Tag Archives: cancer

Recommended Reading for December 14, 2010

K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Recommended Reading for Wednesday, November 24, 2010

Hello Wednesday my old friend. Why I can’t remember that it’s Wednesday until late in the day (at least in my time zone), I will never know.

I was going to link an article about a showcase of artwork by Deaf and Hard-of-Hearing artists, and then when I re-read the article realised the only artist the article highlighted was a person who is neither d/Deaf nor hard of hearing, but wanted to show art in support of the project. I find that a really…. interesting…. way of framing a show that’s supposed to be about highlighting the work of artists with disabilities.

Instead, I’ll point your attention towards a presentation that Deaf photographer Stacy Lawrence gave to the Rochester School for the Deaf.

Katie at Muni Diaries: My Disability on Muni

I get on the train in the Sunset/Parkside district and ride it all the way in. My disability is largely invisible unless I’m barefoot or wearing a skirt that exposes my scar-covered right leg. I get dirty looks from older riders when I don’t get up to allow them a seat; I look like a perfectly healthy 22-year-old woman. I sit in the seat, repeat to myself “you’re handicapped and have a right to sit here” and stare at my foot-and-a-half while clutching my cane with white knuckles.

Jail no place for FASD offenders, ministers told

Citizens with FASD make up only 1% of the Canadian population but account for an estimated 40% to 50% of all prisoners. People born with FASD have difficulty learning new behaviours and controlling behavioural impulses.

Theatre Blog: How captions stopped plays being seen and not heard

Captioning is offered on a regular basis by major subsidised and commercial theatres all over the country. You’ll see “CAP” or “STAGETEXT” in the flyers. Stagetext is the name of a charity that made captioning happen big time. Over the past 10 years they have delivered captioned shows, and trained theatres in how to provide captioning in-house. Captioning has meant a big growth in deaf or hard of hearing theatregoers, for whom theatre is accessible like never before. Stagetext also offers deaf and access awareness training to theatre staff, including front of house staff, to help make a theatre visit more enjoyable and less stressful for deaf people. Clear communication and a friendly face work wonders. It’s great to see deaf and hard of hearing people talking passionately about shows with family and friends, and even daring to say what utter rubbish they’ve just seen.

Minister Responsible for Disability has Inaccessible Office Diane Finley, you are driving me up the wall.

Yes she piloted the Registered Disabilities Saving Plan through Parliament. That helps the children of upper-middle class Canadians save for the time when the parents have passed on. Those lucky few children with disabilities, then adults, face the bleak future of struggling to exist in Canada’s disability wasteland. The program is useless for most Canadians with disabilities who are struggling to survive. Where are they going to find disposable income to save for their childrens’ income?

Canadians with disabilities who can no longer work are subject to the worst conditions of poverty of any group. They form the largest number of people in Canada on social assistance.

The only Federal income program that helps them is the Canada Pension Disability which maxes out at $13,000 annually. Most Canadians on disabilities and CPP are receiving less than $10,000 a year. It doesn’t take an economist to understand survival on $10,000 is punishing poverty.

[Don has a RDSP. Don is also the child of upper-middle class parents. It’s also really really firmly designed with parents of children with disabilities in mind, much like the Registered Education Savings Plans. For example, our bank refused to allow Don to manage his RDSP over the phone, through ebanking, or anything else except in person. The bank building is only “wheelchair accessible” in certain areas, which doesn’t include the areas you need enter in order to manage your RDSP in person. Other banks have different policies, of course, but there’s nothing quite like being told an investment is “for you” when you can’t even get into the building to manage it.]

Mariness: Body scanners and pat downs

With the body scanner, however, you have to be able to stand still. Since I can’t do this without at the very least wobbling and swaying, I now have to do the patdown in my wheelchair.

Smackie the Frog:My TSA Experience

This got me to thinking, though. Am I going to always be subjected to the “enhanced pat down” because of my medical device? I don’t even so much object to the backscatter x-ray machines, and I don’t have any problem with them doing the swab on the device. So I did some research and talked to other people with the insulin pumps who have also flown, and they have had to deal with the same thing I did. One lady was even told by a TSA supervisor that if you have a medical device like an insulin pump, you have to go through the “enhanced pat down”. No choice.

