Ed’s Story


Ed was about thirty-five years old when he began telling people he wanted an “apartment building”. People at Ed’s support agency, KFI, had been TASH members for a number of years and were informed and inspired by many leaders in the area of 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 supports from KFI. Ed wanted this same opportunity, but apparently wanted an entire building rather than a small piece of it!

Ed’s residential history included living with his family in Connecticut and Maine until the age of seven when he was sent to live at Pineland Training Center, Maine’s institution for people with intellectual disabilities (now closed). As a young adult, Ed was transitioned out of Pineland Center to a variety of foster homes, finally ending up at a foster home in Lincoln, ME where he lived for 17 years. Ed was always described as having “aggressive behaviors”.

Although Ed continued to see friends move out of foster homes or their parent’s homes and into places of their own, his interest in doing the same was always met with strong resistance from his family. The foster home that Ed was in certainly did not support that choice and Ed had to live a life under the control of his foster providers. It was not a full life or a valued life.

In the meantime, while Ed was still living in the foster home, he began working at the local McDonalds, which provided Ed with the job supports he needed (i.e., natural/unpaid supports). This would be the beginning of new expectations!

Ed continued to talk about having his own apartment and KFI’s staff continued to talk with Ed’s guardians. His parents never thought he would be able to hold a competitive job – but he had, and they were so proud. They began to look at Ed in a different light. If he could do this then maybe he could do other things….

In the fall of 1997, through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed to his 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.

Ed revealed some of the restrictions of his former foster home life by standing at his bedroom door until someone gave him “permission” to come into the rest of the house. Despite the pleas of his support staff, it took months for Ed to realize that this was his home and that he could go wherever he wanted whenever he desired. He would ask permission every time he wanted to get something out of the refrigerator. Ed loves coffee but every time he had been allowed to drink coffee at the foster home, it was watered down. He learned how to make his own coffee and immediately discovered a difference in taste. His foster family used to put water on his cereal because of his allergy to milk. Staff introduced Ed to lactose free milk; what a difference in taste! Small things, maybe, but life changing for Ed.

Ed delighted in showing visitors every part of his home, highlighting his appliances, yard, cellar, etc. For this man in his 40’s it was the first time he possessed and controlled anything in his life.

Ed continued to demonstrate his desire to live alone – sometimes using powerful actions to express himself. Following TASH values, KFI believes in providing the supports an individual needs to succeed and not in placing the person into a program or established structure. Through a complicated and purposively murky rearrangement of resources, KFI found the opportunity to support Ed to live the life he wanted, so he moved into his own apartment without a roommate.

Because Ed had achieved success in his efforts to live in his own place, have a job, and be part of the community, in the fall of 1997 he was part of a team presenting the art of the possible at a TASH National Conference in Seattle, Washington. Although he uses few words, he was able to express his delight at being part of the conference and appreciated how others described his accomplishments. He shared a hotel room with the Executive Director, 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.

On the return flight, KFI’s Executive Director had this sudden insight: if 20 years before this conference we had been at a meeting in the state institution where Ed had been forced to live, and those present had heard about a future in which Ed would live in his own apartment – albeit with assistance; where he would be a valued employee with the employer providing all the supports; that he would fly across the country to participate actively in a TASH national conference; that he would be recognized positively throughout his community as a worker, neighbor and friend; then those presenting this future world of possibilities would have been whisked into the delusional wing of that institution. But in reality all that and more has happened. The question is: what has changed? Ed remains the same man he has always been; it is us who have changed – society, attitudes, and the realization of the art of the possible. The same relative 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, right across from Mattanawcook Lake, and enjoys being the host when people come to visit. He has been employed by McDonalds for thirteen years. He volunteers at a local food cupboard, he 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 stops in to have coffee or a soda with Ed on a regular basis. He visits with old friends whenever he chooses, often sharing a meal.

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”.

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