Welcome New Fellows: Niousha Roshani and Effy Vayena

Q&A with Niousha Roshani
NukantiFoundation.org 
@NioushaMaria

By Sun Woo Lee

What led you to found the Nukanti Foundation?

As Baha’is, my family had always been persecuted in Iran and like the rest of the community, deprived of their human rights. The situation worsened for this religious group at the outburst of the political, later-to-become Islamic revolution, and eventually turned into genocide, killing hundreds of thousands of innocent civilians. Sadly, the persecution continues today.

My father had always dreamt of working with children in Africa, and convinced my mother to go to Cote d’Ivoire. Without any plan in mind or knowledge of the language or culture, they blindly embarked on this new venture when I was slightly older than one year old. Soon after their arrival, my parents were notified of the change of government in Iran from a monarchy to an Islamic republic. They could no longer return to their country of origin; family members and friends were continuously being tortured and killed. We became refugees in Cote d’Ivoire, a nation that was emerging from colonialism and had obtained its ‘independence’ from France in 1960. I grew up in a shantytown and soon learned the meaning of deprivation, marginalization, and lack of opportunities. I first learned what discrimination meant when I switched schools to attend a French institution on the opposite side of the city where I was granted a scholarship. I came to realization then that education was the key to my freedom and my passport to reach all the dreams I had, even if I came from a limited environment. My favorite pastime became dreaming of all the projects I wanted to undertake with other children who did not have the means to study, and of one day travelling the world.

My work with young people began much before I founded Nukanti. I started at a very young age when accompanying my parents on different missions across the country during weekends, holidays and summer breaks. ?I would hold literacy classes with children and women, sessions on human rights, environmental protection, sanitation, empowerment, and more. It became a lifestyle I was accustomed to, and I decided then that I would dedicate my life to working with young people. I also rejected all systems and traditions that oppressed women and promised myself I would be emancipated and independent. My biggest fear was not of dying, but of realizing one day that I had dreamt too big.

During a backpacking trip to Colombia, I encountered an exemplary older woman in the Choco, one of the most affected regions of the country. As she told me her story, I was able to feel her every pain for all the injustice she had endured in forced displacement and massacres as results of the decades-long war. I remembered my own story, and the stories of all those I had come to know closely. It was then that I made her the promise that I would give visibility and a voice to those who had been silenced in Colombia. And this is how my story with Colombia and Nukanti begun. I knew then that my life would never be the same and that I would embark on a long journey to revive my childhood dream. Since then, it has been extremely rocky along the way and with no fairytale ending; many mistakes have been made and many lessons learned. But each and one of them has been worthwhile, and if I could, I would do it all over again.

What are the biggest challenges youths face in the communities you work with?

Colombia has been at war for more than a century and despite recent social and economic advances, young Colombians, especially those in poverty are living in some of the most insecure conditions, and violence has been a common occurrence in their lives. Moreover, the country has been marked by deep structural inequalities that take on distinct forms that deeply affect its young people. The violence is concentrated amongst young, male adolescents, predominantly of African descent with extremely high rates of homicides. While the young men are both victims and perpetrators of the region’s crime, it is mainly due to exclusion from the economic benefits.

The communities in which we work are labelled as “red zones” due to the presence of armed groups and high levels of gang violence. They are also home to large numbers of displaced people who have been continuously marginalized and socially excluded. Thus, there is a lack of community trust and a pervasive culture of violence. Furthermore, given the negative image of the communities, its young dwellers suffer from extreme stigmatization, social exclusion, and denial of educational and employment opportunities. Finally, the prevalence of illegal activities propels young people into collaboration with gangs, drug traffickers, guerrillas, urban militias, local police, the armed forces and others linked to the conflict. Increasing numbers of children have become victims of murder and physical abuse through their association with the internal conflict and the social norms mandated by both the state and illegal armed actors who control their communities.

Could you talk about a few of Nukanti’s projects and how they tackle the problems above?

Nukanti, meaning ‘us’ in the Inga language epitomizes the concept of a community and a shift from the individual to the collective, thus aims to foster community-building through empowering young leaders. We have used different approaches in strengthening the social fabric of the communities we work with that has been weakened or destroyed by the protracted war. Personally, I believe the most powerful program working with young people and their communities has been Playing for Freedom using capoeira as a tool to strengthen community bonds, teaching life values and social skills, and providing opportunities for personal development.

Capoeira is a dynamic combination of martial arts, song, and dance from Brazil evolving from the struggle of enslaved Africans against their oppressors. It was born as their fight for freedom and social justice, and served as an expression of resistance. As capoeira originated among socially excluded groups, its principles lie in inclusion, equality and respect. It also offers the opportunity to immerse in a foreign culture and adapt its rich tradition of resistance to a local setting. The roda, the circle of people within which capoeira is played brings together capoeiristas regardless of their origins, age, gender, faith, income or educational levels. The circular form suggests equality and inclusion, and invites participants to express their striving for a better life and social justice. Therefore, this unique martial art form has been recognized to have enormous potential for social inclusion, especially for marginalized youth.

The program has demonstrated a positive transformation in the community through qualitative results rather than numerical terms. It has impacted both youth and the community as a whole on a personal, social, and professional level. As a process of co-existence and personal development, capoeira has allowed for the inclusion of social excluded youth and their families such as the displaced, and those of Indigenous and African descent. Through its promotion of diversity and solidarity, the project has enabled the strengthening of community ties, increasing trust among its members and lowering the levels of fear and insecurity. The building and recent expansion of the community centre have boosted the social initiatives undertaken by the residents and created income-generating activities especially for young women. Finally, the increased employability of our youth is a sign of the success in acquiring the necessary social and professional skills.

I see that Nukanti has various projects around the world that are happening at the same time. How much time do you spend visiting each project? How do you manage things when you can’t physically be there?

I haven’t spent more than 3 months living in one place for the last 21 years since I left Cote d’Ivoire, so my nomadic lifestyle has helped the need for me to constantly travel and work on the projects. However, as the main objective of Nukanti is to reinforce the social fabric of communities that have been either destroyed or weakened by war, we place full trust and responsibility in the leaders with whom we collaborate in each location. A sense of ownership and belonging is key to participation, leadership and creativity, and thus replaces the necessity of frequent visits on my behalf. Moreover, we have local teams in the country who are in charge of working together with project leaders.

How do the locals react to Nukanti’s involvement? Are they grateful, skeptical, helpful…?

As is the case anywhere else in the world, it takes time to build trust with locals in a community, especially when the initiative is a grassroots one, rather than a top-down approach. In regions that have suffered a protracted war for many decades as in the case of the locations where our projects take place, its residents can be quite circumspect and skeptical about new initiatives being introduced. It is an understandable attitude as local governments have been known for their high levels of corruption and many organizations’ philosophy stem from charity and further dependency rather than co-responsibility. Therefore, our methodology has always been to work with leaders of the community who then take full charge of the projects. Even so, we have found many challenges to break the dependency established by previous organizations and shift from receiving to participating. Full success is obtained when community dwellers feel a sense of belonging to the project that propels them to not only participate but to create in a collaborative spirit. The best example for this is the community center we have built in Cazuca, on the outskirts of Bogota. Initially, when I introduced the idea of building the center with recycled plastic bottles, they thought I was completely mad and even a bit offended for the structure not to be made from common materials such as bricks and cement. After 3 years, residents have seen projects flourish in the center and have taken ownership of not only the building but also of the initiatives taking place in the location. There are now more than 20 different projects beneficial to the neighborhood stemming from the leadership of one exemplary woman in charge of the center.

What is your advice on social entrepreneurship, having run a non-profit?

It is a tremendous amount of work and unless one is truly passionate about what leads them to start a non-profit, it is very easy to have the desire to give up. After having worked with larger organizations, I was frustrated of the relative small amount of work done in the field with the people, and thus decided to concentrate all my energy on the results on the ground. As a result, we have undertaken many successful initiatives with very limited resources and have set a strong foundation for our projects, however have lacked the structure necessary to have access to larger amounts of funding that would allow us to grow more efficiently.

My advice would be to follow your heart and passion but be ready for the many falls and the many times you would have to get up and battle again. It is not an easy path, but it is up to you to decide if you’re an actor or someone in the audience. I have had many ups and downs and a lot more grey hair than when I launched the organization, but I’ve also lived more intensively and learned and received in great amounts from a wide range of wonderful and exemplary people.

What led you to become a fellow at Berkman?

I have always had a blockage to write but was told on many occasions that I was a good storyteller. I think I became one when I made that promise to the displaced older woman I met in Colombia that I would share the stories of those silence had been imposed on. The deeper I traveled in the countryside, the more significant and poignant the stories would get. I started using my camera to record them in an attempt to share with the international community the realities lived by many in Colombia. However, they were not limited to horror stories of the war, but also of strength, hope and resilience among some of the most remarkable individuals I was lucky enough to meet. I encountered increasing numbers of inspiring storytellers from a wide range of ages and backgrounds and realized the significance of having people share their own narratives. That is how in the most organic manner, I became increasingly involved in initiatives using all forms of media to both empower communities and support protagonists to gain position and visibility on an international platform. In the same natural way, I came to know of the Berkman’s Center work with youth and media and was invited to attend the event held last year connecting many activists and researchers working in the same field. A few colleagues from Brazil were also present in the event and together, we decided to join forces and minds in launching a joint research initiative that we presented to the center. The research proposal was received positively and soon we started to collaborate on ways to carry out the project.  I was lucky enough to be selected to take part of an inspirational and remarkable community of thinkers and doers. I look very much forward to this coming year full of new ventures and wonderful people to work with!

Any future plans or goals for Nukanti or yourself?

I cannot separate Nukanti from myself, so the goals go hand in hand. I want to continue to infuse change working together with people at the grassroots level while influencing public policy from the top, that way ensuring that the change created will remain sustainable. I have always felt the need to create while working with people and I hope to have the necessary tools to be able to implement the many projects I have designed. There is so much more I would like to do and hope that I will never lose my inspiration and become a complete realist. Although our projects initially started in Colombia, I have a huge debt toward Cote d’Ivoire and I promised myself I would only return there with a social initiative in hand. Finally, from a very young age, I have always wanted to adopt children and the plan remains active today.

Do you have any other hobbies or interests outside of Nukanti?

Yes, of course! I live to dance and did so professionally for many years. It is something I simply grew up with in Cote d’Ivoire and incorporated even more so into my life living in Latin America.  I am also an addict of capoeira and cannot go very long without playing it. And recently, have become a kitesurfer and find myself chasing the wind, even in the Boston area where the water will be at freezing levels. I am hyperactive, I cannot stay still very long without burning some energy both physically and mentally so I also practice yoga, scuba dive, hike, surf, paint, read and whatever new activity I can get my hands on. But above all, I constantly need to create and think outside the box.

***

Q&A with Effy Vayena
Effy's homepage
@EffyVayena

by Grant Nelson

You are interested in participatory governance models for health data initiatives. To someone uninitiated, what is that? 

My particular interest is in biomedicine and how Big Data can be used to yield benefits for health. Health data initiatives are data research projects that are aimed precisely at answering health-related questions. There is huge promise there along with many vexing ethical challenges. One approach in responding to these challenges is to develop better data governance models. Now, "good governance" is what we hear a lot about. Everyone agrees that we need "good data governance." The question is what exactly "good" is in this case, and how can we translate "good" into specific action? One element of good governance is participation, and what I think about as "augmented participation." By that I do not mean simply more individuals involved, but also their role in various decisions about the data that relates to them. The specific model that I am exploring is a cooperative model and how it can enable augmented participation in data governance. 

What do you think will have the biggest impact in the next 5-10 years on making health information portable from one healthcare provider to another? 

I'd say two things: a) interoperability, and again here I do not only mean the technological solutions for allowing different data systems to communicate but also the regulatory interoperability, and b) user-access to their data -- patients and individuals in general can play a keep role in data portability. This includes but goes beyond patient authorization for data transfers, to patients having a copies of all of their data and being able to exercise control over re-uses

When an individual refuses to take a particular course of action (such as vaccinating a child, or seeking preventative treatment for oneself), how should a society determine whether society's interest trumps that of the individual? What can be weighed and what should be evaluated most rigorously? 

This is a complex issue but surely one we need to grapple with. I think as a starter we perhaps ought to conceive of the societal and individual interests not necessarily as polar opposites. We all as individuals have an interest in a just society and in just health care. If the societal interest in question is about achieving that, which it ought to be, then some individual interests maybe trumped. On the other hand, any just society respects the interests of its members. Negotiating the balance of such interests should be done more systemically. In the realm of health what is important to consider when we speak of individual interests are the social determinants that affect an individual’s interest in health.

What do you think are the most important value judgments societies will need to make as a group in the next generation regarding healthcare? 

One key issue of the future is how we are going to handle personal responsibility for health. The direction that data-driven medicine is taking aims to offer more personalized care but also more personalized prevention options. How much of our health will be considered our individual responsibility and how much of it will be the responsibility of a health care system? How much personal choice can a health care system (that is getting increasingly more costly) accommodate and according to which criteria should limits be set?

What role should health policy regulators play in encouraging innovation while protecting consumer interests?

I think regulators should be facilitators of innovation, for example of biomedical innovation. Consumer interests are broad. We have privacy interests but also health interests. Medical innovation contributes to consumer interests in better health and health care. In today’s environment regulators need to be more attentive to societal changes that happen perhaps faster than in the past. Our norms and our abilities are evolving; regulators need to be reflective and innovative.

What do you hope to accomplish while with the Berkman team? 

I look forward to working on my project and to interacting with the many brilliant people there. I want to get feedback on the ideas I am proposing and to learn from the scholars at Berkman. I also hope to develop collaborations and to become part of the wonderful Berkman network. 

Grant Nelson, who made his high school freshman soccer team three years in a row before realizing soccer was not for him, is now a 3L at George Washington University and CTO of www.meansdatabase.com, a food recovery charity.