Video (YouTube) 

WASHINGTON – Today, in a House Financial Services Subcommittee hearing, Congresswoman Ayanna Pressley (MA-07) discussed the crisis of Long COVID as a disability justice issue and outlined how the status quo has relegated disabled Americans—including those with Long COVID—to a second-class standard of living. 

A full transcript of her question line at the hearing is available below and the full video is available here. 

Transcript: In Hearing, Rep. Pressley Highlights Long COVID Crisis as a Disability Justice Issue
House Financial Services Subcommittee on Diversity and Inclusion
May 24, 2022

REP. PRESSLEY: For too long, the status quo has really failed the disability community and subjected our disabled neighbors, really, to a second-class standard of living.

Today, we’ve certainly heard many compelling facts and figures which do underscore the complexities of navigating this fundamentally flawed system, particularly for our neighbors and our loved ones in the disability community.

But policy ultimately is about people. It’s not a document on a shelf, it is the lived reality in our communities. Policy dictates, quite literally, who lives, who dies, and who thrives.

So I want to talk about one of my constituents from Cambridge, who we will call Mr. James. And Mr. James, say he develops long COVID. Conservative estimates put that at a community of about 8 million right now. So he develops long COVID, like millions of others as a result of this ongoing pandemic. He experiences his symptoms like chronic fatigue syndrome, cognitive dysfunction, and then he begins to struggle at his current job.

Miss Thompson, how have individuals like Mr. James, with long COVID, struggled to remain in the workforce and what barriers do they face as a result of long-term symptoms? What might Mr. James be experiencing?

VILISSA THOMPSON: Thank you, Congresswoman Pressley. I want to start off by saying in July 2021, the Biden Administration released a guidance package that announced that Long COVID may be a disability under the ADA.

That’s under the ADA, it requires that employers make reasonable accommodations for disabled people. However, this standard has not been a smooth transition for those with Long COVID, because of course, haven’t or won’t make certain adjustments requested or because some individuals may not be able to continue their positions due to their illness.

Some of the accommodations that can be worked is allowing people to work from home, which offers flexibility around schedules, and adjusting workstyles and dress codes, which is easier for Long COVID haulers and be able to sit versus stand in case someone works in a shop, have an office in that room, a quiet area for rest, storage areas for medications, temporary shifts in responsibilities.

We have even seen the Office of Disability Employment release some helpful information for employers with Long COVID and their employers as to how to provide these accommodations to make the processes much smoother.

REP. PRESSLEY: Thank you. And so now let’s say Mr. James can no longer work and turns to our disability safety net in order to make ends meet by applying for SSI, Supplemental Security Income.

So Ms. Thompson, yes or no, would Mr. James be receiving enough from SSI to make ends meet in a district like mine or to live above the federal poverty line? Yes or No?

VILISSA THOMPSON: No.

REP. PRESSLEY: And would SSI allow Mr. James to have emergency savings, say, more than $2,000?

VILISSA THOMPSON: No, not with the current limit.

REP. PRESSLEY: So to be clear, Mr. James develops Long COVID, his symptoms render him unable to work. He accesses SSI but must now live below the poverty line due to asset caps that prohibit him from saving even a modest amount for emergencies, let alone to rent a safe and healthy home because then his SSI benefits would be penalized.

I agree with what Mr. Foley said earlier, people don’t need to change, the systems do.

And if Mr. James’s disability requires him to move to a wheelchair accessible home, Ms. Thompson, what are the challenges that Mr. James will face in trying to find an accessible home in today’s housing market, in say, a Cambridge in my district.

VILISSA THOMPSON: Well as a fellow wheelchair user, I understand this issue completely. While the supply of affordable housing, you know, that’s available for individual families eligible for the Housing Choice Voucher Program, affordable housing, the nation’s main affordable housing assistance program is really, really inadequate.

This is even worse for those of us due to how little affordable housing in the U.S. is accessible to disabled people, which has left us little recourse with affordability and accessibility to housing and it being out of reach. Disabled people make up roughly half of people in this country who are forced to turn to homeless shelters to keep a roof over their heads.

REP. PRESSLEY: So the system is fundamentally broken, and as you said earlier, Ms. Thompson we need to legislate in a way that’s intersectional, you know. And the system is not going to change until we recognize that disability rights are human rights, that every policy is a disability policy.

And it won’t change until we legislate the healing and dignity that the disability community deserves.

I want to request unanimous consent to submit into the record a report published today by the Center for American Progress titled, “Removing Obstacles for Disabled Workers Would Strengthen the US Labor Market,” and finally to those that are visually impaired, and on top of this, I am a Black woman, with a bald head, with a gray top and hoop earrings. Thank you. 

Rep. Pressley has been an outspoken advocate for people suffering from Long COVID and has called for disaggregated demographic data on COVID-19 to better address the pandemic’s disproportionate impact on communities of color. 

In April, she introduced the Targeting Resources for Equitable Access to Treatment for Long COVID (TREAT Long COVID) Act with Reps. Don Beyer (VA-08), Lisa Blunt Rochester (D-DE), and Senators Tammy Duckworth (D-IL), Tim Kaine (D-VA) and Edward J. Markey (D-MA), to increase access to medical care and treatment for communities and individuals struggling with Long COVID. 

In March, Rep. Pressley led 23 of her colleagues in urging House Speaker Nancy Pelosi and Senate Majority Leader Chuck Schumer to help ensure a just and equitable pandemic recovery by including robust, dedicated funding to support people struggling with Long COVID in a future coronavirus relief package.  

In January 2022, Rep. Pressley and Rep. Don Beyer (VA-08) sent a letter to the CDC urging it to publicly report findings on the prevalence of Long COVID, including disaggregated demographic data. Later that month, she held a virtual roundtable with healthcare providers, advocates, and patients on how to address the crisis of Long COVID. 

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