Falling on Hearing Ears

I watch everyone’s faces echo with laughter at Christmas Eve dinner with my entire family. I ask my sister next to me what the joke was. She tells me, “I’ll tell you later”. Of course she wouldn’t want to get left behind in the conversation with me by trying to explain the joke. Everyone knows a joke isn’t as funny the second time around, but I never had the opportunity to hear the joke the first time. The only thing I can do is sit silently and mimic my family’s emotions to pretend I am a part of the conversation. I am 7 years old and I have finally gotten hearing aids, so I should be able to hear now—at least according to my family, but to me it just feels overwhelming. I can hear noise, but I still can’t comprehend most of what people are saying to me without lip reading. My voice seems foreign to me and I wonder if this is how I sound to other people. I also wonder why my hearing aids aren’t working. Shouldn’t I be able to hear normal now?

I sit at the table eating watching my family converse. I come from a big family so there is constant overlapping conversations which fills the space with overwhelming background noise. My hearing aids are picking up everything: the clanking of the pots in the kitchen, the fan, the washing machine. This is new for me because before I had hearing aids, I had never heard these noises and now they are all I can hear. I can’t drown them out even though I am trying really hard to. The noise is overwhelming to the point of causing me a headache so I take my hearing aids off and focus on reading lips. I try to ask my cousin if he wants to play a board game when we are done eating. My cousin says something with his mouth full and his hand covering his mouth so I can’t read his lips. I ask him what he said and he snickers at me and laughs at me with my other cousin. I am surrounded by people, yet I am alone. 

I am playing with my cousins and the new gifts I received for Christmas. My cousin looks at me and tells me my mother is yelling for me. I put my Polly Pocket down and go find my mom. She is angry with me. I can see it in her face.  She looks at me and tells me she has been calling for me for a couple of minutes so that we can go home. She tells me that I need to learn to listen and then asks me if I am wearing my hearing aids. I tell her I took them out at dinner because I was getting a headache with all the noise. She tells me if I can’t listen and wear my hearing aids then I won’t get my presents for Christmas tomorrow. I try to explain to her how loud everything is, but she won’t listen to me and just tells me to put my hearing aids back in. I worry that in a world this loud, my voice will never be able to be heard. My concerns were falling on hearing ears that could listen, but chose not to.  

Photo by Julia Volk on Pexels.com

One of the common misconceptions of hearing aids is that they ‘correct’ hearing, but hearing aids do not do for hearing what glasses do for seeing. Glasses are able to give the wearer 20/20 vision and essentially when wearing them, the wearer’s eyesight is corrected. Hearing aids, however, increase volume, but they do not increase comprehension. Hearing aids do not restore hearing to ‘normal’ hearing, instead they amplify sounds. One who is Deaf/Hard of Hearing (D/HH) will never have normal hearing despite all the technology developed (cochlear implants, hearing aids, etc.) to aid the D/HH population. There is no correction, which is why many individuals choose not to utilize these developed aids. For many years, from ages 12-20, I actually never wore hearing aids because I hated them. They didn’t help me hear better, for me, they just increased noise. All I was ever told when I asked for an accommodation, help, or for someone to repeat themselves was: “You need to wear your hearing aids”. It was as if people were saying that I didn’t deserve help because I was choosing not to hear, but what many peopled failed to realize was that hearing aids are not a fix all. They are an aid. Aids help some people and don’t help others. This is something I wish my family and I knew when I was growing up. I was never not listening. I just wasn’t able to hear and even when I could ‘hear’ with the help of my hearing aids, I still couldn’t comprehend what was being said.

These misconceptions are problem because not only do they reinforce the stereotype that D/HH need to be ‘fixed’, but they also create the fallacy that deafness can be corrected. For the longest time I thought that there was something wrong with me because hearing aids didn’t work for me. I was continuously told that hearing aids would make my life easier, but no one listened when I told them the struggles and difficulties I had with hearing aids. It wasn’t until I was an adult that I learned that many people felt the same way I did and that it is a real issue. For the first time in my life my struggles were validated and this changed things for me because it gave me a choice. If you have a D/HH person in your life, then I ask that you respect their choice, because not everyone wants to hear noise. 

A Lakota Wake

My honor

My pride

My Spirit

I stand still

With my sisters to my side

All lined up

Shoulder to shoulder

Each with our hair 

Braided down our back 

And tied with a ribbon

To give our respects

I stand silently

Holding the tears back

I feel the drummer drumming

But I can’t hear him sing

I’m lost in a trance

The smell of sage fillls my lungs

Until I fear it becomes the oxygen that my body so desperately needs

I know it is late

I have been here all night

The hours mix together 

As we stay with Her on Her last night

The medicine man prays

In a smooth Lakota tongue

I can taste his words on my lips

Clearly as if I had spoken them myself

I see my sister praying with him under her breath.

As the medicine man pulls the knife from its sheath

I stare straight ahead 

While he cuts my braid off 

At the nape of my neck

I feel my now short hair fall across my cheeks

They catch my tears

As I give in to my mourning heart

My Spirit has been cut away

I hardly notice

Because I lost more than my braid today

I go into mourning

Only for a year

And I can hear my mother say

“This is the Lakota way.”

Empty Seats and Sweetgrass

Poetry by Hannah Rose Higdon

Smells of Sweetgrass fill my body and engulf me. It’s a blessing.

I see six students just like me, but so many others are missing.

