Category Archives: race

Why I Am Not a Libertarian

Here in the U.S., there’s been a lot of buzz about Rand Paul, son of Ron Paul, winning the primary for Republican senator in Kentucky. Paul is a darling of the Tea Party and largely espouses libertarian values of decreased taxes and decreased government regulation and intervention.

There are some things about libertarianism that I like and agree with. I’m against state interference in romantic and/or sexual relationships between consenting individuals with full capacity. I’m in favor of strong civil liberties and freedom from search or surveillance by the state.

But I do not trust the free market to take care of civil rights issues, primarily because I’ve seen the free market fail to take care of civil rights issues for hundreds and really thousands of years. And I believe that getting the government out of the business of defining and enforcing civil rights would have disastrous results for all but the most privileged among us. And Rand Paul’s espoused views bear that out. Here’s what he’s got to say about LGBTAI rights and women’s health:

Not only is Paul perfectly fine with government prohibiting marriage between gays and lesbians, it bears mentioning that Paul’s anger towards the government for “betraying the medical privacy of ordinary citizens” doesn’t extend to women, whom he believes should be forced to carry unwanted pregnancies to term if state legislators deem it so. He also wants to offer legislation “restricting federal courts from hearing cases like Roe v. Wade.”

This isn’t even a consistent position – Paul is in favor of government intervention in personal relationships, as long as it’s “only” LGBTAI relationships. He’s also in favor of government intervention in personal medical decisions, as long as it’s “only” affecting the decisions of women considering whether to terminate a pregnancy. What he has to say about protections for people with disabilities is even more troubling:

You know a lot of things on employment ought to be done locally. You know, people finding out right or wrong locally. You know, some of the things, for example we can come up with common sense solutions — like for example if you have a three story building and you have someone apply for a job, you get them a job on the first floor if they’re in a wheelchair as supposed to making the person who owns the business put an elevator in, you know what I mean? So things like that aren’t fair to the business owner.

Yes! Let’s let the free market take care of rights for people with disabilities! Because it’s for damn sure that even with the existing governmental protections for civil rights, companies are taking an unbiased and totally not ableist at all approach to employing PWDs and even accommodating them as customers! So eliminating those marginally adequate and woefully underenforced protections would surely have the effect of enhancing overall liberty and freedom! That is, if you are looking only at the liberty and freedom of the already privileged.

There has been a lot of discussion on this site of how entrenched institutional ableism results in discrimination against PWDs, makes them more likely to live in poverty, lack employment, and have disproportionately negative health outcomes. That’s the status quo that would be preserved if government intervention and regulation of the rights of PWDs were to end. But there are definitely people who are benefiting from the status quo – white, cis, hetero, TAB men, predominantly. And we should be very clear that limiting government intervention would primarily preserve the status quo that benefits them.

Which is why you should not be surprised by two facts: 1) Rand Paul is a white cis hetero TAB man, and 2) I strongly disagree with these political ideas. While there are some areas in which I support limiting government intervention, my overall goal is to maximize rights of historically disadvantaged and relatively unprivileged populations, whether it takes more or less government to reach that end.

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!

Go educate yourself (please!)

Image description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.

[Image via Tlönista in this comment thread at Flip Flopping Joy. Description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: “Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.”]

One unfortunately common response to marginalized people saying that there’s a problem is the “Educate me NOW” demand from “well-intentioned allies” who totally mean well, but they just lack education on these issues and so just can’t understand what the fuss is all about.

I am using the following example not to appropriate from the awesome anti-racist work that Jessica Yee and the fabulous Racialicious crew (and countless bloggers around the web!) do on a daily basis, but rather for two specific reasons: 1.) I have already talked about my personal relationship with this oft-used derailing tactic rather extensively, and could probably talk about it ’til I’m blue in the face; 2.) anti-racist activism and disability activism are not completely separate, independent social justice strains — many of us who are involved in these activist projects are, in fact, fighting similar (though NOT completely analogous) battles. For me, claiming an identity as a feminist disability activist has entailed doing my best to fight racism and white privilege alongside fighting for disability rights. This is because disability and race intersect in many, many ways — sort of like how disability and gender, and race and gender, intersect. In other words, this is not just a disability issue, or a feminist issue,  or a trans* issue, or an anti-racist issue; it affects many of us in the social justice blogosphere, if in differing ways.

