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Case Studies

No One Should Die Due to Lack of Information

Amy Hill

By Meridah Mwania, University of Washington, Kenya

Meridah works with the DREAMS Innovation Challenge project of the University of Washington, which increases access to PrEP for adolescent girls and young women through public sector clinics in Kenya and aims to promote voluntary HIV testing among their partners.

It was mid-year 2011, a Sunday afternoon. My son Muma whispered, “Mama, you have a visitor.” He shook me cautiously since he knew I would be furious with him for interrupting my nap. (God knows naps are precious for working mums.) “What?” I barked. He told me that my neighbor was calling on me and ran off before I could ask which one. Outside our home, I found ‘Mama Twili’ waiting. “Come in,” I said. “No, thank you. But if you could just spare a few minutes, I would like your professional opinion on something. Kind of like a private consult if you are willing,” she quipped. “Sure, I’ll be right out,” I said.

Mama Twili wanted to know what could be done about the yellowing of her skin. I examined her and suspected that she had clinical jaundice – her eyes and tongue were discolored. I advised her to see her physician. Two weeks later, I found Mama Twili seated on her front pouch. She had lost a lot of weight, and her stomach was distended. She greeted me with a weak smile, informing me that indeed she had liver and renal failure and was undergoing dialysis twice a week. She was optimistic that she would recover. I made a mental note that I would check up on her as often as I could. I felt good because I had been of assistance.

 But unfortunately, as health workers, we can’t always be of assistance. Some months later, I was just getting home from night duty when another neighbor, Milka, met me at the door. “Mama Muma, we need you,” she said, pushing me into my house. I sat down, bewildered. Hanna, my other neighbor, joined us. “We have Kyende at my house,” Milka blurted out. “Her mother is dead, we think, but we need you to confirm.” She reached out and held my hand, since I was in shock. “When? How? Why?” was all I could say? Apparently Kyende’s mother had been HIV positive for a while, but had stopped taking her medications. Then she stopped eating. She lost hope, gave up.

After all was said and done, I told myself, ”Meridah, no one should die due to lack of information about HIV/AIDS.”

Breaking Patterns

Amy Hill

By Stella Ojuok, University of Washington, Kenya

Stella works with the DREAMS Innovation Challenge project of the University of Washington, which increases access to PrEP for adolescent girls and young women through public sector clinics in Kenya and aims to promote voluntary HIV testing among their partners.

Growing up, I never questioned a woman’s worth in a relationship. I was surrounded by very strong women who seemed to me just as empowered as men, my mum being one of them. I went through school not feeling much of a difference between boys and girls.

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Then I landed my current job. One of my duties is to capture the experiences of health workers who provide PrEP services (the pill you take before having sex, to prevent HIV transmission). At first, I reported many success stories, and then I started noticing a disturbing pattern. Quite a number of women who were started on PrEP due to their feeling at risk from their husbands’ lifestyles were later opting out because of the same men. It seemed they were doing so at the request of their husbands. Some had even been forced to stop, after being verbally threatened or even physically assaulted.

How could it be that women would not dare to protect themselves against HIV infection, out of fear of their spouses? ‘’Is this what marriage is like?’’ I asked myself as I documented incident after incident. “Does getting married mean putting ourselves second? Risking it all to ‘make it work’? Is marriage worth such a price?” These questions popped into my mind as I tried to understand this scary trend.

I am a product of a very successful marriage. I believe in marriage as much as I do gender equity. I also believe that women have the right to be safe from intimidation or violence at the hands of their intimate partners. Surely it should not be women’s responsibility to make relationships work, especially when doing so might cost them their lives.

Because we were able to highlight this worrying trend, women in the program who experience intimate partner violence are now referred to services offering prevention and appropriate responses. I also started an active campaign for young women, on self-worth in relationships. My first stop was “Sauti Skika” (amplify voices), and yes it was a success!

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But this is only the first step: we must also work with men to revise their views of masculinity and mobilize them to stop trying to control women but instead treat them as equals.

