Tag Archives: disability

Tuesday Thoughts: Empty Batteries

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(written Wednesday, 20 March 2024)

There’s nothing more annoying than when your day is scuppered by a minor inconvenience. I can’t speak for anyone else’s kid, but I know mine is tired. It’s been a busy term with schoolwork and projects, bake sales and fashion shows, football matches and National Slow Down Day, mingled with visits to her new secondary school, weekend basketball matches, meeting up with friends and sleepovers. And as much as I want to sit on top of her sometimes to slow her down, I restrain myself, reminding myself she was practically locked up for six months of her childhood. No wonder she wants to do everything and make up for lost time.

Anyway, back to my day. Wednesday mornings are always slow, because of basketball training on Tuesdays, so I wasn’t surprised that the sprog ran out the door this morning with no lunch and, more importantly, to her mind at least, no mouthguard, without which she wouldn’t be allowed to play in her school football match. Luckily, we live ten minutes away so I hopped into my wheelchair and flew down to the school to drop it off. Now, the school is a kilometre away, which makes it a two k-round-trip, which is nothing to my wheelchair, an Invacare Storm. However, coming back into my driveway, I noticed that one of the “bars” had disappeared. One bar of five. 

So, logically, you might think, well that means you could get ten kilometres from a full charge. And you would be correct, if it wasn’t for the fact that my wheelchair is long overdue a service. Any seasoned powerchair user will tell you that four bars left doesn’t necessarily mean your battery capacity’s at eighty percent. If you’re a gobshite like me, you might even try to push the limits of your wheelchair battery, a dangerous game. You know in your heart, as you set out to the shop a mere four hundred metres away, that the sodding thing could stop dead without warning at any time. You know it, and yet you still take the risk, trying to ignore what the universe tells you.

Because the world goes on, right? Who has time to wait for parts to come when there’s dogs to walk, basketball training, shopping to do? My front tyres are beyond bald, and my back tyres aren’t far behind. You can actually see the rubber underneath, which I’ve never seen before. Beyond threadbare. Realistically I shouldn’t be using it at all. 

And it made me think about how we push ourselves to keep going, even when all the signs are telling us to stop. Resting and taking time off have become dirty words in our culture. I read somewhere recently that, thanks to the convenience of remote working, some of us are working sixty/seventy-hour weeks, for no increase in wages. We live in precarious and stressful times. The cost of living has become untenable. (I read a 1984-esque article the other day, which said that the cost of living was starting to come down. Sure, coming down from a twenty-year high). We’re working harder than ever, with little extra to show for it. 

In addition, this winter (in my unqualified opinion) has been one of the worst for bugs and viruses. Alison has missed eleven days of school this year. This is a child who was never sick; who, until COVID, had near-perfect attendance records. Now I find myself trying to ply her with vitamins and tonics in the hope of keeping her well. The obvious reason is that because we were locked up for so long, we weren’t exposed to any viruses and now our immune systems have gone to pot. And it isn’t just children, either; so many adults I know have been wiped out in the last few months by various complaints. 

The saddest part of this is that lockdown taught us some valuable lessons that we seem to have forgotten. Many adored the slower pace of life and swore that they’d never go back to normal. People started exercising more, cooking healthier meals, pursuing the hobbies they’d never found time for. We promised we’d always make time for our loved ones, and for ourselves. Now, we’re busier than ever, desperate to make up for lost time. Coupled with the barrage of news about Gaza and Ukraine (and as I write this, Leo Varadkar has just stepped down as Taoiseach. Never liked him; he never did answer my open letter), we continue to live in uncertain times. Then, haven’t we always lived in uncertain times? The Troubles, 9/11, the London bombing, Paris and so on. Such is the nature of the world we live in: it doesn’t stop.

That doesn’t mean that we shouldn’t, as I was reminded a few months ago when I hit a wall. Funny how it’s only when the battery has fully drained do I acknowledge that there might be a problem. I won’t go into the boring details of what caused it, but I will admit that I ignored all the warning signs. My chronic pain was flaring because of the cold weather, and I was wrecked from lack of sleep. But I was still able to keep house and parent, so it wasn’t serious, right? Wrong. Nonetheless, I completed the first stage of my editing course, but at a cost. I was like a zombie, with a chip – the slightest thing made me either angry, or cry like a baby. The more I tried to push through, the harder it got. It felt as though a force from beneath was trying to suck me into the ground.

