Please note, some of what I’m going to say is probably offensive or hurtful to people with disabilities, parents/guardians/caregivers of children with disabilities, their families, their friends, and their allies.  If you find that triggering, or simply don’t want to deal with it, that’s fine.  The Internet’s a big place, you can find something else to do with your time.

I think I’ve mentioned that I’ve got not one but two disabled brothers.  The older has high-functioning autism, the younger is much more low-functioning.

I once asked my mom (back when I was a teen and very pro-life) if she would have had abortions if she knew that OlderBro and YoungerBro would turn out the way they are.  She thought about it for  a minute, then said “no”.  She didn’t expand on it, and in my youth I didn’t think to ask.

But I know later, on her death-bed to me, she confessed “YoungerBro’s been really hard”.   Meaning that his lower functioning has been hard not only on him, but on the family.

And it’s true.  YoungerBro’s disability left him with (among other things) hyperactivity, meaning he would not, could not sleep at night.  I can’t tell you the number of years OlderBro and I went to school sleep-deprived, my dad went to work sleep-deprived, my mom went without sleep, period, because she was YoungerBro’s primary caregiver.  He made strange, loud noises all the time, leading to frustrating encounters with police officers who thought we were abusing him.  When we finally (finally!) got him potty-trained, he would still smear his shit all over the bathroom (and he would stay in there for hours–we only had one bathroom). He fought wearing clothes.   Late at night, he’d eat all the food in the house–all of it.

I could go on and on.  Suffice it to say that living with YoungerBro was not easy.  And there are more intangible things that YoungerBro deprived us of.   My mom has a career as a successful operating room nurse.  She had to give that up to take care of YoungerBro when we realized he was going to be worse than OlderBro, making us a one income family.   Dad stuck with his factory job and refused other positions because he felt he had to stay in something good and reliable because of YoungerBro, and he’d seen people above him get cut.  We spent a ton of money on treatments and meds for him.    And I sincerely believe that, when the doctor told my mom that the most important thing she could do about her cancer was get rest, YoungerBro unwittingly deprived her of it.  I have no doubt that his compulsions resulted in an early death for my mom.

We were lucky.  As YoungerBro got older, we eventually found (with the help of wonderful medical professionals) a cocktail of meds that eased up a lot of his compulsions.  And we didn’t even have it that bad compared to others.  Take a look at “Planet Autism”, an article written for Salon.com by Scot Sea about caring for his severely autistic daughter.  Reading that took my breath away, and at the same time gave me a sense of relief, because someone finally had said out loud what I suspect many a parent of severely disabled children feels in their souls: that having a severely disabled child is not a blessing.  For both the caregivers and the severely disabled, it’s hell.

When I first got online back in the ’90s, I lurked several disability websites.  I thought I could find a disability support group for siblings, something to help me cope.  What I found–and what I have found since–were groups that fell into distinct categories:

1. The “Disability is a Blessing” people  (a.k.a the “Warm Fuzzy” group).  These groups were invariably filled with the mothers (and, sometimes, the fathers) of younger to very young disabled children.  Sometimes the  disabilities were minor, but not always.
2. The “Disability Isn’t the Problem, Society’s Attitude Towards Disability Is the Problem”  people (a.k.a. the “Disabilidentity” group).  These groups were typically made up of the disabled themselves, ranging from minor to severe physical disabilities, and minor mental disabilities (mental illnesses that were under control via various therapies, high-functioning autism, etc.).
3. The Disability Advocates, who are focused on helping the disabled via legislation and funding, raising awareness, and educating people about disability.  They represent the widest spectrum, but again, the voices of the severely mentally disabled aren’t typically represented.  Still, that’s better than the other two groups, and I consider them separate and distinct from them.

I have very little patience with the first two groups. Let me talk about the first one.

The Warm Fuzzies.  God.  I feel for them, I do, but…God.   This group, in my decidedly non-scientific survey, are usually the parents of disabled children.  Like nearly any parent, they love their child (or children).  But they adopt a strict no-one-had-better-say-anything-bad-about-my-child’s-disability-because-that-means-you’re-rejecting-my-child! attitude. When they hear someone  suggest that the disability is unfortunate, they go off.   These folks go so far as to swear up and down that if a treatment or cure came along for Little Precious, they would refuse it, because that would fundamentally change who their child is.

And they are the standard bearers of the “My child’s disability is a blessing” brigade.  They go on about how the disability has made them better parents, better people, even, (as if, you know, the only reason the child exists is for their improvement).  They learn so much from them!  Heck, I read about one woman who actually performed a fist-pump when the doctor confirmed that her child had Down Syndrome, and was praised for her positivity.

First off, I don’t thing anyone should not be proud of their disabled child.   You should be proud of everything and anything the child accomplishes.

But at the same time…I can’t help but shake my head a little.  Because I know what’s coming.

Wait, that’s not fair.  I don’t know what’s coming, at least, not 100%.  But I do know this.  Most of the Warm Fuzzies are parents of very young children, children who–and I’m just going to say it–are in the “cute” phase with their disabilities.   They aren’t teenagers, navigating the shark pits of puberty and high school.  They aren’t adults, still shitting the bed as their parents grow older.

