“Bioethics has not asked nearly a sufficient number of important questions about disability. Instead, it has confined itself to asking how disability might be eliminated through gene therapy, embryo selection, abortion, and the like; or how to treat/cure disability through surgeries, medical devices, and/or pharmaceutical interventions” (Scully 175).
Tong, Rosemarie. “Disability Bioethics: Moral Bodies, Moral Difference , by Jackie Leach Scully.” IJFAB: International Journal of Feminist Approaches to Bioethics 3.2 (2010): 175-80. Web.
The definition of bioethics is the study of ethical issues and moral discernment surrounding advances in technology, medicine, and biology. One of the major issues within this area of study is that of variation as opposed to pathology. In attempts to treat pathological difference, science and advancing technologies can run the risk of conflating divergence within this paradigm of pathology, and treat what is simply human difference as an undesirable and unacceptable abnormality that should be cured (instead of accepting or even embracing such). In order to properly treat those who actually have pathological difference, it is important to distinguish what conditions or “disabilities” are simply a form of human variation, and are not necessarily in need of remedying. In making this discernment, we can then begin to address and extinguish the stigma and discrimination that the disabled community faces. In assuming difference is in need of receiving treatment, we differentiate it from a societally-imposed definition of normality and marginalize those who embody these differences, effectively ostracizing entire communities. One of the crucial facets of this issue is that if these discernments are not made, new technologies could inadvertently contribute to a culture and practice of eugenics that threatens to eradicate human difference and diversity.
This notion of eugenics is covered in Rosemarie Garland-Thomson’s article, “Human Biodiversity Conservation: A Consensual Ethical Principle,” where she addresses what egalitarian principles mean in lieu of disability studies and how bioethics can be synthesized with these topics. Her overarching argument focuses on “a conservationist approach” (13), essentially arguing that society ought to feel the need to prevent disability from being eradicated because variation is not only fundamentally human, but is beneficial to humanity as a whole. With the rise of new technologies comes the opportunity to make many people’s lives easier, but what does easier mean for everyone, and whose lives need medical intervention to become more livable? These questions are difficult to address because they are multifaceted and do not apply universally to everyone, but are incredibly important because they are ubiquitous, inevitable, and are generally not asked. When these questions are left unasked, it is often because those with normalized bodies make assumptions about others’ qualities of life and what they deem obstacles to being a healthy and productive member of society. Using data and science to corroborate what many in disability studies already know and believe, Thomson demonstrates that “social science research… show[s] that a correlation between disability and low quality of life is neither consistent nor predominate” (15). Not only is it incorrect to assume that living with a disability equates to a lower degree of living, but it is incredibly dangerous and can lead to malpractice. Instead of exclusively focusing on medical solutions to address the presumed obstacles disabled people face, it is often more effective to look more closely at the social model of disability. This model states that the idea of disability arises from a lack of accommodation and accessibility from within society, and ought to be used in conjunction with the medical model of disability to better attend to the needs of everyone. Unfortunately, we have a long way to go before this idea can become realized and actualized, as the focus remains on the medical model in contemporary society. Budding novel genetic technologies have been shown to detect and handpick certain traits and edit others so they no longer translate into phenotypic traits. Beyond this idea of the selection for certain traits and in turn, eradicating other forms of differences, is the postulation that in conserving and affirming disability we can begin to afford this community the opportunity to flourish.
“Disability studies challenges this disability determinism by showing six truths: All human beings need care, assistance, and a sustaining environment to live; disability disadvantage results from living in an unaccommodating environment; quality of life cannot be predicted in advance; disability can produce life advantages; what counts as disability changes over time and space; and the border between disabled and nondisabled shifts over a lifetime” (Garland- Thomson 15).
Garland-Thomson, Rosemarie. “Human Biodiversity Conservation: A Consensual Ethical Principle.” The American Journal of Bioethics, Emory University, 1 June 2015, www.tandfonline.com/doi/abs/10.1080/15265161.2015.1028663.
