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 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 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 (), 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 by researchers coding 36 How do participants experience interviews that examined all the experiences ageing and/or disability? without assigning importance to them, asking the overall research question: how did participants experience ageing and disability? The findings from this analysis were shared with the community members in person for their consideration and in order to bring the two sets of findings together. E n Interpersonally m Findings io p t • Suffering domestic abuse o Participants’ experience Zooming out from the interpersonal to a a • The power of community attitudes w n of ageing and/or disability: societal level, NGOs working in the field of i • Traditional methods encouraged e disability and with older people shared a m • Fear of extreme persecution/attacks r The stories were of participants experiencing i for people with albinism m pressing need for more support of their work r ageing, disability, or a combination of both, at a governmental level, financially and by c e s n on an individual, interpersonal (interaction acknowledging the impact and the issues i Huge impact with friends, family and community) and t faced. Persons with disabilities experienced D Being made on primary/key societal level. On an individual level, many political barriers, discrimination within invisible relationships experienced emotional difficulties, such as education, a lack of work opportunities and Poverty negative self-perception, stress, various poor access due to a lack of appropriate exacerbated effects on their mental health and, at times, a transport. Both persons with disabilities In society by situation sense of hopelessness. and older people had difficulty accessing • Partner organisations Individually needing more support appropriate health care. • Having multiple illnesses On an interpersonal level, there were various • Barriers accessing human Self- • Emotional difficulties experiences from both groups. Stories rights and livelihood empowerment • High exposure to death of both domestic and sexual abuse were These findings are shown • Good access to human rights and livelihood • Through memories and collected, as well as concerns over the risks in the diagram below: opinions of ‘youth’ of such abuse. A main theme that emerged was that, for persons with disabilities and – to an extent – older people, there was a huge impact on primary and key relationships as a result of individual and community experiences. There were many examples of challenging family relationships and marriage breakdowns. A few stories revealed strong and positive marital experiences, despite the Stigma overall community experiences.

8 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 9 © HelpAge International

1. Access to education and Ways forward quality learning More broadly, the peer researchers While the government has invested much in discussed the following ways forward improving the education sector, participants on the issue of access to education had experienced a number of challenges, and quality learning: including poor infrastructure of the teaching and learning environment for persons with • More teachers should be trained to disabilities. One 18-year-old participant provide quality inclusive education (with a hearing impairment) said: “When I for children with disabilities. came back from the hospital, I couldn’t hear properly. I was bright but started to drop in • Curriculums in primary schools the class... I left school because I couldn’t should be flexible and adapt to hear what was being taught so I saw no the needs of diverse learners, importance in school.” so children with disabilities can benefit from quality education.

• Parents of children with disabilities “ Why do you come should be sensitised to the importance of taking their children to school to Peer researcher suggestions for policy: to school then if receive an education.

The peer researchers identified eight priority areas on which you cannot see?” • Older people should be listened to to focus policy and advocacy efforts, shown in the box below. as their life experience is invaluable. These were identified based on their opinions and experiences Discrimination against children with disabilities of the recurring issues raised in all 106 interviews. and limited teacher training have also been reported as obstacles in accessing education. One 25-year-old participant (with Eight priority areas for policy focus and advocacy efforts a visual impairment) explained: “When I was in primary school, I would tell the teacher 1 Access to education and quality learning that I could not see. I would ask: ‘Can you please read for me?’ But the teacher would 2 Access to health services say, ‘Why do you come to school then if you cannot see?’.” 3 Issues fed back from NGOs Older people in both districts wanted to share 4 Poverty relating to income and dependence their lifelong learning within their communities because they felt they had lots to contribute which could be of benefit to everyone. 5 Attitudes towards witchcraft and albinism

6 Relationship difficulties and marriage breakdowns

7 Sexual violence and gender issues

8 Poor treatment from family

10 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 11 2. Access to health services 3. Issues fed back from NGOs Ways forward Ways forward Persons with disabilities and older people in the Limited financial resources and dependency study cited limited accessibility of health care More broadly, the peer researchers on donors were among the challenges More broadly, the peer researchers services. The major issues reported include discussed the following ways forward on faced by NGOs supporting persons with discussed the following ways forward on shortages of medical equipment and supplies the issue of access to health services: disabilities and older people. For instance, the issues fed back from NGOs: at health facilities, poor communication skills • Social welfare officers should make one participant working for an NGO said: “We • NGOs should employ more among health care providers and costs frequent visits to their respective receive different people seeking assistance. professionals to help advise persons incurred when seeking care. villages to enquire about and Some people are OK with the advice we with disabilities and older people. provide which can change their lifestyle, but A 32 year-old participant (with a hearing understand the needs of persons with disabilities and older people. others are in need of equipment and other • Collaboration among NGOs was impairment) explained: “I usually go alone [to different services which we cannot afford.” suggested to better support persons the hospital] but I have been experiencing a • Health facility infrastructures should with disabilities and older people, lot of difficulties because I don’t know how to be made accessible to persons with recognising the intersections between express myself, because health care providers disabilities, including training health “ Others are in need age and disability. do not understand sign language.” One care providers on how to interact participant from an NGO said: “I remember with persons with disabilities and of equipment and • Participants recommended putting another sad story in which a pregnant woman older people. more pressure on the government to who was blind went to give birth at the health other different allocate enough budget for persons facility. She delivered twins but reported that • Measures need to be in place so with disabilities and older people. she was given one baby only.” that health facilities can make sure services which that health care staff who abuse or mistreat persons with disabilities we cannot afford” “ If I go to the hospital, and older people are reported and held accountable. I am not even cared Participants also mentioned limited funding for unless I have from the government to support local NGOs working with persons with disabilities and money to buy drugs.” older people, and said that NGOs don’t often collaborate. Participants suggested the need to improve the capacity-building of NGOs so they can support marginalised people on how An 82-year-old person said: “I have not been to improve their incomes. paid my pension yet since I retired. I have stopped following the issue because I have written a lot of letters. I am now having a difficult life situation. In general, older people are facing hardship; they are not respected, not cared for, and neglected. If I go to the hospital, I am not even cared for unless I have money to buy drugs. So where can I get the money?”

12 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 13 4. Poverty relating to income 5. Attitudes towards Ways forward Ways forward and dependence witchcraft and albinism More broadly, the peer researchers More broadly, the peer researchers Persons with disabilities and older people discussed the following ways forward Harassment and torture was commonly discussed the following ways forward on expressed that there were few sources on the issue of poverty relating to reported by persons with albinism. Persons the issue of attitudes towards witchcraft which they could rely on to generate income. income and dependence: with albinism have been killed and their limbs and albinism: There was also unreliable support from amputated as some people believe this can the government and community to these • Persons with disabilities and older bring about good fortune, especially during • A national public campaign must be marginalised groups. Those few who were people should be able to receive elections as a means of bringing good luck to organised to advocate for the rights formally employed stated they had received support and guidance from local and politicians. Organs of persons with albinism of persons with albinism. a very small pension which could not sustain national authorities so they can (for have reportedly been used in witchcraft their cost of living. instance) establish income-generating activities as a result of this unfounded belief. • The government should work with activities as well as be trained in traditional healers and seek the causes A 61-year-old participant explained: “I am entrepreneurship skills. A participant from an NGO explained: of the killings of persons with albinism. old, but when I look ahead of me, I can’t “Whenever there is an election, the killing of sleep at night. I see I will face difficulties in • Communities should be supportive people with albinism increases. This year, the • Individuals who persecute or my old age because I have no savings in the of persons with disabilities and killings were increasing but the community kill persons with albinism should bank and my pension is small. I have pain older people so they can actively raised their voices and it stopped for a while. be prosecuted. so I am supposed to get treatment at the get involved and share their skills, If this had not been the case, we could have • Communities must be made aware referral hospital, I am supposed to go back life experience and knowledge. experienced a greater number of deaths of of the medical conditions associated to Muhimbili National Hospital every three people with albinism.” with albinism. months, but I can’t afford it. My life ahead will be a difficult situation (...) That is why I can’t Another participant working for an NGO sleep at night. The hours pass by until the recalled the following: “A woman with morning. I am always thinking but I cannot “ I am old enough but albinism was living alone. Since there are get the answer.” beliefs associating albinism with good “ This year, the killings when I look ahead fortune in our community, she was raped Lack of employment was also cited as a by nine people who wanted to get rich. She were increasing but challenge for persons with disabilities, as this of me, I can’t sleep got infected with HIV/AIDS. Since she had participant with visual impairment recalled: “I ” no alternative, she went on begging and the community raised got my primary education at Soga and was at night got skin cancer. As she was suffering from then employed at Kibaha Education Centre skin cancer, she didn’t know what to do to their voices and it in 1979. I worked for approximately twenty survive. As I am talking to you, she continues years. I started to experience eye problems to beg while being infected with HIV and stopped for a while” in late 1996 and my employer paid all my having skin cancer.” hospital bills at Tumbi hospital, but I could not get cured. I was referred to Muhimbili National Hospital where I got operated on, but from there I lost my eyesight. I went back to my job but started experiencing problems associated with discrimination and then got made redundant in 1997.”

14 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 15 © ADD International

6. Relationship difficulties Ways forward and marriage breakdowns More broadly, the peer researchers Parents of children with disabilities were discussed the following ways forward identified as one of the main reasons on the issues of relationship difficulties for relationship difficulties and marriage and marriage breakdowns: breakdowns because they were taking over the role of choosing a fiancée/life partner • Participants proposed the for their children. Peer researchers said that establishment of income-generating women with disabilities have been frequently activities and the provision of humiliated by being forced to live with men entrepreneurship skills to families who were not their choice. Most women, of persons with disabilities and either because of social norms, their age older people in order to strengthen or their disability, were dependent on their household economies. husbands’ incomes to run their families. • Spouses who leave the family home should meet their duties under national “ I cannot force him to law to continue to provide support. • Persons with disabilities and parents support me if he has of children with disabilities should be decided not to” made aware that all matters related to marriage, family, parenthood and relationships should be decided freely, 7. Sexual violence and on an equal basis with others. Ways forward One 35-year-old woman (with a hearing gender issues • Village chairpersons should have a More broadly, the peer researchers impairment) said: “The man who played Participants reported that women with list of older people and persons with discussed the following ways forward an intermediary role in our marriage told disabilities were sexually exploited, threatened disabilities in their respective localities on the issue of sexual violence and the father of my child that according to or mistreated. It was further explained that in order to facilitate coordination and gender issues: his religion, he should provide support to peer influence has also contributed to the support the household if needed. the mother and child for a period of three women with disabilities being harassed in • Measures should be taken to raise months. However, my husband refused to their marriages. awareness of gender equality and provide me with support. He supports only discrimination in communities, his child. It is OK if he has decided to not Neglect and abandonment of women with including the need to report physical, support me. I cannot force him to support me disabilities have also been reported among verbal and sexual abuse to the police. if he has decided not to.” the families of persons with disabilities and older people. One participant from an NGO • Thanks to their participation in Older people felt neglected by their families talked about the sexual abuse of a woman this study, peer researchers felt and communities because they were poor with disabilities that had been arranged empowered to provide information and had no income. They believed that their by her parents in order to “fulfill her sexual about sexual education to their life experience should be used to guide their desire”: “We tried to discuss this issue respective communities. household and village. Looting of properties with the parents, but could not reach a belonging to persons with disabilities was consensus. The parents said that they had also a challenge contributing to family the right to select someone who could take difficulties, because persons with disabilities care of their daughter.” There were no reports were perceived as incapable of being by the older participants of sexual violence or responsible of their goods. gender issues.

16 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 17 8. Poor treatment from family Ways forward Conclusion Participants have recounted mistreatment by their own families. For instance, some parents More broadly, the peer researchers This study has informed efforts to provide services for, and improve discussed the following ways forward on see a child with disabilities as a burden and the lives of, persons with disabilities and older people in Tanzania. therefore will decide to abandon their child. the issue of poor treatment from family: One 80-year-old woman said: “This child’s • The Ministry of Health and Social It has also contributed to filling knowledge This study serves as a reminder that the mother came here and left her daughter with Welfare office should create awareness gaps due to a lack of research in this area and situation for persons with disabilities and me when she was very young. Her father is among village leaders in order to created evidence that can be drawn upon by older people is complex and interconnected, alive and lives in Dar es Salaam. The child reduce the stigma and discrimination stakeholders in Tanzania and beyond. The and to serve it best requires listening carefully calls me mother, not grandmother. She of persons with disabilities and approaches used will help to build strong to their voices and stories – and to the NGOs has done since her childhood, calling me older people. and inclusive policies which will contribute that support them. They may be the voices mama, mama... Her mother came to take the to informed implementation of the 2030 of the marginalised, but when listened to daughter to the traditional healer and later left • Because of their experience in this Agenda as well as the UN Convention on the properly, have the potential to be the voices her with me after the mother and the traditional study, peer researchers felt they Rights of Persons with Disabilities. It has also of the empowered. Local, national and global healer failed to “cure” the child’s disability.” also had a duty to raise awareness contributed to building ways of engaging with recommendations continue to gather force about both disability and ageing; CBPR methodology in the context of social from the findings. and advocate for individual’s right inclusion and disability, through the study’s “ I stayed at home to dignity, inclusion, and equality strengths and weaknesses. amongst government, village because they said leaders and families. that a person with hearing impairment Global recommendations is like a patient, Policymakers must: that he should • Ratify, implement and monitor the UN • Improve data collection and analysis Convention on the Rights of Persons with mechanisms on both disability and ageing not be engaged Disabilities (UNCRPD) and support the to increase knowledge. elaboration of a UN Convention on the in any activity” Rights of Older Persons (UNCROP). • Raise awareness about the experiences of persons with disabilities and older people • Promote the full and equal participation to counter stigma and discrimination. of persons with disabilities and older Other participants explained that they, as people in policy formulation at all levels, • Ensure SDGs-compliant development plans older people, have been mistreated by their with systematic processes for meaningful and policies to provide services that are children. They don’t feel supported or cared engagement. inclusive of persons with disabilities and for. It is a similar reality for a number of persons older people. with disabilities in the study. One participant (with a hearing impairment) said: “I stayed at home because they [family members] said that a person with a hearing impairment is like a patient, that he should not be engaged in any activity. I was just eating and sleeping. They sometimes assigned me some household tasks. My life became very difficult...”

