The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like myself and my husband, life in this pandemic is even more challenging than it was before.
The lives of people with disabilities are not valued as much as the lives of abled people, and we have seen that confirmed repeatedly over the last few months. Overall, people with disabilities are facing increased barriers right now, including barriers created by the very public health measures that are meant to protect people. We need proactive thinking and solutions to address these barriers now and avoid them in the future.
From the very beginning of the pandemic, public messaging made it clear that disabled lives are not valued the same as abled lives. News reports and official statements emphasized that *only* the elderly and people with chronic illness were at risk for complications and death from COVID-19, so the general public could feel safe. More recent calls for a “herd immunity” approach are even worse. Intentionally allowing the coronavirus to burn through the population and accepting the resulting enormous death toll is bad enough, but it is a disturbingly personal threat when your own life is one of those being offered up.
The value of disabled lives is calculated in a very literal way by the crisis standards of care used in many states. In the event of a shortage of medical resources, crisis standards of care provide frameworks for deciding which patients get access to resources like ventilators. Multiple states’ guidelines included quality-of-life judgements as part of the decision making, as in, “this person isn’t worth saving because their quality of life is so bad anyway.” Some guidelines expressly excluded people with specific disabilities such as dementia and “severe mental retardation.” Multiple advocacy groups have filed civil rights complaints, and some states modified their standards as a result. Yet there is at least one case where a disabled man was allegedly judged to not be worth saving because of his disabilities.
It’s not just public statements that show us that our lives are not valued the same as healthy, abled lives. The actions of individuals convey that message too. I am at increased risk for COVID-19 complications, as is my husband. On the few occasions I have left my home since March, I have seen people who are not wearing masks properly (or at all) or who do not maintain social distance. That behavior potentially risks my life, and it tells me that my life does not matter as much to people as their personal desire to socialize or avoid wearing a mask. People do not understand that even if they do not get sick themselves, they could make someone else very sick. They don’t make the connections between their personal behavior and the impact on public health, or on mine.
Many of our new public health measures and socio-economic adaptations have actually created new barriers for people with disabilities. For example, mask wearing is essential to reduce the spread of infection but it makes communication more difficult for deaf/hard of hearing people who need to read lips and/or rely on facial grammar. Visual cues for social distancing, such as marks on store floors, do not help people with impaired or low vision. As restaurants have moved dining outdoors and taken over sidewalks, people in wheelchairs can no longer safely move down the street.
Even our access to life-sustaining products like food and medicine has been negatively affected by the pandemic. The sudden rush for grocery home delivery services made it impossible for those of us who require these services to get our normal deliveries. Some food assistance programs could not be used for online ordering, and it took a massive advocacy effort to get at least one such policy reversed. Access to medications has also been impacted. Slowed mail delivery meant prescriptions were dangerously late. As certain prescriptions are prematurely promoted as treatments for COVID-19, people who rely on those drugs for other diseases are unable to get their medications, as happened with hydroxychloroquine.
Stay-at-home orders have challenged everyone. In many ways, my disability has made it easier to adjust to life at home during the pandemic. Abled people may now have a better understanding of what it is like to be disabled, because now they have personal experience of being prevented from enjoying their normal activities. Unfortunately, there are serious difficulties for disabled people who must continue to stay at home. For example, home health aides generally do not get paid sick leave and have been affected by PPE shortages, so people who require home health assistance must accept the potential increased risk of aides bringing the virus to them.
There is one form of access that did actually improve for many people with disabilities. When the country shut down in March, work and school moved online. Cultural and social activities did too. Suddenly, people who normally could not get outside the home for activities were able to join in. It became so much easier to work and receive healthcare, because we did not have to deal with the physical barriers of getting there.
As wonderful as this is, it is also hard to swallow. People with disabilities have needed and requested the option to work or attend school from home for years. We have been denied jobs and education because employers and schools insisted it was too burdensome to provide online access. Yet now that abled people need and want these options, it is instantly feasible. It is also true that online access is not accessible to everyone. Some people with low vision can’t use screens; some deaf/head-of-hearing people can’t understand video without captioning. There are many disabilities that make it difficult to use computers, and millions of people do not have access to the internet at all.
Some of these significant negative impacts on people with disabilities are unavoidable in the pandemic. People with chronic illnesses are at more risk from the virus, and only a treatment or vaccine can change that. However, many impacts could be moderated if disability issues were considered proactively. Our safe access to food, medicine, and healthcare must be guaranteed. Public health measures must be designed to work for people with disabilities, instead of assuming everyone can see a sign about social distancing or walk around larger restaurant seating areas. Reliance on technology solutions should also not automatically exclude those who can’t use them the same way as abled people.
People who are at higher risk for COVID-19 complications need specific guidance on what to do now that the country is re-opening. For those of us who need to continue to stay-at-home until there is a vaccine, which could be another year or more, we need additional social services and support. Our society has had eight months to learn and make adjustments for pandemic life. It is time to focus resources on helping vulnerable people cope with an extended personal shutdown.
We should also bear in mind that this pandemic will increase the number of people with disabilities. COVID-19 may cause long-term or permanent damage to the lungs, heart, and nervous system, even in people who do not get seriously ill. It is also possible that some people may never recover from COVID-19, the “long-haulers.” At this point, no one can say for certain what the individual, economic, and social costs of COVID-19 related disability will be. That is all the more reason to start treat disabled lives as equally valuable as abled lives.