To the Girl Who Saw Me Struggle to Communicate

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I stand in line at the bistro in my university’s busy student café, shifting my weight back and forth from one foot to the other while rehearsing my order in my head repeatedly. “I would like a caprese panini without tomato, please,” I say to myself one last time before it is my turn to approach the counter and order my sandwich. The sounds of rowdy college students loudly laughing and talking with one another surrounds me from all angles, and I feel overwhelmed by the sheer amount of sound assaulting my ears.

A blonde-haired employee smiles at me from behind the counter and begins to move her lips, holding a pencil in one hand and an order sheet in the other. I clear my throat and tell the woman my order, pausing for a moment while she writes the order down, and then I tell her my name. We’ve been through this exact same process hundreds of times throughout the three years I have been in college; I know what questions she will ask me about my order, and I have formulated my responses to these questions before even approaching the counter.

The employee starts assembling my sandwich and then slides it into the panini press. As she closes the lid, I breathe a sigh of relief; the only questions I must answer now are “Do you want your sandwich cut in half?” “Would you like to add a drink?” and “What payment option would you like to use?” I start to feel my muscles relax a little, and I quickly pull out my phone to answer a text message while I wait for my sandwich to be ready.

Suddenly, I feel a strong hand firmly tapping my shoulder, and I spin around to see what is happening. The aggravated guy standing behind me in line moves his lips while rolling his eyes, pointing at the counter and letting out an annoyed sigh. I turn to look where the guy is pointing, and I see a student employee holding my wrapped sandwich and moving her lips. “Oh, man,” I think to myself, “what is she saying?” I rack my brain, trying to figure out what question she could possibly be asking me. My sandwich is already wrapped up, so it’s too late for her to be asking me if I would like it to be cut in half, and I have not yet reached the cashier, so she can’t be asking me about adding a drink to my order or which form of payment I would like to use.

I instinctively step closer to the counter and ask the student employee to repeat herself, locking my eyes intensely on her face so that I can read her lips. “I said, ou ou i oo ahh a ow o ou oo ou o-ehh?” she says as she shifts her weight and moves my sandwich from one hand to the other.

I slowly run my fingers through my short hair, trying to make it seem as if I am smoothing it down, but in reality, I am discreetly pressing the program button on each of my hearing aids to change the settings and hopefully reduce the amount of background noise that is interfering with my ability to understand. The program change does help somewhat by reducing the amount of background noise that is being amplified by my hearing aids, but it also makes the voice of the student employee even softer and harder for me to hear.

“I’m sorry, can you say that one more time, please?” I ask, taking another step towards the counter and slightly raising up on my tiptoes so that I can see over the glass barrier better.

The student employee sighs and repeats herself again, but it doesn’t help. The combination of the girl’s slight accent, the distance between her and myself, the background noise of the busy café, and my own fatigue after having just spent all day long in my classes makes it nearly impossible for me to figure out what she is saying. I press my lips tightly together and glance at the scuffs on the toes of my black Converse low-top sneakers, secretly wishing the answer to the student employee’s mysterious unknown question would magically appear out of nowhere in written form.

I feel another tap on my shoulder, though this time, it is gentler and does not seem nearly as urgent or aggravated. I look up to see who tapped me, and I make eye contact with a girl from the line who gives me a shy smile and says “She wants to know if you would like to add a bowl of soup to your order.” It takes me a second to process what the girl is saying, but after a moment, I piece together her lip movements and the fragmented speech sounds I can hear and come up with an answer to give the student employee. I proceed to the cashier to complete my transaction and retrieve my sandwich.

As I walk past the line at the bistro to exit the café, I briefly catch the girl’s attention again, make eye contact with her, and mouth the words “Thank you!” She flashes me another shy smile, and we quickly part ways.

To the girl who saw me struggle to communicate: thank you! Thank you for being patient with me, and thank you for deciding to help me understand what was being said, rather than choosing to stand in line and talk to your friends about how annoying it is to be held up in line by a girl who can’t hear very well.

You turned an unpleasant, frustrating and awkward situation into a positive one, and you saved me from further embarrassment during an incredibly stressful week when I was feeling extremely insecure, isolated, and alone in regards to my hearing loss. It may not have seemed like much to you… but to me, it was encouraging, and it was exactly what I needed to experience that day.

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Growing Up in the 'Gray Area' of Hearing Loss

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“Sister, I’d like permission to tape record your science and math classes.” She eyed me askance from inside her wimple. I went on to explain that my tutor noticed I was missing some information in my notes because of my hearing loss, and she wanted to know exactly what was being taught so she could help me take better notes.

It had been years since I had Special Education services. It was an innocuous request, but I hated asking for this accommodation. Her facial expression alone made me feel like I was asking for a great imposition. Add that to the extremes of the middle school years where I was hyper-aware of my disability and other people’s interactions and reactions to it, and I felt beyond awkward.

It seemed like forever passed before she answered. In reality it was probably no more than a pregnant pause. Slowly, in the very measured, confident tones of an elder speaking to their charge, she said, “I think if you tried hard enough, you can hear enough.”

Bam! Inside, my middle school brain reacted. If I tried hard enough, I could grow a second ear, too. I hadn’t been in Catholic school that long, having just transferred after seven years of public school, but I knew enough to keep my thoughts to myself. Outwardly, I politely thanked her. I walked away, thinking that if she wasn’t going to try to accommodate me, I wasn’t going to try. So I didn’t.

As an adult, I realized I had wasted the two years I was at that school in part due to the nun’s ignorance and my inability to constructively advocate for myself. That wasn’t the last time I heard that sentiment communicated to me. As a person with unilateral hearing and a hearing aid, my ability to hear changes from each situation and can be compromised by such overlooked things as background noise, lighting or the position of sound. So several people have made comments — sometimes much more sensitively — on my “on again, off again” hearing.

All these years later, this is what I’d like to say to that teacher in response.

1.    I was born with my hearing loss. Luckily, it was identified at birth. I was fitted and trained to use a hearing aid and make the most of my residual hearing for years before coming into your class. I have done and continue to do all I can to “hear enough.” My hearing will never be “perfect.” It will never be “normal.” This is as good as it gets. I need you to meet me halfway to bridge the rest of the gap.

2.    If I didn’t hear it, as far as I am concerned, it didn’t happen. I say this to my husband tongue-in-cheek as a joke when he complains I don’t listen to him. But seriously, ironically I am a very auditory person. In the daily hustle and bustle, even I forget that a glare, a lowering of the voice, a turning of the head or a car horn in the background will compromise my hearing more than it will yours from one minute to the next. I never had two ears but then again, you never had my ear. So if I didn’t hear it, I am not aware there was anything to hear. I try to remember and be aware that people with two ears hear more and differently than I do. I need you to meet me halfway and be aware that I hear less and differently with one ear.

3.    This next thing is not so much about what I should have said, but what I should have done. I should have told someone. Being in middle school, I was very self-involved. I didn’t appreciate the network of people I had in my life who could advocate with me. Had I told my mom or another person who understood or had experience with my disability, they could have passed along their knowledge of my experiences and helped this nun to understand what was beyond the realm of her experiences.

Now I value telling my story and sharing my experiences with both those close to me and strangers. I know now the more people who know my story, the less I am alone. I don’t have to do it alone and I accept that sometimes, it is more effective for others to speak my truth with me, for two voices are stronger than one.

Finally to that nun, a teacher who didn’t know any better all those years ago, I still remember you and that very short and seemingly offhand exchange. I was frustrated for many years, not just from that encounter but from the buildup of many similar encounters where I felt devalued, voiceless and powerless. Now I know my experience is different, but valid. Now I know I can speak up and ask for what I need. I know I am not alone. I hope you and others I meet know that too.

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When a Stranger Said 'But, You Don't Look Deaf'

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Have you ever noted your hearing loss for an airline and had them show up with a wheelchair? Or requested a transcript of an audio guide at a museum and gotten something in Braille? When I hear stories like this, I always shake my head in amazement at how uninformed people are about hearing loss, and wonder what we, the hearing loss community, can do to better educate them.

But what about when this type of behavior comes from someone who should know better — someone who has an immediate family member with profound hearing loss? It is harder to know how to respond.

Recently I attended an open captioned performance event for people with hearing loss. At intermission, I was gushing about the captions to my husband, and the gentleman seated behind me must have overheard. “Why are you so enamored of the captions?” he asked. I was excited to have the opportunity to sing the praises of the open captions and help build awareness about hearing loss. I told him that I have a hearing loss and the captions help me catch the dialogue I might otherwise have missed. They really help me enjoy attending the theater.

“But, you don’t look deaf,” he said to me. “Do you even wear hearing aids?” “I do,” I replied, “Two.” Then I turned away to talk with some other folks I knew at the show. Later, the man engaged me again. He wanted to know if I was here with these other people. They didn’t look deaf either. And we certainly all spoke too clearly to have significant hearing problems.

I was starting to get annoyed. Didn’t he understand that someone can’t look deaf? People with hearing issues are young and old, of every race, religion and creed. We don’t look a certain way. We just can’t hear. Despite my irritation, I decided to keep talking with him to help break down the misperceptions people have about people with hearing loss.

Eventually he came clean. It turned out this man had firsthand experience with hearing loss. His brother was born deaf and had battled significant issues with stigma while growing up. He had a tough time in school both academically and socially. It made his life very difficult. Only recently had things improved for his brother, when he received a cochlear implant at age 65.

I started to have more sympathy for this man. Maybe he was just angry at the people who had mistreated his brother growing up, or perhaps he was jealous of our group of people with hearing loss who were happily enjoying a night at the theater — something his brother probably never got to do.

My takeaway from this experience — I feel gratitude for how much things have improved for people with hearing loss over the past 25 years. But it also shows how much work remains to be done.

Readers, do you “look deaf?”

A version of this post first appeared on LivingWithHearingLoss.com.

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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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