When I entered Notre Dame in 1966, I was one of a few students with an observable disability. Polio had left me as a 1-year-old with restricted use and diminished size of my right arm and shoulder. Still, I knew nothing about the legal rights of people with disabilities and had only personal insights into the way society treated us. That was to change in a major way, as Notre Dame would play a pivotal part in the disability legal rights movement and I would become a key agent in the Americans with Disabilities Act.
The University’s crucial role began with a seemingly random dinner conversation in the fall of 1971. Then law students at Notre Dame, my fiancée Marcia Pearce ’72J.D. and I were invited by Lyn Leone ’74M.A., an alumna of Saint Mary’s College and graduate student at Notre Dame, to dinner at her house, about three blocks from campus. During the evening, I mentioned that I was seeking a worthwhile project I could put my aspiring legal skills to work on while taking a break from the academic routine of law school. Lyn told us about a lawyer friend of hers who had visited mental health institutions to see if he could identify any residents who did not belong there. When he did, he used the legal process to try to get them out.
I thought this sounded like a great project for a group of law students, so I talked to several friends who were interested. My next step was to find a professor to supervise us.
The faculty member I asked — Charles W. Murdock — was an unlikely choice, as he was a business and corporate law specialist. But “Bud” Murdock had impressed me as a down-to-earth guy — smart and knowledgeable but also pragmatic and personable. My concern that he might be reluctant to get involved with an issue far outside his area of expertise was quickly dispelled when he said my coming to him was a fortunate coincidence. He had recently played tennis with a professor in Notre Dame’s biology department, Harvey Bender, and Bender mentioned that he was the vice president of the board of directors of the Council for the Retarded of St. Joseph County (eventually renamed Logan Community Resources), and the agency was exploring establishing a legal advocacy program. Murdock said maybe we should meet with the council and talk about whether we could collaborate on an advocacy project.
Understanding the significance of the disability rights movement requires an appreciation of the hardships people with disabilities once faced when it was not illegal to discriminate against them on the basis of their disability. It seems unthinkable today that more than half of school-age children with disabilities were either excluded from the public schools or, if allowed to attend, were not provided even minimally adequate educational services.
Through the early 1970s, residential treatment programs for people with intellectual and mental disabilities were generally primitive, dangerous, overcrowded, unsanitary and inhumane, many described by critics as “snake pits,” “human warehouses,” “virtual prisons,” “hell-holes,” “medieval” and “barbaric.” Most public and private transportation systems made few, if any, accommodations for persons with physical disabilities, resulting in a transportation infrastructure that was almost unusable by those with mobility or visual impairments. Almost all government buildings, public monuments and parks, and stores and other private businesses were designed without any expectation that people with disabilities might want or need to use them, so flat or ramped entrances into buildings and curb cuts or ramps on sidewalks were rare.
Under state laws and court rulings, individuals with disabilities were routinely denied or restricted in rights that most members of our society routinely rely on, including the right to vote, obtain a driver’s license, enter the courts, hold public office or enter into contracts. Some were excluded from serving on juries, prohibited from marrying, involuntarily sterilized, and in some instances prohibited by ordinances from being seen on the public streets.
Other individuals with disabilities were subjected to deplorable medical experimentation or were denied lifesaving medical treatments routinely available to other patients.
Over the course of history, some plucky individuals with disabilities and their families had rocked boats and pushed back on discrimination inflicted upon them, once in a while even going to court to challenge certain laws and rules. But it was only during the early 1970s that such efforts began to gain momentum, and right at that time our Notre Dame group came together.
Finally, in the wee hours of the morning, somebody reportedly said, ‘What the hell — why don’t we start a National Center for Law and the Handicapped?!’ And that’s what they commenced to do.
In September of 1971, the executive director of the Council for the Retarded of St. Joseph County, Linden Thorn, invited representatives of the law school and other interested persons to a meeting at the council’s offices in the Logan Center, a short walk from the law school and now the location of Eddy Street Commons. The purpose of the meeting was “to develop a program of Legal Advocacy with the Notre Dame Law School which will have local, state and national impact.” Professor Murdock asked me to bring along interested students.
