Tag Archives: disability

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

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.

Dear Imprudence: May I Burden You?

Gentle Readers!

I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.

This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:

Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?

Paulette Mann, Rye, N.Y.

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.

I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.

I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:

First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.

Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*

But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”

Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).

Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.

Oops. Was that sarcasm?

My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.

It’s asking a lot, I know. But it may make a difference.

I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.

What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.

A special thanks to bzzzzgrrrl for the link to this letter!

Recommended Reading for 06 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.

Galt Museum Blog: Making a Difference (Thanks to Penny from Disability Studies at Temple U. for the link!)

As I called her earlier this week to book a class, she related the following story to me.
For years, Blanche has told students about her limited vision and says that if they see her out and about in the community, they should come up to her and say oki (Blackfoot for “hi) and introduce themselves because she won’t be able to see them. In August this year Blanche was at Wal-Mart shopping with her son and grandson. As she was sitting there, a young girl walked past her, stopped and then walked towards her with her hand-outstretched. When she got in front of Blanche she said “oki” and then “oki, Museum Lady.” She was with her young brother and turned to him and said “this lady works at the Galt Museum. You and me and Mom and Dad should go and visit her there one day.”

Public News Service: Disability Activists: Dump the Pity

For 60 years, Jerry Lewis has hosted the Muscular Dystrophy Association annual Labor Day telethon. And for about 20 years, one of “Jerry’s Kids” has been at odds with him over the way the money is raised.

Mike Ervin appeared on the telethon when he was six years old. Now he’s a writer and disability rights activist who speaks out against the telethon because he claims it promotes stereotypes of people with disabilities as objects of pity.

Deafinitely Girly: Things my ears do instead of hear!

Isn’t it amazing how my ears are so utterly useless at their originally intended purpose, and instead able to tell me when someone loves or hates me, and when danger is nearby?

Did they miss the memo about actually having to hear, too?

Pipecleaner Dreams: Special Exposure Wednesdays

Well, for many reasons, Ronnie does not like DeafTalk at all. But, yet another interesting turn of events happened at the doctor’s office. Ronnie was on a standard size exam table. The DeafTalk machine was positioned in front of him. Only problem – the interpreter could only see Ronnie’s knees.

VictorVille Daily Press: Change in ADA regulations concerns local service-animal owners

That will all change next spring when service rats, cats, birds and some others will be disallowed under ADA amendments recently signed by U.S. Attorney General Eric Holder. The new rules will allow canines to continue to be used as seeing eye dogs and to alert seizures, but dogs will not be allowed to be used as service animals for emotional support. In recent years, dogs have helped bring normalcy to children with autism, soldiers returning from war with post traumatic stress disorder and more.

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.

Pondering Illicit Usage of Accessible Spaces…

I was driving back from dropping Kid off at school today, and I noticed that a delivery truck at the public library was using the accessible parking and accessible ramp as parking and loading dock space…

We have been having some conversations about accessible parking spaces and the policing of those spaces, and the blocking of those spaces and/or using of those spaces by persons who do not need them or have the right to them.

What thoughts, have you, gentle readers, on this particular use of these spaces? I have seen this in other places around our base, though I can’t recall if I have seen such a thing in other non-base places, because I have just begun to notice them (perhaps this is a product of some kind of privilege of mine). Even if it is early morning, should delivery vehicles be taking advantage of these spaces like this?

Recommended Reading for 02 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.

Sorry for the late post, folks! Pesky little Typhoon and all!

ITWeb: 1up for gamers with disabilities

It’s hard to say if there is any disability that limits someone from gaming, according to Coe. “With so many innovative peripherals such as over-sized buttons, muscle twitch sensors, and thoughtful customisation, I think we can modify anything for anyone.”

The Living Artist: Accessibility FAIL: Ross Park Mall

17th in line, 90 minutes to go until opening. Feeling my back starting to twinge, I sat down on the floor. A minute or two later, mall security guards came over and told me I had to stand. Even when we explained that I had a back injury and couldn’t stand for very long, they cited “safety issues” and said again, I had to stand. Since I didn’t feel like getting into an argument (and possibly getting all three of us kicked out), Aiden and I left.

