People with Disabilities are not Innately Vulnerable

Considering that one in five people on Earth will experience some type of life impacting disability in their life (some researchers say one in four), being a person with a disability is mainstream.

If the disability community is not included in planning and design, an increase in extreme weather events could prove disastrous.

But a century of modern building and planning in the United States has created a barrier-filled built environment where people with disabilities continue to be limited by poor mobility and transit, civic and private buildings, park and open space, and dozens of other elements of inaccessible infrastructure.

Courtesy of Metro Valley Transit

The lack of universal design, joltingly still a major issue nearly three decades since the passage of the Americans with Disabilities Act federal civil rights legislation, hampers quality of life in the disability community on a daily basis.

Adaptation and resiliency projects — and the billions of dollars spent on them across the nation — can be a once-in-a-lifetime opportunity to build and plan inclusively for all abilities. But if the disability community is not included in planning and design, not only will they remain segregated by barriers, but an increase in extreme weather events could prove both disastrous and deadly.

Images from Hurricane Katrina, Superstorm Sandy and countless earthquakes, wildfires, mudslides, snow storms, floods, heatwaves and other extreme weather events on U.S. soil document heartbreaking images. They show people who use assistive mobility devices stranded from evacuation shelters and those dependent on oxygen, medicine, cooling and other treatments by electric-powered machines, which are rendered useless by long-term loss of power.

Courtesy of the U.S. National Guard

“With greater vulnerability during storms, floods and extreme heat; susceptibility to invasive disease; and the complex disability-related challenges of relocation and forced migration (i.e. finding new housing or support networks); climate disruptions are harder for these populations at virtually all levels compared to those without disabilities” wrote World Institute on Disability experts Marsha Saxton, director of research and training, and Alex Ghenis, a policy and research specialist, in an article published by Environmental Health News.

“The clear evidence from past and current natural disasters and refugee situations shows that people with disabilities have a lower survival rate than those without disabilities, and may even be neglected or left to die. Photo journalism showing the impact of Hurricane Katrina in the southeast United States in 2005 documented this with tragic photos of deceased people in wheelchairs as crowds of other displaced people streamed by,” the co-authors said in the 2018 article.

Photo courtesy of the U.S. National Guard

“Very strongly, the slogan in the disability community is ‘nothing about us without us,’” Saxton said of the need to include people with disabilities, during a live interview when Hurricane Dorian threatened Florida’s entire east coast and 48 hours before it brought destruction to the Bahamas. “Well-intentioned policymakers think they know what’s best for the disability community, but they make strident mistakes. All the planning and policy must use leaders and stakeholders from the disability community.”

Saxton, who has congenital leg weakness and walks with leg braces and trekking poles, said sea-level rise is going to require mass migration in the not-too-distant future. She said significant or whole populations of flood-prone cities will be forced to relocate to higher ground. She fears that most senior planners in the public and private sector are not taking the unique needs of the disability community into account.

Photo courtesy of the U.S. National Guard

For example, an able-bodied person can relocate from a ranch house to a third-floor walkup apartment with merely a little inconvenience posed by stairs. A person with a disability cannot be accommodated by multifamily housing without an elevator, by split-level, single-family housing, or a ground-floor unit of any kind of dwelling that has a narrow doorway, an inaccessible restroom, a kitchen with islands, or other barriers to mobility.

“Even people who recognize that climate crisis is occurring are in denial that we don’t have to take action now,” she said. “City planners, architects, people who work in real estate have to be much more activist-minded. Raising buildings on stilts is not going to be the solution.”

Raising streets, sidewalks and buildings must respect the needs of the disability community and inclusively serve all people.

Saxton, who lectures in Disability Studies at the University of California at Berkeley, said raising streets, sidewalks and buildings must respect the needs of the disability community and inclusively serve all people.

Photo by Mike Gifford

“Ironically, climate change and the flooding and extreme weather events that it is causing to increase — make it imperative to think about disability as a major factor in our communities. [With climate change,] incidents of disability will increase — we will have to think of people who cannot run from the fire or jump in a boat,” she said.

Saxton noted that tens of millions of people — from infants to the elderly and many with disabilities — depend on electricity to keep vital medicines refrigerated, oxygen machines working, dwellings cooled from 100-plus degree heat and other life-saving apparatus functioning.

“Those who should be leading us are in denial about designing for the disability community. We have to step on toes,” Saxton said “We need to get upset about this.”

Marcie Roth, CEO of Partnership for Inclusive Disaster Strategies, began her focus on people with disabilities in disasters in the immediate aftermath of the September 11, 2001 terrorist attacks, serving as an advisor to the White House on the rights and urgent needs of disaster survivors with disabilities living in the area around ground zero.

