Tuesday Thoughts: Life is But a Dream…

Posted on December 5, 2023 by sarahfitzgerald1984

Getting up at six isn’t easy, but I know I’ll feel better afterwards. While my husband snores beside me after coming home late from work, I pull on the tracksuit that I’ve laid out the night before. I always hate this part, and find myself questioning the auld sanity, but I know I’ll feel better afterwards. I always do.

Down the hall, I can hear the familiar sound of the front door opening, the clinking of my favourite bowl being extracted from the cupboard and the shaking of a cereal box. I look at my watch: 6.30. Right on time. I sit into my wheelchair and go down to my kitchen, where Mary* is waiting for me. She’s poured me exactly a third of a pint glass of orange juice and half a bowl of Bran Flakes, though she’s waited for me before pouring the milk; she knows I don’t like soggy cereal. She also knows I don’t like too much milk. As I munch it down, she clears the breakfast things away, wipes the counter and sweeps the floor. Then it’s 6.45. Time to go.

As always, Mary has started the car so that the windscreen is clear and, of course, so that it’s nice and toasty on this frosty morning. She lowers the ramp and I drive into the car, waiting for Mary to secure the chair with the clamps, just as I’ve trained her to do. Then I’m whisked to Aura, our local gym, for my morning workout session. Mary has sat in on my physio sessions, so she knows exactly what I should be doing. She sets up the equipment for me, making sure that I’m seated correctly so that I don’t strain myself, and so the physical torture begins. Mary laughs, saying that the only weight she’s lifting will be her cup of coffee to her mouth. Too early for this shite, she says.

Afterwards, it’s back to the car and a quick stop at the shop for milk and bread. I give Mary my card so that she doesn’t have to undo the clamps for the sake of a few minutes. She returns with my card, a receipt and the groceries, standard procedure although I’ve trusted her with far more important and delicate things. Then it’s a quarter to eight and back home, where the preteen has just risen. I put on two slices of toast. Mary takes out the plate and the butter. The preteen is unusually chatty today. She’s used to Mary; she knows what Mary’s purpose is, and more importantly, what it is not. Mary never comments on my child’s behaviour. She knows that it’s not her place.

After the child leaves, Mary leaves too. Everything is tidy, meaning that nothing will distract me from my work (apart from my dogs barking at each other, or at random birds flitting past the window). It’s nine o’clock, and I normally have my first thousand words completed by eleven. By that stage, I’m fit to drop, and typically at this time, depending on what household chores await me, I take a forty-five minute nap, just to keep myself right. Then it’s dogs on leads and we go for a short walk, to clear the cobwebs from my brain.

When I return home, Emma* is waiting for me. We cook the evening meal together: she chops the veg and preps the meat, I fry it up. She also cleans as we go, so that we don’t have a big job ahead of us later. My favourite is homecooked lasagne, or chicken stir fry. I’ve taught Emma how to marinade the chicken in garlic and soy sauce. It’s the young’un’s favourite meal.

No two days are the same. Sometimes I might need Emma or Mary to accompany me to Dublin for medical appointments. Other days, I might need help in organising the materials for the Creative Writing Classes that I teach across Laois and Offaly, or the grinds I give to Leaving Cert English Students. We also tour the country a couple of times a month in my accessible van, giving disability awareness training to secondary school students. On those days, a Personal Assistant might have to work longer hours, and so I allow them to take time in lieu on a less busy day to compensate. After all, it is their dedication and attention to detail that allows me to live the life I do, a life entirely of my own choosing.

I jest.

This is not my life. Well, it is and it isn’t. I wish I was motivated enough to get up at six in the morning, but alas, here we are. It’s certainly the one I aspire to, the one I try to fulfil. And, to be fair, I have a good life. I’m married, I have a child, I work as much as I can freelance. And I do have three dedicated, hard-working Personal Assistants, who are always willing to go the extra mile for me. They are simply wonderful people and I love them to bits.

However, I don’t necessarily have a service that offers the freedom and control that I might like. Nor can I choose my own times, owing to the demand on the service. I cannot emphasise enough how dedicated my PAs are, and how much pride they take in their work. It is nothing short of remarkable, considering how exhausted they must be; all of them are required to work with multiple clients on any given day. It takes a special kind of person to remember the preferences of each individual Leader, to try and fulfil somebody’s needs in a limited space of time, and to do all of this with a smile and not a hint of a complaint. For this, I am truly grateful.

That said, this style of service provision does not do the Leader or PA justice. For the Leader, it offers no opportunities of spontaneity and, depending on the nature of their impairment, leaves them at risk of isolation from their communities, especially in this post-covid world where everyone (rightfully) is sick of online meetings, and in-person events are becoming more prevalent. Remember during the height of Covid, when we weren’t “allowed” to meet each other, go for coffees or even take our time looking around the shops? For some disabled people, this continues to be their reality. During lockdown, I found it interesting, and admittedly amusing, to hear that some people couldn’t hack it, and yet for some reason, it’s okay to imprison disabled people in their homes as long as they have access to the internet (or not, as the case may be).

For the PA, this style of work – hopping from client to client – is more lucrative, but exhausting. At the moment, there is little distinction between PA and home help. Typically, a home help is given approximately forty-five minutes to help a client out of bed, get them washed, dressed and have breakfast. Then off that person goes to do the same for somebody else. Home help agencies have high turnover of staff, and it’s not difficult to see why. Often, they might have to drive from one end of the county to the other, just to do an hour’s work. I’ve heard of home helps working twelve-to-fourteen hour shifts, visiting six or seven different people in this time. Six or seven people, with different needs and care plans, who may only be allocated enough time to be washed and fed, if that. What kind of life is that, I ask you? Could you live like that and not lose your brain? A study conducted by Pauline Conroy found that a Leader who is lucky enough to receive a service has a PA for about 45 minutes per day. How is it possible to squeeze a meaningful life into less than an hour a day?

This is why I find myself writing about the same thing over and over again. I’m sick of reading about the “poor, vulnerable disabled people, suffering at the hands of cutbacks.” I know hundreds of disabled people, and I cannot think of a single one that I would classify as “vulnerable.” Those I consider “my tribe”, in the words of artist Mary Duffy, are intelligent, strong, confident, capable and willing to contribute. Willing to fight for the quality of life that they deserve, and always have deserved. Committed to ensuring that the authentic voices of disabled people are heard and taken seriously by the powers that be. But they are also tired. Tired of having to fight for every little thing. Tired of the excuses “there’s no staff”, “we don’t have that kind of money.” Tired of being made to feel guilty for their lack of gratitude: “There’s so many people who don’t have what you do.”

As a collective, disabled people have achieved so much in their lifetime for the advancement of their human rights. But wouldn’t it be lovely to be able to focus on the minutiae of everyday life instead, such as “I want to go for a coffee with friends at one o’clock” or “I think I’ll have a lie-in in the morning”?

Independent Living Movement Ireland (ILMI) are committed to making this a reality. Formerly known as the Center for Independent Living, ILMI have been working since 2018 on their #PASNow Campaign, which calls for the legislation of the Personal Assistant Service (PAS). This would have many benefits. Firstly, it would offer some protection against the savage cutbacks that the service has endured since 2008 onwards, as ideally, the funding for PAS would be ringfenced. Secondly, it would be a step towards recognising that the PA service should be rights-based, not just something given on the basis of an impersonal, medical assessment. This would mean that Ireland could fulfil their obligations under Article 19 of the UNCRPD, which details the right to independent living. Thirdly, and perhaps most significantly, disabled people would be independent of their families and loved ones, absolving them from labels such as “burden” or “object of care”.

On Wednesday, 22 November 2023, ILMI launched their research paper “Not in the Driving Seat: Reliance on family for supports and the impact it has on disabled people.” The reference to “driving seat” comes directly from Martin Naughton, who is internationally recognised as being one of the main figures behind bringing Independent Living to Ireland. The report offers a counternarrative to the traditional spiel of disabled people as vulnerable. The struggles of family carers experiencing burnout has begun to be recognised over the last few years, but this is the first study focusing on the physical and psychological impact that relying on family has on the disabled person themselves. Des Kenny, close friend and ILMI Chairperson notes: “Investment in supports that liberate disabled people will also liberate family members to move from roles where they provide support for their partners, children, or siblings and can focus solely on their family relationships.” I would like to personally commend all involved in this work and to thank ILMI for continuing to push its #PASNow Campaign.

I know I have written about this many times before; this blog might as well be called “The fight for independent living.” And I’m sorry if you’re sick of reading it; trust me, I’m sick of writing it. Yes, we have made great progress in shifting the thinking around disability from pity and oppression to empowerment and rights, but even after thirty-one years, there is still so much to do. It’s tiring, and easy to lose heart, but the only way we can counteract the narrative of pity is to keep pushing our own, in the hope that one day, it will be universally understood. In the hope that one day, in the not-too-distant future, disabled people will have the freedom and choice to do what they want, whenever they want to do it.

*Mary and Emma are entirely fictional, similar to the right to Independent Living in 2023

The Important Conversations – Tuesday Thoughts 4

Posted on June 25, 2023 by sarahfitzgerald1984

(Published Sunday 25 June 2023 due to holidays)

Let me take you back to January 2008. I’m working with the Offaly Centre for Independent Living, my first job after graduating from Trinity with an English Degree. I’m twenty-three, and I think I’m the cat’s pyjamas. I’ve landed a job here on the FAS Scheme with little to no experience. Trouble is, I don’t quite know what my role is. I want to add something, but I’m not sure what I’m adding to.

I google Independent Living and read definitions that at one stage, I could recite verbatim. I’m starting to think that my new job isn’t all that exciting. Then I come across the story of Ed Roberts, and suddenly I’m captivated. It’s the story of a very ordinary boy who, in his early teens, contracted polio and was left almost completely paradise. He’d written himself off, fervently wishing to die until he was told that if it was truly his wish, then so be it. Suddenly, Ed realised that it was freedom of choice he was craving and that he wanted to live.

I’m hooked. I need to know more. I come across another name, Judy Heumann, and my mouth falls open as I learn that she and Ed were at the centre of the establishment of an entire human rights movement. There’s more information about them both – interviews, short films – and I realise, as I waste away another day in front of my laptop, that it’s these stories that are making me more curious about Independent Living. These real, personal stories.

I gain permission from my manager, the late Michael Nestor, to capture these stories. But I’m young and inexperienced, and my overall efforts are a bit crappy. I don’t prepare the questions properly, I don’t bother to prod people or encourage them to talk. I’m going in with my preconceived ideas about what people are going to say. As a result, the finished product is a flop, and there’s no uniformity in the collection. No common theme emerges. And I convince myself that maybe I’m not as interested in Independent Living as I once believed.

Still, the idea of capturing the Independent Living Movement in some tangible way never strayed far from my thoughts. It’s said that one reason for writing a book is because as a writer, you wish to discover something, rather than to impart wisdom that you already know. In 2014, I decide that I wanted to write full-time, a decision that frightens me to this very day. I’ve always loved reading stories, and I want to capture some of my own. I start to move away from disability activism. Alas, something terrible would happen and whether I like it or not, I’m about to be roped back in.

On the 13 October 2016, RTE announces that the father of the Irish Independent Living Movement, Martin Naughton, has passed away at the age of 62. It can’t be true. Surely Martin is invincible? I genuinely believe that the bottom has just fallen out of the disability movement. Who would take over? Little do I realise that nobody needed to “take over”, that for years, several other disability activists had been coming together to bring about much-needed social change. I know that there had been a historical protest in September 2012, rallying against the eradication of Personal Assistance for disabled people in Ireland, but who had been involved? What had been sacrificed? Were they scared? Did they ever just get tired of the whole bloody racket and vowed to give up? For some reason, I need answers to these questions. I need to know that, if I’m going to join a disability movement, that it’s not going to be a waste of my time and energy. I need to know that this movement truly belongs to disabled people.

I’m being arrogant again. I know nothing. A week after Martin’s passing, a group of us are brought together to discuss a commemorative event. I’ve heard of many of these people, including Ann Marie Flanagan and Shelly Gaynor, but I’ve never met them before. I was following them in a quest to create a space to talk openly about rights and self-determination, but I was joining the motorway from a different exit. I wanted to know more. I asked permission to set up a blog to gather these stories. But it still wasn’t enough for me.

Another reason for writing a book is to create something that you’d want to read yourself. I’d always wanted to read about the history of the Independent Living Movement in Ireland, not just about dates, but I want to capture the human passion behind it. How do you nurture that inner self-belief that you truly belong in the world? Working on the commemorative event, I realise that camaraderie is a huge part of it. Activism isn’t just about marches and policies; it’s those little chats in the pub afterwards where you expose your vulnerabilities to other people. That’s how you learn to trust in each other, and come together for a collective cause. As I hear other people talking about Martin Naughton, what struck me was how many people remark “I didn’t know that I could do x, y or z, but Martin believed I could, and so I did it.” That, to me, is powerful, and I wondered how I could collect these stories and inform others about the power of the collective.

One thing I learned when I worked in the area of independent living is that people don’t always relate to academic definitions or legal jargon. They connect to each other, something that became increasingly obvious in the early days of the COVID pandemic. Independent Living Movement Ireland committed to creating online spaces where seasoned and emerging activists alike could share experiences with each other. In April 2020, with no hope or expectation whatsoever, I approach Des Kenny, Chair of Independent Living Movement Ireland (ILMI), with an idea that we could capture these stories. His support and encouragement led me to approach Damien Walshe, CEO of ILMI, with a rough proposal. To my surprise, he agreed that ILMI and the Independent Living Movement should document these histories, and would I like to have the honour of doing it?

I was thrilled. – But shouldn’t you call in a professional? I asked.

-You are a professional, I was told. You’re a disabled writer with lived experience. Now put that useless doubt to one side and get on with it. That wasn’t what I was told, of course. Damien and Des are kind, diplomatic gentlemen. What they actually said was: “We wouldn’t let you near it if we thought you weren’t up for the job.”

And so, we invited a number of activists to recount their stories to a live Zoom audience on Wednesday nights during the summer of 2020. Ellis Palmer, talented BBC journalist, suggested that the sessions should be made into podcasts, and made available on the ILMI website.

I admit, I didn’t really give much thought about what I’d signed up for. I’d done transcription work before, but I was nervous about doing this. I wanted to capture the unique voices of those who were to be included, so the transcriptions were word-for-word, then edited so that I wasn’t tempted to include my own slant on their stories. The actual progress is laborious and time-consuming, but completely worth it. It’s the only way to capture the authenticity of these pieces, and for these activists to have ownership over their own words.

I cannot stress enough that the final product, Conversations about Activism and Change: Thirty Years of Independent Living Movement Ireland and Disability Rights is not a definitive history of the disability movement, but rather my first attempt in capturing part of it. If I had my way, I would still be interviewing disabled activists and transcribing their stories, but alas, I’m only human, and we needed to agree an end goal. These stories are intensely personal. Details of personal and political struggles can be sad to read. What shines through the entire collection is the recognition on the part of all the storytellers that they were not alone. Once they wrestled with the internalised oppression, which is a byproduct of an over-medicalised childhood, they learned how, through working together, to recognise and tackle societal and attitudinal barriers. Some stories include subtle nods to fallen comrades who influenced them as activists. There’s a consensus that although much has been achieved, we still need to keep fighting to be recognised as citizens with rights as opposed to objects of care.

Conversations about Activism and Change is the book I yearned to read when I started working in the area of Independent Living, and I am so relieved to know that younger activists coming up behind me will have some sort of blueprint for campaigning for equal rights in the future. It is my dream that the language of equality and human rights will override the long-seated discourse of pity, charity and helplessness that is so deeply intertwined with disability in Irish culture. And the only way this will ever happen is if we continue to use our own voices to create those important counter-narratives, to have the courage and conviction to speak for ourselves and own our own histories.

Conversations about Activism and Change: Independent Living Movement Ireland and Thirty Years of Disability Rights

Available on Amazon as paperback and for Kindle:

Should I Be Fixed? – Tuesday Thoughts 1

Posted on June 6, 2023 by sarahfitzgerald1984

Apologies folks for the long silence. I was trying to decide what to do with this here blog, whether to shelve it or archive it, and after a lot of soul-searching (and talks with my patient husband and some writer friends, including the long-suffering Ken Mooney), I’ve decided to commit for the next number of weeks to have something ready to post every Tuesday, but – full disclaimer – this may or may not happen. Watch this space!

