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.

#mebeforeableism

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This isn’t going to be a long blog post (I hope). It’s one of these posts that I’m writing solely to motivate myself to do a bit of writing, and to unblock my brain (apparently, ‘writer’s block’ does not exist; I attest otherwise).

There’s been a bit of a shitstorm online over the last few days about the film, Me Before You, which is based on a novel of the same name by Jojo Moyes. Disability Activists have been  blogging furiously, slamming the (mis)representation of disability both in the novel and the film. The disabled character, Will, has chosen to avail of assisted suicide in Switzerland because now that he is paralysed following a motorbike accident, he doesn’t think that life is worth living. And *spoiler alert*, that’s exactly what he does at the end of the novel.

Is it wrong that I want to slap a fictional character across the face and say, ‘Cop the f**k on. You have to use a wheelchair, but you’re not the only wheelchair user in the world. You’re only in your twenties. Ah here?’ Is it wrong to want to slap the other characters for not slapping him across the face?

Over the last few days I’ve read Extraordinary Lives, a book compiled and edited by the Irish Wheelchair Association’s Joanna Marsden (who also edits the Spokeout magazine, a quarterly publication issued by the IWA), which paints some interesting pictures of disability. All of these stories have one thing in common: each person strives to be integrated into a society which sees them as deviant. They challenged stereotypical notions of being disabled and set about removing barriers to integration. They excel, not in spite of their ‘impairments’, but in spite of a society that doesn’t always think they are capable. Many of these people were instrumental in advancing the Independent Living Movement in Ireland.

I’ve been an active member of the Independent Living Movement for almost ten years now, and I worked in the area of Independent Living for nearly seven of those. During this time I saw first hand my fellow disabled activists protesting against cutbacks to Personal Assistant Services. I witnessed the introduction of medical card charges, the cutting of the Household Benefit Package, the scrapping of the Christmas Bonus.

I also watched what was going on in the UK, and what continues to happen: disabled people being refused their Disabled Living Allowance (DLA) because they weren’t ‘disabled’ enough to qualify; people being forced onto Jobseeker’s Allowance (JSA) after being told they were ‘fit for work’ (even though it has transpired that some of these claimants died afterwards either from terminal illnesses or suicide); disabled people being portrayed as ‘scroungers’ because of the benefits they claim,
leaving them to become victims of hate crime.

It has been hinted that Leo Varadkar is going to bring in a similar system over here, despite the negative press it  has received in the UK. Well, good luck to you Leo. I know of so many disabled people who have openly declared themselves as being available for work, and yet still struggle to secure paid employment. I know others who can’t afford to work because they will lose their medical card, making earning money a futile exercise. And you can launch as many disabled employment schemes as you like, but what we really want is to be accommodated in a ‘normal’ working environment, and recognised for our skills rather than offered a tokenistic job for the sake of massaging the unemployment figures. (Many disabled people don’t show up on the live register because they are on Disability Allowance not Unemployment Benefit).

So going back to Me Before You. On one hand it is just a story written by an author, doing her job as a storyteller, telling the story of her characters, one of whom just so happens to have a spinal cord injury. Fair enough. On the other hand, the reaction to it from  the disabled community should highlight how frustrated many of us are as being portrayed by Hollywood as hapless victims with nothing real or tangible to offer those around us. it’s time for us to stand up and show that it’s not that we are not worthy to live in society but rather that society must adapt and accommodate not only our physical needs, but our emotional and social ones too. We must teach people that our impairments do not make us tragic, and to be comfortable around disability.

Me Before You was written by a non-disabled author. Let’s not be afraid to write our own story.

* I feel I should point out that I use the word ‘disabled’ to denote people who are disabled by the society they live in, not their individual impairments.

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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).

Show me what you’re worth

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Value and worth are based on  all sorts of things. There’s material value, namely, the kind of house you own, the kind of car you drive, the balance on your bank account. There’s emotional value, which I think means your support network, the people who are still there when you’re being whingy and clingy and annoying. In today’s fast-paced world, value is obviously placed on the person who can perform the most tasks within a set time frame. Words to describe this person might include dynamic, motivated, driven, dedicated.

