International human rights activist for persons with disabilities Rosangela Berman-Bieler is a Synergos Senior Fellow from Brazil. She is founder and president of the Inter-American Institute on Disability and Inclusive Development and recently appointed as UNICEF Senior Adviser on Children with Disabilities shares insights on her journey as a human rights activist after a quadriplegia caused by a car accident in Rio de Janeiro, in 1976.
Rosangela Berman-Bieler: It has been a long time since everything got started. I believe it probably really starts when you are born. I was always very interested and engaged in social causes from when I was a teenager and got involved with different youth movements. Then, in 1976, I had a car accident when I was turning 18 and acquired a quadriplegia. Right after this, I started to go through my rehabilitation process. I started interacting inside of a rehabilitation center in Rio, then I got involved in a patients’ club. At that time, we used to organize internal demonstrations for the improvement of the quality of the food, patients’ privacy issues, for opportunities of socializing, for sports practices, for participation in the decision making of the institution...
The patient’s club started getting really strong and it was closed by the administration. As a consequence of this episode and also of the need of a disability advocacy representation in the city, we decided to found, in 1979, the first association of disabled people in Rio de Janeiro.
During that time, I restarted college. I was studying social communications. So, I became the director of Public Relations of the disability organization and I also got deeply involved in the student movement, all together. I was at that age where you want to embrace the world with all the possibilities you may have. And that’s what I was doing. I started learning a lot, especially about politics and social participation.
While we were developing the disabilities movement in Brazil, in other countries similar processes were going on. For us it was the time right after the dictatorship. The country was pushing to bring back the political activists that were living in the exile. We were fighting to get free and direct elections and I was involved both from the disability and from the citizenship perspective. This experience gave me a wonderful opportunity to learn a whole lot, especially on ideology and on political and social participation.
During those times, the disabilities movement was learning from the political movement in the country and in the World. We were all growing together and learning from each other.
From that time on, I got involved in many different community and student organizations. I was part of the creation of many of them, including disabled persons’ organizations (DPOs). I got involved in local, national and international movements as well. In Brazil I was the first coordinator of the national organization of persons with disabilities and represented Brazil on Disabled Peoples’ International (DPI).
I always had this fascination for working internationally and I started to get involved early in the mid 80’s. Probably that’s what brings me here to Synergos today! My initial work was in/from Brazil and at the end of ’95 we moved to the U.S. My husband had an invitation to work in Washington D.C. We thought we would come just for 1-2 years to improve our English skills and so that our daughter could also learn a second language, and you know how these things go
We are here until now.
What was good for me during all these years is that we live in a country like the US but all my work has been very international and focused in human rights, social justice, poverty reduction and development issues in general, especially in Latin America and Africa. Doing work in the Portuguese speaking African countries brought me a different perspective in life. I could connect to other parts of myself and find ways to contributing a bit to the region’s advancement in disability rights.
When we moved to the U.S. we had a huge disability meeting in Brazil, with about 3 thousand participants, many from Latin American organizations of persons with disabilities. I came with this “assignment”? from them, of creating some kind of Inter-American interface between disabilities and development. I was moving to Washington, D.C. where the World Bank, the Inter American Bank, The Organization of American States and other inter-American institutions were located. And, in 1998, I founded the Inter-American Institute on Disability & Inclusive Development (IIDI).
Interviewer: I heard you mentioning learning several times. From your learning earlier on when you were in school and beginning to develop yourself as an activist, what was the most important thing that you learned?
Rosangela: I always have a lot of problems selecting one thing, prioritizing something over all the others, as for the “big picture”, all are equally important and should be functioning together. Actually, at that time, I was learning a whole new perspective and approach of and to myself, from an individual perspective. Everything was about learning and reconstructing my own understanding of myself, of others and of the world, altogether. My personal development process was very strong at that point. I was a teenager becoming an adult and having to start all over again from another place in life.
One of my realizations is that there is nothing that cannot be done. When you have a vision, a desire, you will find or, if not, you build the way for accomplishing it. And nothing should be able to stop this process to happen.
The other thing that I learned: life goes on independently of you. That’s a very important thing for an activist to learn because many times we tend to be very self-centered and to believe that the only way the world can be saved is if we are there. I am now sure that we, activists alone can save the world. We indeed have our contribution to give but it’s only our perspective and for systems change we need all perspectives harmonized. To achieve it, we need to think strategically and work in groups, in movements, in partnerships, in networks that do not depend on few individuals only. There’s not one leader, one solution, one choice, one perspective. Everything is connected. You really have to open your mind and practice to working as part of something beyond yourself, even beyond systems; you have to get to human development. This is maybe the other most important thing that I’ve learned and that defines my practice now.
Interviewer: Did social justice activism, building a movement lead you into bridge building?
Rosangela: That’s a natural consequence, if your strategy implies working with other people. It is not that easy to build real and effective bridges that go beyond just sporadic interactivity. It requires a focused effort, persistence and a dose of generosity, by offering facilitation - not control. Unfortunately in our world, “personality”? is sometimes in the center, in the way of all these processes. You build bridges because you had an opportunity in life of getting closer to someone or something that is important, that can help you and others achieve other levels of power, of development, of achievement. It is a really important function for a leader to build this kind of capacity so others can use the opportunities you help to identify/create and continue their work by themselves, not depending on the initial individual links with you.
Interviewer: Your came to the US with the challenge to build a movement across the Americas.
Rosangela: Well, actually it was not just and inter-American movement, because the movement with civil society was already there. The big challenge was how to bring economist and the whole sector of development, which is a very specific one, to buy into our cause to begin thinking that disability in fact is something that is part of their work. That was and still is a huge task.
Interviewer: And it seems that you’ve have been very successful at this. I look at the list of agencies that you work with: the IDB, The World Bank, the UN System and so many others.
Rosangela: We, together with many other people that have been working hard in the same direction, have been relatively successful as there is still everything to be done. We, at IAID, were able to influence in a very key moment when, in the beginning of the year 2001, the Inter-American Development Bank started to show interest in inclusive development issues. At the same time, the World Bank was just starting to get involved with disabilities as well. I had a great opportunity of being right in the middle of this process and bringing the two parts together with the disability community in LAC, building bridges that contributed to the development of an agenda on disability and inclusion in the Region. Actually, the whole concept of inclusive development was something that we started building together with other few groups at that time. Now it is being absorbed as a new paradigm for the development sector in general.
But our main achievement, as a world community, was the negotiation and the adoption by the United Nations, of the Convention on the Rights of Persons with Disabilities (CRPD, 2006). This was the real paradigm shift from a medical to a social model of disability. The main challenge now is implementation in national and international levels.
Interviewer: I hear you talking about strategy and inclusion. What is the secret formula?
Rosangela: I really don’t believe in formulas. The important thing is the vision and the involvement and participation of the “beneficiaries”. You build a formula for each situation and context, with enough flexibility to keep adjusting it all the time. That’s why, in my opinion, no formula is possible for replication as is. Every context has its own complexity that needs to determine a good strategy, taking into consideration all aspects and opportunities of the local moment. You may have one million different “formulas” for each situation; for each person that you talk with, for each proposal that you write. It is good to have other experiences to learn from but there is no model that is good for all.