All arayed in spotless white…

Feel incredibly depressed today, but I also feel like I don’t have a right to be depressed.

A good friend passed away this week.  I knew there was trouble because I hadn’t heard from his wife in a while (with a personal contact).  His wife was essentially my mentor in ASL.  She is a professional interpreter who corrected me, taught me and helped me through my trials in the Deaf Community and with the problems of having a deaf spouse brings into a family.  I generally know enough now that I have been on my own in most cases regarding ASL, but when it came to family problems, she and her husband, who just passed, were always there to help us through them.

Before this friend passed away, he had been through a coma/stroke that affected his brain.  He almost died.  It was remarkable that he pulled through it.  The Deaf Branch prayed and fasted for him, and he recovered.  He was remarkably recovered, but there were still obvious new quirks that reminded us that he had not got back everything he had lost.  His wife spent a lot of time with him, helping in his recovery, the therapy, and just enduring the times when he wasn’t quite himself.  This is where we became more similar as a couple than we had before.  She had frustrations when her husband wasn’t quite himself like I did, and frustrations when her husband thought he could do things that he used to do before when she would have to remind him that it just wasn’t possible now, like I do sometimes too.  In this way we commiserated and supported each other.

Then her husband got cancer.  It must have been quite a blow to have recovered from one near death experience only to face another.

Her husband was one of My Hobbit’s dearest friends.  They traded hats like some kids trade CCG’s.

I asked My Hobbit how he was doing, because I could tell he was feeling low after the Memorial for this dear friend, and he  said: “I am doing ok.  I didn’t cry.”  And I said: “I cried for you.”  And I think I did.

I am very sober this evening.  I am glad that the challenges we have at our house have given us an opportunity to be so close and spend so much time together, even if it presents other challenges (like financial challenges) that are difficult to navigate. I am glad to have My Hobbit, for as long as I have him, and now I am even glad for the challenges that have brought us so low financially.  I get to be with him, my eternal companion, much more often than I would be if I worked.  I think, after the Memorial today, that I appreciate that much more than I ever have before.

Houston, We have Liftoff!

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

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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 😉

Ghosts of Christmas past. (Guest Post by My Hobbit)

I will always remember this year’s Christmas. Thanks to the generosity of friends, family, and strangers, we had a better Christmas than I had any reason to expect. We were able to raise enough money through donations for the 20% co-pay coverage for a Nucleus 6 cochlear implant. It arrived on Christmas Eve. It came by FedEx, though I like to pretend it was delivered by sleigh and reindeer.

What’s more, I was able to get another pair of good quality sunglasses thanks to friends in our ward who got us gift cards for Christmas. They are Veza sunglasses, which are only sold at Sam’s Club. I really like the Veza sunglasses because they are incredibly strong and sturdy. Whenever I can scrounge up the money I look forward to adding another pair to my collection. I have three pairs now, and if I don’t lose any of them they should last a lifetime. They’re not a well-known brand, but that just makes them even more special. I feel like I know a secret that most people don’t know.

I don’t want much in the way of luxuries. I like sturdy boots, sturdy sunglasses, and a computer with a fast internet connection. I care more about whether something is durable than whether it is fashionable.

Anyway, what with a new CI processor and new sunglasses, it was a very deafblindie sort of Christmas. I’ve already set up an appointment with a specialist to have the CI assembled and mapped for the first time.

I look forward to switching from the big processor to a BTE (behind-the-ear) unit. It will be a lot more convenient. And fortunately I also have a backup CI that still works, even though it is obsolete. I am practically OCD about having backups: backup CIs, backup sunglasses, backup computers, backup boots, etc.

Anyway, it was a great Christmas. And thanks to everyone who contributed to the purchase of a new CI!

Happy Holidays,
+Sam

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.

Urban Gardening

Part of what I do in the deaf community is teach container gardening.  It’s been a passion of mine for a while, and my deaf friends have really enjoyed the pleasures of growing their own vegetables, even if it’s just one small tomato plant.   Lots of them love the idea of growing something they can eat.

I will be starting the Master Gardener Program for Harris County next week, and I set up a blog in tandem with that and the Program goals of teaching and encouraging Urban Gardens.  This is really mostly for Houston, but if you have a container garden, especially if you are deaf, and would like to share it, please feel free to post here: http://urbangardeninginhouston.blogspot.com/

As always, thank you for the wonderful support.  My husband has also been especially encouraging and that is a blessing too.

