Liz Carr’s documentary represents the interests of the disabled in the assisted-suicide debate.
Liz Carr’s documentary represents the interests of the disabled in the assisted-suicide debate.
Y ou might recall the movie Me Before You. Liz Carr, an English comedian, actress, and disability-rights campaigner, does. The 2016 film — about a handsome young man who becomes disabled after an accident, falls in love, and then, as with all good rom-coms, goes off to Switzerland to die — caused great offense to people with disabilities and their loved ones.
Carr attended its premiere with other disabled-rights’ activists, where she confronted the cast and crew. She expressed that, for people like her, Me Before You epitomizes the harmful prejudices that many able-bodied people have toward those with disabilities. As Carr puts it: “If a nondisabled person wants to commit suicide, it’s seen as a tragedy. If a disabled person does, it’s a release.”
“If you’re a visibly disabled person, the chances are that at some point a person, often a complete stranger, will have come up to you and said something like, ‘If I was like you, I couldn’t go on. I’d rather be dead.’” This is Carr’s opening monologue in Better Off Dead? a new U.K. documentary, told from the perspective of disabled people “who aren’t religious, but are really afraid” of the prospect of legalized assisted suicide.
Carr’s campaign group, Not Dead Yet, is fighting what feels like an uphill battle to keep the existing British law that treats assisted suicide “as a criminal offense, not a medical treatment.” The stakes are high. Legalizing assisted suicide puts “marginalized lives like mine at risk,” Carr says. “And those risks will be fatal.”
The documentary is certainly timely. The last time the issue was voted on in parliament, 2015, MPs voted overwhelmingly against legalizing assisted suicide. But today, things look different. Over two-thirds of the British public supports legalization for the terminally ill. Britain’s new prime minister, Labour leader Keir Starmer, has said there are “grounds for changing the law,” and he has promised a parliamentary debate and vote. Even Britain’s former conservative prime minister, Rishi Sunak, said he is “not opposed in principle” to legalizing assisted suicide.
For Carr, the issue is personal. She has a rare condition, arthrogryposis multiplex congenita, characterized by joint stiffness and muscle weakness, that has left her in a wheelchair since the age of seven. In one scene we meet her mother. Going through old diary entries, her mother recalls noting that when Carr was twelve years old, she felt hopeless about her condition and “wanted to die.”
Now, as a happy adult with a deep sense of purpose and belonging, many friends (some of whom also have disabilities), a loving family and a partner, as well as a successful career, Carr has no memory of feeling suicidal as a child. Looking back, she thinks it would have been a “frightening moment for me if that was possible.” She asks her mother whether she would ever have agreed to accompany her to Switzerland to die. “No way,” her mother says. “I would never have allowed that.”
We meet Carr’s friend, Baroness Jane Campbell. Campbell has spinal muscular dystrophy and has been fighting for disability rights since the Eighties. Those with disabilities are the “toughest, toughest people out there,” she says. Every day requires problem-solving. Not to mention dealing with the assumptions of others.
Campbell’s husband, Roger, explains a time when he accompanied Jane to the hospital for a routine chest infection. Jane had lost consciousness, and the medical team informed Roger that it was in his wife’s best interests not to be ventilated or resuscitated. “At first, when they say that, you assume they have superior knowledge,” Roger says. Nevertheless, he pushed back. And thank God he did. Later, Roger found out that Jane’s medical problem was simply that she was dehydrated.
Carr does her due diligence, interviewing those with whom she disagrees. For instance, Lord Charles Falconer, a barrister and peer in the House of Lords who campaigns for allowing those who are terminally ill to end their own lives.
“Is this about pain and suffering, or is it about control?” Carr asks him.
“Very often it is about control. It is very, very frequently not about the intensity of pain,” he replies.
Carr worries that the safeguards won’t last, since they have not in other countries. If assisted suicide becomes legal, it would soon be available to not only the terminally ill but also the disabled. In some countries, major loopholes have put even the poor and depressed at risk. But Falconer dismisses these fears. “Once a legislative decides it will be terminally ill only, it still stick at that.”
He adds: “But I could be wrong about that. But I don’t think I am. The line in the sand for me is terminal illness.”
“The thing about sand is that it shifts,” Carr narrates, reading my mind.
Carr travels to Canada, where assisted suicide was initially legal only for the terminally ill but was soon expanded to include those with chronic conditions, while those with psychological disorders will be eligible in 2027. In Canada, both assisted suicide (having a health-care professional help you kill yourself) and euthanasia (having a doctor kill you) were legalized in 2016. Under what is known as Medical Assistance in Dying, or MAID, 1,018 people died the first year it was introduced. But by 2022, the annual figure had shot up to 13,241. Ostensibly, there is a “fast track” available to the terminally ill, who can get approval in 48 hours, while there’s a 90-day wait period for those whose natural death is not foreseeable. But significant loopholes exist.
For instance, Carr interviews Alicia Duncan whose mom, Donna, a psychiatric nurse, had a mental breakdown after a minor car accident. She became paranoid that she’d be killed be a sniper if she left her house. But because of her background, she knew all the right things to say to be put in line for assisted suicide. She began starving herself. She applied for MAID and was placed on the fast track owing to the terminal illness of . . . not eating. Without consulting her doctor, and despite her family’s protestations, she succeeded, with help, in committing suicide; within 48 hours her corpse was transported to a crematorium.
Amir Farsoud, 50, applied for MAID because he could no longer afford rent. Farsoud, who happens to be disabled, made clear in his MAID application that he didn’t want to die because of his disabilities; he just didn’t want to be homeless. His application was approved anyway. After a local news team reported the story, a kind stranger organized crowdfunding for him, helped him secure housing, and saved his life.
“You MAID it,” Carr jokes.
We also meet another of Carr’s opponents in the debate, Dr. Ellen Wiebe. Wiebe uses a wheelchair after heart disease made it difficult for her to walk. Since MAID’s legalization, she has assisted in more than 400 deaths in addition to running an abortion and contraception clinic. She says she sometimes finds people eligible who have been refused by other doctors.
Why do people seek out her death services? “The No. 1 reason is autonomy, control,” she says, echoing Falconer.
When Carr expresses her worry that “giving the option and the right to a group of people puts another group of people at risk,” Wiebe replies, “What you’re saying is that to protect what you consider to be vulnerable people, you are condemning others to unbearable suffering.”
But hang on. I thought “the No. 1 reason” was autonomy?
Speaking about herself, Carr points out she is probably eligible under MAID, though she doesn’t wish to die. Wiebe replies, “Liz, right now you love life, and you want to live. But there’s lots of nasty illnesses you might get.” She cackles.
Leaving Wiebe’s office, Carr whispers to her partner: “Let’s get out of here.” I don’t blame her.
Carr is funny: “Normally I hate this gratuitous shot in assisted-suicide documentaries: a disabled person looking sorrowfully out of the window, looking at the world outside, somber music playing. But I couldn’t resist.”
In another scene, she and her disability-rights friends discuss the absurdity of “killing yourself over who wipes your backside.” Her friend Simone says, “I have to wipe my own bum.” Carr replies, “I almost feel sorry for you.”
But the issues she raises are not funny. For nondisabled people, there are limited circumstances in which they’d qualify for a legal program of assisted suicide. But for the disabled, the prospect hangs over their heads like a Sword of Damocles, waiting to drop.
Euthanizing the disabled, the sick, and the elderly might save the state money, especially in socialized health-care systems like Canada’s. But as Jamie, a young man with a disability, puts it, he has “inherent dignity as a person.” And you can’t put a price on that.