Introduction
From Gambia to Mozambique, Pakistan to Haiti, many rural women and girls are forced to live with the indignity of obstetric fistula. This preventable physical condition is painfully debilitating for those who experience it. The lack of access to basic social, economic, and health care services in remote regions right across Africa and South Asia results in many women having no voice and no choice about the lives they live and how they interact with the wider community.
What is Obstetric Fistula?
Obstetric fistula occurs when there is prolonged or obstructed labor, leading to an abnormal opening between a woman or girl’s birth canal and her urinary tract or rectum. The physical injury results in urinal and/or fecal incontinence. This is undeniably a horrific experience for all affected women and girls, yet it remains a neglected human rights and public health concern. This reality is unacceptable by the most basic human standards of dignity and respect in our global community. And more recently, there is the additional challenge of an Iatrogenic fistula.
A word about Iatrogenic fistula
A genital fistula caused by a human agency such as a healthcare worker is known as an Iatrogenic fistula. For instance, during a cesarean or other gynecological operation, an accident can occur unintentionally, and the bladder is cut, causing a hole through which urine leaks. Sometimes such accidents occur during operations that are not connected to childbirth.
In several countries, there has been a noticeable increase in the number of such fistulas in recent years.
A Basic Right
For millions of people worldwide, the full enjoyment of their right to the highest attainable standard of physical and mental health continues to evade those living on the margins of society, such as women and girls with fistula. Other fundamental basic human rights are also disregarded in this context, such as the right to freedom of movement, freedom from torture, the right to information, and the right to life for both the child and its mother. Education is universally recognized as key in enabling and supporting people everywhere to access their rights and lead dignified lives.
Enabling Prevention
In promoting the prevention of obstetric fistula, it is noticeable that there is a great lack of information about the subject, its causes, and consequences. To fill this information gap, an education pack could be very helpful. In this context, access to relevant information is essential.
The right to an education is a fundamental human right, which is denied to many women and girls throughout the developing world, particularly those living with fistula(e). Accessing the right to education is key in supporting the prevention of obstetric fistula.
UN efforts to prevent obstetric fistula
More than seven decades ago, the Universal Declaration of Human Rights, signed by all UN member states, recognized that “all human beings are born free and equal in dignity and rights” (Article 1 UNDHR:1948). These ‘rights’ are acknowledged as inalienable by an individual’s birth and are afforded universal protection. This includes rural women at risk or living with obstetric fistula.
Nearly four decades later, the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) came into force due to the distinctive human rights violations and oppressions experienced by women in society compared to men. The Convention highlights and seeks to challenge the forces sustaining the imbalances that women and girls experience within social, educational, civil, health, cultural, and traditional spheres in our societies. Yet, the continued prevalence of obstetric fistula clearly demonstrates that the world still has far to go toward achieving the ultimate goal of equality and dignity for all. The convention also emphasizes the failure of government and non-governmental organizations and agencies and the wider human rights community to adequately address the additional injustices that women and girls continue to endure in the 21st Century.
Eradication and Prevention
The near eradication of obstetric fistula in developed country contexts is a testament that the injury is preventable. Preventing women from developing obstetric fistula requires a holistic approach beyond the current response that focuses on medical intervention. This type of response views obstetric fistula primarily as a reproductive rights issue and focuses on a strategy to repair the fistula once it has occurred. However, the scarcity of medical facilities, many of which are located at great distances from rural areas, alongside the lack of trained personnel to perform fistula surgery, means that women and girls spend many years suffering in silence.
A Woman’s Burden
The personal, familial, and community lives of these hidden women have been so impacted by obstetric fistula that the condition cannot be treated solely from the narrow context of a medical issue. Many women and girls at risk of obstetric fistula reside in remote rural locations, are young and poor, have limited access to education or livelihood options, and occupy subordinate positions within their homes and community. They are powerless to negotiate and access their rights. A child born to a woman or girl who develops an obstetric fistula is often stillborn. This devastates a young woman in societies where motherhood is key to her social value. This reality, coupled with the social and physical ostracization resulting from her incontinence, most often pushes the woman or girl onto the margin of her community. Given the taboo nature of the issue and the difficulty in discussing it, many women are stigmatized and left to fend alone in silence.
