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 Answer – No. Not just because of the 3000 or so people locked in Secure Units but because control has been replaced by neglect.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.

IMG_1482 - Copy

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?


200,000 Applications for Deprivation of Liberty Safeguards in One Year. What is going on?

I was prompted to write this Blog by this information for which I am indebted to an as yet unpublished paper written by

Lucy Series

In2015-16 local authorities in England received almost 200,000 applications for authorisation to deprive a person of their liberty.

She points out that this is more than three times as many detentions as under the Mental Health Act 1983 in the same year and more people than were detained at the height of the asylum era.

And then I was alerted by the inimitable Mark Neary to the extension of these Deprivation of Liberty Safeguards (DOLS) to people living in their own homes:

Steven Neary has had his first Community DoLS and it has been decided that he is being deprived of his liberty in his own home. To quote, “his care and support (1:1 in the home, 2:1 outside) amounts to a deprivation of his liberty”. The fact that he needs a support worker to accompany him when he takes some cake across the road to his uncle is now reframed from the support worker’s presence enabling Steven’s liberty to depriving him of it. This is likely to be the case across the country for every learning disabled person who needs support to live their life.

Neary 2017

What on earth is going on?

We appear to be living at a time when people with learning disabilities (and their families) are either neglected, left to manage in a travesty of a commitment to ‘independence’; or ever more regulated and controlled, subject to incarceration in secure facilities, or surveillance in their own homes.

Being a historian, I turned to the past to try to understand this phenomenon. Surveillance of families is not new. In the 1920s and 1930s, in the era of the now despised Mental Deficiency Act (1913), people who had been ascertained to be ‘defective’ were either taken into institutions, or left in their homes, with quarterly visits from Visitors appointed by and answerable to the Local Authority’s Mental Deficiency Committee. The Visitors reported on their charges. The purpose was explicitly to ensure that ‘defectives’ could not produce children. The Form they were required to complete included this question:

Is it considered that the control available would suffice to prevent the defective from procreating children?

(Model form enclosed with circular letter from Board of Control No. 717, dated January 1929).

If the answer to this question was negative the Committee would take steps to find an institutional place. But if the control was deemed to be adequate, ‘defectives’ were in most areas left to manage as best they could with the help of their families. Occasionally some financial or practical assistance was provided, to pay for dentistry, medical procedures, or even some tuition.

It was in many respects like the situation today. The control /neglect dichotomy is one of history’s great continuities. The contrast is striking: between 1 set of policies that seem to introduce and enforce draconian controls; and other policies that allow/encourage the neglect we know so many people, like Lee Irving[1], suffer. DoLs can regulate every aspect of your life – your home, if you are Steven Neary, is most definitely NOT your castle. But if you are trying to live independently and suffer harassment from neighbours or drug dealers move into your accommodation there is very little help available. If you are a caring family, doing your very best to support a disabled family member, and you ask for some help, as did Sara Ryan, all you get is an institutional place – and in this case with absolutely tragic consequences. One might also suggest that the situation in the 1930s actually offered more support – there are no quarterly visits now to people managing on their own, no little bits of financial help.


Ok, we historians are good at pointing out continuities. But we are not usually as good at suggesting answers. I’m going to have a go.


My first message is that there is no one size fits all policy solution.


Since 1913, there have been broadly 3 policy eras. The first was the institutional solution. This was a response both to eugenic fears – that the ‘feeble-minded’ were reproducing at a faster rate than more intelligent people and must be stopped – but also to stories of neglect and abuse, of people left in workhouses or mental asylums who would benefit from specialist institutions.

The second, starting in the 1970s after the extent of abuse and sheer misery in NHS run institutions was exposed (not note, through regulators but through investigative journalism), was ‘community care’. Although its meanings mutated over time, and according to who was speaking, broadly speaking community care meant building and running both residential homes and day centres to house and give occupation to adults with learning disabilities.

And the third, which really took off in the 21st century, was personalisation, giving people money to run their own lives. This was accompanied by the closure of segregated specialist facilities in favour of people using mainstream services. This is where we are now.


Each of these policy eras has repudiated the past as unenlightened, each has been accompanied by its own compelling ideological baggage, and each has failed. Not, necessarily, because it was wrong, but because it was under-resourced and poorly implemented. Institutions have a place, asylum for those who really struggle to manage, who are abused and taunted and need a place of safety. But not if they are understaffed, shut off, and either under-funded or a source of profit (or both). Personalisation is failing, not because it is wrong, but because it has been grafted onto a system ill adapted to managing it, because it has, conveniently in an era of austerity, taken ‘independence’ at face value to mean neglect, and because there just isn’t enough money.


So where does this leave us? In my view, it suggests that no one policy fits all circumstances. The ‘learning disabilities’ label is applied to a wide range of people, some of whom can flourish with a little support, but many of whom cannot. We will look in vain for the perfect policy answer, it does not exist.


My second point is workforce.


Never, in all the policy changes, has there been commensurate investment in a workforce fit for purpose. Have you ever wondered why it is psychiatrists who are the medics responsible for learning disabilities? It is not, after all, a mental disorder. The reason, according to Mathew Thomson who wrote a magisterial account of Mental Deficiency in the mid twentieth century, was because no one else wanted such a lowly specialty without a cure. Psychiatrists, the lowest of the low in terms of esteem, saw it as a way to carve out territory. This does not mean it is the best solution from the perspective of the people they ‘treat’, but to my knowledge it has not been seriously challenged.


It is not only psychiatrists. The only dedicated professional pathway is nursing. They may do a good job, but it is not ideal when we repudiate a medical model.


The same mistakes keep happening. When the institutions closed many staff just moved over to the new homes, bringing institutional attitudes and practices with them. When personalisation was introduced it was those same local authority personnel who had managed the old ‘we know what is best for you’ system suddenly expected to embrace individual empowerment. It just does not work.


In 1979, Dame Peggy Jay, in one of many reports on learning disability nursing (find it here,) made herself unpopular with the nurses by arguing for a dedicated workforce which combines the best of nursing and social work skills, to make a success of the ‘ordinary life’ her Report advocated. My sense is that we need to revisit this idea of a workforce fit for purpose. It’s not the same sort of workforce Jay advocated because she was visualising people living in groups, staff working in teams. The workforce to make a success of personalisation are people who work, largely unsupervised, in people’s homes, whose job is to support their citizenship. Far from an easy job, yet, there is no training for it.

Because other solutions have failed, are failing and will continue to fail, increasingly people look to the law and to regulation to correct the policy gaps and failings. Hence the DoLs, the ineffectual efforts to reform them, the use of the Human Rights Act to wrestle Steven Neary out of the control of Hillingdon Local Authority, the feeble CQC reporting but not acting when care is appalling. Both law and regulation are blunt instruments, incapable of making sense of and managing the many and diverse human dilemmas thrown up by the challenge of supporting people with learning disabilities to be fellow citizens. Maybe, just maybe, people trained specifically to that end, trained by people like Steven and Mark Neary, Sara Ryan, Gary Bourlet, Learning Disability England and my friends at My Life My Choice, might be a way to really make a difference.




[1] Murdered by his so-called ‘friends’


Campaigners in mental health have long adopted the label ‘survivor’ to indicate both their journey through an often unhelpful system of care and their resilience in surviving to fight another day.

But to my knowledge this term has not been used by people with learning difficulties. This is surprising. Many leading self advocates I have met are challenged that they are not ‘really’ disabled because they appear self confident, poised, capable and professional. It is a double bind. The more skilled they appear as leaders, the more likely it is that they are dismissed as wrongly labelled and ‘unrepresentative’. Yet I know, because they have shared some of their life stories, that, despite appearances, they have gone through special education, they have been assessed, been obliged to live with people they have not chosen in group homes or supported living, or, worse, in secure accommodation. They have known what is is like to pass your days in adult training centres, or sitting at home for lack of money, support or opportunity.

Labelling yourself as a ‘survivor’ in such circumstances seems entirely justifiable. And a good way to counter those people who want to dismiss you for being too effective.

Time not to stay silent

Yesterday we launched these learning materials about the history of learning disability in this country. http://bit.ly/2gyzIFG. We heard from Deb Evans about her son, Eden, who has been institutionalised since he was 17. He is now 25. It was a reminder that institutions are not only a thing of the past.

Being at the launch set me thinking afresh about the scandal of the way people with learning disabilities have been treated, and continue to be treated in our ‘civilised’ nation. Legislation in 1913 authorised people with learning disabilities to be shut away. People spent years, decades, even a lifetime in those places. They were not criminals. Merely unfortunate enough to have failed ill thought through tests. What is the difference between a stone and an egg?

