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.

The Sarah Fitzgerald Guide to Raising Toddlers

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I would like to reiterate that prior to having my beautiful daughter, I knew nothing about children. I didn’t know anything about pregnancy, childbirth (I now think this worked to my advantage) or caring for a newborn. In fact some evenings, when I tell my husband that I’m working or ‘studying’, my mind wanders and I somehow end up on Google looking up ridiculous things such as ‘normal three year old development’ and ‘how to encourage your toddler to read’. Yep, I’m a little crazy, but Ali didn’t come with a manual and I don’t always know what I’m doing. Do ye?

The best teacher, of course, has been Ali herself. Of course, it’s my job to teach her right from wrong and how to be a sensible, well-rounded person, but she has also taught me so much about the world around me and how to best respond to her needs. I’m not sure if any of the following skills can be applied beyond the privacy of our house, but for those of you with kids that are three or younger, you may/may not find the following advice useful:

*The following is copyright of yours truly and cannot be found on any internet site*

  • You will suddenly find yourself unashamedly fascinated by your child’s toileting behaviour. Pervy? A little, but unfortunately necessary. If you are lax it may result in a disgusting accident that I imagine my childless friends would have nightmares about. For parents of toddlers, it’s just another day at the office. My daughter won’t let me into the bathroom until she has done her business, but the conversation between her, and I standing patiently outside the door, usually goes like this:
    Me: What are you doing, wee or poo?
    Her: Wee
    Me: Did you wipe your bum?
    Her: I’m already dry.
    Me: WIPE YOUR BUM. I’m coming in to help.
    Her: Don’t look at my bum.

On a related note, the luxury of privacy is not afforded to me when I need to go for a piss.

Me: Can you wait outside please?
Her: Mummy, I love you.
Me: I know. I’ll be out in a sec.
Her: Wee or poo? Oh I hear a wee, good girl mummy!

On another related note, sniffing a stain to ascertain if it’s chocolate or poo. Without reservation.

  • Toddlers are particular. Sometimes Ali gets a notion that she can only drink out of a pink cup. She has to have a special pink teddy going to bed. And if you tell them to eat three more bites, they will only eat three more bites.
  • Toddlers don’t understand ‘Mummy’s tired/sore/too lazy to play with you’. Not only do they want you to play with them, they want you to become fully involved in their imaginative play. Now don’t get me wrong, kids are kids, but there is something degrading and plain wrong with crawling on your hands and knees around the garden and mewing like a cat/barking like a dog. What, don’t tell me I’m the only one that does that? Ye haven’t lived!
  • Young children tend to imitate what they see and hear. I was getting a little frustrated the other day and said to Ali, ‘Right, let’s swap places. I’m Ali, you’re mummy.’ Excited by this new game, Ali readily agreed. When ‘mummy’ asked ‘Ali’ to eat her dinner, I said ‘no, don’t like it,’ and pushed away the plate, and  ‘mummy’ responded by saying ‘right. No Jumping Jacks and no playschool any more’ and I just thought to myself,  ‘wow, I am so annoying.’
  • It’s against every rule in the book, but occasionally you will have to resort to bribery. Recently, I promised Ali a few Buttons when she ate all her dinner, and by God, the second the last morsel crossed her lips, she instantly asked for the Buttons. Sometimes, Ali can be disappointed. For example, just tonight I was encouraging her to put on her own PJs and hearing my hubby come into the house, I said, ‘I have a surprise for you’. she put her pyjamas on faster than lightening and her daddy came in, delighted to have made it home for bedtime. Ali looked at him and said ‘where’s the surprise?’ to which John Paul replied ‘I am the surprise’. Thinking we were joking, Ali smiled and said, ‘No, really.’ I felt the love. I know JP did too.
  • Toddlers/young children can be a little economical with the truth. A few months ago, I caught Ali drawing on the floor behind the couch in the sitting room. I of course hit the roof, but Ali said, ‘no mummy, it wasn’t me, it was my friend’. (Ali was holding the marker in question in her hand at the time, and her friend wasn’t in the house, at all). She also told an elaborate lie one evening about a cat who broke into the house and stole her good flowery jacket and carried it off to his family. Damn you, neighbour’s cat and your jacket-stealing tendencies.
  • Toddlers can also be very sensitive. Around the time of my mother’s anniversary, I was a bit teary and Ali discovered me crying in the kitchen. ‘Mummy, what’s wrong?’ she asked. ‘I miss my mummy’ I explained. ‘Oh, here’s a big hug and a magic kiss, and now you feel all better.’ Little hug. Silence. ‘Mummy, are you okay now?’ ‘Yes hon’. ‘Great, you’re Elsa, I’m Anna’. (on a bad day, I’m Olaf the snowman).