Obstetric Fistula, Disability, and Human Rights
There are compelling reasons to acknowledge obstetric fistula as an impairment that can result in disability. This reality is identifiable under the UN Convention on the Rights of Persons with Disabilities (UNCRPD). The Convention recognizes that disability is the disadvantage that results from the interaction between persons with impairments and attitudinal and environmental barriers, which hinders their full and effective participation in society on an equal basis with others. Obstetric fistula, seen as a disability, affects the full participation of everyone living with this condition in regular economic, social, cultural, and civil activities.
Article 6 of the convention, which applies to women with disabilities, recognizes the multiple layers of discrimination they endure. Article 25 on the right to the enjoyment of the highest attainable standard of health, without discrimination based on disability, also includes the right to services designed to minimize and prevent further impairments. Both articles apply to women and girls living with obstetric fistula.
The physical impairments, including bladder and bowel incontinence, mobility impairments, susceptibility to infections, and psychosocial impact, that women and girls with obstetric fistula experience hinder their full participation within their society. These are exacerbated by interaction with additional barriers that often result in banishment from community life, poverty, malnutrition, unemployment, denial of access to public services, and vulnerability to violence and abuse. All of these are documented consequences of obstetric fistula in the 21st Century. In the social sphere, these include, for example, rejection, stigma, and discrimination, divorce, no access to children, infertility, lack of medical and psychosocial services, lack of information, community attitudes, and much more.
First Steps towards Prevention
Because of their disability, women with obstetric fistula(e) are excluded from everyday life in their communities, from the benefits of development and the fulfillment of even the most basic of their rights, such as shelter and human relationships.
These denials of human rights are systemic. Raising awareness among individuals and families is essential. Still, to prevent obstetric fistula, States must acknowledge and challenge the embedded harmful social attitudes and priorities that negatively impact women and girls. While offering surgical fistula repair or psychosocial healing damage for individually affected women is indisputably vital, States must develop and implement holistic health policies and practices that reduce the incidence of obstetric fistula to zero.
To be effective and to support women and girls who experience obstetric fistula or those who may be at risk of it, we must recognize the issue as a denial of the most fundamental human rights and dignity of the human being. At the core of the issue is the recognition and acceptance that all lives matter and that in the essence of the Sustainable Development Goals, assuring the fulfillment of the human rights of younger, poorer, less educated, rural women with impairments will ensure that ‘no-one is left behind.’
A human rights approach to obstetric fistula
“The persistence of fistula results from human rights denied and a reflection of human rights abuse. It reflects chronic health inequities and healthcare system constraints, as well as wider challenges, such as gender and socioeconomic inequality, child marriage, and early childbearing, all of which can undermine the lives of women and girls and interfere with their enjoyment of their basic human rights” (Babatunde Osotimehin, Executive Director, UNFPA).
According to the Campaign to End Fistula, coordinated by UNFPA, “a woman with obstetric fistula spends each day surviving, not ‘living.” In such circumstances, human rights are impossible dreams.
As previously stated, until recently, obstetric fistula received attention mainly as a surgical issue. Many UN reports and resolutions place it in the realm of human rights yet continue to stress repair as the most urgent requirement. However, the broader human rights violations which impede women’s well-being and opportunities inform the conditions in which obstetric fistula continues to occur. Essentially, the failure of States to prioritize the prevention and eradication of obstetric fistula is caused by and adds up to a violation of women’s human rights. Recognizing a condition as a human rights violation emphasizes its gravity rather than viewing it as a private tragedy. Programs of change depend on their existence on naming issues in international treaties and fora. Therefore, leadership on prevention and eradication needs to come from the human rights structures of the UN.
Responsibility of States
To prevent obstetric fistula, it is essential to address the legal and institutional contexts in which violations of sexual and reproductive health arise for women, as well as the gender inequalities and other social barriers which prevent women and girls from accessing nutrition, information, education, and health services.
