Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

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). 

Let’s First Define Culture 

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 the learned and shared knowledge that specific groups use to generate their behavior and interpret their experiences in the world. This definition of culture emphasizes that culture is learned – we teach children culture from the day they are born. We teach them our language, we teach them what it means to a member of a family, we teach them gender roles, we teach them what is right and wrong, we teach them with whom and how to socialize, we teach them our way of life. 
• Culture comprises beliefs about reality, how people should interact with each other, what they know about the world, and how they should respond to the social and material environments in which they find themselves. Culture is reflected in religions, morals, customs, politics, technologies, and survival strategies of a given group. This definition emphasizes that culture permeates all aspects of life and culture exists at conscious and unconscious levels. 
• Culture affects how groups work, parent, love, marry, and understand health, mental health, wellness, illness, disability, and end of life. This definition highlights the fact that culture structures our perceptions and shapes our behaviors. 

Some Thoughts About the Multiple Dimensions of Culture 

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. 

How is Self-Determination Defined?

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.). 

Individual	Group
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. (LexicoDictionary.com, n.d.-c)	Determination by the people of a territorial unit of their own future political status. (Merriam-Webster.com, n.d.-b)
Determination of one's own fate or course of action without compulsion. (TheFreeDictionary.com, n.d.-a)	Freedom of the people of a given area to determine their own political status; independence. (TheFreeDictionary.com, n.d.-a)

What is the Nexus Between Culture and Self-Determination? 

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:

1. The person. Consistent with the definition of culture as learned and shared knowledge, the person with an intellectual or developmental disability learns and internalizes cultural beliefs about the exercise of power and control over his/her/their life experiences and environment. The person’s capacity to engage in self-determination is strongly influenced by what he/she/they believe are culturally accepted behaviors and the context in which those behaviors occur. 
2. The family. Many beliefs, norms, practices, and behaviors are culturally-defined and transmitted within the family. This includes whether self-determination is encouraged, discouraged, or treated neutrally for family members with IDD. The family’s beliefs about what it means to have a disability, who has the authority/right to make decisions, the need to promote independence or interdependence, the importance of views of extended family members about acceptable behaviors, and other values systems will affect self-determination within the family unit. 
3. The community. The person and his/her/their family live within the socio-cultural contexts of a given community. Cultural influences may include and are not limited to the extent to which the family accepts or rejects community norms about what persons with IDD should or should }not be allowed to do; the sense of safety, trust, and risk within the community; experiences or encounters with law enforcement among individuals with IDD; and acceptance and inclusion of individuals with IDD in school, employment, recreation, and faith/spiritual community. 
4. The service and education systems. The culture of service and education systems dictates specific expectations and practices for self-determination for children, adolescents, and adults with IDD. The culture of these systems may or may not match the cultural beliefs and practices of the person or his/her/their family, which may result in conflict. For example, an adolescent with intellectual disability wants to attend a school dance with his classmates but his parents thinks that he is not yet ready for this experience. 

What Do We Do Next?

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:

• Acknowledge cultural differences. Recognize and respect that differences in beliefs and practices for self-determination will vary across cultural groups and in different cultural contexts. 
• Understand your own culture. Be aware of your views (including the line in the sand) about self-determination and the philosophy of the agency or program in which you are employed. Do they align? 
• Engage in self-assessment. Reflect upon your own cultural belief systems about self-determination and how they facilitate or impede your work with individuals with IDD and their families. 
• Acquire cultural knowledge and skills. Use inquiry to elicit information about the ways in which self-determination is manifested across cultural groups in general and individuals that you support or educate in particular. Initiate and participate in dialogues with peers and stakeholders to discuss the role of culture in self-determination.
• View behavior within a cultural context. The common values in disability services and supports may neither be accepted nor shared across all cultural groups. 
• Avoid the position trap. It is easy to assume a position when there are disagreements about the exercise of self-determination between an individual with IDD, his/her/their parents, and service and education systems. Seek instead common ground as there is always room for shared interests. 

Conclusion

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.