Tag Archives: self-acceptance

Guest Post: Negotiating Disableism

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This is a guest from from Renee of Womanist Musings.

Disableism is very new to me. My chronic illnesses not only changed my status, but forced me to see just how pervasive ableism is. It has been a huge learning process, as I have sought to reduce the ways in which my language and behaviour support ableism. I have a physical disability which has caused me to more aware of the ways in which society is structured to benefit those that are able bodied, but it has not helped me to understand the ways in which those that are neurologically atypical face discrimination. Common phrases that I used to utter like bat shit crazy, must be erased from my vocabulary. I have struggled not to say that someone is blind to something, rather that pointing out that they are unable to see or understand.

What I have learned is that ridding oneself of disableism, is a process that is not easy but so very necessary. Each time I am reduced by the assumption of another, it causes me to examine the ways in which my language or behaviour support this. It took time to understand that though I am disabled, I still exist with privilege in certain areas. I can hear, I can see, I can get up and walk if I have to, I have all of my limbs, and people do not dismiss what I am saying because they deem me non-sensical due to being neurologically atypical. As long as they are not referring to my specific disability, many are quite comfortable displaying their disabliesm, as though it does not effect me.

I have sat and listened to the complaints regarding the accommodations that those who are disabled must have to participate in society. While most will not scream and carry on about a ramp, even a small thing, like getting more time to hand in a paper at school, is enough to cause a rant about favouritism and unfair standards. Disableism occurs when people feel as though they cannot take advantage of their able bodied privileges. It occurs when people resist that a task can be completed differently to allow a greater participation.

This weekend, on the way to Destructions hockey game, I ran into an old friend. She had not seen me since I contracted my illnesses but her first comment was that she had to get herself a scooter. To her it seemed a cool toy, while to me it is a reflection of all the things I cannot do. There is a man in my neighbourhood who uses a manual wheelchair and he has commented on more than one occasion, that he wished he had a motorized scooter to get around in. Though I am hurt by the ableist comments of a former friend, my class privilege is part of what allowed that pain. When I needed a scooter to facilitate my activities, we were able to afford one.

Though I am differently abled, I am barely at the 101 level. I went through anger, denial and finally acceptance but negotiating this life is something I must begin again like a newborn babe. I have isolated myself because I viewed my body as the great betrayer, refusing to see the ways in which I could and can still participate. When someone is racist against me, it is easy to find my voice because this is something that I have lived with all of my life, whereas; disableism, even when clearly directed at me, brings about silence and sense of shame. For now I count on the unhusband to speak when I cannot and this again is a marker of how blessed I really am. Even in times of weakness and sorrow, I can count on my family to do the heavy lifting. When I need comfort, each one of them is quick to run to my aid. They may not understand what I am feeling but my pain is enough for them to intervene or try to comfort.

I have learned that disableism cannot be reduced to a simple Black/White binary. Even as I struggle against it, I perpetuate it. Just as we understand that society is inherently racist, classist, or sexist, it is also highly ableist. If this were not an absolute truth, the various barriers that block or limit participation would not exist. My task is to now unlearn that which I have accepted as truth. For me it becomes difficult when I begin to look beyond the limited experiences I have had as a differently abled person. There are issues of race, class, gender and even differing abilities to contend with. This task would not be so difficult today, had I made a conscious decision to acknowledge my various privileges in the past. I allowed my privilege to dictate what I learned and studied, thereby reinforcing the very hierarchies that I claimed to struggle against. Today I understand is that there is no universal experience and it is this very rainbow of difference that I must commit myself to embracing.

You don’t have to be normal.

bodies, identity, normality, , , ,

(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. 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.]

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.

Conceptualizing disability

bodies, normality, Uncategorized, , , , , , , , , , , , , ,

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 below[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!

]

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.

Why can’t disorder be beautiful?

class issues, feminism, introspective, , , , , , ,

The mess in my apartment never goes away. We get this room clean, and that room clean, and the other, but rarely all at the same time. Even when we push to get everything in order, there is always something neglected — usually my mess in the second bedroom where I keep all my art supplies, strewn about, which I always promise to myself to organize but never get around to doing.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?