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On Standard View of Disability. An epistemic and ethical issue

Veröffentlicht am 31. Januar 2024

Von Lautaro Leani

Ableism can be defined as the social production of a specific type of self and body as the perfect, species-typical and therefore essential and fully human (F. K. Campbell, 2001).  This network of beliefs, processes and practices privileges certain individual abilities related to productivity and competitiveness, at the expense of others. The completeness, functionality and appearance of able-bodiedness are also established as the desirable and natural states (Maldonado Ramirez, 2019). In consequence, its physical, psychological and sensorial standard „leads to a labelling of real or perceived deviations from or lack of ‚essential‘ abilities as a diminished state of being“ (Wolbring, 2008). One of the key elements of ableism is the belief that disability “is inherently negative and should the opportunity present itself, be ameliorated, cured or indeed eliminated“ (F. K. Campbell, 2008, p. 74). In the field of bioethics, this commonsense belief has been identified as the „standard view of disability“ (SVD).

Here, I will examine the SVD to identify some of its epistemic and ethical problems in bioethical discussions by employing the tools of disability studies and crip theory. I follow Campbell and Stramondo (2017) to conceive disability by ostension: an umbrella term that encompasses conditions that have been categorised as disabilities or impairments, such as „Down syndrome, cerebral palsy, achondroplasia, spina bifida, autism, blindness, deafness, paraplegia, and quadriplegia“ (p. 152). This general delimitation is useful for further discussion, as it „does not settle, by definitional fiat, what the relationship between disability and well-being is“ (p. 153). I choose not to inquire into the different types of disabilities because my focus is on the operation of ableist logic and not on the effects on specific individuals.

What about the Standard View of Disability?

In bioethical argumentation, the SVD acquires specific connotations, given that it is framed in specific discussions about the quality of life of people and the ethical and public health decisions that tend to maximise or diminish it. In short, the SVD is based on the idea that disability considerably and invariably worsens the quality of life of the person who has it (Amundson, 2005). In this context, quality of life (QOL) refers to the well-being of groups of people that can be measurable or assessable in different ways to facilitate quantitative comparison and decision-making (Wasserman et al., 2016). These measurements usually link an individual’s well-being to his or her individual capacity and efficiency to perform daily activities (feeding, dressing or moving around), to be healthy or to be free of chronic discomfort or pain. These links have been expressed in different measurement tools that seek to capture the individual QOL, such as disability-adjusted life years, quality-adjusted life years, the Barthel index for activities of daily life, among others.

While the factors that reduce a person’s QOL are diverse and some of these may be contingently related to disability, such as poverty or social exclusion, under the SVD, disability is considered one of the main factors that reduce QOL, since it is regarded as a factor in itself, isolated from its social determinants. Hence, many public intellectuals[1] are in favour of „the reduction or elimination of disability from human experience“ (Campbell and Stramondo, 2017).

Able-bodied Perspective as the Norm

The SVD has been nourished by biomedical conceptions of the human being which distinguishes between bodies with normal and abnormal functions (Boorse, 1977). Under this distinction, the biomedical literature has positioned disability, in exclusively biological terms, on the side of functional abnormality. Admunson argues that this distinction, rather than describing real aspects of the natural world, „reflects social strategies for the management of human diversity“ (2005, p. 107). Supposedly objective measures of healthy levels of physical activity and mobility „privilege typical modes of function rather than attending to the level of function and evaluating the accessibility of the built environment rather than bodily capacities“ (Wieseler, 2016, p. 95).