All photos provided by Stella Ojuok.

Living Better Lives

Amy Hill

By Francis Emol, Mercy Corps, Uganda

Francis is part of the team that coordinates Mercy Corps’ DREAMS Innovation Challenge project, which combines vocational or microfranchise training with stipends and vouchers to enable private sector business experience for young women in Uganda.

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I work in the northern part of Uganda, in Gulu District -- a region that has experienced a decade of civil war. Many lives were lost, and we are still in a recovery period. And there is HIV. In our area, the virus is not well understood. Many people live in fear of caring for the sick, leaving patients without social support even from loved ones. HIV is especially affecting young people, who lack information about how to live positively.

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I provide counseling for people affected by HIV and AIDS. One who stands out is a young boy who lives with his grandmother because his parents died of AIDS. This boy has been marginalized and not allowed to play with other kids, because people do not understand how the virus is transmitted. Since he is young, no one bothered to explain to him what was going on -- he only learned from rumors that he is living with HIV. This child of 14 years was left broken and withdrawn, with no one to talk to.

My work offered me the opportunity to get close to the boy -- I was able to provide him with a listening ear. He shared his fears about life based on how he is being treated, and how this is shaping his character and socialization. He was no longer interested in school, for fear of being side lined. I told him, “You can always come to me, if you need comfort or support.”

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I was also prompted to talk to his grandmother and let her know his feelings. She said, “I will do my best to support him in any way.” This experience has given me a passion for working with young people, who often lack the chance to open up. I want to build their skills and confidence to stand up and speak out for themselves, when they face challenges.

All photos provided by Francis Emol.

Supporting Change

Amy Hill

By Lieketseng Sealela, Touch Roots Africa, Lesotho

Lieketseng works with Touch Roots Africa’s DREAMS Innovation Challenge project, which provides internships, psychosocial support, and peer networks to young women graduating from tertiary institutions in Lesotho, enabling them to achieve long-term employment.

I lost my father when I was 20 years old and doing my first year at university. He was the breadwinner, although he was not working a formal job. He had done casual jobs after being retrenched (laid off) from the mines in 1997.

His death meant there was nothing for our family to survive on. I got allowance from a government scholarship, but it was never given on time … and the money was meant for books and food. I nearly dropped out to work in the factories, so that my younger brother and sister could continue their schooling.

At home, we worried constantly about how we would get by. Thus, I went to the high school and asked the principal to take in my sister under the school's financial aid. Because I had been his best student, he agreed. I also saw that my university allowance could help my family. I used it for my brother’s schooling, and to meet our basic needs.

We did survive, and even better. I finished my university degree, and my brother and sister both finished college, with a certificate and a diploma, respectively. My brother has now built his own house and is working a good job. My sister is a teacher at a secondary school and has bought a car.

And me? After all my family went through, I wanted to change the lives of young people who have lost parents and are thereby losing hope for their futures. In my job, I work with them on community projects, sports activities, and debate and drama competitions. I also help train them on HIV and AIDS prevention. In Lesotho, HIV prevalence among girls aged 18 to 24 is high. We teach both girls and boys about the dangers of not using condoms, and encourage them to go for HIV testing, even though it can be hard for those in rural areas to access these services.

We also focus on challenging the common perception that girls who carry condoms and ask their sexual partners to use them are promiscuous. This taboo In Lesotho becomes even worse when girls initiate sex. Why should girls and boys not be treated and viewed as equals when it comes to sex? I believe this must change.

 

 

 

 

My Gift

Amy Hill

By George Semwayo, SAYWHAT, Zimbabwe

George works on SAYWHAT’s DREAMS Innovation Challenge project, using his artistic skills to create graphics and messages for young people, about how to achieve their sexual and reproductive health and rights.

George Semwayo with SAYWHAT Zimbabwe.JPG

When I was seven, my parents got separated, and I began to stay with my grandparents. This brought loneliness at first, and then I began to enjoy spending time alone. When I was alone, I always felt safe and secure. My grandparents were around, but I hardly felt their presence.

