Questions, questions everywhere

I love writing and reading about disability but I fear that I might have done so much of it lately that it has actually melted my brain into slush. When I look at an article by Dan Goodley or Colin Barnes, my brain shuts down and I refuse to take anything in, which is an enormous concern giving the nature of the course I’m doing (in case you’ve missed it, I’m doing the Certificate in Disability Studies in NUI Maynooth. I must be mad).

But during the Study Skills seminar  we had this weekend, it occurred to me that the reason I’m not taking anything in is because I’m not being critical – I’m reading but I’m not probing, not asking ‘why?’ or agreeing or disagreeing. And when I thought about it, I thought perhaps that’s why it sometimes feels that we’re moving further away from equality for disabled people – because we aren’t asking ourselves (and the powers that be) important questions about topics that need to be discussed in order for us to be recognised as equal. Questions such as:

  •  Who has the authority to decide what you can’t do – you or other people? Do ‘professionals’ always know what’s best for you? Do they always act with your best interests in mind?
  • Who profits from your impairment? I mean, seriously, a set of four wheelchair tyres can cost over a grand whereas a set of new tyres for the car is around two, three hundred Euro. My tricycle, I’m informed is worth about four grand, whereas you can get a state of the art mountain bike for a grand. An adapted car costs far more than the same model of car, unadapted. Why?
  • Why has the head of Irish Rail not been brought to answer a case under the Equal Status Act? If you’re a regular train user you might have noticed that there is a sign saying ‘We comply with the Equal Status Act’ in the wheelchair space. Can that be true if you have to give twenty-four hours’ notice to travel?
  • If a disabled person decides that their primary aim in life is to be an absolute twat, should professionals have the right to comment? To stop them? To safeguard them?
  • These particular questions are addressed time and again without being resolved: Does the Personal Assistant Service exist now as it was originally intended? Should a Personal Assistant have the right to comment on your lifestyle choices? Do they have the right to refuse to enable you to make these choices if they’re ‘not what’s best for you’? Who knows what’s best for you?
  • Should your right to your own Personal Assistant (and the hours you receive) be affected by the availability of a spouse or family member to act as your ‘carer’? What if you don’t get on with your family or they’re just using you as an excuse to claim Carer’s Allowance? (This has happened to people I know).
  • To what extent are we our  worst enemy? How much of the oppression we experience from outside sources is actually external, and how much have we internalised?  And in blaming  ourselves for being disabled, how much power are we willingly handing over to the powers-that-be, that make life-changing decisions on our behalf on a regular basis?
  • Is it dangerous to ignore the realities of impairment, and can we accept our impairments and limitations without handing over powers to the ‘so-called professionals?’
  • What will lead to the defining moment where disabled people can really be trusted to have full control over their own lives and budgets? I mean, why are disabled people being frightened out of trying Personalised Budgets/Direct Payments? Are they really that complicated, or are disabled people led to believe this so that (God forbid) they never truly experience any sense of control over their own lives?
  • If the UNCRPD has been ratified, why has there not been significant investment into Personal Assistance in the 2018 Budget? Why aren’t we building more houses for everyone, including disabled people waiting to move out of long-stay institutions and hospitals?

Achieving equality for disabled people lies in tackling these, and other tough questions. It means never settling, never accepting anything as a given without a logical and reasonable explanation. It means not taking equality as a given when many of us know this is far from the case.

When we stop questioning these important issues, we become complacent. And I think we can all agree that we simply cannot afford to do that.

 

 

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An Open Letter to Taoiseach Leo Varadkar

From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).

An open letter to An Taoiseach, Mr Leo Varadkar,

Dear Mr Varadkar,

I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.

Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.

Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.

In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.

As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.

Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.

I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.

I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.

And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.

Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.

Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.

You owe it to us, our families and our children, to enable us to live the best lives possible.

Yours, etc.

Sarah Fitzgerald

Something Deep Inside

Three years later, I still can’t make up my mind what I want. I really thought that what I wanted was to be a full-time freelance writer, with nothing else to bother me during working hours – just me and my desk. I tell people I am writing a novel, or at least, trying to. So why have I just committed to spending the rest of this year, and some of next year doing Disability Studies in Maynooth? Don’t get me wrong – I have no regrets. It looks like an interesting course and it’ll be handy to have if I ever do decide to go back into employment in the disability sector.

