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.

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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.