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| Meghan Schrader |
Meghan is a disability activists and a member of the EPC-USA board.
I am commenting on the story of Arnaud Denis, an award-winning French actor and director who died by euthanasia in September, 2026.
Arnaud Denis asserted, “Since I was a child, I have loved the way theatre takes me out of my own time, transports me somewhere else.” As a director, Denis was known for helping young actors reach their potential, and he used his broad cultural knowledge to write, direct and act in plays featuring psychologically complex characters. Denis won multiple prestigious accolades for skills like his plays’ visual elegance and his conceptual approach to classical French theatre.
But after a hernia mesh implant, Denis developed a panoply of enigmatic, debilitating ailments. His most recent diagnosis was myalgic encephalomyelitis/chronic fatigue syndrome. People with ME/CFS have a higher suicide rate.
Denis tried many interventions and initially continued to direct. But an overwhelming combination of symptoms like gastrointestinal dysfunction, muscle weakness, osteopenia, post-exertional malaise, cognitive impairment, sensory sensitivities, hearing and vision loss, impaired mobility, tinnitus and lack of access to pain control halted the directing and acting that Denis called his “reason for living.”
Denis declared that he was “done with medical abuse,” saying: “All the successive layers that make up a man’s dignity have disappeared one after the other. First my professional life, then my social life…Now I have trouble getting to the bathroom…I am in a blind spot of medicine.”
Denis’s social media farewell message referenced the last scene of the 1978 film The Midnight Express, in which the imprisoned protagonist who has survived years of torment finally escapes.
Denis’s disability status does not resolve concerns about “MAiD” functioning as what social theorist Friedrich Engels called Social Murder: “MAiD” being a Hobson’s choice made because of society’s lack of disability services. Denis fits the representative profile of a disabled “MAiD” supporter: impaired, but advantaged enough to avoid some of the MAiD coercion experienced by less privileged disabled people.
But excruciating pain is not a “privilege.”
Denis’s story reminds me of a Canadian woman with ME/CFS I observed supporting “Track 2 MAiD” on X. She had the resources to shield her from some of the “MAiD” coercion experienced by more marginalized disabled people, and I felt angry at her for endangering those people. But then I read her X posts about her pain and yearning for her pre-illness life. And some of my anger ebbed, because I felt so bad for her.
So, how should euthanasia prevention respond to suffering? Much disability rights opposition to assisted suicide is based in the Social Model of Disability-the premise that disabled people’s suffering stems mainly from marginalization. That’s one of the core concepts underlying the predominant disability rights position that while some “MAiD” requests are understandable, society has obligations beyond respecting an isolated individual choice.
But can the Social Model help when marginalization intersects with pain that feels like one’s brain and spinal cord are on fire, leaving one inclined to sleep indefinitely? What if someone is too sick to think a coherent thought? What if that person has substantial evidence that they will always have aching bodies that cannot tolerate a short walk, light or sound?
I never met Denis, so I couldn’t have offered to stand by him and say, “Man, I wish I had a magic wand to heal your excruciation; it’s not fair.” I couldn’t have asked Denis questions like, “What kind of support would feel helpful to you, and what kind would feel threatening or dismissive?” I have different disabilities than Denis did. But I know what it’s like when intractable suffering makes the future seem closed.
One of my most painful experiences was thinking I had found the right medication for the treatment resistant depression that I had had for seventeen years.
At the start of one of my worst episodes I admitted myself to a hospital, hoping to stop my symptoms from becoming debilitating. Four days after starting a new antidepressant, my irritability, insomnia, rumination, numbness, impulsivity and dysphoria lifted. My cognitive difficulties, fatigue, and the squeezing sensation in my chest were gone. I had the same capacities that I had always had before my depression began at age sixteen.
The change was so sweeping that it seemed suspicious to me. I had never had a manic episode, but I asked my medical team if I might be having manic symptoms. My doctors told me that I was experiencing a healthy therapeutic response.
I was so thankful. I couldn’t wait to show my family how much better I was and resume my pre-depression life.
Whatever that experience was, it didn’t last. I had my first discernible manic episode 5 days after I left the hospital, and my illness became precipitously inexorable.
But much like Denis was initially hoping to return to the same version of his theater career, that short reprieve left me hoping that a different treatment would provide similar relief without causing mania.
In a manner similar to the exhaustive list of medical interventions Denis tried, I searched for this new treatment for fifteen months.
But like Denis experienced successive losses that he experienced as unraveling his dignity, I watched my carefully created cadre of accomplishments be dismantled as my condition progressed to psychosis and the protracted tangle of cognitive dysfunction, agitation and delusions became evidence that my mind would be like a computer on a blue screen forever.
I was angry at God, angry at my body…volatile despair was coursing through my psyche.
So despite our different constellations of impairments, I empathize with Arnaud Denis’s disillusionment and willingness to let go of life. Pain can make it impossible to contemplate taking what positive existentialism calls a Leap of Faith-not always religious faith, but a choice to believe in the possibility of a meaningful future, even when one has grounds for despair.
I could not have predicted Denis’s future.
But if I had been trying to use disability peer support to help Denis, one of the things I would have said to encourage him is that my situation became manageable again. That shattering episode shifted my priorities to “smaller” accomplishments than the musicology Ph.D I envisioned at the time. But I have a part time teaching job I love, work with public intellectuals, a nice apartment, advocacy, daily FaceTime visits with my familya, etc.
I cannot prove that Denis would have recovered; I’m arguing that a justified expectation of desolation may not be determinative. Some studies on ME/CFS and hernia implant injuries suggest a potential for improvement and adaptation. I am sure that the doctors who signed off on Denis’s death had expertise to support their prognosis, but Denis knew from his own experience that doctors are human. The despair that led to Denis’s choice was understandable, but were there future possibilities that Denis could not see from where he stood?
Denis founded his own support group for people with hernia implant injuries, but I wonder if it would have helped him to meet many beloved members of the disabled community who survive ongoing pain worsened by a dysfunctional medical system. I know disability studies scholars who cycle between writing award-winning books and grieving catastrophic illnesses that shut down their bodies. I think of disabled director, filmmaker and suicide attempt survivor Dominick Evans, who accommodates their Spinal Muscular Atrophy by conducting a great deal of their career from bed.
But Dominick told me about director, activist and ME/CFS experiencer Jennifer Brea.
Brea said that severe ME/CFS can be “a perfect custom prison,” but she directed a documentary about ME/CFS called Unrest that was shortlisted for Oscar and Academy Awards. Brea co-founded the international ME advocacy organization ME Action, and was honored by the Root in its 2014 Root 100 List of African American leaders.
Brea made her documentary using remote directing and interview technology-remote collaboration with international production crews, an IPad teleprompter, live camera feeds, etc. She used a flexible schedule to accommodate the post-exertional malaise associated with ME/CFS, and she is currently working on directing projects with outlets like HBOMax.
Could Denis have been given opportunities to do similar things? For instance, there’s a French agency called L’Agence Crystal that helps disabled artists work on theatrical and audiovisual productions with home and remote accommodations. Could such an agency have helped Denis become a remote director for table reads and script development workshops? Could Denis have worked with podcast network dramas and radio theater groups that record via remote setups?
If given the right combination of time, pacing, mentoring, vocational chances and disability supports, could Denis have reached a period of relative stability, allowing him to rediscover creative outlets and sources of purpose from his former life—even if those things had to look different now?
I don’t know, but society should empower other disabled people like Denis to take an existentialist Leap of Faith that mitigating suffering doesn’t require “cashing in their chips.” Other disabled people trapped in darkness deserve the opportunity to consider the possibility of a light they cannot see now.
Denis’s understanding of his future made his suicidal ideation explicable. But as Jennifer Brea said in her TED talk: “I don’t know is a beautiful thing. I don’t know is where discovery starts. And if we can do that, if we can approach the great vastness of all we do not know, and then rather than fear uncertainty, maybe we can greet it with a sense of wonder.”
Author Note:
For accounts of severe ME/CFS, its pain, and the possibility of finding joy amid illness, see writer Laura Hillenbrand’s 2003 New Yorker article, “A Sudden Illness,” and Jennifer Brea’s TED talk. For disability studies perspectives on reconciling the Social Model of Disability with pain, ME/CFS resources and suicide-prevention tools, see this collection.
