On 11 September, MPs will decide whether to proceed with the latest Terminally Ill Adults (End of Life) Bill, sponsored by Lauren Edwards. Despite hours of scrutiny and amendments in the Lords, it’s substantially unchanged. It feels like Groundhog Day.
Disabled people are weary of explaining why assisted dying is particularly dangerous for us. Without realistic alternatives, quality health and social care, personal assistance and good palliative care, the temptation to end an intolerable life can be all too real.
A report from Insightful Disability, launched this week, found 62 per cent of disabled people aged 18–34 worry that disabled people could feel pressured into assisted suicide if it were legal, against 25 per cent of those aged 55 and over. Only 58 per cent feel listened to and respected by medical professionals, and fewer than half feel informed about their medical rights and protections. How, then, will disabled people navigate the proposed assisted dying pathway safely?
Despite disabled people’s well-grounded fears, the debate largely centres on individual stories of neglect or suffering. But hard cases make bad law. I understand why this is emotionally difficult: my first husband, Graham, contracted HIV through the NHS’s contaminated blood products, and his end-of-life journey was about as hard as it gets. His experience, alongside my own fight for support to live a purposeful life in the community, informs every contribution I make to this debate.
I understand the desire for control at the end of life. But after decades studying assisted dying legislation internationally, and campaigning alongside disabled people for their rights, I am certain disabled people will pay a heavy price if this Bill becomes law.
This is not because disabled people are less capable of making decisions. We’ve fought for decades for full and equal inclusion in society, and for choice and control over the support that makes self-determination possible. But choice is only genuine when a real alternative exists.
For thousands of disabled people, those alternatives simply don’t exist. Social care is depleted, NHS resources are stretched thin, accessible housing is scarce, and palliative care is patchy. Families are exhausted, and disabled people can spend years fighting for the support needed to live ordinary lives in their own communities. So how can we know that a person’s wish to die is entirely free when the support that makes life liveable is increasingly absent?
The Bill’s safeguards are meant to ensure a person has capacity, has made a clear and settled decision, and has not been coerced. Two doctors must assess the request before it goes to an Assisted Dying Review Panel. The Lords found these safeguards wanting and amended the Bill. Lauren Edwards has not addressed the safeguarding weaknesses before tabling her Bill, and I worry about disabled people’s resilience in the current climate.
Nobody needs to tell a disabled person they should die for them to feel like a burden. Imagine being repeatedly denied care, living somewhere you dread because you can’t afford to adapt it, or being called tragic, dependent or too expensive for decades. Imagine constantly hearing others say they would rather die than live like you.
The Government’s own Equality Impact Assessment acknowledges that disabled people are more likely to feel a burden and face barriers accessing services, and that these factors could affect decisions about seeking an assisted death. These go to the heart of whether consent is genuinely free. They cannot compensate for a society where disabled people already face profound inequality and discrimination.
I have spent my life challenging the assumption that dependence makes a person’s life less valuable. Now, thousands of us live independently, work, travel and raise families, contributing as equal citizens, with the support to do so. But these hard-won freedoms are under threat from successive governments’ search for savings
My opposition to assisted dying has never been an argument against choice
My concern is not simply the growing numbers worldwide who choose assisted dying. It is what happens to the rest of us when the law establishes death as an authorised, endorsed response to individual suffering. I rely on my doctors and care staff to do their utmost when life becomes tough, to value my life and dig deep to offer supportive remedies in my darkest hours, until life becomes bearable again.
Disabled people know that autonomy without support is not freedom. It can be abandonment dressed up as choice. My opposition to assisted dying has never been an argument against choice. It is an argument for making sure disabled people have genuinely equal choices.
Before parliament creates a legal route to death, it must confront the uncomfortable reality that disabled people are still routinely denied the basic conditions for a good life. That is the elephant in the room.
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