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30. JAHRGANG / AUSGABE 2/2019 / 30nd YEAR / ISSUE 2/2019 Behinderung und internationale Entwicklung Disability and International Development Themen: Daten und Behinderung Themes: Data and Disability
Inhalt Für blinde und sehbehinderte Menschen ist die
Zeitschrift im Internet erhältlich:
www.zeitschrift.bezev.de
Disability Data Collection: Emerging Opportunities from Recent For persons with visual impairment, an electronic
Global Initiatives version of the journal is available at
Ola Abu Alghaib/Pauline Thivillier/Gemma Cook www.zeitschrift.bezev.de
4
Redaktionsgruppe | Editorial Board
Disaggregating the Sustainable Development Goals by Disability:
Dr. Isabella Bertmann, Prof. Dr. Michael Boecker,
To Leave No One Behind
Daniel Mont Dr. Christine Moeller-Bruker, Lukas Groß,
11 Dr. Thorsten Hinz, Jana Offergeld,
Prof. Dr. Sabine Schäper, Gabriele Weigt
Comparing the Washington Group Questions and the Model
Disability Survey: A Review of Methodological Approaches to Schriftleitung | Editorship
Disability Data Collection Gabriele Weigt
Nora Ellen Groce
16 Redaktionsassistenz | Editorial Assistance
Katharina Silter
Including the Furthest Left Behind: Disability Data and the 2030 Gestaltung | Layout
Agenda for Sustainable Development Amund Schmidt
Elizabeth Lockwood/Orsolya Bartha Druck | Print
23 Druckerei Nolte, Iserlohn
Bankverbindung | Bank Details
Disability Disaggregated Data to Support Inclusive Education:
Bank für Sozialwirtschaft
Findings from the Disability Data Portal
BIC: BFSWDE33XXX
Ola Abu Alghaib/Elaine Green
28 IBAN: DE08 370 205 000 008 040 706
Bericht/Report Die Zeitschrift Behinderung und internationale
Die Titchfield-City-Gruppe Entwicklung ist eine Pubilikation des Instituts für
32 inklusive Entwicklung. Das Institut wird getragen
von Behinderung und Entwicklungszusammen-
Kurzmeldungen/Announcements
36 arbeit e.V.
The journal Disability and International Develop-
Literatur ment is a publication of the Institute for Inclusive
44 Development. The Institute is part of Disability
and Development Cooperation.
Impressum Hinweis: Für den Inhalt der Artikel sind die Autor
Innen verantwortlich. Veröffentlichte Artikel stel-
Impressum | Masthead len nicht unbedingt die Meinung der Redaktion
Behinderung und internationale Entwicklung dar. Die Veröffentlichung von Beiträgen aus der
Disability and International Development Zeitschrift in anderen Publikationen ist möglich,
wenn dies unter vollständiger Quellenangabe
Herausgeber | Editor geschieht und ein Belegexemplar übersandt wird.
Behinderung und Entwicklungszusammenarbeit e.V. Please note that the authors are responsible for
Disability and Development Cooperation the content of the articles. Published articles do
not necessarily reflect the opinion of the editorial
Anschrift | Address board. Papers published in the journal Disability
Altenessener Straße 394-398 and International Development may be reprinted
45329 Essen in other publications if correctly cited and if a
Tel.: +49 (0)201/17 89 123 copy is forwarded to the contact provided above.
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Internet: www.zeitschrift.bezev.de ISSN 2199-7306 (Internet)
2 Behinderung und internationale Entwicklung 2/2019Editorial
Liebe Leserinnen und Leser, Dear readers,
vom 24.-25. September wird zum ersten since the approval of the Agenda 2030
Mal seit Verabschiedung der Agenda 2030 there has not been a meeting of Heads of Gov-
ein Gipfel der Staats- und Regierungschefs ernment and Heads of States. The first such
stattfinden. Dabei wird Bilanz gezogen, aber meeting takes place on the 24th and 25th of
voraussichtlich auch ein Aufruf zur verstärk- September. At this meeting progress will be
ten Umsetzung der Nachhaltigkeitsziele ver- reviewed, and in all probability, an appeal for
abschiedet werden, weil bereits erkennbar stronger implementation towards the targets
ist, dass die bisherigen Anstrengungen nicht for sustainability will be agreed. Already it is
ausreichen werden, um die gesteckten Ziele recognised that the efforts made to date are
zu erreichen. not adequate to reach the agreed goals.
Mit der Agenda 2030 und dem Anspruch, The Agenda 2030 aims to ensure that no-
niemanden zurückzulassen, verbindet sich body will be left behind and demands a data
auch die Forderung nach einer Datenrevolu- revolution in order to be better able to meas-
tion, um die Fortschritte messbar und sicht- ure progress. In the past persons with disabil-
bar zu machen. In der Vergangenheit blieben ities were invisible, as they are not explicitly
Menschen mit Behinderung oft unsichtbar, da referred to in international protocols, such as
sie in internationalen Vereinbarungen, wie the Millennium Development Goals (MDGs).
z.B. den Millenniumsentwicklungszielen nicht In the MDGs there is no reference to goals in
explizit erwähnt worden waren. Dies hat sich relation to persons with disabilities. This has
mit der Agenda 2030 verändert, da Menschen changed with the Agenda 2030, now people
mit Behinderung darin nicht nur explizit er- with disabilities are specifically referenced
wähnt werden, sondern auch ein Paragraph and a paragraph is included for the disaggre-
zur Disaggregierung der Daten nach Behinde- gation of data by disability. An expert group
rung mit aufgenommen worden ist. Eine Ex- at the United Nations is actively working on
pertengruppe der Vereinten Nationen arbeitet achieving this disaggregation. Already some
daran, die Disaggregierung zu ermöglichen. of the necessary indicators have been devel-
So sind einige (aber wenige) Indikatoren der oped in relation to sustainability, more is still
Nachhaltigkeitsziele bereits mit Bezug auf to be done.
