This obituary for our late Board member, Debbie Jolly, is reprinted from the Disability News Service. ENIL is thankful to its author, John Pring.
Activists have paid tribute to Debbie Jolly, a central figure in the disabled people’s anti-cuts movement, a passionate advocate of the social model, and a researcher-activist who “brilliantly” exploited links between research and activism, who died last week.
One friend and former colleague described her as “a force for good and an exceptional champion of all disabled people”.
Her death has left many members of the disabled people’s anti-cuts movement shocked and devastated.
Jolly (pictured), who died after a short illness, was a co-founder of Disabled People Against Cuts (DPAC), and had worked over at least two decades at local, national and European levels to further the cause of disability rights.
Her death came just days after a report by the UN’s committee on the rights of persons with disabilities (CRPD)confirmed allegations of “grave or systematic violations” of disabled people’s human rights by the UK government.
Jolly, who lived in Leicestershire, had played a significant role in bringing those allegations to CRPD’s attention, and providing the evidence needed to prove those claims over several years.
She was a long-time board member of the European Network on Independent Living (ENIL), and also a member of the Academic Network of European Disability Experts (ANED), of the National Union of Journalists, and of the editorial board of the journal Disability and Society.
Despite her influence on the disabled people’s anti-cuts movement, Jolly shied away from the spotlight, and never sought media attention.
Friends and colleagues this week described how she combined anger at injustice, determination, joy and vibrancy, and said she was both “a warrior and tireless campaigner for disabled people’s human rights” and a generous, caring and supportive mentor of other disabled activists.
Linda Burnip, who had worked closely with Jolly for years as a fellow co-founder of DPAC, including on the complaint to the UN, said in a statement issued on behalf of DPAC’s steering group that disabled people had “lost a friend and advocate and a fighter for our movement”.
She said: “Debbie was one of the main people involved in initiating the UN inquiry into the UK’s grave and systematic violation of disabled people’s human rights, which will be a lasting testimony to her life and work.
“Debbie was a warrior and tireless campaigner for disabled people’s human rights and most of all she never wanted to be hailed as a heroine or praised by others for the work that she did.”
A DPAC colleague, Ellen Clifford, added: “The enormous hole she has left is testament to what a rare and amazing person she was.
“She never courted publicity or self-aggrandisement but believed in the collective struggle and was uncompromising in her commitment to the social model of disability.
“To those she valued she was also endlessly supportive and caring. Her belief in me gave me a rock that at many times I would have been lost without.”
But Clifford added: “However, she would want us not to mourn but to organise and to continue the fight that she dedicated her life to. And so, though it hurts, we have to go on.”
Another DPAC colleague, Bob Ellard, said Jolly was “an admired colleague and a truly great activist. But more than that she was a much-loved friend.
“She mentored me with great patience when I joined the disabled people’s activism community and she taught me so much.
“I will always cherish her memory and be thankful that I had the chance to know her.”
John McArdle, co-founder of DPAC’s Scottish sister organisation, Black Triangle, said: “It’s because of the work, love and dedication of women like Debbie that the world continues to carry on, so this generation of disabled people and those yet unborn will have a future and a hope.”
He said the UN report would stand as Jolly’s “last will and testament”.
Jamie Bolling, ENIL’s executive director, said Jolly would be “greatly missed” and was “much appreciated for her leadership skills and her straightforward messages on independent living”.
Jolly was employed by ENIL between 2007 and 2009 on a project promoting independent living across Europe, and had served on the ENIL board since 2013.
She was also active in ENIL’s Alliance Against Disability Cuts, pushing the European Parliament to counter the impact of austerity measures on disabled people, and was involved in ENIL’s project to promote independent living in Turkey, as well as working with Bulgaria’s centre for independent living.
Bolling said: “A strong believer in the user-led grassroots groups, she made sure ENIL is able to engage with and support disabled people active at the local level in their countries.”
And she said that the CRPD inquiry Jolly helped to spark would “hopefully help change the policy and practice not just in the UK, but will encourage other groups in Europe to take similar action”.
She added: “Debbie was in full force fighting the battle against institutionalization of disabled people, and for deinstitutionalization.
“Her research on independent living is greatly appreciated and will continue to be of relevance for years to come.”
The artist-activist Ann Whitehurst and academic and cultural critic Dr Paul Darke – co-founders of the disability arts organisation Outside Centre – met Jolly for the first time on the same day in 2007, when she was speaking about Rethinking Disability Representation in Museums and Art Galleries, a major piece of academic research she was working on.
Whitehurst and Darke worked on a short film of ENIL’s Freedom Drive in 2009, which Jolly was involved in organising, and which they say “stands as a testament to her work, her commitment and her internationalism”, as well as her passion.
Jolly also wrote the main essay for their photo-book about the London 2012 Paralympic Games, All Swim In The River Of Life And Lean Towards Salvation, which, they said, “made the book and totally outshone our (art) work for its (political) passion on disability”.
Darke said he and Whitehurst had met Jolly regularly for lunch in Wolverhampton over the last few years, “discussing life, liberty and the pursuit of happiness, all of which we agreed were intertwined and, as such, ever elusive”.
Darke said: “Ann and I will both miss Debbie greatly; not just her company but her ability to educate, to teach, to listen, to inspire a political passion, and to drink more tea than us at any one sitting.
“Debbie was one of the best and will be missed at a time when she is more needed than ever.
“Tears, words and emotional responses will never be enough to describe her contribution to us and many other individuals but sadly it is all one can muster at the loss of a great friend, mentor and supporter of disabled people, of me, of Ann and of disabled people across Europe.
