Persephone’s Box writes:

You have a fancy-pants blog with white writing, or sometimes red or blue on a black background. And you write brilliantly, poignantly even, and have many ideas I’d like to discuss.

This is your notification that I can’t read your blog.

My eyes are weak, I’m night blind, and for some reason I really can’t see white on a black background.

Blue already linked to this, but I wanted to echo it, because I can’t read light text on dark backgrounds either.

For other folks who have this same problem, you can instantly change any blog’s colors to black text on white screen by using the “zap colors” bookmarklet in Firefox or IE, or using control-G in Opera. But in my opinion, dark text on a light-colored background is better design than forcing weak-eyed readers like me to install a color zapper.

UPDATE: See also this Firefox plug-in, which disables not only colors but virtually all formatting.

You’ve seen Maddox before… you’ve seen Maddox get poked and prodded.

Read the rest of this entry »

(Based on a FrontPage Magazine review of Michael Bérubé’s book.)

It’s brilliant. If you have a fast connection, go read it. (If you have a slow connection, go read it anyway, but you may want to go make a cup of coffee or something while it downloads).

Looking back at the disability press and its coverage of the FDR Memorial and Chris Reeve’s post-injury politics, there’s clearly a different perspective of these famous disabled men than the mainstream media presents. The topic of stereotypical representation of disability by the media and newly-disabled celebrities themselves rather than news about disability rights ignites activists to raise their voices. Each of the following links (save, perhaps, the last one) are worth reading in their entirety.

FDR

After the FDR Memorial in Washington, D.C., had been unveiled, there was an outcry from disability organizations that the wheelchair Roosevelt used daily all through his presidency was nowhere visible. A 1997 article in Ragged Edge (then called Electric Edge online, since the ‘zine-like print version of Disability Rag was still available) questions “FDR: Rolling in his grave?” :

The controversy among crips is this: Is it great that NOD [National Organization on Disability] is calling Roosevelt a hero for crips, and using him as what one person called a “‘culture icon”? Or is it misplaced praise for a man who really went to great efforts to pass as non-disabled?

“It is important to Americans with disabilities — and important as a symbol of how American society perceives its disabled people –that the Memorial depict the man as he was: tall, strong, heroic and disabled. Don’t let them steal our hero!” Hugh Gallagher, author of FDR’s Splendid Deception, has said. He has been liberally quoted by supporters of the NOD campaign.

[Blind reporter Kathi] Wolfe worries that the effort to turn Roosevelt into “a crip icon just because he was a crip” contradicts history. “He wasn’t a disability hero,” she insists. He wasn’t “a crip advocate like Helen Keller, who worked to better conditions for blind and deaf-blind people and veterans who had disabilities — as well as being a feminist and against racism.”

Here’s the Congressional hoopla that led to adding a statue to the Memorial depicting Roosevelt in his wheelchair. It was a rare triumph that the voices of disabled people were heard and effected change, though likely the biggest reason for their success was Roosevelt’s political history of serving oppressed minorities. That aspect of his personal history tipped the scale to support people with disabilities.

Chris Reeve

Along with instantly becoming the most famous, most quoted disabled person on the planet, Chris Reeve was always a lightning rod for political controversy and frustration among disability activists.

In letters to the editor of Electric Edge, readers vent about Reeve:

Due to his high profile, it’s no surprise that much ink is devoted to Christopher Reeve. Our world has collided with that of an A-list celebrity in a way that we could never have anticipated, so it is inevitable that we react to him in the Rag, Mouth, Accent, and all of our other usual forums.

Readers themselves may have witnessed or experienced firsthand the myriad thoughts and emotions in the two or three years immediately following such a massively imposed change as is caused by a spinal cord injury. In the clinical model, there are textbook pages written about a pattern of denial, anger, and depression. Christopher Reeve is, so far, the most powerful, influential person to go through this experience. All his talk of The Cure is nothing new; convert gimps have been singing this tune for years. His use of this crap is now drawing the attention it craves because he’s the one saying it. We’re all horrified because he can undermine the life work of hundreds of advocates in just one speech.

Writing about her 1996 experiences as a South Carolina delegate at the DNC, Harriet McBryde Johnson was on the floor when Reeve addressed the Convention:

They’ve been building up to tonight’s major prime-time speaker, and now they’re introducing him: Christopher Reeve. When the introduction ends, the hall lights are dimmed. Onto the stage he rolls and then sits, gleaming under a dramatic spotlight. The crowd is on its feet, wild with welcome, with excitement, with awe. Yes. They’re awed by the mere sight of this man sitting, smiling, looking around. He hasn’t said a word and they’re going crazy. It’s real. There’s no prompting from the DNC staffers.

I’m in the middle of 60,000 drop-jawed souls, witness to a late 20th-century Pentecost. Physically, Reeve is way above the 60,000, isolated by that spotlight. Symbolically, he’s the object of devotion, not a member of the fellowship. As Reeve and the crowd are having their communion, I feel completely out of it.

He’s speaking now. I try to listen, but things have become surreal. I look up at Reeve.

I look up and I see … a ventriloquist’s dummy.

How could I think such a thing? I’m horrified. If these worshippers knew my thoughts, they’d tear me up and throw me to the dogs.

I tell myself Reeve’s playing out the very peculiar drama of his life the best way he knows how. He’s being used, but what can he do? This is a new role for him. He has no script.

But, there he is, Charlie McCarthy.

Where is this image coming from? No quad I’ve ever known has impressed me this way. I’m pretty quad-like myself. Maybe it’s the staging that objectifies him. Or maybe it’s the contrast between his persona and the physical vigor we expect on the podium of a national political convention.

No. It’s the face. That smile running from ear to ear. The face is commonly considered animated, but I see something … wooden.

I’m warmed by the sudden sunburst of TV lights; a camera crew is setting up. They want the crip reaction to Reeve’s speech.

“Beth, can you block me?”

She stands between me and the camera. The crew establishes a new sightline and she leans right into it. They call someone on their cell phones.

Reeve’s measured syllables are perfectly timed with his mechanical puffs of air. The pauses make what he’s saying seem important. Even in the dim lights I can see the faces in the crowd, transfixed by the sight of him, fascinated by the sound of him. The gleaming presence. The ventilator whoosh. The body propped up in dress-up clothes.

The camera crew realizes that Beth’s not going away. They load up their gear and head elsewhere.

Moments later, there’s a woman in a wheelchair on the giant TV screen in the rafters. She’s scowling. Quick cut to a nondisabled white woman, tears streaming across a smiling face, backlit to highlight her moment of inspiration. The lights pick out a variety of delegates. White, black, old, young, male, female. Everything but crips.

It’s melodrama. The kind of Telethon melodrama I tried to ignore in my childhood and youth, tried to ignore until finally I got angry enough to put up a picket line. How could they bring the Telethon here, to a national political convention? This is my party. How could they do it?

The speech ends and the lights come on. As emotion runs through this vast arena, I’m left cold. I can’t possibly feel what they feel. Now they’ll want to see me the way they see Reeve, a disability object, presumably tragic but brave, someone to make them grateful they’re not like us.

I tell myself I’m overreacting, but I’m almost shaking when I join the line at the elevators. A misty-eyed stranger kneels down beside me and clutches the hand I’m trying to drive my chair with.

“Wasn’t that just wonderful?“

“No,” I blurt out, “it wasn’t at all wonderful. I thought it was pretty bad.”

“Well, I thought it was wonderful.” She springs up and pivots away with an angry shoe-clop on the hard floor. How dare I refuse to be inspired?

On the bus ride back, everyone rhapsodizes about how inspired they are. Gone is the usual friendly chitchat. I stare at the black floor mat and withdraw from the group that has set me apart.

We get to our rooms, way past ready to collapse into our beds, but there’s a blinking light on our phone. A message from Mike Ervin: “Hi. Some people from Chicago are having a press conference tomorrow to deal with the Christopher Reeve, er, problem … “

Beth writes down the details. We’ll be there.

Continuing in Part II, Johnson describes the disability rights media response:

Christopher Reeve’s speech has left us with a problem. By putting him up on the podium the way they did last night, the DNC has fed–and fed upon–the harmful disability stereotypes I’m here, in part, to fight. When I arrive for the disability caucus and find the gang from Chicago outside the door passing out flyers, I’m overjoyed. The flyer, by Mike Ervin and Anna Stonum, deals pointedly with Reeve.

Local TV news shows up. They shoot video of the group and then zoom in on my red delegate badge, proof of my authenticity as a genuine Democrat from the Deep South. Up here, I guess, I’m exotic. They set up lights. Mike and I agree to talk.

There’s a lot of noise and I can barely hear what Mike’s saying. Is he really calling Reeve a whiner? No, not exactly, but close. I think Mike might be going a bit too far, but a wave of gratitude washes over me. He’s a champion who’s fighting not Reeve but the people who put him on that platform.

Another 1997 Electric Edge article asks about Chris Reeve “What’s it gonna take?” Here’s writer Pat Williams:

Some gimps I know say, “give Chris Reeve a break! He’s new to gimpdom. He doesn’t realize there’s more than Cure out there.” These gimps want to believe that after Reeve’s been a gimp for a few years, he’ll get on to disability rights; he’ll speak out on the importance of access, attendant services, all that.

But I don’t buy that. I think Reeve knows exactly what he’s doing. He knows you can’t talk about cure on the one hand and access on the other; he knows people see them as contradictory. He was drawn to the American Paralysis Association, he said, because “they are dedicated solely to finding a cure for paralysis, nothing less. I liked that idea,” Reeve went on. “They’re not into lower sidewalks and better wheelchairs.”

“Suppose Chris Reeve were Barney Frank”:

Suppose he wrote an autobiography about seeking a cure for his homosexuality? Suppose he started the Barney Frank foundation to cure homosexuals? Suppose he held a television special to raise money to find a cure for homosexuality?

Suppose Barbara Walters interviewed him on 20/20 on his work to find a cure for homosexuality?

Imagine it.

A 2000 Ragged Edge response to Reeve’s Superbowl ad where a digitally manipulated Reeve got out of his wheelchair and walked:

With an unemployment rate of over 70%, the vast majority of people with disabilities could not begin to be considered consumers of this product. But the ad was not created with the disability market in mind; its target was people with money. It unabashedly pulled at heartstrings with an in-your-face, no-holds-barred “disability is bad” message. In the tradition of Jerry Lewis, this ad meant to bring tears to the eyes of football fans during their favorite game, courtesy of the incredibly courageous former Superman.

The ad may have done more damage than Jerry himself: unlike the telethon, this “disability is bad” message aired during one of the year’s most watched TV events. Nuveen paid $4 million for that minute of airtime.

At the same link, several disability activists speak out. Paul Longmore:

“The opportunities in this new world for people with disabilities have not been created by technology alone. They are the result of several generations of intensifying disability rights activism that has won passage of laws protecting us from discrimination and guaranteeing us access. . . . We need to ask why society keeps giving Reeve platforms to propagate his views but excludes the disability rights perspective.”

Tom Deniston of Accessible Design Associates:

“If I had pulled a Christopher Reeve 30 years ago, none of at least 1,000 buildings would be accessible today.”

Charles Krauthammer:

“In Reeve’s view, reality is a psychological crutch. His propaganda to that effect undermines those — particularly the young and newly injured — who are struggling to face reality, master it and make a life for themselves from their wheelchairs.”

New Mobility editor Barry Corbet writes:

Alas, poor Christopher Reeve. He can do no right.

In his quest for cure, he’s been roundly criticized by a large and vocal sector of disability activists for obscuring our core message of rights, equal opportunity and dignity.

Alas, poor Christopher Reeve. He can do no wrong.

In his quest for cure, he’s raised millions of dollars for research, elevated public awareness for all people with disabilities and brought hope where once there was none. He’s become Saint Christopher and there’s not much his detractors can do about it.

Ted Gilmer’s 2002 New Mobility interview with Reeve presents a detailed picture of the man and his advocacy while also subtly showing how alienated he is from the average quadriplegic’s life.

In 2003, Mary Johnson’s book Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights explains how Reeve’s efforts dangerously undermine disability rights.

In a less critical 2004 article about his death Ragged Edge editor Mary Johnson notes:

We are awaking today to a week in which we will read and hear all sorts of encomiums to Christopher Reeve the actor, the brave man who kept on in the face of tragedy, the man who became an icon for stem cell research.

What we will not hear are tributes to the man who changed America’s understanding of disability discrimination, who put a face on the problems this country causes wheelchair users by the persistent denials of access and accommodation.

Had he lived, Chris Reeve might one day still have come to symbolize to the American public the fight millions of us must wage in order to get out of institutions, into homes of our own, into jobs, into the public environment. Many of us wanted to believe he would someday embrace the rights issue much as he had embraced, as a nondisabled man, many progressive causes.

The Need to Critique

I’ve been getting a lot of heat for daring to criticize Andrea Dworkin’s public writing about disability. Thinking critically about who the widely disparate disabled are and how we’re portrayed isn’t something I decided to play at just to “slam Dworkin.” It’s a long-term project that includes looking at literature and film too. I didn’t have a blog during the FDR Memorial issue or until the very end of Chris Reeve’s life, but I did write a letter to the editor of my college paper about the Memorial:

This letter is in response to the Tuesday State Press editorial stating that FDR should be remembered for his deeds, not his disability. While this newspaper has certainly made more blatant errors recently with regard to group stereotypes, the editorial speaks to the lack of support for diverse groups and their experiences.

It was widely known during Roosevelt’s time in office that he used a wheelchair, and buildings all over Washington were equipped with ramps so he could come and go. These ramps were all removed when he died, attesting to the fact that because his disability was hidden, the access needs of other disabled Americans remained unacknowledged for a couple more decades. No, Roosevelt did not want himself portrayed in a wheelchair, but neither did he want any kind of memorial in his honor. We already have the memorial; now the challenge is to depict Roosevelt honestly and in a way meaningful for future generations.

The history and experiences of other stereotyped and marginalized groups have not emerged without struggle. Recognition of both contributions to society and discrimination from society have been hard won for African Americans, Native Americans, women, gays and lesbians, etc. While the editorial board acknowledged that people with disabilities are often pitied and patronized, they fail to truly examine Roosevelt as a president with a disability. He chose to hide his disability because of discriminatory attitudes. As President Clinton has said: “He knew it was necessary at the time because he knew he had the capacity to be president, and he didn’t want some artificial perception to keep him from being president.”

In addition to Clinton, former Presidents Bush, Carter, and Ford — as well as 16 of Roosevelt’s grandchildren — support a statue depicting him in a wheelchair. History does not change, but what we see as important about our past continues to evolve. Who our heroes and role models are for the future has thankfully expanded. As the editorial states, “FDR was an inspiration to many,” but perhaps not “regardless of his physical state.” Perhaps his experiences with polio are part of why he was so great, and why he could say “We have nothing to fear but fear itself.”

