Sunday, September 27, 2009

Dear Mr. Springsteen

photo credit-uchiuska
creative commons license

Below is the letter that I just e-mailed to Bruce Springsteen's publicist at . I encourage others to also write him and express your opinions.


Dear Mr. Springsteen,

I am writing you regarding your upcoming concert that you are doing in conjunction with Autism Speaks.

I have been a great fan of yours for years, and must admit that I got a little teary eyed when I read a story of how your music helped an autistic child learn to talk. My own son (who is autistic) also went through a stage where he sang a lot of songs (and bits from songs) instead of talking in the usual fashion. I would have much preferred that he used “Born to Run” instead of songs he heard on “Barney”.

I am sure that by now you are aware of the controversy regarding the organization Autism Speaks within the autism community. Not only do many parents of autistic children object to the way that Autism Speaks portrays those with autism, but more importantly those who are actually on the autism spectrum object to how they are portrayed.

Although I don’t know you, I sense from your music that you understand the underdog and the downtrodden in life. Unfortunately, many autistics in society are bullied and abused, sometimes by the very people that are supposed to be helping them.

The objections to the way Autism Speaks treats autistic individuals most recently revolve around a video that they released, but go deeper than that. Autism Speaks, in attempting to “raise awareness”, as well as funds for research on autism, has been consistent in using language that is not only disrespectful towards autistic individuals, but also absolutely false in many instances. Those with autism have not been kidnapped or stolen, and are not monsters. Autism is not a fatal disease, and thus should not be compared to cancer or AIDS. Finally, Autism Speaks is perhaps the only major organization that purports to represent disabled individuals that refuses to include those with the disability on their board.

This is not to say that those with autism don’t have challenges, or that parenting those on the autism spectrum is a piece of cake. But much of the challenge comes from living in a society that discriminates against those with disabilities, and lacks a true understanding of what those individuals actually require in regards to accommodations.

I ask that you reconsider your association with Autism Speaks, as that organization neither represents either autistic individuals themselves nor contributes to their welfare. Instead, this organization denigrates those on the spectrum. I just don’t see you as the type of person that would want to be associated with such an organization.


Joe xxxxxxxxxxx


Edit-If there is one post that Mr. Springsteen should read, it is the one put up by Bev over at Asperger Square 8. Go read it here. Bev's post is the most elegant and powerful one I've seen on this thus far.

Wednesday, September 23, 2009

When Will They Listen?

One would have had to have been living in a cave in the greater disability community two years ago not to have noticed the Ransom Notes Campaign and the furor that followed it. In that campaign the NYU Child Study Center put out an ad campaign that implied that autistic individuals (as well as those with a number of other conditions) had been kidnapped. This imagery was (not surprisingly) extremely offensive to many in the greater disability community. After an intense counter campaign by disability advocacy groups, including ASAN, the Ransom Notes Campaign was stopped.

The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc.

And as pointed out over at "Cat in a Dog's World", perhaps the worst part about it was that they used video sent in by autistic families while they had their doom and gloom voiceover.

Two years ago the NYU CSC claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media.

I wonder what excuse Autism Speaks can possibly come up with this time.

Tuesday, September 22, 2009

But At Least It Would Be a Graceful Death

photo credit-mcveja
creative commons license

Sweet Pea tends to worry about the future. She'll come up with all sorts of things to worry about. Usually these are easily countered, and she is (temporarily) reassured. It's gotten that many of the same things come up over and over again, so I've developed almost automatic responses:

"What if I don't like the job I get when I grow up?"
"Then you'll get another. I had a lot of different jobs before the one I have now".

"What if a bad person breaks in our house and kidnaps me?"
"The doors and windows are all locked. And the police drive around all the time looking for bad people".

"What if you die?"
"I'm not planning on dieing for a long time".

"What if there's a tornado and it knocks the house down?"
"This house has been here for over 100 years, and nothing has knocked it down yet. Mommy and I and this house will protect you".

But the other night she threw me off for a second. She came up with:

"But what if I get sick?"
"What do you mean, Sweet Pea?"

"What if I get sick and die from the Swan Flu?"

One part of me cringed a little inside. I shared this irrational fear, that this flu season would be one for the record books. That there would not be enough vaccine in time. One of her classmates already had a case. A grandchild of a co-worker is currently ill with it. One of our doctors got it last fall from a patient. What if I caught if from a patient and infected one or both of our kids? Of course I know that even if they get it, that they probably won't die. They'll probably be enough anti-viral medicines around to treat them. Probably.

Of course another part of me wanted to laugh out loud at the "swan" thing. Buddy Boy immediately chimed in,

"It's the SWINE flu. SWINE flu! You know, pigs!"

I then hugged her, and told her we'd just have to get her some medicine for that, if she got sick.

We actively try not to have the news on the TV, as there's seldom anything good on, and you'd think that every other child in the county had been kidnapped for all the coverage kidnappings get. But somehow the world creeps in, no matter what we do. And the media magnify our little fears, irrational though they be.

Friday, September 18, 2009

Dogged Perseverence

Some people may remember the story of the 5 year old Columbia, Il boy who had a service dog prescribed for him by his doctor, and had to fight a court battle in order to have the right to take the dog to his school. The Kalbfleisch family won a court order to have the dog allowed to accompany their son to school, after spending about $50,000 on attorney's fees fighting the school district, and another $10,000 for training the dog, which was trained by Wilderwood Service Dogs of Tennessee.

The school district, which originally was willing to let Carter Kalbfleisch attend his home school, suddenly decided that the dog was not welcome. So the school quickly called an IEP meeting, passed an IEP without the dog being necessary mentioned in it, and insisted that placement be in a special autism specific school, rather than Carter's home school. The Carter's are going along with this placement for now, in order to get their son into school. But they are continuing to fight to get him placed back in their home school.

"I think it’s important for him to be in his own community with his local peers for him to look up to," said Kalbfleisch. "It’s very important for autistic kids for their communication skills and, later on in life, to get them interacting with people and into the real world."

It never ceases to amaze me the lengths (and expense!) that a school district will go to in order to fight a parent. When someone in the school district decides that they don't want someone in their school, they seem to have no qualms about spending obscene amounts of the taxpayer's money to fight individuals. In this case, the Kalbfleisch's have spent $50,000 so far. Further appeals will certainly take at least $10-$20K more. If the family has spent that much, the school district has spent at least the same (and probably more, as they often put multiple lawyers against the single one that the family provides). The special school that they are sending Carter to costs about $24K more than his usual school/year. So figuring conservatively, the school district has been willing to spend $85,000-$95,000 this year alone just to keep one service dog out of a classroom, with an additional $24,000 every year to keep him out.

It looks like a friend is going to be facing a similar fight against a school district, which has decided that it'll keep making the environment worse in order to force a child out of the family's preferred placement (their home school), in order to place him where he can be warehoused. Please drop by Kristina's temporary digs and lend a little moral support.

I've never met anyone quite so doggedly persistent as Kristina, and I know that she'll give this district a run for their money.

Wednesday, September 16, 2009

All You Need Is...

The above message was slipped under the bathroom door this morning by my daughter, Sweet Pea, while I was shaving. She usually isn't up that early, so it was a bit of a surprise. When I had finished I opened the door, and she gave me a great big hug and told me I was the best daddy in the whole wide world.

Not a bad way to start your day.

I once read a definition of a daughter as "The one woman in your life who will love you totally and not try to change you." I can kind of understand that.

Of course, this is the same daughter who over the weekend, after being called out for taunting her brother, was crying and yelling at us at the top of her lungs "I hate you. You don't love me. You always yell at me. I'm going to leave and find new parents who will love me." (Note-she defines "yelling at her" as any comment that uses even a slightly disapproving tone of voice)

I think I'm going to have to "store" the memory of days like this, to get me through her puberty.

Wednesday, September 9, 2009

Liverpool-More than the Beatles

photo credit-jcesar
creative commons license

As most fans of the "Fab Four" know, today a digitally remastered collection of Beatles songs was released.

As most are surely aware, the group got their start playing in pubs in Liverpool. But what I really want to talk about today is something else that Liverpool may become famous for-The Liverpool Care Pathway. I bring this up to illustrate what I believe is one of the major ways that government directed/socialized medicine is potentially life threatening to those with disabilities.

Basically, the Liverpool Care Pathway (LCP) is a standardized method of dealing with people that are expected to die soon in the UK. It is a standardized treatment method that has been vetted by a panel of "experts" to improve how one dies in the UK. On its surface, there is much to recommend it. Rather than be hooked up to machines one doesn't want and subjected to procedures that have little probability of success, it is much preferable to die in relative peace. I have often advocated for patients to have the right to say what they want, and have had many "difficult conversations" with patients regarding what kinds of interventions they wanted if they became unable to communicate. But it appears that the LCP goes way beyond advocating for and implementing patients' wishes. Combined with the Mental Capacity Act of 2005, which gives doctors the ultimate decision making authority when they judge patients unable to make their own decisions, the LCP allows patients to have fluids withheld and deep sedation given IV until they die. Once doctors decide that you fulfill entry into the LCP, one's death becomes a self-fulfilling prophecy, as the deep sedation masks any indication that you are improving.

The LCP was initially used for people with terminal cancer, but its use has expanded to patients with other conditions, such as after a stroke. As this presentation shows, all you need to be entered into the pathway is to be hospitalized for 48 hours, and two of the following conditions present:

"- bed bound
- semi-comatose
- only able to take sips of fluids
- no longer able to take tablets"

It doesn't take a rocket scientist to see that many people with disabilities might enter the hospital with at least one strike against them. And combined with the general attitudes towards the elderly and disabled in healthcare settings, it isn't hard to see how some people feel that they need to rescue their loved ones from the LCP. As noted in some of the articles I linked, it doesn't matter if your friends and family disagree. Family members have been threatened with arrest for feeding their family member once they were put on the LCP fast track to death pathway.

But why bring this up now? Why don't I, living across the pond, just MYOB (mind my own business)? Because of course tonight is the night that President Obama makes his pitch to push the current health care bill that is before Congress. While I freely admit that there are many things that need to be fixed (including access and cost issues), I heartily disagree with the Utilitarian approach that government provided healthcare provides. If there is going to be rationing (and basically all forms of healthcare provision involve some rationing at some point), I want to have the decision making capacity of what is provided, not have it be the decision of some anonymous government committee.

As others have noted, the healthcare bill under consideration creates 52 new government organizations, including an independent advisory council on what are best medical practices. Dr. Ezekiel Emanuel (Presidential adviser and brother to Whitehouse Chief of Staff Rahm Emanuel) has written:

"Substantively, it suggests services that promote the continuation of the polity—those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations—are to be socially guaranteed as basic. Covering services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic, and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia."

Emanuel sees a world where "the community" comes first, and individuals are only judged worthy of expenditure if they have value to the community (with not even a nod to the intrinsic value of all human life).

So as you listen to the speech tonight, know what the President's adviser on healthcare is telling him, and what this bill before Congress will result in. Don't think that you'll get healthcare reform passed now, and worry about the details later. If you happen to get sick, there just might not be any later for you.