Category Archives: deinstitutionalisation

Tuesday Thoughts – Budget 2025: A Reflection

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October is a reflective time for me. It’s bookended by my father-in-law’s anniversary on the first day of the month, and my granny Maye’s anniversary on Halloween night. Sandwiched in between is Martin Naughton’s anniversary. Regular readers of this blog should be familiar with Martin by now; he is considered the Father of the Independent Living Movement in Ireland. Next Monday, 13 October will mark his ninth year “away from home”, and he is still sorely missed, both in the capacity of being the forefront figure of the movement, and as a comrade and friend.

Martin came to mind this morning as I read the paper this morning on Budget Day. I have vague memories from my youthful twenties of Budget Day being an event that people got excited about. Now, it’s a day filled with dread, the ghosts of the 2008 recession continuing to haunt us. In 2012, then Health Minister James Reilly announced a sweeping cut in funds of €10m to the Personal Assistant Service. It was salvaged by the actions of a group called the Leaders Alliance, headed by Eugene Callan and included many disabled activists, too many of whom have also since passed away, who slept outside the Dail for three nights in protest. Leigh Gath told the media: “We’re often seen as the most vulnerable targets, but after today and however much longer we have to stay here, maybe that will change.”

Irish disability history was made that on 5 September 2012, when the government announced that they were rowing back on the inhumane and savage cuts, but the threat still lingers over disability services, Personal Assistance in particular. 

Back in 2025, I read in the Irish Independent this morning that “disability services will be a central part of the budget.” It goes on to state that “this will be used for more staff, more residential places, more adult day places and make some contribution towards assessment of needs.” This is great news for many families who are under strain, but I’m sceptical as to whether there’s any great demand for adult day places or residential places among disabled people themselves.

I accept that there are some disabled people who enjoy the camaraderie of attending day services, who love meeting their peers and who love going on day trips to places away from their families. I appreciate that for many accessing respite services that it allows them a level of freedom that they may not enjoy at home. However, it is crucial that disabled people themselves are holding the reigns of control over their own lives, that they themselves are demanding and designing the services that will enable them to get the most from their lives.

In my experience, and from talking to other people, the Personal Assistant Service is the one service that offers personal freedom and choice. It allows people to study, work, and to participate in society as contributors and consumers.  In its purest form, it lends people more choice and control over their own lives – to do whatever the hell they want, whenever they want. Honestly, it’s been over ten years since I felt this way about my Personal Assistant Service, and I know I’m not alone in this.

Since the cutbacks were supposedly reversed in 2012 – nearly thirteen years ago – advocates for independent living and disability (human) rights have had the frustrating job of having to educate the government, service providers and disabled persons themselves about the philosophy of independent living and the importance of adopting a human rights approach. That means enjoying a standard of life that our non-disabled peers might take for granted: living in our own homes, perhaps with a partner or a family; engaging in meaningful employment or educational opportunities; availing of social outlets or even going travelling. It seems that every time disabled people win the right to do these things, another cutback or legislative loophole pulls the rug from under our feet.

Luckily, however, we are, in theory, in a better position to push for an acceptable standard of living than we were in September 2012. The UN Convention on the Rights of People with Disabilities (UNCRPD) was ratified in 2018, and the monitoring/advisory body was established by the Irish Human Rights and Equality Commission (IHREC) by the end of that year. Around the same time, Independent Living Movement Ireland (ILMI) launched its #PASNow campaign, urging county councils to vote in favour of legislating the Personal Assistant Service, thus enshrining the right to Independent Living in Irish Law. Most recently, the publication of the National Human Rights Strategy for Disabled People 2025-2030 marks a vital shift in the State’s obligation to treat the barriers to inclusion that disabled people face as serious violations of their human rights.

Legislating for Personal Assistance Services in Ireland is a matter of urgency. Currently, PA hours are distributed, primarily by the HSE, in accordance with perceived need. It is not enough for anyone to be assisted out of bed, often at a time that does not suit the individual, and to be put back into bed at the end of a day. Humans need to feel a sense of purpose, a desire to fulfil their potential, and disabled people are no different. When a disabled person is denied access to the services they want as well as need (because, to paraphrase the great Martin Naughton, we should be able to do what we want as well as what we need),that person is at risk of isolation, of developing mental health problems, of never truly being recognised as an equal in Irish society.

Des Kenny said in Conversations about Activism and Change that while changes for the better are happening, overall, our progression towards equality is painfully slow. I know we have to look at the bigger picture, but I cannot help but feel frustrated that many who have fought battles in the name of achieving equity for disabled people have since passed, far too soon. The National Human Rights Strategy was a monumental achievement for disabled people. Now, our government much work to ensure that the strategy is implemented in our everyday lives. We are worth the investment, in every sense of the word.

As I said, October is a reflective time for me. I’ve now been blogging about disability rights for over eleven years. Am I still going to be writing the same things in another ten years’ time? God, I really hope not.

Tuesday Thoughts: A Reflection of “In Their Names In Our Time” Eight Years On

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The date 23rd September 2017 will always be etched in my memory as the day that disabled people in Ireland came together to push back against the injustice that we’d collectively endured as a collective since the onset of the recession. On that chilly September day, over two hundred people came together in the Mansion House, a year after the centenary marking the Easter Rising in 1916, to celebrate the lives of seven late disability activists who had made notable contributions to the advancement of Independent Living and equal rights for disabled people in Ireland. Their names were Martin Naughton, Joe T. Mooney, Ursula Hegarty, Florence Dougall, Michael Corbett, Dermot Walsh and Donal Toolan. Although these people were singled out, there were many activists from across the country whose contributions were recognised in conversations held between attendees on the day; far too many to list here.

When Martin died on 13th October 2016, a collective of disabled people came together to create a space to celebrate his work and legacy. What became obvious in the planning process of the event was that we needed to reinvigorate people and the Independent Living Movement as a whole. In the barren landscape of post-recession Ireland, where vital services had been attacked and whittled down to almost nothing by the very people who promised to protect them, disabled people were hungry for change, and were adamant that they had a duty to honour these seven activists’ legacy by fighting for it.

On 23rd October 2016, as I sat in Carmichael House, where the first Center for Independent Living had been established twenty-four years beforehand, I pondered on how I could contribute to the continuation of this important disability movement. It had been a year since I’d last been employed by Offaly Centre for Independent Living, and I’d departed from the job with a sparse skill set; apart from a successful Fashion show which sported the diversity within our local community, I’d only ever organised a smattering of coffee mornings and movie afternoons. I wanted to be a writer, and so I volunteered to establish a blog to collect memories and stories about the early days of the movement. Doing so gave me the confidence to help with the admin of the event. For the first time in a long time, I felt valued and useful, and it was an amazing feeling.

I was invested in this project. My peers were trusting me and were generous with their advice. I started talking to and texting people I’d never spoken to before, especially John Doyle and Shelly Gaynor. John fed me titbits of Independent Living history, things I didn’t know before, because there was no record of an Irish disability movement. Shelly was a grounding force. She was the voice of reason and could easily distinguish between the achievable and the impossible. And Eileen Daly became a firm friend, trying to arrange meetings to accommodate my participation. Ultimately, however, I ended up recruiting a babysitter for Alison as the organisation of the event became like a full-time job.

There was a lot of talk around the event, positive and negative. Mistakes were made, many of which I’d take back in a heartbeat, and certainly would not repeat. Organising an event of this magnitude was a giant learning curve. That’s the essence of Independent Living, and learned from each other. Alliances and lasting friendships were formed. Ultimately, disabled activists from across the country rowed in behind us, knowing that although the process wasn’t perfect, we were trying our best. We were reluctant to make promises about how the event would go. I felt we were under an enormous amount of pressure. Everyone was looking for the same thing: a feeling of solidarity and camaraderie; yet each of us were also bring personal hopes and expectations to the table.

Finally, the day itself came. I remember waking up with a pain in my stomach. I remember doing my best to greet everyone I knew and introduce myself to anyone I didn’t. As a writer, I’m used to working alone, but meeting two hundred people in one day was another level of overwhelm. In an act of bravery or stupidity, I’d offered to write and perform a monologue highlighting the dangers of internalised oppression; we cannot allow our own self-limiting beliefs to hold us back. I’d never performed on stage before, and the subject of the monologue I’d written with Peter Kearns – a disabled mother led to believe that she was incapable of caring for her own baby – was still painful and raw, five years later.  Thankfully, my acting debut was well-received, though minutes later, Peter Kearns found me puking in the toilets. (“Does it get easier?” I asked him. “God, no,” he laughed as he beheld my ashen face.)

