By Xenobia

Country of Residence: India

There are those who talk about change, and then there are those who do things and bring about the change.  I would like to tell you about the time I decided to be a part of the Sahiyo’s Activist Retreat in Mumbai, and met such wonderful people who, in my eyes, were nothing short of superwomen. 

I cannot even begin to describe how amazing it is to meet like-minded people all driven by the same cause. It is honestly inexplicable. In today’s times, do you know what good, honest peer support feeling is like? Let me tell you: it was out of this world amazing! Did a couple of seemingly insignificant days change my life? Yes, they did. Prior to this event, was I feeling anxious and apprehensive about what it would turn out to be like? Oh, extremely. Was I nervous? Yes. Was I also curious about what would I take away from this retreat? Yes. Did I think it was going to be all about a bunch of women getting together to purely rebel against a cause? I will admit, yes. 

I knew about Sahiyo, and the cause that they are fighting for. I admired and respected them because I had been fighting for the same cause all my life, too, but silently. Many members of the Bohra community do not react well to independent thinkers, so it takes a lot of courage and true liberation to speak your mind on a public platform. Naturally, one ‘black sheep’ tends to have heard about the other. But immense respect for them aside, I was partly curious about what I would really learn here, and partly interested in what could be done to rightly channel the feelings I felt toward the people who endorse female genital mutilation (FGM). 

Needless to say, I couldn’t stop talking about this retreat when I returned home! There were some brilliant, fantastic people there from all walks of life, sharing their experiences, sharing their stories and how they heard of FGM, how it has impacted their lives, and what they are doing about it. Our co-hosts Insia and Aarefa were warm as ever, right from introductions and group bonding activities, to efficiently addressing counter arguments and introducing us to a world of relevant introspection, as opposed to traditional garish rebelling. There was also a talk given by a reputed gynaecologist, where we learned so many essential truths about the details of FGM that no one else talks about. So enlightening! 

It was as if there was a strange connection between all of us toward the end of the program. It’s not news that Bohras suffer from a major identity crisis anyway, considering most cultural aspects are borrowed from different parts of the world with no real roots anywhere. For someone who always found it hard to really fit in anywhere, it was as if I had found home at last. In spite of everyone at the retreat coming from such different backgrounds, locations and mindsets, it was really amazing.

I, personally, have always felt very strongly about FGM/C and the concept of a random third person deciding what should be done with my body without my consent. But this experience and interaction has not only changed the way I see things, but has also made my resolve and conviction stronger – about fighting for every girl child out there, subjected to any such torture and abuse, until I have no life left in me, irrespective of how long it takes. 

For showing me how to efficiently channel all that I feel toward all forms of injustice done to women, and for this beautiful chapter of my life, I will be forever grateful to Sahiyo.

By A. Renee Bergstrom, EdD

Country of Residence: United States

Renee chronicles her experiences with American physicians from the time she was cut at three years of age until seventy years later when she became an advocate against female genital mutilation. She also shared her story during the Sahiyo Stories Workshop to encourage other women to speak out. 

• 1947—age 3—My mother took me to a doctor because she was concerned that my little face turned red when I touched my clitoris. This fundamentalist Christian physician believed masturbation to be a sin and practiced his religion with a scalpel in a Wahpeton, North Dakota, clinic. He removed my visible clitoris. Some of my sensitive tissue fused to my inner labia.

• 1959—age 15—I drove myself to the same clinic not realizing this was where my mutilation took place. I complained to the doctor about the uncomfortable tugging sensation from my scar. He did not examine me or offer a solution. (Separating the scar may have solved the problem.) Instead, he gave me a brochure on the sin of self-pleasuring.

• 1965—age 21—During my premarital examination (why were these required?), I told the doctor I was not sure I would be able to have “normal” orgasms like other women. He faced the wall and did not comment. 

• 1967—age 23—During my first childbirth, my scar did not stretch, so second stage labor came to a halt. I was given anesthesia against my will and did not wake up until four hours after our daughter was born. My obstetrician had performed an extensive episiotomy to enable her to be delivered vaginally. He did not mention the details of my birthing experience while I was in the hospital or at my six-week postpartum checkup. Later, when intercourse was uncomfortable and my vagina seemed lumpy, I returned to discuss the problem. He showed me pictures of normal female genitalia in an anatomy book and said, “Renee, you don’t look like other women.” He thought I could have had a bike accident as a child. He was shocked when I told him my story. I believe he prescribed lubricating gel to use until I healed completely, which took a couple of months. 

