A-Infos (en) France, UCL AL #362 - Politics - Odile Maurin (Handi-social): "Will the choice to die truly be free?" (ca, de, fr, it, pt, tr)[machine translation]

Odile Maurin is an anti-disability activist within the Handi-social 
association, which she chairs. She was an active participant in the 
Yellow 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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