Recently, it was the centenary of women getting the vote in the UK, Emmeline Pankhurst was a British political activist and leader of the British suffragette movement who helped women win the right to vote, who with others in the movement were abused and vilified.
The 1930’s, where society and the media, turned on the disabled, Gypsies and the Jewish Community, blaming them for the ills of society, which lead to the Holocaust.
It is also easy to forget that through Hungerhauser and T4, the disabled were the first victims of the Holocaust.
In the 1950’s and 60’s, Martin Luther King Jr. who was an American Baptist minister and activist, who became the most visible spokesperson and leader in the civil rights movement from 1954 until his death in 1968, challenged segregation, inequality and human rights abuses, although they are still prevalent in the US today.
Nelson Mandela, who was imprisoned for 27 years but who campaigned against Apartheid and following his release in 1990, became President of South Africa in 1994, marking the end of “White Rule” and the end of the rights abuses of that regime, again there has been little real change.
Looking back over the last 100 years, as Jayne Goodrick has said previously “Everything has changed, but nothing has changed”.
We have gone full circle, women are still fighting for equality, society and the media continues to blame the disabled for the ills of today’s world.
The proposed Liberty Protection Safeguard and the new BMA guidance, which may or may not come into force, could be compared to a modern day Hungerhauser or Aktion T4 Programme.
In Death by deliberate dehydration and starvation: Silent echoes of the Hungerhauser, John M Dolan writes:
“During the final days of his life, Oscar Wilde, aware that death was imminent, lost interest in food but drank whenever one of his visitors brought him a bottle. In reply to a friend’s warning that his drinking was self-destructive, Wilde said: “You are qualifying for a doctor. When you can refuse bread to the hungry, and drink to the thirsty, you may apply for your Diploma.”
Wilde was a master of hyperbole. He was, after all, the playwright who assured us that “nothing succeeds like excess” and who is reported to have declared, while sipping champagne on his deathbed: “I am dying as I have lived: beyond my means.” His deathbed quip about the ability to refuse bread to the hungry was a preposterous characterization of the qualifications of a nineteenth-century physician; but, incredibly enough, as our own century draws to a close, we have among us individuals prepared to take seriously Oscar Wilde’s specifications of the requirements for a physician’s diploma.
It is a remarkable circumstance that, in a nation whose wealth and resources are so vast as nearly to defeat the imagination, scholarly conferences, articles in learned journals, and courts ponder the question whether we can be justified in deliberately causing death by withholding food and water.
Dostoevsky remarks that one may judge the degree of civilisation in a society by entering its prisons. He measures a society’s civilisation by gauging the fate it accords some of its most wretched members. In the same spirit, others argue that the correct measure of the degree of justice in a society is the lot it accords its least fortunate citizens. Rawls’s theory of justice holds that a just society is one which, in addition to according each of its citizens the largest amount of political liberty compatible with each enjoying the same liberty, also allocates all other goods that arise from social cooperation (wealth, income, privileges, and so on) in accordance with a scheme designed to maximise the welfare of the least advantaged representative persons. And Christ’s teaching was: “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (6)
The present task is one of casuistry. In the case proposed for analysis, certain family members are asking the officers of a nursing home to stop supplying nourishment and fluids to a relative who resides in the home administered by those officers. The relative in question is an unconscious man who has been diagnosed as being in a “persistent vegetative state.” Thus, we have before us someone wholly defenceless and vulnerable. If any one fits the biblical description, surely Mr. Stevens, the defenceless disabled man whose nutrition may be cut off, counts as “one of the least of [our] brethren.” Our assignment is to state principles that should be applied in the case at hand and to recommend a course of action. The next section of this article articulates three principles that bear on the case and draws the conclusions they dictate. The sections that follow examine some of the details involved in the case and express some reflections on the moral climate of a society in which cases such as the present one are viewed as presenting a serious challenge to moral intelligence.
The thesis defended here is that the central question raised by the case under discussion is whether it is every permissible to arrange deliberately for a disabled person who is not terminally ill to die of thirst and starvation. It is worth recalling that the Phoenicians, who devised the method of execution known as crucifixion, originally employed the technique as a method of killing by deliberate dehydration and starvation.
The earliest ‘cross’ was actually just a vertical stake to which the condemned was tied and left to expire from thirst and starvation.
It is remarkable that physicians and laymen are now seriously contemplating adoption of a method of killing that was regarded as particularly cruel and degrading in the ancient world and was, among the Romans, who inherited the technique from the Phoenicians, “reserved for slaves and the worst of criminals. …”
Antisemitism is still prevalent and the LBGTI and BAME communities are still fighting for equality.
They say history repeats itself, surely a civilised society should learn from history and the mistakes of our forefathers.
My references to the 20th century aren’t meant to offend, rather to illustrate that nothing has changed and the lessons of those times have yet to been learnt.
We get told “you don’t look like you have Dementia” or “that happens to me” etc by the naysayers.
No one chooses to be abused by a system that on diagnosis, sends you home to die, a diagnosis which means that you have to fight and pay for your support (when you can find it) and a system that leaves you depressed and abandoned and subjected to the medical model of healthcare.
A system that stigmatises you following that diagnosis, that leads you to be abused by the medical model of BPSD (Behavioural and Psychological Symptoms of Dementia) and dehumanised with the lack of a rights based approach to you care, which discriminates against a person because of lack of capacity or advancing age.
In “Behaviour Change Ahead” on Saturday, I will refer to behaviours as emotions and BPSD (The Behavioural and Psychological Symptoms of Dementia) as ERD (The Emotional Responses of Dementia) until someone comes up with a better term.
These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.
Resources
Why Dementia Must Be seen as a Disability
LGBTI rights, where do we stand
