Thursday, January 31, 2008

Law & Order: SVU tackles Ashley X case/genetic testing

The Jan. 22 episode of Law & Order: SVU referenced the Ashley X case, in which parents in Washington State received permission to stunt the growth of their 6-year-old disabled daughter so her body would remain small, as well as having a scene in which some of the complexities of genetic testing and their impact on people with disabilities are discussed.

You can read more about the Ashley X case from the Inclusion Daily Express:
http://www.inclusiondaily.com/news/families/ashleyx.htm.

I won't be doing this often but I thought the dialogue surrounding these issues was important to preserve. I have transcribed it below. Unfortunately, Law & Order: SVU is not one of the shows NBC has on its web site with full episode replays.

This episode was called "Inconceivable" and focused on the theft of frozen embryos from a fertility clinic. The detectives talk to everyone who had an embryo in the stolen tank, which leads them to parents who mirror the Ashley X case and a Little Person who had embryos undergoing genetic testing.

The Ashley X scene:

The detectives enter the home of the parents of 8-year-old, Alicia, who has serious disabilities. The parents reveal that the embryos in question were actually from Alicia's eggs, which her mother was going to carry to term. The parents explain that Alicia's eggs were available because of the experimental procedure she is undergoing to stunt her growth.

Det. Elliot Stabler: Why?
Father: Growth plates fuse at puberty. The doctors started hers early to stop her from getting any bigger.
Det. Olivia Benson: So you are purposely deforming your daughter?
Father: To enhance her quality of life.
Elliot (sarcastically): Sounds like a great future.
Father: Alicia can't turn herself over. We carry her to the dinner table, give her baths, put her in a stroller to take her for a walk.
Elliot: So this is for your convenience?
Father: The more movement Alicia gets the better her circulation, which means fewer sores and infection.
Olivia: What you are doing is wrong.
Father: The bioethics committee disagreed.
Mother: We're not the first ones to do this. It was done once before in Washington State. (referring to the Ashley X case)

Stabler and Benson go out the front door of the home.

Elliot: Who are you calling?
Olivia: Children's services.
Elliot: Don't.
Olivia: You can't possibly be OK with what they are doing to her?
Elliot: Look, it's a nightmare but it's a bad situation no matter what they do. They think they're doing what's best for the kid.
Olivia: They are trapping her in a child's body forever.
Elliot: Parents have to make hard choices.

At the end of the episode, it is revealed that Olivia Benson applied to be an adoptive parent but has been turned down because she is single, has no family, and has a time-consuming job.

The scene involving genetic testing features the terrific short-statured actress, Meredith Eaton Gilden (http://mereditheatongilden.com/). Two other detectives, Det. Fin Tutuola and Det. Chester Lake, question her about her embryos, which were in the group stolen.

Meredith: It's humane to get rid of the defective ones. Babies born with homozygous achondroplasia usually die within a year. Their tiny chest cages cause constriction, resulting in respiratory distress. It's a nasty death.
Fin: That's what you were screening for?
Meredith: We had a little girl named Rose who had it. She died in my arms.
Chester: I am so sorry.
Meredith: My husband is also a dwarf, which gives us a 25% chance of having a baby with the condition.
Fin: So you had them weed out the embryos with the death sentence attached?
Meredith: I donated them to research.
Chester: Sounds like the clinic helped, but we heard you caused a disturbance.
Meredith: Yea, after all of that, my doctor refused to implant one of my healthy embryos.
Fin: He refused to implant because of your size?
Meredith: No, because of babies. He wanted to use an embryo that would become what you call "normal" size. I wanted an LP.
Chester: LP? Little person.
Fin: You wanted to purposely create a child with a disability?
Meredith: Size is not a disability. We have normal lifespans and lives. Why shouldn't I be allowed to have a child who looks like me? Everybody else can.
pause.
Meredith: I think someone would have noticed if the thief was 4 foot one.

Touché.

Law & Order: SVU has been doing its disability homework for this episode. The dialogue shows Olivia Benson vocalizing the the disability rights perspective in the Ashley X case, and Meredith Eaton Gilden is allowed to speak for people with physical differences who select to have children who look like them.

Anyone know where the SVU writers learned about all this? Email me and let me know.

Wednesday, January 30, 2008

Humorist David Roche's book out Feb. 5

I have seen David Roche perform and if his book is half as witty as he is as a performer, it must be great. Roche has a facial disfigurement, but his humor focuses on what others reactions to him are.

"It is not the fact of my disfigurement that wears at my psyche," he says. "It is the fear and self-doubt of others, their very human concern about their own social acceptability, their worry about being unlovable and abandoned, which they project onto me."

His book, published by the Penguin Group of New York, is called The Church of 80% Sincerity, and the book's press materials explain, "Humor is the most subversive of the arts. In 'Church,' Roche uses it well to present a new paradigm for facial difference, one which effectively challenges the prevailing social definition of disability. Disability is not a tragedy or a reason for pity. It is not something to be atoned for, nor something to be cured. Instead, Roche claims, for him it has been a gift."

His book explains "how his disfigurement brought him to a deeper level of understanding of himself and of others. He shows how all of us have an inner sense of being flawed, a fear of being unacceptable to others."

Publishers Weekly Review calls The Church of 80% Sincerity a "powerful little book that's part memoir, part inspirational handbook. For Roche, being himself has meant coming to terms with a face so severely disfigured by a benign congenital tumor that he's been spat at and called a monster. He was rejected from a seminary because, he was told, his appearance meant 'people would not respect you as a priest.' The loss of the fathers of the Holy Cross is the general public's gain. A performer and motivational speaker, Roche is frank and witty and incapable of resorting to sentimental pap."

You can find out more about David Roche at: http://www.davidroche.com/. He is also featured in the brilliant 2006 Canadian documentary, "Shameless: The ART of disability." Directed by Bonnie Sherr Klein, it explores the lives and activism of five artists with disabilities. I highly recommend it, as it truthfully depicts the multi-faceted lives of passionate, creative people. The documentary is available for purchase from the National Film Board of Canada, http://www.nfb.ca/collection/films/fiche/?id=51620.

ABC drama to add disclaimer about autism/vaccine link

The New York Times reported Jan. 29 that the ABC show, "Eli Stone," will go on as planned, despite a call for cancelling the debut episode from the American Academy of Pediatrics (AAP), which is concerned because the Jan. 31 episode depicts a link between childhood vaccines and autism. The AAP said the link has been scientifically disproved and it believes the show is irresponsible in pursuing a story line that might cause some parents to forgo vaccines for their children.

ABC says it will show the debut episode as planned on Jan. 31, but will put a disclaimer in written and voice-over form at the beginning of the show that says, "'The following story is fictional and does not portray any actual persons, companies, products or events.' A second card will direct viewers to the Center for Disease Control’s autism Web site, www.cdc.gov/autism," according to the NY Times.
http://www.nytimes.com/2008/01/29/business/media/29abc.html

Tuesday, January 29, 2008

Target, what are you thinking?

Target has long been a favorite store of mine, but recently it has dissed bloggers and created an inaccessible corporate web site, so I am unhappy to see its negative corporate behavior.

When a blogger contacted Target to complain about an ad she thought was inappropriate (it shows a woman's crotch in the middle of the Target bull's eye), she was told that Target wouldn't respond to her because it doesn't "participate with non-traditional media outlets," according to the Jan. 28 NY Times.

Doesn't Target know that what will be left when the traditional media implodes in the next few decades will be BLOGS. :-)

But it doesn't stop there. A class action lawsuit from blind and visually impaired Internet users is moving forward against Target.com, alleging that the web site is not accessible under the Americans with Disabilities Act (ADA). Target claims that the ADA applies to actual building accessibility, not the virtual world. If the case is decided in the favor of blind and visually impaired Internet users, it could have far-reaching impact in creating a more accessible online environment. http://www.inclusiondaily.com/archives/07/10/03/100307catarget.htm

All this not-so-nice behavior by Target is ironic to me because I have done several research projects looking at advertising images of people with disabilities, and Target was a pioneer in the 1980s and early 1990s in creating quality print ads using adults and children with disabilities in its sales circulars. These ads were well done and went to 30 million households in 32 states.

Target's vice president of marketing said in Marketing News in 1992 that their use of people with disabilities in their ads was so successful that they can actually point to specific products that sold much better because they were modeled by a disabled person. In addition, another ad campaign that depicted children with disabilities lead to 1000 supportive letters and was "the single most successful consumer response we've ever gotten," a VP of marketing told The Washington Post in 1991.

Target ads included not just wheelchair users but children and teens with Down syndrome, leg braces and artificial limbs. Some Target suppliers feared the ad campaign would seem exploitative, but it had the opposite effect: "There isn't a single disabled person who will say they feel they're being exploited; they are thrilled and proud that they are being portrayed as just another member of society," the Target public relations vice president said in The Washington Post in 1991.

I know that was a long time ago now, but Target seemed to "get it" back then (when they had a VP of marketing with a child with a disability). Please Target, this "non-traditional media outlet" would like you to once again work WITH people with disabilities rather than against them.

New ABC drama fuels controversy over autism/vaccine debate

The ABC drama, "Eli Stone," premieres Thursday at 10 p.m. Jan. 31, and according to a Jan. 23 NY Times story, the pilot will focus on the controversial belief by some that autism is caused by childhood vaccines. The NY Times story explains that prominent scientific organizations have dismissed the connection between vaccines and autism.
http://www.nytimes.com/2008/01/23/arts/television/23ston.html?ex=1358830800&en=35aec95143c29a6d&ei=5088&partner=rssnyt&emc=rss

In the episode, the main character, Eli Stone, takes the case of a mother who sues because she says a vaccine preservative with mercury caused her child's autism. According to the NY Times, "reams of scientific studies by the leading American health authorities have failed to establish a causal link between the preservative and autism. Since the preservative was largely removed from childhood vaccines in 2001, autism rates have not declined."