American Coalition of Amputees: ACA calls for Improved Screening Procedures for TSA

“I had just been put in the Plexiglas screening booth,” said Peggy. “My 4-year-old son was made to sit across from me, crying because they would not let him touch me. Everyone was looking at us. Then the TSA agent asked for my prosthetic leg. I knew they could wand my leg, but he insisted on taking it from me. And if that wasn’t humiliating enough, he asked for the liner sock that covers my residual limb, saying I had to give it to him. I felt pressured to give him my liner even though it is critical to keep it sanitary. I was embarrassed to have my residual limb exposed in public.”

There have been several news stories about how the changes in the TSA in the US have affected passengers with disabilities. Here is only a sample, I assure you:

Bladder Cancer Survivor Recounts Humiliating TSA Screening See Also: TSA pat-down leaves traveler covered in urine

Teen says TSA Screener opened sterile equipment, put life in danger

TSA makes Cancer Victim Remove Prosthetic Breast

Recommended Reading for November 2, 2010

Siddharta Mukherjee for the New York Times Magazine: The Cancer Sleeper Cell

In fact, this view of cancer — as tenaciously persistent and able to regenerate after apparently disappearing — has come to occupy the very center of cancer biology. Intriguingly, for some cancers, this regenerative power appears to be driven by a specific cell type lurking within the cancer that is capable of dormancy, growth and infinite regeneration — a cancer “stem cell.”

staticnonsense at Some Assembly Required: The Abstracts of the Mind and the Schizophrenic Metaphor

One of the elements of psychosis is what is called cognitive disorganization, or formal thought disorder. This can lead the brain to think in more abstract forms. This is also where people get the idea that those with schizotypy are artistic, when we may not exactly see ourselves as such. Much like other elements of psychosis, this is heavily impacted by stress levels. Seeing as I was in an abusive relationship at the time, one that amplified all of the symptoms of my mental illnesses, one can imagine that this cognitive disorganization was also amplified.

XLII at Aceldama (Tumblr): Everyone makes me want to puke

no, helen keller jokes aren’t funny. she rose to great prominence and is a role model for all people with similar disabilities. making fun of her is making fun of us and telling us that even if we become powerful, people will just see us for our disabilities and as a joke.

NPFP Guest Poster at Raising My Boychick: Hold This Thread as I Walk Away

People try to joke with me, saying they wish they had that ability like I do. Most of the time I just laugh it off. I don’t expect them to understand. After all, if you’re not there, you can’t experience what’s going on in the world around you, right? It can’t affect you.

Right?

I wish. Unfortunately, it doesn’t work that way.

Joyojeet Pal at Yahoo! Accessibility blog: Disability in the Media: Issues for an Equitable Workplace

The canonical western cinema has followed a few dominant patterns regarding the portrayal of people with disabilities. Characters could typically be pitiable (Coming Home), burdensome (Whose life is it anyway?), sinister (Dr. Strangelove), or unable to live a successful integrated life (Gattaca). The fundamental underlying theme has been the disabled character’s maladjustment or incompatibility in the public sphere, effectively highlighting what we can be referred to as an “otherness” from the non-disabled population.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for August 24, 2010

Wheelchair Dancer: Body Matters, Edges, and Disability

We all experience limitations and restrictions.  Not all of those — like not being able to speak a second language — are disabilities.  The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison.  But it and other similar remarks kept coming up.  In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience.  I’m referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis.  A second example is that feeling sad or disappointed is not the same as the emotion of depression.

Lena at the ch!cktionary: What My Feminist Agenda Looks Like

I reject the argument that feminists can’t fight for women and for poor, queer, disabled, and non-White people. Because guess what? Many women are poor, queer, disabled, and non-White. For them, being part of the latter means many more disadvantages and much more discrimination than just being a woman. A feminist agenda has to recognize that women are not simply all oppressed in the exact same way because they share a gender.

Thea Lim at Racialicious: Sympathy Grifting: The Intersection of Race, Gender, and Fraud

Much of [fraudulent cancer patient Ashley Kirilow’s] success seems attributed to the fact that she easily roused pity with her little lost girl story and her brave smile. Kirilow embodied a version of white womanhood that we want to believe in (or at least we’ve been socially conditioned to embrace it): pretty, plucky, determined, and in need of rescue.

Pam Belluck for the New York Times: Tai Chi Reported to Ease Fibromyalgia

A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

Jane Hughes for the BBC News: New brain scan to diagnose autism

The Medical Research Council study looked at 20 non-autistic adults and 20 adults with Autism Spectrum Disorder (ASD).

They were initially diagnosed using traditional methods, and then given a 15 minute brain MRI scan. The images were reconstructed into 3D and were fed into a computer, which looked for tiny but significant differences.

Recommended Reading for August 17, 2010

Sarah Fenske at the Phoenix New Times: ‘Til Death Do Us Part: They Got Married. Then Everything Changed

This is a love story, albeit one with a medical twist.

Unbeknownst to anyone — including Kevin himself — there was a tumor the size of a Granny Smith apple pressing onto Kevin’s brain.

Kevin didn’t need therapy. He needed surgery.

Patient C: Pain: Attitudes

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els[e] with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Wheelchair Dancer at Feministe: Just Who You Callin’ White

My interlocutor poked me: “Your mama white?” All thoughts of positive interaction slipped beyond my grasp. I knew that we weren’t actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. “Now,” I demanded, “do you think of me as white?”

In FWD-Contributors-Elsewhere news, our own s.e. smith is currently guestblogging at Bitch Magazine’s Social Commentary blog! The series is called Push(back) at the Intersections, and you can read the intro post here. An excerpt:

Feminism has a problematic history. A profound lack of awareness about this history means that we engage in the same dynamics over and over again. For example, the failure of many nondisabled feminists to recognize the history of eugenics in the reproductive rights movement means that it’s hard to understand why disabled feminists feel marginalized by the mainstream feminist and reproductive rights movements. Likewise, a lack of awareness about the history of transphobia in the feminist movement leads many cisgendered feminists to stumble unawares into very loaded conversations.

You can keep up with s.e.’s series of guest posts over at Bitch Magazine!

And finally, my good friend Paolo Sambrano, an amazing artist, performer and writer whom I have known for many years, is looking for funding for his incredible solo show Bi-Poseur, in which he humorously chronicles his experiences with life, death, mental illness, and, in his words, “the quest to write the perfect suicide note.” The show premiered to rave reviews earlier this year, and Paolo is currently attempting to fund a month-long engagement of the show in the San Francisco Bay Area, beginning in September; donations will go toward things like renting theater space, printing programs, marketing the show, hiring a tech person, and more. Here’s some info about the show:

Bi-Poseur [is] a pop-culture encrusted, kinetic look at the intricacies of trying to hang oneself with a Playstation controller, possibly being bi-polar, full scholarships to exclusive Bay Area prep schools, psych wards with twelve year old white supremacists, finally grieving the loss of a parent, motivational speaking, to live tweeting your own funeral. And push-ups. Among other things.

If you’d like to learn more, purchase tickets to the show or make a donation, you can visit Paolo’s Kickstarter page, or his website. I urge you to donate if you can (some neat donation perks are offered at various price points), and go see the show if possible!

The High Price of Industry: Cancer Villages in China

Starting in the 1990s, cancer rates in China began rising at an astounding rate. By 2007, cancer was accounting for one in five deaths in China. Similarly rapid increases in cancer rates are being seen in many other nations that are in the process of industrialising. Once considered a disease of the industrialised world, cancer is a growing problem in many nations that are struggling to gain a foothold in the global economy, as well as nations that are already well positioned, but still rapidly growing, like China.

A lot of news stories like to blame this on the acquisition of ‘Western habits’ and the ‘Western diet,’ or on smoking. These are, after all, convenient and popular targets for blame in the industrialised world as well. Other studies point to increased life expectancy that increases the chance that people will develop cancers simply by nature of living longer.

However, many of these stories ignore a major hidden contributor to rising cancer rates: environmental pollution.

Industrialising countries tend to have extremely high pollution rates. Environmental pollutants like heavy metals in the water have been clearly and substantively linked with cancer in numerous studies. Air, water, and soil pollution have been associated with a wide range of cancers including breast, liver, stomach, and lung cancers. Need evidence of pollution in China? There’s the Asian brown cloud, a proliferation of e-waste in China, and, of course, the pall cast by coal fired power plants, among many other things.

The tendency to attribute rising cancer rates to personal habits is one that places the responsibility for cancer solely on the individual. It’s easy to see why leaning towards ‘habits’ when it comes to attributing cancer rates is appealing, especially for policy makers and corporations, because it dodges the environmental link and any government or corporate-level responsibility. If cancer can be blamed on people, instead of institutions, it eliminates the need to address environmental causes of cancer, like pollutants that sicken people in their own communities, occupational hazards like workplace exposures to chemicals, and pollutants that disseminate and sicken people far from the source.

Regulation of pollution is erratic and sometimes very lax in rapidly industrialising countries, many of which have ‘economic zones’ of some form or another that are specifically designed to attract foreign companies with lax environmental, labour, and tax laws. Historically, people have presented this as some sort of flaw on the part of the populations and policymakers in these nations, implying that people are greedy for the potential profits of industrialisation, or not very knowledgeable about environmental issues, or that they are susceptible to bribery and thus can’t be trusted to make sound policy.

The truth is actually more complicated. Industrialising nations are subjected to immense pressure from industrialised nations to keep their regulations lax and incomplete and to meet demands from multinational companies to create ‘hospitable’ business climates. Many of these industrialised nations are former colonisers, adding another layer to the situation, and many of these corporations take a role in policymaking and governance which might surprise you, like using armed paramilitary forces to silence human rights advocates, Indigenous people, and communities. Many nations with international trade agreements are pressured by corporations that want to cut down on the costs of production by making products in countries with less stringent environmental and labour laws; look at the maquiladoras that line the United States-Mexico border for an example.

We need only look to BP operating in the United States to see how aggressively corporations resist environmental regulations in industrialised nations. In industrialising nations, which are largely regarded as low-hanging fruit for profit, that resistance is magnified, and corporations are much bolder about pressuring nations to refuse to adopt or change environmental regulations and violating those regulations when they are put in place. The same holds true with labour laws; many companies outsource production to nations with less stringent labour regulations to take advantage of the low, low costs of child and slave labour.

China represents a perfect storm. An industrialising nation with environmental regulations that are not keeping pace with pollution and the rise of vast factory towns where companies from all over the world expect to obtain a source of low-cost labour in a lax regulatory environment. Entire villages are sickening and dying as a result of environmental pollution (link via abcsoupspot). Reporting on China’s ‘cancer villages’ is suppressed, and it’s difficult to estimate the full extent of the phenomenon.

What’s happening in China is also happening in communities all over the world. As concerns about pollution rise and regulators tighten up, which they are doing in China, the pollution doesn’t disappear, it just moves. Sources of pollution such as industrial waste dumps and factories don’t just disappear. These things are still ‘needed.’ They simply move to other locations.

Those locations tend to be impoverished communities. Either they are forced on communities that are not given a choice, or they are actively welcomed by communities in dire need of jobs and income. As goes Xinglong, so goes Kettleman City. There is a long and ignominious history of shunting pollution on to poor communities that are the least equipped to deal with it, the least equipped to protest it, and the least likely to have infrastructures in place for early diagnosis and treatment of pollution-related illnesses. Many of these communities also have big minority populations, with environmental racism coming into play when it comes to deciding where polluting industries should be situated.

Environmental pollution is a global human rights issue, not a problem limited to tree huggers. With pollution comes much, much more than loss of biodiversity, extinction of endangered species, destruction of topsoil, and a host of other specifically environmental problems. Death and disease ride with environmental pollution, just as classism and racism perpetuate and determine which communities will be affected by it.

The New York Times Tackles Teens and Cancer

Reader note: I’ve started using my name, ’s.e. smith,’ rather than my pseudonym, ‘meloukhia,’ to identify myself on FWD. I apologise in advance if that causes any confusion! I’m sticking this notice on my posts for a few days to make sure that everyone sees it.

In Cancer Fight, Teens Don’t Fit In,” the headline proclaims. This New York Times article delves into the gaps in cancer treatment for teens in the United States. Teens with cancer tend to be diagnosed later, and can experience radically different treatment outcomes depending on who treats them and where.

Teens forever seem to be stuck in an inbetween place. They are deprived of rights and bodily autonomy until they reach the age of 18. They can be compelled to accept treatments they do not want. They are assumed to be without value by many people in society and their beliefs are discarded and devalued. This is especially evident in medical treatment for teens, who are often treated as though they lack decisionmaking capacity, don’t understand medical information, and can’t be depended upon.

Simone Weinstein, interviewed for the article, talked about how when she first started experiencing symptoms, it was written off. ‘She [her mother] thought I was being a normal, somewhat lazy, silly teenager.’ It turned out that she had acute lymphoblastic leukemia.

Heather Bongiolatti talked about wanting a support group and not fitting in with the pediatric or adult groups: ‘Most of the adults were parents of children with cancer. And the groups for kids were doing drawing and making crafts. I was 15, I didn’t want to do that.’

One thing which I liked about this article is that it actually centred some teen voices, rather than talking about teens, as the media so often seems to do. The Times took the audacious step of thinking that perhaps, if it was writing an article about cancer among teens, it should interview some teens to get their perspective. Of course, a number of adults were interviewed as well, but just seeing the voices of teens at all in this kind of reporting is a big step forward.

Teens aren’t just ignored by the media. Clinical trials focus on adults with cancer or children with cancer, but not teens, who turn out to be a rather unique group. Teens with cancer are less likely to be involved in clinical trials, and surprisingly little is known about some cancers which are primarily seen among teens. For some teens, being trapped in the inbetween place has fatal consequences.

This article is about cancer, something which some people identify as a disability and others do not, but I think it has wider implications for teens in general and disabled teens in particular. That attitude that teens are ‘lazy,’ for example, is used to penalize people who are forced to take partial course loads or to drop out of school because of disability. It’s also paired with the idea that teens can’t be disabled, because they’re ‘too young,’ and that insistent thrusting of teens into the ‘don’t know what’s good for you’ box means that teens are often treated incredibly patronizingly. Disabled teens, for example, may not be provided with access to sexual education.

This particular aspect of the intersection between age and disability is one which is often ignored. This is something we need to remedy, and in order to deconstruct it, we also need to talk about the routine devaluation of teens and their voices. Why should my words be weighted more heavily because there’s not a ‘teen’ in my age? And, a point especially relevant to Internet conversations, why should our valuations of people abruptly shift when we find out that they are teenagers?

For starters, don’t just read me: Go read some progressive teenage bloggers.

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

Iraq: Depleted Uranium, Political Turmoil, and Disability

It is difficult to find demographic statistics on Iraq. The population has experienced considerable upheaval as a direct consequence of the war my government started there, and it was already tremendously unstable before the United States invaded in 2003 with the ostensible goal of “fighting terrorism.” Seven years later, we are still in Iraq, and some very alarming health trends are emerging.

Iraq is littered with pollutants, many of which are a direct consequence of military activity. This includes dioxins from sites where materiel was burned, depleted uranium1 from scores of shells fired in the 1991 Gulf War and during the present Gulf War, remains of chemical and biological weapons which have not been properly contained, and pollution from the burning of oil fields. Who can forget the televised images from 1991 showing Iraq’s oil fields on fire because Saddam was so determined to keep them from falling into our hands?

It was a horrific image, not least because the oilfield burning generated pollution which would be making Iraqis sick decades into the future. The pollution in Iraq is also not limited to its borders, because pollutants know no national boundaries. Pollutants are carried along waterways, in the air, and on vehicles exiting Iraq. In other words, although this post is about Iraq, the issues I am discussing here are highly relevant to Iraq’s neighbors.

Rates of cancers in Iraq are skyrocketing, especially childhood cancers. Women experience breast and bladder cancer at rates which are, again, very difficult to estimate, but are known to be much higher than the norm. Numerous recent reports have also illustrated the incredibly rapid rise of genetic conditions caused by exposure to pollutants. Between 2008 and 2009, doctors in Falluja alone observed “15 times as many chronic deformities in infants.” War also has profound impact on mental health and many Iraqis are in need of mental health services.

It’s worth noting that pollution appears to be concentrated in Iraq’s poorest areas. Iraq’s poor are already at a disadvantaged position, and this has been made worse by exposure to pollutants. Problems like asthma are common among people inhaling harmful smoke, for example, and these problems make it difficult to work and support families. Iraqi women in particular are in a difficult position as they are expected to care for their families, get food on the table, and manage the household, whether or not they are sick. Across Iraq, there are very wide gender disparities when it comes to things like access to education, as well; around 84% of Iraqi men were literate in 2000, for example, in contrast with 64% of Iraqi women.

Meanwhile, numerous Iraqis are experiencing amputations as a result of being involved in bombings, and this includes innocent bystanders as well as Iraqi police and military personnel, and of course insurgents. The United States military does provide services like surgery and some rehabilitation to injured Iraqis brought to our military facilities for treatment, which is excellent, but those services are needed because we are there, and legitimate questions can and should be raised about what kind of long term support we are providing for disabled Iraqis. It should also be noted that getting medical attention from the US military can be dangerous; families with children in our care, for example, have faced reprisals from people who assume that they must be aiding the enemy if their children are being cared for. (Even though treatment is provided in military facilities to all who need it.)

Despite a lot of hunting, I could not find a recent and accurate count of the number of people in Iraq living with disabilities. I know it’s high, and I know that the United States government, which controls many services in Iraq, doesn’t have the greatest record on serving disabled Iraqis. In 2004, for example, Iraq’s only hospital serving people with disabilities was basically left to its own devices. We are trying to administer a country while theoretically supporting it so that it can be independent and also managing a war. It’s not working out very well for us.

Iraq’s infrastructure has been repeatedly torn apart after decades of war. Whether or not you think we should be in Iraq now, whether or not you agree with me politically on what is happening in Iraq and what the United States is doing around the world, the consequences of long term war and military occupation are indisputable. Iraq is in desperate need of rebuilding, and that rebuilding needs to include people with disabilities.

The pollution in Iraq is not, of course, solely the fault of the United States and our allies. Under Saddam, environmental controls were not exactly top notch, and Saddam infamously tested weapons on the Kurdish population of Iraq. Those who survived were often left with long term health problems. Improper containment of Iraqi materiel also led to pollution. But, given the fact that Iraq’s government clearly cannot handle the level of environmental cleanup involved, I think that the global community has a responsibility to provide assistance.

Iraq needs a lot of help. What can you do?

If you are a citizen of a country which is involved in Iraq’s reconstruction, you can make it clear to your representatives that you want to see people with disabilities represented in Iraq, and that you are concerned about the availability of health services to Iraqis. This includes everything from the need for rehabilitation facilities for people who have just been injured to basic sanitation in impoverished areas to prevent the spread of parasitic infections. It is also important to stress that the focus of aid needs to be on empowering Iraqis, not just providing services; instead of putting in new wells, we should be teaching Iraqis to put in wells. Likewise, instead of sending in medical personnel from other countries, we should be supporting training of doctors, nurses, and rehabilitation professionals drawn from Iraq’s own population.

You can also push for environmental cleanup in Iraq, along with the cleanup of unexploded ordinance, which poses a serious hazard. This does not necessarily have to be done by governments; there are also private organizations which could assist with cleanup. The Danish Demining Group, for example, has been active in Iraq since 2003.

You can join people in lobbying for tighter controls on the use and cleanup of depleted uranium. Iraq is not the only region of the world struggling with DU contamination; it’s also a big problem in the Balkans.

Finally, if you’re from a country which sent soldiers to Iraq or currently has troops in Iraq, you can advocate at home for disabled service members. Many people who served in Iraq and Afghanistan are developing health problems as a result of exposure to the same pollutants which are causing health problems for Iraqis.

Writing letters and lobbying can be hard work, and you may not have the energy for it. Just raising awareness by talking about these issues and linking to posts about this is also an important action.

  1. Depleted uranium is a nuclear waste product which is utilized in munitions because it is extremely heavy. It’s used for things like armor-piercing shells, and, guess what, it’s radioactive!

The Sisterhood of the Traveling Pants: A Discussion That Always Happens From Outside

My addiction to YA literature has moved on to another series. I decided to check out Ann Brahsares The Sisterhood of the Traveling Pants. Aside from the fact that I am going to really milk this series for review fodder, I really enjoyed it, for many reasons.

Seldom do I find stories written by women that tell women’s stories that I think get so much right. Here, we have the stories of four young women, Bridget, Carmen, Lena, and Tibby, who have grown up together, and for the first time are going to spend a summer apart. Young women who have grown so much a part of each other and have formed such a tight bond, a sisterhood that forged long before the eponymous pants found their way into Carmen’s closet from the thrift store, must branch out and discover how to be whole women by themselves.

And that is a story that I don’t get to read often in popular young adult fiction.

I fell in love with this book just a little bit… more than a little bit.

Which is why it pains me just a little bit to write what I am going to write.

Three of the four girls goes away from home to stretch her wings in situations that are so poignant that I felt the need to hide my face behind my book and bury my tears in the pages. Of the four of them, Tibby alone remains in Washington, D.C. for the summer, getting a summer job, dreading being home without her friends. During her shift at the department store Tibby begins an at first reluctant relationship with a twelve year old girl named Bailey, who passes out in the middle of the antiperspirant display that Tibby had built. Through a series of events that leads Tibby to Bailey’s bedside both at the hospital and at her home, it is revealed that Bailey has leukemia.

We pretty much know what happens to kids with cancer in books like this.

Bailey serves as a vehicle to help Tibby learn to see past appearances as they make a documentary together, or the “suckumentary” as Tibby likes to call it. First intended to be a slightly mocking film about people Tibby finds somewhat laughable, Bailey conducts interviews that help Tibby see these people for unique and wonderful people, each broken and needy like she herself is. Bailey is, of course, here to teach a Very Special Lesson to Tibby, who will then go on to learn so many wonderful lessons from it that she will pass on to her friends in the form of a message on the Pants.

Because naturally Bailey’s time runs out. Time, that thing that Bailey fears most, calls up on Bailey. And Tibby goes through a long and painful denial that she must call upon the Pants and her friend Carmen to help her overcome.

I must ask: Why do we always read of the story of Cancer Girl from the perspective of the healthy and able bodied outsider? I have read so many stories (My Sister’s Keeper, comes to mind, and although she doesn’t die, I know I have read others where the Kid with Cancer is meant to teach a lesson from outside the perspective), and have yet to find one that tells Bailey’s story. Bailey is brave, and good, and wonderful, and she has much to teach us, but does she not ever depart the world with any wisdom of her own? Is she only here to impart and never receive?

I hate that the Baileys of YA are only ever vehicles and never the main character. I hate that I have to read Bailey’s story from someone else’e eyes. It reminds me that the disabled and chronically ill are to be talked about, but not to. Our stories and lives are teaching tools, but not to be lived or experienced. We are to be silent.

Bailey’s story marred this otherwise exceptional book for me, and yes, I was delighted to also have Bailey be a young woman, another woman’s story, but she was just a window dressing, like Tibby’s guinea pig who also died.

Bailey lives on, though, in the Pants, and in Tibby’s first movie, and in the friendships she forged outside of her sisterhood when she needed to. I just wish that it didn’t take Bailey’s life and story to teach this Very Special Lesson.

Also worth noting, the author uses the word “lame” frequently, although I think it was only for two of the characters, as casual dialogue. It grated on me to no end. I wish it wasn’t so pervasive. This otherwise lovely novel that has strong feminist language and themes was kind of flawed by this.

Thank you, always, to Chally, for recommending this book to me. I am going to be reading the next in the series very soon. It seems that one of the girls deals very seriously with depression, and if this is a continuing theme, perhaps you will hear from me on that one too.