WASHINGTON — A pair of handcuffs is tucked into one side of Daniese McMullin-Powell’s wheelchair — as always. She keeps a stash of about 150 pairs at home in case she needs to attach herself to a fence to hold her ground when others want her to yield.
She won’t need the handcuffs in this protest, though. Her job will be more pedestrian, if you can say that about someone who gets ‘most everywhere in a power chair.
McMullin-Powell, 61, of Newark, will be a negotiator and strategist as members of ADAPT — American Disabled for Attendant Programs Today — converge on Capitol Hill to seek support for legislation they believe will allow people to avoid life in a nursing home.
Hundreds of demonstrators are in this Monday morning entourage, which starts at a Holiday Inn near the National Air & Space Museum and makes slow, traffic-stopping progress to its target about a mile away — the Rayburn House Office Building.
McMullin-Powell, the lone Delaware representative, is at the end of the line, anchoring a strand of humanity that has traveled from all over the country to be here.
Most are in power chairs. A few use walkers or canes. Some bring attendants, friends and family members, some have no visible means of support.
They carry signs, shout slogans, blow whistles. Some roll in silence, allowing their T-shirts to speak for them. Their messages are simple: “Our homes, not nursing holes!”
“Not dead yet” and “Piss on pity.”
And, most often, “Our Choice. Community Choice. Act Now.”
ADAPT says the Community Choice Act will remove the nursing-home bias built into federal funding that assists those with disabilities. Robert Kafka, an ADAPT leader from Austin, Texas, says almost 70 percent of that Medicaid money ends up in nursing homes.
The protesters make their way past the Voice of America building, move in fits and starts past the Department of Health and Human Services and fill most of the right lane on Independence Avenue.
They roll into the driveway of the Rayburn building, where Rep. John D. Dingell, D-Mich., and Rep. Joe Barton, R-Texas, have their offices. Three groups — about 60 demonstrators — already are inside the building by the time McMullin-Powell arrives.
It is a carefully planned action, with logistics known only to ADAPT’s top leaders, including McMullin-Powell. She wears a headset, through which she receives regular updates from leaders stationed elsewhere.
By about 11:15 a.m., the groups inside Rayburn have occupied the congressmen’s offices and a hearing room of the House Committee on Energy and Commerce, where Dingell is chairman and Barton the ranking member.
The navy blue uniforms of the Capitol police appear in greater numbers. One is carrying an assault rifle. Demonstrators have to decide whether to leave the area or stay. If they stay, they will be arrested.
‘A sense of injustice’
McMullin-Powell wasn’t interested in getting arrested when she first took up with this bunch 11 years ago. She was on permanent Disability with post-polio syndrome, and had been reading Joe Shapiro’s book “No Pity.” In it, she learned about ADAPT’s efforts to promote the rights of those with disabilities. The work made sense to her and she decided to go to Atlanta for one of the group’s events.
She got arrested twice.
“It was just too inspiring,” she said. “You can’t be in the middle of people like that and not do what they’re doing. You can’t back off when you see the passion they have. There was a sense of injustice as to what was going on — and that hasn’t decreased at all.”
Ninety-nine demonstrators in this day’s protest — including those inside — will be arrested. McMullin-Powell wouldn’t mind being among them but her assignment here is to shepherd those who want to be part of the action, not the police log.
“She’s a good friend to a lot of people,” said Roxan Perez, 52, of Brookfield, Wis., who is a cancer survivor with Multiple Sclerosis. “She’s always solid, and she doesn’t say anything that isn’t worth saying. She does what she needs to do. She’s a role model of mine.”
Perez — whose service dog, Max, is a poodle/Bichon mix that can pull her chair almost a mile if necessary — works the line, offering sunscreen and mist from a spray bottle to those feeling the effects of the sun.
Perez spent six days in a nursing home when her family thought there was no other option.
“A lot of people don’t know there are options,” she said. “We need more advocates inside nursing homes. … [ADAPT] gives people choices like everyone else has. We are getting more money, but the majority of it still goes to institutions.”
McMullin-Powell has been fighting this battle — and the battle for accessible transportation and integrated housing — on the front lines nationally and in a quieter way in Delaware, where she founded the state’s chapter of ADAPT and leads the State Council for People with Disabilities.
“ADAPT is my passion,” she said. “The state council is an outlet for that passion, but a bit more subdued because it’s with the state.”
Her family and friends sometimes roll their eyes when they hear of some of her activities, she said. And she is frustrated by the lack of involvement in “wimpy” Delaware.
“But a lot of my friends want to be more involved and just can’t,” she said. “I guess they don’t quite get that little bit of an edge they need to put them over.”
Persistence and perseverance
Today, as McMullin-Powell and her Labrador, Inky, circle Capitol Hill with the line, they pass places that are far more than tourist attractions to her.
She remembers camping overnight in front of the Supreme Court in 1999 so she could hear the arguments made in the Olmstead case, now a landmark decision that requires states to allow people with disabilities to live in the “least-restrictive” Environment.
She remembers spending a night in 20-degree weather outside the Department of Health and Human Services.
She remembers handcuffing herself to the fence outside the White House, when ADAPT wanted Bill Clinton to allow federal funds to follow the person they supported, instead of going to a program or a facility. Al Gore came out and talked to the group that day, she said, and the money stream has started to shift.
She knows many of those around her from previous actions — including the times they lay down in front of Greyhound buses to insist on accessibility — and many know her.
Some, like Cassie James of Philadelphia, were born with a medical condition.
“I’m mostly here because I think nursing homes are the most horrific human rights violations in our country,” said James, who has spina bifida. “Look what we take for granted — our dignity and control and the ability to live life the way we choose. If we had the supports, we could be as free as anybody else.”
Others, like Ben Barrett of Trego, Wis., joined the disability community later in life.
Barrett, 49,was mugged, beaten and left unconscious on railroad tracks in Appleton, Wis. He was hit by a train, lost his left arm, had all but one rib broken, his lungs punctured, five Vertebrae crushed, and sustained a compression fracture in his neck.
His “spark got lit” for this mission when he was about to leave the Rehabilitation center. Officials planned to send him to a nursing home for six months, at $3,000 per month.
“But I had friends who came and built a ramp to my house,” he said, his voice quavering. “It was no more than $800. … What’s cheaper for America?”
‘Waiting 10 years’
Out in the Rayburn driveway, a longtime Dingell aide — Bridgett Taylor — is meeting with Kafka and ADAPT leaders including McMullin-Powell.
ADAPT insists Dingell schedule a hearing on the Community Choice Act, which was introduced in 1997 and has languished ever since. Dingell, though supportive of Medicaid, has ignored their letters and requests, Kafka says.
“We’re not going to leave until we get a commitment,” said Kafka, who had a spinal-cord injury that left him with Quadriplegia.
Taylor tells them she can’t reach Dingell; he’s out of town. She promises to talk to him Tuesday, to “exert every bit of energy I have to get him to hold a hearing on it.” She starts to cry.
At 11:51 a.m., police Capt. Mark Sullivan asks the group to “cease and desist” or arrests will follow. He is firm but polite.
Kafka, who has been arrested 35 times before, stays put with several dozen others. He is polite but firm.
“People have been waiting 10 years,” he said.
McMullin-Powell puts her chair into gear and heads to a nearby park with those who have decided not to be arrested. They watch and cheer as police escort their comrades — one by one — down the street to a door on the ground floor of Rayburn, where they will be processed.
Bystander Shane Piccinini, who works with a civics education program in Nevada, watches from the sidewalk.
“I’m a little leery of a one-size-fits-all policy,” Piccinini said. “But these folks have a long row to hoe — and they don’t have Bono to draw attention to their cause.”
The demonstrators are hungry, thirsty and trying to find shade, but nobody whines — not publicly anyway.
“People in nursing homes are counting on us,” Mike Oxford, 49, of Lone Star, Kan., reminds them through a bullhorn. “If you get hot or inconvenienced, think about them.”
They cheer and another chant begins: “I’d rather go to jail than die in a nursing home.”
An hour later, the queue heads for the hotel, taking a longer route to distribute more leaflets and spread their message a little further.
“If they don’t see us, they don’t mind us,” Barrett says. “That’s why it’s so easy to put us in an institution.”
McMullin-Powell, bringing up the rear again, looks at those around her. Some are drooling. Some have twisted faces. Some look defiant, some triumphant.
“I love these people,” she says.
And she hopes to be in their company for years to come.
“It’s my life,” she said. “I live it every day. It’s not something you can retire from.”
She puts her chair in gear and rolls — behind them all the way.
By BETH MILLER, The News Journal