AfroSapiophile
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AfroSapiophile

Black Disability History, Vol. II: Reclaiming The Black Disabled Experience

Florence Flo Jo Griffith-Joyner stares at the camera, smiling and showing off her colorful long, red nails. She has an Afro
Flo Jo showing off her jewelry, her long, red six-inch nails, while wearing a USA tracksuit and sporting an Afro.

This is the second volume of the series I started on the subject of Disability and its relationship with the History, Narrative, and Memory of Blackness. I’ve spent much time scouring for additional entries to feature in this series, but it’s far from complete. The method to my process requires me to adopt a critical look at the things we’ve come to validate as worthy of retelling, in part due to how I view an abled world through the lens of Disability. Thus, how the public views the most common examples of Black and Disabled life are not always — things I interpret the same.

I’ve had to find stories that not only celebrate our History, but also Memories that remind us of where we’ve come from and how far we have to go. Some of these stories really resonate because they’re persistent issues we keep raising that have yet to change despite the climate being different. Some are still romanticized despite being incredibly tragic and terrible in reality. Highlighting these injustices is just as necessary as highlighting the positives in a culture that normalizes Inspiration Porn and/or Others the disabled and/or neurodiverse.

Continuing, these stories once again aren’t uniformly saccharine; some are genuinely-depressing or somber experiences. Read at your own discretion, and don’t shy away from investigating Black and Disabled History for yourself.

Now, we’ll continue with ten more Narratives I’ve compiled thus far.

Hydeia Broadbent

Hydeia poses  in a granite-print dress while smiling with a silver purse. Names of event sponsors are on the wall behind her.
Photo of AIDS and HIV Awareness advocate Hydeia Broadbent, posing in a silver and black granite printed dress while smiling. She has a matching silver purse in her hands. She was born with HIV and later developed AIDS. Photo Credit: Jemal Countess/Getty Images North America

When we think of HIV/AIDS, we may or may not think of the stereotypes associated with the illness, the typical images #FFFFFF people have conjured about the Mother continent, Tyler Perry’s homophobic melodrama, and/or statistics. Hydeia Broadbent grew up in a time where there were and in some cases remain incredible misunderstandings and stigmas about people with the illness, and they cut across age.

Hydeia Broadbent was a foster girl later discovered to have been born with HIV. With it came a host of health-related problems that led doctors to predict that she’d likely die fairly young. While she obviously didn’t, her HIV worsened, becoming AIDS. A chance encounter with the founder of the Pediatric AIDS Foundation changed Broadbent’s life, and ever since she was six, she’s been a self-identified activist pushing for change socially.

Broadbent’s major break came through special television appearances, from 20/20 to Good Morning America, and even on Oprah’s talkshow. Her advocacy and activism for HIV and AIDS Awareness and Prevention also resulted in features that graced the NY Times, People, Essence, and numerous other publications, as well as radio appearances, notably as a guest on the Tom Joyner Morning Show.

In the years since her activism began, Broadbent has received numerous awards highlighting her social work, including a Red Cross Spirit Award and spots on the Top 100 lists of influential African-Americans in both The Root and Ebony. These accomplishments reflect the extensive national and international activism Broadbent’s done for decades and continues to, working with several foundations to deliver lectures on the subject, including at universities like Duke, Spelman, UCLA, and Howard. Check out her work here.

Donald Galloway

Galloway practices ASL with his daughter. He’s in a white suit, while she wears dark clothes. His service dog is beside him.
Donald Galloway stands practicing ASL with his daughter Makini, wearing an off-white suit. His daughter wears dark pants and a shirt, and Galloway’s service dog Keegan stands beside him.

Donald Galloway was born in Washington, D.C. and became disabled during his adolescence when he was hit in the eye with a bow and arrow; a lack of proper medical treatment led to nerve damage and the loss of sight in his other eye also. He turned to folk singing to compensate, but eventually moved to California and pursued Social Work, earning his Bachelor’s in ’67 and Master’s in ’69. Those accomplishments wouldn’t be his first in disability-related work, however. At his alma mater, Galloway was VP of the Junior NAACP branch, as well as a Junior member of the Nat’l Federation of the Blind.

Galloway’s activism reached its next milestone during his initial forays into the Independent Living Movement when he met Ed Roberts, who’s now considered its Patriarch. Galloway soon became the director of Blind services — even Lead of the CIL’s Black Caucus — and spared no time advocating for the movement to fundamentally change its overwhelmingly white members to reflect a movement inclusive of other races and cultural experiences.

Galloway’s time at the CIL also included projects that he participated in with the likes of Joyce Ardell Jackson, and reflected the growing network of support and communal-determination that he and his disabled peers established with each other. Galloway continued his work in 1978 when he was made the Director of Jamaica’s Peace Corps; he’d later reach a settlement when an administrative position was denied to him by Foreign Service on the basis of his disability.

Undeterred after his success against the Foreign Service, Galloway returned to D.C. and directed a chapter of the CIL, as well as eventually took on other leadership roles that were all disability-related (manager of D.C.’s Dep’t of Housing and Community Development disability affairs branch, and an eventual program coordinator for the ADA). Decades of experience prepared him for another major legal dispute he took on.

In 1991, Galloway was summoned to jury duty but promptly denied when they saw him being escorted alongside his service dog. Claiming he’d be incapable of performing all the duties of a juror due to his disability, Galloway famously responded:

“I don’t have to see a gun. I could feel the gun or have someone describe it to me. They are making the assumption that I can’t perceive or make judgments.”

Galloway soon won his case in ’93 and Blind jurors could no longer be ruled out automatically from the jury selection process in D.C. He, alike his peers, was a fighter his entire life, combining his experiences as someone Black and Disabled to navigate the complexities of society in his Social Work. He passed away in 2011, just a few years after he’d retired.

Dr. Sylvia Walker

Dr. Walker presents an award to Thomas McKeithan with Jay Rochlin watching. They all have glasses on and wear formal suits.
Dr. Sylvia Walker, then-Director of HURTC at Howard University, is congratulating Thomas McKeithan for achievement in an essay competition sponsored by them. To the far-left of the photo, and looking over McKeithan, is Jay Rochlin, then-excecutive director of PCEPD, wearing a formal suit. McKeithan stands in-between Rochlin and Dr. Walker in a dark suit with shades on as he accepts the award — on a plaque — from Dr. Walker. She is wearing glasses also and has a large, circular pin — likely used to identify her during the event — on her business suit.

Dr. Sylvia Walker was a Blind and Black activist born in NYC, who had an insatiable desire to push for disability rights, evidenced best by more than a decade of experience in scholarship (including four degrees) that culminated into a position at Howard University. Dr. Walker’s pursuits didn’t end at teaching, however; one of Dr. Walker’s key expertise was in scholarly research as it pertained to accessibility for the disabled, especially non-white disabled folks. Her pursuit led her to found what is now-known as the Howard Uni. Center for Disability and Socioeconomic Policy Studies in ’75, which she’d remain director of throughout her life.

Dr. Walker’s best known for her scholarship, which routinely centered the neglected demographics within disability discourse. Many of her writings and research — published in journals, etc. — specialized in creating a praxis centered around accessibility on a legislative level, including vocational rehabilitation, services tailored to the disabled, and educational programs.

Dr. Walker’s work in terms of addressing the educational gaps that the disabled experience are vital because it was very common and, as Mills vs. Board of Education of District of Columbia illustrated, an uncontested policy for disabled students to be neglected sufficient educational opportunities, based entirely upon ableist biases. Much of the policies Dr. Walker championed throughout her research and scholarship also contributed substantially to the legislative framework that would shape laws essential to Disability rights contemporaneously, including the ADA.

Dr. Walker continued her work championing rights for the disabled when Clinton appointed her Vice-Chair of the PCEPD, and she continued trailblazing by founding the American Association of People with Disabilities alongside several other activists, from Whitlock Dart Jr. to Paul Hearne. Their foundation became an organization devoted specifically to uplifting and empowering the disabled in all sectors of society.

Dr. Walker eventually received the Keeper of the Flame award by the NAACP, based on how steadfast she was in ensuring her disability scholarship and policy research explicitly included Black and other non-white disabled communities. She passed in 2004.

Mills vs. Board of Education of District of Columbia

An obituary from Sphinx magazine for Judge Joseph C. Waddy, who presided over the landmark Mills lawsuit.
An obit for Joseph C. Waddy found in Sphinx Magazine, the judge who oversaw the landmark case of “Mills vs. Board of Education of District of Columbia”. Waddy’s photo is to the right of a photo of Brother Toney V. Swinton.

This legal case was included precisely because it illustrates that the fight for Disability rights, especially for the Black and Disabled and/or Neurodiverse transcends age limits. It conveys how pervasively Systemic Ableism devalued us collectively, and especially asks us to reconsider popular assumptions that we have when it comes to educational justice and accessibility in school rights.

So, we’re going to start with seven Disabled and/or Neurodiverse Black youth by the names of Peter Mills, Duane Blacksheare, George Liddell Jr., Steven Gaston, Michael Williams, Janice King, and Jerome James.

Peter Mills was 12 and a ward of D.C. at Junior Village. Officials alleged Peter had “behavioral problems” and used them to deny him public and/or private education opportunities in enrollment. Myriad kids like him were also denied hearings and did not have their statuses reviewed. All were dependents.

