Category Archives: class issues

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

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

Eugenia: Siempre eqivocada

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

meowser: BADD 2010: The Total Erasure of Partial Disability

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

Jha: My Invisible Disability

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

Latoya: Open Thread: Science, Conclusions, and Assumptions

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

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

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

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

Food.

Earlier this week, Don started his “low-iodine diet” in preparation for exciting radioactive iodine therapy next month. He tells me he’s not allowed to eat milk or milk-products, soy or soy-based products, egg yolks, anything from the sea, iodized table salt, and all restaurant foods.

Food restrictions are pretty common for people with disabilities. A friend of mine discovered her chronic pain and fatigue was influenced, at least in part, by her wheat allergy, and described at length to me the perils of “hidden wheat” in things like Twizzlers, which is a brand of red liquorish available in North America. Another gets flair-ups if she thinks about stepping away from her gluten-free diet. Some people have serious allergies to corn, and must avoid any and all things with corn and high-fructose corn syrup. There are very specific diets required for people on certain types of medications, with certain types of short-term and long-term medical conditions, people with diabetes, and people preparing for types of surgeries. Many people recovering from Cancer treatments, surgery, or eating disorders, as well as people on certain types of medications that cause dramatic weight loss, are pushed (or required) to consume those “nutritional shakes” or other forms of meal replacements.

You know what’s fun for most of the above?

How incredibly expensive all of this stuff is.

So, let me go back to Don. Right now, all of Don’s favourite foods, and everything we’ve had stocked in the freezer, are off-limits. He tried to pick up rice milk so he could have some cereal, but surprise! Most rice milk in Canada is made with salt, except a very specific (expensive) brand that isn’t sold at our grocery store. So, either we need to go to the more expensive store downtown, I need to make rice milk (I have a recipe), or he needs to not have milk with his cereal for the next two weeks. We can’t find any bread we can guarantee is made without salt, so either he goes without bread at all, or someone makes him special salt-free bread. Today, while I was away, I think he ate some special, expensive, peanut-only peanut butter and salt-free rice cakes.

Because I’ve been busier than anyone probably should be, we’ve mostly been relying on very cheap, easy-prep frozen meals that are basically salt with food in between. I’m no less busy, but now Don needs to be eating so-called “real” foods that are time-consuming to prepare, and often very expensive to purchase, especially in comparison to how we normally do the food-thing.

If you’re not on a restricted diet, I recommend checking out some of the “special” foods that people on restricted diets need to purchase. See how expensive gluten-free foods are. Compare prices of cow milk, soy milk, rice milk, and nut milk. See how many things have “corn” in the ingredients list, and try and sort out how expensive it would be to try and eat nothing with corn in it, while still eating enough. Look at some of the stuff on the shelf and try and sort out what has “hidden” wheat in it.

The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries. Don and I are able to afford to spend extra money on this restricted diet because of family support, but this isn’t an option for very many people. If you do not have a restricted diet, imagine trying to afford the foods that allow you to eat without causing flare-ups in your chronic pain condition.

Imagine as well – and this, of course, applies even when one doesn’t have restricted diets – trying to put the energy and time into preparing these foods when dealing with second shift for the sick. Imagine trying to balance it all while some stranger tells you that your, or your kid’s, disability can be magically cured if you put your family on a special, expensive, restrictive, time-consuming diet.

Don and I are incredibly privileged in this. I can take the time and make him rice milk so he doesn’t have to eat dry cereal, and we can afford to run out to the store and buy those pricey egg-whites in a carton things. And this is a restricted diet he needs to be on for a little over two weeks, and then it’s done. So many people with disabilities do not have these options. It’s eat stuff that makes you sick, or don’t eat enough at all.

I wish I had some solution I could offer to this problem, some nice little bow of hope I could tie this post up with. All I have is the knowledge that these restrictive diets aren’t things people are on for fun, but because the alternatives for them are sickness or pain. And yet, the foods people are required to eat are priced like they’re luxuries.

