Defect

Gregor Wolbring, University of Calgary

Science and technology (S&T) have had throughout history — and will have in the future — positive and negative consequences for humankind. S&T is not developed and used in a value neutral environment. S&T activity is the result of human activity imbued with intention and purpose and embodying the perspectives, purposes, prejudice and particular objectives of any given society in which the research takes place. S&T is developed within the cultural, economical, ethical, and moral framework of the society in which the research takes place. Furthermore, the results of S&T are used in many different societies reflecting many different cultural, economical, ethical, moral frameworks. I will focus on the field of Bio/Gene/Nanomedicine. The development of Bio/Gene/Nanotechnology is — among other things — justified with the argument that it holds the promises to fix or help to fix perceived disabilities, impairments, diseases and defects and to diminish suffering. But who decides what is a disability, disease, an impairment and a 'defect' in need of fixing? Who decides what the mode of fixing (medical or societal) should be, and who decides what is suffering? How will these developments affect societal structures?

Perception

The right answers to these questions will help ensure that these technologies will enhance human life creatively, rather than locking us into the prejudices and misconceptions of the past. Consider the following examples of blatant insensitivity:

Fortunately the Air Dri-Goat features a patented goat-like outer sole for increased traction so you can taunt mortal injury without actually experiencing it. Right about now you're probably asking yourself "How can a trail running shoe with an outer sole designed like a goat's hoof help me avoid compressing my spinal cord into a Slinky on the side of some unsuspecting conifer, thereby rendering me a drooling, misshapen non- extreme-trail-running husk of my former self, forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state fairs, fastened to the back?" (Nike advertisement, Backpacker Magazine, October 2000).

Is it more likely for such children to fall behind in society or will they through such afflictions develop the strengths of character and fortitude that lead to the head of their packs? Here I'm afraid that the word handicap cannot escape its true definition — being placed at a disadvantage. From this perspective seeing the bright side of being handicapped is like praising the virtues of extreme poverty. To be sure, there are many individuals who rise out of its inherently degrading states. But we perhaps most realistically should see it as the major origin of asocial behavior (Watson 1996).

American bioethicist Arthur Caplan said in regards to human genetic technology, "the understanding that our society or others have of the concept of health, disease and normality will play a key role in shaping the application of emerging knowledge about human genetics" (Caplan 1992). I would add Nanomedicine/Nanotechnology into Caplan's quote because parts of nanotechnology development are inherently linked with bio/genetechnology as the following quote from a recent report on its societal implications illustrates:

Recent insights into the uses of nanofabricated devices and systems suggest that today's laborious process of genome sequencing and detecting the genes' expression can be made dramatically more efficient through use of nanofabricated surfaces and devices. Expanding our ability to characterize an individual's genetic makeup will revolutionize diagnostics and therapeutics (Roco and Bainbridge 2001).

In addition, nanomedicine and nanotechnologies must be added, to quote the report again, because they

...hold promise for contributing to a wide range of assistive solutions, from prosthetic limbs that adjust to the changes in the body, to more biocompatible implants, to artificial retinas or ears. Other opportunities lie in the area of neural prosthesis and the "spinal patch," a device envisioned to repair damage from spinal injuries (Roco and Bainbridge 2001).

Any of these solutions are linked to the normalcy concept, the ability concept, and to the perceptions of what needs to be assisted. Certainly, different responses will be made and different solutions will be sought depending on how the problem is defined, and how the problem will be defined depends on our concepts of and beliefs about such things as health, disease, disability, impairment, and defect. For example, whether being gay is seen as a disease and defect (medical model) or a variation of human diversity (social model) will lead to totally different intervention scenarios (medical cure versus social cure). In the same way, what if we would view women as a double X syndrome, or men as an XY syndrome?

In essence every biological reality can be shaped and seen as a defect, as a medical problem, or as a human rights and social problem. No one views nowadays — in western culture at least — the biological reality of being a women within a medical framework, although a women was still viewed at the end of last century in countries like the UK as too biologically fragile and emotional and thus too dependent, to bear the responsibility attached to voting, owning property, and retaining custody of their own children (Silvers et. al., 1998). Therefore, a societal cure of equal rights and respect is seen as the appropriate remedy for the existing disparity between women and men. Gays, lesbians, bisexuals, and other groups demand that their problems are seen within a social framework and not within a medical framework.

So what now about so-called disabled people? Are "disabled people" or differently said "people who do not fit society's expectation of normal ability" to be seen as a medical problem or as part of the diversity of humankind? Within the medical model, disability is viewed as a defect, a problem inherent in the person, directly caused by disease, trauma, or other health condition and a deviation from certain norms. Management of the disability of the disabled person or person-to-be is aimed at cure, prevention, or adaptation of the person (e.g. assistive devices). Medical care and rehabilitation are viewed as the primary issues, and at the political level, the principal response is that of modifying or reforming health care policy.

The social model of disability on the other hand, sees the issue mainly as a socially created problem and principally as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the environment, particularly the social environment and socially mediated aspects of the physical environment. Hence, the management of the problem requires social action, and it is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights to be seen in the same way as the issue of gender and sexual orientation. In essence able-ism is seen in the same light as racism, sexism, age-ism, homophobia, etc.

The social model of disability does not negate that a disabled person has a certain biological reality (like having no legs) which makes her/him different in her/his abilities, which make her/him not fit the norm. But it views the "need to fit a norm" as the disability and questions whether many deviations from the norm need a medical solution (adherence to the norm) or a social solution (change/elimination of norm).

