I’m only human, after all…

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TMI alert, people: I’m currently in the middle of my, shall we say, ’emotional’ time of the month. And as every woman out there knows, during this period (pun intended) we can become irrationally angry or overwhelmingly emotional for no apparent reason (but hey, isn’t that what chocolate is made for?) Anyway, there is a point to this, I promise. Stay with me.

My husband, my daughter and I were travelling in the car on Monday when ‘Human’ by Rag’n’Bone Man came on the radio. Of course, being an emotionally unstable female, I was instantly in floods of tears, much to the surprise of my husband who nearly crashed his car in shock.

‘What’s wrong with you?’ he blurted out, while I wiped my tears. I shook my head.

‘It’s crazy time again,’ I joked as I tried to compose myself. But there was more to it than that, and he knew it too. And I didn’t have the words to explain. I do now, though.

The energy of the song and the repetitive line ‘I’m only human after all’ brings to mind what’s been going on in the media over the last few months with the remains found in the septic tank at the Mother and Baby Home in Tuam. Like many of us I feel sick as I think about all those women, both young and old, who gave birth to their babies and never knew what became of them. It’s likely that some, if not most of these pregnancies were unplanned, and instead of being supported these women were disgraced, disowned by their families, and left in the hands of the nuns. You’ve read some of the stories, I’m sure. It’s truly harrowing stuff, and it’s been playing on my mind for the last two months.

How can we claim to be compassionate when we don’t even allow people to be human?

I live in a country where my rights as a person with a disability are not protected. This is because something called the United Nations Convention on the Rights of People with Disabilities (or the UNCRPD) hasn’t been ratified by the Irish government. In theory, this Convention guarantees that no person with a disability should be forced to live in an institutional setting against their will. It guarantees access to Personal Assistance as a right, not a privilege. Those who have ratified the Convention (and Ireland is the only EU country that hasn’t) are answerable to the UN if human rights are breached. With constant threats of cuts to PA hours and people with disabilities having to give twenty four hours to use public transport, Ireland would certainly have a lot to answer for.

What upsets me the most is when you have a disability, you’re not allowed to make mistakes. Everyone makes mistakes, takes wrong turns and yet, when you have a disability you’re either expected to be some kind of Superwoman, or an utter failure. If you make a mistake, well, obviously you’re not cut out for education or parenthood or whatever it was you were trying to do. People judge each other; I’m no different. But this pressure to live up to an arbitrary standard, set by people who may have no experience of disability, is overwhelming. As my loyal followers are aware by now, I came up against intense pressure to prove myself when I had my baby girl. And as you may be aware, I never sought help for my postnatal depression which lasted two and a half years because I was afraid that, combined with my disability, it would give the HSE the authority to take my daughter.

And my overwhelmed, hormonal, PMSing self thinks this is truly unfair. I feel frustrated and tired with it all, and I only wish there was more I could do to challenge this injustice, to stop history from repeating itself. Sometimes I wonder if life would be easier if I wasn’t so sensitive, so stubborn, if I just didn’t care. But the truth is, I do care. A lot. Too much.

But there isn’t much I can do at  eleven at night, and I’m pretty stuffed from that Easter Egg I’ve just polished off…

Hey, don’t judge me, I’m PMSing.

…and I’m only human, after all…

Cripping Up: Useful Exercise, or a load of Crap?

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Earlier today my daughter, who is growing increasingly aware that her mummy is different to other mummies, asked me if I could walk properly when I was a little girl. ‘Nope,’ I told her, ‘My walking was pretty rubbish when I was a child too, but I didn’t need a wheelchair.’ She was silent for a second, then she said, a tint of sadness coming into her otherwise unblemished face:

‘Some of the girls in my class make fun of you. They say “ha ha, your mummy can’t walk properly.”‘ For a second, my heart stopped. This is the conversation I’d dreaded having with my daughter since the day she was born.

As nonchalantly as possible, I prodded. ‘And what did you say?’

