Category Archives: blaming

Healthy Obligations

Even the President of the United States, it appears, is not free of an obligation to be healthy. Society is even conveniently provided with the means of policing him, in the form of ample news stories about his latest physical. The Guardian had three stories up about it at the same time! A British paper, I would add! I don’t think any American papers cover the Queen’s health in such exhaustive detail.

A quick perusal of front pages and “health” sections at some major newspapers netted (warnings on all of these links for health/food policing, sizeism, ableism, don’t read the comments, &tc.):

Barack Obama’s medical: how does he compare to the rest of us?

Cigarettes and alcohol and Obama

Give the guy a cigarette break

Obama in excellent health, doctor says, but he should quit smoking

Obama’s other health downfall — pie

Desserts to Blame for Obama’s Higher Cholesterol

Spoonfuls of Southern Cooking for Obama

What’s interesting and horrific about all of these stories is that they go well beyond “the President had a physical and was pronounced fit for duty.” They provide explicit and detailed medical information about medications, injuries, his blood pressure and pulse, and recommendations made by his doctor.

Apparently HIPAA does not apply to Presidents.

And apparently Presidents are subject to the health police just like the rest of us. The President should eat less pie! The President should quit smoking! The President should use a different exercise routine! The President should be mocked for eating arugula! All of these things are repeated, with varying degrees of force, in the news articles about his physical. Indeed, many of those articles are being used by their authors to launch little screeds on their own agendas (anti-pie, anti-smoking, exercise prescriptionism, anti-arugula). In the eyes of the media, evidently, the President’s health is not just an object of public consumption, it is a teachable moment packed with moral object lessons.

Here’s what I think about the President’s health: It’s not my business, except in some very special circumstances.

I assume that if the President does have health concerns, he can deal with them privately, and he has the right to do so. I would certainly never dictate what he should or should not do because I am not the President. I am not living in his body. I don’t know what kind of needs his body has, and can’t presume to imagine that I do know. His medical appointments are his own affair. His nutrition is his business. His medications are a personal matter.

There are certain situations in which the President’s health would become a matter of concern to me. If, for example, he was in a coma, that would be something I would like to know, because I have worries about the continuity of government. If something was temporarily preventing him from making sound decisions, I would prefer that he not be holding the nuclear football, but I don’t particularly need to know what might be impairing his judgment. Indeed, I don’t even need to know why other people are temporarily taking over Presidential duties; I just need to know that things are being handled appropriately.

I do not need to know President Obama’s blood pressure. I don’t need to know his cholesterol levels. I don’t need to know about what medications he takes, where his sports injuries are, what he eats and when, or even how tall he is. None of this information is relevant to being the President of the United States.

And all of these reports salivating over the details of the President’s medical record fill me with new awe that FDR managed to conceal many of the aspects of his disability. A different era, indeed.

Given the fact that not only the US media but the international media is covering the results of the Presidential physical in such graphic detail, I am curious to know if readers in other countries have noticed similar trends in terms of mediasplosions over the health of their heads of state1. Is it unusual to see such coverage, or par for the course?

  1. It’s not just heads of state here who are subject to such intense scrutiny, of course; here in California, Senator Pat Wiggins has been mercilessly pursued by the media over her health issues. This includes rampant speculation about the kinds of medical issues she might be experiencing and whether or not she is able to serve as a Senator.

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

For Cereal, Jessica at Jezebel? PTSD after obstetric assault is “hysterical”?

[WARNING: descriptions of obstetric rape and PTSD]

At Jezebel, Jessica writes: Is Having A Baby A Traumatic Event?

A new survey says that 9% of postpartum women suffer from post traumatic stress disorder. You know, the same disorder that Iraq vets and plane crash survivors get. Something does not compute here,[…]

Have we become so precious and hyper-conscious that something women have been doing for time immemorial is now ranked alongside war as a painful event?[…]

Certainly, having a bowling ball of a baby shooting out your vag isn’t a picnic for anyone, but the hysteria surrounding something so matter-of-fact is troubling.

