ICED presentation by Marion Steff and Margo Greenwood

1. Hear my voice: Lived experiences of older people and
people with disabilities in Tanzania
ICED
19th February 2016
Marion Steff & Margo Greenwood

2. The consortium

3. 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.

4. 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

5. Ethical principles of CBPR
• Mutual respect
• Personal integrity
• Equality and inclusion
• Democratic participation
• Active learning
• Making a difference
• Collective action

6. G
How did
participants
experience
old age
and/or
disability?

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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.

13. 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.

14. Peer researchers team

15. Thank you! Questions?
Web page: www.sightsavers.org/voices
Contact details: msteff@sightsavers.org
mgreenwood@sightsavers.org
Twitter: @mllemarionamtl
@MargoGreenwood
@Sightsavers_Pol