Category Archives: shaming

SSRIs, Violence, Walking, and Dogs

Recently a link was making the rounds on Tumblr about how SSRI anti-depressants caused violent and homicidal reactions in people (h/t to the lovely Cara for making sure we saw it). I was largely ignoring it because, frankly, there’s a lot of unproductive discussions about whether SSRIs, or anti-depressants in general, or even psychotropic drugs as a whole, are teh most awesome things ever! or an evil tool of big pharma or poisoning our children or should be put in the water supply to help the population at large. And my attitude towards psych treatment, whether it be therapy or medication or anything else, is pretty similar to my attitude about religion: everyone has the right to make their own determinations about their treatment and whether they would or would not like to take psych meds, and just as my atheism doesn’t make someone else’s faith any less valid, I can support someone’s decision to reject psych meds without lessening my own right to believe they help me personally. (To extend that, I support anyone’s right and decision to pursue or not pursue any kind of treatment, to identify as they feel appropriate, and to reject the whole framework and basis of psychiatry.)

That said, I thought it might be useful to take a look at this article to discuss some of the issues I see in a lot of these arguments and discussions. The basic gist of the article is to publicize an archive of “3,500 crime related news reports linked to the use of SSRI antidepressants … Pharma and the FDA may still be agnostic about SSRIs causing violence but 700 murders, 200 murder-suicides and 47 postpartum depression cases, including the 2006 case of Andrea Yates who drowned her five children on Effexor, don’t lie.” The article describes the site as “more of a public service than the FDA which has yet to withdraw the drugs named in the 3,500 stories–or even call them dangerous,” so the clear goal of the article is to encourage prohibition of SSRIs as a class.

That’s a pretty broad goal to be supported by such thin and unconvincing evidence – and that’s my problem with these kinds of arguments. Whenever I talk about these kinds of science articles, I often use the same phrase: “correlation does not equal causation.” This means that although two variables may be very closely associated, there’s not enough information to figure out which of them causes the other, or even if the two are related by anything more than chance and coincidence. A simple example is that everyone who orders food at McDonald’s is a human. Can we assume that if a dog walked into McDonald’s and ordered food, it would magically transform into a human because of the correlation between ordering at McDonald’s and being human? No.

To unpack this further, let’s look at the fact that a lot of people who walk in my neighborhood have dogs. I know some people who got dogs specifically in order to encourage themselves to do more walking – so the dog is influencing how often they walk. However, I also know people who do a lot of running or hiking and got a dog to keep them company on their outings – so their walking/running influenced their having a dog. So does being a person who walks outdoors make you more likely to get a dog, or does having a dog make you more likely to walk outdoors? We just do not have enough information to figure that out. This means my observations of walkers and dogs should not justify a public policy to issue dogs to every household to ensure people walk outdoors.

To extend this to the SSRI stories, there’s not enough evidence for us to determine if people who are not violent or homicidal become so when they are given SSRIs, or whether people who are already violent or homicidal are likely to be given SSRIs for treatment. And that’s a very important thing to be absolutely clear on when we’re talking about having the FDA eliminate an entire class of anti-depressants that some (including me) rely on for treatment.

There’s a couple other factors in the dog analogy that I also see at play in this SSRI story:

  • Observer bias: I think dogs are pretty cute, so when I’m out and about, I tend to notice pedestrians with dogs more than I do pedestrians without dogs. So if I see 10 pedestrians and 4 of them have dogs, I’m much more likely to notice and remember the dog people and think that the majority of pedestrians have dogs. Similarly, self described “anti-SSRI advocates” are more likely to notice and prioritize instances where SSRIs occur with violent behavior.
  • Who is observed: I happen to live two blocks from the most popular dog park in town, so people from miles away drive here in order to hike with their dogs. There are a lot of trails that don’t allow dogs and if I lived right next to one of them, I’d likely see a lot more walkers who are dogless. So I’m not looking at the entire population of walkers and dog owners when I’m observing a connection between those two characteristics – I’m looking at a population more likely to suggest to me that the two are connected. Similarly, the SSRI stories are drawn entirely from crime reporting. Stories about people who take SSRIs and do not engage in violent, homicidal, or otherwise criminal behavior are not going to be in a crime story – so the archive is looking at a subset of SSRI-takers that is more likely to confirm their perception that SSRIs cause criminal behavior.
  • Interpreting evidence to fit desired results: when growing up, I tried out the “dogs will make me walk and exercise more” argument on my parents. This is because I wanted to get a dog, and I was trying to put together any argument I could to support that conclusion – I had started with the conclusion instead of with the evidence. Some of the stories mentioned in the article make me wonder if the SSRI stories suffer from the same problem. One of the quoted stories is “Lynyrd Skynyrd harmonicist Mike Caruso’s remark that, ‘the doctor put me on Cymbalta. That turned me manic.'” To me, giving an anti-depressant to someone with undiagnosed bipolar and triggering manic behavior is a very different argument than if taking the SSRI created violent or homicidal behavior that hadn’t previously existed in the person.