From the cradle to the grave, it seems as if life can feel like a great big competition. Babies’ weight and height are constantly compared. From the moment our children start school, there are art competitions, handwriting competitions, sports days. Although our job as parents is to teach our kids that they can only do their best, somewhere along the these kids learn that it’s important to be the best, it’s important to win. Just today, my three and a half year old daughter came home, devastated because she didn’t win a game of musical chairs at playschool. She’s learning that sometimes she loses, that she can’t win all of the time. This is something that I as a parent must teach her, and yet, I can empathise with her. I know what it’s like to lose in a world where winning seems so important.

As the loyal followers of my blog will know (hi dad!) I’m on a six month career break at the moment, and although I am enjoying it, it’s hard as well. We are born into a society where we are taught from an early age that having the best job, the highest paying job is something we should aspire to. As a person with a disability, our narratives are quite different. First we are born, and most of the time our parents are told not to expect too much. If we live past  a week or two, that in itself would be a remarkable achievement. Our parents don’t love us objectively, however; to them, we are everything. They push us through the system, ignoring the derogatory comments, challenging the lack of educational supports, tolerating being called delusional and stubborn. They don’t accept that their children are not worthy of equal treatment, and in turn, as we grow older, we must continually challenge the system too, proving ourselves to be capable, autonomous individuals.

Historically, man’s worth has always been connected with their physical and intellectual strength. During the Stone Age, people with physical impairments were often left to die. During the Christian era, people with disabilities were viewed as objects of pity, as charity cases. Then of course Charles Darwin came up with his riveting ‘survival of the fittest’ theory, a notion that Hitler took very literally as he carried out ‘assessments’ on people with disabilities, where he decided whether people could live or die based on their physical and mental capabilities. Granted, Hitler was a lunatic – few would dispute that – but in spite of how controversial his plan of creating the perfect human race was, sometimes it feels that we haven’t moved far from the idea of equating somebody’s worth with what someone can physically do.

When I was in college studying feminism, we used to discuss something called ‘the virgin/whore dichotomy’. Basically, it was this notion that women were either one or the other, and that in failing to live up to the  ideal of  the perfect virginal woman, they were imperfect, damaged, inferior. I often feel that when a story is told in the media about disability, the subject is either portrayed as being super-inspirational or vulnerable. You know the stories I’m on about (I’ve  written some and been the subject of others), they normally go along the lines of ‘Despite being in a wheelchair and taking ten tablets a day, Joe has managed to learn Chinese and Computer programming,’ or ‘Because of the cutbacks to her Personal Assistant Service, Emma may not be  able to enjoy living independently in her own home for too much longer.’  Stories like the latter are often the only way to highlight how the recession has affected people with disabilities. We sacrifice our  dignity in order to get our point across. And I believe this should not be necessary.

People with disabilities have much to offer society, and they are worth far more than a paltry €30 on a Jobbridge Scheme. All the new plans to create jobs for people with disabilities are laughable because many of us don’t want to be segregated from the main workforce. All we want is equality, which is not the ability to do as much as our peers, but to be recognised as useful, productive members of society.  Hopefully the UN Convention on Human Rights for People with Disabilities will be ratified next year, even as a tokenistic gesture that everyone should have equal rights.

We are worth so much to society, and now it’s time for us to be more vocal and construct our own narratives. There is no  need to feel small and insignificant. Shout loud. Make sure your voice is heard. Don’t let people  make you think that your issues don’t matter because they’re only perceived to affect a small number of people.

We deserve equality, in spite of our limitations. We are worth  nothing less.

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.

Budget 2016: What money can’t buy.

