Jay Johnson 1957-2001: IL Movement Loses a Leader

[Editor’s note: The disability community is saddened by the death of long-time advocate Jay Johnson.  Jay died in a tragic accident on his off-road vehicle on the Fourth of July.  This article is a summary of some of his many accomplishments.  Go to page 13 to read a personal recollection of this remarkable man.]

Jay Johnson was the Executive Director of Options Interstate Resource Center for Independent Living in East Grand Forks, Minnesota.  He also served on the North Dakota Statewide Independent Living Council (SILC) and had previously been a member of the Minnesota SILC.  He was also a member of the National Council on Independent Living (NCIL), actively participating on NCIL’s Rehabilitation Act and Social Security Reform Legislative Subcommittees.

Jay was born on January 14, 1957.  In 1978, he was seriously injured when his motorcycle was forced off a highway.  Speaking about the accident and its effect on his life, he says:  “I came down on top of a barbed wire fence, breaking four wooden fence posts off at ground level with my body.  The vehicle that hit me did not stop, leaving me for dead.  My spinal cord was severed, paralyzing me from the chest down.  This began my life as a person with a disability. After six months in a hospital, I was told that my mother could not take care of me, and I would be referred to a good nursing home.  At 21 years old, that was not an acceptable option.  Instead, I embarked on a different journey: assisting people with disabilities to live as independently as possible in the communities of their choice.  It started with me.” 

After extensive rehabilitation, Jay attended college and graduated magna cum laude in 1984 with a Bachelor of Science in Occupational Therapy.  In 1986, after working as an occupational therapist, he founded Options, a center for independent living that serves people with disabilities living in Minnesota and North Dakota. Under Jay’s leadership, Options has become a local, regional and national leader in the provision of consumer-controlled independent living services.

Jay was an outspoken advocate for effective national policies that incorporate consumer control and choice.  He was a prolific speaker, writer, organizer and trainer on disability and independent living issues, both locally and nationally.  He was involved in many community activities and helped obtain citizen input for community leaders to utilize in the rebuilding of East Grand Forks through his membership on the Community Advisory Response Team (CART). Jay has received numerous awards for his outstanding work in the disability and business communities. 

 The devastating Red River Flood of 1997 destroyed Jay’s home, the Options building and
over a decade’s worth of Options records, books, software and equipment.  After that he worked tirelessly, quickly reopening Options in temporary quarters and assisting people with disabilities affected by the flood.  He is survived by his wife Joy and ten-year-old son Joshua
The information in this article was provided by Options, and edited by Jeff Nygaard

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