Friday music: Don't Let Me Be Misunderstood by Nina Simone

Link to a YouTube video here. The images in the video present a montage of photos about the American Civil Rights movement, set to Nina Simone's 1964 recording of "Don't Let Me Be Misunderstood."

Lyrics to the song:

Baby, you understand me now
Yet sometimes you see that I'm mad
But don't you know that no one alive
Can always be an angel
When everything goes wrong you see some bad

But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

You know sometimes, Baby, I'm so carefree
With a joy that's hard to hide
And then sometimes again it seems that all I have is worry
And then you're bound to see my other side

But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

If I seem edgy I want you to know
That I never mean to take it out on you
Life has it's problems and I get more than my share
But that's one thing I never mean to do
Because I love you
Oh, Oh baby, I'm just human
Don't you know I have thoughts like anyone
Sometimes I find myself long regretting
Some little foolish thing some simple thing that I've done

Because I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

Don't let me be misunderstood
I try so hard to, please
Don't let me be

While the seeds of the lyrics came from a songwriter's spat with a girlfriend, the song and Simone's recording are associated with the Civil Rights Movement. But a more personal view of her performance of the song might be seen with the knowledge that she was apparently bipolar:

Simone had a reputation in the music industry for being volatile and sometimes difficult to deal with, a characterization with which she strenuously took issue. In 1995, she shot and wounded her neighbour’s son with a pneumatic pistol after his laughing disturbed her concentration. She also fired a gun at a record company executive whom she accused of stealing royalties. It is now recognised that this ‘difficulty’ was not just the result of an overly-perfectionist rigor, but her raging outbursts and diva-like extremes were actually the result of a psycho-medical condition, most probably a bipolar disorder or borderline personality disorder. Simone reluctantly took medication for her condition from the mid sixties on. All this was only known to a small group of intimates, and kept out of public view for many years, until the biography Break Down And Let It All Out written by Sylvia Hampton and David Nathan revealed this secret in 2004.

Designer Babies and the Pro-Choice Movement

I'm suffering from Acute Blogging Malaise. So, I'll just post the link to this article and hope to say something relevant in comments if discussion on it erupts.

"Designer Babies and the Pro-Choice Movement" by Rebecca Tuhus-Dubrow in the current Dissent. A few excerpts:

In vitro fertilization (IVF) does not merely help the infertile to procreate; increasingly, it allows parents to determine the genetic makeup of their offspring. Initially, preimplantation genetic diagnosis (PGD) targeted severe childhood diseases, such as Tay-Sachs and sickle cell anemia. Now, more parents use it to screen out genes for late-onset, treatable diseases, such as colon cancer; sex selection is also popular. According to a 2006 survey conducted by the Genetics and Public Policy Center at Johns Hopkins University, 42 percent of 137 IVF-PGD clinics allowed parents to select for gender. Scientists predict that parents will be able to choose such characteristics as blue eyes or curly hair. Less certain, but plausible, is that scientists will be able to identify genes for more complex traits, such as intelligence and homosexuality. Genetic engineering, which will enable not merely the selection but the insertion of desired genes, is on the horizon. In the United States, this rapidly advancing technology is unchecked by any regulatory mechanism.

and

Even without the borrowed buzzwords, the pro-choice movement would be uneasily close to the issue. Historically, pro-choice arguments have focused on the right to privacy and freedom from government interference. Legally, those are the terms that define reproductive rights. The landmark Supreme Court cases Connecticut v. Griswold (1965) and Roe v. Wade (1973) recognized the right of individuals to control their reproductive destinies. Legal scholars predict that when the question of selecting the traits of offspring inevitably arrives in court, it will be considered in this framework.

