By Sir Roger Singelton, Managing Director of Lumos
I was saddened to hear recently of the death of my old friend – Brian, Lord Rix, a great champion of the rights of disabled people in the UK. At the age of 92, he could look back on a career that moved from comic acting in risqué Whitehall stage farces to decades at the forefront of the campaign to improve the lives of people who had previously been hidden away from society. Reading his obituary in The Times brought home to me just how far the UK has come in the last 60 years in relation to disabled people.
Lumos helps countries reform their care systems so children with learning disabilities are not placed in institutions that are ill-equipped to meet their needs or give them the love they, like all children, need and deserve.
It is so telling that the language and attitudes Brian and his wife Elspet encountered more than 60 years ago after the birth of their daughter Shelley – later identified as having Down’s syndrome – are similar to what we have heard in countries where Lumos works today.
To have been told in 1951 “Your daughter is a mongol” and “Put Shelley away and start again” seems appalling to us now. But we have heard professionals say very similar things to parents in central and Eastern Europe over the last decade. “Put her in an institution, go home and make a healthy one” is not uncommon advice to some parents of disabled children. In my visits to Malaysia, Czech Republic, Bulgaria and Moldova I have heard echoes of the same attitudes Brian encountered.
One word remains particularly disturbing. Brian has spoken movingly of his humiliation at being obliged to have Shelley certified ‘uneducable.’ That is certainly a word we have heard in our work and a concept we reject completely. Shelley, in fact, was supported by her parents to live a fulfilled life to the age of 53. There is no such thing as an ‘uneducable’ child, just systems which fail to cater for the needs of those who most need specialist support.
I got to know Brian Rix as Secretary-General of MENCAP at the same time that I was Chief Executive of Barnardo’s. By the early 1980’s the number of children in large institutions, the then-called mental handicap hospitals, had reduced significantly but there were thousands of adults who had spent most of their lives in them – including Shelley. For much of the 1980s Brian and I, together with the chief executives of Scope (still then called The Spastics Society) and MIND attended the main party conferences to persuade politicians of the need for care in the community, or, as it is known in many countries, deinstitutionalisation. The tactic of persuading politicians of all parties was successful because as the party of government changed, the policy of care in the community remained unchanged.
This is another vital lesson brought home to me by reading about Brian. He played an energetic role in driving the UK on a journey to transform the lives of some of its most vulnerable citizens. Whatever the shortcomings in our contemporary services, no parent of a disabled child would, today, be treated the way Elspet and Brian were.
So in the UK and at Lumos we can say, with confidence, that whilst the British model doesn’t have all the answers, we have achieved a great deal over the last half century. We have moved from an entrenched culture of the institutionalisation of profoundly disabled children to support in families and communities.
We do understand the challenges to reform because we faced and overcame them not so long ago. We can argue, convincingly, that reform is possible and that no child, particularly those with disabilities, should be left till last, when the money has run out, or left behind entirely.
The chances of successful reform are enhanced when you have champions of the calibre of Brian Rix, a man who combined his charisma as an actor with a passion to promote community care and contribute significantly to bringing an end to Victorian institutions. Education for social workers and those with care about vulnerable people in society should include Brian Rix’s life story and the history it illustrates as a mandatory element. He faced the challenges and led many others to overcome them.