And the Winner is: Raising Awareness via the Oldest Profession

Hold on now, I mean the other oldest profession: Show business!

Since I’m writing this in March—and March is raising MS awareness month—I’ve been digging around for some outstanding examples of efforts show people have made to bring attention to neurological diseases by highly visible means.

I didn’t have to dig too far back in the past to find some well-publicized and heralded efforts of the highest visibility. In February, the Motion Picture Academy of Arts and Sciences nominated two films for best picture which explore the challenges of their prospective protagonists that struggle with neurological diseases: STILL ALICE, about a woman in the early stages of Alzheimer’s for which Julianne Moore won a best actress Oscar, and THE THEORY OF EVERYTHING about the life of Stephen Hawking, for which Eddie Redmayne won the best actor Oscar playing the real-life 74-year-old theoretical physicist who has lived with Amyotrophic Lateral Sclerosis (ALS) since 1963.

That’s two films in one year and both won highest honors for leading portrayals of people with progressive, incurable neurological conditions. This begs a couple of questions: What would motivate an ambitious film actor to inhabit a body racked with a disease that scares so many of us with its unpredictability and dire outcome?

“This is something I didn’t have a lot of information about so it was fascinating to explore, to talk to the women that I met, the clinicians and researchers and the people at the Alzheimer’s Association,” Julianne Moore remarked about playing the role of a Harvard literature professor diagnosed with early-stage Alzheimer’s. “It’s a big issue and it’s obviously increasing as people are living longer.”1  

Most of us who live with chronic disease wish our able-bodied brethren would try to imagine what it must be like to be us, to step into our skin and live with our disease for a day. Actors do just that when they assemble a fictional character for a movie or play. Only they stay in that skin for months at a time.

”Trying to keep track of exactly where she was also was difficult because of the subtlety in the decline. They’re really small things that distinguish each stage,” Moore said about shooting scenes out of sequence while playing the eponymous character in the 2014 movie STILL ALICE. “Her clothes start to change. The colors change. She doesn’t seem to be selecting things the same way. She wants [to wear] something because it’s soft, not because it looks good. The lack of control of body functions, all the different things that happen: when do they happen? When does language go? How do you demonstrate that a decline has started without going overboard? I tried to be as accurate and precise as possible with the changes,” explained Moore. (from same source material as above.)

Creative challenge and ambition are undoubtedly what is behind an actor’s motivation to inhabit the world of a disabled character. A more cynical version of this attitude is the prevailing snark that if you land the role of a disabled character, you’ll be guaranteed an Oscar nomination at the very least. Sixteen percent of all the best actor and actress awards have been portrayals of disability or mental illness. Think Daniel-Day Lewis portraying Christy Brown, a real-life Irish writer who had cerebral palsy in MY LEFT FOOT (1989), and Dustin Hoffman playing autistic dude/brother of Tom Cruise in RAIN MAN (1988).2

But the outcomes involve much more than industry accolades; many highly-paid stars give their time to charity fund-raisers, and they often stay in touch with the disabled people they befriended during the research phase of their movie roles, proof that empathy and advocacy can be a by-product of the dramatic arts. At the very least, in its most fleeting variation, it may be a kind of Stockholm Syndrome, a simpatico with the captor that develops during isolation and brain-washing (the research phase of an actor’s character development where s/he learns everything about the disease), a kind of indoctrination for the sake of survival while practicing one’s art. Wouldn’t it be great if our friends, employers, loved ones, medical professionals, and those infamous blue parking space Nazis would use such skill and empathy when interacting with us?

One of the more gratifying outcomes of actors portraying disabled characters is a growing advocacy movement to hire disabled actors to portray disabled characters. The most obvious example of an actor having lived both sides of the issue is Christopher Reeve of SUPERMAN fame, who became a quadriplegic after a riding accident severed his cervical spine at C-1 and C-2 in 1995. After the accident, not only did he create a foundation for spinal cord injury research, he produced movies in which he played an independent and capable disabled man living alone. Reeve died of sepsis in 2004.

About a year ago I wrote an article about disability in the movies and a guy with MS responded that he doesn’t watch movies because they aren’t real life, suggesting that the movies cannot possibly be any kind of reflection of the life we experience. I would want anyone with a similar notion to dig a little deeper, watch a story or two, and consider the possibility that if a for-profit motion picture production company sinks millions of dollars into the riskiest kind of story idea, it must have some inkling as to what might engage the public, what they might sit still for. Film, in my opinion, is a direct reflection of life in our time; heightened, reductive and formalized, yes. But every responsible business has a marketing guru, and it doesn’t take a genius to see what our burgeoning chronically ill and aging population and its caregivers look like. A good writer and a good actor take care of what they feel and act like.

I’m encouraged by the accolades two movies received this year in their portrayals of people with neurological diseases. A lot of people sat in darkened theaters and watched their own lives as caregivers and disabled people unfold before them. So too the Motion Picture Academy of Arts and Sciences voting members.

Did you see STILL ALICE and THE THEORY OF EVERYTHING? What did you think about the portrayals? Do you think only disabled people should play disabled characters? I’d love to hear what you think about that!

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