phrenz 4 u

Living on Bainbridge Island is difficult for me because people here pretend to be intellectually involved, artistically involved and spiritually involved, but it is very deceptive. Anything I say now will seem either like criticism or sour grapes, and I do not mean either. I can find no truly deep intellectual, spiritual or artistic focus that will admit me, here, on Bainbridge. This is not a new experience. I have experienced this at different times of my life in different places.

There are lots of things I can do as an isolated person. I can read good books, I can write and I can exercise. I wanted to have a website to serialize my writing, to give it focus and to provide feedback that wasn’t space and time bound. I spent almost five years evaluating equipment, software,and web hosts. I looked for guided experience in accessing the right tools. Access is difficult for so many reasons: I need GUIDED EXPERIENCE – I have two service dogs now, ferry tickets to Seattle are expensive and I have no guarantee of reimbursement. Voc Rehab is correct: I have a college education. This gave me boxes to put things into, and boxes within boxes and taught me the names of boxes. The stuff that goes into the boxes is real knowledge and that has always come down to most of us through guided experience.

I won’t feel ashamed about requiring guided experience in my progress to useful activity. This is so very normal, it is beyond expression. My capacity to obtain this guided experience has changed. I am not a college student, I am a grown man at the age many men think of retiring. And I still want to find something to do with my life. My social abilities, my communicative abilities, my patience seem so fragmented. What difference would it make if I were around people like me – an ACCESS driver suggested the ARC retarded citizens group for me. I ihave known many people with downs syndrome or developmental disabilities, but I am not retarded.

Whenever my caregiver doesn’t like something I do: if I ask to have the dishes put away where I can find them, if I ask to be on time to my appointments, if I attempt to set boundaries, then she goes around Bainbridge and Poulsbo saying negative things about me. This triangulation is no different than what the Quakers would do, or my Kingston “friends”. Normally we call it gossip. I think sometimes people attempt to control each other by creating negative impressions about other people in the community. There is a difference between speaking in caring concern, and speaking in negative connotation. I don’t know my caregiver’s friends. I don’t want to be within her social circle and I don’t want to be cast in a negative light to people I do not know and have never met. My understanding is that I am entitled to feel safe in my care environment and that my care is on a confidential basis. That sense of safety is what confidentiality is about to me.

When I close my eyes and imagine where I would feel happy and safe, it is among a group of physically, intellectually and spiritually active people who live in a near subsistence environment. When I began traveling North and I was so very ill physically, and mentally, and emotionally exhausted from my accident, my surgeries and carrying the grants campaign for the children’s hospital and other projects, I imagined I was searching such a rural environment. In my mind, I imagined I was going back to my Quaker high school alma mater. Instead, I landed on Bainbridge. For a while, I was able to work on a Kingston farm when I was strong enough. I was very, very happy until the owner began to wear “the mask of someone who is familiar in all our lives”: a person who wants something from us more than they want our well being; who wants to control us for the sake of controlling more than they want to see the gifts of our contributions; who wants more and more because supposedly that is better and better – but it only feels worse and worse to the person who has become an object in relationship.

This life for which I have been looking is more than elusive, it is illusive. It is difficult to find and it is also imaginary. I think I can approximate it… like a calculus, I can come close to reach an accurate sum of the smallest parts all together; but I can not achieve an exact calculation. This is confusing: to hold a vision so strongly and clearly of who I can be, of how our world can be and to see what is and how it is; and even if I am not disappointed, everything seems so far away from me. We live in a world of material ownership: I bought my hardware… I bought my software… I bought a web host… This way, everyone is doing business well if they take my money, but give me as little as possible. Apple has a Pro Care program and they will help me get setup if I use i web (although the students on the Apple website use WordPress); Yahhoo has a setup screen in which WordPress is the only alternative web logging software (but after six hours via TTY on the telephone to Yahoo “customer service”, who repeatedly hangs up when I ask for reasonable accommodation, I am told that “this is a WordPress problem”). With a minor prestidigitation, I was easily fleeced of my money and left on my own to figure it out. This is the American way.