Members of Congress who have children with disabilities have bonded over that shared experience, despite vast political differences and broader polarization.
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“We may not vote together on hardly anything, but there’s a deeper connection,” said Senator Eric Schmitt, Republican of Missouri, of a Democratic colleague whose child also has a disability.
One year into his first term in Congress, Senator Eric Schmitt, Republican of Missouri, has sought to find his lane while learning how multilayered relationships in Washington can be.
Mr. Schmitt, a towering figure at 6-foot-6, is a hard-right conservative and staunch defender of former President Donald J. Trump. He introduced 11 bills his first year in Congress, including bills to cut diversity and inclusion offices across federal agencies and to require agencies to roll back three pieces of regulation for each new one. As the Missouri attorney general, Mr. Schmitt signed on to a lawsuit seeking to overturn the results of the 2020 election, and he filed suits against China over the coronavirus and against school districts for their Covid-19 mask mandates.
Even as he has connected with his Senate peers on the right, however, 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 not vote together on hardly anything, but there’s a deeper connection.”
At a moment of stark polarization across the nation, Mr. Schmitt and Ms. Hassan are among several lawmakers in Congress with disabled children who have bonded over that 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 family, the importance of relationships on Capitol Hill and the personal perspectives lawmakers bring with them to Washington that shape their political and policy agendas.
“It’s something that you hear people in public office say a lot, 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 stay focused on it.”
For Mr. Schmitt, his son’s needs shaped one of his earliest moments in office: figuring out how to get the family to the Capitol for his swearing-in. Air travel is challenging for Stephen, so the family packed into their S.U.V. and drove the 12 hours from the St. Louis area to Washington instead. Mr. Schmitt and Ms. Hassan have discussed how she has navigated those sorts of challenges since she joined the Senate, and the importance of sharing as many experiences as possible with their children.
“He certainly made me a better person,” Mr. Schmitt said of Stephen. “He’s a really loving kid. If he was 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 shaped like an angel wing, and M.R.I. scans later revealed tumors on his heart, kidneys and brain. Stephen began to have small seizures when he was 1, and they soon grew worse.
“I’ll never forget the first time I walked into his bedroom and he was still seizing,” 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 hall and sometimes think of that moment and how just terrifying it was.”
Stephen at one point had to undergo a four-hour procedure that nearly ended with him in an induced coma. Mr. Schmitt recalls the red digital clock on the hospital wall that ticked off every second of the 20 minutes the doctors had to wait before trying a new medication to stop his seizing.
“From that experience, around that time, you start to do some soul-searching,” Mr. Schmitt said. “What should I be doing? As a father, I wanted to do everything I could for him. But I felt like there was more to do.”
While serving in the Missouri Senate, Mr. Schmitt notched several legislative victories for people with disabilities. He led bills that allowed families of disabled children to set up tax-free savings accounts to cover future housing, education and other expenses; forced insurance companies to cover a type of behavioral therapy for autism; and legalized CBD oil for medicinal use in epilepsy patients.
The U.S. Senate poses different legislative challenges, plus the additional requirement of being away from home for much of the year.
“That is the toughest part of the job, no doubt,” Mr. Schmitt said.
By nature, the Senate is a clubby place known for bipartisan deal-making more than the House, and senators tend to get to know one another well.
“If you’re willing to work with people, and you’re not a jerk, there’s a lot you can get done,” Mr. Schmitt said. In October, for instance, the Senate unanimously passed a bill related to commercial space launches that Mr. Schmitt sponsored with Senator John Hickenlooper, Democrat of Colorado. Both serve on the Senate Commerce Committee, and Mr. Schmitt said their work together grew out of an early gathering Mr. Hickenlooper hosted at his home.
“When you spend that much time with people, you can still fight the important fights but get to know people as well,” Mr. Schmitt said.
Image“Change and inclusion takes time and consistent effort, but then when we make it, we make it together,” said Senator Maggie Hassan, Democrat of New Hampshire.Credit…John Tully for The New York Times
Ms. Hassan, who has been 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 pursue disability rights advocacy.
Ben “is a funny and smart and engaging person,” she said in an interview. But his condition means he uses a wheelchair and cannot speak or feed himself, and he “needs one-on-one assistance with every aspect of daily life.”
“I realized during Ben’s childhood and early schooling not only the importance of advocating for him in those environments,” Ms. Hassan said, “but also the difference that advocates and their families and their legislative champions and sometimes lawyers have made in moving the ball forward, and really making inclusion a priority in a democracy where everybody is supposed to count.”
She and Mr. Schmitt have shared in their hopes and concerns for the path toward greater inclusion, though their policy visions differ. They have both felt the “pit in your stomach when you worry about how you’ll make it home to do your caregiving shift, or what lies ahead for your children once you age,” she said.
In the House, 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’re family because there’s an understanding, a shared experience,” Ms. McMorris Rodgers said about other lawmakers with disabled children. “It definitely builds a relationship. And there’s an immediate desire to work together.”
Mr. Stauber, who had a Barbie doll with Down syndrome displayed in his Washington office, teared up during an interview as he recalled how his son Isaac, 21, would greet him every day when he got 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 ’70s and ’80s rock music.
“There are colleagues on the other side of the aisle that politically I may not agree with,” Mr. Stauber said. “But there is no daylight between us in supporting our special needs community.”
He added: “We’ll give each other a hug when we need it. It’s a good common ground.”
That mutual understanding has at times supported disability-related legislation. In 2014, Congress passed a bill spearheaded by Ms. McMorris Rodgers that allowed disabled people 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 that aim to aid people with disabilities, some with bipartisan support. A proposal led by Ms. McMorris Rodgers would integrate people with disabilities into the work force and ensure they are paid the same minimum wage as workers without disabilities. Ms. Hassan has continued her efforts to increase funding and support for home and community-based care, and she and Mr. Stauber are leaders on legislation to fully fund the federal government’s unmet commitment to pay for a portion of the nation’s special education expenditures.
Ms. Hassan warned, though, that progress was not a guarantee. She worried that Mr. Trump, who has drawn criticism for his remarks and policies toward people with disabilities in addition to his authoritarian rhetoric, posed a threat to democracy.
“I am absolutely convinced that the kind of progress we have made,” she said, “whether it’s for people with disabilities or people who are trying to recover from addiction, whether it’s other marginalized groups — that wouldn’t happen if we didn’t have a democracy that holds elected officials accountable to their constituents.”
This particular Congress, with a Republican-led House plagued by internal divisions and dysfunction, has been extraordinarily unproductive.
But Ms. Hassan holds out hope.
“Change and inclusion takes time and consistent effort, but then when we make it, we make it together,” she said.
Kayla Guo covers Congress for The New York Times as the 2023-24 reporting fellow based in Washington. More about Kayla Guo
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Source: nytimes.com
