At 6:30 a.m. Aug. 8, 1948, my mother felt the first stabbing pains of labor as her second son was about to be born.
"I told the nurse that I had delivered my first child very quickly, and I wanted the doctor nearby," Roslyn Willinger Meyers, 58, recalled. "But the doctor, a family friend, had gone downstairs for a pack of cigarettes. To delay delivery the nurse told me to cross my legs, and I did," she said.
Despite that attempt at delaying birth, her son - and my younger brother - Roger Drake Meyers, who has been retarded since birth, was born at full term, weighing exactly five pounds.
"I've always thought something happened when I crossed my legs, that his retardation was caused by me. There was an oxygen loss, or something happened, although I do recall having a cold for a few days during the pregnancy, and maybe that did it," she said. There were no signs of parental problems, she added.
My mother's uncertainty as to the cause of her son's retardation is not unusual, authorities say. The causes for the retardation of three out of four of the 6.3 million retarded people in the United States are never known, despite the fact that more than 350 causes have been identified, according to Dr. Frank J. Menolascino, president of the National Association for Retarded Citizens (NARC).
Whatever the cause, a retarded son had been born. "It became a fact of life, something we lived with. It became normal for us to have one son who is retarded," said Robert Townsend Meyers, 68, our father.
Our parents used to wake up late at night or very early in the morning, wondering if they had overlooked something, anything, that could be of help. But it was 1948 - it might as well have been 1848 - and there was nothing they could do. It left them despondent and feeling somehow guilty.
"There were no centers then, no place you could go for direct information," our father recalled. "We didn't know what to do, and we didn't know how to do it."
In fact, our parents did not begin to wonder about Roger's physical and mental capabilities until some six months after he was born.
"He was a quiet baby in the daytime, but he cried and cried at night. I nursed him for three months, but after that he wouldn't take it anymore," Mrs. Meyers said. He could sometimes be lethargic or extremely active. He looked to them like "the sweetest baby in the world."
Then, she recalled, "My mother came to visit her grandchildren, and she thought Roger was weak, that he didn't have any strength for finger pulls. I didn't know what to say."
For the next 18 months, our parents 'hoped and prayed' that Roger's responses would speed up, that his strength would increase, that his fingernails would grow (they were never long enough to be cut until he was 8 years old). They compared his progress to mine - I was five years older - and it became apparent that Roger was not developing as he should.
When Roger was 2 they took him to a leading New York City neurologist. his conclusion was that "some retardation may be indicated."
"My first thought was, 'Oh, my God, where do we go, what do we do?" our father remembered.
My mother said, "I felt guilty, I had carried this baby, what had I done wrong? I felt lost and helpless. People - even doctors - told me not to worry, that things would be all right, but they weren't," she said.
That first medical report, written in 1950, carried the implication that Roger's difficulties could be located if only our mother viewed the situation differently. One sentence read, "The mother is too demanding and may be comparing Roger unfavorably with his older brother."
"It was so devasting to be told that there was nothing wrong, or not very much wrong, when you KNOW, you just KNOW . . ." she said.
At the same time, the idea that a drug, or a procedure, or even just the passage of time, would solve their problem was the kid of emotional carrot that led our parents on, though they were frustrated repeatedly over the years.
They had no way of knowing that Roger would turn out to be a married man, an apartment dweller, a job holder, a recipient of government aid.
They were "terrified, terrified" (our mother's phrase) that he would end up in a state mental institution - then the primary repositories of both the severely and mildly retarded. They saw the pictures in newspaper exposes of people there with bent and broken bodies lying half-naked in their own filth, abandoned by everyone except, the flies, and it chilled them.
"Having a retarded child does not have to be the end of the world, but you've got to be able to handle stress well," said Menolascino. "You've got to have good support systems - brothers, sisters, cousins you can turn to - and you've got to have good professional service, which just didn't exist then," he said.
Neither parent knew anyone with a retarded child, and social stigmas kept them from asking too many questions. My mother's family was 3,000 miles away, eliminating them from a supportive role. Strained relations between my father and his sister broke down completely when he felt she was not helpful enough with Roger. They have not spoken in the 25 years since.
"I was so alone, so isolated," my mother said.