Menschen mit Behinderung aufgeschlüsselt The Agenda 2030 and the United Nations
vorhanden. Convention on the Rights of Persons with
Mit der Agenda 2030 existiert nun neben Disabilities together advance the collection
der UN-Konvention über die Rechte von Men- of relevant data on the situation of persons
schen mit Behinderung ein weiteres interna- with disabilities world-wide. This data will re-
tionales Abkommen, das zur Datenerhebung inforce the efforts to alleviate the dearth and
über die Lage von Menschen mit Behinderung lack of knowledge about the realities of life for
weltweit beiträgt. Sie stärkt die Bemühungen, persons with disabilities.
die großen Wissenslücken zur Lebenssituati- In this edition we wish to provide insight
on von Menschen mit Behinderung weltweit into the initiatives and developments that are
zu schließen. being undertaken in relation to disaggrega-
In dieser Ausgabe geben wir einen Einblick tion. We also show some exemplary approach-
in die Initiativen und Entwicklungen, die es in es that already make it possible for more spe-
diesem Bereich gibt und stellen beispielhaft cific data collection.
Ansätze vor, die bereits zur differenzierten
Datenerhebung genutzt werden können. We wish you an interesting and stimulating
read.
Wir wünschen Ihnen eine interessante und The Editorial Group
anregende Lektüre.
Ihre Redaktionsgruppe
Disability and International Development 2/2019 3Disability Data Collection: Emerging Opportunities from
Recent Global Initiatives
Ola Abu Alghaib/Pauline Thivillier/Gemma Cook
Global disability data collection has progressed in recent years, catalysed by the adoption of the UN
Convention on the Rights of Persons with Disabilities (CRPD)1 in 2006, and the 2030 Agenda for Sus-
tainable Development in 2015, which set forth explicit requirements to disaggregate data by disability.
Disability data collection is a complex and dynamic process, with multifarious challenges to its quality
and coherence. There are several measurement tools available for measuring disability, which con-
tinue to develop in response to these challenges. Subsequent to the CRPD and the 2030 Agenda, a
number of additional global initiatives have emerged to build capacity in disability data collection, the
focus of this paper. These include: the Inclusive Data Charter; commitments made at the 2018 Global
Disability Summit; capacity-building initiatives; disability mainstreaming; data sharing initiatives;
and inter-agency collaboration. These new developments are unparalleled and resoundingly positive;
however the global community must continue to recognise the complexity and importance of collect-
ing disability data, keeping it at the forefront of the development agenda, ensuring the allocation of
adequate resources to capitalise on this opportunity and to sustain improvement.
Introduction data is increasingly disaggregated by sex,
Global disability data collection has age, disability, and geographic location as
progressed considerably in recent years. well as other characteristics2.
This has been catalysed by the adoption The complexity of disability data col-
of the widely ratified UN Convention on lection is widely acknowledged. The
the Rights of Persons with Disabilities most common challenge is a lack of con-
(CRPD)1 in 2006, with Article 31 of the sistency across disability data collection
Convention explicitly outlining require- efforts. Inconsistency exists for a number
ments for data collection. As a result, sub- of reasons, not least because disabili-
sequent global frameworks such as the ty itself is a complex phenomenon, with
Sustainable Development Goals (SDGs) constant evolution of its definition and
and the Sendai Framework for Disaster understanding. Other factors include the
Risk Reduction have included explicit re- diverse contexts in which data is collect-
quirements within their indicator frame- ed, the different ways in which tools are
works to disaggregate data by disability. administered, and the variation in time
Additionally, the development of the UN available to administer questions. Fur-
Disability Inclusion Strategy (UNDIS) will ther complications include poor quali-
also play a crucial role in supporting the ty data collection and a lack of outcome
UN system to mainstream disability in- measurement in disability targeted pro-
clusion as well provide support to Mem- gramming. Compounding all of this, data
ber States in implementation of the CRPD, that is collected is not always made avail-
the SDGs and other global commitments. able, often for political reasons3, limiting
These efforts are especially important in the comprehensive central storage and
identifying those left furthest behind, as international comparison of data.
4 Behinderung und internationale Entwicklung 2/2019Disability Data Collection: Emerging Opportunities from Recent Global Initiatives
There are several tools available for measuring dis- early stages of implementation, they provide signifi-
ability, with ongoing debate over which are best suited cant and unprecedented opportunity.
to which context. The two main global disability meas-
urement methodologies are the Washington Group Recent Commitments to Disability
Questions and the Model Disability Survey, most fre- Data Collection
quently endorsed and recommended in internation- In addition to the general requirement to collect
al guidelines, and the most commonly applied in the disability stipulated by the SDGs and the CRPD, some
international context. They are underpinned by the organisations have made explicit commitments to col-
World Health Organisation’s theory of disability and lect and monitor against disability disaggregated data.
the International Classification of Functioning, Disa- The Charter on Inclusion of Persons with Disabilities
bility and Health (ICF) framework. This is recognised in Humanitarian Action which states the obligation
as an ongoing area for investigation and improvement, for humanitarian actor to “ensure that data collected
with further research required. This paper will not as- on persons with disabilities is disaggregated by age
sess the strengths of these particular methodologies, and sex, and analysed and used on an ongoing basis to
but instead will focus on some of the new, complemen- assess and advance accessibility of humanitarian ser-
tary resources and recent commitments to disability vices and assistance, as well as participation in policy
data collection at the global level which provide signif- and program design, implementation and evaluation”6.
icant emerging opportunities to enhance global data This Charter is open for endorsement by States and
collection efforts. governments, UN agencies, organisations involved in
humanitarian contexts and organisations of persons
Disability Measurement and the SDGs with disabilities. It has currently been endorsed by
The 2030 Agenda for Sustainable Development, more than 100 stakeholders. The online Platform for
adopted by all UN Member States in 2015, brings un- Action, Commitments and Transformations7 was cre-
precedented opportunity for people with disabilities. ated to house the commitments and provide a hub for
The international disability community successfully transparency, mutual accountability and voluntary
advocated for the inclusion of disability within the progress reporting.
