Grasping the Nettle

Posted on November 30, 2022 by sarahfitzgerald1984

I believe in the importance of words. I’m a writer, someone who tries every day to forge a career by stringing words together. I know that some words can have more impact than others. Some words are deliberately provocative, while others can hurt as silently as a nettle’s sting – irritating, but unnoticed by the nettle itself. The nettle’s sole purpose isn’t to hurt; it’s to protect itself, to grow. In fact, nettles have fantastic healing properties. And though I’m not an adventurous eater, one day I hope to accumulate enough courage to try nettle soup.

It’s also said that if you grasp a nettle, tight in your hand, it won’t sting, or at least not as badly as it might if you just brush against it gently. And of course, the good old dock leaf is a tried and proven antidote to that peppery red rash. But, I needed more than a dock leaf to draw out the sting of the consultant’s words in Tallaght two weeks ago.

I’ve had pain on and off for over two years now. I’ve been on a strict physio regime, which I’ve obediently adhered to, but some nights, the cramping in my leg keeps me up for hours. Which means that I’m tired the next day, too tired to use my exercise bike or do any writing. My physio said that I have to choose my tasks carefully, and frankly, I detest being told what to do. Granted, some of the things I’ve been known to do is downright ridiculous. I used to dust my skirting boards on a regular basis. I like hoovering on my knees because it’s easier to keep my balance, also, it’s easier to spot the dirt on the floor. The physio has forbidden me from doing these things, which only makes me do them more. Surprise, surprise!

So, when I went to see the consultant in Tallaght, after travelling all the way up on the train, I was devastated to hear him say the words “long-term chronic pain condition.” I hadn’t been calling it that; I’d been referring to it as “a bit of leg pain,” “sciatica” at worst. (They don’t think it’s sciatica, but they reckon the nerve is trapped inside the periformis muscle). The thought of having broken sleep indefinitely was devastating, but there’s nothing they can do. I’ve refused the medication offered because I’ve read about the side effects, and owing to the involuntary movements, I’m not a candidate for pain injections. Go home, and do physio. It may improve, it may not. Nobody knows.

The guilt I felt was overwhelming. Despite all of my best efforts, I was now feeling like a burden to my husband and daughter, something I’d never wanted to happen. I felt like I’d failed my parents as well, after they’d invested so much time in making me mobile and independent. Chronic Pain condition. A different CP, another label used to define me. Hadn’t I enough of those already? The consultant said that all I could do was go home and do my own research. I’ve changed my diet, and I’m starting to come around to the idea of pacing out more onerous tasks. One thing that my husband and I discussed was getting a manual chair for knocking around the house in, on days when the pain is particularly bad. But I can’t bring myself to do it. Every time I look online for chairs that might be suitable, or asking the HSE for one, I end up folding the laptop screen down and saying not yet. I’m not ready. I might become lazy, or overdependent on it. I’m tired of being tired, though, and something’s gotta give.

Yesterday, I was trying to write, when a friend of mine called in unexpectedly. I was so excited to see him, having not seen him in person since the beginning of Covid. We had a good chat about various things, and suddenly he smiled and said, “Do you realise that something you said changed my life?”

I laughed. “Something I said? Take all my advice with a grain of salt.”

He recounted the incident. It was about seven years ago. We’d been at a personal development day together, and the facilitator asked us to set out our short term, medium term and long-term goals. My friend’s long-term goal was to be able to walk from his house to his gate, without his stick. And in front of everyone, I’d asked him why this was so important to him.

I relived that horrible feeling of shame. “I regretted it the minute I said it. I’ll never forget how hurt you looked.”

He smiled at me. “It was the best thing you could have said to me. After that, I decided to concentrate on what was important, and what I could do. And to re-evaluate my relationship with my stick. This stick enables me to walk and keep my independence. Because of the stick, I can stay mobile. I can go to meetings and get involved in local activism. It’s nothing to be ashamed of. You taught me that.”

It’s true – I did. I really wanted my friend to understand how the social model liberates us from blaming ourselves for our disabilities. And yet, here I am now, having to wrestle with a whole new meaning of what independence means for me. A definition that, for much of my life, focused on my physical abilities and strengths. I’ve always been fit. I used to cycle everywhere. I’m still walking a bit, something I didn’t think I’d be doing when I fell and acquired my injury, two years ago. But as difficult as it is, I need to reassess my priorities. Is it really important to be able to scrub the grouting of my tiles with a toothbrush? Can I successfully balance the roles of mother, wife and writer while avoiding as much pain as possible?

If I had the answers to those questions, I’d be laughing. The only way I’ll know is trial and error. Isn’t that how we make all our greatest personal discoveries? I wish I could be a little easier on myself. If I can find the courage to grasp that nettle, maybe it won’t sting too much in the long run.

Home

Posted on July 26, 2021 by sarahfitzgerald1984

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.

My Journey Into Activism

Posted on April 12, 2021 by sarahfitzgerald1984

(This blog has been inspired by a group of stories which I hope will be published soon, called Conversations about Activism and Change)

It was never my life ambition to work in, or to have much to do with the disability sector. I came from a background where much of the focus was on self-improvement, on getting better, on fitting in. The closest I had experienced to disability activism as a teen was when I stayed in Clochan House with a group of seven other disabled teenagers, (including my future husband!), and we decided to keep in touch. We worked together to raise money to go away for a week to Cuisle in Co. Roscommon, which was run by the Irish Wheelchair Association. I remember feeling lazy and as if I’d let the group down because I wasn’t comfortable with the notion of raising money.

