What follows is a repost of a blog I did a number of years ago (around 2014 as I recall) about the fact that I am totally deaf and how that impacts my life.
Be sure to read to the end for a COVID19 update.
>> Original Post <<
Depending on the methodology used, it’s estimated that someplace between 0.15% and 2.0% of the American population are “functionally deaf”. Of those numbers, about 65% lost their hearing after age 65. These numbers are problematic, though, because no studies clearly define “deaf” and the numbers are very small. The CDC estimates, and WHO statistics support, that less than 0.03% of children are born deaf.
This means that the vast majority of deafness is related to injury, disease, or age. It’s well known that exposure to loud sounds can damage hearing. Infections can damage the mechanics of hearing. As mentioned above, aging causes a “normal” decrease in hearing as well.
No matter how you slice it, despite the lack of hard and fast data, the fact is that people who are completely deaf—as opposed to “hard of hearing”—from a young age are very, very rare.
That makes me a member of small and exclusive club—I’m totally deaf and I have been since birth.
Ever wonder what that’s like?
I’ve never heard a bird sing. I’ve never heard my children laugh or cry. I’ve never heard Jack tell me that he loves me. I’ve never heard Mozart or the Beatles. I’ve never heard the sound of the wind in the trees or the surf on the rocks. I can’t hear my cats when they purr or meow. I have no clue what my dog’s bark sounds like. If, by some miracle, I could suddenly hear, I wouldn’t recognize these things. They are all foreign to me, outside of my experience.
I can feel vibrations, sometimes through objects like tables or the floor, and sometimes through the air. Using that technique, I can “hear” music. I feel the beat and the rhythm, and I can even make out notes if I can touch the speaker or instrument. When Jack tells me that he loves me, I can put my fingers on his lips and feel his breath. I can make out the motion and the flow of air, and that lets me understand what he says. In a similar way, I can touch his larynx and feel the vibrations, but that’s no substitute for really hearing those things.
Imagine not being able to hear your baby crying. If you can’t see your child, you don’t know they need you. You can’t tell when they are in trouble or when they just want a hug. Imagine never hearing your baby say “Mama” for the first time. Consider never hearing your child and the love of their life exchanging their wedding vows.
As an aside, when I was pregnant with JJ (our youngest), I was terrified that he would be born deaf like I was. While JJ learned to sign before he could talk and he’s the only human family member able to keep up with my signing, he has perfectly normal hearing.
Think about everyday life for a moment. Have you ever come close to being hit by a car, only to jump out of the way at the last minute because you heard the driver honk the horn? How many times has a friend called out to you at the mall and you’ve sat down together for coffee and had a wonderful, chance meeting?
Perhaps it’s because of America’s fascination with litigation, but we tend to put a value of the loss of certain functions. For example, if a worker loses a finger in an industrial accident, that’s worth a certain amount of money in either a settlement or disability payment. A thumb is “worth” more than a finger. Senses are a problem because it’s hard for the lawyers and accountants to put monetary value on them. In general, sight is worth more than hearing, hearing more than smell, smell more than taste, and taste is worth more than touch.
So the question is if I, as a deaf person, am entitled to some kind of government support.
In my opinion, speaking for myself, no.
Over the years, I have learned to deal with my so-called disability. I can support myself. I was lucky enough to have parents who struggled to get the money to get me into classes and therapy to learn how to cope. I don’t need—or want—any help from government.
As for others, who can say? It is an individual issue that must be evaluated on a case-by-case basis. Some people will need more help than others. The trick is to figure that out and do the right things.
I’m proof that with the right support and encouragement a person with a disability can be successful and productive.
By the way, my official diagnosis is that I am “Profoundly Deaf”. In other words, I have less than 0.05% of normal hearing. The best ever hearing test I have ever had done came out with 0.003% of normal hearing. That number is far below the limits of testing accuracy and was, in my opinion, a made-up value provided by the audiologist.
There are some advantages to being deaf, though.
It makes it very easy for me to ignore distractions. When I write, for example, I don’t care if the TV is blaring away in the other room. I can’t hear when Amanda and Debbie are having one of the knock-down drag-out fights sisters are famous for. If the dog is busy raising hell to run a mountain lion off from the yard, I miss it. It doesn’t bother me at all.
It’s also easy for me to ignore irritating people. You know the ones…they find some subject—usually the most boring topic in the universe—and go on and on about it. I just stop looking at their lips.
And let’s jump back to not being able to hear your lover…
In my experience, any person who actually cares about me has learned sign language, at least enough to communicate with me. As you walk together, holding hands, you can make signs in the other person’s palm. OK, the information being exchanged is probably not always appropriate for public display, but no one else knows what you’re saying to each other. Yes, it’s fun!
And there is nothing like lying together and feeling his breath against your neck as he whispers that he loves you. The feel of his fingers on your body as he spells out words of love on your skin is far more sensual than actual words.
I guess what I’m trying to say here is that there are times when words only get in the way.
I know you’re all wondering, so…
One of my favorite things is when I’m working. I’ll be sitting at the computer in my office, trying to get some scene in a book just perfect and having little luck at it when Jack sneaks into the room. OK, he doesn’t have to “sneak” since I can’t hear him come in and my back is to the door. Anyway, he’ll come up behind me and touch my neck and shoulders, signing to me. He’ll spell out how much he loves me and how much he wants me. He tells me how beautiful I am and how he can’t keep his hands off of me.
All right…I’d better stop now or I’ll never finish this!
So, am I “disabled”? That depends on your definition. Most people would say that I am, but I disagree with them. I see myself as having opportunities to do things that people with normal hearing can’t do. After all, aren’t challenges simply ways that we can learn to deal with new opportunities?
Maybe I’ve had more opportunities than some people, but I’ve had less than others. No matter. I wouldn’t change a thing. I am who I am, and my deafness has been a huge part of that evolution.
Did I mention the funny things that happen because I’m deaf? There are a lot of them…
I have what most people would call a “speech impediment”, a thing not at all uncommon to people with serious hearing loss. That’s because I don’t know what the word “elephant” sounds like, so I do my best based on the rules of language and sometimes it comes out sounding strange to other people. If you’ve ever seen and heard Marlee Matlin on TV or in a movie, you know what I’m talking about. Other than that, most people don’t even know I can’t hear…at least as long as I can see their lips.
It usually happens at either a restaurant with the servers or in a shop with the sales people, but they will figure out that I’m deaf. They will react the same way as most other people and start using what I like to call “Deaf Idiot Speak”. You’ve heard it, I know. They talk very loud, almost yelling, speak very slowly, and stop using certain parts of speech. Instead of asking if I’d like fries with my burger, it comes out more like, “YOU WANT FRIES?”
I usually just ignore it and go on, laughing inside.
Sometimes I get mad about it, though. I’m deaf, not stupid. One thing that really irritates Jack is when I get sarcastic with these people. I’ll stop talking and start signing at them. Things like, “You’re a dumb-ass.” Or worse.
Other times, I mess with them. “UHG! ME WANT FRIES!”
Luckily, most of the places I shop and many of the restaurants we go to know me. This doesn’t happen at those places. Even the local WalMart is good about it. I mean, you’d expect the sales people at Tiffany’s to adapt since I’m going to drop some serious coin on bling, but WalMart sales floor staff? But they deal with it very well when they see me in the store.
The one thing that I guess will always amaze me is the number of people who think that they can somehow catch deafness from me. It’s not infectious and you can’t suddenly go deaf by being around me. But some people seem to think they can. You can see it in their eyes…they are uncomfortable and want to get as far away from me as they can as fast as they can. You’d think that today people would know better.
There really is nothing I can’t do because of my deafness. True, there are some things, like driving, that I shouldn’t do, but there’s nothing I can’t do.
Yeah, driving…I like to drive. I also like to ride my motorcycle. I don’t see it as dangerous, but the state of California disagrees with that, and their position is the only one that counts. Their cutoff is 2.5% of normal hearing. I made a promise a few years ago to Jack that I wouldn’t drive or ride anymore, at least not on the public roads, and I’ve stuck to that promise. It hasn’t been easy, though.
I like to skydive, too. It wasn’t easy to learn since I can’t hear the instructor’s commands, but I learned. I do sometimes wonder what the rushing air sounds like as you’re in free-fall. I’ve made some pretty crazy jumps over the years, too, things that you should never try unless you’ve got a lot of jumps under your belt. Like jumping from a WWII bomber. Or an airliner. These planes aren’t made for jumping out of, and the turbulence and protrusions on the plane make it dangerous. On the other hand, I can’t hear people telling me how dumb it all is.
The roughest thing about being deaf is using the telephone. In short, I can’t. Sure, there are the TDD systems and similar devices, but it isn’t the same. At least I think it’s not the same. How would I know? I’ve never used a real telephone. The Internet has made communications easier with text chat, e-mail, and the like. With those systems, I can talk to anyone. Maybe that’s why I’m such an Internet junkie.
You’re probably wondering what it’s like being deaf. Not just the brief things I’ve listed above, but what is it really like. It’s not bad, but it’s not good, either. I have no regrets nor do I mope about it.
It’s just me.
>> End Of Original Post <<
>> COVID19 Update <<
Here we are in the first half 2020, and COVID19 is running amok. While it’s far too early to say with certainty, we may be nearing the top of the curve.
Here in San Diego County in Southern California, pretty much everywhere, face masks or other coverings are required for public safety. Even though a plain vanilla mask will do little if anything to prevent YOU from getting the virus, the mask WILL prevent you from infecting others. There are a lot of good reasons to wear a mask including: It will protect others, it is common courtesy, and it’s the law.
And please don’t start waving the flag and misquoting the Constitution to me. First of all, I can assure you that I know the Constitution far better than 95% of the morons protesting and breaking the law. Secondly, your right to the pursuit of happiness ends when it interferes with my right to life. So just shut the fuck up.
This is a difficult and stressful time for all of us. Some of us can stay home and isolate to a large degree by virtue of either the industry you work in effectively closing down for a time or, as in my case, you’re able to work from home with a good level of productivity. But we have to go out from time to time for food and other needed things. So we (the ones with any amount of common sense at all) put on our masks and head out to the grocery store to do our shopping.
Now, I want you to think about something…in other words, I want you to put yourself in my place for a moment.
Unless you are using sign language, even just generic ASL, I have no way to understand what you are saying because the mask you are wearing to protect me prevents me from being able to read your lips.
Yes, sometimes I can get at least a feel for what’s going on from your eyes and body language, but I have no way to know for certain what you are saying. Luckily, I’m never alone because, as I mentioned above, I don’t drive. Usually I’ll be with Jack or our oldest daughter Amanda, so they can translate for me.
But while we are all practicing social distancing and we all no doubt have some feelings of isolation, I (and other deaf people) end up being effectively in an isolation booth and sensory deprived.
Since this all started a month or so ago, I’ve been trying to put my finger on why it all has me a bit edgy. It wasn’t until a short conversation I had with another writer on Twitter the other night made me realize it is that sensory deprivation that is bugging me. For the first time in my life, I actually feel like I may be, possibly, disabled.
This is something I need to address in my own mind, and that will be easy for me now that I know what’s happening in my head. But I worry about the rest of the deaf and hard of hearing people out there.
Almost everyone who has hearing loss reads lips, and I would bet that 90% or more don’t even know they do it. It’s just something they learned to do that helps them understand what’s being said.
Guess what? They are in the same boat I am. They can’t understand what’s going on and they may not even know why.
I can only guess, for obvious reasons, how frustrating it is for hearing people to be asked over and over to say something again. That has to wear on your nerves. I know it would mine.
But I ask you to stop and think…maybe the person asking you to repeat yourself can’t hear you. Are they an older adult? If so, they likely have some hearing loss. Glance at their ears. Are they wearing a hearing aid? Another tell-tail is to watch their body language…do they lean towards you or turn their head as you speak?
In other words, be situationally aware.
If you think they can’t hear you well, think of what you can do to help. Speak louder. If it’s just the two of you, move back to maybe 10 feet and take off your mask so they can see your lips. Type your words on your phone and hold that up for them to read. Grab a pen and paper!
And lastly, I’d like to ask you to think about the older folks in your neighborhood and how you can help them. Many of you are already checking on those people, but remember they may be hard of hearing and, due to that, they are even more isolated than you.
Sensory deprivation is a bitch.
Hang in there, do the right things, and we’ll all get through this as long as we help each other.