THE RIGHT TO QUESTION AND AN OBLIGATION TO JUDGEPOSTED BY LIVESWORTHLIVING ON NOV 1, 2014
In the last few weeks a slew of articles, mainly from the UK Daily Mail stable, have emerged featuring parents advocating the abortion or euthanasia of their children with disabilities.
At opposite ends we have a story from an elderly mother who says that she wished that she aborted Stephen, her 47 year-old son with Downs Syndrome, and at the other tragic end we have the recent story of a younger mother who succeeded in getting a Court to agree to the Ormond Street Hospital in the United Kingdom withholding hydration from her 12 year old daughter who was born blind with hydrocephalus, meningitis and septicaemia.
What binds them together is an avalanche of ferocious commentary in media articles, on blogs and social media.
Much of the public response expresses unconditional sympathy with the parents and a view that this is a closed issue that exists within the family. This is most succinctly summed up in the many comments would say that we have no right to "judge" or even to question the decisions of these parents unless we "walk in their shoes".
While it's a curious point to make about articles in national newspapers, the reality is this is a devastating argument - it effectively takes all debate off the table with the exception presumably of doctors and lawyers sitting a long way away in UK. It validates their actions and leaves no room for discussion.
It also resonates intrinsically with the aversion that so many of us have to judgmental people and ideas in modern times. This is mostly expressed as a healthy skepticism about matters of personal domain, like how we dress, whether we choose to drink alcohol, whether we're promiscuous, whether we're well-educated or the kind of work we do. It resonates with our dislike of the nosy neighbour, the gossip, the wowser, the dobber and the snitch.
Yet there are some personal matters which extend far beyond the home to affect the rights of others which leave us with the right to question and the obligation to judge.
Domestic violence is one such issue.
Euthanasia, violence and murder of vulnerable people with disabilities is another.
We have the right to question the media portrayal of people with disabilities in stories like the piece traducing the life of Stephen Relf.
The reality is that none of us, least of all those exhorting us not to judge, actually know the families at the centre of these events.
What we do know is that these stories are being splashed in the vivid colour across the pages of popular tabloid news outlets like The Daily Mail and being syndicated into many media outlets which influence public opinion on issues which are currently before the Parliament.
We also know that these articles have not featured the voices of people with disabilities themselves, disability rights advocates or anyone outside of the medical profession or family members without a disability connected to the outcome. We've not heard from Nancy. We've not heard from Stephen. That's something we can question.
We know that the same publications have chosen not to highlight the many stories of people with Down's Syndrome who live exciting, worthwhile, productive and joyous lives. We know that they have not delved into the violence, financial physical and emotional abuse, segregation, chemical and physical restraints, barriers nor attitudes which might make families parents and people with disabilities themselves feel like life is not worth living.
We have the right to judge whether dying of thirst is a decent or "humane" way to treat vulnerable people in the 21st century or whether it belongs in the chamber of ghoulish horrors abandoned by western countries at the end of the Inquisition.
We've the right to question why those who would equate the euthanasia of people to the euthanasia of animals cannot see Nancy's death through the same prism of horror as sitting by and watching a dog die of thirst in a locked car on a hot summer's day.
It is necessary to ask how they have arrived at the idea that the life of a person with a disability has less worth than the life of a family pet.
There are judgments coursing through the heart of this - made by courts and judges, both fallible - and we have the right to question how they are being made.
We have the right to ask what criteria should be applied by parents or courts when making a decision to kill a child with a disability. If the criteria is that a person cannot eat or drink independently then we have the right to ask whether that criteria might also apply to someone like Professor Stephen Hawking who has ALS. Is the criteria is a child with a disability experiencing pain, then many of us with disabilities have the right to ask with our parents would've been justified in withholding food and water from us at times when we were in pain due to surgery or illness. If pain is the criteria, then we have the right to ask whether the cause of that pain is important and whether having an undiagnosed tooth ache or stomach ulcer is grounds for euthanasia?
We have the right to question the idea that parents have the innate, intrinsic and inviolable right to make choices for their children and whether that is just because that child has disability.
The idea that parents have absolute rights over the lives of their children with disability is an archaic one which harks back to ancient Rome.
Under the mos maiorum the older male breadwinner of the household, known as a paterfamilias had life and death control over all his family members. Pointedly the mas majorum encompassed disability and the paterfamilias was obliged to put "obviously deformed" infants to death.
The mos majorum concept of supreme authority inside the hierarchy of the family is a deeply arcane idea which runs directly counter to everything we now think about children which owes much to the UN Declaration on the Rights of the Child which holds that children have rights as intrinsic human beings. Even the Romans came to see it as wrong and it was scaled back under the Emperor Hadrian.
Whether we realise it or not most of us would now judge good parenting within the prism of those rights thanks largely to child protection laws and the thoughts of Dr Spock.
We simply do not allow parents a run of open ended unfettered property rights over their own children. Children are no longer "filii familias" - they are people with rights outside of their families.
Most of us would frown on parents who seek to bend the innate characteristics of their own children into shapes of their own choosing. Punishing a left-hand child to become a right-handed child, trying to forcibly reshape your childs gender or sexuality or the bizarre subculture of Beauty pageant parents attempting to relive their lost glories through their children are all parenting practices that most of us would happily leave in bygone times.
We also no longer believe that parents have the right to decide that a girl doesn't need a complete education because they expect her to marry and stay home doing needle work. At the more extreme ends we have rejected completely the idea of child labour or the idea that parents have the right to sell their children for sexual purposes. We feel there is something wrong with religions that deny their children life saving blood transfusions on the basis of the parents religion.
The idea of children as property hales from a dreadful era prior to child protection and the consequences can be seen every day in the hearings of the Royal Commission into institutional responses to child abuse.
And yet somehow children with disability have become the exception to this as we now concede the most serious action of all - the right to kill a child - back to parents. It is as if somehow people with disability have been cast back into antiquity - subject to Pater Familiarius with a touch of the spartan notion of survival of the fittest added to ensure historical verisimilitude. Once again we're left with the idea that people with disabilities are the sole exception to sets of universally agreed frameworks, ideas, laws and conventions which apply to everybody else in the community. This is naked ablism in its raw state.
Most of all we have the right to question because those who advocate euthanasia of people with disabilities are judging us.
They are judging by word and deed our lives to be less relevant, worthwhile, productive and meaningful then their own lives. By saying that Nancy's death was not a murder or killing they are placing a different value on the lives of a whole class of people due to our disabilities. By saying Stephen should have been aborted they are judging people with Downs Syndrome to live banal lives that leave no footprint on the surface of the world.
By comparing the death of a person with a disability by dehydration with putting down a family dog they are making a judgment and weighing the scales of human rights for us lower than the disposal of a pet.
As difficult as these debates are we cannot vacate the field to those who proclaim we have "no right to judge": the German T4 euthanasia program started with a simple letter from a father to a politician telling a relatable human story.
No one judged nor questioned then, and it ended with the deaths of 270,00 people with disabilities.
As we hear such stories again we have the right to question each and every one and an obligation to judge them all in their turn.
Craig Wallace is the convenor of Lives Worth Living