I was going to re-open my blog with some sort of heralding post that announced the re-opening of my blog etc and how I had no idea what I was going to make it “about” so I’ve decided not to make it about anything in particular but to be perhaps more rantish or more linear or more of a certain “je ne sais précisément quoi.” I may still do that. But today I’m going to start with a kind of Pre-Grand Opening Sale because I learned very very recently that today is Blogging Against Disablism Day.
I was supposed to work today. I will work tomorrow I am fairly sure. Today I battled uncontrollable anxiety from shortly after I awoke at 6:30am until I finally took an anxiolytic and fell asleep at 2:30 until 6pm. I lost a day of work which, because I work as a private contractor, I don’t get any kind of compensation for. Today was a Lost Day.
I’ve lived through thousands of Lost Days. No one knows I’m disabled except for my closest friends, and some of them do not even comprehend how it is that a disability that is “all in your head” can possibly have the material effect of robbing me of my ability to act, unless of course I am being lazy or irresponsible and “letting it” have an impact on me. Those who think that way tend not to be friends for a very long time, as it will become clear to anyone who knows me that I am a vehement apologist for the “lazy” and “irresponsible” who “let” things like mental illness or social disability–as well as cultural degradation and social erasure, which might be said to be non-material disturbances on a collective level–get in the way of a “successful life.” I mean, whatever that is. Read me for long and you will get the distinct impression that I do not have an orthodox opinion of “success,” either.
Of course, it is a feature of my mental illness that I do not believe in many of the same paradigms that ordinary Americans believe in, because I have seen firsthand how they assume the everyone is equally endowed with personal, familial and cultural faculties to pursue their dreams uninhibited. And so I find myself in a curious relationship with psychiatry itself even as I realize that I am at least “differently abled” in a way that might be labeled “psychiatric,” if only because that word conveys pretty much what I mean it to convey: that getting out of bed and having a day to do as you wish or as you are obligated is not something that I can count on and yet the conditions (My many diagnoses. Let me show you them.) that occasionally dictate that I crouch in my chair all day or curl up in bed or simply sit here unable to move are not taken to be particularly “real” by a large segment of the culture I live in.
Psychiatry itself is to blame for this to a certain extent: it itself parades as a science even though there are very few empirical studies that establish “mental illness” as strictly analogous to physical illness and there is very little evidence to support most of its pet theories regarding neurotransmitters and psychological disturbances. And yet it continues to act as though it knows what it is “treating” and how, even though a cursory look at most entries in the Physician’s Desk Reference for psychiatric medications will reveal that in most cases, “it is not understood” how the medication actually works, although it is usually “assumed to be related to” the given pharmaceutical’s effects on the availability of one or more of three neurotransmitters: serotonin, dopamine, and norepinephrine. Nevermind that there are more than one hundred neurotransmitters in the human central nervous system [Source: Hyman, Steven: “Neurobiology: On Neurotransmitters” Science Week, http://scienceweek.com/2005/sw050429-2.htm, 1 May 2008.]. Psychiatry pays attention almost exclusively to The Big Three.
But I’m not writing this in order to critique psychiatry as a science. Mainly I decided to “blog against disablism” because I am one of millions who are “invisibly disabled” and that not only are we not obviously disabled, but our disability is such that we ourselves often internalize the rather Victorian notion that if we simply had enough guts, willpower, or something, that we could “get over it” and get on with life just like “everybody” else.
(Yes I use lots of scare quotes. I am endeavoring to use them less often, but unfortunately I find myself frequently in the position of using words that, I think, are widely understood in a way that is personally counterintuitive, so I can’t really get behind them 100%, as they say. So I “quote” them in order to make it clear that I am repeating ideas that have come to me from even further away than most of the rest of “my” ideas. If it gets annoying, someone will tell me. And I will ignore them, in all likelihood.)
To be sure, the particular “mental Illness” I have has killed a number of people in my family. The fact that the cause of death in all cases was suicide might lead some to postulate that it was not the mental illness which caused their deaths at all, but rather some sort of character weakness, selfishness, or a the very least an inability to overcome phantoms of pain rather than real, palpable pain. Of course, it is rarely noted by those who would argue thus that any inability that leads to such an unthinkable decision as suicide must be quite powerful, given their own sense of the urgent need to sustain oneself in the face of whatever calamity. It is not as though there are a bunch of us who sit around trying to think of ways to die for the fun of it, to get attention–though we might truly need it–or to otherwise manipulate death so that we somehow receive from it a Get Out of Jail Free card.
(I wonder, actually, why it makes so many people so angry that someone would want to kill themselves. Apart from being angry with a loved one who says a permanent good-bye in that way–people also get angry at loved ones who die for other reasons, and whether that is rational or not, it is a frequent component of grief–there seems to be a large group of people who are quite angry with the idea that anyone, anywhere would commit suicide. Is it fair to make of them an analogy with those who are so “happy” in their jobs that they widely and loudly resent anyone who does not work for a living? What is it about life and work that makes us think not only that they are compulsory, but that someone who escapes either is somehow cheating us, or the system, or getting something for nothing? Is death an unmerited freedom? I just wonder.)
Myself, I’ve not bothered even to try to apply for any kind of disability here in the US–even partial disabilty–because I have seen the hoops one has to jump through in order to have a non-physical ailment recognized at all, much less given any assistance for, and those hoops would intimidate many who have no particular impairment in social or economic functioning. I can’t even begin to want to subject myself to the humiliation of being denied once or more to “test” the authenticity of my claim (Everyone is denied the first time. Ask anybody who receives disability for a psychiatric disorder and you will see that they had to apply for it at least twice, if not three or four times).
As is fairly well known in the US, the Americans with Disabilities Act of 1991 began to require that insurance companies cover certain psychological disorders “in parity” with their coverage of physical disorders. What is not coming to the attention of many, however, is that insurance companies (most notably Blue Cross, in my experience) are either finding loopholes or have gained the right to define parity diagnoses themselves, and the number and types of diagnoses that they cover at parity is dwindling by the month. For another post, or perhaps for your homework, some research into the legal machinations allowing them to do this would be a very good thing.
Right now, I think I have to find a point for writing all of this. Well, my point is simply this: physical pain and psychological pain are not all that different. They are both “soul-destroying” and they are both vividly real. Of course, pain management in the US is a completely other can of testerical Drug War worms, to the point that those suffering physical pain are often “demoted” in the eyes of the medical establishment to patients whose pain is “all in their heads”–another betrayal, this time by medical professionals themselves, of the culturally entrenched belief that psychologically-mediated pain is somehow less real, easier to bear, and not worthy of serious treatment.
In the end, I wind up as I often do: extremely suspicious of an American Individualism that assumes unlimited agency for the human subject. Science itself is at odds with this particular assumption, to the extent that physiology and environment are beginning to be seen as intimately interacting with each other. It seems that “choice” may be an accident of fate, and that unlimited personal agency is at best a frequent illusion and at worst an enslaving, paradoxically dehumanizing myth, demanding that we ignore the very real limitations of our own physiology and psychology and instead relentlessly pursue profit at the expense of anyone who cannot keep up.
I think that it is time to recognize the vast variability of human experience and to create a society unafraid of generosity and compassion, as the US so often seems to be. I’m not the first to come to the conclusion that life itself is, by definition and situation, synonymous with suffering, and I won’t be the last, but I find it necessary to point it out every chance I get. Because one day, it will come for you too.