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.

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