“You should commit suicide”: On Americans’ Lack of Empathy for People with Disabilities and Chronic Illnesses.



Americans are often unwilling, or unable, to empathize with chronically ill and/or disabled people. Some rough thoughts on this topic:

1.) Disabled people (and this includes chronically ill people) are a minority in the U.S., making up only 19% of the population—according to the most *generous* Census estimates in 2010. More conservative estimates set the figure at 8-10%.

[Source: https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html]

2.) It’s probably safe to say that many Americans do not personally know anyone with a disability or a serious chronic illness, nor (because of this) do they have any real understanding of the multiple layers of discrimination (social, governmental, financial, etc.) that disabled and chronically ill people deal with on a daily basis.

3.) Likewise, many Americans fail to understand that disability and poverty are linked, and that the U.S. government and society effectively seek to “punish” disabled and chronically ill people by imposing poverty and other adverse economic and social conditions upon us.




For some inexplicable reason, Americans continue to ignore the statistics about poverty and disability/chronic illness, as well as the very real ongoing practices of discrimination against people with disabilities and chronic illnesses. These discriminatory practices include (but are not limited to): discrimination in education; discrimination in employment; discrimination in health care; financial discrimination; etc. All of these are violent forms of systemic oppression comparable with those visited upon other minorities including Black/Brown/indigenous people, gender non-conforming people, gay people, immigrants, religious minorities, and so on.

4.) There is an irrational (Darwinian) insistence by Americans that disability is “different” from characteristics like race, sexual orientation, gender expression, immigration status, etc. It is not. No one chooses to be born with a disability. No one chooses to acquire a chronic illness. These are not “choices,” and to continue painting them as such denies inclusion in progressive social and political movements to people with disabilities and chronic illnesses. Similarly, disabled and chronically ill people are not “biologically” or “naturally” inferior (another U.S. folk belief) to non-disabled and/or healthy people. The mythology surrounding “natural inferiority” and disability/chronic illness is astounding and contributes to the dehumanization of people with disabilities and chronic illnesses, which in turn contributes to our treatment as “sub-human” and “not worthy” of basic human rights like health care or reliable employment.

In fact, it’s arguably from this place that President-Elect Donald Trump was coming when he mercilessly mocked and dehumanized a disabled reporter during a public speech this past Fall:

5.) Americans—having never actually had a not-for-profit health care system and being used to the abuse of receiving sub-par health care—-continue to normalize the under-servicing and lack of access of human beings in general, and disabled/chronically ill people in particular, to health care.

Although the U.N. has declared health care a human right, and although virtually every other major country in the world has decreed health care a human right, Americans continue to use terms like “entitlement” and “special privilege” to describe even basic forms of access to health care.

Here is an example of the rhetoric that prevails in America when politicians and the public discuss access to health care:


Notice the language used in this video by Romney—-who in 2006-2007 created “RomneyCare,” a Republican health care plan implemented in the state of Massachusetts which later served as the blueprint for “Obamacare.” Obamacare is a fundamentally Republican health care plan, and the language in this video is representative of Conservative (and even mainstream) rhetoric on health care in the United States:

  • “No more free ride.” – Repeated multiple times throughout video.
  • Romney states that one of the purposes of his plan is so that sick and disabled people “cost us less money.” Presumably “us” here refers to “healthy, non-disabled people.” Disabled and chronically ill people have historically (and are still) represented as “burdens” to the United States, rather than as full citizens who offer potential assets or special skill sets to the nation.
  • “[…] ‘they’ won’t be showing up at the emergency room, which is far more expensive to the rest of us.”
  • “[…] having people show up when they get sick and expecting other people to pay—-that’s a Democratic approach.”


Americans truly believe that it is “normal” to not have access to (or use) health care in a preventive or “maintenance” way, and that it is “normal” to wait until a medical situation is life-threatening, then show up at the E.R., and then be bankrupted by astronomical medical bills (or have those bills eventually forgiven and absorbed by the larger system, which includes taxpayers, the government, and private, for-profit health insurance corporations).

6.) Americans, because of the warped vision of health care I touched upon in Point #5 above—-a vision that has been normalized over generations in this country—-truly believe that:

  • No one “deserves” health care.
  • Health care is a “special privilege” or “entitlement.”
  • Going untreated for months and years and then only seeking treatment at the Emergency Room when the situation is life-threatening is “normal.”
  • Being bankrupted by medical bills is “normal” and “just part of life.”
  • All problems can be solved by emergency care in the E.R.
  • Dying because of lack of health care (in the wealthiest nation in the world) is “normal.”
  • Disabled and chronically ill people are “naturally inferior” to non-disabled and healthy people, and represent a “burden” on the nation because “they” cost “us” money. Therefore, we should not care about whether “these people” have access to health care. According to this logic, it’s better to “let nature take its course” and allow people to die from treatable diseases. Social Darwinism at its most disgusting.
  • A capitalist health care system, in which private, for-profit insurance conglomerates make billions upon billions of dollars by denying coverage and treatment to disabled and chronically ill people, and by shifting ever-increasing amounts of financial responsibility on to poor, working-class, and middle class people, is “normal” and “OK.”
  • It is “normal” and “OK” to profit off of illness, disability, and death.
  • It is “normal” and “OK” to value the massive accumulation of private wealth over human life.
  • It is “normal” and “OK” that these are the most recent reported sums of revenue for the 4 major private, for-profit health insurance corporations in the United States. (If anyone finds more recent figures, please let me know):

+Aetna: $47.294 billion in revenue (2013)

[Source: Wikipedia]

+UnitedHealthCare: $157.1 billion in revenue (2015)

[Source: Wikipedia]

+Blue Cross (owned by the “Health Care Service Corporation”): $11.09 billion in revenue (2010)

[Source: http://www.chicagobusiness.com/article/20130903/NEWS03/130909990/blue-cross-parent-boosts-profit-in-second-quarter]

+Cigna: $29.119 billion in revenue (2012)

[Source: Wikipedia]

  • It is “normal” and “OK” when things like this happen:


  • It is “normal” and “OK” to have Wall Street bureaucrats make decisions about access to medical care and treatment for acutely and chronically ill people, as well as disabled people, despite the fact that the system according to which these Wall Street bureaucrats do so is entirely premised upon an obscene conflict of interest with their (admittedly) capitalist mission to constantly increase profits for themselves, their companies, and their shareholders.
  • “The problem” is “poor people who use ‘my’ taxes to get healthcare” and/or “sick people who ‘cost too much,'” —- as opposed to “private, for-profit health insurance conglomerates and their incessant greed.”
  • It is totally “OK” and “normal” to push people—-sick and disabled people who actually NEED health care—-out of the health care system by using complex bureaucratic rhetoric and invented/fictional concepts like “pre-existing condition,” “high-risk pool,” and “lifetime limit on coverage.” It is, further, “normal” and “acceptable” for private, for-profit (billionaire) insurance conglomerates to use these loopholes to terrorize, torture, inflict pain upon, and murder disabled and chronically ill people in the interests of pursuing ever-greater profit margins for themselves and their shareholders.

7.) Because the vast majority of Americans are either healthy or reasonably healthy (which I am defining as NOT having a disability or chronic, ongoing illness that CANNOT be cured but CAN be managed with treatment across the life span), they don’t understand how the private, for-profit health insurance system works.

They don’t understand how it works because they don’t use it.

They don’t use it because they are healthy (read: privileged) and don’t need to use it.

….and this is how I end up with people telling me (for example), that it’s “OK” if I—-as a person living with Multiple Sclerosis since 2007—-am denied access to health insurance and health care, because “you can just go to the E.R.”

Um. The E.R. doesn’t treat chronic, incurable diseases. Those are managed outside the E.R. with long-term, daily treatment. They cannot be managed with a one-time trip to the hospital. They cannot be managed with ten trips to the hospital. They, in fact, cannot be managed with DAILY trips to the hospital.




Likewise, people (well intentioned, caring people) think: “You can do a fundraiser to pay for your treatment. We can do a Kickstarter.”


So if I don’t have insurance, I estimate that my annual, out-of-pocket medical costs (WITHOUT INSURANCE) would be around $200,000 – $250,000.

Not once.

Not one time.

Remember—-CHRONIC illness. Not acute. This isn’t a round of chemo to “cure” me. It is a LIFETIME need for supportive care and ONGOING MANAGEMENT of a CHRONIC (NOT ACUTE) illness.

Are you really committed to doing an annual fundraiser and raising around a quarter of a million dollars per year to pay for annual, ongoing maintenance and treatment? Can a small group of individuals or “the community” do that, especially if one’s community is not rich? Or would that level of cost be better borne by the entire U.S. population?

Oh, wait….I remembered that nobody wants to pay taxes in this country.

8.) Healthy, non-disabled Americans truly have absolutely no idea what it is like to actually try to USE insurance when you NEED it, nor do they understand what it’s like—-day after day, week after week, year after year, decade after decade—-to navigate a health care system that prioritizes ITS OWN PROFIT over YOUR HEALTH AND LIFE.

Healthy, non-disabled Americans don’t understand the hours upon hours of phone calls, letters, bureaucracy, and red tape it takes to get a medication for M.S. “pre-approved” or through “Utilization Review”—–both obscure processes used by private, for-profit health insurance companies with the express goal of DENYING coverage for the medication.

Moreover, these same Americans do not understand what it is like to face the reality that the medication you need to live costs about double your annual salary:

[Source: http://www.npr.org/sections/health-shots/2015/05/25/408021704/multiple-sclerosis-patients-stressed-out-by-soaring-drug-costs]

9.) Healthy, non-disabled Americans truly believe that illness and disability are “personal, individual tragedies or problems” and that “that’s your problem—-not MINE.”

Underpinning these beliefs is the misconception that: “Well, I will never get sick or become disabled. I’m not like THOSE PEOPLE who COST ‘US’ MONEY.”

Underpinning these beliefs is a deep-seated hatred and fear of disabled and chronically ill people—-which, at its core, is actually a deep-seated fear of one’s OWN vulnerability and unwillingness to acknowledge that (roll of the dice!) you, too, could become chronically ill or disabled tomorrow.

10.) Healthy, non-disabled Americans fail to understand that health care for disabled and chronically ill people intersects in critical ways with race and racism in the United States.

For instance, Black children are twice as likely as their White peers to have Asthma (a CHRONIC, LIFELONG as opposed to ONE-TIME, ACUTE illness).

