Steve Mikita, longtime Utah disability advocate, dies at 67

Mikita was diagnosed with spinal muscular atrophy as an infant and served in the Utah Attorney General’s office for 39 years.

Steve Mikita, who channeled his own disability experiences to advocate for others with disabilities as Utah’s assistant attorney general, has died.

Mikita died March 1 at the age of 67, according to his family and the Utah Attorney’s Office, where Mikita worked for 39 years.

During his time as Assistant Attorney General, Mikita represented the Department of Disability Services and the Public Guardian Office. He also served as coordinator of the Americans with Disabilities Act, handling complex legal cases that required his extensive knowledge of disability law.

“His work in the disability community and expertise in related legal matters has been unmatched for both importance and longevity,” Utah Attorney General Sean Reyes wrote in a statement last week. “His life experience enabled him to serve the state of Utah with incredible insight and compassion.”

John Stephen Mikita was born on December 14, 1955 in Steubenville, Ohio to Dr. Born William and Mildred Mikita. At age 15 months, his parents were concerned that Mikita could occasionally crawl but could not stand or put 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 from Steubenville – and the neurologist reassured them that Steve was developing slowly and would be walking soon.

His parents – William, an orthopedist; and Mildred, a high school chemistry teacher – suspected something more serious. They took their son to the NIH center in Bethesda, Maryland for a series of tests. Three days later, the family received a horrifying diagnosis: Mikita had spinal muscular atrophy, a rare degenerative neuromuscular disease. Doctors said he would not live to see his second birthday.

Mikita survived those early diagnoses, but his medical struggles continued. During his childhood and adolescence, the NIH wrote in a 2022 article, he was hospitalized many times — including once when he was 12 years old to undergo spinal fusion surgery, a risky procedure that has never been done before carried out with young people or people with disabilities. The operation was successful, but the recovery was painful. At one point he was placed in a full body cast for six months, housebound and lying on the floor with an 18-inch bar between his knees. Mikita called it “a turtle-like existence”.

Mikita’s siblings worked to get him involved in activities. His older brother Bill adapted pickup games for Steve to play. In baseball, Steve kicked out of his wheelchair and his younger sister, Judith, managed the bases. At football games, Steve could charge the quarterback in his wheelchair—or roll into the end zone, where Bill aimed the perfect pass into Steve’s lap.

Mikita graduated from Sewickley Academy, a private school in Pittsburgh, where he was elected senior high school president. He was the first freshman to enter Duke University in a wheelchair and graduated magna cum laude. He received his law degree from Brigham Young University.

In the summer of 1976, while on an internship in Washington, DC, 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 was summer clerkship for Senator Orrin Hatch. Mikita and Hatch had talks about the Americans With Disabilities Act, which was still just a proposal. President George HW Bush signed the law into law in 1990.

Mikita joined the Utah Attorney General’s office in 1982 and served there until his retirement in 2021. Reyes said in his statement that Mikita was “an inspiration to all of us and a living miracle that inspires courage, perseverance, faith, family… support and infinite optimism embodied. ”

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 initially a longtime participant in the All of Us research program NIH as a participant and, upon his retirement in 2021, as a patient advocate and member of the program’s steering committee.

Mikita is survived by his siblings – Bill, Carole (a reporter and host at KSL-TV in Salt Lake City), and Judith Krzyminski – and their spouses, eight nieces and nephews, and 17 great-nieces and great-nephews.

Funeral services are scheduled for 11am on Saturday at the Brighton Stake Center, 2895 Creek Road, Sandy. Viewings are for Friday from 6pm to 8pm 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 funeral will be held at Wasatch Lawn Memorial Park after the services.

In lieu of flowers, the family suggests a donation to the Spinal Muscular Atrophy Foundation.