Agenda, and as a result the term disability appears The Inclusive Data Charter (IDC),8 an initiative of
eleven times across six of the SDGs4. In addition to the the Global Partnership for Sustainable Development
explicit references to disability, persons with disabili- Data (GPSSD), was launched at the High Level Political
ties have been included in the definition of vulnerable Forum in 2018 with the aim “to improve the quality,
persons, which in turn has been mentioned six times. quantity, financing, and availability of inclusive and
Of most significance in terms of global disability data disaggregated data as well as the capacity and capa-
collection, is SDG indicator 17.18 which specifically bility to produce and use it, in accordance with inter-
asserts the requirement for data disaggregation by nationally accepted standards and ongoing processes
“income, gender, age, race, ethnicity, migratory status, under the auspices of the United Nations.”9 Signatories
disability, geographic location and other character- to the Charter include governments, UN agencies, Na-
istics relevant in national context”5. All countries are tional Statistical Offices, the World Bank, INGOs, and
expected to report on their national-level progress to- private sector organisations with each developing its
wards the SDG targets at least once by 2030, through a own action plan, according to its own capacity. It is ex-
multi-stakeholder Voluntary National Review process pected that each actor will produce an annual monitor-
presented at the UN High-level Political Forum, the of- ing report on the implementation of their action plans
ficial global-level follow-up and review mechanism for on voluntary basis. In its One Year On: 2019 Monitoring
the SDGs. Report10, the GPSSD reports significant progress made
by many of its signatory organisations in the first year
Emerging Opportunities for Global Disability of the Charter.
Data Collection Further commitments to disability data collection
The current momentum around disability data col- were made at the Global Disability Summit (GDS)
lection, catalysed by the CRPD, and further influenced which took place in July 2018 in London, co-hosted
by Agenda 2030, has encouraged a cascade of multiple by the governments of the United Kingdom and Ken-
new global-level initiatives and commitments around ya, and the International Disability Alliance. The GDS
disability data. Although many of these remain in the Charter for Change11 was signed by 350 governments
Disability and International Development 2/2019 5Disability Data Collection: Emerging Opportunities from Recent Global Initiatives
Multiple new global-level of the Washington Group Questions in humanitarian
action. This is aimed to support organisations collect-
initiatives and commitments ing data on persons with disabilities using the Wash-
ington Group Questions. At the coordination level, as
part of DFID Humanitarian Investment Programme,
around disability data a guidance paper16 was recently launched to provide
support to seven UN entities on how to strengthen in-
provide significant and clusion of disability in Humanitarian Response Plans
through data collection. They refer to the Washington
unprecedented opportunity. Group and the Model Disability Survey as data col-
lection tools. These two initiatives complement each
other and have been drafted in a participatory man-
ner with the same stakeholders involved to ensure co-
herence and consistency. Additionally, the upcoming
Inter Agency Standing Committee Guidelines on In-
clusion of Persons with Disabilities in Humanitarian
Action which will be published later this year will in-
and organisations with over 170 sets of commitments clude a chapter on disability data and will be the over-
to action collected from governments, development all framework – in humanitarian action – under which
agencies, civil society, and the private sector. All com- these initiatives will fall.
mitments have been recorded on a searchable por-
tal developed by the GDS co-chairs12. Initial findings Disability Data Collection
from DFID’s post-GDS report found that progress has and Mainstreaming
been recorded against 75% of these commitments so Disability data collection is now more commonly
far13 with full report due to be published in Septem- being built into mainstream initiatives. The UN in par-
ber 2019. DFID, in collaboration with members of ticular is building disability inclusion into its frame-
the Key Stakeholder Group on Accountability for GDS works. One such initiative includes the aforemen-
commitments, is currently developing the proposed tioned UNDIS, launched at the Conference of State
long term accountability process for the GDS18 com- Parties in June 2019 which provides a foundation
mitments14. As the GDS18 commitments align closely for sustainable and transformative progress on dis-
with the CRPD, it is proposed that the Committee on ability inclusion through all pillars of the United Na-
the CRPD can function as a link between States Parties tions’ work17. This clarifies the UN’s responsibilities
and the GDS18 Secretariat in providing information on to mainstreaming disability inclusion and includes an
how State Parties are implementing their GDS commit- accountability framework with performance indica-
ments, as well as continuing to remind State Parties of tors that measure the UN system’s institutional main-
their obligations. In turn, it is proposed that the GDS streaming and achievement of results.
Secretariat will support by sharing with the Committee There is also an emphasis on disability data in
relevant information relating to the GDS commitments mainstreaming initiatives such as the Humanitari-
of specific State Parties coming up for national review an Inclusion Standard for Older People and People
under CRPD. In addition, DFID is reviewing how best with Disabilities18. The recently launched Protection
to support Disabled People’s Organisations (DPOs) to mainstreaming toolkit19 also contains reference to
hold governments and institutions to account. disability data and the Washington Group Questions.
Additionally, UNHCR published its Working with Per-
Capacity Building Opportunities sons with Disabilities in Forced Displacement guidance
Capacity building of organisations that collect and paper with a section on improving identification and
analyse disability data is essential to ensure the gen- disability data collection20. Similarly, the World Bank
eration of good quality data. The Washington Group launched its Disability Inclusion and Accountabili-
has organised regional implementation workshops to ty Framework21 in June 2018 to offer a roadmap for
support National Statistical Offices in their use of the including disability in its policies, operations, and an-
Washington Group Questions, essential to the accurate alytical work, including promoting the collection of
collection of high quality data. In addition, Humanity disability disaggregated data in accordance with the
& Inclusion developed a Learning Toolkit15 on the use requirements set by the SDGs. These initiatives are
6 Behinderung und internationale Entwicklung 2/2019Disability Data Collection: Emerging Opportunities from Recent Global Initiatives
essential to support the idea that disability is not an collaboration, and with Leonard Cheshire hosting a
add on to existing programming but should be main- Washington Group Working Group to promote collabo-
streamed in the day to day work of every organisation. ration amongst development and humanitarian actors.
