Monthly Archives: June 2023

The Important Conversations – Tuesday Thoughts 4

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(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:

Summer in Dublin – Tuesday Thoughts 3

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(I can hear some people humming Bagtelle from here!)

I have always loved my independence. So much so, that when I went to Trinity in 2003, I made a decision to try and become self-sufficient. With two little sisters coming up behind me, I just didn’t think it was fair to go home for the summer after a year in uni and scrounge off my parents. Besides who, at the age of nineteen, wants to go back to telling their parents their every move after enjoying so much freedom during the academic year? I certainly didn’t.

Before I sat my first year exams, I gathered up the courage to ask the Trinity Student Disability Service for some ideas. To be honest, I thought they’d tell me that it wasn’t in their remit, but they seemed impressed by my determination to be truly independent, and offered me a job as Access Auditor for the summer of 2004. The Trinity Accommodation office also offered me a room out in Rathmines, within their complex on the Dartry Road. I’d never been there before. Most of the time, whenever I returned to Tullamore by train for the weekend, I would be escorted to Heuston by my lovely Personal Assistant Mary, collected from right outside my rooms in her little black Polo. Suddenly, I had to navigate Luases and buses to get from Rathmines into work in Trinity.

Working as an Access Auditor was bloody exhausting. My friend Ciara and I worked together on it, and we got a one-day crash course on what we were expected to do. And man, it was detailed. How heavy were the doors? What height were the doorhandles? Were there any plug sockets, Braille, loop systems? What were our recommendations? The level of detail expected was extraordinary, and yet it only took us a month to go around to all the different faculties in Trinity trying to gather the information. That said, we were working seven-hour days, which was quite the culture shock to an English Studies student who was only expected to attend twelve one-hour lectures/tutorials a week! It gave me the kick up the arse I needed to motivate myself to study harder in the subsequent years. Indeed, my university experience is part of the reason why I can now work consistently and independently.

I liked living in Rathmines, though. It isn’t quite a town, nor does it feel like part of the city. I remember how God-awful the footpaths were going from Trinity Halls down to Tesco. The 14A, which stopped directly outside Trinity Hall, used to bring me to work into the city every morning, but it wasn’t always reliable timewise (surprise!), nor was it wheelchair accessible, which meant I had to walk – thankfully, only a short distance (I didn’t even need a rollator in those days). I’d always aim to be at the bus stop for the 9.05, and it almost invariably drove off while I was on the other side of the road, trying to cross in the height of rush-hour traffic. Thankfully, by the time I lived out there in the summer of 2006, I had an electric wheelchair, meaning that I could whizz to the Milltown Luas Stop, then fly from the St Stephen’s Green stop down to Trinity, where I was employed again for the summer, this time uploading the results of the 2004 Access Audit up onto the Disability Services website.

Trinity is different in the summer than during the academic year. During term time, you’re always bound to bump into people you know, but the majority of my friends usually went home, or travelling, for the summer. The lines of excited Americans waiting to see the Book of Kells grows threefold in the summer months.  But even with the sudden influx of tourists, I always thought it was a beautiful place. When I was living in Botany Bay, which is located right in the heart of the campus, circling the tennis court, I awakened every morning to the poc-poc-poc of tennis balls. We were privileged to have a cleaning lady working in our block, who helped me to keep on top of the housework and to help with laundry (unless both exits of the Buttery Restaurant were open, the laundry facilities were not wheelchair accessible.) I was quite embarrassed by this offer of help (who wants the cleaning lady looking at their undies?!) but after nearly falling down the steps with a sack full of laundry, I had to concede that I needed the assistance.

Walking through the campus on a sultry summer’s evening is an experience that will always remain ingrained in my memory. I’d head out through New Square across to the rugby pitch, walking slowly as I watched people picnicking on the green in spite of the “Keep off the grass” signs, people congregating around the campus pub, affectionately known as the Pav (which, with its humungous flight of steps, was not accessible in my time) with plastic glasses in their hands. Around eight o’clock, the drone of the city surrounding us would subdue to a gentle hum, while the midges appeared and the orange sun hung low beneath the campanile in Front Square. Even then, I’d a sense that I wouldn’t appreciate those days the way I do now.

