By Jay Ruderman
If you think people with disabilities don’t have the right or even the ability to find – and then cherish — their soul mate, this moving article by New York Times writer Jim Dwyer will change your mind in a hurry. And if you think it’s tough for people without disabilities to find their life partner, just imagine the challenges posed by physical and emotional barriers to intimacy. Regular Zeh Lezeh readers will remember the guest blog by Miriam Freier of Shalheveth that we posted last week (If you missed it, please visit us at firstname.lastname@example.org). There she shared the details of a new Foundation-funded program designed to help many Jerusalem-area individuals with disabilities find and successfully relate to someone special in their lives. The article below (and linked to above) spells out the difficulties but ultimately the pay-off of this kind of love in very human terms.
By JIM DWYER
At age 7, Edwin Morales met Noemi Rivera. Three decades later, sitting in a Szechuan restaurant on the Upper West Side, he slipped a ring on her finger. Both families opposed a marriage, and nature itself seemed lined up against them. They used wheelchairs because of cerebral palsy and needed help taking care of themselves. Still, Mr. Morales said, “We made a promise we weren’t going to leave each other again.”
They eloped and were married in the city clerk’s office on a Tuesday afternoon in 1996. Their honeymoon was a day at Coney Island. His family got over being upset; hers remained estranged.
The other night, Mr. Morales, now 53, sat near his wife’s coffin at a funeral home on St. Nicholas Avenue and discussed the days of a life that people around them had found amazing — the cooing and the squabbling, the midnight changes of adult diapers, the audacious rocking and rolling through the streets of New York.
“We used to race each other,” Mr. Morales said.
“She was real fast,” said Margie Laracuente, one of his sisters.
“Eddie would crash into the wall,” said Jackie Morales, a nephew.
Such emancipation was unthinkable when the couple were children. The youngest of eight, Edwin Morales was put around age 4 into Willowbrook, an infamous dungeon for the disabled on Staten Island. He almost never was moved from his bed. Older children were tied into chairs. By the time Senator Robert F. Kennedy visited in 1965 and publicly deplored the place, the Morales family had liberated Edwin.
“My parents kidnapped —” Ms. Laracuente began, then stopped to steal a quick glance around the funeral parlor. She continued in a whisper: “My mother had a friend with a van. We signed him out for a picnic on the grounds, and when we got there, pulled the van over, threw him in and never looked back. We were so scared the whole way.”
Mr. Morales’s problems fell under the broad description of cerebral palsy, which includes impairment to the nerves and muscles, and in his case, the withering of his right arm and both legs. It was during a long hospital stay for surgery that he met Noemi, who had similar conditions.
“She had straight black hair, like a Chinese doll,” he said. Over the next few years, they rode the same bus to the same school. Then their paths diverged.
“About five years later, she asked someone in the school for my number,” Mr. Morales said, “and she called to see how I was doing.”
They visited, had meals out, took in movies. “Little by little,” he said, “we fell in love.”
His sister Margie found an apartment for him. “My parents took great care of him, but they babied him,” she said. “He wanted to be on his own.”
After they were married, he and Ms. Morales got by on monthly Social Security checks. They had a home aide during the day but were on their own for the night. Noemi’s health problems made her dependent on her husband for the most basic things.
“Any woman would like to have a man like Edwin,” said Edith Henriquez, the family’s social worker. “He always made sure her lips were wet, that her hands were clean, that she got a drink.”
Dr. Gabrielle Goldberg, who took care of Ms. Morales at Mount Sinai Hospital, said: “Edwin is like a 10-year-old who tries to act like what he thinks a man should be. But he was doing it better than any man could.”
They went to the circus every year and had a memorable outing to a salsa concert at Madison Square Garden, and Mr. Morales ventured as far as Flushing, Queens, to cheer on the Mets. They watched videos of “The Little Mermaid” and “Cinderella,” and never missed a televised wrestling match. “Two hours before it came on, it was, ‘Hon, we got to get the snacks,’ ” Mr. Morales said. “She’d curse me out for something, and then, ‘Oh, hon?’ ”
As her health declined, Noemi announced that she wanted to be married in the Roman Catholic Church. By then, they were being seen by Dr. Ana T. Blohm of a visiting doctors program at Mount Sinai, a team that included a nurse, Colleen Buckshaw, and the social worker, Ms. Henriquez. They made actual house calls and solved problems. Ms. Henriquez set up a baptism, communion and confirmation for Edwin and then the wedding. Their home health aide, Mercedes Hernandez, stood as his godparent. A priest came to their apartment, in a housing project on the Upper West Side, and married them in a religious service in May 2008.
In the funeral parlor, Mr. Morales gave instructions. “Write this down: how much I thank and love them,” and he reeled off enough names to map a constellation.
On Thursday afternoon, at a cemetery in Hackensack, N.J., Mr. Morales sat in the warm autumn sunshine, surrounded by generations of the family that spirited him out of Willowbrook half a century ago. He wept.
A white-haired man steered with a cane across the gnarled ground. Mr. Morales looked up at him: Ismael Rivera, the father of Noemi. It had taken him years to get over his daughter’s departure.
“I kept my promise,” Mr. Morales said. “I took care of her.”
“Gracias,” Mr. Rivera said, and hugged him.