Navigating the Twists in the Road

Abstract

You have accessThe ASHA LeaderFeature1 Aug 2001Navigating the Twists in the RoadMembers Who Practice With Disabilities Scott H. Bjerke, Patricia De Wald, Mark Ross, and Anthony J. Caruso Scott H. Bjerke Google Scholar More articles by this author , Patricia De Wald Google Scholar More articles by this author , Mark Ross Google Scholar More articles by this author and Anthony J. Caruso Google Scholar More articles by this author https://doi.org/10.1044/leader.FTR4.06142001.np SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In The inspiring stories of the ASHA members who have contributed to this article were not intended by their authors to be inspiring—they’re simply sharing with us what they do. These are professionals who contribute to their jobs and to their society just like all other ASHA members. The inspiration, though, is certainly there for the taking. Working With a Mobility Impairment by Scott H. Bjerke I am working currently as a speech-language pathologist at Ballard Rehabilitation Hospital in San Bernardino, CA. I have been in a wheelchair for the past 21 years. My neck was broken, at the age of 19, at the seventh cervical level following a car accident. After completing my own rehabilitation at Casa Colina Rehabilitation Hospital in Pomona, I returned to college and went on to receive a master’s degree in rehabilitation counseling. I worked in a variety of rehabilitation facilities and began to specialize in adjustment and vocational counseling for persons who had sustained a traumatic brain injury. I then became very interested in cognitive functioning and deficits that affect cognition. During this time, I had the opportunity to work with Chris Hagen and Paige Shaughnessy. Both were excellent SLPs, particularly in the field of cognitive remediation. It was then that I decided that I would like to specialize in cognitive rehabilitation. I returned to graduate school and received my master’s degree in communicative disorders at the University of Redlands in California. I selected a career in speech-language pathology not only because I was interested in the field, but because I believed that the job duties could be performed from a wheelchair. I think that it is very important for persons with disabilities to explore many job opportunities. Persons with disabilities should not be discriminated against in the workplace. However, they must be able to perform the essential duties required of the job. Working on my degree in speech-language pathology from a wheelchair has been an educational experience, not only for me, but also for my colleagues and professors. While at the University of Redlands (a very old private school), I soon discovered that I could not gain access to many of the buildings on campus. There were no handicapped parking spaces or bathrooms that would enable wheelchair access. I was issued a special key to gain access to the library from the basement. In my two and a half years at the university, many changes were completed to make the school more wheelchair accessible. They even built special ramps to the amphitheater so that I could wheel on stage to receive my diploma. Working as a licensed SLP also has required environmental modifications—even at a rehabilitation hospital—including the addition of adequate parking, specific desk height adjustments, installation of magnetic doors (to hold open doors to hallways), occasional help pushing large patients in their wheelchairs to my office, and correct placement of charts at the nursing stations. I have demonstrated the ability to perform bedside swallowing evaluations, modified barium swallowing evaluations (with help to present the textures to the patients), speech-language and cognitive evaluations, and, of course, treatment with agitated individuals and pleasantly demented patients. My experience as a patient (having gone through rehabilitation myself) and now as a certified SLP has allowed me to be a role model for many of my patients. They see me as a successful professional, a husband, and father of three boys. They will often state, “If you can do it, so can I.” At least for me, success is not measured by the ability to regain the use of my legs (as seen and heard in the media), but how I perform as a person, the way I help my patients, how I function in my family, and the way I contribute to society. I am very comfortable as an SLP. I love my job and my coworkers. I have recently started to move into the teaching profession. I am an adjunct professor at Loma Linda University and at my alma mater, the University of Redlands. I give lectures and participate in the Center for Disabilities at Western University of Health Science in Pomona. I have a lot to offer the students at all universities—not only my professional expertise, but also my experience of being a successful person with a disability. Contact Scott Bjerke by email at [email protected]. Visual Impairment and the Speech-Language Pathologist by Patricia De Wald In about the second grade, seeing at night did not seem as effortless for me as it did for my neighborhood friends when we tried to catch fireflies in the dark. By fourth grade, I would cling to railings when descending or ascending stairs. If friends described the constellations in the evening sky, I pretended to see the star patterns too. On the eighth grade trip to Seaside Heights, NJ, I worried about being separated from the group after dusk and about missing the bus ride home. A friend led me around through the dim arcades. Any high school physical education activity that involved the visual tracking of a baseball or even a volleyball was an act of futility. Classmates mentioned that I appeared to ignore them as we passed in the hallways. I wondered how they could pass between classes—up and down a dim stairway—so quickly. The night blindness was a dramatic, enveloping blackness. Increasingly, I received more