Baroness Jane Campbell of Surbiton

Disability rights campaigner Jane Campbell, Baroness Campbell of Surbiton, was conferred Honorary Doctor of the University at the University of Sussex’s Summer Graduation, 2024.

Jane Campbell, Baroness Campbell of Surbiton – and a Sussex alumna, is thrilled to at last be coming to summer graduation to be awarded an honorary degree.

She was due to attend five years ago but fell dangerously ill with a twisted bowel that required high-risk surgery. 

The fact that she pulled through and was able to return to tirelessly campaigning for disability rights surprised everyone except her.

“I have had several near-death experiences throughout my life, and I have a psychological belief that I am completely invincible and that nothing will kill me,” she says, as we chat in the flower-filled garden of her bungalow.

It could almost be a statement of fact. Born with a rare, neurological condition – spinal muscular atrophy – the crossbench House of Lords peer was not expected to reach her second birthday.

She is now 65 and, although her condition requires complete physical dependence on helpful humans and an array of healthcare equipment, she is far from ready to say any goodbyes.  

"Outspoken"

“People say to me I could not live like you. But why when I have all this? I love my machines and tubes, which give me a good life, and my wheels take me wherever I wish to go. Thankfully, technology is keeping up with my changing needs and continues to liberate me. What’s not to like?” 

She adds: “When I see some of my older colleagues hobbling along corridors [in Parliament] I say, ‘You really need to get a mobility scooter because then you might get to your meeting on time!’ I’ve always been outspoken.”

Over the years, Jane has fought for human rights with passion and conviction. She was a commissioner on both the Disability Rights Commission and Equality and Human Rights Commission. She serves on the board of the Civil Liberties Trust, is patron of several disability rights charities and president of the Scott Morgan Foundation – a world leading research charity dedicated to liberating disabled people's capabilities through technology.

A self-confessed “born organiser”, with an authentic charm and a devilish sense of humour, Jane points out that she is who she is because of her disabilities, not despite them.

But she credits the University of Sussex, where she studied for a Masters in Political History in the 1980s, for instilling in her the importance of academic rigour and igniting her “progressive, campaigning spirit”.

Obstacles

Interested in civil rights leaders and movements, Jane wrote her dissertation about Sylvia Pankhurst, who was expelled by her mother, Emmeline, from the Women’s Social and Political Union for being a “radical socialist”. This led her to London’s East End to organise working women to campaign for the vote. 

“At times I felt I was a reincarnation of Sylvia Pankhurst,” says Jane. “She inspired me to look beyond the central figures and think about the grassroots foot soldiers who provide the force of numbers and do most of the hard work.”

Jane chose Sussex for her Masters because it offered an interesting history course, and unlike most universities at the time, it had an accommodation block – Kulukundis House – specifically for students with physical disabilities. 

Jane remembers: “They engaged personal assistants from 6pm until 10am to support disabled students with their evening and morning routines. The rest of the time we were encouraged to get support from fellow students.

“The campus design meant the majority of ground floor buildings were accessible, including the Library – albeit via a circuitous route.”

However, when Jane joined the University’s feminist forum, she discovered that physical access was not the only obstacle she faced.

“The women decided to change the meeting place to an inaccessible venue upstairs. When I objected, they said they could come to me at Kulukundis House now and then – but I said that wasn’t equality for all women. They were not representing women’s rights, only some women’s rights. It was my Sylvia Pankhurst moment!” 

“Inclusion for all"

Finding work after university proved to be equally challenging for Jane.  She reluctantly took a research job in a charity for disabled people and realised she was “the token disabled person”. She was soon sacked and told she was unemployable because she could only type with one finger and was therefore “too slow”.

But her life was to take a dramatic turn.

She met a fellow Sussex alumna and disability campaigner, Frances Hasler, who introduced her to sociologist and disability rights activist Dr Mike Oliver at a conference. Mike gave a lecture revealing the difference between the traditional medical model of disability and his new idea – the social model.

The first cites the disabled person as the problem to be fixed or treated differently, with separate services away from the mainstream community. The second shifts the focus to the State and society to remove unnecessary barriers that prevent disabled people from actively participating alongside everyone else. 

“Inclusion for all!” exclaims Jane. “It was like I had discovered the Holy Grail. Suddenly, everything made sense. The social model completely transformed my life. I was no longer the problem to be dealt with, but society was. I once hated disabled people and therefore, deep-down, my own shame. But from that day, I fell in love with their differences and mine.”

Arrested

She signed up to the Disability Rights Movement and did her apprenticeship. Throughout the 1980s and 1990s the movement snowballed. Demonstrations went from small parliamentary lobbies to well-orchestrated sit-ins. 

“Electric wheelchair users would blockade Westminster Bridge,” she remembers. “The first time the police didn’t know whether to pat us on the head or arrest us! 

“When they eventually did try to arrest us, it was farcical as they discovered that neither their vehicles nor the local police station were accessible to us. We were marched to a hotel down the road, given cups of tea, and then told to s*d off. Of course, we said no. We wanted the right to be arrested!”

The campaigning continues.

Jane has also frequently spoken out against assisted dying and took part in a BBC documentary, Better off Dead, with actor Liz Carr, looking at the debate from a disabled perspective. 

As founder of the Not Dead Yet network, she explains: “Disabled people don’t campaign for assisted dying. It’s another form of euthanasia and people are sleepwalking into it. What we need to do is sort out end-of-life support and palliative care. Then people wouldn’t be so afraid of being a burden on their families and dying in pain.”

In 2006 she was appointed a Dame Commander of the Order of the British Empire and in 2007 a life peer. This gave her access to the corridors of power and the means to influence the laws from within and move things forward.  

Jane was among those working through the night to get the bill ordering compensation for those who had received infected blood transfusions over the line before the government went into recess prior to the election. 

She admits she has a personal interest. Her first husband, Graham Ingleson, was a haemophiliac. He was diagnosed with HIV six weeks before their wedding and died from Aids in 1993. She says it was the only time in her life when she felt suicidal.

"It's all out there if you want it"

She married again in 2000 to Roger Symes, a shipping businessman. He was smitten after hearing her give a speech. “He was the first person in my grief who could make me truly laugh.” 

The art of persuasion is her gift – honed during her childhood years of encouraging friends to push her wheelchair so she could join in their games. It has paid dividends in politics “…where people have a load of vested and competing interests, and you have to make sure that your interests become their interests”.

She is close to her older sister, Sharon, who entertained them both in childhood with imaginative games and dressing up. And she has great respect for her remarkable mother,  “who went against the grain to treat her daughters exactly the same”. 

Jane’s father, who was charismatic and adventurous (and tragically died in a road accident “driving too fast”) was the one who instilled in her a belief she could do anything if she really wanted to. It’s advice she passes on to those who doubt their own agency.

“It’s all out there if you want it and you have as much right to have a go as anyone else.  All of us have our own power. We just need to learn how to use it in a good way.”