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.

Launch of Learning Disability England June 14th 2016

It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now. Gary Bourlet puts it well here http://peoplefirstengland.org.uk/gary-bourlet/were-launching-learning-disability-england/

Our host was Baroness Sheila Hollins, and she was joined on the platform by another redoubtable House of Lords campaigner, Jane Campbell. Jane’s speech was especially memorable, on an exceptionally memorable day. I liked ‘We are not vulnerable, we just find ourselves in vulnerable situations’. And, momentously, she acknowledged something people associated with self advocacy have been saying and thinking for many years, that the early disabled people’s movement, of which she was a leading light, failed to acknowledge the voice and different experiences of people with learning disabilities. She promised this will change.

A minute’s silence for all those who have died in Assessment and Treatment Units was incredibly moving. And, personally, I was delighted that my dear old friend Jackie Downer was one of a number of self advocates who were awarded lifetime membership of LDE.

As ever, I was prompted to thnk about the historical context. A united voice for people with learning disabilities in England (unlike Scotland and Wales which both have national People Firsts) has been a very long time coming – and, although I hope to be proved wrong, I am not sure it is here yet. I remembered a conference back in 1994 which sought to set up a national People First in England. Held in an anonymous hotel in Daventry, of all places, one man and one woman from every town or county was invited. Many places responded. Some delegates had never been out of their home towns before, let alone to a national conference, whilst others, like Lloyd Page, Nigel Lott and Ian Davies were experienced campaigners. Another amazing time observing self advocacy at work, one of so many I’ve been privileged to experience in my life. It was a harmonious occasion, and was crowned with a visit from John Bowis, then a minister (in a Tory Government) who offered £50,000 (as I recall) to set up a national organisation. Hard to believe it, but I saw and heard this. Unfortunately, there was one large and well established self advocacy organisation who refused to play ball. And the initiative foundered. Until today, that was as near as we have come to a united voice for self advocacy in England.

But there were significant absences yesterday too. Mencap, the self proclaimed ‘Voice’ of learning disability, was not represented. And I saw few National Forum members, although leading members of the National Valuing Families Forum were there. Is this ominous? I really hope not. As I said, this united voice really is needed, and it is to the credit of all involved that it has got this far, with many well wishers. If you agree with me then do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.

Why should academics support Learning Disability England?


Learning Disability England launches in June, next month. It is a broad coalition of people and organisations, led by self advocates, who believe people with learning disabilities and their families need a loud and effective voice. This is why I think academics need to be involved.

Back in 2015, I answered a call Simon Duffy put out challenging academics to rally round the Learning Disability Alliance. I offered to help. It has taken a lot longer than I thought possible, but now we are ready to launch a network of academics to support LDE.

Of course, this is not new. A lot of academics have already been active supporting families and people with learning difficulties to fight for justice, particularly the Justice for Laughing Boy campaign (#justiceforLB). The Network is a way of getting more people involved, supporting a broader range of campaigns. Without doing too much advertising over 30 people have signed up to these principles:

1.       We will do everything we can to uphold the UN Convention on the Rights of People with Disabilities
2.       We will argue for a fairer share of resources for disabled people 
3.       We will seek to promote teaching and research which is likely to be of value to people with learning disabilities and their families; and to share research in ways that are accessible
4.       We will take every opportunity to listen to and understand the concerns of people with learning disabilities and families to find out how we as academics can best support them.


Why am I excited about this development?

There are two reasons.

The first is a negative impulse. I have watched in despair as so much that we fought for since the 1980s vanishes. The list is long. The closure of institutions, financial provision for families and people with learning difficulties, a broad consensus that these are people who deserve support, self advocacy groups, individual budgets, all in danger. Whereas once, young people with learning difficulties could expect to have help in finding a home on reaching their twenties, now they are forced to stay with families – or, if ‘challenging’, in danger of being taken off into the uncaring care of ATUs and similar. Families are either unsupported or kept at a distance. And people are dying, because of (proven or suspected) negligence. Connor Sparrowhawk, Thomas Rawnsley, Nico Reed, and many others who die prematurely because they do not get top quality timely health care.  What can I do to help? The Network is part of my answer.

