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Insight
Plus
Post-2015:
lessons from our
engagement
Issue 7 June 2013
www.sightsavers.org
©LauraCrow/Sightsavers
www.sightsavers.org
Front cover photo:
Motitram Meghwal earns his living
making rope in Rajasthan, India
Contents
Foreword	2
Dominic Haslam	
The post-2015 agenda or how to make it big
in international aid	 4
Dominic Haslam	
Amplifying the voices of people with disabilities:
Sightsavers’ engagement with the post-2015
process at country level	 7
Virginia Kamowa	
Positioning disability in the centre stage of inequality:
a southern perspective to post-2015	 12
Akbar Mehfuz Alam, Sudipta Mohanty	
Health in the post-2015 agenda	 17
Juliet Milgate	
Liberia: a politics of hope	 21
Adoley Sonii, Reverend Fallah S. Boima	
Voices of the Marginalised: the use of participatory
action research to influence the post-2015 discussions	 25
Marion Steff, Nusrat Zerin, Jahangir Alam	
Post-2015: lessons from our engagement	 28
Juliet Milgate
Page 1
From the editor
Claire Jago, Learning Support Officer
Welcome to the seventh
issue of Insight Plus,
Sightsavers’ bi-annual
learning review.
Working with partners across Africa, Asia and the
Caribbean, Sightsavers’ aim is to eliminate avoidable
blindness and promote equality of opportunity for
people with disabilities. This series collates learning and
best practice from across our programmes, with each
issue focusing on a different thematic area.
In this issue, we take a look at the Millennium
Development Goals or, more specifically, what will
happen when they expire in 2015 and are replaced with
a new global development framework. Sightsavers has
been actively engaging with the post-2015 agenda at
various levels, advocating for a framework that supports
our ultimate aims of universal availability of quality eye
health and full inclusion of people with disabilities.
The articles in this journal demonstrate the breadth
and depth of our engagement, from a national to an
international level, looking at the lessons we have learnt
so far.
I hope you find Insight Plus useful, and welcome your
comments and suggestions. Please send your feedback
to learning@sightsavers.org
Sightsavers
Grosvenor Hall
Bolnore Road
Haywards Heath
West Sussex
RH16 4BX
UK
Tel: +44 (0) 1444 446600
Fax: +44 (0) 1444 446688
www.sightsavers.org
Copyright
Any Insight Plus material may be
freely reproduced, provided that
acknowledgement is given to
Sightsavers as the author.
ISSN 2044-4338
www.sightsavers.orgPage 2
For those of us involved in international
advocacy work at Sightsavers, it sometimes
feels as if 2015 will never arrive. We’ve been
working on what gets called ‘the post-2015
agenda’ for nearly two years now and there
is still a long way to go, both in terms of
effort but also time; as I write this we’ve
recently passed the milestone of 1,000 days
to go until the end of the current Millennium
Development Goals, which expire in 2015.
But obviously there are colleagues involved
in other parts of the organisation or who’s
advocacy work focuses on other issues, who
may not be up to speed on what we’re doing,
or perhaps aren’t really clear why we’re doing it.
So in the lead up to the UN General Assembly
Foreword
Dominic Haslam, Director of Policy and
Strategic Programme Support
Dominic Haslam
©Sightsavers
Page 3
session on the Millennium Development Goals
in September, I really welcome the timing of
this edition of Insight Plus.
I hope that through the articles included,
people from across Sightsavers will be able
to see the relevance of working on this key
international development framework, and
understand the importance of having our voice,
and the voices of those we work for, heard in
the process and reflected in the outcomes.
Simply put, our organisational strategy is to
demonstrate to governments, individuals and
other stakeholder organisations both why and
how our ultimate aims of universal availability
of quality eye health and inclusion of people
with disabilities can be achieved.
I cannot imagine any single more powerful
statement of this, than a future global
development framework which is inclusive of
people with disabilities and which commits
all UN member states to realise the Right
to Health, including eye health, within a set
timeframe, in all countries.
I hope the articles within this edition of Insight
Plus demonstrate that we can and are having
an impact on this agenda. There is still much
more to do to achieve our aims and I look
forward to working with all of you to make
this happen.
“I hope that people will be able to see the
relevance of working on this key international
development framework, and the importance
of having our voice, and the voices of those we
work for, heard”
www.sightsavers.orgPage 4
Forgive me if I start this article about the
future with a quick return to the past, but any
discussion about what happens when the
Millennium Development Goals (MDGs) expire
in 2015 has to start with a quick recap on what
the MDGs themselves are, how they came
about and what they’ve achieved. There’s a lot
of material out there on that, written by people
who were far more involved at the time and
know more about it than I do, so this will be
relatively brief, but I hope useful.
Bluntly put, although the impetus came from
the highly acclaimed and very politically
participatory Millennium Declaration, the MDG
framework itself – which includes eight goals,
18 targets and 48 indicators – was put together
in windowless rooms, by United Nations
officials and technocrats. If the simplicity and
focus of the framework isn’t evidence enough
of this fact, it’s also the opinion of one of the
framework’s creators, Mark Malloch-Brown.
This is important to know, as it partly explains
the strengths of the framework; crucially,
galvanising political will, but also providing
focus, measurability of progress and wider
communicability. A neat framework allowing
for these things is far easier to achieve with
a limited number of people involved, even if
they’re working within a structure as complex
as the UN. However, this process and the
framework’s neat structure have also attracted
wide-ranging criticism: that the MDGs are too
narrow; that critical areas were missed; that
it only focuses on things that can be easily
measured and not enough of the right systems
were put in place to measure progress,
including in reducing inequality; that it has had
very little transformational or structural impact
in terms of access by poor people to power, or
in terms of a reduction in global inequalities;
and finally and most simply, that most of the
MDGs are seriously off-track and progress
against these goals still needs to be achieved.
There are many criticisms beyond this, one of
the most interesting being that the funds spent
by aid donors on health areas such as malaria
and HIV/AIDS actually partially replaced
money that national governments in “recipient
countries” would have spent anyway. But I’d
need another article to outline all the criticisms
and frankly, others have already done this. Two
that are very relevant to Sightsavers and our
mission are:
1)	The framework had a significant focus on
health; three of the eight current goals are
health-related. However, those three goals
had too much of a focus on mortality-
related specific health issues (maternal and
infant mortality, HIV/AIDS, malaria and TB)
and too little on either morbidity-related
health care or on health systems which
would deliver a wide range of services
(including eye health).
In fact, one argument is that, at least initially,
damage was done to health systems by
the focus on HIV/AIDS and other MDG-
related programmes, as it skewed available
resources to these diseases and away from
other activities. So nurses received better
pay if working on HIV/AIDS programmes,
drugs supply systems were swamped by
supplies for these diseases, and community
health workers focused entirely on those
programmes as they were the only
conditions they had the supplies to treat.
This is definitely less the case now and the
HIV/AIDS community is now often used as
an example of how to operate a vertical
programme in a health-system supporting
or health-system strengthening way.
Nevertheless it’s important to remember
that focusing on one narrow, specific
issue can be detrimental to a system as a
whole; this is why Sightsavers isn’t calling
for a goal on eye health, but will be calling
for a goal which supports health systems,
potentially with one measure of the quality
of that health system being the availability of
affordable and accessible eye care.
2)	The second criticism of specific
relevance is that many of the goals had
targets expressed as percentages of
overall populations, for example MDG 1
“eradicating extreme poverty and hunger”.
Target 1A under this goal is to “halve the
proportion of people whose income is less
The post-2015 agenda or how to
make it big in international aid
Dominic Haslam, Director of Policy and Strategic Programme Support
Page 5
than $1.25 a day”. We can argue another
time about the definition of poverty and
whether the $1.25 dollar a day definition is
almost too narrow. However, the point here
is that the language is important. In order
to halve, reduce or increase anything, doing
the easiest things first and working your
way to the hardest may look like the logical
place to start. To give an example, imagine
you are a runner who lives on a hill. You
normally run up the hill and walk back down,
but you can only run 3k as a result. If your
aim changes and you now want to run 5k,
the logical thing to do is to start by running
down the hill instead and then walking back
up once you’ve run your 5k. You’ve met your
aim, but by doing so you’ve probably only
marginally improved your fitness.
The same thing happened with the MDGs.
As they didn’t specifically state targets for
reaching the poorest or most marginalised,
alongside aggregate achievements, many
programmes made progress by helping
those already close to achieving the goals.
This was not necessarily by design, but
simply because the most marginalised don’t
access programmes by definition; they are
marginalised. So any programme which
doesn’t address their specific needs will, by
default, end up helping those already better
off. Clearly, people living on $1.20 a day
should be helped to increase income, that’s
not the point, but if you only help those on
$1.20 you will miss the poorest.
Why is this relevant to Sightsavers?
Because, as we know, people with
disabilities are one of the more marginalised
groups in all societies. Without goals or
targets on their inclusion present in the
MDG framework, they have missed out on
much of the progress made by other groups
within the same communities. Evidence
often cited is that having a disability still
makes you twice as likely to never go to
school. Contrast that with girl children, who
during the MDG period have significantly
increased their access to primary education
in many countries. Again, that is crucial
and must continue, particularly in those
countries where gender inequality in primary
education is still a key issue. But it is unfair
that girls and boys with disabilities continue
to miss out on perhaps their only chance
at even a basic education, and that people
with disabilities continue to have less access
to jobs, earn less when they do work, are
excluded from health services and so on,
across the entire MDG framework.
This is why Sightsavers will support calls for
a framework which specifically includes a
reduction in inequality, based on the clear
evidence that greater inequality reduces
growth, creates social and political conflict
and clearly has direct impacts on those who
miss out. But we’ll also be directly calling
for data collected for reporting progress
within each goal to be disaggregated by
disability and age group, in addition to
gender. Indicators under each goal will
include measuring how these groups were
included in progress against the targets, in
addition to numbers benefitting in total. And
each goal should have a target to reduce
inequality and improve access for these
groups, across the life of the goal. Progress
or success in meeting goals can only be
claimed if both absolute numbers improve
and the relative share of marginalised
groups also improves.
Criticisms aside, few people really doubt that
the framework has led to improved results
and increased spend in some policy areas,
although the amounts are disputed. In many
donor countries, it has also undoubtedly
galvanised political and public support for
some areas of the development agenda
and has been a useful communication tool.
It has also informed the focus of national
and sectoral development plans in many
developing countries; some would say to
the detriment of more holistic development
processes, although I’d argue that it isn’t a fault
of having a framework, it’s a fault of having too
narrow an agenda within that framework (for
example, having a disease rather than a health
systems focus).
All of which hopefully makes it clear that having
Sightsavers’ issues included within a future
framework, after 2015, could play a major
role in the delivery of our strategy. I’ve also
hopefully laid out what it is that we hope to
achieve. As I said in the foreword, we’ve been
working on this for a year so far, so I’ll finish
this article by talking a bit about what we have
achieved so far and where next.
The first thing to say is that the process this
time, at least to this point, looks very different.
The UN has promised and is delivering a
wide range of opportunities to engage and
submit opinions, evidence and content into
its Task Team; the team of UN staff with the
www.sightsavers.orgPage 6
huge task of supporting the development of
the new framework between now and 2015.
These have included among other things:
thematic consultations, opinion polls, national
consultations across the globe, and civil
society, academic and private sector inputs
into the High Level Panel of Eminent Persons
(HLP), set up by the UN Secretary General to
discuss, debate and deliver a report on the
post-2015 framework to the next UN General
Assembly in September.
Discussions will then follow between member
states, using the HLP report as a starting point,
but also going far beyond that. It’s expected
this will be done through a mechanism called
the Open Working Group, which consists
of 90 member states, chaired by Kenya and
Hungary, and which has the remit to discuss
and hopefully merge the MDGs’ successor
framework with the Sustainable Development
Goals which came out of the Rio plus 20
environmental process. The Open Working
Group will be supported by the UN Task Team
so many of the same people will continue to
be involved, although the HLP’s work will be
completed. We will need to work differently in
this phase, as much on a country by country
level as internationally.
So with all this complexity and politics, what
have we achieved so far? We’ve certainly
put a lot of effort in, feeding into many of
the thematic consultations and facilitating
partners in taking part in some of the national
consultations, with many of our country offices
playing a leading role in this. We are also
heavily involved in the global Beyond 2015
campaign, where I sit on the international
executive committee, and which gives us
improved access to the HLP (including
the London, Monrovia and Bali meetings,
in which we played direct roles, as well as
supporting partners to actively contribute).
Within these processes, we have so far
made good progress in ensuring disability
is on the agenda, with evidence that the UK
government is now convinced data should be
disaggregated by gender, age and disability,
among other variables, but with disability
third in the list; a good place to be. The UK
government is key at present as the UK Prime
Minister is currently one of three co-chairs of
the HLP.
We have also been influencing the debate in
the media, with a number of blogs placed in a
range of well-read online media on issues such
as inequality, health, participation, disability
and education. We are also participating
strongly in the health network Action for
Global Health, which is a leading civil society
voice in the health sector, and are working
closely with others to ensure an appropriate
overall health goal replaces the current three
goals. It’s probably fair to say that securing
an indicator which specifically mentions
eye health is a work in progress, but we are
currently developing a comprehensive position
on health within the post-2015 context and this
will be a significant step forwards, putting us in
a better position to successfully advocate for
our position.
So good progress made so far. But we’ve had
this sort of progress before and will continue
to keep the pressure on to ensure words are
kept and that the final framework will reflect
the aims I’ve outlined above…
…And then of course, the work begins again;
to ensure the goals are built into international
structures and processes and national
development plans, that the right resources
are made available and that planned changes
actually happen. A long road, but one I look
forward to us taking over the next 15 years!
Page 7
Introduction
The Millennium Development Goals (MDGs)
represent a concerted effort to address global
poverty and some notable progress has been
made since they were developed in 2000. Yet,
it is common knowledge that a key weakness
with the current MDGs has been a comparative
failure to reach specific vulnerable groups,
including people with disabilities. As noted by
the United Nations Report, “the most pressing
issue faced by persons with disabilities is not
their specific disability, but rather their lack of
equitable access to resources and services
such as education, employment, health
care and social and legal support systems”1
.
This exclusion has resulted in people with
disabilities having disproportionately high
levels of poverty2
.
The new post-2015 development framework
is an opportunity to avoid a repeat of the
failures of the current MDGs, and our aim at
Sightsavers is to see a post-2015 process that
tackles inequality and is inclusive of the world’s
one billion disabled people. The UN Secretary
General has stipulated that “the post-2015
development framework is likely to have best
development impact if it emerges from an
inclusive, open and transparent process with
multi-stakeholder participation.”3
Sightsavers
has taken this opportunity of the UN’s
commitment to an inclusive post-2015 process
to ensure the voices of our partners, especially
blind and disabled peoples’ organisations
(BPOs and DPOs), are articulated in the
process. Our engagement with the process
has transcended the international to the
national level. This is crucial as it is at the
national level where we have links with the
DPOs and BPOs whose voices we would like to
see articulated in the post-2015 process.
As an organisation, our messages are the
same at the international, regional and national
levels. We believe it is time to ensure that
people with disabilities are specifically included
in the process and outcomes of the post-2015
agenda. Our recommendations are that the
post-2015 process and framework should:
v
	Ensure the full and equal participation of
people with disabilities.
v
	Promote disability-inclusive development by
ensuring disability is a cross-cutting theme
in all development goals. There should be
disability, age, and gender-specific targets
and indicators of progress for each goal and
data should be disaggregated in the design,
implementation, monitoring and evaluation
of programmes.
v
	Ensure a clear focus on equality, equity
and non-discrimination, drawing on the
fundamental values of the UN Convention
on the Rights of Persons with Disabilities.
v
	Ensure the most excluded children,
including those with disabilities, are given a
quality education.
v
	Build on the progress made in the current
MDGs by including at least one goal on
health. The health goal should create
opportunities to ensure the improvement
of people’s health, promote health
equity through universal health coverage,
strengthen health systems, include NTDs
and address the social determinants of
health.
Amplifying the voices of people
with disabilities: Sightsavers’
engagement with the post-2015
process at country level
Virginia Kamowa, Global Advocacy Coordinator
1
United Nations (2011), Disability and the Millennium Development Goals: A Review of the MDG Process and
Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts.
2
Ibid.
3
United Nations Secretary General’s Annual Report (2011), Accelerating progress towards the Millennium
Development Goals: options for sustained and inclusive growth and issues for advancing the United Nations
development agenda beyond 2015.
www.sightsavers.orgPage 8
Engaging with the post-2015
process at country level
Much of our national level engagement with
the post-2015 process has been through
supporting partner organisations to advocate
on their own or jointly with us, or sometimes
advocating alone as Sightsavers. Our country
teams have been involved with post-2015
initiatives taking place at the national level,
as well as contributing to Sightsavers’
international post-2015 influencing activities.
These have included participating in UN-
led country consultations;4
contributing to
UN thematic consultations on inequalities,
health, education and water and sanitation;
involvement with internal Sightsavers’ post-
2015 working groups; and engaging with the
High Level Panel of Eminent Persons on the
Post-2015 Development Agenda (HLP).
Case Study
Engaging with post-2015 in Kenya
In Kenya, Sightsavers, in collaboration with
the Ecumenical Disability Advocates Network,
held two post-2015 workshops for people
with disabilities between December 2012 and
January 2013. The initial workshop had 15
attendees and was aimed at planning how to
engage people with disabilities in influencing
the post-2015 agenda. The second workshop,
with 70 participants (50 percent from rural
areas), aimed at ensuring the national
process in Kenya was extensively consultative
and took into account as many divergent
views and inputs as possible. By the end of
the deliberations, it was agreed that the post-
2015 process should be inclusive of priorities
from the disability sector. The workshop
made recommendations for each of the nine
post-2015 UN consultation themes to inform
the consultation process. For example, the
following recommendations were made
under the inequalities, health and education
themes:
Inequalities: Require government to ensure
inclusion of people with disabilities in
governance processes and leadership at
all levels.
