Artist Discussed Lived Experience with Disability in the Healthcare System

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August 22, 2023 | Downers Grove, IL

Riva Lehrer autographed her books for Midwestern University students, staff, and faculty.

The College of Health Science Interprofessional Committee hosted Understanding the Lived Experience of People with Disabilities: An Interprofessional Event that featured Riva Lehrer, author, artist, and instructor at Northwestern University and the Art Institute of Chicago. Ms. Lehrer wrote the book “Golem Girl: A Memoir,” where she described living with spina bifida, coming into her identity, and navigating adulthood.

 Ms. Lehrer advised Midwestern students about their future careers as healthcare professionals. “You guys are cutting edge on this. You can be the advocates, not just working with clients, but working with the system, the surroundings of your clients. And you can teach the workplaces and the schools that my clients can do this. Open your perspective a little bit and look as much as you can.”

Ms. Lehrer was born in 1958, a time when the majority of babies with spina bifida did not live to their second birthday. She underwent 47 surgeries in her life, some a medical necessity and others that attempted to make her fit into mainstream society. She read an excerpt from her book where a surgeon promised she could wear the same shoes as other girls her age once she underwent surgery. The surgery involved cutting part of a bone from her right knee before she stopped growing, in order for her left leg to catch up to her right leg in length. However, she had already stopped growing at the time of the surgery. “This guy did not do the studies he was supposed to have done. These are basic tests. I had already stopped growing. By the time he cut my leg apart, there was nothing that was going to happen. It wrecked my knee and caused me lifelong problems,” she said.

During her growing years, she and her classmates were not told about role models who lived with disabilities such as Stevie Wonder, former president Franklin Delano Roosevelt, and Helen Keller. They were not asked what they wanted to be when they grew up. She added, in general, children with disabilities are taught to cook and care for only themselves.

She described her journey to adulthood. “I was explicitly told that I would never have a relationship. I would never have a family. I would never have a job or a career. I'm just going to live in my parents’ basement. If I was really lucky, I would go off and be a kindergarten teacher.” Ms. Lehrer said healthcare should prepare people with disabilities to live the lives they envision and accomplish the goals they have in mind. She suggested a proper approach. “You can have this life if you master these skills, which is completely different than here’s some skills, catch up with your Netflix.”

Ms. Lehrer also shared why she wrote the book. “My aim was to look at the things that had happened to me. And what did they say about society at the time, and how they connected history with social rights?”

A case scenario depicting a healthcare encounter that portrayed evidence of implicit and explicit biases towards ableism was presented for students. The case scenario was further discussed and reflected upon during small group discussions. The discussions were led by other people who identified with a disability, in order to provide further insight and reflection on attitudes towards people with disabilities in the healthcare system.

The Midwestern University community also gathered to hear disability community representatives share their experiences.

Attending students shared their thoughts. Medical student Kelly Brake (CCOM ’27) said, “This event is a way for me to educate myself about something I don’t have real world experience with. I’m sure I’ll have many patients with disabilities. I’m hoping this event will help me bridge a gap and understand what they’re going through, even a little bit. I’m grateful for the experience as an incoming student.” 

Occupational Therapy student Daphney Gabriel (CHS-DG ’25) said she attended the event to enrich her learning experience. “It will better help me connect with future patients and learn their environment.” Her classmate Talya Flores (CHS-DG ’25) added, “It’s important to see different perspectives and work with interdepartmental professionals to provide better care for our clients, and for us to understand and advocate for our clients.”

Physical Therapy student Alexsander Kelsey (CHS-DG ’26) said, “I have lots of experience working with people with disabilities,” and added his sister lives with disabilities. He attended the event to “get different strategies for when I’m working as a physical therapist.” He also said it was important to him to hear the viewpoints of people who experienced issues with the healthcare system.

Interprofessional events are one of the ways Midwestern University continually teaches students to become caring, compassionate, patient-centered professionals in their future healthcare careers.