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I. Ain’t No Mountain High Enough
Twenty years ago this past spring, a group of ADAPT activists demonstrated the need for the passage of the ADA by abandoning their wheelchairs at the foot of the United States Capitol and crawling up the steps that, at the time, afforded the only means of access to the legislative branch of the U.S. government. This action, which is now an iconic part of U.S. civil rights history, was just one of a series of protests the group organized that week in D.C. As with previous civil rights movements, protesters were arrested for acts of civil disobedience; unlike scenes typical to earlier movements, however, the authorities had trouble carrying out their law enforcement obligations. At the time, few court houses, jail cells, or even elevators were accessible to law-breakers with disabilities.
Inside the Capitol, one lawmaker who championed the bill also found a creative—albeit legal—means to illustrate a similar point. During a critical hour, Senator Harkin (D-Iowa) stood up in the well of the Senate to testify on the need for the ADA. He did so eloquently and for more than ten minutes, and he did so entirely using manual signs (Sen. Harkin's brother is deaf). MRC Commissioner Charles Carr was in D.C. that week. Then a vice president of the National Council for Independent Living (NCIL), he oversaw NCIL's legislative committee, "When Tom Harkin testified you could hear a pin drop," Carr reminisced during an interview with MassMATCH News in June. "And then he stopped and said, 'Now you know what it's like to not understand a single thing that's being discussed like a deaf person does when they don't have access to a sign language interpreter.' It was a stunning moment."
II. Generation ADA
The ADA was signed into law by President George H. W. Bush on July 26th, 1990. The landmark civil rights act prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications. To some the law evokes little more than curb cuts, empty parking spaces, and cumbersome and costly law suits. To others, particularly those individuals with disabilities whose lives have spanned beyond the last quarter century, the ADA demarcates the start of a shift in consciousness for an entire nation. "Gone are the days of out of sight, out of mind" Carr and others have said.
The ADA brought us the term "reasonable accommodation," providing, for the first time, a standard of fairness for equal access to American society for people with disabilities. The ADA was not the first law of importance for disability rights in the United States, but for Americans with disabilities, it is comprehensive civil rights legislation analogous to what brought down Jim Crow laws, the Civil Rights Act of 1964.
"When I was a kid coming up, I had no expectations that I could go to a restaurant and that it would be accessible, not at all," Carr reflects. "Go to see a movie, go anywhere! You never ever expected it. If you were smart you'd call first. And even if you called they'd say, Oh yeah, yeah, yeah, and of course it wasn't. And there was a network and so you knew, through the network, yeah, here's an accessible place."
These days, expectations are different; people with disabilities are out of the closet and sitting up at the lunch counter (to continue the movement analogies). "It's 20 years later," Carr notes, "and now we have this ADA generation, this generation with a whole set of expectations I didn't have, and who will help carry through the culture shift."
III. Generation AT
This generation stands on the shoulders of those who advocated not only for the ADA, but also those who worked for Section 504 of the Rehabilitation Act in 1973 (the first anti-discrimination law based on disability), the Education for All Handicapped Children Act in 1975 (which became the Individuals with Disabilities Education Act in 1990), the Technology-Related Assistance Act (Tech Act) of 1988 (which became the AT Act in 1998), and they are beneficiaries, too, of the present-day technology revolution that, in many cases, is now transforming what it means to live with a disability.
"The expectation around access drove the marketplace, and it drove AT. When I was newly disabled in the late 60s there were no power wheelchairs and there was no voice recognition software, any of that kind of stuff, and it was very slow to develop, it was costly, there was no payment mechanism, the demand was low, but as we came up to the ADA and post ADA, the market forces exploded and you saw incredible advances in assistive technology."
Attorney Robert "Bobby" Silverstein was there for this history, too, and helped create those market forces. Working with Sen. Harkin, Silverstein is touted as the behind-the-scenes architect of the ADA and numerous other disability laws (including the Tech Act). He spoke to MassMATCH News in June, "After we passed the ADA, to me it became critical to provide an infrastructure for covered entities […] and to set up a finance system to make sure that Medicaid and insurance policies accepted and paid for and recognized the importance of assistive technology."
Today, thanks in part to such laws, systems, regulations, and enforcement, AT innovation has indeed exploded, aiding the ADA-driven integration of people with disabilities into community living (and out of institutions) and making quality employment opportunities a possibility. Environmental control systems, power wheelchairs, screen readers, sip and puff systems, voice recognition and eye tracking software, mouse emulators and virtual keyboards, the list keeps growing.
IV. Urgency of Now
Now the concern is, given the poor economy and reality of shrinking public funds, will this and future ADA generations effectively access existing and newly emerging technologies? Will there be a generation AT?
Silverstein sounds cautiously optimistic. He notes that the final health reform bill (signed into law this past March) includes an essential benefits package, a package which—depending on how it is interpreted—could include AT. "We'll see what happens, but built into [that] package is the requirement to include rehabilitative and habilitative services and devices. So part of the advocacy, now, is to try to maximize the likelihood that those devices, assistive technology devices, are recognized..." The benefits must be provided by 2014 for private plans to participate in the new Health Insurance Exchange. "It's an opportunity for advocacy," he emphasizes.
His second reason for optimism concerns web accessibility, currently a frustrating issue for the disabilities community. While mainstream society is increasingly an online affair (from commerce to education to even the ability to apply for employment), inaccessible websites, social media, and devices threaten to shut out individuals who otherwise have the most to gain. Silverstein points, however, to the unequivocal statements made in April by Samuel R. Bagenstos, the principal deputy assistant attorney general for civil rights at the Department of Justice. Among them is this: "The broad mandate of the ADA to provide an equal opportunity for individuals with disabilities to participate in and benefit from all aspects of American civic and economic life will be served in today's technologically advanced society only if it is clear to businesses, employers, and educators, among others, that their web sites must be accessible."
V. A Journey of a Thousand Miles (begins with a hot day in July)
Of course there's more to achieving equal opportunity than effective access to technology. As Carr readily acknowledges, "The unfulfilled promise of the ADA remains employment." But here Carr also sees reasons for optimism. In the big picture, he reports that more employers are including people with disabilities in their diversity plans, more are learning that accommodations are largely affordable and effective, and more young adults with disabilities are successfully preparing for and expecting to go to work. "I see, in this position that I have now, a real culture shift happening. I see more and more people with really significant disabilities getting decent jobs."
Even still there are many who feel the ADA has not done enough to level the playing field. And, Carr reflects, that's how it is with civil rights. "[Listen to African Americans talk about it and] you hear all levels of disappointment and happiness. And that's more than 40 years later! So no, you don't undo a legacy of discrimination in 20 years."
Indeed, Carr remembers when it hit him how long equality would take. He was sitting on the east lawn of the White House on July 26th, 1990, privileged to witness the signing of the ADA. "It was this incredibly hot day and the White House people were out there giving us cold lemonade because we were dropping like flies. And I remember a bunch of us going to sit under a tree to get some shade and […] we were sitting there, and I'm practically half-dead from the heat, and as soon as the bill signing was over they were hustling us off the lawn, 'Alright, get outta here, show's over!' And I was like, Oh great! Here we just got this monumental civil rights law passed and we're being ushered away. So at that point I remember thinking, we've just begun. It's just the absolute beginning."