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Finally, Equality for Children Born with DSD

May 8, 2024

By Ramani Jayasundere and Dinusha Wickremesekera

Differences in Sex Development (DSD) is a group of rare conditions caused by genetic or hormonal anomalies that can make it difficult to identify a baby’s biological sex. Individuals with DSD, sometimes referred to as intersex, typically have ambiguous genitalia and internal reproductive organs, and sometimes require life-saving surgical interventions. Assigning a sex at birth to a baby with DSD is often difficult, because the baby’s genitalia, genes, hormones, and reproductive organs don’t match the canonical male or female body.

The uncertainties of DSD can lead to birth certificate problems when a child is mistakenly assigned the wrong sex. The Asia Foundation chanced upon this issue when Dr. Sumudu Seneviratne, one of Sri Lanka’s few pediatric endocrinologists, sought our help for families trying to amend their child’s birth certificate. At the time, roughly 200 children were receiving medical care for DSD at her hospital, and several had birth certificates that did not reflect their correct name and sex. When the birth certificates were changed, however, the changes were visible in the document, violating their privacy and threatening future stigma and social isolation at school and in the community.

Dr. Seneviratne had in her care a young family with a child identified as female at birth whose sex was changed to male at nine months after life-saving surgery. She had been able to address the family’s medical and psychological needs, but they needed a solution for the birth certificate, an essential document for children entering school, because they did not want to face awkward questions about the change in their child’s assigned sex. Already, their neighbors were asking the child’s three-year-old sister, “How did your nangi (little sister) become a malli (little brother)?”

The family that inspired the call for equality. This young mother and father hold their son and his newly issued birth certificate with his corrected name and sex. The change in his sex assignment is indicated only on the second page. (Photo: Dinusha Wickremesekera / The Asia Foundation)

A few weeks after Dr Seneviratne contacted the Foundation, planning began for the Equality for Children Born with DSD project. The Foundation’s initial research, involving discussions with the Gender and Justice team and a number of outside experts, examined current practices for a different group, transgender Sri Lankans, who had won the right to change their name and sex on their original birth certificates. As prescribed by the Registration of Persons Act of 1968, the amended birth certificates clearly showed the changes, inviting stigma and discrimination.

At the heart of the issue is our binary understanding of sex: one is born either male or female. In hospitals, girls get pink medical charts and boys get blue. When a child is born, the question never left unasked is, is it a boy or a girl? Within a month of birth, and in many cases before leaving the hospital, Sri Lankan parents are encouraged to register the birth, and the sex of the child must be listed as male or female. When it’s time to enroll in school, the child’s birth certificate must be presented.

Sometimes, intersex children find acceptance in school, but other times they have experiences such as this family reported:

The teacher looked at my daughter’s birth certificate, saw both male and female on it, and asked why this was the case—in front of the whole class! Now the girls in her class won’t talk to her or sit with her. She is alone in school. We have done everything to make sure she has all the medical treatment that she needs. I hope we can get a clear birth certificate, because she needs it for her Ordinary Level exam.

But changing the sex on a birth certificate is very difficult. In our research, we met parents of children with DSD who had gone from pillar to post seeking official help. Some had sought legal aid or gone to court, only to be told that nothing could be done or sent back to the Department of Registration of Persons, which did not understand their children’s plight. One father spoke of moving to another village to avoid questions. A couple we met had unlawfully altered their child’s birth certificate themselves. Another father said he had kept his 14-year-old son’s birth certificate hidden from him. One sensitive school principal had admitted the son to a school for boys despite a birth certificate marked “girl,” but now he had to apply for a national identity card, and the discrepancy in his birth certificate would be revealed to him.

The Registrar General’s Department, Battaramulla, Sri Lanka. (Photo : Dinusha Wickremesekera / The Asia Foundation)

Stories like these show the anguish of these families, most of them poor and with no resources other than the hospital. Determined to find a solution, the Foundation went straight to the Registrar General of Persons. We presented the issue as an absolute right to identity, to education, and to be free of social stigma. Our journey took almost three years and more than thirty meetings with the Registrar General’s Office and three registrars general, navigating the Covid lockdown and an economic crisis that brought government offices to a standstill, and even reaching out to pro bono lawyers to prepare a possible public interest suit.

This led us at last to a civil registrar in the Registrar General’s Office who went beyond her duties to find a solution. With her, we accompanied parents to their local Registrar General’s Office to ensure that they received sensitive treatment, helping to fill forms, get translations, and certify documents. When one Registrar General’s Office ran out of printer paper during the economic crisis, we donated a supply.

The project made soft interventions, too. Poor families of children with DSD received schoolbooks for all their children, as well as meals and transport allowances when parents had to travel to the capital to pursue their cases.

In December 2022, the first clear birth certificate was issued. Six more have followed, in both the Sinhala and Tamil languages, for children of all ethnicities from around the country and for one adult.

The first page of two birth certificates for the same child. The yellow-highlighted area shows the sex. The image on the right is the old birth certificate, in which the front page shows that the child’s sex has been changed from female to male. The image on the left is the new birth certificate, in which the front page shows only that the child is male. The fact that the birth certificate has been amended is mentioned only on a later page of the new birth certificate.
(Photo: H. M. Nilantha Ekanayake)

Project funding has now ended, but the Foundation continues its work to raise awareness among doctors, lawyers, academics, and civil society organizations that will result in many more families applying for clear birth certificates. And the news of our project is traveling. “I heard we can get a new birth certificate for my child,” said a mother who called the hotline in one of our fliers. “What do I need to do?”

The Foundation is helping to develop a government circular to explain the process. We also plan to enlist support from the Human Rights Commission and the Legal Aid Commission, longstanding partners of our Sri Lanka office, and the Clinical Research Center for Complex Hormonal Disorders at the Faculty of Medicine, University of Colombo, which we helped to establish during the project. The government’s newly launched digital registration system will also make issuing birth certificates at the local level much easier. But for us, the project’s real success can be found in the voice on the phone filled with urgency and hope, and in the faces of parents when they see that clear birth certificate for the first time and know that they have protected their child.

Ramani Jayasundere is director of the Gender and Justice Program, and Dinusha Wickremesekera is a project consultant, for the Asia Foundation in Sri Lanka. They can be reached at [email protected] and [email protected], respectively. The views and opinions expressed here are those of the authors, not those of The Asia Foundation.

Related locations: Sri Lanka
Related programs: Good Governance

1 Comment

  1. It’s really heartbreaking. Keep on your blessed work and interventions.


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