Introduction
Many countries in conflict face routine humanitarian crises. The use of a humanitarian-dominated approach in a conflict setting necessarily affects State priorities as well as how the State relates to its citizens through service provision, development opportunities, political space and so forth. In addition, the humanitarian paradigm impacts how, and which, international actors engage with the given State.
Given the historical medical and charity approaches to disability,Footnote 1 this context can, and does, influence how disability issues are handled in humanitarian operations that have an armed conflict dimension. This paper seeks to explore the extent to which a humanitarian-focused framework facilitates or inhibits inclusion of and participation by persons with disabilities. It asks whether the existence of armed conflict exacerbates this dynamic, acknowledging that armed conflict is fluid, frequently changing in intensity, tempo and geographical coverage. This latter point also means that State-building, development and reconciliation initiatives inevitably take place against this backdrop. As such, a third consideration that will be explored is how much the absence of a defined aftermath to a conflict affects the inclusion of disability voices in the reconciliation, development and State-building agendas.
The experience of Somalia will be used to illustrate these points. Somalia has lurched from one humanitarian crisis to another and continues to deal with conflict and terrorism. Despite this, Somalia has made efforts to reinforce its human rights framework within the broader State-building process, including with the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2019. Showing its commitment to the issue, the Somali government quickly passed legislation to establish a National Disability Agency, which has a broad promotional and representational mandate, as well as data collection and management and resource mobilization. The challenge that the NDA and other emerging actors in the disability arena will face is how to navigate the long-standing humanitarian framework, a civil war legacy and ongoing conflict and terrorism.
The Somali context
Somalia gained independence in 1960, forming a unitary system of government. In 1969, the Somali Republic's second president, Abdirashid Ali Sharmake, was assassinated, and Siad Barre, a military officer, took power on 21 October in what is referred to as a bloodless revolution.Footnote 2 Siad Barre suspended the Constitution and initially governed through the twenty-five-member Supreme Revolutionary Council, renaming the country the Somali Democratic Republic. His governance became increasingly repressive and brutal,Footnote 3 leading to a loose alliance of opposition groups overthrowing him. This alliance did not survive, however, resulting in a civil war breaking out in the early 1990s. The subsequent two decades were marked by warlordism, clan conflict, governance by the Islamic Courts Union, and the emergence of Al-Shabaab. A Transitional Federal Government was formed in 2004 in Kenya, paving the way for the establishment of the Federal Government of Somalia in 2012. Prior to the government's return to Somalia, famine was declared in 2011, leading to significant displacement and a reported 260,000 deaths. Since 2012, key governmental priorities have included the implementation of federalism, a process that is still under way. While five federal member States have been created, certain boundaries remain undelimited.Footnote 4 In addition, the Constitution, which would provide the contours of power-sharing and resolve some outstanding federalism questions, remains provisional and under review. At the time of writing, Somalis are facing a drought and possibly an impending famine, having only just emerged from a 2017 drought, floods in 2019, locust invasions in 2019 and 2020, and of course the COVID-19 pandemic.
The extended periods of conflict and political instability have resulted in Somalia continuing to rely heavily on humanitarian assistance to respond to the conflicts, the effects of warfare, cyclical droughts, floods, and climate change-induced degradation, which is increasingly affecting livelihoods, further exacerbating displacement.
