In crisis settings persons with disabilities are more likely to lose their lives and livelihoods than people without disabilities.+1. Katsunori Fujii, ‘The Great East Japan Earthquake and disabled pesons’. Japan: Disability Information Resources. This is due, in part, to the policies and practices of humanitarian actors, where a focus on a blanket approach can exclude persons with disabilities from assistance and protection.
No longer seen as the domain of specialist agencies, a wide variety of development and humanitarian agencies have committed to improving disability inclusion. At the 2018 Global Disability Summit (GDS), Islamic Relief Worldwide, along with dozens of other state and non-state actors, made a series of commitments to tackle critical issues such as exclusion from education, livelihoods, stigma and discrimination and engaging with organisations of persons with disabilities (OPDs)+2. See https://www.internationaldisabilityalliance.org/commitments.
In 2020, Islamic Relief carried out an internal review to assess progress towards these commitments and document positive and challenging practices on disability-inclusive programming to identify opportunities for learning. Conducted with limited resources and based mostly on secondary data, project documentation and key informant interviews with representatives from across the IR Family, this was not a rigorous assessment of Islamic Relief’s capacity and performance in relation to disability inclusion. Rather, the review represents a light-touch stocktake, focusing on eight areas with the most practical implications for IR programming. (The review did not cover other organisational functions, such as human resources or governance, which have a strong impact on inclusive programming.)
In recent years, Islamic Relief has sought to improve its performance in relation to disability inclusion, alongside other cross-cutting issues such as safeguarding, gender justice, child protection and conflict sensitivity, through an integrated approach to mainstreaming protection and inclusion in programmes. Building on momentum generated by investment in technical capacity through the DFID-funded Age and Disability Capacity Programme (ADCAP) (2016–18) and then through two thematic projects supported by the Swedish International Development Cooperation Agency (SIDA), IR has developed human resource capacity in the form of protection and inclusion Officers/Coordinators in about a dozen country offices.
Islamic Relief Worldwide (IRW) also developed an operational framework on Protection & Inclusion (P&I). The framework has six elements:+3. Bhardwaj, R., Leave no one behind in humanitarian programming: an approach to understanding intersectional programming, Islamic Relief Worldwide, November 2018. intersectional analysis (based on data disaggregation on age, gender and diversity), attention to negative effects, adapted assistance, adequate participation, accountability and adequate capacity. This framework, which is based on the principle of Do No Harm and key elements of protection mainstreaming, provides a link between IR’s protection-specific policies+4. For example, the Safeguarding Policy (2018), the Gender Justice Policy (2016) and the Child Protection Policy (2015). and the programming standards of the IHSAN accountability framework,+5. The IHSAN accountability framework is an internal tool based on CHS and other widely used accountability tools. which is itself based on the industry-wide Core Humanitarian Standard.
The findings of the review will provide the basis for Islamic Relief’s future efforts to improve its policies and practices relating to disability inclusion in humanitarian and development programming. This article presents some of the review findings in relation to IR’s commitments to disability inclusion, namely: collaborating with OPDs for programming and capacity-building; tackling disability-related stigma and discrimination; and the intersection of gender and disability.
Collaborating with OPDs for programming and capacity-building
Engagement with OPDs is a critical component of effective and inclusive programming. However, the review found that, at a Country Office level, OPD engagement varied, from limited (for example targeting of persons with disabilities for seasonal distributions) to some very significant engagement. For example, in 2020 IR Niger coordinated with the national OPD federation to identify over 1,000 persons with disabilities to receive Ramadan packages.
The most notable engagement with OPDs has taken place in Chechnya, Palestine/Gaza and Bangladesh. IR Russia has partnered with OPDs since 2012, when it began a series of projects with the Chechen Union of Hearing Impaired People to establish a Development Centre for Hearing Impaired in Grozny to provide access to free training services and opportunities to study Islam. IR Palestine/Gaza has collaborated with the local OPD network (with support from the INGO Humanity & Inclusion) to conduct accessibility audits of venues for community-based activities. It has also involved OPD representatives in the baseline assessment for a recently initiated project on education and in the design of their current cash for work project. This engagement ensured that IR Palestine achieved a more complete understanding of the barriers facing persons with disabilities in accessing education and employment, and the accommodations required to ensure their inclusion.