“Hysteria”. Yes, “hysteria”. She went there. She used the prime misogynist slam against women, blaming wandering uteruses. Unbefuckingllievable.

I’m only surprised there wasn’t a “princess” or a “delicate flower” thrown in there too. Or maybe a few accusations of insurance fraud, hm? That would just put the icing on the hateful cake.

Get back to me when you’ve been stripped, dehumanised, isolated, forcibly starved, and strapped to a table for 12 or more hours during the hardest work of your life. Get back to me when you’ve been subjected to a series of non-emergency procedures on your body with neither consent nor medical justification. Get back to me when you’ve been imprisoned in hospital.

Get back to me when you’ve been held down by two or three people while someone – or more than one someone – pushes their fingers into your vagina while you say “No”. Get back to me when you’ve been screaming “NOOOO! STOP!!!” and been ignored while someone cuts your body open and shoves metal forceps into you. Get back to me when you’ve been strapped to a table and operated on and had your protestations about the anaesthetic not working being ignored. Get back to me when you’re left bleeding and vomiting on a table, without access to help, wondering if you’re bleeding to death, and you’ve had your newborn baby taken away from you without explanation or good reason except an over-the-shoulder “we don’t have enough staff right now”.

Get back to me when you’ve spent months of your life – the months you thought would be a joyful, perhaps sleep-deprived, milky daze – having violent flashbacks and nightmares. Shambling through the day barely able to function, unable to bond with your newborn. Bursting into tears and panic attacks many times a day. Avoiding public places lest you suddenly start sobbing and need to run. Not able to have anyone touch you.

Get back to me when you’re hunched in a corner, unable to work, unable to care for yourself, unable to speak, and all anyone can say to you is “All that matters is a live baby”.

I hope you never experience these things. Because they can be horrifying, life-changing, deeply traumatic events. The only promise I can make you is that I won’t call you “precious” or “hysterical” if you’re ever in this terrible position.

Medical assault is assault. Obstetric rape is rape. Trauma is trauma. Some people who have experienced these things get PTSD.

And it’s not up to you, or anyone else, to instruct them that they haven’t – especially in explicitly woman-hating terms.

You don’t get to judge.

No, no, no, no, no.

What is the Real Goal of Fraud Investigations?

California is in the midst of a major budget crisis. The past year has seen immense and drastic cuts to social service budgets throughout the state, including elimination of all state funding ($16 million) to domestic violence shelters (which was later partially restored by legislative action) and near-total decimation of funds for AIDS testing and prevention programs to save $52 million. Even with those catastrophic cuts, the state is still in massive financial difficulty: “The state has a $6.6 billion shortfall in the current fiscal year ending June 30 and is looking at a $12.3 billion hole for the new budget year. There is $1 million in reserve.”

This means that any dollar currently being spent has been extensively reviewed and evaluated and a very conscious decision has been made to prioritize spending in that area. For example, the state is still willing to spend money for California counties to investigate potential fraud in the In-Home Supportive Services (IHSS) program. IHSS is an essential program for many of California’s low-income elderly people and people with disabilities. Through the program, individuals are allotted a certain number of hours of assistance with personal services including bathing and grooming, home services such as cleaning, cooking, and errands including buying groceries and picking up prescriptions. The theory of the program is that assisting people this way allows them to continue living independently in their communities rather than in a long-term care facility, which not only preserves independence and dignity for program recipients, but also is a huge cost-savings measure for the state. If program recipients were to move to long-term care facilities, their costs would almost certainly be paid for by the state’s Medicaid program. And look at the cost differential: “The average cost of a skilled nursing facility is $55,000 a year. The average cost of in-home services in California is $10,000.”

Despite the cost savings realized by this program (I’m beyond the point where I think a state will prioritize and fund a program simply because it’s something that PWDs need to maintain independence and dignity), there have been massive cuts to the benefits portions of IHSS. The hourly wage paid to the home health providers has steadily declined and is now at $8.60 an hour. Needless to say, these extremely low wages make it nearly impossible for a PWD with IHSS benefits to find a home care provider with any kind of training or experience. There have also been steady erosions to the group of individuals who will be eligible for IHSS, with criteria requiring a higher and higher level of disability or functional impairment in order to qualify for the program.

