San Diego Union-Tribune (Sunday)
Boseman, his work was inspirational, but not because of cancer
As family, friends and fans mourned the death of actor Chadwick Boseman late last month, those outside of his innermost circle were surprised to learn that he’d been diagnosed with colon cancer in 2016. Through grueling filming schedules, press tours, physical fitness training for various roles, chemotherapy and surgeries, he delivered legendary work as an actor while also dedicating time to visiting children who also had cancer.
As the condolences and praise for him and his work poured in, people also began to remark about how his working through that level of pain in silence was admirable, strong, dignified or inspirational — and that’s a problem.
“Ableism is the structural, interpersonal and systemic discrimination against people with disabilities, and it manifests itself in a lot of ways. One of the ways that we see that happen is people hide their diagnoses from their colleagues or bosses, and from the world,” said Imani Barbarin, a communications director, writer, blogger and disability activist who runs the website Crutchesandspice.com. “So when Chadwick Boseman died, and his family revealed that he had had cancer for four or five years, it really didn’t surprise me.”
Barbarin, who has cerebral palsy, offered her insight on the ableism that’s taken place in these conversations around Boseman, his cancer and his work, and the harm caused by romanticizing and weaponizing the ways in which disabled people choose to live their lives. (This interview has been edited for length and clarity. For the full interview, visit sandiegouniontribune.com/sdutlisa-deaderick-staff.html.)
Q:
When actor Chadwick Boseman passed away last month, his family shared that he’d been battling colon cancer since 2016. The rest of the world was shocked to learn of his illness, including his former castmates and colleagues in the entertainment industry. What does his decision to keep his cancer diagnosis a secret say about our culture’s ableism?
A:
A lot of people with disabilities hide their diagnoses for fear that they will lose their jobs or lose any possible opportunities that they’ll have. And we see it manifest especially in the entertainment industry, in which only 3 percent of speaking roles are of disabled characters. Of those, only a handful of (people in those roles) are people with disabilities, and an even smaller amount are people with disabilities who are Black. So, I was shocked that he had passed away, but not shocked that he kept his diagnosis a secret, especially in the industry in which he worked.
I think one of the things the Black community has to contend with is that he worked primarily on
Black films, with Black directors, actors. He was around a cohort of people who are like him, racially, but disability-wise, we tend to keep to ourselves when it comes to disability. We refuse to accept any other marginalization that can mean further stigma.
Q:
What are some of the risks involved for people who are disabled, when it comes to choosing whether or not to disclose their disability or illness?
A:
Well, first of all, there’s the question of whether or not they’ll be believed. I have a visible disability and people still come up to me and say, “Oh, I didn’t know Black people could have cerebral palsy.” So there’s that. And then there’s also the fact that, particularly with Black people, a lot of our disabilities are from stress: being located in food deserts, racism, police brutality, working ourselves to death just so we can put food on the table, or make sure our lights get paid. So, I think that when people disclose, there’s the first question of whether or not they’ll be believed, even by doctors. Some doctors don’t believe that Black people are experiencing these medical issues within their bodies. There’s even a barrier to get a diagnosis to be believed.
I think there’s a lot of fear and stigma around saying that you’re a disabled person. Some of us have visible disabilities, so it’s not really up to us whether we disclose, and some of us have invisible disabilities and it can be very threatening, especially when you have a job and bills to pay.
Q:
After his death, there was the expected and deserved outpouring of condolences and remarks on the legacy he left behind, in both his work on and off screen. But there have also been conversations related to his illness that have focused on attaching “strength” to his suffering in silence in order to do his work. Does solely focusing on what he accomplished during his illness invalidate his experience with cancer?
A:
I think this is a conversation that I don’t think he would’ve wanted anybody to have, and that’s the whole point. I think that he wanted to be an actor, he wanted to do his job, he wanted to create a legacy. He wanted to comfort other sick people and sick children especially. I think that any time a disabled person is successful — or successful in society’s eyes — we’re used as a tool to oppress others, essentially. And we don’t really take the time to question the society in which people make such decisions, like having to keep a diagnosis a secret, or like having to go through chemo and cancer treatments alone.
I think another thing that we don’t really talk about is that disabled people are seen as having zero value because we don’t produce in the same way as non-disabled people. So, in order to place value on our lives, they look at our work ethic, even despite the fact that we don’t want to be used as examples to oppress other people. We attach work ethic to disabled people, or we attach inspiration to disabled people in absence of societal value. A lot of the same people that are calling him inspiring now were making fun of him just six months ago. They were very vocal about it, making fun of him. He had to shut down most of his social media. There’s this idea that when disability appears and manifests itself in different ways, that is discounting. But as soon as it can be profitable to somebody else, it is suddenly an inspiration.
lisa.deaderick@sduniontribune.com