Marion Steff (April 2013). Inequalities and the Voices of the Marginalised study
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This document summarizes a study on inequalities faced by older people and people with disabilities. It discusses how these groups were not included in the Millennium Development Goals and outlines the scale of disabilities and an aging population worldwide. The study aimed to gather voices of marginalized groups in Bangladesh to understand exclusion and identify actions to promote inclusion in a post-2015 framework. Peer researchers with disabilities participated and provided feedback on gaining skills but also difficulties communicating with some groups. The study will inform advocacy for a rights-based post-2015 framework that promotes participation, data disaggregation, monitoring, and universal social protection.
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Marion Steff (April 2013). Inequalities and the Voices of the Marginalised study
- 1. Inequalities and theInequalities and the Voices of theVoices of the Marginalised studyMarginalised study Marion Steff, PhD - SightsaversMarion Steff, PhD - Sightsavers ODI - 18th April 2013ODI - 18th April 2013
- 2. TheThe contextcontext Three organisations:Three organisations: Two vulnerable groups not included in the MDGsTwo vulnerable groups not included in the MDGs •Older peopleOlder people •People with disabilitiesPeople with disabilities
- 3. OverviewOverview InequalitiesInequalities •Millennium DeclarationMillennium Declaration •Lost in the MDGsLost in the MDGs •Obligation of Member StatesObligation of Member States to address inequalitiesto address inequalities •Key driver for the post 2015Key driver for the post 2015 development frameworkdevelopment framework •Persistent global challengePersistent global challenge
- 4. Scale of the problem (1/3)Scale of the problem (1/3) Ageing:Ageing: Currently, more people are over the ageCurrently, more people are over the age of 60 than children under 5. By 2030, peopleof 60 than children under 5. By 2030, people aged over 60 will outnumber children under theaged over 60 will outnumber children under the age of 10.age of 10. Disability:Disability: Between 15 and 20% of theBetween 15 and 20% of the population worldwide live with some form ofpopulation worldwide live with some form of disability. 80% of people with disabilities live indisability. 80% of people with disabilities live in developing countries and face a greater risk ofdeveloping countries and face a greater risk of living in poverty.living in poverty.
- 5. Scale of the problem (2/3)Scale of the problem (2/3) Ageing & disability:Ageing & disability: More than 46% of peopleMore 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 peopleWorldwide more than 250 million older people experience moderate to severe disability.experience moderate to severe disability. Dementia:Dementia: The number of people living withThe number of people living with dementia worldwide is currently estimated atdementia worldwide is currently estimated at 35.6 million, with a twofold rise estimated by35.6 million, with a twofold rise estimated by 2030 and numbers more than tripling by 2050.2030 and numbers more than tripling by 2050.
- 6. Scale of the problem (3/3)Scale of the problem (3/3) Limited dataLimited data No systematic dataNo systematic data gatheringgathering No disaggregatedNo disaggregated datadata No consultation with older people and peopleNo consultation with older people and people with disabilitieswith disabilities
- 7. The Voices of the Marginalised studyThe Voices of the Marginalised study
- 8. Supportive organisationsSupportive organisations • Alzheimer’s DiseaseAlzheimer’s Disease International (ADI)International (ADI) • Basic NeedsBasic Needs • The Secretariat of theThe Secretariat of the African Decade forAfrican Decade for Persons withPersons with DisabilitiesDisabilities
- 9. 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 surveyThe need to adjust key international survey instrumentsinstruments • Paper by E. Samman & L. Rodriguez-Takeuchi (2013)Paper by E. Samman & L. Rodriguez-Takeuchi (2013)
- 10. Our partners (2/2): IDSOur partners (2/2): IDS • Interested by the issues faced by older peopleInterested 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
- 11. to gather the voices of people with disabilities,to gather the voices of people with disabilities, older people, and people with mental healtholder people, and people with mental health issues and provide qualitative input to informissues 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
- 12. Research questionsResearch questions What do people with disabilities, older people,What do people with disabilities, older people, and people with mental health issuesand 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 exclusionHow can a systemic understanding of exclusion enable the identification of actions thatenable the identification of actions that contribute to greater inclusion of people withcontribute to greater inclusion of people with disabilities, older people, and people withdisabilities, older people, and people with mental health issues ?mental health issues ?
