Tag Archives: justice
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.
Disability issues overlap many facets of life, and one of our goals here at FWD is to bring as many of those to light as possible. One voice I want to offer here is that of the disabled U.S. Veteran. Specifically in feminist circles I feel that the disabled veteran is a voice that is seldom heard, and while hir voice may be part of a very small percentage, sie is facing a unique set of challenges.
One of those challenges is getting a diagnosis and care in the first place. A person gives hir time and life to the military for one of a variety of reasons and find hirself trained for any number of jobs. Sie can travel the world, see exciting places, or be sent off to fight in wars. In the blink of an eye hir world is turned upside down. Suddenly life isn’t what it was before. Hir body/mind/soul are not what they once were, and coming to terms with that is no easy task. If sie is one of the ones who has survived combat injuries or someone who became sick or injured while doing hir job in a Stateside base, sie does what sie has been taught to do…sie makes a routine appointment at the local Military Treatment Facility (MTF) to see her Primary Care Manager (PCM).
Hir PCM might evaluate hir, refer hir out for tests with specialists, or set hir on a merry-go-round of treatments. When the ride stops sie may or may not have any answers, and there may or may not be a Medical Review Board pending to tell hir the terms of the future of hir career.
This is where things get interesting. By interesting, I mean kind of fucked up. One, any or all of those specialists might have diagnosed hir. Those doctors start treating hir accordingly, because while TRICARE (military medical insurance) has its flaws, it kicks a lot of arse, and sie gets the care sie needs, mentally and physically (until her PCM deploys, but that is another post altogether, just you wait!), all under the umbrella of hir diagnosis. But then the Medical Review comes up, and all of hir doctors have to write these recommendations, and suddenly things change in terms of hir care. In hir appointments hir doctors start getting vague about care plans, and start talking around the actual words for hir condition…sie might suddenly feel dismissed or as if hir questions are not being answered.
As we read earlier this year, it isn’t a coincidence that military doctors are getting dodgier than Sarah Palin in an interview. There seems to be pressure to not diagnose active duty personnel while active duty, and it isn’t just PTSD. This service member might have received treatment for months leading up to hir review board only to have hir diagnosis revoked for the board so that the military could discharge hir with a lower rating.
It’s not too hard to understand why this happens. The rating system breaks down a little like this:
A medical team of medical officers somewhere in Officer Land and look at your whole military medical record, and all these nifty letters written by the doctors who have seen you, along with some reports from your Chain of Command (CoC). Based on all of this information they determine whether or not to separate you from the military. They also give you a percentage rating of how disabled they think you are before discharging your from the military (there is also something called Permanent Limited Duty, which I can talk about sometime in another post). It goes 0%-100% (the percentage is ultimately the amount of money they give you and “how disabled” they think you are). Unless they give you at least a 10% rating you get nothing. There is a list somewhere of what constitutes what percentages, and the military’s is different from the VA’s and each branch seems to interpret it differently. Anything between 10 and 20% will grant you a one time award (I love that they use the word “award”, like somehow you have won a prize) based on your pay over the number of years you spent active duty (minus taxes, but including any bonuses you earned). Most medical review boards fall in this range. The magic number seems to be 30%, which gives you a monthly stipend based on the same numbers. This math works all the way up to 100%. After 80%, however, you receive what is called a Medical Retirement, which, regardless of how many years you have served, you retain your full benefits (insurance, commissary, exchange and medical) as if you had retired after 20 years of service. That, I think is the rub. It’s money.
When I had my review, it went a lot like that as well. I could have been Sgt. X (well, Petty Officer X) in the rheumatologist’s office w/ a tape recorder. The same guy who had written in my record that he was treating me for fibromyalgia had written in my medical review that there was no way to know for sure, that I could in fact have fibro, but that I could also have CFS, or PTSD, or just be really depressed, so there was no real answer. His best advice was for a medical discharge and a referral to the VA for follow up care. He also suddenly became angry because I didn’t want to be on Cymbalta, because I didn’t feel the need to be on another anti-depressant when ADs weren’t helping my pain (Lyrica wasn’t out yet, and Cymbalta was a new-ish treatment). When a doctor tells me “I guess you don’t want to get better”, without listening to my concerns I know I have lost a battle.
