Disability Research Paper Example

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Abstract

Disability is a contested concept prevalent in many bioethical discussions. This text presents disability as a phenomenon described within the academic tradition of so-called disability studies. This tradition describes disability mainly as a social phenomenon and distinguishes between impairment – the bodily state of someone’s being – and disability. The latter is largely described as the result of social processes such as discrimination and lack of accessibility. As many bioethicists building different arguments have mobilized cases involving the disabled, but at the same time described disability as a mere medical and pathological state of being, there is a tension between some bioethical discourses and disability studies. This text provides some prominent examples of such discourses.

Introduction

In 2011 the World Health Organization published its World Report on Disability. The opening statement about disability serves well as the starting point for a presentation of the concept in a bioethical context, as it precludes any attempt to formulate an easy and straightforward deﬁnition. The statement reads as follows:

Disability is complex, dynamic, multidimensional, and contested. (World Health Organization 2011)

The term disability has ﬁgured, and ﬁgures, frequently in different bioethical contexts. Notably, discussions about prenatal diagnosis and the possibility of selection, discussions about medical enhancement technology, and end-of-life decisions have mobilized cases or debated issues where the concept of disability is involved in one form or another. In older texts, and sometimes in current ones as well, one will sometimes ﬁnd synonyms for disability now largely considered to be inappropriate such as “handicapped.”

In her book Disability Bioethics: Moral Bodies, Moral Difference (Scully 2008), British bioethicist and disability researcher Jackie Leach Scully argues convincingly that disability is predominantly conceived as some form of medical condition in bioethical discussions. Scully further implies that this frequent and often unreﬂected identiﬁcation of disability with conditions of illness or impairment constitutes a problem for bioethics in its own right.

Alicia Ouellette, the American author of Bioethics and Disability: Toward a Disability Conscious Bioethics (2011), shares Scully’s views. She also points out several examples indicating that there is a deep mistrust toward bioethics in the American Disability Rights movement. Ouellette quotes Alice Mailhot, a disability rights activist, saying:

If I were listing the most dangerous people in the U.S. today, bioethicists, aka medical ethicists, would top my list – way above skinheads, whose beliefs they appear to share. (Ouellette 2011, quoting Mailhot, 1994)

In order to prevent bioethical discussions involving disability from disqualifying themselves due to fundamental ﬂaws in their approach to disability, both Scully and Ouellette argue that bioethics should approach disability in a careful manner and particularly avoid the conceptualization of disability as a primarily medical condition. They both argue that conceptualizations of disability which take into consideration not only the individual’s impairments but also the social context in which the individual is said to be disabled offer a better understanding of disability as a complex phenomenon. Implicitly, this suggests that bioethicists should inform themselves about discussions on disability within the research tradition of disability studies to a greater extent than has heretofore been the case.

Peter Singer And The Quality Of Life Argument

Like disability, bioethics today is far too complex a ﬁeld to be characterized in brief statements. Jackie Leach Scully, however, observes that “[b] ioethics’ involvement with disability has predominantly concerned moral judgments about the quality of life” (Scully 2008).

Peter Singer is arguably among the best-known supporters of the claim that quality of life assessments are a more consistent approach to questions related to life and death decisions than the argument of the sanctity of all life. In his book Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994), Singer mobilizes several court cases in which the ruling has tried to assess newborn babies’ future quality of life and reached decisions implying that the babies’ lives would terminate. All cases share the similar feature of being stories about children born with different impairments, predominantly Down’s syndrome and spina biﬁda, but also other conditions usually associated with learning difﬁculties. Singer’s utilitarian arguments concerning the importance of making quality of life assessments and his critique of the sanctity of life argument as infeasible in real-life decision making have been quite inﬂuential. Even though his views on the permission of infanticide in general have probably proved to be too radical for most, his reasoning about potential “wrongful life” is echoed in many countries’ legal regulations on prenatal diagnosis and selective abortion. Among disability activists and within the tradition of disability studies, however, Singer has largely been rejected on the grounds that one of his fundamental premises is ﬂawed. The claim is that quality of life is not a function of a person’s impairment, especially not in the sense that one’s quality of life would be progressively lower the more “serious” one’s impairments are. In order to better understand this claim, the following paragraphs are dedicated to the presentation of how disability is dealt with within the tradition of disability studies.

