Your "Disease" is my Lifetime Companion.
Watch it, Buster.
Fodderize by generalizing.
Down Syndrome is no more fungible than bald head syndrome. Vet the concepts before coming to conclusions that A's are alike, and to be treated in one way, but B's are not.
Take the concept of Syndrome itself. A dreaded term. A syndrome is a "set." A gang of "things." In traditional "medicine," a set of:
- signs and symptoms (ooooh!)
- which tend to occur together and
- which represent the presence or absence of a particular ( more oooh!)
- "disease" or (is there hope? NO! No hope)
- an increased chance of developing a particular ...
- ... there we go again - "disease."
How does "syndrome" fit with people with an extra chromosome? There may be a connection with some with related heart issues or something, fair enough. But that chromosome arguably makes them more humanly kind, spontaneous and giving than the rest of us. What's not to like. What does the world need more of. Rush or Dan? Whose household has more genuine, good-hearted fun? Who keeps close relationships. Ask. See Vetting Authority.
2.1. Are we cataloguing-crazy in our culture.
We are obsessed with finding "disease." Are we? Is every person that follows or has a different internal-genetic-whatever-drummer diseased? Do they have an affliction that reduces their ability to enjoy life, is leading the body to die faster, puts them in pain, inflicts diminished quality of life so the "afflicted" should be deprived of it or subjected to efforts to "cure?"
We may indeed be uneasy ourselves around difference - color, gene codes, the wheelchaired, gender issues, languages - but that is us, not them. Does that make sense?
2.2 Difference, not disease.
Differences in sorts and conditions of children and adults can be joyous, or tragic, or unexpected, or fascinating. Variations on a theme of overall humanity, like all of us are. Like Paganini - Variations on a Theme. Different sounds, recognizable melodies all.Think Daniel Lessner and Brahms - at YouTube at //www.youtube.com/watch?v=WNgCKkdH9cw/. Or Bach Badineri - at ://www.youtube.com/watch?v=s9Dn6AuIgHI/.
No "disease" just because the melody modulates, moves around with the orchestration.
The Old Propaganda At Work
How do you know?
Either we know something is true,
a) from our own experience; or because
b) we have been taught.
Do you trust the teacher? That becomes the issue. Who told you so. How do they know. Vet. Is it the bombast or ideologue persuading, or a measured, objectively weighing fact-thinker, and who has which agendas. See perception management at work here - phrase first seen in David Baldacci's book, "The Whole Truth," not wonderfully written, too many sobs and tears, but a catchy phrase: Old paradigms.
- Style. Preppy gives status. Still? Once did. Perhaps preppy is a disease. The preppy syndrome. Characterized by pink and lime green. Will Lilly never die? Preppy, no socks, tassels, the holy grail of the boomers. Is that right? And Preppies can be cheerleaders and then become president. How silly is that, when preppy becomes the main stepping stone. Are we past worship of the preppy?
- Belief. Evildoers. The culture of Belief identified the good vs. the bad not so long ago, and some even now, say, this one is evil, has moral "Disease." Not human. The traditional pogrom justification program.
- Genes. Some say of human conditions, that these here are not to be recognized, and certainly not to be kept in my family. Their choice, but how much of it is perception management, by language itself. Lay out a "syndrome" and someone will define it as a pejorative. Then another person will accept it as given, and act accordingly. Away with difference.
Think of labels and how they work as to "status." Labels ascribe status. Keep this or dump that. The home organization boxes that say Keep, Recycle, Discard.
Labels too easily lead to less thinking, not more. Just put it in the box and be done with it. Institutions especially like the shortcut of labels. So do political parties, talk shows filling up their time by wasting ours.
Back in the day, we recall holding the hall phone back in the long kitchen hallway, and saying, "Wait, I'll get the maid."
Louise Wilson then appeared in her starched uniform. Looking stern.. With those pearl buttons on pokers that went through little holes, tall, thinking, dignified, educated, light-skinned black and living in (separate quarters up the back stairs for that in the old houses) and working in our kitchen five days a week, overseeing all meal functioning. Her husband, Walt, would come sit in the rocker by the fridge off and on. Breakfast, lunch, dinner. There it all was. Magic. We still make "Louise's eggs."
"No maid!" she hissed at me. "NO MAID!" And she was right. She was no "maid."
The greatest teacher of all. Propaganda.
The term "propaganda" is old now. It has become too closely connected to WWI, WWII, Nazi, Cold War heating up again, to be truly effective as a concept. It can be disregarded because it sounds foreign, sinister, manipulative, and we want to think we are too educated by now to be swayed like that.
So - change the label to Perception Management. That meets current subtleties. Look it up. beyond use of the term in Baldacci - go beyond Aristotle's Three Legs of Persuasion, see The Manager, at ://www.themanager.org/hr/Three_Legs_Of_Persuasion.htm/. Learn the concept. Your ideas are being managed. Is what you think not your own?
Perception management enables us to label in ways that Miscue, Purposefully Diminish People, put them in Boxes to serve somebody's goal in asserting a superiority, and not "describe"in a neutrally informative way.
Daniel Widing, Lifetime Companion, Politically Involved, there with Uncle Don waiting to see Candidate Obama.
6. A condition is not a predictor of contribution.
- Think of all of us, and see what we were born with. And the variations that are possible:
- Who has more value among us? What is value, to what, why, for whom.
- Rush Limbaugh, Chucky, the entertainment-exploitation world; will they be wept for when they die, or will there be broad relief that they indeed failed. More value in their work?
- Or in our son, Daniel, Customer Service Clerk, about to turn 36 and with - horrors! "Down Syndrome".
Each person, unique. Choices to be made at every step, for those in positions to make choices. What to do about or with what, but at least have full information, each situation its own, deciding in fear and trembling, more choices and different ones as time goes on. Location, location. Breath. Common sense. Keep, not keep, foster out, embrace, hide, deny, how best to promote this one's independence, how to foster skills, flexibility, confidence. How to allow a decider to recover. Moral decisions are that way. There is ambivalence. Personal. To be weighed, lived with by the people making the decisions, their reasons. To be allowed to do that. Balance lives. No one automatic here, another there. No automatic.
4.1 Legislation either way. No.
4.2 Pregnancy Testing for it? Can't stop it - there's money to be made. New techniques every day. People think they can shape their lives. Maybe so. Maybe they can. Maybe not. See Lenetix Inc. at ://sev.prnewswire.com/health-care-hospitals/20090128/SF6280028012009-1.html/ Fine. Information. Not so good, however, when early crude techniques to get that information led to too many miscarriages, the slipped needle or whatever, errors, but we understand techniques are better now.
4.3 For any decision, manage the perceptions so information used by a decider is neutral, accurate. What perceptions have developed that lead to the desire for the test. Until the climate is receptive, welcoming, for any pregnancy, there will be cries for terminations, and that is the logical outcome of the stage we set as a culture. Youth, perfection, problem-free lives, style, double standards, all get weighed. We ask for it. So - efforts needed on the perception side. There are many sides to a reality. Noone else in a position to weigh. FN 1
5. LCS. A Condition. An area that can benefit from realistic, neutral, informational, full spectrum of possibilities, Perception Management.
How to foster a truer image, not maudlin, just opening up other ways of seeing. Hear again that old Darlin' Companion - Johnny Cash and June Carter - hear://www.youtube.com/watch?v=xOzrk1cqgyM/ Influence the choices - no bans on them.
Experience. Get to know people with LCS. Imagine, or better yet, take them new places. Love the dated. Don't redecorate the house - live with the little bathroms and popcorn ceilings and formica, and go somewhere instead. Investment choices. In people. Yours to choose. Or not. One size does not fit all. FN 2
Watch how the news that "it" has "Down" "syndrome" in there, is received. Watch folks opt out fast, and because we set that up. We are responsible. Perception management. The Down may be somebody's last name, but it conveys the opposite of up. Or choices based on gender, other selections touted by a culture as more desirable. Information is not the issue. It is why the information is sought. And that is us.
Go ahead. Test for the baldness gene in utero. Bald is flaw! Make your decisions about whether you want to live with a bald person or not. But at least decide on neutral information - not on the basis of somebody telling you the condition makes the person disposable, fungible. You'll have another, dear. Vetting. Vet our own assumptions. Vetting is good.
FN 2 Meet Dan up there. He has LCS - Lifetime Companion Syndrome. Finally, we as a family concoct a label that fits, when all others have failed us, and him. My mother said to me, wistfully, when he was little, "You'll never be lonely." And she was right. Learning best by doing? See Europe Road Ways. We never dreamed that could be.