To me, assisted dying is not an ethical or religious issue – it is about my right to live

The vote on assisted dying is dangerous to those of us who rely upon health and social care support, writes Baroness Jane Campbell, founder of Not Dead Yet UK. Why is it so hard to hear us?

Advocates for a change in the law around assisted dying believe safeguards will protect disabled people, who must continue to suffer pain, indignity and feeling a burden – unless they find kind 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 such 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 it’s not about us. But our lived experience tells us daily that is not true.

Over 20 years ago, I heard Joel Joffe on the radio speaking about his private members’ bill (an early assisted suicide bill before parliament). That is when I realised disabled people had to speak out.

For me, this is not an ethical or religious 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.

Kim Ledbetter claims her bill contains the “strictest protections”. It does not. Nevertheless, she hopes to convince MPs – some of whom might have direct experience with or represent those who do have disabilities – to back the bill and pass it into law.

Against this background, assisted suicide appears to be a merciful, simple solution. The more complex alternative of better health and social care support is brushed aside.

In the meantime, no disabled people’s organisations, nor disability charities, are in favour of a change in the law. Some, like Disability Rights UK, have changed from being neutral to actively campaigning against any change to current legislation.

Rather than rush to speed through a populist change in the law on Friday, MPs should 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 – in some instances, with terrifying consequences.

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 council.

We know already that terminally ill and disabled people experience poor quality and inadequate health and social care services – Wes Streeting has confirmed that is the case with both services. And it is that that makes lives unbearable. 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.

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 – the 2010 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.

If MPs are inclined to support this bill, they should only do so if they are 100 per cent confident no person will die who could have otherwise lived with the right support. There can be no room for doubt. Our lives are in your hands.

Baroness Campbell of Surbiton DBE is a crossbench peer in the House of Lords and founder of Not Dead Yet UK