Health: Call on all governments
to develop national health
schemes that ensure children
and adults with disabilities
access appropriate and highest
standards of health care services.
Education: Require all
governments to develop and
operationalise effective and equal access
for all children with disabilities to education
opportunities at all levels (primary, secondary,
tertiary, vocational, formal and non-formal
education).
The workshop emphasised the need
for consistent engagement in post-2015
deliberations by the disability sector at local,
national, regional and international levels. At
the national level, a disability sector working
group was appointed, with a mandate to
follow up the workshop recommendations
and to continue raising awareness on the
need for engagement and participation
at all levels. At the international level, the
recommendations from Kenya will be
followed through to ensure that they are
included in the HLP report and in the post-
2015 summit to take place in New York in
September 2013.
However, having realised the information
gap that had existed on the part of the
national disability sector in Kenya, the
workshop resolved that there is a need to
raise awareness beyond Kenyan boarders. It
was therefore recommended that a regional
conference should be organised to bring
together the disability movement in a similar
exercise, not later than the end of May 2013,
possibly in Addis Ababa.
At the Kenya consultation meeting
©Sightsavers
4
We have participated in the following country consultations: Malawi, Ghana, Tanzania, Liberia, Cameroon, Kenya
and India
Page 9
Involvement with the UN-led post-2015
country consultations
The UN-led post-2015 country consultations
aimed to bring out the voice of civil society on
what they felt should follow the current MDGs.
Sightsavers worked to ensure that our BPO
and DPO partners were part of this process.
However, we realised that, in order for us and
our partners to effectively engage, we needed
to be clear about the process and how we
can influence it. Hence, an advocacy toolkit
was developed to guide our involvement at
country level. Some representatives of country
and regional teams (South Asia, Pakistan,
Malawi and Cameroon) provided input to the
development of this tool in an effort to ensure
that it is user friendly and practical.5
In order to register meaningful participation
in the country consultations, well thought
through preparations were nessesary. Through
our interactions with partners at the country
level, we discovered that many were not well
informed about the post-2015 process, let
alone impending country consultations and
how they could influence them. Therefore, one
of the main ways in which we engaged with the
process in some countries, for example Malawi
and Kenya, was to mobilise our DPO and BPO
partners to provide the required information
as well as prepare for engagement with the
process. It is for this reason that Sightsavers
organised and facilitated pre-consultation
workshops. These workshops were deemed
very useful and not only informed partners
about the process, but allowed partners with
diverse voices to reach some kind of common
understanding about key issues for influence.
The ultimate aim of our engagement with
country consultation processes is to see our
priorities specifically included in consultation
outcomes and the overall post-2015 agenda.
As these processes are currently continuing,
we do not yet know if we have achieved this
aim. However, even at this stage, Sightsavers
and our partners at country level are delighted
that we have managed to engage with this
important development process and had a
chance to articulate our priorities.
Thematic consultations
As disability is a cross-cutting issue, we
have ensured that we introduce it in all
relevant post-2015 thematic consultations,
including those on inequality, education
and health. Country representatives have
contributed to Sightsavers’ global responses
and contributions to thematic consultations.
Additionally there have been instances where
country teams have directly engaged with
thematic consultations taking place in their
own countries and beyond.
For example, in December 2012, Sightsavers’
Tanzania country office participated in a
civil society stakeholder health consultation
organised by Action for Global Health, which
was part of the UN thematic consultation
on post-MDGs. At the end of the workshop,
Sightsavers’ asks on health and disabilities
formed part of the priority list of issues to
be considered in the post-2015 agenda. A
Sightsavers representative was also featured
in the workshop output video clip, articulating
Sightsavers’ priorities for the agenda. The
workshop outcomes fed into the High
Level Dialogue on Health in the Post-2015
Development Agenda in Botswana (March
2013), which brought together high level
participants including Ministers of Health;
members of the High Level Panel of Eminent
Persons and their representatives; heads of
international organisations; representatives
from civil society and the private sector;
academics; public health experts; and youth.
In turn the outcomes of this meeting informed
the final report of the Health Thematic
Consultations.
Engagement with internal Sightsavers
working groups
It is our desire that all advocacy work
undertaken across the organisation is joined
up and contributes to achieving our overall
advocacy objectives. The post-2015 influencing
work is no exception; our national and sub-
national level experiences inform our advocacy
work at regional and international levels.
Hence, we ensure that we involve country
teams in international advocacy initiatives. Our
working groups on post-2015 influencing have
representation from country teams and their
engagement has been a valuable contribution
in framing our post-2015 influencing messages
and strategies.
A specific country engagement working group
was created to help spearhead Sightsavers’
country engagement with the post-2015
process. This group is instrumental in ensuring
5
The advocacy toolkit is an internal Sightsavers guide to help country teams efficiently engage with the UN process
on the post 2015 agenda through mobilising and coordinating BPOs/DPOs, like-minded organisations and other
partners and stakeholders’ input into the process.
www.sightsavers.orgPage 10
that country offices are actively involved with
the post-2015 process, but also that they have
the right guidelines and tools to advocate with.
Countries representatives from Kenya, Malawi,
Pakistan, Bangladesh, Cameroon and Sri Lanka
have been actively involved in ensuring the
group’s objectives are effectively met.
It is through this group that Sightsavers’
international level initiatives and all relevant
information has been disseminated to the
country level. This is also the group behind
the development of Sightsavers’ advocacy
tool (described above) to guide country
engagement with the post-2015 process.6
Engaging with the High Level Panel
The UN Secretary General appointed a High
Level Panel of Eminent Persons to advise on
the global development agenda beyond 2015.
In line with the UN’s quest for a transparent
and inclusive post-2015 process, the HLP has
held three consultation meetings with various
stakeholders in London (November 2012),
Monrovia (January 2013) and Bali (March
2013). At the international level, Sightsavers
engaged with all these processes to ensure
our priorities are articulated and included. At
the national level, our Liberia country office and
partners engaged directly with the Monrovia
HLP meeting. Sightavers’ Liberia Country
Director and the President of the National
Union of Organizations of the Disabled (NUOD)
participated in civil society consultation
sessions as well as engaging directly with HLP
members. They engaged with the specific
ageing and disability roundtable which was
an opportunity to share post-2015 aspirations
directly with HLP members. It was because
of these engagements and deliberations
(by Sightsavers and others) that some HLP
members, including President Johnson
Sirleaf of Liberia (HLP co-chair), specifically
mentioned disability as an important issue to
focus on in the post-2015 process.
Prior to the HLP consultations in Liberia,
Sightsavers, together with the National
Commission of Disability (NCD) and NUOD,
organised regional and national pre-
consultation workshops in the country. The
aim was to mobilise the disability fraternity
in Liberia to ensure that their voices are
brought to the HLP and that they are included
in shaping the post-2015 agenda. The pre-
consultation outcomes were collated into a
one pager of aspirations, which were fed into
the Monrovia HLP process by the two disability
representatives involved with the deliberations.7
The pre-consultation workshops provided
a rare opportunity for DPOs and BPOs to
deliberate on the future they want. However,
as workshops such as this occur so seldom,
they came with their own complexities. As
would be expected, DPOs and BPOs are not
homogenous, but diverse organisations with
varying and competing needs. This created
some tensions among the DPOs and BPOs
themselves during the deliberations and
Sightsavers, together with NCD and NUOD,
played an additional role of promoting
dialogue and coherence among the individuals
and organisations. It was clear during the
deliberations that some sort of unity is
important if DPOs are to effectively influence
the process.
Lessons learnt and challenges
Access to processes by the most
excluded
Despite the intention by the UN to open up the
post-2015 consultation process, the reality is
that there is still a high likelihood of exclusion
of the most marginalised and excluded
groups, including people with disabilities. For
instance, the post-2015 process, including the
HLPs, has been very fast paced. Information
about what is happening, and when and how
one can engage, has come out mostly at the
last minute making it very difficult for all to
engage as expected. If the processes have
been difficult to reach by individuals with
connections to international organisations and
offices fitted with unlimited internet access and
phones, what about those individuals coming
from the least developed parts of the world
with no access to modern technology? In other
words, even though efforts have been made to
make the process accessible by all, including
the poorest, the same process has fallen short
of employing mechanisms to ensure that it is
inclusive enough. I would therefore hope that,
going forward, measures will be put in place
to ensure a more inclusive and accessible
process. On our part, we have to be proactive
to ensure that we utilise all influencing
6
If you would like a copy of the Sightsavers advocacy tool, please contact vkamowa@sightsavers.org
7
Sightsavers supported the President of NUOD to participate in the Liberia HLP deliberations including being
represented on the Disability and Ageing roundtable.
Page 11
opportunities available and also create spaces
for our partners to engage.
Information
Information about the post-2015 process
is vital if one is to engage with the process
and influence effectively. However, different
DPO/BPO partners, as well as country
teams, are at different levels in terms of their
knowledge about the process. It is for this
reason that Sightsavers at the international
level has provided information about relevant
consultations and processes to its country
teams, who have in turn been instrumental in
ensuring that this is shared with partners. For
example, it was discovered during the pre-HLP
disability consultation workshops in Liberia,
that most partners would have been in the
dark about the process had it not been for the
information provided by Sightsavers. It is very
important, therefore, for Sightsavers, and all
other organisations with easier access to the
post-2015 process, to disseminate information
in accessible formats to as many partners as
possible.
Facilitation and coordination skills
DPOs and BPOs are not homogenous, but
diverse organisations with varying needs.
Therefore, precautions must be taken during
consultation workshops and deliberations to
ensure that diversity does not lead to conflict.
Through our engagements at country level,
we have learnt that good facilitation skills and
allowing enough time for deliberations have
helped to contain conflict and competition
among partners.
Steps forward and steps back
Our experience has taught us that the post-
2015 process has comprised of taking steps
forward and then steps back. The process has
allowed us and our DPO and BPO partners
to articulate our point of view and it has also
been very pleasing that, on many occasions,
individual members of the HLP have
mentioned disability as an issue that requires
specific focus in the post-2015 agenda.
However, these outcomes in themselves are
not enough; our main goal is to see a post-
2015 framework that includes our priorities. It
has therefore been disappointing, for example,
to see the HLP communiques from both
Monrovia and Bali exclude disability, despite
promises made. Going forward, our quest for
a disability inclusive post-2015 framework will
continue and we will proactively question any
lack of inclusion of our priorities at all levels of
the process.
Conclusion
Country engagement with the post-2015
process is very important for us. It is at the
country level where we have links with the
very people whose inclusion in the post-2015
development agenda we so much aspire
to. So far, we have made some positive
strides, but still there is more work to be
done to ensure that disability voices from
the grassroots are included in the post-2015
agenda. Opportunities are still available for
our country teams and partners to continue
influencing the process. At the international
level, the Conference of States Parties (taking
place in July 2013), the UN High Level Meeting
on Disability and Development, the UN MDG
review meeting, and the UN General Assembly
(all taking place in September 2013) are all
post-2015 processes that we are striving to
influence. The UN General Assembly is when
the UN Secretary General will present his
report on the post-2015 development agenda,
with recommendations for what the framework
should look like. Thereafter, inter-governmental
post-2015 processes will start. Our country
level engagement at this stage will be very
significant if we are to ensure explicit inclusion
of the voices of people with disabilities. As an
organisation, we will not rest until the post-
2015 framework includes priorities of people
with disabilities that will be implementable and
measured through disaggregated data.
www.sightsavers.orgPage 12
Positioning disability in the centre
stage of inequality: a southern
perspective to post-2015
Akbar Mehfuz Alam, Senior Programme Officer, North East India
Sudipta Mohanty, Programme Manager, North East India
Introduction
The current Millennium Development Goals
(MDGs) are widely recognised for their
contribution to global development; to
reducing hunger, improving nutrition, uplifting
women’s status and bringing consciousness
to environmental issues. There is also wide
acknowledgement that the current MDGs have
helped to define policies and programmes
at national and international level, providing a
framework for countries, leaders and donor
agencies to design development approaches
in a more strategic way. Global partnerships
between countries dealing with issues of
poverty reduction and human development
have also been enhanced by the MDG
framework.
However, the current goals are due to expire
in 2015 and the global search for a new
development framework has gained massive
momentum across world development
discourse. A widely held critique of the current
MDGs is that they were developed largely
by United Nations (UN) officials, without the
participation of the people most affected by
the issues that the goals sought to address.
The process was a predominantly north-
centered one, which resulted in the MDG
framework being levied on the south without
their involvement and ownership. Issues such
as inequality were not adequately captured in
the framework and the needs of people with
disabilities and other marginalised groups
were not fully addressed. The development
of a new framework to succeed the MDGs
is an opportunity to rectify this inequity, and
southern civil society organisations (CSOs)
©Sightsavers
Post-2015 orientation for grassroots disability leaders
Page 13
are demanding their participation and
ownership as key non-negotiable points in
this process. The UN has launched a number
of strategic initiatives to enable wide reaching
consultations on the post-2015 agenda and
CSOs around the globe are forming networks
and alliances in order to engage with these
processes and campaign for the inclusion of
their respective development priorities.
This article will explore the ‘southern
perspective’ further and look specifically at
how Sightsavers’ India offices have engaged
fully with the post-2015 discourse across its
length and breadth. Working closely with
national and international organisations, civil
society alliances, blind and disabled people’s
organisations (BPOs/DPOs) and partners,
we are seeking to highlight the issues facing
people with disabilities and place them at
the centre of the inequality agenda, which is
recognised not only in India, but throughout
countries in the south.
The rise of the south and its
influence on post-2015
The recent economic fallout in the north and
the simultaneous economic emergence of the
south has created a new global dividend in
terms of power and influence in the southern
world. The southern country groups like
BRICS1
and SAARC2
are expected to play
a major role in the next world development
framework, as these countries are not only
host to large world populations, but represent
areas of significant global poverty and
inequality. For example, of the total number
of people with disabilities in the world, 80
percent live in developing countries. Therefore,
unlike the current MDGs which were mostly
influenced by the global north, the global south
is emerging as a strong force to claim their
potential stake in the development of the post-
MDG framework.
Voices from India; a southern
perspective on inequality
In the southern world, the post-2015 discourse
is quickly gaining momentum and this is
particularly true in India, due to its strong civil
society organisations and networks working
on development issues. India has a population
of more than a billion people, including 70
million people with disabilities (based on
the projections made by many international
agencies like the World Bank3
, the World
Health Organization and the UN4
). It is also
host to one third of the world’s poor people
amidst half of the world’s dollar billionaires.
This growing inequality in the country is
recognised as a major barrier to progress
on the MDGs and has been given special
importance in the post-2015 dialogue in India.
A civil society consultation, held in New
Delhi in December 2012, strongly voiced the
inequalities faced by poor people, including
people with disabilities, older people,
indigenous people, women and girls. It
concluded that inequality is the biggest hurdle
to poverty reduction and recognised poverty
and inequality as top agenda priorities for civil
society engagement in post-2015. There was
demand that the experiences and expectations
of communities themselves should inform
the post-2015 process, so that a pro-poor
development architecture is built, whereby all
vulnerable groups are given due attention and
it becomes a global responsibility to deal with
issues of inequality. This essentially means
the full participation of community groups and
organisations, the inclusion of their voices and
campaigns, and ultimately their total ownership
of their own development agenda.
Sightsavers’ post-2015
engagement in India
To achieve the aims described above,
Sightsavers has adopted a multilateral
engagement in influencing the post-2015
dialogue in India. At the national level,
Sightsavers has been engaged with leading
CSOs, national level coalitions and other
international agencies working on post-
2015. At the same time, we are also working
with partner organisations and with DPOs
and BPOs across the country to bring the
issues facing people with disabilities to the
forefront of the inequality agenda. In this
context, Sightsavers has adopted the following
key strategies to inform the post-MDG
development processes in the country:
1
BRICS- Brazil, Russia, India, China & South Africa
2
SAARC- South Asian Association for Regional Cooperation
3
People with Disabilities in India: From Commitments to Outcomes
4
Fact sheet on persons with disabilities. http://www.un.org/disabilities/documents/toolaction/pwdfs.pdf
www.sightsavers.orgPage 14
Working with partners
Sightsavers works with approximately 100
NGO partners across India, providing a strong
platform to ensure that disability takes centre
stage in the wider post-2015 discussions.
Partner events have been conducted
to orient partners on the processes for
influencing the post-2015 agenda, and on
how disability can be included in the new
development framework. Partners have also
been involved in the design of strategies
to engage communities and people with
disabilities at the grassroots level, and have
been developed as resource agencies for
other smaller organisations in their area. These
engagements with partners have helped to
mobilise both large and small CSOs on the
importance on highlighting disability and
inequality issues in post-2015 dialogues.
Generating community development
agreements
The hopes and aspirations of communities
and affected groups are always critical to
discussions on inequality. With the support
of partner organisations, community-level
awareness programmes are being undertaken
in Sightsavers’ projects to inform people with
disabilities and the wider community about
post-2015. Campaigns are being organised
at village and block level on the issues of
marginalisation and inequality, with DPOs and
BPOs taking the lead at block and district level.
Their leaders are actively participating in post-
2015 meetings and workshops organised by
other groups and coalitions, with the goal of
mobilising civil society consensus on the key
issues.
Creating a platform for the voices of
inequality
A common platform is essential for any social
movement to showcase its potential and its
collective response to an issue. It is in this
light that Sightsavers, through our partners, is
creating different platforms and opportunities
for post-2015 dialogue and engagement.
At state and regional levels, meetings and
workshops have been organised involving
disabled people’s groups and their leaders.
During these meetings, the DPOs and BPOs
discussed and generated their draft post-2015
development framework resolutions, which
will be collated for presentation to decision-
makers at state and national level meetings on
post-2015.
