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Budget 2020 (Poem)

In case you are wondering what triggered this  poem, there was no further investment into Personal Assistant Services in Budget 2020.

You want us to  be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.

See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now  we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.

And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.

Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.

The soft approach isn’t working,
and while I hate to curse
Your fucking lack  of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.

And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

Shattered (Short Story)

(This short story was written in aid of World Suicide Prevention Day which takes place each year on 10th September. So I’m a little late. I apologise if this story upsets anyone but it doesn’t belong to me, it belongs to the *fictional* character)

 

Méabh smoothed out her silk olive green shirt. It looked baggier on her now, just as she had originally intended it to look when she first bought it. Her silver pendant, with two little pictures of the kids inside, hung loosely around her neck, giving her a look of carefree sophistication. She tousled her hair with her right hand, noting that the persistent greys were more prominent than usual. When was the last time she’d dyed it? She couldn’t remember. This inability to remember things, to retain basic pieces of information was starting to grate on Méabh. Once she had prided herself on being unnaturally organised, taking the jibes from Niamh and Diarmuid as good old-fashioned banter. Now, she felt that things were slipping away from her, but she couldn’t articulate what these things were. Time, her memory, her sanity? She tugged the skin on her face towards her cheekbones. This is what I look like now, she thought, an old turkey with excess skin like a sucked-out stomach after liposuction. That’s how she felt too: sucked out, hollowed, empty.

She threw the dishevelled duvet over the king-sized double bed, Conor’s suggestion of course. What an idiot I was, she thought, smoothing over the corners, just like she felt she was constantly smoothing over their marriage. They’d bought it a few years before she’d began sleeping in the spare room, when the children were still small. She had thought that such an extravagant purchase was a statement of where they were in the world, a sign that their marriage could be rescued. It was certainly a far cry from the old, springy mattress she’d slept on as a child, turning and readjusting so that the springs didn’t rub against her ribs. Conor had promised her that she would never be so neglected again, that she would always have food and a roof over her head. And she strove to be a better mother than her own mum ever was.

Nobody could dare accuse Méabh of being anything less than a wonderful, doting mum. It was well- known among the locals of Tullamore how incredibly organised and talented she was: she had always donated baked goodies to the kids’ school cake sales made from scratch; she had presided over the Parent’s council in Tullamore College for seven consecutive years; for sixteen years she ferried the kids to their after-school activities day after day, and was never without a kind word and a warm smile for those she met on the way. Whenever she spoke of Niamh and Diarmuid, her heart seemed to swell with pride. Diarmuid had just a few weeks before moved up to Dublin to be with his big sister in UCD. She was studying Arts while her brother wanted to be a doctor, just like his father. Indeed, he was becoming increasingly like his father, reflected Méabh: cold, arrogant and unfeeling.
Now that the children had flown the nest, the grim reality of how toxic their marriage had become was truly beginning to take hold. Conor had never been cruel to her in front of the children: distant, certainly, but until lately he had never descended to the depths of calling her names, putting her down, criticising her ironing, her cleaning efforts, her cooking. Perhaps, reflected Meabh, that was owing to the fact that there was always the children to act as a buffer between them. She hated herself for putting them in that position, and became disheartened often by how easily they had accepted it. Just like her Sunday roast dinners with the gravy made from scratch, watching her children referee between her and Conor had become a part of their lives.

At precisely five to eleven, the letterbox jangled. She heard the heavy thud onto the mat in the hall. Another pile of final notices, no doubt. Lately her post seemed to come in clumps, a collection of demanding letters and legal threats. For a moment, Méabh allowed herself to fill with self-pity. This is not how I imagined life at fifty, she thought, rubbing her temples. She’d hoped for a career of her own, something in fashion perhaps, something that would solidify her purpose. Now that the kids were gone and her marriage was on the rocks, she felt deprived of the opportunity to make her own identity. But she was just doing what women did at that time: she raised the children while Conor focused on his career. She hadn’t resented him for it, then.

She sat on the bed, staring into space, hoping to hypnotise herself into some kind of mental paralysis. Her heart was racing, as if she was about to get caught doing something wrong, as if someone would burst through her bedroom door and unmask her as the imposter that she knew deep down she was. Using the palms of her hands, she pushed herself upwards, feeling her cold blood rush to her feet. She didn’t have time to sit around moping. Those buns would not bring themselves to the school coffee morning.

Few things lifted Méabh’s spirits these days like seeing her pristine kitchen glow in the orange September light. The light shone from the marbled grey countertops and the black presses were immaculately clean. Méabh was proud that, at first glance, no-one would be able to tell from looking at her kitchen that she was a keen baker. Once she had all the ingredients organised, she loved to bake: to feel the flour clumping between her fingers, to watch the eggs, butter and sugar creaming in the mixer. The tubberware box in the corner of the counter was the reward for her efforts. Everyone always complimented her on her buns, her cooking. In fact, it seemed that everyone in Tullamore was envious of her full stop. Meabh acknowledged this without arrogance. She knew that her address of Clonminch Road was not merely her home but a status symbol, a statement about her place in life. Once she and Conor separated, where would she end up? What would her new address say about her?

Finally, she grabbed the keys to the Merc and trotted out of the house, wearing her shiny black high heels. She hopped into the car, carefully placing the box beside her on the seat. For a second, she stared into space, trying to remember why she was in the car. The kids probably wouldn’t have approved of her continuing to support school activities but, as she reflected, at least they were not here to suffer the embarrassment of her. Suddenly, her heart froze. Had Niamh really not been home for a whole weekend since the beginning of May, four months beforehand? Meabh was saddened by this realisation, but she knew why. In fact, she and her daughter had only spoke about it two weeks ago.

‘I don’t live there anymore, mam,’ Niamh had said on the phone, ‘so there’s no point in me coming home. Anyway, it doesn’t feel like home, you know what I mean?’ Niamh’s honesty had shaken her. Meabh had always thought that whatever was going on between her and Conor, she had always ensured that the kids felt secure and loved. She also hadn’t bargained for how much she’d miss her only daughter and their cups of hot chocolate in front of the Late Late Show every Friday night, going shopping in Athlone on Saturday afternoons, going for dinner in the Court every Sunday. Once, she had even seen Niamh not only as her daughter but her best friend. Alas, Méabh had let her down somehow. Niamh came from a different generation, Meabh reflected; she didn’t need the approval of a man or any kind of partner to justify her existence. That’s where I went wrong, she thought as she started the car.

As she pulled into the parking space, Meabh felt ashamed. I’ve no right to be here, she thought, watching the other mums walk in together, laughing and smiling. She envied how carefree they all seemed to be, some of them even wearing long shapeless t-shirts and plimsolls. Regina Hogan always came to these events in her tracksuit bottoms, the grey one with the red paint down the left leg. It annoyed Meabh that she never made an effort; some days, the woman barely looked presentable. And yet, Meabh noticed, Regina seemed happy. In fact, she was everywhere: at fundraisers, community events, sponsored walks. She waved as Meabh got out of the car, revealing a wet patch of sweat under her arm.

‘Well, pet,’ she drawled as Meabh walked towards her. ‘Aren’t you very good to take time out of your busy schedule and come up here with us commoners, eh? They look gorgeous,’ she said, opening the box in Meabh’s hands, then leant in closer to her, releasing a raspy laugh. ‘I bought mine in Flynn’s this morning. Was never one for this baking lark.’

‘No.’

‘Not for me. I’m an ‘ater, not a baker. We can’t all be as talented as you!’

Méabh was becoming irritated now. ‘I wonder how many will turn up,’ she said, quickening her pace, her high heels clacking behind her. The smell of old gym sweat, of cheap deodorant and cheese and onion crisps hit her as she opened the door, holding it open for Regina.

‘Thanks, pet,’ Regina smiled at her, flashing her yellow- brown teeth. ‘By the way, haven’t seen you working in the shop for a while. You still there?’

‘No.’ Méabh was tired. ‘Ah, it was just something to get me out of the house now that the kids are gone. Turns out I have plenty to keep me occupied!’ She held up the buns as Regina smiled and walked down the corridor towards the gym. It surprised her that Regina had noticed that she was not working in Centra anymore. Did anyone else notice, she wondered?

She wished she had the courage to tell people the real reason: that up until a few weeks ago, Méabh had spent the majority of every day in her pyjamas. That she had found every single task to be physically exhausting, from brushing her teeth to making a cup of tea. Conor had been gone for a month on one of his so-called business trips to Dubai, but Méabh wasn’t stupid. She knew that there was another woman involved, and that there had been for a long time. When she was in the house, alone, there didn’t seem any point in cleaning, cooking proper meals; mostly she’d lived on beans on toast or micro meals. It wasn’t her usual style: Meabh had once been a great believer in the benefits of healthy eating.

Frightened that she was starting to lose her mind, Meabh had gone to the doctor two days beforehand. She knew she wasn’t right: she’d even had two cigarettes the day before, despite not having smoked in nearly thirty years. It had killed her to confess that to the doctor.
I don’t feel like myself at all, she’d said.
Dr Murphy rubbed his head with his pen. You were fifty last week, yes?
Meabh had been insulted. I don’t think that’s relevant, Doctor.
Perhaps it’s all part of the menopause, he said, looking blankly at the screen in front of him. You ever been on Prozac, or Valium? It might help. Do you feel anxious? Meabh conceded that she did, that as long as she could remember, she had always been what her mother called ‘highly strung’.
Calm down, he’d said to her. Try some mindfulness or meditation. There’s apps for everything these days. He wrote her a script for Valium and held it out to her.
One more thing, he said, still distracted by the computer. Have you ever had unwanted thoughts? Méabh had frozen, feeling as if Dr Murphy had caught her unaware in complete nakedness. She felt invaded, exposed.
No, she’d replied, giving a small laugh at the absurdity of the idea, then, as an attempt to inject some humour into the tenseness, she added: Don’t worry, I love myself too much to do away with myself! She’d snatched the prescription off the table, not looking back as she’d walked out, holding her head high.

Now, Méabh sat in the car, watching the windscreen wipers move back and forth, squeaking slightly as they rubbed against the window. Squeak swish, squeak swish. This noise, she reflected, represented where she was right now: just going back and forth, going through the motions but not actually going anywhere. She was tired from her efforts of making polite conversation with other parents when really what she had wanted to do was crawl back into bed. The rain pelted loudly against her window, demanding to be let in. The six foot walk to her front door seemed impossible, then. If she got up, walked over and turned the key, she would then have to make dinner. Then she would have to clean up after and be in bed before he came in. And she would be doing this same thing, over and over, until they separated and she ended up in a grotty little bedsit on Church Street. That was assuming she could afford the rent and bills, of course, not to mention the bills that were waiting for her now, neatly stacked on the pristine counter.

Méabh’s entire body felt heavy.

This is it
, she said. I cannot do this anymore.

She turned on the radio in anticipation of having to drown out the floods of tears that she wished she could cry. Still she felt nothing. Not sadness, not anger: nothing. She opened the box of Valium and took one, and told herself she felt better. Then she took another, and another. The loud radio hummed around her, like a choral chorus, hemming her in:

…and it’s not a cry, that you hear at night;
It’s not someone who’s seen the light,
It’s a cold and it’s a broken halleluiah….

The music became increasingly muffled. Then, silence, the silence she’d been looking for. Diarmuid would find her slouched over the steering wheel, her silver pendant broken and the two kids grinning up at her from her lap. In these photos, they would never get older, and neither would she.

Absolutely shocking, they would say, later, after the news broke. She had so much going for her. Those beautiful children, God love them.
How’s Diarmuid going to cope now? Sure a couple more suited to each other I’d never seen!
…and she was so talented and all, ah wasn’t she just a lady?
Now Ann Kelly told me the other day she thought she might’ve got fired from that shop that she was working at…
Sure what is this town coming to, everyone killing themselves, what is the story?

