Category Archives: Disability

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.

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!

Owning my limitations

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I have a confession, and anyone who knows me will appreciate how difficult it is for me to say these words. I think I may have some limitations. When they read this blog, my husband and my dad will probably read the italicised sentence a few times, just to make sure they read it correctly. I hate admitting I can’t do things. Quite frankly, failure makes me feel weak and pathetic, and instead of learning from these experiences and moving on, I persevere until I’m certain it can’t be done.

Alison has recently started nagging me to teach her how to use a skipping rope and hula hoop. As I have serious coordination issues, I can’t do either, and it makes me feel stupid. I fob her off with ‘someone else will teach you’, but sooner or later she will want a straight answer to these questions and just like that, I will be forced to once again accept my shortcomings while hating myself just a little inside.

There was, of course, a time when I was completely oblivious to what my limitations were. Here are some of these times. Rest assured that I am sitting here blushing behind the glow of my laptop screen.

  • I love writing, as in writing things down by hand. To feel the pen glide (or dart when you have involuntary movements) across the page is one of my guilty pleasures. Alas, my handwriting makes the doctor’s worst scribbles easily legible. As a child, I loved writing in notebooks and diaries (as all little girls do) and fought tirelessly with my parents because I couldn’t see why I couldn’t write like the other kids. I wrote all of my Leaving Cert notes by hand because that’s how I remember things best. My parents cruelly forced me to use a computer and laptop instead. Sure, doing so enabled me to go to university after doing my Leaving Cert, but that’s not the point. I will never admit they were right (pig-headed, moi)?
  • I spent about a month when I was eight trying to cycle a normal two-wheeled bike with stabilisers that Santa had brought me. It was only after about seven falls, countless bruises and a deep scrape that went from my thigh to my ankle that it dawned on me that this wasn’t going to work.
  • I tried both skipping and French skipping in the playground. These trials didn’t last long as I didn’t know how to jump. After a while, I gave up, but I wasn’t very happy about it.
  • I was never good at knitting or sewing, but I kick ass at weaving, as I discovered in second class. The teacher gave me a weaving loom, and with that I wove a scarf, a headband and a purse. However, when I took Home Economics in first year in school, I was given the task of making a collage while the other girls did their cross stitching and used the sewing machines. The experience scarred me to the extent that I can’t bring myself to make a collage with Ali.
  • I remember getting brochures in school about really cool summer camps that included activities such as skating, bungee jumping, Qazar, water fights, football, basketball and hurling. My parents would look at each other and my mother would say, in a suspiciously bright voice, ‘How would you like to go to a better summer camp, where you can even sleep over?’ This place was Clochan House, a respite centre for people with disabilities just like me. They couldn’t go skateboarding either, but once I overlooked the fact that I hadn’t gotten my own way, I enjoyed myself and even nabbed meself a husband! Best camp ever! (bet you’re sorry now, eh dad?)
  • I took guitar lessons in TY much to the amusement of my classmates. At the end of a three month course, I could play E minor. I’m ashamed to say that in my family, at least four of us can play the guitar. I am not one of them.
  • Much to my disappointment and relief, I will never be a slave to fashion. High heels and me = disaster. In an effort to look elegant I wore high –heeled shoes to my school grad. They came off within ten minutes as I fell over for the fiftieth time. I looked pissed, and I desperately wished I had been, but no.
  • I think my mum wet herself the day that I announced that I was going to try and get a weekend job in the Bridge House or something, as a waitress, to supplement my college income. ‘Er, your studies are far more important’, she insisted through her tittering. Hmmph.

There are times when having so many limitations can be a real pain in the ass, and it does get me down sometimes, especially when Alison asks me to skip, climb and run after her. But then I think, no, I’m not exactly like every other mum in the playground, why should I be? Time to focus on the positive:

        • I have a handsome husband and beautiful daughter
        • I can work, write and spend time with my family (although I’m still working on the balance)
        • I have a degree from Trinity College, where I learned to live independently
        • I love, and am grateful for, my life at the moment.

Don’t get me wrong, the way I am wired means that I’ll probably always be pushing the boundaries, trying to achieve the most unrealistic goals. If I achieve them, I will be delighted, and if I don’t, I’ll come to terms with that too.

But I won’t know until I try.

