Sunday, March 30, 2008

Evidence of Idiocy

As if she hasn't done enough damage, I ran across this on another list that I am on:

FOR WORLD AUTISM DAY: APRIL 2 – Jenny McCarthy & David Kirby for a full

Wednesday, April 2

On World Autism Day, the controversy over vaccines! Do they contribute
to autism, or is there a greater risk going without? Actress and mother
of an autistic child, Jenny McCarthy, debates the issue with medical

Now Larry King doesn't strike me as being very balanced on this (he has had Jenny on several times regarding autism). But the one good question he did ask recently was regarding adult autistics, to which Jenny responded that she'd never met any. Since King is basically a celebrity junkie and not a journalist I guess I can't blame him for going with B grade celebrities that will boost his ratings.

I guess the only good that might come of this upcoming show is that eventually even people that are not really paying attention will start to get the message that Jenny is a total air head, and has absolutely no science or reason to back up her beliefs.

On Larry King's website:
if you go to the April 2nd show, there is a button where you can submit questions for the guest (I guess it's cheaper to have the audience make up the questions rather than have a researcher). I'm counting on the "medical experts" on the show to carry the factual side regarding vaccines, so I asked

Do you still believe that you are an "Indigo Mom" and your son Evan is a "Crystal Child"? If so, what do you base this on?

I encourage everyone to go there and submit your own questions. I don't even want to comment on Kirby. He seems to have the minimal intelligence necessary to know that he's totally screwed up.

Tuesday, March 25, 2008

Trump Card

photo credit-iboy daniel
creative commons license

Kristina Chew got me thinking today with her post on "Race, Diagnosis, and Identity". In it, she talks about her son Charlie's biracial (Asian/Caucasian) heritage, as well as his other difference, his autism. Kristina also references an article by Peggy Orenstein in the New York Times Magazine called "Mixed Messenger", which discusses Barack Obama's biracial status as a candidate, and being biracial in America today.

When Liz and I were contemplating adoption, we thought long and hard about whether to adopt trans racially or not, which race children we would accept, and what sorts of disabilities we would accept (our children, Buddy Boy and Sweet Pea are biracial African-American/Caucasian). It all sounds so clinical, cold, and calculating, but that's what the adoption process asks of you. You are forced to fill out forms stating what types of children (sex, age, race, disabilities) from what types of parents (drug abusing, smokers, psychiatric issues) you are willing to accept for placement.

I knew that kids who had been adopted often had some issues to work thru regarding having been adopted, and I also knew that kids who had been adopted trans racially sometimes were OK with it, and sometimes felt very much like outsiders amongst their own race when they grew up (and resenting their parents who raised them). I always figured that issues of race would rank high within our family as our kids grew up.

Although our kids are both black and white, I realize that in many places and situations in American the "one drop" rule applies (as long as you have one drop of black blood in you, you are considered black). I knew that even though Liz and I would try to do things to make our kids feel comfortable with their racial identities, that we would most likely not be able to do this fully, and perhaps not even well. And I didn't want to cheat our kids in this very important aspect of their lives. On the other hand, I knew that there are more African-American and biracial African-American children waiting for adoptive parents then there are minority parents waiting to adopt. Thus the choice wasn't necessarily between our kids going to an African-American or biracial couple rather than us, but rather perhaps having to wait much longer to be adopted (or not being placed at all) or being placed with us.

I also worried about how African Americans would accept us as a family. I knew that part of having them grow up being comfortable in their skin would involve us seeking out relationships with African Americans, and I didn't want our kids to see us getting the cold shoulder from black people. This, it turns out, was a totally unfounded fear. Once we adopted our kids an amazing thing happened. I have never felt anything other than acceptance (and even love) from African Americans I know.

So I guess the bottom line was I expected that issues of race would be foremost with us as a family, followed by issues with adoption. Little did I realize when I started this journey as a dad that autism would trump both of those (at least for Buddy Boy). For the last 5 years autism has made my previous concerns regarding race and adoption fall completely to the wayside. I still worry how issues of race will affect my children in the future (as well as my ability to prepare them for the discrimination that they will feel once they leave the protective cocoon of being accompanied by their lily white parents). I also worry specifically how issues of autism and race will interact in the future with Buddy Boy. One of the biggest fears I have involves Buddy Boy having a meltdown as a teenager, and being perceived as an "angry young black man" by a police officer, and being arrested (or worse) because of the interaction of his disability with his race. Orenstein in her article mentions
A few weeks ago, while stuck at the Chicago airport with my 4-year-old daughter, I struck up a conversation with a woman sitting in the gate area. After a time, she looked at my girl — who resembles my Japanese-American husband — commented on her height and asked, “Do you know if her birth parents were tall?”

While I don't think anyone should have to suffer other's assumptions about their children, given the choice of someone assuming Buddy Boy was adopted internationally vs. someone assuming he was a gang banger, I'd take the first assumption in a heartbeat.

But for the last several years learning to deal with all the myriad aspects of Buddy Boy's autism (and more importantly, fighting against a system that wanted to label him as behaviorally disturbed for education purposes rather than autistic) has consumed most of our energy on a day to day basis.

I know that with Sweet Pea we'll still have the issues of race and adoption to deal with. At 5, she's already hit us with the "I wish my skin was white like yours" plea. While I know intellectually that statements like this are to be expected in trans racial adoptions, it sure made me feel inadequate as a parent at the time. Had living in a racially mixed neighborhood, playing with the black kids across the street, having a black babysitter, reading to them about black accomplishments, going to museums, had none of this had any effect? Had we neglected Sweet Pea's development of racial identity because of our time spent trying to get Buddy Boy into (and keeping him from getting kicked out of) a proper educational setting?

I guess in the end there are different trump cards at different times. I also know that part of being a parent is to feel constantly inadequate and not up to the task.

Sunday, March 16, 2008

Don't Help Them-Arrest Them

photo credit-piccadillywilson
creative commons license

If there is anyone left that hasn't read Bev's excellent post "I Am Joe's Functioning Label", I highly encourage you to do so. I think that the phenomenon that she describes, whereby people slap certain labels on others, and then make all sorts of assumptions about them, applies to a story I read.

According to the online version of the Kansas City Star,

The sheriff is recommending charges in the case of a western Kansas woman who sat on her boyfriend’s toilet for so long that her body became stuck to the seat.

Ness County Sheriff Bryan Whipple said Thursday he asked the county attorney to file charges against Kory McFarren for mistreatment of a dependent adult. The county attorney will decide whether any charges are brought. ...

... McFarren, 36, told the sheriff at that time that Babcock had not left the bathroom in two years, although McFarren now contends he’s unsure how long she was in there. Whipple said Thursday that judging by the woman’s condition — she had open sores on which the toilet seat would stick — it appeared she likely sat on the toilet continually for at least a month.

Now I don't know all of the particulars surrounding the story, and I'm certainly in favor of punishing those who abuse the disabled. But some things in this story don't add up to the typical "caretaker abuses person in their care" scenario.

First of all, the person being charged is described as the woman's boyfriend, not her caretaker.

McFarren said she moved around in the bathroom during that time, bathed and changed into clothes he brought her. He brought food and water to her. They had conversations and an otherwise normal relationship — except it all happened in the bathroom.

But the sheriff disputed that account: “She hadn’t bathed for quite some time, I am safe in saying. She obviously was not keeping herself up.”

McFarren said he finally called police Feb. 27 after he became worried because Babcock was acting groggy, as if she didn’t know what was going on around her. ...

...McFarren, who works at an antique store, said he has been taking care of Babcock for the 16 years they have lived together.

So, they live together for 16 years. Since there's no mention in the story, I'm assuming that this is the first time that the authorities are being called to intervene in this couple's life.

Certainly the girlfriend has problems that need attention. But it sounds like the boyfriend and her had some semblance of a healthy relationship, though extremely odd by conventional standards. And it sounds like when the boyfriend perceived there was really trouble, he called for help.

To make matters worse, it sounds like the sheriff doesn't consider the boyfriend to possess full capacity

“The unfortunate thing is this truly is a case of two people, in my opinion, with diminished mental capacity,” Whipple said.

So why did the sheriff want to press charges?

He (McFarren) insisted that he tried to coax her out of the bathroom every day.

“And her reply would be, ‘Maybe tomorrow,’ ” Whipple said.

OK, so they live together for 16 years without having any obvious problems. Both parties have some issues, and boyfriend exercises some poor judgement in when to seek assistance for his girlfriend (though there is no contention that she wanted any outside help). Since McFarren (the boyfriend) holds down a job, he is assumed to be able to fully make all decisions that not only affect him, but also another adult.

And the sheriff comes in and sees something which he considers too weird, and wants to press charges.

Doesn't the county have any psychiatric social workers?

Addendum-I missed the fact that Casdok had already blogged about this. Please see here for her take on this story.

Friday, March 14, 2008


Sometimes things just happen.

I'm sure that the New York Democratic Party never envisioned Governor Eliot Spitzer resigning, which means David Paterson (the current Lieutenant Governor) takes over as the Governor of New York State for the next three years. There are probably scores of politicians in New York who now regret not pursuing the post of Lt. Governor. And there are probably a lot of New Yorkers that will be surprised to learn that their new Governor is not only Black, but legally blind.

The position of Lieutenant Governor in New York has always been a somewhat weak one, and one that is not eagerly sought after. And no one ever envisioned the youthful and energetic Spitzer would ever need to be replaced. And when the job is playing second fiddle to one with an ego as large as Spitzer's, not everyone might want the job.

When Spitzer wanted to reach out to minorities he tapped David Paterson, who was formerly the minority leader in the state Senate. Paterson had also been widely speculated to be the probable replacement for Hillary Clinton in the U.S. Senate if she became President. Likely few outside of New York noticed, or cared, when he agreed to run as Lieutenant Governor.

From all accounts, it sounds like Paterson is the perfect person for the Governor's job. He is seen as a consensus builder, and is respected by people from both parties. From what I've read, he did a good job in the New York state Senate. During an interview this week he was asked if he ever visited a prostitute. Showing a wry sense of humor, he responded "Only the lobbyists."

Paterson also noted in the interview that 71% of blind people in this country are unemployed, as are 90% of deaf people. I hope he continues to highlight such statistics, while pushing New York to be a leader in working to change them.

Sometimes things just happen. And this time, I'm awfully glad that Paterson is the soon to be Governor of New York. He sounds like just the kind of person that can demonstrate with quiet competence that discrimination against the disabled is not only wrong, but bad for business and society as a whole.

Wednesday, March 12, 2008

What Makes Someone Be So Cruel?

photo credit-exfordy
creative commons license

Like a lot of other people, I've been following the Poling case closely. But another case in the news caught my attention this week.

This week, in the sleepy Mississippi river town of Alton, IL, 6 people have been charged in the death of a developmentally disabled woman who was 6 months pregnant. The 6 people charged range in age from 43 down to 12 years old. According to the story

Police said the autopsy revealed Dixon died on January 31 after being repeatedly shot with a BB gun, being scalded with a hot liquid and being beaten on her head and body. They said Dixon's fetus also died.

And lest we think that this horrid incident was a crime of passion,

Police said the attacks lasted for four to eight weeks.

I agree with others that it's not these things we need to worry about so much, as everyone realizes how unacceptable this behavior is, and that most people, when it is explained what the Judge Rotenberg Center does, also feel that it is unacceptable. I also feel that what we really have to worry about are the things that fly under our radar, like all the things that happen in institutions daily that we never hear about, and how most of us never think twice about the "helping" paradigm in disability.

But still, when I read a story like this one, I still don't understand how people can do such things to each other.

All involved in this have been charged with first degree murder, as well as a variety of other charges.

Monday, March 10, 2008

Features of Autism Spectrum Disorder

Of our two kids, one is on the autism spectrum. So I'm not surprised when I come home and see toys lined up as in the above picture, as people often write that such things are common. In retrospect, I also shouldn't be surprised that the same child that lined those toys up also had a lot of GI issues as a baby, likes to hide under tables at times, and is somewhat hyperactive. We have also had a lot of problems with toe walking, to the point of having to put leg casts on for several months. Even though not all of these things are listed in the DSM-IV, many children on the spectrum have these same issues, so it shouldn't be surprising that my child displays these features.

