Category Archives: work

Recommended Reading for 24 December, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

The Broken of Britain: The GP’s Story by Dr Jest

So there you have it. Neither Pete nor Dud would have chosen to be where they are now, and neither has asked not to work when they were capable. Indeed both have rather struggled on when reason would have suggested they ought not. And I could name you a dozen others in a similar position. All present talk of making it more profitable to work than rely on benefit may sound very noble and high minded in the marbled halls of power, where hard graft means having a lot to read and a few late meetings to go to. It completely misses the enormous efforts made by the likes of Pete and Dud to keep going against the odds, and any move to impoverish them is little short of scandalous and should be relentlessly pointed out for the evil narrow minded bigotry it is.

Sarah at Cat in a Dog’s World: PWD and TSA

From information I’d heard from TSA administrators, I thought that the body scanners would reducethe need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don’t have any “choice” at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses…there is no “choice.” (And no, for many people, “don’t fly” is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

At Spilt Milk: Thanks for your help, doctor.

Make no mistake: I know that this only happened to me because I am fat. If I were a thin person and I walked through his door with the symptoms I described, he would have been forced to dig deeper. To ask me more questions, to hopefully come up with a wider range of options. Maybe run more tests.

United States: Megan Cottrell at ChicagoNow: Got a disability? You’ll see the difference in your paycheck

A lot of people might assume that if you have a disability, you might not make as much money as someone without a disability. But how much less? How hard is it for people with disabilities in Illinois to get by compared to their neighbors?

India: An unnamed special correspondent at The Hindu: Social barriers keep the disabled away from workforce:

Persons with disabilities are the last identity group to enter the workforce, not because their disability comes in the way of their functioning, but because of social and practical barriers that prevent them from joining work, a study on the ‘Employment Rights of Disabled Women in India’ carried out by the Society for Disability and Rehabilitation of the National Commission for Women (NCW) has said.

Guillermo Contreras at Chron.com: State sued over care for disabled Texans

The federal lawsuit, filed Monday in San Antonio, alleges the state isn’t providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

Lastly, here’s a transcript of a story on Australia’s 7.30 Report program called Setting Sail:

Known as the ‘Everest of sailing’ the Sydney to Hobart race challenges the most seasoned of yachtsmen on what can be a treacherous ocean voyage.

Most of the focus is on the big maxi-yachts competing for line honours. But a unique crew of blind and deaf sailors is also commanding attention.

The charity organisation, Sailors With Disabilities, has been gifted a half-million dollar fast yacht, making them eligible for the first time in the prestigious Rolex Cup.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for 10 December, 2010

Well, if it isn’t Friday again. I suppose it is for you, readers of the future, but I am writing this from Tuesday, in the past! Such is the power of the blog’s scheduling function.

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

An Actor Finds Truth & Power Negotiating her Vision Loss by Marilee Talkington guest posting at Brains of Minerva.

So I decided I wouldn’t tell the directors or anyone on the casting end that I was visually impaired. Which always felt like a betrayal. And I would show up as early as I needed to to re-write the entire script by hand in large print.  I hadn’t learned how to vocally advocate for myself yet in a way that didn’t feel angry or demanding, so at times I flat out lied. I remember calling an audition hotline once using a different name and asked if someone who was visually impaired could get the script ahead of time to memorize.  I was told that they couldn’t because it would pose an unfair advantage over the other actors.

Why CART in Government? by Martha Galindo at CCAC In Action:

1. Good government leads the way for all its citizens by setting best standards for equality and inclusion.

2. To reduce discriminatory gaps which now still exclude many able citizens (who happen to be deaf, deafened, or have a hearing loss, or who need quality text for many other good reasons) from regular and important government meetings, workshops, rallies, advisory committees, and public input to city, state, or federal bodies.

Lene Anderson at The Seated View: Disability Time

So there I am, sitting in the waiting room a full hour and half before my appointment and although I had a book, I was annoyed, so instead I started thinking about Disability Time. You don’t find it mentioned much in Google in the way it’s used in the disability world, but maybe some day, it’ll make its way into search engines. Disability Time refers to the way in which most things take much longer when you have a disability. There is personal Disability Time, as in it probably takes me double the time to make a cup of hot water in the microwave that it would you and then there is the Disability Time that’s imposed by others and there are a couple of those.

Donna Jodham: Out of sight out of mind

A few months ago I had a meeting with some officials of a financial institute to discuss making more financial planning services available to blind and sight impaired persons and at that time I raised the issue of making information available in alternate formats such as Braille, large print, and electronic text. To my chagrin but not to my surprise, the officials admitted that they had never thought of doing so. I also had a similar meeting with a major supermarket chain in Toronto to discuss making their weekly specials more available to their blind and sight impaired customers either online or through a phone service and again, I was told that this had not been thought of up until now.

Claudia Dreyfus for the New York Times: A conversation with Julian L. Seifter, Nephrologist and Patient. It’s an interesting interview with a physician, Dr. Julian Seifter, who just cowrote a book on living with chronic illness.

Q. Has being a patient helped you be a doctor?
A. I’ve certainly learned things I’ve brought back to the clinic. I have a retinopathy, for instance, which can be a complication of diabetes. I don’t have good vision in my right eye, as a result. When this first happened, I said to my ophthalmologist, “I can’t lose vision. I need to read.” And he said, “Any vision is better than no vision.”
That was important. I started thinking, “Concentrate on things you still can do and develop some new things.” I’ve since started gardening, which doesn’t require the most acute vision. It’s something I probably wouldn’t have done otherwise. I counsel my patients to replace what they’ve lost with something new.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for 8 October, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Anna linked to the Australian Broadcasting Corporation’s coverage of this story earlier in the week, now here is Cara’s analysis at The Curvature: Australian Women Report Sexual Abuse in Victoria Psychiatric Wards:

Everyone deserves safety, no matter what their mental health or disability status. But there is an extra responsibility to keep safe those who have been placed in restrictive and vulnerable environments.

stuff to say in class by Amanda Forest Vivian at I’M SOMEWHERE ELSE:

I mean, to me this is common sense and people should already be questioning “non-disabled people>>>>everyone else forever,” but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.

Sorry I’m so inconvenient by Kali at Brilliant Mind Broken Body:

I hate things like this, where it feels like I’m treated as an inconvenience. It’s not like I get some kind of power trip asking for accomodations. I don’t push people around because it’s fun. When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.

Look, I’m sorry I’m so inconvenient. But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.

From the U.S. Equal Employment Opportunity Commission, American Apparel Sued by EEOC for Disability Discrimination:

American Apparel, Inc., a clothing manufacturer which operates what it says is the largest garment factory in the nation, violated federal law when it terminated a disabled garment worker while he was on medical leave for cancer treatment, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed last week.

At the New Zealand Herald: Call to rescue IHC providers rejected:

Health Minister Tony Ryall has ruled out a Government bailout of disability services facing hundreds of millions of dollars debt for backpay arising from an Employment Court ruling.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

John Stossel Wants YOU! To Be Afraid of the ADA

Not being from the US, I had this idea in my head that the Americans with Disabilities Act (ADA) must be awesome. I mean, come on! It’s been 20 years now! Ramps to every building, disability friendly policies, accessible washrooms in every hotel lobby! I get all starry-eyed just thinking about it.

People with disabilities who have actually been in the US are probably either rolling their eyes or giggling at my naivety.

In the last few weeks, I’ve read about airlines being fined for not following the ADA, despite repeated complaints from customers that they hadn’t been, continuing issues with post-secondary education, online content, and accessibility for students who are blind or otherwise vision-impaired (no mention of blind or visually impaired teachers) and students needing to sue in order to get attention to the fact that the new content delivery system was not accessible to them (again, no mention of blind or visually impaired teachers), the Attorney General of Massachusetts needing to step in to demand movie theater chains provide accessible content in all their theaters… The list goes on, while “advocates” tell people with disabilities not to sue because it upsets the non-disabled when they do.

And maybe those “advocates” have a point. Because even though one can find example after example after example of law suits – threatened or actually carried out – before businesses, universities, and even government offices will follow the ADA and “allow” people with disabilities the “rights” they’re guaranteed in the US, some folks still feel the need to produce opinion pieces claiming these lawsuits are frivolous and that the people who take them on are parasites (Content Warning: John Stossel).

Under the ADA, Olson notes, fairness does not mean treating disabled people the same as non-disabled people. Rather it means accommodating them. In other words, the law requires that people be treated unequally.

The law has also unleashed a landslide of lawsuits by “professional litigants” who file a hundred suits at a time. Disabled people visit businesses to look for violations, but instead of simply asking that a violation be corrected, they partner with lawyers who (legally) extort settlement money from the businesses.

Some disabled people have benefited from changes effected by the ADA, but the costs are rarely accounted for. If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare? Extra-wide bathroom stalls that reduce the overall number of toilets are only some of the unaccounted-for costs of the ADA. And since ADA modification requirements are triggered by renovation, the law could actually discourage businesses from making needed renovations as a way of avoiding the expense.

I feel like I’ve taken apart aspects of this argument before, mostly because it seems the arguments get repeated over and over until one wants to make a Bingo Card and be done with it. But, to save me some keystrokes: Let’s Bust Some Myths: People with disabilities just want to sue the world into compliance (there’s a transcript to the video linked there in the comments [1. Back when I wrote this I felt like I was making a very witty point by not “choosing” to be “nice” and putting the transcript up – if you wait for people to be “nice” then you wait a long time! I wouldn’t do that now because I think it’s shitty to make people sit around and wait so I can score some sort of political point.]), Needs Are Not Special and Accommodation is not “Special Treatment” (written by s.e.), Why Being Nice Isn’t Enough (which is meant to address the “just ask for accommodations!” part), “Bad Cripple” – you know, the fakers who are just scamming the incredibly generous disability system for the huge cheques they can rake in – oh, and we’ve got multiple posts just here at FWD about workplace accommodations being treated like a huge drama and a favour that doesn’t need to be granted rather than a right, people who work with actual people with disabilities assuming all people on prescription drugs are dangerous addicts, and how the opposite of disabled is not employable.

I think my favourite bit of the quote above, though, is the “If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare?” I love that sentence, I want to cross stitch it on a little sampler and hang it up on my wall.

A Very Short List Of Businesses You Are Unlikely To See Wheelchair Users In:

1. Ones that don’t have a ramp to allow access to wheelchair users.

Seriously, that’s the basic criteria for shopping in this one-wheelchair-user household. We choose our restaurants, our coffee shops, our bookstores, our yarn stores, our sex toy shops, our grocery stores, our housing, our favourite tea place all on whether or not the shops themselves allow wheelchair users to enter. We don’t even go to one of the malls in the city because half the shops are too crowded to allow wheelchair user, so yes, John Stossel, if your business doesn’t accommodate wheelchair users chances are you don’t have many customers who are wheelchair users.

(Gentle reader, I cannot believe I just typed that sentence 20 years after the ADA passed into law.)

Honestly, that John Stossel is paid actual money to write opinion pieces that amount to “cripples are just sue-happy freaks, the ADA is why the Exxon oil spill happened, and service animals like snakes are ruining it for everyone else” – especially while service animals are constantly being turned away illegally – is especially irritating when we’re still fighting for something as simple as the right to be paid minimum wage for our work.

Recommended Reading for July 6, 2010

jadelennox (DW): How to fight ableism: some easy steps

So I thought it might be valuable to gather together some ways in which able-bodied people can do something about ableism in the world. Then, next time a person is feeling frustrated about ableism, and is thinking about doing some signal boosting of, say, some crappy thing the writers did on the latest episode of Glee, maybe that individual would have the option of committing to spending the same amount of time doing some more concrete fighting of ableism. Not that I’m critiquing the kind of signal boosting that a lot of us do on the blogosphere! But I’m assuming some people would find utility in hearing about other things they could do that might be useful.

Venus Speaks: Between the Lines

Today I realized something: How my disabilities shape the words I do, and more often don’t, say.

For instance: Whenever anyone uses the word “crippled”, I spot it from a mile away. Context doesn’t matter – it could be in anything – a novel, a newspaper article, a headline. “Recession cripples the American economy”, or “The onslaught cripples the meager defenses” or simply “crippling blow”.

Lauren McGuire at Sociological Images: On Disability and the Public Service Announcement [accessibility warning: embedded content lacks transcripts]

Disability-related PSAs cover a wide range of topics, but generally there are three main categories that the message falls into: how people with disabilities are viewed/treated by society, their value in the job market and society, and what their lives are like. Although these are pretty straightforward messages, there is a great deal of variety in the ways in which these basic messages are presented.

Michael Le at Racialicious: An Open Letter to Racebending.com Detractors

It’s easy to draw comparisons between the Airbender casting and an English actor playing an Irish one, or a Spanish actor playing an Italian actor. But it’s not really the same, and the reason is that Hollywood and media don’t consider whether an actor is Irish or Spanish or English. They think of that actor as “white.” The same is not true of actors who are Asian or Latino, who have to fight over the few roles specifically written for those ethnicities. And a lot of times, even when a role is steeped in Asian culture, even when a role is based on real-life individuals of Asian descent, those roles still go to white actors.

Garland Grey at Tiger Beatdown: CRAWLING OUT OF BED: Internalized Ableism and Privilege

In the two years since I have learned things about my own body. I have learned that once my knees start wobbling, GAME OVER. There is no powering through. There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me. This has been a humiliating lesson to learn. But I can still walk. I can still exercise within limits and these limits expand the more I push them. I have also learned how much privilege I carry. I don’t have chronic insomnia like other members of my family. I’ve never lost a job because of being hospitalized, like my friends with Fibromyalgia. If I’m spending time with someone, and I don’t want to have to go into the whole story I can take an anti-inflammatory and ignore the pain, or blame it on fatigue.

Why My Disability Makes Me a Better Employee

As people may have noticed, I’ve been a bit quiet lately, mainly due to being totally snowed in and overwhelmed at work. I’ve had a major project with a hard deadline and have been devoting nearly every waking moment to either working about it or just worrying about it. That worry and constant fretting is directly related to some of my anxiety issues – it’s a worry I feel both mentally and physically, with tensed muscles and clenched stomach and jitters. And I’m convinced that anxiety helps make me a better employee and better at my job.

I am a lawyer and my major project was a hearing with an administrative law judge to determine whether one of my clients will be considered disabled by the Social Security Administration and thus eligible for cash benefits and medical coverage. Our office had been working on this case since his initial application for benefits in 2006 and in the interim, I’d seen him struggle to avoid homelessness while his income disappeared and his medical condition deteriorated without access to effective medical treatment. So this case was an extremely big deal and the outcome would make an enormous difference in the course of his life from this point.

No pressure, right? And it didn’t help that it was an extremely complicated case involving about 15 years of medical records from 10 different medical providers and facilities about three or four distinguishable medical conditions. And that, although his disabilities have extremely serious effects, they were the kind of disabilities that Social Security usually has a hard time understanding and so tend to lead to findings that the individual is not disabled. So – a major case with a lot of difficult work for an extremely important outcome. And the short time between when we were notified of the hearing date and the actual date meant that to succeed, I would need to spend nearly every waking minute in between working on the case.

Which is when my anxiety kicked into high gear – and actually made that possible. I spent all my time in the office reviewing records, teaching myself relevant medical terms and context, and coming up with an overarching narrative to frame the disabilities. But when I would close the file and go home at the end of the day, my anxiety would not let me stop thinking about it. While I was driving, making dinner, in the shower, at the gym, my mind was constantly spinning, either worrying over some aspect of the case or making a list of my next steps when I got back to work. I was not only waking up in the middle of the night to spend some time thinking about the case while staring at the ceiling, I was dreaming about it.

When I’m that anxious about a specific topic or issue, I think of my brain kind of like a rock polisher – it takes a dull idea or problem, with jagged edges, and rolls it over and over and over (and over) again until the edges are worn down and the surface is polished to a brilliant finish that can be appreciated by even the most casual observer. But the end product wouldn’t be the same without the constant, unceasing motion and effort. If the motion, the tumbling, stopped for stretches of time, the end result would not be as smooth, as shiny, as easily appreciated.

My anxiety makes it impossible for me to slack off while working on such a major project. Even when I try – by watching tv, reading a book, talking to my cat – there’s a portion of my brain that keeps spinning and spinning away, and my whole body is ordering me to pay attention to that part of my brain. Yoga wouldn’t help, hot baths didn’t work, even a hard session on the treadmill just made me more tense. The only thing that would reduce the anxiety was making some progress on the case.

I think that drive makes me a better employee and results in better and more persuasive case work. I certainly know that I would love to take breaks and put work out of my mind and to not dream about it every night. But I don’t think the end product would be as good if I were able to do that. So my employer never needs to worry about me blowing off a case or putting less that my full effort into it, because of the anxiety that will not permit me to do anything less.

(By the way, we won the case and my client will get his benefits. Yay!)

There are definitely other aspects of my disability that either aren’t relevant to or actually make it more difficult to do my work, and I don’t want to imply that everyone who is a lawyer should have anxiety to make them more effective. But this particular aspect of my disability definitely enhances my ability to focus and concentrate and motivates me to put in lots of time and thought, which is an advantage for my job.

Are there aspects of your disability that enhance ro amplify your abilities in certain areas?

Kids these days! The “Generation Y” panic, privilege, and erasure

Recently, I read this odd article, penned by Judith Warner, in the New York Times–one in a stream of many that detail how excessively awful the current generation of young people (read: young workers) is at putting its collective nose to the grindstone, sucking it up, and generally not acting like a bunch of brats, or something.

Many of us have heard about, or come into contact with, some of these bright young things. They are heralded — or, more commonly, blasted — as naive, entitled, too optimistic, and over-confident. In many of these articles, their numerous faults are listed: They don’t know how to dress professionally! They expect to march into the workplace of their choice and immediately start making a six figure-salary! They think they are perfect! They want praise all of the time! (Does no one who writes these sorts of articles stop to consider that many human beings want praise when they complete a task to the best of their abilities?) They have tattoos, dyed hair, and iPods! EVERYBODY PANIC, because the American workplace is apparently going to be dragged down by Generation Y’s entitlement, narcissism and laziness! This narrative, however, seems to apply mostly to a very specific subset of the population (and even the picture that accompanies the NYT article reinforces this): young, able-bodied, middle to upper-middle class, college-educated white people.

This erases, or conveniently ignores, a hell of a lot of folks who are not young, abled, middle/upper-middle class, and white. It erases young workers who may not have had the “expected” educational opportunities (such as college), or who had to take more than the expected four years to finish their degree, or who did not finish school. It erases people whose parents or family members may not have been quite so “involved” in their education, or in their lives at all. Of course, it also erases young people with disabilities — both those who cannot work, and those who want to work but who may be bumping up against various narratives such as that of the “entitled” Generation Y kid. Some of us have psychological issues or disabilities that put us completely at odds with the “overly-confident” and “entitled” stereotype that apparently befits the current generation — because we cannot stop worrying despite the fact that we are supposed to be totally optimistic and confident all of the time, always thinking that the roads leading to our perfect job will be lined with rainbows, fluffy bunnies, and gold.

Some of us have physical disabilities, chronic pain, or chronic illnesses that prevent us from working 40-hour weeks (or more); asking for accommodations or disclosing our condition(s), we fear, may make us look “entitled,” or like we do not want to put in the time necessary to work our way up — even if this is not the case. The fact is that many people, and many young people, with disabilities are already at a tremendous disadvantage when it comes to the labor market and making a living. Not only are many people with disabilities, at least in the U.S., more likely to face lengthy stretches of unemployment and/or live in poverty regardless of age, but many face additional hostility, discrimination, and unreasonable demands, both in the workplace and from society at large because of their disabilities.

While I am not saying that these over-entitled Generation Y-ers don’t exist (I’ve had run-ins with quite a few of them, myself), I am struck by the fact that the narrative surrounding them is so dependent upon erasing or ignoring certain people whose bodies and experiences do not fit the “expected” attitudes about labor that have been traditionally upheld by American culture. Many of these attitudes, furthermore, rely heavily on binaries that reinforce who “counts” and who does not: You either work full-time, or you’re lazy. You’re willing to be mistreated in the workplace and do whatever it takes “for the job,” or you’re a wimp. Suck it up, or go home. If you’re not making enough money to live on or are poor, you just aren’t working hard enough. If you ask for “accommodations,” you’re asking for too much — just do your job! You have to work hard to “make it,” and if you don’t work hard enough, it’s your fault. If you don’t like your job or face daily mistreatment, you can always quit and find another one, right? But if you can’t, it’s your fault, and why did you quit that job, anyway? These attitudes surrounding work affect people with disabilities in a wide variety of age groups and generational cohorts, and this is a crucial part of why they are so important to critically question and examine.

The message for Generation Y, in general, may be “Get over yourself,” but the message for those who do not fit the characteristics of the “average” Generation Y worker is more severe — and ultimately more dire.

[Cross-posted at ham blog]

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

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

Eugenia: Siempre eqivocada

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

meowser: BADD 2010: The Total Erasure of Partial Disability

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

Jha: My Invisible Disability

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

Latoya: Open Thread: Science, Conclusions, and Assumptions

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

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

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

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

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

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!