‘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.

Why I’m writing again

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It would be incredibly pretentious of me, having started writing again only four months ago, to say that I would love to write full time. I’m certainly no JK Rowling or Marian Keyes or Cecelia Ahern. Yet, the more time I spend with my ridiculous thoughts, the more I find myself leaking them onto this page and, more specifically, this blog. And the more I feel that, Yes, this is what I want to do.

From a very early age, I have been acquainted with the written word. My mother, fearing that I would not be accepted into the local mainstream school, taught me to read at the age of three. I was reading before I was potty-trained at the ripe old age of five. When I was in Junior Infants, I had already read all of the class readers. I was bored, which the teacher was not expecting.

I have always been encouraged to write. At a basic level, I was given an electric typewriter at school, and it was through using it that I communicated my basic human needs, such as the need to go to the toilet. I had to type out all the answers to the teacher’s questions, as my speech was on a par with someone who was heavily inebriated. I remember, even at this age, thinking how degrading it was. As far as I was (and still am) concerned, I can talk, I do my best to be understood. It’s up to those to whom I’m talking to, to make an effort to listen.

Even now, however, this doesn’t always work in practice.

When we were making the RTE Documentary, ‘Somebody to Love’, I made it quite clear that my speech was the only part of my disability that I would change, because I feel that people tend to link my slurred, incoherent speech with my cognitive ability. For example, if I have to make a phone call to someone I don’t know, they tend to ask me to put my parents on the phone, or they hang up on me. ‘Call back when you’re sober’, ‘Is there anyone there with you’? ‘Listen, I’m hanging up because I don’t understand what you’re saying,’ are pretty standard responses when I call somebody who doesn’t know me. I dread phone calls, and firmly believe that every single person on the planet should have email or text. So. Much. Easier.

It’s been twenty-five years since I started primary school, and a lot has changed since then. I use a laptop instead of a typewriter, and I can make myself understood when needs be. I’m a wife and a mother; instead of being a dependent, I’m heavily depended upon. I’ve a degree in Trinity and relatively good experience of the working world. Yet, I’m still perceived by (some) people who don’t know me as a victim of unfortunate circumstances, who will never enjoy a decent quality of life; who is in some way inferior or lacking.  I endure the staring, the tutting, the ‘isn’t it terrible, the poor pet’, because to verbally object would be futile, like throwing petrol on a roaring fire.

And this is why I’ve started writing again. Admittedly, it would be a bonus if, one day, it became a way for me to put food on the table. For now, I’m just happy that the writer’s block is gone and I’m able to write once more, knowing that at least my words will be understood, even if I’ve nothing of importance to say.

Mama Mia!

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Since writing my last blog post, I feel somewhat lighter, happier, as if I have been freed from a horrible prison. And now I have the confidence to say that there are days when I, an amateur mummy, worry that I’m doing the wrong thing. Have I allowed Ali to eat too much chocolate today? Is that glue toxic? Where did she pick up  on that phrase?  and so on.

I was never under the illusion that motherhood was easy. In fact, I imagined it to be so much worse than it is. Until I had Ali, I didn’t ‘do’ kids. They were dirty, nosey, smelly creatures who pervaded every area of your life. However, no words could describe the love I felt when the nurse placed her in my arms. Suddenly, it felt as if I had changed. I was not Sarah any more, I was Alison’s mummy. And my own mummy was not there to tell me what to do or how to cope with this shift in identity.

It’s almost obligatory at Christmas to think of loved ones who have passed away. In my case, the feeling of loss is intensified by the fact that Mum’s birthday is this Monday 15th December. She would’ve been 57, only a ‘young wan’. It doesn’t help that her favourite Christmas song is ‘Fairytale of New York’ which so happens to be played everywhere about fifty times a day in the run up to Christmas. People look at me in shock when I don’t squeal in delight when it starts. Well, now you know why.

Becoming a mummy myself has been the greatest privilege of my life, but constantly wondering if I’m doing the right thing can sometimes be draining and isolating. Torturing myself by saying ‘I can’t even ask my mum’ doesn’t really help, all that does is send me into a self-pity fest. I find myself wondering how she did it with four; when sometimes I struggle with one, bearing in mind that I have Cerebral Palsy and wasn’t always the self-sufficient being I am now.

There was many a time when I truly resented my mum. Like all the times she made me attend physiotherapy and speech therapy after school when I really wanted to be at home writing poetry. Like the times she made me type out my homework on an old Sirius computer with an eerie green and black screen, when I wanted to write in my copybook like my classmates (to me it’s all the better if the teachers can’t read it). The final straw was when she sent me to the National Rehabilitation Hospital when I was sixteen, for intensive physio, speech and occupational therapy. I was livid because I was missing school, and the auditions for the class play (which I had written). Surely I, living with the disability day in, day out, know best what I need? Mum didn’t seem to see it this way.