My 8thgrade graduation class had 28 students.

My high school graduation had 15 students.

So much has changed from them to now. 

Hundreds of people are graduating from this college, but only 7 are Native. 

The retention rate is 77 percent the website boasts. 

It fails to state the Native retention rate here is only at 42 percent.

I stare at all the empty seats wondering why they’re missing.

There’s so much more than what you can see. 

The past can never be forgotten because we still feel that trauma today.

The struggles my people have endured. The hardships they have faced. 

I am one of the lucky few to make it through. 

Sweetgrass symbolizes a ceremony, a blessing, 

but it’s hard to feel blessed when countless of my sisters and brothers are missing. 

I have achieved something. A great honor. It’s a blessing.

60 percent of all high school students in America continue on to college, 

but only 17 percent of Natives continue their education after high school.

But the smell of Sweetgrass again reminds me—that I am graduating. 

That I have made it. That this is it.

I am not just another bad Native American statistic. 

Photography by: Tayzia Claymore-Knight

Sources:

The Time is Now. My Silence Does Not Bring Change: Indian Health Services (IHS) Accessibility

Treaties that Native American people made with the United States federal government guarantees that all Natives receive free healthcare on the reservation. The Treaties mention nothing about accessible healthcare. This is a problem because Native people with disabilities who need accommodations when receiving healthcare services are very unlikely to receive them. In fact, the American with Disabilities Act (1990) fails to even acknowledge reservations at all; therefore, tribal sovereignty makes it so that there is no legal standard for healthcare providers on the reservation to comply. The only disability legislation Indian Health Services is specifically included in is the Section 508 of the Rehabilitation Act Amendments of 1998, which minimally provides some technology accessibility standards as long as it does not “impose an undue burden to do so”. This legislation is tricky because it is interpretative. The people in charge get to decided what accommodations are “too much” of a burden. All the power is left in the organizations, but not in the people who need the accommodations. This is no fault of the Tribes or IHS, but it is something that needs to be addressed.

I am more fortunate than many people because I have free healthcare services. It is important to note that I am extremely grateful for this and I have absolutely no ill feelings towards any of the workers at Indian Health Services (IHS), or the organization itself. I truly believe that the people who work at IHS do a phenomenal job to provide the best possible care for our people. The problem is not the people; the problem is limited funding, lack of Deaf education, and current legislation. The underfunding can lead to the hospital not being fully accessible for everyone—specifically our Deaf and Hard of Hearing people. I am not here to place blame on anyone, or anything, but before we can solve a problem we must admit that there is one. I am simply sharing my personal experiences that I have had. My only goal here is to inform, and educate so that situations that I have encountered can be prevented in future circumstances. Education is power. Only through education and mutual understanding will we be able to make our reservation a better place where everyone has full access to healthcare. My name is Hannah Rose Higdon and this is my story. 

I am waiting in line to talk to check in. When it is my turn I walk up and state my name, birthday, and that I am here my 9:00 appointment. She wants me to confirm my information and ask question about what is on my chart. I miss what she asks so I inform her that I am Deaf and that I need to be able to see her lips. She starts talking really loudly asking me to state my address and emergency contact. I feel embarrassed that what feels like the entire hospital can hear her and my private information. Finally, she is done asking questions and she asks for my hand and puts on a medical bracelet for me. She tells me the nurse will call me in soon and to take a seat. I sit in the waiting room. Constantly alert waiting for them to call my name. I’m on edge. I hate the hospital. I brought a book to read, but if I try to read it I might miss when they call my name. 15 minutes later a nurse comes out and says a name. I look around me to make sure no one gets up. I look at her and say my name as a question, “Did you say Hannah Higdon?”. “Yep. Come with me”. I follow her and I can tell that she is making small talk with me, but I have absolutely no clue what she is saying because she is walking ahead of me. She looks back at me expecting a response. I smile, nod my head and say “uh huh”. I have no clue what I agreed to, but she seems to be satisfied with my answer and takes me into a room. She starts taking my vitals and asking me the typical questions. I keep asking her to repeat herself and she is visibly getting frustrated with me. I apologize to her and inform her that I am deaf to explain why I am asking her to repeat herself. She finishes my vitals and takes me to another room. She tells me that the doctor will be in to see me shortly. 

I am lying down on the hospital bed and blankly staring at the ceiling. I have regular appointments at the hospital so this is nothing new. I have hypothyroidism, migraines, nausea from my migraines, a heart condition, asthma, and allergies. My appointment is really just to check my blood work to make sure my levels are good and to get refills of my medication. The nurse comes back in with a shot. I am confused so I ask her what it is and she tells me it’s the flu shot I wanted since I haven’t got one yet this year. It clicks in my head that this must have been what she asked and I unconsciously agreed to when we were walking into the room. This upsets me. Not because I don’t want a flu shot (I get one every year), but because I had agreed to something without being conscious of what it was. She gives me the flu shot and leaves again. I scroll through my phone, but there is bad service in the hospital. The doctor comes in someone new that I don’t know. IHS (Indian Health Services) always has new people. I rarely see the same doctor. I have difficulty reading her lips, but the hospital questions are routine so I am able to keep up with the conversation. 

