Category Archives: Disability

Tuesday Thoughts: Hip Hip Hooray!

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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

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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

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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.

Eight Things I’ve Learned About Chronic Pain

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Religious followers of this blog will know that I’ve experienced chronic pain in my sciatic area for the last five years. I noticed it after a particularly nasty fall in the back garden in 2020 but only became concerned when, six months after the fall, the pain hadn’t subsided. Since then, it’s been a rollercoaster of medical appointments, of being told it was sciatica, muscle spasms, periformis syndrome and many other things. And, of course, one medic had the gall to suggest I was imagining it, that it couldn’t possibly be as bad as I was saying (apparently, I like lying in bed every night, doing stretches at half three in the morning for the craic.)

My birthday was in April, and to celebrate I was gifted an unexpected diagnosis. After years of plaguing her, my doctor, who believed me from day one, ordered a hip x-ray. Now, I wasn’t expecting anything to come of it, but three days later, she phoned me to say that there was significant wear and tear in my right hip, and that the results could pinpoint exactly what’s causing the pain. At first, I was stunned, and a little annoyed with myself. Had I done this to myself? Since then, I’ve spoken to so many people who have arthritis too, and the majority of them struggle to articulate just how debilitating this pain can be.

Having Cerebral Palsy is not a big deal, because I’ve never not had it. However, as I get older, I find that I have aches and niggles I’ve never had before. Adapting to having CP comes naturally, as there’s never been a time when I didn’t have it, but chronic pain, although it’s kind of connected to the CP, has been a bit more of a learning curve. Here’s what I’ve learned about having this new CP (although a Google search told me some of the same things, I’m more into learning the hard way).

  1. Chronic Pain is not your fault:

    Admittedly, I naturally walk with my leg turned in, but despite appearances, I do try to walk as straight as I can. It took me a long time to acknowledge and recognise that chronic pain is not a punishment, and that being hard on myself was not going to change it. Sometimes you can do everything right and still end up in pain. This leads me to my second point…

  2. Physical pain can lead to crappy mental health:

    Being in pain is exhausting. I’ve finally succumbed to taking pain medication at night so that I can sleep, but on days where I’m in pain and tired from a poor night’s sleep, the world becomes a dark place. Even the simplest tasks become laborious and time-consuming. Your brain lies to you, telling you that you are useless, a burden. This can lead to feelings of failure and inadequacy. Therefore –

  3. Pain management must come first in your priorities:

    It doesn’t matter how busy you think you are. If you skip the physio, neglect to slap on the TENS machine or push through without the medication, chances are you won’t be able to do what you need to do anyway. In order to be your best self, you need to take control over your pain management. Eat well, drink your water, and rest when you need to.

  4. Pacing is not a dirty word:

    I continually fight this one. After all, we live in a society where “being busy” is seen as a badge of honour. I tend to get overexcited when I have a pain-free day, and I run around the house like a lunatic, scrubbing bathrooms and hoovering only to be left in agony for days after. I think what you’re supposed to do is prioritise tasks and do them at your own pace, with plenty of rest in between. I’ll keep working on it!

  5. Pain can be lonely:

    Most of us don’t want to be seen to constantly complain. As a result, I often find myself withdrawing from activities and meetings that I once enjoyed. I don’t like telling the same story, over and over. Sometimes, I don’t have the energy to be social, and I end up watching Netflix in binges when I could be meeting people out of the house, and this only heightens my inner shame and sense of failure. However, it’s also important to remember –

  6. You are not alone:

    When I eventually found the courage to talk about the impact that being in pain was having on my physical and mental health, I was surprised to hear that so many of my friends were also wrestling with pain, and as long as I don’t fall into a pit of self-pity, I can support and be supported by those who love me most. Many people experience chronic pain, with diagnoses like fibromyalgia. Sometimes people are not believed, but this experience does not make your pain any less real. Thousands of people are in the same boat – take some comfort in this.

  7. A bad day does not mean a bad life:

    I’m having a bad day today; I cannot shake the tiredness and this is slowing me down. It’s frustrating, especially since, in my mind at least, I have nothing to be tired about; no job to go to (hoping that will change soon), no toddlers, and not nearly as much writing being done as I’d like. However, I must admit that I have good days too, especially those spent with family and friends, and that overall, I’ve achieved a lot. Parenting a teenager is not for the faint hearted!

