Assisted suicide: it’s about disability
The British documentary Better off Dead, directed by the actress and activist Liz Carr for the BBC in 2024, masterfully raises the stakes of assisted suicide and euthanasia laws.
Liz Carr, the protagonist of the documentary, explains from the outset who the target audiences are for these laws. These are not, or not only, aimed at terminally ill patients but also at disabled people. Intended, in fact, initially for terminally ill patients, the laws on assisted suicide and euthanasia have gradually broadened the eligibility criteria in all the countries where they have been adopted.
In France, in the committee of review by the deputies, these acts were planned for people suffering from a serious and incurable illness in an advanced or terminal phase, in other words, for sick and/or disabled people whose vital prognosis is not engaged in the short or even medium term.
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Agrandissement : Illustration 1
Image description: actress Lizz Carr, in an electric wheelchair, poses in front of a wall where red hearts representing people who died from COVID 19 are stuck).
Disability as a tragedy
The medical or individual model of disability is very strong in France. In this approach, disability is presented as the result of the individual's deficiency, to whom medical interventions will be proposed aimed at his or her healing or rehabilitation in the society of able-bodied people. However, by virtue of its deviation from the able-bodied norm, the disabled body is perceived as a diminished version of the able-bodied body and disabled lives as lives with lesser value.
The British sociologist and disabled activist Mike Oliver[1] theorized the cultural expressions of this medical approach under the model of the personal tragedy of disability. This model is materialized by the production of messages valuing physical capacity and presenting disability as a tragedy that does not allow one to have a fulfilling life.
In Better off dead, Lizz Carr evokes one of the many cultural productions that convey this vision. It is the British-American blockbuster Me Before You by Théa Sharrock, which had triggered criticism from anti-ableist activists all around the world.
The film tells the story of a wealthy banker who became quadriplegic following an accident and who hires a home helper. The latter and the banker fall in love. However, the handsome, rich, in love but disabled young man decides to leave for Switzerland to end his "half-life" and leaves his money to the beautiful, in love, poor but able-bodied young woman so that she can live a full life, without him.
Films, series, broadcasts, and even government communication, contribute to fueling a hegemonic ableist culture that makes disability synonymous with suffering for the individual, for their loved ones, and that presents the disabled individual as a burden on society. Functional limitations - inability to walk, dependence for the essential acts of life - are associated with the loss of dignity. Death thus appears as a liberation, a deliverance, a dignified exit from a life considered unworthy.
The experience of those concerned by illness and disability
This perception of life with a disability is especially that of those who do not experience it. The demand for a law on euthanasia and assisted suicide is also mainly that of a healthy society that wants an escape route from a potential life with a disability, which it sees as a necessarily unhappy life and intrinsically devoid of dignity.
In Liz Carr's documentary, activists from the Not dead Yet collective, all concerned by disability and/or serious and incurable illnesses, oppose this ableist vision of dependency with the philosophy of Independent Living. Rejecting the bill on assisted suicide and euthanasia in Great Britain, they demand, not active assistance in dying, but the means that would allow them to have dignified living conditions in a country where austerity measures have seriously hit the collective of disabled people.
The vision of the Not dead Yet activists is that of most people concerned by disability. As Baroness Jane Campbell recalls in the documentary at the House of Lords, the bill is not supported by any association of people with degenerative diseases.
In France, the End-of-Life Citizens' Convention held in 2022 and which submitted its report in April 2023 was supposed to be representative of the diversity of French society.
However, the selection criteria for the citizens who participated were gender, age, urban area typologies, region of origin, level of education and socio-professional category. Illness and disability were not part of the selection criteria for participants. In other words, the potential immediate beneficiaries of the law did not have a say in this convention.
In addition, among the opponents of the law who were heard, there were a few representatives of various religions, who reject the project for reasons related to their faith, and professionals in the field, mainly geriatricians and palliative care doctors. On the other hand, no anti-ableist collective or association opposed to the project was heard.
Within the Convention, as in the media, the voice of anti-ableist activists is absent. In the eyes of public opinion, only a few conservative reactionaries would oppose a law wrongly perceived as a progressive law.
Is a law needed?
In the British documentary, Professor Katherin Sleeman, a specialist in palliative care, explains the reasons why doctors who work with patients likely to request assisted suicide or euthanasia oppose these acts (palliative care specialists and geriatricians in particular). She explains, first of all, that many people do not have access to palliative care in Great Britain.
The 2023 report on the Claeys-Leonetti law confirms that the French have these same difficulties: "access to palliative care remains unsatisfactory", it concludes. At the end of 2021, twenty-one French departments did not have palliative care units, meaning that two-thirds of patients requiring this care did not have access to it. The report also notes the virtual non-existence of palliative care inestablishments and in residential establishments for disabled or dependent elderly people (EHPAD).
In her professional practice, Katherin Sleeman has also observed that, in the vast majority of cases, the treatments provided in palliative care were sufficient to make pain tolerable.
In France, the report on the end of life once again supports the opinion of the British doctor: "the work of the mission shows that the legal framework established by the Claeys-Leonetti law meets the vast majority of end-of-life situations and that, in most cases, patients no longer ask to die when they are adequately cared for and supported". It also notes that deep sedation, envisaged by the Claeys Leonetti law, is very little used although it helps to relieve patients' suffering.
My body, my choice, my right
Katherin Sleeman states that the arguments that motivate requests for active assistance in dying are based not on suffering but on decision-making autonomy: "it's my body, it's my choice, it's my right", she sums up.
Ellen Wiebe, a doctor interviewed by Liz Carr who has performed more than four hundred euthanasias in Canada, confirms her British colleague's statement. It is less about suffering than about choice, about control.
Similarly, the Association for the Right to Die with Dignity (ADMD), the main French association pro-assisted suicide and euthanasia, writes on its website: "Do you want to control your end of life?".
Although insurmountable pain has been highlighted as the main reason for the adoption of assisted suicide laws, the 2022 Annual Report on Medical Assistance in Dying in Canada also confirms that suffering is not among the main reasons justifying requests for assisted suicide or euthanasia. It confirms, however, that the motivations are related to disability or rather to internalized ableist representations of disability.
Extract from the report:
Different reasons that motivated people to submit a request for medical assistance in dying, by percentage, from the most frequently cited reason to the least frequently cited reason.
Nature of Suffering Percentage
Loss of ability to perform meaningful activities 86.3%
Loss of ability to perform activities of daily living 81.9%
Inadequate control of pain (or worry about it) 59.2%
Loss of dignity 53.1%
Inadequate control of symptoms other than pain (or worry about it) 47.4%
Perceived burden on family, friends or caregivers 35.3%
Loss of control of bodily functions 30.2%
Isolation or loneliness 17.1%
Loss of control/autonomy/independence 4.3%
Emotional distress/existential suffering/fear/anxiety 3.3%
No quality of life/poor quality of life/loss of quality of life 1.8%
Other 0.7%
The choice of some, what price for some others?
One of the questions raised by Professor Sleeman in her conversation with Liz Carr is: what are the consequences for society of granting this choice to a few individuals? What are the risks for what benefits, ultimately?
In a context of growing social inequalities within neoliberal societies, where disabled people are considered a burden on society, a “solution” presented as a “cure” that would save Social Security millions of euros constitutes a real risk for individuals categorized as eligible for assisted suicide. Furthermore, the “unbearable suffering” felt by candidates, which is a necessary condition for granting assistance in dying, may originate from the socio-economic context and not from the illness or disability.
Liz Carr mentions the case of Amir Farsoud in this regard. Unable to pay rent with his social benefits, this disabled man had requested assisted suicide to avoid ending up on the street. His request had been accepted, because he was disabled. The chance of an online kitty launched by a woman sensitive to his distress had finally saved him from a death motivated by his economic situation.
In France too, in addition to ableist representations of disability, an adult disability allowance (AAH) whose amount is below the poverty line, benefits under human assistance below needs, a generalized problem of access to care, problems of access to housing, forced institutionalizations, discrimination and violence of all kinds generate situations of suffering that can hardly be distinguished from those possibly generated by illness or functional limitations.
Safeguards to avoid abuses?
Katherin Sleeman is convinced that the most vulnerable people risk being pushed towards assisted suicide and that no safeguards offer a guarantee against this. Indeed, whether due to the socio-economic context, medical, societal or internalized ableism of those concerned, abuses and coercion have already been observed and amply documented in countries where assisted suicide and euthanasia have been legalized.
