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Blog Articles in Category: Deaf Culture

Raising Deaf Children From a Foreign Land

Raising Deaf Children From a Foreign Land

Deaf Culture   |  Wednesday, May 2, 2018

By John Miller

The DNA heredity companies are very popular right now. Every time you turn on the television you see a new touching commercial of how people’s lives have been changed. While watching a recent commercial, there was a woman who, all her life, thought she was primarily from one genetic background and her ancestors came from one place and lived her life accordingly. However, after getting the results of her DNA test, she realized her ancestry really was from a totally different part of the world. The commercial ends showing her standing in front of a mirror wearing the ancestral clothing of her "new" native country and embracing and celebrating her new found information about herself.  

This got me thinking about deafness. I wish more people could have this reaction when they first find out that their child is deaf. Unfortunately, many in the medical field approach deafness from what is known as the Medical Model and see it as a disability that needs to be fixed, rather than a part of an ancestry that needs to be explored, learned and cultivated. 

This may stem from the often unknown fact that over 90% of deaf and hard of hearing children are born into families that are NOT deaf themselves. This is not common knowledge to many people. When I have posed the question to my sign language students and families I’ve worked with over my career as an educator, many believe that the percentage of deaf children that are born to hearing families is low, like 3-5%. I think their thought process is that the hereditary gene of deafness is the major factor in determining a child’s deafness. That is not, however, accurate. 

The families that make up this over 90% are busy with their lives and most likely have many other things going on like work, schooling, raising other children, etc.. so when a child with a different "genetic background" enters their family, it can seem like an unexpected challenge. Often times this child requires another language to be brought into the home. Things may have to be taught and communicated in a way that is different from what has traditionally been done in this home. It doesn’t mean it can’t be done.  It just means that extra time and effort and systems are going to have to be put in place so this uniquely different child can still be a part of their biological family, as well as the child’s "ancestral Deaf family."

Many of these hearing families aren’t familiar or educated on Deaf culture and don’t realize it has a rich history, customs, and community. Just as the woman in the DNA commercial put on her "new" ancestral clothing at the end of the commercial, families can education themselves on Deaf culture and choose to embrace and celebrate it.

 

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Living Loud: Ella Mae Lentz - Poet, Educator, and Advocate

Living Loud: Ella Mae Lentz - Poet, Educator, and Advocate

Deaf Culture   |  Friday, April 20, 2018

By Marta Belsky

This article is by Marta Belsky. Marta is a third generation ASL user. She has been teaching ASL for 30 years and enjoys sharing her native language with new users.

Ella Mae Lentz is a Deaf American poet, author, educator and advocate. She was born on May 5, 1954 in Berkeley, California to two Deaf parents and has one Deaf brother. In 1971, Lentz graduated from the California School for the Deaf in Berkeley (now known as the California School for the Deaf in Freemont), and went on to Gallaudet University. She graduated from Gallaudet in 1975 with degrees in English and Drama. 

ASL Poet, Performer, and Advocate

Lentz is widely known for her ASL poetry. Many people have studied her poems and have even performed them as reproductions. Some of her original poetry has been published in the video “The Treasure: Poems by Ella Mae Lentz.” A few examples of her poems can be found on YouTube, including The Door (1995), The Rosebush (2008), and To A Hearing Mother (2010).

Lentz was on a talk show titled “Silent Perspectives” in 1974, on television in the Public Broadcasting Service (PBS) children’s show “Rainbow’s End” in 1979, a Milwaukee Repertory reproduction of the movie “Children of a Lesser God” in 1980 as character Sarah Norman, and on video with Baker and Cokely’s ASL curriculum commonly referred to as “The Green Books.”

“Instead of looking at what deaf people can’t do, we need to look at ourselves as people who are visual, and who have a community, we need to look at ourselves in a very positive view to confirm who we are as deaf individuals.”
     - Ella Mae Lentz

Lentz has also done hundreds of presentations around the country on ASL, Deaf Culture and Deafhood. At one presentation, Lentz is quoted as saying “Instead of looking at what deaf people can’t do, we need to look at ourselves as people who are visual, and who have a community, we need to look at ourselves in a very positive view to confirm who we are as deaf individuals.” This quote is also representative of her many works of poetry, which focus on bringing Deafhood to the forefront in mainstream American culture as well as Deaf Culture to bolster a sense of community and pride associated with being Deaf. She helped to found the Deafhood Foundation in February 2009 and continues to be on the board of directors. Her goal is to encourage people (hearing and Deaf) to look at Deafhood as an identity based on visual capacity rather than the inability to hear. Lentz also promotes examining traditional definitions of community, ability, relationships and communication that at the same time challenge perspectives of American history related to Deaf people and culture. For example, her interpretation of the National Anthem takes a very direct and personal stance toward American Deaf people that places the focus on Deaf struggles and victories in American history.

Terminology

Deafhood - Deafhood is a Deaf person's unique personal journey to discover and understand themselves as a Deaf person. The term was coined by Dr. Paddy Ladd and was described in an article in Gallaudet Today in 1993. Ladd later wrote a book on the subject in 2003, called Understanding Deaf Culture: In Search of Deafhood.


Educator

Although she is a well-known ASL performer and author, teaching has always been at the core of Lentz’s career and influence. She has over 30 years of experience in academia. She has done research on ASL at many institutions, including: Gallaudet, Northeastern University in Boston, Salk University in San Diego, and the University of California in San Francisco. She also has taught at multiple institutions; Gallaudet University, Ohlone College in Freemont, California and Berkeley City College until her retirement in 2007.

Lentz has developed educational and training material for ASL such as: the National Consortium of Programs for the Training of Sign Language Instructors (NCPTSLI) and the Signing Naturally curriculum series. The NCPTSLI came as a result of a Federal grant program with the National Association of the Deaf with the goal of upgrading ASL instruction, and for two years, Lentz developed and tested curricula and recruited and trained instructors. The Signing Naturally curriculum series started with a three year grant through Funds for Improvement of Post Secondary Education to develop curriculum for teaching ASL as a second language. Her work on the Signing Naturally curriculum continues today.