Incidentally, the new statue would not cost taxpayers a dime. The National Organization on Disability has pledged to raised the necessary funds.

And Reeve is mentioned anecdotally throughout this blog.

There aren’t many famous disabled people because disabled people don’t get enough media coverage to be recognized as the political activists and political writers they are. It ends up being famous people who become impaired and thrust into a brighter spotlight that society views as our spokespeople — mostly spokesmen. Without criticism of their unwitting role in our continued oppression, their stereotypical messages go unchallenged. It’s not enough to critique the media when the public turns to these celebrities, the roles of the celebrities must be examined too.

Crossposted on The Gimp Parade
Check there for more comments

Maia at Capitalism Bad, Tree Pretty writes:

In particular, several fast-food chains were in the news a couple of weeks ago. This is how it was reported in the The Dominion Post:

Representatives of the multinationals fronted up to Parliament’s health select committee yesterday and insisted their products did not cause obesity.

Because the only way to evaluate our food is whether or not it causes obesity. […] As soon as the discourse becomes about obesity, the makers of food don’t have to justify what’s in their food, and can instead claim that things aren’t there.

Go read the whole thing.

• “Pimp my gimp.” Recent Doonesbury strips showing B.D.’s efforts to decorate his prosthetic leg are the latest in good crip giggles.

• Sage of Persephone’s Box has an announcement about blog color choices and the her ability to read what is offered. While we’re on the topic, I can’t remember who posted on it recently, but the CAPTCHA function for spam-proofing comments at many sites is troublesome for many of the sight-impaired. I’ve turned mine off and so far the spam on my little site is only about 2 per day.

• Dan Filler at Concurring Opinions has some legal thoughts on “Mental Illness and the Death Penalty,” followed by interesting comments.

• The Independent has an article on toxic garbage from Western nations poisoning West Africa:

All down the West Africa coast, ships registered in America and Europe unload containers filled with old computers, slops, and used medical equipment. Scrap merchants, corrupt politicians and underpaid civil servants take charge of this rubbish and, for a few dollars, will dump them off coastlines and on landfill sites.

• Another article in the same edition tells of the daily struggles of African women and how sexism and ableism work together to make life hard:

An HIV-positive woman is nearly 10 times as likely to experience violence at the hands of her partner as a woman who does not have the disease. Domestic violence causes more deaths and disability among women aged 15 to 44 worldwide than cancer, malaria, traffic accidents and war. In at least 20 African countries, more than half the women have also suffered female genital mutilation.

• The founder of a Swiss clinic offering assisted suicide for the terminally ill wants to widen the scope of elligible people to those who are depressed.

He claimed that such a move would help to cut the suicide rate to about 20 per cent to 25 per cent of its current level. “You could avoid the huge majority and reduce costs to the health services,” he said.

Apparently, if someone commits your suicide for you, it isn’t legally suicide. (True, btw. This also means family can cash in on insurance policytaken out on the dead person.)

• Lingual Tremors presents the impressive 23rd Carnival of Feminists on the theme of women and health care.

• A visually-impaired Atlantic City man sues the city and the “senior-transportation service” (I’m not sure why they call it that and not just paratransit like everyone else) because the driver arriving to pick him up in July, 2004, refused to let his guide dog on the bus. She was afraid of dogs.

• A respiratory disease called “popcorn lung” plagues workers in American factories where a chemical in artificial butter flavor is used on microwave popcorn.

• Some interesting Finnish blogs I can’t find a good page translator for. Anyone?

• Lene Andersen at The Seated View thinks about self-image versus objectivity and the words — like “deformity” — that can cut.

• Time magazine’s feature story, “Who pays for special ed?” begs for some disability blogging by those with more expertise than me on the squeeze between parents of disabled children and school districts feeling a desperate budget crunch.

• Larry Scott writes about the Republican plan for “Buying-out Disabled Veterans” with a lump-sum disability compensation and all the questions that brings up about eligibility for medical care through the VA.

• “The Meaning of Deafness” discusses education for deaf students and the conflicting philosophies parents of young children must chose between.

• Rochelle Gregory at Points of Praxis looks at the documentary Autism Everyday,the purpose the film is meant to serve and the disability rights critique of it.

Crossposted at The Gimp Parade

[I was following links to different “privilege knapsacks”¹ (via Shrub.com’s sidebar, and also via this post at New Game Plus), but the link to the “non-trans privilege checklist” had died. I found the text in the google cache, but since that might not persist, I decided to reprint it on “Alas” to keep it available.

I also considered renaming this “The Cisgendered Privilege Knapsack,” because I like the word “cisgendered” and would like to propagate it, but the original author (whoever it is) called it the non-trans privilege checklist, and who am I to change that?

Author unknown. If you happen to know who wrote this, please let me know in comments. Like all the “privilege checklists,” this owes a debt to Peggy McIntosh’s White Privilege: Unpacking the Invisible Knapsack. –Amp]

1) Strangers don’t assume they can ask me what my genitals look like and how I have sex.

2) My validity as a man/woman/human is not based upon how much surgery I’ve had or how well I “pass” as a non-Trans person.

3) When initiating sex with someone, I do not have to worry that they won’t be able to deal with my parts or that having sex with me will cause my partner to question his or her own sexual orientation.

4) I am not excluded from events which are either explicitely or de facto* men-born-men or women-born-women only. (*basically anything involving nudity)

5) My politics are not questioned based on the choices I make with regard to my body.

6) I don’t have to hear “so have you had THE surgery?” or “oh, so you’re REALLY a [incorrect sex or gender]?” each time I come out to someone.

7) I am not expected to constantly defend my medical decisions.

8) Strangers do not ask me what my “real name” [birth name] is and then assume that they have a right to call me by that name.

9) People do not disrespect me by using incorrect pronouns even after they’ve been corrected.

10) I do not have to worry that someone wants to be my friend or have sex with me in order to prove his or her “hipness” or good politics.

11) I do not have to worry about whether I will be able to find a bathroom to use or whether I will be safe changing in a locker room.

12) When engaging in political action, I do not have to worry about the *gendered* repurcussions of being arrested. (i.e. what will happen to me if the cops find out that my genitals do not match my gendered appearance? Will I end up in a cell with people of my own gender?)

13) I do not have to defend my right to be a part of “Queer” and gays and lesbians will not try to exclude me from OUR movement in order to gain political legitimacy for themselves.

14) My experience of gender (or gendered spaces) is not viewed as “baggage” by others of the gender in which I live.

15) I do not have to choose between either invisibility (”passing”) or being consistently “othered” and/or tokenized based on my gender.

16) I am not told that my sexual orientation and gender identity are mutually exclusive.

17) When I go to the gym or a public pool, I can use the showers.

18) If I end up in the emergency room, I do not have to worry that my gender will keep me from receiving appropriate treatment nor will all of my medical issues be seen as a product of my gender. (”Your nose is running and your throat hurts? Must be due to the hormones!”)

19) My health insurance provider (or public health system) does not specifically exclude me from receiving benefits or treatments available to others because of my gender.

20) When I express my internal identities in my daily life, I am not considered “mentally ill” by the medical establishment.

21) I am not required to undergo extensive psychological evaluation in order to receive basic medical care.

22) The medical establishment does not serve as a “gatekeeper” which disallows self-determination of what happens to my body.

23) People do not use me as a scapegoat for their own unresolved gender issues.

