Native American Independent Living
University of Montana Research and Training Center on Disability in Rural Communities
(Originally published in Rural Special Education Quarterly (1992), Vol. 11:1, pages 41-50, and posted 1/23/02 with their kind permission.)
Abstract: The question of whether independent living (IL) services can be provided to Native Americans with disabilities living on reservations is introduced. Native American history Is briefly reviewed. The cultural and practical connections and obstacles to Implementing several key components of the IL philosophy are discussed. An actualizing process - one that recognizes the tremendous diversity across reservations and Individuals - is discussed as one method for merging these two perspectives and implementing IL services on reservations. This is only the start of a process which will be developed to examine the need for a model which addresses the Issues and problems facing American Indians with disabilities.
Native American Independent Living
There are approximately 1.4 million Native Americans (Census Bureau, 1980). Additionally, there are 64,103 Alaskan Natives, including Eskimos, American Indians, and Aleuts. These Native Americans belong to over 500 American Indian tribes and bands.
Approximately 46% of the Native American population live on reservations or in rural areas (U.S. Department of Education, 1987). There are 278 federal and state reservations (U.S. Department of Commerce, 1983). All reservations are located in remote areas and all but two have populations of less than 10,000.
American Indians appear to be at a greater risk for disease, injury, death, and disability than the general population. O'Connell (1987) reported that Native American children showed the second highest incidence of students with handicapping conditions among minority groups in public schools (9.8%). The most significant handicapping conditions for children included learning disabilities, speech impairments, and multiple handicaps.
The U.S. Census (1980) reported that American Indian adults were 1.5 times more likely to report work related disabilities than the general population. Further, they were more likely to report such problems at an earlier age.
Importantly, the proportion of rehabilitation services provided to Native Americans is substantially lower than the general population. Indeed, Native Americans with disabilities appear to be the least served and most overlooked minority.
Currently, there are no federally funded independent living centers (ILC) located on any reservation. While there are a few reservations located within the service area of an ILC (e.g., Northern Cheyenne and Crow Reservations in Montana are located within the service area of a state-funded ILC in Billings, 120 and 60 miles respectively), there are many obstacles to providing IL services, including distance, access, financial, and cultural barriers.
The report on Native American rehabilitation for the U.S. Department of Education (O'Connell, 1987) recommended that the nature and extent of existing services for American Indians with disabilities be investigated. In particular, the report emphasizes IL services to American Indians with disabilities. Further, the report suggests examining indigenous service models and cultural variables.
A central question is, Can a model of independent living be beneficial to Native Americans with disabilities? The answer to this question requires a careful review of the IL philosophy as it is defined today, and its relationship to Native American culture.
General Overview of Native American Issues
Two things differentiate Native Americans from other cultures: their connection to the land and their culture (Deloria & Lytle, 1984). Importantly, tribal governments have been fighting for the right to be recognized as independent sovereign nations. Throughout the years, the federal government has forced them into a dependency role through different mechanisms ranging from defining tribal government as a ward of the state to the present strategy of ignoring the treaty rights of certain tribes.
This dependency has led to high alcoholism rates, poor health, inadequate and unsanitary housing, high unemployment, and a general state of hopelessness (U.S. Department of Education, 1987). There is a trend of younger people becoming disabled by car crashes, violent injuries, and family violence caused by alcoholism (U.S. Department of Health and Human Services, 1989). Also, there is an increase in disabilities in the population over the age of 65. Historically, few Native Americans live into their sixties. Consequently, few services have developed to meet the specific needs of the elderly population.
For a Native American with a disability living on a reservation, the main issue is survival. In addition to living with the above problems, the person with a disability has the added difficulty of trying to live in an environment that is not accessible. These accessibility issues may be both physical and attitudinal.
A starting point of delving into Native American culture as it relates to disabilities comes from Locust (1985) . She identifies the following ten concepts of Indian spiritual beliefs which may be common to most Indian tribes:
Spiritual Beliefs Common to Most Indian Tribes
Harmony in body, mind and spirit is the basis of the core person. One has to be in a state of wellness in order to be able to relate to self and environment. Some tribes describe this state of being as "...the tranquil state of knowing all is well with the body, mind, and spirit. To be in harmony was to be at oneness with life, eternity, the Supreme Creator, and yourself" (Locust , 1985, p. 10).
