Future Reflections Special Issue: Low Vision and Blindness 2005
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by Kathy Kennedy
Editor’s Note: Getting training in blindness skills seems the logical, sensible thing to do if one is newly blinded. But it isn’t always that straightforward. Vision loss often happens slowly and erratically over months or even years. When, in that process, does one know that “now” is the time to seek training? After the decision to seek training is made, a whole new set of questions arises. What type of training or program is best? Does one have to go to the program offered by the rehabilitation counselor? Are programs really that different? Should a graduating high school student attend an independent living rehabilitation program for the blind before going to college or a vocational school? There is no one right answer for everyone, but the experiences of other students can be useful and instructive. The following article (which was published in the NFB Buckeye Bulletin, a publication of the National Federation of the Blind of Ohio, and later in Future Reflections) explores those questions. The author, Kathy Kennedy, is the mother of Jennifer Kennedy, who is a student leader in the NFB of Ohio and a 2001 NFB Scholarship winner. Here is what her mother has to say about Jen’s rehabilitation training center experience:
What you are trying to tell me, Doctor, is that “Jennifer is now legally blind and progressing towards total loss of vision.” How difficult those words were for a mother to embrace. The only thing that seemed real to me at the time was fear coupled with tremendous waves of grief. After all, this was not what I envisioned when the delivering doctor had pronounced her healthy just thirteen years before this devastating news was dropped like a ton of bricks on our family. “It isn’t supposed to be like this, God!” I cried out in the privacy of my room that night with tears streaming down my face and my fists pounding. I thought, she has the ability, spirit, and determination to be a leader and excel in life. Without sight she’ll lose her independence, have to settle for less of a career than she is mentally capable of, and forfeit the right to live life fully. I could not answer the simplest questions regarding how blind people function in a sighted world. I’ve never felt so helpless, hopeless, and empty.
That was over seven years ago. During these years Jen has lost more field vision, light perception, and visual acuity. With training funded by the Bureau of Services for the Visually Impaired (BSVI), she began using a cane. She was also introduced to Braille and was given some adaptive equipment. She got a CCTV [closed circuit television], a computer equipped with JAWS, magnifiers, etc. Even with this equipment in place, Jen continued to make demands on her eyes. She was in pain both physically and mentally. Blindness began taking a toll on her. Her self-confidence and ability to function independently were slipping away as her vision diminished.
During the spring of her freshman year in college Jennifer bottomed out. Navigating the campus was difficult. Her eyes were no longer trustworthy, and the more she used them the more pain and frustration she experienced. She felt isolated in her journey into blindness, and she knew it was time to get help. “It’s time to head for the Louisiana Center for the Blind (LCB), Mom,” the desperate voice on the phone cried out. After a call to her BSVI counselor and a visit to her academic advisor, she exited the university and returned home.
Jen had done her homework. She had already been to the Cleveland Sight Center and recognized that they had nothing more to offer her. She researched the programs of other rehabilitation facilities in the state and talked to consumers of those programs. None were as thorough and exhaustive as necessary to make blindness skills second nature. Jen knew she had to be in a program that forced her to deal with blindness during every waking hour. Moreover, it was not enough to learn the skills of blindness; she had to develop a positive philosophy about blindness. She concluded that this could only be done if she was surrounded by people who believed in the inherent normality of blind people. After much investigation, consideration, soul-searching, and agonizing about going so far away from home, Jen determined that she needed the rigorous training offered by the Louisiana Center for the Blind. She had done conscientious research and had carefully compared the confidence and skills of LCB graduates against the attitudes and abilities of Ohio residents who had completed the adult training programs offered by local agencies, and she knew that she was making an informed choice about the services she needed and the best provider to deliver them. She assumed that the funding she needed would be approved quickly by BSVI, but two weeks later came the reply--funding to go out of state for services denied.
She spent the next six months at home, frustrated, depressed, and filled with anxiety. It was agonizing for her father and me to watch this. We knew that the adjustment to blindness was difficult enough that she didn’t need anything else added to it. We agonized about what we could do to help her get to the Louisiana Center. Unfortunately, we knew we did not have the money to help her. It was excruciating to know that help and hope were dangling just out of her reach, but we could do nothing to bring them close enough to her to make a difference.
Through Jen’s determination and the commitment, strength, and dedication of Eric Duffy and the NFB of Ohio, the decision to refuse funding was overturned. At last Jen was (as Jim Gashel said in his banquet address at the NFB of Ohio convention) beginning to move from the role of victim to victorious.
Once she arrived in Louisiana, it was difficult for us to catch Jen in her apartment in the evening. She was going roller-skating under sleepshades, rehearsing for plays, cleaning her apartment for inspection, or planning and shopping for groceries to complete her cooking requirement for graduation. She had to cook and serve two meals. One was for eight people, and the other was for forty. How many of us have ever cooked and served a meal for forty people? She phoned one night from New Orleans to tell us about sleepshade navigation in crowds. She was at Mardi Gras!
Her father and I could feel her confidence building as each month passed. She told us about all the new power tools she was using in industrial tech and about the original black-walnut jewelry box she was designing and creating for her final project. We marveled as the LCB, which had once seemed so far away from Ohio, became a part of our home through instructor-emailed pictures of Jen using the band saw, router, table saw, and other power equipment. She completed a college class at Louisiana Tech under sleepshades. She took notes with a slate and stylus. She was determined, as Dr. Fred Schroeder once wrote in the Student Slate (a publication of the National Association of Blind Students), to learn “the skills of blindness which, in the final analysis, will allow him or her to truly function on an equal footing with others.”
After eight months at the LCB, Jen invited her father and me to graduation. We were excited about making the trip. We wanted to see the facility and meet the wonderful people who were inspiring her to achieve such independence. We wanted to see where she lived and how she had learned.
She graduated this past June. The ceremony was a true celebration as each student and instructor took the opportunity to talk about Jen’s growth and reminisce about humorous things. We heard stories about the completion of her final travel requirement. She had to complete a 5.6-mile independent walk around the town of Ruston. As we listened, adults of all ages commented on what an inspiration Jen was to them, urging them to strive to be all they could and to forge ahead on days when they’d rather pull off the shades and say, “I can’t do this!” As one student commented, “This is one spunky girl.” We heard how she recaptured her life and was living it fully. The Center was filled with people--warm, supportive, and loving people--each more special than the next. Here were adults facing their fears and reclaiming their lives with the help of LCB’s outstanding instructors, all of whom either are blind or can function under sleepshades in their area of instruction.
Jen returned home for a visit, but the week after the national convention she flew to Maryland to work with the NFB Corps. She was excited to have a real job and put her skills to the test. It took no time at all to realize that we no longer had a blind daughter named Jennifer Kennedy; rather, our daughter Jennifer views her blindness as a mere inconvenience. It is easy to see why she insisted on the best rehabilitation facility available, with a program unparalleled in its field. She learned the philosophy of blindness and how to handle herself in various public situations. She learned when to accept assistance and when to insist on her right to remain independent. She travels with grace and poise gained from the travel experiences she mastered. Whether she is using public transportation, walking through airports, or exploring new cities, she strides with confidence.
The NFB program worked because she lived it twenty-four hours a day. Sometimes she spent evenings in her apartment memorizing play lines or reading sixty pages of Braille to increase her speed from twenty words per minute to ninety-five. She spent evenings with readers transcribing the autobiography of Michael J. Fox into Braille. She presented the completed book to the LCB library upon her graduation. This fulfilled her computer requirement. Graduation from LCB brought with it far more meaning than graduation from high school. Indeed this was something special she worked very hard to achieve. As part of the graduation ceremony, Pam Allen, the director of LCB, presented her with a freedom bell, complete with engraved name and graduation date. Jen rang the bell with vigor and a smile that seemed to span a mile. As parents, our hearts and eyes overflowed with tears of gratitude and pride. We also left LCB having been given a gift, freedom from the worries about blindness and the future for our daughter. Instead we were filled with the knowledge that our daughter has a future filled with promise, the skills necessary to succeed, and the NFB there to support her each step of the way.
See a list elsewhere in this issue for contact information for the Louisiana Center for the Blind and other recommended independent living rehabilitation programs for the blind.
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