“The future was indeed bright with Debbie and seems much gloomier without her to lead us to the light that is now gone.”
Whitehurst added: “I can’t bear to be without the intellectual stimulus and joy and vibrancy of her. We are beloved comrades, beloved friends.
“I will not think of Debbie in the past tense. In her spirit and her intellect she is the theory, the analysis, the resolve of DPAC.
“As long as it remains steadfast to upholding the political and social principle of full equality for all and the social model of disability, she will remain intellectually, passionately, alive through it.”
John Clarke met Jolly through his work as organiser of the Ontario Coalition Against Poverty (OCAP) in Canada, which itself was experiencing austerity-driven cuts to disabled people’s support.
He said: “Despite the disadvantage of her only ever appearing to us in the form of email messages, her fine qualities came through very clearly.
“Disabled people in the UK have faced austerity, abandonment and an accompanying assault on their dignity.
“Resistance is hard and despair all too easy but Debbie had within her the anger, the love, the determination and the political judgement that has enabled DPAC to ensure that disabled people have not just resisted austerity but have given a lead to others.
“In September, I was able to travel to London for the DPAC week of action, meet Debbie in person and entirely confirm the view of her I had already formed.
“We are so sad she has gone but so proud and grateful that Debbie Jolly lived. We’ll take her contribution with us into the struggles for justice that lie ahead.”
As well as her work with DPAC, ENIL, ANED and other organisations, Jolly leaves behind an impressive catalogue of academic and journalistic publications.
She studied at Leeds University’s hugely influential Centre for Disability Studies, under Professor Colin Barnes, at a time when the atmosphere at the centre was “very communal” and drenched in the idea of disability activism.
She received a post-graduate diploma in disability studies, and many of her subsequent articles can be read online on the centre’s website.
Barnes said Jolly was “not a theorist”, but a “strong advocate of social model thinking”, and was a “great loss to the disabled people’s movement”.
He paid tribute to her role in co-founding DPAC, which he said was “probably the most important organisation campaigning for disability rights in the UK”.
He said: “She wasn’t interested in being interviewed or being a major personality; she found that to be unnecessary.”
Dr Alan Roulstone, former professor of disability studies at Leeds, said Jolly had been a “first-rate researcher” and had managed “brilliantly to build and actively exploit links between evidence and activism”.
He said: “She was critical of orthodoxies and wasn’t afraid to question ministers, charity chief executives and academics alike.
“Debbie was a very strong, focused person, but immensely human, softly-spoken and considerate.”
She was, he said, “a force for good and an exceptional champion of all disabled people”.
Among the academic work she leaves behind is an article from 2010, for ENIL, in which she gauged the mood of disabled people internationally on the UN Convention on the Rights of Persons with Disabilities, and its effectiveness.
She concludes, two years before she would start to push for the UK government to be investigated for breaches of the treaty: “Many respondents said that monitoring and evaluation processes must be strengthened with sanctions applied to those governments that did not implement or ratify.”
Roulstone said Jolly was “central to the research on direct payments from the early to mid-2000s” and was “lead researcher on a number of very robust studies, ranging from direct payments to transport access and welfare to work”, including a piece of work for the Disability Rights Commission in 2006 on disabled people’s use of public transport.
Another article, published in the wake of the 2011 Dilnot report on the funding of social care, and subtitled “eight things disabled people should know about the Dilnot report”, expressed Jolly’s contempt for “a series of ideologically driven ‘cuts’ by a government intent on removing the fabric of a post-war welfare state”.
She says later in the article that the system was “in crisis” and “constantly denies individuals and families the support and investment that a relatively wealthy country is capable of providing.
“A crisis matched by the erosion of disability rights and supports fought for by disabled people over the past 20 years in a regime that is severely impacting on the lives of disabled people now, and that will impact negatively on future generations.”
Another influential article, A Tale of Two Models, was published by DPAC in 2012, and took aim at neo-liberalism, the American insurance giant Unum, and the so-called biopsychosocial model of disability, while delivering a passionate defence of the social model.
In the article, she critcises the way the big disability charities try to speak for disabled people in a bid to secure “lucrative government contracts”, and how they helped design the work capability assessment, and then spoke out and campaigned against it.
“This is not about getting people into work – there are no jobs, much less jobs for disabled people,” she wrote.
“It is not about even about ‘thinking yourself well’ or tortured nonsensical models shored up by dubious academics in the pay of Unum.
“This is about denying benefits, denying illness and denying disability: It’s about something Unum have a successful history of: denying pay outs for disabled people while capitalising on fear and risk.
“It’s about an ideological regime of misery and austerity in the twelfth richest country in the world.
“It amounts to the biggest government benefit fraud in social welfare and human rights in contemporary history.”
In her own short biography on ENIL’s website, Jolly calls for more grassroots campaigns, which she says would help in “motivating more disabled people to demand change, engage in rights arguments and in developing more of our own solutions to our imposed social and economic inequalities”.
Her son, Oliver, said in a statement this week that his mother was “an incredible human being” and that her family were “immensely proud of her” and “utterly devastated to have lost her, and for disability rights to have lost such an important campaigner”.
Activists last night dedicated a protest outside parliament – which called for an end to welfare reform and highlighted the need for the government to be held to account for the UN report – to Jolly, while her family said they would donate the money they would have spent on a traditional funeral to DPAC.
Oliver said: “The concept of a funeral made little sense to Debbie. She felt that a person could be mourned without the need of such ceremonies.
“We feel that Debbie would rather have money go towards the cause she dedicated herself so passionately towards and therefore have decided not to have a conventional funeral, but instead we will donate the money saved to DPAC.”