These blogs are categorised both by subject and month. If you have any trouble navigating it, please do not hesitate to contact me
So, I just thought I would give you all a little update into how the writing is going. Well, at this exact moment in time I, like so many of you, am fit to melt into a puddle, which isn’t helping. Before this week, however, I was plodding along until once again, I found myself disappearing into a cul-de-sac. Interestingly, I know in my head where this is going – finally! – but it’s not translating to paper as well as I’d like. This is a common predicament for writers, not unique to me. After hacking away for a while, and adding words purely to beef up the word count, I decided to take a break. I gave myself permission to step away, justifying my decision with advice from writer Sam Blake (The lovely Vanessa Fox O’Loughlin) that sometimes you need to allow your subconscious the space to put elements of the story together. I’ve spent the last week or so doing just that.
A number of things have rubbed me since reading in Cork nearly a month ago. I began thinking about the advice my brilliant mentor David Butler gave me during our last session. “You’re really being too hard on Rachel,” he said, which annoyed me a bit, because I think Rachel deserves it. My protagonist can be lazy, selfish and quite frankly, a bit manipulative. She uses events of the past to justify her shitty behaviour towards those around her. Some days she annoys me so much that I want to shake her. Why doesn’t she just try a bit harder?
The funny thing is, David is absolutely right, of course. Everyone in my writing group loves Rachel and is rooting for her to overcome her demons. They think she’s feisty and assertive in all the right ways, and they seem to look forward to the next instalment, which is flattering. Rachel even got a few laughs at the West Cork Literary Festival, which was such a good feeling. My daughter didn’t go to the reading, but she read the extract in the back of the car afterwards. Her eagle-eye spotted every detail; she is an avid reader who I’m sure can memorise many of Jacqueline Wilson’s or David Walliams’ books. After she finished, my daughter asked me “Mammy, why does everyone hate Rachel?”
“Did you not hear what her boss said to her? She’s been missing appointments, coming in late and hungover. She’s not a reliable employee.”
“Yes, but she seems to care about her clients. I know she’s not perfect, but I can see where she is coming from too. People need to back off her.”
My eyes narrowed. “Hmmm. Have you been talking to David?”
After taking a break for a week, I went back and read over the story again. I could see what David and Alison were saying; I am quite hard on Rachel, and she deserves some happiness. Because Rachel and I are similar in many ways (the Cerebral Palsy, the struggle to fit in at work, and hating being called “inspirational”), I’ve been trying to detach myself from her a bit. I did a one-day course with Michéle Forbes in April on creating characters, and now I understand why all my characters act the way they do. Including my antagonist, Sister Anthony.
For years, I’ve said that I base Sister Anthony not on a person but rather an attitude that I as a disabled person have encountered all my life. That voice that tells us as disabled people that we are less than (I’ve written about internalised oppression before), that in order to be accepted, we need to change and conform. These ingrained beliefs – personified in my story through Sister Anthony – can be difficult to challenge unless we question them, where they come from, and how damaging it can be to believe them.
I know you probably don’t know what I’m on about, so let me explain. (Oh, please reader, be kind; this is so hard to write and admit to). The reality of aging with impairment is something that is seldom talked about. I was lucky to have availed of services throughout my childhood – physio-, speech- and occupational therapy. However, in Ireland, once you turn eighteen, access to these services becomes restricted, if you’re lucky enough to have access in the first place. I’ve always been lucky in accessing services, but only because I’ve pushed for them.
In recent years, I’ve experienced aches and pains beyond anything I ever had in my childhood or teenage years. I still do my physio and exercise, but my body is starting to fight back against some of the things that I used to regard as normal. For example, I used to hoover and mop on my knees, because that way I didn’t need to worry about balance and coordination. I love ironing – my mother taught me the importance of perfectly ironed clothes – but now an ironing session might warrant an hour’s rest afterwards. I’m not giving up. I’ve always been independent and that’s not going to change. But I have to admit that sometimes I worry that this decision will have unsavoury consequences.
