Nearly 150 Disability Organizations Release Policy Demand Letter Ahead of Meeting with CDC Director

On Friday, January 7, Center for Disease Control (CDC) Director Dr. Rochelle Walensky, in an interview with Good Morning America, commented on the results of a research study. Director Walensky remarked that a disproportionate number of deaths due to COVID-19 in the study population occurred among those with four or more comorbidities, calling those patients “people who were unwell to begin with” and these results as “encouraging news”. The disability community, who represent those with four or more comorbidities who died in the study, responded in turn. The hashtag #MyDisabledLifeIsWorthy, started by writer and activist Imani Barbarin, was a top trend on Twitter over the weekend.
As a result of the controversy, representatives from numerous disability organizations requested a meeting with the CDC Director. On Friday, January 14, several community leaders met with CDC Director Walensky to express their frustration with both the comment and how the CDC’s pandemic response has harmed and often left out the disability community. The following organizations and individual advocates were represented: The American Association of People with Disabilities, The Arc of the United States, The Autistic Self Advocacy Network, Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund, Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress.
Senior Director for The Arc of United States Bethany Lilly said, “the COVID-19 pandemic has been an excruciating two years where people with disabilities have had to fight for every policy win. This meeting was a helpful first step in rebuilding the disability community’s trust in the CDC and we are hopeful this will lead to substantive policy actions going forward.”
During the meeting, Director Walensky apologized for what the CDC described as a “hurtful, yet unintentional, statement pertaining to COVID-19 deaths and comorbidities,” according to an article in Disability Scoop, which also stated that the disability community is now requesting a public apology.
Ahead of the meeting, advocates sent a letter to the CDC Director from nearly 150 disability-focused organizations from around the country, representing tens of millions of disabled Americans from every state and territory.

The letter, which can be read in full here, reads:

“The disability community’s faith in the government agencies responding to the pandemic has taken hit after hit with repeated policy choices that devalue disabled lives. For every step in the right direction, there have been steps backwards or actions delayed. It is necessary for the public health of our nation that the CDC and other agencies responding to the pandemic take immediate, concrete policy steps to rebuild that trust, protect disabled and high-risk people, and enact an equitable vision of pandemic recovery that centers on those communities most at risk and begins to shift long-standing systemic inequities.” 

To rebuild the disability community’s trust in the CDC, the letter details several important policy demands and outlines three key requests:

1) Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership;

2) Base isolation guidance in public health evidence and data with an understanding of the impacts on those most at risk; and

3) Center people with disabilities–and other communities disproportionately impacted by COVID-19–by ensuring that all CDC COVID-19 guidance is inclusive of the needs of people with disabilities.

Finally, the groups are requesting a public apology from Director Walensky to disabled, immunocompromised, and high-risk Americans, as well as an affirmation of the CDC’s commitment to ensuring their pandemic response sufficiently centers the needs of these communities. More than 30 million Americans live with 5 or more chronic conditions, according to the Rand Corporation

The representatives in this meeting take extremely seriously their responsibility to people with disabilities, who are feeling scared and forgotten as the United States enters its third year of the COVID-19 pandemic. Accordingly, written statements from the organizations will be shared following tomorrow’s meeting. A press call will also take place at 4:30pm ET, on Friday, January 14, roughly one hour after the meeting. If you are a member of the media and would like to register for the call, please email Jess Davidson, AAPD Communications Director, at

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