In December, Sahiyo U.S. and TightLipped explored the power of sharing one's story during our “Pain, Stigma, and Sexual Health: Healing Through Storytelling webinar.  After recently chatting with one of the panelists, Grace Culqui, I had the pleasure of interviewing another participant: Lomaris "Lo" Diaz.

For years, Lomaris struggled with vulvovaginal issues which caused her intense pain on both a physical and emotional level. Not even medical professionals were able to understand or sympathize with her plight, leaving Lomaris with a deep sense of isolation.

In our interview, I got to learn about how sharing her story with others changed the game for Lomaris. Through talking about her experiences, she felt liberated from her pain – and indeed, it metamorphosed into a sense of purpose. What Lomaris had to say about the importance of speaking up and reaching out for support was incredibly inspiring, and I believe could be helpful for others also trying to free themselves from their own trauma and hurt – including those affected by female genital cutting (FGC).

What motivated you to participate in the webinar and share your story?

At the beginning of my journey with vulvovaginal pain, I felt this deep sense of loneliness, as if there wasn’t any place in the world I could truly belong to. While I wouldn’t wish for any other woman to go through something like this, the experience made me find others like me. Instantly, I experienced a freedom I had never felt before. The word “freedom” sounds so odd because, at that time, I felt like the pain owned me and there wasn’t any other way out of it—  but community gave me hope. 

I wanted to help other women who, like me, were suffering from both physical and mental pain. After finding a community of people who understood my struggles [through my provider], something changed within me. I no longer felt ashamed about being open about my condition. Instead, I felt a sense of responsibility to share my story to find others like me and remind them that they are not alone.

Looking back, what emotions or thoughts stand out the most from your experience during the webinar? 

During the webinar, I was reminded of the sense of isolation and discouragement I felt when I was ignored as if my concerns about my health were not valid. All the comments made by medical practitioners about my condition rushed through my mind, comments like: 

"It's all in your head," 

"You're being overly dramatic," and 

"Since no one can figure you out, you deserve a life alone or not to live at all." 

That last comment was made as a joke to alleviate the sorrow I felt during the appointment, and to this day, I still can't understand how someone would even joke about it.

Were there specific topics brought up during the webinar that released these emotions?

When Grace shared her story about her IUD anesthetic procedure, her practitioners forgot to inform her they left a large amount of gauze inside her vagina due to abnormal bleeding during her procedure. She then had to endure so much discomfort to moisten the gauze and slowly rip it out. 

I work as an animal anesthesiologist, and it shocks me to hear stories like this, even for my patients who can’t communicate. I thoroughly explain the process, side effects, what owners might expect, and how to prepare themselves to assist their pets better when coming home after an anesthetic procedure. Why would working with a human patient be different when they have lower standards?

What message or insight do you hope readers take away from your insights about navigating sexual health challenges?

For those at the beginning of their healing journey or navigating sexual health challenges, sometimes it’s all about a 50/50 roll of the dice— a gamble of sorts.

Sharing could bring something that connects you to solutions or potentially hurts you, as with my community. In my situation, on a day marked by frustration and just overall exhaustion from my vaginal problem, I shared part of my story with a co-worker. She learned of another doctor familiar with conditions like mine because of her husband’s PT doctor. And that’s when my healing journey started. 

You see, for me, life is almost always a 50/50 gamble. Sharing can sometimes cause pain or shame, but there’s also a 50% chance it could bring answers and help. How can I limit myself to one side of the coin? I feel that if there’s a chance of experiencing hurt, there will be a moment when I will receive the help I need, and I did. I am so glad I rolled the dice again despite how painful it was in the past.

Is there any additional advice or encouragement you'd like to share with individuals facing similar journeys?

Every person's journey is unique, and sharing our experiences can sometimes lead to negative emotions such as discouragement, disappointment, and hopelessness. When people don't take the time to listen and understand, their words, actions, and advice can hurt us. But, despite these challenges, there are safe spaces and supportive communities for you. You are not alone in this.

If you want to hear more about Lo’s full story, be sure to watch the webinar here.

By: Umme Kulsoom Arif 

Pronouns: they/them 

Age: 29

Why Did You Want To Attend The Activist Retreat?

I attended the Activist Retreat for the first time virtually in 2022, and it was a really affirming experience over those three days. However, I was really excited for an in-person retreat, especially because I had not really interacted with other Bohras who had experienced FGM/C or were even open to talking about the practice. I wanted to meet others who are doing the work that I was doing. 

I’ve always treated the Activist Retreat as a part of the healing of my inner child and as a part of my journey through the five stages of grief.  For the first year I attended, I was in the stage of anger over what had happened to me. During the second year, it was about forgiveness, because my mother and I have had some conversations about khatna since that first retreat.

What Have You Learned or Most Enjoyed at This Retreat?

I really was blown away by the sheer scale and range of ages of a lot of people. I’ve always thought that FGC activism was a young person's job. Our generation was doing the work, because previous generations had ostensibly failed us. 

So I was really blindsided – yet also impressed and pleased to see – that we had moms and grandmothers in the space talking about how they prevented their daughters from being cut, or they themselves were saved from it. Learning that this work had been going on for longer than I have been alive was one of the most beautiful things to hear and just really empowering.

Why Are You Involved in the Movement Against Female Genital Cutting?

I was five when I was cut, and I was 19 when I found out. At the time that I found out I had been cut, I had one younger cousin and she was also cut despite my family's best attempts to prevent it from happening. For me, it's become important to change the narrative around the issue because even if our families try to prevent it from happening, it still happens to those we love.

That realization was really powerful and frustrating for me, because we deserve better out of our culture and our faith. It's also important for me as somebody who sees how much my mom loves being a Bohra, to make it something that she doesn't have to feel guilty or justify being because of the practice.

How Do You Think That This Retreat Will Inform Your Work as an Activist?

We had some interesting conversations at the retreat, especially around the Detroit case, and it forced me to process a lot of empathy for those who unfortunately do practice FGM/C. I also had the realization that the practice almost leads to a sort of cult-like mentality. As much as we know that “do no harm” from doctors is part of their oath, the harm of FGM/C does not seem to be seen as harm. That has changed a lot of my anger towards the culture, and it has just forced me to be a little bit kinder in thought to those who still support and practice it — especially as we are trying to change their minds.

What Work Are You Doing Currently or Are Hoping to Do In the Future?

I'm working on presenting a paper for the Association for Asian Studies Conference on March 14-17. It’s about the intersection of queerness and FGM/C, and what it means to be a non-binary survivor of FGM/C in a space that is incredibly female-focused. One of the things I processed at the retreat was that these spaces— despite the fact that I use they/them pronouns—  are where I am most often referred to as a woman. That’s because most people consider the practice to be centered around womanhood and femininity.

As I don't engage with womanhood in a traditional manner, this can be difficult. So my work is centered around trying to reframe it for myself and other non-binary survivors. The harm was done to us was because of a perception of womanhood that was forced upon our bodies. And therein lies the second injustice of FGM/C for non-binary survivors – the denial of our ability to choose our own identities over the one that is placed upon us. That's what my paper is tackling.

How Did This Second Retreat Make You Feel? 

I felt empowered. The retreat always makes me feel powerful and I find myself leaving with a lot of clarity for what my next steps for my activism are in the coming year. One of my big goals that came out of the retreat was finishing the paper, as I mentioned previously. 

Also, finding others who had survived FGM/C – speaking to these people who had such varied lives, that weren't just centered around being a survivor –  makes me feel like we're not alone. There is a line by Rumi, the poet, “Ours is not a caravan of Despair”, and that line comes to me every time I think about the retreat—this is not the Caravan of Despair that we think it is when we're alone.

Do You Have Anything Else You Would Like to Share? Something You Can Share With Other People Who Might be Interested in The Retreat?

If you are ever afraid that you're not going to fit in because you don't fit the traditional mold of a survivor—you will. Everybody is very welcoming.

Related:

• Volunteer spotlight: Umme Kulsoom Arif
• On being a Nonbinary Survivor of FGM/C

By: Jaha Dukureh, a Gambian anti-female genital mutilation campaigner and the founder and executive director of Safe Hands for Girls. Jaha was named TIME Magazine's 100 Most Influential People for 2016 and was nominated for the Nobel Peace Prize in 2018.

After I spent years campaigning to outlaw female circumcision, finally my country started to listen. In 2015, The Gambia banned Female Genital Mutilation (FGM) and imposed penalties on those who perform or practice it. As a survivor of FGM who played an instrumental role in this fight, I felt ecstatic when I heard the news.

But it was a joy that wasn’t to last.  If certain politicians have their way, the law will soon disappear and more young children will have to suffer the same pain I did. Some, like my half-sister, may lose their lives.

As a survivor of FGM born and raised in The Gambia, a Serahule, and a proud Muslim, my journey has been one of pain, resilience, and unwavering determination. I have learned that it is important to recognize my roots and the challenges that come from speaking up, especially if you are a woman and of my background. Today, as I reflect on the challenges that lie ahead, I am compelled to raise my voice in defense of the progress that has been made in protecting our daughters, our sisters, and future generations of women and girls.

I speak up for myself, for my generation, and for the millions of girls who will hear our story and say enough is enough. I will never perform this practice on my daughter. That statement, in itself, is the ultimate victory. And yet sadly, there are still many parents in The Gambia who are fighting for this practice to live on, ignoring our cries for it to end. 

Still, we refuse to be silenced and stand idly by as our daughters' bodies are mutilated, their futures stolen, and their dreams shattered. That's why, as the world celebrated women's achievements during Women’s History Month in March, we launched a petition to stop the repeal of the ban on FGM in The Gambia. 

But to be effective – to actually be heard – we need all of you to help tell our parents, “Enough is enough.”

Our campaign has given voices to many young girls who continue to unapologetically lead movements to help change social norms. But today, we also need to be honest with ourselves. As much as I am emotionally invested in the campaign, I have always recognized my limitations, especially when I decided to bring my campaign home. If you have the chance to watch Jaha’s Promise, you will understand what I am trying to explain. I was returning home to join a decades-long campaign to end this harmful practice, but it wasn’t easy. 

As young people, we developed a whole society approach to eradicating the practice. This required us to organize but also to engage with those who had different views than us. Those Gambians for whom FGM is considered a sacred passage that women have to go through. Those fathers, like mine, who gave consent to the practice without understanding what we go through.

Like in many parts of Africa, FGM remains a deeply entrenched tradition in The Gambia, affecting a significant portion of the population.  According to the United Nations Population Fund, 75 percent of women and girls aged 15-49 have undergone some form of FGM. This practice cuts across ethnic, religious, and cultural boundaries, affecting various communities nationwide. If lawmakers overturn the law now, the numbers will only increase.

The proposed repeal is not just a legal issue; it is a moral imperative, a test of our humanity, and a reflection of our values as a society. It sends a dangerous message that the rights and dignity of girls are expendable, that their bodies are mere vessels for the preservation of harmful traditions. 

But we know better. We know that FGM is a violation of human rights, a form of violence against women and girls, and a practice that should end with us. That's why we are mobilizing, organizing, and uniting to raise the alarm for the rights of all girls to live free from fear and harm. 

Our petition is more than just signatures on a page; it is a collective call to our parents to listen to the voice of reason and understand the harm that we go through. As a survivor, I know firsthand the pain and trauma inflicted by FGM. But I also know the power of resilience, the strength of solidarity, and the hope that springs from the darkest of places. 

Join me – join all of us survivors – as we raise our voices, protect our girls, and say no to the repeal of the ban on FGM in The Gambia.  Sign our petition, raise awareness, and stand in solidarity with survivors of FGM. Together, we can protect our girls and build a world where every woman and girl is empowered to live a life of dignity, freedom, and equality. We owe it to our daughters, our sisters, and ourselves to mobilize our communities and demand accountability from our leaders. 

Our parents aren't listening to us — our politicians aren't listening to us — which is why we need your voice, too. With your help, our collective voices will be so loud they’ll be impossible to ignore.

#StopFGMRepealGambia #ProtectOurGirls #EndFGM 

Jaha Dukureh, Founder & CEO of Safe Hands for Girls

Council member Nalafem Collective

The Gambia

Related links:

• Behind the Wall by Gambian activist and FGC survivor Isatou Jallow
• UNICEF released new data on global prevalence of FGM/C 

A bill to protect children from female genital mutilation/cutting (FGM/C) in Connecticut (CT) has not been raised by the Connecticut Judiciary Committee in the 2024 legislative session. This news comes as a shock to many survivors of FGM/C and anti-FGM/C activists who have been campaigning for the bill to be introduced. The bill would have been sponsored by Rep. Jilian Gilchrest (D), and would have created education and outreach programs, issued civil remedies for survivors, and created better access to healthcare for survivors of FGM/C. Additionally, the bill would have made it clear that FGM/C is a criminal offense in Connecticut. Currently, Connecticut is only one of nine states left in the U.S. that have no explicit legal protections against FGM/C. 

Over 2,600 girls are at risk of experiencing FGM/C in Connecticut. Around the country, over half a million women and girls are at risk or are survivors of the practice, according to the Centers for Disease Control and Prevention. Additionally, Connecticut is surrounded by states that have outlawed the practice including New York and Massachusetts. By not following suit, Connecticut could become a safe haven for people who are seeking to practice FGM/C on girls from other states where the practice is illegal. 

Let's urge the Connecticut legislature to prioritize the passage of this crucial legislation because every girl deserves to grow up safe and empowered. Join us in advocating for the protection of girls from female genital mutilation/cutting (FGM/C) by calling on your representatives in Connecticut to take action. Your support is crucial in safeguarding the rights and well-being of vulnerable children in Connecticut. 

Sign this call to action now!

For more information, please visit the CT Coalition website.

By Sheena Vasani

After Sahiyo U.S. and TightLipped hosted the webinar, “Pain, Stigma, and Sexual Health: Healing Through Storytelling” in December 2023, I spoke to Grace Culqui to learn more about her experiences as a webinar panelist and chronic pelvic pain survivor. 

During the webinar, Grace opened up for the first time in a public setting about her ten-year struggle with Vestibulodynia, Pelvic Floor Dysfunction, and Lichen Sclerosus. In our interview, we got to learn more about her process of connecting with others and sharing her story. I found her insights to be both inspiring and honest, and believe her lessons in protecting your peace and finding safe people could be helpful for others who experience pain, trauma, or harm,  including those affected by female genital cutting (FGC).

For Grace, it wasn’t as if she woke up one day feeling ready to share her story with the world. Rather, reaching this point was a slow process; a culmination of multiple conversations with what she calls her “safe people.” But first, she had to find them.

“I learned in therapy [...] that someone may not be a bad person, but they may just not be a safe person to talk to you about these types of things.” 

 “If you've never shared your story before, with [safe] people you'll get that validation and you'll get the love that you should receive when sharing a hard story.” 

As a result of those conversations, she began to slowly feel safe enough to share her story with others who have gone through similar experiences. It’s in the TightLipped community where Grace found people who can empathize and truly understand. 

“I have always gotten validation and reassurance [from Tight Lipped]. When I joined, I felt finally I had found my community. Starting to hear other people's stories, [I realized] that I'm not alone in what I was going through, even though I felt alone for so long.”

Ultimately, that support inspired her to participate in the webinar.

“When I was asked to participate [in the webinar], I immediately wanted to be a part of that,” she said. “I felt like if I could aid in helping somebody else feel the way that I felt when I’ve heard people sharing their stories, then I wanted to be a part of that [...] change.”

She couldn’t believe how people responded when she finally opened up for the first time in the webinar.

“Once I finished speaking, the comments – the chat section – was just filled with people relating to me and thanking me for sharing – I was not expecting that at all. And I was like, oh my gosh, I'm trying not to cry on this recorded webinar.”

Grace emphasizes that just because she was able to participate in the webinar, it doesn’t mean she’s no longer fearful about speaking out.

“Sometimes it can seem like [...] when you're listening to somebody's story and they're giving this amazing advice, it [feels] like, ‘Oh, I need to get to that place.’ I feel like when it comes to things like chronic pain, it's such a roller coaster type of experience though.”

“For me, I want to find somebody who will validate and love me through my pain, which isn't  something that I've ever experienced before,” Grace adds. “I'm so scared for the next time I am going to have that conversation with a partner, so it's all a learning process.”

It’s her safe people that have, over time, changed how she relates to that fear and her pain in general. 

“I'm still young and I still don't have it all figured out, but the biggest thing that's really helped me is just to remind myself, “it's okay for it to suck, it's okay for it to be emotionally painful, and it's okay to feel the emotions. At the same time,  always give yourself that grace and protect your peace’.”

She’s also learned tools and techniques that have given her strength.

“[Give] yourself grace and [realize] that person’s response to something so vulnerable is not reflective of you or what you shared. That is entirely on that person to react in that way, and remind yourself that's not a safe person to have in my life – at least in this time.”

What’s more important, Grace says, is to honor where you’re at first though. If you don’t feel ready to share your story at all, you don’t have to – even if you see others doing so. 

“Protect yourself and protect your peace.”

“Just keep implementing that positive self-talk,” she adds.“Because eventually you're going to start telling more safe people, you're going to start feeling more validated, and you're going to start to believe that it's true.”

If you want to hear more about Grace’s full story, be sure to watch the webinar here.

By Rachel Wine

On March 8th, 2024, UNICEF released Female Genital Mutilation: A Global Concern, a new report with updated data on the global prevalence of female genital mutilation/cutting (FGM/C). Compared to data released eight years ago, this reveals a 15% increase in the practice; survivors now number at 230 million. Data in the report also indicates slow progress to ending FGM/C, with a lag behind the population overall, and stagnation in some countries. One such country, The Gambia, recently voted to repeal its ban on FGM/C. The report asserts that, “though the pace of progress is picking up, the rate of decline would need to be 27 times faster to meet the target of eliminating female genital mutilation by 2030.”

While this report advances our understanding of FGM/C as a global practice and provides more relevant data for our work to end FGM/C, it is worth noting that Asian countries like India and Indonesia, and Middle Eastern countries like Pakistan and Iran are missing entirely. With the absence of this crucial data, we have no way of knowing the full scope of this harmful practice. This can be attributed to a lack of governmental support, as well as inadequate funding.

Sahiyo recently participated in an event that draws attention to the lack of adequate funding in the FGM/C sphere, of which the real obstacles in our effects to enact change can be seen in this report. “From Rhetoric to Reality: Closing the Funding Gap to End FGM/C”, a parallel event at the 68th U.N. Commission on the Status of Women meetings, was hosted by The Global Platform for Action to End FGM/C in partnership with the United States Mission to the United Nations on March 15th.

The Global Platform For Action to End FGM/C led the charge at the 2023 Women Deliver Conference to acknowledge the harms of insufficient funds in the work to end FGM/C. According to a Joint Letter by the Global Platform:

“By investing $2.4 billion by 2030 we could end FGM/C altogether in 31 priority countries. There is also a need to expand funding beyond the 31 countries which have national prevalence data on the practice; and provide funding for anti-FGM work in countries which have not traditionally been prioritized, including in Asia and the Middle East. Yet only $275 million in development assistance is available leaving a funding gap of >$2.1 billion; and these funds are not available proportionately across all countries where FGM/C is known to take place.” 

This statement certainly manifests in the data of the UNICEF report. 

In collaboration with hundreds of activists, grassroots organizations, international NGOs and academics who gathered at the Women Deliver 2023 Conference in Kigali, Rwanda, the Global Platform has created the Kigali Declaration to call for an increase and shift of funding to grassroots organizations, and a convening of a Global Summit for increased commitments and investments. You can sign onto the Declaration here, and join the growing number calling to #closethefundinggap.