Shamefully, only 2 MPs spoke against the new law in 1913. For over 30 years no one spoke out against it. Not until the National Council for Civil Liberties published ‘50,000 Outside the Law’ in 1951 is there a record of anything but individual resistance, mostly from families. People stayed silent, ashamed, cowed, or gullible enough to believe the false science behind the belief that learning disability is inherited, so they have to be prevented from ‘breeding’.

Now, 3000 people remain shut away in distant and unresponsive (at best) institutions. Sara Ryan’s latest posts tracking the events around Connor’s death, and her questions about the death of Henry Chilton who died in the same bath as Connor, remind us that it is time NOT to stay silent about the incarceration, and the unnecessary deaths of people with learning disabilities, now and in the past.

Connor’s story shows that even with the most determined and well informed family advocacy, and support, getting to the truth is a hard road. Those responsible fought every step of the way to obfuscate and evade responsibility. The ‘system’ failed that family at every juncture. They have prevailed to the extent that there was a verdict of death by neglect, and, eventually, the Chief Executive resigned – over three years later. But as yet no steps have been taken to discipline those staff responsible for the death. How many more deaths remain unexplained, hidden, unavenged? We know some of the names. Thomas Rawnsley. Stephanie Bincliffe. Nico Reed. ‘Amy’, aged 14. Those other deaths Southern Health failed to investigate, as so graphically illustrated by the 2015 Mazars Report.

All this makes me wonder how many unnecessary, unexplained and uninvestigated deaths took place in those closed institutions of the past, where families were kept at bay, not even allowed to visit the wards where relatives lived. Places that relied on drugs to keep their patients docile enough to be managed by a 1:20 staff patient ratio. Places where mail was censored, patients not able to access phones or helplines or relatives. We simply do not know. And we should find out.

We do know that there was widespread abuse. How? Because people talk about it. One man spoke in public about how, when the lights went out, after they had gone to bed, the staff worked their way along the ward, systematically sexually abusing him and other patients. Every night..Yet how many cases of historic abuse of people who lived in learning disability institutions have you read about? Where is the high profile public enquiry? Where the public apology? If Sara Ryan has struggled in an age galvanised by social media and with Freedom of Information legislation, what chance did families have when allowed to visit only once a month, and then closely supervised.

Today there remain at least 3000 people shut away in institutions. Like their pre NHS twentieth century predecessors, many are run for profit. What incentive to release the unfortunate cash cows that are their patients? Even NHS beds, because of the way services are commissioned, need people in them, or the Trust loses money. Transforming Care is charged with getting people home, but the forces ranged against it are powerful. It is time to speak out, NOT to stay silent, about this continuing state sanctioned abuse of people with learning disabilities.

What is in a name?

Chris Hatton’s fascinating post here about change (or not) in the number of in-patient beds for people with learning disabilities, concluded that there were almost as many beds as pre Winterbourne View, but some providers had changed the names of their institutions to care homes, with or without nursing, for example. It started me thinking about the role played by language in  talking about the difficult topic that is learning disability.

I have spent more time than I care to remember in discussions about the right language to use. If we had spent as much time discussing things that really matter, like how to change people’s attitudes, or how to secure a better life for people with learning difficulties, maybe we’d have made better use of our time. This is a group of people whose labels have changed with alarming rapidity. The table illustrates the plethora of terms used over the past century or so. Many are now terms of abuse, but in their day they were the pukka words to use.


Label Dates in use (in England unless otherwise stated) Origin
1862 – 1950s Dr John Langdon Down identified Downs Syndrome, and classified people with DS as a ‘Mongolian’ type of ‘idiot’
Defective 1880-1959 Cross Commission 1886

1913 Mental Deficiency Act (repealed in 1959)

Idiot 1880 – 1959 Idiots Act (1886)

Mental Deficiency Act 1913

Imbecile 1913-1959 MD Act 1913 – 1959
Feeble-minded 1913-1959 MD Act 1913-1959
Moral Defective
1913 – 1930s MD Act 1913, dropped out of use in 1930s
Dull First recorded c. 1886
Moron Early C20 A medical term denoting an adult with a mental age of about 8–12): from Greek mōron, neuter of mōros ‘foolish’.
Cretin Eighteenth century Refers to medical condition (due to thyroid deficiency) common in some parts of Switzerland
Backward 1880s – 1950s National Association for Parents of Backward Children, later Mencap 1940s to c.1970
Ineducable 1944 – 1971 1944 Education Act excluded children with IQ below 50 from school
Spastic In use since eighteenth century, became term of abuse in 1970s Person with Cerebral Palsy, medical condition, which affects control of limbs
Sub normal / severely Sub normal
1959 – 1971 Mental Health Act 1959
Mentally handicapped 1960s – 1980s Better Services for the Mentally Handicapped 1971
People with Mental Handicap 1980s Gradually replaced ‘mentally handicapped’ in 1980s
Special Needs 1978 – today Warnock Report 1978
People with learning disabilities 1990 – today Adopted by Government c. 1990, used in ‘Valuing People’ (2001), ‘Valuing People Now’ (2009)
People with learning difficulties 1980s – today Self advocates’ preferred term
Retarded / Retards 1940s to c.2000 Official term used in USA until replaced by ‘intellectual disability’ in early C21
People with intellectual disabilities 2000 onwards Australia, NZ, US, Canada, some UK


