Jefferson University came out with a scale in which patients are able to rate how empathetic their doctors are. With not surprising results, their results showed that doctors who displayed a higher ranking on the scale (i.e. more empathetic) reflect patients who recovered faster.
Pertaining to our discussions and the documentary, the ablest conflation is probably most evident within the medical community, granted that the discipline is geared towards curing ailments and/or disabilities. What I find so difficult about being a physician in the upcoming year is how to walk the line between providing care for others without making assumptions about the negativity of their states.
Would I would be interested in understanding is how the ablest conflation, or lackthereof for a better analysis, impacts the Jeffersonian scale of empathy. I hypothesize that doctors who display a decreased hold of the ablest conflation would have higher ratings on the scale than doctors who do hold the conflation. By understanding the sociopsychological impact of healthcare providers, we can optimize the best quality and direction of care for future patients.
Over the past years I have seen my grandmother’s motility decline – what once began as a slight pain a couple of years ago has now progressed into persistent swelling and inflammation of the knees and ankles, distortion of her feet bones, and a considerable reduction in the ease, agility and speed of her walking abilities. Rheumatoid Arthritis has made my grandmother who once would never be seen sitting around the house – but instead would be out and about in the garden, or in the marketplace or at the local school where she taught- prefer staying indoors. Even though her attitude and outlook have been maintained with the same positive fervor and bubbly charisma, the impediment to her motility has certainly reduced her feeling of independence and freedom of movement and scope of access to areas. When we saw the movie in class on Thursday, I sort of came to terms with my worst fears – I felt like I saw a pre-reflection of what to expect in the future. Even though the severity and prognosis for my grandmother is not as bleak as Jason’s is, I nevertheless felt a little unsettled by imagining what the future held for my grandma.
From the film When I Walk, a couple a things stood out to me in particular. First was watching Jason’s disease rapidly progress along the course of the documentary. His debilitation was so fast and overcoming that more and more parts of his daily life became difficult or inaccessible. On such a more minute scale, it made me think of when I tore my hip flexor my senior year of high school. I remember trying to run while it was healing and pulling up after 10 feet, realizing I could barely walk. The emotions I felt upon that realization brought me back to the title, and how above all it is valuable to appreciate the ostensibly insignificant abilities we take for granted on a daily basis. Because of the sheer evolvement of his MS, you could frame his life and the people around him in such a way to see if they changed too. During the film, though I tried my best to put myself in their shoes, it seemed the central people in Jason’s life tried, but didn’t fully succeed, in understanding his condition. This is completely speculation, as he may not have minded how they treated him, or simply appreciated their candor and presence. That being said, his wife at times seemed unintentionally callous regarding his MS, and her need to take a hiking trip by herself seemed confusing. His mother, too, seemed almost too far on this side of the spectrum, giving him the truth too bluntly that it lacked any motherly compassion. Overall, I found it to be a really eye-opening film that gave me a perspective on a disease about which I knew little.
When I was in elementary school, I participated in a mandatory program called “Understanding Disabilities” which focused on a particular condition each year. During the three years my class did the program, we learned about blindness, deafness, and cerebral palsy. What stood out to me the most was not what this program offered in terms of content, but its name. Between two of the years, “Understanding Disabilities” became “Understanding our Differences.” The new title seems more fitting because it does not label the ‘disabled’ person who came to talk to us. The label gives the impression that this person came to talk to us about a problem they have and the struggles they face because of it. The idea of “difference” changed the nature of program toward understanding that we are all very similar, despite some of these differences, and the disconnect comes from our inability to overlook differences that we deem ‘significant.’ Who should decide what is ‘significant?’ Why has this idea of ‘difference’ replacing ‘disability’, which I heard about as early as 2005, not yet become universally known? What steps have been taken in the last 10 years to progress and preach it?
