Note: please be warned this article deals with discrimination towards people with physical disabilities and quotes an offensive and discriminatory remark which may be upsetting.
In 1953, at the age of fourteen, Ed Roberts contracted polio, just a couple of years before vaccination put an end to the polio epidemic. After an eighteen-month hospitalisation and upon returning home, he found himself largely paralysed from the neck down, apart from the use of two fingers on one hand and a few toes.
During his recovery, he relied on an iron lung for respiration at night and built up an expertise in the technique of "frog breathing" during the day to aid his breathing process, using facial and neck muscles to force air into his lungs. This enabled him to live outside of the iron lung and the freedom to attend to his education.
Initially Roberts pursued his studies remotely via telephone. However, his mother insisted he attend school in person once a week for a few hours. He was apprehensive about being stared at due to his condition, but he went to school. Roberts adopted a mindset of resilience, choosing to see himself as a "star."
He credited his mother's example for instilling in him the determination to advocate for his needs.
His high school initially threatened to hold back his diploma because he hadn't completed driver's education and physical education. And there were many other challenges with the system. Despite being admitted to the University of California, Berkeley, Roberts had to fight for the support he needed to attend college, because his rehabilitation counsellor thought he was too severely disabled to ever get a job.
Then he needed college accommodation and this met with resistance partly because of the very large iron lung that he slept in at night. The campus health service offered him a room in an empty wing of the Cowell Hospital and Roberts accepted on the condition that it would be treated as a dormitory space, not a medical facility.
Roberts' university admission broke new ground that enabled other students with similar physical needs to join him. This eventually became the Cowell Residence Program. This was enormous progress, considering one of UC Berkeley's deans was famously reported as saying, "We've tried cripples before and it didn't work."
Ever wondered where curb cuts came from?
The group of Cowell residents developed a strong sense of identity and enthusiasm, formulating political analyses of disability issues. They adopted the name "Rolling Quads," an expression of their positive identity.
The Rolling Quads expanded their advocacy to include initiatives advocating for curb cuts in the streets around campus, enhancing community access.
They also established the first student-led disability services program in the US, for which Ed Roberts flew 3,000 miles from California to a conference in Washington, D.C., without respiratory support, to secure funding. Initially catering to the needs of university students, this program soon found itself with much greater impact providing assistance to individuals with disabilities beyond the student community.
Accessibility and Discrimination
Ed Roberts recognised that numerous buildings at UC Berkeley posed accessibility challenges for him and fellow wheelchair users. Often, students could not attend university classes on upper floors without being carried. This spurred disability rights activists to push for an end to discrimination and the establishment of legally mandated protections for individuals with disabilities.
Roberts and his colleagues staged a sit-in to enforce section 504 of the Rehabilitation Act of 1973, which prohibited the exclusion, denial of benefits, or discrimination against people with disabilities in programs receiving federal financial assistance. The sit-in lasted 28 days.
Support for the movement extended beyond disability rights circles, with various other groups, including the Black Panthers, the Butterfly Brigade, and anti-gay violence advocates, providing essential support by delivering food and materials to the protesters. Throughout the protest, Roberts delivered speeches to motivate the crowd.
Following these persistent efforts, government officials eventually agreed to hold a congressional hearing within the building. The testimonies of Roberts and fellow activists lead to section 504 being signed into law and fully implemented under President Nixon, marking a significant victory. This demonstration ultimately laid the groundwork for the landmark Americans with Disabilities Act of 1990.
Impact upon impact, the Story of Ed Roberts
I first heard the story of Ed Roberts in 2018, roughly 23 years after his death in 1995. He had married and divorced and left behind an amazing personal legacy to his son, as well as significant impacts on the scope of advocacy, disability activism and accessibility in the modern world.
This story inspired me because as a young man, Ed wanted change in his life and was met with the strongest, institutionalised resistance seemingly at every turn. In not accepting anything less than what was right, Ed Roberts demonstrated how one voice can lead to many and can inspire small changes and large-scale change alike.
The power of Ed Roberts' story is that he was on the side of humanity, dignity and fairness. He asked genuine questions and sought accountable answers. When we're genuine about the need for change, not only do we have the right to speak up about it, we also have the mandate from the future.
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