Conceptualizing Disability: An Endorsement of the Ecological Perspective

1 1 Conceptualizing Disability: An Endorsement of the Ecological Perspective This paper endorses the ecological model of disability (EMD), and asserts that it should replace the paradigm social model (SM) in existing disability legislation and in the disability rights movement. This research argues that contemporary classifications of disability connote marginality and stigma because of widely shared negative perceptions of disability that stem primarily from the medical model (MM). This is unwarranted and cruel. This paper shows that the SM formed as a binary counter to reject these negative perceptions from the MM but its account inadequately defines disability. To remedy this problem, I recommend the adoption of the EMD because its definition entails neutral connotations of disability which, allows us to celebrate disability as an identity by recognizing that it is not a problem in need of a cure. The model I propose promotes a broader definition of disability because it views “disabledness/ableness” as something malleable or potentially modifiable. This research does not intend to subscribe to a platonic definition or model of disability, it simply postulates that the EMD should replace the SM. The first section shows that the medical model (MM) contributes to a crucial source of stigma for people with disabilities. I begin by describing how the MM defines disability. Next, I describe Foucault’s notion of power/knowledge. I argue that medical professionals deploy the MM by acting as agents of power in power/knowledge relationships. I use Linda Ward to show that the information passed on in these relationships are not necessarily the biological truths we tend to accept them as. The goal of this section is to show that the MM inadequately defines disability, yet its account dominates contemporary social perceptions of disability. The following section begins by briefly explicating the SM. The SM formed as a direct response to the MM. In this section, my main concern with the SM is that it represents a form of 2 2 what Miranda Fricker calls testimonial injustice because of its use of passive identity power. I begin by explaining testimonial injustice in terms of active and passive identity power. I distinguish testimonial injustice from testimonial exchange to show that the SM does not constitute active identity power. I then show that the SM embodies passive identity power. The aim of this section is to show that the SM silences the experiences of people with impairment by ignoring impairment reality. The next section explicates the EMD, the model I endorse in this paper. I focus specifically on highlighting the ways this model more broadly construes disability than the SM. That is, because it incorporates all three levels of analysis—micro, meso, and macro –which, the SM does not do. I move my argument forward by articulating that the EMD allows for neutral connotations of disability unlike the SM because it maintains that disability is a negative identity. This comparison provides a further critique of the SM, that is, it values the ordinary citizen. From this explanation, I provide a possible objection to the EMD but reject it by focusing on how the EMD distinguishes disability in terms of physical, cognitive, and sensory impairment and necessarily disabling experiences. The following section provides a case study to hypothetically show the impact of the EMD in law. I apply the accounts of disability in the SM and the EMD to the Supreme Court Case (SCOTUS) of Sutton v. United States Airlines, and provide possible rulings on the case from the perspective of both models. I find that the SM’s definition is ambiguous which, can lead to legal misinterpretations of defining disability status. I claim the definition of disability in the EMD would allow for the plaintiffs to obtain disability status because of its unequivocally broad construal of disability. This is important to help dismantle the viewpoint that disability must be 3 3 something that substantially limits one’s life (i.e. a negative definition of disability as in the MM and the SM). I provide an objection section. The objection comes from Julian Savulescu and Guy Kahane’s “Welfarist Account of Disability”. I use their proposed model as an objection because it has overlap with the EMD. The welfarist account (WA) argues that disability inherently reduces the well-being of people with disabilities (2001, 51). I start by describing how Savulescu and Kahane arrive at the definition of disability in the WA. I begin my counterargument by showing that the WA’s definition of disability is a defective definition because it is too broad and too narrow. The WA does not tell us what disability actually is though that is clearly its intention. I conclude this section by maintaining the EMD and divorcing it from the possibility of being a too broad and too narrow definition. This paper concludes that the EMD should replace the SM and become the paradigm model in existing disability legislation and in the disability rights movement. I re-iterate that egregious attempts to characterize, classify, and understand disability as a personal tragedy can stem from the MM. I affirm that the SM was useful in recognizing the unwarranted notions and presuppositions of the MM but, the SM is in need of replacement because it negatively defines disability and denies impairment reality. The EMD is the replacement that dismantles negative notions of disability while also allowing for the celebration of disability and that is because it is a helpful epistemic tool in helping us understand disability and impairment differently. I maintain that the definition in the EMD would have impacted the SCOTUS ruling of Sutton v. United States Airlines. I end by maintaining my thesis, that is, that existing disability legislation and the disability rights movement should amend or replace their current definition of disability with the EMD. 4 4 I. An Unwarranted Epistemology of Disability: The Medical Model As aforementioned, this research argues that society perceives disability as something that is necessarily something negative which, is unwarranted and cruel. Here, I articulate that an important source of that stigma comes from the medical model (MM). In other words, I claim that the MM structures many negative societal perceptions of disability. I begin by describing the MM. Next, I articulate Foucault’s concept of power/knowledge. The point of using Foucault’s concept is to link it to the MM, that is, to reveal that the MM is deployed by agents in power and subsequently passed off as biological truths. I use prenatal genetic testing and genetic counselling from medical professionals to support my argument. I conclude this section by showing how these practices illustrate the influence the MM has on society. The goal of this section is to reveal that the MM inadequately defines disability and yet, it is passed off as accepted scientific truth. Additionally, it aims to show that we ought to challenge the trust placed in medical professionals as “knowers” of the experiences of disability because by deploying the MM as scientific truths, we are contributing to the unwarranted stigma attached to people with disabilities. The MM assumes that disability is a defective physical, cognitive, and/or sensory trait located within the individual that is responsible for creating a disability (Government of Canada 2003, 5). This model view disability in terms of abnormality and personal tragedy (6). It divorces impairment from social life and treats disability as if it is a problem for the individual that requires a fix or a cure (12). Additionally, people with disabilities will at some point become dependent on medical professionals or technologies so that they can come closer to species typical functioning (Sullivan, 2011). Disability is considered as something that can reduce quality of life and well-being (ibid). Furthermore, if a person with an incurable impairment faces 5 5 a significant reduction in quality of life or well-being, then it would be considered acceptable to euthanize this individual (ibid). However, the key component of the MM is, as aforementioned: disability is located within the individual and is created by cognitive, physical, or sensory defects or abnormalities that hinder species typical functioning. 1.1) The Diagram Below Illustrates the Medical Model (MM) This diagram visually represents the MM. The boxes labelled as defects (physical, cognitive, and sensory) all point to the disabled individual. These defects are responsible in producing the disabled individual. Notice how this model excludes the possibility that other factors could govern or create disability, such as social or political conditions that stem from environmental and attitudinal constructs about disability in and of itself. This section aims to show that ignoring this possibility is problematic. Now that I have articulated the MM’s account of disability, I move on to explain Foucault’s notion of power/knowledge. Foucault’s concept aims to reveal the phenomena of knowledge itself (Foucault 1976, 83). Foucault argues that knowledge is generated or constructed within regimes of power and is distributed as a tool of power (O’Farrell 2005, 105). Disabled Individual Cognitive Cognitive Cognitive Cognitive Cognitive Cognitive Cognitive Cognitive DefectsDefects Defects Sensory Sensory Sensory Sensory Sensory DefectsDefects Defects Physical Physical Physical Physical Physical DefectsDefects Defects Defects6 6 In other words, all knowledge is dependent upon networks of power where the exercise of such power produces or generates knowledge—to have power is to have the ability to create knowledge, otherwise known as truths. This concept is salient in revealing how the MM deploys knowledge that we unequivocally understand as “biological realities” or truths. That is, to the extent where power defines the axioms (basic truths) and that this dictates how people understand these defined axioms. An example of this can be when the agent in power defined the world as flat. This form of power created a knowledge which constrained and controlled the people in the world to exclude the possibility that the earth could be something else than flat. In what follows, I link Foucault’s concept of power/knowledge to the MM to show that some negative conceptions of the experience of disability are not necessarily based on the biological or scientific “truths” they tend to be passed off as. Here, I point to medical professionals who deploy the MM as a biological reality. They are in a position to do so because they act as the agent of power in the relationships between patient and doctor. Medical professionals have the possibility to be an agent of power because of the trust we place in them for their capabilities as “knowers” of disability. One prominent example of this unquestioning adherence can be seen in existing medical practices where medical professionals may advise parents to consider abortion in the case of a discovery of a disability (typically for trisomy 21, the condition that causes Down syndrome) via prenatal testing (Parens and Asch 2003). These about-to-be parents are informed by medical professionals, who supposedly provide a “neutral view” about what life would be like for that child (Saxton 1997). Often, these viewpoints are expressed in terms of the struggles the child would face in their lifetime (ibid). This places the medical professional in a position to make influential assumptions that are unwarranted because they can claim what the typical life would be like for a person with disability X without really 7 7 knowing whether or not these struggles are true in every case. These “truths” (or biological realities) can greatly contribute to the negative perceptions of people with disabilities, and the mere existence of these technologies can exhibit a form of discrimination against people with disabilities. The following paragraph shows how people with learning difficulties (like Down syndrome) challenge a preconceived notion—typically passed off as a truth—about their cognitive capabilities. This notion is that people with cognitive impairments that cause learning difficulties such as Down syndrome will face several difficulties in life because the world is just too complex for them1 (Ward 2005). In “Whose Right to Choose? The New Genetics, Prenatal Testing and People with Learning Difficulties”, Linda Ward vividly articulates one major drawback of existing prenatal tests that socially accept selective abortion on the basis of disability (2005). Ward, for the reasons I have already touched on, explains how the proliferation of prenatal tests stem from what she calls “value free” truths about the overall negativity of the experience of an impairment (117). Ward articulates how this discourse on this subject is dominated by medical professionals, scientists, and health economists (119).2 She challenges one of the major “value free” truths expressed about people with learning difficulties that society (as well as the disability rights movement) accepts. That is, people with learning difficulties struggle to understand the complexity of the world around them because they have low levels of literacy and lower levels of cognitive and verbal skills (121). To challenge this generally accepted “truth”, she points to the 1 At this point it should be clear that the MM views trisomy 21—the trait that causes Down syndrome—to be responsible for the reduction of species typical functioning in terms of cognitive capability like the ability to understand social context. 2 Similar to Ward’s argument, Parens and Asch in “The Disability Rights Critique of Prenatal Genetic Testing” articulate that a common debate in bioethics is about what life is actually like for people with disabilities (2003, 67). They argue that notions about the experiences for people with disabilities stem from misinformation that medical professionals produce and pass off as a “biological reality” (66-7). Parens and Asch argue that the knowledge passed off by these professionals are not really biological realities but rather opinions about disability that are based on the way we have socially constructed disability and that if we integrated people with disabilities in society, that these practices would not be necessary (67-9). 8 8 developments of a two-day workshop held in the United Kingdom (UK) that engaged topics like prenatal testing (ibid). This conference discussed these issues (among several others) with eight people with learning difficulties (ibid). The first workshop focused on the differences between people with learning difficulties and the second focused on choices about pregnancy (122). The first engaged questions about what makes people different and the second talked about pregnancy and whether a mother should choose to have a child if they child would be like them (123). Ward articulates that both workshops were very successful, but I find that the discussions of the second workshop proved a very important point, that is people with learning difficulties such as Down syndrome (a cognitive impairment that is commonly tested for in prenatal practices) understand the implications of these tests and thus understands how society values them and people with Down syndrome overall. Ward states that one individual with Down syndrome claimed “the fetus with a learning disability should be aborted because I don’t think it should be born into a cruel world” and that another asserted “Scientists should find the gene that makes people pick on those who are different. Then our lives would be better” (122-4). Indeed, these statements show that people with learning difficulties can fully understand the implications of existing medical practices. That is, prenatal technologies exist to legally allow (and arguably encourage) selective abortion of a fetus that would grow up to share something in common with people with learning difficulties and that abortion is socially acceptable in this case because of this common point. Thus, people with learning difficulties can have a full grasp of the social context of disability. This shows that not only is the notion that people with learning difficulties cannot understand the world around them is false but that they can also be aware of where they stand in society. 