A Deaf In The Family – 1.0

Slyfoot said he was half deaf, half blind, and half crazy.  He said I drove him sane…  

I didn’t think anything he said about himself was true.  I was a realistic, but when it came to people, one on one, individually, I was an optimistic.

 People say all sorts of weird things about themselves on the internet to make thems sound interesting. I’m not sure all those particular ‘half’s’ are all that interesting, but I thought it was just an attention grabber.  

I didn’t know Slyfoot, or Sam as I came to know him later, irl (in real life).  I just thought he was some gamer/hacker/computer geek who was way too into Linux and rosaries.  I never put it all together until we started talking in earnest–and that didn’t happen until after the dream and we were making plans to get married.  By that time it was too late.  God had already let me set my own trap and watched quietly as I walked right into it.  

I couldn’t blame Him. I had given him permission.  I’d invited him to in a flippant moment.  Truth be told, I had practically dared him to.  I didn’t think he’d take me seriously, and I never imagined it would end up the way it did.

It all started two years after my divorce.  I was in my mid thirties.  I had four children, but only the two youngest lived with me: Erin, my daughter, and Josh, my youngest son.  My two older boys, Benjamin and Bryce, lived with their father in the same area we had all lived together before the divorce: Katy, Texas.  

At that time, I lived in the northwest of Houston in a decent, inexpensive (relatively speaking), townhome apartment, struggling as a single mother still having a difficult time with my ex, even two years after we split.  

My father told me to start dating.  At this time, my father had been divorced three times and married four times–twice to my mother.  I told him I would work on that, with no intention of doing so.  I gave the appearance of respect.  I didn’t tell him that he was the last person I’d take advice on romance from, or that I couldn’t understand why he and my mother decided to get back together with him. But being my dad, I did listen and I thought about what he said, but not much more than that.

In The Church of Jesus Christ of Latter Day Saints (The Mormons) we have Wards instead of a Parish.  And instead of a parish priest, we have a Bishop.  You can’t switch wards or bishops, as some people outside the Mormon church do, with some special exceptions.  

None of the clergy in the Mormon church is paid.

Temples are not like Ward buildings, where Mormons meet every week to partake of the sacrament, attend Sunday School and auxiliary meetings.  They are sacred places where ordinances are performed that tie us to our families for eternity and give a glimpse of heaven.  Only worthy members, those with a recommend, are allowed in the temple.  To obtain this recommend, members have to adhere to the Word of Wisdom–a guideline to a healthy, God directed/centered lifestyle–pay their tithing–1/10th of their increase, be interviewed and found worthy by your bishop and your stake president, who is a little like a Bishop of the several parishes in his district.

Sometime after my father had told me to start dating, I went in to my bishop for a temple recommend interview and he,Bishop Slack, told me that I needed to start dating.  I laughed nervously and told him that my father had said the same thing just a few weeks earlier.  

I made no commitments and didn’t do anything more about that admonition than I had my fathers.

When I went into the interview with the stake president, I didn’t expect much small talk.  Stake Presidents have even less time to themselves, and more appointments to get to, than bishops. It was a bit of a surprise then, after the stake president started with the question on how my life had been–the trials of single motherhood, how hard that is in a ward full of functional, intact families–that he told me that I needed to start dating.

I laughed and decided that I better take the advice before one of the Twelve Apostles called me.  I didn’t want to take a chance on getting all the way up the chain to the prophet.

I started to take the idea of dating seriously, and tried to be open.

While I was trying to put together in my mind what I wanted from a potential husband (something I never really did when I was young) I kept writing and stayed in contact with most of my family and friends through email, livejournal (the precursor to “blogs”) or instant messaging.

