, it’s not a top-end wheelchair, but I won’t have to pay to get it fixed anymore, relieving us from significant financial strain.
Why am I telling you all of this?
I don’t want sympathy, but I also feel like I owe people an explanation. Remember in my October blog, I mentioned that I’ll need a replacement? Well, it’s happening, and soon. I’ve received a date and everything. It will mark exactly a year since my diagnosis, and my forty-second birthday.
I wish I didn’t have to do this. The thought of it absolutely terrifies me. The closest thing to an operation I’ve ever had was my c-section when Alison was born. I’ve never been under anaesthesia. There’s a higher dislocation risk for people with CP. It mightn’t work.
But on balance, I can’t continue like this. Even with all the physio in the world, my mobility has gotten worse, and the pain is constant. All the cartilage is gone, and now I’m left with a constant bone on bone sensation. Some days, I can’t even stand up. I go to sleep at 1am and am back awake by 3am, though I can go back to sleep if I get up out of bed and tilt back in my wheelchair. Even with nighttime painkillers and a fortress of pillows, I can’t seem to get a solid night’s sleep, and haven’t done since 4th February.
I’d started pulling away from everyone again, but thankfully I have great friends who refuse to be pushed away. I haven’t added anything to my novel in months. The smallest tasks are sucking up my energy. It’s incredibly frustrating. The worst part is not the pain, but the accompanying brain fog. Thinking takes energy. I can’t retain information. I feel like I am no good to anyone right now.
And as I said, I’m frightened of this surgery. Extremely so. But what frightens me more is having this pain destroy another six years of my life. I want my life, and myself, back so badly. Here’s hoping that can happen sooner rather than later.
I want to back to work.
To go back writing.
Back to activism.
And back to me again.
Sunday Ramblings: Jumping Back In
As I start writing this blog, it is 6pm on Sunday, 2 November, and it is dark outside. I hate this time of year. I honestly think I might have a touch of that SAD [Seasonal Affective Disorder], since I’ve been sluggish all weekend. Perhaps I’m just tired. It’s been two weeks since I got the pain injection into the shambles I call my hip. And while I’m not quite back walking full time yet, there have been some marked changes in my life. This afternoon, I took a painkiller for the first time in two weeks. Not because my hip was at me, but because I had a headache above my eyes, possibly from too much screentime. This afternoon, I cooked a delicious (if I say so myself!) steak dinner, complete with roasties and veg, and cleaned up afterwards. In fact, I’ve done a lot of cooking, with or without assistance, these last two weeks.
On Thursday, I went to a local disability meeting, with a group with whom I was heavily involved in prior to Covid. Everyone was shocked to see me. I think that they thought I was dead!
I’ve also managed at least half an hour on the exercise bike every day since last Sunday. I find that it’s taking me less time to cycle the same distance. And, if you’re reading this, this is the third blog I’ve written in the space of two weeks. I could get used to this level of productivity – it feels fantastic!
I need to hold onto this buzz I’m feeling, because I’m not able to go back in time. The truth is, whether I like it or not, I’ve lost so much time because of pain and exhaustion. When I finished the Disability Studies course in 2019, my plan was to do the “Train the Trainer” course, which (I think, but am open to correction on this) would enable me to give my own courses. Not only could I deliver Creative Writing Courses, but Disability Equality Training as well. Earn money, get a paycheck!
Or I’d like to do another oral history project, something like Conversations about Activism and Change. I typed out every word of those audio recordings, before editing them down. Damien Walshe and Des Kenny taught me useful lessons as I compiled and edited that collection, lessons that I’d love to apply elsewhere. Maybe I could do a collection of voices of up-and-coming activists? Without the heavy mantel of fatigue, my brain is swirling with ideas.
There are probably a number of reasons why I am reevaluating things at this moment. One is that I turned the big four-oh last year, and my original plan was to have my novel finished by then. Ironically, the first line of this, as yet, unfinished draft is “There are milestones one is meant to have reached by the time they turn forty.” This was me setting a deadline for myself, one that I’ve now missed. I would like to complete Rachel’s story, as I think many would relate to her internal (and external) struggles. She’s a hot mess, and often I want to strangle and hug her in equal measure!
Alison will turn fourteen in February. God willing, she will be going to college, an apprenticeship or a job when she’s finished the Leaving Cert, and as a stay-at-home mum, I suddenly find myself at a loose end. Where once I filled my days playing Lego, setting up Sylvanian houses or doing elaborate art projects, I now find all the time I once spent one-to-one with her spreading out in front of me like an overflowing lake. Don’t get me wrong – I’m still needed. For example, I was awake until one this morning applying tea-stains to her costume for the upcoming Addams Family Musical, as she is playing an ancestor. Apart from these moments, she’d much rather hang out with friends than her mum, which is a normal part of her push for independence. But I don’t really know what to do with myself.
I’m still available for proofreading work, but anecdotal evidence suggests that my opportunities in this area are fast diminishing in favour of AI. This is part of the reason why I didn’t feel motivated to complete that editing course that I started two years ago. If I think too deeply about it all, I start panicking. There’s nothing quite as sobering as scrolling through jobs.ie, and seeing that I am qualified for nothing relevant, nor have I the skills for local jobs. Waitressing, working on the shop floor, even factory work all seem beyond my realm of possibility. Of course, I apply anyway, because you never know. Dear reader, I don’t know if you’ve ever been to a job club. I have, and it was one of the most humiliating experiences of my life. I did this online career quiz and the top result was “Interpreter”. When the facilitator asked why I was laughing, I said “I can’t be an interpreter. I need one!” Awkwardness rippled around the room as my fellow jobseekers couldn’t decipher whether I was serious or messing.
So that’s where I am now, wondering what I should do next. All offers and suggestions welcome. In the meantime, I’ll be attacking my novel yet again while drinking the tears I’ve sobbed because of it.
Thursday Thoughts: A Tribute to Mrs “Bouquet”
When I turned ten or eleven, my friends started to ring me on occasion at the weekend, on the landline (one of those cream-coloured Eircom phones that had ten buttons on the right-hand side, where you could pre-program your most frequently dialled numbers, then ring them at a single touch of a button. Kids these days just wouldn’t understand that level of sophistication). As my friends rang the house, they would remark afterwards that my mother was “posh”, because she would answer the phone with a jovial “1-2-3-4-5, Una speaking.” They didn’t know any other parent who answered the phone in this way.
Nor did they know anyone who, in the early ‘nineties, made double-baked stuffed potato skins. Or fancy casseroles, beef ‘n’ beer stews, or used fondues or raclettes. I’m cringing as I recall how embarrassed I was that our parents seemed to be the “posh” ones. For God’s sake, we had a patio and a conservatory. This was pre-Celtic Tiger Ireland. We were probably considered the “Bouquets” of our area.
Even the fact that we were able to watch Keeping Up Appearances on BBC1, at a time when many of our friends only had two channels, RTE1 and Network 2, was a kind of snobbery in itself. When other Irish families were watching Glenroe, we sat laughing at Hyacinth Bucket’s (“it’s Bouquet”) misguided attempts at bettering herself, social climbing on a rickety ladder. Patricia Routledge was made for this role. I loved her clumsy displays of social awkwardness, her tireless efforts to invite those she perceived to be of a “higher social standing” to one of her candlelight suppers, and her embarrassment at being related to the plain Daisy and layabout Onslow. Of course, as I grew older, I learned that the Onslows and Daisys of the world, flawed as they were, were far more relatable than the pretentious Hyacinths.
Keeping Up Appearances became one of those things I will forever associate with my childhood and, more specifically, my mother. I remember the warmth I felt inside as I watched Mum watching it, dabbing the tears of laughter away with her hand. Of course, since the early to mid-nineties were simpler times, the whole Sheridan being gay thing went completely over my head (“oh but of course, you and Tarquin must have matching silk pyjamas”), but the bragging over Violet was something I picked up on straightaway (“my sister Violet, the one with the swimming pool, sauna, room for a pony”).
I think part of the reason why Keeping Up Appearances is so popular is because everybody who watches it can relate to it. We all have a vision of what a perfect family should look like, and we tend to think that other people have their shit together when they do not. Patricia Routledge once said in an interview: “I think great comedy is based on pretension, pretending to be something that you’re not, and the exquisite danger of being found out.”