And on Friday, I had a very upsetting moment of realisation. Upsetting to the point where I cried – a lot. Yes, I am like Rachel – stubborn, imperfect, obstinate and determined. But I have also become my own Sister Anthony. And Anthony is not a pleasant person. She’s pushy, and often extremely cruel. Her expectations of Rachel are unrealistic and the by-product of living in an ableist society, one where the medical model dictates that self-improvement and conformity are key to being accepted as an equal.
I’m glad I recognise this in myself, because it means that I can heal. I need to give myself, and Rachel, a bit of a break. Heaven knows we’ve both put up with enough to last us a lifetime, and for the first time since I started working on this story seven years ago, I’m starting to think that we both deserve a happy ending. And for Rachel, this will just be a matter of writing a couple of thousand words. Mine will only come with an acceptance of my limitations, and this will take a lot more work. But I will get there, and hopefully finish this godforsaken novel in the process.
(Not today, though. It’s far too hot!)
It was Friday, 16 July 2021. We were temporarily residing in a first-floor apartment in Tullamore while waiting for some much-needed renovations to be completed in our house. I remember that it was the middle of the heatwave, because I was watching Alison, our daughter, playing outside from the apartment window. Suddenly, my phone rang. I saw Damien Walshe’s name, the CEO of Independent Living Movement Ireland, flashing on the screen. My mind was cast back to the occasions where I’d applied for jobs with ILMI and he had the unenviable duty of ringing me, telling me that I hadn’t been successful.
So when I answered, and Damien asked, “Can you talk?” I’d already played out the spiel in my head: Don’t lose hope. Keep writing. You are good at what you do. In fact, I was so busy steeling myself against disappointment that I almost missed what he was actually saying to me.
“Did you just say that I’ve been chosen?”
“Yes! Well done, Sarah!”
I was flabbergasted. “Are you sure it’s not a mistake?”
This went on for quite some time, much to Damien’s exasperation I’m sure, but later that evening, an email from the gorgeous Nidhi confirmed the good news: I was an official Play It Forward fellow. More significantly in my head, I was a writer who had been awarded a bursary, a real bursary.
I’m sure many artists who apply for bursaries feel the same way I do. It wasn’t about financial gain for me (although I’ve never been known to refuse a few quid). Writers, like other artists, don’t pursue this kind of work because they have visions of rolling around in mountains of cash like J.K. Rowling. In terms of money, I don’t earn enough to keep food on the table or to afford anything remotely luxurious. Most people write alongside their day jobs.
What being awarded a place on the inaugural “Play It Forward” programme did for me was it validated what I do on a daily basis. I’ve always been reluctant to use the word “writer” to describe myself. It feels a bit arrogant to be putting myself in the same category as the likes of Marian Keyes and Margaret Atwood. Yet, when I was awarded the place on the programme, suddenly I felt that I had permission to identify as a writer.
It was strange, because in reality, my creative process has remained largely the same. I still endeavour to spend three to four hours at my laptop a day, churning out words, as I have done for the last seven years. The difference was now there was accountability. Suddenly there was no time to sit around daydreaming, because my mentor David Butler would be expecting to see approximately ten thousand words of my novel every couple of months. This forced me to pay closer attention to the words I put on the page, meaning that I have to produce the best quality work I can. Being on the Programme allowed me to write a small piece for the prestigious literary magazine, The Stinging Fly. It also enabled me to avail of a number of one-day online courses, as well as two longer ones: “Novel Writing” facilitated by David Butler and “The Confidence Booster” by Anne Tannam. I learned so much on these courses, and in fact we all enjoyed the Novel Writing one so much that when David’s teaching ended, we all came together and so the group continues to meet to discuss and critique each other’s work every two weeks under our new name “People’s Republic of Writing.”
