Dr. Khalilah Johnson, Olivia Cleveland, and Tajze Johnson spoke with Dr. Caryn Bell for an episode of the Partners for Advancing Health Equity podcast. The Disrupting the Cycle team discuss how Black people with intellectual and developmental disabilities (IDD) navigate the health services system and how to best support these individuals in a way that is culturally affirming and anti-ableist and affirms their ability to actively participate in their own healthcare.
Partners for Advancing Health Equity is a national research learning collaborative in Tulane University’s School of Public Health. In the podcast, Dr. Bell shares the collaborative’s work to bring together academia, philanthropy, the private sector, government, and community organizations to advance health equity.
In the episode, the Disrupting the Cycle team discusses how the “politics of the Black disabled body” impacted Black people with IDD’s health care experiences, from doctors and nurses afraid to touch patients to students excluded from individualized education plan services to family members and patients disempowered from advocating for accommodations and supports. The team emphasizes the urgency of health equity for individuals with IDD.
The team also discusses specific ways health care providers can more fully support all patients, including those with intellectual and developmental disabilities. For example, providers can communicate with patients about supports ahead of their visit, add in extra time for the visit, improve cultural humility through training and community partnership, and consider environmental factors such as the sensory environment or challenges around particular examinations. Dr. Johnson and Tajze both discuss the need for people across sectors to actively and continually engage as true community partners in this work.
Olivia offers a powerful vision of a more inclusive and supportive health care environment, informed by her own experiences: “It’s not too much to ask, but I feel like a doctor’s office should be a safe place. We should be able to come in with whatever we have and not feel judged. […] We should feel heard and feel like we’re treated normally.”