1. Which are universally referred to as “privilege checklists,” and that’s pretty much my fault, I fear. But McIntosh, who started it all, called it “unpacking the privilege knapsack.” (back)

A few days ago I read a story from Rueters about a couple from Maine, who kidnapped their 19 year old daughter. They forced her into a car, and tried taking her to New York so they could force her to have an abortion. The daughter escaped and called police while she hid in a store in New Hampshire. The parents have been arrested and held on $100,000 bail. After reading the first couple paragraphs of the story, my immediate reaction was, “I wonder if the potential father is black.” However, the initial article reveals very little about the motive. After my initial read, the only motive I could glean was that the parents were mad that the boyfriend was in jail. But, this story didn’t add up to me. So yesterday, one of my students mentioned the story and said that–the kidnapped woman’s boyfriend is a black man, and the daughter told police that racism was a motive in the kidnapping.

Based on my research on interracial relationships, this story actually fits fairly well into the narratives I have seen in many white families where relatives strongly object to interracial relationships. The only thing that surprises me about the story is that the parents attempted to kidnap this woman; the cases I know of personally generally involve less direct coercion. I know of 2 cases (one in my research and one in another sociological study) where parents of a white person in an interracial relationship suggested, encouraged, and promoted abortion to prevent the birth of a biracial child (I am hesitantly using the term biracial because most of the white relatives would say the child is black.). I also know of other cases where people encouraged white mother’s to place a child for adoption because the child’s father was black, and I know of many situations where white families offered bribes and/or withdrew emotional and/or financial support as a way to discourage an interracial relationship or a pregnancy that resulted from such a relationship. In these cases, white relatives feel they are protecting the family’s reputation, and/or they feel that the relative in the interracial relationship is too naive (especially women) to know what she/he is getting into. White relatives who feel this way believe that birth of a biracial child is a permanent marker of an interracial relationship that will hurt their relative’s social standing (white privilege), and to some extent, I’m sure they are right about this. The irony of this is that many white relatives of interracial couples would be the first to say that race doesn’t matter or that whites do not have unearned privileges, but suddenly when it hits close to home, they change their tune.

The media attention given to this kidnapping has been varied, ranging from the first story, which was completely raceless, to the subsequent story where race is revealed as a motive. This story also has implications for abortion politics, and thus, it has received attention from those for and against abortion rights. I thought a nice sampling of headlines for this story would reveal a lot about our racial politics, our abortion politics, and where location where race and abortion politics intersect (or don’t intersect in public life).

• We’ll start with this headline from BET.com–”Parents Were Upset Baby’s Father Was Black, Police Say.” Note how this headline focuses on the father’s race as the point of contention for the parents. I also found it interesting that the author uses the term “unborn child.” I know this phrase is passe among many pro-choice advocates, but I can clearly understand why an African American writer would choose to emphasize personhood, given the long history African peoples being treated as less than human. I tried to walk the tightrope between my pro-choice and pro-black views by using this phrase, “to prevent the birth of a biracial child.”
• This headline from Seascoastonline.com comes from the Portsmouth, New Hampshire Herald–”A call for calm in kidnapping probe.” The article is from AP, but even if an article comes from AP, local papers make up their own headlines. What is so ridiculous about this headline is that the article has nothing whatsoever to do with “a call for calm.” I don’t know if the person who wrote this headline was worried that the 10 Black people who live in NH were going to go out and protest this, but the headline certainly does not match the story (Ok, I know the number of Black folks in NH is more than 10, but please allow me a sarcastic moment.). The actual article makes NO mention of the racial aspects of the case, which I don’t necessarily object to. However, I frequently see articles “calling for calm” any time an event is racially charged. Now here is a better headline for the same AP release–”Prosecutors mum on kidnapping charge.” Yes, the headline avoids the race issue, but at least it matches the subject. I would expect a prosecutor not to divulge too much information in a high profile case, to try to preserve the jury pool. But how can the same article have such dramatically different headlines.
• Next comes this headline from Truth Dig.com, a progressive website that seems to cater to a white audience–”Taking the ‘Choice’ Out of ProChoice.” The article makes several good points about reframing pro-choice politics, and remains nearly silent on the racism issue until we get to this lovely quote:

  “The back story, as assembled by police and reporters, has all the elements of soap opera even in its bare bones. Katelyn, a high school honors student who enrolled in Boston College, had been sent to George Washington University in an attempt by her parents to distance her from her boyfriend. The debacle followed her parents’ discovery that she was back in Maine and pregnant. Katelyn has told authorities that her parents were outraged because her boyfriend is black. Their attitude may have been more shaped by the fact that he is in jail, again. But there is nothing that justifies duct tape or the destination.”

  Well, Ellen Goodman needs to read the other reports because this young woman has explicitly stated to police that her parents were upset about the race of her boyfriend, not his criminal record. She seems to take it upon herself to down play the race issue and provide a pseudo-justification for the parents (He’s a jailbird.). What’s sad about this headline, is that it is the same problem we have over and over again in the white progressive/liberal/feminist blogosphere. Some white progressive/liberal/feminist takes it upon her/himself to very carefully outline a progressive/liberal/feminist perspective on a hot button issue (in this case abortion), while simultaneously marginalizing racism and the perspectives of people of color. She makes a good point that this case in no way undermines pro-choice politics, and the family would have an extremely difficult time finding a doctor to perform an abortion on an unwilling woman. Unfortunately, Goodman doesn’t realize (or care about??) the clear racial implications of the case.

• Now here’s another pathetic take on this story. This time we have the anti-abortion website Lifesite with–”New Website Details Thousands of Violent Crimes by Abortion Supporters.” The authors are promoting a new site that basically argues that pro-choice advocates are a bunch of criminals, and the site attempts to use this case to demonstrate the “violent nature of abortion.” While the article briefly mentions race; the author also decides that abortion is violent and the parents were violent not because of their racism but because in the words of one anti-abortion activist, “Abortion is one of the most violent acts known in the history of mankind and its acceptance into our otherwise civil society has served to breed more and more violence to the point where we are now witnessing parents who physically subdue and kidnap their own children in an effort to force them to abort their unborn grandchildren.” Does this guy really think the parents would have wanted this woman to have an abortion if the guy was white? Isn’t racism the underlying cause of this violent act. These crazy parents don’t epitomize pro-choice advocates. First, how can anybody even remotely think that kidnapping somebody and trying to force that same person to have an abortion is in anyways consistent with pro-choice politics. Clearly these parents were anti-choice because they didn’t want to let their daughter have any say in this matter.

A case like this can be framed and used to promote multiple viewpoints, as the headlines reveal. Unfortunately, the vast majority of media outlets, pushed the racist elements of this story to the back of the agenda. In particular, people seem to be attracted to the abortion angle of the story, not the racist angle. If you miss the racist, angle of this story than you miss a huge piece of the puzzle.

I don’t know what the feminist reaction to this post will be, but it won’t get out of my head, so I had to write it out. I’m interested to hear.

I’m not a big personal fan of Andrea Dworkin’s writing, but I appreciate her contributions to feminism and her work as a radical thinker. When she died in April, 2005, I read a couple dozen obituaries and blog posts that celebrated her life and learned more about who she was as a woman and activist. The Guardian released “Through the Pain Barrier,” reportedly her last piece of writing, completed just a month before her death. I was excited to hear that the topic was her experience with disability, and I couldn’t wait to see what the woman whose writing and speaking style had been described as “apocalyptic” might say about disability and civil rights.

I was disappointed.

Her account of her osteoarthritis, double-knee replacement and the years of troubled rehabilitation and pain afterward is deeply personal, as is typical of many Dworkin essays. She begins by blaming her osteoarthritis on a 1999 rape in a Paris hotel.

Doctors tell me that there is no medical truth to my notion that the rape caused this sickness or what happened after it. I believe I am right: it was the rape. They don’t know because they have never looked.

I do believe horrific experiences and emotional pain can contribute significantly to a person’s health, but I wince at the general notion that a common condition needs to be attributed to personal crises. Impairments happen. God doesn’t cause them and they exist without need for any form of moral explanation, whether it blames the person or makes them a victim of someone else’s moral flaws. Needless to say, I’m uncomfortable with the way Dworkin begins.

Dworkin’s treatment for her worsening knees follows what I understand to be a typical pattern of drugs, cortisone shots and finally knee replacement surgery. I don’t envy her or the senior citizens I know who’ve had this treatment or are in the midst of it. Despite various setbacks, the people I know personally who have been through this recovered their mobility after the surgeries, though they did experience the basics of what Dworkin describes rather dramatically here:

I still don’t know what he did to me but I came to the conclusion that the operation was barbaric, involving as it did the sawing out of the arthritis, which meant sawing through bones. It was like being kneecapped, twice, or having one’s knees and bones hammered and broken into bits. After the operation I was in a nightmare of narcotics and untouchable pain. There were morphine shots. I asked for them and got them often. Even morphine shots in the upper arm hurt.

I had a hallucination but it is still real as rain to me. I was in Virginia Woolf’s house and I was happy. But “they” wanted me to go down the stairs. I can’t, I begged, I can’t. My hospital bed was at the top of the stairs and I was afraid that they were going to push me down. I saw the steep decline of the steps. I couldn’t get over my visceral fear of falling or being pushed or being turned over from the bed down the flight of steps. I kept experiencing my bed as being on the edge of a precipice.

I agree that the operation seems “barbaric” and thinking about it gives me the willies, but I dislike how Dworkin makes these personal experiences of a common procedure out to be extraordinary. All serious surgeries cause pain, and heavy-duty painkillers do cause hallucinations. I violently beat up a sock puppet in one fentanyl-induced hallucination last November for reasons I can’t explain. After back surgery at age 16, I imagined my hospital bed was in a basement hallway and I’d been abandoned there. It took repeated reassurances from nurses and my hospital roommate to convince me I was safe and stop me from hollering for help. My grandmother saw spiders all over the walls once. These hallucinations are normal, though as individual as dreams, and are not proof of anyone’s suffering or victimization.

I relate well to Dworkin’s descriptions of physical and occupational rehabilitation, including the weird and often purposeless tasks required in OT:

Rehabilitation also includes so-called occupational therapy: throw a ball around in a circle; put round pegs in round holes; stand up, arms on a table, and read a page of a magazine; water a plant; play checkers or cards; and the pièce de résistance, cook and serve a simple meal.

And the sexism she notes of caregiver expectations upon returning home I saw, as well:

On discharge, social services are provided. My male partner is not expected to be a care-giver.

I have no experience of the “pain management centres” she describes, but they do sound tedious. I’m simply stunned by the potent mix of painkillers she says they kept her on.

Curly eventually puts me on Percocet, fentanyl patches and methadone. I am on these drugs for nearly two years. I become slightly indifferent to the awful pain. My speech slurs and my memory is impaired.

Fentanyl is dangerous for any length of time, I was told. The patches Dworkin used prompted an FDA advisory in 2005. I was weaned from fentanyl injections after a few weeks in ICU and I missed it terribly at first. You may recall fentanyl was the painkiller mixed with heroin or cocaine that was responsible for dozens of deaths this past spring.

Dworkin’s three-story New York residence disturbs me greatly. Not that she didn’t move somewhere more accessible — I know how difficult that can be. But did she really spend years crawling up and down three floors of steps between kitchen, bathroom and shower? I find that intolerable, and either unbelievable or lacking in creativity or… something. Adapt, Andrea. Adapt! Bathe in the kitchen or pee in the shower or something. Spare yourself some pain. If there are any triumphs of adaptation Dworkin does discover for herself, she never mentions them.

I remain ambivalent about the descriptions of her leg braces and the humor and pathos there. It doesn’t seem as though she accepts her body for what it is, and I had hoped for more from the woman who made no accommodations to expectations of feminine beauty or style. Depression rules her state of mind:

I can’t bear it or accept it. I reject the extent of my disability. I find myself in a silent rage that stretches over weeks. I am utterly exhausted by my incapacity. I am worn out from walking. I am sick of physical therapy.

She lacks perspective on what a “little humiliation” is too:

I keynote a conference on the Holocaust. The organiser picks me up. She is driving a truck. I try to climb up into it. She physically pushes me under my ass without permission, all the while talking to me in baby talk, put your tooshie there, keep your cute little fanny there. I turn to her and say, I am disabled, not stupid. A friend throws a party for me in Washington. I ask how many steps there are to the apartment. He doesn’t know. I assume he will get back to me. John and I go to the party. There are three flights of steps. I can’t get to the party being given for me. We could have given it in another venue, the friend says the next day. It cuts. I go to a bar and need to use the rest room. The men’s is filthy, the bartender says; the women’s is two flights up. I use the dirty one. I go to a new movie theatre that has elevators and disability bathrooms but the polished stone of the floor is so slick that my crutches cannot safely navigate it. I am walking with a friend who suddenly looks at my crutches and says, you don’t want to be this way the rest of your life, do you? Her repulsion is barely masked. I feel unutterably alone.

While some of these encounters are minor, the party in her honor that she could not even attend seems a big frustration and failure of her friends to me. Three flights of steps overlooked when the guest of honor used leg braces and crutches — it seems unconscionable.

The last several paragraphs hold promise as she turns to public access and the ADA, though most of my disappointment lies here. She acknowledges that:

Only a determined policy of public access can help to mitigate the loneliness. One needs to be able to enter buildings; have a cup of coffee; go to a restaurant, the theatre, cinema or a concert; attend school; go to lectures or readings; use public transport, bathrooms, hotel showers; go to museums and sporting events and political rallies. One needs equal opportunity in employment. One needs to be integrated into the world, not separated from it; yet one has special needs, ones that able-bodied people rarely consider. The low consciousness of the able-bodied increases alienation.

She praises the accessibility the law has provided for her in public places, and gives credit for this to juries awarding high punitive damages to plaintiffs, which is not untrue but significantly misrepresents the successes and history of the ADA in the courts. There is no indication at all that more needs to be done or that the law is perpetually under fire in the media and from Republicans in Congress.

So that wraps up my ungenerous critique. Admittedly, I’m generally uncomfortable with Dworkin’s emotive writing style. And I’m uncomfortable with any telling of the crip experience that has even a whiff of the “why me?” stereotype of disability as drama. I’ve seen too many disease-of-the-week, inspired-by-a-true-story, whine-until-some-nondisabled-person-snaps-you-out-of-it sagas on TV and film to be comfortable with any reinforcement of that tale.

And the last time anyone really famous was given big media attention for their disability, it was Chris Reeve on Barbara Walters talking about how he had wished himself dead and how his purpose in life was now to find a cure for paralysis. When he died a decade after his paralyzing injury it was widely reported that the cause was sepsis from bedsores and that such problems were an understandable killer of any quad. In truth, Reeve died from a violent reaction to a medication, and while he had been dogged by infections he was sitting in his wheelchair at a hockey game earlier on the day of his death, something no person with a dangerous sore on his butt would ever do.