Perhaps the most significant part of being a Play It Forward fellow was having the opportunity to read our works-in-progress at the West Cork Literary Festival. I remember when I was sent an overview of the programme last July and saw that we would be reading to a real-life audience, my first thought was “Okay Sarah, you have a year to try and think of an excuse to get out of this.” I’d never been to the Festival, but I’ve followed it on social media since I first started writing and thought of it as somewhere for established writers. Real writers. You know, writers who actually know what they’re doing. Published writers. Before I knew it, the day was upon me and instead of making excuses, I found myself in the car beside my husband, navigating our way to the beautiful Bantry.
We’d been holidaying in Trabolgan in East Cork, but it was still a two-hour drive. When we arrived in the hotel on Wednesday evening, we were both fit to collapse into bed. I was unpacking my bag when a white envelope caught my eye. It was sitting on the table and it had my name on it. Inside was a bookmark, a lanyard with “artist” written on it, and a copy of the programme for the week. My photograph was in it, alongside my other Play It Forward fellows, Gonchigkhand Byambaa, Neo Gilson, Sara Chudzik and Majed Mujed. There were also details of other events featuring authors including Lucy Caldwell, Louise O’Neill, E.R. Murray and Marianne Lee. The name dropping could go on and on. I only wished I could’ve stayed for the week!
Finally, on Thursday 14 July 2022, almost a year to the day that I was offered my place on the Play It Forward programme, I was preparing to introduce “Rachel” to the world. Gráinne from Skein Press told me not to be nervous, that I was reading to friends. Usually I would have someone read on my behalf because of my speech impairment, but that wasn’t going to be accepted as an excuse to weasel out of reading! The words were behind me on the screen. As I read, I became Rachel. People laughed, which was such a relief. It was such a pleasure to hear my fellow writers read about their experiences of marginalisation and belonging. Stories of cultures combining, memories of home and family members, themes of difference and trying to fit in. I was in awe of the talent of my fellow writers, and I hope to see more of their work in the future.
In five months, the Play It Forward Programme will come to an end, but I will always be grateful for this wonderful journey. I would like to thank all at Skein Press, particularly Nidhi, Mahito, Grainne and Fionnuala; the Stinging Fly, particularly Declan Meade; my outstanding mentor David Butler; the Irish Writer’s Centre; Independent Living Movement Ireland and the West Cork Literary Festival for affording me this unique opportunity. I will never forget it as long as I live.
Ah, haven’t you all missed me blogging about the same thing over and over again? Once again, I’m writing about an issue close to my heart: the need for Personal Assistance to be recognised as a legal right in Ireland.
Independent Living Movement Ireland (ILMI) have relaunched their #PASNow or #PersonalAssistanceServiceNow campaign. The aim of this campaign is to raise awareness of the important role the Personal Assistance Service (PAS) plays in the lives of disabled people across the country.
So what’s the story behind this campaign?
In 2018, Ireland became the last European country to ratify the United Nations Convention on the Rights of People With Disabilities (UNCPRD). According to Article 19 of the UNCRPD, disabled people should have access to a range of services to enable them to live independently, including home help and Personal Assistance.
Currently, even with the ratification of the UNCPRD, Personal Assistance is not recognised as a right in Ireland. In fact, the Personal Assistance Service was launched by the Center for Independent Living in 1992 as a pilot scheme, and it remains a pilot scheme to this day. This means that funding for this scheme could be relinquished at any time, leaving thousands of disabled people across the country without a service that makes a meaningful difference in their lives.
Surely that couldn’t happen? Don’t be so sure. In 2012, a group of disabled people were forced to take action when Health Minister James Reilly announced sweeping cutbacks of €12million which would have eradicated the Personal Assistant Service. Although these cuts were reversed, the reality is that 44% of Leaders (PAS users) only receive services for the equivalent of 45 minutes a day (Source: Pauline Conroy, Disability in Ireland, 2018). Could you squeeze your life into less than five hours a week? Furthermore, there are no guarantees that following the financial devastation that COVID-19 has caused, that funding for the PAS is safe into the future.