Historical approach to disability
Historically, the Somali Ministry of Labour and Social Affairs (MoLSA) led disability-related initiatives. With the destruction of government archives,Footnote 5 however, information on how disability was addressed is limited. Nevertheless, in discussions with Somalis, it is evident that disability was understood as a social welfare issue in line with then president Siad Barre's scientific socialism as well as the global approach to disability in the 1980s. For example, graduates from a Mogadishu-based vocational school for men with disabilities were employed in government institutions. During this time, the Somali Disability Cooperative was established to advocate for the inclusion of people with disabilities, with government support.Footnote 6
While the number of people injured and killed in conflict-related incidents is known, the psychological impact of over 30 years of war in Somalia has not been measured.Footnote 7 As is typical in war zones, disabled former combatants in Somalia often actively contribute to advocacy, albeit more with a focus on acquired disabilities (and challenges around gender in a patriarchal society). For example, in Mogadishu during the 1980s, the government implemented a housing project for former military personnel who had become disabled while serving. Shops and offices for rent and a popular cinema were part of this project to generate income for these military personnel.Footnote 8
Legal and policy frameworks
With the establishment of a Federal Government in Mogadishu in 2012, a Provisional Constitution of the Federal Republic of Somalia was drafted. It explicitly guarantees Somali citizens with disabilities equal rights before the law,Footnote 9 and creates a positive obligation in terms of economic and social rights – it ensures that persons with disabilities “who have suffered discrimination get the necessary support to realise their socio-economic rights”.Footnote 10 A National Council on Disability was formed in 2012 with the role of mainstreaming disability into government policy. The Council, an umbrella platform of representatives from various disability groups, was linked to MoLSA.Footnote 11 Also, in 2012 Somalia became the 160th party to the Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on Their Destruction, or Ottawa Convention.Footnote 12
The Ministry of Women and Human Rights Development (MoWHRD) was established under the 2012 government and became operational in 2013. The MoWHRD's broad mandate includes promotion and protection of the rights of persons with disabilities, which were factored into the first Human Rights Road Map adopted in 2013. In 2015, Somalia became party to the UN Convention on the Rights of the Child, providing a basis for advocacy on children with disabilities. In 2017, the then minister for women and human rights development prioritized disability with the launch of the National Disability Road Map, entitled “Inclusion of Persons with Disabilities and Disability Rights in Governance and Development Processes (2017–2019)”.Footnote 13 Following the Ministry's consultations with Somali organizations of persons with disabilities (OPDs),Footnote 14 three priorities were set: first, adoption of a comprehensive law on disability; second, establishment of a National Disability Agency (NDA); and third, ratification of the UNCRPD.Footnote 15 By 30 December 2018, the federal president of Somalia had signed the bill on the NDA into law and in August 2019, Somalia became the 178th party to the UNCRPD. The ratification of the UNCRPD, the UN Convention on the Rights of the Child and the Ottawa Convention complement Somalia's treaty obligations dating from prior to the civil war, which include the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention Against Torture, and the Convention on the Elimination of All Forms of Racial Discrimination. A draft Disability Rights Bill is with the Cabinet, and it is hoped that it will be a priority for Somalia's 11th Parliament.
The situation of persons with disabilities
The number of persons with disabilities in Somalia is unclear,Footnote 16 with the World Health Organization/World Bank global estimate of 15%Footnote 17 being used as the basis for Somalia's Humanitarian Needs Overview as well as other strategies and plans that require figures on disability.Footnote 18 It has nevertheless been acknowledged that the percentage is likely to be higher due to the legacy of war, which includes the collapse of the health system.Footnote 19
While the normative building blocks for disability rights have been put rapidly in place, implementation has not been at a commensurate pace. As the Somalia 2021 Human Rights Report by the US Department of State notes:
The law provides equal rights before the law for persons with disabilities and prohibits the state from discriminating against them. Authorities did not enforce these provisions, and disability rights organizations reported a widespread lack of equal access to education, health services, public buildings, and transportation.Footnote 20
Similarly, Amnesty International has concluded in a report on Somalia that “the rights of most people with disabilities continue to be excluded, and their particular needs and concerns forgotten”.Footnote 21
At the societal level, a 2019 Disability Assessment conducted by UN Human Rights in Somalia found that persons with disabilities are subjected to a range of stereotypes, including regarding a person with a specific impairment as disabled in his or her entirety.Footnote 22 That being said, disability tends to be associated with physical impairments. This necessarily impacts inclusion of all persons with disabilities, particularly invisible disabilities.Footnote 23 Somalis with psycho-social or intellectual disabilities face the challenge of a specific set of cultural beliefs and stereotypes. For example, some Somalis believe that mental disabilities come from evil spirits or the evil eyeFootnote 24 and that Somalis with such disabilities are not part of society.Footnote 25
There are a range of reasons why progress in implementing legal and policy frameworks has not been made. The 10th Parliament's term expired in December 2020, and a drawn-out electoral process prevented the new Parliament from being established until June 2022. This has affected investment in development, and advocacy attention has turned elsewhere. An added factor is another unfolding humanitarian crisis, in the form of an extreme drought, which requires prioritization.Footnote 26
Humanitarianism in a protracted crisis setting
The humanitarian apparatus: Promoting inclusion, minimizing exclusion
The main objective of humanitarian assistance is to address acute rather than chronic needs, often framed as saving lives at immediate risk.Footnote 27 However, this has changed globally, with terms such as “protracted” and “cyclical” being commonly ascribed to a range of humanitarian operations.Footnote 28 There has been a corresponding “rapid expansion of an organised humanitarian system” consisting of mechanisms, normative frameworks, policies and procedures coordinated through “diverse institutions that comprise what in some ways has become the world's humanitarian welfare system”.Footnote 29 Somalia is an example of this. The historical presence and role of humanitarian assistance, which government services have not yet replaced, means that humanitarian actors are engaged in the delivery of basic services such as health care, nutrition and education, food and water, and social protection.Footnote 30
For Somalia, this has meant that “humanitarian aid has become an essential part of the service delivery model” over the long term. Footnote 31 As such, much service delivery is dependent on annualized funding; it is needs-based rather than rights-based. This paradigm should also be considered in the context of how humanitarian assistance has historically operated in Somalia. While the intent is “to alleviate immediate suffering, [humanitarian assistance] has also unwittingly reinforced abusive structures by failing to take into account the political economy of marginalization”.Footnote 32 This was acknowledged in Somalia's 2022 Humanitarian Response Plan, which noted that “[p]eople with disabilities in Somalia face additional barriers and risks, and are often excluded from humanitarian assistance either due to exploitation, pre-existing discrimination, and stigma or due to a lack of adequate consideration”.Footnote 33
These dynamics inevitably impact disability inclusion: the needs-based approach reinforces the welfare paradigm, which is already a significant challenge that persons with disabilities face, as well as structural marginalization. Within the UN-donor humanitarian frameworks, there are nevertheless a range of mechanisms and coordination fora in place that could both support inclusion and minimize exclusion and discrimination. Somalia's Humanitarian Country Team (HCT) is headed by the UN humanitarian coordinator, with the UN Office for the Coordination of Humanitarian Affairs (OCHA) serving as the Secretariat. Through their coordination function, the role of HCTs is to provide strategic guidance and oversight of humanitarian action in a given country.Footnote 34 The Somalia HCT comprises UN agencies, donors, the Somali NGO ConsortiumFootnote 35 and a limited number of non-governmental organizations (NGOs), the latter being elected on a rotational basis.
HCTs are supported by the Inter-Cluster Coordination Group (ICCG). The ICCG provides coherence and plays a coordination role across the relevant sectoral areas, referred to as “clusters”, such as shelter, water and sanitation, protection, food security and nutrition.Footnote 36 Disability cuts across all of these clusters, with the level of priority given to the needs of persons with disabilities being particularly influenced by how and what information and evidence are gathered and analyzed.
