Strange as it may seem I am going to begin this afterword with a post-script. As I always do, I sent a draft of this afterward to Mary Lou Breslin for advice. Her comment to me prompts my departure from form. She said, “I have never heard you sound so pessimistic.” Mary Lou’s comment made me realize how much I have been shaken by negative decisions in the U.S. Supreme Court. I am, indeed, pessimistic about the Court. But I remain wide-eyed and bushy-tailed about the power of the international disability rights movement to make profound changes in not only the way society is structured but in the hearts and minds of people everywhere. The Court’s regressive rulings are a big bump in the road to realization of the ADA‘s promise, but the dedication and power of the movement will not be halted. That said, let me begin.
At the end of my article for this book, The ADA and Models of Equality, I wrote that the world was awaiting the U.S. Supreme Court’s decision in Board of Trustees of Univ. of Alabama v. Garrett, 531 U.S. 356 (2001), the first pronouncement about the Americans with Disabilities Act’s (ADA) constitutional underpinnings. Would the Court recognize that the ADA was enacted to give people with disabilities the equal protection of the law, a protection that our country touts as fundamental to our values as a nation? Could people with disabilities successfully build on the civil rights paradigms established for minorities and women? I regret to inform the world that our Supreme Court just does not understand or accept that people with disabilities have a sor-did history of state-sponsored persecution, segregation and discrimination in every aspect of civil society, or that Congress had the right to remedy this history in the ADA by applying the law’s mandate to states. (Garrett only addressed the constitutionality of applying the ADA to State governments. All other applications are intact). It is true that the “state’s rights” agenda of the conservative majority of the court is far reaching and goes beyond its decisions on disability. If the Garrett case was simply one more decision in this regressive trend, it would not say much about our struggle to have the segregation and exclusion of people with disabilities seen through the civil rights lens. But the Court’s decision exposes a much more sinister outlook. The Court’s failure to recognize the basic premises of the ADA is revealed throughout the decision. For example, the decision explains that the ADA goes far beyond the equal protection guarantee with this example: “whereas it would be entirely rational (and therefore constitutional) for a state employer to conserve scarce financial resources by hiring employees who are able to use existing facilities, the ADA requires employers to ‘make existing facilities used by employees readily accessible to and usable by individuals with disabilities.'” Garrett at 372. There really is no way to put a good interpretive spin on the Garrett case. It is deeply troublesome because it rejects the central underpinning of the disability rights as civil rights argument – that equal treatment is not equality. Garrett reveals a “let them eat cake” mentality not only in its dismissal of real life experience but also in its callousness.
I wish I could report that Garrett is the only bad news from the U.S. Supreme Court, but it is not. It seems that every month there is a new blow. As recently as June, 2002, the Court held in Chevron U.S.A. Inc.v. Echazabal, 122 S.Ct. 2045 (2002), that the ADA does not prohibit an employer from firing or refusing to hire a disabled person “for his own good.” An employer can decide that the work environment is too risky even if the disabled person can do the job and wants to take the risk. This decision ignores the ADA‘s legislative history, which emphasized both the importance of self-determination and the invidiousness of paternalism. Those of us that were involved in the drafting and negotiating of the ADA have been shell shocked by these decisions. How could the Court get it so wrong? Or what could we have done to foresee and prevent these decisions that ignore the social-civil rights model of disability which we were confident that we were creating? The Court lags far behind this new consciousness, still seeing disability in medical-charity terms.
So why speak at length about the U.S. Supreme Court when there is so much else happening around the world? When we started to conceive the amazing symposium that generated the papers in this book, we were just starting to get bad decisions on the definition of disability in the ADA. At the same time we were getting visitors from around the world who were using the ADA as a model, a beacon of progressive thinking. We felt an urgency to communicate to our compatriots from around the word what we had learned from our experience with the courts. We wanted to avert, as best we could, the development of new laws that may have the same implementation problems that we have had to face. We thought a symposium was the best way to get the word out to a lot of people from many countries at once. As the planning progressed, it was clear that there were many lessons learned around the world that needed to be shared. During the symposium it became vividly clear that through sharing our experiences, both triumphant and disappointing, we can learn more about how to advance our common cause. The questions are deep and perplexing. Can you have a social safety net and civil rights simultaneously? Can you argue that everyone can work if given the chance and maintain financial benefits for those that are job-less because of disability? Can you keep a protected class concept and still have an expansive definition of disability? Is there a workable definition of disability that does not carry the limiting connotations of the medical model? Are new words necessary? How do we communicate that disability is a social construct having little to do with the impairment of the individual? Should we be pragmatic or idealistic about demands for accommodations? I know that U.S. activists and advocates are asking all of these questions. We learned a lot from our colleagues from around the world at the symposium and continue to thrive on those interactions.
The image of the world that we are trying to create is not fully developed but tremendous headway has been made. At the same time that we see interpretive erosion by the courts, there has been a burgeoning awareness of, and change in attitude about, people with disabilities.
Being disabled now is a different experience than before the ADA. Ask any person who uses a wheelchair if the ADA has made a difference in their lives and I think you will hear “yes.” As my friends and colleagues who use wheelchairs will be the first to tell you, the ability to use a restroom should never be underestimated. Ask a deaf per-son what it is like to have a national telecommunications relay system. Ask any school child, employer or owner of a public accommodation if they are aware that people with disabilities are part of our communities, and the answer now is far more likely to be “yes” than before the ADA was enacted . People with highly stigmatized disabilities like mental illness are starting to discuss their disabilities and organize more openly.
The executive director of the American Association of People with Disabilities is a person with bi-polar disorder, representing a new awareness of psychiatric illnesses among people with disabilities as well. The ADA has helped spring a revolution in technology with talking Automated Teller Machines, accessible voting equipment and low floor buses as just a few examples. I also think that the growing recognition of disability as a legitimate area of study in the academy is nurtured by this new aware-ness, and with that comes a new intellectual environment which will elevate disability issues that were at best marginal before the ADA.
I can not even explain the exhilaration that I felt at the international symposium when I heard about the 48 disability rights laws enacted around the word since the passage of the ADA. The ADA is an international word, and disability rights is an international force. As is evident from this book and the many knowledgeable, dedicated, dynamic participants at the conference, our momentum is unstoppable. Societies have and will continue to be transformed. But to build the future and beat the set backs we need each other. Thank you all for being part of this future.
Arlene Mayerson
Berkeley, California
June 2002