Without the right to a PAS, many disabled people are living mediocre lives, not reaching their true potential. Many young people across the country are dependent on aging parents to cater for their personal care needs. Others (it is estimated to be 1,300 people at least) are living in unsuitable nursing or residential homes, with little control over what time they get up, when and how they are showered and dressed, or who carries out these tasks for them (as highlighted in a HSE report entitled Wasted Lives: Time for a better future for younger people in Nursing Homes). Julia Thurmann was one such lady who was trapped in a nursing home for over ten years, when all she needed to live independently was accessible housing and personal assistance. Her story is not an isolated one. This is not acceptable in twenty-first century Ireland.
So what exactly are disabled people looking for?
Independent Living Movement Ireland has divided what disabled people are looking for into five headings:
- Define: The PAS needs to be defined as a service that offers choice, dignity and respect. In order to do this, funding for this service needs to be ring-fenced and separated from home help services.
- Legislate: Make PAS a legal right in Ireland so that those who are wrongfully denied this service have recourse. That way, Ireland will be compliant with Article 19 of the UNCRPD.
- Invest: There has been no substantial investment into the PAS since 2008, despite a growing demand for the service. ILMI has asked for the PAS budget to be increased by €12.5m annually. Woah, that’s a lot, you say. Well yes, but it’s just as costly, if not more so, to have disabled people living in unsuitable residential accommodation. Or to have a family member denied the chance of pursuing a career because they have assumed the role of unpaid carer. This creates long term dependence on the State and puts pressure on the HSE over something that is not a healthcare issue but rather a human rights one.
- Standardise: Anecdotally, disabled people know that it can be more difficult to access PAS in some areas than in others. Introducing a single standard assessment of need across all HSE CHOs (Community Health Organisations) would make the process fairer with the removal of unnecessary bureaucratic barriers.
- Promote: A PA is not a carer, nor does he/she know what is best for the leader. The Leader should have full control over the service. This message must be strong in order to shatter the assumption that disabled people are incapable of knowing what’s best for them. Regardless of one’s impairment, living independently is a basic human right.
Disabled people should not be reduced to downplaying their abilities in order to access services. They are not objects of care but equal citizens who, with the right supports in place, have so much to contribute to our communities and the economy.
So, how can I help?
There are so many ways to get involved in the #PASNow Campaign. For further details, please email firstname.lastname@example.org. Showing solidarity sends a powerful message that every single one of us deserves to have choice and control over our own lives.
I’ve grown up a bit since starting this blog. A few short years ago, when I wrote a blog for mum’s birthday, I mentioned my disappointment in failing to secure Adele tickets. I knew every word to her new album 25. But oh, how priorities change! Although my daughter is almost ten, I’m not as time-rich as I’d envisioned. I still have to parent, albeit it has become easier physically (though trickier emotionally – the joys of parenting a preteen, what with monitoring screen-time and conversations that turn into mini-debates). I’ve been so busy that I haven’t even had time to listen to Adele’s new album, but I’ve heard “Easy on Me” and it’s definitely a message that I want to scream at the top of my lungs.
World, go easy on me. No, that’s not what I want to say. I want to say: Sarah, go easy on yourself.
Almost twenty-two months. It’s been almost twenty-two months since the “old normal” disappeared overnight. The end of February will mark two years since Covid19 reached us here in Ireland. None of us could have imagined how much would change between then and now.
We were resilient then. We were prepared to do whatever we had to in order to curb the spread of this new virus. We stayed at home and worked in our pyjamas. We homeschooled the kids, against all of our wills. This was only going to be for two weeks, to flatten the curve, we were told (but nobody believed this). Our children saw out the end of the 2019/2020 school year at the kitchen table. On the day that the first lockdown was announced, our daughter had just brought back into school her consent form for her school tour, an indication that none of us really foresaw what was about to happen. On Sunday 8th March 2020, I stood in the Church at a pre-First Communion mass with a group of parent friends, speculating about this virus that we assumed was millions of miles away.
