On January 26, Iowa Sen. Tom Harkin, a longtime supporter of disability rights and legislation, announced that the current congressional term, which ends in 2014, will be his last. While the Americans with Disabilities Act was only one of many laws he supported on behalf of disabled people, Harkin will especially be remembered for his critical role in getting the landmark law passed.

Connecticut Sen. Lowell Weicker actually introduced the ADA in April 1988, but after Weicker lost his seat, Harkin stepped in to make the final historic push. On July 13, 1990, with Harkin at the helm, a final debate and vote played out on the Senate floor. This congressional debate was unlike any other. Harkin became the first person to debate a bill in sign language, a nod to the disability community, but also a tribute to his brother Frank, who was deaf. Harkin had a message for Frank and the countless others who had felt the sting of discrimination: “Congress opens the doors to all Americans with disabilities — today we say no to ignorance, no to fear, no to prejudice.”

Bobby Silverstein, a principal at a Washington, D.C., law firm, served as staff director and chief counsel for the Subcommittee on Disability Policy, which Harkin chaired. Silverstein says the Senate floor is usually empty during debates, with many senators tuning in to C-SPAN. However, after Harkin began debating in sign language, senators of all political stripes flooded to the floor to be part of history. The ADA passed by a vote of 91 to 6. It was one of the most emotional moments Silverstein had ever witnessed. “This was not only passing a law, but it truly was a personal victory for people with disabilities,” he says.

The ADA may be Harkin’s crowning achievement, but he has been a champion for people with disabilities during his nearly 40 years in Congress. His efforts have opened many doors for millions of Americans, including mandating closed captioning, Money Follows the Person, the ADA Amendments Act, the Christopher and Dana Reeve Paralysis Act, the Affordable Care Act and reauthorizing IDEA. Harkin’s congressional career will end in 2014, but he has given the disability community much to celebrate.

Not About Politics
Thomas Richard Harkin was born in Cumming, Iowa, on Nov. 19, 1939. He grew up in modest means with five siblings. His brother Frank would inspire Harkin to become a civil rights leader. “Frank faced prejudice and discrimination on a regular basis, but he refused to accept the biases and stereotypes that society tried to impose,” Harkin says. “He fought for and won a life of dignity.”

Harkin went to Washington in 1969 to join Iowa Rep. Neil Smith’s staff.  In 1974, he was elected to Iowa’s Fifth Congressional District and served 10 years in the House before winning a Senate seat. In November 2008, he became the only Democrat in Iowa history to serve a fifth Senate term.

Sen. Ted Kennedy selected the freshman senator to shape legislation designed to protect the civil rights of Americans with disabilities. His brother’s battles with discrimination would forge Harkin’s convictions and move him to settle years of injustices. The landscape of America changed forever when President George H. W. Bush signed the ADA in 1990. When the ADA came under attack in the mid 2000s, Harkin led the fight to ensure these civil rights would remain intact.

Over the years, Harkin has worked with many colleagues, presidents, activists, advocates, veterans, constituents and everyday Americans. Silverstein, one of the ADA’s primary architects, began working with Harkin and his disability subcommittee in 1986. He says it was then that he learned about the Senator’s passion for disability rights. During a staff meeting, when the ADA language was being developed, a staffer cautioned the Senator on what should be in the bill. Silverstein says the staffer told Harkin he should be concerned about reelection because no Iowa Democrat senator had ever been reelected. Harkin told the staffer in a stern voice that he didn’t get elected to get reelected, and he would do whatever was necessary to ensure the rights of people with disabilities. Silverstein says from that point on, politics was never an issue.

As for the influence of Harkin’s brother, Silverstein says, “It definitely was a motivator, but it was also something that gave him personal knowledge and experience that would help him not only with the passion but with substance. Harkin wanted to make sure others wouldn’t experience the discrimination felt by his brother.”

Silverstein says Harkin made disability a nonpartisan issue because it could affect anybody. The Senator also had keen political skill. “He understood the history of bipartisanship in this area and understood this was the best strategy for accomplishing goals,” says Silverstein.

