Recently, Rev. Saburo Masada spoke at the Tule Lake Pilgrimage (his speech was reprinted in The Rafu, July 24, 2014) and touched upon the tragedy his family suffered when his father died just three weeks after arriving in camp, having contracted pneumonia in the freezing weather of Jerome. “The day he died, the pot-bellied stove showed up in our barrack, too late,” remembered Rev. Masada.
In describing the feelings that came up 20 years later after watching a documentary on the incarceration and suddenly realizing the horrible toll it took, he went from believing that camp was (as some had said) a “blessing in disguise” to understanding that it was only because of “courage, faith and determination” that JAs triumphed over these horrible circumstances.
It turns out that camp was just one small stepping stone along the way for Saburo and his wife Marion, who have faced adversity many times over. Having raised two special-needs daughters, they exhibit their own brand of courage, faith and determination, but they are equally blessed with kindness, openness, a willingness to learn and a lot of understanding. It’s a family situation that would have destroyed the best of us, but these two people talk about their lives with constructive wisdom and optimistic humor that is downright contagious.
When I first met Marion, I saw a sparkle in her eye that completely disguised every hardship she may have encountered in her 80-some years. When she introduced me to her 54-year-old daughter Clarice, I was surprised to see the face of a much younger woman with somewhat childlike speech. Later, Marion pulled out a small notebook with drawings by another older daughter, Alisa, and told me that that both children were developmentally disabled. I could only imagine the difficulties Marion faced raising two small children with what was once termed “mental illness,” but in my wildest imaginings I could not begin to know the trials she endured.
After her daughter Alisa suffered a seizure at 6 months old, Marion was told time and again that there was no cure and that they should put Alisa in a state hospital in Utah and “forget about her.” All Marion could do was cry as she looked at the sweet smile on Alisa’s face. After deciding to take on the enormous responsibility of caring for Alisa themselves, Sab and Marion had to learn what they could do to teach her and where to find the best help for her — something that most parents, especially Japanese Americans, are completely ill-equipped to do.
As for their second daughter, it wasn’t until Clarice was a sophomore in high school that she began to exhibit signs of a brain disorder. She told her mother one day after coming home from school, “Either I have to quit school or I’m going to have a mental breakdown.” Marion said they “left no stone unturned” in trying to find help for their daughter, who began to suffer from hallucinations and paranoia. For example, when they would go to a restaurant, Clarice would turn to the next table and say, “Are you talking about me?” It took a while as parents to understand that Clarice’s problems were not her or their fault (or as some conservative Christians would say to them, “the work of the devil”), but rather the result of a physiological brain condition.
Through persistence and hard work, Sab and Marion were able to find excellent care and treatment for their two daughters. Today, Alisa lives in a facility in Mission Viejo near their third daughter, Michal, who shares in overseeing her. Not only does Alisa live away from her parents in a board-and-care, but she also has a job through a program called Vocational Visions, which even accompanies her at the workplace while she folds napkins, wipes tables, or unloads boxes.
Clarice lives in an apartment in Stockton (away from her parents in Fresno) and supports herself with the help of financial aid. Considered a “success case” by her psychiatrist, she continues to be treated by him to this day at no charge.
Thankfully, due to modern medicine, excellent treatment and programs for the developmentally disabled, the Masada family has learned a lot about the care of special needs children. They even started a Christian camp 40 years ago for Asian American kids. Rev. Masada, retired since 1995 after 26 years as minister of the Calvary Presbyterian Church in Stockton, recalls the difficulty of finding such children back then. Today, the camp boasts up to 40 kids a year — including Buddhists and Christians.
Marion points out, “I’ve been concerned about families keeping their handicapped adult at home with aging parents and expecting a sibling or relative to take on the care after the parents pass away.” Hoping to get past cultural stigmas and “hang-ups” of Asian families who feel it necessary to take care of their children themselves, Marion stresses the importance of finding good homes where the children can function well on their own.
It has also been a dream of Marion’s to publish artwork that Alisa created when she was 5 years old. To accompany the art, Marion has written poems that provide a sympathetic mother’s interpretation of feelings that are expressed through her daughter’s drawings. The verses are deeply felt and provide a window to the feelings of intellectually disabled children in hopes of better understanding them.
If you are interested in seeing this wonderful body of work in print, let me know and I’ll be happy to pass it along to them.
Sharon Yamato writes from Playa del Rey and can be reached at [email protected] Opinions expressed are not necessarily those of The Rafu Shimpo.