The topic of this week’s unmissable instalment is timely, linking in with two separate things – the novel I’m hacking away at, and a new programme that will be available soon on BBC Reels featuring activist Paddy Smyth entitled Should I Be Fixed? Like myself, Paddy also has Cerebral Palsy, and like many of us, he’s had his own journey to self-acceptance and feeling comfortable with his disabled identity. I learned about the programme by accident, when I was farting around online this morning instead of writing my novel.

Paddy did a radio interview with Ray D’arcy, discussing the upcoming programme. He spoke candidly about the aftermath of his experiences on the RTE programme, First Dates, which aired in 2019. “I thought I’d be loved,” he said, recalling that some of the comments he received following the show were quite negative. “Some people accused me of using my disability to win.” I can only imagine how hurtful that was.

Paddy’s journey to self-acceptance shares some parallels with mine, and also with Rachel’s, the character who I’ve been trying to write a novel about for the last eight years(!!!) Lately, I’ve managed to gather some momentum with telling Rachel’s story (nearly back up to 60k, yay!), but only because I took some time out to do some real self-reflection. I had to learn to be comfortable with some heavy realisations. The first one is, crucially, that I seem to have a penchant for punishing myself for my impairment. Since starting to use a wheelchair, my output and productivity has gone through the roof. My sleep has improved, I’m writing every single day, and I also manage four sessions a week on my exercise bike. And once I sort out the flat tyre on my tricycle, I’ll be back on that as well, especially in this good weather. My life has become so much richer, and yet I still berate myself for not walking more, because the overarching message from society continues to dictate that I am somehow worth less if I’m not at my physical best.

I caught a glimpse of a programme the other night, This Time Next Year hosted by Lorraine Kelly, where one of the guests were a wheelchair user and more than anything, she wanted to relearn how to walk using a prosthetic limb. And of course, that was the happy ending of the programme. That was her wish, and she worked long and hard to ensure that wish was realised. Healthwise, it is better for this lady to be walking than to be sitting in a wheelchair all day long. But this particular message – of fixing one’s body or hiding or minimising one’s impairments – seems to be more palatable to a wider audience than the idea that disabled people/people with impairments are perfectly acceptable as they are, and that self-acceptance is more productive and healthier than becoming obsessed with cures.

Technological advances aren’t always the blessings that they appear to be. For example, AI (Artificial Intelligence) can now write content for websites, threatening my job (nooooo!) and the jobs of many other content creators across the globe. Think about it: why should a company pay me for content articles when they could save money and use an algorithm instead? No proofreading needed there, because there is no human error. Similarly, prosthetics and robotic limbs have helped many disabled people regain their independence, but they aren’t for everyone. To ask a disabled person if they have considered prosthetics may come across as offensive, given the struggle that many of us have with our bodies. Technology has advanced to a point where there is now a wheelchair that can scale a flight of steps (not available from the HSE though, I’m sure). Some people think that’s beyond cool.

But this obsession with finding ways for people to overcome physical barriers puts the responsibility back on the disabled person, which isn’t right. Surely making our world accessible to everyone is a more sustainable and measured approach? Isn’t it weird that we live in possibly the most accepting time in history in terms of sexuality and identity politics, and yet it’s still an act of rebellion to embrace and love one’s disabled self? If a venue doesn’t have ramps or lifts, it’s a safe bet that there’s no Braille, or induction loops for hearing aid users, or easy-to-read menus and promotional material. In the absence of provisions, disabled people are forced to adapt to a world that was not built with them in mind. Because of the inaccessible environment, we are often left on the outside.

We are all getting older. People are living longer, making them susceptible to illness and disability. COVID have left many people wrestling conditions like Fibromyalgia; it’s estimated that 20% of those recovered from COVID have Long COVID or lasting effects from the illness. The pandemic reminded us of the frailty of the human condition. Why are so many people obsessed with finding a “fix” or a “cure” for disabled people in a world that is so broken? And in an age of social media, will it always be an act of rebellion to be our true selves?

Should I Be Fixed will be on BBC Reel on 21 June 2023.

A Wheely Wise Decision

Posted on March 1, 2023 by sarahfitzgerald1984

(Don’t worry, I’m groaning at the awful pun. too).

Three weeks ago, I finally reached my breaking point. It had been coming for a while, and I had dodged it successfully all this time, but I couldn’t avoid it any longer. I had been awake with pain for two nights in a row, and was so painfully tired that I thought I would vomit. I actually did no less than ten Covid antigen tests, thinking that there was another explanation. There wasn’t.

I was just tired. Tired of pretending that my pain didn’t affect me. Tired of trying to keep myself mobile, without having the energy to do anything else. I hadn’t written anything in days, and consequently I was snapping at my daughter over the slightest thing. I was crying at the smallest, insignificant inconvenience. Three weeks ago, I’d had enough, and so I sat at my laptop and opened the pinned tab that had been saved since October, and I said fuck it, and I bought the wheelchair that I’d been himming and hawing over since I received my long-term pain diagnosis in November.

Then I cried. Big, ugly, wailing tears. What had I done? Was I admitting defeat? Holding up my hands and saying that I was giving up hope of getting my mobility back? I wondered what my mum and dad would think, after all my years of physiotherapy and cycling to school. I only started to use a wheelchair in my twenties. Would they be disappointed, or would they understand?

When I calmed down and thought about it rationally, I knew my parents wouldn’t mind as long as I was happy (besides which, I’m almost thirty-nine, so I have to stop worrying about what they, and indeed other people, think). And I also had to consider my priorities. I need to write more than what I’m currently producing, and I also need to look after my family, physically and mentally. I won’t be able to achieve any of this if I am exhausted. Those I love deserve better – hell, I do, too. For too long, I have been obsessed with proving my worth, a worth tied up in the traditional mantra of lots of output and productiveness. But even a machine cannot work to its full potential if its parts aren’t working properly.

I’m not a machine, I’m a person. And the wheelchair isn’t a part of me – it’s a tool.

The wheelchair arrived at last on Monday morning, in a big cardboard box. Initially, I was going to put the box straight into the spare room, but my husband stopped me.

“You’ve not spent all that money on a wheelchair just to have it gathering dust,” he said, hauling the box into the kitchen.

After unboxing the wheelchair, I realised that I was looking at the answer to many of my problems. I tested it out around the house, leaving the footplates off so that I could propel it with my feet. It’s light, and for me, it’s far easier than trying to use an electric chair in our house, as I’d been doing on and off for the last three months. Today (Wednesday) marks day three of using the manual wheelchair, and since Monday, I’ve done four loads of laundry, written this blog and added 1,500 words to my novel, prepped meals and swept floors. And I’m still wrecked, but at least now I’ve something to show for it, which wasn’t the case this day last week.

Photo shows a lovely blue manual wheelchair, sans footplates.

Cerebral Palsy is not progressive. However, years of unsteady gait, falls, kneeling on the floor, and pushing ourselves to do things that our bodies were simply not made to do are bound to take a physical toll. You might have noticed that I’ve had a hard time accepting this. And as a dear friend pointed out to me recently, I shouldn’t. I’ve always been fiercely independent, and deciding to use a wheelchair more often will only enhance that. Less falls will lead to less pain. It might even lend me the energy and impetus to get back on my exercise bike, and hopefully onto my tricycle in the summer. My friend’s tough love approach has prompted me to focus on the future with excitement and hope (although if she reminds me again that I am pushing forty, she may get a clip around the ear).

Today (1 March) is International Wheelchair Day (which I didn’t know was a thing until this morning, but is quite timely, all things considered), a day for reflecting on and celebrating the positive impact that wheelchairs have on the people who use them (it is estimated that over 40,000 people in Ireland alone use wheelchairs either full or part-time). It is also worth remembering that the barriers that wheelchair users encounter – steps, inaccessible buildings, undipped footpaths – can all be fixed in order to promote inclusion for us all. And although we have made great progress, there are always improvements that could be made to ensure that services and amenities are accessible to everyone.

There you have it, my first blog in months, all thanks to me using my shiny new wheelchair to conserve my energy. Now off I go to tidy my kitchen, make some dinner and hang up some clothes.

Grasping the Nettle

Posted on November 30, 2022 by sarahfitzgerald1984

I believe in the importance of words. I’m a writer, someone who tries every day to forge a career by stringing words together. I know that some words can have more impact than others. Some words are deliberately provocative, while others can hurt as silently as a nettle’s sting – irritating, but unnoticed by the nettle itself. The nettle’s sole purpose isn’t to hurt; it’s to protect itself, to grow. In fact, nettles have fantastic healing properties. And though I’m not an adventurous eater, one day I hope to accumulate enough courage to try nettle soup.

It’s also said that if you grasp a nettle, tight in your hand, it won’t sting, or at least not as badly as it might if you just brush against it gently. And of course, the good old dock leaf is a tried and proven antidote to that peppery red rash. But, I needed more than a dock leaf to draw out the sting of the consultant’s words in Tallaght two weeks ago.

I’ve had pain on and off for over two years now. I’ve been on a strict physio regime, which I’ve obediently adhered to, but some nights, the cramping in my leg keeps me up for hours. Which means that I’m tired the next day, too tired to use my exercise bike or do any writing. My physio said that I have to choose my tasks carefully, and frankly, I detest being told what to do. Granted, some of the things I’ve been known to do is downright ridiculous. I used to dust my skirting boards on a regular basis. I like hoovering on my knees because it’s easier to keep my balance, also, it’s easier to spot the dirt on the floor. The physio has forbidden me from doing these things, which only makes me do them more. Surprise, surprise!

So, when I went to see the consultant in Tallaght, after travelling all the way up on the train, I was devastated to hear him say the words “long-term chronic pain condition.” I hadn’t been calling it that; I’d been referring to it as “a bit of leg pain,” “sciatica” at worst. (They don’t think it’s sciatica, but they reckon the nerve is trapped inside the periformis muscle). The thought of having broken sleep indefinitely was devastating, but there’s nothing they can do. I’ve refused the medication offered because I’ve read about the side effects, and owing to the involuntary movements, I’m not a candidate for pain injections. Go home, and do physio. It may improve, it may not. Nobody knows.

The guilt I felt was overwhelming. Despite all of my best efforts, I was now feeling like a burden to my husband and daughter, something I’d never wanted to happen. I felt like I’d failed my parents as well, after they’d invested so much time in making me mobile and independent. Chronic Pain condition. A different CP, another label used to define me. Hadn’t I enough of those already? The consultant said that all I could do was go home and do my own research. I’ve changed my diet, and I’m starting to come around to the idea of pacing out more onerous tasks. One thing that my husband and I discussed was getting a manual chair for knocking around the house in, on days when the pain is particularly bad. But I can’t bring myself to do it. Every time I look online for chairs that might be suitable, or asking the HSE for one, I end up folding the laptop screen down and saying not yet. I’m not ready. I might become lazy, or overdependent on it. I’m tired of being tired, though, and something’s gotta give.

Yesterday, I was trying to write, when a friend of mine called in unexpectedly. I was so excited to see him, having not seen him in person since the beginning of Covid. We had a good chat about various things, and suddenly he smiled and said, “Do you realise that something you said changed my life?”

I laughed. “Something I said? Take all my advice with a grain of salt.”

He recounted the incident. It was about seven years ago. We’d been at a personal development day together, and the facilitator asked us to set out our short term, medium term and long-term goals. My friend’s long-term goal was to be able to walk from his house to his gate, without his stick. And in front of everyone, I’d asked him why this was so important to him.

I relived that horrible feeling of shame. “I regretted it the minute I said it. I’ll never forget how hurt you looked.”

He smiled at me. “It was the best thing you could have said to me. After that, I decided to concentrate on what was important, and what I could do. And to re-evaluate my relationship with my stick. This stick enables me to walk and keep my independence. Because of the stick, I can stay mobile. I can go to meetings and get involved in local activism. It’s nothing to be ashamed of. You taught me that.”

It’s true – I did. I really wanted my friend to understand how the social model liberates us from blaming ourselves for our disabilities. And yet, here I am now, having to wrestle with a whole new meaning of what independence means for me. A definition that, for much of my life, focused on my physical abilities and strengths. I’ve always been fit. I used to cycle everywhere. I’m still walking a bit, something I didn’t think I’d be doing when I fell and acquired my injury, two years ago. But as difficult as it is, I need to reassess my priorities. Is it really important to be able to scrub the grouting of my tiles with a toothbrush? Can I successfully balance the roles of mother, wife and writer while avoiding as much pain as possible?

If I had the answers to those questions, I’d be laughing. The only way I’ll know is trial and error. Isn’t that how we make all our greatest personal discoveries? I wish I could be a little easier on myself. If I can find the courage to grasp that nettle, maybe it won’t sting too much in the long run.

“No Magic Pill”: A Perfect Tribute to our friend Martin Naughton

Posted on October 12, 2022 by sarahfitzgerald1984

Screenplay/Writer: Christian O’Reilly

Producer: Raymond Keane

Performed by: Sorcha Curley, Mark Fitzgerald, Peter Kearns, Ferdia MacAonghusa, Julie Sharkey and Paddy Slattery

Dramaturg & Disability Consultant: Peter Kearns

Set Design: Ger Clancy

Lighting Design: Sarah Jane Shiels

Costume Design: Deirdre Dwyer

Music and Sound Design: Trevor Knight

Movement Director: Rachel Parry

Voice Coach: Andrea Ainsworth

It takes a special kind of person to inspire the writing of an entire play. And only an extraordinary person would have his role in the play performed by someone who knew him and held him in the highest regard. Having seen No Magic Pill in the Civic Theatre, Tallaght on 9 October last, I know that I am not alone in my gratitude for being able to witness such a fitting celebration of Martin Naughton’s life.

Writer and playwright Christian O’Reilly has always been an important ally and friend to the Independent Living Movement. From his very first encounter with Martin Naughton twenty-seven years ago, his ambition has always been to capture Martin’s story in a way that would appeal to and educate a wider mainstream audience. His critically acclaimed film, Inside I’m Dancing (known as Rory O’Shea Was Here in the US), marked his first attempt in bringing Martin’s story and, by default, disabled people and the philosophy of Independent Living into the public consciousness. It’s a film that he is rightly proud of: the story of two young men who escape the confines of institutional living and use their freedom to screw up their own lives as they see fit. I remember seeing it in the cinema myself at the age of twenty-one, when I would’ve been clubbing and partying and making mistakes. I remember how grateful I felt that Christian had taken the time to consider the realities of what it was like to be disabled in Ireland.

In recent interviews, Christian has admitted that while he was (and still is) proud of Inside I’m Dancing, it wasn’t the story that he wanted to tell. A month before Martin passed away, Christian promised his friend that he would complete a dramatic telling of Martin’s story. This promise culminated into the production of No Magic Pill, a piece of theatre that has been twenty-six years in the making – and it shows. Each line of dialogue was carefully crafted, each scene beautifully woven together with the threads of human emotion. It’s also ground-breaking insofar as all the disabled characters are portrayed by up-and-coming disabled actors, and this performance truly showcases the talent of these actors.

No Magic Pill opens poignantly with the story of a young Martin being unwillingly sent to St. Mary’s in Baldoyle “as he is not getting any better.” Nine-year-old Martin is depicted on stage as a small puppet with splints. He has no say or control over the day-to-day mundanities of life: he is literally a puppet on a string. He wants to get better; he wants to walk. Like many young disabled people, his sense of value is equated with his physical abilities. As he gets older, however, he surprises himself: he sets up his own garage and he teaches the younger residents of St. Mary’s how to swim.

Filmmaker-turned-actor Paddy Slattery effortlessly embodies the spirit of the Martin we know and love. Slattery doesn’t just act; he pours his soul into the role. His ability to empathise with Martin’s character is very special. Outwardly, Martin is persuasive; he knows how to get what he wants. However, inside he is crumbling under the expectation that he will be some sort of saviour for his disabled peers. The ghost of Brendan is constantly haunting him, whispering to him about the new life he could have in America. It’s more accessible, there are more opportunities, he could live independently. But when the first Centre for Independent Living is funded for two years (by the EU Horizon Project), his peers realise that their independence could be whipped away in an instant.

Sorcha Curley embodies the spirit of the late Ursula Hegarty. She’s spent her life in an institution, and she’s not going back. She’s feisty, argumentative, but also afraid; this gamble that she’s taking – trying to live independently – needs to work out, or she risks spending the rest of her life in a home or, best case scenario, dependent on her partner Jimmy. She points out that Martin will be okay, but that the rest of them need the Personal Assistant Service to continue if they are to escape a fate of institutionalisation, with no choice of when to get up or go to bed. It becomes clear that they will have to fight for their freedom, as a united collective. Martin’s decisions are suddenly universally relevant: whatever he decides to do with his own life will inevitably affect Ursula’s, Dermot’s and, it is implied, the lives of disabled people across the country.

