The mark of a civilised society

I made myself watch tonight’s utterly shocking BBC Panorama programme which uncovered horrific abuse at an institution for adults with complex learning disabilities.  I say institution, because that is exactly what the care unit was.  Locked doors, time spent almost exclusively inside, no activities or stimulation, unqualified staff and worst of all, staff who took a sadistic pleasure in taunting, abusing, assaulting and torturing the poor individuals who had the misfortune to be placed there.  There was precious little care or support for the most vulnerable individuals and absolutely nothing that resembled an ordinary life or assistance to live an independent life.  The abuse meted out to residents was stunning in its brutality.

It would be easy to shrug complacently and assure ourselves that it couldn’t possibly happen here, in Scotland, but we would be wrong to do so.  One of the reasons the abuse continued for so long is because everyone – including the Care Commission – ignored a whistle-blower.  In recent weeks, there have been cases of neglect in care provision in Scotland coming to the media’s attention.

But there are other reasons to be worried.  Just as elsewhere on these islands, disabled people and their families are facing an unprecedented onslaught, a kind of free-for-all with no support, no provision, no right too precious to be considered untouchable.

We are back in the realm of scything hidden services, the ones that most people do not even know exist, yet are a lifeline for disabled people and their families.  We are back to knowing the cost of everything and the value of nothing.

How else to explain proposals to charge disabled people – who are more likely to be poor than non-disabled people – for parking in council car parks?  Or to charge families for school transport – a right given free to non-disabled children if they live a certain distance from school?  Or to remove classroom assistants from schools making it much more difficult for disabled children to get the support they need to succeed (or even just get by) at school?

Having been moved – rightly – out of institutions and care homes, into supported accommodation, living independently in the community, with support, many disabled adults now find that support cut to the minimum.  They will get help to get up, get washed and dressed and with the reverse procedure in the evening.  For the rest of the time, they are on their own, effectively prisoners in their own homes or totally dependent on family and friends to get out and about.

Increasingly, local authorities are attempting to narrow the scope of their obligation to disabled children and adults, becoming ever more inventive at how to categorise and assess people so they fall outwith the criteria for actually requiring help and support.  And only the other week, Scottish housing associations celebrated a policy U-turn which means they no longer have to pay the first thousand pounds towards any aid or adaptation.

Children – still, despite a Scottish Government strategy and increased resources – forced to spend months, years sometimes in wheelchairs they have outgrown;  adults going without occupational therapy that helps them stay well;  families finding their short breaks reduced, stretching them to breaking point;  over-loaded social workers eking out assessment processes in order to disguise inadequate budgets.

The fact is that many more children and adults are living longer with more complex support needs than ever before, and there is a lack of planning or resourcing for the future.  Consequently, agencies try to pass the buck of the cost while people go without.  Moreover, we do not know how best to support people whose behaviour challenges the norms:  as a society, we can cope, just, when they are children but are at a loss to know how to support them as their needs – emotional and physical – become more complex.  This bit of the demographic deficit rarely gets discussed.

And then we have the UK Government ring wraiths, circling overhead with their welfare reforms, breathing lies and innuendo into the media mouthpieces, generating headline stories about people pretending to be disabled, defrauding the state with their fake illnesses and conditions, insisting that people are fit to work, redefining who deserves our support and who does not.  All of it designed to dehumanise, to stop us seeing the worth and value of disabled people in our society and instead, weigh up only what they and their families cost us.  The indignities being visited upon families with disabled children and disabled adults as they are made to jump through more hoops, to prove their entitlement to basic support and income, simply to get by, never mind get on, increase daily.  And are not something the rest of us, the differently abled, would ever tolerate.

Far from being the exception, stories of abuse and neglect by workers paid to care and support, of hate crime and low level harassment by neighbours and strangers, of squabbles and spats over access to precious resources, will grow.  Expect more Panoramas.  Expect more isolation, more injustice, more poverty.

If how we treat the most vulnerable is indeed the mark of a civilised society, then potentially we are in big trouble.  Not just there, but here.

