Archive for May, 2008

CDR has a blog!

Wednesday, May 28th, 2008

Guess what folks? The Center for Disability Rights (CDR) has entered the Blogosphere! Bruce and a few others got together, rolled up their sleeves, and busted their humps to produce this nice looking page with cool and interesting topics. Each day, a different CDR staff will post about what’s going on, as well as stuff that interests them. Some staff will be regular posters, but we’ll have guest posters, too. Folks are more than welcome to register (trust me, it’s easy!) and comment.

Here is the official announcement:

I am happy to let you know that the Center for Disability Rights has recently released a new blog on its website! We plan to provide you all with a great deal of content and lively discussion. We’ll have staff and guest bloggers posting new content every day and we will be addressing issues as far ranging as sex/sexuality and program provision in Medicaid Waivers. Of course, we will have an intense focus on the issues that most affect people with disabilities across Rochester, New York State and the rest of the Nation.

Let’s hear from Chris about some of his vision for the CDR Blog:

Right now, there really is no blog that appears to be the “official voice” of people with disabilities in New York State.  I want us to position as the foremost blog on disability issues in New York.  We’ll tackle issues… discuss program provision and best practices… talk about disability culture… approach controversial issues… spread action alerts…

So, we should have a professional appearance and language, but we should write in a way that is understandable for people that don’t live and breathe this stuff everyday – no jargon, no acronyms.  Of course, NO personal attacks… but pointing to the facts of a problem is acceptable.  After all we are CDR.  I want to get to a point where our blog is read frequently by people with disabilities, media people, politicians and their staff, as well as people who are loosely interested in disability issues such students, teachers and more.

Cool, eh? I am proud to be one of the staffers who will post regularly, so go on over and check it out! http://rochestercdr.org/wordpress/

Gremmy has a page!

Friday, May 23rd, 2008

Gremmy, the unofficial ADAPT mascot, now has a spot on Facebook, and a video, to boot! Check it out!

http://www.facebook.com/pages/Gremmy/13864866767?ref=s

You’ll see his video, which was shown at the end of the I Am ADAPT Show, and some cool fan pics!

Rolling, Rolling, Rolling…

Friday, May 23rd, 2008

…keep those legislators rolling, RAWHIDE!! Er, ahem, I got a little overexcited there, but I’m back now. Check out who signed on to the Community Choice Act!

Rep McHugh, John M. [NY-23] – 5/21/2008
Rep Salazar, John T. [CO-3] – 5/21/2008
Rep Serrano, Jose E. [NY-16] – 5/21/2008

WhooHoo! Two more for New York, and another for Colorado! That brings us to 107 members of the House who have signed on. From what I hear, we’re approaching a record. Congratulations to the Colorado folks–they’re up to five co-sponsors–more than they’ve ever had!

We got another Senator!

Wednesday, May 14th, 2008

Check this out! Look who signed on on to the Community Choice Act yesterday:

Sen Roberts, Pat [KS] – 5/13/2008

He is only the second senator to sign on in 2008. Way to go Kansas folks!!!

They Keep On Coming!

Wednesday, May 14th, 2008

Check out the latest list of co-sponsors of the Community Choice Act!

Rep Allen, Thomas H. [ME-1] – 4/30/2008
Rep Carney, Christopher P. [PA-10] – 5/1/2008
Rep Carson, Andre [IN-7] – 5/1/2008
Rep Clarke, Yvette D. [NY-11] – 5/1/2008
Rep Engel, Eliot L. [NY-17] – 5/6/2008
Rep Filner, Bob [CA-51] – 4/23/2008
Rep Fossella, Vito [NY-13] – 5/6/2008
Rep Gonzalez, Charles A. [TX-20] – 4/24/2008
Rep Lee, Barbara [CA-9] – 5/13/2008
Rep McCollum, Betty [MN-4] – 4/30/2008
Rep McCotter, Thaddeus G. [MI-11] – 5/6/2008
Rep Meeks, Gregory W. [NY-6] – 4/30/2008
Rep Olver, John W. [MA-1] – 5/1/2008
Rep Porter, Jon C. [NV-3] – 5/1/2008
Rep Rahall, Nick J., II [WV-3] – 4/17/2008
Rep Sestak, Joe [PA-7] – 5/1/2008
Rep Tiahrt, Todd [KS-4] – 5/1/2008
Rep Velazquez, Nydia M. [NY-12] – 5/1/2008

Keep’em coming, folks! Keep ‘em coming!

Live from the 25-Celebration Day

Friday, May 9th, 2008

I woke up Thursday excited to experience this day of celebrations of ADAPT’s 25th birthday. Actually, the celebrations began on Wednesday evening, with an informal reception in the Discovery Room, which held the breathtakingly unbelieveable exhibits that the Denver crew brought in. The walls of the entire room were covered in framed narratives written by ADAPT members. These spanned the entire time, from 1983 until the present, and included a picture of the ADAPT member, so that we could see who that person was, in case we didn’t recognize them by name. I am proud to say that my narrative was there! I reported on the 1992 Chicago action, and the narrative was titled, “When ADAPT Blew Through Chicago in 1992, I WAS THERE!”

There were also pictures of ADAPT actions going all the way back, as well as every T-shirt from every action, from the beginning until now. I went around that room having intense flashbacks of every description, the thoughts, sights, sounds, emotions, even the smells. I noticed the writing styles of the newspaper reporters changing over the era (yes, ERA–if you think about it, it’ll blow your mind, as it did mine). I looked at the pictures and marvelled at the fact that many of us, including me, have grey hairs now. I don’t know if I have the words to describe the feelings that came over, and how I miss Wade, JoAnne, Lee, Brooke, Leonard, Mark, Rev. Willie, and all of the ADAPT warriors who have gone to join the Ancestors.

After the reception, there was a showing of the movie called, “When You Remember Me“. The Emmy-nominated movie stars Fred Savage, Kevin Spacey, and Ellen Burstyn, and is the story of how Wade Blank was able to free the original members of Atlantis Community from a nursing facility. These young people were the original ADAPT members before ADAPT was born. Larry Ruiz, one of the original folks freed from that nursing home was there at the celebration. He is a dear friend of mine whom I’ve known all of my adult life. Linda Andre, another of the original folks, was there as well.

I was sitting with the Rochester Crew watching the movie, and many of them cried, and cheered at that final scene. Some in our group, knowing that I was from Denver, asked me did I know Wade, and I told them, ” yes, I was blessed, and honored to know and work with him.” Larry and I shared Wade stories with them. It was a very poignant, bittersweet evening.

Thursday morning, I sat with a bunch of ADAPTers for the ”Remember When“ session, hosted by Mark Johnson. Some of the Rochester Crew came down, too. Tim Wheat videotaped the whole thing. We started off with Frank Lozano telling his story, and being interviewd by Mark. I love Frank! I have known him all of my adult life, and he was my supervisor for a time, when I worked in the Colorado Springs office of Atlantis Community. We worked so well together! Frank is such a positive, supportive, and gentle person, and I still have fond memories of our work and advocacy.

Several other people told their stories, including Mary who was on a bus being blocked by ADAPT in Long beach, CA, back in the early days before my time. She told of her thoughts, and it felt being in that position, then went on to describe how things came full circle when she had her accident, and began using a wheelchair, and a few years later, her husband, too, had an accident, and began using a wheelchair. Mary said that she felt honored being on the other side now, and being with ADAPT. This was her first action, and she was going to be back!

I, too, told my story. Mark made me go into full details about my work with Dennis Schreiber, and how I got started in ADAPT, how I began as an interpreter and attendant, and my first action, as well as my first arrest. I sopke of that first national action (DC Siege/DOT) back in March of 1988, and how bitter cold it was. ADAPT had taken over the Department of Transportation (DOT) in an effort to get then secretary, Sam Skinner, to agree to put lifts on all buses. We held that building, inside and outside, all day, through the night, and into the next day. It was -4 degrees outside, and not much warmer inside. We were denied access to restrooms, and had no food, but a few snacks, which we shared. A camera crew had left behind some Perrier water, and that was it. I remember helping people to empty urinals, and hiding it in the mail room because we were not allowed to use the bathrooms. I remember that Mitch Snyder, who ran an organization that helped people who were homeless came by, along with Yoshiko Dart. They had blankets, hot soup, and food for those outside the building. I clearly remember ADAPTers who were on the outside trying to slip slices of wrapped American cheese through the cracks in the doors, so that those of us inside could at least have a morsel to eat.

