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.

 

 

 

 

 

 

 

 

Rebel Girls

My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.

 

What’s the Story?

 

My Left Foot was on RTE 2 on Saturday night. I know it well because it was one of the ‘comparative’ texts I studied for my Leaving Cert (the film, not the book). Of course, me being me, I’ve read the book as well and it seems to be the voice of a man who very much came from an era where disability and impairment were problematic (okay, let’s face it, that’s every era – nothing’s changed there). Christy Brown is regarded as one of the most talented Irish writers of the twentieth century, and his name has become synonymous with triumph over adversity, literary genius, truly inspirational. And as a writer with Cerebral Palsy myself, I reflected on what it’s like to live in the shadow of such genius, and such brutal and cold oppression such as that endured by Brown.

If I had been born thirty years before, would I too have been relegated to watching life pass me by from under the stairs?

I’m constantly being told that I should consider  writing an autobiography, as Christy says ‘my own story’, and although I’m sure that every writer toys with the idea at one stage or another, part of me can’t see anything particularly extraordinary about my life. Unlike Christy Brown I was mainstreamed, and was very much a part of ordinary family life. I went to school, where I detested homework, and then to secondary school and college. I was always convinced that this was the status quo for other disabled people too, in spite of the fact that there were only two other students with physical disabilities in my school. (I say physical because there are also hidden disabilities like dyslexia, etc.)

Sixty years on from the publication of My Left Foot, I know that there are hundreds of autobiographies written by people with disabilities. In my home town alone, two men with Cerebral Palsy have published their own stories – Brendan Brophy wrote On Three Wheels and Dealing a Bad Hand and David Boland wrote Life from the Tip of My Tongue. Their style is different from Christy Brown’s, although some experiences are the same such as being in the CRC. My good friend Leigh Gath is currently extending her autobiography Don’t Tell Me I Can’t, the s\tory of her incredible journey as a thalidomide survivor (she has hands and feet, but not arms and legs) growing up in Newry during the Troubles, finding her identity as a sexual being and escaping from her alcoholic husband to finally find true love.

The progression of the perception of disability between My Left Foot and Don’t Tell Me I Can’t is intriguing. In My Left Foot Christy is preoccupied with his physical limitations and the now outdated terms he uses to describe himself, such as ‘cripple’ and ‘handicap’ whereas having been born thirty(?) years later, Leigh has a different perspective. Despite her specialised education at boarding school, she can clearly see from a young age that she is not the ‘problem’ but rather she lives in a society that won’t accommodate her needs. This frustration led her to become involved in disability activism and hard-core protests in trying to secure the rights of people with disabilities. It’s interesting to note that Leigh grew up in Newry, a community divided into Catholic and Protestants, while also inhabiting a world that endeavoured to reinforce the differences between disabled and non-disabled people.

Christy Brown’s perception of disability is now a little outdated. But one thing he must be credited for is that he gave permission to the disability community of Ireland (and the wider world) to tell their stories. Unfortunately at present we live in a world where these stories often exist in isolation. Christy Brown’s book may have garnered him worldwide recognition, but the rest of us face a new challenge. Disability has become so commonplace and integration is supposedly the status quo to the extent where, in the future,  writing your story from the perspective of having a disability won’t be enough to gain you credibility or respect.

Instead, it will be up to us as the future Christy Browns to push the message that disabled people in themselves are not problematic. It is society that disables, society that insists that we are different. A disability or impairment can never be overcome, but obstacles created by our society can be removed, if we put our minds to it.

And though I admit that I also am a sucker for a good old ‘triumph over adversity’ story, wouldn’t it be simultaneously strange and wonderful if we had more stories like: ‘Wobbly Yummy Mummy had no problems accessing mainstream school, or going to college, or accessing transport. She lived an average life with her husband and her kid. She sold a billion copies of her bestselling novel. The End.’

Okay, that’s a little boring. A little ordinary, even. But a good writer will always find the extraordinary in everyday life, if he or she is willing to look hard enough for it. My hope is that in the future, disabled  people will be perceived, and have the courage to portray themselves as the multi-faceted, complicated creatures we are.

And undoubtedly My Left Foot, both the book and the film version will be studied for decades to come, and my hope is that students will exclaim, ‘How could Irish society exclude Christy Brown and other disabled people for so long? Thank God Ireland ratified the UNCRPD!’*

*We haven’t, as of 23rd January 2018. The Minister of State with responsibility for Disability promised it would be ratified by the end of January. Forgive me if I don’t hold my breath.

 

 

Cripples In Crisis

Thinking that today was going to be a relatively quiet day, writing-wise, I decided to settle down and watch the documentary ‘Carers in Crisis’ (aired Tuesday 5 December) and mentally pass it off as work. I had previously decided to boycott it because I feel that over the last twelve months, there has been an overemphasis on the heroism of unpaid carers, a narrative that traditionally frames people with disabilities as ‘burdens’.

Words cannot describe how grateful I am that RTE actually approached the documentary in such a sensitive way, in a manner that not only highlights the sheer exhaustion which family carers are currently experiencing, but also emphasises  that Ireland’s charitable approach to the provision of disability services isn’t working, and is not going to work going forward either.

Let’s look at this logically. It’s estimated that there are 200,000 carers in Ireland right now. Two hundred thousand people who, whether willingly or begrudgingly, are caring for a family member who has a disability or is entering old age. Two hundred thousand people who get little recognition from the State for the fact that they have put their lives on hold in order to care for their loved ones. Often, family members, as was portrayed in the documentary, have to carry out tasks such as personal care (toileting, showering), tasks that Carers and Personal Assistants now need a QQI Level 5 qualification in Healthcare Support to perform. I’d wager that many family members have never even heard of this.

