Grieving and healing

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‘They say time’s supposed to heal you, but I ain’t done much healing,’ are the lyrics that most struck me when I heard Adele’s new song ‘Hello’, for the first time. They certainly aptly describe how I feel about the fact that I, like so many other people across the country, didn’t manage to get tickets for her upcoming concerts in the O2 and in Belfast in spite of trying to phone Ticketmaster from 8.30am onwards on Friday 4th December (God loves a trier, right?) and reports later revealed that tickets had sold out within five minutes of going online. I won’t lie. I was gutted, but later made light of it when I offered my kidney in return for Adele tickets on Facebook (that offer’s still there, by the way. Message me here, on Facebook, on Twitter… whatever suits).

I’m just about over it now. If only real grief was so easy to deal with.

Today will be the seventh year I’ve marked mum’s birthday without her. Seven years. I’ve counted it up a few times because I still can’t believe she’s been dead for so long. She’s been dead for six and a half years. I haven’t had a proper conversation with her, touched her face or heard her voice in nearly seven years. Breaking it down like that fills me with panic, because when she first passed away I thought that I would be unable to function without her. I didn’t think I could. At the start, there were days when I would go to work in jeans and hoodies. There were other days when I couldn’t face going to work, or eating, or doing anything remotely productive. Then there were the constant thoughts. My last words to her were not ‘I love you’ or ‘Thank you’… (It annoys me that I can’t remember what they were, but I know they were nothing remarkable). If only I’d known how sick she was, I would’ve, could’ve, should’ve… What were her last thoughts, was she scared/happy/sad…? I was consumed by these pointless thoughts for nearly two years, and they nearly destroyed me. For my own wellbeing, I’ve learned to let them go.

In an attempt to ‘get my act together’, I reluctantly agreed after three months to go to the Parish Centre in Tullamore for counselling. Bless them, they were nice, but the lady I spoke to spent most of the time asking me about my disability. ‘Right, so, you feel guilty because you didn’t get to say goodbye to you mammy… here, tell me something, do you dress yourself in the morning? Aren’t you great?’ At the end of the session I lied and said that she had cured me of my grief and I didn’t need any more counselling sessions. In fairness, the bizarre experience did cheer me up for a while (purely because it was like it had happened in a parallel universe), but then I found myself facing my own feelings again, and I didn’t like that. So instead of dealing with them, or at least acknowledging that I had them, I decided it was my job to look after everyone else. (I genuinely love looking after others, don’t get me wrong). Is Laura okay? Is dad okay? Is Stephen okay? Is Alex okay? Is John Paul okay? Are the goldfish okay? I took on as much as I could in order to avoid coming face-to-face with the gut-wrenching pain that was losing my mother. This wasn’t their fault, and I was more than happy to do it, but my obsession with their well-being became a tad unhealthy to the point where I couldn’t decipher what I felt myself.

Even when it came to selling our family home, two years later, I remained steeled against falling into sentimentality. We had to sort through all of our mum’s stuff, which was the hardest thing I’ve ever done (you know, apart from losing those Adele tickets). I tried to be practical and sort everything into ‘valuable’ i.e. jewellery, handwritten books, her drawings and paintings, photos and ‘crap’ i.e. keyrings, pencilcases, receipts, empty notebooks. Us three girls did this together and Laura and Alex started reminiscing. ‘Aw, remember when mum wore this? And the day she bought that?’ I walked out on one particular occasion. I didn’t want to remember. As far as I was concerned, mum had been dead two years and grieving time was over. I had to move on with my life. I wasn’t going to get sucked into the past again. It was too painful. If I had to talk about mum in the past tense, it would mean that she was truly gone, and I wasn’t ready to acknowledge what that meant yet.

Fast-forward three years, to 2014. Much had changed. I had my own daughter. We lived in our own house. Everything was good, brilliant even, when suddenly I started to feel a grief so intense it felt like it was choking me. I’m not sure whether it was the passing of a family member in April 2014 that triggered my grief, but I felt the loss of my mother as strongly as the day she was buried. Every part of my body craved her, to see her, to hear her, to have her meet Alison. I felt lonely for her. I wanted to chat to her. This was nothing new, usually these feelings would pass as the days wore on. They didn’t this time; in fact they intensified. ‘To hell with this,’ I thought, annoyed, ‘I have a child to mind. Cop yourself on.’ But I couldn’t. Ignoring my grief wasn’t going to work, not this time. It got to a point where I could barely face getting out of bed. I forced myself to take time off work to recover and embrace these feelings. It was difficult but I learned so much about myself during this time. I learned that I tend to take on too much, that I become overwhelmed too easily, and that keeping things bottled up comes back to haunt you eventually. But equally I realised that I was stronger than I thought, that I had somehow managed to keep things together and that I would eventually regain the ability to do these things again once I took the time to take care of myself emotionally.

When I first read about the five stages of grief, I thought that the grieving process would be over once I’d entered and ‘completed’ each stage (the stages are denial, anger, bargaining, depression and acceptance). I imagined the ‘acceptance’ stage as some sort of finishing line where I would be able to think of my mother without bawling like an idiot. I thought that it would be like the ending of a Disney film – soppy and sentimental, but over. Some days I think I’ve conquered this grief, but in the last twenty-four hours I’ve heard ‘The Fairytale of New York’ twice and I’ve cried in public, twice. (Once was at an office party so hopefully my colleagues just thought I was pissed.) My mother once told me that ‘Fairytale’ was her favourite Christmas song, so every time I hear it my soul wells up with sadness that I try to suppress. Sometimes I can do it, other times I fail miserably.

