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Should I Be Fixed? – Tuesday Thoughts 1
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
(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.
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
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
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?
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 Play It Forward Experience
It was Friday, 16 July 2021. We were temporarily residing in a first-floor apartment in Tullamore while waiting for some much-needed renovations to be completed in our house. I remember that it was the middle of the heatwave, because I was watching Alison, our daughter, playing outside from the apartment window. Suddenly, my phone rang. I saw Damien Walshe’s name, the CEO of Independent Living Movement Ireland, flashing on the screen. My mind was cast back to the occasions where I’d applied for jobs with ILMI and he had the unenviable duty of ringing me, telling me that I hadn’t been successful.
So when I answered, and Damien asked, “Can you talk?” I’d already played out the spiel in my head: Don’t lose hope. Keep writing. You are good at what you do. In fact, I was so busy steeling myself against disappointment that I almost missed what he was actually saying to me.
“Did you just say that I’ve been chosen?”
“Yes! Well done, Sarah!”
I was flabbergasted. “Are you sure it’s not a mistake?”
This went on for quite some time, much to Damien’s exasperation I’m sure, but later that evening, an email from the gorgeous Nidhi confirmed the good news: I was an official Play It Forward fellow. More significantly in my head, I was a writer who had been awarded a bursary, a real bursary.
I’m sure many artists who apply for bursaries feel the same way I do. It wasn’t about financial gain for me (although I’ve never been known to refuse a few quid). Writers, like other artists, don’t pursue this kind of work because they have visions of rolling around in mountains of cash like J.K. Rowling. In terms of money, I don’t earn enough to keep food on the table or to afford anything remotely luxurious. Most people write alongside their day jobs.
What being awarded a place on the inaugural “Play It Forward” programme did for me was it validated what I do on a daily basis. I’ve always been reluctant to use the word “writer” to describe myself. It feels a bit arrogant to be putting myself in the same category as the likes of Marian Keyes and Margaret Atwood. Yet, when I was awarded the place on the programme, suddenly I felt that I had permission to identify as a writer.
It was strange, because in reality, my creative process has remained largely the same. I still endeavour to spend three to four hours at my laptop a day, churning out words, as I have done for the last seven years. The difference was now there was accountability. Suddenly there was no time to sit around daydreaming, because my mentor David Butler would be expecting to see approximately ten thousand words of my novel every couple of months. This forced me to pay closer attention to the words I put on the page, meaning that I have to produce the best quality work I can. Being on the Programme allowed me to write a small piece for the prestigious literary magazine, The Stinging Fly. It also enabled me to avail of a number of one-day online courses, as well as two longer ones: “Novel Writing” facilitated by David Butler and “The Confidence Booster” by Anne Tannam. I learned so much on these courses, and in fact we all enjoyed the Novel Writing one so much that when David’s teaching ended, we all came together and so the group continues to meet to discuss and critique each other’s work every two weeks under our new name “People’s Republic of Writing.”
Perhaps the most significant part of being a Play It Forward fellow was having the opportunity to read our works-in-progress at the West Cork Literary Festival. I remember when I was sent an overview of the programme last July and saw that we would be reading to a real-life audience, my first thought was “Okay Sarah, you have a year to try and think of an excuse to get out of this.” I’d never been to the Festival, but I’ve followed it on social media since I first started writing and thought of it as somewhere for established writers. Real writers. You know, writers who actually know what they’re doing. Published writers. Before I knew it, the day was upon me and instead of making excuses, I found myself in the car beside my husband, navigating our way to the beautiful Bantry.
We’d been holidaying in Trabolgan in East Cork, but it was still a two-hour drive. When we arrived in the hotel on Wednesday evening, we were both fit to collapse into bed. I was unpacking my bag when a white envelope caught my eye. It was sitting on the table and it had my name on it. Inside was a bookmark, a lanyard with “artist” written on it, and a copy of the programme for the week. My photograph was in it, alongside my other Play It Forward fellows, Gonchigkhand Byambaa, Neo Gilson, Sara Chudzik and Majed Mujed. There were also details of other events featuring authors including Lucy Caldwell, Louise O’Neill, E.R. Murray and Marianne Lee. The name dropping could go on and on. I only wished I could’ve stayed for the week!
