Listening to Girls with Intellectual Disabilities in Humanitarian Crises

To try and make humanitarian action more inclusive, the International Rescue Committee and Inclusion International are working together on a new project called “Inclusive and Accountable.”

This project is trying to understand the needs of young girls with intellectual disabilities in humanitarian settings, and help them be better included.

A humanitarian setting is a place where people need help because of problems like natural disasters, wars, or emergencies. In these situations, people might not have enough food, water, or shelter, and they need support to meet their basic needs and get through the crisis. They also might have had to leave their home because of the crisis.

Earlier this year, at the Conference of States Parties to the CRPD (COSP17), we hosted an event to share what we have learned in this project alongside our work with Education Cannot Wait.

Working Together

Working closely with Inclusion International members - FENAID in Ethiopia and APEE in Burkina Faso - the project team did consultations with adolescent girls with intellectual disabilities and their family members in July 2024.

These consultations took place in internally displaced persons (IDP) camps in Shire, Ethiopia, and in communities hosting displaced persons in Diabo and Diapangou, Burkina Faso.

An internally displaced person (IDP) is someone who has to leave their home because of a crisis like a war or disaster but stays within their own country.

Meaningful Participation

Our partnership with our members and the IRC was very important to this project.

Because these girls with intellectual disabilities are even more at risk, it was very important to bring together experts.

Inclusion International and our members are experts on how to include girls with intellectual disabilities, and the IRC is an expert on how to support people in crisis. These experts came together to form the Inclusive Advisory group.

Importantly, self-advocates were key members of the project team and advisory group. Their involvement from the outset ensured that the lived experiences of people with intellectual disabilities were at the core of the project’s design and execution.

Working together on these consultations meant:

• Joint decision-making: We made all of the big decisions together.
• Inclusive Advisory Group: We created and co-led an Inclusion Advisory Group to get more inputs from experts.
• Capacity Building: We supported capacity-building of IRC country teams, FENAID, APEE, and self-advocates.

The consultations were also designed following the Listen Include Respect guidelines. This mean that self-advocates were part of the planning team and led the work to write the consultation questions, and also that self-advocates co-led the consultations.

The guidelines helped make sure everything was inclusive and the girls could take part meaningfully.

These decisions led to the inclusive design of consultations, which focused on including and listening to the adolescent girls, not just their family members, organisations, or aid workers.

"Many of the parents said that they did not know that the girls were able to express themselves the way that they did in the consultations."

Mihret Nigussie, President of FENAID in Ethiopia noticed that, "many of the parents said that they did not know that the girls were able to express themselves the way that they did in the consultations. The parents at the consultations learnt more about self-advocacy."

This highlighted not only the lack of information that many families face but also the transformative power of these inclusive consultations.

Understanding Needs

During the consultations, girls with intellectual disabilities told us about some of the big challenges they face in humanitarian settings:

• Safety Concerns: Many of the girls expressed feeling unsafe outside their homes. One girl shared, “I don’t want to go out from my home… Because going out stresses me.”
• Lack of Accessible Communication: Communication barriers were a common issue, with one girl explaining, “I dropped out of school because I’m not understanding what the teachers are saying.” This points to a need for more inclusive emergency education services in camp settings - you can read more about our work to make this happen with ECW and IDA here.
• Social Exclusion: Several girls reported feeling excluded from social groups, stating, “When I want to join my classmates, they won’t let me. I don’t know why.”

Families also voiced their concerns about being left behind: “No one has ever come to tell us about aid distributions. We find out through other people.”

How we conducted the consultations

As an OPD, we know that involving organisations of people with disabilities to train humanitarian staff is crucial. We made sure that our members worked closely with IRC teams.

We also made sure that our work on the consultations followed the Listen Include Respect Principles, this included having self-advocates from Ethiopia, Selam, and Burkina Faso, Pelagie, co-lead the consultations.

Working together and inclusively helped IRC and our members improve their understanding of one another and created a more balanced power dynamic. Building a respectful partnership allowed everyone to share their strengths.

What works for inclusive consultations:

We have long recognized the importance of self-advocate leadership and accessible methodologies in consultations, and this project reaffirmed that these are the approaches that consistently work:

Self-advocates as co-facilitators make spaces more inclusive. It is important for co-facilitators to have time to build rapport and practice together. Adolescent girls with intellectual disabilities participate more willingly when they feel safe, welcomed, and affirmed.

Using accessible stories and drawings helps girls express themselves, and these methods need to be adapted to fit the local context. Activities involving music, singing, and dancing make the girls feel more comfortable. Role plays provided another way for them to show how they want to be included.

Engagement of families leads to jump-starting inclusion at home. Many family members who were taking part as supporters saw their girls speak up for the first time, which was deeply impactful. Caregivers also appreciated having a space to share their own experiences, which was often a first-time experience for them.

Self-advocates and humanitarian staff working in partnership create inclusive practices. Even one experience of working with adolescent girls with intellectual disabilities can be transformative for humanitarian staff and helps them learn what works for inclusion in practice.

The consultations were impactful not only for the families involved, but also for humanitarian organisations.

As the project moves forward, the team will analyse the data collected, develop training modules for humanitarian staff and organisations of persons with disabilities, and validate these modules with the same girls who participated in the initial consultations.

This project represents a big step towards more inclusive humanitarian aid. By listening to the voices of girls with intellectual disabilities and their families, we can create programs that meet their needs in humanitarian settings.