Monthly Archives: October 2010

Guest Post: Matchstick Girl

Amy Gravino is a certified college coach for individuals with Asperger’s Syndrome, and is diagnosed as having AS herself. She is currently attending graduate school at Caldwell College in Caldwell, NJ, where she is working to obtain her Masters degree in Applied Behavior Analysis. Amy is also authoring the book, “The Naughty Autie,” which chronicles her experiences with dating, relationships, and sexuality as a woman on the autism spectrum. (For more information, please visit www.amygravino.com.)

Editor’s Content Note: This post discusses being locked in a closet, and may trigger a claustrophobic reaction.

It all starts with a doorknob.

The palm of my hand wraps around cool metal. Smooth and solid against my skin, gaining me entrance to my place of peace. I can hear the other children’s voices somewhere distant, far away on the Big Toy. They play outside, running over hot blacktop, skin freckling in the sun.  But I am in here, in the dark.

I move into the closet slowly, acutely aware of my Velcroed sneakers touching the tiled floor, one step at a time.  The shoes are too tight, and my feet are throbbing and cramped. They’re trapped, along with the rest of me.  My muscles are tense and twisted in preparation for the onslaught of adolescence soon to come.  I’m in the middle of the closet now, standing right below the light bulb. Without hesitation, I sink to the floor and arrange myself in a cross-legged position.  I have no concept or inkling that any of what I am doing is not normal.  I don’t even think that anyone notices me retreating in here day after day. I’m a matchstick girl—legs spindly and awkward, all too sensitive, waiting to be set alight by the outside world.

I try to breathe, for what seems like the first time all day. Tiny hisses of air pass through my clenched teeth, which are aching behind omnipresent metal braces. I can feel the blood rushing through my gums to the enamel, and back again.  So much awareness, and yet it is this same awareness that fails me when I try to interact with my peers.

Thoughts of past and present social failings dart through my mind, each delivering a momentary but painful sting: a student’s science project in Mrs. St. Pierre’s classroom two years ago.  A flood of red, followed by a loud rumble and a hiss from a homemade volcano sends me running out of the room screaming.  Gym class two days earlier: a silent mantra—I will hit the ball this time, I will hit the ball this time. And I did—with my face, courtesy of an intentionally too-hard lob from the other side of the net.  Home Economics, one year ago. Untrained hands move clumsily, twitching from the sewing machine’s vibrations.  I’m bent too far over, and it’s only seconds later when a mousey brown strip of my Rapunzel-esque hair catches beneath the needle.  My classmates stand nearby, taking in the spectacle, making no move to help me.  While I shriek, they laugh.

The emotions that poured out of me in each of these situations come back to me now, as powerful as they were when I first felt them.  I become so lost in my anything-but-pleasant reverie that I do not notice the closet door slowly shutting behind me.  The sudden click of the lock jolts me upright.

“Haha, you’re locked in the closet!” one voice jeers.

“You’re not allowed to come out!” another joins in.

Two girls. Ella Ringway and Kelly Rockpoint. I recognize them immediately. Why are they doing this? What did I do wrong? I grab the doorknob and it turns, but the door won’t open. A swell of panic rises in my chest.

“Please, let me out! Please!” I cry.  But the taunting continues.  With all the might my miniscule form can muster, I push against the door, but their backs are up against it on the other side, and I feel the weight of their bodies countering my efforts.

“Come on, you guys! Let me out of here!” I again implore. But they ignore me, and I can hear them laughing at my expense. My safe haven is now a prison, and I cannot escape.

Eventually, Mrs. Plotz, the math teacher whose closet I am trapped in, arrives, and sets me free, shooing Ella and Kelly to their desks so that class can begin. I emerge from the closet as slowly as I went into it, nerves destroyed and heart scarred from my ordeal. My sadness and anger are barely concealed as I find myself forced to complete long-division problems with my former captors.

You call this justice? Does the Geneva Convention mean nothing to you people? I wonder while fuming silently.