The premise of "Eli Stone" is that the title character, a lawyer, begins having visions due to a brain aneurysm, which causes him to refocus his life and law practice from defending corporations like pharmaceutical companies to instead helping "the little guy."

Now the American Academy of Pediatrics (AAP) has entered the discussion, asking that ABC pull the episode because it fears parents will receive incorrect information about the risks of childhood vaccines.

The AAP statement released Jan. 28 said: "'A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co.,' said Renee R. Jenkins, MD, FAAP, president of the AAP. 'If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation’s children.'"
http://www.aap.org/advocacy/releases/jan08elistonerelease.htm

David Kirby of The Huffington Post calls the AAP request to pull the episode "censorship." He writes, "if I were Dr. Jenkins, I would be far more concerned about real news happening in the real world -- events that not only suggest the possibility of some sort of link between mercury, vaccines and autism, but might alarm parents more than any fictional account written for ratings-grabbing mass entertainment." http://www.huffingtonpost.com/david-kirby/pediatricians-abc-and-ce_b_83472.html

The earlier NY Times article also pointed out that ABC is potentially alienating its numerous pharmaceutical advertisers with the autism/vaccine story line. "Eli Lilly & Company, which developed thimerosal (the mercury-based preservative pulled in 2001), and the two companies that now make the bulk of childhood vaccines used in the United States, GlaxoSmithKline and Sanofi-Aventis, spent an estimated $138 million for advertising on ABC last year, according to Nielsen Monitor-Plus, though little to none of it was spent advertising vaccines."

Greg Berlanti, a co-creator and an executive producer of "Eli Stone," told the NY Times that he thinks that the script shows the several sides of the autism/vaccine argument. “I think they wanted us to do our homework about all of it, which we did,” he said.

I haven't seen the show yet, but I am fearful when entertainment TV drama tries to tackle complex topics, because in ramping up the drama to keep the audience engaged, important facts sometimes get left out. And with fewer and fewer people going to news sources for information, it scares me to think someone might get a large portion of his/her medical information from a TV drama. I realize that sometimes when a TV drama tackles medical topics, it ends up educating many people who otherwise wouldn't have the information. Plots revolving around cancer, AIDS, and heart disease have led to early detection for some audience members who have gone to the doctor after seeing a TV show. But I don't know that the plot of the "Eli Stone" pilot will really "help" anyone; it will just fuel the fire of an already acrimonious controversy.

Monday, January 28, 2008

The Key of G explores disability, caregiving and interdependence

"The Key of G," a documentary about a young disabled man and his caregivers, directed by Robert Arnold, explores the world of caregiving and friendship. "THE KEY OF G tells the story of Gannet, a 22-year-old man with severe disabilities, as he prepares to move out of his mother's home and into a San Francisco apartment with three musicians and artists as primary caregivers," according to its web site,
http://www.lateralfilms.com/keyofg/index.html.

The film won the 2007 Golden Gate Award for Best Bay Area Documentary at the 50th San Francisco International Film Festival. Here's what a Jan. 24 article in the San Francisco Chronicle said about it: "Showing people with disabilities on film can be tricky. There are so many cliched images to avoid - saintly figures or frank objects of pity. In the documentary 'The Key of G,' Bay Area filmmaker Robert Arnold avoids stereotypes in showing audiences the life of Gannet, a young man in his 20s with a rare syndrome who moves into an apartment with three of his artist caregivers. Together, they not only manage but thrive in this setting, a contrast to the model of institutionalized care. . . .The film is lyrical not sentimental, and the pace is leisurely."

The film will be shown on PBS, but is also available for purchase on DVD.

I have only seen the trailer for the film, but I like what I see about it on its web site. I think more disability films need to embrace this notion of interdependence. The director told the San Francisco Chronicle, "I think that an important part is getting the concept of interdependence. The caregivers get so much back from Gannet. The living situation works as well for the caregivers as it does for him. That house becomes a center for making music and influences their art." http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/01/24/NS3EUHP1D.DTL

We all rely on each other and can learn from each other. I think many non-disabled people fear disability because they see it as a "dependent" state, when, in fact, people with disabilities are just living a more openly interdependent life. The highly regarded disability studies scholar, Paul Longmore of San Francisco State U., once explained that non-disabled people can learn a lot from the outwardly interdependent way many disabled people must live. Many non-disabled people don't see the interdependent way that they themselves live every day, relying on others to grow their food, provide their transportation, build their houses, educate their children, etc.

Sunday, January 27, 2008

NPR plans live captioning for hearing impaired audience

The system would allow deaf and hearing impaired people to read radio broadcasts live as they are happening. According to a Jan. 8 press release from the International Consumer Electronics Show (CES), the system "will leverage cutting- edge HD Radio™ technology to enable hearing-impaired people to 'see' live radio content on specially equipped receivers by applying television closed-captioning processes to radio broadcasts. The technology also will provide audio cues and voice prompts, as well as advanced radio reading services, for those visually impaired and blind."

"We're using the new [high-definition] radio system, and a tiny sliver of the total bandwidth in a special channel we created," Mike Starling, chief technology officer and executive director of NPR Labs, said in The Towerlight newspaper. "Our demonstration broadcast was very similar to how it is done for live TV captioning - using a standard court reporter system that drives our customer software and transmits it using HD radio."

The new radio system is being developed through collaboration between NPR, the Harris Corporation and Towson University to form the International Center for Accessible Radio Technology (ICART), http://www.i-cart.net/. (Full disclosure: I am an employee of Towson University but am not affiliated with the center.)

"We're working very closely with radio stations around the world to ensure they have the right technical infrastructure in place for this initiative," said Howard Lance, chairman, president and chief executive officer of Harris Corporation, in the release. "The new HD Radio transmission systems we're installing are tailor-made for this effort, as their digital capabilities will make it relatively easy for stations to transmit live textual transcripts to HD Radio receivers."

"There is tremendous need for accessible radio for sensory-impaired people, including the deaf, hard-of-hearing, blind, visually impaired, print impaired, deaf/blind, and mobility impaired," Dr. Ellyn Sheffield, assistant professor of psychology at Towson and co-director of ICART, said in the release. "There is no question this initiative will have a profound impact on the quality of millions of people's lives. Finally, sensory-disabled individuals will have access to all radio programming, as well as radio emergency alerts and vital disaster recovery information."

More than 1,500 radio stations are now broadcasting in HD Radio in the USA, according to the CES release. More than half of the CPB-qualified stations have been awarded HD Radio conversion grants by the Corporation for Public Broadcasting (CPB). According to recent estimates, by 2010, all 825 public radio stations should be broadcasting digitally.

The system ICART plans was announced at the International Consumer Electronics Show in Las Vegas, Jan 7-10, 2008. You can see a picture of what the system will look like at Gizmodo:
http://gizmodo.com/341123/first-ever-closed+captioned-hd-radio-for-the-deaf-launched-by-npr-harris-and-towson-university.

You can read the Towson University student newspaper report here:
http://media.www.thetowerlight.com/media/storage/paper957/news/2008/01/24/News/Univ-To.Host.Captioned.Radio.Research-3165156.shtml

Saturday, January 26, 2008

John Belluso play at Public Theater in NYC March 8-23

(Note: I consider theater to be a peripheral part of the "media" world because so much theater ends up on film and TV, so I will occasionally include it on this blog.)

John Belluso's "The Poor Itch" will be at the Public Theater, 425 Lafayette, in New York, N.Y., March 8-23. Belluso, who died at the age of 36 in 2006, was an up-and-coming playwright who addressed themes of disability in his work.

Belluso, who used a wheelchair, told the San Francisco Observer that having a disability gave him understanding of what he needed to do to be a playwright. “Finding the balance between participating and observing is really the key to being a good writer and a happy person,” he told the San Francisco Observer in 2005. “My disability has done nothing but help me understand that process.”

He explained to the Observer that disability would remain a theme in his work. “It is an experience that shapes my life and view of the world, and a topic that I find endlessly fascinating because there is that universal element… It is the one minority class in which anyone can become a member of at any time.”

Belluso had just begun readings of "The Poor Itch" at the time of his death. It is about a timely subject -- an injured soldier who returns home from Iraq. For tickets, visit:
http://tickets.publictheater.org/calendar/view.asp?id=5033.

I saw Belluso's "The Rules of Charity" by the Theater by the Blind (http://www.tbtb.org/index.htm) in 2007 and it was a fantastic production. That play focuses on an older gay man with cerebral palsy and his daughter who resents assisting him. It is a powerful play and addresses important themes that I believe resonated so clearly because Belluso honestly portrayed a lived experience of disability in the play. There's no sugar-coating or putting a disabled person up on a pedestal -- just authentic people who love, laugh, cry and hurt like everyone else.

Here's the NY Times obituary about Belluso:
http://www.nytimes.com/2006/02/15/theater/15BELLUSO.html

Rutgers professors refute NY Times column on ADA

The New York Times Magazine, in its Freakonomics column by authors Stephen J. Dubner and Steven D. Levitt on Jan. 20 called "Unintended Consequences," cited a 2001 study by Daron Acemoglu and Joshua Angrist in the Journal of Political Economy that argues that the 1990 Americans with Disabilities Act (ADA) led to a decline in employment among people with disabilities. That study surmises that employers were afraid of ADA discrimination lawsuits so they avoided hiring workers with disabilities. You can read the full NY Times column here:
http://www.nytimes.com/2008/01/20/magazine/20wwln-freak-t.html.

