though it may be possible to identify some set of .... Control may be a useful heuristic when rallying oth- ... devil-may-care types of behavior might imply that in.
Research & Practice for Persons with Severe Disabilities 2005, Vol. 30, No. 3, 113-120
copyright 2005 by TASH
Self-Determination and Individuals with Severe Disabilities: Re-examining Meanings and Misinterpretations Michael L. Wehmeyer University of Kansas Although some progress has been made, the belief that students with severe cognitive and multiple disabilities will not or cannot become self-determined remains a barrierfor many such students. This article revisits topics that were identified in Wehmeyer (1998) as contributing to this problem, with a particularfocus on definitional issues pertaining to self-determination and control. In light of this discussion, a modified definition of selfdeterminationis proposed and the importancefor moving in this direction is discussed.
people with severe disabilities. This is, in part, a function of measurement. It is difficult, if not impossible, to measure self-determination without some self-report indicators, an assessment format generally not useful for people with severe disabilities. There is, however, some evidence that supports my 1998 observation that others' understanding of self-determination and its applicability to people with severe disabilities limits the latter's opportunities to become more self-determined. In 2000, Carolyn Hughes, Martin Agran, and I surveyed 1,219 teachers about their understanding and promotion of self-determination. Sixty percent of this sample indicated they were familiar with the selfdetermination construct. Teachers were also overwhelmingly in support of efforts to teach skills related to self-determination. When asked if they taught students how to self-direct learning, respondents ranged in their "yes" responses from 73% for self-reinforcement and self-evaluation to 51% for antecedent cue regulation (e.g., picture cues) and 35% for self-scheduling. These were generally encouraging findings. Less encouraging, though, it was clear that the severity of a student's disability influenced these teachers' perceptions of the importance and benefit of promoting selfdetermination. There were several significant differences between teachers grouped by the student population taught (e.g., students with mild cognitive impairments, including learning disabilities and mild mental retardation, or students with severe disabilities). In all areas except choice making, teachers working with students with mild cognitive impairments rated instruction in component elements of self-determined behavior as more important than teachers working with students with severe disabilities. Teachers working with students with severe disabilities rated the importance of instruction to promote self-determination for success in school significantly lower than teachers working with students with mild cognitive impairments. There were also significant differences in teacher ratings of the importance of teaching component elements of selfdetermined behavior across all component elements when examined by teaching setting: teachers working in self-contained and separate campus buildings, most of whom taught students with severe disabilities, rated im-
DESCRIPTORS: self-determination, severe disabilities, volition In a 1998 special issue of JASH on self-determination, I wrote about issues pertaining to how the meaning of'the self-determination construct was being interpreted (or misinterpreted) in ways I believed limited the degree to which people with severe disabilities would be provided the opportunities that would enable them to become more "self-determined" (Wehmeyer, 1998). I still believe this is a problem. In this paper I examine what we know about what people believe about self-determination and people with severe disabilities and the historical meanings and intents of the construct. In particular, I discuss how the interpretation of selfdetermination as synonymous with the notion of control is both inaccurate and inhibiting in applying the construct to people with severe disabilities. Then, I propose a refinement to my previous definitions of selfdetermined behavior and discuss how that applies to people with severe disabilities. I close with a brief discussion of educational efforts to promote the selfdetermination of students with severe disabilities.
What do People Believe About Self-Determination and People with Severe Disabilities? There is still, unfortunately, a lack of data on the application of the self-determination construct to Address all correspondence and reprint requests to Michael L. Wehmeyer, Professor, Special Education, University of Kansas, 1200 Sunnyside Ave., Room 3136, Lawrence, KS 66045. 113
114
Wehmeyer
portance lower than other teachers in all areas accept choice making. Finally, when asked to identify reasons why she or he might not provide instruction in component elements of self-determined behavior, there were clear differences based on the abilities of the students taught. Teachers working with students with severe disabilities disproportionately indicated they believed it would be of no benefit to the student and that students needed instruction in other areas more urgently. There were no differences by level of student ability in the degree to which teachers identified the lack of training or information on promoting self-determination, the availability of materials or knowledge of strategies, nor on the degree to which teachers thought it was someone else's responsibility (though this was not frequently identified as a reason by any teacher) as barriers. Teachers working with students with mild cognitive impairments disproportionately indicated they did not think they had the authority or latitude to teach such skills and indicated that time was a problem, neither of which was a reason identified frequently by teachers working with students with severe disabilities. Teachers of students with mild cognitive disabilities did, however, disproportionately identify that students already had adequate skills in the component elements, but the trend was opposite for teachers of students with severe disabilities. Another recent source documenting the perceptions of others pertaining to the self-determination of people with intellectual disabilities involved an international study of the importance of core dimensions of quality of life, one of which is self-determination, to various stakeholders across multiple countries (Schalock et al., 2005). This study asked 778 people receiving services for people with intellectual and developmental disabilities, 491 family members of a person with intellectual or developmental disabilities, and 773 professionals in the field of disability services from five countries/geographic regions (Canada, China, Latin America, Spain, and the United States) to rank the importance of core indicators of quality of life. People with disabilities ranked the importance of self-determination significantly higher than did professionals and family members. Interestingly, of all the quality-of-life core dimensions, professionals and family members rated selfdetermination as the lowest in importance to them. In summary, then, although there is a need for research examining the perceptions of others about selfdetermination and people with severe disabilities, and on the impact of those perceptions on opportunities that people with severe disabilities have to learn and practice skills that enable them to become more selfdetermined, I would contend that many people believe that people with severe disabilities cannot or will not become self-determined. At the heart of that belief, I contend, is how the construct itself is understood and interpreted.
Self-Determination: Meanings and Misinterpretations Revisited At the risk of redundancy, it is important to state the main points of my thesis from Wehmeyer (1998), though I will not do so in any great detail and readers are referred to the original article for more extensive discussions on each topic. The noun "self-determination" is a construct with two primary uses: the first pertains to individuals and is defined as "determination of one's own fate or course of action without compulsion" and the second pertains to groups and is defined as "freedom of the people of a given area to determine their own political status; independence" (American Heritage Dictionary, 1992). Constructs are ideas or abstractions constructed to aid in explaining other phenomena, such as human behavior. You cannot physically measure self-determination; it is a heuristic intended to assist in explaining and predicting human behavior (in the case of its usage as applied to individuals) or in explaining a state of being characterized by freedom and self-governance in the collective usage. The usage of the construct as pertaining to individuals dates from the late 1600s and relates to the philosophical doctrine of determinism, which suggests that all actions, including human behavior, are outcomes of preceding events; that is, they are caused in some way. Self-determination, or self-determinism, refers to the idea that one causes oneself to act in certain ways, as opposed to other people, settings, or events causing one to act in a certain way. Within the psychology and education literature, theoretical perspectives have been forwarded that conceptualize self-determination as an innate (e.g., inborn) capacity or need, a form of motivation, a personality trait, a form of self-regulation, or a dispositional characteristic of individuals (see Wehmeyer, Abery, Mithaug, & Stancliffe, 2003, for more detail). The national, political, or collective usage was first used by Woodrow Wilson in 1917 to communicate the right of nations to self-governance and subsequently became associated with movements emphasizing the rights of groups of people, both defined by nationality but also by shared characteristics like race, ethnicity, gender, and disability, to self-governance (Wehmeyer, 1996). Human rights groups and organizations, such as the United Nations, have issued documents describing the rights of individuals with disabilities to dignity, respect, self-determination, and self-sufficiency. In my 1998 article, I suggested that how the selfdetermination construct was understood was a factor in the degree to which people with severe disabilities had the opportunity to become more self-determined, and discussed a number of misinterpretations of the personal sense of the self-determination construct (that is, what it means to be a self-determined person) that are inaccurate or limited. Readers are referred to Weh-