Source: https://www.aaaai.org/about-aaaai/newsroom/news-releases/Black-children-were-twice-as-likely-to-have-asthma

Black children are also ten times more like than their White peers to die from asthma, and may have special needs in terms of the types of asthma medications they can or cannot take to treat asthma, due to racial/genetic differences in responses to medications such as Advair:


With respect to Multiple Sclerosis, there is a lower statistical percentage of Blacks with M.S. than Whites. HOWEVER: when Black people do get M.S., they tend to develop Primary Progressive M.S. (a more aggressive and disabling version of the disease) instead of Relapsing-Remitting M.S. (which is less aggressive, disables more slowly, and is more common among Whites):


Primary Progressive M.S. requires more aggressive (2nd and 3rd-line) treatments over longer periods of time, and more proactive and consistent primary care and maintenance care. Thus, continuing to treat M.S., asthma, and other chronic illnesses as though they are “acute illnesses that can be treated in the E.R.” is absurd:

I might add more to this later. That’s what I’ve got for now.

DRAFT: Thursday, December 1, 2016. 15:51H CST

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New eyewitness statements regarding the “gas chamber” at Mokabe’s: Part 2

Before reading the text below, please see this post and this post for context. I [Valéria] am not the author of the italicized text below. The author is Sara, aka @Vipondalicious on Twitter. Any and all questions or comments about this particular piece should be directed to Sara. Thank you. -VMS


“Reflections After Analyzing the Assault on MoKaBe’s” – A Statement/Op-Ed
By Sara, AKA
@Vipondalicious (also the author of this compilation of evidence).

It is obvious that the police are not on St. Louis’ streets to protect the community from potentially dangerous situations. It is obvious by both the actions they’ve taken and those they haven’t.

When the police were outnumbered near Grand and Hartford, when the second, angrier, more provocative protest had formed and begun marching, they did nothing to calm the situation down. They didn’t try to engage with the protesters, hear their complaints, or talk about their own experiences as police officers. They didn’t try to keep everyone cool, the way the clergy woman and so many others did at MoKaBe’s. They set their jaws and allowed themselves to become outnumbered and provoked so they could call for reinforcements and bring out their toys.

And when their toys were out, all bets were off. Can’t pull ’em out and then not play with them, right? For nearly two hours, the police assaulted the people in MoKaBe’s. They used a chemical agent that is BANNED IN WAR to trap civilians inside a building. Twice. They gassed official safe houses. A group of them dragged a passerby off the sidewalk, leaving terrified people yelling, “What’s your name? What’s your name?” after him.

The people who were at MoKaBe’s in the spirit of solidarity could not have represented less of a threat to the police that evening. They were compliant. They were non-violent. They were unarmed. They weren’t on the move. They were on private property at the invitation of the owner.

You can not commit violence against a gathering of people and expect everyone not to panic. You can not assault unarmed civilians and expect people not to be angry about it. You can not use weapons on residential streets and expect people to feel safe. If you have these expectations, then you are not rational. And is this the behavior that we expect of our law enforcement and state security personnel?

If our civil servants cannot conduct themselves with civility towards civilians, then we quite literally can not call our society civilized. [They] are the savages, the brutes, the thugs that [they] accuse [us] of being. [They] are the mindlessly violent criminals. Our calls for peace are a farce.

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New eyewitness statements regarding the “gas chamber” at Mokabe’s: Part 1

In the wake of my original post regarding the events that transpired at Mokabe’s coffee shop on Arsenal in the early morning hours of 11/25/14—and in response to some of the reactions from naysayers, as well as from Chief Dotson himself-—I was approached by two members of the community who asked if I would be willing to publish accounts (or statements) authored by them on my blog.

The first of these statements was provided to me under the condition of anonymity, by “A Resident of Tower Grove South.” (I know and have verified this person’s identity but was only allowed access to the account by guaranteeing I would not reveal the person’s name, etc.)

Below is the text and accompanying evidence (images) sent to me. I have altered nothing about them. -VMS


“A View from Outside the ‘Chamber'”
By: A Resident of Tower Grove South [Anonymous]

In light of responses to Valeria’s blog, I am compelled to offer an account of what was going on outside Mokabe’s while she was inside.

Around 11 pm on Mon, 24 Nov, I am returning from a mercifully quiet vigil downtown. As I near my house in Tower Grove South, my phone starts pinging insistently, with messages amounting to  “Are you ok? Grand just got busy.”

From where I sit at the intersection of Gravois and Grand, foot traffic is busier than usual for that time on a weeknight, but I see nothing suspicious or dangerous, so I go home to care for a friend who had been injured earlier in the evening.

Having gotten my friend situated, the noise of choppers and sirens reaches a point where it is less stressful to go out and look than to stay home and wonder what’s happening, so I venture out on my bike.

I ride north on Grand around midnight and find…  not much.  Yes, there had been a number of storefronts knocked out, and there was clear evidence that something heated had taken place. But it was over.

Board up crews are well into their job, neighbors are cleaning up broken glass, and no one is interfering with their work.

Police cars are stretched across Grand at Arsenal and Hartford, preventing thru traffic.  A large group of people are standing in the middle of the street on that block.  Police line the sidewalk on the east side of Grand, by Panera and FedEx. The west side of Grand is moving freely.

A few of the protestors are chanting, but most of them are just standing there, talking amongst themselves or checking their phones. They aren’t doing anything in particular.  Nothing to see here.

So, I continue up to Arsenal, head west, and stop half a block down at St John’s Episcopal Church, one of several area churches to offer itself as a designated sanctuary. Clergy are outside welcoming people in for respite from the cold. The staff has been busy for sure, and say that things had been “pretty hot” a little while ago, but it calmed down.  I’m not that cold, so I stand on the sidewalk to chat a bit longer, then head back to Grand.

A few minutes later, I am standing in front of AJ &R pawnshop, watching as two young people try to convince the group of protestors to walk south on Grand. It is slow going.  The crowd looks tired, and it has thinned out substantially.  The influx of people warming up at St. John’s probably explains some of the change in numbers.

Those who are moving are mindful of the crews cleaning up from earlier vandalism. After all, those who had been engaged in those activities were long gone.

Peering southward, it looked like all of the action for the evening was over– until a friend spotted me from the north side of the block.

“Hey,” she says, ”you need to get out of here. The SWAT team is all geared up over there,” pointing to the north side of Arsenal, where all I could see were a bunch of bright lights blocking Grand a little ways past the intersection. They hadn’t been there a few minutes before.

My friend and I speak for a moment, but we can’t finish our thoughts before shots pop at the other end of the block. My friend refuses leave the area, but promises she will go to St John’s. She insists I promise to go home, so I promise.

The noise- which I soon realize is the sound of tear gas canisters- draws closer and more frequent, progressing north on Grand. As I round the corner at Arsenal, people are headed into both Mokabe’s and St John’s for shelter. Mokabe’s is closer.

I am nearly cut off by a large, black police vehicle. The driver takes the corner a little too tight. While I manage to retain control of my bike, others on foot behind me are not so lucky. I look behind to see several of them fall, and realize I can’t turn around to help them without running into something.

Just as I see someone reach down to them, a gas canister sails over my right shoulder, crossing my body and landing by my front tire. As the bluish smoke seeps out from it, I take a big gulp of air and pedal all the way down to the next light. I blink my stinging eyes in an alternating fashion, clearing each one briefly, as I momentarily navigate with the other. I can’t see what happened to the vehicle that had come so close. But when I turn the corner at the light and stop to rinse my eyes with my water bottle, I realize that neither police nor other protestors have traveled that far.  My glasses are gunky from the gas, so I can’t see particularly well down the block, even though my eyes now feel ok.

The film on my glasses, however, brings me to a word about the tear gas itself:  Because I was on my bike, my exposure was minimized.  I got a good breath before the gas dispersed from the canister, I didn’t get much gas in my eyes, and I rinsed out very quickly. However, I can tell you from that brief experience that the gas this night is not the same composition as what the military uses. It’s worse.

The gas the military uses dissipates quickly. If you do nothing but air yourself out, the stinging goes away in 5-10 minutes.  No residue, no after effects.

The gas the police use this night is mixed with something, causing it to stick around on everything it touches. It’s almost oily. It stays on clothes and skin. It can reactivate upon exposure to water, causing stinging- or even chemical burns- all over again.  It reeks hours later.  Persistent agents like this are dangerous specifically because they prolong and repeat exposure to the irritant.

I later spoke to an MP with the National Guard, who said he’s heard the same thing from friends deployed to Ferguson and environs: the gas that local police are using is a more persistent agent than what the military deploys.

But back to Grand and Arsenal.  This is the end of my eye-witness account, but hardly the end of my evening. I go home, and my friend who said she was going to St John’s didn’t get that far.  She texts me from Mokabe’s.  It is now roughly 1:15 AM:




And I don’t have much to add to that. Using a persistent chemical agent in a residential neighborhood—totally unnecessary.  Gassing a bunch of people standing around in the street, long after any vandals who had been among them were gone— totally unnecessary. Punishing the wrong people by corralling them into a coffee shop and blocking all exits with tear gas and riot lines—totally unnecessary.  Adding fuel to the fire concerning militarization of police and escalation of police brutality—totally unnecessary.

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Welcome to the “gas chamber”: a first-person account of Mokabe’s on the morning of 11/25/14.

Café or military training exercise? You decide.

Café or military training exercise? You decide.

There is a rite of passage employed by many police forces and by the military. It is known as “the gas chamber,” an exercise used in basic training to ensure that recruits know how to properly fit and use a gas mask, and to graphically illustrate the consequences of failing to fit or use a mask properly.

In the early morning hours of Tuesday, November 25th, 2014, I was trapped inside a coffee shop in St. Louis along with dozens of other civilians. We were tear gassed by the police inside this enclosed space, and were subsequently prevented from exiting it for a period of time. In other words, the St. Louis police effectively subjected a group of civilians to the “gas chamber” ritual, but without our knowledge or consent prior to initiating it.

Below is my account of what happened, originally written out for a journalist who asked me a question about it via email. It’s probably going to seem quite telegraphic compared to many of my other posts. This is because it’s been a long week (not even over yet) here in STL, and I got bronchitis after being gassed. I’ll flesh the details out later.

