How to center disability in the tech response to COVID-19

Disabled women talk together

Across the United States, COVID-19 has had unequal impact on different communities. As numerous studies have shown, Black people, immigrants, and low-income people are more likely to contract the disease and more likely to suffer hospitalization and death when they do. Such disparate impacts also extend to the disabled community, which has similarly experienced far higher rates of hospitalization and mortality.

Advocates for social justice and civil rights have repeatedly called for the policy and technology sectors to effectively address COVID-19’s unequal impact on marginalized communities. Yet those advocates, as well as policymakers and technologists themselves, first need to understand the specific concerns that disabled people have. As a disabled person who is also queer, trans, and East Asian, I would argue that centering disability justice as a framework is necessary for achieving racial, gender, and economic justice, especially in light of COVID-19.

Nowhere is that framework more necessary than the technology industry. On the one hand, technology holds enormous promise for helping disabled people to cope with, and perhaps even thrive amid the pandemic, such as by enabling consistent access to meaningful social interaction. On the other, however, technology threatens to exacerbate long-standing structural problems, such as widespread medical discrimination resulting in denial of care. For disabled people, the stakes have never been higher, and this requires the tech policy community to make careful, well-designed proposals in collaboration with the most impacted communities. 

The unique COVID-19 threats for disabled people

Social justice and civil rights movements will remain incomplete and insufficient as long as they perpetuate ableist practices and ideas and are inaccessible to disabled people. Unfortunately, tech policy often fails to acknowledge, understand, or respond to issues impacting disabled people across different disability experiences, even though disabled people comprise one of the most at-risk groups.

Those with the highest chances of severe symptoms if they contract COVID-19 are people with chronic lung conditions and people with suppressed or compromised immune systems—by definition, disabled people. The people at greatest risk of post-recovery complications after surviving COVID-19 are likewise disabled people. Otherwise non-disabled people who are reporting significantly decreased lung capacity after surviving COVID-19 are now joining the disabled population. We also represent the vast majority of the population living in the congregate settings with the highest rates of transmission. That includes disability-specific locations like group homes, psychiatric hospitals, and nursing homes; and institutions where disabled people are extremely disproportionately overrepresented, like jails and prisons.

Tech policy proposals that do not center disabled people ultimately become dangerous for our continued health, safety, and freedom.

Rationing care for disabled people

Disabled advocates and community members are deeply concerned about a slew of COVID-19 policies, but among the most dangerous are practices relating to care rationing. Public health experts have cautioned us all to do our part in flattening the curve to decrease the strain on the medical system, but even with these efforts, failing health-care systems are having to ration health care, which is dangerous for disabled people. Unthinking technological approaches toward rationing may make this problem worse.

In the event of a shortage of equipment or personnel, many state and hospital policies often deprioritize people with certain disabilities to receive life-saving treatment. Unfortunately, these policies are not hypothetical; they have devastating real-world consequences, like a hospital’s choice to withhold COVID-19 treatment from Michael Hickson, a Black man with quadriplegia, because of a doctor’s belief that he had a low quality of life. Hickson died last month. These decisions on rationing care reveal what many disabled people already know from personal experience: Medical ableism is deadly and pervasive.

To predict the likelihood that patients will recover from COVID-19, some hospitals have adopted algorithmic modeling. For disabled people, this may accelerate practices that cut us off from care or decrease the likelihood that we will be seen as patients worth saving. Algorithmic modeling could be helpful by providing doctors and nurses with information to better serve and treat their patients, but adoption of algorithmic assessments to predict the speed of decline for patients with COVID-19 could also threaten the lives of disabled people already at risk of denial of care. Available tools may not make accurate or reliable predictions, but even if they do, researchers have already documented that doctors are more likely to make riskier decisions about patients with disabilities.

For disabled people who are also queer, trans, or people of color, the deployment of algorithmic modeling increases the risk of compounded medical discrimination. All marginalized communities have long histories and ongoing legacies of surviving involuntary medical experimentation, coercive treatment, invasive and irreversible procedures, and lower quality of care—often justified by harmful beliefs about the ability to feel pain and quality of life. These health care disparities are exacerbated for people who experience multiple forms of marginalization.

