A Crip With A Chip

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.

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Enough is enough

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

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.