Why SF’s Proposed Sit/Lie Laws Are a Terrible Idea

In San Francisco currently, there is something of a debate brewing about Mayor Newsom’s proposed sit/lie laws, which would make it illegal for anyone to sit or lie on any public curb or street in San Francisco (with a couple of exceptions).

The intersections with disability here are rather clear. For one thing, there are some intersections between homelessness and disability, because some homeless people are, for example, mentally ill or have disabling physical problems. Do either of these things make them unworthy of compassion, or not human? Of course not, but from the way this proposed ordinance is designed, it is, on a very basic level, criminalizing homelessness even more than it is already criminalized (not to mention socially stigmatized), while taking extra “common sense” steps to avoid citing non-homeless people for an offense. Observe the following response to concerns that SF police would begin to crack down on non-homeless people were the laws to go into effect:

During a heated, five-hour Board of Supervisors public safety committee hearing on the issue Monday, Adachi showed photographs of behavior that would be illegal under Newsom’s proposed law: a well-heeled tourist sitting on her luggage as she waits for a cab, a little boy sitting on a sidewalk clutching his skateboard, and tourists sitting on a curb and gazing up at the sights.

Assistant Police Chief Kevin Cashman said all of those people would be warned first to move and that none of them would probably receive a citation.

“Obviously common sense is going to be part of the training with enforcement of this statute,” he said at the hearing.

Ah, yes, “common sense.” Common sense, apparently, still makes the further stigmatization of homeless people de rigeur. Because apparently, they don’t deserve to sit down in public, unlike “well-heeled” tourists and neighborhood residents. I wonder what the response to a person with disabilities — tourist or not — needing to sit down on a public street might be? Someone waiting for an ambulance? While that is approaching a bit of a slippery slope argument (which I generally like to avoid), it is worth considering, simply because “common sense” will mean different things to different people — those whose job it is to enforce the statute included.

Also interesting is the framing of this ordinance in terms of concern for children. From one of the SF Gate articles:

Newsom, who bought a home in the Haight recently, was convinced to support an ordinance after walking along Haight Street with his infant daughter and seeing someone smoking crack and blocking the entrance of a business.

Certainly, children need to be protected from dangerous situations or potentially dangerous situations, but is an ordinance that criminalizes the poor and homeless — not all of whom are recreational drug users or addicts — really the way to do it?

Additionally, nowhere have I seen any plan to increase the number of homeless shelters or services for homeless people attached to this ordinance. The implicit message behind these proposed sit/lie laws seems clear: It’s too bad you’re homeless, but don’t you dare be homeless on our streets, because it might make our city look bad. Oh, and you certainly shouldn’t expect the city to help you not be homeless — even after it cites you for breaking the sit/lie law.

(Cross-posted to ham blog)

No, It’s Not As Easy As You Think

When I talk to people in the United States about disability and the need for accommodations, I am usually met with a bit of bewilderment. “You mean there’s still more work to be done on accommodations? I thought all that had been taken care of.” These are people who are used to seeing wheelchair ramps at the entrance to government buildings, used to seeing the hand switch for wheelchair users to open automatic doors, used to seeing the braille at the ATMs. Given their observations of those existing accommodations and a minimal awareness of the Americans with Disabilities Act (ADA) that mandates those accommodations, they assume that there’s been a consensus on the need to provide accommodations, a law mandating those agreed-on accommodations, and general compliance with that law.

As we well know, that is far from the truth. None of those assumptions are as true or are interpreted as broadly as people tend to assume. There is no general consensus on the need to provide accommodations for the broad range of disabilities that exist – there is general agreement that people who use wheelchairs should have access to government buildings, but there is nothing even close to general agreement on how to accommodate people with depression or even whether depression is a disability “deserving” of accommodation. The US does have a law mandating accommodations – but there are not equivalents in every country and there are significant holes in the ADA itself, often putting the burden of requesting accommodations and demonstrating a need for them on the person with a disability. Finally, the idea that agencies and businesses affirmatively comply with the ADA, obviating the need for enforcement, is just patently false.