Mum pushed me hard, often to the disgust of other parents. ‘Keep that foot straight’, ‘Speak slower’, ‘Look at what you’re doing’, she would bark at me. I would give her the doe-eyed look, the one that said, ‘You heartless bitch’. She seemed to find this hilarious. She revelled in this bitchiness. Often she and I would be about town and somebody would come up to her and say something like, ‘I feel sorry for the poor creatur.’ To which mum would respond, something along the  lines of, ‘You feel sorry for her? What about me, I have to put up with her all the time!’ or ‘My daughter doesn’t need your pity. She has more brains than the two of us put together!’

My mum was not just a mother. She was Una, a sister, a friend and a nurse to half of Tullamore at some stage. When I was pregnant, all of the nurses in the outpatients department had stories to tell about her, which usually ended in ‘well, I will never forget how your mother helped that man/woman that day.’ Mum used to tell me that nursing broke her heart. She listened to so many stories and carried them with her to the grave; to this day I couldn’t tell you any of them, but I know that some of them affected her deeply because she told me so.

Mum was elegant, witty and caring; she could also be forgetful and embarrassingly inappropriate. She spoke her mind at all times, which often had hilarious consequences. She wasn’t perfect by any means, but I couldn’t have asked for a better mother. She is the reason I am who I am today, and if I can do half a good a job with Ali as she did with me, then I would be a very happy camper.

So happy Christmas, I love ya baby, I can think of a better time, when all our dreams come true.

Happy birthday Mum. You may not be twenty-nine and a bit, but you will never have to use the purple rinse either. Thank God for small mercies.

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.

Is Ireland Ready to Address the Issue of Assisted Suicide?

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** This is a trigger warning. Please do not  read if you are triggered by the subject of Assisted Suicide **

 

Brittany Maynard from California was diagnosed with a Stage Four inoperable brain tumour in January 2014. Faced with the prospect of losing all cognitive function, Maynard moved from California to Oregon to avail of assisted suicide laws. Her death was announced on 2 November, mere hours after she announced that she had decided to postpone the original date 1 November. A fervent campaigner for the ‘Dying With Dignity’ movement in the US, Maynard’s death has once again forced us to examine the stance of assisted suicide in Ireland: is it ever acceptable to end your own life, or to ask a loved one to assist you in doing so?

The Oxford English Dictionary defines assisted suicide as ‘the suicide of a patient suffering from an incurable disease, effected by the taking of lethal drugs provided by a doctor for this purpose.’ Policymakers in the UK are on the verge of passing a law (the Assisted Dying Bill) that would allow those who assist a loved ones’ suicide to be granted immunity from prosecution. In Ireland, however, assisted suicide is still illegal under the Criminal Law Suicide Act. Although the act decriminalised suicide in 1993, abetting a suicide carries a punishment of approximately fourteen years in prison.

This controversial topic was explored in 2013 when the Supreme Court denied Marie Fleming, whose MS caused her constant pain and suffering, the right to end her life with the help of her partner Tom Curran. Fleming had argued that not being able to enlist help in taking her own life was in breach of her human rights, but according to the ruling, the Constitution acknowledges the right to life, but not the right to die. Also, had Tom Curran assisted his partner in committing suicide, he would not be immune from prosecution. Although Fleming died peacefully in her sleep on 21 December 2013, this was coincidental; it was still not the death of her choosing.

Fleming’s high-profile case forced Ireland to confront the prospect of assisted suicide, a subject which has gained much media attention in both the UK and Ireland in the last two years. On 17 October 2014, veteran presenter Gay Byrne, speaking about the proposed UK Assisted Dying Bill to Stephen Nolan on BBC Ulster, said: ‘My dread would be that I would lie a long time in awful pain and disability. I’d rather it happened very, very quickly’. Byrne is not the first Irish celebrity to openly share his views on the subject of assisted suicide; in 2013, Derek Mooney stated that he wants to take his own life if his health deteriorates in old age, and because he is afraid of loneliness.

The attention given by the Irish media to assisted suicide has been intensified by plans to legalise it in the UK. In May 2014, British chat show hosts Richard Madeley and Judy Finnegan revealed that they have made plans to assist each other’s suicide should the need arise. On 13 May 2014, Madeley told The Guardian ‘If Judy was ill and in illogical pain, I wouldn’t give a tuppenny if there was a risk of being prosecuted. I’d do what was right for my wife.’