Five of us arrived at what we expected to be a small, informal get-together and found that it was a much bigger deal. The law school was represented not only by Murdock but also by Dean Thomas Shaffer ’61J.D. and Professor Charles Rice (our property teacher). The Council for the Retarded was represented by seven of its officers and staff. Among others attending was Charles “Chuck” Lennon Jr. ’61, ’62 M.A., who would later serve as executive director of the Notre Dame Alumni Association for 30 years.
Murdock declared that a legal advocacy program for people with intellectual disabilities would fit well into the clinical education aspect of the law school. He said law students could perform useful work in researching legislation and case law, drafting legislation and legal briefs and, under supervision, litigation. Dean Shaffer voiced his support, even suggesting that students should get academic credit for the work the program would entail. As both a Notre Dame faculty member and vice president of the council, Harvey Bender called the collaboration of the council and the University an “exciting prospect, since both are effective organizations capable of accomplishing significant things together.”
Attendees recommended that the council and law school jointly develop a formal proposal for establishing a legal advocacy program. Once that was agreed, we students and some of the law school faculty members left the meeting. But others stayed and began brainstorming the drafting of a concrete proposal — a discussion that went on well into the night.
The initial focus was on creating a project to provide advocacy for people with intellectual disabilities (called “mental retardation” at the time) in St. Joseph County. Then someone said it might be easier to get funding if the project served the whole state of Indiana. Later came the notion of expanding the focus from just intellectual disabilities to all types of mental and physical disabilities. Finally, in the wee hours of the morning, somebody reportedly said, “What the hell — why don’t we start a National Center for Law and the Handicapped?!” And that’s what they commenced to do.
It took another six months — until March of 1972 — to work out and submit a grant proposal to the U.S. Department of Health, Education and Welfare (HEW). The proposal provided that four organizations would co-sponsor the national center: Notre Dame, the Council for the Retarded of Saint Joseph County, the National Association for Retarded Children and the Family Law Section of the American Bar Association. During the 1972 spring semester, before the proposal was finalized, Murdock began teaching a course on Mental Retardation and the Law, one of the first such courses in the country. It provided a grounding in the basics of intellectual disabilities, and the legal theories and recent court decisions that might apply to establish the rights of people with such conditions.
Meanwhile, HEW had rejected the grant application, a secret that members of the council concealed from the ND students. Fortunately, that rejection was not the end of the matter.
Upon learning of the HEW rejection, the council turned for help to John Brademas, who represented Indiana’s Third District, which included the Notre Dame/South Bend area. Representative Brademas had taught political science at Saint Mary’s College, received an honorary degree from Notre Dame in 1969 and would later be named a University trustee. He had an interest and track record in disability and rehabilitation legislation, and would later sponsor landmark disability rights laws. Significantly, he was chair of the subcommittee that had oversight responsibilities for the operations and programs of HEW.
Upon hearing the council’s plea for assistance, Brademas called a news conference at his office in Washington, D.C., on June 30, 1972, and announced that HEW was making a grant award of $168,862 for the project. He declared: “The establishment of this National Center is a critical first step to increase governmental and public recognition of the rights of [people with disabilities].” Brademas’s action put HEW in the awkward position of choosing between calling the chair of its oversight subcommittee a liar or funding the project. HEW opted to make the grant award, providing joint funding from its Bureau of Education for the Handicapped and the Division of Developmental Disabilities. The congressman’s ploy was my introduction to the exercise of raw political power.
The day before Brademas made his grant funding announcement, Marcia and I were married. She had graduated from law school in May, and I still had another year to go. On July 30, 1972, after the HEW grant award was in process, Marcia applied for an attorney position with the new advocacy center, and in August the temporary project director of what was being called the National Center for Law and the Handicapped (NCLH) hired her as its temporary project attorney. Less than a month later the center’s board of directors convened its initial organizational meeting and made Marcia’s appointment permanent.
