Sunday Reflection: In Preparation for 2025

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In almost every way, I’m afraid 2024 has been a bit of a letdown. Like a lot of writers, I sat down a few days ago to do an evaluation of my year and disappointingly, in terms of productivity, this has been the year that I’ve done the least writing since I started writing ten years ago. I feel like I let myself down – a whole twelve months without much to show for it. My year began with a trip to the doctor’s office in mid-January, crippled with the most paralysing bout of depression I have ever experienced. She asked me some uncomfortable questions, which made me realise how bad things had gotten, and filled me with indescribable shame. 

I withdrew from everything. I stopped texting friends. Stopped trying to achieve any hint of literary genius. My editing course, which I started a year ago, remains only halfway completed in a cloud somewhere on the net, which is so unlike me – I’ve always flown through my writing related courses. And poor Rachel has been wantonly abandoned in favour of mindless Netflix binges (namely, Taskmaster binges), which is definitely out of character for me – I don’t watch telly really; I didn’t even watch much of it when we were in lockdown, opting instead to try writing flash pieces and to work on the compilation of Conversations about Activism and Change. I’ve lost my confidence, not that I was abundant in it to begin with. 

While I became overly comfortable in my cocoon of fog and self-hatred, a whole year of promise and opportunity passed by. Listen, you must admit that it’s not difficult to become disheartened by the state of the world around us.  I would strongly advise against binge-watching Reeling in the Years for the years 2010-2019, especially if you still have any hope for the future of humanity. Plus, the last few Covid-riddled years have not been easy on anyone, and I’m sure I’m not alone in becoming comfortable in my own company. It was too much time to think, to reflect on all the wrong turns I took, little bothreens that led to dead ends, the many mistakes I’ve made along the way.  

Staying in your head for too long isn’t good for anyone, especially since it’s now universally acknowledged that our toughest critics are the people who look back at us in the mirror. Also, through listening to various podcasts, Mel Robbins being one of my favourites, I’ve come to recognise that my own thoughts about myself are not necessarily true, and that we are hardwired to be risk-averse, because our brains are designed to protect us, a thought regularly echoed by one of my writing mentors, Maria McHale. This way of living, apparently, is not conducive to the creation of art. Indulging in art is risky, because it necessitates opening your soul and using the most personal of experiences to create something that other humans can relate to. 

I cannot waste another year frozen in time, watching any prospect of a writing career sliding down the toilet, and so I am renewing my commitment to keep writing, no matter how demotivated I feel, or how shit I think my words are. Apparently, not everything a writer produces will be dripping with brilliance – who knew? When I started out ten years ago, I thought that churning out novels would be effortless, once I got the hang of it, of course. Enid Blyton could bash out two “jolly good” novels a year, so surely I, too, was capable of it too? Turns out, it’s not that straightforward. Enid Blyton didn’t have to wrestle with the distractions of the Internet – possibly the worst enemy of the would-be prolific writer.  

Also, just because teenagers are more physically independent doesn’t mean that you are redundant, whether you are the taxi-driver or the clothes-washer. And my daughter has no interest in divulging anything that’s going on in her life, until it’s nigh on ten o’clock at night and my eyes are getting heavy – then absolutely everything comes out (and I must admit, I secretly love it!) Being a parent will always come first, but right now I’m relearning what my role is. On one hand, I have more time to write (and more time means less excuses –  theoretically I should be able to blog every day); on the other hand, I spend my time ensuring that all sports gear is washed and dried ready for impromptu matches, and keeping an eye on those cursed WhatsApp group chats. I have so much respect for people with more than one kid, who need to be in two places at once. 

I wanted to post this, firstly as a promise to myself to get more words on the page, regardless of how lousy I think they are, and secondly, as an attempt at solidarity to anyone who’s coming to the end of an equally unproductive year, especially if you, too, have had your plans scuppered by mental ill-health. I see you, and I want you to know that we are worth more than our productivity, that achievement is relative, and even making tiny steps beats doing nothing at all.  