Claiming participation through membership
OPDs could potentially be represented on the Somalia HCT, either through the Somali NGO Consortium or as one of the rotating NGOs. With respect to the latter, the Somalia HCT's membership structure is defined by terms of reference which, for NGOs, require an established operational presence and programming as well as demonstrated commitment to participation in humanitarian coordination. These terms of reference are challenging for OPDs, which tend to be staffed by volunteers and do not have financial and organizational stability, sophisticated systems for proposal writing, reporting and accountability, or broad-ranging delivery mechanisms. In addition, because persons with disabilities have historically been viewed as beneficiaries of charity, there is an added power dynamic when trying to integrate themselves into mainstream NGO networks. For example, it is telling that a powerfully written March 2022 open letter from fifty NGO actors appealing to donors to fund the drought emergency response does not include OPDs, although some of the included organizations may work on disability.Footnote 37 To help remedy this, the Somalia HCT's terms of reference could be amended to ensure that the voices of OPDs are enabled, either through the Somalia NGO Consortium or as a standing agenda item on a monthly or similar basis. This approach would be in line with the HCT's strategic nature and also with the Grand Bargain commitment to localization.Footnote 38 Localization was considered a priority at the World Humanitarian Summit and refers to the call for humanitarian actors to be more inclusive of local actors in all phases of humanitarian action. The localization agenda also commits the humanitarian system to diversity and has explicitly acknowledged that “persons with disabilities and OPDs have tended to be sidelined within humanitarian coordination and decision-making platforms, reinforcing underlying inequalities that obstruct access to humanitarian services”.Footnote 39
Donor representation on the HCT also provides an opportunity to advocate for better disability inclusion in its priority setting and funding criteria.Footnote 40 Inspiration could be drawn from the UN–Foreign, Commonwealth and Development Office (FCDO) performance review of the humanitarian system, a commitment from the Grand Bargain. Core funding support to seven UN humanitarian agencies was assessed on a set of requirements to improve effectiveness, coherence and collaboration in individual and collective humanitarian performance, referred to as “payment by results for agency budgets”. This incentive-driven approach means that Humanitarian Needs Overviews and Humanitarian Response Plans have to demonstrate that a certain “percentage” of the Response Plan is disability-inclusive; in 2020 this percentage was 70%, and in 2021 it was 75%. This process was accompanied by annual lessons-learned exercises for specific countries, including Somalia.Footnote 41 The exercise encouraged dialogue, helped raise awareness and provided practical examples of how disability can be included in the humanitarian architecture.Footnote 42 The criteria used could be extrapolated and adapted to country contexts such as Somalia. This would also support the implementation of Article 32 of the UNCRPD, under which States Parties have to mainstream disability inclusion in their international cooperation, including development assistance. While Article 32 could be narrowly construed as applying only to development contexts, this would be inconsistent with the UNCRPD's objective of promotion, protection and ensuring the full and equal enjoyment of rights by all persons with disabilities.Footnote 43 In addition, the protracted nature of many humanitarian crises means that development elements are intrinsic to the responses to those crises – for example, water management. In this regard, various aspects of disability inclusion, whether in an emergency setting or not, require development interventions, such as assistive technologies, which are rarely factored into a humanitarian response. Given this, the Article 32 commitment should also be factored into States Parties’ humanitarian portfolios and should be read in conjunction with Article 11Footnote 44 and Article 31, addressing data and statistics. In addition, the Organisation for Economic Cooperation and Development (OECD) Development Assistance Committee's “policy marker on the inclusion and empowerment of persons with disabilities” is a useful reference, providing guidance to relevant countries.Footnote 45
Making the invisible visible – prioritization
It is well documented that the lack of high-quality and comprehensive data available regarding persons with disabilities inhibits effective planning, budgeting and programme implementationFootnote 46 – or more simply put, “[i]f people with disabilities remain invisible in data, they remain unaccounted for”.Footnote 47 As humanitarian response is determined by needs,Footnote 48 it is essential that persons with disabilities are factored into that data collection and analysis. Efforts are under way to support this change, including through the Inter-Agency Standing Committee (IASC) Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action (Disability Inclusion Guidelines)Footnote 49 and monitoring.
