Independent Living Research Utilization 

navigation bar  ILRU Home Page Projects Publications Training Resources What's New
used as a spacer for looks

[ This can also be found on the Self-Determination Website ] [ PDF Version of this document ]


Thomas Nerney

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 arguments.

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 record.

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.


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 life.

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 decision making.


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.  

1 | 2 | 3 | next



" "

The complete ILRU website was developed with support from grants from the Department of Education. However, its contents and the opinions expressed do not necessarily represent the policy of the Department of Education, and no endorsement by the Department should be inferred. ILRU is a program of TIRR Memorial Hermann, a nationally recognized medical rehabilitation facility for persons with disabilities.

©2005-2014 ILRU Program, All rights reserved

ILRU at TIRR Memorial Hermann
TIRR Memorial Hermann Research Center
1333 Moursund Street
Houston, TX 77030-3405

713.520.0232 (Voice/TTY) 713.520.5785 (Fax)
e-mail: ilru@ilru.org

Last Modified: 04-07-05