After my review board findings came back (10% if you are nosy), my doctors seemed to have a shift in my care. I was receiving less pain management care (well, less pharmaceutical) and the focus was more on mental health. My review board found that I was too depressed to continue with active duty service, oh, and Trichotillomania sounded weird, I guess, so they tossed that on there, even though no one gave a fuck about it before. Pretty much all of my care was to be managed through Mental Health (which, should be noted, is in no way a slam on mental health. In my case, it was not the treatment I needed, even though for some people it is what they need), which made my physical needs very difficult to acquire while I was still active duty. Yes, I was depressed, but I was depressed because I was in so much pain that I was having a hard time dealing with life and a child, and because no one was listening to me. I was not in pain because I was depressed. No one seemed to be interested in the sequence of events. Before my review board findings I had a PCM, a neurologist, a rheumatologist, a chiropractor, an internal specialist, and a pain management specialist all convinced that all signs point to fibromyalgia. Afterward you could have dropped a pin in room of crickets for the voices that came to my defense.
After my discharge I began the process of filing the VA claim. It is pretty much the exact same process, minus the stuff from the CoC. Oh, and it takes longer. Hmmm. I wonder why that is.
I firmly believe in my heart that military doctors (and doctors employed by the military) are being pressured to push us out the door and to let the VA sort us out because it is easier on the budget. The Armed Forces Committee seems content to thank soldiers by one-lining them out of the fiscal year’s planning, and it pisses me off. When I was given my board findings and told to sign off on it I was able to glance at the list of others who had been reviewed with my own. I remember seeing at least a dozen names with finding for PTSD or other things that are “invisible”, all with a 10% or lower finding. Brothers and sisters who have served their country, and this is the thanks we get when shit didn’t go as planned. I know that this is happening to many service members, military wide. I know that this is happening because our disabilities are invisible and easy to dismiss. Veterans are slipping through the cracks, and Congress and the DoD is not only letting it happen, but damn well encouraging it.
This is the first in what will hopefully be a series of posts on navigating disability in the military health care system.
Perhaps this is the wrong question. Instead, I propose: What is there to heal?
Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”
Take note of the words I have highlighted. What are they saying?
This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.
But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.
And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.
These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.
But why should they be made normal?
Why should any broken person be pushed and pressured into a form which does not fit?
Why is it that a person who is anything other than normal is therefore less than whole?
Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?
Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.
What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.
It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.
[This post was originally published on October 3, 2008 at Hoyden About Town.]
*trigger warnings apply to this post: descriptions of abuse and sexual assault against women with disabilities**
“This young woman [“Caroline”] has cerebral palsy, is wheelchair bound, totally dependent on carers for her personal and daily living activities, and non-verbal. Cognitively very aware, she depends on assisted communication to enable her to communicate … Caroline was sexually assaulted by the taxi driver who picked her up from home and drove her to school …
Caroline uses a communication book to communicate, but her communication book did not have the vocabulary she needed to describe what had happened to her. Her communication book did not include words such as “penis” or “rape”, and police would not allow these words to be added after the incident, because as the police explained, in court this would be seen as leading the witness. (Excerpt from an interview with a support worker cited in Federation of Community Legal Centres, 2006, pp. 7–8).”
Suellen Murray and Anastasia Powell of the Australian Centre for the Study of Sexual Assault have just released a new report: “Sexual assault and adults with a disability enabling recognition, disclosure and a just response” [PDF].
This report starts to fill a huge gap in our knowledge of sexual violence in Australia. Although data in North America has shown that women with disabilities (WWD) are far more likely to experience sexual violence than those without, up until now there has been little or no systematic research into what is happening with WWD in Australia:
Despite being the major national data collection regarding the status and experiences of adults with a disability, the ABS Survey of Disability, Ageing and Carers, does not invite participants to report on their experiences of violence or abuse.
Similarly, the ABS (2006) Personal Safety Survey report, which specifically investigates experiences of violence, does not identify the disability status of participants, and the International Violence Against Women Survey (IVAWS) specifically excluded women with an illness or disability from the sample for the survey (Mouzos & Makkai, 2004).
Therefore, despite evidence that approximately 20% of Australian women, and 6% of men, will experience sexual violence in their lifetime (ABS, 2006), there is no standard national data collection that includes the experiences of sexual violence amongst adults with a disability, or more specifically, the experiences of women with a disability.
There is one smallish South Australian study showing that adults with intellectual disabilities are over ten times more likely to have been sexually assaulted.
(Originally posted November 2008 at three rivers fog.)
I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.
My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.
But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.
Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.
God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”
I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.
This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.
And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.
Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.
That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”
It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.
Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.
But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.
Which means you don’t get stronger. You get weaker.
“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.
Say, all you sick people out there: does any of this sound familiar?
Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?
But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.
Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?
Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.
When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.
It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.
Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not