Category Archives: race

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

Newsflash: Poverty is Bad for Your Health

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also,  PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

For Cereal, Cute Overload?

A periodic feature in which we highlight some of the more ableist posts and comments in the blogosphere – the things that made us throw up our hands and ask “FOR CEREAL???”

I’m late on this one, but that doesn’t make me any less upset. Cute Overload is one of the best and most regular suppliers of the cuteness I so often need to take the edge off the day, but it’s becoming increasingly problematic. They have a continuing series called Cats n Racks, featuring photos of kittens placed in cleavage, usually cutting off the woman’s head. Recently the site posted a picture of a extremely wrinkled puppy with lots of excess skin and compared it to Eleanor Roosevelt (described here at Filthy Grandeur). She also points out a recent photo of a wallaby titled “The New Slave Girl, She Intrigues Me,” captioned with what sounds an awful lot like a rape fantasy.

Not content to settle for racist and sexist, the site went for a hat trick and added ableist to their list! In their post reviewing the ten most popular posts of 2009, number five is a photo of a bunny with a long forelock brushed over one eye, called “Emo Bun.”

a small grey bunny looking to the side, with a long forelock of fur falling over one blue eye.

The text reads “On June 18, Stephanie N. took a minute from cutting herself to send us this awesome shot, an emotional bunneh.” The alt-text for the photo of the bunny reads “No Mom I was NOT cutting myself!”

FOR CEREAL, CUTE OVERLOAD? I’ve written at length about my issues with the term “emo” elsewhere, but beyond that, the multiple references to cutting are 100% non-negotiably inappropriate. Having an undeniably cute bunny whine about cutting minimizes and dismisses the very real pain of people who do self-injure. It implies that self-injury is a choice as superficial and changeable as a trendy hairstyle and that it’s done to fit into a trend. It’s not funny. And it’s certainly not cute.

Haiti

As you’re likely aware, an immensely destructive earthquake struck Haiti on January 12, 2010. It was centered in the capital city Port-au-Prince, home to over 2 million residents, and destroyed buildings, food and water systems, hospitals, and seemingly the national government. The information and photos coming out of the country have been disturbing and heartbreaking. The full scope of the damage – to the people, to the country – has yet to be determined, but it is surely catastrophic.

The effect of the disaster on Haitians with disabilities is similarly devastating. Although the earthquake and subsequent building collapses happened so quickly that neither PWD nor TAB had an opportunity to get to safety, conditions after the quake are likely disproportionately difficult for PWDs. The streets are covered in debris and destruction, there is no electricity, and people need to scavenge for any available food and water. Additionally, literally all of the medical facilities in the city were destroyed in the quake, so there is no access to medications, doctors, anything. Even now, four days after the quake, there is extremely limited emergency care in Port-au-Prince, with people traveling 6 hours by car to one of the few undamaged hospitals in the country for emergency surgery.

In addition, there are an untold number of people who are newly disabled due to the catastrophe and its aftermath. Most of the injuries are open compound fractures, where broken bones have penetrated the skin. These require immediate surgery to re-set the bone and close the wound to prevent infection – which injured patients haven’t been able to get. These people haven’t gotten food and water, much less antibiotics.

Dr. Jennifer Ashton reported that “most of these patients have not eaten in three days. They are profoundly dehydrated and they have crush injuries to their long limbs, upper arms, body and, in some cases, open pelvic fractures, which set the scene for some very serious and life-threatening infection. In addition, when limbs get crushed like that, if they don’t have surgical management immediately, they risk losing that limb as the swelling and infection really take off and that’s what we’re seeing.” Ann Curry reported that desperate doctors were performing surgery on injured children without anesthetics. It is also likely that a number of survivors will develop Post Traumatic Stress Disorder. After the tsunami of 2004, PTSD rates averaged about 10% in the population.

It’s important to note that not everyone injured in the quake is subject to these conditions. American citizens were evacuated by U.S. Air Force planes and other chartered planes to be treated in United States hospitals. This Anchorage woman had her lower right leg crushed by rubble and was then evacuated to a hospital in Miami, where her foot was amputated. These conditions are affecting people without the money or resources to get adequate care. And they are exacerbated by the poverty and unstable infrastructure that existed prior to the quake. (Which the U.S. and France and other colonial powers created and sustained, but that’s more than I can get into with this post.)

It is easy to feel overwhelmed by this, but there are things you can do to help:

FINANCIAL DONATIONS

  • Portlight Strategies, Inc. focuses on Haitians with disabilities. It works with a community of Catholic nuns who will be opening shelters in Port-au-Prince for PWDs, and donated funds will go to “defray shipping costs of medical and clinical equipment … and for the purchase of food and other shelter supplies.”
  • Healing Hands for Haiti has been providing prosthetic and orthodic services and supplies to Haitians with disabilities since 1998 and will be deploying staff and equipment to help PWDs.
  • Christian Blind Mission, an organization focused on PWDs in the developing world, partners with local organizations in a number of medical facilities throughout Haiti. Donations will “support its Partners in the affected area with emergency assistance and long-term rehabilitation and reconstruction efforts.”

