Category Archives: random

The Beauty of Writing a Novel

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Anyone who knows me will know that for the last sixteen months, I’ve been working on my first novel. (Well, I say with optimism that it’s my first, but after this experience I may well decide never, ever to attempt this again).

I’ve dedicated myself fully to this project. I even bought myself a bigger desk, twice the size of the dinky thing I’ve worked at for the last year, in the hope that the words will flow as freely as they tend to pop into my head when I’m on the loo or cooking dinner. And, I have to admit, it works for the most part: I have my own ‘office’, I go to ‘work’ everyday, I set myself proper writing deadlines.

The truth is, when I started to write this story last July, it wasn’t supposed to turn into the massive 130,000 word mess it is now. It was just an idea that I had in my early twenties, one of many throwaway ideas that came back to me. I’d tried writing this particular story before, but got bored after 4,000 words, and assumed that the idea was unworkable. Little did I realise that in the space of nine years, this idea would become all-consuming and that I would never be happy, not really, until it’s out of my system. And hopefully, the first crappy draft will be written by Christmas, though I may be over-optimistic at this stage. (by the way, first drafts are supposed to be crappy, so I’ve been told).

Writing a novel is both tremendous fun and an enormous pain in the backside. I’m in control of my main character. I can make her do anything I like (although a lot of the time she goes off and does her own thing). Making everything tie together seems to be my biggest challenge at the moment, along with organically tying in important statistics and facts into the fabric  of my story.

And it’s tiring. At the moment, ‘work’ seems to consist of opening Microsoft Word and staring at the words for three hours. Some weeks are more productive than others, and it’s during the bad weeks that I try to tell myself that if this was a ‘real’ job, I would have to grit my teeth, sit at my desk and work regardless. I’m creatively wrecked at the moment, but I’m afraid that if I don’t sit at my desk every day and plug away at it, nothing will get done.

That, I think, is the crux of it. Fear. The fear of being made to look like an idiot if I can’t manage to get this book finished and into the hands of readers. Fear that if my book is never published that I might have to abandon the prospect of having a writing career and start all over again. fear that nobody will like my book, or understand where the main character is coming from. I have successfully managed to push fear just to the edges of my brain so that I can write freely. I try not to think of you guys, my audience, too much so that I can stay true to my character and the situations she finds herself in.

I’m also afraid of success (getting ahead of myself I know) and afraid that I am offering more  of myself than I’m willing to give. Having Martin Naughton pass away has only cemented my desire to continue, in my own small, insignificant way, to change the world. I don’t want my daughter to grow up in a world where disability is something to be pitied, an ‘other’. Nor do I want her to live in a world where the only disabled people worth talking about is the ones who ‘triumph over adversity’ ‘defeat the  odds’, achieve more than people expect of them. All of our stories are worth telling: the successes, the failures and everything in-between.

I don’t want any regrets on my deathbed, any ‘what-ifs’. All I want is to make a difference and not rest until it’s made. And writing’s the only way I know how to do this.

In this spirit of determination, I will keep going, in the hope that I have something worthwhile to contribute.

A Tribute to Martin Naughton: Activist, Campaigner, Friend

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I woke up with a start this morning, the darkness threatening to suffocate me. My sleepy brain told me that I had woken up in a world that was different than the one I opened my eyes to yesterday, which was the thirteenth of October, 2016.

Then I remembered. I felt my stomach close in on itself as the events of the last twenty-four hours rushed back to my memory: Martin Naughton, prominent disability advocate and all-round good guy, passed away yesterday aged sixty-two, following a short illness. There is nothing worse than hearing the news, via social media (so tacky), that someone who made such a huge impact on your life has died. At first I thought (hoped) it might have been a hoax, a rumour, but as the Independent and RTE published their stories, the reality of our loss hit home.

Everyone in the disability world knows Martin. He’s our representative, our ‘go-to’ guy. If the Independent Living Movement was a mafia, he’d be our Don; he was always trying to think of new and seemingly radical ways of equalising the playing field for people with disabilities. (such as giving us full control over our lives in the form of Direct Payments – I know, outlandish, right?!)

Martin had an impairment called Spinal Muscular Atrophy, and spent his childhood in St. Mary’s Hospital in Baldoyle, where he developed a strong stance against the institutionalisation of people with disabilities.  He became a youth leader and coach there, and became a strong advocate for people with disabilities. When he went travelling in the US, he saw the disability movement in action first-hand and on his return to Ireland, immediately set about bringing Personal Assistance here. This began with ‘Operation Get Out,’ a programme designed to move people who had been institutionalised back out into the community and culminated in the development of Ireland’s first Center for Independent Living in Dublin.  There are now around 25 CILs across Ireland today, thanks to Martin.

Martin dedicated his entire life to trying to achieve equality for people with disabilities, but the first I ever heard of him was in 2005, when I was looking for a summer job in Dublin. My Personal Assistant arranged for me to have a job interview with him in Chief O’Neill’s in Smithfield. She didn’t know much about him, so I’d pictured a stern-looking man in a suit, wielding a pen and ticking boxes as I spoke. As it turned out, I didn’t do a lot of talking during that interview, but I’ll never forget it. Martin’s kind, soft features put me at ease as he spoke passionately about the need for Leaders (people with disabilities) to take full control of their own lives and to have a platform from where they could voice their concern about their Personal Assistant Services. This platform was called a Leader Forum and it was my job to help him put it together. This experience later enabled me to help establish forums in Laois and Offaly. I could see that this was a man with a rare combination of passion, vision, and stubbornness. He would not rest until he realised his goals.

