Category Archives: medical practice

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.

Training is Important

When I hear people joke about cutting and self harm, I often shake my head with amazement at how little they seem to understand that behavior. I’ve always kind of assumed that if someone went to a hospital seeking help for their own self harm, they’d find people who were better informed and better equipped to help them. Well, according to the results of a recent survey of National Health Service professionals in the UK, that’s not the case:

Less than half of NHS professionals believe they or their team have had sufficient training to undertake assessments of people who self-harm, according to research by the Royal College of Psychiatrists. The College asked more than 1,500 of its members whether they felt they had adequate training and less than half of respondents felt their training was insufficient to carry out assessments… 26% of staff felt that they did not know about self-harm to communicate effectively (59% of staff in the emergency department).

As one of the members of the working group involved in the survey and report points out, this is a serious problem: “When a person turns up to hospital having harmed themselves, this may well be the first time they have had contact with the health service. Failure to deal effectively with a person at this stage can have major repercussions. It may discourage them from returning in a later crisis and stop them getting the care they need.” It’s also a problem because the general stigma against people who self harm goes unchecked: “large numbers of healthcare staff have a profoundly negative reaction to patients who harm themselves, compared with those with physical illness, and … this is likely to be reflected in the quality of clinical care.”

Not only is this problem serious, it’s also pervasive, as the report estimates that 4 in 1,000 people in the UK self harm, resulting in 170,000 people presenting themselves at hospitals for help with self harm every year. And of course, members of some groups are more vulnerable than others, including asylum seekers, minority ethnic groups, prisoners, QUILTBAG people, and veterans. Young people are also more likely to engage in self harm. And these people are not getting the help they need, the help they deserve.

(You can download the full report here.)

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. Extremely relevant to this disabled actor’s interests, and a pretty wonderful piece in any case.

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.

5 Ridiculous Big Pharma ads

I have an ongoing peeve that relates to medication and social attitudes surrounding it: often, for some people on various sides of the political spectrum, trashing Big Pharma translates into trashing people who use prescription medications at all, for a variety of health conditions — especially for chronic conditions, both of the mental health and physical varieties. As a woman with multiple disabilities — a few of which require me to be on medications manufactured by Big Pharma (OOOOOH, SCARY) — I am not, how shall I put it, too excited about this. It’s really nice that stereotypical Extremely Naive Hippie Liberals and Rugged, Anti-Government Bootstrapping Conservatives can, theoretically, bond over how much they mutually hate those of us who take medications for legitimate medical reasons — but even those of us who, normally, would like and/or encourage all of this talk about “building alliances across the [political] aisle” have limits.

In short, there are a lot of things for which you can take Big Pharma to task without also treating the people who depend on these medications like total shit. One of these things is advertising and direct-to-consumer marketing, at which Big Pharma seems to be really quite good! And by “good,” I mean totally ridiculous. Let’s take a look at five different ad campaigns that should never have left a pitch meeting, much less been made with gargantuan budgets, professional actors, and voice-overs that calmly inform the viewer/listener of possible side effects.

5. Cialis: Yes, the one with the make-out music in the background and the couple sitting side-by-side in the bathtubs out in a meadow or something. Why is it so difficult for these folks to find a tub big enough to fit them both?

4. Uloric: Granted, this one may not be as ridiculous as some of the others on this list, but the visual of a dude carrying around a giant beaker of green liquid (which looks suspiciously like it should be in some sort of fancy alcoholic drink that costs upwards of $7) is pretty bizarre, as is the voice-over that helpfully informs viewers that side-effects may include flare-ups of the very condition that Uloric is used to treat. This might be the entire point of the ad, though; since Uloric is a medication intended to help with Gout symptoms, wouldn’t it be more accurate to have the guy wear shoes to which giant beakers are attached? Perhaps we could see a live-action depiction of the 16th-century drawing included in the Wikipedia article on Gout, instead of a guy with a big beaker of neon-green energy drink? That would be awesome, and might get the Gout-is-horribly-painful-and-this-medication-could-help message across in a way that actually makes sense.

