These blogs are categorised both by subject and month. If you have any trouble navigating it, please do not hesitate to contact me
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.
(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.
It was the year of solid promises that crumbled away like dust,
Of rising temperatures and gremlins sitting on our chests.
Nothing to listen to but the echoing of our own self-doubt,
Watching careful plans fade away like ink on yellowed paper.
It was a year of suspicion, devoid of hugs or handshakes
When the mechanical birds of flight stayed snug in their hangars
The skies devoid of the faint white handwriting
Diaries of excited travellers in flight.
A year our children were subjected to education
By underqualified, panicky idiots who swore that they weren’t born for this.
The glare from the screens washed their immature brains
With worlds of fantasy – none as scary as this one.
No more was a cough or a fever a mere infection
No more could those we loved most be trusted.
We eyed each other with suspicion. Are they from the same household?
Who are these heathens spreading this new alien disease?
to hide the fear, we joined the zoom calls and the google meets,
Recreated the pubs from our sitting rooms,
Lying to ourselves, telling ourselves we’ll be together at Christmas,
One day, some day, this will all be over
Those voices haunt me at night, like a pile of unfolded laundry-
Will my daughter grow up without my nagging?
How long will my fragile china mind hold itself together?
What will be written on my tombstone?
Assuming of course I won’t be turfed into the fire-
Who knows how many skeletons will lie disappearing into the soil
Their faces covered to hide their pain?
It was a year we’d all sooner forget
Except we must always remember
How we were reminded of how insignificant we were
And how little we really are. How humbling!
A weight off our overburdened shoulders.
Why take ourselves so seriously?
It’s been proven that nothing is permanent
Not even pain.
We will smile again when we and the world heals
Together, as one.
2 1 2021
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.
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.
My first attempt at a children’s story, based on a true story! Hope you enjoy it.
The morning light illuminates the cage. This is my favourite time of day, when I can sit with my backside to the warm summer sun. My favourite spot is the far left corner, where I wiggle into and huddle down. Sometimes I lie there and sunbathe, teasing Tessa. Tessa comes to have a look at me most mornings. She’s a cantankerous old biddy, and she doesn’t say much which I find rather rude. She doesn’t talk about the weather, or the quality of cabbage these days. Instead she just lies on top of the cage, giving me her best death stares. To be fair, her stares are quite frightening: her eyes narrow and fill with a hellish darkness. She would love to come in here and fight me to the death, doing her victory mews as she rested her paws on my defenceless little bunny body. As if that would ever happen. After all – my name is Clover, probably the luckiest name any bunny could have. And I am far from defenceless.
As I settle into my favourite spot, I hear a familiar creaking. No, it can’t be possible, surely? Surely, after all this time, and three previous offences those ditzy humans always remember to lock the gate? And yet, it swings open, even though I’m hardly leaning on it. I stare at it for a second, remembering my last great adventure. Those humans weren’t best pleased last time I ventured outside the cage. I remember distinctly the sweetness of the dandelions, the crispness of those weeds, especially the ones growing around the poles of the swings. It would be foolish to pass up the opportunity of a lifetime, to deprive myself of a lovely fresh morning salad.
This is the part I hate most, I think as I look down. That ground below is hard, and landing on it feels like a sharp slap. Nonetheless, down I go, wheee! Quick and painful. Ow! My poor delicate little paws. I hop over to the dandelions. Nom nom nom. These are even better when they’re fresh! This must be how humans feel when they eat at one of those gourmet restaurants.
Suddenly, I hear a clicking noise. It’s the noise of the human cage opening. There’s no escaping it: I’m busted now. Luckily, unlike humans, I can hop sideways and change direction quickly. I stand silently by the swings, eating the dandelions, marvelling at the loudness of humans. Honestly, they are so loud that I can never quite understand how they are on top of the food chain because they like to make so much noise. This is the alpha male of the pack, and he’s making a kind of whistling noise. Humans tend to make this noise when they are happy, but as I suspected, the whistling stops as he moves closer to the cage.
“Aw, are you serious?” he yells as he swings the cage door back and forth, as if he wouldn’t believe it was open unless he physically swung the door himself. Now, my Eng Lish isn’t great to be honest – the only word I really understand is “food” – but I think what he meant was “my word, the cage door is open and I believe my precious Clover has once again escaped. How awful.” It’s amazing how much humans can say in so little words.
He swings around and our eyes meet. Damn, I’ve been spotted. He stretches his arms out towards me, and for a split second, I actually feel sorry for him. I stay quietly in my spot, waiting for him to approach me. But as his cold shadow creeps towards me, a little voice whispers in my head. It’s a predator! Run, run, run! To make it fair, and because as a fellow bloke I understand the workings of alpha male pride, I allow him to come within an inch of me, only sprinting away as he bends down to pick me up. Now, as I said, my grasp of Eng Lish is terrible, but I wouldn’t even try to translate the words that I believe the male human is now shouting at me, because I’m sure there are children reading this story.
I wiggle my brown fluffy body under the expensive wrought iron gate, chuckling at the foolishness of humans. They think that they are so clever, but we animals are always one step ahead. I can’t resist stopping to look at the fear in my human’s eyes as he follows me into the front garden. Again, I feel sorry for him: he looks worried, which means he must really love me. But I can’t bring myself to let him win, and just as he’s less than a foot away, I hop out of the driveway into the Great Wilderness. The human follows me but I hop into a bush on the green, and when he comes nearer, I hop away again. I’m having such great fun. Who knew life could be so exciting?
The Great Wilderness is not how I imagined it at all. There’s not as many trees as I thought there would be; it’s more like a collection of human cages in a circle. Their gates are open, so I tentatively hop into the next human cage to see what it’s like. The menu is absolutely stunning, and so well presented. I would highly recommend this restaurant: the variety offered here is second to none. Yellow flowers, orange ones, purple ones – so many options. Where do I start? I nibble at the yellow one first. YUM! It’s so light and refreshing. I love the delicate aroma of these purple ones – just out of this world. Suddenly, I hear a human shriek. Honestly, they are so noisy – why the need to vocalise every little thing?
This human is a woman, and she’s not happy at all. Maybe I was supposed to make a reservation or something? Surely not – there’s no other customers? I only hope she appreciates the perfectly bowl-shaped hole I made in the middle of her lawn. It could be handy for storing her own food, or if she wants to feed me – hey, it’d be rude to stop her. She’s shouting and waving me away, even though I’m not finished. I’m not exactly impressed with her style of customer service – she’s a bit rude and abrupt, if you ask me. Though I must admit that the food is just too good for me to snub her place altogether. I make a note to come back later.
I’m tired now and contemplating going back to my cage to chill and sunbathe when I hear a slight rustling on my own front lawn. The sight of Tessa’s yellow eyes frighten me. She’s lying there like she owns the place, and I’ve a good mind to set her straight once and for all. I tiptoe towards her, conscious that her eyes are on me all the time. Suddenly, there’s a hiss, and she pounces, her face mere inches from mine. Perhaps this wasn’t the best idea after all. Nonetheless, I am always up for a challenge. I hop into the shrubs, waiting for her to follow me before hopping back out. I clamour towards the back garden, frantically looking around for somewhere to hide. Bunnies aren’t good at climbing trees. My only option is to hide behind the smaller human cage – I think I’ve heard them call it a “shed”. It must be like a holiday home or something. What is humans’ fascination with cages?
I curl up for a nap, confident that I am safe at last. One thing I will say for cage living is that you don’t get any of this drama – this adrenaline is too much for me, I’ll admit. But I should know by now that Tessa is not stupid. Annoying, certainly, but not stupid. Her feline shadow blocks the little sliver of light that was coming through. The yellow in her eyes has adopted a sort of ominous, luminous glow. Is this how my life is going to end? Surely not. Yet, she is edging towards me, her slinky body preparing for a chase. I turn to run, but it’s too narrow in here to build a proper momentum. That’s it, I think, as my short bunny life flashes before my eyes. I leap out towards the sunlight to land into the arms of another predator…
…my smiling human! Normally, I would struggle until he let me go, but to be honest, I’d much rather not be ravaged to death by a deranged cat. He puts me back in my cage with some fresh food, chuckling as he locks the hutch. Right now, I don’t care. I’m safe and back in my warm cage. Tessa looks up at me, and I press my bum against the cage in defiance. I believe in this instance, you humans would say “na-na-na-na-na.” Tessa understands, and slinks away in disgust as if to say “you’ve won this round, but I’d watch your back if I were you.”
I ignore her, stretching out with my full belly, exhausted after my busy day. I’m pretty confident that tomorrow will be quiet and boring – I can’t imagine the human leaving the cage door open again for a while. Still, I can lie here and sunbathe in peace, while dreaming of my next great adventure.
Having a lot of free time on our hands, all of a sudden, can be quite a dangerous thing. In recent days I find my mind wandering into dark, shady corners that I would normally protect it from, and thoughts that can become all the more sinister when overshadowed by a global pandemic. These thoughts vary from day to day. Lately I’ve been giving much thought to my career choices. At first, these choices were both sensible and socially acceptable. I did a good Leaving Certificate and decided to study English Literature in Trinity College. In fourth year, i was presented with another choice: to throw myself into my studies and get a good degree, or to compile a portfolio impressive enough to earn a place on the MA Journalism course in DCU. I didn’t have the energy to do both to the standard I might have liked, and I wept for two days when I got the rejection letter from DCU.
Maybe writing’s not for me, I thought. Maybe it’s just a hobby. It would be too difficult to try and pursue a writing career.
So I applied for jobs. Many jobs. The rejection emails and letters piled up on my desk as I continued to send application after application. It wasn’t impairment related as I never disclosed my impairment on initial application forms. Being unemployed can leave one feeling unhinged. I just wanted something, anything. My prayers were answered when Offaly Centre for Independent Living offered me a job. A good job. If I played my cards right, a permanent job. I was so relieved. I did everything I could to hold onto my job. It took the birth of my daughter for me to realise how unhappy I was. I was a PRO, in charge of the monthly newsletter. I was writing lots of words, just not the words I wanted to write.
I stayed for seven years. I stayed because it was safe. I stayed because despite being seemingly incapable and inadequate, I strongly believed in the philosophy of independent living. I stayed because I thought that no one else would take me with so little experience. These thoughts wreak havoc on one’s self-confidence and belief.
But underneath it all, I still wanted to be a writer. There was a major flaw in my aspirations, however: in order to achieve this, I was going to have to write. i was going to have to be interesting. I was going to have to be honest about some things, both with myself and others. When I survived a nervous breakdown in July 2014, I knew things had to change. I knew that I would have to take a risk and show my words to real, breathing people.
The blog – this blog you’re reading now – was only ever intended to be a temporary thing. It wasn’t supposed to be a disability blog, or a blog about activism – it was supposed to be my ticket away from all of those things. As time passed, however, it became ever more apparent that those two parts of me – writing and activism – could not be separated. The urge to communicate the real message of Independent Living and equal rights swelled within my veins until the dams could hold no longer, bursting all over the keyboard. I began to despair at my lack of control. I wanted to be a writer, not “just” a disability writer. I fought the urges, and lost. An article about someone “bound” to a wheelchair, the perpetuation of a victim narrative that no self-respecting disabled person would consent to be a part of, would bring me back to the keyboard, typing in a fit of rage. I felt I had a duty to add to conversations that were about me yet exclusive of my voice.
I fell into a rabbit hole.
“Be careful of being pigeonholed. It could destroy your career before it starts,” I was warned.
“This disability stuff can get pretty heavy for a blog,” another person told me. Still, I couldn’t take their advice. An invisible magnet always drew me back to independent living and activism. Even now, that can get annoying, but I’m tired of fighting against writing what comes so natural to me.
As I mentioned earlier, lately I’ve been pondering the word “writer” and whether it really applies to me. I’m not a weekly columnist. I don’t have a published collection of poetry or stories. I’ve tried to write the same novel three times, with each attempt ending in me leading the character into a cul-de-sac so deep that metaphorical suicide seems to be the only way out. So have I really earned the lofty accolade of writer? I would be inclined to say, no.
My vision of being a writer was having the ability to sit at my desk and stare at the screen in awe of my own words. My vision involved churning out poem after poem, story after story, without a moment’s hesitation. It involved generous pay cheques and prestigious awards, but above all, I thought being a writer meant feeling secure and confident in sending your precious darlings into the world. That there would be a point where I could produce a piece of work that I was happy with and confident with. I haven’t reached that point, because as I’ve learned with the support of writer friends and various online communities, that’s not what being a writer is.
Being a writer is in fact tortuous. Many fellow writers that I’ve had the privilege of speaking with over the last few months still struggle within the clutches of inadequacy, imposter syndrome and crippling self-depreciation. It seems that a lack of confidence, a fear of being exposed is par for the course when you are a writer. It also seems that a lack of self–belief as opposed to a lack of writing ability is a writer’s biggest enemy.
I write because I can’t not write. I write because when I’m not at the keyboard playing with words, the clouds in my head become heavy and dark. I write because I enjoy putting different combinations of words together. I enjoy trying to capture scenes, emotions, outer injustice and inner struggles.
And, more often than not, writing keeps me from lingering in those dark corners.
In the small corner of my office where I sit and hide, hoping words fall on my page,
I see the sun is shining from the confines of my cage.
I lift my weary arms to type, but don’t really see the use
When the world’s alight with chaos, the toll of many years’ abuse.
