Changes for people with Learning Disabilities due to FitzRoy founder

For many years it was a norm for people with learning disabilities to be locked away in large institutions for the duration of their lives.

The institutions were generally known as ‘mental hospitals’ where patients were often abused both physically and sexually and had no contact with the outside world. 

However largely thanks to John Williams and Elizabeth Fitzroy these people are now very much part of the community as they set up a charity over fifty years ago to challenge the social exclusion of these people.

In recognition of his achievement, Mr Williams won the Outstanding Contribution Award at the National Learning Disabilities Awards earlier this year.

John Williams, co-founder of FitzRoy

He knew he had been shortlisted but admits he was “shocked and speechless” when he heard he had won. “I was up against a professor, three doctors and a baroness. It meant such a lot to me.”

“If Huw, my profoundly disabled son, had not had such a wonderful mother who also supported and encouraged my FitzRoy activities, such an accolade would not have come my way.”

Anna Galliford, chief executive of FitzRoy said: “John hasn’t just changed the lives of the people we support; he created a whole new way of seeing and supporting people with learning disabilities – from hiding them away in institutions or their homes, to giving them back their independence.”

Mr Williams found out the hard way, the medical profession’s attitude to people with learning disabilities back in the 1950s and 60s. When he was told by a professor of paediatrics to get his son, “into a home as quickly as you can and get on with your life.”

“We both took the decision to completely ignore his advice. Most people back then took this advice and as a result there were very little people with learning disability out and about in the community. That’s why people stared at you in the street; they weren’t used to seeing people that were different.

Ignoring the professor’s advice, Huw stayed with us until he died aged 27. My wife felt that was right, it was her choice. She got very little support, there was hardly any respite available, and it never seemed to be available when we wanted it.”

Co-founder, Elizabeth FitzRoy was also spurred on to change things for the better as she had similar experiences and reactions from medical professionals to her adopted son who had Down Syndrome.

“We both thought there must be better places for people with learning disabilities than institutions. “Elizabeth had the vision and I and a couple of other like-minded people met up and decided to do something about it.

“It was very hard as the four of us had no money and we had a lot of opposition from local authorities and so-called experts. In our first house we housed four children under 16 with Down’s Syndrome.

“Buying their first home was a huge risk and they had to battle against a lot of scepticism. Opposition ranged from “scorn and ridicule to downright disapproval” with one director of social services “describing us as ‘amateur do-gooders that won’t be around in six months,” he reveals.

“We overcame resistance from people in the local community who didn’t like the idea of a home for ‘such people’ near them, by inviting them in, and explaining our ideas.

When people saw the homely environment, had a chance to meet the residents, they started coming round to the idea.

“With all the scandals we needed and wanted transparency, open for everyone to go and see; we were determined to stop hiding people with learning disabilities behind closed doors. Out of sight out of mind.” FitzRoy’s first home thrived and the charity now supports over 600 adults across 60 locations.

This care model is now common practice in the UK. Changing people’s attitudes to people with learning disabilities has taken years and attitudes are completely different to what they were fifty years ago. “However there is still a residue of people who don’t understand people with learning disabilities and are not aware of the difficulties they face,” says Mr Williams.

“I am so proud of what we have achieved. I look back at how small we were when we started and how big FitzRoy is now".

However despite all the changes that have happened, he says: “We must not be complacent. Our journey is still not complete. As we can see today, when the budget cuts affect local authorities, often the first thing to go is social care. We must never stop educating people at the top that anyone who is disabled should be given the opportunity for a family life. Lest we forget.”