We finally left about midmorning, or early afternoon. Did we go back to the hotel and rest? Nooooooooo!!! We went straightaway and started blocking buses! Some folks got arrested, but that was not to be for me. My first arrest would come on the very next action.

Needless to say, I was hooked, and vowed never to miss an action. To this day, I have only missed about four or five actions in twenty years of coming on national actions.

During the session, Jennifer McPhail, from Texas asked me if I had any rituals that I did to prepare myself for an upcoming ADAPT action. Actually, I do. That week before, I look at all of my old photos to get myself pumped up. I eat more food than usual because I know that I’ll be too busy to eat while I’m there on the action. I buy Hall’s cough drops, and eat then like candy to prepare myself for five days of chanting. I look at all of my ADAPT T-shirts to put me in a particular frame of mind for the week. Thats just some of the rituals that I do to prepare myself mentally and emotionally for ADAPT.

After the Remember When gathering, I hurried upstairs to room 753. StoryCorps folks were there to record stories and interviews of ADAPT members. There were six pairs of us doing this, and I was honored to be one of the ones asked to participate. If you are not familiar with StoryCorps, it ia a project begun several years ago to record stories of ordinary people, and the history that they may have lived, or created. It is aired on Mondays on most NPR stations, and the stories are archived in the Library of Congress for posterity.

I interviewed with Randy Alexander, from Memphis. Randy was one of the Day leaders, and has been in ADAPT for about ten years or more. Randy is a really cool person, and I enjoy working with him. We interviewed each other for about 40 minutes about how we came to ADAPT, our first actions, our first arrests, and our hopes and dreams for ADAPT. We took pictures for the archives-one by ourselves, and one together. After the interview, we were given a CD, which I burned to my hard drive. I gave Randy the original CD, which he will, in turn, give to Stephanie. National ADAPT will keep these, and get copies of all the interviews to everyone. They will also be kept in the ADAPT archives.

Afterwards, I went to the Barbeque. The food was good. There were hot dogs, hamburgers, pop, fruit, chips, and all the trimmings. There was a presentation for all of the sponsors of the celebration. Our center, the Center for Disability Rights, was one of the of the honorees. I ran into Andy Imparato, and Anne Sommers of AAPD. I was glad to see them, and now, I DO remember Anne!

The Barbeque wasn’t even over when I had to leave to participate in a sound check for the I Am ADAPT Show. All of us who were in the Show got there, and did a sound check and lined up in our places. I learned at the last minute that in addition to my I Am ADAPT piece, that I would be singing Happy Birthday with Jimmi. Actually, I didn’t feel bad about that at all, as we practiced a couple of times. What I was nervous about was what I would say for the I Am ADAPT piece. You see, I never write down a speech, or presentation. I have found that without exception, once I start, the words just come to me. I don’t know how, or why it is, but if I write down what I have to say, then, I end up stumbling and stammering. Eventually, I took a deep breath and decided that everything would be just fine. Just as we finished practicing, it was time. The Show was on!

The Show was a combination of video pieces, live perfomances, and presentations, all expertly hosted by Jimmi. To say that Jimmi is special to me is a vast understatement. We adopted each other as sister and brother. It was a pure honor to be able to be on stage with him!

Here is the pre-show video. It was eventually adapted (’scuse the pun) a bit for the Show. I love the music, and literally stood up and danced to it during the Show.
http://endeavorfreedom.ning.com/video/video/show?id=942302%3AVideo%3A24335

There was a vidoe about Wade, and his life, then, Babs, who has been in since the beginning, spoke about Wade, and what he meant to her. Babs ia another ADAPTer whom I love. I have known Babs all of my adult life. She was one of the first national ADAPT people that I met, after Wade and Molly. Babs an I have always worked well together. One of the more memorable projects that we worked on was The Battle of HCPF, a two-week successful vigil at the State Human Services building in downtown Denver back in 2002. After Babs’s presentation, she was recognized for her longtime activities and work with ADAPT. Indded, Babs is considered the Mother of ADAPT. She received some beautiful roses from everyone.