• 1968—age 24—When I was pregnant with our second child, I made an appointment with the same obstetrician. I waited and waited in the examination room and finally another obstetric physician came in. He said the other doctor was leaving to put IUDs in African women and would not be available to provide my care. In retrospect, I think his experience with me touched him deeply and he couldn’t face me to say goodbye. I came home crying and my husband thought there was something wrong with the baby. I had hoped to continue my obstetrical care with this compassionate physician so I felt a great loss. The next doctor assigned to me urged me to allow him to connect me with William Masters and Virginia Johnson of the research team. He thought they would be interested in my sexual response and would pay me well to participate in experiments. He suggested this at every visit and I repeatedly declined. He anesthetized me for the delivery. I awakened in a cold delivery room with my feet still in the stirrups, my episiotomy unstitched and my struggling son in a bassinet out of my reach. The OB team had left me to attend to another woman’s emergency. 

• 1970—age 25—I gave birth to our second son eleven months after his brother was born. I was semi-awake as he moved through the birth canal. The baby urinated immediately and the doctor held him so he peed in my face. I missed the first two birthing experiences and this rude, unfeeling man tainted the one when I was alert. Being cut took away my dream of the deeply spiritual joy of birthing. 

• 1981—age 37—I began my End FGM advocacy when I received funding from the Women’s Desk of the Lutheran World Federation to spend two weeks in Geneva, Switzerland, discussing the issue with international organizations there. My empathetic primary care physician was required to write a letter confirming that I was indeed cut. 

• 1981—In preparation for my 1981 Geneva trip, I attended the University of Minnesota Week of Enrichment designed to help doctors, pastors and therapists respond compassionately to those who bring a variety of sexual issues to them. This allowed me to practice telling my story in a small group supportive environment. When word got out that I was in attendance, a surgeon came and offered to create a faux clitoris for me with one of my nipples. I thought about it for awhile, then declined the offer in the parking lot while she stood next to her car. She was visibly angry, so I responded, “Why should I allow another part of my body to be mutilated when sexual intercourse is sufficiently satisfying?” 

• Later 1980s—age 40s—Two physician interactions stand out in my memory. I saw a dermatologist for a boil on my labia. When I shared my genital history, she was furious. Such a refreshing response! Previous physicians hid their emotions as if to protect the medical profession. The second experience was disturbing. I fell on metal bleachers at our children’s track meet with a resulting large hematoma on my labia. The beautiful young emergency room physician appeared to suggest that my husband had caused the injury, probably because she saw my strangely mutilated body. I didn’t provide details because there were thin curtains separating me from other patients. A couple of weeks later, we read that she walked into a lake and ended her life. I wonder if she just couldn’t tolerate witnessing the abuse cases she faced in the E.R. 

• 1997—age 53—My genital scar began to separate. My very caring female primary care physician helped me deal with the pain and taught me to massage the area to speed the process, finally ending fifty years of the annoying tugging sensation. 

• 2017—age 73—After several years of sharing my story with compassionate physicians in the Academy of Communication in Healthcare, a male senior faculty member apologized to me from the medical profession for what I suffered. Accepting his apology helped free me to move forward with END FGM advocacy.

by Lorraine Koonce-Farahmand

In the Zero Tolerance campaign to end Female Genital Mutilation (FGM), what has been noted is the arc of progress. Increasingly, women and men from practising groups have declared support for ending FGM; and in several countries, the prevalence of FGM has decreased significantly. A BMJ Global Health study reported that the rates of FGM have fallen dramatically amongst girls in Africa in the last two decades. Using data from 29 countries going back to 1990, the BMJ study found that the biggest fall in cutting was in East Africa where the prevalence rate dropped from 71% of girls under 14 in 1995, to 8% in 2016.  Some countries with lower rates – including Kenya and Tanzania, where 3-10% of girls endure FGM – helped drive down the overall figure. Nevertheless, UNICEF’s groundbreaking report shows that whilst much progress has been made in abandoning FGM, millions of girls are still at risk.

Flourishing against this backdrop is the compromise of medicalisation of FGM that competes against progress in the Zero Tolerance Campaign. A disturbing number of parents are seeking out healthcare providers to perform FGM. According to the World Health Organization (WHO), medicalisation is when a healthcare provider performs FGM in a clinic or elsewhere. Such procedures are usually paid for under the assumption that medicalisation is not FGM, and is done to mitigate health risks associated with the practice. Consequently, in recent years, the medicalisation of FGM has taken place globally, particularly in Egypt, Indonesia, Kenya, Malaysia, Mali, Nigeria, Northern Sudan, and Yemen. In many of these countries, one-third or more of women had their daughters cut by medical staff with access to sterile tools, anesthetics, and antibiotics. The non-governmental organization, 28 Too Many has investigated the involvement of health professionals and has highlighted what must be done to reverse this trend. 28 Too Many reported that the medicalisation of FGM in Egypt is an enormous challenge. Currently, 78.4% of incidences of FGM in Egypt are carried out by health professionals. Egypt had the highest rate of health workers performing FGM at 75%, with Sudan at 50% and Kenya at 40%. A 2016 study by The United Nations International Children’s Emergency Fund (UNICEF) and the Africa Coordinating Centre for the Abandonment of FGM/C (ACCAF) also found that FGM is increasingly being performed by medical practitioners.   

