Front Matter

Disclosure of Competing Interests

Meet This Book’s Editors: Pat Corrigan and Sonya Ballentine

SONYA: In 2012, I finally believed I was in some control of both my drug addictions and mental illness and ready to go beyond weekly groups and counseling sessions to get back into the world. I saw this flyer about a program that was looking for African Americans with lived experience of mental illness to develop a health program for people who were homeless. I signed up thinking this would be an easy first transition because it would be one and done, and then on to something else. No need for long commitment. I made the second meeting, where I met the team of people with lived experience—many I knew from the neighborhood—and these university scientists. The scientists were a bit of a surprise. Sue was very patient for a researcher, more like a liberal white lady than a number cruncher. Pat was laid back and over-accommodating; I thought he should have been more in control. “Sometimes you just need to cut ‘Mary’ off.” But frankly, I didn’t think it would matter. We’d sit around the table a few times talking about health and then the researchers would be elsewhere on something else.

My greatest surprise was that this was serious, something was actually going to get done, not just pretending. We developed a 130-page treatment manual, and then we hired three peer navigators to use the manual to help African Americans with SMI. Honestly, that freaked me out.

PAT: The project with Sonya was the first I led on health and wellness concerns of people with SMI. I had written the proposal months earlier, was funded by NIH, had my team in place, and was ready to go. After all, I was an expert in SMI and thought the research plan would be easy to throw down on paper. But also, to be honest, I wondered whether working with a CBPR team—African Americans with mental illness who had been homeless—would be helpful or actually a hindrance to my wisdom.

It was a lot of work; first, we had to come to know and trust each other. I remember an icebreaker at an early meeting: “Turn to the person on your left and tell them one fun thing about you.” I greeted Lee to my left with a smile and fun story about my golden retriever, Cleo. Flat reaction; almost no response. “So what does that have to do with me being here?” What Sonya says about going through the motions resonates for me. Was this something that was really going to lead to a change or just hollow talk? Our proposal included CBPR-led “windshield tours” within the first 3 months of start-up. We split up researchers and people with lived experience into small groups to walk and learn from the community. I ended up with Lee, who proudly walked me around his neighborhood introducing me to people he talked with every day. He introduced me to friends who had cocaine addiction and still called the streets home. He walked me into the north end of Lincoln Park and showed me where people live. One good spot was a large bush where people could not be seen by passing drivers on Lake Shore Drive, nor be rushed by fellow angry travelers. He said that when staying in the park “it’s best to put personal belongings up a tree and make sure they are wrapped in garbage bags. That way they won’t get wet.” That single afternoon stroll advanced my knowledge about project challenges exponentially.

SONYA: I remember the windshield tour too. I was the lead of a small group that included Dana [the research project director] and Curlee. I began to understand how this research partnership stuff was really supposed to go. I was in my comfort zone. I was the professor teaching Dana what it meant to be where I come from. I got to introduce them to people I know on the street and hand out gift cards for their participation.

Things have changed immensely since then. Pat first offered me a part-time job on a PCORI [Patient-Centered Outcomes Research Institute] grant and then a position as project manager of an NIMHD [National Institute on Minority Health and Health Disparities] grant on peer navigators for the diet and exercise needs of African Americans with SMI. Moving to part-time, and then full-time, work was frightening, a huge challenge given my past few years, but also a great success for me. I had been on the streets for more than 5 years, overwhelmed with my illnesses, and never thought I could do this. But now I am a university employee and actually run a CBPR team made up of investigators and people with lived experience. I’ve been there. I know what it means when figuring out the needs of people with mental illness. We are now 4 years into a manualized diet and exercise program, with a goal of recruiting 270 people with SMI into the program.

Just last week, I was doing my monthly calls, getting process information about research participant activity during the preceding 4 weeks. I was talking to “Ken” on the phone, asking him the standard questions. “Ken, in the past month, has your drug use changed at all?” He responded like most respondents: “No.” “Ken! You’re on 45th and Halsted and I can hear you making a heroin deal. Don’t give me that.” I don’t think Pat would have gotten that kind of info.

I should not understate the joy I get in this job. I’m making a difference in the community, people who are disadvantaged in terms of health and health services. And it’s my community. Not some abstract textbook notion of “disadvantaged population.” These are the streets I grew up on, that I still walk through. These are people I know, their smiles and frowns and stories. These are people I sit next to at church on Sunday or stand in line with at the local store. I am privileged and honored to be working for their well-being.

PAT: I struggle here to put my real thoughts into words on a page. I have learned and continue to learn from Sonya each day. Health challenges and disparities are so much more than numbers in a book. They are meaningful relationships that lead to enduring change. Sonya is my muse.

Who This Book Is For

Outline and Organization