A Mother’s Struggle : Doors Opened for Latino Parents of Retarded Children

When Angelina Viramontes’ 6-year-old daughter, Ariadna, contracted encephalitis, Viramontes moved into Childrens Hospital and did not return home to her husband and four other children for the 10 months Ariadna remained hospitalized.

After doctors told her that Ariadna had suffered brain damage and might remain “a vegetable” the rest of her life, she took the spasmodic, drooling child home in a wheelchair and single-mindedly devoted herself to teaching her to eat, talk and walk again, the mother said.

Over the ensuing months, to the surprise of physicians, the child recovered control over most of her faculties. But when Viramontes tried to send Ariadna back to school, she discovered that her battle to rehabilitate her daughter had just begun.

Obstacles Overcome

A hefty woman with little formal education, but with a commanding presence, Viramontes set out to gain the best available services for her daughter. The decision set Viramontes--a Spanish-speaking homemaker who seldom left her home, did not drive a car and had had no dealings with government agencies--on a course that for more than a decade led her through a bureaucratic maze of agencies serving the mentally retarded.

The trail led from downtown offices to the waiting rooms of state officials in Sacramento, and back to her neighborhood, where she became a leader among Latinos in South-Central Los Angeles and adjoining communities who were seeking similar services for their handicapped children. The area, officials said, has the highest estimated concentration of developmentally disabled people in California.

Progress Prevents Aid

Ariadna was initially denied services by the South-Central Regional Center for the developmentally disabled, one of 21 nonprofit, government-funded corporations throughout California that supervise services for the mentally retarded and those with such disabilities as epilepsy and cerebral palsy. Viramontes was told that Ariadna did not qualify because she had almost completely recovered from her illness.

But Viramontes would not take no for an answer. She told anyone who would listen that “by investing in my child’s future now, they would save the expense of having to support her for the rest of her life,” she recalled.

A few years later, in 1977, Ariadna was accepted as a regional center client and provided services that included placement in a series of expensive private schools for the handicapped.

Summer Graduation

The combined efforts of Viramontes and the agency paid off: Ariadna, now 18, will graduate this summer with her class from Jordan High School in Watts.

But Viramontes’ work continues.

Recalling the frustration of trying to communicate with an English-speaking bureaucracy that made few provisions for the rapidly growing number of Spanish-speaking residents in the center’s service area, Viramontes worked to organize Rehabilitacion Latina Unida (United Latino Rehabilitation), a group of parents of developmentally disabled children aimed at providing mutual aid, as well as lobbying for services.

“They simply didn’t provide the services that people in the area needed,” Viramontes said. “When Spanish-speaking parents called the center, there was no one they could communicate with. When social workers came to the house, the parents often didn’t know who they were or why they had come. So they wouldn’t open the door.

Social Workers Helped

“We needed help, so a few of us started getting together,” she recalled. The fledgling group was assisted by Latino social workers at the center who helped set up meetings to inform the parents on topics ranging from medical and therapy services to Social Security and immigration problems.

The regional center system, which came into existence as a result of legislation in 1971 that made the state responsible for the care of the developmentally disabled, has generally encouraged the participation of its clients’ parents, who by state mandate must be included on the centers’ boards of directors. The South-Central center serves 10 communities from Maywood to Carson, in addition to South-Central Los Angeles.

Government Was Feared

Because many Latinos in the area are recent immigrants to the United States, are poor and unfamiliar with--if not fearful of--government agencies, the parents’ organizing effort has been fraught with difficulties, Viramontes said.

Nevertheless, the organization counts the more than 1,000 Latino families served by the center among its members. Viramontes also has been instrumental in organizing a statewide council of Latino parents’ groups that lobby for their children.

Today, Viramontes and three other Latino parents sit on the South-Central Regional Center’s 17-member board of directors, the policy-setting body that oversees operation of the agency and its $18-million annual budget. Interpreters attend all board meetings, which are now conducted in both Spanish and English.

“There’s a saying that in order to rearrange the furniture, you have to get inside the house first,” Viramontes said.

