The King and Lies
The day you realize as a Black person, that your people were enslaved, and are still being oppressed, in order to provide the foundation of wealth in this country, is a hard one.
An echo of that pain reverberates in our hearts when our collective heroes die in a way we perceive as sudden, especially when we judge the grim reaper’s arrival as early as well.
Being Black in America is being constantly aware that you’ve been stolen from, will never be paid for that debt, but also will be thought of as the thief in every space you choose to occupy as The Other.
It is fitting then that when one of the few figures we unanimously love dies, we feel the collective trauma of having yet another soul stolen, particularly in this pandemic year, when so many of ours are dying neglected deaths in a broken health care system.
This pain was therefore louder and deeper when Chadwick Boseman died.
Somehow we all love this King
The African American community is not a monolith, of course.
Again, we agree on few things, rarely moving in a single wave in our sea of Blackness. But when our brother Chadwick fell, you could almost feel the ripple of sadness move over our nation within a nation.
We know people outside our community shared our grief. But no one who looks like them was kidnapped from their land and brought to another in the name of an enslavement so awful it needed its own name.
Slavery used to mean you were forever separated from your family and had to pledge fealty to a new nation. You may have lost your heritage but you were given a new one.
You may have spent time in servitude but it had an end, even if it was the end of your life- slavery did not last generations, and your children didn’t share your fate. You wouldn’t be assaulted to provide more personnel to be enslaved and treated as animals, despite a familial relation.
It wasn’t assumed, even if you were born outside the cruelty of enslavement that everyone with your skin color was enslaved.
And, one miserable year into the rule of a horrible reality TV star who once took a full page ad out in the New York Times to call for the imprisonment of innocent Black boys? We took a vacation from our agony together, to receive a gift of celebration from someone whose crown existed past the pretend on the screen with the film Black Panther.
We as Black people from all walks of life were able to gloriously pause, reflect and dream of a world where we’d never been ripped from our ancestral home.
That joy united us so much that for years afterwards we greeted each other and the man who played the King of Wakanda with the Wakandan salute.
And so of course, the grief over his death united us too.
Behind the veil of our rare unity, the wound of ableism
I’m about to do something Black mamas across the globe have taught should not be done–airing some dirty laundry in front of our neighbors. As a Black mama of two sets of twins by proxy and over a dozen niblings by love, I’m going to use my power to overrule for a simple reason.
All of our oppression is connected. The sooner we see that, the sooner we build the strategies to become free. Not one oppressed group has become free in a vacuum.
Not one, not ever.
And in the modern day, each oppressed group contains multitudes. Ignoring those subgroups needs is just oppressor cosplay masquerading as liberation.
Adopting the oppressor role, consciously or not, is not the same as being free. It’s a lesson that seems to escape so many, but it’s one that must be learned if progress is ever to become permanent.
We don’t have a choice if we want freedom. We must align ourselves to achieve any true and lasting freedom.
This complicated conversations and dynamics between Black people who are disabled and Black people who are not is part of that journey.
We have work to do for Black Disabled people and it starts with understanding. And if we had that understanding, the sorely needed time of connection and release could have been a catalyst that helped us integrate Black Disabled people more fully into the larger culture.
Instead it showed us yet again, how alone we truly are.
How do we regard and support our Disabled people in the Black community?
So what happened that interrupted our collective comforting of each other?
What halted the first opportunity most of us had during the entire pandemic to experience shared grief and mourn together?
When Black people who had been through disability by cancer or cancer itself encountered the thoughts of Black people who have not.
In and of itself, that wasn’t the problem.
The problem is what it has always been–ignoring the lived experiences of disabled people and casting us aside, even unto our very thoughts. I’ll get into specifics in a moment. It’s just so confounding and stressful that it feels irresponsible to broach the topic without background.
I truly wonder where this comes from because every Black family loves a disabled person. Auntie so-and-so can’t walk without her cane, so you and your 20 cousins send her $40 out of every paycheck. We have the highest incidence of disability by race, at 25% of our population, vs 20% of white Americans.
Making matters worse often the richest sibling or cousin takes care of the sick elder–not realizing they have a hidden disability that with overwork and stress, will make them the sick elder one day.
Contrary to popular belief, we do what we can to take care of our own before the phrase ‘mutual aid’ was a thing. The problem is not about caring about individual lives. We have less supportive family members as well, the difference is usually the reason.
But just like when white people are married to Black people or have black children it doesn’t mean they’re not racist?
