Sara

There are those people online that you never get to meet but suspect could be your very best friend if they only lived closer. I tend to work them into daily offline conversations sometimes, with references that don't sound as strange as they used to ten years ago: My Friend From Chisago County (only she doesn't live in Chisago County anymore), SuezBoo in South Africa, The Dancer in NYC, Sara in Massachusetts (you know, the one who takes photos of love potatoes).

You hope to travel, meet for lunch. You trade notes and laugh out loud, long-distance, at their clever crush-worthy minds.

You are heartbroken when you finally understand that the small portion of their greatness that you already got to see is all you will be so lucky to share.

Still more links

I mentioned these additions in comments to the last link love post, but these blogs deserve their own announcement too:

Followed Lingling as She Gave Lymphoma a Beatdown
The Sakurako Chronicles
Three Rivers Fog
Whose Planet Is It Anyway?

Okay, more link love for blogroll

My friend Amanda asked in comments yesterday if I could point out any cancer blogs because my sidebar blogroll is a bit intimidating in length. When I started this blog about four-and-a-half years ago and started building that big blogroll, I tended to not choose blogs that were mostly about posting on what drugs the blogger was taking and how much energy they had that day. I was looking for expressions -- even homey ones -- of disability as a social/political condition.

Specifically, I remember passing by a number of blogs by people with MS where the posts were almost exclusively about medications being taken, dosage, side-effects, effectiveness, etc. I wanted to hear whether or not their apartment was accessible or if coworkers were cutting them some slack when they were weary, if they were passing as nondisabled or revealed their condition at work and to family. If the diagnosis was accepted and believed.

But writing about many of those details presumes that the writer connects their illness or condition to the state of the environment around them and not just to the imperfect state of their body. And that doesn't always happen, or doesn't happen for a long time, for a number of good reasons. Often it's not the most pressing, consuming issue. It can take some time out there on the ground, in the streets, to notice what the social/political dimensions of disability are, especially if you are passing fairly easily. And many people (maybe most) resist joining up as one of "the disabled" because of what it means to their self-perception. There are quadriplegics out there who are okay with talking about social discrimination and the limitations of their physical bodies, yet they deny being "disabled," either semantically or categorically. I don't understand that latter, but I've also never been interested in arguing the point with those folk, so they tend not to make the blogroll either.

So, for those reasons and also my own blogroll-building shortsightedness, my blogroll is pretty lacking in some areas. Cancer blogs is one of those areas, though there is some scant representation:

Two of my favorite bloggers (and favorite online people), Sara of Moving Right Along and Jana of Pilgrim Steps each have amputated limbs because of cancer. You can see how my bias works right there -- they're part of my blogroll and daily reading because I relate to how they write about mobility issues and the social aspects of that. It just happens -- to me, though it's quite central in the story to each of them, I am sure -- that cancer was their path to disability awareness.

Now I think on it, I'd be pressed to name the diagnoses of most people on the blogroll, if it isn't clear in their blog's name. I'm more aware of particular impairment details of who uses a wheelchair or prosthesis, is autistic or blind, is bipolar or otherwise focused on mental health issues. I'm not uncaring, though clueless might be an apt accusation. The philosophy behind my sidebar means it's not particularly useful to anyone looking for a blog about a specific impairment or medical concern.

Another of the many failings of my sidebar is that it was set up to privilege the voices of disabled people writing about disability, and generally places nondisabled bloggers who also write on disability in a separate listing ("gimp parades" and "other parades"). Except for some nondisabled people who focus solely on disability issues and come to the topic as parents or college students. It's a muddy plan that fails to acknowledge Daisy or Feministe, for example. I'm not sure what to do about that because the list is too long to not categorize it in some manner, and since I won't divide people up by diagnoses (that won't happen), commitment to writing to the issue seems best.

Yet another sidebar dilemma, by the way, is my atrociously disappointing index. It's workable in a limited sense, but I hate having terms like "amputee," "blind," "dwarf" there. Is this a necessary evil to make the archives here accessible? Any suggestions on how to create a useful index that feels less like reducing people to diagnoses or labels would be appreciated. If someone has an index you like, leave a link to it, please.

