Breaking the Sound Barrier.
Editor's Note: This month, Exceptional Parent is proud to welcome Jo Waldron to the Editorial Advisory Board as well as to present her story as our featured Role Model.
Jo Waldron has known the struggles of dealing with disabilities throughout her entire life. She had polio at the age of three. Later that year she was diagnosed as having a "hearing loss." At the time, this generic term was used to describe all levels of hearing loss (she is profoundly deaf). Through the years, she has overcome the many obstacles associated with not being able to hear and with the effects of post polio. In 1998 she was diagnosed with a major illness and while hospitalized, she developed adult respiratory distress syndrome (ARDS). She was on life support for three and a half months and spent two years in rehabilitation.
Jo was always the person in the community who helped anyone with a problem, especially those with disabilities. Most of the problems seemed to involve employment. Job security was something that Jo has never taken for granted. She never had any. "I can't tell you how many jobs I no longer had once my employer found out that I was deaf, even though my job did not involve the use of a telephone," says Jo. "I was told that they had to save their jobs for "normal" people, and that I should let Welfare take care of me. These employers were better than those that said," I can't have freaks working for me." Jo didn't let any of this get in her way.
She decided to do something about the way people with disabilities were treated in the workplace. "I decided we needed to do a job fair for people with disabilities so that the fears of hiring people with disabilities would be eliminated. I presented my concept to a friend at Texas Instruments. He loved it, and the first of these job fairs was born." She is personally responsible for over 6,000 people with disabilities being hired in positions ranging from janitor to engineer.
Goodwill Industries of America knew about Jo. They appreciated her efforts and achievements on behalf of people with disabilities. In 1987, as a result of their nomination, President Reagan appointed Jo Waldron Disabled American of the Nation. He also presented her with the nation's highest honor--the President's Trophy.
She was selected from thousands of Americans across the nation to receive this honor, which is awarded to a civilian who has not only overcome his or her own disabilities, but has helped to provide a better life for other Americans with disabilities.
Jo has since represented several presidents and all Americans with disabilities at over 1,200 speaking engagements. She has worked closely with the cabinet members of various presidential administrations, the US Senate and Congress, the FCC, the Air Force, Army, and Navy, the US Department of Labor, the Veteran's Administration, and numerous other elected and presidentially appointed officials. She was involved in the creation of the American's with Disabilities Act (ADA), the Civil Rights Act of 1991, and Section 255 of the Telecommunications Act of 1996. In 1991 she was appointed by Chairman Harold Russell as the Chairman's Appointee to the President's Committee On Employment of People With Disabilities, serving as its primary speaker for many years.
Growing up--speaking up
Jo Waldron grew up in a small town in Kansas during the 1950s. No one in town had ever known a person who was deaf. It was a time when parents warned their children to stay away from "people like Jo Waldron" lest they should "catch it" from her. Her parents were from a generation that hid the fact that a person had a "handicap." Jo was often told that she would probably hear better if she would only try harder. She was also encouraged to hide the fact that she wore a hearing aid and not to make it obvious when she was lip reading.
Jo's parents never truly grasped the severity of her hearing loss (she doesn't even register on an audiogram). They wanted so much to believe that because she was fitted with a hearing aid at the age of three, she would be able to hear better as she grew older. The truth is that Jo has never heard more than five or six sounds, and then only on occasion.
They did, however, try to give her as "normal" a life as possible. She took guitar lessons and piano lessons. The most important thing they did, however, was to start Jo in speech therapy when she was four years old. She promised herself that if God would let her learn to speak, she would speak and speak loud and clear for all those who could not and that she would be heard.
Her mom would go to school with her at the beginning of each year and "teach the teacher" how Jo needed to be taught. Her mother could not help the fact that the teachers resented the extra time that they had to spend with Jo. She could not control the lack of sensitivity that the teachers, and therefore, the other children displayed towards her. One teacher made Jo write any word that she mispronounced on a 5x7 card and wear it around her neck on a string. At times more than fifty cards would hang around her neck. The kids kept trying to make her say something in hopes that yet another card would be hung around her neck. Though her speech was difficult to understand (she was learning how to say words without the benefit of sound), she always understood what was being said. The teachers and the other children, how ever, talked about Jo right in front of her. They failed to realize that Jo was (and still is) a phenomenal lip leader. She saw every word they said!
Jo was the youngest of five children and there was a twenty-year difference between her and her oldest sister. So it was Jo's sisters who taught her that she had value in life--that she had to keep trying and that everyone was good at different things. They taught her sports and she excelled in almost all of them. They encouraged her to pursue her interest in art and most importantly, they taught her to stand up for herself.
When she graduated high school, her choice of colleges was easy. There were not many that would accept a person who is deaf. The hardships continued there. Jo was able to understand and do well by reading her textbooks. She could not participate in class, however, because the professors would often turn to write on the board or face a different part of the room, making it impossible for her to read lips. The school's answer to Jo's problem was to provide her with a tape recorder so that she could tape her classes! Jo lasted through the beginning of her junior year. One day she walked into the administration offices, told them how she felt, and left.
College did do a lot of things for Jo. She made her first friend, had a roommate, and fell in love. Jo and Sam met in her freshman year. They got engaged and then Sam went off to Vietnam. He was seriously wounded and returned to spend the next year in the hospital. They were married when Jo was 19. Through the years, it turned out that Sam's emotional wounds were as severe as his physical ones, and they were finally divorced. Since Sam did not behave as a father, Jo raised and fully supported her three sons on her own.
Working toward access
As she raised her sons, Jo faced the added challenge of getting and keeping a job while contending with the barriers that were presented because of her disability. She took certification courses in employment and labor relations and became a success in the business world as a human resources specialist, having worked with numerous companies from start-ups to well established, very successful companies.
Jo states, "In my role in human resources, I spent a lot of time talking about hiring people with disabilities. The more I learned about the lack of understanding of employment of people with disabilities the more I knew that I had to do something. I decided to take a stand. I joined up with United Way, along with my children, and we made hundreds and hundreds of speeches and a film promoting the United Way agencies that helped people with disabilities." This, together with the job fairs that Jo had put together, educated hundreds of employers and opened up thousands of jobs for people with disabilities.
On being an exceptional parent
Jo's sons were very fortunate to have her as their mom. They learned a lot by her example. They saw what she did for others, and they saw what she did for them. Two of Jo's sons have disabilities. One was diagnosed as bipolar, had seizures and learning disabilities. Another has a fluctuating sensorineural hearing loss. One minute he would hear perfectly and the next minute he would experience a profound hearing loss.
Another was gifted, which brought a host of problems, too. After her experiences at school, she vowed never to let her boys go through what she went through. She was a very outspoken parent, keeping up on all of the laws and services that were available to her boys.
Jo says, "Upon finding out the diagnoses of the disabilities, my attitude was that, based on all I had been through personally, the boys could not have a better teacher ... nor a better advocate. I had a choice; I could either be an exceptional parent or have a "special" child. It was a given that I would become an advocate for my children--Lord knows I had been one long enough for myself! I also felt that it was one thing for the schools to have done what they did to me, but they were not going to do that to my children! It was my job to teach them the skills that they needed to make it in life, and to be accepted in society. I wanted to teach them to stand tall and be the best that they could be and not to be a "special" child, but an exceptional one."
At first the school administration and the teachers saw Jo as overzealous because of the fact that she herself was "disabled." They eventually came to realize that she was just like every other parent who wanted the best for her children. She even moved at one point when it was obvious that the school's plans for her youngest son were not negotiable in their eyes and definitely not acceptable in hers.
She states, "I wanted my sons to grow up and know that each of them was a whole person. They were spectacular in my eyes, as they were my children, but I wanted them to know that to be spectacular in their own eyes required them to stand tall and to be the best that they could be. Whether that was in school, in their jobs, as a son, as a brother, or as a friend!"
"The school experience was now starting all over again. This time, however, I was standing up for my kids. Now, they had support, they had resources (not as many as today, but they had programs in place), and they had me! I remember one meeting where the teachers were telling me all the things that my seven year-old son, Chris, was not able to accomplish. They said this right in front of him! They also stated that considering my own severe disability, I should understand the challenges they faced in educating him.
"I picked up my son and stood him on the table (the teachers were all sitting on little chairs at the table). I looked him in the eye, and preceded to talk to him. I told him how proud I was of him. I told him about all the things that he could do. How good his drawings and art were. I talked about his sensitivity to people around him, how he shared what he had with his friends, how he cared so much about how people felt. I reminded him of how he helped me with my work by putting papers in the right files by the letters, and how he helped me at home. I told him he was one of my heroes ... because he would not give up. I told him that yes, he got frustrated with having to do things over so many times, but that he always kept trying. Then I told him that his teachers had a problem. Their problem was they didn't always think before they opened their mouths. They didn't think how much words could hurt and that I knew how hurt he was by all that they said he could not do. I told him that was their disability. They just didn't think all the time, but, I felt sure that they would never, never do this to another little boy, and that we should give them the chance to do things right, just like he needed the chance to do things over at times, because he did not remember them just right. I asked him if we should give them another chance. Chris said yes."
I then looked at the teachers. They all had tears in their eyes. I told them that it amazed me how hearing people seemed to have the greatest difficulty in listening. I told them that I had dealt with teachers like them for a long, long time and I would be at the school every single day if I had to be, but that my child's needs would be met, the easy way or the hard way. The choice was theirs. I told them that I was not impressed with anyone who left out `human' in theft teaching experience. They apologized (to both Chris and me), we got to work, and we made lots of progress on Chris's behalf that year."
Jo believes that to be an exceptional parent, you must know all there is to know about your child's rights ... and your own. The laws do not mean much if one doesn't invoke them when really needed. She set out to become even more educated on what those rights were and what services were available. She was appalled at the lack of laws defining rights and more importantly access. She started to become involved with different agencies in learning all that she could and doing all that she could.
"I cannot begin to tell you all that I have gone through with teachers, schools, testing parameters, etc. on behalf of my sons. I can tell you this: I would do it again in a minute. Why? Every component helped shape my sons lives, and the people they have become. Just as every component that happened in my life, shaped the person that I am.
"My youngest son, Michael, has a fluctuating hearing loss. He reads lips as well as I do. He landed the job of football manager with the varsity coach at high school. When he was being presented his letter at the banquet, the coach kept talking about my son being psychic. My son would always know what he needed, even if he was half way down the field. Afterwards my son told his coach that he wasn't psychic, he was hearing impaired. It was by reading his lips that he knew what the coach needed all the time. He asked his coach to remember in the future `that it is always about what you could do, not what you couldn't.' That was an incredible moment in being an exceptional parent. It is truly moments like that when you realized that you have succeeded."
One more challenge
Although Jo achieved success and overcame many attitudes towards people with disabilities, there was still another barrier she needed to tear down. Through all of her hardships and all of her joys, Jo was never able to communicate using a regular telephone. This caused a great deal of frustration- in emergencies, the workplace, and in everyday life. She had to wait to see someone to share the joys and excitements or ask advice or discuss a problem. She couldn't call home to check on her boys when she was at work or away. She couldn't call for help in an emergency. Jo will never forget the day when she came home from school and found her father on the floor suffering from a stroke. She tried to call for help. She picked up the phone dialed for an ambulance, repeated the information five times, and hung up, hoping that somebody heard. Then fearing that no one had, because maybe the line had been busy, she ran the mile to the hospital to get him help.
She could not access telecommunications. She knew there were many products and technologies for people with hearing loss to use with a telephone. She also knew that she could not hear and understand clearly on any of them, and that others with moderate to profound hearing loss had the same problem, even though they used a hearing aid. This frustration became a motivator for Jo and finally led her to where she is today.
Jo is a founder and the chief operating officer of New World Sounds, Inc. (NWSI) which was created to develop and manufacture technology that would allow people with moderate to profound hearing loss to access communications and telecommunication systems. Jo is a co-inventor of the WorldStar[TM] micro technology that allows people with moderate to profound hearing loss to hear on a telephone. "I knew what was out there in the marketplace, and I knew what did not work and WHY it did not work," says Jo."I then went about the process of finding a means that would solve the problem of providing heating access for people with moderate through profound hearing loss."
The WorldStar technology is installed in a handset of the NWSI telephone. It allows a person with a hearing aid (any type or brand with a t-coil), to hear using this telephone.
Jo states, "We designed our telephone so that it does what I need it to do. It has a large, bright flashing light that tells me when the phone is ringing AND thanks to our invention, I can actually hear clearly on it, with no wires or cables."
The WorldStar technology is also available in a hands-free system so that a person with a hearing aid can use a cell phone. This device has totally changed Jo's life. She can now speak to anyone, anytime, from anywhere and she feels safe knowing that she can call for help in an emergency.
The WorldStar technology has also been installed in an earphone system to allow access to the sounds of computers, CD players, AM/FM stereo systems and any other audio/visual equipment that has a standard earphone jack. With the help of the technology, Jo can enjoy listening to music, and has been able to greatly improve her speech since she can now hear how words should sound. As she says, "It now takes me seconds to learn what would have taken me months." The NWSI products are currently being announced to the general public and to the telecommunications and communications industries for inclusion in their line of products and services.
The last word
Jo Waldron has kept the promise she made all those years ago. She has spoken for those who could not and maybe even for those who would not. She is also well on her way to keeping another promise-one that she made to herself when she was an adult: that no child with a hearing loss will ever have to grow up the way she did.
Jo Waldron may be contacted, by telephone, at New World Sounds, Inc. (203) 748-5596 or by e-mail at email@example.com.
Grace M. Scire was an attorney for over 15 years. She has been a member of and speaker for numerous state, national and international organizations that strive to better the lives of people with disabilities. She has worked closely with Jo Waldron on many disability issues. She has closed her law practice and is the President/CEO of New World Sounds, Inc.
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|Author:||Scire, Grace M.|
|Publication:||The Exceptional Parent|
|Date:||Mar 1, 2001|
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