Wellness and harmony are used interchangeably to describe the state toward which every person strives, although with varying balances of spirit, mind, and body. This state is an attitude toward life and relationships with others. These relationships do not only include those that may happen between two persons but those that take place around that person. For example, in discussing the harmony of compensating for failing vision, Locust (1985, p. 11 ) states:
In contrast, the concept of unwellness is described as disharmony in body, mind, and spirit. If one of these areas is in disharmony then the whole being is affected. Just because a person may have a physical or mental disability, however, does not mean one is in disharmony or in a state of unwellness. But if there is disharmony in one's environment or reactions to certain events, then a state of unwellness is present.
The most important thing to understand is the belief that each of us is responsible for our own wellness. Again, if one looks at how one's well-being is affecting not only oneself but the relationship one has with the universe, then harmony is essential to being, Locust (1985 p. 17) puts it eloquently by stating, " In the Indian belief, it is each person's responsibility to keep this protective shield strong and beautiful, not only for his own well-being but for the well-being of the tribe."
Looking at the present philosophy of independent living, the goal is for the person with a disability to have as many options as possible in order to become a contributing member of society. For a person living on a reservation, there are not that many options developed or from which to choose. For example, on some reservations - e.g., Rosebud and Blackfeet -more than 90% of housing units are without complete plumbing facilities (U.S. Department of Commerce, undated). Currently, tribal governments are having problems offering adequate services with limited resources. If one is to ask the tribal government about expanding services to address the specific problems of Native Americans with disabilities (e.g., accessible housing, rehabilitation services, accessible transportation), the response might be that these problems are recognized but resources are inadequate for the whole community, much less specialized resources for people with disabilities.
When examining concepts basic to IL philosophy in terms of their congruity with Native American culture, it is possible to see areas of compatibility as well as areas of conflict. In the following section, five key features of the IL philosophy - definition/conceptualization of disability, self advocacy, peer counseling, and consumer control - will be examined with regard to Native American culture, and a process for actualizing IL services on reservations will be suggested.
IL Standards and Native American Culture
Budde, Lachat, Lattimore, Jones, and Stolzman (1987) clearly outline the standards for independent living centers. The issues of tribal influence, however, are less clear. The following review relies heavily upon the standards for ILCs developed by Budde et al., (1987) for a perspective on IL. Its perspective on Native American culture and life comes from personal experiences of the author who has cerebral palsy, is a member of the Omaha tribe, and has lived on three different reservations, and the information sharing of Carol Locust (1988-90) among others.
Definition of Disability
The Rehabilitation Act of 1978 created a system of independent living centers (ILC) to serve individuals with severe disabilities (Frieden, 1980). While this Act specified services available to a broad range of disabling conditions, it nevertheless focused on physical features as the defining characteristics of disability. In the general Native American view, disability, where recognized, focuses on individuals who are in disharmony or who fail to fulfill their role in the family and community.
An important objective of the IL movement and a core service of ILCs is to help people with disabilities become effective self advocates. Generally, this involves learning about and exercising one's rights, including equal access, non-discrimination, and service eligibility.
The ILC Standard 5 identifies services ILCs are to provide. One of these services is advocacy, which is defined as:
An array of procedures used by consumers to act on their own behalf to present their position to others in order to achieve, maintain, or improve their independent living goals. In some cases, ILCs provide temporary advocacy at consumer's request or provide assistance to enable consumers to advocate for themselves.
Self advocacy is intimately connected with the value placed on individuals taking charge of their lives and acting in their own best interest. This requires being linked to information, understanding complex rules, effectively communicating one's need often to an impersonal bureaucracy, and being extraordinarily persistent in the face of denial.
Standard 7 calls for ILCs to conduct activities to increase community capacity to meet the needs of individuals with disabilities. One method suggested to achieve this outcome is systems advocacy.
Systems advocacy involves efforts of consumers and professionals to influence policy and program decisions that affect people with disabilities. The goal of systems advocacy is to improve the responsiveness of policies, increase the share of resources, and facilitate access to programs.
Several approaches to advocacy are practiced within the 11-field. Americans with Disabilities for Accessible Public Transportation (ADAPT) practices direct action tactics to improve access to transportation by picketing offices and chaining themselves to buses, and other civil disobedience tactics. National Council on Independent Living (NCIL) practices systems advocacy by lobbying with legislative decision makers. Others use community development strategies at a local and state level.
Standard 5.3 calls on IL centers to provide peer counseling. It further defines peer counseling as including a process where individuals with disabilities assist others with disabilities by acting as role models. Peer counselors provide information, help consumers to make informed decisions, or provide temporary types of support. In addition, Standard 5.3 lists several criteria for selecting peer counselors. Table 1 lists these criteria.
Table 1: Characteristics for Selecting Peer Counselors
The success of established ILCs provides proof that the peer counseling service is one of the most important components. However, a person with a specific disability who has effectively demonstrated personal independence and other criteria, may not be found living on a reservation.
Consumer Control and Involvement
Consumer control is a hallmark of IL. In its broadest sense, consumer control means the ability to choose among options and to take risks. Expectations for consumer control include both the control and direction of services received and the control and direction of the ILC itself.
For example, Standard 1.2.1 calls for service procedures of an ILC to require that consumers (not staff) make major decisions in such areas as independent living goals, objectives, and services. Further, Standard 8 of the Independent Living Standards, defines consumer involvement in management of an ILC as:
Qualified disabled persons shall be substantially involved in policy direction, decision making, service delivery, and management of the center and given preference as members of the board of directors. (The board should consist of at least 51% of qualified members who are disabled.)
Toward a Process for Actualizing IL with Native Americans Living on Reservations
While it is academically possible to discuss several elements of Native American culture held in common between the more than 400 tribes, not every Indian tribe has the same culture. Further, the extent of cultural involvement and practice varies with each individual. A variety of factors influence tribal and individual practices, including: tribal membership, family cultural involvement, education, social practices, influence of general society, living on or off the reservation, and direct ties to the reservation.
This diversity, itself, is a source of conflict between tribal members. It also suggests that no one model of IL services may be easily implemented across reservations - especially for those with more than one tribe. Rather, a process for educating tribal members and resolving conflicts on key issues may be needed to disseminate IL to reservations.
Brown (1986) has developed a model, the Native Self Actualization model, that may serve as a basis for initiating discussion of IL for tribal members. Figure 1 presents a schematic of the model. It prompts consideration of four cultural values (i.e., spiritual, social, training, and family) along the dimensions of generations and values. Description of Figure 1.
Figure 1: World View Pre-Self Actualization Conflicts
The values of different generations are portrayed as they affect four major areas of life.
The chart can be used by individuals and groups to consider their stance on various issues. Brown notes that the usage of the chart is a self-appraisal process, and it establishes a positive conceptualization of views and beliefs. Individuals could use these charts to decide where they are regarding cultural perspectives and personal preferences. This process could be used as a method to work towards resolving conflicts in the development of IL services. In this way, beliefs and viewpoints emerge in an wholeness between the individual and group. Personal development is not accomplished at the expense of the group but rather as an enhancement of the group.
After reviewing Standards for Independent Living Centers -- definition of disability, self-advocacy, systems advocacy, peer counseling, and consumer control -- a pattern of interrelationships between the philosophy of independent living and tribal culture and government appear. While there are conflicts between these two philosophies, they might be merged to develop a model for meeting the needs of Native Americans with disabilities. One method for merging these perspectives to implement IL services on reservations involves an actualization process. Such a process recognizes the tremendous diversity between tribes and individual Native Americans.
In following this process, many cherished beliefs of the IL movement may change. For example, the independent living philosophy as defined by the National Council on Disability states "control over one's life based on the choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities" (National Policy for Persons with Disabilities, 1983). This definition may have to be redefined when looking at the culture and environmental factors influencing the Native American culture, especially those who choose to live on the reservation. The IL philosophy and programs may have to recognize tribal and group decision-making, rather than individual choice, as the pinnacle of tribal life. For example, some tribal organizations which could have a greater involvement in disability issues are Indian Housing Authorities, tribal health clinics, tribal educational institutions and any other tribal organizations which serve the whole tribe.
The Self Determination Act and the Rehabilitation Act have the common goal of assisting Native Americans and persons with disabilities to move from a state of dependency to being in control of one's destiny. Both Native American and disabled groups utilize the whole person concept to some extent. Even though both groups may be hindered by limited funding through various programs of the federal government, they are the only ones who can make a change and should be taking an active role in outlining their resource needs. Both groups are in the vulnerable position of again being forced into a state of dependency on the federal government for its approval to allow the person with the disability to be recognized as an individual and the tribes to be recognized as sovereign nations with each tribe having its own unique culture and traditions. Disability issues must be addressed both on the tribal and federal level if anything is going to improve the lives of the Native Americans with disabilities living on the reservation.
Also, tribal governments have to recognize their responsibility of ensuring that the needs of their people with disabilities are being met. For example, some tribal organizations which could have a greater involvement in disability issues are Indian Housing Authorities, tribal health clinics, tribal educational institutions and any other tribal organizations which serve the whole tribe.
It is imperative for the tribal governments to advocate and to protect the rights and well being of their tribal members with disabilities. They can accomplish this by becoming actively involved on a national level in ensuring the Native American representation in disability legislation and policy-making. Not only does the interest of the Native American with a disability have to be demonstrated in disability issues and policy-making decisions, he/she also has to be present in Native American legislation and policy-making decisions.
Two examples are the Native American input into the Rehabilitation Act of 1986 and the Indian Housing Act of 1988. Under Section 130 of the Rehabilitation Act, Indian vocational rehabilitation projects are funded to provide rehabilitation services for Native Americans with disabilities. Even though the language of this act limits the full impact of providing a spectrum of services to the population with disabilities within reservations, it has been instrumental in developing several nationally known rehabilitation projects for Native Americans. These include the Navajo Vocational Rehabilitation Project which has been running for fourteen years and the Salish-Kootenai Vocational Rehabilitation Project which has been expanding opportunities for people with disabilities for three years.
Under the Indian Housing Act of 1988, there is a section which addresses accessibility within housing for Native Americans with disabilities. It is up to the Indian Housing authorities to acknowledge this section and to advocate for accessible housing on the reservations. It is well known within the Indian population that there is a paucity of housing on the reservations, much less accessible housing. So it is up to the tribal members to advocate for accessible housing to tribal officials. Then tribal officials have to advocate to the Indian Housing office within the Housing and Urban Development Department (HUD). A representative from HUD has to ensure that the demands for accessible housing are known to Congress. Congress must realize that a person who is a Native American with a disability living on a reservation has to have the basic needs of adequate and accessible housing in order to survive and function.
IL advocates will face both connections and conflicts in developing IL services on reservations. A process for resolving these issues on local reservation is described. The next step is to act in a way that does not leave another legacy of unfulfilled promises.
Brown, S. A. (1986). The preventive and restorative aspects of cultural conflicts resolution through the Native Self-Actualization Model. Scottsdale, AZ: Native American Rehabilitation National Research Symposium.
Budde, J.A., J.A., Lachat, M., Lattimore, J., Jones, M.L., Stolzman, L.(1 987). Standards for independent living centers. University of Kansas: Research and Training Center on Independent Living.
Deloria, V. Jr. & Lytle, C. (1984). Nations within: The past and future of American Indian sovereignty. NY: Pantheon Books.
Denson, C. R. (1988). Independent living: Public policy Issues. American Rehabilitation, 14( 2)12-15.
Frieden, L., L. (1980). Independent living program models. Rehabilitation Literature, 41, 169-173.
Joe, J. & Miller, D. (undated). American Indian cultural perspectives on Disability. Tucson, AZ: Native American Research and Training Center, University of Arizona.
Locust, C. , C. (1985). American Indian beliefs concerning health and unwellness. Tucson, AZ: Native American Research and Training Center, University of Arizona. U.S. Congress (1989). A report of the special committee on investigations of the Select Committee on Indian Affairs of the United States Senate. Washington, DC: U.S. Government Printing Office.
U.S. Department of Commerce (undated). We, the first Americans. Washington, DC: U.S. Government Printing Office.
U.S. Department of Education (1987). A study of the special problems and needs of American Indians with handicaps both on and off the reservation. Washington, DC: Office of Special Education and Rehabilitative Services.
For additional reading:
Independent Living Center Employment Programs: Important Resources for American Indians and Alaska Natives With Disabilities 2005 Free (Posted on the American Indian Disability Technical Assistance Center site.)
Preparation of this manuscript was supported, in part, by a fellowship from the National Council on Disability, by a grant from the National Institute on Disability and Rehabilitation Research (Grant No. G0087CO228-89), and by a grant from the Centers for Disease Control (Grant No. U59/CCU803400-02).
The author wishes to thank Judy Fredenberg, Charley Leitch, Frances Miller, and Tom Seekins for their help in preparing this manuscript. Special thanks to Lex Frieden for the opportunity to write this paper.