Self-determination is a universal human experience. Every person desires, seeks to, and behaves in ways to exercise control of their lives – at every age across the lifespan. The process of self-determination begins at the earliest stages of a child’s life (Palmer et al., 2012). Although still very much dependent on adults, and without actually using words, infants are pretty adept at giving messages and behaving in ways to exercise control over their social and physical environments (e.g., “Pick me up,” “Put me down,” or “No way, I am not eating that!”). While many psychology researchers agree that the same human needs form the basis of self-determination, there are myriad differences in how self-determination manifests across cultural groups. This article explores the perception, meaning, and practice of self-determination using a cultural lens within the contexts of intellectual and developmental disabilities (IDD).
There are numerous definitions of culture. The Georgetown University National Center for Cultural Competence (NCCC) uses the following definitions as ways to think about culture (Gilbert, Goode & Dunne, 2007):
Culture is applicable to all people – in other words as humans we are all cultural beings. Culture is not synonymous with race or ethnicity. This is an important issue to raise because notions of culture are influenced by the social history of the United States. All people have multiple cultural identities. For example, having an intellectual or developmental disability is only one aspect of a person’s cultural identity and does not define who they are. Some people experience intersectionality, including marginalization and discrimination, because of their membership in multiple social or cultural groups. The concept of intersectionality is currently embraced by many in education and human services, including the network of individuals and organizations concerned with IDD.
Lastly, attention must be given to organizational culture, which affects all who provide or receive education, social, or other human services. Organizational culture is defined as the values and behaviors that contribute to the unique social and psychological environment of an organization (Business Dictionary.com, 2019). It includes an organization's expectations, experiences, philosophy, and values that hold it together, and is expressed in its self-image, inner workings, interactions with the outside world, and future expectations. It is based on shared attitudes, beliefs, customs, and written and unwritten rules that have been developed over time and are considered valid.
Most definitions address self-determination from the perspective of the individual or a country, nation, or cultural group (Figure 1 offers selected examples). Self-determination has a unique meaning for individuals with IDD. Historically and even in the present day, some individuals with IDD are not afforded the experiences and environments that underpin a successful process for self-determination. Michael Wehmeyer’s work is nationally recognized for definitions and conceptual models of self-determination specifically focusing on individuals with IDD: “…a characteristic of a person that leads them to make choices and decisions based on their own preferences and interests, to monitor and regulate their own actions, and to be goal oriented and self-directing” (Wehmeyer, n.d.).
Figure 1: Sample Definitions of Self-Determination
Self-determination is viewed as the degree of control an individual wants and has over the things that are important to them, and as a characteristic of interactions between the person and others.
(Institute on Community Integration, 2019)
All peoples have the right to self-determination. By virtue of that right they freely determine their political status and freely pursue their economic, social and cultural development.
(Unrepresented Nations & Peoples Organization, 2017)
The process by which a person controls their own life.
Determination by the people of a territorial unit of their own future political status.
Determination of one's own fate or course of action without compulsion.
Freedom of the people of a given area to determine their own political status; independence.
Many cultural factors converge in how self-determination is understood and practiced among the diversity of individuals and families who reside in the United States, its territories, and tribal nations. This may include, but is not limited to, age, gender, race, ethnicity, country of origin, religion/spirituality, marital status, socio-economic status, and the lived experience of disability or mental illness. The nexus between culture and self-determination is delineated in a four-tier model – the person, the family, the community, and the service and education systems (see Figure 2). While health, behavioral health, early intervention, and legal systems are not highlighted, the four-tier model delineates an approach for how it can be applied to other settings:
There are a number of practical approaches for identifying and addressing cultural differences in the perception and practice of self-determination. Among them are the following:
Self-determination is culturally defined and mediated among all peoples and societies. Education and community service systems, and their personnel, must have an understanding of culture, its multiple dimensions, and how culture is expressed among people with IDD, their families, and the communities in which they attend school, work, play, and live their lives. Toward that end this article has provided a four-tier model and practical approaches to acquiring and using cultural knowledge responsive to differences in perception and practice of self-determination among the diverse populations that reside in the United States, its territories, and tribal nations.
Gilbert, J., Goode, T. D., & Dunne, C. (2007). Cultural awareness. In Curricula Enhancement Module Series. Washington, DC: National Center for Cultural Competence, Georgetown University Center for Child and Human Development.
Goode, T. D. (2019). Four-tier cultural context model. Washington, DC: Georgetown University National Center for Cultural Competence.
Institute on Community Integration, University of Minnesota. (2019, July 9). Definition of self-determination. [Personal communication].
Organizational culture. (n.d.). In In BusinessDictionary.com. Retrieved from http://www.businessdictionary.com/definition/organizational-culture.html
Palmer, S. B., Summers, J. A., Brotherson, M. J., Erwin, E., Maude, S. P., Stroup-Rentier, V., … & Haines, S. J. (2012). Foundations for self-determination in early childhood: An inclusive model for children with disabilities. Topics in Early Childhood Special Education, 33(1), 138–147. Retrieved from https://doi.org/10.1177/0271121412445288
Self-determination. (n.d.-a). In TheFreeDictionary.com. Retrieved from https://www.thefreedictionary.com/self-determination
Self-determination. (n.d.-b). In Merriam-Webster.com. Retrieved from https://www.merriam-webster.com/dictionary/self-determination
Self-determination. (n.d.-c). In Lexico.com. Retrieved from https://www.lexico.com/en/definition/self-determination
Unrepresented Nations & Peoples Organization. (2017, September 21). Self-determination. Retrieved from https://unpo.org/article/4957
Wehmeyer, M. (n.d.). What is self-determination. Retrieved from http://www.ngsd.org/everyone/what-self-determination