3. Lyrica: Every time I see this one, I want to yell at the TV, particularly when the one featuring the classy middle-aged lady who bakes bread has somehow made its hellish way into my precious rerun of Dirty Jobs or another show that I don’t like to admit to enjoying. The actress in this ad pronounces “Fibromyalgia” like it’s a seasonal root vegetable or something (like “FYE-bro-MY-al-GEE-AH”) and all I can do is give the television my most hateful death glare. Oh, and even better is when she says that “My doctor diagnosed it as FYE-bro-MY-al-GEE-AH muscle pain,” and I want to scream, “Lady, IF YOU KNEW what fibro was actually like, you would not be saying that. You would probably be in too much pain on some days to do very much.” Or baking loaves of crusty bread en masse, for that matter. As someone who’s dealt with fibro for the past few years of my life, I only wish I had enough energy to bake many loaves of bread, like the woman in this commercial. Sweet, delicious carbs might help my pain, or at least give me something to focus on other than constant pain and fatigue.

2. Cymbalta: My personal favorite moment is when a kid runs up to hug the woman (presumably a relative?) and the camera focuses on her face, and she just looks so sad that the explanation just has to be terrible acting (or depression, according to the good folks at Eli Lilly). Depression’s symptoms are much, much more complex than walking around looking like the emoticon for sadface [🙁], but you wouldn’t know it by watching this commercial. I think someone should make a parody of ads like this, except that some other person approaches the woman, tells her to “Snap out of it,” and then the woman gives that person the finger–or, more accurately, gives them the 😐 face, because that is what certain aspects of depression make you feel like doing. You’re not only sad all of the time, but often you feel too hopeless to respond to people’s asshattery when they feel the need to comment on your depression and/or tell you that you Just Need To Buck Up.

1. Viagra (“Viva Viagra” spot): Truly the stuff of nightmares. The first time I saw this ad, I was awake at 3 or 4 AM due to pain (go figure, right?) and thought I was hallucinating when the opening chords of “Viva Las Vegas” started up in the opening seconds of this ad. I was, at first, confused as to what that particular song had to do with a medication used to treat erectile dysfunction. And then four middle-aged dudes–one playing a guitar–appeared on the screen and started to sing “VIVA VIAGRA!” to the tune of a song that most people associate with Elvis Presley, or any buddy comedy that has some sort of drunken Vegas montage. If you’re sure that this one won’t give you nightmares, I urge you to find it on YouTube, because it must be seen to be believed. Unfortunately, it’s been replaced in recent months with 30 seconds of yet another middle-aged white dude driving a car around in the dark. The penis = car association makes more sense than hanging out with your best buds and singing about Viagra, I suppose, particularly if you know anything about psychoanalysis.

Readers, what are your least favorite Big Pharma ads, and why? Short descriptions (and links to videos, if you have them) can be helpful for people who may have not seen the ads; please include them, if possible, so that we may all share in the unintentional hilarity.

No, Not Even the ‘Small Things’ are Okay

I live in a small town, which is something I both love and hate, at varying times. (Ask me how I feel about it this time tomorrow.) One of the consequences of living in a small town is that everyone knows everyone else’s business, or thinks they do, which can amount to the same thing. If you’re, say, disabled and queer, a lot of people will talk about that because they think that’s okay to do, and a variety of colourful and entertaining rumours will circulate as a result.

One thing people around me seem to think is really bizarre is my desire for privacy. I ask that people not talk about my disabilities or my general health with other people, and this is rarely respected. Thus, I hear through circuitous ways about the strange things are people are saying about me, because in the small town game of telephone, someone mentioning that I looked peaked in Harvest Market on Friday will turn into me being taken into the ER in convulsions by Sunday night. You can imagine what happens when people have actual medical information about me.

What people usually say when I say ‘hey, I would really prefer that you not disclose information about my disabilities or my health to third parties’ is ‘oh, but it was just a small thing.’

Except that there is no such thing as a ‘small thing.’ People who know what medications I’m on, for example, could look those medications up and find out what conditions they are commonly used to treat. Thus, someone saying ‘oh, I saw s.e. at the pharmacy the other day picking up some [prescription drug]’ is not disclosing a small thing. That person could be providing highly compromising information, actually, because once people go home and look it up, they encounter a lot of misinformation and they map that over to me. Maybe I’m not even taking the drug for the reasons they find on WebMD, but they’ll decide I have [disorder] without talking to me or asking me for any information (probably in awareness that if I haven’t told them, there’s a reason for it) and since there’s a lot of stigma about it, they’re not going to view me the same way. They won’t interact with me like they used to. They will think I’m unreliable and untrustworthy. Despite years of evidence contradicting these beliefs, that’s how they will start thinking of me.

People in small towns squirrel away information and they revel in having secrets that can be teased out of them. How often do I have conversations with people where they talk about other people and they say ‘well, you know, ever since the diagnosis, she hasn’t been the same’? What they want me to say is ‘ooooh, what diagnosis?!’ Or they want me to say ‘oh yes, I know, she has cancer, it’s so sad.’ What they don’t expect is ‘I’m not really comfortable talking about that when she’s not around, can we talk about something else, please?’ I don’t play the game of secrets and this tends to make me rather unpopular, because I’m not interested in using information about other people as a tool for entertainment, amusement, or simple social advancement.

In a small town, there is no such thing as a small thing. Not when everyone knows each other, not when identifying details are pretty easy to figure out. If a doctor mentions treating a patient with a distinctive tattoo or an unusual name, everyone’s going to know who that person is. The doctor doesn’t have to say ‘I’m treating John Q. Public’ for people to know. Most care practitioners up here are aware of that and they are really careful when it comes to protecting the privacy of their patients, but the same doesn’t extend to people who are not doctors, who can gossip freely amongst each other.

I hear the strangest stories about people, the result of compilations of ‘small things.’ Many of these stories I know to be patently untrue and others are unverifiable unless I talk to the person, which I usually don’t want to do because I often don’t know the person very well and also because if that person hasn’t volunteered this information, it’s not my business. In some cases, very rarely, they are true, but I’m still not interested in discussing them, because, again, not my business. People seem absolutely astounded when I suggest that they stop spreading rumours about people or when I say that I’d really prefer that they not discuss personal medical information involving anyone other than them.

I’ve had people tell me I ‘obviously don’t care about [person]’ for asking them to stop talking about that person’s disabilities or medical conditions. For suggesting that, rather than speculating on the ‘small things’ and what they could mean, breaching privacy, faith, and trust with their supposed ‘friends,’ they shut up.

Language Interpretation and Health Care

As promised, here is a post and a place to discuss policies and procedures about language interpreting in a health care context. Unfortunately, it is going to be a slap dash post as I’m knee deep in a number of things, both professional and personal, including preparing to clean ALL THE THINGS and cook a great number of the things for the upcoming U.S. Thanksgiving.

So. Here are some assorted thoughts and resources on interpretation policy!

My first and most prominent thought is the absolute importance of having interpretation done well. It is essential that the health care provider be able to understand the patient’s reported symptoms and experiences and sensations, their medical history, their concerns, and their desires and goals for the medical treatment or care. It is also essential that the patient be able to understand the instructions and questions of the provider and discuss any potential treatment options, including tests, medications, and therapies. Without accurate and competent translation, the provider cannot understand what is wrong and the patient cannot understand how it will be addressed. While there are times that medical treatment takes place without communication – primarily emergency situations when the patient is unconscious – that is definitely the exception rather than the rule and is not a good model for non-emergency care or even most emergency care. Communication is crucial and should be important to all individuals involved in health care transactions. In other words, bad communication could kill people.  So, this is an enormously important issue, both to people who do not speak English (or whatever the predominant language is where they are) and to people with hearing impairments and d/Deaf people.

Problems with interpretation:

In my experience, there is usually a vast gulf between interpretation policies as written and as implemented in practice. Even when a policy requires use of a trained and certified interpreter during all interactions, with clear instructions on when and how to obtain an interpreter, there will be interactions where no interpreter is present. (See, for example, this recent audit of interpreter use by New York City police finding that officers routinely failed to comply with the existing interpretation policy.) This is in large part because of logistical difficulties with interpreter use that I’ll discuss below and seems to be a feature of nearly every interpreter policy. This kind of built in failure rate makes me inherently nervous about relying on interpreters.

Interpreter policies are logistical nightmares, in large part due to the difficulty of matching language competence to language need that we discussed last week. This is especially true in areas with significant language variation – the court where I worked had several Spanish interpreters and an Armenian, Russian, Farsi, Cantonese, and Tagalog interpreter on call all the time, and still had incidents when a litigant needed interpretation in a language that wasn’t available. This is even more difficult in an emergency room situation, when it is impossible to anticipate when a need will arise and there is no way to just have everyone wait for a bit until an interpreter gets there. This leads to using interpreter phones – where the provider and patient use a handset to speak to an off-site interpreter, which are both expensive and clunky. Even if an interpreter is on staff, finding them in the building, pulling them out of a meeting or their break, and getting them to the desired location to provide interpretation is often a hassle.

