capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
According to my calculations, with the help of Wikipedia, I figure I’ve traveled (roughly) 54,520,000.000 kilometers (33,872,000.000 miles) around the sun, while the Sun has gone 402,674,976,000 kilometers (250,210,629,921 miles) in its journey around our galactic center.

Good thing I’m sitting down. I might get dizzy, otherwise.

Wonder what the next leg of this journey will bring.
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
  • Finalized a replacement wheelchair (via tele-health appointment) in September (August?) of 2020 (A process that began in January 2020); finally got confirmation that Medicare approved it in November. My old motor wheelchair died in January 2021. Spent two+ months in a rented, folding manual wheelchair. New Wheelchair arrived at the end of March. I did not learn until they were rolling it up my driveway (after I'd already paid the 20% co-pay) that the model of wheelchair I actually ordered had been discontinued, and nearly every detail of the design of this chair is different from the chair I thought I was getting.

  • I'm now fully vaccinated against COVID-19. The side effects were not so bad. But I'm still uneasy because of the Delta variant.

  • This year, after being in the public domain for over two years, the design I came up with for the Disability Pride flag suddenly got famous (someone made a Reddit post about it, I think). And at least a couple posts about it on Tumblr got over 10,000 notes each. With the increased sample size of eyeballs on it, enough people with visually-triggered epilepsy discovered that it created a flicker effect when they scrolled past it online, and some people had seizures because of that.

    So much of July was spent redesigning the flag, with several people helping out. Most people (including some who were hurt by the original), were kind and helpful. And now the new design (in my new default icon) is also in the public domain.


So, yeah. I think that catches you up on all the big news from me.
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
I've fallen down the Tumblr hole, it seems (ETA: I forgot to add -- you can find my Tumblr here: [tumblr.com profile] capricorn-0mnikorn). I've said before that I'll try to be more balanced in my presence(s). This is a start.

In the meantime, I had my second COVID vaccine shot, yesterday, and am feeling the side effects today -- not as bad as I was emotionally prepared for, but still vaguely headache-y and tired (along the lines of: "Hey, this is almost nothing!" until I try to actively do something).

So I will leave this here, for now, and I promise to be back tomorrow or the day after, when my entire immune system will have finished its war game emergency drills.

See you then!

Today

Feb. 29th, 2020 09:58 am
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
Is my 24th anniversary of signing the mortgage of this house (or the sixth, if I'm going by the Pirates of Penzace method of accounting).

Mixed feelings abound.

Have some Gilbert and Sullivan (with onscreen lyrics):
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
1) So, had a visit with my visiting physician, today. (For those who're not in-the-know, I'm functionally, if not technically, house-bound), and part of the visit was him filling out a questionnaire to petition Medicare to help pay for a new motor chair. According to the official rules, you're not allowed a new chair until the one you have is five years old and this one turned five this past July, The joystick/controller is being held up with string, there are over 1,000 miles on the odometer, and without a wheelchair I could not get up off the floor to dress myself, eat, or go to the bathroom. I also don't have the balance or strength to use a manual chair.

Still, the doctor said Medicare might still turn me down because motorized chairs (especially the tilt-in-space kind like I have) are really expensive, and they might deny my request for that reason alone, regardless of how much I need it. And why is it so expensive? Private Insurance Companies jack up the price, because they know their customers can't just do without.

The American Health "Care" System, Boys and Girls! (And of course, when I got this chair, Obama was president, now, it's Trump, and the Republicans want to make Medicare more stingy)

2) So, after my recent falling-in-love with Spongebob Squarepants: the Musical, I realized that I really missed living in NYC's cultural circle in general. Through YouTube's recommendation chain, I discovered the channel for Broadway Cares/Equity Fights AIDS a charity of the acting/theater community raising money for anyone living with HIV/AIDS and their families, plus other emergencies as approved on an ad-hoc basis, raising money at the theater where performances are held, and auctioning off paraphernalia from shows, etc. And eight times a year, they put on shows and competitions for theater folk, themselves. And then, they put the highlights on YouTube.

So that's another one I've subscribed to, so I can get periodic reminders of current theater culture.

3) One last thing re: Spongebob -- here's the cast doing their performance for the Broadway Cares/Equity Fights Aids spring show from last year ("The Easter Bonnet Competition"), where they answer the cynicism of "high Art" gatekeepers, with a number from another musical that just happens to be based on a cartoon:



As far as I can tell from an Internet Search, the young woman who sings the bridge in this song (Jai'len Christine Li Josey) also had her debut on Broadway with this show, along with Ethan Slater (Spongebob and Annie, here). And she'd better see her name in lights.
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
I called the local-to-me office, and was directed to Congressman McEachin’s government website, to send an email from there, so that my zip code (and thus my constituency status) could be confirmed.

This is what I wrote:

Dear Congressman Donald McEachin:

I am writing today to urge you to vote β€œNo” on H.R. 620 (β€œADA Education and Reform Act of 2017) when it comes up for a vote (Scheduled for Febuary [sic – oops] 15, 2018), filed under Civil Rights and Liberties, Minority Issues. According to the 2010 U.S. Census, 56.7 million, or 19% of Americans, are disabled and living outside of institutions (source: https://www.disabled-world.com/disability/statistics/cbfff.php), and thus, would be directly and adversely affected by this proposed legislation, not to mention the negative impact it would have on their family members.

The following is an excerpt from a summary of the bill, as written on Congress.gov:

"The bill prohibits civil actions based on the failure to remove an architectural barrier to access into an existing public accommodation unless: (1) the aggrieved person has provided to the owners or operators a written notice specific enough to identify the barrier, and (2) the owners or operators fail to provide the person with a written description outlining improvements that will be made to improve the barrier or they fail to remove the barrier or make substantial progress after providing such a description. The aggrieved person’s notice must specify: (1) the address of the property, (2) the specific ADA sections alleged to have been violated, (3) whether a request for assistance in removing an architectural barrier was made, and (4) whether the barrier was permanent or temporary. ”

The Americans with Disabilities Act was passed into law over 27 years ago, and even at the time, a grace period of 18 months was already written into the law in order to give businesses a chance to come into compliance.

The only legal protection that the Americans with Disabilities Act gives to citizens was the right to seek redress in court, if a business or employer denies them equal access to goods, services or jobs that are available to every other citizen. If The ADA Education and Reform Act were to become law, it would hobble these protections even further. In no other domain of public life is ignorance of the law a valid defense. And to ask the victims of discrimination to bear the sole responsibility for enforcement of the laws meant to protect them is a travesty.

Therefore, I urge you again to vote β€œno” on this bill. Thank you for your continued support of minorities in your district.

Sincerely,
[My name]
capri0mni: Pencil sketch of a thought balloon in three-d, with the word "sigh" (Sigh)
I have no idea where I caught this thing from... I'm functionally housebound, and the only person I come in contact with regularly is my aide.

She was down with a cold over a week ago (maybe two weeks), and I didn't catch any of her symptoms then, and my symptoms (Started with a sudden sore throat Friday morning, and runny nose, both of which quickly diminished, but were followed fever and headache soon after) are different from hers, anyway...

I did get a new delivery by UPS earlier in the week, which had been sitting in my room for a few days. And the package finally opened the Thursday night before bed...

I'm wondering if I could have caught something from an overworked warehouse employee who sneezed their germs all over the contents as they taped up the box... Although the box was not airtight, the packaging inside the box was.

Is't possible?

(I seem to have shed my "Ugh!" icon... If I had the energy, I'd make a new one. But my head feels like it's stuffed with shredded, soggy cardboard.)
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
One of my mutual followers posted this, and asked help in making it go viral.

So I'm sharing it here, in my other social circle:

If the Nazis don't want you dead, they want you recruited.
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
The Monsters' Rhapsody: Disability, Culture, & Identity entered the world as an ink-and-paper bundle of joy on August 4, 2016.

In that time, 17 copies have sold: 3 to me (for technical reasons) and 14 to other people.

Somewhere on YouTube, I watched a vid of a panel of authors talking about self publishing, and one of them said that even when you get published via the traditional route (unless you're a Big Name Author that the publishing house is actively promoting), selling 200 copies a year is par for the course.

Considering that she was talking about prose books, and (if I recall correctly) her own work was of a traditional fiction sub-genre, and my book is poetry and it has an esoteric focus (unlike, say love poetry, or straight-up autobiography/confessional/abuse survival), I'm rather pleased to be within sight of 10% of that.*

Anyway, yesterday, I got it into head to try and convert my book from ink-and-paper to pixel-and-silicon by August 4, this year. ...

And this was after the computer I composed the book on died, so I had to re-download the PDF Lulu.com has on file, and go through the whole thing and rework the format to make it ebook compatible. ... My Inner Critic is fretting and chewing her fingernails, 'cause whoever first composed ebook algorithms didn't take the requirements of poetry into account at all (like allowing extra lines between stanzas).

So wish me luck.



