Tag Archives: invisible disabilities

Recommended Reading for Wednesday, November 24, 2010

Hello Wednesday my old friend. Why I can’t remember that it’s Wednesday until late in the day (at least in my time zone), I will never know.

I was going to link an article about a showcase of artwork by Deaf and Hard-of-Hearing artists, and then when I re-read the article realised the only artist the article highlighted was a person who is neither d/Deaf nor hard of hearing, but wanted to show art in support of the project. I find that a really…. interesting…. way of framing a show that’s supposed to be about highlighting the work of artists with disabilities.

Instead, I’ll point your attention towards a presentation that Deaf photographer Stacy Lawrence gave to the Rochester School for the Deaf.

Katie at Muni Diaries: My Disability on Muni

I get on the train in the Sunset/Parkside district and ride it all the way in. My disability is largely invisible unless I’m barefoot or wearing a skirt that exposes my scar-covered right leg. I get dirty looks from older riders when I don’t get up to allow them a seat; I look like a perfectly healthy 22-year-old woman. I sit in the seat, repeat to myself “you’re handicapped and have a right to sit here” and stare at my foot-and-a-half while clutching my cane with white knuckles.

Jail no place for FASD offenders, ministers told

Citizens with FASD make up only 1% of the Canadian population but account for an estimated 40% to 50% of all prisoners. People born with FASD have difficulty learning new behaviours and controlling behavioural impulses.

Theatre Blog: How captions stopped plays being seen and not heard

Captioning is offered on a regular basis by major subsidised and commercial theatres all over the country. You’ll see “CAP” or “STAGETEXT” in the flyers. Stagetext is the name of a charity that made captioning happen big time. Over the past 10 years they have delivered captioned shows, and trained theatres in how to provide captioning in-house. Captioning has meant a big growth in deaf or hard of hearing theatregoers, for whom theatre is accessible like never before. Stagetext also offers deaf and access awareness training to theatre staff, including front of house staff, to help make a theatre visit more enjoyable and less stressful for deaf people. Clear communication and a friendly face work wonders. It’s great to see deaf and hard of hearing people talking passionately about shows with family and friends, and even daring to say what utter rubbish they’ve just seen.

Minister Responsible for Disability has Inaccessible Office Diane Finley, you are driving me up the wall.

Yes she piloted the Registered Disabilities Saving Plan through Parliament. That helps the children of upper-middle class Canadians save for the time when the parents have passed on. Those lucky few children with disabilities, then adults, face the bleak future of struggling to exist in Canada’s disability wasteland. The program is useless for most Canadians with disabilities who are struggling to survive. Where are they going to find disposable income to save for their childrens’ income?

Canadians with disabilities who can no longer work are subject to the worst conditions of poverty of any group. They form the largest number of people in Canada on social assistance.

The only Federal income program that helps them is the Canada Pension Disability which maxes out at $13,000 annually. Most Canadians on disabilities and CPP are receiving less than $10,000 a year. It doesn’t take an economist to understand survival on $10,000 is punishing poverty.

[Don has a RDSP. Don is also the child of upper-middle class parents. It’s also really really firmly designed with parents of children with disabilities in mind, much like the Registered Education Savings Plans. For example, our bank refused to allow Don to manage his RDSP over the phone, through ebanking, or anything else except in person. The bank building is only “wheelchair accessible” in certain areas, which doesn’t include the areas you need enter in order to manage your RDSP in person. Other banks have different policies, of course, but there’s nothing quite like being told an investment is “for you” when you can’t even get into the building to manage it.]

Mariness: Body scanners and pat downs

With the body scanner, however, you have to be able to stand still. Since I can’t do this without at the very least wobbling and swaying, I now have to do the patdown in my wheelchair.

Smackie the Frog:My TSA Experience

This got me to thinking, though. Am I going to always be subjected to the “enhanced pat down” because of my medical device? I don’t even so much object to the backscatter x-ray machines, and I don’t have any problem with them doing the swab on the device. So I did some research and talked to other people with the insulin pumps who have also flown, and they have had to deal with the same thing I did. One lady was even told by a TSA supervisor that if you have a medical device like an insulin pump, you have to go through the “enhanced pat down”. No choice.