When that study came out, much controversy erupted about it among disability researchers. And the disability community was obviously concerned if important civil rights legislation like the ADA was actually doing harm.

However, a number of disability and employment researchers from universities like Cornell and Rutgers had different findings. Cornell University researchers at the Employment and Disability Institute there investigated the findings of the original study, known in disability circles as the anti-ADA study. They found that although employment of some people with disabilities might have declined, it was not due to the Americans with Disabilities Act. Possible problems in the anti-ADA study were the data used and definitions of disability.

Douglas Kruse and Lisa Schur of Rutgers University School of Management and Labor Relations conduct disability employment research and they also found problems with how the anti-ADA study was done. Their 2003 paper in Industrial Relations said, "Given the problems in measuring who is covered by the ADA, there is reason to be cautious of both positive and negative findings."

They wrote a letter to the NY Times Magazine explaining the problems with the anti-ADA study, which I hope the NY Times will publish, but if they don't, I have their permission to publish it here:

To the editor of the Magazine section,

The Jan. 20th Freakonomics column on “Unintended Consequences” uses as an example some initial research on the Americans with Disabilities Act (ADA), which concluded that this law, contrary to its intentions, hurt the employment of people with disabilities. A re-analysis of these data by Cornell researchers, however, showed that the ADA did not hurt employment among people most likely to be covered by the law: people with more severe and long-lasting disabilities. In fact, employment rates appear to have increased among some groups in this population. Our own research using other data showed that there was no initial drop in employment after the ADA became effective. It is true that employment of people with disabilities has generally stagnated in the past 20 years, but several studies have found that the ADA played no causal role. Instead, primary blame can be put on work disincentives in federal disability income programs. The low employment rates can be addressed by a variety of promising public and private policies to increase recruitment and retention of employees with disabilities, as described in a recent report from the federal government’s National Council on Disability. We certainly do not dispute that laws can have unintended consequences, but recent research shows that the ADA is not a valid example.

Douglas Kruse, Professor
Lisa Schur, Associate Professor
School of Management and Labor Relations
Rutgers University

Friday, January 25, 2008

Super Bowl ad features Deaf culture joke

A PepsiCo ad during the 2008 Super Bowl will focus on a joke common in the deaf community. Two guys are going to their friend's house for the Super Bowl. When they get to the street, they forget which house is his. SO to figure that out, they honk loudly and watch the lights go on and the dogs bark. Then they go to the house that remains dark -- that's where their deaf friend lives. The first 60 seconds of the ad will have no sound, which PepsiCo hopes will grab the attention of its Super Bowl audience.

Two PepsiCo employees, Brian Dowling and Darren Therriault, who are both deaf, are featured in the ad. The ad is the idea of Clay Broussard, a supply and logistics manager at PepsiCo in Dallas, who is hearing, but is involved with the deaf community because he attends a church in which all the services are in sign language.

National Association of the Deaf president Bobbie Beth Scoggins told The Associated Press she sees this ad as an historic event, because it is unusual for an ad featuring American Sign Language to receive such prominent play.

"I was glad to see this part of deaf culture awareness shared in a most clever way," Scoggins told The AP.

For more information: http://www.msnbc.msn.com/id/22824530/from/ET/.

Thursday, January 24, 2008

Top disability rights stories of 2007

Dave Reynolds, editor of Inclusion Daily Express, has announced the top disability rights stories from 2007.

They cover a wide range of topics, from Target.com accessibility to Ashley X to restoring the intent of the Americans with Disabilities Act. Check them out at: http://www.inclusiondaily.com/news/top2007.htm.

Tuesday, January 22, 2008

Man without legs photographs staring around the world

Montana State film student Kevin Connolly was born without legs and became curious about the constant staring that meets him at every turn, so with camera in hand, he rode his skateboard internationally to document the staring he experiences. (He prefers a skateboard to a wheelchair.)

He traveled through 15 countries documenting the stares he gets. The Christian Science Monitor wrote about him in its Jan. 22 edition (http://www.csmonitor.com/2008/0122/p20s01-ussc.html).

Connolly took 32,000 photos and has created an online exhibit, called The Rolling Exhibition at http://therollingexhibition.com/. It's a wonderful exhibit, which allows the viewer to see the world from a unique perspective. Many of the images are visually stunning because of the upward angle that captures aspects of the scene that one usually doesn't experience. I know its theme is the staring but the composition and subjects on the street make many of the images pure artistry. If this is any indication of his documentary abilities, I will be there to buy tickets to his first film.

Renascence allows new media artists to shine in NYC

VSA arts and arts>World Financial Center will host "Renascence" for its NY premiere in Febuary 2008. The international juried new media exhibition showcases eight artists with disabilities who use new media to convey their personal experiences with disability.

