Category Archives: life changes

Fighting To Get Back And Other Cute Metaphors

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

A while back I wrote a little bit about Permanent Limited Duty, or PERMLIMDU as we called it in the Navy. It is the status you are placed in when you are injured or sick enough that you can no longer perform your job to military standards and the military has a board decide how much you can do, how long you can do it for, blah blibbity blah.

I also get a daily subscription to the Stars and Stripes newspaper because I like to read while I am on the toilet. It seems appropriate.

So it stands to reason that I would come across this article from Stars and Stripes (the online and the paper may vary a bit, I haven’t matched them up side by side, but there is usually a slight variation if I can find them in both mediums at all) about servicemembers who are “fighting to get back”. Actually, in the online version the headline uses a cute joke “but results may vary”. I tried hard to laugh. *ahem*

Now, let me be perfectly clear: I applaud the efforts of the military members who worked through their injuries and fought to return to their jobs. I hesitate to applaud this type of story, because these always, always, especially when covered by the military, feel “inspirational” to me, even though the veteran in me applauds the veteran who is them, irrespective of the intersection of race, gender or other marginalization, for getting back to any kind of duty status. Because the military is an animal that will eat the less than perfect alive and shit them out and bury them, forgetting they ever existed.

According to the article, “200 soldiers, 58 Marines, 33 sailors [I would have been 34] and six airmen have petitioned for, and won, the ability to continue to serve even though the military has found them unfit for duty”, which is nothing short of remarkable considering the way the military has about tearing people down. What is interesting is this article and the way it highlights some aspects of this marginalization, and glosses over others altogether.

Most interesting to me is that of all of those people, they could not find one woman to highlight? Hmm… funny that. I can’t imagine that not one of those many people who came back to PERMLIMDU status was a woman.

Most aggravating to me was the story of Spc. Jake Altman, whose story was almost presented as a he-said, he-said, except that they casually dismissed Altman’s feelings of being mistreated. He mentions being put on patrol in a damned war zone without his prosthesis, because his superior said that it looked like it was hard for him to see others doing it better than him. So, what? Was it Sgt. O’Brien’s job to teach Altman a lesson in hard knocks? Because something tells me that Altman had already skipped ahead a few courses in that one and could happily give O’Brien the Cliff’s notes explanation. Not that I think he would listen. Because a good number of TABs tend to not really try to get it when PWDs try to describe their experiences to them.

Altman contacted the Warrior Transition Unit, a wonderful thing the Army has going on, and has eventually sought discharge. I can empathize.

Because at the end of the day, no matter how much you want to stay in and do the job, what others think and how they treat you matters. It matters enough to drive you out. I think that if someone did a study or a survey or wev, they would find that people who transitioned out of the military due to illness or injury might possibly have depression due to a crushing loss of the camaraderie, but that is my lay opinion based on my own experiences.

The dismissive air of the article over Altman’s attempt at returning to deployment, and the following segment, subtitled “Up To The Challenge” as if Altman somehow had a moral failing, as if the treatment of those around him, who judged him outright and convicted him of being less-than due to his injury.

My job in PERMLIMDU would have been much different. I am not even exactly sure what it would have been, to be honest, because… well, in my mind I still gave up. Getting injured in the military, or ill, or anything that makes you less than a perfect TAB specimen, eats you alive. It starts to kill you from the inside, knowing that you are a failure, because you have been conditioned that anything less than the best is unacceptable. The glimmer of hope that is PERMLIMDU gives you back a sliver of that self worth.

How Many Straws?

A blue and white lane-marking buoy in a swimming pool.I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

Guest Post by Sasha Feather: Book Review of The Rejected Body

Editor’s note: We are very pleased to host this post from sasha_feather, who has previously written for FWD: AWP: Crutch. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.

Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom

Book Review of The Rejected Body by Susan Wendell
by sasha_feather

The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell
1996
206 pages
Routledge Publishers

If you are at all interested in Disability Studies (DS), I strongly recommend this book. I felt like I had a kind, clear teacher and friend leading me by the hand through basic and advanced concepts in DS, especially relating to feminism and ethics. It is the most accessible and worthwhile academic text I’ve ever read– I don’t have a good track record for reading non-fiction books or textbooks, and I was riveted to this book. Partly this is because The Rejected Body speaks so directly to my own life experience as a person with a chronic illness. Susan Wendell also has a chronic illness, ME/CFS, which is what led her into DS from Women’s Studies.

In the introduction, the author tells you what she’s going to tell you, talks a bit about her own illness experience and finding disability identity, and–making me fall in love with this book–clarifies her language use by, in part, defining scare quotes and why/how she uses them:

“Throughout the text, I use single quotation marks as scare quotes, that is, to draw the readers attention to concepts I question or to uses about which I have reservations. For example, I use scare quote around ‘The Other’ (a concept discussed in Chapter 3) to indicate that, while the concept is a recognized way of thinking about people who are different from oneself, ‘the Other’ is not a way of referring to people which I accept or take for granted” (Wendell 7).

Like many of us I had often heard both the terms “scare quotes” and “the Other” and never really thought about what either of them meant. This book is full of little moments like that– things that I had taken for granted or that had niggled at my brain, and which the book shines a bright light upon.

In the introduction, Wendell also notes the limitations of the book, mainly that it focuses primarily on physical disabilities, that the author does not attempt to speak for all people, and that she struggles with generalizations and use of language. And that’s just the introduction!

A few of my favorite parts that I would like to highlight:

*The pace of life. As someone with fatigue and pain, Wendell is interested in the pace of life as part of the social construction of disability. Those of us who need to think or move more slowly than others are thus disabled by society. She discusses the social construction of disability in chapter 2.

*The mind, the body, and suffering. I have been thinking about embodiment lately, brain-body duality vs. integration, and chapter 7 (“Feminism, Disability, and Transcendence of the Body”) really gave me some grist for this mill. I am going to re-read this chapter shortly, especially the section on pain. Basically, feminists have argued against mind-body duality for very good reasons: because this concept has been used against women’s bodies. We’ve been invested in “Our Bodies, Ourselves”. But for bodies that are suffering and in pain, there are reasons to want to transcend the body, and there is room within feminist frameworks to develop such an understanding: of being embodied, of having bodily autonomy, and yet still wanting to transcend the body and be less tied to the body’s functions, desires, and pains.

*The illusion of control. For PWD, we know that we often do not have control of our bodies, or at best have limited control, and it is sheer luck that determines what happens, a lot of the time. Will I be in less or more pain today? Will I get some new illness? I have basically no control over these things, and I know it. And yet the society I live in is incredibly invested in the illusion of control to the point where it is part of the mythology of my country and my people. As Wendell points out, this puts me at odds with the people around me, even in casual social situations where people talk about small health problems or things to do with their bodies. It’s a disconnect.

*Having no diagnosis Wendell specifically addresses issues of disability for people with no diagnosis. There are a lot of people in this category, and it sometimes can feel like there is no place for us, no identity, especially within the medical model. The disability community, in my experience, creates a place and identity for those of us without a diagnosis.

There were so many other things that I am probably forgetting. I wanted to underline everything. I read it slowly to give myself time to process everything I was reading, but overall it’s a fairly short and accessible book, just densely packed with great information and ideas. Note that because it’s published by an academic press, it is relatively expensive; I recommend searching World Cat to find copies in libraries near you.

Moderator’s note: Moderation on guest posts is often much slower than “usual” moderation times.

Food.

Earlier this week, Don started his “low-iodine diet” in preparation for exciting radioactive iodine therapy next month. He tells me he’s not allowed to eat milk or milk-products, soy or soy-based products, egg yolks, anything from the sea, iodized table salt, and all restaurant foods.