18 Hear my voice: old age and disability are not a curse Hear my voice: old age andwww. disabilitysightsavers.org/voices is not a curse 19 In Tanzania, according to the 2008 National Justification for Hear my voice: old age and Disability Survey, an estimated 8% of the population is affected by some form of conducting this study disability are not a curse impairment (NBS, 2008). Many persons Ultimately, this research study informs efforts with disabilities do not have the same to provide services for and improve the lives A community-based participatory study gathering the lived opportunities as those without, especially of older people and persons with disabilities. experiences of persons with disabilities and older people in Tanzania when it comes to accessing health services, It contributes to filling knowledge gaps on education, employment and social protection. older people and persons with disabilities, According to the Tanzanian Disability Survey, and is a body of evidence that can be drawn Background an estimated 20% of persons with disabilities upon by stakeholders in different countries encounter some barriers when accessing with similar challenges. Wiith the completion Estimations by the World Health Organisation With one in nine people in the world aged health services (NBS, 2008). of this study, local stakeholders will have (WHO) and World Bank suggest that over 60 years or over, and a projected increase to greater evidence to ensure that the needs one billion people experience some form one in five by 2050, population ageing is a Similar to persons with disabilities, older and rights of older people and persons with of disability worldwide, most of them (about phenomenon that can no longer be ignored people also experience disproportionate disabilities are included in the development of 80%) living in developing countries[1]. (UNFPA and HelpAge International, 2012). levels of poverty and marginalisation (Burns interventions. This research directly engaged Globally, persons with disabilities face The opportunities that increasing longevity D. and Oswald K., 2014; United Nations, older people and persons with disabilities widespread exclusion. They are routinely present are endless, as are the contributions 2013).The majority of older people, especially because they have the greatest personal excluded from social, economic and that a socially and economically active, in LMIC (including Tanzania), belong to the knowledge of the issues. The story-based political activities and processes, including secure and healthy ageing population can poorest and most vulnerable groups. Their approach helps us to understand how and international development policy, practice bring to society. Although the reality of how capacity to meet their own basic needs when the issues raised occur. Though it and research. Exclusion reinforces the older people are treated is widely varied diminishes as age increases. It should not tells us what is happening, it cannot give us disproportionately high number of people across the globe, deteriorating health and be presumed that older people in LMIC meaningful data on the extent to which this living with disabilities among the poorest of mobility, loss of income and social status (including Tanzania) are protected and problem occurs. the poor. The cost of disability due to lost and effects of ageism manifest in the vast cared for by their families. For example, a income resulting from a lack of schooling and majority of older people. Social exclusion, study conducted in Tanzania by HelpAge employment, both of persons with disabilities discrimination, isolation and neglect are more International (Sebyiga B., 2001) indicated that and their carers, is estimated at US$1.2 chronic in countries where policies to address family care and respect are often undermined billion every year, or 1.7% of gross domestic the needs and rights of older people have not as a person grows older. There is, therefore, product (World Health Organisation, 2011). been well developed (UNFPA and HelpAge a call to address this gap created by the International, 2012). collapse of the traditional family support Article 3 of the United Nations Convention on system through a participatory approach that the Rights of Persons with Disabilities (CRPD) Global ageing has a major influence on involves older people. speaks of the importance of “full and effective disability trends. There is a higher risk of participation and inclusion in society”. Article disability at older ages, as well as age-related According to the 2012 population and 33 relates to national implementation and health problems that can affect sight, hearing, housing census, 5.6% of the Tanzanian monitoring of the Convention and states mobility and mental functioning, meaning population is estimated to be aged 60 years that “Civil society, in particular persons older people are particularly vulnerable to the old and above. Based on the UN report, the with disabilities and their representative poverty-related effects of disability. By 2030, number of Tanzanians over 60 years of age organisations, shall be involved and 16.6% of the world’s population will be aged is expected to triple between 2020 and 2050 participate fully in the monitoring process” 60 and over, and of those 73% will live in low (UNFPA and HelpAge International, 2012). (UN General Assembly, 2008). and middle-income countries (LIMC) (UNESA, As a result, the government is likely to face 2011). Older people may not consider increasing pressure to design an intervention themselves as having a disability despite related to social protection as a strategy enduring difficulties because they consider to reduce poverty among older people their level of functioning appropriate for (Mboghoina T. and Osberg L., 2010). their age. © ADD International

20 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 21 © ADD International

Overall objective Methodology

The overall objective of this study was to Study Area provide evidence on the specific nature and experiences of older people and persons with The study was undertaken in two districts disabilities from their own perspectives in to represent urban and rural geographical both rural and urban settings. variation: Kibaha Urban Municipal Council and the rural district of Nachingwea District. Specific Objectives The districts were purposely selected due to the presence of active projects dealing 1. To understand the experiences of with both older people and persons with social, political and economic inclusion disabilities supported by Sightsavers, and exclusion of older people and HelpAge International and ADD International. persons with disabilities from their own perspectives in Tanzania. Kibaha District Council was selected from among six districts: 2. To generate comprehensive knowledge Council, Council, Mkuranga which will guide national and global District Council, Council and policymaking, as well as the implementation Council. Kibaha District is Study design Advantages of CBPR include of development programmes emerging bordered to the north by the Bagamoyo (Banks S. and Manners P., 2012): from the 2030 Agenda and the Sustainable District, to the east by Dar-es-Salaam, to The approach taken for the study was Development Goals. the south by the Kisarawe District and to community-based participatory research • Joining partners with diverse expertise the west by the Morogoro Region. It is (CBPR) (Banks S. and Manners P., 2012). to address complex problems 3. To comprehend how older people and located at latitude -6,7667 (646’0.012”S) and This approach involves a commitment persons with disabilities understand • Improving intervention design longitude 38,9167 (3855’0.120”E). According to sharing power and resources, and inclusion and exclusion within the and implementation by facilitating to the 2002 Tanzania National Census, the working towards beneficial outcomes for all contexts of their families, communities participant recruitment population of the Kibaha Town Council was participants, especially communities. CBPR, and broader society. 128,488 (NBS, 2013).The district has three as a partnership approach, aims to equally • Increasing the quality and validity divisions, 13 wards, 53 street (mtaa) and 25 involve community members, organisational of research villages and covers an area of about 1,812 representatives and researchers, who total sq. kms (Regional Commissioner’s Office contribute expertise and share decision- • Enhancing the relevance and use of data Pwani, 2011/16). making and ownership (Banks S. and Manners P., 2012). It is a research approach which • Increasing trust and bridging cultural gaps Nachingwea is one of the six districts of recognises the unique strengths that each between partners (including participants) the in Tanzania (Regional person brings. The aim of CBPR is to increase • Providing resources for the Commissioner’s Office Lindi, 2016). It is knowledge and understanding of a given communities involved located in Southern Tanzania, latitude: phenomenon and integrate the knowledge -10°30’0” and longitude: 38°19’59.98. The gained with interventions, policy and social • Benefiting communities and esearchersr district is bordered to the north by Ruangwa change in order to improve the health District, to the east by Lindi Rural District, to alike through the knowledge gained and and quality of life of community members. actions taken the southeast by and to the Historically, CBPR has been developed in southwest by . According to various aspects of public health, but has not • The potential to translate research findings the 2012 Tanzania National Census, it has a been extensively applied to social inclusion. to guide the development of further population of 178,464 (NBS, 2013). Through developing this methodology in interventions and policy change the area of social inclusion, the study will contribute to the expansion of CBPR use.

22 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 23 Ideally, community members would actively Sample size and sampling Selection criteria for community peer researchers and NGO staff participate in the conception and design of a project, as well as data collection, analysis, We recruited 29 peer researchers in order Community peer researchers interpretation and conclusion. Ifakara Health to generate a range of stories from the Institute in Dar es Salaam partnered with experiences of both groups of older people Recruitment: Peer researchers with Understanding: During the selection community members with disabilities, older and persons with disabilities. Key informants disabilities were nominated by NGO staff process, it was imperative that community people and NGOs from the research districts from Tanzanian Non-Governmental from the steering committee and the peer researchers should be selected based and engaged them as peer researchers in Organisations (NGOs) working with these two advisory group1 as appropriate for the on good listening skills, empathy and full data collection, analysis and how to act on marginalised groups were also among the role of peer researcher. The research team and active participation in the peer research findings. However, the conception and design participants identified for story collection with from Ifakara Health Institute met with the workshops. All peer researchers were asked was based on the pilot study in Bangladesh regards to their experiences in dealing with proposed individuals and judged whether to participate in the study and to be available and so community members in Tanzania were the target group. they were suitable for the community peer for the whole duration of the research. All the not part of this process. researcher roles. peer researchers had a clear understanding Table 1 below shows descriptions of the of the meaning of ‘informed consent’. The project aimed for a reciprocal overall sample size of the study. The planned In brief, 19 community peer researchers were recruited: 10 from Kibaha and 9 from appreciation of each partner’s knowledge numbers of stories was 94, however we Adaptation and Support: Support was Nachingwea. The criteria selection was based and skills at each stage. Rather than creating ended up collecting 106 stories. This was provided to enable people with a range of on gender, age, disability, socio-economic knowledge for knowledge’s sake, the focus due to the additional peer researchers who disabilities, and from a range of ages, to characteristics and understanding. was on incorporating research and reflection were maintained from the reserve list. participate fully and safely in the research. in order to affect change in the project Disability, Age and Gender: Nine of the Appropriate adaptations were made and, in districts. The project itself did not fund these peer researchers were adults (above 18 years some cases, adjustments were requested changes based on the findings, but there old) and had different types of disabilities to enable full participation. This was are plans for global and national policy and (visual, mobility, hearing, albinism). Persons also common in the training venues and advocacy work, both within Sightsavers, with psycho-social disabilities and intellectual accommodation during any field work. HelpAge International and ADD International, disabilities did not participate as community and by partners based in Tanzania. peer researchers, but as participants. This NGO staff was agreed during the advisory group meeting as members felt they were ill- Ten staff from Tanzanian NGOs working with equipped to offer the appropriate support to Type of peer Number of peer Number of Total number older people and persons with disabilities persons with psycho-social disabilities and (physical, visual, hearing, intellectual, albinism) researcher researchers stories to be of stories intellectual disabilities during workshops1. collected per were selected, observing gender balance. Gender equality was also among the criteria It was imperative that NGOs participating person for the recruitment of the peer researchers. in the research should be those working at Ten peer researchers were older persons (as Community peer community level, among diverse communities 19 4 76 defined in Tanzania, this is age 60 or over). researchers and located in different parts of the country. Socio-Economic Characteristics: Likewise, a representative from the social NGO peer The peer researchers were selected from a welfare department of the Tanzanian Ministry 10 3 30 researchers range of localities in the study areas in order of Health and Social Welfare (MoHSW) to achieve an accurate representation of working with older people and persons community diversity in terms of ethnicity and with disabilities was invited to attend the Total 29 N/A 106 poverty. Care was taken to select people from workshops and become a peer researcher. across the community, including people who may be excluded due to different factors, and Table 1: Sample size in Kibaha and Nachingwea not only people who have existing leadership roles in the community.