Undertaking relevant research and
evidence gathering
At the project level, research and evidence is
being generated to substantiate the dialogue
on inequality, with situation analysis reports
and case studies on the inequalities faced
by people with disabilities being developed
to critically inform the post-2015 campaigns.
Media campaigns will also be undertaken to
share this evidence and raise awareness of
the exclusion of people with disabilities in the
current MDGs and the need for their visible
representation in the next world development
goals.
Working with the state actors
Sightsavers is also engaged with key
government players to demand adequate
representation of disability in the post-MDG
development framework. In India, Sightsavers
is working closely with the National Disability
Commissioner, State Disability Commissioners,
the Department of Welfare, the Department
of Disability Affairs and other government
agencies to build a common consensus on
this issue.
Working with national level coalitions
Sightsavers has taken a twin track approach to
working with national coalitions on the post-
2015 agenda. On the one hand, Sightsavers
is part of a coalition formed by national
level organisations working on multilateral
development issues, and on the other, we are
forming an alliance with national level DPOs
and disability rights groups to campaign and
engage with post-2015. Through this strategy,
we aim to not only mainstream the voice of
people with disabilities in the dialogue of wider
development organisations, but also to bring
about a unified and harmonious campaign
within disabled people’s groups.
In addition, Sightsavers is also actively
contributing to national and global level
dialogues on post-MDGs. The civil society
consultation held in New Delhi in December
2012 recognised inequality as a major
cross-cutting issue in development, and this
consultation was followed by an international
meeting in the national capital, which involved
all major UN agencies and international
organisations.
Page 15
Righting the development
goals
The consultations from India emphasise that
the next set of development goals should
be based on the principles of human rights
and values, and that citizens hold the right to
development, which the state delivers as a
guardian. A key learning emerging from the
current MDGs is that the new development
goals should not be seen just as a target for
the nation, but as a duty-responsibility that the
state must deliver for its citizens. Rights-based
groups in India have therefore demanded
that the next development goals should be
legalised, with states being required to define
their commitments in terms of legislative
measures, policies and resource allocations.
DPOs and BPOs have leant their voice to
this demand, believing that it will provide
more scope for the realisation of the United
Nations Convention on the Rights of Persons
with Disabilities (UNCRPD). The post-2015
process provides a momentous opportunity
to harmonise the UNCRPD with the new
development goals and will also promote
greater global partnership between developed,
developing and underdeveloped states, going
beyond bilateral interests.
The candidate goals from a southern
perspective
Various research findings have proved that
the current MDGs did not include people
with disabilities in a significant manner and,
as a result, they have been excluded from
advances in development during the first
decade of the 21st century. Their exclusion,
in itself, has also hindered progress towards
achievement of the MDGs. For example, one
third of the 72 million children currently out of
school are disabled, equating to 90 percent
of children with disabilities in developing
countries not attending school5
. Similarly, of
the total disabled population in developing
countries, 82 percent live below the poverty
line6
. The statistics clearly spell out that people
with disabilities are not merely an invisible
minority, but a significant population who have
been hijacked by political and development
processes that do not recognise or prioritise
their needs. The post-2015 agenda is therefore
an historic opportunity to not only multiply the
strengths of the current MDGs, but also to
correct the errors, exceptions and exclusions,
and to include the 500 million7
people with
disabilities who mostly live in poverty without
access to information, education, employment
or health care.
5
UNESCO, Children with Disabilities
6
ILO, 2009
7
http://www.un.org/esa/socdev/enable/diswpa04.htm
©Sightsavers
Meeting with our partners to discuss post-2015
www.sightsavers.orgPage 16
The post-2015 chapter in India has called
strongly for what it terms ‘disability inclusive
Sustainable Development Goals’ with clear
targets and accountability mechanisms. Some
of the candidate goals, collated through
various consultations with disabled people’s
groups, are as follows:
By the end of the first quarter of the 21st
century, we will:
Goal 1: eradicate extreme poverty among
people with disabilities and reduce relative
poverty through inclusive growth and
employment
Goal 2: ensure universal access to sustainable
food, water and sanitation for all, including
people with disabilities who are most
neglected
Goal 3: end preventable child and maternal
mortality and provide basic health care for all,
including people with disabilities
Goal 4: ensure children with disabilities
everywhere receive quality education and have
good learning outcomes
Goal 5: ensure responsible and sustainable
business that adequately accounts for people
with disabilities and their representation
Goal 6: ensure that governance is more open,
accountable and inclusive to all, including
people with disabilities
Goal 7: establish effective global partnerships
for responsive and inclusive development
Goal 9: ensure a sustainable, healthy and
resilient environment for all
Goal 10: ensure gender equality with special
attention to women with disabilities and other
vulnerable groups
Conclusion
Within India, and especially within Indian CSOs,
there is a growing consensus that inequality
is the biggest hurdle to poverty elimination,
and that poverty and inequality are the priority
agenda for civil society engagement in post-
2015 dialogues. In the case of people with
disabilities, inequality has the most devastating
consequences as it is rooted in their history
and their political and cultural nomenclature,
which has manifested over the years in
economic deprivation, social exclusion and
isolation. The post-2015 agenda represents
an opportunity to address these injustices,
and vulnerable groups, including people
with disabilities and their representative
organisations, have started collating their
voices and campaigns against inequality.
From the southern perspective, the role of the
state is critical in the delivery of development
goals and, in particular, it is essential that the
state looks after the interests of poor people,
small producers, people with disabilities and
the marginalised. State responsibilities must,
therefore, be well accounted for in the post-
MDG framework, ensuring that the next set of
development goals don’t depend too much on
big corporations, charities, wealthy individuals
or aid agencies.
The post-2015 agenda represents a huge
opportunity to reconfigure the current MDGs
to accommodate and prioritise voices from the
south. This simply means that nobody holds
a ‘remote control’ to guide the next world
development framework, but that everybody
and every nation must be provided with
adequate space and responsibilities to shape
the world they want.
Page 17
Health in the post-2015 agenda
Juliet Milgate, Acting Head of Policy
This is Jesse Antwi Agyeman from Koforidua,
Ghana. He is six years old and has suspected
childhood cataract. For Jesse and most
children of his age the current international
discussions about what replaces the
Millennium Development Goals (MDGs) after
2015 are a million miles away from his daily life,
play, school and family.
Background
But it’s precisely because of children like Jesse
that we should be and are engaging in these
critical international processes and working to
improve the education, inclusion, participation
and health of millions like him. The MDGs have
framed international development since 2000,
galvanising popular support and directing
political attention, resources and policy around
health, child mortality, primary education,
extreme poverty and hunger, gender, global
partnerships and environmental sustainability.
In health, significant gains have been achieved
under the MDGs: under-five mortality declined
by 35 percent from 1990 to 2010 and over
the same period childhood malnutrition, a
risk factor for poor eye health and disability,
fell from an estimated 88 deaths per 1000
live births to 57. Substantial progress has also
been made in reducing maternal mortality
and reducing morbidity and mortality due to
HIV infection, TB and malaria. On neglected
tropical diseases (NTDs), the World Health
Organization (WHO) reports that it has reached
a turning point in its efforts to overcome
these diseases thanks to a coordinated and
integrated approach adopted since 20071
.
However, the MDGs were only set for a period
©ZulMukhida/Sightsavers
Jesse is fitted for dark glasses to protect his eyes from dust and sunlight
1
WHO (2012) Monitoring the achievement of the health-related Millennium Development Goals (A65/14).
www.sightsavers.orgPage 18
of 15 years, and in 2015, they will expire. Broad
international consensus is that they should be
replaced with a new development framework
– but the question is, what should that new
framework look like and what issues should it
address? And so the bargaining begins…
The current process
Although the MDGs targeted health,
development and other policies in developing
countries, they were actually formulated in
2000 with surprisingly little consultation with
developing country governments, let alone
civil society, communities and households,
resulting in a framework that didn’t fully reflect
people’s needs. As a consequence, this time
around, the process is all about consultation
and Sightsavers has been engaged in the
range of processes almost from day one. For
eye health and health, this means participation
in global meetings at the WHO and the health
systems symposium in Beijing last November,
contributing to a range of multilateral
processes, including the UN thematic
consultation on health and the development of
an EU common position on post-2015, as well
as numerous contributions and submissions
of papers to civil society consultations (such
as BOND and Action for Global Health in the
UK, Concord at EU level and Beyond-2015,
the global campaign aimed at influencing the
new framework and civil society meetings). At
country level we’ve supported national-level
participatory processes by providing briefings.
But the reality is that we are only at the
beginning. Between now and 2015 the debate
will continue.
So what is Sightsavers calling
for in this new development
agenda?
The inclusion of health and water, no
less!
Firstly, that there is a clear health goal. That
may sound a little too obvious, but it is by
no means certain that health will feature
prominently in the post-2015 agenda. If we
are to safeguard the eye health and health of
children like Jesse, then health and wellbeing
must be at the heart of any new development
framework. Good health is a pre-condition
for sustainable development, the outcome
of sustainable development and an indicator
of what people-centred, rights-based,
inclusive and equitable development seeks
to achieve. This inclusion of health is closely
and inextricably linked to the need for a goal
on access to water and sanitation. In our
view, we cannot have one without the other.
Evidence suggests that progress on WASH
and other social determinants of health has
been hugely uneven. We are calling for a new
framework that integrates water, sanitation and
hygiene (WASH) and other components of the
social determinants of health (people’s living
conditions including employment, housing and
income) into the health agenda.
Secondly, investment in health systems is
critical. If we are to improve people’s eye
health, secure access to essential, sustainable
NTD interventions, and improve the health and
well-being of all people, including people with
disabilities, then we need effective, functioning
health systems that can deliver quality, safe
and responsive eye health and health services.
The truth is that without urgent improvements
in the performance of health systems, the
current, let alone the next MDGs (or whatever
they’re called), will not be met.
Action to address health inequity
through Universal Health Coverage
Thirdly, we need to address inequities. Health
inequities are those unfair and avoidable
differences in health and health service
provision that arise from socioeconomic
factors, such as level of education, occupation,
and household wealth or income; from
geographical location; and from ethnicity,
gender and disability. This is why Sightsavers is
lobbying for the inclusion of Universal Health
Coverage (UHC) in the new framework. UHC
is a “system in which everyone in a society can
get the health care they need without having
to incur financial hardship2
”. It covers the
range of services available to people, which
from Sightsavers’ perspective must include
access at primary health care level to services
which include eye health care and NTDs; the
coverage of those services, specifically aimed
at targeted populations such as the poorest
and most vulnerable; and social protection,
aimed at protecting people from catastrophic
health expenditure. UHC and the strong health
systems needed to deliver it won’t reduce
health inequities overnight; it is a progressive
2
WHO (2010) World Health Report 2010 Health Systems Financing The Path to Universal Coverage
Page 19
agenda that will take governments many years
to achieve, but it is a cornerstone of reducing
health inequities. If we are to reduce inequities
– including those in health – then health
systems will have to play a critical role.
Eye health and NTDs
Next, we are calling for eye health to be
deemed a priority health issue for the 15
years after 2015. This is more challenging for
us to achieve; at present the negotiations
commonly reflect a long list of health issues,
with campaigners arguing for the inclusion of
this condition over that. In making the case for
eye health we are seeking to demonstrate not
only the critical health impact of eye health, but
the economic impact also. What we do know is
that non-communicable diseases are likely to
feature significantly in the new framework and,
if that is the eventual outcome, Sightsavers will
be advocating at national level for governments
to take action to ensure that eye health is
included within non-communicable disease
prevention, treatment and control strategies, as
well as within national health and development
policies.
Lastly of course we are advocating for a
strengthened political focus on neglected
tropical diseases, which affect one billion of
the world’s poorest people, so that we can
sustain the impressive health gains to date in
NTDs. There are clear targets for the control,
elimination and eradication of NTDs set out
in the WHO Roadmap for NTDs: Accelerating
work to overcome the global impact of NTDs3
and we are calling for these goals to be
incorporated into a post-2015 framework.
Here again lies a challenge for us; although
significant progress has been made in NTDs
under the current MDG agenda, much of
this led by WHO in more recent years, NTDs
were not explicitly highlighted in the goals
or associated targets and indicators. We are
working to turn this tide, but the critical point
for us is that people’s health is protected and
safeguarded on a life-long basis.
What have we learned?
In this crowded international arena on
advocacy, it is critical that Sightsavers’
messages are clear, easy to understand and
put the people we work with, our beneficiaries
like Jesse, first. A key challenge in working on
post-2015 is that there are so many different
processes, forums, consultation exercises,
meetings and network opportunities, that
keeping up to date with the processes, let
alone participating in them, is immensely
challenging. A key learning from this is
the importance of being strategic. Of
understanding where Sightsavers’ value
added is and building on that strength. For
Sightsavers in health that means advocating
on issues where we have clear experience and
knowledge such as in disability, equity, NTDs,
water and sanitation, eye health and health
systems.
3
http://www.who.int/neglected_diseases/NTD_RoadMap_2012_Fullversion.pdf
©ZulMukhida/Sightsavers
Jesse having his eyes examined by Dr James Addy
www.sightsavers.orgPage 20
Where are we now?
At the end of April the United Nations
published the outcome of its global
consultation on health4
entitled Health in the
Post-2015 Agenda. Specifically on a health
goal, it recommends that the post-2015 health
agenda should: include specific health-related
targets as part of other development sector
goals; take a holistic, life-course approach
to people’s health; accelerate progress
where MDG targets have not been achieved;
and address the growing burden of non-
communicable diseases (NCDs), mental
illness, and other emerging health challenges.
From Sightsavers’ perspective, this potential
inclusion of NCDs in the post-2015 agenda
could offer us important opportunities for
discussing eye health at national level, not to
mention of course, disability. The paper also
supports the inclusion of UHC and the need to
strengthen health systems, which is positive for
Sightsavers.
The High Level Panel report
In May the High Level Panel of Eminent
Persons published its report on the post-2015
development agenda. The HLP proposed
five ‘transformational shifts’ to drive the post-
2015 agenda. The first of these “leave no
one behind” says that “the next development
agenda must ensure that in the future neither
income nor gender, nor ethnicity, nor disability,
nor geography, will determine whether a
mother can give birth safely, or whether a child
has a fair chance in life”.
The report represents a significant step
forward for the inclusion of disability and
extensively cites people with disabilities, for
example by recognising people with disabilities
at all levels of society and implementing laws
and policies protecting human rights. It also
highlights the importance of data in the new
framework and calls for a data revolution. For
Sightsavers, this point is crucial - if we are
to achieve inclusion and the participation of
people with disabilities in the new development
agenda (be it in eye health or health, education
or social inclusion) then we need effective
ways of measuring and monitoring progress.
Good data is key to this.
However, we were disappointed that the HLP
report did not give health systems and UHC
the prominence they deserve. The fundamental
problem is that quite simply health systems are
just not up to the job of delivering the critical
health interventions that people need. So
while the report has rightly focused on areas
such as NTDs (which we warmly welcomed!),
maternal mortality, under-five mortality and
sexual and reproductive health and rights, it has
failed to make recommendations to improve
the underlying structural and health systems
needed to bring about these changes. It
focuses on targeted interventions rather than an
approach underpinned by UHC that contributes
to building stronger health systems which can in
turn address both morbidity and mortality.
On education, the report’s recommendations
for how education could feature in the post-
2015 framework are weak. Sightsavers would
welcome a universal early childhood target that
takes quality into account. At present, quality
at the primary level only relates to literacy
and numeracy in the report. While literacy
and numeracy are hugely important, such an
approach is too narrow. Problem-solving skills
and respect for human rights should also be
measured.
But the broader point is that, although critical,
these reports are just early milestones in the
process. We will be keeping you updated on
our activities, briefings and thinking.
What about Jesse?
So what does all of this mean for Jesse? Well
the fact that this process has been consultative
(although it is fair to say that some processes
have been less effective than others) means
that it is more likely that the needs of Jesse
and his family will be more accurately
represented in the post-2015 framework. It is
impossible to foresee the eventual outcome,
but Sightsavers will use all the mechanisms
and opportunities available to us to secure
an outcome that is more equitable and fair,
promotes and protects good health, eye health
and health systems, and works to promote the
inclusion of people with disabilities and secure
access to water and sanitation. There’s a long
way to go, but it looks like it’s going to be an
exciting time.
4
Health in the post-2015 agenda - report of the global thematic consultation on health (2013)
http://www.worldwewant2015.org/health
Page 21
Liberia: a politics of hope
Adoley Sonii, Country Director, Liberia
Reverend Fallah S. Boima, National Union of Organizations of the Disabled, Liberia
Introduction
In July 2012, the UN Secretary-General, Ban Ki-
moon, appointed the Liberia leader, President
Ellen Johnson Sirleaf, along with Prime Minister
David Cameron of the UK and President
Susilo Bamband Yudhoyono of Indonesia, as
co-chairpersons of the High Level Panel of
Eminent Persons (HLP). The purpose of the
HLP was to make recommendations on what
the development framework should look like,
once the Millennium Development Goals have
expired in 2015.
The appointment of President Sirleaf
represented a great opportunity for
Sightsavers’ Liberia country office, and our
partners, to engage with HLP processes. This
article focuses on the various levels of that
engagement and how we worked to ensure
that the voices and views of people with
disabilities were heard and taken on board by
the HLP.
Liberia’s engagement with
post-2015 consultation
processes
Following meetings in New York and London,
the third meeting of the High Level Panel
was held in Monrovia in January 2013. The
theme of this meeting was ‘National Building
Blocks for Sustained Prosperity and Economic
Transformation’. The HLP meeting itself was
preceded by differing levels of consultation
to gather views and input from civil society
organisations (CSOs) and from people with
disabilities.
