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 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.

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“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 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.

My Journey Into Activism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

Forgiveness, Please!

So, where have I been in the monotony of lockdown, I hear many of you ask. Well, like many of you, I have been homeschooling and sorting out my house. Actually, that last part is a lie. I’ve been sorting out my head – after years of using this blog as some sort of replacement therapist, I started talking to a real one, a qualified one instead. If you have the money, I strongly recommend it. Even though I’ve written about my mother dying and the trauma surrounding Alison’s birth/first homecoming, I’ve never relayed any of the feelings behind these things to a professional, and now, at a time when I have far too much time to think, I decided that it was the right time to tackle my demons and get my real life back. And I have to say, it’s going far better than expected. I feel so different, and more like myself. Look, I’m even writing a blog – it’s a miracle!

We started talking about Alison’s birth and the emotional rollercoaster that came with that, the unfairness of the scrutiny we were under and how it affected my mental health to the point where I stupidly fought Postnatal Depression on my own. She responded with things like “that was hard” and “that was so unfair and clearly damaging”, which made me feel validated in what I felt. Then, at the end of the session, she sent me a worksheet – on forgiveness.

My first reaction was, “Well, clearly she wasn’t listening as well as I thought if she thinks for a second that I can forgive the feeling of being scrutinised, not to mention the subsequent three years (and probably longer, if we’re being honest) of depression.” I shut down my laptop, walked away in anger. I’m not ready to forgive, I thought. That time after Alison was born damaged my confidence, and my relationship with my husband and my child. I felt deprived of the freedom to make mistakes like other mothers. I had been subjected to excessive scrutiny, making an already stressful time, even more so.

But a couple of days before my next counselling appointment, I opened up the file again and read it. Forgiveness is not about forgetting how you were wronged, it is about letting go of anger. I realised that I had been carrying anger around for a long time, and that it was now exhausting me. I realised how, sadly, that anger led me to decide that I couldn’t face having any more children in case the same thing happened again. That anger and fear stopped me from seeking help at a time when I needed it most. Every year, I find Alison’s birthday overwhelmingly emotional because those memories and feelings come flooding back.

And I started to think more closely about the anger that I was feeling. I cannot deny that some good things have come from that anger. I started writing about my experiences as a disabled parent because of it. Many of my peers came to me for advice on starting a family and accessing services on the back of those angry words. I became involved in the (Re)al Productive Justice Project, where I spoke about my experiences with the Health services, both positive and negative, and in doing so, highlighting the physical and attitudinal barriers to parenthood for disabled people. I’ve spoken at the International Disability Summer School about the shortcomings of the maternity services for disabled parents. I’ve written blogs and magazine articles. My blog was quoted in an academic study of disabled writers by Elizabeth Grubgeld, Disability and Life Writing in post-independent Ireland. Most recently, my blog was included in a radio segment called “In the Bleak Midwinter,” which documented a range of women’s stories, some of whom had given birth in mother and baby homes. It was the first time that I considered my story to be part of a wider picture, the ongoing injustices against mothers and their children in Ireland. So I am proud of the part my story has played in this wider narrative.

However, if this stupid pandemic has taught me anything, it’s that life is delicate. It’s short. It’s so precious. And now that I am really ready to heal properly, I don’t want to waste any more time seething in resentment and pain. I want to enjoy my life. So here goes…

To the medical professionals who doubted me, and in turn made me doubt myself – I forgive you.

To the Public Health Nurse, for your scrutiny – I forgive you.

To anyone who expressed doubt when I needed your support – I forgive you.

To those who judged me – I forgive you.

And finally – to that face that looks back at me in the mirror every day, who gave your baby the jar food instead of cooking fresh, who gave (and still gives!) their kid way too much iPad time when times got tough. Who saw seeking help as a sign of weakness, who made some crappy parenting decisions (but a lot of decent ones too) – I forgive you too.

And that forgiveness feels so good.

