All posts by Ouyang Dan

About Ouyang Dan

is an extremely proggy-liberal, formerly single mommy, Native American, invisibly disabled, U.S. Navy Veteran, social justice activist and aspiring freelance writer currently living in South Korea on Uncle Sam's dime. She has a super human tolerance for caffeine and chocolate and believes she should use those powers for good. She said should. She is not a concise person, and sometimes comes on a little aggressively in comments. Sometimes her right arm still twitches when military brass walks past her, but she would rather be reading YA Lit or pwning n00bs. She can be found being cliche about music, overthinking pop culture, and grumbling about whatever else suits her fancy at her personal website, random babble.... She also writes about military issues for Change.org's Women's Rights blog. If you have something interesting to say email her at ouyangdan [at] disabledfeminists [dot] com. Lawyers in Italy looking to hold lottery winnings in her bank account may wait longer for reply.

Veronika Decides to Die: A Very Special Lesson in Living Your Life Right

Book cover for Veronika Decides to Die by Paulo Coelho. A mostly blue cover depicting a snowy scene with a blurry shadowy figure of a (presumably) woman walking on the snow among some blurry shadowy trees.Every now and again I come across a book that I enjoy enough to read repeatedly. I have several of these on our bookshelves at home. The Harry Potter Series is an annual read for me in my YA set. The Kushiel’s Legacy series is another, in my Not YA set. There are, though, few books that I have encountered that I have read and enjoyed at different periods of my life when that have meant different things to me. Particularly because I have gone through some dramatic life shifts, and because those shifts have given me some fairly fundamental changes in how I view the world, politics, religion, human nature, and mostly myself as well.

One of those books, which has had a great impact on me and which I have enjoyed in immensely different ways at hugely different periods of my life, partly because of the way the author’s experiences are painted into the word work and partly because of the story itself, is Paulo Coelho’s Veronika Decides to Die. Veronkia was recommended to me by a friend who has in the past recommended other books that I have always enjoyed for one reason or another (including The Hitchhiker’s Guide and I, Lucifer, and who also gifted us with a set of 4.0 books for our wedding — you will either fully appreciate that or you won’t), and for me and the way I chew novels for breakfast was a quick read. It took me the better part of a morning. That friend knew that I sometimes practice what is commonly referred to as astral travel, and what I sometimes more commonly lump in with lucid dreaming (they feel the same to me) and thought that I might find the scenes about this topic interesting. I did. In an odd and slightly disturbing way.

In fact, that is how I would describe my first foray into Veronika. Odd and slightly disturbing.

So: Spoilers Ahoy and also a Trigger Warning for descriptions of attempted suicide, a potentially upsetting rape-like scene, and descriptions of mistreatment in a mental hospital.

Veronika Decides to Die (Veronika decide morrer in the original Porteguese) is set in Ljubljana, Slovenia, tells the story of Veronika (I suppose you could have parsed that one out), a 24 year old young woman, who has decided that she has reached the height of her life. She had determined that from this point that life and beauty will probably get no better, and out of no real sadness or unhappiness she has made, in her opinion, the perfectly rational decision to end her life. Her incompleted attempt on her own life winds her up in a mental institution called Villette, in Slovenia, where she awakens to the news that her attempt has irreparably damaged her heart; she is told she has only days to live.

The story is supposedly based on Coelho’s own experiences in mental institutions in his youth where his parents send him for refusing to acquiesce to their demands that he become an Engineer instead of a writer, or at least something useful and respectable. Coelho’s refusal to become something productive proved, to them, that he was “mad”. One of the central themes in Veronika is the idea that collective madness is really sanity, and that sanity is really in the hands of the beholder. Essentially, if everyone in a room, or even a kingdom, believes one reality to be the truth, except for a single person, irrespective of that one person’s authority (the doctor, a king, etc.), then the sanity of that authority is irrelevant, because it is the collective reality of the masses that matters and thus becomes the rational way of thinking.