Méabh would soon be yesterday’s news, and her neighbours would go on as before: smiling at each other, giving a friendly wave, or avoiding each other’s gaze, hoping nobody would ever discover their pain. All they had now was pointless speculation, and a ‘For Sale’ sign where she used to live.

Adventures Down Under

(I think this blog should sufficiently explain my absence over the last two months)

 

When I was sixteen and in Transition Year, our class acquired a new student. Her name was Melissah and she was Australian. As we got to know each other better, she told me more and more about Oz. My imagination went into overdrive as she spoke about diving in the Coral Reef and hanging out on the sunkissed beaches. It sounded like an extended episode of Home and Away and I knew that before I lay on my deathbed that I would have to see it for myself.

Melissah (‘Missy’) invited me and a few of the other girls I was friends with in school back to Australia with her, to partake in an exchange programme, but when I asked my parents, they looked at me as if I’d asked to remortgage the house. Possibly the same look I would give my own darling daughter if she randomly came home one day, at the age of sixteen, and said she was going to Australia for the summer with her pals. Sure, hun, whatever you think yourself! Get smashing that piggy-bank!

There would always be an excuse/reason for me not to go to Australia. First I had college, then I got a job straightaway with Offaly CIL, then I got married and had our beautiful daughter. I had become resigned to the idea that Australia would only ever be a pipe dream when on the 11 December 2018, as I was en route to a meeting in Carmichael House in Dublin, my husband rang to say that the flights had been booked for the second of July 2019 and to check my email to see if my Visa had come through. I don’t remember much about that meeting as I spent the entire two hours trying to be professional and not burst from uncontrollable excitement!

Having the trip of a lifetime to look forward to certainly helped me through what has been a hectic year so far. On top of trying to keep my writing going, I somehow completed the Certificate in Disability Studies in NUI Maynooth and gave two presentations about motherhood and disability in NUI Galway. I’m glad I was so busy this year because it meant that I felt like I earned the break. Before leaving, there was much deliberation over whether I should bring my electric wheelchair on the flight. To clarify for those who don’t know me as a person: my wheelchair is like a car to me because I cannot drive. It is a crucial piece of equipment in maximising my independence. Ultimately, however, we decided it was safer to leave it at home in one piece after reading several horror stories about mishandled electric wheelchairs in various airports.

Of course, a massive part of our decision to go over to Australia – and Perth specifically – was because my darling sister Alexandra has lived there for the last eight years. Alex moved to Oz two weeks after I discovered I was pregnant with Ali. When Alex heard we were coming, she was delighted and she generously offered for us to stay with her in her ‘little’ house for five weeks. This made the trip much more affordable for us and we got on without any major rows; at least we’re still speaking! I have to say she treated us really well – cooked us yummy dinners, drove us here, there and everywhere and brought Alison on days out when we were too wrecked to parent, or go anywhere. I am indebted to her and her partner Colm for these reasons alone.

The first thing I learned about Australia on our arrival on 4 July is that everything is so spread out. What I mean by that is that unless you are wealthy enough to live bang in the middle of Perth, you will need a car. Alex lives in Heathridge and while the nearest shop is five minutes’ drive away, it would probably take about forty-five minutes to walk. However, having seen the M50 of late, driving in Oz is relatively simple: people still drive on the left hand side and the roads are in excellent condition with few windy, unkempt roads. You can even cut across dual carriageways at designated points to turn around if necessary, or to cut to your destination.

Our first port of call was to the Joonalup shopping centre and the arcade, as we were unfit to do much else. On the Friday, we ventured into Perth to see Scitech, which was fully wheelchair accessible. It has interesting experiments and equipment and Ali loved it. After that, we went for an evening stroll in King’s Park, where we were overwhelmed by the magnificent view of Perth city touching the winter skyline. We saw the war memorial and picked up a nice parking fine for parking in an accessible parking space without a permit. Afterwards we applied for a wheelchair parking permit which was granted and issued within a few days. That wouldn’t happen in Ireland!

On the Saturday we went to Caversham Wildlife Park where we saw the kangaroos up close.  Their legs move as if operated by springs! We also saw koalas, parrots and llamas. There was a cowboy show and Alison and her new friend Charlie got to milk the cows. We got our photo taken with a wombat (who clearly hadn’t taken a shower in some time) and a koala. Those koalas have sharp claws, and are much heavier than they look! Still, it was an absolute honour to get so close to one.

The following day, we took it easy and watched the sunset on Burns’ Beach, a five minute drive from Alex’s house. The beach itself was spectacular and there was even a little playground for Ali and Charlie to play in. I noticed throughout our holiday that there was always a playground nearby, and not only were they clean and well-maintained, they tended to be physically challenging too: as well as the usual slides and swings, many of the parks we went to including in Mullaloo, Fremantle, Hillarys and especially the parks along Scarborough beach also had climbing walls, monkeybars and obstacle courses. Great for keeping the kids fit!

Our day out in Fremantle was extremely enjoyable. We went on a tour to Fremantle prison, which was open up until the 1980s. We saw where prisoners were hanged and as a disability activist I was pleased to hear that even wheelchair using offenders were accommodated in receiving this gruesome punishment! (Equality for all and all that). Afterwards Ali enjoyed her first taste of ice-skating in Fremantle’s ‘Winter Wonderland’. It took a few minutes but she eventually got the hang of it, with a little help from auntie Alex!

