I'm an artichoke: Empowering people with serious disabilities

Dr. David Spiegel's story on Ed Roberts:
Ed Roberts, was transformed in 48 hours from star high school baseball player to permanent quadriplegic on a respirator by the polio virus. He has come to lead a remarkably independent and full life despite this, rising to become the head of the World Institute of Disability in Berkeley, California. After several years of deep despair, with his mother’s help, he applied to the Department of Rehabilitation of the State of California for entrance into its training program. He was rejected, with the comment hat he was "unrehabilitatable." He went to school anyway, gained considerable experience, and 2 years later became the commissioner of the same department! He is an energetic, outgoing man, who seems to project himself beyond his wheelchair, attendant, and breathing apparatus. He took steps to see that the disabled had control over those who helped them – making them, rather than the state, the primary employers. And he rails against the exclusion the disabled feel. (He hates the term "handicapped" – it comes from being "cap in hand.") Looking up at a roomful of bright young Stanford medical students, he said: "I think of you as temporarily able bodied." By mobilizing the disabled to share and work together, he was able to redefine the world of the able-bodied, and change it. "The doctors told my mother that I would be a vegetable," Ed commented. This was quite a mistake – the poliomyelitis virus attacks motor neurons, not the part of the brain that thinks. "But it turns out they were right – I am. I'm an artichoke: prickly on the outside, with a big heart in the middle."

Ed's transformation from a socially isolated, depressed, despairing young man who had lost "everything" into an effective, vital man who boasts about the quality of his life despite his serious disability, came in part through his contact with other people with disabilities. Through them he learned that he did not deserve what had happened to him, that he was not less of a person for it, that he could find other ways to rebuild his life. This resulted not from denying nor hiding from his disability, but rather from making it the starting point of new relationships and a new perspective on life. People with life-threatening illness do the same thing every day, and many more could, if they stopped suffering in silence.

Advice: Live like Ed.

Read another story about a disabled athlete.

Thanks to Dr. David Spiegel for the source – the book "Living Beyond Limits."

$9.8 Billion of its own cash: High price of drugs

The big news today is of Merck’s acquisition/merger with Schering Plough, for $41 billion. Natasha Singer writes in today's New York Times that "Merck will use $9.8 billion of its own cash for the purchase." Hmmm, who did all that money come from?

Linda R. has a hunch, and a personal interest. Her letter, written a few days before the Merck/Schering story:

The drug companies use the high cost of current drugs to research new drugs that aren't even necessary. It's all a big money-making scheme. It's, "Let's see if we can come up with a drug for hangnails", and then "here's how we'll market it." Then they push the idea down consumers' throats with TV and magazine ads and push them on the doctors with salesman and samples. It all fuels big drug company profits. And when Congress or anyone asks, "Why are these drugs so expensive?" The drug companies say, "It's the cost of research!" Research for what? For another sleeping pill? For another drug for toenail fungus or mood swings. How many pills do we need out there for common maladies? It's all a scam!

This is what I'd like to see done. I'd like to see a watchdog committee go in and see just how much it costs to make a variety of 2nd-tier and 3rd-tier drugs. See how much the actual cost of the drug itself is. And when we have a National Health Plan in place, the government will only pay the actual cost of the pill. Let philanthropists fund research for important, groundbreaking discoveries and cures! Let the drug companies get out there with their hat in their hand, like every one else instead of taking it out of lower income pockets.

And then there are the patent laws. Why are drug companies allowed to have 5 and 10 year patents on new drugs? Back in 2001 when I was uninsured, I had to pay the $100 for a month's supply of a drug that an insured person only had to pay $20 or less for. It was part of what bankrupted me. And now there are other ways to get prescriptions at insurance coverage cost, but are people being actively informed? About stores like Costco that have a special program for uninsured people so they can buy their prescriptions for the same price as insured people? From experience I can tell you the answer is "No." It's only becoming known by word-of-mouth. I wonder why...

This article says it all much better than I can ---- "The Truth About the Drug Companies." This article tells it all.

I understand that the government doesn't want to oversee big business to the point of screwing up the capitalist system. However, government officials need to remember what the word "government" means: "Government is the body within any organization that has the authority to make and the power to enforce laws, regulations, or rules." The U.S. government needs to step up to the plate and start making new laws and enforcing new laws that will protect the American people from greedy and disreputable capitalism that directly affects Americans' quality of life.

My apologies, but this is what gets me on my soapbox! Thanks for helping. Go get 'em! One step at a time! One law at a time!

Advice: Help to pass one law at a time.

Read a story about high drug costs.