IR Bangladesh has been supported by Humanity & Inclusion to make connections with local OPDs in Rangpur and Dhaka to support the inclusion of persons with disabilities in a number of livelihood projects. The OPDs provide orientation sessions for adults with disabilities to help them understand IR’s livelihood support and identify potential participants. IR Bangladesh is now planning further projects in collaboration with OPDs and Humanity & Inclusion.
At a global level, IRW is building and strengthening relationships with IDA and Inclusion International to map out and identify areas of mutual interest for collaboration focusing on mainstreaming disability in all efforts towards localisation, in accordance with the Grand Bargain and in response to both ethical and practical drivers, underlined by the Covid-19 global pandemic.
Tackling disability-related stigma and discrimination
There is significant evidence to show that the negative attitudes and misconceptions of family members, neighbours, community leaders, service providers and staff represent the most significant barriers to inclusion of persons with disabilities in humanitarian programming+6. DFID, Disability inclusive approaches to humanitarian programming: summary of available evidence on barriers and what works, 2019 (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/833579/query-9-evidence-humanitarian-response1.pdf).. However, the disability review showed that, of all its commitments to the Global Disability Summit, Islamic Relief has acknowledged that disability stigma and discrimination is one of the major challenges it needs to address through its programmes. Some country offices undertake ad hoc activities, for example integrating messages relating to disability inclusion in orientation sessions for protection committees (IR Niger, IR Malawi) or holding events and producing videos for the annual International Day of Persons with Disabilities (IR Palestine, IR Pakistan).
Disability-related stigma affects IR staff, as well as the communities we serve. Persons with disabilities are often perceived as intrinsically ‘vulnerable’, requiring handouts or specialised health services. Even when disability inclusion is internalised as part of Islamic Relief’s mandate, progress is limited by an overly generalised approach which has yet to deliver the specific measures required to remove attitudinal, physical and institutional barriers, and ensure dignity, autonomy and accessibility for persons with disabilities.
To fully engage staff, overcome negative perceptions relating to disability and build confidence around inclusion, IR realised that it is necessary to conduct a consultative and participatory process to develop its own internal policy. Currently, IR is exploring ways to ensure that the policy articulates an Islamic perspective on disability inclusion as a foundation for a faith-sensitive approach to disability mainstreaming, within Islamic Relief and beyond. IR is aiming to finalise a policy that is grounded in the values of the organisation and linked to the frames of reference to which staff are accustomed (Islamic perspectives, faith-sensitive approach, global strategy, CHS). The policy would provide a firm foundation from which to generate further organisational change and to translate policy commitments into systematic practice, such as developing a faith-sensitive approach to promoting the rights of persons with disabilities in humanitarian and development programming (with a focus on combating stigma and discrimination).
Faith and faith-based institutions are very often a source of hope, empowerment and resilience for crisis-affected communities+7. Lutheran World Federation and Islamic Relief Worldwide, A faith-sensitive approach in humanitarian response: guidance on mental health and psychosocial programming, 2018 (https://interagencystandingcommittee.org/mental-health-and-psychosocial-support-emergency-settings/documents-public/faith-sensitive-approach).. However, in many traditional societies religious beliefs are also a source of stigma, discrimination and prejudice, which lies at the root of social exclusion, diminishing resilience and exacerbating crisis-related protection risks, particularly for people with disabilities+8. IDA, DFID and Government of Kenya, Global Disability Summit – Dignity and Respect for All: creating new norms, tackling stigma and ensuring non-discrimination, 2018 (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/726179/DFIDHandouts_Dignity_Respect_V6.pdf).. ‘Disability is often blamed on: misdeeds of ancestors; misdeeds of parents; misdeeds of the person with disabilities; supernatural forces such as demons/spirits; witchcraft; or punishment or fate from God’+9. Rohwerder, B., Disability stigma in developing countries. Brighton: IDS, 2018 (https://assets.publishing.service.gov.uk/media/5b18fe3240f0b634aec30791/Disability_stigma_in_developing_countries.pdf)..
Even the most detailed guidance on inclusion of persons with disabilities in humanitarian action, such as the 2019 IASC Guidelines and the 2018 Humanitarian Inclusion Standards, provides only cursory instructions to address stigma through engagement with faith leaders. And the evidence is scant on the role of faith leaders in community-based approaches to tackling disability-related stigma and discrimination, or the value of prayer and religious contemplation to the mental health wellbeing of persons with disabilities.
Humanitarian actors do not have the knowledge or tools to respond to the relationship between faith and the protection of persons with disabilities in crisis settings, either to leverage the positive aspects or to mitigate the negative ones.
Responding to the intersection of gender and disability
In its commitment to intersectionality, Islamic Relief recognises that it cannot deliver disability-inclusive programming without understanding and responding to the different situations of women, men, girls and boys with disabilities, affected as they are by multiple and compounding discrimination on the grounds of both their gender and disability. This is reflected in the prominent position of intersectional analysis and disaggregated data as key pillars of IR’s Protection & Inclusion framework.
The Gender Mapping Audit 2020 highlights the need to strengthen work on gender and disability:
- Age, gender and diversity analysis should also consider barriers to participation and meaningful access.
- Gender justice in humanitarian and development settings must be rooted in meaningful participation of women and girls in decision-making, including women and girls with disabilities, and in support of local women-focused CSOs, including organisations of women with disabilities.
- Setting targets disaggregated by sex, age and disability will strengthen accountability and encourage better data to inform more inclusive and protection-sensitive programming.
- Addressing the gendered needs of women and girls with disabilities requires a twin-track approach to inclusion+10. This is consistent with the formulation in the new IASC Guidelines on inclusion of persons with disabilities in humanitarian action (https://interagencystandingcommittee.org/iasc-task-team-inclusion-persons-disabilities-humanitarian-action/documents/iasc-guidelines). combining the following components:
- Mainstream programmes and interventions designed for the whole population, which are inclusive of women and girls with disabilities (in terms of both access and participation).
- Targeted programmes and interventions which address the specific risks and requirements of women and girls with disabilities (in terms of both needs and empowerment).
No humanitarian agency can claim to have fully adopted an intersectional approach to protection and inclusion. It is a challenge to break down the walls between the thematic or demographic siloes into which technical and programmatic teams are organised. With finite resources and an expanding list of cross-cutting issues, it is tempting to try to prioritise and give prominence to certain demographics over others. However, intersectionality requires that we take a more nuanced approach based on multi-dimensional protection risk analysis and integrated multi-sector responses implemented in partnership with multiple stakeholders representing the diversity of the populations we serve.
The review found that actions are required to accelerate progress across all nine focus areas/commitments on disability inclusion. However, it is also important to recognise where progress has been made, particularly in relation to engagement with OPDs, accessible infrastructure, inclusive livelihoods and targeted programming.
As a theme cutting across not just programmes, but all organisational domains, disability inclusion is subject to many of the same institutional challenges which limit progress in other areas, such as gender justice, localisation, sustainability, safeguarding and systems-level impact. These challenges are the result of tension between valued aspects of IR’s identity (e.g. fast response, direct implementation, large scale, high visibility for private donors, engagement with local leaders) and the drive to increase IR’s impact through long-term, evidence-based programmes which meet technical standards and respond to the changing role of INGOs by transferring power to communities through localisation and meaningful participation.
These challenges have limited IR’s progress towards meeting its commitments to disability-inclusive programming. IR should consider working with OPDs in humanitarian action. There are clear guidelines and examples to follow, but greater OPD engagement will necessitate mobilising resources for capacity-building of local organisations and a shift to a robust partnership model.
Improvements in disability data will require reducing reliance on community leaders as key informants and increasing primary data collection, using methodologies that take account of the low visibility of persons with disabilities. The availability of external tools and training on disability data and ongoing development of internal digital data management systems will help facilitate this. The momentum provided by high-level prioritisation of complaints mechanisms to improve safeguarding can be an opportunity to improve informal feedback processes as well.
Finally, IR realises that inclusion and rigour of analysis and accountability will be boosted by recent progress to improve project cycle management tools and processes. Resourcing should not be an excuse as donors expect project budgets to include costs relating to inclusive MEAL as well as accessibility and reasonable accommodations. Change will also require nurturing a working culture that encourages staff to learn from failure, reflect critically and apply their creativity.
This article is based on a review of disability inclusion in Islamic Relief programmes drafted by Tom Palmer and finalised by Sherin Alsheikh Ahmed.