Monday, April 16, 2012

The Ongoing Misconceptions

I already talked about this subject in a previous post in detail but a recent article reminded me that this is still very much a passionate issue in the world. What am I talking about? The marketing and cultural debate around Cochlear Implants.

The news side of NPR last week posted an article entitled "Cochlear Implants Redefine What It Means To Be Deaf".

Unfortunately, it reads like a bad piece of Oralist propaganda and this angers me. I generally respect NPR and enjoy a lot of their articles. As a bonus they usually even supply transcripts of their audio interviews posted online. This one though is badly researched and I can't even call it a one-sided view. It is worse than that. Not only does the article gloss over any and all negatives about Chochlear Implants, but turns into a marketing promotional. This is actually a disservice. It confuses people who don't know anything about this technology, it confuses parent's trying to make decisions for their children, it makes it harder for employers to understand the issues, and it punishes the Deaf community and HH people in general by presenting false information and false expectations.

I'll give you an example. The NPR article interviews people and represents an implant as restoring 100% of hearing ability. Society has already heard enough about these implants to think they magically restore your hearing to "normal" levels. This reaffirms that and says, yeah, look 100% hearing with one simply little device, amazing! I don't blame people for asking things like, "Why don't all Deaf people have this, I mean, who wouldn't want their hearing restored?" the problem is that that is a false expectation. Go ahead and read the Facebook comments to see the reactions. The Deaf community is annoyed and the hearing people are completely confused as to why. If it were true I might be tempted to ask the same questions myself. Implants don't give you 100% hearing. They are like fancy hearing aides. In profoundly Deaf individuals they will restore some ability to hear sounds. Partially Deaf people will gain some ability to hear more and it isn't in a natural way the brain is used to. Even after conditioning the brain it isn't 100% like the article alludes to. Even ability to hear sounds doesn't equate ability to comprehend speech, they are related but different things.

If you read the article very carefully between the lines, you will notice that these Deaf kids with implants they are championing are in special schools. They are learning the tenants of Oralist teaching. Learn to read lips, talk and interact like you can hear like normal, and use this new technology. The goal is for these kids to act like normal kids in normal schools. I applaud the idea, but the technology isn't what it claims. Expectations here are that with a simply operation and device, disabled people can re-integrate into society at large with no detriment and "normal" people won't have to be bothered by the disability. Employers can employ, teachers can teach, marketing people can telemarket. Life will go on as normal.

You see it is these false expectations that are the most damaging. Deaf people want to be part of society. They have their own community, sure, but everyone has friends and family and jobs in the larger world. I spend a lot of time happily going through life as normal as I can, but what do you do when you are faced with a situation where you have to ask someone else to help accommodate your situation? Maybe repeat something or write something down for me? Do I want people glaring at me like they are annoyed with my request and asking why don't I just get those new electronic implant ears so I don't have to bother them?

Articles like this set expectations in the wrong way. It not only glossed over every single down side, it barely mentions the cost, and then launches right into how these will make people all normal again. It's bad journalism, bad research, and the repetition of this one-sided message is doing untold damage on public opinion against Deaf people.

Thursday, March 1, 2012

A Life Lesson from the Past

I have decided I need to stop researching and making such complete posts and just get some of my thoughts out here in small pieces. So I am going to try to start making typing posts a priority, with less researched content, and publish them, from start to last edit, in under an hour.

I have several pieces planed, but they are all "educational". I haven't shared much about myself lately, so today you get a story from my life. When people ask if having a hearing disability has changed the course of my life in any meaningful way, I answer "yes" and recall these events. I have been able to do a lot of things I have wanted to do and after the fact, they have obviously been God's plan for me. I have no complaints. However, as nice as the "you can accomplish anything you put your mind to" philosophy is, it isn't actually truthful. I have to accept that there are things I simply can't do or won't be allowed to do and it isn't healthy to gloss over that.

