This part describes Melvin White's life today and reflects on his history and experiences in the institutions and in the community.
A Profile of Melvin White
Melvin White is a 77 year old gentle charming man. He is thin and tall and his hair is all-white. Mel, as he likes his friends to call him, is a man of peace. He wants people to be at peace with each other. Fights and conflicts bother him very much. Therefore, to keep the peace, he often keeps quiet about his needs and wishes and does not make demands on his own behalf if he thinks it might result in conflict.
Melvin has severe cerebral palsy and uses a wheelchair. He can use his feet to push the wheelchair a short distance but has limited use of his arms and hands. His right hand is turned in at the wrist due to muscle contractures and he has difficulties moving the arm which is most often tucked behind his back. He has more use of his left arm. He can move the arm and some of the fingers and uses his left hand to move things on a table in front of him, wave to people, hug them, and so on. With regard to Melvin's intellectual ability his records describe him in various ways. At one point his IQ is said to be 37, at another time it is said to be 80, he is also labelled as having "borderline mental retardation," and being "non-mentally retarded." One of his friends said: "Mel may not have been retarded on the outset, but because of his experiences he is now functionally retarded."
As Melvin has grown older he has lost some of his hearing and uses a hearing aid. Because of Melvin's cerebral palsy it is very difficult for him to speak and his speech is very unclear. "He is very soft spoken," as Lori phrases it. People who do not know him well have a hard time understanding what he says. Melvin is "not in the best of health" as he himself puts it. He has stomach problems, respiratory problems such as asthma, he also frequently gets pneumonia, and has other health problems.
Melvin is a religious man. One of his friends describes him as being, "One of the most spiritual persons I have ever met." Mel goes to church most Sundays together with this friend or other members of the congregation who come and pick him up on their way to church. He is known as "Brother Mel" at church.
Only two of Mel's siblings are still alive, his sister Marie who is 81 years old, and his youngest brother Sean, who is a little younger than Mel. Both of them live about two to three hours drive from Newtown. Since Lori started working with Mel she has assisted him to stay in regular contact with them and has made sure he can go and visit them at least a couple of times a year. Melvin has a very large extended family. Marie alone has almost 100 direct descendants. She has 14 children, 39 grand- children, and 40 great-grandchildren. This huge family has a family reunion once a year and Melvin has attended the family reunion the past couple of years with Lori's assistance. Before Lori started working with him, he had only managed to go to a couple of these family reunions.
Melvin has a small number of friends and a large number of acquaintances. Most of these people are former staff at the institutions where he has lived or people he got to know through the human service world.
Melvin's History
Melvin was born in 1912 in a small town in one of the northeastern states. He is the next youngest of six brothers and sisters. Melvin was first institutionalized at the age of three when his mother became ill and he was sent to Empire State School. Melvin stayed at Empire for four years. He developed a double pneumonia and became so sick that the doctors at Empire thought he was dying. Because they thought it would be better for Melvin to die at home, they asked his parents to come and get him. Melvin's father came and brought him home. Melvin recovered from the pneumonia and lived with his large lively family until he was 16 years old.
Melvin's mother died suddenly in 1927 and Mel went back to Empire State School the next year. His second stay at Empire was initially only intended to be temporary--one or two years--but he ended up spending 45 years of his life there.
In 1973 Melvin moved to Hill Developmental Center where he lived until 1979, when he moved to Newtown Developmental Center (NDC). At the age of 72 Melvin moved out of NDC in 1985 after having spent over 60 years of his life in state institutions. He moved into an ICF/MR (Intermediate Care Facility for the Mentally Retarded) in an apartment building downtown Newtown, where he now lives with three other people who also have disabilities. It took a lawsuit to have him released from the institution. When I asked Melvin why he had wanted to move out of the institution he answered: "I wanted to be free." Two of Melvin's friends have told me that he wanted to leave the institution before he died.
The first two years after Melvin moved out of the institution he kept going back there every day to attend a day activity program. Melvin "retired" from the day activity program in 1987.
Surviving the Institution
Melvin's life has been filled with neglect, abuse and isolation. He has had a very hard life. After spending time with him I have developed a great deal of respect for the way he has survived living under such conditions for over 60 years. Melvin's life demonstrates how some people can go through unbelievable difficulties and humiliation, and still come out of those experiences without being destroyed. Mel is sometimes bitter because of how his life has been wasted. Yet, he survived these experiences and came out of the institutions with faith in the goodness of other human beings and willingness to trust them. He has kept his dignity and is warm, friendly, and gentle towards people. He has a great sense of humor and a positive outlook on life. Melvin finds it difficult now to think about and talk about his life in the institutions. When I asked him about the institutions he said:
Struggling in the Community
Moving into the community did not bring Melvin the freedom he was hoping for. Instead he was almost as isolated as when he lived in the institution. As it turned out, the staff at NDC had made efforts to assist him to participate in community activities similar to what the staff at the apartment did. Melvin became desperate and depressed. One of his closest friends described this in the following way: