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Scottie Thomaston, the beloved blogger formerly known as indiemcemopants, is the most amazing young man I've ever met. He was born in 1984 in rural Alabama, born with hydrocephalus and spina bifida, yet he survived both and even learned to walk. When Scottie was fifteen he underwent a thirteen hour surgery for rapidly advancing scoliosis - and survived that just fine. The surgeon went back in a few days later to put in a piece of hardware, and left Scottie paralyzed. [You can read the entire harrowing story here.]

So there he was, fifteen years old, suddenly in a wheelchair, and headed for rehab. At about the same time he inadvertently came out to his family through a letter-writing mishap and  was met with horror and rejection and attempts to "pray the gay away". He was told in no uncertain terms that "it" would not be "allowed" in his parents' home. Now, imagine yourself in Scottie's position. Imagine what that must have felt like. Fifteen-year-olds are all about body image and sexuality, right? How does a young man deal with loss of mobility, family rejection, and the complications of dating while in a wheelchair? Can you imagine how lonely and rejected and trapped he must have felt?

When I met Scottie a few years ago he was disabled, unemployed, depressed, isolated, and living alone in a small low-income apartment. He had no local friends, little positive contact with his family, and forget about a social life. But he had one tiny tiny thing going for him: Scottie is freaking brilliant. Combine a huge intellect with a gift for writing, a passion for justice, and unending curiosity - not to mention a great sense of humor and an ability to listen- and you've got something damn special.

He's also got courage. When Scottie and I won scholarships to NN10 in Las Vegas from Democracy for America, just getting there presented unique problems for him. How would he get from his tiny town in Alabama to a city with an airport? How would he manage a large suitcase? What should he do at the airport? With TSA? Scottie had never flown before that trip, so he didn't even have memories of healthy flying to fall back on. And yet - and yet. When I arrived at the airport in Las Vegas, there he was.

Courage.

Did I mention Scottie stutters? The thought of engaging with people at Netroots Nation gave him anxiety attacks and nightmares, but it didn't keep him away.

Courage.

He turned around and went back the next year, too.

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There I was about 9 PM last night, lounging on the couch, eating cheddar popcorn and Ranier cherries while I watched the Olympics. I was nice and cosy in my mountain retreat, using more than my fair share of electricity as the dishwasher cycled, lamps glowed upstairs and down, and the computer remained fired up and ready for me when I finished my snack.

Just like that [finger snap] the world was plunged into darkness and silence, save the sight and sound of lightning and thunder. I stood up in the inky blackness and sensed - fortunately - my two cats coming to shelter by my legs. I was only steps away from the gas fireplace, so I turned it on while I found candles and matches, then turned it back off.

Now what? What the hell did people do before electricity? Is that how all those large families came to be? I killed twenty minutes trying to remember which lamps and ceiling fans were on and at what settings, checking the locks on the doors, tripping over the cats, opening the dishwasher, fumbling my way up the stairs, tripping over the cats, spilling wax on my hand, and cursing TV's that require electricity to be turned off.

I repeated my "game" with the lamps and ceiling fans upstairs, once again tripped over a cat (the other learned his lesson), flossed my teeth in the dark, prepared for bed, and watched the wild storm for two hours while I waited to get sleepy.

Kossacks are the smartest people I know, so I thought I'd ask your advice: what else could I have done? If you had to spend several hours with no electricity and a few candles, what could you do with yourself? Besides that?

PS - Hurry! It's thundering again!

Discuss

SATURDAY, JUNE 23, 2012

Yet another blazing hot June day in a month of record high temperatures and drought. Early in the afternoon I stepped out on the deck after seeing a crawl on the TV saying there was a fire in Waldo Canyon. What met my gaze as I looked to the northeast was a huge growing plume of black smoke, shaped much like a mushroom cloud, moving closer and closer.

The telephone rang. The caller ID said “Reverse 911”. A voluntary evacuation order had been issued for Cascade, Chipita Park, and Green Mountain Falls, three lovely, contiguous, old communities strung like jewels along Ute Pass. My piece of paradise.

For a few minutes, all my carefully laid mental action plans fled my brain as the first surge of adrenaline hit. “Where will I go? Where will I stay? What should I take? How will I load the car with my back?” Then sanity returned, and I began to pack with one eye on the plume of smoke and both ears listening to the TV. (That's not entirely true. I stopped long enough to post a comment in J Town at 2 PM.)

We were told to be prepared for a 72 hour evacuation at most. (Who thinks these things up?) My first thought was for my two pooties, so I gathered up carriers, pootie pads, their heated bed (don't ask), medicine, cat litter, litter pan, dry food, gushy food, Gerber's, and vet records.

My records were next: medical records, financial records, tax records, will, power of attorney, durable power of attorney for health care, birth certificates, a pile of unpaid bills, checkbooks, phone directory, stamps … all that and more got dumped into an expandable file with sturdy handles.

I went into the bathroom. I'm a disabled old fart, so I have a small fortune in medications, supplements, first aid supplies, lotions, potions, salves, and miscellaneous shit. I took the meds and the things that would be most expensive or difficult to replace.

I packed personal care and hygiene items. Again, I grabbed some things I wouldn't need but couldn't replace easily, like a small fortune in cosmetics and a few pieces of jewelry.

I took a laundry basket into the bedroom and filled it with underwear, t-shirts, scrub pants, one sweater, my community quilt, and a loaded pistol. (I thought I might end up sleeping in my car at some point.) With that thought, I topped off the laundry basket with a pillow.

All this and a supply of water and snacks got dumped by the front door. While I was scampering around I was listening to the TV and deciding where I should go, i.e., up the pass or down the pass? I could go down the pass to Colorado Springs, a much longer drive and one that would take me right past the parking area for Waldo Canyon. I didn't have a place to stay there and I knew prevailing winds would keep most of the smoke pushed into the Springs. My other choice was to go up the pass a few miles to Woodland Park, the little town I shop in. I knew from the TV chatter that a Red Cross shelter was being opened at the high school, so at least I'd have access to food and medical attention, even though I heard they wouldn't take pets. Woodland Park it would be, then. All I needed was a motel room.

Suddenly, the winds shifted and the plume of death stopped moving this way. I could take a moment or two and think. A few neighbors were packing up and leaving right away, but I have “issues”, as they say. Packing up my car meant multiple trips up and down a flight of uneven outside stairs carrying heavy loads with a back so unstable and painful that I'll be having surgery later this year. I could do it in half an hour, if necessary, but I thought I'd wait and see. There's a fire in Waldo Canyon at least once a year, and the firefighters always seem to put it out in short order, so I sat on my deck and watched and listened.

As darkness came, so did hope. Wildfires almost always “lay down” at night. I felt sure I could sleep in my own bed and, with a little bit of luck, never have to evacuate.

SUNDAY, JUNE 24, 2012

It turns out this fire never read the book on proper fire behavior. I awoke at dawn, turned on the TV, and discovered to my horror that Manitou Springs was evacuated at 1:30 AM. A door-to-door, “grab your keys and haul your ass, ma'am” kind of evacuation.

I put a few things in the car.

At 6:53 AM my mandatory evacuation call came. Right on its heels came a call from my son in Texas. “Mom! What can I do?” “Get on the internet and find me a motel room in Woodland Park, one that will take Jim Bob and Tommy.” I made a few more trips down to the car.

“Mom, you've got a room for two nights at the Woodland Country Lodge. Here's the address and phone number. The only thing is, you won't be able to check in until 2 or 3.”

Eight hours until check-in? Yikes! Plan: load the car except for the pooties, purse and nurse. Piddle around at home for as long as humanly possible. Run the sprinkler, drown the house plants, finish the coffee, lock up the windows, do a mental review of what's packed, what might be lost forever. Pray for rain (Ha!) and favorable winds. I got neither, and at 7:45 I posted in J Town, “I'm bugging out – gotta go.” I jerked eight cords out of the back of my PC and put it in the car, took one last tour of my home, loaded up, and headed up the pass.