Many bio/gene/nano technology applications (predictive testing, cures, adaptation) focus on the individual and his or her perceived shortcomings. They follow a medical, not a social evaluation of a characteristic (biological reality) and therefore offer only medical solutions (prevention or cure/adaptation) and no social solutions (acceptance, societal cures of equal rights and respect).

Furthermore the use and development focus of bio/gene/nanotechnology as it is perpetuates the medical, intrinsic, individualistic, defect view of disability. Not often discussed by clinicians, academics in general, or the general public is the view, commonly expressed by disabled people, that the demand for the technology is based too much on the medical model of disability and hardly acknowledges the social model of disability (Asch 1999, Miringoff 1991; Hubbard 1990: Lippman 1991; Field 1993; Fine & Asch 1982; Minden 1984; Finger 1987; Kaplan 1994; Asch 1989; Asch and Geller 1996).

The perception of disabled people as suffering entities with a poor quality of life, in need of cure and fixing for the most part does not fit with the perceptions disabled people have of themselves. This fact is illustrated by Table C.5, which compares self esteem of people having spinal cord injury with the images many nondisabled people have of what this hypothetically would mean for themselves.

Table C.5: Self-esteem ratings following severe spinal cord injury (SCI)

Percent agreeing with each statement

Nondisabled Respondents

Nondisabled Respondents Imagining Self with SCI

SCI Survivors Comparison Group

I feel that I am a person of worth.

98%

55%

95%

I feel that I have a number of good qualities.

98%

81%

98%

I take a positive attitude.

96%

57%

91%

I am satisfied with myself on the whole.

95%

39%

72%

I am inclined to feel that I am a failure.

5%

27%

9%

I feel that I do not have much to be proud of.

6%

33%

12%

I feel useless at times.

50%

91%

73%

At times I feel I am no good at all.

26%

83%

39%

Clearly, most people with spinal cord injury have positive self-images, but nondisabled people have the false impression that a person with this injury would lack self-esteem. This table was adapted from Gerhart et al., 1994, but many other studies report similar findings (Cameron 1973; Woodrich and Patterson 1983; Ray and West 1984; Stensman 1985; Bach and Tilton 1994; Cushman and Dijkers 1990; Whiteneck et al. 1985; Eisenberg and Saltz 1991; Saigal et al. 1996 Tyson and Broyles 1996; Cooley et al. 1990).

The following passage provides an example of how many professionals view the effects of people with disabilities on their families.

How did parents endure the shock [the birth of a thalidomide baby]? The few who made it through without enormous collateral damage to their lives had to summon up the same enormous reserves of courage and devotion that are necessary to all parents of children with special needs and disabilities; then, perhaps, they needed still more courage, because of the special, peculiar horror that the sight of their children produced in even the most compassionate. Society does not reward such courage... because those parents experience represents our own worst nightmare, ever since we first imagined becoming parents ourselves. The impact upon the brothers and sisters of the newborn was no less horrific. This was the defining ordeal of their family life — leaving aside for now the crushing burden on their financial resources from now on (Stephens and Brynner 2001).

While such negative views of the impact of children with disabilities on their families have dominated clinical and research literature for decades, more recent research has exposed these negative biases as empirically unsupportable and clinically destructive (e.g., Helf and Glidden, 1998; Sobsey, 1990). Contemporary research suggests that parents, like people with disabilities, do not view their children with disabilities as their "worst nightmares," as sources of "peculiar horror" or as "crushing burdens." In fact, most view them very much as they view children without disabilities, as sources of significant demands but even greater rewards (e.g., Sobsey & Scorgie 2001). Yet, people with disabilities and their families are a part of society and they can never be entirely free of the attitudes, beliefs, and biases held by professionals and the general public.

Such attitudes and beliefs about disability contribute to the drive to fix people with disabilities rather than accommodate them. For example, the quote from Stephens and Brynner seems to suggest:

1. an implicit assumption of normalcy which requires two legs and two arms

2. an expectation that everyone has to be able to perform certain functions (e.g., move from one place to another or eat)

3. an expectation that everyone has to perform this function in a the same way (e.g., walking upright on their own legs or eat with their hands)

4. an expectation that any variation in form, function, method will result in severe emotional distress for those involved in any way

These attitudes drive the development of artificial legs and arms and help to explain why thalidomide kids and their parents were confronted with the single-minded approach to outfit thalidomide kids with artificial limbs without exploring different forms of functioning. Professionals typically persisted with this approach in spite of the fact that artificial limbs were rather crude, not very functional, and mostly cosmetic at the time and they were being prescribed in great numbers. The approach nearly completely excluded alternatives, such as crawling in the absence of legs or eating with one's feet in the absence of arms. The sentiment expressed by Stephens and Brynner also prevents adaptation by society to alternative modes of function (e.g., moving and eating).

This kind of single-minded approach reflects an adherence to a certain norm, which was more readily accepted by amputees who lost their arms or legs. They were or are willing to accept this because in a large part due to the fact that they were not allowed to adapt and get used to their new condition, a process that we all know takes time. People take time to adapt to any change. Humankind is not known for its ability to adapt easily to changes (e.g., divorce, career changes). Thalidomiders did not have to readapt to a new body reality. That might explain why most Thalidomiders threw away their artificial legs and arms as soon as they were old enough to assert themselves against their parents and the medical profession. For them the reality was that they did not view their body as deficient and did not see artificial legs or arms as the most suitable mode of action. In light of the perception reflected in the Stephens and Brynner's quote, the question becomes whether the development of usable artificial legs and arms mean that someone without legs or arms will be even more stigmatized if he or she does no use them. If so, the presence of this option is not merely another free choice since existence of the option results in a coercive influence on those who might refuse it.

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