METRO
DC MD VA S
WEDNESDAY, SEPTEMBER 17, 2003 B3

[Headline] Going the Distance for the Disabled

[Subheading] 144-Mile March Urges Right to Live Free of Institutions

By DARRAGH JOHNSON
Washington Post Staff Writer

Already, they had cruised 128.6 miles in their wheelchairs and eat-en too many jelly doughnuts for breakfast and too many peanut butter and jelly sandwiches for lunch. "I can't wait to have a hoagie," fantasized Topeka, Kan., res-ident Jo Ann Donnell yesterday morning, "with Genoa salami with provolone. That, and a scotch and soda."

They had endured rain-soaked pillows and sunburned forearms and cars whizzing by way too close for comfort. And every night for almost two weeks, these 250 advocates for the disabled had wheeled into their campsites, plugged their chairs into chargers and spent the next 10 hours on their cots, sacrificing mobility for the chance to make a statement.

Now there they were yesterday morning, lined up in blue tents next to a driving range in Beltsville, eating more jelly doughnuts and getting ready for another six hours. Another 10 miles. Another day of clogging traffic along one of Maryland's busiest roads, Route 1, as they zoomed two miles an hour in the right-hand lane and chanted, 'Free Our People!'

In the midst of the preparations was co-organizer Bob Kafka, whose wild white hair and beard gave him an added presence as he turned on his cordless microphone and cried, "Today . . . we're heading to D,C.!"

He started waving a piece of pa-per, as cheering erupted around him, and men in ball caps and women in chic, Juicy Couture-esque sweat suits and red-spangled sandals leaned closer. "I have a letter here, dated September 15, on White House stationery," he continued, and with the mention of "White House," the crowd immediately quieted down.

On Sept. 4, the members of the advocacy group ADAPT had started this 144-mile wheelchair march at the Liberty Bell in Philadelphia, and with every town they stopped in, they tried to whip up support for bills in the U.S. House and Senate that would "allow all Americans to receive long-term care services in their own homes, instead of being forced into nursing homes, as they are under cur-rent Medicaid policy," as their mission statement on their Web site describes.

Currently, Medicaid funds automatically pay for nursing homes, but the funds can be diverted to pay for home health care only by the most diligent and seemingly connected of patients. So nearly all the march participants live in fear that someday if, for example, pneumonia further disabled them, they would be forced to spend the rest of their lives in an institution.

"I would rather die," said Terri Stellar, 40, her voice cracking and her eyes tearing up as she talked. "I would rather die than go into a place like that."

She knows because she was there, she said. Stellar, a social worker in Austin, was in a car accident four years ago that broke her left hip and foot and landed her in a rehabilitation hospital that she said was no different from a nursing home. She was supposed to spend two weeks there. She spent three months, until the insurance money ran out.

"We would like to invite you and five of your fellow representatives of ADAPT back to the White House," Kafka read, to continue our discussion . . . of policies to promote home and community-based care for individuals with disabilities. We have reserved the Lincoln Room at the White House Conference Center."

"The letter is signed," Kafka finished, "by the special assistant to the president!"

"Whoo hoooo!" surged the group. Everyone was tanned after almost two weeks in the sun. On every third chair flapped an American flag with the stars arranged in the shape of a person in a wheelchair, and chanting started up: "Free Our People! Free Our People!"

From there, the chairs wheeled toward Route 1, where three Maryland State Police cruisers and a Prince George's County police car waited with lights flashing to escort them to the District line. The mood was cautiously jubilant. Just one more day and 14 more miles before their big rally this afternoon on Capitol Hill, where they hoped Congress members and 5,000 supporters would show up to join them. Already, Sens. Tom Harkin (D-Iowa) and Arlen Specter (R-Pa.) and Reps. Danny K. Davis (D-111.) and John M. Shimkus (R-111.) have sponsored legislation to help their cause.

But on whether anything will change dramatically as a result of this odyssey that brought advo-cates from all over the country

[image]
[image caption] BY SUSAN BIDDLE--The Washington Post. Advocates for the disabled make their way along Route 1 In Maryland en route to today's rally In Washington.

[text resumes] from Salt Lake City and Boulder, Colo., and Missoula, Mont., and West Haven, Conn.-46-year-old Albert "Sparky" Metz was reserving judgment. "Actions speak louder than words," he said gravely.

Cerebral palsy has garbled his speech to the point where he often needs his attendant, Andy Rowe, to "translate" for him. But after spending his childhood in a state-run home in Oklahoma, and his adult years until 1990 in a nursing home, Metz uses whatever plat-form he can find to describe the difference between life in an institution and life on his own.

"Freedom," he said, straining back his head. In the institution, he said, "I had to tell them where I was going." But today, he lives in a duplex in Austin with his wife, Laurie, and their dog, Elvira, "and now I go shopping, and (or walks around Town Lake." He has visited Hippie Hollow, the nudist colony near his house, and wheeled his chair to the edge of the lake. Though he hasn't gone skinny-dipping—"it isn't accessible," he said—he didn't wear a shirt for the occasion.

But better than just the freedoms of movement and decision-making, he said yesterday, surrounded by friends in chairs, is the freedom he now has to make a difference.

"Ten years ago..." he said, the words pushing forth with more vowel sounds than consonants, requiring the listener to lean in and concentrate. "Ten years ago, Austin didn't have accessible cabs." Today, Austin does. "And l—he smacked his heart with his hand, beaming—"I helped with that."

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Thursday 18 July 2013

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Friday 27 November 2020

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• Free Our People March, 144 miles Philadelphia to DC, September 2003

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