Disability Studies And Models Of Disability

Many bioethical discussions where the concept of disability ﬁgures are characterized by deep divisions and sharply contradicting views. Quite often these differences are rooted in opposing notions of what disability means. One extreme position would be the claim that disability is an individual pathological state of permanent illness or ill health caused by one or more impairments. The opposing and equally radical position would be that of claiming that disability is solely a result of socially contingent factors such as discrimination and alienation and that impairments have nothing to do with disability.

Disability studies is an interdisciplinary academic tradition comprising disciplines spanning from sociology and educational sciences to ethics and literature. Even though there are different traditions within disability studies, most disability scholars share the view that contingent social and societal factors are important to be recognized in order to understand disability.

During the 1960s, 1970s, and 1980s, disability activists in Europe and North-America, and the academics that followed them, argued both in political and academic contexts that disability is mainly or completely caused by social mechanisms. Central to these discussions were suggestions for new and alternative models of disability opposed to a mere biomedical or pathological understanding.

The model often referred to as the British social model of disability might be counted among the most radical, in the sense that the model in many ways rejects that there are components of disability that relate to a person’s body and functions of the body. The model suggests a clear distinction between the concepts of disability and impairment, famously stated by the Union of the Physically Impaired Against Segregation (UPIAS) in 1974:

In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. (Quoted from Shakespeare 2006)

The British social model has Marxist foundations and addresses disability as a matter of social injustice. Disability is a result of socially created barriers a person faces in everyday life, and as such, disability is unrelated to any impairment the person might be said to have. Central to this position is the claim that charity should be replaced by rights ensuring equal access to, and opportunities in, society. Further, the model suggests that disabled people are held down and exploited within a model of disability that constructs disability as the effect of impairment, and this model is frequently referred to as “the medical model.”

The medical model is not articulated theoretically by anyone other than those who are opposed to it. The term addresses notions of disability where disability is seen as an individual state of being, caused by impairment. A central claim is that the medical model understands disability as an individual tragic faith.

The most iconic example used to illustrate the social model is that of a person in a wheelchair facing a staircase. The stairs are not a natural obstacle but a socially created barrier preventing the person in the wheelchair access to the next ﬂoor. The problem is not whether or not one can walk, but the way the building is constructed. It may be observed that the social model thus rejects also the notion that the concept “normal” is deﬁned with reference to bodily functionality.

Disability scholar Michael Oliver has suggested quite radically that an “aeroplane is a mobility aid for non-ﬂyers in exactly the same way as a wheelchair is a mobility aid for non-walkers” (Oliver 1996). On this note, it may be speciﬁcally observed that the construction of buildings (as illustrated in the staircase analogy) generally reﬂects the “normal” view of human persons as having the locomotory capacities. Thus, the concept of normality may in itself be considered a discriminating concept as the notion of normality allows the “normals” (Goffman 1968) to stay in a non-reﬂexive state where there is no call for acknowledging or catering for the needs of humans who differ from the normality model. It is exactly on such an ethical ground that the rhetoric of fairness, justice, or harm may be invoked.

Central here is the rejection of the notion that disabled people’s lacking opportunities for participation in society have causes that are natural and thus beyond social control. To describe and criticize the contemporary condition as effects of social convention rather than unchangeable natural state of things is something the early disability movement shared with other contemporary movements arguing for different kinds of emancipation, for example, the civil rights movement in the United States, the Anti-Apartheid Movement, and last but not least movements toward gender equality.

As mentioned above, as it was outlined, the British social model of disability is arguably among the most radical approaches to disability as it rejects any notion of a causal link between the concepts of disability and impairment. Within this model, to suggest the existence of such causality is to express the views of the alleged medical model and, worse, to reduce the humanity of the disabled person to such an extent that his or her impairment is the only representation left.

In light of this construction of a division between a medical and a social conception of disability, it is understandable that bioethics is considered to be an adversary among disability activists. When bioethicists are described in the manner presented at the beginning of this text, this largely refers to the bioethics’ adoption of a concept of disability that, in many ways, reﬂects the alleged medical model’s conception. Further, Scully (2008) points out that disability activists’ skepticism toward bioethics is strengthened when bioethicists presenting only a medical approach to disability are seen as frequent participants in medical ethics committees and biotechnology advisory boards where questions concerning policies affecting disability are debated and decided.

Approaches To Disability In Contemporary Disability Studies

So far, a classic version of the British social model has served to illustrate a historical shift by which disability as a mere medical term was challenged. The lacking awareness of this shift among many bioethicists has been addressed as a challenge for contemporary bioethics. The British social model, which distinguishes uncompromisingly between disability and impairment, is, however, only one among other models developed in parallel with the British. A brief presentation of the most prominent among these models is offered here. It should, nonetheless, be noted that all models have been subjected to different critical assessments during later years. An outline of some of this critique together with a presentation of some current positions in contemporary disability studies is included at the end of this section.

Distinguishing between different social approaches to disability, it is customary to list the Nordic and American models of disability alongside the British. The differences between the models are often explained with reference to differences in policies and political traditions regarding disability in the different regions. In the Nordic welfare states, there are long traditions of inclusive policies combined with redistribution through taxation in order to secure free health care, free education, and a high level of social security. The so-called Nordic Model of Disability shapes disability as the result of mismatches between societal demands for certain abilities and individual conditions implying that societal demands cannot be met. The parallel to the British social model is clear, however. The Nordic model implies that not only society but also the disabled individual should make efforts to reduce the gap between societal demands for certain functionalities and one’s individual capacities. In other words, the Nordic model is more open to discussions about the relationship between impairment and disability than the British model, thus reﬂecting that Nordic disability activists and disability scholars, compared to Britain, have cooperated more with both political authorities and health authorities in order to shape disability policies.

Social approaches to disability in the United States and Canada offer less clearly deﬁned models in comparison with the British and Nordic models. However, two somewhat intertwined approaches can be pointed out. Within the ﬁrst approach, disability has been framed as a minority politics issue, and within the second, disability is framed as a cultural construction. Activism, especially in the United States, has focused on demanding rights to ensure equal access to, and equal opportunities in, society. In 1990 the Americans with Disabilities Act (ADA) was enacted by the US Congress. The law is founded on the principle of antidiscrimination and prohibits discrimination based on disability in ways parallel to the 1964 Civil Rights Act which prohibits discrimination based on color, sex, religion, or national origin.

On the one hand, the cultural approach promotes the deconstruction of cultural beliefs about disability and formulates critiques not only of policies but of representations of disability in popular culture and media. On the other hand, a cultural implication of comparing disabled people with other minorities is that disability culture is regarded not only as something that should be protected with legal rights but also something that can be celebrated and explored as something unique.

The American Deaf community provides a good example of the latter. Propelled by the linguistic discovery that sign languages are as natural and full-ﬂedged languages as those that are spoken, deaf people in America and Deaf study Scholars began to distinguish between the audiological condition of not hearing (being “deaf”) and belonging to a cultural and linguistic community (being “Deaf” with a capital “D”). Today this representation of cultural Deafness has spread worldwide among Deaf national communities.

The notion that disability is shaped and determined by social contexts remains the leading principle of disability studies. The interest in models, however, has decreased. In 2006, British disability scholar Tom Shakespeare published the book Disability Rights and Wrongs. Here, Shakespeare denounced the British social model, challenged the model’s hegemonic status in British disability studies, and called for new social research approaches to disability. First and foremost, Shakespeare criticizes the idea that one particular model of disability should claim ontological and epistemological superiority over any other attempt to describe or deﬁne disability. He also questions the British model’s lack of interest in the body with impairments as well as the reasonableness in the construction of the “medical model” as the absolute antagonistic position to the social model. Shakespeare suggests that disability should be researched as a “complex interaction” between both individually intrinsic and societal and natural external factors, and he suggests that a critical realistic approach will ensure a theoretical framework for such new research approaches.

Parallel to Shakespeare’s critique, what are often labeled as poststructuralist approaches to disability have gained momentum especially in America. Central to these approaches are critical discourse analysis inspired by Norman Fairclough’s Language and Power (1989). Critical discourse analysis focuses on language and discourses as social practices and is relativistic in the sense that no claims are made concerning the ontological and epistemological status of different discourses. In the words of disability scholar Dan Goodley “[p] oststructuralism replaces truth with discourse and scrutinises the latter” (Goodley 2011).

Examples Of Contemporary Bioethical Discussions Where The Meaning Of Disability Is Ambiguous

If the classical models opposing a mere medical notion of disability are in the process of being replaced with new approaches, this by no means implies that the critique discussed above or Scully’s and Quellette’s warnings are rendered obsolete. The abovementioned new approaches retain the notion of disability as ﬁrst and foremost a social phenomenon, and especially critical discourse analysis identiﬁes the medical discourse on disability as one of medicalization and a discourse promoting notions of disability as primarily a pathological state caused by impairment.

Even though deﬁnitions of and approaches to disability seem to be more complex and multifaceted than ever before in history, the ethical significance of constructing disability as a social phenomenon instead of a physical or natural one is still largely unaltered. The history of philosophy knows many examples where the question of nature’s order versus societies’ conventions has played a decisive role in determining ethical outcomes. Interestingly, in the most well-known cases, those defending the argument of the natural order seldom come out on top. Aristotle was wrong in suggesting that some people had the natural disposition to be slaves. There are few today who contradict Simone de Beauvoir’s claim that being second because you are a woman is a social convention we should strive to get rid of. Whether or not we reject or embrace ethical relativism it is still hard to contradict Immanuel Kant on the notion that nature’s laws differ from moral laws because the latter can be changed by decisions of the will.

This is why the question of whether or not disability is primarily a natural-pathological state of being or primarily a socially determined state of being still holds bioethical interest. In the introduction to this text, Peter Singer’s quality of life argument was presented as an example of disability being equated with poorer quality of life than non-disability, simply on the tacit assumption that there exists a natural causality that implies the more impaired your body is, the worse kind of life you will lead, and by virtue of this natural order, no efforts can alter this tragic fact.

If bioethicists like Scully and Ouellette are correct, this is a fallacy on Peter Singer’s part, and there are several implications for contemporary bioethical discussions. Two exemplary reﬂections are offered here. Discussions about the possibilities of choice in the context of procreation and medical technology frequently mobilize and discuss cases in which the choice of whether or not to have a child with one or more impairments is articulated. Preimplantation genetic diagnosis and constantly improved and less invasive tests during the early stages of pregnancy provide parents with different options of choice regarding their children’s bodies. In the case of early ultrasound screening and newly developed noninvasive tests requiring only a blood sample from the mother, the predominant issue has been the detection of Down’s syndrome. When a child with this congenital condition is detected during the early stages of pregnancy, parents are faced with the choice whether or not to terminate the pregnancy.

There are many voices in the discussions concerning the ethics of procreation and the choices made available by medical technology. One prominent voice belongs to bioethicist Julian Savulescu. Over many years and through several publications, he has developed an argument promoting what he coins “procreative beneﬁcence.” The argument is complex and Savulescu has stated careful reservations on the extent and application of it. Still, “procreative beneﬁcence” suggests that “Couples (or single reproducers) have a moral obligation to strive to have disability-free children” (Savulescu 2008). Savulescu here provides an interesting example for reﬂection as his use of the term disability (in “disability-free”) is neither clearly “medical” nor “social.” Savulescu is well informed about disability studies’ claims that disability is socially constructed, and even though he is clearly critical of a radical understanding of such a construction (i.e., the British social model), he does not reject the idea that there are social aspects to disability. Nonetheless, critics of Savulescu do not refrain from characterizing “procreative beneﬁcence” as a eugenic principle, thus implying that Savulescu makes quality of life assessments in the same manner as Singer and that Savulescu suggests a person with an impaired body is bound by nature to have a poorer life than the non-impaired.

Another example can be found in the bioethical discussions concerning pediatric cochlear implantations. Cochlear implants represent medical technology designed to give deaf people access to sound to the extent that their hearing can enable them to pick up speech. Conventional hearing aids can provide such access to sounds for only those hearing impaired persons with some degree of residual hearing. Cochlear implants thus represent the ﬁrst functional technology that can provide hearing for profoundly deaf people. Having said this, it must be added that the technology, despite major advances, is still not able to provide hearing on the level audiology would characterize as normal.

