Welcome to the website of The National Black Disability Coalition (NBDC)


NBDC is the nation’s organization for all Black disabled people.  Membership and partners includes Black disabled organizations, disabled people, parents, family members, faith based, non-profits, and academic and policy leaders.

Founded in 1990, in response to the need for Black disabled people to organize around mutual concerns, NBDC is dedicated to examining and improving; community leadership, family inclusion, entrepreneurship, civil rights, service delivery systems, education and information and Black disabled identity and culture through the lenses of ableism and racism. Select here for welcome video.

Memorial Day Origin by Slaves

Although the exact origins of Memorial Day are disputed, the first observance of Memorial Day is thought to have taken place in April 1865, when a group of former slaves gathered at a Charleston, South Carolina, horse track turned Confederate prison where more than 250 Union soldiers had died. The bodies of soldiers buried in a mass grave were reinterred in individual graves on the site. On May 1, 1865, some 10,000 black Charleston residents, white missionaries, teachers, schoolchildren, and Union troops marched around the Planters’ Race Course, singing and carrying armfuls of roses.  

A Paradoxical History of Black Disease

by Cyrée Jarelle Johnson

Content notes: slavery, white supremacy, racism, genocide, violence, death

Just two months after the Civil War ended, freedmen began to die in droves from contagious diseases, such as cholera and smallpox. Their former slavers, however, attributed the high mortality of these diseases among those they had once traded as property to an inherent physical and moral inferiority. “Nothing on earth could make them wash,” asserted a tourist from Britain recounted in Marshall Scott Legan’s “Disease and the Freedmen in Mississippi during Reconstruction.” Initially, little concern was given to the fact that freedmen lived in densely populated portions of the city and without the means or plumbing to wash frequently—conditions engineered by the white powers that be. 

In the months that followed, a smallpox sick house was destroyed as it was built, likely due to the association of smallpox with black people. This left black-run organizations and the Freedman’s Bureau completely responsible for stopping the march of smallpox through black communities in the Eastern United States, Legan asserts. Since they could no longer own black people, they happily left us for dead. Legan notes that former slaveholders were “freed of the antebellum master-slave relationship in which the blacks had represented capital investment” and thus “expressed little concern for the health and welfare of the freedmen except when it posed a threat to their own.”

Black illness is treated as inevitable and attributed to some inherent racial inferiority. This attitude both evinces and encourages a lax, shrugging attitude towards black illness and death. If a disease, like smallpox, like COVID-19, is only affecting black people why not open the economy, why do anything to halt its progression, wonders non-black America. Meanwhile black people die in large numbers while white people are treated with care by medical providers and survive. 

As I write this, over 79,500 people have died of COVID-19 in the United States; by the time this article is published, the number will be far higher. The disease is spreading rapidly in cities known for their black culture: New York City, New Orleans, St. Louis. In each of these cities black people are dying in numbers disproportionate to our population as a whole. 

Now, as ever, once The President and his cadré of inepts learned that black people composed the majority of deaths the focus shifted from harm reduction to personal responsibility. “It’s very sad,” noted Dr. John Fauci during a press briefing in early April “there’s nothing we can do about it right now.” To him, it came down to “health disparities” and “comorbidities,” which we know to mean disabilities and chronic illnesses, such as asthma, diabetes, and heart disease. The Surgeon General asked black people to halt transmission of COVID-19 for those we love, saying “do it for granddaddy, do it for your big mama, do it for your Pop Pop…we need you to step up and stop the spread.” He also mentioned that handwashing was less common in cash-poor households than in those with higher incomes. 

He did not, however, mention that “cities in the United States, including Baltimore, Chicago, and Detroit, have seen thousands of water shutoffs resulting from unpaid bills. Residents have had to buy or “borrow” water while they were shut off, and here as in the rest of the world, expensive water results in compromised hygiene,” as Isha Ray did in her article “Handwashing in the Time of COVID-19.” Now, as in the time of smallpox, black people are burdened with stopping a disease that we did not create while the government ignores solutions that could maximize black access to essential resources and lessen the death count among black people. 

The government, like the loser that heads it, takes no responsibility for the way that they have created the conditions for COVID-19 to ravage the black community. They take no responsibility for the way that their ham-handed treatment of life sustaining medication caused a shortage in sick and chronically ill communities and will likely continue to do so. They fail to understand or nefariously pretend to fail to understand how the history of anti-black racial apartheid in the United States made black people sitting ducks for deadly viruses past and present. 

Like COVID-19, Systemic Lupus Erythematosus is a disease that disproportionately sickens and kills black people. Hydroxychloroquine, a medication used to stop flares—times when rheumatological diseases are active and cause the most damage—in Lupus, Rheumatoid Arthritis, and other rheumatological diseases, was touted as a miracle cure to COVID-19 without a clinical trial or an ounce of proof. Seemingly overnight, people with Lupus, like myself, were unable to access our prescriptions. 

Lupus is a disease in which the immune system attacks the body. Severe manifestations are relatively common and sometimes deadly. The disease is associated with death in black families and black culture. Among those who died of lupus complications are J. Dilla, Michael Jackson, and N’Deaye Ba. Many of these complications are caused by inflammation, and the deterioration of major organs because your body sees them as an invader. COVID-19 relies on inflammation to kill as well. In addition to respiratory failure, COVID-19 kills by creating inflammation that attacks major organs as well. It can cause strokes, heart attacks, and blood clots; it kills otherwise healthy people with cruel ease. 

So why then were a population already highly at risk to all of these maladies left without their medical standard of care, as Hydroxychloroquine is sometimes called for Lupus and RA? If the White House had suddenly become privy to medical inequity and the chronic illnesses it causes, why did they see fit to say the name of a drug that people rely upon on the nightly news until people stockpiled it in a panic like it was a 40-pack of toilet paper rolls? And most importantly, if our medication could cure, prevent, or even slow COVID-19, why was the solution to snatch sick people off of our regimens and redistribute it to others? Why were some of the most vulnerable people in this crisis deemed unfit to medication that may save our lives when we already had regulated prescription access?

Because of the assumption that black sick people can and should live without their medication if abled white people happen to need it. Drug manufacturers and insurance companies said as much. Kaiser Permanente noted that Hydroxychloroquine stayed in the body “for up to 40 days” as though that was a comfort. Doctors, and even dentists in some cases, wrote prescriptions for themselves and their families. People with Lupus and other rheumatological diseases watched their prescriptions go unfilled as pharmacies in New York and California mysteriously ran dry. Even though the President and his henchmen claimed to understand the role of disability and chronic illness in making COVID-19 more deadly, their actions evidenced that even when no additional assistance beyond filling existing prescriptions was needed we would not be spared from harm. 

We were deemed totally disposable, just a roadblock in the way of getting everyone else our meds. The removal of medication access seemed to signal that the medical industrial complex thought we would be just fine without our life sustaining medication. Yet the lack of care took the idea of black illness for granted, even knowing the environmental, social, and historical context from which it emerged, and elected us the ideal casualties of this disease. We were deemed enough to live without the medication that keeps us alive, yet inherently too sick to survive the latest plague and there’s nothing anyone can do about it: the paradox of black disease.  

The history of this ambivalence is as old as the black/white racial divide, stemming from white vacillation as to whether or not black people are superhumanly immune to disease, or subhuman and genetically helpless in the face of illness. A purported immunity to malaria and yellow fever among the peoples of West Africa was part of the driving forces of the Transatlantic slave trade. Black history in the United States is predicated on this dichotomy, created and enforced by whites to work black people to death as their property or leave us to die in conditional freedom. 

But this duality lives elsewhere, too. It’s the attitude that an unarmed black person should be shot dozens of times, but a white mass shooter should be run through the local Burger King drive-thru. It’s the same sentiment that believes black women have too many children, and watches them die giving birth. The system that frames us as engaging in “drug-seeking” behavior when we ask for pain medication is one that admits its belief that black illness is a given and the current systems of the United States bears no responsibility to treat us. It’s a disgusting, self-serving binary that views black people as unharmable when it wants to hurt us and as naturally “defective” when we cry out that we are hurt. 

