Monday, September 24, 2007

Drugs and Profits

Profit is just one reason why it is time for national healthcare program. It is immoral to reap millions in profit from another person's health issues. That is not to say that I do not think doctors should make a good living; I believe they should. It takes a lot of dedication and commitment to science to become a doctor and I am not against rewarding that.

However, I also believe garbage haulers have done more to promote public health than have doctors. By removing our collectively generated waste and sticking it somewhere else, garbage haulers prevent disease, improve our life span, and create overall public health. I think they too should see receive compensation for the social good they do. The training is not long, but the health benefits are great.

Drug companies, on the other hand, are so greedy that even middle-income people cannot afford their prescriptions.

Drugs

It is difficult to figure out how much it costs to develop a new drug, mostly because the drug companies want to obscure that information. Not only do they receive billions of our tax dollars to subsidize their research, but they play shell games to hide their actual costs. Nevertheless, there are other ways to see how drug companies molest the public trust.

For example, take the generic drug, Diphenhydramine (Di-fen-high-dra-mean) Hydrochloride or Diphenhydramine Citrate. (Let's call it DH; much easier to say and spell). It has been around for years and very cheap to produce. All patents on the drug expired long ago.

At a dollar store, I can buy 100 generic DH for $1.25. I guarantee that the dollar store is not selling it at a loss. Sometimes stores do sell things below their wholesale costs to draw people into the store; so they buy other, costlier, items. DH is not one of those items in the flyers or ads.

DH sells under a variety of names, for a variety of ills, at much higher prices. For example, it sells as:

  • Benadryl is an anti-allergy anti-itch medication. A bottle of 100 sells for $15.00 at my local pharmacy.
  • DH is also the active ingredient in every over-the-counter sleeping pill.
  • Nytol (Block) $28.28/100 pills
  • Sominex $11.63/100
  • Unisom Nighttime Sleep Aid, $22.81/100
  • Simply Sleep, 11.97/100

Companies also blend DH with other medication to try to continue to rip off consumers.

  • Tylenol PM ($8.52/100) - Tylenol is a brand name of the drug, aceminophen (Ace-i-min-o-fen) Anyone can buy exactly the same drug as Tylenol generically for $1.00 for 100 pills. By taking two generic aceminophen and two DH, you have exactly the same drug effect as Tylenol PM. Aceeminophen is a pain reliever and fever reducer.
  • Advil PM ($14.03/100) - The generic name for Advil is ibuprofen (i-bu-pro-fen); you can buy generic Ibuprofen for $1.50/100 pills. Take it with two HD and you have exactly the same drug as Advil PM for a lot less money. Ibuprofen is a pain reliever and fever reducer.
  • Excedrin PM ($9.99/100 pills); Bayer PM ($14.47/100 pills), Alka-Seltzer PM (22.21/100 pills) are aspirin and Diphenhydramine Citrate. Generic aspirin is super cheap, 200 generic pills for about $1.00.

I could go on and on and... However, I do not want the point to get lost in a litany of hard to pronounce generic drug names.

Who Are These Guys?

The companies responsible for this are some of the most recognized companies who we know and trust through their advertising.

  • Pfizer manufacturers Benadryl and Unisom
  • Bristol-Myers Squibb makes Excedrin
  • Bayer produces Bayer and Alka-Seltzer PM
  • McNeil Products (a subsidiary of Johnson & Johnson) makes Tylenol PM
  • Wyeth manufactures Advil PM
  • SmithKline Beecham makes Sominex

The Point is Drug Manufacturers’ Insatiable Appetite for Profit

Even when a drug has been around for eons, drug companies are not happy unless they find a way to repackage and re-rip off consumers. There is no reason why generic drugs should cost that much. The drug company that invented a certain drug has recouped their research and development costs, gazillion times over. What about the other companies who didn't own the patent? They are riding the cash cow just as far as they can. And we let them.

