Independent Living Heroes – Jamie Bolling and Zara Todd

Independent Living Heroes – Jamie Bolling and Zara Todd

2017 was another landmark year for the European Independent Living Movement and ENIL in particular. After losing some of our great leaders –  Martin Naughton, Peter Lambreghts and Debbie Jolly in 2016 – we have shown great strength and commitment to our values, as we reorganized and moved forward to a victorious 2017. This year in September we organized another successful edition of the ENIL Freedom Drive and celebrated the Independent Living movement, its founders and current and future leaders. Among those were the two powerful women who have been the driving force of ENIL and its youth network since many years now. Hence, in the current issue of our Independent Living Heroes series we dedicate this article to Jamie Bolling and Zara Todd, as recognition of their tireless commitment to ENIL and the European Independent Living Movement.

Jamie Bolling, who led the organization since 2009, handed the steering wheel of ENIL to Zara Todd in October 2017. Jamie went on to deepen her engagement in the Independent Living Institute in Sweden, as the leader of the newly-founded three-year project “Disabled Refugees Welcome” in October and soon after being appointed by Adolf Ratzka to head the Institute as his successor.[1] Zara Todd, the founder and leader of the ENIL Youth Network, joined the ENIL Secretariat team in Brussels shortly before the ENIL 2107 Freedom Drive and is now bringing her fresh ideas and spirit as one of the youngest leaders of ENIL since its foundation.

With a Masters in Social Anthropology from University of Stockholm, Jamie also holds a degree in Languages from Akron University in Ohio, USA and did a Doctorate in Disability Studies at the University of Örebro in Sweden.[2] She started her professional career as an assistant accountant in trading companies in Geneva in 1975. In 1991, after a spinal cord injury, Jamie joined the Swedish and European disability movement and has held leading positions in various national and European disability organizations. For the past three decades Jamie has been researching and working on issues related to international development cooperation, personal assistance, human rights, and democracy at organizations such as the Swedish Disability Federation, Swedish Institute for Disability Research, the Swedish Inheritance Fund, and the Swedish International Aid Association for People with Disabilities.[3] She has also served as the President of STIL – Stockholm Independent Living (1996 – 1998), vice president of the Swedish United Nations Associations (2004 – 2009), as a board member at the Swedish platform for Concord (2002 – 2005), and as advisory panel member of the European Fundamental Rights Agency (2009 – 2012).[4]

Jamie’s commitment to human rights and democracy is also reflected in her active political engagement within the Swedish Green Party, as Chair for the Stockholm Green Party (2002 – 2005), member of Social Committees of Stockholm (2002 – 2005) and Härnösand (2005 – 2008), Member of the City Council of Härnösand (2006 – 2008), Member of the National Board (2007 – 2009), and Member of the Västernorrland County Council ( 2011 – 2105).

Before taking on the leadership of the Independent Living Institute in Sweden, she led the advocacy and European-level lobbying efforts of ENIL, fighting for Independent Living, Personal Assistance, de-institutionalization and against cuts to social support by European governments. Jamie also oversaw the move of ENIL to Brussels, with the establishment of the Secretariat in the heart of European politics, which was one of the most important strategic moves during the course of the organizations existence. The biennial Freedom Drive was moved from Strasbourg to Brussels with similar considerations

As a researcher and activist, Jamie has spoken on numerous European-level events on topics of disability rights, personal assistance, Independent Living and hate crime to name a few. She has penned research papers on the relation of disability, user-led services and participatory democracy.

“Jamie has been a role model for me since I started work at ENIL. She has spent lots of time helping me develop my skills and knowledge in the Independent Living sphere. Above all, she has shown with her own life example that one can live independently and be a happy and successful person with the right attitude and support.”

Announcing the Generation change within the Independent Living Institute in Sweden, Adolf Ratzka noted: “…[Jamie] has an enormous personal network in Sweden and abroad. As a woman she represents a welcome change from decades of male dominance at ILI. Jamie is not only a miracle worker and an experienced leader. She is a very social, open and kind colleague and human being. I’m proud of having such a successor!”[5]

Even though Jamie has moved on to a new chapter in her fight, she will remain a great mentor, leader and a very dear friend of the ENIL family, and we will continue our struggle for equality and human rights in collaboration with her in the years to come.

“Jamie was the person who really introduced me to Independent Living. I think what I remember most is the talks we had in around Christmas with Swedish coffee and biscuits. Also board games will forever be associated with Jamie. Listening and talking to her about inclusion, institutions and Human Rights really helped me to bring ideas in my head into words and concepts I could use and also helped to make clear to me that widening inclusion beyond at that point mostly physical disability was not only possible in theory but also in practice.”

Jamie has left the leadership of ENIL in the very safe hands of our new director, Zara Todd. A Londoner, Zara has been an avid campaigner for disability rights since the age of ten.[6] During her extensive career Zara has been the chair of Inclusion London, directed the disabled women’s organization Sisters of Frida, and has advised UK and European-level government and other institutions on disability strategy, policy implementation, capacity building and participation. Her profile also includes work for the Alliance for Inclusive Education and the National Union of Students (NUS)[7], and membership of the British Council’s Disability Advisory Panel[8]

As an experienced human rights educator, Zara has delivered numerous training courses on human rights around the world, including for ENIL in cooperation with the Council of Europe. Having an intersectional approach to her work, she is especially interested in youth participation and empowerment, and capacity building of disabled women, young people and children.[9] For her commitment to human rights also through her involvement in shadow reporting on a number of human rights conventions in the UK, including the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW), the Convention on the Rights of the Child (UN CRC), and the Convention on the Rights of Persons with Disabilities (CRPD),[10] Zara was featured by the Guardian newspaper.[11]


As an advocate and educator, Zara is passionate about creating inclusive spaces, where everyone can participate on equal basis and make their voice heard. She notes that “The pesky thing about exclusion is it is rarely visible, although this is not unique to disability. If someone is not there how do you know whether they are not there by choice or because they are experiencing barriers getting in the space. The exclusion of many oppressed groups is difficult to challenge because if someone is excluded how do they access you or vice versa to work through and remove the barriers.”[12]

As mentioned, much of Zara’s work focus involves disabled children and young people. In the UK she has supported the involvement of children and young people from ages 4 to 25 in the shadow reporting for the UN CRPD.[13] Given her interest in children’s rights, she is now pursuing a PhD at UCL, studying the impact of participation opportunities for disabled children and young people in decision-making in the UK within the context of the UN CRPD.[14]

Zara has been actively collaborating with ENIL since 2011, delivering a large number of training courses for ENIL and founding the ENIL Youth Network, which she chaired for several years.[15] Since then, we have learned not only about Zara’s professionalism and great work ethics, but also her fun and engaging personality.

“The most memorable event with Zara was definitely exploring Edinburgh together and discovering (thanks to Zara) lots of harry potter and other fun places. The 2017 Study session of the Youth network I think will also stick in my mind. Together we survived the unpredictability of the study session and had a lot of fun moments. Zara like Jamie helped me to from my ideas about Independent Living by challenging my ideas and offering new ways to look at things”.

As a young advocate, Zara continues to inspire young disabled people to take initiative to be in control of their life.

“Zara is one of the first people from the IL Movement that I met in my life and this meeting was eye-opening for me. It happened in October 2012, at the first youth study session of ENIL, held in Strasbourg with the aim of finding the new IL leaders. I was a participant then, very unaware of the IL philosophy, coming from a country where attitudes towards disabled people are still predominantly far away from the social model of disability. I was amazed how confident Zara was in what she was doing and it was then when I thought I can do more with my life.”

As she commences her leadership role of the ENIL team, Zara looks forward to a challenging but exciting journey towards equality and inclusion of all disabled people in a time when access to Independent Living for many disabled people across Europe is under threat. She sees the network of ENIL member organizations as one of the biggest assets for a successful struggle towards human rights: “I believe strongly that we must continue to work with our membership and partner with other organizations to ensure that the independent living movement continues to grow and that ALL disabled people have choice and control of their lives. Over the next few years, ENIL will work to create new ways to engage and support disabled people and our organizations to work with us.”[16]

We look forward to working towards equality, inclusion and human rights, guided by Zara’s vision of connecting, building capacity, campaigning, and championing[17] and building upon the great achievements that our previous leaders, including Jamie, Peter and Martin, have gained since the foundation of ENIL.


Author: Mher Hakobyan




















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