My Dystopian Life

Guys, this evening as I sit here on my laptop, I’m starting to seriously doubt myself. When I started writing a novel two years ago now, I didn’t have a clue what I was doing or how to plan it out. And man – now it’s a mess. I can still see merit in the story, and I am a hundred percent sure what I wanted to achieve. But another story has beckoned over the last number of months, and it’s a dark, dystopian fiction (but kind of similar to the one I’m writing now in many ways).

In my fourth year of college I was introduced to the world of dystopian fiction by a professor who urged us to  read the novels and afterwards to question everything, to draw similarities between the fictional work and real life. After all, dystopian novels draw from our history. Look at 1984, for example. The use of propaganda (I.e. Hitler) to brainwash the public into trusting the ‘government’, the deliberate rewriting of history to suit a warped political agenda, the destruction of language so that the ‘proles’ have no means of expressing anger towards the Big Brother regime (any of this ringing a bell? Tuam Babies? Garda Corruption?) These are all ways in which people are worn down and forced into a narrative they do not want to partake in. And of course, rebellious Winston is forced into Room 101, where he is tortured into submission when faced with his darkest fear: rats.

Watching the television adaptation of Margaret Atwood’s dystopian novel The Handmaid’s Tale has reawakened my fascination with the dystopian form, and it’s interesting to watch my husband’s outraged reaction to the show every Sunday and to point out to him, just as we did in Apocalypse Class ten years ago, the similarities between Gilead and the world we live in now. Of course, we don’t live in the nightmarish worlds of these two novels. But I definitely feel trapped in some kind of dystopian nightmare.

I live in a country that is deliberately denying me my human rights, in a world where I constantly have to prove myself in order to have any kind of credibility. A world in which disability is seen as a medical problem rather than a social one. A world where my voice and the voice of many disabled people are dismissed as trivial or unimportant. The problem is that speaking openly and honestly about disability isn’t seen as ‘cool’ or interesting unless your views are endorsed by some random celebrity or politician, who has no idea what it’s like to be viewed as an inconvenience by your own government.

I believe in something called the philosophy of Independent Living. It was originally an American concept, its birth coinciding with other major political movements originating in the US in the 1960s. Basically, many people, including disabled people, were sick to death of being discriminated against and denied their basic human rights. And so they fought. They protested. Above all, they made it quite clear that the only real authority on the subject of disability were disabled people themselves.

Fast-forward almost sixty years, and what’s changed? Sure, things have improved. Access has improved. Disabled people even have careers and families now. But don’t be fooled: these things haven’t and still don’t come easy. We still have to fight, fight, fight.

But what’s the alternative to fighting? What would happen if disabled people sat back and said ‘sure what’s the point? What can we do?’ Well, I’ll paint you a picture, shall I?

If we continue to allow organisations to represent us instead of us representing ourselves, sooner or later we won’t be trusted in our own opinions at all. We won’t ever challenge ourselves and we will become complacent, so much so that we won’t even notice our human rights being stripped away, one by one.

If we don’t actively promote the social model of disability and be adamant and unwavering in our belief that it’s the society we live in that’s the problem, we will always be seen as patients to be improved, fixed or cured, and future generations will fail to acknowledge that there’s nothing wrong with us.

Today, across Ireland, so many disabled people in Ireland do not get a say in what time to get out of bed, when to eat dinner or where they live. Many are stuck in hospitals or in their parents’ homes where they have no control over many aspects of their lives. This is not okay. Please don’t shrug your shoulders and say ‘oh well that’s just the way it is at the moment, what can we do?’

Imagine if you had to justify every single little decision in order to be able to do what you wanted.

Imagine having to prove yourself every single day in everything you do, and be expected to do so with a smile.

Imagine having to downplay your abilities, almost to the point of degradation, and having to expose your vulnerabilities before getting the basic help you need to live independently.

This isn’t a dystopian novel. This is Ireland, right now.

And for many, it’s a scarier place than any fictional dystopian world ever created.

 

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Unproductive Days

Lads, for the last half an hour I’ve been sitting looking blankly into the laptop screen silently willing the urge to write to wash over me. And these are the first few words that I’ve managed. So, instead of marking today down as an unproductive one, I’ve decided to be sneaky and write this blog and mark it as work. Genius or what?

I ‘came into work’ at 9.30pm this evening with the intention of researching an article. That hasn’t happened so I’ll have to do it tomorrow.

When I started writing a novel two years ago, I told myself I’d be finished the first draft within six months. Ha. Hahahahaha. I should’ve been a comedian! New aim is to have it done by this Christmas. Oh, and possibly a play too. And a few more newspaper/magazine articles. And play a part in a major event organised by disability activist group, By Us With Us in September.

What do you mean, these are totally ridiculous, unattainable goals? Well, I’ll show you…

I didn’t manage to write much today. But I did manage to bath my child, bring her to the hairdressers and to a birthday party, complete with card and present.

No, I’ve written sod all. But I did manage to clean and hoover the house.

It’s hard to explain, but when I don’t manage to write, I don’t feel like myself. In fact, I’m grumpier, harder to live with, and sometimes this borders on self-hatred. When I see everything I expect myself to do written down on paper/on the screen I can see how ridiculous it is.

I’ve been pushing myself a little harder lately, conscious that the summer holidays will eat into my writing time. I know I won’t be blogging as much, and that my working week will be at least halved.  I might get one or two days a week to work, and the rest of my time will be my daughter’s. And rightly so.

If you had told me ten years ago when I started and abandoned the novel I’m working on now that I’d be a writer with a handsome husband who supported me and a beautiful daughter who loved to read, I would’ve called you mad.

If you have told me that I’d be totally obsessed with the Independent Living Movement, I would’ve scoffed. I hate committees and commitment and yet both seem to be dominating my life at the moment.

I’m coming up to the third anniversary of the July night that I was determined to end everything, once and for all. If you had told me then that I would come out the other end and start to recover, even like myself a little, I wouldn’t have believed you.

And I think of that Sarah back in 2014, who was struggling to stay together for five minutes at a time, and how thrilled she’d be to have a novel on the go, some freelance work, a little blog and a real opportunity to help people. And not in an arrogant way, I think of how far I’ve come from three years ago, just by taking one day at a time.

Suddenly, not being able to focus and write a few words doesn’t seem like a big deal, because I know there’s  always tomorrow.

And it’s great to be able to believe that.

National Carer’s Week 12-18 June

This week  (12-18 June) marks National Carer’s Week, which is an initiative designed to give recognition to the estimated 180,000 unpaid carers across the country. These people are hailed – and rightly so – as heroic. Many carers have given up dreams of marriage, having a career, maybe juggling caring with raising a family. It’s noble and admirable, yet I find something deeply troubling about the narrative surrounding carers in Ireland.

I probably don’t have any right to be writing this blog.  I’m lucky insofar as my care plan doesn’t currently involve intimate personal care, just help with things like tying up hair, doing buttons etc. I mentioned before that one of the things I value most is my independence. That, and not being labelled a burden.

As a mother of one little girl, I’m ready to plop myself on the couch by eight o’clock in the evening. I love being a mother more than I ever thought I could, but sometimes it can be exhausting – answering incessant questions, doing role plays, going to the park. And this is without having to take care of toileting needs, inserting feeding tubes or anything like that. BUT I would hate to be in that dangerous position where I would view my own daughter more as an object of care than her own little person.

Traditionally, when a disabled person has a child, it is often assumed that the child will take on the role of a carer. Well, let me tell you – Alison has her little chores for which she gets rewarded, but she is not a carer. I have an excellent personal assistant service (not carers) that enables me to be the best mother I can be. I myself direct the Personal Assistant in what I need, and doing so allows me the energy during the day to write pointless blogs like these and spend some quality time with my daughter in the evening. And it allows my husband to enjoy an existence separate from me. I don’t have to worry about him harbouring resentment for me, because I’m not completely dependent on him. We are very much an average husband and wife.

It is harmful to reduce the identity of a person who has ‘high-dependency needs’ to an object of care. Everyone has the right to personal autonomy, to choose how and where they spend their day and with who. I know if I had ‘high dependency needs’ I wouldn’t want my parents, my husband or my child caring for me. I’d want someone fresh, not so emotionally involved, someone who could appreciate my individuality as well as know how to meet my needs. These sort of people are hard to come by. A FETAC Level 5 in Healthcare Support is useful from a practical point of view, but there is a danger that service provision is becoming overmedicalised, with less emphasis on finding out what the person actually wants and more about ticking boxes and providing a basic care plan and often wholly inadequate service.

If this government really cared about the needs of disabled people and their carers, then they wouldn’t dare contemplate cutting the Personal Assistant Hours or the hard-to-come-by Respite Grant. Instead of having a tokenistic approach to unpaid carers by dedicating a measly week to them, the government could alleviate the workload of carers by looking after the needs of the disabled person themselves and, as the late Martin Naughton suggested, allocating them funds so that they (and their families if appropriate) can choose the services they need. Martin called this putting disabled people ‘in the driving seat of their own lives’.

I’ve spoken to people over the last number of years who regard the possibility of acquiring a disability or impairment as ‘a fate worse than death’ and who, like me, would hate to become a burden on their families. But this attitude is a dangerous one. Centuries of conditioning has led us to believe that it’s our impairment that is the problem, and it’s not. It’s the manner in which Irish society and our healthcare system are constructed to make disabled people feel like they’re somehow ‘wrong’, problematic, inconvenient. We are now the only EU member state that hasn’t ratified the UNCRPD. In the UK, disabled people who cannot work are labelled ‘scroungers’ and I can see that attitude creeping in here now. I now believe that positive change is not progressive, and can be undone more quickly than it happened in the first place.

To all of you unpaid carers across the country: I salute you, and keep up the good work. You deserve recognition, not only this week, but every single day. But can I ask a favour? Please join us in challenging the system. Please don’t resent your loved ones for the care they need. They are not at fault. All of our lives would be so much easier if the dignity of disabled people and their carers were upheld through the provision of basic human rights.

 

D-Day

It’s the first day of the Leaving Cert exams, and I can’t stop thinking about my godchild, whose christening I remember as if it were yesterday, going in to sit what she’s been told are the most important exams of her life.

I was listening to the radio yesterday (not sure who – Matt Cooper, perhaps?) who was talking to students on air and generally saying listen – the Leaving Cert is important, but not that important. Study, but don’t stress. It’s not the end of the world. The Leaving Cert is not the be-all and end-all.

That’s certainly not the impression I somehow got when I did my Leaving Cert, fourteen years ago. I did Transition Year the year before, and I had been on a respite break with seven other friends with disabilities during that year (incidentally, that’s where I met my husband). The message I got from that week was that the best prospects for disabled people was in doing a computer course or going to the National Learning Network to do an endless string of courses in job preparation. Has my journey through mainstream education been a waste of time? I thought glumly. Now don’t misunderstand me, or interpret my reaction to be borderline snobbery, but I was afraid that society was trying to mould me into something I wasn’t. These courses are great, but I do think that students with disabilities should feel that anything is possible.

So, as a statement against the status quo, and because I wanted full control over my future, I decided that the only way I was ever going to do this was to get 500+ points in my Leaving Cert (yes, I am a little mentally unstable-how did you guess?) For nearly two years, I threw myself into my studies. I don’t know how I still had friends at the end of it because I never went out to the Harriers or the Bridge House. I don’t exaggerate when I say I spent a solid six hours after school, studying. Soon I became obsessed. If I was going to spend the time studying, I had to be the best. If I got 75% or less in a class test I would openly bawl my eyes out.

I remember my dad saying to me about a month before the exams that if I didn’t slow down, I would have a massive heart attack and be dead before the Leaving came around. He was so worried that he threatened to stop me sitting them altogether. I looked at him incredulously! What did he know? How could he possibly understand how it felt to be the only person in my year with a (visible) disability and so much to prove? Didn’t he know how important these exams were to my future?

No, and he didn’t care. Neither did mum. What they did care about was the fact that I had no friends apart from John Paul, about the fact that I couldn’t relax, or take an evening off study without having a massive panic attack, about the fact that at 12 o’clock they would walk past my room on the way to bed to find me still studying, my books sprawled all over my bed and me panicking because I couldn’t memorise that Irish poem or the ins and outs of the heart in spite of studying all evening, probably on little or no food and definitely no rest (food and rest is for the weak, yo.)

And yet, it paid off. I got enough points (bang-on enough) to get into Trinity to study English (the DARE scheme may have helped a little). The relief was immense; it took a long  time to get used to not stressing out over the Leaving. And just when I became accustomed to calmness, I had my dissertation and exams to worry about! I really wanted an Honours Degree, and I did study just as hard (albeit in the final few months!) and it paid off…

…and now I am a writer, spending day after day writing and researching, blogging and editing. Did I need a good Leaving Cert to do this? Was it worth the hardship? Personally, in spite of the hellish experience that was my Leaving Cert, I don’t think it’s fair or right at this point to be dismissive of its importance. How can teachers, parents, society think it’s okay to spend two years of a student’s life drumming into students that this is the most important exam they’ll ever sit, and then turn around afterwards and say that it wasn’t that important?

Yes, it’s true, no-one ever asks how many points you got twelve months later or (unless you’re an Irish teacher) you’re never asked about the main themes of A Thig Na Tit Orm. And yes, many of us do want our children to have a strong work ethic, but at what cost? Why are we still sending out the message that your worth as a person is based on one set of examinations, and lying to our young people, saying that it could shape your future for the worst or the best?