Our father threw himself into business, hoping to make a financial killing that would assure his son's comfort for life, while our mother tried to find help for Roger. Continually unable to find a solution, she now and then took one too many drinks.
The additional medical advice they received sometimes seemed to have been written by Franz Kafka, the master of insane "logic." One physician recommended megavitamin therapy. Another said to be thankful they lived in the 20th century, since Roger, who would never read or write, would be able to get all of his information about the world from television.
Another told them of a brain operation in Switzerland which might determine what the brain damage was, although the operation had a high chance of proving fatal. My mother accepted the advice in tearful silence; my father raged at the inadequacy of the advice.
Roger's behavior as a child varied widely. He could be bright and alert, and at other times lethargic, his gaze wandering and his head drooping. He had a soft bone structure, and before he was 5 he had broken both collarbones in falls from bed.
At a park one day a boy on a bicycle ran into him, and he had to have a hernia operation. He had a speech impediment, and it was often impossible for my parents to understand him. At such times I would be the translator, telling them what he had said. Roger would often wake up screaming during the night, and frequently sleep-walked.
"He was so high-strung, trying to keep up with others, trying to make himself understood, that the frustration just came out at night," my mother said.
With my father involved more than ever in his marketing and advertising career, the task of taking Roger from doctor to doctor, from specialist to testing center, over and over again, fell to my mother. Abandoned before she was 10 by her father, the seemingly insoluable problem of raising a son some doctors said was retarded and others said was slow to develop increased her feelings of rejection, she said.
"We'd be walking along, the two of us, and I felt like we were two rejects, him and me. Society had rejected him, and I was rejecting myself. But we had each other to snare our feelings with."
A favorite walking place, after doctors' appointments in New York, was the Museum of Modern Art, and a favorite picture was Picasso's "Woman in a Mirror." She said it shows the face of a woman fractured into a dozen planes and shapes. "Roger was very good at art, and he copied it for me," she said.
It was at this time that two new strains developed in her life, my mother said. One was what she called The Search. It was a 17-year-long attempt to find a residential facility to which the family could afford to send Roger, and it ended only in 1970 when he entered the nonprofit home where he met his eventual wife.
The other was what she described as a reliance on alcohol to ease the pain and frustration and which also ended in 1970 when she joined Alcoholics Anonymous.
His first school was a private school in Queens, N.Y., followed by public schools, often supplemented with private tutoring. They believed he had more ability than showed up on any of the tests he was given (which, in a Catch 22 situation, they were never permitted by school authorities to see), and they attempted to give him as many "real-life" experiences as possible.
"I took Roger to the rodeo, to the circus and took him into work with me on Saturdays. I taught him to say, 'L'addition, s'il vous plait,' (French for 'the check, please') just like I did with you," our father told me.
My mother spent hours with him on his school work and socialization - making sure he knew the importance of the method for brushing his teeth, combing his hair, taking care of his appearance.
There were problems. Roger was teased and taunted at school. "He'd always say 'Well, Mom, I hate to tell you this, but they're making fun of me again,'" she said. Other children laughed at him when he couldn't keep up with them, or they mocked his speech impediment.
There was an incident in Manhattan when a man tried to assault him sexually. "I got so hysterical I couldn't even dial the police. Roger called them himself, and I didn't think he knew how," she said. No arrest was made.
In the early 1960s the advertising agency market dried up for my father. He found himself out of work, with little money in the bank and a retarded son in need of care that was of questionable value and seemed available only in private - and expensive - facilities.
In search of a solution, he tried a business venture in Miami. It failed. They moved back to New York, had no luck and moved to the West Coast, where an expanding economy held out hope.
With their furniture in storage they settled in a furnished one-bedroom apartment, but the manager soon ordered them to leave because as our mother said. "Roger was sitting on the front steps all day, talking to himself and shaking his hands" (a nervous gesture that mental health authorities say often stems from boredom). "Well, a lot of my friends talk to themselves, so I told the manager to stuff it and we left," she said.
She decided she would get a job for the first time in her married life to support her family and, most importantly, to put money aside for Roger. Through a friend, she talked her way into a secretary's position. But there was one problem: she couldn't type.
"I hired someone to type (her work) for me at night," she said. "I paid her out of my salary, which was $2.50 an hour." Then, the next morning at work she would turn in the finished product.
