Hear my voice: Lived experiences of older people and people with disabilities in Tanzania

ICED19th February 2016

Marion Steff & Margo Greenwood

The consortium

Purpose

To gather the voices of persons with disabilities and older people, and provide qualitative input to inform Agenda 2030 and the Sustainable Development Goals.

Methodology

Community-based participatory research (CBPR). It involves:

– Committing to sharing power and resources– Working towards beneficial outcomes for all participants – Equitably involving community members, organisational representatives and researchers– Sharing expertise, decision-making and ownership– Bringing unique strengths from all

Ethical principles of CBPR

• Mutual respect• Personal integrity• Equality and inclusion• Democratic participation• Active learning• Making a difference• Collective action

G

How did participants experience old age and/or disability?

Passages from stories (1/4)

“…there was a time when I experienced some coughing and I reported it to the village leaders. I was given a letter to get free treatment at the hospital. I used this service a little while and they took away the letter and told me that I was not entitled to get free treatment in the type of illness I had. I must now have money to get treatment. If I don’t, I just stay at home and buy some Panadol.” Older person, 70, Nachingwea

Passages from stories (2/4)

“(…) I have problems related to health services. If I become sick, my relatives do not take me to the hospital. I usually go alone but I have been experiencing a lot of difficulties because I don’t know how to express myself because health care providers do not understand sign language.” Person with a hearing disability, 32, Kibaha district

Passages from stories (3/4)

“There was a person with a visual impairment who was living with his relatives in Mjimwema Kigamboni. He didn’t attend school. (…) he was living in a small room. There was a hole inside the room which he used as a toilet; he was given food in the same room. As a NGO, we got the information and went to see him. He was not even permitted to go outside and wash his body. He was sleeping on the ground and never changed his clothes. We met his relatives whom he was living with. Then when we reported this story to the public in 2008, our project sponsor wanted us to visit the house again with the media but when we went to the household, his family said he has been taken to his relatives in Tanga” Participant from NGO, 48, Dar es Salaam

Passages from stories (4/4)

Talking about witchcraft and albinism: “The way I see it, politic is the source of killing of people with albinism. The reason for my argument is that whenever there is an election, the killing of people with albinism increases. This year, the community raised its voice and it stopped for a while.” Participant from a NGO, Dar es Salaam

Eight identified priorities

• Access to education• Health services• NGO issues• Poverty, income & dependence• Witchcraft & albinism mistreatment • Family difficulties & marriage breakup• Sexual violence & gender issues • Poor treatment from family & taking advantage of people with disabilities

National recommendations (1/2)

The peer researchers should: • Take a lead in providing sexual education to respective

communities;• Educate and empower families of older people and

people with disabilities to provide better support;• Raise awareness among village leaders and attend

villages meeting; • Engage with the government to implement the National

Disability Policy of 2004.

National recommendations (2/2)

The Tanzanian government should: • Work with traditional healers and seek for the causes of

people with albinism’ killings; • Provide counselling for parents of children with

disabilities; • Legislate the national policy on ageing so that there is a

binding legal framework under the new Ministry of Health, Social Development, Gender, Older People and Children.

Peer researchers team

Thank you! Questions? Web page: www.sightsavers.org/voices

Contact details: msteff@sightsavers.org mgreenwood@sightsavers.org

Twitter: @mllemarionamtl @MargoGreenwood @Sightsavers_Pol