Disabled But Able
Giving the Mentally handicapped a Meaningful Life
When Frances opens the red door, a big beautiful smile lights up her face like a neon sign on Broadway, and she yells happily to her five housemates, “It’s Jon!”
There’s a general clamor as Bruce, Allison, Oren and Paul race down the stairs of the two-story adult group home at 52 Glenville Street in Greenwich to say hello to Jon, one of their favorite friends.
Everyone except Debbie, who is taking a nap, crowds around Jon like a bunch of schoolkids who have just been let out for recess. Jon is Jon Doidge, the longtime executive director of ARC, the Greenwich–based organization that has been helping mentally handicapped people for more than half a century.
The meet-and-greet over, the five return to their activities. Allison is entranced by a TV show. Frances, eager to show off her bedroom, takes Doidge upstairs and starts talking about an ARC trip she’s taking to Atlanta and all the great barbecues held at the home in the summer.
In his room, Paul, like a one-man hit parade, starts naming all the Peter, Paul and Mary songs he knows, then segues from “This Land Is Your Land” into a chorus of John Lennon’s “Give Peace a Chance” while Oren, who toured the group home a total of seventeen times before deciding to live there instead of with his parents, looks over his monthly activities calendar.
A silent Bruce, cuddling a three-foot Frankenstein doll, his favorite fictional character, stays at Doidge’s heels. The figure’s fabric arm, ripped at the socket, is dangling and in danger of falling off. “I don’t know if I can fix that,” Doidge gently tells him as he examines the appendage. “I’m not sure I can sew it back on.”
The surprise visit to the home is in a day’s work for Doidge, who has dedicated his life to helping people like Bruce and his roommates live fuller, more independent lives. “I don’t have any children, but I like to say that I’ve had lots of kids,” he says and smiles. “I’ve had a big family.”
For his ARC family, Doidge has done everything from opening group homes and raising funds to picking out furniture for each resident’s room and pitching in to sew kitchen curtains and upholster dining room chairs. “This is not a forty-hour-per-week, five-day-a-week job,” he says during this Sunday tour. “I’m always on call. I spend a lot of time talking to the staff and families. I’m not here to sit in an office, I’m here to promote the ideals of the organization.”
If his voice catches slightly, it’s because he is giving up the helm. This summer he and his wife Mary, a tutor for Princeton Review, are moving from New Canaan back to their native Iowa to be closer to their families.
Caring for loved ones with mental disabilities presents parents with many challenges, and it is ARC’s aim to help everyone — parents, siblings and friends — get through the rough patches. All the things that most people take for granted, such as going for a walk, driving a car, eating dinner, suddenly take on the character of major events that require tremendous prep time.
Philippa Orszulak, whose sixteen-year-old son, Graham Moore, has epilepsy and Angelman syndrome, a genetic condition (also known as the “happy puppet syndrome”) that has left him unable to speak and his cognitive abilities permanently stuck at age two, says that the diagnosis contributed in large part to the end of her first marriage. “I have two younger children from my second marriage, and Graham has some behaviors that are annoying,” she says. “His siblings are compassionate and want him to be part of the family, but it’s difficult to go to the beach or to a movie because we worry that he will get overstimulated and grab a stranger, so we go at times when there aren’t many people.”
Going out at all, she says, is “an intense undertaking” because Graham, although able to walk, needs help dressing and eating. “He can’t button his clothes or open containers,” she says. “And it takes so long to get him ready that there’s no such thing as just jumping up from the breakfast table and getting in the car.”
Graham, who uses a combination of his own sign language and natural gestures to communicate, has an “assistive tech” device that talks for him. For instance, when he wants to say, “I have to go to the bathroom,” he presses a button with a picture of a toilet and the words sound.
After her divorce, Orszulak coped as best she could, adding several part-time jobs to her regular one at a nonprofit. “I was told he was going to be a vegetable,” she says.
“I was renting an upstairs apartment in a two-story house, and I taught Graham to climb up the stairs when he got too big for me to carry him. Most kids with this syndrome end up in wheelchairs, and I was determined he wasn’t going to.”
Thanks to ARC and to her second husband, Peter Orszulak, the family and Graham have made great strides. “ARC has been like an extended family that we will be involved with the rest of our lives,” she says. “Graham is always smiling and happy, and we’ve learned more from him than we can teach, and I know that he will live as independent a life as possible.”
“These are parents who have been thrown a curve ball,” says Doidge. “During my thirty-five years in the field, I’ve been impressed by the reservoirs of strength that the families have been able to draw upon. Many of them have said to me, ‘I’m really better for having this son or daughter. They have taught me things and given me gifts I never would have had otherwise.’
“The intellectually disabled understand that they are different and that they are excluded from things,” he continues. “So it’s important to concentrate on the things that they can do. It’s difficult for them because they are dependent on others for some things, and to receive state benefits, you have to prove that you can’t do something — and that’s demeaning.”
ARC parents say that Doidge will be a hard act to follow. Just ask Greenwich residents Martha and Bill Eustis, whose forty-one-year-old developmentally disabled daughter Kelley lives in an ARC group home and thinks of Doidge as an uncle. “His leaving will leave a huge hole in many people’s lives,” says Martha, sounding as if she might cry. “Jon has been everything to her and us. Kelley keeps saying, ‘I don’t want Jon to leave.’ ”
It is his “huge, kind, gentle” gestures, Martha says, that endear him to all. She recalls that when one of the residents who had no family died, Doidge stepped in and arranged the funeral. “He said, ‘She needs to have a respectable death.’ He picked out the cemetery plot himself, saying, ‘It matters that she be around some people in a sunny area.’ ”
In 1984 when Doidge came aboard Greenwich ARC, formerly called the Association for Retarded Citizens, there were twenty-four employees (now 150) and a budget of less than one million dollars (now more than $13 million) that financed two group homes for nine residents, a preschool for about twenty children and a workshop for thirty-four participants. Today ARC has twelve group homes, thirteen supported apartments and ten home-shares for ninety-five adults. Its Youth Division provides services to more than 750 families each year, and its Birth to Three program helps some 540 children.
