What does it look like to have a disability in an emergency?

This blog, authored by Isabelle De Muyser, was originaly posted by OCHA, on 08 December 2023.

 

Disability is an evolving concept and “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (Convention on the Rights of Persons with Disabilities, Article1).  80% of persons with disabilities live in the Global South. In any crisis, whether their impairment is physical, mental, or intellectual, they are confronted with barriers that halt their full access to humanitarian assistance and protection. These often add up to existing discrimination, marginalization, or exclusion from society.

Because disability often goes hand in hand with other barriers due to gender, age or ethnic origin, disability inclusion looks at the specific needs and priorities of persons with disabilities and to foster their meaningful participation in decision-making affecting them. 

But what does disability concretely look like in an emergency? Isabelle De Muyser, OCHA's Disability and Inclusion focal point, explains the challenges that people with disabilities can face, and why this call for a better and more inclusive response.

 

There are over 70 million deaf people around the world. And in the event of conflict or natural disaster, they won’t have access to timely information and critical communication on the events occurring around them if these are not in accessible formats or in their national sign language. 

Given that deafness is often an invisible impairment, deaf people are often overseen, and are twice as likely to suffer from psychological issues, such as depression, anxiety, and isolation. This puts them at further increased risk of marginalization, abandonment, violence, and death, in addition to the chronic lack of access to safety, relief and recovery support in an emergency, including in humanitarian settings such as refugee camps. 

With crucial information on safety, evacuation and support services not being accessible to them, deaf people are constantly left behind. 

 

For people who are blind or who have low vision, emergencies turn out especially challenging because their mobility, autonomy and independence may become limited, as they cannot access the infrastructure and support they usually rely on, and often first responders are not equipped to adequately communicate instructions or procedures to them. Not being able to see what is happening in a crisis can trigger additional anxiety and uncertainty. 

Furthermore, in instances of sexual or gender-based violence, to which they are particularly exposed, blind people are also less likely to be able to identify their perpetrators or to make use of complaints and feedback mechanisms unless they are designed around their needs.

 

Albinism is a non-contagious, genetically inherited condition that affects people regardless of race, ethnicity, or gender. The condition is characterized by partial or complete absence of pigment in any part or all the skin, hair, and eyes. Albinism often results in two congenital and permanent health conditions: visual impairment to varying degrees and high vulnerability to skin damage from ultraviolet rays, including skin cancer. 

Across the world, people with albinism are often discriminated, cut out from work, health, social and education services. Parents of children with albinism, especially mothers, are also subjected to stigma, isolation, and ostracism. In some countries - primarily in some parts of Africa, where people with albinism are hyper-visible - the physical appearance of people with albinism has been the object of erroneous beliefs and myths influenced by superstition, witchcraft, or both, fostering acute marginalization, social exclusion, and physical attacks. Women and girls with albinism face unique and compounded discrimination based on gender. All these risks may be compounded and exacerbated during a humanitarian crisis.

 

Whether at birth or the result of an injury, physical disabilities that limit people’s mobility inevitably put them at higher risk in a crisis because they cannot escape danger – whether conflict-related on due to a natural disaster – and because they are confronted with practical barriers to accessing humanitarian aid - food, sanitation, and medical assistance. 

Especially if aid distributions are far from where they live, if the roads are deteriorated, and if the appropriate infrastructures are not present, they have more difficulty in accessing the services they need to survive. 

More than 2.5 billion people require one or more assistive devices to support communication and cognition – such as wheelchairs or hearing aids - but one billion people, living mostly in poorer nations, have no access to them or can’t afford them. In situations where people have to flee for their lives, they often have to leave behind their wheelchairs or other assistive devices. 

When they don’t, these devises often end up lost or broken, but without them, people cannot be mobile and they risk further isolation, poverty and hunger, exclusion, and heavier dependance on family, community, government and humanitarian support. This is especially true for children, for whom access to assistive technology may be the only way to access education. 

 

People with neurodiversity or developmental disability - such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Asperger or Down Syndromes, and more - often experience language impairment, executive functioning difficulties sensory troubles, and medical conditions associated with their disability – such as anxiety or depression. 

They may have difficulties with intellectual functioning and adaptive behavior, and they may have sensory processing challenges, including heightened sensitivity to light, sounds, odors, tastes, and touch, that predispose them to more difficulty with coping during emergencies. 

Their cognitive rigidity and difficulties with shifting focus can impair how they adapt to the trauma arising from a humanitarian crisis, and their difficulties with emotional regulation and coping skills can prevent them from taking quick decisions to adapt to the new landscape. 

Conflicts may affect the institutions in which they live or are being treated, and the lack of appropriate medical treatment and support resulting from crisis may further affect them. 

Research shows that although persons with disabilities are 1.5 times more likely to be victims of gender-based violence than those without disabilities, those with mental illnesses are at nearly four times higher risk because perpetrators regard them as ‘easy targets’.

 

As we just celebrated the 2023 International Day of Persons with Disabilities, let’s remember that persons with disabilities are not a homogenous group, and that intersection factors such as race, age, gender, and other diversities can significantly increase the marginalization and risks that they are facing in humanitarian contexts.

Yet, despite the many barriers that they encounter, especially during emergencies, persons with disabilities often display remarkable resilience and strength. Their dignity helps them remain active in their communities and as such, they want their voice heard in decisions that pertain to them. Collaborating with organizations of persons with disabilities can be a great way to get a better understanding of their challenges, strengths and needs, so as to better cater the response to their reality.