Finally, a warm thank you to those who refused to leave my side this year – you know who you are – especially my rocks,  my husband and daughter. I am so lucky and I love you all x 

Tiny Thursday Thought: Elves not quite Shelved

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It is the 5th of December, and Archie, Sparkles and Ellie, Alison’s elves, have not arrived yet, the lazy sods. Gang, I have searched all the usual places, but I cannot put my hand on the troublesome trio. But I thought, it’s not a huge deal. After all, Alison is twelve now. She’s nearing the end of her first term in secondary school. She’s gone to two teenage discos, has experienced her first crush. Too old for elves, right? She caught me putting them in the blender a few years ago, with Lotso sitting on top, so the game was up; she knows it’s me. But as I write this very piece, I’ve just answered the door to a package ordered in a hurry, containing replacement elves. Honestly, the things we parents do for our (preteen) kids!

Just last night, when I was having the usual bedtime chats, Alison surprised me by asking whether the elves were coming back. Because she’s old enough, I told her the truth: that the original ones are missing, and that I ordered new ones to come and stay. To my surprise, she handed me her two foot ornamental gonk, winked at me, and said, “I wonder if this lad will turn magical and do something when we’re asleep tonight.” This morning, she found him sitting up in the bath, a handtowel wrapped around his waist. Surprise, surprise: I’m not too inventive at nearly eleven at night. Now, she didn’t exactly squeal in excitement, but there was definitely a hint of a smile on her face. Even though she’s now in secondary school, with a schoolbag heavier than an army tank, she’s still just my little girl looking for magic.

Like many parents of my generation, I got sucked into the Elf on the Shelf thing against my will. My friend introduced Archie to our home (if you’re reading this, thanks a bunch Kate!) when Alison was four. She’d already been introduced to an elf called Archie in playschool, a sort of mini-police officer dressed in red, that reported back to Santa on a daily basis. To be honest, the whole thing freaked me out a bit, not to mention the toy’s creepy little face. The whole idea behind it is to report behaviour to Santa. Oh, and apparently if you touch it, the elf loses its magic.

Neither of these things I have ever said to Alison. It was something she learned at playschool, and explained to me as I looked in wonder, pretending not to know where Archie had come from. Controversially, I decided that if Archie was going to be a fixture in our lives for at least the proceeding eight years, then I didn’t want him to be a tattle-tale to Santa. Alison was an only child, and she deserved to have an ally. Mum and Dad were always on her back; she didn’t need a creepy little doll watching her every move as well. She needed a confidant, someone she could have a laugh with.

As the years have flown by, the elves have been on so many adventures, from wallet robberies, to playing concerts to packed-out audiences and of course, Alison’s favourite – the winter wonderland, which is all our Christmas ornaments laid out on the coffee table and dusted with flour (always an absolute nightmare to clean up). I’m a writer, and this is one of the few times it’s paid off: Archie, Sparkles and Ellie write individual notes to Alison; each note has its own distinctive voice, and as she got older, Alison started to write back. I would argue that there is no greater writing exercise than trying to get into the quirky minds of imaginary elves, at eleven at night. And if she’d written to the fairies too, well, let’s say they were some of the few times I’d wished I was a coffee lover. I’m simultaneously proud and ashamed of the BS I’ve churned out over the years. Then, of course, you have to keep track of said BS, because although you can’t remember whether you said that Snowflake’s hair was red or blonde, Alison remembers. (Yet I can’t include these notes in a professional writing portfolio. The injustice!)

By the time Alison was nine or ten, I was starting to run out of ideas for the elves. Think about it – six years times twenty-five days meant 125 different elf antics, all in the confines of my house! Two years ago, in desperation, I turned to Facebook and followed the Elf Idea pages, hoping for new antics. Some of the ideas are so elaborate I wonder if these people have jobs. Nonetheless, I’m all for making Christmas magic – to a point, of course.

This morning, however, as I was scrolling through Facebook instead of doing my morning pages (an exercise, a bit like this blog, where you write pure crap in the hope of eventually hitting gold), I came across a post from a parent who wanted the elf to punish the child for not doing well in a school test! If that wasn’t fecked up enough, other parents offered suggestions! Now, of course on bad days, I’ve pointed out to Alison that Archie, Sparkles and Ellie are reporting back to Santa, but my husband and I decided that we were the parents, *we* needed to take sole responsibility for disciplining Ali if and when necessary. I did threaten her once or twice, but on those rare occasions the elves have written saying that although Alison was naughty, they knew that she was a good child, a human child who makes mistakes. A lesson that, over the years, the elves have been more successful at teaching her than we ever could have been. A reminder to a little girl who is sometimes too hard on herself, that she, too, can make mistakes and still be loved.