“The issues facing people with disability in disasters are not just (their) issues, they’re everybody’s issues. There are many opportunities to benefit the whole community when you take some basic steps to make sure plans and facilities meet the needs of people with disabilities, older folks and other people with some mobility needs,” she said during an interview as Dorian formed into a killer Category 4 hurricane.

Roth said shelters must be retrofitted to be entirely inclusive for people who need acute care. Otherwise, families can be separated between those needing such care and those that do not. She said people living alone who cannot make it to a special needs shelter “end up in an emergency room — the last place you want to be during a disaster.”

There are many opportunities to benefit the whole community when you take some basic steps to make sure plans and facilities meet the needs of people with disabilities.

Roth said city, county and state governments that fail to design for all are violating a long-established federal law.

Courtesy of Fairfax County Virginia

“Every year, billions of federal dollars come to communities for recovery, rebuilding, hazard mitigation, programming and communications. For nearly a half century, the Rehabilitation Act of 1973 has required that every federal dollar spent must be done in a way that accommodates all. There are no waivers. The Rehab Act, older than ADA, requires spending money to make communities accessible.”

Roth emphasizes that climate change adaptation is a great opportunity for communities to invest in housing, transportation, community resources, parks, pools, roads, sidewalks and major infrastructure that are fully accessible to people with disabilities.

“There is an obligation to make (facilities and infrastructure) accessible. It is hard to understand why people would balk at that,” she noted of public and private sector planners, architects and engineers that push back against universal design. “First, they have a legal obligation. Second, it’s the right thing to do. Third, it’s a smart business practice because you want all of your community to access resources with as little (extra) accommodation as possible.”

Roth said as communities rebuild after a disaster — or new towns are created to relocate from places that will be underwater in the near future — cities must be aggressive in requiring that dwellings, even single-family housing, accommodate a wide range of families and abilities. Especially since 20 percent of the U.S. population is experiencing some form of temporary or permanent disability at any point in time.

Courtesy of Miami-Dade County Emergency Management

“Visitability is such a basic feature that can enhance the value of your home,” she said of designing a home that has a level entrance, wide doorways and bathrooms/ kitchens/bedrooms designed in a way that allows fast/ cost-effective adaptation. “After an injury, be it at play or in a disaster, most people would not be able to come home to their own house. Because less than one percent of homes are designed to be inclusive, people end up in a nursing home for months while they try to figure out if they can adapt their home, move to a new place, or afford either solution.”

Photo by Steve Wright

Miami-Dade County, with a population of nearly three million all located just a few feet above sea level and at ground zero for devastating hurricane landfalls, is a leader in best practices for emergency evacuation for people with disabilities. The County’s Emergency Management Office does aggressive outreach to the disability community, including prominent website and social media information about its Emergency & Evacuation Assistance Program (EEAP). The program provides evacuation support to residents who need specialized transportation assistance or whose medical needs prevent them from evacuating on their own.

Photo by Steve Wright

Residents with disabilities or those who need skilled nursing care, assistance with daily living or have life-saving medical equipment dependent on electricity are urged to register with EEAP. The program — for individuals with functional and access needs, who live alone or with families — offers specialized transportation; safe shelter; medical monitoring; and wellness checks and is used for emergencies such as hurricanes, tornadoes, wildfires, chemical/radiation/hazardous materials releases and widespread power outages.

All Miami-Dade County hurricane evacuation shelters exceed ADA standards for emergency shelters, and include accessible entryways, service and activity areas and bathrooms. Service animals are permitted in all county hurricane evacuation shelters.

As communities rebuild after a disaster, cities must be aggressive in requiring that dwellings accommodate a wide range of abilities.

Todd Holloway is the Emergency Preparedness Subcommittee chair of the National Council on Independent Living, and Disability Integration Advisor at the Center for Independence in the Seattle-Tacoma Washington area. He has Meniere’s Syndrome, which causes hearing loss and episodes of extreme vertigo — one of the “invisible disabilities” that impacts daily lives but is not readily apparent to others.

“My frustration is the things we’re pushing for are good for everybody,” he said, explaining that Universal Design is not the same as trying to interpret complex and litigated ADA compliance. “We need to work with nature, not against it. We’ve learned that working against it doesn’t work. There are so many distractions for engineers and builders, but a common-sense approach — designing with accessibility for all — makes sense economically, environmentally and in terms of sustainability/resiliency.”

Climate change mitigation is a great opportunity for communities to invest in housing, transportation, community resources, parks, pools, roads, sidewalks and major  infrastructure that are fully accessible to people with disabilities.

Holloway is astounded that FEMA standards encourage rebuilding to the prior standard that existed when the structure was built. He said this ignores the golden opportunity to look at a disaster as a way to rebuild and remodel to create more housing units and more buildings that are inclusive to all.

Courtesy of Oregon DOT

“We have best practices in front of us, but it’s not getting done. Government and private sector partners are not playing on the same page,” he lamented. “Looking at resiliency and adaptation — what will save the country more money is building it green, building it accessible the first time.”

Aida Membreno-Curtis, a landscape architect and certified arborist, is the founding principal of Curtis+Rogers Design Studio in Miami. In addition to the environmental benefits of increasing tree canopy to combat heat islands in Miami, she personally knows the positive impact of shade in the sun-scorched subtropics. She has lupus and excess exposure to sunlight can cause flares in systemic lupus, triggering symptoms such as joint pain, weakness and fatigue.

Membreno-Curtis is concerned that coastal areas are spending tens of millions — raising roads, sidewalks, buildings and installing dozens of stormwater pumps that can fail when a major storm knocks out power — on solutions created only by public works departments and engineers. She respects engineers, but cautioned that “solutions done from a singular point of view create other problems, including social equity problems.”

Climate change solutions need to take a very multidisciplinary approach with a team of people from different angles.

“What we have found is all these climate change solutions need to take a very multidisciplinary approach with a team of people from different angles: engineers, landscape architects, environmental scientists, accessibility experts and other consultants,” she said. “The challenge is to look at solutions for resiliency with a three-pronged approach:

1. Ecologically minded – we need to work with nature and understand nature.
2. Equity for all – otherwise we’re creating barriers for people with disabilities or we’re punishing one socio-economic group while protecting the property of another’s.
3. Economy – we must be careful about making unbalanced economic framework when we undertake billions of dollars’ worth of infrastructure projects.”

Membreno-Curtis said even a small project benefits from looking at all angles and making sure the finished project is accessible to all.

Courtesy of SDOT

Ghenis, co-author of the Environmental Health News best practices article, who uses a motorized wheelchair for mobility, said many government leaders don’t realize how important something as simple as access to electricity is to people with disabilities. Planned blackouts, a response to trying to reduce forest fires in California, “is frightening.”

“They are now saying in fire risk days, they are going to need to shut down high-voltage transmission lines. That will lead to blackouts from between 12 hours to 2 days. For people with disabilities — that need to get up and down in an elevator, to plug in a wheelchair to charge, to refrigerate medication — this will be terrible. These are the unanticipated consequences of climate change response.”

The planning process must take advantage of the creativity and insights of people with disabilities.

Ghenis said design must be simplified whenever possible, or people with disabilities will not be able to get back to their dwellings after a small emergency or large disaster. He explained that elevators are extremely expensive to repair and it takes a long time to get parts. Outdoor lifts rust easily, but a ramp usually simply needs to be cleared of debris to function again.

Photo by Mike Gifford

“Able-bodied folks do not always recognize the exact complexity of needs of people with disabilities,” he said. “We must take advantage of the creativity and insights of people with disabilities. They can define what their specific needs are, do a run through to make sure barriers haven’t been created and take a look at the big picture when design flaws can be corrected quickly and with minimal expense.”

Deborah Dietz is executive director of Disability Independence Group, Inc. (DIG), a nonprofit disability rights legal advocacy center that provides litigation services, education, outreach and training in the community

“With storms last year in Florida’s Panhandle, there were a lot of disaster issues with housing. The old HUD housing was inhabitable for people with disabilities. My husband, Matthew Dietz, who is the litigation director of DIG, was calling HUD and saying `you have rules and procedures that all people have a right to have a place to live. You can’t abandon people with disabilities,’” she said.

“You go to the shelter where you’re evacuated. Then they want to close the shelters because they’re in schools and places that need to get back to serving the purpose they were designed for. The quick solution is to institutionalize the person with no real plan to get back to the home they were in before the disaster. We are making sure losing one’s home to a disaster is not a one-way ticket to a person with a disability not being able to live in their community,” Deborah Dietz said.

Dietz is proud of the efforts her state is making to do a better job, saying “Hopefully the horrific stories of the last few years will be less and less.”

“This is a fresh opportunity to do it right, to look at building and the environment through a more enlightened lens,” she said. “You’re forced to create new housing, new means of transportation — think of it as a path to building in a more inclusive way that is accessible to everyone. Think about people with disabilities before you start your big project. Bring them to the table, work toward universal design.”