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KosAbility is a community diary series posted at 5 PM ET every Sunday 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 wrote the kick-off diary for this group three years ago next month, and I have been the Sunday moderator almost every week since.  

Many of us old-timers who considered KosAbility to be a labor of  love have moved on. CJ (ulookarmless) passed away. Father John-Mark (jgilhousen) has a new ministry. Scottie Thomaston (formerly indiemcemopants) has a full-time job. Homogenius has a job and a busy life. Peter (plf515) is still an occasional contributor and remains my rock, but his business is growing. Me? I'm tired. Three years is a long time to give up every Sunday afternoon.

We've done great work with this group. Before KosAbility, you didn't see people getting donuts for comments like “retard” or “take your meds”. We earned a deserved place on the Daily Kos masthead, one of only five groups named as “Featured Groups”.  Almost 1200 diaries bear the KosAbility tag, and most of our scheduled diaries have been on the site's Recommended List. A lot to be proud of; a great tradition for someone to carry forward.

That someone is my friend postmodernista. I was about to post a diary last week looking for a volunteer when Jill called me out of the blue and, when I told her what I was doing, she offered to take my place. It was as if the universe were handing me a gift! We're both here today, me to say goodbye and Jill to say hello to those who don't know her. I'll let her have the space below the squiggle to introduce herself.

I want to thank everyone in the community for helping make KosAbility such a success - our writers, our commenters, our moderators, and our board. You guys are the best of the best. ♥

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I just received a kosmail from the oldest daughter of beloved Kossack racheltracks, asking me to inform her friends and admirers here that she is on life support. Please go to the linked profile page and, if you are an editor or admin of any of the groups listed, republish this to your group.

Whoever or whatever you believe in, please send your prayers, good intentions, and/or healing energy to this wonderful lady.

Here's what we know so far:

Hi Nurse Kelley.

This is Rachel's oldest daughter, [name redacted]. I need to ask a huge favor of you. My mom is in ICU on a ventilator fighting for her life. I can't cope with things right now so I was wondering if you would ask people in the groups that you know she's in to please send as many prayers to heaven as they can. I am too upset to go into a lot of detail but my mom had knee replacement surgery on Dec. 19th. Ten days later she was back on the table due to a suspected blood clot or possible infection. No infection shows up and no blood clot either. Three days later she is back home with me and the swelling, pain, redness and heat are getting worse by the day. Last night we go back to the ER because her whole body was blowing up. She gained 30 pounds in 21 days and she was not even eating much at all. I had to come home to my kids last night so her best friend came up there to stay with her. They both told the nurse that it was way past time for her night time dose of heart medicine. The nurse never brought it to her. As the night progressed her lungs and heart sack started filling with fluid and she could no longer breath on her own. Her BP spiked and her chest started hurting. At that point they put her on life support. I know that my mom has made many friends here that she cares for very deeply. That is why I am asking for your help. I am so emotional right now that I can't remember her password and I don't know which groups she belongs to. Anything you could do would be deeply appreciated. If you need to reach me my number is XXX-XXX-XXXX. Thank you and God bless,

Rachel, if by some chance you get to see this - or someone reads it to you - please know that I love you. The candles are lit, I'm sending all the healing energy I have from Pikes Peak, and I beg you to fight. Live, Sweetie, live!
Discuss

It's that time of year: hospital admissions are escalating dramatically as people come down with the flu and, if they're disabled or elderly, develop life-threatening complications like pneumonia. I wrote a diary almost three years ago about the nursing shortage and it's the second most requested link I'm asked for. Today I've pulled out the parts about keeping yourself and your loved ones as safe as possible while hospitalized.