In order to convince me that SSRI used caused these behaviors in people who otherwise would not display them, I would want to see a clinical study where people were observed before and after starting SSRI treatment and a control group was also monitored while not having SSRI treatment. Those kinds of scientific studies are the only way to meaningfully determine whether the two variables have any kind of causal relationship.[1] And without that data, this article does a lot more harm than good – by reinforcing existing perceptions that criminals are all mentally ill and by shaming or scaring people who take and benefit from SSRIs.

[1] I should note that requests for data and scientific studies are often used to invalidate or minimize reported personal experiences from marginalized groups, an academic privilege argument of sorts. I do and continue to credit individual experiences where SSRI treatment caused specific behaviors for that individual, but I feel very uncomfortable making blanket decisions about whether or not these drugs should be available at all, for anyone, based on third party descriptions of the experiences of others.

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.)

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).

Why ‘What People Think’ Matters

Permanent Limited Duty is an option that a service member has to being fully medically discharged.  It allows the member to stay active duty on a strict schedule and with very strict limitations of duty.  It allows them to fulfill their contract obligation as opposed to being released from it early.  There are specific criteria that must be fulfilled, including proving a need to be allowed to placed on PERMLIMDU Status.  For me, things like having a minor child who needed insurance and being unmarried and without another source of income would have been sufficient for me to prove a need for PERMLIMDU.  There are other factors involved, including approval from your CO and CoC.

In the year leading up to my Medical Board and subsequent discharge I was in so much pain and so tired all the damn time and overall not coping well with what was going on with my lack of medical care.  On top of all of my work and training and single motherhood was Physical Training (PT), which was increasing because as my body was struggling my readiness standards were falling due to my inability to push through the pain.  As I was forced to ease up I gained a little weight which meant I had to increase my PT.  Increased PT increased my pain, which increased my problems overall, and somewhere along the line something broke completely inside me.  It was a vicious circle of some of the most cruel means of my life.  I needed more PT, but increasing PT caused  more injury that meant I had to decrease the type, intensity and amount of PT my doctors would let me do.  That decrease caused weight gain…you can see where this is going…

Long story short, I had to be put on a day shift and have my hours reduced to half days because I was not doing so well.  While the rest of my friends and peers were moving on to the things that we had now spent over three years training for, things that were going to expand their careers, the actual finish line of all we had worked for, and I was riding a desk.  To be fair, it was a job I really grew to love and something I could see myself doing again.  My direct supervisor was awesome, and our division boss was incredible.  To date he is the most wonderful Senior Enlisted person I have ever had the honor of working for who also happened to be very supportive of my medical process.  But it wasn’t what I had trained for, and the sudden disappearance of all of my friends made that even more heavy for me.  I was devastated that I was missing that.  I felt, once again, like a failure, like my body was a failure.  The career I had worked for was crashing down around me and it seemed I had no one to support me through it.

