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HEALTH ETHICS TODAY
Volume
12, Number 1, Fall/November 2001
Bioethics
and Disability: Making Assumptions Explicit
Dr. Gregor Wolbring
Department of Biochemistry and Molecular Biology
Adjunct Assistant Professor for Bioethical Issues, Community Rehabilitation & Disability
Studies
University of Calgary
Every person's life is touched by bioethics issues. Some more, some
less. Feminist approaches to bioethics developed because it was believed
that bioethics issues often touch women in special ways and that there
is a women's angle to bioethics issues. I would argue that nearly every
issue encompassed by the field of bioethics also affects disabled people
in a very special way. In this paper I want to show how disabled people
are affected by debates in bioethics and show, therefore, that a disability
approach to bioethics is essential.
End of life decision-making, the allocation of healthcare resources,
the use of genetic technology (gene therapy, genetic testing), research
on non-competent people, questions of futile care, selective non-treatment
of newborns, debates about personhood, mercy killing and disability
adjusted life years, to just name a few, are all issues that have significant
implications for disabled people and are increasingly being debated
by disabled people in non-academic, non-governmental settings. The
increased interest of disabled people in bioethics is an indication
that they feel affected by these issues. A closer look, however, reveals
that the disabled debate these issues mostly amongst themselves and
that little dialogue exists between disabled and non-disabled people
on these issues. Many conferences - academic and otherwise - where
these issues are debated, fail to have disabled people present. The
attendance of disabled people at most academic bioethics gatherings
ranges from non-existence to very low; and a disabled academic bioethicist
is a uncommon species. Furthermore, it is rare that there is the representation
of disabled people on government bodies and/or committees which develop
policies in regards to different bioethics issues. Rather, it is mostly
non-disabled people who are involved in the development of government
policies involving these issues. The negative attitude of many disabled
people towards bioethics stems from precisely these facts. Moreover,
the scholarly and non-scholarly work done by disabled people on bioethical
issues is often ignored by the academic bioethics community (Williams
1999).
If we want to understand the consequences of the debate of bioethics
issues for disabled people around the globe we have to start with the
meaning of disability. There are two main views on disability. These
may be expressed in a dialectic of "medical model" (mM) versus "social
model" (sM). The mM views a disability as a problem: a defect
intrinsic to the person or person-to-be that leads to a low quality
of life for the person and their relatives. At the political level,
the principal response of the mM is that of modifying or reforming
healthcare policy and finding money to improve medical technologies
to prevent or cure these disabilities. At the emotional level, the
principle response is one of pity and rejection. The following quotes
identify both the perception of the disabled perpetuated by the mM,
as well as the placing of the moral responsibility for the disability
(the effects on a child whose mother took the drug thalidomide, in
the second example) squarely on the shoulders of the disabled individual,
as allocated by the mM:
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? (Backpacker 2000)
How did parents endure the shock? 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. There
was not one family I have seen that was reasonable adjusted said
Dr. Vaughan. (Stephens 2001)
The social model (sM) of disability, on the other hand, sees disability
mainly as a socially created problem and as a matter of the full integration
of individuals with different biological realities and abilities into
society. Disability is not seen as an attribute or defect of an individual,
but as caused by the reaction of society towards the biological reality
of the individual. On this view, the management of the problem requires
social action, and it is the collective responsibility of society at
large to make the environmental and emotional modifications necessary
for the full participation of people with different biological realities
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. The social model allows "able-ism" to
be seen in the same light as racism or sexism.
There is a move towards understanding disability according to the
sM and thus towards seeing disability issues as issues of human rights.
For example, the World Health Organization (WHO) uses the term "disability" to
denote a multidimensional phenomenon resulting from the interaction
between people and their physical and social environment. It takes
the position that an individual must not be reduced to, or characterized
solely in terms of their impairments, activity limitations, or participation
restrictions (WHO, 2001). Nevertheless, disabled people continue to
be discriminated against in ways that other groups who have faced oppression
(such as women and blacks) no longer are. The disabled continue to
have to fight in order to have themselves seen according to the sM:
as a human rights movement.
In the rest of this paper, I will offer and briefly comment on several
examples in which we see a discriminatory approach towards the characteristic
disability. That is, the examples are justified by arguments which
view disability within the medical model while recognizing other characteristics
(such as sex and sexual orientation) within the framework of the social
model.
I) Predictive prebirth testing
The claim for the development and usage of predictive prebirth genetic and
non-genetic testing is that this testing will help to prevent defects, diseases
and suffering. But who decides what is a disease (not too long ago homosexuality
was viewed as a disease), which gene is the "defect" in need of
fixing or prevention, and what is suffering? Studies show that disabled people
(sM) often rate their own quality of life as equal to or higher than their
non-disabled counterparts (Ray, 1984; Eisenberg, 1991; Saigal, 1996; Cushman,
1990; Whiteneck, 1985; Cameron, 1973; Bach, 1994). This fact is regularly
ignored by the non-disabled (Tyson, 1996). Yet on closer examination it becomes
clear that we see the class of the disabled, as a target for predictive prebirth
testing (as much as can be tested prebirth). We see that class as a target
for the prevention of suffering.
In the UK, for example, late term abortions are only allowed in the
event that the fetus has a disability (mM). And more and more countries
outlaw sex selection without also outlawing ability selection. The
prohibition of sex selection is justified with the argument that sex
selection lowers the status of women in general and only perpetuates
the situation that gave rise to it (Wertz 1992). This and most of the
arguments used to justify the prohibition of sex selection could be
applied just as well to the prohibition of ability selection-something
that is rarely debated. Only recently did disabled people start to
question the distinction between sex selection and ability selection
(Wolbring, 2000), a notion frequently rejected by others (Wertz, 1993,
2000; Buchanan et al, 2000; Stein 1998).
II) Anti-genetic discrimination laws:
Today, many countries are developing anti-genetic discrimination laws aimed
at preventing discrimination of individuals based on their genetic pre-disposition
to certain conditions. (The legislation is meant to protect people from discrimination
in such areas as the workplace or in the context of obtaining insurance coverage.)
Now there are a variety of ways how these laws might be shaped. For example,
these laws could prohibit discrimination against people who have the gene
for a disease, like Huntington Chorea, whether or not they exhibit the clinical
symptoms for the condition. Or the laws could prohibit discrimination against
people who have the gene for the condition until such time that the clinical
symptoms for the condition appear. In this case, it would only be legal to
discriminate against someone with the gene for Huntington Chorea once they
exhibit the clinical symptoms for Huntington Chorea. In other words, as long
as one is not viewed as disabled (symptomatic) you are protected from discrimination.
As soon as you are viewed within the framework of having a disability, the
discrimination is not prohibited anymore. The laws, as they are shaped at
the moment, serve to further entrench a double standard of protection from
discrimination: discrimination against disabled symptomatic people is acceptable,
but discrimination against non-disabled, asymptomatic people is not acceptable.
These differences in the view of acceptable discrimination based on
abilities (clinical symptoms) versus other characteristics is readily
acknowledged and, it seems, endorsed by the American Society of Human
Genetics which states: "Differentiation of applicants on the basis
of health risks is legal and should be distinguished from discrimination,
which is illegal if based on race, gender, or sexual orientation. Health
insurance and disability insurance policies commonly exclude coverage
for 'preexisting conditions'" (ASHG, 1995). Moreover, this distinction
seems to be also endorsed by the American Civil Liberties Union (ACLU)
which says in their campaign for an anti-genetic discrimination law, "that
Congress should take immediate steps to protect genetic privacy… [because]
it is inherently unfair to discriminate against someone based on immutable
characteristics that do not limit their abilities..." (ACLU 2000).
With human rights groups and academia agreeing that there is an ethical/moral/political
difference between discriminations against symptomatic and asymptomatic
people, these new laws further marginalize the symptomatic disabled
people from the human/equality rights movement and further entrench
a discriminatory approach of action which is solely justified by values
based on a medical view of disability and societal view of other characteristics.
III) Wrongful life suits
In wrongful life lawsuits, it is charged that having the child in question
was a legally bad act because having to live a life with the disability in
question is worse than not existing at all. The courts refuse to entertain
a wrongful life case on the basis of illegitimacy, poverty, or race. However,
wrongful life cases based on disability (mM) are seen as justified. To justify
this distinction it is argued that, recognition of wrongful life would be
consistent with interests to future children. It accepts that where medical
knowledge and technology permits, a child should not be born to suffer extreme
pain and suffering that could be avoided but for someone's negligence. Thus,
some American judges have talked about a fundamental right of a child to
be born as a whole functional human being. (Liu, 1987)
Yet again, disability is understood from the perspective of the mM:
a move that is crucial to making this distinction.
From the examples above it seems to be clear that the debate of bioethics
issues affect disabled people to their core. Also evident from the
examples is the difference between how disability is viewed in society,
in accordance with the two models I have described. There is a move
a foot towards recognizing disability as a social construct and human
rights issue - as the disabled tend to see things. However, as we have
seen, the medical model still prevails in many areas. If a sM of disability
would be used within the debate of bioethics issues which would see
able-ism on par with racism and sexism, the debate around many bioethics
issues might be different. I suggest, therefore, that this "disability
perspective" deserves the attention of the bioethics community.
References
ACLU 2000a HtmlResAnchor http://www.aclu.org/congress/rightgenetics.asp
ACLU 2000b (July 19, 2000 Letter to The Honorable Edward M. Kennedy
Ranking Member Committee on Health, Education, Labor & Pensions
428 Dirksen Senate Office Building Washington, D.C. 20510 http://www.aclu.org/congress/l071900a.asp).
ASHG 1995 Ad Hoc Committee on Insurance Issues in Genetic Testing.
Am. J. Hum. Genet. 56:327-31, 1995 http://www.faseb.org/genetics/ashg/policy/pol-12.htm
Bach, JR & Tilton, MC, Archives of Physical Medicine and Rehabilitation,
1994, vol. 75, 626-632.
Backpacker Magazine NIKE Advertisement Oct. 2000
Buchanan, A., Brock, D., Daniels, N., Wikler, A. 2000. From Chance
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and http://www.thalidomide.ca/gwolbring
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Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B. "Self-perceived
health status and health-related quality of life of extremely low-birth-weight
infants at adolescence. JAMA. 1996;276:453-459.
Trent Stephens and Rock Brynner 2001 Dark Remedy; the impact of thalidomide,
Perseus Publishing, Cambridge Massachusetts, USA page 65/66.
Tyson JE, Broyles RS. Progress in assessing the long-term outcome
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Wertz DC, Fletcher JC. 1992. In: Holmes HB, Purdy LM, Eds. Feminist
Perspectives in Medical Ethics. Bloomington: Indiana University Press;
240-253.
Wertz D.C., Fletcher J.C. 1993 Clinical Obstetrics and Gynecology
Vol 36 (3); 541- 567.
Wertz, D.C. 2000. In:Parens E., Asch A., eds, Prenatal Testing and
Disability Rights, Georgetown University Press Washington DC.
Whiteneck, GC et al., Rocky Mountain Spinal Cord Injury System Report
to the National Institute of Handicapped Research, 1985, 29-33.
WHO 2001 http://www.who.int/icidh
Williams, R 1999. Journal of Medical Ethics 25; 75-86.
Wolbring, G. 2000, Science and the Disadvantaged, Edmonds Institute http://www.edmonds-institute.org/wolbring.asp.
Dr. Gregor Wolbring is a Biochemist at the Dept. of
Biochemistry and Molecular Biology Faculty of Medicine and an Adjunct
Assistant Professor for bioethical issues at the Dept. of Community
Rehabilitation and Disability Studies Faculty of Education both University
of Calgary. He is also the Founder and Coordinator of the International
Network on Bioethics and Disability and a member of PHEN. His webpage
is HtmlResAnchor http://www.thalidomide.ca/gwolbring
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