Medical Model vs Social Model vs Self

Last Monday evening I sat on my kitchen chair, biting my lip, unable to stop the tears falling from my eyes. I didn’t want to admit it, but I was exhausted, and in so much pain. I was also frightened by how out of control I felt. How had I got here, at the tender age of thirty-six? The pain was shooting into the back of my knee and every time I stood up, my right leg crumbled beneath me.

You see, I fell in September. Outside, while crushing a plastic bottle so that it’d fit into an overflowing recycling bin. Falls are nothing new to me; I fall so often that I’ve actually learned how to fall in order to protect my head. I normally have pain for ten minutes, tops, and am then able to mosey about my normal business. But since this particular fall, my right leg and I have been at odds. I’ve been exercising, resting it, applying hot water bottles, taking painkillers, going without painkillers. Nothing seems to work.

The truth is, I have had a somewhat troubled relationship with my body. It began with the prescribed physiotherapy as a child which continued into my teens and continued through the stubbornness of my right leg which turned inwards (and still does), tripping me over. I tried in vain to straighten out my leg. I did the physio, I had botox. I resisted using a wheelchair until my early twenties. But I succumbed, and my internalised oppression tells me that this is why I’m suffering now, that this is somehow my own fault.

I’ve been really busy this year, which has left no time for writing. Trying to navigate the emotional ups and downs that come with a global pandemic, with a terrified child, has been exhausting. Then I became involved in various projects with Independent Living Movement Ireland, and suddenly I hadn’t the time to write that I used to. Lately, however, my body has forced me to slow down and reflect, and once again I find myself questioning the same things. Given this pain that I’m currently experiencing, to what extent is disability really located outside of myself? I live by the principles of the social model and one of its architects, the late Michael Oliver, once proclaimed that “disability has nothing to do with the body.” So if I believe that disability is caused by barriers, am I supposed to ignore whatever it is my body’s trying to tell me? To fight for my rightful place in society, do I need to leave my Cerebral Palsy at the door and focus exclusively on political action?

After spending too much time feeling sorry for myself, I began to consider my next move. It doesn’t look as though this pain is shifting anytime soon and I want – need – to start writing again. Maybe even start working again, more than the odd bits I’ve been doing.  I transcribed a number of podcasts and compiled a collection of stories about the Independent Living Movement, and now that’s nearing completion, I’m thinking about what to do next. Finish my novel? Do another course? Compile another poetry collection? Whatever I choose to do,  I know I’m going to need supports in place in order to do it. I went and got a special chopping board the other day which in theory means that I can now prep food in half the time. I put a grabrail with suction cups on my front door so that I can pull it closed behind me when I’m in the wheelchair. I have a shower chair, and a grabrail on my bed. I also have a Personal Assistant Service (reduced because of Covid) who help me do chores – they can do certain tasks that would take me hours in a matter of minutes! This allows me the energy I’ve needed to compile those stories, which is my biggest achievement this year.

And, eventually, Covid will piss off. But I will still be disabled (in the social model meaning of the word). The aftershocks of the extra money that the government is currently spending, coupled with the deep recession that we are heading into, means that the funding of a true PA service that allows disabled people to have full control over our lives, may once again be threatened, as although the legislation allowing for the provision of Personal Assistance has passed through the Seanad, it hasn’t yet been signed into law. Decisions about what kind of supports are available to us are still being made by medical experts; we are not fully trusted to decide what we feel is best for ourselves.

And while I have to silently contemplate what it means to be a wobbly yummy mummy now approaching my late thirties, I must try harder to remember that my quality of life should not, and will not, be dictated by my impairment. However, it certainly would be enhanced by having access to the correct products and services, chosen and controlled by me. I have so much more to achieve, to do and see, and to give. 

I cannot be fixed. But our society sure as hell can. So let’s roll up our sleeves and keep building a better, more inclusive future.