I’m not an expert but from what I’ve experienced over the last six years, and from listening to others’ experiences of grief, it is a process that never ends. Although I’ve had to learn how to function without my mum, it doesn’t mean that I don’t miss her, and I still shed a tear or two at the most inappropriate times. And though it’s not convenient, it feels somehow liberating to acknowledge and embrace these feelings when they arise instead of trying to push them down all the time.

I guess what I’m trying to say is: mum, I love you. Some days I think of you more than others, and there isn’t a day that goes by that I don’t miss you. I won’t be able to contain my grief all the time, but hey, I’m only human. All I can do is try my best to make you proud every day. Happy birthday. Big hugs. I’ll have a Knickerbocker Glory in your honour (I’ll do what I have to do).

 

PS Seriously lads – those Adele tickets – all prices considered. All unnecessary organs up for grabs.

A little bit of me.

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My dad and I almost came to blows yesterday. He loves my blogs, but thinks that many of them are too disability-focused. ‘It’s not all there is to you,’ he said  while I sat there with my lips pursed tightly. What kind of armchair disability activist would I be if I didn’t write about the discrimination facing people with disabilities on a daily basis? I asked defensively. After the urge to have an Ali-style tantrum (she’s three, I’m thirty-one) subsided, I decided to select a few random facts to divulge about myself to you, dear  reader. You can thank my dad.

  1. I’m a Taurean, so by nature I’m a teeny weeny bit stubborn. I was also born in 1984, the Chinese year of the Rat. Incidentally, my biggest fear in the whole world is rats. I mean I would rather die than come face-to-face with a rat. The scariest book I’ve ever read is 1984 by George Orwell solely because Winston was tortured into submission by rats. (Freaky coincidence, no?) Mum fuelled my irrational fear of rats: one day she was taking me off the school bus and a rat darted across the garden, making mum scoop me up in her arms and sprint to the front door. We sat on the kitchen table until 10pm that night, when mum had installed the sonar system. But I’ve never felt safe since.
  2. I’ve always loved reading and writing. I started writing poetry when I was eight and decided that it was a sensible career choice. I imagined myself on the side of a mountain somewhere, hair blowing wildly in all directions, jotting furiously in a notebook. When I was ten I won a poetry competition for a poem I wrote called ‘The Conceited Man.’ I’d come across the word ‘conceited’ while trawling through the dictionary one day (as you do) and knew I had to use it somewhere special. On the night that I collected the award I had to read the poem aloud to an audience of four hundred odd people, and it included the line ‘My dad’s a boaster’. Neither of my parents had heard the poem before and I could see them in the audience with gritted teeth as I recited it. It’s unlikely that anyone else understood me, but the folks heard every word. I spent the next ten years fobbing off people who asked for copies of it.
  3. On a related note, I can often get away with cursing under my breath because people can’t make out my speech. Except with my husband. That man hears  like a bat. Well, I can’t get away with it anymore, now that I’ve told you all. Whoopsie.
  4. When you think ‘woman’, you might be inclined to automatically think ‘shoe shopping’. Not the case with me, shoe shopping is my worst nightmare. I can’t wear heels, pumps, uggs, open-toe or strappy sandals. Which means that I either have to buy really crappy shoes from Tesco or clumpy granny shoes #sexy. I wore heels to my school grad and everyone thought I was wasted. If only I had been but being supervised by teachers doesn’t really scream ‘relaxing drinking time’ to me.
  5. I have a large brown mole on my left shin which is a birthmark and the only time I remember it’s there is when we go on a sun holiday and I have to cover it up. I may get it removed…that’s what I’ve been saying for the last ten years. But if I ever get abducted, this birthmark could help to identify me and save my life.
  6. I’ve spent the last couple of months trying to establish a writing career, but I’ve decided if it doesn’t work out I am going to dedicate my life furthering my research into the long-term benefits of chocolate. Well, someone’s gotta do it, and I’m more than willing to volunteer. I’m selfless like that, me. And if there are clinical trials involved, well… count me in. Seriously, my addiction to chocolate is embarrassing. If there’s not at least two bars of it in the press I begin to hyperventilate.
  7. I got away with not buttoning the two top buttons on my school shirt for six years. Still, I’d rather do a hundred buttons than face a single rat.
  8. I don’t wear or own makeup. I tell people it’s a coordination thing, but actually I’m just  too lazy. Showering is effort enough. And time is a precious commodity, my friend. I’m so busy doing my high-powered job (writing) that being clean is more important. Plus there’s no point in expensive makeup when there’s a three year old in the house – this lesson was sorely learned when she got her hands on my expensive perfumes. She smelt like she was going on the pull to the Bridge House.
  9. I don’t drink anymore. All it does it make me sleepy. I’ve never done anything remotely funny when drunk, so what’s the point?
  10. When I was ten and in fourth class, I told everyone that I was going for a major, life-changing operation that  would possibly cure my Cerebral Palsy. Bless them, my classmates believed me and went to impressive efforts to make me a box of goodies to make sure that I wouldn’t get bored in the hospital when I was recovering. Of course, it wasn’t strictly true: I was booked in for a botox injection that would loosen the muscles in my right calf, thus helping me to walk better. The injection was administered within ten minutes and I was discharged on the same day and back in school two days later with no crutches, no wheelchair and no casts, not even a measly scar. And then I wonder why people think I’m overdramatic.
  11. When I was in Transition Year I wrote a play called ‘Waiting for Anna’ which was performed by my fellow classmates. I went to an all-girls school, so some girls were cast in male roles. They were not impressed but they managed to be true to their characters. When rehearsal began, most didn’t realise I’d written it which led to some interesting insights into what they really thought of it. To be fair, they were gentle, but it was then that I realised that having a fragile ego as a writer would work to my disadvantage.
  12. Every time I chide my beautiful daughter for not eating her dinner, I have to remember that I only ate sausages and Micro Chips for dinner for until I was ten. I refused spag bol, lasagne, pizza, potatoes, veg, boiled rice, sauces of any description and stews (except mum’s sausage stew). Now I can’t eat any dinner without veg. So any mummies with fussy eaters out there, don’t despair: there is hope. Your child will be  fine.
  13. Two foods that I will never ever eat are eggs and tomato ketchup. The egg aversion was the result of a dodgy breakfast when we were on holidays in Galway when I was about five and Laura was a baby. Dad had cooked eggs and you could smell the sulphur down the street, and the memory of the smell is still potent. I’m not sure why I hate ketchup, but the smell of it turns my stomach. So much so that on my communion day, when the waitress unwittingly lobbed it onto my plate, I had a shit fit in the middle of the Bridge House and refused to eat my dinner unless the hotel would provide me with a fresh dinner on a fresh plate, and a clean set of cutlery. Also crisps, of any description: I think it’s the fat and the saltiness. My parents are so proud of me.
  14. Finally, I’ve had stitches put into my head twice. The first time was when I was swinging around in the playroom with my friend Aoife and one of us let go and I whacked my head off the window ledge. The second time I was fourteen and in Lourdes singing with a group of people when I fell over and whacked my head. I barely remember being bundled into  a wheelchair and being brought back to the hotel. My poor mother back in Ireland was half-angry, half-hysterical. Actually I’ve taken a lot of whacks to the head. My poor, damaged brain.

So yeah, that’s me, warts and all – the face behind this blog. Please don’t unfollow this blog and I promise I will send you chocolate (you know, if I haven’t eaten it first).

Show me what you’re worth

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Value and worth are based on  all sorts of things. There’s material value, namely, the kind of house you own, the kind of car you drive, the balance on your bank account. There’s emotional value, which I think means your support network, the people who are still there when you’re being whingy and clingy and annoying. In today’s fast-paced world, value is obviously placed on the person who can perform the most tasks within a set time frame. Words to describe this person might include dynamic, motivated, driven, dedicated.

From the cradle to the grave, it seems as if life can feel like a great big competition. Babies’ weight and height are constantly compared. From the moment our children start school, there are art competitions, handwriting competitions, sports days. Although our job as parents is to teach our kids that they can only do their best, somewhere along the these kids learn that it’s important to be the best, it’s important to win. Just today, my three and a half year old daughter came home, devastated because she didn’t win a game of musical chairs at playschool. She’s learning that sometimes she loses, that she can’t win all of the time. This is something that I as a parent must teach her, and yet, I can empathise with her. I know what it’s like to lose in a world where winning seems so important.

As the loyal followers of my blog will know (hi dad!) I’m on a six month career break at the moment, and although I am enjoying it, it’s hard as well. We are born into a society where we are taught from an early age that having the best job, the highest paying job is something we should aspire to. As a person with a disability, our narratives are quite different. First we are born, and most of the time our parents are told not to expect too much. If we live past  a week or two, that in itself would be a remarkable achievement. Our parents don’t love us objectively, however; to them, we are everything. They push us through the system, ignoring the derogatory comments, challenging the lack of educational supports, tolerating being called delusional and stubborn. They don’t accept that their children are not worthy of equal treatment, and in turn, as we grow older, we must continually challenge the system too, proving ourselves to be capable, autonomous individuals.

Historically, man’s worth has always been connected with their physical and intellectual strength. During the Stone Age, people with physical impairments were often left to die. During the Christian era, people with disabilities were viewed as objects of pity, as charity cases. Then of course Charles Darwin came up with his riveting ‘survival of the fittest’ theory, a notion that Hitler took very literally as he carried out ‘assessments’ on people with disabilities, where he decided whether people could live or die based on their physical and mental capabilities. Granted, Hitler was a lunatic – few would dispute that – but in spite of how controversial his plan of creating the perfect human race was, sometimes it feels that we haven’t moved far from the idea of equating somebody’s worth with what someone can physically do.

When I was in college studying feminism, we used to discuss something called ‘the virgin/whore dichotomy’. Basically, it was this notion that women were either one or the other, and that in failing to live up to the  ideal of  the perfect virginal woman, they were imperfect, damaged, inferior. I often feel that when a story is told in the media about disability, the subject is either portrayed as being super-inspirational or vulnerable. You know the stories I’m on about (I’ve  written some and been the subject of others), they normally go along the lines of ‘Despite being in a wheelchair and taking ten tablets a day, Joe has managed to learn Chinese and Computer programming,’ or ‘Because of the cutbacks to her Personal Assistant Service, Emma may not be  able to enjoy living independently in her own home for too much longer.’  Stories like the latter are often the only way to highlight how the recession has affected people with disabilities. We sacrifice our  dignity in order to get our point across. And I believe this should not be necessary.

People with disabilities have much to offer society, and they are worth far more than a paltry €30 on a Jobbridge Scheme. All the new plans to create jobs for people with disabilities are laughable because many of us don’t want to be segregated from the main workforce. All we want is equality, which is not the ability to do as much as our peers, but to be recognised as useful, productive members of society.  Hopefully the UN Convention on Human Rights for People with Disabilities will be ratified next year, even as a tokenistic gesture that everyone should have equal rights.

