Asorted Bits

Sunrise low tide

Jen Sorensen

Jen's ghost cats

Ivan Marchuk, contemporary Ukrainian painter.

Mike Luckovich

I NEED this T-shirt!

Wildfire map

The Life of Sharks

Digable

I was reviewing some old paperwork and discovered something surprising. You see, for awhile now I've thought that I lost the vast majority of my hearing when I was 46. Turns out, I was 49 when my audio took the last train to the coast.

What’s this mean? I had hearing for three more years than I thought. This makes me happy. I mean, 49 is almost half a century of music heaven. Awesome, n'est-ce pas?

I googled ‘music 2007’ to see what was happening right before the old sound system crapped out. It looks like I didn’t miss much that year (remember, art and music tastes are subjective—so this is just me and not an imperious judgment. REALLY!). There was a lot of rap, the always execrable country and a bunch of forgettable pop/rock.

I was never really into rap but I’m happy as hell to have been able to enjoy Digable Planets’ alt hip hop and jazz rap stylings after they reunited in 2005. I got to groove to The Beastie Boys but, sadly, totally missed their instrumental album, The Mix-Up.

What did I listen to most during my last few months of hearing? I knew the wrecking ball of deafness was coming at me so I had David Byrne’s mostly instrumental album, The Forest, Aaron Copeland’s Fanfare for the Common Man, Jeff Beck Group’s Truth all in solid, continual rotation on my little stereo. I wanted to burn them into my memory banks. There were so many others too—Paul Simon’s Rhythm of the Saints, Pearl Jam’s Ten, Nine Inch Nails’s The Downward Spiral, Jeff Buckley’s Grace to name just a few.

That’s it for today. After a nasty night’s semi-sleep, I’m feeling foggy and not fully up for another day of errands, physical therapy and whatnot. What I’m DEF gonna do is avoid the news, especially the rage-baity let's-manufacture-a-horserace shit. I've got Douglas Adams' Life, the Universe and Everything and John Scalzi's The Ghost Brigades to read.

Disability Pride

It's Disability Pride Month. What’s that?

In honor of the passage of the Americans with Disabilities Act (ADA) in July of 1990, Disability Pride Month is celebrated each July to highlight disabled ways of being, knowing, and thriving in the past, present, and future. Disability Pride Month serves as an opportunity for organizations to celebrate disability culture, draw attention to the expertise and lived experience of disabled individuals, raise awareness around ableism – intentional or unintentional discrimination or prejudice against disabled people - and engage non-disabled individuals in thoughtful and meaningful dialogue around disability and ableism. (source)

Also, disability pride is about promoting and fostering allyship, accepting and honoring each individual’s uniqueness—seeing us for the beautiful motherfuckers that we are.

I’m finally admitting it—I’m disabled.

Why has it taken me so long to acknowledge this pretty damn obvious fact? I mean, normally I’m reasonably self aware, (tending to fall into the too self-critical end of the pool though). I don’t normally shy away from staring uncomfortable and/or painful realities in the face (ignoring them, sadly, does NOT make them go away. For that matter, looking the other way is Problem Miracle Grow). Troubles and botheration are challenges and puzzles to be met, mitigated and, if possible, solved.

Partly, my reluctance to claim the disabled label is that, for the longest time I was simply hard of hearing and then deaf. People who are deaf are NOT automatically disabled—not by a long shot. Remember my Big D, Little d post from a thousand (okay, 11) years ago?

…just because a person is deaf (audiologically speaking), does not automatically make her Deaf (culturally speaking). A capital “D” is used to indicate that a person is part of the Deaf community and has grown up in that culture. It tells people that you’re fine with and happy to be audiologically deaf and you are also involved in the Deaf Community. (source)

I’m deaf, not Deaf. Not only did I not grow up in a Deaf community, I was raised with music being an integral part of my existence. Conversations (specifically with my father) were creative, free-form, organic compositions—like poetry slams but over the dinner table or during a long car ride to Whereverville. Daddy was a teacher—a college math prof. Teaching is/can be a form of performance art. Yes, this can be done in any language—in American Sign Language or spoken English, Tagalog, Sicilian, etc. In our house it was spoken word with hearing.

The point here—one of the ingredients in my disabled stew is that I’m deaf. Two of my ASL instructors were Deaf. They are not disabled.

Added into the disability pot, over the last six years, are all my nasty-ass surgeries and their aftereffects. I’ve lost a lot of my ability to balance. My ability to walk without tipping over like a haphazardly stacked tower of paperbacks has been wickedly compromised. I’m a vestibular shitshow. That and I have facial nerve damage (damn brain surgeries) which fuck with my vision and mouth functions.

So yeah, I’m disabled.

Face the facts of being what you are, for that is what changes what you are.
~ Søren Kierkegaard

I’d like to create more awareness about simple ways to communicate with me, a late deafened, not ASL fluent adult. Also, have a fall-risk friend like me? Do they need assistance navigating? How can you best help?

It’s mondo important to know, to thoroughly grok, that each disabled person has a unique set of challenges. You may/probably have never encountered someone with my laundry list of challenges before—I’m all individually peculiar and shit. Your lack of familiarity with the hurdles I face is totally understandable.

Two things:

Before fast reacting to the chance that I might stumble and fall, ASK me in what way you might be able to assist in preventing disaster. Nine times out of ten I’m gonna tell you not to crowd me. Do NOT hold onto me. That’s only going to throw me off. I’m having to work hard (and every second) against your touch (no matter how light you think you think your hand on my hip/waist is) in order to re-find my balance point and stay upright. Spot me like a gymnast—be nearby, have your hands out to catch me or break my fall. Unless I'm actively struggling though, HANDS OFF.


In communication—do NOT assume that I can read your lips. MAYBE I can catch a word here and there but, odds are (especially if I don’t speak with you every day IN PERSON) I won’t. Always remember that my ability to read your lips is NOT your ticket out of communication challenge hell. At best (IF you supplement with some ASL and writing shit down) I MAY get the drift of what you’re saying.

Instead, open up a text doc on your telefonino, turn on the mic and speak slowly and clearly into the damn tiny phone. Show me the text. Eight more handy dandy communicating with your deafie tips here.

Final thoughts on me and my disability stew—this month isn’t the Adversity Olympics. Disability Pride Month isn’t a poor, pitiful, pathetic me competition. It’s largely, to my mind, about spreading awareness. It's about not being invisible and ignored anymore.  

*** What do the colors and shapes on the Disability Pride flag mean?

• The Black Field: Mourning for those who’ve suffered and died from Ableist violence, and also rebellion.

• The Zigzag Band: How disabled people must move around and past barriers, and our creativity in doing so.

• The Five Colors: the variety of Disability, our needs and experiences (Mental Illness, Neurodiversity, Invisible and Undiagnosed Disabilities, Physical Disability, and Sensory Disabilities).

• The Parallel Stripes: Solidarity within the Disability Community, despite our differences.
  

Tune in, Freak out

One of my bigger fears—losing my mind. I mean, have I not lost enough? C’mon man!

Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer's disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. (source)

That last sentence puts my mind and heart somewhat at ease—that dementia is NOT standard operating procedure for aging.

In the first nationally representative study of cognitive impairment prevalence in more than 20 years, Columbia University researchers have found almost 10% of U.S. adults ages 65 and older have dementia, while another 22% have mild cognitive impairment.  (source)

In my current read, The Last Devil to Die by Richard Osman, the husband of one of the main characters is falling deeper and deeper into dementia. Osman paints Stephen’s decline so clearly and empathetically. It’s easy to understand and feel the fear, panic and chasm deep wrenching sadness.

Life is a crisis (a phrase from the book).

It is. There's nothing new and scary happening here—knock on wood. I’m not expecting anything fresh and horrorshow to go down anytime soon. Maybe I’m bummed in advance about this coming summer’s potential brain slice up? Perhaps I’m just feeling the weight of my collective, jam packed vida Loca.

Over the past few days I’ve felt as though I've been experiencing each and every loss, every significant wound as though they were brand-y damn new. It’s as though grief just jumped out of a dark alley, ran me down and stole all my exuberance and vigor. (FYI, grief's a sneaky-ass motherfucker)

Mind, I’m not in any way forgetting or failing to appreciate all my good fortune.

The fact that I had music in my life for 46 years. I completely enjoyed the fuck outta my audio system while I had it. Still…

I had 30 beautiful years with The Amazing Bob. I miss him—I always will.

Kevin Alexander Scott—now gone for longer than he was alive.  How in Winsor & Newton's oil soaked name did that happen?!

So, there have been monumental losses but isn’t that just how life rolls?

Buy the ticket, take the ride...and if it occasionally gets a little heavier than what you had in mind, well...maybe chalk it up to forced consciousness expansion: Tune in, freak out, get beaten.
~ Hunter S. Thompson, Fear and Loathing in Las Vegas

Words to live by.

And in the streets, the children screamed
The lovers cried and the poets dreamed
But not a word was spoken
The church bells all were broken
And the three men I admire most
The Father, Son, and the Holy Ghost
They caught the last train for the coast
The day the music died

And they were singin', "Bye-bye, Miss American Pie"
Drove my Chevy to The Levee, but The Levee was dry
And Them good old boys were drinkin' whiskey in Rye
Singin', "This'll be the day that I die
This'll be the day that I die"
Don McLean—American Pie

Apparently, the heavy metal band Disturbed covered Sounds of Silence and it, according to reliable sources, kills. I absolutely loved Paul Simon’s reggae inflected version. A heavy metal one? Goddamn I WANT to hear that. Always disliked the original version—the sappy, overwrought strings were just TOO damn much.

N'est-ce pas?

O Tannenbaum

Chagall Santa and horse beating Mary
and baby Jeebus with an Xmas tree.
Tradition and shit.

Picasso's Santa

This, if I haven’t mentioned it a zillion times already, is my least favorite holiday EVAH. It was the day my parents had their biggest, scariest, loudest arguments. It seemed to be a competition—who could land the lowest blows. It was also the day my mother put paid to her ridiculous claims of loving us all equally (by giving the most fun, thoughtful gifts to my brother and one of my sisters while I got socks, underwear and hideous sweaters). Daddy, on the other hand, always gave me an album—one I’d been yearning for (usually Simon and Garfunkel).

Ironically, now that I'm, theoretically, an old-ass adult, socks and underwear are perfect presents. Gifts of music? Cruel.

Okay, I take that back…sort of. The Kodo drummers of Japan will be performing at Symphony Hall in March. I’ve been waiting for them to come around since my hearing clocked out 18 years ago. If nothing else, I know I’ll be able to feel the beats. I last saw them in concert ~30 years ago and they were BRILLIANT. I’m PSYCHED! Yep, tickets for the show (for Jen, Oni, Ten and I) are my Xmas prezzie to me. YEA!

So, this is Christmas. We’ll celebrate the traditional way—breakfast with Jen and Oni and then, later, Chinese food and a movie. I totally understand that Alien: Resurrection is more of an Easter flick but there’s at least one alien birth so, in my less than humble opinion, this counts as appropriate for today.

Also, here’s some holiday themed art. You’re welcome.

Ed Wheeler's photoshopped version of  Henri Rousseau's The Dream

Wheeler's version of Nighthawks by Edward Hopper

Sound

I had the first of this week’s MRIs yesterday and it went swimmingly. Granted, I’d followed my usual med scheme (half a calm-me-down pill the night before, the morning of and half an hour in advance) PLUS a couple gummies (watermelon flavor, mmmmmm). Also this was an open MRI—instead of being loaded like a bullet into a tube, I laid on a platform. Yes, the machine’s roof is right over me but the sides are mostly free and clear. Made a world of difference.
Tomorrow is my next couple of MRI’s. They're for my spine and will last a total of two hours. I’ll get the results on Tuesday when I see Doc Plotkin. While I know I’ll need more surgeries, I’m really hoping I can safely take a break from the OR. Not counting on it but wouldn’t it be nice.

