Summary
Atinuki “Tinu” Abayomi-Paul was “so funny … and so clever” and “wonderful at supporting disabled people in a beautiful and authentic way.” Several of those who loved and cared for Tinu reflect on her legacy and life in this episode of Still Here.
Before the segment of the episode dedicated to honoring Tinu, co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. And they share a brief hopeful update about beginning analysis that could help lead to repurposed drugs as treatment for Long COVID.
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Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.
Mentioned in this episode (in order of appearance):
- The Sick Times: National COVID-19 trends, October 8
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- The Sick Times: Research updates, October 8
- CUREID: Long COVID survey
- The Sick Times: Long Covid surveys from a FDA/NIH initiative ask which drugs help alleviate symptoms
- The Sick Times: Live blog: Following the RECOVER-Treating Long COVID kickoff event
- The Sick Times: “A good step”: Long COVID advocates and researchers respond to the RECOVER-Treating Long COVID meeting
- The Sick Times: Still Here, October 4: Links and transcript
- The Sick Times: Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52
- Creaky Joints: Testing COVID-Positive: My Experience as a Black, Disabled, Immunocompromised Woman
- GoFundMe: Honoring Tinu’s Legacy With Compassionate Support
Additional audio in this episode:
- Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece)
- Pixabay: Thunder and the beginning of rainfall
- Rooted in Rights: Disabled, Not Disposable – Tinu
- National Disability Rights Network: Tinu Abayomi-Paul
Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis.
Transcript
Intro (0:00)
[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]
James Salanga: This is Still Here, a podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times.
[Instrumental ends]
James: I’m James Salanga, and I’m Still Here’s producer.
Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.
Betsy: But here at The Sick Times, we’re not. That’s why we’ve been chronicling the impacts of the Long COVID crisis.
Miles: Disabled people are still here. So is COVID.
Betsy: So we’re bringing you the latest Long COVID news and commentary each week …
Miles: Without pandemic denial, minimizing, or gaslighting.
James: This podcast is typically an abridged version of our newsletter. But today’s episode will be a little different from the format you can typically expect from us. First, we’ll talk about the latest COVID levels in the U.S. and share some research updates.
Miles: This week in research, we have a milestone. The federal initiative CURE-ID, which comes from the Food and Drug Administration, reached 500 reports of Long COVID treatment experiences and will begin preliminary analysis. More on what that means soon.
James: And the rest of our episode will uplift the voices of those grieving Atinuki “Tinu” Abayomi-Paul … a writer, disability justice advocate and person with Long COVID beloved by many in Long COVID and disability communities.
Before that, I’ll hand it over to Betsy for a quick recap of this week’s COVID levels.
[Sound of thunderclap and light rain]
COVID-19 forecast (1:34)
Betsy: Yeah, so COVID levels in the United States have been going down for a few weeks now.
And that pattern has continued this past week. We’re really seeing declines across all regions.
And that is consistent across all of the wastewater data providers that I’ve been looking at. So Northeast, South, West Coast, Midwest, all seeing declines.
Of course, it’s important to remember that wastewater numbers are a proxy for COVID cases. They’re not a perfect measurement. So it’s tough to say exactly how many people are sick with COVID in a given location or at a given time from these data.
But it does give us a very good indicator of what direction and sort of what magnitude cases are happening. And the CDC actually has a office within it that does modeling work for infectious diseases, including COVID — [it] and the flu are the two main ones they’re focused on.
And in their most recent update where they provide estimates of whether COVID spread is increasing or decreasing in every state, they actually found that COVID spread is, as they put it, declining or likely declining in 45 states. And the other states, it is either they don’t have enough data to estimate it or it’s stable.
So that’s pretty good. Usually there’s at least a few states where it’s increasing.
Of course, we will likely only get a few weeks of this before everybody anticipates a winter surge, given changing variants, behaviors with people traveling for the holidays or spending more time indoors as the weather gets colder, all of that kind of thing.
James: Yeah. You can find out more about the way we develop our COVID forecast and trends on our website. We have a research update.
[Miles’ voice echoes the word “Research” accompanied with a horn sound excerpted from the theme song]
Research (3:23)
Miles: Yeah, so as I was saying earlier, CURE ID, it’s run by the Food and Drug Administration. It’s basically a long survey that is trying to suss out viable existing treatment options for people with Long COVID. It does this for other diseases as well, but it has a specific Long COVID arm.
They reached a milestone of 500 experiences with Long COVID, which is great. So they’re going to now start an analysis — they’ll go through the data and see if there’s any common trends.
And hopefully it’ll put together some options that will likely give people some relief. These obviously aren’t going to be extensive cures, these are things that are already available, but they will tell us potentially more about the pathophysiology of Long COVID and give us an idea of what people are responding to.
CURE ID worked with patient groups to develop the survey for people with Long COVID. CURE ID doesn’t have the resources to run clinical trials themselves, but will share the data when it compiles [it] with the FDA and other NIH officials.
Some patients have found it difficult to navigate, [since] it’s a longer survey. So there is a shorter option now that is making it a little bit more accessible and easy to share your results.
So, uh, people with Long COVID, if you have the spoons, this is a good way to share some things that have helped you. Even if they’re just small things, you know, those can be a great help as we sort of dig through and find out more about Long COVID.
Betsy: Yeah, I think they initially — initially, they said 1,000 was the number of reports they needed before they could start doing analysis.
But the level of detail that people have been sharing as they fill out the survey has been so extensive and comprehensive that they actually decided they could go ahead with 500 [reports] and start doing analysis.
So that was pretty cool to see, I think. Though, of course, they’re still saying, you know, as many, you know, anyone who can share who has the spoons to fill this out, it’s appreciated.
I would also say just having followed this for the last few months since I wrote a story about it in the spring, the CURE ID program has been pretty responsive to feedback from patients.
Like, as Miles mentioned, it’s pretty hard to fill out. The online form is not particularly intuitive.
I poked around with it — not to submit my own data because I do not have Long COVID — but just to kind of find out how it works. And it is really, it’s a little tricky.
So they, in response to the challenges people are having, there are now some accessibility options you can request. So if you reach out to the CURE ID team, you can set up a phone call with one of their team members where they will essentially talk to you and then fill out the survey on your behalf.
And I believe you can also do that through emails or other text kind of communication. So that’s definitely something folks should look into if they’re interested or if it would be helpful for them. I’ve also found their team is very responsive on Twitter.
So they really are, you know, paying attention and trying to improve it and iterate it over time to make it easier for people to share their data.
And hopefully this will point to some clinical trials of repurposed drugs and/or as Miles said, more looking into the underlying biology of Long COVID.
James: In terms of clinical trials, it was a big topic of discussion at the RECOVER-Treating Long COVID meeting two weeks ago. So if you want to hear more about that, we do have coverage up on our website, and we also have our previous podcast episode — [it] was also about that.
After a quick musical break, we will talk about and honor Tinu.
[instrumental portion of theme song plays]
Honoring Tinu (7:38)
The SIck Times: Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52
James: Atinuki Abayomi-Paul, known as Tinu, was a prominent writer and disability justice advocate, who died on September 26 at home in Texas. She was 52.
I wanted to let Tinu a chance to introduce herself in her own words. The clip you’re about to hear is from an interview she did with Rooted in Rights in 2020.
[Tinu: I’m Tinu Abayomi-Paul. I live in Arlington, Texas. I am the founder of Everywhere Accessible.
The idea that I like to talk about a lot because it’s something that’s accessible to people, that they have heard a lot, is this idea of a “productive member of society.”
So I think that’s one of the examples of medical ableism that’s widespread, and what that evolves into now [in the pandemic] is people saying, you know, it starts out with, well, only the disabled and only the elderly are going to have problems with this virus.
Hi, that’s me, [laughs] okay? … My life is priceless.
I shouldn’t be called upon to sacrifice my life when we have the resources to save as many people as we can.]
Miles: As soon as I heard the news — I heard it on Sunday, the 29th — I just started seeing so many people in the Long COVID and greater disability community honoring Tinu through just beautiful words through tweets, through posts, making mur— a beautiful mural of her.
So I wanted to start just to kind of record this, make sure that something was written in a timely manner. So I started sort of just compiling different things that people had said.
James: I mean, I’m really glad that we were able to publish this story about Tinu and to archive what folks were — how folks were honoring her. Here are some of her community members and friends:
Brooke Crume, or ZenMeow on social media…
[Brooke: She was so funny, and if there’s one thing I would love for people to know about Tinu, it’s that she was so clever.]
James: Jermaine Greaves, founder of Black Disabled Lives Matter…
[Jermaine: I believe that she was wonderful at supporting disabled people in a beautiful and authentic way.]
James: And Claudia Alick, producer of Calling Up Justice, a disability and racial justice transmedia practice…
[Claudia: We built so much access intimacy together, and also across our practices. Sometimes it was like we lived in the same digital neighborhood, and I would say something cooperative on their Twitter thread, or they would repost my Twitter thread.]
Miles: I remember reading an essay that she wrote for Creaky Joints in 2022.
The quote that really stuck out to me was, “I hope my story humanizes the experience of having COVID for people. Those of us at high risk aren’t abstract people you’ve never met. They’re people you know and love and might die because you don’t wear a mask.”
Along with speaking about disability, Long COVID, other chronic conditions that she was living with, one of the things that I noticed a lot of people speaking about was just sort of how she broke down a lot of the stigma around being immune-compromised and really talked about it.
James: Here’s Tinu in an National Disability Rights Network interview again, talking about a 2022 hospitalization.
[Tinu: People are not getting proper care for COVID in the hospital and it is more difficult when they look like me.
People ask me what it feels like, what does Long COVID feel like?
It feels like — I used to read these books when I was little, some of them romance novels, you know, about people in the Victorian era or, you know, rich people in Europe or whatever — it was stuff that my mom read, and they were leftover books.
And every now and then I would read about a woman who had malaise and for some reason I just pictured this woman lounging somewhere, not happy but relaxed somewhere, resting, perpetually resting because she had malaise and everybody understood, well, “Lady Beth has malaise so you simply cannot bother her.”
Only to grow up as an adult and have malaise myself and I’ll tell you it’s no picnic.]
James: She really wanted to draw attention to the disparities in treatment that happen for Black people of marginalized genders, especially, and the impact that, you know, class and money has on your access to healthcare.
[Tinu: So when people are fundraising for their healthcare, it’s because they’ve already done all the things that society would have you believe will save you if you get sick. And it’s not enough.]
James: Tinu really believed in solidarity with the most marginalized among the disability and Long COVID communities. Jermaine Greaves says …
[Jermaine: She was a strong supporter of Black Disabled Lives Matter when it started. … She will be greatly missed because she stood for community, mutual aid, and the peace of community.]
James: And, you know, she also worked tirelessly to share her experiences and even while managing, you know, symptom flares and a relapse with her cancer, she was always kind of working or she was always working to boost others’ mutual aid.
I think I remember probably the first few times that Tinu was on my timeline, it was her, you know, boosting other folks’ mutual aid … something also noticed by her friends, like Brooke Crume.
[Brooke: If you have Googled her, if you looked at her social media, then you know that when she had $100, 20 of it was going to go to somebody in the community so that they could eat that day.
Even when she was having a really hard time affording her cancer treatment, she always made sure that her community was taken care of the best that she could.]
Miles: To me, one quote that stuck out was from Sarah Renee, she stated that Tinu advocated with spoons she didn’t have not just for herself, but for the entire community. She was always looking out for other people as she went through so, so much herself.
James: Her advocacy was just one of many ways she aimed to create access for disabled people… She founded Everywhere Accessible in 2019, right before the pandemic hit and was working on several different initiatives to increase access everywhere.
One of Everywhere Accessible’s partnerships was with Calling Up Justice. Claudia Alick describes…
[Claudia: One of our projects ended up creating Why Mask?, which is now an international program that encourages people to embrace masking for each other’s safety.]
James: A part — a big part of her advocacy was, you know, as you mentioned before, [Miles], ensuring that the message got out there that people who are immunocompromised, people living with Long COVID, they’re not abstract people, and that, you know, there is real material harm associated with not masking.
Um, while, you know, her cause of death wasn’t stated, she did write on August 3 that “people not masking is literally killing me. If I do die, this is what killed me — people not masking or believing Long COVID lowers your immunity.”
And it’s really sad and frustrating that, you know, there continues to be this, I don’t know, that there continues to just be — a lack of empathy, a lack of understanding of how, how, like, materially helpful it is to put on a mask to, you know, protect people.
How many more people who are loved have to die in order for people to take it [COVID and Long COVID] seriously?
Betsy: We know, obviously, in Tinu’s case, as you said, the cause of death is not something that has been publicly shared, but we know people have died from and with Long COVID. And I think there is a real need for research and for, like, public health institutions to recognize this and to take it seriously.
The CDC has counted around 5,000 deaths with Long COVID, but everybody knows that is a really, really big undercount because it is just not being tracked at the level it should be tracked. Like you said, James, it shouldn’t have to add up for us to take it seriously, but I think there also is a lack of recognition of the scope of the problem.
James: Still, disabled people including Tinu have been sounding the alarm for public health institutions for years, and practicing community care while they’re doing it. Tinu’s interview with Rooted in Rights was four years ago, and in it, she says …
[Tinu: We need better care because it’s not just the physical toll on the body, it’s not just the emotional toll on the mind, it’s not the financial toll on the individual, even. It’s the fact that this is going wide, quietly. Soon my problem is going to be everyone’s problem.]
James: Those who loved Tinu say her legacy includes the writing she gave the world, like Claudia Alick.
[Claudia: When I found out Tinu had passed, I read their last blog post to an audience in one of our regular live streams, and was comforted by the idea that even in death, Tinu continues to inspire all of us across space and time. She will be missed.]
James: And also the way she moved through life. Here’s Cyborg Jillian Weise:
[Cy: Tinu did not care if I was under pseudonym or if I was under my actual name, Cyborg Jillian Weise. Tinu treated me the same with equality, kindness, honor.
And Tinu showed up for me over and over and over again. And when Tinu was struggling, Tinu still showed up for me. It’s one of the biggest things that Tinu taught me, how to show up for other people.]
James: To honor Tinu — and the disabled rage many feel at a death that shouldn’t have happened — her friend Brooke Crume has a call to action:
[Brooke: And so I do ask if you hear this podcast and if you care about Tinu, try to lean into your community, try to protect yourself and high-risk disabled people, try to wear a mask when you’re in a really congested area, when you’re in an airport, when you’re in a doctor’s office, anything you can do.
Because it wasn’t fair that Tinu got a secondary lung infection.
It wasn’t fair that her body couldn’t fight cancer and all of these things at once.
And she deserved more time, and she had so many things that she wanted to do.]
James: Tinu’s family and friends are currently fundraising for her funeral, medical expenses, and other costs. And we have more about where you can find that link on our website at thesicktimes.org.
Miles: And there’s also a virtual memorial this weekend. There’s a registration link that was out this week, but it may have closed before the weekend. [Editor’s transcript note: The registration link is closed at the time of this podcast’s release.]
Outro (19:00)
[Instrumental theme song excerpt plays underneath the rest of the podcast]
James: That’s all we have for you this week. Thank you to everyone who shared their memories of Tinu.
This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.
Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.
Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.
Thanks for listening.
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