In thinking about language, I turn to Valerie Sinason. In a book published in 1992, ‘Mental Handicap (sic) and the Human Condition’, Valerie argued that the frequent changes in language is akin to laundering. This laundering serves to mask our discomfort with intellectual impairment, and to distance ourselves from that discomfort. Changing the words enables us to set ourselves apart from our predecessors, to tell ourselves that we know better. She wrote:

Each worker introducing a new term hopes that the new word brings new hope and a new period of historical change. Each time the new word is coined, it is coined honourably … Each such chapter praises itself for a hopeful new term. It is therefore doing a grave disservice to past pioneers to point contemptuously to their chosen term.

(Sinason 1992 p.40)

This insight helped me to develop the argument that I first published in ‘Towards a Good Life’ (Johnson and Walmsley 2010) that each generation repudiates, not only the language but the legislation, the policy and the practices of its predecessor. Thus, almost as fast as we have changed the language, we have lurched from institutions to ‘community care’ – hostels and day centres – to small group homes, to independent living, supported living, and now individual budgets. The previous policy is rejected as completely wrong and indefensible, to be jettisoned in favour of the new panacea. This startling turnover of policy ideas prevents real learning from the past, and falsely promises wholesale change for the better, just by repainting the words on the door.  In practice, I would argue, many fundamentals have not changed. Sally Philips’ BBC documentary on Downs Syndrome provided a neat, albeit chilling illustration. Medical staff continue to treat the birth of a child with learning difficulties as a disaster, just as they did in the days families were told to ‘put him away and forget about him’. Mothers are permitted, nay encouraged to abort a foetus if tests show s/he has Downs Syndrome, and abortion is legal until very late in the pregnancy in such circumstances. The easy assumption that all this is OK shows the low value which continues to be placed on people with learning difficulties,  despite changing language and changing policy. I could go on to argue the persistence of eugenic ideas when it comes to childbearing and rearing if you are a woman with a learning difficulty, but I will leave that to another cheerful post.


Remembering for the Future

Remembering for the Future is the name of the conference held at Liverpool Hope University on 2nd September. It was a joyous occasion, maybe because, unusually for an academic conference, self advocates outnumbered academics, albeit by a small margin. The conference was about looking at history and asking if it can help us understand what is happening today; and help to plot a way forward.

I was only able to attend 1 in 3 of the sessions, and the generously timed plenary. From what I observed, the conference more than fulfilled its aim of illuminating the present by reference to the past.

Big recurring themes included the state of self advocacy today, and its decline since the heyday in the 1990s. A lot of the self advocates there recalled how it had been 20 years ago. Said Lou Townson, once self advocates and staff were friends, but now, if a staff member at her People First group gives out their number, they are disciplined, and the PF member is asked to delete the number. Gary Bourlet remembered that the leading self advocacy groups regularly met together, knew one another well, and were able to plan campaigns as a result. He also remembered being asked to choose between 2 PF groups who were vying to lead self advocacy in England. He declined to take sides.

A lot of this decline is explained by funding models. In the 90s groups were funded by the National Lottery. They were able to operate independently, and with confidence of continuing funding. Since Valuing People in 2001 money for self advocacy became the responsibility of Local Authorities. Under the twin pressures of being required to prove value for money, and austerity cutting into Local Authority budgets this funding has dried up. Some groups have found other ways to survive, others have gone to the wall. But everyone present agreed that self advocacy in England has lost touch with its grass roots, and is driven by project funding, leaving little time to nurture new talent, or to make contact with other groups. And yet, with austerity biting into people’s income and support it is more than ever needed.

The conference energised people to think of ways to revive self advocacy. A pride day. Crowd funding for a national conference in 2017, to reconnect and renergise the movement. Great to see this, and a job for Learning Disability England and its well wishers to make this happen.

