Opinion on assisted dying is deeply divided across the population, as reflected by the parliamentary vote on the second reading of the Bill on 29th November. We as Disabled people also hold widely differing views.
At Disability Rights UK, we oppose the Bill, alongside other Disabled people’s led organisations. Our trustees recently reviewed our position and moved from neutral to against. This shift was heavily influenced by our experience of COVID-19, where 60% of deaths were of Disabled people and where there was active devaluing and de-prioritisation of our lives.
Another factor that influenced the change in position was the continued significant underfunding of public services, in particular social care, which exists to give hundreds of thousands of Disabled people the everyday care and support we need to live full and dignified lives. In reality, this underfunding denies many of us this basic right. The goal of Disability Rights UK is to create an inclusive society for Disabled people and our view is that the Bill does not move us in this direction.
We live in a society permeated by deeply rooted negativity towards being Disabled and beset by profound inequalities in life chances. A society that is struggling with underfunded and inadequate health and care services. In these circumstances, we do not believe that giving the right to choose an assisted death is safe for individuals or that it moves us towards an inclusive society.
There are 16 million Disabled people in the UK, 24% of the population. We come from a range of backgrounds and have different life experiences; however, we face many shared barriers to full inclusion. We experience negative attitudes, discriminatory policies and practices and inaccessible information and environments. We are often excluded from political and policy discussions about things that affect us, and our personal preferences are often ignored or overlooked.
Devaluing of our lives
So often, our impairments or health conditions are viewed as a deficit or burden by others, and sometimes even by ourselves. Being non-Disabled is viewed as the gold standard and being Disabled is viewed as ‘lesser’. This ableism is deeply entrenched within our society. It manifests itself in negative attitudes towards Disabled people, which most of us encounter from friends, family and strangers.
It also manifests itself in the way society is organised. We saw this clearly during the COVID-19 pandemic, when Government failed to protect and support Disabled people, leading to disproportionate deaths including those of younger Disabled people. We saw the wrongful use of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices. We saw Disabled people being deprioritised for critical care. Can we trust decisions on assisted dying, when they are made within the context of deep-rooted ableism and discriminatory attitudes, policies and practices?
Systemic inequalities
Disabled people disproportionately live in poverty, experience lower educational attainment, are more likely to be unemployed or in low paid, insecure jobs and often live in inaccessible homes. These widespread inequalities mean that many Disabled people are struggling to survive with mental and physical impairments and health conditions, with the concept of choice often being a far removed one.
In 2017, The UN found the UK Government guilty of ‘grave and systemic violations against Disabled people’, particularly in regard to the lack of support for independent living within the community and failure to ensure a decent standard of living. In addition to inequalities affecting Disabled people, the UK population as a whole experiences profound health inequalities, with life expectancy and healthy life years being much worse for those living in the poorest places. Can we trust decisions on assisted dying when inequalities, including health inequalities for Disabled and non-Disabled people, are so profound?
Inadequate health and care services
Many Disabled people are today struggling to access health and social care services. The decline of public services during austerity, the impact of the COVID-19 pandemic on healthcare and the ongoing underfunding of public services under the new Labour Government deprive Disabled people of essential health and social care support.
It is well documented that millions of us are waiting too long for healthcare, that thousands of us are being denied social care or having our support cut and that 100,000 people are not able to access palliative care. Millions of us want the best possible support to live a full life and to experience a good death, yet every day the state lets us down. Can we trust decisions on assisted dying within the context of grossly inadequate public services?
Conflicting NHS cultures
The NHS is a service that helps us to live, by providing treatment or cure, or by helping us to manage our condition. Throughout our lives, we need to be confident that the NHS is there to enable us to live. Can the culture of promoting health and wellbeing sit alongside a duty to actively assist people to die? Could a right to assisted death mean that less effort and resources are put into giving us the best possible support to enable a pain-free, comfortable and compassionate death?
Whilst the right within the Bill is restricted to those with a terminal diagnosis, who are within six months of death, is it not likely that the cultural shift may result in patients and clinicians seeking to widen the right? This is certainly what has happened in countries that have already introduced assisted dying, such as Canada.
Insufficient safeguards
It is hard to see how any safeguards can give us watertight assurance. We will not know that the safeguards have broken down until it is too late. With what certainty can doctors predict the time of death? Can doctors really establish whether a request for assisted dying is a settled one, made without coercion? Can we be sure that ableism, inequality and lack of public services are not playing a part in the decision to request an assisted death? What evidence could a judge be shown that enables them to approve the request? Can the judge ask for more evidence to be produced? We are very familiar with miscarriages of justice. The recent infected blood and Post Office scandal inquiries show us the state is not as benevolent as we might wish. Let’s not add to this list.
An unjust spotlight
Millions of Disabled people want support to live our lives. We want access to the best healthcare, genuine support from social services, homes that are accessible and a society without attitudinal, institutional, information and environmental barriers. It is our everyday experience that we don’t live in an inclusive society with the support and services we need to flourish.
It feels hugely unjust to have the spotlight put on the right to die, when millions of us are being denied the right to live. Far too many of us who live with impairments and long-term health conditions have had to fight for our right to live, as those around us, including health practitioners, question the quality of our lives and de-prioritise our healthcare.
It is devastating for many of us to witness the focus on the right to die, when for hundreds of thousands of Disabled people, our right to live is routinely denied. Let’s put the focus on giving everyone the experience of a good life.
What is your view on the Assisted Dying Bill? Leave a comment on this feature or join the conversation to share your thoughts.
Fazilet Hadi is Head of Policy at Disability Rights UK. Email: [email protected] X: @DisRightsUK
Thank you, well said!