Full report Hear my voice: old age and disability are not a curse A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania September 2016 International Authors Contents Dr. Mwifadhi Mrisho, Ifakara Health Institute, Tanzania Bakar Fakih, Ifakara Health Institute, Tanzania Content Page Content Page Abbreviations 4 4. Poverty relating to income 44 and dependence Co-Authors Acknowledgements 5 5. Attitudes towards witchcraft Dr. Margo Greenwood, Sightsavers, UK Summary 47 6 and albinism Dr. Marion Steff, Sightsavers, UK The main report 20 6. Relationship difficulties and 50 Background 20 marriage breakdowns Contributors Justification for conducting 7. Sexual violence and gender issues 52 21 Husein Adam Kibindu4 Abdillah Omari5 Ladislaus Mapinduzi6 this study 8. Poor treatment from family 53 4 5 6 Overall objective 22 Tatu Kondo Iddi Bakari Abdulrahman Omar Sherani Participants’ experience of 54 Robert Bundala4 Hidaya Alawi5 Anthony Mwambe6 Methodology 22 aging and disability Selection criteria for community peer Discussion 58 Sudi Kambogoro4 Edith Dosha5 Brigita Mpunga6 25 researchers and NGO staff Regina Mbaji4 Baraka Lukas5 Danny Burns3 Conclusions and recommendations 60 Data processing and management 26 Elizabeth Nkerwa4 John Mlabu5 Abdalla Mbena1 Weaknesses of the study 63 Ethical review 27 4 5 1 Strength of the study 63 Aida Sendaro Risala Msemo Adella Paulo The steering committee 28 and the advisory group Global recommendations Blandina Mbaji4 Musa Namulya6 Dr. Stevens Bechange2 64 Definition of terms 29 References Pangarasi Msongore5 Mwanaharusi Kanga6 65 Research design and planning Annexes Emanuel Simon5 Frida Matuta6 31 66 workshop Annexe 1: Interview guides Mid workshops: Kibaha, 66 32 for NGO peer researchers Nachingwea and Dar es Salaam Annexe 2: Interview guides for Stories 33 peer researchers (older people 67 Research analysis workshop 34 and persons with disabilities) 1. Ifakara Health Institute, Tanzania Findings 36 Annexe 3: Information sheet 68 2. Sightsavers, UK 1. Access to education and Annexe 4: Consent form 70 3. Institute of Development Studies, UK 37 quality learning 4. Community Peer Researchers (Kibaha District), Tanzania Annexe 5: Report 72 5. Peer Researchers NGOs, Tanzania 2. Access to health services 39 validation workshop 6. Community Peer Researchers (Nachingwea District), Tanzania 3. Issues fed back from NGOs 42 Who's behind it? 73 Cover Image: © ADD International 2 Hear Hear my my voice: voice: old old age age and and disability disability are is notnot aa cursecurse www.sightsavers.org/voices 3 Abbreviations Acknowledgements The authors and contributors of this report would like to thank Abreviation Description the many individuals and institutions that have contributed to the ASBAHT Association for Spina Bifida and Hydrocephalus in Tanzania study’s success. Firstly, the role of Sightsavers in funding this project CHAWATA Chama cha Walemavu Tanzania/Tanzania Association of the Disabled is highly appreciated. We thank the District Executive Directors (DEDs) from the study sites of Nachingwea, Kibaha, Kinondoni, Ilala CBPR Community-Based Participatory Research and Temeke for allowing this work to be conducted in their areas. CCBRT Comprehensive Community Based Rehabilitation in Tanzania We would also like to thank the District Social Welfare Officers CRPD Convention on the Rights of Persons with Disabilities (DSWs) for their willingness and cooperation in helping and guiding DOLASED Disabled Organisation for Legal Affairs and Social Economic Development our research teams. DPOs Disabled People’s Organisations We would like to thank each division, ward, We extend enormous thanks to the village and hamlet leader in the study areas, Sightsavers staff in Dar es Salaam for their DSW District Social Welfare Officer and we highly appreciate the cooperation support of, and keen interest in, the study of everyone who volunteered to be our – they were fundamental in making it a IDS Institute of Development Studies participants in the villages we visited. We success. Similarly, we would like to thank are particularly grateful to the persons with ADD International, HelpAge International, IHI Ifakara Health Institute disabilities and older men and women who CCBRT, SHIVYAWATA, MoHSW, MUHAS KISUVITA Kikundi cha Sanaa na Utamaduni cha Viziwi Tanzania spent time sharing their stories with us. This and REPOA for being part of the advisory (Cultural and Art Group for people with hearing impairment) work would not have been possible without group in this project. the immense support and collaboration of MoHSW Ministry of Health and Social Welfare Disabled People’s Organisations (DPOs) Finally, we would like to thank all the from the study areas and older people’s volunteers who worked tirelessly towards MUHAS Muhimbili University of Health and Allied Sciences organisations in Dar es Salaam, to whom realising the study’s goals and objectives – they worked under difficult circumstances, NGO Non-Governmental Organisations we extend our sincere appreciation. and their courage and readiness to NIMR National Institute for Medical Research consistently provide quality data cannot be compensated with any type of reward REPOA Policy Research for Development or payment. UNCRPD United Nations Convention on the Rights of Persons with Disabilities PSORATA Psoriasis Association of Tanzania SHIVYAWATA Tanzania Federation of Disabled People’s Organisations TAS Tanzania Albinism Society TASODEB Tanzania Society for the Deafblind TLB Tanzania League for the Blind TUSPO Tanzania Users and Survivors of Psychiatry Organisation WHO World Health Organisation 4 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 5 © ADD International © ADD International Summary Rationale and background Methodology The 2030 Agenda for Sustainable Sightsavers, ADD International, and HelpAge The research was based on community- Twenty-nine peer researchers (nine persons Development, which was adopted in International partnered with Ifakara Health based participatory research (CBPR), which with disabilities, 10 older people and 10 September 2015 by UN Member States, Institute to look into this reality in Tanzania. involves collaborating respectfully with the Tanzanian Non-Governmental Organisation pledges to “leave no one behind” in its While persons with disabilities and older community. CBPR is about shared decision- (NGO) members working in these implementation. Governments have to review people make an invaluable contribution to making and ownership, with members of the communities) were involved in the study. A their policies to actively engage and commit society, they can be particularly vulnerable community involved in planning, gathering total of 106 stories were collected: 36 were to the universality, equality, dignity, justice when it comes to health care, livelihood evidence, analysing the results and sharing collected in the rural settings of Nachingwea, and solidarity expressed in this framework. and access to services. Our organisations what is found. All partners contributed, and 40 in Kibaha Urban Municipal Council and In order to achieve the 2030 Agenda and conducted a research study with the following respected the unique strengths that each 30 from NGO staff based in Dar es Salaam. the Sustainable Development Goals (SDGs), objective in mind: to provide evidence on the person brought. As well as asking specific These staff were from Tanzanian NGOs persons with disabilities and older people must specific nature and experiences of persons research questions, the design of this kind working with older people and persons with be included. Representing 15 per cent and 11 with disabilities and older people from their of research seeks to break down social disabilities (including physical, visual, hearing, per cent of the world population respectively, own perspectives in Tanzania, from a social, injustice and helps everyone to re-think intellectual and psycho-social disabilities, they are amongst the most marginalised, political, economic and cultural point of power structures and issues. The overall as well as albinism). Forty-four older people often living in poverty and exclusion. view. Our aim was to strengthen efforts to aim of CBPR is to increase knowledge and aged 60 and above as well as 32 persons provide services for and improve the lives of understanding of the situation being studied with disabilities were interviewed. All types of people living in the rural and urban settings together, to construct meaning together and disabilities were represented in the sample. In of Nachingwea and Kibaha Urban Municipal to integrate this with interventions and policy terms of gender balance, 57 interviews were Council respectively. These districts were change to improve the quality of life of the conducted with men and 49 with women. selected because of the presence of active community (Greenwood et al, 2016). projects by our organisations involving both persons with disabilities and older people. 6 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 7 Peer researchers were asked to identify the © HelpAge International Voices of the marginalised – Tanzania main issues faced by persons with disabilities Tanzania and older people in all 106 stories, why they thought the issues occurred and how they were connected. This activity drew on their cultural and contextual experience. Analysis Research question: was triangulated