The only area of program funding that has increased is fraud detection, with a grant of $26.5 million to counties to engage in fraud detection. That’s the equivalent of approximately 3 million service hours at the current rate of pay. There are also new requirements in the program that must be met by both recipients and providers in order to receive services: all providers must go through a criminal background check process, including fingerprinting; all program applicants and recipients must be fingerprinted and must place a fingerprint signature on each timesheet submitted for payment. It also requires counties to conduct unannounced home visits.

In the abstract, some of this seems to make sense. We don’t want health providers with criminal backgrounds coming into the homes of vulnerable people and exploiting or harming them. Except that the majority of providers are actually family members or immediate relatives of the PWD and the fingerprints can take up to 9-12 months to be cleared by the state, causing huge delays for PWDs who need vital services and delays in bringing often essential income to low-income families. (Not to mention how low-income people of color are likely disproportionately targeted by law enforcement and subject to criminal penalties.) It also seems reasonable to ensure that scarce service dollars are actually going to people who need and deserve them, rather than people receiving them fraudulently. But there has been a lot of research on IHSS fraud in the past, and it simply does not seem to be very prevalent: an audit released last year (pdf link) found a fraud rate of only 1% in the program. A recent program in Sacramento turned up similarly low levels of program fraud: “The Sacramento County District Attorney, who received more than $3 million from the state for anti-fraud efforts, reported last week that after four months her office had uncovered a total of 19 cases of fraud out of more than 42,000 homecare clients in the County.” That’s a rate of 0.04%. And if we estimate that each of those 19 cases fradulently took $10,000 a year from the state, that $190,000 in fraudulent benefits is dwarfed by the $3 million spent to identify that fraud.

So – these changes and programs are not about protecting recipients. They’re not about preventing widespread rampant fraud. What are they about? Some testimony at a recent legislative hearing sheds some light:

Nancy Jo Riley of San Diego testified that she and her client were “randomly selected” for a fraud investigation last October as part of a new “anti-fraud” initiative by the state. According to Ms. Riley, the agent from the Department of Health Care Services (DCHS) first threatened in a phone call to cut off all IHSS unless she and her client met with him immediately. At the subsequent meeting, the investigator asked her and her client a long series of “humiliating” questions. He then said he could not understand why a person with a severe disability like his should be subject to a fraud investigation in the first place.  He also said that her client, whose hands are frozen in a fist-like position because of his disability, would “probably” be exempted from new fingerprint requirements for homecare consumers.

These rules are an effort to make it harder for people to get services or to continue receiving services. They are an effort to erect barriers to service so substantial that PWDs cannot surmount them. They designed to humiliate and shame recipients for their disability status, to force them to prove themselves, their disabilities, and their functional impairments over and over again. They don’t even make sense from a cost perspective, as they spend far more in detection than is saved by the fraud they ostensibly prevent. They’re not targeting people who are fraudulently receiving services. They are targeting the very people the program is supposed to help.

The Opposite of “Disabled” is Not “Employable”

According to the United State government, disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” Or, in non-regulatory terms, disability is when a physical or mental impairment will last at least a year and will make someone unable to work. The ability to work is right there in the definition. A person who cannot work is disabled. If that person can work, they are not disabled. Disability and employability are mutually exclusive states of being.

That definition comes from the Social Security Administration and is applied to people applying for disability benefits, basically a wage replacement program to compensate for the salary the person cannot earn – so the focus on employability makes some sense. But more and more, I see this framework for defining and evaluating disability applied outside the benefits context, in deciding if someone is “‘really’ disabled.” It’s also notable that these wage replacement programs are the most commonly known and discussed form of disability-based benefits – while I’m used to seeing articles about how to handle the Supplemental Security Insurance (SSI) program, I rarely see coverage of programs from the Department of Rehabilitations, which provides vocational training and support to PWDs. And the false equivalence of disability and unemployability is problematic for a lot of reasons.