Secondly, and this is a more upbeat message, I am excited about the possibilities of bringing academics into dialogue with self advocates and families. If I am known for anything, it is probably championing ‘inclusive research’, research where people with learning difficulties are equal partners, in deciding what questions to ask, and how, in working alongside researchers to do the work, and share it. The advent of LDE opens up the possibility of taking this further. If we, as academics, can work with self advocates and families, we stand a chance of identifying shared research priorities. In a way that has rarely been achieved since Mike Oliver called for ‘emancipatory’ research controlled by disabled people in 1992, I can see the potential of the agenda being set by self advocates, and families, with academics advising, helping to get the funding, and working in partnership to actually do the research. It is rather like Knowledge Exchange, which has brought academics and business together for mutual benefit. I dream of something similar working for social change.

What might we do?


Gather evidence about what is happening and share it on the LDE website.

Encourage students to make contact with self advocates and families, hear their concerns and perspectives

Support students to work in collaboration with self advocates on projects and dissertations.

Argue for a change in culture so that is seen as the way we do things to work in partnership with people who might benefit from research

Summarise research findings on topics that matter to people with learning difficulties and families in plain English, share via the website and LD ELF.

Share expertise in creating easy read information

Analyse data (a la Chris Hatton Blog) and share

Join specific campaigns as advisors


If you are a student, a researcher, a teacher in higher education and want to join us? Just get in touch with me via email – janwalmsleyassociates@gmail.com


#7daysofaction Why History?

I felt like a murderess. I really felt I had condemned him to death. And that was when I threw myself into Mencap heart and soul. I thought I must fight for all those who are in the community because perhaps parents won’t have to undergo this trauma in the future if we can improve services in the community. I won’t give up until I die.

This was Rene Harris, a founder of Luton Mencap Society, speaking to me about her decision to put her adolescent son, Colin, into Bromham mental handicap hospital in 1954.

There are uncanny echoes of Rene’s words in this blog, written by Paula Rawnsley for #7daysofaction in 2016:

I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go…. I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands.

Unlike Rene’s son, Colin, Thomas did die. His case will be the subject of an inquest. And like Rene, though using different media – Twitter and Facebook rather than fetes and coffee mornings – Paula is campaigning in #7daysofaction so that others do not have to undergo the trauma.

The parallels are striking. An adolescent boy, a family asking for help to manage him as he struggles to come to terms with growing up. And the response, at a distance of 60 years, is to put the young man away, cut him off from family and all that is familiar.

In this blog I explore those parallels, and ask whether there is hope.

The week beginning 18th April 2016 was designated a week to really push home the message that 3000 citizens are detained in Assessment and Treatment Units across England; and that this must end. It’s a campaign spearheaded by families, like Paula Rawnsley, whose relatives are (or were) in these Units. Each day a new harrowing story of an individual who, because of the absence of support and understanding for them and their families at key points in their lives – often adolescence – found themselves taken away  from all that was familiar, and placed in a sterile environment, frequently miles from their homes, where relatives need permission to visit.

How can this be? In 2010, I along with many others, celebrated the final closure of Orchard View, the ‘last learning disability hospital to close’. Despite the shortcomings of ‘care in the community’, it was an important landmark. Yet, even then, I knew this was not the end of institutions. It was just that it was the last NHS hospital to close. Except it wasn’t because as hospitals closed Trusts were busily building units on the campus to house the people they could not be bothered to support elsewhere. One of these I visited, on the site of St Ebbas Hospital Surrey. It housed people who, in their frustration tore down curtains, damaged furniture, behind closed doors and high wire fences. The TV was high on the wall. There were no carpets, just bare floors and equally bare furniture. As researchers we were not welcomed. And then there is Calderstones, housing over 200 people. Its closure has recently been announced a decade after its first closure. How many closures can any hospital need?