When I think of the word “disability,” I usually picture disabilities that are visible and physical disabilities, for example, a wheelchair. Donna Reeve’s article “Psycho-emotional Disablism” discusses the idea of the disablism as a form of social oppression. I’ve taken classes that involved discussions about race and social oppression – specifically, I’ve discussed the idea of double consciousness as it pertains to race. I’m intrigued by the idea that stepping outside the social norms can act as a form of resistance as Reeve discusses in her article with the example of Lucy wearing a red wedding dress. I’m curious about how people with invisible disabilities express these forms of resistance when so many forms of resistance, from hair to dress to skin, are often so visible.
The most impacting part of the film for me was the portrayal of the progression of Jason’s Multiple Sclerosis. The same way that we can’t imagine our grandparents as anything but old, it’s hard to look at someone in a wheelchair or with a debilitating illness and see ourselves, just a few steps earlier. Being disabled seems so far removed from the picture of health I am now, but it doesn’t have to be. Things completely out of one’s control- one car crash, one genetic mutation, one inherited allele- can bring disability upon a completely healthy person. That’s scary, but it relates the importance of not distancing ourselves too much from people with disabilities, having empathy win over sympathy or pity. Jason was a completely healthy filmmaker who acquired Multiple Sclerosis; it could have been any of us.
My next door neighbor also recently developed multiple sclerosis and when I saw her at events and neighborhood gatherings, I didn’t know what to say. So I just didn’t say anything. MS seemed like such a vague disease, and I had no idea what she was going through because she had the outward appearance of normalcy, for the most part. She and her husband recently had to move to a one-story house, the reasons for which I can now understand so much better after seeing the documentary and Jason’s struggle with stairs/ overall movement.
The first connection I would like to make between the film and our discussion is that while Jason make this film about himself, he is constantly seeing himself, and he also directly said he is “allowing (himself) to see (himself).” This reminds me of our discussion about seeing ourselves seeing. However, gradually, Jason is losing his vision too, so this added another layer of seeing himself losing the ability of seeing. This idea is getting complicated with simple words. Just like our fist discussion about “What is.”
The second connection from the film is at the scene of Jason getting onto the plane. This reminds me of reading that described similar experience. Even though in the film, Jason did not explain on any feelings he possibly had while being assisted onto the plane, from the fact that he edited more than one scenes that have people helping him onto the plane indicating some hidden emotions.
In class, we watched the documentary “When I Walk.” The movie did a good job at taking the experience of a single individual with MS and really understanding what the individual was feeling. It was a really eyeopening film, as it made me realize how how ignorant I was about how others might be feeling when going about their everyday lives. It really made me reflect upon how I can better work on being more educated and understanding on certain issues in todays society.
Going back to the film. At one point in the movie, Jason describes MS as a disability. I agree that there are certain aspects of the cultural idea of disability that makes MS a disability, however, I also think some aspects of the cultural idea of disability that are further misconstrued by the movie. One one hand, the idea of disability is well demonstrated. This can be seen through the authors struggle to access daily necessities and getting around. On the other hand, the idea of disability is misconstrued. The one point that stood out to me the most, was that disability equates to sadness. Even though positive aspects of Jason’s life are apparent, there seems to be an overarching tone of negativity when describing his life. I think it is great that the story of MS is being shared, however, labeling an individual as disabled can cause different misconceptions on what being disabled actually means.
Considering matters of ability and disability, and various other categorizations that society imposes on us, one realizes that this system of labeling is extremely biased and restricting, and negatively impacts individuals’ quality of life in a targeted way. Individuals are all unique in their own right, so sorting people into rigid groups is inherently flawed. Beyond this, one category is typically favored over others. This, of course, is problematic because society is built to accommodate only the needs of this select group of people on the basis of false value. And individuals who fall outside of this group are harmed by this because they are forced to live in an environment that does not encourage them to thrive as they inherently could. I think it’s important to consider that there are many, many ways to live life well, and to foster an environment that encourages and embraces this. Labeling does not have to have a negative connotation so long as labels are considered fluid and flexible in definition and insufficient for capturing and considering an individual’s unique experience.