I hate to be a burden, but…

Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

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Grieving and healing

‘They say time’s supposed to heal you, but I ain’t done much healing,’ are the lyrics that most struck me when I heard Adele’s new song ‘Hello’, for the first time. They certainly aptly describe how I feel about the fact that I, like so many other people across the country, didn’t manage to get tickets for her upcoming concerts in the O2 and in Belfast in spite of trying to phone Ticketmaster from 8.30am onwards on Friday 4th December (God loves a trier, right?) and reports later revealed that tickets had sold out within five minutes of going online. I won’t lie. I was gutted, but later made light of it when I offered my kidney in return for Adele tickets on Facebook (that offer’s still there, by the way. Message me here, on Facebook, on Twitter… whatever suits).

I’m just about over it now. If only real grief was so easy to deal with.

Today will be the seventh year I’ve marked mum’s birthday without her. Seven years. I’ve counted it up a few times because I still can’t believe she’s been dead for so long. She’s been dead for six and a half years. I haven’t had a proper conversation with her, touched her face or heard her voice in nearly seven years. Breaking it down like that fills me with panic, because when she first passed away I thought that I would be unable to function without her. I didn’t think I could. At the start, there were days when I would go to work in jeans and hoodies. There were other days when I couldn’t face going to work, or eating, or doing anything remotely productive. Then there were the constant thoughts. My last words to her were not ‘I love you’ or ‘Thank you’… (It annoys me that I can’t remember what they were, but I know they were nothing remarkable). If only I’d known how sick she was, I would’ve, could’ve, should’ve… What were her last thoughts, was she scared/happy/sad…? I was consumed by these pointless thoughts for nearly two years, and they nearly destroyed me. For my own wellbeing, I’ve learned to let them go.

In an attempt to ‘get my act together’, I reluctantly agreed after three months to go to the Parish Centre in Tullamore for counselling. Bless them, they were nice, but the lady I spoke to spent most of the time asking me about my disability. ‘Right, so, you feel guilty because you didn’t get to say goodbye to you mammy… here, tell me something, do you dress yourself in the morning? Aren’t you great?’ At the end of the session I lied and said that she had cured me of my grief and I didn’t need any more counselling sessions. In fairness, the bizarre experience did cheer me up for a while (purely because it was like it had happened in a parallel universe), but then I found myself facing my own feelings again, and I didn’t like that. So instead of dealing with them, or at least acknowledging that I had them, I decided it was my job to look after everyone else. (I genuinely love looking after others, don’t get me wrong). Is Laura okay? Is dad okay? Is Stephen okay? Is Alex okay? Is John Paul okay? Are the goldfish okay? I took on as much as I could in order to avoid coming face-to-face with the gut-wrenching pain that was losing my mother. This wasn’t their fault, and I was more than happy to do it, but my obsession with their well-being became a tad unhealthy to the point where I couldn’t decipher what I felt myself.

Even when it came to selling our family home, two years later, I remained steeled against falling into sentimentality. We had to sort through all of our mum’s stuff, which was the hardest thing I’ve ever done (you know, apart from losing those Adele tickets). I tried to be practical and sort everything into ‘valuable’ i.e. jewellery, handwritten books, her drawings and paintings, photos and ‘crap’ i.e. keyrings, pencilcases, receipts, empty notebooks. Us three girls did this together and Laura and Alex started reminiscing. ‘Aw, remember when mum wore this? And the day she bought that?’ I walked out on one particular occasion. I didn’t want to remember. As far as I was concerned, mum had been dead two years and grieving time was over. I had to move on with my life. I wasn’t going to get sucked into the past again. It was too painful. If I had to talk about mum in the past tense, it would mean that she was truly gone, and I wasn’t ready to acknowledge what that meant yet.

Fast-forward three years, to 2014. Much had changed. I had my own daughter. We lived in our own house. Everything was good, brilliant even, when suddenly I started to feel a grief so intense it felt like it was choking me. I’m not sure whether it was the passing of a family member in April 2014 that triggered my grief, but I felt the loss of my mother as strongly as the day she was buried. Every part of my body craved her, to see her, to hear her, to have her meet Alison. I felt lonely for her. I wanted to chat to her. This was nothing new, usually these feelings would pass as the days wore on. They didn’t this time; in fact they intensified. ‘To hell with this,’ I thought, annoyed, ‘I have a child to mind. Cop yourself on.’ But I couldn’t. Ignoring my grief wasn’t going to work, not this time. It got to a point where I could barely face getting out of bed. I forced myself to take time off work to recover and embrace these feelings. It was difficult but I learned so much about myself during this time. I learned that I tend to take on too much, that I become overwhelmed too easily, and that keeping things bottled up comes back to haunt you eventually. But equally I realised that I was stronger than I thought, that I had somehow managed to keep things together and that I would eventually regain the ability to do these things again once I took the time to take care of myself emotionally.

When I first read about the five stages of grief, I thought that the grieving process would be over once I’d entered and ‘completed’ each stage (the stages are denial, anger, bargaining, depression and acceptance). I imagined the ‘acceptance’ stage as some sort of finishing line where I would be able to think of my mother without bawling like an idiot. I thought that it would be like the ending of a Disney film – soppy and sentimental, but over. Some days I think I’ve conquered this grief, but in the last twenty-four hours I’ve heard ‘The Fairytale of New York’ twice and I’ve cried in public, twice. (Once was at an office party so hopefully my colleagues just thought I was pissed.) My mother once told me that ‘Fairytale’ was her favourite Christmas song, so every time I hear it my soul wells up with sadness that I try to suppress. Sometimes I can do it, other times I fail miserably.

I’m not an expert but from what I’ve experienced over the last six years, and from listening to others’ experiences of grief, it is a process that never ends. Although I’ve had to learn how to function without my mum, it doesn’t mean that I don’t miss her, and I still shed a tear or two at the most inappropriate times. And though it’s not convenient, it feels somehow liberating to acknowledge and embrace these feelings when they arise instead of trying to push them down all the time.

I guess what I’m trying to say is: mum, I love you. Some days I think of you more than others, and there isn’t a day that goes by that I don’t miss you. I won’t be able to contain my grief all the time, but hey, I’m only human. All I can do is try my best to make you proud every day. Happy birthday. Big hugs. I’ll have a Knickerbocker Glory in your honour (I’ll do what I have to do).

 

PS Seriously lads – those Adele tickets – all prices considered. All unnecessary organs up for grabs.

Making my own identity

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.