One Bilingual Worker

When Viramontes first sought help from the center in 1975, there was one bilingual social worker at the agency. The center now employs 150 workers. Twenty-eight per cent of those who deal with clients are bilingual, which approximates the 30% proportion of Latinos among the agency’s nearly 3,200 clients living at home. About 1,800 additional clients are housed at community-care facilities and state hospitals.

Although the agency’s top administrator, Ruth Creary, maintains that the hiring of Latinos came at her initiative, she conceded that Viramontes’ strong advocacy “keeps us right in tune.”

“She’s helped to sensitize me and other non-Hispanics into the cultural realities in the Hispanic family,” Creary said.

High Birthrate Cited

According to Creary, poverty and poor nutrition, coupled with high birthrates, especially among adolescents, contribute to the high-risk health factor among the area’s predominantly black and Latino population. Studies project that as many as 45,000 people in the area could be developmentally disabled, she said.

Yet, she added, the state per capita funding for the center has been among the lowest in the state system.

Viramontes’ greatest accomplishment, according to Creary, has been passing on the lessons acquired during her battle to rehabilitate her daughter, thus easing the way for others.

‘Humble, Rural People’

“You have to understand that most of the (Latino) parents in this area are . . . humble, rural people from Mexico’s small towns and outlying provinces,” Viramontes said. “There are many problems. Unemployment, housing. . . . (Many) are not entitled to welfare or Social Security benefits.

“But I’ve always told them not to be ashamed to ask, that they’re not begging. ‘You’re paying taxes, gas, rent. It’s up to us to ensure that the persons in whose hands we place our children are responsible and giving our children what they need.’ ”

Viramontes recalled visiting a home where she found a mentally retarded young woman who was left in the care of her 5-year-old brother while their mother worked.

‘Can’t Change World’

“She was sitting in a corner of the room, eating and lying in her own excrement,” she recalled. “When I went home and told my husband, he said, ‘You can’t change the world.’

“I told him, ‘You don’t have to change the world to help, just try to help each other.’ ”

Through the parents’ group, families help each other with transportation and by taking care of each other’s handicapped children during emergencies or for longer periods while a family goes on vacation. They also give each other leads on jobs and housing, and pool what little money they can raise, through donations and raffles, to help in emergencies such as accidents or a child’s funeral.

Depression Is Common

“A lot of times, we just call each other for emotional release. It helps to know we are not alone,” she said. “Depression is very common among the parents.”

Also common are mothers who are “submissive and resigned to their pain,” Viramontes said with a hint of vexation in her voice over traditional cultural values that can get in the way of building a strong organization.

“In order to get some of the mothers to attend our meetings, I’ve had to ask permission from their husbands, pick them up at their homes and tell their husband what time I’m bringing them back,” she said. “One of my goals has been for us to teach each other that our work isn’t just with our children or just to obey our husbands, but that we are independent human beings. Partners with our men, yes, but not exclusively theirs.”

Men Taking Part

While women were initially the most active in the parents’ group, Viramontes said that men also participate now.

Viramontes takes special pride in other traditional values, such as the overwhelming tendency among Latinos--unlike the general population--to care for their mentally retarded children at home. It is a pride that helps to temper the guilt that Viramontes sometimes feels over having dedicated her life to Ariadna at the expense of her husband and her other children.

“Institutionalizing our children is something that Mexicans can’t fathom,” she said.

That is why one of her goals is pushing for greater services and financial assistance for families who keep their children in the home, she said.

A parent who has cared for her mentally retarded 15-year-old son at home all his life, speaking to Viramontes during a recent visit together, recalled being advised by doctors to institutionalize the child when he was born.

Nothing Was Explained

Elvira Ruiz said she did not recall much more through the emotional numbness that followed the child’s birth. But one thing was certain--she was taking her son home.

Still, she added, an old anger strengthening her voice, “Nobody explained anything to me. . . . I feel that I lost a lot of time because I didn’t know what to do for him. I’d never known a mother with my problems.”

The family received little assistance through government programs until the child was 6, when Ruiz became acquainted with the regional center system, she said.

“That’s when I learned what was possible,” she said. “Mrs. Viramontes taught us to fight for our children and to defend ourselves. Before, when I asked for something for my son and I was told ‘No,’ I would accept it.

“I don’t accept it anymore.”