Deaf

You Ask, I Answer: What’s the Deaf Experience Like?

20 Questions About the Deaf Experience from a Blind Friend is available in distraction-free PDF at the end of this post, and in my new podcast, also at the end of the post.

I absolutely love talking with people who have disabilities other than mine, and seeing things through their perspective, and learning more about the way that they navigate and experience the world. I love the “oh wow!” moments I have in conversations, in just looking at things from a completely different way. Those little “a-ha” brain explosions make my day, every single time they happen!

I wandered into a conversation with a new friend who is blind. She was talking about how she hadn’t known that the color changes for a burner on the stove, and I responded with how interesting that she found that out – and I had just found out some things of my own, like that you can hear the river from my front porch! And the coffee machine beeps when it’s done!

She went on to ask what I call “20 questions” – a lot of questions that flow through and from conversation.

I really liked her questions! I thought they were fun and illuminating on how different our perspectives are, and I loved her interesting way of thinking about the d/Deaf experience.

I received her permission to post the questions (and my answers) here on this blog. Bearing in mind that these are obviously just my answers from my perspective as just one singular deaf person, here they are. 

1. Why do deaf people need the fire alarms with the flashing lights? The regular fire alarms are so loud that you can feel the entire room vibrating when they go off.

Alarms and rooms are different.

There are some fire alarms that are totally fine sans lights because they do make the room vibrate, but sometimes the walls are so thick that the vibration won’t be enough to wake me up (especially adolescent me: I was a very deep sleeper growing up, well into my mid-twenties).

Flashing lights will always wake me up.

So I guess in the case of fire alarms, you’d want to err on the safe side and have both, just in case the walls didn’t vibrate enough to wake up a heavy sleeper.

2. How do you do things without having to have an interpreter everywhere? I would assume that you can’t have an interpreter go with you everywhere because the government probably won’t pay for it and it is expensive and you can’t afford it and it isn’t very realistic.

I don’t usually use an interpreter because ASL isn’t the primary way that I communicate. I wouldn’t be bringing an interpreter around with me if I could. But your question remains about communication: yes, it can be so tough.

It reminds me of this time I went to get my oil changed in one of those drive-through oil change places. I couldn’t hear the guy and I just nodded my way through it because I was tired of trying to figure out what he was saying and I thought, what’s the difference? It’s just an oil change, it’ll be fine.

But then the bill came and it was $600!! It turns out that all of those things he had asked me (that I had nodded to) were questions about upgrades!

So after that, I’ve always carried pen and paper with me and I have people write it out when I can’t figure it out or when I’m tired. My kids also help by telling me what people are saying.

For most d/Deaf people, regardless of ASL proficiency, I think that’s pretty common – we use a combination of pen/paper and the help of allies and families around us. A lot of children of deaf adults (who are called CODA) grow up translating for their parents, either with ASL or with articulation (like mine do; they hear something mumbled and turn to me and articulate it clearly so I can understand).

3. Like if you want to order something at a restaurant, how do you do that? Do you just point on the menu, but then what do you do if you want to ask a question? I suppose if I were in that position, I would write it down. You could do that, but if I became deaf, I wouldn’t be deaf blind, and I can’t write print.

Because I can speak, I have no problem ordering – my problem is when they repeat it back to me.

I rarely rarely feel like going to the trouble of making sure they got my order down right, so I usually just nod (I’m sure you see a habit here!). My oldest kid likes his food the way he ordered it, so he tends to pay attention when they repeat it back and correct them if they are wrong.

I don’t often ask questions when ordering – I hate dealing with having to figure out their responses! But if I do ask questions, I make sure someone hearing is around me (usually my oldest kid or a friend) and they translate if I don’t understand what the server said. I don’t usually (if ever?) ask questions if no-one is with me for back up because it’s just too much trouble.

4. But you don’t have something to write with all the time.

I have run into this more times that I can count!

YES, thank you for noticing this! I do almost always have my phone on me though and now I use that to write on – I open up the ‘notes’ section and write.

5. What if you have to get someone’s attention to ask directions?

I don’t usually ask for directions.

I use map and direction apps that are connected with my apple watch. My apple watch taps me when it’s time to turn. If I am completely and utterly lost, I will ask and have my phone ready to write on.

