I had the pleasure of photographing Rosemarie Kasper at HLAA Convention 2012 in Providence, Rhode Island. Read her article below from the May/June 2013 issue of Hearing Loss Magazine to see why I find her to be such an inspiration!
Photo © Cindy Dyer. All rights reserved.
Hearing Loss: My “Secondary” Disability by Rosemarie Kasper
For half my life, navigating the barrier filled world in a wheelchair was a major struggle. My loving parents always wanted the best for me but worried endlessly about my safety.
The major characteristic of Osteogenesis Imperfecta (OI) is fragile bones, bones that can sometimes break even without moving, especially during infancy and youth. Related symptoms include respiratory problems, scoliosis, short stature, weak muscles, and brittle teeth. Not long ago it was determined that more than 50 percent of individuals with OI experience hearing loss.
Due to inaccessible schools and the absence of special transportation, a public school teacher came to my home for one hour each school day—after classes were finished. Although I was frustrated at the separation from school and classmates, I looked forward to attending a local college and preparing for a career.
This was not to be. As an interviewer at a local college explained, “We have too many stairs” to accept students in wheelchairs. It was not until 1968, 13 years after high school, when my college dream became a reality. I was so overjoyed to attend new and welcoming Bergen Community College that instead of trying to hasten my graduation, I wanted to delay it!
After completing my associate’s degree at Bergen Community College, I was accepted at the four-year, stairfilled Fairleigh Dickinson University in Teaneck, New Jersey, then stayed on for my master’s degree in counseling. All courses were taken at night and I continued to work full time during the day. As my college credits accumulated, my position with the Division of Vocational Rehabilitation changed from clerical to counseling.
Through the years the problem of inaccessible facilities gradually lessened as the equal rights of people with disabilities were enhanced through legislation. My peers and I, with supporting human service agencies, joined together in advocating for our cause. As a result in my 20s I enjoyed an active life including a secretarial job, membership in clubs, and community activities. The future looked bright.
Hearing Loss Enters the Picture
In my early teens, my parents became concerned about the volume I preferred on radio and TV but attributed this to a fondness for loud sounds. Tests ultimately proved otherwise, and at 18, I received my first hearing aid. It was upgraded periodically in accord with my needs and advances in technology. I also learned the value of binaural aids and regretted not trying them sooner.
Various assistive listening devices (ALD) joined the group of communication tools as needed. Presently, my captioned phone and alerting system are especially valued. But captioning for TV? With the volume turned on high, I felt that was not needed.
One memorable evening I watched a mystery show in my room while my parents watched a different program on another TV. When the mystery ended, I stared blankly at the screen—I had no idea what had happened! And there was no one I could ask. The next day, I ordered a caption decoder box.
On the Fourth of July in 1985 the unthinkable happened: I lost total hearing in my right ear. This was a spontaneous medical occurrence and drastically reduced my communication ability. With the encouragement of my friend and companion, Jo Ann, I enrolled in a lip reading course, and we then both took lessons in sign language. Although nothing helped significantly, basic knowledge of sign language has been useful in certain circumstances. Children are often fascinated by sign language and learn it quickly. An intro course for the early grades might prove valuable.
After expending time and energy trying to convince people that a small person in a wheelchair can function independently, my difficulty in communication has become very frustrating. Servers in restaurants, salespeople, clerks at ticket counters, persons attending meetings—all frequently present communication challenges that hinder independence.
Certain situations are especially frustrating. In a vehicle it is virtually impossible to lip read, and my hearing—even when aided—is useless without this assist. It is also nearly impossible to talk with anyone who is pushing my wheelchair. In small groups every effort will be made to seat me where no one will stumble over my wheels, but it is rarely possible to face everyone.
Roller Coaster Ride with Captions
I have learned to expect far more surprises with a hearing loss than with a wheelchair. If a building is wheelchair-friendly there rarely are difficulties. With a severe-to-profound hearing loss, the absence or malfunction of an assistive listening system can be a major problem. There also seems to be an almost universal belief that people with hearing loss can benefit from sign language interpreters. This depends on various factors, and many late-deafened persons such as myself lack all but minimal skills in sign. I am everlastingly grateful for the availability of captions and this is especially true at HLAA Conventions!
However, movie captioning was not initially helpful to me. With Rear Window captions, the device is placed in a cup holder next to the patron’s seat, but a wheelchair has no holder. My alternative was to hold the device in my hand throughout the movie, which was cumbersome and tiring. However, my own advocacy and especially that of my friend, Arlene Romoff, a crusader in theater access for people with hearing loss, helped to alleviate this problem and a special holder was developed for wheelchairs.
I was thrilled with the advent of captioned live theater but this joy was short lived as the captions often are not readable from wheelchair locations. To assure safety, and as mandated by the fire department, wheelchairs are placed in a specific area close to an exit. One evening when it was impossible to read the captions, theater personnel led our small group to three different areas, each with a progressively worse view. We missed a large part of the first act before reaching a place where the captions were marginally readable. I quickly learned to contact the theater before ordering tickets to a captioned show.
He Did a Great Job
Early in my adjustment to hearing loss I was fortunate to learn about the local New Jersey HLAA Chapter, then known as SHHH. Although I now have a large number of role models, Jack Mulligan, the long-time president, was my first and he similarly inspired many others. He chaired 11 meetings each year, many with interesting speakers. He also sent out a newsletter and added a personal note on many. A retired gentleman, he spent his “spare time” volunteering at our local hospital, and appeared in a video featuring their services for persons with hearing loss.
Jack unfailingly would tell all who helped: “You did a good job!” In 1994, he was honored with the well-deserved Spirit of SHHH Award. Our committee has tried to follow in his footsteps, but he is a tough act to follow.
Even before my hearing loss became so severe, I sensed how much greater its impact would be on my life than the wheelchair now was. Friends easily learned to push my wheelchair and realized the type of help I needed in certain situations. They willingly folded and lifted the wheelchair into their cars and some even carried me up and down steps.
With my hearing loss, it was more problematic. People tended to overlook this invisible condition and did not know how to deal with it. Everyone’s time and patience in repeating a conversation are limited. Today, a dictation app is available for iPads and iPhones but this is appropriate only in certain circumstances. As they say, it’s a different ball game.
A year ago a friend who is a CART reporter expressed her willingness to caption Mass at my church. It seemed a gift from heaven, but I was unsure that it could be set up conveniently. I was wrong, and my pastor was willing and even eager to offer this service. Since then, two Masses each month are captioned and while not many worshippers with hearing loss appear to be availing themselves of this service, those of us who do find it helpful.
On a number of occasions I have been invited to give presentations to classes of medical students. Often schools and universities will seek out speakers, preferring persons who are experiencing the problem. Afterwards, students sometimes commented: “The textbooks never talked about that!”
Public hearings afford the opportunity to testify on various issues including transportation needs, communication issues, and more. It is a valuable opportunity both to provide input and to promote awareness. Overall, coping with hearing loss in addition to using a wheelchair has impressed on me that the most formidable problems might not be visible. Staying at home or pretending to understand when we don’t will not help us or future generations, and joining with others in a cause—such as HLAA demonstrates again and again—can be both rewarding and the key to success.
Rosemarie Kasper graduated with a master’s degree in counseling from Fairleigh Dickinson University and worked for almost 35 years with the New Jersey Division of Vocational Rehabilitation in Hackensack. At retirement she was a senior rehabilitation counselor. Rosemarie also worked for four semesters as an adjunct instructor at Bergen Community College in the Department of Continuing Education. In addition, she served as the editor of Breakthrough, the newsletter of the Osteogenesis Imperfecta Foundation (OIF) for 10 years. Rosemarie has been actively involved in OIF for many years, served on the national Board, and co-founded the local New Jersey Area OI Support Group 20 years ago. She remains its co-chair. In addition, she currently is president of the HLAA Bergen County New Jersey Chapter. Her top interests are travel and writing. With close friend Jo Ann, she has traveled to 39 states as well as Canada, the British Isles, and Bermuda. She has published close to 100 articles in magazines and newspapers, most on her travels as well as how-to pieces. Rosemarie can be reached at email@example.com.
What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta (OI), a genetic disorder, affects a person from birth throughout his or her life. It is caused by an error—a mutation—on a gene that affects the body’s production of collagen found in bones and other tissues. OI is variable having eight different types ranging from lethal to mild. The number of Americans affected by OI is estimated to be 25,000-50,000. For more information about OI, go to www.oif.org, the website for the Osteogenesis Imperfecta Foundation.