Feinberg medical students and disability advocates gathered at the second Disability Advocacy Coalition in Medicine Interprofessional Virtual Conference to address ableism in medicine and medical education.
The event was organized by the Disability Advocacy Coalition in Medicine (DAC Med), a student-led coalition founded to create a culture of disability inclusion in medicine at Feinberg.
The conference featured sessions on accessibility in medicine, disability rights, and how to advocate for and support patients with disabilities. Scientists also presented disability-related research from across the country.
“The medical model often taught is that if someone is sick, you treat them, then they’re healthy. Disability challenges that notion,” said Allison Jaffe, a second-year medical student and co-president of the Feinberg DAC Med chapter. “It’s so important for medical students and healthcare providers to talk to patients and learn that health isn’t just being sick or being well, it’s a continuum.”
The goal and theme of the conference, held October 15, was to empower patients and providers as disability advocates, said Samantha Schroth, a student in the Medical Scientist Training Program (MSTP).
“Often in medicine, we don’t talk about disability and what it really means. This includes not only people with disabilities working as physicians or other health professionals, but also actually caring for people with disabilities,” said Schroth, one of the organizers of the event. “Often times in terms of our training regarding disability, it’s word of mouth or secondhand knowledge that you just happen to pick up. In many cases it’s incorrect knowledge, and you’re passing on bias which isn’t ideal, especially for patients.”
Speakers at the conference included Prakash Jayabalan, MD, PhD, assistant professor of Physical Medicine and Rehabilitation, who spoke about how physicians can advocate for patients with disabilities.
Carolyn Foster, MD, MSHS, assistant professor of Pediatrics in the Division of Advanced General Pediatrics and Primary Care, presented alongside Margaret Storey, who serves on the Parent Advisory Council at Ann & Robert H. Lurie Children’s Hospital of Chicago and is the parent of a daughter with Aicardi Syndrome, a rare condition that causes intractable seizures and disabilities. The two provided physician and caregiver perspectives on home healthcare for children living with disabilities.
“As someone who has had firsthand experience working with children with disabilities and plans to be a provider who works with them in the future, hearing from caregivers on how providers can involve the patients’ families and getting that perspective was invaluable,” said Jessica Metelski, a second-year medical student and co-president of the Feinberg DAC Med Chapter. “The conference was so energizing for me and a reminder of why I got into medicine in the first place.”
A panel discussion on how patients can advocate for themselves in a healthcare setting was held featuring Lisa Rosen, manager of the Henry B. Betts LIFE Center at the Shirley Ryan AbilityLab; Cris Mix, education program manager of the Henry B. Betts LIFE Center, and four peer mentors to rehabilitating patients at Shirley Ryan AbilityLab including Kelly Hogan, Kenneth Jennings, Natali Shao and L. Bradly Schwartz.
Chris Lewis, MD, academic chief resident at the Shirley Ryan AbilityLab, who also helped to organize the conference, said the blend of research, provider advice and patient perspectives made the event uniquely valuable.
“Rehabilitation is a very multi-disciplinary specialty, so we wanted attendees to hear from all members of the medical team to more comprehensively understand how we consider the individualized needs of patients with disabilities,” he said. “For students to learn this early in their career gives them a better sense of what it means to be a patient with a disability navigating the medical system.”