A few years after the passage of the Americans with Disabilities Act (ADA), I was attending a music festival in the river market district of Little Rock, Arkansas. Being the kind of person who talks to every single person he meets, I was talking with this one particular gentleman who remarked that he had been seeing a lot of “you people” lately [meaning people with disabilities], and asked “was there more of us?” I told him; well maybe…with the population increasing, people living longer and advances in medicine, but it could be that the Americans with Disabilities Act could be providing opportunities to be out and about that didn’t exist just a few years earlier. He nodded in agreement and said it was nice that we had this special law for people like me (I happen to be a wheelchair user).
Sometimes it can be tough to describe the complexities of civil rights law to someone who has no point of reference. I tried to explain my position in a way that he might identify. I told him that the ADA didn’t provide me with anything special. I’m just a regular guy who likes to hang out with friends and enjoy all the local watering holes and that the ADA just gives me access to the same crappy service he gets. He nodded in agreement and said, “I know just the place.”
When George HW Bush signed the Americans with Disabilities Act (ADA) into law, he said “Let the shameful wall of exclusion finally come tumbling down.” When most people think about the ADA they think about the built environment — and they are right, to an extent. Even so, the ADA is much broader than wheelchair ramps and big stalls in the bathrooms (which apparently everyone loves). It provides civil rights protections in employment, access to State and local government services, public accommodations, telecommunications and other miscellaneous provisions. At its core is what every person with a disability strives for and that is to be a contributing member of their community. Though this is the core value of the ADA, this protection is not realized in law until the Olmstead Decision almost 9 years later.
For more than 100 years, individuals with disabilities have had to deal with an institutional bias when accessing care. Even in programs like Medicaid – created in 1965 – nursing facility care is part of the program “mandate.” Before the ADA, the Rehabilitation Act, and the Olmstead Decision, being labeled as a person with a disability often meant being institutionalized or shipped off to a hospital away from your friends, family and community – regardless of your disability type or resources to live independently. This created a culture in which far too many people with disabilities never had the opportunity to live in the place of their choice. This led to a societal belief that people with disabilities needed to be sent away and made it easy for so many people to be out of sight and out of mind. When the modern disability movement was getting underway, disability advocates had to think about how to create a society that was inclusive of people with disabilities. The passage of the ADA was a key step in creating communities that have all of the elements of access in place, but how do you address the idea that people with disabilities have the right to live in the community of their choosing – to be present? This point has been on the hearts and minds of disability advocates for years, but finally 9 years after the passage of the ADA there was a decision that held the key to opening the door to the community.
It took almost a decade, but On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act. The Supreme Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
This ruling was monumental. It upheld the belief that everyone had the right to life, liberty and the pursuit of happiness, but more importantly held that if people could receive care and support in their communities, and did not want to be sent away, then they had a right to stay AND receive the care they wanted. This finally created a community in which individuals with disabilities are expected to be a key part, and helps to make the growing populations of Americans with disabilities at the store, at work and in their communities, permanent fixtures.
This month we will celebrate the 21st anniversary of the Olmstead decision. While the decision was a landmark ruling at its inception, what does it mean 21 years later and what is its effect on a generation entering adulthood? For many people with disabilities, while the Olmstead decision is a key part of freedoms in theory, in implementation it isn’t enough.
After 30 years, you would think that the values of the ADA would be firmly entrenched in all segments of our society and the Olmstead Decision would be the standard for how people with disabilities interact and live in their communities. Sadly, this not the case. People are still warehoused away in congregate settings and it seems that Congress continually tries to weaken or undo portions of the ADA. One of the latest attempts was the ADA Notification Act (HR620) which would require a person with a disability to give a business owner 60 days’ notice that they intended to bring legal action due to lack of access. Then the business owner would have 120 days to “begin” to fix the problem. (Who knew 30 years advance notice would not be sufficient?)
People with disabilities are still kept out of sight and out of mind in congregate settings that deny them their basic rights. While there is still much work to be done, the Olmstead Decision remains the standard toward which we continue to reach for freedom and inclusion for all individuals in our society. When I say “all” I don’t just mean the people that you immediately think of when you hear the word “disability.” In 2018, the CDC estimates that 1 in 4 Americans have a disability. That is over 60 million people. This is no longer an “us vs. them” scenario. We are all in this together. There are organizations all across this great country that dedicate all of their time and energy to ensuring that the civil and human rights of people with disabilities are not ignored. Advocates have continued to work tirelessly to ensure that the realities of the Olmstead decision can be recognized and that people with disabilities can choose to live in the setting of their choice.
There is still a tremendous amount of work to be done and if you’d like to help, I know just the place.