The way you view this theme really depends on your views of people’s right to define their own mental abilities. I viewed this book through two very different lenses in my life, one where I was fighting my own mind, and one where I was coming to terms with myself instead; a period of self-acceptance rather than self-loathing (still working on that last part). Veronika depicts a mental institution that both suppresses people’s free will, yet allows them to stay beyond the requirement that binds them if they choose to do so. Don’t be fooled, however: There are still many things going on, such as forced medication, forced inside and outside time, and even a scene that describes, very graphically, a treatment of induced insulin shock that sends a patient into what she calls a state of astral travel. The balance of treatment of human dignity with that of the way that disabled people are often treated as objects to be shuffled around and poked and strapped down is troublesome at best, and hard to read without a watery field in front of you at… well my worst. Maybe not yours.

Very troubling to me is the overarching theme, embodied in Dr. Igor, the head psychiatrist at Villette, who has decided that Veronika, a beautiful and vibrant young girl, is wasting her life, and must be taught a Very Special Lesson. So sad, is it, that she has decided to throw away youth, and beauty, and that she is ignoring all that life must be waiting to hand her. He, obviously, knows her life better than she, and is uniquely prepared to teach her that she is, indeed, Doing It Wrong. R-O-N-G, even. How good of Dr. Igor, this man, to come and rescue this poor, helpless, and foolish girl from what might have been the worst mistake ever.

Dr. Igor has this theory, see, that people, like a defibirillator paddle on a heart, just need a jump start to avoid the heart attack that is this mental illness, something he calls “vitriol”. He believes he can shock people into appreciating life and just help them realize that they can simply buck up and learn to love life again.

I don’t want to spoil the book for you, gentle readers, if at this point you are still with me, so I won’t go into detail about how Veronika becomes not only the tool by which he provoke many of the residents of Villette, including Eduard, a patient diagnosed with schizophrenia who becomes a love interest for Veronica, and Mari who has frequent panic attacks. I also won’t tell you how Veronika learns her own Very Special Lesson, because she is not left out of that condescending rule of Dr. Igor who swings his diploma like a true Patriarch. She suddenly sees that she is free from the rules of a society that has given her a laundry list of expectations, and that she now may act like the “crazy” person that she is being treated like. No one believes that she just felt like ending her life, for no particular reason, so she may as well act the part. She starts to see the comfort that is Villette’s lack of accountability.

I think this book speaks strongly to the way that we dehumanize and mistrust mental health patients and people living with any variety of mental illness. Even if I don’t always appreciate Coelho’s delivery.

A caution to you, gentle readers: There is a rape-like scene, depending on how you read it (the first time I read the book, I did not read it this way, the second, I certainly did). Veronika performs a masturbatory act in front of a person who neither consents nor denies consent. It is fairly graphic in description, and it very much made me uncomfortable, no matter how “freeing” it made Veronika feel.

The book was made into a movie that I have not yet seen, as it didn’t appear at any theatre anywhere near where I was living. It stars Sarah Michelle Gellar as Veronika (a stellar choice, IMO), and David Thewlis, most well known to me as Professor Lupin from the Harry Potter series, as Dr. Igor. Should I get the chance (I love you, NetFlix, for coming to my APO!), I may revisit the review.

Who out there, gentle readers, fellow contributors, has read Veronika? Thoughts? Popcorn? Tomatoes?

Book Cover Image: Wikimedia Commons

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Signal Boost: Assistance Dog Blog Carnival — Your Input Requested

Gentle Readers!

Sharon and Barnum over at After Gadget have it in mind to begin an Assistance Dog Blog Carnival. The majority of the information can be found at their blog:

I love blog carnival and blogswarms. I try to participate in them as much as I’m able (which is a lot less often than I’d like). Lately, it’s been occurring to me, with the blossoming of so many new, thoughtful, lush, sassy assistance-dog blogs that it might be time to start an AD carnival or to do a blogswarm.

However, this would require many interested participants:

– Sites to host the carnivals (if we went the carnival route);

– Bloggers to submit their posts;

– Readers to read the blogs!

Sharon is asking that anyone interested, or with feedback, answers to the questions posed at After Gadget, please leave them in the comments section there. I hope that you can show some support for this, and if you know anyone who might be interested, please feel free to pass this information along!

Recommended Reading for 30 September 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.

Can you believe it already the end of September?

