Tag Archives: social attitudes

Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family.  When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from.  When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort.  I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit.  Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school.  Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively.  Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says.  These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home.  Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult.  Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life.  Her response terrified me in a way few things have: “Well, you’re the one having trouble.”  The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out.  I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved?  I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse.  They are afraid of losing me forever to a terrible situation, and cling more tightly.  I am afraid of losing myself forever by staying.  No one is happy here.  No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both.  I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening.  Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact.  I would also lose absolutely all contact with my brother, niece and nephew.  Sadly, I know that if I chose to play family politics here, I would “win”.  It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family.  I have a few very close friends from college and my neighborhood who have helped me tremendously.  I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there.  The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life.  Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way.  It is in this very community that I came to accept my right to feel angry and defeated at times.  I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days.  I am hoping that this ability and time will lead to a healthy resolution with my family.  If not, I already belong to a strong community here.

*Trust me, it works.  You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Recommended Reading for December 21, 2010

James S. Fell for the Los Angeles Times: Holistic nutrition is weak on science, strong on selling supplements

You may not know the term, but you’ve surely heard its claims. Among other things, holistic nutritionists (or HNs, as they call themselves) may teach that fluoride and pesticides are lethal, that most diseases and detrimental behaviors are diet-related and that many people would benefit from taking numerous supplements. I’ve read plenty of articles by HNs in which they assert that they are disparaged by mainstream medicine and warn you not to trust modern medicine.

Gina Kolata for the New York Times: Tests detect Alzheimer’s risks, but should patients be told?

It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.

Kathryn Roethel for the San Francisco Chronicle: Chronic migraines: When pain is all in the head

After Robertson’s headaches began, she started wearing sunglasses to school because the migraines made her sensitive to light. Then she gave up fencing – a sport she’d competed in for seven years. She cut school to half time, then had to quit altogether.

In their Potrero Hill home, Robertson’s family put in skylights because the light bulbs were too bright for her. They stopped cooking with garlic and onions because the scents made her nauseous. On the rare occasions when she is well enough to eat meals at the dinner table, her mother lowers the lights and everyone speaks calmly and softly.

David Sirota at Truthout: Why the “Lazy Jobless” Myth Persists

First, there’s what psychologists call the Just-World Fallacy — the tendency to believe the world is inherently fair. This delusion is embedded in our pervasive up-by-the-bootstraps, everyone-can-be-a-millionaire catechism. The myth of the lazy unemployed can seem to make sense because it connects those ancient fables to current news, effectively alleging that today’s jobless deserve their plight.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Mental Illness: Brain Function Impairment

Re-branding the current term “mental illness” to the more accurate description “brain functioning impairment”, will go a long way towards solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out the awful connotations of the old term. At a minimum, rebranding will go a long way toward forcing the general public to change its perception of people with BFI.

Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

Constant Vigilance

To quote Harry Potter.

It’s difficult to separate out my life into the disability stuff and what life would be like without it. I don’t remember much of my life beforehand. Something I’ve been aware of for years is how distrustful ableism has made me.

I’ve been primed to be constantly aware of other people’s attitudes. I worry that people I’ve known for years think I’m exaggerating or lying when they ask how I’ve been. The sad thing is that this isn’t an unmerited fear. I have had people turn on me. I’m all too often aware of the need to watch what I say, watch people’s faces, watch my back. Because a rumour might start, or a friend might “forget” my access needs, or someone in a position of power might make life difficult for me. It can go wrong in a split second, and it has.

I’m not the most trusting person in the world in any case, but being disabled in this ableist world has taught me that complacency is something I cannot afford. I can’t expect that people will treat me like a person, and I can’t expect to go outside and not have to worry about accessibility issues all the time. That’s so terribly sad. And this constant vigilance is now so much a part of how I deal with the world, how I go about my day, that I don’t know how I’d go about teasing it out of myself, letting myself relax, even in the event that ableism and inaccessibility suddenly disappeared from society.

