Earlier this month, a top U.S. health official came under fierce criticism following comments that seemed to refer to deaths from COVID-19 among people with comorbidities as “encouraging news.” The edited video was misleading—CDC Director Rochelle Walensky’s comments were taken out of context—but criticism from disability advocates was swift and justified in the context of perpetual undervaluing of the lives of persons with disabilities throughout the pandemic.

We’ve seen this again and again all over the world. Despite evidence that persons with disabilities’ health, wellbeing, employment, and education are disproportionately affected by COVID-19, they’ve been deprioritized in healthcare settings, vaccine access, support service provision, and data collection.

“Before COVID, people with disabilities were struggling. Now with COVID, this is worse. Those I have tried to talk to see this as the end of their lives,” a man with physical disabilities in Kenya told Sightsavers.

Nearly six out of every 10 people who died from COVID-19 in the UK in 2020 had a disability, according to data from February 2021. The UK’s Office of National Statistics is one of the few to publish COVID-19 data disaggregated by disability status (and is expected to update these statistics later this week). Two years on from the beginning of the pandemic, the lack of national datasets disaggregated by disability is appalling, especially for high-income countries which possess the capacity, tools, and resources to collect this information.

As one study explained, “this paucity of data on COVID-19 trends among [persons with intellectual and developmental disabilities] further exposes the reality that there is no adequate surveillance structure in place to monitor COVID-19, or other public health outcomes, among [persons with disabilities].”

We need more disability-inclusive data systems overall and—urgently now—better data on how COVID-19 impacts persons with disabilities. Ultimately, the lack of data is about choices and priorities. We must ask why decision makers regularly ignore existing data and calls from advocates and organizations of persons with disabilities for more equitable policies. “There is no excuse not to have data on persons with disabilities or to include [organizations of persons with disabilities] in data collection and interpretation efforts,” as advocates explain. And, while technical and resource challenges have hindered real-time data collection during the pandemic, agencies have also developed robust tools in response.'

Throughout the pandemic, organizations of persons with disabilities (OPDs) have been at the forefront in providing direct support to persons with disabilities, advocating for more inclusive responses, and generating much-needed data. Local and global efforts, such as those of the International Disability Alliance and the COVID-19 Disability Rights Monitor, provide critical evidence of the broad and deep impacts of COVID-19 and the resilience of persons with disabilities and the organizations representing them.

There are lots of examples of collaboration between governments and OPDs that have provided services to persons with disabilities during COVID-19. Such models should extend to data collection, too. It’s vital that public agencies generate disaggregated COVID-19 data and also that policy makers make better use of existing data and insights, especially from civil society. Governments must engage organizations of persons with disabilities to shape what data is collected and how it’s generated, analyzed, and used. The COVID-19 Disability Rights Monitor report emphasizes: “We must guard against disempowering notions that persons with disabilities be treated merely as recipients of aid. A sustainable response is possible where leaders with disabilities are acknowledged and become genuine partners in solving problems.”

The Global Disability Summit (GDS) in two weeks offers the opportunity for governments to make clear commitments to advance disability inclusive data as part of larger systemic plans to realize the rights of persons with disabilities. Join the Inclusive Data Charter at a GDS side-event on Wednesday, February 16, to continue this conversation.