(And quite a few of those parents are older.  I recall a poster on Metafilter stating that she volunteered for a while at a day facility for young disabled adults, and she commented to the facilities director how great it that so many grandparents came every day to visit the clients.  The director replied that those weren’t the grandparents–they were the parents).

Their kid will grow up (assuming a non-degenerative diagnosis), and guaranteed, the cuteness will vanish.  It will be a lot harder to be patient when their child is going through puberty, or is thirty-four and still in diapers.  It’s possible (depending on the disability) that the child’s disabilities will get worse, not better (for example, Down’s Syndrome kids have Alzheimer’s to look forward to if they make it to their forties.  Some parents of autistic children report increased aggression as the child gets older).  They will feel so, so tired, and there will be no relief in sight.

State assistance, you say? Funding has been cut for all disability services, with more cuts threatened all the time due to the economy. And getting the services that do exist (which are a pittance) is a full-time job in and of itself–my mother probably spent a week out of every month at the Medicare and Medicaid office to get my sibs the money and services they were entitled to. Then there were the constant battles with the schools to get them the education that the law said they were entitled to–there’s another week out of the month gone. Basically, when you’re the parent of a disabled child, once you get a diagnosis, you can’t just be a parent. You have to be a case manager, an education specialist, a medical specialist, sometimes a legal specialist. It’s overwhelming to navigate the system in order to advocate for your child, but it’s got to be done, and it’s your job to do it.

Then there’s emotional support. The divorce rate in the US among parents with disabled kids is higher than the general population–nearly twice as high with certain disorders (it will vary with the disorder). Parents with disabled children have lower rates of social participation than parents without a disabled child. Peer activities and cognitive development scores are lower for siblings of children with a disability (here).  Disability is isolating, and not just for the disabled child.

And financially? I already talked about the low amount of money from the US government (Medicare and SSI). In addition to the reduction in household income due to divorce, the mother of a disabled child usually doesn’t work outside of the home and relies on public assistance. Disability in a child can also lead to a reduction in the father’s work hours. Child care for a disabled child is generally more expensive, and out-of-pocket costs of medical care and other services are frequently enormous. Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. In every U.S. state, the poverty rate is higher among families with members with a disability than among families without (according to the 2000 census).

(The research for the preceding statements is summed up here).

In short, having a disabled child is extremely stressful in a  lot of ways, many of which I seriously doubt the Warm Fuzzies have considered when they first decide to have their child.   They haven’t considered that the disability may cause divorce, or negatively affect their careers, or any normal kids they may have, or their long-term finances.   The challenges ahead are gruesome, and they are never-ending.  Many parents are up to those challenges.  Many more parents only think that they are.

There’s a statistic that’s very scary to a lot of parents of Down’s Syndrome children: that ninety percent of American parents choose to abort once they find out that the fetus likely has DS.  They’re horrified, of course, and some are even organizing to convince people that giving birth to a Down’s Syndrome child is a good thing.

Given the challenges I’ve listed above, can anyone (at least, anyone not pro-life) really, truly blame them?

One’s ability to cope with a given situation is not indicative of another person’s ability to cope.  Don’t believe me?  Spend a little time looking at the statistics concerning the abuse of disabled adults and children, and how many of the abusers are family members.  The results will turn your stomach.

Another point.  Most people have not seen or spent time with persons with severe cognitive disabilities.  They’ve not seen severe autism, or severe Down’s Syndrome, or the severe end of the spectrum for a lot of mental and physical disabilities.

I have.  It ain’t pretty.

The reason so few people see them is because those children and adults rarely go about in public due to their medical needs.  They require 24/7  medical care their entire lives.  (Got the money for that?  Didn’t think so).   Their parents have no choice but to institutionalize them in places where there are doctors and nurses available all the time.

I wish that every Warm Fuzzy could spend a few days in facilities like that, and witness what can happen when the human body and brain get seriously fucked.  Not because I want them to scare them about their own disabled child, but because I want them to understand that those of us who are glad that we don’t have disabled children aren’t judging them.  We’re choosing not to take even the slightest chance that we will end up with a child that is that severely disabled.

Warm Fuzzies often lament that others don’t see their children the way they do.  That’s very true, no question.  Others don’t see what they love.  But I submit that the Warm Fuzzies also don’t see their children the way that others do, either.  They cannot–or will not, more likely–see what others fear: the possibility that they could have a child that disabled, or far worse.

I believe that Warm Fuzzies, on the other hand,  maintain a carefully crafted denial-ism about some of the problems that disability brings, or only talk amongst themselves about those problems, and for a number of reasons:

1. They don’t want people judging their choices.  As prospective parents, they don’t want to be judged for choosing not to abort (in the cases of some disabilities).  As parents managing a disabled child, they don’t want to be judged for such decisions as to not institutionalize (or to institutionalize).
2. They have to embrace the good, because they have no other choice.

