This July marks the 35th anniversary of the Americans with Disabilities Act. The ADA is a landmark civil rights law, designed to prohibit discrimination and ensure equal opportunity for people with disabilities. What many people don’t realize is how much of its power came not just from lawmakers and activists, but also from data and statistics.
The groundwork for the ADA began well before it was signed into law in 1990. Much of that groundwork came from statisticians and survey methodologists at federal agencies, including the Census Bureau, the Bureau of Labor Statistics, and the National Center for Health Statistics. These professionals were reshaping how disability was measured and, therefore, how disability was seen.
Before the work of these statisticians, large segments of the disabled population were easily missed in federal surveys. Some surveys excluded people living in institutions, or they counted only those receiving government benefits. Others defined disability narrowly, asking only about “work limitations,” without probing the reasons or impacts. Proxy reporting by household members often undercounted people with less-visible disabilities.
Circumstances began to change in the 1980s. In 1984, the Census Bureau launched the Survey of Income and Program Participation, which soon included targeted disability supplements. These new survey questions took a different approach: They focused on how disability affected a person’s daily life—for example, whether someone had difficulty walking, dressing, or using the telephone.
The data from these improved federal surveys was quickly put to use. The National Council on Disability—then a small, independent agency reporting to the president—relied heavily on SIPP and the National Center for Health Statistics’ National Health Interview Survey data to produce two influential reports: Toward Independence (1986) and On the Threshold of Independence (1988).
These reports painted a troubling picture. At the time, only about one-third of working-age adults with disabilities were employed, compared to nearly three-quarters of those without disabilities. Disabled Americans were twice as likely to live in poverty and far more likely to rely on public assistance. Many disabled adults reported in the surveys that they wanted to work but were blocked by both physical barriers and discriminatory attitudes.
The data gave disability rights advocates and lawmakers a powerful tool: credible, national estimates of how many Americans lacked equal access to basic parts of American life—education, jobs, housing, transportation, and public information. The official statistics gave weight to the advocates’ moral argument with empirical evidence.
In the months before the ADA passed, momentum swelled. Advocates flooded congressional offices with letters and phone calls. Legal details were debated in hearings. And in one now-iconic protest, dozens of disability activists—many of whom used wheelchairs—crawled up the steps of the US Capitol to show, rather literally, how inaccessible the world still was.
In July 1990, the Americans with Disabilities Act passed with overwhelming bipartisan support. It prohibited discrimination in employment, government programs, and places of public accommodation. At the signing ceremony, President George H.W. Bush said the ADA “represents the full flowering of our democratic principles” and promised it would “guarantee fair and just access to the fruits of American life, which we all must be able to enjoy.”
The work didn’t stop there. In the decades since, statisticians and survey methodologists have continued to refine how disability is measured, addressing challenges such as capturing invisible disabilities, improving survey accessibility, and ensuring people with disabilities are accurately represented in federal data.
Today, thanks in part to the ADA, the landscape for people with disabilities has changed: Access has improved, legal protections are stronger, and acceptance of disabilities is at an all-time high. Although much work remains, these hard-won changes rest on the foundations built by data and statistics.
Regina Nuzzo
Nuzzo is a professor of statistics at Gallaudet University in Washington DC, a liberal arts school for deaf and hard-of-hearing students. She also authors articles about the importance of statistical and science communication and is an advocate for people with disabilities in the science and technology field.
The Justice, Equity, Diversity, and Inclusion (JEDI) Outreach Group Corner is a regular component of Amstat News in which statisticians write about and educate our community about JEDI-related matters. If you have an idea or article for the column, email the JEDI Corner manager at jedicorner@datascijedi.org.
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