"AIDS was my destiny," said Ida Byther-Smith, founder of Jo-Ray House, a living space for men with HIV located in Chicago's Roseland neighborhood, "but life was my choice."
Byther-Smith found out that she was infected with HIV the same day—Nov. 7, 1991—that basketball player Magic Johnson announced his own infection in a nationally-televised press conference. The result of a routine test Byther-Smith needed for a job, the infection came as a shock. She left the doctor's office "running," she said, after telling the doctor he was a liar.
Throughout the 1990s Byther-Smith struggled with how to cope with her infection. When her husband—who had infected her and left her—showed up at her door in 1996 after being robbed, she told him, "You can have a bedroom." He lived under her care until his death in 1999.
The arc of her relationship with her husband would presage the work that has consumed her for much of the past decade. After a near-death experience on Christmas Day in 2000—when she was rushed to the hospital with a high viral load and virtually no T-cells—she resolved to help other members of her south side community who were struggling with the disease.
Taking from her savings and her 401k—she had been, at various points, a Greyhound bus driver and a dialysis technician—Byther-Smith opened Jo-Ray House in 2004. The name of the house is an amalgamation of her mother's name, Josephine, and her brother's, Ray Paul. Both died of heart attacks at a young age.
Byther-Smith said that the idea of the house came to her after talking to a man who had contracted HIV after he was raped in prison. When he told his grandmother, who he lived with after his release, she removed "everything he had touched" from the house and threw it away.
Byther-Smith was appalled at the man's experience: "You're afraid to touch your own grandchild." She opened Jo-Ray House as a space of support for Black men struggling with an array of challenges: the fact itself of living with HIV/AIDS, as well as the social stigma attached to the experience of being positive.
Byther-Smith has experienced a good deal of the stigma herself, she said, though not from her family, who have been largely accepting and supportive. When she told her family about her infection, she said, she was told by an uncle, "I don't love you know more and I don't love you no less."
Still, prejudice is pervasive; Byther-Smith has struggled with having a disease that was initially identified closely with white gay men. She has had trouble persuading others that her own experience with the virus is as legitimate as anybody else's. "You don't have a story," she said she was told by acquaintances, "You were just infected by your husband."
"HIV [ has ] no different levels," she told them. "HIV is HIV."
She said that the difficulty in openly discussing the virus—including the ways that it can be contracted—is troublesome especially in light of high infection rates among African-American people, and particularly youth. That parents tell their children, for instance, "I was a virgin till I was married," said Byther-Smith, is "a crock of shit."
She said that when she counsels youth, she tells them, "I did the same thing you're doing, and it didn't get me anyplace." She also worries about teenage carelessness, even vindictiveness, about spreading the disease.
"Somebody gave it to me"—goes the mentality that worries Byther-Smith—"I'm going to give it to them." She said that she has experienced a particular emotional toll around the matter of confidentiality, and the occasional knowledge that teenagers know themselves to be positive but continue to practice unsafe sex.
She said, too, that in her dual role as both "a consumer and a caregiver"—that is, as somebody who is positive for HIV as well as somebody who provides services for people in the same situation—she has had an opportunity to engage with the tricky politics of HIV, both within and without specifically AIDS-oriented organizations.
In terms of Jo-Ray house, she said, she has had a stream of challenges with the city in terms of zoning and code restrictions, and challenges with the bank in terms of her mortgage. "If you tell the truth, I think you're a threat," she said.
Though the house has been in the same location, and financially stable, since 2004, she has "just now" started having problems with the bank. She said that she fears that in current economic conditions, the bank may be overconcerned about the ability of a black woman to keep up on her payments.
Jo-Ray House relies both on Byther-Smith's savings and on private fundraising. It is not, Byther-Smith said, a transitional house, but rather one where men can stay for as long as they need to feel ready to leave. The average stay is 90 days, she said, though some stay for as long as five months.
Men who live in the house are responsible for its day-to-day operation, she said, creating a space that feels closer to home than a transitional house: occupants clean the kitchen and their rooms, for instance. Though it is occasionally a place where people "dump" family members who are HIV-positive, Byther-Smith feels that the overall experience of Jo-Ray House is one that empowers people living with HIV to better deal with a largely phobic world.
"I couldn't tell my status until I met you," she said one of Jo-Ray's inhabitants told her.
The feeling, she added, is mutual. The men who live in Jo-Ray House, she said, "don't know how much I've learned from them."
For more information on Jo-Ray House, visit www.jorayhouse.com .
