DDPOs Plan UN Complaint Against Assisted Dying Bill

Deaf and Disabled people’s organisations will call on the United Nations to declare that the passage of assisted dying legislation violates the UN Convention on the Rights of Disabled People (UNCRPD). 

Deaf and Disabled people’s organisations (DDPOs) are supporting two Disabled individuals to make a complaint to the United Nations about the passage of the Terminally Ill Adults (End of Life) bill, arguing key aspects of how the bill is going through Parliament violates the UN Convention on the Rights of Disabled People (UNCRPD).

Both complainants will be personally affected by the bill if it becomes law.

Nicki Myers, 52, lives in Cambridge and has pulmonary fibrosis. Seven years ago she was given fives years left to live. She is 99% bed-bound and lives life to the full with support from her local hospice. She has an Advance Directive, recording her wish to be prescribed sedatives that will hasten her death when the time comes. This gives her comfort that she will not die in pain.

Nicola Waters, 51, lives in Essex and has Motor Neurone Disease (MND), which is a progressive neurodegenerative disease affecting the brain and spinal cord. This leads to muscle weakness and wasting, eventually resulting in paralysis and breathing difficulties. There is currently no cure for MND, but treatments can help manage symptoms and improve quality of life.

Nicki Myers said:“I was motivated to be a complainant in this case because I believe the way this legislation has been introduced, as a Private Members bill, has meant the voices of people in my position (those who want to keep living as well as possible for as long as possible, and with good quality services) have been ignored.

“I also believe the timing of this bill is wrong. When social security, fuel allowance, health, social care and palliative care services are all simultaneously under threat, it is not the right time for people to be asked if they want assistance from the State to end their lives.”

Nicola Waters said:“This bill will see those of us who live with terminal illness being offered suicide rather than the care and treatments we need to live. Numerous amendments that would have made the bill safer have been voted down. As a result I could be offered assisted suicide at every medical appointment I have.”

The complaint focusses on the barriers experienced by Deaf and Disabled people and their organisations in attempting to keep up with and engage in passage of the bill in order to share relevant expertise and personal experiences, and to contribute to the shaping of the bill. 

The complaint will reference six key elements, including:

• The absence of pre-legislative consultation or scrutiny
• The speed at which the bill is progressing
• The failure to publish accessible formats of the bill and related material
• Failing to recognise the importance of engaging with organisations run and controlled by Deaf and Disabled people
• Inadequate arrangements for hearing DDPO evidence at Committee stage

Disabled People Against Cuts, Disability Rights UK (DR UK), and Not Dead Yet UK are among the DDPOs who have submitted witness statements in support of the complaint which is being drafted by public lawyers. It will be submitted following the Report Stage of the bill, due to take place on Friday 16th May.

Ellen Clifford from DPAC said: ‘Changing the law to make assisted dying legal is a momentous decision. Every possible mechanism to explore views and hear from a broad range of Disabled people should have been employed, but have been sadly lacking with this bill.’

Bethany Bale, Rights and Justice Campaigner, from DR UK said: ‘The rushed, flawed, and inaccessible process of this bill so far highlights that now is not the time for this legislation. Safeguards have been weakened, amendments that could have protected us have been voted down, and the Private Members Bill process will not give Parliament enough time to properly scrutinise the bill. There are significant risks to pushing on with inadequate legislation, especially for Disabled people who are at a higher risk of experiencing coercion.’

Liz Carr, actor and activist and member of Not Dead Yet UK said: “It is shocking to me that the voices of disabled people’s organisations have not been adequately heard so far. Particularly during Committee Stage, the amount of information being shared is practically impossible to keep up with. It also feels that our voices have been sidelined, marginalised even as not particularly relevant to this Bill."

DDPOs are hoping the UN will declare the process adopted by Parliament for consideration of the bill violates the Convention. They are also hoping the UN will recommend a review of private member bill procedures; and that private member bills should meet the same human rights and equalities compliance requirements as government bills.

Press Conference

The announcement of the complaint came in a press conference hosted today, which heard from both Nicki and Nicola, alongside Beth Bale of DR UK, Ellen Clifford of DPAC, Liz Carr of Not Dead Yet and Ailidh Musgrave, who spoke of her personal experiences with in-patient hospitalisations as someone with anorexia. She mentioned that for many years, she would have been eligible to be assisted to die because of the physical impact of her eating disorder, a safeguarding loophole the Bill has not considered. Everyone was united in the view that living with a complex terminal diagnosis or long-term illness can certainly lead to periods of despair, but with the right support and care, many people do not want to die. However, with priority given to assistance to die over indepdent living and hospice care, people will feel that is their only choice.

The press conference also highlighted how little Disabled people had been consulted by the Bill's committee. The only Disabled-led organisation to give evidence was Disability Rights UK, and this only occurred as a result of immense public pressure and with only 24 hours notice. Fazilet Hadi, our representative, did not have her reasonable adjustments met on the day she was giving evidence. This begs the question, how can this Bill or process be trusted with Disabled peoples' lives?

To watch the full press conference, take a look at the YouTube video below

Further information about the organisations’ opposition to changing the law on assisted dying can be found at Assisted Dying | Disability Rights UK, Terminally Ill Adults (End of Life) Bill – briefing from UK DDPO CRDP Monitoring Coalition.

We are calling on Disabled people and allies to contact your MPs to raise these concerns and prevent this legislation passing through by using this tool: 

.