Nothing About Us Without Us
Reflections from a webinar on disability inclusion in humanitarian action and research
Today, an estimated 41 million persons with disabilities are affected by humanitarian crisis. When a crisis hits, persons with disabilities face greater risks to their wellbeing and survival. In fact, research shows that in crises, the mortality rates for persons with disabilities can be two to four times higher than that of persons without disabilities. Contributing to this, humanitarian crises exacerbate and expand the barriers people with disabilities experience in accessing lifesaving services.
Despite a concerted effort toward inclusive humanitarian action, challenges persist. With the Global Disability Summit approaching in February 2022, there is a unique opportunity to ensure commitments made protect the health and rights of persons with disabilities who are impacted by humanitarian emergencies.
On December 14, 2021, the EQUAL and RECAP consortiums hosted a webinar titled “From Research to Response: Lessons for Making Humanitarian Action More Inclusive.” Below is a summary of the webinar including key takeaways and recommendations from the webinar hosts and from four advocates advancing disability inclusion in DRC, Somalia, Nigeria, and South Sudan. You can watch the complete webinar recording here
Key Takeaways
The sector needs to do better: Organizing this webinar was a learning curve for EQUAL and RECAP partners. Directly sharing the perspectives of persons with disabilities living in countries affected by conflict meant having the webinar in three languages, with two sign language interpreters and closed captioning. We experienced logistical challenges and technical glitches. One speaker noted “patience is our characteristic if we are person with disabilities.” Making the effort to address these challenges and ensure programs are accessible is imperative.
Persons with disabilities are more than beneficiaries: Persons with disabilities are often seen as recipients of aid and rarely engaged meaningfully in the design and execution of programs. This has a ripple effect resulting in programing and research studies that lack firsthand insight from persons with disabilities, does not allow persons with disabilities to be active participants in systems and services that impact their lives, and contributes to growing inequities including in the workforce.
Policies have yet to translate into action: In recent years, there have been several important policy commitments to make humanitarian action more inclusive including the Charter on Inclusion of Persons with Disabilities in Humanitarian Emergencies; a resolution adopted by the UN Security Council recognizing disability rights in the peace and security pillar of the UN; and the Interagency Standing Committee (IASC) guidelines on inclusion of persons with disabilities in humanitarian action. Without the evidence needed to support effective implementation, these policies remain insufficient.
Barriers are diverse and put persons with disabilities at heightened risk: To ensure humanitarian services remain accessible to persons with disabilities, barriers must be proactively identified and addressed. For example, when visiting a health center, infrastructure may not be designed for a wheelchair user; providers may not know how to communicate with a deaf person; fear and stigma may result in disrespectful care of people with intellectual disability; when facilities are damaged, closed, or distant, they may be even less accessible to people with mobility issues; etc.
COVID-19 created additional barriers and exacerbated risks: Persons with disabilities have not only been disproportionally impacted by the coronavirus, but also by the additional pandemic-related challenges of accessing information about prevention and care; increased rates of violence and abuse; and decreased access to lifesaving services due to lock-downs and restrictions on movements.
Recommendations
At the end of the webinar, each speaker delivered a call to action for the humanitarian community to make humanitarian research and programming more inclusive. These included:
Strengthen capacity among humanitarian actors for inclusive action & research: There is a critical need to build the capacity of humanitarian actors to implement existing policies and guidance, including in the most challenging contexts. This includes training NGO staff on how to analyze the unique risks and capacities of persons with disabilities. This also includes scaling up mechanisms of technical support on disability inclusion, revising tools to better integrate disability inclusion considerations, and providing more opportunities to share learnings.
Facilitate meaningful participation of an organization of persons with disabilities: Representative organization of persons with disabilities (OPD) are well placed to participate in the design of research studies, to train persons with disabilities to conduct research and to support with implementation. Humanitarian actors – including donors – must take steps to remove the barriers that currently make it difficult for larger NGOs to partner with local OPDs, including administrative and financial barriers.
Engage persons with disabilities as part of the team: Persons with disabilities should be meaningfully engaged as part of research and program teams helping to ensure different cultures, nuances, and barriers are understood and included across all program tools, actions, and analyses. For example, when conducting key informant interviews, a fellow person with disabilities may help people feel more comfortable and improve data collection.
Integrate disability inclusion from the onset: Whether you are designing a research study or a service delivery program, humanitarian actors should have an inclusive approach from the very beginning. For example, consulting people with disabilities and OPDs to understand the unique needs and capacities of persons with disabilities, the barriers they face, and the type of solutions/approaches to be considered.
Budget appropriately: Sufficient funding should be allocated to enhance inclusion. This may include hiring staff who are members of different disability communities, allowing budget for interpretation services, accessibility tools, etc. It is also important to financially compensate persons with disabilities and their representative organization that participate in program or research activities.
Invest in and strengthen data systems: There is a persistent lack of data about persons with disabilities including the number of people affected in a given crisis, the barriers they face, their capacities and preferences. We need better evidence to understand how persons with disabilities experience humanitarian emergencies and how we can deliver a more effective and relevant response. Disaggregating data using the Washington Group on Disability Statistics should be a starting point for any humanitarian organization embarking on a research or program design.
You can learn more about the hosting consortiums and the webinar speakers below.
Webinar speakers included:
Kirstin Lange - UNICEF Programme Specialist (Disability Inclusive Humanitarian Action), Co-Chair of the Disability Reference Group.
Amina Afdi - Somalia Association of Female with Disabilities
Caroline Atim -South Sudan Women with Disabilities Network (@OgwangAtim)
Therese Mabulay - President of the North Kivu (DRC) Paralympic Committee, and founder of Asam – Stand Up Disabled.
Sulayman Abdulmumuni Ujah - Chairman, Joint National Association of Persons with Disabilities (JONAPWD), Abuja Nigeria (@ujahdeen)
Hosting organizations included:
EQUAL is a multi-country research consortium generating evidence on effective approaches to deliver life-saving maternal and newborn healthcare in countries affected by conflict. EQUAL partners work in the DRC, Somalia, South Sudan, and Nigeria. EQUAL is funded by the UK government.
RECAP is the global research consortium on strengthening research capacity and knowledge generation to support preparedness and response to humanitarian crisis and epidemics. This is funded by global challenges, which is led by the London School of Hygiene and Tropical Medicine in partnership with universities and nongovernmental organizations working on health and protection in humanitarian action. RECAP has hubs in Lebanon, Syria, and the UK with additional research sites across many contexts. RECAP is funded by the Global Challenges Research Fund (GCRF).