A Need For Disability Data Justice

The COVID-19 pandemic has shown the tight link between data and equity. Data are critical to identifying disparities, promoting social mobility, and advancing health for our communities. But gaps in data can have the opposite effect. Without data, opportunities to address inequities and social justice are erased.

Although more than 27 percent of US adults have a disability, there remain only limited COVID-19 data for this community. The available data have come from people with disabilities living in congregate care settings, nursing homes, or are limited to people with intellectual and developmental disabilities.

While these data represent essential members of the disability community and have provided critical insight, there are important lessons to be learned from the limitations of this information. The Household Pulse Survey, a biweekly survey assessing the impact of the pandemic on US households, did not include standard questions about disability until April 2021, during the second year of the pandemic. Gaps in disability data within electronic health records have prevented tracking of COVID-19 testing, vaccination, and mortality among people with disabilities. These disability data gaps have removed opportunities for evidence-based policies and limited the reach of the pandemic response for people with disabilities.

The COVID-19 pandemic has forced us to take a hard look at public health data systems. Efforts are underway to reimagine public health infrastructures to support equity and justice. But too often people with disabilities are not included on teams leading this restructuring and remain at risk of being de-prioritized in public health data systems.

A “disability data justice” approach is urgently needed. Public health data systems and infrastructure must be built to collect disability data and use this information to combat ableism and support equity and social justice. Below are a set of six recommendations to reach this goal.

1. Disability Data Must Be A Core Dimension Of All Demographic Information

Disability, like race, ethnicity, and gender identity, is a social construct. Therefore, public health data must collect disability as a core demographic data element. There is precedent for this approach. In 2010, the Affordable Care Act required all national federal data systems to collect information on race, ethnicity, sex, primary language, and disability status. Since then, the Department of Health and Human Services has provided guidance on disability data collection, recommending using six questions already in place across many national surveys, including the American Community Survey.

2. The Collection Of Disability Data Should Be Comprehensive

Disability data collection should not be limited to disability-specific issues. Public health uses a wide swath of information and increasingly leverages linked data sets and big data resources. Therefore, disability information must be included across all data systems and settings, including health care, food access, housing, transportation, education, employment, voting, climate change, and artificial intelligence. Only with broad disability data collection can the root causes of ableism and inaccessibility be identified and addressed.

3. Public Health Must Also Have A Growth Mindset About Disability Data

While there will always be opportunities to improve disability data collection methodology, this should not prevent current use of disability information. Public health must recognize that the disability community, like all communities, will evolve, and data collection methods and strategies may need to be updated to reflect these changes. For example, long COVID, newly recognized as a disability, necessitates additional data collection to characterize and understand the impact of this syndrome.

4. Partnerships With The Disability Community Are Needed

Public health efforts that directly impact the disability community must be centered on the disability community. This means that the development, planning, and rollout of disability data collection is informed by and is in partnership with this community. This includes ensuring that data collection methods are accessible to people with disabilities. And it is equally important to understand that all public health issues are also disability issues. Partnerships with the disability community must be formed with health departments and agencies to ensure that the perspectives of people with disabilities are included in all levels of public health efforts.

5. Data Must Be Shared With And Accessible To The Disability Community

Too often, public health data and resulting information are not accessible to people with disabilities. Equitable access to public health information and data must be prioritized, including communication, data, and websites. The Department of Justice recently released guidance and is undertaking rulemaking about website accessibility, which applies to public health departments.

6. Diverse Public Health Professionals Are Needed, Including Leaders With Disabilities

Efforts to diversify public health often exclude people with disabilities. Disability is a critical dimension of diversity. But many public health professionals must first wrestle with their long-held views of disability, take time to learn about public health’s history of harm and oppression toward the disability community, and enact changes to tackle ableist practices in their work. Schools of public health need to include disability as part of their diversity, equity, and inclusion efforts. People with disabilities bring missing perspectives to public health, and the barriers that keep this group out of this field must be torn down.

Now is the time for a change. The COVID-19 pandemic has sparked a national conversation about the future of public health. This moment of critical reflection presents a perfect opportunity to imagine a public health system that is fully inclusive of the disability community. To achieve these goals, schools of public health must teach and value principles of universal design, accessibility, and disability justice as core tenets of public health practice. Public health departments and agencies must do the same and forge meaningful partnerships with the disability community.

Addressing disability inequities must be a top public health priority, especially as the COVID-19 pandemic is expected to increase the prevalence of disability worldwide. Better disability data are urgently needed to advance equity and justice for everyone in our communities.

Author’s Note

The author has served as a member of the Robert Wood Johnson Foundation advisory group on disability data, and she is a current member of Health Equity Work Group at the Centers for Disease Control and Prevention.

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