Tag Archives: ramblings

Sunday Ramblings: Jumping Back In

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As I start writing this blog, it is 6pm on Sunday, 2 November, and it is dark outside. I hate this time of year. I honestly think I might have a touch of that SAD [Seasonal Affective Disorder], since I’ve been sluggish all weekend. Perhaps I’m just tired. It’s been two weeks since I got the pain injection into the shambles I call my hip. And while I’m not quite back walking full time yet, there have been some marked changes in my life. This afternoon, I took a painkiller for the first time in two weeks. Not because my hip was at me, but because I had a headache above my eyes, possibly from too much screentime. This afternoon, I cooked a delicious (if I say so myself!) steak dinner, complete with roasties and veg, and cleaned up afterwards. In fact, I’ve done a lot of cooking, with or without assistance, these last two weeks.

On Thursday, I went to a local disability meeting, with a group with whom I was heavily involved in prior to Covid. Everyone was shocked to see me. I think that they thought I was dead!

I’ve also managed at least half an hour on the exercise bike every day since last Sunday. I find that it’s taking me less time to cycle the same distance. And, if you’re reading this, this is the third blog I’ve written in the space of two weeks. I could get used to this level of productivity – it feels fantastic!

I need to hold onto this buzz I’m feeling, because I’m not able to go back in time. The truth is, whether I like it or not, I’ve lost so much time because of pain and exhaustion. When I finished the Disability Studies course in 2019, my plan was to do the “Train the Trainer” course, which (I think, but am open to correction on this) would enable me to give my own courses. Not only could I deliver Creative Writing Courses, but Disability Equality Training as well. Earn money, get a paycheck!

Or I’d like to do another oral history project, something like Conversations about Activism and Change. I typed out every word of those audio recordings, before editing them down. Damien Walshe and Des Kenny taught me useful lessons as I compiled and edited that collection, lessons that I’d love to apply elsewhere. Maybe I could do a collection of voices of up-and-coming activists? Without the heavy mantel of fatigue, my brain is swirling with ideas.

There are probably a number of reasons why I am reevaluating things at this moment. One is that I turned the big four-oh last year, and my original plan was to have my novel finished by then. Ironically, the first line of this, as yet, unfinished draft is “There are milestones one is meant to have reached by the time they turn forty.” This was me setting a deadline for myself, one that I’ve now missed. I would like to complete Rachel’s story, as I think many would relate to her internal (and external) struggles. She’s a hot mess, and often I want to strangle and hug her in equal measure!

Alison will turn fourteen in February. God willing, she will be going to college, an apprenticeship or a job when she’s finished the Leaving Cert, and as a stay-at-home mum, I suddenly find myself at a loose end. Where once I filled my days playing Lego, setting up Sylvanian houses or doing elaborate art projects, I now find all the time I once spent one-to-one with her spreading out in front of me like an overflowing lake. Don’t get me wrong – I’m still needed. For example, I was awake until one this morning applying tea-stains to her costume for the upcoming Addams Family Musical, as she is playing an ancestor. Apart from these moments, she’d much rather hang out with friends than her mum, which is a normal part of her push for independence. But I don’t really know what to do with myself.

I’m still available for proofreading work, but anecdotal evidence suggests that my opportunities in this area are fast diminishing in favour of AI. This is part of the reason why I didn’t feel motivated to complete that editing course that I started two years ago. If I think too deeply about it all, I start panicking. There’s nothing quite as sobering as scrolling through jobs.ie, and seeing that I am qualified for nothing relevant, nor have I the skills for local jobs. Waitressing, working on the shop floor, even factory work all seem beyond my realm of possibility. Of course, I apply anyway, because you never know. Dear reader, I don’t know if you’ve ever been to a job club. I have, and it was one of the most humiliating experiences of my life. I did this online career quiz and the top result was “Interpreter”. When the facilitator asked why I was laughing, I said “I can’t be an interpreter. I need one!” Awkwardness rippled around the room as my fellow jobseekers couldn’t decipher whether I was serious or messing.

So that’s where I am now, wondering what I should do next. All offers and suggestions welcome. In the meantime, I’ll be attacking my novel yet again while drinking the tears I’ve sobbed because of it.

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.

D-Day

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It’s the first day of the Leaving Cert exams, and I can’t stop thinking about my godchild, whose christening I remember as if it were yesterday, going in to sit what she’s been told are the most important exams of her life.

I was listening to the radio yesterday (not sure who – Matt Cooper, perhaps?) who was talking to students on air and generally saying listen – the Leaving Cert is important, but not that important. Study, but don’t stress. It’s not the end of the world. The Leaving Cert is not the be-all and end-all.

That’s certainly not the impression I somehow got when I did my Leaving Cert, fourteen years ago. I did Transition Year the year before, and I had been on a respite break with seven other friends with disabilities during that year (incidentally, that’s where I met my husband). The message I got from that week was that the best prospects for disabled people was in doing a computer course or going to the National Learning Network to do an endless string of courses in job preparation. Has my journey through mainstream education been a waste of time? I thought glumly. Now don’t misunderstand me, or interpret my reaction to be borderline snobbery, but I was afraid that society was trying to mould me into something I wasn’t. These courses are great, but I do think that students with disabilities should feel that anything is possible.

So, as a statement against the status quo, and because I wanted full control over my future, I decided that the only way I was ever going to do this was to get 500+ points in my Leaving Cert (yes, I am a little mentally unstable-how did you guess?) For nearly two years, I threw myself into my studies. I don’t know how I still had friends at the end of it because I never went out to the Harriers or the Bridge House. I don’t exaggerate when I say I spent a solid six hours after school, studying. Soon I became obsessed. If I was going to spend the time studying, I had to be the best. If I got 75% or less in a class test I would openly bawl my eyes out.

I remember my dad saying to me about a month before the exams that if I didn’t slow down, I would have a massive heart attack and be dead before the Leaving came around. He was so worried that he threatened to stop me sitting them altogether. I looked at him incredulously! What did he know? How could he possibly understand how it felt to be the only person in my year with a (visible) disability and so much to prove? Didn’t he know how important these exams were to my future?

No, and he didn’t care. Neither did mum. What they did care about was the fact that I had no friends apart from John Paul, about the fact that I couldn’t relax, or take an evening off study without having a massive panic attack, about the fact that at 12 o’clock they would walk past my room on the way to bed to find me still studying, my books sprawled all over my bed and me panicking because I couldn’t memorise that Irish poem or the ins and outs of the heart in spite of studying all evening, probably on little or no food and definitely no rest (food and rest is for the weak, yo.)

And yet, it paid off. I got enough points (bang-on enough) to get into Trinity to study English (the DARE scheme may have helped a little). The relief was immense; it took a long  time to get used to not stressing out over the Leaving. And just when I became accustomed to calmness, I had my dissertation and exams to worry about! I really wanted an Honours Degree, and I did study just as hard (albeit in the final few months!) and it paid off…

…and now I am a writer, spending day after day writing and researching, blogging and editing. Did I need a good Leaving Cert to do this? Was it worth the hardship? Personally, in spite of the hellish experience that was my Leaving Cert, I don’t think it’s fair or right at this point to be dismissive of its importance. How can teachers, parents, society think it’s okay to spend two years of a student’s life drumming into students that this is the most important exam they’ll ever sit, and then turn around afterwards and say that it wasn’t that important?

Yes, it’s true, no-one ever asks how many points you got twelve months later or (unless you’re an Irish teacher) you’re never asked about the main themes of A Thig Na Tit Orm. And yes, many of us do want our children to have a strong work ethic, but at what cost? Why are we still sending out the message that your worth as a person is based on one set of examinations, and lying to our young people, saying that it could shape your future for the worst or the best?

Because I’ll let you in on a dirty secret: your worth is not how many points you get. It’s how you use your talents to shape the future, be that through medicine, teaching or volunteering to help others. And guess what? Learning is fun – it’s true! I don’t mean school – I mean the learning you choose to do. I’ve done three correspondence courses so far and it wasn’t about the marks, it was about accomplishing little challenges. I loved them and can’t wait to do more.

So do your best in your exams, and spend the summer doing some proper learning. Learn how to cook, how to use the washing machine, how to budget. How to get a week’s worth of groceries for €25 so you can go out on a Thursday night. Meet new people and learn how to tolerate their quirks and annoying habits.

There are no grades, but these are lessons you won’t forget.

And Caoimhe, best of luck. No matter how these exams go, never forget that you are a kind and wonderful person and we all love you so, so much xx

I’m only human, after all…

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TMI alert, people: I’m currently in the middle of my, shall we say, ’emotional’ time of the month. And as every woman out there knows, during this period (pun intended) we can become irrationally angry or overwhelmingly emotional for no apparent reason (but hey, isn’t that what chocolate is made for?) Anyway, there is a point to this, I promise. Stay with me.

My husband, my daughter and I were travelling in the car on Monday when ‘Human’ by Rag’n’Bone Man came on the radio. Of course, being an emotionally unstable female, I was instantly in floods of tears, much to the surprise of my husband who nearly crashed his car in shock.

‘What’s wrong with you?’ he blurted out, while I wiped my tears. I shook my head.

‘It’s crazy time again,’ I joked as I tried to compose myself. But there was more to it than that, and he knew it too. And I didn’t have the words to explain. I do now, though.

The energy of the song and the repetitive line ‘I’m only human after all’ brings to mind what’s been going on in the media over the last few months with the remains found in the septic tank at the Mother and Baby Home in Tuam. Like many of us I feel sick as I think about all those women, both young and old, who gave birth to their babies and never knew what became of them. It’s likely that some, if not most of these pregnancies were unplanned, and instead of being supported these women were disgraced, disowned by their families, and left in the hands of the nuns. You’ve read some of the stories, I’m sure. It’s truly harrowing stuff, and it’s been playing on my mind for the last two months.

How can we claim to be compassionate when we don’t even allow people to be human?

I live in a country where my rights as a person with a disability are not protected. This is because something called the United Nations Convention on the Rights of People with Disabilities (or the UNCRPD) hasn’t been ratified by the Irish government. In theory, this Convention guarantees that no person with a disability should be forced to live in an institutional setting against their will. It guarantees access to Personal Assistance as a right, not a privilege. Those who have ratified the Convention (and Ireland is the only EU country that hasn’t) are answerable to the UN if human rights are breached. With constant threats of cuts to PA hours and people with disabilities having to give twenty four hours to use public transport, Ireland would certainly have a lot to answer for.

What upsets me the most is when you have a disability, you’re not allowed to make mistakes. Everyone makes mistakes, takes wrong turns and yet, when you have a disability you’re either expected to be some kind of Superwoman, or an utter failure. If you make a mistake, well, obviously you’re not cut out for education or parenthood or whatever it was you were trying to do. People judge each other; I’m no different. But this pressure to live up to an arbitrary standard, set by people who may have no experience of disability, is overwhelming. As my loyal followers are aware by now, I came up against intense pressure to prove myself when I had my baby girl. And as you may be aware, I never sought help for my postnatal depression which lasted two and a half years because I was afraid that, combined with my disability, it would give the HSE the authority to take my daughter.

And my overwhelmed, hormonal, PMSing self thinks this is truly unfair. I feel frustrated and tired with it all, and I only wish there was more I could do to challenge this injustice, to stop history from repeating itself. Sometimes I wonder if life would be easier if I wasn’t so sensitive, so stubborn, if I just didn’t care. But the truth is, I do care. A lot. Too much.

But there isn’t much I can do at  eleven at night, and I’m pretty stuffed from that Easter Egg I’ve just polished off…

Hey, don’t judge me, I’m PMSing.

…and I’m only human, after all…

I hate to be a burden, but…

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Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

Meaningless rant on a Friday night

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I’m upset. And I know deep down when I’m upset that I should turn off the laptop, walk away and root out a tin of Celebrations from the spare room that ‘we’re saving for Christmas.’ But like a fool I can’t do that. I need to get this off my chest.

First of all, I’m upset with myself. I’ve been around for thirty-two years, you’d think with all of the physical and metaphorical knocks I’ve had in my lifetime my skin would be thicker. That stupid comments wouldn’t get to me.

Today, Ann Marie Flanagan, a disability activist from Clare, wrote a well articulated article for thejournal.ie about why Ireland urgently needs to ratify the United Nations Convention for the Rights of People with Disabilities. Unfortunately some of the comments on the article demonstrated the frightening ignorance of some of the Irish population. (I have said ‘some’ twice, I am not making generalisations, okay. Some of you are lovely). Yes, I know, thejournal.ie and trolls are well-known bedfellows. And like the gobshite that I am, I fed the greedy trolls.

One comment that was made was along the lines of ‘You need a PA to get things done and you thought it’d be a great idea to have a child?’ I don’t know this person from Adam, nor he me, but this isn’t the first time I heard this particular line. In fact, the first time I heard this was in the hospital the day after I had my daughter and I was walking to the toilet for the first time after the section. It wasn’t even a nurse that said it, it was an orderly (who we reported afterwards).  It wasn’t any of her business, but we weren’t going to go all angry  crip on her and run the risk of not being able to bring Alison home. Which nearly happened anyway when the head midwife suddenly, for no apparent reason, decided that we couldn’t go home because I was going to be a danger to my baby.

And that moment has never left me. I fought so hard to prove myself before Alison was born, and yet it wasn’t enough. And when I developed postnatal depression afterwards, I felt that I couldn’t seek help in case I accidently revealed some vulnerability and had my daughter taken away from me. There’s an underlying narrative to disability: everything is a struggle. That narrative begins from the day we are born. And I’m so tired of it, I really am.

I’m tired of biting my tongue every time someone comes over to Alison and says to her ‘are you looking after your mammy?’ I know it’s harmless banter, but I’m the parent, she is my daughter. She has her little chores but nothing like a carer’s role. And having a good PA service will ensure it always stays that way. Alison is very much a child, and will always be, because I am her capable mum. I have to tell myself this every day, and I’m sick of it.

I’m tired of explaining my personal choices to strangers, of having to reassure them that I know what I’m doing (I do have a Trinity degree after all) and having to wangle that degree into conversation to gain credibility from them.

I’m tired of the weight of history on my shoulders, a history that depicted disability as a fate worse than death, that it was perfectly okay to control disabled people and their families by denying them the appropriate services in order for them to live independently, which ultimately results in resentment of the disabled person by their families (Johanne Powell being the most recent example of this).

I honestly don’t know if I can change any of this stuff for the better.

But what I do know is that there’s a box of chocolates in the spare room, and while it won’t exactly change the world, at least I’ll go to bed on a (sugar) high.

When no words are coming, what do you do? Write a poem about it!

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No. Words. Are. Coming. Lately.

As I sit at my laptop, waiting for the words to come,

Thoughts crash together in my brain, becoming mangled and broken;

I try to stay calm and serene, but the right words elude me,

I feel they are watching me from a comfortable distance

Laughing and mocking me. I feel the frustration rising within.

It burns my soul and crushes my being. The words must come,

Without them I am nothing. I can say nothing, I can’t be defined

And if this is the case, can I really exist? So I persevere

Writing bullshit and nonsense and shaking my head,

This is not good enough. Who will this offend? Who can I impress?

Writing is not a choice, it’s a terrible infliction

That follows the victim forever, strangles them, drags them down.

And yet I can’t fight the urge to keep trying

To create something special, something small, in a world

Where the search for perfection threatens to destroy our humanity.

I take a deep breath and say,

I am not perfect; I am shattered and broken,

But I will continue to try, to search for the unattainable,

Because the search for the right words is as important as the finding,

And when they are found, there will be nothing more to say.