It’s worth adding, too, that Amnesty International has more or less corroborated my entire account, as have other people who were also present. More supporting evidence from additional witnesses and even mainstream media corroborating my account can viewed here, here, here, here, here, and here.

For a long series of updates on this original post (with the latest update occurring on 12/12/14), please scroll to the very bottom.

Outside Mokabe's, at approximately midnight on Tuesday, 11/25 (evening of Monday, 11/24 into Tuesday, 11/25).

Outside Mokabe’s, at approximately midnight on Tuesday, 11/25 (evening of Monday, 11/24 into Tuesday, 11/25). [Click photo to view full size.]

We were at Mokabe’s on Arsenal, having just spent hours in Ferguson protesting and documenting others protesting in front of the Ferguson P.D. As we went to enter the coffee shop, we noticed a police line of cops in full riot gear, along with a tank and some other vehicles. There were some people protesting on the sidewalk outside the coffeeshop. The coffeeshop was open and—-from what I understand—-had designated itself a “safe space.” There was free hot chocolate and free snacks, and it was clearly open to the public. (I am saying this because in the wake of the gassing some people questioned whether I and others had “invaded” and/or “broken into” the café. No, we did not. It was open and we were welcomed there.)

The protesters in front of the coffeeshop were vocal but peaceful. Up on the second floor, where my friends and I sat down to rest and get something to eat and drink, there were a couple of windows. We could see down onto the sidewalk. I witnessed no acts of violence by protesters, no threats, no attempts to come off the sidewalk—–nothing. The protesters were vocal (chanting and so forth) but otherwise non-threatening and, in my opinion, they were lawfully exercising their rights to free speech and assembly:

At one point the police appeared to retreat and the crowd cheered.

This continued for approximately an hour. The windows on the second floor were open. We could hear the protesters and occasionally would look out and see the police line, just staying still (facing off with protesters). Based on what I witnessed, the situation did not appear to be escalating. If anything, it appeared to be calming down.

Some of the protesters dispersed and came into the coffee shop to rest.

There was now almost no one on the sidewalk outside protesting. Everyone appeared to be taking a break. Inside the coffeeshop, the atmosphere was peaceful and relaxed. People were sitting at tables drinking hot chocolate or water and eating snacks. People were charging their phones. If you didn’t know about all the events that had occurred previously that night and you just beamed down into that coffeeshop from Mars, you’d assume it was a typical night in St. Louis. Nothing seemed out of the ordinary. I did notice 2-3 people from Amnesty International wearing yellow t-shirts that proclaimed their affiliation.

All of a sudden, from outside, I heard: POP-POP-POP-POP-POP-POP!!!!! Some people inside the café yelled things like: “WOAH!” or “What the hell??” Everyone ducked down instinctively because it sounded like possible gunfire.

I got up and went over to one of the second floor windows, along with a few other people. We looked out onto the street below and there was white smoke. Tear gas. You could see it but it wasn’t that thick yet. We felt that on the second floor we’d probably be OK, even with the windows open.

Then, just as quickly, it changed again. We heard more noises (like pops and flare sounds) and then the white cloud of smoke got massive and thick……and headed right towards us.

I started to frantically turn the crank on the window, trying to get it closed. Someone behind me yelled: “SHUT THE WINDOWS!!!! SHUT THE WINDOWS!!!!!” My friend and I cranked one window shut, while some people a few feet away were closing the other second-floor window.

By now we could hear people on the first floor panicking, yelling, coughing, choking. We could see them kind of stampeding inward (like away from the front windows and doors on the first floor), and we could tell they were just trying to get away from the smoke.


I started wrapping my scarf tightly around my face, covering my nose and mouth. I tried to breathe only through my nose. On the second floor, we still thought we might be OK. Maybe we had shut the windows in time. Maybe we would be good.

……and then we smelled it.

That acrid, distinct smell.

Another friend of mine said: “Oh, shit. I’m smelling it…..”

I looked at him and nodded. We knew. We knew we were screwed.

Probably less than 30 seconds later, the gas hit. I will never forget that moment because it felt like someone took a vacuum and sucked all the air out of my chest. Or like I got kicked and had the wind knocked out of me. It was such a potent feeling, I dropped immediately to my knees. I felt my eyes, nose, and mouth burning. The worst part, though, was that feeling in my chest. I thought I was going to suffocate. I wondered if I would die. For some reason, I ripped the scarf off my face even though that possibly made things worse by exposing me to more gas particles. I was not thinking rationally. I remember having only one clear thought in that moment. It was: “Thank God I took Albuterol [a brochodilator people with asthma use to open up the passages in the lungs] around a half hour ago.” That medication possibly prevented me from having a full-on asthma attack.

Now everyone in the coffeeshop—–both floors—–was panicking. We had absolutely nowhere to go. The café was full. Everyone on both floors was feeling the effects of the gas, so it was clear nowhere was safe. People started to run or press against each other, but there was no place to go.

I heard a voice say: “It’s OK! It’s OK, guys! Don’t panic. You can cough. It’s OK to cough. Just don’t panic. This is going to pass; it will stop. Just try not to panic.”

That voice calmed me down. I suspect, in retrospect, that that was one of the Amnesty International workers.

At that point someone discovered a door that led to a basement—–a separate basement, which presumably would have fresh air. “Everyone to the basement! Everyone come down calmly to the basement! There’s fresh air there!”

Everyone filed downstairs and they shut the door. The air in the basement was clean.

Downstairs everyone—–myself included——had tears and snot running out of our eyes and noses. A lot of people were coughing and spitting, trying to get the gas particles out of their lungs and mouths. Everything was burning.

A man came over with a bottle (which I later found out was a mixture of antacid and water used to neutralize the gas) and rinsed our eyes and faces with it. When I took a selfie (on Twitter) labeled “white tear gas residue,” I was mistaken. The white residue was from that bottle—–from having my face and eyes rinsed. A couple of earlier selfies show the snot and tears running from my face.

The burning kept going for what seemed like 10 minutes, and then it finally stopped.

Eventually we all went back upstairs, but we left the windows and doors shut. The police had formed a line directly in front of the coffeeshop, blocking us in. We were trapped inside. There was some confusion about whether we were legally allowed to leave or were effectively being detained:

Riot line outside the front of Mokabe's, approximately 20-30 minutes after gassing us.

Riot line outside the front of Mokabe’s, approximately 20-30 minutes after gassing us.

Some people did get out. I think they gassed us again, because I remember we again had to hide in the basement. Eventually some of us escaped out the back door and ran on foot to a church nearby.

As I was running I could see, hear, and smell more gas canisters being deployed on the streets. It seemed like they were trying to trap us into smaller and smaller spaces. No one understood then—–or understands now—–why we were targeted inside Mokabe’s.

We do not think this was an accident.

It seems like the police intentionally trapped us in the coffeeshop and then gassed us inside, knowing full well they would create a “gas chamber” from which we’d be temporarily unable to escape.

And they did this while we were vulnerable——relaxed, not protesting, not doing anything other than sitting down and talking as one would on any other day inside a coffeeshop. We were fully unprepared for this. We’d let our guard down.

To me, the most disturbing aspect of this was the entrapment, and the fact that they attacked us without provocation. Amnesty workers salvaged some of the gas cans from the scene, and based on the labeling of the cans what they used was CS gas, which is specifically not supposed to be used in enclosed spaces, since it can cause death.

I saw the police entrap groups of people in other ways earlier that same night in Ferguson (like forming tight circles around them) and then gas them. They are deploying chemical warfare against civilians even when unprovoked. This is a human rights violation.



UPDATE #1 [11/30/14, 20:44H CST]: Yet more footage has emerged, shot from outside the café.

UPDATE #2 [12/1/14, 16:45H CST]: Chilling screen captures from St. Louis Cop Talk—a message board comprised of current and former members of law enforcement—reveal that Mokabe’s may have been intentionally targeted last week.

UPDATE #3 [12/3/14, 13:23H CST]: St. Louis Police Chief Dotson has issued a series of responses to the Mokabe’s gassing incident which were published in The Riverfront Times. They can be read here.

UPDATE #4 [12/4/14, 01:17H CST]: Two new eyewitness accounts of the incident at Mokabe’s have emerged. They can be viewed here and here. (More video is potentially forthcoming over the next day or so….)

UPDATE #5 [12/6/14, 08:58H CST]: New footage of both the interior and exterior of the coffeeshop (shot by livestreamer @Rebelutionary_Z and edited/compiled by @Vipondalicious) has emerged and, yet again, it corroborates all other eyewitness accounts. There is now some evidence to suggest that at least one gas canister was either launched, or “accidentally” landed INSIDE Mokabe’s. View the footage here:

UPDATE #6 [12/6/14, 09:20H CST]: This. is. not. over:

MokabesEmployeesUPDATE #7 [12/11/14, 11:06H CST]: Here is the Riverfront Times’ follow-up story on the gassing—-a product of all the new footage and eyewitness accounts that have emerged over the past couple of weeks. Additional related post/video here.

UPDATE #8 [12/12/14, 02:25H CST]: In response to massive public outcry and direct legal action on the part of half a dozen protesters, a Federal Judge has issued a Temporary Restraining Order (TRO) banning (in some situations) or setting severe legal limits (in other situations) the use of chemical weapons against unarmed, peaceful protesters. I would like to personally express my deep gratitude to lead co-plaintiffs Alexis, Brittany, and Kira for their testimony and hard work in getting the TRO issued. Nothing but respect and love for you all.

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An Education in Class

"Education," 1890, by Louis Comfort Tiffany and Tiffany Studios.

“Education” (Chittenden Memorial Window at Yale), 1890, by Louis Comfort Tiffany and Tiffany Studios.

Dedicatory preface: This post is dedicated to the anonymous steel worker from Worcester, Massachusetts, who helped me get to New York City in September 1998. You brought me to the bus station in Worcester and made sure I had cigarettes (I’ve since quit smoking—don’t worry!), snacks, and maybe $20 cash. You did not harm me. You could have taken advantage of me, and you did not. I asked you how I would pay you back and you told me: “Just dedicate your first movie to me.” Spoiler alert: I did not become what I thought I would become back when you asked that I dedicate my first movie to you. I am not a filmmaker. My journey, of which you were an integral part, is chronicled in the post that follows. You carried me on one leg of it, and eventually—after many twists and turns—I emerged a college professor. I dedicate this story—the story of my education—to you, Sir. Thank you.