This exact scenario was played out in Coronation Street last year, when the character of Hayley Cropper had a brain tumour, which failed to respond to chemo. She decided that she wanted to end her life on her own terms, much to the bewilderment of her husband Roy, who adored her. It was this love that enabled him to assist Hayley in her dying wish, even though Roy consequently suffered from anguish and despair long after her death. While Hayley was passionate about the right to die, Roy was insistent that his wife’s life should end naturally, which is representative of how emotive the subject of assisted suicide can be.

Furthermore, the history and circumstances surrounding assisted suicide means that the issue is complicated and will always be surrounded in controversy. Mooney’s reasons for contemplating assisted suicide are potentially damaging to the psyche of our society. Many of us have had to watch an elderly relative or friend suffer from dementia or Alzheimer’s and die a painful death. Often, it may seem like the kinder option to ‘put them out of their misery’.

However, it is difficult to forget that, less than a century ago, the Nazi regime ordered the involuntary euthanasia of thousands of children and later adults with disabilities across Europe during the Second World War. Those against the ‘right to die’ movement, which often include disability activists and supporters of rights for the elderly, worry that promoting the right to die will shift the focus from the provision of proper support services and palliative care, and start a descent down a ‘slippery slope’ that could be difficult to come back from. Dutch ethicist and former euthanasia supporter Theo Boer argues that ‘euthanasia is on the way to becoming a “default” way of dying for cancer patients’ and observes that doctors may come under pressure to grant access to lethal drugs on the basis of being ‘aged, lonely or bereaved’.

Assisted suicide has been legalised in five countries in the EU, including Switzerland, Belgium, Germany, Albania and Japan. Dignitas, an organisation based in Switzerland, performs voluntary euthanasia procedures, namely in the form of a lethal overdose, which induces a coma and, subsequently, death. Eight people have travelled from Ireland since 1998 to end their lives, one of which was in January 2014. Dignitas has been nicknamed a ‘suicide tourism destination’ by the media, and it is argued by many ‘right to die’ supporters that having to go abroad in order to avail of these services renders them inaccessible for those who are too far along in their illness to travel, or who simply cannot afford to do so.

It is interesting to note, however, that 70% of people who visit Dignitas clinics for an initial consultation never return to their clinics, which suggests that once faced with the reality of death, many people either change their minds or take their own lives. For many, it seems that the right to choose how and when they die may be more important than the ending of life itself.

Whether it is perceived as a religious, human rights or a medical issue, it is clear that the introduction of assisted suicide in Ireland is currently being explored, and it is an issue that will not magically disappear. Should this law ever be enacted, it is the responsibility of our lawmakers to ensure that safeguards are in place to prevent abuse. However, before we do this, we need to take it upon ourselves to ensure that our medical and community services are equipped to meet the needs of our elderly, disabled and ill citizens, so that assisted suicide can be offered in addition to, and not instead of, a comfortable quality of life.

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.

Toddler TV Addict

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Ugh. Today did not go quite as planned. What I had planned was to spend the day writing brilliant masterpieces while Alison was at playschool. Unfortunately I realised that this wasn’t going to happen as I sat looking at the blinking cursor, two hours later. If I didn’t know better, I would swear it was mocking me.

My evening proved slightly more productive as I played with Ali in the garden, then it was off to the playroom for a game of princesses and puppies. However, I must confess that there are some evenings where I just slump on the couch and turn on Disney Junior. Even though I sit and watch the programmes with Ali, I still feel that I’m letting her down by not being a ‘hands-on, 24/7’ mammy. Yesterday was one such evening, and after I’d put her to bed, I could still hear the theme tune of ‘Sheriff Callie’s Wild West’ (Ali’s current favourite cartoon) coming from the sitting room.

When Ali was small, I was determined to make sure that she would rarely watch TV, particularly cartoons. I read to her, I did puppet shows, we always had books and toys strewn across the living room floor. My husband was amused by my mistrust of cartoons. I’m not a big telly fan, and I detested the notion of Ali being glued to the screen all day, when she could be learning through play.

And then the inevitable happened – my body went on strike. I was waking up every morning in extreme pain, every inch of me aching from the effort of getting on and off the floor, spending hours crawling around playing with Ali. One particular morning, I was in so much pain that I just plonked Ali in front of Peppa for a whole hour. She loved it but I felt like the worst mother in the world.

At just over two-and-a-half, Ali has outgrown Peppa Pig and now her favourite cartoons are Sofia the First, Doc McStuffins and Sheriff Callie’s Wild West. Many parents note that their children’s behaviour is worsened by watching television, but I’ve noticed the opposite with Ali. For example, Sofia the First, who becomes a Princess when her mother marries King Roland, is constantly learning that being a true princess is all about how you treat other people. Sofia’s kindness and compassion towards others is often contrasted with her stepsister Amber’s selfishness and superficiality. In one particular episode, she risks missing ‘The Princess Test’ to help old librarian Mrs Higgins home with her books. As it transpires, Mrs Higgins is Fauna the Fairy in disguise, who tested all the princesses’ generosity. Sofia also learns that it’s important to be loyal to your friends and to consider the feelings of others.