9 thoughts on “The mark of a civilised society

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  3. I couldn’t bring myself to watch the 1 minute-odd BBC News clip, never mind the programme. The thought of “what happens when I/we die?” to your child takes on a whole new dimension if you are the parent of a disabled child.

    Look forward to “process”, “procedure”, “checks” and (no doubt later) “balances”. It’s about attitude, it’s about invisibility and fundamentally it’s about reinforcing a mindset that basically says “You are a lower form of life”.

    From the little I saw of the clip I can figure out who’s the lower form of human life and it’s not the poor bloke I saw stimming (just like my child does when he’s distressed).

    For an interesting Legal (and thoughtful) viewpoint: http://www.pbs.plymouth.ac.uk/solon/journal/vol.1%20issue1%202011/Wright.pdf

    Go to the end: “Conclusion: Disability as Deviance?”

    One problematic area is where a parent of a disabled child or adult kills that child, and raises as their defence to a charge of murder the intolerable burden of caring for the child, or their fear for the child‟s future. Homicide cases of this type have arisen in many jurisdictions, including the UK, Canada, Australia and New Zealand. The outcomes and how they are reached are various: in the UK and Australia, the defence of diminished responsibility has had some success. That defence is not available in New Zealand, but provocation has been successfully argued. An attempt to argue that killing was necessary, being the lesser evil, failed in Canada. However, what all these cases have in common is the presentation to the court of a life of unremitting misery. Phillip French and Rosemary Kayess comment that there seems to be a „latent belief that the “burden” and “suffering” caused by a child with disability ipso facto diminishes the culpability of parents for that child‟s murder.‟

    and

    There are some people with disabilities who are not able to support themselves financially, and others face significant barriers to doing so: the attitude of Blunkett and others who emphasise the conditionality of state support implies that they are therefore something less than a citizen. This is not far removed from the classification of the dependent as deviant, especially in a political climate where the assumption is that recipients of state benefits are likely to be fraudsters or „scroungers.‟

    It is this emphasis on economic contribution that still influences attitudes towards disability, probably combined with occasional reactions of disgust at the disabled body. Barnes and Mercer comment, Disabled people are viewed as „unfortunate‟ because they are unable to enjoy the social and material benefits of contemporary society. These include the opportunity for marriage, parenthood and everyday social interaction. The few exceptions are lauded for their “exceptional courage”, but this simply confirms the „tragic‟ plight of the vast majority.

    The perception of disabled people as „useless‟ flows from their lack of engagement in mainstream economic activities. As a consequence of their failure to conform to „normality‟, whether in appearance or in control over their minds and bodies, they are set apart as „different‟. That difference is still a major factor in decision making about whether to become a parent of a child with a disability such as Down Syndrome. The decision can now be made before the child is born, but many of those making this choice base it on the perception that a life with Down Syndrome is unlikely to be a valuable or fulfilling life, or on the perception that the sacrifice required from the family bringing the child up is too great. The more things change, the more they stay the same.

    • I agree sadly Laughing Spam Fritter – and precious little spam to laugh about here. We are going backwards, not forwards.

      I am still perturbed by what went on in that programme and is going on all around us. Doing nothing is not an option. Shame the big coalition set up to tackle it all seems to have lost its voice huh?

      This is a great article – thanks for sharing the link. And also for sharing your thoughts. The what if scenario is a terrifying one I know for many parents of disabled children

  4. That’s why I was very careful to use the word “some”. There are of course people who will never be able to work and they must be protected and looked after. They should not be hassled with medical assessments and the like. I don’t disagree in principle with a medical assessment, but it should take note that many people won’t be able to sustain a regular working pattern because of the nature of their condition.

    There are some people, though, who could work given the right support. What the medical test in its current form does is to tell people they have to work and not give them sufficient, or any, help to get there, cuts their benefits and sends them into a job market which may well not have anything for them because they’ve been out of it for so long. That’s cruel.

