Chadwick Boseman and his work were inspirational, but not because of 'pushing through' 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.)

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. There's also the fact that there's stigma attached to being a disabled person; things are less accessible, people think of your accessibility needs as a burden, people question why you're in the room or why you stopped staying at home because that's what they think that's what disabled people do all the time; which is valid because some people do, but people want to live their lives, as well, and have different ways of doing that.

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 anytime 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. So I think that these conversations around disability and work are necessary.

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. And I think that that very conversation, during the time in which he decided not to disclose his diagnosis, he very much was thinking about.

Q: I've seen a lot of romanticizing his working through cancer as "heroic" or "inspirational." Can you talk about the harm caused by using Boseman's personal experience with cancer as a way to pressure others, particularly others with disabilities, to be more productive?

A: I'll tell you a story: When I was younger, I was walking home from school in New York, and we passed by a homeless man, and a family member who was with me said, "You want money? Look at her, she's disabled. You can get a job." And I was like, what? I was 9 or 10 years old. We kind of use disability as a weapon in order to ignore systemic issues. Cancer patients have said that there's no valor in working yourself to death, working yourself above and beyond, to be more productive simply because you have a diagnosis. Or, working at that level while you're sick. People are sick. He must have been in incredible pain and dealing with it completely alone, other than the people in his life that knew. To weaponize that against somebody else to say, "Why are you not productive?" That's a problem, especially when we live in a country in which 19 percent of the population is disabled, multiple households have a disability within its family structure. It's not uncommon. For all of the people who think they are going to be inspired by it, there's going to be multiple people who never disclose the fact that they're disabled and they're struggling. They're struggling incredibly hard. I'll liken it to this: We're six months into a pandemic right now, and people are living with depression and anxiety and fear about what's going on. How hard is it to work during this time? People are very much struggling, so I think that we need to really evaluate the way in which we consider work, in which it's legal to pay disabled people below the minimum wage in 38 states. So telling disabled people that work is their way out isn't always a valid statement. People working above and beyond what their body is capable of is harmful, and then excluding people because you refuse to make accessibility available is a problem.

Q: Are there ways that we can create an environment that is less ableist, encouraging the value of things like rest and self-care, instead of potentially making people feel guilty about not "grinding" or working hard enough to prove themselves?

A: I think we have to reevaluate our work week, to begin with. What does it mean to work for as long as we do because it's unsustainable at its current levels. People working 40, 50, 60 to 70 hours a week and barely can make ends meet? We need to tax the rich and fund social programs, fund childcare, mental health care — all of these societal programs that could work for us. We very much need to detach work from value, in terms of who we value in society; your work is not your value. We are taught from a very young age, especially as disabled people, especially as Black people, that we have to make ourselves useful or we'll perish. So, I think we really need to evaluate that idea.

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