Except for the fact that the child I'm referencing above is my younger one, Sweet Pea, who is most definitely not autistic.

Sweet Pea is one of the most social kids in her class, and would never qualify for an autism diagnosis.

Recently, in the Poling case, the Division of Vaccine Injury Compensation decided

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

Many people say that this document says that the government admits that vaccines cause autism. Rather than focusing on what Hannah Poling primarily has (mitochondrial disease), many have focused on the phrase "features of autism spectrum disorder".

Having never met Hannah Poling, I'm not sure if she is on the autism spectrum. It is entirely possible that she is. If one out of 150 individuals are, then it makes sense that at least one out of every 150 individuals with mitochondrial disease is also autistic, independent of their mito disease (I know, there may be more, but I'm talking independent of their mito disease, not linked to it). But the court document doesn't say Hannah is autistic, just that she displays "features of autism spectrum disorder". And someone looking at certain aspects of Sweet Pea's behavior and condition might decide that she had "features of autism spectrum disorder" too, which I know is totally false.

Saturday, March 8, 2008

In Case There Was Any Doubt

There are a lot of interviews out there with the Polings, following the announcement that the Vaccine Injury Compensation program had ruled in their favor. One of them I saw was over at ABC News.

Two things struck me when I viewed the video that's up in the upper right corner on that page. The first is "What's their lawyer doing with them?" I mean, the decision is already in, and this is a civil case, not a criminal case. Were they afraid that they would say something incriminating? Or were they afraid that they would say something that would jeopardize the amount of the pending settlement?

So then I looked up the lawyer. The lawyer is Cliff Shoemaker, who is no stranger to vaccine litigation. As it says on his website,

"Today, Cliff is one of the lawyers focusing his attention on the national disaster that occurred in the 90's when we poisoned a substantial number of our children with mercury, creating an autism epidemic."

Cliff was also evidently the lead attorney for CoMed (Lisa Sykes) in suing the FDA to get mercury out of vaccines.

The other thing that struck me about that ABC interview was that the father, Dr. Jon Poling, referred to the head of the CDC, Dr. Julie Gerberding, as "Ms. Gerberding" when there's about 3:30 left in the video. Now it may have just been a slip of the tongue on his part, but I find it hard to believe that a doctor would not know that the head of the CDC was a physician (who also holds a Master's in Public Health). And I also find it hard to believe that a doctor would not use a fellow physician's title when referring to her. Unless of course he was trying to purposely make her seem less knowledgeable and important. I mean, after seeing over at Kristina Chew's site that Jenny McCarthy is calling for the immediate resignation of Julie Gerberding as the head of the CDC, I started to wonder. If I was a conspiracy theorist, I might think that the Polings were coordinating with the Age of Autism folks to try and get Gerberding removed.

Meanwhile, Lenora pointed out in a comment to my last post that Dr. Poling gave an interview over at WebMD that didn't seem to jive with the press conferences.

Indeed, in that interview Poling says both

"I don't think the case should scare people," says Poling, 37, who emphasizes that vaccines, like all of medicine, carry risks and benefits.

as well as

"Vaccines are one of the most important, if not the most important advance, in medicine in at least the past 100 years. But I don't think that vaccines should enjoy a sacred cow status, where if you attack them you are out of mainline medicine."

"Every treatment has a risk and a benefit. To say there are no risks to any treatment is not true.''

"Sometimes people are injured by a vaccine, but they are safe for the majority of people. I could say that with a clean conscience. But I couldn't say that vaccines are absolutely safe, that they are not linked to brain injury and they are not linked to autism."

This interview seems to be a "face saving" attempt by Dr. Poling with the mainstream medical community. A way for him to say that he knows that there is no science behind the court decision, but that he didn't need science, just a little doubt. The WebMD quotes are clearly different from his media interviews, where he emphasizes that he feels strongly that there are thousands of other cases just like his. Statements that will certainly scare people away from vaccination.