This may be a bit controversial, but the idea of a wiry doll dressed in red holding a kid to account for their behaviour doesn’t sit well with me. Santa is one thing, but he’s not a physical presence in your house, and isn’t that the beauty of it? Can any of us, child or adult, be good and “well-behaved” every hour of the day? I think not. So why has expecting this behaviour from children, especially at a time of the year when they’re exhausted from routines and early mornings, not to mention friendships and the chaos of afterschool sports and matches, become the norm?

Talking to a disappointed Alison last night made us both so emotional. Because the truth is she needs those elves. It’s a form of communication between us about things that might be difficult to express. A reminder that we all need a bit of silliness in our lives, that we deserve to be loved in our best and worst times. And if that’s what those silly red dolls represent to my daughter, then I’d better go and google enough antics for the next twenty years, obviously while staying away from those stupid Facebook groups.

My little girl might not be so little anymore, but she’s reminded me that the little things are still the big things. And I’m so excited to see the look on her face when she comes home today.

Dear Martin Naughton…

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A letter to Martin, eight years after your passing

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

Dearest Martin,

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

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

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

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

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

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

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

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

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

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

Love Sarah xx

Thursday Thoughts: All in My Head

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(written 21 October 2024)

I’m sitting at my computer this morning, while my two dogs snore loudly on their bed beneath my black desk, the one I got last year in JYSK and assembled with the help of then eleven year old Alison. This is what every working day should look like for a writer: Microsoft Word open on the screen, the cursor blinking impatiently as it waits for you to input the masterpiece you are weaving in your head. It’s been almost ten years since I decided to throw any prospect of future employability away and instead pursue some vague ambition to become a writer. 

Most days, I enjoy it. Above everything else, as I have mentioned several times before, writing has often been the only thing keeping my fragile mental health from shattering into bits. If you, dear reader, have any perception of what this feels like, then you can also imagine how frightening it is when you feel yourself being pulled down that dark road of nothingness, and the thing that you normally rely on to pull you out – a string of words – refuses to materialise. Not only were the words not appearing, my will to sit in front of a screen while I bubbled with frustration was also fading quickly.

I’ve been wrestling with mental health issues for years, along with approximately twenty-five percent of the population. Over the last few months, I’ve recognised a pattern which sets the darkness in motion. First of all, I become tired, just like any ordinary person becomes tired. When I’m tired – and I’d wager I’m not alone in this – even the simplest things become overwhelming. There’s an extra load of laundry I hadn’t planned on tackling today. Alison’s bedroom may look clean, but if I open the wardrobe and drawers, I’ll have to deal with the crap in there. None of these things are life and death, as long as you’re in the right state of mind. 

As for writing a novel, well. You might as well say go and climb Everest, because neither seem possible when the black dog comes and licks your hand.

I know in part that the chronic pain I now live with contributed to this round of misery. It’s been four years, and yet I’m struggling to accept that what my mind wants to do and what my decripit body is able for is not in alignment. Lowering my standards isn’t in my lexicon, and that creates problems daily. Often, I go to bed frustrated because that load of laundry lies unfolded in the dryer, or because there’s toothpaste cementing on the side of the washbasin. I am a writer, but I’m also a stay-at-home mum and wife. If my husband can manage his job and bring in a wage, then why can’t I manage mine?

Then, of course, it occurred to me that the above narrative is not helping my mental state, and that the only way out is to be kind to myself. This is in direct opposition to everything I’ve trained myself to do over the years. Tough times? Push through it. Want results? Work harder. After a spell, the messages become nastier. What made you think you could write a book? What’s the point in applying for work, when your last full-time job was ten years ago? Imagine this on repeat all day, like a soundtrack on Spotify; sometimes the order shuffles a bit, but the core messages are invariably the same:  You are going nowhere. You have wasted your life.

Before the summer, while packing to go to Australia for a month, I just said enough. I had just turned forty. I’ve no novel, no marvellous collection of short stories, and not enough work coming in to justify my role as proofreader. But why do I rely on these titles to give me my sense of self-worth? I came in here into my office and took out Conversations about Activism and Change, which may be the closest to a published book I’ll ever achieve. And while it isn’t perfect, I now leave it on my desk as a reminder that I am capable of conceiving and completing a project. I can handle the monotony of transcripts and editing, and editing, and more editing. Now, I can be proud that the book has made a contribution to Irish disability history. A book that came from a throwaway comment to a friend about yearning to record the people’s history of the movement.

