Designing From the Margins to Advance Equity

Originally published on The Medical Care Blog, May 4, 2023. Reprinted with permission.

"Access for the sake of access or inclusion is not necessarily liberatory, but access done in the service of love, justice, connection, and community is liberatory and has the power to transform." - Mia Mingus, community organizer, disability and transformative justice advocate 

Are you designing with equity and inclusion in mind? For public health and healthcare professionals, designing from the margins--also called inclusive or universal design--can help. Whether for policies, services, places, and public spaces, we should consider the structures and systems that shape people’s resources, livelihoods, visibility, and health outcomes. Otherwise, we’re likely to replicate the inequities embedded in traditional program and policy design thinking.

The term “margins” refers to groups pushed to the fringes of society by historical oppression or discrimination. But in numbers, these groups represent a majority of the U.S. In fact, according to the 2020 U.S. Census, 42% of adults identified as people of color, 26% reported having some type of disability, 21% experienced chronic pain, and 12% identified as LGBTQ+. People with marginalized identities disproportionately experience negative social determinants of health and poorer health outcomes. 

DESIGNING INCLUSIVE AND ACCESSIBLE PROGRAMS AND SERVICES IS A CHOICE

Public health and healthcare professionals have the opportunity, and the responsibility, to design programs and services that meet the needs of all people. Public health has an explicit focus on improving equity by serving communities that have been historically underserved, under-resourced, and disenfranchised. If we’re not reaching the most marginalized people, then we’re missing the boat.

Most U.S. systems, including the healthcare system, are designed for the dominant group in the center: white, straight, cisgender, able-bodied, wealthy, U.S.-born, English speaking males. This leaves out everyone who doesn’t fall into this group. Yet, when we design with marginalized populations at the center, we leave no one out and more people benefit.  

Think about curb cuts and ramps. Curb cuts date back to the 1930s in the U.K. when they were designed for people pushing prams (aka baby carriages). They were first implemented in the U.S. in Kalamazoo, Michigan in the 1940s to aid the employment of disabled veterans. It wasn’t until 1990, after years of advocacy by disability rights activists, that the U.S. passed the Americans with Disabilities Act and required curb cuts on all sidewalks. Made for people who use wheelchairs, canes, and walkers, curb cuts and ramps also benefit people who push children in strollers, workers pushing heavy carts, travelers wheeling luggage, runners, bicyclers, and skateboarders. People who might need to avoid those steps, such as people with injuries using crutches, and those with chronic pain and illness, benefit as well. 

APPLYING THE CURB CUT EFFECT TO HEALTHCARE AND PUBLIC HEALTH

This is known as “The Curb Cut Effect,” an example of a disability rights law that can benefit everyone. Other examples include closed captioning on screens, which many hearing people regularly use. Remote work and learning opportunities exploded during the pandemic and made jobs more accessible for many people with disabilities. They also improved work life for many women and people of color by reducing racism and sexism in the office.

One innovative healthcare delivery model is street medicine. This program centers the needs of people who experience homelessness by bringing medical care to them. Another example of designing from the margins is web accessibility. Nearly 1 billion people worldwide have vision impairment or blindness and cannot access most websites. Millions more have auditory, cognitive, neurological, physical, and speech disabilities that impact web accessibility. With inclusive design, we can make websites accessible to everyone. Inclusive web design also benefits people using mobile devices, those with temporary or situational disabilities, as well as older people and people in rural areas and those with slow internet connections. In other words, inclusive and accessible design benefits everyone.

How to (Re)Design Programs and Services From the Margins

Universal design is at the intersection of accessible, usable, and inclusive programs, services, and experiences. Inclusive design requires us to consider the needs and abilities of as many people as possible. It asks us to think innovatively and strategically about how to remove barriers to access and increase participation in daily activities for as many people as possible. This way, we're baking in equity and inclusion from the outset, rather than being reactive.

The Design Justice Network suggests asking three questions when designing a new program, policy, or service:

• - Who participated in the design process?
• - Who benefitted from the design?
• - Who did the design harm?

WHY DOES IT MATTER?

Public health and healthcare professionals have a responsibility to ensure that everyone has equitable access to the care they need. Designing from the margins is essential so that everyone - no matter their identities or experiences - can attain their highest level of health and reach their full potential. As activist and speaker Gary Karp aptly says, “When you design well for disability, you design well for everyone else; Universal design helps everyone.”