The difference between ASL and SEE

There has been quite a bit of linguistic debate between ASL and SEE. Many people do not understand some of the fundamental differences nor do they understand the histories of these two different communication methods. Both ASL and SEE are valid communication choices, there is nothing wrong with choosing one over the other, yet parents and students alike need to understand the differences between them so they can make the appropriate choice for themselves and or their families. This blog post will go over just a few of those differences.

Before I begin explaining the differences, let me dispel one large myth about sign language in general, its universalism. Sign languages are not universal. While all sign languages have some things in common they differ greatly across the world. The same can be said about spoken languages; they share some things, and differ in many others. The only thing that is universal between sign languages is the use of the hands and facial expressions to get concepts across, just as the only thing that is universal in spoken language is the use of voice and tones to get concepts understood. even in countries who share the same base language, their sign languages will differ greatly. Take the United States and Britain. They both are predominately English speaking and use the same alphabet, but ASL and BSL (British Sign Language) are vastly different, even to the point of using different signs for their alphabet.

 

ASL Alphabet

BSL alphabet

 

Signing Exact English (SEE-II) is a manually coded English. There have been multiple different forms of SEE, the first of which was actually called Seeing Essential English (SEE-I). This is the form that generally isn’t used any longer, and instead of a single sign for butterfly, a person would sign butter and fly. SEE-I was created by David Anthony, who is a British deaf man who was born to deaf Parents. His first language is British Sign Language. He created SEE-I, which is also known as Morphemic Sign System, to attempt to solve an issue of poor English skills among deaf children, who were learning English as a Second Language. When Anthony created SEE-I he never intended it to be used as every day communication, he intended it to be used purely for Literacy instruction, as he had told me in a conversation. SEE-I seen as incomplete and inadequate, so others changed it, creating SEE-II. This manually coded English system incorporates ASL signs, English structure and some of its own. SEE-II (Commonly just referred to as SEE) uses word endings, such as –er, -ed, and -ing. It signs each and every word that would be spoken or written. Words such as Van, Car and Truck are signed differently in SEE-II using an initialized system, as are Beautiful and pretty, which in ASL are the same sign. Due to SEE being a manual system of English, it is also quite literal. In English, someone would say “Beat around the Bush”, and in SEE, this would be signed. If a person looks at it conceptually, they would see someone hitting something around a bush, and it could make very little sense to them.

American Sign Language is a distinct language on its own. It has its own complex grammar structure, idioms and phrases. It is separate and distinct from English. Many people to this day still see ASL as purely pointing this couldn’t be further from the truth. Other people see ASL as a manually coded English, this also is false. ASL doesn’t share a grammatical structure with English, the grammar used to interpret this post in ASL vs the grammar used to write this in English would be different, just as if I were to translate this post into Spanish. (in another post I will explain the difference between interpretation and translation, as these are commonly confused as well). ASL is also a naturally developing language, and a living language. What I mean by this is it is not a code that was developed, but was grown from the use by deaf individuals. ASL began its development when Laurent Clerc and Thomas Hopkins Gallaudet brought OSF (French Sign Language) to the states and started teaching using it. In this way, you can say ASL is got its origins from French Sign Language, (and still currently share over fifty percent of their signs) just as English is derived from other languages. Since this time, it has grown, changed and become its own distinct language. ASL uses a time, topic, comment grammar structure, whereas English uses as subject verb object structure. Just as in English there isn’t a strict rule as to how the words must be placed, the same goes for ASL. It is also important to note, ASL doesn’t use variations of “to be” like English does, there are no signs for words such as: am, is, are, or were. Verbs are also different in ASL, there is no runnING, or teachING but rather it depends on the sign as to how you signify it is a verb, the general rule is to perform the sign twice, but there are always exceptions to the rules.

While neither of these are the one way to go when instilling language in a deaf child, the important thing is to get language. There are other manually coded systems of English, such as Cued Speech. Each of these communication strategies (or for lack of a better word, languages) have their place and appropriateness. No one is better than the other, but the distinctions are important. It is important to note, that SEE-I and SEE-II are not languages themselves, but are manual systems of English. ASL on the other hand is a language on its own. There are other systems, such as CASE (Conceptually Accurate Signed English) that attempt to combine the two even further.

For more information, you can look here (http://www.signingsavvy.com/blog/45/The+difference+between+ASL+and+English+signs) Here (http://www.lifeprint.com/asl101/pages-layout/evolutionofsignlanguage.htm) here (http://www.lifeprint.com/asl101/pages-layout/signedenglish.htm) and many other places.

Adventure at the Dentists

The same day I had my left CI activate, I also made a visit to… the dentist. If there is one thing I’m scared of, its dentists. I had called ahead a week and scheduled the appointment, informed them I would need an ASL interpreter, and was told that would be no problem. Making the call was hard for me, and I was imagining how difficult it would be actually going. With my CI’s, although I can hear and understand fairly well, when I am nervous, upset, scared, hurt or otherwise indisposed, my comprehension goes from good to absolutely pitiful. For this reason I needed and wanted an ASL interpreter.

 

I was able to muster the courage to go to the dentist, it was only because a friend of mine was going with me. When I arrived, signed in, I was then informed, there would be no ASL interpreter for the first visit… because… “there was no communication” in that first visit. Not only was I scared, but now… I was livid. The one thing I was counting on to make this visit at least a little bearable was that I was finally going to be able to understand what was said, 100%… That didn’t happen. The dentist was a jerk, he talked down to me like I was a child, I only understood about 30-50% of what was said… and that was only because my friend was helping me. I decided to show him why an ASL interpreter was necessary, I turned my voice off, and started just signing, he looked petrified. He told me that they didn’t schedule interpreters for this appointment because about 50% of them didn’t happen. I informed him of other options than a live interpreter for appointments where they don’t know if it is going to happen, such as VRI from companies like Purple or ZVRS. Then I got xrays that hurt like heck and scheduled a second appointment to review. I was mad, and I was very close to not going back.

 

When I talked with my partner, who had visited this office, I was told, I saw the wrong doctor… so I called and changed the appointment to the right dentist, and hoped for the best. I told them I would REQUIRE an ASL interpreter, and informed them of the law.

 

Well, Monday I went, and… there WAS an interpreter… I have to say being able to take my Cis off, and not having to hear the drill like I did before my hearing took a complete nose dive, and not wearing my hearing aids during the appointment to attempt to understand, but being able to SEE what was said… made the appointment much much less evil. I have to go back and have a bit more done, but I finally got my front tooth fixed I damaged when I was young, it seems it was damaged to the point where it needed a root canal.

 

I have to say… it wasn’t as bad as I had thought. The best thing was being able to understand everything, and STILL be in complete silence. When I didn’t have to use my HA’s to attempt to understand what was being said while he was in my mouth, but instead could take my CI’s off and see everything that is being said, I felt much more comfortable.

 

I have another appointment next Thursday… and thankfully with this dentist at Comfort Dental, Dr. Abe Miller, was nothing like this… which is how I picture all dentists.

 

finally an update!

Ok, so I know its been a long time since an actual update, but my world has been a little crazy, and turned upside down a bit. I have a few updates… sorry for the book of a post.

1. Location 2. Ears 3. Eyes. So here we go!!!

1. Location, location, location

Weaver's Needle Hike

I have moved. I moved from sometimes snowy Colorado to the almost always hot Arizona Desert. This move has been coming for a while now, and although I was apprehensive about it at first, I’m really enjoying it, despite the heat.

I’ve transferred with my company, at a new location with a co-worker who is great, and knows just as much as I do. We have different areas of strengths, with many overlapping (the core of our work over lapping) so we push each other and educate each other, it’s amazing! My love accepted a position as an Admissions advisor for South University, and is really loving it as well! We both work within 30 minutes of our new place, so we have more time to spend together!

We moved from a 660 sqft 1 bedroom 1 bathroom apartment to a 1048 sqft 2 bedroom 2 bathroom apartment, and our rent didn’t go up very much! Because of electric, we are going to have to rearrange the budget just a little, but we can totally do this! Its really odd having so much space, but its been a huge help. We only had to get one more piece of furniture, and it wasn’t even a necessity, more of a convince and comfort thing. We ended up getting a used couch from goodwill (I know… I know… but just keep reading). It was dirty… but in good condition, I had no idea how to clean it though… until I remembered a blog I saw a while back… this to be exact, by One Good thing by Jullee. This worked wonderfully! The couch doesn’t look brand new, but its no longer dirty, and I’m not scared to sit on it at all.

14 Ft Uhaul with a Tow Trailer

14 Ft Uhaul with a Tow Trailer

The move itself went fairly well also.  I stopped to see some CI friends in my stopover in Albuquerque for the night, with one friend being so very amazing and letting me spend the night at her place, so I didn’t have to pay for a hotel! The journey itself was long and a little lonely, normally when driving I choose not to have my CI’s on, because they distract, but this trip, I decided to give it a go, and boy, having the ability to listen to music while driving… that sure did help keep me awake. While still in Denver I had hired movers to help me load the uhaul, as my extraordinarily heavy bed would not allow me to move it myself. There were only a few casualties of the move, one being our trusty George Foreman grill (but this was 100% my fault…) my Loves parents found us a “new” smaller one at a thrift store though (which will be very much cleaned before use… are you seeing a pattern?)  We had an amazing assortment of friends and family to help us move in, with particular thanks to my Brother-In-Law(in-law?… my loves sisters husband), my father-in-law, and my 2nd Cousin! These three did most of the work on their own… thank goodness for these guys and their strong work ethic, their big muscles and their willingness to help.

We are mostly settled down in the new place, we still have a few rough edges to smooth out, but mostly, we are in a good spot. The day we moved in, I found out we also have a neighbor who is Deaf too!!! Haven’t met them yet, but can’t wait to! I’ve also found a Deaf Community here! They meet much more often than I had expected, I am use to a 1x a month gathering, but this is 1x a week!! I’ve been to the last two (They are on Fridays and we moved in On May 25th) but think I’m going to skip this weeks to hang out with my love.  We have been kayaking (once with my ears on… but that’s another post) and hanging out with my loves family, as well as some much needed time with just the two of us. I was away from my love for 3 weeks prior to my move for many reasons.

2. Ears… the journey continues.

All-Ears

So my ears… I have good days and bad days. Some days are much better than others. I have found a new audiologist, although I haven’t seen her yet, so judgment is yet to be passed. My next MAPping is July 29th, although I may have to move it up sooner… as things are sounding a bit off… I don’t know if it has to do with my IIH, the altitude change, condition change of here vs Colorado or if it has to do with my brain just not wanting to use my CI’s… I think I will need to call and check to see if we can move the appt up some. My new audiology clinic, should I decide to keep it is Arizona Hearing and Balance with the Audiologist I am going to be seeing Ashleigh E. Marley, AuD., CCC-A, who if I am reading their page correctly… knows ASL as well as Deaf Culture. So this will hopefully be a plus and a check mark in the good category.

Speaking of my ears, currently I am using my backup processors, why? Because I can’t determine if I am hearing better with the backups or if I am hearing the same. I noticed the change with my main processors so part of me is scared to use them. In a new place, with a new coworker, and 100% new clients… I need to be able to understand as much as possible… I think I may try the black (main processors) again tomorrow… but keep the handy dandy white ones with me… just in case.

Cochlear also replaced my batteries, because they weren’t really functioning to my liking… with one of the white ones lasting only a couple hours after a full charge, and the black ones deciding that blinking on the charger would be fun… but Cochlear, to their magical powers of awesomeness, they replaced them.

3. Eyes, oh what changes you have made (a side line on IIH as well)

MRI in Idiopathic Intracranial Hypertension

So, on the eyes front, it’s getting better. It’s not perfect, but it is getting better. There is no more black (doing a happy dance), but it is still very fuzzy. I’m going to have to see an eye doctor about it again… but I want to wait until it stabilizes, every week or so I see (literally!) some improvement, so once I stop seeing improvement, I’ll go back to the eye doctor. I also left my amazing Neuro-Opthemologist Dr. Kelts behind in Denver, and my insurance doesn’t cover any of them here in Arizona… so I’m looking into finding a good Neurologist, as that may be the key to getting me feeling up to par again.

My vision for the most part is getting better, it’s a slow but steady journey, but at least it looks like on the eye front I’m at least going in the right direction. Now… My eyes are 100% connected to my IIH (Idiopathic Intercranial Hypertension)… and that… well it’s like a Katy Perry song. IIH means I make too much CSF (Cerebral Spinal Fluid), and my body freaks out and thinks I have a brain tumor… and I get all the lovely side effects to it such as migraines, blurred vision (see the connection with the eyes), nausea, appetite and mood changes. (I sometimes also wonder if my occasionally awful memory is a part of this too… my love would tell me not to blame that on my IIH too) While I was moving, my Meds got all messed up… and I’m trying to get them back on schedule… and it is mostly working… but still while on the meds, it’s still a Katy Perry song (This one…) When I have high pressure being up helps, but I’m exhausted… so it isn’t easy to be up. My back is also in a lot of pain with the high pressure too… so again, it doesn’t make being up easy. When I have low pressure (due to meds suddenly working too well, attempting to over compensate my meds, or a blow out) laying down helps… but I can’t just lay down all the time now can I? No… I have to work, I have to go up and down our stairs (oh… we are on the second floor now), I have to drive, I have to listen. Both high and low pressure also come with varying degrees of confusion, light or heavy headedness, and I am constantly light sensitive… which might not be the best idea when it comes to living in the Arizona Desert. I’ve also come to wonder if my IIH plays a role in my ability to comprehend… not hear per say, but the clearness of the words. I’ll have to ask someone if they find this as well, the IIH group on FB maybe (that is based out of the UK… but I’m still allowed) , or maybe its just a CI + IIH thing, in which case, my dear deaf with CI friend at A Picnic with Ants may be able to shed some light on that as well… we shall see.

Anyways… I need to do things, and this post is entirely too long to start with. I will be updating on Kayaking! With and without my CI’s on next.

A world of black and white or a world of color?

I saw a short film a while back, from Australia where a now adult explained living before and after she received a CI, she explained it as before she was living in a black and white world, and now she had colors… This is how I feel… but about ASL, not my CI.

Before I learned ASL and was a part of the Deaf community, it felt as if I were living in an old foreign film, where nothing was clear, where the world around me was muffled, where I was alone, without friends, without true understanding. I was able to grasp a word here and there, I was able to understand some simple things, but never with fluency, never with the ability to really grasp it.

When I learned ASL, became a part of my Deaf community, my world suddenly had color, had vibrancy, had understanding, free flowing comprehension, exchanges of ideas, flow. It became a masterpiece, it became reality, and what a beautiful reality it was. It was something I had always dreamed of, no more struggling to understand, no more lip-reading people who had accents, no more having to ask professors and teachers to stop walking around the room and stand in one place, to pick a place, any place and keep that place for the semester, to not talk while writing on the board, and god forbid… have a teacher with a mustache… or BAD teeth… no, I would sit comfortably, without having to struggle, and watch my interpreters. I could have free flowing conversations with my professors, without having to ask them to repeat time and time again. I could ask them questions without wondering if I was pronouncing a word correctly, of if they would even understand what I was saying. I was free to soak in the message, without having to worry that if I looked away for just a second to make a note of something to remember or look up later I would be lost. I was finally in a place I was free to be me. I was finally surrounded by the world, the community, the freedom, the ability I had been searching for.

My CI didn’t give me that eye opening experience that learning ASL did, my CI didn’t allow me to freely understand no matter the circumstance, my CI didn’t give me the ability to understand the first time, and not just smile and nod. My CI gave me other things. If the world before ASL was an old black and white foreign film, the life after ASL was a modern day High Def Open Captioned movie. Life after my CI… when only using my CI, is like watching TV with Rabbit ears.

Some days, some circumstances, it’s good. The picture is mostly clear, the captions come a little late, but it isn’t that crisp picture of HD. Other days, you struggle to get reception, wondering how you will watch the show when the only time you can get a decent picture is if you are holding the ears, but the moment you let go… the quality goes away. I can understand if it is quiet, if there isn’t noise in the background, if I am expecting speech. I can understand best if I know the voice, if it’s not in a whisper, but also not yelling, crying, too slow, too fast, too old, too young, too foreign, too high, too low or anything else “funny”. Add any of those circumstances, and you are back to trying to adjust those rabbit ears, trying to get the right signal, trying to get clarity.

I live in a colorful world, one where ASL provides me color, provides me access, provides me clarity, and sometimes I have to adjust my ears, my rabbit ears so the hearing world can come in a little more clear… and yet other times, I ignore the hearing world and live in my world of color!! The one place I will NEVER go back to is that old foreign film, of black and white, of pain and fear.

Answers… maybe? Hopefully…

So yesterday I went to the neuro-opthamologist, a specialist who is a medical doctor and specializes in the optic nerve and is sort of a cross between a normal opthamologist and a neurologist. By golly… this was a long appointment…

It started out by them doing tests… taking pictures and measurements of my optic nerve. They had a decent time doing it with my right eye… I was suppose to follow around a blue light so they could get different measurements of my eye. The only times they had trouble is when that blue dot would disappear… because it went behind one of my black floaters. Then they did the left eye, apparently I was trying to focus too much, because they had a very hard time getting the measurements from that eye.

Vision Field Test

Vision Field Test

After that I had a vision field test. which is where you put your head into the contraption to the left, have one eye covered by an eye patch and press a button every time you see a light flash. This tests for blind spots. Blind spots are normal… just not very large ones or very many… my left eye Vision Field Test looked mostly normal (I will post pictures of the results once I get them in paper), I had one slightly larger than normal blind spot. Now the right looked almost like a patient with glaucoma. I had a huge blind spot… that covered almost half of my eye…

I think this is what it is... it bounces up and down on your eye

I think this is what it is… it bounces up and down on your eye

The Vision Field Test then prompted me to have a pressure test… you know that one where they blow a burst of air into your eye? I hate that one… and after 20 minutes and MANY failed attempts… (thank you eyes for automatically closing when the air comes out)… the decided that my eyes were not cooperating… so they needed to do it in a different way. At this point… they put numbing eye drops in my eyes… and put this.. thing on  my eye. It bounced up and down… measuring the pressure. This also took forever… because you have to be still… and my eyes aren’t really fans of having ANYTHING touch them.