At the moment, it often feels as though I’m watching my own life from the outside, like a boring silent film, but I have started to chisel away at the glass and hopefully soon it will shatter completely. I’m impatient by nature, but now I’m coming to accept that I can’t just bounce back into the life that I drifted away from this time last year and expect to pick up from where I left off. That said, my friends have all been incredibly patient and understanding and have helped me in rejoining society, physically and mentally. I also know I need to be kind to myself. Losing so many friends in the space of a few months has hit hard, and I need to readjust to loving them in a different way to what I might like. But I am getting there, and it seems that writing might be the key.to unlocking my life, after all.

Tuesday Thoughts: Pain in the Ass

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(aka JP’s affectionate term for me. Just kidding)

 (This post was inspired by Julie Helen’s column about her quest for a new wheelchair. I strongly encourage you to read her weekly column on EchoLive, where she writes about a wide variety of topics from a personal perspective.)

It was the weekend of my mother’s fifteenth anniversary that I discovered the letter in my postbox outside, and I took this as a sign. I opened it excitedly, knowing exactly what it was. At last, after fighting for the guts of three years, I had an appointment to administer a pain injection into the buttock of my right leg. This couldn’t come at a better time. The appointment was for Friday, 7 June 2024, and we were due to go to Australia on 1 July. I shivered in excitement at the thought of running around after my sister Alex’s little ones, Cathal and Grace, playing with them on the floor. For the first time in four years, I might sleep for more than two hours straight! Imagine waking up refreshed! Thus, I’d have more energy to write, and do courses, maybe even start cycling on the trike again (I do 2/3 45 minutes sessions on the exercise bike a week, but it’s not the same). 

As the day drew nearer, I did an extra physio session every day, as I dreamt about my pain-free life, smiling as I imagined folding up the wheelchair and throwing it into the spare room. I was tired, but I didn’t care. All of my hard work would be worth it when I was back wobbling around the place.

I don’t know what I was expecting from a little pain injection but suffice to say I will never know. Friday, 7 June was a sunny morning, and I beamed broadly as JP drove us up the M50 towards Tallaght. It seemed the universe was working in my favour; there was hardly any traffic, we didn’t miss our turn-off, and we were parking outside Tallaght University Hospital at 9.15am for our 10am appointment. JP was excited too; I’m sure I wake him often, tossing and turning all night. We found our waiting area quickly, and at 10.20am my name was called. When we reached the room, everything was waiting: the team of doctors, the ultrasound machine, the bed covered in tissue. It was a moment of triumph. I’d been fighting for this moment since November 2022, when they told me that there was nothing they could do for me. And now my recovery was about to start at last.

I was helped onto the bed and a team of doctors carefully pulled down my trousers and started the scan. Suddenly, one of the doctors asked for the head of department to come down. Apparently, even though I maintained that he was rubbing his scanner over the painful area, they couldn’t see my sciatic nerve. Now, I’m crap at biology – my Junior Cert teacher regularly read out my test answers to entertain the rest of the class for the comedy effect – but I do know the sciatic nerve is the main nerve, and if they couldn’t find it, I wasn’t sure I wanted them anywhere near my ass with a needle. 

 I was asked to sit up and I was helped back into my wheelchair. I tried to act like a professional patient, but I couldn’t stop the stinging tears rolling down my face. Your injury is probably just a contusion, they told me. You couldn’t stay still enough for the scan, and we can’t really see any damage. We’re sorry.

This has gone on for four years, I said. So you’re saying this pain is all in my head?

No, no, of course not. We’re saying there’s no silver bullet (Martin Naughton might say “No Magic Pill.”) Keep up the physio, painkillers, TENS etc. Pain management must be a priority in the long term.

Dammit. They warned me that would happen, but I’d pushed for the injection anyway. I have never felt more stupid. Driving home in the car, I saw my fantasy of getting my twenty-year-old body back disappear. More importantly, my dream of walking around Australia on my holidays vanished into thin air.

I never used a wheelchair in my life until I was nineteen years old. Day after day, I pushed through pain and tiredness as I trudged around the Sacred Heart School, going up and down stairs, navigating through the crowd. This was on top of cycling to and from school, every day, for six years. I was pretty darn proud of myself, I won’t lie. I developed an irritating superiority complex where I thought I was better than other disabled people. I was integrating myself like a fridge into a kitchen, becoming invisible in the process.

