“She gets very down and often says she wants to die rather than carry on, as she can’t see any good in the future.”
This is a journal entry made by English actress Liz Carr’s mother when Carr was 12 years old. Carr was 7 when she was diagnosed with a rare autoimmune disease. Describing her childhood self as “popular” and “fit,” Carr recounts how the illness progressively stole these aspects of her identity from her. By the time she was 11, she was in a wheelchair.
Although 12-year-old Liz couldn’t see it then, there was much good in her future. Despite being told by a doctor in her early teens that “she wouldn’t live to be old,” Carr, now 52, studied law in college to learn to advocate for disabled people. In her 30s, she turned to acting, most notably in the BBC series “Silent Witnesses.” She’s also landed roles in internationally popular TV shows like The Witcher and Good Omens, and won an award in 2022 for her theater work.
Carr’s life demonstrates that life can contain tragedies without being tragic. In fact, her successes may be partly due to these circumstances she would hardly have chosen for herself — and which some may have considered insurmountable.
Throughout these successes, Carr has continued her advocacy for the disabled, most recently in opposing assisted dying. Last Friday, the U.K. Parliament voted to legalize assisted dying for terminally ill patients. Carr is not terminally ill, but she fears this vote takes her country in the wrong direction. Her own experiences have taught her that such laws unfairly funnel lives too often deemed less worthy — lives like hers — toward premature death.
“What if assisted suicide had been available then?” Carr wondered after hearing her mother’s journal entry about her life at age 12. If celebrities and lobbyists were then championing assisted dying as a way to spare others the burdens of caring for the sick or disabled, who’s to say that a younger, less experienced Liz wouldn’t have chosen death?
For Carr, the framing about having a “right to die” isn’t quite right. Instead, this is about having the resources for people like herself to live. And the availability of such resources depends on society’s attitudes toward illness and disability.
“There’s a terror of this loss of dignity,” says Jamie Hale, a disabled man featured in Carr’s 2024 documentary film on the subject, “Better Off Dead?” Framing assisted suicide as necessary for maintaining one’s dignity and autonomy sends a troubling messaging about the disabled and suffering.
Advocates of assisted dying often feature images of people being bathed or toileted by caregivers to associate being vulnerable or needing care with indignity or lack of autonomy. “But,” Hale continues, “I’ve learned this has nothing to do with my inherent sense of dignity as a person and knowing that makes me so much freer.”
Hale’s experience reminds me of the counsel of then-apostle President Russell M. Nelson in 2016, who taught, “Each of us has likely had times when distress, anguish, and despair almost consumed us. Yet we are here to have joy.”
It’s not merely joyful experiences that teach us to feel joy, however. It is often through life’s pains and disappointments that we learn to lift our gaze and develop qualities that secure us a deeper, more lasting happiness. When one kind of dignity or autonomy is taken from us, for instance, it can spur personal development like Hale’s, who now has a deeper sense of both.
Of course, proponents of assisted dying in the U.K. are not simply trying to avoid all suffering. “We are shortening death, not life, for our patients,” insists Peter Prinsley, a surgeon and member of Parliament. Lawmakers like Prinsley argue that their bill will not affect marginalized lives, since it only applies to terminally ill patients for whom death is imminent. Advocates feel it’s unfair to prolong the suffering of those who are already dying. “This is not life or death; this is death or death,” argues Prinsley.
But critics of the bill have pointed to the way that such laws have quickly expanded their scope in other countries, such as Belgium and the Netherlands, which now offer assisted dying to children of all ages. This is partly due to the fact that what counts as unbearable suffering is not easily definable, which means laws around euthanasia and assisted dying are unlikely to remain static.
Canada legalized assisted suicide in 2016 for the terminally ill. Within five years, it expanded eligibility to those suffering from “a grievous and irremediable medical condition,” but whose death is not foreseeable. In 2027, that eligibility will extend to those who meet no other medical criteria other than mental illness. Such laws imply that the problem for the mentally ill is not their illness, but their life.
Support for the dying, the disabled and the mentally ill is naturally costly and time consuming. These sometimes extreme costs of sustaining life ought to make us more concerned, not less, about the risks of normalizing the role of the state and caregivers to end life. British lawmaker Meg Hillier argues that assisted dying presents “a fundamental change in the relationship between the state and the citizen, and the patient and their doctor,” since, according to the American Medical Association, “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer …”
Questions about the validity of a “right” to end one’s life cannot be separated from the problems of overloaded healthcare systems and rising rates of loneliness and despair. As New York Times columnist Ross Douthat recently commented, “it’s not a coincidence where and how (assisted suicide) is coming in: amid bureaucratized stagnation, expressing the spiritual logic of societies that lack confidence, optimism, the will to live.”
The issue at the heart of the debate over assisted dying is hope. Do tragic occurrences make one’s life a tragedy? One which can only be ended or endured, rather than transcended? How we answer that question will determine where our limited resources, individually and societally, are applied. Only when we believe life is valuable despite serious challenges may we be willing to take the costly and sometimes counterintuitive steps toward improving life for those who suffer.
But if the value of life is simply in the eye of the beholder, developments in alleviating human suffering will be constrained by the limited vision of those who cannot see beyond the pain of the present. This is why hope, not reason, drives progress and innovation. I see this idea in the words of the Book of Mormon prophet Moroni as he witnessed the end of his civilization. “Whoso believeth in God might with surety hope for a better world … which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works …”
People who hope for a better world really do abound in good works. For believers, God is like a guarantor of progress, since one of his messages is that pain and difficulties need never be permanent obstacles. But even the nonreligious can still have faith that no problem is ultimately unsolvable. Without that vision, the future we wish for will likely surrender itself to our present fears.
Carr insists that her own opposition to assisted dying doesn’t arise from any religious impulse. “Because those in favour of it like to discredit any opposition as anachronistic and arising from faith, I feel obliged at this point to tell you that I am not religious,” Carr said. You certainly don’t need to believe in God to believe that legalizing assisted dying is too risky. But as religion fades from our social consciousness, we will need a new way to measure the value of life in the face of suffering.