She looks over my chart and I can tell from her body language that she is going to tell me something unpleasant. She said that my blood pressure was high and that it has been consistently high over the last year. My heart sank because I don’t know what that means for me. I asked her why my blood pressure is high if it is because I am unfit, anxious, etc. She tells me, “well you don’t look unfit and I don’t know why it’s high, but it is and we need to bring your blood pressure down.” I don’t understand. I am 21 years old with high blood pressure. It doesn’t make sense to me: I don’t smoke, I am not overweight, I am fairly active. She starts talking about the medication she wants to put me on. I am missing half of what she is saying because I am so panicked that I can barely read her lips. I don’t want to be on this medication. She says I can’t get pregnant while on this medication, and lists off a bunch of other potential side effects. I ask her if I have to be on this medication and she says something, but I barely catch any of it. I don’t really understand what is going on, but I just nod my head. Just last year I found out I have a heart condition, one that I don’t even fully understand because I miss so much information depending on lip-reading. She then tells me that I need to go down to the lab to get my blood drawn to make sure my thyroid levels are okay and that she is refilling my medication. She says that they will call me if they have to change my thyroid dosage. I inform her that I am Deaf and that she should not call me because I do not talk on the phone. She says, “Okay, can you leave another phone number for us to call and sign a release form.” I inform her that I have signed a release form that is on file that it is okay to disclose any medical information about me to my mother and tell her my mom’s phone number should be on file, but I write down my mom’s phone number and hand it to the doctor just in case and sign a new release form. I go and get my blood drawn and then head home.

I have just pulled into my mom’s driveway when I receive a call. It’s the hospital. I answer the phone and say, “Hello, I am Deaf. I do not talk on the phone. My mother’s number is on file and I have signed a release form for you to contact her. My hearing aids pick up the person shouting over the phone. I am not picking up anything. I just say, “I am sorry I can’t hear you. Please call my mother, Sherry Lou Higdon”. They just keep shouting at me. I tell them to hold on and take the phone inside to my mom, put the phone on speaker, and ask them to repeat what they said. My mom talks to the doctor for a while and then hangs up. My mother tells me that they are increasing my thyroid dose because my levels are off and that I need to go back and change my prescription. She also asks why I am being put on blood pressure medication. I am so annoyed and frustrated. I literally just told the doctor an hour before not to call me and gave her my mom’s number, and yet, she still called me. I lost the chance to self-disclose my medical condition to my mother because I am forced to depend upon hearing people to have access to a hearing world. I wish that people would take my deafness seriously. I wish that I wasn’t forced to be dependent on hearing people by places that are inaccessible to me. I wish that for once communication could come easy for me. It constantly feels like I am in an upwards battle where nothing will ever change. I think to myself that maybe some mountains aren’t meant to moved. Besides I am only one person. What can I do?

Photography by: Tayzia Claymore-Knight

I am luckier than most. On the reservation I get free healthcare. I have nothing, but respect for the people that work at Indian Health Services. I am very thankful to have access to free healthcare, but unfortunately I do not have access to communication at IHS. Now this is not the hospital’s fault, IHS is underfunded and many who work there regrettably are not educated about working with people who are Deaf (the same can be said for many hospitals who don’t have Deaf awareness training). This is a huge problem—misinterpretation or miscommunication can seem like a minimal thing, but in a hospital setting, it can be the difference between life or death and can force medical disclosure from individuals who may not want to disclose. I have health conditions I don’t even fully understand because I couldn’t understand the doctor describing them to me. I often have to go to my appointments with my mom, where healthcare providers ignore me and talk to my mother instead of me, and then my mother has to tell me what they said after they leave. This leads to misinformation, as my mother cannot remember every single thing a doctor has said, and also denies me the opportunity to be able to ask questions and directly talk to my healthcare providers. I am 23 years old now, but I still have to depend on my mom to call and make my appointments for me, or have my mom call to get my pills refilled (I am uncomfortable talking on the phone and I am a late learner of ASL (as are many Deaf Natives) so I am not fluent yet, so I am uncomfortable using Convo, or other ASL translating services which many Deaf people use). I am forced to disclose my medical information to my mother or family even when I don’t want to because I can’t take the hospital’s phone calls. The hospital policy makes them unable to text, email, etc. information. The hospital is dependent on phone calls and if you can’t make a phone call then the hospital is by definition inaccessible to you. The hospital does not have Deaf accessible phones. Any kind of testing I do, the results go to my mother before me. That’s my blood work, my heart tests, STD testing, literally anything that I do is released to my mom and then my mom tells me. I am forced to have no medical privacy. I am forced to disclose my private information so that I can have access. You have no idea how demeaning that is for me. You have no idea how that makes me feel. I am someone who wants independence, but my situation denies me it. Sometimes I don’t even go to the hospital even when I truly need to because I not going seems better than going and not having access. 

I am not here to place blame on anyone, or anything, but before we can solve a problem we must admit that there is one. This issue is not commonly talked about by hearing people because often they don’t realize there is a problem. This is no one’s fault because it is impossible to know unless you have personally experienced it firsthand, but I am sharing my experience and I am telling you about the inaccessibility now. It is hard to understand someone else’s experience when it is so different than your own, but we must a conscious effort to see things from a different perspective. I do not struggle alone. How many of our elders are hearing impaired and face the struggles I do? My grandmother is hearing impaired and it breaks my heart that she can face the same things that I have. How many children who are born D/HH have had to depend on someone else? I don’t want other Deaf Natives to deal with what I have so I hope my disclosure can lead to positive change. I have never shared my struggles because it is hard for me and sometimes embarrassing that I need help, but I cannot call myself an advocate if I only advocate for myself and for what is easy.

I need to do better. 

We all need to do better for our people because if we don’t how many more will face what I have? How many already have?

The ability to hear is not the standard we use to measure whether or not someone should be able to have full access to healthcare. 

Everyone deserves full communication access to healthcare. I love my tribe, my reservation, and IHS, but it is not without issues. The important thing is that we can fix it. We must constantly work at making our reservation a better place, so that ALL our people can prosper and not be left behind. The time for change is now.

Sources:

Americans with Disabilities Act of 1990, Pub. L. No. 101-336.

Section 508 of the Rehabilitation Act Amendments of 1998, enacted as title IV of the Workforce Investment Act of 1998, Pub. L. No. 105-220, 112 Stat. 936, 1203 (Aug. 7, 1998), codified at 29 U.S.C. 794d.

http://www.southwestada.org/html/publications/ebulletins/legal/2003/may2003b.html

https://www.ihs.gov/eeo/section508/

Hannah’s Declassified Deaf Tips Survival Guide: Communicating with Deaf or Hard of Hearing People

People often say to me, “You know sometimes I forget that you’re deaf.” I get it. I am able to talk to you. My voice it sounds like yours with a slight accent. I am so good at pretending I can hear, that you don’t even realize just how much I am missing. My hearing aids are working frantically to pick up your words so that they sound somewhat comprehensible to me. My eyes are directly focused on your lips to lip-read the rest. Of course, one cannot see all of this happening. Deafness has a disadvantage of often being invisible, or ignored. This makes it easy for people to forget that Deaf or Hard of Hearing (D/HH) people need accommodations when communicating with the hearing world. So I get it; you forget. But I never forget that I am deaf because every spoken conversation I have requires work. If you have a D/HH person in your life, then you can’t forget either. Communication is tricky, but these simple steps can help you effectively communicate with a D/HH person.  

1.ALWAYS face a D/HH person.

And yes, this means for the entirety of the conversation. If you are sitting beside them make sure to turn your face so that you are directly facing them. Do not talk down while looking at your phone. Do not talk to them while looking at the TV. You need to be directly facing them any time you are speaking to them. If they are not paying attention, make sure to get their attention before you start talking to them. I prefer waving to grab my attention, or if we are family or friends you can touch me to get my attention. Do not start talking until you see them looking directly at you.

2. Stand back and don’t yell. 

Distance is important. Do not try to yell or speak loudly into a D/HH person’s ear. Spoiler alert: they won’t hear you. Keep your distance so that D/HH individuals can read your lips. Closer is not always better and louder often does not lead to better comprehension. No one likes to be yelled at. Yelling does not make a person hear better. 

3. Be patient and relaxed.

Acknowledge that a D/HH individual is communicating in a way that is not fully accessible to them. Have patience for any extra time it takes to communicate and do not get frustrated when communication is not perfect. 

4. In groups take turns talking.

Groups can be a nightmare to D/HH people because it impossible to read 3 or 4 people’s lips at once. Make sure that you don’t talk over each other and that people take turns to speak. 

5. Allow the D/HH friend to choose their seating first when you go somewhere. 

This seems a little silly, but sitting in the right spot can be effective for helping D/HH communicate. I typically like to sit in a spot where I can see everyone’s face, as well as anyone else who may come up to the table. I hate having my back to people because I can never hear them coming up behind me. 

6. When the D/HH misses something REPEAT it.

There are so many experiences that I have had when random people come up and try to talk to me, and I have absolutely no clue what they are saying. Repeat what they said to your D/HH friend. 

7. Do not cover your mouth.

Seriously. Don’t. I cannot tell you how many people cover their mouths and say to me “can you hear me now?”. No. I can’t. I read lips. It’s not a funny joke. This is my life. If you’re eating finish chewing before responding that way you won’t have to worry about talking with food in your mouth. Also, do not chew gum while talking to someone who lip-reads.

8. Speak clearly.

Make sure to speak in steady voice that is clear. Do not mumble, even as a joke, because I promise you the D/HH person won’t get it. 

9. Do not emphasize your lip movements.

This distorts your lips making it very hard to read them. Talk in a normal voice and do not exaggerate your lip movements. 

10. Be mindful of where you are and when possible make changes to help reduce background noise.  

It is very difficult for D/HH to communicate when there is a lot of background noise. Try turning off the TV/music, or muting it when your conversing. Also in restaurants/bars try to sit away from speakers or the kitchen. Hearing aids pick up everything, so if you sit by the kitchen their hearing aids will probably pick up the clanking of dishes, the dishwasher, the food cooking, etc.

11. Do not tell a Deaf person “I am so sorry you’re deaf”.

Yes, my ability to hear might be different than yours, but that does not make my life less in anyway. I do not need your pity and I don’t want it.

12. Lighting is important.

Make sure that your face isn’t in a shadow. D/HH need to be able to see lips. Also, make sure it is not too bright, or that the sun is in their eyes.

13. Use body language.

Deaf people are experts at body cues and gestures. Make sure to use your expressions to show what you mean (happy, sad, angry, etc.). Body language is your best friend when conversing with D/HH people. Display your emotions!!

14. Repeat. Repeat. Repeat.

My biggest pet peeve is when I ask someone what they said and they say, “never mind”, or “I’ll tell you later”. Tell me now. If I can’t comprehend what you are saying than re-phrase what you are saying or write it down. One of the worst feelings is being in a conversation when you feel not welcome in or like a burden. When I ask people to repeat themselves and they say “it doesn’t matter” it can often feel like “you don’t matter”. D/HH go out of their way and comfort zone to communicate with hearing people. Effort should be made by both parties. 

15. Do not say “You have accomplished so much for being deaf”.

I have accomplished a lot in my life, but it is not amazing because I am deaf. It is amazing because not many people can accomplish what I have, deaf or not. Being Deaf does not change my ability to accomplish my goals. Lack of hearing is not equivalent to lack of intelligence. 

16. Write it down.

Don’t be afraid to pull out your phone and type something in. I promise it won’t be offensive.

17. Don’t be afraid to ask a D/HH person to repeat themselves.

Communication goes both ways. I often pronounce things differently, speak too fast, or too quietly. Do not be afraid to ask for me to repeat myself. I want you to have full access to the conversation too. 

18. Learn a few basic signs.

Even learning the alphabet can help a lot with communicating with a D/HH individual. Try to learn simple words or phrases: bathroom, more, beer, good morning, etc. You don’t have to know the entire language, but just knowing a few words can help a lot in communicating with a D/HH person. It also shows that you care about communicating with them when you put effort into learning their language. 

19. Awkward moments happen. Keep trying. 

It might be difficult to get the hang of, but your effort goes a long way. Even if you have to repeat yourself again and again, I promise it is appreciated. Don’t give up.

20. Ask.

The best tip and advice I have is to simply ask the D/HH person in your life their communication preferences. I know that it can be scary to bring up deafness—you don’t want to offend the person, it feels like an uncomfortable topic, etc.—but putting effort into your relationship with this person is important so that you will be able to effectively communicate. More often than not a D/HH individual will appreciate you taking the time to ask them. It will also help communication flow more smoothly and be more accessible.

*****I would like to be very clear. These tips for communicating with D/deaf/Hard of Hearing people are not universal. Everyone is unique and has different preferences for how they choose to communicate. I was born Hard of Hearing, but became profoundly deaf the older I got. This has made my experience different than other deaf individuals. These tips may be more helpful for communicating with individuals who have late onset deafness, or Hard of Hearing individuals.  I am simply providing a few basic tips and my personal communication preferences to give people a general idea. 

The Quiet

I don’t mind the silence.

To me it feels calm.

I prefer the quiet of noise’s absence.

I appear ‘normal’ for just an instance.

Before they talk to me and I drop the bomb.

I don’t mind the silence.

I keep myself at a distance.

I’d rather not read lips, but palms.

I prefer the quiet of noise’s absence.

My chest tightens.

My face flushes red.

I don’t mind the silence.

I shouldn’t be embarrassed,

But that’s all I was ever told.

I prefer the quiet of noise’s absence

“You need to assimilate.”

“You need to accommodate.”

But, I don’t mind the silence.

Sometimes I’m treated as a nuisance.

Like the punch line of a joke I can’t hear.

I prefer the quiet of noise’s absence.

Being Deaf is my essence.

I choose the calm.

I don’t mind the silence.

I prefer the quiet of noise’s absence.

Deaf is not Less

I am no stranger to discrimination, yet every single time I experience it my throat drops to my stomach. Discrimination is disheartening because it attacks you at your very core. My deafness is a fundamental part of me. I was born this way. I did not wake up one day and decide it would be ‘fun’ to be Deaf. This is my life. I can tell myself every single day that I am not less than hearing people and I TRULY do believe that, but when I face discrimination all that rational goes out the window. It makes me feel as if I am nothing. Discrimination cuts you deep because it attacks your very essence by calling you not good enough based upon something that you were born with and cannot change. I am so many things. I am strong, intelligent, perseverant, observant, a hard worker, reliable, dependable, kind, outgoing, and DEAF. My qualities are not less than because I am Deaf; my qualities are amplified because of my deafness. 

Discrimination is a poison because it pollutes your self-worth. I was once turned away from a job for no understandable reason. I applied for a political internship and was invited in for an interview. Everything was going great with my interview—my past experience with Snow Queen and pageants set me up to know how to do interviews and do them well. The interviewer told me I was a perfect for the job. They told me the days and times I would be working. I was even walked around the office and introduced to people. At the end I was told that I would have many responsibilities, one of which would be working at the desk and answering the phone. I then disclosed that I was Deaf and that I would need accommodations to do that. Immediately after that, I received a handshake and I was informed that I would receive an email by the end of the week if I had gotten the internship after they had interviewed everyone else. 

Photo by Pixabay on Pexels.com

I received an email 3 hours later telling me that I did not receive the job. Now maybe there were better candidates for the job (they hire multiple interns every year, typically at least 8 with not very many applicants). Maybe I was just not good enough for the internship compared to these other candidates. I kept trying to rationalize why my interviewer basically told me I had the internship just to email me that I didn’t get it. I kept trying to find something wrong with my resume (before I had even applied I went to the career center at my college and they helped me put together my resume for this internship). I was so confused because I did not understand. I understand that sometimes you are not the best applicant for jobs, but this felt different. This I did not understand. I cried after I received that email. I had a 4.0 GPA. I was then pursuing a political science degree, a degree I have now. I have extensive knowledge on United States politics as well as South Dakota politics. I had glowing recommendations from a SD state legislator lobbyist of 40 years, past and current employers, and current professors. My extracurricular activities list was expansive, including being on the NSU Speech and Debate team where I debated politics and government issues almost every day. I was told I would be a ‘perfect for the job’.

Yet, I was still not good enough. I spent days, weeks even, just looking at my resume and continuously going over that interview in my head. I was ashamed and embarrassed that despite all of my amazing qualities, I was still overlooked because of my deafness. I kept trying to rationalize some other reason I did not get the internship. I wondered if I would ever be good enough. That is what discrimination does. It breaks down someone to the point that they question their own abilities. This rejection, even though I knew was because I was Deaf, felt like it was because I wasn’t good enough and that all of my qualities that I have were not good enough. That poison sunk into my soul. It made me question potential, my ability, and even my self-worth. We say that there are laws. That this type of thing doesn’t happen anymore. But I am here to tell you that it does. My story does not stand alone. Laws do not cover silent discrimination. Even though I know in my heart that I was turned away because I am Deaf, I would never be able to prove it. You have no idea how helpless this injustice makes me feel. Discrimination makes you feel powerless. It saddens me that people would rather disregard me as a person than inconvenience themselves to provide me with an accommodation. I am left with the bitter taste in my mouth that I am not worth the inconvenience. That no matter what I achieve I will never be enough. Unless you have personally experienced discrimination then you have no idea how deep it cuts. How many more will suffer discrimination the same way I did? That, I don’t know, but I do know that if we do nothing then nothing will change.

Of course it is easy to say, “They have a right to hire who they want, if they don’t want you it is their loss. Why would you want to work with them anyway” (which one of my close friends did say to me). These words have stuck with me. I didn’t have an answer then, but I do now. Of course I do not want to work with them, but the fact of the matter is that I wanted that internship, but I was denied the opportunity to ever have it because I am Deaf. And yes, businesses have the right to hire who they want, but I also have rights. I deserve an equal opportunity the same as anyone else. The Constitution of the United States of America states that every person has unalienable rights. My capacity to have a job should not depend upon my ability to hear, but rather my ability to do the work especially when I can easily be accommodated through technology and do the work just the same as a hearing person could. I refuse to be discouraged, or to let discrimination like this diminish my feelings of who I am as a person. The only thing I cannot do is hear. 

I AM NOT LESS and I refuse to be treated as if I am.

I am not ashamed of being Deaf, but I am constantly in a battle with a world that judges me based on my ability to hear rather than my ability. A world that is misinformed about deafness, so they deny me before ever giving me a chance. A world that tries to make me ashamed of myself by telling me that I am disabled. 

Deaf is not dumb, Deaf is not disabled, and Deaf is not less.

Deaf is educated.

Deaf is abled.

Deaf is perseverant. 

Deaf is Native American.

Deaf is whatever I want it to be because the limits that society tries to place on me, are not my limits.  

There will always be people that will underestimate me and my ability because of my deafness. I cannot make them see me for all that I am, but I can use my experiences to educate others so that hopefully, someday there is a little less ignorance and a lot more understanding. The world is not going to change unless we change it. We all have to do our part to make the world a better place.


Don’t just learn, experience.
Don’t just read, absorb.
Don’t just change, transform.
Don’t just relate, advocate.
Don’t just promise, prove.
Don’t just criticize, encourage.
Don’t just think, ponder.
Don’t just take, give.
Don’t just see, feel.
Don’t just dream, do.
Don’t just hear, listen.
Don’t just talk, act.
Don’t just tell, show.
Don’t just exist, live.

“The Light in the Heart” by Roy T. Bennett

“I would have never known unless you told me”

It’s Friday night. I’m out with some college friends grabbing a beer. It’s so loud at the bar that the only thing my hearing aids are picking up is the background noise and feedback. I turn my hearing aids to their lowest setting to drown out some of the noise. I mentally prepare myself to spend a night lip-reading, without any help from my hearing aids. 

Our group starts talking, but before I can pick anything up everyone starts laughing. I have no clue what about, but of course I laugh too. I wouldn’t anyone to know I didn’t catch the joke. I think about asking my friend next to me what was funny, but I decide against it. Everyone knows a joke isn’t as funny if you have to repeat it. I scan the faces around me to try to see who is talking. I catch my friend Sam’s lips moving. I stare at her and try to pick up what she is saying. Something about school, but before I can pick up the rest of the conversation her lips stop moving. I scan the faces around me to see who is talking now. I see Mary’s lips moving. They are talking about school. I lip-read that Mary is struggling with her course load this semester. I see her pause, and I quickly scan the group to make sure no one is talking before I chime in to say, “yeah this semester sucks. I can’t wait to be finished”. Mary nods at me and says “same” and continues talking. I think to myself that I have interacted enough for a while and deserve a break. I pull out my phone and start scrolling through it. Often I prefer the silence of isolation because I can always understand myself at least. If someone talks to me and I don’t hear it then at least they’ll think it’s because I’m not paying attention and on my phone. 

I often get told that I do not seem Deaf. People are typically surprised to find out that I am Deaf and say, “Oh really, I would have never known unless you told me”.  Now this is not because I am some amazing lip-reader or have bionic hearing aids, it’s because I am great at pretending. The CDC reports that even the best lip-readers only understand about 40% (2020). Based on these statistics and assuming that I am the best lip-reader, I understand about 4 out of every 10 words said to me in English. That’s it. You would be surprised at how far saying “yeah, uh huh” while nodding your head can get you in conversation. Lip-reading is exhausting and not at all consistent. I struggle just to pick up some piece of a conversation so I am able to respond appropriately. People tell me I am random, but the truth is, that I usually miss what someone has said so I have to change the conversation to something else, or I read their lips wrong and think they said something different.

Communicating verbally in a group is draining for me. There is so many things that play a role in my ability to communicate: how fast people are talking, how clear they are talking, if there is any background noise, if my hearing aids are on the right setting, if I can clearly see their mouth, if the person is directly facing me, if I am positioned in the ‘right’ spot in the room, etc. I have to think about things that don’t even cross most people’s minds. I always position myself in the best possible place so that I can effectively communicate. 

I want to be very clear there is nothing I love more than engaging with people. I am an extrovert. I am the absolute furthest thing from shy. I love communicating with people—that’s why I have a degree in it and why I am currently getting my masters in communication as well. But it is always a challenge. What comes easy for most people is a constant struggle for me. This does not mean that I need pity, but it does mean that I need my deafness to be acknowledged and accommodated.

Photography by: Tayzia Claymore-Knight

We often get told that everyone wants to be treated the same, but I cannot be treated the same because I am not the same as you. I am Deaf. If I am going to communicate in the hearing world, then I need accommodations and I need resources. I am different and that’s okay. I don’t mind the silence that is my life because I can still feel the noise all around me. 

The truth is that most people are under-informed, and more commonly people are misinformed about Deaf culture and what it means to be Deaf, but we cannot let unawareness dictate our lives. We must choose to be informed.

Everyone who knows me will tell you that I am a force to be reckoned with. When I need an accommodation, I always make it known sometimes to the point of making other people uncomfortable. I have absolutely no problem with speaking my mind and asking for help when I need it. I will call people out. My background and upbringing made me a self-advocate and that advocacy is tested every day. I am continuously put in situations where I am not accommodated: a professor shows a video without subtitles, my friends trying to talk to me with a mask on, a professor turns their back during lecture, friends and family trying to call me when I can’t talk on the phone, places requiring you to call to make an appointment, etc. Simple tasks that are easy for most people are a nightmare for me. This isn’t anyone’s fault; it is easy to forget that someone needs accommodations. We are all human. The truth is that most people are under-informed, and more commonly people are misinformed about Deaf culture and what it means to be Deaf, but we cannot let unawareness dictate our lives. We must choose to be informed. The Center for Hearing and Communication reports that over 90% of Deaf or Hard of Hearing (D/HH) children are born to hearing parents. I am part of the 90%; growing up with little resources and minimal access to education about deafness, my family knew nothing of Deaf culture and the accommodations that I needed. Most D/HH children grew up just like I did, but not everyone is a self-advocate and they shouldn’t have to be to still have full access. Some people suffer in silence and don’t ask for help because not everyone can. There are voices that don’t make a sound, but still need to be heard. 

I made this blog to share my personal story, but also to provide education and insight. It is impossible to completely know what it is like to be Deaf or Hard of Hearing unless you are Deaf, but if you have a D/HH person in your life it is important to be educated on deafness. I am learning as I go. I was never fully exposed to Deaf culture until two years ago when I started learning ASL (American Sign Language) with CSD (Communication Services for the Deaf and Hard of Hearing). I am grateful for this education and the opportunity to share it with my family and friends, but also with anyone else who can relate and wants to learn more. Education is our strongest weapon for advocacy and should be accessible to everyone. 

Statistics from the CDC:

https://www.cdc.gov/ncbddd/hearingloss/parentsguide/building/speech-reading.html

Statistics from the Center for Hearing and Communication (CHC):

“If not now, then when? If not me, then who?”

I’m sitting in dimly lit room, if you can even call it that. It is so small I think that it must be a closet. There’s a window, but my chair is facing the other direction. A man comes in and puts a headset on me and puts plugs in my ears. He tells me very loudly to raise my hand when I hear a noise. I think to myself how silly this is. I wonder what is going on. I wonder who this man is and why I am here. I try as hard as I can to listen, as if I focused hard enough I could force myself to hear.

*Beep.

I raise my hand. This goes on for what seems like forever. I don’t really like this game. I wish I didn’t have to sit in here by myself. Finally, the man comes back and takes off my headset. He tells me to go out into the main room to sit by my mom. The man and my mom start talking. I try to pay attention to read their lips for a bit, but I get lost and stare at my shoes. My sister Ashley grabs my hand. I look up and she smiles at me. 

As I sit I wonder when we will be able to leave. We traveled to the big city to come to this special hospital. I guess we didn’t have one back home. I am eager to leave because I am hungry and my mom promised us McDonalds for lunch. We don’t have one back on the reservation so this is a special treat for my sister and me. The man and my mother stand up to shake hands. Finally, we get to leave. My mother looks at me and her eyes begin to water. This makes me sad. I don’t want to make my mom cry. How come only I had to do the hearing game? Why didn’t Ashley have to? 

How come I have to be different?

Photography by Tayzia Claymore-Knight. Photo taken in Eagle Butte, SD on the Cheyenne River Sioux Reservation

I was six years old when I had my first hearing test. The worst thing was not finding out that I was Hard of Hearing. The worst thing for me was how people reacted to it. No one really knows how to handle different. So they didn’t handle it at all. They ignored it. So instead of receiving accommodations that I needed, I learned to accommodate to the hearing world. 

My family never got the opportunity to be educated about Deaf culture. Instead, they were instilled with the idea that most people with DHH (D/deaf or Hard of Hearing) children fall into—that the ‘best’ option for their education is to mainstream DHH kids with their hearing peers at a hearing school. Sadly, we really didn’t have any other options for me. There are no Deaf schools on our reservation. There was no way my family could afford to move so I could go to one. We could barely afford to travel 2 hours away to my audiology appointments. We couldn’t go to Indian Health Services (IHS) because at the time they didn’t have an audiologist at the hospital. These circumstances provided my family and I very little opportunity to learn about the Deaf culture or visit and talk with audiologists. 

Due to ‘mainstreaming,’ I was kept in a hearing school, but was told that I would never be on the same educational level as other children my age. I had to attend ‘special’ classes. I was called dumb when I couldn’t hear something in class because people assumed I was ‘too stupid’ to understand something when I simply couldn’t hear it. I was harshly bullied and had very little friends during my early elementary years. I was told opportunities would be different for me than my hearing classmates. I was given no accommodations in class or extra help. I had never even met another D/deaf or Hard of Hearing person like me so I felt alienated in my experience and like I was the only one in the world who was different. I didn’t have anyone to talk to. Growing up on the reservation with such a small amount of people and resources I was told this is the best that they could do. No one fought for me. So I learned at a young age to fight for myself.

Despite all my struggles, I am thankful I grew up this way. Yes, I struggled. I struggled every single day and continue to struggle. I have to work twice as hard to achieve the same results and sometimes, yes, it sucks. But I refused to be defined by other’s perceptions of what they think “deafness” is. I would not be tied down by societies expectations. I worked twice as hard. I learned to read lips. I advocated for myself. I asked for help. But most importantly, I never gave up and I willed myself to be seen and heard. Yes, it is possible to pull yourself up from these circumstances, but that doesn’t mean we should have to. Life shouldn’t be this hard to just exist. Deaf and Hard of Hearing people deserve better. We need to do better. 

Now there is nothing particularly interesting about me. I’m just your average Deaf Lakota ‘white’ girl. What’s interesting about my life isn’t that my story is unique. You see, I’m just a person. What makes it interesting is that this story is so common, but never told and more importantly, never heard. Deaf people often get pushed aside by hearing people due to language barriers and miscommunication, but I refuse to be ignored. I will no longer suffer and struggle in silence. I have a voice and a story that needs to be told. Sharing my private life and my personal struggle is very hard for me. I am putting my most authentic self out into the world to judge. Not everyone is going to like my story, or my message. It might even be the wrong time to share my story. I consistently doubt myself thinking I don’t have anything to contribute. But then I ask myself one of my favorite quotes: 

“If not now, then when?

If not me, then who?”

-Hillel the Elder

Maybe someone else has a better story. I don’t know, but I do know that there is a problem and I do know that this fight is far from over. We are often told that we need to “be the change that we want to see in the world”. 

But I am living in a world that was not made for me. 

A world that does not provide me access.

In a world that does not want to change. 

A world that so often cannot see the errors in its ways so it chooses to turn a blind eye to the plight of anyone who is different. 

In a world that cannot hear my voice. 

This world may not have been made for me, but I am here.

Identity Crisis

Who am I?

My entire life is posed by the question “who am I?”. I struggle with my identity because sometimes I feel as if I am not “enough”. 

I am not “Deaf” enough.

 I am not “hearing” enough. 

I am not “Native” enough. 

I am not “white” enough. 

I am always told “I wouldn’t know you were Deaf unless you told me” or even sometimes that I “don’t even look Deaf”. These statements confuse me because I am unsure what a Deaf person looks like. D/deaf or Hard of Hearing is not a blanket term for what completely defines a person. The only thing we all completely share is our lack of hearing. These questions also make me question myself. 

Am I Deaf enough because I am hearing aid functional? 

Am I Deaf enough because American Sign Language isn’t my first language?

I struggle with this because I don’t know where I belong. Due to my upbringing in a hearing world, I will never belong completely to the Deaf world. Due to being Deaf, I will never fully belong to the hearing world. I am stuck with a foot in each and unsure of where exactly I belong because in all honesty I belong to both, but I will never fully be able to belong to either. 

Every single time I share my ethnic or racial background, I get that I “don’t look Lakota or Native” or if I “had a nose bleed then I would lose all my Native blood”. I get these so much that when I introduce that I am Native American I feel like I have to explain myself before anyone asks a question. I say “Yes, I am aware I look white, but that’s because my father is white and my mother is Lakota”. It’s perplexing to me that I feel the need to explain my existence when I am questioned. I wonder, just why I have to justify being born the way I was. When I get accused of not being Deaf, I automatically lift my hair back to show my hearing aids. For so long my identity has been how other people perceive me, to the point where I don’t even know my own identity. 

When I started this blog, the first thing that popped into my head was insecurity. I do not fit into the common Deaf stereotype. I do not fit into the common Native American stereotype. I pushed through my insecurities and forced myself to write this, because I believe that more and more of us do not fit into these stereotypes. Just because I don’t fit into the box of what commonly is Deaf and Lakota does not mean that my experiences and existence aren’t valid. It just means we need a different box.

Photography by Tayzia Claymore-Knight Taken in South Dakota on the Cheyenne River Sioux Reservation

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