Reporting Guide to Investigating Disability Issues — Short Version

Editor’s Note: GIJN’s full Reporting Guide to Investigating Disability Issues was written by Emyle Watkins and published in March 2023. This shorter, abridged version was edited by Nikolia Apostolou in January 2024.

People with disabilities are the largest intersectional minority group, according to the United Nations. They add up to roughly 1.3 billion people worldwide, and anyone can join the disability community at any time, regardless of nationality or socioeconomic status. Finally, not every disability is visible.

Virtually every reporting beat has a disability angle.

Section 1 — Definition

The World Health Organization (WHO) provides perhaps the broadest definition: “Disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome, and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.”

The US Centers for Disease Control (CDC) notes that disability can be defined as having three dimensions:

1. Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision, or memory loss.
2. Activity limitations, such as difficulty seeing, hearing, walking, or problem-solving.
3. Participation restrictions in daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.

The United Nations also offers a list of disability-related legislation by country.

Countries that have signed on to the UN Convention on the Rights of Persons with Disabilities (CRPD) recognize “that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”

Per the CDC, there are many types of disabilities, including those that affect:

• Vision
• Movement
• Thinking
• Remembering
• Learning
• Communicating
• Hearing
• Mental health
• Social relationships

These birth-related conditions may include:

In addition, the CDC notes that disabilities can be associated with developmental conditions that arise as children grow older (for example, autism spectrum disorder and attention-deficit/hyperactivity disorder or ADHD). Other disabilities can be related to an accident or injury (for example, traumatic brain injury or spinal cord injury), a longstanding condition or illness (for example, diabetes), or they can be progressive (for example, muscular dystrophy), related to aging (like the loss of mobility or vision and hearing loss), static (for example, limb loss), or dynamic in nature (some forms of multiple sclerosis). Autism, ADHD, and dyslexia are also examples of neurodivergence, where differences in the brain affect how people think and process information. Neurodivergent conditions are not, by definition, a disability, but they can be associated with disability.

For other definitions and models of disability, read the long version of this guide.

Section 2 — What to Investigate

• Deinstitutionalization: The process of moving people with disabilities out of institutions, hospitals, and facilities and into smaller community housing or independent living situations like individual apartments.
• Accessible, Affordable Housing: Examine whether people find affordable housing that meets their needs, such as having specific physical or design features that accommodate disabilities, and so on.
• Transportation Access: Investigate whether the main mode of transportation in a specific region is accessible to people with disabilities.
• Employment Access: Look for the barriers that exist to a disabled person who’s able to work.
• Education Access: Search whether any educational opportunities are provided to students and whether they’re adequate.
• Invisible Disabilities: Not all disabilities are visible to the naked eye. Many people with chronic illnesses, such as asthma, diabetes, cancer, and autoimmune diseases (rheumatoid arthritis, lupus, etc.) self-identify as disabled. Mental health conditions are often also considered invisible disabilities.
• Ableism and Discrimination: Ableism is discrimination against people with disabilities, the same as racism is used to describe discrimination against people of color and sexism is used to describe discrimination based on gender.
• Physical Infrastructure: Check whether the physical infrastructure of your community serves — or fails — people with disabilities.
• Healthcare: Investigate whether people in your region can access or afford their own healthcare.
• Supply Chains: How do supply chains and industrial issues impact access to essential medical equipment and treatments for individuals with disabilities?
• Controversial Treatments: Some medical treatments may be seen as controversial by the communities they purport to serve, especially if people are forced to undergo them.
• Abuse and Neglect: Critically examine the conditions of the institutions people are living in as well as the aides and workers who are being paid to assist them. Another major issue is filicide — when a child is murdered by a parent — and similar cases that involve killing by a partner or a caregiver.
• “Crip Tax”: This colloquial term expresses the notion that living costs more for people with disabilities.
• Forced Sterilization: Dozens of countries worldwide, including many European countries and US states, still legally permit forced sterilizations of disabled people.

Section 3 – Finding Sources & Finding Data

• People with disabilities, including non-speaking people who have means of communication.
• Advocates.
• Social media.
• Look for disabled and neurodivergent people who are experts in the fields that you might need for your story.
• Organizations caring and advocating for disabled people, but check whether they employ people with disabilities in decision-making positions.

Finding Data

• 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.
• Historical data may be missing as many countries didn’t keep data on disabled people.
• Consult people in the disabled community about the data.
• Look for databases put together by organizations and charities that represent or serve the populations you’re writing about.
• Look for scientific studies.
• You may also have to create your own database or find relevant reports to use as a foundation.
• 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.
• Start from the country’s national statistics database, division, or ministry, this is usually a good place to start. 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 attorneys will take such cases for free.
• Examine the country’s financial expenditures and how much is spent for disabled people.

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.

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 World 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 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.

Other Useful Resources

• Diversity in Latin American Journalism ebook by the Knight Center.
• Latin American Disability and Communication Observatory (Obladic)
• Integrados is the first Chilean digital media site focused on disability and inclusion
• Journalists With Disabilities Break Paradigms In Latin American Newsrooms, But Face Barriers Entering And Staying In The Profession is a great 2021 story from the LATAM Journalism Review on journalists with disabilities (available in English, Spanish, and Portuguese).
• Blind News Audiences Are Being Left Behind In Ihe Data Visualization Revolution: Here’s How We Fix That, a 2023 story from the Reuters Institute.

Section 4 — Language and Interviewing

The National Center on Disability and Journalism (NCDJ) has an extensive disability style guide for journalists that can help illuminate what language and tone to use and what to avoid. It’s available in English, Spanish, Romanian, and Italian.

Make sure you are extra careful with: 

• Accuracy. Ask the people in the disability community you’re interviewing what their preferred language is. Do they prefer the use of “person-first” or “identity-first” language? It’s the difference between saying “person with a disability” versus “disabled person.”
• When to share someone’s disability: only when it’s relevant to the story being told.
• Don’t use euphemisms. Some examples of this are “special needs,” “differently-abled,” “diversely-abled,” and “disAbility” in English. These euphemisms can vary depending on language, culture, and religion. In India, people with disabilities are sometimes referred to as ‘divyang’ which means “the one with a divine body part” in Hindi.
• Be cautious with using words that typically frame disability as a negative experience, such as “suffers from,” “defect,” “limitation,” “impairment,” or frames a mobility aid as limiting, such as using “wheelchair-bound.”

Interviewing Best Practices

Provide interviewing options to disabled people. Some people prefer virtual communication or phone communication, either due to barriers accessing their community, mental health reasons, or precautions to keep from catching an infectious disease. Some people do better with preparation rather than being put on the spot, especially for individuals with anxiety, fatigue, executive dysfunction, or sensory processing. Some people need to be face-to-face, either in person or virtually, to read your lips or use an interpreter. This isn’t an exhaustive list.

Section 5 — Case Studies

Disability Card in Burkina Faso: Disillusion (Burkina Faso) 2021. A deep dive into this West African country’s disability card program exposes issues with not only getting the card, but the card itself. People with disabilities attest to the barriers to getting the card, including the cost of expensive evaluations to meet the requirements. Card holders also say that getting the card did not end up benefiting them.

How Delhi Police Botched the Investigation into a Disabled Child’s Rape (India) 2022. Investigative site Newslaundry did a two-part series examining the rape of an 11-year-old with severe cognitive disabilities. The site documented numerous lapses by law enforcement, including instances where police did not follow procedure for dealing with a disabled victim and skipped steps necessary to allow her to provide evidence.

One Man’s COVID-19 Death Raises the Worst Fears of Many People With Disabilities (US) 2020. NPR’s Joe Shaprio looked at the case of a 46-year-old quadriplegic man who was moved to end-of-life care while being treated for COVID-19, and eventually died. His wife believes he may have been denied treatment that could have saved his life because of his disability, and several groups are concerned his rights may have been violated. This story describes how during COVID-19 many concerns arose around rationing of healthcare and medical bias towards disabled people.

Disabilities and Disabled (Ecuador) 2020. In Ecuador, 3,000 disability cards, which allow benefits including tax breaks on vehicle imports and early retirement due to disability, were illegally delivered. Journalist Fernando Villavicencio Valencia looked into a doctor and members of his family, who obtained cards and used the benefits to import vehicles.

Disabled for Sale (France) 2022. A six-year investigation into social entities that employ people with disabilities. Journalist Thibault Petit examined the low wages and deplorable working conditions of some 120,000 people with disabilities. He found they get paid half of the minimum wage and receive smaller retirement contributions.

For more case studies, visit the long version of this guide. 

Emyle Watkins is a New York-based, award-winning investigative journalist. Since 2021, Emyle has led coverage of the disability community for WBFO, Buffalo’s NPR station. Emyle’s passion for covering disability comes from personal experience as a disabled and neurodivergent person. Emyle’s reporting has been published by NPR and The Pittsburgh Post-Gazette, and has appeared in breaking news reports for BBC World News.