Advocacy Continues

After retiring from teaching, Lentz formed the company ASL Presents in 2007, which offers services in coaching, consulting, presentations, performances, and ASL and Deaf Culture curriculum. She continues to be an advocate for ASL, Deaf Culture, and Deafhood.

Lentz is married to her longtime partner, Judy D. Gough. The couple has raised five children, of whom the youngest is Deaf. They also have ten grandchildren, of which three are Deaf. They love animals and have had dogs, cats, llamas, a goat, rabbits, rats, a mouse, and iguanas.

For more information on what Lentz is currently working on, visit the ASL Presents website.

Resources

 

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About the Author

Marta Belsky Marta Belsky is a third generation ASL user. She has been teaching ASL for 30 years and enjoys sharing her native language with new users. Marta is on the Lansing Community College Interpreter Training Program Advisory Board and has also been a board member for the Michigan Registry of Interpreters for the Deaf and the Michigan Chapter of American Sign Language Teachers Association.

More about Marta  |  Articles by Marta

Debbie Wright's Story: A Journey of Discovery with Usher Syndrome and Being Deafblind

Debbie Wright's Story: A Journey of Discovery with Usher Syndrome and Being Deafblind

Deaf Culture   |  Monday, June 26, 2017

By Kathleen Marcath

This article is by guest blogger Kathleen Marcath. Kathleen has a BA in Deaf Community Studies and is passionate about helping students and families make connections through American Sign Language.

While in the company of friends seeking a cure for blindness at a VisionWalk luncheon held by The Foundation Fighting Blindness (FFB), Debbie Wright and her mother Joan candidly share their personal story - their choices, the learning, denying, and accepting the reality of living with Usher syndrome and being Deafblind. This is Debbie Wright's story, as told by Debbie and her mother Joan - a journey of discovery with Usher syndrome and being Deafblind.

An Important Question: Can Debbie Hear?

Debbie Wright as a baby.
Debbie Wright as a baby. (Source: Wright Family)

For Debbie Wright, the diagnosis of her hearing loss would take nearly ten months at the persistence only of her mother. Her mother, Joan, was a special education teacher observant and intuitive in working with blind children. Joan clearly remembers the day Debbie was born, her third child, along with the events before being released from the hospital.

It was June 1969. After a normal delivery, the customary hospital stay was three days or more. Debbie was brought in for feeding after delivery; she was lying on the foot of Joan’s hospital bed. Suddenly a food tray crashed to the floor in the hallway, startling everyone, but not Debbie.

Joan was puzzled. Joan shared her concern with Debbie’s dad, Richard. Richard assured her, they had two children at home who could hear just fine, naturally their third child could hear also. Each day in the hospital, Joan kept a watchful eye on Debbie’s responses to sound. Debbie was not underweight and did not present any other reason to suspect that she might have a hearing loss that would warrant medical concern. However, before leaving to take Debbie home she had convinced the doctor to perform a hearing screening.

The audiogram for Debbie was performed in Joan’s hospital room. Joan recalls, "the tools were primitive." The room was noisy with loud banging and the slamming of doors. Nonetheless Debbie’s hospital audiogram recorded "normal" hearing.

Causes of Hearing Loss in Newborns

About 2 to 3 out of every 1,000 children in the United States are born with a detectable level of hearing loss in one or both ears.

More than 90% of deaf children are born to hearing parents. About 1 out of 2 cases of hearing loss in babies is due to genetic causes. Some babies with a genetic cause for their hearing loss might have family members who also have a hearing loss. However, it’s important to note that less than 10% of children born deaf are born to deaf parents.

About 1 out of 3 babies with genetic hearing loss have a “syndrome.” This means they have other conditions in addition to the hearing loss, such as Down syndrome or Usher syndrome. It’s reported that 1 out of 4 cases of hearing loss in babies is due to maternal infections during pregnancy, complications after birth, and head trauma. For about 1 out of 4 babies born with hearing loss, the cause is unknown.


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Joan’s concerns were disregarded at Debbie’s wellness checkups. Each visit the doctor performed his own little hearing test concluding "hearing grows." He would explain Debbie was fine and say maybe the next month they would see nothing is wrong with her hearing, it’s normal.

Finally at three months of age Joan convinced the pediatrician Debbie was not hearing like she should. The doctor sent Debbie to an audiologist. The audiologist evaluation consisted of one primitive test - a demonstration for a group of residents. She shook a rattle while moving it around Debbie’s face. Debbie responded! Joan instantly declared, “I know, she can see!” Leaving the appointment with no more answers than she had before, Joan continued to perceive her child could see, but was not responding appropriately to sound. Joan made more appointments, asked more questions, until the medical professionals heard her.

An extended stay of five days at a local hospital was recommended to investigate and identify Debbie's audio abilities. An audiologist and specialist working with hard of hearing infants prescribed a hearing aid. After more visits a second hearing aid was ordered for Debbie. Her mother’s intuition was right; finally, at ten months of age, Debbie had not one, but two hearing aids. Debbie was born with a congenital hearing loss, meaning the loss occurred before birth, and she was profoundly deaf.

Example Audiogram
This is an example of an audiogram. An audiogram is a graph that shows results of hearing tests. This example shows the typical hearing level (level of loudness) and frequency (low to high pitch) of different items. With normal hearing, the softest sounds heard are between -10 and 25 dB. If sounds are louder than 25 dB and they still can’t be heard, then there is some degree of hearing loss. The term “Speech Banana” is used to describe the area on the audiogram where phonemes (sounds of human speech) are typically heard. (Sources: Signing Savvy, American Academy of Audiology, and Phonak)

With a profound hearing loss, a child receives very little auditory information. A speech banana provides a clear picture of sounds identifying frequency in hertz and the intensity in decibels. Debbie’s hearing loss at ten months of age was 95 decibels. Amplified sounds heard with hearing aids are not the same as normal hearing. The Wrights wanted Debbie to learn to speak since they all spoke. Debbie’s education began immediately.

Early Hearing Detection and Intervention

Interestingly, it was also the year Debbie was born, in 1969, that the Joint Committee on Infant Hearing was formed by a team of people in audiology, otolaryngology, pediatrics, and nursing to make recommendations for early detection of hearing loss. The importance of identifying congenital hearing loss during the first few months of life has been recognized since the 1940’s. However, it was difficult to implement programs for identifying hearing loss during the first few months of life until effective newborn hearing screening equipment and procedures became available in the late 1980s. The Joint Committee on Infant Hearing is an advocate for Early Hearing Detection and Intervention.

Early Hearing Detection and Intervention refers to the practice of screening every newborn for hearing loss prior to hospital discharge. Infants not passing the screening receive diagnostic evaluation before three months of age and, when necessary, are enrolled in early intervention programs by six months of age. All 50 states and the District of Columbia have Early Hearing Detection and Intervention laws or voluntary compliance programs that screen hearing.


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A Mission to Help Debbie to Speak: Immersion into Oral Education

Debbie’s dad penned an article in the Detroit Magazine, "Debbie Will Talk: The Education of a Deaf Child and Her Parents."  He wrote, "Since my wife and I and our two older children hear, it is natural that our overriding concern is that Debbie learned to speak, to communicate with the hearing world." The Wrights utilized every source available to achieve their goal to have Debbie speak. They joined the Greater Detroit Association of Oral Education of Hearing Impaired. They looked into the Alexander Graham Bell Association for the Deaf and Hard of Hearing. They sought out the Spencer Tracy Correspondence Course for Lip Reading. They utilized the Detroit Day School for the Deaf, Detroit Medical Rehabilitation Center and programs offered by Wayne State University.

Article: Debbie Will Talk: The Education of a Deaf child and her parents
Article: Debbie will talk: The education of a Deaf child and her parents (Source: Scanned article provided from the Wright Family. Citation: Wright, D. (1972, March 12). The Detroit Magazine / The Detroit Free Press.)

Debbie Wright as a child.
Debbie Wright as a child. (Source: Wright Family)

Debbie was immersed into an oral program at home and once a week Debbie, at ten months of age, attended an auditory training program. With Joan’s professional training as a special education teacher, she knew, "Debbie was not dumb; she just had a problem hearing." Joan labeled everything in the house for Debbie. The furniture, doors, lights, toys, anything and everything was tagged with written words. At eighteen months old, Debbie attended a weekly oral program at both the Detroit Day School for the Deaf and Detroit Medical Rehabilitation Center.

With great joy, Joan told about the day her toddler responded to the word "BALL." Joan had said, “Debbie, go get your ball.” For the first time Debbie understood the motion or movement of a person’s mouth, their facial expression and body language all had meaning. Joan was pleased that Debbie was walking by age two. By age three Debbie attended all-day preschool. She did not learn any sign language in preschool. Joan remarked, "Some of the older kids signed a little. It was an oral program where Debbie was being taught to speak."

Debbie Wright as a kid.
Debbie Wright as a kid. (Source: Wright Family)

Debbie and her family broke ground for special education in the mainstream program and full-day kindergarten. Debbie was mainstreamed before a structure for mainstreamed education was understood. Joan recalls Debbie’s kindergarten IQ tested at 145, she was a very bright child. Debbie attended Detroit Day School for the Deaf for morning kindergarten classes in an oral program. In the afternoon she went to a regular kindergarten classroom in the public Grosse Pointe Schools. There Debbie was included in class with the hearing world (this practice, when children with special needs are educated in regular classrooms, is called mainstreaming).

The U.S. Department of Education began to realize a shift in education for special needs children. Half-day kindergarten was the model of education until recent years, then full-day kindergarten had become the new standard. The Education for All Handicapped Children Act of 1975 passed when Debbie was six years old. Over the years more acts were passed to improve the education provided for children classified as handicapped. Today IDEA, Individuals with Disabilities Education Act 2004, is in place in our public school system.

It’s important to note members of the Deaf community do not consider deafness a handicap or disability. A study entitled Deafness as Culture explained, "On the one hand, deafness has historically been viewed as a physical impairment associated with such disabilities as blindness, cognitive, and motor impairments. On the other hand, views on deafness as a culture have recently emerged that consider deafness as a trait, not as a disability" (Jones, M. A. (2002, Spring). Deafness as Culture: A Psychosocial Perspective. Disability Studies Quarterly, 22(2), 51-60. Retrieved 5/30/2017 from http://dsq-sds.org/article/view/344/435).

Special Education Laws

Public Law 94-142: The Education for All Handicapped Children Act (EHA) of 1975

Public Law 94-142, also known as The Education for All Handicapped Children Act of 1975, was passed November 19, 1975. “P.L. 94-142 guaranteed a free appropriate public education to each child with a disability. This law had a dramatic, positive impact on millions of children with disabilities in every state and each local community across the country.” Congress amended and renamed this law several times after it was enacted.

Individuals with Disabilities Education Act (IDEA)

Congress renamed The Education for All Handicapped Children Act (P.L. 94-142) in 1990 to The Individuals with Disabilities Education Act (IDEA). “The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.”


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Children and youth who are profoundly deaf are eligible for programs and services mandated by IDEA. In the process each child has a written plan to meet their educational needs. The written plan is their Individualized Education Program (IEP). Together a team discusses the best practices for each student; an IEP is drafted to satisfy their special needs to an equal education. There is tremendous debate over the programs and services that best serve Deaf children in the mainstream school system. The Wrights agreed on an oral program for Debbie who was about to face even a greater challenge, losing her vision.

A Diagnosis: Confirmed Usher Syndrome

The nerve cell damage that caused Debbie's profound hearing loss was only half of her worries.  At age seven Debbie's parents learned she also had RP or retinitis pigmentosa. Joan and Richard were devastated and determined it wise to spare Debbie the anxiety of knowing she would become blind until she was fourteen years of age. Even after telling Debbie she, "would be losing eye sight," it did not fully sink in until she was in her late twenties.

It was at a VisionWalk Kick‐off luncheon that I interviewed Debbie Wright. She had a favorite interpreter with her. Debbie requested the interpreter voice for her and sign for me; I was a student learning sign language at the time. The three of us sat in a little circle that put both the interpreter and me in Debbie’s narrow window of sight. Throughout the interview Debbie kept her focus on communicating with me as her interpreter voiced the communication.

Debbie described the first time she realized she was really becoming blind. She began with a deep breath and a slight cringe, "I had been at the mall, I ran straight into a lady!" Using classifiers while signing, Debbie illustrated casually strolling through the mall, enjoying the day, minding her own business, when suddenly she was face to face with a woman.

The interpreter relays Debbie’s story, "I walked straight into her, I never saw her. The woman was shorter than me. Before I realized she was there, I walked smack into her, and nearly knocked her down."

Leaning back, slightly pausing, she closed her eyes but for a moment. No interpreter was needed to understand the communication, "I felt so bad."

Debbie had come face to face with the brutality of Usher’s syndrome, "I went home and cried."

Then without hesitation or further remorse she affirmed, "I accepted that I was going blind. I started using a white cane."

Compassion let a tear well up and in the next breath admiration for her bravery, her strength of character to accept a cane. Two of her five senses were damaged by a recessive inheritance pattern; Usher syndrome was running her life and Debbie had no voice in the matter. Debbie did have a choice to not give up, count her blessings, and move forward.

About Usher Syndrome

One third of genetically based hearing losses are syndromic, which are associated with abnormalities. The combination of progressive vision loss and hearing impairment are known as Usher syndrome according to The Foundation Fighting Blindness:

“Usher syndrome is passed from parents to their offspring through an autosomal recessive inheritance pattern. In this type of inheritance, two copies of a mutated gene, one from each parent, are required for the child to be affected. A person with only one copy of the gene is a carrier and rarely has any symptoms.”

The Problem with Nerve Cells and Photoreceptor Cells

According to The Foundation Fighting Blindness, the mutation expresses in the nerve cells of the cochlea, which is responsible for sound in the inner ear. The damaged nerve cells cause sound to never reach the auditory nerve and send the audio message to the brain. Children may be born completely deaf, have moderate to severe hearing impairment or be born with good or mild hearing impairment, depending if the infant has Usher syndrome type 1, type 2 or type 3.

The photoreceptor cells or the rods and cones, in the back of the eye, are responsible for converting light into electrical impulses. These electrical impulses then transport the visual message to the brain. Retinitis pigmentosa is generally not realized until adolescence or early adulthood. The first symptoms of RP are night blindness and peripheral vision loss. As the rods and cones degenerate the visual field becomes progressively smaller. There are many genetic variations responsible for nerve cells and photoreceptor cells to malfunction. This and much more information can be found at www.blindness.org.


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A Reason to Celebrate: Educational Achievements

Achievement! Debbie’s educational experience was never lacking of ample success. She achieved high grades while in Parcells Middle School in Grosse Pointe Woods. Debbie earned a 3.8 grade point average. At age 14, Debbie was awarded a Certificate of Achievement from the Council for Exceptional Children, from Reston, Virginia. Joan saved the article from the Free Press, “Debbie transcends her silent world” celebrating her achievements and the award that was presented to her by her school.

Article: Debbie transcends her silent world
Article: Debbie transcends her silent world (Source: Scanned article provided from the Wright Family. Citation: Goldberg, S. (1983, July 7). Debbie transcends her silent world. The Detroit Free Press.)

Attending Grosse Pointe North High School, Debbie won a Detroit Free Press writing contest and the nickname, “Kid with the Wright stuff.” While her sense of sight and sound were limited, Debbie had an amazing sense of humor joking, “I have both senses of humor, blind and deaf.”

Article: Kid with the Wright Stuff
Article: Kid with the Wright stuff earns Wayne State bachelor's degree (Source: Scanned article provided from the Wright Family. Citation: (1993, January 14). Kid with the Wright stuff earns Wayne State bachelor's degree. Inside Wayne State.)

After high school, Debbie attended Madonna University where she quickly learned sign language. Joan remembers she practiced non‐stop. Signing everything and anything entering her senses, including closed-captioned television. Debbie had found the power of a spatial-visual language to gain information quickly and effortlessly. Joan said early in Debbie’s life that she was a very bright girl, "she just couldn’t hear like we do." Madonna University’s program for Sign Language Studies is structured for students to gain fluency while earning a bachelor’s degree. In two years, she had learned ASL. Debbie quickly became a fluent signer.

The quest for knowledge continued, taking Debbie to the Helen Keller National Center for Deaf-Blind in a program for youth and adults. This was a new experience for Debbie, being away from home. She was twenty years old. Classes began in June and by November Debbie was ready to come home to be near family.

Debbie ventured out again to Hofstra University in Hempstead, New York. Here she was again in a mainstream environment and the only Deaf student. This time though, Debbie had a new language that she loved, but no one to communicate in ASL with her.

Article: Kid with the Wright stuff earns Wayne State bachelor's degree
Article: Kid with the Wright stuff earns Wayne State bachelor's degree (Source: Scanned article provided from the Wright Family. Citation: (1993, January 14). Kid with the Wright stuff earns Wayne State bachelor's degree. Inside Wayne State.)

Eventually, Debbie followed the rest of her family in attending Wayne State University - where her father had become a Professor and the Program Director for the Journalism Department. Then fluent in ASL, Debbie was pleased that the office of Wayne State Handicapper Educational Services provided her with interpreters. Debbie and Joan confirmed that finding qualified interpreters in the early 90’s was difficult. Wayne State continued to provide interpreters, seeking ones who were qualified and the best match for Debbie. The “kid with the Wright stuff” earned a bachelor’s degree in Psychology. In an article in the Inside Wayne State paper the students, staff, and professors had all come to know Debbie and admire her positive outlook. She affirmed, “Don't grieve for what you’ve lost, rather appreciate what you have and who you are, how you are.”

“Don't grieve for what you’ve lost, rather appreciate what you have and who you are, how you are.”

- Debbie Wright


Debbie’s family congratulated and celebrated with Debbie every step along her journey. Attaining a Masters Degree in Rehab Counseling from Wayne State University gave her an advantage. Her family was especially proud that after graduation Jewish Vocational Services hired her as a caseworker.

A Curve Ball: Life’s Challenges

The Cochlear implant (CI), a surgically implanted electronic device to simulate hearing, sometimes fails! At forty-one Debbie got a CI. Joan was a big advocate for Debbie to get the Cochlear implant, hoping it would help her to communicate with the family.

While Joan has taken sign language classes, sign language has not come as easily for her or the family as it did for Debbie. Joan genuinely wanted her daughter to hear her voice, talk to her and with her; that was her expectation for the CI.

In anticipation of Debbie hearing, Joan offered, "We work with the Cochlear implant to learn environmental sounds, but the Cochlear implant is not giving her speech sounds. Debbie needed the Cochlear implant at age two, but it was not available to us then."

Debbie shared, "At forty-one I got a Cochlear implant. It was not successful." She affirmed as a matter of fact, "It should have allowed me to at least tell the difference between a dog barking or a car going down the road. But I can’t hear."

Describing the sensations of her Cochlear implant Debbie shared, "I feel vibrations through my eyes, but it was a failure. I wish I had not had the surgery. I am not wearing it now."

To Debbie the CI was like one of the numerous hearing aids her mom wanted her to wear, "She had me wear so many different hearing aids over the years." Debbie simply preferred not to wear hearing devices of any kind, ever.

There are numerous factors to consider when contemplating a Cochlear implant. As Debbie and Joan learned, they do not always work. The problem of a CI that is ineffective, is not the only concern for individuals who have an electronic Cochlear implant.

Since our interview Debbie experienced a medical situation that required her to have an MRI. A patient implanted with a Cochlear implant cannot undergo an MRI. In order for Debbie to have the needed MRI she had to first undergo surgery to have the implant removed. After the CI was removed Debbie could have the needed MRI. Then another surgery was required to replace the CI. At a later date, Debbie had a fourth surgery to permanently remove her Cochlear implant. All residual hearing is destroyed when a CI is removed. Debbie’s communication is gathered in silence without a sound, sensitive to vibrations, feeling the movement around her she absorbs information through diminishing sight, is there a chance Debbie’s vision can be restored?

An On-Going Discovery: Finding Help and Hope

At a VisionWalk for The Foundation Fighting Blindness
At a VisionWalk for The Foundation Fighting Blindness (Sources: Sara Develbiss, Foundation Fighting Blindness; Kathleen Marcath).

The search for a cure for retinal degenerative eye diseases began before Debbie or her family knew she would ever benefit from a cure. It was 1971 when Gordon Gund established The Foundation Fighting Blindness (FFB). The Eastern Michigan Chapter had been established and in 1991 Joan became the chapter President. Joan emphatically praises FFB for recognizing the problem, offering hope and pressing in to find a cure for retinal degenerative eye diseases. The foundation provides valuable information on eye diseases, research updates, low vision resources, and networking opportunities. Through local chapters and national conferences FFB members stay informed, connected, and actively living a full life, rich with purpose.

Joan along with millions of parents, children, family members and friends participate each year raising funds, keeping an eye on the cure. Over the years the foundation evolved and created VisionWalk. VisionWalks are held throughout the United States to raise awareness and funds for critical research.

Debbie’s Perspective

The VisionWalk luncheon was complete as guests shared stories and began parting, but I had a few more questions for Debbie. When asked further about her thoughts she was clear, "Yes, I hope FFB with VisionWalk will find a cure. I believe they will do that in my lifetime. That is very exciting!"

Debbie responded about her desire to see, "Absolutely! But I am fortunate that my vision has stayed the same for about thirteen‐fourteen years now. That is a very good thing."

Her response was a little different when asked if she wished she could hear.

Affirmatively she signed as the interpreter reiterated her message, "No, if I were born black would I want to have surgery to change my skin color? Do something to change me into another color? No!"

After a slight pause with deep conviction and a passionate manner she continued, "That is ridiculous, that would not be who I am. I am Deaf. That is who I am, and I do not, and would not, want to change that."

Having fully expressed her position on who she is, she glanced at the guide dog resting on the floor next to her and reached down, petting him with a smile, "I have my guide dog, Pete."

Pausing a moment she continued, "The biggest frustration in my life is communication, obviously with hearing people."

Debbie set up the interview in such a way that her "voice" through the interpreter would be heard clearly and directed to the person she was in communication with, that being me. Through this interview I realized the brilliance Debbie possesses. In setting up everyone’s role and position in the interview she had subtly made the point to include all parties in the conversation, leaving no one out, as so often happens to Deaf people in a hearing world.

As I paused to reflect, Debbie continued signing and the interpreter voiced, "I think I had a great education in the Grosse Pointe School System. I would not want to change that. I would not have liked going to a residential school."

Debbie concluded, "I do wish I had learned sign language when I was younger."

I thanked Debbie for so candidly sharing the personal details of her life feeling very humbled by the experience and thankful for the opportunity to share who Debbie Wright is.

Joan’s Perspective

I asked about looking back, would you change anything? Joan replied, "I never would have considered sending Debbie to MSD (Michigan School for the Deaf in Flint). She needs to be in a hearing world, we are all hearing."

She quickly added, "Do over? I would go to Madonna to learn sign language earlier in life, now I have arthritis and I’m slow."

With all life challenges surmised for Debbie, Joan’s concern for her daughter is felt in saying, "Debbie fits in with the Deaf community, but she does not drive, transportation is an issue."

Clarifying the reason for permanently removing the CI, "We decided to have the CI removed because Debbie was not getting sounds in her ear--only vibrations in her eye."

Joining the FFB and serving as Michigan Chapter President, Joan’s family worked together for a worthy cause. They met lifelong friends, engaged with a community of passionate people with a common goal. Like Debbie, Joan is very hopeful that restoration of vision is coming soon. That would be the tremendous blessing for Debbie.

A Happy Life: Life is a Choice, New Every Day

Debbie and Joan Wright
Debbie with her mother Joan. (Source: Wright Family)

Currently, Debbie serves on the board for Deaf C.A.N. Debbie’s guide dog Pete died a couple years back. Sophie has stepped in as Debbie’s new guide dog, a faithful and constant companion, absolutely a source of joy. She continues to work at Ascension Medical Center - St. John Providence in the medical education department. Sophie joins Debbie on the bus going to work, going wherever she goes. Debbie hears without sound through a small window of vision, the motions and vibrations of life are gathered providing information about the world around her. Joan and Debbie communicate well together as loving moms and daughters do. Joan continues to offer and provide encouragement and support for her daughter.

Thank you so much Debbie for being true to yourself, and for your profound attitude of appreciation for what you do have. Thank you for inspiring the world with your unquenchable thirst for learning and tenaciously pressing in to achieve all that you have. I want to thank you for being open and candid, affording me the privilege to share your story with all people who are Deaf and blind and hearing. An old adage says, it takes a village to raise a child. Together with your mom, the village has learned it takes perseverance and a love for life that never gives up to carry on in spite of the challenge of Usher syndrome and being Deafblind.

Joan began the conversation mom-to-mom telling me about her affiliation with The Foundation Fighting Blindness (FFB) and her hope for her daughter to see, to hear, to communicate. I greatly admire and respect Joan for who she is as a mother who loves her daughter to the moon and back. Thank you Joan for sharing your journey, the trials, the disappointments and the torch of hope you carry to light the way to a brighter future for sons and daughters, for families and the future free from deafness and blindness.

Debbie and Joan are passionate about The Foundation Fighting Blindness (FFB) and encourage anyone interested in being an advocate for the Deafblind to participate in a VisionWalk or support the The Foundation Fighting Blindness (FFB). They are hopeful that a cure for blindness is in sight.

 

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About the Author

Kathleen MarcathKathleen Marcath has a BA in Deaf Community Studies and is passionate about helping students and families make connections through American Sign Language. Kathleen has the privilege to work with hard of hearing students providing sign language support, building vocabulary, confidence and community. She strives to create an atmosphere that promotes harmony, excellence, exploration and certainly fun. In establishing ASL Educational Services – Making Connections she is helping people tap into their potential and and the hidden potential of American Sign Language. Currently, Kathleen serves as President for the Michigan Chapter of the Foundation Fighting Blindness. If you are interested in creating new possibilities for yourself, your family or your school, Kathleen can be contacted at ASLMakingConnections@gmail.com.

More about Kathleen  |  Articles by Kathleen

Deaf American Jazz Singer and Songwriter Chooses to “Try” After Hearing Loss

Deaf Culture   |  Saturday, June 10, 2017

By Jillian Winn

Mandy Harvey starting singing when she was four. She sang in choral groups and music competitions in high school and she was recognized as the "Top Female Vocalist" at Longmont High School when she graduated in 2006. Mandy was then one of only fifteen students accepted as a vocal major into Colorado State University. However, Mandy suffered from reoccurring hearing problems and during her freshman year in college she lost hearing (110 decibels) in both ears. Doctors believe her hearing loss was caused by a genetic connective tissue disorder exacerbated by medications used during knee surgeries.

After her hearing loss, Mandy was discouraged and left Colorado State University to take a break from singing and return home to Longmont, Colorado. She started taking classes at the local community college in American Sign Language and Elementary Education. Although she stopped singing, she continued to play the guitar with her father. Encouraged by her father, she began to work on learning the lyrics to "Come Home" by OneRepublic. She discovered she was able to read the music and sing in key, which motivated her to not give up on signing.

A visit with one of her former college music professors in 2008 also helped revive her music passion and got her connected to the jazz scene at Jay’s Bistro in Fort Collins and she began performing there regularly for several years. She then began having regular concerts at the Dazzle Jazz Lounge in Denver (one of the top 100 Jazz venues in the world). In 2011, Mandy won the VSA’s International Young Soloist Award and has performed at the Kennedy Center in Washington, D.C. several times.

Mandy is an ambassador with the non-profit No Barriers, an organization that helps individuals with disabilities and wounded veterans overcome the obstacles they face in their day to day lives. She wrote the song Try because "After I lost my hearing, I gave up. But I want to do more with my life than just give up.” Watch this video of Mandy auditioning for the T.V. show America’s Got Talent and singing her song Try.

Video Transcript

Note: Captions are available on the video (click the CC button), but they aren’t entirely accurate. For example, they say "death" instead of "deaf" and "beach" instead of "beat." We are unable to change the captions since the video was published by American’s Got Talent, but we have contacted them with this feedback and included a transcript of the video below.

COWELL: Hello.

HARVEY: Hi! How are you?

COWELL: And what’s your name?

HARVEY: Mandy Harvey

COWELL: And who’s this?

HARVEY: My Interpreter

COWELL: What’s your name?

SARAH: Sarah

COWELL: Nice to meet you Sarah.

SARAH: Nice to meet you sir, doing well thank you.

KLUM: Hi Sarah.

SARAH: Hello.

COWELL: Ok Mandy, so I think I’ve worked this out. So you’re deaf?

HARVEY: Yes, I lost all my hearing when I was 18 years old.

COWELL: Wow, and how old are you now?

HARVEY: 29, so it’s 10 years.

COWELL: Wow

COWELL: And Mandy, how did you lose your hearing, if you don’t mind me asking?

HARVEY: I have a connective tissue disorder, so basically I got sick and my nerves deteriorated.

COWELL: So you were signing before you lost your hearing?

HARVEY: Yeah, I’ve been singing since I was 4. So I left music after I lost my hearing and then figured out how to get back into singing with muscle memory, using visual tuners, and trusting my pitch.

MANDEL: So your shoes are off because you are feeling the vibration. Is that how you’re following the music?

HARVEY: Yeah, I’m feeling the tempo, the beat, through the floor.

COWELL: And Mandy, what are you going to sing?

HARVEY: I’m going to sing a song I wrote called Try.

COWELL: Okay, can you tell me what it’s about?

HARVEY: After I lost my hearing, I gave up. But I want to do more with my life than just give up.

COWELL: Good for you.

HARVEY: Thank you.

COWELL: Good for you. Well look, this is your moment, and good luck.

HARVEY: Ok

[Clapping]

[Music]

Mandy Harvey singing:

I don’t feel the way I used to
The sky is grey much more than it is blue
But I know one day I'll get through
And I'll take my place again

If I would try, if I would try

There is no one for me to blame
cause I know the only thing in my way
Is Me

I don't live the way I want to
That whole picture never came into view
But I'm tired of getting used to
The day

So I will try, so I will try,

If I would try, if I would try

[Clapping]

COWELL: Mandy, I don’t think you’re going to need a translator for this…

[Cheering, Clapping]

BROWN: Wow

COWELL: Hey, you sing incredible. I mean, I’ve done this a long time, that was one of the most amazing things that I’ve ever seen and heard.

HARVEY: Thank you so much.

COWELL: That was amazing. Amazing.

MR. HARVEY: Thank you.

COWELL: Congratulations.

COWELL: Honestly, I never think I’m going to be surprised or amazed by people, and then you turn up. I mean, just the fact that you are you, but it was your voice, your tone. The song was beautiful. Congratulations you are straight through to the live show.

COWELL: Mandy, you know what, we found each other.

HARVEY: Yes.

[Music]

[Applause]

Bravo Mandy! We’re glad you decided to "Try," so we could see your love and passion for music!

Resources

  1. America’s Got Talent. (2017, June 6). Mandy Harvey: Deaf Singer Earns Simon's Golden Buzzer With Original Song - America's Got Talent 2017. Retrieved 6/9/2017 from https://www.youtube.com/watch?v=ZKSWXzAnVe0
  2. Mandy Harvey. (n.d.) Wikipedia. Retrieved 6/9/2017 from https://en.wikipedia.org/wiki/Mandy_Harvey
  3. No Barriers. (n.d.). Mandy Harvey. Retrieved 6/9/2017 from http://www.nobarriersusa.org/people/mandy-harvey/

 

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Living Loud: Lou Ferrigno – The Incredible Hulk of acting, bodybuilding, fitness training, and motivational speaking

Living Loud: Lou Ferrigno – The Incredible Hulk of acting, bodybuilding, fitness training, and motivational speaking

Deaf Culture   |  Monday, October 24, 2016

By Marta Belsky

This article is by Marta Belsky. Marta is a third generation ASL user. She has been teaching ASL for 30 years and enjoys sharing her native language with new users.

Lou Ferrigno is an actor, retired professional bodybuilder, fitness trainer, motivational speaker, and deputy sheriff.1 He is most well-known for portraying The Incredible Hulk, but has been in over 35 movies and 65 television shows,4 won the bodybuilding titles of Mr. America and Mr. Universe (twice), and is a Guinness Book world record holder.1

Growing Up: Challenged by Hearing Loss

Lou Ferrigno as a child
Lou Ferrigno as a child. (Photo Credit: Lou Ferrigno Website)
Louis Jude “Lou” Ferrigno was born in Brooklyn, New York on November 9, 1951. Soon after he was born he suffered from a series of ear infections, which caused him to lose 75% of his hearing.1 This hearing loss was not diagnosed until Ferrigno was 3 years old and he began wearing hearing aids at age 4. The hearing aids only helped improve his hearing marginally. He learned to understand what others were saying by lipreading. He said because “aids weren’t as advanced in those days, I developed very defective speech. That was harder to deal with than the hearing loss, because people assumed I was dumb when they heard me talk. I had difficulty making myself understood. That’s why I didn’t talk much, just enough to get what I needed.” 3

He went to public school and said his dad “made sure that at home I spoke the best I could, and he never gave me special attention. He treated me as though I was normal and my brother and sister accepted me that way. Dad was determined that I be normal, even if I wasn’t. That’s why I had to work twice as hard at everything.” 3

He couldn’t hear when he was in class, but was too shy to ask any of his teachers if he could sit up front where he could hear and didn’t let anyone know about the problem. He tried to isolate himself from his classmates. 3 “They used to call me ‘deaf Louie,’ ‘deaf mute,’ because of my hearing and because of the way I sounded.”5 He was teased and bullied, sometimes resulting in schoolyard fights that he would lose.7

Getting Pumped Up: Inspired and Determined to Be Strong

He was skinny, small, and introverted.5 He turned to comic books for comfort. “I felt devastated and emotionally insecure. I would just read the comics and it would give me inspiration and hope.”7 Superman and The Incredible Hulk were his favorites. After pretending to be Superman by putting on a red blanket as a cape and jumping off of the second story of his apartment, he hit the cement hard and decided Superman wasn’t his favorite anymore.5 He thought of the Hulk as “the green Santa Claus” because of his instinct to protect the good.7 Ferrigno also liked the Hulk because he was obsessed with the feeling of being powerful.5 “I wanted to be so strong, so invincible so I could command the same power the Hulk does... and that’s how that connection began.”7 He then made it his mission to be strong as well.

Lou Ferrigno at bodybuilding competition
Lou Ferrigno at a bodybuilding competition with Arnold Schwarzenegger. (Photo Credit: Lou Ferrigno Website)
At age 13 Ferrigno started weight training. Bodybuilder and Hercules star, Steve Reeves, was one of his role models.1 Before he could afford his own set of barbells, he made one out of a broomstick and cement weights.2 Ferrigno won his first major bodybuilding titles as Mr. America and Mr. Universe in 1973, at the age of 21. His Mr. Universe title was, and still is to this day, a Guinness Book World record for the youngest person to win the Mr. Universe title. Ferrigno competed for the Mr. Olympia competition in 1974 and got second place.1

Ferrigno worked throughout his early bodybuilding career as a sheet metal worker in a Brooklyn factory. He did not enjoy this dangerous work. He left after a friend and co-worker accidentally cut off his hand. Ferrigno left the competition circuit for a period that included a brief stint as a defensive lineman for the Toronto Argonauts in the Canadian Football League. However, he had never played football and was cut after two games.1

Living a Childhood Dream: Becoming The Incredible Hulk

In 1977 television producers started to seek the right person to portray the larger-than-life comic book superhero, “The Incredible Hulk.” They were interested in Ferrigno for the part because he was the biggest professional bodybuilder at that time with his 6’5”, 285 lb. frame. When Ferrigno heard about the role he said, “It’s mine,” and wanted the part more than anything.5 He auditioned for the part of the green-skinned Goliath and he won it over another well-known bodybuilder, Arnold Schwarzenegger.1

The Incredible Hulk turning over a car.
The Incredible Hulk turning over a car. (Photo Credit: CBS, The Incredible Hulk, Season 2: Episode 3 "Ricky" [Originally Aired: October 6, 1978])
Ferrigno was a hulk in real life as well. He has told the story of moving a parked car out of its spot and onto the street so he could make room to park his Volkswagen.2 Another account happened while on set of The Incredible Hulk, where Ferrigno worked long, 16 hour days. He was supposed to flip a car with the aid of a steel cable lift, but it had broken. He was exhausted and annoyed about still being on set at 4 a.m. and didn’t want to wait for a new cable. He told them to start shooting and tilted the car up off the road and pushed it down the embankment, and that was a wrap for that shoot!7

Ferrigno continued playing the Hulk role until 1981. The Incredible Hulk was a huge ratings success and spawned several TV movies after the initial TV series completed. 1

After playing The Incredible Hulk for 5 years, Ferrigno went on to be in over 35 movies and 65 television shows. He followed in the steps of his role model Steve Reeves and starred in Hercules (1983). He has played himself in Surge of Power (2004), I Love You, Man (2009), and the CBS sitcom The King of Queens (2002-2007). He was a competitor on reality TV show The Celebrity Apprentice (2012), where he raised $50,000 for his charity, the Muscular Dystrophy Association. He has also been in multiple documentaries, including Pumping Iron (1977) and Stand Tall (1997). He has performed as the Hulk in 6 TV shows and voiced the Hulk in the movies The Incredible Hulk (2008), The Avengers (2012), and Avengers: Age of Ultron (2015).4

Today: Still Focused on Health, Conquering Challenges, and Being a Real-Life Hero

Ferrigno family
The Ferrigno Family: "The First Family of Bodybuilding" (Photo Credit: Lou Ferrigno Website)
Ferrigno is married to psychotherapist Carla Green, who also was his manager. She later became a personal trainer herself. They live in California and have three children – Shanna, Lou Jr., and Brent. Fitness has always been a family activity and now that their children are grown up, they are also involved in the health and fitness industry. They call themselves “The First Family of Bodybuilding.” Ferrigno has been a personal trainer for Michael Jackson, Mickey Rourke, Chuck Norris, and others. He continues to do private training, as does his children Lou Jr. and Shanna. Ferrigno believes the key to health is a balance between mind, body, and spirit. Together, he and his daughter Shanna started Ferrigno FIT – a brand and community focused on healthy living.1, 8

Ferrigno continues to be a motivational speaker and has been a spokesperson for the Better Hearing Institute for 25 years and a supporter of the Starkey Hearing Foundation. He tells others to try being the best of themselves in life, no matter what problems they might face along the way.2 He says his hearing loss presented him with a challenge in life and his journey has been filled with ups and downs, but you can’t be a quitter. “I believe the maxim that you only get out of life what you put into it. I found my courage to persevere because I don’t believe in defeat. I am a survivor, and I love challenges. I always say either yes or no, never maybe. And I don’t use the word hope. I either do it, or I don’t do it; I don’t hope to do it.”3

"I don’t use the word hope. I either do it, or I don’t do it; I don’t hope to do it."

  - Lou Ferrigno

Ferrigno on duty
Lou Ferrigno, San Luis Obispo County Sheriff Deputy. (Photo Credit: Lou Ferrigno Website)
Ferrigno has joined forces with several law enforcement agencies, including becoming a reserve sheriff deputy for Los Angeles County, California in 2006, a volunteer member of the sheriff posse for Maricopa County, Arizona in 2010, and a reserve peace officer for the San Luis Obispo County sheriff’s office in 2012. Ferrigno has dedicated 20 hours a month to the San Luis Obispo County sheriff’s office since 2012. It’s not an honorary post. Ferrigno attended the police academy in southern California, is certified, and has police authority. Ferrigno said, “I'm very happy to be a real-life hero, protecting life and property.”6

Resources

  1. About Ferrigno. Ferrigno Ferrigno. Retrieved 10/17/2016 from http://louferrigno.com/pages/about-us
  2. Borrelli, Anthony. (2010, April 22). ‘Hulk” motivates SUNY Cortland students: Strongman speaks to audience of 400 about his career, making most of what you have. Cortland Standard. Retrieved 10/17/2016 from http://www.cortlandstandard.net/articles/04222010n.html
  3. Ferrigno, Ferrigno. (1981, February 9). No Longer Silenced by Hearing Loss, the Hulk Debuts in a Speaking Role. People Magazine. Retrieved 10/17/2016 from http://people.com/archive/no-longer-silenced-by-hearing-loss-the-hulk-debuts-in-a-speaking-role-vol-15-no-5/
  4. Filmography. Ferrigno Ferrigno. Retrieved 10/17/2016 from http://louferrigno.com/pages/filmography
  5. Ferrigno Ferrigno. Oprah: Where are they now? Retrieved 10/17/2016 from http://www.wherearetheynow.buzz/first-look-how-lou-ferrigno-became-the-incredible-hulk/
  6. (2014, November 21). Ferrigno Ferrigno: Volunteer reserve SLO County sheriff's deputy. KSBY NBC 6. Retrieved 10/17/2016 from http://www.ksby.com/story/28680324/lou-ferrigno-volunteer-reserve-slo-county-sheriffs-deputy
  7. Pioneers of Television: Ferrigno Ferrigno. Public Broadcasting Service (PBS). Retrieved 10/17/2016 from http://www.pbs.org/wnet/pioneers-of-television/pioneering-people/lou-ferrigno/
  8. ‘The Incredible Hulk’ Ferrigno Ferrigno on Marriage and Family [video]. Huffington Post. Retrieved 10/17/2016 from http://www.huffingtonpost.com/2014/01/29/lou-ferrigno-bullied-bodybuilding-hulk_n_4676191.html

Top Graphic Photo Source: Demolition Man. (2013, September 24). Lou Ferrigno: The Incredible Legend [Video]. YouTube. Retrieved 10/17/2016 from https://www.youtube.com/watch?v=dQJCpKwbqWU

 

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About the Author

Marta Belsky Marta Belsky is a third generation ASL user. She has been teaching ASL for 30 years and enjoys sharing her native language with new users. Marta is on the Lansing Community College Interpreter Training Program Advisory Board and has also been a board member for the Michigan Registry of Interpreters for the Deaf and the Michigan Chapter of American Sign Language Teachers Association.

More about Marta  |  Articles by Marta

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