Prof Shakespeare says vocal opponents don’t speak for the majority (Image: PA)
Disabled people, unusually, are given abundant airtime and column inches to express our thoughts and concerns about assisted dying. While it’s always important for the voices of disabled people to be heard, I also worry about the false assumption that has been created by a small group of vocal opponents of law change within the disability rights community.
As MPs come to debate the first before the House of Commons in nearly a decade, I want to correct this misapprehension. Evidence shows that, in fact, a majority of disabled people, including myself, support a change in the law to allow people who are dying the option to shorten and ease that process if they wish.
Contrary to , our views generally mirror those of non-disabled people on this issue, or are even stronger. In March, the largest and most in-depth survey of public opinion on assisted dying to date revealed that while three-quarters of the public as a whole would support a change in the law, among disabled people, it was closer to four-fifths.
I understand why some longstanding disability rights campaigners may be anxious about assisted dying laws that have broad eligibility criteria on the basis of ‘unbearable suffering’ rather than a specific prognosis. I agree with them. I think that Belgium, The Netherlands and Canada have got this wrong.
That is why I believe an assisted dying law based on terminal illness is the only way to balance principles of autonomy and protection. It sends a clear message that terminally ill people’s choices are respected and disabled people’s lives are valued.
MP Kim Leadbeater’s Bill faces a vote next Friday (Image: PA)
This is what the proposals on the table in Westminster and across the British Isles seek to do. Their narrow focus – only for those with a terminal diagnosis – confirms that the law is about offering a choice not between life and death, but between a death on one’s own terms and one that may be prolonged and traumatic.
Of course, disabled people still face stigma and inadequate support. We also need better hospices and palliative care for everyone. These problems need urgent attention. But it is a mistake to think that we should oppose legalising assisted dying for terminally ill people until those wider problems are fixed.
Dying people should not be held hostage to systemic failures. It is paternalistic and offensive to imply that inequalities will be resolved by reducing some people’s choices. A clear, transparent legal framework for end-of-life choice is better for everyone.
The limited legislation being proposed for the UK is in line with the majority of assisted dying laws around the world, including those in 10 US states, all six Australian states and across New Zealand.
Globally, two in three jurisdictions with assisted dying legislation require a terminal diagnosis before any request can be made. No such law has been expanded or repealed, as confirmed by a neutral panel of cross-party MPs who led the Health and Social Care Select Committee’s inquiry into assisted dying in the last Parliament.
Opponents are making their voices heard ahead of the debate (Image: PA)
Broader assisted dying laws were broad from the very outset; there is no drift from terminal illness criteria to wider eligibility over time. The Select Committee also found that terminal illness laws are safe and often lead to improvements to end-of-life care. That benefits the whole of society, regardless of whether people are eligible for, or would choose, an assisted death.
Systematic reviews have examined the uptake of assisted dying amongst vulnerable people, including disabled people, and have concluded that the hypothesis that disabled people might be disproportionately impacted ‘does not seem to be borne out’(Colburn B, 2022) and that no harm appears to have befallen people with disabilities or others as a result of permitting aid in dying (Riddle, C 2023).
In her evidence to the Scotland consultation on assisted dying, Patricia Malowney, a disability activist and advocate and a member of the Victorian (Australia) Ministerial Advisory Panel on voluntary assisted dying, noted that “overwhelmingly the people in my community have been reassured by the stringent safeguards and robust monitoring systems under the Voluntary Assisted Dying Legislation in Victoria.”
Disability Rights Oregon, which operates in a state that has had an assisted dying law for terminally ill people for more than a quarter of a century, has never received a single complaint about assisted dying. While the concerns expressed by some disabled people and others opposed to law change are important and must be heard, they are ultimately hypothetical and unproven.
Any reforms need safeguards – strict eligibility criteria, a cooling off period, the approval of two independent doctors, judicial oversight, for instance, as in this Bill. But it’s important to note that the UK’s current laws have none of these upfront protections. Terminally ill Britons are already dying with assistance – but they are seeking that assistance abroad at eyewatering expense, or illegally at home with help from family members or doctors.
We have no way of knowing if pressure or abuse is involved in these cases until after the fact, if at all. Make no mistake – this is the system that opponents of law change are condoning; one that lacks not just choice for those who want and need it, but scrutiny, regulation and accountability for everyone.
Assuming strict checks and balances are met, to me it is inarguable that someone with terminal illness should have control over the timing and manner of their death. We all deserve a good life, with us in control; that principle of Independent Living has been the driving force of the disability rights movement.
When we reach the end of our lives, we also deserve a good death, with us in control; an equally noble aim that can and should be pursued in parallel.
– Professor Tom Shakespeare is a sociologist and professor of disability research