Thus, given that a person’s QOL is measured based on the way and degree of efficiency in which able-bodied individuals carry out their daily activities, the absence or impairment of any of the faculties that allow them to carry them out, implies a decrease in QOL. In this sense, the SVD assumes an „able-bodied perspective“ (McRuer, 2002) as the neutral point of view to judge the QOL and the way of performing the activities of all people. An example of this is the reasoning of Singer, who, instead of attending to the testimony of people with disabilities, proposes to give „equal consideration to the interests of those with disabilities, and empathetically imagining ourselves [able-bodied people] in their situation“ (Singer, 1993, 53). Thus, the able-bodied perspective is reinforced by „a multitude of practices, representations and values that act in the production of the normative body […] as the only possible alternative of functioning“ (Toboso-Martín, 2017, 53). From a queer-crip perspective (García-Santesmases, 2017; Leani, 2023), this set of practices, representations and values has been called „compulsory able-bodiedness“, a regulative ideal that assumes as obvious that an able-bodied perspective and life is preferable for all (McRuer, 2002). The assumption of this social aspiration is informed by power dynamics that establish a proportional relationship between health, normality, and an „able“ and „self-sufficient“ body, and care and social support requirements as signs of weakness (Leani and Mastroleo, 2023).

However, separating the bio-psychic attributes from the social conditions to assess its impact on QOL is not only difficult in practice but also problematic in two relevant philosophical senses. First, it is epistemically imprecise since it runs the risk of assuming social effects as if they were biological. Second, it is ethically questionable since it may culminate in unjustified biomedical decisions. I will deal with these issues in the following sections.

An Epistemic Issue: Systematic Bias

In public policy decisions, the oversimplified assessment of the individual well-being of the uniform QOL measures could be acceptable. However, „the worry when these judgements are applied to people with disabilities is not oversimplification so much as systematic bias” (Wasserman et. al, 2016, 14). Evidence about the direct relationship between the presence of disability and the low quality of life expressed in SVD is inconclusive. Social and subjective living conditions considerably determine QOL (Castro Durán et al., 2016; Wasserman et al., 2016). Empirical evidence shows that in appropriate environments people with disabilities have rated their quality of life similarly or just below the average of the general population (Escajadillo Davalos et al., 2020; Verdugo et al., 2012; Wieseler, 2020).

Wider Range of Possibilities, Higher Quality of Life?

According to Wieseler (2020), SVD tends to mistakenly identify disability with deprivation, pain, and even illness. Those who argue that disability causes suffering because it deprives them of the enjoyment of certain goods of life, such as „appreciating a picture“ in the case of blindness, fail to consider that such people enjoy multiple other goods that make their lives equally desirable (Stramondo and Campbell, 2020)[2]. The choice between which goods are important and which ones are not, is influenced by cultural and contextual factors. To accuse disability of causing suffering by depriving some of these is highly biased.

Moreover, conceptions that argue for the need of a „normal“ wide range of opportunities for a high quality of life fail in at least two ways (Amundson, 2005). First, because much of the loss of opportunities is not due to having or not having a disability, but to the social environment and the stigma attached to atypical ways of performing activities, such as communicating by sign language or reading Braille. Second, because it is wrong to consider that a wide range of activities considered „normal“ must be available to maximise a person’s quality of life. Not only because that range is informed by ableist biases of what and how activities should be performed, but also because in cases that are not related to disability, we would not be willing to claim that we are dealing with a worsened quality of life. It would be wrong to argue, for example, that a cis-male’s quality of life is worsened because he cannot bear children.

Biological Reductionism

Finally, the association of disability with pain and disease is contingent upon each specific condition. Many disabilities do not involve pain or associated diseases (Campbell and Stramondo, 2017; Wasserman et al., 2016). Even in cases where this happens, medical treatments in combination with appropriate environments often allow for an acceptable transition. Furthermore, „the assumption that physical pain is neatly and directly correlated with reduction in well-being is a crude oversimplification“ (Barnes, 2016, p. 74). Even so, it is plausible to consider that pain, mainly severe and chronic, is an acceptable variable for assessing a person’s quality of life. In addition, the acquisition of a disability often results in changes, sometimes profound, in a person’s life, so that it may affect the quality of life temporarily until the person and the environment can adapt. However, the generalisations of SVD do not assess these influences but reduce disabilities to biological conditions, consider them as socially isolated determinant factors and take exceptional cases as paradigmatic for their value judgements.