I remember one of the fundraisers entailed holding a raffle, and so I ventured out around my housing estate on my blue tricycle, knocking on doors for money. Some of these families could barely feed themselves. I remember going to one particular door. The garden was overgrown and the front step was unkempt, the paint chipped away. When I rang the doorbell an elderly lady answered, looking frightened. I think she was expecting to be mugged. She saw my money bag and the raffle tickets, and she felt sorry for me! This turned my stomach. I remember wishing that I could make a real difference, without having to blackmail others for money.

Having the privilege of availing of mainstream education had its drawbacks. I spent so much time trying to prove myself and fit in that I never gave any real thought into my identity as a disabled person. I always maintained that I wasn’t ashamed of my impairment, but yet I refused to embrace it. In secondary school, when I was exhausted from studying for my Leaving Cert, I was offered the use of a manual chair, but I turned it down. I thought that using it would mean that I was lazy and that I was somehow “less than”. Even though I realise now that some of the other students would’ve had learning disabilities, diagnosed or otherwise, I was one of three visibly impaired students in a school of seven hundred girls, and I couldn’t afford to draw more attention to myself. All I wanted to do in those days was fade into the background, pretend I didn’t exist. At times I wanted to do more than pretend and I know now, from hearing the stories of other disabled people, that I wasn’t alone in feeling isolated.

When I started my English undergrad in Trinity, my impairment didn’t seem to matter. From day one, the focus was very much centred around what could be put in place to make my life at university not only easier, but enjoyable. I was offered a laptop, a library assistant, notetakers, the use of an electric wheelchair, help with laundry and housekeeping. At first, I thought the disability service had gone overboard and that all these provisions would make me lazy, until I realised that the only thing standing between myself and a First-Class Honours was my attitude to my studies. All of the other barriers had been removed. This was my first true introduction to the social model, and it was empowering. When I completed my first year exams in Summer 2004, I decided to stay on in Dublin and I worked for Trinity’s Student Disability Service as an “access auditor”, possibly the toughest two months’ work I’ve ever done. Undertaking the audit taught me to approach inclusion from a cross-impairment perspective and to think of creative ways to remove the barriers to full access. Later, in 2011, when a pathway was constructed through the infamous cobbles in Front Square, I saw that even the seemingly immovable barriers could, in fact, be removed.

I learned so much living in Dublin for those four years, and most of it had nothing to do with English Literature. By the end of my second year, I was hungry for another summer living in Dublin. My Personal Assistant at the time tried to get me a job with PWDI [People with Disabilities in Ireland], but that didn’t work out. Trinity did not have the funding to take me back on that summer (although they took me back on for the following summer break, the summer of 2006). I started to panic. Trawling the small ads in College was unfruitful, and although I did secure some work as a freelance audio transcriber, it wasn’t enough to pay the bills. It was then that my PA came across a man called Martin Naughton, who said that he might have a job for me. I found this very weird. How could a man, who didn’t know the first thing about me, have a job for me?

Intrigued, I donned the cheap Dunnes Stores suit that I kept for job interviews and went with my PA to Chief O’Neill’s in Smithfield in Dublin. I remember waiting in the main seating area when a man in a red hat and red jumper whizzed into the room in his wheelchair. I remember feeling nervous and incredulous all at once. I’d never met a disabled person before that had that aura of self-importance, that sense of self—worth before. He was confident and unapologetic, and after five minutes of meeting him, I found myself wanting to be more like him. Little did I know that day that I was chit-chatting to one of the main founders of the Irish Independent Living Movement.

After bullshitting my way through the interview, which was more a rambling conversation about the definition and purpose of the ILM, I was told that I was the Dublin Leader Forum Coordinator and that I had to set up the Forum as per a working document written by Eugene Callan, who transpired to be nothing short of an absolute gentleman. I was offered the job much to my relief – the finances relied solely on it! – but at the baby-faced age of twenty-one, I hadn’t the foggiest idea what I was doing. And when I went to google Martin Naughton, it kept drawing blanks. I would soon learn about this great man and how his actions, alongside other activists, had such a profound direct impact on my life. Through working with Martin, I also had the opportunity to meet other people including Donal Toolan (from Inside I’m Dancing), Eileen Daly, Rosaleen McDonagh and Hubert McCormack. But these people were like no other disabled people I’d ever met before. They were talking about rights and taking back control from service providers and just fighting to live their best lives. I had never heard disabled people speak like this before. I just assumed it was a given that we had to fight for things and that we had to conform in some way. That summer changed my entire life, though I didn’t know it at the time.

