This post is republished by permission of the author, Oji Dannelley aka Paidir a Iompair (paidiraiompair). This essay was first published on 2008-08-11 in the gimpgirl LJ community, an extension of the GimpGirl Community, a place where women with all kinds of disabilities (and abilities) have come together to talk about what it means to be a “gimp girl” since 1998.
As I gear myself for another long vacation out in the world, you know, making all the advance arrangements that come along with disabilities, my mind went back to this “essay” of sorts I wrote a few months back. It was originally a sort of “stream of thought” inspired by my frustrations on the ignorance and judgement of folks I dealt with at the time. I shared it with some of my “like capable” friends, and with their help corrected my grammar and encouraged me in my “voice”. I wanted to share it here, moderators willing. As stated, there are as many thoughts on this sort of thing as there are people to think them, but here is how it is with I and mine.
Over the last many years I have struggled with physical limitations. I and a few friends like me, have come to call ourselves “Border Gimps”, especially since society not only loves to have a name for things, but also to help sort through the current “P.C. phrase of the month”. Now I know there are as many thoughts on that sort of thing as there are people to think them, but here is how I and mine define it.Border Gimps usually have some capacity to stand, likely even to walk, in one mode or another. Our bodies are usually all intact, just not 100% functional. Our issues are usually more related to the pain surrounding mobility in general. We go to doctors when the problems begin. This is often a long, multi-layered journey, at the end of which modern medicine provides little to no solutions for us. We usually have a mixed status officially, as in we probably won’t qualify for any sort of governmental disability assistance, but most of us have tags, called “rock star” or “princess” parking passes, for our cars. Some days, we might appear completely “normal”; others, our young or middle-aged bodies betray us into the stance of the very elderly. Likely, we have no control or way to predict what “status” any given day will bring. We spend our days on the border between “capable” and “handicapped”.
When you are a border gimp, one of the first things you’ll realize is that you are never enough of any one thing to please anyone. You can walk, perhaps with a decisive limp, but you CAN do it, appeasing those who are concerned that you will need special accommodations. When you walk, pain is always apart of the decision so you get really good at hiding it, a relief to those who are made uncomfortable from your mere presence. You find convenient excuses not to travel so long or so far. You learn to always have everything at hand. When you do move, you do so slowly and carefully, holding your body as firm and as erect as you can. You keep close to walls and other stable objects to catch an unexpected fault in your stride. You smile a lot, so folks don’t look too closely at the unavoidable catch of breath or flinch of pain. You’re clumsy but less an obstacle than in your chair. The chair gives you mobility but the world limits where you can go. First outings in chairs demonstrate just how “handicap accessible” the world and people around you, really are not.
Folks either can’t look away from you, or refuse to see you at all. Your very presence makes them uncomfortable. They don’t know how to act, so they either fall over themselves (and you) to “do” for you, or sprint and dash to get away from you. Either way, they wish you had just stayed at home.
People always want to know when you’ll “be better”. Why were you able to “walk” with a cane yesterday, but are in your chair today? They think to themselves, “There is NOTHING in this world that would put me in a wheelchair; I’d go down swinging.” They secretly think you are a pretender to the handicap world. You must be in it only for the “attention”.
There are medications to ease the pain, but even they are a double-edged sword. If you take them, you are “better”, in that you are more mobile, less “gimpy”, and easier to be around. You are also judged as an “addict”. You are weak for not just “powering” through your pain with guts and guile. Surely exercise, meditation, biofeedback, yoga, acupuncture, prayer, crystals, and determination can overcome any hurt better than “drugs”. There is the perpetual “have you tried….?” Everyone knows someone who has just what you have and tried whatever he or she is suggesting, and since it worked for them, it must be the cure. If you are relying on pills, then you have “given up”.