On stage, Paddy embodies this unfairness in a realistic and poignant way. He’s torn between his dreams of a life without inhibitions and a sense of duty to his disabled peers. To complicate matters, he’s fallen for his P.A. Josie, played beautifully by Julie Sharkey. She’s shy and lacking confidence, something Martin makes it his mission to remedy, just as the real Martin did for many of us throughout his lifetime. Josie doesn’t take any shit from Martin, and Sharkey and Slattery have an undeniable chemistry onstage that feeds seamlessly into their characters. Once again, as in Inside I’m Dancing, writer Christian explores the complexity of the PA/Leader relationship when Martin falls in love with Josie. Inappropriate as this may be, it reminds us of the importance of giving disabled people the permission to mess up and make mistakes, just like everybody else.

Unsurprisingly for those of us privileged to know him on a personal level, Peter Kearns as Dermot steals many of the laughs of the show. Because of his speech impairment, Dermot often isn’t taken seriously and his opinions are overlooked or dismissed. He relies on Martin to translate for him, a role that Martin tires of. Martin encourages him to use his PA to communicate, which lends Dermot his freedom. Peter was also the Disability Equality Dramaturg for the production, bringing his years of experience in lecturing in Disability Studies in St. Angela’s, Sligo to ensure that the entire cast had an equal and deep understanding of the history of disability and the social model.

Kearns cleverly plays on the mechanics of his own impairment when portraying Dermot. As he pointed out during a post-show discussion, one of the benefits of using disabled actors in this production is that they are free to explore and portray their characters as only these actors can; there’s no “cripping up” which means that more attention is paid to the characters and the world they inhabit. Ferdia MacAonghusa’s physical performances, particularly where he drags himself across the stage, acts as a physical reminder to us all of the uniqueness of the crippled body. It can also be seen as a call to action: disabled actors will no longer be silent while non-disabled actors assume our roles and sanitise the perceived “unsavoury” realities of our impairments.

No Magic Pill is so much more than a play about disability. It’s a play that explores the sacrifices required by those involved in activism. I found myself wondering: to what extent did Martin sacrifice his own happiness to secure a better quality of life for the better of the collective? Was he frightened? Lonely? Bitter? Martin was far from a saint, but he certainly was an aspirational human being who wanted to make the world more accessible for himself and his peers. Without him and the others who came together to establish the first Center for Independent Living, many of us would be living in institutions or in the back rooms of our parents’ houses.

No Magic Pill has set an exciting precedence for future productions about disabled characters in Ireland. Seeing the powerful performances by the disabled actors should lead producers and casting directors to question why, historically, disabled actors have not been encouraged to assume acting roles. As Selina Bonnie, Independent Living Movement Ireland’s Vice Chairperson commented, this production has proven that with thought, awareness training and innovative set design, barriers that often prevent disabled actors from availing of acting opportunities can be removed.

I am so grateful that Christian O’Reilly persevered in his mission to bring this heartwarming story into the public consciousness. It certainly gives me hope as a writer that one day I, too, will write a story that represents the reality of living as a disabled person. Thank you to Christian, to the producers and cast for bringing Martin’s spirit back to life. It was such a timely and fitting tribute to a remarkable man, activist and friend, whose sixth anniversary we remember on 13 October. I have no doubt that everyone involved in this unique and memorable production has made our old friend proud.

Hero or Villain?

Posted on August 9, 2022 by sarahfitzgerald1984

So, I just thought I would give you all a little update into how the writing is going. Well, at this exact moment in time I, like so many of you, am fit to melt into a puddle, which isn’t helping. Before this week, however, I was plodding along until once again, I found myself disappearing into a cul-de-sac. Interestingly, I know in my head where this is going – finally! – but it’s not translating to paper as well as I’d like. This is a common predicament for writers, not unique to me. After hacking away for a while, and adding words purely to beef up the word count, I decided to take a break. I gave myself permission to step away, justifying my decision with advice from writer Sam Blake (The lovely Vanessa Fox O’Loughlin) that sometimes you need to allow your subconscious the space to put elements of the story together. I’ve spent the last week or so doing just that.

A number of things have rubbed me since reading in Cork nearly a month ago. I began thinking about the advice my brilliant mentor David Butler gave me during our last session. “You’re really being too hard on Rachel,” he said, which annoyed me a bit, because I think Rachel deserves it. My protagonist can be lazy, selfish and quite frankly, a bit manipulative. She uses events of the past to justify her shitty behaviour towards those around her. Some days she annoys me so much that I want to shake her. Why doesn’t she just try a bit harder?

The funny thing is, David is absolutely right, of course. Everyone in my writing group loves Rachel and is rooting for her to overcome her demons. They think she’s feisty and assertive in all the right ways, and they seem to look forward to the next instalment, which is flattering. Rachel even got a few laughs at the West Cork Literary Festival, which was such a good feeling. My daughter didn’t go to the reading, but she read the extract in the back of the car afterwards. Her eagle-eye spotted every detail; she is an avid reader who I’m sure can memorise many of Jacqueline Wilson’s or David Walliams’ books. After she finished, my daughter asked me “Mammy, why does everyone hate Rachel?”

“Did you not hear what her boss said to her? She’s been missing appointments, coming in late and hungover. She’s not a reliable employee.”

“Yes, but she seems to care about her clients. I know she’s not perfect, but I can see where she is coming from too. People need to back off her.”

My eyes narrowed. “Hmmm. Have you been talking to David?”

After taking a break for a week, I went back and read over the story again. I could see what David and Alison were saying; I am quite hard on Rachel, and she deserves some happiness. Because Rachel and I are similar in many ways (the Cerebral Palsy, the struggle to fit in at work, and hating being called “inspirational”), I’ve been trying to detach myself from her a bit. I did a one-day course with Michéle Forbes in April on creating characters, and now I understand why all my characters act the way they do. Including my antagonist, Sister Anthony.

For years, I’ve said that I base Sister Anthony not on a person but rather an attitude that I as a disabled person have encountered all my life. That voice that tells us as disabled people that we are less than (I’ve written about internalised oppression before), that in order to be accepted, we need to change and conform. These ingrained beliefs – personified in my story through Sister Anthony – can be difficult to challenge unless we question them, where they come from, and how damaging it can be to believe them.

I know you probably don’t know what I’m on about, so let me explain. (Oh, please reader, be kind; this is so hard to write and admit to). The reality of aging with impairment is something that is seldom talked about. I was lucky to have availed of services throughout my childhood – physio-, speech- and occupational therapy. However, in Ireland, once you turn eighteen, access to these services becomes restricted, if you’re lucky enough to have access in the first place. I’ve always been lucky in accessing services, but only because I’ve pushed for them.

In recent years, I’ve experienced aches and pains beyond anything I ever had in my childhood or teenage years. I still do my physio and exercise, but my body is starting to fight back against some of the things that I used to regard as normal. For example, I used to hoover and mop on my knees, because that way I didn’t need to worry about balance and coordination. I love ironing – my mother taught me the importance of perfectly ironed clothes – but now an ironing session might warrant an hour’s rest afterwards. I’m not giving up. I’ve always been independent and that’s not going to change. But I have to admit that sometimes I worry that this decision will have unsavoury consequences.

And on Friday, I had a very upsetting moment of realisation. Upsetting to the point where I cried – a lot. Yes, I am like Rachel – stubborn, imperfect, obstinate and determined. But I have also become my own Sister Anthony. And Anthony is not a pleasant person. She’s pushy, and often extremely cruel. Her expectations of Rachel are unrealistic and the by-product of living in an ableist society, one where the medical model dictates that self-improvement and conformity are key to being accepted as an equal.

I’m glad I recognise this in myself, because it means that I can heal. I need to give myself, and Rachel, a bit of a break. Heaven knows we’ve both put up with enough to last us a lifetime, and for the first time since I started working on this story seven years ago, I’m starting to think that we both deserve a happy ending. And for Rachel, this will just be a matter of writing a couple of thousand words. Mine will only come with an acceptance of my limitations, and this will take a lot more work. But I will get there, and hopefully finish this godforsaken novel in the process.

(Not today, though. It’s far too hot!)

