[music]

Melissa Harris-Perry: Welcome to The Takeaway. I'm Melissa Harris-Perry, and this is the sound of a dream coming true.

`

[applause]

Melissa Harris-Perry: On Saturday 24-year-old Mykayla Skinner won the Olympic silver medal on Vault. Skinner's win was utterly unexpected and ultimate on the 2016 Olympic team and a non-participant in this year's team competition, Skinner just missed earning a place in the individual apparatus competition for Vault, but after Simone Biles stepped aside, Skinner canceled her flight back to Utah, got herself back to the Olympic gym and won silver two days later. It's the kind of comeback story we all love, and her win is extraordinary for another reason. Just over six months ago, Mykayla Skinner was diagnosed with COVID-19.

Mykayla Skinner: I was sick for a whole two weeks, and then I was starting to feel better. Then after those two weeks, I thought I was getting better. Things were going good. I went into the gym three different times. Was super weak. It was really, really hard, and then on a Sunday, after that, I got really sick, went to the hospital, and found out I had pneumonia.

Melissa Harris-Perry: That Mykayla Skinner could go from a hospital bed to the Olympic medal stand in less than a year is undoubtedly a testament to her exceptional respiratory conditioning as an elite athlete. Maybe we can credit a bit of Olympic fairy just as well, but for many who can track COVID-19, the debilitating reality of living with COVID's lingering symptoms is a very different story. Chronic pain, lasting heart problems, powerful fatigue, thick brain fog.

These are just some of the long-term symptoms that persist for many COVID long-haulers months after the initial diagnosis of the illness. Of course, we don't know what the effects of the illness may be years or even decades from now for the millions who continue to struggle with COVID after effects. Last week, on the 31st anniversary of the Americans with Disabilities Act, the Biden administration released guidance explaining that long COVID can now be classified as a disability under the ADA.

Biden: These conditions can sometimes rise to the level of a disability. We're bringing agencies together to make sure Americans with long COVID who have a disability have access to the rights and resources that are due under the disability law.

Melissa Harris-Perry: Even as we celebrate Mykayla Skinner's tremendous athletic performance, we must face the reality that, for millions, simply making it through the day with the lasting effects of COVID feels like an Olympic feat. With me now, to talk more about the guidance on long COVID as a disability is Georgia Linders, a COVID long-hauler. Welcome, Georgia.

Georgia Linders: Thank you.

Melissa Harris-Perry: Eve Hill, a disability rights attorney at Brown Goldstein & Levy, and former Deputy Assistant Attorney General of the U.S. Department of Justice, Civil Rights Division. Welcome to the show, Eve.

Eve Hill: Thank you for having me.

Melissa Harris-Perry: Georgia, just so our audience understands, how long have you been sick?

Georgia Linders: I have been sick for about a year and a half, I got sick during the first wave in March 2020.

Melissa Harris-Perry: Talk us through a little bit of the arc of that illness, what it looked like at the beginning and what your experiences and symptoms are now?

Georgia Linders: Sure. What you were talking about before, about all of the people and even the Olympic girl, I feel like that could have been my story also because my experience was very similar. I got sick, March to April of 2020, I was really sick for like two or three weeks and then got better and then got worse and then got better, and it continued like that the rest of the year. My main symptoms were fever. I had a low fever every single day, and then every once in a while it would spike up to over a hundred, and then that's when it would really affect my mood.

During that time, there were times where I actually felt a lot better and I thought it was going to be over and done and then I'd then it would come back. I ended up finding support groups online and because doctors didn't really know anything, I couldn't get a test in the beginning. There were tears for who could get a test and who couldn't and I didn't qualify. The Health Department and the hospital both told me to just stay home and assume that I have it.

Melissa Harris-Perry: Georgia, thank you so much, and I'm going to come back to you in just a moment. Eve, can you tell us a little bit about this guidance that was issued by the White House last week and what it means for folks like Georgia.

Eve Hill: Sure. The departments of justice, health, and human services, education and labor, all got together to issue this guidance that says under the ADA title two and title three under Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act, long COVID can be a disability. This was important guidance because there've been a lot of questions about whether long COVID could be a disability.

Now, the guidance doesn't say COVID is always a disability, but it is a disability if it meets the definition under those laws, which is that the person has a physical or mental impairment that substantially impairs a major life activity, and long COVID can impair a major life activity in a lot of ways. The things Georgia has described, the things the Olympian has described, lung function, heart function, kidney function, all those can be major impairments, and the CDC has said that long COVID is an impairment. You just have to look at whether the person has a substantial limitation of a major life activity, and if they do, they're covered under the federal civil rights laws.