In addition, the Accountability to Affected Populations initiative, which seeks to move from the notion of passive beneficiary of aid to someone who has agency, has a range of decision-making structures and processes that support community feedback, such as camp committees, disaster and risk coordination mechanisms, and hotlines.Footnote 50 The guiding principle is that consultation is not sufficient as it does not necessarily change an outcome; rather, a feedback loop system needs to be in place to ensure accountability. Given the power dynamics within communities, which are accordingly mirrored in community-based mechanisms, there is a need to invest in inclusion of persons with disabilities in these mechanisms, including through ensuring that they are accessible. This will support voices being better heard and ideally have a knock-on effect in addressing the relative invisibility in data collection and analysis exercises. Otherwise, crucial decisions will be made with what has been described as an ableist paradigm, meaning that persons with disabilities are excluded because there is a societal assumption that they have “less value than others” or because they are more broadly seen as beneficiaries who need care and are without agency.Footnote 51
At the cluster level, disability tends to be housed under the HCT's Protection Cluster, which historically happens to be the most underfunded.Footnote 52 Somalia follows this trend, and since the Somalia HCT's adoption of the Centrality of Protection Strategy in 2017,Footnote 53 one of the three consistent strategic objectives has been addressing exclusion.Footnote 54 The Somalia HCT has gone further with a push on mainstreaming across all clusters, supported initially by an OCHA disability inclusion adviser.Footnote 55 Given how critical data are, clusters were trained on the IASC Disability Inclusion Guidelines, data issues and overall disability inclusion principles, which resulted in strengthened Humanitarian Needs Overviews and Humanitarian Response Plans. The then disability inclusion adviser recommended a roadmap comprising key areas of intervention, many of which have been taken up.Footnote 56 For example, in 2021, using the Washington Group Questions Short Set (WGQ-SS) as a basis,Footnote 57 the Cluster Guidelines for Gathering Data on Disability were adopted.Footnote 58 This means that the thematic clusters now have a tool that helps them to integrate disability into data collection and reporting modalities, many of which become public. For 2022, the Somalia HCT has also volunteered to be part of a self-assessment pilot on disability inclusion in Humanitarian Needs Overviews and Humanitarian Response Plans as a way to galvanize thinking and increase understanding.
Nevertheless, application of the WGQ-SS is not without complications and experience suggests that its use is seen as not viable or too time-consuming in emergency responses. This naturally results in limited information being available about the needs of persons with disabilities, creating a risk that they will be left behind. As such, strong leadership is vital to ensure that disability inclusion is taken seriously, not only in the HCTs but also in individual UN agencies and NGO partners.
Specific considerations should be placed on how assessments are conducted, including the training of enumerators and who those enumerators are, as well as the basic operating assumption that most data are collected at the household level.Footnote 59 For example, if we take the food security sector, planning and response is driven through large-scale needs assessments or surveys.Footnote 60 Ideally, this is accompanied by qualitative tools such as community consultations which allow greater understanding to inform targeting decisions, prioritization and response. These assessments are the primary entry point for persons with disabilities to be brought into the humanitarian orbit. As such, certain considerations need to be kept in mind. First, community consultations are influenced by power dynamics, which are often more marked in conflict settings where access to populations is challenging. Persons with disabilities generally sit outside these power structures, and Somalia is no exception. Second, engagement is often remote; for example, assessments may be conducted over the phone, which excludes certain disabilities, usually those already more marginalized within the disability community, such as deaf people and persons with intellectual disabilities. To concretely help make the invisible visible, consultative and feedback processes should be designed to be accessible, with specific need considerations in mind – for example, ensuring that OPDs are brought into the design of such processes rather than relying on the broader community to identify who may be disabled, and training enumerators, community committeesFootnote 61 and monitors on accessible communication techniques. Humanitarian actors should also consider crafting solutions for long-standing and deep-rooted social and cultural biases and power imbalances. This could be done by moving beyond indicators such as age and gender, to factoring in marginalization as a ground in vulnerability assessments.Footnote 62
The development continuum
While these efforts can ensure better visibility of persons with disabilities in protracted humanitarian and conflict settings, this does not automatically translate into their full participation in a development context. It has been acknowledged globally that there is a need to shift the balance in crisis settings towards development for there to be sustainable progress. This need is more patent in protracted settings where humanitarian actors have expanded their remit. As has been noted elsewhere, this puts a strain on humanitarian funding and creates “a mismatch between humanitarian mandates and coordination structures and the long-term strategies needed to respond to protracted crises”.Footnote 63
