Tag Archives: independent living

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.

Tuesday Thoughts: Empty Batteries

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(written Wednesday, 20 March 2024)

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

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

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

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

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

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

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

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

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

October, I sheepishly admitted. 

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

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

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

Tuesday Thoughts: Life is But a Dream…

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Getting up at six isn’t easy, but I know I’ll feel better afterwards. While my husband snores beside me after coming home late from work, I pull on the tracksuit that I’ve laid out the night before. I always hate this part, and find myself questioning the auld sanity, but I know I’ll feel better afterwards. I always do.

Down the hall, I can hear the familiar sound of the front door opening, the clinking of my favourite bowl being extracted from the cupboard and the shaking of a cereal box. I look at my watch: 6.30. Right on time. I sit into my wheelchair and go down to my kitchen, where Mary* is waiting for me. She’s poured me exactly a third of a pint glass of orange juice and half a bowl of Bran Flakes, though she’s waited for me before pouring the milk; she knows I don’t like soggy cereal. She also knows I don’t like too much milk. As I munch it down, she clears the breakfast things away, wipes the counter and sweeps the floor. Then it’s 6.45. Time to go.

As always, Mary has started the car so that the windscreen is clear and, of course, so that it’s nice and toasty on this frosty morning. She lowers the ramp and I drive into the car, waiting for Mary to secure the chair with the clamps, just as I’ve trained her to do. Then I’m whisked to Aura, our local gym, for my morning workout session. Mary has sat in on my physio sessions, so she knows exactly what I should be doing. She sets up the equipment for me, making sure that I’m seated correctly so that I don’t strain myself, and so the physical torture begins. Mary laughs, saying that the only weight she’s lifting will be her cup of coffee to her mouth. Too early for this shite, she says.

Afterwards, it’s back to the car and a quick stop at the shop for milk and bread. I give Mary my card so that she doesn’t have to undo the clamps for the sake of a few minutes. She returns with my card, a receipt and the groceries, standard procedure although I’ve trusted her with far more important and delicate things. Then it’s a quarter to eight and back home, where the preteen has just risen. I put on two slices of toast. Mary takes out the plate and the butter. The preteen is unusually chatty today. She’s used to Mary; she knows what Mary’s purpose is, and more importantly, what it is not. Mary never comments on my child’s behaviour. She knows that it’s not her place.

After the child leaves, Mary leaves too. Everything is tidy, meaning that nothing will distract me from my work (apart from my dogs barking at each other, or at random birds flitting past the window). It’s nine o’clock, and I normally have my first thousand words completed by eleven. By that stage, I’m fit to drop, and typically at this time, depending on what household chores await me, I take a forty-five minute nap, just to keep myself right. Then it’s dogs on leads and we go for a short walk, to clear the cobwebs from my brain.

When I return home, Emma* is waiting for me. We cook the evening meal together: she chops the veg and preps the meat, I fry it up. She also cleans as we go, so that we don’t have a big job ahead of us later. My favourite is homecooked lasagne, or chicken stir fry. I’ve taught Emma how to marinade the chicken in garlic and soy sauce. It’s the young’un’s favourite meal.

No two days are the same. Sometimes I might need Emma or Mary to accompany me to Dublin for medical appointments. Other days, I might need help in organising the materials for the Creative Writing Classes that I teach across Laois and Offaly, or the grinds I give to Leaving Cert English Students. We also tour the country a couple of times a month in my accessible van, giving disability awareness training to secondary school students. On those days, a Personal Assistant might have to work longer hours, and so I allow them to take time in lieu on a less busy day to compensate. After all, it is their dedication and attention to detail that allows me to live the life I do, a life entirely of my own choosing.

I jest.

This is not my life. Well, it is and it isn’t. I wish I was motivated enough to get up at six in the morning, but alas, here we are. It’s certainly the one I aspire to, the one I try to fulfil. And, to be fair, I have a good life. I’m married, I have a child, I work as much as I can freelance. And I do have three dedicated, hard-working Personal Assistants, who are always willing to go the extra mile for me. They are simply wonderful people and I love them to bits.

