Well, what’s the risk?
A lot of people took this tack in response to my PSA post. If I minorly annoy 49 people, but save one life!, isn’t it worth the risk?
Psssst: your privilege is showing.
See, here’s your thought process: If there’s a one-in-fifty chance my drive-by suggestions will help, it’s worth it!
But aren’t you forgetting someone? Forty-nine someones?
What’s the risk?
Here’s the risk. People with disabilities face a constant affront on their personal autonomy. Especially any time they are visibly disabled in public, there are the stares that people don’t even try to hide; the comments; the questions, the assholes who get it in their little pea brains to try to convince you that you can’t really be disabled, or not that disabled, or it can’t be that bad anyway; by corollary, the assholes who react as though you were dying in front of them, cooing and fawning and making sad eyes and telling you how sorry they are and how awful it must be; and then the assholes who see “person with disability” and read “person who NEEDS MY HELP!” — having the presumption and gall to take and push your wheelchair, or hold open doors far past the point of creepiness, or forcibly take from your hands whatever you were carrying, or, well, presume to tell you how they think you can “fix” your disability.
The blog you are reading is titled Feministe, so I can assume that most of you consider yourselves feminist, right? You can use that framework to understand a little bit of what it is like to live life with a disability: the “thousand little cuts” that make up one huge painful wound that we are trained from birth not to see.
And face it: as a temporarily abled person, you hold a vast amount of privilege in this culture. So when I tell you that there are so many things you do not see, please do not write me off.
Because there are so many things you do not see. You do not know this person’s medical history. You do not know this person’s family history. You do not know this person’s history, full stop, the whole of their experiences as a human being. You do not know what medical conditions this person has. You do not know how many they have and how any of them might interact. You do not know how disabling they are. You do not know how much of a person’s disability is physical and how much mental. You do not know what treatments are available for this person’s condition, and you do not know what treatments are available for this person. You do not know what allergies this person has. You do not know how any given treatment might affect this person mentally or physically. You do not know what therapies this person has already tried, and to what degree of success. You do not know what all this person has to do every day, and what may get in the way of doing those things.
And that’s just the beginning.
There are fairly rigid standards for diagnosing each medical condition, but don’t let that fool you; each individual person with that condition has their own individual life, and the condition takes on an individual form shaped around the outlines of that person’s life. Disability is a very fluid concept, despite popular conception, starting basically when a condition is interfering with your ability to conduct your life. But what is interfering, and what is that life? Again, I cannot emphasize enough, disability is a very fluid concept, taking a specialized form for each person it affects.
All this means that even though your work buddy’s grandma’s friend down the road shares whichever particular medical condition, that does not make your work buddy’s grandma’s friend down the road’s experiences transferable to mine.
Those of us with disabilities have, chances are, dealt with them for years already. We have already taken the time to learn about our condition, to understand how it works, to be able to spot how it might affect our particular lives. We have looked into a wide range of treatments available and have tried at least several. With some of those we may have dealt with some moderate to severe fallout: side effects, bodily reactions, or even psychological trauma.
I reiterate: We are far more likely to know what is going to help us live our lives than you are, however informed you think yourself on the subject. (And if that is “not very,” then, well, I am going to let you extract your own set of conclusions from that information.)
And even that aside, it can be dangerous to be constantly on-the-ready for whatever new tip, trick, herbal supplement, voo-doo diet, self-absorbed practitioner, or, yes, drug that any random acquaintance can come up with.
Yes, I said dangerous.
I don’t think a lot of people have any appreciation for what life with disability means. For how much has to change. Most PWD significantly restructure their everyday lives in ways that are invisible to even the most well-meaning of outsiders. The little idiosyncratic things we do: arrange our furniture a certain way, walk in a certain path, arrange our schedule certain ways, change when we sleep, eat, shower, or travel, perform tasks in a manner and order a normal person would not. We cut corners, don’t make the bed, don’t “do” our hair, rewear items of clothing, don’t wear certain items of clothing, wear items of clothing considered “inappropriate” for the setting. We make battle plans for every day in our life, micro-managing all those little things, enumerating all those little trade-offs, carefully managing the cost of every factor in every action.
Hang on, I’m going somewhere with this:
The first six months I lived in Orange (California) I didn’t have a car. Fortunately Orange County funds a decent public transportation structure, and I was able to take the bus whenever I needed to go anywhere. And the bus stops were common and the routes were frequent, but still, consider grocery shopping. It was either a mile’s walk to a bus stop for a route that took me straight down that street to the nearest grocery store or 3-4 blocks to a bus stop where I would have to take two separate routes to get to the store. And after all that walking and waiting in the hot sun on the hard cement (yes I sat) and then all the walking across the street and parking lot to the store’s doorway and then all the walking and stopping and standing around the store, half of which was painfully cold, and then all the standing and waiting in line and the energy it took to be sociable to the clerk and whoever else thought it was just dandy to strike up a conversation, and then, and then! I got to go out the door and do all that (minus the shopping part) over again, but this time carrying several bags of heavy groceries on my arm, worrying that my milk and meat might go bad in the hour-and-a-half it took to make it back to my front door.
