WALTHAM -- Joan Hanlon is heading out for a breast exam, but she doesn't know it.
She is 49 years old and profoundly retarded. She cannot talk. She can walk only a few halting steps. One of a pair of premature twins, she weighs 69 pounds and her tiny fingers curve like wren's feet.
Her head bobs sleepily as she waits in a wheelchair van in a pelting spring rain outside the Fernald Development Center's Cottage 13, her residence for much of her life. Because Joan has fiercely fought mammograms in the past, she has been sedated for this day's procedure.
Suddenly she begins to moan, her frail body bucking against the belts that hold her in place. A caretaker who has worked with her so long she can decode the throaty noises Joan makes, peers intently at her face. Is it pain? Anxiety? No one else can tell, unless perhaps it is Jean, her twin, who peers anxiously at her sister from the cottage door. But Jean, too, is unable to speak.
"She's OK," Emelyne Philippeaux, who has cared for the twins for a decade, declares reassuringly. "She just wants to go. Joan always wants to go somewhere."
Joan and Jean are part of the dwindling community of disabled people who, admitted to the Waltham facility as toddlers decades ago, now cling to their tiny piece of the vast rolling property. With the long-running debate over the possible closure of the facility nearing its climax, Fernald's remaining 186 residents are virtually all silent spectators, bystanders in the fight that will shape the rest of their lives. Many are deaf or blind. About half wear diapers. Some are missing limbs. With an average age of 57, the last occupants of the nation's oldest public institution for the mentally retarded are, as one federal report put it recently, "the Commonwealth's most vulnerable citizens."
What should be done with them, and for them, is a vexing question, one that has long defied consensus.
Former governor Mitt Romney thought it best for the Fernald to finally close. Starting in 2003, dozens of residents were moved into community homes or state facilities, following the trail of about 2,000 others who once lived in the crumbling brick hospital buildings.
But the exodus was abruptly halted last year by US Judge Joseph Tauro, who asked the US attorney to evaluate the situation. That office's report, released in March, likened the facility to one of "our old shoes that fit just right, or that favorite reclining chair," and recommended that the residents be allowed to live out their days in the setting they know. Given that the youngest resident is 36, that could extend Fernald's life for decades.
Now, the issue, along with Fernald's $42 million budget, rests with Governor Deval Patrick, who must express his opinion to the federal court by this Thursday. Tauro, who has overseen the hospital for decades, is expected to make a final decision shortly afterward.
In doing so, he has many conflicting voices to consider. While many staffers insist that moving the residents could have disastrous consequences, some advocates for the disabled say it is absurd to keep the tired facility open for just a handful. Bob Hanlon, the twins' father, calls Fernald "the number one facility in the country. They'll never get the kind of care they get here anywhere else."
But sometimes when he looks into their small pale faces, all he can think about is what it is like to be them.
"Every time I leave here, I sit down with a highball and cry a little bit," Hanlon said. "Not just for the girls. For all of them."
The girls had been born two months premature to the Hanlons, a Cambridge couple then in their early 20s and already parents to one child. Although told that their babies were normal, the Hanlons noticed early on that something wasn't right. The girls' heads were quite small. They were also clumsy and could never grasp toys like their brother had. The Hanlons wondered whether they'd been hurt when a car bumped into Doris when she was five months pregnant. When the girls turned 2, Doris, worried that their eyes seemed crossed, took them to a specialist at Mass. General Hospital.
"I think we always knew there was something wrong with them. We were just in denial," said Doris Armstrong, 70, who has remarried three times and now lives in Webster. "They said they could operate on their skulls to let their brains grow, but when they did the tests they found that their brains had never developed at all."
The twins suffered from microcephaly, a condition in which the head is abnormally small because the brain has not developed properly. Usually congenital, the syndrome can be accompanied by short stature, delayed motor function, and difficulty with coordination, all of which affect the twins. They also suffer from scoliosis, a curvature of the spine that has made it difficult for them to walk. And yet, the twins are among the higher-functioning residents now at Fernald. They can see and hear and understand a few words, though they still need help with basic tasks, such as getting dressed and brushing their teeth.
Although their medical condition is similar, their personalities are distinct and have been from the day they arrived.
Joan is the social one. Smaller and more developmentally limited than her sister, she likes to be around people and often raises her frail arms to staff for a hug. When any of the seven other residents of the A side of Cottage 13 are unhappy, she bites her hand and frowns. She is particularly fond of tall black men, having grown close to several caretakers of that description. When she is happy, she emits a rumbling whinny akin to a dolphin's song.
