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by kerry dobransky and eszter hargittai

people with disabilities

during COVID-19

The spread of COVID-19 across the globe hit everybody hard, bringing

to the forefront concerns for the lives of older adults, those living in

elder care facilities, and those with existing medical conditions, groups

for which the pandemic poses a particularly high risk. While mask

mandates and public service announcements from celebrities and

politicians are peppered with pleas for these vulnerable populations,

others argue freedom and economic recovery are worth risking their

lives. What is now a very public debate has been played out behind

the scenes long before this current crisis. People with disabilities are

used to having their worth questioned, their value and cost to society

weighed, their risk calculated, all with relatively little voice themselves.

What is it like to live with this increased risk during a pandemic? In this

piece, we compare the experiences of people with disabilities (PWD)

with those without during the Coronavirus pandemic.

47FA L L 2 0 2 0 c o n t e x t s

Findings revealed distinct vulnerabilities to COVID-19 for PWD

and those around them. We learned that in some ways their

experiences mirror those of the wider society, but in others,

PWD’s marginalized status was reflected in their concerns and

fears during a societal crisis.

social worth in a pandemic People with disabilities are accustomed to living life through

the paradox of invisibility and hypervisibility. Erving Goffman

long ago laid out the discomfort “normals” feel when they are

confronted with stigmatized individuals in interaction, leading

to awkwardness for both sides. To avoid this, people at times

will go out of their way to ignore people with disabilities, what

Spencer Cahill and Robin Eggelston refer to as “nonperson

treatment.” On the other hand, Cahill and Eggelston point out

that some people will assume the paternalistic right to “help”

those with impairments in ways they did not ask for or need.

Many people with disabilities make use of assistance from

others to carry out their daily activities. From a disability rights

standpoint, however, the assistance should be directed by the

impaired individuals themselves.

Polite interaction is one thing, but when people with dis-

abilities enter healthcare contexts, issues of risk and worth

come to the fore. The stakes can be life and death. Angela

Frederick has shown how pregnant women or mothers with dis-

abilities are subjected to the “medical stare.”

While their own needs for accessible care

remain invisible, they are seen as a risk to their

(future) children simply by having a disability,

with no clear medical risk evident. Moreover,

their pregnancy itself can be seen as wrong

because they could pass their disability on

to their children—implying (or stating) that

such a child should not be born. As Frederick points out, all

of this occurs while relatively little effort is made to make the

mothers’ own medical care accessible. Both David Sudnow and

Stefan Timmermans have demonstrated how such estimations

of worth can translate into the likelihood of death in health care

settings. As the recent statement by Laura Mauldin and others

in the American Sociological Association’s Footnotes newsletter

highlights, these issues show how disability is a major axis of

inequality that is highly salient during this pandemic.

The social worth of the vulnerable such as people with

disabilities was raised through debates and protests regarding

state lockdown policies. In addition to protesters displaying

homemade signs about needing haircuts, trusting in Jesus, and

governmental overreach, one person in Tennessee held a sign

demanding, “Sacrifice the Weak | Reopen TN.” A California city

commissioner spelled out the sentiment in even more detail in a

Facebook post: “A herd gathers it [sic] ranks, it allows the sick,

the old, the injured to meet its [sic] natural course in nature.

[..] Then we have our other sectors such as our homeless and

other people who just defile themselves by either choice or

mental issues. This would run rampant through them and yes i

am sorry but this would fix what is a significant burden on our

Society [sic] and resources that can be used.” The post garnered

comparisons to Nazi eugenicists and led to the commissioner’s

removal. Nevertheless, the Lieutenant Governor of Texas, Dan

Patrick, argued that many grandparents, including himself,

would be (or should be) willing to sacrifice their lives to reopen

the economy, adding, “So my message is let’s get back to work,

let’s get back to living. Let’s be smart about it and those of us

who are 70-plus, we’ll take care of ourselves.” After his National

Economic Council Chairman Larry Kudlow stated that reopening

the economy would entail “some difficult tradeoffs,” President

Trump acknowledged that the death toll is “bad,” but nonethe-

less insisted that the country should reopen.

These discussions about the priority of protecting the vulner-

able play out in the context of scarcity resulting from the social and

economic upheavals of the pandemic. Hoarding and supply-chain

issues surrounding food, toiletries, medications, and other basic

necessities favor those with the resources and mobility to hunt

them down. Even worse, when healthcare resources are stretched

thin, official policies are referenced to determine who has priority

to life-saving care. Unfortunately, as media producer and activist

Alice Wong, who herself lives with disabilities and regularly uses a

ventilator, put it, “The ethical frameworks for rationing often put

people like me at the bottom of the list.” The U.S. Department of

Health and Human Services Office of Civil Rights issued a bulletin

alerting medical providers that rationing medical care based on

disability is discriminatory and illegal. However, prominent medical

scholars such as Ezekiel Emanuel and others have justified such

rationing, and guidelines that do so remain in place in some

healthcare organizations and state policies.

