This is a tale of two courageous women, of Debbie Jolly – “a force for good and an exceptional champion of all disabled people” and Kapka Panayotova – the “Good Witch of Independent Living”. These two Independent Living Heroes have fought in two opposite corners of Europe, in Britain and Bulgaria, empowering thousands of disabled people in their countries, as well as contributing to equality and human rights throughout Europe and internationally. They share the vision and commitment to Independent Living, and the firm belief in the social model of disability. Peer support and self-representation have been championed by both, coupled by the open and strong challenge and criticism of traditional care systems and charity approaches to disability. In male-dominated political arenas, these two powerful women have stood firm for their ideals and have fought fiercely for equality and dignity for all disabled people. Complementing their free spirit and boldness, they share the pragmatism of organization managers and scientific researchers.
Kapka Panayotova was born in 1957 in Bulgaria. Being one of the last ones to be affected by polio before the Bulgarian government introduced the vaccine, she acquired her disability when she was seven months old. Despite initial struggles with health, numerous surgeries and rehabilitation phases, Kapka grew up a stubborn and curious child, eager for freedom and love for life, characteristics that she carries through her adult life and activism. She credits her parents for having a major influence in shaping her personality, for providing her with great love and support but also with equal responsibility in daily chores as a family member.
Despite learning to read and write at the age of four, young Kapka was referred to a special school due to her disability. A failed attempt fought by tears and a hunger strike of the stubborn child was the last one of her family to try to place Kapka into an institution. Years later, Kapka Panayotova would put the same zeal and anger in fighting for de-institutionalization in Bulgaria. But first she would enroll in the school where her mother taught and get educated with equal merit as her non-disabled peers in mainstream education. She would then graduate from an English Language School in Sofia and the University of Warsaw.
Ten years after Kapka Panayotova’s birth, Debbie Jolly was born in 1968 on the other side of Europe, in the UK. She grew up in Bethnal Green London and later moved to Leicestershire with her family. She graduated with a Master’s degree in Disability Studies from one of the world’s leading research centres on disability, University of Leeds Centre for Disability Studies.
In 1993, Kapka Panayotova had the opportunity to study NGO management at the John Hopkins University in Baltimore, Maryland. This would be a life-changing experience for her, as the inspiration she received from meeting many Independent Living leaders in the United States would be the spark to ignite the tireless activism and advocacy that Panayotova does to this day. After returning to Bulgaria in 1995, she established the Centre for Independent Living Sofia (CIL Sofia) and since then has been pushing for the realization of Independent Living and Personal Assistance on national level. In 2014 CIL Sofia staged a protest at the Sofia International Airport with the slogan “We are going to places where pavements have no curbs” in order to bring attention to the lack of accessibility to the built environment and vehicles for many disabled people.
Jolly’s greatest life project was perhaps the Disabled People Against Cuts (DPAC), which she co-founded in 2010. As a member of the steering group of DPAC, Jolly fought vocally against state imposed austerity measures that had detrimental, in some cases life-threatening, effect on many disabled people. Civil disobedience being one of its campaigning methods, since its foundation, DPAC has been mobilizing disabled people for protests and public actions against lack of access and services needed for full participation of disabled people in society. In fact, direct action campaigning is something that Panayotova and Jolly shared as their working method. On one such action against cuts took place in 2016, when DPAC activists blocked the Westminster Bridge in London. The organization also actively protested against the UK government-contracted company Atos (ironically, also one of the sponsors of 2012 Paralympics), that carried out the infamous work capability assessment (WCA). Trying to determine eligibility for sickness benefits, the assessment, at times flawed enough to consider people with advanced Parkinson’s disease or multiple sclerosis ‘fit for work’, resulted in the impoverishment, institutionalization and suffering of thousands of disabled people.
Always straightforward and clear, Debbie Jolly penned a highly critical article in The Guardian, denouncing not only the hypocrisy and harm caused by Atos, but also the UK government for its welfare cuts of £18bn and closure of the Independent Living Fund on which more than 21,000 disabled people depended in one of the richest economies of the world.
Jolly’s criticism also extended towards the large traditional charities, which she considered complicit in reinforcing the oppression of disabled people by robbing them of their voices through having non-disabled people speaking on behalf of them. She pointed out the problematic character of the ‘concern’ of ‘experts’ and ‘professionals’ for the ‘best interest’ of disabled people, without ever trying to listen to their wishes, thus silencing their voices and maintaining institutional segregation. Hence, Jolly was convinced of the responsibility of disability activists and disabled people’s organizations to speak against such injustice and called for peer support as an important empowerment tool for disabled people to regain their voice.