Part I.

I am here today because a total stranger paid for my education, to the tune of nearly a quarter of a million dollars. That’s what I estimate it cost my patron—an individual unrelated to me by blood or marriage—to fund me through a B.A., an M.A., and all but the last two years of my Ph.D. Because of this financial support, I managed to complete an education with only around $10,000 in student loan debt—30% less than the national average in 2012. More importantly, I managed to actually complete my education.

But see, I’m one of the lucky ones.

I come from a lower middle class background and finished high school in the 90s—before prestigious Ivies like Harvard began offering free rides to students from families with annual incomes under $60,000. 

College should have been out of reach for me, and were it not for my patron I would not even have finished the Bachelor’s, challenging as it was to do manual labor (waiting tables, cleaning houses) full-time while attending college full-time and maintaining a GPA high enough to retain the modest financial aid for which I had been deemed eligible. In fact, I think my fate would have been quite similar to that of the working-class students interviewed by Jen Silva for her study Coming Up Short: Working-Class Adulthood in an Age of Uncertainty (2013, Oxford UP). Most likely I would have floundered for years at low-skilled jobs offering poverty wages, barely able to make ends meet and completely unable to afford an education. Or perhaps I would have taken on a massive amount of student loan and credit card debt, only to find that I was unable to keep up with the monthly payments. (As it is, it is taking me years to pay off the relatively small amount of debt I have accrued.)

When I think about what could have been, the alternate universe of my life looks pretty bleak. And it’s unfortunately not at all difficult for me to imagine this parallel universe because many of my friends—peers from similar lower middle class or working-class backgrounds—are living it as we speak. (There but for the grace of my patron go I…)

I’m not more intelligent than these friends. Nor am I more “deserving” than they. Nor harder working—no. What I am is unfathomably, improbably, unbelievably lucky, and this is what I remind myself of daily.


Part II.

"Taft Public Library and Mendon Town Hall, MA," by John Phelan.

“Taft Public Library and Mendon Town Hall, MA,” by John Phelan.

As far back as I can remember, the only thing I wanted was an education. I craved books like most kids crave toys or video games and would beg my parents incessantly for more, more, more. I’d spend hours every day reading and writing, and by junior high was easily devoting up to 9 hours per night studying in our basement. At parties and family functions I was reluctant to socialize, preferring instead to shut myself away in the silence of coatrooms and read.

My maternal grandmother, a secretary at Brandeis, always spoke in glowing terms about faculty and grad students at her institution, and though she died when I was only 13, her profound respect for the professoriat made a lasting impression. I wanted so very much to be like the professionals she admired.

My family’s background was and remains solidly lower middle class: my relatives are for the most part honest people who work hard—albeit at low-paying, unskilled jobs. We wait tables, sling retail, work in fast food chains. Some family members hold white collar office jobs or are employed in health care as nurses. To the best of my knowledge, nobody’s household income comes close to hitting the six-figure mark—including those comprised of at least two adults working full-time.

The town I grew up in is mostly lower middle class as well. A small, rural community that has doubled in population from approximately 3,000 to 6,000 since my childhood, Mendon boasts one of the nation’s last remaining drive-in movie theaters. It’s one of those towns that nobody (including Massachusetts natives) has ever heard of and that requires speakers to geographically situate it relative to larger surrounding towns in order to communicate where, exactly, it is located: “You know: near Milford, Uxbridge, Hopedale….” 

“Oh, OK.”

Like most children from Mendon, I attended H.P. Clough elementary, Miscoe Hill Middle School, and Nipmuc Regional High School. Because our town was so small, students were grouped together beginning in the 5th grade with children from the neighboring and slightly larger town of Upton.

Many of us did odd jobs under the table in our spare time. I cleaned houses for cash in elementary school and started babysitting a local 2-year-old when I was 12. When I turned 14, my mother marched me into Nipmuc to have my work permit authorized and then dropped me off at a coffee shop called The Donut Hole—my first “real” job. Within a few months I was opening and closing the store and performing the duties of a manager. I was 15. I never questioned any of these arrangements. That I had to work—and work hard—was something my parents had always impressed upon me, and the environment in which I was raised left me with the idea that all children must, like me, work.

The only characteristic that distinguished me from my peers was my hunger for education. I was not the brightest student in my school—and in fact I am quite sub-par when it comes to math—but I probably did have the most intense work ethic. In 4th grade I would lug a giant red dictionary on the school bus and read word definitions, in alphabetical order, during free periods. Around this same time my mother returned to college at Framingham State in an effort to complete her B.A. I remember pilfering her Psychology 101 textbook, with its forest-green cover, and schlepping that to H.P. Clough as well. My mother didn’t finish the degree, but she kept that textbook, and when I close my eyes I can still visualize many of its pages.

When your parents aren’t doctors, lawyers, CEOs, or oil magnates, they tend to tell you that “education is important,” but other than that they’re fairly hands-off. Mendon, Mass.—unlike, say, Milton—is not some hotbed of scholastic and professional competition. Part of this is class-related, and part of it was the result of growing up in the 80s and 90s, before the onset of American culture’s feverish obsession with standardized testing and “prestige” [1]. What this means is that children weren’t pushed or coached and it was generally expected that each child would achieve according to his or her “own potential” and drive. As kids, we were allowed to be mediocre—even fail. I have mixed feelings about the culture in which I was raised. Because I was a bright and exceedingly stubborn child, the lack of deep parental involvement motivated (forced?) me to figure out how to navigate the system independently. It worked out in the end primarily because I am unreasonably strong-willed. Most children are not quite as headstrong; I watched a lot of people brighter than me give up when faced, over and over, with a lack of scaffolding to help guide them through the educational labyrinth.

Silva eloquently captures the kind of culture to which I am referring in the following passage of Coming Up Short:

The responsibility for deciphering the rules of the game […] fell squarely on Alyssa [one of Silva’s research subjects] and her family—none of whom had the knowledge to fill out the FAFSA. (88)

Silva’s point, and mine, is that when your parents don’t understand how to negotiate the college prep and admissions system, they cannot transmit those skills (which they lack) to you—their child(ren). Children of working class and lower middle class parents are therefore left struggling to navigate the maze by themselves, often cobbling together knowledge gleaned from high school guidance counselors and wealthier, savvier peers. In order to be successful in this context, a student must be both reasonably intelligent and unreasonably motivated. Most adolescents—indeed, most human beings—are not the latter.


Part III.

"Phillips Exeter Academy Panorama," by E. Chickering & Co.

“Phillips Exeter Academy Panorama,” by E. Chickering & Co.

I’ve never claimed to be a reasonable person; I’m often contrary, willful, rashly audacious. I’ll never be described as someone “everyone loved.” I am just not that person. These character faults, though not laudable per se, were what enabled me to succeed. My parents and local culture may not have pushed education, but I most certainly pulled for it—kicking, screaming, and (when necessary) dragging everyone else along with me in my ferocious pursuit. At age 13 and without parental assistance, I applied for and was accepted into Phillips Exeter Academy’s summer program. Somehow I managed to persuade my parents to shell out the tuition—a cost which, in retrospect, we probably could not afford. [2]

Summer 1994 thus marked the beginning of my true education in class. I’m sure it must be the same for the wealthy kids: when you’re surrounded by wealth, you assume everyone is more or less in the same socioeconomic bracket as you. Or perhaps wealthy children are inculcated with a more nuanced understanding of class divisions than working and lower middle class children. I have no idea.

My life has been spent on the periphery of the wealthy—watching, listening, studying, and sometimes serving them, but never really being included as part of their social sphere. I suspect I’ve had more opportunities to rub elbows with the wealthy than most other members of my socioeconomic class, simply because I’ve always been able to get into their schools.

Yes, I said “their schools.”

I expected Exeter to be a place full of kids like me. I expected to be surrounded by geeks and dorks—kids enthralled by and enthusiastic about learning. I’m sure I enjoyed my summer at Exeter, if the four handwritten “Instructor’s Reports” are any indication. According to the official paperwork, I completed “Honors work” in “Worlds of Fantasy” and “Journalism” but merely “Satisfactory work” in “First Year Algebra.” [3] The journalism instructor, in particular, seemed pleased with my performance. 

The interesting thing about Exeter is that my memories of the school have exactly zero to do with any of the courses I took. Reading the evaluations of my performance is like perusing reports on some other person; I have no firsthand memory of anything discussed. I believe the journalism instructor when he indicates that I “wrote six articles on a variety of subjects, and four of them made page one [of The Exonian, the student newspaper].” He further describes some of the articles, including the topics with which they dealt. Yes, I am positive I did write them, but no—I have no recollection whatsoever of the experience. [4] This is unusual for me, but there is a reason for it. My only real memories of that summer are of the painful realizations that a.) socioeconomic class existed and b.) I was situated towards the bottom rung of the ladder.

The key player in my teenage imagination at Exeter was a young man named Fabian Basabe. Fabian has appeared semi-regularly in the press over the past decade, often bearing the dubious title of “the male Paris Hilton” and waxing lyrical about how he “doesn’t work” because it’s “not interesting.” Given that we don’t exactly run in the same social circles, I never had the opportunity to interact with Basabe during his New York “It boy” phase of the early 2000s, which began when he was “dismissed” from Pepperdine University for “submitting a paper he’d purchased on the Internet,” and ultimately reached its peak with a one-episode stint alongside Kourtney Kardashian on the failed E! reality show “Filthy Rich: Cattle Drive.” The press routinely describes Fabian as “a sweetheart,” and I have to admit that my memories of him as a person are not negative. Even in his teens he was charming and friendly—although he did not associate extensively with students outside his socioeconomic class while “studying” at Phillips Exeter. I would observe, transfixed, as Basabe paraded around campus with his entourage of fellow rich kids. We all liked Fabian—“Faby-Baby” as some of the girls called him—but we kept our distance, like commoners in the presence of royals.

Sometime during the summer, Basabe and his colleagues were all flying to some sort of luxury destination (the Hamptons, or something) to party for the weekend, and I called my parents to ask if they could send me some money so I could go. All of the kids had gotten together and worked out the total cost of the weekend, as well as the individual cost of attendance for each person’s transportation, food, and so forth. This information had been transmitted throughout campus via word of mouth. In theory, the party weekend was “public,” but in practice it was reserved only for those with enough parental cash to enjoy the festivities.