Such considerations have historically been made without

input from people with disabilities themselves. Too often, the

need for assistance has been equated with childlike dependence

on the paternalistic whims of service providers and politicians. As

Sharon Barnartt and Richard Scotch have pointed out, the hard

work of disability activists has led to changes, but as the pan-

demic has underlined, there is still work to be done in ensuring

PWD are given voice in the decisions that impact their lives. One

step in addressing our current crisis is to document the experi-

ence of those impacted by it, especially when such experience

is discounted or silenced. This is what we did.

surveying americans during lockdown In early April, we surveyed a national sample of US adults

One step in addressing our current crisis is to document the experience of those impacted by it, especially when such experience is discounted or silenced.

Contexts, Vol. 19, Issue 4, p. 46-49. ISSN 1536-5042. © American Sociological Association. http://contexts.sagepub.com. 10.1177/1536504220977935.

48 contexts.org

about their experiences with COVID-19. Hosting the survey on

the Qualtrics platform, we contracted with the online survey

company Cint to reach 1,374 American adults. We set quotas

for age, gender, education, and region to match U.S. Census

figures. Cint’s panel has a double opt-in format: people have to

sign up for inclusion in the panel and then verify their interest in

participation, an approach that has been shown to result in few

or no significant differences compared to traditional modes of

sampling. To be sure, our study would have missed people in the

most severe of circumstances, e.g., fighting COVID-19 on respi-

rators in hospital beds, but those are the types of people unlikely

to be represented in other types of survey projects as well.

At the start of our data collection, over 300,000 Americans

had tested positive for COVID-19, and over eight thousand

had died. We asked respondents whether they had various

long-lasting conditions, and overall, just under 16 percent of

respondents had one or more, matching figures from the U.S.

Census Bureau’s Current Population Survey (our questions about

disabilities are similar to the ones they use). We asked about

the following communicative disabilities: blindness or severe

vision impairment even with glasses or contact lenses; deafness

or a severe hearing impairment even with a hearing aid; and

serious difficulty having their speech understood. Such people

make up somewhat less than six percent of the total sample.

We also asked about serious difficulty walking or climbing stairs,

dressing or bathing, and typing on a traditional computer key-

board. These we grouped together as physical disabilities; such

people account for a bit over eight percent of the entire sample.

We asked if respondents had serious difficulty concentrating,

remembering, or making decisions (hereafter, cognitive impair-

ments), a group that makes up five percent of the total sample.

Finally, we asked if people experienced serious difficulty going

outside the house alone, which three percent of the sample

indicated. We then looked at whether there are differences

between each of these groups compared to the rest of the

sample when it comes to personal experiences with COVID-19,

elevated worries since the outbreak, and the pandemic’s effects

on home circumstances. Here is what we found.

PWD reported COVID-19 as featuring much more promi-

nently in their personal lives and social circles than people

without disabilities (Respondents’ personal experiences with

COVID-19). Among PWD, 64 percent reported health conditions

that put them in the medically high-risk category for COVID-19

compared to under a third of those who have no disabilities.

One in ten PWD in our sample reported having been diagnosed

with COVID-19 compared to just one case among the 1160

participants without impairments. PWD were also much more

likely to know others with the novel coronavirus: 23 percent of

PWD said they knew someone. This compares to 14 percent of

people without disabilities reporting they know someone with

COVID-19. PWD were also much more likely to know people

who have died from the disease: 13 percent with any disability

reported this compared to four percent of others. It is clear from

these statistics that PWD had very different personal experiences

with the pandemic. Next, we turn to how these were reflected

in their home situations.