After that test I did a light refraction test. Which is very easy… you just sit there and look at a house as it goes in and out of focus. After that… I waited to see the actual doctor.

The first time I saw him (I saw him 2x yesterday), he ran tests on my neurological condition… seeing if things were brighter on one side, if I had the same amount of strength on both sides, asking me questions which I saw no point to… such as “Do you have any issues speaking” I looked at him like he was CRAZY… and signed Deaf… which confused the interpreter (more on her later…). He at that point told me he wanted to start me on a 3 day course of IV steroids… then 10 days of prednisone that tapers down to almost nothing because he believed I had what is called optic neuritis. This term basically means that one of my optic nerves is swollen. It can be caused by many things, including high blood pressure (mine was perfect thank you very much… even with my head feeling like it was going to explode), spinal meningitus, or… even MS. He also wanted blood work done, to rule out things like thyroid issues. He then decided he wanted to run one more test…

two electrodes in the front... one in the back

two electrodes in the front… one in the back

This last test is called a Visual Evoked Potential test. Basically you have two electrodes placed at the front of your head, and one in the back. It measures how long it takes the visual stimulation to go into your head, as well as how much you are getting.

After this test, he said he wanted to see me again… he had made some changes as to what he believes is happening. He came in and explained the abnormalities to me. His first thought, the optic neuritis, I didn’t quite fit after he reviewed everything… the information from my previous doctor and the new tests. He said that with optic neuritis, normally it is only one optic nerve that is swollen… both of mine are. He also said it was odd that my left eye isn’t having as many issues as my right… although the headache is normally centered right behind the left eye, and slightly to the middle. After reviewing all of the information, he decided to change the diagnosis… from something that doesn’t sound too scary, but has some very nasty causes to it… to something that sounds… scary. He changed the diagnosis to pseudotumor ceribri (PTC), also known as Idiopathic intracranial hypertension (IIH) or benign intracranial hypertension (BIH).

this is what will go in my back...

this is what will go in my back…

Basically this means… I do not have a brain tumor… but all of my symptoms are pointing to a brain tumor. This is caused by increased spinal fluid around my brain, putting pressure on my brain and giving me the symptoms of a brain tumor… without the actual tumor. This is good he said… because we can treat it. It also isn’t linked with MS!! But… what this does mean is I will be having a spinal tap or a lumbar puncture. This will do a few things.

#1. It will measure the pressure of my spinal fluid

#2. It will relieve some of the pressure. hopefully making the awful headaches go away and will either cause my vision to become stable or improve.

#3. It will allow them to test the Cerebral Spinal Fluid (CSF).

Now the question is when? When will this happen? I’m not sure. I have to wait for them to call me, to tell me when they have available. I’m not looking forward to the spinal tap… I think only crazy people would… but I am looking forward to having some relief.

Now… about the interpreter…

I can’t say how thankful I was to have my implants yesterday… I couldn’t nearly understand everything the doctor or nurses were saying… but I am 100% certain she misinterpreted what I said… to the point I went voice on. I have no clue how this lady can STILL be a Certified interpreter… let alone a medically certified interpreter.

#1. This lady took forever to even start interpreting… and when she did… it was all too literal interpreting. and way more fingerspelling than is strictly necessary… telling me she didn’t understand the meanings of the words…

#2. when the doctor asked me if I was allergic to any medication, i finger spelled doxycycline, she looked at me like I was crazy… then said TETRACYCLINE… d vs t… they don’t look the same… there was not a single t in the word I spelled… so… I corrected her by speaking…

#3. I don’t discriminate against age… I don’t discriminate against abilities or what some would call disabilities… but this lady… she honestly needs to retire from being an interpreter… she was seriously… 80 or 85. She admitted to me she also has vision problems, and she also has hearing loss and couldn’t quite 100% of the time understand the doctor… THEN STOP BEING AN INTERPRETER… WHERE PEOPLE RELY ON YOUR ABILITY TO UNDERSTAND AND INTERPRET… This could have been a life or death situation… and what if I hadn’t understood that she said the wrong antibiotic that I am allergic to… and what if he gave me doxycycline instead… I appreciate she was probably a really good interpreter in the past… but she isn’t now… she needs to retire… and the company who hired her (A&A Languages) needs to not send her out on any more jobs… this could have been BAD…

Thankfully I don’t think she will be taking any more jobs for this doctor… because I could see her mentally freaking out, and attempting to (and failing at) spelling the words coming out of his mouth.

She also told me that the condition has 3 names, and broke it up as such. 1. Pseudo 2.Tumor 3.Ceribria (as she had spelled it)… no… wrong wrong wrong. the doctor said he would write them down for me… and those three names were… 1. pseudotumor ceribri 2. Idiopathic intracranial hypertension 3. benign intracranial hypertension.

