The Committee overseeing evidence gathering on the Terminally Ill Adults (End of Life) Bill has given in to pressure to include a Deaf and Disabled People’s Organisation (DDPO) on their list of witnesses giving oral evidence this week.
The UK Deaf and Disabled People’s Monitoring Coalition welcomes the decision to include Disability Rights UK (DR UK), but believes the move has come too late in a process that has been inaccessible and dismissive of Deaf and Disabled people’s concerns.
Ellen Clifford, UK Coalition co-ordinator said, “It’s good news that the Committee will be able to hear the perspective from organisations run and controlled by Deaf and Disabled people. Our organisations have expertise in a number of the very complex and difficult issues at the heart of this bill.
“These are key issues that MPs need to understand before they can be expected to vote in an informed way, for example the lack of any clear line between terminal illness and disability, the difficulties that even very
experienced professionals have in detecting coercion, issues about capacity and so on.
“It is vital that the Committee does not look at legalisation of assisted dying as an abstract question but fully considers the range of evidence that could be at their disposal about the workability of the bill and its implications.
“We are disappointed with the Committee’s decision not to hear from any organisations with frontline experience of working with victims of domestic abuse given the importance of ensuring the bill has rigorous safeguards.”
Disability Rights UK is a DDPO that advocates for 350 organisations and is an active
member of the Coalition.
Kamran Mallick, Chief Executive of DR UK, said: “It’s welcome that the Committee has revised its decision and now included DDPOs within the list of witnesses giving oral evidence over the next few days.
“No DDPO in the UK is in favour of Assisted Suicide. That isn’t some dogmatic, entrenched position. Disability Rights UK only recently changed our position from neutral to against. This is on the basis of Deaf and Disabled
people’s lived experiences backed up by robust evidence and expertise in disability issues.”
One such example is that of Kevin Caulfield who in his early thirties was diagnosed with a ‘terminal’ HIV-related neurological condition with a prognosis of less than 6 months to live. He was in a desperate situation both physically and mentally.
He freely admits he was so desperate he may well have jumped at the opportunity of ‘assisted dying’, meeting all the criteria of the proposed Bill, but 27 years later he is still here.
Sharing his story, Kevin Caulfield said, “At the time I was desperate and may well have jumped at the chance of the choice of “assisted suicide”. But it would have been a very loaded choice, not a choice at all in my opinion.
“Why? Because I was scared, I felt I had no control, losing functions by the day or enough relevant support. Assisted dying would have given me a focus when what I needed was more time with loved ones and frank conversations
about how to deal better with multiple symptoms.
“That’s why it’s so critical to listen to and take seriously Disabled people with relevant experience. Morally that is the right thing to but that takes time and resources to really involve us in accessible ways.
“Anyone with a terminal diagnosis is a Disabled person in law and yet we are not as Disabled people being treated with equity in this rapid process. It’s important that Parliament does really engage with Disabled Peoples
Organisations otherwise they risk getting this very wrong.”
The Call for Evidence doesn’t give clear information and many Deaf and Disabled people’s organisations, let alone individuals potentially impacted by the bill, have missed it entirely
The process and progression of the bill is not subject to the Equality Act 2010 in the same way as a public bill introduced by the government would be. It is therefore exempt from duties to make sure Deaf and Disabled people have the same opportunities to engage with it as non-disabled people. Without the same chance to
receive information and views from us as from non-disabled people, this limits the ability of the bill Committee to thoroughly interrogate the potential risks and safety of the proposed legislation.
Tracey Lazard, CEO of Inclusion London said, “We are relieved that a DDPO will now be heard from by MPs on the Committee. However, our concerns about lack of engagement are much wider than just oral evidence. The bill is travelling through Parliament at a speed that is completely inaccessible to Deaf and Disabled people. Private Member’s Bills are not subject to the same Equality Act requirements that apply to government bills such as a duty to make reasonable adjustments to allow Deaf and Disabled people the same chance to engage as other groups.
“To our dismay the cards appear powerfully stacked against Deaf and Disabled people having the opportunity to share our expertise with MPs as they scrutinise such an important bill.
“This is unacceptable – given the relevance of this Bill to our community the committee must in the name of fairness ensure it follows the principles and practice of the Equality Act and proceed in a way that gives Deaf and Disabled people a genuine opportunity to have our voice heard on this critical issue.”
The call for evidence for written submissions to the Committee went out at the start of January but it has not been provided in accessible formats and there was no clear information about the deadlines for submitting evidence to the Committee in time for amendments to be made.
The lack of targeted outreach and resistance to including a DDPO representative has made it unjustifiably difficult for disabled people to inform the Committee of their concerns and fears about the Bill.
The Bill affects Deaf and Disabled people
Deaf and Disabled people in the UK are disproportionately affected by inequality. This includes a greater likelihood of living in poverty. We are also disadvantaged which poorer life chances as a result of increasingly restricted access to social care support, mental health services and timely medical care.
The options and support for Deaf and Disabled people to live our lives well are extremely limited, meaning that we do not have equal chances if we become terminally ill.
Arguments that the Bill is not about Deaf and Disabled people shows an alarming lack of understanding of what disability is and of the potential equalities impacts for Deaf and Disabled people who have terminal or progressive conditions and for those of us who become terminally ill.
Paula Peters, spokesperson for Disabled People Against Cuts said, “We needour voices to be heard about what life is like for disabled people, especially after a decade and a half of austerity. Anyone who is disabled who becomes
terminally ill or those with progressive conditions are experiencing that within a context of cuts to all the vital services we rely on to survive.
“In 2016 the United Nations found the UK government guilty of grave and systematic violations of disabled people’s rights. Since then, things have got much worse. According to the new government’s plans things are set to get
much worse still. You can’t give disabled people an equal choice to die until you give us more of an equal choice to live. There are more than 16.1 million of us across the UK so the equalities impacts on should not be an insignificant
consideration.”
More detail on how the Bill affects disabled people can be found here:
https://dpac.uk.net/2024/11/why-the-terminally-ill-adults-end-of-life-bill-does-affect-
disabled-people/
Editors’ notes:
Deaf and Disabled People’s Organisations (DDPOs) consist of disabled people including those with terminal illness and people with progressive conditions that will become terminal. DDPOs have expertise in disability and the issues that go to the heart of the Bill, including medical coercion, mental capacity and where the line is drawn between disability and terminal illness. Under the Equality Act 2010, people with terminal illness are counted as disabled.
The UK DDPO CRDP Monitoring Coalition co-ordinates written and oral evidence from UK DDPOs for examinations and inquiries by the UN Committee on the Rights of Disabled People. The Coalition includes: Alliance for Inclusive Education, All Wales People First, Black Triangle campaign; Disability Rights UK, Disability Wales,
Disabled People Against Cuts, DPAC Northern Ireland, Inclusion London, Inclusion Scotland, Liberation, Reclaiming Our Futures Alliance.
DPAC briefing on the Bill: https://dpac.uk.net/2024/11/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition-2/
#AssistUsToLive
END