Sundays was treat day, and John Paul and I would walk around Saint Stephen’s Green park, stopping in Lemon on Dawson St for breakfast and having dinner in Café en Seine on the way back to Trinity, or the Luas to Rathmines. Poet extraordinaire, Professor Brendan Kennelly, often had brunch in Lemon on Sunday mornings, and he would always come over to us with a wide smile, a warm handshake and a “It’s so great to see you.” Looking back now, I thought it was the most normal thing in the world but now, I can’t believe I took any of it for granted. Now that Professor Kennelly has passed away, I’m so glad to have those memories.

However, one particular summer changed my life: the summer of 2005. Trinity couldn’t afford to take me on for work, and so my Personal Assistant introduced me to the Father of the Irish Independent Living Movement: Mr. Martin Naughton. I met him in Chief O’Neill’s in Smithfield, as many others had on separate occasions before. He gave me a summer job, and before I knew it, I was in the gatehouse of Carmichael House meeting other disabled activists, including Donal Toolan and Hubert McCormack (sadly all three men have left this world, RIP). That summer, I learned that it was okay to ask for help, and that being independent did not mean that I had to be self-sufficient. I also learned how to use the Luas, which was only in existence for a year at that stage. I remember telling Mum about it, and her shrieking down the phone at me: “Stay away from the Luas – you’ll be killed!” (In the early days of the Luas, there were lots of near-misses/accidents). Deliberately disregarding her instructions, I caught the Luas from Abbey Street twice a week and disembarked in Smithfield, which back in 2005, was quite a rough area. In saying that, I was never attacked or harassed, and the dishevelled men would raise their cans to me as I walked past on those sunny July mornings. That summer, I forged what has so far transpired to be a lifelong bond with the Independent Living Movement.

Those days of wandering around, coming and going as I pleased, now feel as though they happened to someone else. Just thinking about the amount of work I did during those summers make me feel sleepy. But I’m grateful for what I learned: how to budget, how to find work, how to look after myself. I bring these lessons into my life every day. It just doesn’t feel as exciting anymore.

And Dublin is different to me now that I have a child of my own. Once, the city was a treasure trove to be explored; now, I can smell the stagnant River Liffey, see the throngs of people walking on autopilot down O’Connell Street. I can see the destruction of addiction, the potential to be targeted by thieves, the dangers. But looking at the past through rose-coloured glasses, I see adventure, hope, promise. And I’m thankful for my Living in Dublin adventure, which prepared me for living in the real world.

The Lost Years – Tuesday Thoughts 2

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Two weeks ago, my husband and my daughter sat me down. They’d obviously been discussing something before approaching Big Bad Mummy (yes, I’m the bad guy in this house, which is always great fun). At first, I thought there was something wrong, but then Alison turned around and said the words I’d been expecting to hear for a while:

“Mum, I want to start walking to school. Not every day, but maybe two days a week…?”

“No way,” I snapped, with no hesitation whatsoever. “Are you mad? Too dangerous. You’re far too young.” And la-la-la, etc, etc, ad nauseum. My husband looked at me in surprise.

“Hon, it’s around the corner,” he reasoned. “Plus, she is eleven. She will be walking in secondary school, which is only a year away.” (That also stung hard. My baby is slipping away!) “We need to let her do it, learn how to take responsibility.”

I didn’t want to hear it. I flew into a silent rage and went to bed early, simmering because I hadn’t gotten my own way. But then I went on Google (of course) and was shocked to discover that it’s normal for kids as young as eight to walk as far, if not further, than our daughter was proposing to walk to school. And as I lay in bed, annoyed that Google had not taken my side, I realised that deep down, I don’t see Alison as an autonomous eleven-year-old preteen. (Well, sometimes I do. The mood swings don’t leave me much choice).

