Inequalities and the Inequalities and the Voices of the Voices of the

Marginalised studyMarginalised study

Marion Steff, PhD - SightsaversMarion Steff, PhD - SightsaversODI - 18th April 2013 ODI - 18th April 2013

The The contextcontext

Three organisations: Three organisations:

Two vulnerable groups not included in the MDGsTwo vulnerable groups not included in the MDGs•Older people Older people •People with disabilities People with disabilities

OverviewOverview

Inequalities Inequalities •Millennium Declaration Millennium Declaration •Lost in the MDGsLost in the MDGs•Obligation of Member States Obligation of Member States to address inequalities to address inequalities •Key driver for the post 2015 Key driver for the post 2015 development frameworkdevelopment framework•Persistent global challenge Persistent global challenge

Scale of the problem (1/3)Scale of the problem (1/3)

Ageing: Ageing: Currently, more people are over the age Currently, more people are over the age of 60 than children under 5. By 2030, people of 60 than children under 5. By 2030, people aged over 60 will outnumber children under the aged over 60 will outnumber children under the age of 10. age of 10.

Disability: Disability: Between 15 and 20% of the Between 15 and 20% of the population worldwide live with some form of population worldwide live with some form of disability. 80% of people with disabilities live in disability. 80% of people with disabilities live in developing countries and face a greater risk of developing countries and face a greater risk of living in poverty. living in poverty.

Scale of the problem (2/3)Scale of the problem (2/3)

Ageing & disability: Ageing & disability: More than 46% of people More than 46% of people aged 60 years and over live with disabilities. aged 60 years and over live with disabilities. Worldwide more than 250 million older people Worldwide more than 250 million older people experience moderate to severe disability.experience moderate to severe disability.

Dementia: Dementia: The number of people living with The number of people living with dementia worldwide is currently estimated at dementia worldwide is currently estimated at 35.6 million, with a twofold rise estimated by 35.6 million, with a twofold rise estimated by 2030 and numbers more than tripling by 2050. 2030 and numbers more than tripling by 2050.

Scale of the problem (3/3)Scale of the problem (3/3)

Limited dataLimited data

No systematic data No systematic data gatheringgathering

No disaggregated No disaggregated datadata

No consultation with older people and people No consultation with older people and people with disabilitieswith disabilities

The Voices of the Marginalised studyThe Voices of the Marginalised study

Supportive organisationsSupportive organisations

• Alzheimer’s Disease Alzheimer’s Disease International (ADI)International (ADI)

• Basic NeedsBasic Needs

• The Secretariat of the The Secretariat of the African Decade for African Decade for Persons with Persons with DisabilitiesDisabilities

Our partners (1/2): ODIOur partners (1/2): ODI

• Interested by the issue of inequalityInterested by the issue of inequality

• Work on a paper relative to:Work on a paper relative to:• The lack of dataThe lack of data• The need for better data collectionThe need for better data collection• The need to adjust key international survey The need to adjust key international survey instrumentsinstruments

• Paper by E. Samman & L. Rodriguez-Takeuchi (2013)Paper by E. Samman & L. Rodriguez-Takeuchi (2013)

Our partners (2/2): IDSOur partners (2/2): IDS

• Interested by the issues faced by older people Interested by the issues faced by older people and people with disabilitiesand people with disabilities

• Specialised in participatory action researchSpecialised in participatory action research

• Lead researchers: Katy Oswald & Danny BurnsLead researchers: Katy Oswald & Danny Burns

to gather the voices of people with disabilities, to gather the voices of people with disabilities, older people, and people with mental health older people, and people with mental health issues and provide qualitative input to inform issues and provide qualitative input to inform the planning of a post-2015 framework. the planning of a post-2015 framework.

Purpose of the studyPurpose of the study

Research questions Research questions

What do people with disabilities, older people, What do people with disabilities, older people, and people with mental health issues and people with mental health issues understand as the causes of their social, understand as the causes of their social, economic and political exclusion?economic and political exclusion?

