Image source: assistustolive.com
A coalition of disabled and terminally ill people, and allies, have called on Andy Burnham and MPs to halt the assisted suicide Bill until palliative and social care have been comprehensively reformed.
In a letter organised by the Assist Us To Live campaign, signatories argue that disabled and terminally ill people should receive “as much support to live as this bill would provide for us to die.”
The group says the current care system already leaves many disabled people without meaningful control over basic aspects of daily life, including washing, eating, leaving home, and managing pain. It warns that introducing assisted suicide in these circumstances could create a coercive environment in which people choose death because adequate care and support are unavailable.
The letter backs Burnham’s position that care reform should come first and calls on MPs to vote against the Terminally Ill Adults (End of Life) Bill before pursuing major improvements to palliative care, social care funding, independent living, and financial protections for disabled people.
THE LETTER:
To Prime Minister Andy Burnham and MPs,
We are writing to call for a halt to the legislative process around assisted dying until disabled and terminally ill people have as much support to live as this bill would provide for us to die.
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 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
