Hearing aids.

A 'Quick-Start Guide' to Understanding My Hearing Loss

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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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Why I Believe Language Acquisition Bills Should Include All Options for Deaf and Hard of Hearing Children

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I believe true inclusion is to accept people’s right to choose things for themselves. The utopian vision for disability rights is that there wouldn’t even be a debate about “right” or “wrong” in regards to ableism because people would be accepted as they are, not based on what communication choices they made.

Shafik Asante makes the same claim in his article about “What Is Inclusion” for the Inclusion Network:

Across this country a definition of inclusion is offered. It is generally accepted that “inclusion” means inviting those who have been historically locked out to “come in.” This well-intentioned meaning must be strengthened. A weakness of this definition is evident. Who has the authority or right to “invite” others in? And how did the “inviters” get in? Finally, who is doing the excluding? It is time we both recognize and accept that we are all born “in!” No one has the right to invite others in!

There is a growing rumble of a debate taking place across the country around a legislative effort to ensure access to communication for children who are deaf or hard of hearing who have not yet reached school age.

The primary genesis of this movement was to ensure that all children are exposed to American Sign Language, but out of necessity it has evolved to be somewhat more inclusive of all modes of communication.  It is my humble opinion that the narrative around Lead-K and the National Association of the Deaf’s ASL-English bilingualism effort has a ways to go before it can truly be perceived as inclusive by those who are users of modes of communication and languages other than American Sign Language.

I get it.  I truly get it.  The absolute key to language acquisition is exposure to accessible, unambiguous, and fluent expressive and receptive communication.  That is probably the easiest aspect of this entire conversation for everybody to agree on.

However, there is a deep seated belief that American Sign Language is the sole birthright for deaf and hard of hearing children. It is with a regretful sigh that I say, “it’s not that simple.”  American Sign Language is one point of communications access that lets individuals who are deaf or hard of hearing communicate with one another. But Lead-K and NAD appear to act as though it’s the only one.

Other languages and modes of communication are given cursory nods throughout the narrative but are largely add-ons to the critical point that advocates are making, “it must be in addition to American Sign Language.”

True inclusion, as Mr. Asante expressed, is the fact that we are all “born in” to the state of being.  Our choices and those of our parents are not supposed to be engines of exclusion.

The National Cued Speech Association recently celebrated the 50th anniversary of the inception of Cued Speech. I played a role on the planning committee and from the very beginning, we recognized that cuers are an amalgamation of many pieces.  Some of us are oral cuers, some of us are cuesigners, and many of us are a combination thereof. We knew we wanted to be inclusive of all stakeholders in the deaf and hard of hearing community. As a result of that awareness, nearly half of our event budget was earmarked for accessibility accommodations, which included Cued Language Transliterators, American Sign Language Interpreters, and CART.  We checked beforehand to ensure the rooms had good acoustics and our auditory amplification equipment was up to the task.

That was something we at the National Cued Speech Association felt strongly about and hoped to build goodwill with.

When I read some of these proposed bills, it often begins with a line that repeats the, “American Sign Language and English” pretext. Later, English is defined loosely as “written, oral, or English with visual supplements.”  I feel like I’m being told that American Sign Language is mandatory and everything else should follow, and if I don’t subscribe to that, then I’m committing a sin against the American Sign Language community.

Is that really true? Does that follow the definition of inclusion that we discussed earlier in this blog? Shouldn’t these language acquisitions bills intend from the very beginning to provide full and unambiguous access to any mode of communication that is intended to open the lines of communication between families and their children in order to grow a language base in any given language?  We know that’s eminently possible. Why are some people on all sides acting like it’s not?

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6 American Sign Language Gift Ideas for Babies and Children

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Do you still have some holiday shopping to do? If you have a deaf child, a CODA (Child of Deaf Adults), or a hearing child with or without disabilities whom you want to teach how to sign, these gift ideas would be great. My CODA daughter, Coral would have loved these gifts when she was a kid, so that is why I hand picked these gift ideas to share with you!

1. ASL Alphabet Blocks. Build and learn at the same time.

2. Mommy and Me Tees (I Love You). Wear the same top as your little one for the holidays!

3. ASL Alphabet Garland. Decorative and educational way to learn to sign the alphabet together.

4. ILY Hand Shape Pillow. Adds love to any child’s room.

5. Melissa & Doug Sign Language Alphabet Peg Puzzle

. Develop many skills such as fine motor skill, cognitive skill, and hand-eye coordination with this colorful toy.

6. Plan Toys Hand Sign Numbers 1 – 10. Learn to count 1-10 in ASL with this fun toy.

Happy Holidays!

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5 Things I Never Told My Friends About My Hearing Loss

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I was diagnosed with moderate hearing loss when I was in my third year of college. It felt like just another thing on top of a bad health sundae. I was not a stranger to hearing loss, as I was studying American Sign Language and had been for over a year. However, that didn’t change the stress that ensued from my sudden realization that I was officially hard-of-hearing. Here’s what I often don’t tell people.

1. I’m still scared sometimes.

Yeah, I know I should be comfortable with being hard-of-hearing.  I study American Sign Language and now even tutor high school students in American Sign Language. I truly enjoy being part of the Deaf community and hope that I will continue to be able to be part of it for the rest of my life. However, I cannot explain how scary it is to stand in a room with your family and know they are talking but not be able to fully understand them.  It’s scary to think I’m one step closer to losing my hearing completely. I don’t dwell on it, but the thought pops into my head from time to time.

2. Sometimes I feel like I’m between worlds.

I’m not hearing and I’m not Deaf.  Most people assume that I hear just like everybody else when they see me out at the store or at work. I still talk quite well, and when I’m with my family or at work I communicate in spoken English. However, I’m often missing several words in conversations, and it is difficult some days to talk as clearly because I don’t hear my own voice as well as I used to. When I’m in the Deaf community, things are flipped. People assume I sign fluently, but even on a good day I cannot express everything I want to in American Sign Language, and I cannot understand everything someone signs to me.  I’m in between and I can’t understand anyone fully.

3. It hurts sometimes that my family doesn’t sign.

I will always love my family, but sometimes I wish I could communicate with them all the time. Sometimes I feel isolated from them when we’re in large groups. I have amazing friends who sign, but knowing that I don’t have that relationship with my family makes me sad sometimes.

4. People staring at me makes me uncomfortable.

When we are out in public and I have to ask someone to repeat something when I’m ordering food or look at me when they talk or if I sign something to you, people stare at me like I grew a second head.  I will usually point it out to you with a sign that indicates someone is looking at me and a funny face.  I try to make a joke of it, but it really sucks.  I know that usually people are just curious but it can be so uncomfortable to be an attraction for people to watch.

5. I wouldn’t change my hearing loss.

Yes, I have bad days when I’m angry that I can’t communicate or understand people all the time. Yes, there are times when I’m upset that my family doesn’t know sign. Yes, sometimes I’m scared of what is to come. However, I wouldn’t change my hearing loss.  It makes me who I am. It gave me a tie to a community I love and a language that is beautiful. It gave me the strength to advocate for myself and work towards the things I want. It forced me to push past barriers I didn’t even know existed in my life. Overall it makes me a better more tolerant person and I love that.

There are a lot of things I want people to know about me and my hearing loss, but most people already know most of them. I’m an open book — and that is just another one of the many things my hearing loss has taught me.

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A Request to President-Elect Donald Trump, From a Mom Whose Kids Are Hard of Hearing

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Dear President-elect Trump,

We have never met. I am not one of your supporters nor did I vote for you. However, the election is over, and the people of our great nation have spoken, and I have no other choice but to move forward. But, in doing so, I would like to ask something of you, personally.

First, let me tell you a little about me and my family. I am a mother, wife, professional, writer and advocate (by default), for children and individuals who are Deaf and hard of hearing and who live with chronic illness. My two children, a daughter who is almost 16 and a son who is almost 13, are two former very premature babies who are medically fragile/complex and are also severely hard of hearing and rely on bilateral hearing aids. Despite the challenges they have faced, they are bright, funny, talented and they also take an avid interest in politics and issues related to social justice. They were especially interested in this election.

During your campaign, I think it is safe to say you were at times less than respectful to certain groups and individuals, including people with disabilities. Yes, I know there are two sides to every story and your team has said repeatedly that the media has taken videos of you and your words out of context to portray you in a negative light. But, as a citizen and a bystander, it’s difficult for me to separate fact from fiction. All I can do is address what I have seen in the media and share with you how it has affected my family. I hope you hear my concerns and take them to heart.

The first incident was when you appeared to mock New York Times reporter Serge Kovaleski. Please realize when you mock one individual with a disability, you are also making fun and potentially alienating the 56.7 million other individuals in this county who live with a disability. Of that number, approximately 2.8 million are children just like mine — children who are struggling to fit into a society that is not built with them in mind, a society that often looks at those who are different as less valuable, less intelligent and even burdensome.

Of major concern to my family are the reports of you insulting Academy Award-winning actor Marlee Matlin. Three unnamed sources have said you called her “retarded,” mimicked how she speaks and that you were heard saying hurtful comments in her presence knowing she could not hear you. When my son saw this report, he looked at me with anger and tears of sadness in his eyes and asked me, “Mom, how is it possible that this man might actually be our next president?” As I struggled to find an answer, I became angry that you, a celebrity and candidate for the highest office in our country, could possibly act in a manner that left my child feeling like he had just been attacked by a bully in the school yard. I can only imagine what it felt like for him, but for me, it was like being sucker punched in the gut, swept to the side of the street, and left on the ground in a crumpled heap like a piece of discarded trash.

Being Deaf and hard of hearing does not make an individual unintelligent, just as being able to hear does not make a person smart.

You now have an incredible opportunity before you. Beginning January 2017, you will have the chance to demonstrate how you feel about individuals with disabilities and who are Deaf or hard of hearing. You can do this by trying to learn and understand the daily struggles faced by disabled individuals in accessing their workplace’s, schools, and community. You can learn about the unique challenges that Deaf and hard of hearing individuals face in accessing the one thing we all talk for granted: communication.

You will have the power and ability to help ensure that all children with disabilities have access to the resources they need to reach their full potential and that disabled adults have access to meaningful jobs, transportation and accessibility into their local communities.

If the media was truly wrong in portraying you as someone who would mock individuals with disabilities, then please demonstrate it with your actions as President of the United States by including individuals with disabilities on your staff. Support issues and legislation that help them personally, and be the type of president and role model my children can look up to.

Mr. Trump, personally, I question your willingness, interest and compassion in helping to improve the lives of individuals who live with chronic illness, disabilities and/or who are Deaf or hard of hearing.

This is what I ask of you, over the next four years: please do all that you can to prove me wrong.

Sincerely,

Kerri Goff
From the Great State of Michigan

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Photo by Gage Skidmore

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Deaf Actress Marlee Matlin Responds to Reports Trump Called Her the R-Word

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On Friday, The Daily Beast reported that Republican presidential nominee Donald Trump had a history of calling Oscar-winning actress Marlee Matlin “retarded” during her time on “Celebrity Apprentice.”

Matlin, who’s the only deaf actress to win an Academy Award for Best Actress, responded to the tailspin of media reports that followed.

Her statement reads:

Recent media reports have circulated that Donald Trump allegedly referred to me as “retarded.” The term is abhorrent and should never be used. The fact that we are talking about this during a very important moment in American history has upset me deeply.

I am Deaf. There are millions of Deaf and hard of hearing people like me, in the United States and around the world who face discrimination and misunderstanding like this on a daily basis. It is unacceptable.

So, what’s my response? It’s not about insults or taking each other down. As a person who is Deaf, as a woman, as a mom, as a wife, as an actor, I have a voice. And I’m using that voice to make myself heard… and vote.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

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