Ultimately, raising a toddler has been one of my most interesting and insightful experiences to date, and while I may not always get it right, we all have fun learning through our mistakes. And Alison has tremendous fun testing the boundaries. Well, they say kids learn when they’re enjoying themselves, right?

Alison has not only taught me how to be her mummy, but also how to be a better person. I’ve become more patient, more understanding, gentler (to Alison, anyway. JP may beg to differ). Most importantly of all, she gives me great hugs and superb writing material, so thanks hon. Love you! xxx

Why getting an English Degree was so absolutely Important

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I am very proud to say that I have a degree in English Studies from Trinity College Dublin. One of the most prestigious colleges in the world. This degree has become my trump card when telling people I don’t know about myself, especially with people who tend to dismiss me because (a) I’m blonde (b) I’m a woman and (c) I have a disability. I chose to do English because I was really good at it in school. I didn’t want to do computers or any course that was perceived as being ‘suitable’ or ‘useful’ for people with disabilities. (This is what my husband did instead of doing the courses he really wanted to do, primary teaching or accountancy). I was top of my English class, so it seemed like a logical move.

However, my choice to study English in College has been the subject of some very awkward conversations that usually go like this:

Randomer: So, what do you do?

Me: Well, I’m a PRO for a disability organisation. (Pause. Then wanting to sound intelligent, I say) But I also have an English Degree from Trinity.

Randomer: Wow, Trinity College. Well done you. You must be very intelligent.

Me: (bashfully) Oh I don’t know.

Randomer: (Impressed pause) That’s truly amazing. (Another pause, during which I can see a look of confusion creeping onto my companion’s face). So, what does that qualify you to do?

Me: Well, technically I’m a literary critic.

Randomer: A what?

Me: A literary critic. You know, like, I can read a book or a poem and tell you about the language, the intent of the author, and most importantly, if there is underlying sexual connotations. (Note to the uninitiated: there are always underlying sexual connotations. If you can’t see it, you are obviously not looking hard enough).

Randomer: Thank God you were born.

If you’re thinking that I should have been awarded a degree from the National College of Bullshit, you would be right. Because the English Studies course I read was amazing, a real ‘must-do’ for any lover of literature or aspiring writer. I was taught, and constantly surrounded by, geniuses who had written volumes of books and papers on topics such as Shakespeare, Post-Colonialism, Poetry, Irish Women writers and many more diverse and interesting topics. These were truly intelligent people and I felt like a dumbass. Here’s some examples of how this idiocy manifested itself during my college days:

  • My first tutorial: We were introduced to each other and then asked to name the last book we’d read. I panicked and, unable to lie, I dutifully revealed that the last book I’d read was Life of Pi. The lecturer proceeded to ask me what struck me about the book, to which I replied ‘The striking relationship between animal and human and the theme of interdependency’. Agreeing, she asked me to elaborate, to which I replied ‘you know, your man, and the tiger, on the boat together, not killing each other.’
  • We took a course called Old English. Old English is not like ‘hear ye’ stuff, it’s like ancient Greek, and we had to translate texts such as Beowolf (can’t remember the others, sorry). I spent hours translating them word by word, but it annoyed me when I read out my word-for-word translation while my classmate read out his/her translation, grammar and syntax perfect. I felt stupid until I discovered that my classmates had got their hands on the already translated version by Seamus Heaney (or some other translation). Then I felt ridiculously stupid.
  • We also read Chaucer and Marlowe, with their use of ‘u’ for ‘v’, ‘y’ for ‘I’, double Fs and all that stuff. But those texts were much easier than the dreaded Piers Plowman. I went to the lecture on Piers Plowman for clarification on the meaning of the book, only to hear something about sheep eating mud. Useful. Not.
  • It took me two years to figure out that rhetoric and discourse are just fancy-schmancy words for language. When someone spoke about post-colonial/feminist ‘discourse’, I would write in the margin, for the hundredth time that week, ‘look up “discourse”.’ Thankfully, I grasped these difficult concepts just before my final exams (and before writing a thesis on the subject of female discourse in Shakespeare’s plays).
  • In fact, the only time I failed an essay or exam was in second year, when I  thought I would  get away with using the same text for two questions, even though it specifically stated on the paper not to do this: ‘You must not substantially repeat material’. Well, according  to Roland Barthes’ The Death of the Author, what matters most is what the reader interprets from the text, not what the author intended by writing it. I therefore read, ‘Go on. Use the same material for two questions. They’ll never notice. Plus you haven’t read any of the other texts so you don’t have much of a choice.’
  • I often bullshitted my way through tutorials using only the blurb on the back cover as a guide. Come on, where are you supposed to get time to read 6-8 novels a week in between one of your twelve one-hour lectures? The most memorable occasion was when I gave a presentation on H.G. Wells’ The Shape of Things to Come. I’d read the first 300 pages but didn’t have time (ah, elusive time) to read the ending. So I gave the presentation and I’d finished giving my general interpretations when the lecturer asked the class: ‘So who got to the end, apart from Sarah and I?’ Silence. ‘Okay Sarah, why don’t we enlighten them?’ ‘Of course! Er, why don’t you go first?’ Laughter. ‘Sarah, did you read the ending?’ ‘Er, not so much, no.’ Endings are apparently important in an apocalypse class. In my defence, I only had sixteen weeks to prepare for this presentation, in between these twelve one-hour lectures. Come on, I’m not Superwoman.

Laziness and fabrication aside, I’m glad I had the opportunity to go to Trinity and study English, which was taught some of the most intelligent and insightful academics in the field. And if nothing else, being able to say you have a degree from Trinity seems to be a significant achievement. Now that I’ve exposed my deepest secret, I’m off to hide my parchment somewhere before it is pried off me.

Feck off. It’s mine now. I’ve earned it.

Kind of. *This blog was inspired by a fellow classmate’s Facebook status today*

Equality for all

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It’s the night before the Marriage Referendum. I’ve read articles and stories from both sides and I’m ready, as the slogan urges us, to vote Yes for equality. But being who I am, I can’t turn off my thoughts about the word ‘equality’ and what it means in 2015. And here’s why.

I know that I use this blog to prattle on and on about the importance of disability rights. I am aware of how one-dimensional some of my posts may seem to those of you who know that I am more than my disability and am proud to know Sarah (this isn’t directed at any dads in particular by the way). But here’s the thing: despite being periodically frustrated by my limitations, I have embraced who I am. I know that I try to be understanding, accepting and tolerant of all others, simply because that’s how I expect to be treated, even though it is not always the case. I laugh off the insults, the condescension, the ignorance because at the end of the day, it shouldn’t really matter what people think of me. I am who I am, regardless of the labels people throw at me.

Over the last few months I have listened, watched and read arguments in favour of, and opposing same-sex marriage. You haven’t been able to avoid it unless you live under a rock; it was even on the front page of the Tullamore Tribune this week. Politicians, celebrities and ordinary citizens talking about which way they are voting in the Same-sex marriage referendum. People sharing their experiences of what it’s like to be gay in twenty-first century Ireland. It’s amazing how this referendum has forced people to face such a taboo subject head-on. To examine what it means for people living in shame of who they are. To explore people’s anxieties and deconstruct their misconceptions. To hear both sides argue their cases so passionately.

Ireland has progressed so much, people say. But allowing same-sex marriage won’t stop homophobia or hate crime. And although so much has been done to ensure that Ireland is becoming a more accepting and understanding society, I have to admit I still don’t feel it.

