Ableism in Healthcare Paper (1)

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1 Ableism in Healthcare Matthew Montante, Rayan Uddin, Neel Huded and Omar Khamiees Bouvé College of Health Sciences, Northeastern University PHTH 1260: The American Healthcare System Dr. Jay Spitulnik 27 April 2020

2 Ableism in Healthcare Ableism is best defined as “a negative view of disability. It frames being nondisabled as the ideal and disability as a flaw or abnormality. It is a form of systemic oppression that affects people who identify as disabled and anyone whom others perceive to be disabled. Ableism can also indirectly affect caregivers" (Sullivan, 2021). In the scope of American health care, ableism is structural and can determine health outcomes in the hospital. There are many malpractice cases and improper assessment and treatment of those with various types of disabilities. In addition to that, they are at the highest risk for diseases like COVID-19. Having an “intellectual handicap” was the strongest independent risk factor for COVID-19 death except for age. The causes of this increased risk are unknown. Still, they could include genetic factors (such as cardiac defects or immune dysregulation in DS), comorbid conditions (such as obesity and type 2 diabetes, which are more common in people with IDD), structural vulnerabilities (such as socioeconomic disadvantage, congregate living, and inadequate preventive health care). Ableism isn't as simple as refraining from using slurs like the "R word”; it is a subconscious behavior many are taught at a young age. The effects of ableism go much further than hurtful rhetoric; in some settings, there is physical violence people with disabilities experience due to their identity. Commonly used language such as "insane, crippled, spaz, psycho, and abnormal" are a few terms that insult those who may identify with serious clinical assessments. Those assessments do not make them any less of a person; rather, they exist as a part of their identity. When people use ableist language, it is disrespectful to those who may not have the same experiences. The clinical use of "abnormal" is another example of questionable rhetoric that daunts others. First, it is crucial to refer to the person by their name, not their disability; they are not their disability, but a human, just like the rest of us. It is encouraged to

3 use the term "accessible" in exchange for "disabled" or "handicapped" because these terms play into a long-lasting stigma around those who in society are not viewed as "normal." In certain pedagogical spaces, ableist rhetoric is deeply rooted. People who may relate to those identities often feel alienated and even dehumanized. When addressing the matter of ableism, it is important to first understand what this terminology means before going forward. The basis of ableism is similar to that of racism and sexism in the sense that it classifies certain groups of people to be less than those who aren’t classified into those groups. Ableism is the social discrimination against individuals with disabilities based on the notion that non-disabled people are superior. Ableism is based on the idea that people who have disabilities are flawed and need to be fixed. The desire to characterize people with particular genetics started in the early late nineteenth and early twentieth century and this concept was known as eugenics. Eugenics is the term used for the selection of desired heritable characteristics in order to improve future generations. The purpose of this practice was to also eliminate "undesirable" features in humans. In the early twentieth century, this practice was very popular among scientists, and this interest resulted in numerous mass sterilization initiatives that were carried out across the United States. The concept of eugenics also influenced the purpose of Nazi Germany and this concept resulted in the terrifying time in history known as the Holocaust (Resnick, 2021). However, the desire to characterize and eliminate particular genetics is still a practice done in today’s day and age, even though it is not as popular. New technologies, such as genetic testing and engineering, are also allowing people to avoid or "edit out" hereditary disorders that might cause handicaps (Resnick, 2021). Many people believe that these different practices could possibly lead to a modern-day kind of eugenics. The outcomes of eugenics have resulted in a more problematic outcome known

