My Perspective of Deafness

Ears1In case you don’t know me, I am deaf. Well, technically, hard-of-hearing. I can hear, but it’s really hard to explain, except to people with musical backgrounds. You can explain to a musical person that you don’t hear some pitches or frequencies, and they understand. They don’t nod their heads with blank looks in their eyes if you start explaining how many decibels louder a sound has to be for me to hear it, if I am even capable of hearing it with amplification.

A lot of people also seem to think hearing aids work like glasses or contacts, in that when you wear them, everything is as it should be, and they ignore the fact that the underlying problem that causes you to need such things does not go away. Nothing is a magic wand. Even cochlear implants, which are not for everyone, are not a cure. After all, it’s a battery-operated electronic device, just like a hearing aid, and the deafness doesn’t go away when you use it. It’s still there, and you’re still deaf.

How does my deafness affect me in my everyday life? Well, first, I’ve noticed that it gets worse as I get older, and it’s documented every time I get a hearing test to get my hearing aids updated or replaced. I’ve lost maybe a third more of my hearing so far in my adult life. Believe it or not, it’s kind of hard for you to notice yourself that something’s missing. Usually someone has to point out to me that I didn’t hear something that I used to hear before. I can’t hear alert sounds, sirens, smoke detectors, babies crying, small bells, cell phones, screaming. I can hear most people talking to me, but not always children. I can decipher when people are saying to me if I’m lipreading, but it’s not an exact science. A lot of guesswork and experience goes into a conversation with me, and a telephone call with someone I don’t know well is an exercise in frustration.

Frustration. Boy, the frustration.  I can’t even describe some of the depths of frustration I have had, not in English, anyway. For some things, American Sign Language (ASL) is the best way to explain something, because your expressions and body language are put into play. A lot of the frustration comes from the general population’s ignorance of how to communicate with a deaf person, or they way they react when they find out about the deafness. The “tests” to see what you can hear or lipread get old very fast. The mocking of ASL can drive me up the wall. The getting in my face or ears to yell and scream in them are painful. The suddenly talking to me like I am mentally disabled, even when you’ve known me for a while without knowing about the deafness … I have no polite (or English) words for that situation.

But you know what might be the worst thing? The pity. I’m not quite sure what the pity is for. I mean, it’s not like I have a terminal illness. And then, along with the pity, comes the apologies. What are you apologizing for? It’s not like you caused my deafness. Are you apologizing because you didn’t know I was deaf? I would hope that after the 15 years of speech therapy that is backed up even today by my family would prevent me from having unintelligible speech. I’ve worked very hard to be able to talk to everyone. I am actually offended when people act like I’m speaking another language and complain they don’t understand me when I talk to them. I know exactly how immigrants feel, being mocked in that manner.

People always ask why some people with disabilities are so angry. It has to do with the pity, mostly. I can tell you , there are plenty of self-pity moments, where you sit there and think about “why me?” and it’s hard to break yourself out of that, and outside pity just makes it worse, makes you think you should pity yourself, instead of finding a way to deal with it and to make changes to improve your life. People with disabilities don’t want to be treated as lesser people, as children, as ones who have no value or place in society. So many of us want to be be productive citizens, to contribute, but we have to work so hard to overcome pity and prejudice that it feels like a hopeless endeavor.

I know a lot of people consider a disability of any kind as the end of the world. I can tell you it’s not, but also that you can’t miss when you never had, if that makes sense. I’m often told they wouldn’t know what they would do if they couldn’t do this, that, or the other thing. I always shake my head, and tell them you adapt. You find out what you need and how to use it to help you, just like anything else. Deafness is not the end of the world that people think it is, just an alternate reality.

There are a lot of medical and technological advances that make life easier for so many people, that it is a shame to be ignorant of them. Texting was actually developed for deaf people, and it’s been in use over landlines and cell phones since as early as the 1930s. Instant messengers, video chatting, and videophones are other examples of widely-used technology that started out for deaf people. Vibrating alarm clocks, pagers, and cell phones … you guessed it. You know those fire alarms with strobe lights? Yep, them, too. The idea for those came from devices developed for deaf people to use in their houses to alert them to all kinds of things: doorbells, babies crying, telephones ringing, smoke detectors. None of this stuff is cheap, but its value is measured by the improvement in the quality of life, and not the cost.

So then, my deafness is not so much a problem that can be solved, because the type that I have, sensorineural hearing loss, cannot be cured, unless someday in the future nerves can be repaired or replaced, but instead an obstacle that needs to be hurdled. When it’s viewed that way, it’s harder to pity yourself all the time. Yes, you can’t hear things hearing people take for granted or enjoy, but that doesn’t mean your entire life is circling the drain. With all of the things available to those of us with disabilities today to improve the quality of life, there is no reason that you cannot be productive in some way. Once you know your limitations, research your options, and find another way to do things, you find that your life can be almost equal to the people that pity you, if not better. You may even come up with a new way to help yourself or others.

Isn’t that what life is all about? Adaptation, creation, and change?

 

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