‘He who lives in the attic knows where the roof leaks’: lessons from a disability audit in north-east Nigeria

Despite the humanitarian principle of impartiality, by which assistance is meant to be provided based on need, much humanitarian support still does not reach those worst affected by crises. The needs and capacities of people with disabilities and older people continue to be systematically overlooked by the humanitarian system, with low levels of awareness and limited capacity among humanitarian actors and inadequate action plans or budgetary allocations by implementing agencies.

Recognising this, the UK Department for International Development (DFID) commissioned CBM and Nigeria’s Joint Association of Persons with Disabilities (JONAPWD) to carry out an audit of four humanitarian projects funded through the five-year North East Nigeria Transition to Development (NENTAD) programme, designed to support the transition from humanitarian aid to early recovery programming 1. More details of this DFID-funded humanitarian response programme can be found at https://devtracker.fcdo.gov.uk/projects/GB-GOV-1-300432. . As such, the programme offers a particularly interesting angle through which to explore the barriers preventing people with disabilities from being included in and benefiting from responses in a post-humanitarian setting.

Using the lens of the recently published Humanitarian Inclusion Standards (HIS), developed by the Age and Disability Capacity Programme (ADCAP) in 2018, 2. The Standards seek to address gaps in understanding the needs, capacities and rights of older people and persons with disabilities, and to promote their inclusion in humanitarian action at all stages of the project cycle. For more details see: https://www.helpage.org/what-we-do/emergencies/adcap-age-and-disability-capacitybuilding-programme/. the review sought to assess the extent to which people with disabilities and older people were systematically and consistently included in the response provided by DFID’s NENTAD partners. The findings and subsequent recommendations were published in three documents: a partner-focused report with organisation-specific recommendations which implementing partners could use to develop workplans with CBM support; an anonymised report with summary findings relevant for all humanitarian actors in Nigeria; and a policy brief for use by all humanitarian actors seeking to provide a more inclusive response.

Frameworks for inclusive humanitarian response

The UN Convention on the Rights of Persons with Disabilities (UNCRPD), the Sendai Framework for Disaster Risk Reduction 2015–2030 and the Humanitarian Disability Charter provide a clear legal and policy framework underpinning the commitment of the humanitarian community to include persons with disabilities and older people. Articles 11 and 32 of the UNCRPD 3. See for instance International agreement on the rights of disabled people (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/.attachment_data/file/345108/easy-read-un-convention.pdf) and Handbook on the human rights of persons with disabilities, July 2010 (HI) (https://www.internationaldisabilityalliance.org/UnderstandingtheCRPDHandbook). require that persons with disabilities benefit from and participate in disaster relief, emergency response and disaster risk reduction strategies. The Sendai Framework 4. The Sendai Declaration is here: https://www.unisdr.org/files/43300_sendaideclaration.pdf. The Framework has seven targets and four priorities for action. It was endorsed by the UN General Assembly following the 2015 Third UN World Conference on Disaster Risk Reduction. reinforces the message that disability inclusion is crucial in all phases of humanitarian response, including disaster risk reduction – preparedness, prevention and mitigation – along with disaster relief, rehabilitation and recovery. In addition, it uses disability-inclusive language and introduces the principle of an inclusive ‘Build Back Better’ approach, which uses the reconstruction and recovery period as an opportunity to address and rectify vulnerabilities and exclusions in communities. The Charter on Inclusion of Persons with Disabilities in Humanitarian Action 5. The Humanitarian Disability Charter is available at: https://humanitariandisabilitycharter.org/ commits to ensuring non-discrimination, fostering participation, developing inclusive policies and guidelines, developing inclusive responses and services and improving cooperation and coordination. Yet despite these overarching frameworks, there is often little clarity on how to develop inclusive policies, systems and processes, and a subsequent lack of practical application.

Nigerian context

In Nigeria, disability is not seen as a human rights issue but viewed in terms of charity and welfare. 6. See the full report commissioned by DFID in 2008 and realised by the Leonard Cheshire Disability and Inclusive Development Centre with the support of JONAPWD: Scoping study: disability issues in Nigeria (https://studylib.net/doc/13390397/scoping-study–disability-issues-in-nigeria-final-report). As in many African societies, the traditional response to social care needs, where care is provided by family and (social or religious) community members, is being challenged by rapid and profound social change. The government is struggling to fill the gap, and limited resources, inadequate management and a lack of legislation mean that social care provision is not available to persons with disabilities. There is also a high degree of exclusion and stigma associated with disability, 7. E. Etieyibo and O. Omiegbe, ‘Religion, culture, and discrimination against persons with disabilities in Nigeria’ African Journal of Disability 5(1), 2016 (https://ajod.org/index.php/ajod/article/view/192). with charity and medical approaches to disability still highly prevalent at all levels of society.

The exclusion of persons with disabilities is further exacerbated by a complex humanitarian context and insecurity in the north-east, which has been the scene of hostilities between military forces and non-governmental groups since 2009. The international humanitarian response has been slow; the large-scale response now in place dates from late 2015. Security has often overshadowed other considerations for implementing agencies, diverting time and attention away from developing inclusive practices more widely.

Findings of the review

DFID is committed to ensuring that humanitarian action leaves no one behind and is fully inclusive, as described in the fourth pillar of its disability inclusion strategy 8. As well as the DFID strategy on disability inclusion (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/760997/Disability-Inclusion-Strategy.pdf), the NENTAD Business Case mentions two commitments on disability. See also DFID’s Humanitarian guidance note: ageing and disability in humanitarian response of November 2015 (https://inclusion-international.org/wp-content/uploads/2015/11/DFID-Humanitarian-Guidance-Note-Ageing-and-Disability-in-Humanitarian-Response-copy.pdf). . However, the findings of the NENTAD review make it clear that more action is urgently needed. Additional funding and capacity, the development and implementation of organisational policies and advance preparation are all vital to assist frontline actors and communities affected by armed conflict, disasters and other humanitarian emergencies to coordinate, plan, implement, monitor and evaluate essential actions for disability inclusion across all sectors of humanitarian response.

Despite genuine openness to inclusion on the part of NENTAD partners, basic understanding of inclusion is often lacking, and misconceived and negative assumptions around disability are common among humanitarian actors. This is compounded by high staff turnover, particularly related to temporary emergency surge deployments. In north-east Nigeria, where none of the humanitarian organisations operating today was present prior to the outbreak of the current crisis, mainstream organisations often struggle to find disability expertise at field level. Most staff have had little exposure to humanitarian principles, disability inclusion or the international policies described above. There is an urgent need for capacity-building, developing knowledge and understanding on disability issues among staff in mainstream humanitarian organisations, communities, service staff and government workers. Preparedness is essential, which means investing in the capacities of humanitarian staff and organisations representing of persons with disabilities before a crisis occurs.

This may require donors to support technical advisory resources within implementing partners and their own country offices, with responsibility for cross-cutting issues such as disability inclusion. This function may be funded through a combination of core funding and cross-charging across multiple projects. In addition, after a period of some agencies investing heavily in developing policies and tools on inclusion, it is critical to invest equally in the promotion and dissemination of these tools so that they are embraced by all staff, including senior leadership.

The cluster system and key humanitarian coordination agencies should be engaging with specialist local and international agencies in their responses. In north-east Nigeria there has been very limited attention paid to disability inclusion across the humanitarian clusters, and there is a need for opportunities for humanitarian stakeholders to share challenges and good practice. This participation could be organised through regular liaison with organisations of people with disabilities (OPDs). Strengthening collaboration between mainstream INGOs and disability-specific agencies, as well as OPDs, could bring a mutual learning exchange and contribute to more effective and inclusive aid delivery.

Women and men with diverse disabilities should be active participants in the humanitarian response, including opportunities to assume leadership roles, as they understand the context, can identify their needs and know their own capacities – ‘He who lives in the attic knows where the roof leaks’ 9. Nigerian proverb. . However, most OPD members do not have experience of working with INGOs in humanitarian contexts, and may not be confident interacting and engaging with them, leading to misunderstandings and making cooperation uncertain and complicated. Current initiatives to strengthen OPDs do not go far enough, and have not equipped their members with the required skills for taking up leadership roles in humanitarian response. The Bridge Training Module on Article 11 of the CRPD (see pp. 13– 16 of this edition) 10. For more information about the BRIDGE training see IDA’s website: https://www.internationaldisabilityalliance.org/bridge-art-11-global-training-call. is a step towards addressing this gap. Humanitarian coordination agencies should consider working with the International Disability Alliance (IDA) and the International Disability and Development Consortium (IDDC) to ensure that this training, or similar, continues to build the skills and confidence of participants with disabilities to ensure that their voices are heard in decision-making.

Data collection, particularly disaggregated data on gender, age and disability, has the potential to identify adaptations and address barriers that could exclude persons with disabilities, as well as identifying intersectionalities that might lead to double discrimination. Implementing partners need support to ensure disaggregated data is not only generated but also used in an appropriate and robust way. The ground is currently incredibly fertile for DFID and other donors to provide practical, context- specific technical support to partner organisations. Partners have made some progress in this area, but need further guidance. The appointment of dedicated Humanitarian and Development Disability Advisors within donor country offices would be a very valuable step in providing technical support, which could focus on networking to share learning experiences, translating Washington Group Questions 11. See https://www.washingtongroup-disability.com into local languages and forming links with organisations experienced in the area.

A twin-track approach to disability inclusion removes the barriers that prevent the full participation of persons with disabilities in mainstream humanitarian programmes at the same time as addressing their immediate, specific needs (such as replacing assistive devices or the provision of specific medical services). Donors applying the twin-track approach need to build inclusion considerations into funding mechanisms to ensure a disability-inclusive approach to budgeting. This supplements mainstream humanitarian funding with a complementary disability pool fund for empowerment work and capacity-building with OPDs, plus cross-cutting adaptations and accessibility measures to ensure equal access to the response. This could be articulated in the Humanitarian Response Plan (HRP).

Building on recent positive policy developments in Nigeria, such as the signing into law of the Discrimination Against Persons with Disabilities (Prohibition) Act 2018, there are opportunities to change attitudes, reduce stigma and raise awareness of the rights of people with disabilities. The review revealed that stigma and exclusion remain a common experience for people with disabilities, and this is reinforced during conflict and emergencies. It is not only the attitudes of family members, caregivers and members of the community that may contribute to the marginalisation of persons with disabilities, but also the attitudes of humanitarian workers, staff in public services such as schools and health centres, as well as policy-makers and grant allocators in government departments. NENTAD partners have implemented awareness-raising programmes with public sector workers and advocacy initiatives seeking to change infrastructure. By showing good examples of inclusion, local partner staff can build awareness among decision-makers and civil servants regarding inclusive approaches, including the need for accessible public spaces.

Humanitarian response cannot achieve its purpose of providing assistance and protection to all people according to need, and without discrimination, if it continues to exclude the needs and capacities of some of the most vulnerable and marginalised people in the world 12. The IASC Guidelines on inclusion of persons with disabilities in humanitarian action (2019) outline actions that humanitarian actors must take in order to respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. See https://interagencystandingcommittee.org/system/files/2019-11/IASC%20Guidelines%20on%20the%20Inclusion%20of%20Persons%20with%20Disabilities%20in%20Humanitarian%20Action%2C%202019.pdf . The north-east Nigeria example shows that each key stakeholder in the humanitarian community – donors, implementing agencies, coordination bodies and government agencies – has a vital part to play, but that this must be in partnership with persons with disabilities and their organisations. Working together can make humanitarian assistance inclusive and accessible, and as a result impartial and effective. Investing in disability inclusion ahead of time helps address the challenge of limited capacity and knowledge, the lack of policies and structures and inadequate financial architecture prior to a crisis.