Finally, on Thursday 14 July 2022, almost a year to the day that I was offered my place on the Play It Forward programme, I was preparing to introduce “Rachel” to the world. Gráinne from Skein Press told me not to be nervous, that I was reading to friends. Usually I would have someone read on my behalf because of my speech impairment, but that wasn’t going to be accepted as an excuse to weasel out of reading! The words were behind me on the screen. As I read, I became Rachel. People laughed, which was such a relief. It was such a pleasure to hear my fellow writers read about their experiences of marginalisation and belonging. Stories of cultures combining, memories of home and family members, themes of difference and trying to fit in. I was in awe of the talent of my fellow writers, and I hope to see more of their work in the future.
In five months, the Play It Forward Programme will come to an end, but I will always be grateful for this wonderful journey. I would like to thank all at Skein Press, particularly Nidhi, Mahito, Grainne and Fionnuala; the Stinging Fly, particularly Declan Meade; my outstanding mentor David Butler; the Irish Writer’s Centre; Independent Living Movement Ireland and the West Cork Literary Festival for affording me this unique opportunity. I will never forget it as long as I live.
The Time is Now #PASNow
Ah, haven’t you all missed me blogging about the same thing over and over again? Once again, I’m writing about an issue close to my heart: the need for Personal Assistance to be recognised as a legal right in Ireland.
Independent Living Movement Ireland (ILMI) have relaunched their #PASNow or #PersonalAssistanceServiceNow campaign. The aim of this campaign is to raise awareness of the important role the Personal Assistance Service (PAS) plays in the lives of disabled people across the country.
So what’s the story behind this campaign?
In 2018, Ireland became the last European country to ratify the United Nations Convention on the Rights of People With Disabilities (UNCPRD). According to Article 19 of the UNCRPD, disabled people should have access to a range of services to enable them to live independently, including home help and Personal Assistance.
Currently, even with the ratification of the UNCPRD, Personal Assistance is not recognised as a right in Ireland. In fact, the Personal Assistance Service was launched by the Center for Independent Living in 1992 as a pilot scheme, and it remains a pilot scheme to this day. This means that funding for this scheme could be relinquished at any time, leaving thousands of disabled people across the country without a service that makes a meaningful difference in their lives.
Surely that couldn’t happen? Don’t be so sure. In 2012, a group of disabled people were forced to take action when Health Minister James Reilly announced sweeping cutbacks of €12million which would have eradicated the Personal Assistant Service. Although these cuts were reversed, the reality is that 44% of Leaders (PAS users) only receive services for the equivalent of 45 minutes a day (Source: Pauline Conroy, Disability in Ireland, 2018). Could you squeeze your life into less than five hours a week? Furthermore, there are no guarantees that following the financial devastation that COVID-19 has caused, that funding for the PAS is safe into the future.
Without the right to a PAS, many disabled people are living mediocre lives, not reaching their true potential. Many young people across the country are dependent on aging parents to cater for their personal care needs. Others (it is estimated to be 1,300 people at least) are living in unsuitable nursing or residential homes, with little control over what time they get up, when and how they are showered and dressed, or who carries out these tasks for them (as highlighted in a HSE report entitled Wasted Lives: Time for a better future for younger people in Nursing Homes). Julia Thurmann was one such lady who was trapped in a nursing home for over ten years, when all she needed to live independently was accessible housing and personal assistance. Her story is not an isolated one. This is not acceptable in twenty-first century Ireland.
So what exactly are disabled people looking for?
Independent Living Movement Ireland has divided what disabled people are looking for into five headings:
- Define: The PAS needs to be defined as a service that offers choice, dignity and respect. In order to do this, funding for this service needs to be ring-fenced and separated from home help services.
- Legislate: Make PAS a legal right in Ireland so that those who are wrongfully denied this service have recourse. That way, Ireland will be compliant with Article 19 of the UNCRPD.
- Invest: There has been no substantial investment into the PAS since 2008, despite a growing demand for the service. ILMI has asked for the PAS budget to be increased by €12.5m annually. Woah, that’s a lot, you say. Well yes, but it’s just as costly, if not more so, to have disabled people living in unsuitable residential accommodation. Or to have a family member denied the chance of pursuing a career because they have assumed the role of unpaid carer. This creates long term dependence on the State and puts pressure on the HSE over something that is not a healthcare issue but rather a human rights one.
- Standardise: Anecdotally, disabled people know that it can be more difficult to access PAS in some areas than in others. Introducing a single standard assessment of need across all HSE CHOs (Community Health Organisations) would make the process fairer with the removal of unnecessary bureaucratic barriers.
- Promote: A PA is not a carer, nor does he/she know what is best for the leader. The Leader should have full control over the service. This message must be strong in order to shatter the assumption that disabled people are incapable of knowing what’s best for them. Regardless of one’s impairment, living independently is a basic human right.
Disabled people should not be reduced to downplaying their abilities in order to access services. They are not objects of care but equal citizens who, with the right supports in place, have so much to contribute to our communities and the economy.
So, how can I help?
There are so many ways to get involved in the #PASNow Campaign. For further details, please email info@ilmi.ie. Showing solidarity sends a powerful message that every single one of us deserves to have choice and control over our own lives.
Go Easy
I’ve grown up a bit since starting this blog. A few short years ago, when I wrote a blog for mum’s birthday, I mentioned my disappointment in failing to secure Adele tickets. I knew every word to her new album 25. But oh, how priorities change! Although my daughter is almost ten, I’m not as time-rich as I’d envisioned. I still have to parent, albeit it has become easier physically (though trickier emotionally – the joys of parenting a preteen, what with monitoring screen-time and conversations that turn into mini-debates). I’ve been so busy that I haven’t even had time to listen to Adele’s new album, but I’ve heard “Easy on Me” and it’s definitely a message that I want to scream at the top of my lungs.
World, go easy on me. No, that’s not what I want to say. I want to say: Sarah, go easy on yourself.
Almost twenty-two months. It’s been almost twenty-two months since the “old normal” disappeared overnight. The end of February will mark two years since Covid19 reached us here in Ireland. None of us could have imagined how much would change between then and now.
We were resilient then. We were prepared to do whatever we had to in order to curb the spread of this new virus. We stayed at home and worked in our pyjamas. We homeschooled the kids, against all of our wills. This was only going to be for two weeks, to flatten the curve, we were told (but nobody believed this). Our children saw out the end of the 2019/2020 school year at the kitchen table. On the day that the first lockdown was announced, our daughter had just brought back into school her consent form for her school tour, an indication that none of us really foresaw what was about to happen. On Sunday 8th March 2020, I stood in the Church at a pre-First Communion mass with a group of parent friends, speculating about this virus that we assumed was millions of miles away.
Four days later, Leo plunged us into lockdown, and the rest is history.
You know all this. I just wonder is anyone else where I am now. I feel exhausted, absolutely worn out. Like my daughter who is waiting in anticipation of Santa, I’ve been a good girl. I’ve done everything I’ve been asked. I’ve barely been anywhere in two years. Being captive in my own house, I willingly got involved in many activist groups (namely with ILMI, which I loved), and I gathered a collection of activists’ stories, which kept my mind from wandering into dangerous places. At first it was just for fun, but I never was one for doing things by half. I refused to acknowledge the glaring warning signs of burnout.
And I’m sure burnout is a common phenomenon. I’d imagine that those in the medical profession, who quickly discovered the meaning of the word “vocation” would scoff at the rest of us using that word. But that’s how I feel right now-completely burned out. I’ve written many times about how writing is my go-to tool in times of mental distress, but it is incredibly difficult to be in a creative mindset when the media is constantly reminding you that just as we get a handle on this pandemic malarkey, things change again. If you turn off your notifications, your partner or someone you randomly meet in town is always willing to bring up the dreaded “C” word.
To be honest with you, I’m at the point now where I would gladly shut out the world for a while and chill watching telly all day in my pyjamas. I’d love to remove myself to somewhere remote with a stack of books and read, write and sleep without interruption. I’d love to be on a train to Dublin for no other reason than to meet friends, eat good food and talk shite before heading into the city to look around the shops and buy unnecessary shite. I could still do this if I wanted to, I suppose, but it’s not the same. There’s always that undercurrent of fear. It’s not difficult to see why the so-called “conspiracy theorists” become so annoyed at the mention of restrictions. Some of these restrictions don’t even make sense. Mixed messages from the media, it’s all enough to make your head melt.
And the pandemic isn’t the only thing occupying our minds. We’re still working, raising our kids, caring for loved ones. We’re still experiencing the everyday drudgeries of life: bills, sickness, bereavements. It hasn’t been an easy time. So if you feel exhausted right now, I reckon that sounds about right.
And if you feel this way, you are not alone. This cursed pandemic is far from over, but I say it’s time to indulge in some serious self-care. Turn off the news, turn off your phone, take a deep breath and go easy on yourself.
We need to look after ourselves, and each other now.
The Big Imposter
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
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.
Wobbly Yummy Mummy 