  8. Wheelchairs and walking aids have no moral value:

    Over the years, I’ve heard people saying that they want to be able to walk without aids. My thing is that I’d like to walk more with my rollator, as I did before my hip started giving me trouble. Some days I manage, and some days I can barely stand. My pain and energy levels vary. What doesn’t vary are my duties as wife, mother, and writer. I do get some invaluable help, but overall, meals still need cooked, laundry done, dogs walked. My wheelchair enables me to carry out these duties. I am not lazy; in fact, I am trying to stay as independent as possible.

    Phew! If you made it this far, thank you. I only hope that it helps someone who needs it, whether you’re experiencing chronic pain yourself, or a loved one is. Now, if you’ll excuse me, I’m going to stretch and pray for a good night’s sleep afterwards.

The H Bomb

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Trigger warning: This blog uses the word handicap which may be triggering for some readers.

Having a thirteen-year-old daughter is tricky. She’s constantly pushing for more independence, and her friends are the most important things in her world right now. So, whenever she agrees to spend time with me, I grab it with both hands. Last week, I planned an impromptu trip to Dublin, just for a wander. We were at the Jump Juice counter in the Ilac Centre on Henry Street, and I’d just ordered when, in the corner of my eye, I noticed Alison storming away without me.

“Hey! Where you going?” I grabbed her arm and she swung back around to me.

“That lady called you a smelly handicap.”

“Eh? How do you know that?”

“I heard her. She said ‘oh, I wouldn’t go near that smelly handicap.’ So I thought I’d follow her and punch her lights out.”

A large part of me brimmed with pride. Alison is embarrassed by me, because I am her mum, and cool teenagers are not supposed to admit that they have parents, and certainly not “special” parents. Yet, she was willing to throw herself in front of me to protect me from attack. Little did she know she’d picked up a sword to join so many of us in an ongoing battle to be recognised as equals – God, to merely exist.

I first heard the word “handicap” before I started primary school. Mum spent hours nattering on the phone to her golfing buddies, going on about pars and handicaps. She’d naively hoped that I’d always be oblivious to the negative connotations – the shadow of “cripples” begging during the Middle Ages, “hand in cap”, their survival dependent on the generosity of others. She could have warned me that people would call me names, or that they wouldn’t accept me, but I might not have believed her. I never got any special treatment at home; my favourite expression from my childhood is “No disability will ever excuse you from emptying the dishwasher.” My parents always expected me to do my best at everything I did. But the other side of that was that they taught me that I did not deserve to be treated less favourably. It was not okay to be othered, and to tolerate it was to show people that I deserved this treatment. They encouraged me to speak up for myself.

Granted, having been born a chatterbox, I’m not sure how much encouragement I needed. In first year of secondary school, I was advised that I would not be allowed to partake in PE, or the practical elements of Home Economics. After attempting the basketball drills, I conceded with the PE teachers, Ms Ganly and Ms Healy, that I was probably better off sitting the classes out, but I really wanted to do Home Economics. What I saw was the probability of having to do meal prep in the future; there was little doubt in my mind that I would someday live independently. What my teachers saw, I imagine, was a wobbly girl with shaky hands dancing around boiling pots and sharp knives. In fifth year, I told the teacher, with all the confidence I could muster, that I would be doing Home Economics and partaking in the cooking elements. By this stage, I was already cooking lasagne and pasta dishes at home every week anyway. Impressed (or frightened) by my insistence, she agreed. Soon this smelly handicap was bringing home dinner from school for the family every Thursday evening. The Chinese stir fry was a particular favourite, and now it’s one of Alison’s favourite dinners, too!

But hearing the words “smelly handicap,” thirty-six years after hearing it for the first time, made me feel sad. Like many of my disabled family, I have always fought to dismantle the man-made, societal barriers that block me from accessing my true potential. Yet hearing the word “handicap” the other day brought to mind early Junior Infant days when I, having just learned how to walk, used to meander towards the toilets, and the kids in the older classes would dig each other in the ribs and walk beside me, as if they were trying to trip themselves up. Now, I had no concept of walking any differently, so thankfully the other kids were around to tell me. My friend Peter pointed out to me that, like me, he did not know he had Cerebral Palsy until it was pointed out to him. In fact, he told me, Cerebral Palsy (CP) was initially named “Little’s Disease,” so-called after the doctor who “discovered” it for the first time.  However, Peter pointed out, CP has always existed, alongside many other conditions and impairments, and this fact remains constant throughout the ages. What has evolved (a little) is how we label and consequently perceive and treat disabled people.

