We’ve Come A Long Way...50 Years of Progress at HARC

by Chris John Amorosino

In 1951 when HARC was founded, mental retardation was a source of shame. People didn’t talk about such things. People with mental retardation were thought to have a genetic predisposition to criminal behavior.

There was shame around disability and disease but also an unwholesome, seedy feeling about the people and what they were likely to do," says HARC CEO Stephen Becker. People with mental retardation were sometimes locked up in the back rooms of houses, and neighbors would not know they were there.

No one knew much about mental retardation. Research was scant. Superstition ruled the day. Doctors who diagnosed the condition at birth would often tell parents not to bond with the child. They’d discourage parents from giving a child vaccinations and other preventative medical care.

Parents heard the constant refrain that such a child should be put away and forgotten. When professionals gave such advice, they were not being malicious – they were trying to save parents from what they saw as a lifetime of hard work, pain, and grief.

Another prevalent feeling in the 1950s was that people with mental retardation needed to be protected and society needed to be protected from them. Society believed that they were "better off with their own kind." Institutions for people with this disability looked like prisons. As many as 50 people would sleep in one large room in cribs with nets over them.

It’s no wonder people with retardation didn’t thrive. Our society was ashamed of them, afraid of them, and thought very little (if at all) about their ability to learn. This mindset created a self-fulfilling prophecy. Expect very little from someone, and guess what you get?

Amid this cultural climate, parents started what grew into a dramatic change in the way our society understands and cares for children with mental retardation. In many areas of the country, including Hartford, parents formed self-help groups to promote understanding about the disability. They supported each other, fought for research funds, and began providing programs for their children.

HARC was born when a state social worker, Harriet Dearden, called together a small group of parents and friends in Hartford in 1951. Margaret Tedone, one of those original founders, says that before that first meeting the parents were mostly hoping to start a babysitting service for each other. "We got to the meeting that night and we talked about education, training, informing parents, and many other things.

We were so enthusiastic that babysitting was never mentioned again. We had bigger fish to fry."

Programs were a big priority. Fifty years ago children with mental retardation could be legally excluded from public schools. They were either placed in an institution or cared for at home. There was no help if parents decided to keep a child at home. Schooling was only available if the school wanted it to be available. The law didn’t mandate education for all children until 1978.

Edith Kelly of Avon joined HARC’s board in 1970 and served as president in 1989-90. She praises the courage of those HARC originators. "It was a small group that knew something had to be done so they started within themselves. They didn’t go to somebody and say, ‘Set this up,’ They didn’t go to people and say, ‘What are you going to do for us?’ They did it  themselves," she says. Edith also has high regard for the many volunteers, friends,  physicians, and others who supported HARC in those early days.

Margaret Tedone served as HARC’s first secretary.

She says HARC spent a lot of time reaching out to the community to gain support. Civic leader, local historian, and author, Ellsworth Grant became an early supporter. The President of Hartford’s Gengras Motors, E. Clayton Gengras gave HARC a station wagon to transport students to its first day care program.

Breaking new ground meant taking lots of risks. "It was absolutely unbelievable some of the things we did," Margaret says. For example, Margaret and others saw a private home on Asylum Avenue and Fern Street that they felt would be ideal for HARC’s day care program. They approached the family and asked if they would consider donating it. Although the home wasn’t donated, the owner soon became a strong, active supporter of HARC’s work. HARC volunteers also sought appointments with every prominent citizen they thought might help the cause. "We were free souls," Margaret explains. "We would go where angels would fear to tread."

Parents and other volunteers often raised just enough funding for a pilot program and then used the pilot to prove the capabilities of people with mental retardation. Once HARC demonstrated that these disabled people could learn and work, the group sought legislation to mandate programs. HARC learned early that for programs to become reality they must be mandated by law.