A recent federal court decision in underlines all of these realities. In 2005, the American Council of the Blind filed a lawsuit against the Social Security Administration (SSA) “to compel SSA to provide alternative formats of communication that would enable [people with visual impairments] to have more equal access to participate in SSA programs.” (Court documents and information available through DREDEF’s site.) It took until 2009 for a court to agree and order SSA that it is required to issue notices to people with visual impairments in a format they can read – in Braille, large print, e-mail that can be read by a screen reader, computer disks, or audiotape recordings.

This lawsuit undercuts each of the assumptions above. First, there is clearly not consensus on providing accommodations, even to what would be considered a relatively “easy” impairment to accommodate – it is easy to anticipate the functional difficulties that a person with a visual impairment would encounter when presented with a written notice. A lot of these people – 250,000 of them – are getting benefits from SSA specifically because they have a visual impairment, so they’ve given SSA extensive documentation of those impairments and information on the functional limitations caused by the impairments. A much larger group – about 3 million in total – get retirement benefits from SSA. At any rate, SSA knows that these people have visual impairments and has detailed information on how those impairments affect them. And it still has not provided accommodations.

But what about the second assumption – there’s the ADA, right? It turns out that the SSA is not subject to the requirements of the ADA! The ADA applies only to state and local governments and agencies that receive federal funding – it does not apply to federal agencies such as SSA. (Raise your hand if you knew that – few people do!) The only disability rights law that applies is a precursor to the ADA, Section 504 of the Rehabilitation Act of 1973. While the requirements regarding accommodations from government agencies are largely similar, the Rehabilitation Act does provide limited rights in comparison to the ADA.

It’s also very clear that the SSA – despite being the primary provider of cash and medical benefits for people with disabilities – did not consider that it had any obligation to provide accommodations. When individual plaintiffs with visual disabilities requested that they be given notices in alternative formats, they were simply told that no other formats were available. This included notices to which people must respond within 10 days or risk losing their benefits. Even when they were initially sued in 2005, SSA argued that the Rehabilitation Act “did not even apply” to the issue of notices to people with visual impairments. Similarly, SSA did not consider itself obligated to let benefits recipients know that they had accommodation rights under the Rehabilitation Act and laying out a process for them to request and enforce those rights.

The result of the litigation is that SSA is now required to develop a procedure to 1) notify benefits recipients of their rights to accommodations for visual impairments  and 2) provide notices in alternative formats when recipients request them. Which is certainly a good thing – but one that I would simply expect from a government agency that administers disability benefits, rather than having to be ordered by a federal court after 5 years of litigation. And if accommodations that are this common sense, from a federal agency set up to deal with people with disabilities, are so hard to obtain and enforce, that demonstrates how very far we are from a society where PWDs are meaningfully accommodated.

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Integrating Primary and Mental Health Care

The increased integration of mental health care into primary care is one of my pet issues. Currently, primary care providers (PCPs), also called general practitioners, provide over half of mental health treatment in the United States – which results in up to 50% of mental health problems going unindentified, undiagnosed, and untreated through the primary care system. This is a wasted opportunity, as PCPs have significant opportunities to identify behavioral health problems early and provide interventions and treatments to prevent further deterioration.

This indicates a significant split between the physical health care and mental health care systems, where people are expected to go to their PCP for physical health issues and to self-refer to a mental health care clinic or specialist for mental health treatment. This is problematic for a whole host of reasons – primary among them the simple fact that this system simply isn’t working – even though the prevalence of mental disorders in primary care is somewhat higher than the overall population, PCPs are ineffective at identifying those people and providing them with treatment. Expecting people to identify themselves as experiencing a mental disorder, overcoming societal stigma to seek diagnosis and treatment, and assuming they have the ability to access mental health services through a fragmented and poorly financed system erects barriers to treatment that are likely insurmountable to someone experiencing an untreated mental health problem. Unsurprisingly, these barriers are likely more pronounced for already vulnerable populations such as the elderly and low-income minorities.