I have never felt more valuable as I did in my younger days, and now I can see how problematic that is. I’ve written before about my experience of internalised oppression, and even at the ripe age of forty, I struggle to shake it completely. The truth is, I am ashamed of how my mobility has deteriorated. I tend to view it as a personal failure to push myself, to take care of myself, rather than the result of years of trying to make my body do things it’s not designed to do. Sure, I made a choice to use a wheelchair so that I could have energy to write these blogs and hopefully, with Ali in secondary school now, re-enter the workforce and get involved again with the Independent Living Movement. I know the reasoning behind my decision was sound, and yet I haven’t fully dismantled the years of internalised oppression, so let’s face it – I’m an awful hypocrite.

The realisation that I wouldn’t be walking around by the time we went to Australia hit home like a sledgehammer. However, when we stayed with my baby sister in Australia this summer, I was determined to show her that I was still the same active rogue I’d always been. She’d sourced a steel walking frame from her neighbour Dell, and not having the heart to explain that I don’t really walk too far anymore, I accepted it with a grateful smile, while loading up on painkillers. For the first week or two of the holiday, I hobbled around the house, knowing what I wanted to do, but too ashamed to say anything. The second weekend we were in Oz, we all took a road trip up to Jurien Bay. Our accommodation was accessible, so I could use my wheelchair the entire weekend. 

When we got back to my sister’s house in Clarkson, without prompting or any pre-discussion, my sister Alex greeted me at the car door with my manual wheelchair. No words, no “I know you need this”, not even “I think this is a good idea.” That evening, I set the table, unloaded the dishwasher and hoovered, and I know my sister was struck by the difference in my independence and energy levels.  Not having to pretend was a relief for both of us, and I was surprised by how easily she accepted my need to use the chair – without question. She didn’t say she was sad, or disappointed, or ashamed – that was purely the narrative I’d woven in my own head, a stick I was using to beat myself up with. 

It got me thinking about the wider issues of equality and acceptance which, if you’ve read any of my other blogs, you’ll have gathered is something that I’m passionate about. But how can I expect other people to subscribe to the idea that disability is located outside the self, if I don’t? If I continue to connect my self-worth to my body’s ability to adapt within a society which, directly or otherwise, serves to exclude me, my self-esteem will plummet through the floor! More pertinently, I am handing the systems that discriminate against me a viable excuse to do so, on a silver platter. And whether I like it or not, I am not just an “I”. I am a “we”, a part of a wider collective trying to change attitudes and remove barriers, something I will not be able to do until I change my own attitude towards myself and accept myself in all its wobbly entirety.

Being underemployed at the moment, I cancelled a load of my subscriptions, but one I held onto was an affirmation app, which sends me random affirmations during the day. I admit I don’t always read them when my phone pings, but this morning I just happened to flick through them on my watch, as I sat on the toilet. “I am allowed to take up space,” “It is okay to have a hard day,” “I am patient with myself”, and “I have the motivation to create change,”” are just snippets of the messages that come through hourly. We need to change the messages that we as Disabled People are absorbing and, consequently, sending back out into the world. Most importantly, we need to change the stories we tell ourselves, about ourselves.

I often feel like a right pain in the ass when I write this kind of blog, but this – along with other authentic voices of Disabled People – is the only way to change the narrative around disability, for ourselves as well as within wider society. When we take control of the narrative, we can write our own endings, hopefully depicting a fairer world of acceptance and inclusion.

Poem: For Leigh

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We went travelling in Australia for the summer and, while we were there, a month to the date today, in fact, our friend Leigh passed away. Even though I was devastated, I don’t think it really hit me until I came home to Ireland.

I met Leigh by chance at a meeting in Dublin in 2014. We knew each other by reputation, and a friendship developed and blossomed over the years. Leigh reminded me of my mum so much, not because she was older(!!) but because she was from Newry and had a way about her that I ascribe to so many of my Northern Irish relatives: she had a wicked sense of humour; she said it as it was; and she was well accustomed to fighting for what she believed in. I tried scrolling back through our masses of Facebook conversations, to see when we first started messaging each other. After an hour, I was only as far back as 2018. Reams and reams of exchanged words of encouragement, anger, hope and fear.

