Tag Archives: myths and misconceptions

Guest Post: Reflections on being Jewish and Autistic: Different minorities, same critique

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her last guest post for FWD was “I Do Not Suffer From Autism.”

In writing this piece, I in no way wish to imply that my approach is the only approach, that having a religion is better than having no religion, or that Judaism is right and that other paths are wrong. As long as people act consciously and ethically, I really don’t care what they believe, or whether they avoid religion like the plague. I have been involved in social justice work on behalf of all people from a progressive Jewish perspective for much of my life, because that is the culture in which I find myself at home and because it provides me with a useful framework for action. I abhor proselytizing and fundamentalism of any variety; I reject violence, no matter who carries it out; and I support a just, two-state solution in Israel/Palestine, may it be in our lifetimes.

For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.

All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:

We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)

The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.

And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.

We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.

Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.

We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.

Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.

We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.

And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.

We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”

Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).

Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.

We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.

I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

I shudder to think of how many people still believe this kind of thing.

Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.

There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Guest Post: I Do Not Suffer From Autism

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

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?

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.

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.

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!

Recommended Reading for 30 August 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.

Venus Speaks: Despair

Now, I don’t have a good history with the social security office. The two times I visited one, I was brushed off. I don’t know if they took one look at a mostly able-bodied young girl and said, hey, she must be trying to trick us, but it sure as hell felt like it – they told me that I needed to apply online, entirely online, and that they were so far booked into the future that there was just no point in scheduling. As in they refused to schedule me.

And lo, as I am filling out the disability report tonight, not only do I lose the internet and all my progress, but I just happen to notice before it goes down that you can’t apply for SSI online, you can only fill out the adult disability report, print off a few forms, and schedule an interview. You know, that interview that my local office couldn’t afford to give me.

Those Emergency Blues: The Title is About the Power

Titles, in short, are about establishing status and power. Why else worry about them? They are utterly irrelevant to actual patient care and one’s ability to do the job. Insisting on their use can create an atmosphere of professional intimidation that suppresses the free exchange of information. Health care professionals expressing power over patients is definitely not a good way to create therapeutic relationships. Implicitly saying (or believing) the title makes you a better person or supplies you with definitive or superior knowledge about patient care is dangerous as well as destructive to collaborative relationships with other health care professionals. In the end, it results in bad care of our patients, and of each other.

Pipecleaner Dreams: A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven’t completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, ‘Down Syndrome Girl.’

Haven’t heard it? Well, here is a sampling of the lyrics:

And though her pretty face may seem a special person’s wettest dream. […]

You must impress that ultra-boomin’, all consumin’, poorly-groomin’, Down Syndrome girl. […]

ABC News: Too Special for the Special Olympics (via Patricia E. Bauer, thanks to Nightengale for the link!)

The problem arose when Jenny’s school district entered an agreement with the Special Olympics, promising to abide by the organization’s rules. That meant no court time for Jenny, though the organization won’t say whether it’s because of the oxyen, or Simba, or both. [sic]

Ablegamers: Bungie Punishes You For Quitting Early

The fear is that disabled gamers who need to quit in the middle will be labeled as rage quitters. Certain people’s disabilities can hit at a moments notice, forcing them to quit out of a game. While according to the statement Bungie is only punishing those who habitually quit, it doesn’t discuss how they gauge that. Is that a certain percentage of total games? Frequency? What?

What has gone so wrong that it has come to this? Has Bungie exhausted all other options before walking down this path? Not really.

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 26 August 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.

Westborough News: Marines shoot calendar for male breast cancer research

They are the few. The proud part has been a bit more of a struggle.

“Most guys don’t want to reach out, don’t want to tell anyone they’ve got a woman’s disease,” Pete Devereaux said yesterday as he talked with fellow male Marines who’ve been diagnosed with breast cancer.

INCITE! Blog: Reflections from Detroit: Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit

We would not just think about disability as separate from class, age, race, queerness, family, children, gender, citizenship, violence, but we would understand it as intimately connected.  We would think, not just about “conference and workshop time,” but we would also think about social time and what social spaces were accessible and how we would make sure no one was isolated or left out.  Because in our movements much of the relationship building, socializing and bonding is done in very inaccessible ways in very inaccessible places—we know this all too well.

New York Times: When Battlefield Humor Backfires (Extra Trigger Warning)

And so the doctor’s determination not to lose a contest of wills undermines the opportunity to have successful discussions about treatment. The patient instantly senses that the doctor distrusts and dislikes him, and this, coupled with the patient’s lack of respect toward authority figures, leads to a rapidly deteriorating situation, often ending in a discharge against medical advice — much to the team’s relief.

NPR: Administration To Appeal Ruling in Stem-Cell Case

The Justice Department said an appeal is expected this week of the federal judge’s preliminary injunction that disrupted an entire field of science.

Judge Royce Lamberth on Monday threw the research community into disarray when he said a federal law invalidated Obama administration guidelines on human-stem-cell research. He concluded that two researchers challenging the Obama stem-cell policy stood a good chance of success as the case moved ahead in the courts.

The judge said any scientific projects using human embryos required their destruction, which flouts a longstanding federal law.

