Reading Time: 10 minutes
Hello my name is Daniel Hawkins. I am not an alien. I am just a very peaceful human that is also very good looking. Well I think so. However there are some differences I have that you may not be used to. Other than my good looks, I happen to be a Deaf-Blind. What does that mean? No, I am not making things up. There are individuals who do experience dual sensory loss. As for me, I have both hearing and vision loss. Kind of makes my world small, eh? Don’t worry, I have plenty of room for imagination. Yes, I do sometimes feel sorry for those who are around me. Yes, my wife does have to put up with me. Some of the things I say and think of sometimes make others really think I did come from space. Yes I do dream I do have superhuman strength and I get the power from the sun. Sadly, I should just stick to my good looks.
So, how did this really good-looking guy lose his hearing and vision? Well, in a galaxy a long long time ago.. wait! I did not come anywhere, hold on, let me get my story straight. Ok, let’s see, Yes, it was long time ago, in 1984, I was born into this world. Yup, scared my parents when they first saw me. I was not always this good looking. However sadly, I was born six weeks premature. When I was born I had a whole lot of health problems, that I am still learning what is going wrong.
The biggest problem I have had was Hirschsprung’s Disease. What does that mean? It means part of my nervous system in my intestines did not work. That is why I was born early. I was not able to take in the nutrients. Two days later, my intestines ruptured, which brought me in an amazing helicopter ride to Cardinal Children’s Hospital. They had to do an emergency surgery and had to remove my large intestine and half of my small one. We don’t know the exact amount, but I can say it sure does keep me thin! Due to all the health problems I have, I lost my hearing as a baby, at approximately around 3 to 6 months of age. My mother did not notice I had hearing loss until later in life when I was not talking like other toddlers. When she told me, “No!” I would just keep on doing what I was doing. Years later, mom said I never listened anyway. By the time my mom noticed I had hearing loss, she started looking for ways on how to communicate. Back then she had never heard of American Sign Language and had no clue what to do. She took me to an audiologist and I wound up getting hearing aids. I can hear pretty a well if the room is quiet. However my mom wanted more communication. What about classroom setting, or a noisy situation? So she started going to basic ASL classes. My Dad went with with her. It would take several years for her to improve and for me to understand. But the process had started me on my way to independence. When I was three years old, my sister was born.
Sadly, my sister was better good looking, but I am still smarter! When my sister was born, she ended up having similar problems that I did. However her hearing was and still is worse than mine. At the age of five she was completely blind. Therefore, her vision was worse than mine. As for me, I could see in my right eye with glasses or contacts up to age 25 pretty well. I lost my left eye due to retinal detachment at the age of 3, and then my left eye was removed at age 14 due to glaucoma.
Well ladies and gentlemen, I had made a big mistake growing up. I did not listen! Yes, I was born with hearing loss, but with hearing aids, I could hear pretty well. I was almost blind, but with contacts or glasses, I could see pretty well. So I thought, “I am normal. I don’t need to learn American Sign Language, learn Braille, or learn independence skills.” All throughout my childhood life, I was given support on communication and received assistance on making my life easier. I had family, teachers, and friends that worked hard to help my sister and I.
In my early ears, I was placed in Special Education class. This was along with a roomful of other children with varying disabilities. The downside? All the fellow classmates are in different grades and learning abilities. We only had one or two teachers with a few aides. The learning process is very low and slow with that setup. It was fun for me…no homework and all play! I would have a workbook that I would have to do several pages of and that’s it. This may be great for some students, but if a student has the ability to go mainstream or to be integrated in regular education classes with little assistance, by all means they need to learn more!
Because of my stubbornness and thinking that, “I am normal,” I wanted to go to school and be like any of other kids. I told my mom I wanted to go to the same school as my cousin. Little did I know it took over one year just to get my future education to change and to attend a mainstreamed classroom.
I did not realize it, but I was one of the first students in this area to go to a classroom with just an interpreter and received the same education as other students could get. Starting in fifth grade, I went to the local school and rode the bus just like the kids who live on my street. It was scary! I had an interpreter, note taker, and a funky FM system. I even had specially ordered books in large print. Yes, one child received one textbook. I received four of five of the same textbook all in large print. Yeah, I had a good workout at that time. This was before we learned there are backpacks with wheels.
Fast forward to a few years later. I had successfully gone to an average school from the fifth grade and then went to high school and graduated! Remember kids, do your homework! Don’t be a slacker like I was. I passed school doing as little as I could. If I had applied myself, I could have done so much more.
Now at the age of 25 I started noticing my vision was not doing too well. When I drove, I would follow trucks too close, and I would drive slower than most of the traffic. At that time I was dating my now wife. One day I told her that I have a high risk of going blind. Well, my wonderful and beautiful wife did research! She was more prepared than I was if I lost my vision!
So she had me go to the eye doctor. We found out my vision was at 20/200. Yes, I was still driving. At that point, I was legally blind. So I stopped driving that day! If anyone knows me, one of the biggest things I love is driving more than anything. Things I loved to drive include bikes, tractors, cars or trucks, boats, and Radio Control (RC) cars to model trains.
What I had in my right eye was a cataract. No biggie. However for me, since I had already lost my left eye, and my sister lost her eyesight, I posed a much higher risk of losing my vision. So the doctor told me to just enjoy my vision until I went completely blind, then he would do the surgery. So in that case, if the surgery was not successful, I had enjoyed the last year of my vision. Ok, no biggie. In the meantime I had asked my wonderful beautiful wife if she would marry me? And what do you know, she said YES! Poor little girl, she had no idea what she was getting into. We had our wedding when I still had some vision. At the time I could see good enough without the red and white cane, but I could not read print. So, yes I got to see my wife on our wedding day, and she did look beautiful.
My wife and I married on May 23rd 2010, and I had my cataract surgery that December. All was fantastic until six weeks later. I had red eyes, blurry vision, and a bad headache. I had an infection in my eye, which is common for cataract surgeries. As for me, my infection had caused high eye pressure also known as glaucoma. We battled that for three months until I needed an emergency surgery to place a tube in my eye. This is also known as a shunt. They put into my eye to relieve the high eye pressure. It worked! Now, new problem…I developed dry eyes due to my eyelid not closing all the way. I struggled with severe dry eyes for three years until I went completely blind. Due to the scarred cornea, my retina detached. Up to this point, I was able to see light, and tell the difference between light and dark. When the retina detached, my world went dark.
Despite all of these problems I struggled at being independent. Because of my love for technology, I learned that the Apple iPhone and iPad is completely accessible for the blind! So I got an iPad and later an iPhone and it took me almost 6 months to learn how to use it. Good thing I had a bunch of free time! There have been so many hindrances on how to use them. To this day, I am so glad I did not chuck my iPad or iPhone across the room and destroy it. Now, after finding many resources online and from just playing around them, I am now very independent, especially when it’s regarding my iPhone.
In the meantime my wife was taking classes at a local community college in interpreting ASL. She decided since she was married to a Deaf guy, might as well learn how to sign correctly and make a career of it. Due to her school social club to meet other Deaf people, my wife had met an employee of LINC Inc. I had never heard of that place! This nice lady went on to explain that LINC Inc. is a resource center to help those who are disabled and to help everyone to live independently. So I was like, “I need help! Sign me up!” I had applied at the local Vocational Rehabilitation Center and I was not getting the help I needed at the time. After visiting LINC Inc, I had applied for ATS, which is the local Paratransit bus service. They can pick me up and drop me off anywhere I wanted to go to in this specific area. Also, we found out that LINC, Inc. could teach Braille, which I badly needed. I still need to keep learning it! Every time I visited LINC, I met others who had various disabilities and met some wonderful friends who offered a lot of support and peer support. Just last year LINC, Inc. has started a blind support group called New Seekers, which I have met and made friends who have had the same vision loss and issues as me.
Well, it did not take me long to say, “Hey, I know I can help!” Since I loved my IPhone and IPad, I wanted to show others that they can be independent with these devices. Upon meeting other blind people, I found out that many had not heard about the iPhone and how it is accessible. Many wanted to learn how to use the accessible technology. So I decided to start volunteering here at LINC Inc. I had so much fun with the staff and I was surprised on how much I knew and how I could help out with my limited knowledge. At that time my wife was hired on to LINC, Inc. staff to help out in another department. So with that connection, I got a chance to hang out at LINC, Inc, and learn many resources.
It did not take too long for the directors at LINC Inc, to notice my good looks and my abilities. These included knowing ASL and having resources as a blind person to help others. They decided to hire me on as a Deaf Blind Advocate. As we are beginning to find out, there are a growing number of individuals who have both hearing and vision loss. It could be from just old age, genetic from birth, or an injury.
Did you know there are different diseases and types of illnesses that can cause vision loss? Usher’s makes up about 40% of the Deaf Blind population. Charge Syndrome is an increasing syndrome being seen in Deaf Blind people. Due to that there are more individuals who need peer support, independence skills and resources on how to live, communicate, and socialize with dual sensory loss. Losing hearing is one thing. Losing vision is another thing. But when both senses are gone, a person will learn to depend on the other senses more. But if you lose both? Not to worry, there are Deaf Blind who are very independent and nothing holds them back.
There are many things I have done that I thought I would never think I would do again. Thanks to NLS, or National Library Service, I have pretty much unlimited audiobooks or braille books at my fingertips. I can “read” them on my iPhone or iPad. I have gone bowling and have gotten several strikes with no bumpers. I have driven a go-kart at a track with a buddy sitting next to me telling me go left or right. The entire time my buddy did not touch the steering wheel, and I had the go-kart floored. Yes, I did have three crashes, one of them pretty good. I have driven a tractor-trailer in a Walmart parking lot complete with a loaded trailer. The owner of the truck just told me to turn left or right when needed or shift or stop when needed. I have also driven a 1987 Camaro with a 5-speed transmission and got a good smoking donut. I have even driven my wife’s brand new Subaru in a large empty parking lot! It was so much fun!
As you can see from above, just because I have both hearing and vision loss, I am far from bored. Every week I have a full schedule from part-time working helping the community, to helping my wife clean, cook, and other various household chores. My wife and I even joined a gym which I go around by myself and get a full workout. One thing I have learned is…DO NOT IGNORE YOUR SUPPORT! With this support I have gained independence where I can do many things that I thought I would never be possible as a Blind or Deaf Blind person. Losing your hearing, vision, or both is a huge step and life-changer. There will be a period of grieving, but the day you accept who you are, and decide to do something about it, is the day you will do the impossible.
In conclusion, I have one tip for parents. If you have a child that has a disability, whether from birth or injury, the more you help your child, the more that child will have the ability to do great things and become more independent. I would not have gotten this far if both of my parents did not learn ASL. I have seen many parents refuse to learn sign language to communicate with their children, so therefore, their children may struggle to be independent and they may struggle with learning language. Remember, it is about the child, not you. Just because they can hear just a little, it does not mean you can just talk. There are many things they miss out on. This goes the same for other disabilities the child has.
I hope you found this enjoyable and see how much a person despite their disabilities are they have every right to do as much as everyone else. The first step is to be you, and accept support from others. Feel free to come to LINC, Inc, and ask any questions how you can be more involved in helping this great community or things to help you to do great things.