The clicks and bangs made by an MRI always reminded me of nōgaku music. I wish I could still hear it.

Of course, I'll never hear the music made by a black hole either.

Nasa’s recording of rumbling sound waves from the Perseus galaxy cluster, 200m light years away, sounds, on first hearing, like a lot of submerged wailing – or indeed whales – but like many a classic, takes time to reveal its true complexity and profundity. The 34-second recording is a mantra-like loop or cycle, suggesting the influence of the 1970s German Krautrock bands Neu! and Can, and their gospel of repetition in music. (source)

OR Ten’s voice. We met 15 years after my audio system went *BOOM*

I never caught Amy Winehouse before the big boom either. I keep seeing her lionized—was she really all that and a bag of chips? I’ll never know.

Then there's Cake—apparently he’s a talker. He greets us, demands his meals, announces when he needs us to entertain him and lets us know when he requires pats and skritches. I think he gets that I’m deaf. Instead of just talking to me, he indicates or pantomimes his needs. AND, if I’m sitting in bed or my big green velvet chair, he’ll start clawing at the upholstery like an industrial shredder. Yes, that totally gets my attention.

An aside: Cake normally sleeps by my side or at my feet. Since Ten and Jen moved Coco’s high castle into the downstairs front window, Cake is bunking there. I guess it’s more fun watching out for marauding raccoons, skunks, stray cats and Rancor beasts than watching an old broad snore. Hmmph.

I’ll never hear babies crying on airplanes either. Granted, I’ve got to actually fly again in order to feel all smug about not experiencing the wailing bambinos. On top of that, annoying chit chat from seat mates (who are not Jen or Ten, who are never annoying), is decidedly past tense.

Or dimbulbs telling me I don’t need to wear a mask anymore—HAH! Today the seven day average of new cases, here in Massachusetts, is 2,022. I’m keeping my mask on.

There are, in fact, upsides to this deaf deal. We live in a cacophonous, angry-ass, ill mannered world—I don't mind missing out on all the aural pollution.

Music, Music

There’s a guy (Eric Alper) on Twitter who posts music trivia, fun memes and musical questions. i.e.,

• What's a cover you love that's completely different from the original?
• What's a great song about storms, thunder, or rain?
• What song hits different at 2am?
  

I feel like a bit of a fraud when I chime in on these posts. Why? Because I haven’t been able to listen to music since Black Eyed Peas came out with Where is the Love and Beastie Boys gave us To the 5 Boroughs. Mind you, in 2004 I was listening more to NIN, Pearl Jam, Talking Heads, Paul Simon and Kronos Quartet. Still, I chime in on a lot of his questions.

What's a cover you love that's completely different from the original? OK, maybe these aren't completely different but I love them.

Eight Mile High—Hüsker Dü
Fer reals, ya gotta listen to it. I always loved The Byrds' version but Hüsker Dü’s? Oh BAYBEE, that one spoke to my soul.

Tom Jones and the Art of Noise—Kiss
Someone replied to try my post with Kiss by Age of Chance and I am SO bummed that I never heard this version.  

I just clicked the like/heart icon instead of commenting because WHAT am I gonna say?

 Wish I could listen to this (LOVE the visuals) but I lost my hearing 18 years ago. 

I mean, how fucking much does that statement scream PITY ME?! In my mind, I would be expressing appreciation but regret that I can’t fully enjoy what they’ve shared. How’s it come off though? Probably as some serious Too Much Information-ing and attention begging. No can do.

Having said that, I hate that I can’t hear! I hate that I can’t easily converse about music! I HATE that I can't listen to anything new OR old! An important part of my being has been sliced out and this blows, yes, giant bantha wang.

I also wanted to post Concussion Ensemble’s cover of the Mission Impossible theme song. Jesus that was mega brill. Sadly, I couldn’t find a video of it. That band was WAY too short-lived.

In any case, even when I’ve nothing exceptional to add to his question posts, I love scrolling through the replies. It seems that a lot of his followers are older (but not as old as me but then...who is?) so I can totally relate and enjoy their responses.

This tweet of Eric’s hit me hard.
Take some time to thank a musician today. Because your life would just suck without music.