Four days later, Leo plunged us into lockdown, and the rest is history.
You know all this. I just wonder is anyone else where I am now. I feel exhausted, absolutely worn out. Like my daughter who is waiting in anticipation of Santa, I’ve been a good girl. I’ve done everything I’ve been asked. I’ve barely been anywhere in two years. Being captive in my own house, I willingly got involved in many activist groups (namely with ILMI, which I loved), and I gathered a collection of activists’ stories, which kept my mind from wandering into dangerous places. At first it was just for fun, but I never was one for doing things by half. I refused to acknowledge the glaring warning signs of burnout.
And I’m sure burnout is a common phenomenon. I’d imagine that those in the medical profession, who quickly discovered the meaning of the word “vocation” would scoff at the rest of us using that word. But that’s how I feel right now-completely burned out. I’ve written many times about how writing is my go-to tool in times of mental distress, but it is incredibly difficult to be in a creative mindset when the media is constantly reminding you that just as we get a handle on this pandemic malarkey, things change again. If you turn off your notifications, your partner or someone you randomly meet in town is always willing to bring up the dreaded “C” word.
To be honest with you, I’m at the point now where I would gladly shut out the world for a while and chill watching telly all day in my pyjamas. I’d love to remove myself to somewhere remote with a stack of books and read, write and sleep without interruption. I’d love to be on a train to Dublin for no other reason than to meet friends, eat good food and talk shite before heading into the city to look around the shops and buy unnecessary shite. I could still do this if I wanted to, I suppose, but it’s not the same. There’s always that undercurrent of fear. It’s not difficult to see why the so-called “conspiracy theorists” become so annoyed at the mention of restrictions. Some of these restrictions don’t even make sense. Mixed messages from the media, it’s all enough to make your head melt.
And the pandemic isn’t the only thing occupying our minds. We’re still working, raising our kids, caring for loved ones. We’re still experiencing the everyday drudgeries of life: bills, sickness, bereavements. It hasn’t been an easy time. So if you feel exhausted right now, I reckon that sounds about right.
And if you feel this way, you are not alone. This cursed pandemic is far from over, but I say it’s time to indulge in some serious self-care. Turn off the news, turn off your phone, take a deep breath and go easy on yourself.
We need to look after ourselves, and each other now.
Forgive me reader, for I have sinned: it has now been four months since my last blog. I was browsing through it today and decided that I need to make more of an effort to post more often. But I have been writing, I promise. In fact, I decided that I needed to give my novel another chance, after leaving it on the back-burner for the last three years while I got distracted by various projects and courses. I did the Certificate in Disability Studies in 2019 with the view of trying to get another job in the disability sector, and all I have got from that so far is further confirmation that I want to be a full-time writer. Lucrative? Not in the slightest, but I love it. I’ve been doing it for seven years now, with no-one prodding me to write. I’ve gone out of my way to prove that the statement “working on my own initiative” on my CV is true, that’s for sure. And when I look back on my writing career as a whole, I’m proud of what I’ve achieved, how many people I’ve reached and how many opportunities I’ve been given, from Independent Living Movement Ireland (ILMI) in particular (a big thank you once again).
Yet, when the opportunity came to push myself a bit further, I was reluctant. In June, ILMI joined forces with Skein Press and The Stinging Fly, offering a bursary to an emerging disabled writer. I eyed the advertisement with relish, but dismissed it initially. It wasn’t a good time: our house was being renovated and we were living twenty minutes away in Mountmellick, and we were coordinating the renovation as well as trying to keep Alison’s routine normal. The whole ordeal was so overwhelming that I had to step back from activism before I burned out. Suffice to say, it was a busy time, and when I threw the first ten pages of what I would usually term “my excuse for a novel” into the ring, the last thing I expected was to get an email two weeks later to say I’d won.