The Vibrating Square: Respect (Sent in by The Untoward Lady)

But it’s not about intent. It’s not even about the very real impact that such language has on people like me. It’s not even about the fact that what you said is hurtful.

Brilliant Mind Broken Body: After the Separation (Glad you are well again and home, Kali)

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

The Consumerist: Continental Sorta-Apologizes For Not Allowing Service Dog On Flight

Jessica says Continental offered her a couple of coupons to make good — one for 10 percent off of a flight and another for a free drink. She says she’ll need to give them to a friend because she’s given up on flying for the time being.

Disability Rights California: The California Memorial Project

The perfect last day of a California summer drew a collection of advocates, supporters and community representatives to the Stockton Rural Cemetery. The gathering honored hundreds of people who had died anonymously while residing in the Stockton State Hospital, established in 1851 as the state’s first “asylum” and closed in 1996.

Disability Books: Stevie Wonder Calls for International Action to Enhance Accessibility for Visually Impaired Persons

World-famous singer-songwriter and UN Messenger for Peace Stevie Wonder called on the international community to take action to enhance accessibility for all those with physical disabilities. Speaking at the opening of the annual meetings of World Intellectual Property Organization (WIPO) Assemblies on September 20, 2010, he challenged delegates to conclude an agreement on improved accessibility to copyright protected works by visually impaired persons (VIPs) within a year.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 27 September 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.

Brilliant Mind, Broken Body: Emergency Fail (Thanks for the link, Kali!)

The ER supervisor said I had the option of going elsewhere.  Bullshit.  When you’ve been brought in by ambulance because you’re barely able to stand with tons of assistance, you don’t have the option of going somewhere else.  Especially when somewhere else is on the far side of the city.

SexAbility: Decision Made (Warning: Some images and content NSFW) Thanks to K for the link!

So I’ve finally decided to shut down SexAbility. I know folks have said before, “keep it up, it’s a good reference. But honestly? It’s more trouble then it’s worth. And truth is…

Crozier Center for Women: Jon Stewart’s Rally to Restor Sanity (Thanks to Monica for the link)

The implicit message behind the “Rally to Restore Sanity” is that individuals influencing America’s current political climate are “insane.” Crazy. Wacko. It’s Stewart pointing at a picture of Beck and circling an index finger around his ear. And it pisses me off.

Australian Broadcasting Company: Mentally ill “falling through the cracks”

“The number of consumers who’ve come to us and found that they just can’t get on, they can’t communicate with the agencies and they’re left often in great poverty, in great mental concern,” [Mr. Asher] said.

McClellan: Woman’s disability not evident to judge

Attorney Jeffrey Swaney was at the Social Security office representing another client when Marcella’s case was called.

“I was sitting in the waiting room when they called her. I knew it was an appeal, and I remember thinking, ‘How could this woman have been denied?’ You could see she was profoundly disabled,” he said.

Later that afternoon, Swaney got a phone call from Lisa. She had seen his ad in the Yellow Pages about Social Security disability claims.

“She said her aunt had just had an appeal and had been denied and she started describing it, and I said, ‘I was sitting right behind you.'”

So Swaney took the case. He said the problem was a lack of medical documentation.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Dear Imprudence: Just Be an Adult Already!

Here’s some nostalgia for ya, gentle readers!

My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.

I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.

Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):

Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support himhis own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?

Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!

Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.

Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.

Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.

Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):

A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.

You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.

I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.

Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.

But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.

I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.

Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.

Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.

Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.

Recommended Reading For 16 September 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.

Guiding Golden: Service Dogs as a Last Resort (Thanks to Sharon and Barnum for the link!)

There should be no correlation between a disabled person’s willingness, or lack thereof, to experiment with various options and others’ assessments of wether that person’s decision to use a service dog was made appropriately.  In the same spirit, a person who decides to use a service dog after alternatives have proven ineffective, should not be viewed as any more validated in their position than one who simply decides that the medication is not for her.

Planet of the Blind: No Wonder Blind People Have So Much Difficulty Getting Jobs, Have You Checked Out Their Computer Situation Lately?

Like my friend William Peace the administration at Iowa has come to think of me as a “bad cripple” who is simply a thorn–largely because I keep insisting that we need to have accessible campus buildings and a dignified disability culture that stands for true inclusion. Call me a thorn if you must. I simply believe that 20 years after the ADA people should be able to work and go to the bathroom by golly. When I think of how low my utopian dreams have fallen I could just cry.

Wibbly Wobbly Ramblings: A Serious Case of Discrimination against Students with Disabilities

Being forced to take a full course-load despite a diagnosis that says otherwise, forces students with disabilities to play the system and risk mental stress and burnout, to which their studies suffer and creates for them the issue of repairing the damage to their GPA.

Refusing to play the system, and, following a diagnosis, being considered part-time limits a student who cannot handle working at a job to support oneself at the same time as going to school.  It restricts students from grants, services, and the benefits of a full-time student.

Healthy Place: Sorry, Too Busy Panicking to Breathe

Right now I’m doing a little bit of all of the above. Who said multitasking’s just for the highly efficient? It’s one of the few skills that comes free as part of the anxiety package (No steak knives I’m afraid. They take away the sharp things when you shake as much as I do). If you’re panicked enough, you can do 5 million things at once. Adrenaline is just homemade speed.

Comment is free: Unemployment is no “lifestyle choice”

After 18 months, the job centre was forced to pass me on to an “Employment Zone” – a private company paid by the government for every client it got into work, suitable or not.

It offered nothing that I was not already doing: I have internet access and know how to fill in forms and write CVs. My “adviser” was the Scots incarnation of League of Gentlemen’s Pauline, who relished humiliating people better qualified than herself: “We have to find ways of hiding the fact you’ve got a PhD,” she said. I wondered how she would explain away six years. I told her that I had been applying for jobs to which I was suited in skills. She replied: “If you were suited to them, you’d be getting them, wouldn’t you? Try cleaning or call centres.” Fortunately, just as she was demanding that I come in twice a week (on pain of stopping my benefit), the temping agencies with which I was registered began coming up with short-term work in academic administration.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 13 September 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.

The Quixotic Autistic: Early Intervention: My two cents and my many apprehensions

The way I see it, early detection is the ultimate Pandora’s Box for people on the spectrum.

HP Blog: I Have Dissociative Identity Disorder: Disclosure DOs and DON’Ts

What’s comfortable for you may be unhealthy for someone else, and vice versa. With that in mind, what I offer you today isn’t advice on whether or not to reveal your DID diagnosis, but a short list of DOs and DON’Ts – things to keep in mind when considering disclosure.

Disability Scoop: Employment Gains Seen For People With Disabilities

Not only were more people working last month as compared to the month before, but more people were considered part of the workforce, meaning that they had work or were actively looking for it.

UN News Centre: At UN, countries call for strengthening of rights of persons with disabilities

Hundreds of delegates and civil society representatives took part in the three-day conference at UN Headquarters in New York to see how to better implement the Convention on the Rights of Persons with Disabilities, which came into force in 2008.

The convention, among other elements, asserts the rights to education, health, work, adequate living conditions, freedom of movement, freedom from exploitation and equal recognition before the law for persons with disabilities.

Midlife and Treachery (Thanks to Penny from Disability Studies at Temple U. for the link! Again!)

Disagreement on issues? Fine, lets.  But don’t decide I’m not a person if you disagree with me.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 10 September 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.

Clarissa’s Blog: So you’re telling me you don’t have autism?

I really admire you, you know. Not having autism must be so tough. My friend’s son was diagnosed with not having autism and she was heartbroken. She cried for three days. What do you mean why? Of course, you seem completely normal but have you seen those neurotypical people they show on TV? (In a dramatic whisper.) They are all freaky and weird and they keep banging their heads against the wall. Well, you are right, of course, anybody would bang their head against the wall if their mother cried for 3 days because they are the way they are, but still . . . It’s tragic for a parent to realize their child will never be happy, or have a career, or get married. Yes, it’s true, you seem pretty happy, and your career is great, and you even have a husband.

Switchin’ to glide: Maybe it’s the anti-depressants working

And now… I’m sitting here crying the biggest cry I have in years, wondering what life could have been like if I had been allowed to feel validated, or if I had ever been allowed to validate myself; because all of these small things together form a picture of person who has actually done alright, but I have felt–been made to feel–the whole time like a perpetual failure.