KosAbility is a community diary series posted at 5 PM ET every Sunday 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.
Don't expect Florence Nightingale when you or someone you love is hospitalized. While a precious few hospitals have managed to maintain high staffing levels, most have not. A friend of mine left the profession after one terrible shift when she had to choose between a patient who was hemorrhaging and a patient in respiratory failure. A nurse will assess you when you are admitted. You'll get your medications, hopefully the right ones, but seldom on time. It's a good idea to shower before you arrive because bathing is becoming a lost art in hospitals. If you are restricted to bed, good luck finding someone to bring you a bedpan. Don't count on your linens being changed with much regularity, either, and try not to touch anything you haven't disinfected yourself. In spite of the presence of superbugs in hospitals, housekeeping has been cut to the bone in many.

If you have an IV, monitor the site yourself and start raising hell if you see swelling or redness, or if it starts to leak or hurt. If you have a urinary catheter remember three things: The collection bag should never be allowed to touch the floor, it should never be raised higher than the level of your bladder, and it should be measured and emptied by someone every shift or when it gets full. If you have a wound from trauma or surgery, keep an eye on your dressings. Report obvious bleeding immediately. If you have a cast on an extremity, the fingers or toes should be watched for swelling, coldness and color change.

Don't let anyone touch you until you see them wash their hands. Don't let anyone use a non-invasive instrument on you -- stethoscope, blood pressure cuff, that kind of thing -- until you see them disinfect it. If your physician wears a necktie, ask him to tuck it into his shirt.

Create a "clean zone" around yourself, your bed, your bed table, your call button, and anything else you may touch, using the strongest disinfectant you can lay your hands on. NEVER let your bare feet touch the floor. Wear slippers when you get up and take them off before you swing your legs back into the bed. Whenever you touch any surface that you haven't personally disinfected -- doors, anything in the bathroom -- wash your hands. Nosocomial (hospital acquired) infection should be your greatest fear, and there's a lot you can do to protect yourself. Make your family and visitors take the same precautions. I don't care if you're a shrinking violet in every other aspect of your life, be assertive while you're a patient. Get madder than a pet monkey if you have to. Your life may depend on it.

Another area that requires vigilance is medications. I know you wouldn't be in the hospital if you were at your best, but please, please try to monitor your medications. There are times when mistakes are more likely to occur. When you're admitted, all your meds are entered into the hospital's pharmacy software. Transcription errors occur. When you're transferred between services, say from the ICU to a floor, misunderstandings about what you've already been given and what you need to be given can lead to over- and under-dosages. All orders are suspended when you have surgery and must be re-entered, with appropriate changes, afterwards. Finally, any change in medications can lead to an error: your doctor decides to switch your antibiotic or try another painkiller, and someone has to look at the last dose of the terminated drug when scheduling the beginning dose of the new drug. It gets complicated.

I know nursing from both sides of the bed. I've had eleven surgeries in the past eleven years, and I've seen both the true heart of nursing and its dark, understaffed side. The one thing I know for sure is I will never enter a hospital alone. Someone is always with me, even at night, asking questions and keeping watch. When someone I love is hospitalized, I'm there with them. Keeping watch.

I made my son read this advice before my spinal fusion in August. He probably thought I was overstating my case - until he started seeing the hospital world through my eyes. He saw how long it took to answer alarms and call bells, he saw a physical therapist set my catheter bag on the floor by the bed, he saw the medication problems, and he saw how hard I worked to meet my goals: stay out of ICU, and get discharged in three days. He saw how rarely and how poorly the rooms were cleaned and disinfected. He noted that I was given one quick partial sponge bath throughout my stay. More than anything, I think he sensed my fear and my desperation to get out of there.

Discuss

There is a diary on the Recent list that should be read by everyone. It should be reprinted in the New York Times and reposted on every progressive blog on the internets. If you have children, read it to them as one of the best holiday presents they'll ever get.

Send it to your congresscritters.

Most importantly, read it as a gift to yourself.

Diary of the year.

Discuss

For forty-eight hours and more I've watched diary after diary stream by, some thoughtful, some ranting, most* about the need for better gun control. No one in their right mind would argue that reinstating the ban on assault weapons and banning certain types of ammunition and mandating background checks at gun shows are not steps in the right direction. This diary isn't about gun control. It's about the severe lack of mental health services in this country of ours.

