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[youtube https://www.youtube.com/watch?v=nvNbXhqUOJg&w=720&h=405]

The keys to the National Republican Party Headquarters were dangling in the doorway to the exclusive “Capitol Club.” I instinctively grabbed them out of the lock and tossed them to Mike Auberger.

Suddenly, at least, the security personal were happy to come out to talk with ADAPT.

The heart of direct action is taking action. At the end of October 1998 in Washington DC, ADAPT was striking back to help preserve the Americans with Disabilities Act and the gains we had made in transportation.

Just 8 years after the historic civil rights legislation became law, Georgia was attempting to erase the “integration mandate” from the ADA. The state argued in federal court that institutions were appropriate places for people with disabilities – and they had won. The Olmstead case would go to the Supreme Court in early 1999.

Many people spoke of how the ADA had attempted too much. They used language similar to those who opposed lifts on buses. Rather than “local option,” adversaries lectured about “unfunded mandates” and “states rights.”

They said the momentum was gone from the ADA and, frustrating especially to ADAPT’s history, the American Bus Association was suing to stop the mandate for lifts on all new buses. People with disabilities had made significant gains over the past few years; maybe progress should slowdown?

Action, however, is what ADAPT is about. Hundreds of ADAPT activists flooded into Washington DC to regain the initiative with the message that we will be the ones to define our rights.

Direct Action had proven very successful in establishing equality in transportation. Wade Blank explained that in cities like Denver that used Direct Action, the transportation systems made commitments to accessibility. Cities without direct action of people with disabilities demanding equal access were lagging noticeably behind.

Cross-country buses, notably Greyhound, were using their lawyers and a tactic of delay to avoid regulations to make over-the-road buses accessible. On the final day of the fall action, a team of about 30 ADAPT activists negotiated all day with the American Bus Association. The ABA’s office is the old Greyhound Terminal in Washington DC where most of us chanted for hours in the acoustically amplifying giant marble foyer. The ABA gave up, and ADAPT had secured a meeting with the ABA president, after the police came and prepared to make hundreds of arrests.

The day before, ADAPT demanded that the Department of Health and Human Services, specifically the Healthcare Finance Administration (HCFA), that runs Medicaid, stop backpedaling on enforcement of the ADA “integration mandate.” Activists had spent the day in a tussle, as General Service Police Officers pulled people from doors and out of wheelchairs. One entrance at a time, the officers and activists pushed and filled empty space. It was a non-violent dance of authority and passion.

Of course, about 40 activists had the parking garage blocked, and as the end of the business day came near, HHS administration and the officers realized that they couldn’t play the same game with the parking lot. As soon as they pulled someone out of the drive, another adapt activist would take their place and keep all the cars bottled up.

When HCFA realized they had to negotiate to get home, John Callahan, the Assistant Secretary of Management and Budget, invited an ADAPT team in to work out the details. When that team refused to accept the first draft of an agreement, the activists inside only had to point Mr. Callahan to the window, where he could see and hear ADAPT’s passion and commitment. He realized that ADAPT meant what they said, and agreed in writing that ADAPT would meet with the Secretary herself. Each one of us played a role that day.

The part of this action that I remember best is the small role I played at the National Republican Party Headquarters. On the first day of action ADAPT split into a bipartisan force and hit the Republican and Democratic national headquarters. The direct goal was support of MiCASSA, but everyone wanted to make a clear statement that institutionalization is discrimination like the ADA says.

I remember this well because, before we actually blocked the doors to the National Republican Headquarters, we were attempting to crowd into the building. In the struggle at the front door, a security guard had left the keys hanging in the door and I grabbed them and tossed the keys to Mike.

The security personnel threatened to have me arrested on all kinds of felonies, but I had no idea where the keys were. They could identify me as the person who grabbed the keys, but they didn’t know what I did with them.

Mike Auberger did all the talking, and they grilled him about the keys. Mike never lost the focus on why ADAPT was there, and turned all the Republican Party folks questions back to support for our legislation.

For all I knew, Mike had the keys right there with him.

ADAPT got letters of support from both the Republicans and Democrats that day. But the un-quantified success of the October 1998 action was that ADAPT had sent the message to the disability rights community, and to the nation that we would not accept a slow unraveling of our civil rights. We demanded equality. We were going to fight Olmstead and we were going to win.

As the hallways of the Crystal City Hilton filled with ADAPT activists arriving from all over the country, the excitement was palpable. There was something special about this action. It would culminate on May 12th in the “Don’t Tread on the ADA Rally.”

The rally was in support of the ADA’s “most integrated setting mandate” and of Lois Curtis and Elaine Wilson – LC and EW in the “Olmstead vs. LC & EW” case. The two women had been fighting the state of Georgia for the right to live in their own homes rather than being locked up in institutions. On April 21 the Supreme Court had heard the case. We had held an all-night vigil at the steps.

I got to the action already exhausted. The last few weeks had been hectic. Not only had I been working incessantly correcting finals and handing in grades, but my life partner, Danny Robert, and I had been frantically organizing our NYC people, and negotiating with Amtrak to get the seats removed in two cars in order to accommodate 60 wheelchair users, all going to the rally.

At the big meeting, on Sunday, I was re-energized. When Stephanie announced that all but 7 of the 26 states that had supported Georgia had withdrawn their support, the house roared.

I was a red color leader. So, after the meeting, I tore pieces of red tape off a big roll and stuck them on the armrests of people’s wheelchairs, on canes and crutches or, in the absence of mobility aids, on hats and shirtsleeves.

On Monday morning we headed for the metro. The DC area metro, compared to the nightmarish NYC subway, is a wheelchair rider’s delight. Still, when there are hundreds of wheelchair riders, the delight can turn into a nightmare. Color leaders had the hard job of getting everyone on and off.