We are worth so much to society, and now it’s time for us to be more vocal and construct our own narratives. There is no  need to feel small and insignificant. Shout loud. Make sure your voice is heard. Don’t let people  make you think that your issues don’t matter because they’re only perceived to affect a small number of people.

We deserve equality, in spite of our limitations. We are worth  nothing less.

Ten smartarse answers.

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When I took time off work to write, I committed myself to writing an interesting blog three days a week. As you can see, I haven’t yet managed to deliver on this yet (but I have been writing behind the scenes, I swear-the results will be ready in twenty years’ time). When I’m not writing or doing laundry (seriously, there are only three people in this house – where does it all come from?!) I spend my time dossing around, window shopping or doing some errands. And it is rarely mundane, because invariably somebody comes over to me and asks questions that are inappropriate, strange or just plain rude. Recently I’ve started to wonder how people would react if I actually answered these questions with the first thing that popped into my head. I’m sure I would not be popular at all, at all, at all.

Question/statement 1: Are you on your own?
My answer: Yes
What I’d like to answer: No, I’m not on  my own. This is my friend Mary, behind me. Say hello to Mary. What do you mean you can’t see her? Mary, come on introduce yourself, don’t be shy.

Question/statement 2: Is that your daughter?
My answer: Yes. Isn’t she lovely?
What I’d like to answer: Oh my God did you not see us on the telly? What was the point? I’m mortally offended. And believe me, I’m just as shocked that I’ve managed to get her to three-and-a-half, you’re not alone there.

Question/statement 3: Will I get your purse  out of your bag for you?
My answer: Ah no, I can manage, thanks.
What I’d like to answer: Sorry I’m holding up the people behind me, I have misunderstood the definition of ‘queue’. Please feel free to rummage through my bag. Here, do you have a pen? I’ll write down my PIN code.

Question/statement 4: Do you ever wish you didn’t have a disability?
My answer: No, I’m happy the way I am.
What I’d like to answer: (?!@#’\) No, but I could do without these annoying questions. Now go away, I’m trying to eat my dinner.

Question/Statement 5: I think you’re great, a real inspiration.
My answer: Trust me there’s nothing great about me.
What I’d like to answer: Here is my dad’s number and my husband’s number. They’ve seen me at my laziest. They’ll soon set you straight

Question/Statement 6: It must be horrible, having to use a wheelchair all the time.
My answer: Ah it’s not all the time. It’s just for energy conservation purposes. I still walk sometimes.
What I’d like to answer: Nah, at least I can beat my toddler in a race. Ready, Steady, Go! WEEEEEEEE!

Question/Statement 7: So did you conceive naturally, or did you get help?
My answer: I was just lucky, thank God.
What I’d like to answer: Here is a forty-eight page questionnaire about your sex life. Don’t worry, your information will be kept private to myself only. I’m just curious, is all.

Question/Statement 8: Do you wash and dress yourself in the morning?
Me: I do indeed.
What I’d like to answer: Yes I do wash and dress myself,  do you? Oh yay, we both deserve medals! Because obviously the ability to wash and dress oneself is the most accurate way of measuring one’s value to society, and Stephen Hawking ain’t all that.

Question/Statement 9: Can you cook yourself?
Me: I can, and I’m a good cook.
What I’d like to answer: When I’m not running around with a fire extinguisher or nursing first degree burns, I make a mean microwave lasagne.

Question/Statement 10: Do you live alone?
Me: Well ..no… I live with my husband and child.
What I’d like to answer: Here is my address, and a map of how to get there. I’ll be out between the hours of nine and five.

I’m a pussycat  really. But sometimes I show my claws.

Budget 2016: What money can’t buy.

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In less than 24 hours, we as a nation will be picking at the bones of Budget 2016, due to be announced today. I’m sure as always spending increases and cuts will be debated all over the internet. It’s depressing to think of the citizens of this country glued to the TV and Radio, waiting to hear if the Government is going to be generous this year after seven years of cutbacks that have left many families struggling to pay their bills. But as we all know, election time is coming, so I’ve no doubt that serious attempts will be made to dupe the masses into thinking that this  government really cares about the average Joe. I doubt it. Many of us are still struggling to keep our head above water, and the homeless crisis is starting to spiral out of control. And for people with disabilities- well – many of us seem to be stuck in some sort of twisted time warp.

In recent months, there has been some much-deserved focus on the problem of people with disabilities being stuck in outdated institutions, where they are mere recipients of basic care. Many of these people are cut off from their local communities, and have little choice over their everyday lives. Every new HIQA scandal is a reminder that the current model of service provision isn’t working. About 8,000 people, 1,000 of which are under twenty-seven, are now living in residential institutions. I cannot imagine having spent my twenties in a hospital-like setting. I spent my twenties partying my way through college, getting work experience and going on holidays abroad. I chose to get married and have a child.  I live in my own home. As a thirty-one year old woman, I am doing well for myself. As a thirty-one year old woman with a disability, I am living a dream that some of my peers cannot yet access. And it’s not right.

A few weeks ago a man who I have known and respected for ten years, veteran disability activist Martin Naughton, staged a three-day protest outside the Dail and was joined by many colleagues and friends. He urged for this government not to spend €450 million on maintaining and building new residential institutions for people with disabilities and instead  to allow access to individualised payments that would enable us to choose the services we need to live equally and independently. Predictably, the protest ended on a disappointing note, with no concrete commitments made to improving service provision for people with disabilities. According to the group of protestors named the People with Disabilities group, more than 68% of service users are currently dissatisfied with services provided to them. They claim this is because the people who use these services are chiefly recipients of them and do not direct them themselves.

