Behind the bar at Simpatico, a popular Italian restaurant in Wallingford, a framed photograph of a good-looking blond guy sits on a shelf facing the dining room. It's the only photograph in the restaurant, and it naturally draws the eye. When customers ask Simpatico's manager, Sarah Blake, who the guy is in the photo, she tells them he's Simpatico's guardian angel.
"He's the embodiment of Simpatico, the spirit of the place," Blake tells me, looking up at the framed 8" by 10" picture of Karl Enochs. We're sitting at a table in the bar on a slow weeknight. Blake gestures up at the framed picture and shakes her head. "He was always laughing. Whatever you wanted, he could get that for you. If he couldn't get it, he'd get you something better. He was a great waiter, a wonderful person."
Karl was on the Northwest AIDS Foundation's speakers' bureau, and according to Blake, he always seemed amazed that he was sick. "He looked at the whole thing--his illness--with this odd sense of wonder," Sarah remembered. "And it forced him to reconcile with his family. His father didn't know he was gay until he got sick."
Karl died in 1994, when he was 33 years old, surrounded by his lover Bob (who died a year later) and his biological family. Karl's parents came to a memorial party held at Simpatico. "They brought all these photos, and Karl's dad let us keep his high school graduation picture. He's wearing this big velvet bow tie, and he looks just great. We've had it up behind the bar ever since."Shortly before Karl's death, Blake helped organize Chicken Soup Brigade's first annual Dine Out For Life fundraiser, a night when participating restaurants donate a percentage of their proceeds to Chicken Soup Brigade (CSB). Working with CSB's then-Development Director Judy Werle, and the owners of the Coastal Kitchen, Blake helped to establish what is now CSB's most lucrative fundraiser.
"We couldn't have gotten it off the ground without Sarah," remembers Werle. "She marched into restaurants and told people, 'Look, you're doing this.' She had all the industry contacts, and single-handedly signed up the majority of restaurants that first year. She even hosted organizational meetings at Simpatico."
But Simpatico isn't participating in this year's Dine Out For Life, which takes place next Thursday, March 11.
When a CSB staffer called Blake asking her to sign up for Dine Out, she told them Simpatico wouldn't be participating. "I said I just don't know anybody that's sick anymore, not sick with AIDS. I know a lot of women with breast cancer, though, and I know there are people out there who are sick with other stuff and they can't get services. It didn't seem right."
Blake had recently lost her good friend and roommate to breast cancer, and was still grieving when the call came from CSB. "She was diagnosed too late to do much about it," Blake told me, "and she was gone in two weeks. But if she had hung on longer, we would've needed help, for sure, and knowing that help wasn't out there for her made me sad."
Blake asked the staffer whether CSB was ever going to provide services to people dying of other diseases, and was told that CSB was beginning a pilot project.
"He tells me it's going to be for 50 people and it's going to cost them $60,000 before they can put it in effect," said Blake. "They have to spend $60,000 before they serve a single meal to anyone? I asked if we could earmark our donation for this nebulous thing, this expensive 'pilot program' for 50 people, and he said no. It felt like backpedaling to me. 'I'm writing a grant right now...,' he told me. I was like, 'Okay, then don't let me keep you on the phone. You go write your grants, and when you're taking care of more people, you call me then.'"
Simpatico regularly makes donations to local charities, Blake told me, and is committed to giving back to the community. "We're doing a lot of worthy causes," Blake said, "kids, women's issues, you name it." But after 10 years of helping to raise money for AIDS groups, Blake felt she had to "step back."
"And I can't ask my customers to give money to something I don't believe in right now," Blake explained. "I just don't know people who are sick [with AIDS], people who are really, truly so ill they need meals delivered to their homes."
What could CSB do to win back Blake's support? "Serve all the people who need that kind of help. With their brand new computers and '90s machinery, with their fancy kitchen and well-paid staff--stuff the community paid for--they could really be keeping up with what's actually going on. And they're not. They're sitting around 'writing grants.'"
Chicken Soup Brigade has changed its mission in the past. The group was founded in 1982 by a small group of men at the Seattle Gay Clinic. They came together to serve gay men suffering from hepatitis, and quickly expanded to serve gay men with any disabling illness. By 1984, the needs of gay men with AIDS were so great that CSB changed its mission, focusing exclusively on the needs of AIDS patients. A few years ago, CSB expanded services to low-income people who are infected with HIV.
"There are people with AIDS that still need services, but not as many as there used to be. And there are other people out there who need help," people just as sick or sicker than a lot of people with HIV/AIDS these days. Blake feels its time for CSB to expand their services again.
"What about [terminally ill] women with breast cancer?" she asks. "Who's taking care of them?"No one, according to Deb Schiro, Program Manager for Breast Cancer at American Cancer Society (ACS).
"In terms of breast cancer, most of ACS services are specific to getting people into treatment. We do transportation, but only to out-patient services. We also have limited emergency funds to keep a woman's power from being turned off, and we can provide canned liquid nutritional supplements on an emergency-only basis for people who can no longer tolerate solid food. But the care-giving that AIDS patients get--the delivery of meals, movie and theater tickets, home chores, and that sort of thing--isn't currently available to people with cancer."
In Washington state this year approximately 3,800 women will be diagnosed with breast cancer, according to Schiro, and 1,000 women will die of the disease. In 1997, the most recent year that statistics are available for, 89 people in King County died of AIDS; 250 women died of breast cancer. Schiro estimates there are probably 200 women in King County right now who could benefit from CSB services.
"I'm glad that CSB is looking toward addressing other chronic illnesses," said the Lesbian Cancer Project's Paula Wolfe (whose offices are located in one of CSB's buildings). "I think food service is definitely something that should happen for women with breast cancer, and this is definitely a population that would use that service."
Wolfe believes the need for CSB-like services for lesbians with cancer is very real, and thinks that CSB's upcoming pilot program, as well as recent overtures from Seattle AIDS Support Group about doing groups for lesbians with cancer, are both positive signs.Another woman who had to step back from AIDS was Chris Andrews, CSB's former volunteer coordinator.
"I pulled back because I wanted Chicken Soup to serve people who had needs but did not have AIDS," Andrews told me. "And working at [CSB], I was seeing people who did not need services anymore continue to receive them. I saw clients who made more money on disability than I made working full time at Chicken Soup. I had clients tell me they felt good enough to go back to work, but weren't going to go back to work because they didn't have to. That wasn't [the case for] all clients, but it was happening with enough frequency that I didn't feel good about working there anymore."
At the same time, Andrews was getting calls from women who were sick or dying and wanted services. "I had to tell them we couldn't help them, which was very hard. They'd ask, 'If you don't do this, who does?' I'd have to tell them nobody does."
Andrews' early experiences in AIDS work were more positive--even uplifting. "One of the beautiful things about the response to AIDS was how smart people moved fast to set up organizations and serve people," Andrews remembered. "There were people dying, that was the whip. Women are dying of breast cancer too, people are dying of other stuff. Why can't that be a whip too?" Andrews hasn't donated any of her time or
money to CSB since she left. "As soon as they start serving women with breast cancer and other people who are sick," said Andrews, "then I'll start writing checks again."Christopher Malarkey is CSB's current development director, and he's charged with finding the funds for the pilot program. He's also the person who turned down Simpatico's offer to take part in Dine Out if they could earmark their money for the program.
Malarkey says he had no choice. "All the publicity for Dine Out is out already," Malarkey explained, "and all the publicity says Dine Out supports services for HIV and AIDS," and not services for anyone else. Malarkey hopes to have the program up and running by August, but he has just one pledge so far: $2,500 from an individual donor whom he won't name.
When CSB finds the money, it will create 50 slots for non-HIV/AIDS clients, but these clients will not qualify for the same services as CSB's other clients. "It will consist of home-delivered fresh meals to people who are low-income," explained Malarkey, "and living with a chronic or terminal illness." These clients will not qualify for home chore services, transportation services, groceries, movie and theater tickets, or thrift store vouchers; the pilot program will be, in effect, a second-class CSB service.
The pilot program will last 12 months. When it ends--in the fall of 2000--CSB will evaluate whether the program was successful, and what action to take. Conceivably, if the 50-person pilot project is successful, CSB could expand services sometime in 2001. By that time, of course, another 500 women in King County will have died of breast cancer.
"Our primary goal [in launching this program] is to respond to an identified need in the community and to evaluate our ability to do the job," Chuck Kuehn, CSB's Executive Director, wrote in response to questions he asked me to e-mail him. "We are currently analyzing our ability to manage this expanded programming with existing staff versus adding staff. As of this writing, we are seeking $60,000 to launch the program."
Chris Andrews thinks CSB should expand services now, and not waste time on a pilot program. "That they're slowing down to do a pilot project makes CSB sound like the people they used to criticize: slow, bureaucratic groups that couldn't move fast, couldn't get things done. People at CSB used to be brave and bold and creative and got it done no matter what. Why don't they feel like that now?"
Andrews thinks it may have something to do with subtle institutional sexism. "When gay men were sick, we moved fast, took on more work than we could do, and did services, not pilot programs," said Andrews. "We weren't cautious, we were ambitious. Now, when there's this opportunity to serve women, there's all this caution, and you have to wonder why they're moving so slowly. The system is already set up! These programs are not difficult to administer, and putting someone else on the client rolls should not be that big of a deal!"
Werle worked at CSB for eight years, and says an implied promise was made to the women at CSB. "Once we had the resources, once AIDS was under control, women would be taken care of. Well, AIDS is under control, and women are not being taken care of."
Werle finds the continuation of CSB's free movie and theater ticket program for its clients to be a particularly galling example of CSB's messed-up priorities. "I was one of the people who came up with that program," she said. "It was intended to give people who were dying and their caregivers a break from looking at their four walls and thinking about death. It doesn't make sense to keep running a program that gives theater tickets to fairly healthy people when people who are dying--hello, dying!--aren't getting food."
Of CSB's plans to launch a pilot program if they can find grant money to finance it, Werle said, "I don't know how they can say, 'We're going to do this program if we can find the funds.' I don't remember anyone saying, 'We're going to take care of people with AIDS when we can get a grant.' We said, 'We're going to do this because there's a need, and because there's a need, we'll find the money.'""Sarah is lucky to not know anyone who is sick with AIDS," responded Chuck Kuehn, to Blake's decision to pull out of Dine Out. "Unfortunately, the staff and volunteers at CSB have a different perspective.... Many [clients are] doing better, but clearly there is still a significant number of individuals who are still very sick." But Kuehn wouldn't say how many of his clients are so sick they're homebound: "It depends on their ever-changing medical and psychological condition."
Of Blake's concern for women like her roommate--women dying of breast cancer who can't get services while CSB provides services to otherwise healthy people who have HIV--Kuehn responded: "The fact that more women died of breast cancer than died of AIDS in 1997 is a sad fact. We hope the community will step forward and demonstrate as strong a commitment to [women with breast cancer] as they have to people with HIV/AIDS.... We hope those in the community who have been so vocal about us serving other populations will step forward and help us fund this program expansion." Kuehn states that he personally is in favor of expanding CSB services to "as many people in need as possible. That dream, however, is tempered by the reality of funding."
While Andrews thinks CSB should simply open its doors, expanding services to those who need them, Werle suggests that if a pilot program is necessary, CSB has enough money on hand to fund it themselves. "There are cash reserves--hundreds of thousands of dollars of reserves--that they have on hand. Why not spend some of it? Why tell dying women they have to wait for services while they look for grant money? Why can't CSB grant the money to itself? The money is invested, and they could fund this pilot program off the interest alone."
"On the advice of our auditors and based on standard operating procedures for well-managed non-profits," Kuehn states, "CSB maintains two to three months' cash reserve to cover changes in government reimbursements and to meet emergencies."
That there are nearly three times as many women dying of breast cancer in King County than people dying of AIDS is a "sad fact," according to Chicken Soup Brigade.