9 9 The very existence of these available practices elucidates the influence the MM has over us. Its influence is seen in the fact that these existing practices presuppose that living a life with a disability like Down syndrome would be worse than being dead—it is considered too much of a tragedy for someone to have to endure living a life with a disability that it would be better if they were never even born. Melinda Hall in “Reconciling the Disability Critique and Reproductive Liberty” reinforces the disability critique— that negative genetic selection is ablest and perpetuates the stigma attached for people with perceived disabilities (2013, 125-7). She argues in favor of the disability critique that calls into the social motivations for prenatal testing and then selective abortion on the basis of a positive test (125). She finds that these social motivations stem from “misinformation […] swayed by the medical model of disability, and expresses a hurtful message to persons already existing with targeted disabilities” (126). The MM inadequately defines disability because it contributes to the unwarranted cruelty for people with disabilities. Yet, this model still dominates conceptions of disability through its manifestation in still legal prenatal genetic practices, through the misinformation passed on from medical professionals to about-to-be parents as supposed neutral scientific truths, and through the overall understanding of impairment as something that reduces well-being and quality of life. II. The Social Model and Testimonial Injustice This section begins by briefly explicating the social model (SM). In my explanation of the SM, I show that it formed as a counter to the medical model (MM). Next, I explain Miranda Fricker’s concept of testimonial injustice. The goal here is to show that the SM embodies testimonial injustice which gives reason to replace this model. I claim that we can object to the SM on the grounds that it constitutes testimonial injustice through its use of passive identity power. I first claim that the SM does not deploy active identity power but rather passive. I distinguish active identity power from political and social resistance to illustrate the difference 10 10 between testimonial injustice and testimonial exchange. An objection of the SM is that it can be exclusionary, because it deploys a passive use of identity power by ignoring impairment reality of people with impairment(s). The SM formed in Britain by British disability activist, Michael Oliver; this model was realized in the mid-seventies by the Union of Physically Impaired Against Segregation (UPIAS), as a direct rejection of the MM (Oliver 2004). The UPIAS defines disability as follows “the disadvantage or restriction of activity caused by a contemporary social organization which takes little or no account of people who have impairments and thus excludes them from mainstream social activities” (UPIAS 1976, 20). In other words, it supports the notion that the root of stigma attached to the classification of disability stems from socio-political constructions (Kumari Campbell 2011, 122). It blames society for disabling people with impairment. The SM’s account of disability (as per the UPIAS) finds that it is not just the societal prejudices and disabling environments that marginalize and stigmatize people with impairments, but also, the overall de-valuation of people with impairment(s). The SM follows a binary dualism by distinguishing disability from impairment (Hughes, 78). As aforementioned, disability is (in large part) the result of societal injustice induced and perpetuated by unaccommodating social and physical environments (ibid). Impairment is merely a physical, cognitive, or sensory difference (located within the individual) that deviates from the species norm (e.g. an individual with an amputated leg) (Government of Canada 2003, 21). Inhospitable conditions yield negative connotations of the classification of disability which allows for the overall de-valuation of people with impairments. In other words, these conditions create and perpetuate the negative societal attitudes towards people with disability. Not only do these factors physically restrict people with disability but they perpetuate a cycle of systematic oppression, social isolation and discrimination for people with physical and cognitive impairments (Davis 2010). Thus, the central tenet of the SM is to shift the focus from only looking at the individual as a determinant of disability to view disability from a social-constructionist stance (Government of Canada, 24). Another central tenet of the SM is to realize 11 11 that impairments are a part of the human condition (meaning that it can happen to anyone) and that society has an obligation to accommodate people with impairments. In other words, we must change the social environment instead of medicalizing the “abnormal” body. 1.2) The Diagram Below Illustrates the Social Model (SM) This diagram illustrates the SM. As aforementioned, this model contrasts the MM because it blames society for creating disability instead of placing blame on the individual. Hence, this diagram shows that the environments as well as outside political and social forces are responsible in the creation of disability. It still maintains that disability is something negative or undesirable, recall that in the SM’s distinction between disability and impairment, disability is the result of the stigma for people with impairments. Now that I have explicated the SM and its primary tenets, I illustrate Miranda Fricker’s concept of testimonial injustice, and then apply the SM to this concept. In Miranda Fricker’s book Epistemic Injustice and the Power and Ethics of Knowing, she articulates that testimonial injustice occurs when “prejudice causes a hearer to give a deflated level of credibility to a speaker’s word” (2010, 1). She argues that in order to understand the central or cause of testimonial injustice, we must understand the “nature of social power” which, she calls identity power (9). For Fricker, identity power is at work when there are “shared imaginative conceptions DisabilityDisabilityDisabilityDisability DisabilityDisabilityDisabilityDisabilityDisability Social Social Social Social Barriers UnhospitableUnhospitableUnhospitableUnhospitableUnhospitableUnhospitableUnhospitableUnhospitableUnhospitable UnhospitableUnhospitableEnvironmentEnvironmentEnvironmentEnvironmentEnvironment EnvironmentEnvironmentEnvironment Environment Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Attitudinal Beliefs Beliefs12 12 of social identity” (14). Identity power is not a physical entity or force, but rather is exercised discursively. She claims that identity power can be deployed actively or passively. To elucidate active identity power, she points to a man who uses his gender (the mere fact that he is a man) to influence a woman’s action(s) to defer to his word (ibid). She claims that he may patronize her and he would face no consequences because he is a man and she is a woman (ibid). He silences her by exercising his identity power that a man has over a woman; the woman is irrational whereas the man is rational (ibid). Contrarily, her example of passive identity power can be when a man does not even need to influence a woman’s action by virtue of him being a man and she being a woman (15). To use the same scenario, she may not even raise her voice because she is a woman and he is a man and thus, she understands her “place” in relation to the man in the larger social context (ibid). The following paragraph moves on to the discussion that the SM constitutes passive identity power. Here I claim that the SM does not use active identity power. The SM is merely an example of testimonial exchange, that is, a dispute on what it means to be disabled. To articulate this point, I first turn to Tricia Rose’s concept of the “political race.” She states that political race is: “Not about identity politics in the traditional sense… it is about doing, not about being. Rather than subscribing to the black and white binary, the term “political race” links the distribution of resources and the ways in which the distributions are clearly radicalized in an unequal way” (O’Brien, 19). This concept is salient because the SM can be seen as a tool aiming at dismantling not the political race but the political bodied—that is the forces that continue to perpetuate an ablest society as well as ablest beliefs (not to be confused with merely the able-bodied). It is crucial though to divorce active identity power from political and social resistance to an exercised form unwarranted power. The disability rights movements champion the SM precisely because it reveals that the identity they are perceived to have—that is a negative identity or as Kumari Campbell calls it, a “negative ontology”—is rooted in socio-political constructs (118). They use disability as an identity to reveal that the societal conceptions of people with impairment ought 13 13 to be replaced with the disability rights movement’s collective account of disability—that is, society is to be blamed, not the individual. In other words, societal conceptions that stem from the MM inaccurately define disability and the disability rights movement accurately defines it. The disability rights movement uses the SM as a form of political resistance to illustrate what they think is an adequate representation of their social worth. This is merely an account of testimonial exchange because they are not using the fact that they are disabled to get people to defer to their word. Rather, they aim to show the cruelty imposed on the impaired and the associated definition of disabled persons by society and for this reason, people should defer to their word. At this point it should be clear that the SM does not exercise an active form of identity power. Here, I claim that the SM’s binary distinction of disability and impairment constitutes passive identity power. If we were to imagine a scenario where the SM achieved its social and political end, we could understand the implications it has on people with impairments. This society is a virtually accommodating utopia free of societal prejudices of impairment, there are no disabled people just people who have impairments. The SM, by way of silencing the political-bodied, has consequentially enacted a passive form of identity power and it has the result of imposing passive identity power on people with impairment. That is, their argument that societal injustice and negative preconceived notions of impairment are the only causes of disability forecloses the possibility that factors independent of societal injustice can contribute to a diminishment in well-being and quality of life. However, people with impairment like debilitating pain or chronic fatigue would still experience symptoms caused by their impairment regardless of the way society is constructed. This would exclude the possibility for people with impairment to have their impairment understood as a possibly limiting or painful reality. For example, imagine a verbal exchange at a disability rights protest where one person confronts another about their experience of debilitating pain caused by their impairment. The individual may choose to ignore the testimony of the individual on the basis that what really causes the pain is the fact that society disables them. That person would have been in a position to ignore the 14 14 person who experiences debilitating pain because the SM denies impairment reality by merely arguing that the downside of being disabled comes from societal injustice. III. The Ecological Model of Disability: An Interactionist Account In this section, I aim to articulate the ecological model of disability (EMD). The EMD is the model I endorse in this paper. I argue that its definition should replace the SM in existing disability legislation and in disability rights movements because it allows for neutral connotations of disability and broadly construes disability. I focus especially on how the EMD incorporates a micro, meso, and, macro level of analysis which is the reason for why it more broadly construes disability than the SM. I conclude by elucidating a key benefit of the EMD, that is, it allows for neutral connotations of disability juxtaposed the SM which, views disability as negative. I do provide a possible objection to the EMD but reject it by divorcing disabling experiences from disability. The EMD rejects the impairment and disability distinction (as claimed in the SM). It views disability on a spectrum where both ability and disability are not inherent to the individual but are shaped by the way the individual interacts with their environment. Human Resources and Skills Development Canada define this model as “an interaction of three kinds of factors: personal factors (micro), life habits (meso) and environmental factors (macro). This model provides a social constructionist stance that suggests that disability is a term that is malleable and potentially modifiable. For example, if someone with 20/20 vision (an exemplar of someone with normal functioning vision) cannot examine bacteria on their own, the addition of a microscope would create an ‘ability’. Contrarily, if a person with the same vision is placed in a room and all the lights are turned off, then the lack of light creates a ‘disability’. Thus, the ability or disability is not inherent to the individual or the environment but rather how the environment interacts with 15 15 the individual in creating enabling/disabling experiences. This interactionist approach highlights the importance of individual, environmental, and institutional resources without labeling physical or cognitive impairments as universally disabling. On these grounds, the EMD can be seen as a more inclusive model of disability than the SM because it recognizes that disability is not just merely the result of societal injustice imposed on top of impairment. 1.3) The Diagram Below Illustrates the Ecological Model of Disability (EMD) The overlapping parts in each section are the specific disabling/enabling factors. It should be noted here that the enabling/disabling factors need not to apply in all three level of analyses for an experience to be enabling or disabling. The enabling/disabling factors could apply to the environment (macro) and life habits (meso) without incorporating the personal factors (micro) (Wise 2016). Contrarily, it is possible for one level to impact another level. For example, stigma associated with disability could be viewed as a disabling product of the macro level that stems from unwarranted notions that physiological differences are valid determinants of a valued life. In this example, the macro’s widespread influence can lead people to believe that their lives are Environment Environment Environment Environment Environment (macro) (macro) (macro)(macro) Personal Personal Personal (micro) (micro) Life Habits Life Habits Life Habits (meso) (meso) (meso)16 16 of less value hence the macro’s influence over the micro. I would like to note here that a key component of the EMD is that it incorporates the individual’s environment and the way the individual acts into determining “ableness” and “disabledness”. It is important to realize that the environment is not only restricted to merely a societal component. Rather, it incorporates social determinants of health that determine quality of life and well-being. These include physical, economical, and political components and each of these components are malleable or potentially modifiable in ways that can control either enabling or disabling experiences. Now that I have laid out the EMD, I now briefly compare and contrast the EMD with the SM to assess their degree of impact—specifically at