Category Archives: parenting

Tiny Thursday Thought: Elves not quite Shelved

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

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

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

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

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

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

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

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

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

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

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.

A Letter to my Sixteen Year Old Self – Tuesday Thoughts 5

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Dear sixteen-year-old Sarah,

You don’t know me, but I am you, writing this from the year 2023 (no, you have not died alone at the age of 25, as you thought you would!) In fact, you’re due to turn the big four-oh next year, and life is even better than you could ever imagine, though I know it’s hard to see it now.

Right now, Sarah, you’re the “swot”, the misfit, and you don’t have that many friends. You’re lanky, clumsy and awkward, and no matter what you do, you just can’t seem to blend in. Maybe you don’t realise it now, but it’s not your destiny to fit in, and that’s not a bad thing. My dear, you’re not a stick of foundation, existing only to cover over the cracks. You were born to stand out, and as cringeworthy as it may seem now, in time you will embrace it. You will be a rock of support for so many of your peers, disabled people who, like you, yearn to live independently. You know that you’re good at looking out for other people.

Unfortunately, you’ll always be stubborn and you’ll never really take your mother’s advice, and learn to truly look after yourself. This will always leave your mental health a little fragile, something you will struggle with over the years. However, your future is so much brighter than you could ever imagine, and contrary to what you believe, you will find someone to share your life with. In fact, you will meet the love of your life on the first of November this year, the year 2000. Where? Clochan bloody House. I swear to God, this isn’t a word of a lie. You are going to be so glad your mother forced you into respite, at the ripe auld age of sixteen?! His name’s John Paul and he’s perfect (okay, not exactly; he’s from Laois, but sadly some things cannot be helped). You think you don’t believe in love? Well, this guy is going to shatter all your illusions.

You two need each other it’ll be you and JP against the world. Against the advice of well-wishers, JP and yourself become will rather close and in fact, he will be the only partner you’ll ever need. You’ll attend your grad with your boyfriend, and he will come up to Trinity College to visit you at weekends. Yes, you read right – you’re going to university. You’re a hard worker, and you’ll study English in Trinity with the intention of pursuing a career in writer (and God bless, you’re still trying). You will live independently from your parents and after burning a few pizzas, you’ll learn that you’re actually a proficient cook, able to whisk up meals out of the measliest tins. You’ll meet Brendan Kennelly and exchange pleasantries with him in Front Square, sit in lectures given by Seamus Heaney, and write essays about Shakespearean plays, all while feeling like the biggest imposter to walk through through that wooden Front Gate. I promise you that your classmates all feel like imposters too, and how I wish I could go back and whack your heads together!

Anyway, back to JP. I know you’re baulking at the idea of marrying a disabled person for the sake of it, but that’s not what’s going on here. This guy is super supportive of your dreams, as you are of his. You want what’s best for each other, you constantly encourage each other to embrace your individuality and each other’s interests. It will surprise you, as a skeptic of the institution of marriage, that you’re going to walk down the aisle in Tullamore Church in August 2010. 

You will also have a family, even though I know you’re dubious about whether you would make a good mother. Only one person on this earth could be the judge of that. Her name is Alison, who you’ve named after your mum’s favourite bluegrass singer, Alison Krauss. She will be perfect in every way. Of course, motherhood will not be an easy path and yet again, you will find yourself having to prove your ability to everyone. If I could lend you one piece of advice at this stage, it would be not to listen to the doubts of others. There is no reason why you’re any less capable than those so-called “able-bodied” mothers who can carry their children on their hips. It’s a tired cliché, I know, but love is really all that you’ll need. And her love will carry you through, and make you a better person.

You’re afraid of what the future holds right now. Many of your disabled friends have been relegated to the modern-day equivalent of sheltered workshops, but you shouldn’t be discouraged by this; there are often different routes to our destinations of choice. Besides, just because you will be lucky enough to go to university doesn’t make you better than anyone else. If you ever become privileged enough to pursue writing as a career, then you must learn to cast those prejudices aside and truly listen to those stories around you. You’ll learn so much more than you think.