Data Sharing Initiatives Conclusion
Contrary to the common misconception, a large There is an unprecedented drive to improve global
body of data which can be disaggregated by disabil- disability data collection, with many of the resulting
ity does exist. Unfortunately, as this data is collected initiatives still in their early stages. The SDGs bring
through a range of national censuses, surveys, stud- unparalleled opportunity for disability data collec-
ies and reviews and is not consistently analysed and tion, mandating disability data disaggregation across
published, much of it remains difficult to find, use and all 17 SDGs and calling on the international commu-
compare22. To address this issue, the Disability Data nity to leave no one behind. As the momentum for data
Portal – a data sharing platform – was launched by collection grows, data collection methods become
Leonard Cheshire with support from UK Aid, at the more sophisticated. Measurement tools are constantly
GDS in 201823. This portal provides a central place to evolving to meet ever-arising new challenges, but con-
store and compare disability data from different sourc- currently are evermore scrutinised, with consensus
es across the world, with some quality control, by col- still forming around the best approaches to use.
lecting pre-existing sources of population level data Widespread commitments to disability data collec-
that has been disaggregated by disability, with data tion, underpinned by the frameworks of the CRPD and
primarily gathered from censuses and Demographic the SDGs, have been undertaken across the interna-
and Health Surveys (DHS), as well as some other na- tional community, including national governments, UN
tional household surveys. It currently captures data on agencies, INGOs, and the private sector. Some of these
40 countries, providing a snapshot of the situation of new initiatives include; capacity building initiatives to
people with disabilities in relation to education (SDG improve quality and consistency of data collection ef-
4), economic empowerment (SDG 8), innovation (SDG forts; disability mainstreaming across major organisa-
9), and stigma and discrimination (SDG 10). As the tions such as the UN and the World Bank; the launch of
portal develops to collect more data on more SDGs, the global Disability Data Portal by Leonard Cheshire;
and from more countries, it has the potential to be a and increased collaboration across inter-agency actors
critical tool for monitoring and assessing global disa- through global workshops and working groups.
bility data and progress towards the SDGs. It is imperative that the global community continue
The UN Statistics Division also have an internation- to recognise the importance of collecting quality, com-
al repository known as the United Nations Disability prehensive and comparable global data, as well as ris-
Statistics Database. It contains data and metadata on ing to the challenge of the complexities of this under-
disability from official statistics, showing basic prev- taking. This will require investing adequate resources
alence in countries, with some attempt to illustrate across all areas of programming including research,
socio-economic characteristics with a view to measure programme and policy design, budgeting and deliver-
equalisation of opportunity24. The Centre for Humani- ing training. Disability data collection is a complex but
tarian Data is making disability more widely available essential process and adequate investment will ensure
by encouraging organisations to share disability data that the incredible opportunity brought about by the
on the inter-agency (non-disability specific) Humani- CRPD and the SDGs will not be missed.
tarian Data Exchange platform25.
NOTES
Inter-Agency Collaboration 1 UNDESA (2016) Convention on the Rights of Person’s with Disa-
In a time where numerous tools and guidelines are bilities (CRPD). Available at: https://www.un.org/development/
being produced, there needs to be a coherent approach desa/disabilities/convention-on-the-rights-of-persons-with-disa-
to disability data collection across the spectrum and bilities.html. Visited on 22 July 2019.
a need for these initiatives to be articulated better to- 2 UN (2018) The Sustainable Development Goals Report 2018.
gether. There have been several moves to collaborate Available at: https://unstats.un.org/sdgs/files/report/2018/The-
with UNICEF and Humanity & Inclusion organising SustainableDevelopmentGoalsReport2018-EN.pdf. Visited on 22
two global multi-stakeholder workshops26,27, the Inter- July 2019.
national Disability Alliance launching a Disability Data 3 Leonard Cheshire (2018) Disability Data Review: A collation and
Advocacy Working Group28 to promote inter-agency analysis of disability data from 40 countries. Available at: https://
Disability and International Development 2/2019 7Disability Data Collection: Emerging Opportunities from Recent Global Initiatives
www.disabilitydataportal.com/fileadmin/uploads/lcdp/Docu- CM.P.pdf. Visited on 22 July 2019.
ments/report-web_version.pdf. Visited on 22 July 2019. 18 Humanity and Inclusion, CBM, HelpAge International (2018)
4 International Disability Alliance, Sustainable Development Advo- Humanitarian Inclusion Standards for Older People and People
cacy [Online]. Available at: http://www.internationaldisabilityalli- with Disabilities. Available at: https://reliefweb.int/report/world/
ance.org/Sustainable-Development-Advocacy. Visited on 22 July humanitarian-inclusion-standards-older-people-and-people-dis-
2019. abilities. Visited on 22 July 2019.
5 UN, Sustainable Development Agenda [Online]. Available at: 19 Global Protection Cluster (2017) Protection Mainstream-
http://www.un.org/sustainabledevelopment/development-agen- ing Toolkit: Field Testing Version. Available at: http://www.
da/. Visited on 22 July 2019. globalprotectioncluster.org/_assets/files/aors/protection_main-
6 Charter on inclusion of Persons with Disabilities in Humanitarian streaming/gpc-pm_toolkit-2017.en.pdf. Visited on 22 July 2019.
Action (2016). Available at: http://humanitariandisabilitycharter. 20 UNHCR (2019) Working with Person’s with Disabilities in Forced
org/ Visited on 22 July 2019. Displacement. Available at: https://www.unhcr.org/4ec3c81c9.
7 Agenda for Humanity Platform for Action, Commitments and pdf. Visited on 22 July 2019.
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org/about-us. Visited on 21 August 2019. work. Available at: http://documents.worldbank.org/curated/
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Inclusive Data Charter. Available at: http://www.data4sdgs.org/ ty-framework. Visited on 22 July 2019.