Jean is more of a loner. She stands by herself for long periods before a window with a book in her hand. She has an impish grin and says "Hi" and "Bye" interchangeably. Jean, who weighs 95 pounds, can walk farther than her sister, especially with the help of a staffer, who grasps the thick black gait belt that guides and supports her. For the past year, she has worn a knit cap to keep her from pulling out tufts of her short hair. Her father worries that she does it because she is in pain. No one knows for sure.
Jean and Joan are believed to be identical twins, although they have never been tested. They look a lot alike. They have the same brown eyes and fine brown hair, the same small hands that forever worry a line of beads or their bibs. There is a clear echo in the line of their jaws. But there are physical differences, too, that seem to underscore their inner lives. Jean is stocky and self-contained: She looks out at the world, and doesn't always appear to invite it in. Joan is petite and seems more childlike, which draws people to her. Although she cannot talk, her face is a constant mirror of her mood.
"Where Joan will get very excited, Jean lays back a bit," Hanlon said. "Myself, I see them as two girls. Two young girls. But of course they're not."
They have shared a room all their lives -- their current room is pink with floral bedspreads. And they seem to always keep an eye on one another, whether sharing the worn couch in their communal living area or shaking instruments in a music session. When Jean was in the hospital years ago, Joan cried and was downcast until she returned. When Joan was in the hospital, Jean put her favorite doll in her sister's bed and in the chair she used.
Even in Fernald's heated swimming pool -- one of their favorite places -- they watch one another. Jean shuffles through the shallow end, a staffer inches from her side, slapping at the water playfully. Joan, cooing with pleasure, is held like a baby by another staffer. When Jean passes, Joan reaches out to touch her face and cranes her neck to keep her in sight.
"They definitely communicate with each other," said Philippeaux. "When one is gone, the other is unhappy."
At the time the Hanlon girls were admitted, the Fernald was a vast facility, founded in the 19th-century belief that the mentally disabled were best confined at a safe remove from society. The population was almost at its peak of 2,734. The staff numbered close to its high of 930, and the Victorian-era brick buildings that now sag behind a high wire fence were packed.
For the children, this was no green haven. The abuses that were inflicted on many of the them -- medical experimentation, beatings, and neglect -- would not become public for years. Although the twins' parents worried over the years why the girls seemed to have so many bruises and accidents, they never knew whether they were among the cruelly treated. Nor did they ask.
Indeed, the Hanlons, who had a fourth child by the time they left the girls at Fernald, were mostly relieved that they had been accepted.
"It was hard, but I wanted them to go," Armstrong said. "I was worried that other kids would be cruel to my son and other daughter because of the twins, you know, because they had retarded sisters. It was different back then."
Added Hanlon: "We had both dropped out of high school. We didn't know how to take care of them. And we didn't want to."
The twins adapted well, according to Fernald records. But they did not improve much.
Of Jean in 1962, then 4, the records note: "She is quite mischievous. She likes to play with her twin sister and enjoys swinging from various objects. Is generally an untidy child." Of Joan in 1965, then 7, the record says: "Joan is like Jean in every respect, but smaller, thinner, slower. . . . Both twins can feed themselves, very messy. No communication in words. Visited occasionally by parents."
Bob Hanlon did not visit the girls much after their first few years at Fernald for one compelling reason: He is not their biological father. Hanlon was serving in the Army when the twins were conceived. Armstrong acknowledged, "I did have an affair. So I honestly can't tell you who their father is."
Armstrong visited the girls regularly during their first decade there. But in the mid-1980s, she was moving out of state, and she asked Hanlon, whom she'd divorced in the 1960s, if he would assume responsibility for the girls. Hanlon agreed. Over the next two decades, he not only saw them often and became their champion, he served on a family advocacy group called The Fernald League for 12 years. The twins know him well and when they hear his cowboy boots clip across the linoleum floor, their faces light up. Especially Joan's. Armstrong says she has not seen the twins in three years.
Hanlon, a retired transportation manager whose father died in World War II, said he has looked out for them all these years because he wanted them to have a father. A private pilot who towers over the girls' wheelchairs in his flight jacket, Hanlon visits a couple of times a month, always leaving with a wave and a "Ciao."
"At first, I wasn't about to take care of two retarded children who weren't mine," explained Hanlon, 69. "But I matured. And then I got to know them more and more. Someone had to take care of them."
For him, the hardest thing was accepting that the girls were retarded.
"For many years I was embarrassed," he said. "But when I finally admitted it to myself, then I had a better relationship with them and I was able to love them."
Like everyone at Fernald, the twins need 24-hour-a-day help. Joan was not able to walk on her own until she was 10, and neither of them was toilet trained until their early teens. But they have been well-liked by staff members, who appreciate their relatively sunny demeanor.
