Baroness Jane Campbell
Patron of the National Disability Arts Collection and Archive
Baroness Jane Campbell has fought for equal rights for disabled people for as long as she can remember – from challenging special school segregation as a child, to public demonstrating and arrests, and now advocates for disabled people in the House of Lords. She’s been a leading voice of the disability community since the 1980s, driven by a fierce passion for equality and human rights, but most importantly a love of her community and a hatred of injustice.
Jane was born in 1959, into a world which didn’t have a place for disabled people. She was diagnosed with Spinal Muscular Atrophy and given a life expectancy of two years. She survived due to the determination of her family that she’d live and prove the professionals wrong. No mainstream school would accept Jane and she was sent to a segregated special school where the academic curriculum wasn’t deemed necessary. She left at 16 with basic primary school capabilities. “I was an angry rebel when I was ten,” Jane says. “I was very aware of my exclusion and educational deprivation, even at that age. All we did was weave baskets and endless, needless physiotherapy. I was bored out of my mind repeating ‘why aren’t I doing the same as my sister?’”
“My education didn’t really start until I was 16 when I went to Hereward College.” This further education college was originally built for disabled students who’d been failed by the education system. In the 1970s the college was a breeding ground for significant disability activists who later became prominent figures in the disability civil rights movement – activists like Bert Massey, Nabil Shabang and Simon Brisington. “It was a hotbed for young, angry disabled people who refused to play by the oppressive medical model traditions. We were rebelling against our discrimination and social exclusion. We were articulate, we were bold, and most importantly, we had nothing to lose because we had no rights.”
Determined to prove herself, Jane graduated from university with a high degree and first-class master’s in political history. Despite this she couldn’t get a job. With over 100 job applications rejected, she realised it was down to her being a disabled person. Jane finally got an administrative job at a disability charity – only to be sacked because she couldn’t physically operate a manual typewriter. “That,” Jane recalls dryly, “was my wake-up call.”
Luckily, Jane was introduced to a group of other like-minded disabled people who were coming together across the UK to rebel against their social and economic exclusion. She heard Michael Oliver talking about the Social Model of Disability at a Movement rally. “Suddenly all the lightbulbs came on in my head; the penny dropped, and I innately knew what I needed to do. The rest is history. I became an apprentice in the disability movement where I soon learned how to organise a pressure group and most importantly to be proud of who I was. I no longer felt ashamed of my history. Disability wasn’t my problem; it was the problem of how society was organised – for able-bodied people only. I was out and proud.”
The movement began with sharing personal experiences with one another. “By talking to each other we soon understood the complex reasons why we were treated differently. Once disabled people understand the true nature of their oppression, they become emancipated. Very similar to the way women began to understand sexism in the 50s. The disability movement enabled us to break free from our second-class social status and fight back.”
It was a thrilling movement to be part of: “We had to fight our way into society – breaking down barriers as we went, which was very empowering, but also frustrating at how long it took for the public to understand and join our mission. The disability movement has always tried hard to accommodate each other’s differences and we made lifelong friendships. However, like every political movement, we had internal fights, but always worked them out between ourselves. Externally we were solid as rock. That was part of our success.”
The movement had liberated, charismatic leaders with vision, including Mike Oliver, Vic Finkelstein and Rachel Hurst. “Like women in the ‘60s burning the bra, we were demanding ‘Nothing about us without us’ and ‘Rights Not Charity’, which brought us to blows with some old traditional charities who were used to speaking on our behalf.
“Independent Living, was central to our empowerment. Transferring power and money from social services, in the form of direct payments, to the disabled person was a fundamental part of our revolution. We knew making our own decisions needed to be written into law and that’s how the Direct Payments Act came to be. The DDA underpinned by the DPA was essential for a rights-based solution to our exclusion instead of a medical/charitable one.
“Historically disabled people have been patronised and paternalised and it was hard to throw off the shackles of organisations there to ‘help’ but who weren’t listening. We had to take control of our own lives and we did this by preventing those without direct experience of disability joining as full members until we worked out who we were and what we wanted to achieve. Once through that phase we welcomed non-disabled allies. We followed a similar path to the women’s movement.”
