IN REMEMBRANCE OF STEPHEN LEO JOHNSON
Always a mentor and advocate, Steve embraced life and made it his life’s work to expand disability rights and independent living. In 1967, Steve was paralyzed from a fall. Rather than dwell on his circumstances, Steve moved forward with his education and sought opportunities to work with others with a passion for independent living. He earned a Bachelor of Arts and a Master of Science in Education from Old Dominion University. In 1982, Steve was hired as a peer counselor by Handicaps Unlimited of Virginia. This is the organization that established the Endependence Center, a disability advocacy organization that Steve went on to become Executive Director until his retirement in 2018.
Steve was appointed by Governors to the Statewide Independent Living Council (1993 and 1997) and the Virginia Board for People with Disabilities (1989). He was also appointed to serve on the National Steering Committee of the Rehabilitation Research and Training Center on Independent Living Management (2000), Sentara Trauma Center Task Force (2003), Virginia Beach Mayor’s Committee for the Disabled (1984), Virginia Beach Parks and Recreation Commission (1992), and Virginia Mayor’s Committees/ Commissions for People with Disabilities (1987).
Steve was involved in hard and long fought battles for the Virginians with Disabilities Act and the Americans with Disabilities Act (ADA). After these laws were enacted, he led ECI’s efforts to educate the community about these laws. Access to the Virginia Beach oceanfront, Harbor Park Stadium, schools, Town Center, the Virginia Beach amphitheater, The Spirit of Norfolk, and Virginia Zoo occurred with Steve’s leadership. Community living for hundreds of people with disabilities who have left institutions is possible due to Steve’s encouragement and commitment to changes in services.
Knowing firsthand the importance of quality supports, Steve led statewide advocacy efforts and a pilot project to establish the first consumer-directed personal assistance services in Virginia. Today over 25,000 Virginians use consumer-directed personal care services to control their supports.
Funding to expand advocacy and other independent living services were made possible through collaborations Steve established and maintained with the following: localities of Chesapeake, Franklin, Isle of Wight County, Norfolk, Portsmouth, Suffolk, and Virginia Beach; Hampton Roads Community Foundation; Hampton Roads Transit; local hospitals and insurance systems; Mid-Atlantic ADA Center; public housing agencies; and Senior Services. Striving to establish needed services used by people with disabilities, Steve worked to establish fee for service agreements with state agencies that provided funding to not only ECI but other Virginia Centers for Independent Living. An early pioneer of teleworking and the belief that teleworking could be beneficial to people with disabilities, Steve initiated involvement in a project with the Commonwealth to establish telework practices.
Achieving financial stability for ECI, Steve ushered a process to establish Endependence Properties, a private nonprofit that purchased the building that ECI now uses.
Steve had a manner of promoting and praising ECI, but never his role. He treated everyone with respect and valued teamwork. His mentoring of other advocates over the years made ECI a strong organization respected throughout Virginia. Steve was a leader within the Virginia Association of Centers for Independent Living. He mentored new Center Executive Directors and endeavored to find consensus on challenging disability issues.
Steve’s leadership influenced nearly every local community service, public accommodation, and government program over the past 30 years. Steve had a unique style of working with participants and staff encouraging them to find their passion and to have the tools needed to live that passion.
In addition to a life of advocacy and leadership, Steve enjoyed his family life with his wife, Linda, their children and grandchildren, and his siblings. He was a Philadelphia Eagles fan enthusiast, enjoyed the beach, and was an occasional prankster.
Steve’s career as an advocate resulted in significant changes throughout Virginia, paving the way for independent living.
