At first look, it all seems so sensible: people who find no value in their lives should be allowed the choice to end them. Right? Wrong, says Dr John Fox – and here’s why.
One of my first memories is pain. It was my first hospital operation, a corrective surgery to make it easier to walk. People advanced on four year old me to remove my cast and mobilise my feet. My parents tried vainly to distract me, as I tried to find the face of my favourite nurse. I still remember that feeling of radical vulnerability, pinned to a table, trying to find words to explain what was happening, trying to feel safe.
It’s that feeling that came back to me last month, when David Seymour’s End of Life Choices bill was pulled from the ballot.
It seems so reasonable, and Mr Seymour makes the argument with the slightly rabid consistency of the convinced Libertarian. “My life, and my death, is my business”. Buttressed by really tragic and truly awful situations like those of Lecretia Seales, who would welcome pain? And of course, shouldn’t we let people who find no value in their lives make the choice to end them?
No. Here is why.
I live with a mild form of cerebral palsy and various associated problems including spastic hemiplegia. I know from first-hand experience how hard it is to be physically vulnerable, to lose control of one’s own body, how hard it can be to depend on other people, how easy it is to feel like a burden. From this angle I have every human sympathy with Lecretia Seales and others like her who show us how real, ugly and frightening death can be.
But I’m also a trustee of a disability organisation that has a 40 year history of advocating for the vulnerable. For many people we see at Elevate, suffering is a fact of life. We reject, and we resent, the idea that being sick, or even terminally ill, takes away our dignity. Many of us have incurable conditions, some much worse than mine, that would qualify under the bill’s massively broad drafting: the blind, the deaf, those with chronic pain, or long-term disability. And me.
Including us in a category of people who may be legally killed is redolent of the worst attitudes of the past.
If we were an organisation representing, say, 25 year old rugby players, we would not have to make the case that their suicide would leave society poorer. Their death would be seen as a waste, a tragedy that should be prevented, no matter what. Because we are disabled people with incurable conditions, we now have to make that case. Why?
Being sick doesn’t make your life worth less. Suicide is not medical care. And people don’t make life and death decisions by themselves. Those choices are made in a context – the same contexts we would recognise in youth or elder suicide.
When I lie on my bed, wishing my body were different, wishing I could compete on the same scale as the powerful, and questioning the value of my life, my friends and family remind me of something David Seymour’s bill forgets: Pain, like death, is a team sport.
Surrounded by solidarity, the love of caring families, and the competence of medical professionals, we can carry together the experience of suffering, find meaning and stillness inside it, say the things that should be said, and make and receive the peace we need.
I can receive the assurance than I am loved by the people close to me, that my death would leave them poorer. It’s that trust, that moment of connectedness and care, I rely on as a disabled person. And it’s that trust assisted dying attacks. It tears the trust between medical professionals and their patients that doctors will cure, not kill. It brings the spectre of killing as an option to every death bed, to every overworked administrator, to every hospital looking for budget cuts. The power of life and death hovers over every legal loophole, not in a thought experiment or an internet poll, but in real life exposing the elderly and the infirm, the vulnerable and inarticulate to appalling risks.
It’s common for people to have stereotypes and prejudices about disability and illness. It’s common for people to say “I wouldn’t want to live like that” or “We’d put down a dog who was suffering like that”. But “people”, including the Greek chorus in the media, ignore people like us, who live “like that” every single day. And vague, or even specific, safeguards, are inadequate to the task of protecting us in a society increasingly tempted to do the easy thing. It’s easy to say “if you don’t believe in the choice, don’t make it” but this ignores the effect creating the category already has on our country, and on how it values the disabled.
We already know as disabled people that we have to fight to have a job, fight to be born, fight structural prejudice, patronising assumptions, and cultural realities which call us less than, and worth less. Those challenges are likely not equal for you and me, and the impact of David Seymour’s bill would not be equal either.
Disabled people, like the very young, and the very old, depend on others seeing and protecting our value. But past platitudes about inclusion, it’s moments like this that tell us what our society really believes about the infirm and the sick. Are we “all in this together?” or do some people’s lives matter less?
Dr John Fox is trustee of Elevate Christian Disability Trust. He is a son, a brother, a grandson, a friend, and an Anglican ordinand.