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CHALLENGING INCOMPETENCE: THE MEANING OF SELF-DETERMINATION
The foundation of self-determination for individuals with disabilities
in the United States rests on a set of principles deeply rooted
in equality and both civil and human rights. Self-determination
starts with the basic ideas of freedom to design a life plan, authority
to control some targeted amount of resources, support that is organized
in highly individual ways and responsibility for both the wise use
of public dollars and the civic obligation to contribute to and
be part of one's community. Standing in apparent contrast to this
movement for equality is the legal and ethical basis for guardianship.
The formal stripping away of rights guaranteed by the Constitution
and the Bill of Rights presents a formidable obstacle to the exercise
of self-determination at least as it has been articulated since
the early 1990s. (Nerney, Crowley, 1993; Nerney & Shumway, 1996)
The importance of defining the meaning of self-determination and
challenging the prejudice against individuals labeled "incompetent"
require us to examine the imposition of guardianship. Guardianship
remains as one of the major obstacles to addressing a new and more
dangerous vulnerability that people with disabilities are now experiencing.
"Incompetence" and chronic disability have become the targets for
a new eugenics movement that essentially aims to remove most protections
for this population that were previously guaranteed by law, tradition,
religion or common decency. Court sanctioned classifications of
"incompetence" reinforce the already existing societal prejudice
against those with cognitive disabilities. It is important to note
that guardianship in and of itself is not the only or sometimes
the major impediment to the exercise of self-determination. However,
the imposition of guardianship reinforces the stigma attached to
our society's view of "incompetence". Addressing this issue is part
of a coordinated campaign that needs to be mounted to speak to the
newly energized eugenics movement that has targeted individuals
with intellectual disabilities. Explicating the "meaning" of self-determination
may begin to help us develop tools to overcome some of the unwarranted
assumptions that lie behind and beneath these newly animated eugenic
This essay constitutes an opening dialogue to assist in re-evaluating
both the foundation for traditional notions of guardianship as well
as the implications of a legal process that frequently leaves individuals
with disabilities on the margins of society bereft of normal freedoms
that all Americans take for granted. This is not to say that many
family members don't seek guardianship as a legitimate way to protect
their sons and daughters, mothers and fathers even, from the vagaries
of the present system. Very few alternatives have been offered to
them. For caring family members, guardianship may seem like the
only way loved ones can be protected. Further exacerbating this
problem is the fact that only those with "legal" rights are able
to access information and gain standing with representatives of
both the public and private human service sectors. In fact, though,
the imposition of the dreaded label "incompetent" only adds to the
vulnerability of individuals with disabilities.
There is, however, another discussion that needs to take place
regarding the importance of reforming guardianship statutes in this
country. It has to do with the social, cultural, ethical as well
as the legal implications of deeming someone "incompetent" in this
society and the resultant loss of status and value for the person
with a disability.
In the early 1990s, as we began articulating the meaning of self-determination
in the first demonstration project in Southwestern New Hampshire,
one of the persons involved with this demonstration had to be admitted
to the local hospital for surgery. This was a woman with significant
cognitive and physical disabilities. Before she even got to a room
in the hospital, those accompanying her were presented with a form
that "needed" to be signed. An inquiry was made as to the whereabouts
of her guardian. This was not an admission form. It was a form that
appeared to recommend a do-not-resuscitate order be placed in her
We were informed that this was "patient self-determination". We
were appalled. Over the next few days as the hospital administrators
kept up their requests, a flow of direct support staff, case managers,
agency administrators, and friends began a steady stream to her
bedside. Someone remained with her 24 hours a day. The room began
to fill with flowers and balloons. Soon the hospital desisted. They
had come to the conclusion that this person was not a candidate
for a do-not-resuscitate order but, rather, some sort of VIP.
What happened in that hospital setting is replicated every day
throughout the country. It is especially dangerous for individuals
with cognitive disabilities. It is sometimes even more dangerous
for those with guardians especially guardians who do not see them
as equal citizens with equal worth.
We were confronted that day with a version of self-determination
that contrasted starkly with our vision of self-determination. While
some aspects of patient self-determination overlap with our vision
of self-determination, they are fundamentally different in their
history and their foundation. The differences are important as we
begin to wrestle with the meaning of guardianship (as well of our
entire human service system) because contemporary understandings
of guardianship have been shaped by a history that posits "incompetence"
as a barrier to the exercise of autonomy or self-determination.
Traditional notions of guardianship are rooted in this history especially
as it has unfolded from the ethical and legal community in the second
half of the twentieth century. Our definition of self-determination
requires a reassessment of guardianship as well as a reassessment
of traditional service and funding arrangements.
The imposition of guardianship is a civil process that removes
the essential liberties guaranteed by our Constitution and Bill
of Rights for vulnerable adults who are deemed "incompetent". For
individuals with cognitive disabilities it is unfortunately a commonplace,
even a routine experience.
It must be said, however, that many individuals with cognitive
disabilities are vulnerable, subject to exploitation and sometimes
lack adequate understanding in order to make informed decisions
and choices. We can afford neither to underestimate the reality
of disability nor to ignore the limitations it may very well impose.
Therein lies the fundamental tension at the root of the movement
toward self-determination for these individuals. If self-determination
posits freedom as a primary principle then this has to be meaningful
for all individuals with disabilities no matter how significant
that disability may be. How do we address this seemingly contradictory
set of principles: protecting persons from harm and exploitation
and insuring basic freedoms. The answer cannot be a simple abolition
of guardianship that abandons vulnerable individuals. Nor can we
any longer ignore the lasting, stigmatizing effects of the stripping
away of basic freedoms. Besides the important liberty issues presented
by the imposition of guardianship there is an equally important
issue that comes with a declaration of "incompetence". Those who
are guardians or who support this transaction need to know the implications
for acquiescing to the ethical and legal ramifications of incompetence.
In accepting the legal and ethical definition of incompetence we
may lose sight of the most serious and sustained attack on people
with chronic disabilities in the latter half of the twentieth century.
Once we become aware of these implications we may risk becoming
complicit in sustaining ideas that we do not in fact support.
The imposition of guardianship in our culture results from a finding
of incompetence. Incompetence, a mostly legal term with broad social
implications, is almost always a situational assessment. It is predicated
on the notion that a person cannot make an informed decision about
a particular task, event or activity. A person is deemed to not
be able to make a particular decision about a medical procedure,
e.g.; or it is determined that a person cannot make any rational
decisions. It is an up or down proposition. The first may result
in partial guardianship and the second in plenary or full guardianship.
There are two generally accepted theories of guardianship: "substituted
judgment" and "best interest" decision making. Substituted judgment
is usually reserved in ethical theory at least for individuals who
once could make decisions. They may, e.g., have advance directives
in the health care arena or the guardian is required to ascertain
what the person might have chosen had they been "competent". Best
interest decision making is usually reserved for children and those
who are considered not to ever have had the competence to make decisions.
Individuals with life long cognitive disabilities more frequently
end up in the second category in most contemporary ethical theory.
This distinction, however, matters very little in practice since
most guardians receive very little training on their obligations
even under substituted judgment.
COMPETING DEFINITIONS OF AUTONOMY OR SELF-DETERMINATION
Patient self-determination rests on a legal and bioethical theory
of autonomy. The person who is competent is his or her own moral
agent. Only the person can determine what is best or what constitutes
good choices or well being. This theory of autonomy as self-determination
rests on the notion that an individual is competent and can therefore
determine what constitutes a good decision. There is some debate
about just how far this notion of autonomy can be taken, but, aside
from involuntarily affecting others, there is general agreement
that it remains an ideal organizing principle for many facets of
There is of course a lot to be said for understanding the importance
of autonomy. It has been a useful tool in addressing the historic
paternalism of the medical profession. It is at the root of the
political gains that women and minority groups have made in the
past century when it is understood in its original political context.
It is best known today in the field of medicine and health policy.
That said, it rests for many ethicists and legal experts on a foundation
that has proved to be very dangerous for individuals with disabilities
if the political and social context is missing. Autonomy, then,
in this discussion, represents the use that historical interpretations
of "reason" and "reasoning" has served throughout Western philosophy
dating back to Plato and Aristotle. It has been used as a pretext
to elevate one group, usually males, from sharing political equality
with others, usually women and those occupying lower rungs on the
social scale including slaves.
The dominant school of contemporary ethical theory holds that lack
of autonomy or the ability to self-direct creates a second class
of individuals in this society, a class intellectually unable to
benefit from the freedoms guaranteed to all other citizens. The
implications have proved to be very costly indeed. Conversely, autonomy
rooted in equality, democratic theory and the political and civic
expression of freedom takes us down another, more positive, road.
The application of autonomy as an isolated principle in the field
of medical treatment and human experimentation is instructive. Where
better to understand this issue than in the realm of life and death
THE DOWNWARD SPIRAL FROM NUREMBERG
In 1947 nine American judges sat at Nuremberg to judge the Nazi
"medical" experiments. They heard 133 days of horrific testimony
concerning experiments carried out by some of Germany's leading
scientists and doctors. The world is still repulsed by these lethal
and degrading experiments. The judges at Nuremberg articulated ten
standards that were necessary for a medical experiment to be considered
legal or ethical. The first one had to do with the principle of
informed consent: voluntary consent was based on the principle of
self-determination and the notion of autonomy. Experiments could
not be carried out without informed consent.
While this may not have been the first articulation of this principle
of self-determination, it was and remains the most famous. It seems
especially flawed in one respect. The medical experiments that were
the subject of this trial were so barbaric that no coherent ethical
or legal theory could ever sanction the experiments themselves let
alone provide support for anyone to consent to them. Moreover, the
judges at Nuremberg never adequately addressed the murder of well
over 200,000 individuals with disabilities and the sterilization
of over 400,000 German citizens. Only recently have historians begun
to address the ambiguity of the Nuremberg prosecutors over this
issue and the failure to bring so many major figures to trial. (Kuhl,
Stefan, 1994) This may be because the American experience in the
first half of the twentieth century was marked by the banishment
of tens of thousands of individuals with disabilities to public
institutions through state statutes that exceeded in viciousness
the Jim Crow segregation statutes of South. In 1942 the eminent
American psychiatrist Foster Kennedy called for initiating in the
United States the same protocol that Hitler used to begin the extermination
of people with disabilities in Germany. (Foster Kennedy, 1942) His
words provided the turning point in the debate over the value of
persons with disabilities that once again has surfaced publicly
long after the Second World War ended. Foster Kennedy suggested
that it was morally acceptable to "kill with kindness". Kennedy's
assessment of the value of individuals with disabilities represents
the nadir of the first eugenics movement in the twentieth century
in this country. It also represents the "new" reasoning that has
come to dominate the field of bioethics today and lies at the heart
of a full blown second eugenics movement. It remains unclear whether
the Nuremberg Justices were likely to see the killing of individuals
with disabilities as a crime against humanity.
That said, the ideal of patient or subject self-determination became
firmly rooted in the then nascent and now fully developed field
of bioethics. The troubling aspects of this isolationist version
of self-determination become more apparent when we address the issue
of individuals with disabilities. This version of self-determination
is now the legal and ethical foundation for physician assisted suicide.
Individuals can decide that their lives no longer have meaning.
This is now considered a "right". What about those who are deemed
"incompetent". How do they partake of this new "right"? Court appointed
guardians charged with determining the "best interest" of the person
with a cognitive disability are simply the logical extension of
this doctrine. No longer do its proponents have to defend the refusal
to authorize necessary medical treatment for a person with a disability;
rather, guardians can be encouraged under this doctrine to see this
as acting in the "best interest" of the person with a disability
because they can now determine that death is a greater good than
continued, prolonged disability. It is now considered an act of
"kindness" to relieve someone with a significant disability of his
or her very life. Recent and contemporary discussions both at the
beginning of life and at the end of life no longer focus exclusively
on the gray, ethically complex areas that surround decision making
for individuals adjudicated incompetent. In fact, the discussion
has moved from relieving the "burden" of disability for the person
with a disability to relieving the burden to society that is associated
with the public cost necessary to support someone with a disability.
Furthermore, a lack of "competency" subjects the person with a disability
to greater scrutiny in the allocation of public resources than someone
without a cognitive disability.
That trend is a dangerous one of course. But the history of patient
self-determination took another, more malignant, turn in recent
years. The significance of autonomy alone as a foundation for this
version of self-determination has grown in value such that those
who are deemed not able to exercise basic decision-making are now
seen as less valuable-less equal than those who can. This flows
irrevocably from the definition of incompetence. The more "incompetent"
the less self-determination becomes a possibility.
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