American Coalition of Amputees: ACA calls for Improved Screening Procedures for TSA

“I had just been put in the Plexiglas screening booth,” said Peggy. “My 4-year-old son was made to sit across from me, crying because they would not let him touch me. Everyone was looking at us. Then the TSA agent asked for my prosthetic leg. I knew they could wand my leg, but he insisted on taking it from me. And if that wasn’t humiliating enough, he asked for the liner sock that covers my residual limb, saying I had to give it to him. I felt pressured to give him my liner even though it is critical to keep it sanitary. I was embarrassed to have my residual limb exposed in public.”

There have been several news stories about how the changes in the TSA in the US have affected passengers with disabilities. Here is only a sample, I assure you:

Bladder Cancer Survivor Recounts Humiliating TSA Screening See Also: TSA pat-down leaves traveler covered in urine

Teen says TSA Screener opened sterile equipment, put life in danger

TSA makes Cancer Victim Remove Prosthetic Breast

Recommended Reading for 12 November, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.

There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?

The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.

Frank Russo helps make music for the deaf.

Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.

The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.

Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.

As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!

…and I’m feeling good

This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.

I love mine.

Who Gets to Speak?

I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Recommended Reading for 19 July 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Hope Is Real: Fibromyalgia Is Not Caused By Men

I remember the invite said that the speaker thinks women have fibromyalgia, because of the stress of men not providing enough for women. This statement offends me to the core and it is just another example of patriarchial bullshit. It is not that I do not think we need each other, we do. People need people in order to survive, but I do not believe that there is one group of people who needs to care for womyn more than another. There are all kinds of communities of people who care for each other. What I take the most offense is it is the language of domination. It is not men who need to take care of womyn, but rather it is people that need to take care of people. I am not interested in someone solely taking care of me, but in being in a relationship where people take care of each other. I am interested in reciprocity

CTV News: Counsellors cite Afghan war for military domestic abuse [trigger warning for descriptions of violence]

“Our anecdotal evidence is that there is an increase in the amount of domestic violence, and in the amount of children who are seeing violence in the home.”

Many military members are now shouldering the residual stress of two, three or four tours in Afghanistan or more, Lubimiv said.

“When a soldier returns home, many have talked about feeling like strangers, not knowing where they fit. And it takes time to close that particular gap. And if there are, on top of that, mental health issues — or if there is already an issue of conflict or discontent in the couple’s relationship — then all of that gets magnified by the new experiences that they each have faced.”

Most troops will work through their issues on their own and gradually reintegrate, Lubimiv said. “But many don’t respond in that way, need additional help or haven’t been identified.”

Wisconsin State Journal: Vets cheer change on PTSD claim

The rule change will have its greatest effect on Iraq and Afghanistan veterans because so many non-combat personnel encounter roadside bombs, and because there are few places not in danger of mortar attacks or suicide bombs.

Even Wisconsin National Guard troops performing administrative jobs in Baghdad’s Green Zone were within range of mortar rounds that insurgents occasionally lobbed in blindly, said Bob Evans, the state Guard’s director of psychological health.

Most of the 3,200 members of the state Guard who had duties as prison guards or support personnel in Iraq last year underwent stress that could lead to PTSD, Evans said.

“I’ve seen people who weren’t even close to the battlefield who came down with PTSD and anxiety disorders,” Evans said.

Anishinaabekwe: We Are a Generation of Healers

We are a generation of healers because we can choose to turn the intergenerational trauma to intergenerational healing. We can start with ourselves and our families. I have been really blessed to have a family that is open and committed to healing. I know many people who have had to completely cut themselves off from their family and do healing on their own. In my healing work I have been able to reflect the inner work I have done on my family. In turn, each individual in my family can reflect the healing that they have done onto each other. I have worked in the Native community and will continue to do so. I can reflect and send the healing I have experienced in myself and in my family into the community. Healing happens in a circle.

Deeply Problematic: Wendy Garland dies after abuse and neglect from family

The death of Wendy Garland is horrific. Her abuse went unnoticed, unchecked because of ableism: societal devaluation of people with disabilities and misplaced trust in abled family members. Garland’s death is a direct result of abuse on the part of her caregivers, the people in her life that some want to canonize and position as her selfless saviors. Parents, partners, siblings and other folks taking care of persons with disabilities can be wonderful, but they are not necessarily helpful: they can hinder, they can neglect, they can abuse, they can hurt, they can kill.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com

I Bet It’s Exactly Like That!