Border gimps know that we HAVE, in fact, tried it all. We have allowed doctors and healers to poke, prod, prescribe, inject, inspect, and x-ray and MRI us to the very limits of our ability to withstand physically and our ability to pay financially. But whatever our reasons, (and they can be complex and varied), there comes a moment when we are face to face with a physician who eventually throws up his or her hands and says “there is NOTHING I can do.” We have to accept that even “modern medicine” can’t fix everything, and it cannot fix us.
It is usually at this point that one of two things happens on the medical front. One, the doctor decides that since there is no “treatment that will lead to a cure”, he or she is done with you. That’s the dreaded diagnosis of MMI, Maximum Medical Improvement. Even if you are still “broken” you are expected to be resigned to your fate. Yes, your pain, your symptoms are still ever-present, but since there is no prize of making you better, the doctor shows you the door. You are left to “just deal with it” for the rest of your life. One doctor, who by the way, had admittedly NEVER laid eyes on me, told me that I could “walk enough”. Another told me, that though there were “abnormalities” in both MRI and x-rays, what I had wasn’t, in his opinion, “significant”. He was once a physician for a major league football team, and THEY played hardball all the time with “real” problems. Life sucks; get a helmet.
The second thing that happens is that they turn on you. Since they cannot figure out the “why” of your affliction, then there is nothing wrong with you. You are lying. You are exaggerating your plight. You are an attention seeking, drug-addict who is a weak, lazy, mentally unstable drama queen. No, they are not going to “treat” you anymore, because there is no “treatment” you responded to. You ask what to do, and as one doctor said to me, “Well, just stop it”. Stop using a cane, stop walking with a limp, STOP being a whining pansy and just “pull yourself together”.
It is about at this point that most border gimps buy into this crap. It is one of the stages of grief; denial. We are not only in mourning for our lose mobility, but are told the lost is all in our heads. So many of us has give up to the doctor’s logic and said, “Well, I am all better now”. Even with or without pain medications, we push our bodies to the breaking point to prove to ourselves that we were just being weak and silly. During this time, we power through each day in mind-robbing agony. We swim the river of denial. Our overtly brave happy faces turning on a dime to “unexplainable” tears mixed with random rage. We do more than “seize a day”; we wrestle it to the ground, punishing ourselves with pain in frustration that our will alone cannot conquer our condition. We give ourselves no mercy, because no one “believes” us. They say what we feel isn’t real. We do this until our bodies give out. One day, there is no mental will or physical strength to get out of bed. We sink into a depression, hitting a wall without socially viable choices.
This is when the border gimps find they cannot physically live the “lifestyle” of a full time bi-ped. We want a life that is as rich and diverse and yes, even as free of pain, as anyone else. The smart ones begin to be their own advocate. If they are lucky, they have support of loved ones who will stick up for their right to make their own decisions about what sort of life they want. The very determined stick to their guns until they find a doctor who is more interested in helping them achieve that goal than “fixing” them. We want to STOP being patients and get on with whatever we were doing before we “starting going gimp”. But those of us on the border have to first buck up to one major fact. There will ALWAYS be people who are going to disagree (sometimes loudly and obnoxiously) and criticize our choices. We must, unfortunately, come to terms that those people who do not know us, do not know our struggle, and do not know our bodies can go straight to Hell.
There will be prices to pay for this force of independence. If we make concessions to our bodies, be that a cane, a walker, a chair, we are exhausted by having to “justify” our daily choices. We have the ABILITY to walk, no matter what else is involved, so why are we drawing attention to ourselves and inconveniencing everyone around us. If we educate ourselves and conclude that pain medications in some combination remove some of the hurt and enhance for our own decided quality of life, again we are judged. Anything must be better than living “dependent” on “drugs,” say people who have never lived day after month after year with constant, unfixable hurt. Who wouldn’t wish to live a life in which the daily choice isn’t “pain or brain”? The fact is, time factored by education and experience gives one the right to make choices for oneself. If others think they “know better”, there is no way to change their minds.