Institutionalised

I am eight years old. My parents are in the front of the car, I’m in the back. I’m the only one of my siblings who is being spoiled with one of these many trips to Dublin. They want to look at me again, to bend my legs back and forth, to mock me by “testing” the strength in my arms. At least it’s a day off school, I suppose, a day free from being reminded that unlike my classmates, I can’t knit. I can’t run. I am not like the others. The others don’t make these trips to Dublin.

I am outside a brown building. Coming out of the automatic doors is a little boy, around my age. He is wearing exaggerated metal splints around his stick-thin legs and walking like a tin man. He stands out, he’s too obvious; he might as well be wearing a bell and shouting “leprosy!” I’ve been threatened with these splints a number of times. A punishment for my legs, for not cooperating. Inside, I am stripped down, exposed. The experts stick markers to my legs and calls them diamonds. Then I walk and walk and walk. I am tired, but I am told to keep going. Push that body. Don’t let it defeat you.

Now I’m ten. We’re staying with my aunt in Belfast. Well, mum and I are staying here. We’ve been coming up and down for weeks, going to the Musgrave Park Hospital. I wear the special markers again and the computer shows the doctors how my muscles move. I walk up and down and up and down. The doctors tell me I am a supermodel, and it must be true, because only supermodels could have their bodies scrutinised and discussed at every angle. They’re recommending botox to loosen my muscles, so I can walk better. Mum tries to make a joke of it, saying that she would love botox. Perhaps, after all this time, this botox will make my life better. Yes, this is the miracle cure I’ve been waiting on since forever. After waiting in a hospital bed for what feels like days, they give me the injection to the back of my right calf, and I am disappointed. Surely to be made normal, I must be ripped apart and sewn back at the seams?

I’m fourteen. To appease my mother I’ve gone into respite, knowing that in spite of her insistence, I won’t enjoy it one bit. I wake up on the first morning to find a nurse, evidently bored on the night shift, unpacking my things. I’m angry, yet I don’t interrupt. There’s no point: she won’t understand my anger. Instead I lie there, silently watching her as she judges my clothes, raises her eyebrows at the sweets my mum packed me. She checks every corner of my suitcase. I feel invaded, but I’m not sure if I am justified in this. Maybe this is just something we disabled people have to put up with. I don’t like it one bit.

Transition Year and one month off my seventeenth birthday. I’ve written a play, and the year head has agreed to allow the drama teacher and I to produce and direct it. This is the beginning of a blossoming writing career. I have so much to do, but I am not in school. Instead I am in Dun Laoghaire, the NRH to be exact.  I am to get two weeks’ intensive physio-, speech- and occupational therapy. Have I any idea how lucky I am? I’m only in TY, I’m told. I won’t miss much. I am put on the children’s ward. The girl in the bed next to me is called Stephanie. She becomes breathless when she tries to talk, but she is sweet. She’s also frighteningly institutionalised. She is my age and has been here a few months, but has already forgotten what life outside is like. The happiest part of her week is when one of the nurses does her nails. Life here is regimented. On the first day I wake up looking for a shower, and I’m told that showers are not an everyday thing. Instead I am presented with a basin of soapy water and told to wash myself. On my days to shower, despite my insistence that I can manage, I am told that it is unsafe for me to shower alone. I have to tolerate a stranger touching me, seeing my bits and pieces (“nothing we haven’t seen before” they say cheerily)  as I am scrubbed much like a horse might be. The nurses laugh at my embarrassment. Typical teenager. But I am not a typical teenager. If that were true, I would be in my home economics class, not here. We go to bed with a video at half eight. I haven’t gone to bed this early since I was eleven. It’s not really an opportunity to rest, either: people need to be turned and toileted during the night, sometimes people cry out for assistance. I am only here for two weeks, but the memory of it will last a lifetime. They prescribe lots of physio. Even now, at thirty-five, I still do it. It’s good for me.

