Possibilities: Recreational Experiences of Individuals who are Deafblind
Lauren J. Lieberman, Ph.D.
The College at Brockport
Justin A. Haegele, Ph.D.
Old Dominion University
Maricar Marquez, MS
Helen Keller National Center
APH Project Staff
- Rachel White, Research Assistant and Lead Editor
- Li Zhou, Core Curriculum Project Leader
- Tristan Pierce, Physical Education Project Leader
- Denise Snow Wilson, Research Assistant
- Anthony D. Jones, Art Design/Production Manager
Note: Throughout this collection, the abbreviation SSP is used to represent support service providers. SSPs are specially trained professionals who enable people who have combined vision and hearing losses to access their environments and make informed decisions by providing them with visual and environmental information, sighted guide services, and communication accessibility (American Association of the Deaf-Blind, 2012).
Table of Contents
- Rachel Weeks- Triathlon
- Maricar Marquez- Running
- Kristine D’Arbelles- SSP—Swimming Triathlon
- Heidi Zimmer- Mountain Climbing
- Cody Colchado- Power Lifting
- Corrina Veesart- Ballet, Cheerleading, Rock Climbing, and Yoga
- Emily Desfor- SSP—Outdoor Adventures
- Kevin Frost- Speed Skating
- Ryan Ollis- Running
- Faye Frez-Albrecht- Soccer
- Quinn Burch- Dance, Horseback Riding, and Running
- Nicholas Abrahamson- Hiking the Appalachian Trail
- Bruce Visser- Traveling
- Jason Corning- Running
- Sarah K. McMillen- Ice Hockey and Taekwondo
- Angela Theriault- Running
- Scott Keeler Bass- Biking
- Maria Marquez Dykman- Wind Chimes
Lauren J. Lieberman
The purpose of this collection is to highlight the recreational and leisure pursuits of individuals who are deafblind so the reader will see the Possibilities associated with recreation for such individuals. Each of these essays is meant to inspire the readers to share their recreational experiences with others. Whether it is through verse, prose, music, or visual art, the reader will be able to pass down the inspiration to another generation.
Why is it Important?
An event in Belgium brought to light how important it is for individuals with deafblindness to learn about the successes of others who are like them. In 2012 a pair of 45-year-old twins, Marc and Eddy Verbessem, petitioned the Belgian government for the right to end their lives. Marc and Eddy were born deaf and had lived and worked together their whole lives. When they discovered that they had an incurable condition that would take away their vision and thus their ability to see one another, they began to consider euthanasia, a form of government sanctioned suicide reserved for those who are suffering. As their older brother Dick Verbessem explained, the twins did not want to face institutionalization because of their blindness. They viewed blindness as an unbearable condition in which they would lose not only their ability to see, but all of their independence.
Why did the Verbessem twins think that institutional living was their only option? A diagnosis of deafblindness can often lead to feelings of despair and helplessness in the individual. However, it is important for everyone to know that with patience, modifications, and accommodations, individuals who are deafblind can lead active, exciting, and productive lives. Many technological innovations can help in this process. In addition to braille, innovations such as screen readers and refreshable braille displays allow individuals with deafblindness to enjoy the written word. Sign language interpreters can listen to spoken language and turn it into hand signs. Interveners can use tactile signing (making hand signs into another individual’s hand) to interpret for the individual with deafblindness. Through these services, as well as education, and other accommodations, persons with deafblindness can enjoy literature, performing arts, recreational activities, and the adventures of daily living.
What is Recreation?
People often use the terms recreation and leisure interchangeably. Both relate to the use of free, unconstrained time that is not otherwise used for work, school, or other required daily living activities. Leisure time is any free, uncommitted time that is used for a chosen activity; recreation is a preferred pleasurable activity enjoyed during leisure time. Recreational activities can be sedentary (less physical) in nature, such as knitting, playing chess, playing musical instruments, or social networking on the computer, or they can be activities that enhance physical fitness, such as walking, skiing, bowling, hiking, rock climbing, boating, bicycling, and many others.
Individuals with deafblindness can participate and enjoy all of these activities, but unlike non-visually impaired persons, they do not learn recreational activities by observation. Recreation must be taught intentionally with specific instructional techniques and safety in mind. This is why professionals in the field of blindness have chosen to include ‘recreation and leisure skills’ as one of nine components of Expanded Core Curriculum (ECC). The ECC is an educational framework that emphasizes critical development areas for students with visual impairments (Hatlen, 1996; Sapp & Hatlen, 2010). It was developed to help students with visual impairments gain the skills necessary to be independent, productive and educated members of society. By learning about services, modifications, and accommodations in regard to recreational activities, parents, caregivers, and students with deafblindness will be able to overcome physical barriers and succeed in recreational pursuits. An added benefit of the ‘recreation and leisure skills’ component is that it can also help with other components of the ECC such as ‘social-interaction skills,’ ‘orientation and mobility,’ ‘independent living,’ and ‘self-determination.’
Benefits of Recreation
Quality of life refers to the general well-being of individuals and societies, and one’s personal satisfaction (or dissatisfaction) with the cultural or intellectual conditions under which one lives; essentially, it refers to a person’s overall health and happiness. Recreation can increase quality of life or life satisfaction in individuals with deafblindness as it allows for social interaction and provides health benefits that help buffer the adverse effects of stressful, busy lives (Iso-Ahola, Seppo, & Park, 1996; Tsai, 2005). Recreation is especially important for people who are deafblind, as they often go through long periods of unemployment. Regular activity keeps these individuals active and engaged in the community.
Research has shown that recreation is an important factor in quality of life for everyone, including older adults and people with disabilities (Barnett & Weber, 2008; Johnson, 2009; Lieberman & MacVicar, 2003; Tsai, 2005). Recreation provides social interaction as well as physical and emotional health benefits. Individuals who engage in recreational activities can benefit by having improved cardiovascular function, better ability to sleep, improved self-esteem, increased stamina, and decreased stress levels. Each of these benefits may not only improve quality of life but can also have a positive effect on the individual’s other daily activities (Zabriskie, Lundberg, & Groff, 2005).
The writers in this collection have bravely engaged in recreational activities and succeeded to their great benefit. We are pleased to offer these enriching and inspirational stories on recreation from individuals who are deafblind.
I never thought of myself as an active person until later in life. My optometrist unhappily told me, through a tactile sign language interpreter, that my vision loss had progressed rapidly due to the fact that I had Usher syndrome. As a sighted person, I found the news devastating. The more my vision loss progressed, however, the more I became aware of the challenges other individuals who are deafblind face. Due to a lack of support, communication, and understanding, isolation is often a major aspect of life for such individuals. Individuals who are deafblind can have a strong tendency to feel left out because they may not know what is going on around them; often, sighted people may not know what to do with them which serves to isolate them further.
Following my diagnosis, I slowly became immersed in the deafblind community. I have worked at the Helen Keller National Center for Deaf-Blind Youths and Adults for many years, providing individualized rehabilitation training to individuals who are deafblind. In turn, they have taught me how to better understand the challenges of their life experiences. In most states, individuals who are deafblind are geographically dispersed and may find it difficult to meet others who are like them. When it is a beautiful day, people who are deafblind may not be able to go outside or act spontaneously because they may not have any communication modalities other than language. Caregivers and facilitators must learn to adapt their communication methods in order to meet the needs of the individual. I have discovered over the years, however, that one way to significantly improve the lives of those who are deafblind is through recreation.
Recreation is an essential part of life for everyone, including those who are deafblind. With the right accommodations, recreation can be a valuable part of life for a deafblind person. Modifications are necessary of course, and activity facilitators should be aware of the communication and activity modifications that are needed in order for such individuals to remain active. For example, individuals who are deafblind may not be aware of what is happening in their surroundings, or be able to navigate in an unfamiliar setting. They may not have equal access to the same communication mediums as sighted individuals. A facilitator who is well trained and aware of these barriers will be able to provide these accommodations and empower the individual to live a more active and independent life.