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I developed a passion for art. I traced pictures of cars from magazines and newspapers using a clear plastic bag and then reproduced them on different paper. I enjoyed using black ink in all my drawings, and every time I completed one, I was inspired to do more. Self-motivation became my strength.

But my father was against the idea of me drawing. He would say, “You are wasting your time drawing instead of reading your school books.” Every time he visited, I quickly hid all my drawings and pretended to read. I felt tense when he was there, my space was being invaded.

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One cloudy afternoon, as I was sketching outside on a small, wooden stool beneath an avocado tree, my father showed up unexpectedly. Right away, he began to criticize me, saying I wouldn’t achieve anything from art. But then my aunt came forward and said, “Don’t discourage him -- if it’s a gift, let him pursue it.” I couldn’t believe it.

She began to encourage me and even took me for lessons at a local art gallery. I knew that even though my father was against me drawing, I just had to believe in myself, because I had no other vision of what I could be. After taking art in primary school and high school, I found out about different careers I could do, with art. I spent many nights drawing, to create an impressive portfolio for my college application. I was accepted and completed a four year program in 2015.

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Some of the young people I work with today tell me about the pain they feel, when their parents try to push them in school subjects or careers they don’t want. I always think about those kind words of my auntie, when I encourage them to hold on to their dreams, no matter what.

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All photos provided by George Semwayo.

 

Girls and Boys Have Equal Value

Amy Hill

By Grace Nakaggwe, Wizarts, Uganda

Grace leads the Wizarts DREAMS Innovation Challenge Project, which focuses on preventing HIV and AIDS by helping to ensure that adolescent girls stay in school.

I was born last, out of ten children. Despite my parents being educated, they lived at odds with each other. My father’s people had no consideration for my mother -- she suffered at the hands of her in laws for giving birth to more girls than boys.

My father had many relationships outside their marriage. He wanted to have sons in order to validate his status as a man. It felt very disgracing as a daughter, to be de-valued -- it never seemed fair to me, that somehow we girls were not enough for him. For years, my mother was lost in bitterness, anger, and quarrels, and our home was a war zone.

So it was my elder sister who raised me. She was my best friend, mentor, and the only mother I ever knew. She gave me a good education, encouraged me to believe in myself, and made me determined to achieve. She always said, “Beauty is embracing who we are.” I won’t forget all the sacrifices she made. She held the family together, after my father finally departed for a new marriage with a young woman, and she relieved our mother of financial stress by getting a job.

When my sister passed away suddenly, I was shocked, broken. All my dreams and hopes crumbled. Worst of all, her burial was rushed, and I wasn’t allowed time to mourn her death because she had neither married nor had a child. I wondered, “Was she less of a person for not having done these things? Was she not a mother to me?”

In our Baganda culture, women who haven’t married or had children also have no inheritance rights, unless there is a legal will that specifies so. It didn’t matter that I was her next of kin -- within just two weeks of her passing, all her household property was distributed among male relatives. I was very depressed.

But slowly, I recovered, and I became determined to help other girls access their rights. I believe that girls should treated the same as boys. Gender should have nothing to do with someone’s value and opportunities in life.

 

Sample Youth Story: Selina

Amy Hill

The day after I finished secondary school, I told my parents I was going to the capital city. It’s far from our village, a 20 hours drive. My mother said, ‘You should not go!’ My father said, ‘You should go!’

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When I reached the city, I didn’t know what to do. I didn’t understand Twi or English very well. I was at the bus station, and I saw a girl who was a porter. I greeted her, I said, ‘I don’t know where to sleep, I need help.’ She told me to come with her. We stayed in a room together with 10 other girls.

One day I was going to my work as a porter, and I met a girl I knew from the village. She told me she lived alone and that I could stay with her. That evening, she and some of her friends were dressing up. They said, ‘If you want to survive, you should have sex.’ They were doing it for money. They told me they would make up my eyes, give me new clothes and shoes.

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At first I thought maybe I should do it for a while, so I could make some money to go back home. But I knew my parents would kill me, if they found out. When I said no, the girls got angry. They told me if I wasn’t going to do it, I had to leave.

I still work at the market, but instead of carrying goods, I help a woman cook and sell rice and yams. I went back to my village this year to visit my family, at Easter. I told the girls there that the city is not how they imagine it. Instead of moving there, they decided to stay home, even though life is hard in the village too.

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Sample Written Story: Sibongile

Amy Hill

My name is Sibongile. I got married on the ninth of December 2000. It was a white wedding, held at the Simunye Pentecostal church in Swaziland. We were so happy. But after three years, my husband got sick and died.

He was an employee at Simunye Sugar Company, so we had been staying in one of the company houses. Even before he was buried, my in-laws wanted a share of what we had. They took everything, from the bedroom to the kitchen and the car. They left nothing for me and the children.

Rural Swaziland, where Sibongile lives.

Rural Swaziland, where Sibongile lives.

In the Swazi custom, a woman must stay indoors, away from the public, for 30 days, beginning from the day her husband passes away. So I went to his parental home, with my children. After the cleansing ceremony, my in-laws asked if I wanted to visit my parents. I thought they were being supportive. When I returned after two weeks, I found out I had been wrong.

I found my mother in law, sitting in front of the house with her friends. They laughed at me and shouted, “Where is this one going to, because this is my home, not your mother’s home. Take all your kids and go away.” She called one of her other grandchildren and told her to lock the door.

On top of this, I was very sick at the time; the doctors were sure I would die any moment. But I started my ARV treatment and recovered well. It was so very hard to live without a job and with no support from relatives. I managed to rent a small apartment in the country, and my husband’s company paid the school fees for the children. We struggled to live.

Sibongile with her children

Sibongile with her children

I want to counsel HIV positive women like me -- this is in my heart. You see, in our country there is no law that protects the inheritance rights of women. If you are a woman, you cannot get a piece of land by yourself. You have to bring a boy child, so that the land can be registered in the boy’s surname. Until we gain our rights, we must help each other to survive.

- Sibongile works at the Swazi National Network of People Living with HIV and AIDS, in Swaziland

 

Sample Written Story: Tembelani

Amy Hill

Tembelani's views about what it means "to be a man" have changed, over the years

Tembelani's views about what it means "to be a man" have changed, over the years

Growing up, I had three families: my mother’s home, my father’s family home, and my maternal aunt’s home. My mother said, “If you have three homes, you must always visit all of them.” Two of these homes wanted to send me to school. I chose my father’s family, because they had cattle that I could look after, and I was excited about that life. So I stayed there, preferring to look after the cattle rather than going to school. I thought this is what it meant to be a man.

As I was getting older, I went to find work in Johannesburg. I found a job in the mine. I came back to my village in Eastern Cape to go to circumcision school. When I returned to my job, I got injured in both legs, but that was a blessing for me. I never liked being in the city, as it meant I was far away from home. So I stayed at my village, later becoming a ward councillor.

After getting injured on the job, Tembelani left Johannesburg and return to his village

After getting injured on the job, Tembelani left Johannesburg and return to his village

One day, some people came here to teach us about the rights of children. Village men said that raising children was a job to be done by women; the trainers said both women and men can take care of people. I realised that I was not treating my own children properly. I even thought that’s what being a man meant.

Now, I have totally different ideas of what it means to be a man. I help run programmes at schools, advising boys about sex and how to use condoms. These boys even tell me, “We do want to test our blood,” but the problem is that clinics are far away, and people don’t have money for transport to get there. I see this as my challenge, to ensure there are clinics here.

Because of my role in the village, all the people here are my responsibility, especially on issues concerning health. Now I no longer have just three homes – I need to look after the entire village. They are all looking up at me. Leaders must not be afraid to speak out about what is helpful and what is right.

- Tembelani works for the municipal government in Qumbu, South Africa

 

Sample Written Story: Nolusindiso

Amy Hill

My father passed away when I was nine years old. My mother took care of us until 2002, and when she also died, I was left with my brothers and sisters. Our older brother looked after us, feeding us as well. But when he got married, he had other responsibilities.

