After watching the newly released Netflix movie “The Fundamentals of Caring” I wanted to explore my positive and negative aspects of the movie from the viewpoint of someone with Duchenne MD.
The Fundamentals of Caring stars Ben (Paul Rudd), a newly licensed professional caregiver seeking his first full-time client whilst trying to escape the loss of his son. Ben’s first client as a caregiver is Trevor (Craig Roberts), an 18-year-old guy with Duchenne muscular dystrophy.
Do I recommend this movie? It positively portrays DMD and caring in comparison to “Me Before You,” however many themes are simplified or quickly skimmed over. At certain points, it can turn saccharine and focus on cliché instead of character but Ben and Trevor have a great relationship with hilarious pranks and I enjoyed watching from the caregivers perspective. RECOMMEND
The movie starts in a classroom where the fundamental requirements of a caregiver are taught to Ben using the acronym ALOHA – Ask, Listen, Observe, Help, Ask Again. This acronym simplifies the caring profession too much, looking at it from a cold detached view without any empathy or compassion. If you cannot build an emotional connection or become part of your client’s whole life then maybe you wouldn’t have a long-lasting career. The film implies that Trevor has had a high turnover of carers over the years so he cynically expects Ben to be temporary so he doesn’t get emotionally attached. It illustrates the problems of care agencies many disabled people face, high turnover, repetitive training and life intrusion. The information provided to Ben about DMD again highlights the terminal nature of the illness, saying Trevor has 7 to 10 years left and would be lucky to reach 30. This kind of explanation is damaging to positive awareness of DMD and perpetuates the stereotype that disabled people need to be pitied. Life expectancy isn’t as important as the quality of life (in my opinion).
The Fundamentals of Caring tries to demonstrate how a Carer/patient relationship can naturally grow over time (albeit fairly quickly) and as Ben breaks Trevor out of his regular routine and to have the courage to increase the quality of life by going on a road-trip. The movie does have a habit of falling into the lonely disabled person stereotype who needs more than just physical help. However, throughout the film we see a reciprocal relationship develop, helping each other emotionally, without becoming a “teachable” moment. Ben talking about his son’s death illustrates this, “You thought you came here to fix me? You can’t fix me” an interesting flip on the ableist stereotype that disability needs to be ‘fixed.’
Now I want to explore the portrayal of Trevor by Craig Roberts, using an able-bodied actor instead of someone with DMD and was it realistic?
Trevor uses/needs realistic care (similar to me), CPAP at night, exercise routine, cough assist machine, medication, contractures in fingers, clearing secretions, disabled vehicle but bizarrely no hoist. During the road-trip, they encounter accessibility issues as the giant cow ‘Rufus’ was on the second floor but Trevor was carried upstairs. Hoists are an important item in DMD care because lifting can be a backbreaking health-and-safety nightmare for caregivers. However in certain scenes, Trevor seems overly able, sitting unsupported, lifts arms to air quote, has no head support especially in the car or choosing to not use CPAP at night. He is portrayed as a witty cynical teenager, without the usual depression that usually occurs in this role. Negatively Trevor doesn’t seem to have a life, does he go to college? Does he have friends? Disabled people can have busy social lives or gainful employment, which isn’t featured at all. Trevor is stuck at home with an overprotective Mother so Ben encourages an apparently “impossible” road-trip due to the amount of care needed. Strangely, if the road-trip impossible why did his Mum agree to it but not come along?
Queue in Selena Gomez as Dot the cliché “love interest”, a rebellious teenage hitchhiker there as a plot device to show Trevor’s character development or independence. Or as a way to clear up stereotypical questions, viewers may have on disability like: Does it hurt? Does your brain work? Does your penis work? The movie acknowledges the subject of sex/relationships and disability, but the first date anxiety or nerves when talking to a girl are similar to any teenage boy. Shows DMD lives come with ‘normal’ ups and downs not just related to disability and that we are able to find love too.
Ending with Ben leaving his caregiver role but staying as a friend beautifully illustrates the relationship that can be formed with the right Carer, someone who assists you to carry on living as independent a life as possible.
I would RECOMMEND this movie but bear in mind many interesting themes around disability are not developed enough and slightly fragmented.
Uncanny Vivek 