For me, hearing the word “handicap” throws me back to a time when I believed there was something wrong with me, and that I had to justify my place in the world. I spent my teen years believing I was not good enough, despite the academic results showing me otherwise. Going to Trinity and seeing how many resources they put in place to enable me to live independently, offered me a valuable perspective I’d never considered before. Learning that I was not a burden lifted a weight of responsibility from me that I hadn’t known that I’d been carrying. 

However, whether we like it or not, our experience of life colours our outlook. And even though, from an outsider’s viewpoint at least, I’ve achieved great things – a university degree, a job, marriage, our child – all of these blessings were underpinned by an inner belief that I didn’t deserve them, that I was just an imposter, waiting to be unmasked.

I’ve written about internalised oppression before, and my stance remains unchanged: I think it is one of the toughest barriers to true equality for disabled people. All our lives, we are constantly told, by a society that purports to know better, what we can and cannot do. We are told that we are a burden. We watch as those who tend to our needs, family members who we crave a relationship with on an equal basis, become burnt out. The dynamic shifts; we cannot possibly ever be equal in that position. People pity family carers, yet the governments still fails to understand that when our human rights are granted, pressure on those who love us also eases.

No parent should ever vocalise a wish to die before their children do. This has been an issue for decades, and the discussion is always the same. In order for the lives of disabled people to improve in a meaningful way, the government must commit to taking a rights-based approach. The government must change how disability is framed in our society. This won’t come naturally to a government that left an eleven year gap between signing up for the United Nations Convention on the Rights of People with Disabilities (UNCRPD) and its ratification. There’s always a great deal of conversation around the provision of disability services, but the government rarely address groups of disabled people themselves (or Disabled Persons Organisations, also known as DPOs) in making these provisions.

And I cannot help but wonder if it’s this lingering culture of seeing us as “other,” as those “smelly handicaps”, that prevents us from being seen as equals. Othering us makes it easier to deny our rights, to keep us separate from the mainstream. If you have not experienced this “othering”, you cannot imagine the effort it takes to try and come across as “normal”. How we sometimes try to hide the “unsavoury” realities of our impairments in the hope it leads to acceptance. How frightening it can be to ask for assistance, personal or technological, for fear that such a request may lead us to be seen as incapable. Kudos where it’s due: many aspects of our towns and cities are becoming more accessible to people with all kinds of impairments. Disability awareness training seems to be more commonplace.

However, until our human rights are truly recognised and met, the legacy of the “smelly handicap” will always be hiding around the corner, ready to take us by surprise.

Remembering the Father and Mother of the Independent Living Movement

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Judy Heumann and Ed Roberts are both recognised as prominent figures in the international Independent Living Movement. It is remarkable to think that two complete strangers from opposite ends of the United States would come together to spearhead what would evolve into an International Disability Rights Movement. This month, as we mark the anniversaries of their passings (Judy – 4 March 2022; Ed – 14 March 1995), I find myself reflecting on how the actions of these two individuals led to the formation of an army (in modern terms, a collective), that fought for equal rights for disabled people worldwide.

When I first started working with Offaly Centre for Independent Living in 2008, my first assignment was to research and understand the origins of the Independent Living Movement. I knew about Personal Assistance, but nothing about the existence of a civil rights movement for disabled people. I also knew about Rosa Parks’ refusal to give up her seat on the bus, but I’d never heard about the feisty New Yorker, Judy Heumann, who led a demonstration shutting down the streets of New York, before orchestrating what would become known as the “504 sit-in”. Nor had I heard of a young Californian called Ed Roberts who conquered his self-pity and established the first Center for Independent Living, after setting up an informal team of assistants that helped him live independently while he studied at the University of California in Berkeley.

