Disabled activists have raised fears that they may not be asked to give evidence in public at a high-profile Commons inquiry into legalising assisted suicide.
The health and social care committee began taking oral evidence this week, hearing from four peers and three academics, none of whom appear to identify as a disabled person.
The committee has already received thousands of written statements, following a call for evidence.
But Not Dead Yet UK (NDY UK), the leading organisation of disabled people campaigning against legalisation in the UK, has told Disability News Service of its concern that it will not be asked to give evidence in public.
NDY UK said it was “deeply concerned” about the representation of disabled people and their organisations in the committee’s hearings.
They are calling for a guarantee that disabled people or their organisations will be able to give oral evidence in public.
Phil Friend, co-convenor of NDY UK, said: “As an organisation that strongly advocates for the rights and well-being of disabled individuals, we believe that the voices of disabled people must be included in any discussions that can directly impact their lives and the perception of their quality of life.
“We acknowledge the importance of hearing from peers, academics, and healthcare professionals during the inquiry.
“However, we firmly believe that the lived experiences and perspectives of disabled people are crucial in understanding the complexities and consequences of assisted dying and assisted suicide.”
Friend said it was crucial to examine the safeguards that would be needed to prevent abuse, coercion, or undue pressure on disabled people if assisted suicide was ever legalised.
He added: “Excluding disabled people’s voices from these discussions could lead to a skewed understanding of the issue and, ultimately, result in policies that may be detrimental to the disabled community.”
The committee declined to guarantee that it would hear from disabled people and organisations run and controlled by disabled people in the public evidence sessions.
But a spokesperson for the committee said: “In carrying out its inquiry into assisted dying/assisted suicide, the health and social care committee has received written evidence submissions from individuals and organisations from different perspectives in the debate.
“The first evidence session has taken place this week and members will move to hear from other voices in future sessions, which will be announced in due course.
“Guidance on giving evidence to select committee inquiries is available on our website.”
This week’s first evidence session saw Baroness Hollins, a doctor and psychiatrist, who has previously spoken out in the Lords against legalisation, tell the committee: “I am very, very worried about the unintended consequences and I think that no country in the world has succeeded in creating a law which actually protects people who find themselves in vulnerable situations.”
Baroness Meacher, chair of the pro-assisted suicide organisation Dignity in Dying, who has previous attempted – and failed – to legalise assisted suicide through a private members’ bill, told the committee: “At the moment, some people have to choose between suicide, suffering or Switzerland.
“Future generations are going to be appalled that we have taken so long to put this right.”
She said that 86 per cent of disabled people had supported an assisted suicide law for people who are terminally ill and “mentally competent”. This appeared to be a reference to a Populus poll carried out eight years ago on behalf of Dignity in Dying.
The crossbench peer Baroness Finlay, who has spoken out against assisted suicide in the Lords and is a consultant in palliative medicine, told the committee of a patient who was “desperate” for euthanasia in 1991, and was believed to have just three months to live, but is still alive today.
She said her own mother was strongly in favour of assisted suicide and had been given six weeks to live, and was angry with her daughter for opposing legalisation.
Four years later, she told her daughter she was “really glad” that she had had “the most incredibly rewarding time” with the extra time she had been given, including being able to see her new grandson.
Labour MP Rachael Maskell raised concerns about coercion by abusive relatives of those who have had an assisted suicide in countries where it has been legalised.
Professor Nancy Preston, a professor of supportive and palliative care at the University of Lancaster, who has carried out research on assisted suicide in the US, Switzerland and the Netherlands, said there had been a small number of cases in Switzerland where family members had first introduced the idea of an assisted suicide.
She said there was also a case where a physician had prescribed an assisted suicide – which had been backed by a Swiss right-to-die organisation – but the physician stopped the procedure because the patient “lacked competency” to agree to it.
Professor Preston said: “So is any system possible to have every safeguard in place?
“I think that is going to be very challenging, no matter what, but you’re always going to get some cases, aren’t you?”
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