Last updated 2nd August 2024: Online ordering is currently unavailable due to technical issues. As we resolve the issues resulting from this, we are also experiencing some delays to publication. We are working hard to restore services as soon as possible and apologise for the inconvenience. For further updates please visit our website https://www.cambridge.org/news-and-insights/technical-incident
We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.
Published online by Cambridge University Press: 18 August 2022
Disability inclusion has become a crucial issue for humanitarian action, at least at the international policy level. However, little is known about how humanitarian actors are “doing inclusion” in practice. With a case study on South Sudan, this article examines whether the increase in publications, policy tools and guidelines has made humanitarian action more inclusive for persons with disabilities, and how stakeholders can overcome persisting barriers for persons with disabilities. The article demonstrates noticeable progress in data collection, capacity-building, the removal of barriers and meaningful participation, but humanitarians still lack the skills, confidence and resources to address many persisting barriers. To advance inclusion, donors and humanitarian organizations must invest more time and resources in capacity-building and coordination.
Research for this article has been carried out within the project “Phase 2: Leave No One Behind: Mainstreaming Disability in Humanitarian Action” that was funded by the German Federal Foreign Office. The project has been implemented jointly by Humanity & Inclusion Germany, Christian Blind Mission Germany and the Institute for International Law of Peace and Armed Conflict. The views expressed in this article are those of the author and do not necessarily represent those of Humanity & Inclusion, Christian Blind Mission, the Institute for International Law of Peace and Armed Conflict or the German Federal Foreign Office. The author would like to thank Megan Woo, Ulrike Last and the two anonymous reviewers for their feedback on earlier drafts of this article.
The advice, opinions and statements contained in this article are those of the author/s and do not necessarily reflect the views of the ICRC. The ICRC does not necessarily represent or endorse the accuracy or reliability of any advice, opinion, statement or other information provided in this article.
1 Ghobarah, Hazem Adam, Huth, Paul and Russett, Bruce, “Civil Wars Kill and Maim People – Long After the Shooting Stops”, American Political Science Review, Vol. 97, No. 2, 2003, p. 189CrossRefGoogle Scholar.
2 Inclusion Europe, “Weeks of Horror. And We Cannot Possibly Leave”, press release, 2022, available at: www.inclusion-europe.eu/weeks-of-horror-and-we-cannot-possibly-leave/ (all internet references were accessed in August 2022).
3 Human Rights Watch, “UN: High Risk in Conflicts for Children with Disabilities. Urgently Strengthen Protection, Assistance, Inclusion”, press release, New York, 2 February 2022, available at: www.hrw.org/news/2022/02/02/un-high-risk-conflicts-children-disabilities.
4 Handicap International, Disability in Humanitarian Context: Views from Affected People and Field Organisations, Lyon, July 2015, p. 24.
5 International human rights law: Convention on the Rights of Persons with Disabilities, Convention on the Rights of the Child. Human rights principles: dignity, non-discrimination, participation and inclusion, accessibility, age and gender equality. International humanitarian law: 1949 Geneva Conventions and their Additional Protocols. Humanitarian principles: humanity, impartiality, neutrality. Existing and emerging global humanitarian standards: Humanitarian Charter and Minimum Standards in Disaster Response (Sphere Standards), Minimum Standards for Age and Disability Inclusion in Humanitarian Action, Minimum Standards for Child Protection in Humanitarian Action.
6 Charter on Inclusion of Persons with Disabilities in Humanitarian Action, available at: https://humanitariandisabilitycharter.org/.
7 UNSC Res. 2475, 20 June 2019.
8 IASC, IASC Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action, 2019 (IASC Guidelines), available at: https://interagencystandingcommittee.org/iasc-task-team-inclusion-persons-disabilities-humanitarian-action/documents/iasc-guidelines.
9 Brigitte Rohwerder, Disability Inclusion: Topic Guide, GSDRC, University of Birmingham, November 2015, p. 5.
10 Degener, Theresia, “Disability in a Human Rights Context”, Laws, Vol. 5, No. 35, 2016, p. 13CrossRefGoogle Scholar.
11 UN, UN Disability Inclusion Strategy, 2019, available at: www.un.org/en/content/disabilitystrategy/.
12 IASC Guidelines, above note 8, p. 9; UN, above note 11, p. 20.
13 For exceptions, see Carolin Funke and Dennis Dijkzeul, From Commitment to Action: Towards a Disability-Inclusive Humanitarian Response in South Sudan, 2022, available at: https://tinyurl.com/426jn43z; Flora Cohen and Lauren Yeager, “Task-Shifting for Refugee Mental Health and Psychosocial Support: A Scoping Review of Services in Humanitarian Settings through the Lens of RE-AIM”, Implementation Research and Practice, Vol. 2, 2021; Carolin Funke and Dennis Dijkzeul, Mainstreaming Disability in Humanitarian Action: A Field Study from Cox's Bazar, Bangladesh, 2021, available at: https://tinyurl.com/mv2w8yna; Augustinavicius, Jura L., Greene, M. Claire, Lakin, Daniel P. and Tol, Wietse A., “Monitoring and Evaluation of Mental Health and Psychosocial Support Programs in Humanitarian Settings: A Scoping Review of Terminology and Focus”, Conflict and Health, Vol. 12, No. 9, 2018CrossRefGoogle ScholarPubMed.
14 Krasner, Stephen D. and Risse, Thomas, “External Actors, State-Building and Service Provision in Areas of Limited Statehood: Introduction”, Governance, Vol. 27, No. 4, 2014, p. 549CrossRefGoogle Scholar.
15 E-Mail exchange with inclusion expert from HI (on file with author).
16 Light for the World, “A First for South Sudan's Disability Movement”, press release, 2020, available at: www.light-for-the-world.uk/news/a-first-for-south-sudans-disability-movement/. Members include the South Sudan Association of the Visually Impaired, the South Sudan Women with Disabilities Network, the South Sudan National Association for the Deaf, and the Jubek State Union of the Physically Disabled.
17 In total, five women and five men participated in Yei and four women and seven men participated in Yambio. These focus group discussions were facilitated by HI staff, and notes of the discussions were shared with the author afterwards.
18 Several interview partners had a disability, and some organizations had a dual mandate, which means that they were active in both the humanitarian and development sectors. All interviews were recorded, transcribed and analyzed using the MAXQDA software application. The names and affiliations of the interview partners will remain anonymous. Although the data are not representative for the whole humanitarian response in South Sudan, they still provide useful insights into the work of various key actors on disability inclusion, remaining gaps, ongoing challenges and progress, as well as inviting more in-depth and longitudinal field research.
19 Bertelsmann Stiftung, Transformation Index BTI 2022 Country Report: South Sudan, Gütersloh, 2022.
20 International Crisis Group, South Sudan's Splintered Opposition: Preventing More Conflict, Juba, Nairobi and Brussels, 25 February 2022.
21 “Ratification Status for South Sudan”, UN Treaty Body Database, available at: https://tbinternet.ohchr.org/_layouts/15/TreatyBodyExternal/Treaty.aspx?CountryID=215&Lang=en.
22 South Sudan Human Rights Defenders Network, Human Rights Watch and Amnesty International, South Sudan: Human Rights Priorities for the Government of the South Sudan, 3 February 2022, p. 2, available at: www.amnesty.org/en/documents/afr65/5196/2022/en/.
23 Care International, “10 Years from Independence and South Sudan Is One of the Deadliest Places to Be an Aid Worker”, 19 August 2021, available at: www.care.org/news-and-stories/press-releases/10-years-from-independence-and-south-sudan-is-one-of-the-deadliest-places-to-be-an-aid-worker/.
24 Nyagoah Tut Pur, “Surge in Attacks on Aid Workers in South Sudan. Authorities Should Improve Protection, Investigate Attacks”, press release, Human Rights Watch, 4 March 2022, available at: www.hrw.org/news/2022/03/04/surge-attacks-aid-workers-south-sudan.
25 UN Office for the Coordination of Humanitarian Affairs (OCHA), Humanitarian Needs Overview: South Sudan, February 2022, p. 6.
26 Ibid.
27 Ibid.
28 Ibid., p. 16.
29 Office of the UN High Commissioner for Refugees (UNHCR), “South Sudan”, 2022, available at: www.unhcr.org/south-sudan.html.
30 Ibid.
31 OCHA, “South Sudan Humanitarian Snapshot”, December 2021, available at: https://reliefweb.int/sites/reliefweb.int/files/resources/south_sudan_humanitarian_snapshot_december_0.pdf.
32 South Sudan Association of the Visually Impaired (SSAVI), South Sudan UPR Report – 2016: Coalition of Organizations of Persons with Disabilities, 2016, p. 1.
33 World Health Organization and World Bank, World Report on Disability, Geneva, 2011.
34 OCHA, above note 25, p. 14.
35 For a comprehensive overview of South Sudan's legal obligations vis-à-vis persons with disabilities, see Innocentia Mgijima-Konopi, Theophilus Odaudu and Reshoketswe Mapokgol, “Country Report: South Sudan”, African Disability Rights Yearbook, Vol. 7, Pretoria University Law Press, Pretoria, 2019.
36 Republic of South Sudan, Ministry of Gender, Child and Social Welfare, Humanitarian Affairs and Disaster Management, South Sudan National Disability and Inclusion Policy, 2013, p. 13.
37 Daniel Danis, “Save the Children Supports the Review of Education Policy Document”, press release, Save the Children, Juba, 30 October 2021, available at: https://southsudan.savethechildren.net/news/save-children-supports-review-education-policy-document.
38 Mark Deng, “South Sudan's Constitution Making Process Is on Shaky Ground: How to Firm It Up”, The Conversation, 10 March 2022, available at: https://theconversation.com/south-sudans-constitution-making-process-is-on-shaky-ground-how-to-firm-it-up-177107.
39 International Organization for Migration (IOM) Displacement Tracking Matrix South Sudan, HI and South Sudan CCCM Cluster, Disability and Inclusion Survey: Wau PoC AA, 31 October 2019; IOM Displacement Tracking Matrix South Sudan, HI and South Sudan CCCM Cluster, Disability and Inclusion Survey: Malakal Protection of Civilians Site, 15 February 2021; IOM Displacement Tracking Matrix and HI, Access to Humanitarian Services for People with Disabilities: Situational Analysis in Bentiu Protection of Civilians Site, South Sudan, 2018.
40 Daniel P. Sullivan, Do Not Forget: Aiding and Protecting Civilians in South Sudan, Refugees International, South Sudan, 13 January 2022, p. 2.
41 See above note 39.
42 HI, Barriers and Facilitators Assessment Report for Accessible Education in Buluk A1 Primary School, South Sudan, 2017, p. 6; HI, Barriers and Facilitators Assessment Report for Accessible Education in Torit East Primary School, South Sudan, 2017, p. 6.
43 HI, Barriers and Facilitators Assessment Report for Accessible Health Services in Juba Teaching Hospital, South Sudan, 2017, pp. 11–13; HI, Barriers and Facilitators Assessment Report for Accessible Health Services in Torit State Hospital, South Sudan, 2017, pp. 11–13.
44 HI, Juba Teaching Hospital, above note 43, pp. 11–13; HI, Torit State Hospital, above note 43, pp. 11–13.
45 Focus group discussions with persons with disabilities and OPD representatives, Yambio, May 2021 (on file with author).
46 Ibid.
47 OCHA, above note 25, p. 29.
48 Focus group discussion with persons with disabilities and OPD representatives, Yei and Yambio, May and June 2021 (on file with author).
49 South Sudan Human Rights Defenders Network, Human Rights Watch and Amnesty International, above note 22, p. 8.
50 OCHA, South Sudan: Reporting Organizations Operational Presence (3W: Who Does What, Where), December 2021, available at: www.humanitarianresponse.info/sites/www.humanitarianresponse.info/files/documents/files/ss_20220130_3wop_county_level_december_final.pdf. The sectors are: (1) health; (2) nutrition; (3) food security and livelihoods; (4) protection; (5) water, sanitation and hygiene; (6) education; (7) shelter and non-food items; (8) camp coordination and camp management; and (9) logistics. In total, fifty-two international NGOs, forty-six national NGOs and six UN agencies were involved in the response.
51 These were ACTED, the Danish Refugee Council, UNHCR and the IOM.
52 These were the IOM and World Food Programme.
53 OCHA, South Sudan: 2020 Humanitarian Response in Review, 2020, p. 1, available at: https://reliefweb.int/sites/reliefweb.int/files/resources/south_sudan_humanitarian_response_in_review_2020.pdf.