Anyway, back to Amanda's comment. Here's a little link love for four blogs of people who have or have had cancer and are already on my sidebar:

As The Tumor Turns -- No longer being updated because of a successful prognosis.

Moving Right Along -- I can't say Sara writes about cancer, but she writes about her life and the four-year ride since it entered her life. She specifically began her blog because when she faced amputation of her leg, she went looking online for reasons to do the surgery and keep living. (That's the basic exploration of all disability blogs, imo: How do we, individually and as a society, do... all of this?) Also: bundt cake recipes and the occasional Mad Science Sunday.

My Private Casbah -- Bint has written some about cancer, though perhaps significantly, there's no clear path to that topic in her indexing. What she excels at most is intersectionality, ally-work and writing critically about the social justice issues of disability, race, sexual orientation and gender while generously engaging opposing viewpoints in comments.

Pilgrim Steps -- Again, cancer is not the point of the blog but part of the writer's history. Jana also takes incredible flower photos. And recently she's written eloquently about her Mormon heritage and Prop 8. And this is a must-read on how some Mormon elders equate homosexuality with disability because both groups are just too broken to marry and attain full stature in heaven.

And I'm adding these two cancer blogs to my sidebar. Other recommendations welcome:

The Assertive Cancer Patient
Not Just About Cancer

A little bit of link love

My sidebar needs a lot of updating, but here's a start. Ten new links:

Amber Tracker
Autist's Corner
DeafRead
Inside the Little Plastic Castle
Laura Hershey: Writer, Poet, Activist
Life of John
Media Dis&Dat
PhilosopherCrip
Special Needs Truth '08
Suela

Save Bitch Magazine

Bitch Magazine, one of my favorite magazines, is in desperate need of a little financial help in order to keep publishing "the feminist response to pop culture" they do so well. If you're a supporter, now is the time they need your help. If you're curious what they're all about, subscribe or order a back issue or two.

I'd describe Bitch as disability-friendly, occasionally offering articles from a disability perspective and open to more, if their submissions page is any indication. Future issues will be built around themes of these words: "Buzz," "Consumed", "Art/See", and "Old." Keywords suggested to flesh out those theme words include "pharmacy", "disease and economy", "vision and blindness", and "aging, history and marginalization".

I donated just a few bucks. If you have a few to spare, I believe it's a very worthy publication.

Happy Cinco de Mayo

Apparently, "wheelchair guy" in Mexico is more interesting than his relative to the north.
















Image description: Two identical simply-stenciled images in bright red paint on a wall. The universal wheelchair access guy holds a gun (rifle, machine gun?) in an upraised hand as he sits inside a five-pointed star. Posted at Flickr by rsinghabout, the image is indexed under "San Cristobal," "Chiapas," "Mexico," "2007."












Image description: On the slope where a sidewalk ramps leads into a street in Mexico City, Mexico, a variation of universal wheelchair access guy is stenciled in black over yellow paint. This guy faces left instead of right and has a very large round head. Posted on Flickr by daquella manera.












Image description: On a large post painted green a round white stencil graffiti painting. The background of the image is white and the wheelchair guy is the color of the green post. He's a completely stylized version of the universal symbol, facing left. He has a very large oblong head with giant eyes, like an alien or maybe a Day of the Dead skeleton. He doesn't appear to have legs but his torso looks a little like ribs, though that may be a function of the illustration since the chair cushion, the chair's arm and the guy's body are all the same color green and each is cleverly articulated despite he drawing's simplicity. The manual chair looks light and speedy. Posted on Flickr by ultraclay!

Yeeeeaay!

This makes me happier than I can possibly say.

Back again, but this time here to stay

My introduction at Alas, A Blog:

Hi all. My name is Kay Olson (known in the past and in the archives here as Blue or Blue Lily) and I write over at The Gimp Parade about disability. I blogged here as a guest last year, but Amp has asked me to join Alas as a regular co-blogger and I'm thrilled to be here.