  • There are a whole lot of people with disabilities who are not employed due to problems with the economy and with employers who discriminate against PWDs when hiring or fail to sufficient accommodate PWDs while employed. Assuming that unemployment is due solely to a person’s disability status, rather than systemic stigma and discrimination, places the responsibility for finding and keeping a job solely on the shoulders of the PWD. This shifts focus entirely away from the employers who have ultimate power over whether an individual is going to have a job. Take a look at employment statistics for the federal government itself, where “the severely disabled represent 0.94 percent of the government’s workforce.” And despite those low numbers, the government has no problem telling people that unemployment is a disability issue.
  • When disability is defined as an inability to work, that overlooks an enormous segment of people with disabilities. About 37% of PWDs in the United States are employed – 8,581,869 people. But their ability to work does not negate or erase their disabilities. Those disabilities continue to exist and implying they do not lets employers off the hook for acknowledging and accommodating those disabilities in the workplace. It is already easy for an employer to overlook an informal request for accommodation or demand overbroad access to private medical files to “prove” whether or not the requesting employee “actually” has a disability in response to an accommodation request. It’s impossible to say how many employed PWDs have successfully requested and received needed accommodations relative to those who have been too intimidated to ask or had employers unwilling to fulfill their legal obligation to provide accommodations. But I would venture to guess that it’s quite difficult and involves risk for the individual employee. The stereotype that people who can work are not disabled and do not “really” need or deserve accommodation only encourages this behavior.
  • In our society, employability is often equated with worth and value on a fundamental level. In the current bad economy, lots of people have been losing their jobs, and half of them feel that being unemployed has changed their lives for the worse. Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.” Obviously, having “disabled” be seen as a synonym for something with those negative connotations does a disservice to people in both groups.

For Cereal, Cute Overload?

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

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

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

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

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

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

Accessibility and the Good Cripple

The Good Cripple archetype has been fascinating me lately, in part because I worked on several Bitch posts which involved this archetype and the ways in which it harms people with disabilities. The Good Cripple, of course, is the person with disabilities who never rocks the boat, never raises a fuss, never causes problems, doesn’t want to be a bother. The Good Cripple is stoic in the face of pain, cheerful in the face of adversity, and never, ever makes people feel uncomfortable with the very existence of disability. Good Cripples don’t confront or challenge.

It is my belief that the Good Cripple trope very much plays into accessibility issues. This is one of those situations in which both able and disabled folks have internalized values about disability because they have been consistently fed these values, and these internalized values feed into social attitudes, thus perpetuating the values. Oh, vicious cycle, how familiar you are.

For members of the able community, the Good Cripple is accepted as the “correct” model of disability. People with disabilities are expected to be models of patient suffering, cheerfulness, etc. In fact, there’s a subtle undercurrent which suggests that Bad Cripples do not deserve help or support. You need to be a Good Cripple in order to be entitled to social services, to charity (don’t get me started on charity), to being treated like you are a human being. This one dimensional model of disability, in which the person with disabilities is not actually allowed to have a personality or emotions, feels comfortable to able folk because it’s the model they are familiar with, and it’s the one which does not challenge their worldview.

For members of the disabled community, life is a series of constant reminders to be a better cripple. We shouldn’t make a nuisance of ourselves, we shouldn’t demand “special treatment,” we  should allow ourselves to be used for Special Learning Experiences, we should, above all, not cause any problems. We should not betray bitterness, unhappiness, pain, frustration, we should not have emotions which make other people feel uncomfortable. Definitely wouldn’t want to be…a bother.

So, how does this play into accessibility issues?

Great question.

Accessibility deniers can come up with a variety of creative reasons for refusing accommodations. It’s too expensive, it would take too much time, it’s ugly, it requires too much work, we don’t know how to do it, how many people with disabilities are there anyway, why should we be giving anyone special treatment, if we do this than everyone will be demanding that too, it’s not that important, it doesn’t matter, you have to break a few eggs to make an omelet, etc. One of the most telling excuses, though, is “well, no one brought it up.”