54 The five largest recipients of aid were, in descending order, Syria, Yemen, Lebanon, South Sudan and the Democratic Republic of the Congo. See Development Initiatives and Global Humanitarian Assistance, Global Humanitarian Assistance Report 2021, 2021, p. 10.
55 Médecins Sans Frontières, “Inclusion of Persons with Disabilities: 6 Keys for Inclusion”, Geneva, available at: https://disabilityinclusion.msf.org/assets/files/IPWD_Guideline_KeyPPLs_EN.pdf; Save the Children International, Save the Children's Disability Inclusion Policy: Lifting Barriers, Realizing Equality, London, 2021; World Vision International, Guidelines on Inclusion of Persons with Disabilities, Monrovia, CA, available at: www.wvi.org/sites/default/files/Guidelines_on_Inclusion_of_Persons_with_Disabilities.pdf; International Rescue Committee, Inclusive Client Responsiveness: Focus on People with Disabilities and Older People, New York, May 2021.
56 Global Disability Summit, “Commitments”, 2022, available at: www.globaldisabilitysummit.org/commitments.
57 OCHA, Humanitarian Needs Overview: South Sudan, 2018.
58 OCHA, above note 25.
59 The Washington Group on Disability Statistics has developed tools for measuring disability in line with the functional approach of the World Health Organization's International Classification of Functioning Disability and Health. They avoid the term “disability” and only address limitations in undertaking basic activities. The WGQ-SS focuses on six domains, namely seeing, hearing, walking, remembering or concentrating, self-care, and communicating. See Washington Group on Disability Statistics, WG Short Set on Functioning (WG-SS), 2020, available at: www.washingtongroup-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/.
60 In collaboration with the Shelter Non-Food Items Cluster, Camp Management and Camp Coordination Cluster, Protection Cluster, Gender-Based Violence Sub-Cluster, Child Protection Sub-Cluster, Education Cluster, Food Security Cluster, Water Sanitation and Hygiene Cluster and Health Cluster. IOM Displacement Tracking Matrix South Sudan and World Food Programme, Urban Multi-Sector Needs, Vulnerabilities and COVID-19 Impact Survey (FSNMS+): Juba Town, 31 March 2021 (Juba Impact Survey), p. 11; IOM Displacement Tracking Matrix South Sudan, Urban Multi-Sector Needs, Vulnerabilities and COVID-19 Impact Survey (FSNMS+): Bentiu/Rubkona Town, 12 August 2021 (Bentiu/Rubkona Impact Survey), p. 12.
61 Interview with a representative of a UN agency, June 2021 (on file with author).
62 Juba Impact Survey, above note 60, p. 8; Bentiu/Rubkona Impact Survey, above note 60, p. 9.
63 “Universal design means the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design”: see Convention on the Rights of Persons with Disabilities, 13 December 2006 (entered into force 3 May 2008), Art. 2.
64 Interview with HI staff member, June 2021 (on file with author).
65 Interview with a representative of Light for the World, July 2021 (on file with author).
66 Interview with a representative of a UN agency, June 2021 (on file with author).
67 Interview with HI staff member, August 2021 (on file with author).
68 Ibid.
69 HI, Torit East Primary School, above note 44, p. 6.
70 SSAVI, above note 32, p. 1.
71 Interview with a representative of a mainstream NGO, June 2021; interview with a representative of HI, August 2021; interview with a representative of Christian Blind Mission, July 2021 (all on file with author).
72 Interviews with a representative of an international mainstream NGO and cluster co-lead, June 2021; interview with a representative of an OPD, August 2021 (both on file with author).
73 Interview with a representative of a UN agency, June 2021 (on file with author).
74 Ibid.
75 Ibid.
76 Interview with a representative of an international NGO, June 2021 (on file with author).
77 Interview with a representative of a UN agency, June 2021 (on file with author).
78 Interview with a representative of a UN agency, online, July 2021 (on file with author).
79 E-mail exchange with a representative of HI (on file with author).
80 Interview with a representative of an inclusion-focused NGO, August 2021 (on file with author).
