Mainstreaming Justice

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.

The 1990 Americans with Disabilities Act was only a start, a "second wave" of a liberation movement for the disabled. However, a large portion of society persists in its rejection of people who are physically and psychologically different. Some politicians want to repeal the act, saying that it is too broad. Instead of being heroes, the disabled and ill are now "cheats," looking for an easy way up or out.

The health care debates expose the difficulties insurance providers pose for those with chronic conditions. New treatments are classified as "experimental," and therefore are not covered. The government's so-called "drug war" has had a deleterious effect on those with severe chronic pain. Although studies shows that people with pain are both undermedicated and not prone to addiction, doctors still refuse to give adequate medication - some out of ignorance, and some out of fear that the DEA will take their licenses away. Pharmaceutical companies spend little on research for the "orphan diseases" such as multiple sclerosis and lupus, and when a new drug is discovered, the price can be staggering. Many families are bankrupted caring for their ill or disabled member. Need and dependency are so hated by our society that euthanasia and assisted suicide have been put forth as better alternatives than interdependence. We need health care, pain control, and support for families to empty euthanasia and assisted suicide of their terrible attraction.

MOST PEOPLE WANT to avoid the ill and the old because they remind us of our own inescapable vulnerabilities. In the parable of the Good Samaritan, Jesus taught that ignoring those who suffer is a common response. Yet he demonstrated care and concern for the physical and psychological outsider. The sick and lame encountered by Jesus often taught him something new and crucial. In his crucifixion, he willingly became one of them. When God raised Jesus up, it was not a "perfect" Jesus - the wounds remained. God has shown us that the resurrected life is different from our society's fetishistic preoccupation with beauty and strength.

At times the Christian community promotes the idea of illness as sin and attributes "failures" of healing to a deficiency of faith. Healing is not the same as curing. In the end, the only healing there is may be of the incessant demand for control.

We are all only temporarily-abled. Illness and disability can strike at any time. The disabled and chronically ill remind us how much in life is beyond our control. It is theologically and ethically appropriate to see God as having a preferential option for the disabled and ill, and thus for the church integrally to mirror this preference and work for justice concerning their well being. Throughout the New Testament, the church is called to be a community of interdependence. Care of the chronically ill and disabled is not a one-way street.

SUSAN DOLAN-HENDERSON is associate professor of Christian ethics and moral theology at the Episcopal Theological Seminary of the Southwest in Austin, Texas. She is herself disabled and lives with her husband and 4-year-old son. Glen Stassen, the Lewis B. Smedes Professor of Christian Ethics at Fuller Theological Seminary in Pasadena, California, serves as consultant and adviser for this Ethics page.

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