As I went through the journey of writing and publishing my book this year, I attempted to follow the traditional path. An author writes and completes the book, and then sets out to "query" literary agents for possible representation and publication. Traditional publishing is a very competitive industry, and most authors are rejected numerous times before landing an agent, and many experience rejection for their entire careers.
I met with my share of rejection letters, and many agents gave me the same explanation. "We love the book, but we don't feel that it is going to have a large enough audience to result in big sales."
This is the bottom line in publishing, and in most areas of media. Movie scripts and books are not going to succeed without the potential for huge profits, and the topics of MS and disability in general are not viewed as "marketable" currently. This fact doesn't sit well with me, and I have become determined to get the word out to the entertainment industry that disabled characters in film, TV, and books are underrepresented.
Can you recall the last time you went to a popular movie and saw a disabled main character? When is the last time you picked up a New York Times Best Seller that starred characters with disabilities? These characters pop up occasionally, but it is definitely a rare occurrence. Unfortunately, I believe that audiences don't want to see disabled characters, possibly because it is uncomfortable to cope with. The selection of popular, mainstream books and movies starring characters with MS is even more narrow. MS just does not seem to make an appearance in mainstream media, unless it is a celebrity memoir of some kind. I believe that we as MS patients can make an impact on this issue, by being very vocal about our objection to being excluded.
After all, we have incredible stories to tell. What is more interesting than the tale of an individual who overcomes incredible adversity? What story is more compelling than one of triumph over tragedy? In my six years with MS, I can recall dozens of incredible stories of true warriors, regular human beings who cope with superhuman challenges. Parents who drag themselves out of bed on a daily basis, just to care for little ones who depend on them, professionals who continue to strive for excellence despite their constant pain, and parents who struggle with their children's diagnosis of MS.
As consumers of mainstream media, (books, movies, TV) we should be demanding to see more characters struggling with and overcoming disabilities. The few stories that do seem to sneak into the public's eye are often met with amazing responses, as we often see in "viral" videos online. These compelling stories of hope and strength belong in the forefront of public media, and until we demand it, nothing will change. Wouldn't you like to see more characters you can relate to next time you head out to the movie theater?
Obviously, as MS patients, we have bigger issues to cope with than this one. However, I believe that increasing awareness includes advocating for better representation in media. The spread of information in our society flows most rapidly with mass media, and this is a great place to focus attention on our illness. Still considered rare, with an incidence of 1 in 1000 in the US, MS is still very poorly understood by most people. Increasing the availability of movies, TV, and books related to MS and disability in general would be a great place to start educating the public.