That September, Martin would lead the biannual Strasbourg Freedom Drive for the second time, and although I couldn’t go, it awakened in me an awareness that issues facing people with disabilities in Ireland are commonplace across Europe. During this Freedom Drive, people with disabilities across Europe convened at the European Parliament with key demands, which invariably included the deinstitutionalisation of people with disabilities and the recognition of the Personal Assistant Service as a basic human right. The slogan for the event was ‘Nothing About Us Without Us.’

I started working with Offaly Centre for Independent Living Ltd in 2008, and thanks to Martin, I had a clear idea of what I wanted to achieve. However, I soon discovered that it wasn’t as easy to motivate others to fight for equal rights. During the recession (that we’ve apparently come out of), a time when ‘cutbacks’ instilled more fear in people with disabilities than any other word, Martin was actively protesting against these cutbacks. He and other activists took the drastic measure of camping outside Leinster House, and their perseverance was worth it when the cuts were reversed.  Just last year, in September 2015, he organised another three day protest outside the Dail where he expressed his disappointment to our Taoiseach, Enda Kenny, on hearing that investments were going to be made into residential institutions.

Martin is a celebrity, and we all loved to see him coming to Offaly. In 2010 he agreed to be filmed as part of a promotional DVD Paddy Slattery and myself made for Offaly CIL Ltd, called ‘My Life with Me in It,’ in which he explained how he established the Independent Living Movement and how he helped Michael Nestor establish Offaly CIL. In October 2011, when prominent US advocate Judy Heumann came to visit us in Offaly, Martin came to meet her, noting the many similarities in the struggles for independent living for people in the US and in Ireland. That day, he introduced me to Judy as a hard-working Trinity Graduate who was passionate about forwarding the Independent Living Movement. It was the highlight of my seven years’ service with Offaly CIL. Despite the fact Martin met so many people every day, he had still taken the time to get to know me as a person and believe in me as a person. I’m crying just remembering that moment!

And in spite of his many achievements, Martin always strove to achieve more. The Offaly Leader Forum (now the Laois/Offaly Leader Forum) organised a celebratory event in September 2015 to mark twenty years of Independent Living in Offaly. While other speakers were maudlin about the past, Martin focused instead on the future, warning us that must never become complacent in our pursuit of equality. Before his passing, he was actively campaigning for the introduction of Direct Payments, insisting that we must believe in our ability to take control of our lives and to achieve our potential in everything we do.

Nobody could accuse Martin of not achieving his potential. And now that he has passed from this world, we have to ensure that his legacy lives on, never for a moment doubting that we deserve anything less than to live with dignity, respect and choice in our own communities.

Codladh go sámh, a chara. You will be missed, but never forgotten. Thanks for everything xx

International Cerebral Palsy Day – 5th October

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It came to my attention earlier, as I was devising a work plan from now until Christmas, that the third International Cerebral Palsy Day will be marked tomorrow on 5th October. And as a CP’er myself, I felt compelled to write a blog about it. (Also, I haven’t blogged in a reeeeeeeeeeally long time. Sorry about that. Writing a novel isn’t as easy as I thought it would be and sucks up a lot of my time these days).

For the uninitiated, Cerebral Palsy is a disability which is caused by damage to the brain before, during or after birth. The condition itself can range from mild to severe, depending on the damage sustained and the part of the brain affected. Cerebral Palsy is a non-progressive impairment and cannot be cured, although medication and speech- and physiotherapy can enable the person to have a better quality of life (apparently, when they remember to do it).

I’m not going to lie to you, though – me being the politically correct little shit that I am, there’s something about an International Awareness Day for CP that makes me uncomfortable. It could be partly related to my reluctance to admit that CP does bring with it annoying limitations such as fatigue, muscle pain and blah blah blah, when I would rather be perceived as being invincible, capable of absolutely everything. It also has something to do with the fact that for the last seven years, I’ve been programmed to believe that disability is constructed by an inaccessible and exclusive society, not one’s individual impairments. So, in other words, your impairment doesn’t matter, but your motivation to challenge injustice does. That’s something I firmly believe.

Another myth I need to shatter is that disability is something that can be overcome. No, it bloody well can’t, okay? I’m not going to wake up in the morning, or go on a pilgrimage to Lourdes and be miraculously cured, and you know why? Cerebral Palsy is not a disease, it’s not contagious. What needs to be ‘overcome’ is society’s obsession with cures, with an almost unnatural desire to eradicate disability/impairment through medical science and technology. We seem to forget that Hitler also had ideas on how to create a disability –free society, which resulted in the ‘mercy killing’ of an estimated 700,000 people with disabilities.

On a positive note, however, some things have improved slightly for people with Cerebral Palsy. If you’ve ever read Christy Brown’s My Left Foot you’ll note how the language the author uses is very much of a certain era; Brown indiscriminately uses words such as ‘handicap’ and ‘cripple’ to define himself, words which are deemed offensive nowadays. Also, during Brown’s darker moments, it is easy to see how his thinking is directly influenced by a society that sees him as problematic, different, and how to a certain extent he’s internalised the negativity of those around him. Nowadays, children with Cerebral Palsy are well educated, are often integrated into mainstream education, and some of us even get the chance to bullshit our way through university (see ‘Why Getting An English Degree Was So Terribly Important’). We have families of our own, we drive, we hold down jobs (albeit with difficulty at times; it can take a person who has CP three to five times the amount of energy to do a simple task that a non-CPer does).