It is also a reminder that the more we try to maintain a fake outer façade, the more likely it is that façade will fall away. Sometimes, it’s easier to live in a fantasy than face reality; for example, Hyacinth’s father “Daddy”, who clearly has cognitive issues too large for any family to deal with alone, is reduced to an eccentric genius in Hyacinth’s mind, and perhaps this is a coping mechanism for her. Violet tells Hyacinth that she’s thinking of leaving her cross-dressing husband Bruce, and Hyacinth gasps in horror, exclaiming “What about the Mercedes?”
Patricia Routledge passed away on 3 October and with that, she took another small part of our childhood, and our mother with her. I know that this mightn’t make sense to you, dear reader, but it does to me; the end of an era, a bonding ritual with both of our parents that can’t ever be reclaimed. Every time I hear that jaunty theme music, I’m back lying on that mauve sitting room carpet (no dodgy hip back then), with my head in my hands, being brought into an adult world that I otherwise had no interest in, laughing at the futility of pretending to be someone you’re not.
I recently watched an interview with Routledge on YouTube, dated early ‘nineties, where she remarked that she “gets a bit frightened of [Hyacinth] herself.” Routledge disclosed that while she herself was nothing like Hyacinth, she thoroughly enjoyed playing her, and after all these years, it’s difficult to imagine anyone else in that role.
Thank you, Patricia, for the belly laughs and for reminding us all, that despite appearances, we are all flawed, and delightfully human.
Tuesday Thoughts: Hip Hip Hooray!
It was during the first Covid lockdown in 2020 when I, like everyone else in the country, decided that I would step up my fitness regime. I started using the treadmill every day, and I ordered the most beautiful looking mountain tricycle from trikes.ie. As time passed, I felt frustrated that I didn’t seem to be getting any fitter. The more I walked and cycled, the more pain I was experiencing in my right leg. Admittedly, I didn’t think much of it at the time. I just put it down to not having cycled properly in years, maybe being a bit rusty. Then in September 2020, I fell backwards while crushing some plastic bottles under my foot for the recycle bin.
For nearly five years, I thought that this was the moment that changed everything dramatically, for the worst. Now, it seems it may have happened long before this, and I didn’t realise it.
As a wobbly walker, I fall over so often that it’s rare that I remember it. My body sports cuts and bruises that I don’t recall acquiring, never mind how I got them. A few weeks after this fall, I realised that the pain wasn’t subsiding, and that it was going up and down my leg. Sometimes, my knee felt like it was giving way below me. Other times, it felt like a trapped nerve. That was the diagnosis the physiotherapist gave me in July 2021: that it was periformis syndrome. Being me, I googled it, and learned that it should ease within a few weeks, provided I adhered to a religious physio regime.
It didn’t ease. In fact, it got worse, and soon I was getting no more than two hours’ sleep a night. The doctor referred me to Tallaght, but the specialist there couldn’t identify the source of the problem. One doctor prodded me in the back, and because I jumped, agreed with the physio that it must be periformis syndrome and nothing could be done, unless…. It was at this stage that I heard the words “pain injection” for the first time. However, getting a steroid injection into your periformis is a risky procedure with no room for error. I didn’t care. This was the end of 2022. I was sent home and was told that they couldn’t find anything wrong.
In July 2021, I was offered the opportunity of a lifetime – I won a place on the Play It Forward Programme, an initiative headed by Skein Press, The Stinging Fly, the Arts Council, and, in my case, Independent Living Movement Ireland through a bequeathment from founding member of the original Center for Independent Living, Declan O’Keeffe. I’d never met Declan, but I felt that I owed him the decency of making the most of this opportunity. Meanwhile, the pain would not abate. I lay awake every night, trying to get comfortable and wondering where I’d gone wrong, both with my body and with my career. I had a fantastic mentor, the talented David Butler, but I just couldn’t manage to put in the work required to complete my novel. Ideally, the end product of the Play It Forward programme for me would have been a bestselling debut, but obviously this wasn’t the case.
