On the fallacies and follies of ‘diagnosing death’ and ‘assessing quality of life’.
Here is The Guardian -
'I'm bossy. I'm ambitious. I love ideas. And I love life'"Let's go into my study," says Lady Campbell, the moment I arrive at her suburban bungalow. "This is where I do all my plotting."
Jane Campbell's plot is to turn our assumptions about disability upside down. The life peer has spinal muscular atrophy, a degenerative condition which means she uses a wheelchair and is increasingly reliant on a ventilator to breath. Three years ago, doctors put a "Do Not Resuscitate" notice on her medical records, considering her life not worth living. This small, sunny garden room is full of photographs of her campaigning against such assumptions: there's the younger Campbell under a "Rights Not Charity" banner ("My first big demo. I took hundreds of wheelchair users on to Westminster Bridge, stopping the traffic. Here were the poor disabled breaking the law - the police couldn't get their heads around it!"), and there's Campbell in 2004, holding a "Not Dead Yet" placard. "Even friends say to me, 'I couldn't live like you, I'd rather be dead.' I still get people coming up to me in the street and telling me how wonderful I am going out to the shops." Campbell has little time for shopping. "I'm too busy changing the world," she quips.
Next to the photos, there's a grim etching of a hunched man, a gift from her first driver. "He'd served 16 years for armed robbery - I gave him his first job," she boasts. "Best driver I've ever had. Drove for the Richardsons [contemporaries of the Krays] - used to drive their getaway cars. Then I had him! Isn't that wonderful? Because of my situation, I've met the most interesting people, far more interesting than you." She's inviting me to be jealous of her, a woman who has very little use of her limbs.
Campbell, recently made Baroness of Surbiton, is cheery, having just celebrated her 50th birthday - a milestone she was told she'd never reach. And this week in the House of Lords, her powerful speech was credited with squashing an amendment to the coroners and justice bill which would have granted those accompanying people going abroad for assisted suicide immunity from prosecution. Does she feel victorious? "No. I just thought they had to hear the truth."
It's all about giving another perspective, she says. "Some of the debaters talked about how terrible it must be to have someone else take you to the toilet. That's my life, mate! And I hate the term 'vulnerable people'. It sets the image up before they find out what you're really like. Really I'm bossy, I'm ambitious and have ants in my pants, and am excited about things and people. I love ideas. I love life."
When she was born, the doctors gave her a year to live. That threat of death at any moment has been with her throughout her life, giving others the excuse not to invest in her. "I was very young when I realised that things weren't right in the world. I went to a special school, segregated. In those days, you didn't educate disabled children very much.
"I left school with no qualifications, hardly able to read and write. I was 16. But I was quite intelligent. I was very lucky - a college for disabled students had just been opened in Coventry. I did six O-levels and three A-levels in three years. That's how hungry I was."
She met her husband Graham Ingleson in Coventry; they married when she was 27. He had haemophilia, and at that time young people with his condition were not considered for mainstream education. He contracted HIV from a blood transfusion; they found out six weeks before the wedding. "He was wonderful, my rock in life. It's now 15 years since he died," says Campbell. "I've had an extraordinary life."
She often ends her thoughts on such a positive note. It reminds me of something, but I'm not sure what. Then I remember: it is the language of the obituary writer. It's as if she's writing her own.
From Coventry, she went to Hatfield Polytechnic and on to an MA on Sylvia Pankhurst at Sussex. She's always been as passionate about women's as disabled rights, and believes this is reflected in her work as commissioner of the Equality Rights Commission. "I feel that our movement, the disability movement, is an emancipation agenda. I see it like apartheid. It's not just ramps and access, it's deeply rooted in attitudes."
There is, however, one important difference: "Most of us will have to face up to terminal illness before we die," she says. "You can hate women or hate black people, but you can't hate what you might one day become. It's more complex and dangerous. They know, deep down inside, they're going to become that which they loathe and fear."
After Graham, she met Roger Symes. They live together in Tolworth, greater London. "He's my second husband," she says mischievously, used to having people presume she's never had a husband at all. "He saw me making a speech and thought, 'There's a bossy redhead. I'll take her out for a drink.' My speeches have an effect on people."
Her loves are Roger, books, music (she's a Nick Cave fan) and her garden. She takes me on a tour, pointing in through the French windows to the bed where she lies when she needs her ventilator, from which she can admire the view. And then there's another of those extraordinary moments, when she paints a scene in that room that confounds preconceptions. "I can't have children, but I have an eight year-old-girl living next door who comes round all the time. If I'm on my ventilator, that's what she sees, and it's just Jane. She sits on the bed and gets me a cup of tea. She loves the idea that she feels important, as well as me. I make sure that severe disability is normalised."
Campbell has few secrets. "I want to be open with the world that next year, or the year after, I'll probably be on a ventilator full-time. That I won't be able to swallow." But her openness only goes so far; like most disabled people, she sometimes disguises the true extent of her disability. In the Lords debate, she began by informing the house that "the usual channels" might have to be invoked, and another member finished the speech for her. Such channels have never been allowed before. "If I'd made that demand before entry, they might have thought, it's just not worth it."
Her impact has been profound. When she said in the debate, "If I should ever seek death - there are several times when my progressive condition challenges me - I want to guarantee that you are there supporting my continued life and its value. The last thing I want is for you to give up on me, especially when I need you most," a rare thing occurred: the noble lords were moved.
Would she ever consider ending her life? Just last year, she says, she became dangerously ill with septicemia. "I could have stopped. But I looked at my husband's face. I couldn't do that to him." But what about those people who don't have anyone? It's our role, as a caring society, to be that someone, she says.
Towards the end of our time together, she asks if I'll consider writing her autobiography. She wants to do this because she's had such an extraordinary life - expected to die young, living so fully. So what would I write up as her legacy? "I'd like to think I helped people to think again." Adding, as if from nowhere: "Life is sweet."