It is obscene that people must choose between food and their medication. It is unconscionable that drug companies’ endless and unfettered greed determines whether people live or die.

A good national non-profit healthcare plan would make this medical catastrophe disappear with the stroke of a pen.

Tuesday, September 18, 2007

What to do when you're inconvenienced

My husband wrote a terrific piece about what to do when inconvenienced by a demonstration. You'll know why I think it's terrific, after you read it. :)

Saturday, September 15, 2007

March On, ADAPT

My husband and I are “the road less traveled” people, figuratively and literally.

Figuratively, we read books that rarely make it past a first printing; NY Times best seller list… piffle! We enjoy documentaries and independent films. If we go to the movie and there are more than 15 people in the theater, we know we picked the wrong movie (exempting Pixar and Harry Potter movies). Moreover, we love, get giddy-with-excitement about, political mass action.

Literally, our getaways are blue highway adventures.1 We can bore you for hours, nay days, with two-story outhouse tales. Let us tell you about the world’s largest sculpture of a walnut, the best road-side stand to get Indian Fry Bread (aka: manna from God) and a little mine museum run by a fella who wants to make sure the people who died in his town’s mining disaster aren’t forgotten. We stop at e-v-e-r-y historical marker. (I can hear my children groaning, as they are reminded of that memory, from here.)

However, with regard to marches, the opposite is true for me. It is all about the destination; I want to go on the interstate highway of marches. I wanna zoom past all the scenery, stop only to pee, get where we're going using the straightest line, and arriving as fast as possible. Just like a family car trip, it's a means to the end; and not much of a fun one at that. The 2007 ADAPT Action in Chicago last week, reminded me of that.

On Marching

There is a rhythm, an ebb and flow, to a demonstration. First, there is the lining up. Excitement builds as we find our groups, meet our teams, and get our colors. Then, as adrenalin builds, all you want to do is hit the road!

The march begins; then stops, then starts, then stops again. At last, it is on the move. The chanting begins and builds; the singing swells.

It is difficult to contain a roving throng of people. Discipline and security keep a march together. One break in the line and the results are similar to a hurricane making landfall; it just falls apart. It is heat that keeps a hurricane and a march strong. As a result, there is the inevitable and nearly constant reminder to, “tighten up” coming from the organizers. Marcher crankiness ensues, chanting strains, and the singing drifts off-key. Marching becomes drudgery for marchers and march organizers.

Marching in my hometown of Chicago was especially difficult. The crumbling infrastructure threatened every marcher. Potholes, dips, chunks of road, broken grates, and openings between bridge parts all entice ankles to turn and tires to flatten or get stuck.

I had never marched single-file before. We shared the road with the city’s traffic. Concentrated vehicle exhaust fumes are noxious and force your head to throb. It is the body’s way of saying, “Get the hell out of here!”

I love the sound of my city. Normally, horns honking sound like nightingales to me; the roar of the “L,” a lullaby. But, not when my head is pounding; I finally understand what small town folk mean when they talk about the noisy city.

Ahhh… but the destination, the action at the end of the march, that is like 4th grade recess. It is unabashed, shameless fun for my comrades and me.

On the Action

Finally, stuff to do. Raise a little ruckus; show our tuckus; play a little music-kus? I was ready for some murderball!

I was in the green group… the last group on the first day of the Action. We had three ADAPT organizers leading us. In hindsight, I see that our leader’s behavior became more intense, conspiratorial, as we closed in on our target (the American Medical Association [AMA]). Had I not been sucking carbon monoxide for two hours, I might have noticed then.

Suddenly our group leaders broke away from the main group, screaming at us to follow. And, we did, passionately and unrestrained; though we had no idea where we were going. We bolted down the side street, and turned down the next. We were now racing down hill, below street level, and parallel with the other marchers. Now that was fun!

On the side street, a young traffic warden looked up and saw our band of 30+ stampeding toward him. You could see the unmistakable look of terror in his eyes as he saw us break ranks and head his way. His “deer-in-the-headlights” expression betrayed his “look-like-you’re-in-control” training. As we blew past, he grabbed his walkie-talkie and gave up our position.

