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Opening up Lifeworlds and Empowering Persons with Disabilities in the Philippines

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Opening up Lifeworlds and Empowering Persons with Disabilities in the Philippines CYBERSPACE AS EQUALIZER: OPENING UP LIFEWORLDS AND EMPOWERING PERSONS WITH DISABILITIES IN THE PHILIPPINES A DISSERTATION SUBMITTED TO THE GRADUATE DIVISION OF THE UNIVERSITY OF HAWAI’I IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN SOCIOLOGY MAY 2012 By Cecilia D. Noble Dissertation Committee Albert Robillard William Wood Seio Nakajima Steven Brown Amefil Agbayani ACKNOWLEDGMENTS This research project is a journey to a world of infinite possibilities that I have been privileged to know. As always with matters of such complexity, any discussion inevitably raises more questions than it answers. Thus, I am fully convinced that I will be amazed with this disability-possibility phenomenon for the rest of my life. I want to thank the following individuals and groups that have journeyed with me to the finish line: To the Philippine disability sector represented by my sample: Adaptive Technology, Rehabilitation and Integration for the Visually Impaired, the Resource for the Blind, Manila Christian Computer Institute for the Deaf, International Deaf Association of the Philippines, Bohol Deaf Academy: Premier High School for the Deaf, Tahanang Walang Hagdanan, Nova Foundation, Autism Society of the Philippines and the National Council on Disability Affairs. To Deanna Lorenzana- Gregorio for inspiring me to take up the cause o disability and pioneer our dream of a Center of disability and diversity studies in the Philippines. To my awe-inspiring adviser, Dr Britt Robillard, and his wonderful wife, Divina, for their unwaivering support. To my distinguished panel members, Dr Bill Wood, Dr Seio Nakajima, Dr Steve Brown and Dr Amy Agbayani - for the able guidance that saw me through the finish line. To my supervisors in the various jobs that supported my schooling, Norma Jean Stodden, Sun-Ki Chai, Clement Bautista, Paul Rausch and James Weir - for the opportunity to serve in UH and believing in my multi-tasking abilities. To my church family and friends – for their relentless prayers and abiding friendships. To my parents (Hermie and Juliet), my siblings (Coy, Len, Jon, Chay and Jeff), and my aunts (Carmen and Elsa) - for the family that we are through thick and thin. To my husband Eric and my son, Eric Joseph - for all the love that has been my source of stability, sanity and strength. To God Almighty, the source of all wisdom and success - for his wisdom, faithfulness and amazing love that powers my life and dreams. To all of you, I am forever grateful. Ad Majorem Dei Gloriam, Cecilia Noble, PhD ii ABSTRACT PURPOSE This paper seeks to understand and explain how cyberspace can be an equalizer and empower persons with disabilities (PWD). FINDINGS Using cyberspace, each of the PWD groups studied has found an alternative and additional stage for the “presentation of the self in everyday life’ that overcomes stigma and manages impressions. Cases presented provide empirical evidence of PWD non-profit groups using social networking tools such as websites, blogs, Facebook and YouTube to manage social and professional relationships. Thus proving that cyberspace can facilitate agency through a virtual social identity that complements actual social identity. To empower persons with disabilities and open up new lifeworlds, this paper submits three levels of engagement in the offline world that complements the online interaction previously outlined. First is through participation that proves Erving Goffman’s theory of ego alignment. The PWD must end isolation and be part of multi-agent action that may be in the form of education, training and any other form of human enterprise. Second is performance in both backstage (preparations) and front stage (actual work) area of operations. The goal of back and front stage performance is role fulfillment. Third is production, which is the intended byproduct of performance that can lead to empowerment. Good performance can lead to actor-audience consensus that is geared toward acceptance of the PWD, the presentation of himself and the work that he can accomplish. This can lead to encounters and subsequent production and reproduction of social structure and relationships, e.g. employer-employee relationships, donor-benefactor relations and eventually disability pride. ORIGINALITY / VALUE This article argues cyberspace can serve as tool for impression management for the PWD groups. On the micro level, the case studies presented herein, serve to initiate the formal chronicling of the history of disability in the Philippines. It aims to contribute to oriental and developing world disability discourse that is predominantly western. On the macro level, it seeks to apply Goffman’s theory of dramaturgy and social interaction in explaining the social behavior of PWD in cyberspace and its 'net effect' on the real world. Keywords: disability, cyberspace, lifeworld, self, stigma and social interaction iii TABLE OF CONTENTS ABSTRACT LIST OF TABLES LIST OF FIGURES AND PHOTOS Chapter Title Page # I ISSUE, CONTEXT AND THEORY A. Introduction 1 B. Theoretical Perspectives: 6-22 1. Disability, Cyberspace and Lifeworlds 2. Erving Goffman’s Dramaturgy, Stigma and Social 23-26 Interaction 3. Carling-Jenkins ‘Postmodernity as a Way-Forward’ and 27-32 Hocks and Balsamo’s ‘Technology as Articulated Ensemble’ II RESEARCH DESIGN: DATA, METHODS AND APPROACH A. Research Questions 33 B. Hypothesis 34 C. Methods 34-37 D. Data Sample 38-40 E. Significance and Limitations of the Research Study 41 III. WHAT IS SO DISABLING ABOUT DISABILITY IN THE PHILIPPINES AND WHAT ENABLES THE DISABILITY MOVEMENT? A. Who is disabled and what is their situation? 43-49 B. What causes disability? 50-51 C. The Disability Social Movement and its 52-59 recommendations IV. CYBERSPACE AS LOOKING GLASS, SO THE BLIND CAN SEE iv A. Adaptive Technology, Rehabilitation and Integration for 60-72 the Visually- Impaired: First Computer School for the Blind B. Resources for the Blind – Philippines (RBI): The 73-81 Department of Education’s Partner in Educating the Blind V. OPENING UP CLOSED CAPTIONED, SO THE DEAF CAN HEAR A. Manila Christian Computer Institute for the Deaf: 82-91 Pioneering Computer College for the Deaf B. International Deaf Association of the Philippines: Non- 92-96 profit Exemplar for Engaging Rural-based PWD in the 21st century C. Bohol Deaf Academy: Premier High School for the Deaf 97-105 VI. IN CYBERSPACE - NO MORE LAME EXCUSES A. Tahanang Walang Hagdanan: Sheltered Workshop and 106-115 Rehabilitation Partner B. Nova Foundation: Entrepreneur and International 116-126 Advocate of Cyber-enterprise C. Autism Society of the Philippines: Nationwide Support- 127-133 network for Children with Autism Spectrum Disorder VII NATIONAL COUNCIL ON DISABILITY AFFAIRS: 134-147 Navigating government’s way in the disability Highway VIII. DISCUSSION OF FINDINGS AND SUMMARY A. Findings: Comparisons and contrasts 148-160 B. Summary 161-167 IX. CONCLUSION AND RECOMMENDATIONS A. Conclusion: Cyberspace as equalizer and opener of 168-170 lifeworlds B. Recommendations: Continuing the Saga without the 171-180 Stigma REFLEXIVE STATEMENT BIBLIOGRAPHY APPENDICES v LIST OF TABLES Table # Title and description of the table Page # 1 Disability theories and models (Depoy and Gilson 2004) 8 2 Framework for theme analysis: Disability as Modern and 29 Post-modern concept (Carling-Jenkins 2009) 3 Technology as Articulated Ensemble Elements 32 4 Findings: Making the Case for the Blind 61 5 Findings: Making the Case for the Deaf 81 6. Findings: Making the Case for the Orthopedically-impaired 105 7. Summary Matrix of Content Analysis using Carling-Jenkins 150 Way-Forward Postmodernity Framework 8. Summary Matrix of Content Analysis using Goffman’s 152 Dramaturgy 9. Application of Lifeworld and Googin and Newell’s 154 Accomplishment Space on sampled case studies vi LIST OF FIGURES AND PHOTOS Figure # Title and description of the figure Page # 1 Percent distribution of Persons with disabilities by Type of 49 Disability (National Statistics Office, Philippines 2000) 2 Pinoy (Filipino) Disability Model 59 3 ATRIEV Homepage 68 4 ATRIEV Youtube Channel 73 5 Resources for the Blind (RBI) Homepage 79 6 RBI Computer Eyes Program 82 7 MCCID Homepage 91 8 IDEA Homepage 102 9 BDEA Homepage 105 10 BDA Students with the Consuelo Foundation Banner 110 11 Nova Foundation Homepage 124 12 Autism Society of the Philippines Homepage 136 13 National Council on Disability Affairs Homepage 141 14 Impression Management Framework (adapted from 177 Goffman) vii CHAPTER I INTRODUCTION: ISSUE, CONTEXT AND THEORY Accomplishment space or digital divide - which scenario typically depicts the quest of persons with disabilities in cyberspace? A. Introduction: The Issue, Context and Purpose of the Study Since the dawn of civilization, there has always been a clouded view of the “disabled” and for much of human history, knowledge about disability has been in the hands of the non-disabled people. While the global community has made several advances toward the recognition and protection of persons with disability during the 21st Century, including United Nations Convention on the Rights of Persons with Disabilities, perceived prejudices remain. In a 2009 perception survey conducted by the UK Government's Office for Disability Issues, researchers coined the phrase "benevolent prejudice" to describe the veiled responses of British participants. Benevolent prejudice is discomfort about negative comments made toward people with disabilities (PWD); mixed with views that disabled people as less capable; and discomfort with PWDs working in positions of higher authority (Staniland 2009). These perceptions serve as possible barriers to PWD integration and participation in society and potentially contribute to the age-old trend of poverty. The Republic of the Philippines (RP) is a representative sample of this residual problem. While the 2000 national census revealed a PWD population of less than 1.2%, the Asia Development Bank believes these numbers under represent the magnitude of this population segment. A simple fact is that Filipino families do not readily register their disabled family members due to the “stigma” and thus data collection is problematic (ADB 2002; NCSO 2005).
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