An Ethical Issue: Injustice and Discrimination

SVD can lead to epistemic injustice, devaluation of the lives of certain people and distributive injustice in a variety of biomedical practices and public health decisions. Among them are the allocation of funds for genetic research, the allocation of scarce health resources, prenatal screening and selective abortion, medically assisted death and surgical contraception. According to Wieseler, when SVD generalises the lower quality of life of people with disabilities, it obstructs the reception of the person’s own testimony, which constitutes a form of epistemic injustice (Wieseler 2016). Detecting it becomes relevant in practices where autonomy and consent are fundamental, such as in making decisions about possible treatments, surgical interventions, institutionalisation, or even the cessation of life-saving treatment. An example of this is the case of Jane Campbell, a British disability rights activist and advisor with spinal muscular atrophy who had been hospitalised for severe pneumonia in 2003. She writes that „on two separate occasions, doctors told me they assumed that if I fell unconscious I wouldn’t want to be given life-saving treatment“ (J. Campbell, 2003).

On the other hand, Arnau Ripollés (2019) argues that selective abortion based on disability and forced sterilisation of people with disabilities, mainly cis women, is nurtured by perspectives that understand disability as something negative that must be reduced or eliminated from the human experience. Under the assumption of low quality of life as an inescapable prediction, selective abortion based on disability incurs ableist biases and reinforces the idea that it is better to prevent life rather than live it with a disability. This is certainly not a sufficient reason to prohibit selective abortion based on all cases of disability, but it does require an extra effort on the part of healthcare providers to ensure that as much non-ableist information about the disability in question as possible is provided. In a similar vein, ableist assumptions have allowed non-consensual forced sterilisations on persons with disabilities at the request of family members or legal representatives. This is the case of Sonia, a deaf Argentinian, who in 2017 denounced that years ago her fallopian tubes had been tied without her consent (Asociación Civil por la Igualdad y la Justicia, 2022).

The Right to Survive

In the allocation of scarce health resources, the SVD tends to generate an ethically unjustified distribution, resulting in discrimination against some people with disabilities. During COVID-19, the use of triage criteria related to disability, quality of life and „functional status“ led to the disqualification of certain social groups as possible candidates for access to potentially life-saving health resources (Leani and Mastroleo, 2023). For instance, the German Federal Constitutional Court (2021) identified these biases in national guidelines and decided in favour of the people with disabilities claim.

Finally, in medically assisted death, SVD may involve a biological reductionism of the person’s suffering without exploring other alternatives to death related to the contingent living conditions. For example, regarding the mention of „disabling suffering“ as a sufficient requirement in the Spanish Euthanasia Law, the Spanish Committee of Representatives of Persons with Disabilities (CERMI) pointed out that the expression ‚disabling‘ „unnecessarily evokes situations of disability (…) [and implies] specific indications that singularise them as a social group especially indicated for euthanasia due to their personal situation or condition“ (Europa Press, 2021).

It is for these reasons that the reduction of disability to a medical condition fails to recognize the impact of power relations between disabled and non-disabled people and ableist oppression in the QOL of people. Thus, “disability is medicalized and de-politicized” (Wieseler, 2016, p. 97).

Final Remarks

In this contribution, I have attempted to show that the generalisations proposed by the Standard View of Disability are wrong and lead to unjust decisions. However, opposing the SVD does not imply committing to the opposite belief that disabilities never negatively affect a person’s QOL. Rather, it implies recognizing the challenges of determining to what extent contingent life conditions and social determinants are influencing low QOL and how to modify them. To this end, it will be relevant to identify the influence of compulsory able-bodiedness on self-perception and medical perception, as well as to reconfigure the social place of disability prevention and treatment. Thus, although sometimes people with disabilities do see their quality of life diminished, rejecting the generalisations of SVD would allow us to glimpse cases related to environmental conditions, social attitudes, or own expectations or attitudes where it is possible to recover the quality of life that is assumed to have been lost since the beginning.

© Lautaro Leani

References

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[1] See Davis (2009), Kahane and Savulescu (2012), or Singer (2009).
[2] Campbell et al. (2021) analyse the compatibility between four ways of conceiving the goods of life (happiness, rewarding relationships, knowledge, achievement) and four types of disability (sensory, mobility, intellectual, and social). They find that, „with the exception of very severe intellectual disability, each of the four disability types is strongly compatible with three or four of the goods of life“ (p. 720).


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