Leigh was a religious reader of this blog and rarely neglected to leave an encouraging comment whenever I shared the latest instalment. During lockdown in 2020, she took up painting and sent me a canvas of two brown and white puppies, which I will treasure forever.

This hackneyed effort of a poem below won’t do Leigh any justice, but I can only hope she knew how much her friendship meant to me.

My condolences to Eugene, Karl and Aisling. You guys were her everything; that I know for sure xx

My grief-scarred heart 
Oozes gunge 
While I try to lend words
To articulate the loss
Of a headstrong woman,
Mother,
Wife,
Activist,
Friend.
Many times she wrapped me
Close to her heart
With her shortened arms
and endless patience,
Venturing across divides
Of land, time and attitudes,
Tough, but never hard,
Fearless, but not unfeeling.
The lullaby of her Newry accent
Luring those who tried to take advantage 
Into the searing, fiery ball
Of her passion for justice.
No longer will my phone ping
With requests to read presentations,
Or maybe just for a listening ear,
To ease her soul, though just for a moment.
And as long as I live, I will never forget
The woman who travelled to Texas and Pallaskenry,
Chasing dreams that were almost denied,
Crying tears she never should have cried,
To find the right man to stay by her side.
Nerves of steel, and a marshmallow heart
Ever present, yet too far apart. Xxx

Tuesday Thoughts: The Baby Book

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Even though I have my own swanky writing office, I’m currently sitting in my kitchen typing this, the back door open so that the breeze on my face keeps me awake, and so that the dogs can potter in and out without scratching at the door every five minutes. In front of me, on the wall over this dining table, are two black frames full of baby pictures of Alison with her aunties, her uncle, her grandad. It seems as though my love for her is splashed across the walls of our house. Her playschool graduation photos hang in the hall; her communion photos are in the sitting room. 

I’ve always loved photos. When I moved to college, the inside of my tiny wardrobe was covered in photos of family and friends. Until I got my first camera phone, I would bring these photos with me to remind myself that I was part of something bigger.

I didn’t own a camera phone in 2012, when our daughter was born. I didn’t have a whole lot, in fact. But life goes on, and incidentally, people who try to tell you that you should wait until you can financially support a child are talking nonsense. You will never be financially ready, or ready full stop. We were both working part-time, and juggling childcare between us, and a lovely lady called Sharon. And because we were both working, neither of us had medical cards. When Alison was diagnosed with cow’s milk allergy in June 2012, she was prescribed Nutramigen, which was €12.33 a tin at the time, so three tins was nearly €40. Camera phones were the last thing on my shopping list.

When I look back now, I wonder if I should have tried to savour it all a bit more. It wasn’t as though I wasn’t warned about this. People warned me that the days would drag but the years would fly. Advised me to treasure every moment, because she’d be gone before I knew it. To really make the most of it. And to be honest, now that Alison is entering her teen years and I’m trying to figure out what my new role is, I feel awful for having taken it for granted. 

As Alison and I enter a new and trickier phase in our mother-daughter relationship, once again I’ve found myself questioning my parenting ability. I know my parenting was scrutinised by professionals in the early days, but these days I find myself to be a harsher critic than any nurse, doctor or social worker. I need to be more delicate. No, more direct. No, more lenient. No, stricter. I give her too much independence. I need to let go more. Come nine o’clock, I will have a pain in my head, as I’m sure all parents of teenagers do. And this is without the traditional worries of sex, drugs and rock’n’roll, which I know are only around the corner.

And I see now that I should’ve captured her a bit better. I didn’t keep the first lock of hair that was cut. Nor did I keep any of her teeth. I have videos of school concerts, blurry ones that were taken by my shaky hand. I have incoherent handprints, futile efforts to capture her at a certain age. I didn’t mark the wall every year as she grew taller – this is the one that I regret most. I haven’t even made a baby book. A book recording her first words, the first time she crawled, her first steps. I don’t have the hair from her first haircut. These things weren’t priorities at the time. My main focus was on surviving and giving her as much of myself as possible.

Yet, I have such lovely memories that are mine alone and I don’t need to share with anybody.

Memories of teddy bear cinemas on Sunday mornings. Of tea parties and picnics on the kitchen floor. Of doing all the things I’d swore I’d never allow my child to do; Play-doh, sandboxes, art involving glitter and paint. I remember midterm breaks that involved me bringing her to Mr. Price to buy a few bits for a Pinterest-inspired art project, especially around Easter, Halloween or Christmas. Clay figurines, lollipop stick houses. It was a joy to watch, as she got older, the improvement in her colouring or the increasing time she’d give to painting decorations. She would design our Christmas cards and handmake birthday cards for family and friends, projects that were thinly disguised activities to get us both from one day to another on days where I struggled to hold everything together. 

Or we’d walk down the canal and pick flowers (weeds), again killing time while she looked for “rare” flowers. I used to love these walks. We’d find conkers and helicopters, all of which were pocketed of course, then caused problems in the washing machine when they were undiscovered. I remember the long days we spent in the town park, chasing birds or looking for butterflies or ladybirds.

I remember teaching her how to read, making cards with words like “table”, “chair”, and “fridge”, and watching in awe as she stuck them to the correct objects around the house. I remember the first book she “read” on her own: Angelica Sprocket’s Pockets by Quentin Blake. I remember her first day of school, how lost she looked in her uniform, yet how enthusiastic she was. In fact, until last year, Alison rarely missed a day of school, such was her love of learning.

On the sad day when she decides to fly the nest, I will have copious amounts of artwork, stories and photos to look back on. But the most precious will always be my memories, of a happy, intelligent and truly unique child, which will live in my psyche until I take my last breath. I know that I did my best. And I have a loveable girl to show for it.

Tuesday Thoughts: Empty Batteries

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(written Wednesday, 20 March 2024)

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

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

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

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

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

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

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

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

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

October, I sheepishly admitted. 

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

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

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

Tuesday Thoughts: Too Close for Comfort

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Do you ever find yourself looking at a date and trying to figure out why it’s important? That was me, squinting at my phone this morning. March 12. Holy crap. Why this suffocating feeling of dread? Have I missed a writing deadline? (I’ve missed several, thanks to my unpredictable mental health). Do I have some medical appointment? An important birthday? I checked my physical and digital diaries. No entries.

Some dates are just etched into the fabric of your psyche forever. And as I sat in the shower, a jolt of electricity awakened me, and suddenly I remembered. Funny, because there was a time that I never thought I’d forget. I can’t believe it’s been fourteen years since my life changed in many ways.

It was Friday, 12 March 2010. It was just under five months to D-Day, the day when my fiancé and I were due to declare our eternal love for each other. Our fathers had both made generous contributions to the proceedings earlier that week, and JP and I had decided that, rather than trusting ourselves to save the money, we would immediately pay off the entire wedding to alleviate the financial strain. To celebrate, we’d arranged to meet in Caffe Latte in Portlaoise for lunch, a rare treat after months of careful saving. I withdrew the money from my account and he brought it to the Credit Union to be made into various cheques. 

While I waited, I beckoned the waitress and ordered. As I watched her retreat behind the counter, I noticed two men at the next table, staring at me. Now, as a disabled fascination, I’m well used to being stared at, but this felt different.  Uncomfortable. I stared back to let him know that I’d clocked him. Usually whenever I do this, the offender looks away in embarrassment, but this guy didn’t. In fact, he seemed to stare harder.

When JP arrived, he started explaining what he did with the money and I told him to shut up, something I never do. I was worried that these guys were earwigging. He sensed my discomfort and asked what was wrong, but I couldn’t explain. Caffe Latte was bijou, and there wasn’t much space between tables. I just shook my head and wolfed down my lunch, mumbling “I’ll tell you later.”

After a rushed lunch, far from the relaxed affair that I’d been looking forward to, I decided that I needed to go for a cycle, to clear my head. I’d cycled from our house on Harpurs Lane to Lyster Square, the perfect distance for a quick workout. John Paul’s car was at home, so he could have easily walked beside me, but I insisted that I wanted a few minutes to myself. I darted in front of JP, calling “Hee-hee, I will be home first.” I cycled out of Bull Lane onto Main Street, stopping at Shaw’s to see if he was behind me. JP wasn’t. However, one of the men from the café was. And he was watching me. Following me.

At first I laughed at myself. What notions I had, that this lad was following me! Wasn’t I just full of myself? After all, I’d lived in Dublin for four years. Caught Luases back to Trinity on Sunday evenings. Caught 14As on summer evenings from Trinity out to Halls in Rathmines at 7, 8 o’clock. I’d never had hassle. So why would some random guy follow me home on a Friday evening, at 3pm in broad daylight? Yet, this was what appeared to be happening. The faster I cycled, the quicker he walked. At one point, I glanced down at the odometer on my tricycle. Fifteen miles an hour. That’s how anxious I was to escape. And he was still only a matter of metres behind me.

