Prologue from Raging Bull

For those of you that helped me with this novella, there’s a sneak peak up at my artists/authors blog:

via Prologue from Raging Bull.

Feel free to repost and reblog!!!

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.

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

Miracles – guest Post by my Hobbit

In ASL, the sign for miracle is “wonderful happening.” The ASL sign manages to be much less problematic than the English word.

So Jesus rose from the dead? That’s a wonderful happening. Jesus walked on the water? That’s a wonderful happening too. You just got a job? Wonderful happening. Your wife had a baby? Wonderful happening! Your cat had kittens? Well that’s wonderful too, but I’m not sure that’s actually a happening. You got a cochlear implant? Hmmm… well, that’s your choice.

Okay, I guess sometimes the concept is problematic even in ASL.

http://www.azlyrics.com/lyrics/icpinsaneclownposse/miracles.html

–by Sam Campbell, aka Noelle’s Hobbit 🙂

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.

Only For the Hearing Impaired

Time for something serious again.  My dad is a travelin’ man.  Sometimes he lives with me, sometimes my brother, other times alone, sometimes with my mother.  He gets shipped off to help this person or that person as often as the Marines.  He was a politician once, and he still doles out advice as if he were still in office.  Don’t get me wrong–He’s been right about a lot of things–I shouldn’t have married my ex husband among them, but he’s not right about everything.

Usually I will just agree he is wiser, take his advice, my own counsel and do the best I can to make a good decision with my husbands.  When I can’t decide, I take it to the only parent I defer to completely: Heavenly Father.  He has proven smarter than me on everything I have brought to him, even when it looked to me like he was sending me into disaster.  He was the one who outsmarted me and moved me like a chess piece until I was at checkmate when I said HE could pick my next husband.  He did.

It didn’t seem like a smart decision at all–a single mother raising two small children on a tight budget marrying an unemployed deaf-blind, slightly crazy, bachelor from Floriduh that she had never met in person before, only knew him from online conversations.  But God was smarter, and he put me in such a position that I had to accept what he offered.  It was really amazing how supportive my friends were, when it seemed very clear to me that marrying my now husband was perfectly illogical.  I didn’t even know ASL!

I defer to my Heavenly Father because his decision was so much better than I thought it was, or could be, or mine would have been.  It was, it seems, perfect for me, and I have deferred to him completely ever since insomuch that even the proclamations the church comes out with, I will not argue with at all, even if I feel a little uncomfortable with them.  God has proven he is smarter than me and though I ask all the time ‘Why is this so hard?’  I never doubt that if HE has sent me to this place, which I believe he has, there is a light at the end of the tunnel.  I believe that because there always has been.

Which brings me to my Dad’s advice.  He suggested I go to a ‘hearing’ ward. (Wards are congregations of the LDS Church).  He suggested that I might get more support than I do at the Deaf Branch. (Branches are smaller congregations of the LDS church, typically smaller than a ward).  He says this because he knows the trouble I have in my positions at church, being an interpreter of sorts for the deaf parents of hearing scouts and the leader of the primary age children.  He knows I have problems because I am hearing and some of the things I suggest or comment on to leadership aren’t taken seriously because I’m not deaf, I don’t really understand.  Sometimes the leadership suffers from the tyranny of compassion and can find themselves being more hypocrites than Hippocratic.

My father knows I have problems asking for help from the members because as poor as I am, most of them are even poorer.  The deaf don’t usually end up well off.  BUT, the deaf don’t see my family as dysfunctional.  They don’t feel pity for me or my husband Compassion, yes.  Pity? No. They see our family as relatively well off.  And almost all of them can communicate with my husband to a greater degree than hearing people can.  If I can’t show up for something, they are far more understanding and I don’t need a one page explanation.  If I am late, I’m actually on time.  If someone else hasn’t shown up, I can fill in.

With the Deaf I feel normal and I feel needed.  I don’t feel as if I am more of a burden than the people around me.  I feel I do more help than harm.  My family learns more, and indeed, I think they are loved more in the Deaf Community.

I have, in the past, had people I call ‘the Deaf Elite’ (professors and ‘professionals’ who serve the deaf — sometimes CODAs) tell me that I don’t belong in the community.  That I will never ‘fit in.’  I think they speak out of fear that they will lose their position as ‘elites’ if too many people they cannot control join the group.

