“I don’t understand why they need to make a movie that highlights my disease.” I was once very wary of films and television series that had characters with cystic fibrosis. Medical dramas can often be dark and embellished to captivate the audience. As much as I personally enjoy watching such dramas, it also put a bitter taste in my mouth because what was seen on the screen gave misconstrued ideas to the public. The more drama and hopelessness seen with fictional cystic fibrosis cases in film, the more viewership grows.
I noticed over time that cystic fibrosis was slowly starting to be seen more in film, as it was something audience members could either grow awareness of or pity.
My mentor who had cystic fibrosis once said, “Filmmakers can make movies about whatever they want to. Whether they decide to portray cystic fibrosis correctly or incorrectly, people will look to the cystic fibrosis community with curious eyes. It is our job to inform and educate the public.”
My perspective of cystic fibrosis in media began to change as I, too, became a filmmaker. I began to critically look at films with two lenses: how well was the film made and how does this film represent the cystic fibrosis community?
I began reviewing television series where I had grown up seeing fictional cases of cystic fibrosis. The episodes would be dramatic and a bit rushed, but that is how most medical shows are. Most storylines involved a patient with an incurable bacterial infection in the lungs or who needed a lung transplant. It was one or the other. The first television series that caught my eye was Red Band Society. Cystic fibrosis warrior, Claire Wineland, gave weekly reviews on her YouTube channel. I agree with her aspect of the television series. It was an entertaining series that showcased a variety of things that could occur in the hospital, loosely speaking. Obviously, it’s media, and not everything will be accurate — it is for entertainment.
I think we are all aware of the film, Five Feet Apart. That was the first film I had seen that captivated a wide audience. When I speak to someone about cystic fibrosis or they discover I have cystic fibrosis, most people will ask, “Like the film, right? About five feet?” They then proceed to ask how accurate the film was or how it compares to my lifestyle. I am aware that everyone has their opinions of that film. I personally love the film and could go on and on, but I would say one of the positives that has come from the film is that it has brought awareness to the disease.
Recently, a new film has been released on Netflix, called Hi Nanna. Hi Nanna tells the story of Mahi, a six-year-old with cystic fibrosis who lives with her father and grandfather. She convinces a new friend to help her discover the unknown story of her mother. I was unaware of the release of this film and came to find out that it is an Indian romantic drama. I did some research prior to watching the film because I was unaware of the number of cystic fibrosis cases in India. I quickly learned that there are many people with CF in India.
Hi Nanna captured the emotional and mental effects of parents of people with cystic fibrosis. Mahi lived a normal life, but you could see at times the physical strain that her body went through regarding exercising, breathing treatments, and medications. Her father, Viraj, would go above and beyond to care for his daughter. This film captivated my interest cinematically as the visuals were beautiful. The pace of the film also kept my interest, and I love seeing other cultures and traditions portrayed on screen. I do appreciate how cystic fibrosis was depicted in the film. It wasn’t the full focus of the entire film, but it was balanced with the storyline. I found that the treatments seen on screen were portrayed accurately. I know that some viewers would like to see actors with cystic fibrosis. I think it would be great to see proper representation, and I think one day we will see more of that in film. For now, I am grateful that there is another film that brings more awareness to cystic fibrosis.
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