UK: Might You Die Because You are Unable to Say You Want to Live?

There is no doubt that Baroness Campbell of Surbiton made the difference in a very important debate in the UK House of Lords last week.

Speaking in opposition to an amendment proposed by Lord Falconer, which sought to decriminalize the actions of people who help others commit suicide, the good Baroness delivered a compelling speech that was the main reason the amendment was defeated.

Baroness Campbell, born with a degenerative muscular condition, understood the implications of the amendment, which was generated by the intense reporting over the last few years of many UK citizens, who, accompanied by others, had travelled to Switzerland for assisted suicide at the Dignitas clinic (here, here, here, here).

Ahead of the debate, Baroness Campbell penned a persuasive public letter laying out her position. ISDB, along with a number of other US and UK disability advocacy organizations, was a signatory to the letter.

Last Sunday, Baroness Campbell detailed her struggles and her ultimate conviction that her life was worth living.

She also noted that in one hospital emergency, where she was unable to speak for herself, she was lucky to have had her husband Roger there to speak for her, because it was clear that the doctors were going to let her die, and had already agreed on a “do not resuscitate” order, ostensibly because of her poor quality if life.

I was horrified to learn that it was only after Roger showed the doctors a photograph of Baroness Campbell getting an honorary doctorate in law from Bristol University that they were persuaded that she did, indeed, have a good “quality of life.”

That’s what we’ve come to: Having to prove to our doctors that our lives are worth living, and therefore worth saving.

Is there still anyone who thinks that, had Roger not been at his wife’s side, that she would be giving an interview in her sunny garden last Sunday?

Is there still anyone who doesn’t think that among the many thousands of people with medical and other disabilities that turn up alone in UK hospitals in similar circumstances, that many are allowed or encouraged to die even if they want to live?

ISDB Signatory to Baroness Campbell’s Letter Opposing Proposed UK Pro-Assisted Suicide Amendments

Last week, in London, a motion was introduced in the House of Lords to strike down legislation that allowed for the prosecution of anyone helping another commit suicide. The motion was introduced by Lord Falconer to protect those who travel with another person seeking assisted suicide in foreign countries, and who then risked prosecution when they returned to the UK.

The motion was defeated, in part, because disability advocates and organizations in the US and the UK, including ISDB, joined as signatories to an opposing letter written by Baroness Campbell, a member of the House of Lords who has a disability.

Open Letter from Leaders of Disabled People’s Movement in UK and USA

Dear Sir,

As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact on the lives of disabled people.

If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.

The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.

These concerns are not side issues that only affect disabled people. We are like society’s ‘canaries in the coalmine’ who can often see the dangers of potentially discriminatory legislation before others, as it impacts on us even before the deed is done. We are scared now; we will be terrified if assisted suicide becomes state-sanctioned.

The existing law, with the penalties it holds in reserve, causes potential assisters and those wishing to die, to think very carefully before acting. The discretion within the current law enables judges to exercise compassion in hard cases. What is not broken does not need fixing.

Disabled people have been largely silent in this debate which has been carried out in the media by clerics, non-disabled commentators and a small handful of individuals with terminal conditions who are supported by Dignity in Dying. Until people like us are present to engage in this highly complex and ethical debate, we must strongly oppose any device such as Lord Falconer’s amendment to get assisted dying in through the back door.

Baroness Campbell of Surbiton

Crossbench Peer

Liz Sayce, CEO, RADAR

Julie Newman, Chair, United Kingdom Disabled People’s Council (UKDPC)

David Morris, Chair of Independent Living Alternatives

Haqeeq Bostan, Director of New Disability Policy Forum

Diane Coleman, President, Not Dead Yet

Rachel Hurst, Disability Awareness in Action

Mike Smith, Chair, National Centre for Independent Living

Colin Revell, CEO, NeuroDiversity International (NDI)

Marilyn Golden, Disability Rights Education and Defense Fund (DREDF)

Alison Davis, National Coordinator, No Less Human

Dr. Mark Mostert, Director, Institute for the Study of Disabilities & Bioethics (ISDB)

Alice Maynard, Director, Future Inclusion

Linda Burnip, Executive Health and Safety Officer for Warwickshire and Coventry CDP

Liz Crow, Roaring Girl Productions

Stephen Drake, Research Analyst, Not Dead Yet

Adrian Whyatt, Chair, NeuroDiversity International (NDI)

Keith Armstrong, Historian, writer, musician and video maker

Dawn Willis, Activist/Trainer affiliated to RETHINK

Professor Colin Barnes, Centre for Disability Studies, University of Leeds

Louise Clifford, Daughter of Max Clifford

Leonard Zandrow, General Counsel, National Spinal Cord Injury Association

Ann Macfarlane OBE, Kingston CIL

Andrew Bruce, East Sussex CIL Development Worker

Tara Flood, Director, Alliance for Inclusive Education

Andrew Little, Director, Ahead Disability Equipment & Consultancy LLP

Alison Cater, Director, Ahead Disability Equipment & Consultancy LLP

Janice Ollerton, Disabilities Studies Researcher/Activist (Australia)

Joseph M. Camilleri, CHAIR, Kummissjoni Nazzjonali Persuni b'Dizabilità (Malta)

Julie McNamara, Activist / Director Crossings Theatre

Kate Nash, Not Dead Yet

Roxanne Homayoun, Direct Action Network

Dr Ju Gosling, Chair, Regard

John W. Smith, Coordinator Disabled Peoples Alliance, Northamptonshire

Kelly Buckland, Executive Director, National Council on Independent Living