University of Hawaiʻi at Mānoa master of social work student Daintry Bartoldus arrived late for her academic appointment, accompanied by an elderly woman carrying an empty plastic cookie container that she tapped softly to her face. During the advising session, the woman etched the lid with an unbent paper clip, and then colored it with a marking pen. “She draws these faces, some sad, some happy,” Bartoldus remarked.
Alice Kamaka is 71, deaf and autistic with cerebral palsy and developmental delays. For the past two decades, Bartoldus, 44, has been her legal guardian.
Bartoldus arrived in Hawaiʻi from Oregon in 1989 to pursue a master’s degree in library science. Working as resident manager at a community-based group home for the behaviorally and mentally challenged, she visited Waimano Training School.
The state’s largest institution for the mentally challenged was following a national movement of deinstitutionalizing, releasing some residents designated “very profoundly retarded.” Kamaka had been at Waimano for 48 years, placed there under the jurisdiction of the Department of Corrections at age three. Bartoldus was profoundly disturbed by the situation. Nearly half the residents were Native Hawaiian, she explained. “To me, it was legalized prejudice. She wasn’t a danger to society. She had done nothing wrong.”
Kamaka was moved into the group home where Bartoldus worked. “I had fixed up a room for her. I painted it, made up her bed, put a night light on for her. But when I left her alone, she wouldn’t stop crying,” Bartoldus recalls. She understood Kamaka’s fear when she read about documented beatings, use of restraints and sexual assault in Kamaka’s file. For weeks, she sat in the room at night so Kamaka could sleep.
Five years later Bartoldus was promoted to case manager and moved out. She took Kamaka on outings, but Kamaka became increasingly difficult to manage when returned to the home. The staff disallowed the visits and tried to increase Kamaka’s medication, which was already causing irreversible side effects. When Bartoldus protested, she was challenged to become Kamaka’s legal guardian if she thought she could do better. Bartoldus was surprised at how easy the paperwork was.
“I was 26, stupid and didn’t know what I was doing,” she says in retrospect. “The first few weeks, I nearly killed her,” triggering serious side affects by stopping some medications. It took six years for doctors to find the right medicines and dosages.
Bartoldus met Kamaka’s mother, who said she had repeatedly tried to regain custody and had been restricted from visiting. Kamaka’s parents were half-siblings and poor. Kamaka’s father was diagnosed as “slow” and placed in Waimano, where he died two years later. By the time Bartoldus could arrange visits, Kamaka’s mother was elderly and had developed dementia. She has since passed away.
Bartoldus lives with Kamaka’s constant noises. She must sleep with her bedroom door open in case Kamaka gets into mischief at night. She keeps a lock on the refrigerator to keep Kamaka from eating uncontrollably. She has missed conferences and other events because Kamaka grows anxious if she is away for more than four days.
It wasn’t the life Bartoldus had envisioned, and at 40 she went through a period of depression, feeling trapped by the decisions she had made as a very young woman. Now, however, she cannot imagine life without Kamaka, saying, “I love her. I could never have abandoned her. She is so likeable. Her joy is contagious. There is no pretense.”
Bartoldus completed her MSW at the Myron B. Thompson School of Social Work in 2009 and continues to work for the state Developmental Disabilities Division. While she has lost some of the friends she had prior to becoming Kamaka’s guardian, she finds the friendships she’s made to be much more meaningful.
“In some ways, Alice has been a filter. She has saved me from relationships that may have not have been as healthy. I asked God for someone who would give me unconditional love. Maybe I should have given God more details, been a little more specific, but here she is.”