home circumstances We asked respondents: “How does the current Coronavirus

pandemic affect your circumstances at home?” inquiring about

both positive aspects like having more calmness and relaxation

as well as negative repercussions like feeling trapped. PWD

expressed notable experiences on both ends of the spectrum

(Reported pandemic effects on home circumstances). Thirty-five

percent reported their family relationships were stronger during

the pandemic, and 24 percent reported more calmness and relax-

ation, compared to 27 percent and 20 percent of those without

impairments, respectively. Especially notable here are people

with communicative disabilities, of whom 29 percent reported

experiencing more calmness and relaxation. On the other hand,

nearly a third (30 percent) of PWD reported more conflicts at

home and over half (51 percent) reported feeling trapped, with

Respondents’ personal experiences with COVID-19

20

40

60

80

100 percent

Any disability No disability

Is high risk Knows someone with COVID-19

Knows someone who died of

COVID-19

Has COVID-19

Reported pandemic effects on home circumstances

20

40

60

80

100

Any disability No disability

Feeling trapped*

Lack of personal space**

More conflict**

More personal

time

Stronger family*

More calm

Negative effects Positive effects

*p<.1 **p<.001

percent

49FA L L 2 0 2 0 c o n t e x t s

19 percent and 45 percent of those without disabilities saying

these characterized their home situation. Two thirds of those with

cognitive impairments (66 percent) and 57 percent of those who

had difficulty leaving home reported feeling trapped, perhaps not

surprisingly as these are two groups particularly likely to feel the

impact of limited physical contact with others outside the home.

Those with impairments were also more likely to report a lack of

personal space or alone time: over a third (34 percent) reported

this, with only 23 percent of those without disabilities saying

this characterized them. Overall, a larger portion of those with

disabilities reported negative experiences in their homelife, with

63 percent reporting such experiences compared to 56 percent of

people without impairments. There was no statistically significant

difference between people with and without disabilities in report-

ing that they have more personal time, with 42 percent of PWD

versus 45 percent of those without reporting this.

worries Another question asked respondents: “Since the Coronavi-

rus outbreak, have any of the following been worrying you more

than usual, even if only in a minor way?” Domains we inquired

about included finances, safety, Internet access, as well as future

plans (Reported worries since the coronavirus outbreak). In many

areas, PWD as a whole did not notably depart in their wor-

ries from those without reported impairment: concerns about

finances, safety, Internet, and future plans showed minimal

differences between the two groups. Here we highlight some

of the statistically significant differences we found.

In a time of hoarding, PWD were particularly concerned

about obtaining food or medication: 62 percent mentioned this

concern compared to 48 percent of those without disabilities.

Boredom was another worry disproportionately expressed by

those with impairment, with 45 percent reporting it compared

to 38 percent of those without impairments. Respondents with

cognitive impairments were especially likely to report worries,

expressing higher levels on nearly every worry we asked about.

Unexpectedly, a smaller proportion of people with physical dis-

abilities expressed worry about their future plans: 42 percent

reported this worry, compared to 49 percent of those without

disabilities. Overall, while PWD did not vary that much from

those without in their worries, there is nonetheless a statistically

significant (p<.01) difference in the number of worries they

indicated, which is 3.0 for PWDs compared to 2.7 for others.

People with communicative disabilities stood out from

those with other disabilities in their concerns. While respondents

with these impairments expressed no difference from others in

worries about getting food or medicine, they were particularly

worried about their Internet access (something no other disability

subgroup reported). Twenty-seven percent indicated this worry,

compared to just 17 percent of those who did not report having

a disability. This likely reflects that these types of impairment

do not often require medication but do benefit from assistive

technology—especially in a pandemic where information and

communication technologies are increasingly important for

communicating with others.

listening and acting Overall, our findings document the experiences and con-

cerns of people with disabilities during the pandemic. We show

that COVID-19 has been deeply relevant to PWD and those with

whom they are connected. In some domains, PWD experienced

the pandemic differently from others. While seemingly everyone

has been affected by this crisis, those with impairments had their

home situations and their relationships impacted more. On the

other hand, PWD shared many of the same worries as the rest

of society. Areas where they stood out (e.g., food and medicine)

relate to the need for assistance and threats to resource access

that has been brought to the fore in the current crisis.

Although the United States has been at the forefront in

many efforts to make society more accessible for PWD (e.g., legal

protections through the Americans with Disabilities Act and the

Individuals with Disabilities Education Act), codified rights do not

necessarily ensure inclusion and support. Such policy gains are

subject to backlash and cuts in funding that may be especially

salient at the time of an unprecedented global pandemic. Support

that is offered needs to attend to the stated needs and concerns of

people with disabilities themselves. We live in a society where PWD

are openly mocked by top leaders. Thus, fears that hard-fought

victories could be fragile, especially during times of national crisis,

are understandable. Given our tumultuous global context, extra

vigilance should be taken to resist attempts to marginalize people

with disabilities, in rhetoric, in services, and in policy.

Kerry Dobransky is in the Sociology Department at James Madison University.

Eszter Hargittai is in the Communication and Media Research Department at

the University of Zurich. Dobransky studies health and health care, disability, and

information and communication technologies. Hargittai is editor of Research Exposed:

How Empirical Social Science Gets Done in the Digital Age (Columbia University

Press, 2020).

Reported worries since the coronavirus outbreak

20

40

60

80

100

Any disability No disability

Food or medications**

Finances Safety Future plans

Boredom* Internet

*p<.1 **p<.001

percent