My phone call to my parents was not bratty or demanding—I swear. It was a call born of genuine ignorance and naïveté. It truly did not occur to me that we would be unable to afford this weekend. All of the other kids were going, so naturally I assumed that I, too, would go. My parents had to explain to me that we could not afford it. I asked: “How come all the other kids can afford it?,” and I distinctly remember my mother having to spell it out for me, slowly and carefully: “The kids at that school are extremely wealthy, Valéria. We are not like them. We can’t afford this.” It was the first time I had been in an environment comprised largely of people above my own socioeconomic class, and the knowledge came as a shock. 

Another cataclysm involved my wealthier peers’ consistent abuse of drugs and alcohol while at Exeter. The weekend parties they held on and around campus were sustained by freely flowing alcohol, copious amounts of weed, and probably harder drugs to which I was mercifully not exposed. The eldest participants in the summer program were around 18—meaning that, none of us were old enough to legally drink. Yet these kids seemed so casually familiar with drugs and alcohol. They weren’t even “experimenting”; they appeared well-versed in the recreational usage of a wide variety of substances. Parties, social events, opulent displays of wealth, and substance abuse seemed to be their primary areas of focus while at Exeter.

These kids were not like me. They had not muscled their entrance into this school, intellectually or otherwise. They were not in awe of the beauty of the campus or our exposure to new forms of literature. Their parents had arranged for them to attend. Some resented it, while others dutifully complied with the arrangement. But they were not like me. The realization was both confusing and devastating.

Imagine, for a moment, that you are 14 years old. Imagine that Fabian Basabe and his ilk are responsible for inaugurating your education in class. Imagine coming to the understanding, over 5 weeks, that there is an entire stratum of society that both effortlessly possesses and seems totally indifferent to the one thing you so cherish—the very thing for which, even at your tender age, you have already sweated, begged, pleaded, and battled to obtain access. Imagine emerging from those 5 weeks knowing in your gut that you were to face many, many more years of struggle, just to get a taste of what Fabian Basabe had already been handed dozens of times for free. Imagine realizing that merit meant nothing, or almost nothing, and money everything, or almost everything.


Part IV.


The author in Fall 1998, commuting to or from NYC as described in Part V of this post.

Fast-forward several years. While Fabian Basabe was getting expelled from multiple boarding schools in Florida, I was still fighting for my education. I had applied for and been accepted into Phillips Exeter. Not the summer program. The regular program—the real deal. It meant so much to me that, nearly 20 years later, I still have the acceptance letter (as well as the envelope in which it arrived) preserved in almost pristine condition:


Accepted….sort of.

I was awarded a “half scholarship,” meaning that my parents were expected to pay 50% of the cost of tuition for Phillips Exeter. Currently annual tuition for Phillips Exeter hovers just under $50,000 and students whose parents earn $75,000 or less receive a free education. At the time I was applying, tuition was probably about half what it is now, but admissions was far from need-blind. The percentage my family was expected to pay was too much: “If we pay for Exeter, we won’t be able to afford to pay for college,” explained my parents. I had been accepted on merit but barred from attending because I was not born rich.

But again, I am stubborn.

I made my parents a proposal: help me find a way to pay for Exeter, or let me go to college two years early. They refused. I argued. Bargained. Yelled. Fought. Enumerated lists of reasons why my proposal was both reasonable and worthy of consideration. They refused, then refused again, and again. But I did not budge. Over and over, I demanded my education. I would not budge.

And so it was that I entered college in Fall 1996, at the age of 16.

Supposedly I was at Framingham State College (now “Framingham State University”) as a Dual Enrollment student, but I never returned to high school, instead taking on a full-time course load and refusing to look back. [5]

This does not mean that my entrance into college was smooth. Because I was a minor, I was not allowed to live in the dorms. Because at the time my family was collapsing (parents divorcing, father violent and abusive, mother clinically depressed—I won’t bore you with personal details that would distract from the focus of this post), I ended up semi-homeless and homeless much of the time while attending FSC. I ran away repeatedly to Boston and slept on the street or in youth homeless shelters and drop-in centers. I slept on couches in unlocked campus buildings. Occasionally someone in Boston would pick me up off the street and take me home for a day or two, and sometimes older students at FSC—aware of my situation—would sneak me into their dorm rooms for a night or two. Most of the people who took me in were caring and did right by me. One memorable week, I stayed at the home of Cambridge Mayor Denise Simmons. [6]

Excluding the semester I intentionally failed one of my classes (long story, and I don’t recommend that anyone follow my example)—I did well, earning mostly As and a smattering of B+s. To this day I remember an incident in a huge Biology I lecture which was team-taught by three professors: Dr. Beckwitt (unforgettable), Dr. Spence (I think?), and Dr. Snyder. Dr. Beckwitt was one of those professors who rewards hard work and displays of brilliance but seems to have limited patience for any kind of undergraduate bullshit. I’d picked up on this from the start of the semester and wanted to impress him. So I waited, waited for an opportunity. Finally, one day, Dr. Beckwitt was lecturing on sickle cell anemia and how it was caused at the genetic level by a substitution of amino acids. Suddenly he stopped, mid-sentence, and scratched his head. “Hmm….but I can’t recall exactly what the substitution involves.” He turned to his colleagues: “Dr. Spence, Dr. Snyder, do you remember?”

None of them did. 

From the back of the lecture hall, I raised my hand. I looked exactly like the photo of myself posted above. I was a scrawny 16-year-old raver kid with oversized pants, fire-engine red hair, and seven facial piercings. I chain-smoked outside the campus buildings. No one took me seriously….until I opened my mouth. Dr. Beckwitt squinted at me, then (slightly exasperated), asked: “What?”

“Dr. Beckwitt,” I offered, “Valine is substituted for glutamic acid.” [7]

Dr. Beckwitt looked at me as though I’d descended from the back rows of the lecture hall and punched him square in the nose in front of over a hundred undergrads.

“Oh,” he said, “….how did you know that?”

Students in the rows in front of me turned around, squinting and craning their necks to see what was going on.

“It’s on page 387 of the textbook, Dr. Beckwitt. I memorized it. I memorized everything. If you want, I can get my book and show you the page. I know I am right.” [8]

“No, no—that won’t be necessary.”

He knew I was right, too. After that, I got regular tutoring gigs and was paid hourly by my fellow students in exchange for assistance with Biology, English, and Spanish. And yes, I memorized the entire Biology textbook. My exams from that semester reflect that I was quoting from memory in essay responses. It is a skill I can still deploy today if I so choose, though I use it less now that I am out of school. [9]

While at FSC, I met two people who were to change my life forever, for the better. One of them was a young man named Kyle Mercury, and the other was a slightly older fellow student named Deanna Angelo. Deanna was 19 and I was still 16 when we met. We’d seen each other around campus and were mutually intrigued. Both of us had fire engine red hair, tattoos, and piercings. Neither of us quite fit in. Deanna and Kyle, like me, came from working class backgrounds (although Kyle’s father was somewhat wealthy). One day Deanna asked me for a cigarette, and I gave her one. I assumed she’d take it and walk away, but instead she sat down. We began to talk. We talked for hours. We skipped all of our respective classes that day. She took me home with her. And since that day—to this day—we have been inseparable. 

Because I was a minor, I could not work full time. I did work part-time as a dishwasher in a kitchen. I helped Deanna out as much as I could in exchange for being allowed to live in her apartment. I remember that I did the dishes (she hates washing dishes). Deanna would cook us Kraft macaroni and cheese out of cardboard boxes. Deanna taught me how to do the laundry. Deanna cared for me, raised me during a time I had been abandoned. I write this post now, in my mid-thirties, and I realize that Deanna was a 19-year-old raising a 16-year-old. And I realize now the magnitude of that, the responsibility. But we were working class kids making do with what we had, and this is the kind of thing that working class kids and poor kids do. Together with Kyle (my first boyfriend), we eventually formed a sort of trifecta.


Part V.



I took the SATs twice, with no prep. My best score was a 1310 (out of a possible 1600). I applied to only one school, for entrance in Fall 1998: NYU (Tisch School of the Arts, Film & Television).

I was accepted. What I remember most about this milestone was my mother commenting that my Aunt Elvira’s friends’ daughter, who attended Milton Academy, “also applied and she didn’t even get in!” [10]  By now I understood, to some extent, that the system was rigged. The fact that a wealthy child from a wealthy family who attended a wealthy prep school failed to get into NYU (but I got in!), was a delicious revelation. Everyone knew that acceptance to a “good school” like NYU was based on income rather than merit.

And yet, somehow, I got in.

Again, there was financial aid. Again, it covered about 50% of NYU’s annual tuition, which at the time was over $20,000 a year. I remember my mother co-signing on loans (but not being happy about it), and I remember being aware that I was not allowed to live in the dorms (I think because it would have prohibitively increased the cost of tuition) and would have to work full-time in order to support myself and pay my own rent, food expenses, etc. Despite these challenges, I remained unfazed. I was perfectly willing to work hard, and I wanted to attend NYU. Surely everything would be OK.

Once the paperwork was in order though, the real obstacles quickly became apparent.


Part VI.


Butch and Annie’s Plaza, Worcester, MA.

It was only a day—maybe two—before the start of classes. It was Fall 1998. I was 18 years old. I was 18 years old and, on paper, I was enrolled at NYU’s Tisch School of the Arts in New York, New York. Deanna and I lived in an apartment on Hooper Street in Worcester, Massachusetts—about two blocks from a small shopping area called “Butch and Annie’s Plaza. 

The details elude me, but it was a money issue. (It has always been a money issue.) I was a student at NYU. This, I knew. I had already fought ferociously for a number of years to get there. This, I knew. I did not have enough money to get to New York City, nor a way to get to New York City, and classes were about to start. This, too, I knew.

I got into NYU but I could not get myself from Point A (Worcester, MA) to Point B (Manhattan). I had turned 18 in April and it had just become legal for me to work full time, and, while I did work, I had no savings because Deanna and I were barely able to cobble together money for basic living expenses even with both of us working full time. I could not afford to get to New York because I had no money.