Returning to France, the French Society for Palliative Care and Support ( SFAP) considers that during the debates in the Assembly, French parliamentarians have already opened up access to induced death more than the two most permissive countries on assisted dying, Belgium and Canada. How then can we not fear all sorts of abuses here, especially since in addition to all the risks mentioned above, there is the impossibility of universal access to palliative care before the law comes into force?
To this problem raised by Liz Carr in her documentary, Ellen Wiebe, the Canadian doctor who practices euthanasia responds: "To protect those you see as vulnerable, you condemn others to unbearable suffering".
Vulnerable or made vulnerable?
Thus, to relieve a minority in pain and especially to reassure a large majority who, not concerned by it, are afraid of suffering or becoming disabled, we create laws that, in passing, can "mercifully" relieve those who, disabled and sick, suffer from abandonment by public authorities and ableism.
We create laws that establish two categories of people: able-bodied people, who, as Liz Carr points out, benefit from suicide prevention and sick and/or disabled people to whom assisted suicide is offered.
In this regard, a case recently publicized by the Spanish press is edifying.
A twenty-three-year-old with a borderline personality and suicidal thoughts attempted suicide. Following this, she injured her spinal cord and ended up in a wheelchair. The young woman made a request for euthanasia, which was granted. The father then appealed the decision on the grounds that his daughter had mental health problems before becoming disabled.
According to Spanish law, euthanasia is not available to people with mental disorders. However, it is available to people with irreversible physical limitations.
The judge in charge of the case declared herself incompetent, referred the matter to a higher court and, at the same time, decided to temporarily suspend the decision granting euthanasia to the young woman. One of the arguments put forward by the judge to suspend the decision wasthat she had watched a video of the young girl walking on crutches. So, standing, able to walk, she benefited from suicide prevention. In a wheelchair, unable to walk, she was eligible for assisted suicide and had been “elected.”
We are right to be afraid, says Liz Carr in Better off Dead. The existence of these laws puts our lives at risk because our experiences show us that our lives are dispensable.
Avoidable but acceptable deaths.
“We have heard of people with COVID, living in specialized institutions, who had blankets on them that said ‘do not resuscitate,’” she says.
We, the sick, the disabled, rightly or wrongly perceived as unproductive, are not lives worth saving.
Avoidable but acceptable deaths. This is how an internal document from the Perpignan hospital, revealed by Mediapart in March 2020, described the deaths of elderly and multi-pathological patients at a time when hospitals, saturated, were preparing for the epidemic wave.
The protocols to guide doctors in sorting patients who could have access to intensive care were in fact based on the clinical fragility score, which includes criteria relating to functional limitations: mobility, autonomy in the acts of daily living. These criteria were not linked to the chances of survival. In reality, they revealed the conception of quality of life according to the approach of the medical model of disability: an ableist vision that opposes dependence to quality of life. A vision that associates functional autonomy with dignity and dependence with indignity.
As a conclusion the mass death of elderly people in nursing homes in 2020 had not caused much emotion among the population. The death of disabled people in medico-social institutions even less. With COVID, have the floodgates of a eugenicist thought that assumes itself but does not recognize itself been wide open? Or perhaps it is a eugenicist thought that recognizes itself without assuming itself, which would explain the semantic convolutions that we witnessed during the parliamentary debates on the End of Life bill, the aim of which was not to call things by their name: assisted suicide and euthanasia. Some of the proposals even bordered on the ridiculous, in particular that of MP Stéphane Le Normand who proposed to speak of interruption of vital energy.
Whatever name we give to this act, if it were not a question of assisted suicide or euthanasia of the sick and disabled, if there was no underlying eugenicist or ableist thought, if it were only a question of defending an ultimate freedom for all: that of controlling one's death, why would those who defend it not defend it for all, without the criterion of medical condition to be eligible?
A law for all would certainly be less ableist but just as discriminatory in view of the social, economic and political context in which it would be inscribed because, as Elisa Rojas recalled in the interview she gave on the subject to Arrêt sur images: "there is no freedom without equality".
[1] OLIVER, Mike. 1996. Understanding Disability. From Theory to Practice. London, MacMillan Press.