AIDS: Blocking the Lights

Despite all the talk about "a thousand points of light," it can be tough to be a Good Samaritan these days—especially if the people you want to help have AIDS. Ask Charles Baxter.

The difficulties he encountered in trying to open a hospice in Belleville, Illinois, are typical of the obstacles faced by dozens of individuals and groups across the country seeking to provide housing for people with AIDS. In addition to the inevitable fund-raising problems that novel charities face, they more often than not encounter community hostility and political interference when they announce their plans.

Baxter, a home health-care provider for 15 years, became aware of the terrible housing crisis that faces many terminally ill AIDS patients after caring for several clients with the disease. He told the Chicago Tribune: "For eight or nine months, I was working with AIDS patients in their homes. With one of my patients, there were 26 family members around him when he died. I couldn't help but think that by comparison, there are people who have no one around them when they die, and I decided to start the home."

Baxter sold his car, his pickup truck, some antiques, and his house to get enough money to rent and remodel a three-story house, which he named "Our Place." He also received help from community volunteers. By early 1989, he had found three people who were HIV-positive, homeless, and ready to move into Our Place. He hoped eventually to house up to seven residents.

All Baxter needed was approval for a special-use permit from the Belleville City Council. The Belleville zoning board seemed receptive to the idea of a hospice for the dying until it discovered that Our Place was meant for AIDS patients. Then the board voted unanimously to recommend that the city council deny Baxter's request. Opponents of the project voiced fears that the hospice would hurt property values and lead to the spread of AIDS in the community. In the end, the council voted 9-7 to deny the permit, although it was unable to cite any specific zoning provision to support its decision.

With the assistance of the American Civil Liberties Union, Baxter filed a suit under federal civil-rights statutes, alleging that the city of Belleville had engaged in discrimination against the handicapped. U.S. District Judge William D. Stiehl found that the potential residents of Our Place posed no threat to the health of the surrounding community and that "irrational fear of AIDS was at least a motivating factor in the City's refusal to grant Baxter's special use permit.…The court finds that the public interest can best be served if discriminatory actions based on irrational fears, piecemeal information, and 'pernicious mythologies' are restrained." Stiehl ordered the city to allow the hospice to open and to pay Baxter $29,000 in damages.

But the story does not have a happy ending. Baxter finally opened Our Place in November 1989. He closed it two months later. He said he was emotionally and physically drained and that he had difficulty raising money. To add insult to injury, the Illinois attorney general is investigating whether Baxter failed to file the forms required by the state's charitable trust laws.

Very few individuals would have the fortitude to make it even as far as Baxter did. Care for AIDS victims is an expensive and complicated matter.

At different stages of the disease, victims have varying needs for care. Those who temporarily recover after hospitalization merely need a place to live. Many can return to where they lived before or stay with friends or relatives. But others, jilted by lovers, abandoned by family and friends, and broke and jobless after a long hospital stay, have nowhere to go and find themselves homeless or on the verge of homelessness.

Those who are suffering the ravages of AIDS but are not in the terminal stages of the disease need help with feeding, bathing, and other basic activities. Often friends and lovers help, but the strain is frequently too much for them to handle without professional home health-care assistance, which is beyond the financial means of many AIDS patients.

People in the terminal stages of AIDS need constant attention. Often they are lucid for only part of each day, and they rely completely on the care of others. Many of these patients wind up in hospitals, which are not equipped to deal with them appropriately.

In response to these problems, charitable organizations, gay community groups, religious organizations, and an occasional heroic individual such as Charles Baxter have tried to provide appropriate accommodations for people with AIDS. For those who are able to care for themselves, group homes have been organized with rent based on ability to pay. Other organizations have established nursing homes or adult day-care centers for AIDS patients in need of more attention.

Still other groups have set up hospices where AIDS patients can live out their last days with dignity. Because hospices, unlike hospitals, are constructed to care for, rather than treat, the dying, terminally ill patients often find them far more congenial. And hospice care is not only better for the patients, it is more efficient, costing only one-tenth to one-third as much as hospital care (which is usually at public expense).

Despite the benefits of AIDS hospices, those individuals and groups who have taken up the burden of providing housing and care for AIDS patients must fight community opposition and government roadblocks, even when the facilities they plan are desperately needed. If land-use rules are not sufficient to stop AIDS care facilities, demagogic politicians may try other means to get rid of unwelcome AIDS hospices.

When the Monastery of the Glorious Ascension, an Eastern Orthodox monastery in Whitfield County, Georgia, opened a 15-bed AIDS hospice over community opposition in 1989, the Whitfield County Commission approved a resolution asking residents not to donate money to the hospice or volunteer there. When that gentle persuasion didn't close down the hospice, the county tried a more coercive approach. The Whitfield County Solid Waste Management Facility stopped accepting trash from the monastery, claiming that adult diapers, rubber gloves, and other material from the hospice constituted hazardous "medical waste."