Ed and Judy (I refer to them by their first names as I think of them as comrades or allies, not faraway idols) are often referred to as the Father and Mother of the Independent Living Movement. Both had polio, but Ed had acquired polio later in life, at the age of fourteen, and so he perceived himself differently to how Judy did – his journey to self – acceptance saw him transform from “helpless cripple” into a “star”, whereas Judy says in her autobiography, Being Heumann, that she always believed that she had a right to exist on an equal basis with others. Ed was also more significantly impaired than Judy, and one of the obstacles to his attending university was finding somewhere that could accommodate the 800lb lung he slept in at night. Ed was the first wheelchair user to attend the University of California and eventually, he was offered a wing of Cowell Hospital, the on-campus hospital, which he accepted with the caveat that he could treat it as a dorm, not a medical facility, with the same freedoms that non-disabled students enjoyed.

The establishment of the first Center for Independent Living in 1972, led by Ed and a group of disabled University of California students who dubbed themselves the Rolling Quads, marked the beginning of a battle for disabled people to have their civil rights recognised. By sharing their experiences and witnessing the nitty-gritty of each other’s lives, they formed a strong bond among themselves based on a mutual desire to enjoy a better quality of life, as equal citizens in America. Progress proved slow. In 1973, the Rehabilitation Act was passed, but Section 504 – which rendered it illegal for state-funded services to discriminate against persons on the basis of disability – was vetoed. Age-old excuses of cost of adaptations were trotted out as valid reasons to not sign the regulations, so passing the Act was merely paying lip service to equality for disabled people. 

By 1977, a frustrated Judy had had enough. In her eyes, and the eyes of her supporters and fellow activists, sitting around waiting for something drastic to happen was time wasted. Using her experience of successfully suing the State of New York for denying her a teaching licence as she was perceived to be a fire hazard, Judy and what was referred to at the time as an “army of the handicapped” gained access to and refused to leave the offices of Health, Welfare and Education in San Francisco. Judy was highly organised, and soon various committees had been established to organise food and bedding, as well as entertainment. Nonetheless, the physical impact of sleeping on mattresses on the floor was roughly felt by many protestors, many of whom developed bedsores. Despite this, it seemed that the protestors in San Francisco knew that there was too much at stake to back down.

In the later stages of the sit-in, Evan White, a news reporter, had amassed an impressive amount of footage of the protests. He described his jubilance at having the honour of sitting in during “meetings of strategy” with disabled protestors, as Judy led long meetings with fellow protestors every evening that often lasted into the wee morning hours. Everyone was given a say, and a job to do. By a stroke of luck, a nationwide television strike enabled Evan’s recorded reports to become front and centre of the country’s viewing schedule. This worried Califano more than the sit-ins themselves; it had the potential to damage his public image as a politician. On the twenty-fourth day of the sit-in, Section 504 was signed, a feat that was achieved by the will and determination of a strong collective of disabled people. (If you want to find out more about this sit-in, I recommend watching the award-winning Crip Camp on Netflix). 

Indeed, if we as activists can learn anything from Ed and Judy, it is that disabled people working together is the best way to attain our human rights. Having experienced discrimination and exclusion firsthand, we know best what we need. Although our lives are better than they were fifty years ago, we still battle to hold onto those hard-won rights that activists such as Ed and Judy, and here in Ireland, that Martin Naughton, Michael McCabe, Dermot Walsh, Ursula Hegarty and so many others fought for us to have. We must also come to accept that we work best as a collective. Nothing will change if we wallow in self-pity. Instead, we must use our experiences to make a better, more inclusive future for all of us. We owe it to Judy and Ed, and we owe it to ourselves, to never settle for a lesser life than the one we aspire to.

Dear Martin Naughton…

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A letter to Martin, eight years after your passing

(written after going to see No Magic Pill in the Black Box Theatre, Galway on 9 November 2024)

Dearest Martin,

There are around six hundred thousand people with disabilities, the term you used, in Ireland. Yet, for some reason, you seem to have had the biggest impact on many of our lives, regardless of disability. You were an extraordinary man, even though, just like your peers, you were probably made to feel “less than” for not “making an effort” to walk or try to conform to mainstream society. You taught us that the discrimination we faced was not our fault, through discovering this fact yourself.

I consider myself an intelligent woman, yet until we met, I genuinely thought that it was my duty to push myself to become almost normal. I did not believe it appropriate to highlight my own weaknesses and shortcomings, for fear they would be used against me. Until I met you, I thought I was great for hiding my struggles, for beating myself into a world that I didn’t seem to fit into, for doing everything myself rather than asking for help. When we met for the first time in 2005, the first thing I saw was an older man with greying hair. What could this auld one possibly know about life, I thought. Little did I know that it was down to the actions of you and your friends that had enabled me to have the relatively sheltered mainstream life I enjoyed, and by “sheltered”, I mean I was sheltered from feeling the full effects of institutionalisation, exclusion and rejection. 

That June day, in Chief O’Neill’s in Smithfield, you shattered my world into pieces, and I found myself questioning myself and everything I’d ever been taught. Was it heroic or folly to try to hide the elements of myself that made people uncomfortable? You led me to realise that there was nothing wrong with me, and that there never had been.

I remember our first conversation. You asked me if I knew what a Leader Forum was, and I said yes. We both knew I was lying, because at the time, there was no such thing. Yet something about you told me that I had to “fake it ‘til I make it.” From that moment on, I watched as an entire movement came to you looking for answers. It seemed that you always knew what to say and do. What was that like, were you honoured or did it piss you off from time to time?

From that fateful June day, you have been in the background of everything I have done and achieved; living independently, working with Offaly Centre for Independent Living, and when I was presented with the opportunity to get married and have a child. I thought of you and how you and others had led the fight that enabled me to have these luxuries (yes, they should be rights, but I think we’d agree that we’re not quite at that point yet). You lived as you pleased; you didn’t answer to anyone, something that so many of us continue to aspire to.

Like many of us, I put you on a pedestal. I always expected you to have the answers. Did you like this, as so many people intimated, or did you feel lonely? Please know that watching you spurred myself and so many others to find our own answers. If you could do it, anyone could. I recall when I worked for you that summer of 2005, how frustrated I became with you for asking me to set up a Leader Forum, but neglecting to give me any hints as to how to do this on a practical level. Now, twenty years later, I understand why: you wanted me to find the answers myself, to take risks, to fail and learn from my mistakes. I guess I should thank you for trusting me, because since then I’ve taken plenty of risks which have led to a life that was beyond reach for many of your generation.

I remember watching the last “action” you would ever take in September 2015, and shaking my head in frustration as members of the general public asked what it was about. It made me wonder why you even bothered trying to make a difference. Then I remembered that you have seen the grey walls of an institution. You truly understand what losing freedom and liberty is like, and that’s why you dedicated your life to ensuring that it didn’t happen again.

I guess all that’s left is to thank you. Thank you for coming into my life during a formative time, when I was still ashamed of being associated with the “disability sector” in any way. Thank you for changing how I value others and myself. I’d always connected my own self-worth to the tasks I could carry out unaccompanied, buying into a widespread consumerist belief that wearing yourself out in the name of productivity was akin to a badge of honour. Thank you for teaching me that my wobbly body was not the cause of my exclusion. Thank you for granting me the permission to speak out against the systemic discrimination that we face on a daily basis.

I don’t think you truly realise the profound impact you had on people. Christian O’Reilly has made it his life’s work to capture your story, not giving up until he had captured the essence of you. I have seen “No Magic Pill” twice now, and although the actors portrayed the characters to an Oscar-winning standard, it’s the feeling that seeped through my being both times I’ve watched it. Paddy Slattery and Eric Fitzgerald portrayed you in different ways, but watching them, it was you I felt beside me, as if I was being given a second chance to say goodbye properly. That said, it might be argued that even after eight years, we are not ready to say goodbye. Between “No Magic Pill” and your autobiography which was co-written with Joanna Marsden, we can hold onto you for that little bit longer.

Most importantly, thank you for being you, without which many of us would not be enjoying true Independent Living. May we always be strong enough to protect everything you and others ever fought for.

Love Sarah xx

Tuesday Thoughts: Pain in the Ass

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(aka JP’s affectionate term for me. Just kidding)

 (This post was inspired by Julie Helen’s column about her quest for a new wheelchair. I strongly encourage you to read her weekly column on EchoLive, where she writes about a wide variety of topics from a personal perspective.)

It was the weekend of my mother’s fifteenth anniversary that I discovered the letter in my postbox outside, and I took this as a sign. I opened it excitedly, knowing exactly what it was. At last, after fighting for the guts of three years, I had an appointment to administer a pain injection into the buttock of my right leg. This couldn’t come at a better time. The appointment was for Friday, 7 June 2024, and we were due to go to Australia on 1 July. I shivered in excitement at the thought of running around after my sister Alex’s little ones, Cathal and Grace, playing with them on the floor. For the first time in four years, I might sleep for more than two hours straight! Imagine waking up refreshed! Thus, I’d have more energy to write, and do courses, maybe even start cycling on the trike again (I do 2/3 45 minutes sessions on the exercise bike a week, but it’s not the same). 

As the day drew nearer, I did an extra physio session every day, as I dreamt about my pain-free life, smiling as I imagined folding up the wheelchair and throwing it into the spare room. I was tired, but I didn’t care. All of my hard work would be worth it when I was back wobbling around the place.

I don’t know what I was expecting from a little pain injection but suffice to say I will never know. Friday, 7 June was a sunny morning, and I beamed broadly as JP drove us up the M50 towards Tallaght. It seemed the universe was working in my favour; there was hardly any traffic, we didn’t miss our turn-off, and we were parking outside Tallaght University Hospital at 9.15am for our 10am appointment. JP was excited too; I’m sure I wake him often, tossing and turning all night. We found our waiting area quickly, and at 10.20am my name was called. When we reached the room, everything was waiting: the team of doctors, the ultrasound machine, the bed covered in tissue. It was a moment of triumph. I’d been fighting for this moment since November 2022, when they told me that there was nothing they could do for me. And now my recovery was about to start at last.

I was helped onto the bed and a team of doctors carefully pulled down my trousers and started the scan. Suddenly, one of the doctors asked for the head of department to come down. Apparently, even though I maintained that he was rubbing his scanner over the painful area, they couldn’t see my sciatic nerve. Now, I’m crap at biology – my Junior Cert teacher regularly read out my test answers to entertain the rest of the class for the comedy effect – but I do know the sciatic nerve is the main nerve, and if they couldn’t find it, I wasn’t sure I wanted them anywhere near my ass with a needle. 

 I was asked to sit up and I was helped back into my wheelchair. I tried to act like a professional patient, but I couldn’t stop the stinging tears rolling down my face. Your injury is probably just a contusion, they told me. You couldn’t stay still enough for the scan, and we can’t really see any damage. We’re sorry.

This has gone on for four years, I said. So you’re saying this pain is all in my head?

No, no, of course not. We’re saying there’s no silver bullet (Martin Naughton might say “No Magic Pill.”) Keep up the physio, painkillers, TENS etc. Pain management must be a priority in the long term.

Dammit. They warned me that would happen, but I’d pushed for the injection anyway. I have never felt more stupid. Driving home in the car, I saw my fantasy of getting my twenty-year-old body back disappear. More importantly, my dream of walking around Australia on my holidays vanished into thin air.

I never used a wheelchair in my life until I was nineteen years old. Day after day, I pushed through pain and tiredness as I trudged around the Sacred Heart School, going up and down stairs, navigating through the crowd. This was on top of cycling to and from school, every day, for six years. I was pretty darn proud of myself, I won’t lie. I developed an irritating superiority complex where I thought I was better than other disabled people. I was integrating myself like a fridge into a kitchen, becoming invisible in the process.

I have never felt more valuable as I did in my younger days, and now I can see how problematic that is. I’ve written before about my experience of internalised oppression, and even at the ripe age of forty, I struggle to shake it completely. The truth is, I am ashamed of how my mobility has deteriorated. I tend to view it as a personal failure to push myself, to take care of myself, rather than the result of years of trying to make my body do things it’s not designed to do. Sure, I made a choice to use a wheelchair so that I could have energy to write these blogs and hopefully, with Ali in secondary school now, re-enter the workforce and get involved again with the Independent Living Movement. I know the reasoning behind my decision was sound, and yet I haven’t fully dismantled the years of internalised oppression, so let’s face it – I’m an awful hypocrite.