Alison shrugged. ‘I said “don’t make fun of my mummy, it hurts her feelings” but they didn’t stop. I didn’t like it mummy. I would never do that to anyone.’ She was so absolute in her defence of my that it made me want to cry. ‘Mummy,’ she continued. ‘You know I don’t care if you can’t walk properly, or you’re in a wheelchair. I love you and you’re the best mummy.’ I sat, reeling. Where the hell had all this come out of, all of a sudden?

‘School,’ my friend said when I told her the story. ‘Kids learn all sorts from each other at school. They learn to see things differently, to question things, and most worryingly of all, they trust what each other says.’ This isn’t my first encounter with schoolkids of course; once upon a time, in the very same school in fact, I had the honour of dealing with this sort of thing first hand. And while some of the comments hurt (and they did, because I was an impressionable child, just as Ali is now), others were downright hilarious. One particular time I caused grievous injury to a classmate who was enjoying imitating my walking and consequently whacked herself off a door. ‘I never do that,‘ I laughed. And bingo, humour became my new method of self-defence. To be fair, it’s lasted pretty well.

But what has always interested me, even from my prepubescent years, is how people tend to be so fixated on my impairment and how they see it as problematic. ‘Do you ever wish you didn’t have Cerebral Palsy?’ is a question I’ve been asked more times than I’ve had hot dinners. My answer has always been the same, but it’s only in recent years that I understand why I’ve always said no. Cerebral Palsy, and any other disability for that matter, only becomes problematic when others are uncomfortable with it. Impairment and disability are different things. Impairment is a condition or diagnosis, and disability is the collective term for physical and attitudinal barriers facing people in society. I’ve lost you now, haven’t I? Allow me to explain.

My impairment wasn’t the reason why gaining entry to mainstream school was a battle, but the lack of supports available was.

My impairment didn’t stop me reaching third level education because I was enabled through Assistive Technology and Personal Assistance to do so. I used these as tools to unlock my potential.

I built a ramp on both sides of my home so  that I could consequently get a wheelchair to enable me to be independent and get out of the house. A lack of ramps would hamper my freedom, not my impairment.

My heart always sinks whenever I hear the words ‘disability awareness training’ because it often involves so-called ‘able-bodied’ people ‘cripping up’ to try and get a feel for what the world is like for a wheelchair user. With all due respect to those  of you who think this is a good idea, it’s not. Often, it involves able-bodied people using oversized or unsuitable wheelchairs and trying to navigate a physical environment. It’s an unrealistic portrayal because wheelchairs for full-time wheelchair users are designed for their specific needs. While doing something like this, you get a flavour of what it’s like to use a wheelchair to get around and the physical challenges involved. However, you cannot possibly be expected to know what it’s like to carry the burden of a history of hundreds of years of neglect, discrimination and degradation.

It creates awareness, as Kathryn Thomas did on The Late Late Show on Friday 7 April. Everyone knows her face. She was selected to create awareness of the barriers facing wheelchair users in Dublin. It got a great response from many people, saying that it was great to see this issue being highlighted at last. The reality is that people with disabilities have been saying these things for years. And yet, many wheelchair users, including Louise Bruton, who reviews access in Dublin for her blog, Legless in Dublin, was not asked to participate. She wrote an article for the Irish Times before the Late Late aired in which she said: ‘These pieces are a gimmick and if they help change the minds of a few people, then that is great, but they remove us from the discussion. By doing this, we are passing the baton and the opportunity to go deep into the experiences of a wheelchair user is missed.’

Blogger John Doyle was more direct in his criticism of this approach, saying in his blog: ‘Would your celebs paint themselves black and claim the understand racism? No they would not. Did John F Kennedy mimic being a different ethnicity to highlight racism? No he did not. He acted with legislation because he lived in a country that had one rule equality for one section and a rule of inequality for others’. We still haven’t ratified the United Nations Convention of Rights for People with Disabilities, which would mean so much more than a celebrity endorsement.

And why do we need celebrities to highlight the issues that we disabled  people have been discussing for years? The answer is simply we don’t – but for some reason our voices seem to only matter when they’re endorsed by politicians, celebrities and the likes. I wonder is this because people don’t want to know about the nitty-gritty of the discrimination disabled people face, or is it because they feel they can relate to an able-bodied person better? If that’s the case, will our voices, our own voices, ever be heard?

Because I don’t want my daughter answering questions about her ‘different’ mummy forever. I hope that one day she will be wise enough to say ‘You have a question about my mummy? You ask her yourself. I don’t speak on behalf of her, or anyone else.’

Mother’s Day Hunger

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Tomorrow is Mother’s Day. Normally I’d anticipate it coming but this year it just hit me out of the blue. ‘Happy Mother’s Day!’ shrieked Alison on the way out of school on Friday afternoon, waving yet another piece of brilliant artwork. And it is brilliant; you can see the improvements in the detail of the people she draws. They’re no longer stick people, they have trousers and dresses, eyelashes and even bracelets. She’s growing up every day, because of me, or in spite of me – I’m never sure which.

We spent the whole day in town together, and after the two hours in the park decided to pick out something for her two nanas’ graves. We eventually found something vaguely acceptable, but as I surveyed them, something sank in my stomach. It’s not only the feeling of loss that comes with every Mother’s Day when your mum passes away. This was a very real but unreasonable sensation. I’ll try to explain.

Every Saturday if the weather’s good, Ali and I will go for lunch, a kind of mother/daughter bonding activity. It’s become a habit, a ritual, one I used to look forward to (I love cooking  but hate the clean-up after). Now, however, the novelty has worn off and I’ve started making dinner at home more. My cooking is nice, but also there’s nowhere in the world that will ever serve food the way mum used to make it. Sausage stew, roast pork, ‘twice-baked’ spuds filled with ham, onion and cheese, cheesy veg, lasagne (I’m salivating here and it has nothing to do with my Cerebral Palsy). I know it sounds ridiculous but even if I followed recipes the thought of never eating her food as she cooked it hurts. I’m hungry for the nice food.

And as with every Mother’s Day, I’m hungry for her.

I’m hungry for the ridiculous fights we had on countless Mother’s Days when she used to insist  on cooking dinner (probably for the same reasons that I can’t seem to find a nice restaurant these days – she liked her own food) after which she would moan incessantly about how nobody helped her even though she liked doing things her own way and she had previously insisted on cooking alone.

I’m hungry for the ridiculous squeals of appreciation at presents we got in the Pound Shop that she’d probably given us money to buy (wow, just what I need! A stuffed penguin!) and the feeling that no matter what you got her it would never compensate for the job she did as a mother. And her smiles as she opened the cards and cooed over our artwork.

I’m hungry for who she could’ve been, whether that might’ve been a famous interior designer, a ‘hip’ nana or a grumpy curmudgeon and I often wonder what she would have made of JP and I having Ali, and whether she would’ve insisted that she wasn’t an on-call babysitter with one breath and threatened to adopt my daughter with another. I wonder if she would approve of my choice to leave a paid job and enter the murky world of freelancing, or if she’d be embarrassed by my seeming laziness. She certainly wouldn’t approve of the wheelchair, but I also know that she kind of, sort of, trusted my ability to make sensible decisions.

I’ll never know what she did and didn’t approve of. I only have one regret, and that is how hard I was on her, how much I expected of her. Being a mother is hard work and scary sometimes, and sometimes she had bad days like us all, which she tried to hide from us. When I was small, I thought my mum was invincible, and even when I was told at the age of twenty-five that she had passed away, I said ‘no, sure try waking her again, she’s just a very heavy sleeper(!!!) (She slept through a bomb which demolished some of her house in Cookstown at the age of fourteen).  I, like all of us, took her death hard, and when my own daughter was born three years later, I panicked. How was I going to do this without the support of the woman who had such a major role in who I am today? And yet, I did, sort of. Call me crazy but during that time I had to believe she was close by otherwise I would have crumbled altogether.

Now, my grief is more reserved, but it won’t stop the tears on a day like tomorrow. Yet tomorrow too will come and go, feelings of happiness and sadness intertwined with begrudging acceptance. I think one of Mum’s favourite country and western singers, Kathy Mattea, puts it more eloquently than I ever could:

‘We’ll never know what could have been, but looking back we see
What could have been, and never was, was never meant to be.’