1. For more information about the steering committee and the advisory group, go to page 28

24 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 25 Visiting the recruited peer researchers validation (see annexe 5 “report validation Ethical review Ethical principles workshop” page 72). The coded analysis The recruited peer researchers were considered all the experiences within a story, Ethical approval was sought from the Ethical The study followed the ethical principles visited by the research team (IHI staff) in without assigning importance to them. The Committee of Ifakara Health Institute and the recommended for CBPR by the Centre for their respective districts in order to gauge aim was not simply to use researchers to Medical Research Coordinating Committee Social Justice and Community Action and whether they met the criteria identified for code this data, but to use the activity to invite of the National Institute of Medical Research National Co-ordinating Centre for Public this study and the research activity. The policy, advocacy, programme and evaluation (NIMR/HQ/R8a/Vol. 1X/1965). The study Engagement (CSJCA & NCCPE 2012): team also used this opportunity to explain to team members to learn the process of team ensured that adequate information peer researchers the purpose of the study qualitative coding, and be immersed in the about the project was available at national, • Mutual respect – for example, being and what was required of them, as well as stories. The analysis was a three-tier coding regional and district health authorities. prepared to listen to the voices of briefing them about the upcoming training process as identified in Table 2: Meetings of the district officials from each others, accepting that there are in Dar es Salaam. The visit also provided diverse perspectives; an opportunity for peer researchers to ask of the study areas were convened in order Level of coding Explanation to explain the nature of the project to them, questions related to the project. • Equality and inclusion – for example, and individual written informed consent was seeking actively to include people whose Open coding The process of sought from the study participants. Data processing breaking down, voices are often ignored, challenging and management examining, comparing The study complied with the International discriminatory attitudes and behaviours and and conceptualising Ethical Guidelines for Biomedical Research ensuring information, venues and formats data for meetings are accessible; Data analysis Involving Human Subjects (Association W.M., 2000, Vallotton M., 2010). Each Axial coding Making connections • Democratic participation – for example, participant was given an information sheet Stories collected by the peer researchers between categories acknowledging and discussing differences about the study in Swahili, explaining why the were recorded (with the participants’ in the status and power of research Selective Selecting the research was being carried out, by whom, permission) using digital audio recorders participants, working towards sharing coding core theme by and what it involved for both participants (Sony # ICD – PX312), then transcribed power more equally, using language verbatim by a trained transcriptionist. In systematically and researchers. Participants were then everyone can understand; order to maintain anonymity, all personal comparing it to other asked if they had any questions and whether identifiers were not present at the point of categories. A core they agreed to take part in the study. The • Active learning – for example, ensuring transcribing. The first stage of data analysis one is the central confidentiality of all participants was assured. time to identify and reflect on learning and was conducted locally, with consultation from issue into which all The study involved low risk to participants, sharing responsibility for interpreting the the Institute of Development Studies (IDS- other groupings are and any participant with an acute illness or research findings and their implications UK) during a three-day analysis workshop integrated social needs was referred to a health facility for practice; to discuss interpretations of the data. or social welfare office. This was done in collaboration with all the Table 2: A three-tier coding process • Making a difference – for example, peer researchers of the study for a shared debating what counts as positive change understanding of key findings. Data quality and management and building it in as a goal; The peer researchers were asked to identify the important issues in the 106 stories, why All research activities were conducted in • Collective action – for example, agreed they thought they happened and how they accordance with internationally recognised visions and goals that meet partners’ were connected. This activity drew on socio- standards. Translated materials were differing needs for the research and for cultural, context-specific experiences of reviewed by fluent local partners to ensure how to share knowledge and power these community members. Alongside this, the report’s validity, and report validation more equitably; research staff at Sightsavers’ UK office coded workshops were conducted in the respective 36 interviews (just over a third of the total) study districts. Data was securely stored • Personal integrity – for example, accurate driven by the research question: How did (with independent backup) at IHI and later and honest analysis and reporting of participants experience ageing and disability? shared with Sightsavers. Researchers also research, being open to challenge and The findings from this second stage analysis maintained field notes to supplement the change and prepared to work with conflict. were later shared with the community data. All files were zipped and saved in both members in person for their feedback and password-protected folders and computers.

26 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 27 The research team ensured mutual respect, Steering committee meeting Advisory group meeting Definition of terms equality and inclusion and democratic participation while working with the peer The steering committee was set to have Like the steering committee, the advisory Disability researchers. Active learning took place two meetings, one during the planning and group was also set to have two meetings: one through the designing, analysis and validation the second before the dissemination of the during the planning phase and the second Throughout this document, the term of the final report. Through analysis and research findings. The first meeting took place before dissemination of the research findings. “persons with disabilities” is used as validation workshops, the team engaged on 16th April 2015 at Sightsavers’ office in The first meeting took place on the 22nd terminology adopted by the CRPD and in debate about what counts as ‘positive Tanzania, while the second will be conducted April 2015 at HelpAge conference hall in Dar used internationally (Freeman et al., 2015). change’ and what is ‘sustainable’. It prior to the dissemination of the report. Five es Salaam, while the second meeting will be Disability is a broad term used to describe committed to working together to achieve participants attended the first meeting: two conducted after the publication of this report. the barriers that individuals face as a result of change through shared vision and conflicting from IHI, and one from Sightsavers, ADD impairment or of limitations to their activities, The meeting was attended by representatives interests. Collaboratively, the team aimed for International and HelpAge International or an inability to participate fully in society from IHI, SHAVYAWATA, CCBRT, accurate and honest analysis and reporting, respectively. Among other things, the meeting (Burns, 2014). These barriers generally fall KISUVITA, ADD International, TLB, HelpAge whilst always being open to challenge. discussed the background, objectives and into three categories: methodology of the proposal, as well as International, MNH/MUHAS (mental health specialist), MoSW/Social Welfare Department The steering committee ways of improving the document. During the • Environmental eg inaccessible buildings discussion, members further proposed the and a sign language interpreter. The IHI and services and the advisory group recruitment of two sign language interpreters researchers presented the background of to facilitate the upcoming peer researcher the study, its objectives, methodology, study • Attitudinal eg stereotyping, discrimination Prior to data collection, there was a steering training workshop. During the meeting, it was areas and the selection criteria of the peer and prejudice committee and advisory group which had also suggested that a mental and intellectual researchers. Like the steering committee, the following responsibilities: to advise the • Organisational eg inflexible policies, health specialist be invited to the advisory the advisory group made some important research team about the project, research practices and procedures. group to advise whether or not to include input regarding site-selection justification, design, methods, site selection and peer persons with psycho-social disabilities and and the inclusion or exclusion of persons with researchers selection, background materials This study therefore adopted a diverse persons with intellectual disabilities. psycho-social disabilties. and useful contacts and comments on the understanding of disability encompassing, report and participation during dissemination. The mental health specialist expressed his for example, someone born with a congenital The steering committee was formed by four view that involving persons with psycho- condition such as cerebral palsy, or a person collaborating institutions: Ifakara Health Institute social disabilities and intellectual disabilities, who has damaged their leg in an accident, (the leading research team), Sightsavers, as both peer researchers and study or someone with schizophrenia, or an older HelpAge International and ADD International. participants, would be manageable within person with dementia, or someone with a The advisory group was formed by eight the research. He highlighted that peer chronic illness (Burns D. and Oswald K,, 2014). organisations working with older people and researchers with psycho-social disabilities persons with disabilities including the Ministry or intellectual disabilities would require and of Health and Social Welfare (MoHSW). It should receive extra support. However, included members from Disabled People’s individuals with psycho-social disabilities and Organisations (DPOs), Comprehensive intellectual disabilities were not used as peer Community Based Rehabilitation in Tanzania researchers because the advisory group felt it (CCBRT), Kisuvita Organisation, Tanzania did not have the skills to recruit and support League for the Blind (TLB) and a mental health meaningfully representative of these two specialist from Muhimbili National Hospital groups. This is an important finding of the and Muhimbili University of Health and Allied study in itself and requires a deeper look as Sciences (MUHAS). to why it was deemed difficult to provide the support required to individuals with psycho- social disabilities or intellectual disabilities.

28 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 29 Old age 1. Community peer researchers Districts These older people and persons with In developing countries – Tanzania in disabilities were from each of the two sites Nachingwea Kibaha particular – ageing is not defined using selected for the research: one urban slum the same common terms as in developed and one rural area. The selection criteria Sex Older Persons Total Older Persons Total countries as it encompasses the retirement for community peer researchers was their persons with persons with age (Ngallaba S.E. et al., 2016). For the disability, age, interests and gender. We disabilities disabilities purpose of the analysis, ageing in the were ideally looking for 16 community peer Male 2 3 5 3 2 5 Tanzanian context may be defined as follows: researchers, but ended up recruiting 19 “Ageing is a biological process which has its (explained on page 21). Female 2 2 4 3 2 5 own dynamic, largely beyond human control. 2. NGO peer researchers The age of 60 years and above, roughly Total 4 5 9 6 4 10 equivalent to retirement age in Tanzania, is These comprised staff from Tanzanian said to be the beginning of old age” (United NGOs who worked with older people and Table 3: Community Peer Researchers Republic of Tanzania, 2003). persons with disabilities. The criteria for their selection was their gender and experience Communication among the research team during the fieldwork Peer researchers of poverty and/or exclusion. In addition, selection criteria included organisation type During the fieldwork, all mobile numbers of the peer researchers, volunteers and the research Peer research is a form of participatory and geographical location, to ensure a good team leaders were printed and distributed to everyone. This was important to facilitate research. Peer researchers are people geographical spread and representation of communication not only among the peer researchers themselves, but also with the IHI staff. rooted within particular constituencies or diverse local NGOs. People with experience of participatory techniques and with strong communities who are supported as they Research design and planning workshop generate research with their peers. The peer networks were given extra consideration during the recruitment process. community peer researchers in Kibaha were A research design and planning workshop of a story. A note-taker recorded and proposed by the local NGOs working in the We recruited 10 NGO peer researchers was conducted on 12-15th May 2015 at documented all stories collected. A senior grassroots networks, including HelpAge working in Tanzania. The NGO peer Tanzania Episcopal Conference Centre. A researcher and a project manager from IHI International and ADD International, while researchers were represented by TUSPO, total of 29 peer researchers attended the took part as key trainers during the four days those from Nachingwea were proposed TLB, TAS, PSORATA, ASBAHT, TASODEB, training. Peer researchers established the of training. For more details, see annexes 1 to by the Nachingwea District Disability SHIVYAWATA, CHAWATA, KISUVITA and rules that would guide them during the 4 on pages 66-71 covering interview guides, Organisation. A breakdown of the community DOLASED. The NGOs who were invited to workshop. Participants were also asked to information sheet and consent form. peer researchers recruited in this study the training workshop were proposed during mention what they expected from the training. is shown in table 3 (over the page). Two Soon after the training, pre-testing of the story the advisory group meeting with the support groups of peer researchers were involved in After explaining the objectives of the research, collection was conducted in . of SHIVYAWATA. conducting the study: the principles of participatory research Each peer researcher collected at least one were introduced. The training session was story. During the feedback session, each team interactive, with peer researchers contributing reviewed the story collected and the feedback to the discussion under the guidance of the was then shared with the whole team as a facilitators. In most of the sessions, the peer means of improving the ways of gathering rich researchers were divided into small groups. data through skilled story collection during The NGO peer researchers formed two the actual fieldwork. The pre-testing exercise groups of five individuals and the community was very useful in several ways and included: peer researchers formed three or four groups testing the flow and relevance of the prompt of five to six individuals. Among other things, questions, wording and terminologies; testing peer researchers were trained on story (data) subject understanding by the community collection, ethics, informed consent process, peer researchers; testing logistical issues and how to gather rich data and documentation estimating the duration for the actual fieldwork.

30 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 31 The prompt questions agreed for The prompt questions agreed for Stories community peer research were: NGO peer research were: One-hundred and six stories were collected in total as shown in Table 4 below. 1. Tell me a story about a challenge you 1. Tell me a story about how economic, have faced as an older person or social or political changes in Tanzania have Nachingwea Kibaha Dar es someone with disabilities. impacted/influenced an older person or Salaam someone with disabilities you know. 2. Tell me a story about something that Sex Older Persons Total Older Persons Total NGOs happened to you because you are an older 2. Tell me a story about an older person or people with people with person or someone with disabilities. someone with disabilities who is unable to disabilities disabilities live the life you think they would want to. Male 16 8 24 14 10 24 21 3. Tell me a story about a person or Female 8 4 10 6 9 group of people who you have been 12 16 unable to support. Total 24 12 36 24 16 40 30

Mid-workshops: Kibaha, Nachingwea and Dar es Salaam Table 4: Number of stories collected (106 in total) A total of 48 participants were above 60 years of age, 13 of them with a disability (see Table 5). Mid-workshops were conducted in Kibaha, The mid-workshops were helpful in different A total of 28 participants had a disability who were under 60 years of age. Thirty participants Nachingwea and Dar es Salaam and were aspects. They reminded the teams about were working either in the field of disability, ageing or both as shown in Table 6. facilitated by the IHI research team. The what exactly they were supposed to do. objective of these workshops was to assess The review of the collected stories was done if the peer researchers were on the right track through the peer researchers’ feedback, S/No Participants Number S/No Field of work Number in terms of identifying the right participants, and recorded stories were played back in a the mode of asking the guide questions and computer so that peer researchers could hear 1 Older people 13 1 Persons with 24 good probing, and maintaining the quality of their stories and provide comments. These also with disabilities stories collected. Except for the NGO peer workshops were very useful to both peer disabilities researchers who collected stories for one day, researchers and the research team, with the 2 Older people 3 all community peer researchers collected two input received helping to improve the detail 2 Older people 35 3 Social Welfare 3 stories over two consecutive days before they and relevance of stories collected. without (both persons attended the mid-workshops. disabilities with disabilities Total 48 and older people) Table 5: Older participants and disability Total 30

Table 6: Participating NGOs/Institutions

32 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 33 © HelpAge International

Research analysis workshop In September 2015, a three-day research The peer researchers were asked to prepare analysis workshop took place in Bagamoyo. their coloured stickers ready for the clustering The community and NGO group worked exercises on the third day of the analysis together to analyse the 106 collected stories. workshop. The facilitator assured the peer The selected pairs were asked to read seven researchers that issues put on the board into stories together and identify each story’s emerging categories could later be shifted causes and consequences. Each pair of to another category or be placed in more peer researchers was grouped to include than one. The clustering exercise continued participants from both urban and rural areas. until more than twenty categories were The participants were requested to write the clustered on the board as emerging themes various issues within the story on the back of of the stories. From these, priority areas a piece of paper with a coloured sticker for were identified for policy focus and advocacy reference purposes. The analysis processes efforts going forward. In identifying the priority started by identifying the key issues as well as areas, the peer researchers identified what telling what the story was about. In addition, they considered important in the stories and peer researchers were asked to document why, the key messages and how events were what was interesting – and what was difficult linkedin terms of causes and consequences. – during the analysis process.

34 Hear my voice: old age and disability are not a curse Findings 1. Access to education “ Services that were offered by the and quality learning government in the past are not currently provided. For example, the Peer researchers’ chosen priority areas on which to focus policy Participants believed that the government has government helped purchase the and advocacy efforts not invested much in this sector, especially for persons with disabilities. Teachers are bicycles and other equipment, and After having gone through the clustering exercise, eight issues emerged as “priority areas” not adequately trained to teach children with provided sponsorship to students and were picked for further discussion in groups. The teams were divided into three separate disabilities, while school infrastructures are with disabilities in government groups: one with NGO peer researchers and two others made of community peer researchers. not accessible. The participants further noted schools and colleges. Currently Each team discussed four issues separately and further connected the issues in the big map. that the community does not provide enough things are different; even if the It was important to describe the issues carefully so that people with visual impairment could support to persons with disabilities. Likewise, easily understand. The ordering of the below eight issues is simply the authors’ preference. families of children with disabilities have not opportunity exists to attend college, paid serious attention to issues related to the cost of living is high, there is no education; for example: most children with free food or exercise books so one Eight priority areas for policy focus and advocacy efforts disabilities are left at home without being cannot afford it. So, the trend of sent to school. Cost of living and illness persons with disabilities who go to 1 Access to education and quality learning were among the reasons for children with disabilities to quit college or school. Despite school or college has gone down. Children with disabilities remain 2 Access to health services the free education policy for children with disabilities, parents still pay school fees at home as their family members like other students without disabilities. Issues fed back from NGOs cannot afford to pay school fees.” 3 The following typical statements relating to the challenges faced were recorded: Person with physical disability, Poverty relating to income and dependence 4 54 years, Kibaha District 5 Attitudes towards witchcraft and albinism “ 6 Relationship difficulties and marriage breakdowns When I was discharged from the dispensary, I lost my hearing. I 7 Sexual violence and gender issues continued staying with my aunt at home while using drugs prescribed 8 Poor treatment from family at the hospital and felt better. When I came back from the hospital, I Table 7: Main priority areas identified by peer researchers within the 106 stories couldn’t hear properly. I was bright but started to drop in the class... I left school because I couldn’t hear what was being taught so I saw no importance in school.”

Person with hearing impairment, 18 years, Nachingwea District

36 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 37 Discrimination from teachers and fellow “ When I was in primary school, 2. Access to health services “ There are challenges related to students was also among the reasons for I would tell the teacher that I health issues. Firstly, there is no children with disabilities to quit school: A number of issues arose during discussions could not see. I would ask: “can on health-related matters facing older people special place for people with “ When I attended school, I was you please read for me?” But the and persons with disabilities. For example, disabilities to see the doctor or take humiliated by teachers and decided teacher would say: “why do you participants noted that their extended families the prescribed drugs. Therefore, (a family group which consists of parents, to quit. I was the only person with come to school if you cannot see?” people with disabilities stay in the Besides, there were no user-friendly children and other relatives living together queue just like anybody else who albinism in the class. For example, or in close contact, Dictionary of Unfamiliar ” the teacher would tell me that I learning materials. Words 2008) was more supportive in caring has no disability. Sometimes people with disabilities miss the service had to sit at the front because I had Person who is blind, for persons with disabilities and older people a visual problem and couldn’t see 25 years, Kibaha District compared to a nuclear family with no relatives they went to the health facility to take care of them. However, modern well, but in fact I was already in the for – eg medicine stocks running economics has changed this, with many out in public health facilities. front seat.” participants mentioning that the traditional “ When I reported at the college, I system of relying on family was more This is a big challenge because Person with albinism, was advised to change my course beneficial to older people and people we need assistance.” 19 years, Nachingwea District due to my disability. I went for the with disabilities. Person who is blind, environmental engineering course Participants also mentioned that a lack 50 years, Kibaha District “ While in school, I got harassed. It offered at the Ardhi University of medical equipment and supplies at started when I was in class two and (UCLAS) but when I started, I was health facilities was among the major was mainly from fellow girls.” again advised to change the course challenges faced by the health care system just because I was a person with in Tanzania. Although people with National Person with physical disability, disability. I went back to the main Health Insurance (NHI) cards (the NHIF was 32 years, Nachingwea District established by the act of the Parliament no. campus at the University of Dar 8 of 1999 and began its operations in 2001, es Salaam, but when I went there, Zitha M., 2012. It was intended to cover “ My mother asked me to sit at time had already passed (about public servants but recently, there have been provisions which allow private membership, the front of the class, but it didn’t one month) since the studies had started. I was informed that Yeo R. and Moore K., 2003) can pre-pay help. She decided to take me to a for their services, a shortage of medicines college to learn mechanics and I since other students had already was reported to be among the main later went to VETA2 but my main attended classes and been awarded challenges facing persons with disabilities in problem was ear impairment. I was marks in some of their coursework, health facilities. For example, persons with disabilities may travel miles to their nearest doing excellently during practical it was not possible for me to join classes. I was therefore forced to health facility but upon getting there, may not sessions, but not in the classroom. be treated because the clinic is not accessible I lost hope as there was no sign postpone my studies.” to support persons with disabilities. This is explained opposite: language translator, and I went Person with physical disability, back home.” 41 years, Nachingwea District

Person with hearing impairment, 33 years, Kibaha District

2. VETA – Vocational Education and Training Authority

38 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 39 Poor communication skills among health care The study participants acknowledged that “ I have not been paid my pension Furthermore, peer researchers said that the providers are also mentioned in many stories because the cost of living, including the price since I retired. I have stopped community should also help the government as recurrent barriers in most health facilities. of health care, has gone up, family support to take care of older people and persons with Discussion with participants from the NGO to older people and persons with disabilities following the issue because I have disabilities. Another proposed solution was to group reported that health care providers has gone down. It was also reported during written a lot of letters. I am now train health care providers to provide better have not been trained in sign language, for the discussion that there is a circular from having a difficult life situation. In care to these particular groups. instance, to communicate with people who the Ministry of Health which states that general, older people are facing are deaf or hard of hearing. health services for older people and persons hardship; they are not respected, “ Some infrastructures such as with disabilities are free of charge. However, not cared for, and neglected. If I [hospital] beds are not suitable for “ I have experienced different participants reported that in some regions, go to the hospital, I am not even people with disabilities. Moreover, challenges in my life. Firstly, I have this circular has never been received. Participants from the NGO group said that cared for unless I have money to it will also depend whether the been discriminated against by some further advocacy is needed to ensure that the buy drugs. So where can I get the nurses are humane, if they will help of my family members, and I do not government implements the circular so that money?” you get into the bed. I remember get good cooperation from them. If older people and persons with disabilities can another sad story in which a benefit from free health services. I become sick, my relatives do not Older person, pregnant woman who was blind take me to the hospital. I usually go 82 years, Nachingwea District “ Older people are not well treated. went to give birth at the health alone but I have been experiencing facility. She delivered twins but a lot of difficulties because I don’t The government says that “ There was a time when I reported that she was given one know how to express myself, treatment for older people, children experienced some coughing and baby only.” because health care providers do and pregnant women is free of I reported it to the village leaders. not understand sign language.” charge, but this is not the case. If Participant from NGO, you go to the hospital, the doctor I was given a letter to get free 46 years, Dar es Salaam Person with hearing impairment, tells you that your prescribed treatment at the hospital. I used this 32 years, Kibaha District service for a little while but they drugs are not available but can be In addition, participants acknowledged purchased in the drug shop. This is (the hospital staff) took away the that although there was a very good policy ” letter and told me that I was not “ With regards to health services, unjust and it pains me. (Aldersey, H.M. &Turnbull, H.R., 2011) in entitled to get free treatment for the place dealing with issues related to the rights there are some challenges relating Older person, type of illness I had. From now on, I of older people and persons with disabilities to communication barriers with 70 years, Kibaha District must go with cash to get treatment. in Tanzania, it has not been implemented. health care providers. For example, For example, older people are exempt based If I do not have money, I just stay at the medical personnel don’t on policy documents but are still incurring home and buy some Panadol.” understand what I’m saying.” some medical expenses related to the purchases of drugs. Older person, Person with hearing impairment, 70 years, Nachingwea District 27 years, Kibaha

40 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 41 3. Issues fed back from NGOs “ There was a person with vision “ We receive different people seeking The above stories reveal how much NGOs impairment who was living with his assistance. Some people are OK value their work with other stakeholders, Limited financial resource was reported as however their efforts to provide capital and one of the main challenges by participants. relatives in Mjimwema Kigamboni. with the advice we provide which equipment to positively change the lives of NGOs’ budgets depend mostly on donor It is unfortunate that he didn’t can change their lifestyle, but persons with disabilities and older people is support and limited funding from the attend school. His relatives were others are in need of equipment frequently hindered by limited financial backup. government. Some NGOs reported to not being fair – he was living in a and other different services which For example, TLB has been supporting not even have a permanent office for small room with a hole he used we cannot afford.” schools for people with visual impairment in their activities, while subsidies from the different ways, as explained below: as a toilet. He was given food in government that were given in the past have Participant from NGO, now stopped. Previously, NGOs used to get the same room. As an NGO, we 48 years, Dar es Salaam “ A lack of learning materials for financial assistance from the government. received this information and students with disabilities has The government’s budget to NGOs was went to see him. He was not even been a main challenge. There about 15 million Tanzanian shillings (approx. permitted to go outside or wash “ For most of those who want to GBP£4900), which was an average of have been delays in purchasing 1.5 million for every organisation (approx. his body, and was sleeping on the set up a business, we do not have and distributing this equipment GBP£488). Despite the fact that funding ground. He never changed his enough capital to support them. We to the special schools. This has was still not enough, the support was later clothes. We met his relatives whom have limited financial resources. I made the learning environment stopped for unknown reasons. Participants he was living with. Then when we also worry about what happens next difficult for the students. In this said that they have started some initiatives reported this story to the public in for the young boys with disabilities to enable the government to resume funding case, TLB decided to look for other NGOs that serve people with disabilities. 2008, our project sponsor wanted who have completed school. We development partners to rescue Although the amount given is helpful, it us to visit the house again with had been working with one of the the situation. The association is still not enough to cover these NGOs’ people from the media but when directors of training at VETA who contracted the Kilimanjaro Blind budgets. For example, some organisations we went to the household, his allocates 10 posts for students with Trust Association to supply special like CHAWATA have many more members relatives said he has been taken to disabilities every year, but he has compared to the Tanzania Albino Society papers used by persons with eye ” (TAS), but were receiving equal funding. This his relatives in Tanga region. been relocated. Ten posts wasn’t impairment for about two years. much, but it was helpful.” is impractical as some DPOs have many Participant from NGO, In that contract, we had also more members and a broader coverage than 48 years, Dar es Salaam Participant from NGO, requested the maintenance of the others. Besides, in various DPOs, some 43 years, Dar es Salaam members are representatives of persons Perkins braillers and the purchase with disabilities. They don’t have a disability of new machines for people with themselves and do not effectively and “ This organisation is meant to vision impairment.” realistically represent persons with disabilities. help older people who fought in The following typical statements highlighting World War II. But in fact, nothing Participant from NGO, 44 years, Dar es Salaam NGO issues were recorded: is being given to them as they are waiting for rent to be collected from the buildings left by the British colonialists. This has led to unavoidable confrontation among the members.”

