I go through phases, extremes of mood and thoughts. Sometimes I’m elated. I love writing. I know I’ve made the right choices in life. Other times I worry that I’m making myself increasingly unemployable as the days go past.
I haven’t really left the Centre for Independent Living behind, of course. I still volunteer a lot of my time to promoting the philosophy of independent living and campaigning for equal rights for people with disabilities. In fact, I’m now part of an activist group called By Us With Us. we’re still relatively new, but we recently set up a blog which is well worth a look.
Independent Living is not my job any more, my husband insists. You’re a writer now. You should be dedicating every free minute you have to writing and trying to get published.
And oh, how I would love to! How I wish life could be this simple, that I could have the luxury of locking the office door every day, focusing on nothing but putting words down on paper. My mother used to tell me that I can’t fix all of the wrongs in the world. She was right, of course, but there are so, so many wrongs that I feel that I must try and do something;
As most of you know, I’m writing a novel at the moment, a story that initially came to me in 2007 while I was unemployed for six months. The story explores the life of a disabled woman who was tortured by a nun in a residential institution and how she copes with the aftermath of that abuse. Lately, I’ve been finding it hard to stay motivated. This is off the wall, I thought to myself as I rewrote the first chapter the other night (for the sixth time). No-one reading this is going to believe that someone could be treated with such cruelty.
I’m not a trusting person anyway, and I’m sure I’m not alone in this distrust, particularly in the government at the moment (or, as it is starting to transpire, any government before or after this). Yesterday, the story of the abuse suffered by ‘Grace’ dominated headlines, a girl with an intellectual disability (now forty years old) who was abused while in foster care. It’s still a little unclear the extent or the nature of the abuse; some of it is of a sexual nature.
Grace has an intellectual disability and in the eyes of the Irish state at least, cannot be trusted to have her own narrative voice. And in Ireland, this is not limited to those with intellectual disabilities. The opinions and lived experiences of disabled people in Ireland don’t seem to matter to our policy makers.
I doubt that Grace is an isolated case. So why is there such little uproar about the status quo? There is mounting evidence to illustrate that disabled people should not be living in institutions, that the state cannot be trusted to provide a decent standard of care. Who can?
In December 2014, the nation was shocked by the Aras Attracta scandal, which saw people with intellectual disabilities being physically and psychologically tortured by those who were meant to care for them. People were disgusted by the RTE documentary; at one point my husband, whose stomach was turning, asked me to turn it off. I refused.
‘How can you sit there and watch that?’ he asked, bewildered by my seeming nonchalance.
‘Because,’ I replied, ‘Ireland has buried its head in the sand for too long. We have a government, and this and successive governments not only allow this abuse to happen, but by implementing cutbacks create situations such as these. We need to see this and someone needs to take responsibility.’
The Aras Attracta staff were later held accountable and given paltry sentences of community service. But what happens to those who continue to abuse people with disabilities behind closed doors, and are never questioned? I’m not talking solely about people in congregated living settings – I’m talking about people who suffer abuse at the hands of their families too.
When I started doing some research for my novel, what struck me was the lack of information available about how disabled people were treated in Ireland over the last fifty years. Apart from a few research papers, the Irish Wheelchair Association’s collection of stories, Extraordinary Lives, and this documentary on the programme ‘Horizon’ called ‘The Weakest Link’ on RTE in 1966, there isn’t a lot of documented stories about what life was like for a disabled person, particularly in a residential setting. So essentially I’m writing a story about something I have little information.
But if I can achieve this, then I will be happy. Because it’s time for disabled people to tell their stories, and to discover and reclaim their histories.
If we don’t, then our stories will be like Grace’s – spoken through the mouths of people on the outside. Our stories should – and deserve to be – woven into the mainstream fabric of Irish society.