Understanding and Respecting Disabilities

I was in fourth grade when I first learned about Crazy Mary. I was cutting out circles for an art project that my class was working on with our assigned big buddies from the seventh grade class. My buddy leaned across the table and whispered to her friend, “I saw Crazy Mary yesterday at the Penn Ave. bus stop.” I didn’t know who Crazy Mary was nor was I confident enough to ask my intimidating older buddy to elaborate. Yet, I remember the look of intrigue that spread across her friend’s face as if she had just been informed of a Sasquatch sighting in the neighborhood.

I later learned where Mary lived. On 51st Street and Penn in Minneapolis stands the most colorful rainbow house I have ever seen. The glass panels of the windows have been punched out and replaced by wooden planks painted with multicolor stars, rectangles, and circles. The roof’s red and white striped shingles resemble an American flag. Visually, the house seems like a mix of a Candyland gingerbread house and a pop art comic book.

Crazy Mary became just as much of a local spectacle as her house was. I saw her for the first time when I was in sixth grade. Driving past the Penn Ave. bus stop, I caught a glimpse of her in a black leather jacket and black dress down to her ankles. Her bleached white hair hung down past her shoulders and she was pushing an old, empty wheelchair. My classmates and I didn’t see her often, but when we did we would share excited reports of our sightings and make speculations about where she was going and what she was doing. We heard stories that she would ride the Minneapolis city buses with no destination, talking aloud to no one in particular. Some rumors emerged that she had gotten hit by the bus so the city allowed her to ride for free.

As much as we gossiped about Crazy Mary and developed our own unverified theories about her life, I had never taken the time to investigate her real story. My dad later told me that “Crazy Mary’s” real name is actually Mari Newman. She’s a local artist who, despite her struggles with mental illness and financial insecurity, works hard to continue producing her art. Unfortunately, Mari’s story was proliferated by gossipy middle schoolers and her disability was sensationalized for public entertainment. Ultimately, Mari’s voice and story were drowned out by people who preferred to typify her as a haunting, elusive Minneapolis legend rather than acknowledge her humanity.

Recently, on March 28, I met James Rutenbeck, a filmmaker whose projects offer a platform for people like Mari to have their voice heard. As a guest speaker for my Health Journalism class, he spoke about his work with people whose stories either go untold or are embellished and exploited for the sake of a “good story.” He has worked with everyone from immigrant families and individuals with disabilities to evangelists and unemployed coal miners.

We discussed his 2009 film Scenes from a Parish, a four-year documentary that profiles the St. Patrick Parish in the small textile town of Lawrence, Mass. I was particularly interested in his focus on local parishioner Bobby McCord, a young man whose mental and verbal impairments have made it challenging for Bobby and his family to relate to their local community. Bobby’s sister Sarah explains that once while grocery shopping with Bobby, a stranger approached her and asked her if she knew a strange man was following her. “Yes, he’s my brother,” she replied.

Those who don’t impolitely gawk will often ignore Bobby with a sense of an uncomfortable avoidance. Despite his friendly demeanor and love of talking to others, the majority of people who encounter him struggle to understand his challenged speech and will thus avoid the awkward interaction altogether. In the film world, filmmakers will normally compensate for these comprehension difficulties by adding subtitles or voice-overs to make their subject’s speech more accessible to a general audience. The subject may be recorded in short clips that are interrupted by a loved one summarizing what was just said. Rutenbeck, however, boldly challenged these conventions: During a scene filmed on Bobby’s birthday, he gives Bobby more than one full minute of uninterrupted airtime to tell the audience, in his own words, about his special day.

Simply viewing the moment on-screen was a unique experience in itself. After the first 10 seconds or so, you fully expect Rutenbeck to shift the focus from Bobby to a family member who will explain what he just said … but he doesn’t. The lens maintains its unwavering focus on Bobby. It can feel uncomfortable at some points, like the feeling of holding lingering eye contact with someone just beyond the comfortable amount of time. But Rutenbeck remains on Bobby and doesn’t let you look away.

Suddenly you feel a shift. Instead of straining to understand each word, you redirect your attention to the smile that lights up Bobby’s face. You read his expressive body language and hand gestures, and you begin to understand him. No subtitles, no voice-overs, no explanations. That feeling of being in genuine conversation with Bobby in its raw, unedited form is precisely the experience that Rutenbeck hopes to capture and deliver to his audience. He understands that there can be an initial awkwardness in relating to Bobby, but he challenges us to wrestle with it. And the experience is transformative: eventually, you forget the awkwardness and can’t help but feel captivated by his spirit, expressions, and lively humanity.

Rutenbeck highlighted the challenge of creating work that is accessible to viewers but nevertheless maintains the integrity and rawness of the work’s challenging themes. When I asked how he finds the appropriate balance between the approachability and authenticity of the piece, he explains that he tends to pursue the latter. As an artist trying to reach a general audience with themes that can be unfamiliar, he wants to avoid making the piece too watered-down and comfortable. So what is his ultimate goal? “To preserve the magic and mystery of his dynamic characters,” Rutenbeck explains. To approach his work with an “openness to the human condition in all its complexity and portray this experience on screen.”

After my conversation with Rutenbeck, I couldn’t help but think of Mari. I had spent years misunderstanding her and her story because I had never really taken the time to seek out the information. Understanding disabilities, mental disorders, and even physical impairments may seem uncomfortable at first. Simply asking questions and opening our hearts to their answers is an easy first step in overcoming our judgments and, as Rutenbeck says, embracing the beauty and complexity of the human condition.

Featured Graphic by Nicole Chan / Graphics Editor