I try to write a story, to leave reality behind,
But deep inside I know there’s more sinister things on my mind.
Will I be around to see my daughter grow?
Will I see my friends and family again? Does my husband know
How much I love him?
And does it really matter?
It’s time to reflect on how God laughs at our plans
How we think we are superior
But yet this intense suffering was caused by man.
Did we ever have tomorrow?
It was never guaranteed.
Here is merely a reminder
Of what we really need.
We need love, hugs, and companionship,
A roof over our head,
Access to basic sanitation
To be warm, dressed and fed.
We don’t need the big house
Or to have two cars in the drive,
Not when the main goal is now
Simply to survive.
And if we are so privileged
To be here when it ends,
What will remain are memories
Of long chats with our friends.
But it’s dangerous to trivialise
And paint over all the cracks
When an even more insidious illness
Will no vaccine ever hack.
That voice inside our head –
The one that loses hope,
The one that says we’re better dead
And then hands you the rope.
That voice poses as a friend
But will not hush until you end
The voice, or your life –
I hope you find the energy to fight.
And if you feel overwhelmed
Take things day by day,
Allow yourself to shout and cry,
To feel anger and dismay.
Embrace the disappointment
Of all that won’t now be.
When will this be over?
We’ll have to wait and see.
And so I take this opportunity
To thank each and every friend
For their companionship, love and thoughtfulness
And I promise when this ends
Never again shall I take for granted
Your chats and your embraces,
But for now, try to keep a smile
Upon your worried faces.
Because fear is infectious too
It paralyses to the core.
We only ever had today:
It was true then, is true now, and will be the case evermore.
Invisibly she sits
In the cocoon of her own home
Every day, alone
Churning out her little poems.
As a child she played writer
Imagining awards and trophies,
Never thinking for a second she’d
Be isolated and alone.
She looks outside her window
At the suits rushing to work,
Children on the bus
Wearing the garb of their school.
They all look the same,
And at first glance one couldn’t
Distinguish them by name.
The men in grey suits drive past
In their shiny, new cars –
Symbols of success –
They have made it far –
While she huddles into the safety
Of her oversized dressing gown;
She huddles into it so fiercely that
Within it she may drown.
She lowers her head into the robe
Hoping that they can’t see
And then her keyboard rages against the silence
Of perfect domesticity.
She lays the words before her,
Hesitant but proud,
The freedom to say these dangerous things
That she’d never say out loud.
But now, she feels pathetic –
She feels tired, and weak.
These words floating before her
Are not only hers,
But also belong to
Those who cannot speak.
She saves them in a Word file
Never to be seen
Far too dangerous to be unleashed –
People are far too mean.
What she shares is softer
Without the anger and the spite –
People take personally everything she writes.
They tell her she’s a natural
And should write for the paper
Ignoring that she has no time
For this publishing caper.
Because unfortunately, when day is spent
And the kids are tucked up in bed
She doesn’t have the energy
To wrestle within her head.
Instead she packs the lunches,
And closes her eyes to sleep.
These kids won’t stay young forever
And so, for now, these words can keep.
Two months ago, how would we have described the kids of today?
The word ‘snowflake’ was bandied around an awful lot.
They probably had no empathy for others.
They spend too much time on their tablets and not enough time outside.
They were selfish and obsessed with material goods. Always wanting more. More toys, more technology, more games.
And now we find ourselves in the middle of a global pandemic, the biggest threat many of us have faced in the history of our existence.
School and extra-curricular activities cancelled. No visits to play centres, not even to our local playground. We cannot even visit aunts, uncles, grandparents or friends. No more playdates or day trips.
In the midst of it all, it is the kids, not the adults, who are coping so well.
They are using their tablets to keep in touch with each other, and have learned quickly how to use technology to host group calls (I’m now only becoming used to Zoom calls). They watch YouTube for inspiration for art projects.
With no busy schedules, they have to spend more time at home, maybe picking up books that they otherwise would have had no time to read.
They use Google to learn about animals, other countries, famous people.
They want to help. They make cards for the frontline staff. They write letters to nurses thanking them.
Of course, sometimes they play games on their tablets. Maybe for longer than they should. And that’s ok too.
They are learning about the emotions that our generation of parents have been accused of shielding them from for too long. Sadness. Disappointment, Anger. Loss. We cannot give them everything they want, and they are learning to cope with that.
We are no longer raising the snowflake generation. We’re raising the generation of children who will change their world through kindness, empathy, understanding and compassion. We’re raising a generation who understand that physical and mental health must go hand in hand. We’re raising the generation that one day will make the world a better place.
And in fact, they already do. And I for one am very proud.