JULY 28, 1989
In an upstairs room at the Capitol, Senator Ted Kennedy slammed his hand down on the table with a force that shook the room. His hefty body, now raised from his seat, angled across the solid wooden surface as he glared at President George H. W. Bush’s chief of staff, John Sununu, their heads inches apart. Kennedy screamed at Sununu, “You want to fight? Fight with me. You want to yell? Yell at me.” Kennedy’s face was red with anger, the tendons bulging from his neck. Sununu suddenly became pale and quiet and backed down.
Around the gleaming walnut table were a group of senior and seasoned legislators—Senators Orrin Hatch, Tom Harkin, David Durenberger, and Bob Dole, as well as Attorney General Richard (Dick) Thornburgh, Secretary of Transportation Samuel Skinner, and Senate and White House staff members. The date was July 28, 1989, and all of them were there to negotiate the details of the massive and significant legislation known as the Americans with Disabilities Act.
The meeting had been called because after ten weeks of staff-level negotiations between the White House and Congress, progress had been made but a deadlock was now apparent. The heavyweights had gotten together to see what could be done. Dole, the minority leader, offered his spacious conference room with its marble fireplace and large table. One by one, the members of the Senate and the White House filed into the air-conditioned room from outside, where the ninety-degree summer day was broiling the city. Harkin had brought along his staff member Bobby Silverstein, who used a luggage trolley to wheel in a stack of massive black binders—the legislation as it had been crafted thus far. After some brief chitchat, the principals began their own discussion. Sununu served as the point person for the White House, although Thornburgh, as attorney general, was part of the executive branch.
Hatch leaned over and whispered into the ear of his staffer Mark Disler: “You watch! In fifteen minutes you’ll see how impassioned Kennedy is about this bill.”
A majority of the Republicans in the room were of the conservative stripe, but Sununu’s role in the White House was to serve as watchdog for archconservative values. He thought that some crucial mandates, including the very touchy idea of forcing businesses to retrofit their establishments to make them accessible, were too liberal in the bill. Wouldn’t that measure cost ordinary small businesses a fortune? As an uncompromising conservative, Sununu had many objections to what he saw as wording that was not business-friendly. What if the business couldn’t afford to make these changes? What if, for example, there was a barbershop on the second floor of an existing building in New Hampshire? Would you expect the poor barber to have to install an elevator to accommodate some wheelchair-using customer in need of a haircut?
Silverstein, small eyes peering through large glasses into the mysterious abyss of the pages upon pages of legislation, had been silently noting and mentally rebutting Sununu’s objections. Kennedy cautioned Sununu: “You’re flyspecking the bill.” But Sununu continued picking away. Silverstein, having done his conscientious homework in advance, finally raised a defense to one of Sununu’s objections about the bill. Sununu’s features began to twitch with irritation. He started speaking to Silverstein in a controlled voice but worked his way up to more impassioned tones: “Every time I say something, you always bring something up. I don’t want to hear from you anymore.”
Harkin, sitting between Silverstein and Kennedy, was just shuffling his papers, trying to think how to defend his own aide, when Kennedy jumped to his feet, his bulky frame creating seismic jolts as it crashed against the table. The hours of negotiations—indeed the years of maneuvering—to get this bill through Congress were taking their toll. Harkin remembers: “I thought [Kennedy] was going to grab [Sununu] by the collar.” Kennedy pointed his finger at Sununu’s face and bellowed, “If you want to yell at anybody, you yell at me, or you yell at Senator Harkin. You don’t go after the staff! You go after the big boys. You got something to say, you say it to me. You want to yell at me? You go right ahead and yell at me!”
In a moment of disgust with Silverstein and his ilk, Sununu then suggested that the room be cleared of all staff and that only the elected members of Congress should stay. Kennedy’s response: “I said, fine, then Sununu should leave because he was staff.” That seemed to quiet things down.
Kennedy sat back down as an awkward silence filled the room. Sununu’s usually robust frame seemed to sink down in his chair, and his face was drained of color. An hour and a half later, agreement had been reached. As they left the room, Kennedy said to Hatch, “Jack [Kennedy] wouldn’t have done that. He wouldn’t have sent his chief of staff; he’d have sent the attorney general or the chief counsel.”
That is the story many of the major players tell. It is compelling because of the high stakes in play and the success of the outcome. What raised the stakes was that the men and women gathered in that room all shared one thing in common—disability. Almost everyone in the room, aside from Sununu, had experienced firsthand the discrimination and inequity that can face a person with a disability. Each participant at the meeting was determined to end the kind of abuse and segregation that had held sway in the laws of the land. Not since the seismic upheavals around civil rights during the 1960s had a piece of legislation aimed at such a massive transformation of society and culture. Up until 1990, none of the members of the disabled minority group had the full range of civil rights that nondisabled US citizens had. One by one, other minority groups—notably African Americans, other people of color and various nationalities, and women—had all fought for and achieved those rights. Now it was the turn of essentially the largest minority group in the United States to claim its rights.
The only one in the room with a visible disability was Bob Dole. The senator was straight out of high school when his platoon shipped off to Europe in World War II. He had just arrived at his post in Italy, somewhat frightened but determined to do his part in the war. On his first foray, he was listening to his commanding officer, who was telling him what position to take, when he suddenly felt his shoulder torn out from his side. A sniper had chosen him for death. Dole narrowly escaped that fate, but his military career was over before it had even started. He was shipped back to his parents’ modest farmhouse in Kansas. There he spent two years lying on a bed in the living room, never thinking he could walk or otherwise function in any way again. Dole’s one arm did not work, his back was in shreds, and his hand was clenched into a fist. After many surgeries and years of rehabilitation, he was able to stand up by himself and walk unassisted. Eventually he went back to school and then into public service. His iconic pen in his clenched fist was almost as much a signature of his public identity as was his sartorial sense of style.
Ted Kennedy always had in mind his older sister Rosemary. She was an attractive young woman with a Kennedy smile and glint in her eye. Rosemary was diagnosed with an intellectual disability when she was an infant, never developing more than an IQ of an eight- to ten-year-old when she became an adult. Nevertheless, she could read Winnie the Pooh on her own and kept a simple diary. As she matured, behavioral problems led Joseph Kennedy to the disastrous decision to lobotomize her at the age of twenty-two. The operation left her much worse off than she had been. Now she had an IQ of a two-year-old and was unable to speak, walk, or control her bladder or colon. She was institutionalized. Ted Kennedy himself had various physical ailments, as did his brother John, but his family life was especially marked by his son Teddy’s bone cancer at the age of twelve. Senator Kennedy spent much time with his son during his diagnosis, treatment, and rehabilitation. The younger Kennedy’s leg was amputated above the knee, and then arduous chemotherapy followed, with the senator learning how to inject anticancer agents into his son’s body. In spending all that time in various hospitals, Senator Kennedy came to appreciate both the realities of people with disabilities and the difficulties their families face in terms of the costs and care.
Tom Harkin grew up on a farm in Iowa. His older brother Frank was born deaf, and Harkin spent his childhood with his sibling, learning sign language in the process. The senator also had a nephew, Kelly McQuaid, who became paraplegic in an accident when he was in the US Army. Harkin ended up a passionate champion of the rights of the Deaf and the disabled, making the first-ever speech in sign language on the floor of the Senate when the ADA was passed.
Dick Thornburgh was a young lawyer sitting at home when he received the phone call no one ever wants to get. His young wife had taken their three boys out in the family car to go shopping. An accident killed her and injured two of the children, one of whom suffered traumatic brain damage.
Steny Hoyer’s wife was epileptic. Early on, he had met with lobbyists and staffers from whom he had learned much about other disabilities and the idea that disability was a civil rights issue. He was a tireless advocate for the ADA in the House, and most of the organizing meetings for that phase of the bill were held in his office.
Orrin Hatch recalls his own brother-in-law’s challenges: “Ramon Hansen contracted both types of polio when he was a college student, but not only finished his degree but also a master’s degree in electrical engineering. He worked until the day he died, even though he had to be in an iron lung every night just to survive.” As a Mormon, Hatch would follow his church’s teaching that holds people with disabilities in high regard and sees disability not as punishment resulting from sin, but as an opportunity, a benefit, and a learning experience. In 1989, before the ADA, the church explained that it was “seeking more creative ways of providing religious training for those with physical, mental, and emotional impairments. But there is an even greater need to reduce the barriers imposed by a lack of understanding and acceptance of those who have disabilities.”
President Bush, who was not present at the meeting, had an uncle, John M. Walker, who had had polio. One of Bush’s brothers had been born with only one eye, Bush’s son Neil had severe learning disabilities, and another son, Marvin, had had a colostomy. The president had also lost a daughter, Robin, to leukemia when she was almost four years old.
It could not have been a coincidence that all of these legislators shared the experience of disability. If one out of five Americans has a disability, then surely many other people would be relations. Far from being an odd and unlikely thing, disability is more the rule than the exception. Many of the other senators and congressional representatives who backed the bill had family members with disabilities. Perhaps the ideological—rather than personal—nature of Sununu’s objections led him to see that Kennedy’s anger was a force greater than his own conservative proclivities. Sununu’s backing down that day might have been tactical, but he also might have recognized that the others gathered in the room had a lot more at stake than he did.
Excerpted from "Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights," by Lennard J. Davis (Beacon Press, 2015). Reprinted with permission from Beacon Press.