Many people, when hearing the term independent living, probably think about the movement that started in Berkeley three decades ago with the radical notion that people with disabilities had a right to make their own decisions and life choices. At that time, many people with disabilities were still institutionalized, regardless of their function or cognitive level. Out of this movement grew the philosophy that people with disabilities (now called consumers) should have control and input into programs and services that affected their lives, and equal access to the community. Independent living is the right to control and take charge of your life. It doesn’t mean wanting to do everything by yourself or living in isolation. Independent living means having the same choices and control in your daily life that non-disabled friends, neighbors and family members take for granted. This includes taking risks, taking responsibility, and having the same right to succeed or fail.
In order to be considered an “Independent Living Center”, at least in the eyes of the federal government, an organization must meet the following criteria: 1) have a Board of Directors that is comprised of at least 51% of people with disabilities 2) have 2/3 of paid employees be individuals with disabilities and 3) provide four core independent living services. The four core services are: Information and Referral, Independent Living Skills Training, Individual and Systems Advocacy, and Peer Mentoring. Information & Referral provides an individual access to what services are available, and then helps explain how to get appropriate services. Skills Training is tailored to personal need, and may be done on an individual basis or in a group. Some examples of this type of training include managing your money, personal care, coping skills, equipment maintenance, cooking and social skills. Systems advocacy works to empower others to promote changes within their environment. An advocate is simply someone who knows the process for getting needed services, and will help you learn how to speak for yourself and gain access to those services. Peer mentoring is done through an individual with a disability who has gained a certain level of independence and community integration, and who is willing to share their experiences and knowledge with you.
In Native American culture, there typically is no word for “disability”. (Clay, 1992) A person will be described by their characteristics, such as ‘walks with a limp’ or ‘slow to learn’. As a result, most native people, when asked, will not self-identify as being a person with a disability, and will typically not seek out services identified specifically for this population. In our culture, having these types of characteristics means that we are not in harmony with the four aspects of well-being, which creates an imbalance. To be in harmony, one needs balance between the mental, physical, emotional and spiritual parts of oneself. (Joe, 1987) To be successful in providing outreach and direct services for independent living in Indian country, you need to understand the cultural concept of “wellness”. For example, in my traditional Navajo culture - health, emotional or physical problems are caused by being out of harmony or balance with nature - our spirit. Our spirituality cannot be separated from physical life, because life is considered to be holistic; one part of life cannot be separated from the whole, or the whole will suffer. When a person is experiencing ill health, emotional or physical problems, it is because the spirit is out of balance with the forces of life. Harmony can be put back in balance by an active effort, such as performing a ceremony, or any conscious activity to correct an imbalance. We believe in a spiritual life before and after our earth life. Our spirits come to earth life to learn or experience things that our spirit needs to understand. In doing so, a spirit chooses to accept the difficulties of life, including “disabilities”, in order to gain something in the spirit life. We believe that disharmony can come from three major life areas: (1) the breaking of taboos, (2) from the forces of nature, (3) from the manipulation of negative energy. (Whale, 1997) Independent living, and the independent living philosophy cannot be easily integrated into Indian Country without major adaptations which allow services to be more culturally appropriate.
In Native culture, our identity is strongly connected to our sense of place and our connection to the land. For most people with disabilities in the independent living movement, they strongly identify with being a part of the “disabled community”. The perspective for Native Americans is much different. For example, I am Indian first, a male second, and a person with a disability third. Our identity is in our cultural heritage, and the community we live in. For many people living in urban areas, or for most people of the “dominant” culture, advocacy and independence revolves around individual rights and individual decisions; in other words the person with the disability is assertive and makes all their own decisions and choices. In Native culture, decisions are made by the family through consensus after options are presented. The choices being made do not only affect the person with a disability, but the entire family and ultimately the entire community. These are just a few of the examples of cultural differences and how they affect “independent living” for Native Americans.
ASSIST! to Independence has the unique distinction of being the only Independent Living Center and Regional Resource Center for Assistive Technology on tribal lands in the United States. Our mission is to provide culturally relevant services to a cross disability American Indian population, which will enhance quality of life and community access through maximizing independence and improving functional skills. Some major barriers to basic services on the Reservation include geographic isolation, language barriers, cultural differences, lack of resource information, lack of basic utilities, and lack of transportation. For us, the assistive technology and independent living services work hand in hand. The bottom line for most people is that they want to remain in their own homes and be able to continue daily activities, whether it is herding sheep, cooking or weaving. Technology has been a bridge for many people here, which allows for an alternative way for someone to continue the same activities as before. The struggle is in providing services within the community that are respectful of the culture, and at the same time abiding by the guidelines and restraints that the funding source - the federal government - places on us.
For example, the federal government requires that you collect demographics such as county, for those individuals you are serving. However, when providing services, we are looking at the Reservation as a whole, which for the Navajo Nation includes four states. In fact, most people are not aware of the county they reside in on the Reservation. Collecting county information for us is pretty meaningless - none of the counties provide assistance or financial support. Unless this information is going to be used to appropriate some county funds for IL services on the Reservation, what is the point of taking the extra time to get this information? Another issue is the development of a CIL plan, which states what the goals are, who is responsible for doing what, and what the time frame will be for the accomplishment of those goals. This is something that the federal government requires offering to each individual who is receiving independent living services. A few of the younger people we work with are willing to develop a plan, but for the most part people are not interested and will instead sign a waiver to the plan. Several cultural factors contribute to this: 1) it is considered taboo to “predict” the future and 2) people tend to live in the moment. Also, many people are very wary of signing anything that is remotely connected to the federal government However, the federal government feels that if you have a predominant number either of plans written, or plans waived, that something is not right and perhaps you are not offering this option to consumers. The federal guidelines also require that a Center for Independent Living offer the four core services mentioned previously: information and referral, skills training, individual & systems advocacy, and peer mentoring. Are these the main types of services that American Indians need? Most people living on the Rez are in basic survival mode, lacking transportation, telephone access, and in most cases running water and electricity. So for the majority of the individuals that we serve, the needs are very basic and grounded in very simple, everyday activities. People want to be able to stay in their home, to get in and out of the house safely, to get to the outhouse safely, get down to check on the livestock, to be warm and have a means to haul water. Our experience in the community has shown that the majority of American Indians, at least in the areas that we serve, are pretty reserved, humble, and not very willing to openly talk about personal feelings or issues - even with a peer. Of course there are exceptions, but overall this is the case. When you are struggling for just basic survival, your needs and priorities are going to be different.
In order for “Independent Living” to truly take hold and be effective and productive in Indian Country, some changes need to occur within the funding sources that truly honor, respect and respond to the cultural differences that exist. The concept of independent living and the independent living philosophy needs to be presented in the context of wellness, not disability, and services geared toward helping an individual return to balance. Services offered should be reflective of cultural differences, and very dynamic so they can change to meet changing needs : accommodate needs which are “survival” based in nature but which allow the individual to return to a balanced state within the present moment - not looking five and ten years down the road. This could include such things as traditional healing and environmental interventions. These types of things would be more culturally appropriate core services to offer.
Many people might argue that if the federal government were to make changes and modifications in the guidelines for IL services for American Indians, then they would have to do it for every other ethnic minority in the United States. While we certainly don’t see anything wrong with that, there are several things that separate American Indians from not only the general population, but from every other ethnic minority as well.
1. American Indians are the only ethnic minority that are required to carry documentation which proves they are Indian - a Certificate of Indian Blood, which states which Tribe the individual is enrolled with, and what quantum or percentage of Indian blood they carry.
2. American Indians are the only ethnic minority that have designated boundaries imposed that determine where they are able to live - the “Reservation” - and be governed by their own people.
3. Indian Nations are sovereign governments, recognized in the U.S. Constitution and hundreds of treaties with the U.S. President. American Indians are the only ethnic minority that have sovereign status; their own Tribal government which is considered a sovereign Nation; completely separate from the United States government.
4. American Indians are the only ethnic minority that have their own National Congress. The National Congress of American Indians was founded in 1944 and is the oldest and largest tribal government organization in the United States. NCAI serves as a forum for consensus-based policy development among its membership of over 250 tribal governments from every region of the country.
5. American Indians have a higher incidence of disability, estimated at 26%, than any other group in the United States. (CDC, 1994)
Most of these differences are the results of policies imposed by the Federal Government, that do distinctly separate American Indians from other minorities. It stands to reason then, that guidelines for services under programs funded through the federal government, should also be distinctly separate and more relevant culturally. Right now, that is not the case for Independent Living Services. We are forging new ground in this area, and working hard for systems change at the funding level!
In the meantime, however, we work to provide the most culturally appropriate services we can that our community members request. We then translate these services into categories which reflect the requirements mandated by the federal government for services and demographics for data collection. Sometimes it seems like a lot of extra work, but we have to do it until we are able to break through these barriers at the funding level. In the meantime, Walk in Beauty!
Clay, Julie A., Native American Independent Living, Rural Special Education Quarterly (1992), Vol. 11:1, pages 41 - 50.
Centers for Disease Control, Minority Burden of Chronic Disease, U.S. Department of Health and Human Services (1994), Minority and Ethnic Groups.
Joe, Jennie and Miller, D., American Indian Perspectives on Disability, Monograph Series (1987), Native American Research and Training Center, University of Arizona, Tucson, Arizona.
Whale, Ronald. Assessment of the Needs of Native Americans with Disabilities in the Tuba City Region of the Navajo Reservation (1997), Dissertation.