Category: I Was There

The May 1993 Wheels of Freedom Action is notable for the memorial program for ADAPT co-founder Wade Blank and his young son Lincoln, who had drowned the previous February; the meeting with Donna Shalala, Secretary of Health and Human Services under President Bill Clinton; and the ongoing actions and arrests for “our homes, not nursing homes.”

Memorial Program for Wade Blank

ADAPT gathered in front of the capitol to remember Wade. Before being tapped by a nursing home administrator to recruit residents for a new youth wing, Wade had been a minister, a War on Poverty organizer, and a student of the work of Martin Luther King, Jr. At the nursing home he soon realized the young people were living under extreme oppression, and his efforts to reform the system from within were fruitless. He began moving the young people back out into the community, so the nursing home fired him. But his commitment to disability rights became lifelong, and he founded the Atlantis Community and then ADAPT.

Among those speaking in his memory were Bob Kafka, Colorado Representative Pat Schroeder (who years before had brought coffee to the first ADAPT demonstrators blocking buses in Denver), Justin Dart, Laura Hershey, Evan Kemp, Stephanie Thomas and Mike Auberger. Messengers spoke from the offices of Congressmen Major Owen, Tom Harkin and President Clinton. Elaine Kolb and Johnnie Crescendo sang. The program ended with a march to the White House where ADAPT reached through the fence to plant crosses with the names of people who had died in nursing homes. For every formal tribute to Wade and his family, there were many personal ones throughout the week. I remember Carolyn laughing and crying at the same time while telling me a sweet, funny memory from her personal friendship with Lincoln.

Meeting with Secretary Donna Shalala

ADAPT leadership met with Shalala and secured promises to advance attendant services in the new national health plan being crafted by President Clinton, with much involvement from Hillary. Shalala then appeared before all of ADAPT, promising to rebalance power away from nursing homes toward support at home. She spoke of the President’s intention to unveil a health care plan for all Americans that would be available wherever and whether they worked and would not be denied for pre-existing conditions.

“Powerful interests don’t want us to do that,” she stated. Shalala also took many questions from the floor. I remember my pride in my usually quiet friend, Nancy Moulton (now deceased), as she spoke up publicly to sharply criticize the administration’s failure to confront Oregon’s system of rationing health care. Listening to many personal stories, Shalala pledged support and asked ADAPT’s help in lobbying our Congress people to support the national health plan (From the perspective of 2008, we know that Congress, the mega-industries, and their lobbyists completely defeated the health plan).

Actions and New Coverage

ADAPT demonstrated at the White House, at the nursing home lobby headquarters, and filled the halls of the Capitol, where many were arrested. The media coverage was excellent, including TV reports that correctly stated ADAPT’s intent to rebalance the federal funds so that 25% of the Medicaid money would go to home assistance instead of institutions. Beyond local stations, CNN and World News tonight covered the actions. Marca Bristo, Mike Auberger, Karen Tamley, Justin Dart, Laura Hershey, Mark Beckworth, and John Gladstone were among those giving eloquent statements to the media.

But far from the media lights, at another action, in another year, I remember John Gladstone in jail, at 4 a.m. in front of a judge. All of us arrested, questioned one by one by the judge, routinely answered, “yes” when asked if we would now stay away from the hotel where we had been arrested. All except John, who told the judge, “No. I cannot make that promise. I once lived in a nursing home, and I will go anywhere, any, time to keep other people out.”

In fact, we spent our honeymoon not too far from Opryland in separate-but-equal cells in the Nashville prison with 100 of our ADAPT brothers and sisters.

We honeymooned in Nashville because the American Health Care Association (AHCA), the nursing home lobby, was holding its annual conference at Opryland, and ADAPT was hot on AHCA’s trail.

We were married on September 10, 1993 in Michigan, asking our friends and families to forego presents and instead donate money to our ADAPT Nashville honeymoon fund. Little did we know what an exciting and exhilarating honeymoon it would be!

On Day One of the action, 300 of us marched down Music Valley Drive to the Opryland Hotel, crossing over a busy four-lane highway to reach the entrance. We were met by hotel security that informed us they had graciously cordoned off an “official protest area” in the north 40 of their huge parking lot, and if we chose not to use that area and come onto Opryland property, we would be arrested.

Underscoring that threat were the sounds of the police helicopter continuously circling overhead like something out of the “MASH” TV series. It turned out that the Nashville police had spent thousands of dollars researching how to deal with ADAPT, and how to arrest us “sensitively.” Their advanced “surveillance tactics” included observing us by air, hoping they could get a heads up on our next move and thwart it, and assigning several plain clothes cops to mingle with us to gather intelligence.

We decided against immediately entering the Opryland grounds and facing arrest before we had a chance to deliver our message to create a national personal assistance program that would Free Our People! from being warehoused in nursing homes where corporate owners (AHCA) profited greatly by keeping them there. The security personnel and police thought their threats and air surveillance had intimidated us into retreat.

As usual, law enforcement had greatly underestimated the power and ingenuity of ADAPT!