The “educate me now because I want to learn, marginalized person!” response played out, yet again, fairly recently in the comments to a post on Bitch authored by Indigenous activist and writer Jessica Yee. [Full disclosure: Some of us here at FWD guest blogged for Bitch as the Transcontinental Disability Choir.] Jessica had written a post on white hipster/hippie appropriation of native dress and why it’s not only ridiculous, but racist. Makes sense, right? (If it doesn’t, you might be at the wrong blog. Or go read this. I don’t know.) Overall, this piece seems like it would fit right in on a website for a magazine that is dedicated to showcasing “feminist response[s] to pop culture.”

And then the comments started rolling in, and so did the “but you have a responsibility to educate people who mean well!” trope:

I’m sure this is in fact extremely annoying. However, you might consider that when people bring that up, they’re not saying, “Hey I’m just like you and I totally understand what you deal with,” they’re trying to make a connection and learn something. Ignorant people are a pain in the neck, but they’re mostly not trying to be ignorant on purpose.

I‘m merely suggesting that if this is a cause you deem worthy of championing, then you should have a prepared source of information for them—be it this blog, book titles, or documentaries. Encourage them to learn more about THEIR history and perhaps you’ll draw a new soldier to your army.

It seems somewhat contradictory to put stickers on your laptop that indicate a Mohawk heritage and then rudely dismiss a stranger who expresses an interest in your advertisement. Perhaps a better way to accomplish your agenda (whatever it is) would be to engage in polite and open-minded conversation with those who mistake your stickers for an invitation.

Thea Lim at Racialicious pretty much nailed it in her recent post on what went down, entitled “Some Basic Racist Ideas and some Rebuttals, & Why We Exist” (which I highly recommend that you read in full, by the way). An excerpt:

This kind of hey-let-me-help-you-achieve-your-goal-by-suggesting-you-be-more-radio-friendly response totally misunderstands (and appears disinterested) in the anti-racist project, because it assumes that anti-racism is all about convincing white people to be nice to people of colour.   In other words, it assumes that anti-racism revolves around white folks.  Like everything else in the world.

Anti-racism and people of colour organizing is not about being friendly, being appealing, or educating white folks. While individual anti-racist activists may take those tacks to achieve their goals, the point of anti-racism is to be for people of colour.

I completely agree with Thea here — and I believe something similar applies to disability activism. That is: Those of us with disabilities are not here to make abled people feel comfortable, to hold their hands as they have a Very Special Learning Experience (most often, it seems, at our expense), or to make them feel good about themselves. I, personally, don’t care how “good” your intentions are, or that you reallllllly wanna learn, or if you think I’m being mean by not dropping everything to educate you when you demand it.  While I definitely don’t want to speak for Jessica, Thea, or any of the Racialicious contributors — or for people of color who do anti-racist work — I suspect that they may feel similarly about white people who come into PoC, WoC or other anti-racist spaces and demand that whoever is doing the activist work must halt whatever discussion is going on and educate them, now, because they are good “liberal” white people and have such good intentions, and you PoC want white people like me as allies, right? And if you don’t drop everything and rush over to educate me, well, you’re just a big meanie who must not want my support after all (such “support” is often conditional, and based upon whether the marginalized person can make the non-marginalized feel comfortable at all times), or you just want an excuse to be racist toward white people! Or some other ridiculous thing.

For me personally, the willingness that I “should” have to help well-meaning folks learn is also an energy issue. I am a person with disabilities, several of which I have written about at length on this website — and one of which is a pain condition subject to flare-ups. Thus, I have to manage my time and energy extremely carefully. Having to explain basic concepts over and over again to strangers on the internet because they’ve deigned to tell me that they “want” to learn — and some of whom may think, by extension, that they are somehow entitled to my time and energy — takes work. Writing takes work; additionally, a lot of bloggers do the blogging and responding to comments thing for free, on their own time.

And sometimes, those of us with conditions that intersect with our ability to do this work end up burnt out, frustrated, or we lose our patience. Though these end results are often nothing personal, they might read like it, and we end up paying the price energy-wise only to have that person who realllllly wanted to learn petultantly respond with something like, “You must not want to educate me, then, if you’re not up to answering all of my questions!” and leaving in a huff. But they reallllly want to learn. . . that is, if someone else does the brunt of the work for them and/or gives them good-ally cookies for just wanting to be educated about all this social justice stuff. Merely wanting is not enough; you have to actually follow through for your good intentions to matter.

There is, thankfully, a solution to this problem: those people who say, or comment, that they realllly want to learn must take responsibility for their own learning. There are several ways that this can be accomplished, among them lurking on blogs for a while before one starts commenting, reading a site’s archives (and most sites have them!), picking up a book (or two), reading some articles online or off. Certainly, there are a lot of things that are privileged about this assertion; of course, not everyone has the time to read about social justice, lurk on blogs, or take similar steps. But what is also privileged is the putting the responsibility for your own 101-type education onto someone else — someone who might not have all of the energy, time and patience that you might.

[A slightly different version of this post has been cross-posted at ham blog.]

Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.


This Terrifies Me

Here in the U.S., there’s been a lot of buzz about a new immigration law passed in Arizona (including on meloukhia’s tumblr, where I first saw it). Their state legislature just passed a bill that “makes it a crime to lack proper immigration paperwork and requires police, if they suspect someone is in the country illegally, to determine his or her immigration status. It also bars people from soliciting work as day laborers.”

This is a big change from the current situation. Because immigration is a nationwide issue, the federal government makes the immigration laws. There is a federal Department of Citizenship and Immigration Services that administers applications for immigration status. There is a whole department of Immigration and Customs Enforcement with quasi-police enforcement agents that put people in quasi-jail immigration detention facilities. It’s a whole federal system that runs parallel to the police and sheriffs who work for individual cities and counties.

For a long time, not only were local police not solely responsible for enforcing federal immigration laws, it was a longstanding rule that state and local police did not have the authority to enforce those laws. State and local police actively tried to distinguish themselves from immigration enforcement so that community residents who were immigrants would continue reporting crimes and helping the police with investigations. The split between responsibilities serves an important purpose in protecting overall public safety.

This is why it’s a big deal that this new law would require local police to determine the immigration status of anyone they suspect to be in the country illegally. Given the vague description of what would be an acceptable reason to suspect someone to be undocumented, it’s extremely likely this is going to translate to “check the papers of anyone who is Latina/o.” “A lot of U.S. citizens are going to be swept up in the application of this law for something as simple as having an accent and leaving their wallet at home,” said Alessandra Soler Meetze, president of the American Civil Liberties Union of Arizona.

Certainly a police officer fulfilling their requirements under this new law might in fact discover that someone is undocumented. But this law also gives every police officer carte blanche to insist on immigration paperwork from anyone they want – another tool for harassment and intimidation that will surely be deployed selectively. It warns not only undocumented people, but all immigrants and anyone who might appear to be or resemble an immigrant in any way – stay inside. Disappear. Vanish. We do not want you here and if we see you we will hassle and interrogate and judge you.

This law just used the official voice of the state to tell this whole group of people – most of them people of color, most of them legally present in the U.S. – that they are not wanted.

That message of not being wanted, that directive to become invisible and disappear, that clear desire that a whole group would just go away and stop being a bother. That’s the same feeling I get when reading articles like this one in the Fresno Bee bemoaning an effort to get local businesses to provide accommodations for people with disabilities. Just think of the economic effect on local retailers! They’ve been open for 20 years! How dare the PWDs file lawsuits instead of just asking the proprietor who I’m sure is very nice and would just love to help out voluntarily! The message is the same – having PWDs here is too expensive. Too much work. Something to be given only out of the generosity of those in charge, not demanded. If only the PWDs would just go away our local businesses would be fantastic!