The National Center for Law and the Handicapped officially opened on September 1, 1972. The new agency took offices at 1235 N. Eddy Street, in the Logan Center building where the Council for the Retarded had its offices. One of its first orders of business was to hire student interns, an impressive group of lawyers-in-training who had the unique chance to become “instant experts.” Disability rights law was so new that with only a few weeks of effort a lawyer or law student could become familiar with all the relevant cases and legal theories. As one of those interns, I told people, in what was not a total exaggeration, that you could carry all the law about disability around in a single file folder.
At our first meeting we learned about “the PARC case” (Pennsylvania Association for Retarded Citizens v. Commonwealth of Pennsylvania), a statewide class action lawsuit filed in 1971 to establish rights to public education for children with intellectual disabilities. The federal district court in Pennsylvania approved a consent agreement recognizing that the plaintiff children had legal rights to a public school placement and to fair procedures for determining the placements and educational services they were entitled to. Someone also mentioned an Alabama lawsuit challenging terrible conditions at state residential institutions for people with mental health conditions and for those with intellectual disabilities.
After we went to work for NCLH, we obtained the legal papers from the PARC case and the decisions in the 1971 Alabama case, Wyatt v. Stickney. In _Wyatt, renowned civil rights judge Frank M. Johnson Jr. had ruled that conditions in the Alabama facilities were shockingly inhumane, and that depriving any citizen of liberty on the rationale that the confinement is for therapeutic reasons, and then failing to provide adequate treatment, violates due process. He issued detailed standards for care and habilitation for residents of the institution and ordered state officials to comply with them. The PARC and Wyatt cases were soon the talk of the disability community, but at NCLH we began to beat the bushes to identify other relevant lawsuits.
We learned that on August 1, 1972, a month before NCLH had opened its doors, the federal court for the District of Columbia had issued an important opinion in the case of Mills v. Board of Education of the District of Columbia. In that class action lawsuit, the court ruled that, under the U.S. Constitution and D.C. laws and regulations, children with disabilities were legally entitled to public education, and ordered D.C. education officials to “provide to each child of school age a free and suitable publicly-supported education regardless of the degree of the child’s mental, physical or emotional disability or impairment.”
As word spread about the PARC, Wyatt and Mills decisions, disability organizations around the country sought to jump on the litigation bandwagon. The result was an avalanche of lawsuits: In the next two years, we identified 130 court cases addressing various aspects of disability rights, and the National Center for Law and the Handicapped was in the center of the action. Within weeks of the center’s opening, we were involved in legal proceedings in six states and had made contacts with pertinent organizations in all 50 states. Equally significantly, the NCLH quickly began to take on its envisioned role as a coordination and backup center for disability rights litigation around the country. This involved keeping tabs on all the litigation that was underway, sharing information and approaches with those involved in or contemplating filing cases, developing links between experts and attorneys, spreading the word about the successful court cases through our newsletter, making presentations at conferences and workshops, and generally trying to maintain quality control in the litigation ferment.
It was scary, heady and fulfilling for those of us still in law school to be doing significant, innovative legal work. We were a bunch of somewhat cocky idealists who — despite the assassinations of the Kennedys and Martin Luther King Jr., the shootings at Kent State and Jackson State and the murders of Medgar Evers and numerous other civil rights activists — continued to believe we could make a difference in the world, and had sufficient confidence in our abilities and ideals to do so.
One of NCLH’s earliest cases was in Colorado Association for Retarded Children v. State of Colorado, a class action suit brought in federal court on behalf of a statewide class of children with disabilities against the state and all the individual school districts for failing to provide a free public education to the plaintiffs. On behalf of the center for law and the handicapped, we also worked on special education issues in North Dakota, Wisconsin, Indiana, Kentucky and Georgia.
We also got involved in cases focusing on community residential services, taking on the governor of Nebraska and state officials there who directed a home for people with intellectual disabilities, as well as a suit against an Ohio residential institution. From the beginning, our intrepid band of Notre Dame law student interns was quite successful. Judges ruled favorably toward the positions advocated in all of the initial briefs our team was involved in.
The class of ’73 graduated from Notre Dame Law School on May 20, and the next day I was hired as a staff attorney at the National Center for Law and the Handicapped. That October NCLH brought together 25 attorneys from around the country to discuss the challenges they were encountering in fashioning or litigating “right to education” lawsuits in their states. Interacting with these legal advocates and experts provided a solid foundation for our subsequent activities supporting and coordinating special education reform.
