Sunday, July 29, 2012

Troubles, Experiences and Expectations, by Alec Frazier

Hello out there! The reason why you have not heard from me for quite some time is that six weeks ago, I had a stroke. It was brought on mostly by high blood pressure, although I also learned that I have my mother’s condition of arteriovenous malformations, or AVMs. I have needed to change my diet to eliminate foods with high salt, high cholesterol, and drinks with caffeine. I also have added several medications and new times for my medications and take blood pressure regularly.

The silver lining is that we caught the stroke in progress, and I have had very good treatment thanks to SUNY Upstate Medical Hospital at Syracuse. None of my body has been paralyzed, and although I have a little bit more recovery left before me, I will largely be returning to normal, aside from the changes listed in the previous paragraph. However, I will be needing two noninvasive brain surgery operations, the first involving gluing one AVM through a catheter, and the second one involving sealing another AVM with gamma radiation from outside my body.

Inside the Museum of disABILITY History

In the meantime, I have had many positive experiences. The Museum of disABILITY History here in Buffalo had their First Annual Membership Gala, with extra archival items on display and many important people to network with. I met with James M. Boles, Ed.D., the President and Chief Executive Officer of People Inc., the organization that runs the museum and is also the biggest disability assistance agency in Western New York, and told him about my connections with the American Association of People with Disabilities (AAPD), the nation’s largest agency by and for people with disabilities. It is my hope to get them connected so that they can share ideas and also possibly physical resources, mainly in terms of objects for display in the museum.

Emil Novak, Sr. Salutes at the Queen City Bookstore

In addition, I have had a fabulous time getting to know the Queen City Bookstore, the local comic bookstore in Buffalo run by Emil Novak, Sr. and his friends and family. It is a truly awesome store to have right down the street from where I am living with wonderful people and wonderful events, such as their garage sale this weekend with wonderfully low prices throughout the store. They have comic books, trade paperbacks, toys, T-shirts, much other apparel, but most importantly, friendly people who work and go there.

The Hon. Ambassador Jean Kennedy Smith

I have largely finished two of my disability advocacy campaigns. The first one is my work consulting on the youth population for VSA, the international organization on arts and disability, which will help them revitalize their policy and marketing. This job was born out of a meeting myself and select others had with JFK’s sister, the Hon. Ambassador Jean Kennedy Smith, founder of the VSA. At the end of our meeting, I gave her a complement that must have been rather strong because she gave me a standing ovation.

The second disability advocacy campaign with which I am largely finished is the DJF-ASAN Empowering Autistic Leaders Project. This project, courtesy of the Autistic Self Advocacy Network (ASAN), entails writing a comprehensive manual for people with all disabilities by people with disabilities for entering college. It is vital that people with disabilities have a resource which to turn when planning to enter higher education.

On August 12, I am leaving for Baltimore to take part in the Autism Campus Inclusion (ACI) Summer Training, also courtesy of the Autistic Self Advocacy Network (ASAN). I have already been in contact with a number of the members via a Google group, and it seems like the attending population, while diverse, is very motivated and productive. I look forward to the training we will get from this seminar, and what we can do with that training.

The week after that comes school, where I will be taking Magic, Witchcraft, and Sorcery, Intro to Comparative Politics, and Sociology of Gender. In addition, I will be a staff photographer for The Spectrum, UB’s school newspaper. While I am doing these things, I will also be continuing my role on the Diversity in Disability Planning Committee, working hard to put on UB’s second annual Diversity in Disability Symposium.

I look forward to what the new school year will bring, while being ever vigilant about my well-being and that of others.

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