This diary is also not about autism. Autistic kids are NOT inherently more violent than the rest of us. If you disagree, please go write your own diary about it.

KosAbility is a community diary series posted at 5 PM ET every Sunday 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.
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This community is one of the great blessings of my life. You guys raise money for so many worthy causes that I consider it an honor to be called a Kossack. Community Fundraisers was established just ten months ago, but take a look at what you've accomplished, beginning with emergency surgery for Noddy's little Itzl. It seems like you're always there when the call goes out.

Most people will never need a community fundraiser. The rest of us will hopefully be placed in extraordinary circumstances only once in our lives. There is, however, a small subset of Kossacks who live on the razor's edge of poverty. They are mostly women, often disabled and/or elderly, all living on less than $1,000 per month. $1,000! Two of these women I know are living on less than $800 per month, yet they've found a way to make every penny squeak while they continue to stay involved with their communities, both real and online. You have helped many of them when asked, and I thank you for that. (What's that water on my keyboard? Oh, it's just tears. Never mind.) For that little group of Kossacks, crisis is more than a once-in-a-lifetime thing.

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I have little to add to the press release from Kirsten Gillibrand's office, save this:

PRESS RELEASE FROM SEN. GILLIBRAND'S OFFICE

Gillibrand Amendment in 2013 Defense Bill Lifts Restrictions on Treatment for Tens of Thousands of Military Children Suffering from Autism and other disabilities
November 29, 2012

Washington, DC – U.S. Senator Kirsten Gillibrand, a member of the Senate Armed Services Committee, today announced that the Senate voted for her amendment that would cover behavioral treatment for military children with autism spectrum disorders and other disabilities. Based on the USA Heroes Act that Senator Gillibrand authored and introduced in 2009, this bipartisan amendment under the 2013 National Defense Authorization Act (NDAA) bill would help reduce the burden of military families and their children living with autism and other disabilities by requiring the military health insurance program to lift restrictions on behavioral care and expand proven treatment by meeting the national recommended standards.

“It is alarming that our military families who have sacrificed so much are denied essential services for their children suffering from autism and other disabilities,” said Senator Gillibrand. “This amendment will help ensure that our military families have access to the critical services, care and support they desperately need and deserve.”

Autism is the fastest growing developmental disability in the country, with over 23,000 TRICARE beneficiaries diagnosed with autism, and another 10,000 families are estimated to have a dependent with a developmental disability. Nationwide, this disease affects 1 in 88 children and 1 in 54 boys, according to the Centers for Disease Control.

The current military health insurance program (TRICARE) does not cover applied behavior analysis (ABA), a treatment recommended for autistic disorders, leaving retirees and reservists and their families without care. Under the Extended Care Health Option (ECHO), available only to active duty personnel, ABA therapy is covered, but capped at $36,000 a year or an estimated 6 to 11 hours of therapy a week – a fraction of the care medically recommended to improve the life of a child suffering from autism.

As a result, tens of thousands of military families impacted by this disease suffer emotional and financial strain and are forced to choose between paying out-of-pocket or forgoing therapy altogether. Forced to rely solely on other coverage, families find themselves at the end of a long line waiting list for a specialist each time they relocate.

To ensure that military families have the care they need, Senator Gillibrand’s amendment would require TRICARE to meet the minimum threshold of basic care, cover behavioral treatment for developmental disabilities, including autism, modeled after national standards, and lift the financial cap on care. More than 30 states already have laws in place that require private insurers to cover ABA as a medically necessary health service and starting next year, federal civilian employees may see ABA-inclusive health benefits.