Like it or not, pro-choice groups, then, will be compelled to take a stand. They will have to distinguish their concept of reproductive rights from that advanced by neo-eugenicists and to decide whether and how to endorse regulation of reproductive technologies without jeopardizing already tenuous rights. But along with these challenges come opportunities. By incorporating concerns about the abuse of reproductive technologies into a pro-choice platform, the movement can shift away from an individual-liberties paradigm toward a social justice orientation; move away from a single-issue focus on abortion toward a more comprehensive agenda; and form coalitions with other segments of the left.

and, although race, class and GLBT issues related to choice are prominently covered, the only explicit mention of disability and disability rights activists is bolded below:

This issue creates strange bedmates. The common political assumption is that conservatives would oppose the potentially radical change promised by reprogenetic technologies, while liberals would embrace the scientific progress they represent. And indeed, the religious right, concerned about the embryo and the blasphemy of playing God, condemns them, while some liberals are more inclined to welcome them on the grounds of “progress”—and, perhaps, in opposition to “culture of life” priorities. At the same time, economic libertarians oppose regulation of this three-billion-dollar-a-year industry, and a fringe of neo-eugenicists wants to create a super race. Qualms on the left include the potential exacerbation of inequalities, the eugenic overtones, and the environmental implications of meddling with nature.

Other progressive contingents have their worries. Disability activists are wary of technologies that essentially aim to eliminate their community. Gay and lesbian people have an especially complex relationship to assisted reproductive technology. I spoke to staff at the GLBT (Gay, Lesbian, Bisexual and Trans-gendered) Community Center in New York, who said that to the extent that it helps them have genetically related families, they welcome the technology. But if a “gay gene” is ever identified, their communities, too, could be threatened. Many feminists are troubled by sex selection, but fear that regulating any aspect of reproduction could jeopardize abortion rights.

Go over and read the whole article here.

One more photo

These group action pics give me happy chills.



Image description: From observer rachelleb, this color photo is taken from several stories above the street of dozens of ADAPT protestors , mostly in wheelchairs, in the far right lane of Chicago's State Street rolling single-file toward the headquarters of the AMA this past Monday.

I think it's safe to say. . .

that folks in wheelchairs have the edge in creating successful sit-in protests. Not that it's all about sitting around, but we do bring extra immovable objects with us everywhere we go. Immovable if we choose to make them immovable, that is.

This post is to notify feed readers of updates to the post just below on the ADAPT actions this week in Chicago. Specifically, the local Chicago TV news coverage links at the bottom of that post should be easier to access now.

Here's another video, this one from Chicago's Fox TV on Tuesday's protest and blockade of the Thompson Center.

The image above is another photo from Tim Wheat, showing dozens of people in wheelchairs filling a city sidewalk and the entrances to the offices of the American Federation of State, County and Municipal Employees (AFSCME), a union that persists in putting their members' incomes above the freedom of the disabled people housed in the institutions they serve. You can read Tim Wheat's diary of Wednesday's events at the ADAPT site.

Also check out the blog coverage of Galen Smith, an activist at his first ADAPT actions. He writes of Wednesday's action against the union:

We got periodic updates from our negotiators and learned that it was not going well. First AFSCME tried to counter the letter we gave them with a letter of their own. They expected us to sign a letter saying that nursing homes should stay open!! Then they said they would call their national office. Eventually they left the table and said they weren't coming back. When negotiations broke down the police moved in to start arrests.

AFSCME had 120 ADAPTers arrested today - for picketing. The irony was not lost on us as we chanted...

The People United Will Never Be Defeated!

...a chant that has long been used by striking unions.

The arrest process extremely relaxed. An officer approached me where I was standing blocking the alley and warned me that if I didn't move I would be arrested. I didn't move. Then he told me to follow the line of people heading for arrest. There was no police escort as we walked about a block and a half to line up on a sidewalk and wait for our citations. ADAPTers chatted with the officers as they wrote up our citations who laughed and joked with us. When the officer handed me my ticket he smiled and said, "You've been very bad. Here's your ticket" as he patted me on the shoulder and sent me on my way with a chuckle.

Updated: ADAPT action in Chicago

"Individually, no one's more invisible
than a person in a wheelchair.
Collectively they're pretty spectacular."
Source

How totally exciting and energizing is this?









Image descriptions: The four photos taken by Tim Wheat are part of ADAPT's coverage of the week's events here. The first is of Marca Bristo, CEO of Chicago's Access Living (the ILC) and former chairperson of the National Council on Disability, in a power wheelchair holding a Chicago Sun-Times newspaper layout of coverage from a 1992 protest where the large headline reads "Disabled take home-care protest to AMA's doorstep." She sits next to Laura Hershey, Denver writer of Crip Commentary, also in a power wheelchair outside the American Medical Association's headquarters in this 2007 protest.

The second photo is inside a building, taken from above, showing a half dozen activists blockading the entrance. Some people are sitting in power wheelchairs and scooters, many wear ADAPT t-shirts.

The third photo is outside the AMA headquarters. A woman is writing "Community Choice" on a large glass window with a red paint marker and activists are visible lining the outside of the building along the glass in the background. The Community Choice Act, Senate Bill S. 799 and House Bill H.R. 1621, seeks to break the institutional bias by using existing funding that now pays for nursing home coverage to provide the choice of community-based services instead.

The fourth photo shows a man, surrounded by other wheelchair users, chanting or hollering. In comments below, it's suggested he's also signing as he chants. Perhaps the sign for "Now."

From ABC Chicago channel 7: "Disability activists wrap up week of Chicago protests" (video at link too):

September 12, 2007 (CHICAGO) - Hundreds of activists for the disabled protested again Wednesday in downtown Chicago, demanding better housing conditions. They are angry with Illinois government officials for spending too much money sending the disabled to nursing homes.

Wednesday was the last day of what Adapt calls its fall action. The disability rights group has targeted medical and governmental agencies since Monday in its push for access to more community-based services.

Hundreds of members led a vocal call for change to the system that they say gives them only one option - care in an institution.

Members of Adapt parked their wheelchairs in front of the Chicago headquarters of the American Federation of State, County and Municipal Employees Union, at 29 N. Wacker.

They blocked the entrances and crowded into the lobby in a demonstration over housing options for people with disabilities.

"Everyone deserves a choice and right now, choices don't exist," said Gary Arnold of Adapt. "It's institutions or nursing homes or nothing for thousands of people."

Adapt is fighting for the Community Choice Act, a bill introduced to Congress earlier this year. It would allow patients with disabilities to access care in and around their homes, rather than rely on care from a nursing home.

Chicago's WGN covered the week's activities in video. The three individual clips cover the protest at the headquarters of the AMA and the shutdown of the Thompson Center. Here, here and here. Those links should work (for me, each opens three windows: the main WGN page, a WGN video troubleshooting page and the actual news video in Windows Media Player, preceded by a 20-second ad). Let me know if that doesn't work for you, please.

Update: I've added some info about the people in the above photos to the in-text image descriptions since commenters have helpfully identified the activists. Also, the links to WGN videos just above should now be a little easier to access, thanks to Stephen Drake of NDY (Check the Not Dead Yet blog for day-by-day coverage of the events and additional photos. Steve has been my source for all the links in this post, along with ADAPT itself.)

Wagadu journal on disability

The summer volume of the Journal of Transnational Women's & Gender Studies is a special issue on “Intersecting Gender and Disability Perspectives in Rethinking Postcolonial Identities.”

And it's all available online here.

Ad Council "Crutches" PSA

The Ad Council has a campaign called "Don't Almost Give" and a series of public service announcements that includes one called "Crutches." Here it is with the other five ads at their website -- it's the second one. And here it is at YouTube:



Description: The 30-second ad shows a outdoor cement staircase and a man on wooden crutches slowly climbing the stairs one step at a time. He climbs about 6 steps during the brief ad. The male voiceover: "This is a man who almost learned to walk ... At a rehab center that
almost got built ... By people who almost gave money ... Almost gave ... How good is almost giving? About as good as almost walking."

I heard about this ad on a disability listserv, but eeka at One Smoot Short of a Bridge has already written on the condescending attitude. She sums it up very well:

Sure, the guy deserved to have better care, and presumably could have recovered more fully. But the inaccurate and pitying language needs to go. What's he doing right there in the film clip? He's walking. He's getting places. He's living his life. Even if the reason for his disability was something preventable that we should be fighting to change, the way to accomplish this isn't by describing the way he gets around as "almost walking." I suppose it might be different if he were a real individual who personally describes his disability in this way, but since he's an archetype, it comes across as describing people with disabilities as "almost" doing things. This kind of view can be dangerous, because when we're all sitting around a table, if we're stuck on the idea that one of the people "almost" walked to the meeting, we're going to unconciously feel that he has less to offer than people who fully got to the meeting, even though we're all there in the end.