Shi Tiesheng was a pioneering writer of the 1980s in China. His works were monumental because they articulated the disability experience during a pivotal time – where civil rights for those with disabilities were burgeoning into mainstream political discourse. Partly thanks to his work and those of others who spearheaded this movement, they soon made breakthroughs in the rights of the disabled in education, infrastructure, representation and many other advances for the community. Shi himself acquired a disability after going to the Chinese countryside as a “sent-down” youth to do hard labor (Starr). This was part of the Chinese Cultural Revolution, where many young people at the time were sent down to rural areas of China to undergo what was considered an “educational” experience, but was really just unimaginably arduous and fruitless labor (Xie et. al). In Shi Tiesheng’s short story, “Summer’s Rose,” an elderly man’s experience with an acquired disability and an unborn child outlines the prevalence of ableist beliefs in China. One of the ongoing storylines of the narrative is the plight of a young family deciding on whether to have their child or not, as it has a “95% chance of being a cripple” (Shi 4). In the end, the family decides to let him go, and this is where the notion of eugenics and bioethics is brought into the story. The elderly man perceives his disability as a burden and exhibits some internalized ableist beliefs, but is depicted in a very humanizing and compassionate way that allows the reader to realistically explore the disability experience – but first and foremost, a complex human being. This is incredibly important, as this does not utilize the main character’s disability as a “narrative prosthesis” (Snyder) simply for the advancement of the plot or a metaphorical symbol, and it makes those with disabilities more akin to the everyday citizen. However, the prevalence of ableist beliefs within this story must not be overlooked, as it is imperative to consider these to holistically analyze “Summer’s Rose.”
With advances in technology, the doctors found the unborn child of the young family had a “95% chance of being a cripple from the moment he [was] born” (Shi 19). In this scene, there are two main ethical issues that are introduced: how to determine what the quality of life will be like for those who are born with or will develop disability, and whether it is ethical to determine who lives and who does not with this determination. Throughout the story, the man describes the unborn child’s life as burdensome to society, and also to his own well-being. In doing so, he is presumptuous in assuming the child will languish in life and that his life will not be worth living. In the article “Human Biodiversity Conservation,” Thomson argues that “to evaluate whose lives ‘are only barely worth living’ [is a] foundational concept of eugenics” (14).
Thomson argues that “to evaluate whose lives ‘are only barely worth living’ [is a] foundational concept of eugenics” (14).
Unfortunately, the old man buys into this concept, reflecting how ingrained these beliefs were in society. In China specifically, this belief was pervasive because there was a strong desire to create a strong nation-state, and they believed undesirable traits must be eradicated to accomplish this end. Sadly, people with disabilities comprised a large portion of the population that was targeted. Instead of questioning whether society ought to change in order to become more accessible to those with disabilities, the man accepts society in its inaccessible state, and believes preventing the child’s birth is the sole solution to his assumed misery.
Disability could be eliminated by “redistributing economic resources, and changing educational and employment policies” (Scully 36).
Tong, Rosemarie. “Disability Bioethics: Moral Bodies, Moral Difference , by Jackie Leach Scully.” IJFAB: International Journal of Feminist Approaches to Bioethics 3.2 (2010): 175-80. Web.
At Georgetown University within the Kennedy Institute of Ethics, an annual panelist discussion is held on “Conversations in Bioethics,” where distinguished speakers are invited to share their expertise on a certain facet of bioethics. In 2017, the Institute hosted a discussion on bioethics surrounding disability, featuring six diverse panelists who shared personal anecdotes as well as showcasing their intellectual niches as a lens to examine disability and bioethics.
The Speakers:
- Julia Watts Belser is an ordained rabbi and an Associate Professor at the Department of Theology within Georgetown who coalesces queer, feminist, and disability studies with Jewish ethics and literature
- Lydia Brown is an attorney as well as teacher at Tuft University who is a grassroots activist and focuses on raising awareness about disability injustices and intersectional identities
- Teresa Blankmeyer Burke teaches at Gallaudet University as an Assistant Professor of Philosophy who has researched ethics related to deaf philosophy and culture
- Rick Guidotti is a renowned fashion photographer that is also the founder of Positive Exposure, he has worked with many organizations and educational institutions to change approaches to disability
- John Hockenberry is a world-renowned journalist and author who is also a four-time Emmy Award and three-time Peabody Award winner who has become significant to disability studies and justice
- Donn R. Walton has served as manager to several programs within the federal government concerning disability representation and opportunity in the workforce, she is also an author and created the organizations LEGGTALK and The Divas With Disabilities Project
This discussion was exceptionally comprehensive and all-encompassing in terms of topics as well as number of perspectives. Each speaker is incredibly accomplished and well-versed in their respective subject matters, offering valuable insight into what it means to have a disability, what obstacles they have encountered in our ableist society, and what kinds of ethics they have had to navigate as society and technology progresses. Specific to bioethics, Teresa Blankmeyer Burke covered the notion of cochlear implants to allow deaf and hard-of-hearing individuals to hear again, and John Hockenberry discussed topics of sexualization and medical solutions for paraplegics.