The event was picked up by RTE News, which was great publicity, but the purpose of the event was more nuanced than was reported. We came together as a collective to mourn and remember, but also to regroup. We needed that event to remind ourselves of our own strengths. That we did not deserve the inhumane treatment that was doled out to us in the name of saving government money. A reminder that no matter how much is in the government pot, we are entitled to our rights and services that enable us to be independent must be secured and underpinned by a rights-based approach.

Eight years have passed now, and changes have been made. Independent Living Movement Ireland (ILMI) is now officially recognised as a Disabled Persons’ Organisation (a DPO), representing the views of disabled people across the country. ILMI are supporting the establishment of local DPOs, encouraging people to fight for their rights and vocalise their concerns. 

In addition, ILMI is leading the way in pushing back against language that victimises or infantilises disabled people. And just last week saw the publication of the National Human Rights Strategy for Disabled People 2025-2030, a historic moment as this has been the first strategy to consult with disabled people and DPOs throughout its compilation. This gives me hope that perhaps, one day, disabled people might gather in the Mansion House to celebrate rights, freedom of choice, and being truly treated as independent citizens of Ireland, just as those gone before us fought for.

I will forever be proud of taking part in this event, and will always use it as a benchmark for what is possible, because really, anything is, when we work together.

Dear Martin Naughton…

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A letter to Martin, eight years after your passing

(written after going to see No Magic Pill in the Black Box Theatre, Galway on 9 November 2024)

Dearest Martin,

There are around six hundred thousand people with disabilities, the term you used, in Ireland. Yet, for some reason, you seem to have had the biggest impact on many of our lives, regardless of disability. You were an extraordinary man, even though, just like your peers, you were probably made to feel “less than” for not “making an effort” to walk or try to conform to mainstream society. You taught us that the discrimination we faced was not our fault, through discovering this fact yourself.

I consider myself an intelligent woman, yet until we met, I genuinely thought that it was my duty to push myself to become almost normal. I did not believe it appropriate to highlight my own weaknesses and shortcomings, for fear they would be used against me. Until I met you, I thought I was great for hiding my struggles, for beating myself into a world that I didn’t seem to fit into, for doing everything myself rather than asking for help. When we met for the first time in 2005, the first thing I saw was an older man with greying hair. What could this auld one possibly know about life, I thought. Little did I know that it was down to the actions of you and your friends that had enabled me to have the relatively sheltered mainstream life I enjoyed, and by “sheltered”, I mean I was sheltered from feeling the full effects of institutionalisation, exclusion and rejection. 

That June day, in Chief O’Neill’s in Smithfield, you shattered my world into pieces, and I found myself questioning myself and everything I’d ever been taught. Was it heroic or folly to try to hide the elements of myself that made people uncomfortable? You led me to realise that there was nothing wrong with me, and that there never had been.

I remember our first conversation. You asked me if I knew what a Leader Forum was, and I said yes. We both knew I was lying, because at the time, there was no such thing. Yet something about you told me that I had to “fake it ‘til I make it.” From that moment on, I watched as an entire movement came to you looking for answers. It seemed that you always knew what to say and do. What was that like, were you honoured or did it piss you off from time to time?

From that fateful June day, you have been in the background of everything I have done and achieved; living independently, working with Offaly Centre for Independent Living, and when I was presented with the opportunity to get married and have a child. I thought of you and how you and others had led the fight that enabled me to have these luxuries (yes, they should be rights, but I think we’d agree that we’re not quite at that point yet). You lived as you pleased; you didn’t answer to anyone, something that so many of us continue to aspire to.

Like many of us, I put you on a pedestal. I always expected you to have the answers. Did you like this, as so many people intimated, or did you feel lonely? Please know that watching you spurred myself and so many others to find our own answers. If you could do it, anyone could. I recall when I worked for you that summer of 2005, how frustrated I became with you for asking me to set up a Leader Forum, but neglecting to give me any hints as to how to do this on a practical level. Now, twenty years later, I understand why: you wanted me to find the answers myself, to take risks, to fail and learn from my mistakes. I guess I should thank you for trusting me, because since then I’ve taken plenty of risks which have led to a life that was beyond reach for many of your generation.

I remember watching the last “action” you would ever take in September 2015, and shaking my head in frustration as members of the general public asked what it was about. It made me wonder why you even bothered trying to make a difference. Then I remembered that you have seen the grey walls of an institution. You truly understand what losing freedom and liberty is like, and that’s why you dedicated your life to ensuring that it didn’t happen again.

I guess all that’s left is to thank you. Thank you for coming into my life during a formative time, when I was still ashamed of being associated with the “disability sector” in any way. Thank you for changing how I value others and myself. I’d always connected my own self-worth to the tasks I could carry out unaccompanied, buying into a widespread consumerist belief that wearing yourself out in the name of productivity was akin to a badge of honour. Thank you for teaching me that my wobbly body was not the cause of my exclusion. Thank you for granting me the permission to speak out against the systemic discrimination that we face on a daily basis.

I don’t think you truly realise the profound impact you had on people. Christian O’Reilly has made it his life’s work to capture your story, not giving up until he had captured the essence of you. I have seen “No Magic Pill” twice now, and although the actors portrayed the characters to an Oscar-winning standard, it’s the feeling that seeped through my being both times I’ve watched it. Paddy Slattery and Eric Fitzgerald portrayed you in different ways, but watching them, it was you I felt beside me, as if I was being given a second chance to say goodbye properly. That said, it might be argued that even after eight years, we are not ready to say goodbye. Between “No Magic Pill” and your autobiography which was co-written with Joanna Marsden, we can hold onto you for that little bit longer.

Most importantly, thank you for being you, without which many of us would not be enjoying true Independent Living. May we always be strong enough to protect everything you and others ever fought for.

Love Sarah xx

“No Magic Pill”: A Perfect Tribute to our friend Martin Naughton

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Screenplay/Writer: Christian O’Reilly

Producer: Raymond Keane

Performed by: Sorcha Curley, Mark Fitzgerald, Peter Kearns, Ferdia MacAonghusa, Julie Sharkey and Paddy Slattery

Dramaturg & Disability Consultant: Peter Kearns

Set Design: Ger Clancy

Lighting Design: Sarah Jane Shiels

Costume Design: Deirdre Dwyer

Music and Sound Design: Trevor Knight

Movement Director: Rachel Parry

Voice Coach: Andrea Ainsworth

It takes a special kind of person to inspire the writing of an entire play. And only an extraordinary person would have his role in the play performed by someone who knew him and held him in the highest regard. Having seen No Magic Pill in the Civic Theatre, Tallaght on 9 October last, I know that I am not alone in my gratitude for being able to witness such a fitting celebration of Martin Naughton’s life.

Writer and playwright Christian O’Reilly has always been an important ally and friend to the Independent Living Movement. From his very first encounter with Martin Naughton twenty-seven years ago, his ambition has always been to capture Martin’s story in a way that would appeal to and educate a wider mainstream audience. His critically acclaimed film, Inside I’m Dancing (known as Rory O’Shea Was Here in the US), marked his first attempt in bringing Martin’s story and, by default, disabled people and the philosophy of Independent Living into the public consciousness. It’s a film that he is rightly proud of: the story of two young men who escape the confines of institutional living and use their freedom to screw up their own lives as they see fit. I remember seeing it in the cinema myself at the age of twenty-one, when I would’ve been clubbing and partying and making mistakes. I remember how grateful I felt that Christian had taken the time to consider the realities of what it was like to be disabled in Ireland.

In recent interviews, Christian has admitted that while he was (and still is) proud of Inside I’m Dancing, it wasn’t the story that he wanted to tell. A month before Martin passed away, Christian promised his friend that he would complete a dramatic telling of Martin’s story. This promise culminated into the production of No Magic Pill, a piece of theatre that has been twenty-six years in the making – and it shows. Each line of dialogue was carefully crafted, each scene beautifully woven together with the threads of human emotion. It’s also ground-breaking insofar as all the disabled characters are portrayed by up-and-coming disabled actors, and this performance truly showcases the talent of these actors.