20 Experiences that you are likely to relate to if you have a disability in Ireland

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Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx

‘DARE’ to go to College

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I will always remember my four years as a student of Trinity College with fondness. But I must admit, there were times when I felt like a giant imposter. I was studying with some of the most intelligent minds in the country, and I remember sitting in the tutorial groups, listening to my peers talking, thinking, ‘Wow, I have not got a clue what these people mean by “post-modern” and “post-colonialism”. I wonder if my parents would be mad if I just left and became this “madwoman in the attic” I’ve just read about’.

Part of the reason I felt like an imposter was that I had asked for special consideration for the English Studies course on my CAO Form. Applying for a course via the CAO is a daunting experience for any student, but when disability or a Specific Learning Difficulty puts you at an academic disadvantage, it can mean putting more time and effort into your studies. On the face of it, I was a straight-A student, but only because I spent eight hours a day studying for the points. Honestly. Ask my husband or my dad (I would say ask my friends but I don’t have any because I spent eight hours a day, i.e. 4pm-12am, studying for two years). Even this wasn’t enough to secure me the 525 points I needed to study in Trinity; I only got 475.

Thank goodness for DARE.

DARE, which stands for Disability Access Route to Education, is a supplementary application process which complements the traditional CAO application process, allowing the candidate with a disability to compete for their course of choice, even if they do not meet the points requirement for the course. Availing of DARE also allows the candidate to inform chosen colleges of any difficulties or obstacles he/she may have faced during secondary school.  In addition, it alerts the college to a student’s existence and to be prepared to offer any academic supports, including note takers, assistive technology and library assistants.

Applying for college via DARE was  hard work. As part of the supplementary application process, applicants are obliged to include evidence of disability from an appropriately qualified psychiatrist, psychologist, neurologist or paediatrician.  These reports must be less than three years old. You may also have to complete a personal statement, outlining the challenges you faced throughout your educational journey and the impact your disability had on your academic life.

I remember when I applied for DARE, I did not really understand how the process worked. When I got my Leaving Cert results, I was convinced that I would be offered my third choice (Maynooth) instead of Trinity, which were my first two choices. I don’t think my mother was prepared for my moving to Dublin; she certainly wasn’t as ecstatic about the prospect as I was (yay! freeedom in Dublin City Centre!)

As time passed by, I gained more self-confidence and really started to enjoy College. I lived on Campus in Botany Bay and every morning I woke to the gentle poc-poc of tennis balls outside and the not-so-subtle gonging of the clock in Front Square. I would meander aimlessly around Front Square for hours, looking a little lost and demented, taking it all in while my wheelchair shook my bones going over the cobbles. I was a bit of a loner, I didn’t join any clubs or societies, I’m not really a big drinker, but I used to frequent many a coffee shop between lectures (nobody told me that you are supposed to be in the library reading when not at one of your twelve one-hour lectures, but when it mattered. I figured it out).

Trinity was one of  the best experiences of my life. I studied literature under some of the finest writers and literary critics of our time, but more significantly, the sense of belonging and community was so strong that I never felt like a ‘student with a disability’. Yes, I felt intimidated at first by how much my peers seemed to know about literature, but once I gained confidence, I too found the courage to ramble on about the portrayal of women/feminism/use of language or ‘rhetoric’. Once I stopped perceiving myself as different, I suddenly wasn’t.

And yet, the Student Disability Services, and in particular Orlaith O’Brien, Amy O’Shea (both have left), Trish Ferguson, Declan Treanor and Declan Reilly were always so supportive. I can’t speak for anyone else, but the support offered by these people (as well as many others) was second to none, and I was always listened to and treated with the utmost respect. There is no doubt that the provision of notetakers and library assistance enabled me to achieve an honours degree in English Studies.

If you are eligible for DARE, please answer ‘Yes’ to the relevant question on the CAO form. After 1 February, you will receive supplementary forms from colleges who are accepting DARE applications.

DARE is holding a number of application advice clinics in venues nationwide on Saturday 10th January 2015 from 10am-1pm, to allow students to ask questions and find out more about the scheme.  Further information is available on www.accesscollege.ie.

Facing my demons

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It’s amazing what we as human beings are prepared to do to ourselves in order to avoid facing our feelings. It may be throwing ourselves into our work, in order to make every minute so busy with activity that we haven’t a moment to contemplate anything else, or it could be self-medication with whatever drink, drugs or substance we can lay our hands on. However, there comes a point where we can no longer do this and the only way to eradicate the demons that mercilessly control our lives is to face them and disempower them. And this is exactly what I am about to do.