The realisation that I wouldn’t be walking around by the time we went to Australia hit home like a sledgehammer. However, when we stayed with my baby sister in Australia this summer, I was determined to show her that I was still the same active rogue I’d always been. She’d sourced a steel walking frame from her neighbour Dell, and not having the heart to explain that I don’t really walk too far anymore, I accepted it with a grateful smile, while loading up on painkillers. For the first week or two of the holiday, I hobbled around the house, knowing what I wanted to do, but too ashamed to say anything. The second weekend we were in Oz, we all took a road trip up to Jurien Bay. Our accommodation was accessible, so I could use my wheelchair the entire weekend. 

When we got back to my sister’s house in Clarkson, without prompting or any pre-discussion, my sister Alex greeted me at the car door with my manual wheelchair. No words, no “I know you need this”, not even “I think this is a good idea.” That evening, I set the table, unloaded the dishwasher and hoovered, and I know my sister was struck by the difference in my independence and energy levels.  Not having to pretend was a relief for both of us, and I was surprised by how easily she accepted my need to use the chair – without question. She didn’t say she was sad, or disappointed, or ashamed – that was purely the narrative I’d woven in my own head, a stick I was using to beat myself up with. 

It got me thinking about the wider issues of equality and acceptance which, if you’ve read any of my other blogs, you’ll have gathered is something that I’m passionate about. But how can I expect other people to subscribe to the idea that disability is located outside the self, if I don’t? If I continue to connect my self-worth to my body’s ability to adapt within a society which, directly or otherwise, serves to exclude me, my self-esteem will plummet through the floor! More pertinently, I am handing the systems that discriminate against me a viable excuse to do so, on a silver platter. And whether I like it or not, I am not just an “I”. I am a “we”, a part of a wider collective trying to change attitudes and remove barriers, something I will not be able to do until I change my own attitude towards myself and accept myself in all its wobbly entirety.

Being underemployed at the moment, I cancelled a load of my subscriptions, but one I held onto was an affirmation app, which sends me random affirmations during the day. I admit I don’t always read them when my phone pings, but this morning I just happened to flick through them on my watch, as I sat on the toilet. “I am allowed to take up space,” “It is okay to have a hard day,” “I am patient with myself”, and “I have the motivation to create change,”” are just snippets of the messages that come through hourly. We need to change the messages that we as Disabled People are absorbing and, consequently, sending back out into the world. Most importantly, we need to change the stories we tell ourselves, about ourselves.

I often feel like a right pain in the ass when I write this kind of blog, but this – along with other authentic voices of Disabled People – is the only way to change the narrative around disability, for ourselves as well as within wider society. When we take control of the narrative, we can write our own endings, hopefully depicting a fairer world of acceptance and inclusion.

Tuesday Thoughts: Empty Batteries

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(written Wednesday, 20 March 2024)

There’s nothing more annoying than when your day is scuppered by a minor inconvenience. I can’t speak for anyone else’s kid, but I know mine is tired. It’s been a busy term with schoolwork and projects, bake sales and fashion shows, football matches and National Slow Down Day, mingled with visits to her new secondary school, weekend basketball matches, meeting up with friends and sleepovers. And as much as I want to sit on top of her sometimes to slow her down, I restrain myself, reminding myself she was practically locked up for six months of her childhood. No wonder she wants to do everything and make up for lost time.

Anyway, back to my day. Wednesday mornings are always slow, because of basketball training on Tuesdays, so I wasn’t surprised that the sprog ran out the door this morning with no lunch and, more importantly, to her mind at least, no mouthguard, without which she wouldn’t be allowed to play in her school football match. Luckily, we live ten minutes away so I hopped into my wheelchair and flew down to the school to drop it off. Now, the school is a kilometre away, which makes it a two k-round-trip, which is nothing to my wheelchair, an Invacare Storm. However, coming back into my driveway, I noticed that one of the “bars” had disappeared. One bar of five. 

So, logically, you might think, well that means you could get ten kilometres from a full charge. And you would be correct, if it wasn’t for the fact that my wheelchair is long overdue a service. Any seasoned powerchair user will tell you that four bars left doesn’t necessarily mean your battery capacity’s at eighty percent. If you’re a gobshite like me, you might even try to push the limits of your wheelchair battery, a dangerous game. You know in your heart, as you set out to the shop a mere four hundred metres away, that the sodding thing could stop dead without warning at any time. You know it, and yet you still take the risk, trying to ignore what the universe tells you.