With hours to kill and cats yelling from the back seat, my first stop was the Red Cross shelter to check in. I already knew they weren't doing a damn thing for people who can't or won't be separated from their pets, but I decided to give them some crap about it:

“During Katrina, I saw an old man drown when one of your shelters turned him away because he wouldn't give up his dog. He swam back into the flood waters, went under, and never came back up. I thought the law changed after that, that you folks have grown a heart. Why am I wrong?”

The Red Cross volunteer said, “Well, we now have to take service animals. But we can't do what you're asking, because some people are allergic to animals. If a kid got scratched by a cat or a dog bit someone, we'd get sued.”

I drove around Woodland Park for five endless hours. It was too hot to stop and turn the car off with animals in it. I went to the hotel and gave them my cell phone number, asking that they call me the minute my room was available. That worked for about ninety minutes before cell service stopped working, so I'd drive for a while, go to the hotel and check, drive some more. I have a dumbphone as there's no signal in my neighborhood, so I was completely off the grid for those hot hours. Finally, finally, I was able to check in, unload the car, carry everything up to the second floor, and let poor Jim Bob and Tommy out of their carriers.

At 8 PM Manitou Springs residents were allowed to go home. “Yippee!” I thought. “We're next!”

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As we sit here fearing the worst from the Supreme Court's upcoming decision about the Affordable Care Act, I'd like to share a possible way Kossacks having (or facing) unbearable medical bills can get help. We do as much as we can with our own Community Fundraisers, but there are other avenues one can explore.

Crowdfunding uses the internet and social media like facebook and twitter to raise funds for start-up businesses, to save a home from foreclosure, to meet adoption expenses ... almost any project you can imagine.

How does it work? It's simple, really. You should write a compelling story, state your fundraising goal, and pick a site. Here are three that have been successful in covering medical expenses:

GiveForward. com

GoFundMe.com

FundBunch.com

When you tell your story, ask readers to contribute and/or to pass the information along on their social networks, much like we ask Kossacks to rec fundraising diaries so more people will see them. According to GiveForward, an estimated 20% of donations on their site come from friends of friends, people who don't actually know the patient/recipient.

If any of you have used crowdfunding successfully, please tell your story in a comment. If you know of other, perhaps better, sites, tell me that in a comment and I'll add the link to the diary.

Sorry for the short diary, but this needs circulation. I hope the information helps someone. ♥

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David Hume wrote the background diary about this situation earlier today, but it didn't get a lot of attention.

HERE'S WHAT THE PETITION SAYS:

My daughter Maya is four years old and has a developmental disability that leaves her unable to speak. A few months ago, she began using an iPad app called Speak for Yourself (SfY) to communicate, and since then Maya’s progress has been staggering. She politely makes requests, tapping out “I want cookie please.” She makes jokes, like looking out the window at the bright sunshine and tapping “today rain” and laughing (what can I say, 4 year olds don’t tell the best jokes). And a few days ago she looked at my husband as he walked by and tapped “Daddy, I love you.” Life-changing. Seriously. Thanks to Speak for Yourself, Maya can speak to us, clearly, for the first time in her life. SfY has given this hope to families just like ours all over the country.

But now Maya is poised to become a very real, very human, and very adorable casualty of patent law. The creators of SfY were being sued for patent infringement by Prentke Romich Company (PRC) and Semantic Compaction Systems (SCS), two much larger companies that make designated communication devices (not iPad apps). In response to complaints from PRC and SCS, Apple removed Speak for Yourself from the iTunes Store. It disappeared. It no longer exists. Gone. So now what will happen to Maya’s voice, and the voices of all the others who rely on SfY?

Apple, PRC and SCS should return Speak for Yourself to the App Store immediately, and it should remain there throughout litigation. And PRC and SCS should guarantee that Speak for Yourself's availability to families like mine will not be jeopardized no matter the result of the lawsuit.

At the moment, we still have the app. But we are now shadowed by a huge, impending threat. With the removal of Speak for Yourself from the iTunes store, the SfY team has lost the ability to send out updates or repairs to the people who are currently using the app. At this point, an update from Apple to the iPad's operating system could render SfY useless. Our app could stop working, and Maya would be left unable to speak, and no one would be able to help us.