Duane Blacksheare was 13 and committed to St. Elizabeth’s Hospital, first excluded from public education in the third grade — 1967 in his case. He was also cited as a child with a “behavior” problem yet denied a hearing and review of his status. His mother fought tooth and nail for him to no avail until his case broke mainstream news publications. Even still, he wasn’t given the necessary assistance he needed to actually catch up and assess his skills, ultimately neglected from grants and left out of public education enrollment.

George Liddell Jr. was 8 and classified as developmentally-disabled; he thus wasn’t allowed to attend public schools because of his disability as they wouldn’t accommodate him. Evidence clearly-showed, in spite of their ableist assumptions, that he’d benefit from said-education but he was still denied a proper hearing and review as well as excluded like countless other disabled children were. Also like countless other children, his mother was stuck waiting on approval for tuition grants that never came.

Steven Gaston was 8 and lived with his mother in Northeastern Washington. His mother Ina couldn’t afford a private education for him, and he’d been excluded from his elementary school — Taylor — since the Fifth grade. Gaston had a brain injury and was prone to wandering, but like the other children, had not been given a hearing or adequate review. Public-education excluded him and the only private school willing to accept him did so with the caveat that his parents pay the entirety of his tuition ahead of time. His parents also were stuck waiting for grants that would assist them financially.

Michael Williams was 16, also committed to St. Elizabeth’s Hospital, and in his case was incapable of affording private school. He was Epileptic and believed to be developmentally-disabled to an extent as well. Sharpe Health school had completely neglected him due to the number of school days he’d missed, as well as his condition. His mother also fought to support him and with her advocacy secured a physician to demonstrate that Michael was capable of attending public school, but he remained excluded without any review of his status or hearing.

Janice King was 13 and dealt with several disabilities — including a right hemiplegia — that were used to deny her a right to public education. As was typical, no formal hearing or review was done assessing her whatsoever and no public schools sought to accommodate her either. Her father Andrew also advocated alongside her mother but was unable to secure her the right to attend public school.

Jerome James was 12 and lived with his mother Mary in Northwestern Washington, D.C. He was developmentally-disabled and excluded from public education as a result. No hearing or review was done regarding him, and as was literally the case with every parent of these plaintiffs, none were able to secure tuition grants and were indefinitely-placed on waiting lists while they were essentially-barred from being able to attend public school.

I imagine you see a pattern here.

One estimate put the number of disabled and/or neurodiverse youth that were being denied special accommodations and services in public school educations writ-large to ~18,000 out of about 22,000 est. disabled youth. In one year alone — the 1971–72 school year — a report determined more than 12,000 had been excluded. Labeling them “exceptional” made this systemically possible, and all seven of the plaintiffs in this case were labeled as such.

These seven Black and Disabled students sued with their reps not only for themselves, but on behalf of literally thousands of children with myriad disabilities, ranging from developmental ones to behavioral and/or health issues, even to blindness and/or deafness. All of them were essentially being denied access to adequate public educations and funding, and this was despite assurances that they’d be recommended and/or were explicitly told by school authorities that they’d be admitted to these public schools, all of which were demonstrated to be empty promises. When none of the seven were placed on the Fall term of 1971’s school year and neglected yet again by the Board of Education, they filed a lawsuit on the 24th of September, 1971. Hence “Mills vs. Board of Education of D.C.” was born.

By Dec 20, 1971, the students had essentially won and gotten the Board to admit to its failures and wrongdoings, and by the 1st of August 1972 after continued resistance by the Board of Education, the courts had validated them; Judge Joseph C. Waddy, who presided over the case, supported the seven and asserted that they and the thousands of students they represented had a constitutional right to public education no matter their disability, ordering the Board of Education to unconditionally accommodate disabled children. Other measures he’d implement would eventually shape policies for the legal rights of disabled and/or neurodiverse students. Ultimately, this ruling is yet another example of a major case that necessitated legislation offering protections and services against ableist discrimination.

I want to stress how important it is to see that youth as young as eight fucking years old were fighting for Disability rights, especially Black and Disabled and/or Neurodiverse youth back then. Ableism doesn’t have an age-limit. People would rather talk about not wanting their able-bodied kids to be treated like neurodiverse and disabled ones in schooling environments rather than actually advocate for equal treatment and access to educational opportunities. Even despite what we’re learning and now know about disabilities and neurodiversity, these mentalities persist.

It’s honestly my hope with this story that our community will begin to re-examine how we define these pedagogical issues because we rightfully focus on those that counter prevailing racist narratives — emphasizing Black Excellence in Education or praising the next student to earn dozens of full-scholarships — but also sometimes wrongfully perpetuate others that reinforce systemic biases, and that needs to change. One’s right to an education that isn’t defined by neurotypical standards is just as important in the push for better educational resources in our community, regardless of whether or not a child is considered “gifted” or the inverse. Blacksheare, Liddell Jr., James, King, Mills, Gaston, and Williams taught us this.