Right now, you’re contemplating writing a play for the summer, in order to secure your place in TY. Just follow your heart. It will be huge. You and your friends will become so much closer. However, one mistake you’ll make for years is taking yourself and your writing too seriously. Writing is something that you’ve done forever, but you’ll hate it for a while. You’ll jack it in to try something more mainstream: office work. Yes, you’ll abandon your dreams for a while but you’ll always be led back to writing – where you’ll belong. Just to warn you – it will never make you rich. But you’ll come to accept that money is no substitute for good mental health.

And one last thing – your biggest fear will come true in just nine short years. I’m afraid that your mum will be struck down in her prime, at the tender age of fifty-one. You will be devastated, naturally, but don’t you dare wallow in self-pity. You owe her a lifetime debt of her steadfast belief in you, for her refusal to allow you to sit around and wait for opportunities to drop into your lap, for never mollycoddling you. Only when you get older will you truly appreciate the struggle that both mum and dad faced in proving your true worth to those who advised them to dump you into a home, why they insisted that you went for extra physiotherapy sessions, and why they pushed you out into the world. Right now, it seems unfair that you have to cook every weekend, or do a mountain of chores, or cycle to school every single day, even in lashing rain. But life isn’t fair, and by the time you leave college and go on to work and starting your family, you’ll realise that. And you will be filled with an irrepressible sense of right and wrong, and the strength to fight for your rightful place in the world.

So, my child, keep pushing forward in the knowledge that although things look bleak now, they will get better. Your work ethic and charming personality will win through in the end. Just be patient and keep the faith.

All my love,

39 year old me.

Forgiveness, Please!

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So, where have I been in the monotony of lockdown, I hear many of you ask. Well, like many of you, I have been homeschooling and sorting out my house. Actually, that last part is a lie. I’ve been sorting out my head – after years of using this blog as some sort of replacement therapist, I started talking to a real one, a qualified one instead. If you have the money, I strongly recommend it. Even though I’ve written about my mother dying and the trauma surrounding Alison’s birth/first homecoming, I’ve never relayed any of the feelings behind these things to a professional, and now, at a time when I have far too much time to think, I decided that it was the right time to tackle my demons and get my real life back. And I have to say, it’s going far better than expected. I feel so different, and more like myself. Look, I’m even writing a blog – it’s a miracle!

We started talking about Alison’s birth and the emotional rollercoaster that came with that, the unfairness of the scrutiny we were under and how it affected my mental health to the point where I stupidly fought Postnatal Depression on my own. She responded with things like “that was hard” and “that was so unfair and clearly damaging”, which made me feel validated in what I felt. Then, at the end of the session, she sent me a worksheet – on forgiveness.

My first reaction was, “Well, clearly she wasn’t listening as well as I thought if she thinks for a second that I can forgive the feeling of being scrutinised, not to mention the subsequent three years (and probably longer, if we’re being honest) of depression.” I shut down my laptop, walked away in anger. I’m not ready to forgive, I thought. That time after Alison was born damaged my confidence, and my relationship with my husband and my child. I felt deprived of the freedom to make mistakes like other mothers. I had been subjected to excessive scrutiny, making an already stressful time, even more so.

But a couple of days before my next counselling appointment, I opened up the file again and read it. Forgiveness is not about forgetting how you were wronged, it is about letting go of anger. I realised that I had been carrying anger around for a long time, and that it was now exhausting me. I realised how, sadly, that anger led me to decide that I couldn’t face having any more children in case the same thing happened again. That anger and fear stopped me from seeking help at a time when I needed it most. Every year, I find Alison’s birthday overwhelmingly emotional because those memories and feelings come flooding back.

And I started to think more closely about the anger that I was feeling. I cannot deny that some good things have come from that anger. I started writing about my experiences as a disabled parent because of it. Many of my peers came to me for advice on starting a family and accessing services on the back of those angry words. I became involved in the (Re)al Productive Justice Project, where I spoke about my experiences with the Health services, both positive and negative, and in doing so, highlighting the physical and attitudinal barriers to parenthood for disabled people. I’ve spoken at the International Disability Summer School about the shortcomings of the maternity services for disabled parents. I’ve written blogs and magazine articles. My blog was quoted in an academic study of disabled writers by Elizabeth Grubgeld, Disability and Life Writing in post-independent Ireland. Most recently, my blog was included in a radio segment called “In the Bleak Midwinter,” which documented a range of women’s stories, some of whom had given birth in mother and baby homes. It was the first time that I considered my story to be part of a wider picture, the ongoing injustices against mothers and their children in Ireland. So I am proud of the part my story has played in this wider narrative.