The UN system has tried to address this through the concept of the humanitarian–development nexus, or, as in the case of Somalia, the humanitarian–development–peace triple nexus.Footnote 64 Given Somalia's dependence on humanitarian assistance, the nexus approach has been welcomed and “is generally seen to be a critical condition for maintaining what has been achieved in the past few years”.Footnote 65 The UN's efforts are also dependent on those entities funding the respective areas, which remains a challenge as governments generally divide development cooperation and humanitarian assistance portfolios, resulting in different management and accountability structures. The gap in coherence in Somalia – or as one external review on Somalia put it, the “siloed funding windows” in the countryFootnote 66 – has led to development partners being called on to “consider reorganising management structures, strategy and planning processes, and allocation decisions around regional, country or subnational geographic areas – rather than humanitarian, development and political functions”.Footnote 67 One external review noted that “[t]here is little in the way of a ‘nexus’ on the ground in Somalia” and found that the UN and other partners were not “ready to bridge the gap between their sectoral specialisations”.Footnote 68 The deep structural changes necessary in Somalia were exposed during the COVID-19 pandemic when humanitarian actors provided the bulk of health services in the country due to a weak public health system.Footnote 69
The UN's development architecture in Somalia is built around the UN Sustainable Development Cooperation Framework (UNSDCF). The UNSDCF is designed to support the government's development priorities, one of which is to strengthen the interface between humanitarian and development planning.Footnote 70 Conversely, the Somalia HCT's terms of reference recognize the need to support the humanitarian–development–peace nexus and to coordinate where possible with development platforms.Footnote 71 This mutual recognition provides leverage for an issue such as disability inclusion to be a thematic focus across the humanitarian–development continuum, keeping in mind the normative guidance as expressed by the Special Rapporteur on the Rights of Persons with Disabilities. She has emphasized that “[i]nclusive development cannot be effectively achieved in the absence of a human rights framework” and has called on States to “[e]nsure a human-rights based approach in the design, implementation and evaluation of all policies and programmes”.Footnote 72 This emphasis is highly relevant in the Somali context, where human rights, gender and inclusion are mainstreamed in both the government's National Development Plan and the UNSDCF, the latter aligning with the government's priorities. This necessarily means that issues such as disability rights and inclusion are, in principle, everywhere, but also risk being nowhere. As such, operationalization needs particular attention, and the minimum preconditions for inclusion, such as accessibility, support services and assistive devices, need to be in place.Footnote 73 The UN Disability Inclusion Strategy (UNDIS), issued by the UN Secretary-General in 2019, can also play an important role in this regard. The UNDIS places a heightened obligation on UN entities to demonstrate disability inclusion across the board, from organizational change and accessibility through to programming and projects.Footnote 74
The triple nexus – that is, the humanitarian–development–peace nexus – should, in principle, enable disability inclusion to be taken one step further. In other words, to arrive at sustainable peace, broad-based participation is vital, including through processes that support reconciliation, and State-building. The next section explores the concept of participation and what considerations need to be taken into account in Somalia for persons with disabilities to claim it.
Claiming participation
Ensuring disability inclusion is heavily dependent on how persons with disabilities and their representative organizations are enabled to participate.Footnote 75 Terms such as “engagement”, “consultation” and “participation” are used interchangeably in the context of disability, but all seek to respond to the systematic exclusion of persons with disabilities from decision-making processes that affect them. A research study commissioned by the European Union, entitled The Unsteady Path, unpacked these concepts, noting that “opening or creating participation space does not equate [to] meaningful participation, let alone effective changes for concerned population[s]”.Footnote 76 The research offers an analytical framework that is useful for the Somalia context. It warns that “participation can also be used to legitimize policies and processes that preserve [the] status quo or perpetuate inequalities”.Footnote 77 The framework looks at three elements: first, the State's role in facilitating participation; second, the disability movement's engagement; and third, the role and influence of international cooperation actors and service providers in the relationship between the State and the disability movement.Footnote 78 The ideal outcome of this set of relationships is that the State will be able to depend on a strong disability movement, which is in turn dependent on an engaged State that dedicates political space and resources to that movement. The capacity of both the State and the disability movement should be supported by international cooperation actors, who can also facilitate dialogue between them.Footnote 79
Conflict settings add another layer of complexity to State-building, development and reconciliation initiatives, particularly with respect to who gets to participate in those processes. Or otherwise stated, conflicts absorb political energy, and in the struggle for political consensus, many issues end up being left off the table.