Undoubtedly I’d already spent days wracking my brain, agonizing, trying to figure out what to do and how to get where I needed to be and panicking over the fact that classes were about to start and I wasn’t there. And somehow I ended up sitting on the curb in front of the convenience store (now a Dunkin’ Donuts) at the edge of Butch and Annie’s Plaza, and somehow I ended up sobbing in public because I could not figure out how I was going to pull this one off. I put my head down on my knees and cried. It was not the first time, and it would not—not by a long shot—be the last time I would openly bawl in public because of a desperate situation. People came and went. The sun got lower in the sky. I have to get to New York. I have to get to New York. Fuck.

It was then that I heard him.

“Hey—why are you crying?”

I looked up and saw a man emerging from a large truck. He was wearing jeans and a sweatshirt stained with what looked like black grease. 

“Because I’m supposed to go to NYU and my classes start in like 2 days and I have no way to get to New York.”

“Well, I can help you get to New York.”

I hesitated. 

“Look,” he said, “either you trust me or you don’t.” He opened the passenger side door of his truck.

For a fleeting moment I hesitated. I usually listened to my gut when it came to trusting people (or not), but with this guy I wasn’t sure. What if he murdered me and dumped my body in a ditch somewhere?

He touched the passenger side door again. Something in me said: go.

“Wait,” I said. “I’m coming.”

“Come on. I’ll take you to the bus station.”

“But I don’t have any money.”

“Don’t worry about it.”

On the way to the bus station we stopped at a gas station. The man put gas in his truck. “You smoke?” he asked me. I nodded. “What brand?” 

“Camel Lights,” I replied.

The man went into the gas station to pay for his gas and emerged with a plastic bag. In it were a couple of packs of cigarettes—my brand—as well as some snacks and drinks.

“What’s this?” I asked him.

“Well—it’s about a four hour bus ride, right? I figured you’d need these for the trip.”

He asked what I planned to do, and I told him I wanted to be a filmmaker. He bought me a one-way bus ticket to NYC and handed it to me along with the bag of snacks and smokes. He gave me around $20 cash. I didn’t even know his name. He never told me his name. I asked how I could repay him and he told me: “When you make your first movie, just dedicate it to the anonymous steel worker from Worcester who got you where you needed to go, OK?”



Part VII.

I got where I needed to go, and once I did there were additional challenges. Kyle and Deanna had decided to move with me to New York, but we didn’t have an apartment. For the first few months of my education at NYU, Kyle and I would stay in a cheap, roach-infested motel room in Chinatown during the week (for my classes) and then drive back to Massachusetts on the weekends to save money. I had no stable place to live, let alone to study. We were spending up to 15 hours per week commuting between Massachusetts and Manhattan.

Since I couldn’t afford my textbooks, I shoplifted the majority of them from a Barnes & Noble.

I made it to my first day of classes, having totally missed orientation and all of the other activities in which incoming freshmen typically partake at the start of their college experience.

Eventually Kyle—with the signature of his father, who agreed to act as our guarantor—managed to secure us an apartment in Brooklyn. We were all broke. Deanna and I, down to literally our last dollar, got hired as waitresses at a restaurant called Wilkinson’s Seafood on 84th and York. (It no longer exists). On our first scheduled day of training we realized we didn’t have enough money to ride the subway, so we jumped the turnstiles and got ticketed by a cop. We made it to work, though.

I spent three miserable semesters at NYU. Even with a stable place to live, the entire enterprise was a disaster. I worked full time at Wilkinson’s and maintained a full time course load at NYU (as I was required in order to retain my scholarship). I’d attend classes during the day, then head immediately to the restaurant to set up tables in the afternoon and wait on customers until around midnight. At midnight (give or take), we’d “break down” the dining room, cash out, and head home. Adding in the commute from the Upper East Side to Brooklyn, I’d usually get home by 2AM. I’d then catch 2-3 hours of sleep (Kyle would have to force me to awaken by physically propping me upright in the bed because my body was so exhausted that even multiple alarm clocks could not rouse me); get up around 5AM; and do homework for approximately 3 hours before heading to NYU for class. I did this every day and on weekends usually put in overtime at the restaurant. I worked 7 days per week. I did this for nearly two years before it finally broke me.

My situation was probably not unique, although at the time I felt like I was the only one at Tisch in these circumstances. I’ll never forget watching my colleagues in the introductory film and photography classes soar ahead of me with their projects (they didn’t have to wait tables) while I floundered and managed mediocre work at best. I was acutely aware of falling behind.

This was in 1998-2000, but students like me—that is, bright students who do not come from wealthy backgrounds—were evidently still facing the same dilemma I faced at least as of 2004, when the infamous case of the so-called “Bobst Boy” hit the national press. It would not surprise me to learn that, a decade later, there continue to be “homeless” NYU students. I admire Steve Stanzak (the “Bobst Boy”) for publicizing his experience and using that publicity to leverage himself a dorm room. Had I had internet access back in 1998, I likely would have been similarly vocal and perhaps then the outcome of my “education” at Tisch would have been different. But my situation occurred before the dotcom explosion—before anyone had PCs (let alone laptops) or regular internet access or blogs or the ability to draw national attention to one’s plight. So there I was, in pre-9/11 America: funded just barely enough to attend, but not enough to stay. Bright and driven enough to be accepted….sort of. Temporarily. With insufficient financial aid. Able to secure some student loans, but not enough to prevent me from also having to work full time. Drowning and yet thrashing mightily—violently—to remain afloat, enrolled, and in good standing.

At Wilkinson’s Seafood, on the monied Upper East Side, I was a “black tie” waitress (and eventually hostess). What this means is that I did formal waitressing in an upscale environment for wealthy customers. During my time at Wilkinson’s, my “regulars” included baseball players Keith Hernandez and Rusty Staub; one of the writers of Law & Order (never knew the guy’s name, just what he did for a living); and Barbara Feldon, who played Agent 99 on the TV show “Get Smart” (she is a vegetarian, or at least was when she frequented our restaurant). One memorable evening I waited on Martha Stewart, who is exactly as intimidating as one would expect. 

Life below stairs as in the Victorian era still exists, I can assure you. At the restaurant, the waitstaff had an entire universe of our own that stood parallel to—yet completely hidden from—the “front of the house” dominated by our upper-class customers. Since most of our days and evenings were similar, and since I was mind-numbingly sleep-deprived, I don’t remember many of the specifics of those two years. I recall quite a few shifts spent covering the dining room along with a young man named Marcelo, with whom I would aggressively compete for customers’ leftovers. The unspoken rule among waitstaff is that whoever buses a table once the customers have departed gets to eat any leftovers that remain on their plates. This may sound disgusting, but what you need to understand is that waitstaff spend 8 or more hours at a time on our feet, running back and forth, upstairs and downstairs, etc. without stopping. Often we are given very little time to eat, or no time at all. Add in the fact that Marcelo and I were in our teens and still growing, and therefore frequently very hungry. At Wilkinson’s the entire staff would eat together at around 5PM, before the evening’s work began, but by 10PM (after lots of running about), Marcelo and I would be famished. Other than the meal at the start of the shift, we were not allowed to eat food from the kitchen. Thus, our customers’ leftovers were the only food available to us. It was eat leftovers off their plates or wait until we got home (well after midnight) to eat again—so we fought fiercely to bus the tables and gain access to leftovers. A dessert for which we tussled with special intensity was the chocolate mousse cake with raspberry sauce. I think I “won” about half the time.

It is only in retrospect that I grasp the extent to which socioeconomic class divided me from the people on whom I waited. One evening an older man was eyeing me studiously from head to toe while he and his party awaited their table. After examining my legs, arms, torso, and so on, he looked me in the eye and asked: “Would you please open your mouth?” I thought the request odd but didn’t dare refuse; my boss was standing within an earshot and, as waitstaff, we were trained to always comply immediately and unquestioningly with anything our customers might request. I opened my mouth. The man studied it, asking me to bite down so that he could more clearly see my teeth. Finally, he turned to my boss and gleefully proclaimed: “She has great breeding!” The man had examined me physically—as one would a pedigreed horse or dog—before deciding that he wanted me to serve him and his family dinner. To him, I was little more than chattel simply because I had not been born rich.

When I reached my breaking point, I made one final attempt to remain at NYU. I knew that I couldn’t go on working the number of hours I had been working and sleeping as little as I had been sleeping. I could feel that something was going to give. Yet I wanted, with every fiber of my being, to remain in school. My education, so hard won, was slipping through my fingers. I hoped that I could receive some guidance from administration—perhaps suggestions for additional financial aid options or scholarships, something that would enable me to cut down my work hours and allow me to focus more on my studies. I made an appointment with someone who was probably a Dean or similar at Tisch, and this is what I recall about the appointment: he would not meet with me in his office, but instead insisted he had to go and only had time to speak with me in the elevator. I thanked him for the limited time and walked with him to the elevator. Briefly, I explained my situation and asked if he could provide any guidance, suggestions, or even the name of someone else affiliated with my school with whom I could speak. 

As the elevator descended, he looked at me and flatly declared: “You can’t work and go to NYU film school.” [11]

The elevator stopped and made a characteristic “ding.” The doors opened. He turned and walked away.

An NYU administrator to whom I’d turned hoping for advice had just confirmed what I’d known deep inside all along: I was not welcome at NYU. I did not belong there. Sure, I’d gotten in—but it was clearly some sort of joke, or trick, or mistake. My classmates did not have to work; they belonged at NYU. Me? No—I did not belong.

Not working was not possible. Since the administrator had insisted I couldn’t “work and go to NYU film school,” the only course of action left to me seemed clear. I had to work. I had always had to work. There was no way for me to not work.

Two weeks later, I dropped out of NYU. 


Part VIII.


Left to right: the author defending her Ph.D. dissertation in May 2013, with (L-R) advisors Victor K. Mendes and Anna M. Klobucka offering feedback during the defense.

A few months after dropping out of NYU, I took my life savings of $2,000 and a backpack and boarded a plane to Portugal. I was fluent in Spanish but did not speak any Portuguese. I did not know anyone in Portugal. I had never been there before. What I knew was that somehow, despite my best efforts, my dream had fallen apart. What I wanted was to leave the tatters of that dream behind and start over someplace new.

I ended up living abroad for 16 months, during which time I became fluent in Portuguese. I arrived back in New York on August 2001—a month before 9/11. I was in Weehawken, NJ on the day of the attacks and watched the towers fall from across the Hudson River. For two more years I continued working odd jobs, low-class jobs, whatever jobs I could find. I waited tables, washed dishes, cleaned houses. Deanna and I continued to eat Kraft macaroni and cheese out of cardboard boxes and struggle to make ends meet. I gave up on my dream of an education because it seemed unattainable. I resigned myself to the fact that I was never going to finish the Bachelor’s degree I’d started at 16. 