However, if this stupid pandemic has taught me anything, it’s that life is delicate. It’s short. It’s so precious. And now that I am really ready to heal properly, I don’t want to waste any more time seething in resentment and pain. I want to enjoy my life. So here goes…

To the medical professionals who doubted me, and in turn made me doubt myself – I forgive you.

To the Public Health Nurse, for your scrutiny – I forgive you.

To anyone who expressed doubt when I needed your support – I forgive you.

To those who judged me – I forgive you.

And finally – to that face that looks back at me in the mirror every day, who gave your baby the jar food instead of cooking fresh, who gave (and still gives!) their kid way too much iPad time when times got tough. Who saw seeking help as a sign of weakness, who made some crappy parenting decisions (but a lot of decent ones too) – I forgive you too.

And that forgiveness feels so good.

Poem: What is Mum?

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(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.

Healing Heart

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Progress is progress is progress…

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So, it’s the end of 2018, which in some ways has felt like the longest year ever, and yet I remember sitting here writing last year’s post as if it were yesterday. It’s been a busy year, and here are just some of the highlights:

I did a “Begin your Novel” course in January, and I now am 26,000 words into Draft 2. Maybe I’ll finish it before I die.

I had a couple of job interviews, none of which resulted in me getting a job. May I respectfully ask how in the name of chocolate are you supposed to get experience if you need said experience to get a job? Grrr. Grrr.

I threw myself into promoting Independent Living, which I still think is one of the most important philosophies in the whole world, as it recognises disabled people as equal citizens with rights and choices. I blogged about it and also made a video as part of the #IndependentVoices campaign. I also got to work with some amazing ‘young’ people (I don’t believe I fall into this category anymore) and found out that the future of the Movement is in their capable hands. In September we had the launch of Independent Living Movement Ireland, formerly known as Center for Independent Living Ireland.

I applied to be on the UNCRPD supervisory committee, but was not selected. I did get an interview though which was a huge honour.

I gave two lectures to university students – one about the use of technology to students in NUIG via Skype and the other was about parenthood and disability to UCD students (which was a bit impromptu as I stood in at the last minute for a friend who couldn’t make it). Nerve-wracking to say the least.

I wrote an open letter to An Taoiseach Leo Varadkar which was published in the Tullamore Tribune and also read out on Dublin South FM (Ger Scully and Sean O’Kelly, if you’re reading this, many thanks).

I started the Certificate of Disability Studies in NUI Maynooth in October, arrogantly thinking it’d be a piece of cake only to find it’s actually pretty intense with a lot of work and reading involved – oops! It’s so much more than getting the piece of paper for me, though. I want to understand the roots of the oppression of disabled people so that I know how to fight against it.  That said, I need  to stop speaking out in class. I’m coming across as a know-it-all and I will find myself getting beaten up for my lunch money. (If I don’t pass it, I may cry)

I’ve semi-committed to writing another monologue in the New Year with the talented Peter Kearns (Once this course is finished, though – my head is melted)!! Hopefully it materialises.

Oh, and I’m kind of doing some driving lessons! Think the instructor is a little dubious as to whether I can actually do it or not… only time will tell! Fasten your seatbelts!

And finally, I just about managed to keep this blog active (though don’t expect too much before my course finishes in April. Three essays and a group presentation will eat my time). Thanks to all my loyal followers for liking and sharing this pile of drivel. Your cheques are in the post!

Best wishes for 2019! xx

 

Short Story: On the Edge

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The pale pink light gave the room a heavenly glow. Siobhan lay in silence, watching the cavity of her chest rise, then fall, then rise again. The dripping noise from outside her window had stopped; the rain must have finally subsided. It had kept her awake most of the night, which meant that she was not jolted from the security of darkness to give Aoife her night feed. Michael was supposed to be on duty tonight, but Siobhan had supposed that there was no point in waking him up. He’d have only been cranky, and God knows there’d been enough bloody rows between them in the last few weeks to last a lifetime.

‘You’re crazy, woman,’ he’d said to her at the peak of yet another row where she had threatened to leave for good. She’d even had her cabin-sized wheelie packed beside her, although she wasn’t sure what she had put into it. The decision to leave had been, as in times previous, a spur of the moment one, made because she couldn’t bear those nasty voices in her head. This time had been different, however. She had really hurt him.

