Thursday, 14 January 2016

Do we have to prove our 'usefulness' in order to be accorded human rights?

“It is one thing to guarantee someone the right to die without suffering or without the use of heroic or extraordinary measures.  It is another thing to require that certain individuals or groups be forcibly destroyed as lives useless to the community - lives not worth living.  The logic in each case is different: in the first, the goal is to provide individual happiness in the final moments of life;in the second, the goal is an economic one - to relieve society of the financial burden of caring for lives considered useless to the community.”

2016 didn’t get off to a good start for those of us who value human life in all its wonderful diversity - or for those approaching the last decades of our lives.  Quite apart from the awful things that humans beings are doing to other human beings in various parts of the world, there are two issues closer to home which make me wonder where we are heading.
We started 2016 no closer to action being taken to reduce the shocking and avoidable early mortality rate amongst people with learning disabilities. Revelations of one NHS Trust’s failure to investigate many ‘unexpected deaths’ has been met by resistance from the Trust concerned; and a response from NHS England, the Care Quality Commission and Monitor which has been criticised as inadequate by Sara Ryan and the #JusticeforLB campaign whose valuable work highlighting this the government has acknowledged
And then on January 1st, Matthew Parris, an influential Times columnist, was interviewed by Baroness Jane Campbell on the Today programme defending an article he had written, which was headed “Some day soon we’ll all accept that useless lives should be ended”.  In an audio clip on the same site he had referred to older and disabled people as “an unproductive overhang” and he returned to this argument in a Times opinion piece written on New Year’s day, arguing “that any ageing society will in time question how much those wanting help should demand of those who must pay for it” (the article is behind a paywall but can be viewed for free here).
Of course, people like Matthew Parris are many steps removed from those whose actions or inactions cause someone else’s early death: the carelessness which results in a young man with learning disabilities drowning in a bath; the lack of attention to an older person in hospital who cannot drink or feed themselves without assistance. But people who have the ear of the public and who use their position to influence opinion, help create such carelessness and lack of attention, the casual devaluing of the lives of others. 
This devaluing comes about when we psychologically distance ourselves from others who we see as ‘not like us’.  It is easy to see how this is happening when people (such as those working at Winterbourne View) behave inhumanely towards people with learning disabilities.  Yet when someone considers the life of a very old and frail person and says to themselves, ‘I would rather die early than be like that’, their seeming sense of identification is in fact false and they too are psychologically distancing themselves. Their judgement about the quality of life of someone else is based on their current experience and judgement, not on that person’s or their future self’s actual experience and judgement.
I know this from personal experience.  If someone had said to me the day before I had my accident 33 years ago that, from tomorrow, you will be permanently paralysed for the rest of your life, I would have replied I would rather be dead. And yet, such a thought never occurred to me once it had happened. This is why, although I hope that - should life really become unbearable in the future I would have control over whether I continue living - I will never make a decision on behalf of my future self.  My future self will have different experiences and judgements from my current self and I don’t think I can know what my decisions will be. 
This is also why the only moral basis on which to support ‘assisted dying’ has to have the decision of the individual at the heart of it.  And why any decision has to be uninfluenced by the kind of social attitudes that Matthew Parris says will and should be created amongst older people - the attitude that it would be ‘selfish’ to continue living.  
The Equality and Human Rights Commission has pointed out that a failure to investigate unexpected deaths “could be a breach of the right to life under the Human Rights Act”. This is a timely reminder that encouraging the premature ending of people’s lives is a breach of a fundamental human right which was passed into international law following the Second World War. The point about human rights is that we have them by virtue of the fact that we are human.  To deny such rights to a particular group is to deny us our humanity. 
And now I need to come clean about the source for the quote at the beginning of this blogpost - at the risk of falling foul of Godwin’s Law.  It comes from a detailed study of the role and practice of doctors involved in the ‘euthanasia’ programme instigated by the Third Reich.  This was the  ‘mercy killing’ of 70,000 older and/or disabled people between 1939 and 1941. The programme was then officially stopped as a result of public protest but continued unofficially until 1945 and probably killed more than 200,000. 
I have never before claimed that current attitudes and treatment of disabled people are reminiscent of what happened during the Second World War.  But when an opinion piece by an influential commentator invokes ‘usefulness’ as a qualification for receiving necessary health and social care services, when disabled people die early as a result of neglect and lack of medical treatment, I do think we are entering very dangerous times.  
While disabled and older people could argue convincingly of the contribution we make and have made to our families and friends, our community and to society generally we should resist making such an argument.  Our human rights are rooted in our common humanity and to attach conditions to such rights is to treat us as less than human.


  1. Godwin is dead Jenny. He kicked up his little liberal legs and shuffled off this mortal coil around about the time US & UK govt embraced torture & wars of aggression. Now in this age of democide, history is not repeating, so much as being rebooted for a younger hipper audience, no camps, no big state solution, but market based atomised final solution. In your own choice of colours!

  2. Oh that's so well put. It good to be reminded that our common humanity is all we need to discuss.