Anti-ableism in PM&R

Written by Erik Andersen, MD. Last updated 4/2022

Did you know…

• In a 2021 survey of 714 of US physicians, 82% reported a belief that people with a significant disability have “worse” quality of life than non-disabled people (Lezzoni et al., 2021).

• The National Council on Disability found that subjective beliefs of quality of life have an impact on medical futility decisions to withhold or withdraw care.

• Analysis of data from the 2002-2011 Medical Expenditure Panel Survey revealed that people with disabilities are 75% more likely to have unmet medical needs, 57% more likely to have unmet dental needs, and 85% more likely to have unmet prescription medication needs. Additionally, being female, living at or near poverty level, and lacking health insurance increased odds of having unmet healthcare needs (Mahmoudi et al., 2015).

Written by Erik Andersen. Last updated 4/2022

Did you know…

• A Pew Research Center survey in 2016 found that 23% of disabled Americans did not go online compared with 8% for people without a disability (Anderson et al., 2017).

What is a possible solution?

• The increasing use of telemedicine exacerbates issues with access to health care for patients with disabilities. It also has the potential to discriminate against providers with disabilities. As telehealth expands and technology continues to change, people with disabilities need to be part of the decision making process to ensure that the technology is accessible to everyone.

• As physical medicine and rehabilitation providers, we specialize in disability medicine. To further our knowledge of ableism, we suggest reading our “What is anti-ableism” section below

• We recommend that caring for people with disabilities should be incorporated and highlighted throughout all 4 years of medical school

• Awareness of the bias and discrimination that ableism can cause is important, to facilitate recognition and discussion about how it can impact patient care

Curated by Stacy Jones, MD EdM and Roxana Garcia, MD MPH. Last updated 4/2022

Want to learn more about ableism?

Recommended guides

• Anti-Oppression: Anti-Ableism by Penn College. “This guide is meant to provide users with a familiarity of many different types of oppression and how to work toward a better world by combating oppression.”

Recommended podcasts

• Being Antiracist Podcast Ableism and Racism: Roots of the Same Tree

• Disability Visibility Project Black doctors with disability

Recommended documentaries

• Crip Camp on Netflix

• Dr. Jones note: “If you haven’t seen the movie CripCamp, I highly recommend it!! It gives a wonderful history of some big names in disability rights/people who fought for the ADA to actually become a thing.”

• I’m a College Student with a Disability. Stop Treating Me Like a Child on NYTimes

Recommended reading

• Communicating With and About People with Disabilities, CDC

• How PM&R Could Do More to Promote Accessibility and Inclusion

EXCERPT:

Physiatrists are…”Disability Medicine specialists, and why aren’t you?

What’s the best way for students to learn about taking care of people who have accessibility needs? By offering education that is accessible, and therefore equitable. Lectures can be attended virtually and recorded for later viewing, they can be transcribed using certified closed captioning, and ASL interpreters can accompany speakers. Lessons on accessible social media practices can teach future providers about #CamelHashTags and [ID: Image Descriptions] so these can be normalized throughout educational materials.

An anti-ableism course isn’t really standard in your average medical education curriculum. And that’s why, when disabled people go to the doctor’s, so many of them ignorantly get called “wheelchair bound,” or are described as having “special needs,” or don’t even get addressed at all while their doctor talks only to their caregiver.

When you realize how often and how easily ableism impacts healthcare settings, combating ableism becomes part of your every day routine. And before you know it, you’re practicing Disability Medicine.

1. Re-brand: Disability is Not a Bad Word
2. Promote Accessible Medical Education
3. Practice Anti-Ableism”

• Disability Visibility: First-Person Stories from the Twenty-First Century, Edited by Alice Wong

• The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me, by Keah Brown

• Nothing About Us Without Us: Disability Oppression and Empowerment, by James I. Charlton

• Capitalism and Disability: Selected Writings by Marta Russell, by Marta Russell

• Care Work: Dreaming Disability Justice, by Leah Lakshmi Piepzna-Samarasinha

• Adopting an intersectionality framework to address power and equity in medicine Samra, R., & Hankivsky, O. (2021). Adopting an intersectionality framework to address power and equity in medicine. The Lancet, 397(10277), 857–859. https://doi.org/10.1016/S0140-6736(20)32513-7

• Compounded disparities: Health equity at the intersection of disability, race, and ethnicity - Disability Rights Education & Defense Fund

Recommended organizations (aggregated from above resources)

• Disability Visibility Network – an online community dedicated to creating, sharing, and amplifying disability media and culture.

  • Dr. Jones note: “Founded by Alice Wong, a badass disability rights advocate based in San Francisco, researcher, media extraordinaire. This website has a ton of interviews/articles, some relating to medical care for people with disabilities.”

• American Association of People with Disabilities – a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.

• ADA National Network – provides information, guidance and training on how to implement the Americans with Disabilities Act (ADA)

• Disability Rights Advocates – a national nonprofit disability rights legal center, geared at advancing equal rights and opportunity for people with all types of disabilities nationwide.

• National Organization on Disability – increases employment opportunities for Americans with disabilities.

• The Harriett Tubman Collective – A Collective of Black Deaf & Black Disabled organizers, community builders, activists, dreamers, lovers striving for radical inclusion and collective liberation.

• The Harvard Law School Project on Disability Focused on disability/human rights around the world.

• Find your local center for independent living

  • Dr. Jones note: “There are centers for independent living throughout the country. Finding your local center for independent living may great local resources to reach out to if someone in our community wants to ask about supporting any local advocacy efforts.”

• Ed Roberts Campus

  • Dr. Jones note: “Dedicated to disability rights leader Ed Roberts. They tweet out a lot about physical accessibility.