Daniel Gilbert, a psychology professor at Harvard, has studied happiness (among other things), including the fact that having children–normal ones–doesn’t necessarily make us happy.   He writes on his blog:

“…when something makes us happy we are willing to pay a lot for it…But that process can work in reverse: when we pay a lot for something, we assume it makes us happy, which is why we swear to the wonders of bottled water and Armani socks. The compulsion to care for our children was long ago written into our DNA, so we toil and sweat, lose sleep and hair, play nurse, housekeeper, chauffeur and cook… Given the high price we pay, it isn’t surprising that we rationalize those costs and conclude that our children must be repaying us with happiness.

“[...]although most of us think of heroin as a source of human misery, shooting heroin doesn’t actually make people feel miserable. It makes them feel really, really good—so good, in fact, that it crowds out every other source of pleasure. Family, friends, work, play, food, sex—none can compete with the narcotic experience; hence all fall by the wayside. The analogy to children is all too clear. Even if their company were an unremitting pleasure, the fact that they require so much company means that other sources of pleasure will all but disappear…We believe our children are our greatest joy, and we’re absolutely right. When you have one joy, it’s bound to be the greatest.” (emphasis mine)

I think that, to a large extent, parents of disabled children know that the joys of raising their child will drive away other joys, and rarely–if ever–provide joy themselves.  So they not only take their joys wherever they can, they aggressively convince themselves that the bad things about the disability are joys, too.  It’s the only way to survive, really.   They’re paying so much to raise this child–financially, emotionally, socially–that they have no choice but to call something bad, good.

I can understand all of that, really.  What I don’t understand is the urge to act all “YAAAAAY DISABILITY”!  It is possible to love and adore your child, while despising his disability.

I’ll address that last point in my next post.  But for now, two things:

There’s an essay by a woman named Emily Perl Kingsley, who used to write for the children’s show Sesame Street, called “Welcome To Holland“.  She wrote it for parents coming to grips with their newborn’s disability.  In it, she posits that giving birth to a child with an unexpected disability is like accidentally getting your plane re-routed to Holland after eagerly planning for a lifetime to visit Italy.

Over the years, many parents have taken great comfort in Kingsley’s essay. The first time I read that essay, I thought, “You’ve got to be shitting me”.  Seriously?  Getting routed from one cool European country to another is like giving birth to a disabled child?  This essay is the epitome of Warm Fuzzie-ism, if you ask me.

I was glad to discover recently that there are parents of disabled children who had similar reactions:

• Welcome To Beirut by Susan F. Rzucidlo
• Amsterdam International  by Dana Nieder (Emily Kingsley actually responded to this one)
• Holland, Schmolland by Laura Kreuger Crawford

Read all of them.  They are the cure for Warm Fuzz-ism.

A book came out a few years ago called “An Uncertain Inheritance: Writers on Caring For Family“, edited by Nell Casey.  It contains essays by writers who’ve had to care for a family member with a serious illness–Alzheimer’s, cancer, etc., Scot Sea’s essay is in it–and how that can lead to isolation, rage, and despair.

The tl;dr version is that Amelia, a three year old child, was born with Wolf-Hirschorn Syndrome. This is a rare genetic condition that causes physical as well as intellectual developmental delays and disabilities.  She is in need of a kidney transplant, and the Children’s Hospital of Phladelphia has determined that she’s ineligible for one.  What makes this a unique story (or maybe not, we’ll get into that) is that Amelia’s mother is claiming that a doctor and a social worker at CHoP told her that Amelia was not eligible to receive a transplant because she’s mentally retarded.

Chrissy Rivera posted her story online on January 12th and it went viral among the disability rights activist blogs all this past weekend (which is how I learned about it). She and her husband were contact by CHoP last Sunday to come in for another meeting about a transplant for Amelia this week, so we’ll see.

There are so many issues tied up in this story that it’s difficult to analyze, but I’m going to give it a try.

1) First of all, it’s unfortunate that the doctor and the social worker didn’t appear to have any training on delivering bad news to parents of an ill child. The doctor might be excused because–from what I can glean from Chrissy Rivera’s article–English may not have been his first language. I have no idea what was going on with that social worker (and if the account of her actions is even remotely accurate, I would question whether she should stay employed by CHoP).

I’ve heard a lot of anecdotal evidence that surgeons in particular don’t receive training in communication with patients.  This is an issue that medical schools have been striving to correct, but apparently they still have a long way to go.  The importance of bedside manner, particularly when dealing with unhappy news, can go a long way towards preventing problems from escalating.

2) I suspect that what the doctor and social worker meant to communicate to the Riveras wasn’t “Your daughter’s not eligible because she’s mentally retarded” but “Your daughter’s not eligible because her Wolf-Hirschorn Syndrome has resulted in medically significant brain damage and/or compromised organs, which already mean she’s looking at a significant reduction in life expectancy. When that’s combined with the risks inherent in transplant surgery plus the dangers of the necessary follow-up treatments, she’s such a high risk that we’ll probably kill her in our attempt to save her life.”  However, apparently that’s not what came out.

We’ll never know for sure, really. In her blog post, Chrissy Rivera mentioned that things got “hazy” while she was talking to the doctor.  Author Lisa Belkin spent three years observing how hospital ethic boards work.  She wasn’t present at the conversation between the Riveras and the CHoP staff, but she has been present at other hospitals when doctors have had to give this kind of bad news to parents.  It’s not unusual, she says, for the parent to remember hearing from the doctors something that’s at a total variance with what was captured on her recorder.

It’s entirely possible that Ms. Rivera was so distraught from hearing that the hospital wouldn’t perform a potentially live-saving procedure on her daughter that she didn’t hear the doctor and social worker correctly, or took what they said in the worst possible light.  Again, the doctor might have been disadvantaged in explaining things because of English not being his first language.

This incident with Amelia Rivera touches on one of the core issues that disability rights activists fight: the presumption by the able-bodied that being disabled makes life not worth living, or at least makes the lives of people with disabilities less gratifying and valuable than those of non-disabled people. It’s usually couched in language of “she’s suffering because of her disability” or “how could someone want to live like that”.  It’s very pervasive, and it affects how disabled people of all sorts receive medical care.

Even moreso, it hits every parent or caregiver of disabled children right where they live, because when they see a case like Amelia Rivera’s, the first thought that pops into their heads is “What if that were my child?”

Hearing such news is distressing under the best of circumstances, but hearing such news when the patient is your disabled child is not just stressful, but hurtful. Because ultimately, you are going to conflate the news with the idea that this person or organization doesn’t think your child should continue to live because of his disability.

For a parent of a child with disabilities, it’s impossible not to get emotional hearing about a situation like Amelia’s.  You spend so much time trying to help your kid, trying to see the positive in their situation, looking past their disabilities, that when ugly reality rears its head and you have to confront a situation where his diabilities stand in the way of what you want–and you might not be able to push past them–that you lash out at everyone around you.

The Riveras obviously love their daughter.  They are grasping at straws trying to save Amelia’s life.  It’s hurtful to hear that a hospital, of all places, is refusing to do something about it.  I can’t help but wonder if, in between Ms. Rivera’s anxiety over being told ‘no’, and the doctor’s possible lack of command of English, if she’s simply chose to hear that this was a case of prejudice against her daughter rather than one of careful consideration of the medical realities brought on by Ameila’s W-H Syndrome.

3) And speaking of medical realities: I’m sure the hospital’s ethics board considered several factors:

a) A third of people with W-H die before the age of two.  Some survive into early adulthood, but that’s still pretty rare (Amelia’s three years old). 

The 4P-Support Group posted on HuffPo in the comment section:

There have been great advances in medical care and treatments that have enabled our kids to live longer, happier lives. There is no reason to expect a child with WHS will live a shorter life than the rest of the population based solely on having this genetic condition. Without the presence of inoperable congenital defects and other untreatabl­e conditions­, and with routine, proactive and extraordin­ary care by their primary physician and specialist­s our children are now living much longer than originally predicted in the 60’s and 70’s. The 4p-Support Group has knowledge of over 570 children with 4p-/WHS since it was formed over 20 years ago, of which 130 have a date of birth in 1990 or earlier. 99% of these are in the US alone. There are many WHS heroes; for instance someone who learned to walk at the age of 18 and someone who is 62 years old! Mia Rivera is a WHS hero! We have some sayings in our group; “never say never”, “let your child show you what they can do” and “everythin­g is in their own timing”.

While I appreciate advocacy from the people who actually live with these disorders, the above strikes me as management by exception.  130 have made it to age twenty or older with this disorder?  That’s an extremely low percentage compared to the general population.  I have no idea how many children with W-H Syndrome were born in 1990, but I can’t imagine that this number is truly significant, simply because the author of the post would have said so (“There were 150 children with WHS born in 1990, and twenty years later 130 of them are alive and living great lives!”).

Parents and caregivers of the disabled often put the best possible spin on information about the disability.  It’s been interesting watching this play out in the disabled rights blogosphere, because the parents have been screaming about how the hospital is clearly coming at this with a horribly skewed perspective–without noting that as parents of disabled children, their perspective are incredibily skewed, as well.

I’m digressing, so I’ll just note that I’ll talk about that–and other disability issues–in another post.  To continue….

b) Amelia’s W-H creates medically significant issues that could threaten her life if the hospital tries to try to do a transplant on her. Amelia’s undersized for three years old, which makes taking an organ from a living adult donor impossible–it would have to come from a young child.  The Riveras claim that they plan to have a donor come from the family, but I’m at a loss to explain how they’ll persuade another parent to give up a kidney from their young child, even a relative.  She’s got brain damage that makes her prone to seizures, which makes certain necessary post-transplant medications exceedingly dangerous for her.  Her movement is restricted, which put her at risk for infection.  There would be enormous challenges for a normal person following a kidney transplant; for a child with W-H–even one who receives excellent care from her parents, like Amelia–they are likely insurmountable.

It’s a horrible situation all the way around. I feel for the Riveras. I can’t imagine their pain.

But question of whether or not a patient is a suitable candidate for a transplant is a valid one. Even a best-case-scenario requires that the other hallmarks of Amelia’s syndrome don’t worsen, and that’s highly unlikely. 

I don’t know how this situation could be resolved with everyone being happy. If Amelia doesn’t get the transplant, she dies, and the Riveras will likely blame–perhaps even sue–the hospital. If Amelia gets the transplant and dies (which seems probable, given what we know), it’s possible that the Riveras will still blame–and perhaps even sue–the hospital.

In the end, though, I truly believe that–despite how the situation was fumbled by the doctor and the social worker–CHoP isn’t denying Amelia a transplant because she’s mentally retarded. They’re denying it because she’s got a syndrome that shortens her life, and a transplant will very probably shorten it even more. 

Because of Amelia’s medical history and her syndrome, just undergoing a transplant procedure could very likely be a death sentence.  That alone is reason enough not to give Amelia Rivera a transplant.

Seriously, How Hard Is It To Understand?

First of all, I SO wish I could be out there at Occupy Wall Street, (or any Occupy _______, really). But, alas, as part of the 99%, one who’s had to deal with crushing financial issues in the last two years, I have to be at work.  I’m with them in spirit, if not in fact.

That said: can I just say how glad I am that, for once, we have a pretty cohesive protest from the Left?   I remember a conversation held on the off-topic forums of RPG.net about how street protests may or may not work, and how especially the Left tends to let itself get off message really fast–you start out organizing an anti-war protest, and you wind up attracting people who insist that ”Free Mumia” also be part of the message.

OWS doesn’t seem to have that problem, so I really don’t understand  the people who’re saying that the movement’s unwilling to put out a coherent platform of demands.   Anyone who thinks there is a lack of focus isn’t paying attention. Maybe the discontent is a little broad, but the problems many of us face today aren’t as simple as “end the Vietnam War.” It’s obvious that many are unhappy about:

• US corporate greed
• corporation and big business influence in government policy
• the bank bailout
• unemployment
• laws which favor the wealthy and corporations
• and the general injustice of the American financial system.

And a list of issues has been released by the New York City General Assembly, the loose leadership of OWS.  Note that it is not a list of demands, but it does articulate what the problem is. 

And can I just say how brilliant a slogan “The 99 Percent” is? It takes a complex and immense amount of corruption, injustice, cynicism, raw greed and gives it vivid, accurate form.

Occupy Wall Street’s focus seems crystal-clear to me: reduce the influence of corporate finance on the Republic.  I articulate it as “Wall Street Got Bailed Out, and We Got Sold Out”, myself.  But I guess the Wall Street protestors just lack the razor-sharp focus and carefully articulated demands that the Tea Party has. Or something.

I’m starting to think don’t think a lot of journalists aren’t smart enough to figure it out.  Not all of them, mind you.  Just look at this editorial from the New York Times:

…The message — and the solutions — should be obvious to anyone who has been paying attention since the economy went into a recession that continues to sock the middle class while the rich have recovered and prospered. The problem is that no one in Washington has been listening.  At this point, protest is the message: income inequality is grinding down that middle class, increasing the ranks of the poor, and threatening to create a permanent underclass of able, willing but jobless people….

And yet we continued to hear from many in the Mainstream Media that they’re unsure what the message is.  (The take on the Right, of course, is that Occupy Wall Street is the same old riff-raff of leftist anarchists, unlike the grassroots conservative Tea Party.)  Really?

Some years ago there was a letter posted to the old Romenesko forums (Poynter has since re-organized the site, and so the letter is lost to me) by a moderately conservative journalist who was leaving her job in pursuit of greener pastures.  She wrote the letter as an explanation of why she was a conservative in a field overrun with liberals. 

I wish I had the letter, because she was quite articulate, but basically she said that when she grew up, journalism was a blue-collar job.  You didn’t go to college or grad school to learn how to be a journalist.  Back then, you weren’t a journalist, you were a reporter.   You took some writing samples into the local paper, got the job on the strength of those, and then hit the streets hunting down the news.  You got a reporter’s salary, which meant you lived in the same neighborhoods as firemen and police officers and factory workers who made similar money.  In many instances you shared the same values, which were typically moderate to conservative. 

But somewhere along the line, that changed. People stopped being reporters and becames journalists.  Journalism began to be offered as a field of study at universities, which meant that salaries for journalists increased.  Soon news outlets began to require a journalism degree to interview for their entry-level jobs.  That meant journalism shifted from being a job that talented people from any walk of life could do, to being a job that only talented people who could also afford a college education were able to do.  That, in turn,  meant an inevitable shift to journalists coming from wealthier, white-collar neighborhoods, which tend towards liberal politics. 

I thought the letter-writer made an excellent point.  What’s more, I think her point isn’t just about the liberal-conservative divide in journalism.  I think that since many journalists in media gatekeeper positions make really good salaries (and have for decades), they’re disconnected from the financial struggles of the people that OWS represent.  They don’t have to worry about paying for child care, or making their rent, or hoping that they can juggle two jobs just to make it.  They don’t live next to people who do.  And so they don’t understand the viewpoint of people living that way.  Worse yet, they aren’t smart enough to realize it.

Not all journalists are rolling in it, of course.  I’ve posted before about  how entry-level journalist’s salaries have fallen to criminal levels in traditional media outlets.  But the ones who make the decisions on what stories will get reported, and how? They’re usually doing okay for themselves.  And they’re the ones who just don’t get it.

One journalist who does get it is the redoubtable Margot Adler of NPR News.  She had this to say about OWS versus past protests (emphasis mine):

ADLER: Okay, so in 1983, I’m covering the Seneca Women’s Encampment for Peace and Justice. It’s in Upstate New York. It’s a group of very, very radical women who have encamped, very much like Greenham Common. They basically are camping out, and they want to protest militarism.

And they’re doing all these things that were sort of these cultural ’70s civil disobedience things. So there was street theater, and there was chanting, and they were painting themselves green and black, and they were having die-ins. And I spent three days with these women, and it felt very interesting and very transformative, and very unusual, you know, and I felt really actually that a lot of stuff was happening.

And then there was this big march. And the big march was on July 4th, and it was on the military base, and I got into a little skirt and a blouse, and I went and stood with the townspeople and watched this march that I had been living with for three days.

And as they marched to the military base and to the town, I realized that from the point of view of the townspeople that I was among, they looked totally crazy. They looked like total – you know, I mean, they really looked weird, they looked bizarre. There was no understanding. They were painted black and green. They looked really crazy.

Now translate that to Wall Street, Occupy Wall Street, and what’s different and what I really think is interesting about Occupy Wall Street, is that it’s porous. So what you have in Occupy Wall Street is you have all these people milling around and hanging out, and you have free food, and you have some of the Wall Street guys in their suits and ties coming in and eating the free lunch and talking with the people.

And so you actually have more of an encounter that’s actually changing, where those two sides sort of come together and see each other…And so I’m beginning to think that maybe this whole notion that oh, let’s have a goal, let’s have a focus, maybe that’s not the idea. Maybe we’re really – you know, they’re really trying to say let’s change the conversation.

She adds:

ADLER: …what was interesting to me was I thought there was more focus than I thought there would be. If you looked around, the signs that you saw were all very much focused on the economy. There was – they were very much, you know, end corporate greed, end, you know, basically the 99 percent.

They weren’t – you know, very often you’ll go to a kind of traditional left demonstration, and there’ll be 60,000 different causes. And I even saw a very weird thing while I was there…So Peter Yarrow comes down there, from Peter, Paul & Mary, and he gets up on the stage, and he starts singing, and he also starts talking. And he is – in his talk, what I heard was the laundry list of every left cause. So he’s talking about blacks in prison, he’s talking about militarism, he’s talking …And I realized it was completely different from what I was actually experiencing, that in a sense I thought he was off the mark.

Thanks, Ms. Adler, for noticing the difference.   I hear that some of the old progressives like Pete Seeger and Arlo Guthrie are showing up at Occupy Wall Street, too.  Let’s hope that they hear Margot’s take on Peter Yarrow and stay on message, and don’t try to drag in every cause under the sun.

Occupy Wall Street has a coordinated meeting planned for July of 2012.  I really, really hope that this movement finds its legs, and becomes the Left’s answer to the Tea Party.  From what I can tell ,many of the protestors are young people who realize their economic future is bleak, thanks to mismanagement and outright fraud (packaging bad home loan debt so that any profit is privatized for banks and any loss is made public for homeowners and taxpayers in general, to name just one thing for which many bankers should be rotting in jails as we speak). 

In the meantime:

Executive Paywatch : And I hasten to point out – OWS supporters aren’t mad that a CEO makes hundreds of dollars for every one dollar that an employee makes.  They’re mad because, while doing so, the CEO and his management staff are cutting salaries and benefits to the employee.   Even better, when executives make decisions that actively hurt a company (like at Gannett, or Bank of America, or any number of companies–seriously, my career goal at one point was to get fired by Disney), they get paid big bonuses to be shown the door.  Think that would happen if you got fired?

The Dodd-Frank Act requires publicly-held companies to make the ratio public — CEO-to-average pay within the company. The House is trying to repeal this part of the Act, as well as other parts.  Gee, I wonder why?

Have We Got A Site For You!

The model is simple: an artist has a project that she wants to do (say, a pivot pad for an iPad or Kindle) and offers certain incentives depending on the amount you donate.  And people donate.  It’s a little like the public broadcasting fundraising model, only not tax-deductible.

Crowdfunding has been a major boon to several indie RPG designers.   I spoke to some  game designers on my podcast All Games Considered (episode here) and they were really enthusiastic about the concept.   PurplePawn.com, a gaming news site,  also has a very informative article about How To Succeed Or Fail At Kickstarter.   I suggest you check out both if you’re interested in understanding how Kickstarter is affecting the tabletop gaming hobby.

There’s also a host of imitator sites, such as IndieGoGo, MicroVentures, and IgnitionDeck.   I’ve become a total addict of Kickstarter, because even though I haven’t had the money to donate to too many projects, I love looking at the projects that are up on the site.  So much creativity, especially in the Games section!  I’ve backed a couple of RPG projects, and I’m eyeing some board game projects.

