A Magical Place
An Innovator in Care, Bailey-Boushay House Strives to Ensure the Health & Well-Being of People Living with HIV/AIDS
by Stevie St. John
For Brian Knowles, decades of work serving those with HIV and AIDS began in New York City, one of the first cities ravaged by the epidemic. Knowles came out as gay in the early 1980s, and he saw what was happening to his community, including a good friend diagnosed with what was then called AIDS-related complex (ARC).
One day, as a volunteer for Gay Men’s Health Crisis, Knowles went to a hospital to discuss available benefits with an AIDS patient. When Knowles arrived, the man’s meals were sitting outside his room. The patient was covered with feces. No one had entered his room all day. Knowles cleaned the man up and sat with him. That night, the man died. That’s when Knowles knew he wanted to do HIV/AIDS work not only as a volunteer but as his sole vocation.
About twenty-five years ago, Knowles was recruited to run the outpatient program at Bailey-Boushay House in Seattle; after twelve years in that role, he took on his current role of executive director.
When Knowles first connected with the fledgling agency, he was impressed with how forward-thinking Seattle and its health department seemed. Whereas Los Angeles, San Francisco, and New York City were the epidemic’s front lines, Seattle was a “second-wave” city. Yet Knowles saw the community rally to establish a continuum of care for those living with HIV and AIDS—and those dying of it.
Knowles noted that half of the people in King County, Washington, who have died of AIDS-related causes died at Bailey-Boushay House. It’s a sad statistic but one that Knowles sees as showing the agency’s strong connection to the community it serves.
Bailey-Boushay House began with a group that met and made plans in a hospital cafeteria, Knowles said. With foundation funding for research, they visited forty cities to survey care. They found that there were no established best practices for people with AIDS at the end of life.
“There were no places for people with AIDS to die with dignity and respect,” Knowles said, and there was no home care agency that would care for people with AIDS.
Bailey-Boushay House’s founders decided to create something new and to find a healthcare provider to assume its management. They planned a partnership with an order of nuns that operates several Seattle and West Coast hospitals. There were, however, points of contention. The order wanted a nun to head the organization; the founders agreed that would be okay if she were qualified. The order wanted a crucifix in every room; the founders conceded that would be all right if patients could take them down if they wanted to. Finally, the sisters did not want condoms in the building. That was where the prospective partnership broke down. The organization’s founders stood firm that condoms must be part of the work of fighting HIV.
With the partnership dissolved and the building nearly completed, some articles in the press predicted that the agency would never open. Seemingly every healthcare provider in town had rejected the project. Then, Virginia Mason agreed to assume management of the facility. In 1992, the doors opened to Bailey-Boushay House—the nation’s first such facility created specifically to care for people with HIV/AIDS at the end of life.
The Power of Art
The facility is licensed as a nursing home, but it looks quite different from the images that phrase typically conjures. When it opened, most nursing homes had double rooms. People with AIDS saw dying as a private process, so all thirty-five Bailey-Boushay rooms are singles. Art displays hang throughout the building—a big part, Knowles said, of avoiding an institutional look. There is even an artist-in-residence: Ross Palmer Beecher, a lauded artist who has work on display at the Seattle Art Museum and at Seahawks Stadium. Beecher, who creates a lot of art using trash or found objects, was tapped to be the agency’s first artist-in-residence. The position was initially planned to rotate each year; instead, the agency put Beecher on its staff. More than twenty years later, she’s still the resident artist. Art at Bailey-Boushay isn’t just about décor; it’s about client well-being, too.
“To me art makes a house a home. Here, it transforms a totally sterile, clinical environment to one of warmth—into a home for our thirty-five residents,” said Stephanie Pietras, Bailey-Boushay’s manager of volunteer services. “The act of creating art is a very important aspect of social engagement for both our clients and residents—and a different way for them to find and use their voice….It is a way for those who have difficulty communicating due to cognitive and speech issues to be heard in a very dramatic way….
“Our clients struggle each day with mental health issues, substance use, housing, socioeconomic challenges, and multiple health issues. To watch a group of clients sit around a table with our artist-in-residence is beautiful. I find creating an amazing form of therapy….Creating art allows our clients to create and watch something come to life.”
Now that HIV is usually a manageable disease, given a timely diagnosis and quality care, the needs have changed, and the organization has evolved. About half of the organization’s inpatient services are still for people who need care for HIV/AIDS-related reasons, including opportunistic infections that are often successfully treated. Others with AIDS are still dying. Some have cancers associated with HIV/AIDS. Some did not get treatment until the disease was too advanced to control.
When beds are available, Bailey-Boushay offers care to others whose needs cannot be met in traditional facilities. For example, patients with Huntington disease or amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) need more care than many places can offer. Besides hospitals, Bailey-Boushay is the facility with the most staff hours per day in the state of Washington—so it can care for many who cannot turn to traditional facilities.
In addition to the inpatient program, Bailey-Boushay offers outpatient services for “people who have struggled throughout their lives and now [also] have HIV,” Knowles said. Their struggles—such as homelessness, substance abuse, mental health issues, or histories of incarceration—can, beyond presenting their own challenges, interfere with the ability to manage HIV.
“Being homeless is hard enough, let alone homeless with HIV….We provide them food and a safe place to be,” Knowles said. The agency meets the immediate need first—by offering meals and mental health care, for instance—and build trust as people continue to come back to seek help. Then, he said, Bailey-Boushay can help people get on the HIV medications they need and, hopefully, get them to an undetectable viral load. They seek to improve both quality and quantity of life, and to address not only client’s homelessness but also the reasons for the homelessness.
One thing that Knowles finds shocking is that many of the agency’s new clients are men in their twenties. In many cases, they were rejected by their families after coming out as teens. Homelessness often led them to sex work and meth use, and many acquired HIV.
“That is a pretty sad story to see that cycle go on,” Knowles said.
A Magical Place
In addition to its staff of 140, Bailey-Boushay House has 120 volunteers. Volunteer recruitment, training, and retention is managed by Pietras, who joined the agency in February 2016. Like Knowles, Pietras traces her passion for fighting HIV to New York in the 1980s; she studied arts in a college just north of New York City.
“I read and heard about so many creative gay men dying from this awful disease, many dying alone,” Pietras said. “Some of my best friends were creative gay men….I felt compelled to learn more and to become involved and it became my goal that no person with AIDS die alone….I became an AIDS Buddy [a trained caring support for a person living with AIDS]. Three of my buddies [clients] died before I had the chance to meet them….
“There is not an illness that has adversely affected so many individuals and families. Stigma, discrimination, and ignorance did not or does not exist with any other pandemic except HIV/AIDS. I continue to be passionate about HIV/AIDS and the myriad of issues that surround it because the disease and those infected still need a voice. A voice to educate those unaware, a voice to advocate for and with HIV/AIDS services and care, a voice to make sure HIV/AIDS is not forgotten about….
“I have been a huge fan of this ‘magical place’ called Bailey-Boushay since first moving to Seattle nine years ago. Bailey-Boushay truly is the reason many of our clients are still alive today….Two full meals (and a bag dinner), a place to shower, to take a safe nap, do laundry, see a nurse daily, go to a support group, get to go on outings with their community—I have seen self-esteem increase, depression lessen, [and] folks do not feel alone.…I have heard at least once a week that Bailey-Boushay House is a safe place to be.”
For more information about Bailey-Boushay House, visit bailey-boushay.org.
Stevie St. John is an assistant editor at Brief Media, a veterinary medical publishing company based in Tulsa, Oklahoma. Her byline has appeared in many LGBT publications.