Random Acts of Blindness #4

I saw some of my foundation in the toilet the other day, and I thought WTH?  I didn’t really think more about it, until I saw it had been squirted on the wall too.  Two pumps.  When my husband asked me where the air freshener was (I had thrown the others out because they were empty), it all started to come together.  He got the first thing on “my” side of the bathroom that had a pump & thought my foundation was perfume!  He had sprayed it in the bathroom to freshen it up.

I have since put a bottle of orange blossom air freshener (homemade)  and some almond oil air freshener in the bathroom so my foundation, and anything else on my side of the sink with a pump, is safe.

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)

QOTD – June 1st 2013

(As the box boy holds out the bag of eggs to my husband)

ME:

No-no.  We do not hand the eggs to the blind man.  I’ll take that.

What’s it like to be deaf?

Many of us can relate to this! Thanks to Boomer for turning me onto this blog.

First, you know how some people carry an emergency…contraceptive (my grandmother reads this) in their wallet?  Well, MY friend carries an emergency York Peppermint Patty.  Priorities, people, priorities.

That really has nothing to do with my post for today.  What I really want to talk about is the whole, “being deaf/hard-of-hearing” deal. Here’s today’s public service announcement: CONTRARY to popular belief, I do not have selective hearing, I’m NOT making it up, and NOT ALL DEAF PEOPLE have a “funny accent.”

Sure, my friends can still do it like animals (must.bleach.brain.) in their room with paper thin walls while I crash on their couch and no one is embarrassed in the morning.  Sure, if I tell the airline personnel handling boarding I’m deaf, I get to board with the babies and elderly.  Jealous, are you? Don’t be.  There’s a whole other side to this, people.  I bet you’ve never thought…

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