[Cross-posted at Zero at the Bone]

Recommended Reading for Wednesday, 1 December 2010

Happy Wednesday, y’all! I can’t believe the (Gregorian) year is almost over. Here are some things I’ve read lately and found interesting; the usual caveats re:comments sections, etc. apply!

Gimps are HOT!: A powerchair user at an ADAPT action holds up a sign saying 'Gimps are hot! Crips are sexy! We want access too!

Photo of a protester at an ADAPT action taken by Flickr user sissyboystud, creative commons license.

C.L. Minou on The Guardian: Comment is free: Trans people are humiliated by healthcare system

Problems getting prescriptions are only the end part of the process. In the US, most doctors won’t prescribe hormones without a patient having undergone a psychological consultation beforehand. At first glance, who would object? Hormones are powerful drugs that cause permanent changes and a screening process should be in place to make sure that you’re competent to make the decision to take them, right?

Joseph Shapiro at NPR News: Olivia Welter, Other Severely Disabled Adults Win Round in Court Battle

Just weeks ago, the Welters thought Olivia’s nurses would walk out the door when she turned 21. But in late October, the family joined a lawsuit filed by the family of another disabled man who had lost services, William Hampe. The state of Illinois then agreed that it would continue the level of services that Olivia had been receiving while the case goes through the courts.

Dahr Jamail at Socialist Worker: Poisoning the Gulf’s residents

“I have pain in my stomach, stabbing pains, in isolated areas,” Rednour added. “The sharp stabbing pain is all over my abdomen where this discoloration is, it’s in my arm pits and around my breasts. I have this dry hacking cough, my sinuses are swelling up, and I have an insatiable thirst.”

Rednour’s recent problems are a continuation of others that have beset her for months, including headaches, respiratory problems, runny nose, nausea and bleeding from the ears.

John Moore at The Denver Post: Oh, the disabled can pack a punch line (note, as you can see from the title, questionable language usage abounds in this piece and it also includes reclamatory uses of slurs like the r-word)

“Like many marginalized and disenfranchised populations, there is reclamation of power that goes with being able to take words that have been used pejoratively and use them to make people laugh,” said Hill. “While I do think the primary purpose of ‘Vox’ is entertainment, it also serves the secondary purpose of advocacy.”

But furthering understanding of the disabled, she said, requires an audience not made up entirely of disabled people.

“Like most movements, if you continue the conversation only among yourselves, you’re not going to get very far,” she said. “Women, for example, can talk about ending sexual violence as much as they want, but until they have as many male comrades in the fight with them, it’s not going to stop.”

Sharon Brennan guest posting at Where’s the Benefit: The Government Is Implicated In Creating Negative Attitudes To Disabled

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed,  “75% of claimants are fit to work“, and carried on: “Tough new benefits test weed out the workshy”.

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.

Recommended Reading for October 26, 2010

firecat at Party in my head (DW): How To Be Sick

I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I’m a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I’d learn a few things and find out that I’m already doing a lot of what there is to do, and that would help me feel more confident.

beautyofgrey at The Truth That Came Before (DW): On invisible illnesses and harmful judgment

Our illness is invisible. At first, even I did not want to see our illness. I wrote it off as “discipline problems” or “unresolved anger” and resolved to become a better disciplinarian, better parent, and to slowly count to ten. I assumed it might be due to changes in our life. Later, doctors did not want to see our illness. Everyone had a healthy weight and height. They wrote it off as “difficult phases” and assumed that the problem resided at home. They asked us to wait a year or two before we considered whether the chaos, aggression, and emotional stress weren’t just tricks before our eyes. Our illness was invisible, because we were not “that bad off”.

kankurette at The Hidden Village of Aspergers: Happy Mental Health Day. If “happy” is an appropriate adjective

I’d always been a melancholy kid. Think Marvin, Eeyore, Cassandra, the Ides of March. I just went along with it. In my teenage years, I had moments where I was suicidal, and I started self-harming at 14, but I just put it down to teenage angst. Depression wasn’t an illess, I believed. It couldn’t happen to me. Even though my mum turned into a wreck after my dad died and spent days in bed, even though she had panic attacks in front of us and seemed to be more temperamental and headachey than usual, even though the doctor gave her pills to take, I just thought she was sad; I didn’t realise she was ill.