When I was in high school I was pretty active. I should mention that I did wear hearing aides in HS, but at the time my hearing was better than it is now, so there were a lot more things that I could do, including socialize. I was in marching band, several clubs, the advanced academic curriculum, and the Navy Junior ROTC program. This story is about my experiences with the ROTC program. I liked it and excelled in the "psudo-military" environment and ended up as one of the top "student officers" in JROTC. I wore a uniform once a week (I would eventually have 4 different ones), kept my hair short, had officer like responsibilities, had to stay in shape, learned military drill, and was in charge of most of the other JROTC students at one point or another. I was the captain of the rifle team and had a dozen shooting awards to my name and had a really good time doing things like rappelling, orienteering, and dozens of other things. I was sent to several "leadership training weeks" where I got to learn all kinds of interesting skills and got to tour ships, stay on-board a Navy Cruiser, and even at an Air Force base more than once. It was really a great experience.

This is a "picture of a picture" I snapped with my phone on a recent trip.
I am on the right in the dress uniform. 
When it came time to start deciding what to do after HS, I decided I wanted to go to college and pursue a technical degree of some kind. This was complicated by the fact that my parent's divorced when I was a junior and so if I wanted to go to college, I had to find my own way through grants, and scholarships. I had good grades, but not enough to stand out from the top 10% and earn those full-ride academic scholarships to the big universities. The college ROTC program was very enticing. A fully paid education followed by a commitment to be an officer in the US military for several years. Something I was not opposed to doing and with my JROTC experience already had a pretty good idea of what was involved.

I applied for Navy and Air Force ROTC scholarships first (Marines and Army being my second choice) and had some great support from teachers and administrators for letters of recommendation and the like. Then I waited. The Air Force called up and wanted to take the application process to the next step. This meant interviews, more application paperwork, psych exams, and physical fitness tests. I also had to apply and be accepted to the schools I wanted to go to that had the ROTC programs. I went through all the tests and I was awarded an Air Force ROTC scholarship to cover all of the school costs (worth maybe $100K on paper I think). I was going to become an Air Force officer, probably not a pilot, but an officer just the same. I was excited about that.

The last thing I had to do was pass a full medical, so I went to an army base about an hour away and that had a large VA hospital. I distinctly remember the audiologist frowning through the little glass window while I sat in the sound booth taking the hearing exam. They knew I had a hearing loss, but I didn't pass that test (and it wasn't worth appealing). I thought I might have a chance despite the disability I was born with. I had little problem in HS and lots of people said, apply anyway. All of the encouragement and Oralist tools I had been using all my life had given me confidence that I could interact like a non-impaired person even up to the military's standards, but no, I was out. Based on my medical exam, no branch of the military would accept me even if I wanted to enlist (although there was a very slim chance they could still draft me). I would never serve my country in that way.

I remember in the HS assembly at the end of the year they recognized scholarships and awards that each senior had earned. I stood up for what seemed like ages while they read off a long list of scholarships and awards. It sounded like I had earned more than most of the other seniors in scholarships (excepting the girl who got a full ride into Juliard in NY) and there was a bit of a collective surprise from people actually listening. My guidance councilor took the stance that, "You earned the scholarship so you deserve to be recognized, you just can't use it." I felt it was a bit misleading though.

This was the first time in my life that a serious decision had been made for me, not because of who I was, what I did, and the choices I made, but because of what I was. I sympathized with all the Americans who historically had been denied military service due to their race or color. I know a lot of people are denied by the military for various health reasons, like I was, and I understand this. I wouldn't want to risk anyone's life because of my disability, but it was sobering for me, as a teenager, to realize the implications.

I graduated a few weeks later and had no idea what I was going to do with my life. I couldn't afford any major university. My only option seemed to be "stay and work".

My parent's divorce did come back to aid me though, I only had to base financial aid on one set of income taxes. My disability did too. The state Vocational Rehabilitation office would also help cover education costs. I found out a few weeks after graduation that a good university on the other side of the country (that I applied to on a whim) was willing to offer me the equivalent of in-state tuition, to be supplemented with a few grants, work study, Voc Rehab, and loans. This was my only good option and I took it. It seemed to be the direction I was supposed to go.

A few weeks later I was on a plane, with an overstuffed suitcase, on my way to college to study computer science. Not until Facebook was popular did I even learn what had happened to most of the people I was friends with in HS. I would never come back home in any meaningful way. I grew my hair long and forgot all about the military.