A little about me: I'm a 39-year-old Minnesotan. I live in the small rural town I was born in, though I went to high school in Naperville, Illinois, and got several college degrees at Arizona State during my 13 years living in Tempe. My degrees are in English, political science and public administration and wherever possible in my studies I explored minority or diversity issues -- when disability wasn't an available option, I studied race or gender or any intersection of these identities.

I was born with a rare progressive neuromuscular condition that falls under the umbrella of muscular dystrophies. I've used a wheelchair or scooter for all mobility since 1983 when I was in ninth grade, and for the past two years I've had a feeding tube, a trach and used a ventilator full-time for breathing. Technically, I am unemployed, but I spend much of each day with people employed to help me 24/7, training them, managing their care of my needs, helping with scheduling, medical supplies, etc. I am a source of income for two full-time LPNs and up to five part-time LPNs and RNs, not counting the agency I must go through for their state-paid assistance. I live with my parents in a house they were able to build with full accessibility in mind, though I very nearly ended up in a scary nursing home less than two years ago. As you might imagine, if you haven't already visited my blog, I write a lot about my experiences with the medical community and how they are shaped by politics, bureaucracy and disability stereotypes and prejudice.

My hope here at Alas, other than writing coherently on a regular basis and learning from discussions, will be to bring current disability issues to a wider audience, put them into a feminist context when possible, and promote the writing of other disabled folks online. Mandolin's lovely October post, "Feminism is not your expectation," linked my blog as the sole example of disability in feminism but there's an incredible variety of disabled feminist bloggers out there I'd love to see recognized.

So, although I don't know if all these bloggers proudly identify as feminists, here is a list of some great disability bloggers that often speak to issues of feminism as well. Although this particular list doesn't include any non-Western disabled bloggers and very few disabled male bloggers (the latter are either less likely to be making connections between being a woman and disabled, or I am less apt at seeing the connections they make), it is otherwise fairly diverse with regard to age, race, ethnicity, religion, sexual orientation and disability:

Ballastexistenz
Big Noise
Biodiverse Resistance
Diary of a Goldfish
Disability Culture Watch
FRIDA (Feminist Response in Disability Activism)
Ms. Crip Chick
Moving Right Along
My Private Casbah
Pilgrim Steps
Retired Waif
Screw Bronze!
Wheelchair Dancer
Writhe Safely

Thanks for having me, Amp.

Legs and other miscellanea

A follow-up to last week's post about "My fat (but actually very normal-sized) legs" to illustrate that I speak the truth: My legs are no longer skinny, but are also totally not fat, no matter how much the change in them surprises me or how much the media representation of "normal-sized" warps my brain even after years of being unhealthily underweight and wishing I was not.

Both of these photos were taken this past week, though frankly, the first one is just to show off my socks. Both are color pictures of me from mid-thigh down sitting in my white scooter. Vent tubing can be glimpsed here and there, as well as "The Tooth" (see endnote here) near my right knee in the second photo.















In the first I am wearing white print pajama pants pulled up to my knees to show long over-the-knee stripey cashmere socks in shades of green, brown, orange and light blue. Snazzy blue tennis shoes.

In the second photo I am wearing brown pants pulled up to my knees to reveal my sturdy looking pegs. Crew socks in a space-dyed purple-brown-dark green (psst! Elizabeth: Smartwool!), my hairy legs, and those same tennis shoes.

Here is a side-by-side comparison of my legs in '92 and today. Reminder: I am 5'11" and currently weigh about 125 pounds. That puts my BMI at 17.4, thoroughly in the "underweight" category even now.

On a different topic, an interesting Google search led here today:

"what would I look like with no skeleton?" (This blog is, inexplicably, the fifth best hit for that info.)

And, finally, the news that I no longer rank in even the top 100 options for the Google answer to the search: replacement parts for older japanese vacuums

I am sad.

Because I have an index category just for this

This isn't the most amazing picture of Elizabeth and her squirrel friend. (Hee hee, I wanted to say that as an excuse to mention her hilarious and very cool dolphin post, her very real and poignant post where she shares the pain and also to direct people over there who haven't yet clued into the greatness that is Screw Bronze!) You'll have to go there for the rest of the photos.

