Category Archives: Disability

Enda the Line

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Finally, after what seems like an inappropriately long wait, Enda Kenny stepped down as party Leader of Fine Gael at midnight on Thursday 18 May, and a new party Leader will be announced by the 2 June.  And predictably, many people in this country, including myself, are reflecting on the work (or damage, depending on who you’re talking to) he’s done over the course of his time as Taoiseach. Many of us will not be sad to see him go, especially the many people with disabilities that he’s let down so badly over his term.

Now, I am not saying that by any means that Enda had an easy job. Nor am I denying the fact that his predecessors, Bertie Ahern in particular, left a massive mess behind that Enda would have to clean up. However, during Enda’s time as Taoiseach, I have witnessed a frightening change in the narrative of disability in this country. Perhaps it’s merely age-acquired wisdom, because I don’t remember feeling this trapped as a disabled person during the early noughties. I went to college, I found it easy enough to find summer work and for a very brief period, I was even naïve enough to view myself as equal: willing to contribute to society and worthy of respect for it as a result.

I was just watching an interview activist Joanne O’Riordan had with Gay Byrne’s RTE series The Meaning of Life, in which Joanne discussed her experience with Enda Kenny. Kenny had promised her that the funding for P.A. (Personal Assistant) Services would remain untouched, and then turned around and delivered the blow that a whopping €130million would have to be taken from the HSE Budget, including a €10m cut to the P.A. budget. This soul-shattering announcement demonstrated how little our Taoiseach thought of our lives. This announcement drove activists with disabilities to sleep out in the cold for three days outside Leinster House until these cuts were reversed. It was both a victory and a slap in the face for people with disabilities, because although we were listened to, we realised that we would always have to take drastic measures to have our voices heard.

I worked in the area of Independent Living for seven years, and Enda Kenny was Taoiseach for four of those (since 9 March, 2011). Part of the reason I made the tough decision to leave my job in 2015 was because I found it too difficult to watch, as I saw it, the degeneration of the Independent Living Philosophy. When I joined Offaly CIL first, I was told to have passion. I was encouraged to get excited about equality for people with disabilities, to see the Personal Assistant Service as the key to achieving this equality. I was told that Independent Living was about freedom, control, choice. It was a liberating service with its own unique history and philosophy.

For me, Enda Kenny’s government destroyed all of that. Suddenly, service provision was about a hierarchy of needs, and the service became more about covering the basics rather than encouraging ability and individuality. When I spoke to people about this great ‘philosophy,’ I felt I was lying to them. I would ring my fellow Leaders and ask them to come into the office for a coffee and a chat, and they would tentatively ask me ‘are my hours going to be cut?’ I have to hand it to Offaly CIL, they did and still do resist cutbacks and they go above and beyond to protect Leader’s hours. But it infuriates me that because of Enda Kenny’s nonchalant attitude towards disability that my fellow Leaders continue to live in fear.

I’ll never forget reading the coverage of the three-day protest Martin Naughton led outside the Dáil in 2015 (unfortunately, I was out of the country at the time – yes, I really am just an armchair activist). Martin was asking for the opportunity for people with disabilities to have more control over their own lives by allowing money normally paid directly to service providers to be redirected to the experts, the person with the disability. The protest bore little results apart from a lot of negative press about Enda Kenny, with people by now being so annoyed with him that the focus from the public was more about what a complete tool he is as opposed to what Martin Naughton was asking for (the right for people with disabilities to truly experience Independent Living, in case you’re in doubt). And yet, even after talking to Martin and other disability activists, the future of our lifeline – the Personal Assistant Service – is constantly in jeopardy.

Oh, one more thing – some of you out there think that Leo Varadkar should take over as Taoiseach. And perhaps he should, but I’m personally a bit wary. Aside from the fact that our health system is currently a shambles, a report entitled ‘Make Work Pay for People with Disabilities’ recommends that people with disabilities keep their medical card, as well as raising the current cut-off point of €120 before they start to lose their Disability Allowance. Now, don’t misinterpret me – this is great progress – but given that a report from Inclusion Ireland in 2014 estimates the weekly cost of disability to be €207, it seems that there is a long way to go before people with disabilities can expect a decent quality of life. Also, there is a fear that this system could force people into work that they are genuinely incapable of, a bit like what’s happening in the UK at the moment.

So goodbye, Enda Kenny. Undoubtedly you did many great things for many people across Ireland during your time. You’ll have to forgive the disabled population of Ireland for struggling to remember exactly what they were.

And a quick message for your replacement, whoever you may be: We as people with disabilities have put up with enough shit over the last nine years to last a lifetime. We definitely are not in the mood to tolerate any more. Just thought you should know that.