I admit that I’ve always been an overprotective parent, which is a direct product of the crippling anxiety that I’ve suffered from for as long as I can remember. Lately, however, while pondering how to allow my preteen some well-earned independence and keeping her safe at the same time, I wonder whether the pandemic affected the natural evolution of Alison’s independence. Is that why this sudden thirst for independence is such a shock to me – because of the lost time during lockdowns?

In the grand scheme of my own life, the three lockdowns we had in Ireland – from March 2020 to May 2020, from October to December 2020, and January to March of 2021 – don’t really matter. I was working from home anyway, I had a project to focus on (the compilation of Conversations about Activism and Change: Independent Living Movement Ireland and Thirty Years of Disability Rights), and I was involved in so many different organisations and advocacy groups that I often had two or three Zoom meetings a day. I soon got used to talking to friends over Zoom and Google Meets, even if I missed the intimacy of having dinner or a coffee together. All of this is now a distant memory, since we’ve supposedly returned to normal.

COVID has been around for approximately 1/13th of my life. But in Alison’s case, it has dogged nearly a quarter of hers. COVID struck the year of her Communion, meaning that the occasion was postponed and the party that we had planned, complete with in-house entertainment and seventy guests, was scaled back to a family dinner in the Tullamore Court Hotel (that said, Alison has about sixty people in her extended family alone, including aunts, uncles and cousins). Even when schools reopened in 2020, things were not the same: she still had to social distance, she could only socialise outside in the cold, and she had one friend who was allowed in our house, as part of her “bubble”. 

It seems like a lot to deal with, and I assumed she was pretty angry about it all. On Saturday night, when I was tucking her into bed, I asked her how she felt about the last three years.

“You must feel like you missed out on a lot.  Like your friends.”

“Yes,” she admitted. “For the first month or two, things were pretty hard, and I did find it lonely on my own. But it wasn’t all bad. You really pushed the schoolwork.” She laughed. “Honestly, I think I did more work in those six months than I have in the whole of primary school. And I enjoyed the challenge.”

“So, are you saying that you didn’t mind lockdown?”

She laughed. “I never want to do it again, let’s get that straight. But,” she paused, “we did lots of things that we just don’t get time to do now – the art, the baking, building forts, the movie nights.”

“And you don’t feel annoyed about any of that? About the things you missed?”

“Nah,” she shrugged. “We spent time as a family, even if we did kill each other sometimes. What’s the point in being annoyed, when life is much better now?”

I went to bed on Saturday night, pondering on how her unexpected answers were going to change the trajectory of this blog. And instead of dwelling on the psychological damage she’s supposedly suffered over the last three years, I thought about the things that Covid has given her. Alison is a prolific reader, having read everything she could set her hands on during the course of the pandemic. Once I manage to wangle her Switch from her, she loves writing her own stories, going for walks and playing football and camogie on the green. Occasionally, she’ll complain that she’s bored, but I think that has more to do with the age she’s at (eleven – not quite a child, not yet a teenager). Over the next few years, she’s going to face some of her toughest challenges – fitting in, discovering who she is, dating, and growing up in a world obsessed with social media.

But I wonder now if the whole Covid experience had lasting advantages as well. Alison has become an expert at dealing with disappointment, with making do with the circumstances facing her. She’s had Covid four times: one bout resulted in her missing a gymnastics competition, and she came down with it before Christmas 2022, causing her to miss her class Christmas party. Both times, there were tears for about ten minutes, then she dusted herself down and focused on getting herself better. She isolated on her own, not wanting us her parents to be sick too, and just sat it out. Reader, could you have endured that isolation, at the age of ten? Even with all the TV, books and Nintendo Switches in the world, I know for sure that I couldn’t have.

And maybe – probably – I’m making something out of nothing, as per usual. Perhaps, I’m just using Covid to deflect from my sadness that my little baby is growing up. And truth be known, even if time slowed to a snail’s pace, I was never going to be ready for it.

Should I Be Fixed? – Tuesday Thoughts 1

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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.