Category Archives: blaming

Why I don’t think it’s funny to use Limbaugh’s drug abuse as a punchline.

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at three rivers fog.)

Quoted: Karl Michalak, “Face Value” (excerpt)

Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:

It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.

[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

I Hope You Feel Better

I hope you feel better.

They mean well. They always do. It’s what people say when they hear someone they know is in pain or ill or uncomfortable. I’ve learned that tears and “Why would you say that to me?” while an accurate reflection of how it makes me feel is pretty much guaranteed to lead to all sorts of unpleasantness I don’t want to have to deal with.

Whoa where did that come from I was just trying to be nice. What’s wrong with her? Can’t you just take it for what it’s meant?

I really can’t. For one thing my brain doesn’t process subtext quickly enough to have conversations at full neurotypical voice conversation speed — I’m doing the best I can keeping up with the text alone. But I don’t wear a sign that says “I am not good at auditory processing.” If I did I’d be explaining that all the time too. I don’t like talking that much.

(What’s that mean? It means I hear fine. I hear everything. ((When tinnitus isn’t in the way meh.)) What I have trouble with — and sometimes it’s harder than others — is pulling the thread of one person’s voice out of everything else that’s coming in through my ears and turning sound into meaning. If there’s a television in my visual field this task gets harder. This is why I take books to restaurants; I usually can’t make out what the person I’m eating with is saying anyway.)

Well. I can take it as it’s meant when it’s someone who doesn’t know me. When the person saying it doesn’t know that I have a disease that leaves me in pain all the time and exhausted all the time and makes it hard to walk and think and work and all the Weird Shit that goes along with it I can accept “I hope you feel better” because it doesn’t actually mean anything. It’s just politeness.

When the person who’s saying it has heard me or read me (often we’ve also had the conversation amndaw wrote about in her Who Hates to Hear They Look Great? post) it hurts. Lately I’ve been not eating much and throwing up a lot and it’s not a lot of fun. I mentioned that I didn’t feel good at my LiveJournal and every comment was a form of this. I even got one in imperative voice: “feel better soon.”

I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.

Demands that I feel better discount all that.

I want to tell people to please not say that to me. But I know how it’ll go. I’ll be the mean cripple yelling at people who were just trying to be nice. So I mostly don’t say it.

Bonus Section:
Since most essays from marginalized people on the topic of Insensitive Things Privileged Folks Have Said To Us will garner at least one comment along the lines of “Well if you’re going to tell people they shouldn’t say whatever how about you tell us what we should say.” At which I’m like thanks for the derailment attempt that’s so thoughtful! I am so delighted to do this work for you you have no idea. But I do actually have something here. An expression of sympathy that doesn’t include a request or demand that I do something impossible is always nice. I’m a really big fan of “That sucks. I’m sorry you don’t feel good.”

Which Is Worse: Reality TV or the commentary on it?

I’d heard mentions recently of the show Hoarders, on A&E. (I’m not going to link to their site.) The show, from what I gather, is a series with episodes focusing on individuals who compulsively hoard possessions. I’ve never watched it and do not plan to, as I’m extremely uneasy about television shows that focus on people in crisis to, well, entertain other people. I have the same issues with Intervention (also an A&E show) and the Celebrity Rehab/Sober House/Sex Addicts shows with Dr. Drew. I understand that on some level, they could be useful or educational or contribute to diminishing stigma and demystifying therapy and counseling, but mostly it just feels like taking advantage of people who are dealing with addiction or disability.

This is especially true as the core of all reality tv is, of course, drama – so the shows focus on people in absolute crisis, at proverbial rock bottom, relapses and failures. And the drama is heightened when the person’s disability or addiction is as extreme as possible. So the Hoarders show focuses on people who are extreme hoarders, having lost friends and family because of their compulsions, not someone who has a drawer in the kitchen filled with old takeout menus. This extremely heightens the message that the person in the show is an “other,” a “freak,” to be gawked at.

And that’s the problem – even if I never watch these shows, there are still people who watch them and then talk or write about them. I’ve managed to avoid the worst of it, but commenter Penny, catastrophe discovered this “gem” at Jezebel and sent it my way as an example of the ableism at its extreme. It’s bad enough that before I go any further, I should warn you that some of the quotes are truly horrifying and you may not want to read them. We start off on a great foot with the title: “Sometimes, A Hoarder Just Can’t Be Helped.”

