By Jeremy Gruber

This special issue of GeneWatch magazine is dedicated to the memory of Paul Steven Miller (1961-2010), who recently passed away from cancer at the young age of 49. Paul was a friend and advisor to the Council for Responsible Genetics, a tireless advocate for disability rights and a great humanitarian. During the course of an extraordinary and highly successful career, Paul fought against those who judge people on how they look or their gender, race, age, or nationality.

Paul was born in Flushing, NY with the genetic condition achondroplasia, a type of dwarfism. Paul never let his condition define him or his accomplishments, though. He went on to graduate at the top of his class at the University of Pennsylvania and then Harvard Law School. Despite his academic achievements, he received 45 rejection letters from small-minded law firms before finding a position with Manatt Phelps in Los Angeles (Paul's work at the firm would become the inspiration for the character Hamilton Schuyler on the series L.A. Law). 

Paul went on to become Director of Litigation for the Western Law Center for Disability Rights, a leader of Little People of America, and then Deputy Director of the U.S. Office of Consumer Affairs. An appointment as White House liaison to the disability community followed, a position Paul held under both the Clinton and Obama administrations, and which he used to help recruit individuals with disabilities to take positions all over both administrations. "I felt compelled to do something more meaningful with my career that would have an impact," he said in a 2004 interview.

And have an impact he did. Paul was instrumental in helping write the Americans with Disabilities Act, the landmark civil rights law which marked its 20th anniversary several months ago. In his own words:

I think the reality for students with disabilities, for professionals with disabilities, is dramatically different today than it was a scant 15,18 years ago ... I think that's attributable to the ADA, to an education process that employers have begun to journey down ... It has made America stronger, because it forces employers to focus more on people's qualifications than on stereotypes about that individual's disability.

In 1994 President Clinton appointed Paul to be a commissioner of the Equal Employment Opportunity Commission where he worked for ten years, becoming one of the longest serving Commissioners in the history of the Commission. As Commissioner, Paul spent much of his time on developing ADA enforcement. He successfully spearheaded efforts to improve the agency's legendary backlog through mediation and became the agency's most visible spokesperson against all types of discrimination, particularly on behalf of people with disabilities, reaching out to people all over the United States and the world, educating them, encouraging them to use the system, and as a result improving the lives of millions.

Paul was a member of the HHS Secretary's Advisory Committee on Genetics, Health and Society. Noting gaps in the ADA, Paul became an early champion of genetic nondiscrimination legislation and frequently wrote on the topic. It was in this vein that I came to know Paul as we worked together for over 15 years on the successful passage of what would become the Genetic Information Nondiscrimination Act. Paul was a true genius on disability and employment discrimination law and a force of nature on any issue he worked on. He helped settle the EEOC's first court action against genetic testing in the workplace and led the drafting of the Presidential Executive Order on Genetic Discrimination and Privacy which created the first legal protections against genetic discrimination for Federal employees. That same year, in testimony before the U.S. Senate, Paul declared:

In this country, people should be judged based upon their abilities, and not based upon fears, myths, or stereotypes. Yet, with the expansion of genetic information available to employers, there is a risk that employers will misinterpret and misuse genetic test results to weed out persons according to their perceived health risks based on genetic information. Furthermore, people may refuse to take genetic tests, a potentially life-      saving measure, out of fear that employers may discriminate against them. For these reasons, genetic information does not belong in the workplace.

Paul left the EEOC in 2004 to become the Henry M. Jackson Professor of Law at the University of Washington School of Law from which he took a temporary leave to serve as Special Assistant to the President in the first year of the Obama administration where he managed Presidential appointments and nominations. In his final years he focused on tensions between disability rights and genetic science. In a paper titled "Avoiding Genetic Genocide," Paul criticized scientists for what he saw as their eagerness to use genetics to produce "perfect" humans. He wrote:

Good health is not the absence of a disability. Scientists caught up in the excitement of genetic discovery can forget that life with a disability can still be a rich and fulfilling life.

As his wife, Jenni, recounted at his recent memorial service in Washington D.C., Paul had the "golden rolodex." But unlike most well connected persons, Paul built friendships from the most distinguished of colleagues to the least and everyone in between. Moreover he went out of his way to give of his time to everyone he knew. And he did it all with an incredible wit and sense of humor. In his final year, when cancer treatments required his arm to be amputated, Paul joked that he was the only one-armed Jewish dwarf to ever serve in the White House.

In a statement released shortly after his passing, President Obama declared about Paul Miller:

More important than any title or position was the work that drove him. He dedicated his life to a world more fair and more equal, and an America where all are free to pursue their full measure of happiness, and all of us are better off for it.

Paul was a giant to everyone who knew him and he will be sorely missed. Our best wishes go out to his wife Jenni and daughters Naomi and Delia.

Jeremy Gruber is President and Executive Director of CRG.

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The purpose of the Genetic Bill of Rights is to introduce a global dialogue on the fundamental values that have been put at risk by new applications of genetics.
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Genetic Testing, Privacy and Discrimination
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