We quickly regrouped, filled all four crosswalks, and began to cross all the streets at the Opryland Hotel entrance, effectively cutting off all traffic in every direction, including traffic trying to exit the four-lane highway. We weren’t breaking any laws, so we couldn’t be arrested. Moreover, we had created a real traffic problem for the police, so they now “had a dog in our fight” and so they pushed AHCA to come out and negotiate with us! Within two hours AHCA agreed to a meeting two days later, thinking that they had now bought Nashville two days of respite from our activism.

How wrong they were! On Day Two we decided to pay a visit to the Tennessee Capitol to confront the Governor. The Governor and legislature had persistently chosen to ignore the civil rights and personal assistance needs of Tennessee citizens with disabilities, forcing many Tennesseans to leave the state and move elsewhere so they could live in the community with personal assistance instead of lying unattended for hours in their own waste in a nursing home.

Using the two tiny elevators accessed from the Capitol basement, we ferried people up to the Governor’s office, which we found blocked by state security personnel. Again regrouping, we kept ferrying people up the elevators until we filled the halls outside the Governor’s office, trapping the Governor’s staff and security, and creating our own version of a nursing home where no one got in or out without our permission. Our chants of “The People United Will Never Be Defeated” in both English and Spanish echoed through the Capitol.

We demanded that the staff call the Governor, who was in Germany, and arrange a meeting. When staff informed us that the Governor was in the midst of dinner and couldn’t talk, we decided we might as well eat, too, and promptly ordered pizza for 300. As we enjoyed lunch, Capitol staff members were climbing in and out of windows to come and go, and the police had blocked off the streets around the Capitol, again creating enough of a problem that the Governor finally committed to a meeting when he got back to the states. We quickly held a press conference announcing that the Governor had agreed to a meeting and marched back to our hotel in time for a late dinner and a celebration of two days of action with our demands met.

Day Three began with AHCA making excuse after excuse about the meeting they had agreed to on Day One. Not accepting these lame excuses, ADAPT went to the agreed upon meeting place, a Ramada Inn across from the Opryland Hotel, only to find out that AHCA hadn’t even tried to get a meeting room. They also didn’t tell us that Opryland had offered a 250-person meeting room. It was obvious that they had lied to us and the media, and had no intention of meeting with us.

In true ADAPT fashion, we decided that if they wouldn’t honor their commitment to meet, we’d take the meeting to them. With the police helicopter flying overhead, two lines started to move quickly down the two entry drives, opening the way for a third wave to fly through the flimsy barriers that Opryland security had constructed, thinking that a simple saw horse could keep ADAPT from its objective. They had even parked a school bus so it blocked the entrance lanes to the hotel, leaving the exit lanes open, and not realizing that ADAPT had no qualms about going in the “out lanes!”

Before the hotel security had time to lock the doors to keep us out, a small handful of ADAPT activists led by Bob, got into the meeting room and started chanting and handing out flyers.

While Bob and the others were now locked in, another hundred of us had made it to the front doors, and were eventually arrested by the police and kept in a roped off area until a fleet of yellow school buses arrived to transport us to jail. Since the local jail was not accessible, we were all carted off to the local prison behind a chain-link fence topped with three rows of concertina wire. Once inside, we were separated with Bob put in the male holding room and Marsha put in the female holding room. The prison Social Worker stayed and fed us sandwiches, and allowed us to watch all the coverage of our action on TV.

A magistrate came from town and spent the night processing and booking all of us, and we were served with a restraining order that said we could not go back on Opryland property.

Dawn of Day Four found us marching back to our hotel, where the Opryland lawyer met us with a very unusual offer. Fearing we might protest at the Country Music Awards that night, they offered us a press conference with several country music stars, and never ones to avoid the bizarre….we accepted! At 5 p.m., surrounded by a ton of media, the TV cameras rolled as Bob, and Paulette Patterson, Jennifer McPhail and Mark Johnson articulated ADAPT’s demand for a national attendant services program while flanked by Porter Wagoner, Bill Anderson and William Lee Golden of the Oak Ridge Boys. After our presentation, the country stars spoke in support of freedom and independence for people with disabilities, and wore ADAPT t-shirts when they performed later that night.

We left Tennessee the next morning, exhausted and exhilarated with honeymoon memories we will never forget, and with AHCA on notice that we would see them again in 1994 at their convention in Las Vegas!

The April 1994 ADAPT action in Washington, D.C. began with a march across Memorial Bridge to the Lincoln Memorial. The National Council on Independent Living, Consortium of Citizens with Disabilities and other groups joined ADAPT as we lead 2,500 in the march, which Bob Liston later called “incredible and breathtaking.” Speakers at the rally that followed included Senator Tom Harkin, Chair of the President’s Committee on the Employment of People with Disabilities Tony Coelho, Justin Dart, ADAPT leaders Stephanie Thomas and Mike Auberger, and others. I had the unforgettable privilege of singing “Free Our People” at the Lincoln Memorial.

The Clinton plan for universal health care was on the political table that spring, and ADAPT’s focus and mission was to ensure that the plan would include our civil right to consumer directed personal assistance services and a real choice in long term care. Fifty ADAPT members as well as representatives from other disability groups were invited to the East Room of the White House, where Bill Clinton told us: “Be an agent of change, an agent of empowerment, never forget that you are carrying on your shoulders now not only your own cause, but ours as well. . . . We cannot run away from this, because we cannot afford to have everybody forced into a nursing home or living in abject neglect . . .” He told us to take our message to Congress.