It is families who are leading #7days of action. Families have long been the driving force to close institutions. It was Judy Fryd who, in 1946, took the first step of a movement which continues to this day. She published an appeal in Nursery World to hear from other parents in her situation, alone at home with their ‘mentally deficient’ child. She started a ball rolling which eventually created the organisation we know as mencap. Rene Harris, whom I quoted above, was inspired by Judy Fryd. Mark Neary is the spearhead of #7daysofaction. His son spent a year in an ATU, following a short spell in respite when his dad needed to go into hospital. His Local Authority, reacting not to Steven’s distress at being plucked from everything he knew and made him feel safe, but to some higher order imperative, announced that Steven needed secure accommodation. And Mark had a devil of a job to get him back.

Each heart rending story is different. But there are obvious trigger points. Frequently, as young people with autism and complex needs get into their teens, not only do they struggle with the changes associated with adolescence, they also begin to face the truth that their lives will not be like those of their siblings. They will not leave school get a job, go away to Uni or College, they are unlikely to get a girl or boyfriend, their lives will probably be sheltered and limited. There is a reaction, a change in behaviour, often violence or depression. The family asks for help. No help is forthcoming. Other than the offer of a place in an institution. In the 1950s the advice given to Rene Harris, and many others, was ‘put him away and forget about him’. Now it is more subtle – ‘assessment’, ‘treatment’, beguiling terms which give hope to embattled families. But the result is the same. The young person is removed, often triggering a further round of ‘challenging behaviour’, which is not understood as a response to traumatic separation, but is seen as a further justification to keep the person detained. And the family is left, regretting their decision to comply, but now the situation has gone beyond their control.

A further parallel with earlier parent struggles is the determination of the authorities to deny families access to relatives. In the days of the long stay hospitals this was done by placing people in distant often rural sites, with poor public transport. Visiting times were limited to half a day once a month. Families were prevented from seeing the wards. Mail was censored. Home leave was often denied even at Christmas.

Has much changed since? Not much as far as the stories in #7daysofaction are concerned. Almost half of the people detained in inpatient services are more than 50 km from their homes. Families face long journeys. Their access to their relatives is restricted. Home leave is often denied:

Just before Christmas 2015, Nina Ni, went to visit her son, Tizane, in the ATU he is currently being detained in. Tizane had been unsettled for days. He had repeatedly asked to spend some time at home over Christmas but this had been refused by the Responsible Clinician.


In the past, the belief that learning disability was inherited gave professionals confidence in denying families access. Now the argument is that as adults people have the right to choose whether to see their families – and all too often, as Sara Ryan’s painfully documented account of her son’s detention and death in the Slade Unit in Oxford shows, professionals choose to believe that the choice is not to see them. The result is the same. Families kept at arm’s length, sometimes with disastrous results, as in Connor Sparrowhawk’s case.

There are differences too. To our shame, little is known about death rates in mental handicap hospitals, but some sampling suggests they were high. Undoubtedly many people died prematurely in institutions, from accidents, and pre antibiotics, from infectious disease. Too many young people, like Thomas Rawnsley and Connor Sparrowhawk have died whilst detained in modern institutions. Without their families’ ferocious campaigning these deaths might have been swept under the carpet. But, thanks to social media and those same families, we know about them. The closed doors are not quite as closed as they were.

Is there hope? I think so. Families coming together in campaigns such as #7daysofaction is probably the most significant development in learning disability for decades, since Mencap lost its way, back in the 90s. These families are leading a loose but powerful alliance of people, to put continuous pressure on a resistant and complex system, to hold the NHSE Transforming Care Team to account for their actions. And to use the appeal to our common humanity to garner wider support, from press, media and the public. What next? We can’t let up. Media attention is brief unless fed with new stories. We can all help to keep the media beast fed, to keep those 3000 detainees in the public eye, until they are brought home, and those Units closed.


