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James R. Skouge, Ed.D.
Assistant Professor, Special Education
University of Hawaii
Mary Kelly, Ph.D. candidate
Indiana University, Bloomington
American Samoa Department of Education
Teacher/Coordinator Community Transitions
Monroe County Community School Corporation
For the past decade the Center on Disability Studies (CDS) at the University of Hawaii has engaged in partnerships with persons with disabilities and their families to produce video documentaries or "stories" related to making life work. These video stories have been employed within graduate and undergraduate training programs focusing on disability and diversity studies, using an "inquiry based" model of instruction. Many of the stories have been broadcast on Hawaii Community Television and shared at national and international conferences. One strength of the model is that persons with disabilities and their families actively participate as co-producers, with their stories told in their own voices.
In recent years we have moved beyond the documentary form of story-telling. We are now using video to promote "visualization" and "self modeling." The techniques are variously called Creating Futures and video feedforward (see Dowrick 1999). In this model, we create visual stories or "plays" in which persons with disabilities explore alternative futures and act out their dreams. Variations of video feedforward techniques have been used in sports for some years, in which videos are carefully edited to show athletes performing at peak levels. It is our experience that video feedforward can powerfully impact the sense of control and self-determination of the persons involved. It also creates compelling "visualizations" that may impact public awareness among public school and university students, policy makers and the community at large.
We propose presenting five short videos, two produced in Hawaii, one in American Samoa, and two in Saipan. One video demonstrates our "first person" documentary techniques in which Halona, a "local" Hawaiian with a spinal cord injury, shares a day in his life at home and in the neighborhood. Halona's video has been showed widely on Hawaii community television. A second video was produced by Kalani, a man with cerebral palsy who speaks through an electronic talker, to present his hopes and dreams. This Creating Futures video was shown to members of the Hawaii state legislature to impact social policy regarding assistive technology services in Hawaii. (*The compelling story of this video is shared below.) A third video was produced by Rudy Steffany in American Samoa. Rudy is quadriplegic from a spinal cord injury. He is a special education teacher in American Samoa and a renowned mouth painter. It is a humorous video depicting a creative approach to problem solving on a hot day, when the lift on the wheelchair van wouldn't work, and everything seemed to be going wrong. The last two videos were produced in Saipan, celebrating 3 teenagers with cerebral palsy, using powered wheelchairs. These video "plays" depict inclusion and community integration activities never before seen in Saipan, including Carolinian dancing and chanting and a wild and raucous basketball game. All of these videos create personal contexts for self determination and empowerment, as well as public contexts for education and social change.
The UH Center on Disability Studies is engaged in family supports, education and systems change in Hawaii, American Samoa (Polynesia) and many island entities in the Western Pacific, including the Republic of the Marshal Islands, the Federated States of Micronesia, Guam, Saipan and Palau. Our "person centered" model for story telling resonates among Pacific Islanders. We would appreciate the opportunity to share our work and engage in dialogue with educators at the AERA conference interested in cross-cultural communications, media as curriculum, village wisdom, and "giving voice" to disenfranchised groups.
One of the stories that we propose to share is described here in some detail. It is a compelling story of the power of "video forward" to change perceptions and behaviors at the individual and systemic levels. This story took place 3 years ago on the island of Oahu.
Kalani's Video Self-Advocacy
Kalani is an intelligent, middle-aged man who was raised in Hawaii's (recently closed) large institution for people with disabilities. His diminutive body is contracted so that he has difficulty moving his legs, arms and fingers. All that he can dependably control is a slight movement of his head to the right and left. Kalani does not speak in the usual sense of a voice. Last year, Kalani moved into a foster home in the community. His greatest wish is to have more control over his life.
Several years ago Kalani enrolled in a self-advocacy program sponsored by the Hawaii Developmental Disabilities Council (DD Council). Once a month for a year Kalani joined other people with disabilities and sometimes their family members for weekend retreats to learn about civil rights and responsibilities and how to advocate for social change. Kalani attended the retreats with an attendant who tried her best to communicate for him by using a letter board. The attendant scanned her finger across the rows and columns of the letters while Kalani nodded or blinked to spell-out his messages. The process was arduous. Most often Kalani sat silently and listened. Everyone liked him. He always seemed cheerful. He needed an augmentative communication device, everyone agreed.
Previously, Kalani had an electronic talking device, which he could activate with a head switch. The talker had broken and the Department of Health had not effectively responded to requests to repair or replace it. Kaolani was without a voice. The story that follows demonstrates the power of a personal video to promote systems change.
Each year the Hawaii DD Council hosts a legislative breakfast at the State Capitol in which legislators are invited to meet the disability community over breakfast to listen and learn about issues of importance to people with developmental disabilities. In preparation for the event, the DD Council approached our Center on Disability Studies, a community response program (see Dowrick, 1998), to see if a video might be produced to give voice to consumers who otherwise would not be heard.
A decision was made for Kalani to be the producer of his own video using a video futures strategy. Because Kalani could not speak, and because he no longer had access to augmentative communication equipment, a $6000 device was borrowed from the Prentche Romich Company and programmed by Kalani and his aide. The programmed messages included 50 personal statements in Kalani's first person voice, presenting to the legislators his interests and loves, hopes and dreams, and needs and concerns. He told them how he enjoys taking his friends to supper and listening to Hawaiian music, his desire to live in his own apartment and manage his own money, the local foods he enjoys, his love of shopping to buy little things for his friends and, most of all, his need for an augmentative communication device so that he can begin communicating once again with the world.
On the morning of the Legislative Breakfast, Kalani was in attendance - reclining in his overstuffed wheelchair, unable to sit up straight because of contractures in his legs and back. He was all smiles. The 100 or so invited guests had eaten their breakfasts. The speeches were over, the lights dimmed. Suddenly, larger than life, filling an entire wall of the conference room, Kalani took the floor, his voice booming through the amplification system. The politicians saw him voting at the polls. Voting for the opposition party, no less! They saw him clicking his little head switch as his messages scanned on the face of the device. But most of all, they heard a man passionately and honestly speaking for himself. Three times Kalani boomed in his electronic voice "I want and need a communication device. I want and need to live on my own. Hear me."
Then the lights went up. The room was silent. Perhaps the audience was not sure what they had just seen and heard. "Who was this man?" Then Kalani was introduced. "Ladies and gentlemen, please meet Kalani. We are honored to have him here this morning with us." The people began to clap. Kalani became real to others present. He had been heard. Then the senators and the representatives began a barrage of questions, all directed at Kalani. "What is it you need?" "Why don't you already have it?" "What are these 'talkers' anyway and how much do they cost?" All the questions were answered by Kalani's circle of friends. Kalani sat silent, smiling and watching. The device he had used in his video had since been returned to the company that lent it. Nonetheless, his communication had been received. The Department of Health was directed to cut through any red tape to get this man a talker as soon as possible.
Within days, Kalani had contacted a lawyer with the Protection and Advocacy Agency. He had seen enough. He was empowered.
We would appreciate the opportunity to share our work and values.
Bandura, A. (1997) Self-efficacy: The exercise of control. New York: Freeman.
Ben, K., Caires, J., Connor, M.E., & Dowrick, P.W. (1999). Video futures: A new frontier. Anchorage, AK: Center for Human Development, University of Alaska Anchorage.
Dowrick, P.W. (1999). A review of self modeling and related interventions. Applied and Preventive Psychology, 8, 23-39.
Dowrick, P.W., Skouge, J., & Galbavy, R. (1999, June). Creating futures: Video empowerment in under-resourced communities. Worshop presented at biennial conference of Society for Community Research and Action, New Haven, CT.
Dowrick, P. & Skouge, J. (2001). Creating Futures: Potential of Video Empowerment in Post-Secondary Education. Disability Studies Quarterly (Vol. 21 #1).
Kelly, M. & Skouge, J. (1997-1998). Through the Viewfinder - from Makua to Waipahu. Waianae, HI; Olelo Community Television. [TV series]
Skouge, J., Radtke, R., Klemm, B., Zangerle, A. (2000). Oceans of Potentiality: Empowering Youth with Disabilities to Create Futures. Impact, University of Minnesota Press.
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