by Marsha Drenth
From the Editor: Marsha lives in Pennsylvania and works as a social worker providing instruction in assistive technology. She is the president of the Pennsylvania Association of the DeafBlind and first vice president of the national DeafBlind Division. She has been a Federationist since she was three, the age at which she attended her first convention.
Issues faced by the deafblind are tremendously important, and Marsha has written a wonderful piece. Enjoy:
First, you are probably saying to yourself that hearing loss is NOT a taboo topic. You are also probably saying that you know many people who have a hearing loss. But if they are a person who already is blind, do they acknowledge or talk about that hearing loss? Do they--or maybe even you--admit to the presence of hearing loss? Do you ask others to speak up when you can’t hear them? Or do you just ignore the problem, rationalizing that it is not important to know what that person is saying, and go on with your normal activities? Do you shy away from interacting with people who have strong accents? Do you dislike crowds because they are too noisy and make it difficult to hear people speaking to you? How does it apply to you and others who are blind and who also have a hearing loss? Depending on the severity of hearing loss, it can cause difficulty in communication, independent living, navigation, social interaction, education, and employment.
In most cases there are two different communities within which a person becomes deafblind: the blind community in which someone loses hearing and the deaf/hard-of-hearing community in which someone loses vision. In other cases, some simultaneously obtain both hearing and vision loss slowly or suddenly for various reasons. Deafblind individuals vary greatly in their reason for the hearing and vision loss, communication modalities for expressive and receptive language, education, orientation and mobility, support systems, involvement, experiences, and exposure. A combination of hearing loss and vision loss can happen at any point in a person’s life and affects all races, ethnic backgrounds, education levels, genders, income levels, and pre-existing disabilities.
Why does this affect the greater disability community? As blind people we use our hearing to the best of our abilities. By no means am I saying that blind people always have supernatural hearing, nor do blind people hear better than sighted people, but blind people learn to use their hearing to its fullest extent. For example, when walking down the street, blind people can hear buildings, doorways, trees, people walking by, traffic, and so much more. As blind people, we are taught to listen for traffic to make sure that it’s safe to cross the street. As blind people we can recognize voices and tell you who is nearby. As blind people we use our hearing to locate other people and objects within our environment. Nothing is wrong with this, since using one's hearing to compensate for the loss of vision makes sense.
Unfortunately, this heavy dependence on hearing causes a blind person to be extremely fearful of losing that hearing, similar to how a sighted person is mortally afraid of losing their vision. Blind people cannot imagine losing their hearing. They think the world will be over if they ever lose it. Many times, people will say, "That will never be me; my hearing will always be good." These and many other reasons cause us to ignore the possibility that we could lose our hearing at any point in our lives, often making it a taboo topic.
How do I know all of this? Because I was once one of those blind people who refused to address the possibility of losing my hearing, and now I am deafblind. Yes, it can happen to anyone, at anytime, anywhere, for a number of reasons.
My story of hearing loss began in 2007. After living with blindness most of my life, I started to become lost in familiar environments that I frequented daily. I was connected with my local chapter of the National Federation of the Blind, and many blind people told me that I just needed more orientation and mobility training, not knowing that I had been using a long white cane since I was five years of age. A friend who worked as an O&M instructor suggested that I have my hearing tested. So I made the appointment, telling myself that I was just having a lot of issues lately and nothing was wrong. At the end of the hearing test, the audiologist told me that I had hearing loss. My first reaction was that there was no way, and that could not happen to me. It was true, however, and I was fitted for hearing aids. I did not wear the hearing aids, though, because I did not like the way they fit into my ear or how they made things sound. I was in pure denial. I moved to Baltimore, Maryland, in September 2008, for a job that unfortunately never materialized. I was still not wearing the hearing aids for the same reasons, but I did notice that I could not hear voices in loud places and could no longer hear the openings of doorways. I participated in the 2009 NFB Youth Slam as a marshal, still not wearing those hearing aids. I married my now husband in December 2009 and moved to Pennsylvania. I was still not wearing the hearing aids, although I noticed more changes in my hearing. In 2011 my hearing took a sharp downturn, and I had issues hearing my husband in the same room, understanding speech, hearing traffic, and using JAWS on my computer. I finally took the hearing aids out of the box and put them into my ears. I still disliked how they felt and how they sounded.
Between 2011 and 2013 I transitioned from a mild hearing loss to profoundly deaf. In the spring of 2012, I transferred from the local community college to Temple University to finish my degree in social work. Dealing with a major hearing loss and attending classes at a major university in the fall semester of 2012 and the spring semester of 2013 became overwhelming. Even with hearing aids and listening devices, I could not hear my professors and classmates. I began to fear that I would not hear traffic when crossing major streets in Philadelphia. Overall, life became much more challenging, and I realized that my hearing-based skills were insufficient for safely and successfully continuing my education. I needed to learn deafblind skills.
Therefore, from November 2013 to July 2014, I attended the Helen Keller National Center for Deafblind Youths and Adults in New York (HKNC). HKNC is similar to an NFB training center in that it teaches Braille, communication, independent living skills, technology, orientation and mobility, and job readiness skills, yet it does so with deafblindness in mind. For instance, HKNC offers communication training in tactile American Sign Language using the hand-over-hand method for feeling what another person is signing. Orientation and mobility is targeted directly at teaching skills for deafblind persons to be independent, such as using communication cards for receiving information about the environment when Braille, spoken language, and sign language are not available. Every consumer at HKNC faces the duality of hearing and vision loss, and sharing this journey with others helps address the social and emotional aspects of the struggle. Although I did not like being away from my family and friends, my time at HKNC was probably one of the best things that helped me during that time.
After completing my training at HKNC, I enrolled for my senior year at Temple University. This last year of my undergraduate career was challenging in a new way, since I was using tactile sign language interpreters for communication and Computer-Assisted Realtime Translation (CART) with a Braille display for reading what the professor wrote on the board. I was blessed to have learned Braille at a young age since I was now using Braille in class for CART and at home for reading my textbooks. I took seventeen credit hours in both the fall and spring semesters, with an additional two-hundred-hour internship each semester. In May 2015 I graduated with my bachelor’s degree in social work. In June 2015 I was hired to be the program manager for the Pennsylvania Statewide DeafBlind Support Service Provider program. During my four-and-a-half years in that position, I met many individuals who were deafblind, both those who came from the deaf community and others who came from the blind community; one thing they all had in common was that it was taboo to speak about the vision and hearing loss they were experiencing in their communities of origin. Currently I hold a social work/teaching position in Philadelphia.
Our motto in the National Federation of the Blind is that blindness is just a characteristic and that we as blind individuals can live the lives we want. The same can be applied to people who are blind and have a hearing loss. It is respectable to be blind, and it is equally respectable to be deafblind.
Unfortunately, misunderstanding leads to many situations in which blind people negatively judge deafblind people because they use different O&M techniques, have different communication needs, or take more time to collect information about their environment. Sometimes deafblind individuals are avoided, ignored, brushed off, or excluded from important conversations within the local, state, or national disability communities. Much of the time deafblind persons are not sought out to give their perspectives or feedback. This all leads to deafblind individuals believing that the label "deafblind" means that one is a lesser person or that one is exactly like Helen Keller or our modern day Haben Girma [first deafblind graduate of Harvard Law School]. Just as it should not be taboo to talk about blindness, it should not be taboo to talk about hearing loss with blindness. So why is this topic not being discussed within the general disability and NFB communities? Why do deafblind men and women feel like they are at the bottom of the disability hierarchy? Why aren’t more people identifying as blind people who also have a hearing loss?
I identify as a person who is deafblind, and it is okay to have both a hearing and vision loss. I am not a person who is afraid to ask for people to repeat themselves. I am not afraid to say that I cannot understand a person or ask him/her to please slow down his/her speech. I am also not afraid to say that deafblindness is not always like what Helen Keller experienced. I will tell people who I am and what I need. So should you. The next time you cannot hear something or someone, speak up and make your needs understood in a respectful, polite manner. Tell people that your hearing loss causes some issues in this or that situation. This is the first step on the path of freedom and independence. Be proud of who you are, with or without a hearing loss. Hearing loss does not mean that you’re less of a person or that your life will be less. It simply means that you will have different but wonderful experiences. It is okay for me to be deafblind. It’s okay for others to be deafblind. And it’s okay for you to be deafblind.