Disability Studies Quarterly Spring 2003, Volume 23, No. 2 pages 203-223 <www.dsq-sds.org> Copyright 2003 by the Society for Disability Studies |
Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same Maria Barile, MSW |
Are there links between globalization, ICF1 and the development of the human genome project? How does it impact on the economics of biotechnology and eugenics? And what connection do these phenomena have to other pending world events? This article intends to explore possible associations and conjunctions with a particular focus on how these events coincide (synchronism). The fact that the newly unveiled ICF and the push for globalization emerged at approximately the same time suggests that a new social reality will result from this shift in ideology. There are two common denominators between the two trends that would lead us to this conclusion. First, the World Bank has researched, perhaps for the first time, and from a global perspective, a document on disability and poverty in which the ICHID2 was acknowledged (Elwan, A., 1999). Both this document and the notion of ICHID2 are making somewhat similar statements on the locus of the problem, using the individualism \ medical model with regards to impairment. Secondly, both are attempting to create identicalness; i.e., the standardization of everyday human activities needed for participation in the economic, political and social processes that shape our lives. Establishing a rationale for these standards involve evaluating, promoting and rewarding or punishing the participants. This homogeneity could lead to physical, cultural, and economic hegemony and thus, colonialisation. The need to create uniformity of terms, as is being done with both versions of ICIHD and the new ICF (May 2001), is similar to what is happening in the social world (globalization, standard for trading, etc.) and therein, what happens in the relationship between impairment and the social world. This approach informs us that standardization has always been problematic, primarily because those with the power to define impairment and disability were rarely those with impairments themselves, and less often representative of the grass roots. Similarly those who define set rules for globalization and standards for trading are rarely part of the general population that lives by the consequences of these decisions. Therefore, evaluating everyone with the same standards could lead to the misrepresentation of the reality lived by people with disabilities in a minority position, including gender reality. As is pointed out in a recent book about the ICIHD2 by Bedirhan and Somnath (2001), throughout history there has always been cultural and regional inequity in understanding and treating people with disabilities. Inequity occurs when the social structures and spaces, social norms, culture and the tools of social interaction are constructed without taking differences, and therefore, equity, into account. Inequity, or the application of uniform standards, results is a singleton society built on the premise that everyone is the same and that those who are not must either learn to live within the structure established for the majority or perish. In extreme terms, from a disability standpoint, this notion of "sameness" would give everyone the same accommodations. To better illustrate the point let us take the example of ramps. Ramps are of great benefit for people who have mobility impairment but useless for people who are Deaf, hearing impaired, blind, or visually impaired. As often happens, ramps are built with the assumption that they provide accessibility to the "disabled," without taking into account that in reference to disability ramps are only essential for people with mobility impairment. Similarly, impairments are understood and experienced differently in different parts of the world, depending on the social, economic, and cultural interpretation of impairments and the availability of resources to eliminate disabling environments. One alternative is to acknowledge that "same" does not always
mean "equal." A notion clearly affirmed in a Canadian legal
precedent, which indicated that "equality" does not necessarily
mean "identical treatment" (see Huck vs. Odeon Theatres in Boyer,
1985). Also, it is important to validate the notion that each impairment
is different from the other, and therefore, different solutions must be
found to accommodate all individuals with diverse impairments so that
they can fully participate in society. Moreover, the codification/standards in ICF and its preceding versions
say nothing of the grave inequity between developing and developed countries
and inter community inequity within each country. The social and cultural
interaction in these different communities produce different reactions,
leading to differing modes and levels of self understanding, as well as
different opportunities for participation. Similarly, globalization is attempting to create a standardized social, economic, and political life in a world that has been perpetually unequal. Even among the self identified democratic countries, the concept and practice of democracy are unparalleled. To say nothing of the dichotomy between developing and developed countries, between the rich and the poor. Furthermore, equality between genders is definitely uneven. In some countries, gender equality is not permitted on the political agenda, or anywhere else for that matter. When we hear about globalization, we do not hear about affirmative/equalizing action for countries or people that are in lower economic, social, or physical brackets. Likewise, although ICF claims to be less biomedical, it does not take into account that in the previous definition, the extremely biomedical classifications were assimilated by the medical rehabilitation community dominant in the disabilities community, as well as the general public. Moreover, the previous overtly biomedical definition was connected to the rehabilitation and medical industries (Albrecht, 1992), which created a large economic market, seemingly resistant to some forms of change. Therefore, enforceable equalizing provisions are required to promote the political social model in order to begin creating a balance between the predominant existing mindset of the biomedical establishment and the emerging political/self-determining social understanding that people who live with impairments have been advocating. Classification & Language In most countries, the common perception of disability has been historically embedded in the medical, individualistic model of disability; an approach that locates the problem primarily in the individual. The problem, as Oliver (1990a) states it, is "rooted in an undue emphasis on clinical diagnosis, the very nature of which is destined to lead to a partial and inhibiting view of disabled individuals" (p. 61). This leads to a socio-medical view of people with disabilities based on common perceptions. J. Bickenbach (1993) maintains that: "[t]he most commonly held belief about disablement is that it involves a defect, deficiency, dysfunction, abnormality, failing or medical 'problem' that is located in an individual... someone who is biologically inferior or subnormal" (p. 61). Moreover Bickenbach (1993), Oliver (1990b), and Goundry (1993), among others, make a connection that goes beyond mere medical thinking. They demonstrate that the medical characterization of disability is itself "defective." This in turn leads to other undesirable, pity-enhancing, disability-phobic attitudes. Nevertheless, generally speaking, most people still perceive disabled people as different in a negative way from themselves, as demonstrated by the Canadian Decima study (1992). Previous Definition Amundson (1992), Bickenbach (1993) and Pfeiffer (1998) inform us that
