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How Did You Lose Your Hearing?

In Deafness, Hearing Loss, late deafened, Partially Deaf on January 6, 2016 at 11:15 am

 

by Kimberly

Crumpled question marks heap

“How did you lose your hearing?” This seems like an innocuous question to most people, but as a person who hears it repeatedly, I feel the need to point out that it can be frustrating. I can see why people ask. Most of us associate hearing loss with age. I’m relatively young, so people are surprised and curious when they find out that I have significant hearing loss in both ears. The thing is, you shouldn’t always ask people about the things that you happen to be curious about.

For instance, my mom taught me that, “What do you do for a living?” is not the first thing that you should ask someone about themselves, and you should be careful about when you do ask it. Why? Some people don’t like their jobs and don’t care to talk about them. Many people don’t want to feel defined by their careers or categorized by what they do. They think that they have more to offer than just being a waiter or a postal employee. As a woman of child-bearing age, I can tell you that, “Are you planning on having children?” is question that could open a huge can of worms. What if the couple disagrees on the subject and is trying to work it out? What if they’ve been trying and are having trouble? What if they’re still unsure and uneasy about the subject? What if they really don’t want kids but are afraid to admit it to someone who might take offense? It’s nice to express interest in another person’s life, but the wrong question at the wrong time can really spoil a conversation.

So what might be wrong with asking someone why s/he suffered hearing loss? The big answer is that many of us don’t know the answer ourselves. I personally spent several months trying to chase down the cause of my hearing loss and exhausted myself in the process. I had an otologist who scared me, a rheumatologist who laughed at me, and a chiropractor who tried to get me to spend hundreds of dollars on a strict diet and supplement regime. I was on steroids for months. I got multiple MRIs. I was poked with countless needles. In the end, my hearing never improved, and I had very little new information about what had happened. I wasn’t even positive when the actual hearing loss had taken place, and that can really mess with your head. When somebody asks me why I lost my hearing, I get frustrated that I don’t have an answer for them because I’d like an answer myself. It’s especially annoying when I tell someone the very little that I do know (“It’s nerve enlargement caused either by a virus or an autoimmune disorder,”) and they start asking me probing questions about whether I’ve tried this medical test or treatment…or they start suggesting illnesses that I might have! Who needs WebMD when your regular acquaintances are happy to make you a hypochondriac?! Maybe it’s Meniere’s or syphilis! Keep those suggestions coming! But seriously, I’m tired. I don’t want to talk about it. You’re picking at a scab that I’d like to heal already.

Consider, too, that some people do know the cause of their hearing loss, and it’s still not something that they like to talk about casually. It could’ve been caused by a head trauma, chemotherapy, or a childhood illness that they’d rather not revisit. It could be hereditary, and the person may be aware that, as a result, they’ll continue to lose their hearing until they’re quite deaf. This may be a sore subject. Of course, I’m sure that there are people who are perfectly happy to discuss the causes of their hearing loss, but let them bring it up. Let it come up in the due course of conversation. Don’t put someone on the spot and make them account for their physical differences.

If I don’t want questions about my hearing loss, I guess I just shouldn’t bring it up in conversation, right? Well, it’s not that simple. Often, I need to bring up my hearing loss because I want people to be aware of it when communicating with me. That way, if I need them to repeat something or if I clearly misunderstand something, they understand why and, hopefully, are a little more patient with me. Conversations are easier and less stressful for me when others are aware of my hearing loss. It’s not always easy to know how to work that into a discussion either. Do I wait for a moment when I really can’t hear to explain, or do I try to drop it in casually earlier in the conversation? If I do the former, I run the risk of interrupting discussion at an inopportune moment, but if I do the latter, I run the risk of the person thinking that I want to start a whole discussion of my disability.

No one’s perfect at discussing hearing loss, even those of us who have it. If someone asks me the dreaded, “How did it happen?” question, I don’t hold it against that person. They just don’t know what else to say. I have a suggestion: “Is there something that I can do to help you hear me better?” That is the very best question that you can ask anyone with hearing loss. Even if our answer is, “No, I’m hearing you just fine,” we appreciate the gesture immensely. It means that you’ve put yourself in our place and thought of how we must feel. It means that you want to include us in your discussion. It means that you acknowledge that hearing loss isn’t something that happened to us so much as something that we deal with every day. I don’t bring this up to shame anyone. We’ve all asked the wrong question at the wrong time, but consider how much better everyone will feel if you ask the right question instead.

Why Not Caption?

In Accommodations for Deaf, advocating, captions, Closed Captioning, Deafness, Disability Rights, Hearing Loss, late deafened, Partially Deaf on April 25, 2014 at 5:18 am

cloud-question-mark-original

by Michele Linder

Here in the United States, we enjoy a high rate of captioning on television (though we still have our frustrations when we come across an exempt program or one where the rules have not been enforced), but New Zealand’s rate of public broadcasting captioning is less than 25%, a level well below some third world countries.  Unfortunately, you’ll find those who argue vehemently as to why a higher rate of captioning cannot be achieved.  You’ll even find people who make excuses as to why captioning shouldn’t be provided.

BUNK!

I was recently asked to write an article for Caption It New Zealand.  Below is the article which first appeared on their website:

 

Why wouldn’t you caption? “…when you look at the adverse effects of exclusion, and consider the very weighty costs to our society, clearly, the benefits of providing captioning far outweigh any monetary cost incurred to provide it. Captioning truly is a bargain”

April 18, 2014

by Michele Thomas Linder.

In my personal advocacy efforts for captioning, in all forms needed, the one excuse that is offered most frequently is: Captioning is cost prohibitive — “It costs too much.” and/or “We don’t have the funds.” Those failing to provide captions are most concerned with who is going to pay for them. When I hear those excuses, my response is always to point out that the focus should be on the investment and benefit of inclusion and accessibility. Because, when you look at the adverse effects of exclusion, and consider the very weighty costs to our society, clearly, the benefits of providing captioning far outweigh any monetary cost incurred to provide it. Captioning truly is a bargain.

Keeping people with barriers dependent on others — some negative people think those with disabilities should rely on their family and friends for assistance, but that’s not even possible for some as they may be isolated without family or much connection to the outside world in their social life. It’s simply not a realistic solution — robs them of their self-worth, first and foremost.

In a broader realm, it’s not in the best interest of society, as a whole, to force people with barriers to depend on others. One way or the other, dependence comes with a cost and we all pay for those dependencies whether we think we do, or not. It makes so much more sense to pay, monetarily, for providing what someone needs to remain independent than to have them draw on public assistance or government, which is what excluding them often forces.

The World Heath Organization cites the number of people with “Disabling hearing loss refers to hearing loss greater than 40dB in the better hearing ear in adults and a hearing loss greater than 30dB in the better hearing ear in children.” to be 360,000,000 worldwide. That’s a huge slice of the world population to limit by not providing access to communication.

Too many in our society focus on not wanting their taxpayer dollars to pay for things that don’t directly affect them, and they might even think those asking for accommodation feel as if they are owed something by society. Also, unless you are deaf yourself, you might not understand how limiting that particular barrier is, however, it is worth noting that disability is something that can happen to anyone, in an instant. But if you woke up tomorrow not able to hear you would want accommodations in place so that you could remain as independent and informed as you were the day before disaster struck. That is guaranteed. Not because the world owes you anything, but because it makes sense in the broader picture, and because it’s the right thing to do.

Accessibility is an investment which works to remove the barriers of an increasingly complex and competitive world, allowing those who cannot communicate in traditional ways to participate, contribute and compete on the same level as everyone else. Quality and uniform captioning enables millions to remain independent and vital in a world that too easily justifies excluding them by placing more value on the monetary aspect of what a thing costs, rather than on what providing it accomplishes.

When looking at captioning in this light, why wouldn’t you want people with barriers to be a part of a productive society by including them?

Michele Thomas Linder is an active Advocate of Captioning in the USA. She is profoundly deaf and is currently living in Munich Germany.