When you are going through a serious medical Thing (for lack of a better…whatever) you start to notice that people tend to disappear.  I don’t know if it is too hard for them to handle or if they don’t give a fuck or what…but you run out of people who you can call to take you to a doctor’s appointment because whatever medication you are on makes you so dizzy you really shouldn’t drive, or people who you can call to watch your children while you go to physio.  You can’t get someone to hold your hand during an X-ray, let alone get them out for coffee.  While I adamantly maintain that my medical problems and disability were not brought on by depression as some would have you believe, being utterly alone during this time cause me an at the time crushing depression.  Sometimes I still feel it. I literally did not hear from my former friends.  Sometimes if you run into people you used to have energy to club or shop with they bring it up as a polite thing to say, kind of like when people say “How ya doin’?” and never really expect you to answer.  So when they would say “How’s…all your…stuff?” I would tell them, “Oh, it’s a big boring mess, how’re you doing?”.  If I actually did talk about it I would notice that they tended to not really want to talk to me again (even though most of them had to eventually because of my new job).

I still had to take my yearly training.  During my yearly training our annual Evaluations came out.  I was pleasantly surprised to receive a relatively high mark on mine.  My boss apparently thought that I was doing a lot in the hours I was allowed to be there during the day.  I worked as hard as I could with what I had to give, and someone noticed.  I was beginning to feel as though maybe I could still do something productive in the Navy, as if the thoughts of PERMLIMDU Status wouldn’t be the end of the World as I knew it.  I began to seriously consider it.  I was in my annual training with the sister of a friend whom I still had occasional contact with, and who was unhappy with her own eval.  As much as I sympathized with her situation, I understood that due to my circumstances our peer groups were different, and my evaluation was not competitive with hers.  I made it a point to not discuss my eval with her or even bring it up.  But when she asked me point blank about mine, my refusal to answer made her assume that mine was better, and this caused a riff between us that I had hoped to avoid. I felt awful, because she was a really great person whom I had actually though I had made friends with. It is such a tricky thing to make new friends when you are going through so much…

It was very difficult.  Nothing I could say was good enough.  It wasn’t fair, she said.  It was wrong, she said.  I was on the same fitness enhancement, she said, and I didn’t even work shift work, she said.  I only got that mark because I sucked up to my boss, she said, and because I “lucked” into a job above my pay grade, she said.  All she could see were the positive outcomes of what was, for me, a really shitty situation.  The one good thing I had going for me was that someone had need of a body to fill a position when my world fell apart, and that it could have been a semi-permanent thing.

That night I received a phone call from my friend, inviting me to meet her for coffee…something that we hadn’t done in I don’t know how long.  She certainly hadn’t had time for socializing in a long time, it seemed, and I was pleasantly surprised.  We met at the Starbucks near my house, another nicety, so I didn’t have to go far.  She treated and we split a big chocolate brownie, because we shared that superhuman tolerance I brag about.  We had polite chit chat and I really felt great getting to talk to her.

Until she brought up my eval.

She brought me there to defend her sister’s side of the whole thing — to tell me that she didn’t think it was fair that I would try to stay on in an office where I could get unfair evals when the rest of my peers were doing real jobs in the Navy.  I was so ashamed that I didn’t even think to argue on my own behalf.  To tell her that it would have been the best thing for me to do so.  That it would mean that I could still give my Kid insurance and have an income and finish my obligation.  That I would still have some connection to all the work I had put in.  But again, all anyone could see was how my situation was unfair to them (even though, in reality, it wasn’t, since my evaluations had no effect whatsoever, on theirs, in case I haven’t made that clear). No one else could see beyond how they felt, to what it meant for me and my family, to me and all the work I had done. Instead of a legacy of nothing finished, I could give something back. So, I lied. I said that I didn’t have that intention — I said I intended to quit and just go away.

But now I was just ashamed.

I was so embarrassed.  I put on my Brave Face and finished up the visit as well as I could.  I cried the whole way home.  I remember deciding that night that if I chose PERMLIMDU that people would all think that I was some big lazy slacker.  A Bad Cripple, even though some people would never see me as disabled at all, and why should they? I hadn’t even considered that label for myself yet. They would all see me as someone who was there to milk some system and gain some unearned privilege.  I had let someone who was supposed to be my friend shame me into giving up things that I needed for my life. So, when the choice came up with the Medical Board Liason and my Division Officer, I turned it down. Again, I lied. I said that it wasn’t something I thought I could do. It wasn’t what I joined the Navy to do, I said.

