How Pandemic Response Measures Harm People With Disabilities

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.

This entry was posted in Commentary and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

10 Responses to How Pandemic Response Measures Harm People With Disabilities

  1. You nailed it – all the concerns we have now. And so many that are disability-specific.

    I worry that society will be increasingly resentful of the COST of taking care of the extra needs of the disabled, and that is very dangerous, because it only takes a moment of not paying attention properly to let the virus get in.

    We moved to a retirement community two years ago, and were just getting to know our neighbors when the pandemic hit. It’s made everything much more difficult, and the amenities have dribbled to nothing: it’s hard to be carefree when EVERYONE who lives here is over 65, and many have additional physical or mental problems. Many of us haven’t seen family since this started – except on screen. It is VERY hard on people in advanced levels of care.

    I also worry that we won’t be first to get the vaccines – and at the same time don’t want to be because of the rushed way ‘they’ are trying to create them.

    I did NOT expect something of this magnitude – while I’m still worried about the big one in California, and the fires, and the election…

  2. Thank you for this informative and thorough article, Jennie. I thought I was knowledgable about how the pandemic has put into stark relief the difference between how able-bodied people are treated and valued compared to people with disabilities, but your article has filled in many gaps for me…and that will help me be prepared. You’ve done a great service to those of us who are disabled.

  3. Julie Horowitz says:

    Bravo. You nailed it.

    In particular, the sudden ability to get have dr. appts online. How many times have I missed critical appts because I’m in a relapse and consequently missing timely diagnoses.

    • Jennie Spotila says:

      I know. The sudden availability of telemedicine is what has been the most bittersweet to me. I feel so much better without having to go out to appointments.

  4. Gay Lyon says:

    I share your mixed feelings about the sudden availability of online services which people in the disabled communities have long requested and been told it wasn’t feasible. The one which particularly bothers me is online or phone medical appointments. Being almost completely housebound, I have at times gone without needed healthcare because I couldn’t access it, but suddenly now it’s available. You’d think that medical care, if nothing else, would be made available to chronically ill people, but even there, abled people are catered to first. It hard not to feel a touch resentful.

    • Jennie Spotila says:

      I agree about telemedicine. I really hope we can hang on to it, and I think we probably will (although it might mean a fight).

  5. andrea weeding says:

    Thank-you for a very informative article, I have M.E. and live in the U.K. I may also have had Covid-19. I’ve been struggling to get well since March, virtually no help from doctors, who I believe are uneducated about M.E. and it seems know virtually nothing about Cv19. But some healthy people begrudge having to wear a face mask, a minor inconvenience compared to twenty years of M.E. or potentially the same term with what the press are now calling “Long Covid” I believe that “society” ignores the plight of the long term ill and disabled at their peril, because what goes around comes around!

Leave a Reply

Your email address will not be published. Required fields are marked *