Think Progress: Alan Simpson Says Veterans Who Are Agent Orange Victims Are ‘Not Helping Us Save The Country’

The system that automatically awards disability benefits to some veterans because of concerns about Agent Orange seems contrary to efforts to control federal spending, the Republican co-chairman of President Barack Obama’s deficit commission said Tuesday.

Former Wyoming Sen. Alan Simpson’s comments came a day after The Associated Press reported that diabetes has become the most frequently compensated ailment among Vietnam veterans, even though decades of research has failed to find more than a possible link between the defoliant Agent Orange and diabetes.

“The irony (is) that the veterans who saved this country are now, in a way, not helping us to save the country in this fiscal mess,” said Simpson, an Army veteran who was once chairman of the Senate Veterans’ Affairs Committee.

Rolling Around In My Head: The Battle

Three days ago we went to our local grocery, which had just opened after going through a several month closure due to renovations, and I noticed something slightly odd and yet wildly infuriating. They have 7 or 8 checkout aisles, one of which is designated as a wheelchair lane. It’s a lovely lane for me especially when I am in my power wheelchair. I’m wide, it’s wider, the lane is widest – a lovely fit wouldn’t you say. It’s so much better than what they had before. So, anyways, back to being annoyed – which through a mammoth act of will I manage NOT to be all the time. They had all the aisles open, that’s ALL of them, except the wide wheelchair aisle.

New York Times: Study Says Brain Trauma Can Mimic A.L.S.

A peer-reviewed paper to be published Wednesday in a leading journal of neuropathology, however, suggests that the demise of athletes like Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.

Although the paper does not discuss Gehrig specifically, its authors in interviews acknowledged the clear implication: Lou Gehrig might not have had Lou Gehrig’s disease.

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.

Girls in Pants: The Very Special Lesson on How to “Draw the Chair”

Cover for "Girls in Pants: The Third Summer of the Sisterhood" By Ann Brashares, a light orange cover with the title in bright blue, authors name at bottom, and a pair of well worn blue jeans centered over the names of several universities "Brown, RISD, University of Maryland, Williams) in the background in darker orange.Gentle Readers! It has been a long time and I know you were afraid that I had forgotten to read and review Ann Brashares’ third installment of the much beloved YA series The Sisterhood of the Traveling Pants! Well, fear not! I managed to fit it in whilst chewing my way through Terry Goodkind’s Sword of Truth series (don’t you worry, I have something for all of you on that, as well!), which is not a small feat. Sometimes it is nice to read a book that isn’t beating me about the head with an Ayn Rand-ian philosophy cudgel.

*ahem*

*stops derailing her own post*

For those of you who haven’t read The Sisterhood of the the Traveling Pants series, I can give you my brief brush up, and if you have, feel free to skip ahead to the rest of this post.

The Sisterhood of the Traveling Pants is a wonderful series about four young women: Bridget (Bee), Carmen, Lena, and Tibby, born withing seventeen days of each other. They are more than just friends, having grown up together due to their mothers being best friends, and having grown so close that they forget where one ends and the other begins. It is not uncommon to find Tibby tapping her foot on Lena’s leg or Bridget leaning her chin on Carmen’s shoulder while playing with her hair. They can tell when each other are hurting or hiding something or bubbling over with joy or exciting news. They have grown up sharing in each others’ joys, triumphs, losses, and sorrows. They have experienced growing pains and growing up as a unit and have leaned on each other for support through things like Carmen’s parent’s divorce, Tibby’s parent’s decision to have more children when she was much older, and Bridget’s mother’s suicide. Even as the other three mothers drifted apart, they seemed to hold tighter to each other Continue reading Girls in Pants: The Very Special Lesson on How to “Draw the Chair”

The “Gifted” — Who Needs Assistance When You Just Work Hard Enough?

Terry Goodkind’s Sword of Truth series, recommended to me by The Guy, my partner of several years now, whom I thought loved me, seemed innocuous enough. I thought it a simple fantasy series woven with a love story (“woven” here should read more like a nice cudgel to the head), which I was looking for. I thought it would be a nice epic fantasy, like Kushiel’s Dart, or something to sate my need for a good run of fantasy novels.

I however, didn’t heed Anna’s warning, when she asked me whywhyWHY would someone who loves me recommend a book series to me where a chicken is written in as EVIL personified (this is actually a simplification of the storyline, but it is true, nonetheless…), and as it turns out I think Anna may love me more. Who knows. Maybe I was hooked by the way the first two books ended with just the most convenient and precious heterocentric endings ever (there is one brief nod in the fourth book to homosexuality that seems it could be positive, but then it ends sadly, and seven books later there is no happy ending for this character).

The Sword of Truth series, however, does have many good qualities. It has several well written female characters whom I fell in love with, but, as I will write more about at my home blog, all seem to be written to be smitten with and to be in the service of the central protagonist, Richard Cypher/Rahl. They simply fall all over themselves to serve him, to love him, and to swear their lives to protect him with everything they have. Even if they were once evil or if they have tendencies to be evil (it’s just their way, you see, some women can’t help it), they somehow over come it because his presence is enough to ignite a spark to make them want to fight for their own lives him. I mean his cause.

But the Sword of Truth series isn’t just an innocent fantasy series. It isn’t even a series filled with tropes about women characters that I love that happens to beat me upside the head with forbidden romance and a love forbidden to procreate. It is a cautionary tale that warns of the evils of allowing communism to take over your life. This strange story of caring for your fellow man is bent into a monolithic monster of a machination that kills everything it touches. It simply asserts that you must live in misery for that is the only way that everyone can possibly meet the needs of every human evil, and makes the horrible and incorrect logical leap that religion is somehow tied to it, that this life is meaningless and that goodness can only be obtained in the hereafter. I can’t say I disagree with the atheistic themes, but really, a horse can only be beaten so many times before I glaze over and gloss over entire pages of exposition and soliloquy.

To be righteous in this world that Mr. Goodkind has created you must be willing and — key word alert here — able to fight for your own life and protect it with everything you have, up to and including killing those who would take it from you. With sword, with your bare hands, with magic if you are … gifted.

Yes, “gifted”. Being born with the ability to use and be touched by magic is considered a gift, which is not an uncommon theme in fantasy fiction and pop culture, but Goodkind takes it a step further, it seems to me. It is almost as though magic is another sense, an ability above and beyond that makes up for any other sense you may lack. Because if there is one thing that is all but lacking from this world that Mr. Goodkind has created, it is disability on the side of the bringers of good.

Even Adie, the “bone woman” (who oddly enough, having the speech pattern “I be” in the books*, is depicted as a non-white woman in the television series equivalent Legend of the Seeker even though that is now how she is described, but she is All Exotic! with Bones!), who had her vision stripped from her in her youth by a group of anti-magic zealots known as The Blood of the Fold by pouring bleach in her eyes, has learned to see. Her “gift” has enabled her to see. In fact, her vision, as is noted many times in the books, is often better than those who must rely on their ‘non-gifted’ vision.

I am going to drop the quotes from here on out, because it is getting tedious, and I think you get the point.

Adie never had to learn how to access the world around her. She never had to learn how to stumble around and feel with her other senses. She did, however, have to learn how to see with her magic, which made up for the vision which wasn’t there. This gave her the ability to be worthy, in the world that Goodkind created, to be able to fight for her life, and be allowed to live. People should just try harder, as Adie did. If you can’t get by in life, it is your own fault, and you are not contributing properly to the artwork that is the nobility of man!

You can understand why I was having a problem here.

Normally with pop-culture and fiction, there aren’t really absolutes, and I admit that there are multiple ways of interpreting things, but Goodkind has done a unique thing here: he has created a world of moral absolutes. This is right and this other things is wrong. What Richard Rahl (the protagonist) believes is right, and what he is against is wrong. There is clear good and evil, and the lines are rarely blurred. This use of a gift of magic allows people who otherwise have flaws to remain on the correct side of Richards moral compass. Richard, and Goodkind himself, could be described as Objectivists, which I think would clear up my frustrations. It should have set off alarms as soon as the philosophy lessons started to seep into my fantasy novel. Except OOPS! Mr. Goodkind says he is not a fantasy writer, merely a fiction writer he says (fuck you, fans!), so I have been wrong all along…

But Adie couldn’t be useful to the story, she couldn’t be the powerful and badass sorceress that she is depicted as being if she was indeed blind, amirite? Because if she was wasting all of her time trying to adapt to a world that was refusing to make accommodations for her she wouldn’t be able to fight for her individual life, or for Richard’s noble cause of laissez faire Capitalism freedom for all mankind (and I guess some of those womenfolk too).

The only time that her magical eyesight didn’t work was when she was faced with a woman, Jennsen, who was born without even a spark of the gift, called a “pristinely ungifted” person. She can not be touched by or interact with magic. Turns out, that Jennsen is Richard’s half sister, and her being ungifted is the bi-product of Richard’s gift. There can be only one! She has to be ungifted so that he can be gifted. It is very complicated, and there is an entire race of people on whom Adie’s magical eyesight doesn’t work! And Jennsen had to help Richard rally them up, because they were blind (oh the tropes and ableist language abound!) to evil, and their pacifist asses wouldn’t raise a finger to fight for their artwork of individual self interest.

I was just frustrated beyond all belief.

So if you want a nice stew of -ism and fuckery passed off as philosophy and disguised with characters that you will certainly love, I recommend Goodkind’s Sword of Truth series. All eleven (soon to be twelve!) books of it!

EDIT: 01 Sept: I forgot a couple of links when I finished this post. Apologies!

I Wonder If I’ll Get Delay of Game…

I received an email from my Primary Care Manager the other day.

She responded to my message that I needed refills even though it wasn’t time for me to come back in for a visit yet to let me know she had arranged for all of my scripts. At the end was something that winds up keeping me awake with worry.

“I’ll be leaving [the hospital] 10 September.”

Fuck.

“I’ve told [new doctor taking her place] about you to make sure he is up to speed.”

*panic begins*

“I wish you well.”

I’ve made bad sports metaphors about the way that good health care goes when you have a chronic condition, and your doctor leaves. Basically, my center is out for the season. The thing is, pucks just started flying in from all directions as very slight things have started to go awry, and we’ve been trying new things to fix them. I’ve agreed to a few new referrals that I’ve declined in the past (such as seeing the Neurologist when in the past I’ve been shamed and yelled at by them), some alternatives to my current regimen.

Now, I feel not only ill-prepared for the season, but naked on the ice for the game.

A change of doctor, especially when it is unexpected is alarming. When things have been going well for so long. When my current doctor has done so well advocating for me. When she has insisted that I not be ashamed to ask for more pain medication. When she has listened, not only to my medical concerns, but to my life concerns, because she really believed that they were equally important.

Perhaps the new doctor will be just as wonderful. Perhaps he will storm onto the ice and intercept the puck and make a saving play, and find answers we didn’t see before. Perhaps things will continue and I will notice little or no difference. I might get lucky and this new doctor will allow me to email him for prescription refills to.

But what if he isn’t?

It’s the “what if?” game that is causing the voice inside to shriek that everything is going to fall apart. If for some reason this new doctor turns out to be a nightmare the process of finding another one is not simple. It takes time. It takes spoons. It takes a calm place in my mind that I am not sure I can achieve during this stream of events.

*The title refers to this hockey penalty. In keeping in the spirit of my bad sports metaphor, for fussing about a new doctor…