The amendment is co-sponsored by Senators Joe Lieberman (I-CT), Scott Brown (R-MA), John Kerry (D-MA), Richard Blumenthal (D-CT), Mark Begich (D-AK), Bob Menendez (D-NJ). Bernard Sanders (I-VT), Daniel Akaka (D-HI), Barbara Mikulski (D-MD), Patrick Leahy (D-VT), Sherrod Brown (D-OH), Saxby Chambliss (R-GA), and Marco Rubio (R-FL).

Today’s Senate vote ensures that Gillibrand’s legislation is included as an amendment to the NDAA, which is being debated on the Senate floor this week.

SOURCE
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FloridaSNMOM has a diary up right now - LINK HERE - about having their electricity cut off today. This is a household that HAS to have power! She said, in a private message:

I hate to ask, but we're really going to be screwed here. I can't live without the electric. I won't be able to breathe, and I won't have the CPAP machine or the nebulizer. The electric company is saying call 211, but at 6pm on a Friday, that's useless if they're planning on turning us off before Monday.
DO NOT REC MY DIARY. PLEASE FOLLOW THE LINK AND HELP THIS FAMILY!

UPDATE: Jeff Lieber paid the bill so this family won't go without power over the weekend. (Things like that always make me cry.) We need to pay Jeff back and buy this family a little cushion.

Discuss

Perhaps you heard about the precious ten-year-old who was abducted from a Colorado neighborhood as she walked to school on Friday, October 5.  One week later - two days ago - remains found in a nearby park were positively identified as those of Jessica Ridgeway.

Perhaps you heard the Amber Alert, or followed the story on the morning shows while you drank your coffee and got your kids off to school. Maybe you hugged them a little tighter before they left.

One thing you don't know is that two of Jessica's great-aunts are Kossacks. Like many of you they have to maintain a firewall between their blogging identities and their real names because of their jobs, but I know the family and I can tell you they are mothers and daughters and aunties and friends and progressive activists.

When I first met one of these Kossacks for lunch a few years ago, she told me that she doesn't have a lot of close friends because her family is extremely close. There are three sisters and they socialize together, talk to one another throughout each day, and have raised their children together.

They're good people. I wrote about my flowers dying when I was evacuated for the Waldo Canyon Fire this summer; I said it was silly, but when I threw the containers in the garbage can I sat down in the driveway and cried.

Shortly after I wrote that, my sister friend pulled into my driveway with the back of her minivan full of flowers. She hugged me, and then she spent a long time planting each one in just the right place. It makes me tear up all over again to remember that kindness.

This tragedy is just that - nothing, really, can help when an innocent life is taken so brutally, so unexpectedly, and so callously. Still, if you're so inclined, I know that Jessica's mother is struggling both financially and emotionally, and tragedies compound themselves by creating unforeseen expenses. Volunteers in Westminster have put together a website - JessicaRidgeway.com - where you can leave your condolences and/or make a PayPal donation to help this young mother.

Godspeed, Jessica.

Discuss

This community first came to know CJ Campbell - ulookarmless - in 2008. By then he was almost 64 years old, had lost an arm to cancer, and was suffering from aphasia, heart disease, epilepsy, and poverty. We followed his journey as he underwent chemotherapy, a heart attack, and more kinds of cancer. What many of you don't know is that he wrote poetry and painted daily, cooked at a near-professional level, devoured newspapers from around the world, was a gifted musician, fathered five children by three wives on three continents, helped change the course of Australian politics in 1972, made and lost a couple of fortunes, had some astonishing adventures, never met a stranger, played golf, and – at the end of his life, with one arm, a pacemaker, the aftereffects of a stroke, and three kinds of cancer – coached soccer.

As CJ and I became friends, I asked him questions about his life. Here, in his own words, is his story.

Och, ma family is Scots. My father is Donald Cameron Campbell and our traditional family toast is "Here's lookin' up yer kilts and takin' doon yer particulars."