John Hunter, a case manager who has been at Fernald for 27 years, said he remembers Jean hovering in his office in the Thom building, where they lived in the early 1980s, and sneaking sips of his Coke when his back was turned. The twins, he recalled, would often stand on either side of the building entrance like sentries waiting for people to pass, as if hoping that someone, anyone, would see them.
"They were infinitely curious," Hunter said. "Really, they just wanted someone to notice them."
They could have used the attention. During their first decade at Fernald, the girls, and Jean in particular, had numerous accidents. Between 1964 and 1971, according to the records, Jean fell several times, once breaking a bone in her face. She was bitten by another patient and was pushed against a brick wall by another child and required stitches to her head. When she was 10, she drove her tricycle off an embankment and broke her jaw in three places, the records said.
Joan had somewhat fewer accidents, perhaps because she was less mobile. In the 1970s, she got burnt on the side of her body in a hot shower and fell many times. Hunter told of a time when she reached for a toy in a window and the sill fell, breaking several bones in her hand.
Reviewing the girls' records recently, Hanlon covered his eyes with his hands.
"I should have been there for them then," he said with a sigh. "I should have been there."
Over the next 16 years, Tauro oversaw sweeping improvements at Fernald and in 1993 he returned control to the state. At the time, he specified that residents could be moved only to facilities that provided "equal or better" care than Fernald. Deciding just what "equal or better" means has proved to be difficult.
Fernald is a vastly different institution than it was when the twins were admitted. Today, there are 685 staffers for 186 residents, a ratio of 3.5 workers per resident. The national average is 2.8 staffers per resident. Part of the reason for the high ratio is that only the most severely disabled remain. Also, in the 1960s, the more able residents at Fernald helped care for those in greater need, according to Diane Enochs, assistant commissioner for facilities management for the Department of Mental Retardation.
Sometimes there are as many staffers around as there are residents. On a recent day, four staffers set out to make brownies with three residents, including Jean, none of whom seemed much interested. In an effort to engage Jean, one staffer grasped her hand and turned the spoon for her, while another staffer held the bowl. A third worker clapped her hands exuberantly.
"Good job, Jeanie!" she said. "Good job." Jean looked the other way blankly.
Members of the Fernald League and other advocates say the seasoned staff members, with an average tenure of 19 years, know residents' every sound and gesture and are part of what they treasure at Fernald. But there is more to it than the staff. There is the heated pool, one of few pleasures that many residents have. There are on-site dental and medical services, a church, four buildings that house day programs, and a rolling lawn on which to walk far from the gaze of the curious.
Living outside Fernald, residents would have to travel for many of those services. Although the US attorney's report found that the 49 residents who were moved out of Fernald during between 2003 and 2006 were happy with their placement, some advocates question just how integrated into a community a person who can not walk or talk can really be. Community living is generally considered preferable for the disabled, but is it right for the remaining Fernald residents, given their severe disabilities and long years there? The average length of stay at Fernald is 47 years.
Others argue that keeping Fernald open for so small a group of people is both wasteful and unfair to other disabled people. Caring for a person in Fernald costs twice as much as it would to house and serve them in the community: $259,000 a year inside, $102,853 a year on the outside.
"We are talking about keeping open the oldest facility in the Western Hemisphere," said John Thomas, deputy director of the Arc of Massachusetts, a statewide advocacy group. "That is not a reasonable investment when there are others going completely without services."
Workers themselves are sharply divided over Fernald's closing. Local 402 of the American Federation of State, County and Municipal Employees, which represents about 600 workers, has long fought the institution's closing, arguing that even small changes can have a traumatizing effect on the disabled, much less a move.
But Cliff Cohn, director of operations for Local 509 of the Service Employees International Union, which represents 33 of the Fernald workers, countered that the residents could be cared for just as well in the community and would adapt to a new home.
"Transfer trauma," Cohn declared, "is a myth."
Ed Moran, a day program supervisor who has worked at Fernald for 30 years, sees both sides of the question.
"It can go either way," said Moran, a soft-spoken man who wears his long white hair in a ponytail. "Usually when someone moves, they lose some skills because the staff at the new place don't know what they can do and they do it for them. On the other hand, maybe they'd learn something different at a new place."
Like them, Moran has grown old at Fernald. He remembers the days after the consent decree was signed and the place bustled with activity as conditions and programming were overhauled. Now, he said, the place is quiet. Once he could lift a resident with ease. At age 57, he no longer can.
"They've gotten heavier," Moran said with a shrug. "And I worry about my back."
Records of the girls' life at Fernald are sparse in the early years, but the files bulge after the class action suit brought judicial power to bear. They grew into young women; both got their period in 1973, the records note. They began school in 1974 and were assigned a foster grandmother. They were enrolled in music therapy, art, and personal skills training.