Let me ask you a question – who is more knowledgeable on what I need, me, or a team of medical experts who have had their noses in books for the last six years? Each and every person with a disability knows what they need, and what they don’t need. Every day government money is being wasted on organisations and institutions who claim to know what’s best for us. When you have the privilege of working in the disability sector for over ten years, you see first hand the effects of the cutbacks that were made during the recession. I’ve seen high dependency clients’ hours being cut to the bare minimum, often to take them out of bed in the morning and put them back in the evening. I’ve seen people having to fundraise in order  to have their houses adapted after acquiring disability because the Housing Adaptation Grant is no longer available. I’ve read stories where people are forced to choose between heating and food. Medical Card revocation, stopping the mobility allowance… I could go on and on.

I followed the response to Martin Naughton’s protest on social media and online papers, and of all the comments left on thejournal.ie, Suzy Byrne managed to clearly articulate the crux of the matter. She wrote: ‘We don’t need celebrities patting us on the head – all they usually do is turn up to rattle buckets for us and get pictures in paper. Same with most politicians – this is the problem – disability is not seen as a human rights issue but one of charity. And too many able bodied people benefit from this in terms of jobs and wages and status in society.’ Every year, after the pre-budget submissions and the announcement of the budget itself, there is silence. The media’s focus on people with disabilities tends to involve the words ‘triumph over adversity’ or ‘inspirational’ or ‘vulnerable.’ These articles tend to also use words ‘brave’, ‘courageous’ and ‘heroic’. There is nothing heroic about having a disability, but trying to push past condescending bullshit and trying to perceived as equals who have so much to offer this country is heroic indeed.

And that’s why we need the Government to listen to us, the experts of disability and spend the money (paid by us, the taxpayers – even those who don’t work buy goods and services) the way that we see fit in order to enable us to be truly equal citizens in this country, worthy of dignity and self -respect, not merely rattling coins in charity buckets. All we want is equality, and this is something money can’t buy.

Oh, and if Enda could deliver on his promise to ratify the United Nations Convention of the Rights of People with Disabilities, that’d be just peachy.

Embracing the world of writing

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As some of you may know, I’m halfway through a six month career break, the purpose of which was to see if I could do a bit of writing. Initially the plan was to see if I could write a few articles, as well as more frequent blogs, and see where it takes me. As you can guess from the lack of blogs on here, things are not exactly going to plan. And I am starting to panic a bit because I am going to look like an ass if I go back to work in January with nothing to show for myself.

That’s not to say that I haven’t written anything at all. In fact I’m writing a story at the moment and I’ve actually written 30,000 words. This is nearly three times what I wrote for my thesis, so in a way I’m proud. In another way, I’m also thinking oh my God you dingbat, you took time out of a job that you are passionate  about to do this?! As I scroll through the pages, I think this is absolute drivel. No-one will read this, or if they do they will think you are a complete and utter twat.

Writing makes me happy. But does happy put bread on the table? I enjoy it. So do it in your spare time and see where you are in a year. I’m constantly being ripped apart by these voices who can never just agree with each other.

Then, of course, there’s the other voices. The mean voices, the ones who want to destroy your soul. This is shite. This is really shite. Who do you think you are, the next JK Rowling? Trust me, you ain’t.

–  I don’t wanna be the next JK Rowling, I just want to write some words on a page and have them mean something to someone.
– No, this is absolute rubbish. Best thing you can do is delete it and pretend it never happened.
– I think I can do this.
– Yeah, well, you  can’t, okay? You’re wasting your time. Just go and watch Eastenders, don’t worry your little blonde head about it.

But, being a worrier by nature, it does take up a lot of my headspace, thinking about things to write. And as time goes on, I’ve learned a few things about my writing habits, namely:

  1. I need to start bringing some kind of writing device to the toilet/shower, because that’s where all the good stuff happens. Only rarely does it come when Ali is in bed, and my laptop is in front of me. (Incidentally, it doesn’t come when I’m looking on Facebook, either. Funny that).
  2. I’ve started to write as if no-one will ever see it, because if I imagined anyone (especially close friends and family) reading it, I don’t think i’d write anything.
  3. Banging my head against walls and cursing colourfully at my laptop does not make the task of writing any easier. Instead, it usually calls for  two Neurofen and a nap in a  dark place.
  4. When my brain dies, I usually want to sleep, which means that there  are unwritten words out there in the wilderness. Like now. It is ten to twelve and all I want to do is sleep.
  5. Even when I can’t seem to write another word, I still can’t bring myself to stop trying, even though the inability to do so makes me  feel stupid.

God, I love writing. It’s such a peaceful, worthwhile vocation.

It really, really is.

Or so I hear.

Locked away

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For as long as I can remember, I have had an irrational fear of being institutionalised, or more specifically, living in a residential institution or a hospital.

I remember being eight years old, an age where my sense of self-awareness was growing rapidly. I was beginning to sense that I was different from my classmates. They had to tell me that I walked and talked differently, because I’d always assumed that I was no different to them. They didn’t use a typewriter. They played in the yard at lunchtime while I sat watching them. I remember complaining to my parents about it. ‘Count yourself lucky,’ my dad would say, ‘you can do so much more than other people with Cerebral Palsy.’ What the hell is Cerebral Palsy? My mum told me it was a kind of brain damage; that all of the body’s messages come from the brain, and that’s why I did things a little differently to others. That was that.

Then one night, my parents and I watched a documentary on the institutionalisation of people with disabilities during the Second World War and in the 1950s. Horrified does not describe how I felt as I watched how people were locked away by the Nazis, never to be seen again. I heard stories about people who were hidden in their parents’ attics for decades, and I thought: I am lucky. I am lucky.

