PORTLAND, Ore. -- Tom and Betty West committed their mentally disabled son to a state institution. His name was Richard, and he was three years old. It was 1959. The massive complex was remote and family ties not encouraged. The state eventually moved Richard to a different facility without informing the Wests of the location. Four decades passed without a family member laying eyes on Richard.
![[See more photos]](http://s.wsj.net/public/resources/images/OB-BN693_album1_20080530150724.jpg) |
| Craig Mitchelldyer/Getty Images for The Wall Street Journal |
As they entered their 80s, the Wests thought increasingly about Richard, the fifth of their eight children. How was he? Where did he live? Mr. West wanted to make sure that, following his death, some of his pension flowed to Richard.
State officials rejected Mr. West's request for information, calling Richard's whereabouts private. The Wests hired an attorney who ran into the same roadblocks. "At that point, I thought there is nothing more I could do," says Mr. West, a retired dam builder who is 87.
The Wests belong to a generation of parents who decades ago relinquished their disabled children, usually at the urging of physicians or other authorities. From the 1930s into the 1960s, tens of thousands of these children entered state facilities, which offered services that local communities lacked. Many never saw their families again.
"Fifty years ago, families were often advised to place their child in an institution, and basically told that, for the good of the child and family, to forget that the person existed," says Charlie Lakin, project director of the Research and Training Center on Community Living at the University of Minnesota.
| Back in the '60s, an Oregon family put their mentally disabled child in a public institution, and he eventually became a ward of the state. Recently, the family tracked him to a small group home and hope to retie lost bonds. (May 31) |
Half a century later, that old policy is still haunting families across America. Middle-aged siblings want to find their absent younger brother or sister before it is too late. Aging parents wish they knew what became of their child. Cousins and nieces wonder about relatives known only by name and family lore.
Yet even as greater acceptance and inclusion greet today's mentally disabled children, many of yesterday's remain lost. Privacy laws can prevent families from finding their loved ones. In some cases, facilities have closed, scattering residents into group homes and apartments without family notification. About 40% of residents of large state institutions have no family contact, surveys have shown.
Efforts to help restore lost connections are surfacing. In 2005, Oregon passed legislation and adopted a procedure to make it easier for relatives to track down people who were institutionalized. A dozen other states are studying its approach.
Last summer, Arc, a national advocacy group for the developmentally disabled, created a registry where people can list who they are trying to find. About 290 families have registered, from nearly every state. But a match can be made only if both sides register. Of the 86 disabled adults who have registered, none have been matched to registered families. Among those searching is a 50-year-old woman who learned only in adulthood about the existence of her developmentally disabled twin sister, says Arc.
'Brother Was in Fairview'
One evening in 2005, a television news channel in Portland interviewed a man named Jeff Daly about the discovery of his developmentally disabled sister, Molly, who had been living at Oregon's Fairview home.
Watching TV that night was Jeff West, the youngest sibling of Richard West. Born after Richard left their family home, Jeff West had never met his brother. But he knew all about him, including the name of the first institution Richard had entered. Turning to his wife as they watched that interview, Jeff West said: "My brother was in Fairview."
--Clare Ansberry
At the time she became pregnant with their fifth child in 1955, Betty and Tom West lived in a three-bedroom house in The Dalles, Ore. The pregnancy went smoothly, but the delivery didn't. Richard was blue at birth and immediately put on oxygen, then sent home with assurances that he was fine.
He rarely cried. But as months passed, he didn't roll over or crawl. He showed little emotion or recognition. If Mrs. West walked out of the room, he didn't protest. His older brothers played around him. "He seemed like he was in his own little world," recalls his older brother Steve.
Mrs. West read to him and repeated basic words, hoping he would catch on. Once, she thought he said "Mama," but he never said it again. When she started giving him solid food, he choked. At age two, he weighed 17 pounds. "I knew there was something wrong, but I couldn't pinpoint it," she says.
At monthly checkups, she relayed her concerns to her doctor, who said Richard was fine. As months passed without progress, she insisted something was wrong. Tired of her questions, the doctor told her not to come back, she says.