Contact tracing and surveillance can uniquely harm disabled people

Development of contact-tracing apps and apps to surveil students or employees’ physical proximity to each other threaten disabled people by increasing surveillance of an already hyper-surveilled and criminalized community. These kinds of apps lack the utility necessary for them to be an effective tool in responding to the pandemic, given the actual likelihood of transmission in different interpersonal interactions. As Ashkan Soltani, Ryan Calo, and Carl Bergstrom explained, such apps will lead to both over-identification (flagging too many false positives and creating the likelihood that people will ignore notifications) and under-identification (failing to adequately account for possible transmissions and exposures, even for people who are definitely infected). They introduce highly intrusive and easily abused monitoring and surveillance to create false reassurance that they would actually slow the spread.

Disabled people already have to give up our privacy just to access basic services, support, and accommodations. We have to deal with consistent, lingering beliefs about fraud and deceit that lead to implementation of policies like Electronic Visit Verification, which subjects disabled people receiving publicly funded support to increased scrutiny. But because ableist society is often resistant to expending resources on disabled people, we also risk increased discrimination, open hostility, and even hate when others find out that we’re disabled.

In a pandemic, this devaluation of disabled people’s lives has catastrophic consequences. When public health and elected officials say that “only” elderly and immunocompromised people are at serious risk, they’re saying that people with aging-related disabilities or disabilities that affect immune or respiratory systems are expendable. While everyone is at risk of privacy violations in ill-fated attempts to combat COVID-19, disabled people are afraid of how COVID-19 data could be weaponized to further deny or deprive us of care.

The benefits and harm of online work

For disabled people, the pandemic has created opportunities and challenges as schools, universities, and employers have instituted widespread remote working and learning. Schools and workplaces have denied disabled people’s accommodation requests for telework and remote learning for years. It only took a pandemic for them to realize they could have let us do so all along. Now that millions more people are working and studying virtually every day, more disabled people can participate in previously impossible education and work opportunities. Employers and schools are discovering nifty accessibility features, like captioning, and exploring both synchronous and asynchronous meeting and learning options.

But this increased reliance on technological stopgaps to aid physical distancing also hurts many disabled people in two important ways.

First, as of 2020, a whopping 98 percent of all web content fails to meet the Web Content Accessibility Guidelines, which is the international standard for making web content accessible to people with disabilities. That could mean that content is inaccessible to screen readers, refreshable Braillers, eye tracking, or other adapted technologies. It could also mean that content is inaccessible to people who rely on captioning, need to resize images and text, or have cognitive and language-based disabilities. This means that even basic public health information and news updates in the pandemic are inaccessible to large numbers of disabled people—let alone classes, work, unemployment assistance, social media, or games.

Secondly, disabled people are disproportionately less likely to have broadband access or devices capable of browsing and using (therefore inaccessible) web-based content. This divide affects Black, Native, and low-income disabled people even more sharply than others. Native people living on reservations—a community that, like other marginalized communities, experiences much higher rates of disability than the overall population—have been hit particularly hard by the digital divide. And of course, widespread adoption of physical distancing and virtual communications has completely left behind DeafBlind people who rely on tactile communication—even to the point that some agencies that serve DeafBlind people have effectively terminated services for DeafBlind community members.

Policymakers must listen to disabled people

Now more than ever, we need policymakers to understand that meaningful access and participation of disabled people is not optional. Information about programs designed to provide relief from the devastating economic impacts of COVID-19 must be accessible to disabled users. The design of these programs must take into account the social, environmental, and political factors that have put disabled people, especially multiply marginalized disabled people, in economically precarious positions for decades. Apps designed to track and slow the spread of COVID-19 should be developed and implemented carefully, and local governments should be cautious about deciding to implement new apps for any official purposes.

Disabled people, particularly disabled people of color and disabled queer and trans people, have survived medical experimentation, eugenics-based policies, and the combined effects of economic exploitation and deprivation. Understanding this context will help policymakers devise policies that are actually responsive to both the needs of the moment and the contemporary legacies of historical injustices.

Lydia X.Z. Brown is policy counsel for the Privacy and Data Project at the Center for Democracy & Technology. They focus on disability and algorithmic justice.