As the use of the cochlear implant technology increased, reports in media and the popular press largely communicated enthusiasm for the abilities of the technology. It thus came as a surprise to many people – some of them bioethicists – that persons who were themselves deaf from birth started to publicly criticize the new practices of implanting prelingually deaf children.

In the bioethical discussion that followed, hardly any bioethicists sided with the deaf people. The deaf people’s resistance was mainly interpreted as a “Deaf” fear of losing potential new signing members of the Deaf community. All of the involved bioethicists expressed recognition of sign languages as full-ﬂedged languages and recognized the Deaf claim to being a lingual minority. However, when arguing why deaf children nonetheless should receive cochlear implants, the bioethical argument, though it was presented in different forms, in essence stated that the need for reparation of the child’s ears would trump arguments about recognition of sign language and Deaf culture. This argument is also presented as part of a general critique of social approaches to disability. Even though he did not take part in the discussion of pediatric cochlear implantation, the well-known bioethicist John Harris in 2000 launched a general attack on social models of disability, and most of Harris’ examples centered on deafness. Harris explicitly rejects the idea of the distinction between disability and impairment and implies that impairments cause disability as a “harmed condition”:

The harm of deafness is not exhausted by the possible social exclusion. Its harm is the deprivation of worthwhile experience. (Harris 2000)

In retrospect, what is striking about the debate over pediatric cochlear implantation is the way several bioethicists engaged in the discussion despite having very little prior knowledge about deafness, Deaf history, or sign language. The Deaf critique of the implant was complex and multifaceted and raised questions about normalization, stigma, and the ethics of recognition. These were, however, largely overlooked. Instead the bioethical discussion latched on to the seemingly clear paradox between the potential of deaf children being able to hear versus the interests of the Deaf community. Even though the paradox was clear enough as an example of a pathological versus a social approach to d/Deafness, in hindsight the alleged paradox hardly touched upon the relevant ethical questions concerning pediatric cochlear implantation.

The examples above project disability studies as a discipline framing disability within normative theories involving among other things concepts of social struggle. A number of principles such as fairness, justice, and autonomy may thus be used in the course of the discussion to enhance the ethical dimensions of disability. As the social approaches to disability historically have focused on equality and non-discrimination, other principles such as charity and vulnerability have not only been less frequent in the discussions but also criticized as concepts with paternalistic connotations promoting an image of disabled people as indigent and helpless. During recent years, disability scholar Tom Shakespeare, however, have challenged such criticism on the grounds that arguing for better rights alone may overshadow the importance of recognizing all kinds of human interdependency and vulnerability (Shakespeare 2006).

Finally, it should be noted that disability scholars by no means are alone in the attempt to challenge medical notions of concepts that also might involve social aspects. Bioethicist George J. Agich, for example, has suggested that also a pure medical conception of the concept of disease itself should be challenged (Agich 1997). In the paper Toward a Pragmatic Theory of Disease, Agich identiﬁes several social aspects of the concept of disease, and parallel to the traditions of disability studies, he argues that the idea of disease as a purely medical issue should be replaced with a “pragmatic theory of Disease” (Agich 1997).

Conclusion

Even though many bioethicists today are aware that disability studies have challenged a mere medical deﬁnition of disability, the ethical implications of the switch from nature to culture are still sometimes overlooked. Based on the examples offered in this text, the rather dubious reputation of bioethicists among disability activists may be said to be understandable. However, it must not be overlooked that those formulating arguments that present disability as a seemingly mere medical concept hardly can be said to constitute a fully representative sample of bioethicists. On the contrary, bioethical discussions are usually characterized by what can be sharply opposing views and arguments. Nevertheless, disability activists can hardly be blamed for focusing their attention on the voices that they feel contradict the views they defend.

Today, it has become increasingly common to let ethical arguments be guided by or sustained with Bibliography : to empirical data. In the context of disability, it would probably be a good idea for bioethicists to become more informed on the ongoing research within disability studies. The critique of the quality of life arguments referred to in this text is not necessarily a critique of quality of life as a measure in its own right, as much as it is a critique of an historic tendency within bioethics to make theoretical assumptions about disabled peoples’ quality of life without checking the assumptions against available empirical data.

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