I have decided… if I see her again… I am going to run in the other direction…

Then where do I fit?

I am on a number of different groups… some Deaf groups, some deaf groups. Some CI groups, some ASL groups… I surround myself with different types of people, and to me I think that is a wonderful thing, seeing different opinions, and different thoughts, nothing then is allowed to be dogma, but I am allowed to see facts for facts.

 

Recently… I’ve been thinking about leaving one of the groups, why? Because it seems their main goal is to end ALL cochlear implant surgeries, they are telling lies about how getting a CI isn’t a choice for anyone, that it is a death sentence, that Deaf people who choose to get a CI will be ostracized from the Deaf Community, that you will no longer be Deaf, or that getting a CI is promoting Audism… none of this I agree with.

 

Let me get a few facts out there (that are already in this blog site, but still) 1. I am Deaf, 2. I use ASL as my main Language, 3. I have a CI 4. I HAVE NOT been ostracized from the Deaf Community, nor has anyone I know who has chosen to get a CI been.

Now… there are a few things I do agree with in the most recent post that has gotten me upset… 1. CI’s should not be done on infants, 2. all deaf children should have sign language (ASL if in the USA, or the countries sign language), 3. Being Deaf should be accepted as a natural state, 4. CI’s are not a “fix”, 5. Before getting a CI, you should talk with MANY people who have CI’s (this was from a comment, not the original post)

 

Responses.

  1. if a child wants a CI, let them choose a CI when they are old enough to understand what it means to get one.
  2. Sign language is the natural language of deaf children, and should be taught first. Speech is not the important thing, language is. If you have a solid base for language, then you will be able to learn other languages easier (including the spoken forms of language).
  3. Deaf is natural, there is nothing wrong with being deaf, it doesn’t matter if it is a deaf human, if it is a deaf cat, or if it is a deaf Dalmatian (more on that to come).  It is a natural state of being, we have multiple senses for a reason, so we are not relying on only one.
  4. A CI will not “fix” hearing. For one thing, there is nothing wrong with being Deaf… see #3… a CI may or may not improve the simulation of hearing, give a sense of hearing. A CI should not be seen as a fix for a deaf person, because we are not broken. It will not give a person normal hearing, even if a sound booth test shows near normal results with a CI, because the world is not a sound booth.
  5. Before anyone chooses to get a CI, they should talk with many people who have had them, be told the good, the bad, as well as the ugly. In some cases, it doesn’t work, in some cases it works beautifully. But before you decide, talk to as many people as possible, with all different brands (no brand is honestly better than any other), with all different stories. Don’t count out the person who was a teen when she was implanted and suffered severe vertigo from it, or the person who was born deaf and can’t understand anything but environmental noise, or the girl who was implanted as a child, but can’t have it turned up to where she gets speech sounds because of facial stim, or the adult who chose a CI after progressive loss, and is doing great. Don’t count a story out, because you NEED to know the truth, things happen, its not always successful, bad things can happen, but so can good things. CI’s, just like life in general, is never black and white….

 

So, after reading these things, it gets me wondering, if, because I have chosen, not only once, but twice, to receive a CI, and if the following is true: “if it does work, you are likely to be ostracized by Deafs (you have expressed that being Deaf is bad, and want to distance from it)” , where does that leave me? Am I back in that middle ground between Deaf and Hearing where I use to be before I found my Deaf Community? Do I fit anywhere? I know the answers to these questions… because no matter what I am still Deaf, I still use ASL, and my Deaf Community has not turned their backs on me, and I know they never will, they are my family, just as much as blood makes a family.

Now I’m on another group, and I see so often pictures of children, babies even, having CI surgeries, and their parents or grandparents talking about how they are now hearing (LIE… GREAT BIG LIE) and how they don’t need ASL, or how they won’t respond to their child if they use ASL… or how they only use ASL at bath times (a sign here or there)… and that… it breaks my heart for so many reasons.

These children will never be hearing, they are deaf, and nothing will change that. ASL is still needed, because it doesn’t require batteries, it will never break, it is always accessible (even to a deaf blind child), noise doesn’t interfere with it… it is the only 100% accessible language to a child. I’m in no way pro infant or child implantation, I believe it is a very personal decision that must be made individually, and a child, especially a baby, has NO way of telling you if it is too loud, if they are feeling funny things (stimulation that can be very uncomfortable, even to the point of pain)… I think the person should make the decision, and it MUST be an informed decision. Before I got my first CI I talked with MANY adults who have CI’s, I read blogs, I have friends who’s CI’s failed, who are candidates, but choose not to get one, who regretted getting their CI, those who wanted explants (removing the CI), and those who were pleased with it. I did my homework, I actually watched a CI surgery (I must find that link), and I think that is something that is VERY important, I knew exactly what was going to be happening when I was under the knife, I knew what to expect (mostly) when I woke up from anesthesia, and I knew there was a very real possibility that it wouldn’t work, and that I would never be able to understand speech. Honestly, if you look back, my audiologist told me I was underestimating myself, by saying I wasn’t expecting to understand speech, I just wanted to be able to hear (not necessarily understand) music again, and know if someone was talking… my CI has exceeded my expectations yes.

