Beyond the Diagnosis: Prioritizing Race and Culture in Aphasia Treatment

What is aphasia?

Imagine you wake up one morning and turn to tell your partner “good morning”. You know exactly what you want to say, you’ve said this phrase everyday for as long as you can remember, but on this day the two words just won’t come out. 

Aphasia is a change in expressive and receptive language skills, typically after a stroke, that affects a person’s ability to communicate effectively with others. It occurs as a result of damage to the language dominant side of the brain, typically on the left side. Currently over 1 million people in the United State live with aphasia, and nearly 180,000 people acquire aphasia each year. Aphasia occurs across all gender, ages, nationalities, and races. However, Black Americans are at least four times more likely to have a stroke than White Americans. Thus, it stands to reason that Black adults have an increased risk of an aphasia diagnosis. 

My experience 

In August 2020, I began volunteering as a student clinician in San Francisco State University's Gray Matter Lab administering aBSANT therapy (Abstract Semantic Associative Network Training) to adults with aphasia. My first patient was a retired social worker with 2 children and a grandchild on the way. She was diagnosed with aphasia 2 years prior after suffering a stroke. While many parts of our lives were different, we also had significant similarities. We were two Black women, living through an unprecedented time of a global pandemic, and had recently watched a Black man die at the hands of a brutal policeman on national television. 

The pandemic and the murder of George Floyd elucidated the racism and systemic inequalities that devestate the lives of Black people all over America. We immediately became comfortable with each other. She shared the trouble she felt in her support groups where participants often made racist or derogatory comments and discussions did not pertain to the glaring racial issues affecting her daily life. The conversations continued for the duration of our 20 weeks of therapy and left me thinking, what are we as practitioners doing to support the Black community, who not only face unique healthcare obstacles, but who also feel unsupported by groups intended to create a space of belonging and community? 

Call to action 

Shortly after, Gray Matter Lab director, Dr. Teresa Gray CCC-SLP, received an email from a social activist and Black man with aphasia. He mentioned a similar experience to my patient; his aphasia support groups were predominantly white, and did not address culturally relevant topics that mattered to him. We spent time reviewing literature that shows Black people experience comparatively worse health outcomes compared to their white counterparts and that a person's environmental, economic, and social factors are significant contributors to recovery outcomes. We then created a Black Conversation Club for Black Adults with Aphasia, designed to offer them a safe space to connect over shared experiences and culture while practicing their communication skills. No topic was off limits. Participation steadily increased. Race relations and culture quickly became the central theme of the discussion group.

 A single focus group is not the solution to address all medical disparities in America. Our hope is to plant a seed to inspire practitioners of all races and backgrounds to begin a solution-oriented roadmap to increase the quality of care for those with disabilities. Additionally, careful consideration of practitioner positionality and bias is critical for improving clinical outcomes for our patients. By working in tandem with patients, listening to their stories, treating them as the experts of their own lives, and valuing their unique cultural backgrounds it is possible to make therapy material and recovery groups relevant and meaningful. There is a call for a reconceptualization of treatment across all neurogenic disorders. Development of therapy services directly targeting the needs of people of color can contribute to producing the most equitable, accessible, and effective treatments for all.


Kenly Doyle is a graduate student at San Diego State University, Sally Casanova Pre-Doctoral Scholar from San Francisco State and former intern of the Emacipatory Sciences Lab