Ed was about 35 years old when he began telling people he wanted an “apartment building.” People at Ed’s support agency, Katahdin Friends, Inc. (KFI), had been TASH members for a number of years and were inspired by leaders in supported living to rethink how and where people with developmental disabilities could live. As a result, many of Ed’s friends were moving out of foster care homes and into their own apartments with support from KFI. Ed wanted this same opportunity, but apparently he wanted an entire building!
Ed had lived with his family until age 7 when he was sent to live at Pineland Training Center, Maine’s former institution for people with intellectual disabilities. As a young adult, Ed was transitioned out of Pineland Center to a variety of foster homes, eventually ending up in Lincoln, Maine, where he lived for 17 years. Ed was always described as having “aggressive behaviors.”
Although Ed continued to see friends move into places of their own, his family resisted the change. Ed’s foster home certainly did not support his choice, and he lived under the control of his foster providers. When Ed began working at the local McDonald’s, which provided job supports, it was the beginning of new expectations!
Ed’s parents never thought he would be able to hold a competitive job — but he had, and they were so proud. They began to view Ed in a different light. If he could do this, then maybe he could do other things….
In fall 1997, through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed to him renting a place with a roommate—better, but not ideal. Ed and his new support team located a roommate to share the costs, and Ed moved into his own place on October 13, 1997.
Once in his own home, Ed revealed the effect of his restricted former foster life by standing at his bedroom door until someone gave him “permission” to come into the rest of the house. Despite coaching from support staff, it took months for Ed to realize that this was his home and that he could go wherever he wanted. When he eventually learned how to make his own coffee, he immediately discovered that it tasted far better than the watered-down version he was used to. Ed’s support team also introduced him to lactose free milk on his cereal instead of water. What a difference in taste! Small things maybe, but life was changing.
Ed delighted in showing visitors every part of his home, highlighting his appliances, yard, cellar and other areas of interest. It was the first time that this man in his 40s had possessed anything and controlled his life.
Ed continued to demonstrate his desire to live alone—sometimes using powerful actions to express himself. Following TASH values, KFI rearranged its resources to support Ed’s desire to move into his own apartment without a roommate.
Because he had achieved success living on his own, holding a job and being part of the community, Ed was invited as part of a team presenting the art of the possible at a TASH National Conference in Seattle, Wash. He shared a hotel room, sampled exotic cuisines, rode an escalator for the first time and “told his story” – including what it was like to live in a state institution.
The contrast in Ed’s life is remarkable. For 17 years, he was institutionalized, then lived under foster care direction. Once in his own apartment, Ed became a valued employee and began participating in his community as a worker, neighbor and friend. Ed remains the same man he has always been; it is we who have changed – society, attitudes and the realization of the art of the possible. The same relative amount of money that kept Ed in an institution now supports him to lead a regular community life.
Ed’s life continues to blossom. He became a homeowner on December 20, 2005. He loves his new house on Taylor Street in Lincoln and enjoys being a host when people come to visit. He has been employed by McDonald’s for 13 years. He volunteers at a local food cupboard, attends music jams, plays bingo and has been attending the same church for over 18 years. He works out at the YMCA every week. And he has recently developed a new connection—the gentleman who mows his lawn regularly stops in to have coffee or a soda.
If you were to ask Ed about his life today, he would say, “I am happy, I am the boss, and it is my right.”