That year, I would stay in Clochan House, a local respite centre, for the first time. My parents told me it was a sleepover summer camp, and indeed it was lots of fun. We did art, went on trips shopping and to the cinema, and had singsongs in the evenings. Don’t get me wrong, I have very fond memories of my time there, but the first time I stayed there I was convinced I was going to be left there, even though my mother went to great pains to tell me this wasn’t the case. That week, I learned to use a tricycle, which would be my main mode of transport for many years. It gave me independence, liberated me. I would later cycle to school and into town on a trike. I loved freedom. I lived a pretty bog-standard life. I did my Junior and Leaving Cert, went to Uni, got a degree and started working. Nothing remarkable there.

Unfortunately, not everyone agreed. In my school, I became a role model for people with disabilities and got told that I was great. I decided to compete for a place in Trinity, but knew I’d have to work hard, to the point where I made myself sick. ‘Remember that you can only do your best,’ teachers would say, their voiced tinged with concern. ‘Like it or not, you do have a disability so you will face challenges no other student would face.’ I refused to take my eye off the ball, afraid that my future would be full of endless computer courses and day centres. I have nothing against either, but that’s what you’re automatically supposed to do, as a person with a disability. You’re supposed to partake in a pre-formulated narrative. And if you do manage to fight the system and get a degree and a full-time job, then you’re great! Absolutely fantastic altogether! A real example of triumph over adversity! A pre-formulated narrative in itself.

I often think about what it must be like to live in an institution. According to the latest figures, 1,000 young people are living in residential institutions and hospitals. This is outrageous in 2015. Cuts to the adaptation grants, household benefits and Personal Assistant Services have all contributed to this problem. But institutionalisation is not just about your living arrangements. In my view, institutionalisation is spreading into the wider community. It manifests itself when business premises are not accessible for wheelchair using clients. Hate crime is also on the rise, that is, people with disabilities (including myself) being attacked because they are perceived as being vulnerable and ‘easy targets’. In my case, being attacked forced me to leave an affordable council house in Portlaoise and move back into the private rented sector. I felt I had to move back to my home town in order to have emergency contacts in case something happened to me.

I wonder how many more people out there feel held to ransom by circumstances beyond their control.

I wonder how many people are trapped within the four walls of their own homes, day in, day out, because they have to use their Personal Assistant hours for Personal Care or household duties. I wonder how many don’t see anyone else from one day to the next.

I wonder how many people, despite being in their homes, still don’t control what time they get up and go to bed at, or who is going to help them with these tasks.

When I had Alison, I had to start fighting before she was born. Fighting for the help I’d need to care for her. Fighting against the misconceptions of my parenting abilities as a mother with a disability. But most difficult of all was fighting against the negativity that I myself had internalised over the years, mirrored from a society that want to define me, keep me in my place. What if you drop her? the voice would say. What if you can’t look after her properly? What if she resents you for having her? What good can someone like you be to her?

Alison has recently started to ask ‘Why?’ about everything. ‘Why does it rain?’ ‘Why can’t we eat chocolate for dinner?’ I never want her to stop asking why things are the way they are, and as people with disabilities, we should never stop questioning things either. Yes, having to be continually vocal about your rights is exhausting. Yes, sometimes it feels as though the Disability Rights Movement is going around in circles. But if we stop challenging injustice, then not only will we be institutionalised in our own homes, but also in our minds and in our way of thinking.

And this kind of institutionalisation is the scariest and most debilitating of all.

A Crip With A Chip

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My name is Sarah Fitzgerald, and I have an awful confession. I think I have turned into an angry person with a disability. A ‘crip with a chip’, I believe we are referred to.

I hate ‘angry crips’, or at least I thought I did, until recently. I’ve come across many people in my life who I would’ve dubbed an angry crip at one stage. They are portrayed as believing that the world is against them. They seem to moan about things all the time, but yet they don’t do anything about anything, because they think it is pointless. I used to think it was laziness, selfishness, that they wanted everything handed to them. Yes, I am ashamed to say that I used to view the angry crip as some sort of moaning Michael.

As life changes day by day, so too does my perception of the angry crip, because I’m starting to think that maybe an angry crip has every right to be angry. Maybe it’s old age, maybe it’s cynicism. I personally think it’s I-don’t-think-I-can-take-more-of-this-crap … ism.

In my previous blog, I wrote about the expectations we have of ourselves and how we sometimes go to extremes to meet these. Some of these expectations come from within, but there’s no denying that society and consumerism create them too. When my daughter Alison sings ‘Let it Go’ and particularly ‘don’t let them in/don’t let them see/Be the good girl you always have to be,’ I cringe inside. I know Elsa sings them with irony, as a reminder that society expects women to act a certain way. I just don’t want my daughter to feel pressured to become anyone less than who she is inside.

I must confess that over the years I too allowed myself to aspire to perfection. A grade-A student in school, who from the outside struggled through adversity and completed the Leaving Cert. Teachers would look at me in awe; I would look at them like they were demented. ‘But you still get on with things, despite everything, aren’t you great?’ they would gush at me. My parents never said this to me and I love them for it. I went to college where, let me assure you, I never heard how great I was once. I wasn’t treated differently at all, and it was there that I gained a sense of what it was to be equal.

And then I was flung back into the real world. A world where people stare at you while you’re having your lunch, having full-blown conversations about you (‘the one from the telly’), your walking (‘she’s very shaky, God love her’) and your disability. This used to not bother me at all, but now it’s difficult to resist the urge not to go over and say ‘I’m sorry, can I help you? introduce you to the art of whispering perhaps? Because I can hear what you’re saying from the other side of the restaurant.’ But I never break my resolve, and you know why? Because I don’t want to be known as the ‘crip with a chip.’