It took Reeve the better part of a decade as a disabled person to start speaking about the basic civil rights we all deserve, though he spoke publically about other issues all the time. My expectation that Dworkin would stir the pot for disability rights was unrealistic and bound to disappoint. Disability isn’t an identity anyone embraces overnight, and some obviously impaired people never accept it.

And beyond that, becoming politicized about the social treatment of disabled people also doesn’t come easily. For most, there’s no discussion around the dinner table about the day’s humiliations with others who’ve experienced the same. The disability rights movement was largely started in the U.S. by a generation of people who caught the polio virus and were institutionalized together and perceived the injustice of their collective treatment because of this. Most crips don’t experience this kind of community unless they seek it out. Not Reeve, not Dworkin, not me.

Dworkin had nothing remotely “apocalyptic” to say about disability. If she’d lived another 20 years that may or may not have changed. Her last piece of writing is not at all political despite its mention of the ADA — because her mention of the ADA was completely uncritical. It’s just a personal piece, quintessentially Dworkin, really. And the sad truth is that any newly disabled person (or newly accepting of the identity) is not ever speaking politically about disability rights unless they say they are, celebrity or not.

Crossposted at The Gimp Parade

Go Check it out!!!

In my last post on transracial adoption (TRA), I discussed how popular media outlets cover transracial adoption. I argued that the current framing sets up several false dichotomies that further racism and white supremacy. In the process, I ruffled a few feathers. I noticed several of the commenters (especially on Alas) were offended that I challenged the way that media outlets cover TRA. In this post, I suppose I’ll ruffle a few more feathers because this time I will speak more directly about transracial and interracial families (through adoption, marriage, cohabitation, procreate, etc.), not so much the media framing of transracial/interracial families but rather what the increase in transracial/interracial families does and does not tell us about social change.

I would like to start by clarifying my personal position on TRA and interracial families more broadly. I do not oppose transracial (TR) or interracial (IR) families/relationships. I think from a sociological perspective TR and IR families are neither good nor bad. I suppose some people may be surprised that I do not label TR/IR families as “good” given the general posts I have put up on interracial relationships. Ideally, what I would like to see is a point where TR/IR families are viewed as unremarkable and normal—a point that we are a long way away from. The current liberal discourse sets up TR/IR families as “celebrations of diversity” or the “promise of the future,” but this is problematic for several reasons.

First, off both TR and IR families can be and often are both agents of change and promoters of the status quo. Our families can reiterate racism or challenge it. In fact, there are whole societies in Latin American where interracial families are common place, but racism is still firmly entrenched. A quick glance of the elite’s in Latin America reveal that those who are whiter and lighter hold the highest positions and the most power. I think the increasing number of TR/IR families here in the US does signify a change in our racial ideology, but it does not signify the coming end of racism. In my own research on heterosexual IR couples, I found many people who were in interracial relationships and were more than willing to reiterate racist sentiments—i.e. black men are good in bed, black women are bitchy, biracial children are messed up.

My second concern is consistent with the views expressed over at Mixed Media Watch. Jen and Carmen have argued on more than one occasion that viewing multiracial people as the hope of an anti-racist future puts a great deal of added pressure on mixed race people. I think this is true more broadly for TR/IR families. While we may feel an extra burden to fight racism because our families are marginalized, the burden to fight racism really needs to be spread throughout the society as a whole (not just people of color and TR/IR families). Seriously, who made TR/IR families racial experts? Many of us are no more educated about race than the average American; we may have valuable experiences to share and some of us certain do grapple more with the politics of racism, but this should not be assumed.

My third concern is that an increasing number of TR/IR families see their experiences as somehow unrelated to those of people of color more broadly. The people who believe this way believe that they are facing discrimination primarily because their families are TR/IR, not because the long history of white racism in this country has promoted the notion of distinct biological races. While I don’t expect everybody in TR/IR relationships to take up the mantle of anti-racism, I do find it particularly offensive when people in TR/IR families support racist causes or engage in behavior that is generally degrading to people of color. I personally know transracial adoptees whose white parents have made degrading or racist comments or whose parents didn’t know quite what to tell them about why people at school were calling them names. I know of biracial people whose parents have explicitly directed them not to marry into a particular racial group. When TR/IR families engage in this sort of behavior, they set racial progress back.

TR/IR families are frequently under the microscope, and our lives and decisions are often scrutinized by everyone. For many of us this leads to a constant desire to prove that we are normal, that we are not racist, that we love everyone, that we haven’t sold out our own group, that our children won’t be messed up, or that we can handle anything that comes our way. Because we are constantly scrutinized, many of us get tired and defensive. Even though it is hard to do, I think it is important to understand that critiquing racism is not the same as critiquing TR/IR families. So when I say we need to stop viewing TRA as blacks vs. whites and the media needs to stop perpetuating this, I’m not saying TRA is wrong and IR families are bad or anti-black (incidentally some are and some aren’t). These criticisms are directed at the structure of our social institutions not individual TR/IR families. They are commentaries on society as a whole and how racism affects the lives of people. Sometimes we (TR/IR families) spend an inordinate amount of time trying to prove just how normal/mainstream we are. In my own research I heard many people say, we are normal; we are just like everybody else. My sense is that when it comes to TR/IR families we are like all others, some others, and no others all at the same time.

It’s certainly great that TR/IR families now have the right to exist and be recognized, and unfortunately, our society is generally not accepting of our relationships. I suppose this is part of the reason most of my posts are very light on identifying common problems in IR relationships. Most of the time I focus on the problems created by people outside of the TR/IR relationship; however, TR/IR families exist in that outside world, too. We are not above critique–individually or collectively, and in reality we will know we are making progress when we can look at our relationships without having to be defensive. I know we are not there yet, but I would like to push people in that direction.

I worry when we hold ourselves up as the ultimate symbol of progress, when we become overly exuberant and, on rare occasions, go so far as to say our families are better. TR/IR families are not the bellwethers that signal the end of racism. Do they signal a change in our racial ideology? Yes, but we cannot make assumptions about what that change will be and whether or not it will be for the better or the worse. I know that may seem pessimistic to some, but we do have examples in Latin America that show us that interracial families and multiracial people will not lead to the end of racism. TR/IR families shouldn’t be blamed for that any more than anyone else.

(Side Note: I think I could have written a very similar article about same gender families and relationships. I think the idea that same gender relationships inherently challenge sexism is false for some of the same reasons mentioned above.)

I also wanted to add several links to posts on transracial adoptions and interracial relationships.

Republic of T on adopting a black child

Transracial Abductees
a site written by a woman who was adopted by white parents and opposes many aspects of TRA

Harlow Monkey
discussions some of the dynamics of interracial families

Daddy, Papa, and Me
numerous posts on being a transracial adoptive parent

This Woman’s Work
another site run by a parent of a transracially adopted child

Ghetto Gold Naro% has you tube links to stories about TRA (they sooo back up my previous post)

Here’s My Post at Alas It’s worth it to read the comments because they were very different than those on my site.

I’m in a grumpy mood. It’s clearly autumn today, and I love the smell of the air, but it’s dreary outside and my allergies are bad. Inside, I have a meeting this afternoon with the administrator of the home health care agency that manages the nurses who help me. And all the nurses too. The meeting is here in my home with all the people who have to follow me around 24/7, and frankly, I don’t want to see any of them, even the ones I’m especially fond of.

In an old New Mobility article on vents and vent users Barry Corbet writes:

The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.

The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.

My 24-hour nursing care isn’t a matter of choice. If I get help with the cost, the help is required to be medically trained nurses. I don’t know what level of assistance I’d be comfortable with — what I get now appears to be my only choice other than a nursing home. I do need someone around to help me use the bathroom, to suction my lungs of gunk (because the trach disallows the normal process of clearing one’s throat), and to help reconnect tubes should they suddenly fall apart. Or switch vents or get the external battery if there’s a vent or power failure, respectively.

My big beef with my nursing assistance is that it totally medicalizes my life — my normal life at home where I’m not ill. In the hospital I had my “vitals” (blood pressure, temperature, pulse, etc.) taken twice a day, at the beginning of each 12-hour shift. Here at home, since the vitals are supposed to be written on the time sheets each nurse hands in for pay, I sometimes have them taken three times each day. Any remarks by me that “I feel fine, terrific,” would only be anecdotal to the medical evidence of the vitals they are required to collect.*

There are also nursing notes made about my activities for each day. It’s written down if I took a nap, went to Target, visited with a friend, didn’t want lunch, or cleaned the closet with my Mom. I’m sure there are much more intimate details, but I avoid pissing myself off about it all by not reading the log. I do know that if I whack my shin on something accidently, the bruise will probably be noted in the charts. My mother might also be asked about it as a check against my being abused.

These required procedures that do not contribute to the smooth use of my vent are an invasion of my privacy, and there’s nothing I can do about it. And from what I understand I am not even permitted to contribute to the payment of this care since I’m on both federal and state disability aid. There’s no incremental plan. Either I’m wealthy enough to cover it all, or I’m forced to be poor to keep the government paying for it. And there’s no chance of my covering it all.

Vent user Greg Franzen tells a similar story:

“The way the insurance looks at it,” he says, “you need skilled nursing. I agree with that. But if that’s the case, then they won’t pay for attendants. Now if I get attendants to fill in the non-nursing hours and they do a satisfactory job, will the insurance say that I don’t need skilled nursing anymore? That would be devastating. I don’t know if it’s true — I’m too afraid to ask.”

If he lost his skilled nursing care, would a nursing home become a threat? “Very much so,” he says. “People with vents are very, very vulnerable because of the cost issue. And when we have these Dr. Kevorkians running around, and with a budget crisis, I’m a more attractive target than other people just because of the expense.”

It all adds urgency to the cost issue. “Somehow,” he says with finality, “I need to be able to make enough money to take care of myself.”

Greg might seem well-equipped to do that. He graduated in 1990 from the University of Missouri with a degree in environmental design. The trouble is, Greg says, salaries start at about $15,000 a year. “If I’m going to make $15,000 a year, and my costs are over $80,000 a year, what good is that going to do me?”

So he stays at home. In the meantime, how’s his quality of life? “I think it’s excellent.” What makes it good? “My zeal for life. My love of life.”

Quality of life is a topic of the same series of articles linked above (italics are mine):

A 1992 life satisfaction study by John Bach compared responses by 80 Duchenne muscular dystrophy ventilator users to responses by 273 MDA clinic directors. The clinic directors significantly underestimated the users’ reported life satisfaction. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation.

In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who’d had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. Forty-two percent of the ventilator users were employed and 39 percent were married. Yet again, the health professionals used for controls underestimated the life satisfaction of people using ventilators and overestimated the difficulties. It was concluded that physicians should be aware of their inability to accurately gauge the life satisfaction of individuals and should not use their perception of poor quality of life as a reason to deny ventilator assistance.

In a 1994 life satisfaction study by Bach and Tilton, 42 ventilator-assisted quads and 45 autonomously breathing quads were compared to a control group of health care professionals. Both groups with spinal cord injury reported higher life satisfaction ratings than were predicted by the controls. Notably, the ratings for those who used ventilators were higher in some areas than for those who didn’t — the former were dissatisfied with sexual function only, whereas the latter were dissatisfied with their jobs, health and sexual functioning. Vent users said life was friendlier, more interesting, more enjoyable, fuller and more hopeful than non-vent users.

A 1992 study by Whiteneck, Charlifue and Frankel of people with spinal cord injury at least 20 years post-injury showed that those using ventilators rated their quality of life higher than those who didn’t, and had a lower rate of suicide ideation.

I can’t explain why vent users are reportedly happier than similarly-disabled nonvent users, but I have no problem believing it’s true. This vent-using life seems to be underestimated in so many ways by people. And over-regulated.

___________________________________________

*Update: The home health care meeting went extremely well. Apparently, residents in nursing homes only have their vitals checked weekly. (!) Because I have some very smart nurses I am now on the institutional plan. Once each week for vitals, except temperature, which is an indicator of infection. W00t!

Crossposted at The Gimp Parade

Every so often, friends or family members tell me about opportunities for freelance work. Some of the suggestions - the ones that could help me build a writing career - would appeal even if I was childless and working full-time. Others - training to be a translator or proofreader, for instance - probably wouldn’t. But they’re not supposed to: their biggest selling point is that I can work from home while caring for my daughter.

Before I was a parent, it sounded like such a good idea. Rather than having to choose between going out to work and staying at home with my hypothetical child, I could combine both. No need to wonder whether my baby was safe and contented - a glance across the room could put my mind at rest. No need to worry that I was financially dependant on someone else - I would have the security of my own income source.

What I didn’t realise - what I had to learn from firsthand experience - was how intensive the job of looking after a small child is. In my vision of parenthood, the work consisted mainly of physical chores such as washing clothes and preparing meals; in practice the physical work is the easiest part. In addition to the chores, taking care of a child requires a level of concentration that doesn’t sit well with an attempt to build a freelance career.

While my daughter’s awake, she wants my attention. If she doesn’t have it, she quickly realises this and makes sure she regains it by letting out a cry that’s virtually impossible to ignore. For short spells, if I’m doing something I don’t need to think deeply about, I can block out the cries; shutting them out effectively enough to finish an essay is beyond me. And even if, by some miracle, she’s too absorbed in her play to miss my attention, I know she could wriggle into difficulties at any moment. Watching her out of the corner of one eye, constantly alert for the early warning signs that she’s about to need my help, pretty much prevents me concentrating on whatever it was I wanted to write.

That only leaves the times when my daughter’s asleep to work on my freelance projects. And here the problem boils down into one that’s familiar to any woman who does paid work: the second shift. Whether I work on freelance projects or not, I need to spend a certain amount of time on my daughter and associated chores. Trying to add freelance work to the mix means effectively trying to do two jobs at the same time - with exhaustion the predictable result.

But although this arrangement has the same disadvantages the working mother suffers, it doesn’t offer the corresponding advantages. My freelance projects will be speculative, at least initially, so the dream of financial independance remains just that. And, by not going out to work, I’m isolating myself with no colleagues and no potential change of scene. It seems I’ve combined the worst of working with the worst of staying at home.

I’ve heard some people make a success of freelancing with children. I don’t know whether they have money in the bank, contracts in hand, or just a partner willing to subsidise them until their projects get off the ground, but it seems they have something I’m missing. For me, working from home is all problems and no solutions. I’m thinking of training as a teacher instead.