I’ve had a really productive summer (evidently not blogging-wise but you can’t have it all). In February I was co-opted onto the Board of the National CIL which was a huge honour, and I’ve been involved in some interesting and thought-provoking projects. Most recently I attended an Independent Living workshop in Offaly which was facilitated by a fellow activist. The aim of the workshop was to get back to the roots of Independent Living and to reinforce the idea that as disabled people, we are the experts in our own needs. It was a great session.

One of the questions the facilitator asked us was ‘What are the barriers to Independent Living?’ Loads of great answers were given: lack of Personal Assistance, lack of accessible housing and transport. But I, ever awkward and different, gave the answer of ‘internalised oppression’, you know, just for the craic. The facilitator smiled.

‘Big words,’ she said. ‘Would you like to explain what that means?’

‘Sure.’ My hands were sticky with sweat. ‘Internalised oppression is when you come to believe all the negative labels given to you from outside sources.  It’s when you have been told and reminded of your limitations so much that you begin to believe them. As time goes on, you start to place limitations on yourself to the  extent where you hold yourself back from achieving what you are truly capable of.’

I have been involved one way or another in disability activism for the last fourteen years. I have seen people fighting for housing and personal assistance and accessible transport. Any progress in disability rights that was made prior to the recession has essentially been wiped out. (You are free to argue this point; I love nothing more than a good old-fashioned debate). Look, it took Ireland twelve years to ratify the United Nations Conventions for the Rights of People of Disabilities. Yet there is a long way to go before access to Personal Assistance or accessible housing will be recognised as basic rights. We are in the throes of the worst housing crisis this country has ever seen. Many families are living in abject poverty; it was just reported this week that current childcare costs can average twenty percent of household income. As always, the supports needed by disabled people to live independently are considered a luxury.

Is it selfish, given the current economic climate, for disabled people (aka people disabled by our society) to be demanding more? I’m sorry, but I don’t think so. In fact, I think disabled  people have been very accommodating over the last few years. There was barely a whimper when the charges for medical card prescriptions were introduced. The Mobility Allowance disappeared almost without warning, with nothing to replace it. in fact the only time disabled people caused a fuss in Ireland was when James Reilly callously threatened to retract a massive amount of funding from the Personal Assistant Service in 2012. Activists slept outside the Dail in the freezing cold for two nights in protest, and subsequently the cuts were reversed, a momentous occasion in Ireland’s disability history.

And as I watched the entire rotten saga unfold from the comfort of my armchair at home, I felt inspired. Not in a sort of ‘aren’t these cripples so brave’ kind of way, but it was the first time I realised that I had been so blind. It was 2012 and my little girl wasn’t even a year old yet. I had spent the whole year fighting my own battle, trying to prove to so-called health professionals that I was not a danger to my own baby. A year where I demonstrated with grit that I was more than physically capable of raising a child to the many onlookers around me, but then spent my nights lying awake, wrestling with fear and self-doubt, allowing my own tears to sting my face. Would I be physically able to raise a toddler? Would some well-meaning person report me for being a bad parent if I made a mistake? If I was struggling and had to ask for help for whatever reason (not necessarily disability related), would my child be removed from me? And yet, there was hope. People out there were protesting, demanding to be seen as equal. Demanding respect, demanding their rights.

And it was then that I realised that I was my own worst enemy. I was succumbing to fear rather than standing up and questioning the way I was treated and perceived. It took a long time for me to believe that I was a ‘proper’  and capable mother because parenthood isn’t perceived to be the norm for disabled people in Ireland. There’s horror stories and rumours everywhere. Most damaging in my case was that little internalised voice that led me to believe I was incapable.

My friends, I would put it to you that this little voice is the single biggest obstacle to true equality in Ireland. This is the voice that tells us that we are less than, the voice that  advises us not to voice how we feel ‘because no-one likes an angry crip,’ the voice that tells us that if we try harder to conform that one day we might be accepted as equals.

And this is the obstacle to true equality that I predict will be the hardest to remove. Why? Because whether your impairment is congenital or acquired, social conditioning dictates that *you* are different, that *you* must do your best to fit in.

I don’t know for sure at the time of writing this blog whether I want to work in writing or disability, or if (ideally) I get to do both.

What I do know is: Internalised oppression, I see you. I am naming you. And until my dying breath, I will strive (hopefully with others) to always challenge you.

Is Activism A Dirty Word?

Is ‘Activism’ A Dirty Word?

Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.

It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.

Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?

And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?

I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.

About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.

Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.

A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.

‘This is frightening,’ I texted my friend after listening to Kevin.

‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’  And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?

We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!

You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:

‘The only thing necessary for evil to triumph is for good men to say nothing’.

I’d choose activism over evil any day. Wouldn’t you?

Dog tired

Some nights… well, okay … most nights, instead of writing (or as I write) I end up having in-depth conversations with friends over Facebook messenger. Being somewhat of a social recluse when I’m in full-scale writing mode, I think of it as maintaining an important connection to the outside world. We discuss many things, sometimes work related, a bit of banter about upcoming holidays, things like that. And I wanted to share with you one of the things many of us seem to have in common:

We’re bloody tired.

When you’re an activist like many of my friends are, you don’t want to be seen as weak. You’ve spent your entire life fighting for equal rights and opportunities. The last thing you want is to be perceived as less than or worse still, as a moany crip. You know what I mean: someone who brings all of their struggles in life back to the fact that they have a disability or impairment. Someone who’s perceived to do nothing but complain.

I know many people with disabilities who have great careers, lovely families (like mine), are able to drive, maintain a home and, if they’re lucky, a career and maybe even a social life. This is merely a dream for many. Yet in conversation with my friends on a one-to-one basis, they share their deepest fears. Are they losing the physical ability to do the things they love, or will they do so in the future? Will they be able to live independently if Personal Assistance is not available? Will they be perceived to be lazy or passive if they can’t give everything they have, 100% of the time? If they stop fighting, will they lose everything?

I have written before about how I spent most of my life trying to fit in. I remember particularly my Leaving Certificate, and how, even if it killed me, I would get enough points to study in Trinity. I remember the lunacy of staying up until one in the morning, anxious to get no less than 80% in all my exams and essays. I knew I was capable of it, but I nearly paid the price of my mental sanity. But I was so determined not to be defined by my disability that in many ways I rejected it, refusing to believe that I was impaired in any way.

For years now I thought I have been a firm believer in the social model of disability, that it’s society that disables us. And I do believe this: a lack of available housing, accessible transport and personal assistance constantly threatens to deter us from achieving our true potential. However, the reality remains that until these issues are tackled in their entirety, we must try our best to adapt within a society that won’t adapt to our needs. It might mean taking up employment in an inaccessible building, or forgoing the opportunity of job promotions because we can’t afford to lose our medical cards. Maybe it means highlighting our weaknesses and shortcomings so that we can access vital services. Maybe it means languishing in a day centre so that we don’t have to face the deafening echoes of silence at home in our childhood bedrooms or a residential institution.

Sometimes it might mean plastering on a smile so that those around us don’t realise the amount of pain we are in, how exhausted we are or how much effort it took for us to get out of bed that very morning. Because giving any indication of how impairment affects us is a major sign of weakness, right? Isn’t it akin to saying, ‘well, I’m not really equal, and I don’t believe really that we live in a society that disables us? My impairment is my problem?’

No, people – no, this is not what this means. At. All!

The problem is that we live in a society that, when it comes to disability at least, we are brainwashed to believe that our shortcomings are somehow our own fault. For example, prior to being pregnant with Alison, I never used a rollator. In my mind, I never needed one but in reality I was probably constantly falling over. Two days after giving birth, after spending three weeks in a manual wheelchair, I was determined to start walking again, using the rollator at first and then eventually walking on my own as I did before I was pregnant. This was my ultimate goal and it would make me somehow less of a person, less of a mother even, if I didn’t meet this goal. Where was I getting these ridiculous ideas? Mirrored by a society with their stereotypical ideas of what a ‘proper’ or ‘strong’ mother should be? Incidentally, it’s been six years and I never did get to a place where I felt confident walking without the rollator. The medical model of my brain is saying ‘oh, it’s because you didn’t do your physio, you didn’t try hard enough.’ In contrast, the social model tells me that I’ll never be any good to anyone if I’m exhausted trying to do things that in reality don’t really bloody matter!

That’s why, when Alison was two-and-a-half, I decided to get an electric wheelchair. I wanted to be able to bring her for walks in the park, down the canal, walk her to school like a proper mummy. Yet, although I know it’s true that the wheelchair gives me so much more independence, social conditioning sometimes makes me doubt my own judgement. It’s been drummed into me that physical ability, including the ability to walk (which many don’t have) is something which must be used at all times. On the other hand, if I didn’t have it, I would probably not be able to write this blog, have the energy to spend on playing with my daughter or to sit on the committees that I sit on now.

I guess what I’m saying, especially to my friends – those who I’ve spoken to about this at length – is that we need to stop measuring our worth and instead start challenging the ableist society we live in. Can’t hold down a full-time job, or are you struggling to keep up in education? Can’t seem to source a suitable place to live? Perhaps it’s because you’re competing without reasonable accommodations, which isn’t really a level playing field. I’m not saying play the ‘disability card’ and roll over and do nothing with your life, but of course you’re tired. You’ve been trying to claim your rightful place in society for a long time.

So take stock, take some rest and put the fighting gear back on, because the battle isn’t over yet. And take solace in the fact that you are definitely not fighting alone.

PS I apologise for the crappy quality of writing in this blog, but guess what? I’m tired!

Riding on my bike

‘Hello?’

‘Hello, I was just wondering if…’

‘Sarah, your trike isn’t ready yet. We’re still working on it. We’ll call you, promise.’

I felt unreasonable for ringing for the third time this week about a tricycle that up until a week ago, was slowly rusting in my shed. Alison has started cycling in the evenings, and watching her has stirred a hunger in me. Lately, I’ve been feeling a bit rubbish in myself. and I asked myself what made me feel better when I was younger. And the answer was a good, long cycle. It was a time when I was independent, not reliant on others. Free.

I could be getting my dates wrong, so forgive me, but I think it was Christmas 1992 that Santa got me the two things I’d asked for: Matilda by Roald Dahl and a bike. It was a lovely bike, red and white with black stabilisers and a carrier on the back. I couldn’t wait to try it. After the initial excitement of Christmas was over, we brought it down the conservatory steps and I hopped on. I hadn’t cycled six feet when I fell off. Undeterred, I tried again. And again. And again. It wasn’t working.

‘I don’t understand,’ I moaned. ‘It has stabilisers. Why do I keep falling off?’ Truth be known, I think my parents were disappointed as well. We had overcome so many obstacles and barriers and here was one that seemed insurmountable. Perhaps riding a bike was beyond possible for me.

The following summer I was sent for my annual ‘holiday’ in Clochan House. It was as much a break for my parents as it was for me, and it was a thinly disguised regime of physio, occupational and speech therapy. It was also a chance to make friends and have a bit of a laugh without having to answer ten million awkward questions about my disability. That was the week that Dorothy Oakley, possibly the best physio that ever lived, introduced me to the secret lives of the tricycle users.

‘Want to try one?’ she asked with a twinkle in her eye.  Half an hour later, she was panting trying to keep up with me in the hospital car park, ‘Slow down, I can’t keep up!’ I was in love. I knew that, from that moment on, my life would be very different.

Fast forward six months to Boxing Day. ‘Just got a phone call off Santa,’ my dad announced that morning. ‘There’s been a mix-up with one of your presents. The silly sod left it in Cummins’ shed!’

Bewildered, we wandered across the road where my neighbours opened their shed to reveal a red tricycle! Even then I was smart enough to know this wasn’t the work of Santa but rather of my parents pushing the Health board for months beforehand. Up to that point it was the happiest day of my life. Despite the fact that it was freezing outside, I spent the remainder of the Christmas holidays cycling around our patio, imagining I was in the Tour de France. I used it as a ‘taxi’ for my little sisters, who hopped on the bar above the back wheels and held onto the back of my seat. When I started school in the Sacred Heart, I insisted on cycling to school, hanging the bag on the back. I think my parents drove me to school a total of six times in as many years; I even cycled in snow, such was how precious the independence was to me.

By the time I’d finished second year in 1999, my knees were jutting out over the handlebars, but there was no way I was surrendering my independence. I became wary when my dad started to refer to it as a ‘skittery aul’ bike’ but what was the alternative? There was no way I was going to allow Mum and Dad to drop me to school. One July evening, my dad and Uncle Charlie arrived home in a van. It was 10.30 and the sun was rapidly melting in the sky.

Dad called me. ‘Come out here please.’

I was trying to think of what I’d done wrong when the sight of the most beautiful contraption knocked the breath out of me. It was a majestic navy tricycle, with gears and a basket twice the size of the wire ones in supermarkets. I was in love, however, when I cycled it down the road, I was petrified. It was too big, too fast, and I was sure it would be the cause of my untimely demise.

‘I’ll stick with the red one’ I said, nursing the poppy bruise on my shin.

Needless to say, I did not stick with the red one, and why would I? I could carry my sisters in the basket (Or I did until one of the neighbourhood lads asked to be carried in the basket  and buckled the wheel). It took me exactly four minutes to get from our house in Whitehall to the Sacred Heart, which meant that I was often still eating at half eight. I did my Christmas shopping every year on my trike. I hung around Whitehall for hours talking, delighted to have the energy to do so. It soon became my trademark, which beats being a poor, defenceless little cripple.

Unfortunately, when I was in second year in college the tricycle got stolen from our house in Tullamore, and despite gardai reports and appeals on the radio, it was never recovered. I still mourn its loss, but it wasn’t suitable to bring to Dublin. Once I moved back to the Midlands, however, I began to miss it. I moved to Portlaoise in 2007, and ended up staying at home most of the time. I had an old wheelchair but I still missed the trike.

Then a miracle happened, at just the right time: in 2009, a month after mum passed away, I was granted funding for a new trike. This couldn’t have happened at a better time; I had started moping around and hiding away. I started cycling to do our shopping, started spending afternoons in the library, cycling around the park. Our tenure in Portlaoise came to an abrupt end after I was followed home from Caffe Latte in Lyster Square to our house on Harpurs’ Lane in March 2010. This guy, I later found out, was highly dangerous. As I fled from him that day, I glanced at my speedometer – I was cycling at 16mph, and he still caught me. I would’ve had no chance in a wheelchair, I don’t  think.

My trike was instrumental in organising our wedding, collecting bits and bobs – I even brought my wedding dress to be dry-cleaned afterwards on it. It kept me fit until I got pregnant, and sadly after that I struggled to find the energy to get back cycling, until now.

I’m hoping that cycling will improve my physical and mental health, but I’m also looking forward to reclaiming something that makes me ‘me’. I’m looking forward to cycling with Ali and showing her that there’s always more than one way of doing things, if you’re willing to think outside the box.

Be Quiet

Hi all, this is a poem I wrote inspired by the day I’ve had. I woke up this morning and spontaneously decided to go up to Dublin for a few hours (I know, I’m a bad cripple not giving notice). So I rang the train station – no answer. Rang Athlone, Portarlington, Dublin – no answer. Frustrated, I did what any rational being would do and took to Twitter, making a complaint to the @IrishRail page. They never answered, but it was retweeted about ten times, with many in disbelief that because I didn’t give notice that there was a real chance I wouldn’t be on the train.

As I watched the responses coming in on Twitter, I started to feel ashamed. Maybe I’d taken it too far this time. Maybe I was starting to cross the  line from well-meaning activist to downright troublemaker. But then it occurred to me that if it was someone else, a fellow wheelchair user, I’d be the first to cause a stink. And that if we don’t cause a fuss, we will continue to be overlooked.

Anyway, Tullamore train station must’ve been notified because, half an hour after my tweet, the kind man there answered and promised me the assistance I needed. I felt simultaneously smug and stupid, and embarrassed to have caused such hassle.

But I am not hassle. I am equal. And I deserve to be treated as such.

Keep Quiet

Sssh
Keep quiet
Don’t make a fuss
All you ever do is complain
Things really aren’t that bad for you people.
Imagine if you had been born
Sixty years ago
You may never have known the outside
Of the four walls of your bedroom.
You don’t realise how lucky you are –
A home, a job, a family –
We don’t need to hear about
How you fought for every little thing.
Contrary to what you read in fairy tales
At night, when you were younger,
One person cannot change the world.
All your anger does
Is make us all uncomfortable

(I cannot stay quiet.
The silence echoes through our small island.
Rights on paper but not in practice,
Lone wolves howling in the darkness.

I dare not stay quiet
When now there is a generation behind me
Who need to know that it’s okay
To point out things are not okay.
I shall never shrug my shoulders
And pretend to be happy with anything less
Than anything less than true equality).

What would be worse than anger is complacency
And silence, shame of causing a fuss.
Going against what we’ve been taught,
That we must be grateful.

Well, I promise to be grateful
When the simplest things are not made complicated,
When I can come and go as I please,
When the words ‘funding cuts’ don’t make me heave,
When I am equal,
And the lion roaring in my soul is quiet.

Film Review: Sanctuary

It’s been over four years since the RTE documentary that I partook in, Somebody to Love, was aired for the first time. At the time the documentary was recorded, I was going through quite a rough patch emotionally, the mental wounds of having been so heavily scrutinised as a disabled mother had not yet healed. Frankly, I had felt hard done by, the victim of discrimination as a result of my physical impairment. But I was soon reminded, when I watched the documentary that however bad things had been for me, they were much worse for other people.

Living in Ireland all my life, I know that the subject of sexual intercourse has traditionally been taboo, especially sex outside marriage and the notion of freedom of sexual expression. But what if you were living in a country where, for you at least, having sex was illegal? What if you were excluded from exploring your sexual identity because of an outdated law that dictated that sexual intercourse before marriage is essentially rape?

Ireland has a tradition of mollycoddling disabled people, and this culture is slow to change. You may not be aware (as I wasn’t prior to taking part in the documentary) that until recently there was an archaic law called the Lunacy Act 1891 (replaced in 2015 by the Assisted Decision Making Capacity Act) that deemed it illegal for people with intellectual disabilities to have sex outside marriage. This meant that it was assumed that people with intellectual disabilities could not understand or give consent to sexual intercourse.

This is the undercurrent of the film Sanctuary. Sanctuary was originally a play commissioned by the Blue Teapot Theatre Company and written by Christian O’Reilly, who also wrote the film Inside I’m Dancing. Sanctuary is different to any other film I’ve seen depicting the lives of people with disabilities because the cast is largely comprised of people with intellectual disabilities. It’s a refreshing break from the norm of non-disabled actors assuming the roles of people with disabilities; Daniel Day Lewis played Christy in My Left Foot; in Inside I’m Dancing, the two main characters Rory and Michael were played by James McAvoy and Steven Robertson, neither of whom have disabilities in real life. So it was almost a surreal experience to be watching authentic disabled actors on screen.

But don’t be fooled into thinking that the actors were merely given these roles as some kind of tokenistic gesture – these actors are talented and each one inhabited their character with the same dedication as you’d see on any Hollywood screen. The film is set in Galway, with beautiful shots of Galway scenery showcased throughout.  Kieran Coppinger plays Larry, a quirky guy with Down Syndrome and Charlene Kelly plays Sophie, who has an intellectual disability and epilepsy. Both of the actors face the same reality as the characters they play – for them, sex before marriage is illegal. But that’s not going to stop Larry in his quest to have some ‘alone time’ with Sophie!

Tom, the care worker, brings a group of people with intellectual disabilities to the cinema, then leaves them unsupervised to arrange a hotel room for Larry and Sophie with the contents of Larry’s piggy bank. The existence of the piggy bank reminds us how childlike Larry is – or is it simply because he’s treated like a child? As the story progresses, it becomes clear how sheltered Larry has been. Although he’s in his twenties, his mother is disgusted at him for looking at a woman posing in her underwear in a magazine, and she chides him as he leaves the house for bringing too many sweets in his rucksack (she doesn’t know he’s bringing his piggy bank).

Shielding people with intellectual disabilities from the reality of sexual intercourse is bound to have repercussions. Firstly, it doesn’t make people less vulnerable to abuse, something that Sophie can attest to, having been sexually abused in her care home. Secondly, Larry knows that he needs to use a condom ‘to stop Sophie getting pregnant,’ but doesn’t know how to use one, and giving Larry a demonstration is beyond Tom’s comfort zone.  This results in Larry and Sophie having unprotected sex because, as Sophie says, ‘ah sure we couldn’t work it out.’ She smiles at the thought of having a baby with Larry, oblivious to the fact that it is highly unlikely that the State would allow two parents with intellectual disabilities raise a child.