‘If you hadn’t wanted your precious baby so much, I’d still be normal and not a bloody psycho,’ she’d screamed at him as she walked away, the sound of her own sobs failing to drown out Aoife’s.

She’d come back of course, hours later, and she knew Michael was relieved, even if he didn’t want to show it. They should’ve tried to talk it out there and then, but they were both tired from the fight. The constant fighting. Fighting to make it through the days, the hours. This had been exactly three weeks before, and now the pair of them were walking on eggshells. It infuriated her how he always tried to say the right thing, always tried to give her space. If he could find it in himself to be as much of a cunt as she had been, then she wouldn’t need to carry so much guilt.

A crappy mother, a crappy wife, thought Siobhan as she peeled off the bedclothes and slid into the tracksuit bottoms that she’d strewn on her bedside locker just a few hours before. She picked up one of Michael’s hoodies from the shelf, not because of sentimentality but because the excess material hid her grotesque frame, the extra pouch that now hung around her waist, like an internal bum-bag. She inhaled as she peered into the cot at her sleeping daughter, longing to feel that special connection. Aoife’s thick lips smiled, something which Kathleen, Siobhan’s mother-in-law had insisted was just wind. Well of course it was just wind, Siobhan had thought. It seemed that Aoife was willing to settle in anyone’s arms but in the arms of her mother. Siobhan didn’t know how she felt towards Aoife, but it wasn’t love. It wasn’t hate, either. It was nothing.

What sort of mother feels nothing towards their own baby? A baby that she had yearned for since she was given her first baby doll by Santa at the age of just five years old? Three years of expensive and gruelling IVF had given Siobhan a daughter more beautiful than she could have ever imagined, and yet at that moment, Siobhan didn’t feel that she was cut out for years of self-sacrifice, of putting somebody else first.

Trying to stop herself sniffling in the dark, Siobhan padded towards the door, watching the sleepy scene. It was almost romantic, like a Cow & Gate ad. A gentle inner voice tried to persuade her to take back off her clothes, to lie down and try to sleep, but Siobhan thought it was too late now. She crept into the kitchen and rummaged through the medicine box, pocketing every painkiller she could find.

Soon this pain would be over.

Soon she would be over.

Despite the high winds earlier in the night, Siobhan hadn’t expected to be peppered with cold, misty rain when she opened the front door. She smiled to herself as she momentarily considered bringing an umbrella. Ha! She thought. People who are dead inside have little call for umbrellas.

She walked over the Whitehall bridge. The road was gleaming black from all the rain, and the usually busy Daingean Road was quiet. She had it planned: she would walk a few miles down the canal, then she would take all the pills until she felt a little delirious. At that moment she would succumb eternally to the murkiness, allowing herself to sink to the bottom. She supposed that people might be sad for a few days – her sister Aine would take it particularly hard – but in that moment she was grateful that her parents were no longer alive to feel the pain. She wished that she was more religious, that she believed that she would be reunited with her mam, whose voice she yearned to hear with every fibre of her being. But she wasn’t.

The wind was gathering pace again, a perfect time to venture nearer the edge. This way, she wouldn’t have to jump. She might have been just out for a midnight stroll when she was blown in. Nobody would have to know. She was just about to step closer to the edge when a gravelly voice behind her startled her:

‘Wild night to be out for a stroll.’

At first, Siobhan thought she was hearing things, because surely nobody in their right minds (she didn’t fall under that definition, she supposed) would be out at this hour? When she turned around, the sight of a shadow startled her. Despite the wind, she could detect the metallic smell of vodka from his breath. Yet this person was not staggering: he was trudging along slowly, as if carrying a great weight on his shoulders. She felt the hairs rise on the back of her neck, ready to go on the defensive.

‘Mind your own business,’ she said at last. Couldn’t he see that she wanted to be left alone? It occurred to her that he could be dangerous, maybe capable of rape or murder. But then again, wasn’t everyone? ‘I don’t have any money. Leave me alone.’

She half-jogged further up the canal path. It never occurred to her to walk back towards home, where there would be somebody waiting to protect her. What she did realise, however, is that she didn’t feel that she was worth protecting. She also noted that while she wanted to disappear, dissolve into the earth as though she never existed, she needed to have control over how it happened. God knows, she thought, it’s the only thing I seem to have any control over at the moment.

