Science and
Technology and the Triple D (Disease, Disability, 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 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?
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.
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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)