Remembering the Father and Mother of the Independent Living Movement

Posted on March 6, 2025 by sarahfitzgerald1984

Judy Heumann and Ed Roberts are both recognised as prominent figures in the international Independent Living Movement. It is remarkable to think that two complete strangers from opposite ends of the United States would come together to spearhead what would evolve into an International Disability Rights Movement. This month, as we mark the anniversaries of their passings (Judy – 4 March 2022; Ed – 14 March 1995), I find myself reflecting on how the actions of these two individuals led to the formation of an army (in modern terms, a collective), that fought for equal rights for disabled people worldwide.

When I first started working with Offaly Centre for Independent Living in 2008, my first assignment was to research and understand the origins of the Independent Living Movement. I knew about Personal Assistance, but nothing about the existence of a civil rights movement for disabled people. I also knew about Rosa Parks’ refusal to give up her seat on the bus, but I’d never heard about the feisty New Yorker, Judy Heumann, who led a demonstration shutting down the streets of New York, before orchestrating what would become known as the “504 sit-in”. Nor had I heard of a young Californian called Ed Roberts who conquered his self-pity and established the first Center for Independent Living, after setting up an informal team of assistants that helped him live independently while he studied at the University of California in Berkeley.

Ed and Judy (I refer to them by their first names as I think of them as comrades or allies, not faraway idols) are often referred to as the Father and Mother of the Independent Living Movement. Both had polio, but Ed had acquired polio later in life, at the age of fourteen, and so he perceived himself differently to how Judy did – his journey to self – acceptance saw him transform from “helpless cripple” into a “star”, whereas Judy says in her autobiography, Being Heumann, that she always believed that she had a right to exist on an equal basis with others. Ed was also more significantly impaired than Judy, and one of the obstacles to his attending university was finding somewhere that could accommodate the 800lb lung he slept in at night. Ed was the first wheelchair user to attend the University of California and eventually, he was offered a wing of Cowell Hospital, the on-campus hospital, which he accepted with the caveat that he could treat it as a dorm, not a medical facility, with the same freedoms that non-disabled students enjoyed.

The establishment of the first Center for Independent Living in 1972, led by Ed and a group of disabled University of California students who dubbed themselves the Rolling Quads, marked the beginning of a battle for disabled people to have their civil rights recognised. By sharing their experiences and witnessing the nitty-gritty of each other’s lives, they formed a strong bond among themselves based on a mutual desire to enjoy a better quality of life, as equal citizens in America. Progress proved slow. In 1973, the Rehabilitation Act was passed, but Section 504 – which rendered it illegal for state-funded services to discriminate against persons on the basis of disability – was vetoed. Age-old excuses of cost of adaptations were trotted out as valid reasons to not sign the regulations, so passing the Act was merely paying lip service to equality for disabled people.

By 1977, a frustrated Judy had had enough. In her eyes, and the eyes of her supporters and fellow activists, sitting around waiting for something drastic to happen was time wasted. Using her experience of successfully suing the State of New York for denying her a teaching licence as she was perceived to be a fire hazard, Judy and what was referred to at the time as an “army of the handicapped” gained access to and refused to leave the offices of Health, Welfare and Education in San Francisco. Judy was highly organised, and soon various committees had been established to organise food and bedding, as well as entertainment. Nonetheless, the physical impact of sleeping on mattresses on the floor was roughly felt by many protestors, many of whom developed bedsores. Despite this, it seemed that the protestors in San Francisco knew that there was too much at stake to back down.

In the later stages of the sit-in, Evan White, a news reporter, had amassed an impressive amount of footage of the protests. He described his jubilance at having the honour of sitting in during “meetings of strategy” with disabled protestors, as Judy led long meetings with fellow protestors every evening that often lasted into the wee morning hours. Everyone was given a say, and a job to do. By a stroke of luck, a nationwide television strike enabled Evan’s recorded reports to become front and centre of the country’s viewing schedule. This worried Califano more than the sit-ins themselves; it had the potential to damage his public image as a politician. On the twenty-fourth day of the sit-in, Section 504 was signed, a feat that was achieved by the will and determination of a strong collective of disabled people. (If you want to find out more about this sit-in, I recommend watching the award-winning Crip Camp on Netflix).

