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The Biden administration took steps to mitigate anger among people with disabilities about its response to the disability community this week when Centers for Disease Control and Prevention Director Rochelle Walensky met with rights activists Friday.
People with disabilities had been frustrated with the Biden administration’s rollout of the vaccine and its emphasis on keeping schools open. But the anger reached a zenith last week when in an interview with Good Morning America, Dr Walensky cited a study that showed that severe disease among vaccinated people occurred in a small number of people and said “the overwhelming number of deaths, over 75 per cent, occurred in people who had at least four, so really these were people who were unwell to begin with.”
“It’s really a gut punch, to see the CDC director speak about our lives like this,” Tory Cross, a senior policy adviser at Be a Hero, told The Independent this week. “But wouldn’t have landed with people if it didn’t reflect the reality that this is how the CDC has really decided to treat us, the CDC has so much decided to let us die instead of being part of utilizing the full power of the federal government to protect not only disabled and chronically ill people and people with comorbidities, but to protect everyone.”
In response, many people with disabilities began tweeting in response, using the hashtag #MyDisabledLifeIsWorthy, coined by activist Imani Barbarin. Ms Barbarin said she was also concerned about how medical professionals have had to go back to work after five days and said that it was not just a matter of the CDC’s response but the administration as a whole.
“Because, as they’re not shutting down the economy, as they’re not shutting down schools and business and things like that, they’re increasing the risk of people becoming more and more disabled,” Ms Barbarin told The Independent. “That means our services were already at the boiling point. We need to increase our ability to care for our disability community if we’re going to create a disability community.”
Much of the frustration at the administration is rooted in the fact that in the 2020 Democratic presidential primary, Joe Biden did not release a comprehensive disability policy while his competitors did and when he released his policy, it was long after the primary ended.
“He was not my first choice in the primary but he was someone I was strongly supportive of as soon as he was our nominee,” Jessica Benham, a state legislator from Pittsburgh who is the first openly autistic state legislator from the commonwealth, said.
“I think part of what I was concerned about was it did take his campaign longer than some of the other campaigns to come up a platform that really centred disability. But he ultimately did and so I was absolutely happy to back him and to be a delegate.”
But Ms Benham said that she has been deeply disappointed in Mr Biden’s handling of the pandemic and said she expected that type of messaging from the Trump administration.
“I don’t even want to say it’s borderline eugenics because it is eugenics,” Ms Benham said on Sunday. “So to have someone who promised our community that he would stand by us, that he would protect us, that he would execute and create a pandemic response that protected the most high-risk and most marginalized among us, to have that president, who made up on those promises go back on them is what I think so disappointing to me.”
On Friday, Dr Walensky met with a consortium of disability leaders and issued a formal apology.
“We always are hopeful that the CDC and the administration will take our demands seriously,” Mia Ives-Rublee, director of the Center for American Progress’s Disability Justice Initiative, said on a press call on Friday. Bethany Lilly, director of income policy for the Arc of the United States, said the goal of the meeting was to hold the CDC to account while also establishing a working relationship with the policy development.
“And we wanted to provide them with a really detailed discussion of what the policy needs we have as a community are,” she said.
Elena Hung, who co-founded the organisation Little Lobbyists that advocates for medically complex children, said the advocates explained why the comments were harmful.
“We felt that this framing was really important because we wanted the director to understand what her words and her actions have on the lives of disabled and chronically ill people,” she said. “The director did offer an apology at the start about how hurtful her comments were and we acknowledged it and we asked for a public apology from her to the larger disability community beyond those of us who were on that call.”
Maria Town, the president and chief executive of the American Association of People with Disabilities, said that the director was present for the entirety of the 45-minute discussion. Matt Cortland, a senior fellow for Data for Progress, specifically discussed the need for better guidance on masking, noting how many people still use cloth masks, even as they know N95 masks provide better protection.
“Americans know that they need better protection but they need technical guidance because employees base corporate policies for employees based on CDC guidance,” Mr Cortland said.
Ms Hung said along with the public apology, there needed to be actual change to policies, a sentiment that was echoed throughout the press call.
“This is a very first step towards addressing the harms that her comments and the CDC’s policies have done to the disability community,” she said. “The only way to rebuild this trust is taking substantive steps including making a public apology to the community, we’re hoping to see this as soon as possible, establishing a working relationship between the CDC and the disability community, leading to the CDC taking concrete action steps to addressing and implement the detailed policy recommendations we have already made and taking the necessary urgency and aggressiveness that will save so many lives.”
Ms Ives-Rublee said activists hoped the CDC would schedule another meeting to address some of the conversations.
At the same time, the activists said they hoped to set up meetings with other officials in the federal government such as Dr Anthony Fauci, White House Chief of Staff Ron Klain and Health and Human Services Secretary Xavier Becerra.
“We deserve to live,” Jamila Headley, co-executive director at Be a Hero, said Friday. “We deserve to thrive. We want to survive this pandemic and we want a CDC and CDC director who will fight for us.”