It is easy to say “who cares what people think” because we all want to assume that we don’t make decisions based on the feelings of others. But the guilt and shame we feel at the stares and hands of other people is hard to take, so much so that we will often expend our spoons to make the feelings go away — even if it is not to our own benefit.

One thing I should add: Through it all, I learned the value of the friends who come out of seemingly nowhere to support you, just when you least expect it, and the value of friends in Bloglandia. Never let anyone tell you that your blog world friends aren’t as good as Meat World friends. They are all appreciated, especially as the wounds of the lost friends heal. The Meat World friends who held on might be few and far between, but they have been a much needed comfort through the many tears.

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.

No, Actually, “Eat a Sandwich” is Not “Feminist Activism”…

…and I’m going to tell you why.

Because the policing of women’s bodies, whether you are being cheeky, or saying it to a plastic doll, is not cool. It’s hurtful and not useful, and has no place in feminist discourse. Can we move past that point? Huh? That’s a pretty Kindy thing, IMNSFHO.

‘Kay.

Moving on.

*The rest of this post is going to use some harsh language that describes my experiences/anger/frustration with Anorexia and Bulimia. I am direct and vulgar and sometimes a little flippant with how I describe my past behavior, and that is how I survived it. This may be triggering to some people. I also swear. A lot.*

There is a point when you are struggling* with an eating disorder that you might find yourself thin. Perhaps painfully thin. Maybe dangerously thin. You know this. You are aware. You haven’t avoided solids for this long, or barfed up all of that dinner you were pretending to enjoy without realizing what this means to your body. You might have some misunderstandings about what your body is actually needing…but you pretty much know.

In fact, everyone knows. All anyone can fucking talk about is how good you look now that you are so skinny…but wait…you just passed so good and have moved into too skinny…(because there is never good enough…too fat or too thin you will never be in)

Seriously, girl, eat a damned burger.

Or a bacon sandwich.

Eat something.

Because, you know, it’s that easy.

In fact (shifting voices), the only thing that anyone said to me that wasn’t so fucking insulting that I didn’t want to scream was “I am not going to insult you by saying how much harm you are doing to yourself because you are a smart girl and I know you know, when you are ready, I’ll be here”.

I watched all the shockudrama’s that were meant to scare me because ZOMG my STOMACH could RUPTURE and I was DOING THIS to MYSELF!

*for shame*

I saw Tracy Gold and the mom from Family Ties and countless others on the after school specials during school and I fucking knew.

How could I not? I knew what the result was…that was the damned point.

And I knew I was sick.

I. Didn’t. Care.

And that was scarier than anything…that I felt helpless inside my own body to stop it.

Eat a fucking sandwich.

As if I wouldn’t just throw it back up.

As if that bottle of ipecac wasn’t in my glove box.

As if I wasn’t really good at tearing it into pieces to make you think I was actually eating it only to drop some and crumble some and throw the rest away…

No, I wasn’t embarrassed of letting you hear me pee…the water running was a cover for something else…

Eat a fucking sandwich.

Tumbling around inside my head…as if it never occurred to me to do.

As if I had the power to just eat that fucking sandwich.

The hurt and the denial and the lies…and shit yelling at me just didn’t help…

Because who the fuck carries sugar packets in their purse?

And do you know when that shit started?

When I was a teenager.

We shouldn’t infantilize teenagers by saying “b-b-but they don’t get that this message isn’t aimed at real people”.

Bullshit.

Teenagers are people…with feelings…

And if anyone can tell you about what it feels like to hurt because you sit outside the socially accepted norm of appearance, it is another teenager…

being told to just eat a sandwich isn’t that funny if you are dealing with body issues

and burning yourself with a curling iron because you don’t know what else to do…

Eat. A. Damn. Sandwich.

It’s not funny or witty or clever or great new empowering activism.

It’s awful.

It’s hurtful.

It’s waking up in your own bile.

And it is possibly terrifying the hell out of someone.

Unpack that one.

*I don’t like to use “struggle” any longer when discussing disability. My experience with EDs was a struggle. There is no other word in my vocabulary, which spans a few languages, to explain it. I struggled, fought, and am still not sure I have won this one.

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.

“Bad Cripple”

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Power and Responsibility

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.