Two weeks ago Sian Vasey died peacefully in a hospice surrounded by close friends and family. I knew Sian was seriously ill some weeks before as she was admitted into hospital during the planning of a meeting we were organising with Liz Kendal.
I had invited Sian to join Reclaim Social Care because she had run a Centre for Independent Living in Ealing and had a wealth of experience as a campaigner for Disabled people’s rights. It is impossible to recall how long I have known her, but I know it probably goes back to the mid-1980s, and our paths had crossed ever since. Sian engagement with disability politics goes back to the early days of the Disabled People’s Movement and the foundation of the Union of the Physically Impaired Against Segregation however, like me, she crossed over into various branches of our struggle. Sian is perhaps best known for her leading role in the development of Disability Arts. In 1989 she wrote an important paper called, Disability Culture: It’s a way of life and two years later, Disability Arts: A National Perspective. I want to use a quotation here:
“I do not believe there is any doubt that Disabled people have our own culture in that our lifestyles, in the main, are distinctly different from those of non-Disabled people. Whether Disabled people en masse want to term this difference a culture remains to be seen. Certainly a lot of Disabled people shy away from acknowledging that they have anything to do with disability as a movement and there are indeed strong pressures on us to be ‘normal’ and to fight on an individual level against the injustices we face, which work against our collective strength.”
This conviction existed within Sian’s politics, lifestyle and professional career. She worked for the London Disability Arts Forum and within the BBC she was the producer in 2000 of The Disabled Century. Poor Sian was caught in the cross-fire when Margaret Hodge, the then Minister for Disabled People’s Rights, insisted on editing changes which removed comments I had made as chair of the British Council of Disabled People. Despite this incident, we remained friends and worked together again in the campaign group, Not Dead Yet which opposes legalising ‘assisted suicide’. Her conviction also led to her organising a local RSC group. In an article called, Taking Care, which appeared in The Guardian 2011 Sian’s understanding of our struggle for independent living was beautifully captured. I employ about nine people regularly, and have done for 24 years.
“I have spinal muscular atrophy [an hereditary condition in which cells of the spinal cord die and the muscles in the arms and legs become progressively weaker]. When I was a child my mother did everything for me, of course, and I remember asking her how I would manage when I was older. She just said: “You will have to get other people to help you.” So it’s something I am accustomed to.
There are huge benefits from employing your own support workers; you have independence, you have control. You can go out where you want. I need help getting up and getting dressed so my support workers come in for two-hour shifts.
My support worker drives me to work [as an independent living director for Ealing council in London], helps me get on and off the loo, and gets me food. I have increasing problems with typing so I also need someone to do that.
Then in the evening I need help getting washed, undressed and put into bed. It can be intrusive – but I am at an advantage in not having to have people with me all the time. It’s intense being with one other person – you need some breathing space.
You do have to be a manager in your own home – which can be tiring. I would say it is the same level of bother as having two children. There are certain qualities you need in support workers – the main one is understanding routine. For instance, in the bathroom you want things done in a specific order. My hair is a bone of contention – it’s a big, wiry mess, so it is trying to get it pulled back so it looks all right.
Anna is very good. She’s very bright, very clever. She immediately understood she was supposed to learn the routine and do it. She’s helping me learn my lines for a play I’m in and advises me on technique. You can get along with a lot of people, but it helps if people are efficient, fast and remember what to do.
I am a product of an era when you could get a care package without too much difficulty. Already now, before the cuts have come into effect, the system is very ungenerous. I don’t know what people are going to do when they come in. The people I see at work supporting disabled people are often not getting an adequate package and their lives are curtailed. The cuts are going to be desperate. It could be catastrophic. We will get a re-emergence of the disability movement, which hasn’t disappeared, but is not as edgy as it once was. But the needs will be there – exposed and raw, and people will be having the kind of time you had in the 60s – but back then we didn’t know things could be different.”
Sian is gone, but she’ll not be forgotten.
Bob Williams-Findlay, 18/10/20