- 13. Research designResearch design • Pilot in BangladeshPilot in Bangladesh • Participatory action researchParticipatory action research • Two research streams:Two research streams: → with 11with 11 local NGO peer researcherslocal NGO peer researchers → with 7 community peer researcherswith 7 community peer researchers
- 14. The processThe process Three workshopsThree workshops Collection of dataCollection of data
- 15. The learningThe learning Results will be revealed in May, in the finalResults 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
- 16. What the researchers enjoyed andWhat the researchers enjoyed and learnedlearned • Enjoyed being included in the whole process;Enjoyed being included in the whole process; • Gained a better understanding of the lives ofGained 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; lessFelt 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.
- 17. What the researchers found difficultWhat the researchers found difficult • Talking directly to people with learningTalking directly to people with learning difficulties or people with mental health issues;difficulties or people with mental health issues; • Barriers to communicate with people withBarriers to communicate with people with hearing impairment;hearing impairment; • Difficulties to have older people talking aboutDifficulties to have older people talking about their personal issues;their personal issues; • Point to the study;Point to the study; • Compensation, etc.Compensation, etc.
- 18. Key asks for Post 2015 (1/2)Key asks for Post 2015 (1/2) • A rights based frameworkA 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 onA cross-cutting theme on equality and non-equality and non- discriminationdiscrimination in all development goals;in all development goals; • TheThe full and equal participationfull and equal participation of people withof people with disabilities and older people in the developmentdisabilities and older people in the development of the framework;of the framework;
- 19. Key asks for Post 2015 (2/2)Key asks for Post 2015 (2/2) • Data disaggregatedData disaggregated by age, gender, ethnicityby age, gender, ethnicity and disability;and disability; • BetterBetter monitoring mechanismsmonitoring mechanisms on ageing andon ageing and disability;disability; • Health-related goalsHealth-related goals must apply to everyone;must apply to everyone; • A goal on delivering theA goal on delivering the universal adoption ofuniversal adoption of social protection floorssocial protection floors for everyone.for everyone.
- 20. 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 • FundingFunding
- 21. Thank you! Questions?Thank you! Questions?
- 22. Copyrights picturesCopyrights pictures • Cambodia/ © HelpAge International 2011 Soung Sot, 69- Battambang, Cambodia • Kenya / © HelpAge International 2012 Engolete, 57, looks after 7 grandchildren • Bangladesh / © HelpAge International 2013 Bangladesh Women’s Health Coalition (BWHC) • Bangladesh / © HelpAge International 2013 Voices of the Marginalised workshop • Gaza /© HelpAge International 2011 Roqia, 73 and Mahmood, 85- Shatee camp • Tugela Ridley/Sightsavers, Kate Holt/Sightsavers, Peter Caton/Sightsavers, Marion Steff/Sightsavers
Editor's Notes
- Start with an overview of why we feel it is important to conduct this piece of research (i.e. that marginalised populations are not being adequately reached by the current MDGs and that in order to make sure the next development framework addresses their needs, we need to understand what these are)
- The UN global consultation on inequalities has identified that it is the obligation of Member States to address inequalities because of the principles and standards of international human rights treaties. The consultation pointed out that striving for equality was identified as fundamental in the 2000 Millennium Declaration, and is a key driver for the post 2015 development framework. Inequalities are a persistent global challenge which affect us all, in all countries, and have deep and harmful consequences for everyone in society. Many types of inequalities have worsened even when human development progress has been rapid. The Millennium Development Goals (MDGs) have enabled important progress in human development through highlighting poverty, hunger, children, HIV and AIDS, education and aid disbursement. Nevertheless, age and disability are two areas linked to inequalities, poverty, disadvantage and discrimination that the MDGs have not addressed adequately. Explanation older people (60 and older); explanation disability
- Highlight that while recent data reveals that the scale of the problem faced by marginalised groups we are focusing on is huge (e.g. data from world disability report and equivalent data from an ageing/mental health perspective), there is limited accurate data available and no systematic gathering of data on disabled people, older people or on mental health and this needs to be addressed, hence the work that Emma Samman is doing Globally the world is ageing rapidly and will continue to do so over the coming century. Today, in 2013, more people are over the age of 60 than children under 5; by 2030, people aged over 60 will outnumber children under the age of 10. The fastest demographic transition is happening in developing countries with profound implications for older people, households, community infrastructure, and social policy. Widespread toleration of age discrimination leads to human rights abuse and difficulties of access to essential services in older age
- Ageing is also associated with a higher probability of living with a disability. Worldwide, more than 46 per cent of people aged 60 years and over live with disabilities, and in some low income countries 43 per cent of people aged 60 or above live with a disability. Worldwide more than 250 million older people experience moderate to severe disability. In relation to Alzheimers and other dementias, whose cost in 2010 has been calculated at 1% of global GDP , the 2012 WHO and Alzheimers Disease International report that there is a new case of dementia every four seconds somewhere in the world Global ageing will result in a possible 24 million new cases by 2050. In fact the number of people living with dementia worldwide is currently estimated at 35.6 million, with a twofold rise estimated by 2030 and numbers more than tripling by 2050.
