The institutionalization, marginalization, and oppression of individuals with mental and physical disabilities are as old as recorded history. The fear, shame, and lack of understanding that have accompanied many disabilities have led to the killing, isolation and mistreatment of disabled people in many, if not most, societies. Whether disabilities were seen as “unclean,” or as a sign of being out of favor with God, or the person was thought to be possessed or inhabited by a demon or satanic spirit, there has almost never been a positive cause ascribed to physical or mental disability. I say “almost never,” because there are a few outlying circumstances where epilepsy, for example, is seen in some cultures as someone who is graced with advanced powers of spiritual knowledge. However, for most of history, having a physical or mental disability meant being condemned to a life of extreme stigmatization, hardship and death.
The 20th century saw these trends begin to change. As we began to experience developments in medicine and psychiatry, as veterans began returning home from wars with permanent injuries, as we came to understand theories of evolution that included the function of mutation and biological diversity, our opinions of disability started to shift. As the women’s rights and civil rights movements transformed society in the 1960s, we began to realize a revolution in thinking was also needed about disability. In this context, the social model of disability was born.
The social model of disability was generated in contrast to the medical model of disability. The medical model says that when something is wrong with the body or mind it is an impairment or pathology, therefore, it is not functional, the ideal state is non-disabled, and an outside force should help work to “fix” or cure the “broken” state of the disabled person. The social or human rights model of disability acknowledges, that yes, impairments in the body and mind do occur but that disability occurs because of the external disadvantages society creates in the management or handling of a person’s impairments through attitudes, systems, structures, and beliefs. People who experience disability have the same intrinsic worth and value as all other humans.
It isn’t my being in a wheelchair that’s so disabling, it’s your lack of ramps.
My Deafness isn’t a disability, it is that you don’t know sign language or caption the movies.
My disability isn’t that I have dyslexia, it’s that you don’t provide alternate formats.
My disability isn’t my schizophrenia so much as your attitude about psychological differences.
This was the context for the Americans With Disabilities Act. On July 26, 1990, after the urging of the National Council of Disability, building on legislation like 1973’s section 504 of the Rehabilitation Act and the Civil Rights Act of 1964, the ADA was passed and signed into law at the White House by George H. W. Bush. In the end, it took a huge coalition, grassroots organizing, teams of attorneys, and many individuals writing in with stories of discrimination in “disability diaries,” to raise the consciousness of the 101st Congress about the injustice and intolerance faced by folks living with disabilities. With its passage, for the first time in the world’s history, U.S. law required access for people with disabilities. This was revolutionary! The ADA has transforming the access people with disabilities have to transportation, housing, education, employment, public and private spaces.
As a queer woman with multiple disabling conditions, the ADA ensures that I get access to door-to-door rides to medical appointments (although the system is imperfect and requires a lot of patience), because I can’t make it to the closest bus stop myself. It also means I can’t be discriminated against on the basis of my disability. When I was working, I disclosed my disabilities to my employer. Not only did HR have to keep that information confidential (only looping in essential personnel) but they had to provide accommodations to make my workplace accessible. In my case that meant things like swapping out fluorescent light bulbs in my workspace, changing my chair, and providing me the flexibility to make it to scheduled doctors’ appointments during work hours.
I’ve also had the opportunity to work with disabled men and women, activists from around the world, who have traveled here to learn about the ADA, to learn how to lobby, how to write laws and policy to bring back to their home countries and shape the way disability legislation is created. From working with them over the years, I’ve found that here are some things we got right.
1) The ADA was born of grassroots, first-person, broad coalition-based organizing. It really was the best of democracy in the making. Restaurant trade associations were afraid that with the passage of the ADA it would be illegal to discriminate against hiring folks in the kitchen and waitstaff who they suspected were HIV positive. It would have been easy for activists to ignore the rights of those with HIV/AIDS. However, leaders across-disability banded together to ensure that no group was left out.
2) The ADA states that accessibility should be a “reasonable accommodation.” Written this way, the law means (in part) that mom and pop shop operations shouldn’t be put out of business trying to retrofit their whole stores to accommodate the needs of one of only one employee if they only employ a handful of people and the changes would represent an undue hardship. However, a large corporation can’t get out of providing a “reasonable accommodation” based on having a multitude of employees and the cost being negligible to them. This means that those who can pay for accommodations must pay for accommodations.
We’ve also lived with the law long enough to know and fix some of its shortcomings. After 18 years of Supreme Court decisions, the definition of disability had gradually shifted; the scope of what it meant to qualify as someone with a disability had narrowed precipitously. In 2008 the ADAAA was passed by to help change some of this and other parameters. The new definitions of “disability” are more broad and clear, which means that more people are now covered under the ADAAA. Additionally, courts are instructed to give preference to whether or not a covered entity (employer, transportation provider, landlord, etc.) behaved in a way that was discriminatory rather than focusing on whether the person filing meets the specific criteria for disability. This shift in focus means these cases are first being judged on their merit under civil rights violations, then being evaluated on the basis of disability discrimination.
Where do we go from here? There is always more work to be done. One of the ways the ADA falls short for many is the idea of rights without recourse. While there are these rights and protections, there isn’t a clear enforcement agency to ensure compliance with the law. There are oversight bodies in some areas the law covers, but when it comes to checks and balances – there really aren’t any. In most cases, there is no one to step in and tell when your rights are being violated without bringing a lawsuit. As you can imagine, for the most oppressed and disenfranchised, bringing a suit is simply out of reach.
For the law to work most effectively, we need oversight and enforcement. We need reporting agencies we can go to with complaints, who will track violations, follow up on them and determine whether or not a violation has happened. We need standards for compliance that offer clear benchmarks for people to follow up on what has been done by when. When entities are in violation, they need consequences big enough to incentivize compliance. Without such checks and balances, only those with the money and time to sue are able to pursue retroactive justice.
While the ADA was the first civil rights and protection law for people with disabilities in the world, that has changed. By last count, more than 181 countries have adopted disability rights laws inspired by the ADA. What a revolution! What began as a grassroots effort here has impacted so much of the globe. When we wonder if our words have power, or if a few of us working towards something can make a difference, the ADA can remind us of what Margaret Meade knew: that “a small thoughtful group of committed people can change the world.”