I darted under the railway bridge towards Harpurs Lane. Suddenly, I had the bright idea of cycling into the middle of the road, trying to stop someone to help. No-one did. Two cars pulled out around me, leaving me at the mercy of this stranger. By now, he was annoyed; he obviously hadn’t expected the speed. For months afterwards, I thanked God on a daily basis that I had the good sense to stay on that tricycle. If I had been walking, or even in my wheelchair, this story would’ve ended differently. I have no doubt about this. Later, when I learned who he was and what he was reportedly capable of, I no longer felt victimised. I escaped lightly. 

I stopped outside my house. My legs felt as though they would fall off. Then came the barrage of questions, with his face in mine. That’s why I will never forget what he looked like.

“Do you have money? Fags? A phone? Is this your house? Where are your keys?” He motioned towards my house.

At the time, my tricycle had a mechanism which meant I could cycle backwards. When I went to do so, a young girl who must have been following us was holding onto the basket so I couldn’t move. She wasn’t any older than twenty. I cycled into her and wriggled free, cycling back up towards the Mountmellick Road.  No sign of John Paul, and why would there be? As far as he was concerned, I was at home, tidying up so that we could take off to Tullamore and start paying off the wedding. Not wrestling with a stranger in broad daylight. I couldn’t go into my house. At least out in the open, there was a chance of someone spotting us.

I cycled up towards the Mountmellick Road again, my two would-be attackers following me closely. This time, John Paul walked around the corner to be blasted with my shrieks. The man slinked past us, not saying a word. Apparently, the girl said “I’m sorry” to John Paul as she walked past him.

It took until we were in the car to Tullamore to calm down and explain to JP what had happened. By the end of the evening, despite being shaken, I resolved not to let it define my life. I had a right to live in Portlaoise, and that was what I was going to do.

The next morning, back at home in Harpurs Lane, I heard a knock on the door. JP had already gone to work, and I was resting in bed. At the time, our house could easily be broken into, with old doors and single-pane windows, so I knew it wasn’t my would-be attacker. Still, I looked out the window before answering the door. It was a Garda who’d received no less than five calls about what had happened the day before, from people who had driven by. My attacker had been identified. He was known to the guards, a notorious heroin addict. But I was not to worry. The guards had warned him to stay away. He wouldn’t be bothering me again.

I wasn’t filled with confidence, but I was stubborn. No-one was going to dictate how I lived my life, and certainly not a stranger. So, I got onto my tricycle, and cycled into town. And I saw him. He diverted his eyes, but I know he saw me, too. And I saw him again as I cycled home. JP was with me; I’d met him after work. My legs were frozen with shock, and he pushed me home.

As I sat at home that evening, my mind went into overdrive. Was he watching the house? After all, he knew where I lived. He’d also be able to tell when I was alone, if JP took the car to work. After a full week of no sleep, we decided that the only thing we could do, to guarantee my safety, was move back to Tullamore, moving out of our cheap council house back into expensive rented accommodation. And with the wedding paid off, that’s what we did. We had family and friends here, who we could ring in an emergency. I’d never had to consider that before, and it felt so horrible and disappointing. Now, don’t get me wrong – we were going to move to Tullamore anyway, after the wedding. Our house was damp and I was constantly sick with chest infections. But it hurt that the decision was taken out of our hands.

I hadn’t thought about this incident for years, but it all came flooding back last autumn as I listened to Jozef Puska’s trial, for the murder of Ashling Murphy. Like many women across the country. I think of her often. She was only two years younger than I was when I was followed home. She, too, was planning a wedding with her soulmate. A beautiful young lady, going about her everyday routine in broad daylight. And although there was uproar after her murder, not much has changed and I doubt it will in my lifetime. At the time, there was much uproar about Jozef Puska’s nationality, but I believe that human decency – and indecency – are universal. My attacker was local, an Irish white male. He’d no reason to pursue me, just as that monster had no reason to brutally murder Ashling. And as I listened to that farce of a trial, it triggered memories of that March day. It’s not the same thing, I know. I wasn’t physically attacked. I wasn’t murdered.

That was down to nothing else but luck. And the women of Ireland deserve more than that.

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship.