Disability Inclusion in

Humanitarian Crises
Robust Human Rights
Norms?

Carolin Funke · Dennis Dijkzeul

 Palgrave Studies in Disability and International
Development

Series Editors
Shaun Grech, Malta
Nora Groce, University College London, London, UK
Sophie Mitra, Lincoln Center Campus, Fordham University, New York,
USA
We are pleased to announce the new book series, the Palgrave Studies
in Disability and International Development. With this series, we open
space for innovative research, debate and critical writings aimed at pushing
forward the frontiers of discourse, theory and practice. We are seeking
strong new monographs reporting on empirical work, edited books, as
well as shorter theoretical writings, and are especially interested in inter-
disciplinary offerings. In the spirit of openness, we welcome unsolicited
book proposals. We accept completed manuscripts, but would also be
happy to hear on current research or on writing projects still in-process.
The series is intended to span a range of areas and we would welcome
proposals on any topic related to international development and disability,
including, though not exclusively:

• Inclusive education
• Employment and livelihoods
• Social protection
• Disability and poverty
• Human rights and disability rights
• Health and health care
• Discrimination and exclusion
• Religion and spirituality
• Disability definition and measurement—(Data and Disability)
• Rehabilitation and community based rehabilitation
• Enabling and disabling environments
• International development programs and their impacts on disabled
people
• Disability cultures and identities
• Histories of disability
• Postcolonial issues
• Indigenous concerns
• Inclusive research and decolonizing approaches
 Carolin Funke · Dennis Dijkzeul

Disability
Inclusion in
Humanitarian Crises
Robust Human Rights Norms?
Carolin Funke Dennis Dijkzeul
TU Dortmund University Ruhr-University Bochum
Dortmund, Germany Bochum, Germany

ISSN 2945-6614 ISSN 2945-6622 (electronic)

Palgrave Studies in Disability and International Development
ISBN 978-3-031-53808-7 ISBN 978-3-031-53809-4 (eBook)
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 Preface

Armed conflicts and natural disasters disproportionally affect persons

with disabilities. However, persons with disabilities remain insufficiently
included in the operations of humanitarian organizations. This book
studies disability inclusion in humanitarian crises. It explores how activists
and international organizations have promoted a rights-based under-
standing of disability in international law and the extent to which this
understanding has gained acceptance in humanitarian policy and practice.
We have engaged with donors, United Nations (UN) agencies, non-
governmental organizations (NGOs), and persons with disabilities and
their representative organizations to gain a deeper understanding of the
dynamics of disability inclusion norms and organizational action at all
levels of global governance.
Our book is an outcome of the “Leave No One Behind!” project’s
second phase, which was jointly implemented by Handicap International
(HI), Christian Blind Mission (CBM) and the Institute for International
Law of Peace and Armed Conflict (IFHV) between 2018 and 2021.
Taking its title from the 2030 Agenda for Sustainable Development and
the 2016 World Humanitarian Summit, the “Leave No One Behind!”
project series has focused on mainstreaming disability in humanitarian
action through capacity development, applied research, and awareness
raising since 2016.
Our book is intended for persons with disabilities, their caregivers,
members and staff of organizations of persons with disabilities (OPDs),

v
vi PREFACE

public professionals, staff from the UN agencies and NGOs, as well

as scholars from International Relations (IR), disability, humanitarian,
and development studies. We focus more on humanitarian crises than
on development because protracted crises have become increasingly
common. Previous models of a linear transition from humanitarian action
to development cooperation have become obsolete with development
interventions and humanitarian action often occurring simultaneously.
We are thankful for the comments on earlier drafts by our Inter-
national Law colleagues, especially Maximilian Bertamini and Benedikt
Behlert, as well as for those by an anonymous reviewer. We are also
grateful for the tremendous support of our project partners. Their assis-
tance with providing gray literature, facilitating research on the ground,
and offering feedback on earlier drafts, while respecting our academic
independence, has been invaluable. Particularly, we would like to thank
Haakon Spriewald, Ulrike Last, Sabrina Ebert, and Oliver Wiegers. Of
course, we extend our appreciation to the editors for their insightful
comments that enhanced the book’s quality.
We also would like to thank our interview partners, who gener-
ously gave their time despite busy schedules. All interviewees provided
informed consent, and their identities remain confidential. The German
Federal Foreign Office’s funding made this research and the open-access
publication possible.
We hope that this book will contribute to a better understanding
of the challenges faced by, and capacities of, persons with disabilities
in humanitarian crises and how humanitarian organizations respond to
them.
Any mistakes, of course, remain our own responsibility.

Bochum, Germany Carolin Funke

April 2024 Dennis Dijkzeul
 About This Book

With the 2006 Convention on the Rights of Persons with Disabilities,

a new normative understanding of diversity and disability took hold:
persons with disabilities were no longer seen as objects of charity but
as human rights holders who claim and deserve respect and equality.
Nevertheless, persons with disabilities continue to experience heightened
protection risks in humanitarian crises. Usually, they can barely access
essential services and claim their rights. Combining the innovative norm
cluster approach and multi-level analysis, this book explores how the
rights-based understanding of disability has evolved in international law
and to which extent it has gained acceptance in humanitarian policy
and practice. Although donor governments and humanitarian actors have
institutionalized a rights-based understanding of disability at the inter-
national policy level, only a few have precise inclusion strategies. This
delays implementation on the ground and challenges the robustness of
the disability inclusion norm cluster.

vii
 Contents

1 Introduction 1
1.1 Introduction 1
1.2 Background: Disability and Diversity
in Humanitarian Crises 2
1.3 Purpose and Central Research Question 5
1.4 Overview of the Book 6
References 8
2 Understanding Norms, Norm Clusters and Robustness
at Different Levels of Global Governance 13
2.1 Introduction 13
2.2 A Brief History of Norms in International Relations 14
2.3 Norm Clusters in Theory 16
2.4 Norm Robustness in Theory 18
2.5 Levels, Organizations, and Policy Mechanisms 19
2.6 Methods and Case Selection 22
References 24

ix
x CONTENTS

3 Institutionalizing a New Understanding of Disability

in Humanitarian Action at the International Level 27
3.1 Introduction 27
3.2 Background to the Formation of the CRPD 28
3.3 The Convention on the Rights of Persons with Disabilities 30
3.4 The CRPD and Humanitarian Action 33
3.5 Other International Agreements and Policies Relevant
to the Protection of Persons with Disabilities 36
References 38
4 Translating Disability Inclusion into the Humanitarian
System 43
4.1 Introduction 44
4.2 Translation into Donor Government Policies 44
4.2.1 United States 45
4.2.2 Germany 47
4.2.3 European Union Institutions 48
4.2.4 United Kingdom 50
4.2.5 Japan 52
4.2.6 Other Donor Countries and Their
Humanitarian Assistance Abroad 53
4.3 Translating the Inclusion Norm Cluster
at the Interorganizational Level 56
4.3.1 Promoting Meaningful Participation 64
4.3.2 Addressing Barriers 67
4.3.3 Data Collection and Monitoring 68
4.3.4 Empowerment and Capacity Building 73
4.4 Translating the Inclusion Norm Cluster Within
Humanitarian Organizations 75
4.5 Comparative Analysis of Norm Translation
into Policies and Norm Robustness 76
References 82
 CONTENTS xi

5 Implementing Disability Inclusion: Comparing

Bangladesh and South Sudan 95
5.1 Introduction 95
5.2 The Rohingya Refugee Crisis 96
5.3 The South Sudanese Civil War 99
5.4 Comparative Analysis of the Slow Implementation
of Norms on the Ground 103
References 104
6 Analysis Across Actors and Levels 109
6.1 Introduction 110
6.2 Variation in Institutionalization, Translation,
and Implementation 110
6.3 Strengthening Disability Inclusion in Crises:
Linking and Integrating Humanitarian Action
and Development 114
6.3.1 All Actors 114
6.3.2 International Level: States
in Intergovernmental Organizations 115
6.3.3 National Level—Donor Governments 115
6.3.4 National Level—Recipient Governments 116
6.3.5 Interorganizational Level: Strategic
Management of Humanitarian Organizations 117
6.3.6 Local Level: Humanitarian Organizations
at Country or Field Level 117
References 118
7 Conclusions 121
7.1 Introduction 121
7.2 Disability 122
7.3 Norm Theory 123
7.4 Methodology 127
7.5 Issues for Further Research 127
References 128

Index 131
 About the Authors

Carolin Funke is an expert in disability inclusion and internal displace-

ment. She currently works at TU Dortmund University and is a research
affiliate at the Refugee Law Initiative, University of London. Before,
she was a postdoctoral researcher at the Institute for International Law
of Peace and Armed Conflict (IFHV) at Ruhr University Bochum in
Germany and a research fellow at the Institute of Security and Global
Affairs, Leiden University. She has conducted extensive field research in
Georgia and Cox’s Bazar, Bangladesh. Her latest book Durable Solu-
tions: Challenges with Implementing Global Norms for Internally Displaced
Persons in Georgia was published in 2022.

Dennis Dijkzeul is a professor of conflict and organization research at the

School of Social Sciences and the Institute for International Law of Peace
and Armed Conflict at Ruhr University Bochum. He was the founding
director of the Humanitarian Affairs Program at the School of Interna-
tional and Public Affairs of Columbia University in New York. He has
conducted research projects on humanitarian crises and responses in the
DRC, Guatemala, Uganda, South Sudan, Nigeria, and Afghanistan, and
has worked as a consultant for UN organizations and NGOs. His main
research interests concern the management of international organiza-
tions (UN, NGOs, and diaspora organizations) and their interaction with
local actors in humanitarian crises. His latest books are The NGO Chal-
lenge for International Relations Theory (with William DeMars), The New

xiii
xiv ABOUT THE AUTHORS

Humanitarians in International Practice: Emerging Actors and Contested

Principles (with Zeynep Sezgin), Diaspora Organizations in International
Affairs (with Margit Fauser), and International Organizations Revisited:
Agency and Pathology in a Multipolar World (with Dirk Salomons).
 Abbreviations

ADCAP Age and Disability Capacity Programme

ADDC Australia Disability+Development Consortium
AUD Australian Dollar
CBM Christian Blind Mission (Christoffel Blindenmission)
CERF Central Emergency Response Fund
CHS Core Humanitarian Standard
CRPD Convention on the Rights of Persons with Disabilities
DFAT Department of Foreign Affairs and Trade (Australia)
DFID Department for International Development (United Kingdom)
ECHO Directorate General for European Civil Protection and
Humanitarian Aid Operations (European Union)
EU European Union
FCDO Foreign, Commonwealth, and Development Office (United
Kingdom)
GFFO German Federal Foreign Office
GLAD Global Action on Disability
HI Handicap International/Humanity & Inclusion
HIES Household Income and Expenditure Survey
HNO Humanitarian Needs Overview
HNRP Humanitarian Needs and Response Plan
HRP Humanitarian Response Plan
IASC Inter-Agency Standing Committee
ICRC International Committee of the Red Cross
IDA International Disability Alliance
IDC International Disability Caucus
IDDC International Disability and Development Consortium

xv
xvi ABBREVIATIONS

IFRC International Federation of Red Cross and Red Crescent

Societies
IHL International Humanitarian Law
IOM International Organization for Migration
IR International Relations
IRC International Rescue Committee
ISCG Inter-Sector Coordination Group
JICA Japan International Cooperation Agency
LGBTQI+ Lesbian, Gay, Bisexual, Transgender, Queer/Questioning and
Intersex plus
MSF Médecins Sans Frontières
NGO Non-Governmental Organization
OCHA United Nations Office for the Coordination of Humanitarian
Affairs
ODA Official Development Assistance
OECD-DAC Organization for Economic Cooperation and
Development – Development Assistance Committee
OFDA Office of Foreign Disaster Assistance (United States)
OPD Organization of Persons with Disabilities
UK United Kingdom
UN United Nations
UNHCR United Nations High Commissioner for Refugee
UNICEF United Nations Children’s Fund
UNSC United Nations Security Council
UNSSC United Nations System Staff College
USA United States of America
USAID United States Agency for International Development
USD United States Dollar
WFP World Food Programme
WG-SS Washington Group Short Set on Functioning
WHO World Health Organization
 List of Tables

Table 2.1 Levels, mechanisms, actors, and outcomes 21

Table 4.1 Overview of donor positions on disability-inclusive
Humanitarian Action, in descending order based
on the amount of overall funding 57
Table 4.2 Organizational changes in disability inclusion
at the global level 62
Table 4.3 Decision tool for the use of the Washington Group short
set on functioning in humanitarian programming 72
Table 6.1 Closer specification of levels, mechanisms, actors,
and outcomes 112

xvii
Map 1 South Sudan © United Nations, Map No. 4450 Rev. 2, July 2020
Map 2 Rohingya Refugee Response/Bangladesh ©UNHCR
 CHAPTER 1

Introduction

Abstract The introduction highlights the challenges faced by persons

with disabilities during humanitarian crises and the frequent neglect of
their needs and abilities. It also addresses the main international norms
established to support them. Following this, the introduction discusses
the importance of examining the development of disability norms at
different levels of global governance. It then presents the book’s central
research question and main argument, and concludes with an outline of
the book’s contents.

Keywords Persons with disabilities · Humanitarian crises · Global

governance · Inclusion · Human diversity · Sociology of law

1.1 Introduction
The introduction describes the plight of persons with disabilities in
humanitarian crises and the lack of attention to both their needs and
capacities. It highlights the tough and often neglected challenges that
persons with disabilities face, particularly those related to escaping from
danger and accessing protection and services. Moreover, it discusses the

© The Author(s) 2025 1

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_1
2 C. FUNKE AND D. DIJKZEUL

relevance of studying the evolution of disability norms in global gover-

nance and presents the central research question, as well as the main
argument of the book. It also includes an outline of the book’s contents.

1.2 Background: Disability

and Diversity in Humanitarian Crises
Approximately 16% of any population are persons with disabilities (WHO,
2022, 2–3). In war-torn countries where most humanitarian crises occur,
these figures are higher.1 Armed conflicts and emergencies increase
harm, raise barriers, and worsen multiple forms of discrimination, thus
enhancing the risk of developing long-term impairments and secondary
or aggravated health conditions (Lord, 2018).
Persons with disabilities commonly face severe obstacles in accessing
crucial protection and other humanitarian services including health
care, food aid, and water, sanitation and hygiene (Handicap Inter-
national, 2015, 11). The deterioration or collapse of these services
creates disability-specific barriers and risks, while communication strate-
gies do not adequately reach persons with disabilities (Handicap Inter-
national, 2015, 15). Mobility difficulties, loss of assistive devices (such
as wheelchairs, canes, crutches, hearing aids, and prosthetics), inacces-
sible evacuation routes and transportation services, and abandonment by
or loss of caregivers create additional barriers for persons with disabili-
ties in attempts to escape danger (UNICEF, 2013, 49; UNICEF, 2018,
8). This results in higher mortality and morbidity rates. Even in a rich
country like Japan, persons with disabilities were twice as likely to be
killed or injured as those without disabilities during the 2011 earthquake
and tsunami (OCHA, 2014).
In protracted crises, persons with disabilities have only limited access to
livelihoods, employment, and educational opportunities, which increases
the risk of living in poverty and becoming even more marginalized than
before (UNICEF, 2018). Multiple and intersecting forms of discrimina-
tion also exacerbate the risks for persons with disabilities (UN CRPD/
CSP/2017/3, 2017, 2). Women and girls with disabilities, for instance,
are exposed to much higher risks of violence and sexual exploitation (UN

1 One survey found that the disability prevalence among adults in Afghanistan was
almost 79 percent (Asia Foundation 2019, 18). In Syria, estimates are that between 18
and 30 percent of the population has a disability (Skinner 2014, 39–40; UN Syria 2019).
 1 INTRODUCTION 3

General Assembly A/67/227, 2012, 4; Namatovu et al., 2018). About a

third of women with disabilities experience psychological, sexual, or phys-
ical abuse (Handicap International, 2015, 9). Children with disabilities
and their families and caregivers2 are more likely than others to be poor
and excluded from education and accessing targeted and general support
services (UNICEF, 2013, 49). Sometimes, persons with disabilities are
ostracized by their communities.
Humanitarian crises also generate increased numbers of people with
impairments and chronic diseases due to injuries resulting from direct
violence, landmines and other explosives, or owing to a loss of medical
treatment, malnutrition, and access to immunization (UNICEF, 2018,
11). In the Syrian Arab Republic, for example, “a breakdown of services
and lack of humanitarian access to certain parts of the country were linked
to polio outbreaks […]” (Al-Moujahed et al., 2017).
Moreover, human rights violations on account of a disability, including
forced sterilization, involuntary medical and scientific experimentation,
human trafficking, forced disappearances, and attacks against buildings
dedicated to the education, health care, and rehabilitation of persons with
disabilities often remain unaddressed by fact-finding bodies and tribunals
(Pons et al., 2022, 58–59).
The COVID-19 pandemic has aggravated the situation for persons
with disabilities, with persons with intellectual disabilities having a dispro-
portionately high risk of contracting the virus due to difficulties to ensure
adequate physical and social distance to professionals and relatives, who
provide daily support (Doody & Keenan, 2021, 799). Moreover, preven-
tive measures during the height of the pandemic had a major impact on
their lives, leading to increased experiences of distress, loneliness, and
agitation (Embregts et al., 2022; Thalen et al., 2021). A survey found
that in South Sudan, public health messages to limit the spread of the
virus were not inclusive and accessible while inaccessible hand washing
stations, latrines, and bathrooms put persons with disabilities at a higher
risk of infection than persons without (Humanity & Inclusion, 2020, 5).
Undoubtedly, environmental, attitudinal, and institutional barriers exac-
erbate the vulnerability of persons with disabilities, which leaves their

2 Traditionally, the term caregiver has been used frequently, but due to its paternalistic
and medical overtones, it is increasingly being replaced by support person or personal
assistant. Here we stay close to the original source, which uses the term “caregiver”
(UNICEF 2013).
4 C. FUNKE AND D. DIJKZEUL

basic needs and specific requirements unaddressed, while their agency,

capacities, and resources are too rarely noticed.3
These examples of failures to protect persons with disabilities illustrate
the low capacity of the humanitarian system and International Law to
deal with human diversity and ensure that persons with disabilities can
participate in their societies on an equal basis with others. These examples
also contradict the four core humanitarian principles, according to which
human suffering must be addressed wherever it is found (humanity), aid
must be provided on the basis of need alone, giving priority to the most
urgent cases of distress (impartiality), humanitarian actors must avoid
taking sides in hostilities (neutrality), and humanitarian action must be
autonomous from political, economic, military, or other objectives of
other actors (independence) (OCHA, 2012).4
Nevertheless, recent years have witnessed a growing awareness of the
failures in the application of these core principles, as well as serious
gaps in the inclusion of persons with disabilities in humanitarian policy
and response. Particularly since the launch of the Charter on Inclusion
of Persons with Disabilities in Humanitarian Action (a.k.a. Humani-
tarian Disability Charter) at the 2016 World Humanitarian Summit,
resolutions, non-binding agreements, and guidelines have emerged at
the international level. These documents reflect a new human rights-
based understanding of disability—in line with the 2006 United Nations
Convention on the Rights of Persons with Disabilities (CRPD)—and
promote disability-inclusive humanitarian action. They elucidate and
strengthen the normative basis for action and encourage humanitarian
actors, including donor states, UN organizations, the Red Cross and Red
Crescent Movement, and NGOs, to adapt their policies and increase their
accountability toward persons with disabilities.
Despite these developments, there remains a question about the extent
to which the human rights-based understanding of disability has gained
a foothold in humanitarian policy and practice. In other words, has

3 Persons with disabilities have the same basic needs in humanitarian emergencies
as persons without disabilities but may also have specific requirements depending on
their respective impairments. Yet, both have long remained unaddressed in humanitarian
response activities (Handicap International 2015).
4 These principles are also endorsed in UN General Assembly Resolutions 46/182
(1991) and 58/114 (2004).
 1 INTRODUCTION 5

disability inclusion established itself as a robust norm (cluster)5 that

regards persons with disabilities not as passive recipients of aid requiring
treatment and care but as partners who can exercise their rights on an
equal basis with others?

1.3 Purpose and Central Research Question

This book addresses the challenges of acknowledging and accommodating
human diversity, particularly including persons with disabilities and the
degree to which disability is being integrated in international law and
humanitarian action.6 The risks persons with disabilities face in humani-
tarian crises, and their rights, needs, and capacities still receive too little
attention in humanitarian policy, practice, and research. Hence, this book
asks:

How does the disability inclusion norm cluster maintain, strengthen, or

lose its robustness during processes of institutionalization, translation, and
implementation?

The book adopts a multi-level Sociology of Law perspective (Lohne &

Sandvik, 2017), going beyond state-level ratification, accession, or formal
acceptance of a norm, treaty, or convention. This perspective allows
for a broader, more dynamic understanding of norms at several levels
of global governance and provides insights on how norms are inter-
preted, strengthened, or weakened by practices and interactions among
the various state and non-state actors involved in humanitarian crises and
how these norms in turn also influence the behavior of these actors. The
following sub-questions will be addressed:

5 A norm cluster consists of a set of related component norms, which each form a nexus
between a problem, a value, and a behavior (Winston 2018, p. 641, see Chapter 2).
6 Searle defines inclusion in humanitarian action as activities “taken to ensure the right
to information, protection and assistance for all persons affected by crisis, irrespective of
age, sexual and gender identity, disability status, nationality or ethnic, religious or social
origin or identity. Inclusive action focuses on identifying and removing barriers so that
those individuals and groups who are more vulnerable, marginalized and/or excluded can
participate in decision-making and benefit from humanitarian action on an equal basis
with others” (Searle et al., 2016).
6 C. FUNKE AND D. DIJKZEUL

1. Do norms really change the practices of the actors involved? And if

so, how?
2. What is the impact of these norms on the lives of persons with
disabilities?

To answer these questions, we develop a theoretical framework, which

looks at (1) the structure of the disability inclusion norm (cluster), (2) its
addressees and targets; and (3) the levels of global governance to which it
applies. We show that the robustness of norms does not reveal itself in the
ratification, accession, or official acceptance, but rather in their translation
into policy and implementation on the ground. Thus, we argue that it is
necessary for International Law and International Relations (IR) scholar-
ship to pay more attention to processes “below” the international level.
In doing so, we challenge traditional International Law and IR perspec-
tives, which devote most attention to norm development, norm change,
and norm contestation among states at the international level and give
only little attention to translation and implementation. These perspec-
tives result in an inability to explain the actual impact of the component
norms of a norm cluster on policies and practice at different levels of
governance. In this way, we show the challenging move from changing
norms to changing practice, which is central to promoting disability inclu-
sion and understanding diversity. International Law and IR need to take
the “lived realities” of disability inclusion into account.

1.4 Overview of the Book

This book is divided into seven chapters: After this introduction,
Chapter 2 develops a theoretical framework and discusses research
methods for studying disability inclusion at different levels of global
governance based on different strands of IR norm theory. We discuss
norm clusters in IR scholarship and explain the “disability inclusion”
 1 INTRODUCTION 7

norm cluster.7 In the process, we assess the utility of the norm cluster
approach for studying international norms.
Chapter 3 examines how activists, organizations of persons with
disabilities8 (OPDs), and international organizations established disability
as a human rights issue, which differs from traditional views on disability,
specifically the charity and medical models. The chapter discusses the
central relevance of the CRPD for humanitarian policy and practice. It
shows how the CRPD marks a shift from disability as a deficit to disability
that arises “when individuals with impairments interact with the barriers
they face”, which has crucial implications for how humanitarian and other
actors should address disability (IASC, 2019, 6).
Chapter 4 studies how the main international actors in the humani-
tarian system—donors, intergovernmental bodies, and humanitarian orga-
nizations—have translated disability inclusion into their policies. The first
part investigates the policies of the main humanitarian donors. It shows
that despite growing attention, donor governments vary considerably in
their approaches to disability inclusion and must improve their transla-
tion further. The second part comparatively describes and analyzes the
donor approaches. It reveals that most donor approaches are too abstract
and general for implementation. The third part studies translation at the
interorganizational level. It explores how humanitarian organizations (1)
promote meaningful participation of persons with disabilities; (2) address
barriers; (3) exercise data collection and monitoring; and (4) engage
in empowerment and capacity building. This part reveals that these
organizations gradually adapt their practices and struggle with consid-
ering the diversity of the populations they seek to support. The fourth
part of this chapter comparatively describes the measures that organi-
zations have taken so far to translate disability inclusion. The last part

7 Importantly, the norm cluster is an analytical concept that must not be confused
with the actual cluster coordination system in humanitarian action. The coordination
clusters are groupings of humanitarian organizations, which operate in specific technical
sectors, such as nutrition, health, or protection, and coordinate action, promote common
strategies and good practices to avoid duplication, address gaps, and share information
(Global Education Cluster et al., 2020).
8 OPDs are organizations predominantly run by persons with disabilities (in contrast to
welfare and rehabilitation organizations and inclusion-focused NGOs that largely consist of
non-disabled “experts”) and have the intention to represent their interests, raise awareness,
and advocate for their rights (IASC 2019a, 33).
8 C. FUNKE AND D. DIJKZEUL

analyzes norm translation by donor governments and at the humanitarian

interorganizational and organizational levels.
Chapter 5 comparatively examines the implementation of disability
inclusion in two different humanitarian crises. We look at domestic
government policies and humanitarian action in the Rohingya refugee
crisis in Cox’s Bazar, Bangladesh, and the humanitarian crisis in war-torn
South Sudan. It becomes clear that many organizations know about the
CRPD and recognize the need to become disability-inclusive. However,
most struggle with the implementation of the disability inclusion norm
cluster. This chapter elucidates the reasons for incomplete implementation
and limited impact.
Chapter 6 analyzes the key findings using the theoretical framework
developed in Chapter 3. We highlight important differences among the
levels of global governance and show the shortcomings of norm robust-
ness as a concept for the study of norm translation and implementation.
We also present recommendations to strengthen inclusion of persons with
disabilities in humanitarian policy and practice at the various levels of
global governance.
The concluding chapter summarizes the findings, discusses the short-
comings of current IR norm theory, and highlights the need for a
multi-level perspective for studying norm robustness. It is impossible to
understand the politics and governance of human diversity without thor-
oughly reflecting on how global norms are translated into policy and
implemented into practice. Whereas studying norm institutionalization
at the international level requires concepts such as norm contestation
regarding the meaning of norms, norm evasion is a more useful term
to understand the limited effect of norms during translation into poli-
cies and implementation on the ground. We also suggest further research
themes to study the evolution of varied (human rights) norm clusters at
multiple levels of global governance.

References
Al-Moujahed, A., Alahdab, F., Abolaban, H., & Beletsky, L. (2017). Polio in
Syria: Problem still not solved. Avicenna Journal of Medicine, 7 (2), 64–66.
Asia Foundation. (2019). Model disability survey of Afghanistan 2019. San Fran-
cisco. Retrieved May 8, 2023, from https://reliefweb.int/sites/reliefweb.int/
files/resources/Model-Disability-Survey-of-Afghanistan-2019.pdf.
 1 INTRODUCTION 9

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 1 INTRODUCTION 11

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 CHAPTER 2

Understanding Norms, Norm Clusters

and Robustness at Different Levels of Global
Governance

Abstract This chapter develops a theoretical framework and methods for

studying disability inclusion at different levels of global governance based
on different strands of IR norm theory. It also discusses the methods
of data collection and analysis for each level of global governance and
develops a multi-level perspective that goes beyond traditional Interna-
tional Law and IR approaches to understand the (limited) impact of
disability inclusion in humanitarian crises so far.

Keywords IR norm theory · Mixed methods · Norm cluster · Norm

robustness · Impact · Levels of analysis

2.1 Introduction
A plethora of legally binding and non-legally binding norms governs the
humanitarian system. These norms derive from legal standards, inter-
national principles and guidelines, which officially enjoy strong support

© The Author(s) 2025 13

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_2
14 C. FUNKE AND D. DIJKZEUL

from donor governments and humanitarian organizations.1 Most inter-

national norms and standards require humanitarian actors to consider
the needs and specific requirements of persons with disabilities in the
event of an emergency, yet without articulating the parameters of their
protection (Lord, 2018). In other words, they do so implicitly as part
of a general protection norm to which all civilians are entitled in humani-
tarian crises. To begin to understand norms, this chapter first gives a short
overview of norm research and theories and then discusses the method-
ological approach to study norm development at different levels of global
governance.

