By Bartlett, Sue; Lorenz, Laura; Rankin, Theresa; Elias, Eileen; Mustafa, Ruman; Weider, Katie
The Exceptional Parent , Vol. 41, No. 3
The following article is the eighth of a multi-part series on traumatic brain injury. The article is a continuation from part A of "Looking Back, Looking Forward," published in Exceptional Parent's February issue. TBI has received limited national attention and support. TBI is also the signature of the military conflicts in both Iraq and Afghanistan. This series is published by the Traumatic Brain Injury -Resource Optimization Center (TBI-ROC) and its Advisory Group, facilitated by JBS International, Inc. The TBI-ROC is a recognized source and leader for advancing national attention to the myriad of policy, research, practice and service needs supporting of civilian and military individuals who incur a TBI as well as their families.
Managing the cost of rehabilitation for a child, teenager or young adult who has incurred a TBI can be supported through the use of an ATD. Theresa Rankin, a nationally recognized TBI advocate who incurred a brain injury 41 years ago, was able to use ATDs only through her dedicated advocacy and that of her family, friends and providers. Gaining access to ATDs was a challenge. However, ATDs were effective in helping Theresa complete her education, pursue competitive employment and improve her quality of life. Her struggle to gain access to an ATD lasted more than 30 years. Theresa was able to gain access to an ATD through funding from the Virginia Department of Rehabilitation Services.
The following describes the benefits a particular ATD--Participatory Visual Methods. It can be a cost-effective tool that all families can use to help their child re-integrate into the community.
Childhood and adolescence are powerful times for shaping the development of identity. All young people struggle to be seen as resources in their families and communities. Brain injury can make the struggle that much harder. Providing opportunities for young people with brain injury to advocate for their perspectives on living with brain injury and achieve positive change can have lasting effects by planting seeds of self-worth, confidence, and success. One example of such an opportunity is photovoice, a process that puts cameras in the hands of young people with a brain injury. They can take photographs of their lives, discuss them with others, write captions, and develop outreach products, from personal binders to websites, exhibits, and presentations that raise awareness and advocacy for perspectives with policymakers, providers, educators, communities, and peers. Photovoice engages young people in reflecting on and advocating for their perspectives, an increasing way to "give voice" to people whose perspectives are often ignored.
An advantage of photovoice and other "participatory visual methods" that use visuals (drawings, photographs, collage, murals, or video) is their flexibility. They can be used by a young person working alone, in collaboration with a parent, sibling, or friend. Photovoice can be used to explore a range of topics, from personal experience to community resources and problems related to disability, health care, and/or education; from the simple--to reflect and advocate within a family or small group of friends, providers, or community members, to the ambitious--to reach policymakers worldwide through a website or video on the Internet. Photovoice topics and purposes may grow over time. Young people in many countries with TBI who have participated in photovoice often sign up to support their personal journey of healing. As they realize the positive impact their pictures and captions are having on each other, they become motivated to raise awareness about TBI with people who make decisions.
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As a parent, in considering the steps involved in doing photovoice, as seen in Figure 1. First, discuss photovoice with the child and determine a topic to explore using a camera. A good way to start is by answering the question: "What is it like to live with a TBI? …