Science and Technology and the Triple D (Disease, Disability, Defect)

 

Gregor Wolbring

University of Calgary

 

Introduction

 

Science and technology (S & T) have had throughout history—and will have in the

future—positive and negative consequences for human kind. 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, & 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 1, 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 1: 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 Stephen’s 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.

 

Choice

 

The question arises whether usable artificial limbs increase choice as an optional tool or

establish a norm that restricts choice. Parents of Thalidomiders were not given much choice.  Immense pressure was used to have the parents equip their kids with artificial limbs. Society already judges certain tools. A hierarchy regarding movement exists. Crawling is on the bottom of the acceptance list, below the wheelchair, which is seen as inferior to the artificial leg  particularly one that appears “natural.” This hierarchy is not based on functionality for the person but rather on emotions, prejudice, and rigid adherence to a normative body movement. Tools like the wheelchair are frequently demonized in expressions such as “confined to the wheelchair.” It is interesting that people do not say “confined to” artificial legs even though a wheelchair often leads to safer, easier, and more efficient mobility for an individual than artificial legs do. No one would use the phrase “confined to natural legs” for “normal” people, although in reality they are confined to their legs while many wheelchair users can leave their wheelchairs. Similarly, the negative concept of confinement is not used to describe driving a car, which is viewed as empowering rather than limiting, even though many of us are heavily dependent on this mode of transportation. In much the same way, most of us who live in the north would not survive a single winter without central heating but we generally do not label all of these people as “technology dependent.”

 

Cochlear implants provide another related example. Do we allow parents to say “No” to them if they feel there is nothing wrong with their kid using sign language, lip reading, or other alternative modes of hearing? Will the refusal by the parents be viewed as child abuse (see Harris, 2000 for an ethical argument to view it as child abuse)?  Might parents have been considered to commit child abuse if they had refused artificial limbs for their thalidomide kids? Or in today’s world, could a mother be considered to commit child abuse if she refused to terminate her pregnancy after ultrasound showed phocomelia (i.e., hands and feet attached close to the body without arms or legs) in the fetus. Of course, ultrasound wasn’t an option when most of the thalidomide cases occurred but it is today. Furthermore, would the mother abuse society by not fixing (cure, adaptation, prevention) the “problem”?

 

A hint to the answer to these questions is given by the following results of a survey of

genetic counselors in different countries (Wertz, 1998).

 

“The majority in 24 countries believed it is unfair to the child to be born with a disability. 40% agreed in USA, Canada and Chile. 36% in Finland and UK; 33% in Switzerland and the Netherlands; 29% in Argentina, 27% in Australia 25% in Sweden and 18% in Japan.”

 

“It is socially irresponsible knowingly to bring an infant with a serious [no legal document defines what is serious] genetic disorder into the world in an era of prenatal diagnosis.” More than 50% agreed in South Africa, Belgium, Greece, Portugal, Czech Republic, Hungary, Poland, Russia, Israel, Turkey, China, India, Thailand, Brazil, Columbia, Cuba, Mexico, Peru and Venezuela. 26% of US geneticists, 55% of US primary care physicians and 44% of US patients agreed.”

 

“A high percentage of genetic counselors feels that societies will never provide enough support for people with disabilities. The percentage of agreement for the statement ranges from 18% as a lowest to 80% in the UK. Germany is in the middle with 57%. The USA has a number of 65%.”

 

These statements suggest that women don’t have a free choice but to are led to follow the

path of medical intervention. In the absence of a possible social cure for disability, the only option left that may appear to be available is the medical cure in whatever shape and form, independent of its usefulness and need.

 

The treatment of Thalidomiders, the pressure to install cochlear implants, and prebirth counseling raise a more general question about whether advances in a wide range of

assistive devices, partly due to advances in micro- and nanotechnologies, will lead to increased or restricted choices.  We can hope that technological convergence offers humanity so many choices that false stereotypes about the disabled are discredited once and for all.  But this can happen only if we recognize the alternatives as real choices that must be considered with sensitivity, imagination, and — most importantly — the judgment of disabled people themselves.

 

Consequences

 

The history of the debate around bio/gene/nano-technology as it relates to disability shows a strong bias towards a medical, individualistic, intrinsic defect view of disability focusing on medical/technological cures without addressing societal components.  People who promote the use of bio/genetechnology often denounce the social model of disability (Harris 2000; Singer 2001).

 

The medical model of disability can also show itself in court rulings, such as some recent US Supreme Court rulings. The Supreme Court ruled on the "definition of disability" in Sutton v. United Airlines (130 F.3d 893, 119 S. Ct. 2139), Albertsons Inc. v. Kirkingburg (143 F.3d 1228, 119 S. Ct. 2162), and Murphy v. United Parcel (141 F.3d 1185, 119 S. Ct. 1331), stating that the Americans with Disabilites Act does not cover those persons with correctable impairments.[1]  In other words, as soon as adaptations are available, all problems must be fixed and no protections through civil rights laws, such as the ADA, are allowed anymore. Not only that the ruling implies that disability is something which can be fixed through medical technological means. A social view of disability does not fit with the above ruling.

 

We see a disenfranchisement of disabled people from the equality/human rights movement. (Wolbring 1999, 2000, and 2001).  So far, bio/genetechnology has led to an increase in discrimination against characteristics labeled as disabilities, as the following three examples illustrate.

 

First, we see a proliferation of legal cases involving wrongful life or wrongful birth suits (Wolbring, 2001,2002a).  Wrongful life suits are only accepted if the child is disabled. And wrongful birth suits are specific by now for disability with special rulings whereas cases based on non-disability are called wrongful pregnancy. The remedies in the case of wrongful birth/pregnancy cases are quite different.  The following quotations illustrate the logic of such cases.

 

“Two other justices based their agreement of wrongful life suits on the view that the physicians wrongful life liability towards the disabled infant as resting on the right to life without a handicap.  Thus the damage is measured by comparing the actual impaired life of the plaintiff to a hypothetical unimpaired life” (CA 518, 540, 82 Zeitzoff versus Katz (1986) 40 (2) PD 85 Supreme Court of Israel (482); Shapiro, 1998).

 

“in essence … that [defendants] through their negligence, [have] forced upon [the child] the worse of … two alternatives, … that nonexistence — never being born — would have been preferable to existence in the diseased state” (Soeck v. Finegold, 408 A.2d 496(Pa. 1970)).

 

“Thus the legislature has recognized,” the judge said, “as do most reasonable people, that cases exist where it is in the interest of the parents, family and possible society that it is better not to allow a fetus to develop into a seriously defective person causing serious financial and emotional problems to those who are responsible for such person’s maintenance and well-being” (Strauss, 1996).

          

Second, Anti-Genetic Discrimination laws cover discrimination on genetic characteristics which might lead in the future to 'disabilities' in a medical sense but are for the time being asymptomatic. In essence, the feature of genetic discrimination is the use of genetic information about an asymptomatic disabled person. The vogue for the establishment of an Anti-Genetic Discrimination law for asymptomatic disabled people highlights one other reality, namely that symptomatic disabled people are excluded from exactly the benefits the Anti-Genetic Discrimination laws try to address. With these new laws these symptomatic disabled people will still be discriminated against whereas the asymptomatic ones will be safe.  Not only that, ability becomes a measure to justify these new laws, as the following statement from the American Civil Liberties Union illustrates.

 

“The ACLU believes that Congress should take immediate steps to protect genetic privacy for three reasons. First, it is inherently unfair to discriminate against someone based on immutable characteristics that do not limit their abilities...” (ACLU, 2000)

 

“In sum, the ACLU believes that Americans should be judged on their actual abilities, not their potential disabilities. No American should lose a job or an insurance policy based on his or her genetic predisposition.” (ACLU, 2000)

 

A third consequence of the current mindset is differential use of genetic predictive testing.  We see an Animal Farm Philosophy in regards to what to test for. Testing to eliminate any so called disability, disease, defect is acceptable but testing to determine and select on the basis of a characteristic like sex is not (Wolbring 2000, 2001).

