Category: Media

Boardwalk Empire, Corruption, And Incentives For Public Servants

Posted by – October 18, 2010

Like described by Abby Jean on the Feminists with Disabilities blog recently, I’m obsessed with public policy.

It’s true. I am a policy wonk. I am endlessly interested in it. I read about it, think about it, talk about it and … write about it. (As in, what I’m doing right now.) And I do all of this because I think it’s immensely important. Crucially important. Vitally important.

Public policy is how the government – whether local, state, provincial, federal, or any other level – takes action on a particular issue. It covers a whole huge range of potential state actions – allocating and spending money, setting and enforcing professional guidelines and standards, creating agencies and staff, structuring tax incentives, even defining what constitutes criminal behavior. That’s an extremely big category that clearly has an enormous and unparalleled effect on the world.

Excerpted from I Love Policy | FWD (Feminists With Disabilities) by Abby Jean (not me)

I am captivated by political decision making, how it works and the impact it has on our lives. True, I am super nerdly; I can’t read something or watch a movie without ideas about the history of policy and the effects it has had firing around in my brain. That means the new HBO series Boardwalk Empire is like catnip for me. It brings the history of the ’20s and its politics to life in lush, vivid photography and provides fascinating context and insights into Prohibition, the mafia, suffragettes, corrupt politicians and politics of the era, fashion, the flapper girls, and the feminism of the era. The intense dissimilarities and the intense similarities the ’20s have with life today also really draw you in. Recently *yet another* economic study confirmed that the 2000s have the most unequal division of wealth in U.S. history, excepting the 20s. Unprecedented corruption is similar, struggles over prohibition similar too. What isn’t similar is the feeling of free-wheeling American personal freedom, including the “feminine liberation” of the time that went the way of the stock market after the Great Depression, and the economic boom that brought incredible opportunities–people are super nostalgic for those dissimilarities.  I heart the show; it’s triggered a major ’20s obsession for me.

I especially liked last week’s episode, it took us inside the back room and explicitly explored policy and the politics of divvying up new state-level funding for highways; we got an anatomy of the back room deal.   Notorious Jersey City machine boss Frank Hague was pitted against the show’s principal protagonist (and anti-hero) “Nucky” Thompson, the machine boss of Atlantic City, and Republican Senator Walter Edge trying to arbitrate between them.  Hague wants all the road appropriations to go to Jersey City, and Nucky wants everything to go to Atlantic City, where he says he has new hotels (at this point in the timeline, the Ritz-Carlton Atlantic City had recently opened) but tourists can’t get to them because the current roads to South Jersey are so muddy and inadequate.  Both men are corrupt bosses used to getting everything they want (and expect to skim off a nice slice of any new funding for themselves) and compromise is difficult to impossible.  Nucky pretty much created Edge’s political career, serving as his campaign manager and using his money and connections to win him the gubernatorial race (then he moved from the governor’s mansion to the U.S. Senate) so Nucky expects him to go to bat for Atlantic City, but Hague tipped the Democratic vote for Edge, crucial to win anything; Edge has presidential ambitions and can’t afford to alienate either of them, so he plays the diplomat.   The fact that Nucky, Hague and Senator Edge were all REAL POLITICIANS and that the dynamics at play are real (Nucky really was Edge’s campaign manager, etc.) makes it all the more riveting.

Here’s a clip from that scene.

Fair Use law lets me use this copyrighted material because its 1) a really brief clip and 2) used for the purpose of critique (i.e. it’s legal for the same reason Roger Ebert or Jon Stewart showing a clip in order to comment on it is legal).  See Code of Best Practices in Fair Use for Online Video.

80 Second Clip from HBO’s “Boardwalk Empire”: Back room Dealing

Coarse language warning: Nucky drops many F-bombs on Frank Hague in this clip, he thinks Hague just wants “a payoff” and is really frustrated and angry.

So,  after watching this scene, my policy mind started buzzing.  The corrupt incentives of the 1920s were perhaps different than the corrupt incentives of today. Both Nucky and Hague are motivated by corruption, but that corruption is motivating them to fight really hard for highways going to their respective counties (unquestionably a benefit for the economy and the average voter).  In cases like this, is corruption helping the public?

These are the questions I wrote this post to ask: Did the certainty that they would get a hefty slice of any new project make them fight harder than politicians today to get projects for the public good?

Should we incorporate such incentives into the current system, like bonus pay or free stuff or public accolades if a politician helps the general population?   Because right now, we have a system of open, legal bribery; ALL the incentives and thus, inevitably, ALL the policymaking energy is lined up against efforts to help normal constituents, and lined up for the special interests that give money to elect candidates. I always refer to this as giving “campaign bribetributions.” It’s essentially bribery, it totally skews the system so that the corrupt incentives make the government serve powerful private interests first and the public good only accidentally, but it remains completely legal.