Mobility, especially for Joan, has always been a major concern. At the age of 10, Joan was able to walk short distances on her own. But as she got older, her scoliosis, coupled with extreme spasticity in her legs, made it increasingly difficult for her to get around. Both feet are deformed, and she has intermittently worn a leg brace. In 1973, she had surgery to straighten her left foot. It did not help a lot. Three years later, she was crawling.
"She will creep on her hands and knees and will pull herself up by some piece of furniture," noted a 1976 record. "She walks up and down stairs, two feet per tread. . . . It's a very slow process."
At age 16, Joan was considered to be at the functioning level of a 1-year-old. But staffers noted in the records that "she can learn and has repeatedly proven her capabilities in this area."
In her early teens, Jean was able to walk farther and thus her world was larger.
By 1974, Jean could feed herself and dress herself with modest assistance, according to the records. She wandered the halls of the Thom building, where the twins lived for awhile, often carrying her beloved book or magazine, trailing staffers of whom she was fond.
"She takes part in very limited fashion in the play of other children," said one record. "Her main activity usually consists of pushing another patient about in a wheelchair."
During the mid-1970s, doctors began to consider whether both girls would benefit from a spinal fusion that might halt the scoliosis. But they worried that the procedure would be traumatic. The twins need to be medicated even for basic dental and gynecological work, and doctors repeatedly put the spinal surgery off. Joan would never have it.
By 1996, Jean could walk only 50 feet and was placed in a body brace. Two years later, she had the fusion procedure and was in the hospital for months. The operation was almost as stressful for Joan as it was for Jean.
"Joan, she bites her hand, bites her hand," said Jenny Anthony, 64, a staffer who has helped care for the girls for 15 years. "She is very sad when Jeanie is not here."
By the end of the 1970s, renovation began on the brick dormitories. A series of 13 modular cottages -- more like bunkers on the outside -- was built on the edge of the campus to serve as temporary housing. But family members preferred the smaller home-like interiors and most residents never left.
The daily routine varies little. Every weekday the twins and other residents are loaded onto a bus that drives them a distance of several city blocks to their day program. There they move through a series of activities. There's the Carnival Room, where mechanical monkeys and inflatable elephants shake with motion. There's the Sensory Room, with an array of rotating lights and noise-making machines. There's training in basic life skills, such as tooth and hair brushing. Jean often ignores the activities and rocks gently in front of the window, holding one of her favorite books, "That Terrible Awful Day" in Braille.
After lunch, there's cooking class. Or gardening or therapy.
On a recent afternoon, Joan was angling for a hug from her physical therapist, stretching her arms toward him and tugging on his shirt. "You have to walk first," insisted Jayson Brown, pulling her out of her wheelchair. She walked three steps and was rewarded with three hugs that left her beaming.
At 3 p.m., the bus rumbles back to Cottage 13. The residents sit and watch television or listen to music until dinner. All of them have favored activities. For the twins, the one on the top of the list is the "Bus To Nowhere."
The yellow school bus leaves every Wednesday. It has no destination because there is no need. It is enough for Jean and Joan, as for the others, to feel the bump and lurch of the vehicle and to see the sights that rush past the window. The bus lumbers through the suburbs for more than an hour as the residents, secured in their wheelchairs, gaze out. On a recent trip, four staffers broke into song punctuated by "hallelujahs." The residents clapped their hands and rocked as the bus roared past the silent Weston estates.
At the end of the week, there is church. Residents are pushed in wheelchairs along the bumpy sidewalks by family members and local volunteers to the Chapel of The Holy Innocent, a small Catholic chapel at the heart of the campus.
Church is a popular activity and some residents clap and shout on their way. The Rev. James W. Chichetto, the presiding priest on a recent Sunday, described the service as, "chaos. It's mayhem." He is right.
As the service begins, several dozen residents are parked in wheelchairs before the altar, including Jean and Joan, next to each other. Another 50 people, including community members, crowd the pews. A few residents wear helmets for their protection.
Some sit. Some stand. Some sit and stand. As the priest begins to speak, several residents wave at him and chime in. A man screams fitfully. A woman bleats as if in pain. A few croon. A man in a black cowboy hat spins around. Joan twists her hands while Jean nods vigorously, saying "Hi."
The noise swells, but Chichetto perseveres, talking about the importance of people helping one another. He passes among the wheelchairs murmuring "peace." And when the congregation breaks into "Amazing Grace," the residents erupt. There is kicking and crying and singing.
Jean and Joan clap wildly to the music, glancing not quite at one another, rocking in their wheelchairs. And when the hymn is over, they keep on clapping.
Sally Jacobs can be reached at firstname.lastname@example.org