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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.