LIKE MANY OTHER marginalized populations, the disability community often finds itself an outlier when it comes to decision-making but always at the center of who is suffering the most. Findings from across the country indicate that COVID-19 has been a massive problem for the disability community. An analysis of private health insurance claims found that people with developmental disabilities were three times more likely to die after contracting COVID compared to others, a rate which was the highest of the 15 major medical conditions measured. A separate multi-state COVID-19 analysis found that while only 1 percent of the overall population live in nursing homes and long-term care facilities, 40 percent of total pandemic-caused deaths occurred in these settings. In Illinois, data showed that half of residents in state-run developmental facilities had contracted COVID, prompting a call to the National Guard for assistance.

Here in Massachusetts, has the disability community also been disproportionately impacted by COVID? These findings from other states would suggest it has, but the sad truth is we just don’t know. We don’t know because statistics measuring the pandemic’s impact on the disability community are not being collected.

The Massachusetts Department of Health, like many other state public health agencies, does not track disability on its COVID data dashboard as it does for age, race and ethnicity, or sex. To be fair, collecting this data is a challenge as states are left to do this work alone with little federal help. Indeed, the Centers for Medicare & Medicaid Services admit they do not collect data on disabilities and instead push the responsibilities off to states.

But it is hard to know to what extent a problem exists if you cannot measure it. Agencies like DPH would be better served to factor disability into their measures of COVID-related outcomes moving forward. Without a firm understanding of the impact of COVID on the disability community, leaders are making difficult decisions in Massachusetts and across the country without a full appreciation of the pandemic’s impact on people with disabilities.

The primary downside of not capturing information about disability is in the prioritization planning for who can receive the COVID vaccine. People with any number of disabling conditions should have obviously been candidates for prioritization in the early stages of the vaccine rollout, but because so much of the decision-making is driven by data they got overlooked. The lack of data on the pandemic’s disproportionate impact on people with disabilities in Massachusetts means that they are not being treated with the same urgency as other hard-hit groups, who are equally deserving but for whom we have better data.

From my experience with a disability, the lack of focus on people with disabilities in our COVID response does not stem from opposition or even disinterest in these issues on the part of our political leaders or the general public. Rather the problem is usually due to a lack of awareness about the challenges that face America’s largest demographic minority, comprised of more than one out of every four adults in the US. This lack of awareness comes mainly from a lack of representation of people with the lived experience of having a disability at the tables where decisions are made.

A popular saying within the disability community comes from South African disability activists during the time of apartheid and states, “nothing about us, without us.” The lack of an adequate response to measuring and addressing the impact of COVID on the disability community is because society has not taken heed of this maxim. While we are moving haltingly towards an end to the pandemic, its impact will continue to be felt even once we are all vaccinated and can embrace our friends and families rather than remain distanced from them.  But, by ensuring that decisions about people with disabilities are made with our input and representation, we have a real opportunity to make sure that the impact of COVID as well as future crises do not continue to fall as disproportionately on the disability community.

Alex Gray is a candidate for an at-large seat on the Boston City Council. If elected, he would become Boston’s first blind city councilor.