However, I don’t necessarily have a service that offers the freedom and control that I might like. Nor can I choose my own times, owing to the demand on the service. I cannot emphasise enough how dedicated my PAs are, and how much pride they take in their work. It is nothing short of remarkable, considering how exhausted they must be; all of them are required to work with multiple clients on any given day. It takes a special kind of person to remember the preferences of each individual Leader, to try and fulfil somebody’s needs in a limited space of time, and to do all of this with a smile and not a hint of a complaint. For this, I am truly grateful.

That said, this style of service provision does not do the Leader or PA justice. For the Leader, it offers no opportunities of spontaneity and, depending on the nature of their impairment, leaves them at risk of isolation from their communities, especially in this post-covid world where everyone (rightfully) is sick of online meetings, and in-person events are becoming more prevalent. Remember during the height of Covid, when we weren’t “allowed” to meet each other, go for coffees or even take our time looking around the shops? For some disabled people, this continues to be their reality. During lockdown, I found it interesting, and admittedly amusing, to hear that some people couldn’t hack it, and yet for some reason, it’s okay to imprison disabled people in their homes as long as they have access to the internet (or not, as the case may be).

For the PA, this style of work – hopping from client to client – is more lucrative, but exhausting. At the moment, there is little distinction between PA and home help. Typically, a home help is given approximately forty-five minutes to help a client out of bed, get them washed, dressed and have breakfast. Then off that person goes to do the same for somebody else. Home help agencies have high turnover of staff, and it’s not difficult to see why. Often, they might have to drive from one end of the county to the other, just to do an hour’s work. I’ve heard of home helps working twelve-to-fourteen hour shifts, visiting six or seven different people in this time. Six or seven people, with different needs and care plans, who may only be allocated enough time to be washed and fed, if that. What kind of life is that, I ask you? Could you live like that and not lose your brain? A study conducted by Pauline Conroy found that a Leader who is lucky enough to receive a service has a PA for about 45 minutes per day. How is it possible to squeeze a meaningful life into less than an hour a day?

This is why I find myself writing about the same thing over and over again. I’m sick of reading about the “poor, vulnerable disabled people, suffering at the hands of cutbacks.” I know hundreds of disabled people, and I cannot think of a single one that I would classify as “vulnerable.” Those I consider “my tribe”, in the words of artist Mary Duffy, are intelligent, strong, confident, capable and willing to contribute. Willing to fight for the quality of life that they deserve, and always have deserved. Committed to ensuring that the authentic voices of disabled people are heard and taken seriously by the powers that be. But they are also tired. Tired of having to fight for every little thing. Tired of the excuses “there’s no staff”, “we don’t have that kind of money.” Tired of being made to feel guilty for their lack of gratitude: “There’s so many people who don’t have what you do.”

As a collective, disabled people have achieved so much in their lifetime for the advancement of their human rights. But wouldn’t it be lovely to be able to focus on the minutiae of everyday life instead, such as “I want to go for a coffee with friends at one o’clock” or “I think I’ll have a lie-in in the morning”?

Independent Living Movement Ireland (ILMI) are committed to making this a reality. Formerly known as the Center for Independent Living, ILMI have been working since 2018 on their #PASNow Campaign, which calls for the legislation of the Personal Assistant Service (PAS). This would have many benefits. Firstly, it would offer some protection against the savage cutbacks that the service has endured since 2008 onwards, as ideally, the funding for PAS would be ringfenced. Secondly, it would be a step towards recognising that the PA service should be rights-based, not just something given on the basis of an impersonal, medical assessment. This would mean that Ireland could fulfil their obligations under Article 19 of the UNCRPD, which details the right to independent living. Thirdly, and perhaps most significantly, disabled people would be independent of their families and loved ones, absolving them from labels such as “burden” or “object of care”.

On Wednesday, 22 November 2023, ILMI launched their research paper “Not in the Driving Seat: Reliance on family for supports and the impact it has on disabled people.” The reference to “driving seat” comes directly from Martin Naughton, who is internationally recognised as being one of the main figures behind bringing Independent Living to Ireland. The report offers a counternarrative to the traditional spiel of disabled people as vulnerable. The struggles of family carers experiencing burnout has begun to be recognised over the last few years, but this is the first study focusing on the physical and psychological impact that relying on family has on the disabled person themselves. Des Kenny, close friend and ILMI Chairperson notes: “Investment in supports that liberate disabled people will also liberate family members to move from roles where they provide support for their partners, children, or siblings and can focus solely on their family relationships.” I would like to personally commend all involved in this work and to thank ILMI for continuing to push its #PASNow Campaign.