There are a lot of benefits to better integration of mental health care into the PCP’s role. The PCP is usually the patient’s first contact with the health care system and an individual is much more likely to know how to access care from a PCP than from an unintegrated mental health system. Patients are often more willing to attend appointments with and follow up with their PCPs because of the removal of stigma from receiving treatment. Other patients may not have meaningful access to a separate or nonintegrated mental health system, either due to financial barriers, long waiting lists, or other barriers.

The most significant problem, in my view, is the expectation that an individual should be able to determine they are experiencing a mental health problem. Given that the majority of PCPs, who have medical degrees and extensive training, fail to identify and diagnose mental health issues, expecting untrained laypeople to do so – while they are experiencing the mental health problem – is beyond absurd. It is even more absurd given that many mental health issues have a physical component. Depression results in fatigue and appetite changes, as does mania. The physical experience of a panic attack is often interpreted as a heart attack. Auditory or visual hallucinations could easily be interpreted as problems with the sensory organs themselves. This is sometimes heightened by an individual’s cultural context, as many Asian cultures describe the experience of depression almost exclusively in physical terms. Expecting an affected individual to untangle the complicated interplay of physical and mental effects and diagnose themselves with a mental health problem prior to seeking treatment is bound to fail.

Another argument in favor of integration is the huge overlap between physical and mental health problems. Estimates of this comorbidity vary wildly, but range somewhere from 20% to 80% of primary care patients (useful data, no?). Having a patient access two separate mental health care systems for their treatment ensures fragmented treatments that may contradict each other and are certainly not coordinated for maximum effect. Better integration would ensure treatments for physical and mental health issues complemented each other and treated the patient as a whole person.

This seems like an uncontroversial and common sense suggestion. It was embraced by the United States Surgeon General in 2001 and by the World Health Organization in 2008, but has seen little progress or momentum since then. Some local treatment systems are taking steps towards integration, such as these trainings done by the British Columbia health system, but there have been few steps towards addressing this issue in the larger health system.

The Community First Choice Option

So it looks like here in the United States, after what seems like a full century of arguing and revising and protesting and name calling, our legislature may actually pass a health care reform bill today. This is far from an unqualified victory – the bill is a very mixed bag from a number of viewpoints, and PWDs have both reasons to be happy and reasons to be upset. In other words, there’s not one “right” way to look at the bill from a disability rights perspective and people can still be committed to disability advocacy whether they love or hate this bill. (You’ll notice I cagily haven’t taken a position on the overall bill.)

There is one aspect of it that is very exciting, though, and has been the result of strong advocacy from ADAPT and the National Council on Independent Living: the Community First Choice Option. The CFC Option would give states the option to request federal funding to provide in-home assistance and support to PWDs. The goal of these programs is to facilitate PWDs staying in a community-based setting – living independently, with a partner, family, or other arrangement – rather than moving to a full-time care institution such as a nursing home.

PWDs would be able to access a variety of types of assistance, as ADAPT describes:

Services under this option would include services to assist individuals with activities of daily living (ADLs), instrumental activities of daily living (IADLs), and health-related tasks through hands-on assistance, supervision, or cueing. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation; managing finances; shopping for food, clothing, and other essential items; performing essential household chores; communicating by phone and other media; and traveling around and participating in the community. Health-related tasks are defined as those tasks that can be delegated or assigned by licensed health-care professionals under state law to be performed by an attendant. Services also include assistance in learning the skills necessary for the individual to accomplish these tasks him/herself; back-up systems; and voluntary training on selection and management of attendants. Certain expenditures would be excluded, including room and board; services provided under IDEA and the Rehabilitation Act; assistive technology devices and services; durable medical equipment; and home modifications.