The highlight of the holiday was undoubtedly the road trip to Albany. Five hour drive down south through the bush, us three and Alex in the car. ‘Not much to see’ said Alex, and she was right: miles and miles of blackening trees, some of them with the bark burned off, and the occasional kangaroo corpse on the side of the road, which was devastating to see. Albany is a breathtaking place. After you see it, Bundoran and Kerry don’t seem to measure up! We stayed in a motel beside Middleton Beach, within walking distance of a beachside restaurant and another well-maintained playground. In the evenings we could have our dinner and chill out while we watched Alison play. The atmosphere was so relaxed out in comparison with Perth.

playground on middleton beach

Ali on Middleton Beach

From Albany we headed back north to Denmark, a quaint little town. We had booked a cabin to stay in called “The Green Leaves Cabin”. I won’t lie: when I heard cabin, I had visions of something akin to a treehouse: damp, airy and cold. From the outside, it seemed rather quaint but on the inside… I don’t think it’s an exaggeration to say that in many ways, it’s nicer than my own house. The living area was enormous, with a wood-burning stove and bookshelves stacked with contemporary books and board games. I cheated on the second night in Denmark by initiating a game of Scrabble and taking advantage by knowing where on the board to place my tiles to get the highest points (thank you, mum). There was also a plentiful DVD collection and the beds even had electric blankets! In the morning time, the birds congregated impatiently on the balcony, adamant that they wouldn’t leave until they were fed. The magpies were the most aggressive! The more we fed them, the more birds appeared. It was surreal. On the coffee table there was a little diary where people who had stayed there before wrote about their experiences. It seemed that everyone who had stayed there found it to be a truly magical place.

In Denmark, we did the Tree Top Walk in the Valley of the Giants. If you’re squeamish with heights, or walking on rickety steel bridges, then perhaps this is not for you as this attraction incorporates both. The Tree Top  Walk was wheelchair accessible, although I did find myself wondering how safe it would’ve been in my normal everyday Storm powerchair as opposed to the fold-up one I was using in Australia; the bridges buckled a little under the weight of my skimpy powerchair and the bridge itself was narrow – little wider than the wheelchair . As you walk up the bridge, you can see the magnificent trees below you. Some of them are enormous. One thing I noticed, as I observed in the John Forrest National Park, that in winter many trees lose their bark as well as their leaves. Some of the trees were also black, scorched from the hot sun during the previous summer.

me in valley of giants

Me in the Valley of Giants. Note how narrow the bridge is!

To complete our road trip, on the Friday night we stayed in Margaret River. The accommodation was not as nice as the Green Leaves (and after staying there, I don’t think that any accommodation will measure up ever again). It was a long three hour drive from Denmark, so to break up the journey we simply had to stop in to a cheese factory, a toffee factory, the Margaret River Chocolate Factory (imagine me a la Homer Simpson in The Land of Chocolate) and various little wineries (only samples, mind: Alex was driving. Takeaway was bought, however, in some places!). We didn’t get to explore much of the outdoors that evening as it was lashing rain but still it seemed a nice little place. The next morning we saw massive swells in the sea. Not exactly safe for surfing!

One thing I I had been looking forward to that ended up being a massive disappointment was the Bus Tour of Perth. It was ridiculously expensive for what it was ($150 or approximately €100 for three adults and two kids). When I looked at it online, I had visions of it being somewhat interactive like the Dublin City tours. I’ve never been on one but I’ve seen them whizzing past Trinity College, with an animated tour guide giving live commentary. On the Perth tour bus, however, the commentary is delivered via headphones, which makes for an interesting yet solitary experience. We sat on the top deck so that we could see everything but were absolutely freezing by the end of the two hour tour. For the last section of the tour, we sat downstairs. When I was sitting in my wheelchair in the designated space, I noticed that the slot for my headphones was located approximately fifty centimetres above my head – not accessible unless you’re Stretch Armstrong or you have somebody with you (perhaps disabled people in Australia don’t travel alone? I don’t know).

I can honestly say that I got to see everything I wanted to see, including the truly beautiful Rottnest Island. What was not so beautiful, alas, was the ferry ride on the way over and back. I felt truly pathetic, as the ride only lasted forty-five minutes each way, but I can now say that I know the real meaning of ‘choppy’. At one stage it felt like I was being thrashed around in an oversized washing machine. Blood-y hell. Reader, I am not ashamed to say that I puked, and dry-heaved, quite a lot in those forty-five minutes. You would need a stomach of steel not to feel a little unwell. It was worthwhile, thankfully. It is such a beautiful, laid-back place, dissimilar to any of the other places we visited. The main mode of transport is the humble bicycle and my heart swelled with pride watching little and big Ali cycle approximately fifteen kilometres together, side by side. On the island, I saw my first ever live quokka. They rambled all over the islands, waiting for you to take selfies with them.

alex and ali on rottnest

Two Alis on Rottnest Island

We packed so much into our five and a half weeks that even still, my body is still trying to regulate itself. From going to the ‘Gold Class’ cinema in Joonalup to bowling, we were rarely sitting around doing nothing. One evening we took a boat tour around the Perth basin and Ali even got to ‘drive’ the boat for a few minutes. Quad-biking across the sand dunes in Lancelin was a particularly exhilarating experience. It was tremendous fun. We were guided across the dunes by professional guides who led us down a couple of particularly steep slopes (the first one came rather by surprise and I’d say you could hear me screaming back here in Ireland!)  I wouldn’t say it’s a wheelchair accessible activity though, which is why I sat in the car while the others went sandboarding. It was definitely one of the highlights of the trip.

jay and me on quad in lancelin

Quadding at Lancelin Sand Dunes

Even as I write this, I still can’t believe that I’m home from the dream holiday that I’d been mentally planning for nearly twenty years. Although I missed home (specifically, the people at home) it was still hard to say goodbye to Alex and the country which will always have a piece my heart. Now, although I love the bright evenings here (it got dark at six in the evening in Oz as it was winter) I find myself missing the sound of busy crickets, the sweet smell of eucalyptus and the open highways (freeways? Not sure what the difference is?) If this is something that’s on your bucket list, do it. You know the way that sometimes reality doesn’t live up to your dreams? Yes? This isn’t like that at all. It truly was a once-in-a-lifetime experience that I will never forget.

