I want to die with dignity – and I will fight for the right at the high court

Seven years ago I watched Tony Nicklinson weep after he lost his high court bid to challenge the law on assisted dying. Almost immediately after the verdict, he began to starve himself, and after six days of refusing food and water, he died from pneumonia.

Tony had tried to convince the court to let him end his life through medical assistance. The judge’s verdict, according to media reports, had left him “totally devastated”. After Tony died, I was asked to continue the legal fight for the right to die. I have to say that the thought of dying as he did terrifies me, and it is one of the main reasons I took it up. This is why I have applied to the high court for permission to review the law on assisted dying this week.

Prior to my car accident in 1990, I did not think much about dying. But my accident changed everything; it left me tetraplegic. Before then, I led a fairly normal life. I was a builder with two kids and I enjoyed visiting the theatre and cinema. I delighted in taking my son to our local running club where he later became a champion runner in Leeds.

For the past 30 years, I’ve been in a wheelchair, paralysed from the neck down, other than very limited movement in my right arm. I require 24-hour care by a team of seven carers who wash and feed me, and support me in my day-to-day functions. As soon as I wake up, I need medication for the pain. On a good day, I’m a three or four out of 10 (10 being the worst pain). A two is like a constant toothache that throbs and never goes away. Anything above six is agony where the physical pain is all-consuming. I’ve had many times when it’s been an eight, which is truly intolerable.

I believe in personal autonomy and the human right to be able to choose what happens to my body. And the public agrees with me. A poll published in March this year by My Death, My Decision, part of the Assisted Dying Coalition, shows that more than 90% of the UK public now supports assisted dying.

There is much that brings me joy in my life: playing with my chihuahua, Freddie, and taking him to the seaside; watching TV; being in the sun; spending time with my family. However, I long ago decided that if my pain and suffering became intolerable and I was no longer able to experience these small joys, then I would want the choice to end my life. I also want to have a peaceful ending at home or in a hospital here. It would give me the best feeling in the world to not have to worry.

But right now, I do worry. I’m afraid of having no choice other than starving myself to death like Tony did – and I’m also afraid that under current criminal charges, anyone who compassionately assisted me in ending my life would be at risk of 14 years’ imprisonment.

When I last appeared in the supreme court five years ago, the court rejected my case. At the time the ruling was clear – politicians should have another chance, and if they failed to change the law, I should return and challenge it again. And politicians did fail again, so now I must return to the courts.

In recent years, significant progress has been made on assisted dying. More progressive countries have given their citizens the right to die; the Royal College of Physicians recently ended its opposition to it, and now the Royal College of GPs and the British Medical Association will poll their members on it.

These developments show that the consensus on assisted dying is shifting. Together with Humanists UK, who are supporting me, and my lawyers at Leigh Day, I am now fighting a new case for the right to die for people who are of sound mind, but who are terminally ill or incurably suffering.

Those against assisted dying say a law may devalue life for disabled people. As a disabled person, I find this offensive. Every person’s disability is different – and some might not be able to live with pain. Giving me this right won’t take away others’ rights. The issue is also not solved, as some insist, through palliative care: this option has not worked for me.

In an intelligent country such as ours, I am sure our lawmakers can implement robust safeguards to ensure that the law is not misused, and that it strikes a balance between giving individuals such as me the choice, while also protecting those who may feel at risk.

What we need in this debate is not sympathy, but compassion and respect. I remember thinking how awful it was for our government to let Tony die the way he did. He died begging for help and his desperate pleas were ignored. I now face a similar tragic predicament. This treatment of our most vulnerable is cruel and unjustifiable. As a society, we must pledge to do better.