I have celebrated numerous anniversaries of the Americans With Disabilities Act with other people with disabilities.
My spinal infarction was in 1976 – 14 years before the ADA was signed. I know what life was like before the ADA, and I worked with many to see it off.
But this year feels different.
The disability rights and cultural movement has been both influenced and heavily influenced by other groups seeking justice. Disability intersects with racism, sexism, classism and all the “isms”. According to the Centers for Disease Control and Prevention, one in four adults in the United States has a disability.
COVID-19 has been severe for many people with disabilities. Likewise, many refuse to simply return to the struggles of “normal” life prior to COVID.
Collective Disability Pride is also picking up speed. For example, this week the Ford Foundation launched The Disability Futures initiative on Zoom (disabilityfutures.splashthat.com). Twenty disabled creative scholars presented their work on topics ranging from “Portraits of the Disabled” to “A More Inclusive Community – The Power and Presence of Indigenous Disabled Stories”.
This year feels different to me too. In the spring, during the lockdown, I was diagnosed with breast cancer.
Like many vulnerable people who come from home, I don’t yet feel completely safe. I often feel more comfortable wearing a mask in public places. I am also close to many healthcare workers and patients; I have no idea which people were vaccinated. Not all of them are masked either.
I have had several tests and procedures over the past few months. The test itself has become the least of my worries. Instead, I’m more and more afraid of risking pain and injury to my body before and after the test, be it from moving my chair to another surface or from the testing equipment itself. The technicians seem pathetically poorly trained to look after me to help and often ask my husband to take over all the assistance.
In contrast to other patients, I was told that because of my needs I might have to forego a test or be sedated for an otherwise common procedure in the operating room – or have to be sent to another district. It seems like I’m doing all of the customization. I have the right to the same health care as a non-disabled person. How has the health world largely ignored three decades of the ADA? Few patients know they can file a civil rights complaint with the Department of Justice, Office of Civil Rights, or the US Department of Human Services. The US Access Board recently reviewed the ADA regarding diagnostic equipment.
I also had a near-perfect “access intimacy” experience with the radiology team at Munson Medical Center.
With all the same challenges, they treated me with the greatest kindness and problem solving. I felt safe with them.
On my last visit to the University of Michigan Medical Center, a young girl in a wheelchair watched me for a long time before she said hello. Forty-five years ago I was in the same place she. Years from now, others with disabilities will seek your guidance.
Contact Susan Odgers at [email protected]. She has lived in Traverse City for 34 years and has been using a wheelchair for 45 years. She is a faculty member of Northwestern Michigan College and a member of the National Society of Newspaper Columnists.