Finally ( and I write this paragraph specifically for my wobbly tribe) what worried me most prior to the trip was how we’d manage in the airports, especially in Dubai where our stopover was only two-and-a-half hours. I chickened out of taking my own electric chair, so I was in a manual chair in the airport. The service we got when we landed in Dubai both times was excellent. Really top class. The staff were amazing, pleasant and brought us to our connecting flight promptly, even offering to stop in duty-free on the way. I was searched in security by a female guard in a little private booth. When we arrived back into Dublin after our trip, I was helped off the plane and brought into arrivals by a member of staff in an airport chair. It took forty minutes for my own wheelchair to come out on the oversized luggage belt (it came out upside down). This is why many of us are nervous of flying with our wheelchairs!)

And now, back to writing and to reality… and to continuing the job hunt….

Silent Footsteps

I’ve been trying to get out  of the house more lately. It’s good for my mood and my mental health. Luckily, Tullamore town park is only around the corner from us so on Friday evening, Alison and I walked down, as we often do. I had read in the paper that there was to be a gathering that evening for families who had lost loved ones to suicide, and that those affected had been invited to bring a pair of shoes with them to represent those who had died so tragically. Thinking it’d be a tiny affair (Tullamore is no city) we bought a pair of runners to represent my childhood neighbour Paul and another childhood friend, Frank. When we arrived at the park, I was taken aback by the depressingly sizable crowd in front of us. I had explained to Alison that we were honouring those who had died.

“Like my nannies?” she’d asked. (She loves hearing about her nannies).

“Er, not exactly,” I replied.  What the hell was I doing, bringing a child to this event? “We’re remembering people who died because they were just tired of life. There’s sickness of the body, and sickness of the mind. Sometimes your mind gets so sick that it believes it can’t get better… and sometimes it kills people.”

I reflected upon my pathetic explanation. Don’t explanations like mine only serve to perpetuate the problem, that we have become so ashamed to vocalise our feelings that sometimes we just… don’t? We don’t want to be a burden, so we spend day after day alone, saying nothing to anybody. We worry that we won’t be believed. Or we keep quiet because we know Mrs So-and-so is going through their own shit and she has it way worse. Whoever coined the phrase “first-world problems” should be shot.

As I listened to the prayers, my eye wandered to the line of shoes in front of me. The line was so long that I couldn’t see the end of it. That frightened me. These shoes belonged to people in our town – ordinary people with ordinary lives – who were living with a massive gap in their lives. Suddenly, I became overwhelmed with an emotion that almost suffocated me. It was sadness, mixed with pain and self-hatred. Suddenly I realised why I had subconsciously wanted to be there, even though I wasn’t representing an immediate family member.

I was representing… me.

It’s almost been five years since I had deep, suicidal thoughts. Five years since I took a handful of pills, despising my own cowardice when I couldn’t bring myself to take enough to kill myself. Five years since the night when I told my husband I didn’t love him and wouldn’t he be better off without me and didn’t Ali deserve better. Five years since I bashed and cut every inch of myself in a bout of self-hatred so inexplicable that I can’t explain it accurately now that I am calm. In my eyes, I had failed. I was a crap parent, and shite at my job. I felt constantly tired, even though “I only had one child”.  Some people couldn’t even have children and here I was acting like an unbelievable knob, ungrateful for what I had. All I had wanted was to be dead.

And sitting there, looking at the shoes, part of the reason why suddenly occurred to me. We have distanced ourselves from each other. The cost of living is ridiculous, so in an average household both partners must work, often ludicrous hours. Where is the time to have a meaningless natter with your neighbours? And speaking of neighbours, we don’t know our neighbours anymore (stupid housing crisis). We keep ourselves to ourselves. My parents bought a house back in the ‘eighties and that was our forever home, but people can’t do that anymore. And we knew most of our neighbours; in fact, all of us kids had best friends who were also our neighbours. People are not able to put down roots: not those in houses where the rents are constantly climbing, and certainly not those in hostels or hotel rooms.

I began thinking: if things are so bad (and make no mistake – we are beyond crisis point here) then why are we too proud to reach out to each other? Why are we wasting time trying to  pretend we have the perfect lives on social media when we need to be talking more, empathising more, encouraging each other more? When will we learn that the perfect life we aspire to has been airbrushed into existence, and that happiness is more important than perfection? And why, in spite of the “It’s ok to be not oks” and “mental health is real healths” are we still not taking it seriously?

I resolve to take mental health more seriously because those empty shoes frighten me. So let’s go for coffee. Come over for dinner, or chocolate – or both. If you ever need to chat, I will not judge. I will listen as best as I can.

Don’t assume that what you left unsaid will be heard. Trust me, people will be glad you said it.

It’s those unsaid words that haunt us the most in the silence.

 

 

Post Election Manifesto (Poem)

 

You knocked on our doors wearing a smile,
Said that you wanted to talk for a while,
Assured us that you understood our pain
and that in trusting in you, we had everything to gain.
Then as the door closed with us safe behind
Did we really remain in your minds?
Could you really know what our smiles were hiding
As your manifestos through our letterboxes you were sliding?

Black eyes by a fist who wanted to show who was boss;
An empty cot owned by a mother suffering a loss;
A child who didn’t have breakfast that day;
A young man who can’t make those voices go away;
A lonely but beautiful lady who can’t seem to stop drinking –
When you were ringing those doorbells
What were you thinking?
How were you going to gain our trust
In an Ireland viewed by many as cold and unjust?

You could promise the moon and the stars
But we won’t believe you’re not running up your tab at the bar.
While you attest that things will change in your name
for many of us our reality stays the same,
We still struggle to keep the roofs over our heads
(the lucky of us that is – spare a thought for those in hostel beds),
while working our fingers down to the bone
and spending our evenings feeling overwhelmed and alone.

