The Impact of Language & Respectful Storytelling.
As storytellers mobilizing support through compelling narratives, we are acutely aware of our responsibility to do so without jeopardizing the privacy or dignity of the people we serve.
On International Day to End Obstetric Fistula and for the past few weeks, we asked ourselves, and our partners, an important question:
How do we, as fundraisers, clinicians and global health advocates talk about fistula without imposing our own narrative and excluding women living with fistula from their own stories?
How do we talk about fistula?
Obstetric fistula is one of the hardest topics in global health to discuss. It is challenging to explain this invisible, relatively unknown condition without difficult details. Women living with this preventable, treatable disability are some of the most vulnerable women in the world. Each has survived a prolonged, obstructed labor, which could have killed them, only to survive with lifelong morbidities.
Women who survive obstructed labor often lose their baby. The babies that survive can suffer lifelong neurologic disease caused by reduced oxygen levels during labor. These babies may suffer paralysis and developmental deficits. In addition to the chronic incontinence that comes when a fistula develops, the women who survive this dangerous labor often experience foot drop, infertility, internal scarring that prevents normal sexual relations, and post-traumatic stress disorder.
When a woman returns home with a fistula she is constantly leaking urine, feces, or both. As a result, she will often face stigma and rejection from her own family and community. Every day, we see the devastating effects harsh words from misinformed family and community members have had on the women who receive free, comprehensive treatment from our sister organization in Tanzania, CCBRT.
“Some of [my neighbors] said having children caused this, others told me I was being cursed by witchcraft”. ~ Fadhila
“My step father influenced my young siblings by telling them that my condition was contagious and that they should keep away from me. They were always laughing at me.” ~ Mercy
Thanks to your support, and the support of partners, CCBRT Disability Hospital can provide counseling and therapy to address the emotional and psychological scars left by fistula. They also conduct national awareness raising campaigns to battle the misconceptions surrounding the condition. Coordinating one of the largest comprehensive fistula programs in the world, over 1,000 women were served through CCBRT’s program in 2016.
Fistula in her words
We asked twenty women and girls undergoing treatment at CCBRT how they identify themselves and prefer to be identified by others; they chose words like ‘mama’, ‘businesswoman’, ‘entrepreneur’.
Not one person we spoke to wanted to be thought of as a ‘patient’ or a ‘victim’ of obstetric fistula. The women and girls we serve do not want fistula to define them or their place in their community. As global storytellers, it is imperative that we tell these women and girls’ stories on their terms.
The power of an international platform
Kupona and our partners are in a privileged position, able to give a voice to women and girls who often struggle to make themselves heard even before they are faced with severe trauma. We are inspired by the strength and resilience of the women and girls we meet, and we strive to communicate that when we amplify their stories.
We reflect on this important issue in more detail in our latest blog post. Click here to hear the perspectives of our friends at Fistula Foundation, Johnson & Johnson and EngenderHealth. On International Day to End Obstetric Fistula, we also convened the #HerWords Twitter chat in partnership with CCBRT, Johnson & Johnson and Fistula Foundation. Check out the highlights from the conversation here on our Storify.
We’re emailing to ask for urgent help to secure our place on the GlobalGiving Girl Fund, helping us do more for women recovering from obstetric fistula at the Mabinti Centre in Dar es Salaam, Tanzania. Given your support for the empowerment of people with impairments in the past, we thought you may be interested in showing your support for women recovering from the this devestating birth-related injury.
The Mabinti Centre is a project of our sister organization, CCBRT, where women recovering from surgery to repair their obstetric fistulas, can be equipped to become entrepreneurs in their communities.
We’ve got one more day to win a place on the Girl Fund, which will give us exclusive access to additional funding and unlock matching gifts that will enable us to reach more women in 2017. But we need your help. We need 180 people to take action by midnight EST on March 15th to help us unlock this opportunity.
How can you help?
Your contribution, no matter the amount, takes us one step closer to unlocking support and empowering women and girls like Lidya.
A graduate of The Mabinti Centre, Lidya’s story began with tragedy, but was transformed into one of opportunity and triumph. The trauma and grief that Lidya experienced during the delivery of her children is beyond what many of us can imagine. But, losing her first child at just 2-days-old, raising a child with a disability caused by birth complications, and developing fistula on two separate occasions, has only made Lidya stronger.
“When I was admitted to the national hospital to deliver my first baby, my doctor referred me to an intern. They used a vacuum to assist with the delivery. My baby was born with his brain outside of his body, and he died 2 days later.
After the delivery, my legs were paralyzed. My husband’s family bullied me, and told him to leave me because I was damaged, and wouldn't be able to give him any more children. He deserted me. I couldn't even afford the bus fare to attend the clinic for check-ups.
I married again, and had another child. This baby also got stuck during delivery, and was born with a disability. I was leaking. I was so ashamed that I left my husband. I left Dar es Salaam behind and went to live with my grandmother in our rural village. It was there that I read a leaflet about fistula, and realized I could get treatment. I had my surgery in 2005, and got back together with my second husband.”
Scarred both physically and emotionally by the birth of her first two children, Lidya was determined that her third pregnancy would be different.
“I always say that I ‘bought’ my third child. After all of the problems I’d had in the past, I paid to deliver at a private hospital, to ensure that my baby and I were safe. I trusted my doctor, but just before I went into labor, she was called away. She referred me to the doctor who was responsible for delivering my first baby. Once again, he left me with an intern, even though I begged him not to.
My third child was delivered safely, but the scars from my fistula opened again three days after my delivery. I had another surgery to correct it.