Meanings and Misinterpretations of Self-Determination
meyer (1998) for more detailed discussions, but in general these misinterpretations were:
"*Self-determination as a process or outcome. There are processes pertaining to development, learning, opportunity, and experience that enable a person to become more self-determined, but in and of itself, self-determination is not a process. To the degree that promoting self-determination is an instructional or treatment goal or objective, then an outcome of that goal or objective would be that the person is more self-determined. But in terms of definition, self-determination is not a process or an outcome. When we refer to someone as selfdetermined, we mean that he or she embodies the characteristic, quality, trait, or, as I prefer, disposition of self-determination. The problem with understanding self-determination as a process or outcome is that it quickly becomes understood to be just "content" or a program, as discussed subsequently. "* Self-determination as a set of skills. If selfdetermination is simply a function of the number or complexity of the skills and abilities in one's repertoire, there are obvious limitations to the degree to which people with severe disabilities can become self-determined. Defining selfdetermination as a set of skills or specific abilities has limited utility because virtually any behavior can be an expression or reflection of one's selfdetermination. As discussed subsequently, selfdetermined behavior refers to volitional, intentional acts that enable the actor to cause things to happen in his or her life, and virtually any behavior can, in some context, be intended to do so. Although it may be possible to identify some set of knowledge, skills, and behavior that maximally enables people to become self-determined, it is not possible to define self-determined behavior by a set of behaviors. "* Self-determination as independent performance of behaviors, self-reliance, or self-sufficiency. Similarly, the limited repertoire of many people with severe disabilities that contributes to their need for extensive supports to live, learn, work, or play more independently is seen as a limitation to selfdetermination for this population when selfdetermination is seen as synonymous with doing everything for oneself. However, the capacity to perform specific behaviors (e.g., independently) is secondary in importance in being self-determined to whether one acts volitionally and makes things happen in one's life. Similarly, self-determination is not absolutely synonymous with notions of selfreliance or self-sufficiency. People who are selfdetermined are likely more self-reliant or selfsufficient than they would have been otherwise,
115
but self-determination is not definitionally contingent upon being self-reliant or self-sufficient. "*Self-determined behavior as always successful. It seems intuitive that people who are more effective problem solvers, decision makers, goal attainers, self-advocates, and so forth will achieve more positive school and adult outcomes. This in fact has been supported by research (Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, 1997) linking the self-determination of students with cognitive disabilities to more successful adult outcomes. An understanding of self-determination as only successful behavior is, however, inaccurate. The important aspect of self-determined behavior is its volitional nature and the role it plays to enable people to be causal agents in their lives. Research shows that people who are self-determined are more successful because they are goal-oriented, self-regulate their behavior, solve problems that extricate them from undesirable situations, and so forth. But selfdetermination should not be equated only with successful outcomes. "*Self-determination as something you do. I argued in the previous article that there is a tendency for service delivery systems to "programmatize" innovation. By that, I meant that systems create programs to implement innovations, and in time those programs become the innovation, at least in the eyes of the service system. An issue that remains a barrier to the clarity of the self-determination construct is that many practitioners have learned that self-determination refers to a type of program, such as a school district's program to have students with disabilities chair their IEPs or a procedure to implement a program, such as developing individualized budgets, implementing person-centered planning, and using brokers to achieve consumercontrolled health or residential services. Simply put, one cannot "do" self-determination and one certainly cannot "do self-determination" to someone else. Self-determination is not a program, curriculum, model, or process. Self-determination is a characteristic of a person that refers to volitional actions that enable people to be causal agents in their lives. Chairing IEP meetings, controlling resources used to fund disability support services, implementing person-centered planning.., these are innovative practices that will enable people to become more self-determined but are not, in and of themselves, self-determination. * Self-determination as just choice. Finally, for purposes of discussions pertaining to people with severe disabilities, it is important to reiterate that self-determination is not just choice making. Acting volitionally implies action based on one's preferences, which in turn suggests the importance of making choices. The problem, however, is
Wehmeyer
that people have interpreted promoting selfdetermination to mean only "allowing" a person to make choices. As discussed subsequently, there is more to being self-determined than simply making a choice.
Revising Meanings and Misinterpretations: Redefining Self-Determination Although I would contend that all the misinterpretations recapitulated above and in Wehmeyer (1998) still exist and limit the degree to which people with severe disabilities have the opportunity to be more selfdetermined, I have come to believe that one such misinterpretation, that self-determination is synonymous with control, is the most consequential in its impact on the degree to which others believe that the selfdetermination construct is applicable to people with severe disabilities. An examination of my 1998 article will quickly identify examples of my use of the word control as apparently synonymous with and, in fact, highly valuable for defining the self-determination construct. A few such statements from the 1998 article will suffice as exemplars:
"* "The
first meaning of the construct is one of a personal self-determination-controlling one's life and one's fate" (p. 5). " "Most simply put, self-determination means people or peoples controlling their lives and their destinies. It is both that simple and that complex" (p. 8). "*"Conceptualizations of self-determination are no different, given that they are, basically, conceptualizations and theories about how and why people or peoples assume control over their lives and their destinies" (p. 8).
It is tempting to define self-determination with the rhetoric of control. The word emphasizes the type of power and autonomy people with disabilities desire. It is also inaccurate to define self-determination as control, and I, among others, have been guilty of falling victim to the power of the "sound bite" that using the term "control" provides, at the unfortunate cost, I now believe, to the clarity and accuracy of the selfdetermination construct. Control may be a useful heuristic when rallying others to the cause, but it is not an accurate way to define self-determination and, I believe, its use represents the most consistent misuse of the self-determination construct and contributes significantly to the limited degree to which the field has focused on promoting the selfdetermination of people with severe disabilities. Writing recently, psychologist Edward Deci noted the inaccuracy of using the term control as defining selfdetermination:
The concept of personal control refers to having control over outcomes. Thus, people with disabilities would have personal control if a contingency in the environment allows them to attain an outcome by doing an instrumental behavior. In contrast, self-determination is about the self-initiation and self-regulation of one's own behavior. Of course, one needs to have control over outcomes in order to be self-determining, but personal control does not ensure self-determination (Deci, 2003, p. 23). Deci provided an example of this, noting that a person could be instructed "You will get a candy bar if your wash your face, comb your hair, and brush your teeth now," and could control the outcome (getting a candy bar) by doing the required behaviors, yet still not be acting in a self-determined manner, that is, acting volitionally" (Deci, 2003, p. 24). If self-determination is not control, what is it? The American Heritage Dictionary (1992) defined selfdetermination as the "determination of one's acts or states by oneself without external compulsion" (p. 2059). The noun "determination" has a number of meanings that influence how one understands this definition. To make a determination means to come to a decision or render a judgment. To act with determination means to be firm in one's resolve and resolute. One, thus, might conclude that self-determination means to make one's own decisions or to act resolutely. The source of the word "determination" in selfdeterminationis, however, the philosophical doctrine of determinism, as introduced earlier. The philosophical doctrine of determinism posits that actions are caused by events or natural laws that precede or are antecedent to the occurrence of the action. Behavior, then, is governed by these other events or natural laws. Consider the role of genetics in human behavior as an example of determinism. We know that people act in certain ways because of their genetic makeup. Genes, thus, are determinants of human behavior. They cause human behavior. In our modern era, we understand that human behavior has many potential causes or determinants: genes, neurochemicals, past experiences, parenting behaviors or cultural norms, religious beliefs, psychological states, emotions, and so forth. Self-determinism, or self-determination, implies that individuals cause themselves to act in certain ways, as opposed to someone or something else "causing" us to act in certain ways (Mithaug, 1998). This self-versusother dichotomy is not just equivalent to saying that self-determination refers to actions caused by forces literally internal to the person versus forces outside the person, because genes, neurotransmitters, and other determinants are, clearly, internal to the person. Instead, the notion of self-determinism is linked to the capacity of humans to, in a sense, override other determinants of their behavior so as to act based on their
Meanings and Misinterpretations of Self-Determination
own will. That is why the term volition is central to understanding self-determination. Volition refers to making conscious choices or the actual power to make conscious choices, or will. Self-determination, then, refers to self- (vs. other-) caused actions; it refers to people acting volitionally, based on their own will. Is this applicable for people with severe disabilities?The answer is yes: people with severe disabilities can be supported to act more volitionally. If a person cannot independently make decisions about all aspects of his or her lives, others can make decisions taking into account the preferences, interests, values, skills, and abilities of the person and, thus, support that person to act more based on his or her own will and volition. Is the self-determination constructfully defined by the notion of volitional behavior? Yes, but aspects of what is meant by "volitional" need to be emphasized. An interpretation of volitional behavior as laissez-faire, devil-may-care types of behavior might imply that in promoting self-determination we should simply let people do what they want. As appealing as this hedonistic interpretation may be, it is not accurate. Volition is defined as the capability of conscious choice and decision and intention (American Heritage Dictionary, 1992). Volitional behavior, then, implies intent. Intentional action refers to actions done deliberately and purposefully. Self-determined behavior is volitional and intentional. Writing about issues pertaining to theories of human agency and determinism, Bandura (1997) noted that such theories are best represented "as the exercise of self-influence to bring about desired results" (p. 7). People who are self-determined act with intent. That intent, we have proposed, is to act as causal agents in their lives. In 1992, I proposed a definition of self-determined behavior in which such behavior referred to "the attitudes and abilities required to act as the primary causal agent in one's life and to make choices regarding one's actions free from undue external influence or interference" (Wehmeyer, 1992, p. 305). At the heart of that definition was the notion of causal agency. The adjective "causal" is defined as expressing or indicating cause; showing the interaction of cause and effect. The term agent is a noun that means one who acts or has the authority to act or, alternatively, a force or substance that causes change. Self-determined people are causal agents in their lives. They act "with authority" to make or cause something to happen in their lives. Causal agency implies more, however, than just causing action; it implies that the individual who makes or causes things to happen in his or her life does so with an eye toward causing an effect to accomplish a specific end or to cause or create change; in other words, he or she acts volitionally and intentionally. Causal agency, as opposed to implying strictly that an individual simply
117
caused some event to happen, implies that action was purposeful or performed to achieve an end. Bandura (1997) noted: people can exercise influence over what they do. Most human behavior, of course, is determined by many interacting factors, and so people are contributors to, rather than the sole determiners of, what happens to them. In evaluating the role of intentionality in human agency, one must distinguish between the personal production of action for an intended outcome, and the effects that carrying out that course of action actually produce. Agency refers to acts done intentionally (Bandura, 1997, p. 3). In 1996, 1 modified this definition to reflect the types of behaviors that reflect self-determined behavior. It is common for conversations about self-determination to degrade into queries whether "choosing" to park in one parking spot versus another or other seemingly inconsequential actions are expressions of selfdetermination. There is an equal tendency to equate self-determination only with the most consequential of decisions-marriage, divorce, home buying, and so forth. Neither extreme is, in my estimation, accurate. What was missing from the original definition was that, small or large, self-determined actions contribute to one's quality of life. Thus, in 1996, I refined the definition to include this attribute, suggesting that selfdetermined behavior as "acting as the primary causal agent in one's life and making choices and decisions regardingone's quality of life free from undue external influence or interference" (p. 177). Due to issues raised in my previous discussion, I suggest that the clarity of the self-determination construct might be better enhanced by a refinement of this definition. In accord with this, I propose the following revision: Self-determined behavior refers to volitional actions that enable one to act as the primary causal agent in one's life and to maintain or improve one's quality of life. I have already defined what is intended by the term "causal agency." Volitional actions refer to the act or instance of making a conscious choice or decision with deliberate intention. It presumes what was explicit in the previous definition, that such action is not unduly influenced or interfered with. "Enable" means to render one capable or able for a task. Self-determined behavior is volitional behavior that makes one capable or able to act as the causal agent in one's life. People who are "self-determined" act in such a way as to show evidence that their actions and behaviors are self-caused, as opposed to other-caused. Such self-determinism does not imply that human behavior is not caused in some
Wehmeyer
way, but that the person has the freedom to be the causal agent in his or her life.
Self-Determination and People with Severe Disabilities Some readers might, at this point, ask whether any of this is really important. Does it matter how we define the construct and how it's used? Isn't saying we want people with severe disabilities to have "control" in their lives good enough? At one level, perhaps it is. But ultimately, I believe the answer is no, it is not good enough if we want others to believe that people with severe disabilities can become more self-determined. When we talk about control, people misunderstand this and think about the complex decisions and problems and the often complex metacognitively based actions needed to "control" all aspects of one's life. And, in the end, like many of the teachers in the Wehmeyer, Agran, and Hughes study (2000), they conclude that people with severe disabilities cannot really "control" their lives and thus dismiss the importance of selfdetermination to this population. By way of example, let me turn to an essay by Wolf Wolfensberger (2002) comparing Social Role Valorization (SRV) theory to the "sociopolitical ideolog[ies]" that "convey to bodily or functionally impaired people, and to members of other societally devalued classes, power (as expressed in 'empowerment' language), selfdetermination, and choice (as in 'freedom of choice' language)" (p. 252). Wolfensberger's thesis is that SRV is superior to what he calls empowerment or power ideologies (including autonomy, choice, self-determination) because the latter: seek only power and autonomy. Never outside of Nietzschean thinking have I seen an analysis accompany demands for power and autonomy that has gone beyond an assertion that these things are a right, or should be a right. In fact, when the power ideologists these days speak of empowerment and self-determination, they often root these ideas in a construct of rights, but hardly ever spell out whether this is to be a legal rights construct, or a human rights construct that transcends human and governmental law; and in the latter case, which the transcendent rather than the human rights are, and what the source of such rights is. So, yet another generation of gullible or vulnerable people is being misled by an intellectual, ideological, and professional elite, much as previous generations of such elites taught their versions of false religions (Wolfensberger, 2002, pp. 257-258). Wolfensberger's perspective is an extreme (or, perhaps more accurately, a more articulate) expression of
the issues I have discussed when self-determination is interpreted to mean control. The arguments set forth by Wolfensberger, in my mind, accurately capture the reasons many people hesitate to consider the application of the self-determination construct to people with severe disabilities. They believe that people with severe disabilities lack the requisite skills to exert control in their lives and will, in the end, be vulnerable and placed at significant risk. One of the reasons I chose not to write a rebuttal to Dr. Wolfensberger's essay when it appeared in the summer of 2002 was the simple fact that I agree with most of the points he raises: if one defines self-determination as personal control, which is how Wolfensberger (accurately, I believe) interpreted how the field understands the construct. Self-determination as control is a "power ideology." Although interpreting control as simply "the exercise of power, autonomy, and self-determination in and over their lives, and of power over, or vis-A-vis, other people" (p. 254) does not capture the full range of meanings of control, it is clear that as intended in the rights-based language of disability advocacy, control does mean power. The only way that "attempts at such exercise [e.g., the exercise of "total autonomy and selfdetermination] will cause harm-possibly of major extent-to self, and usually also others" (p. 255) is if selfdetermination is equated with control and power. I do not share Dr. Wolfensberger's fear of the "empowerment" construct as leading to the dire outcomes he identified. Empowerment is a construct, a heuristic that should be judged based on its utility. Writing on another construct with which he has taken exception, the quality-of-life construct, Wolfensberger (1994) noted that philosophers of science require scientific terms to strive for two principal criteria: clarity and utility. Clarity, he explained: requires that when a party uses a certain term, it defines the term clearly and uses it consistently as defined. If another party uses the same term in a different sense, then this other party needs to make clear how it defines and uses that term (p. 285). Furthermore, Wolfensberger (1994) contended that: When a term acquires too much "baggage" (surplus meaning; emotion; acrimony; multiple, inconsistent or confusing meanings), then rather than trying to constantly reiterate one's own definition of it in one's own discourse, it may be better to abandon it and craft a new term, or even a new construct (p. 286). I have suggested (Wehmeyer, 2004) that this is, in fact, the case with regard to the self-determination construct-that is, the term has become laden with multiple meanings and intents that, in the long run, result in
Meanings and Misinterpretations of Self-Determination
confusion and misunderstanding as frequently as providing clarity. The interpretation of self-determination as control is, in my estimation, both the primary way in which the self-determination construct is misinterpreted and the most damaging such misinterpretation for people with severe disabilities. The question is whether there is another construct that fully captures what is intended by the use of the term "selfdetermination." The answer to that, I believe, is no. The self-determination construct's complexity explains its utility but limits its clarity. Our charge is not to replace the construct, but to try to clarify its intent and its usage. "Empowerment" is a term associated with social and civil rights movements and typically is used, as Rappaport (1981) stated, in reference to actions that "enhance the possibilities for people to control their lives" (p. 15). Its definition is "to invest with power" (American Heritage Dictionary, 1992). Empowerment and the national, political, or collective meaning of selfdetermination both relate to the use of social and political power by people to become self-governing. The error I believe the field has made and that Wolfensberger has observed is the application of the national, political, or collective meaning of the selfdetermination construct to the level of the person. It is an error easily made and one that has been inherent in the use of the construct in the area of disability, starting with Nirje's use of the construct as both a right and a personal attribute or characteristic. I have frequently noted that when interpreting the construct within the disability perspective, one must be aware that is imbued not only with the personal sense of the term, but also with the "rights"-based emphasis seen in the corporate or national sense of the term. Earlier in this paper, when I asked rhetorically if it was all that important to emphasize the definition of self-determination as distinct from control, I indicated that at one level, it may not be. That level is at the level of self-determination and empowerment. There is, in my estimation, considerable value to the efforts of people with disabilities, their advocates, families, professionals, and others speaking out for the right of people with disabilities to self-determination; that is, to the collective right of people with disabilities to selfgovernance. This is an empowerment movement. It is, however, when that call for the "right to selfdetermination" is translated not only as a collective "right" to self-governance but also as an individual right to personal self-determination that it becomes messy and unhelpful. As I noted previously, human rights and civil rights groups, the United Nations included, have proclaimed the basic human right of people to make choices, express preferences, make decisions, and generally be "self-determined." That is typically framed as the "right" to express or enjoy selfdetermination. This recognizes an important issue with
119
regard to promoting personal self-determination: that being self-determined is equated with human dignity, value, and worth. But when the "control and power" aspect of empowerment and the national, political, or collective sense of the self-determination construct is transposed onto the personal sense of the construct, the issues raised by Wolfensberger and others arise. Is there a role for the personal self-determination in empowerment? I have suggested there is (Wehmeyer, 2004) in that one of the conundrums of empowerment is that it implies that someone "invests" someone else with power or authority. Many advocates, teachers, professionals, and family members genuinely want to do whatever they can to empower people with disabilities but, similarly, don't want to err in assuming that they possess the ultimate authority to grant such power or control. The way out of this conundrum is through efforts to enable people with disabilities to become more self-determined and, as a function of such actions, to become empowered to do so to a greater extent. I would conclude by harkening back to an early application of the self-determination construct to the area of personality psychology. As personality psychology emerged as a discipline distinct from general psychology, it took as one of its core areas of inquiry the investigation of autonomous-determined (self-caused) versus heteronomous-determined (other-caused) behaviors, drawing directly from the philosophical doctrine of determinism. An pioneer in the field wrote: It would probably be generally agreed that without autonomy, without self-government, the life process could not be understood. Selection, choice, self-regulation, adaptation, regeneration are phenomena which logically imply the autonomy of the organism. Selection, that is the search for certain environmental conditions, is only possible in a being capable of self-directed activity (Angyal, 1941, p. 34). Organisms, human beings included, are autonomous entities. Autonomous beings are self-regulating, selfdirected, and, to a lesser or greater extent, selfdetermined. I suggest that there is not a single being who is not, to some degree, self-determined. For people with severe disabilities, limitations in personal ability, opportunities, the perceptions of others, and the environments in which they live, learn, work, or play limit the degree to which they can become more selfdetermined. The role of teachers is not to teach students to control their lives. It is to enable students with severe disabilities to become more self-determined, even if it is just a little bit more. We can achieve this by enabling students to express preferences, by implementing instruction that promotes involvement in problem solving and decision making, and by promoting
Wehmeyer
self-advocacy and student-directed learning. We can do this through student involvement in educational planning meetings; through the provision of supports, selfor other-directed, including technology, that augment capacity; through effective communication instruction; and through person-centered planning. The goal is not to promote control, but to enable students to act volitionally and to become causal agents in their lives, to make things happen in their lives. Who cares if it doesn't result in absolute control? That's not what selfdetermination means anyway. It is time to rid selfdetermination, as a personal construct, of the shibboleth of control.
References American Heritage dictionary of the English language. (1992). New York: Houghton Mifflin. Angyal, A. (1941). Foundationsfor a science of personality.
Cambridge, MA: Harvard University Press. Bandura, A. B. (1997). Self-efficacy: The exercise of control.
New York: W. H. Freeman. Deci, E. L. (2003). Promoting intrinsic motivation and selfdetermination in people with mental retardation. In H. Switzky, L. Hickson, R. Schalock, & M. Wehmeyer (Eds.), Personality and motivational systems in mental retardation(pp.
1-31). Boston: Academic Press. Mithaug, D. (1998). Your right, my obligation? Journalof the Associationfor Persons with Severe Handicaps,23, 41-43.
Rappaport, J. (1981). In praise of a paradox: A social policy of empowerment over prevention. American Journal of Community Psychology, 9, 1-25.
Schalock, R., Verdugo, M., Jenaro, C., Wang, M., Wehmeyer, M., Xu, J., et al. (2005). Cross-cultural study of core quality of life indicators. American Journal of Mental Retardation, 110, 298-311.
Wehmeyer, M., Agran, M., & Hughes, C. (2000). A national
survey of teachers' promotion of self-determination and student-directed learning. Journalof Special Education,34, 5868. Wehmeyer, M. L. (1992). Self-determination and the education of students with mental retardation. Education and Training of the Mentally Retarded, 27, 302-314. Wehmeyer, M. L. (1996). Self-determination as an educational outcome: How does it relate to the educational needs of our children and youth? In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 17-36). Baltimore: Paul H. Brookes. Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps,23, 5-16. Wehmeyer, M. L. (2004). Self-determination and the empowerment of people with disabilities. American Rehabilitation, 28, 22-29. Wehmeyer, M. L., Abery, B., Mithaug, D. E., & Stancliffe, R. J. (2003). Theory in self-determination: Foundationsfor educationalpractice. Springfield, IL: Charles C. Thomas. Wehmeyer, M. L., & Palmer, S. B. (2003). Adult outcomes for students with cognitive disabilities three years after high school: The impact of self-determination. Education and Training in Developmental Disabilities,38, 131-144. Wehmeyer, M. L., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation or learning disabilities. Exceptional Children, 63, 245-255. Wolfensberger, W. (1994). Let's hang up "quality of life" as a hopeless term. In D. Goode (Ed.), Quality of life forpersons with disabilities: International perspectives and issues (pp. 285-321). Cambridge, MA: Brookline Books. Wolfensberger, W. (2002). Social role valorization and, or versus, "Empowerment." Mental Retardation, 40, 252-259. Received: October 5, 2005 Final Acceptance: October 14, 2005 Editors in Charge: Martin Agran and Carolyn Hughes
COPYRIGHT INFORMATION
TITLE: Self-Determination and Individuals with Severe Disabilities: Re-examining Meanings and Misinterpretations SOURCE: Res Pract Pers Severe Disabil 30 no3 Fall 2005 WN: 0528807516006 The magazine publisher is the copyright holder of this articleand it is reproduced with permission. Further reproduction of this article in violation of the copyright is prohibited.
Copyright 1982-2006 The H.W. Wilson Company.
All rights reserved.
