Sociology of Health and Illness At Disability and the Ethics of Embryo Selection

Although disability and illness overlap at times in the effects they have on the sufferer’s health, and by extension their quality of life, the two conditions are separated by a few distinctions. While illness can vary in length and the intensity of its symptoms, the Equality Act of 2010 states a disability is defined as a physical or mental impairment that has a significant, long-term negative effect on the disabled person’s ability to perform day-to-day tasks (Equality Act of 2010). As disability is defined both by how debilitating it is and the length of time it persists, disability is therefore different from illness in that it becomes a core part of the disabled person’s life, shaping how they perceive their own identity and interact with the world at large. Disability is not typically caused by pathogens like illness is either, though some of them can lead to disability in certain cases. Physical injuries or mental trauma may also contribute to the development of a disability, and some people are born disabled due to their genetic makeup. With the rapid advancements made in scientific knowledge and technology, it is now possible to find some of these disabilities in unborn children, and with this extraordinary discovery comes an incredibly difficult ethical debate: is it morally right to abort children who would have to live with a disability if they were born?

Figure 1: Disability can inhibit many different parts of a person's life

Models of Disability: The Social Model and the Medical Model

The ability to sufficiently understand the moral debate of embryo selection first requires an understanding of what living with a disability is like. Though disability varies in the types of symptoms it presents, sociologists have formed numerous models to provide a framework for how the ways in which society addresses disability affect how the disabled person views and is affected by their condition. The most widely applicable models are the Social model and the Medical model. Each of them is vastly different in how they view disability and presents different methods for solving the problems disabled people face.

The Medical model assumes that the problems disabled people face are a result of their mental or physical impairment, and as such the best way to address disability is through medical or other treatment to try and minimize the symptoms of the disability (Brisenden, 1986). Though addressing the symptoms of the disability suggests it would provide the most benefit for the disabled person, the unique treatment the disabled person is subject to can have its own issues. Special needs schools are an excellent example of demonstrating this. By following the medical model in addressing the impairment, in this case typically a learning disability, special needs schooling provides a safe, controlled environment for disabled children to learn in.

Figure 2: A visual representation of the medical model

While tailoring an education towards the unique requirements of disabled children does make it easier for the children to participate in class and learn at their own pace, their exclusion from regular schooling does not go unnoticed. Being separated from their peers at an early age accelerates a feeling of ‘otherness’ in childhood, where the disabled children would understand the differences in their education not as a method of helping them, but as a signifier of their difference from able-bodied children (Grey, 2016). Disability is often a permanent part of someone’s life, so changes to how the disabled person views their own disability are hugely impactful on their mental health. Charitable campaigns for better treatment of disabled people are soon interpreted as acts of pity, and a way for others to feel good about themselves for treating a disabled person they view as lesser than them with benevolence. A negative view of one’s own disability then fuels a desire to suppress the disability’s symptoms, yet the necessity to rely on medical professionals for help in the medical model can come at the cost of the disabled person’s autonomy and independence, as their physician begins to manage a larger part of their life (Hughes & Paterson, 2010). While the Medical model is useful for minimizing the symptoms caused by the disability, it fails to consider what is truly best for the disabled person by separating the disability from the sufferer’s personal needs and desires.

The Social model takes a different approach. In contrast to the Medical model, which primarily views disability through the lens of the physician and their medical knowledge, the Social model was created by disabled people themselves to use in political discourse and fighting for civil rights in the 1970s and continues to be used for the same purpose to this day (Shakespeare, 2001). This model argues that disability is only a problem because society is built in a way that fails to accommodate for disabled people’s needs, and is, therefore, a mismatch between a person and their environment (Owens, 2014).

Continuing from the example of special needs schools, that was used to explain the Medical model, the Social model would suggest that the inequality between disabled and non-disabled children is caused not by the impairment of the disabled child, but by poor teaching methods in regular schools that fail to accommodate disabled children. Following the Social model, this issue would be best addressed without needing disabled children to be put into a separate environment. Using the latest to incorporate disabled people into wider society is a difficult task, but one that helps many to feel like their disability is not a fault of their own and does not require them to be separated from their peers, avoiding self-esteem unnecessary damage to self esteem.

Figure 3: A visual representation of the social model

Embryo Selection

Though the Social model suggests a possibility of a more optimistic future for disabled people, and the Medical model still has good intentions in helping people manage their condition, many of the negative consequences disability causes cannot be fixed. The only way to prevent these problems is to filter the disability out through the use of embryo selection. One argument for embryo selection being a benefit to society is that the detriment of living with a disability would pose too many problems in terms of the child’s quality of life, meaning that it would be better for the child if that life was not lived. While it can be argued that no one has the right or the means to judge an unborn child’s quality of life, it may also be said that having embryo selection as an available choice creates a genetic responsibility to use it for improving the overall quality of life within a generation (Lipkin & Rowley, 1974). In a society where natural resources continue to dwindle and there is an increasing sentiment of individualism in people needing to take care of themselves rather than being helped by the state, promoting self-sufficiency through embryo selection ensures there are fewer people born into a society they cannot adapt to.

Embryo selection is not an easy choice to make though, and even having the choice to use it or not has its disadvantages. Although the Social model argues that the integration of disabled people into wider society is achievable, sociologist Solomon Asch argues that embryo selection cannot exist simultaneously with a significant disabled community within the population. While time and money are funnelled into helping disabled people by creating easier physical access for them or providing support networks for them, these resources will be wasted once embryo selection is universally embraced and there is no longer a disabled population to care for (Asch, 2003). Additionally, the existence of embryo selection sends a message to living disabled people that a significant amount of the total population considers their lives not worth living, whether that is because their quality of life is perceived to be bad or because of the economic cost for building the appropriate facilities to help them manage their disability.

Figure 4: Should the parents be able to decide whether their potential child lives or dies?

There is no accepted way to determine who has the right to decide whether an unborn child should live or die simply based on the fact it has a predetermined disability, and the choice of using embryo selection is not guaranteed to be made with the child’s life in mind. Using Foucault’s theory of biopower, where human life is regulated through the public control of the population and the individual body, embryo selection might be used for preserving a healthy and efficient workforce (Foucault, 1975). Using it for this purpose poses a great danger for society, as the body would be controlled by the state and valued based on its productive capacity. As medical research continues to understand more and more about the human body, there may be more and more different traits that become apparent before a baby is born. Given that, it is impossible to accurately determine every individual’s quality of life from birth, there is no clear line on what other characteristics should be removed using embryo selection in the future.

Conclusion

The ideal way for disability to be managed by society remains a contested topic to this day. Prioritizing dealing with the symptoms of disability through the Medical model helps to provide environments that minimize the impact of said disability, while using the Social model to adjust existing spaces until they can sufficiently care for disabled people allows for a diverse yet inclusive society. Though the embryonic selection is useful for avoiding the strife that comes with living in a world that provides insufficient care for disabled people in the hopes of a better tomorrow, its presence compounds feelings of otherness in the existing disabled population, and the power it provides over controlling a population is a cause for concern for how it is or will be used. The ethical concerns of how best to treat disability in the present while considering how those choices influence future generations are not easily answered.

Bibliographical References

Asch, A. (2003). Disability Equality and Prenatal Testing: Contradictory or Compatible?. Florida State University Law Review, 30(2), 315-342.

Brisenden, S. (1986). Independent Living and the Medical Model of Disability. Disability, Handicap &Amp; Society, 1(2), 173-178. https://doi.org/10.1080/02674648666780171

Foucault, M. (1975). Society Must Be Defended. Lectures At The College De France.

Grey, F. (2016). Benevolent othering: Speaking Positively About Mental Health Service Users. Philosophy, Psychiatry, & Psychology, 23(3-4), 241-251. https://doi.org/10.1353/ppp.2016.0025

Hughes, B., & Paterson, K. (1997). The Social Model of Disability and the Disappearing Body: Towards a sociology of impairment. Disability & Society, 12(3), 325-340. https://doi.org/10.1080/09687599727209

Lipkin, M., & Rowley, P. (1974). Genetic responsibility: on choosing our children's genes. Plenum Press.

Owens, J. (2014). Exploring the critiques of the social model of disability: the transformative possibility of Arendt's notion of power. Sociology Of Health & Illness, 37(3), 385-403. https://doi.org/10.1111/1467-9566.12199

Shakespeare, T. (2001). The Social Model of Disability. The Disability Studies Reader, 266-273.

Visual References

Cover Image: DigitalArts. (2016). Disability throughout life [Image]. Retrieved 28 September 2022, from https://www.digitalartsonline.co.uk/features/illustration/dadu-shins-visual-narratives-of-disability-are-insightful-elegant/.

Figure 1: Esri. (2020). Disability can inhibit many different parts of a person's life [Image]. Retrieved 5 October 2022, from https://www.esri.com/arcgis-blog/products/arcgis-storymaps/constituent-engagement/building-an-accessible-product-our-journey-so-far/.

Figure 2: NeuroDiverCity. Figure 2: A visual representation of the medical model [Image]. Retrieved 28 September 2022, from https://www.neurodivercitysg.com/medical-model-vs-social-model.html.

Figure 3: Inclusion London. A visual representation of the social model [Image]. Retrieved 28 September 2022, from https://www.inclusionlondon.org.uk/about-us/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/.

Figure 4: Stat News. (2017). Should the parents be able to decide whether their potential child lives or dies? [Image]. Retrieved 28 September 2022, from https://www.statnews.com/2017/10/23/ivf-embryo-genetic-testing/.