I don’t understand why Apple decided to remove the app. No court had ordered the removal of the app from the iTunes store. This app is not a game, it’s a necessary, irreplaceable voice for people with disabilities. Why would Apple decide to pull it so arbitrarily?

I also don’t understand how Prentke Romich could think that this was a reasonable or ethical move to make. PRC is a 46 year old company whose entire client population is comprised of children and adults who are unable to speak. Their motto is “We Believe Everyone Deserves A Voice.” How can they reconcile their mission statement with their strategic removal of Speak for Yourself from the market, effectively blocking access to new nonverbal users and potentially causing the app to become inaccessible to the current users who are using it as their only voice?

My daughter cannot speak without this app. She cannot ask us questions. She cannot tell us that she’s tired, or that she wants yogurt for lunch. She cannot tell her daddy that she loves him. No one should have the power to take this away from her.

PRC’s decision to fight for the removal of this app from the iTunes store isn’t just an aggressive move against Speak for Yourself, it’s an attack on my child, the other children using this app, and the children who are ready to begin using this app but now cannot. Please help me tell Apple, PRC, and SCS to ensure that Speak for Yourself remains available in the iTunes Store no matter the outcome of their patent dispute.

PLEASE SIGN THE PETITION!
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UPDATE: WE'RE THERE! ALL DONE!!!!!

Got your attention? Ha! It's not the pants that bring me here today, although a new used pair would help. FrugalGranny is one of those Kossacks who is always around when someone else needs help. She and her hubby are the real deal - great people who found each other later in life and have nested happily in their little apartment in San Francisco, despite having to survive endless months of unemployment.

I first bonded with FrugalGranny when their cherished Burmese, the Boober, was fighting cancer, and I cheered them on when they joined GUS and gave up smoking together. I worried about them during the long months of unemployment, and rejoiced when Mr. FG got a job. When I learned that FG's husband is risking life and limb just to get to work every day, I knew we had to help. These words really got to me:

I had to wait half my life to find my husband and I don't want to lose him to something as stupid as bald tires.
Trouble never travels alone, it seems, and those bald tires were soon joined by dental problems and, yes, the end of her last pair of pants. Here, I'll let FrugalGranny tell you herself over the fold.
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Oh hai! You guys rallied round peregrine kate and saw that she won a scholarship to Netroots Nation in Providence, RI next month. Good job! Our Kate is the founder of the essential group Monday Night Cancer Club; here's what Sara R has said about Kate:

I "met" peregrine kate by email shortly before my gallbladder surgery last year.  Peregrine kate was about to have a bigger surgery herself -- a hysterectomy to fight a cancer that threatened her life.  We became DKos friends.  And in spite of the threat to her life, I saw a vitality in her that would not give up but instead reached out to help others.  What resulted was the Monday Night Cancer Club, a group here on DKos for people whose lives have been touched by cancer. peregrine kate is a woman who, when faced with the scariest of illnesses, looked it straight in the face and put out her hand to help others who are facing it, too. Because of her, Kossacks who have cancer come into their lives need not feel alone.  She represents the best and most courageous of our blogging community.
Scholarships are lovely - I know, I've been a DFA beneficiary - but they don't cover the cost of travel and meals. If your entire family income (and then some) is paying your medical bills, as in Kate's case, taking advantage of a scholarship may be almost impossible.

We asked Kate how much money she needs to attend NN12:

I estimate that my travel and food costs will be about $600: $450 for airfare, $20 for Amtrak from Boston, and then about $30/day for food.
Think we can do it, my friends? Can we get our Kate to Providence and back? Jump below the squiggle for the particulars.
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We're moving! Please read and rec FrugalGranny's new diary for homogenius!

We all encounter a lot of different people here at Daily Kos. Sometimes those encounters end up having a profound impact on our lives – and homogenius had that kind of impact on my life. More to the point, he had an idea that has had a major impact on the disabled members of this community, along with their families and loved ones. Down at the bottom of the Front Page, in the Table of Contents, is a list of five Featured Groups.

KosAbility is one of those five groups.

KosAbility was HomoGee's idea.