I know I have written about this many times before; this blog might as well be called “The fight for independent living.” And I’m sorry if you’re sick of reading it; trust me, I’m sick of writing it. Yes, we have made great progress in shifting the thinking around disability from pity and oppression to empowerment and rights, but even after thirty-one years, there is still so much to do. It’s tiring, and easy to lose heart, but the only way we can counteract the narrative of pity is to keep pushing our own, in the hope that one day, it will be universally understood. In the hope that one day, in the not-too-distant future, disabled people will have the freedom and choice to do what they want, whenever they want to do it.

*Mary and Emma are entirely fictional, similar to the right to Independent Living in 2023

The Important Conversations – Tuesday Thoughts 4

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(Published Sunday 25 June 2023 due to holidays)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Available on Amazon as paperback and for Kindle:

The Time is Now #PASNow

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Ah, haven’t you all missed me blogging about the same thing over and over again? Once again, I’m writing about an issue close to my heart: the need for Personal Assistance to be recognised as a legal right in Ireland.

Independent Living Movement Ireland (ILMI) have relaunched their #PASNow or #PersonalAssistanceServiceNow campaign. The aim of this campaign is to raise awareness of the important role the Personal Assistance Service (PAS) plays in the lives of disabled people across the country.

So what’s the story behind this campaign?

In 2018, Ireland became the last European country to ratify the United Nations Convention on the Rights of People With Disabilities (UNCPRD). According to Article 19 of the UNCRPD, disabled people should have access to a range of services to enable them to live independently, including home help and Personal Assistance.

Currently, even with the ratification of the UNCPRD, Personal Assistance is not recognised as a right in Ireland. In fact, the Personal Assistance Service was launched by the Center for Independent Living in 1992 as a pilot scheme, and it remains a pilot scheme to this day. This means that funding for this scheme could be relinquished at any time, leaving thousands of disabled people across the country without a service that makes a meaningful difference in their lives.

Surely that couldn’t happen? Don’t be so sure. In 2012, a group of disabled people were forced to take action when Health Minister James Reilly announced sweeping cutbacks of €12million which would have eradicated the Personal Assistant Service. Although these cuts were reversed, the reality is that 44% of Leaders (PAS users) only receive services for the equivalent of 45 minutes a day (Source: Pauline Conroy, Disability in Ireland, 2018). Could you squeeze your life into less than five hours a week? Furthermore, there are no guarantees that following the financial devastation that COVID-19 has caused, that funding for the PAS is safe into the future.

Without the right to a PAS, many disabled people are living mediocre lives, not reaching their true potential. Many young people across the country are dependent on aging parents to cater for their personal care needs. Others (it is estimated to be 1,300 people at least) are living in unsuitable nursing or residential homes, with little control over what time they get up, when and how they are showered and dressed, or who carries out these tasks for them (as highlighted in a HSE report entitled Wasted Lives: Time for a better future for younger people in Nursing Homes). Julia Thurmann was one such lady who was trapped in a nursing home for over ten years, when all she needed to live independently was accessible housing and personal assistance. Her story is not an isolated one. This is not acceptable in twenty-first century Ireland.

So what exactly are disabled people looking for?