My resolve has been tested so much over the last few months. I watch as people can’t access education and employment because there are too many obstacles. I was in a queue in the bank recently, in my wheelchair, and a woman said to the person who was ahead of her ‘I need to hurry up cause I have my mother in the car in the wheelchair space so I wouldn’t need a ticket.’ (When I told her this was wrong, she ignored me.) And you know, the usual that all of us put up with at some stage or another: the taxi man asking my friend who was putting me into the taxi where was I going (I didn’t know, apparently); a shop assistant taking my wallet off me, looking for change because I was taking too long to find it; a woman asking me where my mother was as I dropped my handbag and started scooping up all my change (‘Who is with you?’); people talking over my head (‘she wants the chicken roll’). And you are expected to keep schtum and smile. Well, sorry, no. I’ve had enough.

Two things tipped me over the edge today into writing this ranty blog. The first was seeing an interview of two veteran disability activists from the US, Ed Roberts and Judy Heumann (who I met in 2011). The interview took place in 1984 and Roberts and Heumann were talking about the need for people with disabilities to have more control over their own lives. ‘There is a lot more to life than being physically perfect,’ Roberts said. Judy Heumann said, ‘Disabled people have to fight harder in order to be able to make it in the system… if they want to live the life that they want.’ In their opinion, people with disabilities need to be seen in positions of power in order to be taken seriously, and they need to work together in order to achieve this. Judy adds: ’I question whether disabled people have achieved democracy and solidarity’. Although this interview is thirty years old, it is unfortunately still relevant today.

Then I opened the local rag to reveal the headline, ’24 hours’ notice required if assistance needed to get on train’. For a moment I thought I’d entered some sort of time warp, but no, this was an article written in 2015. I was outraged and posted this on Facebook immediately, to which some of the responses included, ‘yeah, this has always been standard practice in our local station.’ Eh, really?! How can anyone think this is okay? Have we become so complacent as a society that we not only witness discrimination every day, but think that it’s to be expected? That it’s now just a part of our psyche, part and parcel of having a disability?

No, sorry now, but from where I’m sitting I’d rather be perceived as the angry cripple and be vocal about these very real issues than give into the status quo and say nothing. Because if we don’t start channelling this anger into making real changes in our society, then we might as well watch all of our human rights slowly disappear. And if we don’t start making these changes, us ‘crips with chips’ will always have something to be angry about.

Enough is enough

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I’ve decided to take a career break from work. Six months, to be exact. It’s something that I’d been toying with for a while but couldn’t quite bring myself to do. I work in the area of Independent Living and I’m passionate about the rights of people with disabilities. I love working with my fellow leaders. But I also love writing, and I want to have more time with my daughter, so I’m off. And it is blooming scary, I tell you. Not only because I’m not bringing in a wage, but because I’ve always worked, it’s a crucial part of my identity.

That said, I will never regret all of the time I’m enjoying with my daughter, who is now three-and-a-half and great fun to be around. She’s energetic, imaginative, cheeky, and growing up all too fast. I admit that there was a time when depression clouded my time with Ali; everything seemed hard, an effort; I didn’t think that I was enough for her. But now that I feel more like my old bubbly self again I intend to enjoy every second with her.

Since Alison was born, I’d always been afraid that I’d never be good enough for her. I was overly conscious of how I was perceived as a parent with a disability. I worried that Ali would resent me for having her, that I would become a burden on her. I’m not at all afraid of this now. Today, Ali and I walked to the shop alone together for the first time, me in the wheelchair holding her hand, her on the inside of the path. It was the best feeling in the world, because heretofore I wouldn’t have trusted myself to do this. I am finally starting to see myself through my own eyes again, not through the eyes of others.

It’s amazing how we expect so much of ourselves, but we never step back to admire what we have done. We don’t have time, we are too busy, it’s not enough. For example, I told myself that I would be an established journalist with my first novel written by the time I was thirty. I wanted to be fit and able to walk everywhere unaided so that I could keep up with Ali. Since turning thirty, I’ve been bitterly disappointed in myself that I’ve done neither of these things. It was more than disappointment, it was pure disgust, self-abhorrence. It sounds dramatic, but for months I could barely look at myself in the mirror without this disappointment washing over me.

Recently, however, something changed. And for all the things I teach my daughter on a daily basis, a month ago, she taught me the most important lesson of all.

It was evening-time. Ali and I were watching telly and I said to her, ‘I love you,’ to which she replied, ‘ I love you too mummy’. I thought for a moment. Lately, I’d been feeling grossly inadequate: I’d been in too much pain to play football, too tired to play chasing and I’d say she would have baulked at the sight of another defrosted spag-bol, cooked in bulk about a week before. ‘Ali,’ I said, ‘how would you like a new mummy?’

Ali was intrigued. ‘A new mummy? Is she nice? Who is it?’

I replied, ‘I don’t know yet. But this mummy would be super cool and play football and basketball and chasing and tie up your hair and do your buttons and go for walks. Well, what do you think?’

Ali shook her head and looked at me, placing her small hand gently on my shoulder. ‘I don’t want a new mummy. I just want you.’

Pathetic that I should need such reassurance from a three year old, but little does she know that those four words, ‘I just want you’, have changed my life so dramatically. Physically, the aches and pains seem to have faded significantly. I have more energy and a new positive outlook on life. I feel I can do anything because this little person looks up to me. I just want you.