It is through my gradual immersion in deafblind culture and my involvement in several related conferences that I met Dr. Lauren Lieberman. She was full of energy. She brought tandem bikes to the conferences so that attendees who are deafblind could experience the freedom of pedaling in the fresh air. We both agreed that those who work with individuals who are deafblind should act as advocates for them and foster their independence; in life, as with tandem biking, we do not pedal alone but with others, relying on each other’s confidence and skill. In this collection, we would like to share with you the experiences of several individuals with deafblindness who have overcome many obstacles and made great achievements in recreation, in sports, and in life.
When I was growing up, the question would often arise: ‘if given a choice, would you rather be blind or deaf?’ As a hearing impaired child, not aware of the cause of my impairment, the question was not an easy one to answer. Little did I know that at age 19, I would have to face losing both my hearing and sight with a diagnosis of a rare genetic condition called Usher syndrome. Because Usher syndrome is a degenerative disease, it requires the person to constantly adapt, adjust and persevere. It is also genetic and I continually worried about my daughters, my sister, and my nieces. None of them show signs of the disorder; for that, I am grateful.
As a child, I was only aware of having a hearing impairment and was very active as a dancer, gymnast, horseback rider and cheerleader. I wore hearing aids, took speech therapy intensively and did quite well in mainstream classrooms. When I attended elementary school in Nashville, Tennessee, where I was born, I had an aide in class and the attitude of my classmates was that of acceptance. There were other schools that I attended where the students were less accepting and I experienced bullying and indifference. It was not until I went to high school that I found a group of peers who accepted me and, in some cases, forgot that I had a hearing impairment all together. My teachers in high school were thoughtful and inclusive, helping me become an honor and advanced placement student. I eventually received a full ride to the University of South Florida and received my masters in counseling. I now work with youth and adults, helping them in their jobs, classrooms and daily living activities so that they can be at their highest functioning.
After graduating from high school, I remained physically active until I became more sedentary during my masters program. After I received my degree, my sister mentioned that she was participating in a half marathon with her college roommate, which is when I became interested in running and discovered guide running. A guide runner is a partner who runs alongside runners who are visually impaired or blind, providing guidance for them during a race. Guidance can involve running in front of the athlete, running beside the athlete and giving verbal cues, or running with a wrist or waist tether between the runner and guide. My sister was my first guide and we found the waist tether to be the best support for me. I went on to finish races in the 5K, 10K and half marathon distances. While I loved running, my first desire was to participate in the Ironman Triathlon.
I first heard about the Ironman Triathlon from a professor at the University of South Florida. She was in her sixties, had lost a lot of weight, quit a drinking habit, got her Ph.D. and went on to complete a triathlon which involved a 2.4-mile swim, a 112-mile bike ride and a 26.2-mile run. I remember sitting in her classroom, six months pregnant, visually and hearing impaired, saying to myself, "I want to do that!" I eventually learned that I could participate in Ironman competitions with a guide in the same way that I could participate in running with a guide. This is when my journey truly began.
Since I was already running, all I needed to learn was swimming and biking. I began swimming laps which was not easy at all; I was used to swimming with full vision and to swim as an adult with no peripheral vision was extremely difficult. However, with each lap I grew stronger and after months of practice I gained my rhythm. Biking was an even greater test of patience. I had no clue what a derailleur, cassette or cycling name brand was and I had to navigate the world of tandem cycling.
After receiving a grant from the Challenged Athletes Foundation towards a tandem bike, I began to test tandems out. I found my first tandem in Greenville, South Carolina at TTR Bikes. My sister and I named it The Beast and soon began launching, stopping, learning the gears, and hill climbing. We combined tandem biking with swimming and running and this prepared me for my first triathlon in June of 2012. I have since gone on to compete in multiple races of varying distances including Ironman Texas 2013, my biggest race to date.
The world of sports has not been a place of barriers for me but one of huge opportunities. The primary challenges have been financial costs which include shipping large equipment as well as two people to races and the fact that race directors often have no experience with athletes who are blind or visually impaired. Many times it is up to the athlete to educate directors and those involved with the races about visually impaired and blind racing techniques. Luckily, there are many organizations in place for visually impaired and blind athletes, as well as athletes who are deafblind. These organizations include Challenged Athletes Foundation, Achilles International, Team RWB, Team with a Vision, USAT Paratriathlon, and Dare2Tri Paratriathlon to name a few.
My goals for the future are to compete in the 70.3 and 140.6 World Championship Ironman races as well as to work towards a designated championship race for physically challenged athletes in the 70.3 and 140.6 distances. I would also like to coach youth who are visually impaired, blind and deafblind in the sport of triathlon. I have partnered with Camp Abilities and started my own team, Light Up the Darkness, in the Tampa Bay Area. I’m excited about coaching, raising awareness in youth and adults, and promoting health and wellness through sports.
My first triathlon was the Seacrest-TOBAY Triathlon in Oyster Bay, New York. It consisted of three events: a 1.2-mile swim, a 9-mile bike ride, and a 3.1-mile run. I worked with four SSPs: Kristen and Jim, who swam with me in the bay, Susie, who followed me on a tandem bike, and D’Andrea who joined me for the running portion of the race.
During the swim, Kristen swam on my left side while Jim swam on my right. They looked ahead for me and made sure that I was swimming in the right direction. The bay was full of waves and splashes from other swimmers and it was impossible to swim in a straight line as you can in a swimming pool, so I needed their additional guidance.
During the bike race, Susie patted on the bike handle as a signal to me to pedal fast or slow; one pat meant pedal slower and two pats meant faster.
For the running portion of the race, D’Andrea and I ran together. When we were in the open, I could run independently with D’Andrea on my side. As we ran towards the finish line, I placed my hand on her hand to feel her signing, "People are cheering!"
After the triathlon I decided to run in the New York City Marathon with Jim as my guide. Jim and I wrapped a cloth tether that was cut from the hem of a T-shirt around our wrists. We stayed close together at the starting line as we squeezed in among the other 30,000 runners. As the runners began to spread out, we unwrapped the cloth tether and allowed some distance to come between us. As the runners scattered, we ran more freely, about two or three feet apart with the cloth hanging over our hands. About halfway through the race, I injured my knee and had to slow down. With three miles left in the race, I couldn’t tolerate the pain anymore and had to rely on Jim’s lower arm as we ran through Central Park. Finally, we saw the lights beaming from the finish line; I put my hand over Jim’s signing hand, and he counted down from five before we finally crossed the finish line.
When Maricar brought up the notion of participating in a triathlon, I thought it was a terrific idea for her but not necessarily for me. I’m a decent swimmer but not a great athlete. Maricar was my friend though and she needed an SSP so I agreed to support her.
My experience as an SSP goes back nearly 25 years to when I was a 16-year-old volunteer at the Helen Keller National Center. Working mainly with young students around my age, I gained a valuable perspective on what is important in life: connections between people. This experience and destiny, perhaps, brought me to work at the Helen Keller Institute and eventually to meet Maricar and participate in the Seacrest-TOBAY Triathlon.
The 3.1-mile run and 10-mile cycling were simple to coordinate for Maricar; use a human guide and a tandem bicycle. The half-mile swim proved more difficult. How could we guide Maricar out a quarter-mile into Oyster Bay Harbor and back again without putting all of us at risk? We finally decided on the “flank,” which would work like this: Jim and I would swim on either side of Maricar, providing a physical marker so that she could continue swimming in the right direction.
On the morning of the race, I was filled with dread and fear. It was cold and damp outside, and Oyster Bay Harbor looked dark and intimidating. Maricar seemed nervous, yet confident and her positive attitude rubbed off on me; I knew I couldn’t let her down. As we walked toward the water I thought about how cold it looked; when the moment came to dive in, however, I never felt the cold. Jim, Maricar and I swam in a horizontal line out into the bay lifting our heads out of the water to look for the marker. I felt Maricar’s arm or leg touch me and I signaled for her to gently ease her direction toward Jim. As we reached the quarter-mile marker, I reached out for Maricar’s hand to signal our turn-around.
A Newsday photographer snapped photos of us as we exited the water. The newspaper wanted to capture the historical event: a woman who is deaf and blind competing in a triathlon. The photographer took several photos of us in our bathing suits and we joked that they better not choose them for the cover.
There was not much time for reflection immediately following our swim. Maricar had the cycling event and the run ahead of her. She changed gear and was on to the next race, the 15k bike ride. Other SSPs would now takeover in the remaining events to provide fresh energy, giving Maricar optimal opportunity to succeed.
Maricar did reach her goal and became the first deaf-blind woman to participate in and complete the Seacrest-TOBAY Triathlon (not to mention, with a solid time). As she received her award on the podium, I realized that her victory was more important to me than my own would have been. At times you realize that the gratification you get from supporting friends can far exceed the ego boost you get when you achieve your own personal victories.
I am a third-generation Californian, born in San Diego in 1951. My parents, who were scholars, didn’t have any specific expectations of what their children might become; my mother wanted healthy babies, and my father hoped we would use our minds to make worthwhile contributions to the world. They gave each of their children names from different countries in the hopes that we would have a worldly vision; they named me Heidi, after Johanna Spyri’s classic novel, and the name matches my mountain lifestyle perfectly.
My parents first suspected my deafness when I was several months old; when all the other children my age were babbling I hadn’t even made a first sound. Hoping to find answers, they took me to Dr. Goodhill, a world famous ear specialist, to find out for sure whether or not I was deaf. When the staff came in to deliver the news, a nurse was ready with smelling salts for my mother who already suspected the truth; as the doctor said, I had profound congenital deafness for which nothing could be done. Dr. Goodhill told my parents very simply that they could either run from doctor to doctor trying to find some easy cure, or accept my deafness and start doing their best to educate me and help me live a useful life. They took his advice and set out to encourage and educate me. Determined that I would not be pampered and babied, but that I would become even greater because of my handicap, they wrote this letter to me:
October 15, 1953
At first it was a real shock for your mother and me to find out what we had feared for several weeks—that you are deaf. One’s beginning thoughts go everywhere except where they ought. The conventional questions always come to mind: Why did this happen to us? Isn’t there something we can do? Surely this is a dream out of which we will awaken. But later on we began to see how real it is and find that we have to adjust to new experiences, some of which we do not really like.
So this letter, Heidi—you have a handicap, but you must not let it stop you from being the kind of person you really ought to be. Almost everybody of real worth has a handicap of some kind or other. Indeed, many truly great people have been deaf. Sure, it makes life more difficult. But don’t ever pity yourself or let other people pity you. Of course your parents’ hearts break for you, but we are not half as broken as are those whose children choose to do what is wrong.
Remember this—it’s not what you face, but how you face it that counts.
With all our love,
Your parents, Dixie Gene and John
Dr. Goodhill recommended that I be taught at home instead of sent away to school. The leading method at the time was oral philosophy, which doesn’t work for all children who are severely-to-profoundly deaf. I was often frustrated in my efforts to communicate. It was only with the strength of character that my parents instilled in me, that I would eventually find the key to my personal growth in sports and eventually in mountaineering.
As a little girl, I was fascinated by the articles in National Geographic about Mount Everest and other mountain cultures, and I fell in love with hiking when my father took me backpacking. This passion only grew as I got older. Later, I attended the School for the Deaf and throughout junior high, high school, and college I played a variety of sports, including volleyball and track and field. I competed in the women’s high jump at the Deaf Olympics in 1969 and 1973, and won the bronze medal in that event at the Yugoslavia Olympics of 1969.
I didn’t have any problems with communication while I was playing sports at the School for the Deaf, but I often bumped into people or poles. My family thought I was a more aggressive player than I really was. It wasn’t until I was diagnosed with Usher syndrome in 1996 that we understood those collisions.
As an adult, I moved to Colorado, adopted a mountain lifestyle, and began training as a mountaineer. As a person with deafblindness, I face plenty of barriers when I’m climbing mountains. One of the toughest challenges for me is talus, the piles of rock fragments at the base of crags or cliffs. Navigating talus makes balance very difficult, especially in the dark. I am also a Telemark skier, which requires much more balance than downhill skiing. Both are deeply challenging, but I love climbing mountains and I love Telemark skiing, so I practice with balance, and I improve a little every time.
With hard work and determination, I became the first person who is deaf and the first person with Usher Syndrome to reach the top of three of the Seven Summits. The Seven Summits are the highest mountains in each of the seven continents. I conquered Denali (also known as Mount McKinley) in Alaska, Mount Elbrus in the Republic of Russia, and Mount Kilimanjaro in Africa. My goal is to become the oldest woman ever to climb Mount Everest and the first woman with disabilities to complete all Seven Summits. I also plan to be the first woman with disabilities, the first person who is deaf, and the first climber with Usher Syndrome to climb Mount Everest.
I have a vision that people who are deaf, hard-of-hearing, and deafblind will learn they can do anything that they dream, as my parents taught me. I’m passionate about sharing my experiences, particularly with children and those who are deaf and deafblind, because an active lifestyle is so fulfilling. Young athletes who are deafblind get to celebrate their strengths right when self-esteem is both so vital and so hard to come by. Through my discovery of sports and mountain life, I developed self-esteem and my own identity, which has given me strong mental and physical health throughout my life.
My name is Cody and I currently work as a motivational speaker, strength & conditioning coach, high school trainer, and assistant manager for my family’s ranch, Santa Rita Farms, in San Manuel, Texas. I have always had hearing loss but in 1981, I had a freak football accident that brought on vision loss as well. After the accident I had only five degrees of vision left and was diagnosed with Usher Syndrome type II.
For many years I was in denial about my deafblindness and felt a great deal of anger and frustration over my loss of vision; this is when I began power lifting and found that I loved it. Power lifting is an individual sport that you can do anywhere (you don’t even need a ride to the gym if you have your own equipment); it doesn’t take much equipment to get started and you can always build on what you have. This made it the perfect sport for me and the perfect outlet for my emotions. I soon began attending a gym where I met my coach, Clint, who taught me the basics of power lifting and gave me a job there.
I practiced regularly at the gym and taught myself how to get around, quickly becoming accustomed to the placement of the different exercise machines and memorizing where each item was. Luckily, the equipment was kept in the same place and was well organized and; if something was out of place, I learned how to look for it. I worked with a spotter for heavy lifting and used my anger as motivation; the angrier I got, the more I lifted.
As I continued lifting, I began to power lift competitively and later joined the United States Association of Blind Athletes (USABA). I am currently a 30 time world champion in power lifting for the blind as well as sighted in the ATA, IBPF, IBSA, and WADAL Power Lifting Federations. I have won approximately 15 Texas state championships and numerous national championships. In 2012, I was inducted into the World Association of Bench Press and Dead Lifters Association (WABDL) Hall of Fame, becoming the first person with a disability to receive that honor. I also participated in strong man competitions and became the first American to become the World’s Strongest Disabled Man, Standing Division.
In addition to lifting, I have participated in other sports including fishing, hunting, shooting, running, and even Taekwondo. In 2014, I entered a fishing competition in Galveston, Texas, the Turning Point National Disability Fishing Tournament, and got first place in the adult division and was named angler of the year! That same year, I entered a target shooting competition, the South Texas Pistol Shooting Championship, and won first place. I also participated in the Challenged Sportsmen of America Shotgun Shooting Challenge. These experiences allowed me to meet other Sportsmen with disabilities and helped boost my confidence in trying new things. I have competed in track and field as well and have gone on to many competitions, winning three National Championships for the Blind in track and field in the pentathlon event and also participating in the 100 and 200 meter run, the 1500 meter run, shot put, long jump, and javelin discus throw. I even won the Taekwondo CTF Competition in Board Breaking, Able Body Division.
I still lift in my home gym, but will only do light weights unless I have someone to spot me. I lift and also run to build my cardio; at home, there is an open area where I can run; I use ropes to keep me within the right area. I have had wonderful training partners who have been patient in working with me; I could never have accomplished all I have without their help and the help of many others. I practice a skill until I get it right and then build on it. I have had many, many failures, but I never give up.
Lifting weights has opened up the world to me and made it a far less threatening place. I have not only traveled to different states such as Colorado, South Carolina, Nevada, Washington, Florida, Oklahoma, and California, but have also been abroad to Canada, Mexico, Czechoslovakia, Austria, and Holland representing Team USA. Physical fitness will always be part of my life because it helps me release stress, maintain my weight (because I love to eat), and makes me feel young.
Ballet, Cheerleading, Rock Climbing, and Yoga
I am a 33-year-old woman who is deafblind; I grew up loving a wide array of recreational and physical activities, including dance, cheerleading, yoga, rock climbing, swimming, tandem bike riding, exercising with gym equipment, hiking, and more. These activities have given me an outlet for when I’m frustrated, rekindled my spirit, and provided me with a sense of purpose. I am totally deaf with very low vision/blindness. I can see the shapes of some objects when the colors contrast sharply with each other, such as shapes in black and white; if lighting and contrast are good, I can sometimes make out the outlines of people or objects. My sense of touch and smell also inform me about the environment.
Throughout elementary and junior high school, I loved movement. I loved to spin and flip on the bars every afternoon during recess. I even won an award in junior high for the most inspirational student in physical education class. As a young child, I loved watching dance, though I had no experience with dance and didn’t have the kind of coordination in my body to understand and feel the rhythm. I didn’t even like music until I was older and grew to appreciate it through the opportunity to touch the instruments as they were played. I could also appreciate it by touching the singer’s throat with my hand and feeling the vibrations of the voice. In elementary school, a ballet company came to perform for us and I was completely inspired by the dancers. I sat still in a state of awe as I watched the jumps, some of which resembled frog leaps. Later, I hopped around, trying to imitate the graceful jumps of the dancers I had been watching.
My first ballet class was a spontaneous event. A good friend and I showed up for a ballet class in a local dance studio one evening. I was wearing baggy overalls and had no idea how to dance ballet. I was completely unprepared to take the class. Luckily, the ballet teacher, Michelle, made us feel at home right from the beginning. She simply rolled up my overall bottoms and began teaching me the basic steps of ballet as if it were no big deal to have a student who is deafblind in her class.
In that first class, and in every class that followed, Michelle included me with my fellow dance students. I had an American Sign Language (ASL) interpreter, Robin, who provided communication and environmental information for me during class. She wore all black, which provided good contrast with her pale skin and the light colored floor and walls of the room. The sharp color contrast was important as it allowed me to see her hands signing against the background of her black top. Michelle, the teacher, chose an experienced dancer from the class to stand next to me, so I could follow her movements. The student also wore black from head to toe including a black long sleeved leotard or dance sweater, black tights, and black shoes. I stood close behind the chosen dancer to imitate her movements. Michelle regularly came forward into the dance space to correct me, relay vital information, or show me a certain move I had missed. My interpreter for the class used hand-over-hand techniques to show me the flow of certain ballet hand movements, guiding my hand or arm while it was over her own so I could trace how to perform the specific movement. Then she backed off and I danced as I had been shown, following along with the group of other dancers and the dancer in front of me dressed in black.
Learning ballet was not always easy for me. Even for a teacher as patient as Michelle, it was hard to include me in every aspect of the class. Her positive "you can do it" attitude and patience is what really helped. Because she didn’t know sign language, she devised various touch cues to help me understand what to do quickly and efficiently; for example, a tap on the leg meant "straighten your leg."
Later, when I was taking classes at the local community college, I realized that not all dance teachers shared the same attitude. One teacher wouldn’t let me have a student dancer to follow. Others didn’t understand why it took me so long to learn the movements. Still others were intently focused on teaching the hearing-sighted (often more skilled) students and I couldn’t keep up. I remembered Michelle’s words at the start of many of her classes: "This is Corrina. She is deaf with a little vision. She is a great dancer and has taken my class for many years. If you know any sign language, she would love to chat with you …” and I wished I had better support from the other teachers.
Community colleges should support classes like Michelle’s as it is vital for all students in the community college setting to have opportunities to explore music and dance. I would love to take a dance class again in the future and I am thankful that I had such an excellent dance instructor who was willing to teach me.
The first time I tried out for cheerleading squad, I did not make it; I had never taken a dance class, and had no experience with that kind of body movement and body coordination. It was about this time that I grew to appreciate music by having the opportunity to touch the instruments. Music really helped me develop my sense of rhythm. Over time, I developed an improved sense of dance, movement, and body coordination. This, along with my ballet classes helped me develop confidence, improve my body coordination, and gave me an understanding of the rhythm of the body in movement. When I tried out again a year later, I made the team.
There were many steps along the way in my development as a cheerleader. One task was to get to know my fellow cheerleaders, and to learn to work with them. To this end, my mom and I sat with the team in a circle one afternoon in my school’s gym. We discussed how they could communicate and interact with me and we shared some basic sighted guide techniques, and other ways to support me. We had fun learning about each other and giving name signs to each person. We established respect, shared ideas about teamwork, and generally formed a connection and rapport between us. Without this communication at the beginning of the cheerleading season, I don’t think we could have developed the openness and support necessary for my success.
Learning the cheers was another slow process, but everyone was very creative and patient. In the beginning, it took an entire week for me to learn one simple cheer; my interpreter, cheer coach, and fellow team members worked with me continuously allowing me to practice a cheer over and over again until I had it right. The team used a hand clap to teach me the rhythm of the cheer and I learned to say the cheers and make the moves at the right time. Eventually, I was able to learn new cheers much more quickly.
My interpreter also helped me understand the games of football, basketball, and volleyball more clearly so I could relate to what was happening in the games and understand what I was cheering for. At halftime, when the others raced out to the field to perform stunts (which I was unable to do) I stood in a pose or excited the crowd by running across the field waving my pom-poms.
When cheerleading for football, basketball, or volleyball, one of my teammates stood in front of me in formation and signed “Ready, OK!” to cue me when to start giving a cheer so I could be in synch with the rest of the squad.
Through cheerleading, I showed my high school and my community that, with the right support system, deafblind people can do anything they set their minds to do. I was committed to being a cheerleader and understood it was a big responsibility and a way to serve my school and community.
My first rock climbing experience was at Camp Abilities, a one-week sports camp for children who are deaf, blind, have low vision, or are deafblind. Years after that, I climbed at a rock climbing gym in my hometown with my friend and interpreter-support person, Rachel, who is an expert climber. She taught me some basics and helped me learn to trust the rope. It wasn’t until I met my friend Jeff, a professional rock climber, and his wife Emily who is an ASL interpreter and instructor that I got more deeply involved in rock climbing.
Jeff is a professional athlete and engages in a wide array of athletic activities regularly, but rock climbing is one of his favorites and he describes himself as sure footed like a mountain goat. Jeff’s experience and skill level combined with his wife Emily’s ASL communication skills make them a team I trust to keep me safe on the rocks.
Jeff and Emily live in an area where there are lots of beautiful green trees and tall mountains that are perfect for climbing in the summer and for skiing in the winter. Like Jeff, Emily is an avid athlete and she belays for Jeff and I, and helps with communication since Jeff is still learning sign language.
Jeff climbs up the rock first to set the anchor while Emily supports me as I put on my harness and rock climbing shoes. Then, when Jeff is ready, he helps me tie my harness onto the rope; he trusts his knots better than indoor rock climbing gym clasps. Before we start the climb he reviews climbing techniques with me and reminds me to keep my butt out and to trust the rope. When I am ready, he attaches his rope to mine and we climb in tandem on the rock face.
Jeff lets me lead the climb just above him. It is challenging to hold on with one free hand and feel around with the other in search of handholds. Sometimes he helps support me by holding my foot in his hand when there are very few footholds, now and then suggestively tapping the rock to indicate a place where there is a good hold. We have developed touch cues to communicate on the rock; he signs, "Good" into my hand when I am progressing up the rock wall. The work is slow and scary at times as I often can’t tell how much further to go, how far below the ground is, or where the edge of the rock might be and this makes me feel breathless. When I am close to the top, I whale wiggle my way onto the top of the rock relying almost entirely on my sense of touch.
Rock climbing is a sport that requires precise support, skills, and awareness, so I am uncomfortable climbing with just anyone. With Jeff’s expertise, it makes for a safe and fun challenge.
I used to think yoga classes were all about hot rooms and sweating, which I don’t like, until my friend Emily took me to a slow-paced, easygoing yoga class and I realized how much I could enjoy it. The class was called Yin Yoga, where you hold the poses for five minutes. My many years of ballet and Pilates helped me with the poses, but learning how to relax and breathe deep into my body proved more difficult, as breathing is so central to yoga.
My third semester in college, I registered with a new yoga teacher, Kasey, who turned out to be fantastic. She has a light, easy personality and emphasizes the experience. Not only did her positive attitude reflect the spirit of yoga but she was also very skilled and in top physical condition.
My support person in that class had some ASL skills but was not a professional interpreter. She was, however, quite experienced with yoga. We placed our yoga mats side by side; she dressed all in black to contrast with her pale skin, and demonstrated the poses for me up close as I did my best to copy them. She developed touch cues to help me feel from her touch what to do so that I didn’t have to strain to see what was going on. She told me not to worry about my balance as others in the class were struggling with their balance as well. Most importantly, I learned that yoga isn’t about the past or future — but about NOW. Yoga is a journey; it’s about breathing, and getting to know your own mind, body, and soul.
I learned how to breathe through each pose, slow and deep into my body. Even when I missed some of the instructions, my support person tried to pick out what was most important for me to know, informing me at the end of every meditation session that the teacher had said "Namaste” which means, ‘Thank you for sharing the experience of yoga with me. Peace be with you.’
A few summers ago I taught a yoga class at Seabeck Deafblind Retreat to a small group of my deafblind peers. I found it tricky trying to include everyone. I realized how much I have learned and how much I have yet to learn. I asked my students for their feedback, and enjoyed being in synch with a group of other people who are deafblind like me, all doing our best to learn. I want to continue to improve my yoga techniques and skills because after each yoga class, I notice I feel stronger and my balance seems slightly improved; I suspect this is because as my body strengthens, it is better able to support itself. I advise other people who are deafblind to try yoga and learn meditation, relaxation, and breathing skills.
My interest in learning sign language started early. As a young child in Long Beach, California, I had three Deaf friends, and learned to fingerspell and gesture in order to communicate with them. Those early experiences stuck with me and when I went to college I decided to make Deaf Education my area of study. After graduation, I got a job teaching at a school for the Deaf, where one of my additional duties was to teach American Sign Language to families. Later, I began teaching ASL at a local college, which is where I met Corrina’s parents who were enrolled in one of my courses. They introduced me to their seven year old daughter, Corrina, who is Deaf-Blind. Her parents asked if I would tutor Corrina and I agreed. Since that time, I have had various roles in Corrina’s life including teacher and interpreter. Now our relationship is that of friends and she has come many times to stay with my husband Jeff and I where we live in Truckee, California.
Jeff and I live a very outdoor oriented and active lifestyle here in the Sierra Mountains. Jeff is a cross country ski coach and a skilled outdoorsman. We are both avid cyclists and rock climbers. With Corrina, we have enjoyed hiking, backpacking, rock-climbing, cycling and swimming. Cross country skiing has proved the most challenging activity to do with Corrina because of the difficulty of balancing on the skinny skis. It is also hard for Corrina because she cannot see the constantly changing terrain and we cannot give her auditory information as we ski. We often get our skis entwined and end up in a pile-up. In contrast, riding a tandem is the easiest of our activities. We have made the riding challenging, however, by tackling some steep mountain roads.
Jeff is a great guide for some of the more difficult trails but it is getting more difficult for me to jump over rocks and bushes while staying balanced and keeping Corrina on the clear part of the trail. Once when Corrina and I headed out for a walk around Donner Lake we found deep snow six and a half miles into the seven mile loop. Corrina kept laughing as we broke through the snow or slid sideways on the slippery surface. The trip wore on me physically from the pulling and falling, but I strove to keep my sense of humor throughout our journey.
One of my favorite stories with Corrina took place on Valencia Peak of Montana De Oro State Park, a beautiful five-mile hike with coastal views, wildflowers, and the sound of waves crashing into bluffs. Right after we left the summit, the trail became very loose and rocky and the weather became extremely windy. Suddenly, my hat flew off of my head. My initial reaction was to lunge for it, but first I needed to let Corrina to know what was happening. As I turned to her, I saw a rattlesnake on the trail just a few feet from where we were standing. I signed, “SIT” into Corrina’s hand and we sank to the ground together where I could explain the situation to her while keeping an eye on the snake. She responded to me immediately, remaining in that position until the danger was over. Fortunately, the snake passed and I was able to take my hat from the bush while Corrina stayed in her crouching position. This trip demonstrates the absolute trust Corrina has in my husband, Jeff, and I. We always marvel at how willing she is to try almost anything we suggest.
A deaf-blind speed skater skates as fast as he can to his dream.
Like every little boy in Ottawa, I grew up a hard core hockey fan. The only difference between me and the other kids was that I was deaf and would later lose my vision due to Usher syndrome. I wasn’t particularly good at hockey but I was a great skater, so a friend suggested I referee. Refereeing became my dream job and I was the most happy when I was on the ice, skating from one end of the rink to the other all while watching the puck fly between players. Refereeing would later lead to my interest in speed skating.
My life began to change when I developed vision loss, and lost both my job and my marriage and was forced to stop refereeing. What helped me back up was a beautiful black lab and service dog named Nemo and a friend of mine who suggested I try speed skating. With a community at my back, friends and family at my side, and about 100 hours of long and short track training at the big oval skating track at Brewer’s Park in Ottawa, I realized I could be a speed skater despite my disability. Mike Rivet, a past Olympic speed skater and a Speed Skating Coaching Board member, volunteered to be my coach. With his knowledge, background and experience, I learned the sport and became a world champion and gold medalist.
Many people wonder how I am able to barrel down an oval rink at top speeds without the use of vision or hearing. The answer is, I rely on feeling and learn through repetition. Every time I train on a new rink, I skate multiple laps around it until I feel comfortable and know where the turns are. To communicate with my coach, I use an ear piece; he shouts encouragement to me and instructs me on where I am on my last lap, whether I am falling behind, swaying, and whether I am off track.
In 2004, I started competing in small city-wide competitions across Ontario. Because speed skating is not a sanctioned Paralympic sport, I had to train to compete with speed skaters who did not have disabilities. At first, I would generally come out with a bronze medal so my team started to train me even harder to get me ready for province-wide competitions. I started to improve, and even ranked as the top speed skater in my age group in Ontario, winning a few gold and silver medals along the way. My team continued to train hard and in 2005 I attended my first world championship in Lake Placid. I brought home a bronze medal and ranked among the top 20 speed skaters in the world. In 2006, I returned to Lake Placid and brought home a silver medal and ranked even higher; later I attended the world championship competitions in Canada and Germany.
In 2008, Mike, my coach, got a letter from Russia with an invitation to the very first Open Blind Cup. I knew this was it, my chance to be on top. My team trained hard and in November 2009, I flew to Russia to represent Canada at the very first world championship for speed skaters with blindness. A week later, I flew back to Canada with four gold medals, four world records, and the beginning of a new movement.
The Russia Open Blind Cup opened new doors for me and helped me refocus my life goals. I knew I would never make it to the Olympics because of my disability, but what was stopping me from going to the Paralympics? Just one thing stood in my way, speed skating is not a sanctioned Paralympic sport.
With the help of student volunteers from the Algonquin College Public Relations Program, we began actively promoting my achievements in local, regional, national, and international news outlets, hoping to increase awareness of deafblind speed skating. Two volunteers, Samantha and Kristine, along with their team of Michèle and Vanessa, revamped and increased my online presence through social networks such as Twitter and Facebook. They also worked with my webmaster, Anita, to make sure the words “Paralympic speed skating” was at the forefront of speed skating conversations.
In 2011, Margarita from the Impaired Skating Organization in Scotland spotted me in the news. She sent me an invitation to the very first Impaired Skating Championship in Scotland. I flew to Scotland and competed against other impaired skaters. I represented my country with pride and brought home four more gold medals.
I continue to fight for speed skating to become a sanctioned Paralympic sport; I want to encourage others with similar disabilities to shoot for the best and never let their disability get in the way of their dreams. Like my friend Taylor, who is eight years old and competes as a figure skater at the Impaired Skating Championship in Scotland, I want them to know that their impairment doesn’t define them.
My philosophy has always been, “If someone throws you a negative, you throw a positive back at them. I am not going to give up.”
As a person who is deafblind, I have had the opportunity to live in three worlds: the hearing world of my family, the Deaf world and Deaf culture and also the Deafblind world. My involvement in sports has brought these worlds together for me; it has taught me to communicate with those who are hearing, as well as allowed me to connect with those who are deafblind and share my interests.
I first became interested in sports in high school when I began using an intervener for my physical education class. My involvement in the class allowed the high school track coach to witness my running skills for the first time. She was so impressed that she suggested I might run in the Paralympics one day. Encouraged by her words, I soon began running with my dad and then joined the track team as a junior. Not long after that, my dad and I decided to enter the Seymour Forrest 5k race in Vancouver which would lead to my involvement with the Norwester Club, a community track and field team, and the eventual start of my running career.
It is very common for people with Deafness to be uncomfortable in new situations and I faced many challenges when I first joined the Norwester Club. The first time I went into the running club, the coaches, who were all hearing, were awkward with me as they had never worked with a person who is Deaf and has low vision. I explained to them that I just needed someone to run near me so I could follow that person during races. Communicating with my hearing teammates was also a challenge, as I was often left out of their conversations. To solve this problem, my teammates wrote notes back and forth for me and used gestures and body language, which I could follow as we ran. Injury was an issue as well, and sometimes I rolled my ankle on roots on the trail; even running on the road, I sometimes fell.
As I became more involved on the team, one of my goals was to go to the Deaflympics. With practice and dedication, I eventually reached this goal, competing in Rome in 2001 in the 5k and 1.5k races. Later, I competed in the Pan Am Games for the Blind at the School for the Blind in South Carolina, racing in the 5k and 1.5k races and coming in 3rd place for the 5k. I also won a medal in a competition with other runners with deafblindness, and was featured in a story in Runner’s World Magazine.
Due to injury and my work schedule, I don’t compete anymore, but I still run for enjoyment with the North Shore Athletics Club and am involved in 10k clinics.
In 2007, one of my coaches, Frank, died from cancer. He had three important roles in my life as my coach, my teacher, and my friend. I miss him a lot and think of him whenever I run.
When I first attended the American School for the Deaf, I wasn’t sure I would like it; I didn’t want to be educated as a deaf person, but as a person. It soon became clear however that the school could provide many opportunities for me. From the very beginning, it was much easier to make friends than it had been at other schools and I had the opportunity to play on different sports teams. I enjoyed many of the sports including track and basketball, but when I started playing soccer, I found my athletic calling.
When I first joined the soccer team, the other players didn’t think I would be able to see the ball or the coach’s signals. Everyone on my team has a hearing impairment, but I’m the only one with a visual impairment as well. To help me, my coaches came up with a communication system where the other players could sign to me in close proximity on the field. The head coach made it very clear that he would not tolerate discrimination against me and he made sure I had the accommodations that would allow me to succeed on his team. There were difficulties of course. It is often hard for me to find the ball when it is in the air due to the low contrast between the ball and the background of the sky; I found that if I tracked the ball constantly throughout the game, it was easier for me to see it and this realization has helped me become a better player.
This past season, I received my varsity letter for playing a full year with the varsity soccer team. I was also honored to receive the ABC award, which my school gives out once a year to an athlete who demonstrates a good attitude and good sportspersonship. Recently, I was asked to play in my first METRO tournament, an event where a few out-of-state schools for the deaf get together and play a tournament.
Outside of school, I am an intern and group leader at Connecticut’s Educational Services for the Blind, working in their sports and recreation programs. As an intern and group leader, I help other kids learn sports designed for people who are visually impaired, as well as mentor them and help them realize their potential.
My dream for my future is that it continues to include the game of soccer. Just as college applicants have reach schools and safe choices, my safe choice is to be a college soccer star. I would also like to find a university with a strong study abroad program, which could lead to a semester in Asia.
My more distant goal is to play on the professional Italian World Cup team. I know this is not something that will be easy for me to accomplish, but I believe that if I stick with the sport and do the best I can, anything can happen.
Dance, Horseback Riding, and Running
I was born at Ellis Hospital in Schenectady, NY on August 21st, 1990. I was a hearing, seeing infant and walked before I was one year old. My first word was “dog,” which I pronounced as “gog.” As I grew older, my parents noticed that my speech was becoming worse, not better. They took me to a doctor, who told them I was deaf. This happened in 1993; a year later, I lost my vision. I am now legally blind and deaf.
When I was a little girl, about four years old, my mother sent me to a school for Irish dance. I did not wish to dance, but my mom, who was a dancer, wanted me to try it.
When I first began dancing, I was shy about performing in front of other people. My friend Erin helped me through this by acting as my eyes and ears; I watched her feet as she interpreted for me. Later, when I attended the Bolland School of Irish Dance, Erin helped me keep up with the music, which was often very fast, and stay in sync with the other girls. During those two years, I went to many competitions and consistently medaled against my peers.
Later, when I got cochlear implants, I thought I might like to take up dancing again because now I can hear the music.
I became interested in riding horses when Erin began riding them; I always loved ponies and I was sympathetic to horses because of the way they can be treated, as in the novel, Black Beauty.
I began riding at the Saratoga Therapeutic Equestrian Program (STEP); I liked it there because the staff treated me like the other sighted riders.
My favorite horse was a large gray one named Dolly. I loved to groom her soft coat and brush her silky mane before putting on her blanket, saddle, and bridle. I mounted her from the ground, rode her, and then brushed her again before putting everything away. I liked to trot and walk Dolly over logs and higher obstacles. I had other horses later, Cinnamon and Sunny (who we called Sunny Side Up). My daddy used to go with me to riding lessons and talk to the horses. He liked to pretend he was Doctor Dolittle, asking Cinnamon, “You want an apple?” When Cinnamon tossed his head, Daddy insisted the horse was nodding in reply, “Yes! I want an apple, please!”
Because I couldn’t hear my teacher, Kay, calling directions, we developed a special system for communication. When Kay tapped my leg, it meant forward. Two taps on the calf meant left, two taps on the knee meant right, and a squeeze around the calf meant halt. A tap on my back meant trot, and a tap on my arm meant circle around.
I became interested in running after meeting Maricar, the famous woman with deafblindness who ran in the New York City Marathon. At a meeting in Saratoga, New York, Maricar talked with me about her blindness and what she does to train for races. Meeting Maricar inspired me to attend a running club every Tuesday after school. In running club, we ran laps around the school. My best time was 80 seconds! I am working with Maricar now, here at the Helen Keller National Center. I have also had the opportunity to meet the runner, Marla Runyan.
Hiking the Appalachian Trail
Even as a small kid, I always dreamed of hiking the Appalachian Trail. I enjoyed hiking, and I found a quiet beauty in the mountains that I couldn’t find anywhere else. To hike the entire trail requires skill, coordination, and planning and takes the best hikers 3 or 4 months to go from one end to the other. Because I work, I was not able to do the entire trail at once but in parts.
My group of hikers was unique in that we all have a disability and we vary in skill level. Two of us, John and I, started hiking and camping regularly together years before, and could predict, with frequent reliability, what the other would carry in his pack for any given trip. We are the kind of friends who call each other brother, though there is no blood relation. We speak to each other in half sentences, not needing to finish because we know what the other is going to say. This makes for excellent communication in the mountains, where your life depends on your ability to think quickly. The third person in our group was my girlfriend Susie, a novice hiker.
This trip would be my first as a person who is profoundly deaf.
I triple checked my gear list and weighed my pack, which was 10 pounds. We packed everything from jerky to a snakebite kit; we even brought John’s excited, albeit elderly, beagle, Trail-Magic. This would be Trail Magic’s last trip in the mountains, but he seemed determined to live up to his name.
We picked up John on our way, stopping in Virginia at a natural spring. The spring is a favorite location of ours for refilling our water sacks; Trail-Magic enjoys splashing in the water. The town is known for its springs and has everything from bathhouses to dog pools, as well as a slew of kids willing to pet a dog. Trail Magic lapped up the attention. Conscious of the time, and the tendency for the sun to dip below the horizon early in the mountains, we climbed into the truck.
Upon arriving in the mountains, we looked for a campsite that would fit our needs. We needed trees that were at least 12 feet apart, leaving enough room for our hammocks to hang comfortably. I could smell that rain was not far off; sudden storms pop up often in the mountains. We needed to set the hammocks up with tarps or everyone would be sleeping wet. On overnight hikes, we use Brazilian style hammocks that are made of a solid sheet of material with ropes on the ends, allowing the camper to hang them from trees or poles; these hammocks were our only luxury. They have built-in mosquito nets, ripstop bottoms, and pockets for holding gear and are designed specifically for hiking. They also come with extra line for tarps.
I sniffed the night air and wondered why my audiologist hadn’t mentioned that my hearing aids would buzz in the mountains. When I finished hanging the hammocks, I set up our gear inside the tent and put Trail-Magic to bed. We knew from previous experience that if he wasn’t in the tent a little after true dark, he would bark at everything and everyone. In the mountains, away from city noise and buildings, his barks carry quite a distance, disturbing campers more than half a mile away.
We made dinner, ate and did a quick check of our food stores. Our campsite provided a steel bear locker, and we made sure to clean the skillet and the table and to stow away the dishes to keep away night time intruders. Then it got dark. In the mountains, deep under the trees, away from city lights, true dark is complete blackness. The occasional camp lantern or headlamp shined passed our table as campers walked to the bathrooms nearby. The stars lowest in the sky winked out leaving only the moon to guide us back to our beds. We all bedded down for the night, talking companionably until we fell asleep.
A rainstorm fell and I dreamed I was lying under a waterfall.
I woke later to warm sunshine and a delightful breeze, the rainstorm of earlier having dissipated. The smell of bacon and eggs wafted over from the campfire, and eager for coffee, I jumped up.
We decided to leave from the lodge for the falls. It would add some hike time to our trail, but put us near some awesome cliffs. Susie packed our backpacks, while John packed his. It’s customary for another experienced hiker to go through the packs of less experienced campers or to run through a general check list before the group leaves base camp. That way, nothing important gets left behind, but I was so excited I forgot the usual procedures.
We took it slower than usual at first; with my deafness, I was not confident about jogging this time around, as John and I had not developed a system of silent cues yet with which to communicate. Trail-Magic was eager to run however, so we sent John ahead to scout out spots, which might present trouble for Susie or me. We used two-way radios to keep in contact.
At the top of the first mountain, we stopped for food and drink. Opening the packs, I found some Tang®. This is a must-have for me on the trail, because I often get dizzy and cranky without food and have passed out before. John and I even trained our dogs long ago to recognize the signs.
As we got to the steeper parts of the trail, I discovered that hiking with Susie was a bit daunting for me. I was used to the way John and I hiked; I would latch onto his pack, or he’d put me in front, grabbing me for support. With Susie, I felt anxious because the cues I was used to with John were not there. I was getting hungry though and checked to see what Susie had packed for lunch. I searched the top pockets, and then the outside pockets of our pack. No lunch.
Both of us turned to Susie with equal parts panic and frustration on our faces.
"Nobody said to pack any. I just thought…" she didn’t finish.
John’s eyes met mine in silent reproach; it wasn’t her fault; we should have checked. Out loud he said to Susie, "We have a three hour hike out. If you have more Tang®, mix it up stronger than normal now."
We began to climb back, in an attempt to get as much ground covered as possible before we got too tired to walk. As we hiked, the surroundings seemed to fade in and out for me, almost as if I were dreaming. I caught my boot on a rock and fell, waking up a few minutes later to Trail-Magic shaking me by my shirt.
Susie tried to keep me awake by asking me questions, but I was too drained to keep my eyes open for long. John and Trail-Magic ran back for food and help.
When I woke again, I felt Trail-Magic’s teeth gripping the front of my shirt once more, his side packs full of food. I fished out jerky and began to eat.
Safely back at the campsite, we tore down base camp and walked around to our favorite spots one last time, before heading back to “the real world.” I couldn’t help but smile. Susie leaned casually against the truck, a red pen in one hand and a rather large check list in the other. The last thing on the list to go in the truck was the food. She starred it.
Since taking this trip, I have lost a significant amount of hearing and vision. We would love to kayak around Alaska and we want to hike a volcano in Hawaii. Of course, we want to keep visiting our favorites such as the Shenandoah Valley in Virginia, Parker Dam in Pennsylvania, and Mosquito Lake in Ohio. Our current goal is to figure out new and interesting ways to use camp equipment to improve communication for people with vision and/or hearing loss and to develop ways to assist these hikers during steep climbs.
*Tang® is a registered trademark of Kraft Foods, Inc.
I was born with hearing loss and, as I grew up, slowly became deaf; as a teenager, I began to lose my vision. Later, as an adult, I discovered a love of travel, and have been taking international trips for several years now. I recently traveled with a friend to Southeast Asia; we bought a guidebook published by Lonely Planet and took off.
Because we were unfamiliar with many of the Southeast Asian languages, we were forced to improvise and be spontaneous in many situations along our trip. There were maps everywhere, but they weren’t usually in English, so we had to figure things out for ourselves, showing the map to local people so they could show us where to go. Many of the restaurants had English menus, but if it was difficult to communicate, we wrote notes. If the people around us could not read or write English, they asked other people to read our notes for them and together we found a way to communicate.
We visited many countries in Southeast Asia including Thailand, Cambodia, Vietnam, Laos and Nepal. I kept a notebook and filled it with the conversations we had with various people along our trip. Our favorite country was Vietnam; there were two towns in Central Coast Vietnam, Mui Ne and Hoi An, that had absolutely beautiful beaches, cozy bungalows, and fresh coconuts every day. It was in Vietnam that I learned how to wind surf, had a jacket custom-made for me, and took all-day cooking classes. The colors, the people, the culture, and the art were all amazing!
Before our cooking class, we spoke with the teacher and asked for less talking and more demonstrations so we could understand what was going on in the class. He gave us the recipes for each day’s class and showed us where we were in them. The rest of the group didn’t mind our requests, and a four-hour class became a seven-hour class.
My only trouble was that I could not use my cane on the uneven streets, so I had to put it away. I had some bruises by the time our trip was over, but the experience was well worth it.
I am hard-of-hearing and have acromatopsia, which means I have difficulty seeing in bright light. I use sign language and voice for myself and have always been active as a runner particularly in college. Right after college, I got a job that often left me tired and stressed so my supervisor, a former Marine, encouraged me to start running through the summer. We ran together until he left for another job. Recently, through a social network at work, I have found a new running partner who is willing to run with me 2 to 3 times a week, and the experience has helped me pay better attention at work, reduced my stress, and allowed me to find a friend with a common interest.
Running with a new partner wasn’t easy and I had to teach my new friend many things about deafblindness and how to guide me; we have developed signs similar to bike signals so he can warn me about obstacles, and keep me aware of other cyclists. We run about 2 miles in 15 minutes and it is like a warm-up for the day and feels good like morning coffee. We run in the morning so that we do not have to worry about traffic; there is also less sunlight in the morning, and there is no food in our stomachs to slow us down. I like to find paths that are light in color as it is easier for me to see and I like to choose areas that I am familiar with where the roads are clean and the sidewalks clear. When we come to areas where kids are waiting for the school bus, we cross the street so we don’t have to worry about running into them.
I would like to find a partner who is willing to do a 5k and a marathon with me. I know that as long as I am comfortable with myself anything is possible. My only barrier is finding someone who can keep up.
Ice Hockey and Taekwondo
Sarah K. McMillen
I grew up in Albany, New York, and attended a mainstream school in Albany; I am deaf and also have Usher syndrome. After high school I attended Hudson Valley Community College (where I became interested in ice hockey) and later The College at Brockport.
While attending Hudson Valley, I spoke to a speech teacher who told me about a women’s ice hockey league. She was in the hockey league as well and volunteered to interpret for me when I joined the team. I enjoyed playing hockey very much and the women on the team were friendly and helpful. When my friend wasn’t available to interpret for me, my teammates and I wrote notes back and forth to communicate.
Later, when I attended The College at Brockport as a Health Science Major, I joined the women’s hockey team there. The women’s team was a club team while the men’s team was a varsity team which meant that our team did not have priority at the rink and that our practices were late in the evening. Some of the women on the team learned sign language in order to communicate with me directly, and we wrote notes back and forth.
In a game as fast paced as ice hockey, it can be difficult to scan the environment effectively, but I persevered, playing hockey for four years. The proudest moment I had was when I participated in a team effort to make our team a successful one.
I was six years old when my parents signed me up for classes at a Taekwondo school. There were other students who were deaf in the class and the staff learned some sign language so that they could communicate with us. We communicated using demonstrations and observations. A few years later, I became a first degree black belt. I took a break shortly after that, but in 2009, I started classes again and received a purple belt. With the collective effort of interpreters during practices and meets, and some friends who learned sign language, I won first place in the form competition.
I am Deaf and have Usher syndrome and am currently the director of the Deafblind Service Center in Seattle, Washington.
Carolyn, my partner, told me about a wonderful event called “The Big Climb,” which is a large fundraiser in Seattle, Washington that raises money and awareness for blood cancers. A woman associated with the event asked people who were visually impaired or deafblind to join as a team and raise money. Each team member was to run up the stairs of a tall building, 1,311 steps high (69 flights and 788 feet of elevation).
I started training the following November near my home using a long flight of stairs. I began slowly, running up the stairs four times, and then gradually increasing my speed. Then, in December, I joined a gym and began using the staircase machine. In addition, I used swimming to increase my cardiovascular endurance.
By the day of the race, we had gathered a large team of 15 people some of whom were hearing and sighted, and others who were deafblind. Each of us was timed on the ascent with a chip timer; this is a timer that is placed around your ankle to keep official track of your start and stop time. My time, at the end of the race, was 17 minutes. I felt so excited just to finish!
The event raised 1.6 million dollars.
Scott Keeler Bass
I was born Deaf and as a young man became blind due to Usher syndrome. As a child, I enjoyed golfing and riding my bike, often riding to the driving range in the summer to practice golfing. When I was 19, I lost my vision and had to stop riding temporarily.
A few years later, I attended the Helen Keller National Center and learned about tandem biking; the experience inspired me to buy a tandem bike and to start riding again. At first, I only rode locally, but the more I road, the more I wanted to ride further. I took a three-day trip with my friend Cliff to Port Townsend to a Deafblind camp and later a bike trip with my friend, Bob.
Bob and I rode a tandem 195 miles from Seattle, Washington to Portland, Oregon using sign language to communicate as we rode. By the end of the trip, I was proud of what Bob and I had accomplished together. My advice for others who are Deafblind is to practice as much as you can and be prepared to reach your goals.
Maria Marquez Dykman
Growing up, I attended the Florida School for the Deaf and it was there that I developed a passion for art. Then, at the age of 33, I lost my vision.
Prior to losing my vision, my best friend taught me how to make wind chimes. It was difficult at first, but I was a quick learner and became quite accomplished at making them. When I became blind it became even more difficult, but I found I could rely on feeling rather than sight.
I continue to make wind chimes with my best friend. Our goal is to start a business and sell them and we have even set up a website. I love teaching children as well, and in the future, I would love to teach children how to make wind chimes.
If you love art and want to be successful don’t let your visual impairment or hearing impairment stop you. You just have to feel it and be patient.
Participation in recreational and physical activities is an important part of life and can be especially important for people who are deafblind. Benefits of regular active recreation can include improved cardiovascular function, better ability to sleep, increased stamina, and an increased sense of wellness. The lasting message of this collection of stories is universal: with the right attitude, motivation, and help from those who believe in you, the possibilities for an active life are endless. Three major themes present themselves throughout these stories: Challenges, Perseverance, and Togetherness.
The theme of Challenges is explored throughout the stories. Maricar is determined to successfully complete the swimming portion of a triathlon, while Kristen, her SSP, provides the support she needs. Bruce challenges himself to travel independently throughout Asia. Faye sets a goal to play on a national soccer team after college and challenges herself to achieve it.
Perseverance is another theme present in these stories. Each individual has a goal which takes perseverance to achieve. Kevin has to overcome the loss of his family and his “dream job” only to lead a movement that may someday bring speed skating to the Paralympics. Ryan perseveres against communication barriers to reach his recreational goals.
The third theme, evident throughout the stories, is Togetherness. Each writer in this collection has someone supporting them along their journey. Corrina’s ballet teacher, Michelle, demonstrates how an instructor’s interest and willingness to make accommodations can substantially increase a student’s self-esteem and self-determination. Kristen and Emily also show how togetherness and the desire to help a friend achieve a goal can make what seems impossible possible.
For those who have had the privilege of knowing, educating, or befriending someone who is deafblind, these stories show many examples of how one can modify activities to meet the recreational needs of a person who is deafblind. For young people who are deafblind or for those who simply want to try something new, the stories show examples of people who are deafblind overcoming obstacles and breaking down barriers in order to participate and succeed in recreational and physical activities. From Maricar’s triathlon to Kevin’s speed skating to Cody’s power lifting, the individuals featured in this collection persevered, took on challenges and, with a little help from their friends and family, showed themselves and others that anything is possible.
American Association of the Deaf-Blind. (2012). Support service providers (SSPs): An introduction. Retrieved from www.aadb.org/SSP.html
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