Concept note on United Nations Expert Group Meeting on
Disability data and statistics, monitoring and evaluation: the way forward, a disability
inclusive development agenda towards 2015 and beyond
UNESCO Headquarters, Paris, France
(8-10 July 2014)
Presented by
Kamal Lamichhane, PhD
Research fellow, JICA Research Institute, Japan International Cooperation Agency
(JICA)
e-mail: Kamal.Lamichhane@jica.go.jp; kamalnsdn@gmail.com
1. Challenges of disability-inclusive development goals
The issues discussed in this note draw, partially, from some of the recommendations
presented in my forthcoming book to be published by the Cambridge University press.
Based on that, this paper provides a concept note on disability-inclusive development
goals with the focus on the importance of data and statistics on disability to be gathered,
managed and monitored. My forthcoming book from Cambridge University press
includes several empirical works focusing on the importance of human capital
formation, the nexus between disability, education and labor markets, together with the
association of disability and poverty in different low- and middle-income countries.
Policy interventions are necessary to bring about positive and visible changes in the
livelihoods of people with disabilities and their families so as to bring them into the
framework of inclusive development.
In recent years, social and economic inclusion has become key focus for policy
reforms, especially in developing countries. Social services such as education,
employment and health are directly related to the improvement of households’ welfare.
Hence, researchers have been investigating the conditions that are necessary to
improve the quality of social-sector services in developing countries. However, the same
is not the case in connection to disability, because, on the one hand, the discussion of
disability-inclusive development has only recently progressed to the point where it is
addressing issues of development and, on the other hand, there is a significant gap
between developed and developing countries. Researchers in developed countries have
already investigated the conditions that are necessary to improve the quality of life of
persons with disabilities. Yet in developing countries, such studies are rare, with less
than 20 percent of research on disability found in developing countries, despite the fact
that about 80 percent of the world’s population of people with disabilities live in these
countries.
Additionally, those with disabilities remain trapped in the poverty cycle precisely as
a result of the lack of effective policies and programs to develop their human capital and
increase their access to basic facilities. Poverty-reduction strategies must be made
disability-inclusive to mitigate poverty and reduce inequalities of opportunity and
assets especially in the low- and middle-income countries.
Since people with disabilities have traditionally been regarded as recipients of
charity and not of investment, policies that invest in them are generally lacking.
Particularly in developing countries, policies seeking to include people with disabilities
in the country’s mainstream economic, social and development agenda are rare.
Comprehensive social inclusion requires a multifaceted approach to policy and action in
addition to a change in social attitudes and perceptions.
Furthermore, equal opportunity and fair investment are crucial if these people are
to enjoy their lives in the same way as their counterparts without disabilities. To bring
this about, development efforts should be inclusive so as to enhance well-being for all
members of society, with particular attention to poor, vulnerable and disadvantaged
groups. The reality, however, is that, despite their importance, these issues tend not to
be carefully considered in the face of limited resources coupled with biased preferences.
The notion of inclusive development is still very much embryonic, with decision-makers
holding the view that it is something to be striven for only when bread-and-butter
issues have been addressed. Indeed, it is difficult to convince the leaders of developing
countries to consider issues of inclusion when they believe that they have more visible
problems at hand. However, there needs to be a greater awareness that development is
more easily achieved when progress is made evenly by all members of the society and
when a country efficiently utilizes its resources in a sustainable manner.
2. Some recommendations for data and statistics, monitoring and evaluation
Ongoing data collection, management and monitoring demand the review, change
and expansion so that they can exclusively cover disability. One of the major problems
in conducting research on disability in developing countries is the lack of available data.
WHO and the World Bank estimate that 15 percent of the world’s population has some
kind of disability. However, data from most developing countries reflect a much lower
level of disability. This can be attributed to several factors. Defining disability is a
complex issue in general and more so in developing countries. Due to the ambiguity and
debatable nature of disability and impairment, proper assessment of impairment is
difficult. The governments of developing countries usually lack experts in disability
issues who can provide clear guidance in designing surveys to comprehensively cover
issues of disability and accurately capture people’s impairments and difficulties. There
is thus a need to keep pushing for robust data collection as well as positive leadership to
encourage governments and agencies to identify important issues of disability in the
less-developed countries.