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behind in the pursuit and measurement of social and economic ments/report-web_version.pdf. Visited on 22 July 2019.
progress. Available at: http://www.data4sdgs.org/sites/default/ 23 Leonard Cheshire (2018) Disability Data Portal. Available at:
files/2018-08/IDC_onepager_Final.pdf. Visited on 22 July 2019. https://www.disabilitydataportal.com/. Visited on 22 July 2019.
10 Global Partnership for Sustainable Development Data (2019) 24 UNSD, Disability Statistics [Online]. Available at: https://unstats.
One Year of the Inclusive Data Charter: What have we achieved, un.org/unsd/demographic-social/sconcerns/disability/statis-
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sites/default/files/2019-07/IDC%20One%20Year%20On.pdf. Visit- 25 OCHA, Humanitarian Data Exchange. Available at: https://data.
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11 Global Disability Summit (2018) ‘Charter for Change’. Available 26 Humanity and Inclusion et. al. (2017) Collecting Data on
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default/files/2018-08/IDC_onepager_Final.pdf. Visited on 22 July pdf. Visited on 22 July 2019.
2019. UNICEF ET AL. (2019): Strengthening Collection and Use of Data on
GLOBAL PARTNERSHIP FOR SUSTAINABLE DEVELOPMENT DATA Persons with Disabilities for Inclusive Humanitarian Action. May
(2018): The Inclusive Data Charter. Available at: http://www. 9-10th 2019, The Hague, Netherlands. Available at: https://drive.
data4sdgs.org/initiatives/inclusive-data-charter. Visited on 22 google.com/file/d/1gcwporf-ryniephvyvhgyhwgjp9lbi_I/view.
July 2019. Visited on 23 July 2019.
GLOBAL PARTNERSHIP FOR SUSTAINABLE DEVELOPMENT DATA UNSD (n.d.): Disability Statistics. Available at: https://unstats.un.org/
(2019): One Year of the Inclusive Data Charter: What have we unsd/demographic-social/sconcerns/disability/statistics/#/home.
achieved, changed and learned? Available at: http://www.data- Visited on 23 July 2019.
4sdgs.org/sites/default/files/2019-07/IDC%20One%20Year%20 WORLD BANK (2018): Disability Inclusion and Accountability Frame-
On.pdf. Visited on 22 July 2019. work. Available at: http://documents.worldbank.org/curated/
GLOBAL PROTECTION CLUSTER (2017): Protection Mainstreaming en/437451528442789278/Disability-inclusion-and-accountabili-
Toolkit: Field Testing Version. Available at: http://www.globalpro- ty-framework. Visited on 22 July 2019.
tectioncluster.org/_assets/files/aors/protection_mainstreaming/
gpc-pm_toolkit-2017.en.pdf. Visited on 22 July 2019. ZUSAMMENFASSUNG
HUMANITY AND INCLUSION ET AL. (2017): Collecting Data on Die globale Erhebung von Daten zu Behinderung ist in den letzten
Persons with Disabilities in Humanitarian Contexts. Available Jahren vorangeschritten, angetrieben durch die Verabschiedung der
at: https://humanity-inclusion.org.uk/sn_uploads/docu- UN Konvention über die Rechte von Menschen mit Behinderungen
ment/2018-03-27-workshop-report-new-york-collecting-da- (UN-BRK) 2006 und die 2030 Agenda für nachhaltige Entwicklung,
ta-pwd-in-humanitarian-contexts.pdf. Visited on 22 July 2019. die explizite Anforderungen an die Aufschlüsselung von Daten nach
HUMANITY AND INCLUSION/CBM/HELPAGE INTERNATIONAL (2018): Behinderung festlegt. Die Erhebung von Daten zu Behinderung ist
Humanitarian Inclusion Standards for Older People and People ein komplexer und dynamischer Prozess, der vielfältige Herausfor-
with Disabilities. Available at: https://reliefweb.int/report/world/ derungen an Qualität und Kohärenz stellt. Es gibt einige Messins-
humanitarian-inclusion-standards-older-people-and-people-dis- trumente zur Erhebung von Behinderung, die sich als Antwort auf
abilities. Visited on 22 July 2019. diese Herausforderungen entwickelt haben. Im Anschluss an die
INTERNATIONAL DISABILITY ALLIANCE (2019): Disability Data Advo- Verabschiedung der UN-BRK und die 2030 Agenda hat sich eine
cacy Working Group: Activities for 2019. Available at: http://www. Anzahl an zusätzlichen globalen Initiativen entwickelt, um Kapazitä-
internationaldisabilityalliance.org/data-advocacy-activities. ten zur Erhebung behinderungsspezifischer Daten aufzubauen. Diese
Visited on 22 July 2019. beinhalten: Das Inclusive Data Charter Projekt; Zusagen aus dem
INTERNATIONAL DISABILITY ALLIANCE (n.d.): Sustainable Develop- 2018 Global Disability Summit; Initiativen zum Aufbau von Hand-
ment Advocacy. Available at: http://www.internationaldisabilit- lungskompetenz; Disability Mainstreaming; Initiativen zur gemeinsa-
yalliance.org/Sustainable-Development-Advocacy. Visited on 22 men Nutzung von Daten; und sektorübergreifende Zusammenarbeit.
July 2019. Diese neuen Entwicklungen sind beispiellos und außerordentlich
LEONARD CHESHIRE (2018): Disability Data Review: A collation and positiv; dennoch muss die globale Gemeinschaft weiterhin die
analysis of disability data from 40 countries. Available at: https:// Komplexität und Relevanz der behindertenspezifischen Datensamm-
www.disabilitydataportal.com/fileadmin/uploads/lcdp/Docu- lung anerkennen, um sie im Mittelpunkt der Entwicklungsagenda zu
ments/report-web_version.pdf. Visited on 22 July 2019. halten, die Bereitstellung adäquater Ressourcen sicherzustellen, um
OCHA (n.d.): Humanitarian Data Exchange. Available at: https://data. die Möglichkeiten auszuschöpfen und nachhaltig zu verbessern.
humdata.org/. Visited on 22 July 2019.
