I Linå'lå-ta OUR LIFE May 10, 2010 • Vol. 4, Issue 2 Administration on Developmental Disabilities Tri-Agency Page 1 Church Provides Fellowship to Deaf Community Island residents who are deaf are welcome to participate in services at any place of worship on Guam. Some of the services have interpreters, who take what is communicated verbally and translate the information for individuals who are deaf, using various forms of sign language. There is, however, one church where sign language is the exclusive mode of communication used by the church leader and the entire congregation. The Guam Deaf Christian Fellowship Church, located on the second floor of the Boon’s Building in upper Tumon, caters to the religious and spiritual needs of about 27 deaf teens and adults. Missionary Bienvenido “Ben” Ilustre, who serves as the church leader, started the church in 2001 with the assistance of his wife, Normie Ilustre, who coordinates and teaches Sunday School and two deaf adults from Korea. Regular attendees of the services come from diverse backgrounds and ages. Two thirds of the congregation is equally comprised of Chamorro and Filipino men and women, with the remaining third originally from Korea, Palau, Chuuk, and Pohnpei. These representative groups range in age from late teens to 60’s.... While all the participants communicate using sign language, the sign systems they bring to the church are different. Korean Sign Language and Filipino Sign Language are different from American Sign Language. Through trial and error, hard work, patience, and a good sense of humor, members learn a common system based on American Sign Language, under the guidance of volunteers. The schedule of services includes Sunday Worship Service at 11:30am and Sunday School Class at 2:00pm. Wednesday Bible Study and Prayer takes place at 7:00pm. Friday Night Prayer occurs every two weeks at 8:00pm. Photos with caption: Page 1 Members of the Guam Deaf Christian Fellowship Church sign a hymn during a recent service. Page 2 Members of the Guam Deaf Christian Fellowship Church (standing) recently welcomed visitors from the mainland. Text in colored box: Guam Deaf Christian Fellowship Church, 201 Boon’s Building, 127 North Marine Drive Upper Tumon. For more information contact Missionary Ilustre via email at ben_ilustre@yahoo.com Page 2 Photo with caption: DD Awareness Month “Bowling Bash” Commemorating Developmental Disability Awareness Month, the Tri-Agency Partners (Guam Developmental Disabilities Council, Guam Legal Services Corporation-Disability Law Center, University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (Guam CEDDERS)/Guam System for Assistive Technology) hosted a Bowling Bash on March 20 at Central Lanes. It was an inclusive recreational activity for individuals with developmental disabilities and their families to have fun, socialize, and connect with each other. Page 3 The Blind Leading the Blind By Lynn Tydingco The blind leading the blind... how is that possible? Not only is it possible, it is a reality. Individuals with disabilities sometimes feel that they have to make extra efforts in order to function in the community. They tend to feel depressed, isolated, and dependent on others to survive. BASTA UMBRE!! NO MORE!!! DESTROY THAT STIGMA!!! In March 2009, University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (Guam CEDDERS) facilitated a Self Advocacy Workshop for individuals with disabilities. Ginger Porter facilitated the workshop and unleashed a trained and educated group of individuals with different disabilities who have bonded together and formed a tight knit support group who call themselves “THE SUPERFRIENDS.” The members who are blind or visually impaired began networking with each other, sharing experiences, information, assistive technology, moral support, and social activities. Among them is Lee, who was diagnosed with Retinitis Pigmentosa in 1984. Lee’s loss of vision was gradual. She was employed as a Media Technical Assistant at the College of Agricultural and Life Sciences at University of Guam. She was tasked with photographing samples ranging from the soil pits in Palau and the pig castrations in Mangilao to diseased banana plants. Lynn, another member, was visually impaired due to Congenital Nastagmas since birth. Lynn has a background in finance, sales, event promotions, and computer software training. Lee and Lynn were classmates and were reacquainted after thirty years through “THE SUPERFRIENDS”. Neither one of them knew that the other was visually impaired and would eventually become blind. Andrew, who is Lynn’s younger brother, also has Congenital Nastagmas. Andrew is a computer technician, a vendor for products for the blind and visually impaired, a disc jockey, and a cook. A third member, Andrew’s wife, Rowena, and their four children provide him with the love and support that he needs to be an entrepreneur who is visually impaired. Tavita, originally from Western Samoa, became blind in 2007 due to Retinitis Pigmentosa. He was a construction worker. Tavita has learned to become independent with the support of his wife, Jennifer, and his mobility training from Blind Inc. in Minnesota. Tavita ventures from his home in Sinajana down to Bank of Guam in Agana, and then to Citibank in East Agana to pay his bills. Frank owned and operated his business as a heavy equipment operator before becoming blind in 2008. These are a few of the individuals who are blind or visually impaired who have networked and learned from each other. They share their experiences, information, and helpful tips such as how blind individuals put toothpaste on their toothbrush. Tavita and Frank invited Lee to meet with them at a neighborhood store to share and train Frank on the usage of the white cane, a talking calculator, digital recorder, and the raised marker to identify microwave oven and washing machine settings. The three blind individuals had an informal training and social gathering. They shared information, they laughed, and Tavita and Frank even got lost on their way back to Frank’s apartment. Fortunately, a helpful neighbor guided them in the right direction. After a year of planning, Lee, Andrew, Tavita, and Lynn put into motion their desire to officially start up New Vision Guam, a non-profit organization for individuals who are blind and visually impaired. This is proof positive that the BLIND are definitely leading not only the BLIND, but the island into a new era. Photo with caption: Lynn Tydingco (right) leads Tavita Faasuamalie (left) into a Self-Advocacy workshop held at GSAT. Page 4 Opening Doors: Maybe I Won’t See in Heaven By Cecilia Cruz This is a true story. I’ve always dreamt of going to Heaven. I imagine that in Heaven I’ll be able to see again. I have always looked forward to being able to see the faces of my parents, my family and friends—and most especially my husband, and nieces and nephews, whom I’ve come to know after I lost my sight. What’s wrong with this picture? It creates in me and imprints in me a sense and sensibility of being incomplete, being not okay the way I am, and of being damaged goods or defective. Being blind is not any of these things. It is being . . . well, blind. As a Catholic Christian, I am taught that from before all time, my being and being born was known by God. So it was. I was born with the genetic predisposition to have Retinitis Pigmentosa, a condition that translates to vision loss over time. Why me and not my brother or sister? Who I am; how I am; and that I am are gifts from God. This family interaction may help you understand this concept. Several weeks ago, I was having lunch with my friends Laura and Mark, and their sons, Luke, 6, and Matthew, 16. Luke is a very cute kid. He says cute stuff. So, I said to Luke, “We both have to go to heaven, Luke. Do you know why?” “Why?” was the reply. “In Heaven, I’ll be able to see. So, I can see just how cute you are.” “Aww,” was Laura’s response. From my left I heard Matthew say, “Auntie Lee, maybe you won’t see in Heaven after all.” “Matthew!” was Laura’s response. “I mean,” Matthew continued, “You are perfect the way you are. God made you in His image. Maybe you are exactly the way you will be in heaven. ”That revelation changed my life, literally. I always said that being blind was okay. It was a cross I could carry. Matthew helped me see, really see, what it is to be blind. Being blind is to be me, as God had intended me to be from before all time. From the mouth of babes. Good Outcomes By Leslie Gatan “Don’t be afraid to pick up the phone and ask questions.” For Maria Leon Guerrero, that was the first step she took in advocating for her son Coby’s education. Coby started receiving special education services after being diagnosed with Angelman’s syndrome. When Coby’s parents were having difficulties with their son’s Individualized Education Plan (IEP) they wanted to know what rights they had and what services were out there to help them. It was then that they were referred to Guam Legal Services Corporation – Disability Law Center (GSLC-DLC). “From the time we entered Guam Legal Services, it has been a pleasant experience. During the intake process, Advocate Leslie Gatan listened attentively, and was compassionate with our concerns. She explained in detail the process and what was to be expected. Leslie and Attorney, Matthew Wolff, always came to the IEP meetings well organized with a plan and prioritized our greatest concerns and took action immediately. Limited resources from the school system did not stop them from insisting my child receives services he’s qualified for.” For Coby’s parents, GLSC-DLC has taught them the importance of advocating for their child. “They have the services to help assist our children with special needs, and will assist you from beginning to end and explain the process in terms you can understand. My son’s IEPs are no longer stressful and dreadful and I am now able to send my son to school and go to work confident he’ll be safe and well cared for. Photo with caption: Coby Leon Guerrero relaxes at the beach Page 5 Assistive Technology Corner By Carla Torres Etch A Sketch: A Classic Now Adapted! Kids with limited muscle movement can get creative with this Etch A Sketch! This is the Classic Etch A Sketch drawing toy that many remember from childhood. It has been motorized and adapted with switch access. The small dials that have to be manipulated with fine motor skills have been replaced with four large switches that require such minimal exertion to activate. The four built-in switches allow one to go in horizontal or vertical directions and have large arrows on them that cue users. Just watch the magic screen where your lines begin to form exciting drawings. When finished, pull it off the base using the large easy-to-grasp handles and shake. The next masterpiece awaits! The base also has four external jacks for capability switches should a child require different access. This device can be purchased at www.enablingdevices.com for $191.95. Livescribe Pulse Smartpen: Never Miss a Word! Taking notes while listening to the teacher isn’t an easy task for some people, especially those with learning disabilities. The Livescribe Pulse Smartpen simplifies the process and ensures that one never misses a word they hear, write, or speak. With its built-in computer, this pen captures handwriting and simultaneously records audio and synchronizes it to the writing. Magically, users can simply tap on their notes and hear back what was recorded from the exact moment they were writing. Way cool! The Smartpen also offers some fun features. You can draw a nine-key piano and play it by tapping the keys with the pen. You can draw the letter i next to it for instrument and by tapping it, change the sound of your piano into various instruments. No kidding! In translator mode, you can write hello, tap on it, and hear Hola or Ni Hao. Seriously! This magical, spectacular, ever so smart Smartpen can be purchased through Livescribe.com and select retail stores for $149.99. For a live demonstration of the cool devices featured here, contact the Guam System for Assistive Technology at 735-2490. Page 6 Focus on Jobs Words Hurt By Kristina Perez Making a strong commitment to address the lack of employment opportunities for people with disabilities, the Guam Developmental Disabilities Council coordinated and collaborated with the Guahan Department of Labor to host the first ever “Guahan Special Challenges Job Fair” held on April 26 at the Agana Shopping Center. The Job Fair focused on providing individuals with disabilities and special challenges the opportunity to search for employment. A second Job Fair is scheduled for August 23, and the Council will share leadership and coordinate responsibilities of this planned event. Join in, opportunity knocks twice! Using the word “retard” is not cool, funny, or hip – it’s just thoughtless. No matter how the word is used, it is hurtful to people with disabilities. Think about your words. Don’t use hurtful words. See an individual’s ability and not their disability. Guam Developmental Disabilities Council General Membership Meeting, Wednesday, May 12, 201011:00 am to 2:00 pm, Holiday Resort Guam, Tumon, Guam Marie Libria, Guam Developmental Disabilities Council, Program Coordinator IV (seated), assists individuals with in-formation at the Guahan Special Challenges Job Fair on April 26 at the Agana Shopping Center. Photos with caption: Governor Felix P. Camacho proclaims April 26 for Guahan Special Challenges Job Fair. The focus was to provide individuals with disabilities and special challenges the opportunity to search for employment. Marie Libria, Guam Developmental Disabilities Council, Program Coordinator IV (seated), assists individuals with in-formation at the Guahan Special Challenges Job Fair on April 26 at the Agana Shopping Center. Text in colored box: Guam Developmental Disabilities Council General Membership Meeting Wednesday, May 12, 201011:00 am to 2:00 pm, Holiday Resort Guam Tumon, Guam Words Hurt Using the word “retard” is not cool, funny, or hip – it’s just thoughtless. No matter how the word is used, it is hurtful to people with disabilities. Think about your words. Don’t use hurtful words. See an individual’s ability and not their disability. Page 7 Transit Talk: Bus Route Changes By Ginger Porter Hooray! Bus riders from Agat to Dededo will soon be accessing more stops on our transit system. The Guam Regional Transit Authority is making some convenient changes to both the fixed route and demand response service. Blue Line 2 will now add a stop at the backside of the GCIC Building in Hagatna, the location of Department of Labor and GHURA offices. Nimitz Hill Estates housing area is being removed from Red Line 2, but will be added to the fixed route Blue Line 2 service area. Stops will occur on both northbound and southbound travel, stopping in the area adjacent to the Nimitz Towers. This will provide regular, non-call service for residents who don’t drive and for domestic workers in the area. Red 2 service will now end at the Top of the Mar. After arriving in Agat, Blue 2 will circulate as a demand response (same day call) service within the Pagachao Subdivision of Agat and parts of Santa Rita before returning to Agat and heading north. The northbound stop of Port Authority Beach is being moved to the first entrance gate of the Veteran’s Cemetery. Southern residents will also see changes in Green Line 1 and 2, both of which will end at the Inarajan pool area for transfer access to the Southern Public Health Clinic. Yes, some travelers will need to transfer, but the efficiency of the southern service will improve. Red Line 2 and Gray Line 3 provide demand response service to central Guam. These lines will now travel to and meet at the Main Postal Facility in Barrigada, giving you another north-south connection. Riders of Blue Line 1 will soon be able to travel as far as Dededo GTA, right across from the Flea Market. Travel will then proceed south along Harmon Loop Road, stopping at Kayen Caskado Drive, the 1st traffic light, and the Social Security Office. Returning on to Route #16, two new stops will be added. All changes remove dead time at waiting points in Agat and the Dededo Public Health Clinic, all of which remain on route. Look for the public announcement and final time schedules for these new stops to be released soon. By June, you will have more options for transit travel. Acknowledgements: I Linå'lå-ta is a quarterly newsletter published and funded through a Tri-agency collaborative partnership between the Guam Developmental Disabilities Council (Guam DDC), Guam Legal Services Disability Law Center (GLS-DLC), and the University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (Guam CEDDERS). Comments may be sent to: Guam CEDDERS Office of Academic & Student Affairs University of Guam UOG Station Mangilao, Guam 96923 Phone: 735-2480/1 Fax: 734-5709 TTY: 734-6531 Email: terrie.fejarang@guamcedders.org Guam DDC Executive Director: Manuel Cruz GLS-DLC Director: Harold Parker, Esquire Guam CEDDERS Director: Heidi San Nicolas, Ph.D. Editor: Terrie Fejarang Layout & Design: Sean Lizama This issue of I Linå'lå-ta was made possible by contributions from the following individuals: Carol Cabiles, Cecilia Cruz, Terrie Fejarang, Leslie Gatan, Marie Libria, Ginger Porter, Carla Torres, Erlinda Tydingco. Alternative formats (e.g. Braille, large print, or audio tapes) of I Linå'lå-ta will be made available upon request. Please contact Margaret Johnson at 735-2477 (v), 734-6531 (TTY), 734-5709 (fax) or email: margie.johnson@guamcedders.org for more information. The University of Guam is an equal opportunity employer and provider. Page 8 Advertisements: Ad#1: If you are an individual who is entitled to Social Security Disability Insurance (SSDI) based on disability or blindness and you are interested in working or returning to work The Protection and Advocacy for Beneficiaries of Social Security (PABSS) Program with Guam Legal Services Corporation-Disability Law Center may be able to provide you with information, advocacy or other services related to securing or regaining gainful employment. For more information, please contact GUAM LEGAL SERVICES CORPORATION DISABILITY LAW CENTER (GLSC-DLC) at 477-9811/2 or visit our website at www.lawhelp.org Ad#2: Guam Developmental Disabilities Council Making a Difference Improving the “Quality of Life” of Individuals with Developmental Disabilities and their families by: Advocacy Capacity Building Systems Change“ Meeting the need for timely information”735-9127 or visit our website at www.gddc.guam.gov Ad#3: Guam CEDDERS WANTS YOU! Guam CEDDERS is looking for individuals with disabilities who are interested in taking a leadership role in various trainings. Contact Terrie Fejarang at House 21 Dean’s Circle, University of Guam or call 735-2477 for more information. Ad#4: NEW VISION GUAM New Vision Guam is a support group and networking system for persons who are blind or low vision. The goal of New Vision Guam is to provide practical information that will improve day-to-day living, and open doors to personal enrichment and employment opportunities. For more information, please call 788-3534, or email newvisionguam@yahoo.com. Ad#5: Got a story or event related to Developmental Disabilities you would like to share? Contact Guam CEDDERS at 735-2477