K__ at Feminists with FSD: Interesting posts, some time in October

I have a feeling we’re probably going to see another spike in coverage about Flibanserin, (I’m thinking certain feminist websites are more likely to cover it than others, and maybe some op-ed pieces in mainstream newspapers, as well as others) and when we do see it, I can guarantee you it’s going to get real ugly, real fast. Everyone, get your bingo boards ready to go if you’ll be doing any reading on the matter. If you see any new and bizarre arguments about FSD and why no woman, anywhere, ever, needs medication for sexual desire problems ever, in comment sections to the inevitable anti-Flibanserin posts, let me know; we may have to produce a version 2.0 if we keep running into the same old shit again and again.

Lisa at Sociological Images: What is Intelligence?

We often think that intelligence is somehow “innate,” as if we are born with a certain IQ that is more or less inflexible.  These scores suggest, however, that our potential for abstract thought, though it may be located in the biological matter of the brain, is actually quite malleable.

(Note: For a further discussion of the concept of “intelligence” and its history, see kaninchenzero’s AWP post on Intelligence.)

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: Help, My Friend Is A Bigot!

‘Friend or Foe’ is perhaps one of the most deliciously odd advice columns I read; the basic premise is that people having sticky questions with interpersonal relationships write in for advice. As the name of the column implies, it tends to be pretty blunt with the advice and the dividing people into one of two categories. Recently, a column ran from a reader asking what to do about terminating a friendship with a bigoted ‘friend’ (note: The column discusses suicide, depression, and mental health):

Dear Friend or Foe,

My friend “Rhonda” has always been a bit of a bigot, sneering in an offhand way at Muslims, Christians, Jews, gays, Americans, French people, Spanish people, doctors—really, nobody gets off. At the beginning of our 10-year friendship, this bothered me a lot. But I learned to ignore it, as the comments were infrequent and because she has many other fine qualities. Recently, we were talking about a public figure who struggled with depression and eventually killed himself. And Rhonda said how “stupid” the man had been to trust his doctors and the medication they gave him and questioned how such a “genius” could do such a thing. It really bothered me.

I’ve had my own problems with depression—I grew up in an abusive, violent home—but with the help of a great therapist and medication my life is turning around. I told Rhonda how hurtful her words were and how they reinforced the stigma associated with mental health care. “We’re not talking about you,” said Rhonda. “[The public figure] was a genius and should have known better.” I felt like slapping her. She started crying and accused me of not wanting to be her friend anymore. After protesting for a while, I said, “You’re right, I think it’s best if we don’t speak.” We haven’t spoken since.

Frankly, I’m relieved, as well as happy to be free of Rhonda’s “opinions.” Rhonda was also domineering and critical about what I wore and ate and what music I listened to. However, I do feel a modicum of guilt. Other friends have suggested I was too harsh. Rhonda is professionally successful, but her personal life has turned messy. She recently separated from her husband and began an affair with a married student. Plus, the economy has hurt her business. Was I too harsh in cutting her off?

Sincerely,
Apparently Not a Genius

I confess, this letter kind of puzzled me. Generally speaking, when people toss off hateful and bigoted comments around me, I don’t make a point of befriending them, let alone staying friends for 10 years. As many ‘fine qualities’ as someone has, it’s hard to overlook them if the person is constantly trashing on entire groups of people. Or even not so constantly. My tolerance threshold for that sort of thing is very, very low. The inclusion of random personal details at the end of a letter is a nice touch, too; like, how is it really relevant that Rhonda separated from her husband?

