Cork Feminista has chosen the theme of ‘Sharing Stories’ for its celebration of International Women’s Day, 2012. I’d love to join everyone for an evening of story-sharing at the Metropole Hotel but I can’t, and why I can’t is part of my story...the story of disability as the Cinderella of feminism.
When the first Slutwalks started to happen the organisers were contacted by members of Black women’s groups who felt that the marches were a sign of white female privilege. They described their own experiences of walking on their own streets and their feelings of exclusion from this particular manifestation of feminist activism. They said that they felt that white western feminism should ‘reach out’ to them and their experiences. When I watched the Slutwalks and listened to their critics I wondered whether either side had any idea of how big a luxury it is for some women just to get past their front doors at all.
Issues of sexuality and race are dynamic and edgy, they’re the daily fodder of feminist blogs and forums. Disability and particularly the situation of those that care for the disabled are almost invisible. It’s not sexy, it’s not edgy and disability caring leaves precious little time for online presence. So the 80% of unpaid disability carers in Ireland who are women frequently remain isolated and unheard and the 20% who are men suffer the same fate for engaging in what State and society alike still consider to be low-status women’s work.
I am not disabled myself and so I am not qualified to write on behalf of women who are but my son is. The story of how that has affected my life is not just my story, it’s the story of the many other women like me and it’s a story that I want to be heard because I don’t think that disability and its implications should continue to be the Cinderella of feminism.
If a child is born disabled the change to your life starts straight away but my son is autistic and like so many others he was a perfect baby, developing normally until the age of fifteen months when his regression began. When a child starts to disintegrate before your eyes the very last thing you expect is that both your marriage and career will also have an alarmingly high likelihood of falling apart, as both of mine did. And you don’t expect to have to battle continuously with State systems that are both demeaning and begrudging and often insulting.
In the UK 34% of all single parents are primarily women with disabled children and most are in that position because their partner has been unable to cope and has left. The most recently available statistic for Ireland dates back to the 2006 Census and gives a figure of 8%, with no more recent estimates being currently available.
In my past life I was a university researcher/lecturer but the extreme demands and uncertainties of my son’s condition meant that there was no hope of that continuing. I’ve seen the same thing happen to many other working women as they’ve struggled against a tide of hopelessly inadequate supports and services that increasingly confine them to their homes and the desperately necessary care of their disabled children. As their capacity to generate earned income declines their reliance on benefits becomes inevitable and the callousness with which the present government has hit at the disabled and their carers has currently made a vulnerable situation much, much worse. And this is in spite of the fact that the cost of raising a disabled child is three times greater than a non-disabled one.
The impact on the lives of women raising disabled children alone is both personally and financially devastating as socialising becomes impossible and the waste of their employment expertise is huge. My son, at eighteen, is entirely home-based, requiring care 24/7/365. I was originally allocated only four hours per week of support cover for him. He can never be left alone but being severely autistic and intellectually disabled it is not always possible to do simple things like supermarket shopping with him in tow so some of that time has to cover basic things like this. It took two separate attempts at kicking up a stink to get our support hours raised to eight per week. There are one hundred and sixty-eight hours in a week and with just eight of them covered getting out of my front door is a big achievement. The truth is that mostly, for the other one hundred and sixty, I don’t.
So please, if you’re celebrating International Women’s Day with Cork Feminista then spare a thought for those who can’t be there and please do what you can to put disability on to the feminist agenda for 2012.