©Sightsavers
Sightsavers and partners engage with post-2015 in Liberia
www.sightsavers.orgPage 22
The Monrovia HLP and CSO
consultations
The work of CSOs across Africa has gained
significant recognition in the aim to unite and
empower citizens all over the world towards
equality, social justice and prosperity. They
have played specific roles in making the voices
of vulnerable and marginalised citizens heard
loud and clear. With the meeting of the HLP
in Monrovia came an opportunity for CSOs
and other stakeholders to speak up and send
a clear message to the HLP, with the aim of
influencing its ultimate recommendations on
what a post-2015 development framework
should include.
The meeting in Monrovia brought together 60
civil society representatives from Africa, Latin
America and the Caribbean, Europe, Asia and
the Arab regions. Represented amongst the
global CSOs was also the National Union of
Organizations of the Disabled, a Liberian civil
society member organisation. The event posed
a unique opportunity for these organisations
to share evidence with the HLP and discuss
a clear vision for the future. Prior to the HLP
meeting itself, the CSOs held discussions
that focused on addressing the perspectives
of different marginalised groups. Emerging
from these group meetings was a strategic
consensus position paper, which was formally
presented to President Sirleaf for and on
behalf of the HLP.
In response to this CSO position paper, four
face to face round table meetings were held
of the first day of the HLP meeting, focusing
on children and youth, women and gender,
people with disabilities and older people, and
small businesses, farmers, traders and trade
unions. These group meetings between CSO
members and HLP members were interactive
and very beneficial. CSO group members
had the opportunity to put forth their areas of
concern and raise legitimate points that need
to be addressed by world leaders, as well as by
concerned stakeholders. These included:
v
	Continuous economic uncertainty and the
financial crisis
v
	Persistent and widening inequality
v
	Rising unemployment, low wages, insecurity
and unhealthy working conditions
v
	Continuing risk and vulnerability from
climate change
v
	Persistent and new conflict
The CSOs also put forth a number of
recommendations aimed at improving equity,
including:
v
	Inclusive and sustainable growth and human
development.
v
	The need to address the specific needs
of children and youth to participate in
economic transformation and policies to
provide more and better education.
v
	Gender equality, the protection of
women’s human rights (including sexual
and reproductive rights) and support for
women’s empowerment.
v
	Full and equal participation of people with
disabilities and older people.
v
	Reformed labour laws and policies to
ensure full and decent employment for all,
including people with disabilities.
HLP members had the opportunity to interact
with CSO members, to listen to their questions
and provide answers; they expressed
equal concern in response to the CSO’s
recommendations. It was an experience of
stating what needs to be done and confirming
the need for action to reverse the world
situation for a better world.
Pre-HLP regional consultations
Given the importance of the opportunity
represented by the HLP meeting and
associated thematic consultations, our
participating partner in Liberia, the National
Union of Organizations of the Disabled
(NUOD), sought prior input from their member
organisations. In order to do this, a number of
regional consultations were held in the three
strategic regions of Liberia; Western, Central
and South Eastern.
The aim of these regional consultations was
to ensure that those people living even in the
most remote towns and villages could play a
part in the decisions that affect their lives. That
people with disabilities and other marginalised
people could have the chance to contribute
to decisions and strategic plans made about
the development of their country. A summary
of discussions and recommendations derived
from each of the regional meetings was
presented by regional representatives at a
national level union organisation meeting.
All three statements recommended that the
post-2015 framework should be inclusive of
people with disabilities and compliant with
the UN Convention on the Rights of Persons
with Disabilities (UNCRPD). They also all
Page 23
recommended that the post-2015 sustainable
development agenda must promote economic
opportunities for people with disabilities
and poorer people, ensuring integration of
marginalised groups and communities in the
production and growth process.
The outcomes of these regional consultations
with disabled people’s organisations (DPOs)
informed NUOD’s representative, Rev Fallah
S. Boima, and his engagement in the round
table discussions with other global CSO
members. The central message coming out
loud and clear from the regions is that we
must ensure that people with disabilities are
not left out of the new post-2015 development
framework. The HLP meeting presented a
unique opportunity that united the DPOs in
their discussions and encouraged them to put
aside their differences and join their voices
in making concrete recommendations on the
post-2015 framework.
What worked well with our
engagement and what results
did we see?
Through the series of engagements described
above we successfully brought together
people with disabilities from three regions in
Liberia and afforded them the opportunity to
speak freely on critical issues. The levels of
attendance and participation were impressive;
the DPOs were determined to make their
voices heard and spoke clearly on the issues
important to them and the need for the new
development framework to fully include people
with disabilities.
Sightsavers’ Advocacy Coordinator, Virginia
Kamowa, reflecting on the Monrovia meeting
in her Sightsavers’ blog1
, commented that it
had been very encouraging to see a good
representation of people with disabilities
from around the globe, including national
representatives, actively participating in the
meeting deliberations. To echo Professor Gita
Sen’s remarks, this just goes to show that
“people with disabilities are not just vulnerable;
given an opportunity they have the potential for
full and meaningful participation for realising
the agenda of the post-2015”.
What challenges did we
face and what might we do
differently next time?
Of particular disappointment, was the fact
that disability was not included in the final
civil society joint communique. Despite
strenuous advocacy to include disability, the
final communique called for ‘data [to be]
disaggregated by age and sex’. While we were
not successful in getting the communique
changed, it seems we succeeded in getting
our messages across in other ways. Amina
Mohammed, the UN Secretary-General’s
Advisor on post-2015, specifically mentioned
at the ageing and disability round table that
she was glad that discussions were continuing
Reflections
from Reverend Fallah S. Boima
As head of the National Union of Organizations of the Disabled in Liberia, I led the
consultations among persons with disabilities across the country. Our main focus prior to the
High Level Panel meeting was to engage persons with disabilities in Liberia to find out which
issues were of high importance to them and then to communicate these issues to the High
Level Panel delegates.
The UNCRPD describes disability as an evolving concept and the issue of disability in Liberia
is also evolving. Most of the engagements in the disability community have been perceived as
“first of its kind”. Never before in Liberia have persons with disabilities ever been considered
as part of the community or allowed to participate in decision-making processes. We are now
hopeful that, as a result of the consultations, among persons with disabilities, the post-2015
global development framework will give a high priority to disability, most especially to those in
developing countries.
1
www.sightsavers.org/blogs/insights
www.sightsavers.orgPage 24
on these two areas, and gave her support for
goals that apply across gender, disability and
age.
In addition, despite the extensive participation
of people with disabilities in the various
consultations prior to the HLP, once the
HLP itself began it was felt that the level of
prominence given to disability as a group was
less than that given to other groups. Amongst
other challenges faced was the short lead time
in preparing for the regional and national level
consultations.
Conclusion
Grass roots engagement and information
gathering was important and key to our
successes. We learned during our regional and
national consultations that people speaking
directly about the issues that affect their lives is
more important and more powerful than others
speaking on their behalf without first hearing
from them. The process of consultation that we
used brought more satisfaction and sense of
importance to people with disabilities. If we are
to succeed in our advocacy efforts and make
a difference to the lives of those we represent,
other CSOs should be encouraged to fully
engage our beneficiaries through effective,
grass roots consultation. We need true,
honest and sincere consultation with those we
represent no matter who they are or where
they are.
Virginia Kamowa commented “In my view the
Monrovia post-2015 HLP meeting has been a
success. It was great to hear President Sirleaf
pick out disabled people in her response to
presentations made to her by different groups
of civil society (disability and ageing; women
and gender; children; youth; farmers, traders,
informal, sector, trade unions and small
businesses); she said that the High Level Panel
needs to have a ‘particular emphasis on the
disabled who have been marginalised all these
years’”.
Page 25
Voices of the Marginalised: the use
of participatory action research to
influence the post-2015 discussions
Marion Steff, Policy Advisor, Social Inclusion
Nusrat Zerin, Programme Officer, Bangladesh
Jahangir Alam, Project Officer, Bangladesh
Introduction
ADD International, HelpAge International
and Sightsavers are currently working with
the Institute of Development Studies (IDS)
to conduct a research study which will feed
into the post-2015 discussions. The pilot has
just been completed in Bangladesh and we
are hoping to extend the study to another
three countries. Its overall goal is to bring
the perspectives of those who are highly
marginalised, including people with disabilities,
older people and people living with mental
health issues, into post-2015 policy-making.
The originality of the Voices
study
There is a growing recognition of inequalities
arising from marginalisation, where those in
excluded situations rarely have the opportunity
for their voices to be heard. Their invisibility
is exacerbated by a lack of relevant data. The
Voices study aims to:
v
	Build new evidence: The Voices of the
Marginalised research study provides a
real opportunity to build a body of data to
ensure the needs and rights of marginalised
populations are included in current and
future development initiatives such as the
Millennium Development Goals (MDGs)
and their successor framework. In a time
where governments spend important sums
of money on development programmes,
it is crucial to not only bridge research
and policy, but also to provide concrete
recommendations, based on systematic
research, to improve the quality of life of the
most excluded.
v
	Use a creative and inclusive methodology:
This research seeks both to understand
and address the social, economic and
political exclusion of people with disabilities
and older people by using a systemic
approach to answer the research questions.
Sightsavers has been keen to ensure
that people with disabilities play an active
role in the study. As such, the research
methodology used is called ‘Participatory
Action Research’ (PAR) and it aims to break
down the divide between ‘researchers’ and
the ‘researched’; it is research with people,
not on people. In PAR, the researchers can
be individuals affected by issues identified
in the study, who are in pursuit of answers
to the questions and problems that touch
their daily lives.
The researchers
Based on PAR, two types of Bangladeshi
researchers have been trained to conduct
the study. First, staff from national Non-
Governmental Organisations (NGOs) working
on ageing and disability issues have been
involved. They are called peer researchers and
worked to collect stories from peers to draw a
picture of the challenges that national NGOs
working with these groups are dealing with.
Second, older people and people with
disabilities from Bhasantek slum in Dhaka
and villages in the district of Cox’s Bazar were
contacted to see if they wanted to become
community peer researchers. They are
individuals in challenging situations themselves
(poverty, no livelihood, little support from
relatives, lack of access to health services,
etc.) and are also beneficiaries of national
NGOs working in ageing or disability. Upon
acceptance, they have been trained to collect
stories from their peers.
www.sightsavers.orgPage 26
Learning from the Voices study
The results of 140 stories are currently being
analysed. While it is too early to reveal them,
preliminary learning can already be shared
on behalf of the researchers, as well as the
staff from Sightsavers involved in the study in
Bangladesh and in the UK.
From the Bangladeshi researchers:
what they enjoyed and gained
All researchers enjoyed being involved in the
whole process, from the design of the study to
the elaboration of the questions, the collection
of the data, and the analysis of the results. The
community peer researchers 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, all researchers were unsure about what
they would gain from the study, they quickly
grasped that the experience could prove to be
stimulating and enriching. Interestingly enough,
they felt that they became more supportive
and positive about disability and ageing; the
community peer researchers realised that their
own situation, as well as that of many other
people, was not something to be ashamed
of, while the peer researchers appreciated
knowing more about the perspectives of
colleagues they interviewed. The community
peer researchers also mentioned that 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 a voice recorder, etc. Overall,
all researchers felt more empowered to
speak up and get involved in their respective
communities, to not only share the results of
the study and the experience they gained, but
also to make a difference in terms of rights.
From the Bangladeshi researchers:
what they found difficult
The community peer researchers sometimes
faced challenges gathering stories due to
communication 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 liked to
talk directly to them. Similarly, interacting
with people with hearing impairment proved
to be tricky because these participants did
not always use a recognised sign language
where an interpreter could have facilitated
the exchange. The researchers relied instead
on relatives. Older people had a tendency to
not want to talk about their own difficulties,
but focused on the challenges of their
community. They did not seem to realise
that they had needs and rights too. Finally,
participants’ understanding of the research
study represented another challenge: some
wondered why they were being asked to share
their personal stories and did not see the point
of the research.
From Sightsavers’ staff: what we
enjoyed and gained
All staff enjoyed being part of the Voices of
the Marginalised study. We were curious to
see how IDS could involve people living in
very poor conditions, who had no background
in research and who were, for the most part,
illiterate. We were pleasantly surprised to see
how well organised training could really open
up new skills and thinking for the community
peer researchers. Having the researchers
involved in each stage of the study proved
to us that, no matter what your background
or level of literacy, what is important is to be
involved and to listen to the voices of everyone.
This experience reinforced the idea that we
need to work with people with disabilities, and
not speak for them. As such, it was great to
witness how the community peer researchers
progressed in their thinking and how their
involvement could make a difference in not
only their life, but also in the lives of other
people with disabilities or older people.
In terms of data collection, having community
peer researchers with similar backgrounds to
the interviewees proved an excellent strategy
for collecting real information. Interviewees
felt more inclined to talk, despite sharing
experiences that were often painful and
difficult. In addition, coordination at the country
level between ADD International, HelpAge
International and Sightsavers worked really well
and brought new perspectives for collaboration
in the future.
From Sightsavers’ staff: what we found
difficult
In terms of data collection, people with mental
health issues were not included as much
as we wanted to. The reason was that the
organisations involved had less experience
of working with people with mental health
Page 27
issues, so were not able to properly direct
the researchers. It was the same situation
for people with multiple disabilities; the
organisations were less knowledgeable about
this issue and we therefore did not collect as
many stories as we could have.
Relative to the organisation of the study itself,
staff in Bangladesh felt that they should have
been more involved in decision-making, since
they were the ones implementing the study
on the ground. However, staff in the UK felt
that they did not want to load more work on
the shoulders of their colleagues in country
and therefore tried to disturb them as little
as possible. From this, we learnt the value of
being very clear at the beginning of any project
about the amount of work required, what
timeframes are feasible, and how much each
colleague can contribute.
Staff in Bangladesh also thought the
coordination of the study could have been
improved through better communication
between the three organisations in the UK.
For instance, we all believe it would have been
easier if one organisation had acted as the
lead agency. In addition, various other ideas
have been suggested to improve coordination
if the study were to expand, such as having
a research manager to be the focal point
for communication, and creating a steering
committee to help to take decisions on behalf
of all organisations concerned.
Finally, as this type of research study was a first
for Sightsavers, it resulted in a great deal of
work for all staff involved. Because of our lack
of experience in this field, we may have not
identified the best study locations to capture
the learning and data that we were seeking.
We could also have involved other interviewees
in the study, for example people with learning
difficulties, people with multiple disabilities, etc.
Conclusion and next steps
Overall, the Voices of the Marginalised study
and the use of a PAR methodology provides
Sightsavers with an excellent means to ensure
that the data collected truly reflects the
priorities of people with disabilities. To our
knowledge, this is the first study of this kind in
the field which focuses on both people with
disabilities and older people. The findings
should enable the United Nations, as well as
other policy makers on the international and
Bangladeshi scene, to have access to the
latest data available. We certainly hope that the
results will help pave the way for people with
disabilities to achieve their potential through
the application of an effective and inclusive
post-2015 development framework.
Still to come:
v
	The final report ‘We can also make a
difference’ will be ready in June 2013 with all
the results and recommendations. It will be
made available to staff of the organisations
involved and a summary version shared
publically.
v
	An event will be launched to promote the
findings of the study and to advocate for the
inclusion of older people and people with
disabilities in the post-2015 discussions and
frameworks. This will most likely take place
in September 2013, as a side event at the
UN General Assembly.
v
	Sightsavers and other partners are in the
process of identifying further funding in
order to extend the study to another three
countries.
v
	Other articles and events are planned.
Follow Sightsavers’ policy blog1
and our
policy twitter feed2
for more news on the
Voices of the Marginalised research
1
www.sightsavers.org/blogs/insights
2
https://twitter.com/Sightsavers_Pol
www.sightsavers.orgPage 28
Post-2015: lessons from our
engagement
Juliet Milgate, Acting Head of Policy
Reading this collection of articles on post-2015
I have been struck by the sheer breadth and
depth of Sightsavers engagement with the
new development framework and the range
of expertise employed by colleagues and our
partners. I was particularly interested to read
Akbar Mehfuz Alam and Sudpita Mohanty’s
analysis of the current context and issues
framing the post-2015 discussions in India,
which I highly commend.
The broad consensus, expressed in these
articles, is that progress against the current
MDGs has been uneven – both between and
within countries – in areas such as health,
for example, and that people with disabilities
have been excluded from the benefits of the
MDGs since their inception in 2000. Although
significant successes have been achieved –
such as the inclusion of disability in the HLP
report - we must remind ourselves that there
is a long way to go in the discussions and
debates.
It is clear to me that success in post-2015
won’t come as a result of one meeting, one
consultation or one briefing, but through
systematic, coordinated work from across the
organisation. From us sharing our messages
and enabling others to share theirs again and
again and again. What is not yet clear is the
extent to which the new post-2015 framework
will address these inequalities and inequities,
what the next framework will include and,
crucially, what it will continue to exclude.
So, based on our engagement to date,
presented in part through these articles, what
have we learned?
The importance of working in
partnership to deliver change
These articles provide so many examples
- in India, Liberia, Malawi and Kenya – of
Sightsavers working within networks or in
coalition with disabled people’s and blind
people’s organisations to put disability, human
rights, education and health on government’s
agendas.
Working in partnership is critical to achieving
long term change, whether it be advocating
for policy change, influencing programmatic
change or resource allocation, or raising
awareness of a particular issue. Virginia
Kamowa’s article highlights the role of
Sightsavers in supporting partners to engage
in the post-2015 national level consultations.
This demonstrates in my view our unique
role as an enabler in empowering DPOs and
BPOs to express their voice and share their
expertise and experiences and in amplifying
that voice; ensuring it is heard not just at local
and national level, but at global level too, and
specifically at the door of the UN.
That generating evidence and
knowledge is critical
The Voices research project, described by
Nusrat Zerin, Jahangir Alam and Marion Steff,
seeks to give people with disabilities, older
people and people living with mental health
issues a voice in shaping future development
policy through the post-2015 consultation
process. Using an inclusive, participatory
action research approach, the project
aims to break down the barriers between
‘researchers’ and the ‘researched’. This
Juliet Milgate
©Sightsavers
Page 29
research is important because it is generating
new knowledge about people’s experiences.