The parents and other early organizers formed a bond. A parent of two children, Dick Brown of Enfield says, "HARC filled a need for not only people with mental retardation, but for their parents." Here and in other states parents formed state offices and a national office to fight for the human rights of our people. Parents used both the political and judicial systems to meet their objectives. In one landmark judicial case, The Pennsylvania Association for Retarded Citizens sued the commonwealth of Pennsylvania. After years, the case resulted in the 1978 passage of the Education for All Handicapped Children Act, now called The Individuals with Disabilities Act.

Through another series of lawsuits, HARC and other advocates fought for the right to treatment. These suits contended that although many institutions called themselves training schools or developmental centers, they did little or nothing to train and develop people. In 1951 HARC founders spearheaded the founding of the Connecticut Association for Retarded Citizens along with five other parent groups in Connecticut. Later, through a long legal battle, the CARC would force the closing of Mansfield Training School. A third series of lawsuits, called the right to community living lawsuits, helped people who never should have been placed in institutions get out of them.

"We lobbied for everything," Margaret says. "Every single program you see today has its origination in the lobbying we did at the state capitol. It was time for these youngsters to be taken out of the back room and it was time people recognized their potential and how much they could add to society instead of being a drain on society."

While the lawsuits were going on, parent-run programs continued proving that children with mental retardation benefited from education and training. The children could enjoy life and activities. Their obvious progress and performance completely smashed the old stereotypes. They showed the world how trainable, loving, and caring they are. Every step of the way parents led the charge. They accomplished more than the professionals could. Unlike professionals, parents weren’t bound by any protocol or hierarchy. No one had more passion about and investment in the lives of people with mental retardation. And, parents knew they were doing the right thing.

By the late 1950s Connecticut had one room school houses for excluded children, family support pro-grams, and recreational programs. In the 1960s, as the children began to grow up, the question became what are these children going to do as adults. "What’s the good of education if they’re going to just sit home after that?" Dr. Becker says.

The desire to put the children’s training and education to a lifetime of use spurred HARC to create cottage industries or sheltered workshops. Companies would provide simple jobs to the workshops (collating, assembling, packaging, etc.) This was an important part of the movement because it recognized that people with retardation needed an adult life and their parents needed respite. As more and more households became dual income, the need to find useful work and activities for adults with retardation increased.

Then HARC and other service providers became even more creative. By the late 1970s parents and care givers realized sheltered workshops were just a one way door, because the workshops kept people out of the greater community. HARC began convincing companies to hire people with mental retardation and employ them at their sites in the real world.

Today 26 companies provide employment for HARC clients. People from the sheltered workshops of the 60s and 70s now work in law firms, accounting firms, investment companies, hotels, and other businesses.

"Companies tell us they can’t do without us now," says Dr. Becker. "The administrative assistant role today is very sophisticated and filled with technology. It would be wasteful at their wage scale to have them doing the things that our clients do so well. Our clients are terrific at tasks like setting up a conference room for lunch and cleaning up afterwards. They’re great at opening mail, shredding paper, recycling supplies, delivering faxes, and other routine but important daily tasks of business. We fit a good niche."

People with mental retardation have also come a long way in housing. In the early 1980s HARC helped pass a law that allowed group homes to open without going through the town planning and zoning process. Many towns had zoning laws designed to prevent large groups of college kids from renting a house and drastically altering the character of a neighborhood. These old zoning laws said not more than three unrelated people could live together and they blocked group homes for people with disabilities like mental retardation. The current law allows for as many as six unrelated people to live together, plus staff.

One of the many beneficiaries of this housing breakthrough is Dick Brown’s son, who is 48 years old. Besides having moderate mental retardation, he has a speech defect, a walking defect, cerebral palsy, and retinitis pigmentosa. Dick's son lives in a group home with five other residents in Newington. He works in a CIGNA cafeteria, a job HARC found for him. Dick says, "For all the problems my son has, he tries to be as independent as possible and he’s doing quite well. He has a very positive outlook."

Today HARC provides a variety of residential programs including apartments, condominiums, two family houses, and a group home for children with multiple disabilities. Communities throughout the entire Greater Hartford region now house HARC-run residential programs.