What’s interesting about this letter is that the turning point for the letter writer was when the bigotry started to directly reference the letter writer’s life and experiences, and I think that’s a pattern you’ll see generally in the world. People are reluctant to take action to cut bigots out of their lives ‘really, she’s ok except for the whole hating Black people thing,’ as long as the bigotry doesn’t personally hurt them. Then, suddenly, it’s a problem. In this case, after years of not piping up when the friend said nasty things about people, the letter writer decided that, perhaps, it was time to fight back when a bigoted comment about mental illness was made.

Was the letter writer too harsh in cutting the friend off? Friend or Foe says no:

Dear ANAG,

Whether or not Rhonda is having a hard time, you answer your own question by admitting that you feel relieved to be done with her. The basis of friendship is companionship. If you don’t enjoy spending time with the woman—and find her bossy and obnoxious—there’s no good reason why you should try to make up. Whether or not her comments are offensive and deserving of excommunication is another matter. You don’t cite specific comments she’s made about the various named religious and ethnic groups—I admit I’m curious as the bent of her anti-French smear (“you know those frogs and their love of wine and cheese”?)—but the fact that you’ve even noticed a pattern here sets off certain alarms.

As for the cited dig at docs, it sounds as if you’re oversensitive on the topic—if for good reason. I’m glad to hear that you’ve had such a positive experience in therapy and with pharmaceuticals. But it sounds as if Rhonda might have a complicated history here as well. Why else would she be blaming a stranger’s suicide on his doctors, as opposed to his depression? In any case, given the mess she’s currently making of her personal life, this might be the time for her to find out more about the mental-health profession for herself. I’d leave it to someone else to make the referral, however.

Sincerely,
Friend or Foe

I agree that the letter writer wasn’t too harsh, but for different reasons. Personally, I think there’s nothing ‘harsh’ about telling bigots they don’t have a place in my life, and I’m perfectly happy to tell them exactly why, too. The only question I’d have for the letter writer is why the bigotry didn’t matter until suddenly it was personal. I don’t think anyone is obliged to stay friends with people who are ‘nice, but bigoted,’ or ‘nice, but kinda judgmental and bossy.’

Given how we’re all trained to make nicey nicey with people, it’s not surprising that the letter writer felt guilt and wrote in to ask for reassurance, but didn’t really get it here. Sure, it was suggested that the writer shouldn’t feel too badly about not wanting the companionship of someone uncompanionable, but why not just go ahead and say ‘yes, it’s ok to stop being friends with someone on the grounds of bigotry?’

And what’s with the ‘oversensitive’ comment and armchair psychology. Really, Friend or Foe? Just had to throw that in there? A ‘messy’ personal life is evidence of a Dark Past, and there are absolutely no contributing social attitudes behind the comments made about depression, ‘intelligence,’ and the medical profession?

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

Recommended Reading for Wednesday, September 29

Insomnia Anna says: “Yawn”

Raising My Boychick: On The Ubiquitous Use of “Crazy”

Now you’re just being melodramatic. Don’t you have bigger things to worry about?

Sure. I have mental health disparity because of racism and other bigotries, and exorbitant prices of prescription drugs, and insurance that won’t cover the medicines that work for me, and mental health wards closing, and overcrowding and dehumanizing protocols in the ones still open, and cops shooting people they know are unwell, and mental health used as an excuse to take away our kids, and a lack of effective treatments, and a terrifying mortality rate that people treat as a dishonoring failure in morality. I got lots of bigger stuff to worry about.

Where’s the Benefit: No Wonder People Think We’re All Scroungers

The coalition government’s attack on disabled people isn’t limited to reassessing benefits or encouraging members of the public to shop “scroungers”. Something rather more terrifying is going on: the government and associated entities are repeatedly, and persistently, describing Disability Living Allowance as an out-of-work benefit – which helps convince the general public that it’s a waste of “their” hard-earned tax.