Second Opinion
Mrs. West found a new physician who examined Richard and concluded he was severely mentally retarded. The physician explained that Richard might learn to walk but would never talk. He would always have the mentality of a three-year-old and need 24-hour care. "It was a relief knowing it wasn't my imagination" or fault, says Mrs. West.
Soon pregnant again, Mrs. West became overwhelmed at the thought of caring for a newborn and a mentally disabled toddler, along with four older kids. The community offered no programs to help Richard. Having come from North Dakota, the Wests had no family nearby. "I didn't know what to do," says Mrs. West.
She asked her doctor. Gently, he told Mrs. West it would be better for Richard and everyone else if he was institutionalized. "You have to think of the other kids," she remembers the physician telling her.
She was numb. It went against everything the young couple believed. They had built a close family. They had come from close families.
In the end, they felt they had no other option. After Richard received an official diagnosis of "idiot" and "marked mental retardation," the Wests reluctantly agreed to send him 130 miles away to Oregon Fairview Home near Salem. A sprawling complex of dormitories and agricultural operations, Fairview was crowded with a wave of baby boomers with developmental disabilities. At mealtime, nurses lined children in high chairs against the wall, feeding the younger ones and taping forks into the hands of older children to encourage use of utensils.
Black-and-White Film
An old black-and-white film called "In Our Care" describes Fairview, showing a porch crowded with children clapping and rolling a ball. "This child spends most of her time tearing paper into shreds," the narrator says.
The day Richard left for Fairview, Mrs. West packed his clothes and dressed him in his best outfit -- a white blazer with a crest on the pocket and dark shorts. She and her husband told the other children Richard was going to a place where he could get special care. "We kind of knew he had a problem that our mother just couldn't take care of," says the oldest, Tom Jr., who was 11 at the time.
At the front office, an administrator recommended that Mr. and Mrs. West kiss Richard goodbye and leave quickly. "It was a terribly difficult day," says Betty West.
To visit Richard, the Wests had to make appointments. They tried to see him at least once in the summer, bringing along the other children. Richard didn't seem to recognize them but held their hands as they played Ring around the Rosie. His younger sister Barbara West remembers the smell of antiseptic and wondering why her older brother slept in a crib when she didn't.
One afternoon, when Richard was about 8 years old, his parents were walking hand-in-hand with him down the sidewalk. An older woman approached and held her hands out. Richard wriggled free and ran into the woman's outstretched arms. He hugged her, showing affection he had never shown his family. Betty remembers crying and telling her husband it was time to let go.
'Let Him Be'
"He has someone who loves him here. She makes him happy. We need to let him be," she recalls saying.
They continued to send him clothing but never went back to visit.
"He didn't know us," says Mrs. West.
"That was the only thing that made it bearable," says her husband.
In the West home, Richard became a powerful memory. The youngest child, Jeff, saw various photographs of the brother he'd never met -- Richard on the floor with his older brothers, Richard at the pool with their mother, Richard dressed up the day he went to Fairview. His parents had told Jeff why Richard didn't live at home. "They never shied away from talking about him," says Jeff.
No Forwarding Address
None of the children pressed their parents to find out how Richard was doing, although privately they wondered. "Anytime the family was together at Christmas or Thanksgiving, I would think how we used to play around him on the floor," says his older brother Bob.
In the 1980s, the state informed the Wests that Richard was being moved a couple hundred miles east to another state facility. A few years later, the Wests received a letter saying Richard was being placed in a smaller residence. The letter didn't say where. The Wests felt they lacked standing to ask because their son was a ward of the state.
He had, in fact, been transferred to a group home in Baker City, about 300 miles away. There, workers wondered about Richard's family. "Do they know he exists? Do they care?" says caregiver Tracy Hylton. "Many families don't want to have contact, and when there isn't any contact, we have to assume that is the case."
The turning point came the evening that Jeff West saw the television interview with Mr. Daly, the Oregon man who had found his long-lost mentally disabled sister. Suddenly, Jeff West was struck with the desire to find Richard.