Something More Than Sides: Dear Doctor: Actually, I *Am* Sick

Let’s completely ignore the actual health concerns in exchange for shaming a young girl. Classy. And let’s not forget the fact that, were I suffering from an eating disorder, this is not the way to broach the subject. I left that appointment feeling shamed and humiliated, and with no answers.

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.

I’ve Got Your More Responsible Pain Management, Right Here

Not many of you would know this but I had my first experience with acupuncture the other day.

I went to see a physical medicine doctor about a TENS unit because my current dose of my narcotic pain medication for breakthrough migraine and body pain is no longer sufficiently covering the amount of breakthrough pain I am having, and as a personal preference I have decided to seek alternative methods before I agree to increase the current dosage (which honestly, I am already trying to squeak by with as little as possible because the hospital here is so stingy with it, and I am trying to be Model Patient). The physical medicine doctor, for whom I would make up a name for him, but in all honesty, I have, currently, three Dr. Kims and two Dr. Lees  so I don’t feel the need to do so, agreed quickly to get me set up with the TENS unit. I just have to come in to see the physical therapist to try it out, and they will order it for me. In the week between, Dr. Kim asked if I would like to try acupuncture.

Now, I have a very high level of phobia surrounding needles, and the thought of acupuncture, being pins, doesn’t stray too far from that for me. This is not the first time I have been asked to try acupuncture. But Dr. Kim wasn’t pushy. He offered it casually, mentioned that he is licensed and certified, and that he could start right away, if I wanted to. He smiled in an understanding manner when I explained that I was afraid that any benefit might be canceled out by my anxiety.

He spent ten minutes calmly explaining to me a slightly different method, more commonly known to military doctors as “Battlefield Acupuncture”, where pins go in my ears and stay for a week or so, at its most basic form. I agreed to try it, not wanting to have another doctor click their tongue at me for not trying everything and not wanting to give anyone a chance to call me a drug seeker. But when I say “pins” I tell you that these tiny things felt like thumb tacks piercing my non-pierced ears, five in each ear with two in the inner part (ten total). I was instructed to sleep in a supine position, which would screw up my sleep, since I am a side sleeper. But he told me to keep them as long as I could stand them.

I lasted two nights of thrashing around. And The Guy told me he was proud of me for sticking it out that long. I felt like I was in agony the whole time. I could think of nothing else.

I have seen noticed that the military is leaning towards pushing acupuncture on troops, which I think is odd, since getting other “alternative” care (things as innocuous as chiropractic care) and getting it covered by our insurance is like getting a root canal. I believe that more options is better, but it was the framing of these alternatives that bothered me.

The first time I had heard that acupuncture was being offered to troops was in an AFN commercial. AFN is the military’s overseas entertainment network, both on television and radio. They offer commercial free programming for military families. But they have AFN sponsored spots and informercials. One of those was for acupuncture, celebrating the troops who were asking for it, choosing to treat their pain in “responsible ways”, which clearly spoke to me that people who received no help from such methods (such as I discovered I did not), or where it was not available, or who chose not to, were irresponsible for choosing narcotic pain relief methods.

And that just doesn’t sit well with me. I will defend against screeds like this writer at Forbes, who are just simply dismissive of methods that have helped actual people, because the author is deliberately dismissing their experiences. That would be like someone telling me that all chiropractors are quacks because they don’t ever help anyone, when I know for a fact that the last doctor to give me actual, long-term relief that didn’t require daily narcotic care was a chiropractor specially trained in treating patients with fibromyalgia. At the same time, however, I know that suggesting that because I use certain medication to manage my pain doesn’t make me less responsible. I am pretty sure that managing my pain makes me responsible for my pain. Certain people may not like how I am choosing to do it, but it is still up to me how I choose to do so, making it my responsibility. No one but me gets to make a moral judgment on that.

It isn’t widely available. I am fortunate, were I willing to give it another go (and possibly, I might be talked into the more traditional style). Acupuncture is widely practiced in Korea, so it is readily available. But not every military medical center is so well equipped. In fact, I think your chances of getting chiropractic care are better. They’ve hit the big ones, like Walter Reed, and it seems Fort Hood, which has a high deployment rate, has one as well. I am unclear how many other branch facilities are joining…but that is hardly accessible with so many needing it. I am also unclear if this is widely available to family members, or if this is another perk to my medical record still being messed up because of Dick Cheney’s privacy law funhouse or whatever it was that has left me listed as still active duty and of a higher rank than I actually was (and yet, with my hyphenated post-married name, which I never used while active duty…).

Often times it is being coupled with Chaplain care and yoga, which isn’t going to help everyone, and you shouldn’t be forced into one in order to get the other. Nothing adds to my needle phobia like you praying for my soul. And sometimes people with chronic pain shouldn’t be forced into certain types of exercise, which really is the Military Way, I know, but they need to understand that it can do more harm than good.

It’s a big Catch-22 of hope. I hope to see a broadening of options opened up for the masses of troops coming back from battle hurting from a decade of two wars (why, yes, I do say that a lot), or even as a way to help troops still in combat zones who have to stay and carry on. I hate to see it being set up as another way to shame people into using it if they aren’t ready to be the shiny happy Model Patient.

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