ENIL is pleased to present you Mima Ruzicic Novkovic as the latest role model on our website. She was born in Novi Sad, Serbia, and is one of the leaders of Centre Living Upright (CLU) in her country. Mima was a board member of ENIL and is still supporting ENIL’s work on every occasion. Below you can read an interesting interview with her, revealing more about her work as a researcher.
Question 1: Hi Mima. Can you tell us more about your interest in research and in the work at The Academic Network of European Disability Experts (ANED)? How do you see ANED’s role in promoting Independent Living?
I’m representing Serbia in ANED, starting this November for a one year period. ANED’s focus now is analyzing how represented countries, both the EU and its neighbors in the accession process, are implementing the EU 2020 Strategy, in particular when it comes to the social rights of disabled persons. For me personally, ANED’s DOTCOM platform is useful for any research in the field of disability at the state level, but also from a comparative perspective. There is an apparent dedication to the topic among ANED’s representatives and obvious good intention and recognition of the key points in relation to our social position. What is unfortunate is the underrepresentation of disabled researches in the network, as well as – and maybe it is just my first impression – a slightly different approach to the causes and consequences of disablement than the movement has itself, as well as of the role of disabled person’s organisations (DPOs) as a stakeholder in data collection on disability.
It was good that this year’s annual ANED meeting included research on Article 19 done by the Fundamental Rights Agency (FRA), as well as its work on deinstitutionalisation. The meeting was attended by three persons directly involved in the Independent Living movement: Kapka Panayotova from Bulgaria (ENIL’s Chair), a representative of Polio Plus in Macedonia, and me. I think that the Independent Living movement should take into account ANED data and monitor its accuracy, as well as share it within ENIL members in order to get the opinion from Independent Living organizations and people who are directly involved at the grassroots level. This is a component that the European Commission recognized as needing to be better included.
Considering the links between poverty and disability, and the effect of poverty on Independent Living – which we have all witnessed in the last decade or so – I think ANED and ENIL can offer their data bases as a sort of common ground for strategies against poverty creation and the tackling of poverty. What I notice is that ENIL is still not recognized as a potential source of information or a partner by ANED, and we need to work further on it. When I say we, I think of both , but more of ENIL in particular needs to make its outputs recognizable to the general academic community, including ANED. Using the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) as a tool that can make a difference is a common one to ANED and the Independent Living movement, and this why I am honored to participate in the work of both networks at this very important moment for several social processes affecting the Independent Living movement and our lives globally.
Question 2: What is your work in Serbia now? And with ENIL?
I’m leading the Centre Living Upright (CLU), based in Novi Sad. Its mission is the respect of all human rights and full implementation of the UN CRPD, with a focus on articles 4, 6, 7, 9, 12, 19, 24 and 27. The Centre’s focus now is on mainstreaming the personal assistance (PA) service into the Social Protection policy of the City of Novi Sad, which we expect to be adopted until March, after 8 years of advocacy and lobbying. Also, I’ve had the opportunity to record the oral history of Gordana Rajkov, the founder of Serbia’s Independent Living movement, on the occasion of the 50th anniversary of her activism, and the 20th anniversary of the Independent Living movement in Serbia. The book will be published by March 2017.
CLU is working on finding a way to establish a foundation for assistance and other community-based services (CBS) that would offer matching to the available state funding for this purpose, since we are all facing of the lack of proper PA service or non-recognition of its purpose. This is not only because of the cuts, but because of the view that systemic support to disabled people equals equipped isolated facilities, where we can be taken care of very similar to domestic animals or pets. Unfortunately, there is still a part of the disability community seeing this as the option for permanent assistance, having no other option offered. Having faced the national movements and the instability over the last 25 years, Eastern Europe and the Balkans are still relying on the medical model, and experiencing the social one mostly at the terminological level. We have a two-track approach, using at the same time what is offered from both models and being aware of their substance, but not ready enough to give a chance to real change. Apart from the expected consequences of the changing generations and the not so efficient transfer of knowledge, we are now facing a lack of awareness that the role of the disability community is – same as for any other social group – to contribute to the society with a particular experience without which modern society, wherever we are, would not exist in the same way.
I am an ENIL supporter, simultaneously proud of its work and sad knowing that it can be more influential and stronger if we all learn and work more. I have no concrete advice what should be done for more recognition of the substantial output of all parts of the network in the past 27 years. I support ENIL, the Civic Initiatives from Belgrade, ULOBA, CIL Berkley, Equality House from Kansas and several more organisations, which I will always follow and contribute to with my experience and knowledge, first of all because of the shared approach.
Question 3: Do you see any significant progress in terms of Independent Living in Serbia since the country’s ratification of the UN CRPD?
Yes, we have a legal framework that offers the development of preconditions for Independent Living. (Un)fortunately, most measures have municipal funding, not the state or provincial one, and weather personal assistance will be recognized as a priority within the social service system of a municipality depends on its assessment; in other words, whether the particular municipality has a CIL branch, another Independent Living organization, initiative, or knowledge. If not, the personal assistance service is not recognized. The situation with accessibility has been improved, especially in larger towns and cities, but beyond the good legislation, there is still no systematic approach to it and there is the lack of a watch dog, monitoring and inspection.
Eighteen thousand people are institutionalized. Most of them are (develop)mentally or intellectually disabled persons, with almost no chance of getting personal assistance. The only other choice offered is group homes led by non-disabled experts. The stakeholders still haven’t recognized that the law itself defines basic standards, and that nothing keeps us from creating improved ones. We need to demonstrate in which way or perspective the existing legislation can be improved as well. Luckily, the New Strategy of on the Improvement of the Position of Persons with Disabilities of the Republic of Serbia includes almost all recommendations of the CRPD Committee to Serbia, which is especially important for Article 6 and 12.
Question 4: Do you want to send any message to the Independent Living activists?
Criteria for the preconditions for Independent Living, defined by ED Roberts and improved by others, the ENIL definitions and other policies we have created are important for the development of the entire society. Having in mind demographic changes, there will soon be much larger groups of people needing accessibility and assistance based on the principles we live by. Therefore, our duty, or a kind of social obligation, is to keep working and learning (from) each other and to make our knowledge part of the academic and furthermore political framework, in order to be present in any relevant decision making or social development related process. And of course, I wish everyone a better and successful 2017.