Friday music: Evelyn Glennie

Evelyn Glennie is a talented percussionist who is also profoundly deaf. As she explains, media attention that focuses on the state of her hearing misses the point:

Deafness is poorly understood in general. For instance, there is a common misconception that deaf people live in a world of silence. To understand the nature of deafness, first one has to understand the nature of hearing.

Hearing is basically a specialized form of touch. Sound is simply vibrating air which the ear picks up and converts to electrical signals, which are then interpreted by the brain. The sense of hearing is not the only sense that can do this, touch can do this too. If you are standing by the road and a large truck goes by, do you hear or feel the vibration? The answer is both. With very low frequency vibration the ear starts becoming inefficient and the rest of the body's sense of touch starts to take over. For some reason we tend to make a distinction between hearing a sound and feeling a vibration, in reality they are the same thing. It is interesting to note that in the Italian language this distinction does not exist. The verb 'sentire' means to hear and the same verb in the reflexive form 'sentirsi' means to feel. Deafness does not mean that you can't hear, only that there is something wrong with the ears. Even someone who is totally deaf can still hear/feel sounds.

Here is a YouTube video of Glennie's collaboration with Icelandic singer Björk for the song "Oxygen." The visuals are simply a collage of photos of Björk, but that's Glennie playing behind Björk's vocals. The song is part of Glennie's 1998 greatest hits compilation.



Here's a 34-minute video of a presentation she gave on "How to listen to music with your whole body." There doesn't seem to be a transcript of her words (how sadly ironic is that?), but she talks about and demonstrates the difference between technically performing a piece of music and playing it as an artist who listens to and creates nuance.



And here's an excerpt from the documentary Touch The Sound:



Bionic Ear blog mentioned Glennie recently here.

Alison at Noesis writes about the lack of transcript for that TED speech here.

"Stay in your house!" part 2

Image description: A young white woman with curly hair sits in a power wheelchair on a city sidewalk. She smiles over the orange placard she holds that reads "Gimps are Hot, Crips are Sexy, We Want Access Too!" The sign is vertical and reaches from her shoulders to her mid-calves as she sits. Further description from the Flickr photo source sissyboystud: "Sarah holding a sign at our ADAPT Youth Summit Action. This sign is targeted at a nail salon with an inaccessible entrance. We have a right to be beautiful and pampered too!!"









Image description: Glastonbury in 2007. A man in a manual wheelchair smiles towards the camera as two men drag him backwards through thick viscous mud at a large gathering where the ground is mud everywhere. The man's feet are covered in mud, as are his gloved hands and the wheels of his chair. I think there's a concert stage and big screen in the far background. Flickr photo credit to Tonymc.









Image description: Three senior citizens are sitting in fancy dress in a banquet room with a table with flower arrangements behind them. The woman at left is in a lacy taupe dress and matching jacket with a white hat with a gauzy veil attached. She is reaching out and holding the hand of the man at left, seated in a wheelchair. He's wearing a traditional tuxedo with a boutonniere on the lapel. Between them is a woman sitting with hands folded in her lap across some papers. She's smiling at the couple. It looks like a wedding. Flickr photo credit to dosbears.

Another insult and apology

From the Washington Post. Jerry again, during yesterday's telethon:

The 81-year-old showman -- prowling about the stage during the live telecast Monday in Las Vegas -- was goofing around and dodging his cameraman, then went into a ramble about imaginary family members.

"Oh, your family has come to see you," he said, speaking to the camera and gesturing toward thin air.

"You remember Bart, your older son," he said, and motioning toward another unseen character, "Jesse, the illiterate f-----.

"No," Lewis said, quickly stopping himself before continuing.

Jesse is, apparently, the gay relative. I'm guessing he rarely comes to Lewis' imaginary family functions when the bigot himself is there. After all, Bart gets to be "the older son" and he is, well, illiterate. . . .

Here's CNN with the video clip. I can't imagine what he'd have said when he got to the sad, crippled little imaginary grandchild with MD.

Wait. Yes, I can.

But it all seemed to work out well for everyone in the end.

Gay & Lesbian Alliance Against Defamation (GLAAD) President Neil G. Giuliano criticized Lewis this morning:

“Jerry Lewis’ on-air use of this kind of anti-gay slur is simply unacceptable,” said Giuliano. "It also feeds a climate of hatred and intolerance that contributes to putting our community in harm's way. Our nation’s media have done an admirable job this year holding public figures accountable for their use of anti-gay slurs, and I hope they continue to do so with Mr. Lewis."

Giuliano said that GLAAD is contacting Lewis’ representatives today to request a meeting with him. "We want to sit down with him, help him understand why these words are so hurtful, and give him an opportunity to raise public awareness about the destructive impact of these kinds of anti-gay slurs, even more so in attempted humor.”

And by this afternoon, all was forgiven after Lewis issued an apology for a "bad choice of words."

GLAAD responded:

“GLAAD thanks Jerry Lewis for his swift and direct apology for this incident,” stated Giuliano. “We join millions of Americans in applauding the important work of the Muscular Dystrophy Association and wish MDA and Mr. Lewis much continued success in their efforts.”

Whew! I'm happy that's over!

He didn't mean it. He's a nice guy. He would never purposely say anything rude about cripp-- I mean, gay people. Everyone carry on! Nothing to see here but a little annual nationally-televised pity party for some dying kids.

"Stay in your house!"

Or, you know, get out there and do your thing. . . .

Image description: A beautiful color photo of a blue-skied day off the coast of Alaska. Picture is taken from the upper deck of a cruise ship in a fjord, the white-capped mountains in the background and the water a vivid shade of aqua. The length of the ship can be seen in the middle-ground, and in the foreground by the railing of this upper deck are a couple in the shade of a bulky apparatus on the deck. One sits in a manual wheelchair, and they both look at the incredible view we see. Flickr photo credit to Todd Sheridan, tud5000.

Image description: A colorful photo from the 2007 Toronto Pride parade of a middle-aged white guy wearing just sneakers, shorts, a baseball cap and carnival beads as he rides a red four-wheeled electric scooter that is decked out in rainbow fabric and rainbow flowers. There's a large beach umbrella above him covered in the rainbow fabric, as is the front and back baskets of his scooter. Everything is trimmed with flowers in colors of the rainbow. The crowd watching the parade lines the street in the background. Flickr photo credit to hypersapiens.

Image description: Two women sit in power wheelchairs at the edge of a lake holding fishing rods. The sun is shining, the water is a vivid blue and there are trees lining the water's edge in the distance. Flickr photo credit to Karva Javi.

Request for technical help: I may have asked this before some time ago, but while I look back for that discussion, can anyone tell me how to use alt tags for photos in Firefox? I've tagged the first two of these three pics, but it only shows up using the Explorer browser. It doesn't show at all in Firefox. Any expertise appreciated.

Yes, the road to hell is paved, but that doesn't mean it's accessible

Good intentions are tricky. With philanthropy, you can get so invested in your own self-righteous helpfulness that you fail to see you aren't respecting the objects of your charity and their needs. On a personal level that could be called narcissism. On a broader level, it is the annual MDA* Telethon in the United States, hosted by comedian Jerry Lewis.

The telethon has historically relied on pity to sell the need for a cure and Lewis is the unabashed champion of portraying disabled people as pathetic victims and unemployable "half-persons" for the cause. He's also completely unapologetic about demeaning disabled people to raise cash. Never mind that pity never helped any disadvantaged group of people gain their own place in the world. Never mind that he's raised billions for that still-elusive cure while disabled folks languish in institutions and remain largely unemployed because of societal barriers maintained by attitudes like his.

Actor Michael J. Fox, who lives with Parkinson's disease and raises funds for research on it, once said "I feared pity because pity is a step away from abuse." Fox has also stated that his life goes on without a cure, and he's been his own spokesperson, forthrightly showing his impairments while engaging the public thoughtfully and open-mindedly on the related politics of stem-cell research. He's been anything but a pitiable victim, even though he is fighting the clock.

Fox knows pity is harmful, and he's not wrong about it's relationship to abuse. For one thing, a life that is considered hopeless without a cure is held rather cheap. But more to the point on good intentions, when told repeatedly over the years by many former MDA poster children that the telethon experience is demeaning and damaging, Lewis shifts directly from pity to verbal abuse. Over and over again.