What changed for me was nothing that I did. I did not suddenly work harder, or get richer, or become more intelligent. What happened to me was a stroke of luck rarer than being hit by lightning. My patron. Long after I had given up, my patron found me and offered to fund my education.

The problem with this story is that what happened to me does not happen, and that is why I am writing this post.

There have been a number of articles lately in the New York Times about how colleges and universities have done little (or nothing) to improve poor students’ access to higher education, and/or how the culture of higher education continues to be stubbornly “upper class,” leading poorer students to struggle academically and socially in college and university environments. Around the country, many prestigious universities—including the one where I currently teach—are making a greater effort to engage in meaningful conversations about “socioeconomic diversity.” Yet the fact remains that not just poor students, but even middle class students—and I don’t mean that euphemistic use of “middle class” that abounds at elite universities, where families making $250,000+ a year are regarded as “middle class,” but rather actual middle class students, as in those from families whose income falls in line with the median household income of around $50,000 per year in 2013—are still being shut out of higher education.

My point is that I was lucky in so many ways from the get-go: I was born reasonably intelligent, received a decent public school education in Mendon, and was blessed/cursed with an irrationally stubborn streak to my personality. Despite the many hardships I have endured in my life, I was not malnourished in childhood (for example), nor did I grow up in a neighborhood plagued by gang violence or drugs. Yes, I come from a lower middle class background, but I still enjoyed enough advantages early in life that I was able to dream of an education in the first place and take steps (however unsophisticated or faltering at times) towards achieving that dream.

And yet I still would not have made it without my patron.

That part is worth repeating: I still would never have made it without my patron.

There are not enough wealthy patrons in this country—nor are the vast majority of wealthy would-be patrons generous enough to consider funding the education of an underprivileged college student—to compensate for the degree of inequality that persists deep within our educational system. Barring a few exceptions, colleges and universities in the U.S. are staffed, run, and funded by the wealthy—people who came from upper-class families, have enjoyed lives of comfort and privilege, and now seek to pass those benefits on to fellow members of their own socioeconomic class, i.e. – the new generation of wealthy and upper-middle-class college students. The American academy has always been, and unfortunately remains, far more of an aristocracy than a meritocracy. Since education is associated with better prospects of upward mobility, access to it is critical in order to reduce socioeconomic inequality, but with the costs of college education rising at an obscene pace, all but the wealthiest families are being priced out.

The question I am compelled to ask, then, is this: why should it take an actual miracle for any bright, motivated, hard-working young person from one of the wealthiest nations in the world to have access to a quality education?

Make no mistake: the luck that befell me was a miracle. A miracle—not a success story. A success story would be if every bright young person from a disadvantaged background had a patron like mine. Better yet: a success story would be for such patronage to be unnecessary.


[***FIRST DRAFT: Wednesday, September 24, 2014. 03:44H CDT***]



1 – Note Milton’s median incomes compared with Mendon’s (from the towns’ respective Wikipedia pages) via links above.

2 – Tuition for summer 2014 is around $8,000, but I recall it being less than half that amount when I attended in 1994. Of course, that was twenty years ago. At today’s price tag, my parents would not have been able to send me to the summer program at all.

3 – See? I told you I’m sub-par in math.

4 – I went so far as attempting to pull archives of my work from The Exonian, but their online database does not go back far enough, unfortunately.

5 – For some reason this cost my family nothing. I cannot remember why, although I imagine there is some sort of program in place. I know that we either did not pay tuition to FSC or paid so little as to make it a token (and affordable) amount.

6 – One of her daughters is approximately my age and brought me home. I am pretty sure there are photos of me somewhere holding signs campaigning to re-elect Mayor Simmons. I have hazy memories of doing so during the time I spent at her home.

7 – Nope, I didn’t have to look this up. It is a fact I will never forget specifically because of this classroom incident.

8 – This is not the actual page number. That, I did forget.

9 – No, I do not have a photographic memory. I devoted hours to memorizing individual textbook chapters for my science classes. It was difficult and time-consuming, but worth it when I performed well on my exams.

10 – “Aunt Elvira” is not my blood Aunt but is close enough with my mother that my brother and I were raised to address her as “Auntie.” She lives in Milton and was one of the sources of my knowledge, growing up, that Milton was “where the rich people lived.”

11 – This man is fortunate that I remember neither his name nor his position, because I am no longer a powerless, timid undergrad, and I certainly would have something to say to him now regarding that episode in the elevator.

Works Cited

Silva, Jennifer M. Coming Up Short: Working-class Adulthood in an Age of Uncertainty. Oxford: Oxford UP, 2013. Print.


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Complicating Disability Studies’ Relationship to Medicine

One of Disability Studies’ major hang-ups is its default position with respect to the field of medicine and—by extension—with medical practitioners. The adversarial stance of DS towards medicine (and doctors) stems largely from the former’s repudiation of the medical model of disability, according to which—as defined by Disability Studies scholars—individual disabled people are identified as “problems” to be “fixed” or “cured.” [1]

The graphic below, borrowed from the website of the Democracy Disability and Society Group, nicely illustrates the medical model of disability as theorized by DS scholars and activists:


Image credit Democracy Disability and Society Group (ddsg.org).

Before I dive into my discussion on DS’s positions vis-a-vis “the medical model,” I’d like to clarify that in my own work I make no distinction between “impairment” and “disability,” preferring instead to utilize “disability” to designate the complex matrix of physical/material and socio-cultural phenomena that together produce conditions of disablement for some people. [2]

The main issues that I have with Disability Studies’ framing of “the medical model” in its current incarnation is that it presumes the following:

  • Medicine and physicians are always paternalistic.
  • Recipients of “medical care” are always “passive” and “disempowered.”
  • There is no gray area between the extremes of “cure” and “do nothing” when it comes to medicine.
  • All “medical” care is bad.

It is worth noting that the definition of “medical model”—a term coined by psychiatrist R.D. Laing to describe the working model for training physicians and from which the related “medical model of disability” derives—is one articulated in the 1970s. It therefore bears little resemblance to working models employed by physicians in the 21st-century, especially newer generations of doctors who have moved away from paternalistic attitudes and tend to view them as outdated and ineffective. [3]

The Democracy Disability and Society Group graphic includes both “impairments” (aka “disabilities”) and “chronic illness,” but I’m puzzled as to why they occupy separate categories considering chronic illnesses are in fact disabilities. A disability (again, the graphic uses “impairment” to denote what I call “disability”) is quite simply a mode of functioning that differs from that of the majority of people. For instance: if the majority of people have 2 legs, then having only 1 leg is a “disability” because it involves a physical form (and consequently a mode of ambulation) that differs from that of the majority of the population. If most people do not perceive sights and sounds as overstimulating but someone with Autism does, then Autism is a disability because it involves sensory/cognitive processing modes that differ from those of the majority. It logically follows that if most people have immune systems characterized by a common baseline level of inflammation, people with immune systems characterized by higher-than-average inflammation levels (manifesting in a variety of conditions with names like MS, Rheumatoid Arthritis, Chron’s, etc.) are configured immunologically in a way that differs from the majority of the population and consequently must operate differently from their immunologically “standard” counterparts. In other words: yes, chronic illness (defined as “ongoing immunological inflammation that differs from that found in the majority of the population”) is a disability.

A couple of factors contribute to the “classical” separation within DS between “chronic illness” and “disability.” As shown in the graphic, disability is traditionally viewed as a “physical, mental, [or] sensory” difference, but overwhelmingly “mere” physical differences are prized, with the “ideal” disabled person being an “otherwise healthy” individual with a motor impairment (i.e. – missing limb, spinal cord injury, war trauma, etc.) necessitating either a wheelchair or prosthesis. Within the hierarchy of disability—yes, there is a hierarchy—Deaf and blind people are also prized, since they are “otherwise healthy.” [4] A quick Google image search of the keyword “disability,” while admittedly not scientifically rigorous, provides a terrific example of the hierarchy of disability at play.

My proposal is that this emphasis on “health” as the standard by which people are included or excluded as “disabled” is as outdated as the paternalistic style of medical practice. By emphasizing the image of disability as “mere” physical variation in “otherwise healthy” individuals, Disability Studies is very problematically helping to enshrine the ideal of “health” as well as colluding in the over-arching cultural rhetoric of “health as morality,” wherein immunological variation is code for “immorality” and even “inferiority.” By clinging to mainstream ideals of “health,” Disability Studies works to achieve greater equality for some disabled people by actively oppressing others. For a field allegedly committed to social justice and equality, upholding this kind of hierarchy of oppression is unacceptable.

Because chronic illnesses are many times imperceptible [5], they tend to be overlooked by the general public (including the DS community), and this lack of perception seems to be the second key determinant—besides the prevailing rhetoric of “health”—in their exclusion from disability and Disability Studies. Everyone knows when a paraplegic person enters the room: he’s using a wheelchair. The Deaf person, in signing, not only communicates but also performs his or her Deafness. The blind person with a cane or dark glasses is identifiable as blind. Being identifiable, even by laypeople, as disabled is important to the validation of “disability identity” precisely because of DS’s internalization of cultural ideals of “health.” Disability Studies’ idealization of “health” and its emphasis on perceptible forms of disability are inextricably intertwined.

In contrast with “classically” acknowledged forms of disability like Deafness, blindness, using a wheelchair or prosthesis, etc., chronic illnesses are often not perceptible to the general public. The crucial point here is that chronic illnesses are frequently only perceived (and perceptible) by *medical* professionals—and even then indirectly, via analysis of complex physical exams, blood work, and so forth. They are thus prone to being reflexively (if incorrectly) “medicalized” by default and rejected by DS scholars and activists as “something other than disability.”

