capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
This is a "chat" I posted to my Tumblr, today. And I'm posting it now, in response to This story segment from [personal profile] dialecticdreamer, and the ensuing discussion.

Disabled Person: I need a wheelchair.

Wheelchair Manufacturer: We won't sell you one unless Medicare will pay for it*

Disabled Person: I need a wheelchair.

Medicare: Can you walk 20 feet?

Disabled Person: It's 40 feet from my front door to my bedroom...

Medicare: Can you walk 20 feet?

Disabled Person: I can, but it's excruciatingly painful, my balance is terrible, and I risk falling at every step.

Medicare: Then No.

Disabled Person: Why not?

Read more... )

*Footnote: Even if you are wealthy enough to purchase a wheelchair out-of-pocket, many suppliers still require proof of insurance. And even private insurers copy Medicare's policies when it comes medical equipment and mobility aids.
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
This is the original one, I came up with last year:
Disability Pride flag HD

Image description )

Symbolism )

A while after I posted it I posted it to Tumblr, someone asked that I put a fifth stripe in, to represent invisible illnesses (which I had folded in with both mental illness and physical disability, but she pointed out that people with invisible disabilities are often made to feel that they don't count, or are "faking," and being specifically acknowledged would help break that stigma, and as she is someone with an invisible disability, I took her word for it.

Well, yesterday, I was in the mood to work on something visual, so decided to take a bit of time to tweak this... Half a day later, I got this:
disability pride 2

Image description )

And, because I forgot to write this down the first time, and had to figure out how to do it again from scratch:

Method of construction )
capriuni: Text: "Everyone! Grab a spoon. We need to Move the Ocean!" (Ocean)
Content warning for discussion of filicide and murder of the Disabled )

In America, too, March is Cerebral Palsy Awareness Month ("Awareness" Months/Weeks/Days, as a rule, generally frame whatever they focus on as a bad and scary threat: "Psst! Were you aware of the monster under your bed?").
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
Disability Pride Flag (concept)
[Image description: A black flag diagonally crossed from the top of the hoist to the bottom of the fly by a four-color "Lightning bolt" in stripes of blue, gold, green and red (three long sections running from hoist to fly, alternating with two short sections from fly to hoist), Description ends]

My “Artist’s Statement” about this Flag:

1) The black field:

Black has three significant meanings:

First: the color of mourning for all those disabled people who have been murdered in the name of “mercy.”

Second: the color of the pirates’ “Jolly Roger” flag, representing our determination to steal our lives back from those public (and private) ‘authorities,’ who use their power in an attempt keep us marginalized.

Third: A reference to the Nazi Black Triangle badge, which was used to identify those whom the Nazis considered “antisocial“ and which has been adopted in Britain to protest the government’s austerity measures against the Disabled.

2) The “Lightning Bolt” motif:

Diagonal lines have been traditionally used in the flags of former colonies, to represent breaking free from colonial powers (empire nations tend to have flags dominated by horizontal and vertical lines). And Disabled people’s lives have long been ‘colonized’ by the medical, religious, and educational establishments.

The zigzag shape represents how the Disabled people must continually navigate around the structural and attitudinal barriers erected throughout normate society, and also the creative, ‘lateral,’ thinking we have to use to solve problems each day.

3) The individual colors represent broad categories of disabilities:

Blue: mental illness disabilities

Yellow: Cognitive and intellectual disabilities

Green: Sensory perception disabilities

Red: Physical disabilities

So -- would you fly this flag? I really am curious.
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
glad rather than

[Image description: Word art that reads (quote): “You know what? I’m Glad I’m Disabled rather than Dead.” (end quote). The letters are colored with radiating bands of contrasting hues against a black field; ‘I’m Glad I’m Disabled’ is in bright, floral colors, and ‘rather than Dead’ fades to muddy shades of gray. Description ends]

Because it should be obvious that it's better to be disabled than dead. But all the rhetoric around that movie Me Before You shows that it's not obvious.

And I got tired of that, so decided to make something loud and bold saying what shouldn't need to be said.
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)

A Web-Wide festival, every First of May (this coming Sunday), for generating new content (not reposts or reblogs) fighting the evils of Ableism and Disablism. This will be it's ELEVENTH YEAR. And all previous ten years are archived, and accessible through this link.

Signal Boosting (while my blog bunnies are making whoopee -- I wonder what idea to post will pop out on that day...).

In the meantime, if you’ve ever been stumped trying to explain “Ableism” or “Disablism” to clueless kith and kin, take a meander through the archives. You’re bound to find something useful.

I'll probably be posting something over on my new Tumblr blog, as I'm busy constructing that as a Disability-Identity centric space (with fandom and silliness at the edges). That can be found here:
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)

WASHINGTON, March 13— 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.

"Boisterous!" -- It's one of my favorite words, but... in this context? Seems a little disablist to me. What about you?
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
I've made a new tee-shirt design and posted it to my Store at You can see it, here:

(It's a "Message Tee" with the slogan: NATURE Adores Diversity)

Detailed description here for those with screen readers

The word "nature" is in a bright floral colored camouflage (like) pattern against black. The letters in "Diversity" are a diverse set of fonts; the "v" is replaced by a LGBTA-Pride striped heart, and the "e" is turned into the wheel on a blue "Wheelchair Access" symbol.

The text is in two lines, and is positioned high on the chest, so it can be more easily read when the wearer is sitting in a wheelchair.
(Description ends)
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
(Cross-posted from my page)

Note well: I've crossed my word count goal, but not my "Got something-down-for-all-the-parts draft-- hooray!" goal. For that, I'm going to keep working through the month, and I, in sync with the overall NaNoWriMo spirit, want to get that completed before I go to bed on the 30th.

Last July, for Camp NaNo, I wrote a collection of poems on the Disability Experience, and Ableism. This time, for camp, I'm writing commentary and "Further information" notes on each of the poems. I have (roughly) 8 1/2 pieces of commentary left to write, and (roughly) 6 1/2 days to write them in. So it's still going to be a mad push to the (personal) finish line.

(There are either 20 or 25 poems in the collection, depending on how you count, and two songs, total).

And yes, this is just the roughest of drafts, after that will be rewrites of the commentary and probably some of the poems, too. ...But it would be nice to have all the parts ready for polishing at the end of this month. This July 26 will be the 25th anniversary of the signing of the ADA into law (such a bittersweet victory). So I'd like to have this book ready to print-on-demand by then, to commemorate that.
capriuni: a vaguely dog-like beast, bristling, saying: grah! (GRAH)
I know I've talked about this, here, before. But my recent decision to include the word "Spastic" in the title of this poem has brought the issue of how we talk about about cerebral palsy from my hippocampus to the front-left of my neocortex.


The following quote is the first sentence in the third paragraph on this page: Understanding Cerebral Palsy: Basic Information from a site which digests basic medical information for the lay public, and is thus often the first place many Americans go to learn about different medical conditions and symptoms.

In my Web searches regarding CP through the years, I've found this sentence quoted verbatim over and over (I swear: sometimes I think 90% of the Web is written by 12-year old boys, who think copying paragraphs out of their class textbooks = writing an essay). So that parents, on first hearing the diagnosis "Cerebral Palsy," anxious to educate themselves, and worried about their child's future will see this over and over:

Between 35% and 50% of all children with CP will have an accompanying seizure disorder and some level of mental retardation.

(End Quote)

But how does this enrage me? Let me count the ways (so MANY ways-- cut for length): )

And now, to my allusion to the Hippocratic Oath: Words are powerful. What they denote and connote shape our intellectual understanding and our gut reactions simultaneously. The passage I'm complaining about has only 21 words. These words were reviewed (and, I assume, approved) by a medical doctor [Reviewed by Neil Lava, MD on March 10, 2014]. But those words are sloppy, and are skewed toward a frightening interpretation of their subject. Many children will have to live with (And try to find coping mechanisms for dealing with) adults whose preconceptions are shaped by these very words. That is harmful. That is bad medical ethics.

At the very end of WebMD's two-page summary of cerebral palsy, two sources are cited for the information in the article, but there are no footnotes telling the reader which bits of information come from which source.

The first is openly available on the Web: United Cerebral Palsy Association.

The second is a professional handbook written for doctors: Developmental and Behavioral Pediatrics: A handbook for primary care (link to the listing in Google Books; there's no ebook version available, and Google hasn't "found any reviews in the usual places.")
capriuni: Text: "an honorable retreat ... not with bag and baggage, yet scrip and scrippage. (Scrippage)
(or: “Why I am a fan of 'Doctor Who'”)

I learned to tell a story at age two
(Propped up between my parents on the couch
With season one of “Star Trek” on the screen) …
At least, I learned the pacing of suspense.
Unable, as I was, to run away,
I'd listen for the changing music. Then
I'd plug my ears, and close my eyes up tight
And wait until the scary moment passed.
I never feared the slime, or scales, or claws;
It was the lasers' flash and angry shouts
That always happened – every episode –
As soon as any “creature” came on-screen.
Did I understand, as young as that,
That I was, too, a monster in their eyes?
My diff'rence, too, was something that they feared?

[ETA: That's the third edit of that final line within the last 20 minutes]
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
This is precisely what I've been trying to say to everyone in my life, and I keep getting (what seem to be) blank stares in response (hard to tell, in text-space). So I may be spamming my email address book with this, today... I haven't decided yet.

The latest entry from Dave Hingsburger's Blog (June 4, 2014):

The Conversation, Implication, and the Danish

Denmark has stated that they will be Down Syndrome free by 2030 and the announcement was made as if they have achieved some kind of great accomplishment. The eradication of Down Syndrome is made possible by ignorance about Down Syndrome and about Disability. I am thinking of this as [the] young man is speaking to me. A young man full of life who wants more life. A young man who doesn't, as the geneticists may think, mourn his own birth.

Do you think I will have Down Syndrome in heaven? he asks me. I asked why he was asking the question and he said that he'd been told that there wasn't any disability in heaven. As I believe that in heaven the common language isn't Danish, I told him, I think we will all be who we are, really are, when we get to heaven.

Good, he said.
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
The show was pleasant to watch -- one pre-review of it that I heard on the radio, earlier this week, was that it "Wasn't as funny as it should be, considering..." but that it would likely grow into itself. I can kind of see where the reviewer was coming from, but on the other hand, two thoughts:

I don't really know if there should be a "should be" -- what was he expecting? The same sort of sitcom humor that was written into Spin City, thirteen years ago (I had to look up its original run on Wikipedia, I was sure it was more like 20 years ago)? Different character, different situation, different sort of humor...

And I'm pretty sure that the humor at the TABs' expense(s), where people gush about how "inspirational" and "brave" he is, went right over his able-bodied privileged head...

In other news (less well advertised, I only found out about it when I went onto NBC's website to double-check the info on the MJF show): NBC is also rebooting their old Ironside series, with Blair Underwood (able-bodied actor) in the titular role (so they can show him being a "normal" cop in flashbacks). The official premier is October 3, but they're previewing the entire first episode online. It follows your typical "Vigilante Cop" trope, but the self-pity is kept to a minimum, no whining for a cure, and no push handles on his chair. And in one scene, he's the first person to spot a key piece of evidence, because he's got a different line of sight than the other detectives, and I thought that was a nice touch. So I'll probably reward NBC with my eyeballs for a few more episodes, yet...
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
It'a a combination word puzzle and a Disability Awareness Exercise, and I know folks in my circle who enjoy both, so:

[Begin Quote]
I have always believed that those, 'ride around in a chair for an hour to experience how hard it is to be a disabled person' kind of exercises are both patronising and counter-productive. You cannot take a 'tourist' approach to difference. I believe asking someone to write a paragraph without using the letter 'e' is a much better exercise. I know I've written about this before, but I want to revisit this. The whole time the pen is in hand the mind is thinking and evaluating, options - that's life with a disability.

Try it now. Translate this sentence into one that doesn't use the letter 'e':

My home is my castle where I eat and sleep.
[End Quote]

(and yes, I'm trying it -- haven't gotten there yet).

[ETA: This cut is hiding my solution )]
capriuni: A black field crossed by five parallel lighting bolts in blue, gold, green, red, and purple (Default)
I'm not complaining... ;-) -- Because that show, more than any other I ever remember following (including several iterations of Star Trek, Quantum Leap, and Max Headroom) really was about Geek Pride as its subject matter and theme.
Anyway, one of the videos related to Chuck that I watched, recently, was a two-hour interview/conversation with the star of the show (Zac Levi), and I was rather chuffed to hear him define "nerd" in the same basic way I define "geek" (someone who cares more for the subject of their passion than they are worried of making a "sideshow freak" of themselves, by expressing that passion).

So this post has two main purposes: To express a tiny "hooray!" that I'm seeing more people express my broader definition of "Geek" than just a math/science/computer whiz, and:

To state my newest realization: That "Geek" and "nerd" are more synonymous than I've long given them credit for. "Geek" dates back to the 15th Century, it's true. But its modern incarnation was as a side-show exhibit. "Nerd" was a word invented by Dr. Seuss. But it was a word for a creature in a zoo. In other words, both "Geek" and "nerd" are framed in the context of being stared at.

It has one secondary purpose: all this thinking about thinking about geekdom prompted me to go look through my archives for this post, which was written as an expression of frustration that Network TV (NBC) shows so little respect for Geeks (Chuck): More Geek pride geekery. I closed that post with the following:

"I was going to go on, and write further about geekery and disability. But this has taken up too much space-time already."

...And now, I must admit that I can't remember a jot of what I wanted to say about the disability connection. Oops?

Maybe it will come back to me...But here's the scene from Chuck that inspired that post:

More detail than is warranted about the now-dead series, including a video clip of a scene that made me cheer out loud when I saw it on my TV. I think I may actually have said: 'Squee!' )


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