UN (2018): The Sustainable Development Goals Report 2018. Availa- RÉSUMÉE
ble at: https://unstats.un.org/sdgs/files/report/2018/thesustain- La collection des dates globales sur les handicaps a progressée dans
abledevelopmentgoalsreport2018-EN.pdf. Visited on 22 July 2019. les dernières années, catalysées par la Convention des Nations Unis
UN (2019): United Nations Disability Inclusion Strategy. Available at: pour les droits des personnes ayant des handicaps (CRPD) en 2006,
https://www.un.org/development/desa/disabilities/wp-content/ et l’agenda pour l’année 2030 de 2015, qui a pour but le développe-
uploads/sites/15/2019/03/UNDIS_20-March-2019_for-HLCM.P.pdf. ment soutenable et qui a fortement demandé de collectionner des
Visited on 22 July 2019. dates concernant les handicaps. La collection des dates globales
UNDESA (2016): Convention on the Rights of Person’s with Disabili- sur les handicaps est un procès complexe et dynamique avec des
Disability and International Development 2/2019 9Disability Data Collection: Emerging Opportunities from Recent Global Initiatives
multiples défis concernant sa qualité et sa cohérence. Il y a certains y coherencia. Existen varias herramientas de medición disponibles
outils disponibles pour mesurer les handicaps, qui continuent à se para medir la discapacidad, que siguen desarrollándose en res-
développer à regard de ses défis. Suite au CRPD et l’agenda 2030, un puesta a estos desafíos. Después de la CDPD y la Agenda 2030, han
nombre des initiatives globales supplémentaires se sont crées pour surgido varias iniciativas globales adicionales para crear capacidad
construire une capacité concernant la collection des dates sur le en la recopilación de datos sobre la discapacidad, que es el tema
handicaps. Ceci sont dans le centre d’attention de ce document. central de este documento. Entre ellas figuran: la Carta sobre datos
Cela inclue: la Charte des dates inclusives, l’engagement qui a été fait inclusivos; los compromisos contraidos en la Cumbre Mundial sobre
en 2018 au sommet des handicaps globale, le mainstream des handi- la Discapacidad de 2018; las iniciativas de fomento de la capacidad;
caps, les initiatives des partages des dates, et la collaboration entre la incorporación de la perspectiva de la discapacidad; las iniciativas
les agences. Ces développements nouveaux sont étourdissement de intercambio de datos; y la colaboración interinstitucional. Estos
positifs, même si la communauté globale doit continuer a percevoir nuevos avances no tienen comparación y son rotundamente positi-
la complexité et l’importance de collectionner les dates sur les handi- vos; sin embargo, la comunidad mundial debe seguir reconociendo
caps et de mettre en première place de l’agenda du développement, la complejidad y la importancia de recopilarlos, manteniéndolos al
assurant l’attribution des resources adéquats pour se concentrer sur frente de la agenda de desarrollo, asegurando la asignación de los
cette possibilité et de maintenir l’amélioration. recursos adecuados para aprovechar esta oportunidad y mantener
la mejora.
RESUMEN
La recopilación mundial de datos sobre discapacidad ha progresado Authors: Dr. Ola Abu Alghaib, Director Global Influencing and
en los últimos años, reforzada por la adopción de la Convención Research, Leonard Cheshire; Pauline Thivillier, Technical Advisor,
de las Naciones Unidas sobre los Derechos de las Personas con Humanity & Inclusion; Gemma Cook, Policy Manager Interna-
Discapacidad (CDPD) en 2006, y la Agenda 2030 para el Desarrollo tional, Leonard Cheshire.
Sostenible en 2015, que establece requisitos explícitos para desglo- Contact: Ola.AbuAlghaib@leonardcheshire.org;
sar los datos por discapacidad. La recopilación de estos datos es un thivillierp@gmail.com; gemma.cook@leonardcheshire.org.
proceso complejo y dinámico, con múltiples desafíos para su calidad
Foto: ©Schwarzbach/MISEREOR
Weil Menschen
Chancen brauchen.
Spenden Sie jetzt:
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www.misereor.de/jetztspenden
10 Behinderung und internationale Entwicklung 2/2019Disaggregating the Sustainable Development
Goals by Disability: To Leave No One Behind
Daniel Mont
Ensuring that the SDG‘s fulfill their promise of Leave No One Behind, it is important that
the SDG indicators can be disaggregated to monitor the well-being of people with dis-
abilities. Doing this requires the availability of an internationally comparable, efficient
way of identifying people with disabilities in surveys, and then their inclusion into the
current statistical infrastructure. Fortunately, such questions exist, and their inclusion is
straightforward and already starting to get underway in some countries.
The overarching goal of the 2030 For example, instead of only reporting
Agenda for the Sustainable Develop- the employment rate of the entire work-
ment Goals (SDGs) is the elimination of ing-age population, the employment rate
all types of disadvantage faced by people is reported separately for people with
throughout the world. Thus, the associat- and without disabilities. If the rates are
ed indicators established by the UN are the same, that is evidence that there are
designed to monitor outcomes across no significant disability-specific barri-
a wide range of sectors, encompassing ers to employment. The larger the gap,
every aspect of life. The SDGs recognise the more significant are the barriers
that central to the idea of eradicating dis- to employment faced by people with
advantage is the concept of leave no one disabilities.