2.2 A Brief History of Norms

in International Relations
In the early twentieth century, International Relations slowly became
institutionalized as a field of study. Many of the first generation of IR
scholars had a background in International Law. Most of their studies
were of an applied, legal, or historical nature (Dijkzeul & Salomons,
2021, 6). Together with International Law scholars, they held that norms
played a crucial role in world politics. Changing them would be one of
the main ways to improve the world and ensure peace. In addition, many
scholars of both fields hoped that international organizations would be
the main tool to convince states and other actors of these norms. In the
1930s, some scholars started to protest these idealist assumptions. They
argued that power, especially state power, explained more of IR. The use
of power as an explanatory concept helped set IR apart from legal studies
(Dijkzeul & Beigbeder, 2003). Over the years, attention to norms has
waxed and waned in IR, whereas it has continued in International Law
(Bogdandy & Venzke, 2013; Fomerand, 2017; Noortmann, 2019; Waal,
2003).
Currently, the three main IR schools hold distinctive positions on
norms. Ideal-typically, IR realists assume that norms barely matter in
world politics. For them, state power, especially in military and economic

1 International humanitarian law (IHL), international human rights law, human rights,
refugee law, international criminal law, the Code of Conduct for the International Red
Cross and Red Crescent Movement and NGOs in Disaster Relief, the humanitarian prin-
ciples, as well as non-binding rules and regulations on internal displacement from the
Guiding Principles on Internal Displacement.
 2 UNDERSTANDING NORMS, NORM CLUSTERS … 15

relationships, explains most international affairs. Norms are a peripheral

phenomenon. Reacting against realism, constructivists tend to overstate
the influence of actor identities, ideas, and norms to the exclusion
of material and institutional factors; and liberals over-rely for explana-
tion and policy on the diffusion of universal international norms and
institutions that guarantee their own implementation and effectiveness
(DeMars & Dijkzeul, 2025). However, if norms were truly universal,
they would endure over time, be uniform across places, take political
precedence over other interests and commitments, and have the causative
power to guarantee reliable and effective results (DeMars & Dijkzeul,
2025). Although some IR scholars argue that either raw power without
norms or universal norms help with devising parsimonious explanations,
most IR scholars reason less ideal-typically. They take up a position in
between the extremes that norms either can be fully universal or barely
matter.
In such IR scholarship, Katzenstein’s definition of norms as “shared
expectations about appropriate behavior held by a collective of actors”
(Katzenstein, 1996, 5) has become a common standard. IR scholars
describe four central features of norms: intersubjective agreement on their
contents, immediate behavioral orientation, counterfactual validity, and
inherent value (Boekle et al., 1999; Finnemore & Sikkink, 1998; Florini,
1996). The intersubjective nature of norms—shared expectations—does
not qualify them as universal and objective, but as valid within a certain
community or collective, where the norms are shared. The immediate
behavioral orientation means that norms guide or motivate behavior or
at least make an appeal to do so. The counterfactual validity of norms
means that norm violations do not necessarily cause a norm to lose its
validity (Boekle et al., 1999, 6). This counterfactual validity is crucial in
international humanitarian law given its many violations. Finally, norms
have inherent value, which strengthens the willingness of stakeholders to
follow them. The last three features all show the deontological character
of norms. Nonetheless, what can be considered appropriate or inappro-
priate behavior and what constitutes a collective remain particularly vague
(van Kersbergen & Verbeek, 2007), which has led to theoretical debates
on contestation, continuity, and change in the process of norm adop-
tion and evolution (Winston, 2018). Which collective(s) of actors are to
be included? And which people are left behind? Moreover, who deter-
mines what is appropriate or inappropriate in a community? In sum, how
16 C. FUNKE AND D. DIJKZEUL

strong can or should the intersubjective deontological norm features be

to influence the practices of various actors?
In addition, most IR scholars acknowledge that international norms
also play out at the national level. They mention, for example, inter-
national negotiations about norms and policies as a two-level game
(Putnam, 1988). However, as stated, they rarely go beyond treaty rati-
fication to look at national or local politics. In other words, they have a
too narrow and homogeneous definition of the actors constituting and
influencing the international community.
We hold that the three main IR schools need to upgrade their ideas
of norms and levels. Otherwise, IR will fail to do justice to the mani-
fold—positive and negative, as well as imperfect or incomplete—ways that
norms influence practice, not just of states but also of other actors in the
IR zoo. To do so, we now turn toward two more specific norm theories:
norm cluster and norm robustness theory.

2.3 Norm Clusters in Theory

To remedy the problem of what is appropriate or inappropriate, Winston
suggests taking a close look at the structure of norms themselves. She
sees a norm as a nexus between a problem, a value, and a behavior
(Winston, 2018, 641). The value is subjective but important as it iden-
tifies the problem and limits the behavior that is appropriate to solve it
(Winston, 2018, 640). She argues that norms often appear as a cluster,
defined as “an expanded space within multiple combinations of problems,
ideations, and behaviors” that result in an intersubjective (i.e., collectively
held) acceptable set of solutions (Winston, 2018, 654).
Applied to disability inclusion, the norm cluster consists of a clearly
defined problem, namely the neglect of persons with disabilities in
humanitarian crises, the value, based on Article 11 of the CRPD that
their inclusion must become an integral part of humanitarian action, and
a set of different expected behaviors. These behaviors derive from the
CRPD, in particular its general principles (Article 3) and general obliga-
tions (Article 4). They include the principles of non-discrimination, full
and effective participation, equality of opportunity, and accessibility, and
the obligation to ensure and promote the full realization of all human
rights and fundamental freedoms. In addition, the specific Articles of
the CRPD provide necessary aspects of complying with those general
 2 UNDERSTANDING NORMS, NORM CLUSTERS … 17

principles in particular areas, such as education and health. These prin-

ciples and general obligations informed the 2019 Inter-Agency Standing
Committee (IASC) Guidelines on the Inclusion of Persons with Disabili-
ties in Humanitarian Action, in short, the IASC Guidelines (see sections
below).2
Winston’s definition differs from Lantis and Wunderlich who regard
clusters as “collections of aligned, but distinct, norms or principles that
relate to a common, overarching issue area” (Lantis & Wunderlich,
2018, 571). In the latter’s understanding, the specific obligations of
the specific norms in the cluster “usually, but not necessarily, coincide”
(Lantis & Wunderlich, 2018, 571). Whereas Winston (2018) and Lantis
and Wunderlich (2018) simply use the concept norm, we differentiate
between a norm cluster and its parts that we call “component norms”.
Lantis and Wunderlich give the example of the non-proliferation regime
complex, which consists of three major (component) norms: First, the
obligation of nuclear-weapon states not to transfer nuclear technologies to
non-nuclear-weapon states. Second, the right to access the peaceful uses
of nuclear energy. Third, the obligation to work toward nuclear disarma-
ment. “These norms are effectively bound by a central logic of restraint”
(Lantis & Wunderlich, 2018, 583).
This conceptualization of norm clusters is more difficult to apply
to human rights norms. Particularly the CRPD, which contextualizes
disability within the broad human rights lexicon, initiates a dynamic treaty
practice that interacts with and advances interpretations of other interna-
tional law domains, such as refugee and asylum law (Lord et al., 2022)
and international criminal law (Pons et al., 2022). Furthermore, interna-
tional Conventions like the CRPD usually do not discriminate between
classes of states but apply equally to all States Parties.3 Moreover, they
are not only bound to a central logic of restraint, but also by a ‘logic
of action’, in the case of the CRPD to protect the rights of persons

2 The IASC is the high-level humanitarian coordination body of the United Nations
System, International Committee of the Red Cross, International Federation of Red Cross
and Red Crescent Societies, and international NGO umbrella organizations. The UN
Office for the Coordination of Humanitarian Affairs (OCHA) functions as its secretariat.
For more information, see https://interagencystandingcommittee.org/.
3 However, in the case of socio-economic rights states are bound to invest the maximum
amount of resources, pass legislation, and adopt and execute concomitant policies. This
obligation applies to the resources existing within a state and those available from the
international community.
18 C. FUNKE AND D. DIJKZEUL

with disabilities. This logic of action then requires multiple actions simul-
taneously. However, in practice these multiple actions may need to be
prioritized during operationalization.4 Four component norms play a
crucial role in this logic of action, as they connect problems, values,
and behavior more specifically than the overarching disability inclusion
norm. These component norms correspond to the four “must-do” actions
for disability inclusion outlined in the IASC Guidelines: (1) promote
meaningful participation; (2) remove barriers; (3) empower persons with
disabilities and support their capacity development; and (4) disaggregate
data for monitoring inclusion (see Chapter 4).

2.4 Norm Robustness in Theory

A second strand of norm theory discusses the robustness of norms.
Human rights “norms are considered to be robust when they are regarded
as legitimate, endorsed, ratified, and followed by a critical mass of players”
(Lantis & Wunderlich, 2018, 574). This implies that “they are regu-
larly cited in international discourse, included in policy statements …
and implemented into national law and regulations” (Lantis & Wunder-
lich, 2018, 574). According to Deitelhoff and Zimmermann (2019, 3),
the robustness of a norm is high “when its claims are widely accepted
by norm addressees (validity) and generally guide the actions of these
addressees (facticity)”. Conversely, robustness is low “if there is limited
international acceptance and support or compliance” (Lantis & Wunder-
lich, 2018, 574). Nevertheless, these authors leave out the evolution of
norms “below” the national policy level. They also do not determine
what precisely constitutes a critical mass, and how to measure wide norm
acceptance empirically across levels of global governance. Importantly,
like most IR and legal scholars, they consider norm addressees predom-
inantly to be states in the international system. Hence, the problems of
defining appropriate behavior and determining who constitute the collec-
tive come back under a different name. This is especially a problem for
studying inclusion, because including diversity often implies broadening
the “collective” with the excluded or discriminated groups.

4 Note how the distinction between a logic of restraint and the logic of action correlates
with the distinct roles of national governments with respectively negative and positive
rights.
 2 UNDERSTANDING NORMS, NORM CLUSTERS … 19

We argue that in order to understand progress and gaps in inclusion,

we need a broader conceptualization of the term “norm addressees” than
states. It should also include those actors who ‘make a norm come to life’
on the ground.
For the study of norm robustness at different levels of global gover-
nance, it is thus crucial to distinguish between states, humanitarian orga-
nizations, OPDs, and others who express formal commitment to these
human rights norms, for example in their internal policies but are not
formally bound to them in International Law. According to this under-
standing, norm addressees may also be organizations or groups in society
that cannot officially endorse a norm through established inter-state
mechanisms of norm acceptance (ratification, accession, subscription).
In sum, merely looking at the numbers of CRPD ratification offers
only a limited picture of the inclusion norm’s robustness and the extent
to which the human rights-based understanding of disability inclusion has
gained a foothold in the humanitarian system for three reasons. First, the
CRPD is only open to States Parties and regional organizations and does
not give other actors in the humanitarian arena the chance to endorse
its norms in a similar manner—although some OPDs and civil society
actors leverage ratification by states to advance inclusion through legal
pressure and advocacy. Second, and more importantly, treaty ratification
says little about how States Parties and other actors interpret the norms
and how these guide their actions. “Just because two states have signed
and ratified the same international norms, or similarly incorporated them
within domestic law, does not necessarily mean that they will be similarly
implemented” (Betts & Orchard, 2014, 1). Third, whereas some OPDs
and other civil society actors will reference the CRPD as a guide, other
actors may neglect or reject the CRPD. In the end, norm robustness is not
only determined by the acceptance and behavior of states, but depends on
norm enactment by a larger, and more diverse range of actors at different
levels of global governance.

2.5 Levels, Organizations,

and Policy Mechanisms
Betts and Orchard (2014) redefined and specified the terms “institu-
tionalization” and “implementation” in an elaboration of the well-known
norm life cycle of Finnemore and Sikkink (Finnemore & Sikkink, 1998,
896). For them, institutionalization refers to the process by which norms
20 C. FUNKE AND D. DIJKZEUL

emerge and become reflected in international law and organizations, and

implementation describes the steps that are necessary to introduce the
norm into legal and policy mechanisms (Betts & Orchard, 2014, 2).
These processes may influence and interact with each other (Betts &
Orchard, 2014, 5). Betts and Orchard focus merely on the national level,
but implementation also occurs “in the field”, for example, when orga-
nizations apply these norms in their programs and daily operations. To
make a more precise conceptual distinction, Zimmermann (2016) there-
fore speaks of norm “translation” when referring to the process by which
states and other actors incorporate global norms into national laws and/
or organizational policies and of “implementation” to refer to the local
dimension of a norm’s practical application. To determine the robust-
ness of a norm or a norm cluster, it is useful to combine the approaches
by Betts and Orchard with Zimmermann’s into a multi-level approach.
We therefore conceptually distinguish between three different, but related
processes of norm development, namely norm institutionalization, trans-
lation, and implementation that take place at different societal levels,
which fits well with a Sociology of Law perspective.
Norm institutionalization describes the process of achieving official
acceptance of a norm through treaty signature, ratification, or acces-
sion. It occurs at the international level and mainly but not only involves
states. It is the standard face of International Law and IR. Norm trans-
lation takes place when national governments or organizations actors
embed international norms in their respective policies. And implemen-
tation is concerned with the necessary actions to reach the norm ‘targets’
“on the ground”(Betts & Orchard, 2014, 5). Translation and especially
implementation involve a wide range of actors beyond states (Table 2.1).
The ways in which the different levels are constituted and influence
each other is first and foremost an empirical question. At times, the
actions at one level may not influence another much. Rhetoric may sound
good, but not leave an impact, and substantive reports may gather dust on
bookshelves. At other times, all levels may be deeply influenced by each
other, although the exact magnitude may not be clear at first sight. In
these cases, it is not always easy to make sharp distinctions between insti-
tutionalization, translation, and implementation because these processes
then interact with and inform one another (Funke, 2022). But even when
the actors and mechanisms from different levels intensely influence each
other, they cannot be reduced to each other, because the types of actors
and mechanisms vary and cause different, albeit sometimes overlapping
 2 UNDERSTANDING NORMS, NORM CLUSTERS … 21

Table 2.1 Levels, mechanisms, actors, and outcomes

Levels of global Main mechanism of Main actors/Norm Desired outcomes

governance norm development addressees

International Level Institutionalization States in Resolutions,

intergovernmental treaties,
organizations (e.g., conventions,
UN System) and international
coordinating bodies standards,
guidelines
National Level and Translation National Domestic law
Interorganizational governments, and/or thematic
(Strategic) Level strategic policies
management of
humanitarian
organizations
Local Level Implementation Humanitarian Access to assistance
organizations at and protection for
country/field level, people of concern
target groups, and / target groups
other actors in the
humanitarian arena

outcomes for each level. Scholars that focus on one level either implicitly
assume that action at one level smoothly influences the other levels or that
other levels are simply not relevant. In both cases, the scientific under-
standing of norm development and impact of these disciplines is severely
curtailed. This has happened too often in both International Law and IR.
Above we described the problems with determining the “collective”
or “community” that shares a norm. Distinguishing these levels partly
addresses this problem, because it is often easier to distinguish the rele-
vant, varying actors for each level than comprehending all of them at
once.
From a multi-level perspective, the inclusion of persons with disabil-
ities is not just about whether a norm should exist or not, but also
about whether the adoption of the CRPD in 2006 and its translation and
implementation have strengthened a human rights-based understanding
of disability inclusion by which donors and humanitarian actors ensure
that persons with disabilities have access to protection and assistance on
an equal basis with others (Searle et al., 2016, 7).
This implies that it is fruitful to explore how a rights-based under-
standing of disability inclusion in humanitarian action has evolved.
22 C. FUNKE AND D. DIJKZEUL

Otherwise, understanding diversity and promoting inclusion will remain

superficial. After all, inclusion also entails shifting the power balance
among actors and its study also requires examining national and sub-
national levels (Búzás, 2022; Crowley-Vigneau, 2022), as well as the
interaction of actor collectives—donor governments, UN bodies, inter-
national NGOs, OPDs, persons with disabilities, and so on—across these
levels. Ultimately, it is the changes in the lives of persons with disabilities
that show the impact of the norm cluster.
In the empirical chapters, we first examine the international level. In a
second step, we study how prominent donor governments in the humani-
tarian arena conceptualize and translate disability inclusion in their policies
and activities. Next, we look at the translation of disability inclusion at the
strategic level of humanitarian organizations, and then implementation
in two crises—in Cox’s Bazar, Bangladesh and South Sudan—to better
understand how norms shape and are shaped by practices and interactions
of various actors at different levels of global governance.

2.6 Methods and Case Selection

Studying norms at different levels of global governance requires a qualita-
tive mixed methods approach. For institutionalization at the international
level, we use legal and policy analysis, and collect data from interna-
tional databases and websites in Chapter 3. We additionally analyze
UN resolutions and policy documents, international conventions, and
declarations.
For translation into domestic policy at the national level, we collect,
analyze, and compare national policies and financial data of the main
donor governments in Chapter 4 to better understand to which extent
they have incorporated the four component norms into policy. We
also study translation at the policy level of international organizations
by collecting and analyzing their policies, strategic frameworks, policy
evaluations, and official websites.
By comparing two dissimilar case studies on disability inclusion in
two humanitarian crises, Cox’s Bazar, Bangladesh and South Sudan, we
analyze implementation at the ground level in Chapter 5.5 The two
states differ in their degree of statehood: the Bangladeshi government

5 Research in Bangladesh took place in 4 weeks in January and February 2020 and
in South Sudan over 10 weeks between June and August 2021 (see Funke & Dijkzeul,
 2 UNDERSTANDING NORMS, NORM CLUSTERS … 23

is stronger than the South Sudanese one and has the authoritarian power
to control the humanitarian work of international and national organi-
zations.6 Whereas in Bangladesh, humanitarian action is limited to the
Cox’s Bazar district, where almost one million Rohingya have sought
shelter after mass atrocities in Myanmar, in South Sudan, two-thirds of
the population across the country depend on humanitarian assistance.
Yet, both countries experience a protracted crisis, receive huge amounts
of funding, and host a large variety of humanitarian organizations. This
allowed us to broaden our analysis of inclusion to different types of actors.
For analyzing implementation, we rely on 49 semi-structured expert
interviews with humanitarian practitioners from 32 different organiza-
tions. In Bangladesh, 34 individuals from 18 different organizations
participated in this research. One interview was conducted remotely with
a representative from the national authorities (Funke & Dijkzeul, 2021b).
In South Sudan, 15 experts from 14 organizations were interviewed
remotely via Zoom or Skype.7 Requests to interview a representative
from the national authorities remained unanswered (Funke & Dijkzeul,
2021a).
In addition to interviews, research consisted of one focus group discus-
sion with eight field staff from an international mainstream humanitarian
NGO working on protection in the refugee camps and host communities
in Teknaf and Ukhiya in Cox’s Bazar, and two focus group discussions
with 21 representatives from OPDs in South Sudan (five women and five
men in Yei; four women and seven men in Yambio). Moreover, it included
a review of gray literature from Humanity & Inclusion (HI), Christian

2021a: 28, 2021b: 16). Data analysis took place intermittently over a year after the field
visits and was reviewed again for this publication.
6 During the field research in 2021 in Bangladesh, there was criticism and occasionally
protests against the government of Bangladesh, but its authoritarian measures against its
own population as well as the refugees in Cox’s Bazar still looked strong. Only in 2024,
just before this book going into print, did protests against authoritarian rule, especially in
the capital, Dhaka, succeed in removing the authoritarian government. It is too early to
tell what this change will mean for the Rohingyas in Bangladesh.
7 Originally, we had planned the same design for field research in South Sudan. Due to
COVID-19, however, a field visit was not possible. “This limited the number of interview
partners significantly since interviews could not be arranged spontaneously ‘on the spot’.
Moreover, the researchers were unable to participate in relevant meetings, visit interven-
tion sites and learn from observations and informal conversations with humanitarian staff”
(Funke & Dijkzeul, 2021a: 18). COVID-19 also hindered access to national authorities
in South Sudan.
24 C. FUNKE AND D. DIJKZEUL

Blind Mission (CBM), and their local partner organizations. This included
barriers and facilitators assessments, project proposals and project infor-
mation sheets. In Bangladesh, one author also participated in cluster
and staff meetings in Cox’s Bazar, visited refugee camps and engaged
in informal exchange with international and national humanitarian staff
involved in the Rohingya refugee response.
All interviews were transcribed and analyzed with MAXQDA software.
Coding was based deductively on the four “must-do” actions from the
IASC Guidelines and inductively on themes, such as “collaboration and
cooperation” and “challenges in daily work”, that came up during the
interviews (Funke & Dijkzeul, 2021a: 30–31, 2021b: 18–19). Staff from
HI, CBM, and their partner organizations also provided substantial feed-
back on drafts of the two research reports (Funke & Dijkzeul, 2021a,
2021b) and this book.
The following three chapters will examine norm institutionalization,
translation, and implementation empirically to explain the impact and
robustness of the disability inclusion norm cluster.

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 CHAPTER 3

Institutionalizing a New Understanding

of Disability in Humanitarian Action
at the International Level

Abstract This chapter examines the traditional views on disability (e.g.,

the charity and medical models), how activists, organizations of persons
with disability (OPDs), and international organizations made disability
a human rights issue, and discusses the central relevance of the CRPD
for humanitarian policy and practice. In short, this chapter discusses
how and to which extent a human rights model of disability has been
institutionalized at the international level.

Keywords Models of disability · CRPD · Norm institutionalization ·

Disability rights movement · United Nations

3.1 Introduction
In the first two and a half decades of the United Nations, persons
with disabilities were “more or less invisible” as citizens and human
rights holders (Degener & Begg, 2017, 3). Instead, a paternalistic and
medical-centric approach prevailed that reduced disability to an impair-
ment. Starting in the late 1960s, disability organizations and advocates
have lobbied intensively for a move away from the perception of disability
as a medical observation and physical limitation (Bantekas & Oette, 2020,
591). With the adoption of the CRPD in 2006, a human rights model

© The Author(s) 2025 27

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_3
28 C. FUNKE AND D. DIJKZEUL

established itself that demands respect for dignity, full and effective partic-
ipation and inclusion in society as well as equality of opportunity. This
chapter discusses how a human rights-based understanding of disability
has been institutionalized at the international level and examines its
relevance for humanitarian action.

3.2 Background to the Formation of the CRPD

For a long time, support for persons with disabilities was rooted in
the charity model , which predominantly sees them as victims or depen-
dents unable to care for themselves. Rather similarly, the medical model
reduces disability to a medical phenomenon of impairment, “that needs
to be treated, cured, fixed or at least rehabilitated” (Stein & Lord,
2009, 20). The medicalized approach to disability is also reflected in
the terminology of international humanitarian law, in which persons with
disabilities are variously referred to as the “infirm”, “wounded”, “sick”,
and “disabled”. Other terms, which refer to certain categories of individ-
uals with disabilities, as persons with “mental disease” or individuals who
are “blind”, “maimed”, or “disfigured” also fit the charity and medical
model (OHCHR, 2015, A/HRC/31/30; Lord, 2018). When the UN
General Assembly began to engage with the rights of persons with disabil-
ities in the early 1970s, its non-binding declarations also reflected features
of the charity and medical models.1
With the emergence of the disability rights movement in the late
1960s, persons with disabilities and their representative organizations
increasingly challenged these two models that locate disability with the
individual and their impairment. They promoted new models. The most
prominent one, the social model , regarded disability as a social construct,
according to which exclusion from society is no longer a product of
impairments but a result of a disabling environment, barriers, and cultures

1 For example, UN General Assembly Res. 2856 (XXVI), 1971; UN General Assembly
Res. 3347 (XXX), 1975. Art. 1 of the Declaration on the Rights of Mentally Retarded
Persons reads: “The mentally retarded person has, to the maximum degree of feasibility,
the same rights as other human beings”. Article 3 of the Declaration on Disabled Persons
spells out: “Disabled persons have the inherent right to respect for their human dignity.
Disabled persons, whatever the origin, nature and seriousness of their handicaps and
disabilities, have the same fundamental rights as their fellow-citizens of the same age”.
Furthermore, Art. 4 stresses: “Disabled persons have the same civil and political rights as
other human beings”.
 3 INSTITUTIONALIZING A NEW UNDERSTANDING … 29

(Barnes, 2012, 18). Several UN General Assembly resolutions endorsed

this understanding of disability. The 1982 World Programme of Action
Concerning Disabled Persons (Quinn et al., 2002, 30), for example,
embraced the social model and promotes disability prevention, rehabil-
itation, and the equalization of opportunities (UN General Assembly
Res. 48/96, 1994; Quinn et al., 2002, 31; van Weele, 2012). The 1993
Standard Rules on Equalization of Opportunities for Persons with Disabil-
ities (UN General Assembly Res. 48/96, 1994, 22) underscored the
right to equal participation of persons with disabilities and established
“a monitoring mechanism through the appointment of a Special Rappor-
teur who reports to the Commission for Social Development” (Stein &
Lord, 2009).2 The Standard Rules were also significant because their
language began to resemble a rights-based approach. Nevertheless, they
failed to assert that persons with disabilities are full citizens and rights
holders (Begg, 2022, 137).
After the turn of the century, organizations of persons with disabilities,
including Disabled People’s International, Inclusion International, Reha-
bilitation International, the World Blind Union, and the World Federation
of the Deaf, began to lobby hard for a legally binding convention (Quinn
et al., 2002, 293). In 2001, with support from the Mexican delega-
tion, the General Assembly passed a resolution that created the so-called
Ad Hoc Committee of the CRPD to examine proposals for a conven-
tion (Degener & Begg, 2017, 13,15). In August 2006, the Ad Hoc
Committee approved a draft text of the Convention and its Optional
Protocol. In the same year, and after some minor revisions, the General
Assembly adopted the Convention and its Optional Protocol by consensus
(UN Department of Economic and Social Affairs – Disability, n.d.a). They
entered into force on 3 May 2008 after the deposit of the twentieth
instrument of ratification or accession (Article 45).
Officially, the CRPD enjoys strong support from states. As of
September 2024, there were 191 States Parties and 164 signatories to
the Convention (UN Treaty Collection, n.d.b). Its Optional Protocol,

2 Bengt Lindqvist, a blind former minister of Sweden (1992–2002), Sheika Hessa Al

Thani of Qatar (2003–2005), and Shuaib Chalklen (2005–2014), a wheelchair user from
South Africa, successively held the position until its replacement in 2014 with a new
position of special rapporteur on the rights of persons with disabilities. In 2020, lawyer
Gerard Quinn replaced the previous mandate holder, Catalina Devandas Aguilar (UN
Department of Economic and Social Affairs – Disability, n.d.b).
30 C. FUNKE AND D. DIJKZEUL

which establishes procedures for individual and group complaints on

violations of the CRPD, has been signed by 94 states and ratified by 106
(UN Treaty Collection, n.d.a). The advocacy for a new human rights
convention was so successful because many states, activists, and inter-
national organizations supported the issue content—demanding equality
and non-discrimination (Price & Sikkink, 2021, 40).
Such almost universal endorsement can be explained by the fact that
disability inclusion is connected to powerful moral foundations—inherent
dignity, non-discrimination, full and effective participation in society,
respect for differences and acceptance of persons with disabilities as part of
human diversity, equality of opportunity, accessibility, and equality—that
resonate with moral intuitions of both liberals and conservatives (Price &
Sikkink, 2021, 40). Unlike other human rights norms, for example,
concerning lesbian, gay, bisexual, transgender, queer/questioning, and
intersex (LGBTQI+) individuals, the CRPD does not come into direct
conflict with other moral institutions.3 In short, there is little open norm
contestation of disability inclusion at the international level of governance.
From a traditional International Law and IR perspective, this suggests
that the CRPD is a robust normative instrument. However, attention to
translation and implementation (see below) shows that the ratification or
accession to the treaty does not automatically translate into a ‘robust’
norm cluster.

3.3 The Convention on the Rights

of Persons with Disabilities
The Convention itself was not intended to create new rights for persons
with disabilities.4 Instead, it builds upon and complements pre-existing
human rights conventions, including the International Covenant on

3 Price and Sikkink (2021, 4) explain that “campaigns for LGBTQ rights come into
direct conflict with other powerful intuitions of ‘sanctity/purity’ around the world that
have long demonized homosexuality as deviant and impure, as well as the moral founda-
tion of obedience to authority, in this case religious authority”. This is not the case with
persons with disabilities.
4 A similar process took place with the development of the Guiding Principles on
Internal Displacement. Fearing that opening a discussion on a convention on internally
displaced persons could actually weaken already existing norms on refugees and asylum
seekers, the drafters of these Guiding Principles explicitly built on already existing conven-
tions and resolutions (Funke & Dijkzeul, 2017). Hence, the formulation of both the
 3 INSTITUTIONALIZING A NEW UNDERSTANDING … 31

Economic, Social and Cultural Rights; the International Covenant on

Civil and Political Rights; the International Convention on the Elim-
ination of All Forms of Racial Discrimination; the Convention on the
Elimination of All Forms of Discrimination against Women; the Conven-
tion against Torture and Other Cruel, Inhuman and Degrading Treat-
ment of Punishment; the Convention on the Rights of the Child; the
International Convention on the Protection of the Rights of All Migrant
Workers and Members of Their Families.5 The rationale behind the devel-
opment of a separate human rights treaty lies in the acknowledgment that
pre-existing conventions did not sufficiently elevate the rights of persons
with disabilities as equal rights holders (UN, 2008). Indeed, none of the
abovementioned human rights treaties “expressly protected the rights of
persons with disabilities” (van Weele, 2012, 10). Only the Convention on
the Rights of the Child contains a distinct disability-related article, which
gives children with disabilities the right to special treatment, education,
and care (Stein & Lord, 2009, 20):

States Parties recognize the right of the disabled child to special care and
shall encourage and ensure the extension, subject to available resources, to
the eligible child and those responsible for his or her care, of assistance for
which application is made and which is appropriate to the child’s condition
and to the circumstances of the parents or others caring for the child (Art.
23 (2)).

Crucially, the CRPD codifies a new human rights model of disability.6

Persons with disabilities are no longer “viewed as ‘objects’ of charity,
medical treatment and social protection but as ‘subjects’ with rights, who
are capable of claiming those rights and making decisions for their lives
based on their free and informed consent as well as being active members
of society” (UN Department of Economic and Social Affairs - Disability,
n.d.a).

CRPD and the Guiding Principles on Internal Displacement built on existing international
law in order to avoid norm contestation and potential weakening of norms.
5 Its Preamble explicitly grounds the CRPD in these human rights treaties.
6 In principle, persons with disabilities have the same rights and guarantees under
existing human rights law. The CRPD differs in that it explicitly recognizes and elevates
those rights, and emphasizes that an impairment does not diminish human dignity and
equality. Moreover, it clarifies how existing rights should be applied to persons with
disabilities.
32 C. FUNKE AND D. DIJKZEUL

The CRPD does not provide a universal definition of the term ‘disabil-
ity’.7 The questions of including definitions of ‘disability’ and ‘persons
with disabilities’ in the Convention “were among the most controver-
sial” during the preparations (Cera, 2017, 84). Advocates of a definition
wanted “to ensure that the Convention applied to all persons with disabil-
ities” (Cera, 2017, 84). Opponents, in contrast, feared that a too open
definition would have required them to recognize “a large number of
impairment groups not traditionally understood as persons with disabili-
ties within their societies” (Cera, 2017). Even the International Disability
Caucus (IDC), a loose network of global, regional, and national organi-
zations of persons with disabilities and allied NGOs participating in the
negotiation process (2001–2006), objected to a definition of disability.
On the one hand, IDC feared that a definition “would inevitably reflect
the medical model and would be externally imposed and disempowering”
(Cera, 2017). On the other hand, it argued “that the understanding of
‘disability’ as a social category is evolving over time and varying between
societies” (Cera, 2017). Furthermore, an inclusion “of a definition in the
CRPD runs the risk of imposing a western view of disability on non-
western cultural systems” (Cera, 2017, 84–85). Eventually, an agreement
was reached. Instead of introducing a clear-cut definition, Article 1 iden-
tifies the holders of all human rights set out in the CRPD: “persons with
disabilities include those who have long-term physical, mental, intellec-
tual or sensory impairments which in interaction with various barriers
may hinder their full and effective participation in society on an equal
basis with others”.
In this way, the CRPD conceptualizes disability as an interactive and
evolving concept (Washington Group on Disability Statistics, 2017, 15).
It indicates that disability should be understood as a complex and dynamic
process that “allows adjustments over time and in different sociocultural
contexts” (Della Fina, 2017a, 97). Human diversity cannot be cast in
stone and is regularly redefined by the recognition of differences and
diverse groups over time.
The human rights model of disability differs from the social model
in six ways (Degener, 2016, 3–14): First, whereas the social model only
explains disability, the human rights model contains moral principles and

7 This is a further illustration of the attempt to avoid norm contestation in order to

prevent (potential) norm weakening (see UN Treaty Collection, n.d.b).
 3 INSTITUTIONALIZING A NEW UNDERSTANDING … 33

values that promote respect for the human dignity of persons with disabil-
ities. Second, the human rights model moves beyond anti-discrimination
policy and civil rights reforms and encompasses human rights and civil
and political as well as economic, social, and cultural rights. Third, the
human rights model does not neglect the experience of impairment and
acknowledges specific living conditions, including pain, deterioration of
quality of life, and early death due to impairment, but also “values impair-
ment as part of the human diversity and human dignity” (Degener, 2016,
8). Fourth, the model values and acknowledges different layers of identity,
such as gender, race, sexuality, and social background. The CRPD thus
recognizes the issue of intersectionality; for example, both children and
women with disabilities have stand-alone articles. Fifth, the human rights
model acknowledges the need for prevention services and makes clear
that the prevention of an impairment can be an important aspect of the
right to health. Finally, it offers a roadmap to reduce the risk of poverty
and offers a human rights approach to development that sees people in
poverty as rights holders. In sum, the human rights model proactively
acknowledges human diversity and promotes inclusion.

3.4 The CRPD and Humanitarian Action

The main purpose of the CRPD is to provide clarity to states about the
legal obligations “to promote, protect and ensure the rights and funda-
mental freedoms of persons with disabilities” (Preamble CRPD). Article
3 therefore lays down eight general principles, which are affirmed in other
human rights instruments as well as previous international texts related to
the persons with disabilities, notably the 1993 UN Standard Rules on the
Equalization of Opportunities for Persons with Disabilities (Della Fina,
2017b, 121). These principles provide guidance to States Parties and
stakeholders “to interpret the Convention’s substantive rights and obli-
gations” and “to achieve the purpose of the CRPD” (Della Fina, 2017b,
120), namely:

• Respect for inherent dignity, individual autonomy including the

freedom to make one’s own choices, and independence of persons;
• Non-discrimination;
• Full and effective participation and inclusion in society;
• Respect for difference and acceptance of persons with disabilities as
part of human diversity and humanity;
• Equality of opportunity;
• Accessibility;
34 C. FUNKE AND D. DIJKZEUL

• Equality between men and women;

• Respect for the evolving capacities of children with disabilities and
respect for the right of children with disabilities to preserve their
identities.

Crucially for humanitarian action, the CRPD contains a separate article on

the protection of persons with disabilities in situations at risk and human-
itarian emergencies. This is one of the rare occasions where the CRPD
differs from general human rights law (Article 11):

States Parties shall take, in accordance with their obligations under inter-
national law, including international humanitarian law and international
human rights law, all necessary measures to ensure the protection and
safety of persons with disabilities in situations of risk, including situations
of armed conflict, humanitarian emergencies and the occurrence of natural
disasters.

The article refers to two international law regimes, IHL and international
human rights law, but the wording “including” makes clear that these are
not the only regimes that apply in situations of risk and humanitarian
emergencies. Refugee law, for example, is also relevant (Motz, 2018,
320). These legal regimes have to be applied simultaneously in crises.
Moreover, unlike IHL, the article extends States Parties’ obligations from
situations of armed conflict to other situations of risk (Motz, 2018, 320).
Another innovative aspect of Article 11 is that it “calls for international
humanitarian law to be read through a human-rights based approach to
disability” (OHCHR A/HRC/31/30, 2015, 3). This, as outlined by the
UN High Commissioner for Human Rights (OHCHR) in 2015, “will
necessarily lead to substantive changes in policy and practice of (donor)
governments” (OHCHR A/HRC/31/30, 2015, 3). However, the exact
extent to which these changes have occurred and whether the critical mass
and wide acceptance exist has never been assessed before.
Initially, the adoption of the CRPD in 2006 did not have a tangible
effect on humanitarian action. A 2015 global survey by Handicap Interna-
tional revealed that only 45 percent of the services provided by human-
itarian actors were also accessible to persons with disabilities (Handicap
International, 2015, 18).8

8 Figures actually differed between 30 and 45% depending on the sector of activities.
 3 INSTITUTIONALIZING A NEW UNDERSTANDING … 35

Yet, the 2016 World Humanitarian Summit in Istanbul marked a

turning point for translating the CRPD into humanitarian policy. The
Summit ended with the launch of the Humanitarian Disability Charter
by which signatories pledge to: (1) Eliminate all forms of discrimination
against persons with disabilities; (2) Promote meaningful participation of
persons with disabilities and their representative organizations in human-
itarian preparedness and response programs; (3) Ensure protection of
persons with disabilities as required by international law; (4) Ensure that
services and humanitarian assistance are equally available for and acces-
sible to all persons with disabilities; and (5) Foster technical cooperation
and coordination among national and local authorities and all humani-
tarian actors. Developed by more than seventy stakeholders in the lead
up to the Summit (Charter on Inclusion of Persons with Disabilities in
Humanitarian Action, 2016), the Charter has meanwhile been endorsed
by 260 actors, including not just thirty-two UN member states, UN
agencies, and the European Union, but also by NGOs, the Interna-
tional Red Cross/Red Crescent Movement, including the International
Committee of the Red Cross, OPDs, and many others (Charter on Inclu-
sion of Persons with Disabilities in Humanitarian Action. 2016). Clearly,
this indicates a heightened awareness of and an explicit policy commit-
ment to humanitarian action that is inclusive of persons with disabilities,
which, as outlined in the Charter, must be “in line with the humanitarian
principles of humanity and impartiality, and the human rights principles
of inherent dignity, equality and non-discrimination” (Charter on Inclu-
sion of Persons with Disabilities in Humanitarian Action, 2016).9 Human
rights and IHL do not always dovetail, but regarding persons with disabil-
ities they actually do, which at first face seems to make the norm cluster
rather robust (ICRC, 2017, 1).
Summing up, the entry into force of the CRPD with its separate Article
11 had fundamental implications for humanitarian action. It demanded
from States Parties to reinterpret IHL, refugee law, and emergency
frameworks through a human rights lens (OHCHR A/HRC/31/30,
2015, 16). Moreover, the principles of participation, accountability, non-
discrimination, and empowerment should be at the center of every human

9 For example, the CRPD recognizes States Parties’ obligations under, inter alia, IHL
and HRL and obliges States Parties to ensure the protection and safety of persons with
disabilities during armed conflict (see CRPD n.d., 10, Art. 11).
36 C. FUNKE AND D. DIJKZEUL

rights-based approach to avoid exclusion and ensure meaningful consul-

tation of persons with disabilities and their representative organizations in
humanitarian responses (OHCHR A/HRC/31/30, 2015).
The Committee on the Rights of Persons with Disabilities issued a
number of recommendations and concluding observations to clarify the
scope of Article 11 (OHCHR A/HRC/31/30, 2015, 4–5). Through its
pronouncements, new standards emerged.10 These include inter alia the
responsibility of states to adopt or reform national emergency response
plans and protocols, and to mainstream disability in their migration and
refugee policies and in all humanitarian aid channels (UN, 2013, 2014a,
2014b, 2015a, 2015b, 2015c, 2015d, 2015e, 2015f; OHCHR, 2015).
The subsequent publication of the non-binding Humanitarian
Disability Charter, an outcome of the World Humanitarian Summit
in 2016, provided an opportunity for states to reaffirm their commit-
ments. Moreover, it gave non-state actors in the humanitarian system
the chance to endorse a rights-based understanding of disability in their
(non-binding) guidelines and tools.

3.5 Other International Agreements

and Policies Relevant to the Protection
of Persons with Disabilities
Partly inspired by the CRPD and the Humanitarian Disability Charter,
recent years have seen the development of even more normative instru-
ments at the international and regional levels that emphasize the impor-
tance and obligation to protect and assist persons with disabilities in
emergencies. The Sendai Framework for Disaster Risk Reduction, the
2030 Sustainable Development Goals, the 2018 Global Compact on
Safe, Orderly and Regular Migration, and the 2018 Global Compact on
Refugees all refer to persons with disabilities.
Moreover, arms treaties relevant to disability inclusion in humanitarian
action, such as the Convention on Cluster Munitions (2008), refer to
the CRPD in their preambles. The Convention on Cluster Munitions
recognizes the inherent dignity of cluster munition victims and prohibits

10 Note that although this is not jurisprudence, it can become part of soft law.
 3 INSTITUTIONALIZING A NEW UNDERSTANDING … 37

their discrimination (Preamble).11 Additionally, the Arms Trade Treaty

(2014) highlights the duty of states to ensure “adequate care, rehabilita-
tion and social and economic inclusion” faced by victims of armed conflict
(Preamble).
The UN Security Council also adopted resolutions that call attention
to the specific needs of persons with disabilities (UNSC, 2013, 2015,
2018). In June 2019, it passed its first resolution 2475 (UNSC, 2019)
on the situation of persons with disabilities in armed conflict and humani-
tarian crises. It emphasized the principle of non-discrimination in relation
to persons with disabilities in emergencies and situations of armed conflict
and further strengthens the normative basis on disability inclusion.
Adopted by consensus, UN Security Council Resolution 2475 recognizes
the Council’s serious concern regarding the disproportionate impact of
armed conflict on persons with disabilities and proposes concrete actions
to address the barriers faced by the world’s largest minority group (Secu-
rity Council Report, 2019). These actions include involving persons with
disabilities in humanitarian action and in conflict prevention, expanding
the capacity and knowledge of the rights of and specific needs of persons
with disabilities across UN peacekeeping and peacebuilding missions,
and improving the system of data collection and reporting on persons
with disabilities (UNSC, 2019). The resolution was proceeded by an
Arria-Formula Meeting12 in December 2018 to discuss how to ensure a
more inclusive and participatory approach toward persons with disabilities
during conflicts and a formal briefing in April 2019 on rights of persons
with disabilities in situations of armed conflict (Human Rights Watch,
2019a). During the latter briefing, the Syrian disability rights activist
Nujeen Mustafa reported on the devastating human consequences of the
Syrian civil war and urged UN member states to do more to ensure that
all humanitarian programs reach persons with disabilities (Human Rights

11 The Convention on the Prohibition of the Use, Stockpiling, Production and Transfer
of Anti-Personnel Mines and on their Destruction (Ottawa Convention) demands from
each state party to provide assistance for the care and rehabilitation, and social and
economic reintegration of mine victims. It was adopted in 1997 before the CRPD. Hence,
it does not explicitly refer to the CRPD and the new human rights understanding of
disability.
12 Arria-Formula Meetings constitute the most flexible meeting format of the Security
Council. Introduced in 1992, it allows Council members to invite specific individuals,
organizations, or non-state institutions for an exchange of views (see Security Council
Report, 2019).
38 C. FUNKE AND D. DIJKZEUL

Watch, 2019b). On the first anniversary of the adoption of Resolution

2475, seventy-nine member states recommitted themselves to strength-
ening efforts to protect and promote the rights of persons with disabilities
in the context of armed conflict (Ruminowicz, 2022, 457).
In addition, the UN Human Rights Council passed a landmark resolu-
tion on climate change and human rights in July 2019. The resolution
calls on governments to adopt a “comprehensive, integrated, gender-
responsive and disability-inclusive approach to climate change adaptation
and mitigation policies” (UN General Assembly, 2019, 4). Furthermore,
it urges them “to increase the participation of persons with disabilities
in climate change responses” at all levels of governance (UN General
Assembly A/HRC/41/L.24, 2019, 5).
In summary, the sheer number of normative instruments with explicit
reference to persons with disabilities leaves no doubt that a rights-based
understanding of disability and the inclusion of persons with disabilities
in humanitarian action have been firmly institutionalized at the interna-
tional level. Interestingly, the publication of the CRPD also resulted in
the translation of its core principles into soft law by the humanitarian
sector, which is quite uncommon; usually norms travel from soft to hard
law but not the other way around (Lohne & Sandvik, 2017, 14).
Yet, to which extent have humanitarian actors translated these binding
and non-binding tools into their policies and implemented them in
practice? Following Deitelhoff and Zimmermann’s (2019, 3) conceptual-
ization of norm robustness, the question emerges whether the normative
claims of these tools also guide the actions of their subscribers. To answer
this question, the following chapter examines the policies of the main
donors and humanitarian organizations, given their relative power and
influence in shaping humanitarian practice.

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 CHAPTER 4

Translating Disability Inclusion

into the Humanitarian System

Abstract This chapter studies how the main international actors in the
humanitarian system—donors, intergovernmental bodies, and humani-
tarian organizations—have translated disability inclusion into their poli-
cies. After a brief introduction, the second part investigates the policies of
the main humanitarian donors. It shows that despite growing attention,
donor governments vary considerably in their approaches to disability
inclusion and need to improve their translation further. The third part
studies translation at the interorganizational level. This part explores how
humanitarian organizations work with the four “must-do” action: (1)
promote meaningful participation of persons with disabilities, (2) address
barriers, (3) exercise data collection and monitoring, and (4) engage in
empowerment and capacity building. It reveals that humanitarian organi-
zations only gradually adapt their practices and struggle with considering
the diversity of the populations they seek to support. The fourth part of
this chapter comparatively describes the measures that individual orga-
nizations have taken so far to translate disability inclusion. Finally, a
comparative analysis reveals that most donor approaches are too abstract
and general for implementation and that the humanitarian organizations
need to develop their capacities for disability inclusion further.

Keywords Norm translation · Humanitarian policy · Humanitarian

donors · Humanitarian organizations · Comparative policy analysis

© The Author(s) 2025 43

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_4
44 C. FUNKE AND D. DIJKZEUL

4.1 Introduction
With translation, the number of actors involved in norm development
multiplies. In the case of disability inclusion, it is useful to look at
donor policies and policies within humanitarian organizations to assess the
impact of the norm cluster. With donors, we can ask whether they have
ratified the CRPD and endorsed the Humanitarian Disability Charter;
how much funding they provide; whether they are committed to the
Organization for Economic Cooperation and Development’s Develop-
ment Assistance Committee (OECD-DAC) Disability Inclusion Marker
and demand gender, age, and disability disaggregated data from the orga-
nizations they fund; whether they have an inclusion policy or strategy
for humanitarian action; and how they evaluate disability inclusion. With
humanitarian organizations, we need to understand how they respond
to the CRPD, the Humanitarian Disability Charter, and donor inclu-
sion policies, as well as how their internal policies reflect and incorporate
inclusion and whether and how these influence programming and evalu-
ation.

4.2 Translation into Donor Government Policies

Sufficient funding is indispensable for principled and inclusive human-
itarian action. In 2020, the largest donors were the United States,
Germany, the European Union, and the United Kingdom, which each
spent at least USD 1.6 billion on humanitarian aid. They accounted for
almost 89% of all funding from the OECD-DAC member states.1 Signif-
icant but smaller donors were, in descending order, Canada, Switzer-
land, Sweden, Australia, Norway, Japan, Denmark, the Netherlands, and
Belgium.2 Most of them officially recognize persons with disabilities as a

1 The DAC is a donor government forum for development and humanitarian issues at
the OECD. DAC donors also carry out peer evaluations of each other (see OECD, n.d.a,
n.d.b).
2 The World Bank is another significant donor that strongly supports disability-inclusive
disaster risk management and development. In 2022, it updated its “Disability Inclusion
and Accountability Framework” (Mcclain-Nhlapo et al., 2022). In this section, we only
focus on those donors that are formally entitled to sign and ratify the CRPD to assess in
how far they meet their obligations. These donors are members of the World Bank. Unlike
the European Union, a regional organization, the World Bank, a multilateral organization,
cannot sign and ratify the CRPD.
 4 TRANSLATING DISABILITY INCLUSION … 45

group in need of protection and assistance. But to which extent do they

embrace a human rights-based model of disability inclusion in humani-
tarian action and endorse the principles of participation, accountability,
non-discrimination, and empowerment?

4.2.1 United States

The United States is by far the largest humanitarian donor. In 2020, it
spent USD 8.8 billion on humanitarian aid worldwide (OECD, n.d.b).
Yet, it is one of four countries which have signed, but not ratified, the
CRPD.3 This is not surprising given that the United States “has one of
the worst treaty ratification records in the world” (Kanter, 2019, 302). In
fact, of nine core human rights treaties, it has ratified only three (Kanter,
2019, 301).4 Nevertheless, the United States Agency for International
Development’s (USAID) initial disability policy is from 1991. At that
time, it was the first donor policy on disability and focused on non-
discrimination. The United States has also played an active role in the
CRPD negotiations and has passed quite a number of federal civil rights
laws to ensure equal opportunity for people with disabilities (American
Journal of International Law, 2007). The US State Department has a
dedicated disability rights team to encourage and assist foreign govern-
ments and civil society organizations to increase their commitment and
capacity to protect the rights, and ensure the inclusion and full partici-
pation of, persons with disabilities. It strives to make disability rights and
integral part of US foreign policy and foreign assistance.5
It is therefore not surprising that the US Bureau of Population,
Refugees and Migration, the humanitarian bureau of the State Depart-
ment, recognizes persons with disabilities as an ‘at-risk’ population and
encourages its international humanitarian partner organizations, such
as the United Nations High Commissioner for Refugees (UNHCR),

3 The other countries are Lebanon, Tajikistan, and Tonga.

4 International Convention on the Elimination of Racial Discrimination in 1994, the
International Covenant on Civil and Political Rights in 1992, and the Convention Against
Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment in 1987.
5 US Department of State, “Promoting the Rights of Persons with Disabilities”. Fact
Sheet, Bureau of Democracy, Human Rights, and Labor, 20 January 2021, retrieved
24 July 2023, from https://www.state.gov/promoting-the-rights-of-persons-with-disabilit
ies/.
46 C. FUNKE AND D. DIJKZEUL

the International Organization for Migration (IOM), the International

Committee of the Red Cross, the United Nations Children’s Fund
(UNICEF), and NGOs, to consider their particular and shared vulner-
abilities. This entails investing additional resources to ensure that persons
with disabilities “are engaged in, participate, and contribute to human-
itarian programming” (US Department of State, 2021). Similarly, the
USAID Office of Foreign Disaster Assistance (OFDA)—now part of the
Bureau of Humanitarian Affairs (BHA)—requires all disaster program-
ming to incorporate measures on disability inclusion in design, imple-
mentation, monitoring, and evaluation. Partners must demonstrate a
comprehensive and consistent approach for disability inclusion at all stages
of the program cycle and are obliged to give detailed descriptions in their
applications (USAID, 2022, 22–23). Furthermore, USAID has estab-
lished compulsory standards for any new or renovation construction
project to allow access by persons with disabilities (USAID, 2019). In
other key policy documents, for example, the first-ever US Strategy on
Women, Peace, and Security (2020), USAID commits itself to frequent
consultations with women’s organizations in countries affected by crisis
and conflict, including organizations of women with disabilities (USAID,
2020). The United States also endorsed the Humanitarian Disability
Charter in 2019, albeit with the additional statement, that it does so
“with the understanding … that the Document is not legally binding”.6
In practice, it strongly encourages the inclusion of persons with disabilities
in its humanitarian policies and gives particular attention to the participa-
tion of persons with disabilities in US-funded programs (USAID, 2019,
16). Currently, USAID is revising its disability policy that will lay out its
vision for the coming years. Yet, details have not become public at the
time of writing.
Overall, the lack of ratification of the CRPD must not be interpreted
as a formal rejection of the norms enshrined in the Convention. It is
rather a reflection of a historical relationship of the United States with
international human rights treaties that some authors attribute to features
in its constitutional system (Bradley, 2010). Although its non-ratification
neither fosters ratification by other states nor acceptance by non-state
actors, it does not necessarily imply a low level of norm robustness at
the national level in the United States.

6 See http://humanitariandisabilitycharter.org/.
 4 TRANSLATING DISABILITY INCLUSION … 47

4.2.2 Germany
Germany is the second largest humanitarian donor. In 2020, it spent USD
3 billion on humanitarian assistance (OECD, n.d.b). Germany was one
of the first countries to sign the CRPD in March 2007 and ratified it in
February 2009. In addition, it is one of 106 parties that have ratified
the CRPD Optional Protocol, which establishes procedures for indi-
vidual and group complaints on violations of the CRPD. Furthermore,
it endorsed the Humanitarian Disability Charter and other normative
tools relevant to the protection of persons with disabilities in situations of
risk and humanitarian emergencies and financially supported the develop-
ment of the IASC Guidelines on Inclusion of Persons with Disabilities in
Humanitarian Action. In 2019, it voted in favor of the groundbreaking
UN Security Council Resolution 2475 on Protection of Persons with
Disabilities in Conflict (UNSC, 2019).
The German Federal Foreign Office (GFFO) is Germany’s humani-
tarian donor. It functions at arm length’s distance from the Ministry of
Development Cooperation. The 2019–2023 Strategy for Humanitarian
Assistance Abroad commits Germany to disability-inclusive humanitarian
action, encourages the participation of persons with disabilities “in all
stages of the programme cycle”, and advocates for the creation of effec-
tive monitoring mechanisms in humanitarian aid that are accessible to
everyone (GFFO, 2019, 41). The German Humanitarian Strategy also
underlines that “[a]ffected populations must, to a greater extent, be
treated as active agents rather than passive recipients of assistance. This
applies particularly to women, young people and persons with disabil-
ities, whose inclusion is particularly limited in most crisis contexts”
(GFFO, 2019, 10). The German Federal Foreign Office also integrates
disability into other sector-specific strategies, including food security,
water, sanitation, and hygiene (WASH), and health.7

7 German Federal Foreign Office (2014) Grundsätze, Kriterien und Best Practices im
Aktionsfeld humanitärer Ernährungshilfe – Leitlinien für die Zusammenarbeit des Auswär-
tigen Amts und seiner Partner in der humanitären Hilfe [Principles, Criteria and Best
Practices in the Field of Humanitarian Food Aid–Guidelines on Cooperation between
the German Federal Foreign Office and its Partners on Food Security in Humani-
tarian Crises]; German Federal Foreign Office (2016) Strategie des Auswärtigen Amts im
Bereich humanitäre Wasser Sanitärversorgung und Hygiene [GFFO Humanitarian WASH
Strategy]; German Federal Foreign Office (2020) Strategie des Auswärtigen Amts zur
Humanitären Hilfe im Bereich Gesundheit [GFFO Strategy on Health in Humanitarian
48 C. FUNKE AND D. DIJKZEUL

Moreover, Germany introduced a gender, age, and disability marker to

ensure disability inclusion in its project-funding application forms for all
humanitarian assistance abroad (Agenda for Humanity, 2020). Germany
has also revised its project proposal document for humanitarian NGOs,
now listing disability as a cross-cutting topic and requests information
from humanitarian organizations on how they consider persons with
disabilities in their project design. An internal guidance note on disability
inclusion supports officers as they review proposals. In addition, Germany
promotes disability mainstreaming in humanitarian action and disaster risk
reduction through project funding, for example, through the “Leave No
One Behind” project series. Together with Jordan, Germany will also
co-host the 2025 Global Disability Summit (Global Disability Summit,
n.d.).
Overall, these steps indicate a greater awareness of the needs, rights,
and specific requirements of persons with disabilities in humanitarian
emergencies, although its impact on actual humanitarian practice is not
yet clear. In line with its size as a humanitarian donor, Germany could
attempt to play a stronger, more structured and strategic role in disability
inclusion, as the United Kingdom has done (see below). To do so, it
would need to build on its policy improvements of the last five years
and construct a more specific inclusion strategy with timelines, objectives,
deliverables, more consistent funding, internal expertise building, regular
impact assessments, and lessons learned exercises.

4.2.3 European Union Institutions

In 2020, the European Union was the world’s third largest donor of
humanitarian assistance, with USD 2.6 billion. The European Union
is party to the CRPD and signatory to the Humanitarian Disability
Charter. In fact, the CRPD is the first international, legally binding
human rights convention that is also open to regional integration organi-
zations (Article 44 (1)).
In 2019, the Directorate General for European Civilian Protection and
Humanitarian Aid Operations (ECHO) of the European Commission
published its guidance note The Inclusion of Persons with Disabilities in
EU-funded Humanitarian Aid Operations in order to promote disability

Action]. The new German Humanitarian Strategy was about to be published when this
book went to print.
 4 TRANSLATING DISABILITY INCLUSION … 49

inclusion in EU-funded relief operations. This note provides tools “to

assess and remove the barriers preventing meaningful access and full and
effective participation of persons with disabilities” and gives concrete
illustrations and examples for humanitarian partners (ECHO, 2019).
In 2021, ECHO also introduced a protection mainstreaming indicator,
which includes disability disaggregated data (ECHO, 2021). Since 2019,
the European Union also applies the disability marker established by the
OECD-DAC to track projects specifically targeting the needs of persons
with disabilities or mainstreaming disability throughout the response
(European Commission, 2020).
In 2022, 259 projects (70.8% of ECHO-funded projects) had consid-
ered and mainstreamed the needs of persons with disabilities (Euro-
pean Commission, 2020), underlining ECHO’s role as a trailblazer to
disability-inclusive humanitarian action. During his visit to the European
Union in March 2022, the Special Rapporteur “was impressed” with
ECHO’s openness and willingness “to factor relevant disability perspec-
tives into their work and their earnest commitment to implementing the
Convention” (UN General Assembly A/HRC/52/32/Add. 1, 2022).
In its most recent Strategy for the Rights of Persons with Disabili-
ties 2021–2030, the European Union also underlines that it “aims to
ensure that the needs of persons with disabilities are adequately addressed
in EU-funded humanitarian aid” (European Commission, 2021, 24).
This involves strengthening the involvement of persons with disabili-
ties and cooperation with civil society, supporting capacity building, and
improving data collection (European Commission, 2021). The Strategy
has a dedicated section (Sect. 6) on promoting the rights of persons
with disabilities globally. Therein, the European Union explicitly commits
to ensuring that the needs of persons with disabilities are adequately
addressed in EU-funded humanitarian aid. The Strategy reflects demands
from lobby groups, including the International Disability and Develop-
ment Consortium (IDDC) and the European Disability Forum (EDF),
which advocated for the implementation of the OECD-DAC Disability
Inclusion Marker in aid operations funded in the European Union
(IDDC, 2019; European Disability Forum, 2020).8

8 IDDC is a global consortium of disability and development NGOs, mainstream

NGOs, and OPDs supporting development work in more than 100 countries worldwide
(IDDC n.d.).
50 C. FUNKE AND D. DIJKZEUL

To facilitate the Strategy’s implementation, a guidance note Leaving

No One Behind: Disability Inclusion in EU External Action followed
in March 2023. This guidance note provides tools and methods for
implementing disability inclusion throughout international cooperation,
including humanitarian action, outlines a policy framework and commit-
ments, gives guidance and examples on designing, implementing, and
monitoring inclusive interventions, and serves as signpost to further
resources, references, and organizations working for disability inclusion
(European Commission, 2023, 7).

4.2.4 United Kingdom

In 2020, the United Kingdom spent USD 1.6 billion on humanitarian
funding (OECD, n.d.b). It ratified the CRPD and its Optional Protocol
in 2009 and is signatory to the Humanitarian Disability Charter. In
2018 and 2019, the United Kingdom led with Poland the negotiations of
the draft text of UNSC Resolution 2475 on the disproportionate impact
of armed conflict on persons with disabilities (Ruminowicz, 2022, 454).
So far, it is the only donor which has taken concrete steps to make
disability an integral part of its humanitarian assistance (Ruminowicz,
2022, 455).
In 2018, the UK’s Foreign, Commonwealth and Development Office
(FCDO; at that time the Department for International Development
(DFID)) published a “Strategy for Disability Inclusive Development
2018–23”. The document, with the catchy title Now is the Time, spells
out five concrete deliverables on Humanitarian Action: first, promote
the routine, systematic collection and use of age, gender, and disability
disaggregated data; second, ensure equitable access to essential humani-
tarian services for all people with disabilities; third, place greater focus on
mental health and psychosocial support; fourth, advocate for the safety
and protection of girls, women, boys, and men with disabilities in human-
itarian crises; and fifth, pursue reform of the international humanitarian
system to ensure disability inclusion is effectively and comprehensively
addressed.9

9 Overall, the strategy consists of four main pillars: (1) Inclusive Education; (2) Social
Protection; (3) Economic Empowerment; and (4) Humanitarian Action. One section deals
with “cross-cutting issues”.
 4 TRANSLATING DISABILITY INCLUSION … 51

In a 2020 evaluation, the FCDO remarked that the COVID-19

pandemic had complicated the timely implementation of the Strategy.
Yet, it indicated progress toward disability inclusion in a number of
fields (FCDO, 2020, 17). Particularly, it highlighted successes in the area
of systematic collection and use of disaggregated data on disability, for
example, in Humanitarian Response Plans (FCDO, 2020, 19).10 Thanks
to the introduction of a “payment by results indicator” on disability data
collection, the United Kingdom pressures leading UN agencies to make
disability inclusion an intrinsic part of their programs (DFID, 2018, 7).
The Delivery Plan does not explicitly mention NGOs, but they will have
to shift their practices and become inclusive when they collaborate with
UN agencies.
Moreover, the United Kingdom plans to introduce a separate section
on inclusion in its reporting framework and actively strives to improve the
evidence base, for example, by allocating an additional £5 million (USD
6.8 million) to test innovative approaches to disability-inclusive humani-
tarian responses (FCDO, 2020, 17). At the international level, the United
Kingdom successfully championed the inclusion of psychosocial support
in the Global Compact on Refugees and in the UNHCR updated guid-
ance on inclusion (FCDO, 2020, 19). The new FCDO Inclusion Strategy,
released in February 2022, intends to achieve no less than equitable access
to essential services for all persons with disabilities affected by crises by
2030 (FCDO, 2020, 28).
Overall, the United Kingdom has the most coherent approach to
disability inclusion of all donors and promotes the implementation of
inclusive programs and projects through (1) incentives, in particular finan-
cial ones, (2) persuasion, and (3) socialization (Finnemore & Hollis,
2016, 449). Worryingly, in 2021, the UK government cut its human-
itarian funding by the most of any major Western country (Wintour,
2021; Worley, 2021).11 Clearly, without reliable funding it will become

10 Coordinated by OCHA, humanitarian organizations jointly prepare these plans to

address an ongoing emergency for specific countries or regions based on so-called Human-
itarian Needs Overviews. Humanitarian Response Plans articulate “the shared vision of
how to respond to the assessed and expressed needs of the affected population” (OCHA
n.d.).
11 Spending for humanitarian assistance decreased from £1,481 million (USD 1,825
million) in 2020 to £719 million (USD 886 million) in 2021 (Save the Children, 2022).
52 C. FUNKE AND D. DIJKZEUL

harder for humanitarian organizations, especially small or medium-sized

humanitarian NGOs, to shift to a more disability-inclusive approach.12

4.2.5 Japan
Japan spent USD 403 million on humanitarian assistance in 2020, making
it the ninth largest humanitarian donor. Taking development funding into
account, it is the fifth largest donor country. Japan has ratified the CRPD
and is signatory to the Humanitarian Disability Charter. Unlike most
other donor states, Japan is a disaster-prone country. It has experienced
countless natural disasters, such as typhoons, earthquakes, and tsunamis
(Ministry of Foreign Affairs of Japan, 2023). Unsurprisingly, Japan gives
special attention to disaster risk reduction in its humanitarian assis-
tance (European Parliament, 2016, 2). In 2015, Japan hosted the Third
UN Conference on Disaster Risk Reduction, which adopted the Sendai
Framework for Disaster Risk Reduction 2015–2030. The Sendai Frame-
work refers to persons with disabilities numerous times, for example,
when stressing their critical role “in the assessment of disaster risk and in
designing and implementing plans tailored to their specific requirements”
(UN, 2015, 23).
Furthermore, Japan’s national legislation contains numerous provi-
sions relevant to the protection of persons with disabilities in the event
of a disaster (UN, 2017, 16). Yet, there is little information on any
commitments regarding the inclusion of persons with disabilities in its
humanitarian assistance abroad. Japan also has not updated its Human-
itarian Aid Policy since 2011 and does not mention “persons with
disabilities” or any other ‘at-risk’ group, including children, women and
girls, single-headed households, older people, or LGBTQI+. Neither does

12 An example of the influence of a budget cut comes from HI’s work in South Sudan
(HI, 2023, 3). HI’s work on disability inclusion and mental health in FCDO’s Human-
itarian Assistance and Resilience program in South Sudan was brought to an unexpected
end in March 2023 due to funding cuts. These cuts came after a series of short contract
extensions and bridge funding that were initially planned by FCDO to allow the activities
to continue until a new successor program could begin. As a result, HI’s activities had
to stop and continuity to any future program has not been achieved. These cuts came
at a time when the 2023 South Sudan Humanitarian Needs Overview (HNO) indicated
that more than 9.4 million people are in need of humanitarian assistance, of which at
least 1.5 million (16%) were people with disabilities. The FCDO’s own equalities impact
assessment shows that its cuts have negatively affected disability inclusion in South Sudan.
Still, more cuts may occur in the aftermath of COVID-19 and Brexit.
 4 TRANSLATING DISABILITY INCLUSION … 53

Japan’s state report to the Committee on the Rights of Persons with

Disabilities refer to measures that could strengthen disability inclusion in
humanitarian assistance abroad.
Nevertheless, Japan strongly supports strengthening coordination
between humanitarian assistance and development as well as the imple-
mentation of the “Build Back Better” concept (European Parliament,
2016, 2).13 Moreover, the Japanese International Cooperation Agency
(JICA), which is also responsible for emergency disaster relief, has
Thematic Guidelines on Disability and Development that focus on empow-
erment and mainstreaming of persons with disabilities (JICA, 2009,
updated in 2015). Reference to persons with disabilities can also be found
in its 2018 White Paper on Development Cooperation and in its 2020
Annual Report. These documents provide examples of Japan’s support
to persons with disabilities, for instance, by improving early detection and
early medical treatment system for children with disabilities in Palestine
(Ministry of Foreign Affairs of Japan, 2018, 56), or cooperating with the
Department of Refugee Affairs of the Palestine Liberation Organization
to enable participation of persons with disabilities in refugee camps (JICA,
2020, 37). Yet, none of these documents indicates an overall strategic
approach toward disability inclusion in Japan’s humanitarian assistance
abroad.

4.2.6 Other Donor Countries and Their Humanitarian Assistance

Abroad
Besides these major donors, other countries spent each between USD 591
million (Canada) to USD 220 million (Belgium) on humanitarian action
in 2020 (OECD, n.d.b). All of them have ratified the CRPD and are
signatory to the Humanitarian Disability Charter.
Two Nordic states—Norway and Denmark—emphasize their human
rights perspective to humanitarian action, and list persons with disabil-
ities as a “vulnerable” or “at-risk” group that deserves attention in
humanitarian crises (e.g., Norwegian Ministry of Foreign Affairs, 2018).
Norway has stepped up its efforts to become more disability-inclusive
in recent years by making reporting on inclusion mandatory for its
funded operations and by requiring organizations to say how they plan

13 “Building Back Better is an approach to post-disaster recovery that reduces vulner-

ability to future disasters and builds community resilience to address physical, social,
environmental, and economic vulnerabilities and shocks” (Global Facility for Disaster
Reduction and Recovery, n.d., 2).
54 C. FUNKE AND D. DIJKZEUL

to include persons with disabilities (European Disability Forum, n.d.b).

Moreover, Norway was one of the rotating co-chairs of the Global Action
on Disability (GLAD) Network—a donor coordination network, which
promotes disability-inclusive development and humanitarian action—and
hosted the 2022 Global Disability Summit (European Disability Forum,
n.d.b). Denmark’s new strategy for development cooperation The World
We Share (2021–2025: 14) strives to secure “the rights and dignity of
marginalised groups” by fighting “discrimination, stigma, and persecu-
tion of minority groups” and explicitly pursues the objective to “provide
a voice for persons with disabilities” (Ministry of Foreign Affairs of
Denmark, n.d.).
Finland is not among the ten largest humanitarian donors. Yet, since
2014, it “has consistently contributed the largest share of its Offi-
cial Development Assistance (ODA) to disability-inclusive aid projects”
(Walton, 2020, 10).14 Indeed, Finland’s humanitarian policy focuses on
vulnerable groups and supports greater inclusion of persons with disabil-
ities (Ministry of Foreign Affairs of Finland, n.d.). Despite its relatively
small size as an international donor, Finland has become one of the
leading countries supporting disability inclusion.
Along with Finland, Australia, Sweden, and Belgium, Canada appears
in the top five in terms of its share of disability-inclusive ODA. Between
2014 and 2018, it contributed between 2.6 and 1.5% of its ODA
to disability inclusion (Walton, 2020, 11). However, Canada, just like
Sweden and Switzerland, does not explicitly mention persons with disabil-
ities in its official information on humanitarian assistance. The strategic
priorities of these three countries lie in promoting gender equality,
gender-sensitive programming, women’s empowerment, and protection
from gender-based violence, and in the case of Switzerland, more broadly
on the protection of the civilian population (Government of Canada
2020; Ministry of Foreign Affairs of Sweden, 2020; Schweizerische
Eidgenossenschaft, 2021). Switzerland, with support from CBM, has
nevertheless initiated a national assessment of the CRPD implementation
with a focus on disability inclusiveness of development and humanitarian
aid as a first step to align its humanitarian funding and policies with global
standards (CBM Switzerland, 2021; European Disability Forum, n.d.a).

14 ODA comprises all aid reported to the OECD, including humanitarian assistance.
Figures that clearly distinguish between development and humanitarian aid are not
available.
 4 TRANSLATING DISABILITY INCLUSION … 55

The Netherlands requires its partners to implement the Humanitarian

Inclusion Standards for Older People and People with Disabilities and to
report their results in compliance with these minimum standards (Dutch
Ministry of Foreign Affairs, 2019, 12). However, like most other donors,
it does not have a detailed disability inclusion strategy.
Australia was one of the most committed supporters of disability inclu-
sion in humanitarian assistance and, as mentioned, ranks among the five
most disability inclusion-focused donor countries (Walton, 2020, 11).It
was one of the first donor countries to have a stand-alone strategy
for making development assistance and humanitarian action disability-
inclusive. Its first strategy Development for All: Towards a Disability-
Inclusive Australian Aid Program was launched in 2009 (Dodds &
Clarke, 2022). In 2015, the Department of Foreign Affairs and Trade
(DFAT) developed a Strategy for Strengthening Disability Inclusive Devel-
opment in Australia’s Aid Program (2015) with consistent core funding
of AUD 12.9 million (approximately USD 8.5 million) per year (ADDC
and CBM, 2022, 3). It named disability as one of five priority areas in its
2016 Humanitarian Strategy. The government committed itself to three
main objectives: (1) supporting inclusive humanitarian assistance and
disaster risk reduction by considering and including persons with disabil-
ities in disaster risk reduction and humanitarian planning; (2) working to
integrate disability into respective response frameworks; (3) and building
the disaster resilience of persons with disabilities through programs and
partnerships in the Indo-Pacific region.15 Moreover, Australia helped to
establish the GLAD Network. In a number of ways, Australia supports
the inclusion for persons with disabilities in its humanitarian assistance,
for example, by promoting rehabilitation services and through research
on protecting persons with disabilities in camps for internally displaced
persons and refugees (Australian Government Department of Foreign
Affairs & Trade, 2015, 24). As part of the Australian Humanitarian Part-
nership Rohingya Refugee response in Bangladesh, for instance, nine
Self-Help Groups and Disability Support Committees formed to represent
the rights and voices of persons with disabilities (Government of Australia,
2023, 3). Together with the European Union (in particular ECHO),
Finland, Germany, and Luxemburg, Australia also funded the formula-
tion of the IASC Guidelines on Inclusion of Persons with Disabilities in

15 See DFAT (2015, 25). There was no information available on disability inclusion in
the humanitarian strategies of Belgium, Saudi Arabia, and the United Arab Emirates.
56 C. FUNKE AND D. DIJKZEUL

Humanitarian Action (IASC, 2019b). Recently, however, Australia has

reduced its core budget for disability inclusion by 25%. In 2020–2021,
the government allocated AUD 12.1 million (around USD 7.9 million)
to disability inclusion in its aid program, but decreased the amount to
AUD 9.6 million (around USD 6.3 million) in 2021–2022 and 2022–
2023 (ADDC and CBM, 2022, 4; CBM Global, 2022). Furthermore,
the development of a new Development for All Strategy has stagnated
because numerous disability inclusion roles within DFAT remained unful-
filled for long periods throughout 2020 and 2021 (ibid). Australia is now
left without a strategic vision on disability-inclusive humanitarian action.
Table 4.1 summarizes the findings of this section. In the next section,
we will explore how the humanitarian sector has responded to the
changing donor policies and the extent to which the emergence of the
IASC Guidelines have strengthened the robustness of disability inclusion
as a human rights issue at the interorganizational level. Subsequently, we
will look at the ways in which individual humanitarian organizations have
translated the disability norm cluster.

4.3 Translating the Inclusion Norm

Cluster at the Interorganizational Level
This section examines the translation of the inclusion norm cluster at the
interorganizational level of the humanitarian sector. When donors update
their policies to make disability a more integral part of humanitarian assis-
tance and a requirement for funding humanitarian organizations, they can
influence the humanitarian sector in various ways. They can, for example,
promote inclusion through their reporting frameworks, setting objectives,
developing gender, age, and disability markers—or adapting the OECD-
DAC disability inclusion marker, demanding evaluations, encouraging
knowledge sharing of good practices and lessons learned, and supporting
research to enhance the evidence base. In these ways, donors can push
humanitarian organizations and their networks to become more disability-
inclusive, although virtually always more work is necessary to translate
these demands into a concrete policy agenda and implementation.
In general, the humanitarian sector has undergone a remarkable profes-
sionalization since aid agencies began to expand “their activities from
emergency relief to include goals such as development, postconflict recon-
struction, peacebuilding and human rights” (Barnett, 2018, 314). This
Table 4.1 Overview of donor positions on disability-inclusive Humanitarian Action, in descending order based on the
amount of overall funding

Largest CRPD Endorsed Amount Committed to Demand age, Inclusion strategy or policy on Evaluations
donor states humanitarian of overall using gender, disability disability inclusion in on disability
countries party disability funding OECD-DAC disaggregated data humanitarian action inclusion in
charter in 2020 disability from partners operations
(US$ inclusion funded
million) marker

USA No Yes 8,835 No Yes No No

information information
available available
Germany Yes Yes 2,971 Yes No (only age and No No
4

gender, but information

indication of the available
share of persons
with disabilities in
target group
required)
EU Yes Yes 2,577 Yes Yes Yes, a general disability No
Institutions strategy with a dedicated information
section on promoting the available
rights of persons with
disabilities globally, as well as
complementary guidance
notes on “Disability Inclusion
in EU External Action”
(2023)’ and on the “Inclusion
of Persons with Disabilities in
EU-funded humanitarian Aid
TRANSLATING DISABILITY INCLUSION …

Operations (2019)
57

(continued)
 58

Table 4.1 (continued)

Largest CRPD Endorsed Amount Committed to Demand age, Inclusion strategy or policy on Evaluations
donor states humanitarian of overall using gender, disability disability inclusion in on disability
countries party disability funding OECD-DAC disaggregated data humanitarian action inclusion in
charter in 2020 disability from partners operations
(US$ inclusion funded
million) marker

UK Yes Yes 1,631 Yes Yes Yes Yes

Japan Yes Yes 403 No No information No No
available information
available
C. FUNKE AND D. DIJKZEUL

Canada Yes Yes 591 Yes Yes No No

information
available
Switzerland Yes Yes 588 Yes No information No No
available information
available
Sweden Yes Yes 540 Yes No (only age and No Yes
gender)
Australia Yes Yes 476 Yes Yes Yes, but expired in 2021 Yes
Norway Yes Yes 473 Yes Yes (albeit with No No
the caveat “where information
data is available”) available
Largest CRPD Endorsed Amount Committed to Demand age, Inclusion strategy or policy on Evaluations
donor states humanitarian of overall using gender, disability disability inclusion in on disability
countries party disability funding OECD-DAC disaggregated data humanitarian action inclusion in
charter in 2020 disability from partners operations
(US$ inclusion funded
million) marker

Denmark Yes Yes 375 Yes No information No, but emphasis on No

available protecting the rights of girls information
and women along with available
vulnerable and marginalized
groups in its general strategy
for development cooperation
Netherlands Yes Yes 351 No No (only age and No No
4

gender) information
available
TRANSLATING DISABILITY INCLUSION …
59
60 C. FUNKE AND D. DIJKZEUL

professionalization went hand in hand with the publication of new stan-

dards and guidelines that aim to inform humanitarian action, improve its
effectiveness, and enhance accountability toward affected populations.16
The most prominent are The Code of Conduct for the International Red
Cross and Red Crescent Movement and NGOs in Disaster Relief , the Core
Humanitarian Standard, and the Sphere Humanitarian Charter and
Minimum Standards in Humanitarian Response (“Sphere Handbook”).
In addition to these general standards, which are now so commonly
applied in the humanitarian sectors that they can be considered a form
of soft law, the IASC endorsed a variety of specific tools, for example, the
Gender Handbook in Humanitarian Action (2006), Guidelines on Mental
Health and Psychosocial Support in Emergency Settings (2007), and the
Framework on Durable Solutions for Internally Displaced Persons (2010).
However, none of these explicitly highlighted persons with disabili-
ties, thus inadvertently contributing to their invisibility and neglect in
humanitarian action.
This changed when the UN Secretary-General released his 2016
Agenda for Humanity before the World Humanitarian Summit. The
Agenda for Humanity took a page from the 2030 Agenda for Sustainable
Development and its Sustainable Development Goals, when it used the
concept Leave No One Behind, which entailed the commitment to reach
everyone in situations of conflict, disaster, vulnerability, and risk, including
persons with disabilities. Soon after the Summit and concomitant launch
of the Humanitarian Disability Charter, general and sector-specific stan-
dards and policy frameworks with a clear disability focus emerged. These
include the Humanitarian Inclusion Standards for Older People and
People with Disabilities (Age and Disability Consortium, 2018), the
Disability Inclusion and Accountability Framework of the World Bank
(World Bank Group, 2018), and the UN Disability Inclusion Strategy
(UN, n.d.).
Furthermore, seven UN entities designed the Guidance on Strength-
ening Disability Inclusion in Humanitarian Needs Assessments and
Response Plans (2019) with support from DFID.17 This Guidance details

16 For a discussion on the relationship of humanitarianism and human rights, see

Barnett (2018).
17 These are UNICEF, the World Food Programme (WFP), UNHCR, OCHA, IOM,
WHO, and the Central Emergency Response Fund (CERF). CERF is a global revolving
fund, managed by OCHA, that donors replenish annually. Recently, it added a grant
 4 TRANSLATING DISABILITY INCLUSION … 61

concrete steps for including persons with disabilities in the Humanitarian

Needs Overview process and concludes with a comprehensive annex,
which offers tips on conducting inclusive key informant interviews, intro-
duces disability data survey instruments, and explains their applicability
in humanitarian settings. Moreover, it gives examples of existing needs
assessment tools and output-level indicators and contains key resources
for inclusion of persons with disabilities (DFID, 2019).
In a parallel process, the Sphere Project on Minimum Standards in
Humanitarian Action updated its widely used handbook with minimum
standards for humanitarian action. The 2018 edition also focuses on the
inclusion of persons with disabilities in humanitarian action and promotes
the collection and use of disaggregated data by disability status (Sphere
Association, 2018).18
In 2015, the International Federation of Red Cross and Red Crescent
Societies (IFRC) adopted its Strategic Framework on Disability Inclusion.
The Framework outlines three core objectives: (1) ensure that all actions,
policies, and internal practices are non-discriminatory toward persons with
disabilities; (2) increase the participation of persons with disabilities across
the Movement; and (3) promote disability-inclusive practices (Council of
Delegates of the International Red Cross and Red Crescent Movement,
2015).
In addition, the International Committee of the Red Cross released
its Vision 2030 on Disability in 2020, providing a self-critical reflection
of its inclusion record, and explicitly remarks that, “we have been slow
in implementing disability-inclusive programming and activities in our
humanitarian action” (ICRC, 2020, 4). To generate change, the Interna-
tional Committee of the Red Cross seeks to adapt its practices through the
routine collection, analysis, and use of data disaggregated by disability (as
well as by gender and age), the recruitment and integration of staff with
disabilities, and the accessibility of headquarters and delegations (ICRC,
2020). In 2022, it published its inclusive programming policy (ICRC,
2022).
The most influential tool to guide disability-inclusive humanitarian
action is the 2019 IASC Guidelines on Inclusion of Persons with Disabili-
ties in Humanitarian Action. Developed in a participatory and inclusive

facility. Country-Based Pooled Funds function in a similar way as CERF but only for a
specific country.
18 This edition includes the Core Humanitarian Standard, another general stan-
dard, which consists of nine commitments to enhance the quality, responsiveness, and
accountability of humanitarian action.
62 C. FUNKE AND D. DIJKZEUL

process, the IASC Guidelines reflect the input of more than six hundred
stakeholders across the disability, humanitarian, and development sectors.
These stakeholders participated in monthly meetings, global, regional,
and thematic consultations, and technical workshops as well as an online
survey. A time-bound Task Team on Inclusion of Persons with Disabilities
in Humanitarian Action consisting of a diverse membership from seventy-
two organizations and public entities participated in the drafting process
(IASC, 2018). With the publication of the IASC Guidelines, the Task
Team dissolved (see Table 4.2).
The IASC Guidelines have now been translated into Arabic, Spanish,
French, and their respective braille and easy-to-read versions. They define

Table 4.2 Organizational changes in disability inclusion at the global level

With the end of Task Team, a new Reference Group on Inclusion of Persons with
Disabilities in Humanitarian Action (usually shortened to Disability Reference
Group—DRG) established itself in 2020 to advance disability-inclusive humanitarian
action. The DRG is a central platform to support the dissemination of the IASC
Guidelines and other guidance materials (DRG, 2022, 1–2). Its work rests on three
pillars, namely: (1) operationalization; (2) participation; and (3) integration. The first
pillar is concerned with the operationalization of guidelines and frameworks for
disability-inclusive humanitarian action through technical support. The second one aims
to strengthen the participation of OPDs in humanitarian action. Finally, the third pillar
seeks to integrate, i.e., mainstream inclusion of persons with disabilities across global
processes, including setting priorities for the IASC work plans. The DRG is not an
associated entity of the IASC but the three DRG co-chairs, the International Disability
Alliance (IDA), CBM Global, and UNICEF, maintain working relations with the IASC
Task Force 2 on Accountability to Affected People
The IASC Task Force 2—co-chaired by IFRC, WFP, and the Core Humanitarian
Standard Alliance—works toward systematic participation of affected communities, as
well as timely and relevant response to feedback and needs voiced by affected
communities. The Task Force is currently developing a plan to engage with donors.
Yet, it is still too early to assess its impact.a
a The work of this Task Force builds on the outputs of the Results Group 2 on Accountability and
Inclusion, co-led by UNICEF and UNHCR. The Results Groups worked under the Operational
Policy and Advocacy Group (OPAG), a forum driving the normative and strategic policy work of
the Inter-Agency Standing Committee. They were tasked to deliver normative outputs and guid-
ance to humanitarian actors in cross-cutting issue areas, including (1) Operational Response, (2)
Accountability and Inclusion, (3) Collective Advocacy, (4) Humanitarian-Development Cooperation,
and (5) Humanitarian Financing (IASC 2019c, 8–9). Results Group 2 established an accountability
and inclusion portal, a service directory with information on who is doing what and where on
accountability and inclusion (see IASC Accountability and Inclusion Resources Portal, n.d.), a results
tracker to measure collective accountability and inclusion, and an accountability framework for field
leaders to ensure that collective responses are accountable and inclusive. The Result Group 2 on
Accountability and Inclusion completed its mandate on 31 March 2022.
 4 TRANSLATING DISABILITY INCLUSION … 63

four objectives: (1) provide practical guidance on disability inclusion in

humanitarian programming and coordination; (2) increase the capacity
of humanitarian actors; (3) raise their awareness on their accountability
to include persons with disabilities; and (4) increase the participation of
persons with disabilities in preparedness, response, and recovery. In short,
“they are designed to promote the implementation of quality humani-
tarian programmes … and to establish and increase both the inclusion of
persons with disabilities and their meaningful participation in all decisions
that concern them” (IASC, 2019a, 1).
More than just being a practical tool for aid workers, the IASC Guide-
lines also contribute to clarifying the meaning of the international norms
on disability inclusion for daily practice and describe how they relate to
and build on existing and more general standards and norms.19 They
explicitly refer to the CRPD and its Article 11 and they contribute
to a corpus of soft law on disability inclusion. In doing so, the IASC
Guidelines further reinforce the institutionalization of a rights-based
understanding of disability in humanitarian action at the international
level. Crucially, they advocate for a twin-track approach that combines
inclusive mainstream programs with targeted interventions for persons
with disabilities. Furthermore, they spell out the four “must-do” actions,
which apply to all humanitarian sectors and contexts namely: (1) promote
meaningful participation; (2) remove barriers; (3) empower persons with
disabilities and support them in developing their capacities; and (4)
disaggregate data for monitoring inclusion.
Each of these four actions relates to at least one relevant Article of the
CRPD. For example, Article 19 defines the right to independent living
and inclusion in the community; Article 29 introduces the right to partic-
ipation in political and public life; Article 9 on Accessibility demands the
identification and elimination of obstacles and barriers; Article 10 guaran-
tees the right to life, which in humanitarian crises, often depends on the
absence of barriers to access life-saving assistance; Article 31 on Statistics
and Data Collection demands disaggregated data to assess the implemen-
tation of the obligations under the CRPD. Although there is no explicit
article on empowering and supporting persons with disabilities, it is of
course the thrust of the CRPD and can in particular be derived from
Articles 3 and 4 on general principles and general obligations.

