An Open Letter to Taoiseach Leo Varadkar

From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).

An open letter to An Taoiseach, Mr Leo Varadkar,

Dear Mr Varadkar,

I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.

Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.

Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.

In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.

As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.

Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.

I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.

I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.

And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.

Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.

Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.

You owe it to us, our families and our children, to enable us to live the best lives possible.

Yours, etc.

Sarah Fitzgerald

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Is Activism A Dirty Word?

Is ‘Activism’ A Dirty Word?

Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.

It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.

Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?

And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?

I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.

About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.

Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.

A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.

‘This is frightening,’ I texted my friend after listening to Kevin.

‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’  And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?

We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!

You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:

‘The only thing necessary for evil to triumph is for good men to say nothing’.

I’d choose activism over evil any day. Wouldn’t you?

Cripples In Crisis

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

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

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

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

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

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

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

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

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

 

 

Kind Gestures

Kind Gestures

It’s amazing what meaningless rubbish you can learn just in mindlessly scrolling through social media. For example, did you know that International Kindness Day is marked on 13th November each year?

Reading this got me thinking about the busy week I had last week. Last Thursday, 9th November last, a delegation of people with disabilities including myself went to meet the Junior Minister with Responsibility for Disability, Mr Finian McGrath in Dail Eireann. The main reason that the meeting was requested by Clare activist Ann-Marie Flanagan was because Ireland is the last country in the EU to ratify the United Nations Convention on the Rights of People with Disabilities. Frankly, the meeting was a farce. Minister McGrath seemed distracted throughout the meeting, and while he could sympathise with the reality of our lives, we felt he could not empathise with our fears. He constantly interrupted us, and we left the meeting feeling that we’d been heard but not listened to.

Reader, I cried on the train back to Tullamore, the train I’d given twenty-four advance notice to travel on. Onlookers asked me if I was okay, and I simply nodded. How could I possibly explain how alone I felt in that moment, the feeling of knowing that deep down the Minister who represented my needs and so many others’ needs at government level had no perception of how difficult it is to be disabled in  Ireland today? I say this with the assumption that if he knew our frustrations, he wouldn’t have been so evasive in his answers. He would’ve assured us that our rights were on the way to being recognised. If the Minister can’t reassure us, then who can?

On Friday, I needed a change of scenery and so I eagerly accepted the invitation of an old college friend to meet for coffee in Lemon on Dawson Street in Dublin. To my delight, the conversation came easy, just as it had ten years ago when I saw her last. We caught up over two pancakes each, and I realised that I’d missed debating the meaning of life with her.

‘So, what have you been up to?’ she asked over the hum of students talking. I told her that I’d had the meeting with Minister McGrath and that I felt I’d wasted my time. ‘You know,’ she said thoughtfully, chewing her omelette, ‘I’ve lived in France and what I’ve noticed is that they don’t really have the concept of kindness there, the way they do here. People are kind here.’

‘Which is a lovely thing,’ I replied. ‘Where would we be if it weren’t for kindness?’

‘Oh, it is,’ she continued, ‘but in France, things are more rights-based. Everyone knows – and gets – what they’re entitled to. It’s not perfect, it’s just…different to here.’

That got me thinking. I don’t know much about French culture, but I’m familiar with Irish culture, and my friend is absolutely right – we are,  as a nation, very kind. The problem is that we depend on kindness and charitableness as a substitute for our rights, and particularly for people with disabilities, this can be problematic. Because of a lack of proper funding in the disability sector disability organisations, for example, the Irish Wheelchair Association, put much time and energy into fundraising. In order for fundraising to be in any way lucrative, people with disabilities are forced to portray themselves as vulnerable, almost desperate. And unfortunately, it’s not a lie. Because of massive gaps in government funding, we are vulnerable and desperate.

However, the CRC and Rehabcare scandals were only examples of why organisations should not rely on charitable donations to fund their services going into the future.  Money is going into inflated salaries rather than direct service provision. Meanwhile, essential services are being cut. On the other side of the coin you have many people with disabilities in hospital beds, costing the State thousands a year, when that money would be better spend moving people into their own homes, providing a Personal Assistant Service and enabling these people, regardless of their disability, to realise their potential.

In our meeting with Minister McGrath last Thursday, we shared some painful experiences with him, to illustrate how a lack of a rights based approach is denying thousands of disabled people across Ireland the opportunity to contribute to society. We urged him to help us to change the narrative of disability from one of victimisation to empowerment.

Finally, when we tried to extract a timeline from him of when the UNCRPD would be ratified, he refused to commit to one, saying that he’d done this last year, ‘and got burnt.’ He wasn’t going to make promises he couldn’t keep, he said.

Even when Ireland does eventually ratify the Convention, our rights as people with disabilities will still be in question.

However, we should do it regardless, not out of kindness, but because it’s the right thing to do.

Kindness is lovely, but it isn’t enough. We as people with disabilities need – and deserve – more than this.

 

The Crumbs from the Table

Hey guys, guess what today’s ranty blog is going to be about? *fanfare* You’ve guessed it – the farce otherwise known as Budget 2018, which was released earlier today (10 October). Though you know what, I’m not actually surprised at how little it helps ‘our people’ (aka us crip-folk) and you know why?

Because the UNCRPD (United Nations Convention on the Rights of People With Disabilities) hasn’t been ratified yet! What’s that got to do with the price of eggs, you may well ask (or not, maybe you don’t give a shite). Well, I’ll tell you, shall I? As long as the Convention remains unratified, disabled people are at the very least being denied the rhetoric to challenge the discrimination and sometimes the cruel and inhumane torture doled out to them on a daily basis!

Our government continually makes excuses for the delay in the ratification of this UN Convention, allowing them to blatantly disregard the human rights violations that are occurring in the meantime. For example, Article 19 of the UNCRPD states:

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

If the Convention was ratified, then the government would have to justify why there are currently over one thousand young people with disabilities and an estimated three thousand disabled people in total inappropriately placed in nursing homes. It would have to explain why funding for Personal Assistance is allocated to the HSE who in recent years, owing to financial constraints, have been awarding the service on the basis of absolute need – in their eyes, accessing work/college, personal care and physio. Gone are the days where a person with a disability could be trusted to be accountable for their own decisions. Instead, a lack of funding has resulted in service users (‘Leaders’) having to justify and account for every minute of their P.A. service. Personal Care trumps all. As long as we’re up and dressed, it doesn’t seem to matter whether or not we can actually go anywhere! This is how people become institutionalised in their own homes, a common problem that is rarely discussed.

There has been no additional funding in this area since 2008, but there has been increased demand for services. As a result, many people are on waiting lists for P.A. hours, some of whom are stuck in hospitals and nursing homes in the meantime. Some of these people are well able to contribute to society, so why aren’t we letting them?

Under Article 15, which states ‘Freedom from torture or cruel, inhuman or degrading treatment or punishment’, Ireland has a lot to answer for. We’d all be naïve if we thought that Aras Attracta was the only serious incidence of cruelty toward disabled people in congregated settings. HIQA, though useful, is very clinical in its approach and the danger is that it may be merely ‘a tick-box exercise’ which doesn’t actually measure the happiness of residents. I have yet to see a HIQA report that recommends that some residents (or most, but not all – I appreciate that) would greater benefit from being accommodated to live in the wider community with support.

If HIQA decide in the future to regulate community services, then they must do so with Independent Living and its components of independence, empowerment, choice, options and rights as the core of their policies. Our government needs to realise that the ratification of the UNCRPD (whatever this entails) must shift the disability narrative from one of charity to  one of empowerment. We don’t want to have to be grateful for government handouts, but we are never going to be able to contribute to society in a meaningful way unless we’re enabled to do so. And this must happen through investments in the services we choose.

We want rights, not charity.

We want all the cuts made to disability services reversed, as well as additional investments. Because after today’s budget, people with disabilities are no better off than they were ten  years ago.

I’m sorry, but the crumbs from the table just aren’t good enough anymore.

 

 

 

Delicate Scent of Summer Dusk

I really shouldn’t be blogging tonight. I’m lucky enough to have a bit of work to do, work that I might actually get paid for. But I can’t concentrate.

I don’t know whether it’s because I’m ‘overdoing it’ as my two friends and husband protest that I am, or whether it’s this lovely weather distracting me and giving me an intense dislike for my desk at the moment. It’s been gorgeous these last few days, and my mantra is to make the most of life before it disappears through your fingers as fast as dry grains of sand. So I’ve been in the park, going for walks and trying to clear my head. And then I sit at my desk, and nothing happens.

Just half an hour ago, I took a break from my desk to bring out the bins, and as I stood there absorbing the fresh air and fanning away the midges, the smell of the warm air brought back memories: memories of having barbecues growing up that lasted until it got dark; memories of walking to the shop with a single pound coin in my pocket to buy sweets for all four of us; memories of having cycling competitions with my two younger sisters (in my younger, fitter days) around our estate, only coming back in when the other kids were called home too.

I really hope that one day, Ali will enjoy this freedom, but right now I don’t think she’ll ever be as free as we were. The dangers that were there when we were kids are still there now, and coupled with social media (I get the irony, believe me), you really can’t tell who is watching your kids and what images they have of them. Ali is only five and I’ve already taught her my address and phone number in case we ever get separated for whatever reason. We’ve done stranger danger, although how much of it she really understands I don’t know, and I worry irrationally all the time. This is normal, right?

I remember after the terrorist attack in Paris in 2015, I didn’t sleep for about two weeks. I got paranoid about every little noise in the night, about being in crowded spaces, about helicopters and planes overhead. And I’m not sure why it worried me so much, because I remember going to Coalisland (In Co. Tyrone, Northern Ireland) every weekend with my parents as a child and being stopped by soldiers at the border. Both of my parents worried about their Southern Reg car – it was dangerous at the time and it certainly made you stand out as an outsider and in the wrong area, a prime target for petrol bombs. As kids we were terrified, but mum and dad seemed to take it in their stride. They were used to it, it didn’t faze them. And if it did, they never let it show.

What  were they supposed to do, never go north? Or move back up and never go south? They did neither. We continue to travel back and forth to see our family, and will always do so, even if Brexit does mean tighter borders between the UK and Ireland (and after the attack at the Ariana Grande concert in Manchester this week, it’s looking like a possibility).

Our world is not safe, yet it has been reported that never before in history has it been safer to be alive. Polio, the plague and other diseases are almost entirely eradicated. Vaccinations against deadly diseases such as measles and malaria are widely available. Life expectancy is now into the seventies at least. And we will be spending the rest of our lives worrying about terrorism, bogeymen, rapists and the likes.

Listen, I’m not suggesting for one second that we should let our guard down and ignore what’s going on in the world. Nor am I saying ‘oh well, the world is an evil place, sure what can we do?’ Of course we must be seen to be strong in the face of barbarity. But our children deserve to live free of fear, because they are going to spend enough time worrying about things. Our children deserve to live, and to try and carve out a legacy to leave behind them for their own kids. They deserve the freedom to make their own mistakes and the freedom to recover from them.

They should be free to ride their bikes into the sunset, embracing the sweet smelling fragrance of a summer dusk.

RIP to those who were killed in Manchester 22.5.17, and condolences to your families.

Enda the Line

 

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?

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.’

How Many More Graces?

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.

I hate to be a burden, but…

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.