What Does Disability Justice During a Pandemic Look Like?

This interview is the last of a three-part series about the pandemic’s impact on disabled and chronically ill people. Read our first interview with Tinu Abayomi-Paul and our second interview with Britt Lynnae here.

Ever find yourself aimlessly scrolling through TikTok? Then you’ve likely come across the work of Imani Barbarin, a disability advocate and inclusion activist in Philadelphia whose videos have amassed nearly 25 million likes.

On TikTok and Twitter, Barbarin educates viewers about disability and incisively criticizes ableist rhetoric, like a comment by CDC director Rochelle Walensky, who said she was “encouraged” that most vaccinated people who had died from COVID “had at least four comorbidities, so really these are people who were unwell to begin with.”

Over Zoom, Barbarin talked about how the pandemic has impacted her life and work. “Before the pandemic, disability was seen as, ‘That's their issue. This will never affect me,’” Barbarin told me. “Anybody is capable of having a disability or being impacted by disability. Just now it's right in front of their faces.”

This interview has been edited for length and clarity.

What were your concerns at the beginning of the pandemic?

My concerns began with the medical rationing guidelines: who would and would not get care if hospitals were at capacity. Disabled people were at the end of that list.

Looking at how COVID spread in Italy, people were like, “This mostly impacts disabled and elderly people.” But I knew that Americans do not care about disabled people. Once you’ve told them that only disabled and elderly people die, you’ve shot yourself in the foot. On top of that, they released data saying it was primarily Black people and people of color who were being impacted. That's when the tide turned. Americans were like, “I don't wanna wear a mask anymore.”

I panicked about going anywhere, and not just because of medical rationing guidelines, but I'm a Black woman, and I didn't think I would get equitable care in a crisis.

Because of the stress of the pandemic, I was up every night for like the first couple months. I was physically ill all the time. I have a very deep brain fog. My muscles have seized and are tight.

How did the pandemic affect your work on social media?

I had been talking about this stuff for years. In early 2020 I started posting about the pandemic. I was relentlessly telling people, “This is a mass-disabling event.” All of a sudden my social media blew up.

What impact has this success had on your work and message?

It felt really difficult to juggle talking to disabled people and educating nondisabled people on disability. I want to go back to just making inside jokes and having fun with disabled people. But I knew that I had to talk to nondisabled people because if they weren't taking it seriously, disabled people were the ones that were going to pay.

Do you see people’s failure or unwillingness to mask up the fault of the individual, or the fault of governments for not taking COVID more seriously?

I think it's all our responsibility. I think of it along the lines of drunk driving: Yeah, you have the choice to drink. You also have the choice not to drive. When you drive down the highway with other people in your car, you're responsible for them too.

We rely on both government and interpersonal intervention when it comes to drunk driving. But people seem not to understand that while wearing a mask is your personal choice, you are also responsible for not infecting the people you come across.

How have your Twitter hashtag campaigns helped further your advocacy?

Growing up as a disabled kid, for the longest time I was like, “What is the point of all these people coming up to tell me I'm inspiring and then not caring about what I say or do, and just playing in front of me?” Disability advocacy was the first thing I did where I felt like there was a purpose. It was the first thing that made me feel as if my life made sense.

I got my master's degree with the hope of telling disability stories to people around the world. I started doing hashtags because it made it easy for disabled people to find each other, and it made disabled people feel less alone.

It also forced nondisabled people to wake up and take notice, and that was a good side effect. It wasn't the purpose of us doing what we were doing, but it is always welcome.

Tell me about your hashtag campaign in response to Walensky’s comments about the “encouraging news” that people who were vaccinated against COVID and dying from the virus were “unwell to begin with?”

I was very pissed.

I started #MyDisabledLifeIsWorthy because throughout the entire pandemic we had been told, “We'll save whoever we're going to save, and then the rest of you, good luck. You don't do anything anyway, so how long are we going to pause the economy to make sure that this disabled person who's going to die anyway has a fair shot?”

So I was like, f*ck you. I'm sick and tired of people telling disabled people that our lives don't matter, that we have nothing to offer to society, and that there's no inherent dignity to being alive as a disabled person. In fact, that's your fault. We built a society that is for nondisabled people. We punish disabled people for existing and then say, “If you don't overcome the barriers I put there, then you don't deserve to be here.”

Is there anything else people know about disability justice or advocacy during the pandemic that we haven't talked about yet?

You need to look around. Everything that surrounds you is your retirement plan, your disability plan. If you live long enough, you'll experience disability in your life or somebody else's close to you, and what is left for you is exactly what you left for yourself. So if you want a world of ease and accessibility and kindness, build it now.

Who are other disability advocates that you recommend people follow online?

Alice Wong (@SFdirewolf)

Tinu (@Tinu)

Teona (@teonawrites)

Tee Franklin (@MizTeeFranklin)

Mia Ives-Rublee (@SeeMiaRoll)

Tim Boy (@blackautisticking)