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Shifting Views of Independence
Editor's Note: This article is reprinted from the Braille Forum, Volume XLIII, No. 1, July-August, 2004.
When we meet young blind people struggling for a cohesive self-identity, the term "independence" is usually a major theme in the discourse. For them, the "I Can Do It Myself" theme is a dominant mantra. For us, on the other hand, our independence mantra is: "I can marshall the resources to get it done." This shift is the result of the aging process and our move from New York City to Fresno, Calif.
After our marriage and relocation to Fresno in 1987, we traded a frenetic urban lifestyle for a laid-back small California city. In New York, Ed travelled by subway to his job as professor at Baruch College in Manhattan, while Toni took the Long Island Railroad to her job as rehabilitation counsellor at Kings Park Psychiatric Center. With rides or carpooling an impossible dream, our travel needs were met through the use of public transportation. Over the years we spent countless hours waiting for, walking to and travelling on buses, subways and trains in the heat of summer, the cold of winter, rain and snow. During rush-hour commutes, standing was the norm, and fellow passengers were often unhelpful and unfriendly. Although the New York transportation system had its drawbacks, the availability of 24-hour service seven days a week was a tremendous attraction. We were concerned that the move to Fresno would mean our ability to travel independently would be diminished by a less than adequate bus system.
In New York, blindness-related needs, such as reading services, were available at agencies for the blind if one was willing and able to travel to the site where the services were provided. Getting a haircut, visiting a doctor or veterinarian, having a small appliance repaired, shopping for groceries, going to a restaurant or theatre production were activities we could participate in independently with a minimum of assistance from others. However, the cost could be measured in terms of stress, time and inconvenience. In contrast, these same activities could be accomplished in Fresno with a minimum of stress, time and inconvenience, but with the need for greater assistance.
When we first moved to this central California community, following our former pattern of dependence on public transportation, we familiarized ourselves with and used the local bus system. In fact, the selection of an apartment to rent was based in part on its proximity to a bus stop. After 7 p.m. when service stopped, we took taxis to and from our destinations. As our social network expanded, acquaintances, neighbours and friends began volunteering to drive and assist us in a variety of ways.
In those early Fresno days, we were constantly amazed at people's willingness to put themselves out for our benefit. When we could not arrange for a volunteer driver to get us to the hairdresser, she offered to come to our home to cut our hair. While shopping with our scheduled volunteer driver in a local pet supply store, we were disappointed our preferred brand of cat food would not come in until the next day. Although the store did not have a delivery policy, a clerk offered to bring it to us when it came in. At a sporting goods store where Toni was shopping for sneakers, the manager, realizing she would have to get a ride back to the store when the special order arrived, volunteered to deliver the shoes when he received them. Recognizing the benefits to be derived from these unexpected offers of assistance, we began organizing a core of regular and scheduled volunteers. Among these volunteers were several members of the North Fresno Lions Club.
Initially, the two of us had very different reactions to this shift in lifestyle. Ed began to feel guilty while Toni revelled in it. Always believing herself to be a princess, Toni could now change her fantasies into reality! Ed, blind for less than a decade, felt his independence was being eroded. For him, partnership with a guide dog was an overt manifestation of disability status. In New York he valued his ability to take the subway to and from work, pick up Chinese food on the way home and drop in on the neighbourhood shoemaker.
Toni's response to our new lifestyle was very different. Born blind, Toni had many more years of dealing with the obstacles associated with blindness. By most standards, she was considered a competent and independent person. Since early childhood, teachers, rehabilitation and summer camp counsellors had emphasized the importance of self-reliance whenever possible. To maintain her achieved status as super-blink, she often struggled to accomplish things which could more easily be done with the help of others. Toni's image of herself as an independent traveller was intrinsically tied to her partnership with a guide dog. In fact, our commitment to partnership with guide dogs was a major factor in bringing us together.
One of the consequences of our move has been the re-thinking of what constitutes independence. In New York, independence meant doing things on our own. In Fresno, independence means selecting and supervising the services of volunteers to enhance our quality of life. By having the choice of when, where and how to be assisted, we have gained greater control and improved the comfort level of our lives.
To illustrate the impact of this transition, we can look at the example of reading services. Like many other blind New Yorkers, we received reading services at the Lighthouse. This involved travelling for over an hour in all kinds of weather to the agency and accepting readers selected by the staff. They were scheduled in two-hour segments and a great deal of time was wasted if a scheduled reader failed to keep his/her appointment. In contrast, we now interview and select the volunteer readers most suited to our needs and schedule them in time slots most convenient for us. Since they are reading to us in our home, we do not have to factor in travel time and, if a reader cancels, other activities can be readily substituted.
As inveterate theatre lovers, we could travel to Broadway shows without depending on a lift from a friend. However, we had to rely on strangers sitting near us to read the program, describe the stage setting and fill in information about non-verbal action taking place on stage. Here in Fresno where there is no public transportation in the evening, we choose to be driven to the theatre by a volunteer. This has the added advantage of providing descriptive information previously sought from strangers. As part of a reciprocal arrangement, we pay for the ticket of the driver.
Food shopping in New York was a nightmare. Although we could walk or take public transportation to a food market, getting competent sighted help in the store was next to impossible. Whatever food was bought had to be lugged home in a backpack or shopping cart. Although our shopping schedule in Fresno is somewhat dependent on the availability of a volunteer driver, competent customer service clerks in stores are always ready to assist. We have the added advantage of not having to cope with heavy, unwieldy packages.
As we reflect upon the changes that have taken place in our lives, several interrelated themes emerge. It is said one cannot truly experience ecstasy unless one has experienced sorrow. Perhaps it is equally true that one cannot comfortably rely on others without first having experienced the "I can do it myself" stage. In our evolving view, independence is not measured by how much we can do for ourselves, but by how clearly we can articulate our needs and organize the resources to attain them. From this perspective, independence is taking charge of our lives and controlling the resources available to achieve a quality lifestyle.
Toni and Ed Eames can be contacted at 3376 North Wishon, Fresno, CA 93704-4832; phone (209) 224-0544.