As I wrote in this piece for Guardian Comment is Free, the government’s State of the Nation report offers a woefully misleading representation of the nature and purpose of DLA. “There is a high degree of persistence among claimants of many low-income and out-of-work benefits”, it says. “For example … around 2.2 million people, including 1.1 million people of working age, have been claiming disability living allowance for over five years”.

New Muslim Comic Book Superhero on the Way [Comments are horrible]

The new superhero is the brainchild of a group of disabled young Americans and Syrians who were brought together last month in Damascus by the Open Hands Intiative, a non-profit organization founded by U.S. philanthropist and businessman Jay T. Snyder.
The superhero’s appearance hasn’t been finalized, but an early sketch shows a Muslim boy who lost his legs in a landmine accident and later becomes the Silver Scorpion after discovering he has the power to control metal with his mind.

Astrid’s Journal: Autism, Intellectual Disability, and the concept of Primary Disability

The other point I have huge disagreements with, is the excusing of the lack of attention for intellectually disabled autistics from autistic advocacy groups. This excusing comes from the reasoning that these groups are concerned with autism, not intellectual disability, but you cannot specialize multiple disabilities away. In my opinion, autistic advocacy groups should be concerned with all autistics, including those with multiple or severe disabilities.

Disability Now interview with Dan Daw of Restless Dance Company in Australia: Dancing Dan: The Wizard from Oz

What’s the best thing about being disabled?
Watching people’s faces as the cogs turn when I use the words “dance” and “disability” in the same sentence – priceless!

What funny things get said about your impairment?
My favourite is at airports when the metal detectors beep and they presumptively say, “Oh, you’ve got a metal hip”. “No”, I reply, “I’m wearing a belt”.

Marissa at This is Hysteria: Go Where? Gender, Ability, Intersectionality and Constructivism Please note this is an image-heavy post, and the disability-specific stuff starts about halfway down.

This flawed way of understanding identity – each deviation from the default seen as a discrete layer – is reflected in the washroom signs indicating wheelchair access. Often, there is a male figure, a female figure, and a third non-gendered figure in a wheelchair. Disability is depicted as a discrete aspect of identity, to be layered on top of gender.

Simon Darcy at Accessible Tourism Research: Inherent Complexity: Accessible Accommodation Room Components

Most research had identified the generalities of accessible accommodation requirements without having any specific empirical approach to understanding the needs from a mobility, vision, hearing and cognitive perspective. Each individual has their own access discourse where they value the relative importance of certain room components based on their individual access needs (e.g. many wheelchair users require a roll in shower & hand held shower hose Photo 1). While the overall building codes and access standards identify a myriad of components, the individual only understands at least complex technical documents from what they require in an accessible room (Australian Building Codes Board, 1990; Standards Australia, 1992, 2001, 2002). On the other hand, the accommodation manager manly as a understanding that their establishment has a “disabled room” that people with disability should be other stay in. Hence, once an individual hears that establishment has an accessible room they believe that it will meet their needs (Darcy, 2010).

In The News:

Canada: Dead Veteran’s Last Battle Was for Disability Cheque. “On Feb. 27, he died at the age of 93 in Barrie, Ont. Three weeks later, the $55,000 disability cheque he had been expecting arrived, becoming part of the assets in his small estate. That is, until officials with Veterans Affairs Canada ordered the money seized. Quick may have qualified for a disability but now that he was dead the government wanted its money back.”

UK: MSP Drops disabled clause from assisted suicide bill “Bill Scott, Policy Officer at the campaign group Inclusion Scotland, welcomed the decision, saying: ‘That clause was dangerous, particularly at a time of cutbacks, to say to people you can’t live independently but you can apply for state-assisted suicide as if it’s a way out.'”

Australia: Disabilities ‘forgotten’: opposition “Senator Fifield said more needed to be done to help people with disabilities because neither Labor nor the coalition had “covered themselves in glory” on the issue.”