Now this funny, caring, wise man finds himself caught up in a whirlwind of poverty, care-taking, unemployment, disabilities, and approaching homelessness. I'll let him give you the overview after the squiggle....

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If you live in one of the sixteen states (and D.C.) that have legalized the use of medical marijuana, or if you live in one of the twelve states where similar legislation is pending, you may be wondering how such laws work. My state (Colorado) came to legalize medical marijuana by way of a ballot amendment approved by 54% of the voters on November 7, 2000, and the new law went into effect on  June 1, 2001. In the almost eleven years since, my knowledge of medical marijuana - how to get it, how to use it, what it's good for - never expanded much. I heard about dispensaries being robbed, and federally-mandated tweaks to keep dispensaries a certain distance from schools, but that's about it.

Sidebar: There was a huge outcry in Colorado Springs in the beginning, which is what you'd expect from the reddest county in the state and home of several fundamentalist mega-churches. When voters passed the law in 2000 it was, "OMG! OMG! The sky is falling!" When dispensaries began opening in 2001 it was, "OMG! OMG! We're all gonna die!" But then the mmj-based tax revenues began to flow in. "OMG! OM - oh, shiny!" Tax revenues have increased exponentially ever since, and what do you hear now? [Crickets]

As I developed problems with medications over the past year, I began to wonder about medical marijuana - would it help me? How could I find out?

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Sat Apr 14, 2012 at 07:25 PM PDT

Nurse Kelley Sez: RIP, moe99

by KelleyRN2

Another Kossack has passed away, moe99. Her children posted the following on her blog this morning:

Our brave, beautiful mother passed quietly in to her next adventure early this morning while surrounded by her loving family. She was sleeping comfortably, and was not in any pain. We are in awe of her fighting spirit, her courage, and the greatness of her love. One of her final requests was for everyone to know that she considered her friends to be her greatest riches, and that she considered herself wealthy beyond compare. We love her, and miss her deeply. Thank you so much for all of your kind words, love, and support during this difficult time. She was truly an amazing and inspiring woman, and our world was a better place for knowing her.
moe99's blog

I don't think I ever encountered moe99 here, but I've learned a few things about her in a very short time. She was an attorney, a mother, an early recipient of a Community Quilt when she was diagnosed with lung cancer, and a resident of the Pacific Northwest. Please, join me in extending your condolences to her children, and share your memories of a Kossack gone too soon.

Below the fold I'll copy moe99's thank you diary when she received her quilt, along with the names of those who signed it.

Moe99's final comment, dated 12/01/2011 acknowledged her impending death:

I was diagnosed with non small cell lung cancer stage III B in 2009.  The disease has progressed and I am now after 5th line chemotherapy, without any medical options.  
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It is with a broken heart that I bring you this news today. I just received a kosmail from Julie Waters' beloved partner MoonWomyn saying this:

I hate to drop it on you this way but I'm hoping you can let the Kos community know that Julie passed away this afternoon.  It was very sudden and completely unexpected.  She had been doing really well and looking forward to doing even better.  This disease sucks.  She sneezed which led to aspiration, some vomiting, more aspiration, then cardiac arrest.  Her heart stopped 3 times.  She was airlifted to a local trauma center and they worked like hell to help her but her lungs were unable to come back.  
Prior to January, 2011, Julie posted under the name juliewolf beginning in 2005.

Please join me in extending our condolences to MoonWomyn and sharing our grief at this terrible loss.

UPDATE: Horace Boothroyd has posted a memorial diary for Julie Waters.

Also, Julie was a newspaperwoman, if you'll forgive my use of that dated term. You can see a lovely obituary in the Green Mountain Daily.

Discuss

Sun Apr 01, 2012 at 02:12 PM PDT

KosAbility: Open Thread

by KelleyRN2

THIS DIARY IS CLOSED. TODAY'S KOSABILITY DIARY IS HERE!

Whoops! Sorry to be late, y'all; our scheduled diarist is MIA, despite confirming with me yesterday. I was looking forward to her story, so I'll take this down if she shows up late.

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I'll post the upcoming schedules below the squigglediddle, then leave the floor open to questions and comments.
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