ECNV: Chance or Choice? Part 1: Beginnings

This is the first of a series of articles intended as part of ECNV’s celebration of its 40th Anniversary. This first article focuses on the people and events surrounding ECNV’s founding in April 1982.

By Doris Ray, Director of Advocacy

We met by chance in 1980 – a group of friends in our 20’s and 30’s, and each with personal life experiences living with disability. Each of us had faced some form of the paternalism and prejudices that led to the exclusion of people with disabilities by most of society for centuries. We each had faced the physical and attitudinal barriers in society imposed on us. Most of us encountered discrimination as we tried to find a job, use public transit, obtain housing, visit a bank or the grocery store, or even go to the post office and vote at the local courthouse. As a result, we shared a common commitment to do something about it!

ECNV’s Founders

There was Anthony “Tony” Young. A star football player in high school, he had just graduated in 1970, and was on his way to college and planned a coaching career when he became a spinal cord injured quadriplegic as a result of a body surfing accident at the beach. After a hospital stay and a few weeks of rehabilitation, the doctors released him to the care of his parents, saying there was nothing more they could do. His parents refused to send Tony to a nursing home.

As he told it, the doctors prescribed painkillers and sedatives and told his parents to make him comfortable. There at home, he languished for 3-4 years until a visiting physical therapist explained to him and his parents that it didn’t have to be that way. Thereafter, Tony campaigned against anyone, especially young adults, ever having to end up in a nursing facility just because they had a disability.

By 1980, he had participated in a rehabilitation program, acquired independent living skills, and learned to manage his own personal assistance services. He attended George Mason University, graduated with a business degree, and got a job in the Federal Government as a budget analyst.

It was Tony who first mentioned wanting to start a Center for Independent Living (CIL) like the one in Berkeley, California. He chaired the committee that wrote the proposal to obtain funding for ECNV, and he was ECNV’s first executive director in 1982 when it opened.

There was John Collins, son of an Army colonel who was born with Osteogenesis Imperfecta, also known as brittle bone disease, and who was quadriplegic and used a power chair to get around. John attended college, worked as an analyst at a firm in Arlington, and helped found the Alexandria Commission on Persons with Disabilities (ACPD) as well as the Arlington County Disability Advisory Commission. John’s work led to the Alexandria Human Rights Ordnance of 1974 including protections against discrimination on the basis of disability. John contributed to writing the proposal that led to the founding of ECNV and he and his family continued to support ECNV over many years.

Sandra Kidd, Tony’s friend who lived in Annandale, joined the group. She was a mother, a homemaker and community activist. She was hemiplegic and had a speech communication disability due to a stroke. Sandy served as one of ECNV earliest Board Presidents.

Sheila Cunningham joined the group too. She lived in Arlington with her husband, John, but they eventually moved to Fairfax County. Sheila, a bright young woman in her 20s, was born with cerebral palsy. She worked at U.S. AID, starting as a clerk/typist, and rising to become a trainer and curriculum developer while attending college and earning a degree. She eventually became the Chair of the Arlington County Disability Advisory Commission. Sheila became the President of Handicaps Unlimited of Northern Virginia (HUNV) in late 1981, when Tony Young stepped down to become ECNV’s founding Executive Director. HUNV had a contract with DRS to operate ECNV until January 1985 when ECNV became a separate, freestanding corporation.

Other group members included Larry Allison and Robert Gorski, both of whom worked as public affairs specialists for federal agencies. Both were wheelchair users after having polio as young children. Robert was originally from California and helped found the Westside Center for Independent Living, one of the oldest CILs in the nation. His leadership was invaluable from 1983 to 1985 when he served as ECNV’s President.

Later on, David Weiss, who was the President of People first in Northern Virginia and his wife joined our ranks as did many others.

Lastly, there was me, Doris Ray. A fourth generation, native Washingtonian, I was born without irises legally blind as a result of a genetic disorder. My mother, her brother, and my maternal grandmother were also blind and so I grew up with peer mentors in my family. As a very small child, I never realized that I had a disability or was different from anyone else. That changed when I was 6 years old.

I learned that I would not be permitted to go to my neighborhood school and that I would be bused to a school on the other side of the city to go to a segregated class for blind and vision impaired students. My counter arguments that I could do fine in a regular classroom with just a little help were ignored.

I spent six years in segregated classes with other blind students. We were bused, traveling up to an hour and a half each way. We were a racially integrated class, but we never went to the cafeteria for lunch with the other students and our recess was taken after the able-bodied students had theirs. Worst of all, I knew that we were not receiving the same education that students in regular education classes were getting.

It wasn’t just blind students who had to attend separate classes. It was deaf and hard of hearing students and those with physical disabilities. Many children who had disabilities weren’t even allowed to go to school or were sent to residential schools as had been the case with my mother and grandmother.

