Disaster, Disability, & Difference A Study of the Challenges Faced by Persons with Disabilities in Post-Earthquake Nepal Austin Lord | Bandita Sijapati � Jeevan Baniya | Obindra Chand | Tracy Ghale � May 2016 Prepared by Social Science Baha � for the United Nations Development Programme in Nepal � with the support of the National Federation of Disabled-Nepal 1 Contents 1. INTRODUCTION TO THE STUDY ........................................................................ 4 ­ 1.1 DISABILITY &D ISASTER ............................................................................................ 5 ­ 1.2 THE INTERSECTION OF DISABILITY &S OCIAL EXCLUSION IN NEPAL ........................... 7 ­ 1.3 RESEARCH METHODOLOGY ........................................................................................ 9 ­ 2. THEMATIC SUMMARY OF FINDINGS ............................................................. 11 ­ 2.1 GENDER AND DISABILITY ......................................................................................... 14 ­ 2.2 SOCIAL EXCLUSION BASED ON ETHNICITY &C ASTE ................................................. 16 ­ 2.3 THE SOCIAL POLITICS OF RELIEF DISTRIBUTION ....................................................... 19 ­ 2.4 CONTINUED EXCLUSION AND INCREASED VULNERABILITY ....................................... 22 ­ 2.5 PUBLIC HEALTH &H EALTHCARE ............................................................................. 24 ­ 2.6 UNEQUAL EDUCATIONAL OPPORTUNITIES ................................................................ 25 ­ 2.7 LIVELIHOOD STRUGGLES &C ONSTRAINTS ECONOMIC RECOVERY ............................ 28 ­ 2.8 UNDER-REPRESENTATION OF DISABLED PERSONS ORGANIZATIONS .......................... 32 ­ 2.9 CHRONIC LACK OF DATA ON DISABILITY .................................................................. 35 ­ 2.10 LIMITED DATA ON NEWLY EARTHQUAKE-DISABLED PERSONS ....................................... 36 2.11 ISSUES WITH DISABILITY IDENTITY CARDS ....................................................................... 39 2.12 INTELLECTUAL DISABILITIES &C AREGIVERS ................................................................... 41 2.13 UNDERREPORTING OF MENTAL DISABILITIES ................................................................... 42 2.14 THE POST-EARTHQUAKE MENTAL HEALTH GAP .............................................................. 44 3. STRATEGIC POLICY RECOMMENDATIONS ....................................................... 47 ­ 3.1 RECONSTRUCTION &R ECOVERY:I NCORPORATING THE PRINCIPLES OF UNIVERSAL AND ACCESSIBLE DESIGN .................................................................................................................... 47 3.2 SUPPORTING THE PENDING DISABILITY RIGHTS BILL ......................................................... 48 3.3 INVESTMENT IN CAPACITY BUILDING WITHIN NEPAL’S DISABILITY SECTOR ...................... 48 3.4 IMPROVED INFORMATION ARCHITECTURE:N EW INITIATIVES TO IMPROVE DATA ............... 49 3.5 INFORMATION ACCESSIBILITY &S HARING ........................................................................ 50 3.6 COORDINATION:F ORMING STRATEGIC WORKING GROUPS ON DISABILITY IN NEPAL ......... 51 3.7 ‘DISABILITY IS NOT INCAPABILITY’: TARGETED LIVELIHOOD PROGRAMS FOR PWDS ........ 53 3.8 SUPPORTING CAREGIVERS .................................................................................................. 54 3.9 DISCUSSING PREVENTION ................................................................................................... 54 3.10 KNOWLEDGE PRODUCTION:S UPPORTING FUTURE RESEARCH .......................................... 55 4. DISABILITY AND DISASTER RISK REDUCTION: OPERATIONALIZING THE � SENDAI FRAMEWORK ................................................................................................... 57 ­ 4.1 MEANINGFUL INCLUSION THROUGH PARTICIPATION &C ONSULTATION ............................. 59 4.2 TRAININGS TO PROMOTE AWARENESS ................................................................................ 61 4.3 INFORMATION SHARING &E ARLY WARNING SYSTEMS ...................................................... 61 4.4 BUILDING DISASTER PREPAREDNESS CAPACITY WITH DPO NETWORKS ............................ 62 4.5 ATTENTION TO DISABILITY WITHIN DISASTER RESPONSE ................................................... 64 4.6 SOCIAL INCLUSION &B ENEFITS FOR ALL ........................................................................... 66 5. LOOKING FORWARD: DISABILITY WITHIN THE SUSTAINABLE � DEVELOPMENT GOALS ................................................................................................. 68 ­ BIBLIOGRAPHY .............................................................................................................. 70 ­ ANNEX I | THE EVOLUTION OF DISABILITY POLICY IN NEPAL ............................ 76 ­ ANNEX II | ALTERNATIVE & ACCESIBLE TABLES & FIGURES .............................. 81 ­ ANNEX III | ETHNOGRAPHIC CASE STUDIES: STORIES FROM PWDS IN NEPAL 86 ­ 2 List of Figures & Tables � Figure 1: Level of Damages Incurred in Comparison to Others in the Community .............. 11 Figure 2: Impact on Economic Activities/Sources of Livelihood ......................................... 12 Figure 3: Post-Earthquake Challenges Identified by Persons with Disabilities….. ............... 13 Figure 4: Perceptions of Being Excluded from Public Life .................................................. 17 Figure 5: Access of Different Categories of PwDs to Public Facilities................................. 17 Figure 6. Access of Different Categories of PwDs to Government Services:........................ 18 Figure 7: Access to Information in the Immediate Aftermath of the Earthquake .................. 20 Figure 8: Perceptions of the Relative Difficulty of Receiving Relief.................................... 21 Figure 9: Reasons Identified for Feeling Excluded in the Post-Earthquake Period ............... 23 Figure 10: Differences in Access to Post-Earthquake Support/Assistance............................ 23 Figure 11: School Attendance by Demographic Group ........................................................ 26 Figure 12: Changes in Employment Status/Livelihood Strategies After the Earthquake…... 28 Figure 13: Changes in Migration Trends Prior to and After the Earthquake ......................... 30 Figure 14: Percentage of Households with New Loans Following the Earthquake ............... 31 Figure 15: Sources of Loans/Credit After the Earthquake.................................................... 31 Figure 16: Type of Disability Cards among PwDs............................................................... 39 Figure 17: Reported Prevalence of Mental Health Problems after the Earthquake................ 45 List of Acronyms CRPD UN Convention on the Rights of Persons with Disabilities DDRC District Disaster Relief Committee DPOs disabled persons organizations DRR disaster risk reduction FGD focus group discussion GESI Gender Equality and Social Inclusion IDP internally displaced peoples IPwDs indigenous persons with disabilities MoWCSW Ministry of Women Children and Social Welfare NDWA Nepal Disabled Women Association NFDN National Federation of Disabled-Nepal NRA National Reconstruction Authority PwDs persons with disabilities SDGs Sustainable Development Goals SFDRR Sendai Framework for Disaster Risk Reduction Framework UNISDR UN Office for Disaster Risk Reduction VDC Village Development Committee WASH water, sanitation and hygiene WDO Woman Development Officer WwDs woman with disabilities 3 Acknowledgements ­ The authors of this report would like to recognize and thank the United Nations Development Programme in Nepal, in particular Country Director Renaud Meyer and Deputy Country Director Sophie Kemkhadze, for providing us with the opportunity to conduct this study and for supporting a series of roundtable consultations and dialogue sessions focused on Disability in Nepal that greatly informed our research process. We would also like to thank the following people for their generous contributions to this study. Our colleagues from the National Federation of Disabled-Nepal (NFDN) who provided significant guidance throughout all phases of research design, fieldwork, and data analysis: Vice President Tika Dahal, Admin & Program Manager Manish Prasai and Pro ject Coordinator Sagar Prasai. Our colleagues from Social Science Baha, including field research team members Anish Bhandari, Amrita Gurung, Manju Gurung, Tashi Tsering Ghale, Ratna Kambang, Soni Khanal, Himalaya Kharel, Swarna Kumar Jha, and Saveen Shrestha; data analytics team members Ashim Bhattarai, Dinesh Pathak, Prakriti Thami, Dogendra Tumsa and Bipin Upadhyaya; logistics officer Rita Bhujel; and Director Deepak Thapa for his support throughout the study. Representatives from local Disable Persons Organizations (DPOs) who served as field research assistants during the course of the study, including Yagya Dulal in Kavre; Krishna Khatri and Resham Lal Shrestha in Sindhupalchowk; Rupa Thapa in Nuwakot; and Amar Tamu in Gorkha. Representatives from NGOs, DPOs, and other institutions with whom we consulted during the research process, including the Nepal Disabled Women’s Association (NDWA); UNICEF Nepal; Handicap International–Nepal; the Karuna Foundation; CBM–Nepal; the Nepal Indigenous Disabled Association (NIDA); Koshish Nepal; the Nepal Association of the Blind; the Association of the Deaf and Hard Hearing Nepal; the Federation of Parents of Children with Intellectual Disability;