Because the world goes on, right? Who has time to wait for parts to come when there’s dogs to walk, basketball training, shopping to do? My front tyres are beyond bald, and my back tyres aren’t far behind. You can actually see the rubber underneath, which I’ve never seen before. Beyond threadbare. Realistically I shouldn’t be using it at all. 

And it made me think about how we push ourselves to keep going, even when all the signs are telling us to stop. Resting and taking time off have become dirty words in our culture. I read somewhere recently that, thanks to the convenience of remote working, some of us are working sixty/seventy-hour weeks, for no increase in wages. We live in precarious and stressful times. The cost of living has become untenable. (I read a 1984-esque article the other day, which said that the cost of living was starting to come down. Sure, coming down from a twenty-year high). We’re working harder than ever, with little extra to show for it. 

In addition, this winter (in my unqualified opinion) has been one of the worst for bugs and viruses. Alison has missed eleven days of school this year. This is a child who was never sick; who, until COVID, had near-perfect attendance records. Now I find myself trying to ply her with vitamins and tonics in the hope of keeping her well. The obvious reason is that because we were locked up for so long, we weren’t exposed to any viruses and now our immune systems have gone to pot. And it isn’t just children, either; so many adults I know have been wiped out in the last few months by various complaints. 

The saddest part of this is that lockdown taught us some valuable lessons that we seem to have forgotten. Many adored the slower pace of life and swore that they’d never go back to normal. People started exercising more, cooking healthier meals, pursuing the hobbies they’d never found time for. We promised we’d always make time for our loved ones, and for ourselves. Now, we’re busier than ever, desperate to make up for lost time. Coupled with the barrage of news about Gaza and Ukraine (and as I write this, Leo Varadkar has just stepped down as Taoiseach. Never liked him; he never did answer my open letter), we continue to live in uncertain times. Then, haven’t we always lived in uncertain times? The Troubles, 9/11, the London bombing, Paris and so on. Such is the nature of the world we live in: it doesn’t stop.

That doesn’t mean that we shouldn’t, as I was reminded a few months ago when I hit a wall. Funny how it’s only when the battery has fully drained do I acknowledge that there might be a problem. I won’t go into the boring details of what caused it, but I will admit that I ignored all the warning signs. My chronic pain was flaring because of the cold weather, and I was wrecked from lack of sleep. But I was still able to keep house and parent, so it wasn’t serious, right? Wrong. Nonetheless, I completed the first stage of my editing course, but at a cost. I was like a zombie, with a chip – the slightest thing made me either angry, or cry like a baby. The more I tried to push through, the harder it got. It felt as though a force from beneath was trying to suck me into the ground.

When did you start feeling like this? My husband asked.

October, I sheepishly admitted. 

This was the end of January, after Alison’s confirmation. I was so exhausted, and I didn’t know why. I don’t have a taxing life. I don’t work 9-5, my child is now a preteen and I get help around the house. Yet, I ignored the warning signs. My chronic pain was through the roof, and instead of taking note and putting on my TENS machine, I was pretending it didn’t exist. Instead of napping to make up for the broken sleep, I was sitting in front of the laptop writing gibberish. I was officially empty. It was scary, but I’m slowly coming out of it now.

My wheelchair needs a full service, having not had one in nearly four years. Chances are I might have to apply for a new one, because at the moment I don’t trust it, and even the best wheelchairs have a shelf life. And we humans also have a shelf life. I am a huge fan of Mel Robbins, motivational speaker, (I wish I could apply all her advice to my life; I think I’d be on my tenth bestseller now), and in one of her podcasts, she pointed out that we have not taken time to heal from the collective trauma that COVID has triggered, and that as we rush back to normal, we need to find ways of processing that, as well as looking after ourselves physically and mentally. Coupled with international unrest and whispers of another economic crisis, we have not allowed ourselves to heal. So how can we be our best selves?

At the end of the day, my wheelchair is a tool, which can be repaired or replaced. But we are not tools. Our sole purpose is not to produce, but to live, love, and experience the world. In the grand trajectory of the lifespan of the universe, we are here but for a few short seconds. And in order to make a difference, we have to be in tip-top condition.

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship.