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Fall 2000 Table of Contents
Versión Español de este artículo (Spanish Version)
By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach, with Edwin Carter, Teen, Dallas, TX and Rosie Yanez, Mentor, El Paso, TX
A seminar entitled "Self-Determination: Creating a Path to the Future" sponsored by the National Technical Assistance Consortium for Children and Young Adults who are Deaf-Blind (NTAC), took place in Columbus, Ohio on July 29 _ August 4, 2000. It was held in conjunction with the 25th Anniversary Conference of the American Association of the Deaf-Blind (AADB) . The conference was attended by approximately 350 people who are deafblind, as well as 650 interpreters, support service providers (SSPs), conference facilitators, presenters, and interested observers.
At the seminar, a group of 21 deafblind teens/young adults and young adult mentors from 9 states explored such questions as: What does self-determination mean to me? How have deafblind adults become self-determined about their lives? How can I become more self-determined about my own life? What interests, dreams and challenges do I share with other deafblind teens and young adults? What does it mean to be a mentor?
Several three-person teams participated in the training. Each team included a teen/young adult, mentor and state deafblind project representative. Edwin Carter (teen/young adult) from Dallas, Rosie Yanez (mentor) from El Paso and I represented Texas. Teams that were selected agreed to attend the seminar, develop an Action Plan to support the teen/young adult in becoming more self-determined, then maintain contact for a year and participate in follow-up activities using e-mail and/or the Internet.
Brian Abery, from the University of Minnesota, defined self-determination to the group as "Living the way I want to live instead of how others expect me to live," and "Taking the amount of control over your life you want, in the areas you want to control." There are many short term and long term decisions that people make to control their lives. Most people don't want to be in total control of every part of their lives, but may want to share control with family, friends, and others. Letting someone else take control of certain things, however, might mean accepting responsibility for other things. Giving up control may also require compromise. For example, letting someone else cook the meals might mean you have to do the dishes or take out the garbage, and you may also have to eat foods that are not your favorites.
Having control over decisions feels good, but may also be scary sometimes because it means accepting responsibility for decisions that might not turn out well. It can be frustrating and depressing, though, for other people to make all the decisions, even with the best intentions. Everyone needs opportunities to make decisions for themselves, even if that might mean making mistakes.
Craig: What are some things in your life that you want to control?
Edwin: I already have independence in the dorm, and I control management of my time. I want to have more control about traveling in Austin and other places.
Rosie: I want to be assertive and not have to depend on other people. I must stand up for myself. I don't want to fail in college because of poor services. I can't control what services are provided or offered, but I can advocate for what I think I need. I also want to have better control of my temper because my own attitudes will influence how other people respond to me. I want to be an advocate for other people with Usher Syndrome.
Maricar Marquez, from Helen Keller National Center (HKNC) in New York emphasized that, in order to be self-determined, it's important to have the necessary skills, knowledge, attitudes/beliefs and supports. Susie Morgan, with NTAC, noted that skills in areas such as communication, independent living, orientation and mobility, decision making, self-advocacy and self-regulation are essential. Knowledge of rights and responsibilities, educational options, resources and systems, and society (on a local, national and global scale) are also important. A self-determined person's attitudes and beliefs are indicated by a positive outlook on life, self-confidence, high self-esteem, a sense of determination, and internal control. Supports can originate in different places. For example, family members and close friends might offer emotional support. Communication support might come from support service providers (SSPs), interpreters or interveners. Access to technology and enhanced physical accommodations might provide the necessary educational support. People who want to become self-determined about something must identify the skills, knowledge, attitudes/beliefs and supports they already have, and those they need.
Following Maricar's presentation, a panel of deafblind adults was introduced. Each adult gave a brief autobiography to the group, then individual panel members met with the teams from different states. They talked about the skills, knowledge, attitudes/beliefs and supports they have and those they are still developing or acquiring.
Craig: What skills, knowledge, attitudes/beliefs or supports do you have to be self-determined? What do you need?
Edwin: I need to learn to stop waiting and do things now.
Rosie: I have the skills to speak up for what I believe in, but I also need to be around other deafblind people who understand and support me. At AADB people weren't focusing on my Usher Syndrome or my vision and hearing problems. I could be myself. I need role models who are good self-advocates and mentors. That will also help me be a good mentor for Edwin.
Jerry Petroff and Cindy Ruetsch, from the New Jersey Technical Assistance Project, guided teens in the group through a step-by-step process that included dreaming about "What I can be," to determine which parts of those dreams are realistic and figure out how to reach them. When dreaming about the future it's important to think big. Without dreams a person isn't motivated to move ahead and may not know in which direction to move. Visions move people closer to their dreams, within a time frame of five to ten years. To help clarify a vision someone can say, "In order to reach my dream, I must/should/can...," then ask, "Is my vision positive? Is my vision possible?" If both questions can be answered "Yes," the next step is to identify three goals related to the vision. These goals are smaller pieces of the vision that can be accomplished within a year. It's also important to know what people and supports or resources are necessary or can be helpful in completing those goals. Three "next steps" related to each goal are then selected to be achieved in one or two months.
After Jerry and Cindy's explanation of a step in the planning process, each three-person team met to help its teen develop that step. By day's end, the teens all had Action Plans of goals and specific steps to complete within the coming year that will help them move toward their individual dreams and visions.
Craig: What is one of your dreams and your vision to reach it? What goals and "next steps" will you accomplish to move closer toward that vision and dream?
Edwin: I want to own my own technical or computer business, but first I'll need to attend a technical college. I graduate from TSD (Texas School for the Deaf) next May and plan to start college the following fall. I'm getting Bs in my high school classes now, and I've already received application information from two colleges.
Rosie: I want to share my experience and be a teacher with deafblind children. I can make a big difference. I'm going to college now for my degree. In the next year I want to improve the interpreter program at my community college for myself and for other students who are deafblind. I'll need to identify the issues first, and then start looking for solutions.
Mentors are essential members of the three-person teams. All of the mentors at the seminar participated in additional training, to learn what being a mentor means and to discuss ways that mentors can help teens/young adults achieve their dreams.
Mentors draw from their own experience and share it with others who find themselves in similar situations. Mentors give empathy, support and understanding. Mentors are trustworthy advisors who do not judge others as right or wrong, but remain open to different perspectives and beliefs. Mentors may not be able to solve other people's problems, but they are good listeners who offer suggestions and ideas. Mentors also help others become good self-advocates who are knowledgeable about issues and their rights.
Craig: Rosie, what does being a mentor mean to you?
Rosie: I want to be someone Edwin can look up to like a big sister... to answer questions, give advice and help him feel good about himself. We can help each other.
Craig: How will you help Edwin continue to make progress toward his dreams?
Rosie: Not to bug him, but to keep in touch and become a valuable person in his life.
Craig: Edwin, in what ways is Rosie a good mentor?
Edwin: Her experience will help me a lot as I plan my future. We work as a team.
Rosie: I remember my first experience with a deafblind adult. A long time ago Kim Powers came to El Paso. My Mom was driving Kim to the airport and signing in her hand. Kim was so happy. I was sitting in the back seat watching and thought if she can be happy, so can I. You can be happy or sad, but happiness is possible.
While seminar participants attended daily training sessions about self-determination, time was also set aside for tours and other more informal get-togethers. These occasions provided opportunities to become better acquainted with each other, as well as to meet, work, and relax with deafblind adults. The deafblind adults attending this conference were impressive role models for living self-determined lives.
By the end of their week together, teens and mentors had developed and strengthened relationships among themselves and realized that they are members of a larger deafblind community. While planning gets underway for the next national AADB Conference in 2003, discussion has also begun about creating an affiliated organization of and for deafblind teens/young adults. Participants of this year's seminar on self-determination may become the nucleus of a planning committee for a teen/young adult component at the 2003 Conference.
Craig: What did you enjoy most about the Conference?
Edwin: I met many interesting deafblind adults.
Rosie: I enjoyed meeting other deafblind teens and mentors and sharing experiences with them.
Craig: Will you continue your involvement with other participants from the Seminar?
Edwin: I'm doing a lot in school (homework, football, work, etc.), but I want to stay involved.
Rosie: Yes. I already got e-mail from Andria in Oregon and Theresa in California.
Craig: What can we do to organize deafblind teens/young adults in Texas?
Edwin: Start a support group in Texas for teens and young adults. Join AADB.
Rosie: Keep in touch. Find places where teens can use computers. Get an eCircle going. Raise money every year for a fun trip together.
As a participant in NTAC's "Self-Determination" Seminar and as a first time attendee of an AADB Conference, I was profoundly impressed by the high level of energy, commitment, mutual support, optimism and information offered by everyone there. I strongly encourage deafblind teens and young adults in Texas to meet each other at a local, regional, and state level. They should also consider becoming involved with a national organization such as AADB.
Editor's note: If you are interested in self-determination for deafblind teens and young adults, contact Rosie at firstname.lastname@example.org, or Edwin at TheBull16@juno.com. Edwin and Rosie will be speaking about self-determination at the statewide Deafblind Symposium in Dallas, February 16-17, 2001. Mark your calendars.
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