Another theme was a stubborn failure to fundamentally change the disadvantages, slights and abuse experienced by people with learning disabilities. Members of Mersey PF responded energetically to Steve Mee’s question, why do some people think it is ok to punish the people with learning disabilities they are looking after. TO Steve’s credit, he only got through 3 of his slides, so energetic was the audience response to his exposition of  Wolfensberger’s explanation of how devaluing images of people with learning disabilities play into staff behaviour. So many examples were quoted. To me, the most memorable was a self advocate describing how ‘bad’ behaviour led to her being pinned to the floor while tra quilling drugs we pumped into her bum. And when she protested staff saying ‘you Re only here because no one else wanted you’. How brave to remember that, and to survive to tell the tale and fight back.

I ended the day feeling more optimistic, energised and determined than I have for some time. and wondering why self advocates have never adopted the idea of describing themselves as ‘survivors’ of a degrading and dehumanising system.

Thanks due to Lee Humber, to Liverpool Hope University for hosting, and to Mersey People First who helped organise it and turned up in force. As well as all the people who gave papers and joined in with gusto.

Why History? Some answers from the Social History of Learning Disability Conference 2016

‘Forgetting the extermination is the final act of the extermination itself’ (Raoul Hilberg)

I raised in a previous blog my concern that spending time thinking about the past is an unnecessary luxury when making things better in the present needs all our attention. And this week I had the luxury of being able to spend 2 days thinking about this at the Social History of Learning Disabilities Conference, in Milton Keynes. I came away more than ever convinced that it really matters to remember the past, and use it to reflect upon the present.

The question, why history? was answered by all the speakers, in different ways.

Perhaps the most direct messages came from two women who used the platform to tell us about their lives.

Angela told us how she had been beaten by her mum, until rescued by Oakley Grange Day Centre, and placed with foster parents. I had known Angela for years, but I didn’t know that about her. She thought it important that we hear her story.

Sue, like Angela from Central England People First, told the conference that she had once had a job, in the shoe factories of Northamptonshire. But since they closed down she has been unemployed. She now volunteers for Central England, and is their secretary.

Mencap Cymru’s Hidden Now Heard team, who are collecting stories from people who lived, worked in or knew about the four large long stay hospitals in Wales, explained how difficult it has been to actually speak to former residents. Many are now very old, as Wales’s closure programme goes back to the 1980s, but this is not the only difficulty. The speakers explained that speaking to former residents, to ask them if they did want to take part, was frequently impossible because support workers speak for them, and decline in the belief that it would be upsetting to remember the past. Despite being out of the hospitals, these former residents were not given the choice to make for themselves. Conversely, staff are only too willing to come forward – clearly memory is less problematic when you do not have the label of learning disability ….!! Some things have not changed as much as we would hope.

Helen Atherton and colleagues from the Brandesburton Hospital Oral History Project reported similar barriers. And their difficulties have been compounded by stringent (and unnecessary?) restrictions on use of photos by the University Ethics Committee. Clearly history matters so much, that many devices are in use (including Ethics, Health and Safety, Data Protection, Confidentiality, the Mental Capacity Act) to prevent people even being given the chance to tell their stories. I wonder why ….

David Stewart chose four people’s stories from the nineteenth century to show that if families had money, life could be Ok for people with learning difficulties; whilst it was pretty dire for those with little money. On the other hand, wealthier families could be persuaded to send their relatives to places which were manifestly unsuitable, believing that their relative would benefit. So, money was not the sole determinant of a good life -prompting me to reflect upon the huge amount spent on ATU places today.

Light was shone on contemporary reluctance to disturb the ghosts of the past by David O’Driscoll, who is that rare beast, an NHS history worker (part time). David pointed out that the NHS has a pretty poor record of caring for people with learning disabilities. Not only the iniquities of care in some long stay hospitals, but continuous and distressing evidence of failure to treat people well when they are sick now. But the NHS is determined not to think about the past. We all know that the physical incarnations of institutions have been airbrushed out of history , replaced by modern, often luxury flats. More often than not, with no memorial to say that people once lived and died here, whose graves are unmarked, whose lives are unremembered. The NHS seems to be trying to be an organisation without a memory of the ways it has failed people with learning difficulties – and, if Southern Health’s record is anything to go by, is continuing to do so.

