Tag Archives: independence

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.

A Wheely Wise Decision

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(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.

Riding on my bike

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‘Hello?’

‘Hello, I was just wondering if…’

‘Sarah, your trike isn’t ready yet. We’re still working on it. We’ll call you, promise.’

I felt unreasonable for ringing for the third time this week about a tricycle that up until a week ago, was slowly rusting in my shed. Alison has started cycling in the evenings, and watching her has stirred a hunger in me. Lately, I’ve been feeling a bit rubbish in myself. and I asked myself what made me feel better when I was younger. And the answer was a good, long cycle. It was a time when I was independent, not reliant on others. Free.

I could be getting my dates wrong, so forgive me, but I think it was Christmas 1992 that Santa got me the two things I’d asked for: Matilda by Roald Dahl and a bike. It was a lovely bike, red and white with black stabilisers and a carrier on the back. I couldn’t wait to try it. After the initial excitement of Christmas was over, we brought it down the conservatory steps and I hopped on. I hadn’t cycled six feet when I fell off. Undeterred, I tried again. And again. And again. It wasn’t working.

‘I don’t understand,’ I moaned. ‘It has stabilisers. Why do I keep falling off?’ Truth be known, I think my parents were disappointed as well. We had overcome so many obstacles and barriers and here was one that seemed insurmountable. Perhaps riding a bike was beyond possible for me.

The following summer I was sent for my annual ‘holiday’ in Clochan House. It was as much a break for my parents as it was for me, and it was a thinly disguised regime of physio, occupational and speech therapy. It was also a chance to make friends and have a bit of a laugh without having to answer ten million awkward questions about my disability. That was the week that Dorothy Oakley, possibly the best physio that ever lived, introduced me to the secret lives of the tricycle users.

‘Want to try one?’ she asked with a twinkle in her eye.  Half an hour later, she was panting trying to keep up with me in the hospital car park, ‘Slow down, I can’t keep up!’ I was in love. I knew that, from that moment on, my life would be very different.

Fast forward six months to Boxing Day. ‘Just got a phone call off Santa,’ my dad announced that morning. ‘There’s been a mix-up with one of your presents. The silly sod left it in Cummins’ shed!’

Bewildered, we wandered across the road where my neighbours opened their shed to reveal a red tricycle! Even then I was smart enough to know this wasn’t the work of Santa but rather of my parents pushing the Health board for months beforehand. Up to that point it was the happiest day of my life. Despite the fact that it was freezing outside, I spent the remainder of the Christmas holidays cycling around our patio, imagining I was in the Tour de France. I used it as a ‘taxi’ for my little sisters, who hopped on the bar above the back wheels and held onto the back of my seat. When I started school in the Sacred Heart, I insisted on cycling to school, hanging the bag on the back. I think my parents drove me to school a total of six times in as many years; I even cycled in snow, such was how precious the independence was to me.

By the time I’d finished second year in 1999, my knees were jutting out over the handlebars, but there was no way I was surrendering my independence. I became wary when my dad started to refer to it as a ‘skittery aul’ bike’ but what was the alternative? There was no way I was going to allow Mum and Dad to drop me to school. One July evening, my dad and Uncle Charlie arrived home in a van. It was 10.30 and the sun was rapidly melting in the sky.

Dad called me. ‘Come out here please.’

I was trying to think of what I’d done wrong when the sight of the most beautiful contraption knocked the breath out of me. It was a majestic navy tricycle, with gears and a basket twice the size of the wire ones in supermarkets. I was in love, however, when I cycled it down the road, I was petrified. It was too big, too fast, and I was sure it would be the cause of my untimely demise.

‘I’ll stick with the red one’ I said, nursing the poppy bruise on my shin.

Needless to say, I did not stick with the red one, and why would I? I could carry my sisters in the basket (Or I did until one of the neighbourhood lads asked to be carried in the basket  and buckled the wheel). It took me exactly four minutes to get from our house in Whitehall to the Sacred Heart, which meant that I was often still eating at half eight. I did my Christmas shopping every year on my trike. I hung around Whitehall for hours talking, delighted to have the energy to do so. It soon became my trademark, which beats being a poor, defenceless little cripple.

Unfortunately, when I was in second year in college the tricycle got stolen from our house in Tullamore, and despite gardai reports and appeals on the radio, it was never recovered. I still mourn its loss, but it wasn’t suitable to bring to Dublin. Once I moved back to the Midlands, however, I began to miss it. I moved to Portlaoise in 2007, and ended up staying at home most of the time. I had an old wheelchair but I still missed the trike.

