Seeing the Whole Person: Disability, Race, and Healthcare

For many people with epilepsy and their families, the healthcare system can be a confusing and frustrating maze of questions, concerns, doctors, specialists, tests, bills and insurance claims. But for people of color, there can be added challenges to access due to implicit bias and (intentional or accidental) judgement. Research indicates that Black Americans are more likely to develop epilepsy over their lifetime, have higher seizure frequency, and experience a greater rate of Sudden Unexpected Death in Epilepsy (SUDEP) compared with White Americans.* As the country grapples with issues of race, discrimination, and inequality, we take a look at how these issues intersect with and impact the epilepsy management for Black families, particularly those which include a child with special needs.

Our guest this week is mother and advocate, Sherri Brady. At three years old, her daughter, Lauren was diagnosed with Rett Syndrome, a rare neurological disorder that can have devastating impacts, including seizures. For the past 20 years, Sherri has gathered the tools she needs to advocated for Lauren’s care in a biased system.

Recently Sherri contributed an essay to Seizing Life host Kelly Cervantes’ blog outlining the challenges of being a Black woman with a child who has special needs. Together Kelly and Sherri explore the issues raised in that essay and dive into additional information and advice. Sherri provides insights about her experiences in the healthcare system and shares her thoughts about how we might begin to address issues of bias and judgement to create a more empathetic, equal, and welcoming healthcare community.

For an overview of disparities in health care as they relate to epilepsy, and strategies to address them, watch our webinar Disparities in Epilepsy: Overcoming Barriers to Improve Care and Treatment Outcomes.

* US Census Bureau, Population Division, April 1, 2001 to July 1, 2013
* National Research Council (2012) Epilepsy Across the Spectrum: Promotion Health and Understanding

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