In 2007 I graduated from Trinity with that all-useful English undergraduate degree and found myself pondering on what to do next. I did an interview for an internship with HP in Leixlip and I also wrote to Offaly CIL offering my services as a Creative Writing tutor. I got offered both jobs, but I turned down the Leixlip job, because it wasn’t worth the wages minus the rent in Leixlip at the time – the height of the Celtic Tiger. I still regret this; it may have altered my career path. A couple of months later, I was offered a FAS scheme as a “researcher” for OCIL. I was doomed from the outset. Having worked with Martin, I knew what independent living was supposed to look like but, being funded by the HSE, we had to be careful about projecting the conflicting messages of independence and restricted freedom. Furthermore, by September 2008, the threats of cutbacks to services started to become real, and I was reluctant to preach a message that could result in me losing my job. I constantly felt an inner conflict between wanting to keep my job and keeping true to the Philosophy. It was a miserable time that adversely affected my mental health. I went from being an occasional smoker to smoking heavily for two years. I lost interest in reading and writing. I even found myself sucked back into the throes of a dormant eating disorder. The most frustrating part of it was that I was passionate about Independent Living, about rights and equality for disabled people, but yet it felt like Independent Living was succumbing to the medical model. Often, I would go into work and spend the five hours scrolling through the internet. I would smile as I read about Ed Roberts and Judy Heumann and the emergence of a worldwide movement. But it felt like something that was “out there,” that I was not part of. And I yearned to be part of something exciting, something to be proud of.

In 2011, I decided that it was time to be brave and give my career a facelift. I was starting to feel like a liability in OCIL and I didn’t feel comfortable continuing as the tokenistic cripple in the office, so I contacted Declan Treanor in Trinity, who said he might have a job for me. I also started writing again in earnest and after a few months, set up my own blog – a Blogspot one – and starting sharing random scribbles and thoughts, which were surprisingly well received. Seasoned blogger Suzy Byrne even asked me to do a guest blog for her highly popular Maman Poulet, which was widely read and well received – an honour so early in my writing career. Declan asked me to interview the Provost of Trinity prior to his departure, in the hopes of pitching the article to the Irish Times. Things were starting to look up when, damn! – my brain stopped working for no apparent reason. Why was I so tired? I put it down to the extra work I was doing, on top of the job with OCIL, but I told myself I had to push back against the tiredness, that I’d have to get used to it. I was eating healthily, lots of exercise, going to bed early, but was still so drained.

On 18^th June 2011, John Paul said to me, “Your last period was the second week of May, wasn’t it?”

Oh I’m hardly pregnant, I thought. I’m just drained from all the extra work I’m doing.

On 20^th June, I did a pregnancy test. To my surprise (and I won’t lie, a fright also), it was positive. Of course, this changed everything, but little did I know it – she – would be the best thing to happen to me. Because of the pregnancy, my brain continued to jellify over the coming weeks, and soon I had to abandon my plans of impressing Declan Treanor with my words. My focus was now preparing to welcome our child into the world, which involved countless meetings with public health nurses, physios and OTs. Pregnancy was such a magical but draining experience. I was so tired all the time and I secretly wondered how I was going to muster up the energy to look after a small baby. I continued to work until a month before Alison was born. I was never going to win any “Employee of the Year” awards, but I managed to keep punching in time until the first week in January. I couldn’t really afford not to.

So, I have always been quite vocal about the challenges we faced as disabled parents when Alison was born. I feel that if my story can be used as an example of how new parents with disabilities shouldn’t be treated, then my story serves its purpose. The experience really shook me because I had lulled myself into a false sense of security. I thought I’d done the sensible thing by reaching out to the “professionals” for help before my daughter was born. Once Alison was in my arms, the attitude quickly shifted and I confess, I was not strong enough to argue back like I once might have done. I found myself compromising instead of fighting my corner out of fear that if I didn’t, I would be bringing home an empty carseat from Mullingar Hospital. I initiated breastfeeding even though I had never intended on feeding her myself. I was willing to do anything to be able to bring this little baby home. As a result, after being told I would be a danger to my own baby, JP and I reluctantly agreed to have the Public Health Nurse visit on an almost daily basis. These “visits” lasted around six months, to the time I went back to work with OCIL. JP was understandably quite angry about the whole thing, but I was petrified. I wanted to just keep my head down and behave myself and not draw any attention to myself. Alison was about three months old when I realised I had PND. It is only this year that I finally sought professional help for this, and although it is hard, I do feel that I am healing at last.

After six months I went back to work and I enjoyed it for a while, until I became frustrated once again by the movement away from the true philosophy of IL. I really thought I was going mad and at every staff meeting I was getting myself into trouble by saying things like “care plans have nothing to do with the philosophy.” Coupled with the PND, I could barely get myself out of bed in the morning. I dreaded work, but couldn’t see a way out. Again, I was torn between my passion for equal rights and my need for a job. I was the PRO, but how could I send out a message about the philosophy of independent living that, because of the medicalisation of services, wasn’t being put into practice? I must say at this stage that OCIL were great employers. It wasn’t their fault, they were working in the face of constant threats of cutbacks, which was very stressful.

In September 2012, a group of disability activists staged a three-day “action” outside Leinster House in retaliation to proposed cutbacks to disability services. Had these cutbacks gone ahead, I would’ve lost my job and PA service at the same time, which in turn would have subjected me to further scrutiny about my parenting abilities from the HSE. Luckily for many leaders like myself across the country, Health Minister James Reilly was forced to back down and reverse the proposed cutbacks. But of course, this was not the end of our woes, and to this day I still hear stories of hours being reduced to allow a disabled person the bare minimum to get up out of bed in the morning and go back to it in the early evening. What kind of life is that for anyone?

