"Reality is Mud" - Native American Forum on Disability Issues

Native Americans concerned with disability issues gathered on April 15, 2004 at the Hyatt-Regency Tamaya Resort and Spa on the Santa Ana Pueblo near Albuquerque, New Mexico for a public forum on "Disability Matters in Tribal Communities." The four-hour forum, designed to address concerns of American Indians and Alaskan Natives with disabilities, was scheduled as the final event of the National Council on Disability's quarterly meeting that began on April 13, 2004. NCD is an independent agency that proposed and drafted the Americans with Disabilities Act of 1990 and is composed of 15 members appointed by the President of the United States and confirmed by the U.S. Senate. The agency is charged with promoting policy, programs, practices and procedures that guarantee equal opportunity for all persons with disabilities regardless of the nature or severity of the disability, and to empower them to achieve economic self-sufficiency, independent living and inclusion and integration into all aspects of society.

Treva M. Roanhorse, a member of the Navajo Nation and President of the Consortia of Administrators for Native American Rehabilitation (CANAR) from Window Rock, Arizona gave greetings and an overview of the myriad of current issues facing American Indians and Alaskan Natives with disabilities. These issues include the need to advocate for services near the reservation, to push for cooperative agreements with state agencies, to guarantee that tribes receive continuation of vocational rehabilitation funding without having to apply every five years, and to develop business plans for self-employment. Roanhorse also emphasized the critical need for continued professional development and childhood prevention and intervention programs.

A statement of the forum's purpose, that is, to "lift every voice" and to create dialogue to insure that members of the National Council on Disability hear authentic perspectives" constituted a charge to the audience by Council Member Milton Aponte. A public comment period and group discussions on health care, independent living, educational and vocational rehabilitation brought forth a multiplicity of voices and a range of genuine emotions and perspectives.

Increase exposure to independent living

Joseph Ray, of Zuni descent and a member of Laguna/Acoma Pueblo, dreams of one day owning a gallery in Washington D.C. He shared elements of his personal story related to paralysis that resulted from a car accident. Up to age 24 he engaged in learned self-destructive behaviors. "Becoming paralyzed saved my life," Ray angrily revealed. He passionately decried federal defense spending and expressed the need for a National Council on Disability commitment to programs that will address social issues on a deeper level. Ray believes it is important to educate tribal members to better understand the concept of independent living. Self-esteem issues and discrimination against those in wheelchairs warrant attention as well. He called for council members to hold a public forum in his community in order to truly obtain a grassroots perspective. "Reality is mud; reality is falling to the ground..." Ray exhorted.

Demand for services in rural communities

Improved road conditions, access to services and transportation issues plague many tribal communities. Orie Medicinebull, a Western Monche single mother whose Northern Cheyenne husband, Morris Medicinebull, died in 1993, lives in the rural community of Auberry in central California. She says, "more money is needed to help children stay and receive services near their families."

Her 17 year old daughter, Precious Sunset, was diagnosed at birth with Monosomy 9 P, a rare chromosome anomaly and has heart, kidney and other health complications. Although Precious Sunset lives where her great-great-grandfather worshiped and prayed, she must travel an hour to a health center in Clovis for general healthcare and three hours to the Shriner's hospital in Sacramento to receive services for scoliosis. Precious Sunset maintains a pleasant, positive attitude, her mother says. Still, with scoliosis, "riding is not easy."

Medicinebull believes that public forums such as this one offer opportunity for important dialogue. However the forum needs to be scheduled for at least one day or held in different regions to make them more accessible. Additionally, Medicinebull believes it would be helpful if the National Council on Disability gave some attention to dispelling stereotypical and negative images of First Americans. She points out that statistical data which reports smaller numbers of American Indians in comparison with other groups allows the general public to conclude that the needs for special services are small, when in fact, the opposite is true. "The need is great."

In her own life Medicinebull emphasizes the importance of prayer and a lot of advocacy. She serves on the board of directors for a statewide agency, Protection and Advocacy, Inc., and was appointed by Senator John L. Burton.

Desire for independence

In the health care and independent living discussion group, Christopher Luther, a member of Laguna Pueblo whose disability began in 1975, also echoes the difficulty of obtaining services in remote regions caused by poor roadway conditions. Luther, who previously worked for Vocational Rehabilitation (121 projects) in Arizona and New Mexico, uses a wheelchair and works now as a PBX operator. He reports that "often roads are like riverbeds." This condition essentially amounts to limited or no transportation, which makes services outside the community inaccessible and obtaining employment almost impossible. Frequently help is needed with filling out forms and many do not have access to telephones, email or fax machines.

Luther emphasized that "people really want to be independent." He would like to see monies earmarked for transportation for persons with disabilities. He also indicates that community health representatives need to improve efforts to outreach to the community and service providers need to become more sensitive to delivery of services in a timely manner. The lack of such fosters depression. Luther gave a personal example of one bout with depression in which he received no help, due in part to a lack of cultural awareness and sensitivity. Service providers who understand Native American culture are critical. Luther feels that more representation of Native Americans on the National Council is vital.

Luther agreed with Roanhorse's point regarding the discretionary competition for funding, finding it essential that American Indian Vocational Rehabilitation programs be refunded without tribes having to compete for monies. "There needs to be some stipulation in the law that allows for the continuation of a program without the necessity of reapplication. Smaller communities expend energy in the reapplication process and still don't know if they will get refunded." Luther notes that while reapplication is still the norm, those who write plans must be creative within traditional guidelines.

He also noted the significance of family support. At age 52, Luther said he speaks from an older perspective. "Family members must remember to say to each other, 'love thyself.' One of the first things is to lift up the spirit. Otherwise, we're spinning wheels."

Grace Baca of Santa Ana Pueblo is a member of a supportive family. She accompanied her blind brother, Dean, a telephone operator to the forum and has a mother who is a double amputee and suffers with diabetes. Baca's father, Clemente, who regularly transports Dean to work, also attended the forum.

Increased community outreach

Baca feels the need for more formal and structured outreach to her community about available resources. "Local newspapers, television and radio stations, including 'Singing Wire,' (KUNM) at the University of New Mexico should be informed of forums such as this so that more Native Americans may learn about such things." Baca learned about the forum through word of mouth: that is, from a friend who works in the Albuquerque Independent Living Center.

Baca seemed quietly adamant that persons not be sent long ways off the reservation in order to receive services. "Indian people want services where they live, where they have grown up, where they practice their religion." She is also concerned that services not be provided in old, dilapidated buildings that do not meet health and safety guidelines. She also recommends more tailoring of programs according to age differences for young, middle-aged and elderly person with disabilities. Some improvements in travel conditions have occurred since tribal administrators and the Bernalillo County 911 communication system authorities collaborated to assign road signs and residential addresses in her village almost six years ago. Emergency vehicles no longer find it difficult to locate a person in crisis.

Baca, like Medicinebull, believes it is crucial to schedule forums such as this one for longer periods of time. Baca would like to see a public forum last for more than one day in order for the perspectives of more people to be heard. She emphasizes that today's public forum is a beginning dialogue which she would like to see continue. Ideally, Baca would like to see an intertribal working advocacy group composed of the nineteen pueblos in New Mexico and all Navajo and Apache from Arizona, Colorado and Utah.

Employment concerns

In the education and vocational rehabilitation group, Doris Dennison, a member of the Navajo Nation, who lives in Tohatchi, New Mexico, is an Independent Living Specialist with a spinal cord injury, employed since October 2003 with the San Juan Center for Independence in Farmington, NM. Dennison's injury resulted from a car accident in 1986 in which she lost her one-month-old son because he was not in a car seat. After her injury, Dennison utilized the tribal VR program through the Office of Special Education and Rehabilitation Services (OSER) and the state DVR. Today she provides community awareness and injury presentations, offers peer mentoring and support and makes referrals to both VR programs and to Precious Life, a self-employment arts and crafts incubation program.

Precious Life is funded in part by the Navajo Nation and is available to Navajo with disabilities, though utilized mainly by those from New Mexico and Arizona. The Precious Life Gift Shop located in Rio West Mall in Gallup, NM provides individuals with disabilities an opportunity to bring their work from home and sell it.

The potential for people to become successful or gainfully employed through this endeavor is limited because of transportation issues. Many persons do not have personal vehicles and cannot utilize gift shops, get to shows to display work or obtain needed services to help with their endeavors. Often people must travel 300 to 400 miles.

The Navajo Nation has a transit system, but services must be requested two weeks prior to the ride date.

An additional obstacle to the success of the Precious Life program lies in the fact that vocational rehabilitation system seems less interested in funding self-employment. "Arts and crafts are seen as just a hobby which means that a person must transition out in three months." Dennison reported. This means that individuals are confined to their homes to sell what will sell. She observed that those involved in this program tend to fall back when difficulties arise in their lives and need a lot of peer support to keep going.

Dennison reiterated: "there are only two Independent Living Centers: ASSIST to Independence and the San Juan Center for Independence near the Navajo reservation that are working to help with independent living services. This plays a big part in the outcome of successful self-employment or employment for persons with disabilities."

Self-determination

A member of the Navajo Nation, who will be called simply KayPea, is now a case manager supervisor who works in early intervention with children from birth to age 10 (depending on the doctor's referral.) In the education and vocational rehabilitation group discussion KayPea related that she is "kind of an example," having experienced a serious back injury in the late 1980's. Prior to her injury she was self-employed selling her artwork. She had no knowledge of vocational rehabilitation services.

KayPea, who was offered SSI and a wheelchair after her injury, "just looked at the chair and did not want to use it." She was told that she would be incapacitated for the rest of her life. She also needed speech therapy for stuttering. It was very hard for her; however, self-determined, she did 100% of her own physical therapy.

"I didn't lean on vocational rehabilitation. I was determined to walk again. I could not walk up or down the stairs. I felt like a Jell-O. I started praying a lot. I walked up and down the hill. I was walking like a baby. Every month I might have a migraine attack. I was determined."

KayPea designed a personal flow chart to help achieve her goals. Her flow chart includes 8 steps.

• Educate self to work/ seek employment
• Do art work
• Sell art work
• Save money
• Pay for college
• Get degree
• Work in community
• Finally, you have your life of success/work in community

"I trained myself to attend as many classes as I could in order to receive my degree. I did not lean on any of the resources like for money. I earned my own money and paid for my classes. I struggled with expenses, but somehow I made it through."

KayPea, who continues to occasionally show her sand painting, declares "I'm walking again. Life is precious. I'm thankful for myself. All that's left is the scar on my back."

When asked about follow-up after this forum, KayPea, like Baca, indicated the need for more efforts to disseminate information. KayPea would like to see a huge public awareness fair. It is important to provide information on all resources accessible to Native Americans. KayPea says she does not want persons with disabilities to feel as though they are alone.

Consensus

Among the approximate 120 Native Americans who attended the forum, there seemed to be a consensus about the service needs for American Indians and Alaskan Natives with disabilities. There exists a strong commitment to systems advocacy and cultural representation on policy making boards. It is necessary to establish greater cultural awareness among service providers. Tribal governments need additional education in understanding the provision of services. State agencies need to become culturally aware. Legislation to increase and insure funding for disability programs and the Indian Health Service needs to be instituted at Federal and state levels.

These raised voices resounded with urgency; from Ray's authentic anger to KayPea's sense of fulfillment. American Indians with disabilities who reside in rural or remote regions with unpaved roads cannot be ignored. The challenge is clear. Reality means being intentional; to listen, to hear, to do; that is, to change attitudes, policies, programs, practices and procedures in innovative, beneficial ways for those who live daily with disability. Reality means falling into the mud of discomfort or even discontent associated with disability to search for hopeful solutions. Dialogues that offer grassroots perspectives must continue!

The author's writings have been published in Honey Hush! An Anthology of African American Women's Humor, Callaloo, Obsidian, The Southern Review, New Virginia Review, The Sun Magazine, Xavier Review, Richmond Free Press, Coloring Book: An Eclectic Anthology of Fiction and Poetry by Multicultural Writers, The World Book of Hope & The World Healing Book, and elsewhere. Currently she is circulating an inspirational fantasy for young adults, Promise, and a color illustrated personal growth text, Journey Within: A Healing Play Book, and is at work on Redemption, a collection of short stories.

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