One of the young children who has benefited from the agency is five-year-old Zachary Jensen, who has a mild form of autism and attends public school with a full-time “shadow.” “ARC worked a bit of a miracle,” his mother says. “He was in a larval state. He needed speech therapy and physical therapy — there was nothing he didn’t need. Our biggest goal was for him to say Mama and Dada, and now I think he’s going to go to college.”
Helping clients be productive is important, Doidge says. Some of them gain a feeling of accomplishment through volunteer activities, such as preparing packages for troops in Iraq, stocking shelves at Neighbor to Neighbor and raking leaves at Camp Seton. More than one hundred ARC participants have jobs ranging from bagging groceries at the Food Emporium to folding clothes at the Gap store to cleaning gym equipment at the YMCA. “They need to have the satisfaction of doing something that other people value,” he explains. “A lot of our self-worth is measured by what we give back to society and in earning money, regardless of how much.”
Diane Kalambokas, director of finance for Davidoff of Geneva’s executive offices in Stamford, says that the place wouldn’t be the same without ARC’s Greg Beaurline, an office assistant who has been working three-hour shifts, five days a week, for the last decade. Beaurline’s tasks include delivering faxes to staff members, watering the plants and cleaning the kitchen. “He’s a delight,” she says. “He has a great sense of humor and likes to play fun pranks. And he reminds us of normal daily things like changing the clock when daylight saving time starts. We’re just sorry that we don’t have other opportunities available for ARC participants.”
For Peter Saverine and Callie Craumer, co-owners of Colony Florist in Greenwich, having ARC employees means that they no longer have to rely upon a revolving door of high school students as part-time help. John Iovanna, their current ARC employee, comes three days a week for two-hour shifts and does everything from watering the plants and cutting the stems and leaves of flowers to greeting customers and stapling together delivery boxes. “He’s productive, and he’s willing to do anything we ask,” says Saverine. “And unlike some other part-time employees I’ve had who were not intellectually disabled, if he doesn’t have anything to do, he tells me and asks for more work. We are not making up work for him; the functions he performs contribute to the business.”
Hal and Linda Ritch’s son Seth, who is twenty-five, has cerebral palsy and works for an ARC coffee-delivery service in town. “The programs are state-of-the-art, and Jon has been a fantastic advocate for our kids,” Linda says. “I don’t know where Seth and his friends would be without Jon and ARC.”
Doidge, a long, lanky teddy bear of a man with silver-rimmed glasses, a shock of snow-white hair and an accent as broad and flat as a heartland cornfield, dismisses the praise in a bashful, aw-shucks way. “My assistants work much harder than I do,” he says. And he’s much too modest to mention that he is only one of three people to receive the United Way’s Helen M. Alvord Award in human services since its inception in 1984.
“It’s all about buildings friendships and understanding people’s gifts,” Doidge says. “That’s the most important and satisfying aspect of my job — to look at people’s gifts and what they bring. Even the most disabled person has something that makes one’s life richer.” Three years ago, for instance, he and a twenty-something autistic woman involved in ARC played a piano duet at the organization’s annual meeting. For months beforehand, she and Doidge, an intermediate, late-in-life player, practiced “My Favorite Things” from The Sound of Music. “Misa was better than I was, and she carried me through the piece,” he says. “I’d make a mistake and stop and want to start over again, but she’d want to go to the end of the piece. She stretched me to be able to play.”
Doidge, who grew up on a farm in Iowa, became interested in working with the mentally disabled in the late 1960s after he took a summer job as an attendant trainer at a local institution, the Woodward State Hospital School. “It had an impact on me,” he says. “I can still remember two people in particular. One was named Governor and the other was Del Ray. They had Down syndrome. I befriended them, and we would go out and play ball on the weekends when I was working there.”
After earning a master’s degree in rehabilitation counseling, Doidge landed a job as assistant director, then became executive director of an ARC in Iowa before taking the Greenwich post. “I’m most proud of our organization’s philosophy,” he says. “We value quality over quantity. The number we serve is not as important as whether or not we do a good job. We’re not dealing with widgets, we’re dealing with real people, and it’s important for us to make their lives meaningful.”
That’s why every aspect of the group homes — from the wall colors to the art — makes a difference, he says. “Every home is different based on the residents and staff. The physical environment in which they live and work says an awful lot about how they feel about themselves.”
Doidge hasn’t had time to determine what he will do next but says he’d like to get a job in his field. “I don’t do well on three-day weekends because they are too long. By Monday I’m ready to go back to work.” Hobbies? Doidge pauses, looks perplexed and then concerned. Aside from the piano, which he took up at age fifty, he admits he doesn’t really have any. “My job has been all-consuming,” he explains. “I enjoy what I do. I guess that makes me one-dimensional.”
Well, there will be time to sort it all out later. Right now, he’s focusing on the group home and whether he’ll be able to put Frankenstein back together again for Bruce. On the way out, he stops in the foyer, where framed color photographic portraits of Bruce, Allison, Frances, Oren, Paul and Debbie are hung on the wall in plain cherrywood frames. A couple of them are slightly crooked, as though someone brushed against them. Doidge carefully adjusts them. “All of our group homes have the photos up,” he says. “It’s important for them to know the house is theirs and to have self-identification.”
In Des Moines, his own house, the first he has owned in years, awaits. All he has to do is move in and hang his own photographs on the wall.