UN Human

Today is the United Nations International Day for people with disabilities. Should we raise a glass or drown ourselves in one?

Last week I was at an event where one of the speakers spoke at length about the McDonald vs Kensington & Chelsea case. This is in the infamous case where the LA changed the woman’s care needs assessment and removed her night time support, insisting she could use incontinence pads instead (she wasn’t incontinent). Speaking to some delegates during the break, it was depressing to hear that this “night time support” arrangement is becoming increasingly commonplace. The Royal Borough set a new bar in cynism and many are following. Often waving the banner for “independence” to justify their decision. We’ve reached a point where many people with disabilities are wrapped up in an independence banner and having to crap and sleep in it.

Following Connor Sparrowhawk’s death at STAT, NHS England commissioned Mazars to carry out a wider review into deaths in Southern Health NHS Foundation Trust facilities. The publication of the report has been delayed repeatedly through the cynical attempts by Sloven to delay the inevitable. The delays convey the message that we’ve known for ages – learning disabled deaths don’t matter because learning disabled lives don’t matter. Who knows whether the report will ever see the light of day. The reputation of the power players is far more important than those bloody nuisances who keep dying.

Last week also saw the news that another Mencap care home has been put in special measures by the CQC. Reading the inspection report it seems clear that Mencap tries to run its homes on the lowest staff numbers it can get away with. Comparing the staff to resident ratios it’s hard to see that the residents can be living anything but barren lives. This also seems to be the modus operandi in many of the much trumpted supported living schemes across the country. Not just the Mencap ones – lots of providers are playing this game. And using the independence banner again to shield their shameful practice.

I find this too bleak for words. Three enormous power players: The Local Authorities, NHS England & the country’s leading charity (“The voice of learning disability “), treating the people it is meant to serve with such contempt. Screwing the disabled to maintain their positions of power.

The message is loud and clear – learning disabled people are not human. The Human Rights Act seldom touches them. Their day to day lives (and deaths) are lived without rights and without humanity. Small pockets fight hard for their rights but the power players trample on those rights.

I was channel hopping last night and came across Tim Piggot Smith narrating a programme about Victorian freak circuses. He concluded with the lines: ” Victorian England needed the three legged people, the elephant men, the bearded ladies to construct its image of itself. It needed to define and display the inhuman in order to define itself. It needed to create the freaks to give itself an identity”. Over 100 years on, isn’t the same thing still happening. The only change is that we’ve become more sophisticated and disingenuous in doing it.

There is a glimmer of hope. There have been a number of court judgments recently that have stepped away from the usual paternalism and recognise the human. I’m thinking of the Mr B case and his refusal to agree to a leg amputation. And this week, the C case, concerning the woman refusing dialysis in order to maintain her “sparkly life”. The press reports of both cases often descend into Freaky, inhuman caricatures but the actual judgments are relentlessly about human beings. The courts are going to places that the power players determinedly deny access to – the human.

It’s a Darned long way from a cause for celebration though.