Wednesday 1 May 2013

Blogging Against Disablism "Never forget where you came from"

I grew up in a world where disability was hidden. There were no accessible buildings, buses, or tube stations. Disabled people didn't feature in television programmes. They weren't comedians or actors.  Insults like "mong" and "spaz" were acceptable. I never knew any disabled people till I was into my teens and I did a bit of voluntary work with children. But outside the special clubs or holiday programmes, I never saw the kids I helped in day to day life. It was as if they were invisible or lived in a parallel universe.

When I was 18, I went to live in a L'Arche community and my life changed completely. In 1984, L'Arche, though 20 years old, was still a revolutionary concept. The majority of people with learning disabilities still lived in decaying, Victorian hospitals isolated from their families and the places they had been born into.  L'Arche started in France and soon spread round the world, to provide places for people to live in their own communities, supported by live-in assistants. It was in L'Arche that I first appreciated, disability is an impairment, with the right support, any disabled person can find their place in the world. And it was in L'Arche that I discovered the brutal horror that many people with learning disabilities experienced in long stay hospital.

Two of my friends John and Doris, had previously lived in a hospital in Caterham called St Lawrence's for over 30 years. Both had been sent there aged around 10, by professionals who advised their families it was for the best. Both John and Doris told me many many times, that such a life was not the best for them. John's disabilities were mainly associated with being able to understand his emotions and manage social interactions, yet he was highly intelligent. In the hospital, no-one believed in him, like all the patients he was considered "stupid". He hated the place. He really loved our home, being able to have his own room, to walk to the sheltered workshop, buy his own clothes, sit on the wall and chat to the neighbours.  But though he was able to escape the walls of St Lawrence's he never quite escaped the damage of institutionalisation. He was a gifted, sensitive man, yet he struggled to accept that he was capable of any achievement. He often created beautiful art, or rugs in the sheltered workshop,  but if you praised him his emotions would sometimes spill over, and he would lash out in anger at himself or others. Though he stayed in the community for over a decade, in the end he became unable to tolerate living in an environment that offered so much freedom. He found it harder to control his behaviour and the community found themselves unable to support him. John ended his days in a residential care home, whose more regimented environment provided the familiarity of the institution, though thankfully not the cruelty of St Lawrence's.

Doris, too was immensely damaged by St Lawrence's. I hated that place, she would always say, telling me stories of staff that never used her name, of never being allowed to keep any possessions, have her own money, and the greatest trauma of all, losing contact with her parents, and not being told when they had died.  She too, experienced bouts of anger (I was often on the receiving end), but unlike John, as she grew older, she was able to reconcile with her past. She proudly gathered a room full of possessions around her, made friends with the neighbours on the street, came to terms with the death of her parents, became a vital member of her local church and the grand dame of the community.  She was an avid lover of the Royal Family, and when she died, her coffin was piped down the High St to the same music as the Queen Mother. In death, she became the matriarch she should have been if she'd lived in another time.

L'Arche changed John and Doris, and it changed me too. After I left, I went to University, intending to be a Biologist, but after three years, I knew that wasn't the life for me. I began to apply for jobs in social care, and within months of leaving was back supporting people with learning disabilities. I've not looked back since.

I'm telling these stories today because today is Blogging Against Disablism Day.  A lot has changed in the last thirty years, and the majority of it has been good. Today people with disabilities are visible, buses and buildings are accessible. There are disabled actors, and comedians, disabled people appear in TV programmes. The world is a richer place because of it.

I'm  proud to have been part of the revolution that tore down the hideous institutions of the past and freed people with learning disabilities. I've been proud to stand beside disabled friends at rallies, to support campaigns for better access, opportunities for employment, independence. I've been proud to work with self-advocacy and campaigning organisations, and to help make self-directed support a reality. For most of the last thirty years, the journey has been hopeful, exciting, a chance to break down barriers. The last thirty years have been about progress, improvement, greater opportunity.

And yet, this year, I fear for my friends with disabilities like I never have done before. I fear about the impact of cuts and welfare reform that will curtail people's freedoms and independence. I fear about the effect of a relentlessly negative media which is resulting in an increase in hate crime. I fear about the minority of bigoted politicians who don't mind anyone knowing they think disabled people are  worthless. 

This year, it feels like this country is on the brink of turning back the clock thirty years: trapping disabled people into lives of poverty and grinding dependence at the top of a slippery slope which ends in  institutionalisation at best, and at worst a world that accepts eugenics is a reasonable social policy. It feels like we are on the brink of a nightmare, and it frightens the hell out of me. And yet, I don't believe the majority of people in Britain are like that. I believe we are better than that, as individuals, and as a nation. Today, we mustn't forget where we've come from, and the future we are still trying to achieve. Because, no matter how much progress we've made, there's still plenty more to be done. We mustn't let austerity stop us.

Which is why I'd like to urge everyone who reads my blog to stand up on the side of disabled people and get involved in some of the campaigns I support:

Please sign the Wow Petition and use twitter to spread the word.

Follow these brilliant bloggers to educate yourself about what is happening. Sue Marsh, Kaliya Franklin, Steve Sumpter,Centre for Welfare Reform

Contact your MPs and councillors to let them know you won't stand for it.

Write to your local press pointing out what is happening.

Stand up to every snide comment, wrong assertion and outright lie you hear about disabled people.

And never, ever, forget where we came from. We can't go back there. We just can't


The Goldfish said...

This is fantastic, thank you.

Anonymous said...

What society did all those years was intolerable. Unfortunately, you're right - it's happening all over again for us.

Thank you for being a part of the solution, for caring and for sharing this wonderful article.

John Wiswell said...

It's miserable on this side of the pond, as well. Here we barely provide any services to cut, and a disability can very quickly spell financial ruin. We ought to be better to each other. I certainly try to be.

Sue Davies said...

I work for a Disability charity and it was only when I saw first hand, the trials that people with disabilities face, that I so wanted to be involved. We cannot and will not go back to how it used to be. go to and see what we do and why. We also hold the biggest Disability Awareness Day in Europe all of which is non profit making. We fund raise tirelessly to keep going.

Sue Davies Warrington

Anonymous said...

Hi Virginia - I don't know why we haven't linked up before - My passion is your passion and I work with people with autism and other disabilities as my job and at church where we have stories just like John and Doris's. I have connections with L'Arche in Liverpool and Preston and love what they do. You can thank Anne booth for showing me your blog :-) Lynn ( twitter @reachoutASC)