Just because Black people are having one disabled family member who they may not even is recognized as chronically ill in their household or extended family? That doesn’t necessarily mean that they stand up for disabled people, Black disabled people and their rights, beyond what they do for that specific person.
The truth is, some of our subcultures may be more proactive and caring for the disabled and elderly one on one but that hasn’t erased how we’re treated as a group.
We need more support from other Black people for the Black Disabled Community
We’re forgotten when it’s time to stand up for us in conversations, call out and name ableism, misogynoir, and antiblackness, and when it’s time to vote for our issues on the ballot.
Even when it’s time to protest in person, peaceful protests off-line are rarely accessible. Information and ways to participate can hard for some of us to access or read.
From my perspective, Black disabled people are infantilized, talked over, told to pray on it, and purposely left out of movements like Black Lives Matter from the start because “our issues will distract from the main cause.”
And yet 40- 50% of Black people who die from police brutality are Disabled as well. And disability rights and Black rights have always been connected.
Sometimes I wonder how we became so ostracized? Does it have similar roots as colorism? Of course disability extends back to the period of enslavement.
Some of us were purposely disabled by our white captors for attempting to escape. Even our desire to escape was labeled a mental condition.
And the wrath in the wake of our attempts at liberation were visited on our enslaved peers.
Then there were those of us born with disabling conditions. We don’t know how long fibromyalgia, ME/CFS, Lupus and other disabilities that aren’t apparent have been around. There are also those living with intergenerational trauma and the hazards from living in a racist society.
Even today people are being shamed for being lazy when they are probably fatigued, in pain or need more sleep and rest to function that most people.
Is this where the division began?
Are we stuck in a useless pattern designed to continue to defeat us?
To critically assess the breakdown in the conversations that happened the day Chadwick Bozeman died, a passing glance at the world of Black disabled people isn’t enough. We must include an examination of the journey Black cancer patients are immersed in and the constructs we are still encountering and pushing back against daily.
The special pain of community invisibility on the weekend of Chadwick Boseman’s passing
Returning to the specific lies, ableism and myths from the day Chadwick Boseman died in my memory, it upsets me somewhat that I expected some of the standard ableism, because it is always there.
Upon finding out how long Boseman must have been ill, we first received the ableist notion that if Chadwick Boseman was able to work hard and produce at such a high level of art when he was dying, how are the rest of us not achieving our goals?
You would think that with the number of times this productivity myth comes up, I’d be immune to the pain and accompanying shame of knowing that my body can no longer maintain a work schedule that can keep up with the production of my mind.
In a society based on the tenets of capitalism, we are all programmed with the thought that the most useful people in the society are the ones that can most enable capitalism further. If you are able to produce in a way that generates capital for someone, you are at the top of society.
The Lie of Omission
If you cannot, it doesn’t matter that you can’t. If you’re poor, you’re seen as deserving of poverty and undeserving of joy and pleasure. If you’re chronically ill or disabled, you’re seen as the failure that couldn’t push through or be ‘fixed.’ Should you be a person of color, you’re seen as less of an American, if not less of a person.
Some don’t see us as people at all, particularly if we’re Black.
Or we’re completely invisible, not regarded at all, as in the idea that if you can’t work at a hustler’s pace, you’re not even part of the conversation. You don’t even count.
Because when Black disabled people objected that day and pointed out that some of us aren’t actually able, that’s what our abled peers said. That when they’re talking about “everybody” of course they don’t mean us.
The fact that this is erasure didn’t seem to upset them, or even occur to most of them at all.
The Lie of Assumed Knowledge
After the initial shock wore off, some of us who arrived on social media, particularly Twitter, to comfort each other, started wondering how long he must have known.
In that speculation, those of us who were disabled or have had cancer realized that he must have had to keep his condition secret, a notion which received significant pushback.
What I realized later about why the pushback hurt me and other friends who have fought or are fighting cancer so much is that it wasn’t just about the fact that of course he’d have to hide or be treated differently.
And it wasn’t just that we knew this from experience and that people weren’t listening to us.
And it wasn’t just that they weren’t listening to us because they saw us as disabled and therefore as people whose opinions could be safely disregarded.
Nor was it the even more frustrating fact that they were doing so while simultaneously arguing whether or not cancer was a disability with cancer patients who definitely knew from experience that yes, it is.
It was that special pain of cancer patients being under an additional cloak of invisibility, except when we were thought to be overcoming, heroic, or dead.
Except between diagnosis and the first few chemo visits, even people close to you don’t really see you anymore. You’re supposed to be a warrior on a battlefield fighting.