Because a number of people senior to her at work left their jobs shortly after she became a secretary, she was swiftly promoted. And she was given her own secretary to do the typing.
Today she is the manager of the division, handles a budget of $95,000 and earns $18,000 annually.
Our father had found a job as well, and the family moved to a nice apartment with Roger enrolled in a nearby junior high school. There his problems with so-called "normal" kids continued: a gang made him sing and dance in the schoolyard to their jeers. Roger, glad to have the attention, said, "I thought they liked my singing."
A neighborhood tough forced Roger to stand on his shoulders and knock out street lights.A bunch of kids cornered him at a park and made him take some clothes off.
My mother asked the school guidance counselor for help. His answer was to recommended that Roger be warehoused in a state facility.
"That made me so angry, I just can't tell you," he recalled. "All of the work I'd done with him, every book I taught him to read, all of his manners - to throw everything away in some place where he'd be taunted and sexually abused and placed in a corner - never, I never for one minute considered it. I wouldn't have been able to live with myself. I could barely live with myself as it was."
Roger was becoming a young man, really very handsome, with light brown hair which he combed over his forehead, and a willingness to tell everyone he met that he was retarded. He liked to watch movies and sports on television, especially golf, perhaps because it is a game of understandable moves. Horror movies were particular favorites, perhaps because he could watch them without fear, a sign that he had overcome the nightmares of his youth (his all-time favorite is Godzilla). He spent most of his time at home.
He was becoming interested in girls: teeny-bopper princesses with long blond hair. He put their pictures up on the walls and talked to the ones who walked by his house on their way to high school. But beyond that, he had little social life.
"He was lonely, I think that's why he wrote his poetry. He needed to know other kids like himself, but didn't our mother said.
He knew about sex, and often used a then-popular phrase that something was "very sexy" but pronounced the words as if they were "sax" and "saxy."
But the real world could not forget that Roger was retarded, and our family was swiftly reminded of the fact one painful occasion.
In 1968, when he was 19. Roger wrote a Valentine's Day poem to a girl he had met at the local YMCA, at the same time as someone else wrote her an obscene letter filed with sexual references. The girl's parents called police, who, because the mails were involved, called the Federal Bureau of Investigation.
Although the most explicit line in Roger's poem is, "A Valentine is sweet, because it's sharing warm, affectionate love." Roger was tagged as the prime suspect in the case.
An armed police officer went to the sheltered workshop where Roger was employed at 65 cents an hour, and took him into another room for interogation.
"The policeman showed him the letter but Roger had to ask him what the (obscene) words meant," my mother said. Roger was frantic with fear that he would lose his job.
The policeman then showed the letter to my mother, covering up the dirty words. "I screamed that my son wouldn't ever write script (which the letter was written in), that he could only print," she said.
Roger's poem - decorated with large and small hearts - and the obscene letter, were both sent to the FBI for analysis.
The analysis determined that the real culprit was a "normal" 11-year-old boy who sat next to the girl in school. An FBI agent involved in the case later apologized saying, "I couldn't control the local cop. He thought Roger must have done it, because since he's retarded he's suposed to be 'different.'"
Such troubling events were becoming more frequent, as Roger's natural determination to lead a fulfilling life continually banged up against the prejudices of a society which insisted that he was "different."
The agony, however, was not something my parents shared with each other. It went unspoken. "I never told your father about them. I didn't want todisturb him. I felt I had to shoulder the responsibility myself, because it was somehow my fault," she said.
Herguilt drove her on in the seemingly endless search for a residential facility ofr Roger was sent to one promising facility where tuition was $250 a month, but it ended after 18 months, a disaster like so many other efforts. 'The house mother was like a warden from a Cagney movie," my father said.
My mother was drinkin g too much, she said, and fantasizing about starting a facility on her own with help from wealthy people she would somehow meet.
Then, in 1969, while she was talking about her frustrations in the local beauty parlor, she was overheard by an elderly woman who was having a permanent. "She told me about this group of people who raised money for a new residential facility. She said the group was having a meeting that night."
The meeting was the group's fundraising ball, a black-tie affair. Although she didn't have an invitation, my mother talked her way in, met the director of the home, and later went down for a visit.