When did you start feeling like this? My husband asked.

October, I sheepishly admitted. 

This was the end of January, after Alison’s confirmation. I was so exhausted, and I didn’t know why. I don’t have a taxing life. I don’t work 9-5, my child is now a preteen and I get help around the house. Yet, I ignored the warning signs. My chronic pain was through the roof, and instead of taking note and putting on my TENS machine, I was pretending it didn’t exist. Instead of napping to make up for the broken sleep, I was sitting in front of the laptop writing gibberish. I was officially empty. It was scary, but I’m slowly coming out of it now.

My wheelchair needs a full service, having not had one in nearly four years. Chances are I might have to apply for a new one, because at the moment I don’t trust it, and even the best wheelchairs have a shelf life. And we humans also have a shelf life. I am a huge fan of Mel Robbins, motivational speaker, (I wish I could apply all her advice to my life; I think I’d be on my tenth bestseller now), and in one of her podcasts, she pointed out that we have not taken time to heal from the collective trauma that COVID has triggered, and that as we rush back to normal, we need to find ways of processing that, as well as looking after ourselves physically and mentally. Coupled with international unrest and whispers of another economic crisis, we have not allowed ourselves to heal. So how can we be our best selves?

At the end of the day, my wheelchair is a tool, which can be repaired or replaced. But we are not tools. Our sole purpose is not to produce, but to live, love, and experience the world. In the grand trajectory of the lifespan of the universe, we are here but for a few short seconds. And in order to make a difference, we have to be in tip-top condition.

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship. 

The Important Conversations – Tuesday Thoughts 4

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(Published Sunday 25 June 2023 due to holidays)

Let me take you back to January 2008. I’m working with the Offaly Centre for Independent Living, my first job after graduating from Trinity with an English Degree. I’m twenty-three, and I think I’m the cat’s pyjamas. I’ve landed a job here on the FAS Scheme with little to no experience. Trouble is, I don’t quite know what my role is. I want to add something, but I’m not sure what I’m adding to.

I google Independent Living and read definitions that at one stage, I could recite verbatim. I’m starting to think that my new job isn’t all that exciting. Then I come across the story of Ed Roberts, and suddenly I’m captivated. It’s the story of a very ordinary boy who, in his early teens, contracted polio and was left almost completely paradise. He’d written himself off, fervently wishing to die until he was told that if it was truly his wish, then so be it. Suddenly, Ed realised that it was freedom of choice he was craving and that he wanted to live.

I’m hooked. I need to know more. I come across another name, Judy Heumann, and my mouth falls open as I learn that she and Ed were at the centre of the establishment of an entire human rights movement. There’s more information about them both – interviews, short films – and I realise, as I waste away another day in front of my laptop, that it’s these stories that are making me more curious about Independent Living. These real, personal stories.

I gain permission from my manager, the late Michael Nestor, to capture these stories. But I’m young and inexperienced, and my overall efforts are a bit crappy. I don’t prepare the questions properly, I don’t bother to prod people or encourage them to talk. I’m going in with my preconceived ideas about what people are going to say. As a result, the finished product is a flop, and there’s no uniformity in the collection. No common theme emerges. And I convince myself that maybe I’m not as interested in Independent Living as I once believed.

Still, the idea of capturing the Independent Living Movement in some tangible way never strayed far from my thoughts. It’s said that one reason for writing a book is because as a writer, you wish to discover something, rather than to impart wisdom that you already know. In 2014, I decide that I wanted to write full-time, a decision that frightens me to this very day. I’ve always loved reading stories, and I want to capture some of my own. I start to move away from disability activism. Alas, something terrible would happen and whether I like it or not, I’m about to be roped back in.

