Former Fernald Residents explain for themselves why they cherish independence

Blue Mass Group is frequently used by an organization called COFAR to question the efforts of those who wish to close state institutions that serve people with developmental disabilities.  Supporters of closure, including the organization I lead, ADDP, believe that people with disabilities are better served by being in community settings and supported by community organizations.

In today’s Boston Globe, Yvonne Abraham lets former Fernald residents speak for themselves.  Their stories help give context to why so many advocates continue to support the closure of state institutions in favor of community programs and support the effort of the Patrick Administration to close four of the remaining six state institutions.

 

Former Fernald Residents Speak for Themselves

YVONNE ABRAHAM
Former Fernald residents celebrate being free

One man changed the lives of four others shut away from the world

By Yvonne Abraham |  GLOBE STAFF     NOVEMBER 24, 2011

Thrilled to be out in the world on a recent night, four old friends sit together in the front row of a crowded downtown function room, wearing their best clothes and wide grins.

Joe Kelsey, Richard Roberts, Curtis Gould, and Albert St. Lawrence are waiting for Vince O’Connell, the man who gave them the break of their lives four decades ago.

It has been 36 years since they last saw him, and they are all old now. But when the tall man with close-cropped gray hair bends down to greet the men, all of them blind, Joe seems ready to leap into his arms.

“Oh, Vinny!’’ he says in his raspy voice. “You went through a lot of red tape getting us out. He got us out of there, Curtis!’’

“Vince O’Connell,’’ Curtis says, taking his cues from his friends, as he often does. “You got us out of there.’’

“You got yourselves out,’’ O’Connell says.

They know this isn’t true. “There’’ was the Fernald School, a place where the men, all mentally disabled, were confined. A long-haired upstart believed their lives could – should – be different, that isolation and exploitation need not be their lot, that their humanity was worth as much as anyone’s.

Vince got them out. The men are here to thank him after all these years.

“So, whatcha been doin’?’’ Richard asks, radiating sweetness, as always.

“I’ve been trying to stay out of trouble,’’ O’Connell tells him. “How about you?’’

“Me, too,’’ Richard says shyly.
Richard and the others know trouble. When they lived there, Waltham’s sprawling Walter E. Fernald State School typified all that was wrong with the way we treated people with disabilities. Institutionalized from the 1940s to the early 1970s, the four men grew up in an era when disabled children were shut away, written off by doctors, separated from families overwhelmed by their needs.

For many, the Fernald was a hellish place. Understaffed and underfunded, it could be squalid and cruel. Though some lucked into compassionate care, many children and adults were abused. Others were forgotten, lost in the thousands crammed together in the wards.

Richard, 77, was sent to the Fernald after his parents divorced in the late 1940s, when he was around 12. Born legally blind, he had never been to school. He was “mildly retarded,’’ his younger brother Philip says. “. . . I wouldn’t say backwards. He just wasn’t aware of things that were going on around him.’’

“My father got me in it,’’ Richard says of the Fernald. “I didn’t like it, but I had to take it.’’

Because there were so few staff members to take care of the patients, more able residents like Richard were forced to care for those with severe disabilities.

“They wanted me to do everything, but I couldn’t do everything,’’ he says. “I told them in a nice way. But what could I do?’’

What else would they do with their days? It’s not like they were getting much schooling or therapy. Each day, they rose before dawn to dress and feed themselves, before they woke the others and did the same for them. They went off to day shifts washing dishes or clothes, then returned to feed and put their charges to bed in huge dormitories, cavernous, cot-filled halls where there was no privacy or peace.

“I had to look after Alan Hughes,’’ Curtis says. “He always slapped his ears. His father was a policeman. Somebody else is taking care of him now. God is taking care of him.’’

Curtis, now 73, had been institutionalized since he was 4. His father had gone to fight in World War II, and his mother couldn’t manage his needs, says his sister Barbara, who still sees him often and whom Curtis adores. She remembers cockroaches crawling out of his suitcase when he came home to visit.

The men chafed against their limited, constrained lives.
“If I didn’t do the right thing, they made me go in a corner and stay in a corner for a long time,’’ Richard says. “I thought to myself, ‘What did I do to have this happen?’ ’’

Joe, younger and totally blind, was spared the duty of caring for fellow patients. He got out often, to visit his foster family, with whom he is still close. But he felt trapped at the Fernald, where he was sent in 1956, when he was 9.

“Sometimes I was spanked a few times,’’ he says. “I was put in isolation, which I didn’t care for. I had my mouth washed out with soap. . . . I kind of cried a little bit, saying, ‘Get me out of here.’ ’’

During the 1960s, the world became aware of the Fernald’s miseries. In 1964, a special legislative commission described conditions there and at other state institutions as “belonging to the Dark Ages.’’

