The Quiet Musings

What being deaf means to me

- November 20th, 2017 -

I noticed there is a lot of misunderstanding when I tell someone I’m deaf. Most people don’t grasp what it means. They assume I’m just hard of hearing. I think the confusion stems from language use. A lot of people who are hard of hearing say they are deaf. People wearing hearing aids say they are deaf and don’t say they are hard of hearing.

There are also many degrees of hard of hearing. Some people have difficulty with lower tones, others have difficulty with higher tones. Some can use the phone, others can’t. Hearing aids or a CI don’t “cure” ones hearing. They just make it possible for someone to hear a bit better.

In my case, I was probably born with small hearing loss. It was first noticed when I started first grade. By the time I was in high school I started wearing hearing aids.  In college I was wearing the “strongest” hearing aids available at that time. My hearing progressively decreased over the years.

Besides being hard of hearing, I also suffer from tinnitus. I think I always have, I don’t remember ever not having tinnitus. There is always phantom sounds going on in my ear/brain. When I focus on it they seem louder or when I’m stressed, laughing, etc. Any impulse can strengthen the tinnitus.

At 26 I was profound hard of hearing and then I became sick. I was given some heavy meds which killed the little bit of hearing I had left. First my right side hearing “died” and later my left one. Since December 2007 I’m 100% completely deaf. Which means I don’t hear anything at all. Not even with the best hearing aids.

Becoming deaf later in life the way I did is called: late deaf. For most of my early life I went from mild hard of hearing to profound hard of hearing and then deaf. I’m not sudden deaf. That is a term for someone who had good hearing and next they lost it all.

After losing the rest of my hearing I chose not to get a CI. The risks of complications are higher with my medical history. And there aren’t any guarantees how well you can hear after getting a CI.

I’m a loner in the world of hearing and deaf. I grew up hearing and know the pleasure of group conversations, sounds of nature and music. I became late deaf at 26 and know what I’m missing. People who were born deaf have their own community, culture and their main language is sign language. Till today I have yet to meet someone who like me became late deaf. Who can’t hear anything and who don’t wear hearing aids or a CI.

The hearing assume I can get along 100% on lip reading. While lip reading only covers a max of 40% of what’s being said. The deaf and/or hard of hearing expect me to be able to use sign language.

Sign language is hard for me to keep up with. I’m not surrounded by people who sign. It’s like taking up a complete foreign language like Mandarin or Japanese. And only being able to put it to use once or twice a year. You can hardly become fluent like that.

There are sign cafe’s and I’m looking forward to going. But I’m not someone who is into socializing a lot. I’m an introvert at heart. I get drained fast when in a crowd of people. I don’t see myself going every week.

The whole crux of this is — no one deaf of hard of hearing person is the same about their hearing or lack of it. I am an example of that. We should never assume, expect or demand.

If you don’t know something, just ask. I rather someone ask me than assume.

Photo of two people with their smartphone. Text on photo says: Keep calm and type it on your smartphone

 

The social conundrum of being late-deafened

- July 16th, 2014 -

Coming December I will be deaf for seven years. Seven years of daily intense lipreading, weird looks, impressed looks, comments, confusing my deafness with my IQ level and so on. I also learned a lot about people. Nothing like a disability to know right away who you want around you and who you don’t. A lot of things changed afterwards, I had to find work again and I started living alone for the first time. Before I always lived with roommates or family.


Late-deafened (or latened deaf): A person who lost his/her hearing as an adult after being hard of hearing for most of their lives. Most late-deafened people were raised in the hearing community and do not use sign language, because they connect more with the hearing world.

Because I was always hard of hearing lipreading came naturally to me. I was doing it since I was a kid. Once everything went completely silent I was able to lipread even better than before. As a matter of fact I was so impressed with how I well I could understand my sister that I didn’t even grasp the consequences of going deaf on the moment itself. That came later.

I’ll save the details of getting work and living alone as a deaf person for another post or story if we ever meet up. Obviously the living thing isn’t that a big deal, I’m just never bothered by sales people at the door.

Being deaf and depending on lipreading takes a toll on your social life. Especially if you become deaf in a period of your life that you are starting over again due to moving and changed life situation. The good thing is I already knew my current friends well so I could understand them pretty good, same for my family. Most of them forget I’m deaf at times. But meeting new people is a whole different thing.

Think about the times you met someone randomly at a random place and you did hit if off and became friends. Now imagine you were deaf, would it still have worked out? Now admittedly I have a few more blocks in my way, I’m an introvert(although I do tend to talk a lot) and I don’t dare strike up a conversation with strangers partly because of my deafness. Imagine how it would go and went, because some days I wake up feeling like Superman instead of Clark Kent and I’ll do something daring.

Me: Hi!

Nice/cool person I want to know: Hi!

Me: *insert situation appropriate question here* and by the way I’m deaf and I lipread, so can you please speak clearly?

Nice/cool person I want to know: *answers question of which I understand about 1/3 of it*

Me: I’m sorry, I did not get that fully, mind writing it down?

Now this sounds pretty straight forward right? But don’t forget, even when you are not deaf you are already struggling with fear of rejection, etc. A lot of the time people give up talking to me when they find out it takes some adjusting to communicate. It can be hard to get people to ease up and relax. I try to keep my questions contained so I don’t get long answers to make it easier.

The thing about lipreading is you have to ‘learn’ it with each new person you meet. Everyone has a different way of speaking, unique facial expressions and body language. I learned in this past seven years that the more I interact with some the better it goes. It will never be 100% but way better than the first time.
It takes some time and adjustment. Some people react instinctively and use hand signs which helps a lot. These people always get a star in my book.

Some facts about lipreading

  • I understand about 30% of what is being said in Dutch, a lot of it is guess work and anticipation. It doesn’t help that the language has almost any to none obvious articulation like Spanish or Papiamento, my native language.
    • It happens regularly that I’ll just nod along, gamble and say yes or no. I get so mad at myself when I do that. Because it means I give up and don’t say to the person “can you repeat that, please”, especially if I have already asked them to repeat more than once. Nobody likes to be a burden.
  • I can lipread like 70 to 85% in my native language which is very high but also depends on if I know the person for a while.
  • It’s very intense mentally and on my eyes, after a full day of lipreading my brain starts turning to mush and I can barely understand anything.
  • People who have a beard or mustache are almost impossible to lipread.
  • People who mumble, don’t articulate and talk fast are also a no go.

Before I would just ask someone for a coffee(or something) to be able talk without interruption. This way I can figure if it’s worth it to give a try and vice versa. But that doesn’t work either, because of ego. People immediately assume you want something more from them beside getting to know them.

Real case example of communication

One of my co-workers is a philosopher and he also has a beard. We have a lot to talk about and we have talked a lot, about philosophy, psychology and journalism. When we are out of the office he just types on his phone what he wants to say. Sometimes I wonder what people think when they see us: one person using his phone and the other person talking. Good thing I don’t care what people think. In the words of Wanda Sykes: “I’ma be me”.

When I’m out with co-workers last minute, I just take my macbook or iPad along and someone will type for me what’s being said. Not verbatim but enough that I can follow. If it is a planned outing I book a text interpreter. Which is someone who types everything verbatim for me, they have an ethic code which includes complete confidentiality.

People who “have” to interact with me a lot, learn how to communicate with me and soon they don’t have to think twice about it. I also learn to lipread them better than the first time we met. In a casual situation no one “has” to, it’s harder for me to show to others the person I am beside a deaf person and for me to get to know them.

Just recently I came across this weblog post about someone who went deaf for a day to experience what it is like. I highly recommend this read, even I was like, “oh yeah, that is hard”. Deafness has become a way of life for me that I don’t always think twice about it, except when I’m having a bad day.

If you have any questions about my deafness or deafness in general hit me up at darice {at} darice.org, Facebook or Twitter.

Just remember, if we get caught, you’re deaf and I don’t speak English.