The 2012 protests awakened a sense of radicalism in me, and I began to question my own beliefs. Did I truly believe in equality for all disabled people, or only for some of us? Was everybody truly capable of Independent Living? I decided that if I didn’t truly believe that everyone- regardless of the nature or severity of their impairment – were entitled to live as they wished with the support that they needed, that I was not as progressive as I imagined myself to be. I realised that in order to be an activist, I needed to unpack my own internalised oppression, which I think will be a lifetime journey for me. I needed to trust in myself and my own worth, and I needed to be open to learning afresh what independent living meant – for everyone.

In 2014, depression took over and paralysed me. When you’re drowning and gulping in deep water, you can feel yourself sinking; you can feel the gravity sucking you down, but you can’t shout for help – at least, that’s how I felt. In July 2014, I wasn’t sleeping at all between Alison having the normal childhood illnesses like chicken pox, and feeling completely restless and depressed at once. The accumulation of depression and sleepless nights led to an incident where I attempted to take my own life. It remains the most frightening moment of my entire life. I remember abandoning the plan at 6am that morning and going to bed, only to get back up with Alison at 7.30am to get her ready for the childminder and me for work. That’s the lowest I’ve ever been, and touch wood things have never been so bad since.

That day, my colleagues took me aside and told me that they thought it best if I took time off work to sort myself out. I think they had said the words that I’d been so desperate to hear. I just needed a break, a bit of headspace, and to learn how to be kinder to that sad-looking lady who stared back at me from the mirror every morning.

Within a week, I’d decided that I needed to step back from independent living for a while and focus on forging a writing career of sorts. I signed up for a journalism course with Kilroy’s College and was surprised to learn how much I’d missed writing. I decided that I needed to make writing a priority for my mental health. It felt like writing was the only thing that would make me feel like myself again. But in one of the lessons, the instruction was to write about what I knew. What did I know the most about? – Independent Living. I started writing about independent living in a way I’d never felt comfortable doing before. In my blogs, which I would say are entirely my own views and opinions and do not necessarily represent the views of any organisation or people, I questioned the status quo of how services were funded and provided to disabled people in Ireland, and how, since the recession, disabled people had lost so much control over every aspect of their lives.

I had always felt so alone in my frustrations, so it was a huge surprise to see that when I started sharing the blogs, people were agreeing with what I had to say about the realities facing me as a disabled person in Ireland. I started writing about myself, but in no time at all, “I” became “we” and I had the support of a like-minded community I didn’t even know existed. The blogs started to be widely shared and discussed -my humble words that I wrote in the secrecy of my office, enveloped safely in my oversized bathrobe – were being read by activists and allies across the globe. It’s quite humbling and also frightening because I keep forgetting that it’s a global platform – more often than not, I treat it like my own personal diary, which I probably should stop doing… after this post, of course.

A year of blogging, writing novels and articles, and doing a Creative Writing course flew by, and my confidence was growing. I was moving away from Independent Living, and I missed it, but still felt conflicted. Then, just as I had given up hope of contributing anything valuable to the Irish disability movement, my friend and mentor- the guy who had taken a chance on me in 2005 – the great Martin Naughton, passed away in October 2016. I didn’t expect to feel so upset and lost. Nor did I expect to be given an opportunity to show him how much he had meant to me. A week after the funeral, Susan O’Brien from Carmichael House contacted me and asked would I like to get involved in organising an event to commemorate Martin and other activists. I jumped at the chance.

A group of us met in Carmichael House in Dublin to discuss what form this event would take. There, I met the great John Doyle who I’ve written about before, and Ann Marie Flanagan, Dermot Hayes and Shelly Gaynor, who I now regard as one of my closest friends. From day one I felt accepted, although I’d never met any of them before. They were talking about rights and they were so energetic and ambitious, and I yearned to be a part of that. I offered to set up a blog promoting the event and to be trusted to do that was the highest honour. I also offered a piece of drama which my peers encouraged me to perform at the event in the Mansion House in September 2017. These people were pushing me far beyond my comfort zone in every way, and I loved it.

The event became a catalyst for the regrouping of the Independent Living Movement. To my absolute glee, I found that there were people like me who wanted to bring back passion and excitement to the movement. Hearing the stories of more seasoned activists ignited a hunger in me. I was warmly welcomed by my peers and I felt a real sense of community that I never felt before. I felt like I belong. In April 2018 I was co-opted to the Board of what became a new, vibrant organisation – Independent Living Movement Ireland. Had I not found my own writing voice, I might never have been offered that opportunity. I need to stop underestimating the power of this humble little blog!

It’s been a busy time, and over a short period ILMI has progressed from being an organisation that only a few people had heard of, to being one of the main promoters of disability rights in Ireland. During the pandemic, ILMI has actively facilitated the growth of the modern-day Independent Living Movement via Zoom, ensuring that even in these difficult circumstances, the voices of disabled people are heard. Over the last three years, I’ve been afforded the opportunity to write a short dramatic monologue, several articles and blogs, and even to compile a collection of twelve activists’ personal journeys. ILMI have been very good to me, and I am thankful to them for that.

