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1950’s Drs. Rosemary and Gunnar Dybwad (l) Lt. Gov. Robert Murphy greets Rex Trailer at the State House (r) The 50’s: The Dawn of Hope The Arc began because it was needed. Families were isolated. People with disabilities were We came from nothing; now we stand for something hidden away. When parents were told by their doctor that ur son, Donald, was placed at the Paul A. Dever School when he was only six- their newborn had mental retardation, they O years-old. He cried twenty-four hours a day. We couldn’t sleep. I was afraid my were totally devastated and left without hope. husband, Harry would get killed on the road. We had no place to turn, nobody Parents were given no other choice but to to help us. We could only see him every other Sunday from 10:00 till 12:00 in the place their child in an institution. That was the morning. Imagine being told you could only see your six-year-old twice a month. situation facing thousands of families in Massachusetts. It was terrible. Families began to come together in homes, Some of the local chapters were running churches and other settings to support nursery schools, but there was no each other. The first local chapters of The Arc funding. Everything we did was a battle. (originally the Association for Retarded Greater Boston had begun in the forties Children) began to open. Some of the early but Arcs were happening around the chapters in Massachusetts included the state. The first time we met to form a Greater Boston Chapter (formed in 1945), state association was some place in Franklin County, Hampshire County, and Framingham. Nobody had any money. Founders: l-r, Gert Lynch, John Fettinger, Eileen South Norfolk. Without public funding, Cunningham, Don Guild and Maury Mezoff, It was a struggle from day one. families developed classrooms and camp Executive Director opportunities for their children and began clinical nurseries. The big issue was the Community Clinical Nursery Schools. We wanted the state to take them over. The state refused. Fine. I told them, we’ll take all the kids to the State 1950: The National Arc opens. House. “You wouldn’t,” said Lew Klebanoff, who was head of the Bureau of Massachusetts is one of 14 states represented. Retardation.“Watch me,” I said. Eventually the state took them over. “Provide vs. obtain” was a big issue. We knew we couldn’t run these programs forever. 1953: The Legislature creates a special unpaid commission to investigate training facil- One day a young man died at the Fernald School. His mother, who had died before ities for retarded children. him, had been a friend of mine from GBARC. I felt I should go to the funeral. I called 1954: The National Association for Fernald and couldn’t find out anything, so I called the rabbi who was affiliated with Retarded Children holds its second national the facility to ask where the funeral was taking place. “Funeral,” he said and sort of convention in Boston. laughed. “There’s no funeral. We sold the body to Harvard for $50.00.” There was no money to bury people. When I was president, the big thing was to create a fund for 1955: The Massachusetts Association for indigent people. Retarded Children is formally recognized. Florence Finkel, a founding member of the Massachusetts Association for Retarded Children, 1955 1957: Legislation is passed authorizing the Department of Mental Health to operate fourteen pre-school clinical nurseries. From the report of the Special Commission on Mental Retardation, 1953: 1958: The Greater Boston Arc opens “… although the community was providing for the education and training of the the first sheltered workshop in the retarded, there was still a relatively large group of mentally retarded persons with Commonwealth. emotional and other defects not adequately served. Their community adjustment was difficult and they required at least temporary care in an institutional setting. The 1959: The 50’s end with the Wagon Train, Commission noted that the change of the character of the patient population by having organized by Rex Trailer, host of WBZ-TV’s a substantial increase of the severely and profoundly retarded under the age of five “Boomtown,” who worked with The Arc to years in state schools placed new demands on patterns of staffing. In many institutions, raise awareness. Rex led sixteen vehicles in a the Commission noted ward coverages were at dangerously low levels, and it was not wagon train as it journeyed for a week from Greenfield in the Pioneer Valley to the State uncommon to find one person on night duty in a dormitory containing over 100 House in Boston. boys and girls.” The 60’s: Parents Find Their Voice Through The Arc Government Begins to Take Notice hen Billy was six-years-old we brought him to the Lexington allocated to be distributed to states for planning. Lyndon Johnson WPublic Schools. They said, “Bring him back next year, we have followed