Gene-Editing Technologies
Photo by National Cancer Institute on Unsplash
CRISPR-Cas 9 is a very recently developed technology that allows scientists to single out genomes and edit them to essentially eradicate genetic disease and alter genes in other contexts. While still very much in the novel and experimental stages, many have raised concern over what kind of implications this technology could have in ethical and legal aspects of society. While it is revolutionary that painful and lethal genetic diseases such as leukemia, HIV, and sick-cell anemia could be erased from humankind, there is a very fine line to balance when it comes to what genes are edited. In terms of disability studies, many are concerned certain disabilities could be included under the umbrella term of “diseases” that could be edited out of the human genome. This goes back to the medical model discussed above, where it is assumed that those with disability automatically endure a lower quality of life, and that “curing” them of their disability will radically improve their well-being. This presumption is incredibly dangerous, and fails to consider the concepts of acquired versus congenital disability, the societal model of disability, and variation versus pathology. This also fails to address the fact that “disability” in a semantic context has a very fluid definition, as a century ago even females and racial minorities were considered “disabled” because they were thought to have a decreased level of mental faculty. It also goes back to the problematic history of eugenics, as this could be a tool used to propagate these ideals by selecting for more “desirable” traits, eg: Aryan or other similar physical characteristics, in attempts to further oppress those who do not have these traits. Another issue associated with this technology is who will have access to it, as it could only be available to the affluent and upper-class due to various financial constraints, showcasing an intersectional complication to this biomedical technology. While very promising, these ethical issues must be kept in mind while addressing the legal constraints and other developments surrounding this innovation so as to conserve and preserve human biodiversity.
Autism Spectrum Disorder
Photo by Nathan Anderson on Unsplashed
What is Autism Spectrum Disorder?
ASD is a spectrum syndrome, as discovered by Leo Kanner in 1943. This means the specific manifestation of the disorder depends on the level of functioning and there is a wide variety of symptoms for each individual who has ASD. As defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) of the American Psychiatric Association, ASD is define by deficits in social communication and restricted/repetitive behaviors – and can be with or without language and intellectual impairment.
For those with lower functioning ASD, what tools are available to help them succeed?
At the University of California, Santa Barbara (UCSB), the Koegel Autism Center within The Gevirtz School has developed a revolutionary treatment to assist infants with higher social communication deficits with ASD. This treatment is called Pivotal Response Intervention for Social Motivation (PRISM), and focuses on “pivotal” abilities such as imitation and social motivations that may have broad cascading positive effects on other social skills. According to the research center, the results shows that post-PRISM, social scanning and a clinical measure of adaptive language ability improved together, showing very promising impacts of the tools and ethical treatment used in this study (Dr. Tasmin German).
What advantages can come with having ASD?
Individuals with ASD tend to have enhanced detail-oriented processing skills as a particularly impressive island of ability compared to the general population. One famous case of this is artist Stephen Wiltshire, who has become famous for drawing entire city scapes directly from memory in incredible detail. Furthermore, those with high-functioning ASD have also been sought after for the technology company Mindspark, who hires these individuals because of their uncanny ability to process immense amounts of detail in computer software so as to detect glitches and bugs.
These and other cases showcase the gains that are unique to individuals with ASD, as well as how proper accommodation can lead to ethical treatment and employment opportunities for these individuals. Part of the reason why treatments like PRISM and workplace accommodations are so important is because there has been a history of malpractice and inhumane “treatment” directed towards those with ASD. When Autism was first defined and observed in the early 1940s, treatment was very limited and did not show much promise. Individuals with ASD were often carted away and sent to institutions to live away from the public and simply hidden away, often facing inhumane treatment. While treatment and awareness has improved in contemporary society, organizations like the Autism Self Advocacy Network are immensely important in providing self-representation and advocating for disability rights, as there is still a lot of progress to be made. An approach to disability studies that has recently emerged is that of neurodiversity, where it is argued that ADHD, dyslexia, and ASD are part of the normal variation of the human genome. Judy Singer, a sociologist, coined the term in the 1990s in hopes of transforming the perception of these disorders away from what is lost or in need of a “cure,” and instead to the perception of it as simple human difference. This approach also factors in the concept that disability is a part of the individual’s identity, and so attempting to “cure” it would be taking away a valuable and integral aspect of that person. It is undeniable that all humans are different on an individual level, and so conflating disability with pathology can no longer be an acceptable nor ethical approach to the perception of disability as a whole.
