Tag Archives: normality

Recommended Reading for Monday, December 6, 2010

Today is December 6th, which in Canada is the anniversary of the Montreal Massacre [link opens with sound, CBC]. I wrote about it last year. It’s been a very long year. There are things I said then that I might not say now, but I do wonder, always, about a memorial for our dead.

A Bookish Beemer: Seizures in the News

This also implies that if you do something “bad” then you must be “mad.” It implies that no good, normal person could or would ever do bad or terrible things—so if one could prove one was normal, then they could not possibly be guilty of any crime or wrongdoing. The wolf in sheep’s clothing, if you will, feeds and benefits off this idea.

This line of thinking is intellectually lazy, it is bigoted, and it has dire consequences for society.

K at Feminists with Sexual Dysfunction: Compare & Contrast

Today I’d like to present to you a different kind of feminist response to sexual dysfunction – a response from another woman who is intimately familiar with gender studies, feminism… and vaginismus.

As I noted in the New View book review post, I felt like some elements were missing from the essays – notably, it remains unclear to me whether any of the contributors to the original manifesto or the book actually know what it’s like to live with sexual dysfunction – to be torn between what you “Know” is the “right and proper” feminist response to sexual dysfunction vs. the daily grind of living with and responding to it, sometimes just managing

Little Lambs Eat Ivy: Abby…. normal?

We were talking about the average person’s emotional highs and lows. Think of a piece of string that’s not quite taut. There are a few dips and bumps, but it’s relatively straight. Now try mapping the emotions of a bipolar person, and you’ll see a broken rubber band. The lows are lower, the highs are higher, and it’s entirely possible that something might snap.

My hospitalization came as quite a surprise to many people in my life. “I had no idea things were that bad,” my therapist told me. I almost laughed. I had no idea either. I thought I was normal.

Geimurinn:Facades

The Zyfron system is working on a Facades project, a project about the facades multiple systems have to put up to be safe in this world. I think this is a really good project, and any multiple system who hasn’t heard of it should check it out and any singlet should read it to get an idea of what damage multiphobia does to us.

Dog’s Eye View: Blog Carnival Announcements!!!

I am honored to be your host for the Second Assistance Dog Blog Carnival, which will be happening in January. And as your host, it is my privilege to choose and announce the theme for this Second Assistance Dog Blog Carnival: Decisions

Recommended Reading for November 16, 2010

Peggy Orenstein for the New York Times Magazine: The code-words of breast cancer awareness

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

Ally at Every Crooked Step Forward: Where I Write About (Not) Coming Out

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

Lisa at Sociological Images: Illustrating a “Normal” Life Course

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives.   Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Wheelchair Dancer at cripwheels: Broken

Regardless of the state of Tommy’s mind and body, it is we who are broken.  It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression.  It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip.  We are the ones who both stare and look away.  Homelessness doesn’t respond to swelling music and huge parades.  PTSD isn’t best treated by ignoring it.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: NAMI (National Alliance on Mental Illness)

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

David Gorski at Science-Based Medicine: Homeopathy for fibromyalgia: The Huffington Post bombs again

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

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 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.

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Recommended Reading for July 13, 2010

Problem Chylde at Feministe: Storytelling as a Radical Act

They won’t speak out for fear of losing something: losing a relative, losing control of their lives, or losing their stories. To them, it’s not a myth that their stories will be repeated without their names to guide them. Anyone can pick up a textbook and read case studies about H, a 26-year-old African-American woman from X with cerebral palsy, or see pictures of happy smiling children online referred to as “happy smiling children in the Y mountains/Z desert/Q farmland.” These people — their bodies, their plight, their stories — are Other. No names in the street, in the book, in the mind, and people only recently have been asking why they are nameless.

Jeannine Stein, Los Angeles Times: Movement therapies may reduce chronic pain

Movement-based therapies such as yoga, tai chi, qigong and more mainstream forms of exercise are gaining acceptance in the world of chronic pain management. Many pain clinics and integrative medicine centers now offer movement-based therapy for pain caused by cancer and cancer treatments, rheumatoid arthritis, fibromyalgia, multiple sclerosis, and other diseases and conditions.

lisa at Sociological Images: Norms, Normality and Normativity

Sociologists distinguish between the terms “norm,” “normal,” and “normative.”

The norm refers to what is common or frequent.  For example, for Christian Americans, celebrating Christmas is the norm.

Normal is opposed to abnormal.  Even though celebrating Christmas is the norm, it is not abnormal to celebrate Hanukkah.  To celebrate Hanukkah is perfectly normal.

In contrast to both of these, normative refers to a morally-endorsed ideal. . .

Wheelchair Dancer: Equivalencies:Days 2 and 3

We use equivalent to suggest that two separate and often very different things are the same, or, at least, of equal value. But the very insistence on equivalence underscores the potential for the thing that is being compared to be somehow less than the original. Rather than “same but different,” it’s more “different but same.” My mind jumps to “separate but equal.”

Recommended Reading for April 13, 2010

Renee Martin: I’m not a Feminist (and there is no but)

Blogs run by traditionally marginalised women do not attract the same attention by the media. When feminists are pulled from the internet for interviews, it is routinely the same white feminist voices representing the broad perspectives that are visible on the internet.

Flora: Guest Post – Heteronormativity and FSD

The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.

evilpuppy at Livejournal: “I Have Always Depended on the Kindness of Strangers”

The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.”

Ally: Those are These, and These are…Me

I am one of Those People. I have friends who are Those People. That World, that you seem so quick to reassure me I am not part of? The world where every statement begins with a negative prefix, a non, dis, lacking-in, etc? That world of people who need things done for them, of people who take too long to do anything on their own, and get in everybody’s way, and can’t help but be inept, no one’s blaming them, but god, do we have to humor them? I am part of that world. When you talk about Those People, you are talking about me.

Maria L. La Ganga (Los Angeles Times): Severely disabled, is she still a mom? Battle nears over visitation rights of a woman injured in childbirth [trigger warning for very graphic descriptions of medical trauma]

Abbie’s parents have been named conservators of her estate, which includes a multimillion-dollar malpractice settlement, and are asking a Los Angeles County Superior Court judge to order Dan to let Abbie see her children. Dan has refused all requests, arguing that visitation would be too traumatic at their young age.

Finding Myself in Unexpected Places

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

You don’t have to be normal.

(Originally posted April 2008 in two parts at three rivers fog.)

this is new to me. this idea that i should love my body. not hate it.

it’s funny, because i was about to say “this isn’t a post about body image.” but it is, isn’t it?

let’s cut to the point. i’m not talking about beauty standards.

i’m talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn’t work like your body.

but that doesn’t make it bad.

this is hard to grasp. i don’t like this idea.

but maybe it’s better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn’t make me Less Than. that doesn’t even make me different — or it shouldn’t, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can’t even see myself as just being – it’s always how different i am from the “normal” “healthy” body.

you know what, dammit, my body is “healthy.” my body is damn well fucking “normal” for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn’t allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn’t let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn’t have such a hard fucking time learning how to work with my body if my culture hadn’t taught me to expect to be The Norm. if my culture hadn’t taught me that if you look like you’re fully-abled, then you must be. if my culture hadn’t taught me that if it doesn’t show up in the bloodwork or the ultrasound then it doesn’t exist. if my culture hadn’t taught me that my pain is simply pathology. if my culture hadn’t taught me about welfare queens and “milking the system.” if my culture hadn’t taught me that disability is both scary and pathetic.

…maybe i just need to understand that this is how my body works and damn it all, there shouldn’t be anything wrong with that — the fact that there is anything “wrong” is a sign of a fucked up culture — not of a fucked up body.

***

…the person who believes ‘I will be real when I am normal’ will always be almost a person, but will never make it all the way.

Eugene Marcos (via, via)

We have been told all our lives that to be accepted, to be successful, to be a whole person, we have to be “normal.”

And so we strive to change ourselves such that we resemble normalcy.

But it is a rare bird that can adapt itself to living in the water — or fish that can adapt itself to fly.1

Respect your body and your mind. They operate how they operate, and there is no need to change that, not for anyone’s sake. It is not a deficiency. It does not make you lesser. It is not deviancy. It is what you are, and it is good for you.