    I’ve been fairly open that I’m not happy about many of the changes to welfare that the coalition is making. Mike, Danny and the others haven’t changed their opinions, but they can’t deliver everything they would like when the political will in the House of Commons is against them. In Government they are fighting and winning battles – on housing benefit for example. I’d like to see them deliver more and stop the cuts to DLA and ESA and introduce a more realistic medical assessment which looks at the person and helps them in a non threatening way and I am sure that that’s what they will want to do. I do know, though, that a Tory Government with a majority would be a lot worse.

    Even so, what’s happening is way bad enough and people are suffering. I think it’s important to get lots of evidence about the ways the system fails people, and present it to MPs and parliamentary committees. The same with Council and Holyrood run services too. We have zero chance of changing anything without calm, rational, persistent, tenacious argument. There’s also a lot of misinformation and scaremongering out there which isn’t helping anybody and in fact harms our case. Everyone who does care about these issues needs to work together to try and change things.

    • I agree Caron but largely disabled people are on their own in this – doughty fechters that they are, they are well capable of raising a campaign on this. But they have not got the energy or resources to fight on multiple fronts = many are staving off cuts to their own services and to their incomes and coping withthat without running national campaigns.

      It is what makes it easy for Government and councils to target them for cuts….

      I would have expected the likes of SCoWR the campaign on welfare reform to be leading on this.

  5. I only saw the pictures because I was on the phone, and that was enough.

    We’d like to think it was an isolated example, but someone I know recently left nursing because of the culture on her care of the elderly placement. There was no place there for any sort of compassion.

    There are many fantastic nurses looking after our vulnerable people, but there are areas of concern. Call Kaye yesterday had an example of a woman with Dementia who was admitted to hospital for a mobility issue, was immediately put on sedatives and who within weeks was close to death. She survived and is fine now she’s at home in her husband’s care, but it was horrible to think of that sort of thing happening.

    You will never find me standing up for the sort of horrible stuff David Cameron has been saying about people on disability benefits, nor will you ever find me standing up for the work capability assessment in its current form. For me the liberal approach is enabling people to regain their health. I don’t think it’s right to leave people on benefits and not do anything else for them to help them recover as has been the pattern forever. And there are some people who are on incapacity benefits who would be better off in themselves if they worked. The difficulty is the rules are so tight and don’t take fluctuating conditions in to account – and the assessment which seems to be geared towards saving the government money and has nothing to do with the person under assessment.

    Unfortunately, the attitude of both the Conservative and Labour parties, who make up the overwhelming majority of the House of Commons, is to continue with this sort of poisonous approach to people who desperately need state help.

    • With respect Caron people don’t get better from disability – brain injury, cerebral palsy, autism, learning disability are all lifelong conditions that no amount of medicine or nursing care can heal. And that is a fundamental problem for our society – that the medical model of disability still persists and that we find it very difficult to accept and value difference. Some people will never work and nor should they be made to, we should be happy to support them and their families because that is what a civilised society does. And value the huge contribution they make to our society and communities in other ways.

      The Lib Dems, sadly, are complicit in what is going on at Westminster – if they are tempering the language, the pejoraration etc then I’ve yet to see it. And I find that very difficult to understand, given the positive dealings I’ve had over the years with Danny Alexander, Michael Moore and especially Archie Kirkwood on disabled people and their rights.

  6. Is the whistle blower still in a job or on his way to jail, can you point to any whistle blower who is not in one of thoses positions, another example of weak legislation which is better ignored unless your prepared to risk and lose everything by law or collusion.

    Arrests made about care home, however media opportunism mean, a prosecution will be more difficult because of a right to a fair trial by those arrested, and evidence been presented to the nation before the police or a prosecutor. I think the perpetrators will walk.

    My reality party (members it appears to be one) the difficulties of families and individuals, dealing with disability, and the advantage taken of them, and neglect of them, is definitely not unique to this UK Government term, any ones who thinks otherwise has a selective memory.

    Inspection is not a paper exercise, and why any inspection would be announced, in today’s world, is beyond my comprehension and goes to establishment protection, not public protection.

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