Other siblings, however, were apprehensive. "Do you really want to do that?" brother Larry remembers saying. "Are you going to bring up things that are hurtful?"
Debby Peery, the second-youngest, wondered what their responsibility might be and how others would react.
"I was a little nervous about what the caretakers would think of us suddenly showing up after 40 years," she says. "But I was also excited."
All worried about their parents. "I didn't know how much guilt they carried," says Jeff West. At that point, Jeff didn't know his parents had recently and unsuccessfully tried to find Richard so that he could receive Mr. West's pension.
When asked about tracking down his disabled son, the elderly Mr. West responded, "Go for it."
40 Years Later
A flurry of phone calls followed. Jeff West talked to Mr. Daly, who gave him phone numbers of agencies with group homes. One was in Baker City. Jeff West provided his parents' Social Security numbers and Richard's date of birth to verify he was family. The woman at the group home said Richard was there.
Weeks later, the family met with Richard for the first time in 40 years. His caregivers, Ms. Hylton and Carrie Baird, drove Richard to the home of a sibling. They worried whether the West family would take Richard away from his group home, where he was comfortable and loved. "It would have been hard for us if he left," says Ms. Hylton.
Likewise, Mr. and Mrs. West felt anxious, not knowing whether Richard would want to see them or be angry. "I didn't know how he would take to us," says Mr. West.
Richard walked in, holding a Sponge Bob Square pants book with buttons that played songs. His parents sat on one couch. He sat on another, next to Ms. Hylton and Ms. Baird, holding their hands. He looked around the room, his face registering no apparent emotion. Mrs. West held back the urge to hold him. "I would have loved to given him a hug," she says. "But they said don't touch him because he won't like it."
Dates at McDonald's
Over lunch and through the afternoon, the Wests listened to Ms. Hylton and Ms. Baird describe how Richard loves music, does his own laundry, washes dishes, mows the lawn and sets the table. He has a job refilling ink cartridges. And a girlfriend: On dates to McDonalds they eat apple pie. Always known to his family as Ricky, he now preferred to be called Richard.
The Wests told stories about Richard's younger years and their struggles to help him. Richard grew restless and pressed a button on his book that is his signal to leave. He walked outside and got in the van.
Mr. and Mrs. West thanked Ms. Hylton and Ms. Baird for taking good care of Richard. The Wests say it eased their minds to see Richard healthy and seemingly content.
A few months after visiting Richard, Jeff West received Richard's signed permission to look at his records at Oregon's Department of Human Services office. Going through them helped the family piece together the unknown part of Richard's life. Some was reassuring. Some wasn't.
At Fairview, Richard learned things his parents never thought possible. By 12, he could dress, feed himself, catch a ball, fold pajamas and fish. He had friends and foster grandparents who took him out for ice cream. At 16, Richard taught himself to whistle. He loved Volkswagens and was sometimes found sitting in one in the Fairview parking lot.
Then there were glimpses of what they envisioned institutional life would be like. Over the years, Richard would run away and get in trouble for hitting. He was often put on Thorazine to sedate him.
Like Oliver Twist
Most troubling were the annual photographs of him behind a board saying, "Richard Alan West, Case 5727." In the photos, his face is thin and expressionless. The images reminded his parents of orphans begging for gruel in Oliver Twist. "That doesn't look like a very nice life," says Mr. West.
The records also contained references to the times that the Wests visited Richard. The documents said Richard had become visibly upset and withdrawn following their departure -- suggesting that he had known them better than they had realized. "These were things we didn't know," says Mr. West.
Now, Richard receives regular calls, letters, McDonald's gift certificates and visits from his family. Last summer, the family drove four cars to Richard's home. This summer, the Wests are hoping to have Richard home for a family reunion.
Mrs. West sends Richard towels and sweatshirts embroidered with his name. When getting dressed in the morning, Richard selects the same shirts repeatedly -- the ones his mother sent. "He knows it came from his family, and it means something," says Ms. Hylton.
Write to Clare Ansberry at clare.ansberry@wsj.comOriginal here
Posts
No comments:
Post a Comment