Not quite Independence Day

Last week I read about two separate distressing incidents that underline the need for support for people with disabilities to remain living with their families if that is at all possible. The first happened in Ireland a month ago, but I only read about it on a feminist blog last Tuesday: a father of three disabled children, two of them autistic, was given a suspended sentence when convicted of the rape of his then 14-year-old sister-in-law in the mid-1980s, because the judge believed that sending him to jail would cause intolerable hardship for his family, his wife in particular. The second was a tragedy that happened very suddenly last Thursday: a young man with autism and epilepsy died in the bath in an NHS-run psychiatric unit for people with learning disabilities in the Oxford area, as reported by his mother on her blog. That story has yet to be picked up by the press but has been reported on social media. Neither the man nor the unit have as yet been identified.

I picked up the first story on the feminist blog run by Louise Pennington, and she did not mention the fact that the incident happened in Ireland, which is relevant as it is a different country with a different welfare and judicial system to the UK’s. She originally posted about it on “Everyday Victim Blaming”. The judge’s reasoning was not only that the man’s imprisonment would impose intolerable strain on the mother (the behaviour and progress of one of the autistic children was reported to have deteriorated considerably while his father was on remand, putting considerable strain on the mohter) but that the rapist had “self-rehabilitated” and proven himself an “effective parent” by such things as working 12-hour shifts back to back with his wife to provide comforts for the children. Pennington insisted that a rapist could never be an effective parent and that there was always the possibility that he could have raped someone else.

The judge obviously had to make a very difficult decision, because while sending a known rapist back to look after three disabled children is not something anyone would want, it was not in the judge’s power to guarantee the care of the man’s three children and do justice for the woman he raped as a child. If that happened in the UK, it’s likely that this conviction might move social services to exclude him from the family home anyway, making the decision to imprison him that much easier, and serious sex offenders have been imprisoned in this country regardless of their caring responsibilities (the London “night stalker”, Delroy Grant, was jailed for life in 2011 despite being a carer for his disabled wife). But that may or may not be the case in Ireland, where other perverse judgements have recently been given in rape cases (e.g. the wealthy rapist told to pay his victim compensation rather than go to jail). It’s hard to disagree with Pennington’s opinion that:

These are precisely the reasons why we need a real social welfare state. The three children, and their mother, should be receiving extra support from the state in terms of money and care-workers. They should not be dependent on a child rapist for support.

The news of the death of the young autistic man (identified only as Laughing Boy or LB) near Oxford came very suddenly this past Thursday; I had been following his progress on his mother’s blog since Mark Neary posted a link to it on the Facebook group he runs. He was admitted to the unit in March after a series of violent meltdowns at home and school and while out on visits (more details here); as his mother Sara put it, “hearing that the town trip … was cut short through agitation it was obvious that LB was moving into a space that was becoming increasingly small. And pretty much unworkable. It was time to act”. For the first month he was sectioned; since then, he had been enjoying trips out with both his family and the unit’s staff, and that day he was due to be going on a trip to the Oxford Bus Company. Sara had been dissatisfied that they had not pushed him to do things other than sit around and watch DVDs and allowed him to block their visits, but was not desperate to get him out of there at all costs. His mother’s more recent blogs before his death noted that he was asking repeatedly when he was coming home and getting upset when he realised it was time to go back to the unit, but there simply was not the support in place to make sure he could live at home:

Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.

Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.

Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.

I have heard of other cases of people with learning disabilities and epilepsy drowning in the bath, including in care homes, and Googled the phrase “epilepsy drowning bath” expecting to find reports on some of them. Most of the reports were, however, about otherwise unimpaired people with epilepsy, often adults who were married with children. One lady in her 50s was taking her first unsupervised bath in years, months after her last seizure, believing her condition was under control following a change of medication. Her husband, who later said they had done everything together while her epilepsy was severe, said he had only left her for a few minutes and came back to find her under water. There are many other cases of people drowning because of a seizure which was the first in several years.

LB’s mother wrote that she never left LB in the bath alone; they would hover, listen and check “as would every parent with epilepsy in the mix”. The standard medical advice to people with epilepsy is to bath with someone present, or take showers, to use a thermostat and run the water shallow. LB’s seizures were very much current: Sara posted on 21st May that he had had a seizure and bit his tongue, so there is no question that this is someone whose epilepsy was thought to have been under control or in the past. There was no excuse for him to be allowed to take a bath unsupervised. Sara noted the irony that “a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath”, and other mental health units are hugely strict about security (as seen in a recent BBC Three documentary series, mental health units regularly turn over patients’ rooms looking for improvised weapons, mobile phones, recording equipment and other “contraband”, a sample list of which can be found at the website of one of Southern Health’s own adolescent secure units, Bluebird House) so a patient with epilepsy drowning in the bath while the staff’s backs were turned strongly suggests negligence in a very obviously dangerous situation.

Exactly what happened in LB’s last minutes, and how long he was left unsupervised (and such details as how far away the member of staff who was meant to be supervising him was from him) are not known to me. Someone I knew died suddenly of a different chronic condition six years ago and it can just happen that quickly (although in that case, his condition was thought to be nowhere near as severe as LB’s, he had no other impairments and was not in a supposedly well-supervised hospital environment). Things like this have happened at people’s homes, but it’s a lot less likely when the person supervising them is a close family member, who the disabled person may be not too averse to let see them in the bath, rather than a stranger doing it for a (likely not very well paid) job who also may be distracted by four or five other people with learning disabilities and challenging behaviour.

LB should not, by that time, have been in the unit at all: he had a home, and a family that was willing to take him back into it, and could have been there if the support had been in place, the lack of which seems to have been the usual mix of lack of funding and slow-moving bureaucracy, the same combination which has trapped many other disabled children and adults unhappily in ‘homes’ and hospitals. The NHS provides facilities like the one LB died in; it’s local authorities who provide the home support, and this is the sort of care that is sacrificed when cuts are made for the sake of “deficit reduction” and “cutting waste and bureaucracy”. It’s not really the bureaucrats that bleed when cuts are made; it’s the most vulnerable, such as children in care and disabled people. We can’t do away with units like that one, but we can make sure that people don’t stay longer in them than is absolutely necessary, as institutional care is not a substitute for a willing and able family.

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