I finished my training at the Mabinti Centre in 2012. I now have a successful business. I go to fairs, and sell my products in my community.
My experience of living with fistula has made me the successful businesswoman I am today. I am now able to pay for my children to go to school, and my income means I can support my own siblings as well.“
In its 10 years of operation, the Mabinti Centre has restored a sense of independence, hope, and purpose to 100 women like Lidya.
Please, give what you can by midnight on March 15th, and share this project with your friends and family and encourage them to do the same. Together we can enable Mabinti to empower even more women recovering from fistula in Tanzania.
Starting today, your generosity could help us win a place on the GlobalGiving Girl Fund, allowing us to transform tragedy into opportunity for more women and girls like Hadidjia.
Hadidjia lived with a debilitating condition, obstetric fistula, for 10 years following the birth of her first child. Now, thanks to a fistula repair surgery at CCBRT, and her training at The Mabinti Centre, she has taken her future into her own hands.
“I lived like this for 10 years, with my mother. My neighbors told me I smelled, and forced me to stay inside. When my mother passed away, I had no one left to talk to, and nobody to look after me. I went to my father’s sister for help, but she told me I was cursed. She chased me away from her house and refused to let me live there. I was fired from two jobs, both times because of the smell."
"When I asked my mother’s family for help, my uncle told me that I needed to get married, and that he had found a man for me. I told him I couldn't get married, and explained why. My family told the man everything, but he wasn't discouraged. He still wanted to marry me. He had heard about fistula before, and he was the one who helped me find help from CCBRT."
"Now that I have had surgery, and I have trained at The Mabinti Centre, I have my own business. I make clothes and bags, and do embroidery and sewing. The money I earn helps me pay for my children’s school fees. I never need to worry about losing my job again, because I am my own boss.”
For the Empowerment of Women and Girls
The Mabinti Centre empowers women recovering from fistula repair surgery with the tools and confidence to start their own business or seek employment. Our new GlobalGiving project, “Give Women Recovering from Fistula a Bright Future” will raise dedicated support for the Mabinti Centre. This project is in the running to win a place on the GlobalGiving Girl Fund, giving us access to exclusive matching donations. We need your help to unlock this opportunity.
How can you help?
A donation from you, no matter the value, is a vote of confidence in the work of Kupona, and a show of support for the women and girls working hard to rebuild their lives at the Mabinti Centre.
You hold the key to unlock their potential.
Last year, you - our GlobalGiving community - gave over $11,000 to help improve the quality of healthcare available to vulnerable people in Tanzania. That’s enough to support comprehensive treatment for 35 children with clubfoot, enabling them to walk to school and play with their friends, as well as provide 5 physiotherapy sessions for 227 children with disabilities, significantly improving their mobility and quality of life.
Your donations didn't just have a direct impact on the people we serve in Tanzania. You also gave us access to nearly $3,000 in additional funding from GlobalGiving and their partners. You unlocked matching funds during GlobalGiving Bonus Days, and boosted our project ranking, attracting the support of GlobalGiving’s corporate partners and promoting our cause to other members of the GlobalGiving community. Every dollar you gave changed a life in Tanzania AND amplified our message, mobilizing your fellow change-makers to contribute to our programs.
This year, we’re committed to making it even easier for you to make the biggest impact possible.
We’re calling 2017 ‘The Year of the Bonus’. We’re participating in more GlobalGiving bonus campaigns than ever before, giving you more opportunities to unlock matching funds and multiply your generosity. We’re going to share even more stories of change and hope, not only to show you your donations in action, but also to help you share your impact with friends, family and colleagues.
Together, we have already taken huge steps toward transforming the face of healthcare in Tanzania. We can’t wait to see how much further we can go in 2017.
The Kupona Team
Happy Holidays from Kupona Foundation!
Since we launched our Year End campaign on Giving Tuesday, our supporters have raised over $7,500 to unlock access to high quality care for hundreds of people living in poverty in Tanzania. Thank you for the part you played in making this happen. If you haven’t yet made a donation to Kupona this holiday season it is not too late to give.
While you were flexing your giving muscles, I was in Tanzania, seeing the impact of your support first hand. While I was there, I met a young girl whose story really left a mark. Jane* is 15-years-old. She developed obstetric fistula when she was 14-years-old after being sexually assaulted by a man in her village. She was then forced to marry the man who attacked her. Not long after, she became pregnant. When the time came to deliver, her husband refused to take her to the hospital. Her baby boy did not survive, and she was left with an obstetric fistula: a debilitating condition that left her with chronic incontinence.
Jane is so young, and yet has experienced more trauma than anyone should have to face in a lifetime. There are clearly many complex issues at play here, but the fact that she is with us and receiving treatment, counseling and eventually family planning education from the team gives me hope that we can change the course of her future.
Jane’s story is just one example of the hundreds of lives rebuilt at CCBRT every day. In the past 12 months, for the first time, our fistula program has served over 1,000 women, reinforcing CCBRT’s position as one of the largest fistula treatment programs in the world. Your support has enabled us to unlock access to high quality, comprehensive treatment for record numbers of women living in shame and isolation across the country.
There are still thousands of women and girls like Jane living in isolation, unable to access the restorative treatment they need. We are doing everything we can to reach them, but we need your help.
If you haven’t done so already, please consider a gift to Kupona this holiday season. It only takes one donation to shift the course of a person’s future. Your donation could be the one that changes everything.
Thank you for your continued generosity. Wishing you a wonderful holiday season, and a happy and healthy 2017.
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