No Magic Pill opens poignantly with the story of a young Martin being unwillingly sent to St. Mary’s in Baldoyle “as he is not getting any better.” Nine-year-old Martin is depicted on stage as a small puppet with splints. He has no say or control over the day-to-day mundanities of life: he is literally a puppet on a string. He wants to get better; he wants to walk.  Like many young disabled people, his sense of value is equated with his physical abilities. As he gets older, however, he surprises himself: he sets up his own garage and he teaches the younger residents of St. Mary’s how to swim.

Filmmaker-turned-actor Paddy Slattery effortlessly embodies the spirit of the Martin we know and love. Slattery doesn’t just act; he pours his soul into the role. His ability to empathise with Martin’s character is very special. Outwardly, Martin is persuasive; he knows how to get what he wants. However, inside he is crumbling under the expectation that he will be some sort of saviour for his disabled peers. The ghost of Brendan is constantly haunting him, whispering to him about the new life he could have in America. It’s more accessible, there are more opportunities, he could live independently. But when the first Centre for Independent Living is funded for two years (by the EU Horizon Project), his peers realise that their independence could be whipped away in an instant.

Sorcha Curley embodies the spirit of the late Ursula Hegarty. She’s spent her life in an institution, and she’s not going back. She’s feisty, argumentative, but also afraid; this gamble that she’s taking – trying to live independently – needs to work out, or she risks spending the rest of her life in a home or, best case scenario, dependent on her partner Jimmy.  She points out that Martin will be okay, but that the rest of them need the Personal Assistant Service to continue if they are to escape a fate of institutionalisation, with no choice of when to get up or go to bed. It becomes clear that they will have to fight for their freedom, as a united collective. Martin’s decisions are suddenly universally relevant: whatever he decides to do with his own life will inevitably affect Ursula’s, Dermot’s and, it is implied, the lives of disabled people across the country. 

On stage, Paddy embodies this unfairness in a realistic and poignant way. He’s torn between his dreams of a life without inhibitions and a sense of duty to his disabled peers. To complicate matters, he’s fallen for his P.A. Josie, played beautifully by Julie Sharkey. She’s shy and lacking confidence, something Martin makes it his mission to remedy, just as the real Martin did for many of us throughout his lifetime. Josie doesn’t take any shit from Martin, and Sharkey and Slattery have an undeniable chemistry onstage that feeds seamlessly into their characters. Once again, as in Inside I’m Dancing, writer Christian explores the complexity of the PA/Leader relationship when Martin falls in love with Josie. Inappropriate as this may be, it reminds us of the importance of giving disabled people the permission to mess up and make mistakes, just like everybody else.

Unsurprisingly for those of us privileged to know him on a personal level, Peter Kearns as Dermot steals many of the laughs of the show. Because of his speech impairment, Dermot often isn’t taken seriously and his opinions are overlooked or dismissed. He relies on Martin to translate for him, a role that Martin tires of. Martin encourages him to use his PA to communicate, which lends Dermot his freedom. Peter was also the Disability Equality Dramaturg for the production, bringing his years of experience in lecturing in Disability Studies in St. Angela’s, Sligo to ensure that the entire cast had an equal and deep understanding of the history of disability and the social model.

Kearns cleverly plays on the mechanics of his own impairment when portraying Dermot.  As he pointed out during a post-show discussion, one of the benefits of using disabled actors in this production is that they are free to explore and portray their characters as only these actors can; there’s no “cripping up” which means that more attention is paid to the characters and the world they inhabit. Ferdia MacAonghusa’s physical performances, particularly where he drags himself across the stage, acts as a physical reminder to us all of the uniqueness of the crippled body.  It can also be seen as a call to action: disabled actors will no longer be silent while non-disabled actors assume our roles and sanitise the perceived “unsavoury” realities of our impairments.

No Magic Pill is so much more than a play about disability. It’s a play that explores the sacrifices required by those involved in activism. I found myself wondering: to what extent did Martin sacrifice his own happiness to secure a better quality of life for the better of the collective? Was he frightened? Lonely? Bitter? Martin was far from a saint, but he certainly was an aspirational human being who wanted to make the world more accessible for himself and his peers. Without him and the others who came together to establish the first Center for Independent Living, many of us would be living in institutions or in the back rooms of our parents’ houses.

No Magic Pill has set an exciting precedence for future productions about disabled characters in Ireland. Seeing the powerful performances by the disabled actors should lead producers and casting directors to question why, historically, disabled actors have not been encouraged to assume acting roles. As Selina Bonnie, Independent Living Movement Ireland’s Vice Chairperson commented, this production has proven that with thought, awareness training and innovative set design, barriers that often prevent disabled actors from availing of acting opportunities can be removed.

I am so grateful that Christian O’Reilly persevered in his mission to bring this heartwarming story into the public consciousness. It certainly gives me hope as a writer that one day I, too, will write a story that represents the reality of living as a disabled person. Thank you to Christian, to the producers and cast for bringing Martin’s spirit back to life. It was such a timely and fitting tribute to a remarkable man, activist and friend, whose sixth anniversary we remember on 13 October. I have no doubt that everyone involved in this unique and memorable production has made our old friend proud.

Home

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Home!

On this sweltering hot Thursday afternoon, I am sitting in a first-floor apartment, overlooking the beautiful Lloyd town park below. This isn’t where I normally live; our house is undergoing some serious renovation work. Every night, I close my eyes and ask myself if I was actually mad to such extensive work to our charming little four bed which was, on the whole, perfectly fine, in the middle of a pandemic, no less (The answer is yes, by the way). Uprooting our child, surrendering our little baby (puppy) Troy into the hands of capable dog-sitters – God, I miss him so much! Was it worth it? I ask myself. Was it…necessary?

The answer to this is also yes. 

I’ve written before briefly about the deterioration of my physical impairment. Since then, I’ve been to physiotherapy a couple of times, and it’s really helped with the pain in my right knee. I’ve also been exercising a little more. I’ve even started eating more healthily, cutting down (though not out – let’s not lose the run of ourselves here!) on sugar and chocolate – which have been staples of my diet for as long as I can remember. (I was a picky child, and my mother reasoned that eating something was better than not eating at all). All of these changes have helped. I feel a bit better, slightly more energetic and, despite the chaos that’s unfolding in my world – not to mention the world in general – I feel more grounded and able to cope with the stress of it all. 

But here’s the upshot: no matter how healthy I eat, no matter how much physio I do, my wobbly body will always be unpredictable. Twenty years ago, I could have handled those concrete stairs in this apartment block more easily: okay, I might have still had to go up on my knees and down on my bum, but it certainly wasn’t the big palaver that I find it to be now. At the moment, I only leave the apartment when it is strictly necessary, or if I am going to be out for a couple of hours (though, admittedly, this is also COVID-related). Nothing is spontaneous at the moment; a simple trip to the shop is now a case of me psyching myself up to conquer my concrete nemesis yet again.

I shouldn’t moan, however. This is only temporary. Soon I shall be returning home – to my own home. A privilege that many people in this country – including many disabled people – can only dream of. When I was twenty-three, the recession of 2008 was still a year away, and I was living in a privately rented two-storey semi-d in Portlaoise. I was managing fine until one day, while carrying some laundry upstairs, I slipped and bounced down the stairs, landing awkwardly on the concrete below. As an expert in the art of falling, I had managed to preserve my head by tucking it into my chest as I landed. That was a wake-up call for me. I would not be able to adapt to my living arrangements indefinitely, not without making some serious changes.

It’s easy for me to understand why disabled people in their twenties, thirties and even beyond are still living in the family home. Firstly, accessibility is a major factor, not to mention a serious lack of rental properties at the moment. Then, if you are lucky enough to find somewhere semi-suitable, the cost of rent can reach over a thousand euro a month, and many landlords refuse to consider tenants on rent allowance or other benefits. Also, many landlords will not allow you to make necessary adaptations to their property, even simple ones such as installing grab rails in the shower. And sure, you can apply for a council house, but the process is a full-time job while you chase (often beg) your local councillors to advocate on your behalf. 

So what? I hear you ask. You may point out that there are many non-disabled people, particularly in the 20-40 age group bracket, in the same position. People with good jobs and incomes, who just can’t seem to get on the property ladder, or to find rental accommodation. 