Indeed, if we as activists can learn anything from Ed and Judy, it is that disabled people working together is the best way to attain our human rights. Having experienced discrimination and exclusion firsthand, we know best what we need. Although our lives are better than they were fifty years ago, we still battle to hold onto those hard-won rights that activists such as Ed and Judy, and here in Ireland, that Martin Naughton, Michael McCabe, Dermot Walsh, Ursula Hegarty and so many others fought for us to have. We must also come to accept that we work best as a collective. Nothing will change if we wallow in self-pity. Instead, we must use our experiences to make a better, more inclusive future for all of us. We owe it to Judy and Ed, and we owe it to ourselves, to never settle for a lesser life than the one we aspire to.

Tuesday Thoughts: Empty Batteries

Posted on March 26, 2024 by sarahfitzgerald1984

(written Wednesday, 20 March 2024)

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

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

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

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

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

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

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

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

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

October, I sheepishly admitted.

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

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

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

Summer in Dublin – Tuesday Thoughts 3

Posted on June 20, 2023 by sarahfitzgerald1984

(I can hear some people humming Bagtelle from here!)

I have always loved my independence. So much so, that when I went to Trinity in 2003, I made a decision to try and become self-sufficient. With two little sisters coming up behind me, I just didn’t think it was fair to go home for the summer after a year in uni and scrounge off my parents. Besides who, at the age of nineteen, wants to go back to telling their parents their every move after enjoying so much freedom during the academic year? I certainly didn’t.

Before I sat my first year exams, I gathered up the courage to ask the Trinity Student Disability Service for some ideas. To be honest, I thought they’d tell me that it wasn’t in their remit, but they seemed impressed by my determination to be truly independent, and offered me a job as Access Auditor for the summer of 2004. The Trinity Accommodation office also offered me a room out in Rathmines, within their complex on the Dartry Road. I’d never been there before. Most of the time, whenever I returned to Tullamore by train for the weekend, I would be escorted to Heuston by my lovely Personal Assistant Mary, collected from right outside my rooms in her little black Polo. Suddenly, I had to navigate Luases and buses to get from Rathmines into work in Trinity.

Working as an Access Auditor was bloody exhausting. My friend Ciara and I worked together on it, and we got a one-day crash course on what we were expected to do. And man, it was detailed. How heavy were the doors? What height were the doorhandles? Were there any plug sockets, Braille, loop systems? What were our recommendations? The level of detail expected was extraordinary, and yet it only took us a month to go around to all the different faculties in Trinity trying to gather the information. That said, we were working seven-hour days, which was quite the culture shock to an English Studies student who was only expected to attend twelve one-hour lectures/tutorials a week! It gave me the kick up the arse I needed to motivate myself to study harder in the subsequent years. Indeed, my university experience is part of the reason why I can now work consistently and independently.

I liked living in Rathmines, though. It isn’t quite a town, nor does it feel like part of the city. I remember how God-awful the footpaths were going from Trinity Halls down to Tesco. The 14A, which stopped directly outside Trinity Hall, used to bring me to work into the city every morning, but it wasn’t always reliable timewise (surprise!), nor was it wheelchair accessible, which meant I had to walk – thankfully, only a short distance (I didn’t even need a rollator in those days). I’d always aim to be at the bus stop for the 9.05, and it almost invariably drove off while I was on the other side of the road, trying to cross in the height of rush-hour traffic. Thankfully, by the time I lived out there in the summer of 2006, I had an electric wheelchair, meaning that I could whizz to the Milltown Luas Stop, then fly from the St Stephen’s Green stop down to Trinity, where I was employed again for the summer, this time uploading the results of the 2004 Access Audit up onto the Disability Services website.