On the 13 October 2016, RTE announces that the father of the Irish Independent Living Movement, Martin Naughton, has passed away at the age of 62. It can’t be true. Surely Martin is invincible? I genuinely believe that the bottom has just fallen out of the disability movement. Who would take over? Little do I realise that nobody needed to “take over”, that for years, several other disability activists had been coming together to bring about much-needed social change. I know that there had been a historical protest in September 2012, rallying against the eradication of Personal Assistance for disabled people in Ireland, but who had been involved? What had been sacrificed? Were they scared? Did they ever just get tired of the whole bloody racket and vowed to give up? For some reason, I need answers to these questions. I need to know that, if I’m going to join a disability movement, that it’s not going to be a waste of my time and energy. I need to know that this movement truly belongs to disabled people.

I’m being arrogant again. I know nothing. A week after Martin’s passing, a group of us are brought together to discuss a commemorative event. I’ve heard of many of these people, including Ann Marie Flanagan and Shelly Gaynor, but I’ve never met them before. I was following them in a quest to create a space to talk openly about rights and self-determination, but I was joining the motorway from a different exit. I wanted to know more. I asked permission to set up a blog to gather these stories. But it still wasn’t enough for me.

Another reason for writing a book is to create something that you’d want to read yourself. I’d always wanted to read about the history of the Independent Living Movement in Ireland, not just about dates, but I want to capture the human passion behind it. How do you nurture that inner self-belief that you truly belong in the world? Working on the commemorative event, I realise that camaraderie is a huge part of it. Activism isn’t just about marches and policies; it’s those little chats in the pub afterwards where you expose your vulnerabilities to other people. That’s how you learn to trust in each other, and come together for a collective cause. As I hear other people talking about Martin Naughton, what struck me was how many people remark “I didn’t know that I could do x, y or z, but Martin believed I could, and so I did it.” That, to me, is powerful, and I wondered how I could collect these stories and inform others about the power of the collective.

One thing I learned when I worked in the area of independent living is that people don’t always relate to academic definitions or legal jargon. They connect to each other, something that became increasingly obvious in the early days of the COVID pandemic. Independent Living Movement Ireland committed to creating online spaces where seasoned and emerging activists alike could share experiences with each other. In April 2020, with no hope or expectation whatsoever, I approach Des Kenny, Chair of Independent Living Movement Ireland (ILMI), with an idea that we could capture these stories. His support and encouragement led me to approach Damien Walshe, CEO of ILMI, with a rough proposal. To my surprise, he agreed that ILMI and the Independent Living Movement should document these histories, and would I like to have the honour of doing it?

I was thrilled. – But shouldn’t you call in a professional? I asked.

-You are a professional, I was told. You’re a disabled writer with lived experience. Now put that useless doubt to one side and get on with it. That wasn’t what I was told, of course. Damien and Des are kind, diplomatic gentlemen. What they actually said was: “We wouldn’t let you near it if we thought you weren’t up for the job.”

And so, we invited a number of activists to recount their stories to a live Zoom audience on Wednesday nights during the summer of 2020. Ellis Palmer, talented BBC journalist, suggested that the sessions should be made into podcasts, and made available on the ILMI website. 

I admit, I didn’t really give much thought about what I’d signed up for. I’d done transcription work before, but I was nervous about doing this. I wanted to capture the unique voices of those who were to be included, so the transcriptions were word-for-word, then edited so that I wasn’t tempted to include my own slant on their stories. The actual progress is laborious and time-consuming, but completely worth it. It’s the only way to capture the authenticity of these pieces, and for these activists to have ownership over their own words.

I cannot stress enough that the final product, Conversations about Activism and Change: Thirty Years of Independent Living Movement Ireland and Disability Rights is not a definitive history of the disability movement, but rather my first attempt in capturing part of it. If I had my way, I would still be interviewing disabled activists and transcribing their stories, but alas, I’m only human, and we needed to agree an end goal. These stories are intensely personal. Details of personal and political struggles can be sad to read. What shines through the entire collection is the recognition on the part of all the storytellers that they were not alone. Once they wrestled with the internalised oppression, which is a byproduct of an over-medicalised childhood, they learned how, through working together, to recognise and tackle societal and attitudinal barriers. Some stories include subtle nods to fallen comrades who influenced them as activists. There’s a consensus that although much has been achieved, we still need to keep fighting to be recognised as citizens with rights as opposed to objects of care.

Conversations about Activism and Change is the book I yearned to read when I started working in the area of Independent Living, and I am so relieved to know that younger activists coming up behind me will have some sort of blueprint for campaigning for equal rights in the future. It is my dream that the language of equality and human rights will override the long-seated discourse of pity, charity and helplessness that is so deeply intertwined with disability in Irish culture. And the only way this will ever happen is if we continue to use our own voices to create those important counter-narratives, to have the courage and conviction to speak for ourselves and own our own histories. 

Conversations about Activism and Change: Independent Living Movement Ireland and Thirty Years of Disability Rights

Available on Amazon as paperback and for Kindle:

Should I Be Fixed? – Tuesday Thoughts 1

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Apologies folks for the long silence. I was trying to decide what to do with this here blog, whether to shelve it or archive it, and after a lot of soul-searching (and talks with my patient husband and some writer friends, including the long-suffering Ken Mooney), I’ve decided to commit for the next number of weeks to have something ready to post every Tuesday, but – full disclaimer – this may or may not happen. Watch this space!

The topic of this week’s unmissable instalment is timely, linking in with two separate things – the novel I’m hacking away at, and a new programme that will be available soon on BBC Reels featuring activist Paddy Smyth entitled Should I Be Fixed? Like myself, Paddy also has Cerebral Palsy, and like many of us, he’s had his own journey to self-acceptance and feeling comfortable with his disabled identity. I learned about the programme by accident, when I was farting around online this morning instead of writing my novel. 

Paddy did a radio interview with Ray D’arcy, discussing the upcoming programme. He spoke candidly about the aftermath of his experiences on the RTE programme, First Dates, which aired in 2019. “I thought I’d be loved,” he said, recalling that some of the comments he received following the show were quite negative. “Some people accused me of using my disability to win.” I can only imagine how hurtful that was.

Paddy’s journey to self-acceptance shares some parallels with mine, and also with Rachel’s, the character who I’ve been trying to write a novel about for the last eight years(!!!) Lately, I’ve managed to gather some momentum with telling Rachel’s story (nearly back up to 60k, yay!), but only because I took some time out to do some real self-reflection. I had to learn to be comfortable with some heavy realisations. The first one is, crucially, that I seem to have a penchant for punishing myself for my impairment. Since starting to use a wheelchair, my output and productivity has gone through the roof. My sleep has improved, I’m writing every single day, and I also manage four sessions a week on my exercise bike. And once I sort out the flat tyre on my tricycle, I’ll be back on that as well, especially in this good weather. My life has become so much richer, and yet I still berate myself for not walking more, because the overarching message from society continues to dictate that I am somehow worth less if I’m not at my physical best.

I caught a glimpse of a programme the other night, This Time Next Year hosted by Lorraine Kelly, where one of the guests were a wheelchair user and more than anything, she wanted to relearn how to walk using a prosthetic limb. And of course, that was the happy ending of the programme. That was her wish, and she worked long and hard to ensure that wish was realised. Healthwise, it is better for this lady to be walking than to be sitting in a wheelchair all day long. But this particular message – of fixing one’s body or hiding or minimising one’s impairments – seems to be more palatable to a wider audience than the idea that disabled people/people with impairments are perfectly acceptable as they are, and that self-acceptance is more productive and healthier than becoming obsessed with cures.

Technological advances aren’t always the blessings that they appear to be. For example, AI (Artificial Intelligence) can now write content for websites, threatening my job (nooooo!) and the jobs of many other content creators across the globe. Think about it: why should a company pay me for content articles when they could save money and use an algorithm instead? No proofreading needed there, because there is no human error. Similarly, prosthetics and robotic limbs have helped many disabled people regain their independence, but they aren’t for everyone. To ask a disabled person if they have considered prosthetics may come across as offensive, given the struggle that many of us have with our bodies. Technology has advanced to a point where there is now a wheelchair that can scale a flight of steps (not available from the HSE though, I’m sure). Some people think that’s beyond cool. 