The day of the ADA’s final passage especially reflected Harkin’s character.  He was the manager for the bill, responsible for overseeing the final debate. When the big moment arrived, Silverstein was sitting next to Harkin’s desk, but the Senator was nowhere to be found. “Tom was with my wife and my children in the gallery to make sure that they would be able to be there and not be ushered out,” says Silverstein. It meant a great deal to Silverstein that Harkin took the time to make sure his family could watch history unfold.

A Career of Commitment
National ADAPT organizer Bob Kafka met Harkin when the push was being made for the ADA. Kafka says back then ADAPT was looked down on by the traditional disability community, but that wasn’t the case with Harkin. “Harkin from the very beginning understood the civil rights aspect of what we were doing and how relative it was to the passage of the ADA,” Kafka says.

Kafka remembers an incident when ADAPT pressured Rep. Newt Gingrich to support community-based services as he sat on a bench in the Capitol rotunda. At that moment, Harkin passed by the assembled advocates and gave them a big thumbs up. His unabashed support was exemplary.

Kafka has worked legislatively with Harkin and says he’s very supportive of keeping people out of institutions. Harkin voiced his strong support for community-based services in bills from the first MiCasa to the Community Choice Act. Kafka says Harkin intuitively understood these services would be vital to people being successful after the ADA became law.

Kafka says Harkin understands the political process better than almost anyone and knows how to get things done. He also has a reputation for not giving up, which was evident when Harkin tried to get the CCA into the Affordable Care Act. Mandatory community-based care was abandoned, but Harkin inserted the Community First Choice Option into the final health care bill, making sure the disability community wasn’t forgotten. “That shows a lot of political skill,” says Kafka, “knowing that you get what you can now, and then you move on.”

Harkin constituent Jenn Wolff has been politically active ever since she became a paraplegic 10 years ago. The occupational therapist from Waverly, Iowa, met the Senator a few years ago at an advocacy event. She admires how Harkin relates to his constituents in a down-to-earth manner without being partisan.

Wolff says it’s amazing what Harkin has accomplished in his career and the impact he has had across the country. “He really gets the fact that what he has done for the disability community has not only just helped the disability community, but it’s helped people at large,” Wolff says.

Last June, Wolff attended the Roll on Capitol Hill, where the United Spinal Association gave Harkin the James J. Peters Disability Champion Award. Minutes before the award was presented, Harkin staffer Andy Imparato asked Wolff if she’d like to help honor the Senator. She was a bit shocked but quickly said yes. She says it was truly one of the highlights of the last 10 years. “It was an unbelievable moment to help recognize this man who has done so much for the community,” Wolff says.

United Spinal senior vice president and general counsel, Jim Weisman, says Harkin has been the go-to guy on every disability issue for decades. Weisman worked closely with Harkin after the 1994 midterm elections when attempts were made to weaken the ADA. Harkin stuck to his guns and the attacks failed. Weisman says Harkin is like a dog with a bone — he doesn’t let go when he thinks he’s right. “He’s a
remarkable guy,” Weisman says.

Harkin is a down-home guy who’s adored by his constituents, says Weisman, who remembers the first time he visited Harkin’s office and had his senses filled with the aroma of fresh-popped popcorn. The Senator has a large popcorn machine in his office lobby, which constantly pops Iowa corn for anybody who visits.

Few people in Congress are deeply affected by disability like Harkin has been. “When you grow up with disability in your house or with a disabled friend or relative,” says Weisman, “you understand things about disability that other people don’t.” Weisman says Silverstein had a great plan to get the ADA through the Senate, but Harkin was the all-important spokesman. Weisman says giving people the opportunity to work was key in bringing both parties together. It was also helpful to have a supportive president and Boyden Gray, the White House counsel, who had a best friend who was quadriplegic.

Recently, Harkin has gotten involved with the fight for accessible taxis in New York City. He had visited London and saw their taxis were all wheelchair accessible. Weisman says once he saw that, he couldn’t live with the New York situation. The Senator wrote an op-ed in the New York Daily News last year where he pushed Mayor Bloomberg to act. “Can you imagine another senator who is not from New York, telling the city what to do?” Weisman says.

Harkin took things a step further and had the accessible taxi manufacturer VPG bring the MV-1, an accessible taxi, to the Capitol building. New York Sens. Schumer and Gillibrand took a ride in the taxi with Harkin — another example of Harkin pushing for what he feels is right.

His Legacy is Ours
University of Texas professor Lex Frieden played a major role in conceiving the ADA when he was executive director of the
National Council on Disability.

Frieden met Harkin when he was being considered to sponsor the ADA after Weicker’s defeat. Frieden says there were critics early, but consensus was built as politicians and advocates had the chance to debate, raise awareness, teach each other and compromise when needed. Some minority groups even needed convincing because they were afraid the ADA would weaken their rights. Frieden says Harkin was able to be influential with many different groups.

Frieden says President Bush was supportive from the moment he was shown the draft of the ADA in 1986. The president didn’t need convincing, but White House Chief of Staff John Sununu was completely opposed to the legislation, Frieden says. Sununu tried to change the president’s mind but was unsuccessful. Harkin’s role was to go nose-to-nose with Sununu, along with negotiating with the Department of Justice.

Harkin spent more time than anyone with Attorney General Dick Thornburgh, knowing it was important to get the ADA provisions just right. “He understood the law well enough that he wanted to make sure the words in the legislation backed up the intent that we all had,” Frieden says. “Harkin more than anybody else understood that if the words weren’t right, then the courts would never support our initiative and it would be useless.”

Frieden says members of Congress are extremely busy and their schedules are booked, but Harkin has always made himself available. “I don’t know any other person with a schedule as demanding as the Senator’s who has always, would always and will always be available when he’s needed,” Frieden says. “He’s just loyal to his beliefs and values, and is loyal to people that believe in him.”

Harkin says he has had many memorable moments over his career. “It’s hard to single out just one moment, but I’m tremendously proud of the ADA,” he says. During the effort to make it law, the Senator was moved by stories of people who had to crawl on their hands and knees to go up stairs, people who couldn’t ride a bus because there wasn’t a lift, people who couldn’t attend events because there was no accessible seating and people who couldn’t cross the street because there weren’t curb cuts.

While the ADA has made dramatic progress, Harkin isn’t completely satisfied. “I’m disappointed that we haven’t made more progress on increasing employment for people with disabilities, and that we still have an institutional bias in the Medicaid program,” he says. He wants to make remedying these issues an important priority in the time he has left.

Harkin’s decision in January to not seek a sixth term sent a shock wave through the disability community, but the legacy he leaves behind won’t be matched anytime soon, if ever.

Silverstein says a major hole will be left when Harkin leaves, and it will need to be filled by Democrats and Republicans.

Silverstein is quite optimistic about Harkin’s eventual legacy. “I hope that part of his legacy is that he’s

[seen as] a person who risked his political career to enhance and improve opportunities and options for people with disabilities,” he says, “because he knew it was the right thing to do.”

Kafka says it may be premature to cast Harkin’s legacy in stone. He doesn’t believe Harkin will quit advocacy work completely. “I would be very surprised if he doesn’t continue his passion for working with the disability community and working on ways to build civil rights,” Kafka says. “I can’t see him just going back to Iowa and fishing.”

Hearing Harkin announce his retire-ment was emotional for Wolff. “It was very sad because he has done so much, not only for the disability community, but he has also been such a good legislator,” she says. Part of Harkin’s legacy, she adds, is motivating more people with disabilities to get into politics.

Harkin’s departure will provide an opportunity for a new leader to step forward, but Frieden isn’t worried about there being a lapse. “I’m eager to see who steps forward to be our next great leader and advocate,” Frieden says. “I think Harkin will go down in history as the chief Senate sponsor of the ADA, and he will be revered for the important role he played.”

“I want my friends in the disability community to know what an honor and a joy it is to work with you,” says Harkin, “and to know that I expect that work to continue for the next two years and long after I leave the Senate. What we have accomplished together has been central to my mission as a House member and a senator, and none of it would have been possible without the advocacy of grassroots disability activists around the country.”
Perhaps the greatest legacy Harkin leaves can be seen in his own words. “Fundamentally, I want the disability community to know that I love them,” he says, “and that our country needs them to keep pushing for justice and freedom.”