It was a sweltering July afternoon on the South Lawn of the White House, as a crowd gathered to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA). It reminded me of a July afternoon twenty years ago, when I watched President George H.W. Bush sign into law the Americans with Disabilities Act that I had helped draft.
At that time, I thought the enactment of the ADA would forever be the landmark in challenging the status quo for disability civil rights. But when President Barack Obama announced that the United States has joined 140 countries in signing the U.N. Convention on the Rights of Persons with Disabilities, I felt we were rolling up to the threshold of a new world of opportunities for all people with disabilities.
As I look back, my life has been a practice of negotiating new worlds. It started one August morning when I woke up and couldn’t walk. One week earlier, I had been on Martha’s Vineyard playing at the beach, running in and out of the waves with my family and friends. The next week, I was in a children’s hospital with needles in my spine and skull and men in white coats asking me all kinds of questions. The diagnosis: a tumor on my spine. Before I knew it, I was in surgery. When I woke up, my legs wouldn’t move. My parents were told there was a 20 percent chance I would walk again. I was six years old.
When it came time to enroll for the next school year, my parents respectfully disagreed with the school board’s decision to bus me 1.5 hours to the school that all children with disabilities in my district attended. They petitioned the State Board of Education to allow me to attend the most modern and accessible school in my hometown of Linden, N.J. There was one problem: The school was in the middle of the “white” part of town.
Several appeals and a year later, I wobbled through the flat entrance of School No. 10 in braces up to my knees, balancing with my two canes and lunchbox—all ponytails and determination, ready to begin third grade. I was greeted by two boys and the N-word. Then came the taunts. “Oh, look—she’s a [N-word] and a cripple,” one of the boys called to the other. This is how I began my first semester of “integration.”
What was I supposed to do? I wanted to knock them out, to call them names right back, but I knew my parents would not approve. We were a nonviolent-march-on-Washington kind of family. So instead, I turned to the teacher who was standing nearby, purposefully oblivious. I said to her, “I suggest you handle this, because I know my parents wouldn’t want to come up here and talk to the principal.” That was my first opportunity as an advocate.
To get out of a chore, I once told my grandmother, “Mamuu, I can’t walk well, so I can’t help you.” My Howard University–educated grandmother jumped from behind her desk and looked at me. “Now listen, chile’, something might be wrong with your legs, but nothing is wrong with your brain.” So I knew the expectation to excel was no different for me than for my brother or cousins.
Spurred by my family’s encouragement and expectations, I experienced success in academics and in leadership. I went on to complete an undergraduate degree at Brandeis University in Waltham, Mass., and studied law at my grandmother and grandfather’s alma mater, Howard University. By then I had learned to walk and carry my backpack without wearing leg braces, although I had a distinct tippy-toe swagger.
One day I came home from school with a shooting pain in my back. I sat down on the couch and wasn’t able to get back up again. Several vertebrae in my spine had collapsed; I was paralyzed. I told a classmate, “I may have to go to school in a wheelchair, but I’m not going to quit.”
I studied everything I could find on disability rights in the late 1970s, which consisted primarily of the Rehabilitation Act of 1973 and the now-famous “History of Unequal Treatment” essay, a legal treatise written by Marcia and Bob Burgdorf. Then I petitioned the dean of the law school for handicapped parking. Dean Wiley Branton had come from Little Rock, where among his many accomplishments was serving as principal attorney in Brown v. Board of Education. My request was granted. I started to wonder, what else is possible?
As a child I had been very fortunate. I had a very supportive family, my father practiced law and my mother was an educator; both were well educated in civil rights. They had gone before me and removed barriers—they had fought for me. I thought about my friends from the children’s hospital and from the summer camp I had attended for children with disabilities. Who was fighting for them? Who would see to it that their voices were being heard?
My family’s example instilled in me the conviction that everyone deserves equal treatment—in access to healthcare and education, in the public arena, and as citizens. I realized my life’s work was to be an advocate for the civil rights of people with disabilities. I have had the opportunity to follow this dream, through nonprofit advocacy work with the National Council on Independent Living (NCIL), and as a federal civil servant through various appointments with the Rehabilitation Services Administration (RSA) and the EEOC, then later as a presidential appointee with the State Department under the Clinton administration. Today, I am proud to continue my work as the director of ADA Services with Walmart, where I have the opportunity every day to advance inclusion and help create greater access for people with disabilities.
As I sat listening to President Obama on the South Lawn, I felt the strength and spirit of those who opened the frontier and have since passed on: Justin Dart, the grandfather of disability rights, who I reported to in my role as chief of independent living; Evan Kemp, who had invited me to serve with him at the EEOC as director of technical assistance; and Dr. Sylvia Walker, who had grown up partially blind in Harlem and later established and directed the first think-tank regarding non-white people with disabilities, at the Howard University Research and Training Center.
I saw the faces of those who were leading the charge 20 years ago: Marca Bristo, former chair of NCIL, who decades before had urged me to push the boundaries of disability civil rights by taking my first federal appointment with the RSA; Don Galloway, our blind “brotha” who had the vision to bring more minorities into the Independent Living movement; and Susan Sygal, the former director of MIUSA with whom I traveled to Vietnam to help write an “ADA-like” law for Vietnamese citizens with disabilities. And I heard the countless voices of others who echo the anthem of ability and possibility, including my lovely niece Erin, a fourth-generation Davis-family Howard U. graduate, and a proud supporter of the rights of people with disabilities.
For many of us, the biggest challenge has been to change perceptions in the way people with disabilities are seen. I can say for myself, I don’t want to be seen as not being competent because I’m in a chair. People with disabilities are whole people who want to be included in the full fabric of life’s quilt. Being excluded is not acceptable. We have made great strides in the past 20 years. We have taken hold of challenges and turned them into opportunities. Is it perfect? Are we finished? No. But we’re not where we used to be.
Applied in the spirit in which it was created, the ADA is a powerful tool for erasing the ostracism felt by too many Americans. Now, we are ready to take the next step in creating a more just and equitable society for the community of people with disabilities around the world. I can’t wait to see what we are able to accomplish next.
Deidre Davis currently serves as director of ADA Services in Walmart.