"Weirdo. Retard. Stupid. Slowpoke."
With gentle prodding, the third graders at Liberty Elementary School had no problem coming up with the words used to describe people with mental retardation.
A few minutes later, the kids got a taste of what it's like.
Split up into small groups, they were told to put socks over their hands, take some old shirts, untie their shoes and try to dress themselves. Then they were to write on the blackboard "your uncle's first name, your aunt's last name, your cousin's first name and your pet's name." No questions allowed. "Hey, whose name? My aunt's what name?" Sorry, no questions. Then it was off to another room, where the kids were given two minutes to duplicate a fairly detailed drawing on graph paper. "You mean we gotta count every little square?!" Everyone also had to take turns trying to fashion origami cups based on a rapid list of instructions given just once. Finally, the children had to trace pictures by using a mirrored reflection as a guide.
All the exercises were supervised by smiling, friendly--but unhelpful--parent volunteers. The tasks were bewildering.
Less threatening to everybody was a short film from Boston public television about a mentally retarded girl named Paige--narrated by Paige's sister Jane. The kids also read and discussed a poem about people's similiarities and differences.
Liberty, a school in northeast Phoenix, was the setting this spring for a semester-long series of elaborate training sessions for third and sixth graders called "Understanding Handicaps," orchestrated by volunteers under the guidance of district parent Amy Hyman.
The kids at Liberty had already completed training sessions on blind, deaf and physically handicapped people and had heard guest speakers. So they were somewhat prepared when, a week after their first session on mental retardation, Brenda Bargmann came to the school to talk to them.
"Hello!" Brenda told the crowd of third graders. "Just after I was born 27 years ago, it was discovered I had Down syndrome. The doctors pleaded with my parents to leave me at the hospital to be placed in an institution. My mom would not hear of it or accept such advice."
Brenda has an extra chromosome in each of her cells--a distinction that marks the estimated 250,000 Americans who have Down syndrome, the leading clinical cause of mental retardation. One child in every 1,000 live births has Down syndrome, which usually causes delay in physical, intellectual and language development; the degree of retardation varies widely.
Among other things, Brenda talked about her deep faith in Jesus Christ and herself. And her extremely busy life.
In addition to being a speechmaker, Brenda Bargmann's also something of a "groundbreaker."
She's helping smooth the path through regular school classes for children such as five-year-old Ashley Halawith, who has Down syndrome and will start classes at Liberty in the fall, and ten-year-old Tammy Cooper, who has a variety of physical and mental handicaps from brain damage and just finished her first year of regular classes at the school.
Ashley's mom, Vivian, admits some fear about "mainstreaming" Ashley, and that's one reason she was an observer at Amy Hyman's sessions. "I was really pleased," Halawith says. "I really like the little exercises they had the kids doing." Those frustrating tasks? Depends on how you look at it. In Halawith's view, the kids were interacting well by helping one another get through it.
She gave a rave review to Brenda for doing "an excellent job in front of a bunch of third graders--what a scary little group."
Brenda told the kids about moving from town to town and going to a variety of schools. In the early Eighties, she was the first person with Down syndrome to graduate from Scottsdale Chaparral High School. It was tough. "Some kids were very cruel," she told the third graders. "They called me an `ugly duckling' and made fun of me. But I learned to ignore their words and to pray for them."
Ashley Halawith has attended a regular preschool for a couple of years, and "she's done fine," says her mom. Until that could happen, however, Vivian herself had to change. "When she was first born," Vivian says, "I kind of looked for prejudice, and if I found it, I think it was because people were reacting to me and not to her. I kind of expected people to look at my baby and go, `Oooh, what's wrong with her?' And so I just walked around with an attitude on my shoulders, and once I got rid of that, I just don't see it. I mean, if people stare, I don't see it.
"Maybe, it was getting over what you have to go through when you first have a child with disabilities--the hurt, the pain, the grief. `Why did this happen to me? I did everything right. I don't deserve this.' Basically, it's just accepting your child. When I was okay with it, then the attitude went away. It didn't happen overnight. One day, you wake up and go, `Gee, I don't feel so bad.'"
Like many other parents in her circumstances, Vivian Halawith wants her child to go to regular classes not only for the academics but for social skills. "Sometimes retarded people can't get along with other people," she says. "Well, why? They've had special services. They haven't had to get along with other people. . . . I want to think about what's going to happen to Ashley once she gets out of school. Is she going to have a job or is she going to stay home all the time? I want her to be prepared to have as full a life as she can."
At this point, Ashley, who has gone to preschool with non-handicapped kids, "is real speech-delayed," says her mom, but she's also "real independent, real outgoing and a real happy kid."
