From 2012 to 2016, Sightsavers, HelpAge International and ADD International conducted a research study, Voices of the Marginalised, to share the experiences and perspectives of people with disabilities and older people living in developing countries. The aim was to share their experiences in terms of social, political and economic inclusion in order to influence national and global policymakers, while strengthening efforts to provide accessible quality services at a local level. The study was first conducted in Bangladesh and then in Tanzania, with the respective support of two research institutes: the Institute of Development Studies (IDS) in the UK and Ifakara Health Institute in Tanzania.
There is a growing recognition of inequalities which arise from marginalisation, where those in excluded situations rarely have the opportunity for their voices to be heard. This invisibility is exacerbated by a lack of relevant data. Voices of the Marginalised provides a real opportunity to build a body of qualitative data so governments and development actors understand better the barriers confronting people with disabilities and older people.
Bringing partners together (bridging research and policy, along with tangible recommendations) is essential to improve the quality of life and participation of the most excluded people. This research comes at a time when governments are reevaluating their national priorities as well as their spending and accountability mechanisms in the light of the 2030 Agenda and the Sustainable Development Goals (SDGs).
The methodology used for this project was a community-based participatory approach, aiming to involve equitably community members, organisational representatives and external researchers in order to share resources and exchange knowledge. We brought together people with disabilities and older people who actively took part in the project by becoming researchers, being trained to collect and analyse stories from peers in rural and urban areas. Staff from local organisations were also trained as researchers to gather stories from colleagues working with people with disabilities and older people.
The stories shared highlight not only the stigma and discrimination people with disabilities and older people are often faced with, but also their challenges in claiming their rights, finding employment, and accessing health care and other public services.
The research study was conducted in two sites: Bhashantek, an urban slum in the capital of Dhaka and Cox’s Bazar, a rural area in southeast Bangladesh. Eleven community peer researchers collected 70 stories while seven NGO peer researchers spoke with staff from more than 40 organisations. Peer researchers included people with disabilities, older people and representatives of local NGOs working on disability or aging. They all analysed the stories collected in a workshop and identified 13 emerging issues that particularly affect people with disabilities and older people in Bangladesh.
There was significant overlap in the 13 issues identified as critical to both groups, and issues were also very interrelated – for example, a lack of livelihood impacted someone’s ability to access health care. The stories gathered illustrate how transformative, for instance, an income can be in terms of independence, status and self-esteem. Poor access to services, mainly as a result of poor infrastructure, also has a huge impact, and so does the everyday discrimination and exclusion faced by people with disabilities and older people.
I am living by borrowing from other people and relatives here and there. I am just surviving. I only get the disability allowance.
– Imran, aged approximately 45
People with disabilities and older people are commonly viewed as a burden on the household. Often they are abandoned and many move to urban areas to beg.
Because she was disabled and poor, she couldn’t study… Generally in our country, girls are neglected. If they are disabled there is no end to their suffering.
The twin effects of discrimination and poverty mean older people and those with disabilities are frequently unable to access public services, in particular health care and education. Girls with disabilities find it particularly difficult to access education and when they do, they can face the additional problem of bullying and discrimination.
Children used to tease and beat my granddaughter. She couldn’t concentrate on the classwork for long.
– Grandmother of 13-year-old Abida
The research study in Tanzania was conducted in two sites: the rural settings of Nachingwea and in Kibaha Urban Municipal Council. Twenty-nine peer researchers collected 106 stories from people with disabilities, older people and staff working in local NGOs on disability (physical, visual, hearing, intellectual, albinism and mental health) or ageing.
The peer researchers were asked to identify the main issues faced by persons with disabilities and older people in all stories, why they thought they happened and how they were connected. They analysed these stories in a workshop and identified eight emerging issues that particularly affect people with disabilities and older people in Tanzania. They are:
Analysis was also triangulated by Sightsavers researchers coding 36 interviews that examined all the experiences without assigning importance to them, asking the research question: How did participants experience ageing and disability?
The stories were of participants experiencing ageing, disability, or a combination of both, on an individual, interpersonal (the interaction with friends, family and community) and societal level.
When I was in primary school, I would tell the teacher that I could not see. I would ask: “Can you please read for me?” But the teacher would say, “Why do you come to school then if you cannot see?”