At least in this scene, the corrupt incentives make public officials do something for the public good. I am desperate to address the crisis of campaign bribetributions making government only serve moneyed interests (not democracy but bribeocracy). If the powerful will never let us remove campaign bribetributions from our system, how do we realign the corruption to serve the people NOT just narrow interests with fat stacks of $$$$???

Nick

It's all about the Benjamins.

What New Fall TV Shows To Avoid (2010)

Posted by – October 6, 2010

It’s true. Lots of what’s on TV is just unbearable.

Here are some shows to avoid at all costs:

Chase – NBC, 10/9central Monday night

This show is about a Houston task force of U.S. Marshals who chase the most dangerous, most wanted fugitives in Texas. But unlike most crime dramas, where you’re rooting for the cops, with Chase, you’re rooting against the cops just as much as the criminals; the U.S. Marshals are every bit as unsympathetic and unsavory as the fugitives. In the pilot, they’re breaking doors off their hinges and intimidating the mom and fiancée of a suspect like freakin’ thugs.

"Annie Frost," played by Kelli Giddish

Maybe that’s an important commentary on what law enforcement has become in the 21st century, but it isn’t fun TV. The lead character, Annie Frost (played by Kelli Giddish from All My Children) lives up to the “frost” name, because she’s a frosty, cold shell of a woman with all the human warmth of an Arctic winter. I turned this show off after less than 15 minutes; it was that unappealing. Avoid this.

Hawaii Five-O – CBS, 10/9central Monday night

This is a remake of CBS’ original Hawaii Five-O series (1968-1980), trying to make it slick and hip for the new era. Problem is, it’s not that appealing because it’s layered in cheese. The episode last week was a good example; it centered on a kidnapping of a business leader who was about to expose security threats to Hawaii and nearby naval forces. Grace Park (formerly an awesome performer on Battlestar Galactica) is an actress of Korean extraction, unconvincingly portraying native Hawaiian rookie cop “Kono” on the Hawaii 5-0 team (no CBS, Korean people do not look like native Hawaiians! How dumb do you think we are?!)

Poor Grace Park

She (Kono) is guarding the kidnapped CEO’s young son, when suddenly she finds a note in a foreign language on the kitchen counter. The CEO’s white, normal-looking girlfriend is behind the kidnapping! It’s what we least expected! The white, model-looking girl sees Kono (Grace Park) uncovering the secret plot, and reveals she’s actually evil and has an incredibly fake Russian accent and she ambush attacks Kono in the kitchen! They start an epic martial arts battle! The girlfriend slams Grace Park’s face into the kitchen counter, and then they karate each other ferociously and crash fakely through fake bamboo and end up poolside. Then the girlfriend, who’s evidently secretly been an enemy commando, knocks Grace Park into the pool and Grace Park spins horizontally, dramatically like a figure skater in a tight twirl or a phony Matrix parody. Soon we end up inside the white terrorist/mobster lair (Dano mentions they’re Serbian cyber-terrorists? LOL) and Grace Park is tied to a chair along with the CEO dude and now his preteen son, too. The dude’s white model girlfriend is carrying some giant carbine or something, half her size, and pointing this weapon at the hostages and pacing menacingly and angrily spitting threats in her fake Slavic accent “you’re going to die! only matter of time.” The ridiculousity line has been crossed. I start openly laughing at the show. Laughable isn’t what CBS was going for at all, but they got it in spades. Grace Park is a great actress, capable of some awesome dramatic performances, and I’m sure she’ll look back on this Hawaii Five-0 part of her career with intense regret.  :-/

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THE EVƎNT – NBC, 9/8central Monday night

The TV review blogs HATE this show; they reject it as a blatant, heavy-handed rip off of 24 and Lost and are just savaging it.

The discerning nerd audience at Comic-Con

The backlash is probably because it was hyped heavily to the discerning nerd audience at Comic-Con in July, and then the pilot seemed like one long trailer for a pilot and the epic “event” the plot revolves around doesn’t actually occur in the pilot, so it failed to meet those high Comic-Con expectations (note to NBC: don’t write cheques your ass can’t cash). The reason people cared about the elaborate mysteries in Lost was they cared about the characters and their backstories and what will happen to them; THE EVƎNT pays little attention to characters but expects us to care about the half-dozen complicated, interconnected unanswered mysteries they’ve presented? FAIL! Listen up NBC, people don’t watch undeveloped characters they don’t care about, especially when you gotta break your brain on mysteries; that is the reason THE EVƎNT got crushed in its time slot, coming in third behind ABC and CBS. Third-place won’t pay THE EVƎNT’s big stunt and special effects budget and fat salaries for Blair Underwood and Laura Innes, so I expect NBC to pull the plug fairly soon.

"THIS ENDS NOW"

$#!T My Dad Says – CBS, 8:30/7:30central Thursday night

I was rooting for a show from the internets to do well, a lot of us were. But this show is just terrible. The canned laughter, the laugh track, sounds so incredibly fake, and it’s really unbearable to hear it over and over and over and over. The jokes are very forced, and fall flat. Nothing funny here. Avoid.

Outlaw – NBC, 10/9central Friday night

Not only is this show awful, the worst premiering show of 2010, it’s the worst premiering show I’ve witnessed in YEARS. Sweet Lord, this show is atrociously, hilariously awful. Plan 9 from Outer Space bad. It’s the first drama ever produced by Conaco Productions, Conan O’Brien’s production company, and it often verges on comedy, albeit unintentional. Most everything in the pilot is preposterous and impossible; it just can’t happen in real life. Jimmy Smits plays Cyrus Garza, “the most conservative justice on the Supreme Court,” and son of fictional Latino civil rights activist Francisco Garza who worked alongside César Chávez. After Francisco and Cyrus’ car crashes, and only Cyrus survives the accident (implausible plot device #1) Cyrus randomly sleeps with a random (beautiful model) ACLU protester and suddenly does a 180 on his bedrock political beliefs and lifelong legal philosophy and he resigns from the Supreme Court to become a liberal activist lawyer, defending the downtrodden and dispossessed–pro-bono–against “the system” that he spent his career bolstering (outrageously absurd plot device #2). He gives a nonsensical speech about how he’s resigning because the role of the Supreme Court is upholding the law and defending “the system,” and he wants to challenge the law for people “the system” doesn’t work for and blah blah blah blah blah, while sitting in open session on the bench with the other justices (really implausible). Then he becomes the defense attorney for Greg Beals, the death row inmate his own Supreme Court opinion gave another chance to (very implausible). Then he is somehow able to use the majority opinion he himself wrote, Beals v. Pennsylvania, as precedent to introduce new evidence to exonerate his client…Beals. The legal impossibilities just stack higher and higher until it becomes a kid’s cartoon of the judicial process.

Left, Cyrus Garza (Jimmy Smits), center, Al Druzinsky (David Ramsey) and Mereta Stockman (Ellen Woglom) at right

The women characters are just as “profiles in preposterous,” even bordering on offensive with the female cliches. Cyrus is a chauvinist pig who womanizes blatantly. First, a random liberal protester who angrily protests and denounces him for being neutral (“I’m Switzerland!”) about the Beals case, and, of course he ends up in bed with her.
Second, his legal aide from the Supreme Court, Mereta (pictured above) overhears Cyrus’ bookie telling him he has to have all his hundreds of thousands of dollars in gambling debt paid in full within three months, and because in this show women are dim-witted, she thinks that this means Cyrus has three months to live. Later, she interrupts Cyrus talking to the death row guy’s girlfriend and the rest of the 4-person legal team by the courthouse stairway and, in front of everybody, desperately throws herself at him! She’s all “Now that I know the truth you’ve only got three months left, we can focus on what really matters. I LOVE YOU, CYRUS!” It’s a failed caricature of a woman, a failed attempt to twang romantic heartstrings, and reinforces negative stereotypes of women and negative stereotypes of people with terminal illness.
Third, Cyrus’ private investigator “Lucinda Pearl,” a caricature of a sexy, bisexual leather cyberpunk chick in knee-high boots who’s always doing something extremely brazen sexually like taking her top off to distract guards so she can swipe info, and teasing Cyrus’ chief clerk with single entandres and popping her gum.
Come on man, can you get more blatantly ratings-whoring than this, with such exaggerated, fake, cartoonish, borderline degrading characters? It’s like the pilot’s creators don’t have a wife or daughter or any woman they respect in their lives. What’s it say about American culture today that this one-dimensional, shock-jock type caricaturing is how we view women?

The most realistic character in the show was Mereta’s (apparent) Corgi mix. Whatta good dog!

Just as fake as the characters were the sets. The pilot opens with ridiculous paper mache bricks on the “prison.” Later, Lucinda goes to a crime scene with a skeleton that looks so fake it had to come from Rite Aid halloween clearance. Jeez, NBC! Fund your pilots, otherwise Conan’s company is gonna keep the C team on sets.

Don’t take this show seriously; you’ll end up offended. If you’re going to watch this drek, put on your LOLLERSKATES and get in your ROFLCOPTER because this clunker is layered in (unintentional) hilarity; you will ROFL, indeed.