But this obsession with finding ways for people to overcome physical barriers puts the responsibility back on the disabled person, which isn’t right. Surely making our world accessible to everyone is a more sustainable and measured approach? Isn’t it weird that we live in possibly the most accepting time in history in terms of sexuality and identity politics, and yet it’s still an act of rebellion to embrace and love one’s disabled self? If a venue doesn’t have ramps or lifts, it’s a safe bet that there’s no Braille, or induction loops for hearing aid users, or easy-to-read menus and promotional material. In the absence of provisions, disabled people are forced to adapt to a world that was not built with them in mind. Because of the inaccessible environment, we are often left on the outside.

We are all getting older. People are living longer, making them susceptible to illness and disability. COVID have left many people wrestling conditions like Fibromyalgia; it’s estimated that 20% of those recovered from COVID have Long COVID or lasting effects from the illness. The pandemic reminded us of the frailty of the human condition. Why are so many people obsessed with finding a “fix” or a “cure” for disabled people in a world that is so broken? And in an age of social media, will it always be an act of rebellion to be our true selves?

Should I Be Fixed will be on BBC Reel on 21 June 2023.

Progress is progress is progress…

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So, it’s the end of 2018, which in some ways has felt like the longest year ever, and yet I remember sitting here writing last year’s post as if it were yesterday. It’s been a busy year, and here are just some of the highlights:

I did a “Begin your Novel” course in January, and I now am 26,000 words into Draft 2. Maybe I’ll finish it before I die.

I had a couple of job interviews, none of which resulted in me getting a job. May I respectfully ask how in the name of chocolate are you supposed to get experience if you need said experience to get a job? Grrr. Grrr.

I threw myself into promoting Independent Living, which I still think is one of the most important philosophies in the whole world, as it recognises disabled people as equal citizens with rights and choices. I blogged about it and also made a video as part of the #IndependentVoices campaign. I also got to work with some amazing ‘young’ people (I don’t believe I fall into this category anymore) and found out that the future of the Movement is in their capable hands. In September we had the launch of Independent Living Movement Ireland, formerly known as Center for Independent Living Ireland.

I applied to be on the UNCRPD supervisory committee, but was not selected. I did get an interview though which was a huge honour.

I gave two lectures to university students – one about the use of technology to students in NUIG via Skype and the other was about parenthood and disability to UCD students (which was a bit impromptu as I stood in at the last minute for a friend who couldn’t make it). Nerve-wracking to say the least.

I wrote an open letter to An Taoiseach Leo Varadkar which was published in the Tullamore Tribune and also read out on Dublin South FM (Ger Scully and Sean O’Kelly, if you’re reading this, many thanks).

I started the Certificate of Disability Studies in NUI Maynooth in October, arrogantly thinking it’d be a piece of cake only to find it’s actually pretty intense with a lot of work and reading involved – oops! It’s so much more than getting the piece of paper for me, though. I want to understand the roots of the oppression of disabled people so that I know how to fight against it.  That said, I need  to stop speaking out in class. I’m coming across as a know-it-all and I will find myself getting beaten up for my lunch money. (If I don’t pass it, I may cry)

I’ve semi-committed to writing another monologue in the New Year with the talented Peter Kearns (Once this course is finished, though – my head is melted)!! Hopefully it materialises.

Oh, and I’m kind of doing some driving lessons! Think the instructor is a little dubious as to whether I can actually do it or not… only time will tell! Fasten your seatbelts!

And finally, I just about managed to keep this blog active (though don’t expect too much before my course finishes in April. Three essays and a group presentation will eat my time). Thanks to all my loyal followers for liking and sharing this pile of drivel. Your cheques are in the post!

Best wishes for 2019! xx

 

Rebel Girls

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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.

 

Do I Have a Choice?

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What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.

 

 

Flying Low

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Readers, this summer my husband, the little ‘in and I decided to ‘staycate’ in Ireland. We spent a lovely week in Galway and then the two of us went north for a wedding towards the end of July. It’s been a nice summer, but now my husband wants to go abroad later in the year. And while I’d love to, part of me couldn’t be bothered with the rigmarole. Believe it or not, it has nothing to do with flying with our  five year old daughter – she’s more sensible than the two of us combined – but rather the worry about bringing the wheelchair with us.