Then a miracle happened, at just the right time: in 2009, a month after mum passed away, I was granted funding for a new trike. This couldn’t have happened at a better time; I had started moping around and hiding away. I started cycling to do our shopping, started spending afternoons in the library, cycling around the park. Our tenure in Portlaoise came to an abrupt end after I was followed home from Caffe Latte in Lyster Square to our house on Harpurs’ Lane in March 2010. This guy, I later found out, was highly dangerous. As I fled from him that day, I glanced at my speedometer – I was cycling at 16mph, and he still caught me. I would’ve had no chance in a wheelchair, I don’t  think.

My trike was instrumental in organising our wedding, collecting bits and bobs – I even brought my wedding dress to be dry-cleaned afterwards on it. It kept me fit until I got pregnant, and sadly after that I struggled to find the energy to get back cycling, until now.

I’m hoping that cycling will improve my physical and mental health, but I’m also looking forward to reclaiming something that makes me ‘me’. I’m looking forward to cycling with Ali and showing her that there’s always more than one way of doing things, if you’re willing to think outside the box.

Round my Hometown

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I was born and reared in the Midlands town of Tullamore for nineteen years.

Between the ages of nineteen and twenty-five, I decided to spread my wings and I moved to Dublin while studying in Trinity. I loved Dublin and living independently, and I think my favourite part was being able to get around so easily, whether it was in my electric wheelchair or using public transport (buses and Luases, I mean. The DART is notoriously dangerous and unreliable for people who use wheelchairs or have mobility difficulties). The Luas in particular became my lifeline when I was living out in Rathmines, and I used to use it coming into work in Trinity during the summer. When somewhere is easy to access and get around, it really adds to your quality of life. At one point, I was both working and studying. It was great.

Although I loved Dublin, I knew that I couldn’t afford to stay there after I graduated. So I moved to Mullingar, then Portlaoise before finally choosing to stay in Tullamore. It was great to be in a place that I felt I belonged in and that I thought I could get around easily and independently. And to be fair, I could – until I started using a wheelchair. Suddenly, certain areas of Tullamore didn’t seem so welcoming to me any more.

I’ve always believed that disability is defined by the obstacles that are created by society rather than one’s individual impairment, and I believe that reasonable accommodations such as ramps, clear signage, wide step-free doors and loud signals at pedestrian crossings can go a long way in ensuring our town is accessible to all who use it. In 2014, the Offaly Leader Forum (now the Laois/Offaly Leader Forum), which is a group of people with varied disabilities – physical and sensory – organised and conducted a full-scale accessibility review of Tullamore, the first of its kind in ten years. As people with disabilities, we were the experts in identifying barriers to access in town. The group took the undertaking seriously, taking photographs and compiling reports, and subsequently these reports were compiled into a hundred-and-one paged document, an impressive achievement by any standards. We then presented it to town councillors in Tullamore Town Library (which is accessible, according to our audit) and urged them to see Tullamore through our eyes.

Since making our presentation, the Laois/Offaly Leader Forum has established good working relationships with our town councillors, who we have met with several times to voice our concerns. Through doing this, we are now working together, and we have urged the council to consult us whenever they make changes in the town. And recently we discovered that our annoying persistence is starting to pay off.

Little changes and repairs are taking place all over town, but for me the most significant of these is  the ramps that have now been installed on the top of Main Street and at the Srah Roundabout. I live in Glendaniel, which is ten minutes’ walk from the Town Park, Lidl and Alison’s primary school, Scoil Mhuire, and the installation of these ramps means that I no longer have to proceed beside the footpath on the road onto traffic coming off the roundabout. It’s safer for me, my child and for the poor drivers who I’m sure don’t want to dent their cars on my wheelchair…! And the best part of the repairs is the knowledge that as a group, the Laois/Offaly Leader Forum, were taken seriously and listened to. But then again, we were dealing with people we knew for years, and people who have always supported the Laois/Offaly Leader Forum, for example Eddie Fitzpatrick and Declan Harvey (among many others, of course). Isn’t that the most important thing: being able to truly be an equal part of your community?

Now, more than ever, I’m looking forward to raising our child in a town that means so much to me. The town where I went to school, and developed a passion for writing. The town where I got my first summer job in the Tullamore Tribune, as well as my first ‘real job’ in the Offaly Centre for Independent Living Ltd. The town where my neighbour, who used to live eight doors down us, remains my best friend.

I have to admit, Tullamore always was a pretty great place to live, but with these little changes to our town, it can become a great place for everybody to live independently.