Melissa Harris-Perry: Eve, what does that mean to say they're covered under the federal civil rights laws? What protections does it offer?

Eve Hill: Well, it offers a variety of protections that can't be excluded from public accommodation which are most of the businesses that we deal with. You can't exclude a person with long COVID from recreation programs or restaurants and businesses, and also from state and local government, or federally funded activities, programs, and services like schools. Licensing programs, health care services, and so forth.

Also, it means that they can be entitled to reasonable accommodations or reasonable modifications. For example, the ability to sit while waiting in line, extra time on tests for a person with brain fog due to long COVID, or the ability to minimize walking distance. All those kinds of things are available because they can be covered under the ADA and the other laws.

Melissa Harris-Perry: Georgia, what are the major life activities that have been affected for you by your long COVID?

Georgia Linders: Well, when you guys are talking about that just now, I'm really, really going to try not to cry. [chuckles] This announcement and everything was really validating, but it's about a year or two short almost for me because I already actually lost my job. I had been working for 10 years at a company, and I was fighting through the times when I would feel better than worse.

When it was worse, I had those 20 different symptoms that I had, and this is one of my main symptoms. Like right now, my brain is slowing down. I have to pretty much do one thing at a time. It's hard for me to do multitasking, and since then, I have had neurocognitive testing and I do have a mild neurocognitive disorder, and so that's why. The issues that I have mainly are fatigue and it's delayed fatigue.

I could go to the grocery store today, but then tomorrow I'll feel horrible. I pretty much am at home almost all the time, I don't go anywhere, and then I can barely take a shower. Once a week I have a goal to take a shower and I have to use a shower chair, I have to sit down [unintelligible 00:08:47] the shower, and so it's been really difficult because I was really active before.

I was not in the Olympian, but I had lost a lot of weight and I was the healthiest I'd ever been. I worked full-time, I did wedding hair on the side part-time and I had flowers outside that I'd garden. I found ways of being active without working out. I could never do that, but I found ways to enjoy exercise, but I could tell right when I got sick and then the few months after [unintelligible 00:09:26] last summer, I couldn't do any of those things. I just pretty much had to sit on the couch all day.

Melissa Harris-Perry: Eve, it breaks my heart not only to hear Georgia talk about how dramatically her life has changed as a result of long COVID. Eve, it's also very concerning to me that she's saying it feels like this ADA protection is too late. What does this protection offer for long-haulers like Georgia, who may have already lost their jobs, lost so many of the activities that they loved and that gave meaning to their lives.

Eve Hill: Hopefully, it gives them hope of going on. I understand that things are terrible in the moment but as things get better, which we hope that they do, they will have protections as they return to the workplace, as they return to government service, as they return to participating in all the things that they enjoy in life and that are open to them in life. It is a problem that the guidance is late but the law has actually said this the whole time.

This is not a change in the law, the law has applied this whole time as long as people meet the definition but there are some difficulties that remain, some people with long COVID got it before testing as Georgia did, the testing wasn't available, so may have difficulty getting a diagnosis, that's still a barrier. We remind people that you don't have to have a specific causal diagnosis, it doesn't have to say it's long COVID, it just has to say, there's a neurological dysfunction, that their shortness of breath, that's a sufficient diagnosis to be covered under the ADA.

Melissa Harris-Perry: Maybe you're a graduate student, and you're going to need extra time on tests or maybe you're going back for job training, how do you access these protections?

Eve Hill: Most entities should have processes for requesting accommodations and so if you're returning to school, you go to your office of disability services and ask them for the accommodations you need. If you're going to a government agency, you go to them and ask them for who do I talk to about reasonable accommodations, it should be a fairly simple process of identifying your diagnosis, telling them what you need, and going through an interactive process with them to make sure that what you need can be done in the context of the program that you're acting in.

There are lots and lots of accommodations, almost anything can be an accommodation if it's necessary for the person to participate in the program. Things like a lot of people with long COVID suffer shortness of breath so asking for the ability to sit more breaks, reduced walk distances, all those are accommodations that people can ask for.

A lot of people with long COVID suffer what we call brain fog and accommodations for that include extra breaks, extended time, and memory aids that will help you do what you need to do to participate in the program. There are lots and lots of things that can be open to accommodate people with long COVID and don't feel constrained by the examples that I gave or the examples in the federal guidance, or even what you've heard from people in your support groups, you could get what you need.

Melissa Harris-Perry: Georgia, I think maybe you particularly got to me when you talked about gardening. I'm a backyard gardener and farmer, the idea of losing the stamina to do that I've really feel that loss but you've also become something else in this process. You've become a bit of an activist. Can you talk about that a little?

Georgia Linders: Sure. I started getting involved with the support groups in the, I think, the summer-fall of last year but I didn't actually start volunteering for things until after I had stopped working and that was November of last year. There's two things, I started making dolls and because it's all that I could do sitting down on the couch. There are a couple of organizations at that time when I stopped working, I was diagnosed with chronic fatigue syndrome and so that opened up a lot of resources and I became an advocate with actually a couple of different ones.

There's something called a long COVID Alliance, which is a whole bunch of nonprofits all getting together from the MECFS community and long COVID community. I participated in advocacy day this past April, so not last year, this year, April, where we talked to Congresspeople about being a long hauler, and that we're here and we need help. Even though I was going through this horrible illness, I took all the energy that was put into working and this is something that has been really fulfilling to me.

Melissa Harris-Perry: Eve, Can you talk about your work with the stop the wait coalition?

Eve Hill: Sure. One of the things that remains undecided is how long COVID will be treated for disability-related benefits like Social Security Disability Insurance. One of the things that I'm working on with the stop the weight coalition is eliminating the five-month wait period for Social Security Disability Insurance. People who develop disabilities and can no longer work, go on Social Security, Disability Insurance, and the government keeps the first five months of your benefits.

Even though we all pay into Social Security Disability through every paycheck, the first five months are free, basically, not for the person with a disability, but for the government and we're trying to get rid of that five-month wait period so people can get the benefits that they deserve from the beginning when they need the money, they can get the money to help deal with health care, home modifications, keeping their home, and so forth during this very difficult time.

Melissa Harris-Perry: I feel like that's one of those aspects of law and of our social safety net that unless you are actively accessing it, you just didn't even know about that five months.

Eve Hill: That's exactly right. Nobody knows until it happens to them and that's the worst time to both be denied those benefits and to find out that this work in the law exists.

Melissa Harris-Perry: Georgia, I'm wondering, for you as a long hauler, and particularly, as someone who got COVID before you could even get a test before we had strong clear guidance about masking and distancing. I'm wondering what message you want to send to others in the wake of these rising COVID numbers across the country?

Georgia Linders: That is a good question. Being a COVID long hauler, it's still a very small amount of the people that become as bad as I am because I'm applying for SSDI right now and in the process. A lot of people sometimes will just have a few symptoms, and they're not quite sure and then they end up getting better but there's a group of us that have been sick for like a year and a half, and we're still sick. Most people don't, it's like they say most people don't die, most people don't get as sick as I am but it could happen to anyone.

My life was completely different before I got sick versus after I got sick. Even though I couldn't get a test, I still knew what it was. I know that's been a big part of all that advocacy where a lot of people couldn't get tests. Then they're like, "Oh, my gosh," some of them they won't even let into the post-COVID clinics if they didn't have a positive test. That's been really tricky but they've really worked with the CDC advocacy groups aid and the White House about that fact so hopefully, it's like Social Security. They told me when I was applying, because I'm on Long Term Disability from my employer, even though I don't work there anymore.

I still was on short-term disability and then long-term because they offered it and I just had to prove that I couldn't work. It didn't matter how I got sick or why I got sick. It was just, hey, there's something wrong with my brain. [chuckles] It's the same thing with there was a meeting while the President talked about it and then we had a short meeting yesterday where they explained more of the benefits of what we're talking about right now and see, there I go, I lost my thought, again. My brain slows down and I forget what I'm talking about, like halfway through. I am, yes, I lost it.

Melissa Harris-Perry: It's okay, Georgia. What I want you to know for certain is that the strength of your intellect, of your kindness, of your advocacy, and also, the reality of your suffering is all coming through in this moment and we're so appreciative that you took the time to join us. Georgia Linders is a COVID long hauler, and Eve Hill is a Disability Rights Attorney at Brown Goldstein and Levy and former Deputy Assistant Attorney General of the US Department of Justice Civil Rights Division. Thank you both for joining us.

Eve Hill: Thank you.

Georgia Linders: Thank you.

Copyright © 2021 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.

New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.