Don’t bring the wheelchair, we’ve been told before. Rent one instead. Well that’s all well and good, but the truth is I like my wheelchair. I’m used to it, I personally don’t think it’s overly bulky or heavy (125kg),and it means in the airport I can take my time, if I check in early. Admittedly, however, I’ve only brought it once, when we went to Salou in 2015.

This was with Ryanair.

I am not exaggerating when I say I rang their customer service a thousand times to give the specifications of the wheelchair – the weight, make, dimensions and the fact that it had a dry-cell battery. Oh, and the fact that the back folded down. And it was, after all the phone-calls and emails, a hassle-free experience.

I have an Invacare Kite. The same wheelchair as my friend Dani McGovern.

Dani was in my house last Wednesday. She’d called over with her husband John and son Logan and we chatted about how excited she was about little Logan’s first time on the plane (they were going to Birmingham for the weekend with her sister, her brother and their kids). They’d only been away as a couple in Lanzarote  a few months before so they had no reason to believe there’d be any issues this time either.

But when I read Dani’s sister Sharon’s Facebook status yesterday afternoon, I immediately felt sick. The story, which Dani shared with the Irish Independent today, was that there was no issue with Dani’s flight over to Manchester, but on the way home she was asked for the voltage of her battery which she was unsure of (Neither of us have been asked this before. You’re normally asked if it’s a dry or wet cell battery. Wet cell = no flysies. Ours is dry cell). She was given the option of flying without the wheelchair (Dani can’t walk, unless she’s harbouring a secret I don’t know about) or getting off the plane.

Can you imagine being told that your legs were going to be amputated or somehow decommissioned? I’m talking shite now, aren’t I? That’s how much sense flying without Dani’s wheelchair made. So really she had no option but to disembark the flight, leaving her husband and her young son (who, like any two year old, went beserk without his mammy in his eyeline) and wait for the next flight, an hour later, where by some miraculous intervention her chair suddenly wasn’t a ticking time bomb and she could fly! Makes sense, doesn’t it? (Just like my handwriting).

What wasn’t detailed in the article was that this isn’t the first time Dani’s been messed around when flying. We went to Mallorca in 2007, Dani, John Paul and I, and we’d brought Dani’s manual chair for me because taxis over there don’t take electric wheelchairs of the size Dani’s was at the time so we thought we’d have her small one for taxis (and for me if I got tired). Good thing too, because when we landed, the cabin crew arrived with the manual chair but there was no sign of the electric one! Panic is not the word, lads – it was like we’d lost a limb. Eventually it reappeared on the carousel – how it got there I haven’t a clue. In the meantime. our accessible taxi had threatened to leave without Dani, in a foreign country where we knew no-one.

Dani never went to the media about that, and she was within her right to. But if she had not gone this time around she would’ve inadvertently been saying that this treatment is ok, that it was somehow her fault. But it isn’t, and was not.

In short. Dani is more than ‘a girl in a wheelchair’. She’s a college graduate, a woman who’s been living independently since she was nineteen, a woman who’s worked hard to prove herself in every way, and in spite of some negative running commentary is a fantastic wife, loving mother, loyal friend and passionate advocate. She certainly didn’t deserve that treatment.

And in telling her story, she is reminding us that none of us do.

Just Catching a Train (in 24 hours)

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I’ve a meeting in Dublin on Wednesday. It’s straightforward  getting there: if you’re going the public transport route, you simply get a train to Dublin, then regardless of whether you come into Heuston or Connolly Station, you can catch the Red Luas to Smithfield and then it’s a ten minute walk. Easy peasy. Shouldn’t be complicated at all, right?

No, it shouldn’t. But this is Ireland, and we seem to have a tendency to make things more complicated than they need to be. And for people with mobility difficulties, public transport isn’t as convenient as it is for others.

I went down to Tullamore Train Station this morning (according to the Irish Rail website, passengers needing assistance are ‘advised’ to give twenty-four hours’ notice) to let them know that I intend to travel on the 09.29 from Tullamore to Heuston on Wednesday morning. I admit I did it as a bit of joke, to make a point. The guy who works there is lovely – I’ve nothing against him as a person – but he was reluctant to guarantee that I’d have assistance on Wednesday afternoon coming home. ‘If I’m here, I will definitely help you,’ was his response. If.