There also needs to be an entire infrastructure around training interpreters and measuring and certifying their competence. Language knowledge is not enough for competent interpretation, interpreters must also be trained in interpretation skills and professional standards. There is a lot to well-done interpretation – positioning yourself so the provider and patient can maintain eye contact, knowing when and how to ask clarifying questions, providing concurrent interpretation without interrupting the flow of the conversation. This training and certification requires time and money.

The limited-English-proficient patient has very limited ability to address problems in interpretation policy. To address the failure to provide an interpreter at all, they can provide their own, usually by bringing a friend or family member to do the interpretation. This is a big problem for a number of reasons. First, there’s no way to know the competency of the friend or family member in interpreting, especially with specialized medical vocabulary and concepts. When the doctor tells me that the leg pain I am experiencing could be a rupture of my plantaris tendon, plantar fascitis, or tendonapathy, is there any probability that my sister will be able to interpret that accurately? (Personally, I’d have trouble identifying even what portion of the leg was being discussed if I didn’t have Medline open to get those terms in the first place.)  Second, this is a major confidentiality issue. If I am going to the doctor to discuss genital warts, I am unlikely to be as frank or forthcoming if my brother is my interpreter. This is especially true for medical issues around sexuality, pregnancy, mental health, and injuries from domestic violence, when discussing symptoms and experiences can open the patient to strong stigma effects. This is even more problematic if a child is serving as an interpreter and being expected to interpret discussion about conflicts between his parents or his mother’s suicidal thoughts, which could be dangerous or traumatic for the child.

Overall, I am most concerned about the inherent non-compliance caused by the logistical hassle and the patient’s agency being limited to bringing a friend or family member to interpret, and it is these issues that make me prefer language proficient medical professionals rather than reliance on interpreters. I also think that language proficiency for providers would help with cultural competence issues, but that’s more a side effect.

So – have at it! Interpretation? Language proficient providers? What makes sense? What do we want?

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Recommended Reading for 17 September, 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?

From BBC’s Ouch, by Charlie Swinbourne, Deaf country life v deaf city life:

I’m soon to become a Dad for the second time, so we’ve started thinking about the long term, and where we want our children to grow up. With houses on the pricey side for anything bigger than a shed in our area of West London, we’re currently wondering whether we’d be better off bringing up a family outside the city. […] The capital is full of opportunities for deaf people, with weekly deaf pub meets, regular events, accessible cinema and theatre performances, and numerous deaf centres and sports clubs.

Badgermama presents Kids and wheelchair manners:

Please stop yelling at your kids just because they’re 20 feet away from a wheelchair! Nothing bad is going to happen. It really pisses me off when someone grabs their kid, yanks them “out of the way” and yells at them, just because I’m in the same grocery aisle or on the same sidewalk. Usually, the kids are nowhere near me. All these people are doing is teaching their children that people in wheelchairs are scary and weird.

Some good news from ysobel of i hear the voices when I’m dreaming in *sags in relief*:

So, there’s been this whole saga with trying to get a ramp to the front entrance of our church, made vastly overcomplicated by the fact that the church is a designated historical site blah blah blah. […] The church appealed to the city council, who had it on the agenda for tonight, after several postponements on their part.

Leah at Cromulent Words writes You Can’t See My Pain:

You don’t see me not talking about disability in class because I’m fraid of being silenced again. You see someone who doesn’t care about the assignment.

At random babble…, our own OYD writes Medical Autonomy Chronicles: The Virgin Pap Smear (do be warned, it’s graphic):

For all the talk of how having sex outside of marriage or whatever message had been pounded on me for however long, and how it would leave me hollow and leave me feeling worthless and damaged, and for all the ways I had been told that casual sex would leave me reeling and feeling depressed and with a hole of missing self-esteem, nothing I did in my consensual sex life has ever compared to the way that pelvic exam and pap smear felt to me, a fourteen year old girl. A person rising on the crest of womanhood, not yet there but ready to fly, and having had myself violated before I took my first steps.

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

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

Pap smears, fat-shaming, and the lithotomy trap

[X-posted at Hoyden About Town]

So I’m sitting watching the evening news, and on comes a chap telling us women and girls that we oughtta go and get more Pap smears. Then on comes a woman to talk about how Pap screening rates are going down in young women, and to speculate about possible causes for this. The cervical cancer vaccine comes up, as does the “awkwardness” of the test, and our inappropriate embarrassment, which we apparently need to get over.

What I don’t hear addressed in the mainstream media in these discussions of Pap screening? Well, lots of things, like heterosexism, and ignorance about Pap age/sexual experience guidelines, and sexual assault (inside and outside the medical system). However, the one that really stood out in my mind today is also a factor that isn’t going to be fixed by lecturing women. Fatphobic abuse in the medical system.

There has been a fair bit of talk around the feminist traps about some of the other factors, especially the aftermath of sexual assault and its effects on medical interactions. I’m not going to go into that in this post, but it’s a huge, huge issue. What I would like to talk about for a moment, not because it’s more important but just because I have a first-person anecdote, is medical fatphobia.

We know fatphobia kills. In all sorts of ways, in all sorts of settings. And one way in which it can kill is the horrendous tendency of doctors – quite a few doctors, from the stories I hear around the place – to trap women and girls on their backs so that they can shame them while they’re vulnerable. And what they don’t realise, or don’t care about, is just how long-lasting the effects of this can be – and not in a good way.

Medical education materials abound with motherhood statements about ‘Preventive Medicine’ and ‘Lifestyle Intervention’ and ‘Opportunistic Behavioural Education’. General practitioners are exhorted, over and over again, to take any and all opportunities they can to tell people they’re fat. Really, over and over. And OVER. And doctors, labouring under the mistaken impression that this will cause said people to magically become skinny and therefore ‘healthy’, go ahead and do it, then smugly boast about it between themselves, sighing about how no-one ever listens to them. Or, perhaps, under the impression that they can then self-satisfiedly sit back and tick a box on the chart about how they’ve engaged in initial Lifestyle Education, which they learned all about at the last Lap-Band seminar.

Medical education is a powerful, powerful matrix of fat hate, based on the twin premises that telling people they’re fat is (a) helpful and (b) harmless.

So let’s talk about how that plays out in practice:

When I was 19, I had a Pap smear. It was my first. I went to the nearest available doctor, who worked in a setting where they dealt with a late of people in late adolescence and early adulthood. I wasn’t particularly concerned about it; a very little vague unease at the unknown, but no particular trepidation. I didn’t bother taking anyone with me, and I just booked the appointment in between other things I had to do, like med school classes and whatnot. And off I went.

I got my Pill script, had my BP taken, then assumed the position. And the doctor came up into his position, as they do, then stopped.

He looked at my thigh. “Not quite the right spot,” I thought, “but hey, he probably knows what I’m doing more than I do.”

Then he touched my thigh. Around the middle, underneath (in lithotomy position).

Then he JIGGLED IT.

He jiggled my thigh.

And then he grimaced.

And then he did the Pap smear. I was frozen, completely unable (by my inexperience, position, and by general medical disempowerment) to say anything.

And then I fled.

Was I ‘traumatised’? I didn’t have nightmares. I went and got my next Pap smear dutifully, largely because I really didn’t have any choice – no Pap smear, no Pill script. (Ask me about contraceptive hostage-taking! You know you want to!)

But every time I get a Pap smear, every single time, even now more than twenty years later, I see his face. I see him jiggling my thigh with that look of disgust. Every time I lie down and spread my legs for the speculum, I am reminded of exactly how repugnant my body is.

My first impulse is to tell you exactly how fat I wasn’t, back then. To tell you that it wasn’t ok for him to do that because I was physically fit at the time. To tell you at length about how my aerobic capacity was at the 95th centile, that I could do a hundred pushups, that I could swim a k without stopping, that I was beating my fit male friends at squash, that I was getting State medals in my chosen sport. But that’s all irrelevant – because fat-shaming isn’t ok for people who are actually fat any more than it’s ok for people who aren’t. Fat-shaming doesn’t get a pass when it’s limited to people as fat as I am now, or twice as fat as me, or whatever. Fat-shaming isn’t bad because it’s directed at inbetweenies as well as at fat people. Fat-shaming is harmful for EVERYONE. Fat-shaming is not.ok.

As long as some doctors keep seeing lithotomy position as a prime opportunity to ladle on the shame, girls and women are going to avoid Pap smears. So hey, ball’s in your court, medical profession. Fix it. Get your own house in order, and meanwhile, stop telling US we’re the ones doing it wrong.