[Trigger Warning for descriptions of violent thoughts of self harm]

Oh, by now, faithful readers, you know where we are about to go. We are about to go on a little journey into my mind, the scary place that it is, where I open the floor to discussion about the ways that, once again! Stars and Stripes has managed to get so much so wrong. Because tonight, gentle readers, as I clutch the place that might be close to where my duodendum is and sip my Korean Red Ginsing tea, which the lady at the market told me might help my indigestion, I am reminded once again that I am my mental health are nothing but a metaphor to be co-opted at someone’s convenience!

Let me give you a little background here, because the only online version I can scrape up is this e-version of the print edition, and while WAVE found no accessibility issues with it, I am not going to guarantee that it will be accessible to everyone or accommodating of everyone’s needs. It is, however, a way around their habit of not putting all of their content in their online version (and also allows deployed troops to access the daily paper as well). The front page has the story’s picture, of a white male soldier in Army Green uniform: a light green collared shirt, black tie, green jacket with various awards and pins, a black belt, a black beret, holding a rifle with a bayonet affixed to it. The text on the photo says “Model soldiers [break] Every detail counts when you’re trying to join the storied Old Guard”. The actual article starts on page 4 if you are so inclined to read.

The Old Guard is a ceremonial guard that headquartered out of Fort Meyer, VA, and performs most of its duties in Arlington National Cemetary, similar to the Navy’s Ceremonial Guard, in that they perform many military funerals daily with the cleanest of precision. Their military bearing is expected to be above and beyond that of any other in their branch of service. Their uniforms are expected to be ridiculously perfect, with exquisite attention to the finest aspects of the details, not missing a single loose thread or even a speck of lint. A scuff on your shoe could set you back a week in training. They stand grueling hours at “attention” (The Navy’s Ceremonial Guard does this while holding the business end of the rifle and keeping the butt parallel to the ground for hours, I do not know about the Army’s Old Guard. Full disclosure: I once and briefly dated a guy from the Ceremonial Guard). Everything you know about military bearing is wrong when you arrive for duty, and it is re-taught to “look better”, including the way you turn, march, stand, dress, and press your uniforms (you are even issued special dress white uniforms that are made to withstand the repeated ironing in the Navy Ceremonial Guard).

Do you see what I did there?

I was able to give you some brief background on the very strict regulations of the Old Guard and the Ceremonial Guard without using ableist language. I didn’t once have to compare soldiers or sailors who are required to iron their uniforms exactly right, or who are trained to notice when their medals are one sixteenth of an inch off from the proper dress line to someone who actually obsesses over things like drinking bleach or shoving cork screws in her eyes. Or what it would feel like to jump from a fifth floor balcony.

Because these, my gentle readers, are actual obsessions. They actually intrude on your thoughts and disturb your life, and are really very upsetting, I can assure you. They make you do things, like pull out your hair, burn yourself with a curling iron, wash your hands again and again, and pick at the little imperfections on your skin. Yes sometimes you even iron your uniform again and again and again because you just can’t get it right and double creases are the End of The Universe as We Know It, but it might be because you are certain that if you stop then you are going to iron your hand, not because your Leading Petty Officer is going to chew you out (or your whole division, I mean, does the article expect me to believe that the entire Old Guard has Obsessive Compulsive Disorder? Because that is not on the application!) but maybe because you recently thought that you might do something very harmful to someone you loved if you stopped holding that iron very tightly. Even if your LPO has put the fear of Cthulhu in you.

Being part of an elite military unit who is honored to be charged with memorializing the fallen and handing flags to their loved ones* or escorting the President or guarding the Tomb of the Unknown Soldier is a pretty powerful thing, I am sure. The end result of the intense training, of the weeks and weeks of repeated inspections and physical demands, might very well leave some people with OC tendencies or maybe even OCD outright I suppose — I am not a doctor I don’t know and I don’t pretend to know every experience — but it isn’t the same as living with a condition that sometimes (OK, often) inhibits your day to day ability to live, interact, and (here’s the important one) do your job because you are busy carrying out compulsions to get the damned obsessions out of your head.

Yeah, getting worked up over a uniform inspection? I bet it’s exactly like that!

Only, I’ve been there and done that and bought the cheap t-shirt (hell, I’ve been the OC girl who has had to prepare for uniform inspections!).

It isn’t anything like that at all.

*I want to also point out that the article, for those of you who aren’t able/don’t want to read it via the e-reader the requirements for Old Guard: Must be 5’10 or taller, must have combat experience, blah blabbitty blah. Nothing like another exclusionary Old Boys Club for the military, so they can sit around and pat each other on the backs about how Awesome! they all are. I might note, out of some Branch Pride that the Navy Ceremonial Guard frequently wins the Joint Service competitions and they have *gasp* women in their guard.

Oh, and those people receiving flags? Always widows. Always. Way to erase anyone else who might be a surviving loved one of a fallen troop, there S&S, Army, and anyone else involve. UGH!

New VA Research Could Explain Lasting Effects of PTSD

Gentle readers! I come to you today with a delighted feeling that I do not believe is caused by the half life if a painkiller! Today I read an article in my paper version of Stars and Stripes that had to do with the intersection of disability and veterans and I was not instantly thrown into a bout of contemptuous paper shredding! I mean, really, I could make party favors and possibly go into business selling paper mache animals for children to beat with broom handles in hopes of gathering candy! But I am a slightly morbid person some days, especially when the painkillers aren’t working.

But in all seriousness, this article, about the long term effects of PTSD on the body, has some points which I will now discuss with you in a non-concise manner! Not the least of these details, relegated to two brief paragraphs, is the fact that the people at the VA are doing one study specifically aimed at women who served in the Vietnam War, acknowledging that while women did not serve in combat, that the war affected them in very real ways:

Women did not serve in combat during the Vietnam War but many experienced trauma while serving as nurses and care providers to the wounded returning from battlefield, Magruder said.

“No one has studied the mental health of these women,” she said. “Their experiences were certainly different than the men, but they had other experiences. Some of these women were the last people to hold the hand of an 18-year-old kid who was dying.”

Gee, their experiences were different from men, you say? No kidding? *ahem*

One of the biggest myths that I encounter, being the go-to girl on military matters in some social justice blogging circles is that combat veterans have the patent on PTSD, which is not only incorrect, but also erases the experiences of countless other people whose lives are destroyed by the ways that PTSD is still misunderstood. I’ll take two paragraphs if it means that the VA is finally getting around to accepting the idea that ladies might actually have what it takes to handle the VA being wrong (about ladies having PTSD, that is).

The VA is now trying to weasel out of the fact that they were ordered to look into this PTSD business a long time ago — a decade but who’s counting, amirite? — but decided to throw Congress the bird and a “Ah do what Ah WANT!” Eric Cartman impression. The National Vietnam Veterans Longitudinal Study, expected to help create new policies and effect changes for incoming veterans with PTSD by 2013 might have actually done some good for people who are already having trouble convincing doctors at the VA that their condition is real if the VA could have been arsed to get this show on the road back then. A decade ago they were one less war behind.

It’s nice that they are starting to get around to looking into things like the correlation between living with PTSD for years and developing other conditions. Things like cardiovascular disease, cancer, dementia, asthma and diabetes are common among Vietnam vets who have been living with PTSD for decades, and according to the article there are some who believe even the immune system is affected by years with PTSD. But you can’t help anyone when you aren’t doing the research to find out how.

As the VA is becoming sandwiched between claimants from war era veterans from major wars that have left physical and mental scars on so many, it is important that they get their act together and start doing what they were told to do a long damned time ago. Having the longitudinal data from Vietnam veterans will more than likely prove useful as more and more people come home from two fronts to their old lives and attempt to readjust, and it could lead to better services for more veterans from any war. I can’t say that I have a lot of faith in them to get it together. As Charles Trumpower, a disabled Marine who tours the country speaking to veterans about PTSD notes, not a lot has changed in the last 35 years.

Don’t get me wrong, I’m thrilled to see this research and this effort going underway, but wow, readers, should this have been done a long time ago. I can’t help but think of all the people that this could have helped.

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

Recommended Reading for May 18, 2010

Pharaoh Katt at Something More Than Sides: I Dreamed That I Was Normal

I dreamed the world made sense,
That people never tried
To delve into my psyche and redefine my mind.

Gauntlet at Tumblr: Janet Street-Porter shares her thoughts on depression…

I think maybe what we are seeing here, is women who have a powerful voice in the media through their personal fame or newspaper column, sharing their experience in a way that will hopefully help to normalise the experience of mental health problems and help reduce stigma.

telesilla: 3W4DW — Day ???

I don’t need to explain to anyone why I’m on government assistance, because you know what? It’s none of anyone’s damn business.

Brendan Borrell (Los Angeles Times): Pro/Con: Time to reexamine bipolar diagnosis in children?

In a draft of the next edition of the Diagnostic and Statistical Manual of Mental Disorders — the American Psychiatric Association’s bible — a new label, temper dysregulation disorder with dysphoria, is proposed for these behaviors instead. Unlike bipolar disorder, the new label doesn’t specify that the disorder is a lifelong condition.

An OYD Airline Rant

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

Veterans Find Self Expression and Therapy

Moderatrix’ Incredibly Verbose Note: The linked article in Stars & Stripes held a couple of problems for me. One: It gave an impression that pharmaceutical therapy is somehow not a reasonable treatment for people dealing with mental health or anxiety disorders. This should not be taken as the opinion of myself, nor any member of the FWD/Forward team. I believe that it shows how stigmatized that direction of therapy can be, and how mental health services can be socialized to make men feel “weak” for needing them. How a person chooses to treat their mental health or social anxiety disorders is between themselves and their health care provider. Comments judging this course of therapy will be deleted and the commenter possibly banned pending a review. I will not have someone coming to this board and seeing their choice of therapy, which is helping them, mocked or dismissed.

Two: The linked article says that bibliotherapy is “poetry therapy”, when nothing I have found is that specific. Anything that I have found online, as well as my background in Greek and Latin root words, says that bibliotherapy is any type of therapy using the written word as supplemental therapy. I found that statement by the S&S writer misleading. I am willing to be corrected, but I am more inclined to believe that it is a part of a broad spectrum of treatment options. I find it like saying that “pharmaceutical therapy” means keeping someone pumped full of morphine all the time (not that there is anything wrong with that if that is what you need to manage your specific needs).

Nonetheless, I found the article incredibly interesting, and am ecstatic to find that veterans are finding ways to get care in ways that make them comfortable. Enjoy.

Spc. Victoria Montenegro received an Army Commendation Medal, complete with a “V” for Valor for helping her other team mates when her vehicle exploded in Karbala, Iraq. That same accident also threw shrapnel into her forehead and right eye. It gave her a complex fracture and bone loss in her left hand.

It also left her with PTSD.

Spc. Matt Ping also came back from “The Sandbox”, his time spent in Northern Afghanistan, he found himself mixing flashback with childhood memories. For him, the thought of a pharmaceutical approach, the normal approach taken by the VA, was too unappealing.

For both of them, a different kind of therapy program has been incredibly beneficial.

The Walter Reed Medical Center in Washington, D.C. has a program, run by Roseanne Singer, that helps veterans deal with their PTSD through the written word, mostly poetry. Participants are welcome to come to an informal gathering that takes place in the lobby of the Mologne House. Participants are under no obligation to participate, they may come whenever they feel comfortable, talk as much or as little as they like, and share or not share what they have written. The program does not analyze or critique, but rather focuses on getting veterans who find it otherwise difficult to communicate their feelings to convey them through writing. Or, as Ping , also now a part of Lisa Rosenthal’s Vet Art Project in Chicago describes poetry therapy:

“Poetry helps me deal with coming back to a society that’s gone in a different direction,” Ping said. “Coming home is one of the strangest things I’ve ever encountered. The 16 months of isolation and being secluded and then coming back and trying to be the same person you were before you left. I don’t know if that’s possible.”

Ping also has a blog where he shares his poetry (I have only scanned the front page, and I make no guarantees about triggering language).

Montenegro’s poetry focuses on the pain of being a “young, short, wounded female in a world of men,”.

“A lot of times around the hospital, I’d be mistaken for somebody’s family member,” she said. “It bugged me.”

Overall, finds the self-paced program beneficial, and enjoys the control over her own healing the . There is no pressure to heal at an expected rate, no one telling her that she should be over it by now. If she doesn’t want to share something, she doesn’t have to.

You can read her poem “Perspectives” (which I thought was moving) at the S&S link, and if you have a flash player you can listen to her read it.

The more ways we find to help our returning troops the better. If they aren’t thriving in the traditional therapy programs (and I can understand why), or if they aren’t being given proper therapy in addition to their drug treatments (I can relate), then we need to find therapy programs that do help them. We owe it to them.