But while critics bayed for more resources to ease the suffering of the Fernald’s residents, few seemed to be questioning whether those residents should be there in the first place.

Until Vince O’Connell. He had worked summers at the Fernald in the late 1960s and returned after grad school in 1971 to work in the unit for the blind, where Joe and the others lived.

“Theirs was a pretty stark existence,’’ O’Connell recalls. “They weren’t shown very much respect. There was very little that was dignified about their lives.’’

He knew they could thrive outside, with help. His supervisor, the late Paul McDade, whom O’Connell describes as “a risk-taker,’’ agreed.

In fall 1971, O’Connell moved six men from the blind unit and two from another unit, to their own apartment on the campus.

This upended the universe at the Fernald. It would be several years before the dam burst, before family members filed a lawsuit over the school’s awful conditions and the state signed a consent decree pledging more funding. The notion that people with developmental disabilities belong in the community was still radical.

Other staff members at the Fernald, who had spent years relying on the free labor provided by Richard and others, were annoyed.

“People I’d worked with during the summers became much less friendly,’’ O’Connell recalls. “I went from fair-haired boy to devil.’’

The men were afraid: After so many years, they had grown used to the grim predictability of their days. There was so much to learn. O’Connell taught them how to find their way about the Fernald grounds, then to the stores, where they got to pick out their own clothes. He taught them to make their own beds and clean their rooms, how to brush their teeth and fold their clothes, how to cut up their food and sign their names and tell fives from tens by folding them differently.

“Every one of these things was a revelation,’’ O’Connell says. “You could see the guys really starting to grow.’’

The men thrived, growing used to the quiet and responsibilities of their new lives. People came from all over the country to see the Fernald experiment.

“It was a little strange at first, but I got used to it,’’ Joe says. “I took it all in. Well, we made it.’’

After 18 months, O’Connell partnered with the Massachusetts Association for the Blind to take over the men’s care, moving them into a group home in an old farmhouse called Sunlight House, in Scituate. The men joined churches, took jobs, and eventually moved into other group homes or their own apartments, where they got as much help as they needed to be fully themselves. They went on vacations and field trips.

“They taught us the ins and outs of Washington,’’ Joe says. “So now we know.’’

O’Connell moved on in early 1974, to administrative jobs at other institutions here and in Connecticut, losing touch with the men. He recently retired.

Four of the eight men he freed from Fernald have died; the association still cares for the others. Joe, the youngest of the group at 64, lives in his own apartment in Brookline and holds down a job bagging spices. At home, “I just relax,’’ he says. “I go to parties. Sometimes I go outside and sit on the benches and enjoy the air. I like to go to the pub and hear a little bit of Irish music or what have ya.’’

Albert, 70, used to live on his own, but now has Parkinson’s disease and can no longer speak easily or care for himself. He lives in a sweet bungalow in Hyde Park with Curtis and Richard and an aide from the Association for the Blind.

It’s a good life. They go to day programs where there is tai chi, singalongs and crafts. At home, they rock in their beloved recliners while the Game Show Network blares on television. They bowl, see movies, take vacations to Atlantic City and Hershey, Pa. They still have family who love them.

Richard lives for the huge vinyl record collection that fills his small bedroom, picking albums at random, feeling for the needle and placing it on Shirelles compilations or recordings of “All in the Family.’’ Curtis, who always sports a Curious George button, has an electric keyboard on which he picks out tunes, once he’s certain everybody is listening.

“Since I came back, I had a good time,’’ Curtis says of leaving the Fernald.
The world has caught up with Vince and the guys. The goal now is to keep people with disabilities in the community, to help them realize their potential and enrich their surroundings.

Spending time with Richard, Joe, Curtis, and Albert, you’re struck by how much of their potential was squandered and how much the rest of us lost because it was.

But you’re struck, too, by the joy of the lives they salvaged. All these years later, they exude the delight of guys who have just won the jackpot. Every little thing they decide for themselves, however mundane, is a victory that was unimaginable not so long ago.

Vince, who on the night they were reunited, received an award from the Association for the Blind for his work with the men, says he was “just a speck in their lives.’’ It’s true they probably would have gotten out without him, eventually. But they would have lost even more years to the Fernald.

That’s a lot of happiness and treasured old tunes to miss out on.

On a recent afternoon, Richard is in his bedroom with Curtis and a visitor. He feels his way over to the turntable, gives the needle a swipe, places it gently on the vinyl: The Lovin’ Spoonful.

Curtis, who had nodded off, wakes with a start and begins clapping.

What a day for a daydream, What a day for a daydreamin’ boy.

And Richard stands there in the late afternoon light, grinning joyously, transported. “This is pretty good, right?’’

Yvonne Abraham is a Globe columnist. She can be reached at abraham@globe.com.