Now there you go mum, your own Mother’s Day blog! No ‘I wish heaven had a phone’ memes for you! xxx

 

 

 

Wheel Independence

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My poor, sad, neglected wheelchair (sad face)

 

 

I have really missed blogging here for the last two weeks (I’m back, yay), but to be honest, I just needed a break. I felt wiped, depleted and I know from hard  experience that when I feel like this it’s better to take a breather rather than having a meltdown and sobbing in my jammies at the side of the canal at 4.30am (ahem, apparently). I have been busy though with activism, and I got my submission in to Date With An Agent (I hope – I never enclosed an SAE to acknowledge my entry but I know my  future award winning novel will totally be selected), so that could account for why I’m that little bit more tired.

Or maybe it’s because for the last month and a half, I’ve been without my electric wheelchair, and the extra physical effort of walking everywhere is taking its toll. And thank God it is finally getting fixed tomorrow, because I am wiped.

My dear mother, who spent the first five years of my life doing physio with me every morning, was dead set against me using a wheelchair. We lived in a two-storey house when most of my disabled friends lived in bungalows. She wasn’t too keen on me having a wheelchair in college, although she understood the reasoning behind it. Growing up in a mainstream world led me to believe that one’s value was largely based on their physical ability to do things and to get around.

When I had Alison, my friend advised me that I wouldn’t want to miss out on doing things with my daughter, and so I got myself an electric wheelchair. Being ambulant I don’t think I’d have any chance getting one off the HSE. And for the first time since becoming a mother, I wasn’t housebound. I could take Alison for walks whenever I wanted, long walks and still have the energy to come home and do some housewifey things, and write my masterpiece. This is why the phrase ‘confined to a wheelchair’ annoys me so much. A wheelchair doesn’t confine, it liberates! Without it, I feel confined, trapped within the limitations of my body.

I firmly believe that when we are given access to tools like wheelchairs, technological aids and Personal Assistance, we are enabled to become the best us we can be. There is great strength in acknowledging that your physical impairments are not the problem, that society needs to address the needs of people with disabilities and be more inclusive. Above all, I believe that people with disabilities need to drive this change themselves.

It came to my attention over the weekend that student Kathleen McNamee, senior editor of the University Times, ‘cripped up’ or explored Trinity College campus in a wheelchair. What’s wrong with this, you might ask. Isn’t it great that people without impairments are trying to see the world through the eyes of a wheelchair user? Well firstly, Kathleen is not a wheelchair user; at the end of her article she wrote: ‘While I will be happy to hand my chair back tomorrow morning, I am also aware that not everyone is afforded this opportunity’. To me this implies that she sees the ‘problem’ as the wheelchair,  not the inaccessible environment. Also, why did she have to ‘crip up’? Why didn’t she look for the experiences of full-time wheelchair users who navigate the campus on a daily basis?

Secondly, I felt that the article was a little unfair on Trinity. When I carried out an access audit in 2004, we identified all of the problem areas and efforts have been made to fix things: the pathway through Front Square, there’s now a lift up to the Pav (the on-campus watering hole) and ramps to the buildings in Front Square. Things are far from perfect, but they’re improving.

Irish Rail, however, seems to be getting worse. A friend of mine told me recently that on principle she refuses to give any train station 24 hours’ notice of her intention to travel because she sees herself as equal. Today I had to travel by train (I had no wheelchair, just my rollator) and didn’t give notice, so I had no reason to be disgusted when assistance didn’t appear in Tullamore (even though I rang an hour beforehand), leaving me no choice but to fling my rollator and myself off the train. Had I been in my wheelchair I’d probably be writing this from Galway!

So to summarise, I’m looking forward to my wheelchair being repaired in the morning and to getting my independence and energy levels back. My normal life back. I know I should make more of an effort to get fit, and some might think I shouldn’t be so lazy. Feck that. My daughter needs a mummy who has the energy to do things and go places with her, and I need the energy to write, and that’s exactly what my wheelchair offers. It doesn’t matter how you get there, as long as you do!

Apologies for absence!

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Hello to my adoring fans! I hope you are all well.

