These blogs are categorised both by subject and month. If you have any trouble navigating it, please do not hesitate to contact me
I was looking at my diary this evening trying to work out a writing plan for the next few months. I’d be ashamed to put a figure on how many blogs I aim to write a month versus the amount I actually have written. As I was going through my diary I saw that I’d written beside May 1: Mental Health Awareness Month. I had obviously planned to write something incredibly inspiring when I made this note, but as you can see when you scroll through my blogs for May, it didn’t happen. I couldn’t bring myself to write it, because doing so would’ve made me a hypocrite.
The truth is that on May 1, I was struggling to get out of bed, and I wish I could tell you why.
It wasn’t due to stress: sure, I was busy with the novel and other stuff but it wasn’t particularly taxing. Everything was great: JP was himself, and Ali her bubbly self and writing was going well. Yet since the end of January I had been feeling shit for no apparent reason. I started to feel fearful; I’d been here before and overcame it with the assumption that it would never happen again. That if I ever felt down again that I would speak out and get help before it got overwhelmingly bad.
It crept up on me quietly this time, out of nowhere. I was fine one week and not okay the next. I felt frustrated as I scrolled down through my Facebook feed, seeing the clichéd ‘It’s ok to be not okay’ and ‘needing help is not a sign of weakness’. Well, perhaps this was true for other people, I thought, but it didn’t apply to me. I had no reason to be down – I had a great family, great home, and I had lots of work coming in. And yet I was going to bed every night, tears falling from my eyes.
The truth is I felt like a failure. I felt empty. My novel might never be written. I don’t know how to go about finding another job. I still feel guilty about leaving my job behind three years ago, a job that I always felt that I was never any good at. These thoughts twirled around my head as I lay down each night. I had let my mum down, my daughter down and myself down. Some people see me as a role model, whereas I think I am a bit of a fraud.
Things finally came to a head on the 17th May. It was National Walk to School Day and I had walked Ali to school alongside other parents, a perfectly normal thing to do. But I didn’t feel normal at all. I left Ali at the school door and whizzed home, the tears stinging my eyes. I was sick of it, of feeling so crap. So I did something I’d never done before – I rang the doctor to make an appointment. There was an appointment that evening, and I took it. The minute I hung up, I felt sick. What was I going to say? What if the doctor thought I was crazy and had to go on antidepressants? What if she reiterated my feelings that there were people worse than I was, that I was being melodramatic? Also, the thought of handing over money just to have a chat with a doctor seemed like a massive waste.
As I sat in the waiting room, I felt like a fool. Across the room, there was a little baby in a carrycot screaming in pain. I don’t need to be here wasting time, I thought, picking up my handbag. But in true dramatic style, the doctor called my name at that very moment.
I followed her to the room. ‘Did you get your driving licence sorted?’ she asked, looking at the screen. I laughed.
‘Just this morning, believe it or not.’ (The rigmarole to get a licence these days is ridiculous).
‘So what can I do for you?’
‘Well, I don’t want to be wasting your time,’ I said, apologetically, ‘but the truth is I just don’t feel myself. I mean, emotionally.’
She stared at the screen. ‘How long has this been going on?’
‘Ah, on and off, since the end of January.’
She raised her eyebrows. ‘That’s an awfully long time,’ she said. ‘Do you know what triggered it?’
I shrugged. ‘No idea. Just a general sense of failure I guess.’ I was starting to sound like an idiot, and was clutching my handbag, ready to run.
‘Okay. And did you suffer from postnatal depression? Or do you think you have it now?’
‘I had it for two-and-a-half years.’ She frowned.
‘There’s no record of that here.’
‘I didn’t report it at the time. Too scared.’
‘Right, and are you managing? Housework, meals, looking after Alison?’
‘Oh, absolutely. It’s not affecting my work at all, at home or otherwise. I just feel flat.’
‘And what do you do in your down time?’
She’s funny, I thought. ‘Not much. I try to work as much as possible. I work freelance, so if I don’t work, I don’t get paid. I like to stay active, and disability activism is so important to me. And I’m looking for another job. Love being busy.’
‘Hmmm, you don’t think maybe you’re too busy?’
I scoffed. ‘It’s not like I have a full-time job or anything!’
As I listened to my own answers, I could hear what the doctor heard, at last. Firstly, that just because I didn’t have a nine-to-five job didn’t mean that I wasn’t working, or that the work that I do wasn’t valuable. Secondly, my self-worth is so wrapped up in what I produce in terms of my parenting and my writing that having not finished my novel had become like the end of the world to me. Thirdly, that downtime is important. This is the one I struggle with the most. I always feel like I should be doing something: writing, playing with Ali, cleaning, exercising. To me, sitting watching TV or reading is wasting time.
And then the doctor said the one thing I absolutely hate to hear:
‘You need to keep your expectations in line with what you can physically achieve.’
I stiffened. ‘I don’t think my disability is relevant, to be honest.’
The doctor laughed. ‘Well, it is. And also, you’re human. Take more rest. And talk more.’ She scribbled down the number of a counsellor on a post-it, which is still lurking somewhere in the bottom of my handbag.