the micro, meso, and macro levels. This allows us to visualize the key difference I am trying to draw out between these two models. The micro levels of disability can be understood as pertaining to the individual, specifically the personal attributes of a given person. The micro level is embedded in the meso level which refers to an individual’s environment that is shaped by their life habits; this includes but is not limited to; institutional policies and practices as well as communal factors like how accessible or accommodating a community is. Lastly is the macro level. The meso level is embedded in the macro. Macro level factors refer explicitly to the larger environment. A broad definition of disability should incorporate all three of these factors. The SM incorporates only the micro and macro. It examines the individual (the micro) through their insertion and integration in the macro level (the person in relation with society). The EMD incorporates all three aspects–the individual is examined in terms of the environment, the community, and the impacts institutional policies and practices have on that individual. By assessing how these level of analyses (micro, meso, and macro) can shape disabling/enabling experiences, the EMD allows for the possibility to contribute to human flourishing. It contributes 17 17 to human flourishing because it focuses on how disability/ability interacts with the individual which exposes the ways in which these level of analyses contributes to the overall experience for the individual. If we were to imagine a scenario in which the SM and the EMD were to pick out a disability, the SM would find that for example, a person in a wheelchair would be disabled when there is no ramp. Notice how in both the MM and SM models, they both acknowledge interactions of people with impairments but they focus on different causal reasons for the negative creation of disability, the former model focuses on the abnormal body whereas the latter focuses on the unhospitable and disabling society. This is problematic because the SM still views disability as something negative. It merely shifts the blame from one extreme to another. If the SM achieves its end goal of creating a hospitable environment for all, it would imply that the concept of disability would no longer exist. There would only be people with impairments but it would not matter because they would have accommodations for them. The SM aims to create a society in which everyone is ordinary. It takes away any possibility of allowing one to celebrate disability by not being ordinary. The EMD however, would recognize that the person in the wheelchair embodies an exemplar of disability but would not find anything necessarily negative about the situation of the person in the wheelchair. Rather, the EMD would focus on the ways in which the person with the disability interacts with the levels of analyses (micro, meso, and macro) to determine if they have disabling or enabling experiences. This attributes a neutral connotation of disability because disabling experiences can happen to anyone. This allows us to celebrate disability because the differences in a disabled and non-disabled body are not necessary determinants of well-being; they are merely differences that do not matter. This allows for the celebration of disability by 18 18 being different because in this account, the problem is not disability in and of itself but rather the disabling barriers that result from the way in which the individual interacts with their environment. It is not just those with disabilities that are subjected to disabling experiences and in the same token, it is not just the non-disabled people that are subjected to enabling experiences. This model realizes that both disabling and enabling experiences can happen to anyone. At this point, one may object to the EMD by arguing it broadens the term disability too much. Say for example, a female graduate student in philosophy claims she is disabled under the EMD by her professor’s preconceived notions about women’s capabilities to pursue philosophy. Here is where I would like to distinguish disability in terms of the exemplars of the classification itself from disabling experiences. The point here is to show that there is a difference between someone who may have consistently disabling experiences and having a disability. For example, a Black person may have consistently disabling experiences and be considered “disabled” to an extent, but this does not mean they have a disability. Exemplars of people with disabilities—such as those who use wheelchair— are subjected to their own historical context where they have also had their set of disabling experiences and are disabled in spite of the fact that they have a disability. The EMD does not disregard the historical context and experiences for people with disabilities. It simply states that everyone can have disabling and enabling experiences. For example, a person in a wheelchair need not be disabled with the incorporation of a ramp. Indeed, it does not aim to disregard the fact this person has a disability rather, it aims to show that the way in which this person interacts with the micro, meso, and macro levels of analyses can result in disabling or enabling experiences. In light of this, we can claim that a feature of the EMD is to integrate the MM and the SM. Primarily because it realizes that impairment at times can limit the 19 19 scope of possibility for individuals but that also other forces impact the scope of possibility for people with impairment. IV. A Case Study to Amend the ADA’s Definition: Sutton v. United States Airlines This section provides a specific case study to elucidate a possible benefit of adopting the definition of disability in the ecological model of disability (EMD) over the social model (SM). It begins by explicating the Supreme Court (SCOTUS) case of Sutton v. United States Airlines (1999). This Court case yielded one of the most controversial rulings in recent years pertaining to legal interpretation of disability status. In 1999, there was a trilogy of Supreme Court cases known as “The Sutton Trilogy” in which, all the rulings narrowly construed the definition of disability.3 Though, this section only focuses on the Sutton case, all of these rulings narrowly construed disability which is the antithesis of the Americans with Disabilities Act (ADA).4 After explicating the ruling of the Sutton case, I briefly apply both the SM and the EMD to this case, and from this I make two hypothetical rulings. I find that the SM would not allow for the sisters to claim disability status whereas the EMD would. The plaintiffs in the Sutton case were twin sisters, who applied for positions as pilots—trained as commercial pilots— for the United Airlines Company in the United States. The sisters both experienced myopic eye impairment and consequentially their uncorrected vision was less 3 The National Council on Disability (NCD) in Righting the ADA (2004), cites that in 1999, employers prevailed in 95.7% of court cases that dealt with the legal recognition of disability status, and that this was due because “The Court’s position that the definition of disability is to be construed narrowly represents a sharp break from the traditional law and expectations. It ignores and contradicts clear indications in the statue and its legislative history that the ADA was to provide a “comprehensive” prohibition of discrimination based on disability, and legislative, judicial and administrative commentary regarding the breadth of the definition of disability.” (165). 4 The ADA is a bi-partisan bill enacted by George W. Bush in 1990 (Americans with Disabilities Act of 1990. U.S.C. §12101). It formed as a response to the weak government initiatives that aimed at protecting people with disabilities, such as the federal Rehabilitation Act (enacted in 1973), section 504 prohibits discrimination against qualified persons with disabilities in federally funded programs (ibid). Section 501 and 503 of the Rehabilitation Act require affirmative action hiring plans in the federal government for people with qualified disabilities (29 U.S.C. 791-794 [1988 and Supp. I 1989]). Indeed, the government’s recognition of the need for stronger disability legislation can be attributed to the efforts of disability activism in the U.S. 20 20 than 20/200. The sisters wore corrective lenses which gave them the possibility to see as if they had 20/20 vision. They were able to “function” similarly to individuals without a visual disability. United Airlines terminated their selection interview on the grounds that the women did not meet the uncorrected visual requirement of at least 20/100 in their stipulated company policy. The Sutton sisters argued that they were unfairly denied employment on the basis of discrimination of disability. The ADA prohibits discrimination of disability only if the person is legally disabled. Under §12102(2) of the ADA, a legal recognition of disability is defined as: “[…] the term “disability” means, with respect to an individual— (A) a physical or mental impairment that substantially limits one or more major life activities5 of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment” (ADA 42. U.S. Code § 12102(2)—Definition of Disability) United Airlines argued that the plaintiffs were not disabled because the sisters had “mitigating factors” which allowed them to correct their vision impairment. For United Airlines, the sister’s impairments could not be seen as an interference with “major life activities”, as stated in the ADA because this type of impairment could be treated with corrective lenses. Justice O’Connor asserted that when determining the legal recognition of disability, it is vital to consider “if a person is taking measures to correct for, or mitigate, a physical or mental impairment, the effects of those measures–both positive and negative–must be taken into account 5Bragdon v. Abbott expanded on the major life activities portion in section (A) which, previously referred to activities that took place solely in the public sphere to include activities in the private sphere as well; these activities include “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working (ADA 42. U.S. Code §12102 (2)—Definition of disability p (2) “Major Life Activities”). 21 21 when judging whether that person is “substantially limited” in a major life activity and thus “disabled” under the Act” (SCOTUS 1999, per O’Connor). Supreme Court Justice Ginsburg held a concurring opinion, she stated that “individuals with disabilities are a discrete and insular minority […] who are subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society” and thus concluded that persons with poor eyesight who use medication to accommodate their condition do not constitute a discrete minority (SCOTUS 1999, per Ginsburg). The Court ruled that all individuals who “mitigate” their impairments must have this factor considered when evaluating whether or not one can be classified as “disabled” as per the ADA (ibid). It is important to note that the Court did not rule that people who have myopia are not qualified to be pilots but rather, that people with myopia cannot be qualified as disabled because of the possibility of mitigating their impairment with existing contact lenses or glasses. Thus, the Sutton sisters were not considered legally disabled which, meant that they could not claim discrimination on the basis of disability. The SCOTUS ruling is highly controversial and goes against the intentions of the ADA, which is to prevent discrimination against people with disabilities. Mitigating factors should not take away from people’s rights to claim disability status. Now that I have articulated my view that the ruling in the Sutton case is erroneous and antithetical to the intentions of the ADA, I turn to apply the definition of SM and the EMD to this case. If we were to directly apply the definition of disability in the SM (as per the UPIAS) to this Court case we still end up with the same erroneous ruling.6 It would start by recognizing that 6 I would like to note here that the National Council on Disability’s (NCD) failed proposal of Righting the ADA Act of 2004 recommended that the SM should be incorporated in the ADA. They proposed amending the ADA’s definition with subsection (10) which states “(10) discrimination on the basis of disability is the result of the interaction between an individual’s actual or perceived impairment and attitudinal, societal, and institutional barriers; individuals with a range of actual or perceived physical or mental impairments often experience denial of limitation of opportunities resulting from attitudinal barriers, including negative stereotypes, fear, ignorance, and 22 22 the Sutton sister’s disability is the result of societal failure to accommodate people with myopic eye impairment which hinders their opportunity and accessibility in a mainstream society. But, the Sutton sisters addressed their impairment with contact lenses. Here is the problem with the impairment (micro)/ disability (macro) binary distinction. Since the Sutton sisters addressed their impairment, it would seem logical to conclude (at least in the definition the SM in the UPIAS) that they would not be considered disabled because the sisters would not be subjected to stigma and prejudice imposed on top of their impairment by an ablest society. This is one way the SM can too narrowly construe the definition of disability. It does not take into account that institutional policies can indirectly disable or enable people. If we apply the definition of disability in the EMD to the Sutton case, then we would end up with a different ruling. This ruling would allow the sisters to claim disability status. Since the EMD states that disability/ability is malleable and determined by the way people interact with their given environment (see above), the Supreme Court may rule that the United Airlines’ stipulated vision requirement in itself creates a disabling barrier on people who do meet its standards. In other words, some people would have a disabling experience because of the prejudice, in addition to institutional and societal barriers, including architectural, transportation, and communication barriers, and the refusal to make reasonable modifications to policies, practices, or procedures, or to provide reasonable accommodations or auxiliary aids and services” (Righting the ADA 2004, Subsection (10) paragraph 2(a) proposition (4) Amendments of the ADA of 1990 [42 U.S.C. §12101], 771). Based on what I have articulated so far it seems that the NCD is not recommending the SM but rather the EMD because it recognizes that disability is the result of an interaction and because of its incorporation and recognition of “institutional barriers,” (meso level of analysis). Additionally, it is my belief that the SM is already embedded in the definition of disability in the ADA. It can be seen implicitly in section (A) of the ADA’s recognition of disability. It says that a disability is a “physical or mental impairment that substantially limits one or more major life activities” (see above). One can interpret this clause as follows: the physical impairment substantially limits the disabled person’s life not because of such impairment but because of the way society has constructed what counts as “major life activities” (see above to get the list of major life activities). Indeed, some of these activities like breathing count as necessary to human beings but others like performing manual tasks or lifting are contextually based. In other words, what we have labelled as major life activities are those that are necessary to function in contextually based positions in the society we have created. It is not the impairment that is responsible for limiting the individual but of the major life activities that are necessary to function in society that limits the individual, who cannot partake in these major life activities. Thus, the ADA is based on the social context of a person’s given position. 