There is insufficient research about the
marginalisation and inequality experienced
by people with disabilities, older people and
people with mental health issues and this
research is critical to building our broader
knowledge base. It is our responsibility as a key
partner in this research to ensure its findings
are fed into the post-2015 processes as well as
shared with policy and decision-makers.
Getting the message right
Dom Haslam’s article shines a spotlight
on how the post-2015 processes over the
past 12 months have been both complex
and demanding - and I expect that little will
change from now until 2015! Even for those
of us influencing on a day-to-day basis it’s
very hard to keep track of what’s happening.
In this crowded advocacy space, a key lesson
to be learned is the importance of ’getting
the message right’. If our advocacy messages
are not clear, accessible and relevant then
they will not be taken into account. No matter
how hard we work. The Policy and Advocacy
teams have been working together to outline
our positions in health, education and social
inclusion; my article on health, for example,
sets out our thinking on eye health and NTDs,
health inequities and universal health coverage
and water. Over the next few months we hope
to share this thinking more widely, across
Sightsavers and our partners, and would
welcome your views.
Identifying where opportunities
exist
OK, so once we have our partners, our
clear evidence and our ‘right’ messages,
what’s next? Well, the answer is the right
opportunity. The London, Monrovia and Bali
HLP meetings, the UN thematic consultations
and national level consultations have all been
key opportunities. But it’s not just these high
profile meetings and consultations that present
us with opportunities to influence the agenda;
there’s a whole myriad of country-led and
local processes on-going. Our role here is to
look out for these opportunities and respond
where we can. Virginia writes about the
development of an ‘advocacy toolkit’ that has
been developed to enable both Sightsavers
and partners to: a) fully understand the
complex country consultation processes and
b) to understand how to influence them. If you
wish to learn more about this toolkit and how
to influence, please do not hesitate to contact
either Virginia (vkamowa@sightsavers.org) or
myself (jmilgate@sightsavers.org).
Finally if you have any questions about post-
2015 or are attending a meeting and would like
some information, please do not hesitate to
contact me in the policy team. I look forward to
hearing from you!
www.sightsavers.orgPage 30www.sightsavers.org Registered charity numbers 207544 & SC038110
Sightsavers
Grosvenor Hall
Bolnore Road
Haywards Heath
West Sussex
RH16 4BX
UK
Tel: +44 (0) 1444 446600
Fax: +44 (0) 1444 446688

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Insight plus issue 7 post-2015

  • 1. Insight Plus Post-2015: lessons from our engagement Issue 7 June 2013 www.sightsavers.org ©LauraCrow/Sightsavers
  • 2. www.sightsavers.org Front cover photo: Motitram Meghwal earns his living making rope in Rajasthan, India Contents Foreword 2 Dominic Haslam The post-2015 agenda or how to make it big in international aid 4 Dominic Haslam Amplifying the voices of people with disabilities: Sightsavers’ engagement with the post-2015 process at country level 7 Virginia Kamowa Positioning disability in the centre stage of inequality: a southern perspective to post-2015 12 Akbar Mehfuz Alam, Sudipta Mohanty Health in the post-2015 agenda 17 Juliet Milgate Liberia: a politics of hope 21 Adoley Sonii, Reverend Fallah S. Boima Voices of the Marginalised: the use of participatory action research to influence the post-2015 discussions 25 Marion Steff, Nusrat Zerin, Jahangir Alam Post-2015: lessons from our engagement 28 Juliet Milgate
  • 3. Page 1 From the editor Claire Jago, Learning Support Officer Welcome to the seventh issue of Insight Plus, Sightsavers’ bi-annual learning review. Working with partners across Africa, Asia and the Caribbean, Sightsavers’ aim is to eliminate avoidable blindness and promote equality of opportunity for people with disabilities. This series collates learning and best practice from across our programmes, with each issue focusing on a different thematic area. In this issue, we take a look at the Millennium Development Goals or, more specifically, what will happen when they expire in 2015 and are replaced with a new global development framework. Sightsavers has been actively engaging with the post-2015 agenda at various levels, advocating for a framework that supports our ultimate aims of universal availability of quality eye health and full inclusion of people with disabilities. The articles in this journal demonstrate the breadth and depth of our engagement, from a national to an international level, looking at the lessons we have learnt so far. I hope you find Insight Plus useful, and welcome your comments and suggestions. Please send your feedback to learning@sightsavers.org Sightsavers Grosvenor Hall Bolnore Road Haywards Heath West Sussex RH16 4BX UK Tel: +44 (0) 1444 446600 Fax: +44 (0) 1444 446688 www.sightsavers.org Copyright Any Insight Plus material may be freely reproduced, provided that acknowledgement is given to Sightsavers as the author. ISSN 2044-4338
  • 4. www.sightsavers.orgPage 2 For those of us involved in international advocacy work at Sightsavers, it sometimes feels as if 2015 will never arrive. We’ve been working on what gets called ‘the post-2015 agenda’ for nearly two years now and there is still a long way to go, both in terms of effort but also time; as I write this we’ve recently passed the milestone of 1,000 days to go until the end of the current Millennium Development Goals, which expire in 2015. But obviously there are colleagues involved in other parts of the organisation or who’s advocacy work focuses on other issues, who may not be up to speed on what we’re doing, or perhaps aren’t really clear why we’re doing it. So in the lead up to the UN General Assembly Foreword Dominic Haslam, Director of Policy and Strategic Programme Support Dominic Haslam ©Sightsavers
  • 5. Page 3 session on the Millennium Development Goals in September, I really welcome the timing of this edition of Insight Plus. I hope that through the articles included, people from across Sightsavers will be able to see the relevance of working on this key international development framework, and understand the importance of having our voice, and the voices of those we work for, heard in the process and reflected in the outcomes. Simply put, our organisational strategy is to demonstrate to governments, individuals and other stakeholder organisations both why and how our ultimate aims of universal availability of quality eye health and inclusion of people with disabilities can be achieved. I cannot imagine any single more powerful statement of this, than a future global development framework which is inclusive of people with disabilities and which commits all UN member states to realise the Right to Health, including eye health, within a set timeframe, in all countries. I hope the articles within this edition of Insight Plus demonstrate that we can and are having an impact on this agenda. There is still much more to do to achieve our aims and I look forward to working with all of you to make this happen. “I hope that people will be able to see the relevance of working on this key international development framework, and the importance of having our voice, and the voices of those we work for, heard”
  • 6. www.sightsavers.orgPage 4 Forgive me if I start this article about the future with a quick return to the past, but any discussion about what happens when the Millennium Development Goals (MDGs) expire in 2015 has to start with a quick recap on what the MDGs themselves are, how they came about and what they’ve achieved. There’s a lot of material out there on that, written by people who were far more involved at the time and know more about it than I do, so this will be relatively brief, but I hope useful. Bluntly put, although the impetus came from the highly acclaimed and very politically participatory Millennium Declaration, the MDG framework itself – which includes eight goals, 18 targets and 48 indicators – was put together in windowless rooms, by United Nations officials and technocrats. If the simplicity and focus of the framework isn’t evidence enough of this fact, it’s also the opinion of one of the framework’s creators, Mark Malloch-Brown. This is important to know, as it partly explains the strengths of the framework; crucially, galvanising political will, but also providing focus, measurability of progress and wider communicability. A neat framework allowing for these things is far easier to achieve with a limited number of people involved, even if they’re working within a structure as complex as the UN. However, this process and the framework’s neat structure have also attracted wide-ranging criticism: that the MDGs are too narrow; that critical areas were missed; that it only focuses on things that can be easily measured and not enough of the right systems were put in place to measure progress, including in reducing inequality; that it has had very little transformational or structural impact in terms of access by poor people to power, or in terms of a reduction in global inequalities; and finally and most simply, that most of the MDGs are seriously off-track and progress against these goals still needs to be achieved. There are many criticisms beyond this, one of the most interesting being that the funds spent by aid donors on health areas such as malaria and HIV/AIDS actually partially replaced money that national governments in “recipient countries” would have spent anyway. But I’d need another article to outline all the criticisms and frankly, others have already done this. Two that are very relevant to Sightsavers and our mission are: 1) The framework had a significant focus on health; three of the eight current goals are health-related. However, those three goals had too much of a focus on mortality- related specific health issues (maternal and infant mortality, HIV/AIDS, malaria and TB) and too little on either morbidity-related health care or on health systems which would deliver a wide range of services (including eye health). In fact, one argument is that, at least initially, damage was done to health systems by the focus on HIV/AIDS and other MDG- related programmes, as it skewed available resources to these diseases and away from other activities. So nurses received better pay if working on HIV/AIDS programmes, drugs supply systems were swamped by supplies for these diseases, and community health workers focused entirely on those programmes as they were the only conditions they had the supplies to treat. This is definitely less the case now and the HIV/AIDS community is now often used as an example of how to operate a vertical programme in a health-system supporting or health-system strengthening way. Nevertheless it’s important to remember that focusing on one narrow, specific issue can be detrimental to a system as a whole; this is why Sightsavers isn’t calling for a goal on eye health, but will be calling for a goal which supports health systems, potentially with one measure of the quality of that health system being the availability of affordable and accessible eye care. 2) The second criticism of specific relevance is that many of the goals had targets expressed as percentages of overall populations, for example MDG 1 “eradicating extreme poverty and hunger”. Target 1A under this goal is to “halve the proportion of people whose income is less The post-2015 agenda or how to make it big in international aid Dominic Haslam, Director of Policy and Strategic Programme Support
  • 7. Page 5 than $1.25 a day”. We can argue another time about the definition of poverty and whether the $1.25 dollar a day definition is almost too narrow. However, the point here is that the language is important. In order to halve, reduce or increase anything, doing the easiest things first and working your way to the hardest may look like the logical place to start. To give an example, imagine you are a runner who lives on a hill. You normally run up the hill and walk back down, but you can only run 3k as a result. If your aim changes and you now want to run 5k, the logical thing to do is to start by running down the hill instead and then walking back up once you’ve run your 5k. You’ve met your aim, but by doing so you’ve probably only marginally improved your fitness. The same thing happened with the MDGs. As they didn’t specifically state targets for reaching the poorest or most marginalised, alongside aggregate achievements, many programmes made progress by helping those already close to achieving the goals. This was not necessarily by design, but simply because the most marginalised don’t access programmes by definition; they are marginalised. So any programme which doesn’t address their specific needs will, by default, end up helping those already better off. Clearly, people living on $1.20 a day should be helped to increase income, that’s not the point, but if you only help those on $1.20 you will miss the poorest. Why is this relevant to Sightsavers? Because, as we know, people with disabilities are one of the more marginalised groups in all societies. Without goals or targets on their inclusion present in the MDG framework, they have missed out on much of the progress made by other groups within the same communities. Evidence often cited is that having a disability still makes you twice as likely to never go to school. Contrast that with girl children, who during the MDG period have significantly increased their access to primary education in many countries. Again, that is crucial and must continue, particularly in those countries where gender inequality in primary education is still a key issue. But it is unfair that girls and boys with disabilities continue to miss out on perhaps their only chance at even a basic education, and that people with disabilities continue to have less access to jobs, earn less when they do work, are excluded from health services and so on, across the entire MDG framework. This is why Sightsavers will support calls for a framework which specifically includes a reduction in inequality, based on the clear evidence that greater inequality reduces growth, creates social and political conflict and clearly has direct impacts on those who miss out. But we’ll also be directly calling for data collected for reporting progress within each goal to be disaggregated by disability and age group, in addition to gender. Indicators under each goal will include measuring how these groups were included in progress against the targets, in addition to numbers benefitting in total. And each goal should have a target to reduce inequality and improve access for these groups, across the life of the goal. Progress or success in meeting goals can only be claimed if both absolute numbers improve and the relative share of marginalised groups also improves. Criticisms aside, few people really doubt that the framework has led to improved results and increased spend in some policy areas, although the amounts are disputed. In many donor countries, it has also undoubtedly galvanised political and public support for some areas of the development agenda and has been a useful communication tool. It has also informed the focus of national and sectoral development plans in many developing countries; some would say to the detriment of more holistic development processes, although I’d argue that it isn’t a fault of having a framework, it’s a fault of having too narrow an agenda within that framework (for example, having a disease rather than a health systems focus). All of which hopefully makes it clear that having Sightsavers’ issues included within a future framework, after 2015, could play a major role in the delivery of our strategy. I’ve also hopefully laid out what it is that we hope to achieve. As I said in the foreword, we’ve been working on this for a year so far, so I’ll finish this article by talking a bit about what we have achieved so far and where next. The first thing to say is that the process this time, at least to this point, looks very different. The UN has promised and is delivering a wide range of opportunities to engage and submit opinions, evidence and content into its Task Team; the team of UN staff with the
  • 8. www.sightsavers.orgPage 6 huge task of supporting the development of the new framework between now and 2015. These have included among other things: thematic consultations, opinion polls, national consultations across the globe, and civil society, academic and private sector inputs into the High Level Panel of Eminent Persons (HLP), set up by the UN Secretary General to discuss, debate and deliver a report on the post-2015 framework to the next UN General Assembly in September. Discussions will then follow between member states, using the HLP report as a starting point, but also going far beyond that. It’s expected this will be done through a mechanism called the Open Working Group, which consists of 90 member states, chaired by Kenya and Hungary, and which has the remit to discuss and hopefully merge the MDGs’ successor framework with the Sustainable Development Goals which came out of the Rio plus 20 environmental process. The Open Working Group will be supported by the UN Task Team so many of the same people will continue to be involved, although the HLP’s work will be completed. We will need to work differently in this phase, as much on a country by country level as internationally. So with all this complexity and politics, what have we achieved so far? We’ve certainly put a lot of effort in, feeding into many of the thematic consultations and facilitating partners in taking part in some of the national consultations, with many of our country offices playing a leading role in this. We are also heavily involved in the global Beyond 2015 campaign, where I sit on the international executive committee, and which gives us improved access to the HLP (including the London, Monrovia and Bali meetings, in which we played direct roles, as well as supporting partners to actively contribute). Within these processes, we have so far made good progress in ensuring disability is on the agenda, with evidence that the UK government is now convinced data should be disaggregated by gender, age and disability, among other variables, but with disability third in the list; a good place to be. The UK government is key at present as the UK Prime Minister is currently one of three co-chairs of the HLP. We have also been influencing the debate in the media, with a number of blogs placed in a range of well-read online media on issues such as inequality, health, participation, disability and education. We are also participating strongly in the health network Action for Global Health, which is a leading civil society voice in the health sector, and are working closely with others to ensure an appropriate overall health goal replaces the current three goals. It’s probably fair to say that securing an indicator which specifically mentions eye health is a work in progress, but we are currently developing a comprehensive position on health within the post-2015 context and this will be a significant step forwards, putting us in a better position to successfully advocate for our position. So good progress made so far. But we’ve had this sort of progress before and will continue to keep the pressure on to ensure words are kept and that the final framework will reflect the aims I’ve outlined above… …And then of course, the work begins again; to ensure the goals are built into international structures and processes and national development plans, that the right resources are made available and that planned changes actually happen. A long road, but one I look forward to us taking over the next 15 years!
  • 9. Page 7 Introduction The Millennium Development Goals (MDGs) represent a concerted effort to address global poverty and some notable progress has been made since they were developed in 2000. Yet, it is common knowledge that a key weakness with the current MDGs has been a comparative failure to reach specific vulnerable groups, including people with disabilities. As noted by the United Nations Report, “the most pressing issue faced by persons with disabilities is not their specific disability, but rather their lack of equitable access to resources and services such as education, employment, health care and social and legal support systems”1 . This exclusion has resulted in people with disabilities having disproportionately high levels of poverty2 . The new post-2015 development framework is an opportunity to avoid a repeat of the failures of the current MDGs, and our aim at Sightsavers is to see a post-2015 process that tackles inequality and is inclusive of the world’s one billion disabled people. The UN Secretary General has stipulated that “the post-2015 development framework is likely to have best development impact if it emerges from an inclusive, open and transparent process with multi-stakeholder participation.”3 Sightsavers has taken this opportunity of the UN’s commitment to an inclusive post-2015 process to ensure the voices of our partners, especially blind and disabled peoples’ organisations (BPOs and DPOs), are articulated in the process. Our engagement with the process has transcended the international to the national level. This is crucial as it is at the national level where we have links with the DPOs and BPOs whose voices we would like to see articulated in the post-2015 process. As an organisation, our messages are the same at the international, regional and national levels. We believe it is time to ensure that people with disabilities are specifically included in the process and outcomes of the post-2015 agenda. Our recommendations are that the post-2015 process and framework should: v Ensure the full and equal participation of people with disabilities. v Promote disability-inclusive development by ensuring disability is a cross-cutting theme in all development goals. There should be disability, age, and gender-specific targets and indicators of progress for each goal and data should be disaggregated in the design, implementation, monitoring and evaluation of programmes. v Ensure a clear focus on equality, equity and non-discrimination, drawing on the fundamental values of the UN Convention on the Rights of Persons with Disabilities. v Ensure the most excluded children, including those with disabilities, are given a quality education. v Build on the progress made in the current MDGs by including at least one goal on health. The health goal should create opportunities to ensure the improvement of people’s health, promote health equity through universal health coverage, strengthen health systems, include NTDs and address the social determinants of health. Amplifying the voices of people with disabilities: Sightsavers’ engagement with the post-2015 process at country level Virginia Kamowa, Global Advocacy Coordinator 1 United Nations (2011), Disability and the Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts. 2 Ibid. 3 United Nations Secretary General’s Annual Report (2011), Accelerating progress towards the Millennium Development Goals: options for sustained and inclusive growth and issues for advancing the United Nations development agenda beyond 2015.