Her footsteps slowed, and when she was outside her own head she heard the hesitant footsteps behind her. The aroma of cigarette smoke was infused in the sharp October breeze. She sat down on the hill outside the old Daly farmhouse, inwardly cursing herself for doing so as the wetness crept in, leaving her derriere saturated. The violent wind had subsided; all she was left with was silence and self-disgust.

After a few moments, her companion crouched down beside her. He smelt of sweat, of old urine, of hopelessness. Bloody typical, she thought. Trust me to meet a drunk. Her partner inhaled, which started a violent coughing fit.

‘You ok?’ she asked, forgetting herself.

The man nodded. ‘Be grand in a minute,’ he said, wiping the tears from his eyes. ‘I’m well used to it by now.’ He reached into his jacket pocket and pulled out a long can.

‘You should quit the fags,’ Siobhan said, immediately hating herself for her own self-righteousness. Who was she to talk when she had the entire contents of her medicine box in her pocket, ready to take in one go?

‘I probably should do a lot of things,’ he answered her, his voice quiet. Siobhan heard the snapping of the can, and her stomach turned at the smell of fresh beer, presumably cheap. ‘You shouldn’t be out here so late. These parts can be dangerous for the likes of you.’ The beer trickled down his throat. He wiped his mouth with the back of his hand.

‘What do you mean, ‘the likes of me’?’

He waved his hand, fanning her words away. ‘You know exactly what I mean.’ He rummaged in his pocket. ‘Smoke?’

‘No.’ Her voice was firm. ‘I don’t smoke.’

‘Ha. It must be hard to be so bloody perfect.’

Siobhan was relieved to smell the smoke; sitting so close to him, her bloodhound-like sense of smell detected urine and old underarm sweat, with the slightest hint of shit. She yearned to escape, to be at one with the swirling brown water in front of her. She took a deep breath, then another. Already she felt like she was suffocating. It wasn’t the feeling of comfort that she had been looking for.

‘Perfect. Ha! If only.’ For the first time since they met, Siobhan considered how she must appear in her companion’s eyes: a silly little damsel in distress, a privileged housewife who couldn’t possibly know what real hardship felt like. ‘You don’t know anything about me.’ She stood up, putting her hand in her pocket, feeling safer as she held the pills in her hand. As long as she had a plan, however warped that plan might be, she felt grounded. More grounded than she had felt in a long time.

Her stomach turned to bile as she thought about events earlier that day. It had started as an average day, or at least what she now considered to be average. She found it difficult to believe that just a matter of months before she was the manager of the Tullamore branch of the Bank of Ireland, bringing in quite a generous pay cheque. They’d squirrelled most of it away, of course, being sensible and thrifty. Aoife had been a surprise, a most welcome surprise. Her mere existence was testament to the fact that even the most highly paid and expensive doctors can get things wrong sometimes.

Aoife had awoken at six that morning, demanding her morning feed. Siobhan should have been well-rested; Aoife had slept since half nine the night before. Instead Siobhan had laid awake all night, unable to turn off her brain which was thinking at breakneck speed. What if she had dropped Aoife when she nearly tripped over that loose tile in the bathroom earlier? Aoife’d had a tiny bit of red in her spit-up earlier which Siobhan had assumed was from the strawberry she’d eaten earlier that day, but now she was worried that it was blood. She should’ve checked, and she didn’t. What sort of mother would allow her own child to bleed to death?

Siobhan couldn’t live with the constant inner panic anymore. It didn’t take a genius to work out that Aoife would be better off being looked after by someone more experienced, someone who would appreciate her for who she was. She warmed inside as she thought of Aoife’s blonde eyelashes, the tiny half-moons of her fingernails, the dimples that appeared when she smiled. Aoife was perfect. She deserved better than the fighting, than a mother who didn’t know what she was doing.

Another hacking cough disturbed Siobhan from her daydreaming. She stood up, and adjusted her jacket.

‘Anyway, it was nice to meet you. I really must…’

‘It was this very spot,’ the man said to her, gesturing towards the canal. ‘Where they found her. You know, I come here every night, try to work out why… She didn’t even leave a note.’ He wiped his chin on the sleeve of his jacket. ‘They say she killed herself, but I reckon that’s bullshit. She had three kids… she was happy.’ He lit a cigarette, the blue threaded smoke lingering in the calmness; the wind had passed, as Siobhan had known it would. ‘I’d only seen her the night before. She was smiling, laughing, dolled up to the nines…’

‘Who was?’ She only asked because she assumed it rude not to.

‘Karen. Oh, Karen. Now I’ve made a lot of mistakes – I’m sure that’s obvious – but she definitely wasn’t one of them.’ He pulled hard on the cigarette, as if he was seeking comfort. ‘She had it all, believe it or not – looks, brains – her mother’s doing of course.’ He crushed the empty can into the palm of his hand. ‘You hear stories, don’t you? Tell-tale signs, people losing interest in their lives -goodbye notes – we got none of that. No explanation.’

‘I’m so sorry.’ She didn’t know what else to say.

He shrugged. ‘They say men don’t talk. I don’t talk about Karen. I don’t know… maybe I’m hurt, ashamed… She could’ve fucking said something.’ The trees rustled gently in the breeze. ‘In the beginning, it was so simple. She’d been selfish, a coward – I thought maybe it’d been some silly woman hormonal thing, but they have pills for that now, don’t they?’

Siobhan scoffed. ‘You men are all the same. You think that solutions are so simple. And that we’re hysterical little women who know nothing about hardship. You have no idea what it’s like to have no control over your emotions, having to act all normal when your head is completely frazzled.’ Her voice started to break as she thought of her daughter at home. ‘How it feels to be completely useless and to have someone depend on you…’ Her chest shook with hacking sobs; she could barely catch her breath. The man looked up at her, nodding his head.

‘There,’ he said. ‘It’s out there. You’ve said it. So you’re a crap mum.’ His candidacy surprised her. ‘I suppose you beat her black and blue when she cries…’

‘Well, of course not…’ She was taken aback.

‘Or spend your money on high heels instead of baby formula.’

Siobhan’s fists clenched. ‘How dare you…’

‘Or head off for evenings out and leave bubs home alone. Leave a bottle in the cot, be grand.’

She laughed at the absurdity of the last one. She knew he was joking now.

‘You’d be surprised,’ he shrugged. ‘I’ve seen it. But Karen wasn’t like that, and neither are you.’ He stood up, wiping his hands on his thighs. ‘Go home. Get a nice hot bath.’ Siobhan screeched as he slid his hand into her oversized jacket pocket, taking out the pills and throwing them into the canal. ‘Things will be better in the morning. You’ll see.’

‘How did you know?’

‘Woman, you’ve been rooting in your pocket all fecking night.  This isn’t my first time to do this, you know. After Karen, I swore never again. Not on my watch, anyway. If you wanted to kill yourself, you would’ve done it by now. We’ve been here all night.’ He nodded at the orange rising sun and grinned. ‘For all you knew, I could’ve helped you. Murdered you. Look at the state of me. Wouldn’t blame you for making that assumption.’

‘I guess we can never know what’s going on in other people’s lives.’

‘Nope.’ He started to walk away. ‘Unless we choose to tell people. How can people save us if they don’t know that we’re drowning?’

She watched him walk away, and how he walked with a sense of purpose. She supposed he had nowhere to go. But, she realised, he had done an important thing that night – he had saved her life. She was still shaking when she got to the front door. A white-faced Michael greeted her, his face filling with relief as he beheld hers.

‘Thank God,’ he said as she broke down, wrapping his protective arms around her. ‘I was so worried, I thought you might’ve done something stupid…’ Both their faces were awash with tears. ‘I’m so sorry… I’m so glad you’re okay.’ He squeezed her closer to him.

And then Siobhan whispered the words she had always found so hard to say:

‘Michael, I’m not okay. I think I need help.’

He nodded, and finally Siobhan felt the weightlessness she had been craving.

Something Deep Inside

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Three years later, I still can’t make up my mind what I want. I really thought that what I wanted was to be a full-time freelance writer, with nothing else to bother me during working hours – just me and my desk. I tell people I am writing a novel, or at least, trying to. So why have I just committed to spending the rest of this year, and some of next year doing Disability Studies in Maynooth? Don’t get me wrong – I have no regrets. It looks like an interesting course and it’ll be handy to have if I ever do decide to go back into employment in the disability sector.