"She's more like five-year-olds than different from other five-year-olds," says Halawith. "She drives you up a wall just like any other kid."
One part of the Understanding Handicaps session jolted Halawith. "The dressing with the socks on their hands? I looked at that and thought, `So that's how Ashley gets up and dresses every morning.' And she gets frustrated when she can't do things. She's my only child, so I don't always know what to expect from her--what she can do and can't do--and I get frustrated because she's not doing something I think she should be doing. And watching those kids struggle with that stuff, now I can understand it better."
So can the kids at Liberty. Just ask Karen Cooper, who decided last year that her daughter, who cannot speak and requires constant supervision, needed to be around regular kids as well as her special-education classmates.
She knew her daughter's rights to be mainstreamed for at least part of her school day and held constant conferences with Liberty officials to make sure it was going to happen.
So, in October, Tammy started attending third-grade classes a few mornings a week, with the help of a full-time attendant (at first her mom) and equipment like a wheelchair and a walker.
"The kids would walk six feet around, they'd stare, they just didn't have anything to do with her," says Karen Cooper. "Her classmates were amazed, and they weren't even sure to ask me questions. When I would leave the room, then they'd ask the teacher a zillion and one questions. So we had a meeting, I answered questions. The more they saw me and the more they got to know, the kids in her own class took to her like you wouldn't believe."
Now that's spreading through the school.
"The other kids were scared to death of her," Cooper says. "And then when Amy started this program, it's helped. I'm telling you, one boy, I was coming up the parking lot, he stood there for five minutes and waited to open the door for me--where before the kids would either run in or stand there.
"Every morning, they all come up to her, all ages, and say hi to her, to show her things, they want to push her chair."
Some of those kids no longer shy away from Tammy when they see her in the neighborhood with her mom.
And some of them visit Tammy at home. When you enter the Cooper residence, you take off your shoes. It's not a religious thing. It's to protect Tammy, who spends a lot of time on the floor.
Injured at birth (a court case was settled by the establishment of a trust fund), Tammy has multiple handicaps and continuing medical problems.
She had hemorrhaging of the brain and was asphyxiated for six minutes. "The back left quarter of her brain is pretty much gone with brain damage," says Karen Cooper. Tammy has a ventrical shunt to drain off brain fluid under her skin to her abdomen. "She's listed as CP, cerebral palsy from brain damage. It's not like a chromosome disease. It's brain damage. She wasn't born with this disease or anything."
The words tumble rapidly and sometimes defiantly out of Karen Cooper. She's accustomed to battling bureaucrats, doctors, administrators, teachers, anybody who she thinks gets in Tammy's way.
Somebody needs to speak for Tammy. She cannot form words, but she understands, although exactly how much isn't known yet. Her right hand usually twitters near her mouth, while her left hand sticks out and flutters, or throws things--anything within reach. She touches and is touched a lot. Since emerging from the hospital with frazzled nerves--literally hypersensitive to touch just about everywhere on her body--Tammy has already experienced a lifetime of squeezing and rubbing and hugging in an attempt to desensitize her.
A short-circuited brain keeps this child a mystery. But it is immediately clear from her eyes that she is far from being vegetative. And amid all her physical problems, Tammy moves gracefully.
She constantly is being educated. And everyone around her is part of the training. "Hands down, Tammy," Karen or one of Tammy's playmates will say. Tammy will respond by putting her hands down. Her fellow pupils will do the same thing at Liberty. In her own way, Tammy can communicate by expression and sounds so that other kids are able to play with her. And she loves to play.
"She's doing more and more--and more than they ever said," says Karen Cooper. "They told us that she was blind, deaf and a vegetable, give up. She spent two months in the hospital. . . . It was a battle the first three years. I listened to the doctors . . . I let them push me around. And finally I started pushing back.
"Now I tell them what to do and what's going to happen, and they let me run the show. You learn. Once you get used to your child's problems and her needs and things like that, you start saying, `No, we're not going to give her that medicine,' or `No, we're not going to experiment with this.' And then you find out you were right, you should go with your gut feelings.
"Tammy had a cyst on the brain and they said it would grow and grow and kill her. Well, when she was four years old, it disappeared. Her sight gets better. Her hearing came at six months. Very good hearing, this child."
She's an agile crawler, and she can walk with a walker. Her myriad of drugs, though, both cure and cause complications. At ten, she's plunging into puberty. Antiseizure medicine always has to be tinkered with.
Cooper, who found time to volunteer in Amy Hyman's program, was dazzled and inspired by a speech to the Liberty kids by Boyd Smith, a school district employee who uses artificial limbs.
