Euthanasia: Handicap in the front line
In France, the presentation of the debate “for or against euthanasia” has slid towards a caricatural confrontation: on the one hand, are the citizens (cf. the infamous “citizens’ convention” which settled the debate); on the other hand, are the medical workers who are recognised as being largely hostile to any lifting of the Hippocratic prohibition and who consider that killing is not a treatment! But what about all those in handicap situations?
Elsewhere, in Great Britain in particular, they are the ones standing up in the front line against euthanasia, as citizens considering themselves to be particularly vulnerable. As is shown by their forcefully named movement: “Not dead yet”. The association whose basic motto is “Resistance” describes itself as “A national group for the defence of the rights of the handicapped which opposes the legalisation of assisted suicide and euthanasia as mortal forms of discrimination.”
The movement echoes the growing denunciation, by certain people suffering from handicap, of “validism”. The choice of the word is intended to stigmatise the world of the able-bodied seeking to impose their claimed “normality” to the extent of excluding those who they consider to be substandard. It must be recognised, as carers well know – that the call for legalising euthanasia stems essentially from those who are able-bodied and in good health, who consider – mainly for others, sometimes for a family member – that it is preferable to die rather than live in a state of dependence.
But what about the opinion of the same people when they themselves become handicapped? After getting over the initial shock and adaptation to their new life, they largely agree – even when death is near – that they no longer see things in the same light. It is the view of others which questions their continued existence. It is crystal clear: the discrimination of the handicapped, their harassment, their exclusion as well as a form of pity which is akin to rejection – not to mention pre-natal euthanasia – are by no means the exclusivity of totalitarian states.
In democracies, euthanasia could become the ultimate means for failing to consider those suffering from handicap as being fully worthy of life. Philippe Pozzo Di Borgo, a tetraplegic whose story inspired the film “The Untouchables”, warned against the risk of doing away with the “different who make one uncomfortable” to the extent of inciting the “able-bodied” to despise their own vulnerability. In the same vein – and that of the “Soulager mais pas tuer (care not kill) movement – Caroline Brandicourt, suffering from a neuro-degenerative disease, in the spring of 2023 travelled the length and breadth of France on a tricycle as a whistleblower: “We live differently, but we can still have a good life “.
In France, it is especially during mediatised euthanasia cases that certain voices are heard to question what the media craze for such and such attempt at euthanasia reveals of the “value” attributed to the life of a dependent person. An association of parents and family members of those suffering from cerebral trauma mobilized following the euthanasia of Vincent Humbert in 2003 to re-state the right to live for the patients concerned and the value of their life.
Although, in December 2008, Lyddie Debaine was sentenced to two years in prison with reprieve after an acquittal by the first Court of Assizes, it was because the associations for the handicapped had in the meantime expressed concern that the deliberate murder of her severely handicapped daughter, could be free of any punishment due to the handicap of the victim. Was her life so unworthy of protection?
In 2014, in the midst of the Lambert case, France Traumatisme Crânien (a national association for the professionals caring for cerebral trauma cases) as well as the Union Nationale des Associations de Familles de Traumatisés crâniens et de Cérébrolésés (national union of the associations for the families of cerebral trauma and cerebral lesion cases) alerted the Council of State. They declared: “Feeding and hydration, as hygiene and comfort care, are in our view, all part of the basic care due to any patient in such a situation of clinical stability” and added ” EVC/EPR patients [pauci relational and neuro-vegetative states] are not at their end of life (…). They are very deeply handicapped patients, and totally dependent”.
In 2017, the association for research into LAS, which covers those suffering from Charcot’s disease and their families had also protested against the mediatisation of the euthanasia in Belgium of author Anne Bert. At the time, the managing director stated she had “received many calls from patients and their families expressing their indignation”. She declared:
“This reflects a negative and final image of the disease whereas the vast majority of sufferers consider neither euthanasia nor suicide, and they are, on the contrary, hopeful in their life, in their fight, they make the most of the present and do everything possible to compensate for their loss of autonomy”.
Alas, according to the saying “a falling tree makes more noise than a growing forest” further praise is afforded to the “courage” of those who “succeed in their exit” by opting for an administered death rather than the courage of those who live their life, in spite of dependence, whilst being accompanied until the end. What does this double standard say for the image of handicap?
The support of the “able-bodied” for the euthanasia of “invalids” in vulnerable situations, also causes anxiety for the families. Especially when the “fragile” would have difficulty in defending themselves.
In 2024, 75 parents of mentally handicapped patients published a column: “We are appealing for an explicit prohibition against the euthanasia and assisted suicide of those suffering from mental handicap”. They all fear that their loved ones will become “victims of medicine aimed at performance where the administration of death will be the supreme (and economical) weapon for the eradication of vulnerability.” What is happening in Canada, where handicap is a criterion for the eligibility for euthanasia, gives substance to that concern. Several handicapped patients have protested against being subjected to sometimes explicit pressures for their submission to MAiD (medical assistance in dying).
Shocked that a hospital director had proposed euthanasia rather than any other treatment, Roger Foley, suffering from cerebral ataxia, vigorously denounced him in a video which went viral:
“I was dehumanised, threatened, attacked and misled, my life was totally devalued, simply because I am suffering from handicap. Greater value is given to the availability of MAiD than to the alternatives which could relieve patients of their unbearable suffering. MAiD is presented to patients as a privileged treatment option rather than a last resort once all other possibilities have been exhausted”.
Since then, several Canadian patients suffering from handicap have unfortunately requested MAiD specifying that it was in desperation, because they could not have access to appropriate support. In 2023 the law intended to blatantly extend the availability of MAiD to those suffering from mental conditions.
Whereas in France the health system is confronting a multiform crisis, the cost of euthanasia compared with life support is reason for concern for those – in the eyes of a good part of public opinion – who lead lives which are not worth living. Surely the happy faces of the paralympic games competitors delivered quite a different message?