And that – mo chara – is the biggest problem right there –
That people these days just don’t seem to care!
Young people in nursing homes, families with nothing to eat,
Thousands of people out on the street!
For a country obsessed with unity, all we do is divide –
Never has the gap between ‘rich’ and ‘poor’ been so wide.
And it’s so hard to believe that the country is broke
When the powers that be get six-figure paychecks
(unlike ordinary folk).

So if you are in government, and you’re reading this crap,
It’s time to stop letting Bertie and Enda take the rap,
The future of this country rests in your hands
And we’re counting on you to meet our demands.
Don’t say it’s impossible, that your hands are tied,
Instead think of the tears your people have cried.
One person can’t change the world, it’s true,
But if you speak up for the voiceless, others will too
And maybe, just maybe, our faith in Ireland will renew.

 

I know what I want – and I want it now!

Today is a mucky, awful day. It’s been leaking all morning, and probably will be for the rest of the week, according to forecasts. Nonetheless, I’ve been out of the house. My Personal Assistant and I have already been to the gym today, which not only helps me keep fit but also ensures that a hermit writer such as my good self does not become institutionalised within my four walls. Such a normal, mundane thing, isn’t it, going to the gym? Some dedicated people (read nutcases) even make time to go at six or seven in the morning before work. Often, if I go slightly later in the day (early afternoon) I meet other mums sweating it out before the kids barge in from school.

How wonderful it is to have that choice – to come and go as you please. To go to the gym, or to sit in a café salivating at a large chocolate éclair. To go to bed early and read, or to stay up until 4am watching the latest series on Netflix. The great thing about life is that it is full of choices. We make choices every day – mundane ones like what to have for dinner, and exciting ones like going travelling in Australia(!) – and many of us never give them a second thought.  And hell, why would we? Life is for living, right? We’re going to be dead long enough, aren’t we?

I have not been feeling too good in myself lately (hence all the extra exercise – it boosts my mood) because I know what I want. I want to be a writer, and even though I’ve spent hours this week applying for other jobs, I know that writing is the only profession that makes me feel whole, competent and useful. I love it because it’s a skill that can constantly be worked on, improved upon and polished. However it is so hard to focus solely on writing when I know that disabled people are collectively still fighting for the right to do what they want. And often these things do not include something as ambitious as going to Australia. I’ve heard people comment on how nice it would be to go for coffee once a week with friends, maybe go away for a night or two, breathe in new surroundings. We as a family often go for day trips, a drive somewhere, a change of scenery. It’s a must for your mental health!

During times when I myself feel low and inadequate, my mind wanders to those who don’t even choose what times they get out of bed, who can’t spontaneously decide to have a shower that morning, let alone leave the house to do their own shopping or socialise. If this was my reality, I can only imagine that my thoughts would be very dark indeed. To me, this isn’t living – it’s merely existing. And how many people in Ireland are  merely existing?

I heard someone recently say that they were grateful for the services they receive. And hey, there’s nothing wrong with a bit of gratitude, eh? After all, as a parent I have instilled in my daughter that we should always be grateful for what we have, that we should always be polite and say please and thank you. I am guilty of being grateful. I am especially grateful to my Personal Assistants for the work they do in helping me be independent. In fact I am so grateful that if my service were to be cut in the morning, that I would probably say something like “well there are people out there who need it more than I do, and sure can’t I manage, and I can still get taxis and buses and stuff”. Firstly, if I didn’t have a Personal Assistant, I guarantee that I would not have the energy to write rambling blogs such as this one. Secondly, my attitude of comparing my own needs to the needs of others perpetuates ableism and creates a hierarchy of disability. Instead of using the PA Service to achieve equality, it seems that those who “need” it more, such as those who need help with personal care, are prioritised. And logically, there is nothing wrong with this. However, this perception, exacerbated by the constant talk of lack of finances since 2008, has led disabled people themselves to lower their own expectations. And talking out is dangerous because if you are perceived to be a bit of an upstart, you risk having whatever little you have being removed from you.

This is the reality within a country that does not yet recognise Personal Assistance as a right. The right to a Personal Assistant so that a disabled person can live in whatever way they choose is currently not recognised in Irish law. Now that we have ratified this famous UN Convention on the Rights of People with Disabilities (UNCRPD) that I have harped on about more than once, the absence of legislation protecting our right to access Personal Assistance is no longer acceptable. Oh, and just to clarify, home help and Personal Assistance are separate services according to Article 19, so having access to one does not justify the denial of access to the other. In case you don’t believe me, I quote directly: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” (UNCRPD, emphasis mine).

A year ago, I had the absolute honour of being co-opted onto the board of an organisation called Center for Independent Living Carmichael House. Last September, we rebranded as Independent Living Movement Ireland  (ILMI). Today, ILMI launched a booklet entitled “Achieving a Right to Personal Assistance in Ireland” in collaboration with the forward-thinking Centre of Disability Law and Policy in NUI Galway, as part of their Disability Legal Information Clinic. It is a positive step towards creating an Ireland that eradicates the notion of disabled person as a medical “patient” and moves instead towards recognising Personal Assistance as a social issue and a basic human right. It fills me with hope that perceptions will change, sooner rather than later.

I want my right to Independent Living to be recognised. Before I die would be brilliant. Then I can focus on living my best life, whatever that may be.

For more information on the vital work of ILMI, or to join our  #PASNow campaign, please visit http://www.ilmi.ie.

Poem: What is Mum?

(In honour of Maternal Mental Health Month)

What is mum but the clay and the moulds
Through which our whole worlds are shaped?
What is mum? The vessel in which
Her children she selflessly creates.
A mum should be gentle and loving,
Firm but understanding, strict yet kind.
Mum’s the one to which we all look to
For love, compassion and empathy to find.

What is mum but this irreplaceable angel
Who seems to be able to juggle it all?
Who rarely seems to get angry or sad
Who loves her children, warts and all?
She carries out her motherly duties,
Her small smile positioned for all to see –
There are always haters and begrudgers
Itching to unveil the real bitch she can be.

