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drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences.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!

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

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.

Recommended Reading for October 13, 2009

In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”