Uncovering the harms of exclusion
Since late December, COVID-19 has spread incrementally throughout the globe, infecting millions of people without regard to borders, race, or creed. However, the impacts of the virus are felt more acutely among certain populations, particularly those that have long experienced institutional discrimination and marginalization. Through Benetech’s long history of supporting access to information and inclusive education for people with disabilities, we have worked regularly with disabled persons organizations (DPOs), which has given us insights into the endemic, and often overlooked, discrimination facing people with disabilities.
People with disabilities are at higher risk during the pandemic for a myriad of reasons. Some disabilities are accompanied by underlying chronic medical conditions, increasing susceptibility to severe Covid-19 symptoms. However, many people with disabilities face risks that are societal, not medical, with governments and the health and education sectors either excluding them from their coronavirus responses entirely or actively causing harm through abusive practices. This risk is compounded for the disproportionate number of people with disabilities living in poverty and in densely populated group homes without sufficient options for sanitation or self-isolation.
Discrimination and Access Barriers Have Grave Consequences
Discriminatory practices stemming from the pandemic are prevalent in countries throughout the world. Advocates in the United States, for example, have decried the use of what is known as the “crisis standard of care,” which they say healthcare staff have applied subjectively to deny people with disabilities lifesaving coronavirus treatment like ventilators because they deem able-bodied individuals to be more deserving when medical resources are scarce. Such practices raise concerns among the disabled community and increase the distrust many already feel towards healthcare institutions. Distrust can carry fatal consequences. In Bangladesh, families have reported to DPOs that their children show symptoms of COVID-19, but they are reluctant to take them to the hospital because they do not trust the system to properly care for their children.
Another reason people with disabilities are unable to access testing and treatment is that governments have failed to disseminate information and provide educational material that is accessible to different populations, such as material in Braille, closed captioning, or that can be read by screen readers. Our partners have shared many examples of the harm that this has caused. In Kenya, there have been reports of police officers chastising and beating people for breaking state imposed curfew laws they did not even know were in place. In Colombia, food aid to those economically suffering due to lockdowns has been distributed through lists that excluded people with disabilities prior to the pandemic and for which they had no means of accessible registration. As a result, they were not provided with much needed assistance.
Schools across the globe have closed down to prevent the spread of the virus, but failed to provide accessible learning options for those with specialized needs, excluding children who have no means to access their right to education.
Advocacy and Support during Crisis is Bolstered by Documentation
As these avoidable risks have escalated, communities and advocates have not remained silent. After around 400 organizations signed a joint letter admonishing the use of the “crisis standard of care” to exclude certain people from receiving lifesaving treatment, the civil rights office of the US Health and Human Services Department issued a statement explaining that the Americans with Disabilities Act prohibits discrimination during a pandemic. To provide redress and end discriminatory practices, US-based DPOs have filed civil suits in several states. International coalitions have used the hashtag #nobodyisdisposable to build support for the disabled community online. Mutual aid groups have been formed to provide food assistance to vulnerable members of their communities, including immigrants, the elderly, and persons with disabilities.
But much of the discrimination is not being reported to advocates or covered by media outlets. More can be done to disseminate resources that facilitate documentation of institutional and societal discrimination and generate the evidence that local, regional, and international DPOs can use to advocate for better responses and litigation on behalf of those who have experienced discrimination. While some human rights documentation tools exist, they are often inaccessible to those with different forms of disabilities and training is required to build the capacity of DPOs to incorporate such tools into their practices.
Accessible Data Collection Can Help Drive Accountability and Equitable Emergency Responses
This is where Benetech’s history supporting human rights defenders and providing accessible information offers a path forward. Benetech is partnering with DPOs around the world to create a digital accessible platform that empowers people with disabilities with information about their rights and a means to document their experiences. Our Data for Inclusion platform enables DPOs to disseminate relevant, localized information in accessible formats as well as systematically collect data from their members of the impacts of the pandemic and how localities are responding to it.
Data for Inclusion is envisioned to help people with disabilities record progress and barriers to realizing a range of rights – from access to education, to employment, to political participation – as well as report abuses, such as governments failing to make polling locations accessible. In light of the evolving circumstances, the risks and harms of exclusion are more immediate than ever, sometimes with life threatening consequences.
To hold governments accountable and encourage a more equitable and inclusive Coronavirus response, we must document and share these accounts of exclusion and discrimination. Accessible data collection tools and processes can help people with disabilities generate evidence based on their own experiences that will create additional pathways for advocacy on the current crisis and more inclusive and equitable emergency responses in the future.
Shabnam Mojtahedi is Senior Human Rights Program Manager at Benetech.
Interested in learning more about implementing Data for Inclusion in your work? We’d love to hear from you.