The very first sentence of the post informs us that the author found Augustine, the woman who is the focus of this episode of Hoarders, “frankly, very hard to empathize with.” Red flag! You are not watching this television show to determine whether the person with a disability is worthy of your empathy! Or rather, if you are, you should turn the tv off immediately. This is a real woman, a person, a human. The premise of the show, indeed the title of the show, indicates that she has a disability that has had a monumental effect on her life and functioning. If you are watching a show about her without empathy, then you’re just pointing at a sideshow freak.

The post then goes on to applaud the professional counselors who come to help Augustine, “who miraculously remain positive and chipper throughout the entire ordeal” even though there is stuff in the hoarded material that the author clearly considers to be super duper gross. But in the author’s eyes, Augustine’s biggest sin is not hoarding icky things, it is that she “has no remorse for what her actions have done to her family and her community … and absolutely no gratitude toward the people who are trying to help her stay in her home. She only blames other people for her situation.” This is the point in the post where my jaw actually dropped open. Yes, the woman who the show profiles specifically and explicitly because she has extreme compulsions to hoard … has strong compulsions to hoard! The author seems to think that Augustine has been hoarding out of spite or stubbornness and now that these people are helping her, she will just “snap out of it” and repent. But that’s not how a disability works. And blaming Augustine for not being magically cured of her disability during the course of taping is cruel and ableist.

But wait – it gets even worse. We are not done applauding these saintly folk who have taken time out of their days to help this woman with a disability who does not even appreciate all that they are doing for her. “Watching this episode, it’s impossible not to be struck by the generosity and caring of the people who are helping Augustine, and to wonder if their resources couldn’t be used helping other people who actually want to change.” Yup. That’s a direct quote, really. Or, in other words, Hey, we sent a counselor down there, and she didn’t immediately change her entire life and patterns of thinking. So fuck her. We’re done with her. Because this woman with a disability didn’t act the way we wanted her to. “Augustine seems less like a person with a compulsion caused by feelings of loss who desperately wants to get her life in control, and more like the clinical definition of a sociopath.” Or, because she wasn’t disabled in the way the author expected her to be disabled, we should give up on her.

So for me, the commentary is worse than the show itself. The show just places the person with a disability in the public eye – it takes a member of the public to do the pointing and laughing.

Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:

…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally,  most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.

…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.

…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.

An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.

I don’t have a “real” mental health condition, I’m just weak, and other bad self-talk

One of the hardest things for me in dealing with my mental health condition is my very strong theory that everyone else is having exactly the same problems that I am, but they’re just 8 million times better at dealing with them, and hiding them from everyone else. And thus, I don’t talk about my mental health, much, because everyone else is obviously coping with the same thing, and I’m just a big whiner who can’t cope and fails at everything and is useless and should just run away and everyone will be better and– stop.

For extra special bonus points, my mental health condition will also remind me that if I just try hard enough, if I just do more things, I will prove that I’m coping Just Fine and everyone will love me and why would anyone want to talk to someone who isn’t doing all this extra stuff and if I just could cope the way everyone else did I wouldn’t have these problems and I would just be good enough and not have to do all these things and– stop.

It’s a fun game my brain chemistry plays with me and part of the reason it’s so successful is because of how mental health conditions are portrayed in popular culture.

I don’t talk about how my brain is working this week (this month, this semester) because I’m afraid. I’ve already experienced backlash related to my mental health condition online, and I fear “coming out” to my professors, my classmates, or the people on any of the six committees I’m on this semester because suddenly I’ll be weak. I’ll be the scary girl who might snap. Maybe they’ll ask about my experiences being detained by hospital authorities for “my own good”. Maybe they’ll start to doubt the validity of my research, or dismiss my opinions, or stop telling me about meetings, or start talking about me behind my back, whispering and then they’ll be making fun of me all the time and it will be just like high school and I am not sure I can cope with that again and I don’t want to go to the hospital and I don’t want to go to the doctor and tell them I’m not coping because they’ll lock me away and– stop.

It took me a decade of this constant self-talk before someone told me it wasn’t “normal”, and that I could get help to deal with it. And despite having gotten effective help in the past, despite increasingly being able to keep myself focused and on task and not falling apart all over the place, I’m still deathly afraid of talking to people about mental health concerns. I’m still afraid, today, right now, to go to my doctor’s appointment because doesn’t everyone have their heart pounding in their ears during class? Isn’t everyone convinced their profs all hate them? Doesn’t everyone think that if they just stretch themselves a little thinner, they’ll be good enough?