Trinity is different in the summer than during the academic year. During term time, you’re always bound to bump into people you know, but the majority of my friends usually went home, or travelling, for the summer. The lines of excited Americans waiting to see the Book of Kells grows threefold in the summer months. But even with the sudden influx of tourists, I always thought it was a beautiful place. When I was living in Botany Bay, which is located right in the heart of the campus, circling the tennis court, I awakened every morning to the poc-poc-poc of tennis balls. We were privileged to have a cleaning lady working in our block, who helped me to keep on top of the housework and to help with laundry (unless both exits of the Buttery Restaurant were open, the laundry facilities were not wheelchair accessible.) I was quite embarrassed by this offer of help (who wants the cleaning lady looking at their undies?!) but after nearly falling down the steps with a sack full of laundry, I had to concede that I needed the assistance.

Walking through the campus on a sultry summer’s evening is an experience that will always remain ingrained in my memory. I’d head out through New Square across to the rugby pitch, walking slowly as I watched people picnicking on the green in spite of the “Keep off the grass” signs, people congregating around the campus pub, affectionately known as the Pav (which, with its humungous flight of steps, was not accessible in my time) with plastic glasses in their hands. Around eight o’clock, the drone of the city surrounding us would subdue to a gentle hum, while the midges appeared and the orange sun hung low beneath the campanile in Front Square. Even then, I’d a sense that I wouldn’t appreciate those days the way I do now.

Sundays was treat day, and John Paul and I would walk around Saint Stephen’s Green park, stopping in Lemon on Dawson St for breakfast and having dinner in Café en Seine on the way back to Trinity, or the Luas to Rathmines. Poet extraordinaire, Professor Brendan Kennelly, often had brunch in Lemon on Sunday mornings, and he would always come over to us with a wide smile, a warm handshake and a “It’s so great to see you.” Looking back now, I thought it was the most normal thing in the world but now, I can’t believe I took any of it for granted. Now that Professor Kennelly has passed away, I’m so glad to have those memories.

However, one particular summer changed my life: the summer of 2005. Trinity couldn’t afford to take me on for work, and so my Personal Assistant introduced me to the Father of the Irish Independent Living Movement: Mr. Martin Naughton. I met him in Chief O’Neill’s in Smithfield, as many others had on separate occasions before. He gave me a summer job, and before I knew it, I was in the gatehouse of Carmichael House meeting other disabled activists, including Donal Toolan and Hubert McCormack (sadly all three men have left this world, RIP). That summer, I learned that it was okay to ask for help, and that being independent did not mean that I had to be self-sufficient. I also learned how to use the Luas, which was only in existence for a year at that stage. I remember telling Mum about it, and her shrieking down the phone at me: “Stay away from the Luas – you’ll be killed!” (In the early days of the Luas, there were lots of near-misses/accidents). Deliberately disregarding her instructions, I caught the Luas from Abbey Street twice a week and disembarked in Smithfield, which back in 2005, was quite a rough area. In saying that, I was never attacked or harassed, and the dishevelled men would raise their cans to me as I walked past on those sunny July mornings. That summer, I forged what has so far transpired to be a lifelong bond with the Independent Living Movement.

Those days of wandering around, coming and going as I pleased, now feel as though they happened to someone else. Just thinking about the amount of work I did during those summers make me feel sleepy. But I’m grateful for what I learned: how to budget, how to find work, how to look after myself. I bring these lessons into my life every day. It just doesn’t feel as exciting anymore.

And Dublin is different to me now that I have a child of my own. Once, the city was a treasure trove to be explored; now, I can smell the stagnant River Liffey, see the throngs of people walking on autopilot down O’Connell Street. I can see the destruction of addiction, the potential to be targeted by thieves, the dangers. But looking at the past through rose-coloured glasses, I see adventure, hope, promise. And I’m thankful for my Living in Dublin adventure, which prepared me for living in the real world.

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.

Wobbly Yummy Mummy

Parenting, Disability Activism and everything in between!

Category Archives: independent living