Other good reviews of Outlaw:

USA Today: NBC’s outlandish ‘Outlaw’ richly deserves death penalty (“That’s not a prime-time show, it’s a Saturday Night Live sketch.” “Preposterous to a painful degree”)

Washington Post: Jimmy Smits’s new NBC courtroom drama, ‘Outlaw,’ should be dismissed (“ludicrously dumb” “my eyes rolled so hard that my contact lenses popped out” “Smits is a fully glazed, overcooked ham”)

Collider TV Review: NBC’s OUTLAW (“painstakingly exaggerated” “veritable treasure trove of cliches” “searing pain that runs through my leg (and the rest of my body) when I think of all the resources wasted on a show like this”)

Discerning readers will note that the network responsible for the most shows on my “avoid at all costs” list is NBC. This network seems hopelessly mired in creative, programing and financial FAIL. Time for some serious soul-searching at 30 Rock, dudes, and at Comcast HQ too….

For my list of newly premiering shows actually worth watching, read my previous post, What New Fall TV Shows To Watch (2010) Spoiler: nearly none of them are from NBC.

If you have other shows or other things you want me to review, put it in the comments!

Nick

What New Fall TV Shows To Watch (2010)

Posted by – October 2, 2010

Newsflash: Some New Fall TV Series Actually Worth Your Time!!

Detroit 187 – ABC, 10/9central Tuesday night

This new cop show about a unit of homicide detectives in Detroit is really intelligent and immersive. Unlike most hour-long dramas, it really immerses you in an environment, in characters, with the city (Detroit) as a character in every episode. I felt like I was really there by the river in inner-city Detroit. Yeah, the scripts lean on archetypes (the pretty girl detective, the newbie

Detective Louis Fitch from ABC's "Detroit 187"

the old black veteran on the verge of retirement, and of course the lead, the eccentric, Asperger’s-like detective Louis Fitch with an uncanny, near-mentalist knack for clues and hunches, played by Michael Imperioli) but archetypes can be helpful shortcuts to get the audience involved QUICKLY. The production team just has to make sure the writing stays fresh and engaging and insightful and that their archetypal characters don’t get stale and predictable. Lazy writing could kill the show. The writing being too intelligent could also kill the show. Now, it’s worth your time.


The Whole Truth – ABC, 10/9central Wednesday night

This is a smart legal drama with an awesome cast (the lead stars are Rob Morrow and Maura Tierney) and great, engaging, rapid-fire dialogue back and forth. The premise is that it tries to give you “the whole story” by telling the same ambiguous story and events from multiple viewpoints (the prosecutor–Tierney, and the defense–Morrow) and then ends with the big reveal of what really happened.
I liked the pilot; I was pulled in by the New York scenery and the plot involving a diabetic veteran in a wheelchair gone overboard on the Staten Island ferry (and some heavy-headed disability stereotyping they explored). If the writing stays good and keeps improving, the show has a chance to really build a big audience in the way that The Practice did for ABC, or the writing could go flat and the characters could go stale and the network will go for a midseason replacement; it’ll take pretty good ratings to pay the stars’ salaries, and good ratings aren’t guaranteed by any means. I sort of see this show as “on the bubble,” worth watching now but that could easily change.

Raising Hope – FOX, 9/8central Tuesday night

Like the last series Greg Garcia made, My Name Is Earl, this is a comedy that really breaks the half-hour sitcom mold. No annoying laugh track, and, instead of the cliche house set, it seems to be filmed on location in real life, single-camera style in a rickety wooden home with the broken front screen door and parents (Martha Plimpton–great to see her again!–and Garret Dillahunt) who scrape by with fringe service jobs (as a maid and a pool cleaner). The stay at home mom (like Marge Simpson) is no longer realistic in today’s economic world.

Anyhow, the show’s core premise is about Jimmy, the teenage son, raising the daughter (“Hope”) he got accidentally, and that could get boring if they don’t keep the writing really sharp or stop inserting new crazy characters. But, for now, it’s probably the best, freshest new comedy on TV. Worth your time.


Outsourced – NBC, 9:30/8:30central Thursday night

I like its really different premise; a guy moves to India to manage a catalog call center that just got outsourced to Mumbai. Fresh and engaging for now, and hopefully doesn’t become a stale, browner-skinned parody of The Office. Worth watching.

"Asha" on NBC's "Outsourced," played by Rebecca Hazlewood

Boardwalk Empire – HBO, 9/8central Sunday night

I really liked this show, a period piece set in Atlantic City at the dawn of Prohibition, and apparently based on the non-fiction book Boardwalk Empire: The Birth, High Times, and Corruption of Atlantic City. The elaborate sets re-creating the Atlantic City boardwalk and all the ’20s storefronts, the meticulously re-created clothing, they’re just amazing; this alone makes it worth watching. This is such a pivotal time in American history, with Prohibition, gangsters smuggling hooch from Canada, suffragettes/temperance activists, jazz, stock market boom, the roaring twenties economy, rampant individualism and materialism, rampant sex and feminine liberation and the flappers radically challenging social mores, but this era has very seldom been explored on film (with notable exceptions, like the film adaption of The Great Gatsby).