Rene Harris’s words are from a chapter I wrote with her in a book called Witnesses to Change, edited by Sheena Rolph, Dorothy Atkinson, Melanie Nind and John Welshman, and published by BILD in 2005. It is a great resource for anyone interested in families, learning difficulties and history


Making choices about contraception – or not

Contraception for women with learning disabilities is a controversial and little discussed topic. The silence is an overhang from the days when people were segregated to prevent their becoming parents. We don’t need to go to those lengths now we have the technology to prevent conception.

But of course things have changed. Now we have bold statements like this one from Valuing People Now published in 2009:

People with learning disabilities have the choice to have relationships, become parents and continue to be parents, and are supported to do so.

And the 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by the UK in 2009, also upholds disabled people’s rights to found a family and to decide on the number and spacing of their children (Article 23).

In practice it is far less simple than this. Michelle McCarthy found that the women she spoke to typically had ‘just in case’ contraception, even if they were not in a relationship; started contraceptive use earlier and continued it later than other women; and had little agency in the decision to use contraception in the first place, which type to use, and for how long.

I have never forgotten reading, courtesy of John Pring that the women who were systematically raped by Gordon Rowe, the proprietor of the LongCare residential home in Buckinghamshire, were given injectable contraception in the lavatory off the reception area every month while the GP chatted to Rowe. And I was shocked when interviewing a GP in leafy Oxfordshire to be told that she had discontinued her predecessor’s practice of visiting local residential homes to administer contraception to all the female residents. This was in 2012. Good for her, but how many other GPs do what her predecessor had done? We have no way of knowing.

A team at the Open University pursued the question about contraceptive choice. With the financial support of the Open Society Foundations, we interviewed 19 women who had the label of learning disability and who were using, or had used contraception. Finding them was difficult. Most agencies we approached, and this included advocacy organisations, declined or failed to respond. It was only through finding two organisations where managers recognised this as important that we could find women to approach for an  interview.

Our other challenge as researchers was that women frequently were taking contraceptives to manage menstruation, and did not recognise that they were using contraceptives. Nor did they necessarily know which contraceptives they were using.

Whether they had made choices about using contraceptives was a moot point. Some women clearly had made informed choices, and described declining to use them when they were not in a sexual relationship. But for many there was a mixture of persuasion and threat, expressed well in this quotation:

I never want children, would be too hard for me and social worker would take them away.

Several women who were using contraceptives to manage periods reported that they were ineffective – but had never had the opportunity to report this to their GP, and request an alternative.

Overall, it was a pretty bleak picture, and one which raised almost as many questions as it answered. It certainly suggested that those bold statements about rights cannot be taken at face value. And for me it raises questions about the contribution long term, and rarely reviewed use of contracption might be making to the low life expectancy of women with learning disabilities – 60, as reported in the Confidential Enquiry, even lower than that of men with learning disabilities.

You can read the report in full here, including references to the research base.

Open University Report into Contraceptive Choice




Families, learning disabilities and the state

Today family members and self advocates and other people who care about people with learning disabilities travelled to Southampton in driving rain in the hope of seeing justice done, for Laughing Boy and for the many others who have died unexpectedly, and without proper investigation at the hands of an uncaring NHS organisation. The justice has not yet arrived. I believe that it will.

After much deliberation I did not join them. I could not face the early start, and the lengthy journey, around a choc a bloc M25 on a Monday morning. Instead I decided to use the time to try to say something useful. Here’s my attempt.

Sara Ryan’s courageous campaign has highlighted many shortcomings in the way people with learning disabilities are treated. One of these is the demonization of families who speak out, challenge, argue, and try to secure a better life for their relatives. She has been described more than once as ‘toxic’. Her courage has emboldened other families to describe their own treatment at the hands of professionals. On the face of it this hostility is mysterious. The social care system relies on families doing most of the caring. If they did not it would most certainly collapse. And, professionals should have the best interests of people with learning disabilities at the heart of everything they do. This is true also of most if not all families. So why the animosity? I don’t think I have an answer. I can show it has a long history.