At the bottom of the hill, we re-grouped and made swift plans to take control of the parking garage. We had hoped to get inside, but the gate was in lock-down. Instead, we filed our wheelchairs into and occupied the ramp. No one was getting past us.

After the initial rush of adrenalin, we settled in, and started getting to know one another. We had been in a single file line for nearly three hours; first lining up, then marching. Now we could actually see one another.

I found that a friend, Rene, was in my group. I had not seen him until we were there for an hour. It was great catching up with him. I introduced myself to other activists I had seen elsewhere, but never met. Several women from the F.R.I.D.A. (Feminist Reaction in Disability Activism) list serve were there too. Now I can put a few faces with names. Along with seasoned activists, I met people at their first demonstration. They gave me hope for our future; their bright-eyed enthusiasm was contagious.

Since we separated from the rest, I worried we would not have good communication; I should not have. ADAPT organizers went out of their way to make sure we had the latest information, praise us for our tenacity to remain at our post, etc.

At my age, sitting and not moving is easy. With the company around me, why would I even want to? Besides, we had a parking garage to blockade.

Rock-On Adapt

Negotiations ran hot and cold; ADAPT, thoughtful and firm, negotiated throughout the day. The demands presented to the AMA were spot on, as they were with all the targets. At the end of the siege, after the police cited and moved protesters, we gathered in the plaza in front of the AMA for a short rally and then lined up to march back to the hotel.

ADAPT’s role is controversial; yet fills a vital and important function for our movement. Are they the radical fringe. No. The Weather Underground was a fringe group. ADAPT isn't blowing up any buildings.

Are they disruptive? They sure are. Do they do things to get attention? Well, that is exactly the point. Are they single-minded in their freedom fight? Absolutely they are; and that is why I am proud of my association with them at the national action this year.

Epilogue

I did not line up to march back. I can be compliant for only so long. I had my own little break away. Wandering off in another direction, I wanted to be alone with my thoughts. However, I did go back to the hotel and stayed there until the marchers returned. Only then, I crossed the street and made my way to the Metra station to go back to my hotel.

From that vantage point, I watch them for a long time. Tears well in my eyes at the beauty and diversity of us all. It was a really good day.

Our People, United… Will Never Be Defeated.

Thursday, September 13, 2007

"Collectively They Are Pretty Spectacular"

As Mike Miner eloquently put it, after coming to peer out my window, “Individually, no one's more invisible than a person in a wheelchair. Collectively they're pretty spectacular."

The comment was on the Chicago Reader’s (CR) web editor, Whet Moser’s blog. Senior editor, Martha Bayne, wrote the entry. CR is one of the city’s alternative newspapers with offices across the street from the national American Medical Association’s (AMA) headquarters on State Street. They had a bird’s eye view of ADAPT’s September 10, 2007, siege on the AMA; and I was lucky enough to be in that collectively spectacular group.

It is not about me, but…

At fifty-eight years old, and nearly 30 years in the disability rights movement, this was my first national ADAPT action. I attended local ADAPT events in St. Louis and maybe once in Chicago (Forgetfulness or dream, I am not sure). I readily acknowledge, a national action is way different.

I attended anti war-rallies, peace vigils, marches, parades, mass actions and other events concerning social justice issues in the past. Nonetheless, the ADAPT action definitely tops the list.

Photo Description: Pictures a crush of protesters, tightly packed into an area. We packed our wheelchairs in tightly and had others standing or sitting in between, making it impossible for anyone to get through. A successful blockade. A circle highlights one woman near the back.

Caption: My group broke from the rest and charged to block the underground parking ramp. As you can see, nothing is getting through. Circled… moi.


I was so proud to stand with my brothers and sisters with disabilities from across the US. I love their commitment, agitational nature, intellect, humor, the righteousness of our cause, and the selflessness it takes to do pull off such an action.

