Monthly Archives: March 2018

Time to start a New Social Movement?


We need a New Social Movement to fight for a better life for people with learning disabilities. I’ve been at two events this week which lead me to that conclusion.

On Monday I was at the Symposium associated with MadHouse ReExit, the fabulous Access All Areas immersive theatre performance at Shoreditch Town Hall (read about it and book tickets here ). An upbeat event, asking a serious question – Has institutionalisation of people with learning disabilities ended? Answer – No. Not just because of the 3000 or so people locked in Secure Units but because control has been replaced by neglect. False notions of independence accompanied by austerity mean neglect. People are trapped, not nowadays by four walls, charge nurses and keys, but by lack of opportunity, lack of support, by loneliness, and boredom. 

We encouraged everyone who came to sign up to our Manifesto BELONG #LDBelong, to pledge what they can do to support BELONG. One of my pledges was to write this BLOG.

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Today was different. I was with #Justice for LB at Oxford Crown Court to hear the Health and Safety Executive case against Southern Health Foundation Trust. Connor Sparrowhawk died almost 5 years ago. In an institution. An NHS institution. Where the ‘care’ was a disgrace. The other side of the has institutionalisation ended question. No it has not, and in this case incarceration led to death. We all know Connor is not alone in suffering and dying in a twenty-first century institution in what we still delude ourselves into believing is a civilised nation.IMG_1497

Taken together, these two events, the upbeat Symposium and the grindingly sad events at Oxford Crown Court say to me we need to take some collective action. Forget the petty rivalries, differences past slights and grievances, this is too big a challenge to divide us.

One of the speakers on Monday was David Towell. David wrote An Ordinary Life in 1980. It provided the vision for the UK’s brand of closing the hospitals. An ordinary house in an ordinary street. Not a lot to ask, but revolutionary at the time. David worked at the Kings Fund then. I fell to thinking how


the King’s Fund played a very important role in the original deinstitutionalisation movement under David and Andrea Whittaker’s influence. It stood above the fray. It wasn’t Mencap, it wasn’t Govt. It wasn’t professionals but it brought them together, respected by both health and social work sides. It forged a vision (Ordinary Life) and it gave people somewhere to meet. It also, as I recall, had modest amounts of money for things like lunches and travel costs. So that when I entered the field in the mid 1980s Ordinary Life was the only game in town. Nobody but backwoodspeople supported institutions. The reformers had achieved ideological hegemony (thanks Nigel Ingham).

I do believe that once more we need to focus on getting everyone behind a new version of an Ordinary Life, a new vision to unite us, a New Social Movement. Mabel Cooper, self advocate and campaigner who, although she died in 2013, lives on through inspiring Madhouse ReExit would I know agree. If you agree with me, get in touch – please. And sign up to #LDBELONG

Mabel Hon degree 2010

Children who are ‘too complex for the system’ – the All Party Parliamentary Group on children with a learning disability and challenging behaviour

I went to this joint meeting of the All Party Parliamentary Groups on Learning Disability and Children on Monday. For those who have never been to an APPG, they are rather odd occasions. It is never clear who has been invited, and why, and who is in the room, unless you see faces you recognise.

This APPG was chaired by Mark Harper, MP for the Forest of Dean. I found nothing on his website to indicate how he has come to chair the APPG or why he is interested in Learning Disability. He did not explain but was a competent and empathetic chair, the meeting was well run.

It was a meeting of 2 halves. On one side, the great and the good, debating the challenges of treating these young people with compassion and dignity, in a way that supports rather than undermines them and their families. This is where the quotation of the day came – ‘Children who are too complex for the system’. More facts, distressing facts. Despite Transforming Care the numbers of children being detained is increasing (we think – data is flaky). £500 million a year to keep a small number of children in institutions. Lots of money  being spent on the wrong solution. Clinicians feeling powerless – one, a nurse, wept as she told her story of failure. Families encounter a system wall. Education, health, social care pass the buck, not our problem, not ours, not ours. No one talks about reform, we are lost in medicalisation, the default is inaction, no one takes the lead. MPs can help, bang heads together. But no system that relies on MPs having the time, know how and inclination is worthy of the name.

And then, unforgettably there were the families, bravely telling their stories. It’s not the first time I have heard them. It is not the first time they have been told. The stories cut through the crap. Each retelling brings tears and anger, frustration and indignation. But how many more times do they need to be told?

John’s son aged 13, has an autism diagnosis, and behaviours that challenged his school (though not his family). He was spending what John thought was his last weekend at his home before going off to residential school. Then John received a phone call. ‘Don’t bother, he won’t be going away to school. We’ve sectioned him. Don’t care what the law says, it is done’. No hospital or ATU place could be found. He was returned to the care of his family, still sectioned. Covered in bruises. Police said, ‘your son’s non verbal, cannot do anything about it’.

The Local Authority cancelled the boarding school place, without consultation. No education was provided whilst he lived at home, despite the law, and despite requests from John. Finally, no thanks to the Local Authority, the original school place was reinstated. He is there now, we are told he is thriving.

Then Leo. Leo’s son, Stephen has spent 5 years locked in a secure unit. He is on 8 anti-psychotic medicines daily. He has been injured. No action has been taken. There was a plan to release him, a place was found, builders started work. Then the Responsible Clinician changed his mind. The CCG stopped paying the builders. He no longer has a release date.

The law is not defending disabled people. We heard this message again and again. Not defending their rights to care, support, dignity, but also not defending their safety, failing to challenge criminal behaviour. If it were racially motivated or homophobic, action would be taken. But disabled people, it seems, do not count, do not matter.

Is there a solution? We know what the solutions are, have known for years and years. Support families, before they scream for help. Be there, be ready to help, be flexible. Recognise that when you put someone in a distressing situation, you will get a distressed reaction. Institutions are the problem, not the solution. The problem is getting people to remember that, to act on it.

How to make it happen? The APPG felt helpless and hopeless. The law is there, but not being implemented. The Human Rights Act, and the UN Convention are ignored. Leadership is lacking at both local and national level. No one owns the problem. Perverse incentives operate – all the time the NHS pays, Local Authorities don’t have to. And the NHS pays for institutional ‘care’.

Letters will be written from the APPG to the relevant ministers. Answers will be sought. In the meantime, those children are still being locked up, knocked about, dehumanised. For how much longer?