And the dilemma I was faced with was: I only have the strength to make that trip every week and a half, two weeks. But if I buy enough groceries to last that time, that increases the load I have to handle on my way back (especially taking the first route, which would cut my time down to an hour) so much that I won’t be able to make the trip that often. But if I only carry the amount of groceries that I am able (and I use “able” very loosely) then I am going to run out and have to return to the store five or six days from now. And I am already making the simplest and easiest-to-make meals I can without compromising my nourishment. So what do I do?
I wanted to break that story down — into its most basic factors, I note; there were many more — to make you understand exactly how much thought goes into even the most basic of actions, and how much we have to change just to get those basics done. Although really, this doesn’t tell you what I had to change to accommodate those trips in my schedule: the activities (including, eventually, school/work altogether) I had to give up, the meals I had to skip, the socialization I had to avoid, the pain I went through.
See also: showering. And I bring in my own experience, which is not by any means representative (but which is not as out-of-the-ordinary as some might protest) because it is all I have to speak from, and because it helps put these concepts into human stories. It takes the hypothetical into reality. And it shows exactly how much I have to change when attempting to negotiate life with my disability.
What a lot of people don’t realize about their off-hand treatments is how much trying a new treatment messes with our already-set routines. Just to start off with those controversial little drugs: I might have to come off some, or all, of my current medication to try it. Then I have to deal with the side effects, which may fade off after several weeks or months, or may persist. Then I get to wait a period of time before it even begins to “kick in,” that period of time being anywhere from one week to six. I may have to titrate the dosage up, depending on the medication, which may take months. And then I get to wait until I’ve used it while it’s doing something long enough to have an informed opinion about how much it helps me. And then if it isn’t what I need it to be, I may have to titrate that dosage down or else go through a very scary withdrawal period (and I’ve done it).
That can be six months of my life. Months spent in pain and discomfort, months perhaps without being able to use other effective treatments, months dealing with side effects and reactions, months where I may be cranky and irritable and impaired cognitively. Months where, depending on the type of medication, I may be “out of it” emotionally so much as to render me a hermit (as which I have, fwiw, spent probably a year cumulatively). Months where I am taking comments wrong, imagining things, and possibly being preoccupied with death for lack of an effective treatment.
For some people it is simply not feasible to give up their current treatment to go be “open-minded” about other available treatments; they could very easily end up dead. And even those who don’t are denied weeks or months of time that could have been spent functional, without pain, without worry.
Are you willing to “suggest” people give up that time?
Even non drug treatments: say, for instance, exercise. You may have gathered from above that physical activity has significant cost for me in particular. How does one trip to the grocery store compare, on an objective level, to energy spent on one session doing cardio, weight lifting, yoga or tai chi? Isn’t the latter usually significantly harder? And I am to fit this into my schedule at least a couple times a week, how?
Of course, the sort of activity recommended for fibromyalgia is usually gentler; my current physical therapy has me doing very basic stretching as a means of building muscle strength. And it is usually done for a shorter period of time. But even ten minutes of stretching or walking takes away far more than ten minutes of my time. It takes away energy that could have been spent doing something far more important (like scooping the clumps of piss and shit out of my cats’ litter box) and creates pain, building exponentially the more time we’re talking about, that will be inhibitive later on down the line (to say nothing of, well, what it means to feel that pain in the real time).
And all this is purely physical cost; something else I feel is under appreciated by most people is the toll that all these things take on us emotionally. I only have so many spoons to use on physical tasks every day, but when it comes to mental aptitude a lot of people still expect me to have unlimited capacity. It doesn’t work that way. Again, the thousand little cuts: for every further thing to which I have to pay attention, for every further thing I have to change, for every further ounce of pain, fatigue, frustration I have to feel, I am sapped of mental energy. Sapped of spirit, you might say.
So when someone proposes that I go and research this New! And! Exciting! treatment, and learn how to use or perform it properly, and spend my time practicing, and incorporate it into my usual routine, they are often unaware of exactly how much it is they are asking me to do. And that’s after I tend to their fragile feelings of rejection if I fail to make positive noises about their Oh! So! Helpful! suggestion.
I only have so many things I can hold in my mind all at once. Which is why, sometimes, though I read your email and I haven’t forgotten you, I haven’t responded for a couple weeks now. Or why, sometimes, I put off making important phone calls, because I don’t have the energy to fight right now, even if it’s a simple task, I’m just tired of having to struggle and struggle to get even the simplest things done, I’m just so tired of facing so much resistance at every step. It’s like if every time you moved an inch you slammed into a brick wall. WHAM! Another inch. WHAM! Another inch. WHAM! WHAM! WHAM! WHAM! Oops, had to repeat that one for good m–WHAM!
At some point you just want to collapse to the ground and shout to the world, OK, I’M DEAD ALREADY!
And again, remind yourself that you don’t know their history, their current condition, their emotional state.
Because, well, I’m just one person. And let me tell you a little bit of my history.
