Illustration: Alexandra Ramirez for GIJN
Chapter Guide Resource
Chapter Guide Resource
Chapter Guide Resource
Chapter Guide Resource
Chapter Guide Resource
Chapter Guide Resource
There are numerous areas to explore when it comes to investigating issues related to disability, from deinstitutionalization and independent living to community health and caregiving.
Deinstitutionalization: This process involves moving people with disabilities out of institutions, hospitals, and facilities and into smaller community housing or independent living situations like individual apartments. If your country has begun deinstitutionalization, or is in the process, there is plenty to investigate. Are people’s basic needs adequately met in their communities, especially in rural or impoverished area? People have different levels of support needs — are those with higher support needs moved to situations that allow for the most independence possible, or do they end up back in nursing homes or hospitals due to lack of support or care? Who provides care to people with disabilities that need aides or the support of another person? Are these aides paid adequately, and are there staffing shortages or problems? Is there accountability for caregivers? For countries that have not started this process, what are the current living conditions in the existing institutions?
Some notable examples of investigating institutions include the landmark 1972 exposé on the Willowbrook State School in the US, which triggered public outrage about disability abuse and neglect, and this recent BBC story on an epidemic of institutionalized children with disabilities in Ukraine.
Accessible, Affordable Housing: Examine whether people with disabilities in your area can find affordable housing that meets their needs, such as having specific physical or design features that accommodate disabilities. Investigate if individuals living independently receive government assistance, whether those subsidies are sufficient, and the quality of the available housing. If discussions about deinstitutionalization are currently happening in your country, examine where formerly institutionalized people will live if moved out of institutions.
Transportation Access: How do people primarily move around your community, and is that mode of transportation accessible to people with disabilities? For example, if personal vehicles are the primary mode of travel, are they affordable to people with disabilities? Does the government give subsidies for personal vehicles like wheelchair-accessible vans or to adapt personal vehicles for disabled users? Is public transportation accessible, and are disabled people treated fairly and safely? Does your government have a separate transit system for people with disabilities, and is it efficient or fully meeting their needs? Are streets and sidewalks safe and accessible? Can a person with a disability safely travel the necessary distance to fulfil their daily needs?
Employment: Many people with disabilities can work, but not every community or country has the support in place to make working accessible and pay equitable. Look into what barriers exist to someone being able to work, such as if there is a need for more training programs. Examine whether there’s adequate legislation protecting against discrimination or allowing for accommodation, and what opportunities are available for people with disabilities. If there’s legislation protecting them, research whether companies abide by the laws, or whether the laws are often violated with little repercussion. Are those training programs available accessible and affordable, and are there some programs specifically for disabled workers? For programs aimed at disabled workers, what fields are they able to train for, and do they have access to the careers they want?
Additionally, some countries may allow companies to pay disabled workers less than non-disabled workers. For example, in the US, the Fair Labor Standards Act (FLSA) of 1938 permits companies to obtain waivers to pay disabled workers a “subminimum” wage. The US Department of Labor publicly provides data on organizations that have obtained these waivers. Examine whether your country has a similar law that either permits paying disabled workers less, or does not offer protection against compensation discrimination.
Lastly, job accommodations allow people with disabilities to access work spaces in an equitable and individualized fashion. Accommodations should be created by workers and their employers to allow them to do the same jobs as other people, but in different ways, when possible. For example, the COVID-19 pandemic highlighted that working from home is possible for some jobs not previously considered as remote. This is an accommodation many disabled people fought for long before the pandemic, and continue to fight for as many cultures and communities promote a return to the office. Investigate whether disabled workers have a legal right to job accommodations in your country, and whether they are discouraged or discriminated against for taking them at certain companies. Finally, consider whether a lack of access to accommodations prevents some people from working.
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 such as depression, bipolar disorder, post-traumatic stress disorder, and obsessive compulsive disorder, to name a few, are often also considered invisible disabilities. Not everyone uses the term “invisible,” as their disability may be visible to them or their family but not to a casual observer.
It’s also worth looking into how perceptions of disability impact peoples’ access to services. If your country has a disabled parking permit, can people with non-visible disabilities access it — for example, a person with asthma who has trouble walking long distances. Examine how people with non-visible or invisible disabilities are treated by employers, doctors, and others, and whether they can access government-provided supplemental income, mobility aids, or home care.
Education: In some countries, educational opportunities may not be provided to students due to dismissive or outdated attitudes towards disability, and in other places the education program provided may not meet their needs adequately, or may be segregated. Even in countries with more integrated educational systems, attaining equity in education and preparing students for life after their formal education can remain an ongoing problem. Investigate whether teachers are properly trained to work with disabled children, or if schools are placing untrained teachers with disabled students. You can also examine whether children in segregated classrooms (sometimes called “special needs” classrooms) are provided the same educational experience as children outside of those classrooms. Also worth a hard look: Are disabled children that can be in a mainstream classroom able to access them? Are these children in mainstream classrooms given proper support? Are schools well equipped to identify children who may have disabilities and need additional support?
Deep-dives into education for children with disabilities could include exploring whether students with disabilities are having similar outcomes after their formal education to their non-disabled peers. Do they face challenges after graduation? Can they physically access their schools and are they provided an equitable education and proper resources? If students are segregated, what does that education look like? For institutionalized children, are they receiving an education at all? Are parents forced to homeschool due to barriers in schools?