I’ve had a really productive summer (evidently not blogging-wise but you can’t have it all). In February I was co-opted onto the Board of the National CIL which was a huge honour, and I’ve been involved in some interesting and thought-provoking projects. Most recently I attended an Independent Living workshop in Offaly which was facilitated by a fellow activist. The aim of the workshop was to get back to the roots of Independent Living and to reinforce the idea that as disabled people, we are the experts in our own needs. It was a great session.

One of the questions the facilitator asked us was ‘What are the barriers to Independent Living?’ Loads of great answers were given: lack of Personal Assistance, lack of accessible housing and transport. But I, ever awkward and different, gave the answer of ‘internalised oppression’, you know, just for the craic. The facilitator smiled.

‘Big words,’ she said. ‘Would you like to explain what that means?’

‘Sure.’ My hands were sticky with sweat. ‘Internalised oppression is when you come to believe all the negative labels given to you from outside sources.  It’s when you have been told and reminded of your limitations so much that you begin to believe them. As time goes on, you start to place limitations on yourself to the  extent where you hold yourself back from achieving what you are truly capable of.’

I have been involved one way or another in disability activism for the last fourteen years. I have seen people fighting for housing and personal assistance and accessible transport. Any progress in disability rights that was made prior to the recession has essentially been wiped out. (You are free to argue this point; I love nothing more than a good old-fashioned debate). Look, it took Ireland twelve years to ratify the United Nations Conventions for the Rights of People of Disabilities. Yet there is a long way to go before access to Personal Assistance or accessible housing will be recognised as basic rights. We are in the throes of the worst housing crisis this country has ever seen. Many families are living in abject poverty; it was just reported this week that current childcare costs can average twenty percent of household income. As always, the supports needed by disabled people to live independently are considered a luxury.

Is it selfish, given the current economic climate, for disabled people (aka people disabled by our society) to be demanding more? I’m sorry, but I don’t think so. In fact, I think disabled  people have been very accommodating over the last few years. There was barely a whimper when the charges for medical card prescriptions were introduced. The Mobility Allowance disappeared almost without warning, with nothing to replace it. in fact the only time disabled people caused a fuss in Ireland was when James Reilly callously threatened to retract a massive amount of funding from the Personal Assistant Service in 2012. Activists slept outside the Dail in the freezing cold for two nights in protest, and subsequently the cuts were reversed, a momentous occasion in Ireland’s disability history.

And as I watched the entire rotten saga unfold from the comfort of my armchair at home, I felt inspired. Not in a sort of ‘aren’t these cripples so brave’ kind of way, but it was the first time I realised that I had been so blind. It was 2012 and my little girl wasn’t even a year old yet. I had spent the whole year fighting my own battle, trying to prove to so-called health professionals that I was not a danger to my own baby. A year where I demonstrated with grit that I was more than physically capable of raising a child to the many onlookers around me, but then spent my nights lying awake, wrestling with fear and self-doubt, allowing my own tears to sting my face. Would I be physically able to raise a toddler? Would some well-meaning person report me for being a bad parent if I made a mistake? If I was struggling and had to ask for help for whatever reason (not necessarily disability related), would my child be removed from me? And yet, there was hope. People out there were protesting, demanding to be seen as equal. Demanding respect, demanding their rights.

And it was then that I realised that I was my own worst enemy. I was succumbing to fear rather than standing up and questioning the way I was treated and perceived. It took a long time for me to believe that I was a ‘proper’  and capable mother because parenthood isn’t perceived to be the norm for disabled people in Ireland. There’s horror stories and rumours everywhere. Most damaging in my case was that little internalised voice that led me to believe I was incapable.

My friends, I would put it to you that this little voice is the single biggest obstacle to true equality in Ireland. This is the voice that tells us that we are less than, the voice that  advises us not to voice how we feel ‘because no-one likes an angry crip,’ the voice that tells us that if we try harder to conform that one day we might be accepted as equals.

And this is the obstacle to true equality that I predict will be the hardest to remove. Why? Because whether your impairment is congenital or acquired, social conditioning dictates that *you* are different, that *you* must do your best to fit in.

I don’t know for sure at the time of writing this blog whether I want to work in writing or disability, or if (ideally) I get to do both.

What I do know is: Internalised oppression, I see you. I am naming you. And until my dying breath, I will strive (hopefully with others) to always challenge you.

Rebel Girls

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My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.