Chronically The Patient Empowerment Newsletter
Ableism refers to systemic discrimination and prejudice in favor of able-bodied people. It is based on the harmful belief that people with disabilities are inferior or defective. Ableism manifests in various ways that limit and disadvantage the disability community.
As someone living with multiple invisible chronic illnesses and disabilities, I face ableism regularly through assumptions, stigma, lack of accommodations, and more. However, because my disabilities are not outwardly visible, I am extremely vulnerable to the impacts of ableism in my daily life.
Forms of Ableism
Ableism appears in many forms, including:
Prejudice and discrimination against people with disabilities. Treating them as less capable, valuable, or worthy than able-bodied people. 👎🏽
Social attitudes, structures, and practices that disadvantage people with disabilities. For example, inaccessible buildings and lack of accommodations. 🏛️
Assuming able-bodied experience is ideal or normal. Failing to recognize challenges faced by disabled people. 🤔
Use of ableist language, slurs, or stereotypes related to disability. Portraying disabilities in a negative way. 🚫
Lack of representation or inclusion of disability experiences. Marginalization of disabled people. 🗣️
Systems and policies that do not meet the access needs of people with disabilities or exclude disabilities. 🛑
Belief that disabilities need to be 'overcome' or cured rather than accepted and accommodated. 🙅🏽♂️
Impacts of Ableism
For me, ableism causes others to frequently judge me unfairly and make incorrect assumptions about my behaviors, skills, and needs. When my disabilities result in processing delays or confusion, people presume I'm unintelligent rather than recognizing my disability. I've been accused of exaggerating or faking my largely invisible symptoms.
People also often fail to provide me with reasonable accommodations that would allow me to participate fully. For example, a yoga instructor refused to modify poses to accommodate my chronic pain and fatigue. And conductors have demanded I get up when I've needed to sit on the train due to debilitating dizzy spells.
In addition, ableism leads others to view my life with disability as inherently disappointing or less worthwhile. But disability is a natural and valuable form of human diversity. It only results in disadvantage when society chooses not to accommodate it appropriately.
Finally, ableism causes others to discourage me from openly discussing my disability experience. This silences and shames me, implying disability should remain hidden.
Steps Toward Positive Change
While living with invisible disability in an ableist world is extremely challenging, I believe we can build a more just and inclusive society. Dismantling ableism requires:
Education to raise awareness of ableist biases, language, behaviors and systems
Embracing disability as a natural and meaningful human experience
Increasing representation and amplifying disabled voices
Enacting accommodations, accessibility, and inclusion for the disability community
Policy and culture change to break down barriers and uphold disability rights
We all have a role to play through our daily actions, conversations, and advocacy. Small attitudinal and behavioral shifts can lead to greater accessibility, understanding, and empowerment for people with varying abilities. With compassion and effort, we can make society a welcoming place for all.
Further Reading:
Ableism 101: What It Is, What It Looks Like, and What We Can Do To Fix It https://www.healthline.com/health/ableism
Know Your Rights: Disability Discrimination https://www.ada.gov/cguide.htm
Disability Visibility: First-Person Stories from the Twenty-First Century by Alice Wong https://www.penguinrandomhouse.com/books/611478/disability-visibility-by-alice-wong/
The Disability Rights Movement: From Charity to Confrontation by Doris Zames Fleischer and Frieda Zames http://credo.library.umass.edu/view/full/mupui101340037
Disability and Intersecting Statuses by Committee on the Status of Women and Girls with Disabilities https://www.nap.edu/read/24651/chapter/1
About the Author:Roi Shternin is an influential patient advocate and thought leader on issues related to chronic illness, mental health, patient experience, and access. His own medical journey led him to become a dedicated champion for empowering patients. Roi promotes systemic change in healthcare through his writing, public speaking engagements, and founding of collaborative platforms.