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

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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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7 severe and if they see the need to. Janet was extremely fortunate to have a primary care physician (PCP) she had worked with for a long time. Their PCP knew her family would not want a DNR order, and specifically did not fill one out because he knew Janet had a “full and enjoyable life.” When her condition worsened after she contracted COVID-19, she was transferred to the ICU, and the ICU team repeatedly asked the PCP why they did not fill out a DNR code. Because of his relationship with Janet, he was able to shut down the discussion of a DNR after they asked him four separate times. Not everyone with DS is as fortunate enough to have a PCP like Janet’s; this is a prime example of disability bias seen in the healthcare industry. We need to embrace stronger communication tactics inside and across health care systems so that inpatient teams understand how to contact these providers and do so more regularly. Health passports, for example, can identify these relationships while also communicating brief, useful medical and disability- specific information to provide an inpatient team context (Powell, 2021). Furthermore, healthcare systems may contemplate a paradigm in which certain clinicians specialize in a difficult demographic and follow their patients from outpatient to inpatient treatment. Another key installment is to build an inclusive, patient-centered care culture and create and engage the disability access (or resource) coordinator or other professional responsible for hospital compliance with Section 504 and the ADA if one is not already in place (Peppar, 2021). It is paramount to ensure that people with disabilities have a voice in hospital policy debates, ethical committees, and the healthcare staff, among other conversations. Both our understanding of disabled persons and others' understanding of themselves are shaped by language. We can make changes to reify normative ideas and our interactions with society using our words to promote anti-ableist scholarship.

8 One piece of legislation aimed at eliminating ableism in the healthcare field is the Americans with Disabilities Act of 1990, the ADA. The intention of the ADA is to allow Americans with disabilities to be provided equal opportunity and access to goods, services, and benefits afforded to those without such a disability. Disability as covered under the act is described as those with physical or mental impairment that substantially limit any major life activities, as well as those who have a record of or are perceived by others as having such an impairment (Introduction to the Americans with Disabilities Act, 2022). The act applies to employers, government services, businesses that are open to the public, and any other organization that interacts with the public. Healthcare providers are therefore bound by the ADA as well. In the context of the healthcare field, some barriers to access which the ADA aims to eliminate include physical barriers in healthcare buildings as well as discriminatory practices from providers and management. Physical accommodations can be seen clearly in many public spaces, including healthcare-related ones, and include wheelchair ramps and elevators that supplement stairs, rooms that are large enough to accommodate the turning radius of patients who use wheelchairs, and accessible parking spaces (Health Care and the Americans With Disabilities Act | ADA National Network, n.d.). Other examples of physical accessible features include scales that can accomodate wheelchair users and height-adjustable examination tables to accommodate patients with mobility problems (Mudrick & Schwartz, 2010). Healthcare providers are obligated to remove barriers to access unless they can show that doing so would cause undue burden. Common complaints from patients include radiology clinicians who are not trained in assisting those with mobility issues into MRI or X-ray machines and elevators that are either too small or are limited in functionality (Ordway et al., 2021). Healthcare professionals

9 should improve their competency training to recognize the need for functional access to healthcare in order to be able to most effectively serve their patients. The necessity for providers to understand the need for disability accomodations is demonstrated as while only 22% of surveyed physicians used ASL interpreters opposed to lip reading as mandated by the ADA, physicians who knew the inefficiencies of lip reading were more likely to use ASL interpreters (Hommes et al., 2018). If providers were to know the unintentional--or intentional-- consequences of their inaction, then accommodation utilization will rise. Equally important are the non-discriminatory practices and procedural accomodations required by the ADA. Providers are required to provide reasonable accommodations to patients with disorders such as anxiety or PTSD for example. These accomodations can be as simple as allowing these patients priority to appointments where the office will be less busy and therefore quieter. Other patients may be late to appointments due to problems with paratransit and providers should be lenient towards those who rely on it. Patients who are blind, deaf or have other sensory impairments also require accommodations such as ASL interpreters, readers, and text-to-speech tools which are oftentimes inadequate or even completely lacking. Over 50% of surveyed patients with sensory impairments feel that they do not receive adequate accommodations for their disability (Ordway et al., 2021). When these patients with sensory impairments are not given the appropriate aids or services needed, this poses a significant barrier to healthcare access for these individuals. Deaf individuals will have difficulty understanding spoken information given to them while blind individuals will have difficulty understanding written material when they are not given the information in an alternate format. The ADA makes it clear: if a patient is unable to effectively communicate with care providers without aids, providers must provide such aids. Because physical accommodations such as ramps and wider

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10 doorways are easier to clearly define and enforce, the compassionate or sensory accommodations covered under the ADA are more often overlooked and neglected, causing a significant barrier to healthcare access for the patients who require them. When patients covered under the ADA are not granted equal access to healthcare as mandated by the ADA, they can feel excluded and as though they are a burden to the healthcare system that is supposed to help them. This can lead to patients with disabilities to delay care which can lead to mismanagement of chronic afflictions, undiagnosed symptoms, and poorer health outcomes. For example, deaf and hard-of-hearing individuals are found to take part in fewer preventative health measures such as mammograms, pap smears, and colonoscopies (Hommes et al., 2018). The main cause for this according to the deaf community is the access barrier stemming from poor health communication. Representing around 60% of all healthcare access-related ADA complaints with settlements by the Department of Justice, the most common healthcare access barrier posed to disabled individuals covered under the ADA is the failure of healthcare providers to supply effective communication tools to deaf individuals who require ASL interpreters (Mudrick & Schwartz, 2010). However, using data from settlements with the DOJ only highlights the ADA violations that are beginning to be addressed. ADA violations are far more common than just those acknowledged by settlement outcomes. The cost burden of providing services such as qualified interpreters note-takers is upon the provider, and yet only 10% of surveyed patients reported always receiving interpreting services when requested (Ordway et al., 2021). Patients with disabilities have also reported doctors refusing to treat them, claiming that they don’t specialize in their disability. Healthcare providers fall under Title III of the ADA which dictates that providers cannot refuse service to patients with disabilities unless it would fundamentally

11 alter the nature of their business (Health Care and the Americans With Disabilities Act | ADA National Network, n.d.). A doctor treating a patient with a disability for a need unrelated to their disability is not a fundamental alteration. Despite the steps taken towards eliminating it, the reality is that ableism on both the individual and institutional level is still a prevalent issue in today’s society, with discrimination and prejudice present in all aspects of modern life. The prejudices, microaggressions, and oppression that disabled people have to endure throughout their lives in even extremely developed western nations have exposed an internalized and normalized ableist society that disproportionately affects the wellbeing of handicapped people. Firstly, many oppressive laws and policies exist on an institutional and national level that often disproportionately affect and suppress people with handicaps. These such norms and rules help to reinforce an individual bias towards handicapped people, and often even serve to further internalize biases towards those with disabilities. This often varies in many types of oppression from microaggressions, which are most common in the western world, to complete outwards discrimination and violence towards those with disabilities, which can be more common in developing nations around the world. Microaggression is identified by Jóhannsdóttir as “intangible discrimination and prejudiced interactions”, and often can be either intentional or unintentional. This usually leads to self- blame, and microinvalidation for people who are handicapped, and helps to perpetuate this problem even further. Furthermore, many nondisabled people see one of the main ways a disabled person can gain their respect rather than pity is by overcoming their disability. This kind of thinking can be dangerous, as it promotes an idea that those with disabilities are not “equal”, or even “normal”, and the only way they can hold a respectable place in society is by overcoming this disability. Rather, a better way to approach disability and physical or mental

12 handicaps is to acknowledge that all people regardless of their abilities are equal and “normal.” Understanding that handicaps are not the identity of someone, but rather just a different way of doing things, would take us much further as a society and as individuals. (Jóhannsdóttir and Egilson and Haraldsdóttir, 2022). An example of internalized ableism in society is the serious problem of underrepresentation that exists amongst disabled people in STEM fields. While 20% of undergraduates in the United States have an identifiable disability, only around 10% of STEM undergraduates, 6% of graduate students, and 2% of doctoral students identify as disabled. These statistics uncover a huge problem in the STEM world, in which there is an internal prejudice and ableist mindset that prevents many students with disabilities from pursuing futures in STEM fields (Peterson 2021). As a society, we must collaborate to end the challenges that face disabled people in various fields in today’s modern world. Using the STEM field as an example, we can increase access to academic accommodations in schools and colleges. With increased accommodation and access to fair resources, the representation of disabled people in STEM fields would increase, and access to fair systems of education would benefit the whole society. While ableism is evidently such a large problem in today’s society, there are many steps that we can all take to prevent ableism individually and institutionally. A major step in preventing and solving individual stigma against disabilities is to educate and learn about disabilities and handicaps. By educating the youth in school, as well as adults in the professional world, we can help to improve people’s understanding of the plight of disabled people and their hardships. By teaching the population about the different types of disabilities, accessibility solutions, and the way in which disabled people experience hardship in our society, we can start to solve the problem of normalized “ableist” behavior. Secondly, by critiquing one’s surrounding

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13 environment for access for all people, individuals can keep those in positions of power responsible for having equal accessibility to all buildings, especially healthcare access, emergency service buildings, and other important infrastructure (Peterson 2021). Another way that individuals can prevent the perpetuation of ableism is by changing their language used to be more inclusive and less discriminatory towards disabled people. Just as appropriate language has been designated and accepted in society for the empowerment of women, minority groups, LBTQ+ groups, and many more, the same transformation in speech towards empowering disabled people is one way that individuals can greatly help to decrease the prevalence of ableism in our society. Furthermore, organizations, corporations, and any large bodies must shift their promotional language and messages to include all those who might be handicapped, and stop perpetuating a “norm” of ableism (Smith, and Mallick, and Monforte, and Foster, 2021). Another way in which society can move away from an ableist society to a more accepting and just one is by including disabled perspectives in professional fields and schools, in order to give exposure to students and adults about the journey disabled people face in society, and also to increase the representation of handicapped people in media as well as professional fields. Professional and media representation of accomplished disabled and handicapped people would help to remove the stigma and negative prejudice towards people with disabilities. Furthermore, representation would be a positive force for change in many sectors of society, but most importantly would help to give children with handicaps role models, and success stories to draw motivation and acceptance (Peterson, 2021). The overall effect ableism has on the healthcare field is an entire demographic of disabled patients being allowed to feel as though they are a burden to providers and being given improper or inadequate treatment. Ableism both in the healthcare field and the general society is ingrained