Nucky Thompson, the lead character in “Boardwalk Empire,” is directly based on real life corrupt county treasurer Nucky Johnson. He’s half politician, half gangster, and played by Steve Buscemi.

I’ve always thought this era deserved thorough exploration, for the good of American culture and understanding and etc., and man does this fit the bill; it immerses you in 1920 Atlantic City so well that you can almost smell the ocean on the boardwalk, the lush fabrics on the women and the $3 drinks. The head writer and producer is Terence Winter, one of the main Sopranos writers, and with its similar focus on gangsters, corruption, and seedy Jersey environments, the show is perfect for him, right up his alley. And it’s already equaling The Sopranos in terms of huge ratings cash cow, so, for HBO, it’s likely their “Next Sopranos.” But I think it’s also culturally significant. True, it explores a seedier side of the ’20s (it’s “anything goes” Atlantic City, any time period there is gonna be seedy) with lots of flappers flapping around as tourists, or waitresses in men suits, or showgirls in theaters as burlesque dancers, or mermaids with pasties, or geishas in a nude revue, or even flappers in straight up bordellos, but on the other hand it also subtly (but powerfully) explores Prohibition and gangsterism. When a scene takes us inside a temperance society meeting, we see the older suffragettes who advocate Prohibition, and hear the arguments about DEMON RUM (the leader recites a poem that ends “liquor, thy name’s delirium!”) But later in the pilot episode, we also see their arguments about alcoholism destroying families are well-founded; there are severe cases of deadbeat husbands who take the money needed to feed the children to buy booze, and severely batter wives who resist. Many suffragettes thus saw this social ill as a key women’s rights issue that any civilized country would respond to. But we also see how the mafia immediately perverts Prohibition to make huge profits; they start charging $3 for a glass of liquor, up from 15¢, and keep Atlantic City as drunk as ever. The pilot also (subtly) explores the issue of returning WWI veterans, Doughboys, who saw brutal combat in Europe, killing people repeatedly, and then feel murder is the only profession for them and join the violent alcohol smuggling business. I should blog more about the ’20s!

inside a temperance society meeting

My Generation – ABC, 8/7central Thursday night (prior to Grey’s Anatomy)

I loved this show; probably my favorite of the newly debuting Fall series. I’m captivated because it really is my generation, the class of 2000, and follows a group of nine friends that graduated in 2000, and traces what they said their goals are and what happened when the dreams collided with reality. They’re 28 now (same as me) and the series is slowly unraveling what happened to them since 2000, uncovering secrets and their effect on the present. It’s shot in documentary style; for the first 30mins, I thought it really was a documentary! I didn’t recognize any of the actors, so that didn’t break the illusion; only when I realized that we can hear the characters’ phone conversations and other things beyond the reach of a real documentary film crew, did I figure it out.

True, the show uses archetypes, and some people don’t like that, but it uses the archetypes really explicitly, with what archetype they are printed on the screen even! There’s Anders “The Rich Kid,” Brenda “The Brain,” Kenneth “The Nerd,” Steven “The Over-Achiever,” etc. And the core of the show is really playing off the labels that they had in high school and exploring how those work once reality hits. Steven “The Over-Achiever” is an example; it turned out that his overachieving was mostly due to abusive pressuring from his dad, who ended up jailed as one of the corporate criminals from Enron. Once his dad’s assets were frozen by the courts, Steven couldn’t pay tuition at Yale anymore, and dropped out. Instead of adapting, Steven pretty much dropped out of society, becoming a loser beach bum surfing in Hawaii, bartending to earn a living and having meaningless, anonymous sex with tourists; he really hit rock bottom.

Dawn Barbuso "The Punk," and Falcon "The Rock Star"

I’ve really gotten wrapped up in the 9 characters, I’m captivated, on the edge of my seat to find out what happens to them next. Maybe that’s because I long to connect with my real class of 2000 peers. What will happen/what’s happening to my HS Class of 2000/college class of 2004, the heart of the Millennial Generation? Did most of us find love and success? will we save the country like they always said? This show is all about exploring these issues; it’s the premise that really grabs me.
I really hope they don’t cancel it, but all the signs of axing are present….it’s not fast paced or action packed, it’s in-depth and intelligent and character development…could be doomed. UPDATE …and, I was right; ABC has already canceled My Generation.  ugh.

You’ll notice that ABC has the lion’s share of “worth watching” new pilots. This has little to do with ABC being awesome (it isn’t really) and a lot to do with all the other networks SUCKING. They really stunk up the place.

For more about this, see my next post: What New Fall TV Shows To Avoid (2010)

If you have other shows or other things you want me to review, put it in the comments!

Nick

Nick’s Crusade Blog Featured On Local Radio WBAI!

Posted by – September 23, 2010

My blog posts are making waves! My new blog essay about the affect of the Tea Party and the related drastic benefit changes on people with disabilities was the subject of a roundtable discussion this morning on local WBAI radio’s disability chat show “The Largest Minority.”

You can listen to the radio discussion here.


Sept. 23 “The Largest Minority” on WBAI radio, featuring a reading of my blog essay “Why It’s Time For Survival Politics For People with Disabilities” and a roundtable discussion with cohosts T.K. Small & Lawrence Carter-Long, and guest Josie Byzek, New Mobility magazine

Listen to the discussion. I don’t agree that the shift in social services spending is a temporary problem that will be “all better” after the political pendulum swings back away from the Tea Party agenda.

I’m arguing that society, technology, the economy, and politics are drastically shifting, and Medicare and Medicaid will soon change BIG TIME, so disability community leaders need to get in front of this and negotiate hard for the services we want to preserve most, because a lot of them ARE going away, and we have to get out of denial and start coping and adapting NOW!

More on the important argument I’m making here: The Cost of Denial For People with Disabilities

Nick

This Is All You Need To Know About This Year’s MDA Telethon

Posted by – September 6, 2010

Lots of people are, as always, posting about the MDA Telethon this Labor Day weekend (I recommend this piece by Laura Hershey). Usually the focus is on smashing the negative images (pity) that the MDA Telethon often conveys, and that is crucial because the Telethon brings to all corners of the U.S. the most-watched images of disability all year. But I usually focus on the help the MDA does and doesn’t provide, and how misleading the Telethon is about what they do for us “Jerry’s Kids.”

Jerry Lewis has taken a lot of heat for years over comments like “My kids cannot go into the workplace. There’s nothing they can do.” But I’m more concerned with WHY we can’t get into the workplace than with the negative comment itself. We stay at over double the general population’s unemployment rate not just because of “attitudinal barriers” (pity, seeing us as “less than,” and as charity cases, views the Telethon definitely perpetuates) but because we so often don’t have access to education, transportation, and the assistive technology that we need to succeed. Like wheelchairs.

The MDA sent out a letter to recipients last Fall, notifying us of major nationwide changes for fiscal year 2010: they will no longer help buy wheelchairs for “Jerry’s Kids.”

page 1 of scanned Letter from the MDA

page 2 of scanned Letter from the MDA
This scanned letter, passed to me by a concerned mom of kids with Duchenne’s, is not publicly available on the MDA web site, nor mentioned during the Telethon. I can only hope they don’t continue saying they provide wheelchairs on the Telethon.

The needs of those with MD are being met less and less by the MDA, and less and less by the state, cutting back brutally now thanks to the Great Recession. Now, future “Jerry’s Kids” will never again get a wheelchair with help from the MDA. Please look at these posts from the MDA forums about the changes, and MDA’s response.

I get no help whatsoever from the MDA, no matter how hard I have tried to work with them. The NYU MDA clinic essentially turned me away this year, the clinic director telling me “we don’t do metabolic disease” (nevermind that it was the Mobile, AL MDA clinic that diagnosed me with mitochondrial myopathy when I was a small child, and that their national goodwill ambassador Mattie Stepanek had it). Then, in a classy move, they referred me to a nonexistent “metabolic clinic” that when we called, said there is no such clinic. I’m totally open to discussion with MDA if they want to make this right, I would meet with an MDA representative if given the chance; but I’m not optimistic; their emphasis is simply NOT on those of us who’ve managed to survive into adulthood.

The charity model isn’t all bad; it can make a big difference in the lives of people with disabilities. Just look at the Islamic world, where people with disabilities often are getting more help (both physical and monetary) from their mosque than what we get from Medicaid! I got my first wheelchair from New Orleans MDA. But the MDA is really no longer a service charity, it’s research research research, cure cure cure, cures we’re told on the Telethon are only 5-10 years away but 20 years later are nowhere to be found.

A real charitable organization could make a huge difference in our lives, filling the enormous gaps we fall into every day, an understanding voice that could give hope for better quality of life after yet another Medicaid rejection of services. These diseases are no easy path. I REALLY NEED THE HELP! Just a shoulder to lean on and a little coordination would go a long way. But MDA is not that charitable organization, and it takes up so much “market space,” no competing nonprofit can gain the traction to provide this desperately needed assistance. That is my beef with the MDA, and I wish the discussion among disability rights circles was more in this direction.

Nick

See also, my blog about last year’s Telethon, focusing on dismantling misleading claims made on the Telethon.