But this was middle school, and there was no justice to be found. Not for anyone, but especially not for me. This continued all through high school, unrelenting, unending. I was, I thought, trapped in an invisible closet, one of my own making, unable to connect to anyone or anything. It is only years later that I now see how they were the ones truly in the dark.

This precise memory—of the closet, of being locked in by my peers—has not passed through the fore of my mind in a long time.  It had no reason to until last year, when I received a message on Myspace from Ella herself. I was surprised more than anything else, and did not know what to expect when I started to read it.  What could she possibly have to say to me? We had neither seen nor spoken to each other since graduation, and I couldn’t imagine why she would have a need to write to me.  It was only after I’d read the entire message that I realized she had apologized for how she’d treated me. She said she wished she’d known more about Asperger’s syndrome at the time, and that maybe if she had, she would have acted differently.  But the would-haves and could-haves meant nothing to me.  What did mean something was that, out of all the people who’d tormented me back then, Ella was the only one who had the courage to come out and apologize for it.

Sometimes I can still feel the closet around me.  The odor of mildew and old math books collecting dust is as strong in my mind now as it was then, but other smells now provoke other memories. They are locked up tight, while I sit in front of the door to keep them from getting out.

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Recommended Reading for October 19, 2010

Corina Becker at No Stereotypes Here: Real Communication Shutdown

I was recently asked by a person on Twitter to participate, and I responded that there wasn’t much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating.

kaz at Kaz’s Scribblings (DW): trials and tribulations — learning foreign languages with speech disorders

in my forays into foreign languages, I have discovered that if I speak slowly and focus on pronunciation I automatically slip into stronger therapy. And I do mean automatically. And, like, I can’t even think “okay, I’m going to talk normally now”, I actually have to intentionally try and modify various sounds to be untherapylike. . .

Katherine Creag at My Fox NY: Woman Couldn’t Buy Inhaler During Asthma Attack

“I had exactly a twenty-dollar bill. It came to twenty-one and change,” Jack Brown said. “I offered him my cell phone, my wallet. I said I live right around the corner. I come in here all the time.”

He was told the inhaler with tax would cost just over $21. He was short a dollar and change.

staticnonsense at Some Assembly Required: Intersections of Disability and Transgenderism

Trans people get othered a lot. We’re pushed off as crazy, disordered, for challenging the social norms of gender and sex. Either by choice in trying to deconstruct this ancient structure, or simply by existing. Throughout history we’ve been institutionalized or “fixed” (or tried to be) simply for existing as ourselves in a world that focuses so strongly on the cissexist concept of penis = man = masculine and vagina = woman = feminine. Even now the disconnect of the body and one’s self identity is seen as a disorder, one that mu

Chally at Feministe: Unreality and the politics of experience

And it’s a bizarre experience because the person in the best position to speak about their own experiences and emotions is the person who has them. And, personally, I find the desire to go over horrible experiences with a fine tooth comb, tease them out, decide – retrospectively, calmly, objectively – on an appropriate response, (an appropriate reaction is whatever I judge to be appropriate, thank you very much) to add a whole new sickening layer to what I experienced. And then there are those demands for more details and irrelevant details and painful details, because whoever is “listening” thinks they get to decide what’s important.

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.

Going Through the Motions

I’ve been in hiding.

I admit it.

I’ve been shoving myself headlong into activities that keep my busy, and exhausted.

Still I always feel
This strange estrangement
Nothing here is real, nothing here is right*

“Wow! Aren’t you Supermom?”

Well, not really. It just keeps me occupied.

Just hoping no one knows
That I’ve been*

But really, I don’t have this kind of energy. To run to all these practices and game and meetings. To keep up with the chores. The volunteer events. To make meals. The group photos for people. Bringing snacks and handing out sports drinks. To pack lunches. The doctor’s appointments.

Going through the motions
Walking through the part

I have drawn it from somewhere. But I don’t always have somewhere from which to draw it. I feel like I have had to, though. Because if I didn’t I would have to think about the things that roll around in my mind.

And I just don’t want to do that.