Having said that, I hate the slogan ‘I may have Cerebral Palsy, but it doesn’t define me,’ because that’s balderdash. Of course it does. It makes every achievement more special, be that getting a Masters Degree or buttoning your blouse by yourself. The reality is that many of us CPers work harder than most to gain the same results as someone without CP. My Leaving Cert nearly killed me, and that’s  no exaggeration. I spent two years in constant pain after having my daughter from lifting her and getting up and down off the floor. And if time was wound back, I’d do the same again, but there’s no denying that the extra demands I put on my body took its toll. Furthermore, if I’m honest with myself, that’s why I stepped back from a traditional job in favour of writing: at least this way, I can work to my own schedule and rest when I need to. (Not to say that I don’t intend on going back to work, but I’d be lying if I said I didn’t enjoy the freedom to work as I do now. Ironically, though, I’m working more than fifteen hours a week on my writing now, and I’m not as tired as I used to be. Funny that).

Oh, and I’m also obliged to tell you that as International CP Day is a ‘thing’ now, presents are customary. Don’t worry, it needn’t be anything major. Twenty euro in a card or a box of Milk Tray will do just fine.

 

The Elusive Word – Poem

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Words? words? Where are you? I can see
Your shadows lurking behind that great big wall in front of me,
Whispering and giggling like schoolgirls in the yard,
Can’t we just be friends? Must life be so hard?

Words, oh words? Come out, come out to play,
I’ve only a short time frame, I’ve not got all friggin’ day,
So let us all cooperate and jot down a line or two,
Why can’t you be as kind to me as I have been to you?

WORDS? Come on now, I won’t chide you again,
You better come quick smart when this paper meets my pen,
You were so excited when my bum cheeks hit the loo,
And now there’s only silence – WHERE the **** are you?

Fine, then. Be like that. No, really – I don’t care!
Stay away forever! Only come back if you dare!
It’s not as if I hope to depend on you for a living,
And that when you come skulking back, I’ll always be forgiving.

Words, I know you’re in there, but please, do not leave;
Perhaps a good night’s sleep will grant me some reprieve?
I know we fight and argue, we don’t always agree,
But we work so well together, don’t you think, you and me?

Words, just come back – I want us to be friends,
We can talk it over, I want to make amends.
Please don’t make me write a shitty poem just for the sake of writing,
Otherwise people will likely guess that we’ve been fighting.

Oh crap. Oh well, tomorrow’s another day,
Let’s hope by then my dear old muse can think of things to say.

In Memory of Veronica Guerin

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‘This is Irish journalism’s darkest day. For the first time, a journalist has been murdered for daring to write about our criminal underworld and daring to chronicle the lives of the brutal people who inhabit it.’ (Aengus Fanning, Irish Independent, 27 June 1996)

It has been twenty years since Sunday Independent journalist and mother of one, Veronica Guerin, was gunned down and brutally murdered on the Naas Road. Even though I never knew her, I think about her on her anniversary every year, and as an aspiring journalist I find myself asking the same question: was Veronica’s murder, described by the late Aengus Fanning as ‘an attack on democracy’, an act of bravery or sheer naivety on Veronica’s part?

I was twelve years old when the news of Veronica’s murder was reported on the six-one news on the 26 June 1996. I remember how my mother put her hand to her mouth and my father shook his head in disbelief. Even though I had no real interest yet in the nitty-gritty of Ireland’s politics, I knew that this shooting was significant. The images of the bloodied, smashed up car will stay ingrained in my mind forever. It was the first time that I’d ever heard of a journalist being targeted in such a brutal way, and the first time I’d considered that being a female journalist could be dangerous.

Two years later I would sit up way past my bedtime to watch a documentary detailing the extent of the drug problem in Dublin. I saw images of people shooting up in broad daylight, some who had committed petty crimes in order to fund their addiction. Some of them were in their early teens just as I was. This was my first introduction to what the sordid world of heroin and cocaine addiction looked like: needles everywhere, people sitting in their own excrement, so high on drugs that they barely knew what day it was.

Drug addiction and supply were still widespread problems, even after Veronica’s murder, but at least the problem had been thrown into the consciousness of the public who could no longer hide behind the predictability of their everyday lives.

Veronica was not merely a journalist, she was also a wife and mother. Bringing a child into the world is a great responsibility and protecting them from evil is an even greater one.   I’m a chicken. My writing is important, but I wouldn’t be willing to risk the safety of my child over it. But ironically, Veronica was most likely thinking of her son and trying to ensure that he wouldn’t grow up in the same horrible culture. Sadly, in trying to protect her son, Veronica became the target of three shootings (one through a window at home, one gunshot wound to her leg and the fatal shooting through the window of her car on the Naas road).

Indeed, there is much debate as to whether her actions were heroic or plain ridiculous. Emily O’Reilly, writer of Veronica Guerin: The Life and Death of a Crime Reporter was accused by many critics as deliberately setting out to sully Veronica’s name in the name of professional jealousy. In her book O’Reilly challenges everything that we know and believe about Veronica. She says that Veronica lied about her age in order to be  accepted into the Ogra Fianna Fail, and points out how she was accused of fabrication when reporting on the Bishop Comiskey Case. In addition, Veronica is depicted as being selfish, putting her career before the safety of her child. She continued to write despite being repeatedly targeted by gang members, even after John Gilligan *allegedly* threatened to rape and kill her son.