There is a similar program, In-Home Supportive Services (IHSS) currently existing in California that is based primarily on state funds that has proved a win for both PWDs and for state budgets. The benefits for PWDs are clear – they are allowed the dignity and independence of a community-based setting rather than needing to move to an institution for support. It has also benefited the state, however, because the average yearly cost per IHSS consumer is $10,000, compared to the $60,000-80,000 it would cost to institutionalize that person. Since Medicaid, the state and federally funded health insurance program for low-income folks, would bear the bulk of the cost of institutionalization, IHSS provides a significant cost savings. These are programs that do the right and moral thing by allowing a PWD to remain in the community while saving the state money at the same time – a win-win. For yet another win, family members of the PWD can sometimes be paid to serve as a caregiver, increasing income to the household to ameliorate the poverty disproportionately experienced by PWDs and their families.

Here are a couple of stories from IHSS consumers about how the program affects their lives:

Jill has had back surgery and 3 knee surgeries and is unable to stand for more than 20 minutes at a time. Her 11-year-old daughter has ADHD and needs to be watched at all times. The combination of dealing with knee and back pain, migraines one to three times a week and caring for her daughter Courtney leaves Jill unable to take care of certain household needs such as cooking and cleaning her home. Without IHSS services Child Protective Services might have placed her daughter Courtney in foster care.

Christie Ritter: On October 1st, 2002, I was stopped at a traffic light. It was my day off from being a respiratory care therapist in a hospital. I worked neonatal and pediatric specialty. I was sitting at the light, waiting for it to turn green, heard some screeching tires. Next thing you know, I have a car coming through my driver’s side door. Broke my neck and my lights went out. So when I woke up, found out my neck was broken and I’m a quadriplegic.
Jahad:
Ritter has some movement in her arms and legs, but she can’t grip or hold things and she can’t hold herself up well enough to walk. Ritter fought for in-home care. And with therapy and assistance, she holds down a full time job and lives in her own home.

There are problems even with this portion of the bill – the availability of the optional federal funding has been delayed a year, and individual states can still opt not to administer the program. It is, however, a good and positive step in the right direction.

For Cereal, Stars and Stripes? Mocking “Paranoia” is Headline-Worthy?

OK, so I saw this one in my paper edition because I get it the night before (and technically a day late, since I am in the future!), but you can find it online too.

In the 16 March edition of Stars and Stripes writer Jeff Schogol wrote an article containing letters from people who sent letters to the Defense Department website. He calls the letters he said the DoD provided to him “the more bizarre feedback it gets” and notes that “[t]he authors’ names were withheld, but all spelling, grammar and paranoia are authentic“. (emphasis mine)

The article, titled “Airborne bears to catch bin Laden and other letters to the Pentagon” seems little more than a great way to laugh at people for myriad reasons. Let’s poke fun at their lack of intelligence! See how they can’t construct proper sentences? Those silly people without proper educations and who aren’t newspaper columnists or Pentagon officials! Ha ha! That’s so funny!

There were several letters published by Jeff Schogol in his article that I don’t feel comfortable publishing here, because I don’t feel that it is proper to display these letters that were meant to be private correspondence and won’t further his ableism. I don’t want to further hurt a person who might already be pained by finding hir something they never meant to have public spattered all over the internet and a military wide newspaper. They were not meant for this type of dissemination, and I think it was vile of whichever Pentagon employee thought it was appropriate to release them to a newspaper. I also don’t feel that it is in good taste to print a letter in a newspaper with the intention of laughing at the “crazy” person, as it is clear here that is what is meant. We are supposed to have a good chuckle at the supposed ludicrous ideas that are put forth by the letter writers. Schogol obviously feels that it is OK to call people paranoid and make light of mental illness and disability. Har har.

I am going to invite you to write to Jeff Schogol at Stars and Stripes and let him know that you don’t think it was a great idea to run this article, or that it was in good taste to reprint these letters. Or if you feel inspired, maybe you would like to use the same venue as the original letter writers who thought that they were writing private correspondence to the DoD, and let them know just how unprofessional it was to release those emails to a newspaper for a chuckle.

Yeah, what *about* your free speech “rights”?

Here at FWD, it is not unusual for us to get quite a few comments in mod that question, take issue with, or outright berate our fairly rigorous comments policy and iterations thereof in varying degrees. Many of these comments are some variation of “But what about my right to express my opinion?” or “But…free speech!”

Unsurprisingly, many of the comments that try to take us to task for “prohibiting” free speech are from non-regular (and, in some cases, first-time) commenters. I try to give people — on the internet and off — the benefit of the doubt. Perhaps these folks who try to direct the conversation to their supposed right to say whatever they want “because of the First Amendment” are just unaware that many social justice-focused blogs — especially those written by people who are members of various marginalized and/or traditionally underrepresented groups — have commenting policies, usually for very specific reasons. Perhaps they think that the First Amendment entitles them to say whatever they want without also getting called on it. Perhaps they think that bigoted or hateful speech is okay, since it’s “just” on the internet and therefore cannot be taken seriously or do any “real” damage. Perhaps they think that someone needs to pay Devil’s advocate when talking to (or about) disabled feminists and other people who do not represent (or are not represented by) the majority, and they are reasonable/intellectual enough to do the job!

Here’s the thing: This website is not  run by U.S. government or employees of the U.S. government who are representing their place of work. This is a privately-owned website.  Its contributors, commenters and readers are not all from or living in the U.S. The First Amendment applies, by and large, to the United States government’s attempts to contain and/or regulate things that people say or opinions that they want to express in myriad formats. In other words, “freedom of expression” does not automatically mean that you can bust out with some bigoted crap, and then whine or call foul when the blogger or author chooses not to publish or engage with said bigoted crap, or when someone else (perhaps another commenter) calls you on this crap. Free speech is not equivalent to some sort of magical blogular free-for-all. The “free speech!!11” defense (if you want to call it that) also has the unintentional side effect of privileging US-centric notions of being able to say certain things, apparently without consequence — something that some other countries do not appear to take so lightly (see, for example, British libel laws).

From a more anecdata-ish perspective, I have noticed that many of the people, at least on the internet, who cry “free speech!!1” in defense of their supposed right to say “un-PC” things/play Devil’s advocate/et cetera are people with various kinds of privilege (white, heterosexual, abled, cis, class–to name just a few) who simply do not seem to want to give up — or, sadly even so much as critically examine — one or more of the types of unearned privilege that they have. Put simply, they just want to shut people (who oftentimes aren’t just like them for one reason or another) up using the trump card of free speech. It seems to me that the thought process might go a little something like this: Who cares if there’s a person (or people) on the other side of that computer screen? I have the right to steamroll over their lived experiences, or tell them how wrong they are ’cause “normal” people don’t feel this way, or tell them to suck it up/grow a thicker skin, or that they’re just making things up so they can be angry about stuff, or looking for stuff to get mad about, or seeing things that “aren’t there” (because if I can’t see it, it must not be there!) or use any number of derailing tactics that are not pertinent to the actual discussion at hand, or direct the discussion to my experiences and feelings as a privileged/non-marginalized person and thus re-center my own (and the majority’s) importance in a discussion that is not even about me, because it’s within my FREE SPEECH!!1 rights to do all of this and more!

Boy, that must be really fun, getting to justify making things all about you and your “rights” all of the time in spaces that are run by people who are — gasp! — different than you, and who may not have much of a safe ‘net space anyway, since the entire web is full of people who probably share at least some of your oh-so-contrarian outlook on things (not to mention some of your privilege[s]).

The free-speechers also tend to miss one important thing: If they want to spew uninformed, privilege-encrusted opinions using this excuse, and their comment gets published publicly, it is perfectly within reason for bloggers, writers and other commenters to use their free speech “rights” to respond right back.

We Need to Consider More than Universities

There’s a lot of really good stuff out in the blogoamorphia[1. Sphere, pshyeah.] about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior[2. MY SARCASTIC VOICE LET ME SHOW IT YOU.]) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.