Disabled Americans Push to Improve on COVID-Era Policies

PJoe Biden employed Kim Knackstedt as a personal assistant in the early 2021. He wanted to ensure Americans with disabilities weren’t forgotten when the country returned from the COVID-19 epidemic. A year later, that seems to be precisely what has happened—and it’s unfortunate, Knackstedt says.

“What was considered ‘normal’ was actually not a great way to live, often,” says Knackstedt, who served as the first White House director of disability policy, before leaving the administration on March 11. “It wasn’t accessible. It actually didn’t provide all of the things that we needed to get even basic health care, and so many other things, like basic economic security.”

While states and municipalities reduce vaccine requirements and mandates for masking, businesses eliminate flexible work policies and federal funds run out for pandemic-response actions, millions of Americans with immunocompromised conditions or other chronic diseases that render them susceptible to COVID-19 are calling on policymakers. They aren’t calling for more lockdowns or never-ending masking, Knackstedt says. They want the government to permanently make some systemic changes that made everything, from housing to health insurance to employment, more affordable for all Americans in the aftermath of the pandemic.

The group also wants to see new systems built that make it easier for people to live in communities. The list includes improved ventilation, COVID treatment and testing, and flexible masking policies. They also want to see a range of economic proposals such as paid sick leave, affordable housing, and programs to assist people with disabilities. In other words, they want to adopt the changes of the post-pandemic era that enabled people with disabilities to participate more in all aspects of society.

The country’s largest segment is made up of people with disabilities and those suffering from other health conditions. A staggering 3% of Americans, which is approximately 7 million, are on immunosuppressants. Tens of millions more suffer from diseases that reduce immunity or medical conditions that increase the risk of contracting infectious disease. Every day, more Americans join their ranks: Research estimates that 10% to 30% of patients with COVID-19 will end up suffering from Long COVID. A small percentage of the population will require continued economic and medical assistance.

“The COVID-19 pandemic spurred the largest influx of new entrants to the disability community in this country in modern history. It has been a mass disabling event and the numbers are continuing to climb,” says Rebecca Vallas, a senior fellow at The Century Foundation (TCF), who leads the think tank’s disability economic justice team. “It is at a scale that policymakers absolutely cannot ignore.”

Knackstedt, Vallas and Vilissa, a disability advocate, have joined forces with many think tanks and advocacy organizations, such as the Century Foundation or the Ford Foundation to press lawmakers for better systems. The group’s goals include Social Security benefits as well food stamps and affordable housing. They also want to preserve some pandemic-era policies that were beneficial for all Americans.

“The question needs to be, how do we lay the groundwork for a better normal?” asks Anne Sosin, a healthy equity fellow at Dartmouth University. “How do we invest in the systems and policies and infrastructure we need to manage the pandemic over time?”

‘Dismissing the lives of people with disabilities’

In early 2020, disability advocates raised concerns about potential consequences of the pandemic. As they had grown accustomed to the economic hardships of the recession and the public health problems, COVID-19 became more serious. People with disabilities began to fear that COVID-19 could lead to the same fate as the polio epidemic of the 1920s: It would forever mark an entire generation.

Although there were warnings made by public health professionals, disability advocates and first Democratic leaders who stated they wanted to reverse the trend of the pandemic following Trump’s election, many Americans seem to not be concerned about possible consequences of contracting the coronavirus. Thompson, who says she’s seen both racism and ableism during the pandemic, said that lack of empathy can feel like it’s coming not just from other individuals, but from the government too.

These tensions came to a boil in January when CDC Director Dr. Rochelle Walensky, speaking about a study that showed very few vaccinated people died of COVID-19, told Good Morning America, “The overwhelming number of deaths, over 75%, occurred in people who had at least four comorbidities, so, really, these are people who were unwell to begin with.”

To many disability advocates, this was “another example of a governmental agency dismissing the lives of people with disabilities,” as Bethany Lilly of disability rights organization The Arc, said at the time. Walensky quickly apologized after the backlash and announced that CDC officials will begin to meet regularly with advocates for disability.

Since then, the Biden Administration took steps to safeguard disabled persons from the pandemic. This included a presidential memorandum directing federal agencies to create a national plan of action to deal with the imminent crisis of Long COVID.

But many are critical of the Administration’s pandemic response overall. While most public health experts say the Biden Administration did manage the early part of the COVID-19 vaccine rollout successfully, a large number of experts—including former Biden COVID advisers—have publicly criticized the federal response in recent months.

Pandemic fatigue is real, and politicians have often said they are trying to respond to Americans’ desires to go about their lives. But Kaiser Family Foundation polling shows that Black, Hispanic and low income Americans, as well as those with chronic health conditions—many of the groups disproportionately impacted by the pandemic—still support people wearing masks in some public settings. Disabled people still report lower vaccine rates, more hesitancy to get vaccinated but greater obstacles, while the rest of the population has higher vaccination rates. The availability of treatment is still limited. The lack of masking has led to parents of disabled children suing states and businesses, while some schools were banned from enforcing them.

“What kind of people are we, when we cut loose the most vulnerable members of our community as sort of expendable?” asks Gregg Gonsalves, an infectious disease expert at Yale’s School of Public Health. Gonsalves compared how the U.S. treats immunocompromised patients to the treatment of gay men during the AIDS epidemic. “In the AIDS epidemic, it took the president seven years to say the word, so it doesn’t surprise me that people who were considered disposable are indeed treated as disposable,” he says.

But in a pandemic, Gonsalves notes that thinking only about personal risk doesn’t work very well. “Public health is never about personal risk,” he says. This approach, he adds, “lands us in greater peril than where we were in the fall.”

Take a seat at a table

Knackstedt along with the other disability advocates have launched an initiative called the Disability Economic Justice Collaborative (April 21). This collaborative is meant to go beyond the disability community into the establishment policy making circle. The collaboration includes think tanks such as The Century Foundation and The Center for American Progress as well as over two dozen organizations from the progressive spectrum like the Center on Budget and Policy Priorities and National Partnership for Women and Families. Justice in Aging and Justice in Aging are all part of the collaborative, along with the Urban Institute and Food Research and Action Council and Data for Progress.

“People with disabilities have historically been viewed in a lot of ways as a ‘them’ instead of as part of the ‘us,’” Vallas says. “And so a lot of what this is really about is about saying, y’all, we were part of the ‘us.’”

Knackstedt says she was able to do some of this in her time on the White House’s Domestic Policy Council. In her 14 months there, she worked to implement Biden’s executive order on diversity, equity and inclusion in the federal workforce and helped get Long COVID declared a disability under the Americans with Disabilities Act, giving long-haulers federal civil rights protections. Her physical health was eventually affected by the demands of the job. “Across the entire government, whether it’s the Hill, whether it’s the Administration, there’s a lot more that can be done to make the work accessible,” Knackstedt says.

This type of meeting is something that disability advocates want to organize for many years. Rebecca Cokley (a former Obama Administration official and long-time advocate for disability rights) says it’s something they have been wanting to do since the beginning. “For decades, [disability groups] were told that the reason we couldn’t do stuff was because we didn’t have money,” says Cokley, who joined the Ford Foundation last year as the philanthropic giant’s first U.S. disability rights officer. Cokley now has $10 million in her annual budget, and she was able to contribute funds for this partnership.

Data for Progress has been able to generate new energy and set up a Disability Polling Project to survey persons with disabilities. This will help legislators see these people as an electoral constituency. It also plans to include additional disability-related questions to its surveys to all voters.

“Part of the power here comes from integrating disability as a lens through which we look at all policy,” says Matthew Cortland, a senior fellow at Data for Progress leading the polling project.

The advocates hope that having access to public opinion data from Democratic politicians will help them get the results they seek. The group has already made friends in Congress. Rep. Ayanna Pressley of Massachusetts has frequently spoken out about disability issues and says she realized the topic’s importance when she saw a disability advocate treated “as a second class citizen” during her time as a city councilor in Boston. “That was painfully familiar to me as a Black woman,” she tells TIME. “These were injustices happening in plain view, for which there was little spotlight, focus or outrage.” Now she frequently communicates with disability advocates, and recently introduced a bill with Sen. Tammy Duckworth of Illinois that aims to improve access to Long COVID treatment and clinics.

Senator Elizabeth Warren and other lawmakers have spoken out about the importance of disability during this pandemic. “All policy issues are disability issues, and our laws should reflect this reality. This pandemic has reinforced what I’ve argued all along: when leaders implement policy to support the most vulnerable in society you improve life for everyone,” Warren said in a statement.

The White House recently replaced Knackstedt with Day Al-Mohamed, another disability advocate who most recently worked at the Department of Labor’s Occupational Safety and Health Administration. Knackstedt believes Al-Mohamed’s ability to continue building on her foundation last year will allow them to do so.

Thompson is Black and a disabled Black woman who was trained as social workers. She hopes that the collaboration can aid policymakers in understanding how people with disabilities are affected by not only their disability, but also by race, gender, and sexuality.

“Diversifying the people who are able to be there is really critical so that we can have a more comprehensive, inclusive understanding of these policies,” she says. “Instead of policymakers or politicians talking at us, we’re at the table working with them.”

‘A wholesale paradigm shift’

COVID is a complex disease that advocates say could prove difficult to treat because of the number of victims. In the United States, more than 980,000 people died and thousands are still grieving. There were over 1 million cases for disability benefits pending with Social Security Administration at March. Even if people don’t enjoy thinking about these statistics, they are having a significant impact on the American psyche and the country’s economy. “My hope is that as we are continuing to beat the drum on long COVID,” says Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress, “it brings some attention to some programs that have been left to wither on the vine.”

The Century Foundation, Vallas believes that incorporating disability policy into all other areas is part of the key. She hopes to be able to change laws and policies if people with disabilities are included in all policy discussions regarding pandemic preparedness, housing, Social Security and equal wages. Disability advocates were making some progress before the pandemic.

Hillary Clinton dedicated an entire speech in 2016 to disability rights. All major Democratic presidential contenders released their first disability policies platforms in 2020. Vallas hopes to have disability considerations integrated into all economic policymaking by the government. By 2024, Vallas and his team hope that every presidential candidate from any political party will present a platform on disability. Eventually, they’d like to reduce poverty for disabled people across the country—but for now they want to use the pandemic-inspired momentum while they can.

“It must be a wake up call,” Vallas says. “This must also be a moment that our policymakers understand as calling out for a wholesale paradigm shift.”

Send an email to Abigail Abrams at abigail.abrams@time.com.