By Kris Kitto - 03/10/10 11:00 AM EST
Their day starts before 8 a.m., when they meet Rep. Gregg Harper (R-Miss.) on the Capitol’s east steps for the standard group photo. The roughly 150 advocates for Fragile X syndrome huddle together with Harper for a few quick shots before they fan out across Capitol Hill to educate members of Congress on the genetic disorder and ask that federal money be directed to research and public health efforts for the condition.
But on this March day, before they knock on lawmakers’ office doors, these grassroots representatives — Matt from Alabama, Paula from New Jersey, Dylan from Maryland, Ruth and Irwin from Illinois and their colleagues from 30 other states — will sit in the seats of the elected few while Harper treats them to a special briefing from the House floor.
The freshman lawmaker’s 20-year-old son, Livingston, was born with Fragile X syndrome, a genetic disorder that causes behavioral, developmental and language disabilities across the affected person’s lifespan. Harper, who, with Reps. Bill Delahunt (D-Mass.) and Phil Hare (D-Ill.), is a co-chairman of the Fragile X Caucus, has become one of the legislative body’s biggest champions for research of and a cure for the disorder. Of the few times he has been able to lead groups onto the House floor — an infrequent occurrence for members — Harper has asked Fragile X advocates onto the otherwise members-only space twice.
“It’s a wonderful day because I get to see a lot of friends — like these two,” Harper says in a first-floor hallway of the Capitol, greeting the advocates as they make their way through security. He points to Tracy Stackhouse and Mouse Scharfenaker, the co-founders of the Developmental and Fragile X Resource Center in Denver, and explains that they are two of the first Fragile X professionals he and his family met when his son was diagnosed with the condition.
“Oftentimes the fathers take on the role of becoming really strong advocates — but nobody’s done it like this guy,” Stackhouse says, pointing back to Harper. For as long as they’ve been working on Fragile X, Stackhouse and Scharfenaker say the Washington advocacy day is a highlight and admit they’re “very excited” to go on the House floor.
A crowd has begun to form on the first floor as advocates continue to stream in through security, and Ruth and Irwin Danz of Willmette, Ill., survey their comrades. They speculate that they might be the only grandparent advocates in attendance — they have a grandson with Fragile X — and are stumped when asked if they’ve been on the House floor before.
“No, I don’t think so,” says Ruth, 75.
“Maybe in high school,” says Irwin, 78.
Even Dr. Randi Hagerman, whom Harper calls one of the country’s leading physicians on Fragile X, expresses joy at the prospect of visiting the House floor.
“It is very exhilarating,” she says.
Harper finally gets the go-ahead to lead the group up to the chamber for its special visit. Advocates gaze up at the frescoed ceilings, touch the brass railings and stop to stare at the portraits of austere statesmen that line the members’ staircase.
“Check this out, Joel,” one advocate can be heard saying to a companion. “Check these paintings out. This is the real deal.”
“I’ll say,” Joel answers.
“You can’t say, ‘The Taj Mahal it isn’t,’ ” Joel’s friend says back.
People take deep breaths and utter a few self-conscious “wows” as they pass by the U.S. Capitol Police guards, drop their bags and coats in the Speaker’s Lobby and push through the heavy wooden swinging doors to the House floor. One woman trips up the stairs to the seats and offers a self-deprecating, “Graceful as ever.”
Harper puts the group at ease, showing them that the podium in the well of the House can be raised and lowered like a barber’s chair. He turns off his BlackBerrys and cell phones and makes a joke about his daughter calling him “a nerd” for all of the communications gadgets he carries. And he becomes chief coordinator, stating that the time is 8:40 a.m. and figuring out who needs to get to meetings on the Senate side of Capitol Hill by 9 a.m.
“This room has been in continuous use since 1858,” Harper begins. But as he does that, one of the floor attendants turns on the electronic board that displays every member’s vote, a feature that spans the wall of one of the House’s visitors’ galleries. Advocates ooh and aah.
“I think the board must’ve lit up behind me, judging by your faces,” he says, segueing smoothly into a tutorial about how members vote. He pulls out his voting card.
“This is the most expensive credit card in the universe,” Harper says as he takes someone from the audience to help him dip the card in the voting machine attached to one of the seatbacks. A green bar lights up next to Harper’s name on the voting board. Advocates give an interested “Hunh.”
Harper continues to talk about floor procedure, congressional history, the State of the Union address and various other topics, but interrupts himself when he sees Delahunt come onto the House floor.
“I want to introduce one of my heroes here,” Harper says as Delahunt approaches the podium.
The Massachusetts lawmaker gives a quick and vigorous — if typical — rah-rah speech that ends with, “You’re my inspiration; thank you,” before Harper continues his briefing.
Harper reminds the advocates of the significance of their House floor visit — “The next time you’re watching C-SPAN, you’ll say, ‘Hey, I was in that seat’ ” — and takes a question (Does each member have an assigned seat on the House floor?) before having to wrap up the briefing at the sight of Rep. Lee Terry (R-Neb.), who’s waiting to bring in a group of students.
“Lee Terry, you got a group coming in?” Harper says. “We’ll be out in un momento.”
Harper ushers his advocates off the House floor and lets them loose for their day of meetings.