We were split into two groups. One group went to hit the Council of Mayors. My group’s target was the National Governors Association. At the Hall of States my team took the parking garage. We chained our wheelchairs together, forming a tight blockade, chanting, while the cops stood watching. The garage was quiet until around 4:30. Then people started appearing behind us. One lady politely asked: “Would you please move so I can get my car out?” A tough guy grabbed the back of my chair and shook it. “We’re ADAPT! You’re trapped! Get used to it!” we chanted. But I admit I got nervous when I heard engines starting.

We were arrested and taken to a big, ugly, stuffy room. There have been so many big, ugly, stuffy rooms where we’ve been held and processed through the years that in my mind they all blend into one big, ugly, stuffy blur. We didn’t get back to the hotel until 2 AM.

Fortunately, Tuesday turned out to be an easy day. We didn’t get moving till after lunch. Our target: HUD. We were lined up at the doors for about 2 hours while inside our leaders were negotiating. Then Barb Toomer read us a letter guaranteeing a meeting with director Andrew Cuomo within a month.

Back at the hotel, I called Danny. He said everything was under control. The NYC group would arrive at Union Station at 10:15. “I’ll be there to meet you,” I told him.

On Wednesday, the big day, I sat on the platform waiting anxiously for the train. And then there they were, rolling off the bridge plates, all with big smiles on their faces. Danny too was smiling but looked tired.

As we single filed out of the station, the sun was shining bright and the notes of a familiar song filled the air. A man with a trumpet, one of the musicians hanging around the station, seeing our “ADAPT New York” banner, had started playing “New York, New York.”

At Upper Senate Park, we were greeted by more music. Our own Johnny Crescendo singing “Proud, Angry and Strong.” We were already at least two thousand strong and more and more people were arriving from every direction. The Capitol Police would later estimate the crowd at 4000.

There were many speakers. I remember Senator Harkin getting us to chant “My control, not state control!” Steve Gold declaring: “We will win Olmstead!” Stephanie looking out at the crowd and exclaiming:” We are a beautiful and powerful force!” When Justin Dart proclaimed: “I’d rather die than live in a nursing home,” Danny yelled “me too!” We looked at each other. We both had tears in our eyes.

After the rally, we all marched to the Supreme Court.

On June 22, the Court would rule: Undue institutionalization is discrimination.

[youtube https://www.youtube.com/watch?v=1TT3ET5cSmE&w=720&h=405]

One by one the ADAPT warriors begin to arrive. My mind is whirling with excitement and curiosity because I knew the power of my ADAPT brothers and sisters.

It all began with a visit from the ghost of President Taft. I am certain he was restless because of the shame brought upon him by his Great – Great Grandson Bob Taft. Ohio was one of the 10 worst states in the country for their commitment to keeping people out of nursing homes. Activists, like myself, had worked for years to destroy the institutional bias, while being given many empty promises for change. I am convinced the Ghost of President Taft’s burdens were made heavier by the sins of his offspring.

Was redemption on the horizon? Governor Taft had promised to meet. Could it be that easy?

Monday morning came. I felt like David going off to fight Goliath with my army of 400 behind me. As we entered the Riffe building, the strategy was to deliver a message to Governor Taft that we were available for the meeting he had promised. As time went on and it became apparent that maybe the Governor was too afraid to make good on his promise, ADAPT settled in to wait for the governor to muster his courage. All I could think was that if he had ever lived in a nursing home or worried that he or someone he loved would ever have to he would know what real fear is and the courage to change the system would be easier to find.

The Police came in mass. I had heard stories about Ohio being a police state but never really understood that until that day. By this time, the building was locked down by ADAPT. I was on the Governors floor, with about 200 people; still more were down one floor at the Speaker of the House office. Ohio ADAPT has been working on HB 215 for years. OPASA was Ohio’s version of MiCASSA and the Speaker had the power to move it forward. There was a third contingency of ADAPT in the lobby. The police were everywhere and stalemating negotiations.

As the hours went by the police were negotiating for our “health and safety”. They knew that ADAPT wasn’t leaving without fulfilled promises or arrests. I was approached by the Sergeant who said they would open the bathrooms for our people and two minutes after that the scuffles began and police started to dump people who were waiting in line out of their chairs. Chanting started. “The whole world is watching you” echoed in the hall. Arrests began. Police once again came from everywhere, but this time with masks and goggles on their faces. One of them told me it was because they were afraid we were going to take our leg bags off and fling them at them! About 200 people were arrested that night.

The next morning, ADAPT was ready to take on The Ohio Department of Jobs and Family Services. As we marched up the street toward the Rhoades Building we were met with sideways snow and ice that pelted our faces. It was bone-chilling cold but ADAPT pressed on. When we reached the corner of the building we could immediately see that the Police had locked themselves in safe and sound. Those cowards! ADAPT was negotiating a meeting with the state Medicaid Director, Barb Edwards and her chief staff person Jackie Romer- Sensky.

After several hours of braving the cold and awesome chanting that could be heard for blocks, Edwards agreed to meet. However, apparently Ohio is a police state because the police took control, prevented continued negotiations and arrests began. Arrested ADAPT folks were taken to the fair grounds in sheltered workshop buses, processed and brought back to the hotel in the wee hours of the morning.

Barbra Edwards had actually kept her word and agreed to meet with five ADAPT folks. As we walked into the Rhoades Building State Troopers surrounded us. We were meeting with Barb Edwards, Jackie Romer- Sensky, and staff. The meeting re-opened the door to negotiations on OPASA.

I no longer live in Ohio, but as far as I know the court injunction is still in affect, which prevent more the five people in wheelchairs from entering a state office building.

[youtube https://www.youtube.com/watch?v=f3SzmXQPpiQ&w=720&h=405]

And what an action it was! Did the crosses and Jewish stars on Sunday presage the priest on Monday? Did ADAPT’s house calls remind the AMA about days gone by, and drive home the point that we want to live in our own homes, not institutions? Without question the ADAPT Woman Warrior negotiating team struck the first blow that resulted in the AMA finally endorsing the Community Choice Act after the 2007 Chicago action. The blood we left on the cement as people dragged their bodies up the steps of the Old Executive Office Building resulted in a meeting with Vice President Al Gore, then running for President. And on the last day, we demonstrated the saying, “Think globally, act locally.”

Here’s how it all unfolded….

After some ferocious stormy weather that delayed flights, Sunday dawned with sunny skies, perfect for our Voices and Faces Rally, where real people who had escaped nursing homes and other institutions spoke out for those still incarcerated, vowing to keep fighting until everyone was free. In addition, after some remarks by then head of Medicaid, Tim Westmoreland, hundreds of us marched to the White House, accompanied by “Father Time” and a huge hour glass.

We planted white crosses and Mogan Davids (star of David) in the White House lawn in memory of all those who had died waiting for freedom, and to give the President and Vice President a visual showing just an inkling of the thousands upon thousands still incarcerated by our failed Medicaid policy that promotes institutions instead of homes.

Every now and then ADAPT will split an action into two or three targets to be hit simultaneously, and that’s exactly what we did on Monday. A small group of about a hundred of us were ferried to a lovely, tree filled neighborhood outside of D.C., where we made a house call on Andrew Cuomo, then Secretary of HUD. Cuomo had promised to meet with ADAPT, and then failed to keep his promise. I guess you could say we are like elephants…we don’t forget!

So, taking care to “stay off the grass,” we packed the front walk and steep driveway with bodies, chairs, and beautifully colored chalk drawings that said “Our Homes Not Nursing Homes!” In one of the typically bizarre occurrences that seem to attend ADAPT actions, HUD chose to send a priest to negotiate with us. Surrounded by a cadre of local police and Secret Service agents, the priest and a HUD employee who came with him heard our story, and having heard, pledged to make Sec. Cuomo keep his promise to meet with us.

While the “Cuomo 100” was winning in the burbs, hundreds more ADAPT activists made a second house call on none other than the AMA. An all-woman ADAPT Amazon negotiating team hung in there to convince the very patriarchal, hierarchal AMA that we would not be dismissed with head pats, and we would not go away until they stopped patronizing us and agreed to meet to discuss how they can support community instead of sending people to institutions with the stroke of a pen.

On Tuesday, we went to the Old Executive Office Building, the Headquarters of Vice President Gore. Gore had failed to issue official support for MiCASSA as a presidential candidate, and he and President Clinton, in the waning hours of the Clinton administration had also not supported full funding for the Office of Civil Rights enforcement of Olmstead, nor had they supported funding Olmstead implementation grants to the states.

For those looking for historical lessons to inform the future, especially during this election year, they would do well to remember Stephanie’s words from this D.C. action report in Incitement.

“Eight years of promises were coming to a close with a lot of promises not kept and a lot of dreams broken. Lip service is not attendant services. Glad-handing does not complete a bowel program. It doesn’t get you up and dressed, and it doesn’t get you into bed at the end of the day.”

And so, after gathering in Lafayette Park, we marched across the street and surrounded the building, finding all but one, tiny inaccessible gate closed up tighter than a drum. As usual, the presence of steps could not stop ADAPT’s determined warriors. About three dozen people spilled out of their chairs, and were carried, or dragged themselves down the tiny entry steps, across a huge plaza, and then up the steps of the Old Executive Office Building to block the doors.

The images from that day are seared in my memory…Maria, refusing any assistance, pulling herself by her hands regally across that checkerboard plaza, inch by inch, like a sinuous snake-queen; best friends Julie and Tammy, both with CP, struggling step by step, leaving blood in their tracks, as they dragged themselves to the top of the building’s staircase; Quinn, seated proudly on his portable stool in his white shirt in the hot sun, cane by his side, blocking one of the building’s doors; and then, looking back from the wide steps, and seeing my husband Bob and 500 of our brothers and sisters tightly lining the wrought-iron fence staring back at us, chanting and sending ADAPT energy to everyone inside what must have resembled a prison yard.

Gore’s staff finally located him on the campaign trail, and Nancy Ann Min DeParle, head of all HCFA (now CMS), personally assured that the Vice president would keep his word to meet with us. Victory came none too soon, as the day had taken its toll on Lou’s heart, and he was taken by ambulance to the hospital to recover, and others repaired to their rooms to clean and dress the wounds they sustained from crawling, dragging and climbing on cement because the building entrance was not accessible.

On Wednesday, we again hit two targets. First, supposedly on our way to the Hill to visit our congressional delegations, we took everyone by surprise as we descended on D.C. City Hall to confront D.C. Mayor, Anthony Williams. He was leading a city that has more institutionalization than almost anywhere in the country, right there in the backyard of Congress and the President.

Since they didn’t expect us, our negotiating team easily entered the building and the rest of us spread out across the front of City Hall. Mayor Williams was contacted at a meeting in Baltimore, and agreed to meet with ADAPT at 2 p.m. that day. 100 ADAPT activists remained at City Hall to be sure the Mayor kept his word, and the rest of us made our scheduled visits with our U.S. Senators and Representatives.

Mayor Williams kept his word and met with us at 2 p.m. Two hours later our negotiating team emerged from City Hall with the Mayor’s commitment to ongoing meetings with the Capitol Area ADAPT group, and his promise to apply for more federal dollars for community services to address the barriers to community that continue to keep so many people institutionalized in our nations’ capitol…especially the disgraceful lack of affordable, accessible housing.

That night, as always, we celebrated together before leaving the next day for our homes across the country, and even “across the pond.”

It’s funny, even though so much of what we do seems to take so long, so many years (Bob Kafka says it’s akin to trying to turn the Andrea Doria), every time we go to Washington, D.C. the insiders there tell us that NOTHING happens until ADAPT comes to town and forces some action.

[youtube https://www.youtube.com/watch?v=dcKrbMfp3eY&w=720&h=405]

THE ROLLING FREEDOM EXPRESS FROM ALABAMA TO WASHINGTON, D.C.

The Rolling Freedom Express (RFE) was an eight day, ten city bus caravan to raise awareness about the latest attacks on the Americans with Disabilities Act that the CO delegation was very proud to be a part of. We had fund-raised, saved, planned and anxiously waited for Sept 20th, the day to leave. It was finally here! The press were taking pictures and interviewing as all of the local ADAPT members cheered while the eight of us were jamming into the big gold van with the magnetic sign saying “Don’t Tread on the ADA”. There was Rick James, Rick Viator, Scott Hinton, Frank Krall, Gil Casarez, Tisha, Malachi, and myself. The trailer was hitched up behind us filled with what we would need for the next two weeks.

It took us three days to get to Birmingham, AL.

The folks from Birmingham welcomed us and even got Gil’s chair fixed that broke along the way. We were joined with ADAPT members from Texas, Kansas, and Georgia. The next day at noon the Rolling Freedom Express was launched! We set up the tables, sold the t-shirts, and raised the banner which were all packed in the trailer. The setting was perfect. It was Ingram Park which is this awesome civil rights park with statues portraying the tactics the cops used against the protesters marching with Dr. King (IE. the dogs, the fire hoses, the clubs, and jailing the children).

Patricia Garrett and Milton Ash, the two people with disabilities in the Garrett case, spoke about how glad they were to know that they were not alone in their fight. The Mayor of Birmingham came out wearing an RFE shirt promising his support for the ADA. Then he boarded the bus (which was wrapped in its Rolling Freedom Express message of support for the ADA) and rode it out of town with the procession on its way to Atlanta.

We arrived in Atlanta, GA that night ready for Day 2 of the Rolling Freedom Express. The event was held at the King Center with over 100 people from Atlanta attending. Kate Gainer from ADAPT began the ceremony. At the end a bell for freedom was rung in symbolic connection with the mental health bell that was created from the iron shackles that patients at psychiatric institutions were chained not so long ago. Afterwards we caravanned to the capitol and then on to Nashville.

The third day of our campaign was held at the Tennessee Capitol’s Bicentennial Mall where people from across the state gathered. Deborah Cunningham, Tony Perrone, Barbara Bounds, Carol Westlake, and Tim Wheat gave rousing speeches as the constant rain gave us a little break. We packed up and drove on to Louisville.

Even though the rain followed us all the way to the Federal Building in Louisville, it stopped long enough for the event. There were still around a hundred people and media that showed up. Representatives from the Kentucky Governor and the Louisville Mayor brought proclamations supporting the ADA. After the event local supporters joined the RFE caravan as we headed north to Columbus. By this point the hotel rooms looked the same. This night Scott went to a strangers room thinking that it was ours. They had their door cracked open. It was an older couple and the guy was sitting on the toilet. I’m not sure who it scared worse Scott or him!

The capitol of Ohio was the location for the fifth RFE rally where 200 local supporters gathered. Roland Sykes gave a powerful speech saying:

“The passage of the ADA was a struggle. Protecting it will be a WAR. A war with many fronts. A war we must not lose! The Garrett case is a wakeup-call that says the ADA is under attack and could be weakened or lost. We must be united.”

With that Roland joined the caravan and we moved on to Pennsylvania.

Bustling Market Square in downtown Pittsburgh was the location of the RFE rally for Day 6 where the mayor and city councilman proclaimed their support. Each city had been very hospitable, but I remember in Harrisburg they served us a home cooked Pennsylvania Dutch dinner. We stayed at the Hilton where six of us shared a room. It was there that Roland taught me how to back the trailer out of the parking lot.

The fountain side of the capitol in Harrisburg, Pennsylvania hosted our 7th rally. We ended it by marching across the Harrisburg Bridge. Day 8 found us at the Liberty Bell in Philadelphia. The City of Brotherly Love was certainly portrayed by our ADAPT family. But, I will tell you that I have never been flipped off so many times as I was following the bus in our van with our trailer through the streets of Philadelphia!

Our last day on the road was at Fort McHenry in Baltimore Maryland. We packed up for the last time after nine cities in six states over eight days. The Rolling Freedom Express rolled into Washington D.C. to meet others joining the caravan at the stadium. We had anxiously awaited this moment. Now there were at least 25 vehicles following the bus!

Bobby Coward was on his phone seeing if the police were going to give us an escort. When he didn’t get an answer, he just said he would do it himself. He led us through the congested streets of Washington which our very patient bus driver manipulated. By this time the bus driver knew us all and even wore our t-shirt! Tisha and Greg jumped out of the bus to block the streets so the caravan could stay together. We arrived at the Supreme Court and a waiting crowd of cheering supporters. This was the day that we were waiting for and it was truly exciting.

The next day was the beginning of our fall action of 2000.

The week before the president had announced a billion dollar give away to the nursing home industry. We were now 400 strong taking it to the streets to confront President Clinton. I remember at one point the cops pulled two of their cars and a bus diagonally across the intersection in an attempt to block our march. That would not stop us. We stood in front of them. Our well trained troops kept on going to Pennsylvania Ave. and the White House. At our destination we chained ourselves to the fence.

We could see through the fence that there was a media event planned. But, I guess, they did not want to hold it with 400 angry disabled people chained to the fence in the background! So the national media decided to come over and see what we were doing! Finally after hours of waiting a delegation was invited inside to meet with the chief of staff to schedule a meeting with ADAPT and President Clinton before the end of October. I would say that was a successful first day!

The second day began with a big rally for the Garrett case with thousands of people attending. Speakers included Jesse Jackson, Ted Kennedy Jr., Martin Luther King III, Justin Dart, and some of us. The Mental Health Association brought their eight ton bell made from shackles. Gallaudet University turned out in force.

After the rally everyone marched to the Supreme Court for a closing ceremony. Again the cops got stupid and would not let the interpreters stand on the steps so they could be visible above the crowd. The interpreters were being threatened with arrests. We (ADAPT) had plans to move on, but we were willing to change them and be arrested if that is how they wanted to play the game! Suddenly a solution was found, the ceremony was over, and we moved on to our plan.

The Republican National Headquarters (RNC) was a couple of blocks down the street.

Our goal was to ask the RNC to get us a meeting with Bush, who was running for President. That night was the second Presidential debate. I guess they had planned a big fund-raising party where people were to pay $1,000 to come and watch the debate. We shut down the headquarters, the Republican Social Club, and the parking garage. No one was moving until we got a commitment. A few people climbed in and out of the windows. But the party goers began to trickle away.

About 9:30 that night the strangest thing happened. A whole bunch of cop cars came screeching up the street with their sirens on. Then a bunch of Metro buses pulled up in front of the club. They pulled some people from the doors, the cops brought everyone from inside out to the buses, and they all left including all of the cops. The message was clear. Bush would rather lose a half million dollars than meet with the disability community!

For our last day in D. C. we chose to confront the American Association of Retired Persons (AARP) who had remained very silent about MiCASSA. We marched over to their huge offices. Half of us went to one of their buildings and the other half went to the other one. We filled both of the building’s lobbies. We all began to chant about meeting with their CEO Horace Deets.

Within an hour our negotiation team was meeting with their people to get an agreement on the actual meeting. Within another hour ADAPT had another victory with a meeting date for November 9th. Every trip is always a new experience. This one was truly jam packed and one that I would not have wanted to miss.

[youtube https://www.youtube.com/watch?v=LTfvY1BcpRY&w=720&h=405]

My very first ADAPT action was in Washington, D.C. in the spring of 2001. I worked in the “home of ADAPT” Atlantis Community, Inc in Denver, Co. but had never been to an ADAPT meeting and had never been on an action. The tradition at that time was Atlantis brought attendants and a nurse to the actions. I was the nurse that trip.

Atlantis/ADAPT traveled by van in those days. We loaded up early Thursday morning, two vans, eight people in wheelchairs, attendants, kids and drivers. Full vans, loaded tight, we were all in great moods as we drove out of town that morning. I was assured that the trip back was always a little different – moods not quite so happy. We drove long distances each day with few stops. We ate breakfast buffet in the mornings and were on the road before nine every morning; lunch was McDonalds or anything else we could find on the road that was quick and we could bring on the van as we continued down the road; dinner we all packed into a restaurant and watched the faces of the staff as they watched one after another wheelchair roll up to the table.

The hotel in D.C. was another revelation. I had worked around and with people in wheelchairs for a couple of years, but I had never seen that many congregated in one place. The halls were full of people in chairs passing one another, blocking one another, filling elevators, restaurants and rooms. The first morning of actions I lined up with everyone else as directed, we were told that we would be moving out “soon” but I couldn’t figure out how it would happen. And then we started to move one after another of us moving forward and I kept looking back to see the entire line of activists moving and chanting, “Our Homes not Nursing Homes”, and with one purpose. I blocked intersections with the others to keep cars from moving into our line, I stood over holes in the street to keep a chair from getting stuck and when someone ignored the cautions I helped push the chair out of the hole.

We arrived… Health and Human Services. We lined up in front, no chanting, just waiting, and then the word came around, move in toward the building, and the chanting began: “Can you hear us on the inside?” And then word came down… cover the doors. After a very short time a group of our people came out of the doors and a mighty cheer came up from the crowd. And before I had any idea of what was going on we were on our way.

The long lines moving through the streets again, the continued chanting, blocking intersections and blocking holes in the street, but things changed a little bit with the arrival of a police escort. Now there were police cars at every intersection, diverting traffic, but every intersection was also blocked by ADAPT nobody was taking any chances.

The long march led us to AHCA, the American Health Care Association, looking for another meeting with their director. There was a confrontation at the door as a group tried to move inside. All the lights were off and the doors were locked, but ADAPT just kept knocking and pretty soon the group was led inside. Lunch arrived, McDonald hamburgers passed out to the crowd surrounding the building and we ate while we chanted and covered the building waiting for an answer. The ADAPTers on the inside appeared with a written commitment for a meeting and we were on the long march home to recoup for another day.

The following day there we were on the sidewalk again early in the morning awaiting word to move out and move we did with police in tow all the way to the White House. ADAPT moved across the sidewalk in front, lined up in front of the fence and settled in for a long wait. Again there were police, Federal agents behind the fence with their briefcases, in case one of those wheelchairs launched over the top, but for the most part they left us alone in the sun enjoying the day and waiting for the group on the inside. And appear they did, leading a White House staffer with promises to ADAPT to issue the Olmstead Executive Order within thirty days.

The next day we were at HUD looking for housing vouchers and things got a little more exciting. Suddenly the crowd surged forward breaking through barriers towards the doors, in the door to be faced with security’s tables upright in the inside door space. The chanting was continuous, and there was continuous pressure against those blockades trying to reach the lobby.

Then, just as suddenly as it started it was over. There was another group of ADAPTers with civilians in tow with new announcements of meetings and we were on our way home. The most obvious thing about each day was the work, hours of work, that had gone before to make these people know ADAPT would not be “handled” but would be taken seriously.

I arrived in the city by the bay and was quickly overwhelmed by the bustling of activity that seemed to be happening on every street my eyes could behold. I’d barely been unpacked when I set out to begin one of those many, many tasks that must be done when 500 of your friends are coming to town. I set out from the hotel and headed up to the closest McDonald’s, ADAPT’s staple food, to arrange for some lunches.

As I left the curb, I noticed a small neon box counting backwards from 10, and I remember wondering what its purpose might be. I quickly forgot about the box when I encountered cable rail lines that caused me to need to stop each time and lift the front of my wheelchair so it would not get caught in the rail. When I got about 8 feet from the opposite corner, it had started to occur to me why the box was counting down, looked up, and it had turned 0. I quickly looked to my right, just before I felt the car hit me, and the wheelchair catapulted into the air, spinning 360 degrees several times, and then landing on my two wheels, like a cat.

Needless to say, I was okay but my wheels didn’t make it. In fact, I believe they took the brunt of the impact and probably saved my life. They would not however, spin anymore and thanks to cell phones, I was able to reach my friends at the hotel who promptly came and picked me up. ADAPT however, is an endless network of opportunities and within a few hours, we had arranged for one of our folks still to arrive to bring a spare wheel and get me back on the road.

Two days later, the troops started to arrive. I ended up going out to the airport to help usher folks in and welcome them to California. It was a pretty easygoing assignment until one of my favorite Kansas soldiers rolled up to me and asked where did I want to put his folks for pick-up? I checked my list, and checked it twice. Oh, had he forgotten to call and let us know about the 15 people he would be bringing from Kansas? The more the merrier, and we’re ADAPT, and so we adapted.

The next morning, Sunday, came early and as part of the leadership team I needed to be downstairs early. I knew the calm and serenity of the hotel was about to end because not only were our guys going to be coming downstairs soon, we would also be joined by local folks. Before I knew it, the onslaught began. Amidst all the seemingly chaotic activities that morning, the troops were packed up, lined up and waiting to head out for the day. Little did I know that this was to be my own personal day of inner reflection.

Much like a symphony, we moved 500 people over, under and through the city as we made our way to face the monster we had all crossed the country to confront. The people of San Francisco had agreed to a bond that would cost the city, to spend $600 million over the next 10 years to re-build what we called the “Lagunahondasaurus,” a resort sitting on top of a hill, surrounded by quaint shops, luncheonettes and life.

The couple hundred of local Californians who too were outraged joined us for the day that began with song, testimony and commitment to never give up the fight to stop the atrocity. And then, this is where my own self-measurement process for the day, began. I did not know that Stephanie Thomas, in her manual chair, would be leading our march up the gigantic hill, and really didn’t know that I would be right behind her, in my manual. It’s probably good I did not know until that moment because I would have been overwhelmed with self-doubt because I know I was barely able to go 50 feet up that hill and keep the front of my chair down just a few days earlier when leadership had made the earlier trip.

As a soldier, you don’t question, so I figured the rest of the leadership must have faith that we could do it and so we lined up and began our assent. As we started to push, I began to think of the people locked away on top of that hill who had never been asked if they wanted a new “Laguna Honda,” or for that matter, where they wanted to live. I began to think of the 1,000 people inside who we never really got to see because most of the grounds, the beautiful statues and gardens were only accessible by stairs. I thought about the man I had met near the hotel who was using a cane but had no trouble keeping up with me. He told me what it was like to live there and how he had been treated. He got out, but mostly because of his own willpower. He said life in the community was tough at times, but he’d been through hell, so this was a “piece of cake”.

I don’t know if it became harder to keep the front of the wheelchair down or to continue pushing even though every muscle in your body screamed out for relief, but I know what started happening next probably made it possible for me to make it up that hill. Walking along side of us was the Laguna Honda Administrator. He began talking to Stephanie and me, trying to justify his shameless salary, trying to justify the lies told to the people of the city and lack of telling them that the bond money could have been used to create thousands of community alternatives and then he probably did the best thing he could do to aid our efforts. As the hill became steeper and harder, he began making motions towards us asking if he could “help us.” We both gave him such a look that he didn’t come within 3 feet of our chairs and it was just the little “push” we needed. And then, we were at the top and I personally knew I would never be the same.

After leaving wooden crosses at the feet of the inaccessible Florence Nightingale statue, the 500 troops made their way over, under and through the city back to the hotel for a nights rest. As I sat on the subway platform, reveling in my own newly found inner-fortitude, it happened.

First I heard the crash and then the screams. I raced to the opposite side of the platform and there down on the tracks was one of our own. He’d gotten too close to the edge of the platform and had gone down. Not usually one to panic, I quickly asked several young men to go down and ask him if he needed any immediate medical help. Once we assessed he was banged up but not much more, we began to discuss the best way to get him out of there.

Some of us heard it before we saw it, but there was no mistaking the single beam of light snaking its way toward us in the tunnel. Everyone began screaming, including the rail employees, as the 6 young men jumped back up to the platform. Suddenly, above all the screaming, I heard one rail employee’s voice, screeching: “But it’s automatic! It’s automatic!”

I wheeled over to her and when I was unable to get an answer, I grabbed her shoulders, made her look at my face and asked the question. Through her tear-stained face I got the answer I was dreading, so I turned to a somewhat more composed rail employee and asked: “If no one is driving the train, is there some way to stop it?” He responded that there was actually an emergency employee on the train and emergency brakes and they were trying to reach him, but reception was bad.

And now you could see the train coming. I have never felt so helpless as I did at that moment. Then I remembered how our soldier must be feeling. So I went to the edge of the platform and talked to him. I asked him where he was planning to go to dinner that night and we spoke like two people standing on the corner just shooting the breeze with the clear intent and certainty that he was going to go to dinner that night. My peripheral vision now saw the train, rolling forward but we kept “chatting,” and then, just 75 feet from his head, the train stopped.

He went to the hospital to be checked out, his chariot went to the repair shop and the rest of us went back to the hotel. It was the end of day one.

The following morning, our target was a mere 400 or so feet away, so some of our perfectly lined up and raring to go troops reached the target before the back of the line even stepped foot off the curb. Within the hour we had successfully shut down all four corners around the majestic city hall building, yet we did not get a meeting with the City’s Mayor: One battle; not the war.

Just like clockwork, the soldiers lined up again the following morning. Once again we made the short jaunt just 500 feet from the hotel and once again, within the hour we had tied up all traffic around the State Office Building. Despite the leadership team’s negotiations for a meeting with Governor Gray, we were once again told “NO.” But no is not a word ADAPT really believes. I happened to be on one of those corners that was not very visible but we held strong. As it became later in the day, construction type employees were finished “quenching their thirsts” and came out to find out they were now blocked in, and that’s when things got ugly.

Several specimens, quite intoxicated, pulled their trucks that had been trapped between corners, up to our wheelchairs, pushed us while revving their engine, much like the primal beast thumping his chest to display his “might,” except for the fact that he was a drunk in a truck. When several of these chest-thumping “bystanders” decided to rid themselves of their empty bottles they chose those of us lined up in the street for target practice. One or two of them still had some good aim and for one of the first times in a leadership position, I found myself on my walkie-talkie begging my colleagues to send some of those California patrolmen back to protect our people.

As our brothers and sisters began being pulled from their chairs, drug down the street and just knocked over, some began jumping out of their chairs and climbing up the steps. It didn’t take long for a response and soon, over 100 people were arrested that day. I was number 78!

As I said before, “no” is a word ADAPT does not understand, and since the Mayor and Governor were chirping it in unison, we took our last shot and marched over to the United Nations Plaza, blockading it until a meeting was arranged with Josh Valdez, the US Health and Human Secretary’s Regional Representative for Region IX and the Region IX Deputy Director for the Centers for Medicare and Medicaid services to discuss the Civil Rights complaints we’d filed against the rebuilding of Laguna Honda. The battle rages on.

[youtube https://www.youtube.com/watch?v=_Qoz2twroN8&w=720&h=405]

I was one of the thoroughly drenched activists blocking the street in front of the Office of Management Budget who didn’t realize how big our success was at that action. Five years later, when everyone was saying the things ADAPT was yelling in the street that day it was clear how essential our voices are.

It seems in retrospect to be a coincidence, or some mystical ADAPT mojo when we end up at the right place at the right time. The truth is that ADAPT is an action group and makes the opportunities, but on May 13, 2002 when Mitchell Daniels had refused to meet with ADAPT and it began to rain, it was beginning to look like an awful mess.

We had blocked the front door to the large office building, which was hassle for some, but most of the people inside saw our takeover as a passing inconvenience. ADAPT had also blocked the two main intersections outside the OMB which was a major irritation to motorists, and to the Capitol Police who were redirecting traffic and preparing to arrest hundreds of us.

The police held off making arrests. The afternoon rain shower obviously caused the authorities to feel that the rain would help cool things off. The rain shower, however, had the opposite effect. ADAPT activists all pulled out an assortment of brightly colored rain ponchos and were reinvigorated by the spring drizzle.

The intersections were wrapped in yellow caution-tape similar to what police use to designate a “crime scene.” The ADAPT yellow tape however said “community first” and had the ADAPT logo. At the four corners of each intersection, activists stretched the tape around the sign poles. Then, they made a May Pole effect by bringing the tape to the center of the intersection. The police didn’t seem to like our appropriating their yellow symbol; they pulled much of it down from the intersection, but many ADAPT activists were partially wrapped in tape into the wet afternoon.

The festive atmosphere outside resulted in the pressure rising inside the OMB. The staff inside who were mildly curious hours ago, were now intently curious if they would be able to get out to go home. Mitchell Daniels sent an assistant out to negotiate with ADAPT.

By that strange ADAPT twist of fate it was Mark McClellan who came out to parley with ADAPT in the rain. We had no way of knowing at the time at Mark McClellan would become the Administrator for the Centers for Medicare and Medicaid Services, the central federal agency developing long-term Medicaid Policy. And it is no surprise that the exact words ADAPT was yelling in the street, would become the language of law in the “Money Follows the Person” Legislation.

In the street that day, I also remember seeing Joe Shapiro the author of “No Pity: People with Disabilities Forging a New Civil Rights Movement.” He was walking around with a microphone interviewing activists, police and bureaucrats. I didn’t get a chance to talk to him that day, but I recall wondering just what his angle was; I wondered what perspective he would give to the demonstration.

About four years later I would learn what Joe Shapiro’s slant was on the ADAPT protest. After “Money Follows the Person” became law in February of 2006, Reporting for National Public Radio, Joe Shapiro told the story of how the legislation came about and is currently helping to get literally thousands of people out of institutions. You can still listen to his piece on NPR.org and hear some of the voices and chants he recorded.

“McClellan recently announced his resignation,” Joseph Shapiro reports in his NPR article: Disabled Activists Win Battle for Independent Care. “Though he’ll be most remembered for setting up the new Medicare drug benefit, he says one of his proudest accomplishments was his work with ADAPT.”

I love being a part of that accomplishment. ADAPT also visited the White House, Congress and we attempted to get support from Unions that week in May. Some people might think that the route to get “Money Follows the Person” sounds more like “luck” than achievement. Well I can’t deny that ADAPT has some bizarre indescribable luck, but the critical factor that made the difference that day, and the following years getting the legislation passed was that ADAPT took action. Without direct action, “Money Follows the Person” might still be just an idea lost in the noise of Medicaid policy.

[youtube https://www.youtube.com/watch?v=uzXakljMnQE&w=720&h=405]

THE VIRTUAL ACTION NEW ORLEANS OCT. 2002

The hotel was booked. It was the Radisson Hotel behind the Super Dome. It was a funky old hotel on Canal St. The elevators had a mind of their own and would take you where they wanted to go! The airline tickets were bought. The t-shirts, the banner, the Mardi Gras beads, and the doubloons (wooden nickels) and the umbrellas for a New Orleans style funeral march were all bought and ready to go. The trailer was packed.

It was the week before and Bob and Stephanie were in New Orleans. They had scoped out the possible targets. They were Senator’s offices, the Federal Building, and the Convention Center where the American Health Care Association was holding their convention was four to six blocks away. That was the huge center that we saw on the news for the people from Katrina. Bob and Steph were concerned about how close we would be to the French Quarter. The Protection and Advocacy and AARP were ready to help us. They had already begun filing an Olmstead suit.

The press was primed. The first article was in the newspaper. ADAPT to Confront Health Care Lobby in New Orleans, “Our Homes Not Nursing Homes” –

What do you do if you are the “little guy,” a disabled or older American, getting trampled by corporate greed and possible fiscal mismanagement? If your name is ADAPT, you fight back!

ADAPT, the national grassroots, disability rights group, will be in New Orleans, October 5 – 10, to confront the American Health Care Association (AHCA) the nursing home lobby, on its continued opposition to “Community First” for Americans with disabilities, young and old.

“Community First” is the rallying cry of 50 million Americans, old and young, who don’t want to be forced into nursing homes and other institutions when they could receive the same long term care services and supports in their own homes, in their own communities …

“Once again, AHCA is asking Congress to throw money at a problem that begs a far different solution. Did the nursing home industry make a bunch of bad investments with our tax dollars?” Asks Stephanie Thomas, a National Organizer for ADAPT. “Did owners pocket too much as profit? Are they now asking Congress for a corporate bailout? We’d sure like to know why Congress would even think about rewarding possible nursing home industry mismanagement by throwing good money after bad. This is corporate welfare at work.”

While in New Orleans, in addition to holding AHCA accountable for its opposition to “Community First”, ADAPT will be promoting MiCASSA, bi-partisan legislation now in Congress (S.1298 and HR3612), which reforms federal Medicaid policy to allow all Americans in need of long term care services to choose to receive those services in their own homes. ADAPT will challenge AHCA to support MiCASSA and give people with disabilities, older Americans and families a real choice in long term services and supports.

There had already been one hurricane that had come. Now the weather forecast was predicting a worse one for New Orleans. The hotel elevator cables are in the basement. If it flooded the elevators would be the first to go. In fact that could be why they had a mind of their own already! The heads of the hotel met with Bob and Steph. They said that their own families were leaving town. They did not think it was safe for ADAPT to come. They assured Bob and Steph that none of us would lose any money. We had a national emergency conference call. It was decided to cancel the action for the first time in our history.

Bob and Steph packed up immediately and began to drive out of town. All of the roads coming into town were closed. Everyone was being routed out. All of the exits were closed. It was just a good thing that they had enough gas. They drove about 100 miles with seeing nothing but fields of water, but finally made it back to Austin safe and sound.

[youtube https://www.youtube.com/watch?v=e1zNeoR3I2M&w=720&h=405]

When I got to Washington DC I was not sure what was going to happen. Just a year before my first ADAPT action in May of 2003; I was living in a nursing home in Boulder Colorado. For the seven years before that I was a Medicaid Skilled Nursing Facility bed.

I spoke out and I spoke up in the nursing home, but it was very different than what I was experiencing with ADAPT. I questioned authority in the nursing home, for myself and for others. What I often heard in response was that the decisions they made were the best for patients and for me. They said they cared about me.

I was not content, but after several years I just didn’t know what else there was for me. I got perks because of my dissent; I often got what I wanted because the Nursing Home staff did not want to hear me complain. I look back and see that giving-in and giving me perks sometimes was their way of manipulating me, the nursing home wanted to shut me up.

One of the perks I got was to have a computer. Ultimately, it was the information on the Internet that got me out of the nursing home. I mean, there is no lock on the front door but I didn’t know I could leave. The attitude that all the nursing home staff related to everyone, regardless of age, was that “you can’t live on your own.” After a while, you just accept that as fact. They say they care about you; and you accept that as fact too.

I was not sure what was going to happen when I got to the capitol for my first ADAPT Action. I was nervous. I mostly did not want to screw-up, so I went to bed early that night.

I use a wheelchair. When I went to the first ADAPT big meeting there were literally hundreds of other wheelchair users in the same room and hundreds of other people with a variety of disabilities. I talked and mingled. I met some people, some new to ADAPT, some old-timers. I got fired-up by MiCASSA and ADAPT’s dedication to get the bill passed. I knew from experience that the campaign for MiCASSA was essential.

No one said they cared about me. As a matter of fact, people didn’t seem to care about me. They didn’t ask if I was hot or cold, if I had enough to eat or got enough sleep. ADAPT gave me way too much information, but they didn’t tell me where we were going. They assigned me to one of several color groups, so I got into line and followed the person in front of me. The color leaders reminded me to keep it tight (stay close to the person in front), stay to the right and single file.

You might think that in that mass of people I would feel unimportant and overlooked. On the contrary, finally I was with people that did care about me. They didn’t say it, like the staff at the nursing home, but it was more evident and real than ever. ADAPT cared about what I cared about. The people around me knew what I knew about life in an institution and they were speaking out.

ADAPT was marching to the White House that day to demand “NO MORE STOLEN LIVES.” They were speaking up for over a million Americans in institutions and nursing homes. They were speaking out for people, like they had spoken out for me before I had even heard of ADAPT.

We were demanding “No more Stolen Lives!” I was determined to speak up until all of us have real choices.

A hundred activists got arrested at the White House that day. The next day I broke the law blocking Constitution Avenue for seven hours in front of the Department of Justice. We made a powerful statement demanding that USDOJ respect and enforce our rights.

On Tuesday we made our point to the American Nursing Association, asking them to support MiCASSA. The final day I visited Congress to get support from lawmakers.

I was hooked on ADAPT.