Almost a year ago, my husband and I took part in a documentary ‘Somebody to Love’, which explored the challenges facing people with disabilities in finding love and forming romantic and sexual relationships. Partaking in that documentary was one of the most difficult things I have done in my life. The intimate nature of the recording and production meant that there was nowhere to hide from our feelings. We were in our own home,  our own environment, laying our private lives bare for Irish viewers to dissect.

Watching the documentary back, I can see myself trying to stifle my husband’s words, trying to stop him from saying something ‘stupid’ or ‘dangerous’. By ‘stupid’ and ‘dangerous’, I mean the truth or, more specifically, our truth. Our truth is that we felt frightened and alone. We felt that we constantly had to prove ourselves, that we  knew what we were doing, when in fact we did not have a clue. We’d never cared for a newborn before, and we were terrified, but we couldn’t let it show. In short, we were denied the right to be first time  parents: to cremate the bottle, to hold the baby upside down, to make mistakes.(By the way, I am neither condoning nor encouraging this behaviour. Please read the instruction manual that comes with your child).

One of the worst moments of my life was the day my husband and I were supposed to take Alison from the hospital, It was a Monday, and I was recovering marvellously from my section. I was feeding Alison well, and she was thriving. I was even walking a little using a walker, having had to use a wheelchair for the last three weeks of the pregnancy. However, I felt emotional and like shit; my section scar was sore, I was missing my own mother like crazy, and it felt like fluid was leaking from every bodily orifice. And this was the moment that the  head midwife, ward manager or whoever she was told me that they had ‘concerns’ about my ability to take care of my daughter. My heart broke. In that moment, it felt like Alison had died. I rang my husband and told him to take  Ali with him and leave me behind, because it was me, not him, that they had the problem with. Reading it now, it seems like the rants of a crazy person, but in that moment, it made sense. After numerous phone calls to social workers, public health nurses and Offaly CIL, we were allowed home, on the condition that a Public Health Nurse could come to our home every day and monitor our ‘progress’.

Nearly three years have passed , and now one of my best friends, who also has Cerebral Palsy, is excited about welcoming her new arrival in January. But after witnessing what  we contended with, she is starting to worry about how she will be perceived after the birth of her c child.. She will be a mother, not just an object of care, and it’s vital that she is enabled, without fear of judgement, to care for her child, It makes me furious to think that she, that we, have to think this way about the most precious event in any mother’s life, when children are being neglected by their parents every day.

and so I would urge her: If you by gross misfortune have to contend with these obstacles and attitudes, please have the courage to speak out.  This is only the second time I have done so, but I feel so much better. Only through our honesty can we truly help others and deconstruct the negative attitudes that have the power to destroy us.

A Scary Story

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It is three weeks to Halloween. You can tell this by the smell of turf lingering in the air at four o’clock in the evenings, by the sudden chill that envelopes you in the mornings, and by the faint sound of bangers being let off by the local ruffians.
Halloween seems to be the only time of year when it’s okay to be a freak; in fact, the gorier your costume and makeup, the better. You can even add fake blood, squelchy eyeballs and severed fingers to the mix for a truly horrifying effect.

What most people are trying to achieve is to look as unhuman and frightening as possible. I’ve been opening the door to excited trick-or-treaters for six years now, who stand there waiting for me to express my terror (and to hand over the goodies).

More often than not, it is they who end up full of terror.

What they see is a misshapen young lady, with sudden and uncontrolled movements, saliva flowing freely as she reaches her hand into the oversized tub of sweets, her speech slurred as she compliments their shop-bought costumes (I haven’t seen homemade ones for years). I can’t imagine what it’s like to be that young child on my doorstep, but it’s clear to me that my disfigured body and unusual movements are scarier than any costume they will ever see.

For somebody who doesn’t have one, having a disability can be a frightening prospect. I’m sure I’m not the only one that’s been told ‘I don’t know how you do it. If I had what you had, I’d die.’ My disability has often been referred to as a ‘handicap’, ‘illness’, ‘that’ disease (which is my favourite so far) and of course, like many others, I’ve been called retard, rehab, spastic (actually correct in a way, but not when there’s an ‘a’ in front of it), and other uncomplimentary things.

The truth is that people are afraid of disability, because being born without one does not grant you immunity from the possibility that you may acquire one by being in an accident, or even develop one, such as Parkinson’s or MS. Recently there has been speculation over whether being diagnosed with Parkinson’s led to Robin Williams’ suicide. We can never know for certain, but this sort of hearsay only reinforces preconceptions that disability is something to be dreaded, often a fate worse than death.

And in spite of the outrage that followed Hitler’s T4 Project during World War II (i.e. the mass murder of millions of people with disabilities across Europe, inspired by the concepts of racial cleansing and ‘survival of the fittest’), people are still afraid of disability. Some of the implications of this for people with disabilities are obvious, such as being stared at, and imitated by, strangers; being ridiculed for the way one walks and talks; being asked ‘is there somebody with you?’ as you mind your own business and wish that others would too.

However, lack of awareness and empathy surrounding disability issues have more devastating consequences than having to endure idiotic questions from Mr. Joe Soap. There was a conference held on the 25th September last in Kilmainham which addressed the financial and social costs of disability. Unfortunately I could not attend, but it seems like the biggest cost of disability is the loss of dign¬ity. A high proportion of people with disabilities live in poverty, unable to gain profitable employment. Many have lost their Household Benefit packages and their medical cards, and people with disabilities tend to face higher food and heating bills owing to their impairments.

Every so often, experienced disability activists stage well-publicised protests against cutbacks outside the Dail. These are the people who campaigned for equal rights and deinstitutionalisation for people with disabilities, nearly twenty-five years ago. How depressing that, nearly twenty-five years later, we are still campaigning for the same things.

And believe me, these things are fundamental to people with disabilities. All we want is equality. A lot of us need assistance to contribute to our economy, be this Personal Assistance or technological assistance. We need to be given access to goods and services through the provision of accessible transport and accessible business premises. Most significantly of all, we need to promote inclusion and integration in our communities by deconstructing the preconceptions surrounding disability and promoting the ability and strengths of each individual. If we don’t, things will never change and people with disabilities will be stuck in an endless time warp.

Which would be much more frightening than all the ghost stories on the planet.

Making my own identity

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There are many things in life that shape our identity. These can be ordinary things, such as where we grow up, the education we receive and the careers we choose, or extraordinary events beyond our control, such as having a disability or illness. All of these things may define who we are, but they should not determine what we are capable of.

I have a disability which in Ireland, seems to mean that I am perceived to be an object of care. Living with Cerebral Palsy has meant that over the years, I have had to allow many medical experts into my personal space, patiently enduring their prodding and poking, their testing my muscle tones in their relentless quest to determine my abilities and disabilities.

Never in a million years did these so-called ‘experts’ expect to be lost for words when I announced that I was pregnant in June 2011. Firstly, they were intrigued and made it clear that they intended to use my pregnancy and Caesarean section as some sort of case study. Secondly, they were baffled (there are seemingly few parents with disabilities in Ireland) at how somebody, who would be traditionally perceived to be an object of care, could in turn fulfil the physical and emotional demands of a small baby.

I am a stubborn and single-minded woman, and throughout my pregnancy I arranged meetings with Primary Care Support Workers, physio- and Occupational Therapists, and even the Public Health Nurse, whose initial expectations of our parenting abilities were depressingly low. However, by the time the big day arrived on the 9th February 2012, I was confident that at least these professionals were on our side.

After my daughter Alison was born, however, it did not feel as if we were all working together. Instead, it felt like the time my husband and I had spent appeasing the ‘professionals’ had been wasted. There was concerns that I would pose a safety risk to my daughter, without substantial grounds for this. On the day that my beautiful daughter and I were meant to be discharged from hospital, I was told that the hospital would need to be satisfied that there was enough practical support at home to help me with Alison, and insinuated that I would not be allowed home until they were satisfied. They recommended the use of a wheelchair and a cloth sling for transporting Alison around the house, and I had to buy this sling before they would discharge me from hospital. Incidentally, I have never used the sling, choosing instead to push Alison around the house in a sturdy buggy. I have never let her fall.

If someone were to ask me how I define myself, I would answer an aspiring journalist, a devoted wife and a dedicated mother. However, having Alison in m y life has transformed how I perceive myself as a person. Watching her grow into a beautiful, intelligent and opinionated young lady has made me realise that a person’s identity cannot truly be defined by her appearance or by her disabilities, but instead by a willingness to continuously challenge the stereotypes forced upon them by society and to live one’s life in spite of the perceptions of others.