A step too far

It’s been a long time since I blogged, well blogged about disability related matters anyhow; about anything important. That’s not because there’s been an absence of  topics to discuss, share or be passionate about, indeed there’s been a multitude of worrying developments waving their unwelcome hands in the distance, both locally and nationally.

The problem though has been two fold; firstly, local changes to services have long been at the “in development” / “still confidential” stage, and, frankly, I’d be putting my job at risk by blogging about them, and secondly, both local and national developments have been, while increasingly unnerving, devoid of any concrete details.

Nothing in that regard has changed. There’s still little in the way of specific details. What has changed and what has dragged me out of my lethargy is the recent coalition “spending review.” When I say “dragged me out of my lethargy” however, I mean “angered beyond words” (well, almost).

This is not, therefore, going to be a blog disguised as an evidence-based report and it’s not going to have vaguely hinted at or clumsily hidden judgements. It is going to be blunt and angry. It may achieve no more than letting that anger out; giving me a brief moment of enraged exhalation.

A small piece of housekeeping before I start; when I use the words; person, people or individual it’s shorthand for somebody with a disability. Right, that’s that done.

What is important to note before I begin, is that the spending review is not solely to blame for this mess. Cuts in many public services were happening anyway, what the spending review has done is add both a severity and a rationale for their supposed necessity. In addition I should state that the cuts are going to hit many people; some young, some old, all with a range of different needs. This blog concentrates on Disability matters, so I’m just concerning myself with how it affects people with disabilities and their families, they will not be the only ones hit hard of course.

A newspaper quotes to start:
“After decades of relentless expansion, the Chancellor has set out plans for nothing less than a dismembering of the welfare system and a rolling back of the bloated public sector, including a staggering £81billion in cuts” (Daily Mail)
Its interesting to explore the language used, although ‘dismembering’ and ‘staggering’ could be seen as negative or even critical (my own, admittedly biased, view of The Mail makes me think they are used due to the writer’s sense of awe and pleasure) the use of ‘relentless’ combined with expansion and ‘bloated public sector’ gives you real sense of where the newspaper stands.

There is a prevalent view, based on small amounts of truth (money spent on welfare and public services has increased) but much more on ideology and politics; that the welfare state is a ‘burden’, that it is financially unsupportable, that it is wasteful and abused, and that it is largely unsustainable.

The public sector has suffered a sustained attack from certain sections of the media since the Coalition come into government; criticism of the wages public sector workers earn (did you know, some of us earn more than private sector ones, how dare we?!), how the cost to “honest, hard-working, taxpayers” ( because public sector workers and people receiving services aren’t those too) has risen to record levels and how the systems are abused. They have, entirely coincidentally I’m sure… preceded government announcements to address just those issues.

This kind of attack takes hold; if you are of an opposite predisposition they are unlikely to persuade you otherwise, however if you have always resented your taxes, resented the benefits people are able to receive or are just worried about money in the current financial crisis, your views will be solidified, your worries will have form and, more importantly; a target.

As far as people with disabilities go, the Great British Public (GBP) has a strange and almost contradictory relationship. They mostly want good things for them; they certainly don’t want them to be mistreated or abused. They’ll give to disability related causes, but they don’t particularly want meaningful ‘contact’ or understanding, they don’t want ‘closeness’

Although disability services have developed and improved, attitudes remain fundamentally unchanged in 50 yrs; the GBP are no more accepting. People with disabilities are ‘funny’; they talk ‘funny’, they have ‘funny’ ways, they’re “not like us”.

They don’t understand, bless them, the GBP, and if they were honest, they don’t really want to; it’s ‘arms-length’ caring. Seeing that girl in a wheelchair on Children in Need, saying “aahhhh, bless” and maybe, just maybe, picking up their phone or pressing the red button is ok. Understanding why she is like she is, accepting that her needs cost money to meet and that it’s right and proper that that money comes from their taxes? A step too far.

Because when they realise how much it costs, and it does cost a lot, they start to lose what little understanding they had and certainly their compassion. That cute looking girl in a wheelchair, smiling in a custom built roundabout, she doesn’t seem so needy does she? She looks happy and pretty easy, cheap, to look after?
Well that’s because the GBP are not seeing her and her parents at 2.0am, when she’s crying in discomfort, when she’s having a 4th seizure and her exhausted parents are alone and distressed. When she’s sat in urine and faeces because there’s not enough pads to change her until morning as, if you’re lucky, you get given 4 for 24hrs, and woe betide anyone who decides to wee or poo more than that. They don’t see her when she’s sat in her wheelchair day after day, week after week, in discomfort and distress because she’s had the temerity to grow and no longer fits it; and the local wheelchair service has a backlog that delays appointments for months.
They don’t see her when she just won’t, she can’t, sleep and her parents never know when this phase will end because, well, it just might not ever end. You’ve had a baby or toddler not sleep, you think you know? You know nothing; they (mainstream kids) 99 times out of 100, grow out of it, this girl may never.

Ask the GBP to truly accept people, not just send some cash once a year when someone amusing on tele asks them to and it’s another step too far. Think she talks funny, that girl in a wheelchair, those exaggerated mouth movements, that stuggle to get out every word? Have you ever mimicked people with cerebral palsy, called someone else a spazz, a spastic? Are they still words you use, or have you heard them used by others, by comedians, by the GBP?

Now trying being that child for one day, have a muscle tone so high (that’s what the word spastic refers to, dear GBP) that you limbs are pulled against your will, your bones are deformed as they grow by the constant pressure of a muscle tone that just never relaxes. Your internal organs are displaced by your deformity; you’re in constant discomfort, pain and anxiety. You can’t pick up objects with any accuracy, and if you do, you can’t release them. You own finger nails will dig into your palms.
The muscle tone that affects your arms and legs affects internal muscles too, so expect problems with opening your bowels, controlling your urine output and keeping down what little food you are able to eat. Because you’ll have problems swallowing too, you’ll aspirate fluid, food and you’re own vomit into your lungs; taking one mouthful is an exercise in concentration, complexity and stress on a par with defusing a bomb.
But ask the GBP to stop laughing, to stop using the word ‘spastic’ as an insult and its political correctness gone mad, and it’s a step too far.

You may feel I’m getting on my high horse about acceptance, but without acceptance and a true, meaningful understanding, these cuts to Disability services will be passively accepted by a GBP that feel there are more important issues to worry about. If you do not understand what someone’s needs are and what the consequences are for them if those needs are unmet, how can you value and protect the money that is required?

Because you see all of those problems can be managed and, to some extent, overcome:

  • Fund things properly and you support her and family to reduce so much of what makes it almost intolerable.
  • Fund meaningful, robust, short breaks services and parents can have a “light at the end of the tunnel” and well-deserved time for themselves and their other family members.
  • Fund continence services properly and pads can be issued in the correct amount to meet the person’s needs, not in an amount the person has to suffer to meet; by sitting in wet or soiled pads, by reducing fluid intakes.
  • Fund wheelchair services properly so appointments and needed changes to chairs can be made ahead of time; predicting development, preventing discomfort.
  • Fund treatment: operations, medications, therapy, sleep systems, mobility aids etc and the physical difficulties they experience can be, at least somewhat, alleviated.

But, and this is the rub, that all costs, and the taxpayer pays, and that’s another step too far.

But it’s not just the GBP that fails to understand disability services; decisions makers who should know better also fail. From government ministers to councillors to senior managers, a failure to appreciate the needs of disabled people, what their services do for them and why they are so important, is endemic.
Prior to the spending review my local council was already charged with saving £40+million; in an area covering approx. 220,000 people. In regard of disability services there are, as an example, threats to close day services for adults; sounds ok doesn’t it, sounds tolerable? They’d only be closing a nice little building where people go and sit and play and chat and work and eat. I mean it’s not proper work, or proper education. I mean they don’t contribute to society and anyway it’s not a hospital is it?
I’ll concede I don’t see the local day services as the pinnacle of excellence; however they’re mostly good and range from ok to brilliant in the options they provide. But people, mainly those who live at home with their parents, enjoy going there; they socialise, they invest emotionally in it and its well, their life; their life away from their family.

Their parents, many of whom are elderly, rely on it as a means of providing their son or daughter with ‘more’, with activities and fun and work, but also, crucially, as respite from their own caring.
Take it away and a shitstorm will happen. Maybe not straight away, but it will. People will get frustrated and depressed, parents will have to give up what little work they can do around their caring and will get poorer. (Benefits, what benefits?) People with complex health conditions and those who are emotionally complex individuals will struggle with the loss of their social outlet, the change in their long-held routine, their new confinement.

Then parents will start to struggle. 24 hrs a day, 7 days a week, 52 weeks a year. No break, no support. One of two things will happen to many. They’ll ‘care’ themselves into, literally, an early grave or they’ll have to, against all their plans, wishes, commitment and devotion “give their son/daughter up.” The guilt, the anguish, the pain for them – the sadness, the loss, the confusion for the person.

That’s the human cost. But if that doesn’t tug at the heartstrings of a morally oblivious government, look at the financial cost. Think you’re saving those poor taxpayers money? Think again. When those parents die, when they reach the end of their ability to cope, where does that person go? Who pays for that person’s new home? Think a luxury day service is expensive, a drain on the taxpayer, and unaffordable extravagance in these days of austerity? Find long term residential places for just 10% of the people who currently use it and that day service will be looking decidedly cheap.

I can’t speak too openly about the service I work in. IF, hypothetically speaking, it was to close, within a year at least 5 families would reach crisis and their child would need long term residential care. The cost of which, at a conservative estimate (probably, for some, much more), would be £100,000 per child, per year. The total for those 5 children would be more than the budget for ‘my’ entire service. Think its expensive now, think it’s something easily removed?

You’re now probably thinking that disability care is expensive, well, news to you, it is. I make no apologies for it, why should I? So is Vodaphone’s tax avoidance, so is bailing out the bankers and not getting it back. I know who deserves it most. The world is huge, complex and expensive, but surely we need to retain our compassion and our protective, human instinct? These are the most vulnerable people in our society bar none, and the question for us as a nation is this: how do we want to be judged as a society? By how we treat the richest, the strongest, the wealthiest? By how small our National Deficit is? Or by how, in spite of the challenges facing us, we support the most in need; how compassionate we are, how giving?

There is this fallacy that the cuts will only affect “non-essential” services, will spare the most needy, well there’s two flaws in that. Firstly, cuts to vulnerable people’s services were happening before the spending review and are now continuing at an ever increasing pace with no moral selection governing what is spared and valued; Local Authorities and NHS Trust are charged with making savings and the axe is falling, and will only continue to fall, on the most needy, the most vulnerable and the least able to shout back. Far from protecting the most vulnerable; it has been those that have been attacked first.
Secondly, the definition of a “non-essential” service is rather vague, open to interpretation and, frankly, to be outright ignored. What appears essential to someone disconnected from those concerned, as I discussed earlier, can be an essential lifeline to those who use it and their families.

Dismantling the welfare state may be an attractive policy for those of a right-leaning inclination, for libertarians, for people who judge the whole of it by a tiny minority who may abuse it, for those well off enough to rarely, if ever need it, for those who look across the pond at America as an appropriate model, for those who see need, weakness and vulnerability as a burden and for those who see an economic dictate designed to balance a budget sheet as more important than the quality of life of those less fortunate than themselves.

This brave new world of health insurance, of enforced labour, of austerity, or budget tightening, of means-testing, of “3 pads a day and no more”, of the strongest survive – may well work for the most wealthy, for those lucky enough through intelligence, birth right or chance. For others born with a disability, for those who parent someone with a disability, for those who, by no fault of their own, are not equipped to survive this brave new world, well there are harsh times ahead.

We are not “in this together”, the most vulnerable will not be protected of that there can be no doubt. The proof of that is already here; the poorest and most needy have been the first and most harshly hit. When that’s been their priority already, how can they be trusted?

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