Great article from today's NY Times.   

 

Kendall 

 

An unreasonable man (but my wife says that's redundant!)

 

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.

 

-George Bernard Shaw 1856-1950

 

 

New York Times

April 20, 2006


 


Learning to Savor a Full Life, Love Life Included 


A new movement promotes healthy sexuality for people with mental
retardation and related disabilities


 


By JANE GROSS
<http://topics.nytimes.com/top/reference/timestopics/people/g/jane_gross
/index.html?inline=nyt-per> 

Mary Kate Graham's boyfriend, Gary Ruvolo, is fond of recounting every
detail of their first date 13 years ago and each candlelight anniversary
dinner since. "God help me," Ms. Graham said, rolling her eyes with
affectionate indulgence.

Ms. Graham and Mr. Ruvolo, both 32, accept each other's foibles with
tenderness. The one time their romance was in trouble - a girl "was
spending too much time at Gary's house, and I didn't like it," Ms.
Graham said - they went to couples' counseling and worked it out.

Their next hurdle will be moving from their family homes, both in
Brooklyn, to a group residence. There, for the first time, Ms. Graham,
who is mentally retarded, and Mr. Ruvolo, who has Down syndrome, will be
permitted to spend time together in private.

The pair were coached in dating, romance and physical intimacy by a
social service agency at the cutting edge of a new movement to promote
healthy sexuality for the seven million Americans with mental
retardation
<http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthto
pics/mentalretardation/index.html?inline=nyt-classifier>  and related
disabilities. 

In what experts say is the latest frontier in disability rights, a small
but growing number of psychologists, educators and researchers are
promoting social opportunities and teaching the skills to enjoy them. 

A generation ago, young adults like Ms. Graham and Mr. Ruvolo were
generally confined to institutions, with no expectation of a normal
life. All that changed in 1975, when a court order closed the notorious
Willowbrook State School on Staten Island and moved its residents, and
others like them across the country, into community settings to live as
fully as their limitations allowed.

That could include attending neighborhood schools and holding salaried
jobs. Now many men and women in their 20's and 30's, encouraged from
childhood to be independent, expect the same when it comes to expressing
their romantic and sexual needs. 

The prospect of their children being sexually active often alarms
protective parents mindful of the high rates of molesting among the
mentally retarded. And agencies, whose programs are at least partly paid
for by the government, have been more likely to emphasize the prevention
of abuse, disease and pregnancy
<http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthto
pics/pregnancy/index.html?inline=nyt-classifier>  than to prepare
clients for intimacy. 

"Plenty of people still believe that the answer to this is abstinence,"
said Philip H. Levy, president of the Young Adult Institute, a
50-year-old agency for the developmentally disabled that has been a
trailblazer in offering sexuality workshops and social activities like
the ones Ms. Graham and Mr. Ruvolo attend. 

"But if you hide from this issue, it will come back to haunt you," added
Mr. Levy, whose agency serves more than 20,000 people of all ages in the
metropolitan area. "Plus, once you train people to think for themselves
and give them a sense of promise, to not follow through is really
cruel."

Virtually all agencies endorse the right of a consenting adult to have a
sex life, but formal classes in dating and sexuality, like the institute
offers, are rare. "Informed choice is a major theme in the field, but
actual programs to support a sexual life aren't out there," said Charlie
Lakin, director of research at the Institute on Community Integration at
the University of Minnesota, who says that other agencies are buying the
Young Adult Institute's staff training materials and inviting their
professionals to speak.

Recently, for instance, Perry Samowitz, the agency's director of
education, lectured in North Carolina. From the back of a hall, a
disabled young man asked how old he had to be to have sex. 

"How old are you?" Mr. Samowitz inquired. The answer was 35. "Sounds old
enough to me," Mr. Samowitz said, expecting an argument from the young
man's father, a Baptist minister.

The father surprised him. "I'm here to learn," he said.

Indeed, Maureen Graham's first reaction was fear when her daughter Mary
Kate's social workers asked permission to teach her about dating and
sex. "My eyes got wide when they said this could happen," Mrs. Graham
said. But more quickly than most she saw the logic: "I always wanted
Mary Kate to have as close to a normal life as possible. So how could I
not want this for her, too?"

"This" includes the ring Ms. Graham wears, two hearts intertwined, a
gift from Mr. Ruvolo. The couple talk on the telephone several times a
day; and go bowling, to the movies or to a restaurant most weekends,
usually with their mothers in tow.

"They are so good to each other, so supportive," Mrs. Graham said. "I
don't know if they've already had sex, but they've been pretty intimate
with each other, and that's O.K."

Her blessing aside, Mr. Ruvolo and Ms. Graham say they intend wait until
marriage. "Before that, it'd be no good," Mr. Ruvolo said. 

Marriage rarely comes up in the institute's workshops. Many are led by
Bobra Fyne, a sex educator who welcomed a group of 30 first-timers one
recent evening, ranging in age from 20-something to past 60. 

Ms. Fyne urged them to pose one sex question they had always wanted to
ask. Questions included "How can you get a girl to wear sexy lingerie?"
and "How do you stop somebody from being in such a hurry?"

The second drew a quick reply. "The short answer is, 'You go first,' "
Ms. Fyne said, to waves of laughter.

The six-month curriculum includes birth control and prevention of
sexually transmitted diseases
<http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthto
pics/venerealdiseases/index.html?inline=nyt-classifier>  and abuse. But
it also includes masturbation and what the syllabus calls "pleasuring
your partner," topics avoided by even the few other agencies
experimenting with basic social skills training, often because of
parental objections.

The parents' fears are understandable, given an array of studies that
found 50 percent to 85 percent of women with mental retardation were
sexually assaulted before the age of 18, and 25 percent to 50 percent of
men. Of those assaulted, 49 percent had been abused 10 times or more.
Some experts think safe opportunities for sexual relations can prevent
abuse, although there is no research on the subject. 

Dr. Levy described an incident involving a client at a group home before
the institute's current policies evolved. The 25-year-old resident was
arrested in a public bathroom having group sex with several men he did
not know. When Dr. Levy went to bail him out of jail, the young man was
in tears. "Where am I supposed to go to get my needs met?" he asked.

Far safer, Dr. Levy said, is allowing such needs to be met in the group
home, after a consent evaluation by a psychologist. That evaluation
tests knowledge of birth control and disease prevention, the need to
limit sexual activity to private locations, the difference between legal
and illegal sexual acts and how to avoid exploitive situations.

At the institute, despite freewheeling talk, the goal of staff members
and clients alike seems to be fostering loving and lasting
relationships. "We talk about loneliness," Mr. Samowitz said. "We use
soft, easy words like 'sweetheart.' "

Indeed, Ms. Fyne and others have learned that social isolation is a more
pressing issue than sexuality. At an early class, Ms. Fyne asked
students whether it was "O.K. to have one partner in the afternoon and
another in the evening?" 

The response was a wake-up call. "I don't know how to get a date,
Bobra," one student called out. "So the rest of this is just garbage."

Now the dating lessons often come in a casual aside from a social worker
during a recreational activity. That is how Ms. Graham and Mr. Ruvolo
wound up in couples therapy, with a gentle nudge from Karuna Heisler,
who supervises weekly dances as well as a theater group. 

The theater group is where Nicole Figueroa, 26, and Jeffrey Resnick, 25,
met. An on-again-off-again couple, they are now inseparable, under the
watchful eye of Ms. Heisler. Again, their issue has been jealousy, since
Mr. Resnick is very sociable and Ms. Figueroa has difficulty accepting
his friendships with other women in their circle. 

"We're all trying to teach her that even if Jeffrey talks to someone
else, he still loves her," said Marion Resnick, his mother, who was
tickled to find the pair waltzing in her son's bedroom one day. 

Ms. Figueroa and Mr. Resnick are more physical with each other than Ms.
Graham and Mr. Ruvolo. Ms. Heisler said that was more a matter of
personal style than a predictor of sexual activity. Mrs. Resnick said,
"We don't have the nerve to ask" what they are doing. 

The couple themselves get giggly when asked about their sex lives.

"If she wants to sleep with me when we move to the group home, I'm O.K.
with that," Mr. Resnick said. "And if not, I'm O.K. with that, too,
because what I feel is happy."

***********

 

Margaret A. Nygren, EdD

Technical Assistance Director

Association of University Centers on Disabilities (AUCD)

1010 Wayne Avenue, Suite 920

Silver Spring MD 20910

p: 301-588-8252

f: 301-588-2842

[log in to unmask]

www.aucd.org

 

 


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