By Jesse Marx
By Chris Parker
By Jake Rossen
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By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
In every e-mail she writes, Johana Schwartz signs off with the same quote from James Joyce. They're galvanizing words, epiphanic really--but more on that later. The Irish writer has been a guiding light to the 24-year-old native of Petaluma, California, since Schwartz discovered the sweep of Ulysses in high school. It set her on a path toward all things Irish, which has included Irish music (especially County Galway roots-rockers the Saw Doctors) and stints at Trinity College in Dublin and Stanford University, which graduated her with an English/modern Irish literature degree. Schwartz's green streak will take her to her first Irish Fair in St. Paul this weekend.
Schwartz has cerebral palsy. She can spit and belt her way through a conversation, and the aides at her assisted-living home in Crystal can help with interpretation. But her spirit is most vividly encapsulated by the Joyce quote, which she types out with the assistance of a communication device connected to her forehead. She points it at a keyboard affixed to her Power Chair, and words slowly come forth.
"It's a congenital condition, so I've never known anything else," she writes. "I moved to Minnesota for its superb health care and services for folks with disabilities, and for the Irish studies program at St. Thomas and the like. California doesn't have an Irish Fair. Minnesota has programs that allow me to live more independently, like the Courage Center in Golden Valley. I lived in the residence there from September '04 until May '05 and availed myself of its rehabilitation curriculum. Now I live in a private residence in Crystal with three other young adults with disabilities. We have a crew of staff that comes in to help us throughout the day. We all live active lives in the community."
Johana doesn't walk. She spends her days in her motorized wheelchair, and labors heavily to do simple things such as move a mouse on a computer pad. Or speak. At times, after she has drooled and convulsed her way through a conversation, she will crumple in her chair and grow quiet, exhausted from the effort of trying to be understood.
"Crystal has no sidewalks where I live but my housemates and I can be seen taking walks around the neighborhood and to the Kwiki Mart down the block," she writes. "The clerks there are awesome. They will help us round up our merchandise and check out. The neighbors all embrace us and even the animals live in harmony. The dogs leave the wild rabbits alone. I know all the dogs and their owners. Midwestern summer nights also attracted me to Minnesota. Last night after dark, I went out in my Power Chair and sat on my porch and read my Irish novel and listened to my Irish music, both of which are on my communication device.
"The device illuminates the background of the text for me so that I can read in the warm humid night. This is my American dream come true. I can finally navigate through my books independently after 20 years of waiting for someone to turn the pages. Minnesota is warm at night without that constant coastal fog that kept me inside in Petaluma."
Schwartz's room is tidy. The walls are decorated with a map of Ireland, photos of Irish authors, poets, and musicians, a crayon-colored leprechaun, and St. Patrick's Day cards. Her bookshelf is 90 percent Irish--Yeats and Joyce dominate--as is her CD collection.
"The Irish sure put up with a lot over the years," she says. "Their displacement led to a huge and inspired canon, which highlights their own identity."
Though she doesn't talk about it, at least not with a visitor, Schwartz herself has put up with a lot. In almost everything she does, she needs assistance, and this dependence chafes against her naturally independent spirit. What she will say--and what she did say, over the course of two weeks of e-mails--is that people don't treat her poorly so much as they treat her as if she were invisible.
"Sometimes people limit me with their attitudes," she writes. "They make assumptions that since I have a speech impairment, I have nothing to say. However, on the contrary, for a class at Stanford I wrote a 61-page biography of Father Hugh Quigley, which is now on the shelf of an Irish library. Still, some people won't give me the chance to express myself and consequently deny me opportunities.
"I am going to County Clare in the fall to see the book and to see Quigley's property. I want to write the epic fictional version of his life in the spirit of Captains and Kings. Quigley has lived everywhere and whenever I travel, I try to visit the site of his residence, to gather material for my novel. I need to see his birthplace, and consider it research."
While Schwartz wants to be a novelist, for the moment she works 16 hours a week as project manager for Writer's Brigade, a program that offers work experience to others who rely on augmentative and alternative communication. It teaches them the skills necessary to become technical writers. Her e-mail inbox is filled with missives from disabled writers looking for advice, and from her boss, family members, and friends. Schwartz's messages tend to be lucid and cheerful, and she often signs off with a "sláinte," which is the Irish salutation for, "to your good health."