– 25-year-old participant
We receive different people seeking assistance. Some people are OK with the advice we provide which can change their lifestyle, but others are in need of equipment and other different services which we cannot afford.
– Participant from an NGO
I am old, but when I look ahead of me, I can’t sleep at night. I see I will face difficulties in my old age because I have no savings in the bank and my pension is small.
– 61-year-old participant
Whenever there is an election, the killing of people with albinism increases.
– Participant from an NGO
People with albinism have been killed and their limbs amputated as some people believe this can bring about good fortune, especially during elections as a means of bringing good luck to politicians.
Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania
Full report (2016)
Available soon: Summary in Swahili
Voices of the Marginalised: Innovative and participatory research for better and inclusive policymaking
January policy update (2016)
Available soon: Hear my voice: a community-based participatory study gathering the lived experiences of people with disabilities and older people in Tanzania (from Knowledge for Disability Inclusive Development Journal)
Tanzania: how stigma takes toll on elderly and disabled (12 October 2016; news story from www.allafrica.com)
Response to the Questionnaire of the Independent Expert on the enjoyment of all human rights by older persons on best practices in the implementation of existing law related to the promotion and protection of the rights of older persons (December 2015; from OHCHR – scroll down to civil society responses)
Action research process with older people and people with disabilities in Bangladesh (16 June 2014; from Knowledge from the Margins – An anthology from a global network on participatory practice and policy influence)
Old age, disability and mental health: data issues for a post-2015 framework (May 2013; ODI background note)
Integrating older age, disability and mental health issues into household surveys: progress and outstanding gaps (May 2013; ODI background note)
Voices of the Marginalised and Post-2015 Development Goals (21 January 2013; written evidence submitted to the International Development Committee Inquiry on Post-2015 Development Goals)
Disability in the Post-2015 Framework (November 2012; paper accepted under the ‘Addressing inequalities’ global thematic consultation)
Inequalities relating to health and the life course: disability, mental illness and older age (November 2012; paper accepted under the ‘Addressing inequalities’ global thematic consultation)
Voices of the Marginalised: persons with disabilities, older people, people with mental health issues (October 2012; paper accepted under the ‘Addressing inequalities’ global thematic consultation)
Poster available in December – Hear my voice: Community-based participatory research and advocacy to raise up often unheard voices in Tanzania and promote public value and health. Dr. Margo Greenwood; Dr. Mrisho Mwifadhi, Bakar Fakih, Dr. Marion Steff and Stevens Bechange (Fourth Global Symposium on Health Systems Research 2016)
Hear my Voice report launch: a huge success! by Gosbert Katunzi with James Hallwood (19 October 2016)
Tanzania ‘Voices’ launch: not long to go! by Marion Steff (29 September 2016)
Violence against women with disabilities by Marion Steff and Margo Greenwood (22 March 2016)
Participatory research can help leave no one behind by Marion Steff (11 February 2016)
We can also make change by Fred Smith (12 November 2013)
Voices of the marginalised by Marion Steff (17 April 2013)
ADD International: Hard realities for disabled people in Tanzania – a new research (10 October 2016)
UNSDN: The Key to Agenda 2030? The Inclusion of People, All People! by Marion Steff (29 February 2016)
ADD International: Participatory research can help leave no one behind: an innovative approach by Polly Meeks and Marion Steff (9 February 2016)
HelpAge International: Voices of the marginalised: Older people and people with disabilities heard by policymakers by Shegufta Sharmin (17 August 2015)
UNSDN: Speaking for ourselves: how innovative research is breaking barriers by Marion Steff (22 June 2015)
HelpAge International: Voices of the marginalised in Bangladesh by Barbara Dockalova (9 April 2013)
HelpAge International: Post-2015: Capturing the voices of the marginalised by Anders Hylander (21 August 2012)
Tanzanian Government: Disability and old age are not a curse (13 October 2016 – in Swahili)
Work with us (September 2013): Voices of the Marginalised consortium was part of the Participate Initiative which organised an exhibition of research findings. The event focused on the experiences of marginalised people and those living in greatest poverty, and their visions for change. The exhibition was displayed on the streets of New York and at the United Nations headquarters, UNICEF and The NYU Gallantin School of Individualised Study.