People with disabilities should lead discussions about their rights and needs, especially during pandemic
Advocacy organizations for people with disabilities discuss the need for equitable access to resources and centering their voices in the creation and implementation of best practices, particularly during the COVID-19 pandemic
AUG. 23, 20206 AM
From the beginning, organizations and individuals advocating for the rights of people with disabilities have been working to make sure the current coronavirus pandemic doesn’t result in a further erosion of those rights and accessibility to necessary resources.
“The spread of COVID-19 has had a profound impact on people with disabilities in California, many of whom are at a higher risk of developing life-threatening complications if they contract the virus,” said representatives from Disability Rights California, a nonprofit advocacy organization providing legal services to people with disabilities.
Steps taken to stop the spread of the virus have affected employment, education, in-home support services and basic needs, such as food, medication and transportation. They have also led to an increased risk of abuse and neglect in places like detention centers and nursing facilities, where oversight has been limited.
Part of the answer to the question of how to ensure equitable care and access for people with disabilities is to make sure that people with disabilities are taking the lead in these discussions and implementations of policies and best practices, says Kerry Thompson, senior officer of communications, inclusion and analytics with the Disability Rights Fund. It’s an international grant-making organization that supports people with disabilities in building diverse movements, ensuring inclusive development agendas, and achieving equal rights and opportunities.
She took some time to discuss discrimination against people with disabilities, concerns the pandemic has raised, and some ways institutions and systems can best respond to these issues. (This email interview has been edited for length and clarity).
Q: What are some issues of concern during this pandemic that are specific to people who have varying types of disabilities?
A: What readers need to understand is that people with disabilities were still fighting for their basic rights before the pandemic, both in the United States and worldwide. The pandemic has created even greater challenges for inclusive education, access to information, access to employment, and especially, access to health care. What does “inclusive” education look like in the pandemic era, especially in a remote learning setting? How to protect people with disabilities living in residential group settings, such as institutions or nursing homes? With officials providing daily briefings, is the information accessible for people with disabilities?
For people who are DeafBlind, like myself, the pandemic has meant that our way of communicating through tactile methods (i.e. “touch”) have been pushed further into isolation as “touching” and standing in close proximity to other people is verboten and, some say, a matter of life and death.
Q: When organizations talk about discrimination against people with disabilities, can you talk a bit about what that looks like?
A: Discrimination should be viewed as two types: the blatant and the subtle. The blatant discrimination are the types when it is very clear that a person with a disability is being denied their rights due to their disability. For example, a school that fails to provide a sign language interpreter requested by a Deaf student, or a wheelchair user who is told they are not “capable” of doing a job. There’s clear evidence and a paper trail to show the discrimination.
The subtle discrimination is exactly that, subtle, so that even a person with a disability is not entirely sure if they were discriminated against based on their disability. For example, a person with a disability who applies for a job but does not receive an interview because human resources do not look at resumes of someone who has a disability. They can always say that the candidate was simply not qualified for the job, but are careful to avoid mentioning disability as a reason.
Another instance of this subtle discrimination is how unprepared hospitals and health care were in addressing care for people with disabilities during the pandemic. Every health care system needs to have a plan in place for disasters that also includes how to provide care for people with disabilities in emergency situations, such as natural disasters, man-made disasters, terrorism, or a pandemic. Because of the subtle discrimination, a lot of outright discrimination has happened, such as people who are Deaf, who rightfully assumed that the hospital would not have access to a sign language interpreter on-site, who would try to bring a family member or a friend as an alternate to support communication, but were told that they were not allowed to bring anyone in, even someone who would enable their rights.
Q: Some advocacy groups have noted the importance of ensuring that the availability of resources, supplies and care not be based on inaccurate assumptions about life with a disability. Do you mind helping people understand what some of those assumptions look like? And what would be examples of how to ensure that people with disabilities receive equitable care?
A: One question that many people were asking in the beginning of the pandemic was, “Where should we go if we need to be tested?” People with disabilities were asking a slightly different question: “How will we be able to go or know? How will a person with a physical disability get to a testing site? How will a person who is Deaf be able to communicate with tele-health services if there’s no way to request a sign language interpreter or a captioner?” A key mantra for the Disability Rights Fund is “nothing about us without us”; people with disabilities need to be part of the discussion, they need to be part of hospitals’ and governments’ emergency planning teams, and be represented on advisory committees. This is a mantra that needs to be heard worldwide. It’s not an American concept or an African concept; everywhere, the world’s 1 billion people with disabilities need to have a say.
Q: With discussions around the issue of rationing and allocating health treatment during this pandemic, what would non-discriminatory practices look like, that would center the inclusion and empowerment of people with disabilities?
A: I view disability rights amid the pandemic in the same manner of the reopening phases. Phase 1 is for people without disabilities; phase 2 is for people with the “easy to accommodate” disability that requires little action from society; phase 3 includes people with slightly harder to accommodate disabilities; phase 4 is the disability type that is extremely difficult to accommodate and because often these disability types are in the minority within the disability population, people will overlook them.
While I have been seeing governors and mayors have sign language interpreters at their briefings, I have not seen accessible communications from hospitals for those who are Deaf. Hospitals should be providing a video blog (“vlog”) that includes critical health information in sign language. Health care systems should be working in close proximity with local organizations of people with disabilities who can help do outreach to disability communities. Organizations should be thinking about both what they communicate, and how they communicate it. Is your social media accessible? Is your website accessible? If so, great! Do people with disabilities know about your social media and website? Probably not, thus the importance of doing targeted outreach. In short, make your information accessible.
Q: Have there been any emerging problems that advocacy groups have been learning about since the pandemic began? If so, what are those, and what kinds of responses would you like to see to address these concerns?
A: In answering these questions, I have been varying my responses between my perspective as an American with a disability, and in my role working for the Disability Rights Fund, which works outside the U.S. In both viewpoints, the key challenges are access to information and access to health care. In both the U.S. and outside the U.S., we see disparities across race, gender, ethnicity, as well as between those based in cities versus those based in rural areas.
I’d like to leave you with this one last point: when people with disabilities take the lead in fighting for their rights, it does lead to change, as you can see by the stories of grantees from Asia, Africa, the Caribbean, and the Pacific and what they have achieved in fighting for their rights.