- Highlight that while recent data reveals that the scale of the problem faced by marginalised groups we are focusing on is huge (e.g. data from world disability report and equivalent data from an ageing/mental health perspective), there is limited accurate data available and no systematic gathering of data on disabled people, older people or on mental health and this needs to be addressed, hence the work that Emma Samman is doing
- Integrating older age, disability and mental health issues into household surveys: progress and outstanding gaps’ this paper discusses currently available data and its limitations, constraints to better data collection and efforts needed to adjust key international survey instruments – the World Bank’s Core Welfare Indicator Questionnaire (CWIQ) and Living Standards and Measurement Survey (LSMS), Macro International’s Demographic and Health Survey (DHS) and the UNICEF Multiple Indicator Cluster Survey (MICS) – to collect reliable data on these sources of inequality, alongside other household indicators.
- CPR in difficult situations themselves (poverty, little support, no livelihood, etc)
- The
- 60 stories collected by peers researchers 76 stories collected by action researchers Total: about140
- The researchers enjoyed being involved in the whole process, meaning from the design of the study to the elaboration of the questions, the collection of the data, and the analysis of the results. They felt they were for the first time fully included in a context where they had the opportunity to speak up, make a difference, and gather the views of other people, in similar poverty situations. While at first, the researchers were unsure what they would gain from the study, they quickly grasped that the experience could prove to be stimulating and enriching. Interestingly enough, they felt they became more supportive and positive about disability and ageing because they realised that their own situation as well as the situation lived by many other people, was something not to be ashamed of. Besides, researchers mentioned they learned a new range of soft and technical skills which they will potentially re-use in their life such as identifying positive and negative stories, how to approach and speak to people, how to use voice recorder, etc. Overall, researchers felt more empowered to speak up and get involved in their respective community to not only share the results of the study but also the experience they gained and make a difference in terms of rights.
- Researchers sometimes faced challenges gathering stories due to communicational and social barriers. For instance, they often could not obtain stories directly from people with learning difficulties or with mental health issues. Relatives often felt it was their duty to answer on their behalf while the researchers would have like to talk directly to them. Similarly, interacting with people with hearing impairment proved to also be tricky because these participants did not always use a recognised sign language where an interpreter could have facilitated the exchange. The researchers relied on relatives. Besides, older people had a tendency to not want to talk about their own difficulties but were rather focusing on the challenges of their community. They did not seem to realise they had needs and rights too. Finally, understanding the research study by the participants represented another challenge: some wondered why they were asked to share their personal stories and did not see the point; others wondered which compensation they will get while not working, etc.
- framework must be rights based with equality and non-discrimination as priority themes. Comprehensive human rights legislation, including a Convention on the rights of older people, is necessary to clearly articulate these rights. the obligation if member states to respond to ageing within the mdgs (MIPAA) and disability (UNCRPD) 2012 will mark 10 years since the adoption of the Madrid International Plan of Action on Ageing (MIPAA), a comprehensive action plan for governments, civil , etc 1. human rights norms 2. connections between ageing ad disability in all the goals 3. evidence from people as well as data 4. targets and indicators must respond to all people focus on ageing and disability as well as others 5. excluding attitudes must be recognised and worked on 6. policies and programmes that have strong impact and demonstration effect
- The results will form the basis of a publication and will provide input into the States parties meetings in New York in September 2013, and inform ongoing advocacy work on issues of older persons and persons with disabilities in the post 2015 process.