Tuesday, July 18, 2006

Bioethics: a primer for academics on civil rights and open discourse

Here is my journalque entry of a protest I was involved in last week:

The morning of July 13th, 2006 started with a consistent wet rain drizzle covering the City of Albany NY. To support “Not Dead Yet”, a busload of Rochester activists traveled to the state’s capital to make their voices heard at the Alden March Bioethics Conference being held at the Crowne Plaza Hotel. They were joined by others from Binghamton, Albany, and the Chicago area.

At 10:00 AM, Bruce Darling greeted the Rochester ADAPTers as they disembarked from the bus. From the bus, the forty-plus activists ventured across the street to stay dry under the awnings of the Ten Eyck Building. A few staff and security appeared nervous, and inquired if the group was there to protest (perhaps at the Office of Disabilities, located in the building). However, the group was focused upon getting into the local cafeteria, to use the facilities and get something to eat. Around 11:30 AM, the group enjoyed hamburgers and fries. About an hour later the group gathered themselves, into a single line outside, to wait. The weather cooperated, as the rain finally stopped, and the sun heated up the city and the group.

At approximately 1:30 PM, the group, wearing a colorful array of T-ADAPT and Not Dead Yet T-shirts marched single filed up the steep hill of State Street, to their destination -- a side entrance of the hotel. Bruce Darling and Steven Drake led the way, as the group marched silently into the Crowne Plaza Hotel.

Disability advocates such as Christie Willson and Frank Johnson, entered the building with determination, walking briskly in a tight formation, down a long hallway, past the conference registration tables, and right into Ballroom A. The group strode single file in front of the conference presenters, podium, and 6’ x 6’ Power Point projector screens, filling the front of the hall. At first conference attendees looked shocked. The group pulled out protest signs with slogans such as “Not Dead Yet”, “Democracy not Dictatorship”, “ADAPT” and perhaps most importantly “Nothing About Us Without Us!” Chris Hilderbrant led the group in a loud chant “NOTHING!! About us… without us!” The group chanted as loud as they possibly could.

The conference had not yet begun. While Frank Johnson was leading his section in a loud, spirited chant, Paul Recor and a few other advocates went through the conference room, to pass out flyers about the lack of involvement of the disability community in a conference about bioethics issues that so critically affect our community.

Half of the conference attendees seemed confused, leaving the room at a brisk pace. The other half of participants seemed unsure of whether to take the flyers, but the majority took them, to read and discuss with their neighboring conference attendees. Others approached the group to ask questions and find out more about the issues around disability rights. A few took out cell phones and began taking pictures and video streaming the events as they unfolded!

At one point a receptionist from the Crown Plaza tried to find the leader of the group in order to force the group out, but the advocates stayed focused and strong. Bruce Darling, Shelly Perrin Mike Volkman and Stephen Drake approached conference organizers, and became the negotiating team with the conference organizers.

As a result of their discussions, Stephen Drake was able to speak in front of the fully attending conference. As Bruce put it, “He actually became the Keynote Speaker for the conference!” Stephen spoke of the mission of NDY and how people with disabilities have been dismissed by both sides of the “cultural war”. He gave personal examples of how people with disabilities are critically affected by bioethics issues, including the story of Rochesterian Joe Bonomo and the difficulty he had getting his own doctor to serve him at home after he had his series of strokes.

Stephen also shared other examples including the story of a 4 year-old girl with autism who was murdered by her mother. Instead of sympathy being garnered for the murdered girl, the media empathized with the mother whom killed her! That is why the disability community needs to have its voice heard at the bioethics table.

When Stephen ended his speech, he was met by powerful applause followed by contemplative silence. The activists slowly made their way outside as the conference recessed for a short period. Stephen Drake was invited to stay but elected to leave with rest of the group. A numbers of attendees came forward express their support of the action; other conference attendees asked group members more about why we were here. We left them with flyers and information and website links that would helpful be insightful.

Q: So, what does a group of disability rights advocates do in Albany, New York when it is only 2:30 PM and the bus home does not leave until 6 o’clock?

A: Go somewhere else to advocate!

After success at the Bioethics Conference, the group decided to pay a visit to Bob Sherman, from the Long Term Care Restructuring project, who is working on a “mega-waiver”. Chris Hilderbrant and the crew walked the distance from the Crowne Plaza past the Capital, up the mighty hill, to 99 Washington Avenue, also known as One Commerce Plaza. The crew entered the plaza and, in small groups, went up to the eighth floor.

We were headed to the office because just the day before Bruce had participated in an Advisory Group meeting about the waiver. Bruce was deeply concerned because it was clear that the waiver was being designed to meet the needs of various groups, like the counties and provider agencies, but that the needs of consumers, particularly those with the most significant disabilities, were being overlooked.

Once situated, Bruce called Bob Sherman, the head of the Long Term Restructuring initiative to see if he would come out and talk to the group. Bob asked how many people were with Bruce. Bruce replied, “about 40.” Bob retorted, “Really Bruce, how many people are there?” Bruce held the phone out and asked everyone to say “hi” to Bob. The crowd shouted back “Hi, Bob!”

Bob told Bruce he would be right out.

When he came out his office, you could see the awe in his face gathering us all in, and having to listen real stories about the importance of personal care. Bob Sherman promised the group that if we scheduled a formal meeting, he would attend to listen even more.

To finish off their trip to One Commerce Plaza, the gang went down the hall to visit Melanie Shaw, the Executive Director of the New York Association of Independent Living. The group thanked Melanie and her assistant Nell Brady for their support and the good work they do.

The group also reminded Melanie that the Center for Disability Rights was the only Center NOT to get any of the $1 million in state independent living funds. In fact CDR get NO state funding. Frank told Melanie, “We’re getting hammered. It’s just wrong.” She pointed out that the Association supported CDR getting funds and agreed to continue to work on it!

The group made their way back to the lobby and was able to get snacks and drinks from a near-by market and Dunkin Donuts. The bus finally came about and the Rochester crew was on their way home. We arrived in Rochester at an early 8:30 PM.

It was a LONG day for Rochester activists, but it was very successful! It demonstrated the power people can have if they want to make their voices heard. By the way, that’s “power” spelled A - D - A - P - T!

No comments: