Fabu Carter: The Poetry of Alzheimer’s Disease Outreach

Fabu Carter | Alzheimer's disease outreach

Fabu Carter, MA, outreach specialist, Geriatrics and Gerontology, at the UW South Madison Partnership office
“Poetry has been the best aspect of my life because it allows me to interact with people of any age, any background, any race,” says Fabu Carter, MA, outreach specialist, Geriatrics and Gerontology and the Wisconsin Alzheimer's Disease Research Center. 
Viewing poetry as a potent healing tool for people of all walks of life, Ms. Carter has long been working within Madison community nonprofit organizations and schools to empower individuals. For over two decades she has nurtured the creativity of Madison’s schoolchildren, visiting schools to encourage youth to write. Ms. Carter, who holds two master’s degrees in African language and literature and Afro-American studies, respectively, also has raised childrens’ awareness about African American history. She served as Poet Laureate of Madison from 2008 to 2012, having been appointed to the honorary position by former Mayor David Cieslewicz. In a 2011 interview for the Wisconsin State Journal, Ms. Carter said that her dedication to community outreach with children was a key reason for her appointment. “The idea of a city poet laureate is that you would represent poetry for the city of Madison. I [was] asked by the mayor's office to write poems for specific city events,” she said.
In January, 2015, Ms. Carter joined the Wisconsin Alzheimer's Disease Research Center to serve a different generation: African American elders. “As an outreach specialist for the Wisconsin Alzheimer’s Disease Research Center, I recruit African American research study participants and work on retaining the people we recruit into our program,” she says. The effort has been extraordinary and full of unforeseen surprises. 
The impact of Alzheimer’s disease on the African American community is profound. According to the Alzheimer’s Association, African Americans face a twofold higher risk of developing late-onset disease than whites and are less likely to be diagnosed at an early stage of disease, resulting in less time for treatment and planning. Longitudinal studies at UW-Madison are aimed at identifying risk factors and genetic underpinnings of Alzheimer’s disease in African American populations, helping to ensure that treatment and prevention strategies work for everyone. The ultimate goal is to alleviate the suffering caused by this disease. 
Recruitment of study subjects for biomedical research is built on a foundation of trust and respect, and Ms. Carter is acutely aware of how past interactions with the medical system can affect the willingness of African American elders to become involved. “I work with African Americans who are age 45 and above…older members from this generation lived through the civil rights era. Some people in this generation attended segregated hospitals. Some had medical procedures - including sterilizations - performed without their permission. For some of them, the hospital is not a place where they feel safe,” says Ms. Carter.     
“I consider it an honor to work with African American elders,” continues Ms. Carter. Building relationships with elders in the community has allowed her to bear witness to a treasure of living memory about the African American experience—including stories from elders whose families have lived in Wisconsin for seven generations. “They are such an accomplished group of people who often feel overlooked. It’s always important for them to take care of themselves, to preserve their memories. I’m able to learn about what they remember, about their contributions to society,” says Ms. Carter. 
Her interest in using poetry as a means of connecting with individuals living with Alzheimer’s disease started when she became involved with the Alzheimer’s Poetry Project, a program founded in 2004 in New Mexico by poet Gary Glazner. The program offers workshops for people with memory loss that begins with a call-and-response performance using lines of classic poetry as a stimulus to ignite memory. “When this generation was engaged in schooling, part of their introduction to literature involved memorizing poems of writers like Henry Wadsworth Longfellow and Langson Hughes. I have one lady who loves Edger Allen Poe,” says Ms. Carter. Workshop participants then collaboratively write a new poem. “I come up with a theme, I’ll read a poem that connects with the theme, we talk about poems on that theme, and then we compose a poem together based on their sentences.”
Creating connections using innovative approaches like this results in meaningful relationships. As a liaison between study subjects and the medical community, Ms. Carter holds the needs of study participants as a sacred trust. “If they say, ‘I’m afraid,' or ‘I don’t understand,' sometimes that means that I’ll be there with them for the whole five to six hours of the research visit,” says Ms. Carter.
She also offers insight to medical professionals about ways to build relationships with African American elders. As an expert in language use, she is quick to notice the impact of communication style. “I never address an African American elder by their first name when we’re introduced—it’s always ‘Mr,' 'Mrs,' or ‘Ms,’ because historically, African Americans of this generation were not afforded the dignity of using these titles earlier in their lives. To address them by their first name is disrespectful…if I do, they aren’t going to be as open to the things that I ask or suggest,” explains Ms. Carter. She often finds herself translating health care terminology that presents a barrier for understanding, such as acronyms or the term “provider” instead of “doctor.”
Through keen insight, Ms. Carter champions meaningful connection. “The medical community—they are working so hard to cure and assist people, but…if someone is afraid, they’re not going to come in. If they don’t understand, they’re not going to take the prescription you give them. If they walk away feeling disrespected, they’re not coming back,” she says. 
Continual dedication to the African American community is at the heart of her work, aligning with UW-Madison’s approach to reducing the burden of Alzheimer’s disease in the population. This approach has resulted in the opening of the UW South Madison Partnership last year, a facility led by Everett Mitchell, director, Community Relations, UW-Madison, that serves the walking neighborhood near South Park Street and that is a hub for support groups and services. “It’s wonderful to be right there, it’s so easy for people to get to us,” says Ms. Carter. Non-invasive research procedures such as memory testing can be performed at the center rather than in a hospital. The location and accessiblity of the UW South Madison Partnership offices has been a key component of the Wisconsin Alzheimer's Disease Reseach Center's community outreach efforts.  
The south Madison neighborhood is also home to events including the Solomon Carter Fuller Memory Screening Day. This annual event presented by the Wisconsin Alzheimer's Disease Research Center, which next occurs on February 19, 2016, offers public lectures by an Alzheimer’s disease expert focusing on the African American community, paired with panel discussions, workshops, and free, confidential memory screenings. The invited speaker also presents grand rounds for the Department of Neurology. Members of the Alzheimer's Disease Research Center view the Solomon Fuller Carter event as a key way to bridge the campus and the community. The namesake of the event, Dr. Fuller Carter (1872-1953), was a pioneering African American psychiatrist who played a central role in the development of the field of psychology in the early 1900s. While he spent much of his career practicing in the Boston area, Dr. Fuller Carter also traveled to Munich, Germany and worked closely with Dr. Alois Alzheimer, whose research breakthroughs led to the disease being named after him. 
This year’s event will feature Consuelo Wilkins, MD, MS, associate professor, Vanderbilt University. “When [current or potential study subjects] meet researchers like Dr. Consuelo Wilkins, there’s less trepidation and fear about what the research might be doing, where the information might be going. It’s a way of establishing connections with the African American community about research,” says Ms. Carter.
Throughout all of her outreach work and event planning, Ms. Carter continues to write poetry. At an event next month called "Love Released: Poetry and Fiction for Valentine's Day," Ms. Carter will join fiction writers Catrina Sparkman and Sherry Lucille to read selections on the theme of love from their works. The event will occur on February 13, 2016 at 1:00 pm in room 302 of the Madison Central Library. Ms. Carter will read from Love Poems by Fabu. It is the most recent among her books of poetry, which include Poems, Dreams and RosesIn Our Own Tongues, and African-American Life in Haiku: Journey to the Midwest, which won a Wisconsin Library Award. A new poetry manuscript, Mary Lou Williams in Poetry, will be published in 2016. 
Ms. Carter’s approach to writing has been steeped in her life experiences ever since early childhood, when she turned to poetry as a way of processing the chaotic 1960s when her mother was marching with Reverend Dr. Martin Luther King Jr. and her father was fighting in Vietnam. Now, she finds that her work with African American elders provides a source of inspiration for new poems, such as the one she shares below. “This is meaningful work,” says Ms. Carter.   
For Beloved Elders With Memory Loss
by Fabu
Some call you seniors 
I call you wise elders 
Living long and learning much.
You should be honored 
Your grey hair a symbol of victory and authority in life.
When your memory hides or flees
And every face seem strange 
Let there be other signs of love.
Gentle touch, kind voice 
The spirit that welcomes you just as you are.
Reassure yourselves 
That you know how love feels 
For it will chase the fear of forgetting away.