By this point, Murdock’s Mental Retardation and the Law course had been renamed Law and the Handicapped. Marcia had been appointed as a lecturer on the ND faculty and began teaching the course, supplemented for various classes by me and other NCLH attorneys. The course contained segments on the right to education, deinstitutionalization and community alternatives, involuntary sterilization, employment discrimination, access to public buildings, competency and guardianship, air transportation, and denials of medical treatment. Students were required to write complaints and legal briefs, and to tour local educational and treatment facilities.
One class member of the Law and the Handicapped course in spring 1974 was John Lancaster ’67, ’74J.D. The ROTC student had been commissioned a second lieutenant in the U.S. Marine Corps and was sent to Vietnam during the 1968 Tet Offensive as an infantry platoon commander. During a firefight, an AK-47 round pierced his lungs and hit his spinal column, resulting in paralysis that left him unable to walk and required the use of a wheelchair.
Returning to the United States with a Purple Heart and a Bronze Star, John’s first experience battling for disability rights centered on his effort to enroll in law school at his alma mater. When he applied, John says, “I was told that although I qualified they could not accept me because the school was inaccessible. It was only when I agreed to make my own arrangements and bring my own chair that they accepted me.”
NCLH continued to play a key role as an information clearinghouse for disability legal rights advocacy, facilitating the exchange of legal documents and other materials between disability rights attorneys and other professionals, and compiling and circulating lists and summaries of the pertinent court actions. The center’s attorneys and interns generated a high volume of our own written products between 1972 and 1975 and were involved in a number of influential lawsuits.
A powerful precedent was set in the 1974 case In re G.H., in which I had the honor to represent a child with severe physical disabilities before the Supreme Court of North Dakota. I managed to win a judicial victory that was the first decision by the highest court of any state recognizing the constitutional right of children with disabilities to equal educational opportunities in the public schools.
We participated as amicus curiae (friend of the court) in the leading case of O’Connor v. Donaldson, in which the Supreme Court restricted the practice of involuntary institutionalization, ruling that a “finding of ‘mental illness’ alone cannot justify a State’s locking up a person against his will and keeping him indefinitely in simple custodial confinement.” We also filed an extensive amicus brief in a Pennsylvania case addressing the permissibility of “voluntary” commitment of children to institutions by their parents.
As time passed, we were involved in a variety of other issues related to disability rights. When a mother in southern Indiana sought legal authorization for sexually sterilizing her 15-year-old son, who had suffered brain damage in an auto accident, Marcia became co-counsel in opposing the surgery. The mother argued that the boy was mentally impaired, even though the evidence showed his I.Q. tested well above the level of intellectual disability, and expert witnesses testified that he had exhibited no antisocial or aggressive behavior and was sufficiently intelligent to understand what sterilization was and to make such a decision himself. The mother contended that she had a parental right to insist upon the procedure because he had “become interested in girls,” “wanted to date,” and had kissed a girl on a church bus; and that if he impregnated someone it would likely be another special education student.
Consistent with the position advocated by NCLH, the trial and appellate courts denied the mother’s right to secure the operation, ruling that law does not invest parents with such a power to permanently prevent their offspring from procreating.
NCLH also strongly opposed widely publicized situations in which infants with disabilities were denied lifesaving treatment that would have routinely been provided to infants without disabilities. One notorious instance in the early 1970s involved a newborn with Down Syndrome. The infant lay in a bassinet in a back corner of the nursery at the Johns Hopkins University Hospital, with a sign that read, “Nothing by mouth.” He lasted 15 days until he starved to death, although a simple operation to correct an intestinal blockage that prevented his digesting food would have saved his life.
A 1974 article in The Washington Post contained an estimate that unnecessary deaths of babies with disabilities in the United States might number in the thousands each year. With advocacy by NCLH and others, such practices would eventually become legally unacceptable.
I also wrote a paper surveying the rights possessed by people with disabilities. “The Legal Rights of Handicapped Persons” began with a provocative first sentence: “Charity may be the highest of the virtues, but in some situations it may not be as valuable as a court order.”
The paper discussed the legal precedents establishing rights of those with disabilities in eight particular contexts — education; equal employment opportunities and just payment for labor; voting; meaningful and fair access to the courts; marriage, procreating and raising children; being free unless proven dangerous; making and enforcing contracts and owning and disposing of property; and fair and equal treatment by public agencies. In addition, I included a list (without elaboration) of “Other Rights”:
To send and receive mail; To privacy, especially concerning one’s intimate bodily functions; To equal access to medical services; To choose and practice a religion; To have relationships with one’s peers, including members of the opposite sex; To equal access to welfare, social security, and other social service programs; To freely express oneself, whether it be through the choice of one’s hair length, clothing styles, music, or otherwise; To be free from culturally-biased and other improper testing and classification procedures; To equal opportunities for housing and freedom from discriminatory zoning ordinances; To be free from medical experimentation; To travel and to free access to buildings and transportation facilities; To be free from governmental encroachment upon a normal lifestyle and life cycle.
As far as I know, this paper was the first compilation of specific rights based on actual legal precedents and statutes, providing a “bill of rights” for individuals with disabilities.
Despite the good work that NCLH continued to do, federal budget cuts led, tragically, to termination of the center’s funding in the fall of 1980. Trying to buy time so the agency could find other funding, Notre Dame moved its operations onto campus in July 1980 and provided some funding. But in June of 1981, the National Center for Law and the Handicapped finally closed up shop.
Though the small agency existed for less than a decade, it played a critical role in the formative stage of the disability rights movement. And many of its “alumni” went on to do groundbreaking advocacy work in disability rights.
I went to work in Washington, D.C., when I was recruited by the U.S. Commission on Civil Rights to co-write, with Christopher Bell, its first report on discrimination against people with disabilities. The report traced the history and forms of discrimination on the basis of disability and offered an analytical framework for understanding disability rights laws and existing court decisions. What the commission chose not to include in the report, despite our protestations, were legislative recommendations to advance disability nondiscrimination law.
Brazenly, Chris and I proceeded on our own to write what we called a “Statutory Blueprint” for a federal law prohibiting disability discrimination. Published by the American Bar Association, it was the first in the legal literature to advocate enactment of a comprehensive federal statute delineating what constitutes disability discrimination and establishing procedures for eliminating it. The “blueprint” would serve as a rough prototype of what became the Americans with Disabilities Act.
A great opportunity presented itself when I was hired in 1985 by the National Council on Disability (NCD), a new independent federal agency whose primary mission was to review federal laws and programs affecting people with disabilities and to make recommendations to the president and Congress as to how those laws and programs should be improved.
As a staff person of the council, in January 1987 I sat down at a word processor in my small office and began writing the first draft of a comprehensive nondiscrimination bill — the culmination of 15 years of litigation and study of disability legal issues. NCD published my draft of the Americans with Disabilities Act (ADA) in 1988; it was introduced in Congress with a few changes that same year, and a revised version was signed into law on July 26, 1990. This work would ultimately lead the U.S. Supreme Court to recognize me as “the drafter of the original ADA bill.”
It seems unlikely that the disability rights movement could have blossomed so fully and quickly if Notre Dame had not embraced, supported and promoted it during its seminal years. And I do not know how the ADA could have been conceived, drafted and passed without the opportunity the University gave my colleagues and me to learn about and join the battle against discrimination on the basis of disability. The fact is that Notre Dame, its faculty, administration, student interns and alumni played crucial roles in the emergence of the disability rights movement and its successes in the courts and Congress, thereby contributing greatly to the quality of life of millions of persons with disabilities and their families.
Robert L. Burgdorf Jr. is a professor emeritus at the David A. Clarke School of Law, Washington, D.C. He lives in Silver Spring, Maryland, with his wife, Dr. Andrea Farbman, and is writing a book on the history of the disability rights movement and the enactment of the Americans with Disabilities Act. One of his four daughters, Molly Burgdorf, has embraced the “family business” by becoming a high-level disability rights federal policy attorney in Washington, D.C.