The campaign to change the law for disabled people brought together a broad coalition of activists and impairments for the first time. Liz Sayce OBE of Disability Rights UK and Frances Hasler of Healthwatch Camden talk about how the movement drew strength from its diversity.
This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.
Frances is Director of Healthwatch Camden. Frances helped to set up the National Centre for Independent Living, and was a campaigner for direct payments and civil rights legislation.
One part of the campaign that I’m quite proud of is our ability to bring new people into the action, as well as the people who would always be involved.
Disability rights activists had a very different approach to the charities, and one of the reasons was their involvement in the other equality campaigns of the time. We had people in the civil rights campaign whose activism included the anti-Apartheid and LGBT movements. We knew that the disabled civil rights activists in America had learnt directly from the black civil rights and feminist movements, and we were also learning from the other equality and social justice issues.
It’s about equality for all
For me, it wasn’t about special pleading for disabled people. It’s about equality for all, so that if it’s about equality for me, it’s equality for you, too.
The movement didn’t get it all right – not everyone always felt included – but this sense about the connectedness of equality struggles was there. In practical terms, this meant having the largest possible coalition of people with a range of impairments.
One of the things that this openness and inclusiveness did was to bring a great energy into the campaign, in the form of the UK Coalition of the People Living With HIV. Charismatic people were involved in that campaign, in particular John Campbell. They brought irreverence and their own unique tactics. At a time when people with HIV were dying very quickly, and when use of retroviral drugs was in its infancy, these activists had an absolute urgency when campaigning.
Liz Sayce OBE
“Our critics are like wolves circling a flock of sheep, looking for the weakest to pick off – that is, people with psychiatric disabilities”.
So said the Equal Employment Opportunity Commissioner in the USA, where popular and ‘unpopular’ (mental health and HIV) disability organisations had joined together, to succeed or fall together, in their fight to get and keep civil rights law. Thanks to the late survivor activist Judi Chamberlin, unity held and the American law covered mental health discrimination.
I worked with Ian Bynoe, Mind’s legal director, who co-wrote the first policy blue-print for disability discrimination law in 1990. In 1978 mental health activists had called for anti-discrimination law, but were turned down on grounds of insufficient evidence of discrimination to justify legislation.
In the 90s I oversaw lobbying on the Disability Discrimination Bill which ensured that mental health and even personality disorder were covered, against everyone’s expectations. Peter Campbell, the great leader of Survivors Speak Out, led survivors in pressing for our rights, working with legal experts. They were exciting times.
I spent much of the next decade putting discrimination on mental health grounds at the heart of disability rights thinking; and disability rights at the heart of mental health debates. Formed in 2000, the Disability Rights Commission (DRC) decided to list important adjustments to the social world ahead of more obvious physical access adjustments, all to create a sea change in public awareness of the massive exclusion of people living with mental health challenges.
At the DRC, we undertook formal investigations and found no less than a quarter of DDA employment cases concerned mental health discrimination. Commissioner Richard Exell talked of his pride in working with other mental health users and survivors around the country to promote our rights. The DRC Commissioners historically opposed distinct mental health law as inherently discriminatory – because it permits compulsory treatment of people quite capable of deciding for themselves. We thought we were making headway.
We must be inclusive
Breaking down physical barriers is crucial – and patently unfinished. But, if we are serious in using figures like ’12 million disabled people’ we must not imply access is only or mainly physical. We must be inclusive. History in the US and UK shows us that unity is strength.
The mental health movement is not a small adjunct of the ‘main’ show: it has fought discrimination for centuries. I spoke to Peter Campbell, now retired, and he said “We are still fighting on”. We must. And we have to recognise the diverse history of our distinct but increasingly linked movements.