Where I am, I believe, is where He wants me to be.  Even though I miss music, I miss things functioning as they should, and I miss very large social groups full of people who complain more about Facebook than they praise it, I feel I am in a place where I have more joy.  It is a place I receive more enlightenment–not education, though I miss that sometimes too.  It is a place where you need to have common sense and adaptability.  All of those make it ideal for a person like me.  I think God knew that I would be more inspired, enlightened, and have more joy in this place, because logic would have sent me to the Hearing World too.

I think I’ll stay here a little longer, besides–where would I get such good fodder for blogging than the world I am in now?

Pronunciation of your name is not really important in ASL – unless your name is Jesus

I have several very good friends that are deaf.  They are always there for me, they are an awesome support system.  They taught me most of what I know of ASL, and continue to correct and teach me what I need to know to be the half-ass interpreter I am.  The only problem we have is communicating when we aren’t face to face.

I don’t have VRS.  My husband is legally blind,  so VRS isn’t really going to help him.  But when I call my deaf friends, I usually get their Sorenson Service.  When I give my name: “Noelle – N.O.E.L.L.E.”  What I get from my friends on the other side of the VRS is “WHO?”  Sometimes I will tell the operator that my sign name is “writing” but with the “n sign.”  I hope they know what I’m talking about because trying to explain a sign, especially a name sign, verbally is like trying to verbally paint a Monet.  Most of the time, I end up telling them “It’s me, remember? You helped me set up for my party on Saint Patricks Day,” or some other uniquely personal event they were at me with (shopping for shoes last weekend, going to get ice cream at Baskin Robins, etc).  That’s when they say “OOOOOOOHHHHH!”  And hit me with the: “Oh!  I’m sorry!  Hugs!  Love you!” BTW, Deaf people “love you” a LOT–It’s probably the best, and most genuine things about the Deaf that makes them easy to be around.

Anyway… once we get over the awkwardness of them not knowing who “Noelle” –the woman they see every week, and just how many Noelle’s do they know?–is over, the conversation can progress.  The only problem is… they never remember my name: Noelle.  They only remember my namesign.  It makes sense, of course, like trying to remember that Chuy’s name is actually Jesus, which, if said without the Spanish pronunciation: “Jesus is calling you,” is probably pretty disorienting.  Right?

It’s understandable, though a little awkward, and just one of the many little quirks of being hearing in a Deaf Community.

The Deaf Nod – or – I don’t understand a thing you are saying, but I’m pretending I do

All hearing people who have worked with the deaf, and even other deaf people, have seen ‘the Deaf nod.’  In fact, everyone who has is nodding their head right now.  Hearing people do it to:  You are talking to mom, she is busy cooking dinner, but she nods her head and says “uh huh” every three seconds.  You know she isn’t really listening to you, but for some reason you keep talking to her.  But when hearing people do it, they are obviously distracted.  Deaf people smile, look you straight in the face while you are signing and nod while completely uncomprehending of anything you are saying.  It is an extraordinary talent, really–the sort of acting ability unparalleled in Hollywood. The only problem is… It definitely doesn’t work with a spouse.

My husbands hearing friends will tell me that they know he is piecing together bits of the conversation he can with lip reading, his CI and visual cues.  He calls it a Wheel of Fortune puzzle.  I understand the difficulties of communicating with people when you only understand bits and pieces of the conversation.  I do.  But if communication is the key to every relationship, nodding your head when you don’t know wtf your spouse is saying is probably not a good idea.  She could be telling you that she is really hot for you and could you come to bed – or she could be telling you not to throw away the stuff drying on the counter, it’s Marzipan not clay, or she could be telling you that you have no money in the account.  All things you might actually want to know, especially that first one.

This isn’t just a deaf/hearing thing, it happens between the deaf too. There are a lot of difficulties in ASL.  Everyone has their own ‘accent.’  Living in Texas, I know many Mexican Deaf who first learned MSL and then came here.  They have a bit of a Spanglish problem, with many MSL signs thrown into their ASL conversations.  And that’s not all, there are ‘local’ signs.  There are four different ways to sign “Sunday” and lots of local places have their own name signs.   Since my best Deaf friend taught me a lot of sign language, sometimes I get funny looks when using an MSL sign to my ASL only friends–or I get the Deaf nod.  It seems perfectly understandable this would happen, right?  But the deaf will do it to the deaf too when they don’t really understand them.