Going forward, I hope to do more writing. Life is too short to regret the words not written. Of course disability is not everything, and I want to write about other things, and I have a few projects and stories in the pipeline that I hope will come to fruition, but I’m not ashamed to be a disability blogger. At least people can take or leave it, and I’m not going around the neighbourhood looking for stray coppers. I want to play a part in making improvements – wider societal improvements that’ll benefit us all – that will lend us a sense of equality and belonging.

Medical Model vs Social Model vs Self

Posted on November 19, 2020 by sarahfitzgerald1984

Last Monday evening I sat on my kitchen chair, biting my lip, unable to stop the tears falling from my eyes. I didn’t want to admit it, but I was exhausted, and in so much pain. I was also frightened by how out of control I felt. How had I got here, at the tender age of thirty-six? The pain was shooting into the back of my knee and every time I stood up, my right leg crumbled beneath me.

You see, I fell in September. Outside, while crushing a plastic bottle so that it’d fit into an overflowing recycling bin. Falls are nothing new to me; I fall so often that I’ve actually learned how to fall in order to protect my head. I normally have pain for ten minutes, tops, and am then able to mosey about my normal business. But since this particular fall, my right leg and I have been at odds. I’ve been exercising, resting it, applying hot water bottles, taking painkillers, going without painkillers. Nothing seems to work.

The truth is, I have had a somewhat troubled relationship with my body. It began with the prescribed physiotherapy as a child which continued into my teens and continued through the stubbornness of my right leg which turned inwards (and still does), tripping me over. I tried in vain to straighten out my leg. I did the physio, I had botox. I resisted using a wheelchair until my early twenties. But I succumbed, and my internalised oppression tells me that this is why I’m suffering now, that this is somehow my own fault.

I’ve been really busy this year, which has left no time for writing. Trying to navigate the emotional ups and downs that come with a global pandemic, with a terrified child, has been exhausting. Then I became involved in various projects with Independent Living Movement Ireland, and suddenly I hadn’t the time to write that I used to. Lately, however, my body has forced me to slow down and reflect, and once again I find myself questioning the same things. Given this pain that I’m currently experiencing, to what extent is disability really located outside of myself? I live by the principles of the social model and one of its architects, the late Michael Oliver, once proclaimed that “disability has nothing to do with the body.” So if I believe that disability is caused by barriers, am I supposed to ignore whatever it is my body’s trying to tell me? To fight for my rightful place in society, do I need to leave my Cerebral Palsy at the door and focus exclusively on political action?

After spending too much time feeling sorry for myself, I began to consider my next move. It doesn’t look as though this pain is shifting anytime soon and I want – need – to start writing again. Maybe even start working again, more than the odd bits I’ve been doing. I transcribed a number of podcasts and compiled a collection of stories about the Independent Living Movement, and now that’s nearing completion, I’m thinking about what to do next. Finish my novel? Do another course? Compile another poetry collection? Whatever I choose to do, I know I’m going to need supports in place in order to do it. I went and got a special chopping board the other day which in theory means that I can now prep food in half the time. I put a grabrail with suction cups on my front door so that I can pull it closed behind me when I’m in the wheelchair. I have a shower chair, and a grabrail on my bed. I also have a Personal Assistant Service (reduced because of Covid) who help me do chores – they can do certain tasks that would take me hours in a matter of minutes! This allows me the energy I’ve needed to compile those stories, which is my biggest achievement this year.

And, eventually, Covid will piss off. But I will still be disabled (in the social model meaning of the word). The aftershocks of the extra money that the government is currently spending, coupled with the deep recession that we are heading into, means that the funding of a true PA service that allows disabled people to have full control over our lives, may once again be threatened, as although the legislation allowing for the provision of Personal Assistance has passed through the Seanad, it hasn’t yet been signed into law. Decisions about what kind of supports are available to us are still being made by medical experts; we are not fully trusted to decide what we feel is best for ourselves.

And while I have to silently contemplate what it means to be a wobbly yummy mummy now approaching my late thirties, I must try harder to remember that my quality of life should not, and will not, be dictated by my impairment. However, it certainly would be enhanced by having access to the correct products and services, chosen and controlled by me. I have so much more to achieve, to do and see, and to give.

I cannot be fixed. But our society sure as hell can. So let’s roll up our sleeves and keep building a better, more inclusive future.

Institutionalised

Posted on March 4, 2020 by sarahfitzgerald1984

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.

Power to change

Posted on February 7, 2020 by sarahfitzgerald1984

If you are reading this on 8 February 2020, it’s election day! Even though the general election in Ireland was only officially called about a month ago, it feels as though the pre-election propaganda has been going on for months and I’m sure, just like me, you are all tired of it, dear reader. (And speaking of being tired of people droning on, many thanks to those of you who read the throwback blogs I’ve been sharing on social media every day since this election was announced. You are truly my stars).

Admittedly, although there have been a few leaders’ and political debates on the telebox over the last few weeks, I haven’t actually sat through a whole debate. However, I have seen and heard small glimpses of them and it was like watching toddlers fighting over who drew that lovely picture. My own daughter will be eight on Sunday and I consider her too old for “he said, she said” sort of nonsense. Micheal Martin and Leo Varadkar have been particularly irritating. Neither of them have done the disability sector any favours over the years. The cutbacks began in Micheal’s time, and Leo has been the proud Leader of a party that once proposed the complete obliteration of the now precious Personal Assistant Service (which was proposed by James Reilly, then Minister for Health, in 2012).