ASL also, it isn’t something that is only needed for bath times, in fact, if you use it only at bath time… I think there are issues there… it gives mixed signals to the child, especially if the child’s first language is ASL… they may have a hard time telling when its appropriate and when it isn’t (I have a lengthy explanation of that here)

So… I also wonder… do I fit in this group? I can share my CI joy, and I love that… but do I fit in with the people who feel their deafness is something to be ashamed of, or that if you can’t hear something you are missing out? I don’t know… I am not, and will not be ashamed of being Deaf, and I know you can have a full life without hearing a thing… I’m starting to wonder… where do I fit… there are only a few places I know for sure. In my loves arms, in the Deaf community, and with my family (most of it anyways), and this… this I am ok with. I don’t have to fit with the Radical Deafies, nor with the Oral deafies, and certainty not with the audist deafs… but their stories I also shouldn’t count out…  but I shouldn’t take anything at face value either…

Discrimination and the Law

My friend Yuni got in an accident yesterday, it was in no way her fault, she stopped at a crosswalk to let a pedestrian pass, and she got rear-ended. Now, this could have gone a few ways, the other driver could have gotten very upset at her for no reason, or as what happened, he could be very apologetic. He understood what happened was his fault, he made sure she was ok before they moved their cars out of the road. When he learned she was Deaf, and used ASL, he was more than happy to write for her. Then it was time to call the police, to have a record of what happened, and the Accident investigator was there to determine fault, and insure there was no injury… that is their job… what happened… not the Accident investigators job.

I will let Yuni tell you about it (and don’t worry, if you don’t understand ASL, I will sum it up underneath in my comments).

 

 

so… what happened?

The guy was very nice, understood he was at fault, wrote as soon as he realized she needed him to, called the police, exchanged insurance information. They worked out a communication style that worked for both of them, it wasn’t her lip reading and speaking, it wasn’t him trying to decipher a language he didn’t know… they used a common language, they wrote in English, and it was easy (albeit nerve racking) for both of them.

 

The Accident Investigator showed up… and the whole situation changed. The investigator wasn’t interested in finding out what happened once she learned Yuni is Deaf, she asked her questions like, do you lip-read, do you speak, wanting Yuni to conform to the investigators preferred method of communication style instead of finding one that fits both of them. Then when the investigator actually starts writing down, she is only discussing hearing aids. Asking why Yuni doesn’t wear them, how can she hear the sirens (and I’m sure other things such as, car horns, etc). This is a police officer, one who is suppose to know the law, suppose to know there is NO requirement where we live to wear hearing aids or a CI to drive. After trying to explain quite a few times, 1. She is an adult and can make the choice to use HA’s or not, 2. Hearing Aids have NOTHING to do with the current investigation, the fact that a HEARING man rear-ended her. The Accident investigator told her she MUST wear a hearing aid, and kept writing about something that had no interest in the investigation… Only after explaining that Yuni had had her license for 2 years and this is the first time she has gotten in an accident, and it is NOT her fault, and she has never so much as gotten a TICKET…  does the cop relent, say the man who hit her is getting a ticket and it wasn’t her fault. Then why did the cop spend so much time explaining how she had to use a hearing aid… which can cost up to $6,000 a piece, including ear mold and fitting.

 

So then, Yuni explains what happens when her mom shows up on the scene, and this gets her thinking. Is this purely an audist attitude, or is there some deeper racial profiling going on?

Her mom speaks English, but for her to understand better, it is much better for the speaker to speak slow, which was explained to the accident investigator. Yuni’s mom came to make sure she was ok, to see what happened, and to know why it happened. Did the cop follow the directions she was given? To speak slowly so Yuni’s mom could easier comprehend? NO, she spoke very quickly… then when this was brought up to her again… she started treating Yuni’s mom like a child as well… This is why Yuni began to think… maybe this wasn’t purely an audist thing, although there was blatant audist beliefs being portrayed by a person who is suppose to protect all of our rights… maybe this had more to do with race than previously though. You see, Yuni is Mexican, her mom is Mexican the man who hit her was white, the cop was white… and yet the only people who were treated as someone to be pittied, as someone who was less intelligent… they were Mexican. Is it a language barrier at this point, or could it be something more sinister?

