Michael Phillips, Tampa disability advocate, dies at age 39

“Michael never stopped communicating," his mother said. “And he never stopped caring,”
Karen Clay, left, operates a medical ventilator to help her son Michael Phillips, right, breathe. This photo was taken in their Tampa home in 2017. Phillips died Wednesday at the age of 39.
Karen Clay, left, operates a medical ventilator to help her son Michael Phillips, right, breathe. This photo was taken in their Tampa home in 2017. Phillips died Wednesday at the age of 39. [ "ALESSANDRA DA PRA | TIMES" | Tampa Bay Times ]
Published March 26, 2020|Updated March 26, 2020

TAMPA — Michael Phillips, a lifelong advocate for people with disabilities who broke barriers at school and in adaptive research, died at home on Wednesday evening. He was 39.

Mr. Phillips lived in Tampa with his mother, Karen Clay, who was his caregiver and a well-known activist for disability rights.

The cause of death is best described as a pulmonary embolism, Clay said. Paralyzed to varying degrees for most of his life, Mr. Phillips breathed through a tracheal tube.

During routine maintenance of his tracheal equipment, he bled uncontrollably. Rescue workers rushed him to St. Joseph’s Hospital, the mother said, but it was too late.

Mr. Phillips spoke through an adaptive computer in a text-like fashion. But Clay said his voice always shone through.

“Michael never stopped communicating. And he never stopped caring," she said. "You know, the 30th of the month is national Doctor’s Appreciation Day and he was planning what to send and give to his doctors.”

Mr. Phillips was born with a severe form of spinal muscular atrophy that limited his mobility from an early age. Doctors did not know if he would live to see his first birthday, his mother said.

Clay fought to have him educated in an inclusive setting. He attended Plant High School, where he worked on the student newspaper. His principal was Vincent Sussman, the former football coach who was later paralyzed himself after a fall from a ladder in 1997. Sussman died in 2013.

Over time, the mother said her son lost the ability to breathe without a tracheal tube, and could no longer speak. He worked with manufacturers of adaptive equipment, testing their effectiveness and demonstrating their use in professional settings.

To communicate, he used the muscles in his forehead to send signals to a computer. He used those methods to blog and write essays.

Together, mother and son were active in Democratic politics and causes.

“He never stopped,” Clay said. “He was always active. He was always posting on his blog, very strong feelings about this administration and the cuts to individuals with disabilities, how they wanted to cut Medicaid and Medicare and Social Security.”

In 2017, he appeared on an MSNBC news program about planned cuts to the Medicaid waiver program, which allows for services to be provided to patients and funded outside of nursing homes.

“I’m scared,” Mr. Phillips told journalist Ari Melber, speaking through a voice adapter. “Scared of what could happen to me. Though I’m quite disabled, Medicaid services allow me to live a full and productive life.”

These and other appearances gave Mr. Phillips a high profile. “People recognized us," Clay said. "Always Mike, not me.”

The coronavirus pandemic made Clay and her son especially cautious. Clay wore gloves just to go to the grocery store.

“I even said to Mike, ‘we’re going to be fine,' she said. "‘We’re going to continue to get your waiver. We’re not losing our jobs like anybody else.’ This was just totally unexpected. No hints, nothing.”

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The two were at home when he fell into medical distress, watching the movie “Kinky Boots.”

Phillips is survived by his brother and sister-in-law, Brian and Jenna Clay; his niece, Katherine “Kit-Kat” Clay, and his stepfather, Randy Moore.

“Not only was Mike a fierce advocate for persons with disabilities,” Brian Clay said. “But he was also a loving brother and son above all else.”

Given the new protocols brought on by the coronavirus crisis, Clay said they don’t yet know how when she will be able to hold a memorial service for her son.

Said the mother: “I want to celebrate his life, I really do.”