The exhibition will run from Feb. 5 to March 16 at the World Financial Center Courtyard Gallery located in lower Manhattan.

For more information, visit: www.vsarts.org/renascence.

Vote for the top disability rights news of 2007

Inclusion Daily Express, an international disability news service, is asking its readers to vote for the top disability rights and advocacy news of 2007. http://www.inclusiondaily.com/news/07/choicetop2007.htm

Inclusion Daily Express is an excellent resource for news about disability topics. Dave Reynolds, editor of Inclusion Daily Express, created it in 1999. "Inclusion Daily Express chronicles the barriers people with disabilities face as they advocate to live and direct their lives. While many problems are the same ones most people who do not have disabilities must address, some seem more common with people who make up this diverse group (and the people who care about them), such as poverty, discrimination, injustice, vulnerability, inaccessibility, loneliness -- being on the outside."

Check it out at: http://www.inclusiondaily.com/.

CBS News investigation sheds light on disability benefits rejections

CBS news should be lauded for revealing a horrendous situation within the Social Security Disability Insurance (SSDI) program -- that 16,000 people died awaiting a decision about their payments and many more are rejected as "not being disabled enough" to qualify for benefits. It sometimes takes three years for the federal government to decide if a person with a disability deserves payment, and when decisions are made, two of every three people who apply are rejected. You can see the CBS report here:
http://www.cbsnews.com/stories/2008/01/14/cbsnews_investigates/main3712627.shtml?source=RSSattr=HOME_3712627

The people rejected have legitimate disabilities and should receive the SSDI that the federal government has promised all Americans if they become too disabled to work, in my opinion. Most of the disabilities mentioned in the CBS piece ARE disabilities as defined by the federal government in the Americans with Disabilities Act. One person mentioned in the story had a fracture in his spinal cord, another had a mental illness, and one person used a wheelchair due to a leg amputation.

Disability activist Linda Fullerton, founder and director of the Social Security Disability Coalition (http://groups.msn.com/SocialSecurityDisabilityCoalition), was a source in the CBS story and told me about it. She wishes many more in the news media would take this grave injustice to Americans with disabilities seriously. I agree. Television news especially needs to take notice of this crisis. TV is how most Americans get their news, and from a journalistic standpoint, this is a significant story for local, national and cable TV news because it has legitimate and newsworthy stories and images.

Some of the major print media have written some on the crisis and even editorialized about it. The New York Times took President Bush to task for the SSDI bureaucratic delays in a Dec. 11, 2007 editorial, which followed a page 1, 1700-word news story on the problem Dec. 10, 2007. The Washington Post did a shorter story about the topic in May 2007. The Washington Bureau Chief of The Buffalo News did a 1400-word in-depth story as well in May 2007.

Even with all the brouhaha about the continuing ratings slump at CBS Evening News with Katie Couric, a bad night for CBS News reaches 6-7 million viewers and a good night for the other networks has about 9-9.6 million viewers. (The week of Jan. 7, 2008 drew 6.8 million viewers for CBS News, according to TVNewser.com.) I am very glad The New York Times and The Washington Post are covering the SSDI backlog issue; they are important papers of record that reach the agenda setters of America, but in terms of reaching the average American, their numbers pale in comparison. The NY Times circulation on Sunday is about 1.6 million and The Washington Post's is around 900,000. (This Pew Center report explains where people get their news: http://people-press.org/reports/display.php3?PageID=835).

I personally come from the world of print newspapers and have a loyalty to them, but these numbers speak for themselves. To truly get a news story to have some traction with the average person in America, it needs to be on TV and the Internet. And the SSDI backlog/rejections is a story topic that has the potential to affect all of us; therefore, in my opinion, every TV station in America should begin working on their own local version of the story.

Monday, January 21, 2008

Krip-Hop article contributes to magazine award

Utne gave the 2007 Independent Press Award for General Excellence in Magazines to ColorLines and cited its article on "The Rise of Krip-Hop," about rap artists with disabilities, as illustration of its diverse arts coverage.

The 9-year-old magazine says it is a "national, multi-racial magazine devoted to the creativity and complexity of communities of color." The Krip-Hop article is not available online but some of ColorLines content is: http://www.colorlines.com/. For more about Krip-Hop, the person to know is Leroy Moore, who has produced two Krip-Hop mixtapes of disabled artists from around the world. He is an African American poet, writer, speaker and activist with cerebral palsy, who has been making presentations on race and disability for 13 years. For more about him, visit:
http://www.leroymoore.com/index.html.

ColorLines seems to be touching the heart and soul of race and politics with its content. There's an interesting media article in its current Jan/Feb issue, in which multimedia journalist Farai Chideya discusses her optimism about the future of journalism, especially online. It can be found at: http://www.colorlines.com/article.php?ID=269. Chideya is an early innovator in online journalism, having begun her Pop + Politics blog (http://www.popandpolitics.com/) in 1996 before most journalists knew what to do with the Internet. Pop + Politics is now affiliated with USC Annenberg School of Communication and also does training in new-media journalism.

