‘A participation revolution’: creating genuine dialogue and partnerships between humanitarian actors and the disability movement

A ‘participation revolution’ was one of the key commitments coming out of the 2016 World Humanitarian Summit (WHS). Under the Grand Bargain, the most influential humanitarian donors, UN agencies and international NGOs, representing some 70% of humanitarian sector revenue, undertook to ‘include people receiving aid in making the decisions which affect their lives’. It was also a commitment to keep humanitarian action ‘as local as possible, as international as necessary’. But what do these commitments mean in practice? How do they translate into genuine participation, control and decision-making by all people with disabilities impacted by humanitarian crises, especially in the context of a worldwide pandemic? And what can be learned from work to mainstream gender equality within humanitarian aid?

Given that people with disabilities are one of the most under-served populations and the least included in humanitarian decision-making, significant change is undoubtedly needed. A wealth of reports from the disability movement on the impact of the coronavirus pandemic speak to the increased isolation, discrimination and exclusion that persons with disabilities face daily, especially women with disabilities and under-represented groups. There is major concern that the important gains the disability movement has made in developing and low-income countries are in jeopardy from both the direct and indirect impacts of Covid-19. If ever there was a time to reassess how to create more equitable, inclusive systems and achieve a participation revolution, it is arguably now, at this time of pandemic.

The outbreak of the Covid-19 pandemic and its subsequent spread to almost every corner of the world has, in a short space of time, up-ended traditional ways of working, unmasked systemic discrimination, destabilised economies and markets and deepened already entrenched inequalities. At the same time, what was considered impossible has almost overnight seemingly become possible: flexible home working; drastic reductions in national and international travel, with subsequent reductions in fossil fuel pollution; the largest increase in income safety nets and renewed discussions around an equitable universal basic income; and increased support for more local markets. These are all policies and practice that people with disabilities, the women’s movement and environmentalists have been advocating for decades: to develop more people-friendly, climate-friendly, inclusive and resilient ways of working.

A time for change

As the world heads into the most significant economic recession in decades, business as usual is no longer an option. Across the globe, households, local businesses, global conglomerates, municipalities and national governments are finding new ways of working; change is not only possible, but essential. However, many of the changes being implemented by governments are temporary, born out of necessity to meet short-term needs. They are not necessarily rights-based, and do not intentionally address longer-term policy commitments to promote participation and achieve systemic change and equality for all.

Even so, this time of change could open up significant opportunities for humanitarian agencies to seize the moment, using the Covid-19 response to help ensure more inclusive participation and engagement of people with disabilities and their representative organisations at all levels.

Over the past four years, since the WHS, there have been Important gains that have created a strong basis for longer-term, systemic change, not least the wide endorsement of the Charter for Inclusion of Persons with Disabilities in Humanitarian Action; the development of IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action; and UN Security Council Resolution 2475, to protect persons with disabilities in situations of conflict. Critically, all of these normative documents have demonstrated a substantive shift away from traditional medical and ableist paradigms that view persons with disabilities as vulnerable, homogenous recipients. In line with Committee on the Rights of Persons with Disabilities (CRPD) jurisprudence, they recognise persons with disabilities in their wide diversity, as active agents of change, as rights holders and as valued actors, with relevant lived experience to shape, monitor and hold humanitarian actors to account.

However, while this groundwork is important, these commitments still largely remain at a formal, international level. The degree to which they have filtered down to practice at field level is still negligible. For example, the fact that the Grand Bargain Annual Report of 2020 did not mention disability once speaks volumes to the challenges, including the low priority given to disability, low awareness and capacity, negligible investment and low levels of consultation with and participation of disability movements.

Compared to gender mainstreaming, disability inclusion, despite some recent progress, is still a long way from being properly understood and embedded as a legal and professional imperative by humanitarian actors. While it would be unthinkable for mainstream humanitarians to undertake gender analysis without consulting affected women and girls, or to not allocate specific resources to ensure that humanitarian action directly addresses and mitigates potential gender-based violence, equivalent steps for persons with disabilities are still not yet standard. This disparity is disappointing, but it also offers opportunities to learn from the gender movement.

