Can’t hold us back
Ryan Lewis’ mother, Julie, who has lived with HIV for three decades, says her own battle has helped inspire the 30/30 Project, which aims to bring health care to impoverished places around the world
Julie Lewis didn’t expect to be baby-sitting her 4-month-old grandson last week.
The former Spokane resident, who now lives in Seattle, never expected to live even long enough to see her three children graduate from high school or get married, let alone to meet her grandchildren. But she has.
Lewis was infected with HIV, the virus that causes AIDS, 30 years ago, after complications from the birth of her first child resulted in a blood transfusion at a West Side hospital. This was in 1984, the year scientists discovered that AIDS was caused by a virus, and a year before Washington required that all donated blood be tested for HIV.
The blood she received that day was tainted. But it would be six years and two more babies before she learned she’d been infected with a disease considered at the time to be a death sentence.
For her, however, it wasn’t. And to mark her 30th year of survival, Lewis and her family – including husband, Scott; daughters Teresa and Laura; and son Ryan, of the Grammy-winning hip-hop duo Macklemore and Ryan Lewis – are launching a fundraising campaign to bring health care to impoverished places around the world.
A week ago, the Lewis family announced the 30/30 Project to aid the Seattle-based nonprofit Construction for Change in building health facilities where they’re needed most.
Phase 1, with a fundraising goal of $100,000, would build a clinic in the Neno District of Malawi, an area that is about a two-hour drive from the nearest medical facility. The new clinic will serve 20,000 people in a country in which 1 in 10 adults is HIV positive. Construction for Change will build the building, and the nonprofit Partners in Health will run the facility in conjunction with Malawi’s Ministry of Health.
“The area we’re going to, really there’s just no health care at all,” Julie Lewis said by phone last week. “So we’re anticipating it will transform that region for many reasons, not just HIV/AIDS.”
In three days, the 30/30 Project’s crowd-funding site on Indiegogo.com had raised nearly $70,000, kicked off by donations from Ryan Lewis and Macklemore. If donations exceed that initial goal, Construction for Change will go on to the next project, and the next.
“We’re so excited,” Lewis said. “In reality we have five phases that are set to go, so we’re very excited to be halfway to the first goal, but we’d like to be able to build a couple of those we have on that list. People have been very generous.”
The idea came to her through her work with Construction for Change, where she’s volunteered for three years reviewing project applications. Construction for Change builds facilities in developing countries, and then established agencies take over the buildings to run them. The facilities are built to American standards and are expected to last 30 years.
As the 30th anniversary of her infection approached, she’s simply put the 30s together, and the 30/30 Project was born.
“My family had already told me they wanted to so do something,” she said. “And it’s awkward celebrating survival because of all the people who didn’t survive. You want to do something that leaves a legacy for all of the people you knew and is a positive act of goodwill in some way.”
Lewis is grateful she’s had access to doctors and medicine, and a car to get her to her appointments. But, “it feels like being grateful isn’t enough at this point because I read all these applications from organizations in other countries that are doing such good work, but they need buildings to be more effective and to give people access.”
Lewis remembers the early days of her diagnosis in 1990. She and her husband were packing up a U-Haul to move from the West Side to Spokane when she got the call to go in for an AIDS test.
She admits they moved to Spokane in a bit of a daze, and she and her husband decided to keep her diagnosis quiet – even from the children, who were 6, 4 and 2. Amazingly, no one else in the family – not Scott nor their two children born after her infection – had contracted HIV.
“We didn’t know Spokane very well,” she said. “We didn’t know people, and we just thought it might not be the easiest relationship-builder to come in and the first thing people find out about us is that I have AIDS.”
They were leery about the discrimination and stigma associated with HIV/AIDS.
“We had three little kids and we felt that as little kids they didn’t deserve that,” Lewis said. “We wanted their lives to be innocent and carefree for as long as possible.”
When they did decide to go public four years later, they told the children first. Or rather Scott Lewis did. He took each to Manito Park and broke the news. Ryan, the youngest, was 6 at the time. Lewis said she knew she wouldn’t be able to tell them herself. “I knew I would break down and they would be really upset,” she said. “He’s more calm and reserved and much more able to talk about difficult things.”
A high school teacher by training, Lewis opted to get involved in the best way she knew how: as an educator. She spoke to her contacts at the Spokane AIDS Network and began volunteering with its speakers bureau.
“I felt like it was something I had a passion for, especially speaking in the schools,” she said. “I jumped right into that right after we told the kids.”
She ended up running the speakers bureau for the family’s last two years in town – they moved back to the West Side in December 2003 when Scott Lewis took a new job with Young Life. As a paid staff member with the HIV/AIDS and blood-borne pathogens department with the Spokane County Regional Health District, she spoke in jails, drug rehab centers, youth centers, and lots of classrooms.
Still, despite the education, Lewis said she still felt subtle discrimination. She was surprised a couple of times when health care workers seemed afraid of her. One nurse asked her to swab her own throat.
“Most people were great,” she said. “The way I felt discriminated against was in what people assumed I could and couldn’t do. So once I came out, it was hard to get a job, because people thought I was going to be sick all the time.”
The work on the 30/30 Project has been a family affair. Ryan Lewis shot the video that’s featured on the Indiegogo site, and it features interviews with his sisters and Ben “Macklemore” Haggerty. Lewis also said the entire Macklemore team has gotten behind the project. “That’s been a huge gift for us,” she said.
“I think they feel the same way. They’ve had a great year, and they’re very grateful, but with that gratefulness there’s also a desire to give back and to do something good for other people with that good fortune.”
Her ultimate goal is to build as many facilities as possible.
“I’m such a one foot after another person,” she said, with a laugh. “I think HIV made me like this. I have dreams, but I take it one thing at a time. That’s how I survived 30 years.”