However Cate Blanchett, who played Veronica Guerin in the movie of the same title, says that such criticism of Veronica is too harsh, and in an interview she pointed out that being ‘a female journalist, the questions of her as a wife and a mother [such as] ‘how could she do this’ were asked in a way that wouldn’t be asked of a man.’

Veronica is now dead twenty years, and her husband Graham Turley observed in a recent interview with the Irish Mirror (published on 8 May, written by Blaithnaid Murphy) that: ‘Twenty years down the road we are back to stage one. It is getting to the stage where there is literally a shooting on the streets every day of the week.’ Drug abuse in Dublin City centre has again reached an all-time high to the point where the provision of safe injection centres and the legalisation of cannabis are slowly creeping onto the political agenda. Despite Veronica’s efforts, there is more focus on the petty criminals rather than the drug dealers who are undoubtedly profiting massively from the sale of these drugs.

So, if this is the case, was Veronica’s death in vain, or more to the point, did she bring about her own fate by playing with fire? I don’t think so, to be honest. If we really believe that it was partly Veronica’s own fault that she was murdered, we essentially exonerate her murderers of full responsibility for their crimes. Unfortunately, we live in Ireland where we typically try to understand the motives of those who break the law. On the whole, we try to see the best in people, including those who commit such despicable crimes.

True, Veronica Guerin may not have been perfect, but at the end of the day, she was the victim of the greatest crime there is – murder. Her methods may have been invasive and unorthodox, but she was still trying to do her job. Perhaps she did take on more than she could handle, but she paid the ultimate price. And her legacy will live on through her family, her articles, television documentaries and films, reminding us that drugs will always be a problem in Irish society unless we find a way to disempower drug barons and provide proper rehabilitation options for recovering addicts.

If Veronica’s life and death has taught us anything, it should be that the efforts of one person really do matter, and that if we join together and create a unified front progress, however slow, will eventually follow. But this won’t ever happen if we sit back and do nothing.

RIP Veronica, and thank you for trying to make our country a better place for children like yours and mine.

How writing saved my life

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It’s on days like today, when the house is quiet except for the squeaking of my swivel chair and the hum of the washing machine that I wonder whether it was such a marvellous idea after all to hand in my notice and quit a job where, if I’m honest, would’ve kept me forever as long as I did my job and didn’t cause too much trouble.

And, to be fair, it wasn’t a bad auld job either. I did a bimonthly newsletter. I loved working directly with our clients. I did booklets, a film documentary, a fashion show, even a twenty year celebration event. By the end  of it I was left wondering what else I could do. I was out of ideas, and I didn’t want to waste their time and my own plundering along with nothing to show for it. Not good for the company, or my ego.

Indeed, they say that a lot of the reason that people write is for a good ego massage, and being honest that’s true. There’s nothing that makes me smile more (apart from my husband and daughter, of course) than seeing nice comments under my blog or the likes flying in on Facebook and Twitter. (Yes, everyone,  there’s a subtle hint in there somewhere – can you find it? I need your approval as much as I need oxygen)

But writing can also be therapeutic. It can help a writer make sense of himself/herself and his place in the world. It’s often a medium through which thoughts can be transferred through the safety of a piece of paper or computer screen, without having to face people, without the (immediate in my case) fear of being misunderstood.

I wrote here before in a blog called ‘Facing my Demons’ (9 December 2014) about the agonising time we had after having Alison, about how we were closely scrutinised, how we felt alone  and how we could tell no-one how we felt or what we were going through. Unfortunately, this contributed to me developing Post-Natal Depression. Feelings of anxiety, inadequacy, hopelessness? Definite signs of PND. Did I go to the doctor? No. Tell anyone the full truth of how I was feeling? No. That would’ve been the sensible thing to do, wouldn’t it? The fact was that I didn’t know how exactly to describe these feelings when I didn’t understand them myself. After flying off the handle one night, and leaving home, vowing never to come home again, I realised that I needed help. But I’d had counselling before, several times, and the experiences were largely negative. I didn’t feel I could go and tell a stranger my innermost fears. They would judge me, maybe think that I was an unfit parent.

Instead, I took two months off work, and within a week I was already starting to get bored. So I took out my laptop and starting typing out the first thing that popped into my head, much the same as I did when I started writing at the age of seven. No filters, no censoring myself. The words just flew out, like long-term imprisoned dragons celebrating their freedom. Seeing how I felt in black-and-white in front of me made me feel complete. This was me, and how I felt. It wasn’t disgusting, it wasn’t abnormal – in fact it was normal and understandable. Taking ownership of those words made me feel like myself again. When I started the exercise, I thought that I had reached thirty without achieving anything much, but when I read back how I’d been to college, held down a job, got married, had a daughter, lost my mum, been terrorised out of Portlaoise, a lot of things began to make sense, and I started to truly understand who I was and how much I meant to my daughter and husband, and my family and friends.