People haven’t forgotten these things, it seems. Things in Ireland are on the cusp of change, with many once-sceptical people declaring their intention to vote for Sinn Féin. A decade of poverty, homelessness and unemployment have driven many people to the edge, with many of us still looking for signs of this economic upturn we’re supposedly in the midst of. I think it’s Orwellian of the government to assure us that things are improving when the cost of living is so high, when over ten thousand people (just three thousand people shy of the population of Tullamore, my home town) are homeless and those who emigrated during the lows of the recession saying that they couldn’t contemplate moving back in the near future to a country offering few prospects of career progression. As a struggling freelance writer, it’s easy for me to empathise with their point of view.

With the all-important vote here now, I’m still undecided who will be my number one. I know it’s so important to use my vote – not to would be a slap in the face to those brave and fearless suffragettes – but looking through history, I’m starting to wonder whether it’s really the way to make real change. Please don’t think that I’m trying to discourage people from using their vote – far from it! – but it was an Orwellian character, the everyman Winston in the dystopian novel 1984, who said –

“If there is hope, it lies in the proles.”

What I mean by this is that we need to be fearless and unflinching in our own convictions, and it is our responsibility to ensure that those who are elected into power follow the wishes of the people. That can only happen if we stand up and use our own voices with confidence and conviction. The people I admire in life are not politicians; they are ordinary people who were not afraid to make a stand. Rosa Parks, an ordinary woman, one day decided that she had had enough of being segregated because of the colour of her skin and initiated the Montgomery bus boycott in 1955. Subsequently, she became a symbol of resistance against racism in the USA, collaborating with Martin Luther King Jr in her pursuit of justice.

Seven years later, Ed Roberts, who had contracted polio as a teenager, fought to be accepted into the University of California, Berkeley. At interview stage, he was famously told “We’ve tried cripples before and it didn’t work.” His subsequent acceptance into the University, along with some other severely impaired students, paved the way for future disabled students to gain entry. Roberts had a revolutionary idea that he was going to recruit and employ his own “attendant” as he wanted a life independent from his mother, Zona. He was going to “hire and fire” this attendant, and instruct them to carry out tasks as per his desires, not just based on what he was perceived to “need” by others. This left Zona free to pursue her own interests and subsequently Ed was not a burden on his mother. The establishment of the Center for Independent Living in 1972 heralded a monumental shift away from the misperception that disabled people could not make their own decisions or manage their own lives. Its establishment led to the philosophy of Independent Living spreading all over the world, even coming to Ireland.

The decision to bring independent living to Ireland did not come from government. No, it came directly from disabled activists themselves, including Martin Naughton, Michael McCabe and Donal Toolan. It was disabled people that took it upon themselves to revolutionise how services were being provided to disabled people at the time. This led to the founding of the first Irish Center for Independent Living in 1992. One of their first major projects, Operation Get Out, saw disabled people moving from unsuitable and outdated institutions into their own homes, where they could make both basic and life-changing decisions with the help of their Personal Assistants.

Over the years, disabled activists in Ireland have continued fighting and pushing for equality. Dermot Walsh is remembered for his work with Dublin Bus, and over the years, many disabled people have joined the campaign for accessible transport. In 2012, when the cutbacks to PA services were so cruelly threatened it was disabled people themselves, protesting for three days and nights outside the Dáil, who reversed that decision. Sadly, we have had no time to pat ourselves on the backs, because an activist’s work is never done. Many young disabled people remain trapped indefinitely in hospitals or unsuitable residential homes. According to research carried out by Independent Living Movement Ireland in 2017, 45% of those lucky 2,200 people in current receipt of PA services only have an average of forty-five minutes’ service a day, and people who have the highest personal care needs are being prioritised.

Can we really expect the government to bring about radical change? Or does the real answer lie closer to home? I have been reminded too often lately that life is short. How do we want to spend it? I understand that fighting and campaigning can be tiring, but believe me, complacency is a far more dangerous prospect.

I remember in 1997, when I was in sixth class in primary school, we had to write a composition about what we thought 2020 might look like. Some of it was bang-on, like having the ability to shop online and being able to pay for things by tapping your credit card. Of course, other suggestions were ludicrous, like having flying cars and being able to travel back and forth through time. But if you had told pre-pubescent me that in 2020, wheelchair users would still have to give notice to travel on public transport, that disabled people would still be trapped in unsuitable nursing homes and that we would not have access to the most basic services that enabled us to live independently, I don’t think I’d have believed it. Because it’s not only unbelievable – it’s scandalous.

The good news is that we can solve these things – us, the proles – by speaking out, saying no and rejecting the status quo.

Governments don’t always bring about the change we need. And they don’t want to reveal the dirty little secret: we, the ordinary people have that power. We’ve had that power all along, the freedom to use our own voices, to speak up on behalf of our peers, to say that the status quo just isn’t good enough any more.

Do you believe that one person can make a difference to the world?

And if so, why can’t that one person be you?

Disability Rights are Human Rights

Posted on January 29, 2020 by sarahfitzgerald1984

So, it’s happened, as many predicted it would – a general election has been called for the 8^thFebruary, 2020. What an underhanded move, don’t you think? To call an election due to take place within three weeks? The short timeframe leaves us all scrambling to make our cases, to highlight pressing issues to election candidates in the hope that somehow, our electorates will improve our quality of life.