Early Tuesday morning, five hundred ADAPT members began the series of Metro elevator and train rides to Capitol South, to take our message to Congressional leaders. ADAPT’s strategy began with the unprecedented step of simultaneously taking over the party headquarters of the Democratic and Republican National Committees. Our demand was a meeting with the Chairs and Co-Chairs of the key Congressional Committees addressing health care reform.

While we were still arriving at the Metro station, before splitting off toward our as yet unannounced destinations, Bob Kafka was interviewed about our issues. Bob said, “Families and individuals are in crisis…. It’s really a human and civil rights issue.” After more explanation, he said, “If we don’t get support services, the Dr. Kevorkian’s of the world will start killing us.” Kevorkian had already been acquitted two or three times, but this was before the founding of Not Dead Yet, and I was impressed by Bob’s directness.

The DNC action began with blocked doors and meetings with security, but it wasn’t long before the admission of a few led to everyone streaming into the building. When we were told that the Chair was out of town, we said that we would wait. Numerous ADAPTers began crawling up the staircase, and some went up in the elevators, but then everything was closed off to us. We demanded a meeting with Kennedy, Dingell, Rostankowski and Moynihan, but were only offered meetings with staff.

At about 3:30 p.m., Stephanie Thomas and I each took an elevator. By that time, some people were desperate for restroom accommodations, or at least some privacy to use a urinal; so two people went into my elevator while I blocked the doorway.

After four hours occupying all three floors of the DNC, ADAPT negotiated a peaceful departure based on the DNC spokesperson’s acknowledgement that meetings with Congressional staffers would not be sufficient, along with her commitment to try to set up meetings with the specific Democratic leaders on our list.

Before we left the building, Cassie James spoke to the 250 adapters at the DNC. Among other powerful remarks, Cassie made a compelling statement about the “inconvenience” we had caused that day: “The inconvenience of incarceration, this is what we’ve been facing our whole life. We have been told that we are being protected from ourselves, we have been locked in, we have been drugged when we try to get out and see a simple movie or visit a friend. Our lives have been turned around. … This inconvenience is just one day of your life.”

Back at the hotel, we learned that things at the RNC were about the same.

At the Tuesday night meeting at the ADAPT hotel, we all sang “Happy Anniversary” to Bob and Stephanie. What a way to celebrate eight years of marriage!

Wednesday morning started at 8 a.m. as people donned rain ponchos and garbage bags. On this cold and rainy day, we were taking our message to the halls of Congress, specifically the Russell and Rayburn Buildings. Congressman Dingell, Chair of the House Energy and Commerce Committee, offered a meeting to the 250 ADAPTers in the Rayburn contingent.

The Congressman’s initial idea of a “meeting” was that he would speak to us about working to get votes for the President’s universal health care plan. At first, it was difficult to get him to listen to our concerns. He said that “long-term care” was included. Stephanie pushed, saying, that he needed to listen to us, that we would only be there one more day, that attendant services are not “generic long-term care.” Then others spoke up for the ADAPT plan too, like LaTonya Reeves, who said, “People would not have to move all over the United States because in their home town they don’t have attendant services … I would rather move than be locked up, mistreated and my dignity taken away.”

Bob said that we’re always told there’s no money for consumer directed in-home services, but they can always find an entitlement for hospitals, nursing homes and “home health.” Mark Johnson said that the President’s plan does not draw a line in the sand and say, “It’s about people, not profits.” The applause rose up as each member made our case for reversing the institutional bias.

Next, at the Russell Building, 250 ADAPTers met with top aides for Senators Kassebaum (R-KS), Kennedy (D-MA) and Moynihan (D-NY), and secured agreements for follow up meetings back home.

I was in the group that next went to the offices of then House Minority Whip Newt Gingrich. Along with several Georgia ADAPTers, I got into his inner office, where a drawing from the home health industry was on display. At first, Gingrich was reportedly not available at all that day, but we said we would wait. Before long, he “miraculously” appeared.

A Georgia ADAPTer named James spoke about having been in a diving accident and winding up in a nursing home for ten years. He said that “home health” would not come and get him up every morning. He waited years until a slot opened up on the Georgia attendant services program that then served only fifty people, but he had now been living independently for five years. Mark Johnson estimated that 6,000 more people in Georgia needed that program. Bob Kafka explained that our position is about redirecting the funding, the “dollars follow the individual.” What a concept!

Gingrich stated agreement with our goals, and offered to take three steps. He said he would write to Republicans to be active in drafting a bill for attendant services, have a task force write to the Governors to make attendant services “the alternative of choice,” and actively support putting attendant services in whatever health care bill comes up. He strongly recommended that we get a freestanding bill in the meantime, and get co-sponsors so that it would be easier to add our bill to the bigger health care bill when the time came.

Gingrich also acknowledged that if we had not come up to see him that day, “it might not have gotten my attention.” This ultimately led to his introduction of the first MiCASA, testimony to the power of ADAPT’s direct action strategies.