Last year, on CNN’s “Anderson Cooper 360″ show¹, Elizabeth Marquardt, author of Between Two Worlds - which is being re-released in a trade paperback edition this month - had this exchange with Cooper:

Anderson Cooper: Elizabeth, one of the questions that you asked the participants is whether or not they would describe their family as stressful. Fifty-one percent of children of — of what might be termed good divorces agreed with that statement, as compared to only 35 percent of those in unhappy marriages. What do you make of that?

Elizabeth Marquardt: That’s right. One of the striking findings to come out of our study was that children of good divorces often fare worse than those from unhappy marriages, so long as the marriage is low-conflict. And most marriages that end in divorce now are low-conflict.

This is fairly typical of how the Between Two Worlds study was reported - compared to the control group (young adults raised in intact marriages), young adults whose parents divorced fare worse. Elizabeth relies on this comparison often; in the Anderson Cooper interview, she criticizes The Good Divorce author Constance Ahrons’ research for having no control group of nondivorced parents.

Here’s another example, from a New York Times article about the Between Two Worlds study:²

The new survey, based on the first nationally representative sample of young adults, highlights the many ways that divorce shapes the emotional tenor of childhood.

For example, those who grew up in divorced families were far more likely than those with married parents to say that they felt like a different person with each parent, that they sometimes felt like outsiders in their own home and that they had been alone a lot as a child.

Those with married parents, however, were far more likely to say that children were at the center of their family and that they generally felt emotionally safe.

Unfortunately, the methodology of the Between Two Worlds study is fatally flawed, and the research cannot support any of these comparisons. Why? Because respondents were asked different questions depending on if their parents had divorced or not.

For instance, take the finding, reported in the Times, that adults raised by married parents were far more likely to sat “that they generally felt emotionally safe” when they were growing up. This finding is also reported in Between Two Worlds (page 59):

In our national survey, most young adults from intact families strongly agree that when they were grouping up, “I generally felt emotionally safe.” But fewer than half of those from divorced families say the same thing. Young people who grew up in “bad divorces” are less likely to say they felt emotionally safe, but I was surprised to find that even those of us from “good divorces” felt significantly less safe than our peers from intact families with unhappy but low-conflict marriages.”

This finding is based on asking young adults whose parents stayed married to agree or disagree with the statement “I generally felt emotionally safe.” In contrast, those whose parents divorced were instead asked “After my parents’ divorce, I generally felt emotionally safe.”³

So the respondents in the control group were asked about their childhood in general. In contrast, the respondents from divorced families were asked to focus specifically on a major family trauma. Given the biased questioning, it would have been a miracle if Elizabeth didn’t find major differences between the two groups. But it doesn’t tell us anything about outcomes, or about long-range trauma. The study design cannot distinguish between those who were unhappy for a while in the post-divorce period, but who on the whole recovered; and those who were left with long-term, ongoing trauma due to their parents’ divorce.

In the Times article, Robert Emory (of the University of Virginia’s “Center for Children, Families and the Law”) said ”The key is to separate pain from pathology.” This is the distinction that the Between Two Worlds study failed to make.

To see why this matters, imagine doing a similar study, this time dividing respondents into those who had pets who died, and those who didn’t. If you asked the “no pet” group if they felt emotionally safe as kids, but asked the “pet died” group if they felt emotionally safe after their pet’s death, probably many more of the latter group would say they didn’t feel emotionally safe. But would that tell us anything about the long-range outcomes for these two groups? Would a direct comparison of the two groups, as if they had been asked the same question, be appropriate? Of course not. A question about a particular, traumatic period in childhood cannot be used to characterize a respondent’s upbringing on the whole.

According to Elizabeth Marquardt, the respondents from divorced families were “periodically” reminded to focus on the period after their parents’ divorce throughout the survey. This means that almost none of the comparisons between divorced and non-divorced families in Between Two Worlds have any validity. For instance, the finding that Anderson Cooper focused on, that those from divorced families are more likely to “describe their family as stressful,” seems unremarkable when you keep in mind that the respondents were asked only about stress “after my parents divorce.” What child wouldn’t find that time stressful? But it doesn’t prove that their upbringing was more stressfel as a whole.

Even results from questions that didn’t include a “after my parents’ divorce” provision are dubious, in my eyes, because the context of the survey as a whole is changed by constantly asking those with divorced parents - and only those with divorced parents - to focus on a painful memory. The poor methodology taints the entire survey.

One finding from Between Two Worlds that Elizabeth emphasized is that “grown children from unhappy, low-conflict marriages generally fare better than those from ‘good’ divorces.” I doubt this finding would have been as strong — or existed at all — if this survey had asked the control group the same questions. Even the current, flawed results show some cases in which those raised by “good divorce” parents appear to be better off than those who parents stayed together. For instance, contrary to the New York Times’ reporting, those raised in “good divorce” families were slightly less likely to feel “like an outsider in my home,” than those whose parents stuck with unhappy marriages.

How much “extra” unhappiness, doubt and misery did Between Two Worlds measure by asking those with divorced parents, over and over, to think of “after my parents divorce?” There’s no way of knowing, but it could have been a large effect. Even a small effect could have seriously changed the finding that “grown children from unhappy, low-conflict marriages generally fare better than those from ‘good’ divorces,” because in many cases the statistical difference between those two groups was fairly small.

When I asked her about the difference in questions on her blog, Elizabeth responded:

Since we were studying post-divorce childhood, we asked those from divorced families to answer the question in regard to “after your parents’ divorce” and reminded them of that periodically through the interview. …If you want to study post-divorce childhood you have to ask people about, well, post-divorce childhood.

I thought they were studying the long-term effects of divorce. If it’s true that a person whose parents divorced when they were a child is significantly more likely to recall their upbringing as emotionally unsafe, stressful, etc., then that effect should show up without loading the question by asking subjects to focus specifically on the divorce.

If Elizabeth fears that subjects whose parents divorced when they were older - say, 10 or 15 - would have put too much weight on their pre-divorce time, then she should have asked her questions bounded by period (”When you were between 10 and 15 years old….” and so on). Then all respondents could have been asked the same questions, and the results examined for differences pre- and post- divorce. Failing to ask the control group the same questions is not a small design flaw; it’s a catastrophic error that invalidates all results based on comparisons to the control group.⁴

Between Two Worlds proves that many young adults whose parents divorced recall the period “after my parents divorce” as painful and confusing. However, nearly all⁵ of the study’s conclusions — including the conclusion that “grown children from unhappy, low-conflict marriages generally fare better than those from ‘good’ divorces” — are based on an invalid study design. In particular, most findings from Between Two Worlds based on comparisons to the control group should be regarded as invalid and unproved.

(Related material: See the STATS critique of Between Two Worlds, including a response by Marquardt and Glenn, here and here.)

[Crossposted at Creative Destruction, where co-bloggers stay together for the sake of the readers. If your comments aren’t being approved here, try there.]

UPDATE: Read comment #18, for another significant flaw in this studies’ methodology.

1. ”Anderson Cooper 360,” November 22 2005. (back)
2. ”Poll Says Even Quiet Divorces Affect Children’s Paths,” New York Times, November 5 2005, p. A13. (back)
3. Source: Appendix “B” of Between Two Worlds, page 117, available online as a pdf file. (back)
4. It’s notable that this study was put together by an anti-divorce think tank, and has never been subjected to peer review. It’s natural to wonder if the peer review process could have forced the study’s authors, Elizabeth Marquardt and Professor Norval Glenn, to improve their methodology. (back)
5. I say “nearly all” because some of the findings — such as the greater likelihood of divorce among children of divorced parents — would not have been effected by the bad study design (back)