My 2016 Appraisal

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Because I’m now my own boss, I have to monitor my own progress. This can be a disaster. Sometimes I think I’m doing much better than I actually am, while other times I think I have failed miserably at life. So, in trying to determine whether 2016 was a success or a flop, I did what any smart self-employed* person would do: I made a list of my original goals and did a realistic assessment of how I performed and where I need to improve. Here goes:

 

(1)    Get into shape

Ah yes, this old chestnut. I joined Aura Leisure Centre in Tullamore in November 2015 and for a while went twice a week, once a week, once a month… I’m doing my physio twice a week/when I remember but I recently purchased a treadmill which I use at least four times a week. Or I was, until I came down with this horrible virus thing that is doing its best to wipe out the Irish population. I admit the last time I used it was two weeks ago. DON’T LOOK AT ME!

Verdict: Fail, I know, fail. But I’m trying. God loves a trier, right?

 

(2)    Write a novel

I saw how award winning novelist Louise O’Neill wrote two novels in as many years and thought hey, we were in the same class once upon a time, so logically that should mean… Nothing. It means nothing. I will not be publishing two novels in two years, or possibly ever, for that matter. This novel is my baby, so much so that I hate telling people about it for fear that they’ll say it’s unpublishable. I also have to write the middle of it which I’ve been procrastinating by writing shitty little blogs like these.

Verdict: Well, I’ve worked on  the same project for eighteen months, and I haven’t deleted it – that counts for something, right?
 

(3)    Give up chocolate

Yeah, this hasn’t happened. I will be the embodiment of Death by Chocolate. I have zero self-control. In order to be successful at this in 2017, I must somehow get rid of the four remaining boxes of chocolates lying around the house first. Once these are gone, I’ll have a fighting chance. It’s only logical.

Verdict: Fail.
 

(4)    Update this blog regularly:

Firstly, I ask you to discount the first six months of the year. I was blogging elsewhere, on a far less accessible website (all hail WordPress). July and September were not great, admittedly, but considering I’ve been working on a novel as well, I don’t think it’s been too shabby… right?

Verdict: Pass (Yay! Go me)
 

(5)    Find a new job:

(Job as in paying job) No I haven’t done this yet. Bad Sarah. But I have done a job interview skills course and a CV preparation course so, you know… Hopefully in another twelve months… (Of course part of the problem is that I should be trying harder. I know, I know, my husband is so lucky to have me)

Verdict: Meh…

 

(6)    Do a Creative Writing Course:

Yes, I did this, and got a Distinction Diploma in Creative Writing. That’s something I suppose….

Verdict: Pass.
 

(7)    Start driving:

No this hasn’t happened yet, but I’ve passed my theory test, so it’s probably advisable to stay off the road in 2017.
 

(8)    Learn how to cook a meal for the freezer that doesn’t involve mince:

Yup, I’ve done this. Beef stew! (With beef pieces, not mince). And……… shepherd’s pie (oops, that involves mince). I know, my culinary skills are just fantastic.
 

(9)    Cut down on social media:

Aw, but then how would I share my literary genius with you all? I did close my Facebook account for like half an hour. In my defence I permanently deleted my page a few weeks ago, (or so they claimed) but when I signed back in I was back online, no questions asked. I think it’s time to admit that social media owns us.

 

(10)Be the best goddamn armchair activist I can be: 

I’ve passed this with flying colours I think. When I was researching the progress of the disability movement in 2016, I had to look no further than my own Facebook page. It looks like my old job (which included raising awareness of disability issues on social media) is going to take longer to leave me than previously thought. The difference between sharing stuff on my own page and work’s page is that I don’t hold back in giving my tuppence on what I read. I suspect people are bored of me but I don’t care. I’m committed to the perusal of equality for people with disabilities. No more, no less. We’ve also made progress in ensuring that the recommendations as outlined in our Access Review (that is, the Laois/Offaly Leader Forum’s Access Review) has been implemented. I’ve also committed to helping the National Independent Living Movement in any way I can.

 

Overall verdict: Not a bad auld year. Must try harder** in 2017. Happy new year!

 

 

*desperate, approval-seeking writer

**way, way harder

Meaningless rant on a Friday night

I’m upset. And I know deep down when I’m upset that I should turn off the laptop, walk away and root out a tin of Celebrations from the spare room that ‘we’re saving for Christmas.’ But like a fool I can’t do that. I need to get this off my chest.

First of all, I’m upset with myself. I’ve been around for thirty-two years, you’d think with all of the physical and metaphorical knocks I’ve had in my lifetime my skin would be thicker. That stupid comments wouldn’t get to me.

Today, Ann Marie Flanagan, a disability activist from Clare, wrote a well articulated article for thejournal.ie about why Ireland urgently needs to ratify the United Nations Convention for the Rights of People with Disabilities. Unfortunately some of the comments on the article demonstrated the frightening ignorance of some of the Irish population. (I have said ‘some’ twice, I am not making generalisations, okay. Some of you are lovely). Yes, I know, thejournal.ie and trolls are well-known bedfellows. And like the gobshite that I am, I fed the greedy trolls.

One comment that was made was along the lines of ‘You need a PA to get things done and you thought it’d be a great idea to have a child?’ I don’t know this person from Adam, nor he me, but this isn’t the first time I heard this particular line. In fact, the first time I heard this was in the hospital the day after I had my daughter and I was walking to the toilet for the first time after the section. It wasn’t even a nurse that said it, it was an orderly (who we reported afterwards).  It wasn’t any of her business, but we weren’t going to go all angry  crip on her and run the risk of not being able to bring Alison home. Which nearly happened anyway when the head midwife suddenly, for no apparent reason, decided that we couldn’t go home because I was going to be a danger to my baby.

And that moment has never left me. I fought so hard to prove myself before Alison was born, and yet it wasn’t enough. And when I developed postnatal depression afterwards, I felt that I couldn’t seek help in case I accidently revealed some vulnerability and had my daughter taken away from me. There’s an underlying narrative to disability: everything is a struggle. That narrative begins from the day we are born. And I’m so tired of it, I really am.

I’m tired of biting my tongue every time someone comes over to Alison and says to her ‘are you looking after your mammy?’ I know it’s harmless banter, but I’m the parent, she is my daughter. She has her little chores but nothing like a carer’s role. And having a good PA service will ensure it always stays that way. Alison is very much a child, and will always be, because I am her capable mum. I have to tell myself this every day, and I’m sick of it.

I’m tired of explaining my personal choices to strangers, of having to reassure them that I know what I’m doing (I do have a Trinity degree after all) and having to wangle that degree into conversation to gain credibility from them.

I’m tired of the weight of history on my shoulders, a history that depicted disability as a fate worse than death, that it was perfectly okay to control disabled people and their families by denying them the appropriate services in order for them to live independently, which ultimately results in resentment of the disabled person by their families (Johanne Powell being the most recent example of this).

I honestly don’t know if I can change any of this stuff for the better.

But what I do know is that there’s a box of chocolates in the spare room, and while it won’t exactly change the world, at least I’ll go to bed on a (sugar) high.

Halloween Tricks and Treats

I am absolutely exhausted. I keep forgetting that I’m not Martha Stewart and I’ve spent a good part of today baking and making little treats with Ali. JP says that we were making memories, but that’s not what I would’ve called our kitchen circa 3pm this afternoon. Think confined space, sticky gloop and hand grenade. Funny how none of that is captured in those expensive baking magazines, eh? (In hindsight, marshmallow top-hats would’ve sufficed. Making muffins was pure madness, especially for someone who is almost allergic to baking).

Ali was harping on at me for ages to have a Halloween party, but to be honest, I don’t think Halloween is that big a deal. It certainly wasn’t in our day, when the majority of costumes were plastic masks and bin liners (I haven’t seen a kid in a bin liner in yonks). I certainly don’t believe in holding unnecessary gatherings which require cleaning up of any description unless it’s not in my house. We didn’t have Halloween parties, although some of the other children did. They were weirdly extravagant affairs, with material costumes and Halloween decorations.

I remember how I used to almost resent mum for this lack of effort, for this apathy towards what was such an important holiday. She didn’t even let us go trick-or-treating on our own: instead, we were bundled into the back of the car and escorted to her friends’ houses, where we would stay for half an hour at a time. I wasn’t impressed that she would let my older brother Steve go by himself. I remember the really early days, when Steve was still trick-or-treating, emptying our bags, trawling for cash. We’d usually be able to stump up about four pounds and Steve would walk to Egans the next day and buy four hundred penny sweets which would be long eaten before we’d touched all the monkey nuts we accumulated.

I  don’t think anyone in our house liked Bairin Breac, so every year mum would bake two apple tarts (which we sometimes ate after Trick-or-Treating) and hide punt coins wrapped in greaseproof paper. No ring shite for her; she made mauling her apple tart worthwhile. She also bought sweets for the trick-or-treaters, which was rare at the time, and I know for a fact that certain trick-or-treaters changed costumes and visited our house more than once! (Won’t mention names though – the past is the past and all that). And that was Halloween.  No frills, no party games or bobbing for apples. Pretty boring really.

And then one Halloween night, in 2001 to be exact, Dad got a phone call to say that his mother had passed. He looked so forlorn, so lost, and so tired, having only come in from work fifteen minutes before.  Fifteen years have passed, but in many ways it doesn’t feel like it. It’s something that all we cousins remember even now. After all, gatherings at granny’s was often the only place we were all together, and now that was gone. Her wake and her funeral happened during midterm, and us girls went back to school, a little bit emptier.

As an adult, the feeling of loss is what I now associate with Halloween, but as a parent, I want Alison to remember Halloween for the right reasons. I want her to remember fun and happiness, and not sadness. I want her to remember the lengths we went to to decorate, to make treats, to enjoy each other. But sometimes I have to remember to calm the f**k down.

As scary as it is, there’s certain things I just can’t control. It’s taken me a while to learn it, and one day, she will learn it too. It doesn’t mean that I’ll stop trying to make her happy. Although next year, I might just decorate shop-bought madeiras instead. And in doing so, I’ll be teaching her something important: there’s no point in trying to be something you’re not.

The Beauty of Writing a Novel

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

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

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

 

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

‘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

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

 

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.