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.’

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!

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.

I hate to be a burden, but…

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Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

Birds of a Feather

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“Men make their own history, but they do not make it just as they please; they do not make it under circumstances chosen by themselves, but under circumstances directly encountered, given and transmitted by the past. The traditions of all the dead generations weigh like a nightmare on the brain of the living”.

Karl Marx (1979)

 

 

I carry the weight of a dark and cruel history on my bony little shoulders.

Every day, I fight a small battle in some shape or form. Sometimes it’s because somebody has skipped ahead of me in the queue in the shop. Sometimes it’s a waitress asking my husband what I would like for dinner. Sometimes it’s the need to feel that people take you seriously as an activist.

It’s all too easy to forget that I’m not the only one who’s perceived as different, that I’m not the only one fighting for equality in a society that indirectly labels me as inconvenient. If you think I’m being dramatic, just look at the recent coverage of Johanne Powell’s story (Johanne Powell is a mother and carer to her severely impaired daughter, Siobhan). I’m not disputing Johanne’s right to her story, but surely Siobhan, and so many in her position, should be given the chance to somehow tell their story too?

Every time I hear a story, be it about a wheelchair user who couldn’t board a train, or a person living in an institution simply because their home isn’t adapted, I feel an inexplicable anger, and also a sense of being victimised. I always think to myself: what if that had been me? It’s only luck that it isn’t me. And what can I do about it?

I often think about my upbringing and how often my parents used the word ‘fight’, ‘It was a long fight but Sarah made it into primary school.’ ‘It was a fight but we got Sarah botox treatment’ (for my legs, not my face – this is all natural). For many parents, and subsequently children, everything is a fight in a world where cutbacks are the norm. Sadly, parents still have to fight to have their disabled (by society) children accepted into mainstream school. Fight for the supports their children need to excel. And I ask myself – what exactly has changed in fifty years?

Sure, some things are improving – for example, Tullamore is becoming more accessible, students with disabilities are now going onto third level education and employment, sometimes setting up their own businesses, having families of their own and so on. But none of this falls into our laps. It is hard work having to constantly prove yourself in a society that expects little of you. And, *apols for harping on about this,* the fact that the United Nations Convention of People with Disabilities has not yet been ratified nearly ten years after it was signed is a clear indication of how (un)seriously our government views the needs of people with disabilities.

As far as I can see, we have internalised our history – please correct me if I’m wrong, but –

  • The word ‘handicap’ derived from the term ‘hand in cap’ is deemed offensive now, but is technically still correct as every year thousands of people with disabilities live in fear of losing their Personal Assistants, losing benefits and medical cards. As long as I worked in the disability sector, the Disability Federation of Ireland and the Centre for Independent Living made pre-budget submissions (elaborate begging letters) outlining the damage further cuts would cause. Obviously government didn’t care;
  • Despite one damning HIQA report after another, residential homes are still alive and well. Minister Mc Grath reckons that they will all be closed by 2020, but according to a HSE report published in 2011, more people are entering residential home than leaving them;
  • I’m a young’un, but I could safely bet that many disability activists were campaigning and protesting for the exact same reasons twenty years ago as we are now;
  • Disability/impairment is still viewed as one of the worst things to happen to you (cheers for that, Me Before You). it’s a tragedy that you wouldn’t wish on your worst enemy, and wouldn’t it be great if there was a cure, and have you heard of these robotic legs blah blah blah. It seems that cures are more favourable than respect, understanding and acceptance. What does that say about us?

I know that I am the sole author of this blog, but I’m not sure I’d have the confidence to blog at all were it not for the support of all my readers, especially those who have experienced discrimination as I have. So the next time you are raising a grievance, be it because you were excluded from a building or public transport, or because some prat doesn’t think you should be a parent, or because you’re being blocked from getting your dream job, you have a responsibility to keep fighting.

But don’t worry.

You are not alone.

You have all of us behind you.

Poem: Grand Achievements

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by Sarah Fitzgerald

 

Sitting down
Shoes exactly two feet apart
His breath becoming deeper,
His eyes focusing on nothing
But the task at hand.
With determination and tenacity
He held the little piece of plastic
In a pincer grip.
He bit his lip, channelling his concentration,
Ignoring the voices of the past
Swirling around him, whispering in eerie voices
Useless, failure, imbecile, waste of space.
He ignored his leg, which was jumping violently,
Trying to distract him.
His fringe was wet from the sweat of effort,
The pursuit of success. He could not fail.
Another deep breath, and with confidence and inner belief
He successfully
Pushed the button
Through the hole.