Connecting with disabled activists – building support based on compassion and evidence

 

I have recently joined the Dignity in Dying team to work with disabled activists and to communicate our case for change.

I experienced a spinal cord injury at the age of 7, and from that point onwards became a full-time wheelchair user with all of the barriers that can bring with it. Since graduating from university, I have worked with various disability organisations as well as dabbling with party politics. Through these experiences, I can see why providing greater patient choice at the end of life is more logical and compassionate than the current situation, and how with upfront safeguards and clear criteria a change in the law on assisted dying wouldn’t impact upon anyone else’s freedoms or rights.

Concerns raised by some disabled people who disagree with assisted dying are at odds with the evidence from places like Oregon, where assisted dying has been legal for the last fifteen years. However, it is important to understand that someone’s personal experience of disability and its barriers will, understandably, contribute to how they frame their concerns. As a campaigner and supporter of change, I try to take this on board when addressing people’s concerns.

 

Assisted dying is not the same as assisted suicide

 

It’s important to make clear that assisted dying and assisted suicide are not one and the same thing. In fact, they apply to different groups of people in very different circumstances.

Assisted dying is an end-of-life option, available only to those who are mentally competent and are medically recognised as dying (terminally ill). In the Assisted Dying Bill that has been recently tabled in the House of Lords, only those terminally ill and “reasonably expected to die within six months” would be eligible for an assisted death.

This is distinct from assisted suicide that is legal in some countries and can be chosen by people who are chronically ill or have a disability. Many people will have seen the highly publicised court cases taken by people such as Tony Nicklinson and Paul Lamb who later took on Tony’s case to legalise assisted suicide in the UK.

Neither of these men is terminally ill and whilst Dignity in Dying understands their position, we campaign only for a change in the law on assisted dying, for dying, mentally competent adults, not for an unfettered right to die for the non-dying.

It is understandable to see how the conflation of assisted dying with assisted suicide can alarm some disabled people. Repeated surveys have shown both the public and those who are disabled do support assisted dying for dying people and so it’s important for us to be clear and consistent about the terms used in this debate.

 

A slippery slope?

 

A common misconception is that legalising assisted dying will, in turn, lead to the legalisation of assisted suicide by default. This is termed the ‘slippery slope’ and some disabled people fear such a transition will occur unintentionally and without any checks and balances by expert professionals or democratic influences.

A relevant case study is to consider how the US state of Oregon’s Death with Dignity Act has progressed since being passed into law in 1997. Relevant because the current Assisted Dying Bill is similar to the Oregon act. Over the course of the last 15 years, the criteria have never been extended to apply to people who are chronically ill or have a disability. Nor has there been a shift in American public opinion, wanting further change.

Likewise, UK public opinion quickly trails off when being asked whether a doctor should be allowed to end the life of somebody with an incurable and painful illness from which they will not die; assisted suicide – only 45% as opposed to the 80% who agree with assisted dying. There is no political mandate, there is no significant public support and Oregon demonstrates what 15 years into legalising the choice of a dignified death looks like.

 

Safeguards that empower

 

Some disabled people are concerned about how rigorous the safeguards would be and whether they would continue to protect their freedom and individual value. They are right, any and all safeguards must be upfront and strictly defined in law, for policymakers, health professionals and the public to understand and abide by.

Within the current Assisted Dying Bill, the choice of an assisted death by a terminally ill person can be made by them alone, providing they are over the age of 18 and, importantly, found to be mentally competent to do so.

Additionally, two doctors must agree and sign a patient’s request.

As technical as the whole list of safeguards are to read, they are strictly defined rules and when combined with the fact that the patient has to be the one who gives themselves the life-ending medication, no one else, the entire process is in the sole control of the patient. The dying person would make a choice about how they wanted to die alongside a series of independent checks and balances that keep them, the health professionals, as well as family and friends safe and supported in what can only be a very difficult time for all involved.

These safeguards would empower those who are terminally ill with less than six months to live. They also empower everyone else in society, including disabled people. They do not even allow an assisted death to be an option available to anyone else. The criteria supports a small group of dying people’s right to choice, dignity and control over an inevitable process whilst at the same time, empowering everyone else’s gift of life and the right to live it to the fullest they can.

Those like me who advocate change have an obligation to answer understandable concerns. But ultimately unfounded fears about creating a duty to die should not impose a duty to suffer on the dying. Whether it applies to disabled or non-disabled people, society should not condone assisted suicide, but both disabled people and non-disabled people die and when this is inevitable and imminent they should be allowed greater choice over that process within upfront safeguards.

 

Over the next few weeks, the team at Dignity in Dying will be working together, alongside other disabled activists to create a new initiative aimed to highlighting the case for change and connecting with all disabled people, including the majority who currently support a change in the law.