How can a systemic understanding of exclusion How can a systemic understanding of exclusion enable the identification of actions that enable the identification of actions that contribute to greater inclusion of people with contribute to greater inclusion of people with disabilities, older people, and people with disabilities, older people, and people with mental health issues ?mental health issues ?

Research designResearch design

• Pilot in BangladeshPilot in Bangladesh

• Participatory action researchParticipatory action research

• Two research streams:Two research streams:→ with 11 with 11 local NGO peer researcherslocal NGO peer researchers→ with 7 community peer researcherswith 7 community peer researchers

The processThe process

Three workshopsThree workshopsCollection of data Collection of data

The learningThe learning

Results will be revealed in May, in the final Results will be revealed in May, in the final reportreport

Feedback from researchersFeedback from researchers

• What they enjoyed and gainedWhat they enjoyed and gained• What they found difficultWhat they found difficult

What the researchers enjoyed and learnedWhat the researchers enjoyed and learned

• Enjoyed being included in the whole process; Enjoyed being included in the whole process; • Gained a better understanding of the lives of Gained a better understanding of the lives of

older people and people with disabilities;older people and people with disabilities;• Shared similar issues (CPR);Shared similar issues (CPR);• Felt more positive and supportive; less Felt more positive and supportive; less

embarrassed (CPR);embarrassed (CPR);• Felt empowered to speak up (CPR); Felt empowered to speak up (CPR); • Gained new soft and technical skills. Gained new soft and technical skills.

What the researchers found difficultWhat the researchers found difficult

• Talking directly to people with learning Talking directly to people with learning difficulties or people with mental health issues;difficulties or people with mental health issues;

• Barriers to communicate with people with Barriers to communicate with people with hearing impairment; hearing impairment;

• Difficulties to have older people talking about Difficulties to have older people talking about their personal issues;their personal issues;

• Point to the study; Point to the study; • Compensation, etc. Compensation, etc.

Key asks for Post 2015 (1/2)Key asks for Post 2015 (1/2)

• A rights based framework A rights based framework with equality and non-with equality and non-discrimination as priority themes (UNCRPD & discrimination as priority themes (UNCRPD & MIPAA)MIPAA)

• A cross-cutting theme on A cross-cutting theme on equality and non-equality and non-discrimination discrimination in all development goals; in all development goals;

• The The full and equal participation full and equal participation of people with of people with disabilities and older people in the development disabilities and older people in the development of the framework; of the framework;

Key asks for Post 2015 (2/2)Key asks for Post 2015 (2/2)

• Data disaggregated Data disaggregated by age, gender, ethnicity by age, gender, ethnicity and disability; and disability;

• Better Better monitoring mechanisms monitoring mechanisms on ageing and on ageing and disability; disability;

• Health-related goals Health-related goals must apply to everyone;must apply to everyone;

• A goal on delivering the A goal on delivering the universal adoption of universal adoption of social protection floorssocial protection floors for everyone. for everyone.

Next stepsNext steps

• Movie in April (funded by Participate)Movie in April (funded by Participate)

• Report in MayReport in May

• Publication in the fallPublication in the fall

• Input for MDGs summit in SeptemberInput for MDGs summit in September

• On-going advocacy around the post-2015 processOn-going advocacy around the post-2015 process

• Funding Funding

Thank you! Questions? Thank you! Questions?

Copyrights picturesCopyrights pictures

• Cambodia/ © HelpAge International 2011Soung Sot, 69- Battambang, Cambodia

• Kenya / © HelpAge International 2012Engolete, 57, looks after 7 grandchildren

• Bangladesh / © HelpAge International 2013Bangladesh Women’s Health Coalition (BWHC)

• Bangladesh / © HelpAge International 2013Voices of the Marginalised workshop

• Gaza /© HelpAge International 2011Roqia, 73 and Mahmood, 85- Shatee camp

• Tugela Ridley/Sightsavers, Kate Holt/Sightsavers, Peter Caton/Sightsavers, Marion Steff/Sightsavers