I was always brave
And kind of righteous
Now I find I’m wavering*

It isn’t a pity party, or a call for anyone to feel sorry for me. I can’t even say it is a moment of clarity where I realize the err of my ways and that I will stop this silliness and start taking better care of myself. It’s a little late for that now that events are in full swing and people are counting on me to keep going somehow.

It’s my coping mechanism… however good or bad it may be. We all have them. Mine may just lead to more crashes, a slightly elevated pain med use (which is still well below my prescribed allowance), and periodic bouts of me crying into my pillow at night because I am too exhausted and in too much pain to sleep.

Will I stay this way forever?
Sleepwalk through my life’s endeavor?*

So I keep going through the motions.

Eventually I have to pay that proverbial piper (that jerk), but it keeps me going, in a sense, for now.

I don’t want to be…

Going through the motions

*“Going Through the Motions”, “From Once More With Feeling”, Buffy the Vampire Slayer, Season 6

Recommended Reading for 18 October 2010

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

The first two links were sent in by Penny at Disability Studies from Temple U! Thanks Penny!

Knitting Clio: Ableism and NARAL Pro-Choice America

via NARAL Pro-Choice America, which is running a pro-choice slogan campaign.  Here are the choices:





I voted for the first one — why?  Because using “insanity” to discredit opponents trivializes persons with mental illness — a group that already experiences social marginalization and oppression.

Media dis&dat: South Carolina woman with Down syndrome volunteers as teacher’s aide in special ed classroom (Extra Special Trigger Warning for description of exploitative labor practices passed off as Very Special Favors done by abled folk)

“She had been working at a fast-food place, but they were really taking advantage of the fact that she was disabled,” Masaki said. “So, I offered her a ‘job’ here.”

Brown’s unpaid job is to be a teacher’s aide in Masaki’s classroom. While the position is voluntary, Brown works like the two full-time paid teacher’s aides, Rita Evans and Wendy Usary. The paid aides help Masaki with the classroom teaching everything from potty training to table manners to play time to desk work.

Brown helps control the children and helps keep the classroom running the three days a week she’s there.

The following post, which made me so angry I really cried because I hate the world sometimes, was sent in by reader Blake:

NYTimes.com: Mentally Ill US Citizen Wrongly Deported (TW, because the title doesn’t even begin to cover how awful this is!)

A mentally disabled U.S. citizen who spoke no Spanish was deported to Mexico with little but a prison jumpsuit after immigration agents manipulated him into signing documents allowing his removal, a lawsuit filed Wednesday alleges. His lawyers say the agents ignored records showing his Social Security number, while prison officials wouldn’t tell concerned relatives what happened.

Health Behavior News Service: Kids With Chronic Illness, Disability More Apt to Be Bullied

The study showed that students who reported having a disability or chronic illness — no matter where they lived — were more likely to be experience bullying from peers than those who did not. For instance, in France, 41 percent of boys with a disability or chronic illness reported undergoing bullying compared with 32 percent of boys without. Gender, however, was not a factor — boys and girls were victims equally often.

In addition, when students with a disability or chronic illness were restricted from participating in school activities, they had a 30 percent additional risk of being bullied.

Garland Grey at Tiger Beatdown: The Problem with Policing Someone Else’s Mental Health

Marginalized people are particularly susceptible to having their emotions pathologized, partly because their experiences aren’t typical. When young queers are experiencing depression related to the stigma of their sexuality, people like Tony Perkins swoop in to point the blame at their sexuality, and not the stigma that they themselves are perpetrating. Women, queers, the disabled, people of color, political dissidents, atheists; all of these groups have a history of being labeled “insane” to control them.

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.

Someone Get This Rock Off Of My Chest…

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication.  Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything  or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

Video Post: Rachel

From the video description: Rachel is a volunteer at Science World in Vancouver. She has applied for a power wheelchair from the Equipment and Assistive Technology Initiative (EATI) to be more independent and effective at her job.

The video shows Rachel, a young white woman in a manual chair, at Science World. She’s shown going around the exhibits, helping out children who are seeing things, confirming the various exhibits are in working order, and checking out the computers around the center.

