The Portrayal Of People With Als In American Media
According to the 2016 US census, it is estimated that 12.8% of Americans are living with a disability, but in the same year, less than 2.7% of the top 100 grossing movies even contained a character with a disability at all (Kraus, Lauer, Coleman, and Houtenville; Smith). With such a lack of accurate representation in media, how movies portray characters with disabilities may easily shape how many viewers see people with disabilities in their own lives. In the film The Theory of Everything, Eddie Redmayne portrays Stephen Hawking, an aspiring physicist diagnosed with amyotrophic lateral sclerosis (ALS) as he falls in love, builds a family, and continues his search for answers in the cosmos.
Before discussing the movies portrayal of the disease, it is necessary to define how the disease affects those actually living with it. To begin, ALS is defined as, “A classic motor neuron disease. Motor neuron diseases are progressive chronic diseases of the nerves that come from the spinal cord responsible for supplying electrical stimulation to the muscles”. According to the ALS Association, the disease causes damage to motor neurons responsible for voluntary movements, and takes away a person's ability to speak, eat, move, and breathe. The ALS Therapy Institute states that most people living with ALS live for two to five years after the first signs of the disease begin, and less than 10% of people live for more than 10 years (ALS Therapy Institute). Now that ALS has been defined, and before reviewing Eddie Redmayne's portrayal of the disease, it is important to remember that each person living with ALS may be affected differently.
In The Theory of Everything, Eddie Redmayne portrays a young, undiagnosed Stephen Hawking as he encounters the first signs of the disease, falls in love, and pursues his doctorate in Physics and continues to look for a unifying equation in black holes and time. After diagnosis, Stephen seems to quickly give up hope on his relationship, distancing himself from his girlfriend Jane. She tells him that if he doesn’t get up immediately and play a game of croquet, she will never come back. This encounter leads to Stephen quickly standing up before showing him angrily hitting a croquet ball and having to use a great bit of effort to walk over to it. After storming off, Jane follows Stephen back to his room where she confesses her love to him, and tells him that she is not leaving his side, even if they only have each other for two more years. This part of the film may affect the public's perception of the disease in a positive light, as it shows that people living with ALS are still able to fall in love and build new relationships. As the movie continues on however, Jane and Stephens relationship also portrays negatives of the disease as Stephen becomes more reliant on Jades Assistance to perform tasks such as eating, walking, getting up stairs, and getting into bed. As the need for assistance increases, Stephen appears guilty over all the care he requires, and encourages Jane to get someone to help her take care of him. These scenes may portray a more negative lighting on ALS to the public, but being somewhat based on a real story, these situations portray what Stephen and Jane had to overcome together, and these compromises can be seen as triumphs.
The last scene that may greatly affect the public's view of people living with ALS occurs when Stephen's speech becomes so slurred that Jane begins to translate for him. This scene seems extremely important to the movie because it shows just how far the disease can progress, where speech, something many people often take for granted, can become too difficult for a person living with ALS. Jane is able to translate for him easily, but the honest portrayal of such a large part of the disease continues to show that these obstacles can be managed. It is also largely apparent in the movie, that although there are many many obstacles Jane and Stephen face together, Stephen is portrayed as living a fulfilled life. This ideas is solidified as the movie ends with Stephen and Jane watching their kids play outside. Stephen begins to type on his computer before outputting, “Look what we made”, smiling as he refers to his kids before the movie rewinds back to the beginning.
Overall I think the movie portrays the disease positively, and although negative aspects of the disease are very apparent throughout the film, it feels very real as Stephen continues to overcome them.