23 23 company’s vision requirement creates a disabling barrier because it forecloses the possibility to include anyone in it who does not meet its standards, and so people who want to pursue a career at this company and do not meet the requirement are considered disabled. This restricts and limits the way people can interact with their life habits (meso). Additionally, the Court may rule that another disabling factor in this case would be the managerial prerogative power which allows for an employer to regulate their employees in such a discriminatory way. For example, the right for an employer to terminate contracts (or not) based on vision requirements can act as a disabling barrier as well. The policy itself is not in place to necessitate termination on the grounds that the employee does not meet the company’s vision requirement, but it is in place to require that an employee must be able perform the essential functions (SCOTUS 1999, per United States Airlines). Either way, the EMD would articulate that there are clear disabling factors that contributed to the disablement of the Sutton sisters in this particular case. Therefore, the Sutton sisters would be considered disabled and would have the right to claim discrimination on the basis of disability. V. The Welfarist Account of Disability: An Objection Throughout this paper I have argued for the importance of providing a definition of disability that is inclusive and allows for celebrating disability. This section provides an objection to this claim. In Julian Savulescu and Guy Kahane’s piece “The Welfarist Account of Disability”, they endorse an inclusive and broad definition of disability which is context based but, their definition views disability as something negative. Savulescu and Kahane’s welfarist account (WA) claims that disability is a stable physical or psychological quality that leads to the reduction of well-being of an individual in given circumstances (2001, 51) In this section, I object to this account on the grounds that disability is not something that necessarily leads to a 24 24 reduction of well-being. I first elucidate the WA. I refute the WA by arguing that the inherent normative implication of this definition can in some circumstances (based on the wording of definition of the WA) allow for what we may consider paradigm cases of disability to in fact not be considered a disability. My argument is that a definition that aims to define disability should state what disability actually is. The EMD does not make the same mistake. It recognizes disabilities but argues that anyone can have disabling or enabling experiences which are dependent upon the interaction between a combination of the micro, meso, or macro levels of analyses. In other words, it would recognize that a person who has chronic depression has a disability but argues that they can have disabling or enabling experiences based on the way they interact with their environment. There is no normative implication in this model as there is in the WA. Now that I have articulated my intentions, I begin by describing the WA. Savulescu and Kahane aim to distinguish their account of disability from the medical model (MM).7 They agree that there are problems with the MM and that it should be rejected. However, their argument for rejecting the MM is that it does not attribute a normative aspect to the definition (9). For Savulescu and Kahane, deviation from a norm does not inherently reduce the well-being of an individual (ibid). Savulescu and Kahane argue that to arrive at a definition of disability that accounts for a reduction in well-being, the concept of “the harmful” must be elucidated (16). They define the harmful as “X is harmful iff [if and only if] X leads, in circumstances C, to a reduction in person S’s level of well-being” (ibid). They articulate that the concept of the harmful is what is considered as instrumentally bad for a person which is what leads to harm 7 They call the contemporary account of disability “disability SN+E” (9). Disability SN+E means disability species norm (SN) plus evaluative description (E) (ibid) which, is essentially an articulation of the medical model (MM) “a stable intrinsic property of subject S that deviates from the normal functioning of the species to which S belongs, and simply because of that makes S’s life go worse, and therefore gives reasons to avoid, regret and correct it” (ibid). 25 25 (17). Savulescu and Kahane are not satisfied yet with the concept of the harmful. They argue that this category is too broad because it could imply conditions that are both harms and harmful (ibid). They recommend narrowing it by incorporating a discriminated or harmful trait. They define the harmful trait as “a stable intrinsic property of subject S that leads to a reduction of S’s level of well-being in circumstances C” (18). But, they still aren’t satisfied with this definition. They narrow it even further by referencing the effect on well-being in relation to physical and psychological traits of an individual (ibid). This inclusion yields the WA. They define the WA as follows “a stable physical or psychological property of subject S that leads to a reduction of S’s level of well-being in circumstances C”. Notice that this definition of disability is normative in the sense that it purports that disability is a condition that is inherently negative because it leads to a reduction of well-being yet does not reference normality (in the way the MM does by defining disability in relation to a statistical mean or standard). Savulescu and Kahane explicitly acknowledge this as well (19-20). Here I articulate my argument that this account represents a defective definition of disability. Savulescu and Kahane’s definition is defective because it is too broad and too narrow. It could be the case that any physical or psychological characteristic of an individual that reduces their well-being, then that person would be considered as having a disability even though they do not constitute an exemplar of it. This represents the too broad portion. It could also be the case in the WA that it does not recognize paradigm exemplars or cases of disability as a having a disability. This case articulates that this definition is too narrow. Let me begin with the first problem of this model—that is, this definition is too broad. Savulescu and Kahane’s definition is normative, and it is this normative element that can elucidate how this definition is too broad. It could be the case that someone with red hair could count as having a disability if they apply for a 26 26 job and are rejected because the employer has a prejudice against people with red hair. Indeed, the subject’s well-being was reduced because of the fact they had red hair but, it would be absurd for us to consider this as a disability. The ecological model of disability (EMD) can be saved from this same criticism because it does not attempt to define disability in terms of stipulating the metaphysical conditions that cause disability (like the WA) but rather, it argues that people are subjected to disabling or enabling experiences based on the way they interact with others and in the larger environment. The WA is also too narrow. It is too narrow because it articulates that something counts as a disability only in certain circumstances. In other words, the WA is a contextual definition. The problem with this is that paradigm exemplars or cases of disability may not necessarily count as a disability if and only if it does not lead to a reduction in well-being. Someone who has Down syndrome may be placed in an environment where they can be happy and flourish. Their well-being is not curtailed by the fact they have Down syndrome. It would still thereby follow that this individual would not count as having a disability because the condition did not lead to a reduction in their well-being. Indeed, we could argue that their well-being is inherently reduced by the fact they have Down syndrome but, the WA does not say disability is something that inherently reduces well-being just that it is something that leads to a reduction of well-being.8 As aforementioned, the EMD suggests that disability is something that is malleable not, that if a person has enabling experiences that this person would not be disabled. Thus, we can save the EMD from too narrowly construing disability for a similar reason that one may object to it too broadly construing disability. 