Reader, I felt euphoric. It was the middle of the July heatwave, and I brought Alison for an ice-cream so chocolatey and stodgy that we needed full showers afterwards; the pack of baby wipes didn’t cut it. I was so proud of myself. I had done it: everything I’d written since 2015 had been leading up to that moment.
But the next morning, after I had sent my “yes please and thank you for this opportunity” email to Nidhi Eipe from the Play It Forward Programme, I felt a sickness in the pit of my stomach. Why did I do that? I won’t be able for it. I’m not a real writer. No way am I good enough for something like this. Nidhi sent me a list of potential mentors from which I had to pick someone to work with. A list of established authors, with their work published, who knew what they were doing. I panicked, and drafted two emails. One was to Nidhi to say thank you but clearly there had been a mistake and I wasn’t the woman for the job. The other was to the two facilitators of a group that I’m part of called Writers Ink, and I wrote that even though I had been awarded this bursary, I wasn’t sure how I was going to maintain a pretence of being a half-decent writer and that I was terrified of making myself look like an idiot.
Thankfully, I didn’t send either email, as I would have succeeded in looking like an idiot. Instead, I stepped away from my laptop and took a breather for a few days. How was I going to shake this feeling of being a complete imposter? How was I going to overcome this feeling of sheer terror?
And then it came to me: I would have to fake it. I would have to pretend that I was a competent writer, capable of writing a novel. You see, the trouble is that I have never really taken this writing thing seriously. I’ve been told by people that there are some hidden gems in these pages, and yet I treat it like a diary, something I think no-one will read (perhaps taking the adage “write as if no-one will ever read it” a bit too far). In reality, despite how far I’ve come, I don’t feel like a “real” writer, deserving of any attention, positive or otherwise. The only thing keeping me going is coming to my laptop every day, telling myself “I can do this,” then typing as fast as I can before I change my mind, or overanalyse what my character is doing.
I’ve been allocated a terrific mentor, author and poet David Butler, who makes me smile: he loves Rachel, my character. Better still, he gets her, which I wasn’t expecting this early in our mentoring journey. He has been so encouraging on this novel-writing journey which can often feel so lonely, and now that I have more (though not full) control over my imposter syndrome, I can take his compliments as well as his suggestions for improvements and feel a sense of pride in my work.
I would like to thank ILMI, the Stinging Fly, the Play It Forward team, Skein Press and David Butler for this incredible opportunity. I won’t let you down!
…Hopefully, if I keep telling myself that, it might turn out to be true.
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.
(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 18th 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 20th 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.
It was the year of solid promises that crumbled away like dust,
Of rising temperatures and gremlins sitting on our chests.
Nothing to listen to but the echoing of our own self-doubt,
Watching careful plans fade away like ink on yellowed paper.
It was a year of suspicion, devoid of hugs or handshakes
When the mechanical birds of flight stayed snug in their hangars
The skies devoid of the faint white handwriting
Diaries of excited travellers in flight.
A year our children were subjected to education
By underqualified, panicky idiots who swore that they weren’t born for this.
The glare from the screens washed their immature brains
With worlds of fantasy – none as scary as this one.
No more was a cough or a fever a mere infection
No more could those we loved most be trusted.
We eyed each other with suspicion. Are they from the same household?
Who are these heathens spreading this new alien disease?
to hide the fear, we joined the zoom calls and the google meets,
Recreated the pubs from our sitting rooms,
Lying to ourselves, telling ourselves we’ll be together at Christmas,
One day, some day, this will all be over
Those voices haunt me at night, like a pile of unfolded laundry-
Will my daughter grow up without my nagging?
How long will my fragile china mind hold itself together?
What will be written on my tombstone?
Assuming of course I won’t be turfed into the fire-
Who knows how many skeletons will lie disappearing into the soil
Their faces covered to hide their pain?
It was a year we’d all sooner forget
Except we must always remember
How we were reminded of how insignificant we were
And how little we really are. How humbling!
A weight off our overburdened shoulders.
Why take ourselves so seriously?
