Lawmakers with disabled children find common ground in the divided Congress

A year into his first term in Congress, Sen. Eric Schmitt, Republican of Missouri, has been trying to find his path while learning how layered relationships in Washington can be.

Mr. Schmitt, a towering figure at 6 feet tall, is a far-right conservative and staunch defender of former President Donald J. Trump. He introduced 11 bills his first year in Congress, including bills to eliminate diversity and inclusion offices at federal agencies and to require agencies to roll back three pieces for every new rule. As attorney general of Missouri, Mr. Schmitt signed a lawsuit seeking to overturn the results of the 2020 election. lawsuits filed against China over the coronavirus and against school districts over their Covid-19 mask mandates.

However, while he has connected with his right-wing colleagues in the Senate, Mr. Schmitt has also forged a deeper kinship with an unlikely colleague: Senator Maggie Hassan, Democrat of New Hampshire.

They have little in common in terms of politics or legislative priorities. But both have children with disabilities: Ms. Hassan’s son, Ben, 35, has severe cerebral palsy. Mr. Schmitt’s son, Stephen, 19, is nonverbal and has tuberous sclerosis, epilepsy and autism.

“You have that special bond that is sometimes hard to explain to other people,” Mr. Schmitt said of his relationship with Ms. Hassan. “We may vote together on virtually nothing, but there is a deeper connection.”

At a moment of intense polarization across the country, Mr. Schmitt and Ms. Hassan are among a number of lawmakers in Congress with disabled children who bond over this shared circumstance. The common ground these lawmakers have found is a reminder of the human elements of serving in Congress: the time spent away from their families, the importance of relationships on Capitol Hill and the personal perspectives lawmakers bring with them to Washington and that determine their political and policy agendas. .

“It’s something you often hear people in public office say, but we actually have a lot in common,” Ms. Hassan said in an interview. “We have similar family experiences. We’re struggling with a lot of the same things, and I hope Americans will remember that and continue to focus on that.”

For Mr. Schmitt, his son’s needs represented one of his first moments in office: figuring out how to get the family to the Capitol for his swearing-in. Air travel is a challenge for Stephen, so the family piled into their SUV and drove the 12 hours from the St. Louis area to Washington instead. Mr. Schmitt and Ms. Hassan discussed how she has dealt with these types of challenges since joining the Senate, and the importance of sharing as many experiences as possible with their children.

“He definitely made me a better person,” Mr. Schmitt said of Stephen. “He is a very sweet child. If he were here, he has no words, but he would probably try to give you a big hug.

Stephen was diagnosed with tuberous sclerosis, a rare genetic condition that causes tumors to form all over the body, when he was just a few months old. His parents noticed a birthmark on his leg in the shape of an angel’s wing, and MRI scans later revealed tumors in his heart, kidneys and brain. Stephen started having minor seizures when he was one, and these quickly got worse.

“I will never forget the first time I walked into his bedroom and he was still convulsing,” Mr. Schmitt said, calling it “one of the most traumatic” moments of his life. “I will still, on a beautiful Saturday morning, walk down that hallway and sometimes think about that moment and how terrifying it was.”

Stephen at one point had to undergo a four-hour procedure that almost ended with an induced coma. Mr. Schmitt remembers the red digital clock on the hospital wall ticking every second of the 20 minutes doctors had to wait before trying a new drug to stop his epilepsy.

“From that experience, you start to do some soul searching around that time,” Mr. Schmitt said. “What should I do? As a father I wanted to do everything for him. But I felt like there was more to do.”

While serving in the Missouri Senate, Mr. Schmitt achieved several legislative victories for people with disabilities. He spearheaded bills allowing families of disabled children to set up tax-free savings accounts to cover future housing, education and other expenses; insurance companies forced to cover some sort of thing behavioral therapy for autism; and legalized CBD oil for medicinal use in epilepsy patients.

The U.S. Senate poses several legislative challenges, plus the added requirement of being away from home for much of the year.

“That’s definitely the hardest part of the job,” Mr. Schmitt said.

By nature, the Senate is more of a club-like place than the House of Representatives, which is known for bipartisan agreements, and senators tend to get to know each other well.

“If you’re willing to work with people and aren’t an idiot, you can get a lot done,” Mr. Schmitt said. In October, for example the Senate unanimously passed a bill related to commercial space launches that Mr. Schmitt sponsored with Senator John Hickenlooper, Democrat of Colorado. Both are members of the Senate Commerce Committee, and Mr. Schmitt said their work grew out of an early meeting Mr. Hickenlooper hosted at his home.

“When you spend so much time with people, you can still fight the important battles, but also get to know people,” Mr. Schmitt said.

Ms. Hassan, who has served in the Senate since 2017, has focused on expanding support for home and community-based care. Her son, Ben, first inspired her to run for office and advocate for disability rights.

Ben “is a funny, smart and engaging person,” she said in an interview. But his condition means he uses a wheelchair and cannot speak or feed himself, and requires ‘personal assistance with every aspect of daily life’.

“During Ben’s childhood and early school years, I realized not only the importance of advocating for him in those environments,” Ms. Hassan said, “but also the difference that lawyers and their families and their legislative advocates and sometimes advocates have made when moving the ball. moving forward, and really making inclusivity a priority in a democracy where everyone is expected to count.”

She and Mr. Schmitt have shared their hopes and concerns about the path to greater inclusivity, though their policy views differ. They’ve both felt the “pit in your stomach when you worry about how you’re going to get home to do your caregiving shift, or what lies ahead for your children as you get older,” she said.

In the House of Representatives, Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

“You almost feel like you are family because there is an understanding, a shared experience,” Ms. McMorris Rodgers said of other lawmakers with disabled children. “It definitely builds a relationship. And there is an immediate desire to work together.”

Mr. Stauber, who had a Down syndrome Barbie doll on display in his Washington office, broke down in tears during an interview as he recalled how his son Isaac, 21, greeted him every day when he came home from work as a police officer. Isaac, one of Mr. Stauber’s six children, has “severe and profound” Down syndrome. He graduated from high school in the spring and, like his father, loves rock music from the ’70s and ’80s.

“There are colleagues on the other side of the aisle that I may not agree with politically,” Mr. Stauber said. “But there is no daylight between us in supporting our special needs community.”

He added: “We give each other a hug when we need it. It’s good common ground.”

That mutual understanding has sometimes supported disability legislation. In 2014, Congress passed a bill, led by Ms. McMorris Rodgers, that allowed people with disabilities and their families to contribute to a tax-free savings account modeled after Section 529 education plans.

In recent years, lawmakers have introduced several bills aimed at helping people with disabilities, some with bipartisan support. A proposal led by Ms. McMorris Rodgers would do that integrate people with disabilities into the labor market and ensure that they receive the same minimum wage as workers without disabilities. Ms Hassan has continued her efforts to this end increase funding and support for home and community care, and she and Mr. Stauber are leaders in legislation to fulfill the federal government’s unfulfilled promise to pay for some of the nation’s special education expenses.

However, Ms Hassan warned that progress is not a guarantee. She was concerned about Mr. Trump, who has done just that drawn criticism because of his comments and policies towards people with disabilities, in addition to his authoritarian rhetoric, posed a threat to democracy.

“I absolutely believe that the kind of progress we’ve made,” she said, “whether it’s for people with disabilities or people trying to recover from addiction, whether it’s for other marginalized groups — that wouldn’t happen if we didn’t.” There is no democracy in which elected officials are accountable to their voters.”

This particular Congress, with a Republican-led House plagued by internal divisions and dysfunction, has been deeply unproductive.

But Ms Hassan remains hopeful.

“Change and inclusivity take time and consistent effort, but when we make it happen, we do it together,” she said.