These are some of the key findings from a new report and database called “The Disability Data Initiative,” released in June at the United Nations’ 14th Conference of the States Parties to the Convention on the Rights of Persons with Disabilities.

The project was spearheaded by Sophie Mitra, Ph.D., professor of economics, co-director of the disability studies minor, and founding director of the Research Consortium on Disability, together with a team of seven undergraduate and graduate students. The initiative was supported by Fordham University, Wellspring Philanthropic Fund, and the World Bank’s Trust Fund for Statistical Capacity Building.

The Disability Data Initiative is one of the first of its kind to review and analyze comparable data on disability and inequalities across countries, Mitra said.

The idea for the project stemmed from the fact that more than 180 countries ratified the United Nations Convention on the Rights of Persons with Disabilities since 2006, but there has been scattered and incomplete data around those with disabilities, which “prevents the development of appropriate and effective disability-inclusive policy,” according to the report.

Lack of Disability Data

Mitra and her team of students reviewed census and survey data from 2009 to 2018 for 180 countries across the world. They found that disability-related questions were missing from 24% of countries.

“It was quite shocking to see that one in four countries do not have disability questions of any kind in their censuses or national surveys,” Mitra said. “In many countries, people with disabilities continue to be invisible. We have no way of figuring out how they are doing from national statistics.”

If people with disabilities aren’t accounted for, their needs are easier to ignore, Mitra said.

“If they’re not captured, they definitely get less attention … and it’s going to be very hard for them to argue that their situation needs improvement,” Mitra said. “Policymakers can say, ‘well, they’re such a small minority, we have other groups to worry about.’”

Their analysis found that people with disabilities are a sizable group as people in “more than one in four households have a functional difficulty,” such as difficulty seeing or walking, Mitra said.

The main question related to disabilities that the team found on many censuses and surveys was “Do you have a disability?” which doesn’t allow for clear and comparable data, according to Sophia Pirozzi, FCRH ’21, who was an undergraduate student on the initiative and was responsible for collecting data from more than 1,000 surveys in 180 countries.

“Disability itself is a concept that only recently has been embraced as a socio-political [notion], as opposed to a medical deficit,” Pirozzi said. “So if we’re looking at international comparisons, a lot of the time the way the disability is defined varies greatly.”

Mitra said there is often stigma attached to the question, so people don’t always answer honestly.

“They may only think of very severe situations to qualify under the word disability,” she said. “If disability in general is stigmatized in society, they think that, ‘well, perhaps I do have a disability, but I don’t feel comfortable answering yes.’ It doesn’t produce useful data—it produces very small prevalence rates, and only captures the most extreme disabilities.”

Disparities for People with Disabilities

The team closely analyzed data from 41 countries who had comparable questions, usually based on questions from the Washington Group Short Set (WGSS) that have become the “gold standard” of surveying people about their level of disability. The questions cover topics such as mobility, seeing, hearing, communication, and cognition, and allow people to respond with a range of answers. Mitra and her team said that they would like the WGSS to be adopted and used by more countries.

“A lot of these were where we were able to compare persons who said, ‘I have no difficulty,’ or ‘I have a lot of difficulty,’ or a little bit. And that’s really useful information for us,” said Pirozzi, an English major and disabilities studies and sociology minor, who is currently interning at the United Nations in the department of economic and social affairs.

Mitra noted that this was “one of the first international efforts to document functional difficulty prevalence and education, work, health, standard of living and multidimensional poverty indicators for adults with and without functional difficulties.”

The analysis found that there was “a disability gap” in terms of quality of life between people with disabilities and those without This was true across countries in areas including educational attainment, literacy, food insecurity, and health expenditures.

For example, in Indonesia, 93% of respondents with no difficulties said that they had attended school, compared to 74% of those with some difficulty, and just 57% of those with a lot of difficulty. In South Africa, 45% of people with no difficulties reported being employed, compared to 40% of those with some difficulty, and 18% of those with a lot of difficulty.

Mitra said that this gradient of disparities from those with no difficulty to those with a lot of difficulty was one of their biggest findings.

“The degree of functional difficulties is associated with the degree of disadvantage, at least in education, in employment, and in some of these standard of living indicators, so that’s an important finding,” Mitra said. “That hasn’t been shown before.”

She said that this gradient shows the importance of not asking a “yes or no” question when it comes to disabilities.

“It implies that it’s important to measure inequalities for people on the spectrum [of disability],” she said.

Jaclyn Yap, a doctoral student in economics, who served as the data analyst for the initiative, said that understanding the varying needs of people with different levels of disabilities could help inform policy and resource decisions. The focus has always been on people with “a lot” of disability, she said, and while they study found that those people are struggling more, people with moderate disabilities still need services.

“They shouldn’t be taken for granted,” she said.

Putting the Work into Action

Mitra and her students said that they hope their work can be used by policymakers, researchers, and advocates to provide more resources and support for people with disabilities.

“We wanted it to be useful outside academia. And although we wanted it to be rigorous and scientific, we also took into consideration the general readers, which we’re hoping will advocate for persons with disability,” Yap said. “And also policymakers—they could use this as a means to help push for either laws or more budget for persons with disabilities.”

Funding for the project runs at least for another year, so Mitra said that they will include a new comparative analysis next year with different countries, including the United States.

“I’m hoping this will grow, because I’m hoping the data sets will become better and better, especially with the round of 2020 censuses,” Mitra said. “It’s starting with myself and seven students, and I hope it will grow into an international partnership among multiple universities.”

The Disability Data Initiative can be found at disabilitydata.ace.fordham.edu.