No one brought it up, we didn’t know it was an issue, no one said anything. Now, back in my more naive days, I thought to myself “this smells suspiciously like bull feces, and I know from bull feces.” In my more cynical maturity, though, I realize that it is literally true. There are a lot of cases in which no one is bringing up accessibility issues.

And that’s because of the Good Cripple paradigm.

People either don’t want to bring up accessibility because they have internalized the idea that they need to be Good Cripples, or because they don’t have the energy to get into a big fight about it. Everyone picks battles, and sometimes, the battle isn’t worth it. I’ll stop reading that inaccessible website because I don’t want to seem like a nuisance. I just won’t go to that business that I can’t access. I won’t ask for accommodations because that would be a bother, and I wouldn’t want to hurt anyone’s feelings by bringing up accessibility problems. I just want people to like me and to be able to go about my business, so what if I have to engage in complicated detours to get my business done.

The bad cripples raise the stink. The bad cripples are the ones who point out accessibility issues, who call ahead before going places to see if they are accessible, who write angry letters, who force businesses to comply with at least the bare minimum of the law. The bad cripples kick up a fuss, a nuisance, make a mess. I wouldn’t want to be like one of them, attracting all that attention.

This, then, feeds accessibility deniers. They can rest content that they have done everything they have been asked to do, because the Good Cripple archetype ensures that they are unlikely to be asked to do much of anything at all. Or, if they are asked, it’s by one of those Activist Agitator types, and no one would fault the accessibility denier for not ceding to unreasonable demands from one of Those Types. You know the ones. The bothers. The Nuisances. The ones who can’t just settle down and accept the way the world works.

The ones who are Never Satisfied. Those Bad Cripples that just don’t appreciate how much is done for them.

And the cycle continues.

The New York Times Tells You How To Eat

Every now and then, I take a gander at the New York Times “Health” section, usually with the goal of riling myself up so that I can rant about something here at FWD. There are a lot of things to get riled up about. Today, for me, it’s the conflation of size and health, and the attitudes about food, cooking, and eating which I see in the “Health” section.

The section called “Recipes For Health” is headed:

The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. Produce, seasonal and locally grown when possible, and a well-stocked pantry are the linchpins of a good diet, and accordingly, each week’s recipes will revolve around a particular type of produce or a pantry item. This is food that is vibrant and light, full of nutrients but by no means ascetic, fun to cook and a pleasure to eat.

I think that there are some fascinating assumptions embedded in here. Many of these assumptions reflect widely held social attitudes about food: There’s a “right” way to cook, there’s a “right” way to eat. You’re a good person if you subscribe to these ideals and follow them, and you’re a bad person if you don’t. In the “Health” section that’s taken one step further: You’re an unhealthy person if you don’t follow the dietary recommendations set out by someone else.

So, here’s the thing about cooking and disability. All of the things discussed as “linchpins of a good diet” get a lot more complicated when you have a disability. Setting aside the issue of allergies, let’s talk about the fact that some people with disabilities are extremely sensitive to flavors, textures, and smells. Some people with disabilities can’t do things like standing over a hot stove, lifting heavy pots, or going to a quaint local farmers’ market to pick up some of that fresh, local produce. Some people with disabilities actually have a really hard time coming up with things that they can eat, for a variety of reasons. And some people with disabilities face barriers to cooking.

What are some barriers to cooking? Well, what about the fact that many people with disabilities are of lower income and social status? Don’t you think that makes a difference when you’re considering what you can and cannot eat? It’s hard to get “seasonal and locally grown” produce when you live in a neighborhood which doesn’t really have stores with produce, when going to a different grocery store or a farmers’ market is not an option for you (too far away for you to have time, inaccessible, no safe transit). When CSAs won’t deliver to your neighborhood, how are you going to get produce?

What about the fact that food is expensive, and that some of the things touted in the “recipes for health” section are expensive or hard to obtain? A “well stocked pantry” really is not an option when you are living paycheque to paycheque (or benefits cheque to benefits cheque) and therefore cannot stock up on things. It’s easy to say “well, buy in bulk, it’s cheaper,” except that the initial outlay of cash for bulk foods might not be affordable for someone on a limited income; even though it’s more expensive to buy, say, boxed macaroni and cheese in the long term, it’s sold in a format which includes small, inexpensive packages which people can afford when they only have $15 to spend on groceries for the week.