IN-KIND DONATIONS

  • Aid for AIDS is collecting medical supplies, including unused medications. They are especially interested in antiretrovirals to help Haitians with AIDS whose treatment has been interrupted by the disaster. There are drop-off points throughout the US, or you can send them to Aid for AIDS at 120 Wall Street, 26 Floor
    New York, N.Y. 10005.
  • Partners in Health is also seeking donations of these specific items: “need specific items urgently:  orthopedic supplies, surgical consumables (sutures, bandages, non-powdered sterile gloves, syringes, etc), blankets, tents, satellite phones with minutes, and large unopened boxes of medications. No small quantities or unused personal medications will be accepted.

Please also remember to take care of yourself during this time. It’s been easy for me to spend hours reading articles, looking at photos, watching footage, and feeling increasingly overwhelmed and helpless. Don’t lose track of your own health and well being.

Jordan’s Principle

This post was originally published in July 2009 as part of International Blog Against Racism Week

One of the things that we talk about here, on occasion, is how lucky we are that Don is a white man with a disability living in Canada. Things become more complicated in my post-racial utopia of a country when someone of a different race is born with a disability.

Take, for example, the case of Jordan River Anderson, a First Nations boy from Norway House Cree Nation in Manitoba. Jordan was born with “complex health needs” (this is code for Carey Fineman Ziter Syndrome, a rare muscular disorder) and spent the first two years of his life in hospital. At that point, his doctors agreed that he could go home and live with his family, although he would need continuing care.

If Jordan hadn’t been First Nations, he would have gone home, and his care would have been paid for by the provincial government as part of his health care costs. However, as a First Nations child, the cost of Jordan’s care became an argument between the provincial and federal government. Neither wanted to pay for it, so Jordan stayed in hospital.

He died at age 5, having never been home.

First Nations advocates came together and wrote Jordan’s Principle:

Under this principle, where a jurisdictional dispute arises between two government parties (provincial/territorial or federal) or between two departments or ministries of the same government, regarding payment for services for a Status Indian child which are otherwise available to other Canadian children, the government or ministry/department of first contact must pay for the services without delay or disruption. The paying government party can then refer the matter to jurisdictional dispute mechanisms. In this way, the needs of the child get met first while still allowing for the jurisdictional dispute to be resolved.

This was adopted unanimously by the Canadian Government in December, 2007.

In principle.

Special Needs Kids May Be Forced Into Foster Care (May, 2008):

Government infighting has families in a northern Manitoba community in anguish about how to best care for their children.

The Norway House Cree Nation has told the families of children with special needs that they may be forced to give up their children because the First Nation can no longer pay for their care, and federal and provincial governments can’t agree on who should pay.

Charlene Ducharme works with the Kinosao Sipi Minisowin Agency, a social agency on the reserve, and said she has yet to see Jordan’s Principle in action. She said the children of Norway House deserve the same care that other Manitoba children get.

“Our premier said Manitoba would be the first one to implement Jordan’s Principle… we’re still waiting.”

Late in 2008, the Manitoba Government also adopted Jordan’s Principle.

However, in reality, very little has changed. According to a UNICEF report issued this year, in honour of the 20th Anniversary of the Convention of the Rights of the Child, First Nations, Metis, and Inuit children in Canada still suffer in comparison to other children:

1 in 4 First Nations children lives in poverty compared to 1 in 9 Canadian children on average.

In cities of more than 100,000 people, approximately 50 per cent of Aboriginal children under the age of 15 live in low-income housing, compared to 21 per cent of non-Aboriginal children.

In contrast to the national infant mortality rate of 5 infant deaths per 1,000 live births, the rate is 8 per 1, 000 among First Nations and 16 per 1,000 in Nunavut (where 85 per cent of the population is Inuit).

Only 63 per cent of First Nations children on selected reserves accessed a doctor in 2001; 46 per cent of Inuit children and 77 per cent Métis children did so, compared to 85 per cent of Canadian children on average.

Between 33 and 45 per cent of Inuit, Métis and First Nations children (on and off reserve) report chronic illness.

On-reserve First Nations child immunization rates are 20 per cent lower than in the general population, leading to higher rates of vaccine-preventable diseases.

38: The percentage of deaths attributable to suicide for First Nations youth aged 10 to 19. In 1999, the suicide rate among First Nations was 2.1 times higher than the overall Canadian rate. The rate of suicide for Inuit is 11 times higher than the overall rate of the Canadian population.

[Source] [Report Summary, WARNING: PDF]

Canada’s ranking on the Human Development Index, which is used by the United Nations to measure a country’s achievement in health, knowledge, and a decent standard of living is third. Evaluating the living conditions of First Nations, Inuit, and Metis people alone, their ranking is 68th.

My country prides itself on being “better” than the U.S. on issues of race.

Jordan died 800 km from home because he was First Nations. First Nations children in my country are not getting the care they need, the care available to other children, because they are First Nations.

This is not an improvement.

[International Blog Against Racism Week]