On my mother's side, we are Scandinavian from waaaay back. Our original ancestor was a mercenary on the Second British fleet that brought convicts to Australia in 1792. As a result, we are rare 7th and 8th generation Australian-born natives with no convictions in our backgrounds. My mum Julia's maiden name is Leth (Leith) and she claims she traces her heritage back to the vikings.

Now, somewhere along the line, my great-grandmother fell in love with an aboriginal stockman (cowboy), so, I am 1/16 Australian aborigine.

People often say to me, boy you have led a great life, and I say back, "No, I simply remember what has happened in my life". When I get people to begin to dredge up the incidents that have made them who they are, they suddenly begin to see their own journey in a different light.

Every journey is different, every journey worthwhile.

My grandmother-in-law (in Hong Kong) was about 4'9", had bound feet, weighed no more than 80 pounds and was an opium addict from the 1920's. She lived into her late 90's, died in 1975. Imagine the life she lived and the things she saw!!

I come from a working class background. My dad was a fitter and turner (a metal worker), he built the furniture in our house. My mom was very intelligent and was always frustrated by the lack of opportunity for women in Oz. Her dad was a well known artist and her mum, my nana, was a wonderful artists' model with all that implies.

I am the oldest of my generation and the first in the family to graduate from University. I had a job with the Feds and was slated to go into the diplomatic corps, was a regular church goer, married my teenage girlfriend when we both turned 22, had two sons. But then, in one of my last year of classes, met the manager of research at J. Walter Thompson, an older guy who was earning his degree courtesy of the ad agency. He offered me a job, which in turn led to a VP position at Spectrum within 2 years at age 24.

CJ's oldest friend (and new Kossack) Daigomi fills in here, giving some details on CJ's successful effort to change the Australian government:
During Col's tenure at Spectrum in Australia, they (the Spectrum team) developed the election campaign in 1972, "It's Time", which unseated a conservative coalition (Liberal Party and Country Party) government that had been in power for 23 years.
CJ's poem about this period in his life:
A WISER MAN

Life was never difficult for a white male born after

The second conflict to end all great international arguments

And while we never had much money in our pockets

We never wanted for material possessions
Nor did we lack for love from family and friends

Father had a steady job, protected by the union

Mother owned a coffee house, espresso in the 60's

Cheese and pineapple toast, berets, turtle necks.
Ferlinghetti read aloud to bongo drums

Me and Gordon and Rhonda played PPM tunes

My young brother Pete did Mick to a tee
Joined a group of radical left wing uni grads

In a market research group who worked for

The loyal opposition to the then government

In Oz. In the next twelve months we design,
Then run a successful campaign to try to elect
First Labour Party government in almost 20 years

On the simple premise that “It's Time”

That's correct, it was simply, time for a change.
Some would ask, “Time for what?”

Peter the Writer would always answer “It's just time”

The question would hang forever in the air...
A wise man was old Peter

Who understood that voters

Would finish the sentence

With their own ending
He was right
Three years later

Time was up

It was, indeed

Time
© CJ Campbell March 2012

I joined a group of like minded researchers and opened the Hong Kong branch of Spectrum. My wife came to HK for 6 weeks, did not like it at all and one night, when I got home, there was a note advising me that she had taken the boys and gone back to Oz and her boyfriend. I was devastated. S, who I had hired to run the new office, eventually became my wife and after almost 10 years in HK we came to LA in 1978. S is the mother of my third son and only daughter, both born here in America.

So then I was running a major research firm in LA when I met L. I was still young, still thinking below the shoulders in matters related to sex. I left S for a woman ten years younger. L had a daughter, who I now consider mine.

We moved to SF where I was working with a group researching market potential for energy efficient appliances.

Since my fourth son was born, his first 8 years coincided with the destruction of the Silicon Valley boom and I saw job after job disappear until cancer struck in 2004.

S, who has every reason to give me a hard time, married a good friend of mine from HK. She and he have both been solid as rocks.

My two younger brothers both live in Tasmania, I am in constant touch with them.

