To Prime Minister Andy Burnham and MPs
(Link to the Open Letter to Prime Minister Andy Burnham)
We are a group of disabled and terminally ill people who agree that the status quo cannot continue. But we believe that the only safe way to reduce suffering at the end of life is to reform the social and palliative care systems before any move is made towards a programme of assisted suicide.
Throughout history, disabled people’s lives have been consistently devalued, and we still experience this in the present on a daily basis. We are constantly fed the narrative that we are burdens, benefit scroungers and that it’s better to be dead than disabled. Not only do some of us internalise these messages, so do many of the people we encounter or rely on for support. Many disabled people have been made to consider suicide — not by the impact of our conditions, but the social context we live in.
Before we can talk about choosing to die, we need real autonomy over how we live our lives. At the moment, sick and disabled people, including terminally ill people, are denied choice over the most basic of things: our ability to get out of bed, wash, eat, leave our houses or manage our pain. This creates a coercive environment where people will choose an earlier death simply because they are being failed by society. Put simply, introducing assisted dying in these circumstances will put sick and disabled people’s lives at risk.
The prime minister is right: we must reform the care system before this bill can be considered and disabled people must be included in the conversation.
We are calling for you to vote No on the Terminally Ill Adults (End of Life) Bill and then work with disabled people and our organisations to: Fully fund palliative care to ensure comprehensive and compassionate care is available to everyone who needs it, ensuring no one feels pressured to end their lives simply because they are not receiving the medical help they deserve;
Abolish the social care savings threshold for working-age social care users, so we can save for essentials and major life milestones such as a vehicle or home downpayment without risking our support, and are at less risk of financial coercion. End financial penalties and benefit reductions for disabled people who live with a partner, protecting financial independence and making it easier for those in coercive or abusive relationships to leave safely.
Equalise pay between social care and the NHS, thereby reducing staffing shortages and ensuring sick and disabled people receive professional care from well-trained care workers, vastly reducing suffering during and at the end of life; and
Form a taskforce on independent and supported living, led by disabled people, and set out a time scale for implementing its recommendations within six months of its first report, so that we can move towards a society where terminally ill and disabled people have choices in all areas and stages of life, as well as at the end of it.
We understand the flaws in the current system. No one wants any terminally ill person to suffer unnecessarily at death. But we must protect the lives and rights of disabled and terminally ill people in life. We urge you to hear our voices, understand our fears and work with us to create a system that is safe for all: one that assists us to live.
Sincerely
Lucy Webster, Anna Landre, Jamie Hale, Kyla Harris, and Rensa Gaunt on behalf of The Assist Us To Live campaign
Lucy Webster, Journalist and Advocate / Assist Us To Live
Anna Landre, Marshall Scholar, University College London / Assist Us To Live
Jamie Hale, Artistic and Executive Director, CRIPtic Arts / Assist Us To Live
Kyla Harris, Filmmaker / Assist Us To Live
Rensa Gaunt, Campaigner / Assist Us To Live
Liz Carr, Actor and Member, Not Dead Yet
Ruth Madeley, Actor
Baroness Jane Campbell of Surbiton, Member, House of Lords and Convenor, Not Dead Yet UK
Rosie Jones, Comedian
Samantha Baines, Actress and Broadcaster
Mat Fraser, Actor and Writer
Sophie Morgan, TV Presenter
Andrew Miller MBE, Cultural consultant & Broadcaster
Samantha Renke, Broadcaster
Mik Scarlet Wallace, Broadcaster and Co-CEO, Phab
Kamran Mallick, CEO, Disability Rights UK
Tracey Lazard, CEO, Inclusion London
Adam Gabsi, Chair, Inclusion London
Ellen Jones, Author
Cherylee Houston, Actor
Victoria Jenkins, Designer
Dr. Nora Groce, Professor, University College London
Dr. Eben Kirksey, Professor of Anthropology, University of Oxford
Catherine Holloway, Professor, University College London and Director, Global Disability Innovation Hub
Dr. Victoria Austin, Professor, University College London
Dr. Maria Kett, Professor, University College London
Natalie Kane, Curator, V&A and Deputy Leader of Lambeth Council, Green Party
Arthur Hughes, Actor
Rick Burgess, Care in Crisis Coalition and DPO Forum Co-Chair
Sarabajaya Kumar, Associate Professor, University College London and Director, Impatience Ltd.
Tracey Jannaway, Director, Independent Living Alternatives
Colin Brummage, CEO, Camden Disability Action
Rachel Charlton-Dailey, Journalist and Author
Cathy Reay, Writer and Journalist
Damian Joseph Bridgeman, Disability Task Force, Welsh Government and Chief Executive, Bridgeman Community Foundation
Selina Mills, Writer and Broadcaster
Shani Dhanda, Accessibility Specialist
Hannah Barham-Brown, NHS GP
Dr. Gordon Macdonald, Care Not Killing
Rachel Gadsden, Artist and Director
Tamm Reynolds, Artist
Dr. David Turner, Professor, Swansea University
Dermot Devlin, DPAC Northern Ireland
David Jones, Professor of Bioethics, St Mary’s University, Twickenham
Peter Gay, Director, Disability Advice Service Lambeth (dasl)
Dr. Kevin Yuill, Professor Emeritus, University of Sunderland
Doug Paulley, Reasonable Access
Natalya Dell, Trustee, Reasonable Access
Tanya Motie, Former TV Executive
Aisling O’Connor, Co-founder and CEO, The Rosie Jones Foundation
Sue Groves MBE, Disability Campaigner
Dr. Amy Kavanagh, Activist
Dr. Louise Hickman, University of Cambridge
Jess Thom, Artistic Director, Touretteshero
Iyiola Olafimihan, Non-Executive Director, Global Disability Innovation Hub and Justice and Campaigns Lead, Alliance for Inclusive Education
Dan Edge, Actor and Access Coordinator
James Moore, Journalist
Natalie Amber, Actor
Elle McNicoll, Writer
Dr. Rob George, Professor, King’s College London
Eleanor Lisney, Director, Sisters of Frida
Jillian Nystedt
Ella Glendining, Filmmaker
Andrew Clark, Chair of Trustees, BuDS Disability Service
Wednesday Holmes, Illustrator and Author
CJ DeBarra, Author and Journalist
Simon Ford, Trustee, Independent Living Alternatives
Penny Pepper, Writer and Trustee, Independent Living Alternatives
Carrie-Ann Lightley, Writer
Lou Chandler, Content creator
Isaac Harvey, Disability Advocate
Dr. Calum Miller
Angie Airlie, CEO, Stay Safe East
Clare-Louise English, Director
Dr. Ros Jones, Paediatrician
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