Sometimes worse are the “well wishers” those who can’t help but “bless us” as if we were dying victims. They tweak their voices into the same high pitch tones one uses for simpletons and small babies. I have a blind friend who laughs when people speak “clear and slow” for her to better understand them. We will often suffer as politely as we can through their easing of their souls to tell us we are “so brave”, “a trooper,” or the worst of all, “an inspiration”. We know they think they are being kind, but they do not know that all we really want is to go about each day just like everyone else. Good days and bad.
In my own life, I often attempt to cut these nice folks off with humor. It is how I have always lived, finding as much laughter in this crazy existence as I can. Yes, it IS a mask sometimes, but one that many use without malice. I smile as they fumble with which PC term I might be comfortable with, and then I let them off the hook. “I am a gimp, you are a bi-ped. You annoy the shit out of us,” I add, with the same silly tone of a good Southern “bless your heart”. They can’t help it, so I try to move along.
Border gimps, however, are often those with “invisible disabilities” on good days. Please know, we do understand and appreciate what our bodies ARE still able to do. We have choices that others do not. We are wheelchair users, not confined to a chair, and we know the difference. (BTW, lots of gimps of any stripe HATE the phrase, “confined to a wheelchair” so all you bi-peds make note NOT to use it). Yes, for some of us, we must face that eventually those choices will become more and more limited, as many of us have degenerative problems that will only become worse with time. Yet all of us only want to have the best quality of life, which is what all humans strive for, or I optimistically hope they do.
Life is a struggle, and all of us have our own “box of rocks” to tote around. We like to give names, labels, to the weight of those stones, so we can identify them when we see one. It has taken me a long decade to come to understand all the names I carry. So all these words are written just to be a voice for those like me. If you read some truth from your experience, then know, “I am a Border Gimp too, and we are not alone”.
Categories: language, Life, social justice, Sociology
I don’t have mobility issues that are quite as bad as yours, but I have chronic pain from endometriosis. It’s a never-ending merry-g0-round of drugs and pills and birth control and surgery. And people look at me, with my near-ideal BMI and strong looking limbs, my healthy complexion and my reasonable looks and they think, “Well, clearly there’s nothing wrong with you.” If I had a damned dollar for every time someone told me to just power through, just suck it up, just put that extra effort in, I would have a whole heap of dollars. “If you can do that, then you can do this.” “Why can’t you just walk to the station?” “Why can’t you just take public transport?” “But surely you can catch the bus, can’t you?” “Why is your room a mess?” “You need to get your shit together.” “What will you do with your life?” “You should never have kids, it would be selfish, you couldn’t look after them.”
When I finally found a doctor that took me seriously, that *didn’t* think I was a hypochondriac, that respected that I knew how to listen to the rhythms and messages my body was sending me, and that gave me some proper pain relief, I cried. I actually broke down in the office and thanked her. She’s the best doctor I have *ever* had.
The thing is, when I try to reach out for help in the disability community, I feel like an interloper, a charlaitan, because I can walk. Sometimes, some days, I can walk a fair way. Some days I can get a lot done. And then some days, I’m on ridiculous amounts of codeine, barely able to move from the aching and the nausea.
So the “Border Gimp” idea has a lot of resonance with me. Though I’m probably to border for even the “Border Gimps”, as I don’t use a chair or a scooter. Though there are days where I wished upon wish that I *did* have one, that I looked longingly at a wheelchair or a scooter and thought, “God damn, I just want to sit down for a *minute*, I can’t take this pain a moment longer, but I don’t want to stop shopping, I don’t want to go home!” The last time I floated the idea of getting either of these things, everyone I knew freaked out (except LauredHel, who was awesome) and said that it would make everything worse for me.
This all reminds me that it’s time for my morning painkillers. Great essay, Paidir A Lompair. I felt it.
In the experience of some people that are very close to me, we’ve found another medical response: blanket or vague diagnoses, more or less like this: “if you have physical pain that I cannot diagnose or treat, that means you probably have the condition that I diagnose when everything else fails”.
I really appreciate this piece. Thank you for sharing your experiences.
Thank you so much. I can’t even tell you how much this resonates for me.