At no single time in the history of the United States have black people been allowed to just be human: in need of medical care, vulnerable to harm, in want of nutritious food, warm clothing, and shelter fit for human beings. The only options non-black people give us is the role of superhuman monstrosity impervious to sickness and bullets, or a subhuman animal euthanized at the first hint of illness, and the historical treatment of black contagious disease reflects this reality. 

ABOUT 

Cyrée Jarelle Johnson, a black transmasculine person with medium brown skin, a septum ring, and a big smile stands in front of a hydrangea bush that is behind a white picket fence on a sunny day. It’s so bright his eyes have squinted closed. He is wearing black shortalls, a gold triangle necklace, and a silky, floral black shirt rolled up to the elbows. Photo by J.D. Stokely

Cyrée Jarelle Johnson, a black transmasculine person with medium brown skin, a septum ring, and a big smile stands in front of a hydrangea bush that is behind a white picket fence on a sunny day. It’s so bright his eyes have squinted closed. He is wearing black shortalls, a gold triangle necklace, and a silky, floral black shirt rolled up to the elbows. Photo by J.D. Stokely

Cyrée Jarelle Johnson is a librarian and writer from Piscataway, New Jersey. He holds a MS in Library and Information Science from Drexel University and an MFA in Creative Writing from Columbia University. He is the author of two books, SLINGSHOT (2019) and How Greek Immigrants Made America Home (2018). 

Cyrée’s work has appeared in The New York Times, Boston Review, Rewire News, The Root, and MOTHERBOARD/Vice. He has given speeches and lectures at The White House, TEDxColumbia University, Brown University, The University of Pennsylvania, community organizations, churches, festivals, and conferences throughout the United States.

His work has been supported by Davis Putter Scholarship Fund, Astraea Foundation, Leeway Foundation, Disabled Writers, Culture/Strike, and the donations of countless community members who believe in what he does.

Website: http://cyreejarellejohnson.com/

Opinion: Let’s make a sidewalk plan happen

By Jane Dunhamn

Fayetteville Observer, Posted May 14, 2020 at 3:02 PM

Recently I viewed the Fayetteville City Council meeting of April 20. I am greatly concerned about the issue of public safety for the implementation of sidewalks for the city of Fayetteville.

On several occasions Councilwoman Tisha Waddell expressed the importance of sidewalks and the need to explore funding opportunities aside from bonds.

I agree with Councilwoman Waddell, and I move a step further in that the language should be for disabled people it is imperative that the city have a plan and a timeline to complete sidewalks for all streets.

Disabled people’s lives are at risk whenever they take to the streets. It is important to note that most disabled people do not have the choice to drive a car and walking is their only option.

This is especially true for people who use mobility equipment and people who are blind. According to a study by Georgetown University “about 528 wheelchair users were killed in road traffic collisions between 2006 and 2012. This equates to a pedestrian wheelchair user’s risk of death being about 36% higher than the rest of the population.” Understanding people who use mobility equipment cannot squeeze over when a vehicle comes too close because the equipment takes up a large space. This is very different for those who walk who can squeeze to the side of the road when an oncoming vehicle comes too close.

For people who are blind and visually impaired, it is obvious that they cannot see any potential dangers coming at them.

The social model of disability identifies systemic barriers, negative attitudes and exclusion by society, which means society is the main contributory factor in disabling people. While physical, sensory, intellectual or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences.

Georgetown University findings concluded: “underscore the need for policy-makers and planners to fully incorporate disability accommodations into pedestrian infrastructure and for persons who use wheelchairs – and others with disabilities – to remain a salient population when road safety interventions are designed.”

The view of most at the City Council meeting was to wait. We cannot wait any longer, not one day. It is time the city has a plan and commitment to implement sidewalks in all of Fayetteville. “Wanting” to make it happen is very different from a proactive commitment. Let’s be creative and “make” a plan happen.

Jane Dunhamn is a Fayetteville resident and a parent of an adult daughter with significant impairments. She is also the director of the National Black Disability Coalition. She has worked in a professional capacity in disability related fields for federal, state and local government for 30 years.

Pages

Subscribe to National Black Disability Coalition RSS