However, there is something that’s been bothering me, something that I need to clarify once and for all with you, dear reader. You may have noticed, that as a writer, I am in danger of pigeon-holing myself; after all, the name of this blog is “wobbly yummy mummy”. The keywords I use most, according to the word map located to the right of this blog are “disability”, “independent living” and “equality”. When I established this blog six years ago, I intended it to become a platform for a diverse range of subjects, not just disability activism. Yet, I don’t think of it as time wasted, nor do I worry whether it will impact on my future writing career. I’m proud of this blog, and what it represents. Above all, my writing serves as a reminder to all who read it that –

Disability Rights Are Human Rights

This reminder comes as the nation ramps up to challenge those who think they hold the solution to the many problems facing people in this country right now. Often, when organisations purporting to represent the needs of disabled people deliver their manifestoes to the vote-seeking candidates, they are told by the election hopefuls that they understand the importance of services for disabled people, that they want to protect those who are “vulnerable” within our society. That said, few candidates understand that it’s not our impairments that make us vulnerable, but rather the lack of access, services and respect that we as disabled people face on a daily basis.

The reality is that disabled people’s lives are affected in deeper ways by the government’s unwillingness to treat us as equals. It has been recently reported that Ireland is the worst country in Europe to have an impairment or disability, and this doesn’t surprise me in the slightest. One of the biggest challenges is that disabled people are still treated as “patients”, people who, in the words of prominent activist, the late Martin Naughton “are to be cared for rather than cared about.” We have to ask ourselves whether things can ever drastically improve for disabled people in Ireland as long as the HSE is the principal funder of disability services. Does this mean that disability will always be seen as a medical issue rather than a form of social oppression, like racism? Which, of course, is exactly what it is.

Progress

It would be amiss of me to imply that there have been no glimmers of hope in the last three years. On 7 March, 2018, Ireland finally ratified the United Nations Convention on the Rights of People with Disabilities. On November 19, 2019, a motion was brought to the Seanad by Donegal TD Thomas Pringle in collaboration with NUI Galway and Independent Living Movement Ireland (ILMI) to legislate for a Personal Assistant Service. This has been a monumental step not only towards securing a service for disabled people often described as “my arms and my legs” but bringing about a change in the overall narrative of disability. It was the first time in a long time that I observed the language that was used being focused on a rights-based approach rather than the usual “vulnerable” narrative. And although the safety of the future of personal assistant services is still not guaranteed, I feel optimistic about the future of disabled people right now.

But – and there’s always a but – we cannot and should not rely on elected representatives to speak on our behalf. Historically, disabled people have had to suffer the humiliation of not having their voices heard. This starts on a seemingly innocuous level, in our everyday lives, when our family members or personal assistants are spoken to instead of us being spoken to directly. This is referred to as the “does he take sugar” syndrome, and evolves into a warped reality where the views of disabled people are only taken seriously when they are endorsed by a “disability organisation”. I know that my little blog does not have the reach that I would like it to have, and while I would never claim to be the expert on disability issues, I know how exclusion, lack of access and discrimination, both direct and indirect, impacts on my everyday life.

My point is – we need to trust ourselves. We need to truly believe that we as disabled people, and we alone, know what’s best for us. If we don’t believe this – and it’s shocking how many disabled people doubt themselves because of internalised oppression – then the big decisions will be made for us. Where we live, who assists us, our dreams and the nitty-gritty of our own lives will never be in our hands.

So to reiterate: The issues facing the population as a whole also face disabled people.

For example, disabled people are aversely affected by the housing crisis. Many adult disabled people, just like non-disabled people, are still stuck living at home with their parents. Others are living in hospitals or nursing homes for the elderly because there is no accessible housing available or because they don’t have access to Personal Assistant Services. There are no figures available to show how many of the 10,000 people who are currently homeless are disabled people, but logically people with a varied range of impairments would be logistically unable to access certain hostels and emergency accommodation.

The rising costs of living means that disabled people in Ireland (like many others) are forced to eat nutritionally deficient food such as breakfast cereal, pasta or packaged soup, because they must save money for heating and other bills, or because they lack the assistance needed to prepare a more substantial meal. And the free travel pass, which was intended to reduce isolation among disabled people from their communities, is useless when buses are inaccessible and both urban and rural train stations are unmanned.

Should I have the chance to meet any of the election hopefuls face-to-face, I shall be reminding them that disabled people are demanding their human rights, that the government urgently needs to invest in all of our lives, that we should have access to the same services and opportunities as the “non-disabled” population and, above all, that we have been very patient. We have watched the deterioration of vital services and yet the outcry has been barely audible. We have tolerated cutbacks, the denial of basic rights, the compartmentalisation of our needs into “special needs” for far too long.

We refuse to do it any longer.

We refuse to be spoken for any longer.

Henceforth, we will be collectively using our voices and demanding our human rights.