After both her her parents died, Nolusindiso was left to care for her younger siblings

After both her her parents died, Nolusindiso was left to care for her younger siblings

I then became the parent to the young ones. I tried to apply for their grant money. I collected it and then took care of them. A lady in our area saw what I was doing for my family. She said, “We would like to offer you a job, to help you take care of orphans and vulnerable children.”

At her organisation, new employees get tested for HIV. I was very scared, because I had been having sex without a condom. I also knew that rumours would spread if I went to the clinic. But I got my blood tested, and I got lucky – I tested negative.

My heart was glad and joyful for the job I got. I have learnt a lot about HIV and AIDS. I can now stand tall in my village and tell people that all of us are HIV positive or HIV negative. It is just that some are infected, while others are affected. It makes no difference, who faces which of these things.

Nolusindiso is so happy that her job allows her to support children in need

Nolusindiso is so happy that her job allows her to support children in need

I have worked with young children for almost a year. I make sure their relatives spend their grant money wisely – that instead of buying alcohol, they buy food, clothing, and school items. I’m proud of myself, because I am able to take care of children who have lost their parents, just like I did.

- Nolusindiso works for the municipal government in Qumbu, South Africa

Sample Written Story: Tapiwa

Amy Hill

My father used to beat my mother and call her names. He used culture as an excuse to deny her, and to deny us our rights to peace. He would say, “Women and children should respect the head of this family, and no one can rule besides me in this house. It’s my culture.” I had to ask myself what kind of culture that could be. I was young, I couldn’t do anything, but I wanted to fight him back.

When I was bigger, I went to a boarding school. I used to worry about my mom when I was away. I wondered what my dad was doing to her and what would happen if I went home for the holidays. I couldn’t concentrate, with all the wondering.

Tapiwa (far left) at boarding school

Tapiwa (far left) at boarding school

I joined a gender and HIV/AIDS club that had more girl members than boys. I learned the many misconceptions my schoolmates had about gender. For the boys, gender was about women’s issues; it had nothing to do with being a man. This disturbed me, because I knew from my own life how gender-based violence affects both women and men.

In my work today, my colleagues and I challenge young men’s ideas about what a man should be like. When they say, “Men should take risks, because that’s what being a man is about,” we point out that certain kinds of risks are not about being brave, they are about getting HIV. As a man, I want to change the thinking of other men and young boys about the roles they play in life as husbands, fathers, and members of communities. I have vowed not to use violence in my life.

A few years ago, I was sitting with my dad in the garden, and we started talking about a domestic violence murder that had happened recently. Right away, he brought up the times he had been violent. He apologized for what he had done to us and to my mom. I could see that he is a different person than he was. He respects my mother and us as his children. My father’s story tells me that our strength as men doesn’t have to be for hurting. Instead, it can be for finding the courage to change.

- Tapiwa works with the Padare Men’s Forum on Gender, in Zimbabwe

 

Putting a Face on Hepatitis B: The #justB Storytelling Project

Amy Hill

To date, more than two billion people worldwide have been infected with hepatitis B. The Hepatitis B Foundation, which works to improve the lives of people living with hepatitis B recognizes that directly engaging community members in speaking out about obstacles to testing, prevention, and care is essential to reducing the stigma associated with the virus, encouraging screening, and improving services.

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Women’s Policy Institute: Sharing Stories of Women’s Health and Gender Justice

Amy Hill

The Women’s Foundation of California’s Women’s Policy Institute (WPI) is striving to increase the number of women and trans people who are actively engaged in public policy so that they can have a greater impact on the fundamental conditions that affect their lives, families, and communities. The WPI understands that storytelling forms an important part of the process of amplifying the voices of historically marginalized groups during the policymaking process, galvanizing community support for particular policies, and raising the awareness and consciousness of legislators as well as potential allies and supporters.