I could only attend the first day’s action. It was kismet that the AMA was our target. Doctors are one of the biggest barriers to community living. They profit from sending people to institutions that they, or their cronies, own. I am often critical of the medical establishment's insensitivity to people with disabilities in my blog and was glad be at the AMA in person. (See the list of demands ADAPT presented to the AMA.)

I know I will write about aspects of the action in the days to come. But where to start? Today I want to comment on comments.

Comments

After leaving that first day, the internet became my umbilical cord all that happened. I immediately began looking for details. ADAPT, Not Dead Yet and Disability rights bloggers, made me feel very connected with regular updates. I also read the Chicago Tribune, AP wire and the CR, coverage. If I could not be there in person, at least I was able to be there in spirit. The internet was link between me and the “actioneers”.

After each newspaper update, reader comments reveal how others perceived our fight; It was also a place where ADAPT members and supporters did a great job writing about the difference between what constitutes an inconvenience, verses the denial of basic civil liberties.

Many of the people who wrote comments were trapped in the AMA, State of Illinois building (day two action), or somewhere around AFSCME (day three).

To be kind, they did not get it. Even when spoon-fed the connection between the AMA, the state or union, all they understood was, “I’m mad. You are the reason I was late (didn’t eat lunch… missed my ride… got a headache); therefore you are wrong.” Rarely, did they see our targets as complicit in our oppression; they readily identified with the oppressors rather than the oppressed.

While was disappointed with that reaction I was not surprised. However, the venom that a few spewed did. One guy simply wrote, “I hate you.” Oh.

Another person, Sean, wrote:

Invoking the Civil Rights movement, no matter how inapt the analogy, is another way to make sure people don't take you seriously. When the disabled are routinely lynched, denied the right to vote or hold office, jerrymandered [sic] out of effective representation, and attacked with fire hoses and dogs while conducting a peaceful march while the law either turns a blind eye or actively participates, get back to us and we'll link arms with you and sing "We Shall Overcome."

No, Sean, but we certainly see plenty of people with disabilities murdered for no other reason than having a disability.

How? By:

  • dehydration and starvation
  • neglect and abuse
  • poisoning
  • organ donating
  • medical experimentation
  • infanticide
  • eugenics
  • being over medicated, and
  • a host of other horrors.

Many of these murders happened to people locked away in institutions and then buried in mass and/or unmarked graves.

What Sean (and others who cannot be bothered with understanding another person’s struggle) does not begin to understand is that people with disabilities ARE denied the right to vote, hold office nor have other rights of citizenship. To this day polling places remain physically inaccessible to wheelchairs and have paper ballots people with disabilities cannot read. It’s not necessary to gerrymander districts to deny people with disabilities the right to vote deny them representation. It is much easier than that in this society.

He is ignorant of, or cares less that, the law has turned a (his word) "blind" eye to, participated in, and even encouraged discriminating against people with disabilities for all history.

Until the last 2/3rds of the 20th century, we had no right to education, to eat in a restaurant of our choosing, see a movie, use public transportation, or even expect rights equal to others. Many of us could not have sex or choose marry, or have children based on our disability. Doctors did and still do sterilize us. Institutions have pulled out our teeth without justification; straitjacketed us; restrained us, both physically and chemically; lobotomized us; shocked us; and institutionalized us.

Sean, and the others, makes our fight harder. They unwittingly or callously (it really does not matter which) fight to maintain the status quo. He does not want us to overcome; or share a piece of the pie, or dream, or even crumb from the table he sits at comfortably. No, Sean would not link arms with sing and “We Shall Overcome,” with us, unless he has a dramatic conversion, or gets MS.

So, understanding the status of our relationship, we have only one choice. We should run over, and/or otherwise get around Sean, et al. If they are not with us, they are against us.

