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 women we serve.
On International Day to End Obstetric Fistula 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. Sometimes, the women at The Mabinti Centre who are recovering from fistula, still struggle to put their experiences into words. Women living with and recovering from fistula 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
CCBRT provides counseling and therapy to address the emotional and psychological scars left by fistula, and conducts 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. Since 2007, 100 women have been empowered with the skills and confidence to start their own business and build a new life after fistula through training at the Mabinti Centre.
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, of the triumphant ladies you’ve empowered at the Mabinti Centre, and we strive to communicate their strength when we share 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.
Over the last two weeks, our community sprang into action to unlock access to exclusive grants and matching funds during the GlobalGiving Girl Fund Campaign. The competition was fierce. While we didn't secure a place on the Girl Fund this year, the last two weeks were still a major victory for the women and girls we serve.
Together, you raised almost $10,000*. Thank you so much for your gift.
Funds raised will support annual training allowances for 15 women and girls recovering from obstetric fistula. Allowances provide women and girls with an income during their time at Mabinti, so they can afford to focus on their training and rehabilitation. After training in sewing, screen-printing, beading, business skills, English and life skills, graduates are empowered to start their own businesses or secure employment, helping them to become financially independent.
Thanks to you, more women and girls at the Mabinti Centre can write a new chapter in their story of healing. Equipped with the skills to move forward, they are building their futures, one stitch at a time. Read more about the Mabinti Centre
Asanteni sana (thank you all) for your support,
The Kupona Team
Stay tuned for more stories from the field when Abbey returns to the U.S.! Follow us on Facebook, Twitter and Instagram to get the latest news.
*Total raised through GlobalGiving project and other platforms
We have just one day left to unlock exclusive support for women and girls training at The Mabinti Centre.
Your generous gift has kept us in the race. Now, we need your help to get us across the finish line. We’re asking you to spread the word. Share the link to this project on your social media pages, and encourage your contacts to give.
We are just 180 donations away from unlocking matching gifts that will enable Mabinti to reach more women like Rhoda.
In 2011, Rhoda became pregnant for the first time. Her parents took her to a nearby hospital that was crowded with patients, understaffed, and under resourced. Amidst the chaos of an overwhelmed labor and delivery ward, Rhoda labored for five days. Tragically, her baby was stillborn, and shortly after her delivery, Rhoda discovered she was leaking urine.
Her parents took her to a hospital to be examined, and the doctors told her the fistula had formed because Rhoda was stubborn. The doctor insisted she must have refused to be stitched up after her traumatic delivery, and that stubbornness was the only reason she could be living with fistula.
Now 23-years-old, Rhoda still struggles to recount that doctor’s visit. “My heart is beating so fast talking about it” she says.
Fortunately, Dr Robert, a member of the CCBRT team conducting training on the labor ward was called to come and examine Rhoda. He explained that her fistula was treatable, and it was an injury caused by her prolonged, obstructed delivery. He referred her to CCBRT to receive free, comprehensive fistula repair treatment.
“My family had seen banners and posters about fistula around Dar es Salaam, but we didn’t think this was the same condition that I had,” says Rhoda. “After speaking with Dr. Robert, we were convinced that CCBRT could help. I was admitted to CCBRT’s Disability Hospital where I underwent surgery to repair the fistula. When my mother and father heard that I was cured, we rejoiced as a family.”
When I left the Disability Hospital, CCBRT staff asked if I wanted to join The Mabinti Centre. They said I would learn skills like sewing, beading, and crochet, and could start my own business. I agreed to join the year-long training program, and I met other women who had recovered from fistula and learned how to become small business owners.”
Since 2006, Mabinti has equipped 100 former fistula patients with the skills to become independent entrepreneurs or to find meaningful employment.
We have one day left to secure a place on the GlobalGiving Girl Fund and unlock funding for women and girls like Rhoda. Please share the link to this project with your family and friends as we make one final push for the empowerment of women and girls at the Mabinti Centre.
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 obstetric fistula for 10 years. Now, thanks to a fistula repair surgery at CCBRT, and training at The Mabinti Centre, she has taken her future into her own hands.
“I had labor pains for two weeks before I gave birth in a hospital. My baby survived. I woke up with the sheets covered in urine, and at first I thought the baby was wetting the bed. When I realized it was me, I told the nurses and they said it was normal after giving birth. They gave me pills to take for 3 months. The problem didn't stop, and eventually my baby’s father left me because he said I was spoiling the mattress.”
“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. This GlobalGiving project will raise dedicated support for the Mabinti Centre, and 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.
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 over 100 women like Lidya.
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