It's hard to think of many decisions more personal and life-altering than whether and when to have children. Of course, it isn't always a "decision." Even now, with modern family planning methods, becoming a parent is often unplanned, and sometimes unwanted. But for some women it is not being able to become a parent that is unplanned and unwanted. That's why it is so important for the Gates Foundation-sponsored family planning summit in London on July 11 to send a clear message on preventing forced or coerced sterilization.
Imagine if your right to have a family was taken away from you, without your knowledge or consent, or with "consent" obtained through deceit or coercion.
Imagine you were sterilized because it was easier than teaching you about effective but less permanent methods of contraception - including intrauterine devices or hormonal implants. Or to avoid the inconvenience of your menstruation. Shouldn't we also be talking about these issues when we discuss family planning?
In many parts of the world, women rely on sterilization voluntarily as one of a range of methods for family planning. However, for other women, including women and girls with disabilities, sterilization is not a choice.
Forced or coerced sterilization is often justified by claiming that it is in the "best interests" of women and girls with disabilities. But how are those interests defined, and who is defining them? Why isn't there greater attention in protecting women and girls with disabilities against sexual abuse and exploitation? Why are there so few services to support and empower women with disabilities in decisions about becoming parents?
Subarna, who lives in Nepal, has a 30-year-old daughter with intellectual disability and autism. When her daughter reached adolescence, Subarna worried that her daughter wasn't being protected from sexual abuse at school. She contemplated sterilizing her daughter to prevent pregnancy but decided against it -- concerned about the trauma of the medical procedure for her daughter. Also, sterilization can place women and girls with disabilities at even greater risk of sexual violence once it is known in the community that they cannot get pregnant.
The right to bodily integrity and the right of a woman to make her own reproductive choices are enshrined in many international human rights treaties. In particular, the Convention on the Rights of Persons with Disabilities reinforces the right to found and maintain a family and to retain fertility on an equal basis with others.
The stakeholders in the summit need to discuss forced and coerced sterilization of women and girls with disabilities and take a stand that while sterilization may have a place in family planning, it should only be performed with the free and informed consent of the woman herself, including women with disabilities.
Money pledged at the meeting should support sexual education and parenting programs that are available and accessible to women and girls with disabilities. This means setting up programs in buildings with ramps, and providing information about reproductive and family rights in appropriate and accessible formats, such as Braille or easy-to-understand text designed for women and girls with intellectual disabilities. Women and girls need to be clearly informed when discussing sterilization that it is irreversible, but that reversible alternatives exist. They need to have access to alternative contraception methods.
Governments and donors should also focus on ensuring that women and girls with disabilities have access to training in self-defense and assertiveness, developing personal assistance and support services in the community, and monitoring closed settings in which women and girls with disabilities are often placed -- orphanages, psychiatric hospitals, and institutions.
Just as important, women and girls with disabilities should be invited to participate in evaluating and developing legislation, programs and policies to ensure that their rights, including the right to have a family, are respected and fulfilled.
Women and girls with disabilities are not the only ones who are coerced or forcibly sterilized. Recent accounts from Namibia, Kenya, Chile and Uzbekistan have revealed that women with HIV have been sterilized without their consent. In 2011, the European Court of Human Rights found that a 20-year Roma woman in Slovakia was sterilized in a public hospital without her informed consent. In the US, between 1933 and 1977, more than 7,000 poor and minority women were sterilized in North Carolina. Women and girls with disabilities are part of a wider group of the vulnerable, the marginalized and the unpopular, who suffer when those with power - and with surgical instruments - feel that a decision can be made "in the best interests" of others.
The family planning summit will of course include the concerns of those seeking to avoid pregnancy but it should also address those who have the right to seek to become pregnant taken away from them without their consent.
Shantha Rau Barriga is the senior advocate and researcher on disability rights at Human Rights Watch.