Independent Living Movement Ireland has divided what disabled people are looking for into five headings:

  1. Define: The PAS needs to be defined as a service that offers choice, dignity and respect. In order to do this, funding for this service needs to be ring-fenced and separated from home help services.
  2. Legislate: Make PAS a legal right in Ireland so that those who are wrongfully denied this service have recourse. That way, Ireland will be compliant with Article 19 of the UNCRPD.
  3. Invest: There has been no substantial investment into the PAS since 2008, despite a growing demand for the service. ILMI has asked for the PAS budget to be increased by €12.5m annually. Woah, that’s a lot, you say. Well yes, but it’s just as costly, if not more so, to have disabled people living in unsuitable residential accommodation. Or to have a family member denied the chance of pursuing a career because they have assumed the role of unpaid carer. This creates long term dependence on the State and puts pressure on the HSE over something that is not a healthcare issue but rather a human rights one.
  4. Standardise: Anecdotally, disabled people know that it can be more difficult to access PAS in some areas than in others. Introducing a single standard assessment of need across all HSE CHOs (Community Health Organisations) would make the process fairer with the removal of unnecessary bureaucratic barriers.
  5. Promote: A PA is not a carer, nor does he/she know what is best for the leader. The Leader should have full control over the service. This message must be strong in order to shatter the assumption that disabled people are incapable of knowing what’s best for them. Regardless of one’s impairment, living independently is a basic human right.

Disabled people should not be reduced to downplaying their abilities in order to access services. They are not objects of care but equal citizens who, with the right supports in place, have so much to contribute to our communities and the economy.

So, how can I help?

There are so many ways to get involved in the #PASNow Campaign. For further details, please email info@ilmi.ie. Showing solidarity sends a powerful message that every single one of us deserves to have choice and control over our own lives.

Personal Assistance Should Be a Right

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(This article was first published in the Tullamore Tribune week ending 20 December 2019. Many thanks to Ger Scully, editor of the Tribune, for this).

On the 19 November 2019, the possibility of legislating for Personal Assistance as a legal right was debated by the Dáil. The motion was brought forward by Donegal TD Thomas Pringle from Independents For Change, who worked in collaboration with Independent Living Movement Ireland (ILMI) in promoting the right for disabled people to access Personal Assistance in Ireland.

 

The Personal Assistance Service and Independent Living are intertwined. In their truest form, Personal Assistants are not “carers”, nor do they have the right to make decisions on behalf of the disabled people they work for. A Personal Assistant has been defined by many as “my arms and my legs”, in other words, the role of a Personal Assistant is to assist with or perform tasks that the disabled person (known as a “Leader”) cannot do for him or herself. The Leader is considered to be the expert in their own needs and directs the Personal Assistant on what he/she wants done. When the service is delivered properly, the PA does not “look after” the Leader, but rather enables him or her to live a fulfilling life – enter employment, access education, enjoy social events and raise a family – depending on the Leader’s own life goals.

 

In theory, a Leader’s service is customised to suit his or her own lifestyle. However, in reality, only a select few disabled people in Ireland are enjoying the full benefits of Independent Living. Since the onset of the recession in 2008 the lack of financial resources, coupled with a growing demand for a Personal Assistant Service, has led to overmedicalised assessments and more stringent criteria, leaving many disabled people with little or no service. Emphasis has been placed on “high dependency needs” such as feeding, showering and dressing. While this might make sense to the powers that be, in reality this can lead to a depressingly low quality of life for the Leader concerned, being all dressed up and nowhere to go.

 

Many Leaders make a distinction between a “home-help” service and a PA service. A home help works to a rota provided by a care organisation and merely assists clients with basic tasks such as Personal Care and feeding. Often, a client has little or no say in what tasks they can be assisted with, nor do they have control over who delivers these tasks. It is not uncommon for a “client” to be assisted by many different people, and a disabled person might not know who is assisting them from one day to the next. Conversely, a Personal Assistant is recruited by the Leader themselves, and matching personalities, as well as a willingness to carry out certain tasks, is a crucial element to the success of any PA/Leader relationship.

 

The original intention behind the service was that the Leader could dictate what they wanted to do and when, just like every other person in this country. Moreover, the philosophy of independent living espouses that the Leader should choose who assists them, what they need assistance with, and when. A distinct benefit of the PA service is that it reduces our reliance on our family and friends so that we can enjoy a relationship as equals, not as “carer” and “cared for”.

