Locked-in syndrome man in court bid for right to die

I’ve done my fair share of harrowing interviews over the years, writes Channel 4 News presenter Cathy Newman – the man whose daughter was killed by a stalker, the prostitute recounting her slide from middle class prosperity into a life of drug abuse and the victim of gang rape.

But nothing had prepared me for the overwhelming sense of despair and hopelessness of Tony Nicklinson‘s life.

Seven years ago he was paralysed by a stroke but his mind was unharmed. He is as such a victim of “locked-in syndrome”, and tomorrow he will go to the high court to ask to be allowed to die.

Whereas past right-to-die cases have dealt with the law on assisted suicide, Mr Nicklinson is fundamentally challenging the law on murder. Because he’s so severely disabled, he can’t take his own life but needs someone else to do it for him. The only way that would be legal is to claim that death is, for him, an “absolute necessity”.

Interview like no other

He agreed to do an interview with me – though this is an interview like no other. He communicates by blinking at letters Jane, his wife of 26 years holds up, or by using a computer which follows his eye movements.

I’d sent him some questions by email so he could begin the laborious process of answering them letter by letter before we met.

I went to his house in Chippenham this morning, and at first the interview progressed much as I’d expected. I voiced the questions and he then activated his pre-prepared answers. If I’m honest it all felt a bit staged.

Watch again on 4oD: Let Our Dad Die

Inside his head

But then something extraordinary happened. Again with a blink and a tilt of his head – his wife has become expert at interpreting every subtle shift in the very limited array of facial movements at his disposal – he indicated he wanted to talk some more.

His wife held up a board with the alphabet on, and letter by painstaking letter, he told me what was going on inside his head.

As he blinked out each letter of his replies, tears rolled down his face. And as he ‘spoke’, I felt myself begin to cry too.

His wonderful memories of his life overseas when he was a fit, handsome, rugby-loving businessman with a penchant for extreme sports; his impatience with the pro-lifers who have no idea of the hourly physical indignities and lonely frustrations of his plight; his determination to kill himself – by starvation if necessary – if the high court fails to act; and his absolute conviction that nothing will change his mind – not even his two beautiful daughters and loyal, patient, loving wife.

As he blinked out each letter of his replies, tears rolled down his face. I asked him repeatedly if he wanted to stop the interview but by a slight incline of his head he, and his wife, confirmed he wanted to continue, their desperation to communicate their sense of grief and loss overcoming their distress. And as he “spoke”, I felt myself begin to cry too.

I spent two and a half hours with the Nicklinsons. The longest, saddest interview I’ve ever done.

Dispatches focuses on Tony Nicklinson’s life tonight at 8pm, following Channel 4 News.