For these younger disabled people, who still live at home but yearn to move out, there are even more complex issues coming down the line. Many disabled people are considered ineligible for Personal Assistance or Home Help services, either because they have a family member to care for them, or because said family member is claiming Carer’s Allowance for them. In some cases, family members find it difficult, for various reasons, to allow the disabled person to become independent. Often, not enough hours are offered to enable a disabled person to enjoy a decent quality of life, meaning that the person would not have adequate supports to live independently of their family (In 2017, a study revealed that almost half of disabled people who receive PA services are allocated the equivalent of forty-two minutes a day). Anecdotally, it is quite difficult for someone who is be considered “high dependency” to secure the level of assistance they need, especially at times that really suit them. Unless you have a telly in the bedroom, a good old-fashioned midnight Netflix binge is out of the question, and I have heard too many stories of people being put to bed at half eight at night.

The solution to enabling disabled people to live independently must be as multifaceted as the issue itself. Even if local councils provide more accessible housing, the only way disabled people are going to truly enjoy a rich and full life is if Ireland adopts a “rights-based” approach. This means having the opportunity to engage in meaningful and lucrative employment opportunities, for example – the pandemic has demonstrated that it’s possible for those employed in a wide variety of professions to work from home if necessary. It also means granting wider access to user-led services including Personal Assistance. This means having access to support how and whenever the disabled person chooses. However, until Personal Assistance is recognised as a right, true independent living remains a pipe dream.

As for me, I can’t wait to go back to my new, accessible home. I know that I am very lucky. But having a suitable roof over your head should not be a privilege. It must be recognised as a basic human right, for every one of us.

Institutionalised

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I am eight years old. My parents are in the front of the car, I’m in the back. I’m the only one of my siblings who is being spoiled with one of these many trips to Dublin. They want to look at me again, to bend my legs back and forth, to mock me by “testing” the strength in my arms. At least it’s a day off school, I suppose, a day free from being reminded that unlike my classmates, I can’t knit. I can’t run. I am not like the others. The others don’t make these trips to Dublin.

I am outside a brown building. Coming out of the automatic doors is a little boy, around my age. He is wearing exaggerated metal splints around his stick-thin legs and walking like a tin man. He stands out, he’s too obvious; he might as well be wearing a bell and shouting “leprosy!” I’ve been threatened with these splints a number of times. A punishment for my legs, for not cooperating. Inside, I am stripped down, exposed. The experts stick markers to my legs and calls them diamonds. Then I walk and walk and walk. I am tired, but I am told to keep going. Push that body. Don’t let it defeat you.

Now I’m ten. We’re staying with my aunt in Belfast. Well, mum and I are staying here. We’ve been coming up and down for weeks, going to the Musgrave Park Hospital. I wear the special markers again and the computer shows the doctors how my muscles move. I walk up and down and up and down. The doctors tell me I am a supermodel, and it must be true, because only supermodels could have their bodies scrutinised and discussed at every angle. They’re recommending botox to loosen my muscles, so I can walk better. Mum tries to make a joke of it, saying that she would love botox. Perhaps, after all this time, this botox will make my life better. Yes, this is the miracle cure I’ve been waiting on since forever. After waiting in a hospital bed for what feels like days, they give me the injection to the back of my right calf, and I am disappointed. Surely to be made normal, I must be ripped apart and sewn back at the seams?

I’m fourteen. To appease my mother I’ve gone into respite, knowing that in spite of her insistence, I won’t enjoy it one bit. I wake up on the first morning to find a nurse, evidently bored on the night shift, unpacking my things. I’m angry, yet I don’t interrupt. There’s no point: she won’t understand my anger. Instead I lie there, silently watching her as she judges my clothes, raises her eyebrows at the sweets my mum packed me. She checks every corner of my suitcase. I feel invaded, but I’m not sure if I am justified in this. Maybe this is just something we disabled people have to put up with. I don’t like it one bit.

Transition Year and one month off my seventeenth birthday. I’ve written a play, and the year head has agreed to allow the drama teacher and I to produce and direct it. This is the beginning of a blossoming writing career. I have so much to do, but I am not in school. Instead I am in Dun Laoghaire, the NRH to be exact.  I am to get two weeks’ intensive physio-, speech- and occupational therapy. Have I any idea how lucky I am? I’m only in TY, I’m told. I won’t miss much. I am put on the children’s ward. The girl in the bed next to me is called Stephanie. She becomes breathless when she tries to talk, but she is sweet. She’s also frighteningly institutionalised. She is my age and has been here a few months, but has already forgotten what life outside is like. The happiest part of her week is when one of the nurses does her nails. Life here is regimented. On the first day I wake up looking for a shower, and I’m told that showers are not an everyday thing. Instead I am presented with a basin of soapy water and told to wash myself. On my days to shower, despite my insistence that I can manage, I am told that it is unsafe for me to shower alone. I have to tolerate a stranger touching me, seeing my bits and pieces (“nothing we haven’t seen before” they say cheerily)  as I am scrubbed much like a horse might be. The nurses laugh at my embarrassment. Typical teenager. But I am not a typical teenager. If that were true, I would be in my home economics class, not here. We go to bed with a video at half eight. I haven’t gone to bed this early since I was eleven. It’s not really an opportunity to rest, either: people need to be turned and toileted during the night, sometimes people cry out for assistance. I am only here for two weeks, but the memory of it will last a lifetime. They prescribe lots of physio. Even now, at thirty-five, I still do it. It’s good for me.

I’m still in Transition Year, back in the safety of my own routine in Tullamore. I’ve done work experience in the Tullamore Tribune, and my play is about to go live to an audience of four hundred people over two nights. It feels surreal; it’s what I’ve always wanted, and yet I feel like I’m on the outside looking in. I also feel exposed, as these characters are based on real-life people that I know and love. I also feel immensely proud and validated that my teachers trusted me with the task of writing and producing this play. In a parallel universe, we have to visit the National Learning Network as part of the “Community Care” module.  It’s an alternative to college for disabled people, people like me. As I sit listening I recognise its merits, but I also find myself wondering whether there is more to life. Will I end up in a day care centre in my twenties, drinking tea and making idle chit-chat about the weather? The prospect terrifies me, though I don’t know why. In many ways it may be easier than the mainstream route, but I am stubborn. Too stubborn sometimes.

So I enter fifth year, still terrified. I am just another number, I tell myself. Nothing special about me. I’ve convinced myself that the only way to avoid that day care centre is to study. I resolve to get enough points to get into Trinity, although I have no idea what I’m going to do after I get my degree. I become fixated with this aim; it’s the only thing that keeps me going.  My life revolves around school. I stop eating, watching with satisfaction as my belly shrinks into nothing. I am normal, I tell myself. I don’t stop studying until after midnight every night. I silently cry my way through lessons, despising my own weakness. I am lonely, but I don’t have time to go out gallivanting at weekends. I have no choice. I must do this. The Leaving Cert nearly breaks me, but I conquer it. Great triumph over adversity story. I am going to Trinity.

Trinity is a different world. I am equal here. With the right supports in place, I blend into the background, silently struggling with imposter syndrome. I can’t compete with these genii who claim to have been reading Jane Austen since they were five. I struggle in silence. I got a scholarship to go here. If I ask for help, people might think that I’m a dumbass and kick me out. I’ve resolved to leave when I am compelled to confide everything in Orlaith and Declan, the disability officers. They tell me not to leave. They also confirm something that I have suspected my entire life: that there is nothing wrong with me and that we need to use our inner fire to eliminate barriers for disabled people. I shamefully tell them I broke my electric wheelchair by bringing it across Front Square, but they don’t berate me (much!!). Instead they insist that the solution is to build a level-access pathway across the cobbles. I start to think that if an institution as old and as steeped in history as Trinity College is can make such dramatic changes, then there is no excuse for the rest of the world not to make these changes too.

During my time at Trinity, I learn so much more than how to write a critical essay. I learn how to be independent, how to cook, how to work and pay my bills. Every morning I wake up, and know that I have choices. I don’t always make the right ones, and having that freedom to fail and learn from those mistakes is vital. For example, one month I spend my rent money on God knows what and have to spend the next few months eating cereal. A hard but important lesson! I leave Trinity with the second class honour that was so important to me, though now I can’t remember why. I don’t even have the Latin parchment on display, I think it’s in my attic somewhere. After I leave college, I have no idea what I’m going to do. I feel like I’m leaving part of myself on campus, but with the grey buildings and the beautiful campanile and the leafy trees and students in their dufflecoats, I forget I’m not in the real world. The real world is cruel and it reminds me of my place: outside it. I apply for hundreds of jobs, but I do not get called for a single interview. What was I thinking, I berate myself, nobody would want a useless cripple.

