There is an old picture of me. It was taken before I was a priest and a professor of ethics, before I went to graduate school and seminary, even before I trained and practiced as a nurse. I am 17. I am sitting on the floor of a school with a 5-year-old named Matthew on my lap. It's a stormy day and the kids from the Easter Seals day camp have been sent home early, but Matthew's bus is late and he is frightened. Matthew has spina bifida but is embarrassed to wear his braces. He sits as much as possible.
Matthew had a hard time believing anyone loved him. When we told him we loved him he said, "Nuh-uh. Not with braces. You can't love me with braces." Matthew had already learned he was different, and different back then meant unlovable.
The Easter Seals camp was held at a rehabilitation center for "the handicapped." It was one of the first schools for disabled children. In the early '60s, most disabled children did not go to school at all. They were "tutored" a few times a week (if at all) and kept isolated at home. Disability and illness were shameful. It was only through hard work, usually by the disabled and ill themselves, that they were able to move from confinement to special centers to mainstreaming.
The disabled and chronically ill, as sociologist and theologian Nancy Eisland has remarked, want an ordinary life. They want neither pity nor special treatment. They want to live like anyone else and want the recognition that they contribute to family, community, and society. They don't want to be ashamed of who they are, nor do they want to be heroes or over-comers who everyone admires.
Read the Full Article
