The Tao of Stem Cells
I use this title to give reference to Aiden Crane's Dad, "Useless Tree" blog because after reading some of the entries on his blog, I found myself time traveling back to China during the 5th century b.c. Some of the details about China at this point in history are fuzzy. It has been a very long time since I time-traveled. In fact, it's been 20 something years.
"If you have a thing to shrink, you must first stretch it;
If you would have a thing weakened, you must first strengthen it;
If you would take from a thing, you must first give to it."
I remember this dream:
I see Lao Tzu (old man) is writing out his "five thousand characters" near the Pass, and I hear the comforting words below from Confucius saying we must love without discrimination even though warring factions are brewing and warlords will be soon ascending upon this place of tranquility.
I am weary of war.
My body flies over the Himalayas to stop in India where Susrata is doing the first cataract operation and over in Greece where Alcmaeon of Croton is making the connection between the brain, blood vessels, and arteries.
I am carried further back to unrecorded time finding a person hovering over another person who appears to be dead. It appears this person is carving a sharp object into the dead human body. In the bushes, there is person hiding who gasps at what is happening and runs away. The person continues with the work at hand but is interrupted later by a group of people who are shouting. It looks like this person with the sharp object is trying to explain something but nobody is listening. He is engulfed by the sound.
I am weary of ignorance and fear.
I can't help thinking of the horrible consequences for the first person who performed an autopsy
and how similar the situation is today for a young geneticist finding a way to reverse a mutation.
We ask where do we draw the line?
By drawing a line disconnecting the present from the future, the past from the present, or the past from the future, we are disconnecting the flow.
"All the primitive forces of nature known to humans appear to be flowing in one direction while forces driving the inquisitive nature of humans flow in the opposite direction. " ~ DH Saul
Friday, February 2, 2007
Where did my old blog go?
Who knows ... the old blog under http://elisabethsmom.blogspot.com still shows up in google searches and google crawls, I cannot access it so I had to create a new one until somebody finds the old URL ... I am still missing about 45 articles here and trying to rebuild the information that was zapped into cyberspace .... BTW Google has really been a great help here!
UPDATED: GOOGLE FOUND MY URL AND NOTIFIED ME ABOUT THE LOST BLOG. Unfortunately, some of the contributions made here the last 3 years are gone too.
UPDATED: GOOGLE FOUND MY URL AND NOTIFIED ME ABOUT THE LOST BLOG. Unfortunately, some of the contributions made here the last 3 years are gone too.
Thursday, February 1, 2007
Apples and Oranges?
Ashley's Treatment ... Finding Room to Grow Carrots under the Apple Orchard.
Ashley's Treatment; Growing Carrots under the Apple Orchard I've been reading about Ashley and her parents with great interest. Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. The good news is that Ashley's parents have broken through the barrier for their daughter, ad hominems and all. The bad news is why they had to resort to doing this for her.
It scares me when children like her continue to be most of the time invisible to people except when their disability becomes the focus. And most times, what people see is what we don't want them to see -- on object of pity or object to protect. Everyone wants to own her but no one wants to own the reason why her parents resorted to surgery so she could fit in. Instead of people looking at her emerging ability, the focus became what she can't do which is often times used as the basis for planning her future. People did not value her as an individual who has very different needs. She is present but she is was not included.
When we advocate for our kids, it's not based on what they can't do. Do we tell kids they can't play baseball because at 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability. So why can't we do this for children who have global delays?
Ashley's Treatment; Growing Carrots under the Apple Orchard I've been reading about Ashley and her parents with great interest. Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. The good news is that Ashley's parents have broken through the barrier for their daughter, ad hominems and all. The bad news is why they had to resort to doing this for her.
It scares me when children like her continue to be most of the time invisible to people except when their disability becomes the focus. And most times, what people see is what we don't want them to see -- on object of pity or object to protect. Everyone wants to own her but no one wants to own the reason why her parents resorted to surgery so she could fit in. Instead of people looking at her emerging ability, the focus became what she can't do which is often times used as the basis for planning her future. People did not value her as an individual who has very different needs. She is present but she is was not included.
When we advocate for our kids, it's not based on what they can't do. Do we tell kids they can't play baseball because at 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability. So why can't we do this for children who have global delays?
Wednesday, January 31, 2007
How To Treat Disability? Call Superman, Who Else?
How To Treat Disability? First, Call Superman!
How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability. This was Pearl Buck's mission here in America. It is through Pearl Buck's advocacy for inclusion and independence where our past meets the future. In terms of linear time, we have made progress since she found quality care for her daughter in the 50s. We have made progress since John Hockenberry's Uncle Charlie was institutionalized but we can't assume that just because we "see" them out- and- about that they are also "included." Inclusion goes beyond seeing our family and friends out in public; inclusion is an immersion of our thoughts, creative process, and actions.
In regard to accessibility and mobility, I have heard over and over and over from people with disabilities they are only an "after thought in planning" even with the current ADA standards in place. I've read the silliest excuses and legal exemptions for leaving things inaccessible. For example, a national historical building was seeking funding for installing push buttons to open doors. The historians and newspapers went bananas because it interfered with the integrity of the building. It became an internal political battle like most things. Innuendos about secret motives, ADA allowances, and love affairs were among some of the reasons why it shouldn't be done until somebody mentioned it was the right thing to do.
Recently, a mother informed me that the "everybody counts" program was dropped from her school system because it wasn't needed anymore. I laughed like always do when I hear irony in action. It was considered outdated by the PTA and some of the exercises made people feel uncomfortable because two of the students had "handicaps.
Inclusion is learning process. It's about including one person at a time which is something we cannot fathom when we have the attention span of a few minutes. Making something the height and depth for a wheelchair and slapping a sticker on it while leaving other areas inaccessible is not inclusion.
I can't help but think about the hilarious slapstick of Charlie Chaplin in "Modern Times" when he get caught in the gears of that giant machine. I can't think of a better way to describe what happened to Pearl Buck's vision of inclusion. Somewhere it got stuck and jammed the system. The challenge is identifying what caused the clog so it doesn't happen again or at least hire a new quality control team so if it does clog, it won't shut down the entire operation.
I propose we stop the machine, rescue Charlie, and start it up again. And the first thing I'd like to do is have a national "Superman" day where EVERYONE spends the entire day either navigating or assisting a person using a wheelchair for mobility.
How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability. This was Pearl Buck's mission here in America. It is through Pearl Buck's advocacy for inclusion and independence where our past meets the future. In terms of linear time, we have made progress since she found quality care for her daughter in the 50s. We have made progress since John Hockenberry's Uncle Charlie was institutionalized but we can't assume that just because we "see" them out- and- about that they are also "included." Inclusion goes beyond seeing our family and friends out in public; inclusion is an immersion of our thoughts, creative process, and actions.
In regard to accessibility and mobility, I have heard over and over and over from people with disabilities they are only an "after thought in planning" even with the current ADA standards in place. I've read the silliest excuses and legal exemptions for leaving things inaccessible. For example, a national historical building was seeking funding for installing push buttons to open doors. The historians and newspapers went bananas because it interfered with the integrity of the building. It became an internal political battle like most things. Innuendos about secret motives, ADA allowances, and love affairs were among some of the reasons why it shouldn't be done until somebody mentioned it was the right thing to do.
Recently, a mother informed me that the "everybody counts" program was dropped from her school system because it wasn't needed anymore. I laughed like always do when I hear irony in action. It was considered outdated by the PTA and some of the exercises made people feel uncomfortable because two of the students had "handicaps.
Inclusion is learning process. It's about including one person at a time which is something we cannot fathom when we have the attention span of a few minutes. Making something the height and depth for a wheelchair and slapping a sticker on it while leaving other areas inaccessible is not inclusion.
I can't help but think about the hilarious slapstick of Charlie Chaplin in "Modern Times" when he get caught in the gears of that giant machine. I can't think of a better way to describe what happened to Pearl Buck's vision of inclusion. Somewhere it got stuck and jammed the system. The challenge is identifying what caused the clog so it doesn't happen again or at least hire a new quality control team so if it does clog, it won't shut down the entire operation.
I propose we stop the machine, rescue Charlie, and start it up again. And the first thing I'd like to do is have a national "Superman" day where EVERYONE spends the entire day either navigating or assisting a person using a wheelchair for mobility.
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