*(shameless plug) If you'd like to help me get to a full 10% of Par For the Course, you can buy the book either at Lulu.com (where there's a 20% discount, and I earn $1.69):

Support independent publishing: Buy this book on Lulu.


or on Amazon (where there is no discount, and I earn $0.03 from the U.S., and $0.33 from the UK [no, I have no idea why I get more money from a foreign-to-me seller])
(/shameless plug)
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
http://www.nytimes.com/1990/03/14/us/disabled-protest-and-are-arrested.html

(Quote)
WASHINGTON, March 13β€” More than 100 protesters in wheelchairs were arrested today in the Capitol Rotunda after they boisterously demonstrated for swift passage of a civil rights bill for the millions of Americans with physical and mental disabilities.
(Unquote)

"Boisterous!" -- It's one of my favorite words, but... in this context? Seems a little disablist to me. What about you?
capri0mni: a vaguely dog-like beast, bristling, saying: grah! (GRAH)
Last night, I decided to check out the Mudcat forum (folk music and blues), and near the top of the page, there was this thread:

Obit: Andy M. Stewart (1952-2015)

That's the "saddened" part of this post. Here's my addition to the thread (as "Guest"-- hadn't realized my cookie had expired):

Quote:
Aw... Dammit.

I hadn't heard him perform in quite a while, but I was blessed enough to have heard him live in several performances. He was a great singer, songwriter, and a gracious performer on stage.

Unquote.

Now comes the "Enraged" portion of this post.

Today, while looking for web pages about him and his music, I came across the crowdfunding page his sister had put up to help him pay for his medical bills (it had not reached the goal by the time he'd died), and therein, she explains why she needs to raise money for him, including this passage (the added emphasis is mine):

Quote:
Having lost so much my brother is facing a situation where he will need to leave his home and move to wheelchair friendly accommodation. He will need daily nursing care to assist his living. He does not 'meet the criteria' for entitlement to a motorised wheelchair because he has the use of his arms, even though this kept him housebound for many months. Except for when someone visits to help get him out of the house that's what he will go back to.

Unquote.
(The crowdfunding page is here: https://www.youcaring.com/medical-fundraiser/help-andy-m-get-mobile-/318806 It's now raising money for a funeral)

Okay. So I am under no illusion that having a motorized chair would definitely have lengthened his life (it might have... a little). But I do know from experience that spending extra time and physical energy just getting from one end of your house to the other puts a real damper on creative writing. The world could certainly have used more songs and humor from this fellow. And we are all poorer for the loss.

Now -- what about all the wonderful, creative people in this world who became disabled before they were famous?! What is the world missing? All because of fear mongering about fraud and disabled people "scrounging off" Society.

So I'm going to take a moment to lay deeply felt curse against those who keep trying to "tighten the restrictions on entitlement 'criteria'":

May every sweet thing you bite turn to ashes and hair in your mouth
And may every draught you swallow turn to mouldy slime.


And here: have an article (link courtesy of [personal profile] jesse_the_k) about the real value of motorized chairs: Don't worry, he won't get far on foot -- he's dead

To end on a more upbeat note, have a video of Andy M. Stewart performing one of the songs he'd written, back in the day:

(I still don't have audio, but I've been in the audience when he's performed it on stage)
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
Some of [profile] ysabetwordsmth's close family are dealing with a bad batch of mayhem. They're stuck in Albuquerque, need to get home to (As [profile] ysabetwordsmth puts it) "Chicagoland," and they need to buy a car sturdy enough to get them there. They've set up an emergency fund here: https://www.paypal.me/TrevorEdwards

And every little bit helps.

So -- can we give them a happy story to tell at next year's Thanksgiving table?
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
Some of [profile] ysabetwordsmth's family are dealing with a bad batch of mayhem -- their car has died half-way through a cross-country trip with no large city nearby, and repair costs are more than they have in their budget.

To help raise money for the emergency fund, [personal profile] dialecticdreamer has put up a prompt call. For a $5 or more donation, she'll write a just-for-you 500-word ficlet based on your prompt, on the theme "Pay it forward" or "helping hands."

She's put the details in a post, here: http://dialecticdreamer.dreamwidth.org/181870.html. She's a very good writer, and a dollar per drabble's worth of story from her is an excellent deal.
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
It's just the start of Autumn. It's also still dark enough outside that the streetlamps are still on.

And yet, I hear a mockingbird, somewhere close -- sounds like he (?) might be in the holly tree just outside my office window.*

He's "Scrolling through" his repertoire of different bird calls -- loudly. But, unlike the "Let me show off my skills & endurance" songs that mockingbirds perform in the spring, this one has no quality that I would consider "Musical." And besides, I can't remember ever hearing any mockingbird call like that after early June.

... And, in the time it's taken me to type this, it's gone quiet, and the streetlamps have gone out.

Still, I hope everything's okay for my feathery neighbors.

*The berries, are full size, now. And are turning a darker shade of green. Before long, they'll be truly red, and ready for their Christmas card closeups.
capri0mni: text: "5 things" with a triangle, heart, right arrow, star, and a question mark (5 things)
1: How long do you think it'll be before this recent picture of Pluto (7-7-2015) gets turned into memes, macros, and icons everywhere?

{... give me an hour, maybe, at least for here? ;-)}

2: On this week's Radiolab (Wednesday), there was an interview with two men who are both completely blind (Audio -- sorry there's no transcript).

The man whose blindness developed gradually decided that to be fully present and connected to the world, he had to break himself of the habit of "Visualizing" anything, and to conceptualize the world entirely using his other four senses. Because to do otherwise would mean clinging to his memory of a world that doesn't exist anymore.

The man who lost his sight in a single, devastating, moment insisted that to retain your full humanity, you have to imagine a visual world, even if you have to work at it, because humans are visual creatures, full stop.

Yeah. You can probably guess which side of the argument I side with; I'd be more sympathetic to the second man, if he hadn't insisted what was true for him was true for 6,999,999,999 other people.

Anyway, it occurred to me afterward that, compared to blind people, we sighties really live in a 2-D world (well, 3-D, but that's only if you include "Time"). Compared to the actual space around us, the surfaces of our retinas are really, really, flat. After all, that's the only reason we can get away with trompe-loeil at all.

3. The weather is brain-meltingly hot and humid, here. So this item will only be two sentences long.

4. Doctor Who Series 9 will start September 19th! Permission to Squee? I still don't have any headphones or speakers, so I don't know how the official trailer sounds.

But:

Does it seem like Capaldi's hair is channeling the spirit of Doctor Four? Or is that just me? ;-)

5. Speaking of dates in the calender being closer than they appear, I don't think I'll be able to meet my self-imposed date for getting Monsters' Legacy: Disability, Culture and Identity self-published. I mean, maybe I could. But only if I worked a lot faster than I seem to be able to at the moment (*points to #3*), and only if I skipped getting the prose portions beta-read. And I don't want to skip that. *sigh*
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
On Friday, this story aired on NPR's Morning Edition: Does reading Harry Potter have an effect on your behavior? (link to audio and written transcript).

...I may have also let out a vocal "Whoo-Hoo! Score one for the storytellers!" because it's one thing to know for yourself that something good is also true, but it's a whole 'nother reason to celebrate when that truth is publicly acknowledged.

So of course, I had to spread the Happy.
capri0mni: Text: "an honorable retreat ... not with bag and baggage, yet scrip and scrippage. (Scrippage)
(From my Camp NaNoWriMo project):

THE QUESTION:

I navigate the steepness of the path
As gravel slides beneath my rolling wheels,
To join the stranger standing on the bank,
And share, in silence, the beauty of this place.
The curve of Highlands across the river's breadth,
The murmur of the water against stone,
The golden blush of light that fills the sky,
All this helps me forget the ticking clock.
Read more... )

*squee!*

Jun. 16th, 2014 02:47 pm
capri0mni: A shaggy, multicolored monster with a lion's tail and human feet, holding a blue flower (shaggy flower monster)
A hummingbird! I actually saw a hummingbird outside my office window, just now... less than a foot from the other side of the glass...

That's got to be a good omen, right?

^_^
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Cake!)
While I was eating breakfast, looking out the window, I saw an Eastern Bluebird perched on the trunk of the longleaf pine in my back yard. There was a wall, and a window pane, between us, sure -- but it couldn't have been more than ten feet away.

I don't know if it was the bluebird of happiness, but it made me happy to see it -- all through my childhood, it was listed as a threatened species, so this is the first time I'd seen one in 3-D. Three Cheers for Voluntary Nature Conservancy!

(It looked a lot rounder and fluffier than the ones in the Wikipedia pictures, 'cause its feathers were all pooffed up against a brisk north wind, but it was just as bright blue and brick red).
capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
The house is being painted, today and tomorrow (mostly "Pueblo Red" [aka: reddish brown] and "Almond Cream" [pale yellow]),* so at some point, when they get back to this office, my computer and phone will be unplugged. So if you wonder where I am, that's where...

*With "Soft rabbit brown" for my bedroom and a Navy blue for Audrey's.

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capri0mni: A black Skull & Crossbones with the Online Disability Pride Flag as a background (Default)
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