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  • Kamsi Obiorah

Interview: Don't Call Imani Barbarin Inspiring

Imani Barbarin talks about how her firsthand experiences as a black disabled woman reflect larger systemic issues at hand and the ways in which she uses her nonprofit work and social media platforms as tools to further her disability rights advocacy.

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You might know Imani Barbarin if you are one of her 113,000 followers on Twitter who stumbled across one of her trending hashtags: #PatientsAreNotFaking, #AbledsAreWierd, or #UHateDisabledPeople. Perhaps you just read through one of her featured articles in Forbes, Bustle, and other top publications, or you came across a post from her personal blog, Crutches and Spice. Maybe you heard Imani’s voice when she popped up on your TikTok “For You” page, educating you about institutionalized ableist policies and social conventions.

A disability rights activist with cerebral palsy who juggles several thriving social media platforms along with her nonprofit work, Imani Barbarin has proven that she is a lot of things—but inspiring is not one of them.

When used to describe disabled people, harmful words like “inspiring” inadvertently downplay and belittle the accomplishments of disabled people and assume that their stories are only worth hearing if they have “overcome” their disability. “Disabled people have been told that we’re inspiring all the time, but there’s been no national organizing around disability rights that was outside the disability community. They would rather watch us suffer and then watch us overcome our disabilities because that’s more inspiring to them than actually helping us end some of these structural barriers,” Imani says.

As Imani explained to me via our online conversation through Zoom, when able-bodied people use words like “inspiring,” it is evident that they are merely stroking their own egos instead of working to actually combat the systemic ableism that disabled people—and particularly disabled people of color—experience on a daily basis, from the moment of their very own births.

For Imani, even getting diagnosed with cerebral palsy was extremely difficult for her and her family. “It took a network of black women to get me diagnosed as having cerebral palsy because my mom would go from doctor to doctor saying, ‘My baby is not moving,’” Imani says. “The doctors were literally looking at a limp baby and going, ‘Oh, she’s okay. She’s going at her own pace.’ And my mom was like, ‘No, something is wrong.’”

Imani emphasizes that the deadly combination of medical racism and the inspiration-industrial complex seen in corporations and people alike exacerbated the effects of the COVID-19 pandemic. “As soon as they started calling healthcare workers heroes, I knew it was going to be terrible,” she says, calling attention to the backwards nature of romanticizing the struggle of healthcare workers instead of changing their material circumstances for the better.

In the early stages of the pandemic, ableist medical rationing proposals soon became a problem for the disability community. These proposals essentially decided when to ration care based on preexisting or underlying medical conditions. Imani explains that if medical professionals thought that it was less worth saving someone with preexisting health conditions than someone more likely to survive and thrive after COVID-19, they would give care to the person without the preexisting conditions.

Lawyers at the nonprofit organization where Imani works went through their state’s medical rationing guidelines and pointed out that these measures were discriminating on the basis of disability.

Imani also recalls the case of Michael Hickson, a black disabled man whose doctors deliberately failed to treat his COVID-19 diagnosis because he was paralyzed and deemed not worth saving. Imani speculates that we will be unravelling more cases like that of Michael Hickson after the pandemic due to the legacy of medical racism and ableism.

Meanwhile, Imani uses her nonprofit work to repair the damage done to disabled people of color. As Director of Communications and Outreach at a nonprofit organization that specializes in disability rights, Imani helps to ensure that the organization tailors its messaging towards black disabled people who may not be aware of the services they are legally entitled to. Combatting the lack of cultural competency seen when it comes to helping minorities with disabilities is another task Imani takes on.

“For a lot of minority communities, claiming a disability is just one more thing that they can discount you for publicly,” Imani says. “It’s harder to get a job. It’s harder to get services. It’s harder to understand services. It’s harder to maintain and keep healthcare.” However, as Imani emphasizes, just because it is harder for disabled people of color to claim their disabilities does not mean that they are not entitled to receiving the proper tools and resources that they deserve.

The neglect that disabled people of color face goes hand in hand with the lack of inclusivity of the disability community in the Black Lives Matter movement—despite the fact that roughly thirty to forty percent of prisoners have a disability, and that disabled people make up roughly half of the people that are shot by the police. “We rarely ever recognize the fact that a lot of the people that are shot by police are black and disabled,” Imani elaborates.

One notable example of the mistreatment and criminalization of black disabled people that Imani highlighted was the case of Leon Ford, a man who was paralyzed after being shot in the spine by Officer David Derbish in 2012. Ford voiced that he was initially ashamed to tell people that he was shot by the police because he was afraid that they would assume that he was the criminal in the situation. In fact, the officers involved had misidentified Ford as a suspect with a similar name.