with the War on Poverty and federal dollars became available for nothing for him…” That basically said, “See you later.” I enrolled social policy. John T. Berry and the Glavin Center were built. him at Cardinal Cushing but realized how much there was to do to create Prevention and screening were center stage. Phenylketonuia a future for him. (PKU), German Measles, and especially poverty, were seen as the most prevalent causes of mental retardation. Gunnar Dybwad told us about what was happening both in the United States and in other In Massachusetts, the mental retardation effort countries. He introduced me to Peter Goldmark, was under the Department of Mental Health. who was in the Sargent administration. In no State schools were This was the era when they created the area time, I was visiting Nebraska with Jessie Sargent and regional structure that still exists today. and then on to Sweden. We started 500 miles growing in leaps and north of Stockholm and moved south. We looked bounds. Community at day and work programs, home-based Two planning projects ran from 1964-1966, community programs, early intervention. It was programs were few the Comprehensive Planning Project and the fascinating. We started moving around the state and far between but Construction Planning Project. Governor Volpe talking to people about community programs, asked project director Harold Demone to write about what was possible. Don’t forget the state people were listen- enabling legislation to implement the findings: schools were growing in leaps and bounds. ing. It was such a Community programs were few and far between From The Massachusetts Mental Retardation but people were listening. It was such a struggle struggle... grass- Planning Project, 1966: but it was a grass roots movement in the best roots... in the best sense of the word. Parents are very powerful in Recommendations: what they can achieve. sense of the word. • An Office of Retardation Planning responsible to Charlotte Aladjem, President Parents are very the Governor should be established to assume the of the Massachusetts powerful in what responsibility for developing a coordinated Association for Retarded Citizens interdepartmental approach to combat mental they can achieve. retardation. The initial operating budget for this We traveled all over the state working to get local office should be approximately $100,000. chapters up and running. The state school Charlotte Aladjem superintendents had a lot to say. As parents, we • All future residential facilities should house no had no say at all. The state schools were charging more than 500 retarded persons. Plans should be parents. One of the things we did was to get developed to reduce the size of existing those charges dropped. We went to the State House. We identified institutions to this size. thirty bills we would work on, reviewed every bill. Pretty soon they began to pay attention. • A substantial increase in educational services should be provided at the regional centers for the retarded for teaching academic, vocational Don Guild, President, and social skills to all residents. Particular attention should be given to founding member of the the severely retarded and chronically ill who are confined to their Massachusetts Association for Retarded Children wards and require “homebound instruction.” In 1961, President John F. Kennedy appointed a panel of 27 scientists Independent of the legislation, the first recommendation of the Mental and specialists to prepare A National Plan to Combat Mental Retardation Planning Board was to establish a statewide office Retardation. This became part of the Maternal and Child Health and reporting to the governor to coordinate state action to combat Mental Retardation Planning Amendments of 1963. $2.2 million was retardation. It was implemented almost immediately. 1960’s President John F. Kennedy, Eunice Kennedy Shriver and Arc leaders As The Arc proceeded through its first full decade, both hope and options were in short supply for people with disabilities and their families. 1962: 8,000 people live in institutions. For residents, these are truly the dark ages. The State Schools are hardly more than human warehouses. Special Education is years away. Group homes are few and far between. Special Olympics has not yet come into being. Few employers hire people with mental retardation. Private placements are limited in availability, and are very expensive and restrictive. Social acceptance is VFW members Hank DeGrace, John Lopes and Henry unbearably slow. Kosior are congratulated by Gov. Frank Sargent 1963: Massachusetts becomes the first state to establish testing and treatment for PKU, an inherited metabolic disease that can cause mental retardation if untreated. PKU prevention becomes the national disability model for the U.S. Arc Massachusetts leaders John Fettinger, Don Guild and Dr.

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