Kickstarter has a specific sort of project that they’ll approve for the site:  no charities, for example, no cause awareness fundraising, no “fund my life” fundraising (raising funds to pay tuition, for example), that sort of thing.  I’m certainly not against charitable fundraising, but that’s not what I’m coming to crowdsourced funding site for.  The projects that go up on Kickstarter, I feel, have been held to a certain standard,  which I like.

But I have to confess, though: some of the projects on the assorted sites make me scratch my head.  Kickstarter has one project that, honest to goodness, I don’t see why it was approved, This Batman Life.   Basically, what you’re funding is a self-improvement project: one guy goes around the country taking meditation, martial arts, and survival training classes–basically acquiring some of the skills that Batman has.  He takes a bunch of photos and blogs about his experience.  In return for supporting his project, you get assorted Batman prints, or, at the higher levels, you can accompany him to one of the classes he takes.

Seriously?  This got approved? He wrote a hell of a sales pitch, to be sure, but in the end, it’s “please pay for my road-trip vacation”.

This is similar to another project up on IndieGoGo, Pilgrimage America.   Once again, a writer who wants people to fund his vacation and idea for a book.   No significant incentives, beyond “you can join me at some stage of the trip.”

IndieGoGo is full of this sort of thing, which is why I tend to look askance at the site.  I don’t think they do any sort of screening of the projects.  For the most part, their projects look pretty good, but occasionally you get things like “help us have a baby“, “send my dog to the beach“, and  ”give me seed money to use on gambling sites so I can gamble my way to a million dollars“.

Granted, I think many of these projects are geared towards a smaller audience of family and friends (I think that behind the “help us have a baby” project, as well as what’s behind a large portion of the projects in IndieGoGo’s Health section).  Which is fine, I suppose, and if some stranger is moved to throw a little money their way, so be it.   But after the Kickstarter model, there’s really no excuse for allowing these clearly money-grabby “projects”.

Anyway, if you haven’t checked out Kickstarter and IndieGoGo, and you’re looking for a way to directly support artists and other innovators–and especially if you’re looking to support indie RPG and card/board game designers–give them a look!

Subject: What do you think ?

A friend sent this to me & I have to say I agree w/her.  See what you
think.

To insure that Americans never offend anyone, particularly fanatics
intent on killing Americans, and anyone else who happens to be in the
vicinity,  airport screeners will not be allowed to profile people. They will
continue  random searches of 80-year-old women, little kids, airline pilots with
proper identification, Secret Service agents who are members of the President’s
security detail, 85-year old Congressmen with metal hips and Medal of
Honor winning former Governors.

So pause a moment and take the following test:

In 1972 at the Munich Olympics, athletes were kidnapped and massacred by:
a. Olga Corbutt
b. Sitting Bull
c. Arnold Schwartzeneger
d. Muslim male extremists mostly between the ages of 17 and 40

In 1979, the U.S. embassy in Iran was taken over by:
a. Lost Norwegians
b. Elvis
c. A tour bus full of 80-year-old women
d. Muslim male extremists mostly between the ages of 17 and 40

During the 1980′s a number of Americans were kidnapped in Lebanon by:
a. John Dillinger
b. The King of Sweden
c. The Boy Scouts
d. Muslim male extremists mostly between the ages of 17 and 40

In 1983, the U.S. Marine barracks in Beirut was blown up by:
a. A pizza delivery boy
b. Pee Wee Herman
c. Geraldo Rivera making up for a slow news day
d. Muslim male extremists mostly between the ages of 17 and 40.

In 1985 the cruise ship Achille Lauro was hijacked and a 70 year old
American passenger was murdered in his wheelchair and thrown overboard by:
a. The Smurfs
b. Davy Jones
c. The Little Mermaid
d. Muslim male extremists mostly between the ages of 17 and 40.

In 1985 TWA flight 847 was hijacked at Athens, and a U.S. Navy diver was
murdered by:
a. Captain Kid
b. Charles Lindberg
c. Mother Teresa
d. Muslim male extremists mostly between the ages of 17 and 40

In 1988, Pan Am Flight 103 was bombed by:
a. Scooby Doo
b. The Tooth Fairy
c. Butch Cassidy and The Sundance Kid who had a few sticks of dynamite
left over from the train job
d. Muslim male extremists mostly between the ages of 17 and 40

In 1993 the World Trade Center was bombed the first time by:
a. Richard Simmons
b. Grandma Moses
c. Michael Jordan
d. Muslim male extremists mostly between the ages of 17 and 40

In 1998, the U.S. embassies in Kenya and Tanzania were bombed by:
a. Mr. Rogers
b. Hillary, to distract attention from Wild Bill’s women problems
c. The World Wrestling Federation to promote its next villain:
c. “Mustapha the Merciless”
d. Muslim male extremists mostly between the ages of 17 and 40

On 9/11/01, four airliners were hijacked and destroyed and thousands of
people, not just Americans, were murdered by:
a. Bugs Bunny, Wiley E. Coyote, Daffy Duck and Elmer Fudd
b. The Supreme Court of Florida
c. Mr. Bean
d. Muslim male extremists mostly between the ages of 17 and 40

In 2002 the United States and its allies launched a war in Afghanistan
against:
a. Enron
b. The Lutheran Church
c. The NFL
d. Muslim male extremists mostly between the ages of 17 and 40

In 2002 reporter Daniel Pearl was kidnapped and murdered by:
a. Bonny and Clyde
b. Captain Kangaroo
c. Billy Graham
d. Muslim male extremists mostly between the ages of 17 and 40

Nope, no patterns anywhere to justify profiling!

In the  archive, I found my response:

The worst act of terrorism committed on American soil prior to 9/11 was by Timothy McVeigh,  a young white male (Irish Catholic).

I sneaked her into the office last Christmas. Was reprimanded, but it was SO worth it!

In October of last year, a co-worker came into the office and asked jokingly if I wanted a dog. I explained, in all seriousness, that I was in the market for a dog–I’d bought a house with a fenced-in back yard, and had been pondering it. Pam (that’s my co-worker) said she had found a cocker spaniel wandering her farm with an injury, and taken it to the vet to get fixed up and to get its shots.

I said “Lemme think about it.” Pam nodded, then ran back to her desk and emailed me pictures of the dog.

I said I’d take it.

Lily will have been with me one whole year in October, and I have to say she’s been wonderful. She’s just the sweetest doggy in the world, loving and affectionate…although a little confused about why life treated her this way (she had clearly been taken care of when Pam found her; we suspect a pet-dumping occurred). She keeps me fabulous company, loves to visit my dad and the other nursing home residents, loves my brothers and extended family, and in general is just a SCHWEETIE DAWG!!!

Think I shall throw a birthday party in Lily’s honor. Wine, champagne, some really nice appetizers, and doggie treats (of course).

This picture captures exactly my mood since last Friday at about 5pm

So the drama that I’ve been alluding to, which has kept me from posting on this blog for a while? It finally ended last Friday.

The tl;dr version is this: I’ve been trying to sell thirteen acres of land to the City of Berea since 2009. The City has wanted to buy it, because they need to put a road through there. The offered $55,000, and I agreed. Because I’m legal guardian for my entire family (dad with dementia, two brothers with severe autism), there were several legal hurdles that I had to jump through in order to do so. It took about a year. The day before the sale was to close, my attorney informed me that the deed search turned up someone else’s name on 5 acres of the land. It turned out that when my Grandpa bought the land forty-odd years ago from the heirs of someone, one of the heirs was underage at the time of the sale, and his mother refused to sign for him. So we literally had to start over, which added another fourteen months to the process. In the meantime, my dad’s estate ran out of money, and I had to cover costs (mortgage, utilities, property taxes, etc.). I’d already borrowed $15,000 from the local bank so the nursing home wouldn’t evict him, and it was contingent on the land’s sale. Then other bills came through–pharmacy bills, ambulance bills, and other medical bills that my dad incurred during his stay. Between those, the mortgage, and the loan, I was nearly $35,000 in debt. I’ve never had more than $8,000 debt, not counting the house I bought.

I was seriously looking at bankruptcy when I finally got notice that the court approved the sale and payment of debt. Last Friday I got the first of two payments (there was a snafu at the Mayor’s office, nothing major, but it delayed payment of about $16,000 by about a week) and was able to pay off the loan, the mortgage, the nursing home, and assorted other bills, plus get some of my money back. There’s one other major bill that needs payment when the $16,000 comes in, and then the rest will go to the nursing home.

I’m so relieved! It’s a wonder I didn’t develop a stress ulcer from all of this. I’ve had a hell of an emotional time, and been late on several of my own bills because of this. Now it’s over, and I can begin re-building the tattered remains of my savings account.

1) My dad’s thirteen acres is still not sold to the city of Berea. Long story short, deed search turned up that five of the thirteen acres is still in the name of someone else. Plus, I’m legal guardian for the entire family, which also complicates things legally (conflict of interest and all that). So this whole sale has been delayed nearly two years.
2) The delay has consumed my savings as I cover Dad’s bills, driven me to debt, and basically destroyed me financially.
3) If this land sale doesn’t happen in June 2011 –which, I’m being told by my lawyer, really truly is gonna happen–I’m going to have to look at declaring bankruptcy.

I took the day off work today because of a persistent sore throat, and have spent the day reading blogs and listening to Parker and Stone’s Book of Mormon soundtrack online (NPR is streaming it here).

Oh, and I’ve had The History Channel on. Since when the hell did the History Channel become the Conspiracy Channel? Right now there’s a hyper-paranoid show about The Bohemian Grove on the air, stressing the super-secret nature of the place. Except that everyone knows about it. For, like, years. Good Lord…

Anyway…what else? Oh, Family Reunion is coming up Memorial Day weekend. And I adopted a cocker spaniel named Lily last fall. Beyond that, I feel like I’m in a race against time against this land sale. Dear God, let it happen soon. I can’t survive financially much longer.

In the meantime, my podcast ALL GAMES CONSIDERED has been nominated for a second time for an ENnie! Please go vote for us here:

http://www.ennie-awards.com/voting/voting.asp

Automatically shipped by LoudTwitter