Steve Mikita, who channeled his own experience with disability to advocate for others with disabilities as an assistant Utah attorney general, has died.
Mikita died March 1, at age 67, according to his family and the Utah attorney general’s office, where Mikita worked for 39 years.
In his time as assistant attorney general, Mikita represented the Division of Services for People with Disabilities, as well as the Public Guardian Office. He also served as the Americans with Disabilities Act coordinator, and handled complex legal cases that called upon his comprehensive knowledge of disability law.
“His work in the disability community and expertise in related legal issues was unmatched in both significance and longevity,” Utah Attorney General Sean Reyes wrote in a statement last week. “His life experience allowed him to serve the state of Utah with incredible insight and compassion.”
John Stephen Mikita was born Dec. 14, 1955, in Steubenville, Ohio, to Dr. William and Mildred Mikita. At 15 months old, his parents were concerned that Mikita could crawl on occasion, but could not stand or bear weight on his feet, according to the National Institutes of Health’s “All of Us” research program. They took Mikita to a neurologist in Pittsburgh, 40 miles away from Steubenville — and the neurologist assured them that Steve was just slow to develop and would be walking soon.
His parents — William, an orthopedic surgeon; and Mildred, a high school chemistry teacher — suspected something more serious. They took their son to the NIH’s center in Bethesda, Maryland, for a battery of tests. Three days later, the family received a terrible diagnosis: Mikita had spinal muscular atrophy, a rare degenerative neuromuscular disease. Doctors said he would not see his second birthday.
Mikita outlasted those early diagnoses, but his medical struggles continued. Throughout his childhood and adolescence, the NIH wrote in a 2022 article, he was hospitalized many times — including once, when he was 12, when he had spinal fusion surgery, a risky procedure that had never been done on adolescents or on anyone with disabilities. The surgery was successful, but the recovery was painful. At one point, he was put in a full body cast for six months, house-bound and prostrate, with an 18-inch bar between his knees. Mikita called it “a turtle-like existence.”
Mikita’s siblings worked to include him in activities. His older brother, Bill, adapted pickup games so Steve could play. In baseball, Steve would bat from his wheelchair, and his younger sister, Judith, would run the bases. In football games, Steve could rush the quarterback in his wheelchair — or wheel out to the end zone, where Bill would aim the perfect pass into Steve’s lap.
Mikita graduated from Sewickley Academy, a private school in Pittsburgh, where he was elected senior class president. He was the first freshman to attend Duke University in a wheelchair, and graduated magna cum laude. He earned his law degree from Brigham Young University.
In the summer of 1976, while an intern in Washington, D.C., he was baptized into The Church of Jesus Christ of Latter-day Saints — the faith to which his mother had converted before him.
In the early 1980s, Mikita worked summers as a law clerk for Sen. Orrin Hatch. Mikita and Hatch had conversations about the Americans With Disabilities Act, which was still just a proposal. President George H.W. Bush signed the act into law in 1990.
Mikita joined the Utah attorney general’s office in 1982, and worked there until his retirement in 2021. Reyes said in his statement that Mikita “was an inspiration to us all and a living miracle embodying grit, perseverance, faith, family support and unending optimism.”
Mikita wrote two books, both memoirs — “The Third Opinion” in 2000, and “I Sit All Amazed: The Extraordinary Power of a Mother’s Love” in 2011. He was a longtime participant in NIH’s “All of Us” research program, first as a participant and, after his 2021 retirement, as a patient advocate and member of the program’s steering committee.
Mikita is survived by his siblings — Bill, Carole (a reporter and anchor at KSL-TV in Salt Lake City) and Judith Krzyminski — and their spouses, eight nieces and nephews, and 17 grand-nieces and grand-nephews.
Funeral services are scheduled for Saturday, 11 a.m., at the Brighton Stake Center, 2895 Creek Road, Sandy. Viewings are set for Friday, 6 to 8 p.m., at Wasatch Lawn Memorial Park and Mortuary, 3401 S. Highland Drive, Millcreek; and Saturday, 9:30 to 10:30 a.m. at the Brighton Stake Center. A burial will follow the services, at Wasatch Lawn Memorial Park.
In lieu of flowers, the family suggests a donation to the Spinal Muscular Atrophy Foundation.