4 as ableism and this is a situation many people unfortunately have to deal with one a day to day basis. Ableism is a matter that is seen in our everyday life and is something that many non- disabled people partake in without even realizing it. There are many examples of ableism occurring in everyday life. One of the more popular or known examples that people don't tend to realize is talking to a disabled person in a condescending tone as if they are beneath them or if they were spoken to in a way that doesn’t portray a mutual sense of respect. Another known example of ableism is when people ask personal questions relating to someone’s disability and making those questions seem like it is some sort of burden (Resnick, 2021). When looking at the different ways in which ableism can be portrayed, it is specified into three main levels and three different forms. The main three levels in which ableism is portrayed are the institutional, interpersonal, and internal levels. The institutional level can take up many forms, but it mainly appears in the matter of medical services (Zillines, 2021). Medical ableism, for example, is based on the belief that any form of handicap is a problem that must be solved. When this is incorporated into medical education and policy, it has ramifications for the entire healthcare system as well as patient well-being. The interpersonal level appears very often as it is portrayed in a disbaled person’s social and personal life (Zillines, 2021). For instance, the parents of a disabled child will go to many hospitals and try to their utmost ability to try and “fix” their child. While, it is true that a parent must do everything in their ability to assist and aid their children, there is a certain extent for how much a family can assist their children, and at that point, acceptance of their child’s condition is a better result than denial. The final level of ableism is the internal level. The internal level of ableism pertains to how people think and act according to the negative traits they hear about disabilities (Zillines, 2021).

5 Beyond the three main levels, there further exists three sub forms of ableism: hostile, benevolent, and ambivalent ableism. Hostile ableism covers any form of aggressive behavior towards people with disabilities. Benevolent ableism portrays people with impairments as weak people who are incapable of living on their own. They are seen as people who rely on others in order to survive and are incapable of doing daily actions on their own. This belief diminishes the disabled individual's sense of worth and importance. The third and final form of ableism is ambivalent ableism. Ambivalent ableism is a combination of both hostile and benevolent ableism (Zillines, 2021). An example of ambivalent ableism is when a person is having a social interaction with a disabled person, and begins talking to that person in a condescending tone and treating him or her as less of a person due to these social interactions. Not only do the problems of ableism occur in the social interactions of a disabled person’s day-to-day life, it also affects how that person may receive healthcare. For instance, in the healthcare field, some doctors believe that having a disability leads to that person having a bad quality of life. This is predicated on the belief that a person's quality of life can only be great if they are not impaired, and that a person who isn’t disabled is considered to have a more valuable life. However, this form of thinking and this prejudice has major ramifications: it can lead to physicians disregarding their patient’s experiences, misdiagnosing someone due to their disability, mistakenly attributing new symptoms to a person's incapacity, or no longer providing medical assistance with the belief that providing these services would only be a waste of resources and that nothing these physicians do would help better the patient’s state (Zillines, 2021). Ableism can cause difficulties in obtaining healthcare for disabled people, and that could result in serious illnesses or even death.

6 Another serious issue that arises from ableism is prioritizing particular people’s lives over others. An example of this was during COVID-19, there were particular people who refused to comply with CDC guidelines and refused to wear a mask. These refusals resulted in the initial spread of COVID-19 and massively affected elderly people as well as those with disabilities. The COVID-19 virus was known to have a more serious effect on people that were either older in age or that were disabled due to their body not being as healthy or as prepared as that of other people. Some famous philosophers and politicians dehumanize those with disabilities through their theories without even knowing. Claiming that they are inferior or sub-human to the "normal people'' in the world is extremely inaccurate and morally wrong. This illusory scholarship intersects with the healthcare industry and improper patient care. The quantitative impacts are quite evident, as seen "in a recent nationwide survey, 82.4% of 714 U.S. physicians agreed that ‘people with significant disability have worse quality of life than nondisabled people'' despite prior studies indicating that many PWD self-report a good or excellent quality of life’” (Chicoine et al., n.d.). This results from poor communication and explicit bias that occurs in and out of the hospital. James Cherney, a professor at Wayne State University, isolates the material impacts of ableist targeted rhetoric and its mental framework: "ableism dominates the thinking of our society as a whole and it clearly operates as a discourse of power and domination. Furthermore, ableism becomes most visible as a mental framework transmitted through rhetorical devices including language, imagery, and systems of representation" (Cherney, 2011). This framework outlined was especially prominent in Chicoine's work, where they discuss the improper treatment of a 60-year-old patient named "Janet" who has Down syndrome (DS). Patients with DS or intellectual and developmental disabilities (IDD) often have to have a guardian or family member fill out a Do-Not-Resuscitate (DNR) form if their symptoms become

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