At this point in the pandemic, most Americans take the changes COVID-19 made for granted. Responsible citizens dutifully put on masks when they leave their homes and disinfect their hands after every encounter. People practice social distancing or stay at home, while restaurants across the country have moved tables to streets and sidewalks to accommodate those who want to enjoy a meal but don’t like to sit inside.
All of these measures are designed to stop the virus from spreading, which is important. Unfortunately, they don’t take into account the millions of Americans with disabilities. For me, as a woman with cerebral palsy, walking and speaking are so strenuous that my breathing is often impaired.
To protect myself and others, I always wear a mask when I go outside. But wearing a mask – no matter how thin or how well filtered it is – makes it extremely difficult for me to breathe and I can’t walk for long without getting out of breath. As a result, I have to limit the number of trips I can take, which has forced me to rely on my partner to do most of my errands. As a result, I’ve lost a sense of independence.
I’m not alone. People with disabilities make up the largest minority in America: nearly 61 million, or 26% of adults, live with a disability. However, we have been overlooked by those who created COVID-19 safety guidelines. For example, masks prohibit the hard of hearing / deaf from reading lips, blocked sidewalks make wheelchair users difficult, and the need for constant hand washing and general fear of the pandemic can trigger people with obsessive-compulsive disorder (OCD).
Prior to the pandemic, I switched from a wheelchair to my feet to get around New York City, which is known to be inaccessible to those who use wheelchairs or other mobility aids. Over the years I have had the privilege of building strength and balance in my muscles, getting to a point where I no longer had to rely on my wheelchair but when the pandemic and wearing a mask became dangerous to my walking , I went back to travel around Brooklyn in my wheelchair. On a good day, the city is difficult to navigate for wheelchair users, but when the sidewalks were closed to maintain social distance it became almost impossible.
People with different disabilities are affected differently
Government-mandated quarantine and social distancing were nothing new to Jocelyn Ricarda Mondragon, a 25-year-old Latinx activist and disability rights educator. Mondragon lives with arthrogryposis multiplex congenita, which affects her mobility due to multiple joint contractures and muscle weakness, and she uses a wheelchair. Even before the pandemic, she was home tied as her hometown of New Orleans is largely inaccessible to people with mobility issues.
“I didn’t just feel left out [non-disabled] People, but also with disabled communities, because apart from my experience with disabilities, being home-bound is another experience, “explained Mondragon.
Experiencing the public complaining about being socially distanced and staying home deeply frustrates them and has adversely affected their spiritual wellbeing. The public’s lack of empathy for people who have long been home-bound made Mondragon feel invisible and as if their lifelong experiences were invalid.
Social isolation can adversely affect the mental health of people with disabilities. If you are unable to get in touch with loved ones – either in person or virtually – when a disability and lack of accessibility are already limiting social engagement, this can increase feelings of loneliness and depression.
A common way to combat social isolation has been to connect with family members and loved ones through video conferencing platforms. However, this is not possible if you don’t have a good internet connection or no access at all, which is often the case with people with disabilities. According to a 2017 study by Pew Research, only 25% of adults with a disability have stable internet access, compared with 42% of adults without a disability.
Vontisha Fludd, a research advisor to the American Association of People with Disabilities, can confirm the lack of digital accessibility. With support from the New Practice Lab in New America, Fludd is studying critical ways the pandemic is hindering access to critical services within the disability community.
“Due to the conversion of many processes to online platforms, not all websites are accessible for people with disabilities,” wrote Fludd in an email. “The lack of access to relevant information, particularly on COVID-19, is leaving a whole segment of our communities out. In addition, access to affordable internet, devices and technical assistance excludes the disabled community from achieving the quality of life it deserves for example people who live in [group settings where they can’t let outsiders in] lose access to the people who are normally in their life. They become extremely isolated and seldom have the independence to get what they need online. “
The pandemic is exacerbating existing inequalities
Bonnielin Swenor, MPH, Ph.D., is Associate Professor of Epidemiology and Ophthalmology and Director of the Disability Health Research Center at Johns Hopkins University. Her work focuses on addressing disability and justice, specifically to shift the narrative in society from living with a disability to thriving with a disability. For Swenor, the social and health impact of the pandemic has brought a sense of urgency to her work.
Swenor’s research team collects quantitative data on the unique effects of the pandemic on people with different disabilities and uses these results to implement inclusive public health measures. One discovery was that companies are not adequately welcoming people with visual impairments because the vast majority of our work and life has moved into virtual space. Because important information about COVID-19 is in the text on websites, most of which have no accessibility, it is inaccessible to visually impaired users.
“”[The pandemic] has increased inequalities in our society for many groups and certainly for disabilities, “explained Swenor. These stocks mean more to the disabled community right now. As someone [who’s] Visually impaired, I can feel the effects and I understand how early in the pandemic, disability wasn’t fully part of the conversation. “
A brighter street ahead
Swenor also mentioned that some political groups include the advocacy of disability. “In the areas of doing the right things, they are connecting with disabled people, disabled communities and disabled advocacy groups as they set guidelines. There are few, but it has happened,” Swenor said.
For example, Microsoft has added people with disabilities to its product development teams to improve access to technology, and the United Nations added a team to include people with disabilities in its COVID-19 response efforts.
The disabled community is a force to be reckoned with. Our motto is “nothing about us without us” which means that guidelines and guidelines cannot be created for us without people from our community being part of the decision-making process. President-elect Joe Biden has heard and responded to the voices of the disabled community. Since his victory, he and Vice President-elect Kamala Harris have been busy developing their COVID-19 relief efforts that include a specific component to address disability.
As a diversity and inclusion journalist focusing on disability-related issues, I am fortunate to have firsthand experience of the pandemic with a disability. It helps me see and address what other reporters often overlook and enables me to reach this underrepresented community. While COVID-19 is far from over and the worst is yet to come, I hope the public now includes the disabled perspective in relief efforts and security measures.
Disability Considerations During the COVID-19 Outbreak, WHO