Jay Johnson—that maddening, loud, annoying, hard-headed, crude, big-hearted, generous guy—was my friend. He died on July 4th, 2001. I never planned to make this guy my friend. It just happened.
What a gift it was to be friends with Jay—and from time to time, what a curse. Life in proximity to him was not dull—maddening and scarey, yes, and also fun and energizing—but not dull. He was a guy who left no one feeling neutral about an issue or about himself. After being with Jay, you may have been happy, sad, excited, angry, or any other strong emotion, but it was very hard to walk away feeling neutral.
Back in 1986 I was involved in the founding of the Options Interstate Resource Center for Independent Living, located in East Grand Forks, Minnesota. I was one of the original board members, and it was there that I met Jay. He was one of those guys I’d seen around the Rehab Hospital, but did not really know.
One thing that impressed me about Jay right from the beginning was his absolute belief that we could pull off this undertaking of creating an entirely new organization. I was also impressed by his love of hearing himself speak.. That man could say in 100 words what I could not stretch to more than 10—what a gift! Over the years I heard him use that gift to motivate, advocate, entertain, offend, comfort, annoy, reassure, and inform.
And we did pull it off. Options was begun with funds from North Dakota’s Office of Rehabilitation, Minnesota’s Department of Rehabilitation Services, and the Northwest Minnesota Initiative. What a wild ride it has been.
Jay loved Options. He loved Independent Living (IL). He vowed that Options would not be so driven by the demands of granting entities that the Center would lose its focus on consumer control and advocacy. Jay was determined that Options would not become “just another human service agency.” He wanted Options to be the place that welcomed people with disabilities to use their abilities to live as independently as they chose, in the community of their choice.
Living His Beliefs
Jay put our “Peers Helping Peers” motto into action every day. He greeted consumers as friends, as people worthy of respect. People who came through the door regularly would inevitably be given a nickname. (Some of his names were not suitable for print, but they were meant in good fun.) In addition to naming people he also tended to take on any accents others had. If he hung
out with a person who had a southern accent it would not be long before he himself spoke with a drawl. Many people might be irritated by this, seeing it as just another dramatic affectation; at first, I was one of those people. As time went on, however, I came to believe it was one of Jay’s ways of trying on another way of being—of identifying with someone.
Jay valued honest communication. His favorite line was, “If the meat’s bad, you go to the butcher.” He often followed that up with the comment, “If you don’t like what I say, or something I do bothers you, tell me!” Over the years I learned to tell him. I respected him for
demanding my honesty and he respected me for daring to be honest. Our friendship grew.
A Strong Advocate
Advocacy was one of Jay’s favorite activities. Within the states of Minnesota and North Dakota he traveled many miles and many hours to visit the legislatures to gain funds for IL and to support and educate on legislation for people with disabilities in both states. He believed we need to speak up to create choices for ourselves. Jay was fearless when it came to confronting the bureaucracies that too often control the lives of people with disabilities. He liked nothing better than to exchange opinions in public with public figures, and was good at it. With help from his staff and others he put together the most accurate information available to him and spoke from the heart. He did not succeed every time, but he looked at each opportunity as a chance to get a little more information out there, and to gain support from a few more people who could change things.
When attendant service funds were cut Jay instigated a rally at the state capitol where around 200 people with disabilities gathered to draw attention to the need for funds. Many other people worked hard to make that rally happen too, but Jay was our point man. To fire himself up for action I saw Jay roll into the board room, slip a tape in the VCR called “Options, Choices, and Rights.” He spun around, popped a couple of wheelies, and said “Yea! I love that! Now I’m ready!” Then he raced his chair out the door, bristling with renewed energy.
Jay was excited to be part of the national scene. He worked hard for the Americans with Disabilities Act, was a member of the Rehab Act Committee, and he worked to improve Social Security’s Work Incentives. As he learned more about the political process and how to work it effectively he found that involvement to be a heady experience. He was increasingly convinced of an individual’s ability to change the world around him and he became even more zealous in his avid pursuit of legislative change. He developed an even stronger “put up or shut up” mentality. If we were not willing to fight for it he didn’t want to hear us complain about it.
I respect the growth I saw in Jay during his life. He began as a fairly naive, loud, chatty, young guy with a passion, and educated himself to speak with authority, and even eloquence, on issues affecting the lives of people with disabilities. He even learned not to speak when the occasion demanded it—a great accomplishment for someone whose every thought tended to come out of his mouth.
Jay paid attention to the spiritual side of his life and tried to get his life’s priorities straight. He
wanted to take an active part in his son’s life and worked hard at his marriage. He wanted to participate in a church community and found a church home in Sharon Lutheran Church of Grand Forks. At Jay’s funeral the minister read verses Jay had underlined in his Bible. Many people were surprised to learn that Jay not only had a Bible, but that he had read it enough to underline passages that were meaningful to him. I heard someone say, “When did he have the time!?” An interesting question, since most of the stories Jay shared about his life involved IL, work, hunting, and fishing.
If I were to identify qualities I most enjoyed in Jay I’d have to say I enjoyed his energy, humor and relentless belief in his ability to meet a challenge. What I most admired was his fearlessness. What I most respected was his willingness to learn from his mistakes and move head, and also his concern for the well-being of others. What I loved was his many-sidedness, and that I could expect to be surprised. I also loved the fact that working with him and being friends with him gave me the chance to allow his energy and boldness to spill over to me, bolstering me to take my own risks.
What will we do to carry on the important work Jay began in IL and with Options? He shared his passion and his dream with all who would listen. If he could get a direct line from the Hereafter to us, he’d call us on the phone to needle us about getting to work; to tell us of unfinished business; to remind us that people with disabilities are counting on us to keep alive the dream of equal access and choice. Jay would remind us that life goes on and we need to get busy.
So Jay, here’s to you. You worked hard, played hard, and died young. You declared your independence from this Earth on July 4th, Independence Day . We hate like hell that you aren’t around to make us laugh, cry, groan, scream, and help us get up and go on. Options will go on. We will go on. But it will take us awhile to stop hecking your office to see if you’re there. And I don’t know how long we will persist in telling each other to ask for your opinion. Thanks for the friendship, the good work and good times. You were a caring friend and unique human being.
You are missed.