Living With AIDS
AIDS was big in the news this week: 3,000 experts, politicians and patients were gathered at the United Nations to discuss new treatments and progress toward a cure. U.N. Secretary General Kofi Annan declared that $10 billion a year is needed to fight the plague that afflicts 36 million people and has killed 22 million. So far, the worlds richest nations have ponied up 5 percent of that.
Meanwhile, right in the middle of Los Angeles County, a local government has been dealing with a controversy involving AIDS survivors that suggests how complex the social, as well as medical, issues can be.
For 10 years after the 1981 discovery of the AIDS virus, the question was less about how to live with the disease than about how long youd live, period. Death was certain, the tragedy so apparent and widespread that the disease became a global priority. And, after a decade of research, agony and tragedy, AIDS, at least in this country, is no longer a death sentence. First with AZT, then with further combinations of costly drugs and chemicals, the disease can finally be not eliminated, but held at bay.
Today, we no longer have what we once called AIDS victims, but rather, people with AIDS. Many of whom are leading lives far closer to normal than they ever dreamed possible.
Of course, there are PWAs and PWAs. On the healthy, confident edge, theres Magic Johnson, threatening to run for mayor in four years if Jim Hahn doesnt perform up to expectations. More typically, there are people with AIDS everywhere, carrying on normal occupations at a more or less normal pace. And then there are those who are further along, or relapsing, who need assistance to survive. Five years ago, enlightened communities created a new kind of housing for PWAs: a change from hospice care for the dying to affordable housing for those whose lives had been prolonged. Such housing was termed independent living. The general abbreviation was HOPWA publicly and privately funded Housing Opportunities for Persons With AIDS.
This was a great and generous idea. But now the question arises: Does this kind of care, as conceived in the mid- to late 1990s, meet the developing needs of its clients? Or should it perhaps be redirected on the basis of subsequent experience?
What raises this particular issue is a recent dispute in the city of West Hollywood, certainly a leader in independent living of every possible description. And certainly a trailblazer in providing independent-living facilities for those who can prove themselves unable to earn enough, due to AIDS-related disabilities, for normal rents.
The citys Palm View project, to all appearances, embodies the independent-living ideal. An inconspicuous, but architecturally perfect, apartment house with 40 units, a little south of Sunset Boulevard, it has spacious public areas and expansive one-bedroom units, all in bright, sunshine colors. The rents are subsidized well below market rate. Youd probably want to live there yourself, if you didnt know that you had to be diagnosed with a mortal illness to get in.
Palm View was built in 1998 with an ingenious combination of $6.5 million in public and private funding. West â Hollywood Community Housing Corp. executive director Paul Zimmerman describes a five-year struggle both to bring the project together and to persuade nearby residents to accept their new neighbors. Its fully occupied, with a waiting list.
At its worst, its like a hospice with no staff, said one of the seven signatories of a letter sent by Palm View residents to members of the West Hollywood City Council, which oversees the local housing corporation responsible for Palm View as well as another AIDS apartment complex, plus hundreds of units of West Hollywood low-income and senior housing. The signers, who represent about 20 percent of the current residents, do not have what others might see as large issues with the buildings management. None of the complainers wants to leave.
Its inconvenient for sick people, according to one of the signatories, a 62-year-old professional man, whom well call Ed. The gripes have much to do with how the residents and on-site management feel they get along. There are complaints that crucial deliveries of pharmaceuticals often after hours havent been permitted. That medical-support people have had a hard time getting in. There are complaints of evictions that might have somehow been avoided, of residents cars being ticketed in the on-premises car park, a balky intercom that relies on private phones. Mostly, however, the differences relate to interactions that the letter refers to as having turned the place into a cold, indifferent institution, particularly for those experiencing the physical and mental nosedives typical of users of the various AIDS-drug cocktails, which themselves can have unforeseen and severe effects on the patients health.
Independent living is for people who can live on their own, counters West Hollywood housing director Zimmerman. Keep in mind that this is a housing department, [not a] service provider. He notes that for those who need it, hospital and hospice care is available. This is an agency-rich community.
That it is, indeed. Theres Project Angel Food to make home grocery deliveries, AIDS Project LA for counselors and case management. There are non-specialized organizations like the Actors Fund, which financed much of Palm View and helps many of its residents.
But who coordinates these various services that are so important to residents? To make sure they work together, and cooperate with management to make sure caregivers can get in when they need to and deliveries are made when required? To make sure that Palm View works for its least-able clients?
Actually there is such a person. Her name is Lee Meyers, shes the director of resident services, and shes responsible for Palm View and West Hollywoods other HIV residence. She does everything from arranging movie nights to coordinating casework to trying to keep neglectful tenants from being evicted. But because so much of her work is confidential, she acknowledges that it may not be apparent to many residents, some of whom, she feels, are unfairly hostile to her. One of her employers described her position as a burnout job.
According to Meyers, eight Palm View residents have died. This creates a pervasive fear. In addition, many suffer from low self-esteem because it is hard to have to ask for help. Some have said that Meyers problem is that she has an in-between job, working for management while also representing the residents. The people need an advocate, says one local official, who lives with AIDS himself. Ed says typical problems range from forgetting your keys to forgetting to pay rent to collapsing on the street all carrying the stigma of humiliation.
Actually, for an unknowable number of people with AIDS, independent living may be a contradiction. You can take 14 pills a day and still not be healthy, says Jeff Prang, a West Hollywood city councilman whos become involved in this issue. He adds, Many of the residents complaints are reasonable.
Some grievances are being addressed. This week, there was the first open meeting between Palm View residents and management in a long time. New rules for admission of guests and caregivers along with crucial deliveries are being created. Building management (another burnout job) is being changed.
But the ultimate change may have to go far beyond West Hollywood to the way society in general thinks of AIDS survivors. And forgets about them and their continuing needs.
If you have a name thats tough to pronounce (take it from one who does), certain people will delight in mispronouncing it. Particularly superiors out to prove how little they think of you.
So it was fun to watch this tactic backfire last week in federal court, where 29-year LAPD clerical employee Theresa Schell collected $3.6 million from the city after the LAPD first demoted, then fired her for testifying that there was no official excuse for the city to delay overtime payments to police employed during the 1992 riots. Bernie Parks was himself hit with $500,000 in punitive damages.
According to City News Service, what particularly outraged the jurys foreperson was that Chief Parks, throughout his testimony, kept mispronouncing Ms. Schells last name as Schnell. I guess that, like everything else, the cost of nomenclatural derision is going up these days. Thats fine with me.
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