And the Oscar Does NOT Go to...
...HOLLYWOOD! Why? Basically, I'm mad at them. As I watched the Oscars, full of awkward jokes and slams against the Academy and the film and entertainment industry for discrimination against African-Americans and other minority groups, I thought of another often-ignored sector in society: those who live with chronic illness and disability.
Lack of chronic illness visibility in Hollywood
While this recent conversation about a lack of diversity in the film industry is good and needed, at the same time it's made me think again, with great disappointment and frustration, about how invisible we RA and chronic pain patients still truly are. You don't see comedians talking about us in award show monologues or celebrities protesting on their Facebook pages about how our struggles and stories are unfairly ignored.
RA needs representation in movies
I've had people try to explain this invisibility to me before. "Arthritis isn't sexy," they say. "You know, it's not like cancer." Cancer isn't sexy, of course, but what I think they're getting at is that the arthritis cause just isn't as "cool" or popular as the fight against cancer (and other diseases). You can see this lack of "coolness" in the blatant absence of arthritis/chronic pain/chronic illness in the media and entertainment world.
Every now and then Hollywood does make its token feel-good "cripple film," where the story focuses on a character with a physical (or mental) illness or disability. Usually the sick or disabled person goes through extreme hardship, yet through it all remains positive and ultimately overcomes his or her problems--or at least the film ends on an upbeat note, showing the strength and courage of the afflicted character. Daniel Day-Lewis portraying Christy Brown in the film My Left Foot (1989) immediately comes to mind.
Disability is neglected
My Left Foot is the partly-fictional biography of Irishman Christy Brown, who was born in 1932 with a severe case of cerebral palsy. Having the use and control of only his left foot, the beginning of the film shows Brown as a child, completely helpless, unable to do anything other than lie immobile at home, twitching and making incomprehensible noises, and unable to communicate with his family. By the end of the film, Brown/Lewis has become an accomplished painter and writer while still only using the toes of his left foot. He can also now speak and be mobile, thanks to the help of a speech therapist and wheelchair. Happy ending! A triumphant, feel-good disability story, right? Not surprisingly, My Left Foot won an Oscar for Best Actor, Best Actress, and was nominated for four additional categories.
People like triumph-over-adversity stories. Happy endings. But in real life the "cripple" doesn't end up sitting on a beautiful hill in Ireland with a bottle of champagne, making a toast to his or her newfound soulmate. Well, it hasn't happened to me yet. I'm still waiting.
It's beneficial for Hollywood to keep coming out with films about illness and disability, I'm guessing, because these stories and characters invariably yield successful Oscar results each time they are made. Last year British actor Eddie Redmayne won an Oscar for Best Actor for his portrayal of ALS-suffering physicist Stephen Hawking in the film The Theory of Everything (2014). The film also earned several other Oscar nominations as well as additional awards and accolades.
The rigorous physical contortions and spasms Redmayne put his body through for the film in order to provide an accurate picture of someone with ALS impressed critics and viewers alike. But I suspect that viewers were also won over by the film's predictable romantic sentimentality. I personally thought it was a good film, but I wasn't blown away by it. The main draw, it seems, is that it's not just a film about coping with physical disability, but it's the story of a brilliant famous person who happens to have a disability.
Another film about a chronic, debilitating disease was highlighted at the Oscars last year: Still Alice (2014)--about a 50 year-old woman stricken with early-onset Alzheimer's disease. Played by Julianne Moore, the main character is Alice Howland, an energetic and driven linguistics professor at Columbia University. Used to hard work and success, Alice's family life and professional life start to crumble as the debilitating symptoms of Alzheimer's begin to take over her mind and body.
A fan of Julianne Moore, and curious to see how this degenerative disease would be portrayed on film, I watched the movie with interest. The skeptical and cynical parts of me were on alert with eyes and ears wide open, ready to pounce on any far-fetched or sappy scenes that would wrongly show what it's like to have an "invisible" and chronic illness. I was pleasantly surprised, however.
I'm glad that Still Alice doesn't sugarcoat Alzheimer's nor does it patronize its viewers with a phony feel-good "triumph" at the end. Instead, I think the film does a pretty good job of showing what it's like to live with an unpredictable and debilitating chronic disease: the good and bad days, family love and family fights, hopes and fears, small victories and despair. In a film or a book or any work of art depicting chronic illness, this is what I want to see and experience. I want the truth--or the closest possible truth. There aren't a lot of films or bodies of work that show this, which I think is partly to blame for the many misconceptions that still exist about RA and other similar diseases.
RA awareness is crtiical
The only mainstream films that I can think of off the top of my head that actually show characters with arthritis (RA in particular) and chronic pain are: Words and Pictures (2013) and Cake (2014). There should be a lot more, in my opinion, especially when you consider that arthritis is the number one cause of disability in the United States, and that chronic pain affects staggering numbers of people.
If so many lives are touched by arthritis and chronic pain, why is there such a lack of exposure and awareness in the media? My theory is that there is still a lot of stigma and secrecy surrounding arthritis and chronic pain. The difficulty of RA being an "invisible illness" probably also plays a part in this. If most people in the world still don't realize how serious and life-altering (even life-threatening) arthritis can be, perhaps it's deemed not important or "exciting" enough to bother with. I'm not sure, but I certainly think it's worth investigating more. We RA patients and chronic pain sufferers need our voices to be heard!
We also need to be given the opportunity to fill the Hollywood film roles ourselves. To be the people you see on TV talking about arthritis medications and treatments, instead of some actor who doesn't have a clue what it's like to live with RA and chronic pain. We need to be in the movies, on TV, on the radio, in the papers and magazines, and, well, everywhere. We need to be given a chance to really speak and act in order to help bring the truth about chronic illness to the rest of the world.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?