Sojourner Truth

Truth sits posed while seated with a white shawl over her dress and a headwrap, with glasses on.
Sojourner Truth, staring at the camera with a white shawl and matching headwrap covering her dress, which has cuffs with polka dots. She wears glasses. Her right hand, which was disabled, is concealed.

One of the most disappointing elements of traditional Narratives of Black History, in my opinion, is how often figures we look up to had their disabilities down-played or erased outright. We’ve seen this with characters commonly associated with radical liberation, such as Denmark Vesey, and this was even a common problem in representations of Harriet Tubman’s historical portrayals. Even today, the greatest controversy concerning the recent film documenting Tubman’s life was not centered around the systemic practice of able-bodied actors and actresses portraying disabled characters, especially Black and other non-white historical figures with disabilities. Yet another example of this erasure is the public’s characterization of none other than Sojourner Truth, although how she chose to represent herself personally is nuanced and an example of an agency we should respect when examining what we know about her life in light of the society she lived in. This Ableist erasure by Historians also continues a long tradition of wanton disregard for her capabilities, illustrated best by the existence of multiple versions of her most famous speech.

That said, Sojourner Truth was also disabled, with an impaired right hand that was often partially-covered in photographs or positioned on a cane or in action — often made to appear as though she were knitting — to hide the disfigurement. She was also neurodiverse, these things in part caused by what she experienced during her enslavement; having grown up speaking only Dutch, when she was sold off to a family who only spoke English, Truth couldn’t properly understand them and was severely abused as a result of it. She’d wrestle with a developmental disability that left her illiterate, often making the words she read appear jumbled and unpronounceable.

Truth lived during a period that often promoted what was known as a “cult of true womanhood”, characterized by extreme norms of femininity that also incorporated racialist thinking predicated on able-bodiedness. Truth’s tall frame, dark skin, work ethic, and husky speech were often weaponized against her, in one case resulting in a challenge from a doctor to prove she was actually a woman and not, as many assumed of her, a Black man in disguise; Black women were not considered able to possess the “virtuous” qualities associated with femininity. In combination with her disability, Truth faced multiple systemic obstacles.

It’s thought that Truth may have downplayed her physical impairment precisely due to the biases and expectations of the audiences she was immersed within throughout her activist travels. Civil Rights Advocacy in Feminism and Black liberation in the face of Patriarchal White Supremacy often meant the invalidation of racist ideology by debunking popular notions of inhumanity and inferiority Black men and women were thought to possess. Other activists, unfortunately did not translate this into an approach that accommodated the Disabled who shared these identities; in Truth’s case, a Black and Disabled woman with a visible impairment.

Truth became a spokesperson much larger than herself and implicitly knew this based on what was recorded of her; concealing her disability and by extension her experience as a disabled Black woman may have given her what she felt was the agency necessary to control the narratives surrounding what Black womanhood could be and represent to the public, and she delivered possibly hundreds of speeches in her time. Virtually every physical representation of her she cultivated in these instances is one carefully-tailored to portray her as stoic and capable of withstanding prevailing assumptions about her Blackness and Womanhood, at the price of masking what was also an indelible part of her life with stoic subtlety.

Taken then, it was an obvious survival tactic that Truth employed as a Black and Disabled woman thrust into the public stage of abolition and Black women’s suffrage amidst misogynoir. Taken contemporaneously, the choice of many historians of Black History to ignore this aspect of her life negates the sacrifices she had to make in carving a destiny for herself and other Black women in a world where Black and Disabled women were denied the opportunities that are now becoming possible, even typified in the speech she is renowned for, of which there are multiple versions — as well as one rife with historical errors and questionable diction that has come to be seen as the sole authoritative source.

“I am a Woman’s Rights,” Truth reportedly declared to her audience in an oft-overlooked version of her speech at Akron. It’s high-time the public acknowledges the rights she was otherwise coerced to mask due to expectations of able-bodiedness so that we can ensure the countless Black and Disabled women who exist today will be able to exist openly on their own terms if they wish to, rather than privately on them.

Horace Pippin

A self-portrait oil painting of Horace Pippin, staring in a dark suit with a striped brown and yellow tie.
A self-portrait oil painting of Horace Pippin, a Black and Disabled artist and former Harlem Hellfighter. In the painting, he stares while wearing a dark suit with a striped brown and yellow tie.

Horace Pippin was a self-taught Black and Disabled painter who lost most of the function of his right arm during his time as a Harlem Hellfighter. His experiences would eventually lead him to pioneer a movement of artistic expression that interrogated the theatre of war and other major societal issues through his aesthetic themes. Pippin, however, had possessed an interest in the artistic prior to his fateful injury.