A lot of this is a blur to me. I remember that Rep. Pat Shroeder was there, and spoke about what it was like to come to that first action back in 1978–the shot heard ’round the world, if you will. After that, there were presentations and videos from the original Gang of 19, the original ADAPT kid, Tisha, Babs’s daughter, whom I ‘ve known since she was 16, and who now has a beautiful 12-year-old son, Malachai.

I was with the Free Our People part of the Show, one of the ones who had been institutionalized, but was now free. I kept my presentation short and sweet. I did well, as I suspected I would.

There were songs by Johnny Crescendo, Elaine Kolb, and Diane Coleman. There was a presentation by ADAPT youth who had grown up in ADAPT, as well as future leaders of ADAPT youth, who gave their presentation in Spanish, English, and American Sign Language. There were presentations by people who serve as attendants in ADAPT, and the folks who put together the Free Our People March. There was so much that I can’t remember, but I know that it was videotaped for our archives.

The last piece was Jimmi and I singing Happy Birthday To ADAPT, along with some cake. then, there was a final video–our Rochester, and ADAPT mascot, Gremmie, with a birthday video to ADAPT. It was quite hilarious! I really enjoyed the Show, and was honored to be a part of it!

Afterwards, was the traditional ADAPT party and dance, with cake, and a DJ. I thoroughly enjoyed it, and took the opportunity to announce my engagement to my partner, Lisa, and showed off The Ring. We plan to get married next year, and are seriously considering going to Canada to do the Blessed Deed.

Too soon, it seemed, things were done, tomorrow had come, and we were saying goodbye to our ADAPT family and getting on the bus to go home. I was exhausted, but would do it all again, and I can’t wait until the Fall Action in September!

Live from the 25-The Scouring of the Hill

Friday, May 9th, 2008

Wednesday is the traditional day during the week that ADAPT scours the Hill. By this, I mean that we visit all 535 members of Congress and the senate and give them information on the Community Choice Act.

This time, it was a bit different. We made a list of each chapter that actually made appointments with their legislators. I made appointments for Rochester with Reps. Walsh, Kuhl, and Reynolds, and Senators Clinton and Schumer. All but Reynolds have signed on to CCA. We did not make an appointment with Rep. Slaughter (another CCA co-sponsor), as she had just visited us at our office in Rochester on the previous Monday.

Anyway, those who had appointments got special packets with detailed information about the Community Choice Act. Rather than gather in groups by color (green, red, etc.), we gathered by state. Rochester alone had 57 people, not counting those folks from New York City, Albany, and Syracuse, so of course, New York State had a huge crowd!

I did not get to go to the visits, as I had to stay behind for the dress rehersal of the I Am ADAPT show. I heard from Terrie that the meetings went well. What I do know is that since those visits, the number of CCA co-sponsors in the House has gone up from 88 to 103! Three members of Congress signed on the day that we visited (April 30th), while eight signed on the very next day (May 1st), and three signed up on May 6th. Five of those co-sponsors were from New York. They are:

Rep Clarke, Yvette D. [NY-11] – 5/1/2008

Rep Engel, Eliot L. [NY-17] – 5/6/2008

Rep Fossella, Vito [NY-13] – 5/6/2008

Rep Meeks, Gregory W. [NY-6] – 4/30/2008

Rep Velazquez, Nydia M. [NY-12] – 5/1/2008

As you can see, Rep. Meeks signed on the day that ADAPT came calling, and Reps. Clark and Velazquez signed on the next day! Keep up the good work, everyone!

Live from the 25-The NGA and the hits on McCain and the RNC

Thursday, May 8th, 2008

Pardon the tardiness of the post. I’m still recovering from DC!

Though it was a bit nippy outside, Tuesday dawned bright and sunny. ADAPT headed over to the National Governors’ Association (NGA) to hold a press conference of the best and worst states for community-based services. We went to the NGA because the governors have the power to really push for the passing of the Community Choice Act. Randy Alexander, from Memphis, TN, spoke about the MCIL Underground Railroad, a program that has been in place for over a decade, that helps people from Tenessee move to other states (mainly Colorado) so that they can live in the community. They have to do this because home helth care is almost unheard ofthere. We also heard from Latonya Reeves, the first Underground Railroader, who moved from Memphis, TN, to Denver, CO, seventeen years ago. She spoke of what it was like to move, and leave her family behind, but she also spoke of the freedom that she now has in Colorado. She stated that Colorado is not perfect, but she is better off there than in a nursing facility back home. Nadina LaSpina, from NYC also spoke about a woman whom she helped to move from Alabama to New York. Nadia, the woman who Nadina helped, also spoke. Another woman from Arkansas spoke on her long incarceration in a psychiatric institution, and her fight to finally be free.

Here is the list of the best and the worst states:

The states are listed alphabetically, not ranked numerically;

TEN BEST STATES
Alaska
Colorado
Maine
Massachusetts
Michigan
Minnesota
New Hampshire
Oregon
Rhode Island
Vermont

HONORABLE MENTION
Kansas
New York
Washington
Wisconsin
Wyoming

TEN WORST STATES
Arkansas
Georgia
Florida
Illinois
Indiana
Louisiana
Mississippi
North Dakota
Tennessee
Texas

DISHONORABLE MENTION
Alabama
District of Columbia
New Jersey
Ohio
Pennsylvania

We then went across the street to dine on ADAPT steak in the park. For those who don’t know what ADAPT steak is, its McDonald’s hamburgers, usually cold by the time we get them, but they fuel us for long days of actions, so I’m not complaining.

We then broke up into two groups and did a double hit on the headquarters of the RNC and the office of Sen. John McCain (R-AZ), the presumptive Republican candidate for President. McCain has not signed on to the Community Choice Act. ADAPTers who were in the hallway just outside McCain’s office were arrested fairly quickly. There was a group inside McCain’s office than hung in there until after 7:00 pm, when they, too, were arrested. The rest of the group came over to join us at the RNC.

I was in the group at the RNC. We encircled the entire building, including the parking garage and alleyway, and someof us actually got inside the building. I was outside since I got into the HHS yesterday, I wanted to give my fellow Day Leader to opportunity to go inside, or get arrested if he chose to. As a Day Leader, I was on the negotiation team, and to say that the negotiations went sour isn’t saying it strongly enough. It actually got down to five words, and the substitution of “attempt to set up a meeting with McCain’s campaign rep”, to “attempt to set up a meeting with Senator McCain”. The legal counsel for the RNC claimed that they did not have the power to set up a meeting with McCain. I felt that that was utter you-know-what, and we said so, in so many words. We would not accept that, so the negotiations were off, and we continued chanting and singing loud and strong until about 11:00 at night, when we were forcibly removed from the building and the doors. believe me, the Democrats took full advantage of the RNC’s and McCain’s folly, and plastered it all over their websites and Roll Call magazine, which goes to every senator and member of Congress. While we were out there at the RNC, we got visits from Reps. Janice Schakowsky, Patrick Kennedy, and Gwen Moore, who actually sang and chanted with us for more than an hour before she told us who she was! Incidently, all of these folks are co-sponsors of CCA.

So, although we made no headway with the RNC or McCain, we did expose this conflict with them, and let them show us their true colors. FREE OUR PEOPLE!!!

Live From the 25–The HHS Hit

Monday, May 5th, 2008

Again, I apologize for the tardiness of this post. I was never able to stay online for more than 5 minutes, so I decided to fill you all in when I got home, and got somewhat recovered.

Monday was rainy and cold, but there was this sense of excitment in the air. I was a Day Leader for the week. One of the things that a Day Leader does is negotiate with the targets and the police. I was attached to the Blue team, and had decided that once we reached our target, I would try to get in. I knew that several ADAPTERS had penetrated the building earlier, but that was no guarantee that we would get in.

I know that we chanted loud and strong as we were marching, but I was deeply focused on getting inside, so I can’t remember what we chanted, or if I even chanted. I was looking to reach a certain point, then, I would make a call as an alert, then hopefully, all would go well. I sent out some words to the Universe that I would not mess up, and that the ADAPT deities would smile on us, as they often did.

The ADAPT deities did not disappoint! We reached the spot, I made the call, and a few seconds later, we were rounding the corner to our target, the department of Health and Human Services (HHS)! I saw a guy in a yellow shirt and tie (it was actually Bruce) open the door. “GO, GO, GO!” I heard myself shouting, and charged the door with such force that I almost flew out of my wheelchair. Without missing a beat, I righted myself, and speed inside, shouting at the top of my lungs, COME ON, MOVE, MOVE, MOVE, NOW!!! LET’S GO, as I lead them straight to the back of the building, where there were double doors. The adrenaline was pumping hard! We were in a race with cops and security to see who would get to those doors first. Fortunately, ADAPT made it first. I hit the doors, spun around, and yelled, HIT IT NOW!, SHUT ‘EM DOWN! SHUT ‘EM DOWN NOW!! YEAH!! as 14 ADAPTers closed in on every door on that end. One lone security guard tried to capture the door, but to no avail. He soon gave up. There was a commotion at the door at the other end, where we had come in. Bruce, who’d opened the door for us, was dragged out by the cops, but managed to get back in. He tried jamming the door with his foot, and got his foot jacked up. The cops wrestled him to the ground and tried to drag him out, but a strong young ADAPT woman dragged him back in, and he came to where we were.

Meanwhile, we were chanting and singing, “Aint gonna let nobody turn me around!” Suddenly, there was singing and clapping from above us. I thought at first, that some of us had made it to the second floor, but, to my amazement, it was HHS staff singing and chanting with us! I managed to get some pictures and video, but then, my phone died. It had gotten wet. So much for blogging and uploading pics and videos. Bummer!

We kept up the chanting and singing for quite some time. I noticed that half of our group were new folks on their first action, including two from Rochester! I was SO proud of them! They stood strong, and were even willing to be arrested if it came to that.

As I calmed down, I realized that we’d done it. We got into HHS for the first time in 17 years! 75 ADAPT folks got into that building! Normally, if someone in a wheelchair so much as passed by there, security would get nervous. If more than two people in chairs passed by, they’d literally shut the place down! I’m not kidding. When 10 ADAPT members, including myself were invited to meet with then HHS Secretary Donna Shalala back in the ’90s, we were locked out, even though we had a meeting! It took them forever to call upstairs and confirm the meeting. Oddly, security had been lax recently, and that played a part in us getting in. I guarantee you though, that building was shut down tight the rest ot the time that ADAPT was in DC!

Why was ADAPT hitting HHS, you might ask? Good question. Until recently, we had a good relationship with HHS; there had been many meetings, and good dialogue. However, there had been some devastating new interim final rules involving targeted case management, and spousal impoverishment that had come down the pike. These new rules reinforced the institutional bias in long term care, making it difficult to transition people from nursing facilities and other institutions back into the community. ADAPT had had enough, and we wanted a meeting with HHS Secretary, Mike Leavitt to work things out.

Bruce and I were Day Leaders, so we tried keeping up with what was going on in other parts of the building. Since my phone was dead, we used Bruce’s phone. We learned that Philo Hall, with HHS was meeting with the negotiation team. Since Bruce and I were way in the back, the team had to negotiate with the cops, security, and Philo, to get us up there. After a while, we were able to join the rest of the negotiating team, leaving our group in the very capable hands of Bernard, a Color Leader with the Blue team.

We were escorted to where the rest of the leadership/negotiation team were, and updated on everything. Two of our folks had been arrested, and taken away. In fact, we saw them being led past where we originally were, way in the back. We wanted to know their whereabouts, and to see if they could be ticketed and released with us, but they were already in the system. The cops were really upset, and security, and the Powers That Be were VERY nervous, and really wanted us out of the building, as there were to be talks held with the Chinese delegation about food safety in light of the recent revelations regarding Chinese imports. Needless to say, the officials didn’t want the Chinese seeing the chaos of a protest taking place. Personally, I didn’t give a hoot and a hill of beans, and secretly wished that the Chinese would see the protest.

We then had to work out the gnarly details of getting a meeting with Secretary Leavitt. After a lot of back and forth, and round and round, and tempers flaring, and calming down, we hammered out an agreement. Leavitt would meet with ADAPT leadership within 30 days. We would meet with Philo, and some of the HHS bigwigs and policymakers immediately to discuss what would be spoken of the meeting with Secretary Leavitt, then, have a follow-up meeting later in the week. HHS also committed to having quarterly meetings with ADAPT to work on issues, and to consult with, and keep each other updated on other things that impact the disability community.

All in all, it was a victorious day for ADAPT. HHS felt our strength and power. FREE OUR PEOPLE!!!