We must be ever vigilant to protect rights

John Williams, co-founder of FitzRoy, recently won the Outstanding Contribution Award at the National Learning Disabilities Awards for transforming the face of social care services for people with learning disabilities in England. He describes the obstacles he overcame in the 1960s and 70s to stop the institutionalisation of people with learning disabilities; with a rallying call for all who work with people with learning disabilities to remain steadfast against the threat of institutionalisation.

My personal fight began 60 years ago, in 1954, when my son Huw was born with severe learning disabilities. Back then attitudes to people with learning disabilities were wildly different. My wife found out the hard way. I couldn’t be with her the day she took Huw to see a professor of paediatrics, but to our horror she left his office with the words “Get him into a home as quickly as you can, and get on with your life,” ringing in her ears.
Locking away people with learning disabilities was the norm, and most people took this advice. As a result, there were very few people with severe learning disabilities living a fulfilling life or out and about in the community. That’s why people stared at Huw; they weren’t used to seeing people who were different.

Disabled people were sent to ‘subnormality units’ in psychiatric hospitals, referred to in those days as lunatic asylums. They were institutions, places people were hidden in, with no opportunities, no nurturing, and no sense of being part of a community; the very opposite of a loving home environment. We ignored the professor’s advice, and Huw stayed with us until he died aged 27. We got very little support, there was hardly any respite available, and it never seemed to be available when we wanted it.

People thought we were mad. Huw couldn’t walk, talk or sit up, yet the learned professor of paediatrics had said he’d be likely to get in trouble with the police! We met parents who followed the above advice and lived the rest of their lives with a sense of guilt at having abandoned a loved one. There were other parents who misguidedly felt a sense of shame at having a handicapped child; and there were others who even denied their child’s existence.

Elizabeth FitzRoy and I wanted people to have the opportunity for a home; nurturing, happy, stimulating places that were part of wider communities. Spurred by our personal experiences, and the stories of physical and sexual abuse that were emerging, we joined forces – leading to the birth of what is now FitzRoy.

It was a real struggle. The authorities (and so-called experts) were very dismissive. One director of social services described us as ‘amateur do-gooders that won’t be around in six months’.

Despite all the opposition, our first home for children was a huge success. We saw friendships blossoming; parents learning how to bond with their children; we watched as communities started to understand and enjoy being around people with learning disabilities. FitzRoy today supports over 600 adults across 60 locations, with person-centred care, in family-type homes in their communities.

We must not be complacent. The Mental Health Act of 1959 was an important shift in society; it swept away the Lunacy Acts of 1808 and 1845, which were still influencing attitudes and services. It repealed commonly-used legal expressions like ‘feeble-minded’, ‘cretin’, and ‘idiot’ to describe people with disabilities and it acted as a spur for local authorities to change their thinking. Despite all this progress, we still have a long way to go. Today there are still too many people with learning disabilities living in institutions, and we still have devastating abuse scandals emerging from these places.

Our attitudes, and language, may have changed, but the onus is still on government and local authorities to work harder to ensure that people with learning disabilities have their rights to live in communities protected. The abuse of the residents of Winterbourne View should be a wake-up call to anyone who thinks our work is done. The public were rightly shocked to find out that some of our most vulnerable citizens were being abused. Winterbourne isn’t a one-off; it followed on the heels of scandals in Merton, Sutton and Cornwall, all in the last decade. These are just the ones we know about, and life must be made as difficult as possible for the abusers.

It is incumbent on all who work in the learning disability sector to work with commissioners in local authorities, and regulators, to make sure we provide the right support to people with learning disabilities. We must protect their right to live independently and in their communities. We may shudder at the way things used to be but we must remain constantly vigilant; we must not close our eyes to the changes that are still needed.