The Big Imposter

Posted on November 4, 2021 by sarahfitzgerald1984

Forgive me reader, for I have sinned: it has now been four months since my last blog. I was browsing through it today and decided that I need to make more of an effort to post more often. But I have been writing, I promise. In fact, I decided that I needed to give my novel another chance, after leaving it on the back-burner for the last three years while I got distracted by various projects and courses. I did the Certificate in Disability Studies in 2019 with the view of trying to get another job in the disability sector, and all I have got from that so far is further confirmation that I want to be a full-time writer. Lucrative? Not in the slightest, but I love it. I’ve been doing it for seven years now, with no-one prodding me to write. I’ve gone out of my way to prove that the statement “working on my own initiative” on my CV is true, that’s for sure. And when I look back on my writing career as a whole, I’m proud of what I’ve achieved, how many people I’ve reached and how many opportunities I’ve been given, from Independent Living Movement Ireland (ILMI) in particular (a big thank you once again).

Yet, when the opportunity came to push myself a bit further, I was reluctant. In June, ILMI joined forces with Skein Press and The Stinging Fly, offering a bursary to an emerging disabled writer. I eyed the advertisement with relish, but dismissed it initially. It wasn’t a good time: our house was being renovated and we were living twenty minutes away in Mountmellick, and we were coordinating the renovation as well as trying to keep Alison’s routine normal. The whole ordeal was so overwhelming that I had to step back from activism before I burned out. Suffice to say, it was a busy time, and when I threw the first ten pages of what I would usually term “my excuse for a novel” into the ring, the last thing I expected was to get an email two weeks later to say I’d won.

Reader, I felt euphoric. It was the middle of the July heatwave, and I brought Alison for an ice-cream so chocolatey and stodgy that we needed full showers afterwards; the pack of baby wipes didn’t cut it. I was so proud of myself. I had done it: everything I’d written since 2015 had been leading up to that moment.

But the next morning, after I had sent my “yes please and thank you for this opportunity” email to Nidhi Eipe from the Play It Forward Programme, I felt a sickness in the pit of my stomach. Why did I do that? I won’t be able for it. I’m not a real writer. No way am I good enough for something like this. Nidhi sent me a list of potential mentors from which I had to pick someone to work with. A list of established authors, with their work published, who knew what they were doing. I panicked, and drafted two emails. One was to Nidhi to say thank you but clearly there had been a mistake and I wasn’t the woman for the job. The other was to the two facilitators of a group that I’m part of called Writers Ink, and I wrote that even though I had been awarded this bursary, I wasn’t sure how I was going to maintain a pretence of being a half-decent writer and that I was terrified of making myself look like an idiot.

Thankfully, I didn’t send either email, as I would have succeeded in looking like an idiot. Instead, I stepped away from my laptop and took a breather for a few days. How was I going to shake this feeling of being a complete imposter? How was I going to overcome this feeling of sheer terror?

And then it came to me: I would have to fake it. I would have to pretend that I was a competent writer, capable of writing a novel. You see, the trouble is that I have never really taken this writing thing seriously. I’ve been told by people that there are some hidden gems in these pages, and yet I treat it like a diary, something I think no-one will read (perhaps taking the adage “write as if no-one will ever read it” a bit too far). In reality, despite how far I’ve come, I don’t feel like a “real” writer, deserving of any attention, positive or otherwise. The only thing keeping me going is coming to my laptop every day, telling myself “I can do this,” then typing as fast as I can before I change my mind, or overanalyse what my character is doing.

I’ve been allocated a terrific mentor, author and poet David Butler, who makes me smile: he loves Rachel, my character. Better still, he gets her, which I wasn’t expecting this early in our mentoring journey. He has been so encouraging on this novel-writing journey which can often feel so lonely, and now that I have more (though not full) control over my imposter syndrome, I can take his compliments as well as his suggestions for improvements and feel a sense of pride in my work.

I would like to thank ILMI, the Stinging Fly, the Play It Forward team, Skein Press and David Butler for this incredible opportunity. I won’t let you down!

…Hopefully, if I keep telling myself that, it might turn out to be true.

Home

Posted on July 26, 2021 by sarahfitzgerald1984

Home!

On this sweltering hot Thursday afternoon, I am sitting in a first-floor apartment, overlooking the beautiful Lloyd town park below. This isn’t where I normally live; our house is undergoing some serious renovation work. Every night, I close my eyes and ask myself if I was actually mad to such extensive work to our charming little four bed which was, on the whole, perfectly fine, in the middle of a pandemic, no less (The answer is yes, by the way). Uprooting our child, surrendering our little baby (puppy) Troy into the hands of capable dog-sitters – God, I miss him so much! Was it worth it? I ask myself. Was it…necessary?

The answer to this is also yes.

I’ve written before briefly about the deterioration of my physical impairment. Since then, I’ve been to physiotherapy a couple of times, and it’s really helped with the pain in my right knee. I’ve also been exercising a little more. I’ve even started eating more healthily, cutting down (though not out – let’s not lose the run of ourselves here!) on sugar and chocolate – which have been staples of my diet for as long as I can remember. (I was a picky child, and my mother reasoned that eating something was better than not eating at all). All of these changes have helped. I feel a bit better, slightly more energetic and, despite the chaos that’s unfolding in my world – not to mention the world in general – I feel more grounded and able to cope with the stress of it all.

But here’s the upshot: no matter how healthy I eat, no matter how much physio I do, my wobbly body will always be unpredictable. Twenty years ago, I could have handled those concrete stairs in this apartment block more easily: okay, I might have still had to go up on my knees and down on my bum, but it certainly wasn’t the big palaver that I find it to be now. At the moment, I only leave the apartment when it is strictly necessary, or if I am going to be out for a couple of hours (though, admittedly, this is also COVID-related). Nothing is spontaneous at the moment; a simple trip to the shop is now a case of me psyching myself up to conquer my concrete nemesis yet again.

I shouldn’t moan, however. This is only temporary. Soon I shall be returning home – to my own home. A privilege that many people in this country – including many disabled people – can only dream of. When I was twenty-three, the recession of 2008 was still a year away, and I was living in a privately rented two-storey semi-d in Portlaoise. I was managing fine until one day, while carrying some laundry upstairs, I slipped and bounced down the stairs, landing awkwardly on the concrete below. As an expert in the art of falling, I had managed to preserve my head by tucking it into my chest as I landed. That was a wake-up call for me. I would not be able to adapt to my living arrangements indefinitely, not without making some serious changes.

It’s easy for me to understand why disabled people in their twenties, thirties and even beyond are still living in the family home. Firstly, accessibility is a major factor, not to mention a serious lack of rental properties at the moment. Then, if you are lucky enough to find somewhere semi-suitable, the cost of rent can reach over a thousand euro a month, and many landlords refuse to consider tenants on rent allowance or other benefits. Also, many landlords will not allow you to make necessary adaptations to their property, even simple ones such as installing grab rails in the shower. And sure, you can apply for a council house, but the process is a full-time job while you chase (often beg) your local councillors to advocate on your behalf.

So what? I hear you ask. You may point out that there are many non-disabled people, particularly in the 20-40 age group bracket, in the same position. People with good jobs and incomes, who just can’t seem to get on the property ladder, or to find rental accommodation.

For these younger disabled people, who still live at home but yearn to move out, there are even more complex issues coming down the line. Many disabled people are considered ineligible for Personal Assistance or Home Help services, either because they have a family member to care for them, or because said family member is claiming Carer’s Allowance for them. In some cases, family members find it difficult, for various reasons, to allow the disabled person to become independent. Often, not enough hours are offered to enable a disabled person to enjoy a decent quality of life, meaning that the person would not have adequate supports to live independently of their family (In 2017, a study revealed that almost half of disabled people who receive PA services are allocated the equivalent of forty-two minutes a day). Anecdotally, it is quite difficult for someone who is be considered “high dependency” to secure the level of assistance they need, especially at times that really suit them. Unless you have a telly in the bedroom, a good old-fashioned midnight Netflix binge is out of the question, and I have heard too many stories of people being put to bed at half eight at night.

The solution to enabling disabled people to live independently must be as multifaceted as the issue itself. Even if local councils provide more accessible housing, the only way disabled people are going to truly enjoy a rich and full life is if Ireland adopts a “rights-based” approach. This means having the opportunity to engage in meaningful and lucrative employment opportunities, for example – the pandemic has demonstrated that it’s possible for those employed in a wide variety of professions to work from home if necessary. It also means granting wider access to user-led services including Personal Assistance. This means having access to support how and whenever the disabled person chooses. However, until Personal Assistance is recognised as a right, true independent living remains a pipe dream.

As for me, I can’t wait to go back to my new, accessible home. I know that I am very lucky. But having a suitable roof over your head should not be a privilege. It must be recognised as a basic human right, for every one of us.

My Journey Into Activism

Posted on April 12, 2021 by sarahfitzgerald1984

(This blog has been inspired by a group of stories which I hope will be published soon, called Conversations about Activism and Change)

It was never my life ambition to work in, or to have much to do with the disability sector. I came from a background where much of the focus was on self-improvement, on getting better, on fitting in. The closest I had experienced to disability activism as a teen was when I stayed in Clochan House with a group of seven other disabled teenagers, (including my future husband!), and we decided to keep in touch. We worked together to raise money to go away for a week to Cuisle in Co. Roscommon, which was run by the Irish Wheelchair Association. I remember feeling lazy and as if I’d let the group down because I wasn’t comfortable with the notion of raising money.

I remember one of the fundraisers entailed holding a raffle, and so I ventured out around my housing estate on my blue tricycle, knocking on doors for money. Some of these families could barely feed themselves. I remember going to one particular door. The garden was overgrown and the front step was unkempt, the paint chipped away. When I rang the doorbell an elderly lady answered, looking frightened. I think she was expecting to be mugged. She saw my money bag and the raffle tickets, and she felt sorry for me! This turned my stomach. I remember wishing that I could make a real difference, without having to blackmail others for money.

Having the privilege of availing of mainstream education had its drawbacks. I spent so much time trying to prove myself and fit in that I never gave any real thought into my identity as a disabled person. I always maintained that I wasn’t ashamed of my impairment, but yet I refused to embrace it. In secondary school, when I was exhausted from studying for my Leaving Cert, I was offered the use of a manual chair, but I turned it down. I thought that using it would mean that I was lazy and that I was somehow “less than”. Even though I realise now that some of the other students would’ve had learning disabilities, diagnosed or otherwise, I was one of three visibly impaired students in a school of seven hundred girls, and I couldn’t afford to draw more attention to myself. All I wanted to do in those days was fade into the background, pretend I didn’t exist. At times I wanted to do more than pretend and I know now, from hearing the stories of other disabled people, that I wasn’t alone in feeling isolated.

When I started my English undergrad in Trinity, my impairment didn’t seem to matter. From day one, the focus was very much centred around what could be put in place to make my life at university not only easier, but enjoyable. I was offered a laptop, a library assistant, notetakers, the use of an electric wheelchair, help with laundry and housekeeping. At first, I thought the disability service had gone overboard and that all these provisions would make me lazy, until I realised that the only thing standing between myself and a First-Class Honours was my attitude to my studies. All of the other barriers had been removed. This was my first true introduction to the social model, and it was empowering. When I completed my first year exams in Summer 2004, I decided to stay on in Dublin and I worked for Trinity’s Student Disability Service as an “access auditor”, possibly the toughest two months’ work I’ve ever done. Undertaking the audit taught me to approach inclusion from a cross-impairment perspective and to think of creative ways to remove the barriers to full access. Later, in 2011, when a pathway was constructed through the infamous cobbles in Front Square, I saw that even the seemingly immovable barriers could, in fact, be removed.

I learned so much living in Dublin for those four years, and most of it had nothing to do with English Literature. By the end of my second year, I was hungry for another summer living in Dublin. My Personal Assistant at the time tried to get me a job with PWDI [People with Disabilities in Ireland], but that didn’t work out. Trinity did not have the funding to take me back on that summer (although they took me back on for the following summer break, the summer of 2006). I started to panic. Trawling the small ads in College was unfruitful, and although I did secure some work as a freelance audio transcriber, it wasn’t enough to pay the bills. It was then that my PA came across a man called Martin Naughton, who said that he might have a job for me. I found this very weird. How could a man, who didn’t know the first thing about me, have a job for me?

Intrigued, I donned the cheap Dunnes Stores suit that I kept for job interviews and went with my PA to Chief O’Neill’s in Smithfield in Dublin. I remember waiting in the main seating area when a man in a red hat and red jumper whizzed into the room in his wheelchair. I remember feeling nervous and incredulous all at once. I’d never met a disabled person before that had that aura of self-importance, that sense of self—worth before. He was confident and unapologetic, and after five minutes of meeting him, I found myself wanting to be more like him. Little did I know that day that I was chit-chatting to one of the main founders of the Irish Independent Living Movement.

After bullshitting my way through the interview, which was more a rambling conversation about the definition and purpose of the ILM, I was told that I was the Dublin Leader Forum Coordinator and that I had to set up the Forum as per a working document written by Eugene Callan, who transpired to be nothing short of an absolute gentleman. I was offered the job much to my relief – the finances relied solely on it! – but at the baby-faced age of twenty-one, I hadn’t the foggiest idea what I was doing. And when I went to google Martin Naughton, it kept drawing blanks. I would soon learn about this great man and how his actions, alongside other activists, had such a profound direct impact on my life. Through working with Martin, I also had the opportunity to meet other people including Donal Toolan (from Inside I’m Dancing), Eileen Daly, Rosaleen McDonagh and Hubert McCormack. But these people were like no other disabled people I’d ever met before. They were talking about rights and taking back control from service providers and just fighting to live their best lives. I had never heard disabled people speak like this before. I just assumed it was a given that we had to fight for things and that we had to conform in some way. That summer changed my entire life, though I didn’t know it at the time.

In 2007 I graduated from Trinity with that all-useful English undergraduate degree and found myself pondering on what to do next. I did an interview for an internship with HP in Leixlip and I also wrote to Offaly CIL offering my services as a Creative Writing tutor. I got offered both jobs, but I turned down the Leixlip job, because it wasn’t worth the wages minus the rent in Leixlip at the time – the height of the Celtic Tiger. I still regret this; it may have altered my career path. A couple of months later, I was offered a FAS scheme as a “researcher” for OCIL. I was doomed from the outset. Having worked with Martin, I knew what independent living was supposed to look like but, being funded by the HSE, we had to be careful about projecting the conflicting messages of independence and restricted freedom. Furthermore, by September 2008, the threats of cutbacks to services started to become real, and I was reluctant to preach a message that could result in me losing my job. I constantly felt an inner conflict between wanting to keep my job and keeping true to the Philosophy. It was a miserable time that adversely affected my mental health. I went from being an occasional smoker to smoking heavily for two years. I lost interest in reading and writing. I even found myself sucked back into the throes of a dormant eating disorder. The most frustrating part of it was that I was passionate about Independent Living, about rights and equality for disabled people, but yet it felt like Independent Living was succumbing to the medical model. Often, I would go into work and spend the five hours scrolling through the internet. I would smile as I read about Ed Roberts and Judy Heumann and the emergence of a worldwide movement. But it felt like something that was “out there,” that I was not part of. And I yearned to be part of something exciting, something to be proud of.

In 2011, I decided that it was time to be brave and give my career a facelift. I was starting to feel like a liability in OCIL and I didn’t feel comfortable continuing as the tokenistic cripple in the office, so I contacted Declan Treanor in Trinity, who said he might have a job for me. I also started writing again in earnest and after a few months, set up my own blog – a Blogspot one – and starting sharing random scribbles and thoughts, which were surprisingly well received. Seasoned blogger Suzy Byrne even asked me to do a guest blog for her highly popular Maman Poulet, which was widely read and well received – an honour so early in my writing career. Declan asked me to interview the Provost of Trinity prior to his departure, in the hopes of pitching the article to the Irish Times. Things were starting to look up when, damn! – my brain stopped working for no apparent reason. Why was I so tired? I put it down to the extra work I was doing, on top of the job with OCIL, but I told myself I had to push back against the tiredness, that I’d have to get used to it. I was eating healthily, lots of exercise, going to bed early, but was still so drained.

On 18^th June 2011, John Paul said to me, “Your last period was the second week of May, wasn’t it?”

Oh I’m hardly pregnant, I thought. I’m just drained from all the extra work I’m doing.

