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Shifting My Mindset: From Internalizing Ableism to Dismantling It

by Emily Harris, Executive Director, Disability & Philanthropy Forum

“While it’s great that you’re discussing large long-term investments in accessibility, there are some smaller and quicker things you could do right now to comply with the Americans with Disabilities Act. Using microphones at your public meetings would be a great way to help ensure that hard-of-hearing people like me can participate fully.”  

Saying these words at a public meeting was life changing. I had previously asked the meeting organizers to consider using a sound system, but I had always framed it as a suggestion with some embarrassment that I was being a burden. Framing the request as an accommodation I was entitled to under the ADA was incredibly empowering.  

When I shifted my focus from my perceived deficit to demanding that the organizers remove barriers to my full participation, I went from feeling inadequate and isolated to powerful. And because accessibility frequently benefits everyone, multiple audience members thanked me for asking, saying that microphones would improve their experience too.

Although a sinus infection in 1996 caused my permanent hearing loss, I didn’t identify as disabled until 2015, when I had the opportunity to work with some of Chicago’s most active disability rights leaders to develop ADA 25 Chicago, a 25th anniversary celebration of the Americans with Disabilities Act. That anniversary was central to my professional journey as well, serving as a catalyst to advance accessibility and inclusion in metropolitan Chicago, and founding a leadership program now called Disability Lead, designed to connect people with disabilities to leadership opportunities on non-profit boards and public sector commissions. 

Prior to ADA 25 Chicago, my career as a strategist, planner, and communicator spanned open space conservation, historic preservation, economic development, and early childhood policy. When I started my disability inclusion journey, I knew almost nothing about making events or documents accessible, asking for accommodations, the history of the disability rights movement, or the emergence of the disability justice movement. I had never engaged intentionally with disabled people. I had no idea that I was about to be welcomed into a warm and supportive community of disabled advocates who would lift me up, educate, and empower me.  

Even after working in disability rights for several years, I still found the word ableism hard to say, and didn’t understand it as a system of oppression. Enter Covid-19 and discussions of medical rationing, which made it stunningly clear to me that our culture does not value disabled lives. Not only that, but ableism is at the heart of our current rush to “get back to normal,” often leaving behind disabled people (such as people with “underlying conditions,” and immunocompromised people) who need us to maintain truly equal hybrid work places, conferences, and safe environments for their very survival. 

Ableism is now central to my vocabulary, and as I learn to recognize ableism in our systems, laws, culture, and in myself, I am seeking new ways to work and to live. One of the greatest joys of this work is the opportunity to connect with disabled leaders who bring creative and innovative solutions to problems of all kinds. My deaf friends taught me to use live captioning apps to augment my comprehension both on and off Zoom, and vastly simplified my note taking in the process. Fellow disabled colleagues have helped me explore how I might design programs that truly include people both virtually and in person. Observing the extensive mutual aid efforts of disabled people responding to Covid or to climate-change-induced disasters gives me insight into how we must prevent our broken systems from leaving people behind through both immediate action and the long-term fight for better policies. I’m continually learning from disability justice leaders about how interlocking systems of ableism, racism, and multiple other forms of oppression influence our systems and culture, as well as my own ways of thinking, and the privileges I hold.

Philanthropy can play a significant role in seeding social change. Serving the Disability & Philanthropy Forum is a unique opportunity to continue my own personal and professional learning journey alongside philanthropic leaders committed to inclusion and disabled movement builders. Together, we can leverage the wisdom of the disability community and the investments of philanthropy to disrupt ableism and advance equity.