Ms. Marx: On Pop Culture: Anorexia jokes and celebrity diets

I don’t think there is ever an appropriate time for anorexia humor… it just isn’t funny. It is a very serious medical condition that kills women (and men, but mostly women). With websites purposefully encouraging anorexia, it needs to be clear that none of this is funny.

Please Tape Me Back Together: My head is spinning with questions

I’m frustrated.  My neurologist told me he thought I had a mini-stroke (TIA) but ran no tests.  He just told me to take an aspirin a day and asked me to show him my EDS.  Actually he didn’t ask he grabbed my hand and tried putting it backwards.  I don’t like people touching me so I took my hand away and bent it backwards.  It was a painful day anyway and that caused even more pain.  I was kinda pissed that he didn’t seem to believe me.  He’d never heard of EDS, either.  How could he not believe me when he didn’t even know what EDS is?

HR Morning.com: Employee commutes: New area for ADA accommodations? (Thanks to Codeman38 for the link!)

Would changing an employee’s commute qualify as a “reasonable accommodation” under the Americans with Disabilities Act? A federal appeals court says yes.

The case involves a woman who worked for a retail chain in Oregon as a wine steward. She developed a visual impairment that affected her depth perception in low-light conditions, which made it difficult for her to drive after dark.

She requested — and was granted — a schedule that allowed her to come in and leave work during daylight hours. The company didn’t run into any problems with her working the modified hours — indeed, sales in her department went up.

Nonetheless, the company reversed its decision.

When the woman refused to work her new shift — which would have required her to commute home after dark — she was fired.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for 09 September 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.

Raising my Boychick: Musings on mental health, in-patient therapy, and ableism: or, why isn’t there a “Hooha Behavioral Center”?

There is so much broken in mental health services, I hardly know where to begin unraveling it. Should I have sought this sort of care? Certainly in a less-ableist society, it would have occurred to me far sooner. But what sort of “care” would I have received, even with relative protections of being a male-partnered middle-class white woman? What sorts of traumas might I have risked acquiring through the experience? Would I even have been admitted, or dismissed as not-crazy-enough, and what would the pain of failed help-seeking have done to me?

Jack and Dilley: Thoughts on Therapy: Right Livlihood: Veteran Farms (Thanks to SavvyChristine for the link!)

Veterans Farm, an organic blueberry farm in the Jacksonville area of Florida, takes a life-affirming approach to empowering disabled veterans to heal, return to work, and reintegrate into American society. It was begun by Adam Burke, a veteran who came back from Iraq with PTSD and a closed head injury. Seeking to come to terms with his disabilities and wartime experiences, he remembered peaceful and satisfying work on his family’s farm growing up. He realized “horticulture therapy” provided an ideal environment for rehabilitation, and talked his wife into buying a small farm.

JF Activists: ‘The Closed Digital Door:’ State Benefits’ Websites Inaccessible to PWD

The report, “The Closed Digital Door: State Public Benefits Agencies’ Failure to Make Websites Accessible to People with Disabilities and Usable for Everyone,” describes barriers to access for people with disabilities when applying for cash and other benefits online, requesting an application, searching the website, or contacting the agency by email. These accessibility problems violate the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and many state web accessibility laws and policies.

The Globe and Mail: Caregivers suffering depression, rage

“The message here is that if we’re going to help seniors stay in the community – and we should – then we critically have to look at the needs of caregivers,” said Linda Jackson, executive director of community and ambulatory programs at Baycrest, a Toronto health-care facility that specializes in care of the elderly.

CBC News: OxyContin worries misplaced: pain experts

In Quebec, opioid use doubled over 14 years, said Kristen Reidel, a master’s student in epidemiology at Montreal’s McGill University.

When Reidel presented her findings on opioid prescribing trends in Quebec at the World Congress on Pain in Montreal this week, she said she didn’t find an increase for the youngest age group.

Rather, the highest increase in opioid use was among people over the age of 80, who tend to suffer more chronic pain.

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 at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.