The need for a collective

Sometimes, when I become disillusioned with the world, I have to remind myself that had I been born twenty years earlier than I was, there is a good chance that I would’ve spent my childhood at least in a box room in my family home, or in a residential institution.

Luckily, this wasn’t the case. I was an eighties’ baby, and while I was still in nappies, Martin Naughton and others were working to bring the Personal Assistant Service to Ireland. Oh, it must have been such an exciting time! Every time I come to the CIL Carmichael office for a meeting I am always distracted by the photos on the wall, an archive of Independent Living history. Martin Naughton’s hair not yet turned grey, Eugene Callan looking more or less as youthful as the last day I saw him, two months before he died. These, in my mind, are great people who achieved extraordinary things. And they didn’t need college degrees to do it. All they needed was self-belief, passion and friendship. Above all, they were friends – Martin, Eugene, Donal Toolan and John Doyle were (or so it appears at least) completely comfortable in each other’s company. Many of us also enjoyed friendships with them, and sorely feel the void they have left in our lives.
Both Martin and Donal took part in making a book to celebrate the fiftieth anniversary of the Irish Wheelchair Association called Extraordinary Lives, and I was struck by something that Donal said about Ireland adopting a rights approach to service provision and while this is a positive thing that there may be negative repercussions in the future. It made me think about our collective identity as people with disabilities and what the status quo is at the moment.

The meaning of Independent Living was threatened during the recession, and the shockwaves of this change continue to grow. Service providers stopped asking ‘What do you want?’ and instead started asking ‘What do you need?’ People became trapped in their own homes, some of whom only saw another person when they were assisted out of bed in the morning and put to bed at night. Gone was the freedom of choice. Instead it was replaced with time slots, assessments of needs based on the medical model of disability.

I am obsessed with what could be labelled as ‘dystopian’ or ‘speculative’ fiction, and my two favourite novels are The Handmaid’s Tale by Margaret Atwood and 1984 by George Orwell. In both novels, the oppressor limits the use of language (in The Handmaid’s Tale the handmaids are only allowed to answer with a limited range of responses; Winston’s job in 1984 is to destroy records of the past and fabricate history to portray Oceania as being a progressive regime), and it makes me wary.

For example, when the first CIL opened in 1972, the term ‘Leader’ came about. Leaders such as Ed Roberts stipulated that he wanted to avail of a user-led service which they were in control of. These Leaders did not want to be told what to do – instead they wanted to be empowered, enabled. They very much wanted to be in the driving seat of their own lives, and they worked together. The bus protests were a result of working together. Ed Roberts and Judy Heumann established the World Institute on Disability together.
And in Ireland, when devastating cutbacks to the PA service were announced in 2012, Leaders from across the country put on their warpaint and said no, this service was too precious. And the Government actually backed down! On one hand, it shouldn’t have taken three nights of sleeping outside the Dail for this to happen, but it was a true testament to what we as Leaders can achieve when we stick together and fight for our rights. Yet, the PA service now seems to be in danger of being confused with a home-help service, something that usually involves a roster from a service provider, who is deemed to be the experts in what their ‘clients’ need.

Members of dystopian societies are trained to distrust one another. Even the proles in 1984 spy on each other, as do the Handmaids in The Handmaid’s Tale. This is a ploy to stop people coming together in retaliation because as we all know, one voice in the darkness might never be heard but several voices shouting together are much harder to ignore.
Of course, people are afraid. We have fought for so much in the last three decades that the prospect of losing more of our entitlements is frightening. We have come to view vital supports including the Personal Assistant Service as a luxury, forgetting that for many this service is the difference between living and existing. But staying silent is no longer an option. In being afraid to speak about the philosophy of independent living and the importance of control and choice, Independent Living as our forefathers fought for, will merely become a distant memory.

In dystopian societies, rights are slowly stripped away before those affected can do anything about it, and soon the new regime becomes the norm. prescription charges have been reduced for medical card holders to €2 per script, but these charges didn’t exist prior to 2008. Public transport remains largely inaccessible, yet the government has not replaced the Motorised Transport Grant or Mobility Allowance.
The only way we as people with disabilities are ever going to achieved true equality as outlined in the UNCRPD is if we stand firm together and start fighting back as a collective. I’m not saying that all disabled people should be bosom buddies – in life we will find it easier to befriend some people than others – but we need to stand strong. We must start refusing to subscribe to the ‘ableist’ view of society – in other words stop focusing on what’s ‘wrong’ with us and instead start challenging the status quo and the concept of normality.
Because as long as we keep thinking of ourselves as the ‘other’, we always will be.

And we will continue to fight lone battles in a world that delights in creating division between us.

Sarah Fitzgerald is secretary of CIL, a freelance writer and blogs at www.wobblyyummymummy.com

This blog and other blogs are views expressed by the writers and do not necessarily represent the views of the board of CIL.