Purple in Black: Epilepsy, Resilience, and the Fight for Justice

Black History, Black Bodies, and Epilepsy: From Enslavement to Liberation

Black History Month calls us to tell the whole story, not only of triumph, but of truth. When we talk about epilepsy in Black communities, we must name its deep roots in slavery, medical violence, and the systemic punishment of Black bodies that did not conform to what society deemed “normal.”

February also carries profound meaning for the epilepsy community through International Epilepsy Day and Seizure Action Plan Awareness Week. Together, these observances invite us to examine epilepsy not only as a neurological diagnosis, but as a historical and social experience shaped by racism, fear, control, and survival.

Epilepsy has never existed in a vacuum for Black people. It has existed inside systems.

Epilepsy, Slavery, and the Demonization of Black Bodies

During slavery, Black people were not regarded as patients. They were property. Any condition that interfered with labor, obedience, or productivity was interpreted not as illness, but as deviance, defiance, or moral failure. Seizures, sudden, visible, and uncontrollable, were especially threatening to a system built on domination.

Rather than care, enslaved Africans who experienced seizures were often:

• Punished rather than treated

• Isolated from others

• Labeled as unstable, dangerous, or unfit

• Used as examples to reinforce fear and control

Epilepsy was not simply misunderstood. It was demonized. That demonization justified violence, abandonment, and exclusion.

This framing did not disappear with emancipation. It followed Black bodies into the next era.

From Plantations to Institutions: Pathologizing Black Difference

As slavery gave way to Jim Crow, plantations gave way to institutions, but control remained. Black individuals with epilepsy, mental illness, or neurological differences were disproportionately:

• Institutionalized

• Placed in asylums or so called lunatic hospitals

• Stripped of autonomy and consent

• Subjected to neglect, experimentation, restraint, or isolation

Many were confined not because their seizures were severe, but because society lacked the will to support them in community. Epilepsy became grounds for containment rather than care.

This legacy still echoes today in the over policing of Black bodies, the criminalization of medical events, and the deep mistrust many Black families hold toward healthcare systems that historically harmed rather than healed.

Harriet Tubman: Epilepsy, Trauma, and Resistance

One of the most powerful and most often overlooked figures in this history is Harriet Tubman.

Tubman lived with epilepsy after sustaining a severe traumatic brain injury as a teenager when an overseer struck her in the head. Following this injury, she experienced recurrent seizures, sudden loss of consciousness, intense chronic headaches, and altered states of awareness.

Tubman herself understood these experiences through a spiritual framework, but modern medicine strongly suggests post traumatic epilepsy.

There are oral histories and longstanding accounts suggesting that she underwent an early surgical intervention to relieve pressure or swelling in her brain without modern anesthesia, during which she reportedly bit down on cloth. These accounts are not fully documented in formal medical records and remain part of oral and historical tradition rather than confirmed surgical history.

What is indisputable is this.

Harriet Tubman lived with seizures in a world that offered her no protection, no pain management, and no compassion, yet she led dozens to freedom, navigated extreme physical danger, and altered the course of history.

Her epilepsy did not make her weak.
It did not make her unfit.
It did not diminish her leadership or legacy.

It makes her story even more extraordinary.

The Nervous System Remembers What History Inflicted

Epilepsy in Black communities cannot be separated from trauma, individual, collective, and intergenerational. Chronic stress, racial terror, and systemic oppression shape nervous system functioning over time. The body adapts to survive.

For some, epilepsy coexists with trauma related conditions such as anxiety, depression, or psychogenic non epileptic seizures. For others, the trauma arrives after diagnosis, through disbelief, delayed care, dismissal, or being treated as a problem rather than a person.

Black bodies have long been expected to endure pain silently. Epilepsy challenges that expectation by making suffering visible.

When the Diagnosis Becomes the Dismissal: FND, PNES, and Medical Racism

At the intersection of epilepsy, trauma, and race lies another critical truth. African Americans are disproportionately misdiagnosed, underdiagnosed, or dismissed when it comes to Functional Neurological Disorder and Psychogenic Non Epileptic Seizures.

FND and PNES are real neurobiological conditions involving dysfunction in how the brain and nervous system communicate. They are not fabricated, imagined, or attention seeking. Yet for Black patients, these diagnoses are often delivered without explanation, without education, and without care.

Because of longstanding medical racism, Black patients presenting with seizure like episodes are more likely to experience:

• Delayed or incomplete neurological evaluation

• Dismissal of symptoms as stress or behavioral

• Lack of access to video EEG monitoring

• Abrupt diagnostic labeling without treatment pathways

In some cases, epilepsy is missed or undertreated. In others, PNES or FND is named but unsupported, leaving patients without validation, trauma informed care, or coordinated treatment.

This diagnostic failure is not neutral. It increases risk, deepens mistrust, and reinforces a harmful false binary that suffering is either neurological or psychological. In reality, many Black patients live at the intersection of both and deserve care that reflects that complexity.

When Black nervous systems respond to chronic threat, the system too often responds with dismissal rather than understanding.

By the Numbers: The Modern Impact of Epilepsy on Black Lives

The historical harms described above are not abstract. They are measurable.

Hundreds of thousands of African Americans in the United States live with epilepsy. Black individuals are more likely to be diagnosed in emergency settings rather than through ongoing neurological care. Epilepsy related mortality has risen sharply over the past decade, with higher death rates among Black Americans compared to White Americans.

Black patients experience poorer seizure control on average and are less likely to receive specialty epilepsy evaluations or surgical interventions when seizures are drug resistant. Nearly half of African Americans with epilepsy meet criteria for clinical depression, highlighting the profound mental health burden of the condition.

People with epilepsy overall face significantly elevated suicide risk, and when compounded by racial inequities in mental health access, the need for integrated, culturally responsive care becomes urgent.

These are not failures of individual behavior. They are outcomes of unequal systems.

Seizure Action Plans as Modern Day Protection

Against this historical and statistical backdrop, Seizure Action Plans take on deeper meaning. They are not just medical tools. They are documents of dignity, clarity, and safety.

For Black individuals, a Seizure Action Plan can:

• Reduce the risk of police involvement during seizures

• Ensure schools and workplaces respond appropriately

• Protect against medical neglect or misinterpretation

• Empower families, caregivers, and communities

Preparedness is a form of resistance. Advocacy is a continuation of liberation work.

Faith, Survival, and Healing Without Harm

Faith sustained enslaved people when nothing else would. It continues to sustain many Black families today. But epilepsy care must move beyond narratives that frame seizures solely as spiritual punishment or tests of belief.

True healing allows prayer and medicine to coexist. Seeking care is not a lack of faith. It is an act of self preservation.

From Survival to Sovereignty

Black history teaches us that survival is not the end goal. The future of epilepsy advocacy must center sovereignty, where Black individuals with epilepsy are believed, protected, resourced, and free to live fully.

That future requires naming historical harm, challenging stigma rooted in slavery and institutionalization, centering Black voices, and expanding access to culturally responsive neurological and mental health care.

Epilepsy advocacy is Black history.
Disability justice is liberation work.

And every seizure action plan, every honest conversation, and every moment of visibility moves us closer to a world where no one is ever again punished, confined, or silenced for how their body survives.

Continuing the Work: Education on African Americans, Epilepsy, FND, and Medical Disparities

Understanding epilepsy in Black communities requires ongoing education that reckons with history, trauma, and systemic inequities in diagnosis and care. The following confirm and deepen the realities discussed above.

Epilepsy and Racial Health Disparities

• Epilepsy Foundation
  Population specific data on epilepsy prevalence, emergency based diagnosis, seizure action plans, and care gaps among African Americans.

• Centers for Disease Control and Prevention
  Surveillance data documenting epilepsy burden, mortality trends, and disparities in outcomes.

• Begley, C. E., et al.
  Racial disparities in epilepsy care. Epilepsia.

Slavery, Medical Racism, and Institutionalization

• Washington, H. A.
  Medical Apartheid.

• Gamble, V. N.
  Under the shadow of Tuskegee.

• Metzl, J. M.
  The Protest Psychosis.

Harriet Tubman, Trauma, and Epilepsy

• National Park Service Harriet Tubman historical accounts

• Clinton, C.
  Harriet Tubman: The Road to Freedom.

FND, PNES, and Trauma Informed Neurology

• LaFrance, W. C., and Devinsky, O.
  Treatment of psychogenic non epileptic seizures.

• Stone, J., et al.
  Research on Functional Neurological Disorder and diagnostic bias.

• van der Kolk, B.
  The Body Keeps the Score.

• Bryant Davis, T.
  Healing Requires Recognition.

Disability Justice and Community Based Advocacy

• Epilepsy Reach Foundation
  Equity centered epilepsy education, mental health advocacy, and caregiver support.

• Legacy Bridges Foundation
  Equity centered epilepsy and disability education, and caregiver support

• National Black Disability Coalition

Education is not neutral. In the context of epilepsy and Black history, it is corrective. Learning is part of liberation.