Say No To Assisted Dying - Fazilet Hadi

At Disability Rights UK, our trustees reviewed our position on assisted dying, moving from being neutral to being against. This shift was heavily influenced by our experience of COVID, where almost 60% of deaths were of Disabled people, alongside active devaluing and de-prioritisation of our lives. Another factor that influenced the change in our position was the continued significant underfunding of public services, in particular social care, which is supposed to give hundreds of thousands of Disabled people the everyday care and support we need to live full and dignified lives.  

The aim of Disability Rights UK is to create an inclusive society for Disabled people - we don’t believe that the Bill moves us in this direction. Below I set out the key reasons for our opposition to the Bill. 

6 Reasons to oppose the Bill 

Devaluing of Our Lives 

So often, our impairments or health conditions are viewed as a deficit or burden by others, 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 wider society. It also shows itself institutionally, in the way society is organised. We saw this clearly during the COVID 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 Resuscitation 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 and, in these circumstances, the concept of choice is often far removed. In 2017 The UN found the UK Government guilty of “grave and systemic violations against Disabled people”, particularly regarding 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 working-class people and those living in the poorest places. Can we trust decisions on assisted dying when inequalities 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 pandemic on healthcare and the on-going 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 aren’t 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 6 months of death, isn’t it likely that the cultural shift will result in patients and clinicians seeking to widen these provisions? This is certainly what has happened in many countries that have already introduced assisted dying. Can we be confident that supporting life will continue to be the dominant NHS value, for older and Disabled people?  

Insufficient Safeguards 

No safeguards can give us watertight assurance. We won’t know that the safeguards haven’t worked 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 aren’t playing a part in the decision to request an assisted death? What evidence could a panel be shown that enables them to approve a request? Can the panel ask for more evidence to be produced or to talk to the person making the request? We are very familiar with miscarriages of justice. People wrongly receiving the death penalty, people being wrongly imprisoned, and the recent infected blood and Post Office scandal inquiries show us that the state is not as benevolent as we might be led to believe. Let’s not add to this list. 

Poor Parliamentary Process 

Making law on something as important as assisted dying should not be done through a Private Member’s Bill. This process doesn’t have the depth of consideration that would be given to a Government Bill. For example, there is no open 12-week consultation on the proposals, which seeks responses from the public. Instead, we have had no advance consideration of the Bill by government officials, a rushed parliamentary process with little time for debate, an inadequate and inaccessible consultation, a Bill Committee stacked with MPs in favour of the Bill and blatant hostility towards taking evidence from Disabled people.  

Conclusion 

Millions of Disabled people want support to live our lives. We want access to the best healthcare, meaningful support from social care services, homes that are accessible and a society without attitudinal, institutional, informational 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 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 health care.     

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 focus on giving people the care and support we need to live a good life.