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In less than 24 hours, we as a nation will be picking at the bones of Budget 2016, due to be announced today. I’m sure as always spending increases and cuts will be debated all over the internet. It’s depressing to think of the citizens of this country glued to the TV and Radio, waiting to hear if the Government is going to be generous this year after seven years of cutbacks that have left many families struggling to pay their bills. But as we all know, election time is coming, so I’ve no doubt that serious attempts will be made to dupe the masses into thinking that this  government really cares about the average Joe. I doubt it. Many of us are still struggling to keep our head above water, and the homeless crisis is starting to spiral out of control. And for people with disabilities- well – many of us seem to be stuck in some sort of twisted time warp.

In recent months, there has been some much-deserved focus on the problem of people with disabilities being stuck in outdated institutions, where they are mere recipients of basic care. Many of these people are cut off from their local communities, and have little choice over their everyday lives. Every new HIQA scandal is a reminder that the current model of service provision isn’t working. About 8,000 people, 1,000 of which are under twenty-seven, are now living in residential institutions. I cannot imagine having spent my twenties in a hospital-like setting. I spent my twenties partying my way through college, getting work experience and going on holidays abroad. I chose to get married and have a child.  I live in my own home. As a thirty-one year old woman, I am doing well for myself. As a thirty-one year old woman with a disability, I am living a dream that some of my peers cannot yet access. And it’s not right.

A few weeks ago a man who I have known and respected for ten years, veteran disability activist Martin Naughton, staged a three-day protest outside the Dail and was joined by many colleagues and friends. He urged for this government not to spend €450 million on maintaining and building new residential institutions for people with disabilities and instead  to allow access to individualised payments that would enable us to choose the services we need to live equally and independently. Predictably, the protest ended on a disappointing note, with no concrete commitments made to improving service provision for people with disabilities. According to the group of protestors named the People with Disabilities group, more than 68% of service users are currently dissatisfied with services provided to them. They claim this is because the people who use these services are chiefly recipients of them and do not direct them themselves.

Let me ask you a question – who is more knowledgeable on what I need, me, or a team of medical experts who have had their noses in books for the last six years? Each and every person with a disability knows what they need, and what they don’t need. Every day government money is being wasted on organisations and institutions who claim to know what’s best for us. When you have the privilege of working in the disability sector for over ten years, you see first hand the effects of the cutbacks that were made during the recession. I’ve seen high dependency clients’ hours being cut to the bare minimum, often to take them out of bed in the morning and put them back in the evening. I’ve seen people having to fundraise in order  to have their houses adapted after acquiring disability because the Housing Adaptation Grant is no longer available. I’ve read stories where people are forced to choose between heating and food. Medical Card revocation, stopping the mobility allowance… I could go on and on.

I followed the response to Martin Naughton’s protest on social media and online papers, and of all the comments left on thejournal.ie, Suzy Byrne managed to clearly articulate the crux of the matter. She wrote: ‘We don’t need celebrities patting us on the head – all they usually do is turn up to rattle buckets for us and get pictures in paper. Same with most politicians – this is the problem – disability is not seen as a human rights issue but one of charity. And too many able bodied people benefit from this in terms of jobs and wages and status in society.’ Every year, after the pre-budget submissions and the announcement of the budget itself, there is silence. The media’s focus on people with disabilities tends to involve the words ‘triumph over adversity’ or ‘inspirational’ or ‘vulnerable.’ These articles tend to also use words ‘brave’, ‘courageous’ and ‘heroic’. There is nothing heroic about having a disability, but trying to push past condescending bullshit and trying to perceived as equals who have so much to offer this country is heroic indeed.

And that’s why we need the Government to listen to us, the experts of disability and spend the money (paid by us, the taxpayers – even those who don’t work buy goods and services) the way that we see fit in order to enable us to be truly equal citizens in this country, worthy of dignity and self -respect, not merely rattling coins in charity buckets. All we want is equality, and this is something money can’t buy.

Oh, and if Enda could deliver on his promise to ratify the United Nations Convention of the Rights of People with Disabilities, that’d be just peachy.