Why Does Cardigan Welsh Corgi #11 Have Human Eyes? (eyedog, eyedog, eyedog)

Posted by – December 31, 2009

On the National Dog Show, which airs on NBC every year after the Macy’s Thanksgiving Day Parade, during the presentation of the dogs in the Herding group, we saw this dog, a corgi.  And unlike any of the other corgis in the show, this corgi had human eyes that totally creeped us out.


Ever since seeing that, the word “eyedog” is a part of our household parlance.

It’s MDA Telethon Time Again!!

Posted by – September 8, 2009

The MDA’s 44th annual Labor Day Telethon was on the TV. Since my family and I were on the local (Mobile, AL) MD Telethon several times, and my mom served a year as Mobile MDA’s president, I thought I should comment.

Many activists attack the MDA for fundraising based on pity. It’s true that their 1950s attitudes about disability can be really grating; the Telethon is decidedly stuck in the past, both in how they see us and their entertainment–it’s always had the kind of acts you would expect to see on The Tonight Show with Johnny Carson; this year’s guests included Tony Orlando, the new Menudo (sans Ricky Martin) and Charo. But what sticks in my craw isn’t that as much as the misleading nature of the Telethon.

That ridiculous caricature of Jerry Lewis, used as a Telethon logo for decades

That ridiculous caricature of Jerry Lewis, used as a Telethon logo for decades

Every year the Telethon gives the impression that the MDA provides significant help for the daily lives of the MD-diagnosed people they’re showing on TV, and most people (even legislators) believe this. But the MDA does not focus on assisting us on the ground, and this is my main beef with them. When I was sick and at death’s door and really needed help, they wouldn’t lift a finger. Chris Wiggins was my oldest friend, and AN MDA POSTER CHILD, and, unfortunately, like so many others in his situation, Medicaid arbitrarily stripped him of the nursing care at age 21. This ultimately led to his death. Despite the fact that Chris and his photo on posters, along with years of tireless work by he and his mom at fundraisers, probably kept the local branch open, when they really needed help, MDA declined. They wouldn’t even help raise awareness of the problem of inadequate home care for “Jerry’s Kids” over 21. Chris, and too many of his compatriots with DMD, died from lack of assistance in the community, of government neglect, not from muscular dystrophy. MDA doesn’t mention that; they focus on research. Many parents with children affected by MD work feverishly to fundraise for the MDA, thinking that when their children inevitably become badly disabled that money they helped raise will assist them in their hour of need. They’re being cruelly misled. MDA doesn’t do that; they focus on research.

Let’s look at some of the misleading claims from this year’s Telethon (from MDA.org):

Telethon claim: MDA provides flu shots to people with MD. “For only $30, you can provide a flu shot for Jerry’s Kids!”.
The truth: Just because national MDA authorizes local branches to cover flu shots, doesn’t mean all do. From what I’ve heard, one guy gets flu shots at an MDA clinic in California, but they aren’t available from Boston MDA. And I don’t know if the reborn Mobile, AL MDA does this, but I never saw the old Mobile MDA offer flu shots (prior to them getting shut down for fraud/embezzlement in 1993).

Telethon claim: MDA provides occupational therapy, physical therapy, and respiratory therapy consultations to people with MD.
The truth: I’m sure some clinics provide this, but I’ve never actually seen it or heard about people receiving this. And remember that if you don’t live near a clinic, you can’t access this, or any MDA services for that matter.

Telethon claim: Thanks to your generous donations all kids with MD can go to MDA summer camp, with no charge to the families!.
The truth: My mom was charged $500 per child. People aren’t barred from camp due to inability to pay, but many local branches directly contradict Telethon promises and bill parents.

Telethon claim: MDA provides wheelchairs for people with MD. On the Telethon, you see shiny new wheelchairs in a row, and all these happy people who got wheelchairs.
The truth: Even for young children they provide little of what is on the Telethon. They will pay up to $2000 toward the purchase of a wheelchair (only if Medicaid and/or private insurance won’t cover all of it) and these days $2k will cover about one tire on a powerchair. And even that small assistance is exceedingly difficult to get. So, needless to say, very few of us get wheelchairs from the MDA. In this annual report on the MDA web site, they brag about giving out the $2k equipment payment (for wheelchairs, crutches, braces, etc.) to 4,200 people in 2008. Think about that. Out of all the millions of MD patients in the U.S., only 4,200 got equipment help last year. There are probably 4000 people with muscular dystrophy in Alabama and Georgia alone who need chairs! The facts on the ground make MDA CEO Bob Ross’ claim that “millions depend on the MDA for their very survival” more than a bit dubious (Ross, who gets $500,000 a year salary from the MDA, “depends” on them way more than most MD patients!)

