“I honestly believe if Chadwick Boseman was open about having cancer, they wouldn’t have allowed him to do ‘Black Panther,’ ” Lee says. “Even though, he still did the job, and did it amazingly well. I’m getting chills just talking about him. He was just so creative and so talented.”
Lee is also an actor and a model. At age 7, when her mom handed her a Polaroid camera for her birthday, she immediately held a photo shoot in her front yard. She knew then that she wanted to find a career in front of a camera.
She also knew that as a Black person with a visible disability, she wasn’t going to find her way there easily.
“People would tell me that was something I could never be, because no one wants to see a Black girl with a disability on the cover of a magazine or on a movie screen,” says Lee, who has spina bifida and uses a wheelchair to get around. “People would tell me that it was going to be impossible and that I shouldn’t even try.”
When Lee learned of Boseman’s death, she felt that same swell of shock and sorrow that swept over so many of us who had never met him but felt we knew him through his powerful portrayal of King T’Challa and other Black icons, including Jackie Robinson and James Brown.
She also felt sadness for what might have been. Boseman never spoke publicly of his cancer and whether it was his choice to keep that part of himself private, or whether the entertainment industry left him feeling he had no choice but to do so. Lee can’t help wondering what it would have meant to his fans to hear him talk about what he was going through.
“He is the Black community’s superhero,” she says. “Black kids don’t get told that they can be actors, that they can be doctors, that they can be whatever they want. Black kids don’t get that. And disabled kids don’t get that. Imagine how many kids that would have been inspired to know that their superhero had a disability, too.”
In the days since Boseman’s death, it has been impossible to miss the heartfelt tributes to the Howard University grad’s abilities as an actor and his grace as a person. But there have also been powerful and important — and, yes, at times, contentious — conversations about the quietness around his cancer, which is considered a disability by the federal government.
“So many of y’all hate disabled people so much that you’re deeply uncomfortable with Chadwick Boseman being referred to as disabled and his experiences being discussed through a disability lens,” the Black Disability Collective tweeted. “Cancer is a disability. Unpack your discomfort with this.”
To not tell us about his cancer was Boseman’s decision. Lee and other disability rights activists I have spoken to in the days since his death respect that. But they also see the value in all of us talking more about our disabilities and illnesses, whether they are visible or nonvisible, permanent or temporary.
“This past year has been immense for me in terms of being more comfortable informing others about my own disability,” says Jennifer White-Johnson, an Afro-Latina mother of an autistic son and an assistant professor of visual communications and digital media arts at Bowie State University. She has ADHD and Graves’ disease and says that, “as an educator of color, I was always concerned about revealing those things to students in fear of being judged or not taken seriously. As disabled Black folks we’re often expected to keep it moving, masking our disabilities.”
After Boseman’s death, White-Johnson posted on Instagram an image of her son that she created two years ago. It shows the boy with a scene from “Black Panther” superimposed across his body. King T’Challa stands in the place near his heart.
“Some folks may think it’s a little too much to compare kids with disabilities to super hero’s,” she wrote alongside the image. “. . . But that is exactly who black disabled people are. We are hero’s and we’ve been carrying the weight of the world on our backs uplifting each other into greatness even on days when we think we don’t have the power to do so. Just existing everyday as our true disabled selves is an act of resistance and super power.”
Lee has landed roles in independent films and commercials. Her first was for Apple. But she says the “ableism that exists in Hollywood” is the reason she now spends more of her time as an activist than an actor.
She lives in Los Angeles but works as the Hollywood inclusion associate for RespectAbility, a nonprofit based in Rockville, Md., that provides guidance to the entertainment industry, with an aim to “fight stigmas and advance opportunities” for people with disabilities.
Lauren Appelbaum, who is vice president of communications for the organization and is currently working out of her home in Potomac, Md., says she and Lee often give presentations together for studios and have consulted together on television projects. The organization has worked with the Walt Disney Co., NBCUniversal, ViacomCBS, Sony Pictures Entertainment and Netflix.
For Netflix, Appelbaum and Lee consulted on the show “The Healing Powers of Dude,” which features a middle school student who has social anxiety disorder and a best friend who uses a wheelchair.
For DreamWorks, RespectAbility board member Delbert Whetter, who is a deaf filmmaker, consulted on “Madagascar: A Little Wild.” The cartoon, which is expected to debut Monday, has a deaf character who uses sign language.
“Our focus is on the studios, because they are creating content that millions of people are seeing,” says Appelbaum, who lives with a nonvisible disability, chronic pain. The goal, she says, is to have what’s on screen better reflect society and to ultimately remove stigmas. “In an ideal world, people with disabilities would be able to talk about their disability and it not be seen as a negative but be seen as a positive, in the sense that it’s another lived experience.”
Because of the pandemic, she is now conducting presentations with studios online. During one, she told the group, “I’m not asking anyone here to publicly disclose it, but I’m willing to bet that at least two people in this room have some sort of disability that other people in the room don’t know about.”
A private message, she recalls, then popped up from a person in that group telling her that they were one of the two.
Similar hushed admissions, Appelbaum says, used to follow the in-person presentations she gave: “I can’t tell you how many times I’ve been speaking to executives behind the camera who have brought up the fact that ‘I have cancer,’ or ‘I have depression,’ or ‘I have dyslexia.’ ”
Lee says during auditions, she has met actors who, while trying to show her support, have told her about their situations.
“I’ve had a lot of them confide in me that they have a nonvisible disability, but they are told not to talk about it, and that if you can pass, you should go with it,” she says. “There are people who tell you to keep your disability quiet, because you’re going to be looked at as less than, or as if you’re not going to be able to do the job.”
She says she can’t hide her use of a wheelchair, but she has started talking more about disabilities she could keep private, including dyslexia and dyscalculia.
These conversations are needed, Lee says. And that is especially true for communities of color, she says, because too many people within them still see disabilities as family secrets that should remain hidden. As we talk, I tell her about a column I wrote about my aunt who had an intellectual disability. In it, I describe how when I first wrote about her at the age of 15, some of my family members were upset that I mentioned her disability, even though the focus was on her strengths.
Lee says she doesn’t fault people of color for not wanting to disclose their disabilities, because for so long, they were judged based on how much physical labor they could provide. But she hopes, she says, that Boseman’s death will get more people talking.
About people with disabilities who are Black and Brown.
About what is seen on our screens, and what is not being seen behind them.
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