It’s been proven that nothing is permanent
Not even pain.
We will smile again when we and the world heals
Together, as one.
2 1 2021
So, where have I been in the monotony of lockdown, I hear many of you ask. Well, like many of you, I have been homeschooling and sorting out my house. Actually, that last part is a lie. I’ve been sorting out my head – after years of using this blog as some sort of replacement therapist, I started talking to a real one, a qualified one instead. If you have the money, I strongly recommend it. Even though I’ve written about my mother dying and the trauma surrounding Alison’s birth/first homecoming, I’ve never relayed any of the feelings behind these things to a professional, and now, at a time when I have far too much time to think, I decided that it was the right time to tackle my demons and get my real life back. And I have to say, it’s going far better than expected. I feel so different, and more like myself. Look, I’m even writing a blog – it’s a miracle!
We started talking about Alison’s birth and the emotional rollercoaster that came with that, the unfairness of the scrutiny we were under and how it affected my mental health to the point where I stupidly fought Postnatal Depression on my own. She responded with things like “that was hard” and “that was so unfair and clearly damaging”, which made me feel validated in what I felt. Then, at the end of the session, she sent me a worksheet – on forgiveness.
My first reaction was, “Well, clearly she wasn’t listening as well as I thought if she thinks for a second that I can forgive the feeling of being scrutinised, not to mention the subsequent three years (and probably longer, if we’re being honest) of depression.” I shut down my laptop, walked away in anger. I’m not ready to forgive, I thought. That time after Alison was born damaged my confidence, and my relationship with my husband and my child. I felt deprived of the freedom to make mistakes like other mothers. I had been subjected to excessive scrutiny, making an already stressful time, even more so.
But a couple of days before my next counselling appointment, I opened up the file again and read it. Forgiveness is not about forgetting how you were wronged, it is about letting go of anger. I realised that I had been carrying anger around for a long time, and that it was now exhausting me. I realised how, sadly, that anger led me to decide that I couldn’t face having any more children in case the same thing happened again. That anger and fear stopped me from seeking help at a time when I needed it most. Every year, I find Alison’s birthday overwhelmingly emotional because those memories and feelings come flooding back.
And I started to think more closely about the anger that I was feeling. I cannot deny that some good things have come from that anger. I started writing about my experiences as a disabled parent because of it. Many of my peers came to me for advice on starting a family and accessing services on the back of those angry words. I became involved in the (Re)al Productive Justice Project, where I spoke about my experiences with the Health services, both positive and negative, and in doing so, highlighting the physical and attitudinal barriers to parenthood for disabled people. I’ve spoken at the International Disability Summer School about the shortcomings of the maternity services for disabled parents. I’ve written blogs and magazine articles. My blog was quoted in an academic study of disabled writers by Elizabeth Grubgeld, Disability and Life Writing in post-independent Ireland. Most recently, my blog was included in a radio segment called “In the Bleak Midwinter,” which documented a range of women’s stories, some of whom had given birth in mother and baby homes. It was the first time that I considered my story to be part of a wider picture, the ongoing injustices against mothers and their children in Ireland. So I am proud of the part my story has played in this wider narrative.
However, if this stupid pandemic has taught me anything, it’s that life is delicate. It’s short. It’s so precious. And now that I am really ready to heal properly, I don’t want to waste any more time seething in resentment and pain. I want to enjoy my life. So here goes…
To the medical professionals who doubted me, and in turn made me doubt myself – I forgive you.
To the Public Health Nurse, for your scrutiny – I forgive you.
To anyone who expressed doubt when I needed your support – I forgive you.
To those who judged me – I forgive you.
And finally – to that face that looks back at me in the mirror every day, who gave your baby the jar food instead of cooking fresh, who gave (and still gives!) their kid way too much iPad time when times got tough. Who saw seeking help as a sign of weakness, who made some crappy parenting decisions (but a lot of decent ones too) – I forgive you too.
And that forgiveness feels so good.
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.