I have fibromyalgia. Fibromyalgia was the “waste basket condition” in the 90s. It was what every doctor would throw at that pain-in-the-ass patient (usually a woman) who just wouldn’t shut the fuck up about how they hurt and stuff. Even though they weren’t showing anything up on tests. These women would return and they would whine and whine and be all, like, hysterical and stuff, so finally you’d throw this name at her and shuffle her out the door and on to some poor unexpecting specialist.
People with fibromyalgia have a complex about this. Because they have been told for ages now that it is “all in their heads.” That they are imagining their pain, or exaggerating it, or just looking for things to complain about. (Is that ringing any bells for you, feminists?) That it is psychosomatic, or that they are pathologizing all the small things that don’t matter in the long run.
And this condition is already very vague and nebulous. You can’t always point to a clear line where your inability stops and unwillingness kicks in. You “can do” something now, but how will it affect you in the future? But outsiders look at you and just see “lazy.” And, again, nothing shows up on any tests. So how are you supposed to prove your pain to these people? And… how are you supposed to prove your pain to yourself?
And the market is ripe for exploitation, moreso several years ago before the new class of drugs came out to treat fibro with some degree of efficacy. It’s altmed on crack. There’s not a diet program out there that hasn’t been sold as a “cure” for fibromyalgia at some point. And there are any number of doctors, nurses, chiropracters, fabricators, and just plain wanna-bes who are pushing their treatment for fibromyalgia even when it fails to stand up to scientific analysis. Herbs, vitamins, and nutritional supplements, exercise programs, pseudo-religious/Eastern-appropriative hand-wavey woo, and many others are regular characters on the cast of alternative medicine solutions for fibromyalgia.
I’d say I’d already been pitched every one of them at some point or another, but that understates the sheer vastness of this field. Probably a hundred new “treatments” have popped up in the time it took to type this sentence. Needless to say, I think I’ve got the general concept down pat, thanks.
What makes it dangerous when someone tries to sell me one of these treatments, and hell, not even just the “alternative” ones, is very similar to why it can be dangerous for a sexual assault survivor to read past a trigger warning. It chips away at the defenses you have built to protect yourself from future trauma, and it whisks you back to the trauma you have already experienced, and abuse survivors will know what I mean when I say it returns you to the frame of mind that you had when the abuse occurred. You don’t just remember the event(s), you remember the way you thought around the time the event(s) occurred.
In my case, it takes me back to the frame of mind I was in when I was first diagnosed. It’s the frame of mind that says, you’re normal. The frame of mind that says, nothing is wrong with you. The frame of mind that says, push forward. The frame of mind that says, you’re imagining things. The frame of mind that says, you can’t trust your own perception.
And really, that’s what it boils down to. It’s an assault on the protective framework I have built for myself. It tells me that I can’t trust myself and the way I see things right now. It tells me that other people’s perceptions are more important than my own. It tells me that other people’s opinions override my own. It tells me that other people get to decide my life.
And you aren’t really trying to decide my life when you make these suggestions. You don’t feel that way, anyway. But that’s not what matters. What matters is that I spent the better part of twenty years saying “yes” to every invitation, taking seriously every criticism, and spending all my time worrying what other people thought of me. I spent that better part telling myself I was faking it, exaggerating it, imagining things, while also taking to heart every suggestion that I just think positive/get some sun/take a walk/write a journal.
I spent that better part mired in self doubt, always questioning my own thoughts, experiences, and feelings, while immediately accepting everyone else’s without a second thought.
Over the past five or six years, I have slowly, carefully, and deliberately built a protective wall around myself, re-trained myself to think, behave, act, and react in certain different ways, and made a concerted effort at re-gaining my own trust.
The thing is, though, as any survivor will tell you: That wall is not impenetrable. In fact, every little assault chips away at it, slowly but surely. And sometimes, I have enough of a buffer built that that one casual comment won’t faze me, all told. But sometimes, the world has not been so kind, and my defenses are significantly worn down, and all it takes is that one stray comment.
And I’m back in that frame of mind again. I feel OK right now, why don’t I go move around all my furniture? or I’ve been very absent lately, people might suspect me, I’d better not decline any requests or invitations for a while or you know, this person was just trying to be nice, and maybe they’re right, I should have an open mind, maybe I should try whatever it is they’re suggesting even if “what they’re suggesting” is “just stop thinking about it so much” or “don’t sleep so long” or “exposure therapy.”
And even a very small time in that frame of mind can have very long-lasting effects. It isn’t just a couple moments of self doubt and then move on. The decisions I make when I am under the influence of that kind of thinking means I am going to be feeling those “couple moments” for a long time.
That’s just one person, and that’s just one condition. But my bet is that the same general thing also goes on in people with depression. Or with lupus. Or a lot of other “invisible” conditions. But even some of the “visible” ones sometimes too.
Certainly a few of those 49.
You say you care about the well-being of people with disabilities. What about those?
Or do they not matter if they are not stroking your ego in the process?
It’s harsh, isn’t it?