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The Diving Bell and the Butterfly

Jean Dominique Bauby was at the top of his game in the mid-1990s. As editor-in-chief of Elle magazine, he was one of the most respected names in the fashion industry. He was also a father to a son and two daughters and loved to ski and travel. But in 1995, when he was 43 years old, an unforeseen massive stroke took all of that away from him. The incident left him in a coma for 20 days and with a diagnosis of locked-in syndrome, in which the body is almost completely paralyzed but the mind is still sharp. His only means of communication was blinking his left eye. His story is portrayed in the movie The Diving Bell and the Butterfly.

The film traces Bauby’s journey of initially grieving everything he’s lost but eventually discovering his self-worth and what he’s capable of doing despite his difficult circumstances. His speech therapist creates an alphabet for him, arranged according to the letters he uses the most frequently. With the alphabet and his blinking, he learns how to spell out words to communicate with others. He receives family and friends as visitors and has conversations over the phone with them. He spends Father’s Day on the beach with his kids and their mother.

And, he dictates a book about his experiences. The movie title is taken from his memoir, The Diving Bell and the Butterfly. He had a contract with a publishing company to write a female version of The Count of Monte Cristo. But he takes the opportunity to describe his experiences living with locked-in syndrome instead. The diving bell is an old-fashioned deep-sea diving suit which was known to be heavy and often claustrophobic. It represents Bauby being trapped inside his own paralyzed body. The butterfly, which is the human spirit within him, is still very much alive and free.

“I’ve given up self-pity,” Bauby says. “I may no longer have use of my body. But I still have my imagination and my memory.” Throughout the book, Bauby uses those faculties to reflect on his life before and after his stroke and to imagine what he still would like to do if he wasn’t paralyzed. He would eventually pass away in 1997 from pneumonia, two years after his stroke and two days after his book was published. It became a best-seller throughout Europe.

I’m sure many people, upon seeing Bauby’s suffering, would say that his life isn’t worth living. At one point, a friend of his visits and tells him many of his former colleagues now saw him as a vegetable. Ableism is a massive driver behind the euthanasia and assisted suicide movements. According to data from Washington and Oregon, where euthanasia and assisted suicide are legal, the vast majority of the people who opt for it are not experiencing intense physical pain. They’re doing so because they see their lives as having diminished value. Ninety-two percent fear becoming dependent on others, 90% do so due to loss of physical abilities, 79% don’t want the stigma that comes with being disabled, and 41% believe they would be a burden to their loved ones.

This situation creates a false narrative in two ways: first and foremost, that offering an early death to people with disabilities is all about compassion and human dignity. It’s clearly not. It’s more so about pushing the idea that the most dignified thing disabled people can do is die. Secondly, it paints the right-to-life crowd as monsters who want to condemn hurting people to a life of suffering. That’s not what we’re about at all. We’re not against helping people in and of itself; we’re against using death as a way by which people are helped.

To give another example, consider the story of Christopher Reeve. The famous movie actor, best known for playing Superman, became a quadriplegic after a horseback riding accident. Soon afterward, he seriously entertained the idea of assisted suicide because he thought his condition would be too much for his family to handle. But after discussing it with his family and receiving assurance of their unconditional love for him, he decided against it. He ultimately spent the last seven years of his life advocating against systemic discrimination toward people with disabilities. He supported bills against insurance caps that would limit health coverage for those most in need of it. He supported stem cell research that would help find cures for people with neurological disorders. He advocated for more inclusive work environments for people with disabilities. He started his own foundation to help people with spinal cord injuries have a better quality of life.

It’s interesting that Reeve became an even bigger hero in real life after his days of playing one on the silver screen were over. Who knows what the world would have lost if he didn’t stick around after his injury, or how many people’s lives were improved because of his advocacy work? Furthermore, why aren’t we continuing Reeve’s work instead of legalizing euthanasia? His life had value simply because he was a human being. So did Jean Dominique Bauby, and he proved it without being able to speak a single word.

At one point in the movie version of The Diving Bell and the Butterfly, Jean Dominique Bauby’s friend Roussin comes to visit him in the hospital. Years before, Bauby had let him take the last seat on a flight to Hong Kong because he desperately needed to get to a business meeting. That plane ended up getting hijacked by a terrorist group and was rerouted to Lebanon. Roussin tells Bauby his harrowing story of being held there in captivity for four years. He was locked into a dark basement in solitary confinement where it was difficult to move, let alone breathe. But he survived and ultimately was released. He tells Bauby how he found the will to live. “Figure out what makes you human, hold onto it, and you’ll make it,” he said.

Initially, Bauby scoffs at his friend in his mind. How could he truly live when he couldn’t even move his body? But through sharing his story, he discovered the true value and meaning of his life despite losing total control over it. His life mattered. Christopher Reeve’s life mattered. Every single person’s life matters. Is the right-to-die crowd listening?


Disclaimer: The views presented in the Rehumanize Blog do not necessarily represent the views of all members, contributors, or donors. We exist to present a forum for discussion within the Consistent Life Ethic, to promote discourse and present an opportunity for peer review and dialogue.

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