Pippin was born in West Chester, Pennsylvania in 1888, later moving to Goshen and attending a segregated school; his grandparents were Freedmen and his parents resigned to take on low-income domestic jobs. As a result, Pippin, who loved to illustrate things and even color spelling words, was unable to get access to otherwise costly art supplies.

Pippin’s break came when he won a magazine’s art contest and received a box of crayons, paint, and brushes as a reward. He’d continue to develop his artistic skills on his own, although his academic career was cut short; Pippin eventually dropped out of school to support his mother, who’d fallen ill. Pippin’s mother eventually passed away years later, and he thus spent the rest of the teenage years shuffling different jobs, from handling picture crating and furniture, to work as a factory iron smelter.

In 1917, Pippin enlisted in the military and fought in World War I under the 369th Infantry, otherwise known as the Harlem Hellfighters; his service while in France led to him receiving the Croix de Guerre, and also to an injury from a sniper round that crippled his right arm and hand. Pippin eventually left the military, married his wife Jennie, and returned to West Chester. His artistic passion had never subsided in spite of new obstacles he faced from essentially losing the independent function of his right hand; the onset of arthritis complicated it further.

Nonetheless, experiences from Pippin’s time serving in war also lingered with him and were a prime catalyst for his persistence. Even while in the military, he chronicled his wartime experiences in diaries that he also sketched in, from images of soldiers on routine marches to war trenches. Pippin’s desire to creatively-express his feelings and ideas led to him discovering the technique of pyrography as he experimented with other mediums: using wooden panels as a base while he drew on the surface with a hot poker. He produced multiple pyrographic works during this period, but ultimately wanted to return to oil painting.

Pippin spent the equivalent of three years teaching himself how to paint again by using his left hand to guide his right hand until he finished his first oil painting after his injury, based upon his memories of his time at war. The new process of guided painting with oil, while taxing, proved to be a therapeutic experience that earned him acclaim from curators — including a showing of four of his paintings by MOMA — culminating in his formal artistic training at the Barnes Foundation.

Pippin’s genre paintings constantly reinforced themes of his experiences with war and time as a soldier- notably trench warfare — as well as his personal interpretations of religion, Black domestic life, historical events, abolition, and racism, although he also enjoyed landscape painting. He was the first Black artist to have paintings chosen by the Art Association in West Chester, receiving praise from Christian Brinton, its president at the time. Pippin produced 75 additional paintings prior to passing away, hosting several solo exhibitions while numerous institutes and museums of art acquired and/or featured his paintings, from the Whitney Museum to the National Gallery of Art, and even London’s Tate Gallery. He was 58.

Florence “Flo Jo” Griffith-Joyner

Flo Jo waves at the crowd while she bears the US flag in her red sprinting uniform.
Flo Jo waving at a crowd in her red and white track uniform while she holds a flagpole with the U.S. Flag.

Florence “Flo Jo” Griffith-Joyner was a Black track athlete who rose to fame after a career as a modestly successful sprinter and set world records in the 100 and 200 meter dash that haven’t been topped since she competed. As her later years would reveal, she was also Disabled, suffering from Epilepsy — she reportedly had tonic-clonic seizures — and eventually succumbed to SUDEP.

Mired in controversy for her incredible increase in performance, the Epilepsy community saw something different in her: a woman whose tragedy put a public face to a persistent threat that continues to affect us.

Griffith-Joyner was born in California and was a regular in track and field, training since her childhood. She’d even dominate the Jesse Owens National Youth Games by snagging victories twice, eventually setting records in high school competitions as well. Her athletic pursuits continued when she reached the collegiate level, participating at both of the colleges she attended (CSUN and UCLA), eventually graduating with a psychology degree. She first qualified for the Olympics while in college, in fact — specifically for the 100 — but wouldn’t officially participate beyond the trials until several years later.

Griffith-Joyner managed to secure a silver medal in the 200 meter dash; the next time she participated, she’d cement her status as the fastest woman of all time in the 100 meter sprint, annihilating previous records — notably Evelyn Ashford’s — and securing several gold medals; she’d also score a record in the 200. Griffith-Joyner’s flair for style and fashion, extended as far back as her school years — she’d even gotten her teammates to wear catsuits.

Even while performing at the Olympics, Griffith-Joyner distinguished herself with colorful nails of varying lengths, patterns, and vivid color schemes, custom-designed uniforms, varying hair styles, and even wore jewelry. Her sudden retirement was used to justify suspicions of illegal steroid and growth hormone abuse that gained traction eventually once she became a household sensation, but her signature aesthetic and personality made her decision to retire to pursue new opportunities in entrepreneurship hardly as suspicious as initially-suggested. One of her times was hypothesized to have been skewed by wind assistance.

