That is a question I ask myself every time I hear someone campaigning for a change in the law on assisted suicide. Do they want everyone to have the right to be assisted to die when life feels too hard to bear? “Never”, they are always at pains to point out, “any change in the law will only apply to the “terminally ill”.
This is a special category of people that only exists in the minds of people who believe they know what is best for us. Usually, they claim it will only affect those with less than six months to live. It will release them from pain, indignity and feelings of being a burden. Advocates for a change in the law believe safeguards will protect disabled people, who must continue to suffer pain, indignity and feeling a burden unless they find kindly doctors willing to categorise them as having less than six months to live.
This nonsense is trotted out every time a so-called “Assisted Dying” Bill comes before parliament. Why? Because disabled people are never seriously consulted before the Bills are drafted. We are experts in pain, indignity and being made to feel a burden. Surely our views should be paramount. Sadly, they never are. We are patronisingly told its not about us. Our lived experience tells us daily that is not true.
Over 20 years ago, I heard Lord Joffe on the radio speaking about his Private Members Bill (an early assisted suicide bill before the UK Parliament). After he had spoken, the presenter turned to a Bishop to provide the counter argument. Neither speaker was a disabled or terminally ill person.
That is when I realised disabled people had to speak out. For me this is not an ethical or regilious issue, it is about my life and that of all terminally ill and disabled people. We must campaign against those falsely representing us. We want help to live – not to die!
That is how I came to establish Not Dead Yet UK, a network of disabled people campaigning against any relaxation in the law on assisted suicide. Inspiration and support came from Not Dead Yet founded in the United States in 1996. We represent the collective voice of thousands who are terrified of a change in the law.
Sadly, two decades and several failed attempts later, the appetite to help us to die is undiminished. Kim Leadbetter MP’s Terminally Ill Adults (End of Life) Bill will be debated in Parliament on 29th November 2024. This is my tenth time of pleading with parliamentarians to listen to our fears. She claims her Bill contains the “strictest protections”. It does not. Nevertheless, she hopes to convince MPs to back the Bill and pass it into law.
No doubt some MPs will know someone who endured pain, indignity or feelings of being a burden. Many of their constituents will know such a person. Against this background, assisted suicide appears to be a simple solution. The more complex alternative of better health and social care support is brushed aside.
Rather than rush to speed through a populist change in the law, MPs must look closely at the few countries which have legalised assisted suicide. In each case, initial restrictive laws have subsequently been relaxed to extend their reach. The “protections” are seen as obstacles, restricting individual choices and rights for those outside the original criteria. That is why this Bill is so dangerous to those of us who rely upon health and social care support. Our “right to die” will replace our “right to live with support”, be it from family, friends, the NHS or local authority.
We know already that terminally ill and disabled people experience poor quality and inadequate health and social care services. That is what makes lives unbearable. Wes Streeting, the Minister for Health and Social Care, has confirmed that both services.
No wonder the public fear what may happen to them if they become frail, ill or incapacitated for any reason. No wonder they think suicide with a doctor’s approval might be better than living without sufficient care and support. Its supporters claim this Bill is all about “choice”. The only “choice” I see is to endure poor care or die early. In the current climate of fear, people want a solution. I am here to tell you this Bill is not it.
Terminally ill and disabled people are expert in their conditions and often brilliant problem solvers. We do not all sit around hoping for an early death, we organize and fight for support to live with dignity and equality. Why is it so hard to hear us? Why is it so hard for the Government to invest in our lives? To fix broken health and social care services, so we do not feel a burden. To provide universal palliative care so we all can be confident it will be available if needed?
The government could start by enforcing an existing law not yet fully implemented – the Disability Discrimination Act 1995 (since renamed the Equality Act}. If we could access society with purpose and independence then, maybe, the deafening cries to help us to die would quieten down. Help us to live, not to die.
MPs, I urge you to vote against this Bill. If you are inclined to support it, only do so if you are 100% confident no person will die who could have lived with the right support. There can be no room for doubt. Our lives are in your hands.
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