How we still let our learning disabled down
A couple of weeks ago there was a documentary on BBC1 that exposed how, in the 50s and 60s, young Black children were routinely sent to schools for the “educationally sub-normal” because of the prejudices of their white teachers, backed up by misleading results from spurious intelligence tests that took no account of differences in language. This followed a dramatised version of the story, Small Axe: Education, directed by Steve McQueen, in which a boy is identified as ‘sub-normal’ and consigned to a ‘special’ school miles away which turns out to be nothing more than a holding pen, something his parents are only alerted to by a group of diligent undercover Black social workers. In one cringe-making scene, the pupils are subjected to an extended rendition of “House of the Rising Sun” played on an out-of-tune plywood guitar by a teacher who was clearly bored and had no idea of how to educate the children in his care. That quite able Black children were consigned to this regime for specious reasons is one aspect of the scandal; the other is that children with genuine learning difficulties or disabilities were dumped in places that made no attempt to educate them to their potential. This problem did not end with those schools.
Today it’s the tenth anniversary of a documentary that exposed cruelty at a British institution for people with learning disabilities, Winterbourne View. The institution was on an industrial estate near Bristol and was owned by a company called Castlebeck that owned a number of other hospital units and care homes. The abuse consisted of sustained violent cruelty and the victims were people with learning disabilities who had been hospitalised during crises, in at least one case with an obvious medical cause. The institution was closed down and some victims were rehoused in the community, but others were decanted to other hospitals and the young woman shown being subjected to sustained abuse then suffered several years in other units, some of them miles from home where her parents could not visit her. Over the following few years there were a series of other scandals, including deaths from provable negligence such as that of Connor Sparrowhawk and from equally obvious but less legally provable incompetence and cruelty such as Stephanie Bincliffe, before another undercover documentary exposed similar cruelty at another hospital, Whorlton Hall in County Durham, whose male staff threatened, tortured, provoked, and restrained patients and called the institution itself a “house of mongs”. That institution, run at the time by Cygnet, has also since closed, but failings continue in many other places.
While personal cruelty has been observed in a number of units, cruel regimes are an even more common problem. People institutionalised because of learning disabilities and particularly autism are routinely housed in locked units, can be transferred to a secure unit at the whim of the responsible clinician and can be sectioned at the whim of two such clinicians after having agreed to being admitted (which may mean cajoled or threatened into allowing the admission). These places are prisons in all but name; people detained under MHA Section 3 because of their mental health are housed alongside people detained under hospital orders following conviction for a crime, inmates are commonly denied access to fresh air, have personal possessions removed, are denied access to common things on the grounds that they have ever been used for self-harm regardless of an individual’s needs or recent history, and are subjected to indignities such as rationing of toilet paper and denial of period protection. From talking to parents and some former patients, it appears that people are being subjected to this regime simply because they need treatment unavailable in an ‘acute’ hospital or assessment and treatment unit and no other medium-term inpatient care exists. The victims are people with both genuine mental health difficulties and those with learning disabilities in crisis.
An important aspect of why people with learning disabilities, autism in particular, receive such appalling treatment must be the lack of professionalism in their care at every level. Institutions recruit staff with apparent disregard to whether they know how to care for someone with potentially difficult behaviour without provoking them, without triggering their anxieties, without resorting to cruelty; they must know that they are required to serve those they are caring for by such tasks as getting food or drink when they want it, as they would do for themselves at home. Of course, nurses undertake a degree course, but ‘mere’ care assistants are not regarded as professionals but as people doing a lowly job, often for minimum wage or slightly more. The upshot is that staff turnover is high, even of good staff, because people find better-paid jobs, but also that there is neither opportunity nor motivation for professional development. Besides the actual ‘professionals’ such as doctors and nurses, who all need training in autism if they are to work with people with learning disabilities, care workers and human resources staff must receive training on this as well (I do not mean an hour here or there). Both health trusts and private organisations which care for people with autism and learning disabilities must invest in improving the quality of their staff so there is no question of paying peanuts and accepting monkeys, or the treatment of patients as less than animals.
This problem is not new. The guy strumming the guitar in the Steve McQueen film would not have had any kind of training. I witnessed it when I was a pupil at a boarding school, ostensibly for boys with high academic ability with what is now called challenging behaviour, in Suffolk from 1989 to 1993: care staff in particular seem to have been recruited on the grapevine with no regard to their care skills or what they thought of or how they would treat the boys they were supposed to care for. The most egregious case was a man called Bill Sutton, who arrived in January 1990 and never said a kind or friendly word to any pupil (though he would chat with other staff as if they were actually people). He began assaulting pupils on his first night there, would throw boys around rooms and would startle anyone he saw daydreaming in prep by sneaking up on them and bellowing “WORK, BOY!” in their face. His tyranny was brought to an end when a year 9 boy punched him “where his beer had been” and he was hospitalised with a suspected heart attack. How could anyone be such a poor judge of character as to take on someone like this in a caring role? Yet thirty years later, the same problem appears again and again, the same type of people being taken on in caring roles, including in locked institutions where people are supposed to receive treatment in a crisis.
And, as writers such as Ian Birrell have pointed out again and again, it’s not that money is not being spent; rather, good money is being thrown after bad. Public money is being thrown at corporations and bloated charities like St Andrew’s that set up glossy but soulless units rather than rebuilding local inpatient provision. Good units such as West End in Hull are shut down for no good reason, buildings are sold off as prime real estate when they could be modernised and repurposed, while people who need specialist care or treatment are forced into these corporate units, often many miles from where they live. We must get back to having local, NHS-run inpatient mental health provision where people have access to their families and are not subject to oppressive, unnecessary rules or strictures, and we must invest in improving the quality of the staff and delivering serious and intensive training so that people who work with those with learning disabilities in crisis know what they are doing. Lastly, of course people with learning disabilities should live in homes (preferably their own), not hospitals, and we must provide the support necessary, but a hospital admission should not be a prison sentence, much less a death sentence.
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