Dot Nary: Eat a hot meal with friends in tribute to Ed Roberts (Column)

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Jan. 23 is the birth date of Ed Roberts, a leader in the U.S. and international disability rights movements who received the MacArthur Foundation “genius” award in 1984. 

I’d like you to join me in exploring his life and legacy. 

Imagine that, as a typical baseball-loving 14-year-old kid, one of your mother’s worst fears is realized: You succumb to the polio epidemic of the 1950s and contract a disease that paralyzes you from the neck down, except for several fingers and toes. 

Your despair is exacerbated when you overhear a doctor tell your mother, “You should hope he dies, because if he lives, he’ll be no more than a vegetable for the rest of his life.” You spend 18 months in hospitals and, upon discharge, attend high school by phone from home, lying flat on your back with only your head emerging from an “iron lung,” a huge box-like device using air pressure to stimulate the breathing that your lungs cannot accomplish. 

How would you respond?

Well, if you were Ed Roberts, you would first decide that life was not living and resolve to starve yourself. Then, regrouping, you would revive your zest for living, decide to forge on, and make the best of it. You would draw on your sense of humor to joke that “if I’m a vegetable, I’m an artichoke — prickly on the outside and tenderhearted on the inside.”

You would earn your high school diploma, countering the protests of administrators that you had not completed driver’s ed or physical education requirements: an early lesson in the power of advocacy. You would learn to “frog breathe,” a method of forcing air into the lungs using facial and neck muscles, to free yourself from the iron lung during the day. You would learn to operate a power wheelchair using one of your unparalyzed fingers. Encouraged by your mother, you would reject others’ perception of you as a “helpless cripple” and decide that if you had to endure the stares of others, you would regard yourself as a “star.”

Are you still imagining how you might respond if this was you?

You would complete two years of college and then successfully switch to the University of California at Berkeley — despite the protest of a dean who advised, “We tried cripples before and it didn’t work.” You would live in an empty wing of a hospital on campus, the only space that could accommodate your 800-pound iron lung, but you would insist that it be administered as a dormitory. It would eventually morph into accessible housing for other students with disabilities, benefitting many beyond yourself. 

While a student, you would join with other students with disabilities to organize the “Rolling Quads” to advocate for inclusion on campus (this was a time when disabled veterans were returning from Vietnam). You would lead creation of the Physically Disabled Students Program (PDSP), the first student-led disability service program in the nation. Then you would work with the group to advocate for an accessible community with features such as curb ramps, and for services such as personal care attendants and wheelchair repair, so that wheelchair-users could be full community participants. 

You would use your joy for living, charisma, and ability to educate via your personal situation to take the model for the PDSP and extend it to the community, creating a disability resource center for the community called an independent living center. You would promote expansion of that concept into a network of independent living centers in more than 600 U.S. communities. Independence Inc. in Lawrence is one of them. You would communicate that independent living centers are not typical social services agencies but, instead, community change organizations, focused on “advocacy, advocacy, advocacy,” as Ed insisted.

You would accept a position as director of Vocational Rehabilitation Services in California, an agency that had once labeled you as too severely disabled to work. 

You would go on to co-create the World Institute on Disability, an international think tank stimulating disability policy worldwide. You would marry, have a son and travel nationally and internationally to promote accessibility and inclusion. You would take a special interest in programs for youth with all types of disabilities, recalling the dismal future predicted for you and the battles you had to fight, stating that “Everyone has a future.”

And when you were interviewed on a prominent TV program, as Ed was by Larry King, and introduced as “a victim of polio,” you would politely but firmly correct him, saying “I am disabled by polio, but I am NOT a victim.” 

Thus, you would, as a prime candidate for institutional living, not only live in the community but lead a movement that facilitates community living and social change for disabled people.

Ed Roberts was ahead of his time in considering disability as a common human experience. He recognized that we will never have an equitable society if the estimated 1 in 4 persons living with disabilities are excluded from the heart of community life. I was fortunate to hear him speak about his vision of a barrier-free society when I worked in the field of independent living. I also viewed one of his wheelchairs on display at the Smithsonian National Museum of American History in Washington, D.C. 

Although most of us neither endure the limitations that Ed experienced during his 56 years of life, nor possess the fortitude he exhibited, we can honor his legacy by working to eliminate barriers to living, working, recreating, and all other activities that impede people with disabilities in our community from fully participating. Think about it.

There are many things that you can do; here are a few:
Support our public transportation system that serves people who cannot or do not drive due to a disability.
Promote accessible housing in new buildings for both young people with disabilities and the growing number of older adults planning to age in the community.
Ensure that your workplace welcomes and accommodates employees with disabilities.
Suggest that businesses accommodate people with disabilities (e.g., accessible entrance and restroom, menus in braille and large print, etc.) to earn your patronage.

It’s been suggested that another way to mark Ed Roberts’ birthday is to share a hot meal with friends as a celebration of community living, because food delivered in institutions is too often cold when it arrives, and residents typically don’t get to choose who they eat with.

So, here’s to the legacy of this remarkable man and to all who work to achieve his vision of an accessible society. Have a hot meal with friends and celebrate his vision! 

About the writer<br>
About the writer

Dot Nary is a disability activist, retired KU researcher, and educator. She grew up on the east coast and still misses the ocean but delights in the beauty of the prairie. She loves living in Lawrence and works to make it a community that is equitable, accessible and welcoming to all. Read more of her columns for The Lawrence Times at this link.

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