– Struggling with stigma and discrimination in an unaccommodating environment, Nujeen Mustafa knows all too well the difficulties children with disabilities face in emergency and protracted crises.
Struggling with stigma and discrimination in an unaccommodating environment, Nujeen Mustafa knows all too well the difficulties children with disabilities face in emergency and protracted crises.
Born in Syria 23 years ago with cerebral palsy, Mustafa had never seen the inside of a classroom until she made a 3,500-mile journey from Syria to Germany in a wheelchair aged 16 years. She entered the German education system in Grade 8 and completed her GCSE at 21. Her compelling story is captured in the book ‘Nujeen, One Girl’s Incredible Journey from War-Torn Syria in a Wheelchair’.
“Back in Syria, I was homeschooled by my older siblings because the infrastructure was not accessible for people with disabilities. My siblings taught me how to read and write. I read books on my own and watched television to compensate for the lack of formal education,” Mustafa tells IPS.
Mustafa addressed the recent Global Disability Summit in a session with Education Cannot Wait Director Yasmine Sherif. The Government of Norway, the Government of Ghana, and the International Disability Alliance co-chaired the summit during which participants committed to “eliminating stigma, barriers, and discrimination against persons with disabilities through legislation, policies and advocacy work done together with organizations of persons with disabilities.”
“Nujeen’s incredible journey is an inspiring story of hope. However, for a majority of children with disabilities in the midst of armed conflict and crises, their stories, unfortunately, don’t end as positively as Nujeen’s,” says Sherif. “We can no longer leave these children, among those left furthest behind, in the shadows.”
According to UNHCR registration data, an estimated 11.7 million Syrians are displaced. Three percent of the registered Syrian refugee population lives with disabilities.
Globally, the World Health Organization (WHO) statistics show that approximately 20 million out of the 135 million people in need of humanitarian assistance live with some form of disability and lack rehabilitation support and assistive technology.
The WHO says this figure does not include people with conflict-caused disabilities. Within this context, Mustafa says invisible disability is a most pressing issue for people with disabilities and more so children in conflict and crises.
“People in conflict situations or those fleeing conflict are likely to have acquired a disability. Perhaps they lost a leg, an arm, sight, or hearing due to conflict. Of concern, data on refugees or internally displaced persons are not filtered or seen through the disability lens,” she observes.
“Often hidden from society, children with disabilities are, more often than not, much more invisible. Even in rehabilitation or a country’s reconstruction processes, accessibility and inclusion of children with disabilities are not taken into account.”
Research by WHO confirms that volatile and unpredictable safety and security situations in emergency and protracted crises create significant and critical protection gaps.
“Children with disabilities are being left behind the education system because, in crisis situations, there are many competing priorities. I do not believe that enough organizations have the necessary data concerning people, and more so children, with disabilities in emergency and conflict situations,” Mustafa says.
There is, therefore, a great and urgent need to work on mechanisms that could detect invisible disability, which requires significant concerted efforts from individuals, families, humanitarian organizations, and governments.
“We need to prioritize systematic awareness-raising of the specific needs of children with disabilities at the high-level decision-making process. People that can make a difference in the lives of these children do not see them,” she cautions.
“Education is the building block towards a proper future, but children with disabilities are not seen as people worth investing in. There is a perception that education or training will be of no value to these children because there will be no opportunity for them to utilize acquired knowledge.”
As such, UNICEF’s most recent data shows one in every ten children globally have a disability, and nearly half of all children with disabilities are likely to have never attended school.
“My siblings bought me books every school year so that I consume the same content as my peers. This was of high value to me. It helped me cope and come to the realization that perhaps there were some alternative ways for me to get an education similar or close to what my peers had,” Mustafa recalls.
This family support built her confidence and drove her to explore her potential. Today, Mustafa is an author and a disability rights advocate on a global platform, becoming the first Syrian person with a disability to brief the United Nations Security Council in 2019.
Families or caregivers of every child with a disability need to be educated to recognize the potential in their child. To fan this potential, not despite the disability, but because of it.
Education, she emphasizes, is a vital part of building a confident and self-assured individual who is ready to go out, face the world and fulfill their potential.
Mustafa says social barriers and stigma surrounding disability within current education systems must be broken down. This calls for a more comprehensive understanding of who is at school, who is not, and why.
Placing children with disabilities at the heart of humanitarian crisis response requires the systematic documentation of existing protection gaps.
“We are dealing with a multilayered problem that includes factors such as logistics, management, planning, and implementation of crisis response as well as social barriers,” she says.
Against this backdrop, Mustafa spoke of the frequently unmet needs of vulnerable children with disabilities in conflict and emergencies. She painted the harsh reality of lack of and, at best, great difficulties in accessing safe, quality, and disability-inclusive education.
“I am a firm believer in disability-inclusive education because this is how we eliminate stigma towards people with disability. If people from all walks of life know and interact with one person with a disability and especially at a very young age, perceptions around what is considered the norm will change,” she says.
Mustafa’s own experience with Germany’s education system affirms her belief that under the right conditions, children with disabilities can flourish to their fullest potential to become agents of positive social change.
“Whether it be individual, societies or organizations, we should stop perceiving children with disabilities as burdens – because they are assets. Children with disabilities are not problems to solve.”
Mustafa called upon humanitarian agencies to raise awareness of the importance of education. To ensure that when countries in protracted conflict and emergency crises or fragile peace resume some semblance of education, children with disabilities are not left further behind.
Credit: @LailaOnMars, Twitter