In a powerful session, the "Black & African American Voices" panel brought to light the often-overlooked challenges faced by people of color in the bleeding disorders community. The discussion, featuring a diverse group of speakers, painted a vivid picture of the intersectionality between race, health, and identity.
Cathy Tiggs, MSSA, LISW an HTC social worker at the UH Cleveland Medical Center Department of Hematology and Oncology, also living with a rare disease, shared her journey of struggling with inclusion. "Growing up, I often felt like I didn't belong anywhere - not in the black community because of my disability, and not in the bleeding disorders community because of my race," Tiggs revealed. Her story underscored the unique challenges of navigating multiple marginalized identities.
The specter of discrimination in healthcare settings emerged as a recurring theme. One participant recounted, "I've had to fight to be heard, to be believed. It's exhausting having to constantly advocate for yourself when you're already dealing with a chronic condition."
Marnesha, a mother, highlighted the critical role of parental advocacy. After her son suffered a concussion, she found herself pushing back against dismissive medical professionals. "As a black mother, I felt I had to work twice as hard to be taken seriously," she stated, her voice tinged with frustration and determination.
The session took a dramatic turn when Kristen Johnson shared her harrowing experience with an undiagnosed Factor VII deficiency. "I nearly died because my symptoms weren't taken seriously," Johnson said. Her story served as a stark reminder of the potentially life-threatening consequences of healthcare disparities.
Perhaps most concerning were the accounts of perceived bias based on skin color during medical treatments. One attendee described feeling discriminated against by nurses, saying, "It's subtle, but you can feel the difference in how you're treated."
Despite the heavy topics, the session was not without hope. Many speakers emphasized the importance of self-advocacy and community support. "We need to keep telling our stories, keep pushing for change," one participant urged.
As the session concluded, the moderator posed a thought-provoking question: Are these types of discussions still necessary? The resounding consensus from attendees was a clear "yes." One participant summed it up poignantly: "As long as there are disparities, as long as we feel unseen or unheard, we need these spaces to share, to heal, and to strategize for change."
The "Black & African American Voices: Intersection Identities" session at the #BDC2024 didn't just highlight problems; it sparked conversations about solutions. From improving representation in medical fields to fostering more inclusive community spaces, the path forward, while challenging, was clear. As one speaker put it, "Our voices matter. Our experiences matter. And together, we can make the bleeding disorders community a place where everyone truly belongs."
To learn more about NBDF’s Health Equity, Diversity and Inclusion initiatives please visit bleeding.org/HEDI.