On 20^th June, I did a pregnancy test. To my surprise (and I won’t lie, a fright also), it was positive. Of course, this changed everything, but little did I know it – she – would be the best thing to happen to me. Because of the pregnancy, my brain continued to jellify over the coming weeks, and soon I had to abandon my plans of impressing Declan Treanor with my words. My focus was now preparing to welcome our child into the world, which involved countless meetings with public health nurses, physios and OTs. Pregnancy was such a magical but draining experience. I was so tired all the time and I secretly wondered how I was going to muster up the energy to look after a small baby. I continued to work until a month before Alison was born. I was never going to win any “Employee of the Year” awards, but I managed to keep punching in time until the first week in January. I couldn’t really afford not to.

So, I have always been quite vocal about the challenges we faced as disabled parents when Alison was born. I feel that if my story can be used as an example of how new parents with disabilities shouldn’t be treated, then my story serves its purpose. The experience really shook me because I had lulled myself into a false sense of security. I thought I’d done the sensible thing by reaching out to the “professionals” for help before my daughter was born. Once Alison was in my arms, the attitude quickly shifted and I confess, I was not strong enough to argue back like I once might have done. I found myself compromising instead of fighting my corner out of fear that if I didn’t, I would be bringing home an empty carseat from Mullingar Hospital. I initiated breastfeeding even though I had never intended on feeding her myself. I was willing to do anything to be able to bring this little baby home. As a result, after being told I would be a danger to my own baby, JP and I reluctantly agreed to have the Public Health Nurse visit on an almost daily basis. These “visits” lasted around six months, to the time I went back to work with OCIL. JP was understandably quite angry about the whole thing, but I was petrified. I wanted to just keep my head down and behave myself and not draw any attention to myself. Alison was about three months old when I realised I had PND. It is only this year that I finally sought professional help for this, and although it is hard, I do feel that I am healing at last.

After six months I went back to work and I enjoyed it for a while, until I became frustrated once again by the movement away from the true philosophy of IL. I really thought I was going mad and at every staff meeting I was getting myself into trouble by saying things like “care plans have nothing to do with the philosophy.” Coupled with the PND, I could barely get myself out of bed in the morning. I dreaded work, but couldn’t see a way out. Again, I was torn between my passion for equal rights and my need for a job. I was the PRO, but how could I send out a message about the philosophy of independent living that, because of the medicalisation of services, wasn’t being put into practice? I must say at this stage that OCIL were great employers. It wasn’t their fault, they were working in the face of constant threats of cutbacks, which was very stressful.

In September 2012, a group of disability activists staged a three-day “action” outside Leinster House in retaliation to proposed cutbacks to disability services. Had these cutbacks gone ahead, I would’ve lost my job and PA service at the same time, which in turn would have subjected me to further scrutiny about my parenting abilities from the HSE. Luckily for many leaders like myself across the country, Health Minister James Reilly was forced to back down and reverse the proposed cutbacks. But of course, this was not the end of our woes, and to this day I still hear stories of hours being reduced to allow a disabled person the bare minimum to get up out of bed in the morning and go back to it in the early evening. What kind of life is that for anyone?

The 2012 protests awakened a sense of radicalism in me, and I began to question my own beliefs. Did I truly believe in equality for all disabled people, or only for some of us? Was everybody truly capable of Independent Living? I decided that if I didn’t truly believe that everyone- regardless of the nature or severity of their impairment – were entitled to live as they wished with the support that they needed, that I was not as progressive as I imagined myself to be. I realised that in order to be an activist, I needed to unpack my own internalised oppression, which I think will be a lifetime journey for me. I needed to trust in myself and my own worth, and I needed to be open to learning afresh what independent living meant – for everyone.

In 2014, depression took over and paralysed me. When you’re drowning and gulping in deep water, you can feel yourself sinking; you can feel the gravity sucking you down, but you can’t shout for help – at least, that’s how I felt. In July 2014, I wasn’t sleeping at all between Alison having the normal childhood illnesses like chicken pox, and feeling completely restless and depressed at once. The accumulation of depression and sleepless nights led to an incident where I attempted to take my own life. It remains the most frightening moment of my entire life. I remember abandoning the plan at 6am that morning and going to bed, only to get back up with Alison at 7.30am to get her ready for the childminder and me for work. That’s the lowest I’ve ever been, and touch wood things have never been so bad since.

That day, my colleagues took me aside and told me that they thought it best if I took time off work to sort myself out. I think they had said the words that I’d been so desperate to hear. I just needed a break, a bit of headspace, and to learn how to be kinder to that sad-looking lady who stared back at me from the mirror every morning.

Within a week, I’d decided that I needed to step back from independent living for a while and focus on forging a writing career of sorts. I signed up for a journalism course with Kilroy’s College and was surprised to learn how much I’d missed writing. I decided that I needed to make writing a priority for my mental health. It felt like writing was the only thing that would make me feel like myself again. But in one of the lessons, the instruction was to write about what I knew. What did I know the most about? – Independent Living. I started writing about independent living in a way I’d never felt comfortable doing before. In my blogs, which I would say are entirely my own views and opinions and do not necessarily represent the views of any organisation or people, I questioned the status quo of how services were funded and provided to disabled people in Ireland, and how, since the recession, disabled people had lost so much control over every aspect of their lives.

I had always felt so alone in my frustrations, so it was a huge surprise to see that when I started sharing the blogs, people were agreeing with what I had to say about the realities facing me as a disabled person in Ireland. I started writing about myself, but in no time at all, “I” became “we” and I had the support of a like-minded community I didn’t even know existed. The blogs started to be widely shared and discussed -my humble words that I wrote in the secrecy of my office, enveloped safely in my oversized bathrobe – were being read by activists and allies across the globe. It’s quite humbling and also frightening because I keep forgetting that it’s a global platform – more often than not, I treat it like my own personal diary, which I probably should stop doing… after this post, of course.

A year of blogging, writing novels and articles, and doing a Creative Writing course flew by, and my confidence was growing. I was moving away from Independent Living, and I missed it, but still felt conflicted. Then, just as I had given up hope of contributing anything valuable to the Irish disability movement, my friend and mentor- the guy who had taken a chance on me in 2005 – the great Martin Naughton, passed away in October 2016. I didn’t expect to feel so upset and lost. Nor did I expect to be given an opportunity to show him how much he had meant to me. A week after the funeral, Susan O’Brien from Carmichael House contacted me and asked would I like to get involved in organising an event to commemorate Martin and other activists. I jumped at the chance.

A group of us met in Carmichael House in Dublin to discuss what form this event would take. There, I met the great John Doyle who I’ve written about before, and Ann Marie Flanagan, Dermot Hayes and Shelly Gaynor, who I now regard as one of my closest friends. From day one I felt accepted, although I’d never met any of them before. They were talking about rights and they were so energetic and ambitious, and I yearned to be a part of that. I offered to set up a blog promoting the event and to be trusted to do that was the highest honour. I also offered a piece of drama which my peers encouraged me to perform at the event in the Mansion House in September 2017. These people were pushing me far beyond my comfort zone in every way, and I loved it.

The event became a catalyst for the regrouping of the Independent Living Movement. To my absolute glee, I found that there were people like me who wanted to bring back passion and excitement to the movement. Hearing the stories of more seasoned activists ignited a hunger in me. I was warmly welcomed by my peers and I felt a real sense of community that I never felt before. I felt like I belong. In April 2018 I was co-opted to the Board of what became a new, vibrant organisation – Independent Living Movement Ireland. Had I not found my own writing voice, I might never have been offered that opportunity. I need to stop underestimating the power of this humble little blog!

It’s been a busy time, and over a short period ILMI has progressed from being an organisation that only a few people had heard of, to being one of the main promoters of disability rights in Ireland. During the pandemic, ILMI has actively facilitated the growth of the modern-day Independent Living Movement via Zoom, ensuring that even in these difficult circumstances, the voices of disabled people are heard. Over the last three years, I’ve been afforded the opportunity to write a short dramatic monologue, several articles and blogs, and even to compile a collection of twelve activists’ personal journeys. ILMI have been very good to me, and I am thankful to them for that.

Going forward, I hope to do more writing. Life is too short to regret the words not written. Of course disability is not everything, and I want to write about other things, and I have a few projects and stories in the pipeline that I hope will come to fruition, but I’m not ashamed to be a disability blogger. At least people can take or leave it, and I’m not going around the neighbourhood looking for stray coppers. I want to play a part in making improvements – wider societal improvements that’ll benefit us all – that will lend us a sense of equality and belonging.

Wobbly Yummy Mummy

Parenting, Disability Activism and everything in between!

Category Archives: Disability