Every day, I scolded myself for wasting such a wonderful opportunity. I didn’t make the most of it, and it is only now that I accept that this was because I couldn’t, not because of laziness. I considered emailing everyone involved in my bursary award and apoIogising for squandering their money, but I knew that emotion was clouding my judgement. Instead, I went to the doctor and told her that I was having non-stop pain and depressive thoughts. The doctor explained that sometimes mental illnesses can manifest in physical ways. I wanted to scream.
This was January 2024. I had been in a depression spiral since September 2023. I was exhausted and paralysed by a pervasive sense of failure. I didn’t recognise myself. I withdrew from disability activism. I got some proofreading and editing jobs during this time, but not enough to earn a living. I stopped texting and calling friends, though some particular friends refused to be pushed away. The week before my daughter’s confirmation, I went to my doctor and told her that I was having dark thoughts and that I didn’t think I could carry on. She prescribed Sertraline, which I never took.
I never took it because I knew that it was the pain that was messing with my head. It was ruining my life. All I seemed to do was complain, and I was so sick of it. As I grew more tired, I felt more useless, like I was a burden on those who loved me. I was too tired during the day to write, or to find work, or do anything other than scroll or watch nonsense on YouTube. Taskmaster became my comfort blanket. This is coming from someone who once would rather read or listen to radio or do anything other than sit and watch a TV programme.
In February 2024, still on a crusade for answers, I went to Neurology in Naas hospital, where the doctor there again gave me hope that I could get a pain injection into the periformis and made a referral to have it done. I should point out that, at this stage, I’d only had a back x-ray, which showed up no abnormalities. We were planning on going to Australia in July 2024, and I wanted desperately to be able to enjoy it pain free. Unfortunately, that wasn’t to be, as I’ve written before. On 7 June 2024, we travelled to Tallaght and I was all ready for my injection, only to be told (a) that they couldn’t find my sciatic nerve, or any sign of damage, on the scan and (b) that they thought my pain was likely the result of a “contusion”.
i.e. That they thought it was impact pain from the fall, that I’d had four years previous.
Are. You. Fucking. Kidding. Me.
I really thought I was going mad. We went to Australia, and I relied heavily on painkillers and my TENS machine to get me through the trip. I couldn’t even walk around my sister’s bungalow; I needed the manual chair. I was so tired and frustrated. When we came home, I slid back into the Netflix binges, completely exhausted. Was this my life now, at the age of forty? No job, no prospects, a life overshadowed by tiredness and pain? What was the point of getting (two) university qualifications, and all those writing courses I’d done since 2014, if I couldn’t use them to build a career?
In January 2025, I rejoined Writer’s Ink, an online writers group spearheaded by bestselling author Sam Blake (Vanessa Fox O’Loughlin) and coaching guru Maria McHale, and I revisited my novel, once again fantasising about how the world needs to hear Rachel’s story. At first, things went well. I did a prompt exercise every day and before long I was discussing my would-be novel with literary agent, Simon Trewin, who seemed impressed. However, by April, I was exhausted again, struggling to get to the end of the day. Another frustrated visit to the doctor, another set of blood tests that showed everything was normal.
“Come back in,” the doctor said. “We need to get to the bottom of this.”
She was taking me seriously, possibly sick of my constant complaining. She brought up my files, and we went through the absolute shitshow that has been the last five years, going through the letters from the consultants, the lack of findings. Suddenly, she frowned at the screen.
“You’ve had a back x-ray. Have they ever x-rayed your hip?”
My hip? No.
“Okay, let’s do that next.”
I duly attended the “urgent” x-ray appointment, feeling I was wasting my time. A couple of days later, my doctor’s number flashed across the screen.
“It’s your hip.” She was excited. “Significant arthritis. It’s very shallow, by all accounts. I’d say you’re looking at a replacement.”
This was the 22nd April of this year. Nearly five years of looking for answers. And although it didn’t feel like it at the time, it was possibly the best birthday present I’d ever been given. I wasn’t going mad. I wasn’t a hypochondriac. I was suffering – and I use this word deliberately – from arthritis. Five years on, I finally had an answer.
Since that phone call, my life has changed so much. I now go easier on myself, knowing that I will have good days and bad. Not only am I paying more attention to my body, I know what exercises I have to do, how to look after myself properly. In June, once the reality of what lies ahead sunk in, I went back to the doctor to discuss my long-term options.
I need to be a good mum and wife. I need to get back to work. What way should we approach this?
She arranged an urgent appointment with an orthopaedic surgeon. When the appointment came in, my husband and I were stunned.
“Surgery,” he said. “That’s where we are now, and what you’ve fought for.”
I dismissed his words with a wave of my hand. “It won’t come to that.”
My dear reader, as it turns out, it may well come to that. On 4th September 2025, I foolishly attended the appointment alone, reasoning that I would be perceived more capable and confident if I asked the questions. And I was right, but the news landed like a lead brick. After half an hour’s discussion with the surgeon, during which he went through my symptoms and x-ray in detail, he handed me a leaflet – What You Should Know About Hip Replacements.
He said that although wear and tear might be a factor, my hip has possibly always been shallow and that many people (not just wobblies) have it and only discover that they have it when it plays up in their forties. He said that he has replaced the hips of at least four CPers. Best of all, he said that he would attempt a pain injection into my hip. Not just to give me relief, but also as confirmation that the hip was the cause of my pain, before cutting me open.
“Oh God,” I said. “Don’t dangle the dream. I’ve been here before.” I explained my journey so far, but he was confident he’d be able to do it.
He was right.
On Friday 17th October, with the help of an amazing medical team, I finally received a pain injection into my hip. It was relatively straightforward: I lay still enough, and the procedure took ten minutes. I burst into tears, because I felt so proud of myself for not giving up and persisting in finding the answers. I won’t know for sure until the end of the week if it has worked, but I do feel some relief already. I’ve had four good nights’ sleep – apparently, I didn’t hear Rupert barking the other night, which feels wrong – I always am the one to hear him and let him out. Last night, I was doing a crossword puzzle in bed, and I sat with my knees up and the book resting on them. John Paul remarked that I haven’t sat like that in years. Today is Tuesday, and I feel exhausted, five years of sleepless nights catching up on me. But I’m not in pain. It feels like being on holiday from my own body.
I know I shouldn’t get too excited. After all, it’s still early days and this injection mightn’t work long-term. And if I do need a replacement, recovery will be long and arduous. But for the first time in a long time, I feel hopeful that I can get back to myself and to who I was before all of this started.
I suppose I’m sharing this for two reasons. First, to apologise to the many people I’ve lost track of in the last five years, and to offer an explanation – not an excuse. Second, to give anyone who finds themselves in the same position some hope. I believe you. Please don’t stop looking for answers. I offer you love and light xx
Tuesday Thoughts – Budget 2025: A Reflection
October is a reflective time for me. It’s bookended by my father-in-law’s anniversary on the first day of the month, and my granny Maye’s anniversary on Halloween night. Sandwiched in between is Martin Naughton’s anniversary. Regular readers of this blog should be familiar with Martin by now; he is considered the Father of the Independent Living Movement in Ireland. Next Monday, 13 October will mark his ninth year “away from home”, and he is still sorely missed, both in the capacity of being the forefront figure of the movement, and as a comrade and friend.
Martin came to mind this morning as I read the paper this morning on Budget Day. I have vague memories from my youthful twenties of Budget Day being an event that people got excited about. Now, it’s a day filled with dread, the ghosts of the 2008 recession continuing to haunt us. In 2012, then Health Minister James Reilly announced a sweeping cut in funds of €10m to the Personal Assistant Service. It was salvaged by the actions of a group called the Leaders Alliance, headed by Eugene Callan and included many disabled activists, too many of whom have also since passed away, who slept outside the Dail for three nights in protest. Leigh Gath told the media: “We’re often seen as the most vulnerable targets, but after today and however much longer we have to stay here, maybe that will change.”
Irish disability history was made that on 5 September 2012, when the government announced that they were rowing back on the inhumane and savage cuts, but the threat still lingers over disability services, Personal Assistance in particular.
Back in 2025, I read in the Irish Independent this morning that “disability services will be a central part of the budget.” It goes on to state that “this will be used for more staff, more residential places, more adult day places and make some contribution towards assessment of needs.” This is great news for many families who are under strain, but I’m sceptical as to whether there’s any great demand for adult day places or residential places among disabled people themselves.
I accept that there are some disabled people who enjoy the camaraderie of attending day services, who love meeting their peers and who love going on day trips to places away from their families. I appreciate that for many accessing respite services that it allows them a level of freedom that they may not enjoy at home. However, it is crucial that disabled people themselves are holding the reigns of control over their own lives, that they themselves are demanding and designing the services that will enable them to get the most from their lives.
In my experience, and from talking to other people, the Personal Assistant Service is the one service that offers personal freedom and choice. It allows people to study, work, and to participate in society as contributors and consumers. In its purest form, it lends people more choice and control over their own lives – to do whatever the hell they want, whenever they want. Honestly, it’s been over ten years since I felt this way about my Personal Assistant Service, and I know I’m not alone in this.
Since the cutbacks were supposedly reversed in 2012 – nearly thirteen years ago – advocates for independent living and disability (human) rights have had the frustrating job of having to educate the government, service providers and disabled persons themselves about the philosophy of independent living and the importance of adopting a human rights approach. That means enjoying a standard of life that our non-disabled peers might take for granted: living in our own homes, perhaps with a partner or a family; engaging in meaningful employment or educational opportunities; availing of social outlets or even going travelling. It seems that every time disabled people win the right to do these things, another cutback or legislative loophole pulls the rug from under our feet.
Luckily, however, we are, in theory, in a better position to push for an acceptable standard of living than we were in September 2012. The UN Convention on the Rights of People with Disabilities (UNCRPD) was ratified in 2018, and the monitoring/advisory body was established by the Irish Human Rights and Equality Commission (IHREC) by the end of that year. Around the same time, Independent Living Movement Ireland (ILMI) launched its #PASNow campaign, urging county councils to vote in favour of legislating the Personal Assistant Service, thus enshrining the right to Independent Living in Irish Law. Most recently, the publication of the National Human Rights Strategy for Disabled People 2025-2030 marks a vital shift in the State’s obligation to treat the barriers to inclusion that disabled people face as serious violations of their human rights.
Legislating for Personal Assistance Services in Ireland is a matter of urgency. Currently, PA hours are distributed, primarily by the HSE, in accordance with perceived need. It is not enough for anyone to be assisted out of bed, often at a time that does not suit the individual, and to be put back into bed at the end of a day. Humans need to feel a sense of purpose, a desire to fulfil their potential, and disabled people are no different. When a disabled person is denied access to the services they want as well as need (because, to paraphrase the great Martin Naughton, we should be able to do what we want as well as what we need),that person is at risk of isolation, of developing mental health problems, of never truly being recognised as an equal in Irish society.
Des Kenny said in Conversations about Activism and Change that while changes for the better are happening, overall, our progression towards equality is painfully slow. I know we have to look at the bigger picture, but I cannot help but feel frustrated that many who have fought battles in the name of achieving equity for disabled people have since passed, far too soon. The National Human Rights Strategy was a monumental achievement for disabled people. Now, our government much work to ensure that the strategy is implemented in our everyday lives. We are worth the investment, in every sense of the word.
As I said, October is a reflective time for me. I’ve now been blogging about disability rights for over eleven years. Am I still going to be writing the same things in another ten years’ time? God, I really hope not.
Tuesday Thoughts: A Reflection of “In Their Names In Our Time” Eight Years On
The date 23rd September 2017 will always be etched in my memory as the day that disabled people in Ireland came together to push back against the injustice that we’d collectively endured as a collective since the onset of the recession. On that chilly September day, over two hundred people came together in the Mansion House, a year after the centenary marking the Easter Rising in 1916, to celebrate the lives of seven late disability activists who had made notable contributions to the advancement of Independent Living and equal rights for disabled people in Ireland. Their names were Martin Naughton, Joe T. Mooney, Ursula Hegarty, Florence Dougall, Michael Corbett, Dermot Walsh and Donal Toolan. Although these people were singled out, there were many activists from across the country whose contributions were recognised in conversations held between attendees on the day; far too many to list here.