What is mum on our island of Ireland,
Where she is no longer shackled to the sink
and yet she cannot find a high-paying job
to make the costs of childcare considerably shrink.
And yet if she chooses to stay home with the sprogs
she’s accused of arsing around –
But how much of their little lives will she miss in the office?
No matter how she tries, she never finds that middle ground.

What is mum but the smelly worn out old sponge
Incapable of holding back her tears any longer?
The woman who beats herself up for all her mistakes
And wishes she could be that little bit stronger?
The woman who worries, overanalyses and criticises
Not knowing that she’s actually great –
She pushes down the hurt, blocks out the voices
That constantly serve to mock and berate.

You see, mums are incredible
But, alas, they’re mere humans too,
And believe me, they are drowning in their own expectations
So they certainly don’t need more added by you.
Every mother out there who loves their kids
Is undoubtedly doing her best,
So with that in mind, leave callousness behind
and let’s give this whole judgemental lark a rest.

Because mothers will never be perfect
(as much as this pains me to say)
but how they perform in their duties
will be down to society at the end of the day.
So let’s not put mums on a pedestal
Where they will feel isolated and alone –
And instead listen, encourage, support and love each other
Whether it’s over coffee, WhatsApp or a natter on the phone.

What is mum?
Only what we allow
Mum to become.

Ten Years On

 

Ten years on,
and how should I feel
other than numb,
Dumb
Lost for words?
I remember that day
It prickles the soul –
The ringing of an office phone
The air was as grey as a gravestone.
A vital organ
Viciously removed
Left me gasping for air.
It didn’t seem fair –
Sure hadn’t we just spoken
A few days before?
It couldn’t be right
And try as I might
I just couldn’t believe
You were
Dead –
Taken by the angels, they said
As this somehow made it okay
That you wouldn’t awaken to see the next day.

Ten years on, and my heart still stops
When Carly Simon is piping through the shops.
A whiff of Samsara, the taste of a good stew
Deceives my mind into looking for you.
and I know after ten years things tend to look rosy
when in fact we both know that things weren’t always cosy
Between us. But I have learned
to abandon that baggage in the lost and found –
It can get very heavy carrying it around.

Ten years on
And I struggle with survivor’s guilt and what-ifs
The empty chair in the corner of my eye
As I slipped on the gold ring
and cooed over the bassinet.
You left when I wanted more:
one more day, one more meal, one more moment.
The anger reverberated through my bones
Resenting you seemed the easiest option
(the right thing is never the easy thing).

Ten years on, and sorrow visits automatically
Like a summer tourist on a return booking.
And I don’t want to feel anything.
My bruised heart clams up, recovering
From past wounds. Time heals
and steals
precious moments.
You are the archetypal mother-in-law,
the doting nana,
The headcase ringing me ten times a day with trivial gossip.
That remains.
Light barges through the fog,
And I hurt:
I remember.

And ten years on
I realise
You can’t be dead
If, within my soul,
You have survived.

A Little Help

Dear whoever has the pleasure of reading this right now: forgive me for I have sinned; it has been almost two months since my last blog post. When I started college, I envisioned having more time to regale you all with trivial tales of my little life but being ever self-pushy and, well…me, that hasn’t happened. However I need to get this off my chest, otherwise I may implode.

I feel like I am living in a nightmare where everyone else is asleep but I am wide awake. I am slowly suffocating and there seems to be nothing I can do about it. Being in college for the last few months has confirmed to me that I live within a culture that constructs disability as a problem, that encourages us to blame ourselves for our shortcomings to deflect from the fact that we are oppressed and becoming increasingly voiceless.

Do you think I’ve lost the plot? I think so too.

For college, I decided to do my research essay on Independent Living in Ireland. May I say I wish I’d done it on something else, something I couldn’t give a crap about, because the more I read, the angrier I become. Sometimes I wonder would life be much easier if I didn’t know anything about the reality of Independent Living in Ireland. I wish I could shrug my shoulders, say ‘ah well, that’s just the way it is’.

But I can’t, so here I am.

Reader, I want you to think of your life as it is right now. Maybe you’re a student who studies hard during the week and parties harder at weekends. Perhaps you have the career you always dreamed of, one that brings you all over the world. You could be the proud parent of eight beautiful kids, secretly loving the chaos. Or maybe you’re a bit of a Lothario, with a different partner on your arm every ten minutes. It takes all sorts to  make this world. People with different views, dreams, outlooks, opinions. Everyone is different; that’s what makes us so interesting.

Now, imagine you only had control over your  life for forty-five minutes a day. Yup, forty-five minutes. Imagine you were the CEO of a multi-million euro company. How would you fly around the world to all your important meetings? Imagine you were a fun-loving, party-animal college student who had to go to bed at eight o’clock in the evening and get up at eight o’clock,  no exceptions.  Imagine being fully corpus mentis and expected to put up with an ‘expert’ who doesn’t know anything about you or your life making major decisions about how often you go to the toilet, how often you shower, what you can eat for your dinner.

Welcome to being disabled and needing assistance in 2019, and it’s like a parallel universe. Often it’s like looking at the world from inside a glass bubble, but not quite being able to reach it. It can get lonely in there, and suffocating. And no-one dares break that glass bubble in case someone gets hurt. It’s a world of risk assessments, of the professionals in the white coats, trying in vain to convince people that they truly believe in empowerment and equality. Oh, you can be empowered, so long as these experts are given the power to empower you. They will decide how much assistance you need based on some ticked boxes on a long form. If you have pride, this exercise will be particularly painful. Nobody likes to admit that they can’t do things by themselves. Isn’t the measure of a man/woman the ability to do things by himself/herself?

It’s best to be as compliant and agreeable as possible. No-one likes a troublemaker. And it’s not as though you making a stink is going to make any difference. Everyone knows what happened when Winston Smith from 1984 questioned the system. The system broke him, and in the end he was just grateful that Big Brother had saved his life, even though it was this system that made his life unbearable in the first place.