Hoping to get my blogging mojo back soon (probably will as soon as I’ve posted this, lol) but may not be around for a week or two owing to other projects like my first commission of the year (Watch this space), trying to submit something for A Date With An Agent (for which I fully expect to be selected of course) and another blog in progress for an activist group called By Us With Us. We’re a new group made up of  people looking back on the history of the Independent Living Movement and joining together to face the future. You can visit our blog here.

But don’t worry: as Arnie says, I’ll be back…….

How Many More Graces?

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I go through phases, extremes of mood and thoughts. Sometimes I’m elated. I love writing. I know I’ve made the right choices in life. Other times I worry that I’m making myself increasingly unemployable as the days go past.

I haven’t really left the Centre for Independent Living behind, of course. I still volunteer a lot of my time to promoting the philosophy of independent living and campaigning for equal rights for people with disabilities. In fact, I’m now part of an activist group called By Us With Us. we’re still relatively new, but we recently set up a blog which is well worth a look.

Independent Living is not my job any more, my husband insists. You’re a writer now. You should be dedicating every free minute you have to writing and trying to get published.

And oh, how I would love to! How I wish life could be this simple, that I could have the luxury of locking the office door every day, focusing on nothing but putting words down on paper. My  mother used to tell me that I can’t fix all of the wrongs in the world. She was right, of course, but there are so, so many wrongs that I feel that I must try and do something;

As most of you know, I’m writing a novel at the moment, a story that initially came to me in 2007 while I was unemployed for six months. The story explores the life of a disabled woman who was tortured by a nun in a residential institution and how she copes with the aftermath of that abuse. Lately, I’ve been finding it hard to stay motivated. This is off the wall, I thought to myself as I rewrote the first chapter the other night (for the sixth time). No-one reading  this is going to believe that someone could be treated with such cruelty.

I’m not a trusting person anyway, and I’m sure I’m not alone in this distrust, particularly in the government at the moment (or, as it is starting to transpire, any government before or after this). Yesterday, the story of the abuse suffered by ‘Grace’ dominated headlines, a girl with an intellectual disability (now forty years old) who was abused while in foster care. It’s still a little unclear the extent or the nature of the abuse; some of it is of a sexual nature.

Grace has an intellectual disability and in the eyes of the Irish state at least, cannot be trusted to have her own narrative voice. And in Ireland, this is not limited to those with intellectual disabilities. The opinions and lived experiences of disabled people in Ireland don’t seem to matter to our policy makers.

I doubt that Grace is an isolated case. So why is there such little uproar about the status quo? There is mounting evidence to illustrate that disabled people should not be living in institutions, that the state cannot be trusted to provide a decent standard of care. Who can?

In December 2014, the nation was shocked by the Aras Attracta scandal, which saw people with intellectual disabilities being physically and psychologically tortured by those who were meant to care for them. People were disgusted by the RTE documentary; at one point my husband, whose stomach was turning, asked me to turn it off. I refused.

‘How can you sit there and watch that?’ he asked, bewildered by my seeming nonchalance.

‘Because,’ I replied, ‘Ireland has buried its head in the sand for too long. We have a government, and this and successive governments not only allow this abuse to happen, but by implementing cutbacks create situations such as these. We need to see this and someone needs to take responsibility.’

The Aras Attracta staff were later held accountable and given paltry sentences of community service. But what happens to those who continue to abuse people with disabilities behind closed doors, and are never questioned? I’m not talking solely about people in congregated living settings – I’m talking about people who suffer abuse at the hands of their families too.

When I started doing some research for my novel, what struck me was the lack of information available about how disabled people were treated in Ireland over the last fifty years. Apart from a few research papers, the Irish Wheelchair Association’s collection of stories, Extraordinary Lives, and this documentary on the programme ‘Horizon’ called ‘The Weakest Link’ on RTE in 1966, there isn’t a lot of documented stories about what life was like for a disabled person, particularly in a residential setting. So essentially I’m writing a story about something I have little information.

But if I can achieve this, then I will be happy. Because it’s time for disabled people to tell their stories, and to discover and reclaim their histories.

If we don’t, then our stories will be like Grace’s – spoken through the mouths of people on the outside.  Our stories should – and deserve to be – woven into the mainstream fabric of Irish society.

