Many Long COVID Patients Identify as Disabled and Feelings Are Complicated

“A Tsunami of disability.” 

That’s how the ongoing influx of newly disabled people as a result of COVID-19 has been described, in this case by Claire Pomeroy for Scientific American. That increase, estimated recently to be north of one million people by The Center for American Progress, has caused significant discomfort in the disability community.

It's a sense of unease that could have lasting mental health consequences for all involved. 

Intra-community Divide Stark but Not New

Within disability circles there’s a consistent theme of a push and pull at the moment. A want to provide support to those with long COVID entering these spheres twinned with a frustration that the concerns of longtime disabled people are only now being taken seriously because of who happens to be affected and how widespread COVID-19 is. It’s a conflict deeply felt by disability justice advocate Liza Mamedov.

“It's heartbreaking to see a lot of my friends and family start to suffer a lot of the same issues that I've been dealing with for a very long time. At the same time, it's heartbreaking in the other way, in that for so much of my life I've been invalidated by those very same friends and family that are now dealing with disability themselves. As well as doctors who completely invalidated many of my conditions of psychological or not deserving of research funding.”

Clay Owlglass is another disabled person who feels put off by what they call the “assumption and entitlement” that long COVID patients sometimes show when it comes to “how [they think] medicine works.” They say that their frustration is also deeply rooted in a want to provide others a pathway to a better quality of life. 

“I want desperately to prevent people from living the life I have lived—one of endless starvation (I was previously allergic to 100% of food), exhaustion (elevated histamine makes sleep impossible) and isolation (I was allergic even to sounds and to wearing clothing so being around others was hard).”

Licensed psychiatrist Dr. Julian Lagoy, MD, says that these feelings of frustration can easily lead to depression and anxiety based on assumptions made about another person’s experiences with something as nuanced as disability. 

“So, people who have more severe disabilities [can] look at people with COVID disability and can think, ‘Oh, it's unfortunate they're getting the same accommodation yet, it's a lot harder for me. or it's so much harder for us and they just come in.’”

Ariel Simms, CEO, and president of RespectAbility, a disability-led non-profit, says that these intra-community feelings aren’t new, and mirror previous fractured relationships within different areas of the disability community as a whole—like between those with lifelong and acquired disabilities. For them, COVID appears to have just heightened those sensitivities. 

“I would say that, of course, we've spent many generations in a state, I think, of distrust, perhaps, and weariness when it comes to new folks who are coming into the community. And I think especially in this particular moment where we have so many more people coming in and coming in as a group than perhaps we might otherwise have.”

At the same time, Simms sees the assumptions being made by newly-disabled COVID survivors as a consequence of society’s typical view of disability. 

“I think certainly when they first come into this space, they're going to have the same assumptions that many of those outside of the disability community have, right? That disability is purely this medical conception, that those of us who are disabled want our disabilities to be fixed, or cured, or taken away. And that those of us who are living our lives are somehow overcoming or doing great things in spite of our disability instead of because of the disability.”

COVID’s Status as a Disability Contested

Throughout the pandemic, strands of the American government—like the Equal Employment Opportunity Commission—have been hesitant to fully endorse COVID-19 as a disability unto itself.

They have decided instead to focus on the symptoms of COVID as a disabling force. This distinction is something that Dr. Lagoy says is a barrier to mental health care because COVID in and of itself cannot be listed as a reason for disability supports.

He says that another complicating factor is that mental health practitioners, when it comes to disability, often see it as a biological reality rather than a wider identity and are conditioned to assess whether a person is “faking it” for financial gain before diving deeper into treatment. 

“There are biases, and, and we're human, we're not perfect. So, if someone wants disability [paperwork], if someone wants Adderall, if someone is a substance user, like we have these biases and and it does affect the way we care for people and that's been proven statistically.”

Lagoy, who has a hearing disability, says that the pandemic has shifted his and his colleague’s mindset towards disability as less of an individual issue and more of a collective concern. Meanwhile, his waiting list keeps getting longer as more and more patients explore their relationship to disability. 

“This pandemic has really affected a lot of people that never had any psychiatric illness before because it affected everybody. I'm getting a lot more new patients who have never seen a psychiatrist, and they're having mental illness. They're asking for disability supports or accommodation.”

Hope for Advocacy and Increased Care

Despite the mental health load of the current moment on the disability community, advocates feel like there is potential for improved care—and the mental health benefits that come with it—largely because of an increase in attention on symptoms of conditions that existed long before COVID. 

For Simms, that opportunity is stark, not only as a chance to bring disability issues into the broader societal consciousness but also to engage with the reality that the disability community does not have a singular viewpoint or voice.  

“I think sometimes there's a tendency to sort of view the disability community as one thing as if we're all the same, and we all want the same thing. So, I think this is another moment or an opportunity to bring awareness around disability, but also to bring awareness around the fact that we are an incredibly diverse community as well.”

Mamedov, like many politically active disabled people, feels the stakes are immeasurably high. But despite feelings of violent erasure, they’re also keen to remind those who identify with disability that there is, inherently, a collective aspect to community care amidst turmoil. 

“I think we're all in collective mourning, but there can also be disabled joy, about this moment of disability and shared consciousness that we're experiencing. And I would encourage all disabled people, whether they're new to chronic illness or have been disabled for some time, to connect with others and form a disabled militancy around how we want to live the rest of our lives and what we want for the people we love around us.”