Caption: Rachel Elizabeth Roberts, Science World Volunteer

Rachel: I was in high school and I was placed here to do a work experience program, and I liked it so much that I decided to come back.

I help out with some stuff in the galleries.

I just do two galleries, “Search” and ‘Treasure”, and just talk to customers. You get to meet a lot of interesting people.

And I also make sure to check things are working properly.

It is difficult. I find I get tired from my upper arms, my arms, but it’s okay, I feel like the power chair will help me get to where I need to be faster, so I don’t waste any time. I just go straight to work.

I think it will help immensely because I get to do other things. There’s a whole world of possibilities that I haven’t even tried that I’m willing to try. Work in OMNI, maybe help the staff with stuff like scheduling and I’ll be more independent and just … just do more things, like… like… go for a walk on the sea wall, or with one of my workers, or just, you know, experience new things.

I’m really excited. I can’t wait to see what the summer has in store now that I have wheels.

Caption: B.C. Personal Supports Network Equipment & Assistive Technology Initiative (EATI)

A film by Angelina L Cantada

Recommended Reading for 15 October, 2010

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

At Deafinitely Girly, Nobody puts Deafinitely Girly in a deaf box:

Sometimes I wonder what I should do about this living in a box thing – should I work with it? Get it some comfy cushions, make myself right at home, play up to the illusion that I’m going nowhere fast. Or should I throw the damn box out of the window and continue the daily fight to prove that putting people in boxes – no matter who they are or what they do – is a very outmoded way of thinking?

At Rolling Around In My Head, A Pop Quiz by Dave Hingsburger:

Clearly there are two ways to view every situation. I am wondering about all of you. Was the curtain a thing designed to give privacy or was it something which indicated the hiding way of shameful movement?

New Zealand: Government Bullying Must Stop by Red at Walking is Overrated:

This bullying of innocent families (who, let’s be honest, have enough on their plate) must stop. The Government is relying on the apathy, relative inertia and fear of the disabled community to make life hell for the people who deserve it least. No other group in society is so reliant on the Government from birth as people like myself who are born with a disability. We must support each other, and band together to tell whoever is behind this vendetta against good, hard-working families who are dedicated to their kids, that enough’s enough.

Singapore: Call for awareness on mental health issues at TODAYonline:

Associate Professor Fatimah Lateef said: “It is also significant that there was another follow-up survey (to the one done in 2004) that showed 37 per cent (of those surveyed) said even if they had serious mental health symptoms, they would not come forward to seek professional help because of the fear of stigma.”

Canada: at The Standard, City of St. Catharines plans for an inclusive election experience:

“We looked at everything from the Facilities Accessibilites Design Standards checklist, the updated building code and for accessibility, said Karen Ellison, the city’s election co-ordinator.

“We’re trying to make this a superior experience.”

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Canadians: Tell Your MP To Vote for C-304

One of the ways I entertain myself on the bus is looking at houses and apartment complexes we pass and deciding whether or not we’d ever be able to live there. “Hmm, that looks like a ramp could be built to the front door.” “Wow, that’s a useless step that could be taken right out. Is that there for decoration?” “Damn, I hope no one in that apartment building ever breaks a leg because that’s never ever going to be accessible to people who can’t climb a flight of stairs.”

Finding housing is one of the main challenges facing people with disabilities and their families. Don and I spent months looking for an apartment building in Halifax that didn’t have “just a tiny flight of stairs”. I’ve talked to people with service animals who have repeatedly struggled with being refused housing for having a “pet”, even though such refusal is illegal. Mia Mingus, Crip Chick and their supporters have been documenting their attempts to find accessible affording housing.

On top of this, finding affordable housing when one or more members of your household have a disability can be incredibly difficult and daunting. Disability is expensive, even with Canada’s patch-work attempts at assisting with the many and varied costs. Assistive technology and its upkeep is costly. Medications are costly. Having in-home assistance is costly. “Special” foods that are necessary if one has any dietary restrictions are costly. Transportation, adapted or otherwise, is costly. These bills add up, and trying to adapt or locate accessible housing on top of it can lead to hopelessness and despair. (Certainly it did when Don and I tried to find accessible affordable housing in Halifax.)