What you really are is a passenger on a dangerous roller coaster that is falling apart and repairing itself as it throws you around. The only way to win is to hang on. Warrior energy isn’t always as good an idea as being a survivor and just hanging on.
You might need to scream or cry or sleep or eat when you never want to see food again. Or deal with the loneliness when people stop coming with you to chemo after the third round.
Or figure out how to negotiate paying bills when you’re in recovery and you can barely speak on the phone but the lights are about to be cut out.
We know the realities of cancer and disability. And yet again, no one listened within our own Black community.
We knew there was no way everyone around Chadwick knew he was sick outside his personal circle of friends.
It seemed self evident to us – if it wasn’t a secret, wouldn’t we already know?
Second, if you’ve ever been a public advocate for cancer patients while having cancer, you know that at the final stage of any job search, when the lawyers get involved, no way will they allow a company to take on that liability or insure you.
You’ll absolutely get to that last stage of job interviews. But if there is any public knowledge or disclosure of a hidden health condition, as long as it isn’t formally stated, chances are, you won’t get hired. You’re just too expensive.
And if you do disclose, they can often find a reason not to consider you at all.
It’s not as if it is a secret that employment discrimination against cancer patients exists.
The Lie of disability as a negative
Having a chronic illness or disability is no walk in the park. But it’s not a negative either. It’s simply a particular state of being.
Of course the day of Chadwick’s death, there were debates as to whether cancer counted as a disability. The reason for that argument is even worse though – no one wanted to think of Chadwick Boseman as disabled. How could the man who played Black Panther possibly be disabled?
Because abled people, regardless of race, find it so difficult to hold the idea of anyone being talented, beautiful, graceful, compassionate or any other typically desirable trait, at the same time as having disability.
Some even saw it as an insult to call Chadwick Boseman disabled, as if that reality could make him less of a person. Some of us were even accused of trying to use his cancer status for some sort of activism campaign or political agenda.
Disabled is not a curse word. It is an identity. Some of us have brown eyes. Some of us are disabled.
It hurt so much not just to be disbelieved, but to be doubly rejected about what we were not believed about.
The Lie of Inspiration Porn
Finally and perhaps most problematic were the people who listened to us when we pointed out that cancer can be considered a disability according to the Americans with Disabilities Act.
Those people then adopted him as some kind of inspiration porn icon. It wasn’t limited to the standard “he was being awesome while having cancer, what’s your problem?”
They used the lens of inspiration to make his accomplishments seem like noble sacrifices.
And then it had to sink to the level of why more Black people couldn’t be like him. As if somehow his art wasn’t for himself, or for his people, or even for all people. But rather an example of the good Negro, doing his best to make white people comfortable.
And yet a simple look at the roles he played during the years he was said to have known he had colon cancer would tell another story.
These aren’t all the lies. We must do better, not just in memory of Our King
Chadwick had to have been deliberately choosing his roles by them. If he wanted to leave us with a message of respectability politics, it seemed he would not have chosen the characters he represented.
He didn’t pick slavery biopics for his last years. He chose to portray important Black historical figures, or the loftiest representations of who our fictional heroes could be.
He was writing a love letter to us, his people, with his art.
Are we loving him back if we taint our reflection of his legacy’s end having learned nothing?
If we do nothing else in his memory, I hope we start to talk to each other, especially within the various Black communities, about the impact disability and specifically cancer as well as regular cancer screening is having on our community.
We must examine where we are and ask ourselves if we’re really going to attain any true liberation if some of us are left behind. We have to start having real and honest conversations, out in the open, about what is happening in the lives of Black disabled women and men.
I still miss him and mourn our Wakandan King, Chadwick Boseman, as if his passing was fresh. It took me almost two months to write this essay. I wanted to write a love letter to his memory and that of my sister-in-law, my cancer mentor, who died the very next morning.
It may always be fresh to me because I cannot mourn him properly.
Not while our various Black communities have the open wounds where the love of individual disabled and cancer patients lay, but disabled and cancer Black communities remain rejected and unloved.
Tinu Abayomi-Paul is a writer and a disabled entrepreneur who provides coaching services to other microbusiness owners.
After 20 years as an entrepreneur, 18 as a well-known marketing and Google expert, Tinu had an awakening. After being diagnosed with cancer, she had to take almost three years off building her business, due to having several chronic diseases prior to the cancer, which complicated her recovery.
Once safely on the other side, she realized other entrepreneurs, disabled and otherwise, could use the resources she developed to restart her life after cancer.
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