Jerry Lewis in front of the tote board at the 2007 Telethon

Jerry Lewis in front of the tote board at the 2007 Telethon

The truth is that most of MDA’s efforts aren’t immediately seen by its consumers, as their focus is research to find a cure, laboratory work that we may or may not benefit from decades down the line. The lion’s share of the roughly $1.5 billion the Telethon has raised since its inception has been put toward research, and they’ve become the largest non-governmental sponsor of muscular dystrophy research in the world.

Right now we are in a situation where the public thinks the MDA is covering much more than they actually are, and that can sometimes even complicate efforts to get public sector assistance. When I was in Montgomery arguing against Medicaid’s 21-cutoff, a state senator said, “doesn’t the MDA cover that?” He was baffled and incredulous when told no.

The MDA could change its misleading ways by a) changing their policies and widely providing the goods and services advertised on the Telethon. OR b) stop misleading the audience that they are providing goods and services to us. Just come out and say, “we mainly do research, here are some research projects we are doing.” They could interview researchers and do a lot with the truth. I think it’d be cool to learn about MDA-funded scientific breakthroughs and what they mean. Show us illustrations of how dystrophin works, a diagram of a mitochondrion! Be honest and you’ll go far.

I wouldn’t mind the Telethon as much if they practiced what they preach or preached what they actually practiced. I want the MDA to reform, but I’m not holding my breath.

Nick

Related Bloggery:
Scott Sands Alive: Begging For Charity
Danny Kodmur’s story of the UCP Telethon, and how it improved

Financial Advice From Scrooge McDuck (1967)

Posted by – August 21, 2009

My friend Dan will love this.

In Scrooge McDuck’s first **named** appearance in a cartoon (his first actual appearance was in Spirit of ’43) he teaches Huey, Dewey and Louie about the economy, from the origins of the types of the currency to taxes to inflation, budgeting and investing.

It’s good stuff. Great primer on finance for all ages.

Available in HD.

(I notice in 1967, Scrooge’s budgeting pie didn’t include health care… hmmmm.)

Nick

This Song Has Been Stuck In My Head For Over A Week!

Posted by – August 12, 2009

My other half and I have been playing and singing this ode to anesthesiologists (called anaesthetists in Britain) for over a week now! It’s really a classic parody!

Video available in HD:

My favorite lyrics from the song (sung to the tune of Total Eclipse of the Heart) are:

’cause we sometimes check the screen
and every now and then, we write stuff!
And if we have to intervene,
we inject a bit of white stuff!
And we offer to alter the lights,
or the height of the bed,
or fiddle with the radio, change the CD,
we even check the patient, occasionally!!

And if they move, we turn up the vapor,
and then we go back, to reading the paper!

Hat tip to Dr. Latte at Medical Marginalia for showcasing this hilarious song!

You can also see the Amateur Transplants perform this live here!

Nick

Donald Duck As A Nazi. Really.

Posted by – August 8, 2009

The media was once controlled by the government. During WWII, the Walt Disney Co. was under U.S. government contract for 32 short propaganda films at $4,500 each, which would save the studio after they spent four times their budget on Fantasia, which had pushed them close to bankruptcy. The films did their best to boost support for the war effort, increase military recruitment and morale, and counter Nazi propaganda.

Donald Duck starred in at least eight of these government-sponsored shorts and his popularity boomed. The most bizarre film was Der Fuehrer’s Face, based around the popular Spike Jones parody song “Der Fuehrer’s Face,” which reached #3 on the charts. In this film, Donald Duck is a

Screenshot from Der Fuehrers Face (1943)

Screenshot from Der Fuehrer's Face (1943)

Nazi. Yeah, you didn’t misread me; in this short, Donald Duck wears a Nazi uniform, does the “Heil Hitler” salute dozens of times, and helps build shells for the German Army. The point of the film is to show that “Nutzi Land” (Nazi Germany) is no Aryan paradise; it’s a totalitarian nightmare characterized by forced worship and dronish obedience to authority (hence Donald must give the “Heil” salute every time he sees a picture of the Führer (Adolf Hitler), harsh wartime rationing meaning little food, and grueling 48-hour work days on an assembly line no one can keep up with (think of Lucy and Ethel failing at packaging candy on a faster and faster conveyor belt). It’s also an actual nightmare that Donald wakes up from at the end. I totally get the purpose of this cartoon, and Disney gets the message across with some classic animation, but it’s still unsettling to see a Nazi Donald Duck heiling Hitler so much. It’s definitely jarring, especially completely outside the context of 1943 media.

Disclaimer: in the opening sequence, Japanese emperor Hirohito is playing a Sousaphone, and is depicted in an exaggeratedly ethnic and buffoonish way, typical of wartime cartoons, and today may be offensive.

Here is Der Fuehrer’s Face in high definition, which went on to win the Oscar for Best Animated Short and was later named #22 on the 50 Greatest Cartoons of All-Time list.

More videos of Donald Duck’s WWII shorts: