09/19/2025
I haven't share a good book recommendation in a while. I highly recommend Being Heumann, by Judith Heumann.
Imagine having quadriplegia after polio in the 1960s, being told you're a "fire hazard", and not permitted to attend school. After years of fighting against both physical and institutional NYC barriers, you triumphantly attend college. And then you have to wait outside your dorm in the cold, for a kind stranger to open the door and help you inside. During this process, you're hoping a friend is home and can help you maneuver your wheelchair into a bathroom before it's too late. It took a village, as this scenario played on repeat for years, as Judith Heumann navigated a world designed for walking legs and arms with full-use. But she was a fighter. In her early 20s, (1970) she sued the New York City Board of Education for discrimination. Despite passing her exams and repeat interviews (with intent to humiliate and demoralize her), she was denied a teaching license because she used a wheelchair. She won the lawsuit, but couldn't get a job.
She soon relocated to California at the encouragement of a fellow activist with a disability. San Francisco provided personal care attendants (PCAs) at no cost. She no longer had to knock on doors, seeking assistance to use the bathroom, get into bed, and dress herself. In 1973, she was instrumental in a multi-state sit in to pass Section 504 of the Rehabilitation Act—the first federal civil rights protection for people with disabilities. While the Civil Rights Act was established a decade earlier, it didn't include individuals with disabilities. They were told to rely on charities. The American Disability Act (ADA) was signed into law in 1990 and Judith was a key figure in the movement. She was known as the "Mother of the Disability Rights Movement." The book details her heroic activism, through numerous presidencies, as she gave a voice to her community with physical, mental, and sensory conditions.
While Judith would broke down many barriers, we're still living in a world meant for walking legs. This was reinforced in graduate school, 10 years after the ADA was passed. I confined myself to a wheelchair to complete a two day assignment while studying spinal cord injuries. I carried the wheelchair back and forth from my car (with no hand controls) to my inaccessible 2nd floor apartment, knowing I couldn't use my bathroom. I acknowledged all the obstacles and failures before happily passing along the wheelchair to another classmate to briefly experience living with paraplegia.
I think about this experience as I watch my next door neighbors remodel their home. Jonathan Liang suffered a spinal cord injury after a surfing lesson in California during a family vacation before college. Surfer's myelopathy is rare, and hard to process. It has left Jonathan paralyzed from the waist down. I wish he could give away his wheelchair after 2 days of use like I did. Instead, a pathway and a ramp has been installed for more long-term use. As you can imagine, the costs are exponential for home modifications, motorized wheelchair, accessible vehicle.... He is expected to come home today.
He will live in a different world than Judith Heumann, but it still takes a village, so if you can, please help! Here is the link sharing Jonathan's story: https://helphopelive.org/campaign/26256/.