This past Sunday marked the 25th anniversary of the Americans with Disabilities Act (or ADA). Enacted with broad bipartisan support, the ADA was the first (and last) significant piece of human rights legislation passed in the US since the landmark Civil Rights Act of 1964.
In many ways, the ADA mirrored the protections granted with the Civil Rights Act by outlawing discrimination based on physical or mental disability. Employers covered by the ADA cannot fire or refuse to hire someone based on a real or perceived disability. They are also required provide reasonable accommodations to job applicants and employees with disabilities, unless doing so would require considerable difficulty or expense. An employer might be required to provide a screen reader that uses a speech synthesizer or braille display to allow a blind or visually impaired worker to read text on a computer screen. They are not required, however, to hire a physically disabled worker for a position that requires a significant level of manual labor, such as stocking shelves in a warehouse.
Unlike the Civil Rights Act of 1964, the ADA also mandated significant changes in the physical environment in which all Americans currently live and work. Under Title III of the ADA, any building completed after January 1993 must be designed so as to be accessible to those with physical disabilities. Doorways must be wide enough to accommodate wheelchairs, bathrooms must have grab bars and sinks that can be used by someone in a wheelchair, elevators must have braille numbers for those with impaired vision, and a certain number of parking spaces must be set aside for those with disabilities. Buildings renovated after that time must also be made as ADA compliant as is "readily achievable."
As anyone who has travelled overseas can attest (particularly those travelers with physical limitations), the environmental and cultural changes wrought by the ADA over the past twenty-five years have allowed those with disabilities to participate in American civil society at a level unmatched by any other country. Despite this, the nearly one-in-five Americans currently living with a disability still haven't achieved what disability rights activist Jacobus tenBroek called "the basic right to live in the world.”
Consider, for example, the issue of employment. According to the US Bureau of Labor Statistics, the unemployment rate for those with disabilities is 15%, almost three times the national average despite the ADA's antidiscrimination requirements and despite tax incentives to encourage employers to hire disabled workers. In fact, nearly two-thirds of working-age people with disabilities remain out of the work force, sometimes by choice but often because they cannot find jobs. This level of unemployment that has remained unchanged since the passage of the ADA in 1990.
Compounding and perpetuating this problem is that fact that the educational needs of those living with disabilities often go unmet, creating an undereducated class of children and young adults with few marketable job skills. A piece of legislation separate from the ADA -- the Individuals with Disabilities Education Act (IDEA) -- was designed to combat this by ensuring that all children with disabilities receive free public education that is tailored to their individual needs. Despite this, disabled children are often seen as a burden or strain on our already overtaxed and underfunded public school system. Outside of special education programs, few teachers receive any formal training on how to educate disabled students. Moreover, there is a nationwide shortage in special education teachers and turnover among these highly trained educators is high. As a result, disabled students are rarely mainstreamed but instead remain segregated in overcrowded self-contained classrooms or even in separate schools, with limited access to the academic services and extracurricular activities provided to other students.
Finally, despite the increased public visibility of those with disabilities, overt and covert stigma and discrimination (particularly against those living with a mental illness) still remains a pervasive problem. Those of us with disabled friends have heard the many stories of how cab drivers refuse to pick them up, hotels turn them away because of a lack of handicap-accessible rooms, or store clerks dismissively treat them as though they were mentally incapacitated. News reports, television shows and so-called reality programs often strive to present those living with a physical disability as brave and inspirational people. But instead than raising awareness of the struggles that the physically or mentally disabled face, these stories most often inspire feelings of pity or relief (that unvoiced thought of "I'm glad that's not me."). Worse yet, those living with mental illness or other intellectual disabilities are often present as comic relief, as with so-called "Crazy Ashley" on the last season of the sad reality show The Bachelor.
The twenty-fifth anniversary of the Americans with Disabilities Act is something we should all celebrate, while still looking for ways to improve the way that our society treats those living with disabilities. What too many people fail to realize is that nearly all of us will be disabled at some point in our lives, by injury, illness or simply because we have got older. The antidiscrimination and public accommodation requirements of ADA the benefit us all, and we need to stop treating those living with disabilities as people who are a burden on society. They do not need to be pitied, to be coddled, or to be neglected. Rather, they need to be seen as productive and valued members of society. They are our neighbors, our coworkers, our friends, our family ... they are us and we are they.
A public health researcher and ethicist by training, Dr. Sean Philpott-Jones is Director of the Bioethics Program at Union Graduate College-Icahn School of Medicine at Mount Sinai in Schenectady, New York. He is also Director of Union Graduate College's Center for Bioethics and Clinical Leadership, and Project Director of its two NIH-funded research ethics training programs in Central and Eastern Europe and in the Caribbean Basin.
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