The hearing people interpret for will often tell me when trying to communicate something to the Deaf “will you make sure they REALLY understand?” because they know that sometimes the Deaf will say they understand (or do the Deaf nod) when they really don’t.  I don’t make any promises.  There’s nothing an interpreter can do to make sure they understand except ask: “Understand?”

Honestly, it’s just like anything else.  What might be REALLY important to you just isn’t as important to someone else–deaf or not and no amount of clarification, language enhancement and emphasis can make it become important to them when it isn’t.

Comprende?

Deaf Standard Time

I live in Houston, and in Houston we are on Central Standard Time or CST.  Just a few states over is Mountain Standard Time.  In my church, the Church of Jesus Christ of Latter-Day Saints, we understand that MST is not Mountain Standard Time, but Mormon Standard Time.  Translated into non-member, that means “fifteen minutes late.”   This is caused, so we are all led to believe, by Mormon mothers being especially overworked (due to having five kids in three years) and having a difficult time managing to keep all five children in their Sunday best–even with the tag team help of a spouse.

Being in a deaf branch (congregation) of the same church, and socializing with the deaf, we have learned that the deaf have a similar standard of time, Deaf Time, (which means late.  This is, necessarily compounded by MST and it means I am habitually early to nearly every Deaf Branch function, even if I am late.  The reason for being tardy, I suspect, is not due to the children–though CODAS can be especially hard to manage when they want to be.  I have yet to hear any explanation except “It’s a Deaf thing.”

Since I grew up in Southern California near the playground of the stars (Palm Springs), I am somewhat familiar with L.A. trends.  Apparently, it is uncool to be on time for a party.  The standard is to appear thirty +minutes late.  The deaf have taken ‘fashionably late’ as a literal standard and we have learned to schedule meetings, gatherings and parties accordingly.

If you can measure how cultured a people are by how late they arrive to a meeting, no one can out culture a Deaf Mormon.

A Deafblind Man of You Own – Act Now!

There are complications to being married to a deaf-blind man.  “But Noelle, what could possibly outweigh the benefits of being married to the unparalleled bliss of sexiness that is your average deaf-blind man?” You may ask.  Normally, the sheer joy of possessing my very own deaf-blind man makes me forget, or at the very least, put aside the fact that my whites clothes are washed with dark clothes.  I am flattered he thinks my daughters size zero clothes are mine, of course.  Most people would consider those mere trifles if they considered them a bother at all–which I most certainly do not!  I don’t want to make you envious of me.  I assure you that there are plenty of single deaf-blind men for each and every woman in desperate need of one.  I’m just trying to enlighten you on the very minimal, hardly worth mentioning really, complications involved with an inter aural marriage and the slight complication that vision impairment adds to it.

There are a few drawbacks.  First, you really can’t complain that your deafblind man is too touchy-feely.  Also, a deafblindman can be high maintenance.  Where a beautiful woman (or man) might require excessive salon services, and maybe a plastic surgeon, a deafblind man is in constant need of reading material.  Technology can help with this last drawback, and a larger than average libido can handle the first.

A clean floor and minimal breakables is also one of those high maintenance issues.  If you have a favorite porcelain doll, or vases, or anything even mildly ceramic in nature, it is in your best interests to invest in shelves installed higher than your deafblind man’s height.   Anything you leave on the floor is in jeopardy.  Clutter is an almost unbearable burden for any deafblind man (though mine tolerates my clutter if I just keep it on my desk 😛 )

Pets are not too much of an issue.  Cats and Dogs that do not run from your deafblind man will probably be trampled, kicked and occasionally sent into orbit, but it will only happen a few times before they learn to avoid him, though they always seem to forget when food is involved.  You will probably get trampled on, smacked, sideswiped with a cane or other object in your deafblind man’s hands, but I am sure it is not as bad as getting your tail squished by the deafblind man’s desk chair.

There are a few other minor niggles, but they are best managed one on one with your own deafblind man.  Just looking at him, in all his sexiness, might make you forget the little problems that can crop up, so I hope this blog article has been useful in helping remind you that, although his eyes are as blue as the sky, you may be seeing stars when he whips his cane out while you are around.

To procure your very own deafblind man, feel free to volunteer at any Lighthouse for the Blind (ours is in Houston, look for the one nearest you) or at American Association for the Deaf Blind.

Act now! Supplies are limited!  Operators (and Intervenors) are standing by!