behind. Too often development efforts A country as a whole can be making
have excluded the consideration of barri- progress on an indicator – for example,
ers faced by certain sub-populations, for universal education – but that does not
example, women, ethnic minorities, and necessarily mean that all groups in that
people with disabilities. country are progressing. As a matter of
Generally speaking, it has not often fact, because people with disabilities are
been possible to know the extent to which a relatively small minority, any movement
people with disabilities are being left be- in an indicator for the entire population
hind, because high quality, timely data will be dominated by the experience of
has not been collected, or when collected, people without disabilities. Consider for
analysed. Even when extensive data on example that in a year before a policy is
people with disabilities has been collect- implemented 50% of children without
ed, it at times is segregated into special disabilities are in school but only 25%
disability studies that do not adequately of children with disabilities. For sake of
serve the purpose of regularly monitor- argument, say that 10% of children have
ing the gaps in outcomes between people a disability. The overall enrolment rate
with and without disabilities. would be 47.5%. If after the policy is en-
To address this problem, the SDGs call acted the enrolment of children with a
for the disaggregation of outcome indica- disability is unchanged but the enrolment
tors by disability status. Disaggregation of children without a disability increases
is simply comparing the value of indi- to 90% the overall indicator will show
cators between different populations. an enrollment rate of 83.5%. The policy
11Disaggregating the Sustainable Development Goals by Disability: To Leave No One Behind
range of National Statistics Offices (NSOs). In the past
Box 1 – Washington Group 17 years, over 135 countries have had representation
Short Set of Questions within the WG1. Various international agencies, DPOs,
1. Do you have difficulty seeing, even if wearing and NGOs have also attended the annual meetings and
glasses? participated in various working groups.
2. Do you have difficulty hearing, even if using a The first tool developed by the WG, Washington
hearing aid? Group Short Set (WG-SS), is a high quality, low cost,
3. Do you have difficulty walking or climbing quickly implementable, internationally comparable
steps? tool for identifying most people with disabilities tested
4. Do you have difficulty remembering or concen- in many low and high income countries throughout the
trating? world (Altman 2016).
5. Do you have difficulty (with self-care such as) Prior to the WG-SS, there were two main ways data
washing all over or dressing? on disability were collected. Either respondents were
6. Using your usual (customary) language, do you asked if they had a disability or they were asked if they
have difficulty communicating, for example un- had one of a list of medical conditions, for example ep-
derstanding or being understood? ilepsy, paralysis, or autism. These methods have been
shown to greatly undercount the number of people
Response categories: No – no difficulty, Yes – with disabilities (Mont 2007). Asking a person if they
some difficulty, Yes – a lot of difficulty, Cannot do have a disability does not work well for a few reasons:
at all • Stigma often prevents people from wanting to say
A person is identified as having a disability if he they have a disability
or she answers Yes- a lot of difficulty or Cannot do • The word disability is often associated only with
at all to at least one question. For more informa- people with severe impairments, so can miss people
tion see: washingtongroup-disability.com with more mild or moderate impairments that still
put them at risk of non-participation
would appear to be huge success. Overall enrolment • Elderly people often do not see themselves as hav-
has nearly doubled, but the indicator totally hides the ing a disability even if they have serious functional
fact that it was completely exclusive. limitations. Age is often not seen as a cause of disa-
There are only two main requirements to be able to bility, but as something different.
disaggregate SDG indicators by disability status: Asking about a list of medical conditions also un-
1. The availability of an internationally comparable, der-identifies people with disabilities:
effective, and efficient question set for identifying • No list of medical conditions is complete
people with disabilities in quantitative data instru- • Many people, especially if they do not have access to
ments health care, may not know what their condition is
2. The inclusion of this question set into the statisti- Functional limitations associated with aging, mal-
cal infrastructure currently in place to generate the nutrition, or other factors that are not connected to a
SDG indicators. specific medical condition can be missed
Fortunately, recent international efforts have result- But even more fundamentally, a medical diagnosis
ed in fulfillment of the first requirement. Recognising does not provide much information on a person’s func-
the need for internationally comparable data on dis- tioning and the barriers they may face. Two people
ability, the UN Statistical Commission established a with the same medical diagnosis – for example, cere-
city group to develop an improved, internationally bral palsy – might have very different limitations and
comparable methodology. The UN Statistical Commis- face very different barriers.
sion sets up many of these groups to deal with various The approach of the WG-SS is based on the bio-psy-
statistical challenges, and are composed of represent- chosocial model of disability embodied in the Inter-
atives from the national statistical offices (NSOs) of national Classification of Functioning, Disability, and
UN member states, named after the first city in which Health2. People are identified as having a disability
they meet. The Washington Group on Disability Sta- if they have a lot of difficulty or cannot do one of six
tistics (WG) was launched in 2001 in Washington, DC. basic activities (see Box 1). This puts them at risk of
Since then, the WG has developed and tested several not being able to participate if they face barriers in the
tools for internationally comparable disability sta- environment. This is the exact population by which we
tistics. It meets annually with representatives from a want to disaggregate the SDGs. We want to determine
12 Behinderung und internationale Entwicklung 2/2019Disaggregating the Sustainable Development Goals by Disability: To Leave No One Behind
Disaggregating SDG indi- been recommended by the United Nations Statisti-
cal Commission and the UN Economic Commission
for Europe’s Council of European Statisticians as the
cators by disability status method for collecting information on disability in the
upcoming 2020 round of censuses, and endorsed by
is essential to ensure no a Disability Data Expert Group under the auspices of
the UN Department of Economic and Social Affairs
one is left behind, and the as the means to disaggregate the SDG’s by disability
status. The WG-SS has also been adopted by the UN
methodology for doing Economic and Social Commission of Asia and the Pa-
cific as a way of identifying people with disabilities
for constructing their Incheon Making the Right Real
so is straightforward and Strategy indicators, by Development Initiative’s P20
effort on monitoring outcomes for the world’s poor-
doable. est twenty percent, and by the United Kingdom’s De-
partment for International Development (DFID) and
Australia’s Department of Foreign Affairs and Trade
(DFAT) for monitoring the impact of their programs.