Somalia's State-building process is anchored in a number of initiatives, including stabilization, reconciliation and constitutional review, all seeking to consolidate the State-building agenda. These initiatives already bring together two actors – that is, the State and the international community, and to some extent domestic civil society. Opening this space to the disability movement would help ensure its meaningful engagement in those critical processes and materialize a mutually reinforcing relationship between the State, persons with disabilities and international cooperation actors. Such inclusion would also help tackle societal stereotypes which can be partially summed up by the words of one Somali OPD representative, who stated: “persons with disabilities in Somalia are often not valued by society – they are frequently asked by their family, ‘what do you know?’”.Footnote 80 This level of stigmatization is of course a challenging starting point from which to claim participation. As part of its effort to address these challenges, the Somali government has acknowledged the necessity of moving towards the inclusion of persons with disabilities, including through the establishment of the NDA.
Coalescing around Somalia's National Disability Agency
The National Disability Agency was established in 2018, but officially launched by its five commissioners in 2021. It is a federal agency responsible for the design, development and implementation of the Somali government's plan for persons with disabilities, and it leads on legal reform in relation to disability.Footnote 81 A key objective of the NDA's Establishment Act was also to ensure that Somalis with disabilities have a body to represent them and advocate for their rights.Footnote 82
After the launch, the NDA immediately started its work with three main objectives: first, to raise awareness about the Agency and what it is mandated to do; second, to start its engagement with OPDs, with the aim of finding ways to help them have a voice and engage international community interest; and third, to influence the government system, planning and budget allocation. The latter is critical from a purely practical point of view as the NDA's financial support is limited to stipends to the commissioners, who are currently working out of homes or hotels. The Ministry of Women and Human Rights Development, which is already trying to find space for its own staff, has provided a small office, but the bathrooms are inaccessible, which means that it remains largely unused.Footnote 83
The NDA motivated a group of UN entities and the Camp Coordination and Camp Management Cluster and Protection Cluster to support it. A range of ideas were discussed, and it was eventually agreed that a country-wide survey which aimed to understand the perspectives and priorities of persons with disabilities would be the best entry point. The rationale was that the overarching goal was for the NDA to create a relationship of confidence and trust with OPDs that would evolve into a structured mechanism for consultation and joint advocacy. The launching of the survey would provide a platform for the NDA to discuss its mandate and engage with OPDs at the local level, including support in identifying community members and enumerators. In addition, it was agreed that the NDA was not in a position to undertake a typical needs assessment as it does not have the capacity to meet such needs or expectations; rather, by focusing on perspectives and priorities, the survey would be a tool to bring persons with disabilities and their representative organizations into a State–citizen dialogue. The survey's development was initially informed by a typical humanitarian needs assessment tool for internally displaced people with disabilities, based on the WGQ-SS and also including the WG-UNICEF Child Functioning Module.Footnote 84 The process of negotiating additional questions and removing others was fascinating, involving the NDA, OPDs, UN partners, clusters, the National Bureau of Statistics, and Trinity College Dublin.Footnote 85 It was recognized early on that there needed to be a development dimension that should be grounded in human rights, particularly in relation to claiming participation and accountability. The methodology was also crafted in such a way as to foster greater cross-sectional representation, increased participation by women with disabilities, increased inclusion of children with disabilities, and broader geographical coverage.
The survey was piloted in one regional capital in early 2022, and while it is too early to discuss the overall findings, the need to support participation claims clearly came across through the survey, most notably in responses to questions about representation of persons with disabilities. For example, 90% of persons with disabilities who took the survey stated that they had not been involved in community decision-making processes. Some 84% stated that they did not think that the rights of persons with disabilities are considered in political discussions. Interestingly, a lower number of persons with disabilities, 57.8%, felt that they were treated negatively or differently due to their disability status. Based on the responses, the next stage is to take a smaller subset of survey participants, both in key informant and focus group formats, and follow up with qualitative questions addressing participation.
Applying the analytical framework for participation discussed above, the NDA is moving steadily towards a situation where it, as a State entity, and OPDs are contributing to and collaborating on carving out a participation space. The following section outlines some recommendations on how that can be reinforced, especially at this nascent stage.
Conclusion and recommendations
In its current form, the typical humanitarian architecture, even where there is political will, has a limited ability to address the exclusion of people with disabilities and, more broadly, the rights of persons with disabilities. This is because it operates on a needs-based approach that serves beneficiaries as opposed to rights-holders – hence, it can inadvertently reinforce an already stigmatizing charity or welfare approach to persons with disabilities.Footnote 86 Furthermore, from the perspective of representation or having a role in the delivery of structured humanitarian action, few OPDs have the governance systems in place that could provide the breadth of services that are required to compete in a call for proposals for the different sectoral areas involved, such as water and sanitation, food security or shelter. Similarly, while the Accountability to Affected Populations framework has improved, it depends heavily on engagement with existing power structures and the set of identified beneficiaries. As persons with disabilities often sit outside these structures or are not reached in large-scale needs assessments, their voices are not always being captured. If this work is also taking place in a conflict setting, challenges are exacerbated due to the natural division of who is negotiating peace and who is awaiting those peace dividends. Nevertheless, as the Somalia example demonstrates, HCTs can do a lot with leadership, a willingness to leave agency branding behind, and an active committed partner such as the NDA. However, with system dependency on annualized funding, the Somalia HCT will not be able to fill the NDA's resource void, which needs more sustainable options.
On another note, as is evident from the nature of protracted humanitarian settings, humanitarian action does not operate in a hermetically sealed bubble; rather, it moves in and out of different spaces, particularly in a conflict setting.Footnote 87 In addition, frameworks for a different approach to action, such as the triple nexus, can also be harnessed. The following recommendations seek to identify some potential areas for further exploration.
Frameworks
• Humanitarian needs assessments, response plans and the like should pay more attention to indicators that define disability inclusion as an outcome, rather than simply being focused on outputs of the number of persons with disabilities reached.Footnote 88
• As has been stated elsewhere, the WGQ-SS was “not designed to be used in isolation”Footnote 89 and should be included in all relevant surveys, assessments and registration documentation to support disaggregation on the basis of disability across humanitarian, development and peace-related spheres, including political participation. Where possible, quantitative assessments should be supported by qualitative data exercises to strengthen understanding of marginalization dynamics.
• In this regard, using the WGQ-SS as a starting point, disability inclusion is an ideal thematic to test the potential value of the triple nexus. As described above, the humanitarian–development nexus is relatively straightforward, and the third element of peace can be partially addressed by supporting “claiming participation” initiatives; for example, as Somalia moves to universal suffrage, the government should ensure that the NDA has a place at the National Independent Electoral Commission's first national stakeholders' conference.Footnote 90 The NDA would have the responsibility of engaging and consulting effectively across the entire disability constituency – age, gender, type of disability and location – thereby transcending any historical identity claims.
• Strengthening disability inclusion will also depend on the extent to which the individuals whose rights are affected are willing to exercise and use their rights. Thus, the humanitarian apparatus needs to guarantee access to the disability community and embed its participation in it. This could take the form of ensuring representation in the HCT or Inter-Cluster Coordination Group, donor accountability using the Article 32 framework on mainstreaming disability into international cooperation, and through effective Accountability to Affected Populations initiatives. Given historical marginalization, capacity-building elements should also be included in support to OPDs.
• States Parties’ obligations under Article 32 could be better met through disability data disaggregation in humanitarian and development programming as well as drawing on initiatives similar to the UN–FCDO “payment by results” model.
• The UNCRPD Treaty Reporting Guidelines in relation to Article 11 could be strengthened to guide on the often “non-emergency nature” of humanitarian crises – that is, focusing on how disability inclusion can be addressed in protracted settings.
Partnerships
• Support national entities such as Somalia's NDA; this will help humanitarian actors to strengthen relationships with OPDs and demystify OPD engagement, thereby transforming the relationship from one of beneficiaries to one of rights-holders who have agency.
• Leverage the UNDIS, which includes an indicator on disability inclusion in programmes and projects, and engage with the UNDIS Secretariat, which has an extensive network, including in peace operation settings.
• Link national entities, such as the NDA, to the academic community. The Trinity College Dublin experience demonstrates that such entities could benefit from the latest methodological approaches and analytical experience, as well as lessons learned from other countries that such academic institutions work in or on.
• Ensure that disability data collected is linked to the work of the National Bureau of Statistics or equivalent in order to start building an archive of information and data to inform planning, programming and budgeting. This would also help raise awareness within national statistics bureaux on disability issues and ideally inform policy direction and analytical approaches to support system change.