Tag Archives: identity

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.

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.