Griffith-Joyner’s dramatic improvement in physical performance — and the growing awareness of doping among athletes — led to persistent claims and rumors that she had also taken illegal steroids, despite being tested multiple times while she performed. She attributed her newfound-skill to a new training regiment her husband had placed her on after becoming her private coach and instead managed to focus on other endeavors once the numerous tests she’d taken ended most of the controversy. Griffith-Joyner — now popularly known as “Flo Jo” for her speed — soldiered on, securing business deals that saw the creation of a doll in her likeness, a stint designing basketball uniforms, and even time-served as the co-chair of the President’s Council on Physical Fitness.

Soon, Griffith-Joyner eventually planned to return to the field to attempt to master the 400 to become a triple gold medalist, but an unexpected injury prevented it. Further misfortune would strike when she reportedly began having tonic-clonic seizures, believed to have been caused by a brain tumor; Griffith-Joyner eventually passed away in her sleep due to a seizure. Her unexpected death took the sports world by surprise. Her passing at 38 also brought one of the health risks that Epileptics deal with to the forefront: SUDEP, or Sudden Unexpected Death by Epilepsy.

SUDEP is a risk associated with the neurological illness which, despite a lot of general information about it, is still very misunderstood. It happens whenever a person with a history of seizures later dies without any clear reason or cause, and the most common time it happens is at night, often while a person is sleeping, but it can happen at other moments. No one knows what causes it at all, although as in Griffith-Joyner’s case, SUDEP can be related to seizures.

There are different risk factors that depend on the types of seizures a person has — over 40 documented known types in general. Some, like GTC — generalized tonic clonic — seizures (the type that Griffith-Joyner had) increase the risk of SUDEP occurring significantly if a person has multiple of them within a year. Risk factors in this case can increase to as much as 1 in 50 people.

Others, like absence seizures, don’t increase the risk of it happening. Uncontrolled seizures and other factors can also increase the risk of it happening. However, 1 in 1000 people with Epilepsy are still at risk of experiencing SUDEP and people who have Epilepsy yet rarely have seizures have also died from it. I personally knew an older man with three sons — two of which died from SUDEP well into their forties. I’m also at risk of them, although not as high as Griffith-Joyner was due to me not having GTCs.

Because of the elusive nature of SUDEP, whenever celebrities with Epilepsy have reportedly died from it, the often-ignorant public’s misunderstandings of seizures and SUDEP in general have often-elicited a range of emotions depending upon how that person was viewed. As a result, Griffith-Joyner’s story is important in Black Disability History in that it unveiled yet another prevailing stigma and misunderstanding that would arise in conjunction with stubborn rumors about her supposedly doping: that seizures in Epileptics were intricately connected with drug abuse.

Many people in the sports community and other skeptics of her talent spread rumors that Griffith-Joyner’s death was due to steroid abuse, causing her heart to fail; a stigma that I’ve personally observed that continues to thrive in other fashions, although the drugs mentioned in these conspiracies vary wildly. Even despite the investigation of Epilepsy experts in testing discounting any ties to steroid abuse as a cause of her seizures, the myth continues.

Ultimately, this Narrative isn’t geared toward the ablebodied; it’s both a celebration of a dynamic life cut short by an illness millions suffer from and a reminder of a brilliant, fearless Black and Disabled woman whose legacy is gradually being reclaimed. It highlights a constant battle for greater awareness of SUDEP and other issues related to Epilepsy as we push for more research into this elusive neurological disorder and treatments for it.

Cacsmy “Mama Cax” Brutus

Mama Cax stands with shades on outside on a sidewalk, posed with her crutches and no prosthetic leg in a polka-dotted dress.
Mama Cax stands with shades outside on a sidewalk, posed with her crutches and no prosthetic leg. She is wearing a polka-dotted dress.

Cacsmy “Mama Cax” Brutus was a Disabled Ayisyen-American model and activist, renowned for carving new territory for Black and other non-white Disabled women in the fashion industry. She regularly wore a prosthetic during her shoots, often decorated with covers she designed personally, to force the Body Positivity Movement to include representations of disabled women and expand notions of beauty so that they fought against normalizing able-bodiedness as an ideal.

Cax was born in Brooklyn, but spent her childhood living in Montreal and Ayiti, later being diagnosed with osteosarcoma and lung carcinoma in her teens; additional complications led to her right leg being amputated. Afterward, Cax spent many years concealing her prosthetic leg as she wrestled with her self image.

Nonetheless, Cax endured and learned adaptive sports, relearning how to swim as well as play wheelchair basketball. Cax later continued her academic studies until she earned a Master’s in International Relations while employed at the NYC Mayor’s Office.