In the last two weeks two separate incidents involving people with disabilities made the headlines. The first was a man who was left on a train when the ramp was not provided to let him off the train. He was let off twenty minutes later, and he commented that never before had his disability made him feel so vulnerable. The second one was a woman who was denied access to a Dublin Bus because a buggy was occupying the wheelchair area. One wheelchair space for fifty-odd seats seems a bit discriminatory anyway. These are not isolated incidents, as I know only too well from working in the disability sector; everyone has a story to tell about public transport in Ireland.

How can Ireland be viewed as being progressive if there are still people in society who cannot even access basic services such as transport? Why are we still highlighting the same issues over and over again?

I thought I was being paranoid, so I decided to do some actual research. According to a report by the National Disability Authority in 2011 on attitudes towards people with disabilities, the number of people who believed that ‘it is society that disables people’ fell from 62% strongly agreeing and agreeing in 2006 to 57% in 2011. Not a significant drop, but a drop nonetheless. Furthermore, there was a decrease in the number of people who think that people with disabilities should be treated more favourably in certain circumstances (i.e. when their disabilities prevent them from doing things that a person without a disability could do) from 80% in 2006 to 68% in 2011.

It occurs to me as I read these statistics that the changes in the attitudes of those who partook in the study may be due to the onset of the recession. Since 2008, funding that was once earmarked for disability services has been restricted and the needs of people with disabilities have had to be prioritised. Every year disability organisations make pre-budget submissions, outlining how further cuts will have devastating consequences for their clients. When you have a disability, you become costly; a report launched by Inclusion Ireland in September 2014 estimates that the extra cost of disability is roughly €207 per week. That’s not even provided through our (means-tested) disability allowance. And because of this people with disabilities are more likely to live in poverty; many are caught in a welfare trap, afraid to move into employment in case they lose their secondary benefits such as medical cards and travel passes, and consequently they are either seen as spongers or dependent on the state.

How is this equality?

Tomorrow’s same-sex marriage referendum will come and go, and whatever the outcome, one thing is for certain: this referendum has given so many people a platform on which to relate their personal experiences, voice their opinions, and persuade the people around them of the merits and disadvantages of same-sex marriage. Giving the Irish people the opportunity to vote for same-sex marriage empowers the people and puts the potential of equality for same-sex couples in their hands.

Imagine, this time tomorrow, the right to marry your partner regardless of gender could be a reality.

Maybe, one day, equality for people with disabilities could be a given, too. But in order to achieve this, we need to be more vocal, more visible. We need to make sure that our voices are always heard. Not just around election time but every single day. Only when true equality exists should we fall silent.

PS Yes Equality!

Just a date

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It’s funny how the human mind can make associations, how a chill in the air or a familiar smell can wash over you and bring you back to a time and place that you thought you’d never have the good fortune/grave misfortune of experiencing again. For example, when I see my own breath fog up against the black sky for the first time every October, I know that Halloween is just around the corner, with Christmas nipping furiously at its heels. I know as I chomp on a contraband Easter egg after Alison has gone to bed at night that the slight red tinge in the sky is signalling the arrival of summer. I smell the barbecues, the freshly mown grass, the faint titter of laughter wafting gently through our windows.

And despite the improvement in the weather (well, normally. At the moment it is freeeeezing), I begin to feel cold, heavy, wary. Sometimes I feel sick with restlessness and anxiety as memories, good and bad, swoop in and strangle me until I can’t breathe. May used to be my favourite month of the year, and in many ways, it still is. For me, May signifies the beginning of the end of school and college. It reminds me of a photo that was taken of my brother and I when I was five, celebrating my brother’s ninth birthday on 18 May, just me and him, with an icecream log. Mum wasn’t there because she was recovering from her c-section; my sister had been born almost a fortnight beforehand, on 7 May 1989.

Exactly twenty years later mum closed her eyes for the last time.

I’m sure that it’s an absolute bitch for my sister to have to share her special day so selflessly. I’m sure that no-one wants to sit around moping on their birthday, getting all maudlin about the past. Birthdays should be happy days. Personally, though, I’ve always found birthdays to be a bit of an anti-climax (apart from my 21st when John Paul proposed in front of my family and friends. That was an awesome birthday), to the point where I would actually rather if the day came and went without being marked or acknowledged at all.