The only reason I resisted getting help for so long, when I could have been getting help as soon as I started having these symptoms, was because Mental Illness has a huge social stigma attached to it. People like me, who “just” have such bad self-talk that they harm themselves in ways that aren’t easily noticed (six committees? plus the writing for the paper? Plus the FWD/Forward blog duties? Not to mention trying to finish the MA in a year? With a husband who’s recovering from cancer surgery and has a disability? And trying to make sure everyone eats healthy, and trying to keep the housework up? Self, what are you doing? Besides doing it all wrong, of course.) can end up not seeking help because I’m not crazy, I’m just stupid and lazy. We’re lead to believe “real” mental health conditions are like t.v. version of schizophrenia and movie versions of OCD.

I had a great ending planned to this, that would invite people to talk about how pop cultural portrayals of mental health concerns affected them. I also wanted to write about how I don’t want to put a stigma on schizophrenia and OCD, but on the way these conditions are portrayed in the media, but if I keep writing, it’s going to be another way to not go to the doctor and get a needed prescription for anti-anxiety medication. Last year I didn’t go to the doctor until I thought I was having a heart attack and could barely breath.

But it’s all in my head, right? People like me, we’re just weak.

I’d Rather Be Dead

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

Disability 101: What is Able-Bodied or Abled Privilege?

What is able-bodied or abled privilege?

The term able-bodied/abled privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied and/or abled people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, people with psychiatric conditions, and those with chronic health conditions, abled privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society. Able-bodied and abled privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, [YouTube link] most of us are “soaking in it.”

Many cultures have social expectations, structures, cultural mores, and institutions that are set up to accommodate able-bodied and/or abled people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” or “fully able,” whether in whole or part. Able-bodied or abled privilege also encompasses things like not having to worry about one’s energy level and/or pain level on any given day, the possible negative reactions of others to one’s needs due to his/her/zie’s disability or chronic condition, being stared at or questioned about (with varying degrees of invasiveness) his/her/zie’s disability or condition by strangers, her/his/zie’s ability to move for long distances or on a variety of surfaces without inconvenience/discomfort/pain and at a pace considered “appropriate” by others, being able to make decisions about the course of one’s medical, psychiatric, or other type of treatment without being questioned by others as to whether he/she/zie is making “the right choice” or can make a “rational” decision about his/her/zie’s own treatment-related choices, or being ignored by able-bodied people when one needs assistance in public; these kinds of able privilege masquerade as “the norm” for those without disabilities. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack” [link goes to Amptoons].

An earlier version of this post was originally posted at Faces of Fibro on May 6, 2009.

Why are they so angry at her?

Last week, Oprah did a segment on her show following up with Charla Nash, the woman who was viciously attacked by her friend’s pet chimpanzee in February 2009. The attack left Nash with significant and pervasive injuries to her hands and head, especially her face. After significant treatment and reconstruction, both her eyes were removed, she has only one thumb and no other fingers on either hand, and eats by taking liquids through a straw.

I did not watch the show – my feelings about all this are the press coverage is only to get a shot of her reconstructed face and show pictures of the “freak,” and I didn’t want to be a part of it – but I heard lots of reactions to the show in the media, on blogs, on twitter.

The primary reaction seemed to be anger. So many people said “if I lost my sight and my hands and my face looked like that, I would rather be dead.” And Nash is very clear that she would not rather be dead. She spends lots of time with her 17 year old daughter. From the Oprah site: “When Briana visits her mother, Charla says they just enjoy being together. ‘We lay next to each other and we hold each other and we talk about things—what she does at school or with her friends.'” She continues to push herself to recover, walking every day whether or not she feels good.

The reactions I heard would touch on her time with her daughter, her efforts to continue to heal, and dismiss them entirely. “You know, I love my kids and I’d want to see them grow up, but even still, I’d just rather be dead.” Despite being presented with the woman herself saying she was happy to be alive and happy to have survived, they ignored her, imposing their own ableist assumptions about living as a person with a disability and how awful they thought that would be.

They were angry at her for wanting to live, because it contradicted their thoughts about whether a person with a disability could live a fulfilling and happy life. They were angry at her even in the same breath as bemoaning how awful the attack was, how unfortunate for her that the injuries were so extensive. They were angry at her for thinking she was the same person, thinking she had a right to continue existing, for not giving up and going away to die.

I’m sorry that Charla Nash has to be the subject of this “freak” show. I’m sorry that she has to be the recipient of this anger. But I also want to put her face, put her story, on billboards nationwide, to say “fuck you” to everyone who wants her to go away and disappear.