Finally, in sixth grade, and living in Maryland, I was allowed to attend regular classes full time, and after a bit of a tough transition, I was able to succeed and earned good grades just as I had told them I could. I graduated from high school, and then the University of Maryland in 1972.

When I started looking for my first job, I and most of my peers had to deal with discrimination on the basis of disability in the workplace. Things like answering a job announcement in the newspaper and being asked to come to an interview. When you arrived, you would be told that they were not interviewing that day once they saw you had a disability. Most job applications asked whether you had a disability, and if you answered in the affirmative, you would most likely be screened out of the pool of applicants. If you were interviewed, you were often asked questions like “How do you get up in the morning and get to work if you don’t drive?” “How do you take care of yourself?” was another frequently asked, but inappropriate, question.

Although I finally landed my first job, it was my experience with my job search which motivated me to get in contact with a disability advocacy organization and become a member. That was before I met other people with disabilities and got involved with the group that founded ECNV.

My first job was as a corporate librarian in an engineering firm. I did that for a half dozen years until a search for a job at a different company led me to a job as a researcher, writer and editor for a company that contracted with the U.S. Department of Education where I learned about the national, cross-disability civil rights movement and a new grant program that assisted people with disabilities to establish peer-based, community resource centers in their own communities. These resource centers were called Centers for Independent Living, or CILs.

That’s when fate took hold of the situation, and I met a group of people who would, eventually, found ECNV.

A Group Project

In 1980, our group which would found ECNV, met as a result of the Fairfax Commission on Persons with Disabilities (FCPD) deciding to do some disability awareness activities during the month of October. An acquaintance asked me to attend a planning meeting that spring and I did. The ideas for events seemed to focus mainly on specialized programs that the county offered for people with disabilities and not integrated services accessible to all.

After giving it some thought and discussing it with friends and colleagues, I attended a second planning meeting and proposed that they do a Barriers Awareness Day event planned by people with disabilities and that would involve local and state elected officials, the business community. and members of the press.

I had learned about this type of event from a friend I had met from Arkansas who had been involved in planning a similar event held in Little Rock. One of the participants in one of their first events was a newly elected state governor named William Jefferson Clinton.

The Fairfax Disability Commission liked the idea and agreed to sponsor the event, and only then did I realize what I’d gotten myself into! Advocacy was great, but it has to be followed with hard work to pay off.

We went to work recruiting volunteers from the disability community, including Commission members, personal contacts, work colleagues, and members of the public. After several months of planning, our group of volunteers were ready. We lined up 30 community leaders willing to spend a day using a wheelchair to get around while going about their usual activities and returning to a local hotel ballroom for a press conference to report on their experiences and the lessons they had learned.

Low and behold, the event was a success! We got a lot of press coverage with stories about how unnecessary architectural and attitudinal barriers prevented people with disabilities from fully participating in community life. Press coverage included local newspapers, a spread in the Style Section of the Post, and local TV stories. Many of our participants were local government officials and even state legislators, some of whom, like Senator Richard Saslaw and Delegates Kenneth Plum and Vivian Watts, still hold elective office and are part of the leadership in the Virginia General Assembly.

A Cross-Disability Advocacy Group

Once the Barriers Awareness Day was held, those involved in its planning realized that we, as people with disabilities, could work together to educate the community and advocate for our rights ourselves. After a party to celebrate our success working together, Tony Young, who lived in Springfield, proposed we form a Northern Virginia chapter of a new statewide coalition of citizens with disabilities and begin advocating for equal access and opportunity in our community. And so, we held the first meeting of Handicaps Unlimited of Northern Virginia (HUNV) in November 1980.

The chapter started off with a bang, preparing and mailing an alert which was a call to action for people with disabilities to write and call Congress to ask them to prevent proposed budget cuts that would have completely defunded the U.S. Access Board. The Access Board is an independent federal agency, which Congress authorized when it enacted the federal Rehabilitation Act of 1973 by overriding President Nixon’s veto of the bill.

The U.S. Access Board was created to establish and oversee compliance with accessibility standards for newly constructed federal buildings and facilities as authorized by the Architectural Barriers Act and develop accessibility standards for all federally funded programs whether operated by federal agencies or by private entities receiving federal funding as required by Section 504 regulations.

We spent several weekends at Tony’s house folding, labeling and readying 8,000 alerts to be mailed. It was all part of a national grassroots effort that successfully prevented the defunding of the Access Board.

That first year, we also visited our state legislators in Richmond, provided input into local events to celebrate the International Year of Disabled Persons (IYDP) in 1981, organized a second Barriers Awareness Day, participated in our state convention, and held a debate on disability issues for state legislators running for office.