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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I am a WRITER!

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‘So, what do you do?’

This is a question I get asked all the time, and although it’s nearly been two  years, I’m still embarrassed by it

Yesterday I agreed to do an interview with an undergraduate studying for her final year in Psychology in DCU. She was a lovely girl, ambitious, and easy to talk to. She reminded me of myself in my younger days.

She wanted to examine the factors that influence or hinder people with disabilities in accessing employment. I knew it would be a little cringey; I’m ten years older than her, practically a relic, and I’ve voluntarily thrown myself back down the career ladder (not that I was far up to begin with, but anyway).

She asked me if I’m actively looking for work, and I said yes. (Three rejection letters this month alone, in fact). I know what kind of angle she was looking for: my employer’s premises wasn’t accessible, I needed extra technological accommodations, I would become fatigued if I had to work full-time (there’s an element of truth to all of these). But these were not my sole reasons for not looking for work.

Puzzled by the end of the interview, my companion asked me again, ‘So, is there anything else I need to know? Like what do you do in your spare time?’

I shrugged. ‘I’m pretty active in the Independent Living Movement,’ I said, then I lowered my voice, as if I was divulging a dirty secret. ‘I’m also trying to write a novel.’

My companion perked up. ‘You what?’ she stammered.

‘I’m working on a novel. I don’t know how it will turn out, but it’s taking up a good deal of time at the moment.’

My companion shook her head. ‘Fair play. That sounds like a lot of work.’

‘Well, it’s certainly not as easy as I thought it’d be when I started it!’ She  laughed, and I relaxed.

I think nowadays as mothers, a lot of us feel pressure to prove that we can do and be it all. I’ve been  at home with Alison for two years, and working on my writing in this time. This way I can have the best of both worlds. I can work as much or as little as I am able. I’m pretty happy, but still wary of how people perceive my choice to do this.

And to be honest, I don’t know why I care. For now, I’m doing something that is working out well for me and my family.

I don’t know if this will work out, if my novel will ever get published or if writing will ever be the career I’d imagined it to be.

But for now, I am a writer, and a mother, and delighted to be able to do both.