States have obligations to their citizens under the International human rights treaties that they have signed and, in many cases, ratified. For women at risk of developing obstetric fistula, the most relevant and useful Treaty Bodies to engage with are the CEDAW (Convention on the Elimination of all forms of Discrimination against Women), ICCPR (International Convention on Civil and Political Rights) and CRPD (Convention on the Rights of Persons with Disabilities) committees. These are the gatherings where States are asked questions about the extent to which they implement the provisions of these conventions.
From a human rights perspective, while equitable and timely access to treatment is essential, the aspects of prevention, tackling discrimination and stigma, and the reintegration of those who endure obstetric fistula – generally younger, poorer, and marginalized women – is equally vital, urgent, and important. As duty-bearers, States need to recognize their obligations to this ostracized and disempowered population and to take responsibility for eliminating the condition with alacrity and to prevent this condition from occurring in the first place.
Prevent mistreatment
Despite recent progress in developing human rights standards in the context of maternal mortality and morbidity generally (see United Nations General Assembly (UNGA) – A/HRC/21/22), international human rights standards on mistreatment during childbirth in medical facilities are still in an early stage of development. The mistreatment to which women are known to be subject during childbirth, however, is a potent disincentive for women to attend health facilities in low- and middle-income countries, which have high rates of obstetric fistula. Furthermore, mistreatment in healthcare facilities, especially neglect and delay or denial of services on the basis (among other things) of inability to pay or membership of marginalized groups, can itself result in obstetric fistula. Some recorded instances indicate the mistreatment of low-income pregnant women in some public health settings. For many poorer, younger, less educated women with or at risk of obstetric fistula, these are abuses of power. Where they occur, there are clear breaches of human rights, as well as ethical standards.
What’s required?
The prevention of obstetric fistula requires improved health systems, well-trained and well-equipped health professionals in rural areas. Prevention means there must be ready access to and a reliable supply of essential medicines and equipment, along with equitable access to high-quality public ante-natal health services that are affordable to the poorest families. Without these services, any woman or girl who experiences problems during childbirth and does not receive appropriate and timely medical care will continue to be at risk of developing obstetric fistula, and this situation will continue in and of itself to be a clear violation of her human rights. Many women are not aware of those services which are available, cannot afford them, or cannot access them due to other barriers, such as transport costs.
Actors, not passive victims
While obstetric fistula has a devastating impact on the lives of girls and women, it is still largely neglected by the international community. It has remained a ‘hidden’ condition because it affects some of the most marginalized members of the population—who are poor, young, and often illiterate girls and women in remote regions of the world. Often put aside by families and local communities, they deserve to be seen by all, including the international community of nations, as resilient survivors who can initiate change. It is necessary to stop treating women with obstetric fistula as passive victims rather than to recognize them as key actors in their own development and future.
Women with past or present experiences of obstetric fistula should be actively and meaningfully involved in the design, delivery, and evaluation of measures and actions taken to eradicate the condition and transform for the better the lives of those who endure it. For example, in recent years, One by One, a Kenyan NGO, reached over 125,000 people in 15 months using a network of fistula survivors and community volunteers to highlight and raise awareness of obstetric fistula. Crucially, this involved reintegration support as well as community education and identifying women for surgery.
Women with obstetric fistula are rights-holders, not just recipients of protection, rehabilitation, or well-being. Paternalistic measures and charity responses are inadequate to tackle decisively the causes and outcomes of obstetric fistula. It is States, not charities, which should take responsibility and be held to account for support and remedial services for women with obstetric fistula. Human rights standards and principles must be used to monitor and evaluate States’ and UN actions and outcomes in relation to obstetric fistula.
In line with the views expressed by the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health (in 2016, A/HRC/32/32), we believe that the Post-2015 Development Agenda should have a transformative impact on the lives of women and girls. It is essential to respect, protect and guarantee rights, starting from the current position, in which women at risk of, or with experience of fistula, are alienated from the systems of power or influence that keep them in their vulnerable state. Enhanced accountability and determination, based on human rights principles and recognition of equal value and dignity of women and men, are the prerequisites of the action necessary for ensuring that the present generation of women with obstetric fistula is the last to endure its indignities.
“The persistence of fistula is a result of human rights denied and a reflection of human rights abuse” (Babatunde Osotimehin, Executive Director, UNFPA, 2016).