19 Such as the Core Humanitarian Standard, Sphere Handbook, and Humanitarian

Inclusion Standards for Older People and People with Disabilities.
64 C. FUNKE AND D. DIJKZEUL

The four “must-do” actions clearly show that the disability inclusion
norm, like many others, consists of a cluster of (component) norms.
Article 11 on the protection of persons with disabilities in Situations
of Risk and Humanitarian Emergencies cannot become effective without
considering the other relevant articles of the CRPD and their translation
and implementation. Indeed, it is more accurate—and more conducive
for the empirical study of diversity and inclusion—to speak of a “dis-
ability inclusion norm cluster” rather than a single disability inclusion
norm. The following sections elaborate the four “must-do” actions and
indicate persisting gaps in humanitarian practice.

4.3.1 Promoting Meaningful Participation

In line with the CRPD, the IASC Guidelines promote the meaningful
participation of persons with disabilities in all stages of the response. In
concrete terms, persons with disabilities must participate in all processes
that assess, plan, design, implement, monitor, or evaluate humanitarian
action. Moreover, the IASC Guidelines require humanitarian organiza-
tions to recruit persons with disabilities as staff, and to collaborate with
OPDs (IASC, 2019a, 20). In contexts where OPDs are still absent or
scarce, they are required to encourage their establishment. OPDs are
usually run by persons with disabilities and aim to represent their inter-
ests, raise awareness, and advocate for their rights (IASC, 2019a, 33).
Furthermore, OPDs offer a platform for persons with disabilities to articu-
late their needs and experiences, share information, make claims, promote
access and participation in society, and challenge negative beliefs and
stigmas (Cobley, 2018, 75–76). However, collaborating with OPDs will
not automatically improve the effectiveness and accountability of humani-
tarian action. First, the mission and goals of the OPDs may not align with
the humanitarian principles. Second, they may not represent all persons
with disabilities, but only persons with specific types of impairments.
Third, OPDs are usually clustered in capitals and may have limited contex-
tual knowledge of the situation and interests of persons with disabilities
across the whole country. Fourth, in refugee contexts, OPDs may only
represent the interests of persons with disabilities in host communities
and not those of the refugees (see CBM et al. 2019).
More generally, research reveals significant knowledge gaps regarding
the participation of persons with disabilities in humanitarian crises
 4 TRANSLATING DISABILITY INCLUSION … 65

(ELRHA, 2021). There is no clear evidence of people with disabili-

ties regularly contributing to decision-making and planning in human-
itarian responses. In settings where they do participate, there is hardly
any “documented evidence on the impacts and outcomes of increased
participation of persons with disabilities in decision-making”.In addition,
the role and effectiveness of OPDs in enabling meaningful partici-
pation is poorly understood (ELRHA, 2020). In some humanitarian
settings, persons with disabilities have not been able to form OPDs,
which means that humanitarian actors cannot rely on local platforms
for cooperation (Funke & Dijkzeul, 2021b, 79). The reasons for the
absence of OPDs vary across different humanitarian contexts (Funke &
Dijkzeul, 2021b, 78–79). In the camps in Cox’s Bazar, for example, the
Bangladeshi authorities do not allow the Rohingyas to establish organi-
zations, including OPDs, because they officially consider the Rohingyas
“forcibly displaced nationals from Myanmar” instead of refugees. This
stance taken by the authorities fosters the continuation of the supposition
that the Rohingyas will be able to return to Myanmar soon and therefore
do not need to organize themselves. However, informal self-help groups
and disability committees have been formed with support of the human-
itarian community and financial assistance from Australia (Government
of Australia, 2023, 3). But how and to which extent these groups and
committees can promote the meaningful participation of persons with
disabilities in these camps remains unclear.
At present, humanitarian organizations mainly limit themselves to
“engaging” persons with disabilities in the humanitarian response, which
entails asking persons with disabilities about their needs and inviting them
to attend meetings and consultations (Funke & Dijkzeul, 2021b, 23).
Interviews with humanitarian staff from South Sudan reveal that persons
with disabilities are rarely involved in program development (Funke &
Dijkzeul, 2021a, 29). Moreover, the COVID-19 pandemic contributed
to their exclusion in cluster coordination meetings when these shifted
to online-only formats, due to limited internet access of smaller NGOs,
including OPDs, and/or lack of reasonable facilitation, such as sign
language interpreters (Funke & Dijkzeul, 2021a, 30). Furthermore, espe-
cially persons with intellectual impairments and/or psychosocial needs
are often excluded from the humanitarian response (OCHA, 2021, 31).
In Somalia, for instance, “persons with disabilities are not meaning-
fully consulted regarding access to services, and lack access to feedback
mechanisms” (OCHA, 2021, 31).
66 C. FUNKE AND D. DIJKZEUL

Undoubtedly, this violates international standards: it is a violation of

the obligations of the CRPD that have been translated into these interna-
tional standards. As mentioned, the CRPD and Humanitarian Inclusion
Standards, the IASC Guidelines, and related tools demand from humani-
tarian organizations conscious efforts to involve persons with disabilities,
their families, and OPDs in all stages of humanitarian programming
(ELRHA, 2020, 26). This often requires significant investments in
capacity building and empowerment of persons with disabilities so that
they increase their confidence as active contributors to society, learn to
organize themselves in disability committees, OPDs, or self-help groups,
and can contribute directly to the response (Funke & Dijkzeul, 2021a,
53, 2021b, 43; CBM International, 2019, 11). Simultaneously, humani-
tarian actors must build their internal capacities on inclusive humanitarian
action, which can be resource-intensive and time-consuming.
Renewed efforts in embedding “meaningful participation” of affected
populations into humanitarian practice demonstrate that humanitarian
organizations (only) gradually adapt their practices (Funke & Dijkzeul,
2021a, 63). Examples include the “participation revolution” work stream
of the Grand Bargain (2017), which inter alia seeks to develop common
standards and a coordinated approach for community engagement and
participation with an emphasis on inclusion of the most vulnerable
(IASC n.d.) and the participation commitment in the Core Humani-
tarian Standard, which requires the humanitarian response to be based
on communication, participation, and feedback. In the light of these
broader requirements and ongoing changes in the humanitarian system,
it will be considered increasingly inappropriate to exclude persons with
disabilities from coordination mechanisms, intersectoral needs assessments
and decision-making. Yet, persons with disabilities are not the only ones
that are being left behind in humanitarian action. Ideally, humanitarian
actors consider the whole diversity of the population and pay attention to
underrepresented groups, such as indigenous persons, women and girls,
single-headed households, LGBTQI+ persons, or older people or chil-
dren (IASC, 2019a).20 These issues all intersect with disability inclusion.
Realizing such an ambitious approach to diversity and inclusion requires
overcoming several barriers.

20 The IASC Guidelines stress this point in numerous chapters.

 4 TRANSLATING DISABILITY INCLUSION … 67

4.3.2 Addressing Barriers

Persons with disabilities face multiple barriers that increase their vulnera-
bilities. These barriers derive from negative attitudes, physical obstacles in
the environment, poor communication, and from institutionalized prac-
tices that discriminate against persons with disabilities (IASC, 2019a,
8). Humanitarian organizations need to identify these attitudinal, envi-
ronmental, and institutional barriers, as well as corresponding enablers,
in different crisis-contexts, and based on these insights, develop specific
strategies to facilitate an inclusive response (IASC, 2019a).
The humanitarian community has made some progress in this regard.
The work of inclusion-focused NGOs has led to change in reporting
about barriers for persons with disabilities.21 They piloted barriers and
facilitator assessments together with UN agencies and clusters in various
contexts (e.g., HI and WFP, 2021).22 Moreover, they actively lobbied for
a greater focus on persons with disabilities in the global and country-based
Humanitarian Needs Overviews23 and Humanitarian Response Plans.24
Since 2020, the Global Humanitarian Needs Overviews increasingly
describe specific requirements and persisting needs across all humani-
tarian sectors. Humanitarian Needs Overviews also have begun to pay
closer attention to the barriers that prevent persons with disabilities from
accessing services and fully participating in the humanitarian responses.25
Considering that these Needs Overviews rarely mentioned persons with
disabilities before the 2016 Global Humanitarian Summit, this is a step
forward. Still, more barrier and facilitator analyses are needed.

21 In South Sudan, for example, HI established a partnership with IOM for its Displace-
ment Tracking Matrix to undertake an assessment of the level of access to services and
barriers faced by persons with disabilities in various locations.
22 E-Mail exchange with Ulrike Last (HI).
23 HNOs are a joint needs assessment tool. They support the Humanitarian Country
Team—and by extension, all interested actors—in developing a shared understanding of
the impact and evolution of a crisis and inform response planning to help people in
need (see OCHA Knowledge Base, 2024). Increasingly, the HNOs and HRPs are being
combined into the Humanitarian Needs and Response Plans (HNRP).
24 See footnote 10.
25 However, the extent to which Humanitarian Needs Overviews in all country opera-
tions reflect the needs, risks, and specific requirements of persons with disabilities requires
more research.
68 C. FUNKE AND D. DIJKZEUL

So far, evaluations, assessments, or case studies on how humanitarian

organizations move beyond the identification of barriers and actually
address persisting protection gaps and obstacles to inclusion are rare. Field
research on the Rohingya refugee response (Funke & Dijkzeul, 2021b)
suggests that whereas humanitarian organizations are generally aware of
the common and more obvious barriers and multiple forms of discrimina-
tion that persons with disabilities experience in the humanitarian response,
only limited capacities exist to prevent and overcome them. Organiza-
tions and their staff members often lack the expertise, time, or funding to
identify, design, and implement strategies to address barriers and main-
stream disability into their operations (CBM International et al., 2019,
32). Of course, this is no excuse for excluding persons with disabilities and
violating normative commitments. Ideally, this awareness should motivate
organizations to train and sensitize their staff on disability-inclusive prac-
tices and for donors to make additional funds available for organizations
to invest in capacity building. But for many this feels like yet another task
on top of many other challenges to their already demanding humanitarian
response. The shift from policy translation to actual implementation on
the ground is difficult (UN Special Rapporteur on the Rights of Persons
with Disabilities, 2018, 30).

4.3.3 Data Collection and Monitoring

Besides participation and the removal of barriers, the collection and
use of quantitative and qualitative data on disability is essential for a
disability-inclusive humanitarian response (Handicap International, 2021,
2). Although repeatedly mentioned in global standards, guidelines,
Humanitarian Needs Overviews and Humanitarian Response Plans, and
increasingly demanded by donors, data on disability is often flawed or
simply not available (Collinson, 2020, 16). This data should include
information on the prevalence of disability within the target popula-
tion, barriers and enablers of inclusion, the risks of discrimination and
marginalization, as well as assessments of the capacities of persons with
disabilities to take informed decisions and contribute meaningfully to the
response.
Developing countries, where most humanitarian crises occur, tended
to focus on a narrow set of impairments, using medical models of
disability that have stigmatizing labels and definitions (WHO and World
Bank, 2011; UNICEF, 2018, 14). Hence, humanitarian actors usually
 4 TRANSLATING DISABILITY INCLUSION … 69

could not build on the official country figures that were supposed to
measure the prevalence of disability; the definitions and methodologies
for the collection of data were not consistent among states. Moreover,
data collection can be extremely challenging in insecure regions with
limited access and if statistical information is available, it is rarely regu-
larly updated (WHO, 2022, 22).26 Until recently, many national statistics
suggested that the percentage of persons with disabilities is lower than the
16% estimated by WHO (WHO, 2022, 2–3).27 Even in countries where
reliable figures on disability existed, data may no longer be accurate and
useful after the outbreak of armed violence or the occurrence of a natural
disaster (UNICEF et al., 2017, 7).
In recent years, humanitarian actors have begun to collect their own
data on persons with disabilities (Leonard Cheshire and Handicap Inter-
national, 2018, 5). Yet, until recently, they predominantly used binary
“yes–no” questions rather than data collection methods that reflect the
multi-dimensional nature of disability (Leonard Cheshire and Handicap
International, 2018, 5; see below). Such binary data on disability does
not necessarily help aid agencies to gain a better understanding of the
specific assistance and protection needs of persons with disabilities, the
barriers they encounter, and the services they require, as well as the skills
they bring with them.

26 For example, the last census in what is now South Sudan took place in 2008
(Disability Data Portal, 2024). In the DR Congo, the last census was taken in 1984
(Africanews, 2022).
27 According to the UN Disability Statistics Database the percentage of persons with
disabilities in developing countries is supposedly low. Afghanistan, Angola, the Philippines,
and Yemen, for example, claim that no more than 2–3% of their population have some
kind of disability. In contrast, in Austria (18.4%), the United States (12.8%), and Canada
(13.7%) these figures are significantly higher. Sweden even estimates that the percentage of
persons with disabilities amounts to 35.2% (UN Statistics Division, n.d.). Not all countries
have provided official figures. As indicated in footnote 1, it is estimated that almost 79%
of the Afghan population has a disability (Asia Foundation 2019, 18). However, due
to data based on different definitions and methodologies, statistics in the UN Disability
Database are not internationally comparable. Interestingly, recent evidence on disability
prevalence rates in the Global South are based on internationally comparable data that
use the Washington Group Short Set or the Child Functioning Module. These studies
tend to show higher prevalence rates than earlier estimates using a variety of measures as in
the UN Disability Statistics Database (e.g., Hanass-Hancock et al., 2023b, Mitra & Yap,
2021, UNICEF, 2021). In other words, disability statistics are currently improving, but
it is not clear yet whether and how humanitarian organizations are using these statistics.
70 C. FUNKE AND D. DIJKZEUL

The Washington Group has developed tools to measure disability in

line with the functional approach of the WHO’s International Classifica-
tion of Functioning, Disability, and Health.28 These tools avoid the term
“disability” and instead address only limitations in undertaking basic activ-
ities. Originally designed for population censuses and national household
surveys, development and humanitarian organizations increasingly use
them for their own data collection and analysis purposes.29 A number of
international organizations, including the United Nations Development
Programme, the International Labour Organization, UNICEF, WHO,
OHCHR, IDA, and IDDC officially endorse the Washington Group
Questions as the most suitable tool for producing disaggregated data on
disability (Leonard Cheshire and Handicap International, 2018, 7).30
The Washington Group Short Set on Functioning (WG-SS) covers six
core areas of activity: walking, seeing, hearing, cognition, self-care, and
communication. Each question has four response categories: (1) No, no
difficulty; (2) Yes, some difficulty; (3) Yes, a lot of difficulty; (4) Cannot
do it at all (Leonard Cheshire and Handicap International, 2018, 7;
Washington Group on Disability Statistics, 2021). When more detail is
required or where children are concerned, the Washington Group has
developed additional tools.31
Nevertheless, research on the use of the Washington Group Questions
by humanitarian and development actors revealed several pitfalls, which

28 The Washington Group on Disability Statistics was founded in 2001 to develop

standard indicators of disability in surveys and censuses by National Statistics Offices. It is
a UN city group established under the United Nations Statistical Commission (Washington
Group, 2020).
29 The Humanitarian Inclusion Standards, the Sphere Handbook, and the IASC
Guidelines advocate for the use of the Washington Group Short Set in humanitarian
action.
30 The production of disaggregated data on disability is usually not a straightforward
process. “Researchers need to apply cut-off points (or thresholds) when creating […]
disability measures and dividing the data in those who are identified as having a disability
and those who are not. The chosen cut-off(s) for the level of functional disability affects
estimates of disability prevalence and inequalities in wellbeing between persons with and
without disabilities (also referred [to] as disability gaps)” (Hanass-Hancock et al., 2023a,
2).
31 The Washington Group Short Set on Functioning – Enhanced; Extended Ques-
tion Set on Functioning; the Washington Group Child Functioning Module (Washington
Group on Disability Statistics 2021a). For more tools, see Annex 2 of the IASC Guidelines
(IASC, 2019b, 192).
 4 TRANSLATING DISABILITY INCLUSION … 71

should be well understood before requesting or collecting disaggregated

data on persons with disabilities in humanitarian crises (Leonard Cheshire
and Handicap International, 2018, 29). Most importantly, organizations
require guidance and training on how to use these questions. It is crucial
that they are not mistaken as a diagnostic tool for individual persons.
They should be used exactly as they are prescribed, with translations of
the questions verified by the Washington Group. Hence, they should not
be used as screening questions for individuals or in isolation from larger
surveys or questionnaires. To be effective, they also need to be built into
pre-existing data collection methods. In addition, organizations need to
possess the skills to analyze the data correctly. Apart from general data
literacy skills, a sound understanding of disability and inclusion is vital.
Otherwise, their connection to strengthening program design, implemen-
tation, and evaluation remains limited (Leonard Cheshire and Handicap
International, 2018). Perry (2023a, 25), for example, notices that the
WG-SS were not used appropriately in the 2023 South Sudan Humani-
tarian Needs Overview. Data was “collected using a modified Washington
Group methodology, where questions were asked at the household level
rather than to individuals, and [analyzed] on a ‘severity scale’ of 1–5
(none/minimal—stress—severe—extreme—catastrophic) using a wrong
interpretation of the Washington Group’s guidance” (Perry, 2023b,
25).32
As a first step to use disability data properly, the five criteria in
Table 4.3 can help humanitarians to assess when to use the WG-SS in
their programming. They address the purpose, feasibility, buy-in, quality,
and actionability of data disaggregated by disability.
In addition to the collection of quantitative data, humanitarian organi-
zations should facilitate comprehensive barriers and facilitator assessments
to understand the views and priorities of persons with disabilities, map the
capacities and resources of organizations in the humanitarian response,
and monitor the degree to which persons with disabilities have access to
assistance, services, and facilities (IASC, 2019a, 23). This usually requires
the use of qualitative research methods, such as focus group discussions,
key informant interviews, and (participant) observation (IASC, 2019a,
24). Clearly, this is a demanding task but without solid qualitative and

32 Perry (2023b, 25) also argues that data collection “when implemented poorly with
unusable data using an unhelpful analytic framework […] not only produces no result but
also hardens the resistance to collecting and using disability data” (ibid).
72 C. FUNKE AND D. DIJKZEUL

Table 4.3 Decision tool for the use of the Washington Group short set on
functioning in humanitarian programming (O’Reilly et al., 2023)

Will it work?
Criteria Questions to ask when considering implementing the WG-SS Yes/
No

Purpose Is there a clear and shared understanding of why these data [Yes]
should be collected, and how the resulting information can [No]
contribute to programmatic objectives?
Buy-In Are key staff involved in the collection, analysis, and use of [Yes]
data willing to implement the WG-SS? [No]
Feasibility Is disaggregation feasible in the available timeline and [Yes]
implementation context, using the available resources and [No]
modality of data collection?
Quality Is your data collection process capable of implementing [Yes]
quality checks and adapting as required? [No]
Analysis and Is there a plan in place to analyze and use the data to [Yes]
Action contribute to inclusive programming? [No]

quantitative data it is impossible to identify persons with disabilities,

establish their needs, remove barriers, and enable meaningful participa-
tion. Coordination cluster leads and humanitarian country teams, who
share responsibility for Humanitarian Needs Overviews and Humanitarian
Response Plans, should therefore encourage organizations to share their
data on disability with other humanitarians in preparing relevant coor-
dination forums and working groups and develop a (joint) strategy at
the international and national levels to close data gaps. At present, the
humanitarian sector tends to privilege quantitative over qualitative data
because the latter is often perceived as being more opaque, less efficient,
and less reliable than numbers (Glasman, 2020). Yet, the rapid growth
of numerical data does not sufficiently lead to more knowledge on actual
needs, attitudes, perceptions, and capacities of crisis-affected individuals,
including persons with disabilities.
 4 TRANSLATING DISABILITY INCLUSION … 73

4.3.4 Empowerment and Capacity Building33

To ensure the meaningful participation of persons with disabilities in
humanitarian action, including their representation in relevant coordi-
nation mechanisms, it is central for humanitarian actors, persons with
disabilities and their representative organizations to increase their aware-
ness about their rights and strengthen their knowledge of the human-
itarian system (Funke & Dijkzeul, 2021b, 79). The IASC Guidelines
therefore encourage humanitarian organizations to support persons with
disabilities in these efforts and to strengthen and extend their capacities,
for example, through training, collecting experiences and good practices,
and establishing help desks. Simultaneously, they recommend humani-
tarian organizations to sensitize their staff on the rights of persons with
disabilities at all levels throughout the humanitarian response, including
first responders, other staff, service providers, and contractors. This means
that capacity building is a two-way street that requires both persons with
disabilities and humanitarian workers to build their knowledge, skills, and
understanding of inclusive humanitarian action (IASC, 2019a, 20).
Usually, disability-focused NGOs, such as HI and CBM, organize
training courses, inclusion audits, and provide technical support to main-
stream organizations. Simultaneously, they closely work with persons with
disabilities and OPDs to build their capacities on the functioning of
the humanitarian system and respective coordination structures. In the
Rohingya refugee response in Bangladesh, for example, HI and CBM,
together with their local partner, the Centre for Disability in Devel-
opment, include capacity building into their UK- and Australia-funded
projects (Funke, 2020; Funke & Dijkzeul, 2021b).
Besides capacity building within a particular funded project or
response, new initiatives also emerged at the international level. The
Age and Disability Capacity Programme (ADCAP) consortium34 devel-
oped a training model, a handbook, toolkits, templates, and materials
on best practices (Hill et al., 2020, 20). Moreover, IDA and IDDC
created an intensive training program on the CRPD and the Sustainable

33 The IASC Guidelines mention “empowerment and capacity building” before “data
collection and monitoring”. Here we decided to change this order because “empowerment
and capacity building” is an essential part of and a prerequisite for the previous three
“must-do” actions.
34 ADCAP is an initiative of CBM, Disasterready.org, HI, HelpAge International, IFRC,
Oxford Brookes University, and RedR UK.
74 C. FUNKE AND D. DIJKZEUL

Development Goals, the so-called Bridge CRPD-SDG training initiative.

It aims to support OPDs and disability rights advocates to develop an
inclusive and comprehensive CRPD perspective on development (IDA,
2021). For example, in 2019, the initiative organized its first training
on Article 11 of the CRPD. The training brought together 38 leaders
from the disability rights movement and humanitarian organizations
to foster dialogue, cooperation, and exchange among them (Fleury &
Ujah, 2020, 13). Participants evaluated the pilot training as extremely
positive, and going forward, more trainings shall have an Article 11
focus.35 In 2023, the United Nations System Staff College (UNSSC)
also introduced a self-paced course “United Nations Disability Inclusion
Strategy – Putting Words into Action” (UNSSC, 2022). Developed by
the Disability Team of the Executive Office of the Secretary-General,
the learning module supports UN personnel at all levels to develop a
disability-inclusive mindset and take action to promote disability inclu-
sion in their day-to-day work (UNSSC, 2022). With funding from the
German Federal Foreign Office, the Disability Reference Group also
developed seven training modules to facilitate learning and discussions
on disability-inclusive humanitarian action (HI, n.d.).
Nevertheless, caution is needed when promoting capacity building.
Drawing on evidence from Nicaragua, Meyers (2014, 405) shows
that political empowerment, advocacy training, and efforts to formalize
reporting procedures did not resonate with local OPDs. For capacity
building measures to be effective and inclusive, they need to be sensi-
tive to the local context and priorities (Meyers, 2016, 7). Otherwise, they
create a top-down process by which OPDs merely echo global priori-
ties, risking that local OPDs distance themselves from their members and
ultimately “render them ineffective in their specific social and political
contexts” (Meyers, 2016, 7).
All in all, the humanitarian sector is making progress with trans-
lating the disability norm cluster. Yet, sector-wide policies, guidelines,
and standards need to be complemented by the actions of individual
organizations.

35 E-mail correspondence, CBM, 7 August 2019.

 4 TRANSLATING DISABILITY INCLUSION … 75

4.4 Translating the Inclusion Norm

Cluster Within Humanitarian Organizations
The publication of the IASC Guidelines and related normative frame-
works contributed to a heightened awareness on gaps in disability
inclusion. Large humanitarian organizations, such as the UN agencies,
the International Committee of the Red Cross and the International
Federation of the Red Cross and Red Crescent Societies, with compar-
atively stable funding sources, have more capacity to design inclusive
policies, develop a clear strategy, hire inclusion focal points and in doing
so, gradually mainstream disability across their organizations than their
smaller implementing partners (Funke & Dijkzeul, 2021a, 55). Many
smaller NGOs are struggling to put their commitments on inclusion
into policy and action (Funke & Dijkzeul, 2021a, 52). Strikingly, little
public information exists on how the largest humanitarian NGOs incor-
porate disability-inclusive approaches into their work. There is even less
information from the many smaller NGOs worldwide. The Norwegian
Refugee Council, for instance, admitted that it was still not systematically
addressing disability and many other diversity issues across all projects,
contexts, and phases of displacement (Atlas Alliance, 2020).
Other NGOs have made more progress. In 2018, Médecins Sans Fron-
tières (MSF) launched an international project on inclusion of persons
with disabilities and developed a guideline for MSF field staff to build
their capacity (Médecins Sans Frontierès, n.d.). One year later, the
International Rescue Committee (IRC) adopted a “Client Responsive
Programming Framework”, which demands feedback mechanisms to be
accessible for all (IRC, 2016). Moreover, country programs are obliged
to proactively engage vulnerable groups, including persons with disabil-
ities. Islamic Relief went even further and developed an Operational
Framework on Protection and Inclusion. Furthermore, it carried out an
internal review to assess progress toward disability-inclusive programming
(Alsheikh Ahmed, 2020, 34). Crucially, Islamic Relief also broadened
access to the IASC Guidelines by facilitating their translation into Arabic
(Islamic Relief, 2020, 50). So far, however, there are only few examples
of good practices from NGOs; having guidelines and a “Client Response
Framework” does not imply that these organizations successfully imple-
ment all of their commitments.
In fact, even despite its system-wide Disability Inclusion Strategy, the
United Nations also needs to improve its performance vis-à-vis persons
76 C. FUNKE AND D. DIJKZEUL

with disabilities. A 2020 progress report revealed that although the

launch of this Strategy has contributed to a change in mindset and
values among UN entities and many of them have now taken action
on disability inclusion, “improvement is needed for the majority of
entities to meet the performance indicators” (UN, 2020, 12). Particu-
larly, the UN organizations need to make greater strides in promoting
the meaningful participation of persons with disabilities. Although UN
entities are consulting with persons with disabilities and their represen-
tative organizations, “such consultations have not been undertaken in a
systematic, inclusive and accessible manner” (UN, 2020, 16). Further-
more, they need to step up efforts to remove attitudinal, environmental,
and institutional barriers. Only 21% of UN organizations have estab-
lished or implemented an accessibility policy, and only 18% ensure that
their procurement is accessible and disability-inclusive (UN, 2020, 17).
Improvement is essential because UN organizations usually play a lead-
role in humanitarian coordination at international and country levels. The
stronger the leads, the better the coordination clusters can operate.
In other areas, especially data collection, the UN System is more
advanced. More than half of the entities (56%) have either integrated
disability into their strategic plans—which include indicators that disag-
gregate data by disability and sex—or are approaching this requirement
(UN, 2020, 15). Regarding the building of organizational capacity, the
report reveals a mixed picture. While 47% of entities provide learning and
training opportunities on disability inclusion, only 4% indicate that the
completion of such training was mandatory for staff at all levels (UN,
2020, 21).
Yet, overall, there is a general trend toward changing common prac-
tices and entrenched structures so that persons with disabilities can
participate more at all levels and stages of the humanitarian response.
However, translation at the policy level, though incomplete, is stronger
than implementation at the field level (see Chapter 5).