Next Wednesday, October 20th, Canadian Members of Parliament will be voting on the Private Members Bill C-304, “An Act to ensure secure, adequate, accessible and affordable housing for Canadians”.

This Bill has been pretty much off the radar for anyone who isn’t on poverty-rights mailing lists – a search through CBC, for example, finds only two hits, one from 2009 and the other in a 2010 blog entry that mentions it in passing at the end. This isn’t particularly unusual, since Private Members Bills, especially ones supported by opposition parties, don’t really get a lot of attention because they don’t often pass.

At the same time, though, this is the problem. This bill explicitly talks about housing as a right. It explicitly talks about housing for people with disabilities. To quote:

“accessible housing” means housing that is physically adapted to the individuals who are intended to occupy it, including those who are disadvantaged by age, physical or mental disability or medical condition, and those who are victims of a natural disaster.

It is so rare to see any bill in parliament that acknowledges disability, let alone one that actually talks about housing needs. It would be great if we could make some noise, if we could make it clear to our Members of Parliament, our elected representatives, that we as Canadians care about accessible and affordable housing needs, so even if this bill doesn’t pass, the next time the topic comes up our MPs know: This is something that Canadians want addressed.

The people behind Red Tents have planned a National Day of Action in support of Bill C-304 on October 19th. Their main event is in Ottawa, but I know there are other events planned around the country: Halifax’s event is all day Saturday and Sunday, for example, and a quick internet search found events in Winnipeg and Vancouver as well.

I would also recommend contacting your Member of Parliament between now and Wednesday to let them know that you support Bill C-304. Your contact with them doesn’t have to be long – mine was only a few sentences – but let them know that you support accessible affordable housing in Canada, not only for people with disabilities, but other groups that are also included in this Bill. You can find the contact information for your Member of Parliament here, but be aware that, like all Government of Canada websites, this one may not be accessible to screen readers. Another option is to use Make Poverty History’s email form to contact your MP.

For more information:

Here is the text of the Bill, in both English and French.
Open Parliament has all the debate on the Bill in a handy searchable format.
The Council of Canadians with Disabilities has a history of the Bill.
Centre for Equality Rights in Accommodation has details as well.
Red Tent’s details on the Bill.

Recommended Reading for 14 October 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.

Crazy Mermaid’s Blog: Mental Illness Medication Side Effects

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

Diary of a Goldfish (Thanks, Deborah, for sending this in!): Coming Home Undefeated

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don’t have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

Deaf Echo: It Gets Better. It Really Does. (Thanks, codeman38, for the link!)

A few hours later, I received an email from some guy named Terrence, who told me he had just finished captioning the clip. I guess I’m a little slow these days, because I made no connection between Terrence and Terry.

That’s right. Terry, Dan Savage’s husband, took time out of his day to transcribe their video clip, figure out the program, and upload the captions so that gay deaf kids could have access.

Because. It. Is. Just. That. Important.

Penelope Friday: Read About Cost to the Poorest  of the Newest Welfare Reforms (Thanks, Rosemary, for the link!)

And explain patiently to me that if a family is earning £44000 then they don’t need child benefit. Even if it is the father who earns the money, and the  mother who may depend on the child benefit to have any money of her own (which yes, is often the case, even these days). When women have been able to use their years of claiming child benefit to count for contributions to National Insurance, and now will presumably lose that benefit alongside the present money.

Disability Scoop: SNL Offers Apologies For Disability Cracks

After repeatedly mocking New York Gov. David Paterson for being blind, “Saturday Night Live” used the governor’s appearance on the show’s season premiere Saturday to make amends.

During the show’s “Weekend Update” segment, the real Paterson made an appearance to take some jabs at Fred Armisen’s impression of him and set the record straight.

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.

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.