"There wasn't a good-looking kid there," she noted of the retarded people she saw. "But they all looked clean and happy. And they gollowed the director around, it was like they were following Jesus. I felt Roger could be happy there."
There was a waiting list for the home, however, "I made deals to get him in," my mother related. "They wanted to raise more money, and in my business I know people who know television stars and movie people. I arranged for some of them to come over and help and they could sell tickets that way." My father put his expertise as a advertising copy writer to work, writing free promotional brochures for the home.
Roger moved there March 31, 1970.
His upkeep costr my parents $128 a month, with federal and statefunds never before available to him - picking up an equal portion. Several years later the government funding was increased so that it covered all of lhis costs under the Supplemental Security Income program.
The facility was not the perfect solution, because Roger was one fo the smartest ones there. Initially he was not challenged enough to live up to his potential. But times were changing, and so were the traditional attitudes toward the responsibility of government to provide help. With more and more government money available, there were more and more newly-trained counselors, bringing more and more ideas to challenge the residents to think and act for themselves. They went bowling, hiking, held discussion group meetings. Roger living units on the facility's campus, then into his own apartment, and was married last June.
"When he moved into that facility I could say for the first time in my life that I no longer had to worry about what would happen to Roger when I was gone," my mother said.
Three weeks after he moved to the facility, on April 18, 1970, I was married. With both of her sons now "settled," my mother found that at last she could deal with the stress she had felt for so many years. One of the symptoms of that stress had been alcoholism.
"I didn't start out to have the disease of alcoholism," she said, "but it eased the pain. A retarded son, stress in my marriage, handling a job, finding a place for Roger. I drank to ease the pain, but then I could't stay away from it."
At my wedding reception, she had her last drink, a glass of champagne. The next day April 19, she joined the Alcoholics Anonymous (AA) program and has not had a drink since.
My parent's involvement with Roger was not over,but in their handling of it, a subtle and peculiarly 20th century role reversal took place with my mother the primary breadwinner, my father became the main source of parental support to Roger.
"I had a feeling of remorse that I hadn't spent more time with him when he was an infant," he said. "But there always seemed to be the press of business. And once we knew he was retarded I had this desire to get more than a job, to get some equity, so that when I left this would I would leave something behind for him."
It did't work out that way, though, and he entered semi-retirement holding a parttime job. With the increase in free time, he decided to spend more and more of it with Roger.
At least once every two weeks, and often more frequently, my father drove the 270 miles round trip from his home to Roger's. "I wanted to be with him, to show him be hadn't been abandoned. Some of those people (in the facility), adults like Roger, hadn't seen parents or friends in years."In 1970, for the first time in the 22 years that he had been a parent of a retarded son, my father found a guoup of parents who also had retarded offsprings. he joined the group and became its president.
He read the legislation which was just then being proposed to deal with the developmentally disabled: he lobbied with other parents for their support of the legislation. He started spending more and more time at a hospital center that dealt with the handicapped, and soon started helping other parents of the retarded throught the maze of bureaucratic red tape.
He proposed for himself, and was hired as a parttime consultant to the local hospital, earning for a while $5000 a year, money which supplemented his wife's income and his Social Security payments.
Although the social climate regarding the retarded had changed for the better,l my parents, could not forget the rejection, disappointment, frustration and disillusionment they had experienced during the years they searched for help.
"I used to ask myseld, "Why not? What's so special about me?" my father said. Shortly after the wedding. "It some thing we've lived with, and who can say how our lives would have been different if he had not been retarded. "But I can tell lyou this, that Roger would have reached his potential a lot earlier if the programs that are available now were available when he was growing up."
The wedding of Roger and Virginia was for my parents filled with this same of kind melancholy reflection. Like their new daughter-in-law's bouquet, the memories were mixed. And sometimes the memories were overwhelming.
The wedding was scheduled for 1.30 in the afternoon. At 12.45 my father decided he had to have a sandwich, and a cup of coffee, and then another cup.
As my mother, dressed and ready to go, begged him to leave, my father, 68 years old and having seen a side of life different from what he'd expected to see 28 years before, sat in the motel restaurant near the church, stirring the coffee, watching the steam slowly rise and disappear. He was lost in thought as the minutes passed. The ceremony was delayedfor 10 minutes until they had taken their place in the front pew.