It is both poignant and ironic that, while people with perceptible disabilities are more likely to suffer discrimination and exclusion by the non-disabled public by virtue of their disabilities being perceptible, people with imperceptible disabilities (such as chronic illnesses) are routinely excluded from Disability Studies as “other-than-disabled” or “non-disabled” for (in part) the opposite reason. [6]

Disability Studies’ rejection of “the medical model,” combined with immunologically disabled people’s configuration or placement within that model, contribute to conditions that foster the exclusion of chronically ill people from disability and from DS. DS “needs” to reject chronically ill people because it “needs” to reject “the medical model,” and chronically ill people are stubbornly enmeshed within that model. Chronically ill people are treated by the field as “the problem” in need of “cure” or “fixing”—and this “cure” or “fix” is accomplished through segregation, which takes the form of exclusion from the category of “disability.” Oh what a tangled web we weave when nearly an entire field uses the very same working model it claims to loathe as a virtual blueprint for casting off certain members of its own group! [7] 

Instead of rejecting chronic illness as “not disability” simply because it doesn’t fit into the established paradigm of “the medical model of disability” as formulated by Disability Studies scholars and activists, what if we flipped the lens? What if we asked what recognizing chronic illness as a disability could potentially do for our existing understanding of “the medical model of disability”?

One of the first shifts that would occur would pertain to our views on medicine, medical care, and physician-patient relationships. The experiences of people with chronic illnesses (aka “immunological disabilities”) in the realm of medicine often bear little resemblance to the invariably negative and fatalistic views of medicine propagated by leading DS scholars. For starters, since chronic illnesses are not “curable,” there tends to be minimal—if any—fixation on the notion of “cure” on the part of the physician. When and if an insistence on “cure” does occur, it is generally on the part of the chronically ill person, and my argument would be that it is because that particular person has been indoctrinated into the rhetoric of “cure” by organizations like the National MS Society, the Arthritis Foundation, etc. (and on a larger scale, by contemporary society’s worship of “health”). This is no different than an individual paraplegic person expressing his/her desire to not be paraplegic, or an individual blind person maintaining that they would prefer to be sighted. What is different is that chronically ill people receive far less support from the general public should they choose not to oppose the rhetoric of “cure,” coupled with far more (organizational and social) pressure to adhere to this harmful rhetoric. If charities and organizations such as the NMSS and the AF continue to foster the idea that chronic illness is an “evil” and that “cure” is the only solution, then many chronically ill people will continue to succumb to pressure to internalize these views, even if it proves disempowering and unproductive.

The relationships between chronically ill (aka “immunologically disabled”) people and their physicians are typically long-term ones that emphasize continuity of care, partnership, interdependence, and support. Far from being “passive recipients” of care, we are engaged participants in a dynamic that contributes to our own care and that of others. Far from having “cure” (or even “treatment”) imposed on us, we are empowered to provide input regarding how we would like to approach our disability (and how we would like others, including our doctors, to approach it). Notice that I deliberately use terms like “care” and “approach to” instead of “cure” or “fix.” The latter terms simply fail to describe my experience within the context of medicine, and so I avoid them.

An immunomodulatory drug—the type of drug most people with immunological disabilities use—is best viewed as a prosthesis. In The End of Normal: Identity in a Biocultural Era, Lennard Davis affirms: “A drug would be a prosthesis if it restored or imitated some primary state that appears to be natural and useful” (64). Davis makes this statement in the context of his argument that SSRIs are not “chemical prostheses” for depression, since happiness is not a “primary state” of being and since there is compelling evidence to suggest that SSRIs do not actually work (Davis 55-60). His assertion is relevant to my position in this blog post since, unlike SSRIs, immunomodulatory drugs do “restor[e] or imitat[e] some primary state” (levels of immunological inflammation and patterns of immunological behavior more consistent with those of people without autoimmune conditions) that “appea[r] to be natural and useful” (“natural” in the sense that these altered levels and patterns are consistent with those of people without autoimmune conditions, and “useful” in that they restore—to one an extent or another—“normal” immunological function in individuals with altered patterns of immune activity). Like a paraplegic deciding which model of wheelchair to use or an amputee picking the perfect prosthesis, we with chronic immunological conditions have input into which (if any) immunomodulator to use. If the chosen prosthesis (wheelchair, artificial limb, chemical compound) turns out to be ineffective or uncomfortable, we can choose a different one.

Interestingly, because specialists who care for patients with a particular condition (like Multiple Sclerosis or Chron’s) often maintain active research agendas that focus on the condition in which they specialize, their relationships with patients are best characterized as mutually interdependent. The physician needs the patient (or at least some patients) to consent to participating in clinical trials and providing data that will facilitate the physician’s own research, while the patient needs the physician to not only periodically assess his or her function, but also to prescribe (or provide access to) what are in effect chemical prosthetics that enable “normal” function.

The fact that these chemical prostheses are not accessible without recourse to a physician is arbitrary. By this I mean that it is not difficult to imagine an alternate capitalist universe in which 3D printers (with which wheelchair users can now print portable ramps) or even Braille are made for “limited use only” and controlled as tightly as immunomodulatory drugs are now. Wheelchair users got lucky in that they don’t require a new prescription every 30 days and a “co-pay” (imagine a monthly “user’s fee” for a wheelchair) to access the adaptive technology that is their wheelchair or 3D printer. Blind people got lucky in that they don’t require “prior authorization” to use Braille. There is nothing “special” about immunomodulatory drugs—meaning, nothing inherent in the drugs themselves or even the delivery system—that somehow makes them “medical” in contrast to so-called “non-medical” tech like 3D printers, Braille, and wheelchairs. It just worked out that groups of people figured out how to manufacture, control, and ultimately profit off of immunomodulatory drugs before they figured out how to do the same with Braille or 3D printers. Or maybe they figured out ways to make immunomodulatory drugs more profitable than Braille or 3D printers. It doesn’t matter. My point is that immunological prostheses are no more “inherently medical” than any other prostheses. They became medicalized because certain people figured out how to profit off of them by tying them into the established medical system. This is utterly random.

Given the randomness of the system in place; the evolving role of physicians (with shifts toward “patient-centered care” instead of “paternalistic medicine” and relationships of mutual interdependence between both parties rather than unilateral dependence running from patient to physician only); and medicine’s accepted position as an intermediary which, for some disabled people, controls access to certain types of chemical prostheses that have been arbitrarily classified as “medical,” it seems to me that it might be high time to question and, indeed, to complicate Disability Studies’ relationship to medicine. To move forward with such a paradigm shift, the field needs to stop medicalizing chronic illness. It needs to stop labeling people with chronic illnesses (immunological disabilities) as a “problem” in need of “curing” or “fixing” through exclusion from the category of “disability.” It needs to take another look at the so-called “medical model”—one it mimics in its treatment of the chronically ill while simultaneously decrying as “undesirable” for all other disabled people. To do this, the field will need to confront its existing hierarchy of disability and seek to trouble the notion that a disability must be perceptible to laypeople in order to “count.” But most importantly, Disability Studies will need to acknowledge that its “medical model of disability” no longer corresponds to the out-dated “medical model” of medicine on which it is based—and that the widening gap between the two threatens to quash the growth of the field.

[***FIRST DRAFT: WEDNESDAY, JUNE 11th, 2014. 23:01H EDT***]


1 – I specifically add the clumsy verbiage “as defined by Disability Studies scholars” to emphasize that medical professionals themselves would be unlikely to identify with this view of their own profession. As such, “the medical model of disability” needs to be understood within the context of its formulation by DS scholars and activists. The “model” is not neutral or objective; it is a specific framing of the field of medicine and of medical professionals by people with disabilities and/or their allies, many of whom aggressively oppose any kind of “medical” intervention.

For further reading and some helpful diagrams illustrating differences between “medical” and “social” models of disability, please consult the following pages:




2 – For an expanded discussion of my views on the “impairment/disability binary,” see this thread and this document (especially pages 2-3 and notes on page 20).

3 – The NY Times piece is by a cardiologist who discusses grappling with tensions between paternalism and autonomy, and the Forbes article is by a physician criticizing what she refers to as “dinosaur physicians”—that is “old guard” M.D.s who still practice rigidly paternalistic medicine.

4 – Many Deaf people do not view themselves as disabled, since Deafness can also be conceptualized as a cultural and linguistic difference rather than a “disability” per se.

5 – “(Im)perceptible disabilities” is a phrase coined by Stephanie Kerschbaum as a preferable alternative to the ocularcentric “(in)visible disabilities.”

6 – “In part” because DS’s enshrinement of “health” should not be underestimated as a motivating factor in the exclusion of chronically ill people, either.

7 – When scholars within DS do write about medicine, they tend to focus on eugenics, end-of-life care, and assisted suicide, thereby perpetuating the stereotype that medicine equals “sickness and death only.” See recent work by Lennard Davis (The End of Normal: Identity in a Biocultural Era, 2013), especially Chapter 7 and Tom Shakespeare (Disability Rights and Wrongs, 2006), especially Part II.

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Triggernometry Redux: The “Trigger Warning” as Speech Act


An addendum to my earlier post on “trigger warnings,” inspired by a very late night discussion on Facebook:


The “trigger warning” can be viewed as a speech act. Considered as such, the act it performs is indirectly declarative; it (pro)claims for oneself and/or others the identity of “victim.” Because in the United States, in particular, the identity of “victim” is culturally enshrined, the deployment of the “trigger warning” is in essence an assertion of “moral superiority.” (It functions much like “not having privilege,” as described in Gawker’s playful online series “The Privilege Tournament”).

The (paradoxically privileged) status of “victim” confers upon its owner(s) the (unquestioned and unquestionable, because “sacred”) right to exert control over narratives (including the speech of other people, especially “non-victims”)—–a right understood as unimpeachable owing to the (pro)claimed, privileged status of “victim” and the authority this status bestows.

This is what George Will meant when he stated that victimhood is a privileged status, and this is just about the only thing he got right in his op-ed. He didn’t mean (or say) it was a privilege to be raped. He said that the status of “victim” comes with certain privileges. And this is what he meant. His greatest taboo, of course, was in exposing the culture of victimhood as one of power and in pointing out that the position of “victim”—-at least in contemporary U.S. society—-is one of power.

In other words, Will’s “transgression” consists of naming the power that the label “victim” intends to occlude, and upon whose occlusion the maintenance of that power depends. In exposing both the underlying mechanisms of power at play and their occlusion, Will’s op-ed threatens to subvert the authority of “victimhood.” It is primarily for this reason that he is currently being skewered online, although no one skewering him is openly admitting that this is the reason—-for doing so would force his critics to even more clearly detail the power structures underpinning the culture of “victimhood.”

[***DRAFT: WEDNESDAY, JUNE 11th, 2014. 17:44 EDT***]

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