I find it hard to comprehend why a physician could (rightly) admit that there are risks to every procedure or treatment, and then feel entitled to payment when something happens. Has he bought into the theory that every bad outcome needs to be compensated? I hope he isn't too disappointed when patients start sueing him for every bad outcome that happens to them, whether it was his fault or not.

My parents used to criticize me hanging out with certain kids because they weren't good kids. They rightly told me that I would be judged by the company I keep.

Well, Dr. Poling, I think you're going to be judged by the company you keep, as well as all the comments you make. A little backsliding on a medical site won't make up for the fear mongering and atrocious statements not backed up by science that you make to the media, or the fact that you are hanging out with people who hold views that are not supported by any science at all.

Friday, March 7, 2008

It's Not Our Fault!!

photo credit-eatmeatnow
creative commons license

Thanks to S.L. for putting up a link to the Poling news conference on the CNN website.

Kristina Chew has detailed this case (the case that some claim links vaccines to autism, but most see no such "concession" by the government) here and here.

As I watched the news conference, I became increasingly frustrated, and then angry. You have this high power couple (he a neurologist, she a nurse turned lawyer) who obviously aren't hurting for money. Even if they haven't made it big yet, they certainly would have been able to provide for their daughter (as well as their two other kids) without the government settlement. So why did they feel compelled to go forward with this case? One thought kept coming back to me. I could almost here mom say,

"We've been cheated!"

"We had a nice, NORMAL, daughter. We were supposed to have a summer house on the Outer Banks, ski in Colorado every year, and in general be a power couple". Now mom didn't really say those things, but that's what I understood her meaning to be.

The mother did say "Hannah needs constant one on one supervision" and "My husband's heart broke when he realized his daughter might have autism". Meanwhile, the camera pans over to show a cute, well behaved 9 year old interacting with two people over on the side. And I can't help but feel sorry for this girl, who will grow up with the story that she was "damaged" by vaccines, but the parents got the evil government to pay. How she was "normal" before this (despite her genetic mitochondrial disorder-which the parents never mention), but now she is damaged goods. Supposedly mom (Terry Poling) also has a mitochondrial disorder, but has no outward signs.

Maybe mom feels guilty about "causing" her daughter's "autism", and wants to make sure that no one in their circle of friends will blame her. Perhaps she's thinking, "The government admitted it! They're the ones that did this to us! We're just like you, really we are."

I find this rather sad.

The money from the government will assist the Polings in keeping up the lifestyle they feel entitled to. They can point to the government case to "prove" that they are truly a "normal" power couple who were done wrong by their own government. And poor Hannah will always be identified within the family as "damaged goods", because that's the only way that mom and dad can keep up the pretense that everything is fine.

Meanwhile, they obviously have no concern regarding the effects on public health in this country. When the next pertussis or measles outbreak occurs because of them parroting the nonsense that vaccines cause autism (which will certainly further decrease vaccination rates in this country), will they feel the least bit guilty? Or will mom look to "help" those moms who lost their kids to vaccine preventable diseases by becoming the lawyer that encourages those parents to sue the government, too?

Here's my unsolicited advice to the Polings:

OK, you pulled it off. You managed to tap into the financial largess of the US government (which means the rest of us are paying for this). Once you get your check, do us all a favor (especially yourselves) and just stop talking about this. Because I know that you'll never publicly admit that you were wrong, that Hannah had a genetic disease that something was bound to aggravate, and it just happened to be a fever that may have been caused by vaccination, but nobody really knows.

And I know that if you get stuck in the "pity party" and blaming others that you'll never come to truly accept and love Hannah as she is. You may think that trying to constantly trying to "fix" your daughter is the best thing you can do for her, but she will tell you later how devastated she was that you never accepted her for being her. Let go of the anger you feel, or it will disintegrate your family. The rest of us will take the extra 5 years to undo the damage you've done, and educate the American public that vaccines really don't cause autism. Just take the money and go away.

Addendum: Three other posts that give great background on this are Steve's, Emily's, and S.L.'s.