It is a great honor to have been asked to be here today and be able to join my friends, colleagues, and partners here at the NCDBA conference. Thank you Bud for asking me here tonight. My name is Sharon Giovinazzo and I am the Vice President of Programs and Services at RLCB (Raleigh Lions Clinic for the Blind).
I’ve had the honor of addressing many audiences, with my keynote speech named “Each journey begins with just one step”, but I came to realize that this one would be very different. First, my audience is different and that’s because you are better. But second, my focus is different.
See my previous keynotes have always focused on just my vision loss, I would touch on a hearing loss, but never go into detail. In fact it was not until very recently that I have came to realize that I have entered into a realm like no other.
I was no longer just Sharon Giovinazzo a person who was lost her vision because of multiple sclerosis, but I am now a person, who after loosing all of her vision, also began to loose hearing, and now the person that now has joined the ranks of people who are Deaf-Blind.
So truly my journey is beginning all over again, and this will be the first step of that journey, but hopefully i can tell you that story, and i hope that you can relate to that story in some way and maybe get to know me a little better. I’m in the process of learning and writing this new chapter and I am asking that you join me.
I noticed the theme of the conference this year is technology. I have came to realize that technology has allowed me to transition from a sighted hearing person to someone very different.
Today I am hopeful that I can share my journey and show you how technology not only helped me begin my journey, but how it in fact gives me the roadmap for that journey.
So please join me for, “Each Journey Begins with Just one Step”
“Hello darkness my old friend”. This is a familiar line from a Simon and Garfunkel song that I never thought would become my life’s song.
I was never able to imagine a world filled with darkness, totally void of light. When I was a child I would sleep with a nightlight that would give a warm amber glow; or I would have a flashlight tucked under my mattress, just in case the lights went out.
I did not view darkness as my friend; there were things that went bump in the night, things that I could not see.
As an adult, I lived in Alaska, where the summers are filled with light twenty four hours a day, and the winters were cold and dark. But never completely dark, the sky glows almost like a twilight. Then the northern lights would light up the sky, dancing around like the dancers in a Broadway musical, adorned with beautifully colored costumes, flowing like drapes in a gentle breeze.
Who would have thought that my worst nightmare would come true? In May 2001, I had not been feeling like myself; something was very different. I had been suffering from the worst pain that I had ever felt. It feels as if someone had my head in a trash compactor and would not release the button. The pressure grew in my head and it felt as if it was going to blow up. I knew that I had to do something, so I made my way to the phone and called the doctor’s office.I tell the nurse about my headache and explain that my vision is also being affected. They make an appointment for that day. I guess that was good but now I had to drag myself out of bed and get ready to go.
I forced myself into the shower and the water that was pounding on my head was like baseball size hail on an old tin roof. I proceeded to find the biggest, baggiest pants and shirt that is in my closet and adorned them. I bent over to pull on my socks and shoes and it felt as if my head was going to fall off and roll across the floor. I found myself fumbling to find the car keys, and finally I found them. On the way out the door I ran into the door frame. Ouch!
This was the beginning of what would end up being about 15 doctors appointments which would end with the diagnosis and four words that would forever change my life, “you have multiple sclerosis.”
Each day my eyesight and self esteem diminished, the minutes turned into hours and hours turned into days. I was enduring a constant emotional roller coaster ride. I was unable to accept the thought of being unable to see normally and still being able to live. After all, I was the first blind person I met.
Finally I told myself, that I really needed to get out of bed and get on with my life. So that is exactly what I did. One of the first things I did was move my computer to the attic. After all I could not see it, so I obviously could not use it. Although I did not know it at the time, it was that first phone call that I made that would put me on the road to success and introduce me to a whole new world.
I was introduced to the local agency for the blind that provided rehabilitation services. When I took a tour of the agency there were people who were blind using a computer. This fascinated me. How? Who would have thought? I was an avid windows user and was intrigued by the fact that I could make an adaptation to my computer and still be able to use it. Suddenly, I began to realize that I could do almost anything that I wanted. I asked about my options about employment and college.
As an Army veteran and at thirty one years of age, I knew that if I was going to continue to live an independent and fulfilling life that I would need to pursue higher education, because one thing that I learned was I would need alternative ways of doing things. At that time I only had a high school diploma. So I visited the local community college. I decided to pursue my Associates in Human Services, after all I knew that I would be able to do paperwork with the technology that was available to people with vision loss. So I was more confident, but still questioning my abilities.
As one success built on another, my confidence grew by leaps and bounds. The same month that I began college, January 2002, I also began working at the local agency for people who are blind packaging gloves. Although I had a lifetime of experience in the medical field and was getting ready to go back to college and secure my masters degree as an RN, I had absolutely no marketable skills as a person who was blind. I had to start somewhere. I never viewed the job in manufacturing as the only job that I could do, I viewed it as a stepping stone.
So I continued with my studies. In three and a half years, moved from a manufacturing position to a management position to serve as the Public Policy and Consumer Relations Associate.
By this time I had acquired an entire backpack full of technology. I would carry my dell laptop, with two extra batteries, a thermal printer, a flatbed scanner, a color identifier, a talking dictionary, a cell phone with talks on it, a 4 track cassette player, tapes, books on tape, and all the cords and a surge protector and power cord to provide power to all this technology. I am sure there were other things in that bag because it weighed a ton.
And the importance of bringing that up is that if I wanted to do something that required sight, I obviously wasn’t able to see, but I also did not have the sense to know that just because I couldn’t see that I wouldn’t be able to do it, so I started to find solutions.
At this point I was confident enough in my abilities, to just say, where there is a will there is a way. So I found the way. I didn’t just sit around a feel sorry for myself and say poor blind Sharon you can’t see so you obviously can’t do. When I was in the army, I served as a combat medic. Our training often included the phrase “drive on!”
When you are dealing with a person who has been injured on the battlefield, you don’t have all the high tech equipment that you would in a hospital environment, but does that mean you are not going to treat that soldier that was just wounded? NO! It means that you are going to treat and then use a different kind of technology to move him out of harms way. That may be two branches from a near by tree and a couple of rain ponchos to use as a litter to carry him out of there. But the point is you find what you need or you make what you need with what is available to you. You don’t sit there and whine that I can’t do that because…….
So back to the journey…
Three years after loosing all remaining sight, I was in my new position as the public policy and consumer relations associate, and I had finished my associates degree and transferred I to a four year degree program to secure my bachelors in human services management. I was also in the Business Management Training (BMT) working on a certificate of management with the University of Virginia’s Darden School of Business Administration, an upward mobility program offered by National Industries for the Blind.
Not to mention I was working full time. But technology played a huge role in that. By this time, I was receiving my books electronically from the publisher. Prior I was cutting them apart, scanning them and then using OCR programs to translate into text so jaws could read it. I was taking 21.5 credit hours, pursuing my certificate of management, and working full time. So everything was rainbows and roses; that is until i began to realize that I was not hearing everything. There were times that I felt like I was in a wind tunnel while in a meeting in a large room, or if I was in a banquet hall at a conference, I could no longer hear the fourteen different conversations around me, now it just sounded like noise.
So I made an appointment with my neurologist, who sent me from a MRI and referred me to an E N T (Ear, Nose and Throat Specialist) for further examination. He found that the first lesion that was discovered from the ms (multiple sclerosis), had gotten bigger and was interrupting my auditory pathways (nerves). So I was sent for an in depth hearing test, and it wasn’t what I wanted to hear. But I fell back on the philosophy I learned in the Army of DRIVE ON.
So I got my first set of hearing aids. Another piece of technology. I continued on, going about my day to day routine. Work and school. I watched technology continue to advance. If my computer and stuff wouldn’t do something I needed, do you think I just curled up and said poor me…..No. I would find a way. That determination began to translate into my scripting and building macros to fill in the gaps that was there.
So now with work, on-line classes, and a household to maintain, my days were full, as well as, most of my nights. I discovered you could live on very little sleep. By 2006 I had finished my management certificate and my bachelors of science in human services management and immediately started in a graduate program. I decided that it was time for me to look for a new and exciting challenge. I felt as if I had reached the glass ceiling at the agency I was working at, so I began interviewing. I looked outside of the program I was working in, but realized that my heart and my story maybe could help the next person who came along, experiencing a life changing experience such as mine.
I found that National Industries for the Blind (NIB) had a legislative affairs specialist position opened in Washington DC, so I applied, interviewed and was hired. My husband and I packed up and moved to Washington DC in February of 2008. I was living and working in Washington DC. I would make frequent visits to Capitol Hill. I would sit in hearings and in policy committee meetings.
In October I heard of a position in Raleigh for a vice-president’s position. The President of the agency, Janet Griffey, had watched me grow up in this program, and she noticed me one day at a conference, and said that she wanted me to join her team. Well, I knew I was in no way qualified for such a title, so I blew it off. But it continued to weigh on me. I never want to look back on life and see nothing but regrets, so I called Janet and scheduled an interview, for the primary purpose of eliminating the position. But you see where I am today.
So we packed up again, and moved to Raleigh, I began my position as Vice President at Raleigh Lions Clinic for the Blind in January of 2009. Now remember I was still in school. By this time I was working on two masters degrees. in August of 2009, I finished my MSW (Master of Social Work) and my MBA (Master of Business Administration) both summa cum laude (with highest honors).
Today, I not only use, but oversee our technology services department. My day to day focus was not about my blindness or hearing loss, but about moving the company forward. About sharing my experiences and knowledge with others to improve their lives.
In 2011 I had a slight health set back that caused my ms (multiple sclerosis) to continue to attack me. This caused yet another decline in my hearing. This continued into 2012 until I got to the point that with the hearing aids and the technology I was using to supplement them was no longer strong enough, so with much apprehension, I decided to seek help. I of course had a great example, John Sherwood, because he just happens to work for me. But I was scared to death. After all wasn’t being blind enough! What would happen if I could no longer hear?
So I began to enter a new path on my journey. My new hearing test revealed I had a greater than 80 decibel loss in both ears. So I was fitted for a new set of hearing aids. I was still working of course, and trying my best not to let it affect me, but it was. I was struggling. I felt a little sorry for myself, for about five minutes and decided that I will just find a way. My new hearing aids came In and I left the office and wow I came to know quickly that hearing aids amplify everything! But I continued to work, thinking it would just take some time to adjust to this new technology. But what I had to realize was that hearing aids was not a cure to a hearing impairment, just another supplemental technology.
It wasn’t until this last fall that I finally admitted that I was having problems, so I decided to jump in and get involved in N C D B A. I still wasn’t ready to admit that with a combined hearing a vision loss, that I was not just a person who was blind with a hearing loss, but in fact now a person who is Deaf-Blind.
So John and I heard if an opportunity to receive training at Helen Keller National Center in New York to become trainer for equipment to assist people who were deaf blind. And i knew this was a perfect opportunity for John, but when i told my boss of this, she asked why I wasn’t going to go too? She said it would be Perfect for me! To have the opportunity to see Helen Keller national center, and actually get to get to be a part. Little did I know that she had seen through that tough exterior that I presented to the world. So I went. And wow, what an experience. By that is another story for another day.
But it’s rather funny to look back at the evolution of the technology just in the last 12 years. I have went from an entire backpack full of equipment to only needing to travel with an iPhone and a refreshable braille display. All weighing less than a pound and being able to accomplish all my duties for work, reading, keeping track of my calendar, email, and the list goes on.
Probably the most important lesson I learned was that a lack of sight does not have to mean a lack of vision. A lack of hearing does not mean a lack of understanding. It is vital that you Surround yourself with the dreamers and the doers, the believers and thinkers, but most of all, surround yourself with those who see greatness within you, even when you don’t see it yourself.
It is vital that you find that person in your life. It may be a family member, it may be the person sitting beside you right now. But you have the responsibility to be that person to someone as well. You also have the responsibility to get out there and make it happen. You are truly at a cross roads of what it means to be a person who is deaf blind. The technology that is available does truly level the playing field. That is if you have the motivation to go out and arm yourself with the knowledge and the skills to use it.
Technology now allows face to face communication between a sighted hearing person and a person who is deaf blind, without the need of scheduling an interpreter, but you have to go out there and be willing give up something, in order to put those tools in your tool box. If your tool box is full of excuses, there will never be any room for the tools that you really need.
A construction worker cannot build a home without the proper tools and for people who are Deaf- Blind, the professionals and agencies represented here this evening you must be equipped or equip those that you are working to assist, with the tools necessary to build a solid foundation of skills to be able to live life, work, go to school and play and having that be the forefront of their life rather then their combined vision and hearing loss.
We in North Carolina are lucky to have available to us the services and support that we have. We are lucky to have NCDSDHH, DSB, NCDBA, and a great advocate who represents North Carolina for Helen Keller national center, and that is Marilyn Trader. But even with all of these great services and the people behind them, it is going to take you to realize that you have a stake in this game, and it is time to plant that stake and claim what is rightfully yours and that is the freedom to a wonderful quality of life, to be able to communicate with who you want, when you want.
Many of you have faced a life of stereotypes and misconceptions, a life of people lowering the bar for you. But because of the help and support of agencies and professional, and because of the technology available to us, there is no more room for excuses.
A well known American educator, Booker T. Washington, partially captured what I am trying to say: “Success is to be measured not so much by the position that one has reached in life… but by the obstacles which he has overcome while trying to succeed.”
I know each of you in this room have overcome many obstacles and only you know what the meaning of success is in your life, but you can no longer use the excuse ruler to measure your success.
So forever in darkness, and in a world where music isn’t what it once was, I have come to realize that the warm amber glow of that nightlight or the bright shining sun will never be seen again.
But I can feel the warmth from the sun, I can smell the roses as they begin to bloom, I can taste the salt in the air as we enjoy this weekend by the ocean and I feel the laughter of my friend as we talk about the good old days.I missed all of these things before because I was always too busy looking around. But now I can appreciate everything around, I have learned to use everything available to me, I still have vivid memories of what things look like, but now I “see” more than ever before.
I still can hear those favorite songs as they were sung even though I may not be able to make out the tune if it comes on the radio. But yet I hear so much more, things i never heard before, such as the needs of those in this room.
Even in darkness, I’ve come to accept that there are still things that go bump in the night, or that there may be a monster just lurking around the corner, but I am no longer going to spend my life worrying what they are, because I am no longer afraid.
So in closing i thought it would be appropriate to quote Helen Keller. She stated that:
“I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.”
Thank you for the opportunity to speak at the 2013 NCDBA Technology Conference.
