Odile Maurin is an anti-disability activist within the Handi-social
association, which she chairs. She was an active participant in theYellow Vest movement. She discusses her opposition to the bill on the
right to "assisted dying," which she considers dangerous for people with
disabilities. ---- Legislating on the end of life is not new in France;
can you give us a brief history? ---- The legal framework began in 1999
with the right to pain relief and palliative care. In 2002, the Kouchner
Law established the right to designate a trusted person[1]. In 2005, the
Leonetti Law was the first specific law on end-of-life. It prohibited
unreasonable obstinacy and made it possible to draft advance directives,
which allow patients to express their wishes regarding end-of-life
decisions in the event that they can no longer do so themselves. In
2016, the Claeys-Leonetti Law created new rights for patients and those
nearing the end of their lives: it reaffirmed the importance of
anticipated conditions, strengthened the role of trusted persons, and
allowed patients to request access to deep and continuous sedation until
death.
And what is the background to the current bill?
The demand for the right to die in France is not new; as early as the
late 1970s, Michel Lee Landa published an op-ed in Le Monde demanding
this right.
The 2023 Citizens' Convention on End-of-Life rekindled the debate, which
is gaining momentum. The selection criteria for this convention could
have encouraged the participation of those most affected-people who are
sick and disabled. But they were never truly questioned, as if their
experiences were irrelevant. In 2024, a bill on patient support and
end-of-life care was to be debated in the National Assembly, but the
dissolution disrupted the parliamentary calendar. In January 2025, the
new Prime Minister announced a bill split in two, with palliative care
on one side and end-of-life care on the other. It was adopted in May by
the National Assembly and will be debated in the Senate in October.
Have you always been against euthanasia?
No. I myself was affected by the end of my mother's life, for whom I was
a caregiver. She died in the 1980s after a devastating bout of
Parkinson's disease. She begged me to help her die, but I didn't have
the courage. In response, I became an activist and then joined the
Association for the Right to Die with Dignity (ADMD) in 2015, which
exploited my guilt toward my mother.
I completely changed my mind, firstly, with the triage of patients
during COVID. They selected who to treat and who not to treat based on
the degree of dependence on a third party[2]. I saw that they had
decided to sacrifice the elderly and disabled; it was delusional. Then
there was the death of Alain Cocq, whom I had known for ten years. This
activist was led by the ADMD to commit suicide in Switzerland, and the
association exploited his physical and mental suffering without taking
into account his psychological fragility. Yet he had already backtracked
several times on the end of his life. Rather than helping him live, the
ADMD pushed him to die.
An opposition municipal and metropolitan councilor in Toulouse since
2020 with the political collective For a Popular and Social Ecology
(PEPS), Odile Maurin suffers from a lack of suitable accommodations that
exhausts her to the point of considering resigning. She continues to
fight against ableism and for inclusion.
Odile Maurin
The euthanasia law is presented as a response to a demand, what do you
think?
There is nothing to support this supposed demand. The ADMD operates on
emotional testimonies, and there are no serious studies on the subject.
The right to palliative care has existed since 1999, but it is still not
implemented: 21 departments do not have a palliative care unit[3], and
in 2012, of all the people who could have benefited from it, only 20%
had access[4].
There is a lack of services, resources, and, above all, staff trained in
pain management and deep, continuous sedation. Before proclaiming a new
"freedom," we must first guarantee the existing right to palliative
care. The palliative care law passed by the National Assembly in May
remains insufficient: the budget, which is a ten-year plan, does not
even meet immediate needs[5].
Why do anti-validism groups claim that this is not a social advancement?
What worries us is what has happened in all the other countries that
have legalized euthanasia: there has been a systematic, progressive
broadening of eligibility criteria. The proponents of this law clearly
claim to want to implement a foot-in-the-door strategy[6]: we must
obtain the principle of the right to kill for doctors, and the rest will
happen peacefully.
Society has a perception of us that directly affects our living
conditions. For example, Kamil, a fellow myopath at Handi-social, was
offered deep and continuous sedation until death following the doctor's
difficulty adjusting his ventilator. He resisted and is still alive.
Our living conditions are so precarious that one wonders if the choice
to die will truly be free. It will be much easier to die than to have
access to a dignified life. Poverty and medical abuse are imposed on us.
I struggle, for example, to find caregivers because they are poorly
paid, and they often look for "better" work elsewhere. The waiting lists
for pain relief centers are endless. It's not our illnesses,
pathologies, or disabilities that discourage us from wanting to live,
but the living conditions we are forced to endure and the failure of
social organization to adapt to our needs.
There's been a lot of talk recently about restrictions on long-term
conditions (ALD) or the delisting of medications for the chronically
ill. Do you see a link with this end-of-life law?
The link is ableism. The government is attacking the systems that allow
sick and disabled people to live. They want to restrict long-term
conditions by removing reimbursement for some medications. However, many
treatments are already not reimbursed, and these are heavy expenses for
those affected.
The same goes for the adult disability allowance (AAH) and the
disability compensation benefit (PCH): for years, the conditions for
obtaining these benefits have been tightening, and departments are doing
everything they can to limit them.
We are raised to believe that we are a burden to our loved ones, and the
lack of compensation for our disabilities exhausts them. All of this
creates social pressure to die. You are then given the opportunity to
"depart with dignity" without ever having had the opportunity to live
with dignity. It is an unheard-of violence.
Interview by Antoine (UCL Alsace)
Confirm
[1]The trusted person, designated by the patient, accompanies them
throughout their care. They are consulted as a priority to assert the
patient's wishes if they can no longer express themselves. The new bill
makes this consultation optional.
[2]Florence Aubenas, "Bienvenue en Alsace, à Coronaland," Le Monde,
April 26, 2020.
[3]Victor Mérat, "End of life: which departments lack palliative care
units?" ", Le Figaro, April 26, 2024.
[4]"Report on the public debate concerning the end of life," National
Consultative Ethics Committee (CCNE), October 2014.
[5]"Is the planned increase in the palliative care budget sufficient?",
Collectif-jabs.fr, June 21, 2025.
[6]This strategy was presented by Jean-Louis Touraine, member of the
ADMD honorary committee, in a public conference available on YouTube: Le
Choix - Public conference of 11/30/24.
https://www.unioncommunistelibertaire.org/?Odile-Maurin-Handi-social-Le-choix-de-mourir-sera-t-il-reellement-libre
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