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.