Food restrictions are pretty common for people with disabilities. A friend of mine discovered her chronic pain and fatigue was influenced, at least in part, by her wheat allergy, and described at length to me the perils of “hidden wheat” in things like Twizzlers, which is a brand of red liquorish available in North America. Another gets flair-ups if she thinks about stepping away from her gluten-free diet. Some people have serious allergies to corn, and must avoid any and all things with corn and high-fructose corn syrup. There are very specific diets required for people on certain types of medications, with certain types of short-term and long-term medical conditions, people with diabetes, and people preparing for types of surgeries. Many people recovering from Cancer treatments, surgery, or eating disorders, as well as people on certain types of medications that cause dramatic weight loss, are pushed (or required) to consume those “nutritional shakes” or other forms of meal replacements.

You know what’s fun for most of the above?

How incredibly expensive all of this stuff is.

So, let me go back to Don. Right now, all of Don’s favourite foods, and everything we’ve had stocked in the freezer, are off-limits. He tried to pick up rice milk so he could have some cereal, but surprise! Most rice milk in Canada is made with salt, except a very specific (expensive) brand that isn’t sold at our grocery store. So, either we need to go to the more expensive store downtown, I need to make rice milk (I have a recipe), or he needs to not have milk with his cereal for the next two weeks. We can’t find any bread we can guarantee is made without salt, so either he goes without bread at all, or someone makes him special salt-free bread. Today, while I was away, I think he ate some special, expensive, peanut-only peanut butter and salt-free rice cakes.

Because I’ve been busier than anyone probably should be, we’ve mostly been relying on very cheap, easy-prep frozen meals that are basically salt with food in between. I’m no less busy, but now Don needs to be eating so-called “real” foods that are time-consuming to prepare, and often very expensive to purchase, especially in comparison to how we normally do the food-thing.

If you’re not on a restricted diet, I recommend checking out some of the “special” foods that people on restricted diets need to purchase. See how expensive gluten-free foods are. Compare prices of cow milk, soy milk, rice milk, and nut milk. See how many things have “corn” in the ingredients list, and try and sort out how expensive it would be to try and eat nothing with corn in it, while still eating enough. Look at some of the stuff on the shelf and try and sort out what has “hidden” wheat in it.

The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries. Don and I are able to afford to spend extra money on this restricted diet because of family support, but this isn’t an option for very many people. If you do not have a restricted diet, imagine trying to afford the foods that allow you to eat without causing flare-ups in your chronic pain condition.

Imagine as well – and this, of course, applies even when one doesn’t have restricted diets – trying to put the energy and time into preparing these foods when dealing with second shift for the sick. Imagine trying to balance it all while some stranger tells you that your, or your kid’s, disability can be magically cured if you put your family on a special, expensive, restrictive, time-consuming diet.

Don and I are incredibly privileged in this. I can take the time and make him rice milk so he doesn’t have to eat dry cereal, and we can afford to run out to the store and buy those pricey egg-whites in a carton things. And this is a restricted diet he needs to be on for a little over two weeks, and then it’s done. So many people with disabilities do not have these options. It’s eat stuff that makes you sick, or don’t eat enough at all.

I wish I had some solution I could offer to this problem, some nice little bow of hope I could tie this post up with. All I have is the knowledge that these restrictive diets aren’t things people are on for fun, but because the alternatives for them are sickness or pain. And yet, the foods people are required to eat are priced like they’re luxuries.

Tasting Fear

[This here is a warning that the author has written a post about, amongst other things, being depressed and suicidal. For this reason there is a clicky thing. Use it in whatever health you got. Also please note that with respect to my wife and our marriage you are getting exactly one perspective–mine–and everything is filtered through my experiences of abuse. This is not an objective reporting of events.]

Y’all who’ve been following this adventure know I’ve been fucked up for a while now. It’s been next to impossible to get any work done–it took me until five-thirty this morning to get caught up on my inbox. Today I got to explain why I should keep my job. On the phone. I don’t know as I was very convincing. Being highly ambivalent about wanting to keep it at all isn’t helpful with the convincing. Nor the panic that comes with phones, the stammering dysphasia aphasia that is so heavily influenced by stress.