What does making allies and building consensus look like in a growing civil rights movement? “You start by listening to each other – and I mean really listening – and valuing what each person can bring to the table. There is no hierarchy of rights. Through that comes a rich, diverse tapestry which makes for harmony and creativity – like a quilt of many colours.”
As the movement grew, and started gaining wins and recognition, Jane began working for the Greater London Council. She was busy developing a system which would create equality for everyone whatever their characteristics. In the mid-80s she formed the first register of Disability Equality Trainers, all of which were disabled people trained in the Social Model and how to embed it in the public and private sector.
In 2006, with the establishment of the Equality Act, the Government founded the Equality and Human Rights Commission and appointed Jane as Disability Committee Chair. “When legislation passes, it’s not going to change things overnight, but you gain certain rights, which disabled people can focus on developing and implementing.”
In 2007, Jane was awarded a life peerage and became an Independent Crossbencher in the House of Lords as Baroness Campbell of Surbiton.
“It was like walking into a Harry Potter version of Eton. No one other than Lords, Baronesses and doorkeepers may enter the debating Chamber during business hours. I had to challenge this 1730 rule, allowing me to bring my PA in with me to assist. It took two years for this reasonable adjustment to be agreed.
“I’m immensely privileged and thankful to be amongst the best minds in the country on a whole range of topics, scrutinising and amending legislation, which was spellbinding, though daunting. I realised how little they knew about life for the UK’s 12.5 million disabled people. Many had never had a decent conversation with a disabled person. I could really contribute and they were largely thankful to learn.
“I needed to utilise the skills I used in disability equality training. The exchange was very useful in creating an equal relationship of mutual exchange – we had something of great worth to give to one another, creating a more equal working environment.”
Despite her high-status, Jane makes sure she stays in touch with grassroots disabled people and current campaigns. “I love disabled people of all shapes and sizes, they’re my family and I make sure I spend as much time as possible, involving my community in what I do. I couldn’t do my job without the many voices of disabled people to guide me.”
Jane’s focus now is reclaiming independent living. “This is at the heart of the rights we fought for in the ‘80s. Anti-discrimination legislation along with the Direct Payments Act are fundamental to our liberation. I have been living and breathing this stuff since university and I don’t see a reason to stop.”
Jane offers advice for the next generation of disabled change-makers: “You have a right to be a full member of society. You have a right to be included in everything. If you find you’re not wanted or invited in, you must fight to enter. Unfortunately, there’ll always be those who don’t want us included because we remind them of their own mortality and fear of disempowerment or they simply cannot be bothered to change their ways. It’s not fair, but just get over it. We must never go back into the closet. If you want to feel comfortable in the world you’re in, you’ve got to be prepared to fight for your equal slice of cake. It’s not easy and no one is going to do it for you. But that’s life for most people – it’s just a bit harder for us.”
“You have to work hard, you’ve got to earn your stripes and fully understand and support the Disabled People’s Movement to have real influence – understand your past and change your future. I was a radical. I demonstrated across Westminster Bridge, refused to move and got arrested. Without such peaceful demonstrations, we would never have gained our visibility.”
More from the Power 100
Simone StonesSenior Medical Writer and Patient AdvocateSimon Stones is an Award-Winning Senior Medical Writer and International Patient Advocate. In 2023, he was awarded the inaugural Rising Star Award by the International Society for Medical Publication...
Maria Grazia ZeddaSenior Equality Diversity and Inclusion (EDI) ManagerMaria was a Top 100 Disability Influencer in 2022 and 2019 for the public sector and her work has been recognised for many years from being a disabled entrepreneur, trainer and public speaker. She...
Suzanne Bull MBECEO, Attitude is EverythingI’m the Founder of Attitude is Everything, having previously been its first Project Manager and CEO. Attitude is Everything connect disabled people with the music and live event industries to improve access together. I'm...