Oh, and the first day of class (8:30am math, ugh) I plopped down next to a cute girl and tried to pay attention. I would marry her 4 years later.

Thursday, February 2, 2012

Flying Deaf Defying Spectacular!

Actually, this is mostly just about the experience of flying on a commercial airline as a deaf individual, but that would be a boring title. In the future I might explore more about getting a pilot license while deaf as well.

Flying will be so much more fun when I have my own plane right? 

This week, I have had the unenviable task of organizing a cross-country plane flight on short notice to visit my ailing grandmother for the last time. I have no particular fear of flying, but this would be the first time in about 15 years that I have flown alone and the first time navigating the airports since my hearing loss dropped into the profound range.

I would be flying alone, so at least I didn't have to constantly pose and smile. 

I spent some time while waiting for planes and flying to document some thoughts and describe the experience of flying from a Deaf perspective or in my case, Hard of Hearing. Perhaps you will find it interesting and possibly helpful if you have to do the same thing yourself or help someone else plan a similar trip.

Step 1 - buying tickets.
The Internet has made booking flights much easier. I remember in years past being stuck on the phone with a booking agent going back and forth about flights and times and costs. While there are some benefits to dealing with a live person, I prefer the internet. I checked a few flight search sites, but I ended up using my old favorite because they have a feature I love, the flight cost matrix. You can set the search to look for flights over a range of 5 days and then see how your choice of days will affect the cost. I saved $100 by traveling on Tuesday instead of Monday and it only took a single search to discover that. I can't imagine searching every possible day with each airport option to find the best price, it would take hours. Orbitz also does aggregate searches across all domestic (and international) airlines so their is no need to check them all individually. Despite three airports all having delays due to winter storms and ice (this is all taking place in January), the storms blew past and I was able to find flights in budget and with decent timing.

The point is though, I was at no disadvantage buying tickets because of my hearing loss. It was quick, cheap, and I had all the information I needed, even about the hidden fees and baggage costs. It was all right there and easy to find.

Step 2 - packing.
After checking the airline for baggage constraints, bag size restrictions, and checked bag fees (yes it was $20 if I wanted a checked suitcase). I ended up just doing a single carry-on backpack and a small netbook case. I had to do the mandatory Federal Transportation Security Administration (TSA) website check to review their security constraints and lists of items to avoid packing. These are the people who are responsible for airport security and scan your bags and make you go through the metal detector. New to me was the restrictions on toiletries and gels and the restriction on liquid anything. The website was clear though and really following the "3-1-1 rules" wasn't hard at all.

My suitcase is not this cool. 

This might sound anti-social, but because hearing loss is largely about overcoming communication issues with other people, the best thing to do in my mind is to be prepared so you don't have much need to communicate with the airport staff. Know what they need you to do and what they would tell you if you asked. Even with all the bad press the TSA got last year I wasn't actually expecting a bad experience, but it doesn't hurt to be prepared.

A little gem I discovered was that they also have a section for "Travelers with Disabilities and Medical Conditions" on their website. They describe working with various disability groups to ensure a smooth process. I found the Hearing Disabilities page to be encouraging at least. To their credit, the Hearing Disabilities section gives a good run down of how you can expect the TSA Officers to treat you. If I wanted to ask them to write something down or find an ASL interpreter, or simply look at me and talk clearly, the website at least gave the impression that they would. This is nice because my experience with local law enforcement shows that this isn't always the case, peace officers can become very annoyed at communication difficulties.

One other notable thing I learned: you don't have to take out hearing aides or similar devices to go through the metal detector, in fact they don't want you to and they say that the x-ray machine won't damage them. Good to know.


I didn't have any issues, the few times they had to tell me something I was facing them and they spoke clearly or I asked them to repeat it. After reading the "How To Get Through Line Faster" advice, I was prepared and did everything properly (lay out laptop, take 311 bag out of carry on, take off shoes, empty pockets and belt into carry one beforehand, etc.) so I waltzed right through the metal detector and bag x-ray process in about 2 minutes. No issues.

