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‘She understood the assignment’: Imani Barbarin talks Lizzo’s lyric change and advocating for disability rights

Imani Barbarin (@crutches_and_spice) is a content creator known for her disability advocacy. With more than 430,000 followers on TikTok and 114,000 followers on Instagram, she’s the voice of reason when other creators need to be checked on ableist language, and she provides insight on how everyone can be an advocate for disability rights. During her first attendance at this year’s VidCon, she spoke on a panel called “Diversity Spotlight: Playing to Our Strengths,” with Jessica McCabe and the Valentine Brothers, and talked about what it’s like being a disabled content creator and how to improve on TikTok—both from the community side and the app side. Barbarin spoke with us about how she balances being a content creator, how to navigate these spaces, and her upcoming first novel.

Thank you so much for meeting with me, I really appreciate it!

Thank you!

I want to talk first about the content that you create. I can see that you do a lot of emotional labor for people with your advocacy work. How do you balance making that sort of content with the content you enjoy creating?

I understand that it is emotional labor, but I feel like I was so afraid that prior to doing this work that I wasn’t here for a reason. I was very much so listless and did not understand where I fit in, because I couldn’t find jobs. The jobs that I wanted wouldn’t want me and when I started disability advocacy, it made my life make sense in a way that nothing had before. To a certain extent, understanding that I need to take a break from that is hard for me.

Do you feel like you make the content for yourself or for other people?

I try to make it for disabled people. There are a lot of times in which I’m talking to non-disabled people or utilizing communications, but for the most part, I want people to understand what ableism is, and I want disabled people to have fewer interactions that rock their world on a daily basis with the non-disabled world. 

Early in my content, I really didn’t give a shit what non-disabled people think because everything in the world is catered to them. What about disabled people? What about our needs and what about what we want to do? Making sure people are aware of that dynamic is half the battle and getting to do something about it is something entirely different.

During the panel, you compared accessibility inclusion to a Cheesecake Factory menu—“It’s long, you can’t read the whole thing. But I want everybody to have as many options as possible. I want people to be able to mix and match things… I want it to be on disabled people’s terms and I want people to have access to everything.” I feel like you also help dismantle the taboo around disability and looking for help.

There are so many non-disabled people or people who think they’re non-disabled who need accessibility and struggling for what? To look productive?

I feel like I look to you, whenever there’s like some sort of like ableist language going on and the one I remember is the Surviving Sophia scandal that happened in November 2021. I remember people saying she was schizophrenic and you came in with a video about how people shouldn’t use ableist language.

I think with that situation, people don’t realize just how deep into our language ableist language is. People don’t realize that a lot of the things that we used as descriptors for things we don’t like have roots in disability. Calling somebody dumb used to refer to people who were non-speaking or deaf and calling somebody an idiot used to be a diagnosis and people don’t realize those roots are there. No matter how slang or like how language is developed to take away from those things, it doesn’t change it.

I don’t like getting into conversations about ableism because there’s a lot of back and forth, but people don’t want to give up these ways of speaking and I understand that there’s the talking the way we talk and the way we relate to our community, but at the same time, there has to be some room for nuance.

Everyone tries to make it black or white, but we live in a gray world.

There’s no room for gray on social media, which is weird because there are so many people on it…I feel like a lot of people get bogged down in the right or wrong but they don’t understand that there are different ways of seeing things as well.

During your panel, you also mentioned that Lizzo’s course redirection (acknowledgment of the slur, apology, and action) should be the standard and not just an example.

There was so much hemming and hawing. She just did it in private and she took responsibility and then moved on—that’s it. But people wanted to browbeat her because she’s a fat, Black woman. However, she understood the assignment.

What are some changes you’d like to see on TikTok?

I would really like the content moderation team to get it together when it comes to disability. I’ve seen a lot of disabled people have their accounts taken down, demonetized, etc. because social media in general has a problem with viewing disability in any other light than positive.  I would like TikTok and other platforms to be better at actually cultivating disabled voices and realizing that [disabled people’s] lived experiences are not grotesque.

What are you looking forward to in the future?

I’m working on my book, which was acquired by Simon & Schuster. It’s called If I Were You, I’d Kill Myself. Every chapter is headlined by a “compliment” somebody has given me. It’s kind of developed from a conversation between me and my mom. But she raised me to be a Black woman first and now I had to come to terms with my disability myself.

My mom kept diaries of my entire childhood and it was mostly because she was keeping lots of medical notes for me and she gave them to me when I was 18. My dad also remembers things so that’s helpful, too.