Initially, Cax had not thought of modeling as more than a hobby and spent most of her time blogging, until an unexpected makeup campaign she’d secured for Wet n’ Wild inspired her to pursue modeling seriously by joining an agency. Myriad experiences Cax had throughout her early modeling career often dealt with stigmas not only about her size and Blackness, but also her disability. Cax repeatedly found herself challenging the lack of accessibility many agencies possessed, as well as advocating adaptive fashion while exploring her own unique aesthetic that not only included the vividly-decorated prosthetic she wore, but also shoots where she used no prosthetic at all and used crutches.

Cax eventually modeled for several agencies, from JAG to ASOS, Hilfiger, and Olay, and regularly blogged about her experiences from the experience of a model who was a Black and Disabled woman. High profile events like Chromat’s Spring show gave her the chance to unapologetically command the runway; Cax also modeled with other disabled models, urging her audience to re-examine their biases when it came to how they perceived bodily acceptance, agency, and disability:

“Body positivity [is] not only [about] embracing yourself and your body’s journey but learning that if your embracement of bodies does not include ALL BODIES it is not body positive.”

By the time that Cax unexpectedly passed away — due to complications with blood clots after an extended period of hospitalization in London — she had dramatically contributed to normalizing the inclusion of the Disabled in the fashion industry, especially as adaptive fashion that accommodated all body-types arose with the next generation of fashion designers. She not only became an international advocate for inclusion — going so far as to speak at the UN — but also pushed back against the toxic effects of Inspiration Porn and admonished her able-bodied audience to value all the choices that those with disabilities made. She was 30.

Relf vs. Weinberger

Mary Alice and Minnie Lee Relf sit on a porch, smiling. One is dressed in white, the other in a colorful blue shirt.
Mary Alice and Minnie are pictured seated in front of a window outside.

This case I’ve decided to feature for my coverage of #BlackDisabilityHistory details the insidious practice of eugenics that targeted the Disabled, especially nonwhites and by extension Black folks with disabilities or whom were Neurodiverse. This story, alike that of Mills vs. Board of Education of D.C. and even the numerous other stories I’ve shared further illustrate how intertwined Ableism can be with Systemic Racism and Sexism and why not viewing them in separate vaccuums is critical.

Relf vs. Weinberger concerns the developmentally-disabled daughters of Lonnie and Minnie Relf, the two youngest of six children. Mary Alice was 14, while Minnie Lee was 12, and their parents were illiterate farmhands; Lonnie himself had a physical impairment also. As a result, the family depended upon welfare.

Eventually, the Alabama Community Action Program, otherwise known as CAP and based in Montgomery, sent nurses to the family under the premise that they’d be assisting the the Relfs by offering them the chance to admit their daughters into a hospital research program receiving experimental birth control shots for the drug Depo-Provera. In reality, interest in the Relf’s daughters was predicated on racist and ableist ideology of Eugenics, deeming Lonnie and Minnie’s daughters undesirables who weren’t fit to have children. Without completely understanding the gravity of what the CAP’s nurses offered to them due to their illiteracy, the Relfs gave them permission by signature.

An unexpected development linking the Depo-Provera shots to cancer in animal tests led to the end of these trials, but not the injustices. Both Mary Alice and Minnie Lee were sterilized, notably by a program that used federal resources — in this case, sanctioned by H.E.W. Even their daughter Katie Relf was experimented on, given an IUD without her consent that led to her having a miscarriage; this was only discovered by her parents afterward. Both Lonnie and Minnie then enlisted the help of the SPLC and sued the Secretary of H.E.W. (Caspar Weinberger) in a case that would unveil a massive federally-funded sterilization policy.

Judge Gerhard Gesell, who presided over the case, found that more than 100,000 impoverished women were being sterilized annually through H.E.W.’s policies, including many Disabled and/or Neurodiverse women; approximately half were Black women. Doctors often weaponized the authority they possessed to coerce women into participating by threatening to remove welfare benefits they desperately depended upon. In other cases, doctors refused to perform deliveries or even abortions unless the women targeted agreed to these sterilization procedures. The SPLC found that the levels of sterilization in fact rivaled policies that the Nazis had once used.

Relf vs. Weinberger’s landmark ruling established informed consent requirements and banned the usage of federal funding for sterilizations, as well as the use of duress and coercion — by depriving women welfare benefits and other services if they refused — to pressure them into complying. Attempts by H.E.W. to appeal the ruling were ultimately dismissed, dealing a massive blow to the state-sanctioned eugenics movement — over 30 states incorporated laws permitting them.