If I could magically hear again, whose songs, arias, symphonies and ripping tunes would you recommend I listen to first?

There Are Benefits

I just realized what one of the benefits of being deaf is JUST like. Ya know how on Twitter you can mute someone? The muted person can still see your feed but you don’t see theirs OR any stupid comment they might make on one of your posts.

There’s something similar-ish on Shoutyface where you can unfollow an offending person’s feed. You can also snooze someone—take a break from seeing their posts for a few weeks or so.

*POOF* they're vanished without the muss and fuss of uncomfortable, possibly hostile convos. Why did you block me? Why did you unfriend me? Because you're a tiresome asshole is not usually a calmly received answer.

How is mute and unfollow like being deaf? Imagine this, a person comes up to me—wants to tell me their life story or preach at me/SAVE my soul or give me some kind of delusional, bullying right wing werewolf shit. I tell them I’m deaf. Instead of telling them how they can effectively communicate with me (write a note, text or, using the voice to text mic, talk into a notes doc on their phone), I simply state“I’m deaf,” smile and turn away.

FYI, cake is a cure-all.
You already knew that though.

Most folks, particularly the self involved, grandstanding twats, salesweasels, pontificating droners and angry ragers, generally aren’t able to figure out alternative communication methods on their own. No, it's me who must try harder to magically hear their very important blatherings.

So…see? Being deaf means that I’m no longer obliged to instruct Republi/Fascists to fuck the whole way off to the lowest level of Dante’s Inferno and never speak to me again (said in a diplomatic manner, of course). I no longer need to insist that the narcissist’s best option is to stop boring me and get outta my face STAT (again, said in a kindly yet definitive way). I won’t need to politely but mega firmly tell the god sellers to get off my porch NOW.

Nope. I get to smoothly, quickly, seamlessly even, get clear of unwanted, unnecessary, annoying social hassle. I just say “I’m deaf” and walk away.

This works unless of course the offending and/or bothersome party texts me asking why I’m such a heartless misanthrope. I can just ignore a text though…right?!

There are holes in my pretty scenario. Pre-pandemic, a pair of ASL savvy Jehovah’s Witnesses used to periodically stop by the house. At first I welcomed the signing convo practice. I was repeatedly, TOTALLY upfront about not being interested in their religion but enjoyed being able to chit-chat via sign with them (I didn't and still don't know many signers). 

Unfortunately and, in retrospect unsurprisingly, they interpreted this as me being an easy mark who’d like to “hear” about their brand of god. They just had to be sly about it. Ah no.

After their last visit, which was shortly after TAB left this beautiful blue earth, I figured I was shot of them. Since they’d always been nice (if blindly determined to trap another soul for their cult), I really hated to be rude. It truly pained me but, post TAB, patience was nonexistent.

My friend Michal had the absolutely best, most admirable response to door-to-door god pushers:

“…I don't have time for all that made up voodoo. I hope you have a nice day.”

Blunt, concise, honest. Admirable.

Funnily enough, via snail mail yesterday, I received a letter and packet of flyers from these same Watch Tower people. They do NOT give up. I suppose COVID has been good for something—it’s kept the obtuse salesweasels from my door.

Reunion

I just got an announcement email about my high school graduating class’s upcoming reunion. No, of course I’m not going.

Why not?

A) Hello, COVID anyone? Omicron may be waning BUT what new variants are waiting in the wings? Also, I went to high school in rural Western Pennsylvania—less than half of the county’s population is vaccinated. Do they mask? I'm not filled with confidence this would be a healthy, safe outting for me.

B) I’d need to fly and, with all the news about brutally stupid, trash-brained, egomaniacal ding-dongs in flight, that ain’t gonna happen. 

C) None of the ‘organized events’ are free—except, possibly, the tour of the high school. So, on top of transportation, hotel and meal costs, add in the price for all activities. KA-CHING!

Asides:

• I went to this school for three blindingly long years—I remember what the joint looks like and don’t need or want the free tour.