 

However, in spite of the ratification of the United Nations Convention on the Rights of People with Disabilities (UNCPRD), Personal Assistant Services are not currently a right for disabled people in Ireland. Consequently, this leaves the service vulnerable to the constant threat of cutbacks, as the government illustrated in 2012 when it endeavoured to eradicate the entire service overnight. People power alone, in the form of demonstrations outside the Dáil saved the service, but the PA service in its current form is not allowing disabled people to enjoy a reasonable or enjoyable quality of life. A report published by ILMI in 2017 conveyed that nearly half of people in receipt of PA services were getting the equivalent of 45 minutes a day. This is entirely unacceptable and clearly illustrates the need to legislate for PA Services.

 

Therefore, the motion which was brought before the Dáil and subsequently passed unanimously was a hugely historic day for disabled people in Ireland. It heralded a shift away from the notion of disabled people as passive recipients of care to people who had human rights and who deserved access to the tools that enable them to participate equally in society. For the first time, Personal Assistance was debated in the Dáil using the language of rights, signalling a shift away from the misperception that disabled people are merely passive recipients of care.

 

Alas, although this small battle has been won (and how sweet the victory does taste!) the work for those who want equality for disabled people is far from over. We cannot afford to be complacent or to take anything for granted. Now is the time to educate people, to create awareness of the importance of our PA services and to ensure that our government delivers on its promise to make independent living a basic human right.

 

For more information on the ILMI #PASNOW Campaign, visit www.ilmi.ie or follow us on Facebook www.facebook.com/ILMIreland  or Twitter @ILMIreland

 

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

What do we want? A PA service! When do we want it? Now!

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Ugh. I’ve been thinking lately about how many times I’ve been torn between pursuing other journalism opportunities and how often I end up just posting here instead. This blog is too accessible, too easy. Perhaps I should delete it, the culmination of five years’ solid work, publish it in book form, and charge extortionate amounts of money to people who want to read it. I give myself away, far too easily as a writer.

On the other hand – and I can’t believe I’m saying this – some things are more important than money. And there are some things money can’t buy. Freedom of choice, equal rights – those kind of things.

On Tuesday, 19 November 2019, an important motion is being brought to the Dáil. The motion proposes the legislation of a P.A. service. It’s safe to say that the majority of disabled people who currently use the service understand the rationale behind legislation. For too long, there has been a level of misperception that disabled people, in the words of Martin Naughton, are “to be cared for rather than cared about.” Since the onset of the recession, a culture has been created between those who care about the Independent Living Philosophy whereby it is often perceived to be “safer” to stay quiet and accept things, especially if people are afraid of losing the little provision they have.

Historically, independent living has never been approached as a “rights-based” issue in Ireland. The establishment of the Center for Independent Living in 1992 marked a monumental shift away from the charity model of disability to a rights-based approach. It celebrated the individuality of disabled people and their diverse lifestyle choices. However, as the demand for this revolutionary service grew, so too did the restrictions of it.

The HSE funds the Personal Assistant Service at present. However, significant investment is badly needed to enable people to live full, meaningful lives. Pauline Conroy, in her book entitled A Bit Different? Disability in Ireland notes that in 2017, forty-five percent of Leaders (service users) were only receiving a mere 45 minutes a day on average of Personal Assistance, largely for Personal Care. Many activists have been crying out for years for the need to create a fund exclusively for personal assistance. In our minds, “carers” tend to follow the “medical model”; disabled people are viewed either as “problematic” or as passive recipients of services, incapable of having their own voice or even of making the most basic decisions about their own lives. Whereas in the true definition of the Personal Assistant Service, the Leader is placed, as Martin Naughton once said, in the “driving seat” of their own lives.

The debate coming up next Tuesday is an important one. It won’t lead to all of us waking up on Wednesday morning in a world that has changed overnight, where we will all be able to access the level of assistance we need to live fully independently. At the very least, however, we will be creating a conversation about the need to approach Personal Assistance as a right, not as a lottery depending on your address. It’s about urging people to consider the importance of free will, of independence and choice.

If you would like to create awareness of independent living, or if you would like your local representative to debate this motion in the Dáil next Tuesday, please email me at sarahfitzgerald1984@gmail.com and I can send you an email template.

Finally, if I’ve kept your attention this far, you might be interested in this short story which details the reality of dependency and uncertainty for disabled people in Ireland.

 

(For more info on the #PASNow campaign, email me as above or visit Independent Living Movement Ireland’s website, ilmi.ie)

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.