NR: How Disabled Activists Turned the Fight for Medicaid into a Battle for Civil Rights

With Great THanks....Yet Once Again, to ADAPT and the National Disability Advocacy Community
NYAPRS E News September 28, 2017

NYAPRS Note: Over all of the 30 years that I’ve been a mental health advocate, there has been no stronger single force in the effort to lead on disability policy advocacy that affects the rights, health and lives of Americans with disabilities than ADAPT. No group has been as skilled and timely and tough….and has the capacity and the imperative to almost instantly galvanize into action when all is on the line, in this case not only for Americans with disabilities but for all American healthcare consumers…which means everyone.

We owe ADAPT and all of our friends in the national independent living and disability advocacy community an immense and profound thanks for their leadership and inspiring example. Beyond public education and policy change and health and rights advocacy….they truly save lives!

Pardon the lack of people first language in the pieces below. You can click on their links to see the inspiring photos.

I especially liked the excerpts that follow: “ADAPT’s protests aren’t designed just to defeat legislation, but to defeat the ideology that inspires this legislation. ADAPT’s activists don’t want pity. Pity reduces, dehumanizes. Every arrest, every dragging, every shout, displays strength and not weakness. They merit neither pity nor worship; only respect, and your dedication to a different, fairer world.”

Here’s also a link to some of more major coverage on ADAPT’s transformative advocacy that helped protect the health and lives of all Americans last week:

Arresting Disabled Bodies
How Disabled Activists Turned the Fight for Medicaid into a Battle for Civil Rights
By Sarah Jones New Republic September 28, 2017

The woman in the wheelchair is resolute. Her voice does not waver; her message does not change. “No cuts to Medicaid!” she shouts. “Save our liberty!” She is a rock, borne away by a police officer who grips the handles of her wheelchair. Behind her, another activist follows, with the same chant, with the same resolution on his face. “Save our liberty,” they say, and it is not a plea. It is a demand.

This is one moment, but recently there have been many like it, constituting some of the most effective protest imagery in recent memory. The woman in the video is an activist with National ADAPT, a group that has harried Congress with one legislative objective: to defeat every iteration of Obamacare repeal that Republicans propose. So far, they’ve won, but in many ways the war has just begun. ADAPT’s protests aren’t designed just to defeat legislation, but to defeat the ideology that inspires this legislation. And so they ask you to consider other questions. They ask you to think about yourself.

In form and in function, ADAPT’s recent protests resemble the Capitol Crawl in 1990. That protest, accomplished by activists who pulled their bodies up the steps of the U.S. Capitol, helped force the passage of the Americans with Disabilities Act. ADAPT was a part of the crawl, and had been participating in such direct actions since the 1970s. Dominick Evans tells me that ADAPT’s confrontational tactics are modelled after those deployed by the civil rights movement. “It’s very effective at getting the message out,” Evans explains. “They can’t ignore it if they’re constantly arresting disabled bodies.”

ADAPT’s protests simultaneously acknowledge and subvert the spectacle that able-bodied people make of disability. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in “Illness as Metaphor.” Though Sontag chiefly examined cancer and tuberculosis, society implies a similar bifurcation between individuals who have disabilities and those who do not. Living with an inherited disease, I learned long ago that people who dwell in the kingdom of the well impose their own meanings on the kingdom of the sick.

When people look at a woman in her wheelchair, they may experience pity. To them, people with disabilities exist either to demonstrate the mystery of God or the capriciousness of biology. But their pity is driven by the deeper fear that some accident or onset of permanent disease will shunt them into this shadow kingdom and there will be no escape.

ADAPT’s activists don’t want pity. Pity reduces, dehumanizes. Pitiful people are objects and objects cannot fight. When people with disabilities protest, then, in public and physical ways, they grab hold of old stereotypes and point them back at their creators. “We are putting our bodies and our lives on the line for this, but we know what we’re getting into,” says Anita Cameron, an ADAPT activist who participated in the Capitol Crawl. “I think that’s the message that needs to be sent out, because everybody looks at, ‘Oh, those poor disabled people, getting arrested! Oh, those poor disabled people, being pulled out of their wheelchairs.’ No, we’re not those poor disabled people. We are strong, fierce activists fighting not only for ourselves, but for others too.”

The goal of these protests is not to replace one spectacle with another. Integration is one of ADAPT’s original, enduring aims, which means they hope to create a world that treats disabilities as if they are banal. “When I say live, I mean to truly live. To live in the community, to work, to raise a family, to have cats and eat a ridiculous amount of pizza rolls and cheeseburgers like I like to do,” one activist recently wrote in Vox. Disability isn’t a superpower any more than it’s evidence of innate inferiority. “I don’t think any of us want people to be thinking about our bodies in general,” Evans says. “What they need to be thinking about is that people are going to die. It’s life or death.”

In the United States, disabled bodies are disposable, a guarantee of perpetual second-class status. Whether via institutionalization or sterilization or a lifetime spent bearing “pre-existing condition” about the neck, living as a disabled person in this country has historically meant living subject to a specific bureaucratic evil. Our market-based health care system is concerned with profit, and it long ago decided that disabled bodies are not worth very much. Whenever that paradigm has shifted, it is because the people who own these bodies have jammed the gears. And they will continue to do so until we collectively agree that health care is a human right.

Every arrest, every dragging, every shout, displays strength and not weakness. They merit neither pity nor worship; only respect, and your dedication to a different, fairer world.

Protests, Arrests Immediately Derail Only Senate Hearing On O’Care Repeal Bill
Alice Ollstein Talking Points Memo September 26, 2017

Just after the gavel struck to open the Senate’s only hearing on the Graham-Cassidy Obamacare repeal bill, a group of activists in wheelchairs with the disability rights group ADAPT, broke out into loud chants of “No cuts to Medicaid, save our liberty,” bringing the proceedings to a grinding halt.

As Capitol Police officers dragged the protestors out of the hearing room one by one, they continued to chant at full volume. Finance Committee Chair Sen. Orrin Hatch (R-UT), visibly frustrated by the demonstration, banged the gavel repeatedly. “Do you want to have a hearing?” he asked.

When they protesters did not quiet down, he put the committee officially in recess and left the room. Many Democrats and Republicans on the committee remained on the dais, quietly watching the demonstration unfold.

As soon as the last protester was removed, Hatch sat back down and gaveled the hearing back in. “Let’s have some order,” he said, as the chants continued to drift in from the hallway outside, where arrests continued. “If you can’t be in order, get the heck out of here.”

The U.S. Capitol Police announced later on Monday that they had arrested 181 protesters in total—15 in the hearing room were charged with “disruption of Congress” and more than 100 others were charged with blocking the hallway and resisting arrest.

“Several of the demonstrators, as part of their protest activities, removed themselves from their mobility devices and lay themselves on the floor, which resulted in USCP officers having to reunite demonstrators with their mobility devices,” said the Capitol Police.

Before the hearing began, one of the ADAPT demonstrators told TPM that he had traveled all the way from Kansas to show his dissent to the bill the Senate may vote on this week, particularly its cuts to traditional Medicaid.

“Medicaid pays for the home care services that people with disabilities need,” Mike Oxford said. “The money will shrink. Those block grants are going to go away. States will not replace that money. States have proven that they’re not as good at protecting, planning, and overseeing these programs. The states have been in charge and they suck at it. That’s why we want federal protections. That’s why I’m here.”

“We have this spirit in us to stand up for ourselves:” The scene at the Graham-Cassidy protests
By Will Drabold September 26, 2017

Lopeti Penimaani was outside the Dirksen Senate Office Building at 6 a.m. Monday. Penimaani, who flew in over the weekend from Utah, was determined to be on the ground to participate in Adapt’s last push to kill Republican health care reform efforts.

Penimaani, 57, said he has been to about two dozen protests over the year to pressure lawmakers to preserve or enhance rights for Americans with disabilities. With a degenerative neurological disease, Penimaani can only take a few steps without the assistance of a wheelchair.

With cuts to Medicaid, he said, people with disabilities would lose the funds to pay for care in their homes — forcing them to be institutionalized. “It allows us to live like any other American,” Penimaani said. “We have this spirit in us to stand up for ourselves.”

No one would doubt the spirit of Adapt protesters and other demonstrators Monday outside the Graham-Cassidy hearing. Adapt, a disability rights group, had by 9 a.m. Hundreds more trickled in before the hearing began at 2 p.m.

Mass chaos ensued. In a hallway about four paces wide, protesters in wheelchairs locked themselves in place and were carried out of their devices by police officers. Chants of “No cuts to Medicaid” and “Health care is a human right” filled the halls. Screams of protesters saying Medicaid cuts would kill them echoed outside the hearing. Other demonstrators were handcuffed and dragged along the shiny stone floor frequently traveled by U.S. senators.

Sens. Lindsey Graham (R-S.C.) and Bill Cassidy (R-La.) faced chants of “shame” as they walked in and out of the hearing, which lasted well into the evening after Sen. Susan Collins (R-Maine) became the third Republican to oppose the bill, .

As the chants heated up in advance of the 2 p.m. hearing, Danielle Campoamor supervised her son Matthias using crayons to mark up a large, printed version of Graham-Cassidy’s first page. Earlier in the day, Sen. Kirsten Gillibrand (D-N.Y.) helped Matthias and other children write “horrible” on the bill.

Campoamor, 30, traveled from Brooklyn, New York, to protest the bill’s total funding cut to Planned Parenthood. She said the organization provided birth control when she was 15, counseled her after a sexual assault, performed an abortion at 23 and helped to prepare her for Matthias’ birth at 27.

“I’m a mother because of Planned Parenthood,” Campoamor said. “I wouldn’t have my family without them.”

Hours after protesters had been removed, Cassidy ducked out of the hearing room to head to the Senate floor. As a door opened to reveal him, he looked both ways in the hallway for protesters and smiled at the police officer guarding the door.

Protesters pursued Cassidy as he fast-walked toward a bank of senator-only elevators. Sen. Dean Heller (R-Nev.) had emerged earlier and told activists the bill did not cut Medicaid.

I asked Cassidy four times whether his bill cuts Medicaid. He would not respond.

View videos and photos from yesterday’s protests at