In the early twentieth century there was no attempt to hide the belief that families were to blame. Mental deficiency was inherited, so it was believed, therefore it was legitimate to treat families with suspicion, and keep them at arms’ length. The ‘colonies’ in which many people were warehoused to prevent them having children were often in remote locations, hard to reach by public transport. Visiting hours were restricted to once or twice a month. Families never got to see behind the scenes, where their relatives lived. And outgoing mail was censored. What is less known is that when people were ‘ascertained’ as being ‘mentally defective’ but remained with their families, those families were kept under surveillance. Living with family was probably the situation for the majority of people, as it is today. Officials would visit once a month to check up on the families. There was a standard form to complete, issued by the Board of Control. It asked about the family’s income, the number of bedrooms, the cleanliness of the home, the ‘character and conduct’ of the defective, health, employment, leisure activities. It also asked about the ‘supervision and control exercised over the defective’. This included the question:

Is the general supervision sufficient to minimise the risk of marriage and the precreation of children?

Families were, in effect, expected to be jailers. If they failed in this, there was a likelihood that their relative would be removed.

The Visitors’ comments were sometimes quite sympathetic. They could recommend that some small material comfort was offered, a clothing grant, money for dentistry. But often they were highly judgmental. This comes from a form completed on a young woman in 1946.

She (the mother) was hostile and rude …. She is a foolish woman …

This language is not unusual.

After World War 2 there was a gradual change in the language used. It becomes noticeable that around 1950 pity rather than condemnation begins to creep into official language. ‘Poor little souls’ and the like. And there grew a recognition that families deserved support in caring, hence the growth of day centres, respite care, and residential facilities. There are some good stories from this period. Ann and Michael Tombs recalled that as Mencap activists they had direct access to David Clifton, Bedfordshire’s Director of Social Services in the 1970s,  and a lot was achieved. But more often families had to battle to be heard, and many services which, in today’s language, had been co-produced, with the active support of families, were gradually taken over by Social Services, and the sense of partnership was lost.

In the 1980s the advent of self advocacy ironically gave professionals and statutory services the perfect excuse once again to keep families at a distance. The argument that families had no place in decision-making for adults gained traction, and was underlined by movements like Citizen Advocacy which argued that people needed an entirely independent advocate who could help them stand up for their rights – including against over-protective families. At one level you can’t argue with this, but it set up an unhelpful dynamic, which has been exploited by Government, for example setting up 2 Forums in the wake of Valuing People, one for family carers, and one for people with learning disabilities. The two work together, but the split makes it more difficult to speak with one loud voice

At the same time Government accepted the arguments of the Disabled People’s movement for equal citizenship to be achieved through giving individuals budgetary control. Direct Payments and Individual Budgets were supposed to be a device to further the choice and control of people with learning disabilities – maybe even give them independence from their families. In practice, as Mark Neary’s  blog illustrates so well, they have passed the care manager job over to families. But, as Mark’s blog also illustrates, those families are under surveillance, and, if they appear to be failing to control their son, daughter, brother or sister,  are still in danger of having their relative removed, with precious little say in their destiny. That shocking photo of the young child standing at the gate of the Assessment and Treatment Unit trying to speak with his older brother which trended over Christmas is not so far removed from the treatment of ‘Emily’ a patient in Leavesden Hospital in the 1940s. Emily had a young son – he was the reason she was incarcerated. Emily’s mother pleaded to be permitted to take the boy into Leavesden to see his mother. She was refused – on the grounds that it would not be good for him to know his mother was a ‘mental defective’.

What I have been trying to show here is that animosity to families has a long history. The Laughing Boy Campaign shows that it is still disastrously present. Staff in Slade House did not listen to the family’s concerns about their son’s epilepsy. They kept the family at arms length, and condemned Connor’s mother. He died. This behaviour would not have been out of place in the mid twentieth century. I still do not understand why.