Others will understand. People who have a basic idea of fairness will understand. Their comments were sprinkled like confections between the flames. People who experience their own discrimination are more likely to understand; they will be our allies. To them, I say… “Join with us; welcome to the movement.”

Steve Drake of NDY sent me by far and away the best comment from the movement's newest supporter, Lager Beer Riot.

Saturday, September 8, 2007

We are All Immigrants

Jeff Parker, Florida Today, 2006
_______________________________________________________


I lost the link to this. If you're aware where it came from,
please let me know and I'll give appropriate credit. Thank you.

_______________________________________________________

http://www.michnews.com
_____________________________________



Tuesday, September 4, 2007

Criste Reimer Update

I originally wrote about Criste Reimer on August 18, 2007. The day before, this article appeared in the Kansas City Star. I just found it today. Criste's mother, Delores McCandless paints a very different picture of her daughter's health than previously reported.

Mother Talks About Daughter Killed in Fall From Apartment Balcony
By TONY RIZZO
The Kansas City Star

The mother of Criste Reimer released several photographs of her daughter on Friday. They showed Reimer’s thin condition in April, left above, and how much weight she had gained by July before leaving her mother’s home. As the family of Criste Reimer began making funeral plans Friday, her mother recounted the last time she saw her daughter — just days before her death.

“Mother, I need to be here,” Dolores McCandless said her daughter told her as she was leaving her mother’s Wichita home a week ago today.

Reimer pounded the kitchen cabinet with her hand as emphasis, McCandless said.

Three days later, Reimer died in a fall from the balcony of the Country Club Plaza apartment she shared with her husband, Stanley Reimer, who is jailed on charges that he threw her to her death.

According to court documents, Stanley Reimer told Kansas City police that he walked with his wife out to the apartment balcony, kissed her and threw her over the railing about four stories to her death. He said that he was having “extreme financial difficulties” and could no longer care for her, the documents said.

McCandless said Friday that if Reimer was no longer able to help his seriously ill wife, she was more than happy to care for her daughter.

“She had a home here, and he knew it,” McCandless said. “She felt safe here.”

Reimer, who suffered a host of medical problems dating to childhood, lived with her mother from April until July, when Stanley Reimer said he was taking her out to dinner but instead took her to Kansas City, according to McCandless and other family members.

McCandless released several pictures of her daughter Friday that show her thin condition in April and how much weight she had gained by July before leaving her mother’s home.

“He wooed her out to dinner for their anniversary,” McCandless said.

Last Saturday was the first time McCandless had seen her daughter since July. She said her daughter’s part-time caregiver drove her to Wichita to pick up clothes.

Stanley Reimer is charged with second-degree murder and is being held on a $250,000 cash bond.

To reach Tony Rizzo, call 816-234-4435 or send e-mail to trizzo@kcstar.com

http://www.kansascity.com/115/story/236876.html

Monday, September 3, 2007

Letting Go: They Loved Him to Death

Note: I want to thank Valerie Brew-Parrish for sending me the Denver Post article. She wrote an article about "disablicide" for the Joliet, IL paper that included Dylan and a journal later picked it up. She sent me the link after I published the Ruben Navarro piece. Thanks Val.

We do not have to wonder how four-year old, 32-pound Dylan Walborn died. We have the whole picture… the full Monty… complete with a nearly 11,000-word story, two multi-media presentations, message boards, and opinion, all brought to you by the Denver Post.

Dylan had a stroke while in utero causing him to have cerebral palsy (CP). He then defied a medical opinion that he would die in his infancy. The article describes Dylan’s CP as an “overarching term for a condition that left him virtually blind, deaf, immobile, and unable to communicate or perform any voluntary function.” He had a tracheotomy and a feeding tube.

Kevin Simpson a Denver Post reporter wrote, Letting Go. Photojournalist Andy Cross also assisted. It appeared in the October 28, 2006 edition. For his work, Cross received a runner-up journalist award for documenting what it is like to “slowly lose a child.”