Maybe I’ll get to keep it through the end of the month. I keep telling myself I should be at my desk now working.

I’m in bed with the notebook and I haven’t gotten dressed. I woke up six hours ago. Continue reading Tasting Fear

Dear Imprudence: A “Tired Wife” Strikes Back?

The hits just keep on comin’, thanks to Slate. Earlier this month in Dear Prudence, we got to read this winner:

Dear Prudence:
My husband had a stroke 18 months ago. At first he was unable to speak and his right side was paralyzed. He regained his speech and, with a lot of work, got full use of his arm and leg. But the stroke made it impossible for him to practice his profession, and he continues to have short-term memory problems. He’s home on extended leave. My problem is that he is obsessed with what he has lost and how bad things are. When I come home from work—I have to keep us fed and housed—all I hear about is what a terrible state he’s in. I’ve tried various things: We’ve gone to a counselor, his doctor has given him anti-depressants, I’ve encouraged him to go back to his hobbies. I try to plan things that will be enjoyable for him. Nothing is working. He won’t take up his hobbies or socialize, and he dwells so completely on the negative that even his closest friends are getting weary. It seems to me that he should be grateful he survived and regained so much. I am so exhausted by his negativity that sometimes I just wish I could leave him, but I would never do that. Is this the way it’s going to be forever? –Tired Wife

First, something tangential: Is this not THE perfect mishmash of weird disability-related hangups from an abled person plus some lovely Feminine Mystique-era gender(ed) expectations? It’s like it was made for a takedown on this site.

Moving on: On one hand, I can certainly see why this woman is frustrated. Adjusting to newly-acquired disability can be an extremely difficult process — not only for the person with the disability, but for their relatives and loved ones as well. However, there are a ton of stereotypes made explicit in this woman’s letter, not least of which is the “he’s just so NEGATIVE!” and the related expectation that her actions and her efforts will somehow make him become a happy, compliant Good Cripple. I have to wonder, has she stopped to consider that adjustment to disability is a long process? Or that having to go on leave from one’s job due to a newly acquired disability might, in fact, be extremely taxing on one’s self-image? Apparently not — all that matters is that he show proper gratitude (and non-“negativity”!) for all of her efforts, and not trouble her with his “dwell[ing] completely on the negative.” I am sure that many of us would find it hard to be “grateful,” too, if we had someone treating us this way due to our disability (or disabilities). Once again, a disabled person’s feelings and experiences are steamrolled over in favor of those of a person who is not disabled, and this is apparently acceptable because they are in a relationship.

The gender question, too, is worth a look; while it’s pretty common knowledge that women, on average, do much more “caretaking” work inside the home than men (at least in the U.S.), there are a few things that stick out, mostly based on what the letter writer does not mention. Was she primarily responsible for managing her husband’s schedule and social life before his stroke? If “nothing is working,” has she spoken with him about it? Please understand that I am not trying to blame her for larger sexist patterns of who tends to do the home-related care-taking and who does not; it does, however, seem odd that she has not (as far as we know) attempted to speak with her husband about this — his “negativity” nonwithstanding.

The sense that I get from this letter, overall, is that this woman has spent a huge amount of time and energy trying to fulfill the role of the “perfect” wife, and now that her husband cannot fulfill the complimentary “perfect husband”/breadwinner role, her resentment is close to bubbling over. Add to this much of mainstream white, abled feminism’s emphasis on “independence” — which seems to exist in a magical land where no one is (or should be) dependent on anyone else — it is not terribly surprising that she feels that her only option would be to leave her “negative,” disabled partner. That these seemingly opposing tendencies could show up in one letter is not surprising, either.

So, what do you think, commenters?

A Difference in Perspective: Experiencing Avatar Exceeds the Marketing

We recently took a family excursion to the theatre in Seoul to see Avatar (and we can discuss our decision to take The Kid to see it another time, as in, not at all). I thought I would suck it up and see it as a service to the rest of the team here at FWD so that I could write an honest review from the perspective of someone who has been sheltered from the marketing of the movie. You can thank my language barrier and the reluctance of Hulu to stream in our country. Wev. As you may know, the marketing of the movie and views put forth by some of the actors kicked out some seriously ableist themes. After reading this transcript of the interview with the lead actor I was prepared to not like the movie at all because of the Bad Cripple message that I got from that video, the caricature of the disgruntled former Marine, and a lot of the other tropes that were chucked out there in a lot of the reviews. In fairness, I tried to not read a lot of them so that I would come into this review with a clear mind.

I was completely prepared to hate this movie.

I pretty much surprised myself and enjoyed some parts of it. Or the parts that I feel were realistically portrayed.

That is not to say that most of this movie was a big pile of fail from a feminist perspective.

To be fair off the top: This movie is pretty fucking racist. But guess what?

This is not the first time this story has been told with this theme, so I consider myself kind of inoculated to it at this point. By the time I had seen Dances With Wolves, Pocahantas, The Last Samurai, Fern Gully, and several others I am sure could come up on a more comprehensive list, I was used to having the “White Guy meets Native Group of people (and is either supposed to betray them or not), becomes accepted into their culture, and then falls in love with Native Woman or Culture (or both), and ultimately becomes the savior of Native People” movie shoved at me every Award season. Understand me when I say that I am not OK with the implications of this; I am simply becoming numb to the experience and how ingrained it has become.

Here I go. Oh, and: EXTREME SPOILER WARNING!

LAST CHANCE TO TURN BACK FOR SPOILERS

SPOILERS!

Despite what I believed going in, Jake Sully was not a disgruntled Marine who believed that he had to get his legs back in order to be a normal human being. He wasn’t seeking the Avatar as a vehicle to deliver this to him; I found his desire to be in the Avatar directly linked to his desire to be with the Na’ Vi people in general, as he had fallen in love with them and the Cheif’s daughter (if this sounds cheesy, don’t blame me. I think Cameron drank some bad milk before writing some of the dialogue). There is one scene where Jake first enters his brother’s Avatar that he excitedly runs about the garden and experiences using legs again… curling his toes in the dirt. I am not a wheelchair user, nor an actor pretending to be one, so I don’t know what it would be like to live in either of these situations. I can imagine that being a veteran, and having your worth tied to your abled body must be an experience that changes the way you view disability.

Jake Sully’s desire for getting his “real legs” back is directly linked to his feelings of self worth as a Marine, and the actual caricature, the Marine Colonel Quaritch, does nothing to make him feel differently, but rather offers to cut red tape with the VA (who apparently is still a shit pile of failure years in the future) in exchange for Sully’s promise to sabotage the Na’ Vi from inside. Jake isn’t the brainy super genius that his twin brother was, who was able to help pioneer the Avatar technology. Sully was only valuable for the parts of his body that the government needed. Before it was his legs that could carry him into combat, and now that those were no longer doing that, I got the feeling that Sully was struggling with what he was supposed to do now. Then, in a brilliant plot device, his amazingly intelligent and never appearing in this film twin brother, conveniently died leaving him to be called up because he has the correct DNA to sync with the avatar. The reality of Jake Sully’s life isn’t that he is an ableist jerk… rather, he has only ever been as good as what his body has to offer to the government. This is reinforced by Doctor Augustine, when she uses a constant barrage of insults against Sully’s mental acumen. He doesn’t measure up to what his twin was capable of.

Jake Sully, is, again, told he is not good enough by the able bodied world.

I don’t view these as the same thing. This isn’t a disgruntled Marine. This is a society that hasn’t learned how to accept a person outside of the standard, and doesn’t yet know how to accept them into their perfect world. Society doesn’t know what to do with a Jake Sully because it doesn’t want to…and why should it? It will just cast him off and get more fresh, able bodies to replace him. He isn’t their problem any more, right?

So, it is easy to paint this movie as ableist. I was ready to cast it aside as such, probably because I already hold James Cameron as a misogynistic douche nozzle and a racist ass hat to boot. I want him to fail at this too. But what he has done here actually impressed me a little (even if the actor’s own words betrayed the sentiment). He managed to show the real pain of a veteran, separated from the only thing that has ever given him a connection to anything useful. He has shown a disabled person living in the actual world…and sadly it still exists in the future.

The rest of the movie, despite being fucking gorgeous, is a pile of tropes waiting to spring forth. Despite decent performances from actors and actresses that I adore (Zoe Saldana, Giovanni Ribisi, and Sigorney Weaver), it was cliche. You want bad ass military chick who loves to blow shit up? We got that! (she dies) We have a chief’s daughter who falls incredibly in love with the mysterious outsider! We have the White Guy pretty much slaying the dragon (almost in a literal sense), and the hot warrior chick rides off behind him on its back. I almost choked on my popcorn when I saw him waving a machine gun around in the jungle as he led the natives to battle. How about the tree hugging White woman who wants to preserve the culture of the Natives because they can’t protect themselves (she dies).

All the CG in the world can’t cover up a bunch of “been there, done that” bullshit.

I leave you to your own thoughts.

Discuss.

One Sided

Ten years ago I joined a club.

You don’t have to say anything about it. It is something I have (mostly) come to terms with. I only bring it up to give a little context.

I have a father out there in Meat World somewhere. I differentiate for a reason, and no, I Don’t Want to Talk About It. We have met twice ever. Once I stayed with him, my former step-mother and two half brothers for a few weeks. Over the twenty years since then we have had few enough phone conversations, emails, and letters that I can count them on my fingers. I don’t need all of them. At least one hand’s worth are those initiated by me. Every now and again he would pop up in my life and make some n00bish attempt at contact with me. It never lasted.

Somewhere along the line I decided that I am worth more than a one-sided relationship. I don’t have the spoons or the emotional strength to give to something that is that unstable. I recently wrote him, laying out the terms I required of him if he wished to have any more contact with me or my family, and that if they were acceptable that he would write to me right away.

I wrote that letter a year and a half ago before we moved from Hawai’i.

I probably don’t have to say that I didn’t receive a reply.

It pained me for a while, until I realized why I made that decision.

I bring him up to make a point.

Because I need to focus my spoons on relationships that give as much as they take. I need to make sure that the relationships that I am working at putting my valuable spoons into are giving back to me. I deserve to be valued as much as I value. I deserve to know that the person whom I am spending my precious spoons on gives a fuck that those spoons have value and that a gesture like a phone call, email, mailed letter or card are not just something that I do offhandedly. Those gestures take time and physical resources on my part.

And I deserve to be a part of a relationship where the other party recognizes that, and can be arsed to give a little of that back.

Sure, I am not always the best at correspondence, but email, Facebook, and a few other electronic mediums have given me back a bit of that. I have managed to make contact with people that I love and care about, I have managed to forge new friendships, rekindle old ones, and build bonds that I need. And those people, who care anything about me have shown me that they can do the same. Those who don’t use these mediums call or write, and I feel appreciated or loved. I feel as if my spoons matter. I have even managed to connect with a sister that I didn’t know until recently, and it has meant something that I can’t describe. That is saying something for someone who works as a freelance writer, and who talks as a nervous habit.

I have made the conscious decision to conserve my spoons by moving past relationships that are one sided, and trying to recognize when I need to leave ones that I have grown out of, even if the other parties don’t recognize it, or won’t say so to me. By choosing not to spend my life resource on something that isn’t symbiotic, so to speak. I need to know that I am appreciated, and that my time and energy is acknowledged. I need the people who claim to care about me to acknowledge that my resources are limited, and that my energy is precious to me and my family. That a phone call, letter, card, email, or other means of my reaching out isn’t just a fun thing, but a tap on my limitations.

To some it might sound selfish.

But maybe, just maybe, it is time that I include a little selfishness just for me so that I can save those resources for the people that can be arsed to say “I acknowledge and appreciate you”.

We all deserve that.

Thoughts?

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.

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.