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.

#CripLivesMatter

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Over the last few years, there have been a number of bizarre occurrences in Ireland, a lot of which coincided with the recession of 2008. Suddenly, what was once one of the most prosperous countries in the world collapsed as housing prices plummeted, and unemployment and emigration soared. Headlines of doom and gloom swept the nation. And in the disability sector where I worked at the time, the most feared words were ‘cutbacks’.

The narrative at the time was that Ireland was on its knees, at the mercy of Europe. Everyone was expected to pay in some shape or form for ‘the good Celtic tiger days’ that the whole of Ireland enjoyed (read: the elite few). That period was almost identical to the dark world depicted in George Orwell’s 1984, where people believed everything that the media told them, where the written word controlled the psyche of a nation, keeping them in fear. None more so than people with disabilities.

It is estimated that disabled people in Ireland have lost 17% of total funding to vital services during recessionary times. The supplementary cost of medicines to medical card holders rose from fifty cent to two euro fifty overnight. The threat of cuts to Personal Assistant Services moulded us into a state of fear, undoing the good work of the activists who had fought tooth and nail almost instantly. It seems that the needs of disabled people are only important when there’s an overflow of money or a photo opportunity to be had by some politicians. (I hasten to add, not all politicians. Here in Tullamore our elected councillors are doing great work with us and bringing about real change).

Today, we live in a country where we don’t trust our elected leaders, where we have been screwed to the wall time and again. We look across the pond and condemn Trump’s behaviour, shocked when footage of him mocking a disabled reporter emerged during his election campaign. We despair at his behaviour and fear that he is creating irreparable divides between people.

But at least he’s open about his controversial policies. He’s not pretending to be a nice guy, conning people with his smarmy charm like Enda Kenny does. At a disability protest nearly a year and a half ago in September 2015, Enda went to ‘speak’ with the protestors and avail of some publicity. Offering Martin Naughton a cup of coffee when Martin was clearly unable to hold a cup independently was a clear illustration of how out of touch this government are with the realities of disability.

Having a disability these days is a little like  living in a dystopian novel. We live in a world where we are expected to conform to the ‘norm’. Our voices are either taken away from us, or distorted to make us seem either piteous or courageous. What we are fighting for are equal rights. At the moment we are not equal because we are different; we are the problem. However, the United Nations Convention of the Rights of People with Disabilities(the UNCRPD) recognises that our society has a duty to enable us to make a real contribution as equal citizens. Unfortunately, Ireland has not yet ratified this, even as a tokenistic gesture, and the uproar about this is real, but somewhat sporadic.

That’s why when I read this blog about the Women’s Rights Marches and the support it had from so many people that it saddens me that disabled people in Ireland have yet to do the same. Don’t get me wrong – there are so many activists out there who are genuinely trying to change things – but it seems to me that we are all a little fragmented right now. Part of this may be due to the fact that we face our own challenges every day, and sometimes these seem so insurmountable that we forget that others face the same challenges.

Only we have the power to change this depressing narrative. I’m sick of talking about it, and sick of living it.

Our lives matter. We matter. Achieving true equality in Ireland matters. As I wrote in an earlier blog, we have marriage equality, so equality for those with disabilities should follow.

And the time is now. No more excuses.

We matter, and deserve to have our voices heard.

Be my Valentine …

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Love it Karen – direct and from the heart x

beatingmyselfintoadress's avatarBeating Myself Into a Dress

valentine-post-it A Valentine’s love post-it from about six years ago my husband left for me on the inside of a press so I’d see it when I opened the cupboard to make my breakfast. It’s still there!

I think I write a variation of this post every year on here, or if not here on my Facebook page, so you’re probably all sick of me waffling on, but hey, tradition is tradition so here it is.

I like Valentine’s Day.

It seems it’s a bit of a novelty these days to admit that you like Valentine’s Day, that you get some pleasure out of the day. In every newspaper and blog, in online forums and in real life people poo poo Valentine’s Day, giving out about commercialism and overpriced tat and forced love.

And you  know, I get it. I do. Because in a way they’re right. Nobody needs a six-foot…

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