I came out of the doctor’s feeling emotional. I had expected to be told that I was silly, that I had nothing to feel down about, that I should buck up and cop on. And she didn’t say that at all. She had validated how I was feeling and acknowledged that it was real.
I’m not writing this for attention. I didn’t even want to publish this to be honest. I don’t want people to feel sorry for me, or feel that I’m not able to work because I am (Keep work coming please – I like to eat). I was going to leave it languishing on my laptop. Then I thought of all the recent suicides, both local and celebrity, and reckoned that if I could help just one person reading this, then it would be worth sharing.
Sometimes, despite the clichés, it doesn’t feel right to be not okay.
But it’s not right to suffer in silence either. And I can’t be the only one who’s sick of it.
So let’s not do it anymore.
So if any of you guys want to share your stories please do. Even if it’s so I don’t feel like such a pariah
‘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.
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.
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.
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!
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.’
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.
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.
Hi all, my apologies for not blogging here for a long, long time but believe it or not, I have actually been busy writing! I’m half-way through a ‘Begin Your Novel’ course (the time to do this, I suspect, was three years ago) and hope to dive into finishing Rachel’s story with more clarity. Deborah, if you’re reading this, we said the beginning of May for a first draft, but looking at the work I need to do that won’t be happening – sorry!
One of the other things I’ve been working on is an article about why I chose to write and my writing process. It was a great opportunity to promote myself as a writer and it will be published in the Spring edition of The Irish Wheelchair Association’s SpokeOut. While everything I put into the article is completely true, I did make some omissions to the realities of the writing process. Here’s what a typical day might look like
9am – Arrive at my desk. My diary is open in a deliberate attempt to get me writing straightaway, complete with a pen to encourage me to jot down things straightaway. Ignore said diary and open emails instead. It’s important to know what skills my cousin endorsed me for on LinkedIn. Ooh, writing… oh yes, right…
9.30am Open Word and start freewriting. It’s great to get the old juices flowing. I love writing, it’s awesome.
10am – I did not know that your one Sarah from Corrie, Tina-whatever-her-face is, actually went out with Ryan Thomas who plays Jason. Oh, and that vicar Billy is going out with your man Daniel – wow he’s gay?! Oh all right, this has nothing to do with my novel, oops
10.20am – Back to work.
11.15am – That dryer has been beeping for the last ten minutes. I must turn it off because it’s wrecking my head.
11.30am: [ding] Who’s messaging me? Oh, it’s Ken from college. Writing back to him surely counts as work, him being a published writer and all. He’s sharing his knowledge. It’s imperative I don’t ignore him.
11.45am: 500 words written. Of pure and utter waffle! This is embarrassing, I’ve been working since half nine!
12.00pm: I’ve spend the last fifteen minutes rocking back and forth in my office chair, trying to calm myself down. But I feel I’m failing as a writer, and failing at life. Who did I think I was, trying to be the next Margaret Atwood? I wonder did she ever feel like this. I’m going to quickly google and find out
12.15pm: Nope, probably not. I mean, look at all the books she’s written. Bet she didn’t spend all her time googling all her favourite authors. You know what? This internet’s nothing but a bloody distraction. I’m going to disconnect altogether.
12.55pm: 300 more words. Not bad if you omit the fact that I’m supposed to have my novel finished by the end of May. I feel sad. Cue more chocolate.
1.05pm: Nooooo, what is my laptop doing? Updates?! I don’t remember agreeing to this time. ‘Preparing to configure: 3%’. Why are you doing this to me?
1.45pm: Alison will be home in fifteen minutes but thank God the bloody laptop has finished updating itself, though what difference it makes I don’t know….. Oh no… no no no…my work, where is it? I’m opening Word but not seeing it… Recover unsaved files… no, that’s not it… agh! [enter string of expletives here]
2pm: Make note in my diary to write blog about my crappy day’s work, but maybe wait until I find it funny.
Of course, not every day is like this (if it were I wouldn’t bother writing at all) and if I had my wish, I’d be more organised and productive.
Then again, I’d also love to move to Australia, but that mightn’t happen anytime soon either.
At eight minutes to midday,
On a sterile, cold operating table
Happiness was born.
She weighed eight pounds four ounces.
She was strong,
But her mother was saggy, deflated.
My breasts throbbed with the heaviness of milk
Ready for the taking.
They sewed me back together,
But alas, they knew
They couldn’t fix me.
I curled around my newborn cherub
Like a lizard around her precious eggs,
Sneaking peeks at the round blue eyes
And the perfectly pink skin.
Nothing made me so frightened
Than my beautiful, breakable china doll.
I’d broken so many cups, glasses, plates –
But this was something that really mattered.
How I wished I could bubble-wrap you,
Shield you from my imperfections,
Preserve you as you were.
And all that time spent worrying –
Baby talk and weaning all a blur –
And for what? To prove myself? Ha!
All that matters is that you love me
And that I truly believe I am good enough.
Worthy of the princess
Whose hand feels so soft on my cheek,
Who strokes my eyebrow when she is worried,
Who pulls me so close after her bedtime story
That our breaths fuse in the half-darkness
I know people watch us, comment and stare
And shake their heads, but honestly, my darling
I don’t care.
