Wednesday, October 26, 2005

sharing some of my news

Dear Readers,

I have so much to tell you about the past few days. I've hardly have a chance to breath let alone keep in touch with loved ones. To a certain extent I've intentionally stayed busy - and succeeded so far in staving off loneliness while my partner Carla Keirns is working hard in Botswana [see her news here]. As you will see from reading this message, it has been an eventful week!

The same Wednesday morning that Carla flew out of Philadelphia on South African Airlines, Carol Marfisi and I headed up to New York City for the "Introduction to Disability Studies" presentation at Columbia University. It was a fun day where we had the opportunity to interact with Disability Studies scholars Simi Linton and Kim Reid, introducing our new student Scott Gordon to their perspectives. We also tried to advertise our new Graduate Student listserv amongst the audience, but found that besides Scott and Simi Linton's assistants, there weren't any graduate students in attendance. Our intention to head down to hear Richard Thornburgh's speech at the New York Law School that evening was foiled, as I didn't have a sufficiently detailed map, and the person directing our driver hadn't driven in the city for perhaps 20 years. It ended up as a comical loop trip around the lower tip of Manhattan before we took the decisive step of driving back home. Carol's assistant Maggie and our new student Scott were in a good frame of mind and helped to make the trip more enjoyable.

Friday evening we had another New York City adventure. Through one of my blog subscriptions [Philly Future], I had read about a young artist with multiple disabilities who also happened to be an incredibly soulful jazz singer. I showed the artist's website to my colleague and disability culture fan Carol Marfisi, and we decided to check out her next show. It so happened that this show was scheduled for Friday evening at the Staten Island Club for the Deaf. So off we drove - Carol, Mike and Carol's Liberian personal assistant, Matina - to listen to a jazz singer perform at a Deaf club. How disability multi-cultural could one get?

The club itself was a blank storefront set back from the street, painted grey with 'SICD' scrawled in tape on the window, and a ripped up and barricaded sidewalk in front. You certainly wouldn't go through that hazed glass door if you didn't know the address ahead of time. It was raining, so I headed in on my own to check out the scene. The gentleman at the door seemed friendly enough and didn't speak or even respond when I said "Hello." We gestured to one another as I checked out the bar and the side room with seating and a makeshift stage under a bare light bulb. The flyers for the show indicated three artists for a 7$ package rate, so I paid for my ticket and went back to escort Carol and Matina. Matina in particular had no idea what to expect, only learning 20 minutes earlier about the nature of this concert and professing that she didn't like jazz or blues music.

We camped out in the front row - I sat on the right-hand side of the aisle, and Carol sat on the left-hand side. To my right were several young women and men who appeared to be using signs in addition to their voices to communicate. They seemed like typical young adults. To Carol's left was a young woman wearing large dark sunglasses, oversized tan beret, and a large scarf. This fashionably dressed woman chatted amiably with Carol about the scene. Carol didn't recognize Melody Gardot right away, but I had seen her picture on the website. On the wall to the right was a memorial to the great teams of Deaf baseball players sponsored by the Staten Island Club for the Deaf. Carol wanted me to take a picture of the wall on her cameraphone. I felt like I should check with Melody first. Her website mentions that she prefers that audiences refrain from taking flash pictures, which can trigger her neurological symptoms. Since her accident, getting hit by a car while riding her bike a year or two ago, Melody has been struggling with debilitating pain and auras. She walks now with a cane, even though she is barely 20 years old. Anyway, as I mentioned Melody's name, she perked up, and it finally dawned on Carol who she was sitting next to. The friendship blossomed from there - Melody introduced us to her mom who was sitting against the wall to the left, and we ended up taking several pictures (without flash) of the entire group. One of these pictures, and Carol's version of this story, can be found below.

The Staten Island Club for the Deaf has served as gathering spot for NY Deaf community for over 50 years. In March 2005, SICD opened its doors to something new; a interpreted live musical performance by singer/songwriter Christian Davis. That night had proved very successful, bringing 80 hearing and 60 Deaf people together to enjoy one event. This marked the second live musical performance at the club. The performing artists, Christian Davis, Christina LaRocca and Melody Gardot, coordinated with selected sign language interpreters, meeting earlier in the day to rehearse and share song lyrics. Christian Davis knew enough signs to introduce the songs himself. With his throbbing bass guitar, we could feel the vibrations through the floor. Many of the songs were accompanied by Sign Language interpretation. The audience cheered for both the performers and the interpreters.

Melody walked up to the stage gingerly and set up for what turned out to be a stellar set, including 'Wicked Ride,' her wittiest and most obviously radio-friendly song. Explaining that she was feeling a little dizzy/woozy that evening, she said "good night" after that set, and we left with her to get back to Philadelphia. I got back home that night at 1:00 am with a smile on my face.

The following morning I pulled myself out of bed and attended the symposium End-of-Life Decision Making: The Right to Die? organized by graduate students from the Temple University Law School. Some of the heavy hitters from the arenas of law and ethics, the independent living movement, and the 'death with dignity' movement were there to present. The presentation, appropriately enough, was held in an old chapel that had been remodeled into a meeting space, and the audience was largely lawyers seeking professional development credit. The papers and discussions were scholarly and thought-provoking. Receiving particular scrutiny were Oregon's approach to physician-assisted dying, and the politics of the Terri Schiavo case. It was a good preparation next week's focus group. Carol Marfisi and I are heading up to Harrisburg to meet with a number of stakeholders, family members and people with disabilities who are well-known in Harrisburg policy circles. Last June the Pennsylvania Department on Aging held a conference about improving care of Pennsylvanians experiencing terminal illness and increasing public awareness of important end-of-life decisions and safeguards. We will be helping to draw out the perspectives of focus group participants on difficult ethic case studies, in the hopes of showing how these end of life discussions impinge on the mission of organizations concerned with protection and advocacy for
Pennsylvanians with disabilities.

Yesterday (Tuesday) was particularly busy. It was the day of the Ramadan Fast-a-Thon, sponsored by the Temple University Muslim Student Association. This is an annual fundraiser, where students and staff at Temple University are invited to join in the Ramadan fast, if only for one day. The president of the MSA Omar Arshad came to recruit students from my undergraduate 'Schooling and Development in Third World Societies' class. Several volunteered to sign the pledge, requiring a daylong fast. No food, no water, to consumption through the mouth of any kind. In addition, we are to focus on maintaining clean thoughts and focus on showing compassion toward others - no verbal lashing out, backbiting, etc. After fasting from 6:00 am to 6:00 pm, all are invited to join the campus' Muslim students at Mitten Hall's great court. We break the fast with dates and bread and then share a feast prepared by the Muslim students.

I have been looking forward to this day, and ate a full meal the night before. Unfortunately I woke up even earlier than I had intended that morning, at 3:30 am, with a gurgling tummy! Well, at least I had plenty of time to down my breakfast of Cream of Wheat fortified with fruit before the 6:00 am sunrise. At the 11:40 - 1:00 class session that morning, several students told me that they were indeed fasting. Stacey Brown was experiencing cramps, but said she would make it. Anwar Jones forgot about the fast, but hadn't had his breakfast anyway that morning. He would have qualified except for the fact that he was chewing a stick of gum. That evening Alicia showed up to join us. She had overslept that morning and missed breakfast, but didn't seem too much worse for wear. After breaking the fast, the Muslim students engaged in their evening prayers - non Muslims watched with interest - before we all formed lines (sex segregated, I might add) and filled our plated at the buffet. While eating the great Middle Eastern food, we listened to distinguished speakers explained the importance of fasting to Muslims, and the purpose of this event. Philadelphia businesses sponsored the fasting students. The funds collected from these businesses, and from the collection plate passed at the banquet, were given to the Kashmir Disaster and Development Fund, a new non-profit created in the wake of the Pakistan earthquake.

I need to get back to my grading, but thought you might enjoy hearing about one of the more interesting weeks I can remember. Or maybe others have been similarly memorable, but I haven't had cause to write them down. Mike

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