And, of course, there’s the issue that getting into the kitchen isn’t as easy for some folks with disabilities. Some may live in settings where getting into the kitchen can’t happen because there is no kitchen, and people with a wide range of disabilities may have trouble doing things like standing in the kitchen for an hour to prepare a meal, controlling a knife to chop all that fresh produce, dealing with sensory input like smells while cooking, and so forth. I used to be one of those people who lectured about how “cooking is easy” and “it only takes a bit, it’s really no work at all” and how “you just have to commit” and then I woke up and smelled the beurre blanc.

“Cook healthy meals every day.” It’s an imperative. You must or you’re an unhealthy failure. And you must cook meals which are “vibrant and light.” Don’t cook what you want to eat, now. You need to cook food which is full of nutrients. (All food is full of nutrients.) In this case, “unhealthy” implies “fat,” and that’s an undertone in a lot of lecturing about what/how to eat, but there’s also some disability policing going on here too, some implications about how to live life “right.”

Food policing is an ongoing problem that I’ve been writing about for years, ever since I first started getting interested in the foodie movement and then just as quickly became totally disillusioned. When a prominent food blogger bragged about spending hundreds of dollars on food every week, I checked out of the movement. Because, you know, it’s not possible for me to spend $400 on food every week. I can’t actually be in the kitchen four hours a day. And the same holds true for many people, disabled or not, but being told what/how to eat carries extra baggage for disabled folks because we spend our entire lives being told what to do. “If only you did this, you wouldn’t be so disabled.”

Here’s what I think about food: “Eat what you love, love what you eat.” Our Ouyang Dan said that, and those are some words to live by. You don’t need the New York Times to tell you what to eat; you already know what to eat. The Times should stick to a recipe section, rather than preaching about what people need to/should eat.

Stigma Hurts Everyone

I read an interesting post recently, from a self-described “functioning alcoholic” discussing the possibility of treating alcoholism with pharmaceutical drugs. While there’s no successful pharmaceutical treatment at this time, there are a few things in development and it’s seeming increasingly probable that the drug companies will focus research and development efforts on coming up with something.

More interesting to me than the potential treatment itself were the issues raised in the post about concerns raised by this treatment possibility – because all of the concerns seem to be based on observations of how psychiatric medications have been implemented and viewed since their development. (These issues also obviously apply to pharmaceutical treatments for other conditions, including fibromyalgia, migraines, etc.)  The issues raised by the author of the original post include:

  • “Is it appropriate to battle a chemical addiction with another chemical?” This is parallel to the often-voiced concern about whether chemical/medication-based treatment is an appropriate response, or if it will just replace the symptoms of mental illness with dependency on psychiatric drugs.
  • “Won’t the pharmaceutical companies “define alcoholism down” in an attempt to get the broadest possible consumer base for their products?” – This is parallel to the concerns about encouragement to overdiagnose mental health conditions such as ADHD and depression in order to broaden the market for pharmaceutical interventions. It also draws from concerns about advertising Abilify and other psych drugs directly to consumers through TV and print marketing.
  • “Is life really worth living if you’re sober all the time?” – while the original author clearly intends this as a joke, I find it similar to arguments I’ve heard that “messing with someone’s emotions” through pharmaceutical intervention will inherently result in significant changes to that person’s personality and identity. This seems similar, in that it questions whether life will be the same if such a fundamental component of their self is being affected by pharmaceutical treatments.
  • “One of the arguments against a medicine-based treatment of alcoholism is that while it may certainly curtail the physical addiction it does nothing to address the underlying reasons why someone might choose to drink—anxiety, depression, an unwillingness to be in the world without some kind of sedating agent to take the edge off of existence.” This idea is often used to argue that medication-based psych treatment alone is insufficient, and must be combined with some kind of psychotherapy to effectively address the underlying emotional issues driving the mental illness. It is also sometimes used to suggest that taking medication alone is “cheating,” by mitigating the symptoms of underlying trauma or disorder without addressing the root causes, allowing the patient to ignore the root causes and eventually causing greater harm.
  • “I’m not unsympathetic to the argument that a certain amount of drinking is just fine. I know plenty of folks who drink almost as much as I do and manage to keep it all together. Why castigate their actions or make them think they need “treatment” for what could be considered just another lifestyle choice?” This parallels many of the discussions regarding what constitutes a mental illness and ties into the ideas of “neuroatypicality,” where a person’s mental functioning is described as different than typical mental functioning, without a value judgment as to whether typicality is better or worse than atypicality. It also references the underlying conception that being labeled as someone who could benefit from pharmaceutical treatment is shameful or stigmatizing, a judgment which would surely spread to those on the borders of atypicality.