I met Steve Johnson almost 30 years ago when I joined the Endependence Center’s Board of Directors. He was the current Executive Director. I learned quickly how the many qualities of an accomplished Executive Director came to play on the job. Steve was engaging, efficient, well-spoken, organized (mostly), and he really knew how to network. Steve treated everybody with respect whether it was an ECI participant, Mayor, Governor, staff, or Board member. It didn’t matter, all were treated the same. Steve did his job, with the plethora of responsibilities, day in and day out while being permanently quadriplegic, how incredible was that. I’m sure many of you know what that means. Steve believed strongly in the independent living movement. He strove tirelessly to be an example to anyone that asked the question; “… can a person with a severe disability function in our society”. Not only did Steve function he excelled. As I look back, the only time I ever disagreed with Steve was over which defense was better the Eagles or the Steelers. Of course, since my wife is from Pittsburgh it was the Steelers, sorry Steve. I will miss my friend.
For me personally, the best way to describe Steve Johnson is, he was a “Peer Counselor’s Peer Counselor”. For me, the 1980s was a decade of destiny as I made life-changing decisions and always sought Steve’s advice and counsel. The first one was deciding whether to apply for a full-time Peer Counseling position at the Center against a lifelong friend who had recently married. At first, I hesitated because I thought my friend needed a full-time job more than I did. When I talked with Steve about it, he said it was not being disloyal to compete against a friend, if I believed that I was the best candidate. So he encouraged me to be true to myself. So I interviewed and got the position. Next, I was dating a wonderful gentleman, who happened to be a participant in the program and his counselor had recommended to Steve, he should be on my caseload. When Steve asked me about it, I hesitated a few seconds because I had never come out about my lifestyle to Center staff. But when I told Steve the reason it was not a good idea, he totally accepted it without judgment. He just smiled and said he may want to vent about this new character in his life to someone else! Lastly, when I was considering a job offer a hundred miles from friends, family, and a secure job Steve was there again with support and encouragement. Of course, that might be because he would be getting rid of one of his headaches, GRIN! Seriously, he knew my passion for systems advocacy and said that’s where you need to be! Now you know why I consider Steve as a “Peer Counselor’s Peer Counselor”!
For many years beginning in the early 1990s, I benefited from my interaction with the staff of Endependence Center, Inc. and grew in knowledge of disability law and disability advocacy services available from ECI. Steve Johnson was the steady hand behind the scenes as ECI provided the core services as Virginia’s largest Independent Living Center. I benefited from numerous workshops and parent groups organized by the staff. The staff of ECI, working with Steve’s guidance, provided intensive training in areas of federal and state law on many topics, in which I learned a great deal about the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), Section 504, and other laws.
Steve and long-time Board Chair, Michael Wang, performed the hosting and master of ceremonies duties for ECI’s annual meetings. They were a congenial duo, often punctuating their introductions of events and speakers with funny quips and a welcoming presence.
When I was recruited as a member of the Board of Directors of ECI by Steve and by Maureen Hollowell in 2010, Steve took it upon himself to conduct training sessions for me and other new board members to learn about the history of the independent living movement and its growth over the decades. I recall Steve discussing with gentle humor his own growth as a person with a disability to understand his rights and opportunities. Over the years and many interactions with Steve, I appreciated his easy-going manner and practical wisdom about the operations and challenges facing ECI.
Steve and I had many pleasant chats about a variety of things in our personal lives as well. We discussed current events and American history. Steve even gave me as a gift, a set of the Ken Burns DVD documentary on the Vietnam War. We shared memories and concerns about our country.
In the early spring of 2018, ECI began the task of recruiting and selecting the next Executive Director of ECI to take over upon Steve’s retirement after 38 years at the helm. I joined a couple of other Board Members on the selection committee. It was during this time in particular that I came to value even more Steve’s insight and wisdom on the many qualities needed to manage such a diverse operation as ECI. When the committee eventually recruited our current Executive Director, Nichole Davis, and she began work in September 2018, Steve was willing to stay on awhile to provide for the transition phase, something we on the Board felt was important.
Steve’s abundant leadership qualities and empathetic interactions with local city councils, Virginia government, and the national Independent Living movement, all contributed to the tremendous value that ECI provides to our communities today. I will personally miss him very much.