"He was great. That was the best thing I've heard in a long time," Cooper says. "You'll find some self-pitying people that are pretty damn bitter and you feel sorry for them not because they're handicapped but because they're handicapped emotionally--because they let it be that way.
"And some parents are that way, too. I've met some parents who just can't handle it. I could have been that way. I could have gone and just felt sorry for myself, been mad at the world and mad at everybody. And it's, like, why? Why not turn it into a positive situation? You have to live with it. I mean, I don't want to have to brush her teeth twice a day. I don't want to have to do anything. But if I don't, it's not going to get done, and she suffers, not me. Just because I wouldn't take five minutes to brush her teeth? You learn to live it. You do it, you get done, it's over with, no big deal."
As a child, Karen Cooper was more or less accidentally exposed to handicapped kids. She attended an elementary school in Scottsdale that also housed special-education classes.
"Maybe that's why I accepted it so well when I had a handicapped," she says.
She and her husband, Tom, are natives of the Valley and they have a huge number of relatives around for support. After living in what she calls "the fast lane" until Tammy was born, the Coopers have had to learn patience. Although, "patience" isn't the word that comes to mind when you talk with Karen Cooper.
As a person who spends much of her life taking her child to doctors and therapists, she practically has a second home at Children's Rehabilitative Services, the smorgasbord of medical personnel operated jointly by St. Joseph's and Good Samaritan hospitals to treat chronically ill children.
Right now, she says, she's considering writing a letter to Governor Fife Symington about the state budget. "If their budget is cut, CRS is going to have to drop 50 percent of their children," Cooper says. "They are only going to keep the chronically ill and the very serious ones. The rest of those people are going to be dropped. And most of the people who go there are poor, very, very poor. If they don't get that, that means their children aren't going to get therapy, which means their children aren't going to have a prayer in the world to ever grow, walk or do a damn thing."
Amy Hyman says "there are a hundred Karen Coopers out there." In Hyman's own case, it's different.
"I don't have a child with special needs, so I can't crusade in that area," says Hyman, an occupational therapist by training. "I crusade on the education level because I just believe in a real rounded education and to me, I've got a child who's not a special-needs kid but who's a different type of child. If you can accept someone who's in a wheelchair or physically different, you can accept my child--he's a male and has no sports inclination, dresses in pink and purple, spikes his hair and has a twelve-inch ponytail--at ten."
It was last year that Hyman convinced the Paradise Valley School District's administrators and teachers to let her bring in the nationally recognized program from Newton, Massachusetts; this is the first time it's been used in Arizona. It's been up to Hyman to scrounge equipment and other volunteers for the program, which she has adapted and renamed "Everyone Counts."
There was wariness initially, but after all it wasn't costing the school district anything. Now, Principal Margo Seck is full of praise and people are excited about it.
Brenda Bargmann is simply thrilled about what's happened. Though active in youth work and other groups at St. Maria Goretti Catholic Church, she had never spoken to a grade-school class. Some of the letters she got from the kids after her speech made her mom cry, especially the one that said, "You really made me feel good about myself. I am so happy that God has helped you so much."
Then there was the one that closed: "Even though you have Down syndrome, you act as if it's a gift, not a disability."
Actually, Brenda just acts like anybody else. Living at home with her parents, Evelyn and Evans Bargmann, in northeast Phoenix, she runs her own life and keeps it full.
She works in the housekeeping department at the Days Inn on Scottsdale Road. She prays for cancer patients and goes on church retreats.
She plays the piano--though out of practice, she still does a good job on "Moon River" and "Try to Remember." Brenda swims, runs, dances and a while back took up ice skating. She has a gaggle of medals from Special Olympics.
And every day, Brenda starts with an aerobics workout to videos. She sings into her karaoke boombox or dances to tunes like the Village People's "Cruisin'."
Brenda is no hothouse flower, protected from the world. Her parents sometimes struggle to keep up with her.
"How does she know so many people? Every time we go somewhere, there are people she knows who I've never even seen or heard of," says her dad, Evans Bargmann.
"Yeah," says Brenda, "I'm an outgoing person. Basically, I just be me."
And when the situation calls for something, she just does it. Like the day five years ago when she saved the family dog Rusty, who had fallen into the backyard pool.
"He was in the swimming pool on his back. He was drowning," Brenda recalls. "First thing I did, I jumped into the pool. I got my dog out. I called my neighbor and I said, `Connie, my dog was drowning. I need to go to the veterinarian.' And that's what happened. I saved my dog's life."