As Jolly emphasized the need to call out injustice and report any abuse of human rights, backed by factual evidence, she led by example by pushing for the United Nations investigation into the mistreatment of disabled people in the UK, for which she collected extensive evidence to support the claims. Just shortly after her death, in an environment of political intimidation, the report concluded that Britain “had committed grave and systematic violations of disabled people’s human rights.”
Despite being always critical and openly challenging orthodoxies and those holding political power, Jolly never sought publicity and spotlight. As her colleague from DPAC, Linda Burnip, remembers “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.”
Jamie Bolling and Kapka Panayotova during Freedom Drive 2015
Similarly to Jolly, Panayotova describes herself as the ‘troublemaker’ for the government, while the Bulgarian politicians and political environment remain unfriendly and reluctant to embrace the social model of disability. Likewise, Panayotova does not mince words, and is always bold and straightforward in her criticism of human rights violations and discrimination of disabled people in Bulgaria. She doesn’t believe in diplomacy and calls political correctness ‘stupid’, instead advocating for clarity and determination in both word and action. In 2011, Kapka Panayotova published a strongly-worded opinion piece, heavily criticising the Bulgarian government for its lack of political will for de-institutionalization and for using disabled children in institutions for propaganda in adocumentary aired on the Bulgarian National Television. Her consistent outspokenness has resulted in the development of entirely new anti-discrimination legislation in Bulgaria.
Panayotova, too, is a firm believer in empowerment through peer support and solidarity. Parallel to this, she gives significant importance to mainstreaming of disability in the various domains of social, economic and political life. She shares the same critical viewpoint on professional care and the hierarchical relationships it implies. Contrary to dependency on ‘professionals’, Panayotova emphasizes the vitality of mutual support and self-reliance of disabled people. She prioritized support over care, for example in the context of families or communities supporting their disabled children and adult members to realize their potential and become active and full members of society. Speaking of care, she asks, “Do care about instead of taking care of”, as disabled people need support instead of guardianship. She also argues for financial empowerment of disabled people through shifting funding from care services to directly disabled people. Also critical of charities, Panayotova is proud that CIL Sofia operates through project grants, mostly by international and European organizations, such as OSI, ULOBA and the European Commission.
Both Debbie Jolly and Kapka Panayotova have been significantly involved in spreading the Independent Living philosophy throughout Europe. Jolly was an ENIL Board member for several years until her death, and was employed by ENIL between 2007 and 2009 on a project promoting Independent Living in Europe. Additionally, she was active in ENIL’s Alliance Against Disability Cuts campaign to influence the European Parliament to counter austerity measures on disabled people. She worked on developing a directory for Independent Living in Turkey and cooperated with CIL Sofia. ENIL’s Executive Director Jamie Bolling credited Jolly’s contribution to ENIL, describing her as a “strong believer in the user-led grassroots groups, [who] made sure ENIL is able to engage with and support disabled people active at the local level in their countries.”
Similar to her fellow activist Debbie Jolly, Kapka Panayotova’s work extends beyond the borders of Bulgaria. As a Chair of ENIL’s Board, she has been contributing to the promotion of Independent Living on European level. She has also worked with various disability groups in Armenia, Azerbaijan and Georgia, and projects in several Balkan countries.
As a researcher, Panayotova utilizes her expertise in macroeconomics for advocacy-oriented studies. She has been a disability advisor and a trainer in Bulgaria, has contributed to the International Disability Rights Monitor (2006) and ANED’s work on Disability Policies in Europe.
Jolly’s scientific work has provided solid foundation for her activist work, as she published and edited numerous research papers during the course of her life. As an Independent Living researcher, she was a member of the Academic Network of European Disability Experts, of the National Union of Journalists, as well as served on the editorial board of the journal Disability and Society. She left behind an extensive catalogue of research articles, much of which can be accessed on the University of Leeds Centre for Disability Studies website. Former professor of disability studies at Leeds, Dr Alan Roulstone credited Jolly as a “first-rate researcher” and celebrated her ability to “brilliantly […] build and actively exploit links between evidence and activism”.
Debbie Jolly’s untimely death was a great loss for the disability community and for the unfinished fight for equality. However, as long as Independent Living Heroes like Kapka Panayotova carry the torch Jolly has passed, her spirit will remain alive and will continue to empower future generations of disabled people. Her light will not only continue glowing, but will become stronger and brighter, guiding young Independent Living Heroes in their struggle for human rights for all.