Simon Jarrett gave a strong framework for thinking about history in his Keynote speech ‘ The history of the history of learning disability’. He divided the history of history into 3:

The history of medicine and doctors and institutions who had laid claim to expertise in treating people with learning disabilities. This prevailed into the final quarter of the C20

Then it was people like me, the second wave, social historians who emphasised the importance of history with as well as about.

And, more recently, cultural historians like Tim Stainton and Chris Goodey, who argue that intellectual disability is the invention of a society which values intellectual prowess above all else.

What these histories have in common, until quite recently, has been a belief that the past was bad and the present better. But taking a more objective position might prompt us to stop and think. The past was not always so bad, the present is not always better. We had examples at the Conference. That residents of long stay hospitals, some of them, almost certainly had more opportunities for sexual enjoyment than people in community homes now, for example. And, Simon noted, picking up themes from earlier speakers, that modern legislation (MCA, Data Protection etc.), almost always well intentioned in its execution, is having the effect of silencing people in the name of keeping them safe. This, he remarked, is a very modern preoccupation.

But, if we still need reminding why history matters, the next speaker, from Austria, Gerhard Hofer, held the trump card. Gerhard told the story of the extermination of Austrians with learning difficulties during the holocaust. Maybe 150,000 people killed. One parent was told in a letter that her daughter had died because of an epileptic fit. Connor Sparrowhawk’s story came into my head at that point. Unlike here, where all trace of the old institutions has been vanished, in Austria the sites of the killings are places of memory. Kathi Lampert, one of the victims of the holocaust, has had her name remembered in the name of the Austrian School of Social Care Education. Gerhard read us a letter written to Kathi by a young student at this School. Unbearably moving.

‘Forgetting the extermination is the final act of the extermination itself’ (Raoul Hilberg).

There is lots more to say about the Conference, but I cannot improve on that last sentence.

Whose Voice counts?

I blogged last week about the fabulous launch of Learning Disability England. But noted then that there are pitfalls which have confounded previous attempts to speak with a loud and united voice by, for, with and on behalf of people with learning disabilities.

It was therefore not a surprise (although slightly disappointing) to see the knives coming out already. What are the grounds for criticising LDE? In the case I saw, it is that this is an organisation which has the temerity to include families AND service providers alongsde people with learning disabilities. And that these voices might drown out the voices of self advocates. Notwithstanding the very clear message from LDE that it will be led by self advocates. A message strongly reinforced at the launch on 14th June, where self advocates easily outnumbered others on the platform; and when the only lifelong membership awards were to self advocates.

The question of who can speak with people with learning disabilites has a long history. I won’t go into it here, but will be publishing and speaking about it in the next few months. Suffice to say, the early parents’ movement was paternalistic, patronising, and often infantilising. But it did contribute to closing institutions, and above all it shouted the message that our sons and daughters are human beings too and deserve support and recognition, not confinement. At a time when too many people were just locked away, and forgotten about. That was so important.

Then along came self advocacy, in the 1980s. ‘Speaking for Ourselves’ its watchword. It drove a wedge between families and people with learning disabilities as a political voice. It needed to, because families had too easily assumed that they knew best. The upshot was that two Forums, not one, were set up in the wake of Valuing People; one, the National Forum, representing self advocates; the other, the National Valuing Families Forum. Two voices (at least), not one.

I have since the 1980s been an active and passionate supporter of self advocacy. It truly has transformed the way some people with learning disabilities are viewed, and view themselves. I am proud to count self advocates amongst my friends.

BUT, alone self advocates have had little impact on national policy. The Valuing People process included self advocates (and families), but without significant behind the scenes manouevring by a group of academics and others to gain the trust and support of Minister John Hutton, there would not have been a White Paper in 2001. Self advocacy was supported in the White Paper, and money was set aside for it as part of the White Paper legacy. But self advocates were not strong enough to retain that funding. And now state funding for self advocacy is shrinking fast, many self advocacy organisations are struggling, and many areas are devoid of self advocacy groups. It is hard to believe that self advocates alone will be able to exert the pressure we need.

At a time when social care funding is under unprecedented pressure, when there are still at least 3000 people detained in ATUs, and when it appears that more than one NHS Trust fails to investigate unexpected deaths of people with learning disabilities, i am convinced that families and people with learning disabilities have more to gain by working together than by focussing on the issues that divide them. Justice for LB has shown the way, a family initiated campaign supported at every turn by Oxfordshire’s Self advocacy group My Life My Choice. We need a very loud and united voice for people with learning disablities. This is why I wholeheartedly support the coalition represented by Learning Disability England.