Because I’ll let you in on a dirty secret: your worth is not how many points you get. It’s how you use your talents to shape the future, be that through medicine, teaching or volunteering to help others. And guess what? Learning is fun – it’s true! I don’t mean school – I mean the learning you choose to do. I’ve done three correspondence courses so far and it wasn’t about the marks, it was about accomplishing little challenges. I loved them and can’t wait to do more.

So do your best in your exams, and spend the summer doing some proper learning. Learn how to cook, how to use the washing machine, how to budget. How to get a week’s worth of groceries for €25 so you can go out on a Thursday night. Meet new people and learn how to tolerate their quirks and annoying habits.

There are no grades, but these are lessons you won’t forget.

And Caoimhe, best of luck. No matter how these exams go, never forget that you are a kind and wonderful person and we all love you so, so much xx

My Literary Inspiration

Sometimes (okay, most days if I’m honest), I find myself asking why bother. Why writing? Why not an office job, a nine to five with a steady income and job security? On days when I have to drag  the words out of my head kicking and screaming, I end up on job vacancy websites, sobbing into my laptop as once again self-doubt, in all its cruel and soul-destroying glory, sneaks in again and does a happy dance in my stomach.

This happened again last night, when I had so much to do and couldn’t settle. I scrolled through the Word document that will be a novel some day (I’m trying the power of positive thinking starting….now) and I watched helplessly as the words seemed to merge into one big blob. I have to walk away when that happens. The temptation to end the struggle once and for all using just two buttons, delete and enter, is much too great when I’m in a panicky, confused state of mind.

But I digress. I got to thinking why I wanted to write in the first place. Louise O’Neill, award-winning author of Only Ever Yours and Asking for It (and, as far as I remember, sat in a few tutorials with me in Trinity- her and Ken Mooney are my claims  to fame) credits Margaret Atwood’s The Handmaid’s Tale (now a major TV series) for igniting her need to write. Incidentally, I’m a Louise fan too, and in particular Asking for It raises some serious questions about how we perpetuate rape culture and how we need to exonerate the victim of responsibility. After all, you wouldn’t ever say that a murder victim was partly responsible for their own demise, would you?

I’m an Atwood fan too, though the book that changed my life was Cat’s Eye, a novel detailing the complexity of female friendship, the far-reaching consequences of emotional abuse by a loved one and the struggle of trying to live with regret. Atwood is the master of description, and in Elaine  she created a complex character who is a product of her past and her regrets. In fact, if I think about it, this is what I’m trying to portray in my character as well.

Another book that changed my life was the text I read for my Junior Cert, To Kill a Mockingbird by Harpur Lee. I had read widely up to that point, mainly for pleasure, and Mockingbird was the first time that I considered that a novel could be a vehicle of promoting activism. Lee’s depiction of the inherent segregation of people in the sleepy town of Maycomb, Alabama and the widespread normalisation of discrimination, demonization even, made me feel cold. As a child narrator, Scout is taught both directly and indirectly, to judge people based on their differences, and yet Lee offers hope to the narrator. Yes, the innocent Tom Robinson, convicted of the rape of Mayella Ewell, is wrongfully convicted and later killed for trying to escape prison, but Scout learns to recognise humanity. In the touching scene where she meets the childlike Boo Radley for the first time, we learn that it is our perception of others that creates divide and not our tangible differences.

I still have nightmares about this last book (by no means the last book to have influenced my writing, but nobody will read a 4000-odd word blog about  it), George Orwell’s 1984. Like any good dystopian novel, the world of 1984 is not too far from the world we live in now. It’s a world in which the inhabitants’ thoughts are not really their own, where there are cameras everywhere, even in private homes, and where news stories are rewritten  to suit the agenda of the State and the real facts are chucked into a ‘memory hole’. Winston, an ordinary working class bloke, starts to question the oppressive regime under which he lives. He lives in a world where he cannot trust anyone, where he is not even allowed the privacy of his own thoughts. The reason why I had nightmares about  this book is because Winston is beaten into submission when he is placed in a room of rats. Loyalty means nothing in 1984, and neither does friendship or compassion. You think and do what you are told to think and do.

Sometimes I wonder whether I’d really be able to write a novel that would have the same impact on others as these three have had on me. Yet that little annoying voice inside says that I have to keep trying, because as far as I’m concerned, it’s better to have tried and failed than never tried at all. Right?!