Image description: Screw Bronze's Elizabeth McClung sits in her manual wheelchair in a park feeding a squirrel. Hand held down by the back rim of her right rear wheel, a brown squirrel stretches up to reach the food she holds. The squirrel's front paws are holding onto the wheel rim. I believe his name is Twitchy, which is coincidentally also the name of all the woodland squirrels I know.

Gift train

Like a meme, only it can invade your snail mailbox:

Via Grace at What If No One's Watching? -- By the end of January, 2008, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.

I've taken the liberty of giving myself a month's more time to accomplish this. Also note that "tangible and physical" possibly means "whimsical and odd." If you respond, please also email me at kay.fine[at]gmail.com with your address.

Happy holidays.

On this site's "health-relatedness"

In the past two days I've gotten two emails because of what the senders said is this blog's "health-relatedness." One invites me to participate in a Brown University research study survey in "the area of health and medicine," and the other informs me that The Gimp Parade has won a 2007 Health Leader Award from the Irritable Bowel Syndrome Treatment website.

I haven't taken the survey yet, but I expect the questions about blogging on "health and medicine" will be as imperfect a fit as other health blogging surveys I've taken in the past. But I'll take the survey and hope my participation makes some tiny difference amidst all the "health and medicine" blogging by smarmy and/or compassionate doctor blogs, weary and dedicated nurse blogs, insurance and managed care blogs, and whatever else qualifies. And I will graciously accept any award from a site or organization that says it seeks to honor those who "are squarely on the side of the patient."

But, you all know that "health and medicine" are not the topic of this blog, right? This blog is about social issues, culture and politics relating to disability rights. I realize there's some crossover that may be confusing, especially when I relate specifics of my impairments, hospital visits and such, but those are the details of how social issues, culture and politics come into play. They're the evidence of why disability rights is important. "Health" and "medicine" aren't even in my sidebar index (except as "health care" and "mental illness/health") because I don't perceive my writing here as promoting either health or medicine. Then again, neither "justice" or "respect" are in the index and they're what I think I'm writing about here every day.

This isn't the first time I've gotten email that I feel may or may not miss the point. I've gotten offers for free accessibility software or discounted accessible bathtubs if I blog about the product. I've gotten link requests from health care corporations and, most amusingly, for President Bush's New Freedom Initiative, which I recall saying critical things about at least once prior to the request. When I hosted Disability Blog Carnival #2 and the theme was "the cure" I turned down one doctor's submission on bowel health. (Apparently, my audience includes those concerned about poo, which is possibly everyone.)

Either through poor emailing habits or formally declining, I've opted out of several writing opportunities to new sites like [with]tv, Wikis on dis rights, and Disaboom, mainly because I don't want my primary goals for this blog to be used for someone else's corporate gain. And I don't want obligations to produce content to go beyond my having something relevant to write. Well, and also I am lazy.

I often wonder how the bigger bloggers field their email requests. Do they answer all or ignore most? In my worst nightmares I cannot imagine the in-boxes of Echidne or Jill at Feministe. I get a couple nice emails from CNN and I sort of freak out, you know? Though it did end well for me.

I've gotten some truly amazing emails, as well. A couple heartbreaking letters were sent from formerly institutionalized disabled people touched by my one-time CNN blog. The lawyer for Emilio Gonzales' mother thanked me for my coverage and support. One of Ruben Navarro's caregivers wrote to thank me and share that Ruben had a great sense of humor and has inspired her to persist in the field of mental health and disability. And the back-channel camaraderie with fellow dis bloggers that I love so much.

I don't really have any problem with this blog being categorized as about "health and medicine" so long as that never disqualifies it for the "social justice" or "politics" categories. I don't consider myself a "patient" or a "client" or a "customer of health care services" here, so much as a writer and activist. And hopefully a pain in the ass. But I will concede I am definitely "squarely on the side of the patient."

Image description: A small graphic banner reads "Health Leader 2007" with the date bracketed by gold stars.

Another episode of: Fun with Sitemeter!