So many years, actions, and friends have passed me since ADAPT showed up for the showdown with the American Health Care Association (AHCA) in Las Vegas in October of 1994. And since it was only my fifth national action since first becoming involved with ADAPT in 1992, I was STILL very green and very much in awe of so many folks coming together with such determination.

Our Texas group arrived at the airport late Sunday afternoon and we must have waited what seemed like two hours in the parking lot (sound familiar?) for our ride to the hotel. But this turned out to be a good thing because, still being fairly new, I got to meet some “old timers” from all over who “had a clue” about what we were about to face. I had grown up in desert country and really was enjoying the beautiful sunset when I remembered why I had brought my FM radio along on the plane. A nationally syndicated disability program was broadcasting in Las Vegas and I was determined to hear it. As rare as ANY disability-related program was at the time, this particular one was especially interesting because, as it turned out, they were talking about US – ADAPT – and our issues! We hadn’t even left the airport parking lot and our message was being spread in interviews and songs! This was very, very cool!

When we reached the hotel, I just knew someone had made a mistake. We were staying at the glitziest hotel I’d ever been in. I seemed to recognize the brightly lit driveway from many movies and tourist films I had seen before. It was overwhelming my senses. You could bet it wouldn’t last, though. Soon enough, ADAPT buckled down to business.

By the next day, many of our folks were hard at work in the faces of AHCA conventioneers. And by Tuesday, all 400 of us were on the march to spread the word in our own press conference. The demand was simple – redirect 25% of Medicaid dollars currently going into nursing homes back into home and community-based attendant service. By now in my life, this was a mantra. Real people told their real-life stories of struggling with nursing homes and uncaring staff. I had personally but only briefly experienced some of the same struggle eight years earlier. It was all too real to me.

Most of the next few days have blurred together into memories of lengthy takeovers of busy intersections, the Las Vegas Convention Center, and AHCA’s hotel. I distinctly recall Reverend Willie leading prayers at the base of a large wooden cross from which a wheelchair was hung – symbolizing the many human sacrifices made to the nursing home industry. And I remember the next day, after the cross was erected again near AHCA’s convention; the police briskly came and STOLE it from us, fearing it might be used as a battering ram to bust into the secured building. They had already witnessed how Anita Cameron and some others were capable of breaking and entering past their supposedly first-class security teams.

I remember a life-size statue memorializing Elvis, huge dancing fountains, a giant shiny black pyramid in the desert, all-u-can-eat steak buffets, the glitz and glitter of Fremont Street, and the rat-mazes of the casinos. But probably the best image was of the look of disbelief on that man’s face as he tried to pass out copies of injunctions – court orders – to 400 proud protesters. We completely ignored his demands that we cease and desist our march up the Convention Center driveway. We refused (and continue to refuse) to stop protesting AHCA’s unjust gambling with the lives of our brothers and sisters just to make another buck.

“Final count – 486 arrests. It was Paradise. FREE OUR PEOPLE!”

Manor Care and Newt Gingrich

It wasn’t the action I jumped into a hot tub naked at 4 in the morning and met my future wife; it was before that.

It wasn’t my first action in San Francisco where Bob refused the democrats cookies; it was after that.

It was right after the DAN (The UK version of ADAPT) action in Cardiff, Wales which is featured in the BBC documentary Desperate DAN. I’d just released a new album Pride and it was selling like hot cakes.

I’d first come to ADAPT to observe how you yanks do things. This was my third action and now I was coming because of the friends I made.

I remember the hotel being a train ride to the capital and the swimming pool was always closed. Maybe they thought we would drown and closed the pool to look after us. How kind of them!

I remember hounding the then speaker of the house Newt Gingrich. I have to confess that as an English guy the thought of someone being called Newt rising to the top in politics was extraordinary, or maybe just American. In proper English a newt is a slimy insignificant toad like reptile that dwells with pond life, so maybe it was a good description.

Anyway, one of my memories from that action was when we ended up outside Newt’s fancy Washington apartment, when I say we I mean fucking hundreds of us. Newt had hospitably left his name on the apartment doorbell so we were ringing it like mad and leaving messages on his answer phone which soon filled up.

Mike Auberger asked me to sing the new song “Tear Down the Walls” and the “Ballad of Josie Evans,” but I hadn’t got my guitar. “Sing through the megaphone,” he said. I can tell you dear reader I was skeptical. After all, I was a musician and the sound system wasn’t any good, and I hadn’t had the sound checked, and where was my stage outfit? “Just do it!” said Mike and started chanting: “We want Johnny, we want Johnny!”

Reluctantly I closed my eyes and for the first time ever sang these songs unaccompanied. When I open my eyes after the songs the cops blocking the door were in tears as were many ADAPTers. I don’t think I have performed either song better since. This action was part of the stepping stone to getting Gingrich to introduce MiCASSA a couple of years later.

My other lasting memory of this action is all about my hat.

Another target was a big nursing home operator called Manor Care. On the last day we hit their headquarters, a huge building with grounds etc. The first strategy was to get in with a fall back of blocking the highway at the two entrances: One at the top of a long hill and one at the bottom. We did get a few people in but it ended up with us planning to block the highway at the top and bottom of the hill. Cell phones were not yet invented and we had no walkie-talkies. Instead, we had runners who went from one group to the other to communicate.

I was at the top of the hill next to Mike Auberger wearing the spectacular rainbow cap that was very much associated with me. Mike asked me to go down the hill and tell the other group to get ready and sort out who was prepared to get arrested. I flew down the hill flapping my arms in an attempt to be the first wheelchair user to fly! Unbeknown to me Mike had an afterthought that we needed a signal to coordinate when both groups took the highway so he sent another runner down with the signal which would start the action. The signal would be when Johnny takes off his hat!

We must have crossed as I strained to push back up the hill to rejoin my group. It was wet but I was sweating with the exertion. Half way back I stopped, took off my conspicuous hat to mop my worthy brow.

The group at the bottom moved into the road and by the time I got to the top they had also blocked the road. Mike was laughing (a rarity in itself) your fucking hat just started the fucking action! 125 people were arrested that day because I took off my hat!

Hats off and Happy Birthday ADAPT
FREE OUR PEOPLE!

ADAPT took on one of the ‘up-n-comer’ Republican governors, the bitter cold of an unusual October day in Michigan, the betrayal of a disability rights organization and incredible “multi-hit” targets in October of 1995.

To be quite honest, I was panicked that ADAPT was coming to Lansing, MI, my home state at the time, for fear that those of us active in ADAPT in Michigan would somehow let down the group or there wouldn’t be the “action” for a great national action we had all come to expect. In reality, it was one of the best actions I have ever been on (with some slight possible bias).

As part of the local leadership team, I was in the advance group driving around trying to figure out just what we were going to do and how—what were the targets to hit, and how would that be accomplished.

In advance of ADAPT coming to town, Verna and I had had several conversations with various folks within the disability community who were not part of, or particularly supportive of, ADAPT. Our hope was to get as much local support as possible; as well as get any “inside information” we might be able to. In doing this, we found out from a “leader of a state disability coalition,” who happened to live in the same “hood” as the governor, where the Governor’s Mansion was. We were able to get the address and we scoped out the location.

After our usual trainings and updates on Sunday, on Monday ADAPT set out to tackle one of the first “double-hits” that I have been involved in. We split the group in two, about 200 people each, and went to the two largest shopping malls in the Lansing area. The target? Waldenbooks, which was promoting Gingrich’s latest book, “To Renew America.” Folks were shuttled in the many vans that we had, gathering in the parking lots before the malls even opened. Then very shortly Waldenbooks opened, we all lined up and marched single file into the malls and flooded the two bookstores.

The only ones moving faster than ADAPT members were the “senior mall-walkers” and the store managers. These managers were quick to contact their headquarters, which in turn faxed our demand to Gingrich that he introduce CASA. This was an additional learning experience for folks, as many people picked up copies of small books on the US Constitution and Declaration of Independence and read aloud from them to the rest of the group. We imbedded our rights within ourselves through these actions. The Waldenbooks hit went so well and so quickly that we decided we had time for another hit.

Back to the vans, shuttling everyone to a church in the middle of town, just next to the State Republican Headquarters. Sounds like fun to me. Once all members got to the location, we swarmed into the Republican Headquarters and COMPLETELY filled the building—actually quite small, but ADAPT has a way of packing many wheelchairs into the smallest of areas. The demands—fax Gingrich to introduce CASA, call Governor Engler and set up a meeting with ADAPT.

The messages were sent, but one of the scariest times for me was when, due to how crowded we were, one “over-testeroned” young police officer, obviously terrified at being surrounded by a tightly-packed crowd of crips, tried to force his way through the building and was pushing people unnecessarily and viciously out of his way. This caused one young woman from Michigan who worked as a personal assistant to one of the members to try to protect and defend folks who were pushed to the ground. Unfortunately, this led to her arrest for allegedly “assaulting an officer.” Luckily the officer’s supervisor found out about his roughness from our members as well as his fellow officers and things de-escalated.

Three hits in one day…quite a feat!

Tuesday was our big test. We decided to go to Engler’s house because he had refused to meet with us, including not responding to our letter requesting a meeting that had been sent well in advance of ADAPT coming to Lansing. We were acting on the “under-cover” information we had been able to gather, and I admit I was scared to death that it might be the wrong address, which is always a concern for ADAPT when going to personal residences. As it turned out, my fear was misdirected. The address was correct, but as I found out later, the person who gave me the info had a change of heart and ended up calling the Governor’s office and telling him we were going to be there. But in true ADAPT style, the “long-term care gods” were watching over us.

We had gathered our hundreds of troops in a park out of sight of the governor’s house, freezing in the unusual frigid cold spell that had come in overnight. We headed out in true ADAPT stealth mode at just the right time. I happened to be up front and as we were getting closer, I turned to Stephanie on one side and Linda on the other, asking for suggestions about getting through the closed gate that came into view as we approached. In true ADAPT karmic fashion, just as we got to the closed gate, as though on cue, a carload of staffers headed away from the house, opening the slow moving gate – this was our chance! Everyone dashed for the gate before it closed, some stopping to hold the gate for others. We got well over 100 people inside the house grounds before the gate finally closed and the state police arrived.

I happened to be right at the front door, which seemed to be six-inches thick and solid mahogany or some other VERY hard wood. We knocked on the door, bruising our knuckles and chanting continuously about getting a meeting with the Governor until some of his staffers came to the house. They said the governor would not meet with us, but they offered up other department heads instead.

As hard as that administration tried, their message to the media about us being “terrorists of the Governor’s triplets” went unheeded by the press because they were seen being taken out the back door earlier in the day.

By late afternoon, it was obvious that we were not going to get our demands met, so we lined up and marched off of the Governor’s grounds, right through a gauntlet of media that had congregated throughout the day. I was the last person out and have never been so proud in my life. We had pulled it off in Michigan.

On the last day, when the weather turned back to a wonderfully warm fall day, we marched the two blocks to the state capitol, and after a quick press conference, ADAPT moved in every direction possible and completely shut down the building. Folks could not get in or out, except the foolishly determined ones who were “escaping” through ground floor windows.

This was a very proud day for me as a young friend of mine, who has a cognitive disability, but strongly believed in what we do, along with his mother for support, helped take over one of the side doors of the Michigan Capitol and he held it all day long. I was so proud of his diligence and commitment. At the same time, toward the end of the day, I experienced the opposite feelings as the state police forced one door open so the senators could get in and get on the floor. I watched many legislative friends and usual supporters decide it was more important to take their seat in the Senate rather than support us and not cross our line.

One of my less than fond memories of this action is remembering Bob K. and myself both continually getting out of our chairs and crawling past the police, only to have them carry us back each time to where we started. It seemed that every time we got carried back, the lower our pants went (mine at least), which my wife continues to refer to as the “two bare bobs.”

This particular action was a turning point in my life. It completely changed me from committing part time to ADAPT and part time to wheelchair tennis to committing wholly to ADAPT. It also proved to me the old adage—“Keep your friends close, your enemies closer.” I was so outraged with those members of the disability community in Michigan who either betrayed our confidence about hitting the Governor’s house, or who suddenly distanced themselves from our activism in the media that it took more than a year to get over. The power that ADAPT Michigan gained as a result of the action, and our overall ADAPT successes over the years since have left them in the dust, and more than validated every action we took. It truly set the tone in Michigan for “Nothing About Us Without Us!”

My story begins when I arrive at the airport in Memphis. I watched ADAPT members from Georgia navigate the chaos created by not having a direct flight to Houston. As I waited to board the plane I was overwhelmed by emotion. I have no words that describe the shame I felt the instant I realized I had spent my entire life lying to myself. I had believed I was conscious and responsive to situations and issues that surrounded my life. I used David to hide my face as if these strangers with disabilities would see me cry and know I had not only turned my back on our issues but I had turned my back on them. Before I met ADAPT I knew two types of people with disabilities, invalids and super gimps and my plans were never to be either one.

I was born in 1965 in the Mississippi Delta and institutionalized when I was three. I spent six months in Crippled Children’s Hospital in Memphis before the Doctors at Campbell’s Clinic admitted that my progress was measurable and I was able to go home to the Delta. For almost a decade I believed my eventual return and length of stay depended on my progress and performance. Today I understand it was not about me at all but about an empty nursing home bed.

As a little girl I spent time celebrating and emulating Dawn’s way, the rebellion I knew had taken place from the Delta of Mississippi to Memphis Tennessee. I had no comprehension of how close in time my life was to the recent history I wanted to be a part of, the birth of Rock and Roll and the Civil Rights Movement. When I fantasized about my life, I never dreamed two decades later I would be marching in the streets of Houston for my own civil rights.

Here are a few of my memories from Houston.

I had gone up to the room to settle in for what I thought would be the longest six days of my life. David had called to see how I was doing when I heard a knock at the door I said just a minute and I wiped the tears away. I didn’t know anyone in Houston so I could not imagine who was at the door. I opened the door and standing in front of me was Dorian Siegel. After saying hello, Dorian said I’ll be your attendant and he asked me what do you need. My response to him was change for a coke. When he stopped laughing Dorian explained what he meant. And his thirty-second explanation changed my life forever. It meant that in the morning I did not have to worry about taking at least forty-five minutes to put my shoes on but more important he answered a question I had contemplated for six years, how would I ever repay David for all he had done for me and if the time came, how would I take care of him.

I remember my little red sundress and white jacket (thanks’ Tom Cagle for the fashion advice).

I remember other first time ADAPT members Malachi Cunningham, Little Gordie Haug and Kevin Irvine.

I remember meeting Ron Ford and becoming best friends.

And I remember the energy in the room as we waited for our special guest to arrive, Secretary of HUD Henry Cisneros. I had only been working for the Memphis Center for Independent Living since mid March and had no prior experience with housing. I knew there were people working in housing authorities across the country, many their entire careers that would never have this opportunity. I understood the power of ADAPT.

The night of the party I was talking to Toby and shared with him that when I arrived on Saturday I said to myself, If I ever get my ass out of here I will never be back and by Wednesday night I knew I would die an ADAPT member.

Three national ADAPT actions in 7 years in Atlanta. This year’s targets were the American Health Care Association (AHCA), Republicans and Democrats.

Day 1
At a prearranged meeting ADAPT representatives from each state confronted Speaker Newt Gingrich about his lack of leadership on HR 2020, CASA, and ultimately hammered out an agreement to work together.

As these negotiations were taking place several hundred of us marched to the plaza in Centennial Olympic Park to hold a press conference and rally. At the press conference, Michigan ADAPT organizer Marva Ways read a resolution indicting the United States regarding its policy of institutionalizing people with disabilities. Emotions ran high as the crowd, in memory of friends and family who have died in institutions, planted flags in the grassy hillside along the plaza.

Day 2
Now it was time to confront the President. During the process of taking over the Georgia Democratic headquarters, 86 of us got arrested. It was the eve of the General Election, ironically Clinton lost Georgia. Faye Bonner, used her Arkansas connections to get the White House to call Air force One. Special Assistant to the President, Alexis Herman was flown to Atlanta to negotiate. She listened to our concerns and agreed to set up a meeting with the President in the first quarter of 1997, the protest ended about 11:00PM. One by one we were released.

Day 3
It had been a late night, so we started out later than usual. We headed to the Georgia Nursing Home Association. We shut down their offices and ultimately a six-lane highway in front of the building. By 6PM, the police delivered Fred Watson, the Association’s Executive Director, to us. Georgia ADAPT asked for his support for their state version of CASA, but all we got was lip service and head patting. At that point we lined up and marched to the nearest MARTA station. After arriving at our rendezvous point we marched to the AHCA hotel: The Marriott Marquis. The hotel had Red plush this, and gleaming chrome that; Crystal dangling from here, and mirrors sparkling from there.

Best of all: the Marriott Marquis had a thirty-plus-story-high open atrium in the center of the building.

We handcuffed ourselves together and started chanting. The echo worked its way up the atrium to all the interior rooms. Looking down on us, Fred’s fellow AHCA members. After a while some among us grew restless and started to crawl up a set of escalators that had been turned off. The police made the AHCA conventioneers leave the common areas, and began to arrest. City buses were lined up in the circular drive in front of the hotel and busload-by-busload we were hauled off. It was almost six in the morning before the last of the crowd, total, 101, was taken away. About noon the last of us had been processed, released and brought back to our hotel for some much needed sleep.

Party Time
After a long snap, wrap up meeting and a Southern buffet supper, DJ Leonard Roscoe, himself freed from a state hospital in GA, had us rocking and rolling. Intense private conversations, political debates and plenty of laughter punctuated the party as folks from across the country enjoyed our last few hours in the South.

A Little History
A brick has been placed in Olympic Centennial Park, at marker 200, to commemorate this and the previous actions in Atlanta.

ADAPT’s two week Action in Washington D.C, happened after working with Legislators for three years. Promises had been made and now we had to ensure that they were kept. Some leaders stayed the entire two weeks. They felt the extra pounce would get some things done! People reported to me that the first week was great because having two hundred and fifty people made the group more manageable, people could remember everyone’s name, but being ADAPT we like to be together and we missed the people we didn’t see.

I arrived the second week; Sunday was the usual meetings and workshops.

When Monday the 21st of June, 1997 came people wanted this to be the hard hit! ADAPT wanted action. They worked three years with Newt’s office and we where being told that they would introduce the bill but we had not yet seen a written bill. Tension and anger where growing, too much talk and not enough action! We expected a long and hard hit even an overnight Vigil. We marched to the Capital and staged a Newt watch right in the Rotunda, acting as if we might be moving in for good!

Our first deadline was 12 noon it went bye and Newt had nothing new to report “they are working with the legislative Council and needed time”, thus, ADAPT agreed to wait.

As we waited a few of us, went off to talk to legislator trying to gain support on our issues. Explaining that people needed choice, why couldn’t people live in their own homes? Some inmates shared stories about the abuse they faced in nursing homes. Minority Leader Dick Gephardt finally agreed to speak with a small group of us and committed his support for the principals of CASA, also New Mexico ADAPT worked with Senator Pete Domenici right outside the Senate floor and they presented him with an ADAPT T-shirt.

By 5 pm, we where making progress with getting feelers out on what we wanted, gaining congressional support. At six the Police started to worry we would never leave, as we chanted our homes not nursing homes, the police were communicating with Gingrich’s office and came and reported that the legislative Council would sit down with a small group of us in the basement of the Rayburn building. Together we would write our legislation. This process took hours. The large group of ADAPT our power, supported us with a vigil outside at the horse shoe of the Rayburn.

Bob Kafka was so sick in those negotiations, he was tired, had a fever and chills, this did not affect his brain power, he was able to speak about the changes needed in Medicaid. Steve Gold was supporting us with his knowledge of Medicaid and especially of the money follows the person piece of CASA. Also, Mike O and me kept our focus on consumer control and co-pays so working crips could get services and Zan with her brains helped with language. Steve and Zan went to the horseshoe and kept the real power behind us, our soldiers informed about this process. A great team, ADAPT showed it power by staying.

At 12 AM, finally our small group came out to the horseshoe with legislation in hand. Yes, legislation ADAPT could be proud to have introduced and we were promised that this would happen before we left Washington. We said great, because we are not leaving Washington until it is introduced.

On Tuesday we went to the US Department of Transportation, because they were years behind in developing regulations for the over the road bus system like Greyhound. Even with a smaller group about 250 people we blocked all four entrances and many people got inside. As always we came prepared with our Chants “We will ride, Access is a civil right” and some of us chained ourselves to the doors. At first they could not reach Secretary Slater as we put the pressure on, with our bag of tricks, handcuffs and all, finally they reach Slater who agreed to meet with ADAPT in three weeks.

The People United will never be defeated and with that in mind it was back to the hotel.

Meanwhile, Mike Auberger gets a call that CASA now was introduced as MiCASA HR 2020 we could not have requested better house numbers. Boy that was a great day it seems our constant two-week push was paying off with real results.

Wednesdays we decided was best used to get legislators on board. ADAPT lobbies as only ADAPT could – breaking up in color groups of four and delivering our new legislation to at least 400 offices, in three different buildings. I think we shocked many legislators who had only seen us demonstrate. Now we were educating why we go to such lengths! Only ex-inmates can share stories of neglect, abuse and our desire to have everyone in America get a real choice. Most people would rather be in their own home. ADAPT’s passion on wanting everyone to have the community based services that wanted them shined through.

Another small group of representatives went to the White House the old Executive Office building. This meeting was given as a result of the first week of Actions. The Democrats were quite clear that the Republicans killed a bill last year and they would not support a bill that a Republicans were supporting. They wanted studies, pilots etc. They committed to pay someone to look at the barriers that Medicaid regulations created. The best comment came from one of us, Kathleen Kleinman who summed up the meeting with every three minutes someone in a Nursing home dies. While we have been talking 27 people have died! Let’s free our people.

Now it was time for ADAPT to party!

1997 was a watershed year for ADAPT and the introduction of the first version of the Community Services Act: MiCASA – The Medicaid Community Services Act. It was a year we made our presence known, in no uncertain terms, to the politicians and pundits in Washington, D.C. We were tired of broken promises and bureaucratic runarounds. The Clinton administration had promised to meet with us by March of 1997 and had not come through. In June, we arranged to come to Washington in waves and be there for 2 weeks. We also came back in September, just to make sure they knew we were serious.

At that time, we were also still locked in battle with “That Dirty Dog” Greyhound Bus Company and a Department of Transportation that refused to enforce the ADA regulations to allow us access to intrastate and interstate bus travel.

In June, there was no room at the inn for meeting space. The hotel wanted to charge $11,000 for a meeting room. Ever resourceful, ADAPT held meetings on level P-2 of the parking garage. I’d been coming to actions off and on since 1987 and those parking garage meetings were some of the best ever. There’s something about the ADAPT spirit. We take making lemonade out of lemons to expanded levels. We were at our most creative, rowdiest and outspoken in those P-2 meetings. And my-oh-my-blueberry pie, that last night’s party…did we dance the night away! That garage was rockin’ til’ the wee hours.

1997 was a year of hope and grief for me. The June actions were full of hope—I was sure MiCASA would be law within 5 years. I lived in DC then, with my late husband, Evan Kemp and we both went to the June actions. He’d been in the Bush 1 administration as Chairman of the EEOC when he “found” ADAPT in 1987. He and Wade Blank bonded over the Cleveland Browns. Evan had been in the disability rights movement since the late 1970’s but he really found his “soul” home when he went to his first ADAPT action. (I’d come of age in the ‘60’s so ADAPT felt right from ‘jump street’). By 1997, Evan had moved out of the DC “fake power” scene (we know who has the real power…the grassroots). His goal was to get arrested at an ADAPT action before he died.

We were all in the Capitol rotunda and had refused to leave without a meeting with Newt Gingrich, then Speaker of the House. The police were threatening and antsy. Evan was excited—sure he’d get arrested. Then Newt agreed to meet with ADAPT and later that year introduced MiCASA as HR 2020. Evan and I went home happy that ADAPT triumphed but he was looking forward to the next day in hopes of being arrested.

The next day we blocked the AHCA (American Health Care Association) building in downtown Washington. Traffic ground to a halt. We wanted to get the group that represented nursing homes to agree to the principle of choice and ending the institutional bias. AHCA board and leadership were out of town at a meeting so it took awhile-faxing back and forth before a letter came committing to a meeting with ADAPT. Still no arrests.

Then the White House and Department of Transportation were the targets of actions. Both agreed to ADAPT demands and there were no arrests the entire week.

The following August 12, Evan died of a massive heart attack. He never lived to get arrested. During the September action- I was a grief stricken basket case. Tom Olin, Cassie James and our troubadour, “Johnny Crescendo” almost had to carry me from one place to the next. Yet when the ADAPT family gathered ‘round and hosted a memorial service for Evan on the steps of the Capitol, I knew I would “keep on keepin’ on.” There was reason to live, work to do, and the ADAPT family to do it with

The grief is long gone and hope still springs eternal. As I write about 1997 in 2008, MiCASA has morphed into the Community Services Act and our people still are forced to live in nursing homes and other institutions.

Yet ADAPT will never give up. We’ve grown. Many more have joined us and there are youth leaders to take up the torch and FREE OUR PEOPLE.