 

Where should we go from here?  To prevent further stigmatization, recommendations such as those quoted below from the UNESCO World Conference on Sciences 1999 conference should be implemented.

 

25. ...that there are barriers which have precluded the full participation of other groups, of both sexes, including disabled people, indigenous peoples and ethnic minorities, hereafter referred to as "disadvantaged groups..."

 

42. Equality in access to science is not only a social and ethical requirement for human development, but also a necessity for realizing the full potential of scientific communities worldwide and for orienting scientific progress towards meeting the needs of humankind. The difficulties encountered by women, constituting over half of the population in the world, in entering, pursuing and advancing in a career in the sciences and in participating in decision-making in science and technology should be addressed urgently. There is an equally urgent need to address the difficulties faced by disadvantaged groups, which preclude their full and effective participation.

 

Thus, it is essential that the greatest possible diversity of people participate in the development of convergent technologies and contribute to the associated sciences:

 

17. Scientists, research institutions and learned scientific societies and other relevant non-governmental organizations should commit themselves to increased international collaboration including exchange of knowledge and expertise. Initiatives to facilitate access to scientific information sources by scientists and institutions in the developing countries should be especially encouraged and supported. Initiatives to fully incorporate women scientists and other disadvantaged groups from the South and North into scientific networks should be implemented. In this context efforts should be made to ensure that results of publicly funded research will be made accessible.

 

79. The full participation of disadvantaged groups in all aspects of research activities, including the development of policy, also needs to be ensured.

 

81. Governments and educational institutions should identify and eliminate, from the early learning stages on educational practices that have a discriminatory effect, so as to increase the successful participation in science of individuals from all sectors of society, including disadvantaged groups.

 

91. Special efforts also need to be made to ensure the full participation of disadvantaged groups in science and technology, such efforts to include:

removing barriers in the education system;

removing barriers in the research system;

raising awareness of the contribution of these groups to

science and technology in order to

overcome existing stereotypes;

undertaking research, supported by the collection of data,

documenting constraints;

monitoring implementation and documenting best practices;

ensuring representation in policy-making bodies and forums (UNESCO, 2000)

 

We should strive to eliminate able-ism and promote the acceptance of diversity in abilities for the sake of humankind as the best defense against gene-ism, which might affect 60% of society according to a New Zealand study. This acceptance of diverse abilities is actually also needed for the thriving of assistive technologies.  For example, if an assistive technology leads to better vision than humankind has normally, should we discard the now majority of people who are less able? Or should we force all to use the new adaptive devices? Or should we demonize the ones who are more able?

 

The labeling of people and groups within a medical disease defect model against their will is unacceptable.  In essence every scientist whose work has societal consequences has to become a societal activist to prevent these consequences.

 

Conclusion

 

The views expressed here are not opposed to progress in science and technology.  As a lab bench biochemist, it would be strange for me to oppose S & T in general.  Rather, this essay emphasizes the importance of openness to different perspectives on what qualifies as progress (Wolbring, 2002b).  Science and Technology can be extremely useful, but certain perceptions, stereotypes, and societal dynamics can lead scientists and engineers to focus on certain types of S & T, quite apart from their objective utility to potential users.

 

This is not merely an issue of fairness to diverse groups of people, including the disabled.  It is also an issue of imagination and insight.  Convergent technologies will accomplish so much more for humanity, and unification of science will lead to so much greater knowledge, if they are free of the ignorant prejudices of the past.  Specifically, science and engineering will benefit from the varied perspectives that the disabled may have about what it means to improve human performance.  One essential tool to achieve this is to make sure that the teams of researchers, designers, and policy makers include many talented people who happen to be disabled.

 

References

 

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[1] National Council on Disability USA, 2000; Civil Rights, Sutton v. United Airlines, Albertsons Inc. v. Kirkingburg, and Murphy v. United Parcel (http://www.ncd.gov/newsroom/publications/policy98-99.html#1)