And being so happy has made me realise that my fantastic husband is still my best friend. He has been incredibly supportive and just wants to see me happy. He is more than happy to see me tapping away on the laptop, trying to come up with literary masterpieces. He never tells me that I am crazy or deluded, though I am probably both!

From an early age, we are encouraged to compete against each other. In school, we are encouraged to study hard in order to be the best. Even under-tens partake in handwriting competitions, poetry competitions and art competitions, we have sports competitions. When we are eighteen, we sit the most competitive exam invented, the Leaving Cert, in order to get high points, to be accepted into a course so that we can pursue a challenging career. We push ourselves to be the best employees, the best friends, the best partners, the best parents, often to the detriment of our physical and emotional health.

And now, I’m saying enough, or more specifically, that I believe that I am enough. I will still give my all to everything I do, but I won’t be beating myself up if I don’t succeed. Today, at least, I feel happy and free, and if my daughter and husband still love me in spite of the self-berating and toing and froing I’ve been doing over the last few years, then I must be doing something right.

Schooldays

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A couple of weeks ago, John Paul and I finally got around to dropping in the enrolment forms for Alison for primary school, which she is due to start next year. We’ve spoken to lots of parents about their opinions of what school might be best, and based on this we have nearly decided which school would be suitable. I’m not telling, but needless to say, standards and class sizes are factors in this important decision. As long as Alison is happy, I don’t really mind. Her happiness is everything to me.

Enrolling Alison in primary school has brought back memories that I thought I’d long forgotten. I started school in September 1989 at the age of five. I obviously don’t remember this myself, but I know that my mother had to beg the principal to let me into the school. There was a ‘special class’ on site in prefabs, which would’ve been suitable for accessibility reasons but stood separate from the main school building. My mother wanted me to be integrated as much as possible and finally, after much coercion, the principal agreed that I could join Junior Infants, specifically Mrs. Dowling’s class.

Mrs Dowling was so kindhearted and soft that I couldn’t believe my luck. On my first day of school I sat beside a girl called Emma, who remained a close friend all through primary and secondary school. I was a novelty, but school was the first time that I felt any different from my peers. I had to be wheeled about in a buggy for my first year in primary school. Children would be told, both by teachers and parents that ‘Sarah is very delicate and walks differently from other people.’ Delicate, my hole. I was clumsy, but sturdy. Yes, I was easily knocked over, but I could pick myself up just as easily. After a while, it was more like ‘Get up off the floor Sarah, you look like a tool.’

Indeed, I don’t remember primary school as being one of the most dignified times of my life. I remember in Junior Infants there was a box of old trousers and underpants under the teacher’s desk, in case somebody had an accident. If ever there was an incentive not to soil yourself that was it. God only knew who had been wearing those pants beforehand.

As if being wobbly and misshapen wasn’t quite enough to separate me from the pack, I was awarded an electric typewriter, possibly a state-of-the-art machine at the time, that sounded like it was coughing every time a letter was pressed, and a machine gun every time the eraser was activated. Because my speech was seemingly unintelligible, the typewriter doubled up as a communication device. I think I ended up costing a fortune in ink! There were no laptops at the time, but there were Acorn Computers which needed lots of complicated codes to access. These were only available in the Resource room at first, but soon there was a computer per classroom.

It was in primary school that I started to develop a lazy work ethic, and I think being sternly corrected for my antics have left me with a phobia of being lazy or not reaching my potential. In third class, I told the substitute teacher that my parents had decided that I shouldn’t have to do homework because they were afraid that it would tire me out. I got away with playing computer games for a whole month because I acted as if I was so stupid in class that the sub evidently thought that there was no point in teaching me. Needless to say, that when my parents were confronted about my antics, they were so mortified that they couldn’t summon up a punishment severe enough. Actually, this is untrue; until the day she died, my mother would casually bring up this particular incident in order to frighten me into achieving my potential.

I also went through a delightful phase (that only ended towards the end of first year of secondary school) of wanting to write down everything by hand. I wanted to be like everyone else, and if my disability wasn’t enough to stop me getting homework, then at least I should be able to write with a lovely fountain pen just like my classmates. Problem was, of course, that teachers are not trained to read Ancient Greek. By the end of first year, I succumbed to using a laptop and computer for classwork, but only because it was a modern Windows 95 and not the ‘abomination’ with the illuminous green screen that had been donated by Dad’s work colleagues. I would have nightmares about pressing the wrong button and breaking it. Even now, my parents don’t believe me.

I wasn’t really allowed partake in mainstream PE, but I was given a gym mat in the corner where I could do my physio while the others played games. Hmmm, fun. Not. However, I did enjoy a few sessions of Irish dancing in my older years, and I was allowed on the trampoline a couple of times. Needless to say, however, I was not chosen for the basketball teams. As I got older, I was allowed to bring my tricycle into sports day at school and I would spend all day cycling around the town park, cheering on my friends.

Indeed, primary school wasn’t all ‘doom and gloom’ and I remember crying for days when I left sixth class. It was in primary school that I decided, with some conviction, that I wanted to be a writer. Primary school taught me that with equality comes responsibility, and that if I wanted to be respected and treated with dignity and credibility, I would have to prove that I was worthy of this. I also learned that being outside the ‘popular’ circle was not a bad thing, and I never felt pressured to be anyone but the needy social misfit that I was (am!)

And now, as my precious daughter grows older and nears her own primary school adventure, I hope that she makes her own memories that she can look back on with fondness. I hope that she won’t get teased in the yard for having ‘wobbly’ parents. Most of all, I hope she has fun. Though if she could find fun in activities that didn’t involve manipulating her teachers like her mother did, I’d be grateful.