Baroness Campbell: 'Disabled people are the best problem solvers’

We’ve been talking for a while when Baroness Campbell of Surbiton suddenly cuts to the chase, and leaves me speechless. “You can’t sit there and tell me that you don’t think it would be absolutely devastating to suddenly become me.”

She’s right. I can’t. I’m afraid of that thought and I can’t hold her gaze. How could anyone begin to cope, let alone do all the things she does?

“It wouldn’t be nice,” she says with a smile. “It would be devastating for a while. But we can never know where it will lead us.”

Baroness Campbell of Surbiton has spinal muscular atrophy, a wasting disease that means she uses an electrical wheelchair with a head support. An assistant stands by constantly “to act as my hands and feet”.

She speaks in short pulses of four or five words at a time, before pausing for air. At night she uses

a ventilator, and there is an emergency pack on the back of the chair. “Cute, isn’t it? Technology has kept up with me. If it hadn’t, I don’t think I would be here speaking to you.”

When Jane Campbell was born, the doctors said she would live for no more than a year. That was 53 years ago. Last Tuesday, she presented a Sunday Telegraph/Waitrose British Volunteer Awards, wowing everyone with a story about her days as a disability rights campaigner.

“Volunteers can be naughty,” she said, describing how she once led 100 wheelchair users on to Westminster Bridge and refused to move until they were promised that London buses would be modified. “So you see, volunteering can get you places!”

Now we are in a tiny room at the House of Lords, where Lady Campbell works herself to the point of exhaustion every day as a crossbencher. A fortnight ago, she became the first peer in more than 300 years to be allowed to take an assistant into the Chamber with her, to help with speeches.

And yet, when she last gave an interview to this newspaper nearly four years ago, she was expecting to be on a ventilator full time by now – if she was still alive at all. “It’s amazing that I’ve survived,” she says, before adding: “Today’s a bad day. You’ll notice I’m doing a lot of this [her head bobs] and rocking. But it’s not my fellow peers making me go to sleep. I was at your gig yesterday, then I came back here to the Lords and met with a load of bankers. So I’m paying for it today.”

The British Volunteer Awards winners found her inspiring, as one of the five judges, but the feeling was mutual. “The ceremony was very heartening. A lot of the winners were not connected with big charities, they were small groups or sometimes just individuals who thought, 'This is not good. I’m going to change it.’ ” She recognised kindred spirits. “The one thing that oppressed me for years was that other people thought they knew best about how I should live my life. Or not live it.”

She was brought up in a system that expected so little of her that she left school at 16 almost unable to read or write. But more enlightened lecturers helped her speed through O- and A-levels before going on to a degree, and ultimately an MA on Sylvia Pankhurst. “I did my exams verbally. It was not easy. I had to learn to hold a lot in my head.”

At this time of year, she is vulnerable to chest infections that threaten her life. Doctors have told her they may have to perform a tracheotomy next time she gets one. “We’re on a bit of a knife-edge. The likelihood of me being able to talk afterwards would be quite low. For me, that would be the big one. My brain is what got me out of segregation and exclusion. I like to communicate.”

Jane’s loving parents (her father was a heating engineer from London) taught her to believe that she could achieve great things. She co-founded the National Centre for Independent Living, led the Social Care Institute for Excellence and was made a Dame in 2003. Lady Campbell joined the House of Lords in 2007.

She uses voice recognition software to work there. “I talk to the computer. Think of all the speeches and amendments and papers we have to read and write. Words, words, words. That’s what this place is about.”

Clearly she loves it, though. “I find it fascinating, going head to head with guys and gals who have been to Eton or Cheltenham Ladies College or somewhere. I’m interested in how inept some of those people from privileged backgrounds are when it comes to coping with the world. I always say, disabled people make the best problem solvers.”

Surprisingly, she finds the Lords an enlightened place to work. “There are more disabled people here than in most day centres. I love being among older people who say they’re not disabled, they’re just a little elderly. And there they are: they can’t breathe, they can’t walk and they can hardly go to the toilet.”

Her most dramatic intervention came during the debate on assisted dying in 2009, when she moved several fellow peers to tears with a speech opposing a change in the law. “I am so scared rigid of that,” she says. “I don’t care what people want to do with their lives, individually, but to legitimise state-sanctioned killing just chills me. Don’t tell me they won’t do it. I know humans and their capabilities more than most, because I have been at their hands, as someone who is totally dependent on another human being to live.”

On one occasion, as she lay unconscious in hospital with an infection, the doctors decided she would not want to be resuscitated. She was only saved by the intervention of her husband, Roger. “That confirmed my worst fears. They didn’t know me, they just assumed. Most people don’t understand just what a prejudice they have about us.”

That’s when she challenges me. I would be afraid to live in her body. A fraction of her wit and will would do me fine, though.

“People simply will not believe me when I tell them that the best day of my life was when I was born like this,” she says, but how can that be true? “It has brought significant joy. It has brought significant experience. It has brought me to places that very few people will ever go.”

It has also brought her great pain and discomfort. “I have stopped breathing twice, and experienced drowning… but nothing will ever touch the pain of when I found out that my husband had HIV.”

Her first husband, Graham Ingleson, was a haemophiliac. Six weeks before their wedding, he discovered he had become HIV positive through a blood transfusion. “It taught me that severe disability is not the biggest tragedy in the world. Yet it is what people fear more than anything.”

But how could her condition have brought her joy? “Through seeing and experiencing things that you would never be able to. For instance, I have had over 500 people undress me and talk to me in the bath. Think of the stories! Because I have to trust them, I think they trust me. And I have an insatiable curiosity, I just want to know everything. Don’t you?”

She met her second husband, Roger Symes, through a mutual friend. “He came to hear me speak at a conference. He said it was magical. He started asking me out, but I thought he just wanted to be my friend.”

It took a year for the penny to drop. “We’ve hung out with each other ever since. We just get on. He makes me laugh.”

Roger used to be a merchant seaman, and now runs his own shipping company. Like her, he has a gift for pricking pomposity.

“Most people think I’m marvellous,” she says, drily. “I remember that when I spoke for the first time, as a child, people said: 'Isn’t she amazing? She can talk!’ My mother would say, 'I should bloody hope so. She’s five years old.’ You have to live with people putting you on a pedestal, if you do something beyond what they could ever do in that position. If I become inflated, Roger gets a big pointy needle and pops me.”

Listening to her talk about him, I think of all the husbands and wives, partners, friends and relatives of the winners at the awards ceremony. She stayed for a long time, sharing stories, and was struck by how many people became volunteers after receiving help themselves.

“It is very difficult to accept charity,” says this extraordinary woman. “I don’t want to be somebody’s good cause. It is much easier when people recognise that you have something to give them in return.”