I know a lot of d/Deaf people who have pre-printed cards that say something along the lines of, “Hi, I’m deaf and I need some directions.” They also have cards with a variety of requests already printed and they just point to the one they want at that moment. It’s pretty useful.

The only pre-printed cards that I have are the ones I keep in my wallet, and in my car for police. It states that I am deaf and I can’t hear if they are asking me to do something (- I’m always scared they will shoot me for non-compliance when I just don’t hear them).

6. What if you are at a hotel, and you need to call the front desk because you ran out of shampoo? I know that some deaf people can speak without sign language, but some can’t. Even if you could speak without sign language, that would really help much because you can’t hear it.

This is such an insightful question.

So, if I run out of shampoo (which I have), I wait until I see housekeeping and then ask them. I might stop off at the front desk and ask for more (or more bedding or whatever). For a more pressing question, I might ask my oldest kid to call the front desk.

But I also usually bring shampoo to hotels!

7. How do you have a job interview? Do you have to disclose deafness ahead of time?

This is such a great question.

Because I speak clearly, I can “pass” as hearing. But I’m not really hearing, and that can easily come around to bite me later when I’m asked something (because I’ll be unaware that I was asked something and then be judged by my lack of response).

When that happens, I appear dismissive, spaced-out, unfriendly, unintelligent or something else equally undesirable.

If I tell employers I’m deaf ahead of time though, they usually jump to their own conclusions about what that means and what I’ll need. Those conclusions are usually wrong.

Because I don’t require an interpreter, I tend to only disclose when I get to an interview or in an application in which being deaf is to my advantage. But it’s also true that when I was a job seeker, trying to figure out the best way to disclose gave me intense anxiety.

Other d/Deaf folk that require an ASL interpreter need to disclose ahead in order to have an interpreter present at the interview.

8. I know that some deaf people can read lips, but I was reading that you can only pick up like 20% of the words by reading lips, and that doesn’t seem like it would work out very well. From my research, it hasn’t worked out very well for most deaf people.

That’s probably true!

I do lip read but lip reading is a skill and I have been practicing it for 40 years. I am very good at it.

I have heard that those of us who lip read actually pick up something like every 5th word, then we make sense of it using a combination of body language, facial expressions, and context. I feel like I understand a lot more than every 5th word – I feel like it’s more like 60% on average but it can be higher, depending articulation, context, etc.

While I lip read very well, putting together all the pieces – combining facial expression, body language, lip shape, sound that I pick up with context takes a great deal of focus and is exhausting.

9. If you were born deaf and you don’t even know what words sound like, and because the structure of ASL is completely different from English, I don’t know how you could even learn how to read lips and even if you could, would it really be worth it to go through all that trouble?

YES!!! This is such an insightful question and observations! YES!

I undoubtably lipread as well as I do because I was not born deaf. I was born hearing and the range of my hearing has progressively decreased. My mind is linguistically wired for English.

The experience of those were born d/Deaf is completely different from me. Lipreading makes no sense for them at all.

Since lip reading requires so much focus and is utterly draining and exhausting, it’s not something I would ever recommend as a solution for the d/Deaf to communicate with the hearing. In lip reading, the bulk of the work communicating falls squarely on the shoulders of the d/Deaf and the amount of work it takes is rarely understood by the hearing.

10. How do you even talk to someone at the theater to let them know that you need the closed captioning? One time, I was trying to get the audio description, and they gave me this mirror on a pole, which I assume is for deaf people. This happened when I was visiting my family. They acted like it wasn’t that big of a deal, but I felt pretty mad about it. I wonder if they give deaf people the audio description?

Since I speak, I just ask them for the closed captioning glasses.

This is a new thing for me and I love it!

My town here in Hawaii is great about keeping the gear for captioning easily accessible and they are also great about providing daily open-captioned options (that’s where the captions are directly on the screen). What I wonder about are audio descriptions actually, because I wonder if that’s an option here? I don’t know.

11. Or how about if you have to call 911? I don’t understand exactly how TTY works, but I know that you are supposed to be able to use that to call emergency services. However, since most people don’t use that, does it really work in practice? Can you use TTY to call everywhere? What do you do if you have to call a place that doesn’t have it if you can’t use it to call everywhere? I suppose if I were in that position what I would do is just get a screen reader on the computer and then type and then put the phone really close to it and have it talk really loud, but I don’t know if that would work.

Such a good question. You have so many great questions!

TTY has been a real issue for me. Everyone says, “call for information” and then since I couldn’t hear on the phone, my only option was to use TTY. But TTY only works with a landline, and I haven’t had a landline in, what, 15 years?!

I think of TTY now as the great pass-off – companies say to call TTY but with no-one using it, it’s a dead end.

I mean, really: who uses it anymore? I don’t know anyone who uses it! People who are Deaf – who use ASL as their primary means of communication – they use VRS – Voice Relay Service. It’s an online ASL interpreter. There are also great programs like Hamilton CapTel which functions like TTY (only better). They operate on cell phones or landlines and caption the telephone conversations.

That’s really similar to what you are saying you’d do with the screen reader!

About 911, I’ve always banked on being able to just dial 911 and leave it open. I heard that if you do that, they will come around and check if you don’t respond in a certain amount of time. I should be sure about that though, before I make that my emergency plan!

12. I know that autistic people and people with cerebral palsy speak using an iPad app, and then when they talk, it sounds kind of like a screen reader. Maybe if you are deaf, you could do that. I suppose you couldn’t hear it, but you could just type and then press the button, and then you could feel it vibrating so you could know it is talking.

That’s a really good idea.

13. How can a deaf child have friends in school if other people don’t know sign language? I know that it must be possible and that some people could learn sign language.

I went to my island’s Deaf Club meeting yesterday and there were a lot of signing hearing people there. They all said they learned ASL through school – having deaf friends at school.

So yeah, Deaf kids who use ASL as their primary means of communication can make friends with hearing people. Hearing people can learn ASL.

It’s also true that a lot of d/Deaf kids have varying degrees of ability to talk or lip read.

As I grew up oral, I didn’t know any sign language at all when I went to school. It’s just a fact that all of my close friends articulate well or are very patient and repeat a lot of stuff for me.

Being d/Deaf at school though is, I think, a potentially isolating experience. I am social, outgoing, friendly, I speak clearly and lip read like a ninja and I was still terribly isolated in school.

14. I also know that some deaf people believe that you should be in a school for the deaf. I hated the experience I had with schools for the blind, and it seems sad to me to think of deaf people being stuck in their own segregated school because nobody wants to be friends with them.

I don’t think it’s friendship that is the impetus for Deaf schools. I think it’s language.

I think people who use ASL as their primary means of communication prefer Deaf schools because the quality of instruction is potentially higher. With instructors qualified in both ASL and the subject, and with the ability to freely converse with classmates, Deaf schools seem pretty ideal.

Deaf schools also build Deaf community, and Deaf communities are vital as we live in a hearing world.

15. When I had a braille teacher, I felt like she overstepped her bounds a lot and she was watching every move I made. Is it the same if you have an interpreter?

I think it can.

I haven’t had that many interpreters and I didn’t use them in school, but I have definitely noticed that there is a range of expertise, personality and professionalism with interpreters!

One thing that happens a lot is when people don’t talk to the d/Deaf person; they just talk to the interpreter, it’s like we are not there or something.

16. When someone is absent, no one cares that I took the special ed bus to school, and when the bus driver was absent, they were supposed to assign a substitute bus driver, but they would always forget to pick me up or they would pick me up really late. Would that happen if you had an interpreter where the interpreter just calls in sick one day, no one cares, and there is no other interpreter and you are just stuck? Are they a bit more organized than that when it comes to deaf people?

Not necessarily; I have heard of plenty of occasions when d/Deaf people are stuck without an interpreter, but it’s more usually because the event, school or whatever forgot to request one. I don’t know how it works when a d/Deaf person has a one-on-one interpreter and that interpreter calls in sick.

17. How about if you have to have a roommate in college or something like that? How can you communicate with them?

I had a roommate  for a while in college, and a roommate in graduate school. I became very close friends with them. They spoke clearly for me, articulated more than they usually did with other people. They were very patient in repeating stuff.

Back then, I didn’t have things like my phone or my flashing alarm clock or my vibrating watch, so they stepped in to help me with many things.

I just got lucky with my roommates though – they were fabulous people.

18. If you have a baby, how can you know if the baby is crying or do you just always keep the baby close to you within your line of sight?

I have 3 kids and yes, I slept with each child until they were at least a year old because I couldn’t hear them cry at night. I would wake up with the vibration of them crying.

I know other d/Deaf moms use video monitors, but I was too scared to, because I wouldn’t know if they were crying.

Also, yes, I still keep them in my line of sight! That’s one of the best things about having Deaf community around me – when I am with other d/Deaf people, I know others are also keeping an eye on my kids, because for us, it’s a matter of either watching our kids or communicating. We can’t do both at the same time. I can’t watch my kids and also lip read or communicate in ASL.

It’s always a huge relief to me to be with other d/Deaf people.

19. How do you know if someone is talking to you, and then, how can you even tell them that you can’t hear what they are saying? I never know when people are talking to me a lot. I just assumed that if someone says something and no one else answers, they probably are talking to me. Or someone might say something like, the lady in the blue shirt. And I might be like, wow. Some people are really oblivious. Whoever that person is talking to really needs to get with the program and answer the question. And then I’ll be like, oh, that’s me. When I put clothes on, I make sure they match, but after that, I don’t really keep track of the colors anymore because that would be too complicated. I might remember their colors when I put them on, but then later, I might forget. It seems like it would especially be hard to do a conversation with a larger group though.

Wow, I can’t believe people will say that to you!

As long as I can see someone, I’m likely to be 100% aware they are talking to me. I tend to notice the smallest detail – the way a head is tilted, the direction of the face, the way that eyes flicker. If a person is talking to me and wants me to know they are talking to me, I notice.

However, if I can’t see someone, they will need to tap me or it will turn into one of those things where they keep saying the same thing over and over again and I don’t respond and then they wave or tap me or something and I turn and only then will it connect with me that they are trying to say something.

20. I have been trying to think about if I were deaf, what would I do if I wanted to go to a restaurant with 10 other people and be able to talk to them, but I can’t think of anything. It would be pretty unrealistic for all of them to have to write down everything they say. Maybe there is an app like the auto captions on YouTube that could listen and then show you on the screen what people were saying and then you would have to visually look around to see who is talking. I tried the auto captions on YouTube and I thought they were pretty good, but I’m not deaf. They seemed to be pretty close though.

This is hell.

I try not to go to restaurants with that many hearing people: it’s waaaaay too frustrating and hard because of the din.

You see, hearing aids pick up ALL sound, not just voices. Digital hearing aids do a better job of weeding out the background noise, but it still amplifies it to a degree. I usually need to decide if I should take the hearing aids out have have complete silence and just lip read, or if I should leave them in and battle through the background noise to pick up some sound that I can couple with lipreading.

Leaving the hearing aids out is usually the calmer option – the silence is absolutely glorious! But I do have to focus harder to figure out what’s going on, which makes me really tired. Leaving the hearing aids in means I’m way more tense with all the background noise being amplified and trying to wade through it.

Either way is exhausting.

Now, if I was at a restaurant with my d/Deaf friends who can lipread, it’s easy! I just take the hearing aids out and enjoy the silence, and we can happily talk, sans sound, just lipreading and articulating our words. With d/Deaf friends who can’t lipread, I might struggle a bit with understanding their ASL, but it’s still easier than wading through horrible background noise.

About what you were talking about with the auto-captions, I think there are apps that do this but they are far from perfect. At this point in time, it’s more difficult to decipher the gibberish the spout than it is to wade through the din of background noise or mumbled words.

Summary of the Deaf Experience:

Anything can be normal to anyone.

With enough time and repetition, anything can be normal. Aspects of life as a deaf mom are all normal to me and I don’t think much about any of it at all.

In writing this, what did strike me  was not the nitty-gritty of daily accommodation or the nature of my own deaf experience; it was simply self sufficiency, an awareness of what I need.

I think this is a very normal experience for anyone who has a disability – we live in a world that is currently built for people other than us. To function and live our lives in this world. we must develop rather astonishing degrees of awareness about our selves and our spaces.

We don’t take things for granted.

While I would love to help build a world in which all of us across the disability community can take things for granted, I grow increasingly full of admiration for the awareness that most of us have of our selves and our environment, and our deep understanding of how to navigate the spaces in our world.

This post is available in distraction-free PDF. Click here, or the button below.

Listen to the podcast of Questions About the Deaf Experience

20 questions about the deaf experience from a blind friend, ranging from 'how do you order at a restaurant' to 'how can you tell if your baby is crying'
Meriah
Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a Trekkie who likes her coffee hot and black.
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