The assistance I, and many other wheelchair users need, is simply the provision of a portable ramp to enable me to disembark from the train safely. That’s all. In my case my chair is electric so there’s no manual pushing involved. But without the provision of a ramp, my independence is immediately compromised.

Okay, I admit that giving two days’ notice is a tad dramatic. But my attitude isn’t without basis. Just last month, a young  wheelchair user got stranded on Platform 2 of Tullamore Train station and had to wait 30 minutes before it was decided that the train should pull into platform 1. The lift was out of order, as is often the case in Tullamore.

I’ve been stranded on a train twice before in my wheelchair because there wasn’t assistance waiting for me at the train station (and I always give as much notice as possible – okay, not always twenty-four hour notice, but I do try). It’s very annoying having to get off at the wrong station and either get a train or a taxi back. It eats into our time and financial resources. Our time isn’t viewed to be as valuable as everyone else’s, I don’t think.

Impairment doesn’t create inequality, society does. Having to give twenty-four hours’ notice to use a train is discrimination and yet, in spite of the many complaints made in relation to accessibility to Irish Rail (according to thejournal.ie, there were 12 complaints about accessibility in 2014. This 12 merely represents complaints made, not necessarily the number of passengers who experienced problems with regards to access), things seem to be getting worse, not better, for disabled passengers.

I’m not alone in experiencing these problems. Last year a friend of mine and wheelchair user, Ann Marie Champ, was denied assistance in Newbridge train station and was forced to continue to Kildare. (Ann Marie works in Dublin and commutes every day). Once in Kildare she had to wait for a taxi to arrive from Portlaoise to bring her to Newbridge. An enraged Ann-Marie remarked, ‘I flew to Australia last year and had to get six flights and had no issues. It only took five minutes over the phone to organise. Yet, I can’t get 20 minutes up the road because of the refusal to lower a piece of aluminium.’

Louise Bruton, the founder of a blog/accessibilty guide called Legless in Dublin, also had trouble with Irish Rail last November when the assistance she had requested in Heuston Station didn’t arrive, leaving her stranded on the train for twenty minutes. ‘The train was stopped further down the tracks than normal and the lights were dimmed, so I was in a scene from a 1990s teen horror flick,’ she told the Irish Independent. “I stuck my head out the door… I shouted again and again and all I could hear in return was my echo. I pressed the train’s emergency button but nothing happened. And then I tweeted. My responses gave me the emergency number for Heuston and, thankfully, Heuston’s very apologetic station manager, Liam Donegan, answered my call and rescued me.’

Ann-Marie and Louise’s experiences show that there is no dignity in travelling when you have a disability in Ireland. And now it’s been proposed by a Cork TD that travel pass holders should pay a subsidy of €6 for travel! For disabled people at least, this is outrageous. Many of us don’t drive and are solely dependent on public transport to get around. And even if was decided that €6 was reasonable, this still wouldn’t mean that disabled passengers would be guaranteed worry-free, hassle-free journeys.

I’m afraid I don’t have definite answers to these ongoing issues. There’s no doubt, however, that these practices are discriminatory. People need to continue to be vocal about this issue, because for me, as a contributing citizen, this isn’t good enough.

In the meantime, fingers crossed that I get to and from my meeting in Dublin on Wednesday, without incident!

Throwback Thursday: The Others

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I’m going through a bit of a writer’s block situation at the moment, trying to work through the messy middle of my novel and fix it into something that ties in with the ending. My concentration’s letting me down though, so instead I thought I’d look up the animation my sister did for her final year project, nearly six years ago, The Others.

The message behind The Others is that it is society that disables us and moulds us into a state of dependency. The piece is voiced by my good self and Dani McGovern, a friend of mine who also has Cerebral Palsy. Note how the negative narrative of the piece disables the two women, and distorts the physical form.

This is the exact message I want to portray in my novel, if I can ever get it written!

Anyhoo, enjoy!

Credit for this piece belongs to Laura Maye.