Sunday, January 20, 2008

Touch me someplace I can feel

I thought that would get your attention. :-) Actually, it is the title of a new documentary about John Callahan, the provocative artist who bills himself as the quadriplegic cartoonist. The Jan/Feb Utne Reader had a brief article about the new documentary from Dutch director Simone de Vries. Utne calls it an "intimate profile of an artist whose work cuts through hypocrisy with minimalist simplicity and outrageous political incorrectness."

The documentary won best short documentary at the Dutch Film Festival in Oct. 2007 and is now available on DVD. But unfortunately for us Americans, it must be purchased in Euros so is almost double the cost. Here's the web site with more info about the film and some pictures and cartoons from the film: http://www.selfmadefilms.nl/eng/callahaneng.htm.

The documentary weaves together interviews with Callahan and famous friends like Robin Williams and Tom Waits, along with his cartoons and complaints about his cartoons, according to Utne. Callahan also has begun a new career as a singer/songwriter, and he is featured on the soundtrack of the film.

A number of years ago I heard that Robin Williams was set to star in a Hollywood film about Callahan's life. (That's apparently how they got to know each other.) It could have been a great project because if it had truly portrayed Callahan's life, it should have been irreverent and bawdy.

For everything Callahan, visit: http://www.callahanonline.com/index.php.

Saturday, January 19, 2008

Brilliant TV show that few watch: The Wire

Called "broadcast literature" and rightfully so, "The Wire" is a complex exploration of race, poverty, policing, drug culture, education, labor, the media, city politics and a myriad of other social issues in Baltimore, Maryland. It is is currently in its fifth and last season on HBO and sadly only had 1.185 million viewers for its Jan. 13 episode. Sad, sad, because this show is really representing issues that never see the light on TV.

What, you may ask, does this have to do with media and disability, the topic of this blog? First, the focus of "The Wire" has always been on the most impoverished residents of Baltimore, a city that is one of the poorest of its size in the USA, according to the U.S. Census Bureau. The city of Baltimore has a poverty rate of 24 percent, about double the national rate. And to put it bluntly, poverty contributes to children and adults acquiring disabilities.

Second, the Jan. 13 episode of "The Wire" had a subtle disability theme. This season of the show is focused on the media, and an aggressive reporter at The Baltimore Sun (a fictional newspaper in the show because they use character names?) goes out to do an uplifting opening day feature about the Orioles, but instead of lots of happy, baseball-loving fans, he finds grumpy, un-quoteable people who really don't care about opening day. But later in the show, he comes back into the newsroom with an amazing tale of a disabled teen who wheeled himself to the game because of his love of baseball. The kid was supposedly disabled from gang crossfire a few years before. The editor LOVES this angle, because editors know that anytime they can work a person with a disability into a story it ups the drama and may get more readers. :->

But the editor wants a picture of the disabled kid to run on page 1. . . .and that's where the journalistic drama begins. The reporter, who just wants to make a name for himself so he can get to a "better" newspaper, throws out a litany of excuses. But the editor (played brilliantly by Clark Johnson) wants that picture! So being a good a journalist, he knows that The Sun would have covered a kid disabled in gang crossfire but finds no evidence of the paper ever doing such a story.

The editor's "Jayson Blair radar" (http://www.slate.com/id/2082741/) goes up, and he's concerned about running a story about a kid who no one can verify exists. But his boss is looking for just this kind of "pull at your heart strings" story for the front page and overrules him with a figurative "run that baby." (There's an old Bloom County cartoon that pictures a kid in a wheelchair eating ice cream on a beautiful day in front of a fountain and the editor in the last frame of the cartoon sees the picture of the kid and exclaims "run that baby!", which I have always felt is a great visual representation of what is really going through some editors' minds.)

All this to say, in my experience "The Wire" is right on the mark, because some journalists, and especially editors, put way too much emphasis on using people with disabilities as the inspirational main characters in fluffy feature stories.

I have always advocated that people with disabilities and disability issues should be covered in the news more rather than less, but when it comes to fluffy features, this inspirational dreck does more harm than good, IMHO. The trouble with inspiration is that the flip side of its message is tragedy. HolLynn D'Lil, a wheelchair user, explained in Mainstream magazine several years ago that, "Being told that you're inspirational when you're doing something ordinary is an assault on your self-concept. Suddenly you're reminded once again of the traditional attitudes about disabilities, that no matter who you are, what you do, how you feel, to some people you'll always be a tragic figure."

This isn't the first time I have written about this topic, so if you want to read more of my thoughts, here's an essay that I published in The Baltimore Sun (ironic, I know) in 2001:
http://pages.towson.edu/bhalle/ore-dis.html.