Scholars and researchers in disability are rarely hired in the process of designing
and implementing surveys by governments and international agencies. Thus, biases
occur in survey design, and people with moderate impairments tend to be excluded as
well. Disability-specific components are also not incorporated in questionnaires. Unless
surveys are made disability-inclusive, it is unlikely that less biased statistics on
disability will be obtained and the necessary research can be conducted. There is also a
lack of consistency in the disability prevalence rate due to the lack of standardized
measurement instruments and differences in conceptual definitions of disability among
countries.
If surveys are designed appropriately and disability-related components are
included, more precise statistics on disability would be obtained. The advancement of
empirical research in the field of disability will be impeded if we do not push forward in
making data collection itself disability-inclusive.
Additionally, there are problems in using disability in general research topics other
than those which focus on disability issues. When disability-related components are not
sufficiently covered in surveys, disability is often used as an excuse to justify why an
individual cannot or should not gain access to social services such as education or health.
Ongoing surveys and studies assume that the presence of impairment negatively
impacts on human capital formation and disability is often used as a dependent
variable to justify these claims. However, since information on disability is generally
lacking, empirical research on disability, based on current surveys, is difficult to carry
out. This dearth of credible data and empirical research accounts in part for why
disability issues generally have a low priority in the development agenda within the
policies of governments and international agencies. What I argue here is that it is of
fundamental importance to ensure that surveys by governments or international
agencies are made disability-inclusive.
Governments and international agencies should therefore develop clear guidelines
for data collection in which provisions for extensively obtaining disability-related
information are specified. The hiring of researchers involved in disability who are more
familiar with the context of low- to middle-income countries should be encouraged. As
far as possible, nationally representative surveys supported by governments or
international
agencies
should
be
made
disability-inclusive.
Disability-based
organizations at the country level should also be consulted to obtain disability-related
information while implementing local surveys. Additionally, during data collection,
enumerators and survey collectors need to be well-trained and aware of issues relating
to disability and impairments so that people with disabilities are no longer prevented
from giving information on their impairments.
2.1 Collaboration between and among individuals, agencies and academic disciplines
Another issue is the need of collaboration and cooperation between and among
researchers, academic institutions and governments for the widening of research on
disability beyond developed countries and beyond theoretical or qualitative studies.
Research on disability today requires greater empirical weight and the promotion of
a multifaceted research agenda. Disability issues are slowly gaining attention in
various fields, but their incorporation into the agenda in development policies is still in
its preliminary stages and demands immense political will for its implementation.
Emphasizing the importance of collaboration between disability studies and
economics, Matsui (2012) argues that despite disability studies being rich in content,
they have not adequately reached mainstream economists and has therefore not
sufficiently influenced economic policies. Another argument is that economists often do
not attempt to understand disability and incorporate it into their economic analysis.
There is a lack of collaboration between these disciplines, which is necessary for the
creation of social and economic policies for people with disabilities that are based on
principles of non-discrimination, equality and inclusion.
Article 31 and 32 of the convention on the rights of persons with disabilities (CRPD)
respectively emphasizes the need for data and statistics and international cooperation.
So, agencies and researchers beyond disciplinary and geographical boundaries should
come forward with joint and innovative work.
Interdisciplinary research networks can help to support knowledge creation,
sharing, translation and use among researchers, policymakers and practitioners on a
global scale, as well as improving access to knowledge for those in developing countries.
This encourages borderless dialogue and collaboration among researchers across
academic institutions, think tanks and governments, and allows the sharing of useful
findings and increases our awareness and understanding of the need for the social
inclusion and economic independence of people with disabilities.
Collaborative work among individuals, agencies and disciplines help reduce the lack
of understanding of disability issues, expands on each discipline’s strengths and bridges
the gap between disciplines. When strong and empirically founded studies and
arguments for the inclusion of people with disabilities are made, governments can be
better convinced to reflect this inclusion within their policies, to ensure that post-2015
development goals are made disability inclusive.