Nothing that Brenda does surprises her parents anymore. But her mom does marvel at some things, like the special relationship Brenda had with Evelyn's father, Nazzareno Poggi.
Down syndrome carries with it a "look" that may include almond-shaped eyes, short stature, stubby fingers and large tongues. That may cause the rest of the world to mistakenly think that people with Down syndrome don't inherit traits from their own families.
In Brenda's case, her spirit seems directly linked to her adventurous grandfather.
Nazzareno Poggi was a shepherd at four, a farmer at eight, an illegal immigrant from Italy to America at twelve. He conned immigration officials into believing that he had a bank job waiting in Philadelphia, and he wound up pulling dandelions out of rich men's lawns. Soon, he learned construction, road-building and firefighting, and worked in steel mills and on farms.
Powerful at 5-9, 190 pounds, he caught the wrestling bug after challenging a circus strongman in Easton, Pennsylvania. When the U.S. entered World War I, he enlisted and became a motorcycle dispatch rider in France. After the Armistice, he entered a wrestling tournament in Paris and won the American Expeditionary Forces championship.
After his discharge, he hooked up with his captain for a cross-country car trip and spent two years in California, where he was a bit player in the 1923 version of Scaramouche and a few other movies. His first love was wrestling, so he became a barnstormer.
Wearing sandals and billed either as Nazzareno Poggi or his Americanized name, Joe Polk, he was portrayed in hundreds of newspaper stories as "the handsome Italian heavyweight grappler of Chicago" or "the terror of Texas" or "coming out of the West like Young Lochinvar." In Memphis, he was heralded as "the Italian bone-crusher." He wrestled Ed "Strangler" Lewis and the Finnish, Swedish, German, and British pro champs.
He was "built like a truck but has the agility of a Ford," said one writer. Wrestling took its toll. A handsome guy, Joe Polk developed huge cauliflower ears early in his career. Writers contended those ears kept him from Hollywood stardom. A serious injury finally forced him out of the ring. So he took up welding and settled his family onto a farm near Quakertown, Pennsylvania. When he was in his sixties, he learned to fly, and he tooled around in a Cessna until he was 82. About a year later, in 1977, he died.
Evelyn Bargmann keeps a huge bundle of newspaper clippings about her father. When Evelyn talks about him, it's clear that Brenda had a strong impact on tough Joe Polk. What would have happened if the two had never met?
One of Evelyn's most striking memories is of a conversation she had in the hospital with her doctor shortly after Brenda was born. Evelyn was 39; they'd had no "problems" with their other children.
"Evans and the doctor broke the news," recalls Evelyn. "I thought it was me. The doctor hemmed and hawed. Then he said, `It's the baby.' Finally, he said, `She's retarded.' Then he hemmed and hawed some more and said, `She's a Mongoloid.' Then I said to the doctor, `Look, all I care about is will she live?' At that point, I didn't care how she lived, I just wanted her to live. We never know how we're going to react to a situation until the time comes. That's all I cared about, is that she would live and I could just love her and take care of her. Then the doctor said, `I think it would be a good idea if you left her in the hospital to be placed into an institution.' I said, `No, I don't want to hear anything about that,' and he got angry. He said, `Our institutions aren't that bad.' I said, `No, God gave her to me this way. This is the way I'm going to take her home and take care of her.'"
It can be different for parents now. When Vivian Halawith gave birth five years ago to Ashley, the support network Pilot Parents sent a couple who had experience with Down syndrome to talk with her in the hospital.
Evelyn Bargmann thinks that's a great idea. She wonders about what could have happened if she had been so scared that she put Brenda in an institution.
"Wouldn't it have been a sad thing if I had done that?" she says. "I'm sure Brenda would not have developed as she has. Many, many people are blessed with Brenda. My father was a professional wrestler, he was a very powerful man, mentally and physically, and we were all afraid of him. But little Brenda, she would climb up on his lap while none of us would ever get near him--and that's the truth--she'd climb up on his lap, put her little hand on his face and say, `Oh, Grandpa, you are so handsome and you are so sweet and you are so nice.' She would just melt his heart. Nobody else could do that. No one. But she would do it. She really touched him."
Brenda remembers old Joe Polk well. "I wasn't afraid of him, because I loved my grandfather," she says. "He was a fantastic guy. He kept saying to me, `Brenda, you can make it. If I can do it, you can.'"
Brenda adds, "I take after my grandfather sometimes."
run this on page with Tammy Cooper photo
A short-circuited brain keeps Tammy Cooper a mystery.
run this on the half page if necessary
"Brenda would just melt his heart. Nobody else could do that. No one.