Step 3 - Boarding and traveling.
One thing I often forget about is the inability to comprehend intercoms. I told the airline people at the boarding gate that I couldn't hear their announcements and to let me know when boarding started and any flight information that was important (like delays). I also make a point to ask "is this the correct gate," as rarely, but occasionally, a flight is moved to a different gate and since I couldn't hear the flight number announced over the intercom, I always double check. The larger airports had this simply displayed on a TV behind the counter at the gate and was easy to read.

They often just told me to, "board whenever you want to", so that was really nice and I often got on near the start so I didn't have to jostle bags around anyone. That might vary by airline. The flights I was on didn't have first class or special seating anyway.

The in-flight safety speech they always give is pretty well acted out with understandable signs and hand motions, it's obviously designed that way. It is accompanied by the classic picture reference, but I was one of they few who even paid attention or read the pamphlet anyway (mostly just so I could blog about it). I think most people already know about the seat belts, emergency exits, and seat flotation cushions.

A picture of those pictures.
The beverage cart was the normal exchange of "I can't hear you over the noise, do you have a coke?" over the background noise of the plane, but I found a menu/drink list behind the seat, so I didn't have to ask for the list of choices.

Did you know they changed the uniform since I was a kid?

I also found out the hard way that I am pretty susceptible to changes in pressure. I had some gum out for the take off and it worked fine in keeping my ears clear, but on the landing, I didn't chew any. I got off the plane at my destination and I couldn't comprehend any speech using my hearing because my ears were so "plugged" and wouldn't pop. So, for me personally... chew gum going up and on the way down.

One last thing worth mentioning.
When I purchased the tickets online there is a disability declaration among the drop down menus. It listed things like blind, deaf, wheelchair accommodation and a dozen other things. I opted not to check "Deaf" as I thought as I was only partially deaf I probably didn't need any special consideration and I don't really know ASL yet. In retrospect, I will probably check that next time as on the plane, and with the lack of ability to hear intercoms, I was functionally deaf to anything the airline was trying to tell the passengers. If there was an in-flight emergency, they would have to tell me in person or I would just have to watch the the  passenger's reactions. If I travel with my spouse she would have the unenviable job of listening and translating the announcements. I might do some more detective work and find out what checking that box during ticket purchase actually means.

Window seats are pretty awesome when the sun rises over the mountains.

Future upgrades?
A few things the airlines could or should do that I would like to see in the future. There were TV's in front of every sea on all of my flights. Those didn't have subtitles, so even if I did want to pay the fee ($6-$8) to watch it, I still couldn't understand it. They need a subtitle toggle button to the controls. A better idea though would be for the pre-flight announcements and flight updates that are broadcast over the intercom to be broadcast on these video screens in text. Just set a special in-plane channel, even if it was all just pre-written stuff the stewards can select off of a touch screen control back in the cabin area. It would be useful. If there had been an emergency announcement, I wouldn't understand it. Even if the stewards did know I was deaf, would they come and inform me in an emergency?

Tiny little TV. I turned mine off. 

Final Thoughts:

I don't yet know enough sign language to use an interpreter and in quiet ideal situations I can read lips and understand some speech, but I found the best order of business was just to sign "deaf" then ask "do you sign?" in ASL and as I am functionally deaf in noisy environments, they treated me as such and I was fine with that. I didn't once meet anyone that knew ASL though among the security, airport, and airline staff.

Fortunately, everyone I dealt with was very professional (as they should be) and I didn't have any issues with anything. I imagine if I had to work out a ticketing problem or baggage issue it might get annoying, but I didn't and that was a blessing.

So, I hope that helps anyone planning a trip with a hearing disability. Once again, the Internet is your friend. Book online and get text/email updates on the flights, go to the airline's website for baggage information and the TSA's website for specific info about going through security and how they are trained to respond to a disability. I had no problems. Someday I hope to travel internationally and it will be interesting to see how a language barrier might stack on top of a hearing disability when flying.


TSA: Travelers with Disabilities and Medical Conditions
TSA: Hearing Disabilities
Common Airline Baggage Guidelines

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