Personal Assistance Should Be a Right

Posted on January 3, 2020 by sarahfitzgerald1984

(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

Remembering John Doyle

Posted on November 25, 2019 by sarahfitzgerald1984

It was October 13, 2016. Martin Naughton had just died, and the entire disability community was in mourning. Martin’s death was at a time when I had made a monumental decision, for the thousandth time. I was ready to kiss the world of disability activism goodbye and become a full-time freelance writer. I had spent too long caring about the degeneration of the philosophy of independent living. I had blogged about it, spoken about it and still I felt empty inside, as if the wonderful, magical world of Independent Living only existed in fairy tales.

A week later, I received an email from the wonderful Susan O’Brien in Carmichael House Centre for Independent Living (or Independent Living Movement Ireland as it is now known) asking me if I would be interested, along with other activists, in organising an event to pay tribute to Martin, who was considered to be the Irish Father of the Independent Living Movement. I accepted Sue’s kind invitation, and a week later found myself sitting like an imposter among some of the greatest activists in Ireland: Dermot Hayes, Ann Marie Flanagan, Mick Nestor and the legendary Shelly Gaynor (Shelly had been to the forefront of many protests against cutbacks to Personal Assistant Services). There was another man there who seemed oddly familiar: even though I’d never met him before in my life, I felt like I’d known him a long time. His name was John.

As the group discussed plans for the memorial event, John’s enthusiasm struck me and inspired me to volunteer to manage the social media and create a blog for the event. I felt more confident in my own voice and started to open up and share my ideas. In December 2016, I started talking to John over Facebook about how disillusioned I’d become with Independent Living in Ireland and how I felt that things had become overmedicalised.

“We are the experts in our own lives,” he said. “The HSE supports the medical model. They will never understand the true meaning of Independent Living or rights.” I offered the idea that we could educate those within the HSE, but John was having none of it. Over the following weeks we fought, we clashed, we agreed on some points. John said that it was important to have those conversations, to make things clearer in my own head.

At this point, there was talk of me joining the board of CIL Carmichael House, in early 2017. I was having serious doubts about it and John, who was concerned about me, asked me why.

“John, I’m not experienced enough to go onto any board, let alone onto a board of an organisation I’ve respected for years. Sure, I can talk the talk but I haven’t done anything tangibly constructive for the movement the way the others have. I don’t know what I’m doing.”

John wrote back: “Nobody knows what they’re doing, not at first anyway. Martin spent his life taking risks, and look how that paid off! You have such passion. Let that drive you.”

But I still didn’t feel worthy so I shied away from the Board. Determined to give something back, however, I instead threw myself into the memorial event. As a group, we named ourselves “By Us With Us”. In addition to managing the social media for the event, I wrote and consequently performed a dramatic monologue, which was close to the bone as it explored the damage caused by internalised oppression when Alison was born.

The months flew by. Before I knew it, it was May 2017 and I had not seen John since February. Nor had I heard much from him. In August, I was devastated to learn that John had lung cancer. My mum had that too. Generally, the prognosis for lung cancer is not good. Naturally, John pulled away from the organisation of the event. Before this, he had been guiding me in managing the blog and Facebook page. His silence was eerie.

Not wanting to bother John, I asked other friends how he was doing. Apparently he was trying to put a brave face on it but he was terrified. I continued working with By Us With Us and getting to know Shelly. Soon, I would not be able to imagine my life without her as a friend, and she remains a massive part of my life.

Finally, the big event came on 23^rd September 2017, and with it came my dramatic debut. It was so raw. The pain was supposed to be that of my character’s, but it was obviously I who was crying on the stage, not “Rachel”. The performed drained me and much to my disappointment, I had no choice but to miss the rest of the event and take it easy. At nine o’clock that evening, my phone pinged: a message from John. All it said was “I heard you were brilliant, well done Sarah”.

That was the last I ever heard from him.

John died on the night of 26^th November. My heart ached, and I couldn’t say why. I barely knew the man; realistically I only met him face-to-face a handful of times. I cried when I heard. The thought of his children facing the rest of their lives without their dad, the loss within a disability community that had lost so many people, including Eugene Callan, four days after the memorial event.

For some reason, John’s death angered me. I began to think of all the disabled people I knew, young and old, who were grappling with the same shite that disabled people grappled with thirty years ago. How could there be so little progress between my generation and John’s? As if possessed by some intangible demon, I sat at the keyboard and typed blindly, my own salty tears stinging my eyes. I could hear John saying (though I can’t remember whether he actually said this, or if he implied it), that from the cradle to the grave, all disabled people seem to do is fight.

I didn’t dedicate the poem to John openly at the time. I felt I had no right to. I barely knew the man. Others had a historical connection to him that I didn’t have. So I shared it, but didn’t mention John. Now, I dedicate this poem to John, two years after his passing.

In 2018 I was asked if I would like to join the Board of Independent Living Movement Ireland. Again I said, “Others have more experience than me.” Shelly’s response was the exact same as John’s had been and I felt that he was there, dragging me back to the world of activism which frustrates me and makes my soul sing in equal measure.

As a movement, we have made fantastic progress. Last week saw the passing of a motion in the Seanad that represented independent living as a fundamental human right for disabled people rather than a service that is granted on a whim by the powers that be within the HSE. This was always John’s dream, and now it’s up to all of us to make it a reality – to continue to fight, fight, fight.

Rest in peace friend (and thanks so much for the poetic inspiration – one of my favourite poems yet).

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

Posted on November 18, 2019 by sarahfitzgerald1984

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 (3^rd 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

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