The term slowly is accurate; it took 23 days for Dylan to die because of starvation and dehydration; “lose a child” is not at all accurate.

He did not run away at the mall. No one kidnapped him at night. He spent all 23 days in his mother’s apartment, with his parents, and a reporter documenting the entire ordeal. Dylan’s parents, Kerri Bruning and Dave Walborn perceived his bad days outnumbered the good, they spoke with the physicians and ethicists at Denver Children's hospital; then made the deadly decision to withdraw food.

Ministers, grandparents and others came to the apartment throughout those 23 days without food. The article describes visitors coming ‘in waves”. Dylan’s grandma even threw a little party in his honor, the day before they withdrew food.

Questions and Inconsistencies

This story is another example of under the eye of the medical establishment, including ethicists, parents take the life of their child with a disability.

Where was Dylan’s advocate in this process? No one stepped in to represent the child’s interest, or to even question if Dylan had a right to his life. He was not dying. The only thing threatening his life was the starvation forced upon him.

On one hand, the article discusses Dylan’s inability to have any voluntary function. On the other, it says his face indicates he is in pain and that it shows he is devoid of joy. People in Dylan’s life interpreted his life as not worth living, then used the perceived involuntary muscle movement as documentation of their own bias.

Dylan’s seizure activity was on the rise. The article argues that adjusting and/or increasing his medication is a less desirable alternative than dying. The journalist describes Dylan’s seizure activity mentioning he sheds tears when he has a seizure. It does not say studies show that tears while having a seizure indicate he has a certain type of seizure. There are also other reasons why his eyes may tear. But the write wants us to believe it is a justification for killing him.

The article discusses Dylan’s brain damage; but fails to ask if he was brain dead. What did Dylan actually see, understand, or want? He will never get the opportunity to answer that question. Did any one conduct a speech evaluation to see if assistive technology could reveal his potential for communication? Children who have had severe stokes have been able to retrain unaffected parts of their brains to take over functions affected by the stroke with intensive therapy. Did Dylan get that chance; or did the doctor write him off?

Options

Our medical system makes life as hard as possible for parents of children with severe disabilities. However, there are options.

If his parents no longer wanted or were unable to care for Dylan, they could give him up. Does that sound callous? It is certainly far less callous than withdrawing food. Physical, mental or financial exhaustion is no excuse for killing your child.

People will say, "It's wrong to ask a parent to give up a child they love." And I agree, to a point. The point ends when that love leads them to want to kill the child. We hear the argument in adult relationships a lot. A man kills his wife/significant other, because if he cannot have her, no one can. People with disabilities can live without that kind of love.

In August, I saw a news story about Brook Barels. She is six, has CP and wants to walk. The family (who could not afford it on their own) and friends raised enough money to take her to China. They are treating children with CP with stem cells to give them more control over their bodies. Three months after her first treatment, she is walking with a walker. Before she did not have the ability to stand, even with support.

In April 2007, a Hungarian teenager saw swift gains in his ability to walk, write, focus his eyes, and concentrate after receiving cord-blood stem cells. It is all documented in unedited before and after videos. Does this sound like dreaming? If parents of children with disabilities will not dream for them, who will?

I'm not suggesting that parents of children with disabilities should run off to China for stem cells. I'm saying, if you're considering killing your own child with disabilities (or any other child) because you perceive he should not go on; STOP!! It's murder. There are other extreme options to consider first. His life belongs to him. not you.

In the end, Dylan had no options because no one gave him any.

In a sidebar to the main article, Dr. Stefan Mokrohisky, chair of the ethics committee at Denver's Children's Hospital says, "I guess you could say that even the medical intervention to provide the nutrition is no longer a benefit when compared with the burden of current existence."

"...Compared with the burden of current existence." Whose burden is he talking about? A mother's caregiving burden? Society's financial burden? The burden of putting food down a feeding tube? All of the above?

It has absolutely nothing to do with the humanity and basic civil rights of a tiny four-year-old boy with disabilities.