Here are some recent searches that led to this blog. The first three make sense with regard to what I post. The others are interesting but obviously not my area of expertise. The last one confuses me utterly -- but I suspect the person making that search wasn't quite clear in the head either:

Chad Everett Medical Center

unable to pee on plane

preventing puberty in the disabled

why did diego rivera treat frida kahlo wrong

crazy parades in virginia

Natalie Merchant's rack

gimp tooth twinkle

squanto helped save this person's life?

famous stars that crip what sets they in

"Stay in your house!" part 2

Image description: A young white woman with curly hair sits in a power wheelchair on a city sidewalk. She smiles over the orange placard she holds that reads "Gimps are Hot, Crips are Sexy, We Want Access Too!" The sign is vertical and reaches from her shoulders to her mid-calves as she sits. Further description from the Flickr photo source sissyboystud: "Sarah holding a sign at our ADAPT Youth Summit Action. This sign is targeted at a nail salon with an inaccessible entrance. We have a right to be beautiful and pampered too!!"









Image description: Glastonbury in 2007. A man in a manual wheelchair smiles towards the camera as two men drag him backwards through thick viscous mud at a large gathering where the ground is mud everywhere. The man's feet are covered in mud, as are his gloved hands and the wheels of his chair. I think there's a concert stage and big screen in the far background. Flickr photo credit to Tonymc.









Image description: Three senior citizens are sitting in fancy dress in a banquet room with a table with flower arrangements behind them. The woman at left is in a lacy taupe dress and matching jacket with a white hat with a gauzy veil attached. She is reaching out and holding the hand of the man at left, seated in a wheelchair. He's wearing a traditional tuxedo with a boutonniere on the lapel. Between them is a woman sitting with hands folded in her lap across some papers. She's smiling at the couple. It looks like a wedding. Flickr photo credit to dosbears.

"Stay in your house!"

Or, you know, get out there and do your thing. . . .

Image description: A beautiful color photo of a blue-skied day off the coast of Alaska. Picture is taken from the upper deck of a cruise ship in a fjord, the white-capped mountains in the background and the water a vivid shade of aqua. The length of the ship can be seen in the middle-ground, and in the foreground by the railing of this upper deck are a couple in the shade of a bulky apparatus on the deck. One sits in a manual wheelchair, and they both look at the incredible view we see. Flickr photo credit to Todd Sheridan, tud5000.

Image description: A colorful photo from the 2007 Toronto Pride parade of a middle-aged white guy wearing just sneakers, shorts, a baseball cap and carnival beads as he rides a red four-wheeled electric scooter that is decked out in rainbow fabric and rainbow flowers. There's a large beach umbrella above him covered in the rainbow fabric, as is the front and back baskets of his scooter. Everything is trimmed with flowers in colors of the rainbow. The crowd watching the parade lines the street in the background. Flickr photo credit to hypersapiens.

Image description: Two women sit in power wheelchairs at the edge of a lake holding fishing rods. The sun is shining, the water is a vivid blue and there are trees lining the water's edge in the distance. Flickr photo credit to Karva Javi.

Request for technical help: I may have asked this before some time ago, but while I look back for that discussion, can anyone tell me how to use alt tags for photos in Firefox? I've tagged the first two of these three pics, but it only shows up using the Explorer browser. It doesn't show at all in Firefox. Any expertise appreciated.

Back

So, it was actually a lousy vacation. I've spent the bulk of my time with ugly digestive complaints or working through the various management issues of having a home health care agency up in my life 24/7. Or both. But anyway, there was good amidst the bureaucratic busy-ness and grumpy misery. Two highlights of my August were a family gathering in the far reaches of western Minnesota and meeting Brownfemipower while she was in St. Paul for the MALCS conference*.

The Gimp Compound inhabitants met with a dozen other Olsons, including the French branch of my cousinry, in the little city of Montevideo. We shared the courtyard of a great little coffeeshop with a local family where a father and a newborn son spent a few precious hours together while the former was briefly home on leave from Iraq. Poignant, that.

Brownfemipower and I met in the union of the University of Minnesota while my parents wandered around sucking up massive doses of alumi nostalgia. Like everyone I've met in person after getting to know online, BFP is just exactly herself, but more. One of the things we talked about was what candidates would be good for a Radical Hot Off of disabled celebrities. It shouldn't be, of course, but the question is deeply problematic: Mainstream celebrities people would be familiar enough to vote on don't celebrate their disability if they have one, disability is stereotypically seen as the antithesis of sexy, and iconic or noteworthy disabled characters in pop culture are usually performed in film by nondisabled celebrities. Our short list consisted entirely of Peter Dinklage. And while that makes the list perfection, I look forward to adding to it.

Anyway, I'm back.

* Mujeres Activas en Letras y Cambio Social (MALCS, Women Active in Letters and Social Change) is an organization of Chicanas/ Latinas and Native American women working in academia and in community settings with a common goal: to work toward the support, education and dissemination of Chicana/Latina and Native American women's issues.

Italy, what's up?

Why are hundreds of you Googling Aimee Mullins photos today?

Update 7/18: Hmm, my curiosity continues. What exactly has made hits to my site triple, and why is all the interest from all over Italy on Mullins?

The 8 random things meme

I've been tagged by 'Ryn!

Here we go:

The rules:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

Eight Random Facts:

1. I don't currently have a driver's license -- just a state ID -- but my identification has never been honest about my true height. I'm 5'11 and 3/4", or I was when my college roommate Michelle and I got drunk on screwdrivers while baking oatmeal-chocolate-chip-rum-raisin cookies to celebrate moving out of the dorm and into our first apartment. We had no furniture, so I laid down where the dining table should have been and we measured. It's possible we weren't entirely accurate. Or I may have shrunk since 1990.

For a while my license said I was 5'5", and after I added a couple inches a cop once looked at the ID and then down at me in my scooter and declared there was no way I was as much as 5'7". I've always overestimated my weight too. Sometimes people don't want to see the truth.

2. I was so painfully shy as a child that even though Laverne & Shirley was one of my favorite tv shows, I'd often have to leave the room when their escapades led to public spectacle and embarrassment that I could not bear to witness. It's like getting tickled: There's the joy of being unabashedly alive, but it also makes me anxious and need to pee.

3. As a child, I took ten years of classical training in piano. I also played the guitar, the viola, and was part of the percussion team in the grade school and junior high bands. All of that was over by the time I was 16 and my manual dexterity began to go. But the piano lessons have left me with a natural affinity for any music with some good piano riffs in it.

4. Ten minutes. I need a minimum of ten minutes after I first get out of bed with no one talking to me or messing with me in any way. Once I get that, it'll likely be a very fine day, but if I don't get that, all bets are off.

5. Guacamole is the soupy-green nectar of the gods.

6. Either that or margaritas are. Rocks and salt.

7. The absolute best thing I did for myself last year was to splurge on two art prints that are now framed and in my bedroom. I had no idea how much joy they would bring me each day, how much color and creativity they'd let into my life. I'm still working on what I can do this year to equal that.

8. My twin sister and I have a very juvenile response to bra-shopping. We gather our choices, go into the giant accessible dressing room, then giggle ourselves sick with the visuals each option presents. You'd think we'd have outgrown this at age 38, but no. And what's really silly is that I no longer actually wear bras.

9. I'm a sucker for any story -- book or film -- that messes with the space/time continuum. And post-apocalyptic fiction. Combine the two and I'm stunned into geeky bliss.

Will you play?

I tag Steve and/or Connie, Laura, Dawn, Elizabeth, Trinity, Wheelchair Dancer, Frog and Amanda.

3 perks to using a ventilator

Yes, perks.

1. Sleeping with your head under the covers while still getting very fresh air.

2. No histamine buzz in the nose from allergies since inhaling doesn't happen up there.

3. And one I learned today: Sometimes, when the vent alarm sounds, a male cardinal sitting outside at the nearby birdbath will cock his head and answer back. "Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp!"

Wiki frenzy

There are several new wikis focusing on disability information that have popped up recently. Like with all wikis, they're a work in progress open to anyone who wishes to contribute. Here are the links:

Disapedia
Wikibility Rights
Civil Rights WikiSpace, with dis info here and here