Kapka Panayotova, is founder of CIL- Sofia and has been instrumental in spreading the philosophy of Independent Living in Bulgaria. She is one of ENIL’s Board members and we are delighted to induct Kapka into the ENIL Hall of Fame. She embodies the spirit of determination and has encouraged many people across Europe to live self-determined lives- to live their lives as they choose. In this interview, Kapka tells us about her own personal background and where she got the inspiration to set up the Center for Independent Living in Sofia.
Could you tell me a little about your background
I guess I should start with my parents – they made me the way I am: strong, stubborn, curious about things around me and eager to be free. When I was seven months old – it was in 1957 – I got polio. I was one of the last victims of this nasty virus; it was a short while later that the Communist Government of Bulgaria got the vaccine and started its application on children. My situation was really bad at the beginning. Lots of surgeries, rehabilitation, doctors and nurses througout my childhood made me hate hospitals and medical centres but also helped to recover my body as much as it was possible. I walk with crutches now and as I get older things deteriorate – the Post-Polio Syndrome is after me. But I’m not complaining about that – other things drive me mad.
I was raised as a normal child – with a lot of love and support but also with all the duties and obligations to the family as everybody else. I had to clean my room, go shopping, and throw out the garbage. Neighbours were often appalled – “what kind of parents can make the poor kid do these things?” I started reading and writing at the age of four and my mother – she was a teacher – tried to get me to school earlier. The school age at that time in Bulgaria was seven. Due to my disability I was referred to a special school, which was nothing like the special schools in Britain or Germany, it was, and still is, a sort of warehouse where kids learn nothing but parents are told that both teaching and rehabilitation are provided. I was taken to Momin Prohod – a place 100 km away from Sofia – and left there. Apparently, as we left the house I started crying and didn’t stop for days, denied food and didn’t sleep. The staff at the rehab centre couldn’t cope and called my parents to come and take me home. That was the end of institutional care for me. My mom arranged to get me enrolled in the school she was teaching at and thus – being educated with my non-disabled peers in a mainstream school – I managed to graduate from an English Language School in Sofia and the Warsaw University later on. My parents always encouraged me to stand firm for what I believe in, to speak for myself and to be as independent as possible.
How did you become involved in the Independent Living Movement?
In 1993 I got a chance to study NGO management at the Johns Hopkins University in Baltimore, Maryland. There I met many disability leaders running independent living operations. And I realised that this was what I wanted to do myself, this was MY CUP OF TEA. When I got back to Sofia, I initiated the setting up of the Centre for Independent Living (CIL), which was registered in 1995. And here we are: the trouble maker for all governments ever since. Unfortunately Bulgarian politicians keep me busy all the time – they refuse to embrace the social model of disability, the environment is unfriendly and different barriers are all over the place. CIL – Sofia is growing but not as fast as I would like to see it happening. We advocate for disability rights and provide support for those disabled people who want to be independent and manage their own lives.
What do you think was the most significant moment of the Independent Living Movement?
The start of the Independent Living movement in the United States is the most significant moment in the history of disability rights – worldwide. Direct actions and personal assistance are real achievements, which made a revolution in approaches to disability. Ed Roberts is actually the one who mostly deserves a place in the Hall of Fame, more than that, he deserves an honourable position there. Along with Adolf Ratzka, Rachel Hurst, Kalle Konkola, Martin Naughton… I live in a country where these guys, with the disabilities they have, would have been long dead, let alone travel around the world, empowering others – as they did with me. They launched the most significant disability project in Europe – ENIL! I was lucky to have met all of them, and more: Jamie Bolling – a remarkable woman and a dear friend of mine, Debby Jolly – tireless fighter for disability rights and a very special lady, Ines Bulic – real proof that diversity in society works allowing disabled and non-disabled people change the world and make it a better place to live – ENIL is the “tipping point” in disabilities.
What is your vision for Independent Living at present and for the future?
I would love to see Independent Living as the main philosophy, the solid ground of the entire disability movement. Nowadays, we still have the traditional – medical – approach driving most of the organised disabled people through large umbrella type of organisations set up around impairments. They use the human rights language, which is in fact the Independent Living lexis but act in the old fashioned structures keeping disabled people in the paradigm of being sick and dependent on experts. They are more welcome by the governments and those in power because no threat to the status quo is presented by them. Thus ‘personal assistance’ is controlled by service providers and ‘deinstitutionalisation’ becomes a voluntary ‘internal displacement’ of people; ‘support’ has little chance vs. ‘care’ and ‘special facilities’ – though nice and shiny – keep people away from their communities. If Independent Living is to become the core principle of all disability policies – nationally and internationally – all these things will change. When grassroots Independent Living groups become equally important as the large ‘national organisations’, when ENIL is treated on equal basis with EDF, when support in the community is financed as much as the ‘disability services’, then we – as Independent Living advocates – can see our job done. I’m afraid this point in time is still remote unless the Independent Living movement gets stronger, more determined and demanding. I would say, peacefully aggressive.
Why do you think the Strasbourg Freedom Drive is such an important event?
Strasbourg Freedom Drive is a great event! Seeing hundreds of people with extensive needs from all over Europe getting together, marching, shouting and demanding their rights is a life-changing experience for all of us. This is the most powerful tool to facilitate disability participation in both concept and practical terms. All side-events – workshops, conferences, social activities – are a great source of knowledge, an opportunity to exchange experiences, to empower each other, to meet extraordinary people, to make friends. I do not see much of an impact on the politicians and policies but nevertheless it is worth making the effort to get to Strasbourg for the Freedom Drive and depart energised, determined and richer by few more friends and ideas how to change the world.