Parents and relatives seek safer procedures, rather than outright abandon FGM. The medicalisation trend has conveniently forgotten that FGM violates women’s and children’s human rights to health, to be free from violence, to have the right to physical integrity and non-discrimination, and to be free from cruel, inhumane, and degrading treatment. The “just a nick” is essentially gender-based violence (GBV). What is being “nicked” is still part of a woman’s labia majora, labia minora or clitoris. The medicalisation of FGM perpetuates that women are inferior human beings. This is not in harmony with international human rights standards.

There is also clearly an economic incentive for promoting medicalisation. Medical personal perform it for financial gain under the premise that if the crux of the issue is the health side effects and pain, by using sterilised instruments and medication the problem has dissipated. The misguided assertion that medicalisation is a viable option is ignoring the fact that all types of FGM have been recognised as violating human rights. These rights that have been codified in several international and regional treaties mirror worldwide acceptance and political consensus at various UN world conferences and summits. Committees such as The Committee on the Elimination of All Forms of Discrimination against Women, (CEDAW), the Committee on the Rights of the Child, and The Human Rights Committee have been active in condemning FGM. Medicalisation goes against the principles enshrined in these treaties and conventions.

The disturbing medicalization trend continues to argue that this less severe form of FGM can protect girls and women from harm. This was echoed in The Economist article of June 18th, 2016, ‘Female Genital Mutilation: an Agonising Choice’Female Genital Mutilation: an Agonising Choice’. In the article, it was asserted that because three decades of campaigning for a total ban on FGM have failed, a new approach is warranted. The article advocated “nicking” of girl’s genitals by trained health professionals as a lesser evil. This reasoning was echoed in the Journal of Medical Ethics by two U.S.-based doctors, Dr. Kavita Shah Arora, Director of Quality, Obstetrics, and Gynaecology at the MetroHealth Medical Center in Cleveland, and Dr. Allan Jacobs, Professor of Reproductive Medicine at Stony Brook University. They wrote that “we must adopt a more nuanced position that acknowledges a wide spectrum of procedures that alter female genitalia.” They assert that they do not believe minor alterations of the female genitalia reach the threshold of a human rights violation. They also asserted that the nicking of the vulva and removing the clitoral hood should not be considered child abuse. They posit that by undergoing these acceptable procedures in the U.S. during infancy, girls can avoid the risk of being sent abroad for more extensive procedures.

These doctors and writers from influential respected journals are often held in high esteem by decision-makers, policy-makers, and experts. However, the advocation of medicalisation grotesquely undermines the hard and courageous work undertaken to end FGM worldwide. The medicalisation trend has ostensibly failed to recognise that the proposal of removing the clitoral hood and “just nicking” the vulva contradicts the WHO’s statement that there is absolutely no reason, medical, moral or aesthetic, to cut any part of these exterior organs.

There are compelling reasons why the medicalisation of FGM is fundamentally wrong.

• The medicalisation is and would be carried out on young girls between infancy and the age of 15. Medicalisation is an attack against the sexual and psychological integrity of young girls. Many are not in a position to say no, unable to give informed consent or to effectively resist the practice.

• Medicalisation reflects a deep-rooted inequality between the sexes and constitutes an extreme form of discrimination against women. In some communities in order to be married a female is not considered an adult and “marriageable” without undergoing FGM, which may be performed to define her gender and/or ethnic identity. In many African communities, marriage is a women’s predominate source of economic survival. The medicalisation trend reinforces and supports this lack of choice women must make in order to be accepted in their society.

• Accepting certain types of FGM would lead to confusion for communities and health professionals. It will adversely affect the work done on raising awareness of FGM and prevention and protection of girls.

• The risk of a well-founded fear of persecution would be seriously undermined for asylum seekers. Asylum seekers with potential claims for international protection, either for themselves or for daughters, could plausibly be denied refugee status if confusion is created on whether or not the type of FGM they would be potentially subjected to constitutes a well-founded fear of persecution.  

The medicalisation of FGM is not an appropriate response to the health risks associated with FGM. All FGM causes a variety of negative outcomes for the health and psychological well-being of women and girls. Medicalisation fails to eliminate long-term gynaecological and obstetric complications, as well as the lifelong emotional, psychological and sexual problems. It does not prevent the feelings of anxiety, betrayal, depression, low self-esteem, panic, phobia nor other psychological issues. As FGM has no proven medical benefits, as professionals who have sworn to the Hippocrates oath to do no harm, ultimately, it is unethical to contribute to the continuation of a procedure that is quite harmful and disabling for women. Medicalisation of FGM gives it an aura of normalcy, legitimacy, and acceptability. The mutilation of females is outrageous when considering that the alterations proposed are both traumatic and life-changing.

An additional concern of the medicalisation trend is the bleak message that removing a female body part for non-medical reasons is acceptable as it is just a “nick.” Who will be there to determine the measure of the “nick”? What part shall be nicked? The clitoral prepuces? The labia minora? Near the special receptacles of nerve endings that are clustered in the clitoris?  The skin of the inner surface of the labia? Is the medicalisation trend assuming that this undefined “nicking” by a chosen trained professional now is safe and correct?

The implication that it is just a nick obscures and trivializes the underlying degradation that this nick imposes on a woman and the senseless attack on women’s’ genitals for no other reason than that they are female. It reinforces the sense of inferiority on this already marginalised gender.

FGM is not open for debate without violating international law and medical ethics. As long as it is accepted in any form, FGM will thrive. Partial FGM is simply not acceptable. A nick is simply unacceptable.  The key phrase is zero tolerance.

More about Lorraine:

 Lorraine is is a British solicitor and a New York lawyer. She is currently an international law professor in the Anglo-American Law degree programme at the Universitié De Cergy where she lectures on gender law and human rights, and at the Universitié De Paris-Dauphine where she lectures on the Legal Aspects of Gender Violence. She is often an invited speaker on GBV and FGM. Recently, she was invited as a speaker to lead the medicalisation workshop at the End FGM European Network conference that was held in Paris.

This year, Sahiyo looks forward to continuing our partnership with StoryCenter, a community-arts organization that has for 20+ years worked with grassroots groups on participatory digital storytelling and media arts projects.  

To apply to be a participant, fill out the application! 

In 2018, Sahiyo and Story Center worked together on Sahiyo Stories, and will be expanding the project into this next chapter- The Voices to End FGM/C Project in 2019.

The next phase of this project will guide ten women who have experienced female genital mutilation/cutting (FGM/C) through an online digital storytelling workshop and support them in sharing and audio recording their stories.

We are seeking women interested and available to participate in the workshop, which will be held via four webinar sessions scheduled for: Wed. June 5, 12, 19, and 26, 2019 (one-hour sessions, times to be determined). The stories will be illustrated with a combination of personal images (photos and video clips) to be provided by the storytellers, and images contributed by participating women artists. Final editing will be done by StoryCenter, with the goal of completing a set of videos in August 2019.

If you or someone you know would like to get involved as a storyteller with this project, please submit expressions of interest no later than May 15, 2019, through this online form.

View sample stories from our previous work with survivors of FGM/C, and check out Sahiyo’s blog posts about the Sahiyo Stories project.

If you have any questions, please get in touch with Amy Hill, from StoryCenter, at This email address is being protected from spambots. You need JavaScript enabled to view it.; or Mariya Taher, from Sahiyo, at This email address is being protected from spambots. You need JavaScript enabled to view it.

Fill out this form to get involved.

To download this information as PDF, click here.

By Cameron Adelman

My ultimate career goal is to work in sexual health with underserved populations. Access to sexual and reproductive health services is incredibly difficult in most states in the United States. It is even more difficult for people living in low-income areas, for the LGBTQIA community, for immigrants, and for people coming from non-Western cultures and perspectives. In designing a research project, these constraints to care services were something I wanted to focus on in some capacity. Genital cutting is a health concern most Western practitioners are unprepared to encounter. Considering the lack of research into psychological and sociocultural relationships to FGC, I felt even the small scale research I would be able to conduct as an undergraduate student could still have an impact by increasing the body of knowledge available.

When I first started working on my project to explore some of the social and cultural factors impacting the quality of life for FGC survivors living in the United States, I was unprepared for the challenges in data collection I would face. I knew that some of the organizations I contacted to recruit participants might decline to participate, but I did not expect so many to not respond at all. The four organizations I originally selected to contact became twelve, and only one yielded any participant data.

My original aim was to collect data from thirty survivors. I figured this was a modest goal, and between the multiple organizations I had contacted that it would not be impossible. I have collected data from eleven survivors. After four months of managing communications between a dozen organizations, I collected just over one third of my initial goal. Even for women who had reached out to support services and organizations, there was still this barrier of stigma and shame preventing the kind of data collection I had hoped for.

The difficulties in data collection lead me to exploring large international databases for information from large scale surveys I could use in addition to my own survey results. I was determined not to let the struggles in data collection stop me from completing this project that had been in the works for over a year. If anything, the barrier in data collection only provided further evidence to the extent of the need for additional research. The taboo nature surrounding FGC and its impact on survivors will never improve if the body of knowledge on the subject remains so limited.

The direction my project has taken has revealed a cycle that keeps this field of research from advancing. The stigma surrounding FGC, the blame and self doubt many women feel about their experience with it, and the difficulties in speaking out against FGC in practicing communities makes collecting data from survivors extremely difficult. The lack of data and research about FGC makes it difficult to reduce the social attitudes and survivor guilt, and support survivors in efforts to speak out. In short, you cannot add to the body of research without data, but you cannot collect sufficient data because of the taboo nature, which an increased body of research could help improve.

From the little data I have been able to collect, there is a clear negative correlation between how supportive someone’s community is of FGC and how that makes women feel – the more supportive a community is of FGC, the more negatively a woman feels about that, and vice versa. Additionally, women in communities that are supportive or very supportive of FGC have had fewer sources of personal support than women in communities that are unsupportive or very unsupportive of FGC. This speaks to the unique challenges in reaching women living in FGC supportive/practicing communities for resources and support, compared to survivors who no longer live in FGC practicing communities. I am still intending to try to address through my research the unique constraints facing survivors in communities and areas supportive of FGC, and the additional social and emotional problems these women may face. I just have to think beyond the scope of the data I have collected through my survey.

As the direction of my research project has morphed and changed over the last few months, it has only served to emphasize the need for this kind of research. The social stigma and shame cannot be addressed if research is not available to speak to the needs and support necessary for survivors. As an undergraduate student, the scope of my research is limited, but I hope even that can be a step along the path to better understanding and support for survivors of FGC.

More on Cameron:

Cameron Adelman is a senior neuroscience major and women and gender studies minor at Wheaton College in Massachusetts. He has been working on his research project about social and emotional effects of FGC since last year. The findings of his research among women who have experienced FGC suggest a number of sociocultural confounds in trying to develop and deliver support systems for women living in practicing communities. Cameron’s hope is to help advise best practices that take these factors, as well as additional risks to wellbeing, into account.

By Masuma Kothari

Country of Residence: United Kingdom

A vivid memory of my cut has lived through so many years that I can recall the entire act. This experience always intrigued me and it did lead me to the insights of child psychology as to how tender a 7-year-old is. Even though my personal experience was not very excruciating, I clearly remember the sense of betrayal, and it never went away.

I was never convinced with the benefits theory that was proclaimed, and honestly, nobody really knew at a deeper level the real reason to follow this practice when I sought guidance. Because of the social influence, it was apparent that herd mentality, unexposed details, unquestioned thoughts promoted this practice.

When my elder daughter was near the age, I had to figure out for myself if my daughter should also be cut. It felt as if I had Godlike power to alter something natural belonging to my daughter’s body forever, and that did not feel right. For me, the decision was a chaotic fight between the cultural beliefs and the scientific quest. I reached out to a few of my doctor family members to understand if there was any scientific aspect. All of them discouraged the practice. That is when the light in my heart beamed strong.

I chose courage and discussed this openly within my group of Bohra friends. Surprisingly, I found most of the women were also against it and this strengthened my defiance! In fact, my mother secretly regretted having the practice done to me, too.

I was sure I did not want to take away what God had bestowed on my daughters. With this clarity, I announced it to my family that we won’t be conducting this on our daughters. One additional powerful advantage was that we resided in the United Kingdom. Since it is a criminal offence here, it was an easy argument to assure a few of our noisy family members back in India.  Because we as parents were strong, nobody really questioned or bothered to enforce this. It was simply about standing up for what we thought to be correct.

My husband was firm from day one that he was not willing to get this done for our daughters, yet he had given me the ownership of making this decision in case I was convinced that it had to be done. My decision scale had a chunky weight on anti-FGM, which was also a major influence in my decision to not cut my daughters.

There is absolutely no need to do this. If you are a parent struggling with the obligation to have this done, just say no to this age-old trauma-enabling practice and move on guilt- free with loud pride that you have made the right choice.