Eventually, I am thrown a lifeline and Offaly Centre for Independent Living offers me a job. Mum tells me she was happier when I got offered a six-month internship with HP, an experience which would’ve cost me more money than it was worth. But I am delighted, and I still look back on my time there with fondness. My job is ridiculously easy. It is the emotional toll that is harder. I learn all about independent living and equal rights only to discover that these are only theories and that in reality Independent living cannot be achieved. I witness people becoming afraid to ask for what they wanted as the focus shifts to what people need at a basic level. There’s no money, we are constantly told at staff meetings.  We need to prioritise services, get people out of bed. Nothing we can do about it, we are told. Things are tight at the moment. I am an upstart, a troublemaker. I am not cooperating. I find myself trapped in an institution of my own, the dark depths of my own mind. I think back to my own respite stays of my childhood and feel physically sick at the thought of them being a long term arrangement, for me or for anyone.

It bothers me, even now in my position of privilege – I live independently, in my own home, with my husband, daughter and naughty little puppy – that there are people out there who are incarcerated by circumstances not of their own making. Many are living in hospitals either because their own houses are not wheelchair accessible, or because there are not enough ‘community supports’ like home helps and Personal Assistants, and it annoys me. It annoys me because I know that I am lucky. It annoys me because I constantly feel that I have dodged a bullet. It bothers me to hear about disabled people who are ready and willing to contribute to our economy being stuck at home because only their personal care needs are being met. It infuriates me sometimes that I was naively led to believe that disabled people could ever be viewed as equal when the story on the ground, as well as the lived reality, seems to be disturbingly different.

Sometimes, I wish I didn’t care. That I could get on with my life and writing and ignore the many rights that are being denied to disabled people at the moment. I’m not trying to make myself out to be a martyr, I promise. All I’m saying is why must there always be barriers to break through, obstacles to overcome? Why do I say the same thing over and over again to the point where I’m nearly boring myself?

Because, dear reader, I know what the alternatives are. And I never want to become institutionalised, in body or mind. I reserve the right to live a life of my own choosing, and I’m lucky to be free to exercise that right.

I am getting older now. My body – my fabulously unpredictable body – is letting me down in ways it never did before. It is scary, and I know that it is partly my own fault. But this is my vessel. It will never be perfect, it cannot be fixed, and nor would I ever want it to be. This was the way I was made – not worse or better, just me – and after all these years, believing that makes me stronger than any physio regime ever could.

Academic Essay: Discuss the challenges facing the Independent Living Movement since the onset of the recession

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I am sharing this essay to outline why I am so vehemently supporting the #PASNOW campaign.

 

Discuss the challenges to the realisation of the Independent Living Philosophy in Ireland since the onset of the economic recession.

 

The philosophy of Independent Living was intended to be the cornerstone of the provision of Personal Assistance Services in Ireland. In its truest form, as noted by Morris (1993), independent living is about recognising that each individual has something to offer and that disabled people have “the right to assert control over their lives” (p21). The philosophy is entrenched in the belief that disabled people should have the same quality of life as their non-disabled peers. Yet, there have always been challenges to the realisation of this philosophy in Ireland, and these have become more apparent since the onset of the economic recession in 2008. Berghs (2014, p272) notes that “in a time of austerity, where government budgets are being cut […] independent living or care in a community cannot be ensured”. Independent Living has enriched the lives of many disabled people in Ireland. Yet its philosophy remains at odds with Irish culture, which has historically favoured a charitable approach to funding disability services. In addition, the Personal Assistance service, considered to be the cornerstone of the philosophy, was almost eradicated in September 2012 and the right to access a Personal Assistant remains unprotected by Irish law. A study conducted by the European Network of Independent Living (ENIL) in 2019 indicated that Irish Personal Assistance Services are not perceived to be underpinned by the independent living philosophy (Mladenov, Pokern & Bulic-Cojocariu, 2019, p13). Additionally, many disabled people are incarcerated in hospitals and institutions in direct violation of their human rights. Of further concern to true “Leaders” or Personal Assistant Service users is the expectation that Leaders should rely on family members for their needs and the consequent strain this can cause to family relationships. In this essay, the ideals of the independent living philosophy will be weighed up against the current reality in Ireland, and it will be demonstrated that Irish culture and the independent living philosophy has always been, and remains, at odds with each other.

 

Firstly, in examining the challenges in meeting the ideals of the philosophy of independent living, it is important to outline what this philosophy entails. According to Bruce (1999), independent living shifts the perception of the disabled person from being an object of care “to a point where they acquire rights of full participation and equality” (p5). In addition, as Morris (1993) notes, the independent living philosophy involves “acquiring the skills and support necessary for severely impaired people to have freedom to live where and how we choose with full control over our lives” (p20). Traditionally, the Personal Assistant Service has been used as a tool by disabled people in achieving independent living. Personal Assistance dates back to 1970s America, when Ed Roberts and a group of disabled college students, collectively known as “the Rolling Quads” employed Personal Assistants which enabled them to attend university and subsequently gain employment. This led to the establishment of the Center for Independent Living in Berkeley in 1972.

 

 

It took twenty years for the philosophy of independent living to travel to Ireland. The European Network of Independent Living (ENIL) confirms that the establishment of the first Irish Center for Independent Living was instigated by disabled people themselves (Mladenov, Pokern & Bulic-Cojocariu, 2019, p13). Martin Naughton, who had spent his childhood in St. Mary’s in Baldoyle, came across the Center for Independent Living when he was travelling in the US during the nineteen-eighties. In an interview with Joanna Marsden, Naughton recalled his time in America and how he saw the potential to bring the philosophy to Ireland:

I began to think of all the people back home, many of whom I had semi-reared in some sense when I was in Baldoyle, who were living in institutions. The temptation to do something became too great and I felt the pull back home. (Marsden, 2010; cited in Conroy, 2018, p227)

The establishment of the Personal Assistant Service in Ireland was also the result of the retaliation of disabled people who were tired of having no control over their own lives. Naughton stated in an Irish Times interview in 2015 that in Ireland, a disabled person had traditionally been perceived as “someone to be cared for rather than cared about” (www.irishtimes.com). Conroy notes that one of the main reasons for the formation of the Irish Independent living movement was a reluctance on the part of disabled people at the time to continue living with resentful family members or in residential institutions. (Conroy, 2018, p229).

 

However, translating the philosophy of independent living into an Irish context has always proved challenging, especially within a predominantly Catholic culture that perceives disabled people as objects of charity instead of equal citizens deserving of rights (Toolan, 2003, p175).  A study entitled Extending the Boundaries was carried out in 2006 to examine the progress of the Independent Living Movement from its introduction to Ireland in the early ‘nineties. Dixon commented that:

While the experience of Independent Living has been broadly accepted as a positive one for disabled people, there is a concern over the uneven spread of this service provision, and a worry that the philosophy of Independent Living, which should underpin service provision, is being diluted. (Dixon, 2006, p17)

 

This quote suggests that there were challenges to realising the Independent Living Philosophy prior to the onset of economic recession. However, the philosophy has become further diluted since the publication of Extending the Boundaries. Given Ireland’s tendency to treat disabled people as “victims” deserving of charity rather than autonomous individuals in their own right, fundraising initiatives has always been the norm in many disability organisations, including RehabCare and the Irish Wheelchair Association. Toolan notes that “At the same time as disabled rights groups are looking for the enactment of disability rights legislation, charities under a ‘not for profit’ banner are projecting demeaning and dehumanising messaging in order to attract resources for their service” (Toolan, 2003, p174).  This conflict between the need for the Center for Independent Living to portray itself as a rights-based organisation and the requirement to secure funding for services came to the fore during recessionary times, with Irish disabled activists reluctant to portray themselves as vulnerable in order to secure funding. However the RehabCare and Central Remedial Clinic scandals, which revealed that charitable donations were being used to inflate salaries, is one reason why sustaining a charitable approach will not work into the future. Morris (1993, p7) states that the supposed dependency and inadequacy of disabled people is perpetuated through the inappropriate application of medical expertise and the growth of the charity sector, and the way disabled people are perceived within the charity model.

 

 

Indeed, the medical model, coupled with the charity model, has had a negative influence on the strength of the Independent Living philosophy. Since the onset of the recession, disabled people have been forced to portray themselves as dependent, passive recipients of services rather than equal citizens who can live independently with the help of a Personal Assistance service. This is at odds with the Center for Independent Living’s “rights not charity” mantra. Toolan (2003) notes that being drenched in the doctrine of Catholicism, Ireland has always leaned heavily on the charitable approach, being “a society that is far from comfortable with individual rights” (p175). This can be seen in the current provision of the Personal Assistance Service. Personal Assistance was initially introduced as a pilot project in 1992, funding for which came from the EU Horizon programme. Following the two-year pilot, the regional Health Boards (now the HSE) and FAS continued to fund Personal Assistance, but in technical terms, Personal Assistance still holds “pilot project” status, and seems to be allocated on an “ad hoc” basis, with the number of hours given to Leaders dependent on which CHO (Community Health Organisation) covers that Leader’s service. Contrary to what the philosophy of Independent Living advocates, a Leader does not have full control over the hiring and firing of their Personal Assistants (Mladenov, Pokern & Bulic-Cojocariu, 2019, p21). In addition, Leaders lack control over who works for them, and at what time, meaning that assistance hours provided are uncompromisingly rigid (ibid, p20). Presently, access to a Personal Assistant is dependent on an assessment which is usually carried out by a Public Health Nurse, which focuses on basic activities of Independent Living, such as washing, dressing and feeding. This medicalised approach goes against the social model on which the Independent Living Philosophy is based and, as noted by ENIL (Mladenov, Pokern & Bulic-Cojocariu, 2019, p25) personal assistants are not trained in the independent living philosophy. In addition, access to Personal Assistance is not treated as a human right (ibid, p13). Since the onset on the recession, tasks such as personal care have been prioritised over the need for help with household tasks, accessing employment and education, socialising and shopping. Jolly (2010) notes that attempts to control expenditure on Personal Assistance occurs when a government restricts “the tasks that a personal assistant can do, meaning the tasks that [the HSE or FAS] will pay for a personal assistant to do” (p7). This rationing of Personal Assistance is at odds with the aims of the Center for Independent Living, as noted by Bruce (2000): “From the outset CIL located its activities in the context of seeing disability as a rights and investment issue to enable disabled people to have the same opportunities as their non-disabled peers” (p11, emphasis mine).

 

During the recession, the right to Personal Assistant Services was constantly threatened by the government, and indeed the service continues to face the threat of cutbacks (Mladenov, Pokern & Bulic-Cojocariu, 2019, p14). In September 2012, the Minister for Health, James Reilly announced that twelve million euro would be cut from the Personal Assistance budget, showing government’s lack of understanding of the true value of the service. The decision was only reversed following a three-day protest by disability activists, calling themselves the “Leader’s Alliance”, outside the Dail. This radical action was necessary as the right to Personal Assistance currently has no basis in Irish law.

 

In reality, the fact that provision for Personal Assistance is not yet legislated for in Ireland means that the service remains vulnerable to cutbacks at any given time, at the discretion of the Irish government. In 2013, the Center for Independent Living Carmichael House (renamed Independent Living Movement Ireland in September 2018) proposed to legislate for Personal Assistance. On 7 May 2014, a motion was debated and passed by the Seanad to allow for the legislation of Personal Assistance (Independent Living Movement Ireland, 2017). The motion noted that this legislation would build on the Value for Money and Policy Review of the Disability Services, the National Disability Strategy and the Action Plan for Jobs 2014. The proposal for the legislation stated that

the purpose of Personal Assistance is to ensure that people with disabilities enjoy the same opportunities as all members of society, to ensure that they have the same choices as others, and to afford them the means to control how they wish to pursue their lives. (ILMI, 2017, p31)

Under the proposed legislation, it was suggested that Personal Assistance hours would be granted “without regard to any upper limit on the number of hours and without regard to the cost of the service or the means of the individual” (ILMI, 2017, p33). However, the proposal also advised that the Department of Social Protection should take charge of the funding allocation for Personal Assistant Services, raising concerns that the service may be means tested in the future, potentially leaving Leaders “worse off” in terms of the level of service they would receive (ibid, p13).

 

However, for reasons unknown to this author, the Personal Assistance Bill was never enacted by the Oireachtas. Passing this law would enable Ireland to uphold its obligations in the eyes of the United Nations. According to Article 19 of the United Nations Convention on the Rights of People With Disabilities (UNCRPD), “Persons with disabilities [should] 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” (UN, 2006, p14). Although Ireland was one of the first countries to sign up for the UNCRPD in 2007, it was the last country in the European Union to ratify it on 7 March 2018, after an eleven year wait. In response, Independent Living Movement Ireland initiated a #PASNow campaign towards the end of 2018. It involves encouraging individual Leaders to contact their local politicians and educate them about the importance of the Personal Assistance Service. In addition to encouraging the legislation of the service, the campaign also calls for a rights-based definition of a Personal Assistant, as well as outlining what distinguishes Personal Assistance from home help (Independent Living Movement Ireland, 2018). The #PASNow campaign evolved following research which found that a mere 2,200 disabled people in Ireland received a Personal Assistant service in 2017 (Conroy, 2018, p232). In addition, Conroy notes that almost forty-five percent of Leaders receive a mere forty-five minutes of Personal Assistance a day, which illustrates how narrow and medicalised the criteria for receiving a Personal Assistant has become. Given that a Personal Assistant has been described by many Leaders as “my arms and my legs”, Conroy notes that forty-five minutes is not enough time to allow a disabled person to live a complete life (Conroy, 2018, p231). Clearly, the fact that such a high percentage of Leaders have access to such little service demonstrates that Ireland does not yet perceive Independent Living to be a human rights issue.

 

In fact, Ireland remains far from recognising the rights of disabled people to live in their own communities, and this is evident from the high numbers living in residential institutions. Inclusion Ireland estimated that as of 2016, just over three thousand disabled people in Ireland were living in residential or congregated settings (www.inclusionireland.ie, Accessed 19 March 2019). Article 19 of the UNCRPD (UN, 2006) states: “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”. However, for many disabled people in Ireland, this is not yet a reality. The HSE report Time to Move on from Congregated Settings: A Strategy for Community Inclusion notes that between 1999 and 2008, more people moved into residential settings (693) than moved out of them into the mainstream community (619) (HSE, 2011, p3). It is evident that there needs to be more investment into Personal Assistance to allow people to move out of residential settings. Conroy (2018) states that Ireland is currently spending three times as much money on institutional and nursing home care than on “home care” (not necessarily Personal Assistance, as in its truest form, Leaders employ and direct their own Personal Assistants) (Conroy, 2018, p235). In 2015, Martin Naughton organised a three-day protest outside the Dáil following an announcement by Taoiseach Enda Kenny that four hundred and fifty million euro was to be invested into institutional living arrangements for disabled people. In his explanation about why the protest was organised, Naughton said

 

If the Government continues to go down the route of refurbishing and building home   care and residential settings, as they have announced, they will have to put people into those homes. We need to get away from this model of incarceration. (Flaherty, Irish Times, 2015)

 

 

It has been noted that Ireland finds it difficult to embrace independent living provisions, preferring instead to rely on outdated solutions such as residential institutions (Mladenov, Pokern & Bulic-Cojocariu, 2019, p18). However, the challenge in convincing governments to invest in Personal Assistance is not exclusively an Irish one. Speaking at the European Day Conference for People with Disabilities in 2011, UK activist John Evans feared that a potential effect of a lack of Personal Assistance was that it could once again give rise to a culture of institutionalisation (Evans, 2011). In an attempt to highlight this issue, disabled people across Europe partake in a biannual “Freedom Drive”, an initiative which was the brainchild of the late Martin Naughton, and began in 2003. The activists typically present their “demands” to the European Parliament, most notably the demand to close residential institutions and to legislate for access to Personal Assistance. Besides being in violation of Article 19 of the UNCRPD, Conroy (2018, p233-4) notes that the four main characteristics of living in an institution (“depersonalisation, rigidity of routine, block treatment and social distance”) are at odds with the philosophy of independent Living. In addition, being “warehoused” in an institution is often associated with a reduced quality of life as Maggie Hynes, a disabled British activist noted: “Institutions were places where people like me died in” (Hynes, 1983; cited in Morris, 1993, p22).