Participant from NGO, 62 years, Dar es Salaam

42 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 43 4. Poverty relating to income “ With my old age, I am paid a During the discussion, some of the peer “ Another challenge is the availability pension of 50,000/= Tshs per researchers said that being older was the of employment opportunities. and dependence main reason for living a poor life in both the month (approx. GBP£16). However, urban and rural districts. There were little Nowadays, we hear songs about Older people and persons with disabilities the money is just paid once lack of employment for the youth. face a number of challenges related to opportunities available related to income- poverty, income and dependence, with – 150,000/= (approx. GBP£48) generating activities for older people. We have asked the Ministry participants from both groups reporting to every three months. I have to provide soft loans to the have little income. During the discussion, dependants – six children, a wife “ I am old, but when I look ahead unemployed youths. We have also older people complained about limited and grandchildren. Other children of me, I can’t sleep at night. I see I established SACCOS (a local fund) support from the government and the have become adults and are will face difficulties in my old age among our members so that they community. For those few older people who because I have no savings in the were formally employed, they reported to independent and live on their own. can get loans from our savings. We have received very little amount of pension Three months without money? I bank and my pension is small. I have also asked other stakeholders which could not substantially sustain their have to get a loan somewhere so have pain so I am supposed to get such as the Foundation for Civil cost of living. For example, the amount that I can pay it back when I receive treatment at the referral hospital. Society to include components on received was at times also used to take my pension.” I am supposed to go back to income-generating schemes in care of their children and grandchildren. Muhimbili National Hospital every Lack of employment was also mentioned their projects to help older people Older person, three months, but I can’t afford it. as a challenge for persons with disabilities. 70 years, Nachingwea District and people with disabilities.” The following story extracts summarise My life ahead will be difficult – I key challenges related to poverty, income can go outside the house now but Participant from NGO, and dependence. 44 years, Dar es Salaam “ People with disabilities are in the months ahead, I will not experiencing problems. This is manage. This situation will even because we are not employed. hinder me from getting my daily “ I got my primary education at Soga We do not have enough income, bread. That is why I can’t sleep at and was then employed at Kibaha yet we have children depending night. The hours pass by until the Education Centre in 1979. I worked on us.” morning. I am always thinking but for approximately twenty years. I I cannot get the answer.” started to experience eye problems Person who is blind, 50 years, Kibaha District Older person, in late 1996 and my employer 61 years old, Nachingwea paid all my hospital bills at Tumbi hospital, but I could not get cured. I was referred to Muhimbili National Hospital where I was operated on, but from there I lost my eyesight. I went back to my job but started experiencing problems associated with discrimination and then got made redundant in 1997.”

Person who is blind, 50 years, Kibaha District

© HelpAge International

44 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 45 During the discussion with peer researchers, There was another case whereby a man 5. Attitudes towards “ Organs of people with albinism are they reported that some people pretend with disabilities went to seek a job for his perceived to have good luck (nuru to live with a disability to take advantage wife so that they could raise their household witchcraft and albinism ya mafanikio).” of the system. This could be due to income. His wife was successfully employed The discussion with the peer researchers poor understanding, and possibly poor but was later married to someone else. Peer highlighted that the organs of persons with Person with albinism, coordination of the community support for researchers have reported that the majority albinism are used in witchcraft activities. It 32 years, Kibaha District persons with disabilities. The following quote of older people and persons with disabilities was reported that there have been meetings illustrates this issue: feel they are less valued because they receive with different stakeholders to identify the little income. For example, there was an market for these organs. Although the study “ There was an incident whereby “ I remember there was a case of older man in Nachingwea District who asked could not establish evidence during the some girls in the community a young man who pretended to local government officials to provide him with above mentioned meetings, participants a platform so that he could make a local wanted to have a relationship be deaf and ended up raising two reported that the organs were most likely vegetable oil-grinding machine, but was not with a person with albinism so million shillings (approx. GBP£650). sold in Tanzanian goldmines and outside given the chance to exercise his idea. the country. This information was not based that they can have good fortune. He went to the office of the district on participants’ experiences but was based During the discussion, participants said that Most of the time, traditional healers commissioner and said that he was on rumours in the community. It is also some parents use children with disabilities mislead society for things that are perceived that the organs of persons with studying in Washington, America as a means of generating income due to the albinism can bring about success, which not realistic.” and had just come to Tanzania for a poverty they live in. Likewise, there are some is not the case. In addition, some of the holiday. He claimed he was unable persons with disabilities who beg because Participant from NGO group, traditional healers mislead the community by they don’t have any other choice. 50 years, Dar es Salaam to go back to college in Washington claiming that organs of persons with albinism due to a lack of money and so he are linked to omens of good fortune. “ needed financial support. He added A woman with albinism was living alone. Since there are There is still unfounded belief among that his family was poor. The district traditional healers and community members commissioner agreed to raise funds, beliefs associating albinism with linking albinism with good fortune. However, and all heads of department and good fortune in our community, the idea of using the organs of persons with albinism as a source of good fortune were workers in the district council were she was raped by nine people who wanted to get rich. She got refuted within the group discussion and asked to contribute. The exercise feedback sessions. went well – we were able to raise infected with HIV/AIDS. Since she had no alternative, she went on enough funds, and the young man “ There is no relationship between begging and got skin cancer. As was given the money so that he albinism and good fortune, this is she was suffering from skin cancer, could go back to the college in only witchcraft. But there is a belief she didn’t know what to do to Washington. However, after two that one is blessed if one happens survive. As I am talking to you, she days, the district commissioner met to have a child with albinism.”” the young man (who had claimed to continues to while being infected with HIV and having skin cancer.” Participant from NGO, be deaf) in a bar drinking and talking 50 years, Dar es Salaam to someone.” Participant from NGO, 62 years, Dar es Salaam Person with physical disability, 48 years, Kibaha District

46 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 47 © ADD International

There was also another case related to a child “ In Tanga, we started to hear with albinism who wanted to study, but was that there were people who met with a lot of challenges. The child was discriminated against by his school friends. were looking for us (people with He was nicknamed “dili” (meaning “deal”) albinism). My colleagues were whenever he attended school. He was feeling making jokes, saying: ‘Who is very sorry as he didn’t like the name. He was escorting you? Who are you with encouraged by his aunt and grandmother today?’, then I would answer ‘I am who kept telling him that he should not stop going to school. alone’. Then they would say: ‘You know that there are people who It was further reported during the discussion want to kill you and you are still with peer researchers that in the old days, walking alone?’ When these killings there was a misconception that persons with albinism never die, but they instead get lost. were prolonged, my father had to Peer researchers reported that – according to stop me from leaving the house. the tradition of the Sukuma tribe in the lake He said: ‘You should stop doing this zone – whenever a person with albinism dies, business far away from home. You his grave is dug inside the house. There is had better stay at home because a similar situation happening currently in the lake region where older women with red eyes anything can happen when you are being killed because of suspicions that are away from the house and it they are witches. In this case, there is a need may result in a serious problem.’ It The government issued a circular to protect “ Whenever there is an election, to enforce the use of an ordinance witchcraft is better for somebody to kill you persons with albinism against attack and the killing of people with albinism abuse, but it has not been fully implemented, act (in dealing with witchcraft, several than to cut off your body organs, increases. This year, the killings doctrines of ordinary law provided sanctions as the killings went on despite the existence because you will become even were increasing but the community intended to restore and penalties subject of the circular. The main reported challenge poorer. At this stage we are already by the peer researchers was poor law raised their voices and it stopped to cruelty of the witchcraft abuses; Mesaki S., 2009) which was established during the poor; when you lose your organs enforcement. One peer researcher recalled for a while. If that had not been the colonial period so that older people and you end up in extreme poverty.” an event which happened just before the case, we could have experienced a general election in Mkuranga district where a persons with disabilities can live like others. group of unnamed people wanted to remove greater number of deaths of people Person with albinism, Killings of persons with albinism have the genitals of a person with albinism. They with albinism.” 36 years, Kibaha District created fear among this particular group. managed only to cut a piece of the person’s Participant from NGO, This persecution has even disrupted their ear, yet the culprits were not captured. 62 years, Dar es Salaam lifestyles as some of them are now staying During the discussion with participants at home without work. Children have from the NGO group, it was mentioned that abandoned school and this has increased politics is perceived as one reason for the their dependence. The following typical killing of persons with albinism because it statement was reported: mostly happens during election periods. Peer researchers explained that people believe politicians are asked by the traditional healers to bring organs of persons with albinism. The following typical statement was recorded:

48 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 49 6. Relationship difficulties and Most women are dependent on their Likewise, there was another case whereby “ Later on, after completion of my husbands’ incomes. Sometimes a marriage an older person was neglected by his family studies, I wanted to marry but marriage breakdowns is seen as a favour to women with disabilities. and community members just because he The following quotes put it clearly: was poor and had no income. During the I faced some challenges to the During the discussion about this topic, peer first lady I approached. Although researchers reported that some parents discussion, participants reported that older take over the roles of choosing a fiancée/life “ Most families live by depending on people are not involved in social development she agreed to marry me, she was partner for their children. They added that this the husbands’ income. Usually when issues in their respective localities. Their discouraged from getting married expertise is not utilised in village government- might be among the reasons for difficulties a man terminates his employment to a person with disability. I went related activities either, regardless of the post and marriage breakdowns. One of the contract, his family gets into trouble. to the second one, whereby the participants said: they had been serving in the past. Most men who marry people with experience was similar to the Families of women with disabilities have previous. I told my mother that I “ Parents have much influence disabilities usually discriminate also reported being sometimes abandoned do not expect to marry and she about their children’s marriage. against their wives, whereas women at their homes with little support. Moreover, asked me why. I told her that there They can sometimes dictate that do not discriminate against men unfair distribution of wealth to persons with was no woman who loved me, their daughter or son will marry with disabilities.” disabilities has also featured in the stories. Older people and persons with disabilities but later on – I remember it was so-and-so. However, these young Participant from NGO, have reported that they receive little or no at the end of 2004 – I was lucky men could also have their own 48 years, Dar es Salaam share of inheritances. to meet this woman with whom I choice which contradicts their live to date. I told her my intention, parents’ selections.” It is evident from this study that poverty “ The man who played an may be a contributing factor for someone thank God she understood me, but Participant from NGO, intermediary role in our marriage losing his or her rights. For example, one she experienced a similar situation 48 years, Dar es Salaam woman could not inherit money from her with the people surrounding her. told the father of my child that deceased child who had been working according to his religion, he should as an immigration officer. The woman Some of her friends told her: ‘You In addition to the above, peer researchers provide support to the mother and had been heavily dependent on her late got married to a person with reported that some parents might be after child for a period of three months. child for everything and was now left with disabilities, ahh!’ Many were sorry, the wealth of their child’s spouse. This However, my husband refused a grandchild. The woman is now living a but she ignored them.” was among the reasons for conflicts within difficult life as she has no other income. families, as well as marriage breakdowns. to provide me with support. He During the discussion, peer researchers felt Person who is blind, supports only his child. It is OK if that the Ministry of Health and Social Welfare 41 years, Nachingwea District A lack of empathy for persons with disabilities he has decided to not support me. department does not receive enough funding was also reported as a contributing factor for I cannot force him to support me if to follow up issues related to older people family difficulties. Peer researchers reported Peer researchers proposed the inclusion he has decided not to.” and persons with disabilities. However, this that family difficulties also happen as a result was challenged by an NGO peer researcher of advisors, such as law professionals, of the looting of properties belonging to Person who is a hearing impairment, working in the department. on various aspects of social welfare in persons with disabilities. 35 years, Kibaha District order to help older people and persons There was another case related to a person with disabilities. with disability who wanted to get married and faced some challenges just because he had a disability. In this story, he approached his fiancée and proposed to marry her and she agreed, but the people surrounding the woman were unhappy and discouraged her from getting married to someone with a disability:

50 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 51 7. Sexual violence There have also been concerns around people 8. Poor treatment from family “ This child’s mother came here with intellectual disabilities. Stories have shown and left her daughter with me and gender issues a notable amount of sexual harassment, as is A lack of support from families was reported described in the following quote: as a challenge by persons with disabilities when she was very young. Her With regards to sexual violence, peer father is alive and lives in Dar researchers reported women with disabilities and older people in the study districts. Other being exploited sexually, threatened and “ We met a girl with intellectual reported challenges were the needs of older es Salaam. The child calls me mistreated. Furthermore, peer researchers disability living comfortably with people and persons with disabilities being mother, not grandmother. She has ignored. Some children were being mistreated reported that men who marry women with her parents in Kimanzichana village. done since her childhood, calling disabilities tend to be convinced by their just because of their disabilities. Some But what we found when we parents see a child with disability as a burden me mama, mama... Her mother friends to leave their partners. In addition, came to take the daughter to the some of the women had concerns of being visited her was really shocking. Her and therefore decide to abandon that child harassed sexually, including being made to parents had found a man whose with other family members. The following traditional healer and later left her perform anal sex against their will. The detail role was to take care of her sexual quotes summarise the issues: with me after the mother and the of the story is as follows: desire. We felt very sorry when we traditional healer failed to “cure” “ I have encountered a lot of got the information because the the child’s disability.” “ My husband decided to divorce challenges in my lifetime. Firstly, girl could have chosen her own me because he forced me to have I have little education. I left school Older person, fiancé. But the parents informed her 80 years, Kibaha district anal sex and I refused. That was my when I was at standard six. I was that they would choose someone. first reason for our separation – I very clever at school. When I We tried to discuss this issue with thought I could not do it. I told him reached grade six, my relatives There were some stories of older men the parents, but could not reach that I could not do it because it is sent me to a village. Village life and women who reported that they were a consensus. The parents said forbidden in our religion and it is was difficult and I decided to go mistreated by their children. Some of the that they had the right to select children who were responsible for taking not safe for human health. The man back to my father. My father did someone who could take care of care of their parents were described as became angry and proposed our not give me good support. I stayed their daughter. We felt very sorry having never shown love and humour separation. He stopped providing at home because they said that towards their parents. because the girl had the right to the services. He confused me and a person with ear impairment select someone to marry herself, left me with nothing. I asked for (deaf) is like a patient, that he but we think this was done because my divorce and he gave it to me. should not be engaged in any she was a person with disabilities.” I stayed alone.” activity. I was just eating and Participant from NGO, sleeping. They sometimes assigned Person with a hearing impairment, 48 years, Dar es Salaam me with some household tasks. 35 years, Kibaha District So my life became very difficult.”