When Martin died on 13th October 2016, a collective of disabled people came together to create a space to celebrate his work and legacy. What became obvious in the planning process of the event was that we needed to reinvigorate people and the Independent Living Movement as a whole. In the barren landscape of post-recession Ireland, where vital services had been attacked and whittled down to almost nothing by the very people who promised to protect them, disabled people were hungry for change, and were adamant that they had a duty to honour these seven activists’ legacy by fighting for it.
On 23rd October 2016, as I sat in Carmichael House, where the first Center for Independent Living had been established twenty-four years beforehand, I pondered on how I could contribute to the continuation of this important disability movement. It had been a year since I’d last been employed by Offaly Centre for Independent Living, and I’d departed from the job with a sparse skill set; apart from a successful Fashion show which sported the diversity within our local community, I’d only ever organised a smattering of coffee mornings and movie afternoons. I wanted to be a writer, and so I volunteered to establish a blog to collect memories and stories about the early days of the movement. Doing so gave me the confidence to help with the admin of the event. For the first time in a long time, I felt valued and useful, and it was an amazing feeling.
I was invested in this project. My peers were trusting me and were generous with their advice. I started talking to and texting people I’d never spoken to before, especially John Doyle and Shelly Gaynor. John fed me titbits of Independent Living history, things I didn’t know before, because there was no record of an Irish disability movement. Shelly was a grounding force. She was the voice of reason and could easily distinguish between the achievable and the impossible. And Eileen Daly became a firm friend, trying to arrange meetings to accommodate my participation. Ultimately, however, I ended up recruiting a babysitter for Alison as the organisation of the event became like a full-time job.
There was a lot of talk around the event, positive and negative. Mistakes were made, many of which I’d take back in a heartbeat, and certainly would not repeat. Organising an event of this magnitude was a giant learning curve. That’s the essence of Independent Living, and learned from each other. Alliances and lasting friendships were formed. Ultimately, disabled activists from across the country rowed in behind us, knowing that although the process wasn’t perfect, we were trying our best. We were reluctant to make promises about how the event would go. I felt we were under an enormous amount of pressure. Everyone was looking for the same thing: a feeling of solidarity and camaraderie; yet each of us were also bring personal hopes and expectations to the table.
Finally, the day itself came. I remember waking up with a pain in my stomach. I remember doing my best to greet everyone I knew and introduce myself to anyone I didn’t. As a writer, I’m used to working alone, but meeting two hundred people in one day was another level of overwhelm. In an act of bravery or stupidity, I’d offered to write and perform a monologue highlighting the dangers of internalised oppression; we cannot allow our own self-limiting beliefs to hold us back. I’d never performed on stage before, and the subject of the monologue I’d written with Peter Kearns – a disabled mother led to believe that she was incapable of caring for her own baby – was still painful and raw, five years later. Thankfully, my acting debut was well-received, though minutes later, Peter Kearns found me puking in the toilets. (“Does it get easier?” I asked him. “God, no,” he laughed as he beheld my ashen face.)
The event was picked up by RTE News, which was great publicity, but the purpose of the event was more nuanced than was reported. We came together as a collective to mourn and remember, but also to regroup. We needed that event to remind ourselves of our own strengths. That we did not deserve the inhumane treatment that was doled out to us in the name of saving government money. A reminder that no matter how much is in the government pot, we are entitled to our rights and services that enable us to be independent must be secured and underpinned by a rights-based approach.
Eight years have passed now, and changes have been made. Independent Living Movement Ireland (ILMI) is now officially recognised as a Disabled Persons’ Organisation (a DPO), representing the views of disabled people across the country. ILMI are supporting the establishment of local DPOs, encouraging people to fight for their rights and vocalise their concerns.
In addition, ILMI is leading the way in pushing back against language that victimises or infantilises disabled people. And just last week saw the publication of the National Human Rights Strategy for Disabled People 2025-2030, a historic moment as this has been the first strategy to consult with disabled people and DPOs throughout its compilation. This gives me hope that perhaps, one day, disabled people might gather in the Mansion House to celebrate rights, freedom of choice, and being truly treated as independent citizens of Ireland, just as those gone before us fought for.
I will forever be proud of taking part in this event, and will always use it as a benchmark for what is possible, because really, anything is, when we work together.