 

One example of the inappropriate use of institutionalisation in Ireland was the case of Julia Thurmann, whose case has garnered much media attention since 2014. Thurmann, who was hospitalised after contracting the ADEM virus, is now paralysed from the waist down, but is still able to work and would be able to live fully independently had she accessible housing and a Personal Assistance service. However, due to the fact she could not move back to her inaccessible flat on her discharge from Dun Laoghaire Rehabilitation Hospital, she has spent the last ten years living in a nursing home in north County Dublin. It was reported in the Dublin Gazette that Thurmann spends four hundred euro a month on taxis in an attempt to ensure that she is not isolated from her mainstream community (Pownall, 2019). At the beginning of this year, Thurmann was informed that accessible accommodation would be made available to her by the end of 2019, after an eleven year wait.

 

Another consequence of the failure to legislate for Personal Assistance is that it often leaves disabled people with no choice but to rely on family members for assistance. As a consequence, families become under strain, and disabled people cannot enjoy meaningful relationships with family members as equals. This is a threat to the independent living philosophy, as it reverts back to the notion that disabled people are objects of care instead of autonomous individuals. Morris (1993) notes that

In the context of economic inequality which accompanies physical impairment […] the need for personal assistance has been translated into a need for ‘care’ in the sense of a need to be looked after. Once Personal Assistance is seen as ‘care’ then the carer, whether professional or a relative, becomes the person in charge. The disabled person is seen as being dependent on the carer, and incapable even of taking charge of the personal assistance he/she requires. (Morris, 1993, p23)

It can be argued that portraying the disabled person as an object of care dehumanises both the disabled person themselves and those who care for them. The challenges facing family carers in Ireland have been highlighted over the last few years, most notably with an RTE documentary aired in 2017 entitled “Carers in Crisis”. One of the mothers in the documentary, Johanne Powell, who cares for her severely disabled daughter Siobhan, now in her mid-thirties, spoke about her reality as a full-time carer. In 2013, the Irish Times reported that Siobhan had been offered a place in a nursing home, which undermined Johanne’s request for home support so that Siobhan could continue living at home with her family (O’Brien, Irish Times, 2013). Although it could be argued that Siobhan is too mentally incapacitated to make any meaningful decisions over her own life, denying her the support she requires to remain in her own home evidently places strain on the mother/daughter relationship. In an interview on the Late Late Show in 2017, Johanne admitted: “I am bored, depressed, I want more, I want a life for myself” (www.irishexaminer.com, November 2016). Currently in Ireland, as noted by ENIL (Mladenov, Pokern & Bulic-Cojocariu, 2019, p18), a person’s eligibility for Personal Assistance is in part dependent on the availability of family members to assume ‘caring’ roles. This is problematic because aging parents who are currently caring for their disabled children cannot shoulder the responsibility alone, as the Carers in Crisis documentary demonstrated.

 

In conclusion, it is clear that the integrity of the independent living philosophy in Ireland has faced significant challenges since the onset of the economic recession. It is important to remember, however, that these challenges will not be eradicated by financial investment alone. Those who wish to truly embrace the Independent living philosophy need to have confidence in their own ability and power. In addition, they must reject the association of disability with charity and embrace their rights to the various supports they need in order to live independently. However the reality is that the status quo regarding Independent Living in Ireland will remain until Leaders themselves are truly empowered, through the implementation of legislation and the adoption of a rights-based approach, to make decisions affecting their own lives.

 

 

 

Bibliography:

Berghs, M (2014) The Global Economy of Care from Swain, J, French, S, Barnes, C and Thomas, C Disabling Barriers – Enabling Environments (3rd Edition) London: Sage

Bruce, A (2000) Towards A New Millennium (Independent Living Movement Ireland) www.ilmi.ie

Conroy, P (2018) A Bit Different: Disability in Ireland. Dublin: Orpen Press

Conroy, P, Dixon, S & McGrath, C (2006) Extending the Boundaries: Our Experience of Independent Living. Dublin: CIL Carmichael House.

European Network on Independent Living (2015) European Network on Independent Living: Personal Assistance Services in Europe 2015 from www.enil.eu/wp-content/uploads/2012/06/Personal-Assistance-Service-in-Europe-Report-2015.pdf

Evans, J (2011) Rights and Social Inclusion or Cuts and Social Exclusion (speech given atEurope’s Way out of the Crisis: The Disability Rights Perspective  European Day Conference for People with Disabilities Brussels, December 1st 2011) from https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/evans-The-impact-of-the-austerity-measures-on-disabled-people-in-Europe.pdf

Flaherty, R (2015) “Disability Protesters Disappointed after Meeting Taoiseach” from the Irish Times Online: https://www.irishtimes.com/news/social-affairs/disability-protesters-disappointed-after-meeting-taoiseach-1.2356009 Accessed 10 March 2019

HSE (2011) Time to Move on from Congregated Settings: A Strategy for Community Inclusion www.hse.ie

Inclusion Ireland (2016) http://www.inclusionireland.ie

Independent Living Movement Ireland (2017) Center for Independent Living Leader Forum Consultation Report: Personal Assistance Services from https://ilmi.ie/wp-content/uploads/2018/07/Personal-Assistance-Report-2016-.pdf

Independent Living Movement Ireland (2018) Campaign for Personal Assistance  https://ilmi.ie/wp-content/uploads/2018/10/ILMI-Personal-Assistance-Campaign-Leaflet-min.pdf

Irish Examiner (2015, author unknown) “’You grieve for the child you thought you were going to have’ Johanne Powell talks about life as a carer” from https://www.irishexaminer.com/breakingnews/discover/you-grieve-for-the-child-you-thought-you-were-going-to-have-johanne-powell-talks-about-life-as-a-carer-765894.html Accessed 20 March 2019

Jolly, D (2010) Personal Assistance and Independent Living: Article 19 on the UN Convention on the Rights of People with Disabilities. Leeds University Archive

Mladenov, T, Pokern, Y & Bulic-Cojocariu, I (2019) PA Checklist – A Tool for Assessing Personal Assistance Schemes. https://enil.eu/wp-content/uploads/2019/02/Mladenov_Pokern_Bulic-PA_Checklist.pdf?sfns=mo Brussels: European Network on Independent Living

Morris,  J (1993) Independent Lives? Community care and Disabled People (Part 1) London: Macmillan (accessed on leeds.ac.uk/disability-archive)

O’Brien, C (2013) “HSE offered disabled woman place in nursing home despite  wishes of parents” from the Irish Times online: https://www.irishtimes.com/news/social-affairs/hse-offered-disabled-woman-place-in-nursing-home-despite-wishes-of-parents-1.1416012 Accessed 14 March 2019

Pownall, S (2019) “45 year old Julia hopes her 10-year stay at a nursing home is at an end” from the Dublin Gazette online https://dublingazette.com/news/news-fingal/julia-swords-38924/ Accessed 19 March 2019

Ratzka, A (2017) Self-determination for Persons with Extensive Disabilities through Direct Payments for Personal Assistance from the Independent Living Institute:https://www.independentliving.org/docs7/Self-determination-direct-payments.html Accessed 1 March 2019

Toolan, D (2003) An emerging rights perspective for disabled people in Ireland: An activist’s view from Quin, S & Redmond, B (eds) Disability and Social Policy in Ireland Dublin: UCD Press

United Nations (2006) The United Nations Convention for the Rights of People with Disabilities www.un.org/disabilities/documents/convention/convoptprot-e.pdf Accessed 10 March 2019

Budget 2020 (Poem)

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In case you are wondering what triggered this  poem, there was no further investment into Personal Assistant Services in Budget 2020.

You want us to  be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.

See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now  we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.

And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.

Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.

The soft approach isn’t working,
and while I hate to curse
Your fucking lack  of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.

And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

I know what I want – and I want it now!

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Today is a mucky, awful day. It’s been leaking all morning, and probably will be for the rest of the week, according to forecasts. Nonetheless, I’ve been out of the house. My Personal Assistant and I have already been to the gym today, which not only helps me keep fit but also ensures that a hermit writer such as my good self does not become institutionalised within my four walls. Such a normal, mundane thing, isn’t it, going to the gym? Some dedicated people (read nutcases) even make time to go at six or seven in the morning before work. Often, if I go slightly later in the day (early afternoon) I meet other mums sweating it out before the kids barge in from school.

How wonderful it is to have that choice – to come and go as you please. To go to the gym, or to sit in a café salivating at a large chocolate éclair. To go to bed early and read, or to stay up until 4am watching the latest series on Netflix. The great thing about life is that it is full of choices. We make choices every day – mundane ones like what to have for dinner, and exciting ones like going travelling in Australia(!) – and many of us never give them a second thought.  And hell, why would we? Life is for living, right? We’re going to be dead long enough, aren’t we?

I have not been feeling too good in myself lately (hence all the extra exercise – it boosts my mood) because I know what I want. I want to be a writer, and even though I’ve spent hours this week applying for other jobs, I know that writing is the only profession that makes me feel whole, competent and useful. I love it because it’s a skill that can constantly be worked on, improved upon and polished. However it is so hard to focus solely on writing when I know that disabled people are collectively still fighting for the right to do what they want. And often these things do not include something as ambitious as going to Australia. I’ve heard people comment on how nice it would be to go for coffee once a week with friends, maybe go away for a night or two, breathe in new surroundings. We as a family often go for day trips, a drive somewhere, a change of scenery. It’s a must for your mental health!

During times when I myself feel low and inadequate, my mind wanders to those who don’t even choose what times they get out of bed, who can’t spontaneously decide to have a shower that morning, let alone leave the house to do their own shopping or socialise. If this was my reality, I can only imagine that my thoughts would be very dark indeed. To me, this isn’t living – it’s merely existing. And how many people in Ireland are  merely existing?

I heard someone recently say that they were grateful for the services they receive. And hey, there’s nothing wrong with a bit of gratitude, eh? After all, as a parent I have instilled in my daughter that we should always be grateful for what we have, that we should always be polite and say please and thank you. I am guilty of being grateful. I am especially grateful to my Personal Assistants for the work they do in helping me be independent. In fact I am so grateful that if my service were to be cut in the morning, that I would probably say something like “well there are people out there who need it more than I do, and sure can’t I manage, and I can still get taxis and buses and stuff”. Firstly, if I didn’t have a Personal Assistant, I guarantee that I would not have the energy to write rambling blogs such as this one. Secondly, my attitude of comparing my own needs to the needs of others perpetuates ableism and creates a hierarchy of disability. Instead of using the PA Service to achieve equality, it seems that those who “need” it more, such as those who need help with personal care, are prioritised. And logically, there is nothing wrong with this. However, this perception, exacerbated by the constant talk of lack of finances since 2008, has led disabled people themselves to lower their own expectations. And talking out is dangerous because if you are perceived to be a bit of an upstart, you risk having whatever little you have being removed from you.

This is the reality within a country that does not yet recognise Personal Assistance as a right. The right to a Personal Assistant so that a disabled person can live in whatever way they choose is currently not recognised in Irish law. Now that we have ratified this famous UN Convention on the Rights of People with Disabilities (UNCRPD) that I have harped on about more than once, the absence of legislation protecting our right to access Personal Assistance is no longer acceptable. Oh, and just to clarify, home help and Personal Assistance are separate services according to Article 19, so having access to one does not justify the denial of access to the other. In case you don’t believe me, I quote directly: “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.” (UNCRPD, emphasis mine).

A year ago, I had the absolute honour of being co-opted onto the board of an organisation called Center for Independent Living Carmichael House. Last September, we rebranded as Independent Living Movement Ireland  (ILMI). Today, ILMI launched a booklet entitled “Achieving a Right to Personal Assistance in Ireland” in collaboration with the forward-thinking Centre of Disability Law and Policy in NUI Galway, as part of their Disability Legal Information Clinic. It is a positive step towards creating an Ireland that eradicates the notion of disabled person as a medical “patient” and moves instead towards recognising Personal Assistance as a social issue and a basic human right. It fills me with hope that perceptions will change, sooner rather than later.

I want my right to Independent Living to be recognised. Before I die would be brilliant. Then I can focus on living my best life, whatever that may be.

For more information on the vital work of ILMI, or to join our  #PASNow campaign, please visit http://www.ilmi.ie.

A Little Help

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Dear whoever has the pleasure of reading this right now: forgive me for I have sinned; it has been almost two months since my last blog post. When I started college, I envisioned having more time to regale you all with trivial tales of my little life but being ever self-pushy and, well…me, that hasn’t happened. However I need to get this off my chest, otherwise I may implode.

I feel like I am living in a nightmare where everyone else is asleep but I am wide awake. I am slowly suffocating and there seems to be nothing I can do about it. Being in college for the last few months has confirmed to me that I live within a culture that constructs disability as a problem, that encourages us to blame ourselves for our shortcomings to deflect from the fact that we are oppressed and becoming increasingly voiceless.

Do you think I’ve lost the plot? I think so too.

For college, I decided to do my research essay on Independent Living in Ireland. May I say I wish I’d done it on something else, something I couldn’t give a crap about, because the more I read, the angrier I become. Sometimes I wonder would life be much easier if I didn’t know anything about the reality of Independent Living in Ireland. I wish I could shrug my shoulders, say ‘ah well, that’s just the way it is’.

But I can’t, so here I am.

Reader, I want you to think of your life as it is right now. Maybe you’re a student who studies hard during the week and parties harder at weekends. Perhaps you have the career you always dreamed of, one that brings you all over the world. You could be the proud parent of eight beautiful kids, secretly loving the chaos. Or maybe you’re a bit of a Lothario, with a different partner on your arm every ten minutes. It takes all sorts to  make this world. People with different views, dreams, outlooks, opinions. Everyone is different; that’s what makes us so interesting.

Now, imagine you only had control over your  life for forty-five minutes a day. Yup, forty-five minutes. Imagine you were the CEO of a multi-million euro company. How would you fly around the world to all your important meetings? Imagine you were a fun-loving, party-animal college student who had to go to bed at eight o’clock in the evening and get up at eight o’clock,  no exceptions.  Imagine being fully corpus mentis and expected to put up with an ‘expert’ who doesn’t know anything about you or your life making major decisions about how often you go to the toilet, how often you shower, what you can eat for your dinner.

Welcome to being disabled and needing assistance in 2019, and it’s like a parallel universe. Often it’s like looking at the world from inside a glass bubble, but not quite being able to reach it. It can get lonely in there, and suffocating. And no-one dares break that glass bubble in case someone gets hurt. It’s a world of risk assessments, of the professionals in the white coats, trying in vain to convince people that they truly believe in empowerment and equality. Oh, you can be empowered, so long as these experts are given the power to empower you. They will decide how much assistance you need based on some ticked boxes on a long form. If you have pride, this exercise will be particularly painful. Nobody likes to admit that they can’t do things by themselves. Isn’t the measure of a man/woman the ability to do things by himself/herself?

It’s best to be as compliant and agreeable as possible. No-one likes a troublemaker. And it’s not as though you making a stink is going to make any difference. Everyone knows what happened when Winston Smith from 1984 questioned the system. The system broke him, and in the end he was just grateful that Big Brother had saved his life, even though it was this system that made his life unbearable in the first place.

I fear I’m not making this point very well – Independent Living and freedom of choice is not a disability issue. It is a human rights issue, and one that effects every single one of us. How, you might ask. I don’t believe that ‘non-disabled’ people should support the disability movement just in case they become disabled one day, though I respect people who do have this mindset. I believe that if you don’t believe that the lives of disabled people are worth investing in, if you don’t quite think that every one of us, regardless of impairment, has something to offer, then you are perpetuating an idea of “them” and “us”.

I have postponed penning this blog for about a month now. I didn’t want to upset anyone. I don’t want to appear ungrateful for what I have. Then, this evening, I wondered how many people feel the same way I do, and are also afraid to say anything? How many of you out there are tired of fighting the system? How many of you have become apathetic because it’s really only a myth that the little people can win?

Apologies to those with screenreaders for the shouting here, but –  THESE ARE OUR LIVES.

We only get one life. Are we going to spend the rest of ours being told what to do, waiting to see who arrives to get us up out of bed? We don’t want to be taken care of, we want to be empowered, enabled! We are only going to live once so let’s fight for the things that really matter. Going for that cuppa and getting the cream bun that’s bad for us. Going clubbing and getting so roaring drunk that you end up with your head in the toilet at the end of the night. Taking that job in Dublin that you’ve always wanted. And above all, having the control and the assistance needed, as decided by you, to do those things that all of us should be taking for granted.

Until this is a reality, I don’t think we can afford to be complacent. After all, everyone needs a little help sometimes.

 

Shameless plug: Independent Living Movement Ireland are running a #PASNow Campaign, which calls for the definition and legislation of Personal Assistance. Achieving this would help bring Ireland in line with the UN Convention on the Rights of People with Disabilities. If you are interested, please visit http://www.ilmi.ie.