Including persons with disabilities in emergency responses is a shared responsibility of all humanitarian actors
By Vivian Alt
As discussed in the first article of this series, persons with disabilities have been overwhelmingly excluded from humanitarian aid in different crises worldwide. In general, services provided by governments and NGOs are not accessible to these individuals, increasing their vulnerabilities during emergency responses.
Activists and NGOs have, however, been trying to change this scenario. Actors such as International Disability Alliance (IDA), International Disability and Development Consortium (IDDC), Humanity & Inclusion, Christian Blind Mission (CBM), HelpAge International, Light for the World, Sightsavers have been leading an international movement to guarantee that the needs of persons with disabilities are met during humanitarian crises. This article will, hence, contextualise such movement, and its challenges to promote sustainable change towards inclusion.
Historically, international agreements and frameworks related to humanitarian crises (such as the International Humanitarian Law) , the Hygo Framework for Action, the Millennium Development Goals, the SPHERE Project, among others) have not directly mentioned persons with disabilities or have only addressed them as part of the broader category of “vulnerable groups”. Therefore, these documents failed to promote real inclusion of persons with different types of impairments.
The past few years have, however, brought an exciting change to this scenario. In 2006, the disability movement achieved an remarkable milestone with the elaboration of the Convention on the Rights of Persons with Disabilities (CRPD), which laid the ground for future agreements and frameworks to directly mention persons with disabilities. These “new wave” of documents include: the Sendai Framework for Disaster Risk Reduction (the Hyogo Framework’s successor), the Sustainable Development Goals (the successor of the MDGs), and the Core Humanitarian Standards (the Project SPHERE’s successor).
Although none of these documents address disability issues in their primary goals, they are significantly better than their predecessors. For instance, all three have set specific secondary targets related to the topic, including important points such as the need to collect disaggregated data by disability and to ensure the involvement of persons with disabilities in decision-making mechanisms.
During the 2016’s World Humanitarian Summit, another crucial document was launched: the Charter on Inclusion of Persons with Disabilities in Humanitarian Action. Since then, the Charter has been endorsed by over 170 governments, UN agencies, international and national NGOs and associations, the Red Cross and Crescent Movement and the Disabled People’s Organisations (DPOs). Despite not being legally binding, the document laid the foundation for more concrete actions – e.g. the setup of a special Working Group within the scope of the InterAgency Standing Committee (IASC). It has also made a remarkable progress in increasing funds from large international donors for inclusive projects in emergencies.
The promotion of inclusion in humanitarian action has gained considerable momentum. In this sense, interest on the topic has significantly increased among all humanitarian actors, not only those dealing specifically with persons with disabilities. Subsequently, attention has been drawn to two important causes of exclusion mentioned in the first article of this series: collecting disability disaggregated data and involving persons with disabilities in decision making mechanisms. Therefore, taking advantage of this favourable atmosphere can be paramount to bringing inclusion into the field level.
The three main causes of exclusion of persons with disabilities (discussed previously in this series) are key into comprehending the major obstacles to operationalise inclusive policies, frameworks and guidelines in the field, especially in complex emergencies.
Absence of data: according to agencies managing refugee camps, the official number of registered persons with disabilities is far below WHO’s estimation of disability prevalence within the global population. Thus, these individuals’ special needs go unidentified and unaddressed by the actors providing humanitarian aid, exacerbating their situation of vulnerability.
In 2016, UNHCR and Handicap International conducted a small survey in a Syrian refugee camp in Jordan in order to better understand the gaps in registration methods. The survey interviewed 100 individuals using an alternative data collection method, called the Washington Group Short Set of Questions. In this procedure, the respondents are not directly asked if they have a disability – as opposed to UNHCR’s methodology. The survey found that using UNHCR’s questionnaires, the disability prevalence rate was of only 2 percent. On the other hand, with the Washington Group questions the rate increased to 27 percent.
These results indicate how crucial it is to update or adapt existing methods of data collection to identify persons with disabilities within affected populations. A relevant step towards the right direction would be the adoption of the Washington Group Questions or WHO’s Model Disability Survey by UN agencies (especially the UNHCR) and NGOs. Humanitarian actors should also consider adapting their tools for needs assessment, as well as case management, monitoring, and evaluation. Similarly, donors should encourage the organisations applying for funding to reformulate their methodology.
Involving persons with disabilities: “Nothing for us, without us” became one of the mottos used by the disability movement to shed light on the fact that most inclusion policies, projects or guidelines are developed without the participation of persons with disabilities. In this context, one must note that people have different types of impairments, therefore, they need specific treatment to their conditions. In addition, disability related stigma varies according to countries and cultures. Thus, it is crucial that persons with different disabilities are part of the planning, the implementation and the monitoring of different projects.
Humanitarian actors should ensure, for instance, that specific consultation meetings are held with persons with disabilities for the planning, implementation or evaluation stages of a given project. Similarly, an ad hoc group or committee with frequent meetings can be set up to support, monitor and ensure that all activities of an organisation are inclusive. These groups or meetings should be established within organisations, UN agencies, and donors. The latter should also be responsible for ensuring that organisations applying for funding guarantee the participation of persons with disabilities in different phases of the project cycle.
Inclusion experts: In May 2017, an event in Iraq discussed a paper documenting the progress and the shortcomings of the Charter on Inclusion, one year after its launch. In the occasion, different actors debated the difficulties to include persons with disabilities in such a complex humanitarian response. One of the most cited obstacle by mainstream organisations was the lack of technical expertise in inclusion in their teams.
With this in mind, mainstream organisations (including UN agencies) should ensure that experts on inclusion are either recruited on a consultancy basis or become permanent members of their staff. These specialists would be responsible for providing technical support prior to, during and after implementing different projects to guarantee that services are provided respecting the international standards of accessibility and inclusion. This type of support would be similar to, for instance, when a gender expert is recruited for a child protection project to ensure that girls will not be left out. The inclusion expert in this case would make sure that boys and girls with disabilities are not excluded from the activities planned.
The current international environment favours positive and sustainable changes. The next step in promoting inclusion is to operationalise international agreements, considering the three main recommendations discussed above. One must also understand that disability is an evolving concept and that humanitarian crises are often changing. Thus, constant debate is crucial to address new challenges.
Although it is important to ensure that specific activities (such as rehabilitation) are part of an emergency response, the concept of Inclusion means that everyone has equal and dignified access to all services provided. Henceforth, in addition to projects targeting specifically persons with disabilities (as the one mentioned above), it is imperative to ensure that education, protection, WASH, shelter etc. projects are inclusive. Access to humanitarian assistance is a fundamental human right for all and, therefore, guaranteeing it is a responsibility of all humanitarian actors.
 Mainstream organisations are defined here as those working in different projects, without a focus on disability – as opposed to disability focused NGOs, which usually implement (or partner with local organisations for that purpose) different types of projects, with persons with disabilities as their primary beneficiaries.