Lady Campbell’s single-mindedness has made her one of the most influential figures in UK disability rights, from her origins as a grassroots activist stopping traffic by parking her wheelchair on London’s Westminster Bridge Road, to her current role as a crossbench peer.
Yet her resolve was recently tested when she spotted a protest against the government’s scrapping of the independent living fund (ILF) on her way into the House of Lords. “I suddenly saw wheelchair users in the road, and I was immediately transported back 20 years … The desire to say ‘sod it’ and get in the road [because] ‘hey, this is what it’s about’ was very strong; it took something to come in here [the Lords] and take a deep breath and say, ‘I’m going to negotiate’, because you need both [negotiation and activism].”
ane Campbell’s work now involves more debate than demonstration. As well as the campaign to save the £320m ILF programme that funds 18,000 disabled people’s community-based care, which was axed last week, she has spoken in the Lords about the devastating impact of austerity on disabled people ahead of the £12bn of welfare cuts expected to be outlined in Wednesday’s budget. She has also argued against the assisted dying bill, saying the proposal devalues disabled people’s lives.
This week, in recognition of her pioneering equality work, social justice thinktank the Bevan Foundation honoured her with a lifetime achievement award.
Campbell, 56, who was ennobled in 2006, has the degenerative condition spinal muscular atrophy and uses a ventilator to help her breathe. She helped campaign for the Disability Discrimination Act 1995 and the Community Care (Direct Payments) Act 1996, the latter giving people more control and choice over their support. Her high-profile roles include being a commissioner at the Equality and Human Rights Commission and as founding chair of the Social Care Institute for Excellence (SCIE).
Her methods may have changed, she says, but not her message. “I am the radical campaigner who does not bring a banner into the Lords, but says the very same things, just in a way they [politicians] can hear it.” She sees parallels between female emancipation and disability equality (she did her MA on suffragette Sylvia Pankhurst). “I used to be militant Emmeline Pankhurst and I am now Millicent Fawcett,” she says.
Her recent ILF campaign included defending it as “a beacon of good practice” and securing a Lords debate on the issue. Now, the standalone fund is being devolved to councils, with widespread concerns (supported by research) about the impact on recipients and the chaotic transition to cash-strapped local councils that are not obliged to ringfence the money.
Campbell warns: “In three or four years, [imagine] when you’ve got a group of people being rehoused or put back in institutions, or back at home, unemployment goes up as families have to give up work to care for their dependents … I say protect the money, don’t lose it through local authorities’ desperation to balance the books.”
Having lost the ILF battle, she is focused on how to mitigate the impact of its closure. At a recent meeting with new care minister Alistair Burt, she says that he assured her “he would keep an eye on this … but there is a lot of work and a long way to go before I am satisfied”. She wants an in-depth cost-benefit analysis of independent living, including potential job losses among carers funded by ILF. (Her own five personal assistants are funded by direct payments – funding that come straight from council social care budgets to anyone who needs support to spend on their care as they see fit.) Unfortunately, she says, politics today is “very knee-jerk”, focusing on “an economics analysis of dependency” not “a cost-benefit analysis of independence”. She asks, rhetorically: “Which one will bear the best fruit to enable us to have a healthy moral society?”
She also questions the morality of the assisted dying bill, which is due to be debated in the Commons in September. She is founder of Not Dead Yet UK, a network opposing “the legalised killing of disabled people”. Campbell believes assisted dying devalues disabled people’s existence and says the distinction between terminal illness and disability is a myth (the bill’s supporters say the law is only for terminally ill adults with six months or less to live). Over the years, she adds, doctors have diagnosed her as terminally ill several times.
She sees the assisted dying debate as part of a bigger equality rights picture. “We have [social care] infrastructure and support falling apart, hate crime has gone up, the health service is struggling – do you really think this is the right time to be bringing a bill saying, ‘OK, it’s fine to end it all’?”
Campbell contrasts today’s Tory government unfavourably with previous Conservative administrations that enacted disability discrimination and direct payment laws. She recalls: “It was collaborative … we knew there wasn’t much money but we wanted to use what was there for disabled people to be self-sufficient, and to work and to take their own responsibility as citizens.” Now, disabled people are “caught in the crossfire” as local and central government blame each other “for inadequacies in support”.
Stronger integration between, for example, government departments, would help, she says. “You cannot get to work unless you have social care support and you have a local authority that works with national government.” The other “important player”, she adds, “is the people who are the most experienced – disabled people”.
Campbell credits her supportive family for her confident and defiant character. At 11 months old, after her condition was diagnosed, her parents were told she would die within a year; when she talks of refusing to be defined by predictions, she speaks from experience. “Keep a healthy scepticism” is one of her mottos.
Career-wise, her watershed moment was a job as founding chair of the SCIE. “My first political appointment … the first time I crossed that divide, and took over the institute that used to be part of ‘the enemy’ – social services, before direct payments, used to be part of the problem,” she explains. Characteristically, in that establishment job interview, Campbell failed to suppress the language of the provocative radical. When her interviewers expressed astonishment at her social care knowledge, “I shouldn’t have done, but I said: ‘Yes, the cabbage has got a brain.’ I just thought I’d ballsed up the interview – but I got the job.”
Her biggest challenge as a peer, she says, was fighting for the right to make speeches in the Lords with her personal assistant’s support, because the chamber historically bans outsiders. Arguing her case using the anti-discrimination laws that she had lobbied for some 20 years earlier, she made parliamentary history. “It took two years, but I overturned an 18th-century standing order – that’s what you do when you’ve got your eye on the long game.”
Her long-term game plan means she is remarkably sanguine about the future. Despite welfare reforms, “it is not all doom and gloom”, she says. “You cannot put the genie back in the bottle; Pandora’s box is open and it will never be closed – we can never go back.” The ILF defeat has not dampened her campaigning zeal. “I do what I do because I am liberated and emancipated,” she says. “I have rights, I feel I have power. I’m not done yet.”
Lives South London.
Education Bedelsford School for the Handicapped; Hatfield Polytechnic, BA history; Sussex University, MA political history.
Career 2007-present: crossbench peer, House of Lords; 2001-05: executive chair, Social Care Institute for Excellence; 2000-07: commissioner, Disability Rights Commission; 1996-2012: co-director (then trustee), National Centre for Independent Living; 1991-95: co-chair British Council of Disabled People; 1988-94: various training roles at London boroughs; 1984-86: equal opportunities liaison officer, Greater London Council.
Honours Lifetime achievement award, Bevan Foundation; human rights award for lifetime achievement, Liberty.
Interests History, music, gardening.