this terminology was intended as a classification system with codes for
various physical and mental abilities. However, due to deeply entrenched
social perceptions, at least two components of the ICIDH convey disability
phobic values. In a literature survey reviewing the definition of disability, Solomon (1993) alludes to the trickle down effect that this terminology has on the majority of the population. In the community at large, the ICIDH terminology reinforces the fear of impairment and the medical perception of disability. Oliver (1990a) explains that the principal problem lies with the disability definitions in general. He centralizes the problem in the notion of power, explaining that this definition gives those in positions of power financial rewards and prestige. Oliver (1990a) further illustrates how this definition localizes problems within the individualism and tragedy models. On a different note, "Wendell reveals how the fragmented concepts of 'impairment,' disability,' and 'handicap' (ICIDH) tend to impact negatively on the lives of women with disabilities. By trying to define impairment and disability in physical terms, and handicap in cultural, physical, and social terms, the UN document appears to be making a shaky distinction between the physical and the social aspects of disability" (Wendell, 1989, p. 5). Wendell further points out that within the ICIDH definition, "women can be disabled but not handicapped, by being unable to do things which are not considered part of the normal role for their sex" (p. 6). Solomon (1993) illustrates how the above definition creates unclear identification of disabilities in women. Yet, other critics of this definition have linked it to eugenics because, as Pfeiffer (1996; 1998) states, "the ICIDH encourages thinking about the quality of life of persons with disabilities, which leads us to eugenics" (26). Pfeiffer (1996) cites Wood as follows:
Whereas, Wood does not refer explicitly to new reproductive and genetic technologies, the implication is there. Thus, either ICIHD2 or ICF can potentially preserve and promote the medical perception of people with disabilities in all areas, including genetics. The relationship between medical professionals and people with disabilities has been a turbulent one, predominantly because of the medical establishment's power over the lives of people with disabilities and its abuse of that power during various periods throughout history and even today. Still, the medical professionals themselves appear to be harbouring "ableist" sentiments. For example, 16% of doctors in English Canada and 27% of doctors in Quebec currently believe that "it is a socially irresponsible act to have a child with a genetic disorder when prenatal diagnosis is available" (Basen, 1994). Given such attitudes, Day's remarks to the Royal Commission are not surprising: "The fact of the matter is that the disability community feels as though doctors are a real problem, not just in this context but in general" (Royal Commission, p. 31). Furthermore, research conducted in 1996 by Newell explores general practitioners' (GPs) definition of disability. He found that although GPs did not have a clear definition for the term "disability,"
The New Definition The multi layered classification still gives predominance to ideas and values that link it to the medical mode of thinking. It uses words such as "disability," "health," and "functioning impairments," which are historically based in medicine. Both ICF and ICIDH2 do try to change the meaning of some of these charged words but the definitions are still weighed down with archaic notions and terms. For example, the ICF defines "impairment" as "problems in body function or structure such as a significant deviation or loss" (p. 10). Although this definition appears less medical and allows for diverse interpretations, it also centers the "problem" in the body and mentions "deviation." Given the historical understanding of deviance as differing from the norm, and Goffman's attachment to disability (Goffman, 1963), one must assume that "deviation" implies a set of norms do exist and that the "deviation" refers to pathology of the body. This, of course, brings us back to the medical viewpoint once more. In the section outlining its background, the classification states,
However, later in the document, in the "Contextual Factors" section, it is attested that: "A person's functioning and disability is conceived as a dynamic interaction between health conditions (diseases, disorders, injuries, traumas etc.) and contextual factors. Contextual factors include both personal and environmental factors" (p.8). "Functioning" is an umbrella term referring to all bodily functions, activities and participation. Similarly, "disability" serves as an umbrella term for impairments, activity limitations or participation restrictions (p. 3). Moreover, by constructing negative and positive terms, that is, by framing impairments as negative, and functional and structural integrity as positive (p. 11), the classification is making shaky assumptions about how these standards will be used by the primary users of the classification. How will professionals use it to classify and assess individuals with disabilities? And will professionals keep the new definition in mind? or will they apply the old ones, which have been internalised by the majority of people? While this classification resembles the combination of ideas put forth by the Processus Production du Handicap model (Fougeyrollas, 1998) and a watered down version of other social models, it seems less clear than either of the original ideas. The classification still centers the locus of the "problem" in the individual's body. The individualistic ascription of the "victim approach" and the pathology are camouflaged but are still present. Moreover the classification makes a confusing and somewhat oppressive point. The classification remains in the broad context of health Given that the classification itself specifies the above, one is left
to assume that it does not account for impairment caused by specific situations,
like wars and imprisonment, where people are singled out to endure violence
and as a result, end up with some type of impairment. The classification
of the ICF does not account for this, thus implying that these factors
are not restrictions to participation (p. 7).
One aim of ICF is to:
Given the multiple definition of words and the various segments, the classification appears confusing. One can speculate that most people that wish to use these classifications will have a difficult task in utilizing it in theory and in practice. And this, despite the fact that ICF posits itself as being not only about people with disabilities:
This classification attempts to divorce socio economic factors from
disability. Historical evidence shows that race, gender, social class
and, in some cases, religion have been intertwined with economic issues.
Impairments and disabilities are no exception. Albrecht (1992) states
that "a person's position in society affects the type of severity
of physical disability one is likely to have..." (p. 14)
Although 80% of disabled people live in Asia and the Pacific, they receive only 2% of all the resources allocated to disabled people around the world. Oliver (2001) further states that 60% of disabled people in Britain and America live under the poverty line (p.14). In Quebec, L' Office des personnes handicapTes du QuTbec (1997) indicates that 42% of women and 34% of men with disabilities live below the poverty line. Thus, the linkage between socio economic status, gender, and race exist. However, if the ICF implies that environmental barriers that discriminate against people based on race or gender are not covered by this definition, when placed alongside these statistics, this statement seems almost narrow minded. In her report, Ann Elwan (1999) seemingly disagrees with the statement
made by the ICIDH2. In the conclusion of her report, Elwan states: "The
links between poverty and disability go two ways not only does disability
add to the risk of poverty, but conditions of poverty add to the risk
of disability" (p. 34).
However, if the majority of those who advocate the social model agree that environment and economics are crucial to issues of disability, then how can any document that aspires to truly account for the issue of disability dismiss the link between economics and disability? This gives rise to questions concerning the document's avowed intention to include the notion of a social model: "ICF attempts to achieve a synthesis, thereby providing a coherent view of different perspectives of health from a biological, individual and social perspective" (World Health Organization, 2001, p.20). The roots of the ICIDH classification problem reside in three main areas.
First, this classification has historical roots in an individualistic/medical
model, which imbues it with a dominant power that this newer version further
emphasizes rather than abolishes. Second, the classification highlights
the inability or deviation of the body parts and the individual's body.
Third, a large part of the text is a classification of body parts, a pathology
similar to the previous one. These factors serve to remind us of the historical
negativism of the past and promote old disability phobic perceptions still
prominent among professionals and the general public, including some persons
with disabilities. Eugenics, Economics & Global Bio medical Industries The economics and eugenics debate began as early as 1920, when psychiatrist Alfred Hoche and Karl Binding, a prominent scholar of criminal law, proposed the idea that economic savings justified the killing of "useless lives:" "idiots" and the "congenitally crippled" (http://www.holocaust trc.org/hndcp.htm). At various times in history, medicine has aligned itself with the belief that economic burden could be alleviated through the elimination of those members of society deemed "undesirable." This was done either through "hygienic programs" or by the creation of "cure industries." Nowadays, a different motivation prevails in the economics and eugenics debate. This new motivation has created a disability-related market that delivers goods and services just like any other industry. Albrecht (1992) demonstrates how the concept of physical disability is now being defined as a commodity that can be transformed into services, products, and professional industries that serve, amongst others, the medical industry, and in particular, biotechnology. If we examine new reproductive and genetic technologies from an economic perspective (Shannon, 1987), we see that the primary goal of biogenetics is the maximisation of production, including reproduction of human lives (cloning), at a minimal cost. In 1993, Langelder and Jeungst reported that the "Human Genome Project is a major industry with a budget of three billion dollars." Only 5% of this amount was set aside for the non-biomedical aspects of the project, namely the study of ethical, legal and social implications (1993). It is not yet known just how much this venture will cost. However, according to the Techno-Eugenics Email Newsletter:
From the Canadian perspective, Fuller has observed that:
In the Canadian government's 1998 paper "Canadian Biotechnology Strategy," it is acknowledged that "the human genome technology sector could have an impact similar in magnitude to the information revolution" and predicted that it could "be the next critical issue for policy development on a global scale." It further averred that "biotechnology is a huge economic venture that will continue to grow" and that funding from government would be forthcoming (www.sgc.gc.ca/WhoWeAre/PPC/Portfolio/eHumanGenome/eHumanGenome.htm#Canbiotech). This acknowledgement of a growing "economic venture support[s] the views expressed ten years earlier by those who connected genetics and bio genetics in all its forms to the creation of capital" (Barile, 1990). Since many components of biotechnology aim at the elimination of characteristics for the purpose of creating a "generation free of undesired characteristics," biotechnology is clearly linked to eugenics. Consider the issue at a more human level: what about the everyday reality
of women and men who make choices based on misinformation about the cost
of disability to society and to the individual families (Green & Statham,
1996, in Shakespeare, 1998, p. 665)? Not all women feel that they have
a real choice when considering the termination of an affected pregnancy.