Writing consumed most of my free time at this period in my life. It was a good diversion from feeling sorry for myself, my situation, being angry at the ex, and trying to adjust to being a single mom.  I was delving into scifi, something I hadn’t really done before, and my first serious foray was a short story called: A Rock and a Hard Place. I posted on my livejournal and it went like this:

Richard “Rock” Klein

Captain’s Log 14.10.2665

Outside Uranus (isn’t that ironic)

Kerry Portsmith Station

Docking Bay 24

 

They say space is cold. But it’s not *just* cold. No one has ever really felt how cold it is and lived to tell about it. We know instinctively that anything so vast and so empty must be cold.

 

The irony is that all the things we spend time with while in space also make us feel cold and empty. We travel in cold metalic ships from cold empty space to cold empty space.

 

Machines have no disability like perception. Filled with Artificial Intelligence and hundreds of processors heating up their hard drives, they are still only metal and plastic. They don’t care if they sit in space or in a shipyard for twenty years. They do not desire warmth and companionship. They just exist.

 

If you have one of those new bioships it might feel a little more like a horse than a cold lifeless THING, but in the end, it’s still a machine. It gives out as much personality and intelligence as an animal and it only lives to fill it’s purpose. It knows exactly what it should be and do. There is no goal for a spaceship to one day be a station. It is what it is and will never be more.

 

We try to fill the spaces with ego or warm it with personality. Those of us who spend so much time in space hardly know what exaggerated bravado is. We believe the lies we tell ourselves. We believe all the fantasies we create about ourselves and the things… and people, we love – or maybe it’s just ‘want.’

 

I’ve given up trying to tell the difference between love and desire. I just want warmth.

 

We leave a planet’s atmosphere to be greeted by a sheet of black with pinpricks of light. There is so much empty blackness between each point of light, that space seems cold even without feeling the temperature drop. We spend much of our time trying to make it feel warm and filled.

 

The ship is cold and empty this morning, but it won’t be tonight. Tonight she comes.

 

Samantha.

 

Three years ago she warmed these halls. It was three years ago, but I remember it like it was yesterday. No one has ever turned me on, out and completely neutroned me like Sam did. We were good. No. That’s a lie. We were slammin’ fantastic. I know how good it can be between a man and a woman.

 

That’s why I hate her.

 

You might look at the logs from six years ago and come to the same conclusion I did: She could be a cold hearted bitch.

 

Still… a cold hearted bitch is better company than an empty starship.

 

It was just a little story told using the method of narrating from a captain’s journal, but there was a reply from someone who had never replied to my journal before and the comments after the story went like this:

Slyfoot: Hey, I’m a Sci-Fi fan!

You’ve really got me interested in what happens next!

I really am interested, it’s not just ‘coz it’s the polite thing to say.

Me: I believe you. You don’t normally drop me ‘polite’ comments just to tag my LJ, so I appreciate the attention. (and I’m serious about this story, so it’s good to have someone to help me gauge if it’s still interesting).

Slyfoot: Yeah, keep at it! Maybe you’ll be the next Orson Scott Card. 🙂

PS: I have a Star Trek tattoo, too, lol.

Me: Don’t worry, I won’t tell anyone.

Houston, We have Liftoff!

Sam got his new CI all put together, programmed and processed!

1604772_10153677363630072_1867140_n

I wanted to make sure he didn’t think this was going to solve all communication problems, so I told him very seriously:  “We’re always gonna have communication problems because… you’re a man.”

It never hurts to be honest about important things like this 😉

Sticks and Stones May Break my Bones

I always thought the phrase “words can never hurt me,” was one of the stupidest ever uttered.  You WILL be hurt by words (fat, lazy, blonde, skinny).  You WILL be offended.  The actions of others WILL adversely affect you.  How you chose to act, however, is your own choice.  There is a universal truth that says: You can’t move forward if you are blaming someone else.  This doesn’t mean that they aren’t at fault – it just means that your personal progression is on your own shoulders, not theirs.  Their success does not diminish your chances of success (generally).   Taking offense may be natural, but letting it roll off your back can become just as natural.

If you are hard of hearing, it’s like being a half breed.  You aren’t ‘deaf’ enough to be Deaf and you aren’t hearing enough to be Hearing.  There are lots of miscommunications on both sides: One the Deaf side because you are “hearing in your head,” and on the hearing side because you don’t hear them clearly.  It’s easy to take offense, but it should also be easy to understand that there are cultural perceptions on each side that easily lead to ‘offense.’  Being in between should also help you understand that it’s not helpful to be offended.

Some people are trying to offend you, it’s true.  Nowhere is this more evident than on the internet where anonymity cloaks them.  But to stay offended doesn’t really hurt them and only harms you.  I think we have a century of clear examples that blame and taking offense does not move you forward in the macro – it can only be magnified in the micro.

So let it roll off your back and move further up and further in.

Euthenasia for the deaf-blind

About the case of the deaf blind twins that had themselves put to death because they didn’t want to live with being both deaf and blind.  They were deaf and going blind at the time they decided that life just isn’t good enough if you can’t hear and see (and you thought AUDISM was bad? What do you call it when the deaf think it’s so horrible not to be able to SEE that you should just DIE?):

http://www.newser.com/story/160965/deaf-twins-going-blind-die-by-assisted-suicide.html

I wanted to tell you why this was an evil thing these brothers did.

My husband has Ushers Syndrome and has been deaf since he was six and living with a deteriorating vision for most of his life.  He still tells tales about ‘blind camp.’  That was when he could still actually see.  Now, we have a blog that chronicles our life together, the adventures of the deaf-blind and we try to focus on the positive: https://withclosedcaptions.wordpress.com.

There is no cure for Ushers Syndrome.  Sam is rapidly losing the little vision he has.  He is having a lot of problems accepting the fact–despite everything we tell him–that he still has value.  There is not a job he can do that is more valuable to us than working at home raising the kids, but he does other things for me, like help me edit my work and research, besides being my emotional recharge, my spiritual rock and my best friend.  Society doesn’t value a stay at home dad very much, and obviously, from the above story, it doesn’t even really value a deaf-blind person.

This double suicide didn’t just affect these two brothers.  No.  This affected my husband.  If the deaf people didn’t think they had a value if they went blind, how can anyone expect society to think they do?

Katherine Sebilius’ said “Some people live, some people die” as if there were no value to a life that didn’t fit in a box on a chart in some census file.  This is exactly the mindset that these deaf brothers understood.

Every time my husband goes through a bout of depression, we struggle to show him how much he means to us.  You know who we have to fight?  That influence from the government, the media, and now these two deafblind brothers who think being deaf and blind is too much to bear.  They even use the excuse that they don’t want to be a burden to their family.  What did their family say?  They waved goodbye and had a ‘rich conversation?’  Are you freaking kidding me??!!

F*** you for not fighting this tooth and nail so I and all of my friends who are deaf and might one day go blind didn’t have to fight it. Screw you for going down silently to that last sleep.  I hope those deafblind brothers spend as much time in hell as we spend struggling to keep my husband uplifted and positive. (even though I don’t really believe in “hell”)

You think these sorts of decisions don’t affect other people?  You think they only impact the disabled, or the chronically ill? Think again. It may cost me the best man I’ve ever known.  Friends and family say these two brothers were good men.  Take a look around you. Do you really think society can afford to lose a lot more good men?

As for me and my house…  We will fight tooth and nail to continue to support and uplift the sanctity of each life, no matter the disability.

The Valley Of The Sham – Guest Poem by My Hobbit

The Valley Of The Sham

I saw The Great and Secret Show
Lost in the Valley of the Damned
Got past the shame and saw the Sham
I loved the Demons, I loved the Whores
The Light of God shone through the Doors
Caught in a rabbit Trap I never made
My Soul transmuted beneath the shade
The Fire burns, it burns so well
I never knew your Heaven was my Hell.
+S

Three Cheers for the Kindle Fire HD!

The Kindle Fire Experiment

Last Saturday I was bemoaning the fact that I can’t really listen to radio. I mean, I can listen to it, but I can’t really follow the conversation. My word comprehension with lip reading is perhaps 60% with the CI but it drops to around 40% without lipreading. So when you can only hear 4 out of 10 words, listening to the radio is like an aggravating game of Wheel of Fortune.

Noelle suggested that I try plugging in my CI to her Kindle Fire HD. I sighed mentally (and perhaps audibly) because I had already tried connecting a double-sided headphone jack from the CI to my computer, and the sound quality had been terrible. I assumed it would be more of the same. But, on the other hand, I thought it wouldn’t hurt to try connecting the CI to the Kindle, and I reasoned that I might be pleasantly surprised.

Well, I was pleasantly surprised. VERY pleasantly surprised.

First, Noelle had me read and listen to an ebook/audiobook combination via something called WhisperSync. This program syncs the exact text to the exact words on an audiobook read by a human. In other words it wasn’t text-to-speech software, but text-to-audiobook sync. She was able to magnify the text on the Kindle Fire HD so that I was reading four lines per page at the “wide” angle (landscape mode), in reverse video (white text on a back background). The cursor jumped from word to word in sync with the accompanying audiobook.

It was fantastic. I then decided to close my eyes to see if I could understand the audio without cheating, and to my surprise I could understand it very clearly. I’d estimate I understood maybe 75-80% of the text just from the audio alone. I hadn’t experienced anything this good with my CI since I had it turned on in 2003.

I had tried connecting my CI to other devices, but apparently none of them were very good audio quality. The Kindle Fire HD, on the other hand, worked extremely well.

I even tried listening to an ambient music station on Pandora. At some point after I got the CI in 2002 I decided that I liked ambient and synthesizer music (Vangelis, Brian Eno, Kitaro, Tangerine Dream, Peter Gabriel, etc.)

That’s probably because the CI already has a certain degree of synthesized sound, so ambient and synthesizer more naturally (or unnaturally) fits with the synthesized sound of the CI. I often joke that I listen to Borg music (a la ST:NG).

I could tell that I needed to get my mappings upgraded to be able to appreciate the music, but I am certain that once I do get a new mapping that the music clarity will improve substantially. It is quite good as it is.

So Saturday’s experiment was a fantastic success. And now I actually want a Kindle Fire. Everybody else in our house loves it, but I didn’t particularly care about it because I didn’t think it would be all that accessible. But it turned out to be a big accessibility WIN.

So it turns out that I can listen to radio after all, if you count Pandora (and I do). And in case you were wondering, the ebook/audiobook I experimented with via WhisperSync is called “Tolkien’s Ordinary Virtues” by Mark Eddy Smith. As you might have guessed, Tolkien has a rather large influence in the Realm of Calinor.

+Sam (aka The Hobbit)

An Hour In The Life Of A Deaf Blind Man (guest post by the Hobbit)

An Hour In The Life Of A Deafblind Man

I wanted to do something sweet for my wife and stepkids, so I decided that I would get my wife a dozen yellow roses, and a couple of packs of candy valentine hearts for the kids.

I walk to the store, and on the way I realize that I don’t have a notepad and a magic marker with me, but I hope that it won’t be a problem.

I went to the bank near the store to withdraw money from the ATM. Unfortunately it is midday, and the sun is shining too brightly on the outdoor ATM for me to be able to use it.

So I go into the grocery store to see if they have an ATM. I ask one of the cashiers where the ATM machine is. He points me in the direction of the bathrooms, so I go over there only to discover there is no ATM. I go back to the cashier and pull out my ATM card and slide it back and forth. He points in a different direction, and I find the ATMs.

I can’t read the fonts on the grocery store ATM very well, so I sort of stab at the buttons until I can see ‘checking’ and enter the amount I want ($20). The machine shows another screen, probably asking me if I want to pay the transfer fee (which I wouldn’t have had to pay if I could see the bank’s ATM machine). I figure it’s 50/50 so I push one. The machine doesn’t give me a $20 and flashes a message that I can’t see.

I sigh with exasperation.

I go to look for the flowers anyway, figuring that I can use the ATMs at the cash register, which is kind of a pain because I can never read the LCD readouts that ask me if I want to use credit/debit do-you-want-cash-back, please-enter-your-pin, and the order isn’t always the same from store to store and I haven’t tried it here yet.

I find a dozen yellow roses and ask the cashier how much they are. She scans it, but I am unable to see what the price showing on the monitor is, so I ask her to tell me. She tells me, but I can’t hear her, so I tell her that I am both visually and hearing impaired, so can she write it down? She does, but it’s in pen, so I still can’t see it. At this point I feel like a terrible nuisance.

I am not completely sure exactly what my balance in my checking is, so I go *back* to the bank, only this time instead of using the bank’s ATM (because the sunlight is still glaring on it too much to see) I go inside the bank and wait in line. Once I get a bank teller, I ask her if she will tell me what my balance is, and I tell her that since I can’t hear, would she please write it down for me.

She writes it down in pen, but it is too small, so I apologetically ask her to write it larger so I can see. She writes it out, and I see that I actually did have enough in my checking account to be able to use the bank’s ATM as well as the grocery store’s ATM. I get enough money to buy flowers, and I head back to the store.

After I get the flowers, I remembered that I wanted to get the candy hearts for the kids. So I ask the cashier which aisle the candy hearts are on. She calls to someone else, who tells her, then she tells me, but I can’t hear her. So I ask her if she will show me with her fingers what aisle they are on, and she holds up a 1 on one hand, and a 3 on the other hand. I figure it’s aisle 13 (rather than 31) so I say “13, right?” She nods, and I thank her.

I go to look for the candy hearts, squinting hard at the aisle numbers, and after a few minutes of squinting at candy boxes, I find them. I can’t see the price for the candy hearts. Since I only have approximately $2 left, I grab two boxes hoping that I have enough money to cover it.

I go to another register to buy the candy hearts, but I wanted to be sure I had enough so I ask the lady if $2 will cover it. She says something, but doesn’t nod or shake her head, so I am unsure. She seems to be asking me for change, so I fish in my pocket for change and show her what I have, and ask her again “is that enough?” she hands me back a dollar and rings it up. Apparently I had given her too much, not too little, but I just couldn’t hear what she was saying.

Finally, I leave the store, flowers and candy in hand, and I decide I should probably call my wife to let her know why it is taking me so long. I can’t see the numbers on the phone very well, but I’ve dialed the number enough to be pretty sure that I am dialing the correct number. I wait until the screen changes so I can begin to talk, but I can’t hear whether my wife is on the phone or not. I speak into the phone telling her “I don’t know if you are getting this or not, but if you are I am on my way home now.”

Then I walk home, and give the flowers to my wife. I am grateful that I managed to bumble my way through it, and I can literally feel all of the tension from the pent-up deafblindie frustrations melt away as she hugs me.

— by Sam

Spanglish

When I married my half-deaf/half-blind/half-crazy husband I knew exactly one word and one phrase in ASL. The word? Sorry. The phrase? I love you. We started to go to a deaf branch of the LDS church the week after we were married. It was the people in the branch that taught me ASL, the interpreters and the members. Because most of the members were Hispanic, and I am half Hispanic, more comfortable with Spanish than I was with ASL, I hung around the Hispanic deaf members because I felt a little more comfortable in their culture than Deaf Culture. The words they verbalized were often in Spanish, the food was Mexican and even if it was quiet, it was familiar. But from those friends I picked up a lot of words in MSL not knowing they were MSL.

Now that I am more comfortable with my skills in sign language, I sometimes find that I’ve learned a word in MSL that translates as a completely different word in ASL. Strawberry in MSL, for instance, looks a lot like Flower in ASL and it is easy to confuse my ASL only friends with the sign.

The strangest side effect of this, however, has nothing to do with the deaf. Because I am (1/2) Hispanic, I have friends that speak very little English and I find myself signing at them when I am trying to stammer out my broken, ill-used, Spanish. Maybe it’s because ASL and Spanish are in the same part of my brain, I don’t know, but it must look awfully strange to my hearing friends and relatives to see me waving my hands in the air while I am speaking to them.

It’s kinda funny because my hearing friends do the opposite to me, knowing I speak ASL at home. They try NOT to wave their hands about, because they’ve seen me zero in on their hands once they start moving, like I’m trying to figure out what signs they are signing.

Being multilingual in a multilingual world would be a fascinating study in anthropology or linguistics, don’t you think?

Deafness is not a disability… or is it?

This is a hard, controversial post, but it appears in my life constantly. Please be patient and understanding while reading it.

I was looking for videos in ASL when I found this:

This is a hot topic in any “Deaf” community. This is also partly why I and my husband aren’t considered IN the Deaf Community. He has a CI and I am hearing. I can never be IN the community, not truly. They even have a diagram to show all of us how we aren’t really IN it. People in Deaf culture are in the very center. The rest of us… well… you can see how you really aren’t unless you are both deaf and accept the culture.

Disability in this context is defined by the American Heritage Dictionary is:

A disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area.

So is deafness a deficiency that prevents “normal” achievement in a particular area.

But it is clear that it is unacceptable to call deafness a disability, unless you are at the social security office, or at a school, doctors office, counselors, or other office asking for an interpreter. Then you are covered by the Americans with Disabilities Act. From what I can see, you are disabled when you need to be but otherwise aren’t when you don’t need anything to interact with the rest of the culture (real world) at large. You don’t really need Closed Captions to enjoy a show, do you? You can watch it without subtitles. And you certainly don’t need police to be trained in how to deal with a deaf person if they aren’t disabled.

If you have a CI–A cochlear implant–you can not be IN Deaf Culture because you are not audiologically in deaf culture. Even people who consider themselves deaf and aren’t FULLY deaf can’t be in the “inner circle” of Deaf Culture, let alone if you are Hard of Hearing. As shown by the diagram above.

I have never really understood this and for the life of me, I can’t understand why CI’s bother Deaf people (with a capital D) so much.

If you had a child born missing a retina and there was surgery to reattach it or to replace it with a digital device, would you not do it? If your child were missing legs, would you refuse to let them use a wheelchair? Parents with deaf children consider it a disability, like these others mentioned before, and they are vilified in the Deaf Community for it.

And if their children are put in a deaf school, those children receive reinforcement for all their negative feelings (because, we have to admit that being deaf in a hearing family is often a lonely, distant, alienating sort of existence) toward their parents. Those reinforcements distance a deaf child from their hearing family members.

These parents have a daunting task and the Deaf Community makes it harder and almost guarantees the parents failure at some point no matter what choice they make.

Why? All because of a concept called “Deaf Culture” and the education that presents deafness as a NON disability.

As far as culture goes, scientifically, Deaf Culture does not really fit in it: http://www.deafculture.com/. But I’ve been in a “Deaf Education” class. It is clear that it is being taught as an actual Culture (anthropologically speaking), ignoring the spaces that it is missing to actually be one.

All of it doesn’t really matter. The truth is the truth. Either Deafness is a disability or not. Either Deaf Culture is a culture or it is not. My opinion means nothing in this area to anyone really influential, but it is my own. And now I am interested in yours. Try not to be too hard on me in your comments below.

Better Than A Reality Show

Whenever my dad comes to visit and see’s all the things we deal with on a normal, everyday basis, he will remark how our household would make a great reality show. It would be much better than Jersey Shore, I’m sure, and probably a lot more culturally edifying–at least Deaf Culturally edifying. You could probably learn a lot about how to handle broken glass and the many uses outside of Christmas for string lights. You would probably learn a lot more ASL than either my children, my brothers or my nephews. You might not need to use it as badly, but you’d be welcomed to visit.