Category Archives: Disability

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.