Recently, I have been focusing on improving my self-advocacy skills, including finding ways I can advocate for myself and explain my hearing loss experience to my friends and the people whom I interact with every day. Sometimes I wish I could write a “quick-start guide,” like the instructions you receive when you purchase a new printer or computer, that is customized to fit my needs and distribute it to anyone I regularly spend time with – sort of like an “Introduction to Being Friends with a Deaf or Hard-of-Hearing Person 101” pamphlet. If I wrote a “quick start guide” about my hearing loss, this is what I would write.
Hello! My name is Jessica, and I am hard-of-hearing, which means I have a hearing loss that significantly affects my ability to hear and understand certain sounds and parts of speech. I wear hearing aids in both of my ears, and I utilize several types of hearing assistive technology as well as a variety of strategies to communicate effectively with others. The following are a few of the most important things I want you to understand about my hearing loss:
1. There is a big difference between being able to hear and being able to understand. My hearing loss affects each frequency to a different extent, which means I can hear some sounds and parts of speech better than others. Because of this, speech sounds muffled and somewhat distorted to me. For example, a phrase such as “Do you want to meet up for lunch?” can sound more like “_o _ou _an_ _o _ee_ u_ _or _un__?” I can hear that you are speaking, but the words you’re saying are not always clear to me, which can lead to quite a lot of frustration for me as well as for the people I am trying to communicate with. Shouting at me doesn’t help me to understand what you are saying, because while it does increase the volume of your voice, it also distorts your speech and makes it even more difficult for me to understand. (It’s also quite humiliating to have someone yell at you, especially in public!)
2. My hearing aids do not automatically “cure” or “fix” my hearing loss. A common misconception about my hearing loss is that turning up the volume and making sounds louder will always help me to hear better. However, hearing loss is more complex than just a simple loss of sound intensity and volume. My hearing aids amplify sounds and make them louder and easier for me to hear – however, they do not always make speech clearer or easier for me to understand. In fact, sometimes my hearing aids make it even harder for me to understand what is being said! Hearing aids cannot accurately discriminate between speech and background noise, and as a result, sounds such as air conditioners, background music, and various other sources of noise are often amplified in addition to the voices of the people I’m trying to hear. My hearing aids are a tool that help me to hear better, but they are not a cure for my hearing loss; I still have a hearing loss regardless of whether I am wearing my hearing aids or not.
3. I am not trying to be difficult or rude. There are many factors that impact my ability to hear and understand. Some factors include the acoustics of the room or area, how clearly and loudly you are speaking as well as the pitch of your voice, the level of background noise that is present, how far away you are from me, whether you have facial hair or something else covering your mouth, how familiar I am with your speech patterns, my familiarity with the topic we are discussing, and the level of listening fatigue I may be experiencing at that moment. I may not be able to understand everything you are saying to me even in quiet environments with few distractions and only one person speaking. Likewise, sometimes I simply don’t realize you are speaking to me at all, especially if I am concentrating on something else, if you are standing behind me and you speak without getting my attention first, or if we are in a very noisy and crowded area. I am not purposefully trying to be rude and make things more difficult; I honestly just can’t hear you very well.
4. Communication is incredibly exhausting for me. I always put a considerable amount of effort into communicating with other people to compensate for my hearing loss. My brain is constantly working overtime to put together the bits and pieces of speech that I can hear and fill-in the missing puzzle pieces of speech that I cannot hear for me to understand what is being said. This increase in cognitive load causes me to become fatigued and exhausted rather quickly, especially when I am straining to hear and understand in a difficult listening environment. It’s no wonder I often prefer to stay in my room and watch a movie with captions or read a book on a Saturday night!
5. I need your help to communicate effectively. It is extremely frustrating and discouraging when I struggle to hear and understand what you are saying. However, there are a few things you can do to help me communicate with you to the best of my ability. One of the most important things I need you to do is to face me and make eye contact with me when you are speaking. I rely on lipreading to fill in the gaps of what I cannot hear, and it is nearly impossible for me to lipread you accurately if I cannot see your face. When we have a communication breakdown (which we absolutely will if you spend more than 5 minutes with me), please be patient and repeat and/or rephrase your message if I ask you to, and please don’t say “Never mind; it’s not important” or “I’ll tell you later” — because it is important, and “later” almost never comes. It may seem overwhelming to try to communicate with me, but I promise it is worth it!
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