I’m still in Transition Year, back in the safety of my own routine in Tullamore. I’ve done work experience in the Tullamore Tribune, and my play is about to go live to an audience of four hundred people over two nights. It feels surreal; it’s what I’ve always wanted, and yet I feel like I’m on the outside looking in. I also feel exposed, as these characters are based on real-life people that I know and love. I also feel immensely proud and validated that my teachers trusted me with the task of writing and producing this play. In a parallel universe, we have to visit the National Learning Network as part of the “Community Care” module.  It’s an alternative to college for disabled people, people like me. As I sit listening I recognise its merits, but I also find myself wondering whether there is more to life. Will I end up in a day care centre in my twenties, drinking tea and making idle chit-chat about the weather? The prospect terrifies me, though I don’t know why. In many ways it may be easier than the mainstream route, but I am stubborn. Too stubborn sometimes.

So I enter fifth year, still terrified. I am just another number, I tell myself. Nothing special about me. I’ve convinced myself that the only way to avoid that day care centre is to study. I resolve to get enough points to get into Trinity, although I have no idea what I’m going to do after I get my degree. I become fixated with this aim; it’s the only thing that keeps me going.  My life revolves around school. I stop eating, watching with satisfaction as my belly shrinks into nothing. I am normal, I tell myself. I don’t stop studying until after midnight every night. I silently cry my way through lessons, despising my own weakness. I am lonely, but I don’t have time to go out gallivanting at weekends. I have no choice. I must do this. The Leaving Cert nearly breaks me, but I conquer it. Great triumph over adversity story. I am going to Trinity.

Trinity is a different world. I am equal here. With the right supports in place, I blend into the background, silently struggling with imposter syndrome. I can’t compete with these genii who claim to have been reading Jane Austen since they were five. I struggle in silence. I got a scholarship to go here. If I ask for help, people might think that I’m a dumbass and kick me out. I’ve resolved to leave when I am compelled to confide everything in Orlaith and Declan, the disability officers. They tell me not to leave. They also confirm something that I have suspected my entire life: that there is nothing wrong with me and that we need to use our inner fire to eliminate barriers for disabled people. I shamefully tell them I broke my electric wheelchair by bringing it across Front Square, but they don’t berate me (much!!). Instead they insist that the solution is to build a level-access pathway across the cobbles. I start to think that if an institution as old and as steeped in history as Trinity College is can make such dramatic changes, then there is no excuse for the rest of the world not to make these changes too.

During my time at Trinity, I learn so much more than how to write a critical essay. I learn how to be independent, how to cook, how to work and pay my bills. Every morning I wake up, and know that I have choices. I don’t always make the right ones, and having that freedom to fail and learn from those mistakes is vital. For example, one month I spend my rent money on God knows what and have to spend the next few months eating cereal. A hard but important lesson! I leave Trinity with the second class honour that was so important to me, though now I can’t remember why. I don’t even have the Latin parchment on display, I think it’s in my attic somewhere. After I leave college, I have no idea what I’m going to do. I feel like I’m leaving part of myself on campus, but with the grey buildings and the beautiful campanile and the leafy trees and students in their dufflecoats, I forget I’m not in the real world. The real world is cruel and it reminds me of my place: outside it. I apply for hundreds of jobs, but I do not get called for a single interview. What was I thinking, I berate myself, nobody would want a useless cripple.

Eventually, I am thrown a lifeline and Offaly Centre for Independent Living offers me a job. Mum tells me she was happier when I got offered a six-month internship with HP, an experience which would’ve cost me more money than it was worth. But I am delighted, and I still look back on my time there with fondness. My job is ridiculously easy. It is the emotional toll that is harder. I learn all about independent living and equal rights only to discover that these are only theories and that in reality Independent living cannot be achieved. I witness people becoming afraid to ask for what they wanted as the focus shifts to what people need at a basic level. There’s no money, we are constantly told at staff meetings.  We need to prioritise services, get people out of bed. Nothing we can do about it, we are told. Things are tight at the moment. I am an upstart, a troublemaker. I am not cooperating. I find myself trapped in an institution of my own, the dark depths of my own mind. I think back to my own respite stays of my childhood and feel physically sick at the thought of them being a long term arrangement, for me or for anyone.

It bothers me, even now in my position of privilege – I live independently, in my own home, with my husband, daughter and naughty little puppy – that there are people out there who are incarcerated by circumstances not of their own making. Many are living in hospitals either because their own houses are not wheelchair accessible, or because there are not enough ‘community supports’ like home helps and Personal Assistants, and it annoys me. It annoys me because I know that I am lucky. It annoys me because I constantly feel that I have dodged a bullet. It bothers me to hear about disabled people who are ready and willing to contribute to our economy being stuck at home because only their personal care needs are being met. It infuriates me sometimes that I was naively led to believe that disabled people could ever be viewed as equal when the story on the ground, as well as the lived reality, seems to be disturbingly different.

Sometimes, I wish I didn’t care. That I could get on with my life and writing and ignore the many rights that are being denied to disabled people at the moment. I’m not trying to make myself out to be a martyr, I promise. All I’m saying is why must there always be barriers to break through, obstacles to overcome? Why do I say the same thing over and over again to the point where I’m nearly boring myself?

Because, dear reader, I know what the alternatives are. And I never want to become institutionalised, in body or mind. I reserve the right to live a life of my own choosing, and I’m lucky to be free to exercise that right.

I am getting older now. My body – my fabulously unpredictable body – is letting me down in ways it never did before. It is scary, and I know that it is partly my own fault. But this is my vessel. It will never be perfect, it cannot be fixed, and nor would I ever want it to be. This was the way I was made – not worse or better, just me – and after all these years, believing that makes me stronger than any physio regime ever could.

Power to change

If you are reading this on 8 February 2020, it’s election day! Even though the general election in Ireland was only officially called about a month ago, it feels as though the pre-election propaganda has been going on for months and I’m sure, just like me, you are all tired of it, dear reader. (And speaking of being tired of people droning on, many thanks to those of you who read the throwback blogs I’ve been sharing on social media every day since this election was announced. You are truly my stars).

Admittedly, although there have been a few leaders’ and political debates on the telebox over the last few weeks, I haven’t actually sat through a whole debate. However, I have seen and heard small glimpses of them and it was like watching toddlers fighting over who drew that lovely picture. My own daughter will be eight on Sunday and I consider her too old for “he said, she said” sort of nonsense. Micheal Martin and Leo Varadkar have been particularly irritating. Neither of them have done the disability sector any favours over the years. The cutbacks began in Micheal’s time, and Leo has been the proud Leader of a party that once proposed the complete obliteration of the now precious Personal Assistant Service (which was proposed by James Reilly, then Minister for Health, in 2012).

People haven’t forgotten these things, it seems. Things in Ireland are on the cusp of change, with many once-sceptical people declaring their intention to vote for Sinn Féin. A decade of poverty, homelessness and unemployment have driven many people to the edge, with many of us still looking for signs of this economic upturn we’re supposedly in the midst of. I think it’s Orwellian of the government to assure us that things are improving when the cost of living is so high, when over ten thousand people (just three thousand people shy of the population of Tullamore, my home town) are homeless and those who emigrated during the lows of the recession saying that they couldn’t contemplate moving back in the near future to a country offering few prospects of career progression. As a struggling freelance writer, it’s easy for me to empathise with their point of view.

With the all-important vote here now, I’m still undecided who will be my number one. I know it’s so important to use my vote – not to would be a slap in the face to those brave and fearless suffragettes – but looking through history, I’m starting to wonder whether it’s really the way to make real change. Please don’t think that I’m trying to discourage people from using their vote – far from it! – but it was an Orwellian character, the everyman Winston in the dystopian novel 1984, who said –

“If there is hope, it lies in the proles.”