And for years I felt the same about my mum’s anniversary, which I try in vain to separate from my beloved sister’s birthday. Can the two be separated? It’s a struggle every year to experience such happiness and sadness at once. How have I managed it? Trying to pretend that the anniversary didn’t bother me, that’s how! Oh so it’s mum’s anniversary today? Well, she was dead yesterday and she’ll still be dead tomorrow, so what difference does a date make? It’s Laura’s birthday, let’s not forget that!

Trying to deny the sadness didn’t work for me in the long run, and last year five years of suppressed emotions hit me suddenly like a freight train. I had to take a considerable length of time off work to feel normal again. Note to the readers: don’t bottle up your emotions. They will come back when you least expect and bite you on the ass. Hard.

For the first couple of years after mum died, I went through the motions. For the first anniversary, I insisted on holding lunch in our house after the anniversary mass for all my relatives so that I didn’t have to face my emotions. It worked; I was so busy in the lead up to the event that I barely had time to think. The second anniversary, I stood beside the grave with my aunt, husband, sisters and brother, then proceeded to go out that night and get wasted (in the name of celebrating Laura’s birthday of course). By the third anniversary, I had an almost three month old baby with terrible reflux and I spent the whole day crying because I felt like an inadequate mother. I had been so hard on my mother and yet, she managed to raise four of us. At that stage, I was seriously debating whether I had it in me to raise one.

Yet somehow mum was there, guiding me. Some days, it just wasn’t enough. I needed to hear her voice. I longed for the opportunity to ridicule her childraising advice. I wanted her to tell me I was doing something wrong, nagging me to the point where I’d lose it and ban her from seeing her only grandchild. I needed her to remind me that I was not alone. And she did, in her own way. I managed to push past the fear and the preconceptions I had of myself, and do the very best for my child, the way my mum did for me.

This year, I will try to embrace the date and try not to suppress my emotions. I promise to allow myself to feel the dread, the sadness, the emptiness. I will grieve for what we lost, as well as what we could’ve had. Most importantly, I will remember that the 7 May is a day of happiness and celebration, and acknowledge that people enter and leave our lives in the strangest of ways. And even though this day is tough, simply because of a date on a calendar, I will be thankful for the fact that I had such a wonderful mother who gave us a sibling who is intelligent, beautiful and loving. (Laura, I can hear your head exploding from here).

For me personally, 7 May will always be a strong reminder that good things happen, and bad things happen, and after they do, all that is left are memories, both beautiful and terrifying.

Rest in peace Mum, and thank you for bringing Laura into all of our lives. I think of you and miss you every single day. And happy birthday sis, make sure you fill your special day with lots of wonderful memories. xxxx

The scourge of the ‘Mummy Wars’

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It is the greatest privilege in the world to be a mummy, though there are days when I ponder why God (the higher power I believe in) would allow such a fickle, clueless woman such as myself to have children. I’ve said before that prior to having my daughter Alison, I did not have the slightest clue what raising children involved. My hesitancy to have children was directly related to my complete lack of knowledge of what was involved. I was certain that it was hard work; I had many a friend bemoan to me about how they had become social pariahs since having children.

I knew also that there would be sacrifices when having children. I was told that I would always be broke because the cost of nappies and formula is ridiculous. Children also tend to outgrow their clothes and shoes quickly. Then there’s the cost of childcare, school and, eventually, college. I mean, why bother? All the little brats seem to do is sap all of your financial resources!

If I was totally unprepared for the role of care-giver, then nothing could have prepared me for the phenomenon of the judgemental mother and the power that other mothers had to make me feel shit. Some say that there is no right way to parent, there are no rules. This is a lie: there are too many rules and the goalposts are constantly shifting. You can’t do right for doing wrong when you are a mummy.

The question mummies seem to get wound up about the most is whether or not they should be out working. Because women are choosing to delay having children until their careers are established, many are reluctant to leave the workplace when junior arrives. It wasn’t too long ago in Ireland that women had to leave their jobs once they get married. Now, despite having the option of staying at work, many mothers struggle with the guilt of missing out on precious moments with their children. This tug-of-war is compounded by the ridiculous cost of childcare, which leads many to question whether they are doing the right thing.

Alas, are mothers ever doing the right thing? Why do we, as mothers, judge each other so harshly? Is it mainly to validate our own choices? And unless these choices are adversely harming our children, why do we feel the need to justify them?

It seems that you can’t win in the mum world. If you are a working mum, you are judged as being selfish, farming your children out to be minded by other people while you pursue your career. If you’re a stay-at-home mum, you should have time to keep your house spick-and-span, your children spotless and a nutritious meal cooked from scratch every evening. If you wear comfortable clothes, such as trackies, you obviously don’t give a shit about your appearance. But if you decide to dress up, or ‘do’ your hair and makeup, you have too much time on your hands, time that could be otherwise invested in raising your children.

A campaign was launched in the US in late 2013 called ‘End the Mommy Wars’, which encourages mothers to be proud of their own parenting choices and not to judge the choices of other mothers. As part of the campaign, mothers were photographed holding placards such as ‘I breastfeed’, ‘I formula-feed’, ‘I work outside the home’, ‘I’m a stay-at-home mom’. These women are trying to remind us that each mother has their own value system, and try to do what is best for their children based on this belief system. None of these choices are ‘wrong’ but they are intensely personal. The campaign aims to deconstruct the ridiculously high standards mothers set for themselves and others and instead to support each other and to understand that our way of parenting isn’t the only way.

Pressure on mothers is both external and internal. Every day, we are bombarded by images of the glamorous mother in the media; the mother who has time to get her hair and nails done; the mother who juggles five bags of shopping and two smallies with her mobile phone; the mother who runs her own business in between baking organic cookies with her kids. Let me tell you that the stay-at-home mum in her trackies who is constantly wiping puke out her hair and spends the day cleaning after a mini hurricane and hoping to God that the brown smudge on her jeans is chocolate and not poo (again) is equally as deserving of our respect.  Other mothers are increasingly yardsticks for us to measure ourselves against, and invariably we either don’t meet the invisible, ambiguous standards, or we feel superior to others, as if others’ shoddy parenting somehow justifies the choices we make for our own children.

I often wonder how strong this tug-of-war was between mothers in the ‘eighties. My mother isn’t around to regale me with such tales, but I’ve read accounts on the Internet and from this I’ve devised an unrealistic utopian lifestyle: mummies from the same neighbourhood befriending each other and inviting each other for coffee; in the absence of work, mothers needed to meet each other to stay sane. I remember my mum exercising her intellect with our neighbour Patricia, over Scrabble and cups of coffee. I remember Alice and Maureen popping in for coffee or wine, depending on what time of the day it was (although sometimes the time of day didn’t really matter !). Mum’s not here to answer my questions but I wonder did she feel the pressure I and other of my generation feel now. (Anyone who would care to admit that they’re of mum’s generation are welcome to discuss this in the comments section).

As a child, I remember us three girls wandering the streets of our estate on our bikes, sometimes till 10pm on a summer’s night, with no mobile phones to let the folks know that we were okay. And yet, despite our mum not being a helicopter parent, we kids turned out okay. I’m not sure I’d have the confidence to let Alison have the same kind of freedom. Every day it seems a child is abducted or goes missing. God forbid, if a child were to be abducted, who is at fault? Do we sympathise with parents, or judge them for their carelessness? I know I would probably judge, so what does that say about me?

I have spent three years of my life trying to be perceived as a capable and worthy mother for my little girl. I went on television to talk about how acutely aware I was of how people judged me for being a disabled mother, because I was worried that people would think that my daughter would be deprived in some way. But deep down, I don’t think I was trying to prove anything to anybody other than Alison. She’s the only person who will ever be able to say whether or not I am a good enough mummy for her. At the end of the day, every mother wants to do the best by their child and hell, it’s difficult enough pandering to the every need of your children without constantly wondering what the woman across the street thinks.

Enough.

I may not be the perfect mummy, but I will always strive to be the best I can be. I know this applies to every single mummy I know.

(Psst, you, yes you, well done. You’re doing a great job. Let’s hold each other up instead of tearing each other down).

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