Thursday, January 17, 2008

BBC reports abuse of children with disabilities

A Jan. 15, 2008 report on BBC World News America showed illegalities in social care homes for children with disabilities in the Czech Republic. The Czech Republic banned the use of cage beds in care homes in 2007, and the BBC investigated reports that cage beds were still in use. The European Union Convention on Human Rights has also banned cage beds. Cage beds are as horrible as they sound. They are a metal cage with a mattress in floor and the children and teens with disabilities stay in them 24/7 it appears. (One teen in the BBC report had been in a cage bed for 12 years.)

As someone who teaches journalism, I am not usually a fan of the overuse of hidden camera reports on TV, but in this case the BBC truly was using them for the greater good. They visited eight care homes in the Czech Republic and found five still using cage beds. The BBC reporter, Clive Myrie, then took his footage to the Czech Minister of Social Affairs, who said he would begin immediate inspections.

You can read Myrie's report at:
http://news.bbc.co.uk/1/hi/world/europe/7189556.stm

One high-profile European, Harry Potter author JK Rowling, has been fighting against the use of cage beds for several years. In 2004 she wrote to the Czech Republic President asking him to ban cage beds, calling them "torture."

Here's an article from Inclusion Daily Express about it:
http://www.mncdd.org/news/inclusion-daily/2004/07/071304czechadvabuse.htm

I hope the American media take note of important stories like this and start investigating problems in U.S. nursing homes for their own news reports.

Tuesday, January 15, 2008

Deaf actor in "There will be blood"

Russell Harvard, a Gallaudet University student, appears in the new film starring Daniel Day-Lewis, "There will be blood." Harvard plays Day-Lewis' son as an adult. The film is about a turn-of-the-century oil prospector and is based on the Upton Sinclair novel, Oil!.

Harvard also appeared in an episode of "CSI-NY" in December 2007.

Senate candidate uses clever disability humor in ad

Steve Novick is running as a Democrat for Senate in Oregon. His campaign ad uses humor to point out that he is a person with a disability. It's a clever ad because he is using his uniqueness as a person to say he won't be a typical politician.

You can watch it here: http://www.votehook.com/.

Monday, January 14, 2008

New AMC show features actor with cerebral palsy

"Breaking Bad," a new show on AMC, has a main character with cerebral palsy and is played by an actor with CP, RJ Mitte. He plays the son of the main character (played by "Malcolm in the Middle's" Bryan Cranston), who is diagnosed with terminal cancer and decides to start making meth.

www.amctv.com/originals/breakingbad/:

About the Show
Break Bad (v.) 1. To challenge convention 2. To defy authority 3. To raise hell
Chemistry: the study of change. Apply heat and, boom, no going back. Meet Walter White, high school chemistry teacher. Sleepwalking through life when, boom, a terminal diagnosis changes everything. Liberates him. Empowers him to use his chemistry skills anew: to man a rolling drug lab and finance the future for his struggling family. It's an uncontrolled experiment with the American dream. And it finally wakes him up. BREAKING BAD: Change the Equation.

The series premieres Sunday, January 20 @ 10PM 9C.

RJ Mitte

Young actor RJ Mitte arrived in Hollywood from Lafayette, LA, in 2006 and immediately landed a talent manager and began his acting training.Born with cerebral palsy, RJ first began as a background actor while honing the auditioning process for commercials and eventually landed episodic roles in the hit shows Grey's Anatomy and Hannah Montana.In 2007, RJ was cast in Breaking Bad, his first major role playing a teenager born with cerebral palsy. And while the role may have seemed tailor made, like all actors, RJ earned the right to play this character by working on his craft, learning the script, and overcoming personal challenges: he works diligently to overcome what most people take for granted like sitting for extended time periods, muscle contraction, and challenges with articulation. Yet, unlike other actors, RJ had to relearn some of the physical demands of cerebral palsy that he had overcome from years of therapy by using his acting skills to play the role of Walt White, Jr.

UK blind group likes Keira Knightley's voice

From a 1-6-08 NY Times article about Keira Knightley: "Just listening to her is sometimes an adventure, which may be why the Royal National Institute of Blind People recently deemed her voice the second-sexiest in Britain. (No. 1 was the considerably older Sean Connery.)"

Does anyone know about this kind of rating in the USA?

Welcome to the Media dis&dat blog

The focus of this blog is the news and entertainment media and people with disabilities. . . .the good, the bad and the mediocre. When I see something about people with disabilities in the media, I plan to post it to the blog. Sometimes I will comment and sometimes I won't. But I invite you to tell me about what you see in the media and what you think about it.

Many times people with disabilities are invisible in the media and my hope is that this blog will give more visibility to them. In other instances, the media use negative stereotypes or inaccuracies to write about or portray people with disabilities. So I want to critique those problems. And sometimes the media do get it right, and then I can hand out a few compliments.