Learning from the movement to mainstream gender

The development of the first IASC gender handbook in 2006, more recently updated in 2017, was an important turning-point in raising awareness of and capacity on gender mainstreaming. This was followed by the establishment of the IASC Gender Marker, initially piloted in 2009 and updated in 2018 to the Gender and Age Marker. This basic mandatory requirement for funding across humanitarian assistance has resulted in higher levels of reporting, with relevant data disaggregation across all humanitarian projects to increase accountability. While this still does not guarantee quality, or that standards are being met, it does ensure greater visibility and ability of local communities to hold humanitarian actors to account. In addition, this has led to increased resourcing of capacity and engagement of women-led organisations to help translate policies into practice and support locally led capacity development initiatives, and increased the number of women working in humanitarian agencies. This is still a work in progress in terms of including women in leadership positions, who are still not near parity with male counterparts. 1. Black, A., Henty, P. and Sutton, K., Women in humanitarian leadership, Deakin University, Humanitarian Advisory Group, 2017 (http://devpolicy.org/2017-Australasian-Aid-Conference/Papers/HAGWomeninLeadership_Final_email%20and%20web_120217.pdf).

These elements combined are supporting gender-responsive programming and increased investment in, ownership of and responsibility for gender equality as a core humanitarian responsibility. The same is now required for disability inclusion, for women, girls, men and boys with disabilities, recognising that most people with disabilities will have other characteristics that compound multiple discrimination, such as age, race, ethnicity, gender identity, faith and sexual orientation.

In many ways, the IASC gender handbook has laid a good foundation for the inclusion of disability in humanitarian response. It recognises disability as a critical inter-sectional discrimination that needs to be addressed, and which calls for, where possible, data disaggregation and analysis of programming on the grounds of disability. Unfortunately, the caveat – ‘where possible’ – in the handbook has often led to lack of engagement with women, girls and youth with disabilities. This has fed into a perception that disability inclusion is a separate or specialist issue, and one which is either too difficult to manage, or the responsibility of specialist agencies. This view further reinforces ableist attitudes and a medical approach that views persons with disability solely through the lens of health. Although there is wide recognition that persons with disabilities, of all gender identities, face much greater levels of abuse, violence and exploitation than their non-disabled peers, especially during crises and in displacement, mainstream agencies still do not automatically consider this as a core immediate responsibility. Hopefully, the recent IASC Guidelines on inclusion of persons with disabilities will provide practical support to equip mainstream actors on disability inclusion, as the gender handbook did on gender equality.

The more recent introduction of an OECD DAC disability marker, albeit not yet mandatory for official development assistance (ODA), could be another catalyst for change, as was the Gender Marker in its time. However, it is not clear that a separate marker for disability from the gender and age marker will be helpful. Will it support mainstream agencies to engage directly with disability movements to support disability inclusion, or will it only serve to further silo people with disabilities as the responsibility of specialist agencies?

Recognising the challenges

Much will depend on efforts to create inclusive spaces for participation. Currently, the majority of work to address disability inclusion has been through established formalised processes, such as rapid needs assessments, response plans and evaluations. These are all processes constrained by limited time and budgets, and as such are rarely conducive to open dialogue and reflection. This often results in humanitarian agencies taking short cuts, bypassing local Disabled Persons’ Organisations (DPOs) and consulting internationals from disability-specific agencies. Furthermore, although localisation efforts are improving partnerships with local agencies, formalised systems are still predominantly coordinated or managed by humanitarian surge teams, which often come to a disaster response with limited understanding of the complexities of local contexts, languages and cultural norms, much less the disability situation.

The shift to more localised responders, putting as much resource as possible into local national teams, will also not necessarily create a safe space for dialogue on issues of disability inclusion. Like their international counterparts, national responders do not always have an understanding of the complexity or diversity of local disability movements, much less trusted relationships with these groups. Furthermore, at times of crisis, what disability networks that do exist may equally have been disrupted by the crisis.

This therefore demands more forward thinking around how relationships can be nurtured between humanitarian, development and DRR practitioners and disability movements, including formal organisations of persons with disabilities, self-help groups and more ad hoc disability peer support networks. It also requires more coordinated approaches across mainstream and disability-specific agencies, local governments and UN agencies to jointly create space for disability movements to engage and lead on framing the issues that are the priority for people with disability during emergencies.

Creating the space for genuine dialogue

If we want a participation revolution, and want to open up more innovative dialogue that allows for meaningful participation, we need genuine spaces and opportunities, both formal and informal. This requires the creation of spaces where the traditional power dynamics of donor and recipient are upended. A potential space for this kind of dialogue is the formation of the third workstream on DPO engagement as part of the Reference Group to promote inclusion of persons with disabilities in humanitarian action. This workstream is developing a workplan, and there is an open invitation to all DPOs working in, or interested in working in, humanitarian crises to join humanitarian actors in taking forward the IASC Guidelines.

Effective participation requires, not just resourcing, making disability a mandatory marker and creating opportunities for engagement – but also creating genuinely safe learning environments. Much of the reluctance to engage with persons with disability stems from a fear of failure, of unwittingly doing harm. With so many taboos, stigma and deep layers of entrenched unconscious bias on all sides, it is hard to create trusted spaces for dialogue where risks can be taken and humanitarian practitioners and disability activists can open up, challenge each other’s views, share expertise and question often deep-seated bias. In order to create a critical mass in favour of inclusive humanitarian action, humanitarians need disability activists, just as disability activists need humanitarian partners. Creating the space where we can learn to work differently, especially during the current upheaval triggered by Covid-19, is critical, as is recognising that, while none of us has all the answers, together we are more likely to find good solutions.

A genuine participation revolution is still possible

Fourteen years after the adoption of the CRPD, it is time to build on the Grand Bargain commitment to realise a participation revolution that includes the disability movement as active partners with humanitarian actors. This will require us to overturn outdated mindsets, ways of working and ways of thinking. If we are to achieve localisation and genuine partnerships with local actors, those actors must include persons with disabilities and their representative organisations in all their diversity. The implementation of the IASC Guidelines, the Inclusion Charter, the Sendai Framework and the SDGs cannot succeed if we do not recognise and engage the rich diversity of the lived experience of persons with disabilities.

In answer to learning from the gender movement, efforts towards disability inclusion have to be much more open and inclusive, with the intent to work in a way that is inter-disciplinary and cross-sectoral, with all stakeholders. The great power of the disability movement lies in its diversity and its ability to make connections: their multiple identities as indigenous people, youth and women, as ethnic minorities, farmers, union members, faith leaders and much more. This depth of experience and connectedness to wider local, regional and global constituents should allow for a more inclusive integrated approach that no longer looks at issues in isolation.

Useful further references

For a good analysis of current funding of international aid targeting disability see Development Initiatives June 2020 report, Disability-inclusive ODA: aid data on donors, channels, recipients

For clear rights based approach to Covid-19 response see Toward a Disability-inclusive Covid-19 response: 10 recommendations from the International Disability Alliance

For a good example of research undertaken by DPOs on the impact of COVID on their membership see the World Blind Union: Amplifying our voices: our lives, our say

For a good analysis of how Covid-19 has exacerbated inequalities see Save the Children’s global report: Protect a generation: the impact of Covid-19 on children’s lives

For clear recommendations on how to build more inclusive and equitable responses see the Cities for All Learning Series Equity and access in times of pandemic

If you would like to engage in the third workstream of the Reference Group to take forward DPO engagement to promote opportunities for inclusion of persons with disabilities in humanitarian action please register or email rg.disabilityinclusion@gmail.com.

Kathy Al Jubeh is Senior Advisor Inclusive Development – Capacity Development Lead at CBM Global and co-chair of workstream 3 of the IASC Reference Group. Alradi Abdalla coordinates the Training of Trainers programme of the Bridge CRPD SDGs initiative.