This past Thursday, December 3rd, was International Day for People with Disabilities. First introduced in 1992 by the UN General Assembly, the day aims to recognize and further promote the rights and well-being of people with disabilities on an international level by increasing the awareness of their situations in political, social, economic, and cultural life. This day is particularly important this year as COVID-19 has exacerbated many of the challenges faced by people with disabilities.
In this pandemic, we have all seen how vital it is to have accurate information, yet for people with hearing, visual, or mental impairments, gathering useful information in the chaotic news cycle is exponentially harder, often leaving them vulnerable and unprepared.
Once informed about important health measures such as frequent handwashing, mask wearing, and social distancing, certain disabilities can make it more difficult to follow them. While masks are inconvenient for most, they make it especially difficult for people with hearing impairments to understand and communicate with others if they rely on lip reading.
Caregivers or aids are also often unable to follow social distancing in the same way others are, putting the people they care for at an increased risk. Coronavirus can be more severe for people with certain underlying health conditions, and adults with disabilities are on average three times more likely than nondisabled adults to have heart disease, a stroke, diabetes, or cancer.
People with disabilities also make up large percentages of several groups more heavily impacted by the pandemic, such as those in the prison system (32% of federal prison inmates and 40% of jail inmates have at least one disability), people living below the poverty line (26.9% of people with disabilities compared to 12.2% of nondisabled people), and other high risk groups.
Switching to remote learning has been difficult for all of us, but the transition is particularly challenging for students with disabilities and special ed teachers. Many remote learning technologies and software are not conducive to certain disabilities (for example, not all video software includes closed captioning). Additionally, some special ed teachers are unable to effectively teach their students remotely, leaving many students without an education during the pandemic.
When it comes to receiving care for COVID-19, people with disabilities have had inequitable access. Despite the Department of Health saying doctors may not use ability as a means to decide who gets a ventilator, many state governments have discriminated based on the misconception that people with disabilities do not have the same quality of life. For example, Alabama decided that hospitals should not give mechanical ventilators to people with severe disabilities. This law and some others have since been challenged and removed, but there are still many other barriers to overcome.
One important way in which these inequalities can be addressed is through more representation in politics and the medical field. 1 in 10 officials elected to office in the United States report having a disability, which is significantly lower than the 1 in 4 national average for adults. Additionally, only 2 percent of practicing physicians have a disability, a severe underrepresentation that leads to bias and misinformation within the medical community. This, combined with the stigma around disabilities, means that policy and emergency responses often do not adequately protect people with disabilities.
Another major step that needs to be taken in order to address the challenges specifically faced by people with disabilities is to gather disability disaggregated data. There is currently no infrastructure in place to gather data about COVID-19 testing, infection, mortality, or outcome that is separated by disability status in the United States. This means that we can’t generate solutions to many problems that may exist because we have no way of knowing about them.
Additionally, this lack of data makes it difficult to equitably distribute resources and direct policies (data separated by age, race, geographic location, and pre existing conditions have been critical for both of these). This is not a problem only of this pandemic; there has been a historic lack of disability data collected in public health and medical surveillance, making it more difficult for people to access equitable medical services.
However, there is a silver lining: the exacerbated inequalities faced by people with disabilities during this pandemic have prompted more awareness and conversations about disability and inclusion. We have the opportunity to rebuild in a way that is more inclusive and equitable than ever before, but it will require conversations around ability and privilege in our communities, as well as increased representation of people with disabilities in positions of power. As individuals, we must think critically about how we view disability, and, as a community, we must work to ensure dignity and access for people with disabilities.