When Ali’s not twirling around like a lunatic, pretending to be a princess, she’s a Doctor just like her other idol, Doc McStuffins (doctor for stuffed animals and toys). Doc has a magic stethoscope that enables her to talk to her toys, which in turn helps her to diagnose her toys with illness such as ‘stickiosis’ ‘mysterypox’ and ‘novrooma-tosis’. Doc teaches us invaluable lessons (often through song), such as the importance of staying hydrated, washing our hands, brushing our teeth and staying safe in the sun. And the most important lesson of all – everyone gets hurt sometimes!

Ali’s favourite at the moment is definitely ‘Sheriff Callie’s Wild West’. Through Sheriff Callie and her companions, toddlers learn how to be nice and friendly (Callie is the Sheriff of ‘Nice and Friendly Corners’), that telling the truth is better than lying, that it’s okay to ask for help and that there is no need to be jealous of others, because each and every one of us is special and talented… in our own way. Deputy Sheriff Peck and his best friend Toby often need guidance from Callie; for example, Toby learns that pretending to be sick is not the best way to get attention in ‘Toby’s Untrue Achoo’ and Peck learns that appearances can be deceiving when Dr Wolf comes to visit him in ‘Peck’s Bent Beak’. Ultimately, the message is to be fair to others and to treat them as you would like to be treated.

I fear that this article illustrates that both my daughter and I are shameless telly addicts, and that indeed may be the truth. Yet I have to say that I really enjoy cuddling up on the couch with Ali, laughing with her and commenting on each programme. And every night, before Ali goes to bed, I sing her this little song, as sung to a teddy bear called Pickles by Doc McStuffins:

‘It doesn’t matter what you say or do,
It doesn’t matter if your eyes are brown or blue,
I’m gonna love you, because you’re you.’

I’m off to watch a little adult TV now, at last.
How boring.

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.

Talkin’ bout a revolution (again)

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Election time has arrived again, and the atmosphere is almost electric. Posters on every pole, letterboxes crammed with manifestos, Facebook (and Twitter, I assume) home to pre-election scandal, the most recent being a van used for a candidate’s campaign parked illegally in an accessible parking space. This move caused outrage across social media sites this morning. Being a poet at heart, I saw this a metaphor for how far people with disabilities have yet to go in their quest for equality in Irish society.

Over the last five years, my profession has allowed me to explore and learn about the Independent Living Movement. I’ve studied the history of people with disabilities prior to the Movement and was physically sick after reading about the T4 Project which took place under Hitler’s reign during the Second World War. For those of you who are unfamiliar with this concept, I am talking about a scheme that Hitler himself devised where people with ‘incurable’ disabilities were institutionalised and later gassed or injected with a lethal substance (a ‘mercy death’).

The Independent Living Movement came almost twenty years later, coinciding with other human rights movements. I can imagine the excitement in the air as Ed Roberts, a young man and polio survivor, enlisted the assistance of an ‘attendant’ which enabled him to live away from home and attend university. He and a group of fellow ‘disabled students’ formed a group called the ‘Rolling Quads’ and they established the first Center for Independent Living in 1972. At this stage, the concept of somebody with a disability having control over the fundamental aspects of their everyday lives, such as deciding what time to get up in the morning, where to go, whether to work or pursue leisure activities was a foreign one.

And despite the Independent Living Movement arriving in Ireland in 1992, the physical and emotional freedom of people with disabilities is still in question.

We have to ask ourselves why, twenty-two years since the Personal Assistant Service was made available in Ireland, people in this country are forced to live in residential institutions and hospitals; why people who need the assistance to live independently live in fear of vital services being taking away; and how we got to a point where we say nothing in response to all the cutbacks in recent years in case we ‘rock the boat’, even though many people remain on a sinking ship, waiting to be rescued by a Government who caused us to sink in the first place.

It seems that Government is only interested in helping people with disabilities when times are good. Despite all the studies that have been conducted on the viability of the Personal Assistant Service, people are still living in institutions and hospitals, where they exercise little choice over their everyday routine. Having a disability is an expensive way of life, and yet medical cards are being revoked, housing grants are being refused and household allowances are almost non-existent. These cuts inhibit people with disabilities from participating fully in Irish society and ironically from contributing to society rather than sponging off the State.

So until we stand united and say ‘enough is enough – we want equality and guaranteed access to the services that will enable us to achieve it’, we as people with disabilities will always be vulnerable, passive recipients of services that are reliant on state funding. We need to ensure that in the future, we regain choice and control over our lives. The time for talking is now over; we need to speak louder with our actions.

Yet again.