 

I have had experience with audism as well, and from the people who are suppose to protect my rights, my life… the police officers who patrol our streets, answer emergency calls, it hasn’t just been one time… but a few. Let me explain.

 

On my birthday… my car was broken into

My first, recent encounter was almost a year ago, I woke up on my birthday, ready to drive an hour to see my father for lunch, which is something we hadn’t done in MANY years due to a falling out, but I was excited, it was my birthday, why shouldn’t I be excited. I walked out my front door, went to my car, unlocked it, opened the door, and noticed that… something was wrong. I hadn’t remembered there being a hammer on my drivers seat, and I hadn’t remembered leaving my window open that night… but all over my dash, all over my seats, there was this substance, of what my brain initially saw as snow… but it ended up being glass. Once my brain recovered from this shock, I went inside and dialed 911 with my Video Relay. Explained the situation, and informed the operator that I was deaf, so I would need to have the officer write for me or have someone who signed… and I was immediately asked how, if I was deaf, was I able too call 911. When the officer showed up, she wouldn’t write for me, so the burden of communication was left on me. I spoke, I lipread, I was the only one making an effort. She didn’t like having to repeat herself, and she became very frustrated when I couldn’t understand what she said. She didn’t take any fingerprints, and acted as though she didn’t feel my situation was very important. She reluctantly took the hammer that was left on my seat, and said she would try to get finger prints off it, though I never heard back from them. I was left, on my birthday, feeling as though I wasn’t important enough to do a through investigation, as though I was taking away her valuable time with my “situation” with the break in that occurred to my car, with the items that were stolen, with me being distraught… I wasn’t worth her time, and the effort that I was having to put into communicating with HER was just slowing down her day.

My next adventure with the police was a few months later, and after finding out the situation and the reasons for being pulled over, I do agree that I was in fault, but that doesn’t excuse how I was treated.

Let me preface this with saying, normally, I do not speed, I have been called a grandma by friends because I go the speed limit, unfortunately I slipped up, didn’t see the change in speed (from 55 to 35, nothing in between), and got stopped right after the change happened.

I was driving back to work after working on a clients computer at their home, when I saw lights in my rear view mirror, I pulled over, thinking the motorcycle cop would go around me, instead, he pulled up behind me. I had been at work, so my hearing aids were on, to alert me to sound, but I needed to lipread to understand what was being said. I pull out my drivers license, my card that says I’m deaf, and my registration, ready to hand them to the police officer. He walks to my window, with his microphone on his helmet in front of his face, his words were incomprehensible to me… the only sound I heard was “akdfjaldkghlkdghasl”. I hand him my information, with the card stating I am deaf, and need him to write or use ASL with me on top, or at bare minimum, be sure I can see his lips. He looks at the card, and throws it on the ground, continues to speak, at which point I understand he will not do anything to help me… I must, once again, take the burden of communication onto myself… I speak, inform him again that I am Deaf and if I have any hope of understanding the words coming out of his mouth I need to see it, or better yet, I need him to write for me. NONE of this happens, he continues to speak with the microphone covering his mouth, and when he goes back to his motorcycle to put in my drivers license number to be sure that I am not a wanted criminal, he steps on my card that simply states, “I am Deaf and have special communication needs” (they can be found here, and hoh/non signing version here and I am not letting one cop stop me from using them).

front side

The rest of the conversation goes like this… he speaks, I don’t understand, I ask him to write, he shakes his head… it goes on and on around like a merry go round… with me not understanding anything, and the both of us obviously being frustrated. I finally am able to leave with a ticket in my hand… and my since of self, once again crushed by those who were suppose to protect me.

But the unfortunate thing is, the story doesn’t end there. When I go to pay the ticket, I have a conversation with his supervisor… which was no better. They tried to tell me that a Deaf person wasn’t allowed to drive, that we must use Hearing Aids or Cochlear

back side

Implants if we want to drive, because we have to be able to understand spoken English… that it was not required for the cop to write for me, and that it wasn’t important for me to be able to UNDERSTAND why I was being pulled over… in summary, it felt like he was telling me I had no rights because I couldn’t hear.

My situations were different from my friend Yunis, but unfortunately, they both had similar themes… if you can’t understand me speaking to you… you aren’t worth my time, let me tell you how to live your life, so you can be as similar to me as possible… you aren’t worth it.  Yuni’s also had hits of racial issues. What could we have done differently to make the situations go more smoothly? Should Yuni, who’s situation happened yesterday, take any recourse? Should our police officers, who are supposed to be there to protect us from bodily harm, to protect our rights, to be guardians of the people… shouldn’t they understand the laws better? Should they have to have training, what should they do… or does the burden of communication always have to lay on us alone?