• The only other ‘organized event’ that looked vaguely interesting was a wine tasting. I’m on blood thinners now so wine's not a happening thing.

• The menu for the big, main dinner? 

Cole slaw (Cole slaw?! Why is this even listed, let alone at the top? It’s like announcing parsley as an appetizer)
Tossed garden salad (zzzzz)
Dinner rolls AND buttermilk biscuits with butter honey (butter honey? ‘the hell’s that?)
Roasted chicken with BBQ rub
Slow-roasted BBQ pork shoulder
Oven-roasted Yukon gold potatoes (because, with rolls AND biscuits, more starch is needed…of course)
Fresh vegetable medley (‘the fuck’s that? Peas and corn with a few carrot slices for extra color?)
Red velvet cake; coffee and iced tea

Obvs, whoever came up with this menu doesn’t know any pescatarians, vegetarians, vegans OR anyone whose palate extends beyond 1970s diner fare.
 While I do dearly love red velvet cake, I'm not traveling a third of the way across the country for it.

D) I'm deaf. I may have mentioned that once or twice before. I won't be able to use my Chrome tablet with Live Transcribe running—too much crosstalk in large groups. So unless folks tippy tap into their tiny phones or know ASL, I'm left out of socializing. Don't mind me, I'm purely ornamental.

E) I only know a few of the people from my graduating class. What this means is that, if I'm not chatting with those three, maybe four, people, all talk is of the politely dull getting-to-know-you variety. Just what I've always wanted—a blind date with 100 people at once.

With all that PLUS the fact that my high school experiences were fraught to say the very least, I just can't imagine going (I'm sure I won't be missed). 'SOK, by the time spring rolls around I'll need to be right here to keep an eye on the tides. Ya know, make sure they go out, come back in and shit.

Kvetches and Cats

A small-ish complaint for the first Monday of the new year—this wall area at the Mission Hill Mass Eye and Ear office. It’s the text, not the art, that I have a problem with.   

‘and the deaf shall hear…’ In my head I see Charlton Heston, all decked out in Moses gear, loudly pronouncing this from the side of a mountain. Thunder and lightening break out immediately afterward. 

Also, what's behind that ellipsis? Is the omitted part of the sentence your mileage may vary? Had they intended to use an asterisk with annotations (say, a list of which deafies wouldn't hear) below? Did they forget their biblical source (Isaiah 29:18) so the ellipsis is the text equivalent of the designer flipping his/her hand saying 'Oh, you know. It's that bible thingie.'  I'm imagining the pitch meeting now: 'Why just put pics on the wall? Let's use grandiose text! Now, I can't remember the context but wouldn't this sentence fragment look GREAT here?'

I get that the, doubtless well-intentioned, wall art is meant to provide hope and wonder to the pool of deaf folk who are actually able, and want, to benefit from med advances so they can hear. That’s great. Meanwhile, I walked by the wall and thought, what a profoundly melodramatic, misleading and insensitive pile of one dimensional PR theater.

OK, it's a cold wet dreary Monday after a lovely long weekend. I think we need burrito cat pics. Don't you?

Jury Duty and Me

I got a jury duty notification sometime last year – first one since the grand deafening. There was a website where I could ask questions and all that. I went there and keyed in that I very much wanted to serve BUT would need CART as I’m deaf and not fluent in ASL. I never got a reply and, more or less, forgot about it.

Here we are, a year later – I just got a postcard cancelling my “summons.”

“Since you were summoned, the needs of the court have changed. YOU ARE NO LONGER REQUIRED TO APPEAR FOR JUROR SERVICE. We apologize for any inconvenience this may cause you.”

Huh. No response to my question about whether they’re able to accommodate deaf jurors with CART. Does this generic postcard cancellation mean no, they can’t deal with CART needing deaf jurors or was my service ixnayed for some other reason.

I realize that it’d be expensive for the state to hire a ‘terp or a CART stenographer but, geez, I’m a citizen – isn’t it my right to take part in the justice system?

Of course I unleashed my google fu.

The answer, thanks to the Americans with Disabilities Act  (and specifically DeLong v. Brumbaugh) is YOU BETCHA! But it looks like I’d have to be ASL fluent versus needing CART.

Meanwhile in London:

"Matthew Johnston served on three trials during a two-week period at Blackfriars crown court, concluding last Thursday. He read subtitles from courtroom stenographers and relied on his lip-reading skills to participate in jury deliberations. Johnston has a small amount of hearing as a result of his cochlear implant, and is able to speak.

“It’s all about inclusivity, isn’t it,” Johnston said. “It’s a big thing for me … We don’t want to turn our backs to society, we want to be part of society. We want to feel included. I feel great that I can be one of a jury.”" (source)

Lipreading alone would NOT be sufficiently accurate or comprehensive in a trial situation (or a medical setting) – too many ULTRA important bits would be missed.

Check out this awesome essay in Stanford Magazine by Rachel Kolb:

Even the most skilled lipreaders in English, I have read, can discern an average of 30 percent of what is being said. I believe this figure to be true. There are people with whom I catch almost every word—people I know well, or who take care to speak at a reasonable rate, or whose faces are just easier on the eyes (for lack of a better phrase). But there are also people whom I cannot understand at all. On average, 30 percent is a reasonable number.

But 30 percent is also rather unreasonable. How does one have a meaningful conversation at 30 percent? It is like functioning at 30 percent of normal oxygen, or eating 30 percent of recommended calories—possible to subsist, but difficult to feel at your best and all but impossible to excel.  (source)

Take a gander at this fab vid, Can You Read My Lips

and see how you fare.

Here are some dandy, hopefully helpful hints for successfully chitchatting with your d/Deaf pals:

1. Don't just start talking – get my attention before commencing with the communication action.
2. Give me some context before launching in – what are you going to be jawing about (maybe write that bit down and show it to me before you start, eh?)
3. My eyes to your eyes – put your face on the same level as mine. i.e., don’t make me look up or down to see your lips move. But DO NOT get all up in my face either. I'm deaf, not blind – stand or sit a normal conversation distance away.
   
4. Don’t stand/sit with the sun or other light source behind you. If your face is backlit/ in shadow, I can’t see your lips clearly enough to read them.
5. Speak in a normal voice and tone. Don’t over enunciate – that distorts your word shapes. So does speaking loudly. Also, talking loudly to a deafie is just plain silly and WAY fucking pointless. I’m deaf – my auditory nerve is totally disconnected. Amplifying your utterances to 11 isn’t gonna make my banjaxed sound system magically function.
6. You may not know any ASL or how to finger spell BUT you can still use a few simple gestures to help illustrate what you're trying to say. Fer instance, point to/hold up any items that you're talking about. If something’s big or small, hold your hands far a part or close together, etc. Try to think visually and get creative.
7. If I just can’t read you or the convo includes loads of details, have your cell phone handy. Open a notes doc and either speak into the phone mic or tippy tap in your message.

Back at jury duty. I think that, next time I get a summons, I'll go into the District Court Office versus relying on the online messaging site and ask wut up, can I serve.

Is deafness a disability?

This question popped up on one of my social media feeds the other day. The answer, to my mind, is that it entirely depends on your circumstances, who and where you are.

Fer instance, an acquaintance of mine, (deaf since birth) is a teacher and soccer coach at a school for deaf children here in Massachusetts. His wife, deaf since birth, is also a teacher. They have a daughter, own their home, travel and have a wide and diverse social life. I very much doubt that my friend and his wife consider themselves disabled. They're not. They’re big D deaf – culturally deaf.

Me? I’m a late deafened (at age 46) human on top of all my other bullshit neurological issues. ASL was not my first language (and my signing remains pretty weak), my work/social life wasn’t/isn’t within the deaf community and, pre-deafening, music was a MEGA HUGE part of my life.

Sure, I could have/could still, make a greater effort to break into/make more friends in the local Deaf community and gain ASL fluency but life’s just not so easy, so cut and dry. I have a job (granted, the hours are fluid and I can work from home or wherever I can get a WiFi signal). I have paintings that aren’t gonna start or finish themselves, family and friends I don't see nearly often enough and a whole pile of other health issues on my plate. I’m not just sans audio – I have Nf2.

PLUS I’m one of those awful morning persons. A lot, if not all, of the Deaf Socials happen (happened – pre-Trump Plague) in the evening. I’m in bed reading with Coco by 8PM (no, not every night and yes, that’s obscenely early) AND I don’t drive at night anymore (my night vision blows). Between this and being perpetually on the recovery train, I’ve not made major efforts to immerse myself in Deaf Land.

When we lived in Cambridge, before my hearing took the last train for the coast, I‘d hit the live music clubs two or more nights a week. We’d throw big raucous house parties. Bunches of us would gather for din-din and adult bevs in Inman and Central Squares.

I’m no longer kicking up my heels, pogoing my ass off at the Middle East, dining out at the latest new, wild food joint and I no longer host big shindigs. Is this all because I’m deaf and have myriad other, banjaxing health bullshit going on? Or is it because I’m older (62, thenkyewveddymuch). Mebbe my social stylin' has changed/aged and I’m just not into partying like it’s 1999 anymore?

I believe it’s a little of both. I like my quiet life. Watching Picard (GREAT show!), whilst sipping vino and snacking on roasted Brussels sprouts with Jen and Oni. Taking walks along the seawall and just chillin' with my man Ten. I like that I don’t have to deal with our neighbors who rock the assholian stripes.

An aside: do they not break out in the chit chat with me because I’m deaf and too much for them to communicate with? OR is this more due to my not-exactly-welcoming, resting rabid Godzilla face?

Yes, I’m disabled. 

That sounds so all encompassing, so dire, though. I desperately miss music and conversational ease. I miss being in better, fighting form but the show’s not over yet. Who knows what’s beyond the next bend in the road? I have limits but don't we all?

Woke up, got outta bed – YEA me!

Woke with this tune circling my bean:

We are the champions, my friends
And we’ll keep on fighting till the end
We are the champions
We are the champions
No time for losers
‘Cause we are the champions
Of the world

In times of trouble it ain’t Mother Mary who comes to me – fuck no. It’s mia brill famiglia, meine awesome Freunde AND, as Daddy put it, my internal “cheerleader.” Yeah, that RAH, RAH, RAH ROM bitch is hardwired into my OS.

Birds gotta fly, snakes gotta slither, Donna’s gotta self-cheerlead.

Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.
~ Fred Rogers, The World According to Mister Rogers: Important Things to Remember 

It has been said that life has treated me harshly; and sometimes I have complained in my heart because many pleasures of human experience have been withheld from me…if much has been denied me, much, very much, has been given me…
~ Helen Keller, The Open Door

The thing about hearing loss is that no one can see it. Most people are so impatient; they just assume that the person with hearing loss is being rude, or slow-witted.
~ Marion Ross

 But what a humiliation for me when someone standing next to me heard a flute in the distance and I heard nothing, or someone standing next to me heard a shepherd singing and again I heard nothing. Such incidents drove me almost to despair; a little more of that and I would have ended my life - it was only my art that held me back.
~ Beethoven

Every day we should hear at least one little song, read one good poem, see one exquisite picture, and, if possible, speak a few sensible words.
~ Goethe

I have the Asperger’s syndrome and that means I’m sometimes a bit different from the norm. And - given the right circumstances - being different is a superpower. It makes you think differently. And especially in such a big crisis like this one we need to think outside the box. We need to think outside our current system, that we need people that think outside the box and who aren’t like everyone else.
~ Greta Thunberg

The body as home, but only if it is understood that bodies are never singular, but rather haunted, strengthened, underscored by countless other bodies.
~ Eli Clare, Exile and Pride: Disability, Queerness, and Liberation

No one is useless in this world who lightens the burdens of another.
~ Charles Dickens

I’m not in total control, I can’t ease the burdens/fix the probs/heal everyone I love – GODDAMMIT. I can make an effort, do what I capable of (and I’m a creative fuck. That helps, eh?) First, I gotta take care of my own banjaxed bod.

That involves patience. Possibly there’s an online sale on that shit at Target?