Guide to Investigating Disability Issues: Chapter 3 — Sources and Data

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Introduction/TOC | Chapter 1 | Chapter 2 | Chapter 4 | Chapter 5

Illustration: Alexandra Ramirez for GIJN

As in all stories, choosing who your sources are makes a difference.

“One thing to do that’s right is to listen to people with disabilities,” says award-winning NPR investigations correspondent Joe Shapiro, who has covered disability for more than 35 years and has written a book on the disability rights movement in the US.

A lot of journalists fail to actually quote a person living with the disabilities they’re writing about.

“If you just talk to doctors, just talk to government officials, you’re going to get the wrong approaches,” Shapiro warned. “You’ll get the medical approach, you’ll get the inspirational stories. So for starters, the right thing to do is to listen to people with disabilities themselves, to make sure you have their voices.”

Finding Sources

All of this might sound obvious — but a lot of journalists fail to actually quote a person living with the disabilities they’re writing about. Eric Garcia, an autistic journalist and senior Washington correspondent for The Independent, explains that, often, if someone did not communicate verbally, journalists would use that as an excuse not to talk with them.

“Now there’s less of an excuse, because a lot of non-speaking autistic people have means of communication,” Garcia said. “Social media has flattened that type of barrier. And on top of that, a lot of autistic people now have assisted communication.”

There are also many disabled and neurodivergent people who are experts in the fields that you might need for your story.

“You have autistic people who are becoming lawyers, doctors, activists in their own way, people with MPHs [Masters of Public Health] or journalists and authors themselves,” Garcia added. “So they have lived expertise, and they have actual credentialed expertise. And I think both of them are important.”

It’s also important to examine which organizations are credible. For example, look at the different roles autistic people play inside a group or agency devoted to autism. “Not just somebody who is the front desk secretary, but actually somebody who has power to influence the organization,” Garcia explained. “If it’s a mixed group, which is to say it has parents and self-advocates (people with disabilities), how much does this group actually give power to self-advocates?”

A timely example of where prioritizing individuals with disabilities is essential: Long COVID (or Post-COVID Conditions) is increasingly seen as a post-viral disability. Not every nation or program regards it as a disability, but many patients with Long COVID now identify as disabled — and some countries, like the US, have begun to recognize the diagnosis.

investigating disability long COVID recognized as disability

The US government’s recognition of long COVID as a disability is an example of how disability issues are constantly evolving. Image: Screenshot, The Washington Post

“I think when searching for sources, first always speak with patients and patient advocates who have the lived experience with the illness,” advised Miles Griffis, a US-based independent journalist, who began writing on the issue after he became disabled with Long COVID in 2020. In his reporting on the topic, Long COVID patients repeatedly tell him that they know more about Long COVID than their doctors. “Some of their doctors have admitted that to them,” Griffis added. “So yeah, patients are experts.”

Bear in mind that, in such cases, patient sources are not scientific experts and this is still an evolving situation. So, look for those who have expertise in a similar condition, such as myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS, a little known condition that researchers and health experts suspect can be triggered by viral illness.

Finding Data

Data journalism can be invaluable in reporting on disability issues. Journalists can identify social trends, patterns in discrimination, and failures of society to care for those needing assistance. “It is important to have numbers that help you build your point and show the extent of a problem,” noted NPR’s Shapiro.

But there are some serious caveats to consider.

When looking for data, remember that for years disability was not taken seriously as a scholarly field, and that people with disabilities haven’t always had civil rights; in many countries they still don’t.

Always be critical of the data you find. First, examine the definition of disability, as it can vary depending on the country or program.

“Reporters should familiarize themselves with the consumer support organizations in their communities, which work with people with disabilities.” — Susan LoTempio

John Loeppky, a disabled, Canada-based freelance journalist, says it’s important to acknowledge how history might impact the data you’re looking at. “We have to sit with the fact that not even 60 years ago [in Canada], a lot of disabled people were being left on doorsteps,” he explained. “So historical data isn’t there. Even recent data is horrendous in a lot of circles.”

“In quadriplegics, we’re running into types of cancer that have never been treated — or found before,” he added. “For a lot of these things, there just isn’t data or there is data that we just didn’t know is fundamentally wrong.”

His advice is to consult people in the disabled community, especially when data might vary widely or be impacted by other factors, such as socioeconomic status or intersectional identities. So Loeppky advises asking for expert help when reading data.

Besides government data, look for databases put together by organizations and charities that represent or serve the populations you’re writing about.

“I’ve also found studies can also paint a good picture of prevalence, co-morbidities and how certain conditions interact with society.” advised Liam O’Dell, a Deaf, dyspraxic and autistic freelance journalist in the UK. “Google Scholar is a good tool to help with this.”

For other data and sources, look to local organizations, advised Susan LoTempio, a retired journalist and advisory board member of the US National Center on Disability and Journalism (NCDJ). For context, in the US, Canada, and Italy, independent living centers are local organizations that help people with disabilities to live in their own communities. These organizations are majority-run by people with disabilities.

Medicare, a US government-run healthcare program for people with disabilities and older adults, can be a good source of data. Image: Shutterstock

“Reporters should familiarize themselves with the consumer support organizations in their communities, which work with people with disabilities,” said LoTempio, who had polio as a child and uses a wheelchair. In the US, these include groups like the Centers for Independent Living, Epilepsy Foundation, and Disabled American Veterans. “They’re the places to find sources and locally-focused data. And while the federal government keeps wide-ranging data on the disabled population, the national headquarters of organizations like the Disabled American Veterans also are key sources of information.”

Shapiro said that sometimes, you may have to create your own database or find relevant reports to use as a foundation. For context, in the US, Medicare is a government-run healthcare program for people with disabilities and older adults and it can be a source of massive datasets. The absence of data, or the time it takes for an organization to collect it, or the inability to access it, can also be reasons to investigate.

General Data and Sourcing Tips

Using search terms like “disability” along with similar keywords in databases may yield results, but don’t overlook terms that your local governments and agencies use.
Sometimes disability can be found in statistical datasets and surveys under “health,” “demographics,” or “identity.”
If you cannot find relevant data on a specific group of people with disabilities, try looking at more specific groups to create your own picture. For example, if you’re working on a story about immunocompromised people in your country, but cannot find a general statistic on the number of immunocompromised people, instead try searching for data on specific conditions immunocompromised people might have, like cancer, autoimmune diseases, transplants, and HIV/AIDS. Or look for organizations that represent or serve immunocompromised people.
If your country has a national statistics database, division, or ministry, this is usually a good place to start. See, for example, the Reports on Disability and Accessibility database from Statistics Canada. Some countries also include people with disabilities in national surveys or censuses. Here’s a story that points to issues with the data regarding people with disabilities in India’s census.
For more information on how to cover Long COVID as a disability, read this guide from Body Politic, written by independent journalist Fiona Lowenstein.
Use freedom of information (FOI) or right to information (RTI) laws to obtain data when officials won’t freely hand it over. GIJN has a comprehensive guide to using these access laws around the world. When agencies refuse to comply with existing law, consider engaging lawyers who will sue under the act. Some attorney will take such cases for free.

International databases:

World Health Organization Data Collections is a database of global health statistics and information.
International Household Survey Network is an easily searchable database that includes surveys conducted in countries throughout the world.
The World Bank’s Microdata Database includes different surveys, particularly from developing countries.
The United Nations Statistics Division: Disability Statistics Programme provides, according to the UN, the “international guidelines and standards for disability measurement; information on regional and international meetings related to disability statistics; and links to other relevant sites and resources.”
The main UN Statistics Division website may also be helpful in finding relevant statistics not found under the Disability Statistics Programme.
International Labour Organization Survey Catalogue is yet another international database of national surveys.

This is a non-exhaustive list and some countries may not collect or contribute information for these databases.

Types of Databases to Look for in Each Country

Health Systems — Data from your national healthcare system may not provide a full picture (depending on enrollment and accessibility of health services). But it may offer valuable statistics on such areas as the number of people with disabilities, the extent of the healthcare they receive, and how your government spends money on the needs of people with disabilities. See, for example, these online libraries from the UK’s National Health Service Statistics and the US’s Centers for Medicare & Medicaid Resources’ Research, Statistics, Data & Systems and Mapping Medicare Disparities by Population.

Similarly, national health agencies or institutes may also provide statistics on prevalence of disabilities. These agencies may not refer to all disabilities as such — instead, journalists may need to look for databases of health conditions, diseases, or illnesses. Here’s an example of the statistics database offered by the Ministry of Health, Labour and Welfare of Japan, while the CDC’s Interactive Database Systems tracks disease and disability prevalence.

Some disability organizations and groups create their own maps to help people with disabilities, which can be helpful in finding stories or painting a broader picture of an issue.

National Disability Programs & Disability Pensions/Universal Incomes — Does your country have a national program that provides a basic income or government services to people with disabilities? This is another agency where you can search for data. Again, be aware that these organizations may only provide a partial picture of what is happening to disabled persons. In some countries these programs are hosted under departments such as ministries of health, social services, or welfare. Here are examples from South Korea’s Ministry of Health and Welfare and the US Social Security Administration.

Financial Expenditures — Are there any government or non-governmental organizations that track the financial spending of programs that are meant to provide support to people with disabilities? These databases or organizations can be a great place to follow the money and see where there may be shortfalls in care or assistance — or where care and resources are influenced by lobbyists or corporations. For example, for the United States you can look into the government-run Open Payments Data (CMS) or ProPublica’s Dollars for Docs, both of which show publicly available information about payments made to doctors by pharmaceutical companies.

Geographic — Maps are a powerful tool in journalism and can be a powerful tool in finding more information about disability.

Croatian nonprofit Udruga Liberato mapped accessible locations in various cities. Image: Screenshot, Udruga Liberato

In countries with census or survey data broken down by region or municipality, you can build your own maps if they do not already exist. Additionally, some disability organizations and groups create their own maps to help people with disabilities, which can be helpful in finding stories or painting a broader picture of an issue. For instance, the Croatian nonprofit Udruga Liberato created a map showing different locations in Croatian cities and how physically accessible they are.

Disability Organizations — National disability associations are often a great resource, but it is important to prioritize organizations led by people with disabilities and who have a strong membership of people with disabilities. There are also groups that focus on how people with disabilities intersect with other marginalized identities (such as organizations that serve LGBTQ disabled people), people with a specific disability (such as a national association for Deaf people), who became disabled in a specific way (such as disabled veterans organizations), or organizations for disabled people who share a common interest (national disabled sports organizations or federations). Some other examples are: the Autistic Self Advocacy Association in the US, which is run by and for autistic people, the multinational European Network on Independent Living, the regional Independent Living Resource Centre in Winnipeg, Canada, and Northamptonshire People First in the UK. Finally, the International Committee of Sports for the Deaf/Deaflympics is an international elite sporting competition for Deaf and hearing-impaired athletes, recognized by the International Olympic Committee.

International Disability Organizations — Note: There are numerous umbrella groups for disability communities, many of them not included here. The groups below are meant as a sampling.

International Disability Alliance (IDA) – A global alliance of organizations for people with disabilities. Member organizations are majority led by and include people with disabilities and their loved ones, according to the IDA website. IDA also runs the Indigenous Persons with Disabilities Global Network and Global Action on Disability (GLAD) Network.
European Disability Forum is “an umbrella organization of persons with disabilities that defends the interests of over 100 million persons with disabilities in Europe.” The group also offers resources on its website, including publications and webinars.

Image: Screenshot, African Disability Forum

African Disability Forum is “the continental membership organization of Disabled Persons’ Organizations (DPOs) in Africa.” You’ll find a list of relevant African organizations here.
ASEAN Disability Forum is a network composed by the Organisation of Persons with Disabilities (DPOs) of the Association of Southeast Asian Nations. It produces reports that can be a good resource for journalists.
RIADIS is the Latin American network of non-governmental organizations of persons with disabilities and their families. It has an interesting resources section on its website, where one can find tools and a library.
Pacific Disability Forum represents 71 organizations of persons with disabilities and their supporters in 22 Pacific Island countries and territories. It offers an online library with resources on COVID-19, gender, accessibility, climate change and more.

International Disability-Specific Organizations

The World Blind Union (WBU) is a Canadian-based organization that offers resources on COVID-19, human rights, employment, education, and more.
World Federation of the Deaf is a global organization working to ensure equal rights for 70 million Deaf people around the globe, with resources on policies, toolkits, and various reports and guidelines.
World Federation of Deafblind advocates for the rights of people who have both hearing and vision disabilities. The group offers global reports and various resources on its website.

Other International Resources

Two reports by WHO about the international issues and inequity impacting people with disabilities: the broad but now dated World Report on Disability (2011) and the more focused Global Report on Health Equity for Persons with Disabilities (2022).
World Bank Analysis on Disability Inclusion — The Work Bank has produced several studies and analysis reports on the intersection of disability with topics such as education, violence, and development. There are also examples of different disability initiatives in different countries.

The UNICEF Report on Children with Disabilities estimates that one in ten children worldwide have a disability. Image: Screenshot, UNICEF

The UNICEF Report on Children with Disabilities “Seen, Counted, Included: Using data to shed light on the well-being of children with disabilities” (2022) provides important statistics about children with disabilities and the human rights disparities they face. UNICEF says the report includes the “first-ever global and regional estimates of children with disabilities.”
United Nations: Department of Economic and Social Affairs; Disability Resources — This webpage provides links to the UN’s work and resources regarding disability, including lists of disability laws and acts by country, and disability strategies and action plans by country.
International Labour Organization’s Department of Statistics (ILOSTAT) provides data and information about international employment of people with disabilities.
United Nations Factsheet on Persons with Disabilities — A quick reference sheet of international disability statistics and issues impacting people with disabilities.
Long COVID Source List — This is a global database of Long COVID sources, including patients and experts. The database does have rules for use, and includes contact information, location, and information about each source.
Body Politic Long COVID Support Group Interview Requests — Body Politic’s international support group allows journalists to submit a media request to them, which they share within their network to find individuals who may be interested in speaking. The support group has over 13,000 members who currently have, have had in the past, or are recovering from COVID-19, who have symptoms after recovering from COVID-19, or are loved ones of someone with COVID-19, according to its website.
Disability and Poverty in Developing Countries: A Snapshot from the World Health Survey — This study aims to contribute to the empirical research on social and economic conditions of people with disabilities in developing countries. Using comparable data and methods across countries, it presents a snapshot of the economic situation of working-age persons with disabilities and their households in 15 developing countries.
The Disability Portal — The portal collates quantitative disability data from 48 countries, mainly from the Global South, using key development indicators mostly drawn from the UN’s Sustainable Development Goals framework. The data covers the themes of education, economic empowerment, stigma and discrimination, and technology and innovation.
The African Disability Rights Yearbook published every year by the University of Pretoria, is a peer-reviewed journal free to users aiming to “advance disability scholarship” on the continent.