For some, "the socio economic realities of caring for a disabled
child deprives them of any real option..." (Shakespeare, 1998, p.
670.) In the end, will economics determine eugenics practices? Will the bio genetic industries associated with the elimination of 'undesirable traits' prevail because they bring in more capital than the services and products that accommodate people with disabilities? Other Problems With International Standards This is the old problem stemming from individualistic, patronizing models,
in which others decide on behalf of those concerned, in this case, people
with disabilities. Interestingly, this paper is progressive in the sense
that this paper recognized its own model as a past problem in the section
on defining. Unfortunately, this historical reality seems to have been
repeated at this meeting.
Under the section "Enforcement Mechanisms," this article makes reference to various international human rights provisions, treaties and so on. Yet we must acknowledge that many have not been successful in securing the human rights of people with disabilities in some countries. In others, there has been little success. It further states: "Prior efforts by the international community to address the rights of persons with disabilities have been inadequate or too limiting of rights." Furthermore:
Exposing and Eradicating the Misconceptions For those who see eugenics as a negative development in all its forms, there are numerous challenges. Rephrasing disability and the locus of the problem is only a tiny part of an immeasurably formidable task. The task is made more difficult given that historically, society has formulated, accepted and constructed its beliefs around the notion that the problem belongs in the pathology of the individual. Financial concerns and the strong paternalistic views of society's decision makers play key roles in the construction of institutions which are popularly seen as the best alternative for individuals with disabilities and for society as a whole. This view is maintained and reinforced by the various classifications of disease, impairment, disability, handicap, function, and health, because these reinforce or allude to the idea that the problem is rooted in the individual. If we contextualize the historical understanding put forth by the social models of disability as a distinctive component, and incorporate the notion of "euthenics a science concerned with improving human functioning and well being by improving the environment and the living conditions of all of living beings from a human rights perspective" (Wolbring, 1997), we may have a collaborative classification of environmental standards. We would therefore have a collaborative environmental approach. This proposed collaborative environmental approach a system based on
the recognition of all diversities could validate the need to improve
the human condition. A task best accomplished by first admitting that
our present environment needs to be changed as it currently meets the
needs of only a few. By creating classification standards for environments, we would create a parallel classification for the historically dominant ICIDH. Then and only then could the two ideas of impairment (body) and disability (social) find common ground for implementation. The weakness of a system which was historically constructed to meet the needs of few and resulted in unequal opportunities for the majority of people would be recognised, resulting in the development of environmental equalisers at different levels of society to address these various issues. Although ICF, globalization and the human genome project are still in the early stages of development, we have no way of judging their full impact. The question remains whether their inception is coincidence or another level of synchronism in the perpetuation of the old idea that the sameness of human bodies and social relationships is good, and desired, while difference is "undesired". In the end, it is important to be aware of the new social world relationships being formed and that there are questions that arise because of this shift. Are these changes occurring spontaneously and simultaneously? If not, what role is played by the sudden "desirable values" of identicalness, which seem to be camouflaged into the standardisation of people as body parts, that is the various classifications of impairment handicap disability (ICF); the standardisation rules for global trading; the norms for identifying the worth of human lives, as dictated by eugenics under the disguise of new genetics and reproductive technologies? Overall, these seem to be historical events of the past, but are these modern day synchronisms required for survival in the evolving new world?
Note 1. In May 2001, the ICF International Classification of Functioning, Disability and Health was presented by WHO. In this paper, the writer uses ICF (Introduction) primarily, but references are made to both the 1980 ICIDH, International Classification of Impairments, Disabilities, and Handicaps (as it was previously known) and the beta version, ICIHD2 International Classification of Functioning, Disability and Health (pre final draft, December 2000).
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Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)