"These programs are very important to the growth and development of our people," says Dr. Becker. "They answer the nagging question that parents have, ‘What will happen to my child after I die?’ They’re a marvelous thing because parents can get on with their lives and the children can get on with their lives. We’re seeing a wonderful adjustment on both sides."

Schooling has also dramatically improved. In the 1950s children with mental retardation would most likely not attend school or attend a school of their own. The very few who went to school with other children were kept segregated in their own classroom for the entire day.

Today, public schools frequently mix disabled and non-disabled children together for non-academic activities like art, lunch, physical education, auditorium presentations, and music. Children with mental retardation take academic subjects in a room where they can receive more individualized instruction. Or, sometimes a resource aide stays with the child and the child spends the whole day in the school’s mainstream.

Most HARC parents watch their children closely and, based upon their own child’s needs, determine the best mix of inclusion and special instruction. Parents tend to avoid any prescribed model of instruction, preferring to adapt the schooling to their child’s particular needs.

Today the law mandates that each child have an individualized education plan. The parent is part of the team that creates this plan each year for the following year. Because research shows that special needs children benefit from early and extended instruction, the law also requires the state to provide education for any children with disabilities from age 3 through age 21 (or graduation from high school, whichever comes first).

In addition, the federal government now matches state funds for any special needs educational program for children ages 0-3. "HARC has 200 babies in this program," Dr. Becker says. "Many of these babies will not need any more services after age 3 because we caught their condition in time." The programs are not exclusively for children with mental retardation but for any type of developmental lag. By diagnosing the lag early and providing special instruction, many of these children catch up to other children their age.

Much of the change from 1951 to 2001 involved moving people out into the real world.

Increased knowledge and understanding has helped society get beyond thinking of a 36-year-old man with mental retardation as someone who should be treated like a child. In every way except IQ scores, that 36-year-old is an adult. He should be talked to and treated like an adult. He can probably work, live somewhat independently, and be a productive member of the community.

Dick Brown believes the most significant change in HARC’s first 50 years has been through integration. Once people with mental retardation started going out to restaurants, theaters, parks, stores, and other public places, attitudes began to change. We’re now on the road to greater acceptance.

When Dick and his wife, Martha, take their son out to a restaurant they’re no longer stared at. People treat them like they treat other customers. Dick says, "We find that servers and others now have a greater level of patience with disabled people."

Today HARC helps people with this disability join other people in all aspects of life, including recreation. For example, rather than hold a special summer camp, HARC children and counselors play with other children in the city’s parks and at Camp Courant.

"We have learned to not over-react to mental retardation," says Dr. Becker. "By over-reacting we limit. Mental retardation is just as much a matter of civil rights and opportunity to be participatory as it is a matter of clinical concern. If we take their rights away in the name of protecting them, then they really have no life."

Throughout these 50 years HARC has sought to make the lives of people better while challenging them to function at the highest level they can. Since no one knows what anyone’s highest potential is, HARC always keeps striving for more development.

With five decades of HARC memories, Margaret Tedone recalls a long list of the group’s achievements. But, she can tell you what makes her most proud.

"I’m most proud of the fact that HARC came together as an organization, primarily of parents and friends in the beginning, and we were of one mind. We believed our children could be trained and educated and they could be productive members of the community.

This was our original mission and I’m proud that we carried out that mission. Any way we had to, we carried out that mission."

Dr. Becker cites a history of breaking new ground. "We constantly chipped away at barriers. As we moved out into the community, people began changing their ideas about us, which is why we use the tagline, ‘HARC – changing the lives of people who have mental retardation and the minds of those who don’t.’ The mental retardation movement, particularly here in Hartford, has been extremely effective, so much so that when we moved into this building on Asylum Avenue there was not one complaint. The same is true for virtually all of our group homes."

Dick Brown feels that HARC has remained a family-oriented, grassroots organization that doesn’t push any one particular philosophy. Instead, Dick believes HARC’s approach to parents is, "Tell us what you and your family need and we will adapt and do things accordingly."

Or, as Edith Kelly says, "Each of these stars that we’re taking care of has their own brilliance and if they’re helped right, they will shine."