Ben Spangenberg, right, on his wedding day with Justin Chappel | Provided photo
By Joe Livernois
There’s Ben Spangenberg hanging with Sen. Ted Cruz. And Hillary Clinton. It’s 2016 and he’s on the campaign trail, hitting the town hall meetings and the events likely to draw primary candidates. He’s doing it all from his wheelchair and the questions he asks candidates — the conversations he has with them — are always about disability rights.
It was a heady experience, even for a 38-year-old who is entrenched in the bustle of Washington D.C. He lives and breathes D.C. politics these days, though he still considers Carmel his hometown.
He has been a champion for the disabled since he was the poster child for the March of Dimes as a kid. And he has been interested and involved in politics since 1992, when he watched the coverage of the National Democratic Convention in New York City from his hospital bed at Stanford Children’s Hospital.
“All that was on TV at the time were soaps and CNN,” Spangenberg said. He was at the hospital after getting infections that required surgery. “It was before Nickelodeon or any of the fun stuff. My mother told me I couldn’t watch the soaps so I watched the convention and I got hooked.” He was 11 at the time.
The disability — he was born with spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly — and his passion for politics and advocacy landed him with RespectAbility, where he is the national leadership program director for a national organization that fights stigma and advances opportunities for people with disabilities.
It is not a lobbying group, he is careful to point out, but it is a nonpartisan organization with a mission to advance employment opportunities and independent living for the disabled. He might have an opinion about the Trump Administration or what’s happening in Congress, but he’s more interested in advancing the RespectAbility agenda than he is pontificating about what leaders are doing.
Spangenberg is back in Monterey County this week, visiting his mother, the artist Stefani Esta, and showing off Monterey County to his spouse, Justin Chappell.
Born in Southern California, he and his family moved to Palo Alto when he was 5. When his parents separated five years later, he and his mother moved to Carmel. By then he was already active with the March of Dimes, serving as a young ambassador for the nonprofit.
He preferred the schools in Carmel to those in Palo Alto, where even then he sensed that he couldn’t keep up with heightened educational competition. He was a great student — he ended up at UC Berkeley, in fact — but he said the competition among students made him uncomfortable. Carmel was more laid back.
On the other hand, he didn’t see a lot of students like him at Carmel High. He knew of another senior who used a wheelchair when he was a freshman, and he knew a girl who had a disability who showed up on campus when he was a senior. And he knew of only one openly gay student at the school at the time, and that student had been bullied with regularity. Spangenberg said he was aware that he “wasn’t straight” at the age of 12 or 13, but kept the realization to himself.
“I think everyone in school liked me okay,” he said. “I wasn’t one of the cool kids and I didn’t get invited to a lot of parties.”
Instead, Spangenberg got involved in wheelchair sports. He played a lot of basketball and tennis. He spent winters on the ski slopes. As a younger child, he spent hours at Mission Ranch, learning to play tennis. “I had a sense of being part of a team and I made a lot of really close friends, so I got to enjoy my teen years.”
He had already become a rabid baseball fan. The San Francisco Giants were supportive of the March of Dimes, so the poster child got to spend a lot of time with the organization, met the players, went to plenty of games.
That’s why it was such a shock to everyone when he came out to his family when he was 19.
“My mother and father were okay with it and they’re very supportive,” he said. “But they were surprised because I had been such a jock.”
“I never have had the luxury of hiding my disability,” Spangenberg wrote in a poignant essay for RespectAbility last year. “My wheelchair always has been a part of me. I go where it goes. My sexuality also always has been a part of me, though for 18 years, bottled up for no one else to see.”
When you’re a kid growing with spina bifida, Spangenberg said, you never really get the sort of privacy most children take for granted. Spangenberg needed help getting in and out of showers, needed assistance with what he calls the “other activities of daily living, some of the most private moments of my day.”
His sexuality was the one thing he kept to himself. Coming out had been a “scary thought.” But going to Cal changed all that. With a student population of 30,000 at the Berkeley campus, Spangenberg’s disability and his wheelchair did not stand out like they did in Carmel. And, he wrote, “college offered a supportive environment to fully embrace my gay identity.”
College also gave him opportunities in his chosen field. In 2004 he won an internship in then-Rep. Sam Farr’s Washington office. He was the Pacific Region chairman of the Young Democrats of America at the time. He was also Farr’s guest at the 2004 National Democratic Convention in Boston.
It was there that he met Chappell, who is also interested in politics, who loved baseball and who is also disabled.
After graduating from Cal, Spangenberg returned to Carmel and started applying for jobs. He also got his first paying job, working in the tennis pro shop at Mission Ranch to tide him over until he found a job in politics. He returned to Washington and knocked on doors, eventually scoring an interview with the National Council on Independent Living. The interviewer was late, and while waiting in the lobby Spangenberg happened to run into Chappell, who was working there. “We kept running into each other after that,” he said.
Chappell eventually invited Spangenberg to a Washington Wizards basketball game. They were both into sports, but neither of them were huge professional basketball fans, so they spent most of the game talking about their mutual interests. They became a couple soon after and were engaged to be married in 2011 while attending the Fringe Festival in Scotland.
Political geeks that they are, the two of them geeked out on the progress of marriage equality measures. In 2015, Obergefell v. Hodges was finally heard by the Supreme Court. Spangenberg and Chappell showed up on the steps of the Supreme Court at 2 a.m. on June 26, 2015, hoping to get a seat inside to hear arguments. Chappell ended up sitting next to James Obergefell, one of the plaintiffs, in court.
By a 5-4 vote, the Supreme Court ruled that the state of Ohio must legally recognize Obergefell’s 2013 marriage to John Arthur, who was terminally ill when the two were wed. Obergefell had been the surviving spouse on his death certificate based on their marriage in Maryland, but the Ohio state attorney general’s office opposed same-sex marriages. Ultimately, the Supreme Court ruled that any ban on same-sex marriages were unconstitutional.
Spangenberg and Chappell were married later that year in Maryland.
By the way, it wasn’t the last time Spangenberg and Chappell found their way into the Supreme Court for landmark decisions. They were also there when justices upheld Obamacare the second time, two days after the Obergefell’s decision. At that point, the couple had captured the attention of a reporter from USA Today, who wrote about their Supreme Court vigil.
“There is no pity party in this office,” said Jennifer Laszlo Mizrahi, who founded RespectAbility about six years ago. “We have super-high expectations here.”
RespectAbility is nonprofit and nonpartisan. But it aims to educate, and part of that educational process puts Spangenberg is touch with congressmen and senators. Mizrahi said Spangenberg’s experience in sports makes him a natural team leader, the perfect person to lead her agency’s National Leadership Program.
RespectAbility cycles through three teams of young potential leaders with disabilities each year. They learn about advocacy. They learn about how government works. They learn how nonprofits work. Spangenberg takes the groups to advocate meetings with representatives from Congress and the Senate. The goal is to meet individually with each one of the representatives.
“That’s 535 offices, three times a year,” said Mizhari.
She said members of each group have various types of disabilities — RespectAbility differs from many other organizations that represent people with specific disabilities. Because of that, she said the organization speaks for about 56 million people.
The organization specifically seeks to promote policies that will put more disabled people into meaningful jobs. That starts in the educational system, which she says does not adequately encourage or train disabled students for the workforce. Mizrahi said that only 7 percent of adults with disabilities have college degrees. Spangenberg said that 7 of 10 working-aged people with disabilities are unemployed.
“Disability is the only minority group that a person can join at any time in their lives,” Spangenberg said.
Mizrahi said Spangenberg is an inspiration and a leader for the cause. And it’s one of the reasons RespectAbility sent him out on the campaign trail in 2016, where he stumped on behalf of the disabled for several weeks in Iowa and New Hampshire. He followed candidates from one event to the next, asking questions whenever they called upon him.
“He is so accomplished,” she said. “When he was young, the expectation was that he would not work and he would always be unemployed. He didn’t want that for himself and he doesn’t want that for others. He is such an important player on our team.”
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