than my share of black and blue marks colliding with coffee tables and desks. At school, it proved easier to listen intently than to take copious notes and scan the indistinct contrast resolution between chalk writing and the board. I missed gestural cues such as pointing or an outstretched hand. But the verdict was always the same…20/20 vision. I could read without glasses. Gradually, color recognition became inconsistent. Glare was a problem. In my twenties, after earning a degree in speech-language pathology, electroretinogram results confirmed a diagnosis of retinitis pigmentosa (RP). Tunnel vision or loss of peripheral field was the result. So was hypersensitivity to light and diminished light adaptation. Visual impairment is described in terms of acuity or field of vision. My impairment is characterized by severe constriction of the visual field. Acuity is measured according to the distance at which one sees small print clearly on a letter chart. Field of vision is measured in degrees. Imagine sitting in the first row of the movie theater where you are compelled to move your head back and forth—and up and down—in an attempt to scan the entire screen because your full field of vision is limited. Distance increases field of vision. Thus, when you move back from a large painting at an art museum, you are better able to view the canvas in its entirety. I’ve had help. A mobility workshop given at an RP group meeting by an instructor from the Commission for the Blind included pragmatic tips. Caseworkers have provided guidance regarding orientation and mobility skills. Currently, magnifying glasses, Corning CPF lenses for glare control, and Chromalux bulbs help in my job as a speech-language pathologist in the public school setting. Without proper lighting, the workplace can seem as though it is illuminated by a five-watt light bulb. My husband and preschool daughter give me a clear focus on what is truly important. Paradoxically, visual art—creating watercolor and oil paintings—has been my lifelong hobby. If you are a clinician who will be working with a person with a visual impairment, there are some things you should know. Blind infants, for instance, develop differently from seeing infants. Blind infants cannot read expressive facial signs and the baby’s face may tell us little. But blind infants have an expressive hand language or have subtle motor signs that convey intentionality, emotionality, and reactions. The reach and grasp movements that occur spontaneously in sighted infants may not emerge automatically in the blind infant; the sighted infant’s urge to act on the environment and to reach for an item is generally motivated by seeing the object. The concept of object constancy can also be a delayed developmental milestone because the blind infant does not see or feel out-of-range objects. Blind toddlers may demonstrate a lack of differentiation of self from others. Sometimes this is reflected in their misuse of personal pronouns. Imaginative, representational play could be limited. Such observations were raised by Selma Fraiberg, author of The Magic Years, in her masterful compilation of comparative studies of blind and sighted infants, entitled Insights From the Blind (1977, New American Library). Usher’s syndrome is an inherited disorder that is characterized by significant hearing loss and progressive loss of vision due to RP. Visually impaired students who receive speech and language services will be aided by a heightened awareness of a spatial/directional lexicon as it relates to their orientation and mobility needs (i.e., changes in elevation such as curbs or potholes). The nonspecific direction, “It’s over there,” means little to children with low vision if they miss your pointing cue. Children with low vision often benefit from using computer keystroke commands rather than from maneuvering the mouse because this strategy bypasses the need to visually track a cursor around a screen. Patricia De Wald lives in Dumont, NJ. She currently works part-time as a public school speech and language specialist in Harrington Park, NJ. Contact her by email at [email protected]. Useful Information and Resources for Individuals Who Are Visually Impaired The American Foundation for the Blind (AFB)—the organization to which Helen Keller devoted over 40 years of her life—has a Careers and Technology Information Bank of occupations held by members with visual impairments. They would welcome more SLPs who have visual impairments—five are currently listed. Contact the AFB by email at [email protected], by mail at 11 Penn Plaza, Suite 300, New York, NY 10001, or visit the AFB Web site. The AFB has joined with the Association for Education and Rehabilitation of the Blind and Visually Impaired to host the upcoming “2001: A Technology Odyssey,” a conference focusing on assistive technology for people who are blind or visually impaired. The conference will be held Aug. 3–5 in Pittsburgh at the Westin Hotel. For more information, contact Mark Uslan, AFB co-chair, at 212-502-7638. Contact the Foundation Fighting Blindness (RP, Usher’s syndrome, macular degeneration) by mail at 11435 Cronhill Drive, Owings Mills, MD 21117-2220 or visit their Web site. Access World magazine from AFB Press covers technology for consumers with visual impairment and provides the latest information on adaptive technology and new computer product evaluations. $29.95 per year. Contact subscriber services toll-free at 888-522-0220. Corning CPF Lenses for Glare Control—Corning Medical Optics, HPCB5-1, Corning, NY 14831. Practicing Audiology With a Hearing Loss by Mark Ross Personally, I never have felt that my hearing loss has been a professional handicap—which is not to say that others I came in contact with, particularly in the early stages of my career, did not feel that it was or could be. I was fortunate in that I earned my bachelor’s and master’s at Brooklyn College. The audiology professor there at the time, John Duffy, couldn’t have been more supportive (even hiring me, after I finished my bachelor’s, as a “speech and hearing therapist” at Lenox Hill Hospital). The clinic director at Brooklyn College was Robert West, one of the founders of ASHA and its first president. When I decided to go to Stanford University for my doctorate, he wrote them a one-sentence letter of recommendation saying, in effect, that I was the kind of person who should be in the program. Coming from West, evidently that was all that was necessary. He did not mention the fact that I had a hearing loss. Even now, I’m not sure if he thought that it was irrelevant or if he believed that it would work against my acceptance. In any event, I still remain profoundly grateful to him (not least because I met my wife at Stanford!). When I arrived at Stanford, I simply assumed, perhaps naively, that I would be judged by my performance. Neither I nor anyone else made an overt issue of my hearing loss. Since I did well academically, any reservations (and I learned years later that there were some) were allayed. When I did a practicum at the San Francisco Hearing and Speech Center, the staff, quite appropriately, wanted to be sure that I could accurately take talk-back responses to word tests. When I proved that I could (locating the talk-back microphone close to the mouth of patients while I observed their face in three-quarters profile), any reservations in that regard were resolved. In that situation—and others I’ve encountered in my career—the focus was on my ability to do the job, not whether or not I had a hearing loss. One of the more humorous aspects of my time at Stanford was my being required to see one of the speech pathology professors to resolve the “speech” problems associated with my hearing loss. Fortunately, the professor I saw (Robert Duffy, now a long-time colleague and friend) grew up in Brooklyn, and he recognized that what westerners heard in my speech was not the result of a hearing loss, but of being brought up on the Lower East Side of Manhattan! I was also fortunate in that my first few years of clinical audiology work were at the VA Hospital in San Francisco. The VA regulations required that all speech tests be done with a recorded list and that the patients write down their responses. Not only was this an excellent clinical practice, but it also eliminated any residual concerns anyone might have had about my ability to function as a clinical audiologist. I can’t remember my hearing loss ever being brought up as something that interfered with my clinical performance. After receiving the doctorate, the bulk of my clinical activities focused on testing and managing young children with hearing impairments. If anything, the fact that I had a hearing loss helped rather than hindered my activities with the parents and children. Although I have never actively sought to be a “role model,” this has been a role often imposed upon me since my early days as an audiologist. I don’t really object but, at the same time, as I have pointed out time and again, it should not be necessary for a professional to have a hearing loss in order to deal empathetically, compassionately, and efficiently with people with hearing loss. Fortunately (or unfortunately, depending upon who is involved!) as our field ages, there are now many more audiologists out there to be “role models.” I don’t want to minimize the impact of a hearing loss on my personal life. Of course it has and continues to have an impact in many situations. The fact that I did well professionally, in spite of my hearing loss, does not make me any fonder of it. If I had a magic wand to wave it away, I would do so in an instant. But, given its reality, I am grateful that I was able to function well as a professional and to make a contribution to the field and to other individuals with hearing impairments. Mark Ross is professor emeritus of audiology at the University of Connecticut. Contact him by email at [email protected]. Parkinson’s Disease and Me by Anthony J. Caruso Tin Woodsman mumbles unintelligibly. Scarecrow: “What did he say?” Dorothy: “He said ‘oil can’!” —A scene from the movie “The Wizard of Oz,” 1939, MGM Writing about Parkinson’s disease is a very challenging task. There is much that is difficult to explain about this disease process—how it feels, for example, when my movements are hypokinetic. There is stiffness, and I often find myself telling people that I feel more like the Tin Woodsman than the Scarecrow from “The Wizard of Oz.” My medication is as helpful as the oil Dorothy used with the Tin Woodsman so that he could move and speak. My oil, pharmacological treatment, temporarily increases the level of dopamine that is reduced by Parkinson’s. Unfortunately, the medication does not ensure relief or even last throughout the day. This, coupled with the fact that my schedule as a university professor varies from day-to-day, makes it challenging to time the medications so that they are at their peak when I need fluid, wide-ranging movement. I call this process “tuning myself.” For example, if I have a class to teach at 2:15 in the afternoon, I have to carefully calculate the time of the effective duration of the medication as well as lag time before the medications take their effect. That way, by class time, I will be at or near my peak of motor performance. If on the next day I teach a class in the early evening, then the times at which my medications are to be taken shift considerably. I live by the clock and am never without my meds. I have been very open with my students about my Parkinson’s, and I’ve even told them that the university should increase my salary! After all, on my good days, I can still model normal speech as well as correctly model clinical techniques for the treatment of speech disorders. As a bonus, on bad days I can demonstrate dysarthria, reduced intelligibility, and impaired (non)speech movement. Seems like I should be eligible for a salary increase just for that. But seriously, there are times when it is difficult—if not impossible—to write on a blackboard or to speak with adequate vocal intensity. Some accommodations have been made. I always have to have a microphone for my class lectures even when it’s a small class. I am in the process of putting lecture notes on the computer using Power Point, for example, because there are times when my writing is not big enough to be labeled micrographic. One thing that I have learned since I’ve had Parkinson’s is that when we discuss neurological disorders in our classes, we so emphasize the effects of these impairments on communication that we underemphasize their broader effects on general health status. As a result, we may inadvertently lead some students to think that Parkinson’s is “just” a movement disorder. There are other aspects of this problem that affect health, non-speech physiological function, and state of mind. I feel fortunate that Kent State University has a long history of supporting faculty and students with disabilities. My colleagues and students at Kent State—as well as those I am honored to work with on the Executive Council of the National Student Speech Language Hearing Association—have been supportive and understanding. I believe that everyone feels comfortable enough to ask questions. Interestingly, the reactions of people to my speech and other movements, particularly when I’m having a bad day, have allowed me to relate better to some of my clients who have told me how hard they concentrate on their own speech production in an attempt to monitor for maximum intelligibility. Speech has become a more demanding task for me. I am keenly aware of the changes in my speech and work at a high level of consciousness to make online adjustments to preserve normal-sounding articulation. When I first was diagnosed with Parkinson’s, a colleague told me that he knew someone about my same age who also had been diagnosed a few years earlier. He suggested that I contact this person to talk about the changes that could be expected and to get his insights about living with this problem. I was anxious to speak with this individual and was surprised that another person in his 30s had Parkinson’s. That individual was tremendously helpful to me and I am forever grateful for the opportunity. If there is someone reading this article who has recently been diagnosed with Parkinson’s, I would gladly return the favor and make myself available to share my own experiences living and coping with this disease. As another friend of mine says, “Life is a journey,” and mine had an unexpected twist in the road. But, so far, I have been able to navigate through it fairly well. Indeed, the journey continues and I am always looking forward to the next step. And if my experience along the way would be helpful to others, well, just let me know. Anthony J. Caruso is a professor in the School of Speech Pathology and Audiology at Kent State University. He serves as editorial consultant to the National Student Speech Language Hearing Association and is the editor of Contemporary Issues in Communication Science and Disorders. Contact him by email at [email protected]. Some Suggestions and Resources for Individuals With Parkinson’s Disease Find a neurologist that you are comfortable with and who has expertise in Parkinson’s Disease. The life span of individuals with Parkinson’s is often near normal. Thus, you are entering into a long-term relationship with your neurologist. For me, the most important criterion for selecting my neurologist was finding someone who was willing to enter into a collaborative relationship with me regarding various treatment issues. To find a neurologist, ask your family physician for referrals. Also contact the various Parkinson’s associations. For a list of referral sources, visit the Massachusetts General Hospital’s Web site. A good source for the latest medical news and information for patients or friends of patients diagnosed with Parkinson’s is the Doctor’s Guide Web site. If Parkinson’s is diagnosed before age 40, it is referred to as Young Parkinson’s. Only about 5% of Parkinson’s patients have Young Parkinson’s, and less is known about this variant of the disease than of the Parkinson’s that more typically onsets at age 60 or later. For more information, contact the Young Parkinson’s Information and Referral Center at [email protected] or visit their Web site. Find Out More The Americans with Disabilities Act prohibits employment discrimination against “qualified individuals” with a disability who, with or without “reasonable accommodations,” can perform the “essential functions” of the job. This includes all terms, conditions, or privileges of employment such as recruitment, hiring, promotions, training, lay-off, rates of pay, dismissal, job assignments, leave of absence, and benefits. Information, support, and assistance are available from: Architectural and Transportation Barriers Compliance Board Equal Employment Opportunity Commission Job Accommodation Network800-526-7234 (V/TDD) National Institute on Disability and Rehabilitation Research Disabilities Act ADA Technical Assistance U.S. Office of Disability Employment Policy202-376-6200 (V); 202-376-6205 (TDD) The New Freedom Initiative for People With Disabilities Ticket to Work and the Work Incentives Improvement Act (Social Security Administration) 800-772-1213 U.S. Department of Justice800-514-0301 (V); 800-514-0383 (TDD) Advertising Disclaimer | Advertise With Us Advertising Disclaimer | Advertise With Us Additional Resources FiguresSourcesRelatedDetails Volume 6Issue 14August 2001 Get Permissions Add to your Mendeley library History Published in print: Aug 1, 2001 Metrics Current downloads: 177 Topicsasha-topicsleader_do_tagasha-article-typesleader-topicsCopyright & Permissions© 2001 American Speech-Language-Hearing AssociationLoading ...