I’ve been out of ‘official’ work for a year now, and like every mother up and down the country I’m racked with guilt. You feel guilty if you are working, and feel guilty if you aren’t – you can’t bloody win, can you? (Well, I am working, I’m writing a novel. If you’ve seen the Family Guy sketches where Stewie asks Brian how his novel is going, you might appreciate how it feels to be me on a daily basis.) But I am happy. I’m determined to make a writing career for myself. And I have to stop comparing myself to others and instead remind myself that I’ll get there in my own time, and also tell myself that I’ll get another job, at some stage.

For now, however, my main job is to stay well and to be the best mum I can be to that beautiful rascal of mine. And it’s a job that I love and that I take more seriously than any other job I’ve ever had.

In Memory of an Inspirational Hero

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I absolutely despise the use of the word ‘hero’ when describing a person with a disability.

I find the term irritatingly patronising and often inaccurate. British Comedian Laurence Clark is making a living by challenging the notion of the ‘inspirational disabled person’, reminding people through his routine that we (people with disabilities) do not need to be congratulated by strangers for achieving the everyday things that other people do on a daily basis, such as going to college, getting married and having kids. In fact, he is so passionate in his refusal to be labelled an inspiration that he named his 2012 stand-up tour ‘Inspired’ and voiced his desire to be recognised as a ‘normal’ person who does normal things.

As a person with Cerebral Palsy myself, I can appreciate how annoying it is when people  have low expectations of you as a disabled person, but I must confess that even I have my heroes. And this particular man, who has been dead twenty-one years yesterday (14 March), has made such a lasting impression on me, even though I’ve never met him, and obviously never will.

His name? Ed Roberts.

I wasn’t going to write this blog because I didn’t want people to think I was dull or lame, but I’ve read back my previous blogs and I think we’ll all agree that that ship has sailed. Ed Roberts was known as the ‘father of the Independent Living Movement’, and it is down to his collaboration with other activists during the 1960s and 1970s that many of us enjoy a Personal Assistant Service today.

When I used to spend days researching the history of the Independent Living Movement, what struck me was the lack of progress for people with disabilities prior to the 1960s.  Just twenty years beforehand, people with disabilities were being murdered en masse by the Nazi regime (it is estimated that 700,000 disabled people were murdered during World War II). The 1960s, however, was a ‘radical’ period of social change, when people in America started to speak out against injustice, and marked the start of women and ‘black’ people as they were known starting to take radical steps to achieve equality.

Ed contracted polio  in 1953, at the age of fourteen. He never recovered, and was essentially paralysed and left dependent on an iron lung. As time went by, he could spend time out of the lung using a technique known as ‘frog breathing’.

 Given the culture of the time, Ed was deeply ashamed of his newly acquired disability and stayed at home, completing some of his high-school education over  the telephone. His mother eventually forced him to go back to school for a few hours a week, and Ed learned that being different was not necessarily a bad thing. He began to see himself as a ‘star’ and wondered how he could use this to his advantage.

Like many people with disabilities, even today, Ed and his mother Zona had to fight so that Ed could complete his high school diploma. The school initially refused to award Ed his diploma because he couldn’t get his driving licence or do PE. This decision was overturned after much protest from Ed and Zona. Ed then decided that he wanted to study at the University of California in Berkeley, and was famously told, ‘We’ve tried cripples before and it didn’t work.’ Eventually he was granted campus accommodation, a small wing of the university hospital, the only place that Ed could put his iron lung. Ed agreed on the condition that the space was treated as a dorm, not a hospital.

Ed’s admission into the University paved the way for other people with disabilities to stay on campus too. They formed a group, dubbing themselves ‘The Rolling Quads’ and started enlisting the help of ‘attendants’ (now known as Personal Assistants) who they recruited, trained and fired themselves. This was a radical concept – disabled people directing their own services. Ed referred to it as ‘cripple power’, and the idea of the person with the disability directing services remains central to the Independent Living Philosophy. Ed helped to open the first Center for Independent Living in Berkeley in 1972.

As you can tell, I’m fascinated by the Ed Roberts story, and always have been. He was one of the pioneers of a service that I, and so many others, enjoy today. Yet in spite of positive progress in Ireland, namely the opening of Dublin CIL in 1992, many people with disabilities in Ireland still live in fear of their Personal Assistant Hours being cut. Many are institutionalised in their own  homes, having a service only to help them up out of bed and put them back into it. Ever since the recession hit Ireland, the concept of empowerment has disappeared and instead we are left to prove, time and time again, that our PA services allows us to live, not just merely exist.

And for me, that’s why I will always try to honour the memory of Ed Roberts – not because he was some absolutely godly man who is my inspiration, but because he was an ordinary man who was prepared to fight for the ordinary things that sadly, many people with disabilities still can’t afford to take for granted – PA Services, education, employment. The only way to achieve true equality is to come together and shout loud to make ourselves heard. We must be Ed’s legacy so that our children can be ours.

To me, Ed isn’t just inspirational. He is so, so much more than that, and deserves to be remembered as more than that. He and his colleagues gave us the opportunity to pursue our dreams, live in our own homes and have our own families. Above all, he taught us never to accept the status quo, as equality will never be achieved through complacency.

Grieving and healing

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‘They say time’s supposed to heal you, but I ain’t done much healing,’ are the lyrics that most struck me when I heard Adele’s new song ‘Hello’, for the first time. They certainly aptly describe how I feel about the fact that I, like so many other people across the country, didn’t manage to get tickets for her upcoming concerts in the O2 and in Belfast in spite of trying to phone Ticketmaster from 8.30am onwards on Friday 4th December (God loves a trier, right?) and reports later revealed that tickets had sold out within five minutes of going online. I won’t lie. I was gutted, but later made light of it when I offered my kidney in return for Adele tickets on Facebook (that offer’s still there, by the way. Message me here, on Facebook, on Twitter… whatever suits).

I’m just about over it now. If only real grief was so easy to deal with.

Today will be the seventh year I’ve marked mum’s birthday without her. Seven years. I’ve counted it up a few times because I still can’t believe she’s been dead for so long. She’s been dead for six and a half years. I haven’t had a proper conversation with her, touched her face or heard her voice in nearly seven years. Breaking it down like that fills me with panic, because when she first passed away I thought that I would be unable to function without her. I didn’t think I could. At the start, there were days when I would go to work in jeans and hoodies. There were other days when I couldn’t face going to work, or eating, or doing anything remotely productive. Then there were the constant thoughts. My last words to her were not ‘I love you’ or ‘Thank you’… (It annoys me that I can’t remember what they were, but I know they were nothing remarkable). If only I’d known how sick she was, I would’ve, could’ve, should’ve… What were her last thoughts, was she scared/happy/sad…? I was consumed by these pointless thoughts for nearly two years, and they nearly destroyed me. For my own wellbeing, I’ve learned to let them go.

In an attempt to ‘get my act together’, I reluctantly agreed after three months to go to the Parish Centre in Tullamore for counselling. Bless them, they were nice, but the lady I spoke to spent most of the time asking me about my disability. ‘Right, so, you feel guilty because you didn’t get to say goodbye to you mammy… here, tell me something, do you dress yourself in the morning? Aren’t you great?’ At the end of the session I lied and said that she had cured me of my grief and I didn’t need any more counselling sessions. In fairness, the bizarre experience did cheer me up for a while (purely because it was like it had happened in a parallel universe), but then I found myself facing my own feelings again, and I didn’t like that. So instead of dealing with them, or at least acknowledging that I had them, I decided it was my job to look after everyone else. (I genuinely love looking after others, don’t get me wrong). Is Laura okay? Is dad okay? Is Stephen okay? Is Alex okay? Is John Paul okay? Are the goldfish okay? I took on as much as I could in order to avoid coming face-to-face with the gut-wrenching pain that was losing my mother. This wasn’t their fault, and I was more than happy to do it, but my obsession with their well-being became a tad unhealthy to the point where I couldn’t decipher what I felt myself.

Even when it came to selling our family home, two years later, I remained steeled against falling into sentimentality. We had to sort through all of our mum’s stuff, which was the hardest thing I’ve ever done (you know, apart from losing those Adele tickets). I tried to be practical and sort everything into ‘valuable’ i.e. jewellery, handwritten books, her drawings and paintings, photos and ‘crap’ i.e. keyrings, pencilcases, receipts, empty notebooks. Us three girls did this together and Laura and Alex started reminiscing. ‘Aw, remember when mum wore this? And the day she bought that?’ I walked out on one particular occasion. I didn’t want to remember. As far as I was concerned, mum had been dead two years and grieving time was over. I had to move on with my life. I wasn’t going to get sucked into the past again. It was too painful. If I had to talk about mum in the past tense, it would mean that she was truly gone, and I wasn’t ready to acknowledge what that meant yet.

Fast-forward three years, to 2014. Much had changed. I had my own daughter. We lived in our own house. Everything was good, brilliant even, when suddenly I started to feel a grief so intense it felt like it was choking me. I’m not sure whether it was the passing of a family member in April 2014 that triggered my grief, but I felt the loss of my mother as strongly as the day she was buried. Every part of my body craved her, to see her, to hear her, to have her meet Alison. I felt lonely for her. I wanted to chat to her. This was nothing new, usually these feelings would pass as the days wore on. They didn’t this time; in fact they intensified. ‘To hell with this,’ I thought, annoyed, ‘I have a child to mind. Cop yourself on.’ But I couldn’t. Ignoring my grief wasn’t going to work, not this time. It got to a point where I could barely face getting out of bed. I forced myself to take time off work to recover and embrace these feelings. It was difficult but I learned so much about myself during this time. I learned that I tend to take on too much, that I become overwhelmed too easily, and that keeping things bottled up comes back to haunt you eventually. But equally I realised that I was stronger than I thought, that I had somehow managed to keep things together and that I would eventually regain the ability to do these things again once I took the time to take care of myself emotionally.

When I first read about the five stages of grief, I thought that the grieving process would be over once I’d entered and ‘completed’ each stage (the stages are denial, anger, bargaining, depression and acceptance). I imagined the ‘acceptance’ stage as some sort of finishing line where I would be able to think of my mother without bawling like an idiot. I thought that it would be like the ending of a Disney film – soppy and sentimental, but over. Some days I think I’ve conquered this grief, but in the last twenty-four hours I’ve heard ‘The Fairytale of New York’ twice and I’ve cried in public, twice. (Once was at an office party so hopefully my colleagues just thought I was pissed.) My mother once told me that ‘Fairytale’ was her favourite Christmas song, so every time I hear it my soul wells up with sadness that I try to suppress. Sometimes I can do it, other times I fail miserably.

I’m not an expert but from what I’ve experienced over the last six years, and from listening to others’ experiences of grief, it is a process that never ends. Although I’ve had to learn how to function without my mum, it doesn’t mean that I don’t miss her, and I still shed a tear or two at the most inappropriate times. And though it’s not convenient, it feels somehow liberating to acknowledge and embrace these feelings when they arise instead of trying to push them down all the time.

I guess what I’m trying to say is: mum, I love you. Some days I think of you more than others, and there isn’t a day that goes by that I don’t miss you. I won’t be able to contain my grief all the time, but hey, I’m only human. All I can do is try my best to make you proud every day. Happy birthday. Big hugs. I’ll have a Knickerbocker Glory in your honour (I’ll do what I have to do).

 

PS Seriously lads – those Adele tickets – all prices considered. All unnecessary organs up for grabs.

A little bit of me.

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My dad and I almost came to blows yesterday. He loves my blogs, but thinks that many of them are too disability-focused. ‘It’s not all there is to you,’ he said  while I sat there with my lips pursed tightly. What kind of armchair disability activist would I be if I didn’t write about the discrimination facing people with disabilities on a daily basis? I asked defensively. After the urge to have an Ali-style tantrum (she’s three, I’m thirty-one) subsided, I decided to select a few random facts to divulge about myself to you, dear  reader. You can thank my dad.

  1. I’m a Taurean, so by nature I’m a teeny weeny bit stubborn. I was also born in 1984, the Chinese year of the Rat. Incidentally, my biggest fear in the whole world is rats. I mean I would rather die than come face-to-face with a rat. The scariest book I’ve ever read is 1984 by George Orwell solely because Winston was tortured into submission by rats. (Freaky coincidence, no?) Mum fuelled my irrational fear of rats: one day she was taking me off the school bus and a rat darted across the garden, making mum scoop me up in her arms and sprint to the front door. We sat on the kitchen table until 10pm that night, when mum had installed the sonar system. But I’ve never felt safe since.
  2. I’ve always loved reading and writing. I started writing poetry when I was eight and decided that it was a sensible career choice. I imagined myself on the side of a mountain somewhere, hair blowing wildly in all directions, jotting furiously in a notebook. When I was ten I won a poetry competition for a poem I wrote called ‘The Conceited Man.’ I’d come across the word ‘conceited’ while trawling through the dictionary one day (as you do) and knew I had to use it somewhere special. On the night that I collected the award I had to read the poem aloud to an audience of four hundred odd people, and it included the line ‘My dad’s a boaster’. Neither of my parents had heard the poem before and I could see them in the audience with gritted teeth as I recited it. It’s unlikely that anyone else understood me, but the folks heard every word. I spent the next ten years fobbing off people who asked for copies of it.
  3. On a related note, I can often get away with cursing under my breath because people can’t make out my speech. Except with my husband. That man hears  like a bat. Well, I can’t get away with it anymore, now that I’ve told you all. Whoopsie.
  4. When you think ‘woman’, you might be inclined to automatically think ‘shoe shopping’. Not the case with me, shoe shopping is my worst nightmare. I can’t wear heels, pumps, uggs, open-toe or strappy sandals. Which means that I either have to buy really crappy shoes from Tesco or clumpy granny shoes #sexy. I wore heels to my school grad and everyone thought I was wasted. If only I had been but being supervised by teachers doesn’t really scream ‘relaxing drinking time’ to me.
  5. I have a large brown mole on my left shin which is a birthmark and the only time I remember it’s there is when we go on a sun holiday and I have to cover it up. I may get it removed…that’s what I’ve been saying for the last ten years. But if I ever get abducted, this birthmark could help to identify me and save my life.
  6. I’ve spent the last couple of months trying to establish a writing career, but I’ve decided if it doesn’t work out I am going to dedicate my life furthering my research into the long-term benefits of chocolate. Well, someone’s gotta do it, and I’m more than willing to volunteer. I’m selfless like that, me. And if there are clinical trials involved, well… count me in. Seriously, my addiction to chocolate is embarrassing. If there’s not at least two bars of it in the press I begin to hyperventilate.
  7. I got away with not buttoning the two top buttons on my school shirt for six years. Still, I’d rather do a hundred buttons than face a single rat.
  8. I don’t wear or own makeup. I tell people it’s a coordination thing, but actually I’m just  too lazy. Showering is effort enough. And time is a precious commodity, my friend. I’m so busy doing my high-powered job (writing) that being clean is more important. Plus there’s no point in expensive makeup when there’s a three year old in the house – this lesson was sorely learned when she got her hands on my expensive perfumes. She smelt like she was going on the pull to the Bridge House.
  9. I don’t drink anymore. All it does it make me sleepy. I’ve never done anything remotely funny when drunk, so what’s the point?
  10. When I was ten and in fourth class, I told everyone that I was going for a major, life-changing operation that  would possibly cure my Cerebral Palsy. Bless them, my classmates believed me and went to impressive efforts to make me a box of goodies to make sure that I wouldn’t get bored in the hospital when I was recovering. Of course, it wasn’t strictly true: I was booked in for a botox injection that would loosen the muscles in my right calf, thus helping me to walk better. The injection was administered within ten minutes and I was discharged on the same day and back in school two days later with no crutches, no wheelchair and no casts, not even a measly scar. And then I wonder why people think I’m overdramatic.
  11. When I was in Transition Year I wrote a play called ‘Waiting for Anna’ which was performed by my fellow classmates. I went to an all-girls school, so some girls were cast in male roles. They were not impressed but they managed to be true to their characters. When rehearsal began, most didn’t realise I’d written it which led to some interesting insights into what they really thought of it. To be fair, they were gentle, but it was then that I realised that having a fragile ego as a writer would work to my disadvantage.
  12. Every time I chide my beautiful daughter for not eating her dinner, I have to remember that I only ate sausages and Micro Chips for dinner for until I was ten. I refused spag bol, lasagne, pizza, potatoes, veg, boiled rice, sauces of any description and stews (except mum’s sausage stew). Now I can’t eat any dinner without veg. So any mummies with fussy eaters out there, don’t despair: there is hope. Your child will be  fine.
  13. Two foods that I will never ever eat are eggs and tomato ketchup. The egg aversion was the result of a dodgy breakfast when we were on holidays in Galway when I was about five and Laura was a baby. Dad had cooked eggs and you could smell the sulphur down the street, and the memory of the smell is still potent. I’m not sure why I hate ketchup, but the smell of it turns my stomach. So much so that on my communion day, when the waitress unwittingly lobbed it onto my plate, I had a shit fit in the middle of the Bridge House and refused to eat my dinner unless the hotel would provide me with a fresh dinner on a fresh plate, and a clean set of cutlery. Also crisps, of any description: I think it’s the fat and the saltiness. My parents are so proud of me.
  14. Finally, I’ve had stitches put into my head twice. The first time was when I was swinging around in the playroom with my friend Aoife and one of us let go and I whacked my head off the window ledge. The second time I was fourteen and in Lourdes singing with a group of people when I fell over and whacked my head. I barely remember being bundled into  a wheelchair and being brought back to the hotel. My poor mother back in Ireland was half-angry, half-hysterical. Actually I’ve taken a lot of whacks to the head. My poor, damaged brain.

So yeah, that’s me, warts and all – the face behind this blog. Please don’t unfollow this blog and I promise I will send you chocolate (you know, if I haven’t eaten it first).

Ten smartarse answers.

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When I took time off work to write, I committed myself to writing an interesting blog three days a week. As you can see, I haven’t yet managed to deliver on this yet (but I have been writing behind the scenes, I swear-the results will be ready in twenty years’ time). When I’m not writing or doing laundry (seriously, there are only three people in this house – where does it all come from?!) I spend my time dossing around, window shopping or doing some errands. And it is rarely mundane, because invariably somebody comes over to me and asks questions that are inappropriate, strange or just plain rude. Recently I’ve started to wonder how people would react if I actually answered these questions with the first thing that popped into my head. I’m sure I would not be popular at all, at all, at all.

Question/statement 1: Are you on your own?
My answer: Yes
What I’d like to answer: No, I’m not on  my own. This is my friend Mary, behind me. Say hello to Mary. What do you mean you can’t see her? Mary, come on introduce yourself, don’t be shy.

Question/statement 2: Is that your daughter?
My answer: Yes. Isn’t she lovely?
What I’d like to answer: Oh my God did you not see us on the telly? What was the point? I’m mortally offended. And believe me, I’m just as shocked that I’ve managed to get her to three-and-a-half, you’re not alone there.

Question/statement 3: Will I get your purse  out of your bag for you?
My answer: Ah no, I can manage, thanks.
What I’d like to answer: Sorry I’m holding up the people behind me, I have misunderstood the definition of ‘queue’. Please feel free to rummage through my bag. Here, do you have a pen? I’ll write down my PIN code.

Question/statement 4: Do you ever wish you didn’t have a disability?
My answer: No, I’m happy the way I am.
What I’d like to answer: (?!@#’\) No, but I could do without these annoying questions. Now go away, I’m trying to eat my dinner.

Question/Statement 5: I think you’re great, a real inspiration.
My answer: Trust me there’s nothing great about me.
What I’d like to answer: Here is my dad’s number and my husband’s number. They’ve seen me at my laziest. They’ll soon set you straight

Question/Statement 6: It must be horrible, having to use a wheelchair all the time.
My answer: Ah it’s not all the time. It’s just for energy conservation purposes. I still walk sometimes.
What I’d like to answer: Nah, at least I can beat my toddler in a race. Ready, Steady, Go! WEEEEEEEE!

Question/Statement 7: So did you conceive naturally, or did you get help?
My answer: I was just lucky, thank God.
What I’d like to answer: Here is a forty-eight page questionnaire about your sex life. Don’t worry, your information will be kept private to myself only. I’m just curious, is all.

Question/Statement 8: Do you wash and dress yourself in the morning?
Me: I do indeed.
What I’d like to answer: Yes I do wash and dress myself,  do you? Oh yay, we both deserve medals! Because obviously the ability to wash and dress oneself is the most accurate way of measuring one’s value to society, and Stephen Hawking ain’t all that.

Question/Statement 9: Can you cook yourself?
Me: I can, and I’m a good cook.
What I’d like to answer: When I’m not running around with a fire extinguisher or nursing first degree burns, I make a mean microwave lasagne.

Question/Statement 10: Do you live alone?
Me: Well ..no… I live with my husband and child.
What I’d like to answer: Here is my address, and a map of how to get there. I’ll be out between the hours of nine and five.

I’m a pussycat  really. But sometimes I show my claws.