Despite the high correlation between disabled people of color and incarceration, people fail to make the connection between the two. “When we talk about incarceration and the school-to-prison pipeline, that’s mostly kids with disabilities that are mostly people of color as well, that are criminalized for their expression of disability, who are not given the proper resources, tools, and accommodations to thrive in school, and then are ushered into prisons and jails,” Imani explains.

With regard to the failures of the Black Lives Matter movement and a lot of community organizing around blackness and racism in this country, Imani says, “We give a lot of lip service to disability, but we don’t really include too many disabled people in that conversation.” Acknowledging the presence of the disability community is not enough: “You have to include us in the planning and the messaging and the community building, because we can’t ignore that it is a part of our story just as any other echo of racism is,” Imani says.

The exclusion of disabled people of color from community organizing and large-scale anti-racism movements reflects the limited representation of disabled people of color in everything ranging from politics to the entertainment industry. “There was no representation when I was growing up of disabled adults who were also black. Like there was just none. And the few that we had, it was, ‘Oh, they overcame their disability,’” Imani shares. This limited representation became a source of Imani’s internalized ableism.

“There is this idea of respectability politics that formulates in black disabled kids’ minds where you are not respectable if you are disabled regardless, and you’re not respectable if you talk about your disability. And if you lean into it more, then there’s more reason for the outside world to police your existence,” she says.

Meanwhile, Imani had to navigate the colliding worlds of disability and blackness in white suburbia. Due to the ignorance of her white neighbors, Imani’s family constantly felt like all eyes were on them. “We always knew that we were being watched, but what my dad couldn’t explain to me because he didn’t grow up visibly disabled was that I was also being watched in a completely different way,” Imani shares. She also notes that her existence was constantly being publicly examined: “People would make comments about me, or say, ‘I didn’t know that people with cerebral palsy could be black.’”

Imani’s dad also experienced racism differently in the presence of her disability. “Doctors and particularly white women always thought that he was abusing me, and that’s why I was disabled. He was perceived as a threat in any room,” Imani says. The harmful beliefs that the larger community held about Imani’s dad stemmed from the little to no representation of black disabled people in the media.

Constantly having to quiet parts of her personality around others, Imani soon learned to infantilize herself in public spaces to make her dad look less threatening in light of the racist tropes placed on him. “Even until I was eighteen or nineteen years old, what I would do is I’d make myself extremely physically small and then also like really baby-like, and then hold my dad’s hand and then make sure that he held my hand in public spaces where he’d be considered a threat so he’d look less threatening because he was taking care of a disabled girl,” Imani says.

As Imani grew up and went to university, she witnessed the ways in which ableism manifested itself in academic settings. Before transferring to Eastern University, Imani spent her freshman year and part of the first semester of her sophomore year at the University of Pittsburgh, where she experienced inadequate accommodations. She says that she was frozen out by her teachers after she was unable to leave her dorm room for nearly a month due to a severe snow storm.

Imani recalls, “I really did need accommodations because my professors would not email me work because I was like, ‘Listen, I’m stuck in my room. I literally cannot get to class. It’s icy outside. I can hurt myself.’ They were like, ‘Oh, well, other students can make it.’ I was like, ‘But I can’t make it.’”

Meanwhile, the “inspirational” gaze that Imani was subjected to during her college years took a toll on her mental health, as she was always questioning what her talents truly were. Being unable to decipher whether people are complimenting you because you are disabled or because you are genuinely good at the work you do is a struggle that many disabled youth face.

For Imani, writing became a way to escape the burden of people’s preconceived notions about her. “I really love the idea that you have to read my story in order to know about me. You can’t just look at my body and make assumptions and treat me based on those assumptions. You have to actually read my words and absorb them and then react to them,” she voices.

Despite the fact that Imani had hated writing as a child because her mother would force her to do it on top of all of her other homework, she began to enjoy writing and use it as a tool to explore different worlds. Now Imani uses her writing talents for advocacy, combining firsthand accounts of her experiences as a black disabled woman with reflections on the larger systemic issues at play.

Imani explains, “I kind of used this formula of telling my own story and then using it to reflect on systemic issues within the disability community without and outside of it because I knew that there was always going to be this question of, ‘Is that just your story, or is there something bigger?’”

Imani used her time at college to develop these writing skills. She shares, “Every single time I took a course, I would always veer towards courses that were writing-heavy as opposed to question-and-answer-heavy.”

With degrees from Eastern University and the American University of Paris, Imani notes that there was always going to be some sort of problem with accommodations. This particular sentiment is the reason why she believes that disabled youths should learn to start advocating for themselves as soon as possible, contrary to societal structures that infantilize disabled people. “Making sure that students know what their rights are from a very young age is not something that we equip students with going into academia,” Imani says.

Unfortunately, during her adult life, sexism was another form of institutionalized discrimination that Imani experienced differently in comparison to her able-bodied counterparts. At the heart of this particular form of prejudice and stereotyping was the desexualization of disabled people.

“There is always this assumption that disabled people aren’t really sexual beings. We’re constantly ignored from every conversation around that,” Imani says, “and particularly when it comes to gender and safety in certain spaces, we’re completely ignored when it comes to the abuse and the entitlement people have towards our bodies and particularly disabled black girls.”

One of the most outrageous experiences that Imani has endured with regards to the desexualization of disabled people took place at a Sally Beauty Supply: After purchasing some hair supplies and leaving the parking lot of the store, an unknown man physically lifted Imani up without her consent.

“I was getting into my car, and I didn’t hear anything come up behind me, but this man bearhugs me from behind and starts lifting me off the ground,” Imani shares. “He was like, ‘Well, I was just trying to help you.’ And I’m like, I don’t care what you were trying to do!”

Imani theorizes that this experience stems from the ingrained idea that disabled people should be grateful for any attention, and should never expect sexual intentions to be aimed at them because they are not “desirable.” Disabled people, and particularly black disabled women, must be included in conversations about sexual assault.

Meanwhile, several white disabled politicians are making matters worse for the disability community. Imani addressed the uptick in white supremacist disabled men elected to office, explaining how problematic and concerning it is. She fears that these men will give Democrats “the fight of their life” when it comes to healthcare. Imani describes these men as “the minority that can help push forward these white supremacist ideals and then fall back on their disability to scapegoat any questioning or any sort of critique based off of their own actions.”

Imani specifically calls out GOP Rep. Madison Cawthorn, who was elected to office on November 3, 2020. Among other things, Cawthorn has encouraged the actions of the pro-Trump insurrectionists who stormed the Capitol building on January 6. Imani says, “When Madison Cawthorn at the Republican National Convention stood up out of his wheelchair, I knew he was going to be elected because nobody cares about anything he does beyond inspiring non-disabled people.”

The tokenization of disabled people is also shown within the entertainment industry. “While we’re seeing a lot of increase in disability representation, a lot of the times we’re background characters or secondary characters,” Imani notes.

Disabled people of color are essentially left to fend for themselves in this area due to the disinvestment in their creations and the way that society paints their work as frivolous and unnecessary. Even when productions are directed by people of color, the disability representation is oftentimes given to white people.

Imani believes that the film Death in a Funeral is a perfect example of this. “There are a couple of elderly characters that were aging into disability, and at the time we didn’t know Chris Brown was on the spectrum or considered neurodivergent, but they still had Peter Dinklage be the disability representation,” Imani says.

What’s worse is when directors and film producers cast able-bodied individuals in the roles of disabled people. Some of the most recent examples are Music—a 2021 film recently dubbed “inspiration porn” in which neurotypical actress Maddie Ziegler plays a young girl on the autistic spectrum—and Me Before You—a 2016 tearjerker in which a white banker who was left paralyzed from an accident and dies by assisted suicide is played by able-bodied actor Sam Claflin. “That’s one of my biggest gripes with the media industry is that they make us live by stereotypes that they create and reinforce, and then they don’t even involve us,” Imani remarks.

Alongside film and television, social media platforms are also major proponents of the exclusion of voices of color and disabled voices. Enduring everything from having the manual captions of her videos removed by TikTok to witnessing the credit stolen from the work of black artists, Imani is sick and tired of social media apps failing to do the bare minimum of making their services as equitable as possible.

“I think that Instagram profits off of black people, but does not want black people involved,” Imani says. Apps like Instagram need to implement better ways of making sure that creators of color are compensated and protected. Imani suggests that an increase in legal rights can help with this.

“I think that there should be more legal rights for creators on the Internet in terms of sustaining their own content, because if somebody else could profit off of the work that you do, you should get a cut of it. And there’s this implicit contract that we sign every single time that we use either social media or Google or any of these things. They can use whatever they want from us, but this should not be the case. Simply using a service should not give point-blank ability to profit off you and then leave you out of the equation,” Imani explains.

Meanwhile, corporate brands and social media apps are not the only ones profiting off of the mistreatment of creators of color. Imani believes that racially ambiguous influencers are also complicit in these actions. She says, “People like the Kardashians, people who are racially ambiguous, are basically the Instagram filters of black people.”

The online world of social media may seem daunting if your Instagram “Explore” page is filled with white creators taking advantage of trends that clearly appropriate the cultures of various communities of color. But before you log off the app, make sure to take a peek at Imani’s page, where she reposts her TikToks and widely-shared tweets discussing disability rights and promotes projects like her recent collaboration with Rep. Ayanna Pressley and actor Bradley Whitford.

A lot of us need to follow in Imani’s footsteps and use social media as a tool for genuinely advocating and raising awareness for all marginalized groups of people. The sooner that communities of color and communities in general start recognizing ableism as readily as they do racism, sexism, and other forms of discrimination, the closer that the general population will be to dismantling the white supremacy embedded in societal institutions.

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