Making humanitarian work inclusive of people with intellectual disabilities

At the United Nations headquarters in New York from June 10 to June 13, government officials came together for the 17th annual session of COSP. 

COSP stands for the Conference of States Parties. At COSP, government officials from countries that have signed the CRPD (the Convention on the Rights of Persons with Disabilities) meet.

They talk about making things better for people with disabilities all over the world.

At COSP17, Inclusion International hosted a side event with International Rescue Committee (IRC) and Education Cannot Wait (ECW) about the challenges faced by people with intellectual disabilities during conflicts and natural disasters.

During the side event, speakers shared lessons learned from essential work happening within the Inclusion International network in Ukraine, Kenya, Ethiopia, Burkina Faso, Colombia and Niger.

What was the side event about?

During the side-event, our members talked about what people with intellectual disabilities and their families need, and shared their advice for what humanitarian organisations can do better to include us.

Organisations of people with intellectual disabilities and their families (OPDs) all around the world are supporting people with intellectual disabilities and their families during emergencies, and there are things that humanitarian organisations can learn from our network’s experiences. 

Self-advocates Jane Akinyi and Geoffrey Kipngetich from our member organisation KAIH in Kenya reminded us that Article 11 of the CRPD says that states must make sure that people with disabilities are safe in situations of risk like wars or disasters, but we know that this is not always happening.

What are some of the challenges that people with intellectual disabilities face in humanitarian situations?

Our member in Ukraine, the All-Ukrainian NGO Coalition for Persons with Intellectual Disabilities (VGO Coalition) spoke during the event about what life is like for people with intellectual disabilities and their families in Ukraine during the war.

Parent Raisa Kravchenko and self-advocate Anna Solovey from VGO Coalition told us that, “the war has changed the life of every Ukrainian,” and shared how people with intellectual disabilities are particularly vulnerable during armed conflicts.

Raisa shared that because of the war, community based support services have been restricted. Families are under a lot of pressure, and people with disabilities are being pushed to live in institutions.

Humanitarian organisations have not always been able to respond to this.

When people with intellectual disabilities were being left behind by humanitarian organisations in response to the war, VGO Coalition has stepped up to respond to the needs of families while also advocating for more community based services like personal assistance and supported decision making.

Many of our members like VGO Coalition are filling gaps working to support people directly during crisis situations, and want to see more action from humanitarian organisations.

Why is it important to talk about including people with intellectual disabilities in emergency situations?

While many of these organisations want to help people with intellectual disabilities, they don’t always know how to do this. 

Mark Mapemba, a self-advocate and Project Manager at Inclusion International, shared how members told us that working with humanitarian organisations can mean that people with intellectual disabilities and their families can access more support during emergencies, but that there are many challenges working together.

Our members shared that there is still a lot of work to be done to make sure that humanitarian organisations are working in an inclusive way. Inclusion International is working on a project with IRC called “Inclusive and accountable” that is trying to make this happen. 

Aline Bazerly, the Inclusion Advisor for Violence Prevention and Response at IRC, talked during the side event about why our work to make humanitarian action more inclusive is needed. She shared how we learned that “less than 30% of the [humanitarian] organisations [we surveyed] consult and meaningfully involve and engage with adolescent girls with intellectual disabilities”. 

Inclusion International and the IRC are working together to collect the experiences and lessons from our network and from girls with intellectual disabilities so we can create training and tools to help humanitarian organisations be more inclusive.

What did our members share about their work to make humanitarian action more inclusive?

Mihret Nigusse, the President of Fikir Ethiopia National Association on Intellectual Disability (FENAID), shared that speaking with girls living in camps for internally displaced people matters. It is important for the girls that “their voices are heard and also their needs are addressed directly by those who best understand them.” 

Monica Cortes from our member Asdown Colombia also talked about our project on inclusive education in emergencies in Colombia and Niger in partnership with the International Disability Alliance and funded by Education Cannot Wait (ECW).  

Monica and the teams in Colombia and Niger are conducting interviews with children with disabilities and their parents to learn about their experiences trying to go to school after they have been displaced by conflict or crisis.

These interviews will help humanitarian organisations working on education in emergencies to understand what they need to do differently to include children with disabilities, especially children with intellectual disabilities and others more likely to be excluded. 

We want to make sure that we don’t leave anyone behind

Monica Cortes, Asdown Colombia

You can find out more about this project here and in interviews with Monica and Siddo Nouhou Oumarou, the National Project Manager in Niger.

The projects that our members talked about in Ethiopia, Burkina Faso, Colombia, and Niger give our network a chance to work in partnership with humanitarian organisations, working together to make humanitarian action more inclusive of people with intellectual disabilities.

What happens next?

Our presence at COSP gave our network a chance to talk about what the challenges are with inclusion in humanitarian action, and share their advice on what needs to change.

Inclusion International wants to close gaps in humanitarian work, and we will keep working closely with humanitarian organisations and OPDs across our global network to make humanitarian work truly inclusive. 

Going forward, Mark’s advice for humanitarian organisations was, “Do not try to make a project disability inclusive only at the end”.

The key message from our members during this side event was that to support people with intellectual disabilities and their families in humanitarian action, organisations must include us at every stage of the work.

Inclusion must be for everyone

Maha Khochein-Bagshaw, Thematic Lead on Inclusive Education and Disability, Education Cannot Wait

We look forward to sharing the impact of our project work in partnership with IRC and ECW on making humanitarian action more inclusive.