Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

Lessons of History:
An Introduction


Sue Swenson is President of Inclusion International, and lives in Bethesda, Maryland. She may be reached at sue.swenson@inclusion-international.org.

In ancient times, people with disabilities were the scapegoats for plagues and disasters. Even now, in some parts of the world, people with disabilities may be blamed when big things go wrong. Today, fires, floods, plagues, agricultural failures, and even war and terrorism are known to have roots in climate change caused by our extractive modern culture.

Whatever the cause of disasters and pandemics throughout global history, long-standing social goals have been abandoned in the course of emergency response. Discontinuities of social advances mean persons with disabilities and their families suffer, even when they are not blamed. Their unemployment rate always exceeds the average, and in crises, worsens. Their need for social protection increases. Information to help them adapt is often inaccessible, and so is education. When health care systems are strained, people with disabilities may be triaged out. When families are caught in economic collapse, women and children with disabilities suffer more domestic violence. When food is insufficient, children with disabilities may be fed last. The list is endlessly disheartening. In this pandemic, we have lost millions of people worldwide, and people with disabilities have lost decades of progress.

The United Nations’ 2030 Agenda for Sustainable Development includes 17 goals meant to guide our efforts to make our planet safer. They include a commitment to disaggregate data by disability, age group, and gender for all targets. But though we may know which nations are trying to include people with disabilities in school and work, we don’t know how well interventions work for them. Funders may be devoted to outcome-based funding models and linear logic models that are inherently biased against people with disabilities. Research excludes us because we don’t fit the logic model and then later, we are excluded because we can’t show evidence. Policy based in science can be dangerous without a constraining commitment to human rights.

Without disaggregation of data, we do not know which of the most fragile parts of our planet are home to more people with disabilities. We cannot track what happens to them in disasters. Even in rich countries, we do not know how many children with disabilities lack effective access to education in a virtual environment, or how many people with disabilities are vaccinated. We don’t know how many family caregivers have died. We don’t know how many people have acquired new disabilities resulting from COVID-19.

People with disabilities also bring strengths to crisis situations, but these are poorly understood in models that only measure need. The blind man and his dog lead hundreds of coworkers out of a smoke-filled skyscraper. The deaf person keeps calm when sirens are so loud no one else can think straight. People with severe anxieties use their training to lead townspeople up the mountain to safety as a deadly tsunami approaches. The empowered person with intellectual disabilities demands that complex information be made accessible and understandable, which helps everyone.

Most important, people with disabilities and their families show us how we must connect with one another. In the early days of disability advocacy, it was groups of families who banded together to show their nations that integrated education and community life were possible. We develop plans that place the person with the disability in the center of a family and a community. In other words, we know that nobody makes it on their own. This truth challenges the commonplace interpretation of Darwin, and suggests survival of the fittest may mean those most likely to survive are those who are most successful at connecting to others, understanding their place in the world, and adapting together in the changing ecosystem. Connection is the ultimate fitness. People with disabilities and their families understand connection. Their wisdom will help us all.

Sue Swenson: The Right to Work and Employment | Author Sue Swenson discusses the challenges of COVID-19 on people with disabilities, particularly employment challenges worldwide.