There’s no doubt that many carers are drained and, as in the case of Johanne Powell who cares for her severely disabled daughter Siobhan, at the end of their tethers. All of the parents in the documentary were hoping that their dependent children died before them because they don’t trust that the State will provide the care their loved ones need. After all, HIQA has highlighted some inhumane conditions in residential centres across the country.

But one message was particularly clear: the only way the immense and arguably unnecessary burden to family carers is going to be lifted is if we start putting the person with the disability first, something which the Junior Minister with Responsibility for Disability Finian McGrath agrees is vital. However, after meeting him in person I instantly recognised his evasiveness tactic; he continually interrupted Claire Byrne with what seemed to be pre-rehearsed speeches. With respect, after watching him and meeting him last month, I feel that he takes criticism about the status quo for people with disabilities too personally. For example, he pointed out that the respite grant has been restored. He also mentioned that there is now a taskforce working on personalised budgets for people with disabilities.

What concerns me is that his experience of disability comes from being a parent of a child with a disability and while he seems to be a fierce advocate for parents and carers, we need a Minister for Disability who will speak on our behalf. We need someone who genuinely recognises that people with disabilities are tired of constantly having to fight for our rights. We live in a country where the right to residential care was signed into our constitution in 1990, but where people with disabilities have no legal entitlement to a Personal Assistant Service. Having worked in the area of Independent Living for seven years, I am now passionate about spreading the philosophy of Independent Living, not least because having a Personal Assistant is often economically wiser than living in a residential institution. The latter can cost up to €800 per week, according to last night’s show, where having a Personal Assistant coming into a person’s own home might only cost half that.

It is only through striving to protect the rights and dignity of people with disabilities in this country that we will create a better Ireland for everyone, disabled person and carer alike. It’s time to stop pitting disabled people and carers against each other, because unless our country starts providing adequate, person-centred services, there will be no winners in the end.

The Disability Movement is in crisis. We must assert our rights at every given opportunity.

Only we can stop the Movement from moving backwards any further.

 

 

Fight, Fight, Fight

Before they cut the cord,
They shake their heads and say
That having a ‘child like that’ won’t be easy
And probably won’t live very long anyway
(Well one must hope).
Because, heaven forbid
This child is a drain on our resources,
A
nd if it survives it faces a lifetime of pain
And completing meaningless little courses,
The kind that would never get you a job
Beyond stacking shelves in Aldi,
He may never talk and never walk
Or go to school, or get married.
But those little voice inside your parents shouts with all their might,
‘You don’t know what you’re on about. We will fight, fight, fight.’

*

You dodge the bullet of special education
Thanks to your parents’ begging and tears,
You work and work to prove yourself –
Much harder than your peers.

You’re told to ignore the insults:
Spastic, rehab, handicap,
They don’t know what they’re saying
And it would be rude to fight back.
‘Oh aren’t you an inspiration?’
They say when you achieve
Enough points in your Leaving Cert
To grant you the reprieve
From languishing in a day care centre
And instead you are lucky enough
To study in University just like you always dreamed.

Suddenly you’re equal. It’s too good to be true
And people are sitting up and listening to you.
After all these years they realise
You have something of worth to say,
You’re finally taken seriously!
Nothing can get in your way!
Then BAM! You are spat back out
And put back in your place
When you leave third level education
And fall right on your face.
What makes you feel so special
And worthy of a job
When you walk like an old drunk
And dribble like a slob?
College has given you notions
That simply will not do!
But don’t worry – there’s lots of Jobbridge courses
For people just like you.
But the niggling voice inside is saying ‘This simply isn’t right.
I want so much better. I will fight, fight, fight.’

****

And so I don the armour
And pick up the heavy sword
To follow in the footsteps
Of activists gone before.

Ignoring the voices of normies
Telling me that I’m an ingrate
Don’t I know I would be dead but
For the mercy of this state?
But I don’t feel their compassion,
Just a weight upon my heart –
I just want to fix the world
But I don’t know where to start.
A world where I need not give notice
To travel on a train
A world where I don’t have to beg for my rights
Time and time again.
And those who once paved the way for us
Are dying, one by one –
Dying fighting a battle
That they have never won.
The workload is increasing
And people start to look to me
For little nuggets of wisdom.
‘What shall we do? Will we ever see
This so-called progress that’s meant to be
Happening in Ireland right now?’
I can’t answer, I don’t know how.

And I plaster on a smile
And blog about something deep,
Knowing that they don’t know
I sometimes cry before I sleep.
You can’t show ‘them’ your weakness –
They’ll feast on that like cake –
So you simply be persistent until you
Wonder how much more you can take.

You hope your messages are seeping through,
Although you never are quite sure,
When people say they understand,
Then refuse to ramp a door.
You start to become repetitive,
Repeat, repeat, repeat.
And suddenly you’re that annoying crip
That people cross the street
To avoid.

And you smile inside
Because in your heart you hope
That it’s getting harder to hide
From the grim reality facing people in Ireland today.

*

Sometimes it feels that we’re getting nowhere
And no-one hears our plight,
But we owe it to our children
To stick up for what is right.
And they might have to do the same
Which should be to this country’s shame,
But in every single disabled person’s name
We have no choice
But to suck it up
(because Ireland’s fucked it up)
And continue
To fight, fight, fight.