Person with a hearing impairment, 32 years, Kibaha district

52 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 53 Participants’ experience of ageing and disability as shown by coded analysis

As the peer researcher analysis included their On an interpersonal level, there were various A main theme that emerged was the huge A key theme that emerged from experiences opinions on what they considered to be main experiences of from both groups. There impact on primary and key relationships at both an interpersonal and societal level issues, the analysis was then triangulated were stories of domestic abuse and a few as a result of individual and community was that a number of persons with disabilities by researchers who coded a selection of about sexual fear. Positive experiences experiences, for both persons with and older people felt as though they were interviews from the original 106, asking the of relationships in the community were disabilities, and to an extent for older invisible. This, in turn, affected the individual research question: How did participants common, ranging from being respected people, There were many examples of experiences already stated above. A theme experience ageing and disability? without for their skills to receiving assistance from challenging family relationships and marriage that emerged mainly from experiences at both any emphasis on importance of issues. the local mosque, Catholic priests and breakdowns. A few stories revealed a strong an individual and societal level was the building The findings from this coded analysis were neighbours, as well as support from police, and positive marital experience, despite poor of self-empowerment and help-seeking validated by the peer researchers through their workplace, peers and family. There were community experiences. behaviour. Some were proud that they were workshops conducted in their own localities. stories of good relationships with neighbours. still able to live independently, get married and Negative experiences ranged from health On a societal level, NGOs related to disability have children whilst coping with a disability. The first stage of coding simply listed what stigmas and mistrust of the capacity of and older people shared a pressing need for Others showed a strong sense of self-worth, was happening throughout each story. The persons with disabilities to exclusion from more support of their work at a governmental and one person identified as “a one-person second stage linked what was happening social activities, taunting when younger for level, both financially and by acknowledging army”. Bad experiences led a few to forge an in all the stories to find patterns between a parent’s disability, exclusion from religious the impact and issues faced. Persons with independent life and find their own value. them. The third stage looked carefully at activities, a lack of help from young people disabilities experienced political barriers, the patterns and created the common in the villages, old age being viewed as a discrimination in education, being denied work Often, participants’ individual, interpersonal themes emerging from the group of stories. sickness, lack of access to toilets and privacy, opportunities and poor access to work as a and societal experiences of disability and The themes were then grouped into and resentment from those being relied upon result of a lack of appropriate transport. Both old age increased their levels of poverty. three categories: individual, interpersonal to provide support. persons with disabilities and older people This created a vicious cycle of poverty (interaction with friends, family and had difficulty accessing appropriate health which worsened their situation, making community) and societal level. This grouping Various stories revealed that traditional care. Some older people shared positive them even poorer. emerged naturally out of the themes. methods were encouraged in local experiences of health care, and persons with communities – with both positive and disabilities had some positive experiences of Throughout the stories, there were examples On an individual level, some participants negative effects. One theme that was specific school. Both groups shared stories of support of experiencing stigma and discrimination spoke of having multiple illnesses, at times to disability was fear of extreme persecution from social services and NGOs. for both older people and persons with with one illness triggering another. Many and attacks on persons with albinism. Stories disabilities, but also empowerment – often in experienced emotional difficulties, such as about this revealed killing attempts, fear and the same story. The findings of the analysis negative self-perception, stress, various rejection by others of albinism, and general are summarised in the following diagram. effects on their mental health and, at times, discrimination that left a psychological impact a sense of hopelessness. Many participants on those targeted. had a high exposure to death. Older people and persons with disabilities shared memories of being young, with both positive and negative stories to tell. Older people shared how they felt about young people they came into contact with now, often negatively, though there were also positive instances of help being given by a young family member.

54 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 55 Voices of the marginalised – Tanzania The coded findings were also The attitudinal domain: complexities Tanzania considered through the lens of the surrounding domestic abuse emerged, as physical, social and attitudinal domains: did extreme persecution of people with albinism. Specific to albinism, two killing The physical domain: both persons with attempts were cited, along with others’ Research question: disabilities and older people experienced fear and rejection of albinism, and general How do participants experience multiple illnesses, sometimes causing or discrimination. More generally, people with ageing and/or disability? exacerbating each other. They also described disabilities often experienced mistrust in details of their impairments or the effects on their capacity and resentment from those their bodies due to older age. Transport issues helping them when help was required. One were raised and injuries from domestic abuse participant with disabilities was hindered described. Both demographics of participants from progressing in politics due to others’ also described the physical effect of the lack of attitudes, and a number of participants from available medication or ability to afford it. both demographics spoke about being overlooked; it felt as if they were being The social domain: participants described a made invisible. Older people expressed E high exposure to death due to age or illness. n m experiencing neglect. There were several Interpersonally Exclusion from social and religious activities io p examples of self-empowerment and help- t • Suffering domestic abuse o was common due to physical impairment a seeking behaviour, showing a strong sense • The power of community attitudes w but also due to others’ attitudes. Some n of value. Bad experiences led a few people i • Traditional methods encouraged e participants in each demographic cited a lack • Fear of extreme persecution/attacks r with disabilities to forge an independent m of young people to help practically, though i for people with albinism m life and find their own value. Families and r these were mainly older people. Many also c e spouses’ attitudes led to breakdowns in s n had one-off positive stories of community i Huge impact relationships for people with disabilities, but t support. Various barriers to accessing human on primary/key there were a few stories revealing a strong D Being made rights were raised, particularly in relation to and positive marital experience, often in spite invisible relationships health systems, but also relating to access to of community opposition. Poverty toilets and privacy once there for those with exacerbated disabilities. Stories of good access to health In society by situation The findings found through the three-tier systems often showed NGOs as instrumental. coding reflect the eight priority areas raised • Partner organisations Individually Access to school might have been available needing more support by peer researchers. However, the coding • Having multiple illnesses to participants with disabilities but learning • Barriers accessing human analysis also highlighted that, although Self- • Emotional difficulties rights and livelihood was limited due to lack of resources and emotional distress was apparent throughout empowerment • High exposure to death • Good access to human training and so participation often ceased. the interviews, interviewees and peer rights and livelihood • Through memories and This had a knock-on effect on work opinions of ‘youth’ researchers did not place emphasis on this opportunities, with work places also creating as viable evidence in the fight for change for their own limitations. older people and people with disabilities in the Tanzanian context.

Stigma

56 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 57 Discussion

The study has revealed a number of issues The government through the Prime Minister’s People with albinism are exposed to stigma With regards to family difficulties and marriage affecting the lives of older people and Office – Regional Administrative and Local all over the world, including the United States breakdowns, as in many other countries persons with disabilities, such as a lack of Government (PMO – RALG) has mandated (Wan, 2003) and Africa (Brocco G., 2015). where parents have an autonomous role over access to education and quality learning, that older people and persons with disabilities In Tanzania, like other countries, killings of their children (Dixon S.V. et al., 2008; Emery access to health services, issues fed back be exempt from fees at any government persons with albinism have created fear R.E., 1999), peer researchers discussed from NGOs, poverty relating to income and facility (United Republic of Tanzania, 2007). among this particular group in society (Brocco how the major source of marriage difficulties dependence, attitudes towards witchcraft and The reality, however, is that older people and G., 2015). Labelling of people with albinism and breakdowns were mainly caused by the albinism, relationship difficulties and marriage persons with disabilities are asked to pay using undesired names such as “dili” has also parents taking on the role of choosing their breakdowns, sexual violence and gender for services such as consultation fees and been reported elsewhere (Brocco G., 2015). children’s spouse. It was also noted how, in issues as well as poor treatment from family. medicines. The implementation of the circular In brief, all these issues have disrupted the Africa, some parents give their daughters to These issues are interlinked: for example, about free medical services will require the lifestyles of people with albinism as some of men for the purpose of accumulating wealth families of children with disabilities have not introduction of legislation on older people as them are now staying at home rather than (Aboderin I., 2004; Mace R., 1998). This was paid serious attention to the education of their a way to enforce the policy. Advocacy going out to work. Furthermore, children with a concern discussed by peer researchers in disabled children. Teachers are not adequately at community and health-system level is albinism have abandoned school, increasing the study areas. It was quoted to be a source trained to teach children with disabilities, and also needed to ensure the implementation dependence among this particular group. of confrontation between the parents and an there are inadequate school infrastructures of the circular so that older people and At national level, peer researchers identified important contribution to marriage breakdown. to support children with disabilities. Contrary persons with disabilities can benefit from that the government must reinforce the law to the free education policy for children with free health services. to stop the persecution and killing of people Peer researchers identified a number of policy disabilities (United Republic of Tanzania, 2014) with albinism. However, limited knowledge recommendations which would need to be they have to pay for school fees like other The issue related to the implementation exists on what is referred to by communities taken on board by community leaders and students without disabilities. Recently, the of the bill on free medical services is not as “albinism and good fortune”. This lack policymakers in order to respect, protect and government abolished fees for all government limited to the health sector but affects other of knowledge complicates the process of fulfil the rights of older people and persons primary and secondary schools, but this sectors as well. Older people and persons inclusion/acceptance of persons with albinism with disabilities in Tanzania. Locally, peer should go along with improvement of quality with disabilities have a number of challenges in their communities (Wan N., 2003; Brocco researchers realised that they had an active of education provided. relating to income and dependence which G., 2015). In Tanzania, people with albinism role to play in raising awareness of older have been reported elsewhere (Hubbard G. have hardly had a platform to tell their stories. people and persons with disabilities. For This study has confirmed previous findings et al., 2003; Yeo R. and Moore K., 2003). This study has attempted to bridge this gap. instance, they decided that they need to speak (see for example Zitha, 2012) on the benefit Lack of employment was also mentioned as a More research is needed so that concrete up during village meetings and actively engage of extended families (whereby a family group challenge for persons with disabilities (Yeo R. facts can be established on the source of with the government to implement the National consists of parents, children and other relatives and Moore K., 2003; Wan N., 2003). Although killings of people with albinism. Disability Policy of 2004 (United Republic of lives together or in close contact, Dictionary the national employment policy mandates the Tanzania, 2004). They decided to take a lead of Unfamiliar Words, 2008) towards caring government and associations of persons with in providing sexual education to communities, for older people and persons with disabilities. disabilities work in collaboration with other as well as educating and empowering families The study has shown that the extended stakeholders to undertake affirmative action of older people and persons with disabilities family system was more beneficial in caring to enhance the employability of persons so that they can receive better support and for persons with disabilities and older people with disabilities (United Republic of Tanzania, provision of services. compared to the modern family system. 2008; United Republic of Tanzania, 2004), Interventions for improving family support to its implementation is far from complete. This older people and persons with disabilities study found that older people are not involved should consider sustaining these initiatives. in different social development issues in their respective localities. Their expertise is not tapped in village government-related activities regardless of the post they had been serving while in government.

58 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 59 Conclusion and to create awareness for parents of children Issues fed back from NGOs Poverty relating to income with disabilities, and the community as a and dependence recommendations whole, because children with disabilities have Peer researchers suggested that there is a This study serves as a reminder that the equal rights to access education. It was also need to improve the care services offered Regarding what should be done to tackle situation for older people and persons with recommended by the peer researchers that by government and NGOs to older people the challenges related to income, peer disabilities is complex, and to serve it best there should be a revision of the primary and persons with disabilities. NGOs should researchers suggested that rather than requires listening carefully to the voices and school curriculum to teach children about also work as a pressure group to facilitate waiting for support, older people and stories of both groups and the NGOs that respecting and caring for older people and these services. For example: NGOs should persons with disabilities should be creative support them. They may be the voices of persons with disabilities in order to have an employ additional professionals who can and establish income-generating activities the marginalised, but when listened to impact on future generations. advise older people and persons with which could improve their livelihoods. properly, have the potential to be the disabilities on various issues related to Moreover, the provision of entrepreneurship voices of the empowered. Access to health services their wellbeing, as currently this is not the skills to older people and persons with case. This is necessitated by the fact that disabilities could help to reinforce this. The most of the services provided by NGOs expertise and experiences of older people Participants’ experience Peer researchers recommended that older are on a voluntary, unpaid basis. Instead, and persons with disabilities should be of ageing and disability people and persons with disabilities should conduct regular check-ups in order to detect NGOs should have their own projects or tapped into development activities within other means to sustain themselves. It was their communities. It was also proposed Participants’ physical, social and attitudinal and prevent diseases such as cancer, which therefore proposed that NGOs initiate that people should get prepared by saving experiences often exacerbated their levels require early diagnosis. They also agreed projects and work together to help care for money where possible, in order to minimise of poverty, which then worsened their to return to their communities and raise older people and persons with disabilities. dependency in their old age. Likewise, peer experiences, in turn further deepening their awareness of this issue. Likewise, social Another proposal by the NGOs group was to researchers requested that the output of poverty. The study has informed policy welfare officers should make frequent visits be transparent about their work to targeted the study be used to educate older people recommendations that push to break this to villages to assess the health status of older groups and the community at large. Likewise, and persons with disabilities about their cycle. It is important to improve physical, people and persons with disabilities in order NGO study participants proposed putting experiences within a socio-cultural context. social and attitudinal experiences, but also to to design feasible and appropriate health care pressure on the government to allocate highlight the right to individual needs and the and management interventions. Persons with enough budgets for the care of older people importance of the emotional implications of disabilities should be given their own window/ Attitudes towards witchcraft and persons with disabilities. meeting them. Policymakers should legislate desk while in hospital. The infrastructure and albinism should be made accessible to persons with the national policy on ageing so that there It was recommended that the SHIVYAWATA is a binding legal framework under the new disabilities, for example the building of health In their group discussion, peer researchers facilities should include the construction of – Tanzania Federation for Disabled People recommended conducting community Ministry of Health, Social Development, (TFDP) organisation should join forces and Gender, Older People and Children. ramps and toilet facilities for persons with awareness about the medical conditions disabilities. Hospital staff should ensure that make sure that they continue a dialogue with associated to albinism, as well as the rights the complaints of older people and persons the government to ensure the availability of of people with albinism. The government Access to education with disabilities are respected. The majority of funding. Likewise, the implementation of the should work with traditional healers and seek and quality learning the peer researchers suggested that health National Disability Policy of 2004 should be the causes of killings of people with albinism. taken into consideration. It was also suggested Individuals who persecute or kill people with With regards to the above-mentioned care providers should be trained in sign that NGOs should not only provide financial albinism should also be prosecuted. bottlenecks on education, participants in the language in order to facilitate communication with their patients. It was also recommended assistance as seed money/capital support to group discussions said that children with persons with disabilities, but also give advice disabilities should be cared for like other that National Health Insurance be compulsory in order to take care of older people and which could help to shape their lives. During children and should not be ignored. Children the discussion, participants of NGOs reminded with disabilities should be treated equally persons with disabilities. Insurance schemes should cover all essential drugs. Advocacy is themselves about working as a network in with other children. The government should helping persons with disabilities. train teachers and provide a supportive also needed to ensure that the government environment and special equipment to implements the circular for free health care to children with disabilities so that they can older people and those with disabilities. study like their peers. There is also a need

60 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 61 Relationship difficulties Sexual violence and gender issues Weaknesses of the study Strength of the study and marriage breakdowns Peer researchers recommended taking a One of the limitations of the study was that This study has informed efforts to provide During the discussion, the majority of lead in providing sexual education to their both groups – older people and persons with services for and improve the lives of older participants proposed the establishment of respective communities for better research disabilities – were literate and this would likely people and persons with disabilities in income-generating activities to empower impact. Measures should be taken to to have biased the group perspective away Tanzania. The body of evidence reported here women with disabilities. Another proposed raise awareness on gender equality and from the greatest poverty. This study was contributes to knowledge gaps which can solution was to provide entrepreneurship discrimination in the communities, including categorised as low-risk; however we were be drawn upon by stakeholders in Tanzania skills to the families of persons with disabilities the need to report physical, verbal and sexual not necessarily made aware whether any of and beyond. In terms of study design, the in order to strengthen household economies. abuse to the police. This should provide the participants had themselves experienced research has contributed to bringing together This includes households of older people lessons to those with bad intentions or sexual abuse. Issues surrounding sexual CBPR and disability. Rich data has been and persons with disabilities with low who mistreat persons with disabilities. abuse were extremely sensitive and it is very collected and there has been clear ownership socio-economic status. Likewise, another This study has also shown that some people likely that some stories were not shared, of findings by the peer researchers. The suggestion was the creation of community take advantage of persons with disabilities especially those that might have caused approaches used will help to build strong awareness strategies to sensitise people on to benefit themselves. By having legislative psychological distress. Similarly, some of and inclusive policies which will contribute to issues related to persons with disabilities, measures in place, these behaviours will the participants with albinism may have held inform implementation of the 2030 Agenda. including their experiences, challenges and be reduced. back on sharing their stories in order to avoid The study has also contributed to building needs. In addition to the above, community emotional distress. Finally, study planning had ways of engaging with CBPR in the context health workers who normally visit households Poor treatment from family not placed emphasis on aftercare, such as of social inclusion and disability, through its to assist families should be empowered to linking participants with local practitioners for strengths and weaknesses. Accommodation continue visiting the households. There was Families taking care of older people and support following the study. and transport relating to participants’ needs also a need to counsel men so that they persons with disabilities should be sensitised were well considered. can take their responsibilities of caring for to the needs of these marginalised groups. For future learning, it would have been their families and children with disabilities The government should provide counselling better to incorporate the three-tier coding The peer researchers identified and proposed seriously. Likewise, it was also recommended to parents of children with disabilities on how into the analysis workshops, so that peer policy recommendations which should be that parents should not interfere with the to provide better support and guidance. In researchers were part of that stage rather taken on board by community leaders and marriages of their children with disabilities, addition, the Ministry of Health and Social than validating its findings. There was also policymakers in order to respect, protect and for example choosing their spouses. Lastly, Welfare office should create awareness some uncertainty with roles and relationships fulfil the rights older people and persons with village chairpersons should have a list of among village leaders in how to educate which improved as the group fully understood disabilities in Tanzania. older people and persons with disabilities in communities on living with marginalised the methodology. their respective localities in order to facilitate people. Because of their experience in this Another weakness to recognise is not smooth coordination and support for study, peer researchers felt they also had a always being explicit about factors affecting these marginalised groups. However, other duty to raise awareness about both disability older people more or less than persons participants in the NGOs group reported and ageing; and advocate for individual’s right with disabilities. The study did not explore that it is the responsibility of the NGOs to to dignity, inclusion and equality amongst in depth the intersections between older have a list of older people and persons government, village leaders and families. people and persons with disabilities, which with disabilities. In addition to the above, the older people a future study could address. We would should ensure that their organisations protect also like to acknowledge the limitation of the their interests. small sample in providing a valid basis for concrete policy recommendations. Finally, it would have improved the study to explicitly ask participants if they experienced any psycho-social or intellectual disabilities. The transcripts implied that these might well be present but there is no evidence collected relating to this.

62 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 63 © ADD International

References

Aboderin, I. 2004. Decline in material family support for older people Mesaki, S. 2009. Witchcraft and the law in Tanzania. International in urban Ghana, Africa: Understanding processes and causes Journal of Sociology and Anthropology, 1, 132-138. of change. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 59, S128-S137. NBS 2008. Tanzania Disability Survey Report.

Aldersey, H.M. & Turnbull, H.R. 2011. The United Republic NBS 2013. 2012 Population and Housing Census. Population of Tanzania's national policy on disability: A policy analysis. Distribution by Administrative Areas. National Bureau of Statistics Journal of Disability Policy Studies. Ministry of Finance Dar es Salaam.

Association, W. M. 2000. Declaration of Helsinki. Recommendations Ngallaba, S. E., Makerere, D. J., Nyanza, E. C., Kapesa, A. & guiding physicians in biomedical research involving human subjects. Marwa, K. 2016. Common Preventable Health and Social Problems 52nd General Assembly, Edinburgh, Scotland, October 2000. Encountered by Elderly in Shinyanga Region in the Northern Part of Tanzania. Open Journal of Preventive Medicine, 6, 115. Banks, S. & Manners, P. 2012. Community-based participatory research: a guide to ethical principles and practice. Centre for Regional Commissioner's Office Lindi 2016. Nachingwea district Social Justice and Community Action, Durham University, and Council: Welcom to Lindi region (available at lindi.go.tz/lindi/ National Co-ordinating Centre for Public Engagement. accessed on 17 August 2016). Online at www.publicengagement.ac.uk/sites/default/files/ publication/cbpr_ethics_guide_web_november_2012.pdf Regional Commissioner's Office, Pwani 2011/16. www.pwani.go.tz/ (accessed 9 May 2015). kibaha/index.php (Accessed on 17th February 2015).

Brocco, G. 2015. Labeling albinism: language and discourse Sebgiya B 2001. Increasing Access to Social Services for older surrounding people with albinism in Tanzania. Disability & Society, People in Magu District: Recommendations for the Sukumaland Older 30, 1143-1157. Women’s Programme. Helpage International, Dar es salaam-Tanzania.

Burns, D., & Oswald, K. 2014. “We can also make a change” UN General Assembly 2008. UN Convention on the Rights of People Piloting participatory research with persons with disabilities and with Disability, New York, UNGA. older people in Bangladesh. By the “Voices of the Marginalised” consortium (Sightsavers, HelpAge International, ADD International, UNESA 2011. World Population Prospects: The 2010 Revision, New and Alzheimer’s Disease International). Institute of Development York: UNESA. Studies IDS-UK. UNFPA AND HelpAge International 2012. Ageing in the Twenty-First CSJCA & NCCPE 2012. Centre for Social Justice and Community Century: A Celebration and A Challenge, United Nations Population Action (CSJCA) and National Co-ordinating Centre for Public Fund (UNFPA), New York, and HelpAge International, London. Engagement (NCCPE). Community-based participatory research – United Nations 2013. Department of Economic and Social Affairs, a guide to ethical principles and practice. Bristol: NCCPE. Population Division (2013). World Population Ageing 2013. ST/ESA/ Dictionary of Unfamiliar Words 2008. For Dictionary of Unfamiliar SER.A/348. Words: extended family. (n.d.) Dictionary of Unfamiliar Words Global recommendations United Republic of Tanzania 2003. The National Policy on the by Diagram Group. Retrieved March 11 2016 from www. Ageing. The Ministry of Labor, Youth Development and Sports, thefreedictionary.com/extended+family. Dar es Salaam. Dixon, S. V., Graber, J. A. & Brooks-Gunn, J. 2008. The roles of Policymakers must: United Republic of Tanzania 2004. National Policy on Disability. respect for parental authority and parenting practices in parent-child conflict among African American, Latino, and European American United Republic of Tanzania 2007. Ministry of Health (MOH). • Ratify, implement and monitor the UN • Increase funding and improve data families. Journal of Family Psychology, 22, 1. Convention on the Rights of Persons with collection and analysis mechanisms United Republic of Tanzania 2008. National Employment Policy. Emery, R. E. 1999. Marriage, divorce, and children's adjustment, Disabilities (UNCRPD) and support the on both disability and ageing to Sage Publications. United Republic of Tanzania 2014. National Education and Training Policy. elaboration of a UN Convention on the increase knowledge. Freeman, M. C., Kolappa, K., De Almeida, J. M. C., Kleinman, A., Rights of Older People (UNCROP). Makhashvili, N., Phakathi, S., Saraceno, B. & Thornicroft, G. 2015. Vallotton, M. B. 2010. Council for international organizations • Raise awareness about the experiences of Convention on the Rights of Persons with Disabilities. of medical sciences perspectives: protecting persons through international ethics guidelines. International Journal of Integrated Greenwood, M., Fakih, B., Steff, M., Bechange, S., & Mwifadhi, • Promote the full and equal participation of older people and persons with disabilities Care, 10. older people and persons with disabilities in to reduce stigma and discrimination. M. 2016 Hear my voice: a community-based participatory study gathering the lived experiences of people with disabilities and older Wan, N. 2003. 'Orange in a World of Apples': The voices of albinism. policy making at all levels, with systematic people in Tanzania. Knowledge Management for Development, Vol 12. Disability & Society, 18, 277-296. • Ensure SDGs-compliant development to processes for meaningful engagement. Hubbard, G., Downs, M. G. & Tester, S. 2003. Including older people World Health Organisation 2011. World Report on Disability, provide public services that are inclusive to with dementia in research: challenges and strategies. Aging & Mental Geneva: WHO. older people and persons with disabilities. Health, 7, 351-362. Yeo, R. & Moore, K. 2003. Including disabled people in poverty Mace, R. 1998. The co-evolution of human fertility and wealth reduction work:“Nothing about us, without us”. World Development, inheritance strategies. Philosophical Transactions of the Royal 31, 571-590. Society of London B: Biological Sciences, 353, 389-397. Zitha, M. 2012. Role of Families in Social and Economic Mboghoina, T., and Osberg L,. 2010. Social Protection of the Elderly Empowerment of Individuals, Human Sciences Research Council in Tanzania: Current Status and Future Possibilities Special Paper of South Africa, United Nations, New York, 10-12 September 10/5 Dar es Salaam, REPOA.

64 Hear Hear my my voice: voice: old old age age and and disability disability are is notnot aa cursecurse www.sightsavers.org/voices 65 Annexes

Annexe 1: Interview guides for NGO peer researchers Annexe 2: Interview guides for peer researchers (older people and persons with disabilities) Story prompts for Follow-up questions NGO peer researchers: Story prompts for peer researchers: Follow-up questions Clarifying questions – to make things clear 1. Tell me a story about how economic, eg Who? What? Where? When? 1. Tell me a story about a challenge you have You can ask them follow-up questions to get social or political changes in Tanzania faced as a person with disabilities or an more information, eg who else was there, have impacted/influenced a person with Probing questions – to get more information older person. when did that happen, what happened next, disabilities or an older person you know. eg What happened next? Who else was where did that happen? 2. Tell me a story about something that Tell me a story about a person with involved? Is this typical or unusual? 2. happened to you because you are a You can also ask them why they told you this disabilities or an older person who is person with disabilities or an older person. story. Is it typical or unusual? Does it happen unable to live the life you think they Analysis questions – to understand why. often or to other people? would want to. eg Why did you tell me this story? NB: If they talk about the incident that caused Why do you think this happened? their disability, remind them they need to tell you 3. Tell me a story about a person about something that has happened because of Analysing the stories What lessons does this story give you? or group of people who you have their disability. been unable to support. After someone has told you a story, Documentation think about who else you could speak to. NB: If they talk in general terms, remind them they Are there other people in the story who need to tell you a story about a real person. Audio record the stories and write down could tell you more? everything exactly as the person says it. Afterwards, listen to the audio recording and Documentation type up the stories onto your computer or laptop. Transfer the audio recording to your You will have a volunteer who will audio computer or laptop. record the stories and write down everything exactly as the person says it. But you should Email a copy of their story to the team leader also keep notes as well if you can. to make sure they are happy with the write up.

Once a month, email your stories (written and audio) to your focal point in Ifakara Health Institute, Sightsavers, HelpAge International or ADD International.

66 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 67 Annexe 3: Information sheet

Information Sheet

International

Participatory research with persons with Why have I been selected to take part? We might like to record the discussion/ Are there any risks to taking part? disabilities and older people in Tanzania interview, to remind us later of exactly what The project is taking place in your district, and was said. As we will record the interview, No, there are not any risks in participating [Greeting] My name is ...... we are interviewing people with disabilities, the tapes will be kept in a secure place, and in this survey. However, this will take some You are being invited to take part in this older people and people working with Non- after the information has been extracted the of your time to tell your experiences. No, research project. Before you decide, I will Governmental Organisations (NGOs), as we recordings will be destroyed. But if you are payment is not required to participate in this explain the project to you and what we will ask also want to understand the experiences of not agreeable to this we will just make written study. You may choose not to answer some you to do. You are also free to ask questions. NGOs working with older people and people notes. We might want to quote what you say, of the questions we will ask you if you don’t This research is being done by the Ministry of with disabilities in your area. You have been but without linking your name to the quote. wish to do so. Health and Social welfare (MoHSW), Ifakara selected to participate in this research as you Health Institute (IHI), Sightsavers, HelpAge are one of the above I mentioned above. Are there any direct benefits to me? Will I be compensated for my time? International and ADD International. What will happen in I agree to take part? No, there are no direct benefits to you taking No, we envisage that the discussion will What is the project about? part in this study. However, the outcomes take a maximum of one hour. No payment If you agree to take part, we will ask you to of this survey will be used by MoHSW, IHI, or compensation is provided for study Globally, persons with disabilities and older tell us your experiences as NGO dealing with Sightsavers, HelpAge International and ADD participants. Your participation is free people face widespread exclusion. They people with disabilities or older persons. The International in Tanzania and internationally as of charge. are routinely left out from participating in purpose is to discuss a range of topics of this part of their advocacy to highlight the reality If you have any question we will be social, economic and political activities and marginalised group. During our interview, we of the lives of older people and persons living happy to answer it. processes, including national and international will take your picture if you allow us to. The with disabilities. The findings will be written development policy, practice and research. picture will only be used for the purpose of up in a report, and also for publication in For further information about this study Exclusion reinforces the disproportionately high the report of the research findings. national and international medical journals, please contact Bakar Fakih working with number of people living with disabilities and however, your name will not appear to any All the information you give us will be kept Ifakara Health Institute. If you would require older people among the poorest of the poor. of these documents. completely private, so no-one will know what information from the ethical committee you may contact the secretary (Beverly We are currently carrying out a study so as to you say with the exception of the people in Your participation to this research is voluntary. Msambichaka) of the Ifakara Health Institute provide evidence on the specific nature and this research. Your name will not appear in You are free to participate or not to without Review Board: 0659165230. experiences of older people and persons with any documents or reports. The discussions punishment or any complaint. Though, we disabilities from their own perspectives in rural will take place in a quiet, private location. will be happy if you agree to participate in and urban setting of Kibaha and Nachingwea. this survey. If you decide not to take part To do this we will be talking to a wide range of in this study, this will not affect the service people living with disabilities and older people. you receive from the health care facilities or anywhere else.

68 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 69 Are there any direct benefits to me? Annexe 4: Consent form Do you agree to participate? Yes No No, there are no direct benefits to you taking Consent form I have understood the content of this survey, part in this study. However, the outcomes and what is needed from me, and the of this survey will be used by MoHSW, IHI, consequences of my participation. Sightsavers, HelpAge International and ADD International in Tanzania and internationally as My questions regarding this International part of their advocacy to highlight the reality survey have been answered by of the lives of older people and persons living with disabilities. The findings will be written up Participatory research with persons with Why have I been selected to take part? in a report, and also for publication in medical (Peer Researcher’s Name). disabilities and older people in Tanzania journals, however, your name will not appear The project is taking place in your district, and to any of these documents. I understand that I can withdraw from [Greeting] My name is ...... we are interviewing people with disabilities, participating in this survey any time without You are being invited to take part in this older people and people working with NGOs, Your participation to this research is voluntary. giving a reason, without affecting my eligibility research project. Before you decide, I will as we also want to understand the experiences You are free to participate or not to without for medication and to the authority of this explain the project to you and what we will ask of NGOs working with older people and punishment or any complaint. Though, we survey. I agree to participate. you to do. You are also free to ask questions. persons with disabilities in your area. You have will be happy if you agree to participate in this survey. If you decide not to take part in This research is being done by the Ministry of been selected to participate in this research as Person with Disabilities/Older person Health and Social welfare (MoHSW), Ifakara you are one of the above I mentioned. this study, this will not affect the service you Health Institute (IHI), Sightsavers, HelpAge receive from the health care facilities. Name International and ADD International. What will happen in I agree to take part? Are there any risks to taking part? Age What is the project about? If you agree to take part, we will ask you to tell a story about your experiences as NGO working No, there are not any risks in participating Location Globally, people with disabilities and older with older people and people with disabilities. in this survey. However, this will take some of your time to tell your stories to us. No, people face widespread exclusion. They The purpose is to discuss a range of topics Job are routinely left out from participating in about this marginalised group. We may also payment is not required to participate in this social, economic and political activities and take your picture during interview, if you allow study. You may choose not to answer some Type of disability processes, including international development us to. The picture will only be used for the of the questions we will ask you if you don’t Mobile number policy, practice and research. Exclusion purpose of the report of the research findings. wish to do so. reinforces the disproportionately high number Will I be compensated for my time? Signature of people living with disabilities and older All the information you give us will be kept (Thumb print) people among the poorest of the poor. completely private, so no-one will know what you say with the exception of the people in No, we envisage that the discussion will take a maximum of one hour. No We are currently carrying out a study so as this research. Your name will not appear in payment or compensation is provided Witness to provide evidence on the specific nature any documents or reports. The discussions for study participants. Your participation and experiences of older people and persons will take place in a quiet, private location. is free of charge. Name with disabilities from their own perspectives We might like to record the discussion/ in rural and urban setting of Kibaha and Signature interview, to remind us later of exactly what If you have any question we will be Nachingwea. To do this we will be talking to (Thumb print) was said. As we will record the interview, happy to answer it. a wide range of people living with disabilities the tapes will be kept in a secure place, and and elderly people. For further information about this study please after the information has been extracted the contact the secretary (Beverly Msambichaka) recordings will be destroyed. But if you are Date of the Ifakara Health Institute Review Board: not agreeable to this we will just make written 0659165230. notes. We might want to quote what you say, but without linking your name to the quote.

70 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 71 Annexe 5: Report validation workshop Who’s behind it? What is a validation workshop? What was the aim of report validation workshops? This was an activity planned to verify if Voices of the Marginalised Ifakara Health Institute (IHI) the compiled information is what was said The aim of this validation workshop was to Voices of the Marginalised is a project IHI is an autonomous, not-for-profit Tanzanian during the analysis workshop held on validate the report the research team have bringing the perspectives of those who live health research organisation registered in 28th September to 8th October, 2015 at compiled from the peer researchers’ analysis. in poverty or who are highly marginalised, Tanzania. The Ifakara Health Institute has Bagamoyo. The report was validated when it It was meant to ask the peer researchers including those with disabilities and older an excellent track record for world-class was complete in its first draft. who participated in the generating of the people, into global and national policymaking. multidisciplinary research to inform public information "is this what you said during the It is a collaboration between Sightsavers, health policy and action. IHI has over 50 analysis workshop?”. When and where did the HelpAge International, and ADD International years’ experience in several programme validation workshop took place? areas including demand-driven research; The report findings were shared with the with the participation of Ifakara Health Institute to lead the research study in data analysis and use; public health; policy The validation workshop meetings took place peer researchers for them to read prior to Tanzania as well as the Tanzanian Ministry of analysis and development; monitoring and on 24th November 2015 in Kibaha, 25th the validation meeting. The report was either evaluation and knowledge generation and Health, Community Development, Gender, November 2015 in Dar es Salaam and 4th shared through emails for most of the NGOs dissemination. IHI’s approach focuses on the Elderly and Children and the Ministry for December 2015 in Nachingwea. With the peer researchers or through hard copies to effective engagement of key stakeholders Labour, Employment, Youth and People with exception of the NGO validation workshop the community ones. throughout the entire research process to Disability. The study was initially conducted in which was held in the IHI office conference policy ensure uptake. To validate and comprehend the analysis Bangladesh and then in Tanzania. room, the rest of the two workshops were which was done in the UK, the peer www.ihi.or.tz held in venues which were accessible researchers were asked if the findings The ‘ways forward’ suggested by the and friendly to the peer researchers in the gathered from the question: “How do peer researchers will be used as a basis respective districts. participants experience ageing and/or to develop further policy recommendations ADD International disability?” were in line with what they found. for advocacy purposes. Who participated in the ADD International fights for independence, equality and opportunities for persons with validation workshops? What happened during the disabilities living in poverty. We work in Africa validation meeting? Sightsavers The validation workshops were attended by and Asia with persons with disabilities’ groups the peer researchers from their respective in order to achieve positive and lasting change The research team presented the report to Across the world, persons with disabilities localities i.e. Nachingwea and Kibaha (for in their lives, by giving them the tools to make the peer researchers. The presentation was are more likely to experience poverty community peer researchers) and Dar es change happen and campaign for their rights. based on the overview of the study, what and social discrimination. Sightsavers is Salaam for NGOs peer researchers. The was generated from the main priority areas committed to eliminating avoidable blindness www.add.org.uk meetings were coordinated by the research and the UK analysis. This was followed and supporting persons with disabilities as team from Ifakara Health Institute. Sightsavers by discussion from the peer researchers. equal members of society. UK and Sightsavers Tanzania who attended During the validation workshop, the peer www.sightsavers.org Tanzanian Ministry of Health, two of these meetings which were held in researchers discussed the report in a group. Dar es Salaam and Kibaha. There was a Community Development, Peer researchers discussed and helped to note taker in the meetings to capture what provide more quotes and examples from Gender, Elderly and Children were said and discussed. A sign language HelpAge International the participants’ stories. The sessions were (MOHCDGEC) interpreter was available in Kibaha and later followed by the feedback. The peer HelpAge International helps older people Nachingwea. researchers accepted that the UK analysis claim their rights, challenge discrimination conformed to what the stories give out and overcome poverty, so that they can lead Tanzanian Ministry for in comprehension. dignified, secure, active and healthy lives. Labour, Employment, Youth www.helpage.org and People with Disabilities

72 Hear my voice: old age and disability are not a curse www.sightsavers.org/voices 73 Further information

To find out more about the Voices of the Marginalised project, and for information about our previous study in Bangladesh, please visit www.sightsavers.org/voices or contact [email protected]

Please note: The images used in this document do not show the participants or interviewees in the Voices of the Marginalised project. We wish to protect their identities.

Title of the full report: The peer researchers were asked to find the title of the report. Every participant wrote a suggested title in a piece of paper. The proposed titles were then written on the board and read aloud for inclusion purposes. Participants voted for the best title. The following title was then chosen as best to represent the findings: “Old age and disability are not a curse.”