4.5 Comparative Analysis of Norm Translation

into Policies and Norm Robustness
The former sections empirically described the various donor and human-
itarian policies. This section comparatively analyzes what these forms
of translation mean for norm robustness. Table 4.1 shows that despite
gradually growing initiatives, donor governments vary considerably in
 4 TRANSLATING DISABILITY INCLUSION … 77

their approaches to disability inclusion and must improve translation and

implementation further. Most approaches are too abstract and general
for quick implementation. Except for the United Kingdom, no donor
state has a concise up-to-date disability inclusion strategy for its human-
itarian assistance.36 This makes it difficult to measure progress against
donors’ self-defined objectives. These objectives, if any, are usually “hid-
den” in a number of different documents, such as white papers, national
strategies on disability, general strategies on humanitarian action, and
related documents. In concrete terms, this impedes monitoring of the
use of disability disaggregated data, implementation of the OECD-DAC
disability inclusion marker, overall ODA spending on disability inclusion,
donor engagement with OPDs, and human resources used for work on
disability. Evaluations on disability inclusion funded by these donors are
only infrequently available. Altogether, this leaves humanitarian stake-
holders, including persons with disabilities, with patchy and incomplete
information on inclusion. As a result, the cumulative impact of donor
approaches to inclusion is not high enough. What does this tell us about
norm translation and norm robustness?
As stated, norms may strengthen, gain more clarity, or lose rele-
vance (Wunderlich, 2013, 29). Undoubtedly, the adoption of the CRPD
strengthened the disability inclusion norm for humanitarian action. Its
Article 11 on the protection of persons with disabilities in emergencies
created for the first time non-derogable obligations (Motz, 2018, 314).
The adoption of the CRPD also led to important donor policy devel-
opments and the creation of non-binding tools and guidelines. They
underscore a rights-based approach to disability inclusion and provide
guidance for donors and other actors on how to implement these obli-
gations into humanitarian practice, for example, through the removal of
barriers, collection of disaggregated data, and empowerment and capacity
building. At first glance, they firmly institutionalize disability as a human
rights issue at the international level.
However, each resolution, policy document, and guidance on inclu-
sion also draws attention to the fact that the actual translation and
implementation of the disability inclusion norm are low since its claims

36 Although it is worth noting that some of these donors, like Finland, have strate-
gies specifically for development assistance. In addition, the 2021–2030 European Union
Disability Strategy emphasizes the European Union’s role and responsibilities within
humanitarian action in a dedicated section.
78 C. FUNKE AND D. DIJKZEUL

do not consistently guide the actions of its addressees. Although most

donors refer to persons with disabilities in their policies as an ‘at-risk
group’, they rarely make the inclusion of persons with disabilities a
priority in their humanitarian funding. In contrast, many donors do
seek to include women and children through their policies and funding
(e.g., European Commission, 2020; Government of Canada, 2020).
Regarding disability inclusion, though, many policy documents remain
astonishingly vague about the best ways to promote the principles
of participation, accountability, non-discrimination, and empowerment
(e.g., USAID, 2019; Ministry of Foreign Affairs (Japan) 2011). Only the
United Kingdom has a precise strategy with clear objectives and deliv-
erables to measure progress (Ruminowicz, 2022, 455; FCDO, 2020),
although recent budget cuts for humanitarian action will most likely slow
down its implementation. The numbers of ODA also speak for them-
selves: Despite donor commitments and policy initiatives, overall funding
targeted for the purpose of inclusion remains low. Walton found that
between 2014 and 2018 “even the five most disability-inclusion focused
donors targeted just 3% of their aid to this purpose” (Walton, 2020, 1).
Between 2014 and 2018, “projects targeting disability inclusion totaled
merely $ 3.2 billion, which represents less than 0.5% of all international
aid” (Walton, 2020, 1). Australia—once a leading voice on disability
inclusion at the global stage—has significantly weakened its role as a norm
entrepreneur by delaying the process of developing a new stand-alone
strategy on disability inclusion and through significant cuts in its core
disability budget. Hence, the translation of the disability inclusion norm
cluster is poor or has been weakened.
Nevertheless, the absence of a detailed disability inclusion strategy
does not imply that the donors are indifferent to their legal obliga-
tions under the CRPD. Otherwise, the growth in institutionalization at
the international level would not have been possible (see UN Women,
2022). As mentioned, Germany lists disability as a cross-cutting topic
and requests information from humanitarian organizations on how they
consider persons with disabilities in their projects, and it integrates
disability into sector-specific strategies. Most other donors, for example
Sweden, committed themselves to adopting the OECD-DAC Disability
Inclusion Marker, which allows partner organizations to flag whether
their ODA spending is disability-inclusive (UN Women, 2022, 4). Similar
commitments are reflected in the European Strategy for the Rights of
Persons with Disabilities 2021–2030.
 4 TRANSLATING DISABILITY INCLUSION … 79

These examples show that many donors are aware of their central role
in promoting the inclusion of persons with disabilities in humanitarian
action and are changing their policies, albeit slowly. Some donors, notably
the United Kingdom and now also the European Union and Finland,
work toward a holistic approach that goes beyond disability inclusion in
humanitarian programs. They promote the creation of an accessible and
inclusive work environment, and strengthen the internal skills, knowl-
edge, and expertise of their own staff (FCDO, 2020, 23; ECHO, 2019).
One of the flagship initiatives of the EU Strategy for the Rights of Persons
with Disabilities 2021–2030, for example, is the Disability Platform. It
comprises experts from all EU member states, 14 civil society organiza-
tions, and the European institutions to enhance cooperation between the
institutions of the EU member states, the Commission, and civil society
on issues relating to disability.
Moreover, some humanitarian donors use their membership in interna-
tional forums to advocate for disability inclusion. Australia, for example,
made disability inclusion a focus in its 2018–2020 term on the UN
Human Rights Council, which culminated in the resolution on disability
and climate change (Department of Foreign Affairs and Trade, n.d.).
Similarly, the European Union intends to “share its strategies and prac-
tices on the implementation of the UNCRPD in UN multilateral fora,
such as the Human Rights Council, the Commission on the Status
of Women, or the Commission of37 Social Development” (European
Commission, 2021, 24). Furthermore, all representations of the Euro-
pean Union around the world, including those in countries affected by
crises, now have their own focal points on development and disability
(UN General Assembly A/HRC/52/32/Add.1, 2022, 11). In short,
donors have begun to use their power of the purse and policies to
promote the use of disability inclusion markers in their funding proposals,
as well as age, gender, and disability disaggregated data. Yet, in 2018,
only 9% of OECD-DAC—marked disability aid “used disability-inclusive
keywords in project titles and descriptions” (Walton, 2020, 7). Further-
more, evaluations of projects that promote inclusion and empowerment
of persons with disabilities are rare so that the evidence base on progress
toward more inclusive humanitarian action remains much too small
(Walton, 2020, 7). Indeed, there is rarely any evidence that donors

37 The European Commission quotes “of” even though it is the Commission for Social
Development.
80 C. FUNKE AND D. DIJKZEUL

provide funding directly to OPDs (Walton, 2020, 13). A GLAD Network

study on meaningful engagement of OPDs in Bangladesh, Kenya, and
Nepal found that donors prefer to fund INGOs, which give their funding
to national umbrella OPDs or federations. National and local OPDs then
receive their funding from those umbrella OPDs or federations. As a
result, the roles of local OPDs remain most often confined to project
implementation, and to a large extent, only event organization (GLAD
Network, 2022, 4). Field research in Cox’s Bazar and South Sudan shows
that this is still the case because donors either do not know the OPDs
well enough or delegate capacity building of OPDs to INGOs and UN
organizations (see below).
All in all, the inclusion of persons with disabilities in humanitarian poli-
cies is still at a nascent stage. More than 8 years after the launch of the
Humanitarian Disability Charter, and 17 years after the entry into force
of the CRPD most donors are still in the process of translating their
commitments into a concrete agenda. Although the global estimate is
that 16% of the population has a disability, funding rarely succeeds 3% of
donor funding. In addition, not having a detailed strategy impedes the
translation and implementation of norms. A lack of a detailed strategy
on disability is thus a fairly clear example of States Parties not recog-
nizing their legal obligations under the CRPD. As long as donors do not
indicate precisely how they promote disability inclusion and allocate suffi-
cient funding, we cannot speak of a robust disability inclusion norm at
the international and domestic levels.
Unsurprisingly, there are leaders and laggards in norm translation.
While the United Kingdom has a detailed delivery plan, Japan as the
ninth largest humanitarian donor, does not specify any systematic efforts
in promoting the inclusion of persons with disabilities in its assistance
(Ministry of Foreign Affairs of Japan, 2011). Remarkably, this also applies
to states, such as Switzerland, which are strong proponents of rights-
based approaches in international cooperation but whose humanitarian
strategies lack an articulated focus on disability inclusion.
Moreover, the donors’ language does not consistently reflect a rights-
based approach to inclusion. Some of them still frame persons with
disabilities as “particularly vulnerable” who “do not have the same capac-
ities to access water, food or medical care” (Schweizerische Eidgenossen-
schaft, 2020). Policy Letters of the Netherlands and Norway’s Human-
itarian Strategy also refer to persons with disabilities as just a vulnerable
 4 TRANSLATING DISABILITY INCLUSION … 81

group. In 2022, the Committee on the Rights of Persons with Disabil-

ities, for example, criticized Japan for the perpetuation of the medical
model of disability across legislation, regulation, and practice and use of
derogatory terminology, as well as inaccurate translation of the CRPD
into Japanese, particularly of crucial terms, such as “inclusion” (CRPD/
C/JPNCO/1 9 September 2022, p. 2). Yet, the Committee did not
comment on Japan’s humanitarian assistance abroad and only examined
its approach to natural disasters when discussing Article 11 obliga-
tions. With respect to development cooperation (CRPD Article 32),
the Committee notes that the mainstreaming of disability is not fully
applied (ibid., p. 17). Such examples show that, despite the CRPD, the
Humanitarian Charter, and the IASC Guidelines, the old perception
of ‘vulnerability and dependence’—instead of persons with disabilities as
active agents—has not been fully overcome.
Fostering an understanding of persons with disabilities as passive recip-
ients of aid bears the risk of supporting measures, which are limited to
assistance-based activities rather than those that enhance their capaci-
ties, participation, and empowerment (e.g., GFFO, 2019). As indicated,
the German Humanitarian Strategy underlines that affected populations
should be treated as active agents rather than passive recipients of assis-
tance (GFFO, 2019, 10). It would be useful if the OECD-DAC evaluated
the actual progress in translation and implementation of its member
states, so that the lack of consistent implementation and evaluations can
be addressed.
Donor policies set the stage for the interorganizational and organiza-
tional translation of the disability inclusion norm cluster. With the IASC
Guidelines, much work on disability inclusion has been accomplished at
the interorganizational level, particularly with the four “must-do” actions.
However, there is still more to be done. The translation into guide-
lines and standards does not mean that individual organizations have
the expertise or resources to implement the disability norm cluster. For
example, collecting better gender, age, and disability disaggregated data
only matters, when it successfully informs programs, projects, and advo-
cacy. Just as with the policies at the donor level, sufficient funding, clear
objectives, disability markers, deliverables, timelines, regular evaluations,
knowledge sharing of good practices and lessons learned, and supporting
research to enhance the evidence base are all necessary at the level of the
individual organization.
82 C. FUNKE AND D. DIJKZEUL

With the shift from norm institutionalization to translation the number

of actors increases rapidly. This chapter has studied norm translation in
three steps. It first looked at donor policies, then at the interorganiza-
tional level, and finally at individual organizations. The least information
is available on the individual organizations. Humanitarian organizations
differ widely in their attention to disability inclusion, and they do not
have a standardized way of reporting and providing other information on
disability inclusion. As a result, it is very challenging to judge the quality
of their inclusion work. In general, all actors should provide more specific
information on disability inclusion. Yet, it is clear that norm robustness is
more limited during translation than during institutionalization. The next
chapter will study norm implementation in Cox’s Bazar, Bangladesh and
South Sudan.

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 CHAPTER 5

Implementing Disability Inclusion:

Comparing Bangladesh and South Sudan

Abstract This chapter comparatively examines the implementation of

disability inclusion in two humanitarian crises, Cox’s Bazar, Bangladesh
and South Sudan. These divergent cases illustrate in different ways
the challenges and opportunities for implementing disability inclusion
in complex and protracted emergencies. It shows that many organi-
zations know about the CRPD and recognize the need to become
disability-inclusive. However, most struggle with the implementation of
the disability inclusion norm cluster. This chapter elucidates the reasons
for incomplete implementation and limited impact of disability inclusion.

Keywords Norm implementation · Protracted emergencies ·

Humanitarian crises · Limited impact · Bangladesh · South Sudan

5.1 Introduction
The previous chapters have shown that the types of actors involved
in translation of a norm cluster is broader than in institutionalization.
With implementation at the country level, the number and types of
actors multiplies further, as local, national, and international actors come
together. We selected humanitarian crises in Bangladesh and South Sudan

© The Author(s) 2025 95

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_5
96 C. FUNKE AND D. DIJKZEUL

as case studies, because together they show a wide variety of norm devel-
opment issues (see Sect. 2.6). The first is a humanitarian crisis in a
comparatively small area, Cox’s Bazar, which is home to the world’s
largest compound of refugee camps. The other is located amidst a nation-
wide civil war, with several armed factions, malnutrition, frequently
bordering on famine, leading to forced migration: internally displaced
persons in South Sudan and refugees in neighboring countries. These
divergent cases illustrate in different ways the challenges and opportu-
nities in implementing disability inclusion in complex and protracted
emergencies. In Cox’s Bazar, eight UN agencies work with 134 opera-
tional partners, including both national and international NGOs (ISCG,
2020, 2021). In South Sudan, ten UN agencies have a representation and
work with 173 partners (107 national NGOs and 66 international NGOs)
(OCHA, 2022, 25). Our research shows that many organizations know
about the CRPD and recognize the need to become disability-inclusive.
However, many organizations struggle to implement the “must-do”
actions. To understand the slow implementation of the disability inclusion
norm cluster, a closer look at their practices is necessary.

5.2 The Rohingya Refugee Crisis

The Rohingya refugee crisis is the main humanitarian challenge in the
Asia–Pacific region (Mixed Migration Centre, 2019, 46). Following mass
atrocities in the state of Rakhine in Myanmar in August 2017, an esti-
mated 745,000 Rohingya fled to the Cox’s Bazar district in Bangladesh
(OCHA, n.d.). They now reside in 34 extremely congested camps,
located in the two upazilas (administrative areas) of Teknaf and Ukhiya
(ISCG, 2020, 13). The situation in the camps is precarious and the
vast majority of the refugees remains entirely dependent on humanitarian
action (UNHCR and REACH Initiative, 2019, 5). The Rohingya influx
has also put an enormous burden on the host communities that now
compete for scarce resources with the refugees (ISCG, 2020, 29–31).
Officially, Bangladesh attaches great importance to the inclusion of
persons with disabilities. It was one of the first countries to sign the CRPD
and its Optional Protocol, and in 2013, it passed a national policy—
the Rights and Protection of Persons with Disabilities Act . In principle, it
thus approaches disability from a human rights perspective and promotes
inclusive education, accessibility in all public places, equal opportunities
in employment, and the protection of inherited property rights. Various
 5 IMPLEMENTING DISABILITY INCLUSION: COMPARING … 97

accountability mechanisms at different administrative levels oversee the

implementation of the act and strive to protect the rights of persons with
disabilities. However, persons with disabilities still face many barriers that
prevent them from fully enjoying their human rights. The availability of
data is poor due to the lack of officially published national statistics on
persons with disabilities, and only a few comprehensive needs assessments
of the Bangladeshi population have been carried out by humanitarian
actors.1 Moreover, while employees of local government institutions are
working to become more inclusive, they often lack awareness and knowl-
edge about the rights of persons with disabilities and international and
national protection standards.2 As in many developing economies, roads
and infrastructure in Cox’s Bazar and many other regions in Bangladesh
are in poor condition and public buildings and local transport are not
accessible for persons with limited mobility because the authorities lack
the financial means to remodel the infrastructure (Funke & Dijkzeul,
2021b, 41). In host communities, persons with disabilities also face
discrimination and many people still perceive them as “passive victims”,
who lack any sense of agency (Funke & Dijkzeul, 2021b, 41).
For refugees with disabilities, the situation is even more dire than
for those in the host communities (Funke & Dijkzeul, 2021b, 35). The
Government of Bangladesh officially considers the crisis as a short-term
challenge and, as stated, refers to the Rohingya as “forcibly displaced
Myanmar nationals”, rather than refugees (Funke & Dijkzeul, 2021b,
35). It therefore does not follow international refugee law. This failure
to apply international refugee law norms means that the Government of
Bangladesh prevents the Rohingyas from forming themselves into orga-
nizations, restricts the freedom of movement through the construction
of fencing around the hilly Rohingya camps, and has forcibly displaced
thousands of Rohingyas to Bashan Char, a low-lying island in the Gulf
of Bengal that is prone to flooding. Further, by not applying interna-
tional refugee law the Government of Bangladesh can officially prevent

1 A Household Income and Expenditure Survey (HIES) from 2010 found that 9% of
all citizens have a disability, while a World Bank case study on disabilities in Bangladesh
estimated that 16.2% of all working-age people in Bangladesh had some kind of disability
(Swedish International Development Cooperation Agency, 2014, 1). In the 2016 HIES
estimate, the number was lower at 6.94% (Ministry of Planning, Statistics and Informatics
Division and Bangladesh Bureau of Statistics, 2016).
2 Several international organizations and scholars also raise the issue of corruption
(bdnews24.com, 2019; Risk and Compliance Portal, 2020).
98 C. FUNKE AND D. DIJKZEUL

the Rohingyas from working. In this context, human rights advocates

and numerous international NGOs have raised strong concerns in a joint
statement about the obstacles that Rohingya refugees experience in exer-
cising their fundamental rights and freedoms, including their rights to
education, livelihoods, and full integration into the host communities.3
These restrictions only compounded the existing challenges and risks for
Rohingya refugees with disabilities who face additional discrimination,
stigma, and exclusion placing them in further vulnerable and dangerous
situations.
In the camps, persons with disabilities face numerous barriers that
prevent them from accessing crucial services and meaningfully claiming
their rights. Most evident are the environmental barriers that hinder them
from accessing registration and distribution points, and WASH facili-
ties, including latrines, bathing units, and spaces for menstrual hygiene
management, as well as various service facilities and so-called safe spaces
for children and women (Funke & Dijkzeul, 2021b, 35). These facil-
ities are either located far away, uphill, across difficult terrain, or are
constructed in such a way that they are difficult to access or operate
for persons with disabilities (Funke & Dijkzeul, 2021b, 35). Buildings
and shelters tend to have steps and narrow entrances, and latrine blocks
are too narrow to accommodate a support person and persons using a
wheelchair or mobility aids. During monsoon and cyclone seasons, service
facilities are even harder to access because roads and bridges are flooded or
become very slippery (Funke & Dijkzeul, 2021b, 36). Regrettably, these
barriers are extremely difficult to reduce once they have been established.
The overcrowding of the camps limits the available space for an expan-
sion or remodeling of existing facilities. Moreover, discrimination and
negative attitudes toward persons with disabilities within the communities
mean that persons with disabilities rarely leave their makeshift shelters and
then become “invisible” in the camps. If they do leave their shelter and
have a visible impairment, they face increased stigma (Funke & Dijkzeul,
2021b).
In short, the Government of Bangladesh may officially respect the
disability inclusion norm in its domestic policies, but it does not respect

3 Twenty-seven organizations signed the statement, including CARE, Danish Refugee

Council, HI, Norwegian Refugee Council, and World Vision (see Human Rights Watch,
2019; Amnesty International 2020; InterAction, International Council of Voluntary
Agencies, 2020).
 5 IMPLEMENTING DISABILITY INCLUSION: COMPARING … 99

the norms of international refugee law.4 As a result, the disability

inclusion norm cluster is barely being implemented, and humanitarian
organizations struggle to uphold international refugee law, the CRPD,
and the IASC Guidelines, despite great needs. Meaningful participation,
the removal of barriers, empowerment, and the collection of reliable
data are limited. In Cox’s Bazar, humanitarian actors require consider-
able resources to address past failures in the planning and construction
of the camps’ infrastructure. To make services accessible for everyone,
roads, facilities, and shelters must be remodeled. Yet short funding cycles,
frequent staff turnover, and administrative procedures required by the
national authorities that entail a high workload for humanitarian staff
(e.g., for obtaining visa, accreditation, and working permits) reduce the
time and resources available to create an inclusive environment and ensure
the meaningful participation of persons with disabilities. These issues
also take away time that could be spent on building the capacity of
humanitarian staff.
Finally, many humanitarian organizations in Bangladesh have only just
started to build their capacity and thus lack expertise on how to ensure
the inclusion of persons with disabilities in their programs. Despite a
growing level of commitment from the humanitarian actors, as evidenced
through their signing of the Humanitarian Disability Charter, a system-
atic approach to ensuring the inclusion of persons with disabilities in their
organizations, programs, and services is still lacking. In fact, the inclusion
of persons with disabilities most often depends on the initiatives of a few
individuals within the organizations. Moreover, there are still insufficient
donor resources allocated to inclusive humanitarian action.

5.3 The South Sudanese Civil War

In South Sudan, persons with disabilities face similar barriers in their daily
lives. Here, it is not so much that the government explicitly does not
want to respect International Law concerning forced displacement, but

4 Legal experts will make the case that the Bangladeshi government is still bound by the
obligations of Article 11 as well as the CRPD generally. With essential control over the
Rohingyas in its territory, experts argue, it does not matter that the government does not
apply refugee law. It still has CRPD obligations to the persons with disabilities in its terri-
tory. The fact that the Government of Bangladesh neither respects the obligations from
the CRPD nor refugee law for the Rohingyas also illustrates that norm institutionalization
can differ considerably from norm translation and implementation.
100 C. FUNKE AND D. DIJKZEUL

more a case of overall state failure, corruption, and violence (Funke &
Dijkzeul, 2021a, 63). A civil war has been raging since 2013 and the
weak government barely provides social services.
Unlike Bangladesh, South Sudan has only recently signed and ratified
the CRPD. However, South Sudan was already officially bound to grant
its citizens the same rights and entitlements as Sudan, which has ratified
the CRPD and its Optional Protocol in 2009, 2 years before indepen-
dence (OHCHR, 2018). The fighting and the deliberate obstruction of
the reconstitution of the parliament by the ruling party—in contradiction
to the 2018 peace deal—stalled legislative processes for a long time (Voice
of America, 2021). In the end, South Sudanese civil society, including the
national disability movement, used the signing of the CRPD in February
2023 to advocate for disability rights. It then successfully advocated for
ratification.
The Transitional Constitution of the Republic of South Sudan of
2011 has several articles relevant for persons with disabilities. Article 6,
for example, promotes the development of a sign language. Neverthe-
less, the Transitional Constitution takes a welfare approach to disability
and only indirectly refers to persons with disabilities as part of a larger
group of “persons with special needs” (Government of Southern Sudan,
2011). It officially grants this group full participation in society and enjoy-
ment of rights and freedoms as well as “the right to the respect of their
dignity” (Article 30). Yet, the Transitional Constitution fails to define
who precisely belongs to the group of “persons with special needs”.
Interestingly, South Sudan’s policies relevant for the protection of the
human rights of persons with disabilities are more advanced than its
legislation. In 2014, the Ministry of Education, Science and Technology
with support from the international inclusion-focused NGO Light for the
World issued a policy position paper on a National Inclusive Education
Policy (South Sudan, Ministry of Education, Science and Technology,
2014). The position paper provides a vision for inclusive education and
seeks to ensure that all children are given the opportunity to reach their
potential. The Ministry adopted the policy in 2021.
Six years earlier, the Ministry of Gender, Child Welfare, Humani-
tarian Affairs and Disaster Management had already passed a National
Disability and Inclusion Policy, hence meeting one of the objectives of the
2011 South Sudan Development Plan (South Sudan, Ministry of Gender,
Child, Social Welfare, Humanitarian Affairs and Disaster Management,
 5 IMPLEMENTING DISABILITY INCLUSION: COMPARING … 101

2013). Unlike the Transitional Constitution, the Disability and Inclu-

sion Policy reflects a human rights-based understanding of disability and
pursues a two-fold goal: (1) address and respond to the vulnerabilities
of persons with disabilities; and (2) promote and protect their rights and
dignity in an inclusive manner. Yet, as in many developing countries with
weak state structures, implementation of these policies lags and persons
with disabilities continue to face attitudinal, environmental, and institu-
tional barriers that prevent them from fully participating in society and
meeting their needs (Funke & Dijkzeul, 2021a, 25).
Generally, but also specifically in the context of the civil war, persons
with physical impairments have difficulties using services and participating
in livelihood opportunities because they have barely any access to assistive
devices that would enable them to reach service points and meaning-
fully engage in community life. Some of them make their own devices
from the material they can buy on the market or find on the streets, but
these cannot replace professional support equipment, such as crutches,
wheelchairs, and hearing aids (Focus group discussions Yambio and Yei,
May/June 2021).
Moreover, persons with disabilities encounter discrimination in the
job market and lack job opportunities either because they are often
prevented from pursuing an education that would give them the neces-
sary skills and qualifications to compete with other potential employees or
because employers regard them as “incomplete” or incapable of working
(Funke & Dijkzeul, 2021a, 22). Only a very small number of them find
employment in OPDs or inclusion-focused organizations. Some persons
with disabilities do volunteer work, but hardly ever can they engage in
any income-generating activities that would help them to sustain their
families or contribute to their household income. Consequently, they also
have more difficulties in securing loans or support from financial institu-
tions and legal services (Focus group discussions Yambio and Yei, May/
June 2021).
In addition, inaccessible buildings and the lack of public transport
possibilities and a poor road network prevent many persons with a phys-
ical impairment to reach service points or health and education facilities,
which are often located far from the community (Focus group discus-
sions Yambio and Yei, May/June 2021). Frequent flooding in the rainy
seasons also hampers access. Moreover, persons with a visual impair-
ment usually do not receive the necessary assistance to locate services
and service points. Where they can access these facilities, they may
102 C. FUNKE AND D. DIJKZEUL

encounter negative attitudes by the service providers, discrimination, and

even harassment (Handicap International, 2017, 4). Barriers and facili-
tator assessments in the health sector found that attitudes among health
personnel varied according to the type of disability; persons with phys-
ical impairments faced less discrimination than persons with hearing or
intellectual impairments (Handicap International 2017, 4).
In South Sudan, humanitarian organizations now invest in capacity
building and awareness raising during the response. Thanks to these
efforts, the first tangible progress is becoming visible. Humanitarian
actors increasingly incorporate the Washington Group Short Set on
Functioning into their monitoring and evaluation tools, recruit persons
with disabilities, support the establishment OPDs, and make distribu-
tion points and service facilities more accessible. However, South Sudan
is a large country with little infrastructure and many remote areas are
not reached, especially during the rainy season. Serious gaps and chal-
lenges to disability inclusion remain. Most humanitarian organizations
still fail to recognize the diversity of disability and lack strategies to
include persons with intellectual and psychosocial impairments (Funke,
2022, 389). Moreover, persons with disabilities rarely participate in the
project design phase and seldom contribute to program development.
Furthermore, there is no nation-wide approach for the collection, analysis,
and use of disability disaggregated data, resulting in important infor-
mation gaps on ongoing needs and barriers to inclusion in the needs
assessments. In addition, communication barriers and lack of reasonable
accommodation in consultation meetings hinder the effective participa-
tion of persons with hearing, visual, and other types of disabilities and
make them dependent on family members and other caregivers (Funke,
2022, 390–391).
Although humanitarian actors currently face somewhat better condi-
tions to implement the four “must-do” actions in South Sudan than
in Bangladesh, prejudices and lack of expertise in disability inclusion in
the humanitarian community, as well as government neglect, are hard to
address in the short term.
 5 IMPLEMENTING DISABILITY INCLUSION: COMPARING … 103

5.4 Comparative Analysis of the Slow

Implementation of Norms on the Ground
The cases of Cox’s Bazar, Bangladesh and South Sudan illustrate the
challenges of slow implementation, and hence limited compliance with
the disability inclusion norm cluster. It is revealing that in these two
very dissimilar cases, the challenges persons with disabilities face are very
similar. The barriers and risks they encounter are comparable, regardless
of either government structure or whether the government is dealing
with a refugee situation in a specific region or a nation-wide civil
war. Progress in policy development to strengthen the disability inclu-
sion norm cluster at the international, national, and interorganizational
(strategic) levels does not have a tangible effect on the “norm targets”,
and hence, the protection and inclusion of persons with disabilities “on
the ground” (Funke & Dijkzeul, 2021b, 4). Put differently, improve-
ments in institutionalization and translation do not necessarily lead to
improved implementation. Four main reasons account for the slow imple-
mentation of the disability inclusion norm cluster: (1) norm evasion
by the central authorities; (2) lack of skills, confidence, and capacity of
the humanitarian organizations involved; (3) donor requirements and
conditionalities; and (4) the difficult operational environments.
In Bangladesh, the government has ratified the CRPD and the
Optional Protocol but does not adhere to its legal obligations toward the
Rohingyas. As mentioned, it rejects explicitly its obligations under inter-
national refugee law and implicitly the CRPD; it does not grant refugees
with disabilities the same rights and entitlements as its own citizens. In
concrete terms, this means that Rohingyas are not allowed to organize
themselves and form OPDs, engage in employment and livelihood activi-
ties, and receive formal education. Thus, in the context of Bangladesh, the
two legal regimes, the CRPD and the 1951 Refugee Convention, which
are supposed to complement each other, are not applied well enough.
This hinders humanitarian organizations from creating a more favorable
and inclusive environment for persons with disabilities in the refugee
camps.
In South Sudan, progress in the protection and inclusion of persons
with disabilities has been extremely limited because the government was,
as indicated above, very slow with signing and ratifying the CRPD, and
it still has not signed the Optional Protocol. Simultaneously, the imple-
mentation of its Inclusion Policy and Inclusive Education Policies and
104 C. FUNKE AND D. DIJKZEUL

other relevant commitments toward persons with disabilities are lagging

due to the civil war, internal power struggles in the ruling coalition, and
the failure to implement the Peace Accords (Funke, 2022, 395). While
the government does not oppose the disability inclusion norm cluster, it
does not prioritize its implementation in practice either. Thus, we cannot
speak of norm rejection but rather of norm evasion, which necessitates
humanitarian organizations to step in and do their best to protect and
assist persons with disabilities.
Both cases show that humanitarian organizations have or are in the
process of developing policies, strategies, or guidelines to make their
services inclusive and accessible even in situations of norm evasion.
However, their employees often lack the skills, confidence, and capacity
to implement the four “must-do” actions of the disability inclusion norm
cluster. As mentioned, they often do not know how to overcome commu-
nication barriers, meaningfully integrate the Washington Group Short Set
on Functioning into their surveys, remodel their service points and util-
ities, and involve persons with disabilities and OPDs in their operations.
Compounding the problem is that donors traditionally do not have dedi-
cated funding for capacity building because they often see it as part of
development work rather than humanitarian action (Funke & Dijkzeul,
2021b).
Overall, the case studies illustrate that neither the authorities nor
humanitarians and donors reject the disability inclusion norm cluster. Yet,
patchy and slow implementation challenges the norm cluster’s robust-
ness. Whereas donors and humanitarian organizations have begun to
invest into capacity building to enhance skills and confidence in inclusive
humanitarian action, national authorities still need to create a favorable
environment for inclusion, where complementing legal regimes are not
played out against each other, persons with disabilities can organize them-
selves, and all actors are held accountable for norm violations, evasion,
and non-compliance.

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 CHAPTER 6

Analysis Across Actors and Levels

Abstract This chapter analyzes the key findings using the theoretical
framework we developed in Chapter 2. Importantly, we highlight impor-
tant differences among the levels of global governance and show the
shortcomings of norm robustness as a concept for the study of norm
translation and implementation. The robustness of a norm cluster cannot
be explained well by contestation, deliberate norm violation, or intended
non-compliance. Rather, other policy priorities and lack of capacities
account for the lack of implementation and the relatively low impact of
inclusion in the lives of persons with disabilities. We call this norm evasion.
The multi-level approach implies a sea change in the study of Interna-
tional Law and IR, which need to leave their traditional confines behind.
They should extend their reach and use more multi-method research to
study all governance levels, as well as the interaction among them. In
the final section, we also provide recommendations on how to address
diversity in humanitarian action.

Keywords Global governance · Levels of analysis · Norm robustness ·

International relations · International Law

© The Author(s) 2025 109

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_6
110 C. FUNKE AND D. DIJKZEUL

6.1 Introduction
The complex nature of international norms implies that institutionaliza-
tion, translation, and implementation move at different speeds in which
some elements of a cluster receive more attention than others (Funke,
2022a, 223). Yet, a narrow focus on states neglects the impact of norms
on other addressees, such as international organizations and, of course,
persons with disabilities themselves and their OPDs. After an analysis of
the main mechanisms of norm development across actors and levels, this
chapter presents courses of action to strengthen the disability inclusion
norm cluster’s robustness.

6.2 Variation in Institutionalization,

Translation, and Implementation
At the international level, the CRPD has over time institutionalized an
understanding of disability as a human rights issue. It resulted in the trans-
lation of its core principles into soft law to which non-state actors could
also subscribe. The soft-law instruments also offered the possibility for
donor states, in particular the United States, to accept disability inclusion
at the international level, yet without acceding to the CRPD. Paradoxi-
cally, the soft norm-setting efforts for humanitarian action only followed
once the hard law—the CRPD with its distinct Article 11—had already
been established, and not the other way around.
A few donors, in particular Finland and the European Union, now
play a crucial role as so-called “norm entrepreneurs” to further promote
the consistent inclusion of persons with disabilities into policy and prac-
tice through three discrete means: (1) financial and other incentives, (2)
persuasion, and (3) socialization (Finnemore & Hollis, 2016, 449). The
large and increasing number of ratifications of the CRPD as well as the
numerous signatories of the Humanitarian Disability Charter also indi-
cate a growing acceptance of disability inclusion as a human rights issue
at the international level.
Yet, the precise impact of donor policies and the way they promote
the inclusion of persons with disabilities at other levels of global gover-
nance is often hard to determine, especially because most policies remain
abstract and do not contain specific operational requirements. More-
over, donors rely on translation and implementation by their partners,
UN organizations and NGOs. Countries like the United Kingdom and
 6 ANALYSIS ACROSS ACTORS AND LEVELS 111

Australia with their detailed and transparent strategies, including concise

timelines, markers, requirements, and deliverables, have lost influence as
norm entrepreneurs due to significant budget cuts and—in the case of
Australia—absence of a follow-up strategy. Without sustainable funding
and a strategic vision, implementation of inclusive humanitarian action
will become harder for their partners. Consequently, we indeed must
think of “norm robustness” in broader terms than the state-based ratifica-
tion, accession, or formal commitment to a norm and explore how norms
shape and are shaped by practices and interactions at various levels of
governance, in particular their implementation on the “ground” (Betts &
Orchard, 2014, 1).
Looking at disability inclusion in humanitarian action, such as broader
approach also requires further specification of the various levels of gover-
nance. Current studies commonly refer to two or three levels of norm
development (see Table 2.1). This book shows that it is more precise to
further disaggregate these levels in an actor-focused manner. This helps,
for example, to distinguish between donor governments and recipient
governments at the national level, and not just between governments and
implementing organizations (Table 6.1).
Concerning translation at the national donor government level,1 eval-
uations that measure the effects of donor requirements, for example,
regarding the collection and use of gender, age, and disability disag-
gregated data, would particularly provide a better understanding of the
norm cluster’s robustness. At present, however, such evaluations are
missing. Even without such information, it is obvious that humanitarian
organizations depend on reliable and flexible funding to mainstream
disability into their humanitarian operations (Funke & Dijkzeul, 2021,
15). Donor policies without sufficient and sustainable funding, clear
timelines, requirements, markers, and deliverables for disability inclusion
bear the risk to further delay the protection and assistance of persons
with disabilities on the ground. To strengthen the robustness of the
disability inclusion norm cluster, more donors must start translating their
commitments into concrete and coherent strategies, tools, and funding
requirements. In general, donors and other actors are still struggling with
human diversity with regard to translation and implementation. Norm
theory needs to pay closer attention to this.

1 Including the European Union, which is not a national donor government but a
major humanitarian donor and party to the CRPD.
112 C. FUNKE AND D. DIJKZEUL

Table 6.1 Closer specification of levels, mechanisms, actors, and outcomes

Levels of global Main mechanism of Main actors/Norm Desired outcomes

governance norm development addressees

International Level Institutionalization States in Conventions,

intergovernmental resolutions,
organizations (e.g., international
UN System) and standards,
coordination bodies guidelines; treaty
ratification /
accession
National Level Translation into Government Domestic law and/
Donor Government international donor bureaucracy, or thematic policies,
policy humanitarian humanitarian donor
organizations, and strategy/policy,
broader civil society funding policies/
decisions
National Level Translation into National Domestic law,
Recipient domestic policy and government, accreditation,
Government law sub-national humanitarian
authorities strategy/policy
Interorganizational Translation into Strategic Organizational
(Strategic) Level organizational management of policy and capacity
strategy and policies humanitarian building
organizations
Local Level Implementation Humanitarian Access to assistance
organizations at and protection for
country / field level, people of concern/
target groups and target groups
other actors in the
humanitarian arena

For translation at the organizational level, humanitarian organizations,

in turn, need to enhance organizational learning and adapt their work
procedures to ensure that their services are accessible to persons with
disabilities. Since the publication of the IASC Guidelines, we observe a
nascent effort toward more systematic translation of the disability inclu-
sion norm cluster across the humanitarian system. But public information
is lacking. At the moment, the United Nations with its elaborate Disability
Inclusion Strategy and mandatory reporting mechanism for every UN
entity is making the most visible progress with respect to all four “must-
do” actions. This is remarkable since the IASC Guidelines and the UN
Disability Inclusion Strategy have only been launched in 2019, although
the process to a more disability-inclusive humanitarian system already
 6 ANALYSIS ACROSS ACTORS AND LEVELS 113

started a few years earlier when the 2016 World Humanitarian Summit
initiated rapid soft-law development on disability inclusion in human-
itarian action. The UK Foreign Commonwealth Development Office’s
(then still called DFID) funding has provided a crucial impetus here.
Examining implementation at the domestic level in recipient countries,
it becomes clearer that other issue areas compete for attention, and that
some actors follow their own interests, or simply ignore the problem.
The Bangladeshi government does not accept the Rohingya as refugees
and does not respect international refugee law. It essentially rejects their
local integration. The South Sudanese government barely functions. It
has left the provision of basic services to the international community.
The fact that norms are not well translated or implemented can thus
better be explained by both the lack of interest and low capacities of
the national governments, than by challenges over the meaning of the
norms or the norm cluster. This contrasts with the international level,
where—the possibilities of—more contentious debates play a central role
in institutionalization.
At the local or field level, humanitarian organizations invest increas-
ingly in their own capacity building and some establish partnerships with
inclusion-focused NGOs to build expertise (Funke, 2022b, 388). But the
implementation of the inclusion norm cluster does not follow a linear path
and often still depends on the efforts of dedicated individuals. Inclusion
has still not established itself as a cross-cutting issue in all programs and
organizations.
Interestingly, the robustness of the disability inclusion norm cluster or
the lack thereof during implementation cannot be explained by contes-
tation (Wiener, 2014), deliberate norm violation or explicitly intended
non-compliance (Panke & Petersohn, 2012), as it is commonly argued
in IR norm research. Rather, other policy priorities as in the case of
Bangladesh, or lack of capacities in South Sudan, explain the lack of
implementation. Hence, the two very different countries both give a low
priority to translating complex normative obligations of disability inclu-
sion into concrete policy steps. In other words, with the logic of action of
the CRPD and the IASC Guidelines, errors of omission explain slow norm
implementation better than theories of deliberate contestation, violation,
and willful non-compliance. We coin this process as norm evasion, which
needs to be added to the lists of concepts that explains (limited) norm
robustness. Empirically, in contrast with norm contestation, violation,
and compliance, which are usually applied at the institutional level, norm
114 C. FUNKE AND D. DIJKZEUL

evasion applies particularly to the field level. One of the reasons is that
normative obligations, as in the case of the CRPD in complex norm
clusters, never come with clear priorities, resources, or a ready-made
handbook on how to prepare the ground for their implementation.
In sum, explaining variation in institutionalization, translation, and
implementation, and how this affects the robustness of the norms or norm
clusters in question requires substantial research at all levels of global
governance. Explaining what works at one level of global governance may
require concepts, such as norm contestation at the international level, that
do not work well at other levels of global governance.

6.3 Strengthening Disability Inclusion

in Crises: Linking and Integrating
Humanitarian Action and Development
So far, this book has shown that although many organizations have made
some progress toward translating inclusion, a considerable amount of
work is still necessary before they will be able to fully implement the
disability inclusion norm cluster. The following recommendations will
help in this respect. Ultimately, improvements in the lives of persons with
disabilities determine whether the inclusion norm cluster and concomitant
policies have been successful. Hence, this section indicates and discusses
recommendations for the various levels of global governance that can
contribute to further improvements.2

6.3.1 All Actors

• All actors should utilize and integrate the IASC Guidelines into their
policies and processes in responding to humanitarian crises. This
implies implementing the four “must-do” actions of (1) promoting
meaningful participation; (2) removing barriers; (3) empowering
persons with disabilities and supporting their capacity development;
and (4) disaggregating data for monitoring inclusion, using the
Washington Group Questions where possible, and paying attention

2 These recommendations complement Chapter 9 of the IASC Guidelines, which

explains the different roles and responsibilities of humanitarian actors and other
stakeholders.
 6 ANALYSIS ACROSS ACTORS AND LEVELS 115

to the roles and responsibilities of different stakeholders throughout

the humanitarian program cycle.3

6.3.2 International Level: States in Intergovernmental

Organizations
• Encourage all UN member states to ratify or accede to the CRPD
and its Optional Protocol, especially those that are traditionally
reluctant to become party to international Conventions.
• Make the CRPD and its Optional Protocol accessible through trans-
lations into local languages, including easy-to-read versions and sign
language.
• Contribute to discussions of the Committee on the Rights of Persons
with Disabilities and advocate for a regular exchange on Article 11
on persons with disabilities in situations of risk and humanitarian
emergencies.
• Organize side events and other opportunities for exchange during
meetings of the Conference of States Parties to the CRPD to
strengthen institutionalization, translation, and implementation.
• Support the work of the Special Rapporteur on the rights of persons
with disabilities in the context of situations of risk, including armed
conflict, humanitarian emergencies, and natural disasters.
• Continue monitoring disability inclusion throughout the humani-
tarian programming cycle.

6.3.3 National Level—Donor Governments

• Design humanitarian policies with a disability focus and include an
accountability mechanism. Ensure that persons with disabilities and
their representative organizations can meaningfully participate in this
process. Ensure that they represent the diversity of persons with
disabilities.

3 The humanitarian program cycle is the joint humanitarian programming process at

the country level led by OCHA. This process includes the Multi-sector Initial Rapid
Assessments immediately after a disaster. In somewhat more chronic crises, it includes
the Humanitarian Needs Overviews and Humanitarian Response Plans, as well as impact
assessments and other evaluations.
116 C. FUNKE AND D. DIJKZEUL

• Establish accessible information management systems and carry out

evaluations, not just of institutionalization, but also of translation
and especially implementation.
• Encourage and enable staff of donor agencies to regularly participate
in trainings on disability inclusion, for example on “Introduc-
tion to disability-inclusive humanitarian action” developed by the
Global Reference Group on Inclusion of Persons with Disabilities in
Humanitarian Action, or the course of the UN System Staff College.
• Establish a dedicated disability inclusion focal point for humanitarian
action and disaster risk reduction for implementing partners in the
responsible ministries and/or departments.
• Provide sustainable and reliable funding for implementing partners,
especially OPDs. This is also becoming more important as many
crises are becoming increasingly protracted.
• Support international organizations, recipient governments, human-
itarian NGOs, and OPDs with implementing these recommenda-
tions. Policies with clear timelines and deliverables help in this
respect.

6.3.4 National Level—Recipient Governments

• In line with the CRPD and the Humanitarian Disability Charter,
design national laws and policies with a disability focus and include
accountability mechanisms.
• Ensure that persons with disabilities and their representative organi-
zations can meaningfully participate in this lawmaking and policy
formulation process. Ensure that they represent the diversity of
persons with disabilities.
• Regularly review and/or establish accessible government services.
• Establish accessible information management systems on disability
inclusion.
• Enable national authorities who coordinate with humanitarian part-
ners to participate in regular training courses on disability inclusion.
• Ensure that national household surveys, Humanitarian Needs
Overviews, and national censuses incorporate the Washington Group
Short Set on Functioning to generate more reliable data on disability.
 6 ANALYSIS ACROSS ACTORS AND LEVELS 117

• Establish a dedicated disability inclusion focal point to promote and

monitor inclusion.
• Support the founding and functioning of OPDs.

6.3.5 Interorganizational Level: Strategic Management

of Humanitarian Organizations
• Design inclusion policies with clear indicators and accountability
mechanisms.
• Establish accessible information management systems, accountability
mechanisms, and monitoring tools.
• Systematically evaluate and report on disability.
• Include disability in results frameworks and response plans.
• Invest in capacity building of staff at all levels of the humanitarian
response.
• Contribute to the revision of Sphere and the Core Humanitarian
Standard regarding inclusion.
• Establish a dedicated disability focal point to monitor inclusion and
support country and field teams.
• Ensure sufficient resources are allocated to reasonable accommoda-
tions and facilities for persons with disabilities.
• Organize side events and other opportunities for exchange among
States Parties, UN organizations, NGOs, OPDs, and persons with
disabilities during meetings of the Conference of States Parties to
the CRPD.
• Engage in joint evaluations to assess the degree of progress with
disability inclusion.

6.3.6 Local Level: Humanitarian Organizations at Country

or Field Level
• Implement the four “must-do” actions throughout the humanitarian
program cycle in line with the IASC Guidelines on Inclusion of
Persons with Disabilities in Humanitarian Action.
• Invest in capacity building of staff, including dedicated focal points
on disability inclusion in the cluster system.
• Hire and work with persons with disabilities.
118 C. FUNKE AND D. DIJKZEUL

• Monitor and evaluate disability inclusion in order to better under-

stand implementation processes and impact.
• Think through and ensure follow-up actions to gender, age, and
disability disaggregated data.

References
Betts, A., & Orchard, P. (Eds.). (2014). Implementation and world politics. How
international norms change practice. Oxford University Press.
Finnemore, M., & Hollis, D. B. (2016). Constructing norms for global
cybersecurity. American Journal of International Law, 110(3), 425–479.
Funke, C. (2022a). Durable solutions: Challenges with implementing global norms
for internally displaced persons in Georgia. Berghahn Books.
Funke, C. (2022b). No context is too challenging: Promoting, doing and
achieving inclusion in the humanitarian response in South Sudan. Interna-
tional Review of the Red Cross, 105(922), 375–395.
Funke, C., & Dijkzeul, D. (2021). Mainstreaming disability in humanitarian
action. A field study from Cox’s Bazar, Bangladesh. Retrieved May 8, 2023,
from https://www.hi-deutschland-projekte.de/lnob/wp-content/uploads/
sites/2/2021/08/mainstreaming-disability-in-humanitarian-action-a-field-
study.pdf
Panke, D., & Petersohn, U. (2012). Why international norms disappear some-
times. European Journal of International Relations, 18(4), 719–742.
Wiener, A. (2014). A theory of contestation. Springer.
 6 ANALYSIS ACROSS ACTORS AND LEVELS 119

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/
by/4.0/), which permits use, sharing, adaptation, distribution and reproduction
in any medium or format, as long as you give appropriate credit to the original
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The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 CHAPTER 7

Conclusions

Abstract The concluding chapter summarizes the findings and discusses

the shortcomings of current International Law and IR norm theory.
It highlights the need for a multi-level perspective for studying norm
robustness. Furthermore, it highlights the need to integrate a multi-level,
mixed method approach to norms on diversity and inclusion to under-
stand the impact of norms at the various levels of global governance.
The final section stresses the importance for more comparative research
with other, sometimes overlapping norm clusters (e.g., on gender, racism,
LGBTQI+, or older persons) to deepen our insight on norm develop-
ment and impact, as well as about the interaction of governmental and
non-governmental action at various levels.

Keywords Norm clusters · Impact · Multi-level perspective · Human

diversity · Inclusion · Global governance

7.1 Introduction
This book examined how the disability inclusion norm cluster maintains,
strengthens, or loosens its robustness during processes of institutionaliza-
tion, translation, and implementation. It applied a multi-level Sociology

© The Author(s) 2025 121

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4_7
122 C. FUNKE AND D. DIJKZEUL

of Law approach to better understand the development of disability inclu-

sion in humanitarian crises and the impact of the norm cluster “on the
ground”.

7.2 Disability
International Law and humanitarian action struggle to reflect and incor-
porate human diversity, including the rights of persons with disabilities.
Over the years, International Law and policy have changed more than
actual practice. The CRPD was an important step forward but needed
the 2016 World Humanitarian Summit and its Humanitarian Disability
Charter to strengthen policy attention to inclusion. This in turn led to
the formulation of the 2019 IASC Guidelines and a host of other soft-
law documents. The IASC Guidelines refer to the CRPD and strengthen
disability inclusion as a human rights issue in humanitarian action, in
particular with its four “must-do” actions.
Hence, a broad and increasingly institutionalized consensus now exists
among donors and the humanitarian community that persons with disabil-
ities are not passive subjects of charity but should be—and usually
are—able to make an active contribution to the humanitarian response,
although many public officials, international organizations, scholars, and
persons with disabilities agree that stronger efforts are required to design,
implement, and monitor inclusive humanitarian programs. This also
means that the human rights model of disability is increasingly prevailing
over other disability models, but the older models still linger on in tradi-
tional mindsets and incomplete or vague policies and implementation.
In line with the IASC Guidelines, this book shows that whereas the
four “must-do” actions serve as a useful reference point for humani-
tarian programming, context-specific guidance and capacity development
are often needed. Gaps in their implementation weaken the robustness
of rights-based inclusion. Inclusion-focused organizations, such as HI,
CBM, and Light for the World, play a crucial role in this regard because
they often have more expertise and experience in inclusive humanitarian
action than mainstream actors.
The four “must-do” actions are the component norms of the norm
cluster of inclusive humanitarian action. Humanitarian actors struggle
with the fact that these actions are interconnected. In practice, this means
that in order to address persisting barriers, it is crucial to have solid
data, empower persons with disabilities, and meaningfully engage them in
 7 CONCLUSIONS 123

the humanitarian response. Simultaneously, their meaningful participation

depends on the removal of attitudinal, environmental, and institutional
barriers, their familiarity with their rights and their abilities to make
claims about their needs, as well as the availability of disaggregated
data. Although the four “must-do” actions help to organize inclusive
action across all levels of global governance, many donor governments,
humanitarian organizations, and the humanitarian country teams still lack
concrete strategies that (fully) reflect the “must-do” actions. Yet, such
translation into policies, tools, and indicators is a prerequisite for broad-
ening the collective of included people and successful implementation
in the field. Humanitarian organizations face the dilemma that on the
one hand they need to link the four component norms to enhance effec-
tiveness. On the other, they lack resources and must set priorities. This
underscores the important role of donors in promoting disability inclu-
sion “on the ground”. However, most donors are only at the early stages
of translating the disability inclusion norm cluster into their policies and
must provide more funding. The declining leadership roles of the United
Kingdom and Australia in disability inclusion serves as an uncomfortable
reminder that achieving disability-inclusive humanitarian action requires
consistent determination and prioritization.

