The Invisible People: Poor International Data on People With Disabilities

According to experts, international disability statistics are almost nonexistent. Various challenges have stood in the way of efforts to collect, analyze, and standardize international data on people with disabilities. Social stigma attached to disabilities causes people living with them to underreport; defining disability is itself difficult and changes from country to country; and to discrimination against people with disabilities is ingrained in most cultures, rendering them a less powerful constituency in terms of prioritized policymaking.

The critical role of disability data

International disability data can’t change institutions on its own. However, having the data is essential to realizing systematic changes, because data help identify policy gaps and bring attention to problems. In fact, sometimes statistics provide us with the only available sense of what’s real.

Often as we read news stories about people with disabilities we hear individual stories. This is powerful; anecdotes and the real life experiences of people with disabilities are critically important to the conversation. They move even people without disabilities to action, and they ensure that people with disabilities are more visible. However, it is solid data that is used to ground policies and programs.

Even policymakers with the best intentions fail if their solutions are not data-driven. Without knowing what actual problems people with disabilities face, any solution is likely to fail—and, should it succeed, does so only thanks to sheer luck. The successful program or policy that does not rest on data is haphazard and unrepeatable.

Why is it so hard to collect and analyze disability data?

Advocates and experts agree that the logistics that underlie the segregation of disability data are more difficult than those for other frequently tracked demographics such as race or gender. That is because there is a tremendous amount of experiential variety that lives within the category of life with disabilities. Even deciding which people in a country live with disabilities is an exercise in complications, as evidenced by widely variant estimates from country to country. For example, according to the 2015 U.N. Economic and Social Commission for Asia and the Pacific, Iran reports that only 1.5 percent of its population is disabled, whereas New Zealand reports 24 percent.

Not only are there are many different ways to define disability, each country may have different reasons for wanting to count people with disabilities in the first place. This too leads to more variations in the data. For example, if a country counts disabled people solely to understand who is out of work and who needs public benefits as a result, they may have lower numbers compared to a country who simply bases disability on limitations in everyday life.

Most people today go with the World Health Organization and World Bank 2011 World Report on Disability as a baseline. That report estimates that more than 1 billion of the world’s people—about 15 percent of the total—are disabled. However, even this baseline is shaky. The data that comprise the report results are more than ten years old, and each country used its own definitions in its report to the UN.

Why haven’t there been new efforts to collect more disability data?

Many experts argue that lack of funding is at the root of this problem. Others say that there is no reason to believe that there is monumentally impactful new data out there. Just as credible an explanation is the invisibility of disabled people on the world stage.

For example, the UN adopted the Millennium Development Goals in 2000. These were quantified targets designed to address matters of extreme inequality and poverty, and to promote education, gender equality, and environmental sustainability. Each of these goals was part of a 15 year plan to be achieved by 2015.

What is noticeably missing is that there is no mention of people with disabilities in the goals. In other words, for the past 17 years, disability data and rights were not really on the UN radar.

Pushing for visibility

In 2006, Mexican UN representatives proposed to the General Assembly that a treaty to protect the rights of people with disabilities be created. This would be modeled after the treaties protecting the rights of children and women. In 2007, the Convention on the Rights of Persons with Disabilities was submitted to member states for signatures. Inclusion and access were seen not just as issues affecting principled fairness, but as tools for economic strength.

The convention is legally binding for all countries which have signed and ratified it. Notably, the United States is one of only nine countries who signed but did not ratify the convention. Only seven countries, most in political turmoil and all in the developing world, did not sign the convention.

However, although the convention is legally binding for most countries, it leaves the definitions and enforcement up to the individual nations. Article 31 obligates countries to collect data on people with disabilities and make them available to the public. This has in fact led to an uptick in collection and reporting of data on people with disabilities.

Current state of affairs

The 2015 guiding principles, the Sustainable Development Goals, were adopted and are in place until 2030. People with disabilities are more visible within this set of guidelines. The entire piece contains 17 goals, 164 targets, and hundreds of statistical indicators. Of those, seven targets and 11 indicators explicitly discuss disabilities, and disability is a suggested focal point in other places, “wherever relevant.”

In an attempt to ensure more universal standards for disabilities are developed and adopted, the Statistics Division of the UN organized the Washington Group on Disability Statistics to promote unity. The Working Group is tasked with developing such a universal set of standards and is composed of an international group of policymakers and diplomats. Open-ended questions and broader categories should be more inclusive than data collection tools of the past, and will hopefully improve response rates and reduce the stigma attached to self-identifying as disabled. If this set of universal standards can be created, it will provide a strong, data-driven foundation for policy.

As advocates and international organizations continue to agitate and achieve visibility for people with disabilities, the idea of disability takes its place outside the simple context of healthcare and within the broader context of human rights. As this happens, pride within the community of people with disabilities grows.