Better data collection bolsters human rights of marginalised people

Data can change lives.

Proper collection, sectioning and analysis of data collected by governments, NGOs and others can improve living conditions, development opportunities for those in societies who are often overlooked in data collection. To do this, UN Human Rights is calling for a data revolution.

“We are in the midst of a data revolution that could radically improve the way we use data to better understand human rights concerns and risks, assess progress, monitor human rights, hold governments, businesses and individuals accountable and foster sustainable development,” said UN Assistant Secretary-General for Human Rights, Ilze Brands Kehris.

Kehris made her comments during Count us in: Breaking the cycle of invisibility in data, a side event held during the UN Statistical Commission annual session. The event, organized by UN Human Rights, was an opportunity for representatives from groups who are “data invisible” to highlight the need for a people-centered approach to data collection and analysis.

Speakers told of the importance of implementing voluntary, consensual, and participatory approaches with strong safeguards including building trust, active participation of marginalized groups. The need for political good will was raised as a key component for a human rights-based approach to data collection.

James Karanja knows first-hand how a people-centred approach to data collection can make the invisible seen.

As a leading campaigner for intersex people living in Kenya, he celebrated the government’s decision to recognize intersex people for the first time in the 2019 census. Karanja, 27, was born with both male and female anatomy and was raised as a girl, named Mary Waithera.

“There are laws when it comes to registration of birth certificates and probably other certificate and legal documentation that you might require that identifies you,” he said. “You end up being excluded from getting the services that the general population usually gets without having to train for it. Intersex rights are human rights, and therefore they should be streamlined within the Human rights issues globally.”

Karanja said data collection is key to achieving basic human rights.

“Lack of data or lack of intersex people standing out to be counted means that, for example, when the government or the state is doing its budgeting, these are one category of people who are left out. to access,” Karanja said. “Being left out means that you, will not be able You are not able to access some of the basic services that you might want, for example, issues on health care, but intersex men might need some kind of special health care.”

Kehris pointed out many States have been reluctant to collect disaggregated data on human rights issues and marginalized groups.

“The lack of data, disaggregated by race or ethnic origin, as well as by gender, age, and other factors, hides the disproportionate impact of certain laws, policies and practices on racial or ethnic groups in all areas of life, from housing and education to employment, health and the criminal justice system. It also hinders the development of legal and policy responses that speak to the lived experiences of racial or ethnic groups and the intersectional forms of racial and other forms of discrimination that they face.”

“Under international human rights law, it is of critical importance for States to collect disaggregated data as part of their necessary 'steps' and 'measures' to give effect to their commitments,” she continued.

Data can help highlight cycles or patterns formed by human rights abuses, said Tarak Shah, a data scientist with the Human Rights Data Analysis Group. Exclusion of data by some groups has been attributed to challenges in accessing surveys such as homeless people, linguistic minorities, or fear and stigmatization of identifying as a member of a particular minority.

“Data analysis can help to reveal patterns that demonstrate that in fact, they share this experience with others and are not alone,” he said. “These patterns can also illuminate questions of responsibility when violations are systemic.”

See how James Karanja used his voice to get intersex people counted in Kenya in the video below.