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

Community (guest post by the hobbit)

Community > Culture

I hadn’t really taken a firm position on this debate before, but I have now. Noelle and I both endorse the following commentary that I’ve quoted below.

From now on I intend to emphasize the concept of community rather than culture when it comes to hearing impairment. And I will dispense with the lowercase/uppercase conventions of “deaf” and “Deaf.” Because I’d rather be unconventional. And because I can.

Editors’ comments:

While I am familiar with the concept of “Deaf culture,” I prefer to use the term “Deaf community” to describe us. I don’t believe that the term “culture” is appropriate, since it’s too strong a term, too restrictive, and too politically-slanted. Since deaf people come from a wide variety of backgrounds, communicatively, educationally, and socially, I prefer a term that reflects this diversity.

I don’t feel comfortable defining us as having a “culture,” since deaf people in the United States are already members of American culture. Certainly, it’s possible to hold membership in more than one culture, so to speak, but if you consider carefully, you’ll see that deaf people don’t really have a distinct, full-fledged culture. We don’t have a “Deaf God,” for example, although there are a number of ASL-affirmative churches. But these churches are simply outposts of existing denominations, such as Lutheran, Methodist, Roman Catholic, or Reform Judaism. There is no distiinct “Deaf religion,” no “Deaf Bible,” no “Deaf food,” no “Deaf dress.” Deaf people are not recognizable as “deaf” at first glance.

Yes, we have ASL as the linguistic basis of our ethnic identity, but aside from that, we don’t have a distinct culture like Sikhs or Italian-Americans do, so the term “subculture” might be more appropriate. Still, I like the term “Deaf community,” since it defines us without limiting us.

“Deaf culture,” as a self-conscious political concept, is limiting rather than inclusive. It encourages a certain elitism, a snobbery. For example, in Deaf culture, a person is considered “strong-Deaf,” and is accorded respect, if s/he has Deaf parents. Since I am the child of hearing parents, and the only deaf person in my family, I’m not considered “strong-Deaf” enough by certain Deaf-culture purists. (Not strong-Deaf enough to be taken seriously, I imagine.) My status in Deaf culture is, in this view, lower than that of persons with Deaf parents and/or Deaf siblings. I’ve had a few encounters with gung-ho Deaf-culture types who have told me that they don’t consider me part of Deaf culture because I’m from a hearing family and didn’t attend Gallaudet University. Despite the fact that ASL is my first language, that I entered Indiana School for the Deaf when I was 3, began my ASL education immediately, was immersed in this environment until I graduated as valeductorian of my class, and that I participated actively in the ASL-using community of NTID/RIT—none of that cuts much ice with the Deaf-culture purists. I suppose that they consider me second-class, according to the strict Deaf Culture criteria. Or maybe third-class. Since the vast majority of deaf people have hearing parents, that would mean that only a mere handful of Deaf people can rightly be considered the “elite.” Not by one’s personal accomplishments, not by one’s contributions to the community, but simply by having the “right kind” of parents. To my view, this is as snobbish and restrictive as the views promulgated by the oralists, who excluded deaf people from the respect accorded to all other groups, communities, and societies. In defying the norms of Hearing culture, Deaf culture has set up a view that is, in its own way, just as exclusionary.

The term “community” indicates a group of people, or a segment of the population, that has shared goals, beliefs, experiences, or simply lives in proximity. Although most deaf people are geographically scattered, they do comprise a distinct community with ASL and the schools for the deaf as their socio-linguistic heart. Thus, “Deaf community” includes people from mainstreamed backgrounds, alumni of oral schools, persons with cochlear implants, and those whose first language in English—all of these disqualifying factors to membership in Deaf culture. The Deaf community also includes hearing families, friends, supporters, and advocates of Deaf people—even if they’re not native-ASL signers.

My political views are based on my own experiences, observations, and interactions with other Deaf /deaf people—and I’ve met a large number of them. When I’m asked about my feelings about Deaf culture, or if I see myself as being part of Deaf culture, I propose that we use the term “Deaf community.” Deaf culture excludes; Deaf community includes. I prefer an inclusive approach here.

Source: http://www.deafculture.com/commentary/

If you’re a friend of the deaf or deafblind community, you’re welcome to drop by and be friendly.

Namaste, +Sam