Tag Archives: disability

Dear Imprudence: Thank You for (Proving) Your Service!

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Slate Magazine’s Dear Prudie got one right this week, with a letter from a woman who’s husband is a U.S. military veteran, who recently lost his leg “due to a medical condition that was unrelated to his time in the military”. According to the letter writer, her husband has adjusted well to his recent amputation, however, it is the passers-by who seem to not be able to just let it go. She writes:

[O]ften strangers will pause to talk to him while we are in public, and these well-meaning individuals will ask whether he is a veteran. When my husband answers yes, it is inevitably assumed that he was injured in Iraq, and he is often thanked for his sacrifice for our country. One elderly gentleman hugged him with tears in his eyes! While my husband is a veteran and technically qualifies for the warm gesture, it seems deceitful to allow these people to believe he suffered a grave injury in Iraq. We don’t want to share my husband’s complicated medical history with strangers, but we don’t want to discourage people from giving thanks to vets in the future. What should we do?

Prudie’s response is pretty solid, in my opinion here. People with disabilities face nosy questions all the time. Everyone from children who can’t help but be unabashedly honest to grown-ups of the well-intentioned and otherwise variety. People with visible disabilities are constantly questioned about the whats, the hows and the whys of their conditions, as if they are under some obligation to share private pieces of their personal medical information. PWDs with invisible conditions are scrutinized by even their close friends when their health varies from day to day.

Veterans also face a barrage of these questions even when they are able-bodied, from people wanting to know about their service, where they’ve been, even if they have killed someone (hint: you should NEVER ask a veteran this question). Sometimes this line of questioning ends in tears and hugs and thank yous because people are grateful and some even want to share common experiences. Sometimes this creates tense situations. One place where I was stationed in California this actually resulted in people throwing their drinks on sailors and calling us “baby killers”, resulting in a lockdown on how and when we were allowed to leave the base or our houses.

The place where this intersects creates a wholly unique situation. Like Prudie says, people see a person of about the right age with a disability and presume that this person must be a combat-wounded veteran. Cue the questions and thank-yous, and demands for, once again, medical information that is none of their business. All based on presumption.

I agree with Prudie here. “Didn’t” and her husband are under no obligation to correct these people, no matter how well intentioned they may be in their demands for information or genuine their appreciation of his service. It is an invasion of his privacy, of their privacy, and it should be enough to appreciate the sacrifice that they made as a family (however much of that time was spent together) and he himself for his time spent in service, because it is a sacrifice of time and life. If these strangers want to assume that his loss of leg is related, then that is on them, but there is no litmus test of injury or illness that is required in order for your service to be appreciated.

Being patient and understanding that some of these people mean well is one thing, and it reflects well on Didn’t and her husband if they are willing to do so, and thank them for their gratitude. But when it goes beyond a thanks and violates their comfort levels they should feel no guilt over drawing a line and letting them know that they would rather not discuss it.

Fighting To Get Back And Other Cute Metaphors

life changes, military, oyd rants, , , , , ,

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?

bodies, introspective, life changes, military, , , , , , , , , ,

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

Grey’s Anatomy Ableism: “How Insensitive”

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Spoilers for Grey’s Anatomy, up and including to episode 6×21, How Insensitive.

Grey’s Anatomy, a sudsy USAn medical drama based around a Seattle surgical team, is one of those showers which I can love or hate. On the one hand, they have a cast of fabulous and complicated women – Miranda Bailey! Cristina Yang! Callie Torres! Arizona Robbins! It not only passes the Bechdel test in every episode, but the people of colour Bechdelesque test in most episodes – and, which is considerably more rare on popular television, the women of colour variant.

Disability, however, it’s not so good on. There’s a main character (Owen Hunt) with PTSD who is portrayed in fairly interesting and complex ways (though he’s a white man whose PTSD was acquired entirely “conventionally”, in battle), but as a show which is focused on experimental and heroic cures of ‘broken’ folk, there are also major issues. And the fat hate. Oh my, the fat hate.

The most recent episode swung wildly from a scene I absolutely loved, to a scene that was so full of ableism that I was barely able to get through it. So I thought I’d share.

Background: a disabled, very fat man, Bobby Corso, has been brought in to hospital with abdominal pain for investigation. Bailey has attempted to offer “sensitivity” training to the residents, who are pretty much failing across the board. The residents are sitting eating lunch together; the woman who comes in is Mrs Corso (do we even learn her first name?), who is pregnant.

Transcript:

Yang: Let’s say [picks up a skinny chip] this is the wife.

Meredith Grey (looking horrified): No! Don’t do that.

Yang: And this… is him! [picks up large hamburger, bursts out laughing]

Karev: So I won’t be eating that now.

Yang: She’s gotta be on top.

[Lexie Grey smiles.]

Karev: She’s gonna get altitude sickness. [bursts out laughing]

[Mrs Corso, a slim blonde white women, is walking past. She stops and looks at the gang.]

Lexie Grey: [notices, suddenly looks serious] Guys.

Yang [looks at Mrs Corso]: Uh. Sorry.

Mrs Corso: It’s alright. I get it. [approaches table] You’re trying to figure out how my husband and I managed to get a baby in here. [Gestures to abdomen, smiles.] There are some logistics involved. Do you want me to tell you?

[Lexie and Meredith look abashed.]

Mrs Corso: [still smiling] But first! How about you tell me how you like to do it with your husband? Or your girlfriend? Any favourite positions? Or kinks! [wide smile] Let’s talk about that! Because I know you all must have a freakshow of your own goin’ on! Who wants to go first?

[Yang and Karev look abashed.]

Mrs Corso: No. Nobody? OK. [more serious] Well it’s probably none of my damn business anyway. [long look. Walks away. All the residents look abashed.]

[Cut to Bobby Corso lying in a hospital bed. Ex-chief surgeon Dr Richard Webber is standing with Mirand Bailey by his bedside.]

Webber: The fat under your skin has become necrotic. Has – has died. And the infection is eating through your skin.

Corso: Huh [wry semi-laugh]. I suppose it had to come to that. I’ve eaten everything else.

Webber: The operation is extremely risky. You have a higher than normal chance that a surgical complication could kill you.

[Karev enters the room.]

Corso: If I don’t have the surgery – I die? [Webber and Bailey look serious.] How long will I have, do you think?

Webber: Mr Corso, you want the surgery. You want to try –

Corso: I’ve tried. Everything. High protein, low carbs, drugs, pills, hypnosis. I’ve tried everything.

Bailey: You have a baby on the way. Think about that.

Corso: Who do you think I’m thinking about? You dream of having a kid. [sentimental piano/strings music starts up in the background] You picture yourself playing ball with him. You picture her standing on your feet while you dance around with her, you know? You don’t picture them bringing you food and [disgusted look] cleaning you up. I can’t walk four steps to go to the bathroom. You tell me – who deserves that guy as a father?

[Bailey and Webber look at each other, as if to say, ‘He has a point.’]

Corso: I just wanna be gone before the kid has a chance to know who I am. Don’t – tell my wife about this, ok? Just tell her it’s too risky. Let me go home.

[Mrs Corso enters.]

Bobby Corso: Hey, peanut.

Mrs Corso: What’s going on?

This video clip starts off great. Someone is finally speaking up and telling this rude, obnoxious residents exactly what is and isn’t their business when it comes to their patients’ behaviour and bodies. She’s rocking my world!

But then, it all comes crashing down, with the treatment of Bobby Corso’s disability. I felt like his little speech reflected the ideas of the writers: If you can’t walk and dance, if you can’t independently wash your own body, no child ‘deserves’ you as a parent, and you don’t deserve to be a parent. Especially when your disability is, in society’s fucked-up opinion, your own damn fault. It’s only sensible to think that you’d be better off dead, that your children would be better off never knowing you. The tragedy is not your acute infection and your possible impending death, but your very existence. Doctors understand this, though they may go through the motions of challenging it (in paternalistic ways that include telling you what you ‘want’).

There’s a further rage-inducing scene where Mrs Corso scolds Karev, saying “You don’t know that inside all that is the same man I’ve always known”. I think the writers are making it clear, again, that like so many people in our culture, they don’t see fat people and disabled people as full humans at all. They want to believe that there’s a “real person inside”, meaning a thin abled person; while the actual person, the actual body, is a facade that can be dismissed and pushed aside in disgust. Disabled bodies are not real. Not authentic. They don’t really count, and we’d rather not think about them. The only way some people can value PWD as humans beings is to pretend that “beneath” their disability, there is some other person that doesn’t make the person with the abled gaze feel uncomfortable. With this cognitive sleight-of-hand, abled folk get to pretend that they’re oh-so-terribly accepting and magnanimous, while lovingly maintaining the care and feeding of their disgust and hatred of the disabled body.

Later in the show Karev abandons his sensitivity training and yells at Corso, calling him selfish for planning to “leave a 700-pound mess for your wife to clean up”. Corso has surgery and survives the operation, in which he is serendipitously found to have a perforated diverticular abscess on his bowel; his presenting abdominal pain had been misdiagnosed as being due to his subcutaneous infection. He pledges, with the badgering of his doctors, to diet. The take-home message? The only way someone who can’t walk or clean themselves could reasonably be a parent is if they go to strenuous efforts to cure themselves, and succeed, first.

An aside-ish sort of a question: Can anyone think of any TV shows or movies (or books, if you like) which pass a disability Bechdelesque test?

1. It has to have at least two people with disabilities in it
2. Who talk to each other
3. About something besides an abled person.

Or please feel free to discuss the clip and the issues raised in it.

Slam after slam for people with disabilities in Australia’s new Budget

politics, , , , , , , , , , , , , , , , , , , , , , , , , , ,

The Australian Federal Budget is out, and it’s being feted in the media as a sober, sensible fiscally reasonable budget in which there are no really big winners or losers. “No frills, no thrills, no spills”, says the ABC.

Except for people with disabilities. What has received a little bit of coverage is the fact that there is no improvement in funding for public mental health, despite lots of rhetoric in that direction from Rudd and his cronies. There is apparently nothing toward practical improvement for Indigenous health, and $380M in cuts for disability pensions.

$380M in cuts for disability pensions.

Applicants for the Centrelink disability pension who are considered “borderline” will be routinely denied, put onto Newstart (unemployment payment), compelled to stand in line every fortnight and job-search on an ongoing basis, and sent to “up to 18 months” of mandatory job training.

Let me guess – “borderline” means “the probably currently-nondisabled official making the assessment will decide that they can’t see the disability concerned”. I expect this to disproportionately affect people with mental health issues, fatigue based disabilities, autoimmune problems, chronic pain, and so forth.

And let me guess again: if PWD are too sick to get to their training courses but can’t “prove” that to some random douchebag’s satisfaction, they’ll get breached (decreed as being in breach of Centrelink requirements) and, in the absence of substantial family support and the ability to organise themselves through a litany of appeals and assessments, end up on the streets.

This combination of further increases in the already huge pension obstacles for people with “less clear” disabilities, along with no improvements in mental health and Indigenous health programmes, is, in my opinon, a recipe for a huge increase in homelessness.

But Treasurer Wayne Swan is spinning this as being for PWD’s own good.

The Sydney Morning Herald explains further:

New applicants will first undergo a ”job capacity assessment”, as they have always done. But the government is reviewing the impairment tables to make it a tougher assessment and harder to get to first base. After that unless people are manifestly incapable of any paid work, or clearly incapable of working even 15 hours a week, they will be put on the Newstart Allowance. Then they will be sent on a training course, either with a special disability employment agency or a regular one. The training is meant to increase the numbers who can work at least 15 hours a week, thus disqualifying them from the pension.

Efforts to curb the growth in the numbers going on the pension would be admirable, given people mostly stay on the pension for life. But the move is not admirable in the absence of an increase in the level of Newstart Allowance, or a loosening of its income test, which exacts harsh punishment on those who get a little work.

On the disability pension a single person can live a frugal life on $350 a week. On Newstart a single person is plunged into poverty on $231 a week. How many of the 25,407 people who might once have qualified for a disability pension will end up, not in work, but unemployed and in poverty?

The comments at the Herald, enragingly but unsurprisingly, are full of people flailing around about how people on disability pensions are big bludging fakey fakers.

Another slam for taxpaying people with disabilities is the change in the tax offset for medical expenses. There will be a big jump in the offset threshold and indexing after that, expected to take away from PWD almost much again as the funding cuts for disability pensions.

Lastly, the Pharmaceutical Benefits Scheme, Australia’s mostly very good pharmaceutical subsidy and safety net programme, will be “reformed” to the tune of $2 billion in government savings – but we’re not told how.

In other news, there are huge boosts in funding for elite sports and for ‘border security’. So crips will be paying for Olympians and for the harassment and prolonged detention of immigrants – while many can’t afford wheelchairs, homes, or medication.

This budget, just to make my disgust even more perfectly clear, is coming from a nominally LABOR government.

On twitter I summed the budget up thus:

@ilauredhel Aust’s priorities: $237 M boost for elite sport; $1.2 B boost for ‘border security’; $380M CUT for disability pensions #budget

I’m still gaping. At the budget itself, and at the nodding, satisfied happiness of most of the political media at there being supposedly “no big losers”.

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

accessibility, invisibility, small stories, social attitudes, work, , , , , , , , , , , , , , , , , , , , , , ,

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010) →

Recognition

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Y’all may know I’m mentally ill. I have mentioned a time or eighteen. It’s a thing I do, talking about my experiences with mental illness and mental health care, trying to provide an anecdote to do with the data.

What I talk about somewhat less is having cognitive variations and learning disabilities. Which I do. Most of my life I thought I didn’t. I was never evaluated for learning disabilities; I got good marks in school (some of the time). I was not evaluated for autism spectrum disorders. When I was a child ASD wasn’t a diagnosis at all. There was just autism and the perception of it was really scary: autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions. Autism definitely didn’t mean anyone like me. (Even though I did have repetitive motion behaviours — my relatives talk about it a lot as a cute baby story.) When autism spectrum disorders did become diagnoses in the U.S. I was an adult and adults are rarely evaluated for autism. Or cognitive variations. Or learning disabilities. They’re childhood things aren’t they? (Don’t those kids grow into adults?)[1. On my Big-Ass List of Shit What Needs Doing is finding someone who can do that evaluation and see about official diagnosis; if nothing else it would help to have to throw at the Social Security Administration for disability stuff. But some people who have known me a long time and are not unfamiliar with autism traits have said that autism is not inconsistent with my history and my behaviour. Even if they don’t feel qualified to make a full-out diagnosis. They include my wife — who is admittedly not all that objective but it is kind of her field (one of her Master’s degrees is in psychology) — and my general practitioner (who reads up on things her patients ask about when she doesn’t know) and the therapist I’ve seen, off and on, since before I met my wife. What with there being rather a lot of spite for people who are ‘self-diagnosed’ I usually write about the traits directly and avoid the diagnostic label. But I’m reasonably confident I am actually autistic. The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn. But I have seen hatboxen in fora like F•rk write hatboxish shit and follow it up with “i cant help it i got teh assburgers hur hur” which is yeah appalling behaviour.]

It is real damn frustrating. It’s hard to start anything and harder to finish what I do start. I would love to be organised but I can’t; when I have to put something in my hands down I have to put it down now and that means wherever I’m at and not wherever that thing lives. Sometimes digits transpose when I am reading or keying or writing them and sometimes the words I read are not the words on the page but I learned a long time ago to compensate well enough no one knew. I compensated well enough I forgot I had this thing that might be dyslexia until I started paying attention to what my perceptions and thoughts were doing. I have a lot of trouble communicating in person using my voice — I don’t process speech well and I don’t speak well.

And sometimes I am just not good at thinking. (Lately this has been a lot of the time.) It’s hard to even complain about having trouble thinking to my wife. She perceives it as Moira Is Being All Negative About Herself Again and she interrupts me with “You’re not stupid. You’re one of the smartest people I know” and I’m all faaaaaaack what’s the point? and I just shut up again. I’ve had this conversation and it doesn’t go anywhere nice.

Thing is I’m not saying “I feel stupid and I don’t like myself for it.” Okay there’s some of that I wouldn’t be me without some of that but it’s more frustration at not being able to do shit what is needful. I am trying to say I feel stupid and I need help doing shit. Please. Being smart does not help me. Being able to rattle on about how cool quantum mechanics was when I finally managed to lose the distortions dualism imposes on quantum-scale stuffs and wrap my head around monist models of quantum-scale mechanics is not a useful skill in daily living. In fact being perceived as highly intelligent whilst actually having cognitive impairments has been an enormous pain in the ass. People assume because I can understand quantum mechanics and high-order differential equations (and possibly most important because I have a talent for writing) I am globally smart and can apply that intelligence to any problem needing solving. Which I can’t. But I have trouble getting help because I’m smart.

It’s more than just “Gosh Moira you should be able to do these things.” It’s also “Gosh Moira you are so smart you can’t possibly have cognitive impairments.” And people feel taken advantage of when they do help. They’ll see me do something fucking ludicrous nerdy like building a reference document for my tabletop role-playing-game using endnotes and a bibliography in compliance with The Chicago Manual of Style. I can’t blame anyone for wondering why — if I can do that — I can’t do something that. Y’know. Pays? There’s a Voice in my head saying the same thing all day every day. (Most of the time it looks like I’m working on the nerd project I actually spend not working on it. It’s just since no one’s paying me to do the nerd project no one cares if I’m reading manga instead of working.)

Only rarely do I get any farther than “I feel stupid” before I get cut off. It’s exhausting, trying to get the rest of this said and heard, so that’s usually where it stops. In text — in a blog post — I can say it all at once. Nobody has to read it all, but I can say it. There’s maybe a better chance for communication this way.

Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You

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Percy Jackson, a pale young man in a grey t-shirt and jacket holds a lightening bolt in his hands in a New York City Background.Every now and then a movie comes out and I get super excited about it because it sparks something form my childhood or youth that I love.

Percy Jackson and the Olympians did that. I loved Greek mythology in High School (even if I went a little cross-eyed reading The Odyssey and The Illiad). Hollywood is trying to make mythology cool again, and I was stoked about that.

I so wanted to see this movie…and because I think I live under a rock sometimes, I hadn’t heard it was a book series *scribbles a wish list*.

And then we went to the theater.

***Spoilers Ahead. Turn Back Now!***

Last Chance to Avoid Spoilers! Continue reading Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You →

An OYD Airline Rant

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I won’t apologize for her actions and I’m not sorry for what happened to you. It’s not in our contract to assist passengers with their luggage and we reserve the right to refuse assistance to anyone. If that’s what you need, then perhaps in the future, you should make other travel arrangements.

Well, to say the least, that is not the kind of response I expect to get from a customer service representative; not the Entry Level Line Memorizing Oh Dammit Did You Really Ask For A Supervisor people, and I certainly don’t expect it from a supervisor. Were I to get such a resonse I would certainly suspect that something slightly sinister was going on here at said establishment where I was complaining. After all, if I am speaking to a Customer Service Supervisor, things have reached a fairly epic proportion of shit deep inconvenience, because I pretty much go out of my anxiety issue way to avoid having conversations with people I don’t know in person (let alone on the phone). Because I have to weigh the cost of spoons spent on holding myself together long enough to get out the details of what happened, as I did recently with my complaint to Patient Admin about Nurse Midwife V, versus the benefit of getting shit cleared up so it doesn’t happen again to other people who may follow after me and patronize a company, needing services, like in this case, travel.

But here, this is exactly the case. Here, evilpuppy from Incoherent Ramblings From a Coffee Addict, who, expending great energy, spoons, and emotional well being tried to file a complaint on the completely despicable treatment doled out by the staff at United Airlines, and received this condescending and otherwise completely, well, jack-assed and ignorant response from someone who should have a working knowledge of how an employee on an airplane should treat a person with a disability. Not in an email response or even in a letter form; this response was delivered face to face. All of this after she already went to the trouble of pre-arranging accommodations for a wheelchair and made sure to note with the ticket agents — multiple times — that she would need assistance on the plane.

Just a small dose of what evilpuppy endured:

The wheelchair left me off at the door and after making sure I had all of my belongings, he turned around and left. I boarded the plane and made my way back to my aisle seat where I set down my special seat cushion and lumbar brace before looking around for a flight attendant to help me put my luggage in the overhead compartment. The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.” When I asked what would happen if no one would, her response to me was: “Well, normally a passenger is around to overhear something like this and they’ll offer to help with it on their own. You’ll just have to ask someone when they get back here.” Then she turned back around and went up to the front seats where she waited to “assist” other passengers.

I was completely flabbergasted, but with no other option, I sat down to wait and pulled my carry-on suitcase as close as I could to try to get it out of the way of the aisle. As I’m sure you’re aware, however, your aisles are considerably narrow and even my best efforts left half of even my small carry-on suitcase in the aisle. What’s more, rather than help me, most of the passengers simply knocked into my suitcase and shoved past me on the way to their own seats. Every time they hit the suitcase, it in turn hit me and jarred my back more and more with each strike. The plane wasn’t even half boarded and it already felt like the pain medication I’d taken less than a half hour prior to entering the airport had worn off as though I hadn’t taken it at all.

Now, I have endured some pretty meh-hessed treatment at the hands of customer service personnel. I have seen other people treated pretty horribly. I have had my disability status questioned, rejected, laughed off. I have had it compared to the fatigue of being a stay at home mother of two children (I am not downplaying the work of SAHMs, having once been one myself, but these are apples and well NOT APPLES!), and of course DIET AND EXERCISE! but never have I had someone so flatly refuse to acknowledge that 1) their co-worker/staff/employee so royally screwed up and 2) that their co-worker/staff/employee’s royal screw up really fucked my world up and over in a way that might just have rendered my next few days useless, since that might mean that I will then be spending the next two or three or more days in bed or on a couch with my feet up trying to recover from the aforementioned loss of spoons and emotional well being.

To put it concisely: Wow. That is messed up.

Not to mention, I am not sure I have ever patronized any business where it was standard procedure for other paying customers to assist a person in lieu of the paid employees who are standing around. It just seems lately that airlines are giving me more and more reasons to not give them more money than I can afford to basically be treated like crap.

I have never been told that it wasn’t the job of the person whose actual job it was to help me.

OOPS! UNITED STEWARDESSES! ITS LIKE TOTES YOUR JOB!

Once passengers are onboard the aircraft, our flight attendants can help with stowing and retrieving carry-on items, as well as providing wheelchair assistance to move passengers to and from the aircraft lavatory (although they cannot provide assistance inside the lavatory). Flight attendants may also provide assistance with taking oral medication, identifying food items on meal trays and opening packages.

Is there a single airline that isn’t treating humans like chattel these days? That isn’t outright pissing me off for one reason or another (well, Korean Air hasn’t yet, but I haven’t flown International since the Christmas debacle). I am beginning to think I will need to take a boat to get home the next time. And Space A military flights are a privilege I am willing flex more and more if I have the time and pain medication available. It might be worth it to not be herded on and off a plane like cattle, denied bathroom and water privileges for hours on end (which can be living hell to a PWD).

Oh, and also:

Then the flight is delayed. We sit on the runway for some time, and because of the new federal law requiring that airlines not keep people on the tarmac for more than 3 hours, they let us off for about 5 minutes before insisting we all get back on because we are leaving right now. We do not leave right now, or for several more hours. They let us off the plane again. Shortly thereafter, they insist that we all get back on the plane because we are leaving right now. We do not leave right now.

At some point after the second or third round of boarding and being told to sit down because we are leaving right now, a man towards the back of the plane stands up to get himself a cup of water. For context, this flight is (or was supposed to be) a 7:40 a.m. flight from Atlanta to New York, landing around 9 a.m. It is full of (mostly white) business people in suits. This man is brown, and appears to be South Asian. A flight attendant at the front of the plane, near where I’m sitting, sees him stand up and panics. She throws open the airplane door and starts yelling at him that he isn’t allowed to stand up, and that he needs to exit the plane immediately. The man is confused, and says, “What? I was only standing up to get a cup of water.” She yells out, “I don’t care, you’re off the flight! Get your things, you’re off the flight!” Water Man starts arguing with her about how he just wanted a glass of water, and he is happy to sit down now, but he’s not getting off the flight. The flight attendant says that she feels threatened and gets a supervisor, who in turn gets airport security, who in turn tell the man that he is going to be arrested and charged with a felony if he does not exit the aircraft. The man, probably smartly, exits the aircraft.

Like Jill passes over in her rant here, with all the hype of racial profiling being trendy, if you assert your right to a simple thing like a drink of fucking water while daring to be brown you can be thrown off of a flight.

Thankfully The Consumerist has picked up on this (although “who says she’s disabled”? Could we pour more salt on this?). I am not entirely sure how much good this does things like this, except that I give them all kinds of link love on Facebook when I find something relevant, so maybe this went viral? I would however, like to point out that the comments at The Consumerist are some of the worst disability blaming shite I have seen in a while (and it shows how safe my social justice bubble is). It seems that we, the PWDs, should not dare to carry on a bag if we a) need a wheelchair to get on a plane b) can’t lift it ourselves and c) have the audacity to want to be treated JUST LIKE EVERYONE ELSE ON A PLANE. Also, don’t forget, if you take pain medication, and/or dare to have a drink on the plane to settle your anxiety you are not to be believed when you make claims as to the crappy ass treatment you received. Nope.

Because there is no way in the entirety of the multiverse that you would ever remember something as abusive or as hurtful or as downright dehumanizing as what Dina the Customer Service Supervisor at SFO said to you, for the rest of your life, or how it made you feel at that moment in dog damned time. Evah.

PWDs are not human. We are not people who should be existing in the same world with those good, hard working, abled-bodied people who can do everything themselves. To hell with us, for not being able to lift our bags! Forget that we just maybe had to scrape together all the money we had to afford the damned flight in the first place so that extra twenty five dollars is NO BIG DEAL JUST CHECK YOUR DAMNED BAG YOU LAZY STONED JERKS!

Silly me for expecting human treatment for all humans.

Via commenter Livre at The Consumerist, United is apparently attempting to contact (or has, I am looking into it) in true “Oh Snap Kevin Smith Has One Million Twitter Followers DOOOOOO SOOOOOMETHING” fashion to try and do damage control sort this out.

Sort this out? That would be something, now, wouldn’t it?

h/t to my friend Kate on Facebook