Their Voice

Marilyn Bown, who died this week, was described as a "superhero to the disability population."

The word “advocate” is the same as a noun and a verb. The noun defines “a person who publicly supports or recommends a particular cause or policy” while the verb simply defines the action of “publicly supporting or recommending.”

There is not a word that I know of that is powerful to define someone that surpasses these definitions and who takes advocating to a completely higher level spending their entire life doing it. I cannot find such a word but I know of such a person. Her name is Marilyn Bown and sadly, this week, we lost her.

I met Marilyn several years ago when I began my career with RISE and entered the world of human services. My first encounters with her were simply that of two people that worked in the same building and exchanged pleasantries when they passed. It wasn’t until I had the privilege of interviewing her for an article several years later that I began to form a better understanding of her true legacy.

In August of 2017, I wrote an article discussing the deinstitutionalization that took place in Utah in 1985. The placing of people who had been living in the Developmental Center in American Fork into homes with families occurred mostly due to funding issues. Many of those individuals were not able to return to their families for various reasons, which only left the option of placing them in non-familial homes.

Marilyn Bown was given the responsibility of finding homes and families who would take them. There were many sceptics skeptics who thought it couldn’t be done, but eventually all were placed in homes with families.

Unknown to her at the time, this effort and model would eventually become what is now known as professional parenting. Marilyn often talked about the challenges she had finding enough families and even recalled being in a grocery store and feeling prompted to ask a couple ahead of her in the checkout line if they would be willing to take a child with disabilities into their home and they agreed.

She would also recall that many of these children were disfigured and had severe medical issues, but somehow they were able to find loving families willing to take them in and care for them.

Deb Bowman, fellow disability advocate and close friend, called Marilyn “a powerful force for getting to the heart of the matter and sticking up for the underdog.”

Dr. Gerald Nebaker, close friend and colleague, called Marilyn a “dear friend, mentor, advisor, prodder, inspiration, idea partner and provocateur who did more for people with intellectual and developmental disabilities and their families than anyone in the history of Utah.”

Nebeker also recalls that “at one time, Marilyn could name every person in the state with an intellectual disability and tell you about their family.”

Long time close friend Ruth Simmoneau recalls Marilyn’s legacy extending outside of the borders of our state.

“When my work would take me to various meetings and conventions around the country and people would ask me where I was from, when they heard Utah, they always brought up Marilyn Bown with fondness and respect,” Simmoneau said.

Another longtime friend and colleague, Claire Montoya remembers meeting Marilyn when she worked for the Division of Services for People with Disabilities (DSPD) for help in developing more resources and opportunities for individuals and their families.

“Marilyn’s philosophy,” recalls Montoya, “was you do what it takes to get the supports and services people and their family need to stay a family.”

I am told by her family that Marilyn was once given a Native American name — “Patch and Mend Woman.” Although we couldn’t pin down the details of how she acquired it, they defined her as someone who “senses the breaks and cracks in the bodies and minds of people in her world but treats them as she would beautifully crafted clay pots.” It concludes with “finally with the fire of her spirit and skill, she restores the beauty of the pots and they become useful vessels again.”

There is no disputing that Marilyn spent her life making others better, but I would have to dispute that she ever sees another person as broken. Marilyn saw everyone as equals in this world though some needed a little more help to flourish.

Marilyn was an “earth angel” as described by Nebeker, “a force in getting things done” as relayed by Simmoneau, “a superhero to the disability population” stated Bowman and an “inspiration” to Montoya. She was all of these things but also humbled enough to describe herself simply as an “advocate.”

Fly with the angels, Marilyn.