I found all this fascinating because, while I’m used to hearing these arguments and issues raised in the mental health treatment context,  it’s clear that they are permeating our society and discourse beyond their direct application to mental illness.  Here, the spectre of passing out ADHD drugs in every elementary school classroom is being raised as a potential concern in the as-yet hypothetical development of a treatment for alcoholism – a serious condition which can lead to significant health consequences up to and including death.

To me, this says that addressing these issues – the misinformation, the stigma, and the bad acts of pharmaceutical companies – is important not only to people with mental illness, but also to the groups who could benefit from pharmaceutical developments and interventions yet to be developed. It is clear that these issues are so significant that they could discourage people from supporting or even considering the possibility of future treatments that could potentially help millions.

Oh, Feminists, Can You Stop Telling People With Disabilities How To Take Care Of Their Bodies?

(A slightly different version of this post appeared at this ain’t livin’ under the title “Yes, Actually, I Can Make An Informed Choice“.)

There’s an interesting trend I’ve been noticing more of late at feminist websites: The idea that certain women don’t know what’s good for them. These women need to be told in no uncertain words about how to take care of their bodies, how to live their lives, how to interact with medical professionals, how to make decisions about their medical care. And, by extension, how to handle their disabilities.

Who are these women? They tend to be women who do things which feminists disagree with. For example, women who opt to have large families are informed that they are endangering themselves with multiple pregnancies and they should stop. Likewise, women who are considered “bad sluts” within the good slut/bad slut dichotomy are informed that they’re doing it wrong. That they are incapable of caring for themselves. Women who opt to stay at home, to not go to college, are also informed that they are making bad choices. Women with disabilities are routinely informed that they don’t actually know their own bodies and that they are endangering themselves. Simply by daring to be disabled and proud!

I’ve seen supposedly feminist websites saying that women should be subjected to unnecessary medical procedures “to make sure that they get STI testing,” because apparently women wouldn’t get STI testing if they weren’t forced to come in for excessively administered pap smears. I’ve seen sites saying that women should get screenings which are not recommended because otherwise they won’t know to take care of themselves and won’t see a doctor in a timely fashion. I’ve seen sites arguing that women who have multiple children are “brainwashed” and “need counseling.”

As one might imagine, I find this extremely irritating. Because, here’s the thing. I think that everyone is capable of making informed choices. And when I make an informed choice, I do not need to demonstrate to anyone that I have satisfied their requirements of what an “informed choice” is, and I do not need to justify my choice, ever. If a woman decides that she wants to have 12 children and she’s making an informed choice to do that, and it is not my business to tell her that she is engaging in risky behaviour and she is brainwashed.

People are welcome to disagree with the choices I make, and to feel that they would not make those choices (but they can’t know my situation so they can’t speak to the issues specific to me which might have shaped my choice). But to tell me that my decisions are not valid because they do not meet someone’s definition of “how to take care of yourself” or “how to be a feminist” is extremely problematic. Please note that I do not view coerced and false “choices” as true choices, and I think there is a legitimate discussion to be had about the “choices” women are forced into. Not whether or not women who make those choices are “feminist enough,” but about the circumstances which force them into those choices. (See the difference there?)