Father Damien, abbot of the monastery, pointed out that his monks follow waste-disposal guidelines set forth by the Centers for Disease Control and that the monks have agreed to follow guidelines set by landfill officials. While landfill officials denied any political motivation for the waste ban, the hospice's lawyer called the landfill's decision to refuse the waste "blatantly discriminatory."

Even when local officials cooperate, the task of those who find housing for AIDS is complicated by community opposition. A chant at a 1988 rally against a planned AIDS-patient nursing home in Wanaque, New Jersey, summed up the typical attitude: "NIMBY" (Not In My Backyard).

The Catholic Church, which runs many AIDS hospices, has learned the hard way that community fears must be taken into account when planning a hospice. In 1985, when the Archdiocese of New York announced plans to open a hospice on West 98th Street next to the parish parochial school, local residents responded with anger, fearing that their children would somehow catch AIDS from the hospice. Parents of children attending the school picketed the sponsoring church, and the archdiocese reluctantly decided to set up the hospice elsewhere. Since then, the church has steered clear of hostile communities when planning its hospices.

Other groups have decided to face down local opposition. In Seattle, a nonprofit organization called AIDS Housing of Washington has received permission from the city hearing examiner to build a 35-bed, $7-million AIDS hospice in a business district, despite the protests of local businesspeople. The hospice would provide not only beds for dying patients but also adult day care for those who would otherwise have to be placed in nursing homes.

Opponents, however, were not cowed by the group's initial victory. They have so far filed two appeals claiming that the hospice does not belong in a business district, that if it does locate in a business district there should be retail space on the ground level, and that the hospice would not provide enough new parking spaces to meet its demand. One local businessman told the mayor and city council that "like it or not, most people do not wish to be around ill people often, and here we may be adding the sorts of behavior sometimes associated with AIDS—overt homosexuality, dementia, and drug abuse."

Proponents of the hospice responded that terminal patients would be confined to the building and that day-care patients would arrive and depart by shuttle. Moreover, the hospice would actually benefit nearby businesses. It would occupy a vacant lot and draw visitors who might patronize local shops and restaurants. Despite the continuing controversy, AIDS Hospice of Washington plans to break ground this fall.

To avoid the problems encountered by so many AIDS care facilities, some AIDS housing groups who have the local government's tacit cooperation and support simply do not inform the neighbors of their activities. Damien Ministries oversees five group homes in Washington, D.C., and two in suburbs of Chicago. The organization rents each house to between three and seven people who are HIV-positive. They then form a mutual-support group. To head off community antagonism, Damien keeps a low profile while searching for appropriate sites and does not notify neighbors when it sets up a group home.

Eventually, the neighbors find out, but by then the residents are already well established. The misconceptions and fears that neighbors usually have about AIDS homes—ambulances arriving at all hours, drug abuse on their lawns, wild homosexual activities—have already been dispelled, so the neighbors do not object. Other AIDS housing groups, from New York to Los Angeles, follow a similar strategy of anonymity.

With more than 1 million Americans estimated to be infected with the AIDS virus, the need for kind, efficient care will grow. In many major cities a large percentage of hospital beds are already taken up by terminal AIDS patients, even though the hospitals can do nothing for them. They simply have nowhere else to go.

Fortunately, the hospice movement and other AIDS housing efforts are expanding rapidly. Their pioneering efforts will smooth the way for similar endeavors by others. As AIDS becomes more common, and as more Charles Baxters win lawsuits, public hostility to AIDS facilities will begin to peter out.

Decades ago, tuberculosis hospitals faced similar opposition. At first, some judges upheld restrictions aimed at such hospitals on the grounds that they constituted a public nuisance because they generated fear in the community. Eventually, however, the courts began to base their decisions on scientific reason, rather than the emotions of local residents. Tuberculosis was the cause of one out of every seven American deaths, and the need for sanitariums began to outweigh claims of fear.

In 1921 a California court ruled that "a well-maintained, modern hospital, even one for the treatment of contagious and infectious diseases, is not…a menace, but, on the contrary, one of the most beneficent of institutions.…There is not the slightest danger of the spread of disease from it, and this is the only possible ground on which objection could be made to it. We have no hesitation in holding an ordinance prohibiting the maintenance anywhere within a city of an institution so necessary in our modern life and so beneficent to be wholly unreasonable."

That wisdom applies with equal force to the AIDS housing situation, and modern civil-rights statutes lend the argument even more legal weight today. Given time and a few more court battles, people will come to recognize that they cannot use their own irrational fears to restrain the compassionate efforts of their fellow citizens.

David Bernstein is a student at Yale Law School and an adjunct fellow at the Manhattan Institute for Policy Research.