I fear I’m not making this point very well – Independent Living and freedom of choice is not a disability issue. It is a human rights issue, and one that effects every single one of us. How, you might ask. I don’t believe that ‘non-disabled’ people should support the disability movement just in case they become disabled one day, though I respect people who do have this mindset. I believe that if you don’t believe that the lives of disabled people are worth investing in, if you don’t quite think that every one of us, regardless of impairment, has something to offer, then you are perpetuating an idea of “them” and “us”.

I have postponed penning this blog for about a month now. I didn’t want to upset anyone. I don’t want to appear ungrateful for what I have. Then, this evening, I wondered how many people feel the same way I do, and are also afraid to say anything? How many of you out there are tired of fighting the system? How many of you have become apathetic because it’s really only a myth that the little people can win?

Apologies to those with screenreaders for the shouting here, but –  THESE ARE OUR LIVES.

We only get one life. Are we going to spend the rest of ours being told what to do, waiting to see who arrives to get us up out of bed? We don’t want to be taken care of, we want to be empowered, enabled! We are only going to live once so let’s fight for the things that really matter. Going for that cuppa and getting the cream bun that’s bad for us. Going clubbing and getting so roaring drunk that you end up with your head in the toilet at the end of the night. Taking that job in Dublin that you’ve always wanted. And above all, having the control and the assistance needed, as decided by you, to do those things that all of us should be taking for granted.

Until this is a reality, I don’t think we can afford to be complacent. After all, everyone needs a little help sometimes.

 

Shameless plug: Independent Living Movement Ireland are running a #PASNow Campaign, which calls for the definition and legislation of Personal Assistance. Achieving this would help bring Ireland in line with the UN Convention on the Rights of People with Disabilities. If you are interested, please visit http://www.ilmi.ie.

 

 

 

 

 

 

 

 

 

 

 

Healing Heart

It was late October when I got a call from a fellow activist. Now I have a rule that when someone from our diverse disability community asks for help, I try to accommodate where possible. This lady was ringing me because she was due to give a talk on disabled parenting the next day, but she had other commitments she’d forgotten about. Luckily, I had none scheduled. She was to give a talk to medical students in UCD.

“I’ve nothing prepared,” I said in a panic.

“You’ll be fine,” she replied. “Just wing it, be grand.”

And so against my better judgement, with no notes with me whatsoever, I found myself on the train to Dublin the next morning. I love the train; often it’s the only solitude I get when I spend most of every other day studying, writing or parenting. However, this time I could hear my own thoughts, and I didn’t like them. How come, almost seven years later, I still felt like I’d dodged a bullet, that I’d got away with doing something terrible? Why, after all this time, and all the happy memories I’d made, was there still that little sting, that tinge of unfairness lingering in the bottom of my soul?

Why do I still feel hard done by, robbed of what should have been such a happy time for my husband and I, the memories of bringing Alison home for the first time drenched in panic and fear? And is it, in fact, a bad idea to rake over the painful details of that time over and over again?

I arrived at UCD and after several phone calls, figured out where I needed to be (UCD is huge). I was met by the lecturer, Mary, who was absolutely lovely and very welcoming. We were both nervous because we didn’t know anything about each other.

“So,” she said, after the introductions, “how was your experience of maternity services?”

“Well,” I replied, in a matter of fact tone, “the physical care I received was excellent, but the attitudes of some of the staff were… horrendous!”

“Oh, brilliant!” she exclaimed, clasping her hands in delight. “Well, not for you, obviously, I’ve no doubt, but this is the type of discussion we need to be having with our future midwives and healthcare professionals. I want you to be frank and brutal as possible. Lay it all out there, all the gory details!” I smiled with pursed lips, hoping I wouldn’t shatter like a china vase. Of course I know that in this disability game, you need to have a thick skin. Otherwise you won’t survive – simple as.

The students came in and Mary introduced me, before disappearing to my horror (I hadn’t realised that I was considered to be a guest lecturer). To put the students at ease I told them there was nothing they couldn’t ask me and that I would be honest in my answers. Telling them that I was told that I was a danger to my own baby hurt in all the usual places, but we did have a bit of craic when I told them I knew better than the Public Health Nurse about Alison’s reflux. They seemed absolutely horrified to hear that she visited us for six months solid, on a daily basis.

“Any advice for us future midwives?” came one of the questions.

“Listen to us,” I said. “You’re going to be coming out of this university with six years’ of study behind you, but at the end of the day disabled mothers are – and always will be- the experts. Very few disabled mothers decide to have a baby willy-nilly. This is a decision that we agonise over, and sadly a decision that many potential mothers don’t have the mental energy or the fight to follow through with. Don’t treat us like we’re stupid. Support us, don’t frighten us. Often we are frightened enough.”

When Mary came back in, she was surprised to see us all smiling and laughing, me most of all. I had managed to get ‘down with da kids’ and I could see that I had really got through to them. I was still in pain, but happy. I had changed minds, challenged perceptions through opening up old wounds. And those wounds were slowly healing again.

Alison turned seven on Saturday, so I have been a wobbly yummy mummy for seven whole years now. And although it’s had its challenges, I wouldn’t change it for anything. I missed her birthday as I was in college in Maynooth. On Sunday, we were asked for examples of self-advocacy, and so once again I went through how we advocated for the right to be parents. Our class was horrified, to my delight, because it confirmed to me that what we experienced was wrong.

I can’t change that experience. The comfort I can take from it, however, is that we proved everyone wrong. That we have a beautiful, intelligent daughter who made our lives purposeful and complete. Alison makes me want to be a better person every single day. She’s the one that reminds me why I speak out so much, why I hope one day that the world will be a better and more accepting place for disabled parents.

Recovering from the hurt in my heart will be a lifelong ordeal. But if I can help, encourage and educate others to make the lives of future disabled parents easier, it will be worthwhile. And hopefully, in helping others, my own soul might finally heal.