  • 10. www.sightsavers.orgPage 8 Engaging with the post-2015 process at country level Much of our national level engagement with the post-2015 process has been through supporting partner organisations to advocate on their own or jointly with us, or sometimes advocating alone as Sightsavers. Our country teams have been involved with post-2015 initiatives taking place at the national level, as well as contributing to Sightsavers’ international post-2015 influencing activities. These have included participating in UN- led country consultations;4 contributing to UN thematic consultations on inequalities, health, education and water and sanitation; involvement with internal Sightsavers’ post- 2015 working groups; and engaging with the High Level Panel of Eminent Persons on the Post-2015 Development Agenda (HLP). Case Study Engaging with post-2015 in Kenya In Kenya, Sightsavers, in collaboration with the Ecumenical Disability Advocates Network, held two post-2015 workshops for people with disabilities between December 2012 and January 2013. The initial workshop had 15 attendees and was aimed at planning how to engage people with disabilities in influencing the post-2015 agenda. The second workshop, with 70 participants (50 percent from rural areas), aimed at ensuring the national process in Kenya was extensively consultative and took into account as many divergent views and inputs as possible. By the end of the deliberations, it was agreed that the post- 2015 process should be inclusive of priorities from the disability sector. The workshop made recommendations for each of the nine post-2015 UN consultation themes to inform the consultation process. For example, the following recommendations were made under the inequalities, health and education themes: Inequalities: Require government to ensure inclusion of people with disabilities in governance processes and leadership at all levels. Health: Call on all governments to develop national health schemes that ensure children and adults with disabilities access appropriate and highest standards of health care services. Education: Require all governments to develop and operationalise effective and equal access for all children with disabilities to education opportunities at all levels (primary, secondary, tertiary, vocational, formal and non-formal education). The workshop emphasised the need for consistent engagement in post-2015 deliberations by the disability sector at local, national, regional and international levels. At the national level, a disability sector working group was appointed, with a mandate to follow up the workshop recommendations and to continue raising awareness on the need for engagement and participation at all levels. At the international level, the recommendations from Kenya will be followed through to ensure that they are included in the HLP report and in the post- 2015 summit to take place in New York in September 2013. However, having realised the information gap that had existed on the part of the national disability sector in Kenya, the workshop resolved that there is a need to raise awareness beyond Kenyan boarders. It was therefore recommended that a regional conference should be organised to bring together the disability movement in a similar exercise, not later than the end of May 2013, possibly in Addis Ababa. At the Kenya consultation meeting ©Sightsavers 4 We have participated in the following country consultations: Malawi, Ghana, Tanzania, Liberia, Cameroon, Kenya and India
  • 11. Page 9 Involvement with the UN-led post-2015 country consultations The UN-led post-2015 country consultations aimed to bring out the voice of civil society on what they felt should follow the current MDGs. Sightsavers worked to ensure that our BPO and DPO partners were part of this process. However, we realised that, in order for us and our partners to effectively engage, we needed to be clear about the process and how we can influence it. Hence, an advocacy toolkit was developed to guide our involvement at country level. Some representatives of country and regional teams (South Asia, Pakistan, Malawi and Cameroon) provided input to the development of this tool in an effort to ensure that it is user friendly and practical.5 In order to register meaningful participation in the country consultations, well thought through preparations were nessesary. Through our interactions with partners at the country level, we discovered that many were not well informed about the post-2015 process, let alone impending country consultations and how they could influence them. Therefore, one of the main ways in which we engaged with the process in some countries, for example Malawi and Kenya, was to mobilise our DPO and BPO partners to provide the required information as well as prepare for engagement with the process. It is for this reason that Sightsavers organised and facilitated pre-consultation workshops. These workshops were deemed very useful and not only informed partners about the process, but allowed partners with diverse voices to reach some kind of common understanding about key issues for influence. The ultimate aim of our engagement with country consultation processes is to see our priorities specifically included in consultation outcomes and the overall post-2015 agenda. As these processes are currently continuing, we do not yet know if we have achieved this aim. However, even at this stage, Sightsavers and our partners at country level are delighted that we have managed to engage with this important development process and had a chance to articulate our priorities. Thematic consultations As disability is a cross-cutting issue, we have ensured that we introduce it in all relevant post-2015 thematic consultations, including those on inequality, education and health. Country representatives have contributed to Sightsavers’ global responses and contributions to thematic consultations. Additionally there have been instances where country teams have directly engaged with thematic consultations taking place in their own countries and beyond. For example, in December 2012, Sightsavers’ Tanzania country office participated in a civil society stakeholder health consultation organised by Action for Global Health, which was part of the UN thematic consultation on post-MDGs. At the end of the workshop, Sightsavers’ asks on health and disabilities formed part of the priority list of issues to be considered in the post-2015 agenda. A Sightsavers representative was also featured in the workshop output video clip, articulating Sightsavers’ priorities for the agenda. The workshop outcomes fed into the High Level Dialogue on Health in the Post-2015 Development Agenda in Botswana (March 2013), which brought together high level participants including Ministers of Health; members of the High Level Panel of Eminent Persons and their representatives; heads of international organisations; representatives from civil society and the private sector; academics; public health experts; and youth. In turn the outcomes of this meeting informed the final report of the Health Thematic Consultations. Engagement with internal Sightsavers working groups It is our desire that all advocacy work undertaken across the organisation is joined up and contributes to achieving our overall advocacy objectives. The post-2015 influencing work is no exception; our national and sub- national level experiences inform our advocacy work at regional and international levels. Hence, we ensure that we involve country teams in international advocacy initiatives. Our working groups on post-2015 influencing have representation from country teams and their engagement has been a valuable contribution in framing our post-2015 influencing messages and strategies. A specific country engagement working group was created to help spearhead Sightsavers’ country engagement with the post-2015 process. This group is instrumental in ensuring 5 The advocacy toolkit is an internal Sightsavers guide to help country teams efficiently engage with the UN process on the post 2015 agenda through mobilising and coordinating BPOs/DPOs, like-minded organisations and other partners and stakeholders’ input into the process.
  • 12. www.sightsavers.orgPage 10 that country offices are actively involved with the post-2015 process, but also that they have the right guidelines and tools to advocate with. Countries representatives from Kenya, Malawi, Pakistan, Bangladesh, Cameroon and Sri Lanka have been actively involved in ensuring the group’s objectives are effectively met. It is through this group that Sightsavers’ international level initiatives and all relevant information has been disseminated to the country level. This is also the group behind the development of Sightsavers’ advocacy tool (described above) to guide country engagement with the post-2015 process.6 Engaging with the High Level Panel The UN Secretary General appointed a High Level Panel of Eminent Persons to advise on the global development agenda beyond 2015. In line with the UN’s quest for a transparent and inclusive post-2015 process, the HLP has held three consultation meetings with various stakeholders in London (November 2012), Monrovia (January 2013) and Bali (March 2013). At the international level, Sightsavers engaged with all these processes to ensure our priorities are articulated and included. At the national level, our Liberia country office and partners engaged directly with the Monrovia HLP meeting. Sightavers’ Liberia Country Director and the President of the National Union of Organizations of the Disabled (NUOD) participated in civil society consultation sessions as well as engaging directly with HLP members. They engaged with the specific ageing and disability roundtable which was an opportunity to share post-2015 aspirations directly with HLP members. It was because of these engagements and deliberations (by Sightsavers and others) that some HLP members, including President Johnson Sirleaf of Liberia (HLP co-chair), specifically mentioned disability as an important issue to focus on in the post-2015 process. Prior to the HLP consultations in Liberia, Sightsavers, together with the National Commission of Disability (NCD) and NUOD, organised regional and national pre- consultation workshops in the country. The aim was to mobilise the disability fraternity in Liberia to ensure that their voices are brought to the HLP and that they are included in shaping the post-2015 agenda. The pre- consultation outcomes were collated into a one pager of aspirations, which were fed into the Monrovia HLP process by the two disability representatives involved with the deliberations.7 The pre-consultation workshops provided a rare opportunity for DPOs and BPOs to deliberate on the future they want. However, as workshops such as this occur so seldom, they came with their own complexities. As would be expected, DPOs and BPOs are not homogenous, but diverse organisations with varying and competing needs. This created some tensions among the DPOs and BPOs themselves during the deliberations and Sightsavers, together with NCD and NUOD, played an additional role of promoting dialogue and coherence among the individuals and organisations. It was clear during the deliberations that some sort of unity is important if DPOs are to effectively influence the process. Lessons learnt and challenges Access to processes by the most excluded Despite the intention by the UN to open up the post-2015 consultation process, the reality is that there is still a high likelihood of exclusion of the most marginalised and excluded groups, including people with disabilities. For instance, the post-2015 process, including the HLPs, has been very fast paced. Information about what is happening, and when and how one can engage, has come out mostly at the last minute making it very difficult for all to engage as expected. If the processes have been difficult to reach by individuals with connections to international organisations and offices fitted with unlimited internet access and phones, what about those individuals coming from the least developed parts of the world with no access to modern technology? In other words, even though efforts have been made to make the process accessible by all, including the poorest, the same process has fallen short of employing mechanisms to ensure that it is inclusive enough. I would therefore hope that, going forward, measures will be put in place to ensure a more inclusive and accessible process. On our part, we have to be proactive to ensure that we utilise all influencing 6 If you would like a copy of the Sightsavers advocacy tool, please contact vkamowa@sightsavers.org 7 Sightsavers supported the President of NUOD to participate in the Liberia HLP deliberations including being represented on the Disability and Ageing roundtable.
  • 13. Page 11 opportunities available and also create spaces for our partners to engage. Information Information about the post-2015 process is vital if one is to engage with the process and influence effectively. However, different DPO/BPO partners, as well as country teams, are at different levels in terms of their knowledge about the process. It is for this reason that Sightsavers at the international level has provided information about relevant consultations and processes to its country teams, who have in turn been instrumental in ensuring that this is shared with partners. For example, it was discovered during the pre-HLP disability consultation workshops in Liberia, that most partners would have been in the dark about the process had it not been for the information provided by Sightsavers. It is very important, therefore, for Sightsavers, and all other organisations with easier access to the post-2015 process, to disseminate information in accessible formats to as many partners as possible. Facilitation and coordination skills DPOs and BPOs are not homogenous, but diverse organisations with varying needs. Therefore, precautions must be taken during consultation workshops and deliberations to ensure that diversity does not lead to conflict. Through our engagements at country level, we have learnt that good facilitation skills and allowing enough time for deliberations have helped to contain conflict and competition among partners. Steps forward and steps back Our experience has taught us that the post- 2015 process has comprised of taking steps forward and then steps back. The process has allowed us and our DPO and BPO partners to articulate our point of view and it has also been very pleasing that, on many occasions, individual members of the HLP have mentioned disability as an issue that requires specific focus in the post-2015 agenda. However, these outcomes in themselves are not enough; our main goal is to see a post- 2015 framework that includes our priorities. It has therefore been disappointing, for example, to see the HLP communiques from both Monrovia and Bali exclude disability, despite promises made. Going forward, our quest for a disability inclusive post-2015 framework will continue and we will proactively question any lack of inclusion of our priorities at all levels of the process. Conclusion Country engagement with the post-2015 process is very important for us. It is at the country level where we have links with the very people whose inclusion in the post-2015 development agenda we so much aspire to. So far, we have made some positive strides, but still there is more work to be done to ensure that disability voices from the grassroots are included in the post-2015 agenda. Opportunities are still available for our country teams and partners to continue influencing the process. At the international level, the Conference of States Parties (taking place in July 2013), the UN High Level Meeting on Disability and Development, the UN MDG review meeting, and the UN General Assembly (all taking place in September 2013) are all post-2015 processes that we are striving to influence. The UN General Assembly is when the UN Secretary General will present his report on the post-2015 development agenda, with recommendations for what the framework should look like. Thereafter, inter-governmental post-2015 processes will start. Our country level engagement at this stage will be very significant if we are to ensure explicit inclusion of the voices of people with disabilities. As an organisation, we will not rest until the post- 2015 framework includes priorities of people with disabilities that will be implementable and measured through disaggregated data.
  • 14. www.sightsavers.orgPage 12 Positioning disability in the centre stage of inequality: a southern perspective to post-2015 Akbar Mehfuz Alam, Senior Programme Officer, North East India Sudipta Mohanty, Programme Manager, North East India Introduction The current Millennium Development Goals (MDGs) are widely recognised for their contribution to global development; to reducing hunger, improving nutrition, uplifting women’s status and bringing consciousness to environmental issues. There is also wide acknowledgement that the current MDGs have helped to define policies and programmes at national and international level, providing a framework for countries, leaders and donor agencies to design development approaches in a more strategic way. Global partnerships between countries dealing with issues of poverty reduction and human development have also been enhanced by the MDG framework. However, the current goals are due to expire in 2015 and the global search for a new development framework has gained massive momentum across world development discourse. A widely held critique of the current MDGs is that they were developed largely by United Nations (UN) officials, without the participation of the people most affected by the issues that the goals sought to address. The process was a predominantly north- centered one, which resulted in the MDG framework being levied on the south without their involvement and ownership. Issues such as inequality were not adequately captured in the framework and the needs of people with disabilities and other marginalised groups were not fully addressed. The development of a new framework to succeed the MDGs is an opportunity to rectify this inequity, and southern civil society organisations (CSOs) ©Sightsavers Post-2015 orientation for grassroots disability leaders
  • 15. Page 13 are demanding their participation and ownership as key non-negotiable points in this process. The UN has launched a number of strategic initiatives to enable wide reaching consultations on the post-2015 agenda and CSOs around the globe are forming networks and alliances in order to engage with these processes and campaign for the inclusion of their respective development priorities. This article will explore the ‘southern perspective’ further and look specifically at how Sightsavers’ India offices have engaged fully with the post-2015 discourse across its length and breadth. Working closely with national and international organisations, civil society alliances, blind and disabled people’s organisations (BPOs/DPOs) and partners, we are seeking to highlight the issues facing people with disabilities and place them at the centre of the inequality agenda, which is recognised not only in India, but throughout countries in the south. The rise of the south and its influence on post-2015 The recent economic fallout in the north and the simultaneous economic emergence of the south has created a new global dividend in terms of power and influence in the southern world. The southern country groups like BRICS1 and SAARC2 are expected to play a major role in the next world development framework, as these countries are not only host to large world populations, but represent areas of significant global poverty and inequality. For example, of the total number of people with disabilities in the world, 80 percent live in developing countries. Therefore, unlike the current MDGs which were mostly influenced by the global north, the global south is emerging as a strong force to claim their potential stake in the development of the post- MDG framework. Voices from India; a southern perspective on inequality In the southern world, the post-2015 discourse is quickly gaining momentum and this is particularly true in India, due to its strong civil society organisations and networks working on development issues. India has a population of more than a billion people, including 70 million people with disabilities (based on the projections made by many international agencies like the World Bank3 , the World Health Organization and the UN4 ). It is also host to one third of the world’s poor people amidst half of the world’s dollar billionaires. This growing inequality in the country is recognised as a major barrier to progress on the MDGs and has been given special importance in the post-2015 dialogue in India. A civil society consultation, held in New Delhi in December 2012, strongly voiced the inequalities faced by poor people, including people with disabilities, older people, indigenous people, women and girls. It concluded that inequality is the biggest hurdle to poverty reduction and recognised poverty and inequality as top agenda priorities for civil society engagement in post-2015. There was demand that the experiences and expectations of communities themselves should inform the post-2015 process, so that a pro-poor development architecture is built, whereby all vulnerable groups are given due attention and it becomes a global responsibility to deal with issues of inequality. This essentially means the full participation of community groups and organisations, the inclusion of their voices and campaigns, and ultimately their total ownership of their own development agenda. Sightsavers’ post-2015 engagement in India To achieve the aims described above, Sightsavers has adopted a multilateral engagement in influencing the post-2015 dialogue in India. At the national level, Sightsavers has been engaged with leading CSOs, national level coalitions and other international agencies working on post- 2015. At the same time, we are also working with partner organisations and with DPOs and BPOs across the country to bring the issues facing people with disabilities to the forefront of the inequality agenda. In this context, Sightsavers has adopted the following key strategies to inform the post-MDG development processes in the country: 1 BRICS- Brazil, Russia, India, China & South Africa 2 SAARC- South Asian Association for Regional Cooperation 3 People with Disabilities in India: From Commitments to Outcomes 4 Fact sheet on persons with disabilities. http://www.un.org/disabilities/documents/toolaction/pwdfs.pdf
  • 16. www.sightsavers.orgPage 14 Working with partners Sightsavers works with approximately 100 NGO partners across India, providing a strong platform to ensure that disability takes centre stage in the wider post-2015 discussions. Partner events have been conducted to orient partners on the processes for influencing the post-2015 agenda, and on how disability can be included in the new development framework. Partners have also been involved in the design of strategies to engage communities and people with disabilities at the grassroots level, and have been developed as resource agencies for other smaller organisations in their area. These engagements with partners have helped to mobilise both large and small CSOs on the importance on highlighting disability and inequality issues in post-2015 dialogues. Generating community development agreements The hopes and aspirations of communities and affected groups are always critical to discussions on inequality. With the support of partner organisations, community-level awareness programmes are being undertaken in Sightsavers’ projects to inform people with disabilities and the wider community about post-2015. Campaigns are being organised at village and block level on the issues of marginalisation and inequality, with DPOs and BPOs taking the lead at block and district level. Their leaders are actively participating in post- 2015 meetings and workshops organised by other groups and coalitions, with the goal of mobilising civil society consensus on the key issues. Creating a platform for the voices of inequality A common platform is essential for any social movement to showcase its potential and its collective response to an issue. It is in this light that Sightsavers, through our partners, is creating different platforms and opportunities for post-2015 dialogue and engagement. At state and regional levels, meetings and workshops have been organised involving disabled people’s groups and their leaders. During these meetings, the DPOs and BPOs discussed and generated their draft post-2015 development framework resolutions, which will be collated for presentation to decision- makers at state and national level meetings on post-2015. Undertaking relevant research and evidence gathering At the project level, research and evidence is being generated to substantiate the dialogue on inequality, with situation analysis reports and case studies on the inequalities faced by people with disabilities being developed to critically inform the post-2015 campaigns. Media campaigns will also be undertaken to share this evidence and raise awareness of the exclusion of people with disabilities in the current MDGs and the need for their visible representation in the next world development goals. Working with the state actors Sightsavers is also engaged with key government players to demand adequate representation of disability in the post-MDG development framework. In India, Sightsavers is working closely with the National Disability Commissioner, State Disability Commissioners, the Department of Welfare, the Department of Disability Affairs and other government agencies to build a common consensus on this issue. Working with national level coalitions Sightsavers has taken a twin track approach to working with national coalitions on the post- 2015 agenda. On the one hand, Sightsavers is part of a coalition formed by national level organisations working on multilateral development issues, and on the other, we are forming an alliance with national level DPOs and disability rights groups to campaign and engage with post-2015. Through this strategy, we aim to not only mainstream the voice of people with disabilities in the dialogue of wider development organisations, but also to bring about a unified and harmonious campaign within disabled people’s groups. In addition, Sightsavers is also actively contributing to national and global level dialogues on post-MDGs. The civil society consultation held in New Delhi in December 2012 recognised inequality as a major cross-cutting issue in development, and this consultation was followed by an international meeting in the national capital, which involved all major UN agencies and international organisations.
  • 17. Page 15 Righting the development goals The consultations from India emphasise that the next set of development goals should be based on the principles of human rights and values, and that citizens hold the right to development, which the state delivers as a guardian. A key learning emerging from the current MDGs is that the new development goals should not be seen just as a target for the nation, but as a duty-responsibility that the state must deliver for its citizens. Rights-based groups in India have therefore demanded that the next development goals should be legalised, with states being required to define their commitments in terms of legislative measures, policies and resource allocations. DPOs and BPOs have leant their voice to this demand, believing that it will provide more scope for the realisation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The post-2015 process provides a momentous opportunity to harmonise the UNCRPD with the new development goals and will also promote greater global partnership between developed, developing and underdeveloped states, going beyond bilateral interests. The candidate goals from a southern perspective Various research findings have proved that the current MDGs did not include people with disabilities in a significant manner and, as a result, they have been excluded from advances in development during the first decade of the 21st century. Their exclusion, in itself, has also hindered progress towards achievement of the MDGs. For example, one third of the 72 million children currently out of school are disabled, equating to 90 percent of children with disabilities in developing countries not attending school5 . Similarly, of the total disabled population in developing countries, 82 percent live below the poverty line6 . The statistics clearly spell out that people with disabilities are not merely an invisible minority, but a significant population who have been hijacked by political and development processes that do not recognise or prioritise their needs. The post-2015 agenda is therefore an historic opportunity to not only multiply the strengths of the current MDGs, but also to correct the errors, exceptions and exclusions, and to include the 500 million7 people with disabilities who mostly live in poverty without access to information, education, employment or health care. 5 UNESCO, Children with Disabilities 6 ILO, 2009 7 http://www.un.org/esa/socdev/enable/diswpa04.htm ©Sightsavers Meeting with our partners to discuss post-2015
  • 18. www.sightsavers.orgPage 16 The post-2015 chapter in India has called strongly for what it terms ‘disability inclusive Sustainable Development Goals’ with clear targets and accountability mechanisms. Some of the candidate goals, collated through various consultations with disabled people’s groups, are as follows: By the end of the first quarter of the 21st century, we will: Goal 1: eradicate extreme poverty among people with disabilities and reduce relative poverty through inclusive growth and employment Goal 2: ensure universal access to sustainable food, water and sanitation for all, including people with disabilities who are most neglected Goal 3: end preventable child and maternal mortality and provide basic health care for all, including people with disabilities Goal 4: ensure children with disabilities everywhere receive quality education and have good learning outcomes Goal 5: ensure responsible and sustainable business that adequately accounts for people with disabilities and their representation Goal 6: ensure that governance is more open, accountable and inclusive to all, including people with disabilities Goal 7: establish effective global partnerships for responsive and inclusive development Goal 9: ensure a sustainable, healthy and resilient environment for all Goal 10: ensure gender equality with special attention to women with disabilities and other vulnerable groups Conclusion Within India, and especially within Indian CSOs, there is a growing consensus that inequality is the biggest hurdle to poverty elimination, and that poverty and inequality are the priority agenda for civil society engagement in post- 2015 dialogues. In the case of people with disabilities, inequality has the most devastating consequences as it is rooted in their history and their political and cultural nomenclature, which has manifested over the years in economic deprivation, social exclusion and isolation. The post-2015 agenda represents an opportunity to address these injustices, and vulnerable groups, including people with disabilities and their representative organisations, have started collating their voices and campaigns against inequality. From the southern perspective, the role of the state is critical in the delivery of development goals and, in particular, it is essential that the state looks after the interests of poor people, small producers, people with disabilities and the marginalised. State responsibilities must, therefore, be well accounted for in the post- MDG framework, ensuring that the next set of development goals don’t depend too much on big corporations, charities, wealthy individuals or aid agencies. The post-2015 agenda represents a huge opportunity to reconfigure the current MDGs to accommodate and prioritise voices from the south. This simply means that nobody holds a ‘remote control’ to guide the next world development framework, but that everybody and every nation must be provided with adequate space and responsibilities to shape the world they want.
  • 19. Page 17 Health in the post-2015 agenda Juliet Milgate, Acting Head of Policy This is Jesse Antwi Agyeman from Koforidua, Ghana. He is six years old and has suspected childhood cataract. For Jesse and most children of his age the current international discussions about what replaces the Millennium Development Goals (MDGs) after 2015 are a million miles away from his daily life, play, school and family. Background But it’s precisely because of children like Jesse that we should be and are engaging in these critical international processes and working to improve the education, inclusion, participation and health of millions like him. The MDGs have framed international development since 2000, galvanising popular support and directing political attention, resources and policy around health, child mortality, primary education, extreme poverty and hunger, gender, global partnerships and environmental sustainability. In health, significant gains have been achieved under the MDGs: under-five mortality declined by 35 percent from 1990 to 2010 and over the same period childhood malnutrition, a risk factor for poor eye health and disability, fell from an estimated 88 deaths per 1000 live births to 57. Substantial progress has also been made in reducing maternal mortality and reducing morbidity and mortality due to HIV infection, TB and malaria. On neglected tropical diseases (NTDs), the World Health Organization (WHO) reports that it has reached a turning point in its efforts to overcome these diseases thanks to a coordinated and integrated approach adopted since 20071 . However, the MDGs were only set for a period ©ZulMukhida/Sightsavers Jesse is fitted for dark glasses to protect his eyes from dust and sunlight 1 WHO (2012) Monitoring the achievement of the health-related Millennium Development Goals (A65/14).
  • 20. www.sightsavers.orgPage 18 of 15 years, and in 2015, they will expire. Broad international consensus is that they should be replaced with a new development framework – but the question is, what should that new framework look like and what issues should it address? And so the bargaining begins… The current process Although the MDGs targeted health, development and other policies in developing countries, they were actually formulated in 2000 with surprisingly little consultation with developing country governments, let alone civil society, communities and households, resulting in a framework that didn’t fully reflect people’s needs. As a consequence, this time around, the process is all about consultation and Sightsavers has been engaged in the range of processes almost from day one. For eye health and health, this means participation in global meetings at the WHO and the health systems symposium in Beijing last November, contributing to a range of multilateral processes, including the UN thematic consultation on health and the development of an EU common position on post-2015, as well as numerous contributions and submissions of papers to civil society consultations (such as BOND and Action for Global Health in the UK, Concord at EU level and Beyond-2015, the global campaign aimed at influencing the new framework and civil society meetings). At country level we’ve supported national-level participatory processes by providing briefings. But the reality is that we are only at the beginning. Between now and 2015 the debate will continue. So what is Sightsavers calling for in this new development agenda? The inclusion of health and water, no less! Firstly, that there is a clear health goal. That may sound a little too obvious, but it is by no means certain that health will feature prominently in the post-2015 agenda. If we are to safeguard the eye health and health of children like Jesse, then health and wellbeing must be at the heart of any new development framework. Good health is a pre-condition for sustainable development, the outcome of sustainable development and an indicator of what people-centred, rights-based, inclusive and equitable development seeks to achieve. This inclusion of health is closely and inextricably linked to the need for a goal on access to water and sanitation. In our view, we cannot have one without the other. Evidence suggests that progress on WASH and other social determinants of health has been hugely uneven. We are calling for a new framework that integrates water, sanitation and hygiene (WASH) and other components of the social determinants of health (people’s living conditions including employment, housing and income) into the health agenda. Secondly, investment in health systems is critical. If we are to improve people’s eye health, secure access to essential, sustainable NTD interventions, and improve the health and well-being of all people, including people with disabilities, then we need effective, functioning health systems that can deliver quality, safe and responsive eye health and health services. The truth is that without urgent improvements in the performance of health systems, the current, let alone the next MDGs (or whatever they’re called), will not be met. Action to address health inequity through Universal Health Coverage Thirdly, we need to address inequities. Health inequities are those unfair and avoidable differences in health and health service provision that arise from socioeconomic factors, such as level of education, occupation, and household wealth or income; from geographical location; and from ethnicity, gender and disability. This is why Sightsavers is lobbying for the inclusion of Universal Health Coverage (UHC) in the new framework. UHC is a “system in which everyone in a society can get the health care they need without having to incur financial hardship2 ”. It covers the range of services available to people, which from Sightsavers’ perspective must include access at primary health care level to services which include eye health care and NTDs; the coverage of those services, specifically aimed at targeted populations such as the poorest and most vulnerable; and social protection, aimed at protecting people from catastrophic health expenditure. UHC and the strong health systems needed to deliver it won’t reduce health inequities overnight; it is a progressive 2 WHO (2010) World Health Report 2010 Health Systems Financing The Path to Universal Coverage
  • 21. Page 19 agenda that will take governments many years to achieve, but it is a cornerstone of reducing health inequities. If we are to reduce inequities – including those in health – then health systems will have to play a critical role. Eye health and NTDs Next, we are calling for eye health to be deemed a priority health issue for the 15 years after 2015. This is more challenging for us to achieve; at present the negotiations commonly reflect a long list of health issues, with campaigners arguing for the inclusion of this condition over that. In making the case for eye health we are seeking to demonstrate not only the critical health impact of eye health, but the economic impact also. What we do know is that non-communicable diseases are likely to feature significantly in the new framework and, if that is the eventual outcome, Sightsavers will be advocating at national level for governments to take action to ensure that eye health is included within non-communicable disease prevention, treatment and control strategies, as well as within national health and development policies. Lastly of course we are advocating for a strengthened political focus on neglected tropical diseases, which affect one billion of the world’s poorest people, so that we can sustain the impressive health gains to date in NTDs. There are clear targets for the control, elimination and eradication of NTDs set out in the WHO Roadmap for NTDs: Accelerating work to overcome the global impact of NTDs3 and we are calling for these goals to be incorporated into a post-2015 framework. Here again lies a challenge for us; although significant progress has been made in NTDs under the current MDG agenda, much of this led by WHO in more recent years, NTDs were not explicitly highlighted in the goals or associated targets and indicators. We are working to turn this tide, but the critical point for us is that people’s health is protected and safeguarded on a life-long basis. What have we learned? In this crowded international arena on advocacy, it is critical that Sightsavers’ messages are clear, easy to understand and put the people we work with, our beneficiaries like Jesse, first. A key challenge in working on post-2015 is that there are so many different processes, forums, consultation exercises, meetings and network opportunities, that keeping up to date with the processes, let alone participating in them, is immensely challenging. A key learning from this is the importance of being strategic. Of understanding where Sightsavers’ value added is and building on that strength. For Sightsavers in health that means advocating on issues where we have clear experience and knowledge such as in disability, equity, NTDs, water and sanitation, eye health and health systems. 3 http://www.who.int/neglected_diseases/NTD_RoadMap_2012_Fullversion.pdf ©ZulMukhida/Sightsavers Jesse having his eyes examined by Dr James Addy
  • 22. www.sightsavers.orgPage 20 Where are we now? At the end of April the United Nations published the outcome of its global consultation on health4 entitled Health in the Post-2015 Agenda. Specifically on a health goal, it recommends that the post-2015 health agenda should: include specific health-related targets as part of other development sector goals; take a holistic, life-course approach to people’s health; accelerate progress where MDG targets have not been achieved; and address the growing burden of non- communicable diseases (NCDs), mental illness, and other emerging health challenges. From Sightsavers’ perspective, this potential inclusion of NCDs in the post-2015 agenda could offer us important opportunities for discussing eye health at national level, not to mention of course, disability. The paper also supports the inclusion of UHC and the need to strengthen health systems, which is positive for Sightsavers. The High Level Panel report In May the High Level Panel of Eminent Persons published its report on the post-2015 development agenda. The HLP proposed five ‘transformational shifts’ to drive the post- 2015 agenda. The first of these “leave no one behind” says that “the next development agenda must ensure that in the future neither income nor gender, nor ethnicity, nor disability, nor geography, will determine whether a mother can give birth safely, or whether a child has a fair chance in life”. The report represents a significant step forward for the inclusion of disability and extensively cites people with disabilities, for example by recognising people with disabilities at all levels of society and implementing laws and policies protecting human rights. It also highlights the importance of data in the new framework and calls for a data revolution. For Sightsavers, this point is crucial - if we are to achieve inclusion and the participation of people with disabilities in the new development agenda (be it in eye health or health, education or social inclusion) then we need effective ways of measuring and monitoring progress. Good data is key to this. However, we were disappointed that the HLP report did not give health systems and UHC the prominence they deserve. The fundamental problem is that quite simply health systems are just not up to the job of delivering the critical health interventions that people need. So while the report has rightly focused on areas such as NTDs (which we warmly welcomed!), maternal mortality, under-five mortality and sexual and reproductive health and rights, it has failed to make recommendations to improve the underlying structural and health systems needed to bring about these changes. It focuses on targeted interventions rather than an approach underpinned by UHC that contributes to building stronger health systems which can in turn address both morbidity and mortality. On education, the report’s recommendations for how education could feature in the post- 2015 framework are weak. Sightsavers would welcome a universal early childhood target that takes quality into account. At present, quality at the primary level only relates to literacy and numeracy in the report. While literacy and numeracy are hugely important, such an approach is too narrow. Problem-solving skills and respect for human rights should also be measured. But the broader point is that, although critical, these reports are just early milestones in the process. We will be keeping you updated on our activities, briefings and thinking. What about Jesse? So what does all of this mean for Jesse? Well the fact that this process has been consultative (although it is fair to say that some processes have been less effective than others) means that it is more likely that the needs of Jesse and his family will be more accurately represented in the post-2015 framework. It is impossible to foresee the eventual outcome, but Sightsavers will use all the mechanisms and opportunities available to us to secure an outcome that is more equitable and fair, promotes and protects good health, eye health and health systems, and works to promote the inclusion of people with disabilities and secure access to water and sanitation. There’s a long way to go, but it looks like it’s going to be an exciting time. 4 Health in the post-2015 agenda - report of the global thematic consultation on health (2013) http://www.worldwewant2015.org/health
  • 23. Page 21 Liberia: a politics of hope Adoley Sonii, Country Director, Liberia Reverend Fallah S. Boima, National Union of Organizations of the Disabled, Liberia Introduction In July 2012, the UN Secretary-General, Ban Ki- moon, appointed the Liberia leader, President Ellen Johnson Sirleaf, along with Prime Minister David Cameron of the UK and President Susilo Bamband Yudhoyono of Indonesia, as co-chairpersons of the High Level Panel of Eminent Persons (HLP). The purpose of the HLP was to make recommendations on what the development framework should look like, once the Millennium Development Goals have expired in 2015. The appointment of President Sirleaf represented a great opportunity for Sightsavers’ Liberia country office, and our partners, to engage with HLP processes. This article focuses on the various levels of that engagement and how we worked to ensure that the voices and views of people with disabilities were heard and taken on board by the HLP. Liberia’s engagement with post-2015 consultation processes Following meetings in New York and London, the third meeting of the High Level Panel was held in Monrovia in January 2013. The theme of this meeting was ‘National Building Blocks for Sustained Prosperity and Economic Transformation’. The HLP meeting itself was preceded by differing levels of consultation to gather views and input from civil society organisations (CSOs) and from people with disabilities. ©Sightsavers Sightsavers and partners engage with post-2015 in Liberia
  • 24. www.sightsavers.orgPage 22 The Monrovia HLP and CSO consultations The work of CSOs across Africa has gained significant recognition in the aim to unite and empower citizens all over the world towards equality, social justice and prosperity. They have played specific roles in making the voices of vulnerable and marginalised citizens heard loud and clear. With the meeting of the HLP in Monrovia came an opportunity for CSOs and other stakeholders to speak up and send a clear message to the HLP, with the aim of influencing its ultimate recommendations on what a post-2015 development framework should include. The meeting in Monrovia brought together 60 civil society representatives from Africa, Latin America and the Caribbean, Europe, Asia and the Arab regions. Represented amongst the global CSOs was also the National Union of Organizations of the Disabled, a Liberian civil society member organisation. The event posed a unique opportunity for these organisations to share evidence with the HLP and discuss a clear vision for the future. Prior to the HLP meeting itself, the CSOs held discussions that focused on addressing the perspectives of different marginalised groups. Emerging from these group meetings was a strategic consensus position paper, which was formally presented to President Sirleaf for and on behalf of the HLP. In response to this CSO position paper, four face to face round table meetings were held of the first day of the HLP meeting, focusing on children and youth, women and gender, people with disabilities and older people, and small businesses, farmers, traders and trade unions. These group meetings between CSO members and HLP members were interactive and very beneficial. CSO group members had the opportunity to put forth their areas of concern and raise legitimate points that need to be addressed by world leaders, as well as by concerned stakeholders. These included: v Continuous economic uncertainty and the financial crisis v Persistent and widening inequality v Rising unemployment, low wages, insecurity and unhealthy working conditions v Continuing risk and vulnerability from climate change v Persistent and new conflict The CSOs also put forth a number of recommendations aimed at improving equity, including: v Inclusive and sustainable growth and human development. v The need to address the specific needs of children and youth to participate in economic transformation and policies to provide more and better education. v Gender equality, the protection of women’s human rights (including sexual and reproductive rights) and support for women’s empowerment. v Full and equal participation of people with disabilities and older people. v Reformed labour laws and policies to ensure full and decent employment for all, including people with disabilities. HLP members had the opportunity to interact with CSO members, to listen to their questions and provide answers; they expressed equal concern in response to the CSO’s recommendations. It was an experience of stating what needs to be done and confirming the need for action to reverse the world situation for a better world. Pre-HLP regional consultations Given the importance of the opportunity represented by the HLP meeting and associated thematic consultations, our participating partner in Liberia, the National Union of Organizations of the Disabled (NUOD), sought prior input from their member organisations. In order to do this, a number of regional consultations were held in the three strategic regions of Liberia; Western, Central and South Eastern. The aim of these regional consultations was to ensure that those people living even in the most remote towns and villages could play a part in the decisions that affect their lives. That people with disabilities and other marginalised people could have the chance to contribute to decisions and strategic plans made about the development of their country. A summary of discussions and recommendations derived from each of the regional meetings was presented by regional representatives at a national level union organisation meeting. All three statements recommended that the post-2015 framework should be inclusive of people with disabilities and compliant with the UN Convention on the Rights of Persons with Disabilities (UNCRPD). They also all
  • 25. Page 23 recommended that the post-2015 sustainable development agenda must promote economic opportunities for people with disabilities and poorer people, ensuring integration of marginalised groups and communities in the production and growth process. The outcomes of these regional consultations with disabled people’s organisations (DPOs) informed NUOD’s representative, Rev Fallah S. Boima, and his engagement in the round table discussions with other global CSO members. The central message coming out loud and clear from the regions is that we must ensure that people with disabilities are not left out of the new post-2015 development framework. The HLP meeting presented a unique opportunity that united the DPOs in their discussions and encouraged them to put aside their differences and join their voices in making concrete recommendations on the post-2015 framework. What worked well with our engagement and what results did we see? Through the series of engagements described above we successfully brought together people with disabilities from three regions in Liberia and afforded them the opportunity to speak freely on critical issues. The levels of attendance and participation were impressive; the DPOs were determined to make their voices heard and spoke clearly on the issues important to them and the need for the new development framework to fully include people with disabilities. Sightsavers’ Advocacy Coordinator, Virginia Kamowa, reflecting on the Monrovia meeting in her Sightsavers’ blog1 , commented that it had been very encouraging to see a good representation of people with disabilities from around the globe, including national representatives, actively participating in the meeting deliberations. To echo Professor Gita Sen’s remarks, this just goes to show that “people with disabilities are not just vulnerable; given an opportunity they have the potential for full and meaningful participation for realising the agenda of the post-2015”. What challenges did we face and what might we do differently next time? Of particular disappointment, was the fact that disability was not included in the final civil society joint communique. Despite strenuous advocacy to include disability, the final communique called for ‘data [to be] disaggregated by age and sex’. While we were not successful in getting the communique changed, it seems we succeeded in getting our messages across in other ways. Amina Mohammed, the UN Secretary-General’s Advisor on post-2015, specifically mentioned at the ageing and disability round table that she was glad that discussions were continuing Reflections from Reverend Fallah S. Boima As head of the National Union of Organizations of the Disabled in Liberia, I led the consultations among persons with disabilities across the country. Our main focus prior to the High Level Panel meeting was to engage persons with disabilities in Liberia to find out which issues were of high importance to them and then to communicate these issues to the High Level Panel delegates. The UNCRPD describes disability as an evolving concept and the issue of disability in Liberia is also evolving. Most of the engagements in the disability community have been perceived as “first of its kind”. Never before in Liberia have persons with disabilities ever been considered as part of the community or allowed to participate in decision-making processes. We are now hopeful that, as a result of the consultations, among persons with disabilities, the post-2015 global development framework will give a high priority to disability, most especially to those in developing countries. 1 www.sightsavers.org/blogs/insights
  • 26. www.sightsavers.orgPage 24 on these two areas, and gave her support for goals that apply across gender, disability and age. In addition, despite the extensive participation of people with disabilities in the various consultations prior to the HLP, once the HLP itself began it was felt that the level of prominence given to disability as a group was less than that given to other groups. Amongst other challenges faced was the short lead time in preparing for the regional and national level consultations. Conclusion Grass roots engagement and information gathering was important and key to our successes. We learned during our regional and national consultations that people speaking directly about the issues that affect their lives is more important and more powerful than others speaking on their behalf without first hearing from them. The process of consultation that we used brought more satisfaction and sense of importance to people with disabilities. If we are to succeed in our advocacy efforts and make a difference to the lives of those we represent, other CSOs should be encouraged to fully engage our beneficiaries through effective, grass roots consultation. We need true, honest and sincere consultation with those we represent no matter who they are or where they are. Virginia Kamowa commented “In my view the Monrovia post-2015 HLP meeting has been a success. It was great to hear President Sirleaf pick out disabled people in her response to presentations made to her by different groups of civil society (disability and ageing; women and gender; children; youth; farmers, traders, informal, sector, trade unions and small businesses); she said that the High Level Panel needs to have a ‘particular emphasis on the disabled who have been marginalised all these years’”.
  • 27. Page 25 Voices of the Marginalised: the use of participatory action research to influence the post-2015 discussions Marion Steff, Policy Advisor, Social Inclusion Nusrat Zerin, Programme Officer, Bangladesh Jahangir Alam, Project Officer, Bangladesh Introduction ADD International, HelpAge International and Sightsavers are currently working with the Institute of Development Studies (IDS) to conduct a research study which will feed into the post-2015 discussions. The pilot has just been completed in Bangladesh and we are hoping to extend the study to another three countries. Its overall goal is to bring the perspectives of those who are highly marginalised, including people with disabilities, older people and people living with mental health issues, into post-2015 policy-making. The originality of the Voices study There is a growing recognition of inequalities arising from marginalisation, where those in excluded situations rarely have the opportunity for their voices to be heard. Their invisibility is exacerbated by a lack of relevant data. The Voices study aims to: v Build new evidence: The Voices of the Marginalised research study provides a real opportunity to build a body of data to ensure the needs and rights of marginalised populations are included in current and future development initiatives such as the Millennium Development Goals (MDGs) and their successor framework. In a time where governments spend important sums of money on development programmes, it is crucial to not only bridge research and policy, but also to provide concrete recommendations, based on systematic research, to improve the quality of life of the most excluded. v Use a creative and inclusive methodology: This research seeks both to understand and address the social, economic and political exclusion of people with disabilities and older people by using a systemic approach to answer the research questions. Sightsavers has been keen to ensure that people with disabilities play an active role in the study. As such, the research methodology used is called ‘Participatory Action Research’ (PAR) and it aims to break down the divide between ‘researchers’ and the ‘researched’; it is research with people, not on people. In PAR, the researchers can be individuals affected by issues identified in the study, who are in pursuit of answers to the questions and problems that touch their daily lives. The researchers Based on PAR, two types of Bangladeshi researchers have been trained to conduct the study. First, staff from national Non- Governmental Organisations (NGOs) working on ageing and disability issues have been involved. They are called peer researchers and worked to collect stories from peers to draw a picture of the challenges that national NGOs working with these groups are dealing with. Second, older people and people with disabilities from Bhasantek slum in Dhaka and villages in the district of Cox’s Bazar were contacted to see if they wanted to become community peer researchers. They are individuals in challenging situations themselves (poverty, no livelihood, little support from relatives, lack of access to health services, etc.) and are also beneficiaries of national NGOs working in ageing or disability. Upon acceptance, they have been trained to collect stories from their peers.
  • 28. www.sightsavers.orgPage 26 Learning from the Voices study The results of 140 stories are currently being analysed. While it is too early to reveal them, preliminary learning can already be shared on behalf of the researchers, as well as the staff from Sightsavers involved in the study in Bangladesh and in the UK. From the Bangladeshi researchers: what they enjoyed and gained All researchers enjoyed being involved in the whole process, from the design of the study to the elaboration of the questions, the collection of the data, and the analysis of the results. The community peer researchers 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, all researchers were unsure about what they would gain from the study, they quickly grasped that the experience could prove to be stimulating and enriching. Interestingly enough, they felt that they became more supportive and positive about disability and ageing; the community peer researchers realised that their own situation, as well as that of many other people, was not something to be ashamed of, while the peer researchers appreciated knowing more about the perspectives of colleagues they interviewed. The community peer researchers also mentioned that 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 a voice recorder, etc. Overall, all researchers felt more empowered to speak up and get involved in their respective communities, to not only share the results of the study and the experience they gained, but also to make a difference in terms of rights. From the Bangladeshi researchers: what they found difficult The community peer researchers sometimes faced challenges gathering stories due to communication 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 liked to talk directly to them. Similarly, interacting with people with hearing impairment proved to be tricky because these participants did not always use a recognised sign language where an interpreter could have facilitated the exchange. The researchers relied instead on relatives. Older people had a tendency to not want to talk about their own difficulties, but focused on the challenges of their community. They did not seem to realise that they had needs and rights too. Finally, participants’ understanding of the research study represented another challenge: some wondered why they were being asked to share their personal stories and did not see the point of the research. From Sightsavers’ staff: what we enjoyed and gained All staff enjoyed being part of the Voices of the Marginalised study. We were curious to see how IDS could involve people living in very poor conditions, who had no background in research and who were, for the most part, illiterate. We were pleasantly surprised to see how well organised training could really open up new skills and thinking for the community peer researchers. Having the researchers involved in each stage of the study proved to us that, no matter what your background or level of literacy, what is important is to be involved and to listen to the voices of everyone. This experience reinforced the idea that we need to work with people with disabilities, and not speak for them. As such, it was great to witness how the community peer researchers progressed in their thinking and how their involvement could make a difference in not only their life, but also in the lives of other people with disabilities or older people. In terms of data collection, having community peer researchers with similar backgrounds to the interviewees proved an excellent strategy for collecting real information. Interviewees felt more inclined to talk, despite sharing experiences that were often painful and difficult. In addition, coordination at the country level between ADD International, HelpAge International and Sightsavers worked really well and brought new perspectives for collaboration in the future. From Sightsavers’ staff: what we found difficult In terms of data collection, people with mental health issues were not included as much as we wanted to. The reason was that the organisations involved had less experience of working with people with mental health
  • 29. Page 27 issues, so were not able to properly direct the researchers. It was the same situation for people with multiple disabilities; the organisations were less knowledgeable about this issue and we therefore did not collect as many stories as we could have. Relative to the organisation of the study itself, staff in Bangladesh felt that they should have been more involved in decision-making, since they were the ones implementing the study on the ground. However, staff in the UK felt that they did not want to load more work on the shoulders of their colleagues in country and therefore tried to disturb them as little as possible. From this, we learnt the value of being very clear at the beginning of any project about the amount of work required, what timeframes are feasible, and how much each colleague can contribute. Staff in Bangladesh also thought the coordination of the study could have been improved through better communication between the three organisations in the UK. For instance, we all believe it would have been easier if one organisation had acted as the lead agency. In addition, various other ideas have been suggested to improve coordination if the study were to expand, such as having a research manager to be the focal point for communication, and creating a steering committee to help to take decisions on behalf of all organisations concerned. Finally, as this type of research study was a first for Sightsavers, it resulted in a great deal of work for all staff involved. Because of our lack of experience in this field, we may have not identified the best study locations to capture the learning and data that we were seeking. We could also have involved other interviewees in the study, for example people with learning difficulties, people with multiple disabilities, etc. Conclusion and next steps Overall, the Voices of the Marginalised study and the use of a PAR methodology provides Sightsavers with an excellent means to ensure that the data collected truly reflects the priorities of people with disabilities. To our knowledge, this is the first study of this kind in the field which focuses on both people with disabilities and older people. The findings should enable the United Nations, as well as other policy makers on the international and Bangladeshi scene, to have access to the latest data available. We certainly hope that the results will help pave the way for people with disabilities to achieve their potential through the application of an effective and inclusive post-2015 development framework. Still to come: v The final report ‘We can also make a difference’ will be ready in June 2013 with all the results and recommendations. It will be made available to staff of the organisations involved and a summary version shared publically. v An event will be launched to promote the findings of the study and to advocate for the inclusion of older people and people with disabilities in the post-2015 discussions and frameworks. This will most likely take place in September 2013, as a side event at the UN General Assembly. v Sightsavers and other partners are in the process of identifying further funding in order to extend the study to another three countries. v Other articles and events are planned. Follow Sightsavers’ policy blog1 and our policy twitter feed2 for more news on the Voices of the Marginalised research 1 www.sightsavers.org/blogs/insights 2 https://twitter.com/Sightsavers_Pol
  • 30. www.sightsavers.orgPage 28 Post-2015: lessons from our engagement Juliet Milgate, Acting Head of Policy Reading this collection of articles on post-2015 I have been struck by the sheer breadth and depth of Sightsavers engagement with the new development framework and the range of expertise employed by colleagues and our partners. I was particularly interested to read Akbar Mehfuz Alam and Sudpita Mohanty’s analysis of the current context and issues framing the post-2015 discussions in India, which I highly commend. The broad consensus, expressed in these articles, is that progress against the current MDGs has been uneven – both between and within countries – in areas such as health, for example, and that people with disabilities have been excluded from the benefits of the MDGs since their inception in 2000. Although significant successes have been achieved – such as the inclusion of disability in the HLP report - we must remind ourselves that there is a long way to go in the discussions and debates. It is clear to me that success in post-2015 won’t come as a result of one meeting, one consultation or one briefing, but through systematic, coordinated work from across the organisation. From us sharing our messages and enabling others to share theirs again and again and again. What is not yet clear is the extent to which the new post-2015 framework will address these inequalities and inequities, what the next framework will include and, crucially, what it will continue to exclude. So, based on our engagement to date, presented in part through these articles, what have we learned? The importance of working in partnership to deliver change These articles provide so many examples - in India, Liberia, Malawi and Kenya – of Sightsavers working within networks or in coalition with disabled people’s and blind people’s organisations to put disability, human rights, education and health on government’s agendas. Working in partnership is critical to achieving long term change, whether it be advocating for policy change, influencing programmatic change or resource allocation, or raising awareness of a particular issue. Virginia Kamowa’s article highlights the role of Sightsavers in supporting partners to engage in the post-2015 national level consultations. This demonstrates in my view our unique role as an enabler in empowering DPOs and BPOs to express their voice and share their expertise and experiences and in amplifying that voice; ensuring it is heard not just at local and national level, but at global level too, and specifically at the door of the UN. That generating evidence and knowledge is critical The Voices research project, described by Nusrat Zerin, Jahangir Alam and Marion Steff, seeks to give people with disabilities, older people and people living with mental health issues a voice in shaping future development policy through the post-2015 consultation process. Using an inclusive, participatory action research approach, the project aims to break down the barriers between ‘researchers’ and the ‘researched’. This Juliet Milgate ©Sightsavers
  • 31. Page 29 research is important because it is generating new knowledge about people’s experiences. There is insufficient research about the marginalisation and inequality experienced by people with disabilities, older people and people with mental health issues and this research is critical to building our broader knowledge base. It is our responsibility as a key partner in this research to ensure its findings are fed into the post-2015 processes as well as shared with policy and decision-makers. Getting the message right Dom Haslam’s article shines a spotlight on how the post-2015 processes over the past 12 months have been both complex and demanding - and I expect that little will change from now until 2015! Even for those of us influencing on a day-to-day basis it’s very hard to keep track of what’s happening. In this crowded advocacy space, a key lesson to be learned is the importance of ’getting the message right’. If our advocacy messages are not clear, accessible and relevant then they will not be taken into account. No matter how hard we work. The Policy and Advocacy teams have been working together to outline our positions in health, education and social inclusion; my article on health, for example, sets out our thinking on eye health and NTDs, health inequities and universal health coverage and water. Over the next few months we hope to share this thinking more widely, across Sightsavers and our partners, and would welcome your views. Identifying where opportunities exist OK, so once we have our partners, our clear evidence and our ‘right’ messages, what’s next? Well, the answer is the right opportunity. The London, Monrovia and Bali HLP meetings, the UN thematic consultations and national level consultations have all been key opportunities. But it’s not just these high profile meetings and consultations that present us with opportunities to influence the agenda; there’s a whole myriad of country-led and local processes on-going. Our role here is to look out for these opportunities and respond where we can. Virginia writes about the development of an ‘advocacy toolkit’ that has been developed to enable both Sightsavers and partners to: a) fully understand the complex country consultation processes and b) to understand how to influence them. If you wish to learn more about this toolkit and how to influence, please do not hesitate to contact either Virginia (vkamowa@sightsavers.org) or myself (jmilgate@sightsavers.org). Finally if you have any questions about post- 2015 or are attending a meeting and would like some information, please do not hesitate to contact me in the policy team. I look forward to hearing from you!
  • 32. www.sightsavers.orgPage 30www.sightsavers.org Registered charity numbers 207544 & SC038110 Sightsavers Grosvenor Hall Bolnore Road Haywards Heath West Sussex RH16 4BX UK Tel: +44 (0) 1444 446600 Fax: +44 (0) 1444 446688