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. Ableism and negative attitudes towards disabilities permeate many societies, and even in communities with substantial legislation, rights, and resources, ableism can continue to be a major barrier to equity.
Investigate whether government officials or legislative policies are still using offensive language or outdated thinking to describe people with disabilities. Some ways you can approach stories about ableism is by looking at how it creates barriers to the things we all need to access. Are children with disabilities facing higher rates of bullying? Are disabled workers facing higher rates of discrimination in the workplace? How are the media and government organizations describing disability?
Disability Rights Movements: Just as other marginalized and minority groups have had civil rights movements, so too has the disability community. What does this movement look like in your area? Are people with disabilities represented in government or other decision-making venues? If there is a long history of the disability rights movement in your country, is it included in official historical accounts, textbooks, and educational curricula? Are there barriers to activists being able to organize, protest, and have their voices heard?
Physical Infrastructure: How does the physical infrastructure of your community serve — or fail — people with disabilities? Are there laws or legislation ensuring physical infrastructure is made accessible, and how does that apply to buildings or spaces that people struggle to visit? Are existing accessibility features, such as elevators, sidewalks, ramps, and curb cuts maintained at the same rate as other infrastructure or are they ignored and left to degrade? Are there laws and regulations that private businesses must comply with to make their buildings accessible — and do they follow them? Is a lack of physical infrastructure preventing disabled people from fully accessing their community? Who has a seat at the table for discussions about new construction?
Healthcare: Investigate whether people in your region can access or afford their own healthcare. In countries without universal healthcare, are there cases in which disabled people are forced to turn down a job because they can’t afford to leave their parents’ or spouse’s healthcare coverage? In addition, examine whether their healthcare plan covers their specific needs. Does it pay for physical therapy, are all medicines or medical devices covered? Or do disabled people end up settling for insufficient coverage because it’s the only care they can afford?
Supply Chains: How do supply chains and industrial issues impact access to essential medical equipment and treatments for individuals with disabilities? Are people unable to get catheters on time because of supply chain issues? Are medications out of stock due to hoarding or political reasons? Are refrigerated medications or specialized nutritional products frequently delayed or delivered late, thus putting someone’s health in jeopardy?
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. An example of this: a July 2021 article for The New York Times on the last school in the US to still use electric shocks to modify behavior by people with disabilities. In that story, Amanda Morris, a disability journalist now at The Washington Post, described the varying perspectives on the treatment, while holding the school accountable. As Eric Garcia, an autistic journalist, author, and senior Washington correspondent for The Independent, explained, “Who needs to be accountable to whom” is a key part of the Social Model.
Abuse and Neglect: These are common issues not only in institutions but also in independent living. 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. An example of this type of reporting is a 2022 BuzzFeed News investigation into a private equity firm that bought a large network of group homes for disabled people. The reporting found that, after the acquisition, people in those homes were subjected to systematic abuse and neglect.
Working from post-war Uganda, journalist Irene Abalo Otto says it’s important to interrogate how institutions and organizations meant to serve people with disabilities instead impact them. Otto’s work has focused on how groups that are supposed to serve Deaf and hard of hearing people in stories about exclusion in COVID precautions and survivors of sexual violence.
“It’s also some sort of call to action, because institutions can’t keep neglecting their role, and yet, keep telling us of all the achievements they’ve made and all the good things that they’re doing,” Otto said about the impact on the Deaf community in Uganda.
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. Such cases are not always properly documented and such data may not exist, but disability-memorial.org tracks reported cases of disabled people dying by filicide around the world. Deep dives into this phenomenon include looking into how filicide is handled by police and the criminal justice system, and what resources and accountability exist for family members or caregivers who are having thoughts of murdering a family member or loved one with a disability.
“Crip Tax”: This colloquial term expresses the notion that living costs more for people with disabilities. Sometimes products for people with disabilities, or that can be more essential to people with disabilities, cost more. It’s of a piece with other examples of pricing inequities, like how some products or services — for example, razors and dry cleaning — cost more simply because they’re branded for women. Investigate whether a so-called crip tax exists in your region and whether it impacts affordability and poverty for people with disabilities.
Non-Physical Types of Accessibility: How do public events meet the needs of people with sensory disabilities? Are elected officials providing sign language interpretation for important broadcasts or press conferences? Are websites accessible to those with vision disabilities? For example, in 2021, an investigation by KHN (Kaiser Health News) found that many government-run COVID vaccine websites in the US violated disability laws and were inaccessible to people who are blind.
Death and Morbidity: When people with disabilities die, especially in institutions, are their deaths counted and properly reflected in official statistics? Do doctors withhold medical care to people with disabilities in hospitals due to prejudices, potentially leading to poorer health outcomes or even death? Other interesting angles could examine if people with disabilities are being used as a justification to increase access to — or being pressured to undergo — medically-assisted suicide or euthanasia. Are people with disabilities who committed a crime facing death sentences despite concern from the community?
Forced Sterilization: The United Nations Committee on the Rights of Persons with Disabilities has called for prohibiting the practice of forced sterilization on people with disabilities. This practice, the UN said, “can be considered a form of cruel, inhuman or degrading treatment or punishment and breaches several international human rights treaties.” However, dozens of countries worldwide still legally permit forced sterilizations, 11 of which are in the European Union. In the US, a majority of states still allow forced sterilization.
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.