7.3 Norm Theory

Theoretically, norms are central to IR, but the three main schools gener-
ally lack an understanding of how norms influence practice. Neo-realists
are right to point out that norms function only slowly or imperfectly
and that state power is crucial, but they are wrong to deny their rele-
vance. All three schools woefully lack in their understanding of translation
and implementation, because they traditionally focus more on states and
international organizations than other actors and therefore fail to see
empirically and theoretically what happens at other levels of global gover-
nance. Ironically, just like many of their International Law colleagues, IR
scholars then often remain stuck in the normative realm, which limits their
ability to discern—the lack of—changes in practice.
Currently, more specific norm theory highlights the composite and
complex character of many norms. The idea that international norms tend
“to be clustered, nested and ‘composite’ in character” (Betts & Orchard,
2014, 10) is not new to IR norm research and International Law, but
this study shows that studying the evolution of norms requires further
124 C. FUNKE AND D. DIJKZEUL

theoretical and empirical refinement. Although norm cluster scholarship

recognizes the “inherently dynamic character” of norms and their contin-
uous evolution (Finnemore & Hollis, 2016, 428), IR and legal scholars
pay too little attention to the conceptual structure of the norm(s) in
question, their relationship to other (component) norms or principles in
other issue areas, and their development and often incomplete impact
across levels of global governance. The concept of “norm clusters” repre-
sents a useful vantage point to describe and analyze various degrees and
forms of norm development in specific humanitarian contexts. The more
component norms a norm cluster has, the more difficult it will become
to speak about norm robustness, because the component norms are
often institutionalized, translated, and implemented at different speeds.
Institutionalization may look impressive for soft law or policies at the
international level, but translation into domestic or organizational policies
and implementation on the ground generally lag behind.
The concept of robustness of norms is too generic to sufficiently
account for the dynamic and composite character of human rights norm
clusters at these different governance levels. Moreover, within norm
clusters robustness also varies for each component norm because the
implementation “on the ground” is challenging and actors may choose
to implement only selected (sets of) component norms instead of the
whole cluster. The cases of disability inclusion show that even when norm
clusters enjoy international commitment and dedicated support, their
translation and implementation varies considerably across geographical
areas, donors, and humanitarian organizations, as well as the component
norms themselves. In sum, “norm robustness” may at first seem more
strongly institutionalized at the global and then (partly) translated into
policies of different actors, but it almost invariably looks more disap-
pointing when analyzing actual implementation at the organizational or
local levels.
Both International Law and IR, traditionally state-centered disciplines,
devote most attention to norm institutionalization among states at the
international level. They often fail to see both the actual suffering and
agency of persons with disabilities. Admittedly, the breadth of component
norms and the number of actors involved make multi-level research quite
demanding and time-consuming. Still, International Law and Human
Rights more specifically, do not exist in a vacuum; in humanitarian
crises, different types of actors interpret, use, and implement a variety
of norms, while others neglect or purposefully violate them. In doing
 7 CONCLUSIONS 125

so, these actors contribute to either norm strengthening, weakening, or

erosion. Also in this respect, we must move beyond both traditional legal
analysis and international policy analysis, to better understand the struc-
tures and interpretation of the norm clusters, and how this relates to
their robustness at different levels of governance. This conclusion affirms
recent research by Price and Sikkink that shows that institutionalizing
norms in International Law and institutions does not guarantee changes
in behavior. Yet, International Law can contribute to behavioral change
over time (Price and Sikkink, 2021, 47). As stated, studying the prac-
tices of states and non-state actors at different levels of global governance
explains more about the (lack of) robustness of a norm cluster than actual
ratification of accession to a treaty.
Our analysis from a Sociology of Law perspective suggests that at the
national policy levels, it takes a long time for a norm cluster to become
robust. Diverging interests and value systems of states in different issue
areas hamper translation and implementation, as happened in Bangladesh,
where the disability inclusion norm lost out against the desire to contain
refugee flows. When looking at the robustness of norm clusters, it is
important to remember that robustness is indeed always partial; the
robustness of the component norms can never be understood at only one
level and varies over time.
From an empirical perspective, the idea of inclusion as a diverse norm
cluster helps to explain the actual variation in norm development. At
the international level, norm contestation—and attempts to avoid it—
play an important role, but at the national level, norm evasion explains
state behavior better. Whereas states still need to translate international
norms better into their policies and advocacy, humanitarian organizations
often lack the capacity to implement these four “must-do” actions with
equal intensity. Put differently, at the organizational level, the robustness
of the inclusion norm becomes a matter of capacity rather than evasion,
contestation, and objection.
Many organizations have begun including the Washington Group
Short Set on Functioning into their assessments and monitoring frame-
works so that they can collect and analyze more disaggregated data,
but they still fail to meaningfully engage the persons they identified
in decision-making and programming. Similarly, despite adapting feed-
back mechanisms to make them more inclusive, many still struggle to
respond to specific requirements of persons with disabilities and ensure
126 C. FUNKE AND D. DIJKZEUL

their meaningful participation, particularly when they have an intellec-

tual disability, hearing impairment, high psychosocial needs, or multiple
disabilities. It is therefore crucial to build capacity at the headquarters
level and in field offices to accelerate both the translation into policies
and the implementation of the norm cluster on the ground.
Crucially, disability inclusion is a strategic issue for the whole organi-
zation, and headquarters need to promote a diversity policy on gender,
age, and other dimensions of diversity in all country operations. This
will enhance equality, foster non-discrimination, and ensure the system-
atic incorporation of persons with disabilities in humanitarian activities at
all stages of humanitarian action (preparedness, response, and recovery).
Donor governments should do more to fund and facilitate these transla-
tion processes. Although a backlash of the disability inclusion norm cluster
seems currently unlikely because its counterfactual validity is still strong,
inclusion norms may become contested and lose relevance if they are not
implemented well enough. Hence, studying norm robustness also requires
more studies of actual translation and implementation over time.
In the introduction of this book, we asked two sub-questions. First,
do norms really change the practices of the actors involved? And if
so, how? Second, what is the impact of these norms on the lives of
persons with disabilities? The answer to the first question is yes, human-
itarian donors, mainstream humanitarian organizations, recipient states,
inclusion-focused organizations, OPDs, and persons with disabilities have
changed their practices, but only imperfectly so. Fostering disability inclu-
sion is a long and arduous process that involves many actors across
the various levels of global governance. Norms effect change, but only
through perseverance and patience of these actors, especially during trans-
lation and implementation. There are setbacks; disability inclusion is not
a linear process but requires constant reinforcement.
Answering the first question automatically leads to answering the
second question. The lives of many persons with disabilities are changing
for the better, but not enough. Most persons with disabilities still face
heightened protection risks and problems with accessing humanitarian
services. In this respect, neither praise nor pessimism are appropriate. The
CRPD and the IASC Guidelines are crucial tools, but they still require far
more support if they are to change the lives of persons with disabilities
further.
 7 CONCLUSIONS 127

7.4 Methodology
Methodologically, the above sections make clear that International Law
and IR must incorporate more approaches from anthropology and
comparative politics, including participatory action research and partic-
ipant observation over time, to understand the impact of norms at the
various levels of global governance. Otherwise, they cannot link norms
and policies to the changes—or lack of them—in the lives of persons with
disabilities and determine the robustness of global norm clusters. Hence,
this book advocates for more multi-level mixed method and longitudinal
research to norms on diversity and inclusion.

7.5 Issues for Further Research

In terms of a research agenda, the processes of institutionalization,
translation, and implementation show that the different levels of global
governance are related but cannot be reduced to each other. A next step
in their study would be to ask how these levels constitute or at least shape
each other mutually. Just as we need to ask what constitutes a collective or
a community, we can ask how in the process of constituting collectives or
communities, levels of global governance are being created (Roepstorff,
2022).
With research on humanitarian crises, more studies on the roles, func-
tions, and impact of different norm clusters in International Law and
IR are required to understand how they regulate or constitute prac-
tices of states, UN, NGOs, other non-state actors, and target groups.
To assess their robustness, we also need more detailed actor-based studies
on their translation and implementation: at the national level, involving
governments; at the operational and strategic levels of an international
humanitarian response, involving the Humanitarian Coordinator and
Humanitarian Country Teams; in individual coordination clusters and
other coordination mechanisms (such as the Central Emergency Response
Fund, the Humanitarian Needs Overviews and Humanitarian Response
Plans); and, finally, at the level of the individual organizations them-
selves, including their leadership, headquarters, and field offices. Just as
we must understand the levels of global governance better, we also need
to understand the different organizational levels better.
128 C. FUNKE AND D. DIJKZEUL

Crucially, we also need more research from the perspective of persons

with disabilities and their OPDs. This often requires substantial participa-
tory field research to gain a thorough understanding of their needs and
capacities, local dynamics, coordination, and the duties, responsibilities,
values, and interests of the organizations and authorities involved in the
humanitarian response.
More generally, comparative research with other, sometimes overlap-
ping or intersecting norm clusters (e.g., on gender, racism, LGBTQI+,
or older persons) would also deepen our insight on norm development,
robustness, and impact, as well as about the interaction of governmental
and non-governmental action at various levels of governance. While this
can be a challenging task, if done well, such International Law and IR
research can shed more light on under-explored issues of human diversity,
inclusion, and norm development in practice.

References
Betts, A., & Orchard, P. (Eds.). (2014). Implementation and world politics. How
international norms change practice. Oxford University Press.
Finnemore, M., & Hollis, D. B. (2016). Constructing norms for global
cybersecurity. American Journal of International Law, 110(3), 425–479.
Price, R., & Sikkink, K. (2021). International norms, moral psychology, and
neuroscience. Cambridge University Press.
Roepstorff, K. (2022). Localisation requires trust. An interface perspective on
the Rohingya response in Bangladesh. Disasters, 46(3), 610–632.
 7 CONCLUSIONS 129

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/
by/4.0/), which permits use, sharing, adaptation, distribution and reproduction
in any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 Index

A Australian Humanitarian
Acceptance of persons with Partnership Rohingya Refugee
disabilities, 30, 33 Response, 55
Access, accessibility, 2, 3, 16, 17, 21, DFAT, 55, 56
23, 30, 33, 46, 49–51, 61, Strategy for Strengthening
63–65, 67, 69, 71, 75, 76, 80, Disability Inclusive
96, 98, 101, 112 Development in Australia, 55
Accountability, 4, 35, 45, 60, 62–64, Austria, 69
78, 97, 115–117
accountability framework, 60
B
Affected population, 51, 60, 66, 81
Bangladesh, 8, 22–24, 55, 73, 80, 82,
Afghanistan, 2, 69
95–97, 99, 100, 102, 103, 113,
Age and Disability Capacity
125
Programme (ADCAP), 73
Bashan Char, in the Gulf of Bengal,
Angola, 69
97
Arms Trade Treaty, 37 Cox’s Bazar, 8, 22–24, 65, 80, 82,
Arria-Formula Meeting, 37 96, 97, 99, 103
Article 11 (of the CRPD), 16, 34, 35, Government of Bangladesh, 23,
62–64, 71, 74, 81, 99, 110, 115 97–99
Asia-Pacific, 96 Barriers
Assistance-based activities, 81 attitudinal barriers, 3, 67, 76, 101,
‘at-risk’ group, 52, 53, 78 123
Australia barriers and facilitators assessments,
Aid Program, 55, 56 24, 67, 71

© The Editor(s) (if applicable) and The Author(s) 2025 131

C. Funke and D. Dijkzeul, Disability Inclusion in Humanitarian Crises,
Palgrave Studies in Disability and International Development,
https://doi.org/10.1007/978-3-031-53809-4
132 INDEX

environmental barriers, 98, 76, 101, Convention on the Rights of Persons

123 with Disabilities (CRPD)
institutional barriers, 3, 67, 76, Ad Hoc Committee of CRPD, 29
101, 123 Committee on the Rights of
Belgium, 44, 53–55 Persons with Disabilities, 36,
Binding, non-binding 53, 81, 115
declaration, 28 Conference of States Parties, 115,
guidelines, 36, 77 117
regulations, 14 Optional Protocol, 29, 47, 50, 96,
rules, 14 100, 103, 115
tools, 36, 38, 77 Coordination, 7, 35, 53, 54, 63, 65,
Brexit, 52 72, 73, 112, 128
Bridge CRPD-SDG training, 74 coordination clusters, 7, 72, 76,
Build Back Better concept, 53 127
coordination mechanism, 66, 73,
127
C Core Humanitarian Standards, 60, 61,
Canada, 44, 53, 54, 58, 69 63, 66, 117
Capacity, 4, 18, 37, 45, 63, 75, 76, Country-Based Pooled Fund (CBPF),
99, 103, 104, 114, 122, 125, 61
126 COVID-19 pandemic, 3, 51, 65
capacity building, 7, 43, 49, 66, 68,
73, 74, 77, 80, 102, 104, 112,
113, 117 D
CARE, 98 Danish Refugee Council, 98
Caregiver, 2, 3, 102 Data collection and monitoring, 7,
Case study, 22, 67, 95–104 43, 68, 73
Central Emergency Response Fund Decision-making, 5, 65, 66, 125
(CERF), 60, 61, 127 Declaration on Disabled Persons, 28
Centre for Disability in Development, Denmark, 44, 53, 54, 59
73 Department of Refugee Affairs of the
Charity, 7, 27, 28, 31, 122 Palestine Liberation
charity model, 7, 28 Organization, 53
Children with disabilities, 3, 31, 34, Development Cooperation, 54, 59, 81
53 Dignity, 28–31, 33, 35, 36, 54, 100,
Christian Blind Mission (CBM), 24, 101
54–56, 62, 64, 73, 74, 122 Disability
Client Response Framework, 75 disability data survey instruments,
Client Responsive Programming 61
Framework (International Rescue disability inclusion, 4–8, 16, 18, 19,
Committee), 75 21, 22, 30, 36–38, 44–57,
Convention on Cluster Munitions, 36 61–63, 66, 68, 74–82, 96,
 INDEX 133

102, 110–113, 115–118, E

122–124, 126 Empowerment, 7, 35, 44, 45, 53, 54,
learning and training 66, 73, 74, 77–79, 81, 99
opportunities on disability Equality, 30, 31, 34, 35, 126. See also
inclusion, 76 Equal opportunity
equality of opportunity, 16, 28, 30,
Disability Inclusion and
33
Accountability Framework (of
gender equality, 54
the World Bank), 44, 60
Equal opportunity, 45, 96
Disability Inclusion in EU External European Disability Forum (EDF),
Action, 50, 57 49, 54
Disability inclusion norm, 5, 6, 8, European Union (EU), 35, 44, 48,
18, 24, 64, 77, 78, 80, 81, 96, 49, 55, 57, 77, 79, 110, 111
98, 99, 103, 104, 110–114, EU-funded humanitarian aid, 48,
121, 123, 125, 126 49, 57
Disability inclusion strategy, 55, 75, European Commission, 48–50, 78,
77, 78, 112 79
European Disability Strategy, 77,
Disability rights movement, 28, 74
79
Disability Support Committee, 55 European Union Institutions, 48
Disaggregated data, 44, 49–51, ECHO, 48, 49, 55, 79
57–59, 61, 63, 70, 71, 77, 79, The Inclusion of Persons with
81, 102, 118, 123, 125 Disabilities in EU-funded
Disaster risk reduction, 36, 48, 52, Humanitarian Operations,
55, 116 48
Exclusion, excluding, 15, 28, 36, 65,
Discrimination, non-discrimination, 2,
68, 98
16–18, 30, 33, 35, 37, 45, 54,
61, 67, 68, 78, 97, 98, 101, 102,
126 F
Diversity, 6, 7, 18, 22, 64, 66, 75, Finland, 54, 55, 77, 79, 110
102, 115–117, 126, 127 Forced displacement, 99
human diversity, 4, 5, 8, 30, 32, Functional limitation, 70. See also
33, 111, 122, 128 Physical limitation
Donor governments, 7, 8, 14, 22,
44–59, 76, 111, 112, 115, 123,
G
126
Gender-sensitive programming, 54
Donor states, 4, 52, 77, 110 Germany, 44, 47, 48, 55, 57, 78
DRG, Disability Reference Group, Strategy for Humanitarian
Reference Group on Inclusion of Assistance Abroad, 47, 48, 81
Persons with Disabilities in Global Action on Disability (GLAD),
Humanitarian Action, 62, 116 54, 55, 80
134 INDEX

Global Compact on Refugees, 36, 51 humanitarian crises, 2, 3, 5, 8, 14,

Global Compact on Safe, Orderly, and 16, 22, 37, 50, 53, 63, 64, 68,
Regular Migration, 36 71, 95, 114, 122, 124, 127
Global Disability Summit, 48, 54 Humanitarian Disability Charter,
Global governance, 5, 6, 8, 14, 18, Charter on Inclusion of Persons
19, 21, 22, 110, 112, 114, with Disabilities in Humanitarian
123–127 Action, 4, 35, 36, 44, 47, 50,
Global Humanitarian Summit, 67 52, 53, 57–60, 80, 99, 110, 116,
Global Reference Group on Inclusion 122
of Persons with Disabilities in Humanitarian Inclusion Standards,
Humanitarian Action, 116 66, 70
Grand Bargain, participation Humanitarian Inclusion Standards for
revolution, 66 Older People and People with
Guidance on Strengthening Disability Disabilities (Age and Disability
Inclusion in Humanitarian Needs Consortium). See also
Assessments and Response Plans, Humanitarian Inclusion Standards
60 Humanitarian Needs Overview
(HNO), 51, 52, 61, 67, 68, 71,
72, 115, 116, 127
H Humanitarian principles
HelpAge International, 73 humanity, 4, 35
HI, Handicap International, impartiality, 4, 35
Humanity & Inclusion, 2–4, 23, independence, 4
34, 68–71, 102 neutrality, 4
Human dignity, 28, 31, 33 Humanitarian program/humanitarian
Humanitarian programming cycle, 37, 46, 63,
access, 3 66, 72, 79, 115, 117, 122
action/assistance, 4, 5, 7, 8, 16, Humanitarian Response Plan, 51, 67,
21, 23, 28, 34–38, 44, 45, 68, 115, 127
47–64, 66, 70, 73, 74, 77–79, Human rights
81, 96, 99, 104, 110, 111, human rights law, international
113, 116, 122, 123, 126 human rights law, 14, 31, 34
arena, 19, 21, 112 model, 27, 31–33, 122
coordination, 17, 76 norms, 17, 19, 30, 124
policy, 4, 5, 7, 8, 35, 54 treaty, 31
response, 4, 36, 51, 65–68, 71–73, Human rights convention
76, 117, 122, 123, 127, 128 Convention Against Torture and
services, 2, 50, 126 Other Cruel, Inhuman or
standards, 61–63 Degrading Treatment or
Humanitarian Coordination and Punishment, 31, 45
Humanitarian Country Teams, Convention on Rights of the Child,
127 31
 INDEX 135

Convention on the Elimination of internal capacities on inclusive

All Forms of Discrimination humanitarian action, 66
against Women, 31 Indicators, 51, 61, 70, 76, 117, 123
International Convention on the Indigenous persons, indigenous
Protection of the Rights of All people, 66
Migrant Workers and Members Indo-Pacific region, 55
of their Families, 31 Institutionalizing, institutionalization,
International Covenant on Civil and 5, 8, 19–22, 24, 63, 78, 82, 95,
Political Rights, 31, 45 99, 103, 110, 112–116, 121,
International Covenant on 124, 125, 127
Economic, Social and Cultural Inter-Agency Standing Committee
Rights, 31 (IASC), 7, 17, 56, 60, 62–64,
66, 67, 70, 71, 73
Internally displaced persons (IDPs),
I
30, 55, 60, 96
IASC Guidelines
Framework on Durable Solutions International Committee of the Red
for Internally Displaced Cross, 17, 35, 46, 61, 75
Persons, 60 Vision 2030 on Disability, 61
Gender Handbook in Humanitarian International Disability Alliance
Action, 60 (IDA), 62, 70, 73, 74
Guidelines of Persons with International Disability and
Disabilities in Humanitarian Development Consortium
Action, 17, 47, 56, 61, 117 (IDDC), 49, 70, 73
Guidelines on Mental Health and International Disability Caucus (IDC),
Psychosocial Support in 32
Emergency, 60 International Federation of Red Cross
Task Team on Persons with and Red Crescent Societies
Disabilities, 62 (IFRC), 61, 62
IASC Results Group 2 (RG2) on Strategic Framework on Disability
Accountability and Inclusion, 62 Inclusion, 61
IASC Task Force 2 on Accountability International Humanitarian Law
to Affected People, 62 (IHL), 14, 15, 28, 34, 35
Impairments International Law, 4–6, 14, 17,
intellectual, 65, 102 19–21, 30, 31, 34, 35, 99,
mental, 32 122–125, 127, 128
physical, 101, 102 International Organization for
sensory, 32 Migration (IOM), 46, 60, 67
Inclusion-focused NGOs, 7, 67, 100, International refugee law, 97, 99,
113 103, 113
Inclusion policy, 44, 103 International relations (IR), 6, 8,
Inclusive humanitarian action, 4, 73, 14–16, 18, 20, 21, 30, 113, 123,
79, 99, 104, 111, 122 124, 127, 128
136 INDEX

constructivist, 15 policy level, 18, 22, 76, 125

liberal, 15, 30 sub-national level, 22
realist, 14 LGBTQI+, 30, 52, 66, 128
International Rescue Committee Light for the World, 100, 122
(IRC), 75 Luxemburg, 55
International standards, 21, 66, 112
Intersectionality, 33
Islamic Relief, 75 M
Operational Framework on Mainstreaming, 48, 53, 81
Protection and Inclusion, 75 mainstreaming disability, 49
protection mainstreaming indicator,
49
J Médecins Sans Frontières (MSF), 75
Japan, 2, 44, 52, 53, 58, 80, 81
Medical model, 7, 28, 32, 68, 81
Annual Report of Japan’s
Minority group, 37, 54
International Cooperation
Mobility, 2, 97
Agency, 53
mobility aids, 98
JICA, 53
Models of disability, 27, 32, 39, 45,
Thematic Guidelines on
122
Disability and
Multiple actions, 18
Development, 53
“Must-do” actions, 18, 24, 63, 64,
White Paper on Development
73, 81, 96, 102, 104, 112, 114,
Cooperation, 53
117, 122, 123, 125
Jordan, 48
Myanmar, 23, 65, 96, 97

L
Leave No One Behind, 48, 60 N
Lebanon, 45 Natural disasters, 34, 52, 69, 81, 115
Levels of analysis Needs assessment, 61, 66, 67, 97, 102
domestic level, 80, 113 Non-state actors, 5, 36, 46, 110, 125,
institutional level, 113 127
international level, 4, 6, 8, 20–22, Norm
28, 30, 38, 51, 63, 73, 77, 78, addressees, 18, 19, 21, 112
110, 112–115, 124, 125 component, 5, 6, 17, 18, 22,
interorganizational level, 7, 56, 81, 122–125
82, 117 development, 6, 14, 20, 21, 44, 96,
local level, country or field level, 110–112, 124, 125, 128
21, 76, 95, 112–114, 117, 124 entrepreneurs, 78, 110, 111
national level, 16, 20–22, 46, 72, evasion, 8, 103, 104, 113, 114, 125
111, 112, 115, 116, 125, 127 global, 8, 20, 127
organizational level, 8, 112, 125, human rights, 17, 19, 30, 124
127 implementation, 82, 113
 INDEX 137

institutionalization, 8, 20, 24, 99, P

124 Palestine, 53
international, 7, 14–16, 19, 20, 63, Participation, meaningful
110, 123, 125 participation, 7, 16, 18, 30, 32,
translation, 8, 20, 77, 80, 82, 99 33, 35, 47, 63–67, 71–73, 76,
Norm clusters, 6, 8, 16, 17, 114, 78, 81, 99, 100, 114, 123, 126
124, 125, 127, 128 Participation of persons with
Norm robustness, 8, 16, 18, 19, 38, disabilities, 29, 38, 46, 47, 49,
46, 76, 77, 82, 111, 113, 124, 53, 61, 63–65
126 Passive victims, 97
Norm theory, 6, 8, 18, 111, 123 Philippines, 69
Norway, 44, 53, 54, 58 Physical limitation, 27
Norway’s Humanitarian Strategy, Poland, 50
80 Policy, 6, 8, 15, 18, 22, 33–35, 45,
Norwegian Refugee Council, 75, 46, 48, 50, 56, 60–62, 68,
98 75–78, 96, 100, 103, 110, 112,
113, 116, 122, 125, 126
policy documents, 22, 46, 77, 78
O policy mechanism, 19, 20
Office for the Coordination of Practices, 4–8, 16–18, 22, 34, 38, 46,
Humanitarian Affairs (OCHA), 2, 48, 51, 61, 63, 64, 66–68, 73,
4, 17, 51, 60, 65, 67, 96, 115 76, 77, 79, 81, 96, 104, 110,
Official Development Assistance 111, 122, 123, 125–128
(ODA), 54, 77, 78 disability inclusive practices, 61
OHCHR, UN High Commissioner good practices, 7, 56, 73, 75, 81
for Human Rights, 28, 34, 36 Protection from gender-based
1951 Refugee Convention, 103 violence, 54
Operational Policy and Advocacy Protection of persons with disabilities,
Group (OPAG), 62 34–36, 47, 52, 64, 77
Organization for Economic Protection, protecting, 2, 5, 7, 14,
Cooperation and Development’s 21, 23, 31, 34, 35, 45, 49, 50,
Development Assistance 54, 55, 59, 68, 69, 96, 97, 100,
Committee (OECD-DAC), 44, 103, 111, 112
49, 79, 81 Protection risks, 126
OECD-DAC Disability Inclusion
Marker, 44, 49, 56–59, 77, 78
Ottawa Convention, Convention on Q
the Prohibition of the Use, Qualitative mixed method, 22
Stockpiling, Production and
Transfer of Anti-Personnel Mines
and on their Destruction, 37 R
Oxford Brookes University, 73 Rakhine, Myanmar, 96
138 INDEX

Red Cross and Red Crescent National Disability and Inclusion

Movement, 4, 14, 61 Policy, 100
RedR UK, 73 National disability movement, 100
Refugee, 17, 23, 30, 36, 55, 64, National Inclusive Education Policy,
96–98, 103, 113, 125 100
refugee camp, 23, 24, 53, 96, 103 South Sudan Development Plan,
refugee law, 14, 34, 35, 99 100
Representative organizations, 28, 35, South Sudanese Civil War, 99
36, 73, 76, 115, 116 Transitional Constitution of the
Rights and Protection of Persons with Republic of South Sudan, 100
Disabilities Act, 96 Specific requirements, 4, 14, 48, 52,
Rights-based approach, 29, 36, 77, 80 67, 125
Rights of persons with disabilities, 4, Sphere, 60–62, 69, 117
18, 28, 29, 31, 37, 38, 49, 57, Sphere Handbook, Sphere
68, 73, 97, 100, 115, 122 Humanitarian Charter and
Rohingya Minimum Standards in
Rohingya, Forcibly Displaced Humanitarian Response, 60
Myanmar Nationals, 65, 97 Sphere Project on Minimum
Rohingya Refugee Crisis, 8, 96 Standards in Humanitarian
Rohingya Refugee Response, 24, Action, 61
54, 68, 73 Stakeholders, 15, 33, 35, 62, 77, 114,
Teknaf Upazila, 23, 96 115
Ukhiya Upazila, 23, 96 States Parties, 17, 19, 29, 31, 33–35,
80, 117
Stigma, 54, 64, 98
S Strategy for the Rights of Persons
Safe space for children and women, 98 with Disabilities 2021-2030, 49,
Self-help groups, 55, 65, 66 78, 79
Sendai Framework for Disaster Risk Support person, 3, 73, 98
Reduction, 52 Sustainable Development Goals
Services, 2, 3, 33–35, 51, 55, 62, 65, (SDG), 36, 60, 74
67, 69, 71, 73, 98–102, 104, Sweden, 29, 44, 54, 58, 69, 78
112, 113, 116 Switzerland, 44, 54, 58, 80
Social and Cultural Rights, 31 Syrian Arab Republic, Syrian Civil
Social model, 28, 29, 32 War, 3, 37
Soft law, 36, 38, 60, 63, 110, 124
Somalia, 65
South Sudan T
Ministry of Education, Science and Tajikistan, 45
Technology, 100 The Code of Conduct for the
Ministry of Gender, Child Welfare, International Red Cross and Red
Humanitarian Affairs and Crescent Movement and NGOs
Disaster Management, 100 In Disaster Relief, 14, 60
 INDEX 139

The Netherlands, 44, 55 UN organizations, 4, 76, 80, 110,

Policy Letters of the Netherlands, 117
80 UN System, 21, 76, 112
The World We Share, Denmark, 54 United States (US)
Tonga, 45 OFDA, 46
Translating, translation, 5–8, 20–22, USAID, 45, 46, 78
24, 30, 35, 38, 44, 56, 63, 67, US Bureau of Populations,
74–78, 80–82, 103, 110–116, Refugees and Migration, 45
120, 123–127 US State Department, 45
US Strategy on Women, Peace, and
Security, 46
U
UN Secretary-General, 60
UN Commission of Social
Agenda for Humanity, 60
Development, 29, 79
UN Security Council (UNSC), 37, 47
UN Commission on the Status of
Resolution 2475, 37, 47, 50
Women, 79
UN Special Rapporteur, 68
UN Disability Inclusion Strategy, 60,
112
UN Disability Statistic Database, 69
UN General Assembly resolutions, 4, W
28, 29 Washington Group
UN Human Rights Council, 38, 79 Washington Group on Disability
United Kingdom (UK), 44, 48, 50, Statistics, 32, 70
51, 58, 73, 77–80, 110, 123 Washington Group Questions, 70,
FCDO, DFID, 50–52, 60, 61, 79, 114
113 WG-SS, Washington Group Short
Strategy for Disability Inclusive Set on Functioning, 70–72,
Development 2018-23, 102, 104, 116, 125
“Now is the Time, 50 WHO, 2, 60, 68–70
United Nations Children’s Fund WHO’s International Classification of
(UNICEF), 2, 3, 46, 60, 62, Functioning, Disability, and
68–70 Health, 70
United Nations Development Women with disabilities, 3, 33, 46
Programme, 70 World Bank, 44, 60, 97
United Nations High Commissioner World Food Programme (WFP), 60,
for Refugees (UNHCR), 45, 51, 62, 67
60, 62, 96 World Humanitarian Summit, 4, 35,
United Nations Statistical 36, 60, 113, 122
Commission, 70
United Nations (UN)
UN agencies, 35, 51, 67, 75, 96 Y
UN entities, 60, 76 Yemen, 69