Posts Tagged ‘advocating’

Jeff Prail: In Both Worlds

March 11, 2019

I am fortunate that I grew up and experienced both worlds (deaf and hearing) and I consider myself the lucky one for still being in both worlds. The credit goes to my deaf parents, who never held me back from the moment I came into the world. I wasn’t born as a deaf child, but lost a majority of my hearing due to German Measles and a high fever when I was an infant.

My primary language is American Sign Language, my secondary is English–and my upbringing was a difficult task when learning ASL and English (how to speak) at the same time. My mom always made sure that from the moment I was in my diaper until I graduated from high school, speech therapy was always part of my IEP (Individual Education Plan). I used to think it was the worst torture a kid could have throughout the first half of my childhood life, but now I am thankful–because I wouldn’t be who I am if it was not for my mom’s decisions.

Now, going back into 70’s and 80’s, you could say I was a child slave (just kidding!), always becoming the eyes and voices for my deaf parents because during the early era, there were no sign language interpreters or telephone/video relay services. My sister and I always went with my parents to become their personal interpreters. My folks called it “Love”, I called it, “taken advantage of” but in the end, I was always rewarded with Star Wars toys. (I shouldn’t really be complaining, because I sure do love my Star Wars!)

Looking through both worlds with my eyes, I have seen discrimination against my parents just because they couldn’t hear. Many times my sister and I would stand up for my parents, because it wasn’t their fault they could not hear. Believe it or not; even in today’s society with the American with Disabilities Act in place, discrimination still exists. The stories I could tell would turn this post into a trilogy series like Lord of the Rings.

Since there were no sign language interpreters during my childhood days, my mom made sure I sat in front of the class–and how I dreaded sitting in the front rows where we all become Teachers’ Pet. When I was a kid, I wore an FM system strapped to my chest, with wires attached to ear molds. I hated them so much that I kept taking them off and threw the FM system into the toilet and tried to flush it down. It was so big that it just wouldn’t spiral down into the sewer. The school contacted my mom and she would come to school and scold me not to do it again.

But…as the Britney Spears song goes, “Oops, I did it again.” I got into trouble more than once.

When I was in middle school, I was in a special class setting with other deaf/hard of hearing students at a hearing school. We were stuck in a classroom with the same teacher all day long; all of us sat around a round table to make visual communication easier. I disliked my teacher, who was as strict as a nun. She would correct the students over and over again until we get it right. Man, I thought I would never escape that classroom. But, looking back, I am thankful, because if it were not for that classroom, making friends would have been difficult for me as it has been since middle and high school.

Due to my hearing loss, there were many times where I was left out or could not understand spoken words. One incident that really hit me hard happened after a concert. My dad and my sister picked me and my friends up and we were heading home. All of a sudden, my sister went off on my two friends, berating them for making fun of me and the way I talked. When my dad found out, he pulled the car over and he kicked them out and told them to walk home. Then and now, trusting a hearing person is sometimes difficult for me, for I never know if they are truly a friend.

I didn’t ride the school bus; I had a personal taxi driver taking a deaf student and me to school. The driver would stop by the Nebraska School for the Deaf and drop off the student. Then he would drop me off at the mainstream school. One day, I hopped off the taxi and walked into the administration building and enrolled myself in school. It was the first time I ever advocated for myself in the educational setting. I wanted to find a place where I belong, in a culture that I truly understood! The NSD administrator called my mom and basically told her that I enrolled myself in and needed her consent. What I didn’t realize, that moment became an educational battleground for my mom and dad. The school district would not approve my transfer.I was able to remain a student for two and a half years at NSD. My parents fought the school board every step of the way and lost. The school board didn’t care how I felt; I was just a statistic to them. When I was forced to go back to the “hearing” school, I made sure I was heard loud and clear. I stopped talking and started signing in the classroom just to frustrate the hell out of all my teachers during 7th and 8th grade. When I got mad at the teacher, I would sign and express in profanity that teachers could not understand and I would just turn around and walk out of the classroom with a smile. Now, knowing sign language and turning off my voice box sure had its own perks; expressive communication! I can’t recall how many times my parents got called to the school to address the situation. My dad always told the teachers, “Perhaps its time for you to start learning sign language, this way Jeff won’t feel left out.” My parents stood up for me 100% and would not cave in!

My high school days were a riot! I felt normal for the first time because I hung out with “the hood,” concert buddies that I go to concert with. I stuck with the same crowd all through high school and that really helped me by making sure I was not left out.

There was one big change in my high school; I was tired of speech therapy and English grammar was my biggest struggle so we made a shift in my IEP to focus on using speech therapy time to learn proper English grammar and idioms instead of speech skills. I was blessed to have that as part of my therapy skills because I needed those skills to survive in a hearing world.

Now, standing firm with both feet on the ground is something my dad taught me, he would share his life experience because my parents had it worse than my sister and I so I strive myself to educate myself to become my own advocate.

Now, I already shared my first-time as an advocate, my second experience as an advocate was for my Deaf friends who attended the Nebraska School for the Deaf–the state was planning to shut it down. An executive meeting was being held at the city hall and I had the opportunity to speak on the floor. I shared my experience of what it was like being left out at a hearing school and how I felt I belonged at NSD. I also pointed out that closing this school down is an immediate educational failure for my friends because at that time there were no interpreters for mainstream classrooms. I recall telling every student in that meeting room to hold up their signs stating millions of reasons not to shut down the school. It’s their home away from home, a culture that we identify ourselves with, a culture that we belong together, and a culture where our language is understood!

The school stayed open until I graduated from high school. The biggest honor that NSD did for me happened at the high school graduation. The students I was suppose to graduate with (had we won our fight for placement at NSD); had an empty chair on the stage with the graduating class. I was in the crowd when the Valedictorian, Mindy, said in her speech that empty chair was for me!

After high school, I attended National Technical Institute for the Deaf/Rochester Institute of Technology and majored in Quality Management. I picked this particular college because, at that time, it was one of the few that offers both worlds and I felt I would fit in. I was once asked my deaf girlfriend during my college days on what would I pick if there is a checkbox that says deaf, or hearing, which I would pick. I said both because I grew up in both worlds. It was not one world or the other, because that’s the world I grew up in.

Since I shared much of my diaper days till after college partying days, I have gotten older and wiser and of course, being a parent will do that. I am blessed to have two sons who are my pride and joy, Jacob and Riley.

 

My advice to you as a parent, whether you are single, married or divorced: your child is the love of your life and you have their best interests in mind– assure that your child gets the best in life even though we all know there is no such thing as smooth sailing. Your child, deaf or hard of hearing, will face struggles in his or her lifetime. Discrimination and oppression will continue to exist, so always prepare your child to advocate for themselves, and also be there as a supportive parent because you don’t know how that feels until it happens.

Perhaps some of you already experienced the frustrations. Listen to your child because he or she may face a true identity crisis when they get older and never give your child a reason to resent you down the road, even when you as a parent believe you are doing the best interest of your child, remember, you are not in your child’s footsteps. A true-life story to support what I just said; I come from a deaf family; yet, my parents never shielded me from a hearing world and still engaged in the deaf world. They could have kept me as a deaf child, instead of hard of hearing, they could have spanked me every time I try to talk, yet, they gave me a gift, a speech therapy from the day I crawled until I walked across the stage to receive my HS Diploma. They made sure I had both worlds instead of one world. The best gift I could ever ask for–because I had never experienced those horror stories that I’ve heard through the years–but my frustrations were nothing in comparison. I challenge you to be my parents, give your child access to everything.

As a deaf advocate and even in my role with sComm, (a company that manufactures and produces UbiDuo a communication device in real time captions) I heard a lot of  stories of little or no communication access being shared with me at every trade show I do. Every time I hear those stories, it breaks my heart and literally makes me cry. In other words, do not deprive your child of  communication access.

To avoid writing into a trilogy and wrapping it up, I have been and will always be a deaf/hard of hearing advocate. It has to be something worth believing in to advocate to assure one right’ does not get trampled especially with the disability community. I was fortunate enough to work at one of the largest Center of Independent Living, Paraquad, in St. Louis where I oversaw the Deaf/Hard of Hearing Program. I worked my way up to the Public Policy Department and learned how to fight the good fight with the legislators. I have given a presentation on “HOW TO BECOME A DEAF ADVOCATE” at National Council of Independent Living Conference, and won several awards for being a deaf advocate since then.

Being a Deaf Advocate is something that you have to learn to crawl before you can walk to become an effective advocate. There has to be a passion that instills in you in order to fight the good fight, even the bad ones. Being an advocate taught me to be a leader–to be able to walk with knives in my back and also to stand firm on what I believe. I have been an advocate for as long as I remember and regretfully, my days are coming to an end where I am ready to hang up hat up and pass down the torch and enjoy the last half of my life–but not just yet. I still got a couple of rounds left in me in the ring so let’s keep on fighting… I am now one of the five Deaf Certified American with Disabilities Specialists helping and educating your ADA rights.

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