8 Notice that the WA faces some of the same problems as the social model (SM). That is, the WA and the SM both define disability as something ambiguous but that must be negative. The SM can be further criticized for the possibility of yielding a similar conclusion to the WA, that is, a paradigm exemplar of disability may not count as a disability if the impairment was accommodated for. 27 27 I choose to maintain the EMD and refute the objection that stems from the WA. Though the WA aims to broadly construe disability as does the EMD, it has a major flaw in its aim to metaphysically define disability. The EMD does not aim to metaphysically define disability and it does not view disability as something that necessarily leads to a reduction of well-being. Additionally, the EMD’s definition does not incorporate any normative components that claim that disability is either something good or bad. Indeed, it has positive normative implications for people with disabilities which allows us to celebrate disability, that is, because it allows for neutral connotations of disability. Models of disability that view disability as negative or a problem that needs to be fixed only contribute to the large cycle of ablest oppression imposed on people with disabilities. VI. Conclusion This paper maintained that the ecological model of disability (EMD) should replace the paradigm social model (SM) in existing disability legislation and in the disability rights movement. This paper begins with a brief description of the dominating medical model (MM) to first, elucidate its influence over society and second, to articulate that the SM emerged as a response to the MM. I argued that the SM is the dominant model in the disability rights movement precisely because the MM has contributed to the unwarranted stigma of people with disabilities. I articulated that the SM was necessary to dismantle the MM in the same way a Marxist may say that capitalism was necessary to replace feudalism. I postulated that we ought to replace the SM because it is problematic. I used Miranda Fricker to help articulate the ways in which this model constitutes a form of testimonial injustice via passive identity power. In this discussion I distinguish testimonial injustice from testimonial exchange to foreclose the possibility of the SM committing active identity power. I argue that on these grounds we ought 28 28 to realize that the SM can be a discriminatory model because it ignores impairment reality. Next, I articulate the EMD—the model I endorse in this paper. I articulate the EMD allows for neutral connotations of disability in which the SM only allows for negative connotations, that is to say the SM still maintains that disability is something inherently negative. I articulate the EMD as a model that views disability/ability as an interaction with larger level of analyses—the micro, meso, and macro. I distinguish disability from disabling experiences to prevent the objection that the EMD too broadly construes disability. The EMD still recognizes that people have a disability but that what is negative or positive are the disabling/enabling experiences that stem from an individual’s body. In other words, disability need not to be something that results in inherently disabling experiences in the same way an abled-body necessitates only enabling experiences. The EMD still recognizes that people have disabilities and that there are factors independent of the way society is constructed that determine the scope of possibility for these people. Central to the EMD is the notion that disability/ability are concepts that can be viewed on a spectrum and they are malleable and potentially modifiable. The SM does not allow for this recognition. I find that this definition allows for disability like ability to be viewed neutrally whereas as aforementioned, the SM views disability as something negative. The SM merely points to society for the drawbacks of disability, it doesn’t allow for the celebration of disability in the same way the EMD does. I then move on to an example in law to illustrate that the EMD would serve as a better model than the SM. I examine the Supreme Court (SCOTUS) case of Sutton v. United States Airlines to show that if the definition of disability in the EMD was in the Americans with Disabilities Act (ADA) that the ruling of this case would allow the plaintiffs to obtain disability recognition. I also illustrate that the SM would not recognize the plaintiffs in this case as legally 29 29 disabled. In this particular example, we can see a serious drawback of the SM, which is the binary distinction it endorses between impairment and disability. As per the Supreme Court Judges, the mitigation of an impairment forecloses the possibility for legal recognition of disability status. In other words, if an individual accommodates their impairment so that they are not substantially limited in major life activities, then that person is not disabled. I provided an objection model that comes from Julian Savulescu and Guy Kahane. The Welfarist Account (WA) they endorse is similar to the EMD in the sense that it provides a rather broad definition of disability however; it views disability a physical or psychological trait that leads to the reduction of well-being in individuals in given circumstances. I find that we ought to reject the WA because its definition is defective on the grounds that it is too broad and too narrow. I articulated the ways in which this account can yield both conclusions that exemplars of disability may not count as being a disability, and that what clearly would not represent an exemplar of disability may indeed represent a disability if it leads to a reduction in well-being. I defended the EMD and claimed that we can save it from the same objection as we could make to the WA. I concluded the section by maintaining the EMD and refuting the WA and all models that allow for negative definitions and connotations of disability. Though I believe the EMD has a lot to contribute to disability studies, it is important to note that at the minimum this model is a political tool (like the SM) that can be used in the fight for equality. At the maximum, this model is an important epistemological tool that can help us understand impairment and disability in more adequate ways than the MM and the SM. Models of disability are merely constructs to help us understand this ambiguous classification. In other words, models of disability provide definitions of disability that do not actually tell us what disability is. They merely provide an account of disability based on perceived effects or 30 30 consequences of disability. These models do not metaphysically define disability so that we can understand the necessary components that make up disability in every case. They merely reveal exemplars of the identities we create as either positive and desirable or negative and undesirable. Unfortunately, it seems that to this day the most dominant model is the MM. We stigmatize and systematically marginalize people with disabilities by institutionalizing them, by restricting their access to infrastructures, and by continuing to de-value the intrinsic worth of people with disabilities by treating them as third-class citizens. The EMD as well as the SM serve as very helpful models in challenging the MM and other models that discriminate against people with disabilities (such as the WA). However, for the reasons mentioned in this paper, I find that the EMD provides an account of disability that allows us to celebrate people with disabilities and differences in the human body while broadly construing disability. 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