They tried to destroy what we had and now
I say no more, enough.
I wasn’t put on earth to prove them wrong
But rather to love you,
And as every year goes by, be assured
That I love you more than life itself,
Than all the stars and oceans,
Even more than chocolate.
Hi folks/legions of loyal followers/Dad(!)
I wrote this monologue just before Christmas. It’s called ‘Cripple for Sale’. The rationale behind this monologue is that in Ireland, disabled people are afforded neither rights nor dignity owing to our government’s failure to make significant investment into Personal Assistant Services. The HSE has pledged money for home help and home care services in 2018, but it’s unclear whether there’s been any extra investment into Personal Assistant Services.
Many of us, including myself, want to be seen as equal in Irish society. Paradoxically, however, we need certain supports – human, technological, accessibility and financial (to name a few) in order for this to happen. Sometimes I find, as a person with a disability, that it works against you if you portray yourself to be too ‘capable’ or ‘able’ as the powers that be don’t take a holistic approach to service provision and instead provide services based on absolute ‘need’. Consequently, people with disabilities are becoming institutionalised in their own homes and failing to reach their true potentials.
Every October, come budget day, the Center for Independent Living and the Irish Wheelchair Association make ‘Pre-Budget Submissions’ outlining why substantial investment is needed in the disability sector. We are at higher risk of poverty owing to being stuck in a benefit trap. The Disability Allowance is means tested and doesn’t take into account the extra costs of having a disability – the cost of equipment, extra heating, durable shoes, pre-prepared veg – little things that make a huge difference in the lives of many.
We don’t want to be charity cases. As I said before, charity is too unreliable. We need our human rights to be protected. And with rumours that the ratification of the UN Convention of the Rights of People with Disabilities has been postponed until 2019, disabled people remain dependent on the goodwill of the State.
Anyway, here’s my monologue ‘Cripple for Sale’. Enjoy!
A young woman sits in a wheelchair with a tartan blanket on her lap, shaking a bucket.
Cripple for sale! Cripple for sale!
A cripple’s soul is for sale!
I ain’t too fussy about the price; any old coppers will do!
Come on now, dig deep, it’s for a good cause!
Hey you – yes, you- oi – ! walking with your head down
Avoiding eye contact with me –
What do you think will happen if you look at me?
Do you think I will try and manipulate you with my sad eyes,
Remind you that it could be you sitting here
Catching trails of your own saliva on the back of your hand
Hands and legs jerking like a woman – possessed!
What’s that you say…? … you’re frightened? Frightened of me…?
How the hell do you think I feel?
I’m sitting here naked, cut open, on full display
Every spasm, every jerk, every bloomin’ thing I have offered up in some sacrifice…
…oh, I’m sorry, have I made you uncomfortable? Oh dear!
I didn’t mean to… that’s why I thought it best to sit in this wheelchair… even though I can walk…
Well, you may not call it walking… I suppose it’s more… ambling…crawling on foot…stumbling one foot after another…
Something like that ‘freaky’ creature in Lord of the Rings…
A cripple falling over would not be a good look
…but I’m sorry, I haven’t tried hard enough…
Maybe if I had spent more time doing that physio like you said… or if I had gone for that life-changing operation when I was six… Maybe if I had been a good little girl and done what I was told I wouldn’t be sitting here, in the freezing cold…
In a country where the only right I have is the right to be a defensive little cripple… alive only for the mercy of this wonderful, merciful government…
Oh, sorry I’m moaning again! aren’t I so lucky to be so far removed from that barbaric regime that defined Nazi Germany… that story that everyone knows and no-one talks about –
a place where cripples went in to be rehabilitated and came out…
What am I talking about now?
We don’t want to be upsetting people… after all…
Things are so much different now, aren’t they…?
People like me are even allowed out now… well… of course a couple of minor preparations need to be made…
You need to pass that pesky risk assessment, you know, the one that determines whether you’re at risk of falling, or choking, or drawing attention to yourself by being your wobbly self – phew!
…but yes, we are so much more free now, I mean, can you actually imagine how depressing it would be to be holed away in some ancient grey-bricked hospital, living life like a well-programmed robot, so well trained that it never occurred to you to feel unhappy… or to feel anything…
Oh of course I feel, but not what you want me to feel…
I suppose you want me to feel lucky and grateful
That you took the five seconds out of your day to throw the loose change from the bottom of your handbag into my bucket
To help the cripples have a better life
So you can go home to your family and tell them that you’ve made a difference to ‘those people’ –
You’re definite about this – we’re the same really (but not quite)
You want to help me, but you want to keep me at arms’ length – lest I infect you with my imperfections
Don’t think I haven’t noticed that disinfectant gel you keep in your handbag
To protect yourself from those ‘cripple germs’ –
And I suppose me being offended is a complete waste of time –
Just like us both pretending that you’ll ever really see me as your equal…
You haven’t really been listening, have you…?
So I suppose there’s only one thing I can do…
CRIPPLE FOR SALE!
Any old coppers will do.