In my life I have:

-been the lead singer of a Peter Paul and Mary clone group in Oz

-lived with a tribe in the Oz desert for 4 months

-taken Polaroid pics of almost 200,000 tractors in SE Asia for
Caterpillar Tractor

-driven the length of Java from east to west

-spent a week with my wife on a deserted tropical island

-eaten Civet cat, harvest birds, snake, kangaroo tail, goanna,
witchetty grub, chocolate ants, fish heads and more

-abandoned the plane via the escape chute on the runway at Kai Tak Airport

-landed "dead stick" in a lettuce field in the Imperial Valley, Ca
holding on to the waist of my camera man as he kept the camera -going
outside the window of the Cessna

-developed the "bring to market" plan and helped sell the prototypes
to Maytag and Toshiba for the world's first microwave clothes dryer in
1999. The product is slated to come to market by 2015 it takes almost
twenty years for technology testing!

-wrote the original "bring to market" document for compact fluorescent
lamps in 1991 which predicted a 2004 "take off" year. I was wrong by
one year!

-been the lead singer of The Gang Bang, a HK rock group in the 70's
consisting of one Caucasian singer, a 5'1" Chinese lead guitarist, a
6' Chinese rhythm guitarist, a 5'5" 220lb Chinese bass player and a
tall skinny Chinese/Portuguese drummer who was stoned 105% of the
time. We had a permanent gig with Bacardi Rum on the Ferries where
they threw parties in HK Harbour

-conducted several million dollars worth of surveys for Reynolds
Tobacco and Coca-Cola in the 70's as they turned their attention to
Asian markets

-sat in a room with Reagan's advisors before his election when one of
them looked at him and said "You know Ron, when you made movies, we
always knew you were acting. Now you're a politician, we're not so
sure."

-at last count have been to 42 States

-I love to meet and learn about other people's journeys

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It is with a heavy heart that I must inform the community that CJ Campbell, who blogs here under the name ulookarmless, passed away this evening at Ventura County Medical Center. I just received the following email from his older son:

Hi Kelley. My father passed away tonight. He spent the day with [his daughter] and [his younger son] and was with me, [my fiance] and his friend [redacted] at the end. He was at peace and will be going to a better place now. Thank you for all your love and support. I will be in touch as arrangements are made.
There will, of course, be a proper memorial here at a later date. For now, I'd like to share with you a poem written for CJ by llbear:
Call you now on God your Father
from His High and Holy Station
to welcome home one brave warrior
who has done all he can
to instill honor in this nation.

The trail he traveled is littered with tears
and memories of an imperfect life
Which brought him wisdom he shared
With others looking for answers
While lost in personal strife.

This brave warrior redeemed himself
And at the end of his journey left behind
Legions of those enriched to know him
And honored to remember CJ forever as a Friend

Discuss

Our beloved poet laureate ulookarmless, known to most of us as CJ, is in that thin space between life and death where anything can happen. I was out this morning, and came home to find an email from one of CJ's sons:

I'm CJ's son [name redacted]. He has been in the hospital for the last few days with a rare infection similar to pneumonia. I'm sitting next to him and he asked me to reach out to you. We are not sure if he will make it through this hospitalization but he is fighting his hardest and his spirit is strong.
This is shocking news. In spite of all his health problems, CJ has been feeling better and, in fact, was about to resume moderating KosAbility on Wednesdays. In my reply to his son, I asked him to read CJ this message:
I love you, CJ. I don't want to lose you, but your son touched on that possibility, so know this: here or the other side, I will find you. I want whatever you want for yourself, my Darling. If you're too tired to go on, go with my blessing. If you want to stay, if your life is still fun and enjoyable, then fight with everything you have. I will hang on to your hand until you let go.
We all have different belief systems. Please, my friends, use whatever you believe in, be it prayer or healing energy or good thoughts, and send what you have to CJ. This diary is for him, so please address your comments to ulookarmless. ♥
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