What I mean by this is that we need to be fearless and unflinching in our own convictions, and it is our responsibility to ensure that those who are elected into power follow the wishes of the people. That can only happen if we stand up and use our own voices with confidence and conviction. The people I admire in life are not politicians; they are ordinary people who were not afraid to make a stand. Rosa Parks, an ordinary woman, one day decided that she had had enough of being segregated because of the colour of her skin and initiated the Montgomery bus boycott in 1955. Subsequently, she became a symbol of resistance against racism in the USA, collaborating with Martin Luther King Jr in her pursuit of justice.

Seven years later, Ed Roberts, who had contracted polio as a teenager, fought to be accepted into the University of California, Berkeley. At interview stage, he was famously told “We’ve tried cripples before and it didn’t work.”  His subsequent acceptance into the University, along with some other severely impaired students, paved the way for future disabled students to gain entry. Roberts had a revolutionary idea that he was going to recruit and employ his own “attendant” as he wanted a life independent from his mother, Zona. He was going to “hire and fire” this attendant, and instruct them to carry out tasks as per his desires, not just based on what he was perceived to “need” by others. This left Zona free to pursue her own interests and subsequently Ed was not a burden on his mother. The establishment of the Center for Independent Living in 1972 heralded a monumental shift away from the misperception that disabled people could not make their own decisions or manage their own lives. Its establishment led to the philosophy of Independent Living spreading all over the world, even coming to Ireland.

The decision to bring independent living to Ireland did not come from government. No, it came directly from disabled activists themselves, including Martin Naughton, Michael McCabe and Donal Toolan. It was disabled people that took it upon themselves to revolutionise how services were being provided to disabled people at the time. This led to the founding of the first Irish Center for Independent Living in 1992. One of their first major projects, Operation Get Out, saw disabled people moving from unsuitable and outdated institutions into their own homes, where they could make both basic and life-changing decisions with the help of their Personal Assistants.

Over the years, disabled activists in Ireland have continued fighting and pushing for equality. Dermot Walsh is remembered for his work with Dublin Bus, and over the years, many disabled people have joined the campaign for accessible transport. In 2012, when the cutbacks to PA services were so cruelly threatened it was disabled people themselves, protesting for three days and nights outside the Dáil, who reversed that decision. Sadly, we have had no time to pat ourselves on the backs, because an activist’s work is never done. Many young disabled people remain trapped indefinitely in hospitals or unsuitable residential homes. According to research carried out by Independent Living Movement Ireland in 2017, 45% of those lucky 2,200 people in current receipt of PA services only have an average of forty-five minutes’ service a day, and people who have the highest personal care needs are being prioritised.

Can we really expect the government to bring about radical change? Or does the real answer lie closer to home? I have been reminded too often lately that life is short. How do we want to spend it? I understand that fighting and campaigning can be tiring, but believe me, complacency is a far more dangerous prospect.

I remember in 1997, when I was in sixth class in primary school, we had to write a composition about what we thought 2020 might look like. Some of it was bang-on, like having the ability to shop online and being able to pay for things by tapping your credit card. Of course, other suggestions were ludicrous, like having flying cars and being able to travel back and forth through time. But if you had told pre-pubescent me that in 2020, wheelchair users would still have to give notice to travel on public transport, that disabled people would still be trapped in unsuitable nursing homes and that we would not have access to the most basic services that enabled us to live independently, I don’t think I’d have believed it. Because it’s not only unbelievable – it’s scandalous.

The good news is that we can solve these things – us, the proles – by speaking out, saying no and rejecting the status quo.

Governments don’t always bring about the change we need. And they don’t want to reveal the dirty little secret: we, the ordinary people have that power. We’ve had that power all along, the freedom to use our own voices, to speak up on behalf of our peers, to say that the status quo just isn’t good enough any more.

Do you believe that one person can make a difference to the world?

And if so, why can’t that one person be you?