In one instance, popular opinion and the business community are telling PWDs to go away or be invisible. In the other instance, the state government is telling immigrants to go away or be invisible. Both are premised on the acceptance of the idea that it’s ok to look at a minority group of people and reject them, as a group. That’s why I reacted negatively to both those news articles – it is not ok to oppress people as a group. If it’s ok to treat immigrants that way in Arizona, that legitimizes treating PWD that way in Fresno. And this law is such a big step in the wrong direction that it makes me worried about similar erosions for other groups – including PWDs.

Disability Representation in Music (Video), You’re Doing It Right: Janelle Monae’s “Tightrope”

This recent music video from singer-songwriter Janelle Monae is a great example of how not to completely screw up representation(s) of disability. Lyrics are located here.

And a description, courtesy of FWD’s own S.E.:

A black title card reads: ‘The Palace of the Dogs Asylum: Dancing has long been forbidden for its subversive effects on the residents and its tendency to lead to illegal magical practices.’

Two people in tuxedos are seen sitting against a white tiled wall. One is reading a book and the other is playing with a small ball, which eventually drifts up and floats in the air. The reader turns to see it and looks surprised.

Cut to an ominous-looking institution with a sign in front reading: ‘The Palace of the Dogs.’ Bright yellow text reading: ‘Monae and Left Foot: Tight Rope’ overlays the image as bouncy music plays.

Cut to a scene of a nurse pushing a cart full of medications. The scene starts with her feet, in sensible white shoes, and slowly pans up. She is moving down a hallway. As she proceeds, a woman (Janelle Monae) in a tuxedo without a jacket, with her hair in an elaborate sculpted pompadour, peers out the door of her room and then ducks back in. As she closes the door, we cut to her in her room, leaning against the door, and she starts singing.

The video cuts back and forth between the nurse moving down the hall, Monae singing and dancing in front of a mirror, and two ominous figures with mirrors for faces draped in black cloaks, seen from a distance. She eventually puts her jacket on and moves out of her room, softshoeing down the hallway, and other people, also in tuxedos, join
her. They storm into a cafeteria, where a band is playing, led by Big Boi, wearing a peacoat, a scarf, and a snappy hat. Monae jumps up onto a table and starts dancing, while people dance all around her.

As everyone dances, the nurse is seen peering around the corner with an angry expression. The scene cuts to the nurse gesticulating at the black-robed figures, who start to glide down the hallways and into the cafeteria. Monae dances right out of the wall, leaving an imprint of her clothes against the bricks, and ends up in a misty forest in what appears to be afternoon light, where she is pursued by the gliding black figures. Leaves cling to their cloaks. Evading them, she walks through a concrete wall, leaving another impression of her clothes behind, and she winds up in the hall again, where she is escorted by the robed figures. The video cuts back and forth between scenes of her
walking down the hall and the scene in the cafeteria, where music still plays and people still dance.

As she walks, a man in an impeccable suit and top hat walks by and tips his hat to her. She goes back into her room while people dance in the hall. The camera closes in on a table covered in papers and a piece of equipment which looks like a typewriter. She types a few keys, and then touches the papers, which turn out to be blueprints marked with ‘The Palace of the Dogs.’ She sits down on her bed,  rests her chin on her hand, and looks into the camera. The music fades and the scene cuts to black.

I really like what Cripchick has to say about this video: “i love the way that this video A.) critiques psychiatric institutions and B.) shows the ways that institutions/society/ableism polices our whole beautiful creative selves because if unleashed, we are powerful/uncontrollable.”

Additionally, I thought the cloaked figures were an interesting representation of the concept of the looking-glass self; another interpretation might be that they represent Bentham’s panopticon, or the sort of menacing, omipresent societal structure in which we must police ourselves constantly in order to be considered “normal.” Those are just two ways of looking at one aspect of this video, however.

What do you all think?

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Black, Hispanic, Poor people wait longer for breast cancer treatment, experience more recurrences

In the USA, Black women have the highest mortality from breast cancer of any other group, despite the rate of diagnosis of breast cancer being highest in White women. Hispanic women have a lower breast cancer diagnosis incidence than either, but mortality rates are disproportionately high in Hispanic women also. Here are the CDC incidence and mortality statistics over time:

“Incidence rate” means how many women out of a given number get the disease each year. The graph below shows how many women out of 100,000 got breast cancer each year during the years 1975–2005. The year 2005 is the most recent year for which numbers have been reported. The breast cancer incidence rate is grouped by race and ethnicity.

For example, you can see that white women had the highest incidence rate for breast cancer. Black women had the second highest incidence of getting breast cancer, followed by American Indian/Alaska Native, Asian/Pacific Islander, and Hispanic women.

Breast ca incidence stats showing White women at highest risk

The graph below shows that in 2005, black women were more likely to die of breast cancer than any other group. White women had the second highest rate of deaths from breast cancer, followed by women who are American Indian/Alaska Native, Hispanic, and Asian/Pacific Islander.

Breast ca mortality stats showing Black women at greatest risk

A number of contributors to this disproportionate mortality have been proposed, including environmental toxin and pesticide exposure, more aggressive tumours, and later diagnosis. Most alarmingly, the mortality gap seems to be widening.

This week’s British Medical Journal (BMJ) has an important article today demonstrating one of the consequences of healthcare racism in the USA:

Impact of interval from breast conserving surgery to radiotherapy on local recurrence in older women with breast cancer: retrospective cohort analysis[1]

The researchers analysed national cancer records for 18,050 US women, aged 65 or older and otherwise non-disabled, who were diagnosed with early stage breast cancer during an eleven year period to 2002, and who received breast conserving surgery and radiotherapy, but not chemotherapy.

30% of the women in this study had to wait more than six weeks after their surgery before they could have radiotherapy. Delays greater than six weeks were associated with a modest but significant increase in local recurrence of the breast cancer.

The study also showed that there was a continuous relationship between radiotherapy delays and local recurrence; the sooner radiotherapy was started, the lower the risk of cancer recurrence, and this relationship was strong. This is concordant with previous studies.

So who was subject to these long, risky delays in treatment?

Sadly, the answer will not surprise you: Black women, Hispanic women, and poor women. Black women were almost 50% more likely to experience a longer than six week gap before radiotherapy treatment, and Hispanic women experienced a 30% increase in risk of delay.

The followup was only five years long in this study, and breast cancer tends to be a cancer that bides its time; the increase in risk (and in consequence mortality) may be greater, even much greater, with longer followup. In addition, as local recurrence risk tends to more common in younger women and this study focused on older women, the effect could be more pronounced in the total population of those with breast cancer. In addition, the study studied mostly White women, as Black women tend to get their cancers younger and have a decreased likelihood of receiving breast-conserving surgery and radiotherapy. In other words, this study was set up in a way that made it, in some ways, particularly difficult to find a significant difference in the effect they were looking at; the fact that they still found one means that the effect is likely to be really quite pronounced.

The accompanying BMJ editorial by Ruth H Jack and Lars Holmberg[2] goes on to suggest one possible model of healthcare delivery that might alleviate these delays:

One good example of how practices can be improved is the Rapid Response Radiotherapy programme in Ontario. This programme has drastically shortened waiting times for patients having palliative radiotherapy by restructuring the referral process so that many patients are treated on the same day as their consultation.9 Countries where disconnected systems are responsible for different aspects of treatment will find it more difficult to ensure that diagnosis, referral, and treatment are not subject to delay.

++++++++++++++++++++++++++++++++++++++++++

[1] Impact of interval from breast conserving surgery to radiotherapy on local recurrence in older women with breast cancer: retrospective cohort analysis
Rinaa S Punglia, Akiko M Saito, Bridget A Neville, Craig C Earle, Jane C Weeks.
BMJ 2010;340:c845; Published 2 March 2010,
doi:10.1136/bmj.c845

[2] Waiting times for radiotherapy after breast cancer
BMJ 2010;340:c1007
Published 2 March 2010,
doi:10.1136/
bmj.c1007

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

Come filk with us – “Special Treatment” for PWD

Paul Kelly, if you’re not familiar with him, is a bloody marvellous Australian singer-songwriter. Some consider him the “poet laureate of Australian music”. He writes everything from fun-but-pointy ballads – Every Fucking City is one of my favourite anti-hero pieces – to political protest music.

You can read a little about him here at Debbie Kruger’s:

But there are songs that have specific intent – the ones for which he is known as “political commentator.” Songs such as “From Little Things Big Things Grow,” which he wrote with Kev Carmody about Aboriginal Land Rights, “Treaty” with Yothu Yindi on Land Rights and Reconciliation and “Little Kings,” from a more recent album Words and Music, about dissatisfaction with the Government. “Those songs are the exceptions,” Kelly concedes. “’Special Treatment’ is another one like that, a specific situation and write to it.”

Check out the song:

Lyrics are here. For those who can’t access the Youtube, it’s performed in a folky acoustic-guitar sort of way.

“Special Treatment” is a great example, in my opinion, of a piece of protest music written in first-person, using the point of view of members of a marginalised group of which the singer is not a member (I think, and please correct me if I’m wrong). Kelly is deeply respectful of the history, takes his subject seriously while introducing elements of dry humour, and has collaborated extensively with artists in the group in question. The piece targets authority sharply and with bite; its impact does not on stereotypes, mocking, fetishisation, or Othering of Aboriginal and Torres Strait Islander people.

I’m acutely aware that I run the risk of ‘splaining here, and I suspect that similar grievance-politics dynamics apply elsewhere in the world: but just to dip both toes in and take that risk for a moment: a common complaint among white middle-class Australians (WMCAs) is that Aboriginal and Torres Strait Islander people in Australia get “special treatment” from government. WMCAs complain when there are funded Aboriginal health services attempting to make tiny inroads into the appalling longevity statistics, the 20-year Gap, the rates of trachoma and hookworm and pneumonia and STDs and nutritional deficiencies. WMCAs complain when there are tutoring and bridging programs assisting Aboriginal people from remote areas to go to university, attempting to address the massive gulf between educational opportunities, entrenched discrimination, and difficulties of transitioning from remote areas to urban universities with a completely different cultural milieu.

WMCAs complain when Aboriginal people who are out of work are offered barely enough support to not starve their families; when there are programs to assist the Aboriginal prisoners who survive prison to transition back to the community; when mental health support programs are offered in an effort to reduce the 8x suicide rate among young Aboriginal people; when STD and contraception services are funded for young Aboriginal women who are raped at extraordinary rates; when funding for domestic violence and violence reduction programs are offered to women who live in fear. All this and more is dismissed as unfair “special treatment”.

In response to a post I wrote responding to a post by CarrieP at Big Fat Blog – in which Carrie wished that fat people were offered the same level of “special treatment” and respect that people with disabilities are – megpie wrote a touching filk to the tune of Kelly’s “Special Treatment”. (OK, verse three is the same – and applies pretty precisely to the situation of forcibly-institutionalised PWD.) Check it out (while listening to the Kelly original, if you can) – and add your own verses in comments.

I can’t enter my child’s classroom
Although the door’s right there
I’m stuck outside my child’s classroom
Blocked by a single stair

I get special treatment
Special treatment
Very special treatment

I’d like to work an eight hour day
In an office on main street
But they won’t offer me the same pay
Or add a ramp my chair needs

Say it’s “special treatment”
Special treatment
Very special treatment

Mother and father loved each other well
But together they could not stay
They were split up against their will
Until their dying day

They got special treatment
Special treatment
Very special treatment

Mama gave birth to a healthy child
A child she called her own
Strangers came and took away that child
To a stranger’s home

She got special treatment
Special treatment
Very special treatment

I’m not allowed to cry out loud
I’m not allowed to scream
I’m not allowed to show my rage
I’m not allowed to dream

After all, I get special treatment
Special treatment
Very special treatment