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Oregon Health Authority and Confederated Tribes of Warm Springs: Using Storytelling to Illustrate the Impacts of Climate Change on Health

Amy Hill

Public health practitioners are increasingly focused on the critical need to address the relationship between climate change and health. Leading the way on statewide efforts to build community resiliency for mitigating these impacts is the Oregon Health Authority (OHA), which in the fall of 2016 released a Climate and Health Resilience Plan. Among a range of actions outlined in the plan is the use of storytelling methods to engage local community members in learning about and responding to climate change.

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University of Maryland (Baltimore County) Demonstrates the Power of Story in Service Learning

Emily Paulos

Colleges and Universities across the United States and around the world are increasingly embracing models for service learning, as a way of connecting students with local communities and needs. As a way of kicking off a service-learning program led by the UMBC New Media Studio (NMS), StoryCenter led a series of digital storytelling trainings for staff and faculty. What then emerged was a collaboration involving the NMS and Retirement Living Television (RLTV), a closed circuit television programming effort of the Erickson Retirement Communities (now Erickson Living). 

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The Ohio State University Develops a Community of Practice to Engage Students, Faculty, and Staff in Digital Storytelling

Emily Paulos

In 2005, two members of the Ohio State University (OSU) library system, Karen Diaz and Anne Fields, attended our StoryCenter digital storytelling workshop in Asheville, NC and together created a story about renovations to the OSU library. Upon their return to Ohio, they engaged the newly formed Digital Union in a project to integrate digital storytelling into the library system’s information technology and curriculum support services. A year later, OSU invited us to lead an on-campus workshop, for a group of faculty and staff. This session resulted in the formation of an OSU Digital Storytelling Leadership Team, comprised of members drawn from several parts of the university.

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Afghan Women’s Writing Project – An Innovative, Online Approach to Documenting and Advocating for Women's Rights

Ary Smith

After decades of war and occupation, Afghanistan continues to face tremendous challenges. While the current government claims to support gender equality and women’s rights, daily conditions for women and girls have improved little. Rates of gender-based violence are high; the Taliban persists in its attempts to assert control; and the legacy of the ongoing conflict has left nearly 80% of women unable to read and write. Since 2009, the Afghan Women’s Writing Project (AWWP) has helped hundreds of Afghan women craft essays and poems and share them with the world. These writings enable thousands of readers each month hear directly from Afghan women on issues of personal, cultural, and political significance. 

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Grassroot Soccer South Africa: Speak UP! Young South African Women Share Stories of Identity, Gender, and Violence

Ary Smith

Traditional patriarchal and cultural norms in South Africa, coupled with the legacy of the systemic, state-sanctioned violence of Apartheid over generations, has fueled a society with one of the world’s highest rates of sexual and gender-based violence against adolescent girls and young women. Grassroot Soccer leverages the power of soccer to educate, inspire, and mobilize South African youth to overcome their greatest health challenges, live healthier, more productive lives, and be agents for change in their communities. The organization works with young adult mentors to incorporate sport in dynamic, interactive lessons that provide a safe space for engaging adolescents, deconstructing harmful gender norms, preventing violence, and encouraging participants to seek sexual and reproductive health services.

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Rocky Mountain Public Health Training Center: Storytelling Webinars and Working with Native American Communities

Ary Smith

At StoryCenter, we've heard time and time again from public health professionals of the need to put the "public" back into public health, and while many talk about community engagement, they're still seeking successful and viable ways to put it into practice. This is what the Rocky Mountain Public Health Training Center (RMPH-TC) said to us when they initiated a partnership to bring StoryCenter's storytelling webinars and workshops to public health professionals across the Rocky Mountain region. 

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The Nature Conservancy: Communicating in New Ways About Marine Planning

Emily Paulos

Since its founding in 1951, the vision of the Nature Conservancy has been a world where the diversity of life thrives, and people act to conserve nature for its own sake as well as its ability to fulfill their needs and enrich their lives. Through the dedicated efforts of its diverse staff, the Nature Conservancy uses a non-confrontational, collaborative approach to advance conservation efforts around the world. 

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