Author: National ADAPT

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.

[youtube https://www.youtube.com/watch?v=gT_QExcN35s&w=720&h=405]

I’m supposed to be a Combat Reporter …

SUNDAY-I came dressed Combat Ready… as it was 1998. I wasn’t even using my chair yet. We were in Memphis, with reactionaries in control. I forget the name of the hotel, but as a radical Civil Rights Protester down in the Deep South. The first day was orientation, a new people’ meeting, a legal meeting, etc…

ADAPT visited the worse nursing home in the worst state. We were there to say we care and left flowers for people trapped inside. The nursing home administration was afraid of us; they had surrounded the nursing home with a bright orange construction fence. Although the fence was to keep us out, it stood for how much the nursing home industry wanted to keep people in.

MANIC MONDAY-we really did our thing. What I remember is we had a typical “Berkeley sit-in” at the Tennessee governor’s office with the “Ten Worse States for Community Service.” Pennsylvania, I’m sad to say, got a Dishonorable Mention. We took over the building and all the elevators. I made it all the way up to the governor’s office and I sat in the CEO’s desk with the “report card.” Then we blasted the room and halls with our famous chants, like: “BUSSINESS AS USUAL, IT AIN’T GONNA’ HAPPEN!” I of course had to do a “HELL NO! WE WON’T GO!” and “6, 5, 4, 3, THIS AIN’T NAZI GERMANY!”

When the Fuzz came, the chant “WE’D RATHER GO TO JAIL THAN TO DIE IN A NURSING HOME” rang out, and I gave my wildcat “NOW” at the end just to irritate them. The bureaucrats were really insulted because we wouldn’t MOVE AN INCH.

We did have a lot of media, which embarrassed them greatly. “I’D RATHER GO TO JAIL THAN DIE IN A NURSING HOME”- YOU MEAN DEATH CAMP! – I’m Jewish – I QUALIFY!

TUESDAY-Here’s the main report – we were in the plaza waiting for negotiations all day, while we were strung along – the one thing I clearly remember, is that we were exhausted, though we got A LOT of press this day.

WEDNESDAY – We marched to the Federal Building. We blocked them all in because Tennessee is bad, but other places like Pennsylvania need to get the message.

I think that the “bomb scare” at the end in the early evening was just a ploy to make us leave, as we couldn’t be sure if it was real or not. We left, BUT WE EMBARRASSED THE SHIT OUT OF THEM!

I GOT TO MORTIFY MY SISTER-have you ever heard of a Jew working at Auschwitz? MY SISTER WORKS AT A NURSING HOME-AND THEY FIRED HER BECAUSE SHE HAS A RELATIVE IN ADAPT!

NEVER SURRENDER, NEVER AGAIN!

[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.