14 both in history and present-day, so while legislature and other movements have begun to combat ableism in the healthcare field, the fact is that this problem still requires major solutions. Because ableism is oftentimes subconscious, and proper education lacks with regard to ableism, healthcare providers often cannot see the damage caused by their action or inaction. When society and healthcare providers are properly educated on topics such as proper terminology and disability accommodations, only then can the healthcare system become a more accepting resource for all patients.

15 References Health Care and the Americans With Disabilities Act | ADA National Network . (n.d.). Retrieved April 13, 2022, from https://adata.org/factsheet/health-care-and-ada Cherney, J. L. (2011). The rhetoric of Ableism: Disability studies quarterly . The Rhetoric of Ableism | Disability Studies Quarterly. Retrieved April 25, 2022, from http://dsq- sds.org/article/view/1665/1606 Chicoine, C., Hickey, E. E., Kirschner, K. L., & Chicoine, B. A. (n.d.). Ableism at the Bedside: People with Intellectual Disabilities and COVID-19 . American Board of Family Medicine. Retrieved April 20, 2022, from https://www.jabfm.org/ Hommes, R. E., Borash, A. I., Hartwig, K., & DeGracia, D. (2018). American sign language interpreters perceptions of barriers to healthcare communication in deaf and hard of hearing patients. Journal of Community Health , 43 (5), 956–961. https://doi.org/10.1007/s10900-018-0511-3 Introduction to the Americans with Disabilities Act . (2022, April 8). Beta.ADA.Gov. https://beta.ada.gov/topics/intro-to-ada/ Jóhannsdóttir, Á., Egilson, S. Þ., & Haraldsdóttir, F. (2022). Implications of internalised ableism for the health and wellbeing of disabled young people. Sociology of health & illness , 44 (2), 360–376. https://doi-org.ezproxy.neu.edu/10.1111/1467-9566.13425 Kaundinya, T. (2022, February 2). Dismantle Ableism, Accept Disability: Making the Case for Anti-Ableism in Medical Education . SAGE journals. Retrieved April 21, 2022, from https://journals.sagepub.com/doi/full/10.1177/23821205221076660 Mudrick, N. R., & Schwartz, M. A. (2010). Health care under the ADA: A vision or a mirage? Disability and Health Journal , 3 (4), 233–239. https://doi.org/10.1016/j.dhjo.2010.07.002

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16 Ordway, A., Garbaccio, C., Richardson, M., Matrone, K., & Johnson, K. L. (2021). Health care access and the Americans with Disabilities Act: A mixed methods study. Disability and Health Journal , 14 (1), 100967. https://doi.org/10.1016/j.dhjo.2020.100967 Peppar, C., M, P., & Rishi, A. (2021, August 31). Health equity requires anti-ableism . Publications.aap.org. Retrieved April 21, 2022, from https://publications.aap.org/aapnews/news/15488 Peterson R. J. (2021). We need to address ableism in science. Molecular biology of the cell , 32 (7), 507–510. https://doi-org.ezproxy.neu.edu/10.1091/mbc.E20-09-0616 Powell, Robyn M., Confronting Eugenics Means Finally Confronting Its Ableist Roots , 27 Wm. & Mary J. Women & L. 607 (2021), Retrieved April 20, 2022, from https://scholarship.law.wm.edu/wmjowl/vol27/iss3/2. Resnick, A. (2021, October 27). What is ableism? Verywell Mind. Retrieved April 26, 2022, from https://www.verywellmind.com/what-is-ableism-5200530 Smith, B., Mallick, K., Monforte, J., & Foster, C. (2021). Disability, the communication of physical activity and sedentary behaviour, and ableism: a call for inclusive messages. British journal of sports medicine , 55 (20), 1121–1122. Sullivan, D. (2021, November 7). Ableism: Types, examples, impact, and anti-ableism . Medical News Today. Retrieved April 21, 2022, from https://www.medicalnewstoday.com/articles/ableism#:~:text=What%20is%20ableism %3F,others%20perceive%20to%20be%20disabled. Villines, Z. (2021, November 7). Ableism: Types, examples, impact, and anti-ableism . Medical News Today. Retrieved April 26, 2022, from https://www.medicalnewstoday.com/articles/ableism

Ableism in Healthcare Paper (1)

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