I used to tell my students about all the advances in civil rights and equity that people with disabilities have made over the years.
Then the COVID-19 pandemic hit. Across the country, countless members of my community have been discharged from hospitals, denied life-saving treatment, forced to remain in unsafe communal living conditions, and denied safe access to food, transportation, personal protective equipment, testing, and even essential information on how to protect themselves.
All because of who they were.
I say “countless” because we have no idea how many people with disabilities have contracted COVID-19, been hospitalized or died. There is no systematic reporting of COVID-19 testing, infection, mortality, or results by disability status.
Almost everyone will experience a disability, especially as we age, even if only temporarily. People with disabilities make up 26% of the population, but we are invisible – and never more so than during a public health crisis when we are also extremely vulnerable.
Recently, I was a member of the Robert Wood Johnson Foundation’s National Commission to Transform Public Health Data Systems. Our job was to make recommendations to modernize the collection, sharing and use of public health data to advance health equity. In the commission, I have found that public health data is essential to ensure that the most neglected members of society – including not only people with disabilities, but also people of color, poor people and LGBQT people – receive fair treatment.
Several decades after racial and ethnic disparities became a serious and widespread public health problem, the country has finally begun to collect data that the health system can use to address these inequalities. But, as the commission noted, there is still much to be done.
Much less has been done to collect and understand data describing the experiences and health needs of people with disabilities. These experiences and needs are diverse, as people may have physical, sensory, intellectual or developmental disabilities, as well as mental health issues or other chronic conditions.
Without data, however, there is no way to measure and understand what happens to people with disabilities, and therefore no evidence to inform policies for this population. That’s why when the pandemic hit, people with disabilities in many states were subjected to harsh and discriminatory judgment based on what others perceived to be, without evidence, their chances of survival. Essentially, these states placed a lower value on the lives of people with disabilities, assuming that they were of lesser quality, destined to be shorter, and not worth as much as the lives of others.
As a result, many people with disabilities found themselves deprioritized by healthcare providers. Some were denied admission or treatment. Some patients who were admitted were not allowed to bring their personal ventilators; others feared that their devices would be confiscated and reallocated to other patients deemed “more worthy”.
Family members were not allowed to visit, which meant that many patients, especially those with intellectual and developmental disabilities, had no advocates when they needed them. Many died alone.
People with disabilities living in congregate living environments like group homes or nursing homes were at increased risk of infection, but many had no alternative. Meanwhile, people living in the communities struggled to meet their daily needs without putting themselves at risk. For example, in New Jersey, people with food stamp debit cards couldn’t initially use them online; it took several weeks for the state to resolve this issue.
People with disabilities who were black or Latin or poor likely experienced higher levels of discrimination. A Johns Hopkins University study found that “socio-demographically disadvantaged people with disabilities” – those who were black Asian, Latina, Native American, poor, under 18 and female – were “significantly overrepresented in counties with higher COVID-19. impact” compared to other disabled people.
As the commission observed, we need reliable and timely public health data to create a true public health narrative that advances equity and centers power in the community – in this case, the disability community . Just knowing, for example, how many people with disabilities live in each community could have helped public health officials and advocates plan for their home testing, health care, food delivery and other needs. .
As a society, we were unprepared for this pandemic – and it won’t be the last public health crisis we face. Public health data has never been more important in what we do moving forward. We need to do a better job of making the invisible visible, or we’ll be back.
Javier Robles is a professor at Rutgers University and director of the Center for Disability Sports, Health and Wellness. He served as commissioner of the Robert Wood Johnson Foundation’s National Commission to Transform Public Health Data Systems and is currently chair of the NJ Disability Action Committee and vice chair of the Latino Action Network. Follow him on Twitter @thisabled