Don't believe it? Here's one vague apology the MDA issued to try to shield itself from the damage it's spokesperson causes**, even as they keep him on the job. The offensive remark the apology doesn't really mention is when Lewis said: "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

Jerry Lewis has good intentions, you say. The money is for a good cause so it doesn't matter what message brings in the dough. Not every disabled person agrees -- we're a very diverse lot -- but I say the price of pity is far too high. Jerry Lewis has good intentions? I know where he can go with them.

Image descriptions:

The banner at the top of this post is for this Blog Against the Telethon event. It reads, "Until There's a Cure... There's a Telethon: Blog Against the Telethon -- Abolish Charity and Cure Mentality". The text is bold over a black-and-white photographic background of a little blonde girl's face close-up at right and Lewis in a tuxedo pointing a finger toward her downstage at left.

The second image is a color photograph of a person in a manual wheelchair wearing a black t-shirt with bold pink lettering that reads "Piss on Pity" while holding a sign that reads "Dump Jerry". It's taken in 2003 by Tim Wheat of MCIL.

-------------------------------------------------------------

* Muscular Dystrophy Association

** Other damage? In 2000, Jerry Lewis said this at a comedy festival: "A woman doing comedy doesn't offend me, but sets me back a bit. I, as a viewer, have trouble with it. I think of her as a producing machine that brings babies in the world." The Chicago Sun-Times report says that he apologized later to avoid a backlash in fewer telethon donations. Here's the humorous response from several female comedians.

Anti-telethon blogging

Sigh. It's that time of year again. Miss Crip Chick and Kara Sheridan are leading the online protest against this tiresome Weekend of Celebrating Pity through the Jerry Lewis MDA telethon by asking bloggers to write about charity, pity, the medical model of disability, the tyranny of the belief that we all need a cure, and the asshattery of Jerry Lewis. That's for tomorrow, Monday, the United States' Labor Day.






Image description: A yellow banner with black type reads "SEPTEMBER 3RD, 2007, join the campaign against the MDA telethon, write against ableism, charity & medical model of disability, see: http://crip.power.com for more information"

I'd encourage everyone to discuss this. Even if you're unsure of what it's all about or how you feel about it, it's past time everyone was aware that telethons are problematic and contribute to the oppression of disabled people.

Update: Norwegianity readers, welcome! My post for the blogswarm is here. The main page for the blogswarm entries is at Kara's place.

Back

So, it was actually a lousy vacation. I've spent the bulk of my time with ugly digestive complaints or working through the various management issues of having a home health care agency up in my life 24/7. Or both. But anyway, there was good amidst the bureaucratic busy-ness and grumpy misery. Two highlights of my August were a family gathering in the far reaches of western Minnesota and meeting Brownfemipower while she was in St. Paul for the MALCS conference*.

The Gimp Compound inhabitants met with a dozen other Olsons, including the French branch of my cousinry, in the little city of Montevideo. We shared the courtyard of a great little coffeeshop with a local family where a father and a newborn son spent a few precious hours together while the former was briefly home on leave from Iraq. Poignant, that.

Brownfemipower and I met in the union of the University of Minnesota while my parents wandered around sucking up massive doses of alumi nostalgia. Like everyone I've met in person after getting to know online, BFP is just exactly herself, but more. One of the things we talked about was what candidates would be good for a Radical Hot Off of disabled celebrities. It shouldn't be, of course, but the question is deeply problematic: Mainstream celebrities people would be familiar enough to vote on don't celebrate their disability if they have one, disability is stereotypically seen as the antithesis of sexy, and iconic or noteworthy disabled characters in pop culture are usually performed in film by nondisabled celebrities. Our short list consisted entirely of Peter Dinklage. And while that makes the list perfection, I look forward to adding to it.

Anyway, I'm back.

* Mujeres Activas en Letras y Cambio Social (MALCS, Women Active in Letters and Social Change) is an organization of Chicanas/ Latinas and Native American women working in academia and in community settings with a common goal: to work toward the support, education and dissemination of Chicana/Latina and Native American women's issues.