I cannot help but find it intriguing that mainstream feminism is remarkably supportive of “choices” which fit in with the framework of things that it views as “feminist.” Using birth control, for example, is supported and regarded as an informed choice when in fact many birth control users are not well informed and are not making an informed decision. Choosing to only have one or two children is also viewed as a choice worth supporting, but apparently choosing to have more children than that isn’t a “valid” choice any more. Mainstream feminism has a checklist of “what’s feminist” and choices which fall outside that checklist “aren’t feminist” even though decisions do not occur in a vacuum, not even one of perfect feminism, and do happen on a highly individualized basis which means that one choice does not fit all.

This attitude is especially troubling when it comes to disability matters, because it reinforces the idea that other people know more about women’s bodies than they do, and that doctors can and should force procedures on their patients. That ladies don’t know what’s good for them, and therefore it’s up to other people to tell them what to do. That women with disabilities can’t possibly make informed choices because there’s no way they could possibly know more than a mainstream feminist who is providing a lecture about “what’s good for you.”

Try making an informed choice at your doctor’s office. Really. Try asking for more information so that you have a complete picture before you make a decision. And try informed refusal: “no, I do not want this test, it is not necessary.” “I don’t need an appointment right now.” “Given that I’m a virgin, a pap smear is not appropriate.” Informed refusal is met with “well, we have to do it.” Subtext: You silly woman, you don’t know what’s good for you.

This attitude, that certain people get to decide what is feminist and what is not, is a form of policing. There’s one way to take care of your body, and one way only, and you cannot deviate from it. Only certain things are feminist and everything else is antifeminist. If you do not “choose” the “feminist” choice you are a “bad feminist.” It all ties into prescriptive feminism and the idea that it is not only ok but obligatory to tell other women what to do when they are doing something which you disagree with.

For women with disabilities, this is extremely dangerous. Given that one of the core values of feminism is bodily autonomy, it is shocking and very upsetting to see feminists promoting denial of bodily autonomy for disabled women. The inherent conflict here seems lost upon many mainstream feminists, and when they are challenged on it, the pushback can sometimes be quite extreme.

Here’s the thing.

I can make an informed choice.

I can research a situation, I can weigh the pros and cons. I can think about the impact which various choices will have on me personally. I can think about what I need to do to meet my needs and to take care of myself. And, considering all of this information, I can make a decision about what I want to do and how I want to handle the situation. When it comes to medical care in particular, I think I know a little bit more about my situation and my body than other people, and I can in fact be trusted to do the right thing, for me. I can even, yes, consider the cultural context of my choices.

To tell me otherwise is to deny me agency. To tell me that a choice I am making is “antifeminist” or “not good for you” is to tell me that I am a foolish clueless person who should not be allowed to make choices for myself. Demanding that I justify my choices is invasive, rude, and inappropriate. I don’t demand to know why other people do or do not do something. I trust them to make their own decisions, based on their experience as unique individuals.

If people ask me for information or thoughts while they are making choices, I may offer it, although I try to structure it carefully to make it clear that I am not speaking for them or prescribing any course of action. But if my input has not been requested, I don’t give it.

It is not appropriate to tell women that they should undergo unnecessary, invasive, and sometimes harmful medical procedures “for their own good.” It is not appropriate to tell women that all bodies are the same and that therefore there’s only one way to take care of them. It is not appropriate to tell women that they cannot make informed, considered, thoughtful choices. It is not appropriate to tell women that there’s only one kind of feminism and only one way to be feminist. Or that a specific choice is always inherently antifeminist, no matter what.

I may choose a different thing for myself than you might choose for yourself. You might opt to respond to things differently than I do. But that does not mean that a woman’s personal decision about something like, say, cancer treatment is invalid. Or that she is “stupid” for not choosing what I would have done. Or that she’s “not feminist” because she did something I disagree with (or even that her individual choice is “antifeminist” because I don’t like it, even if I grudgingly recognize that she might be feminist despite that).

I can make an informed choice. You can make an informed choice. Can we trust each other to do that, and move on to more important things than policing each other?

By 13 January, 2010.    bad advice, blaming, bodies, feminism   



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