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Excerpted From: Angélica Guevara, The Need to Reimagine Disability Rights Law Because the Medical Model of Disability Fails Us All, 2021 Wisconsin Law Review 26 (2021) (133 Footnotes) (Full Document)
The wake of the COVID-19 pandemic amplified the need to examine disability antidiscrimination law. What if there is a future outbreak of the coronavirus or measles, potentially leaving many individuals with permanent disabilities? What if another unknown and highly contagious virus were to appear in the future and workplace accommodations were required for the masses to save lives and ensure the economy would not suffer? This reality is now at the forefront of American life.
During the early months of the COVID-19 pandemic, some individuals with preexisting health conditions risked their lives by going grocery shopping. Although not to the same extent, these people experienced stigma--similar to the experience of those positive for the Human Immunodeficiency Virus (HIV) in the early stages of the Acquired Immunodeficiency Syndrome (AIDS) pandemic. Like the COVID-19 concerns in 2020, society did not know how HIV spread in the late 1970s and early 1980s. AIDS was stereotypically associated with being a gay man. People stayed away if a person showed lesions or looked sickly. Similarly, before some officials mandated wearing a mask, people in grocery stores stayed away from someone wearing a face mask or coughing because it indicated that they were perhaps infected with the coronavirus and were trying to prevent its spread. COVID-19 was also initially blamed on a targeted group, the Chinese.
Young Americans in their twenties and thirties without underlying conditions are dying from this virus. People of color are at a higher risk of contracting the virus and dying from it because they are more likely to live in crowded housing conditions, work in essential fields, have inconsistent access to health care, suffer from chronic health conditions, and experience higher levels of stress due to income inequality and institutionalized racism, which in turn compromises their immune systems. The pandemic's racial and ethnic disparities are all the more reason for our laws to consider intersectionality and begin addressing the law using the tenets found in Disability Studies and Critical Race Theory (DisCrit) moving forward.
Even among those who recover from COVID-19, some people sustain long-lasting adverse health effects; as a cardiologist at Yale University said, “[i]t can affect the heart, the liver, the kidneys, the brain, the endocrine system and the blood system.” Lasting neurological changes impacting memory and cognitive function are among the most insidious effects on the brain; some of these lasting effects include myalgic encephalomyelitis/chronic fatigue syndrome and Guillain-Barré syndrome, possibly caused by a viral infection of the brain tissue.
Additionally, a virus may lay dormant for years, only to wreak havoc in the future. Congenital disabilities resulting from previous epidemics, as was the case with the Zika virus, increased the number of people with disabilities. In one day, an individual's health and abilities can change, compelling many to reevaluate their abilities and vulnerabilities. Acknowledging that vulnerability is universal and inherent to the human condition fosters a more egalitarian society. Relatedly, anyone with a disability could be vulnerable to potential civil rights violations, as seen in Alabama and Pennsylvania, where individuals with disabilities were placed at the end of the waiting list to receive ventilators. For the first time on a massive scale, Americans transitioned to working from home and experienced the reality that anyone--regardless of age, race, class, or gender--is susceptible to the virus and might require workplace accommodations as a result.
Those seeking the protection of disability antidiscrimination law, such as Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA), are in for a rude awakening. Disability antidiscrimination law in the United States is poorly suited to address the pandemic's emerging concerns. The current paradigm uses the medical model of disability, which treats disabilities as defects in need of treatment. This model reinforces the able body as the norm, perpetuating stigma and discrimination against people with disabilities by “othering” and limiting an individual's value to “reasonable accommodations.” Today, those with or recovering from COVID-19 become othered, an experience all too familiar for people with disabilities. The medical model has also informed disability antidiscrimination law's narrow focus on providing accessibility for public accommodations and has failed to meaningfully advance employment opportunities for people with disabilities. Achieving equity for people with disabilities requires disability law to adopt the social model of disability as informed by DisCrit, which recognizes the role society plays in constructing disability.
Current disability antidiscrimination law has been ineffective in overcoming the misleading understanding of human variation. Disability is not a personal problem, but rather a social reaction to natural human variation and the susceptibility to life circumstances. People can either be born with a disability or acquire one during their lifetime, be it a permanent or temporary disability. This is evidenced by the many who are recovering from COVID-19 and left with long-term health effects, such as shortness of breath, chest pain, and heart palpitations.
This Essay embraces poetic legal writing, meant to leave the reader to speculate as to the use and location of concepts and meaning. As such, it has somewhat of an atypical, scattered flow--but still retains a more formal structure. Part I lists the core tenets of Disability Studies and Critical Race Theory (DisCrit). Part II defines disability models with a mini-critique of the medical model, citing the disability studies field literature. Part III exposes the “othering” effect of disability antidiscrimination law by explaining the legal treatment of people with disabilities under the medical model of disability.
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The cost of not moving away from the medical model reduces our humanity to production and makes justice fall short--it becomes another slippery slope toward genocide, killing off those who are deemed undeserving based on this idea of what is “ability,” embracing a utilitarian view. The pandemic served to introduce the populace to the need to use DisCrit, as historical forms of oppression are still pervasive. To invest in the untapped human potential that is often suppressed in a medical model environment is a wise investment because there would be no waste of priceless knowledge found in the lived experiences of those who deviate from the status quo.
Some normative solutions for long-term change would entail implementing the social model of disability courses to shift ideology in our primary school systems that receive federal funding. By the time students enter the workforce, they would create, design, lead, and teach with a non-“othering” mentality creating spaces of belonging for people with disabilities. Maximizing the human potential and capitalizing on the most effective ways to do so moves our society forward because doing so values all human dignity. Some projects in the works are taking humanity to the next frontier, all because some companies have decided to provide access to people with disabilities, while simultaneously impacting the lives of people with or without disabilities alike. Systems and structures should be designed for individuals instead of having individuals fit into existing systems. It is time our laws reflected this belief and started reimagining disability rights law because the medical model fails us all.
Angelica Guevara is a neurodivergent Latina who works on disability rights law in higher education. She received her B.A. from UCLA, her J.D. from UC Berkeley Law, and her Ph.D. from UC Berkeley's Graduate School of Education.
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