Relf vs. Weinberger, represents an important part of Black and Disabled History, in that this chance lawsuit ultimately was the culmination of decades of racist policies that overwhelmingly targeted nonwhites, especially Black folk, and by extension many who also possessed disabilities or were Neurodiverse themselves. White women — mainly the able-bodied middle class — were overwhelmingly discouraged from many of the policies — sterilization being the most obvious example — in contrast to their Black and Brown counterparts, for whom the procedure was viewed as necessary, if not compulsory to “improving” the collective gene pool. In a time where women’s rights are still challenged, especially those of the Disabled and/or Neurodiverse, it’s highly important to also focus on these intersections of Race, Sexism, and Ableism that persist and have led to marginalized women becoming especially vulnerable to these injustices to constructively dismantle Systemic Ableism.

Reverend Calvin Peterson

Rev. Peterson is wearing shades and smiling in a wheelchair. He’s in a blue-and-white dashiki outfit, with a matching kufi.
Black and Disabled activist Rev. Calvin Peterson sits in his black wheelchair, smiling while he wears a blue-and-white dashiki outfit, with a matching kufi and shades.

Reverend Calvin Peterson is a disabled Black activist who’s spent much of his time engaged in Disability activism, especially in terms of generating awareness about the Black and Disabled experience and implementing policies that create support systems for the Disabled in his region of Atlanta, whom are overwhelmingly predisposed to poverty. Born prematurely with a severe form of Cerebral Palsy that prevented him from walking, Rev. Peterson’s father disowned him, claiming that he was incapable of “producing a cripple”.

Rev. Peterson’s mother was left to care for him solely with the assistance of his grandparents, refusing to send her son to a state facility at the suggestion of the doctors who’d advised her. Nonetheless, despite their assistance his childhood remained difficult; he wouldn’t receive a wheelchair that granted him a semblance of mobility until his teenage years, and brain surgery complicated his life further, impairing his speech. Combined with poverty that led his mother to abandon academic pursuits of her own while trying to care for him, there were many systemic difficulties he faced.

Rev. Peterson persisted, however, eventually graduating from Booker T. Washington High School in spite of the rampant Ableism he experienced. He formed the Advanced Association for the Physically Handicapped, and tried his hand at marriage to Dolores Ann Rasin, although it was ultimately short-lived. Instead, he continued his academic studies and became a licensed minister in the meantime.

Rev. Peterson soon graduated from Long Island University, with his approach to Disability activism evolving as he incorporated measures to address the poverty his family had experienced while trying to care for him. He founded Disabled In Action in 1986, specifically dedicated to promoting a pedagogical system of advocacy, resources, and economic equity for disabled families and/or caregivers, although his activism hit its stride much earlier during his time as a member of the Handicapped Task Force — and later, MARTA’s Committee on Disabilities.

Since the founding the DIA, Rev. Peterson’s done everything from participate in national protests and gov’t policy advocacy — his work as president of the DIA led to a measure requiring public housing in Atlanta to be 5% accessible — to collaborative projects with Howard University’s Dr. Sylvia Walker and Morehouse University’s School of Medicine studying the abuse of the Disabled; he even published his own autobiography.

Rev. Peterson’s work throughout the decades as an AME Minister is especially distinguishable by its insistent focus on addressing the neglect and Ableism the church environments he grew up in practiced by destigmatizing common misconceptions about Disability. He’d later marry Hannah Harris in 2004; they remained together until her passing in 2008.

Peterson’s latest work with DIA includes live performances of plays and campaigns both in the religious and secular fields of society, even educational programs for public schooling and training regiments for Disability-related services. He seeks to recontextualize social advocacy and activism by explicitly encouraging all levels of gov’t and their initiatives to include the Disabled in the legislative process when addressing systemic poverty, so that the Disabled aren’t erased. Otherwise, his activism with DIA has encouraged those with disabilities to create their own networks of support and creatively tackle issues of structural inequity created by Ableism.

So ends the second volume of my series on the Black and Disabled Historical experience, including the Neurodiverse. I hope these Histories, Memories, and Narratives reveal the complicated experiences of existing in a world that measures success or constructs ideal notions of value and heroism around one’s ability to be able-bodied. Some of these people have done incredible things throughout their lives and are important to highlight as a result of how neglected they are.

Yet, as Mama Cax would say, no Disabled and/or Neurodiverse person’s worth and societal value depends on their proximity to being able-bodied or embodying “Excellence”; in our case, “Black Disabled and/or Neurodiverse Excellence”. Simply existing is transformative and declarative, and in a system historically-shaped by ableist understandings of progress at the expense of the Disabled and/or Neurodiverse, just as radical. It’s more than enough.

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AfroSapiophile is a hub for critical thinking and analysis pertaining to civil rights, human rights, systemic racism and sexism across politics, entertainment, and history.

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Mwatuangi

Afroboricua. Maórocoti. Ratchet. Disability and Mental Health Advocate. Wakanda’s Chief Director of Accessibility Services.