People on the outside will be uncomfortable with the implications of such a weird and different body (mind) being a good thing, because we have all been indoctrinated into the cult of dominance, where what dominates is Good and Right, and anything that is not the same is Bad and Wrong. It manifests itself in so many different ways even for the same differences. But that is the root of it.

To outsiders, the idea that what you are is definitionally good, because it is good for you, a different person, is disturbing. To outsiders, it says that then, what they are must be bad. And those who think that way will therefore reject you as a person, differences and all.

But there is a different way. There is a way built, fundamentally, on respect. On allowing one another to be what we are, and finding joy in what results. On knowing that when a person falters trying to live in this society, it should not be chalked up to the fact that they are different, but to the fact that society has failed to plan for anything but the dominant, and will then fail in trying to accommodate anything else.

It rests on, again, seeing a person and thinking not: burden, but: potential.

On seeing that person, and recognizing them as a person.

We should all be prepared to accommodate differences, even when it means a change or an extra effort. We should be prepared for this, because we expect as much already from those we are failing to accommodate. We already expect them to change their very being to be able to accommodate how we operate. So we should not protest when we are called upon to open our minds, to change how we think, to change what we do. After all, at least we are not being asked to change what we are.

  1. I hesitated with this metaphor. I was afraid of the implications. The usual stuff, that pwd are of an entirely different species, that pwd are animals, that pwd are at base un-understandable and therefore nobody should even try. (”We are nearer still when we know we don’t have to understand somebody to know he is real.”) But at the same time, I don’t want to shy away from the implication that we are not all the same. That is what we are pushing to accept. Everyone approaches the world in hir own way, and that is ok, and we don’t all have to come from the same place to be able to travel together.

Conceptualizing disability

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

[aut_concept_chart.png]AnneC’s chart: Conceptualizing Autism, transcribed below1

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

  1. The chart reads in three columns, transcribed here:

    * Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
    * Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
    * Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

    * Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
    * Cognitive & Perceptual Style: What characterizes the experience of being Autistic
    * Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

    * Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
    * Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
    * Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

Pain and Public Spaces

The singer Martha Wainwright has a song entitled “Bleeding All Over You” that begins with the following set of lyrics:

There are days
when the cage doesn’t
seem to open very wide at all

I know it sounds negative, but some days, I can definitely relate. Maybe it’s the fact that I pass fairly regularly as able-bodied–at least in public spaces–or maybe it’s my failure at passing on my worst days that makes me relate. As much as I hate to rely upon the old trope of the person-with-disability as trapped by her own unruly body, it, like many tropes, has a sliver of truth to it.

When I am in public, I often fear that other people–more able-bodied people–can “spot” my disability. On a purely surface level, this makes no sense. Part of what makes passing such an interesting topic is the fact that, on some level, the individual who passes can hide something and look as if she or he is a part of another group, despite some (invisible) evidence that would suggest otherwise. I realize also that not everyone has the ability to pass–that passing, in itself, is a privilege. The ability to appear to be something that one is not (often as a member of a more privileged group) is not something that absolutely everyone has.

Today, I sat in a restaurant and ate a light lunch very, very slowly because my right hand was unable to hold the fork without considerable muscle pain in my tendons and wrist. This sort of thing happens rarely, but when it does, I get nervous. I become nervous because I think that my fellow diners, or students, or whomever, can pick up on my not-immediately-obvious physical difference(s) from something that is only slightly “off.” Even using a term like “off” is problematic; it implies that there is something wrong, that the person who needs to take time to do some of the things that others may take for granted needs to be fixed, somehow; that, or she needs to “fix” herself (by minimizing/masking her pain or ability or dis-ability) so that she may fit in and continue to pass.

So, are my restrained grimaces due to pain–when I am in public spaces, that is– restrained because I, deep down, want to continue passing? Is it because I would be embarrassed to show my pain around strangers? Is it out of rather ridiculous consideration(s) of the “comfort” level of strangers (ie: the social assumption that one should never make people uncomfortable, even if one is in pain)? Does a “stiff upper lip,” so to speak, actually do anyone a favor? I’d argue that the whole “keep your pain to yourself” thing might arise from a very deep fear of individuals with disabilities, but that’s probably best saved for another post.

Originally posted at Ham.Blog