Even though the main story is dark, some parts of the film are hilarious. While Larry and Sophie contemplate breaking the law, their unsupervised companions wander the streets of Galway and end up in comical situations, robbing shops, getting drunk and even getting high! There are some brilliant one-liners too that will put a smile on your face.

Does the film have a happy ending? That’d be telling! All I’ll say is this is a story that you won’t forget, and one that should be talked about long after the closing credits. And that the authenticity of the film – a combination of the plot, the characters and the setting -will change the way you perceive people with intellectual disabilities in a way no other film has thus far.

Sanctuary is available on Amazon. Go buy it – you won’t be disappointed!

 

 

True to Me

I’m sure each and every one of you have been wondering where I’ve been, and have been spending your waking hours pining for another thrilling instalment of this blog. My apologies for my absence, but believe it or not, I’ve been quite busy writing! I completed a ‘Begin Your Novel’ course during the first week of March and realised, to my great disappointment, that what I’d written so far is an unsalvageable mess. So, I did what any self-respecting writer would do and I started again, which has taken up a great deal of my headspace and time. Second time lucky, right…?

I also realised that I’m a cranky old bitch who, while I don’t mind blogging about disability issues, I hate talking about the day-to-day realities of having CP. To be honest, I bore myself so I wouldn’t inflict that on other people. I live as average a life as I can, juggling writing with raising my daughter, and I am lucky insofar as if I can keep some sort of realistic balance and not push myself past the point of redemption, I can get away with keeping a number of balls in the air. I’ve been conditioned to believe, through interaction with other die-hard activists, that it’s society that truly impairs us and that we need to keep challenging these barriers; they, and not our impairments, are the real source of inequality facing disabled people in Ireland.

Lately, however, I’ve been having doubts about my own beliefs, and these doubts have stopped me from blogging as I normally do. Who am I to question the system? Who am I to maintain that it’s society that disables us? Am I too angry? Have I become the proverbial ‘crip with a chip’ that everyone hates? And am I willing to quieten things down a little, stop being so extreme in my loyalty to the pursuit of pure equality and the philosophy of Independent Living (if there even is one any more)?

The answer to the last question is no. And I hate myself for it, I really do.

On Monday night, Tom Milne, Catherine Molloy and I partook in a radio show called the Open Door hosted by the wonderful Ann Marie Kelly on Midlands 103 where the theme of the show was my poem, ‘Fight, Fight, Fight.’ I have to admit that I acted like a pig-headed jackass towards Ann-Marie, which she didn’t deserve because she was very welcoming to me. But I wanted to highlight so many issues facing people with disabilities when she wanted to talk about my impairment and my day-to-day life. I felt frustrated. I didn’t want to be seen as inspirational (lads, I haven’t had a job with a steady wage for three years). I felt ashamed of myself. I mentioned my novel and what I want to achieve writing it but I don’t know if I’ll ever finish it. (It is the main item on my wish-list this year).

And up until an hour ago, I was struggling to find words to explain why I felt so frustrated in myself. Having stared at a blank screen for a whole half hour, I eventually said ‘sod this’ and decided to whittle away the evening hours watching TED talks on YouTube. To make myself feel better, I decided to watch Francesca Martinez’s TED talk in the name of ‘disability research’. Francesca Martinez is a writer, activist and comedienne with Cerebral Palsy who wrote a fantastic autobiography What the **** is Normal? In her talk, Francesca talks about how she spent her teenage years trying to fit in (just like I did) and how her life changed at nineteen when her friend Dylan gave her life changing information: ‘You are you. Yes, you walk differently but no two people walk the same way. You are Francesca, and you can define yourself any way you want.’

Francesca had a light-bulb moment, just as I did watching the TED talk. We spend so much time, she says, trying to conform in a world obsessed with consumerism, being told that if we buy lots of stuff, wear certain things and look and act a certain way, then we will be accepted by our peers. But, as she points out, the illusion this creates isn’t real. And that’s when I realised exactly why I felt torn apart inside.

I want to be real. I want to be seen as a real person. Yes, I am capable of doing some great things but I also reserve the right to be seen as a cantankerous git, someone who doesn’t always get it right. I want to be seen as someone who challenges the status quo, who is willing to take risks. I can’t change the fact that I  have Cerebral Palsy, but if I persevere, I might be able to change people’s misconceptions and eliminate barriers to full inclusion to society.

And I know that those who really matter will completely understand where I’m coming from. In the immortal words of Homer Simpson, ‘I never apologise. I’m sorry, but that’s just the way I am.’

 

The Search for the Hero

Like many of us, I woke up this morning to the news that Stephen Hawking, absolute genius, died at the age of seventy-six, over fifty years after he was expected to. For many people with impairments, living past their life expectancy is a feat in itself. I won’t insult anyone reading this by pretending that I fully understand the significance of Hawking’s work to our understanding of the universe, because I don’t. I’ve failed many a science test in my time – scientific matters, to me, is what Chinese is to most English-speaking people.  However he was an extraordinary man, an example of what the human mind is capable of.

For many, he is an example of ‘mind over matter’, of ‘triumph over adversity.’ To me, however, he didn’t achieve these things ‘in spite of his disability’ because to me, his disability wasn’t relevant. He simply achieved them.

When some people think of disability, they think of Hawking and what he’s achieved. However, Hawking’s genius was part of his own identity. I intend to read his book in the near future but I don’t expect to understand any of it (I am ridiculously bad at science).

I read online this morning that Hawking shares the same anniversary as Albert Einstein (freaky coincidence, no)? He also shares an anniversary with another man who made a much smaller but (in my eyes) equally important contribution to society.  And that man was Ed Roberts.

I’ve blogged about Ed Roberts before, and every year I remember him on his anniversary because he was a leader in the introduction of Independent Living around the world. He and his colleagues challenged the paternalistic model of disability, and fought to be recognised as a person capable of making their own decisions. Like Hawkins, his physical ability was severely restricted (the result of polio in Roberts’ case) but his ability to direct people and think independently was not. When I started working in the area of disability ten years ago, I was told to know the Ed Roberts story inside and out. I read articles, personal testimonies, interviews.

I was so in awe of him (and still am in many ways) that I put him on a pedestal. I aspired to be like him: ruthless and unflinching in the pursuit of equal rights for people with disabilities. He has rightly garnered a lot of respect from millions of activists across the world. Were it not for his insistence that he knew his own mind, that he wanted to be empowered rather than being a passive recipient of care, chances are that I and many others would be relegated to the back room of our parents’ houses, never having the opportunity to leave the house.

Or perhaps I’m being naïve. After all, although Ed is known as ‘the father of Independent Living,’ there were many other activists out there with the same mindset at the  time, a group of people who collectively became known as ‘The Rolling Quads.’ The Rolling Quads brought into existence the first Center for Independent Living in the University of California, Berkeley, which was a Personal Assistant Service directed by the disabled people themselves. This revolutionary act led to the establishment of hundreds of Centers for Independent Living across the world.

Ed Roberts and Stephen Hawking were both extraordinary people who, unfortunately, now exist only in history. As someone who is becoming increasingly preoccupied with disability politics, despite having convinced myself that the only thing I really want to do is write, I have found myself panicking over the last two years as I watch my esteemed peers slip into the next world. We thought Martin Naughton was invincible; then our faith was tested six months later (on my birthday in fact) when Donal Toolan passed away last April. In the last seven months I’ve seen the untimely demise of another two of my role models: Eugene Callan and John Doyle – both strong mouthpieces for  the Independent Living Movement.

I remember well each separate occasion that I met these four men for the first time, and what struck me about them was their sense of conviction. Chances are they weren’t entirely sure what they were doing – nobody really knows at the beginning (I know that now) – but they had the courage to articulate their thoughts and opinions, be they right or wrong, and soon other people started to find their own courage, their own voice.

We live in a different world now. Roberts, Hawking and even Martin Naughton and his peers paved the way in a world where there were no expectations of disabled people. The fight is not over yet. Ireland has ratified the UN Convention of the Rights of People with Disabilities but not the Optional Protocol which enables people to report breaches of the convention to the UN. Our Personal Assistant service is becoming more medicalised by the day and less about what we need and more of a  tick-box exercise. We are reaching a critical point in disability politics where we’re either going to be free to make our own decisions, or the victims of discrimination and safeguarding forever.

We have the opportunity to be our own heroes.

Let’s take it.