The next question is, how should the WG-SS be im-
plemented? For the purposes of disaggregation, a spe-
if the people at risk of exclusion because of functional cial disability survey is not needed. In fact it would be
impairments are actually being excluded. inappropriate for this purpose. A better approach is to
Some disability advocates have expressed concern include the WG-SS in the data instruments already be-
that the WG-SS is not consistent with the social model ing used for monitoring the SDGs. This not only reduc-
of disability because it does not specifically ask about es costs by utilising the existing statistical infrastruc-
participation or environmental barriers. As they right- ture, but ensures that indicators are constructed in
fully argue, according to the social model, disability the same way for people with and without disabilities.
arises from the interaction of a person’s functional For an indicator to be comparable across two popula-
limitations with barriers in the environment. Disa- tions it must be collected with the same instrument
bility is not embodied in a person but created by an and sampling design, and at the same time. Simply
unaccommodating environment. However, we cannot adding the WG-SS to an existing survey – which adds
use a participation measure for disaggregating out- between one and two minutes per respondent to the
come indicators because that undermines the purpose length of the survey – allows for the disaggregation
of disaggregation. of all indicators generated by that survey. Besides, the
Consider if we identified people as having a dis- creation of a parallel data system for collecting data
ability with a question like “are you unable to work on disability for SDG disaggregation would be costly
because of a health problem (or impairment)?” Maybe and unsustainable. That is not to say that national dis-
the question could add a clause referring to barriers ability surveys are not useful and important, but they
people face that prevent work. Such a question would are not appropriate for SDG disaggregation. National
not classify someone as having a disability if they were disability surveys (or special survey modules on ex-
working to the extent they desired, even if they had se- isting household surveys) can provide more detailed
vere functional limitations. Therefore, an indicator dis- information, and are especially vital when it comes to
aggregated by this question would not be able to iden- identifying the barriers and facilitators for inclusion.
tify who is and is not affected by employment barriers. After all, SDG disaggregation only reveals gaps in out-
Nor will it be able to track improvements in outcomes. come indicators, it does not provide information im-
Everyone identified by this question will not be work- portant for designing policies to address those gaps.
ing, so it makes no sense to compare their employment Disaggregating SDG indicators that are already
rate with the general population. We want an indicator being produced is very doable. Countries of differ-
that will be able to capture the fact that someone with ent income levels are already including the WG-SS in
a disability was not working, but now is working. their data collection instruments. For example, they
A general consensus has emerged that the WG-SS have been used in the United States, Thailand, Ugan-
approach is the proper one for disaggregation. It has da, Mexico, Bangladesh, Jordan and dozens of other
Disability and International Development 2/2019 13Disaggregating the Sustainable Development Goals by Disability: To Leave No One Behind
countries. Even more are including disability ques-
tions in some capacity, so replacing them with the Box 2 WG Extended Set questions
WG-SS questions would add no time to some existing on anxiety and depression
surveys. Expanded use of the WG-SS, and using them in How often [do/does] [you/he/she] feel worried,
place of these other questions, will improve the quality nervous or anxious? Would you say…
of that disaggregation and provide consistency, with- • Every day
out imposing a noticeable burden on current data col- • A few times a week
lection programs. • A few times a month
However, we should note some limitations of the • A few times a year
WG-SS. • Never
Children. The WG questions do not work for children Thinking about the last time [you/he/she] felt
under the age of 5, and have been shown to miss many worried, nervous or anxious, how would [you/he/
children with developmental disabilities between the she] describe the level of these feelings? Would
age of 5 and 17. For this reason, UNICEF and the WG [you/he/she] say…
created the Child Functioning Module (CFM) (Loeb/ • A little
Mont/Cappa/De Palma/Madans et al. 2018). For pop- • Somewhere in between a little and a lot
ulation wide indicators – such as poverty in the entire • A lot
population – under-identifying children with disabil- How often [do/does] [you/he/she] feel depressed?
ities will not affect the comparison between people Would [you/he/she] say…
with and without disabilities much, since disability is • Every day
strongly associated with age. The percentage of people • A few times a week
with disabilities who are children is small. Also, for in- • A few times a month
dicators like employment that don’t apply to children • A few times a year
it is not relevant. For some indicators, though, as such • Never
as school enrolment, it can be very important. Use of Thinking about the last time [you/he/she] felt de-
the CFM on household surveys can address this. In pressed, how depressed did [you/he/she] feel?
fact, the CFM has been included in UNICEF’s Multiple Would you say…
Indicator Cluster Survey which is currently being im- • A little
plemented (or slated to be implemented) in dozens of • Somewhere in between a little and a lot
low and middle income countries. • A lot
Psycho-social functioning. The WG-SS does not di- A person is considered to have a disability if they
rectly ask about psychological issues, therefore some feel a lot of anxiety or depression on a daily basis.
people with difficulties in those areas will not be iden-
tified. It turns out, that many of those people are still For more information see
identified as having a disability through the cognition, washingtongroup-disability.com
self-care, and communication questions, but they are
not identified specifically as having a psychosocial dif- identified as having a disability by the WG-SS. Anoth-
ficulty. Data from the United States shows that about er condition that is associated with discrimination
half of those with difficulties related to depression and but not the functional issues addressed by the WG-SS
anxiety are identified by the WG-SS (Loeb 2019). Still, if are people with severe facial burns. Again, for popu-
countries are concerned about this – especially if they lation-based comparisons of SDG indicators, missing
are in conflict areas are experiencing other humanitar- these people in surveys will not significantly affect
ian crises – it is possible to add four questions from the measured gaps – and even less so trends in those gaps.
WG Extended Set of questions. These four questions However, if they are important in a country context,
are shown in Box 2. However, for comparability’s sake such questions can be added to surveys, but should not
those questions should be used for internal purposes, be used for international comparisons of SDG indica-
not for international comparisons. tors but for country specific purposes.
Special conditions. In some countries, particular For both psychosocial and other special conditions,
conditions are very stigmatising even if they are not though, it is important that any added questions come
associated with functional limitations. A prime exam- after the WG-SS and not before it, as they will influ-
ple is albinism. While many people with albinism have ence how the WG-SS are interpreted and answered by
difficulties seeing, some will not and thus will not be respondents.
14 Behinderung und internationale Entwicklung 2/2019Sie können auch lesen
