Revelation of the Self: Confronting the Internalized Ableism of my Identity

There are things I have learned about myself, recently. Things that have been true for a very long time, but which it took time for me to process as a part of my identity.

Why does it take so long for me to connect my reality with its implication?

Perhaps it is simply another way in which my brain gets stuck.

But I think there are two other reasons. Both are a kind of internalized prejudice.

One has to do with social norms, with stereotypes and stigmatization and fear and contempt. If these traits are part of my identity, then I am Like Them, and They Are Different and They are Bad and I am Not Like Them.

The other is an internalization of the refusal to respect marginalized people’s self-definition and self determination. If Those People cannot define themselves, and I cannot define myself, then I certainly cannot define myself as One of Them.

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Blogging Against Disablism Day: Do Not Deny Me

Trigger Warning: This post contains a very personal account of my experience with doctors and ableism which could be triggering. It also discusses gas-lighting and experiences similar to it.

Blogging Against Disablism Day, May 1st 2015

Image Description: The above image is a banner for Blogging Against Disablism Day, a 5×4 grid of pictures, in various colors, of the type used to represent people on signs. One has a cane, and one has a wheelchair. The image links to the Blogging Against Disablism Day page.

Recently, I was contacted about Blogging Against Disablism Day. I knew right away that I wanted to participate, but what to write about? Certainly I’ve had personal experiences with disablism, or ableism as it is sometimes called. But what specific type of ableism did I want to talk about? There are so many different ways that ableism presents, the institutionalized and the interpersonal, against the physical, the mental, and the developmental, the visible and the invisible. There is internalized ableism and external ableism. There is fear, pity, disbelief, simple hatred—but what should I talk about? What have my strongest, most memorable experiences been with?

The answer came fairly quickly. Doctors. After all, my experiences with doctors actually seem to have caused some of my disabilities—certainly exacerbated them. Most of my experiences with ableism have been with doctors. For three years, most of my experiences period were with doctors. Once I finished writing this, I realized it wasn’t just doctors, but denial. Denial of my experiences, my voice, my agency.

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I am Hoping: Words Not to Say

“Hope for the best. Prepare for the worst.”

I can’t tell you how many times I’ve heard that.

I think I hate that phrase now.

That seems to be a go-to phrase for people when I try to explain why I am making the plans I am making, why I can’t just pretend that I will magically get better. Sometimes it is an attempt at understanding, sometimes a rebuke because they believe I am not “hoping for the best”. (What, then, am I hoping for? Do you think I want this? Do you think I enjoy the fact that I will be in pain for the rest of my life? Nevermind, you wouldn’t be the first.)

“The best.”

Well there’s one problem. They rarely seem to understand what “the best” is. They think that “the best” is that this will all go away, and I’ll be healthy and normal and I won’t use a cane anymore. They think the “best” I should be hoping for is being fixed.

And I will concede, I suppose, that anything can happen. A cure could be found. They could cure this and every other thing I have and I would be normal and healthy and maybe  happy.

And I don’t know what else.

I don’t know who I’d be, if I didn’t hurt.

I do want to stop hurting, I think. A cure would be…good, I think, at least for this. This particular ailment, which affects my nerves more then my thinking. (I wonder what that would be like? I almost dread the times I do not hurt, because they make me doubt myself. Moments of happiness in between bouts of pain are some of the worst moments I have.) But everything in my body is tied to everything else, and all of it comes back to my brain, and who would I be with a different brain?

But that’s all academic. Hypothetical philosophies that are generally irrelevant to my reality.

There isn’t a cure.

And this isn’t going away.

So what is the “best” that I hope for?

I want…

I want so many things. I do not hope for all of them.

I hope…

I hope that I learn how to live with this.

I hope that I get used to walking with my cane, because it frustrates me and angers me when it bangs my leg getting into the car, and I forget to bring it with me, but now that I am using it I can actually walk and I do not fall, I stand steadily on my feet and my legs do not disappear from under me and do you know what that is like, after two decades of feeling my ankles give way and my knees drop out?

I hope that I stop crying every day. I hope that I keep feeling things, though.

I hope that I learn to be content. If I learn to be content then I can be happy, I think.

I hope that I get to be happy. Not the happiness that comes in between the pain, when it leaves me for a little. That happiness is tainted with fear and hatred and self-doubt. Because I know it will not stay. Because I fear my mind is lying to me. Because I hate the people who made me afraid of that, and the people who made me hate myself, and I hate that I listened and I hate myself for not beating them.

No. No, not that happiness.

I hope that I get to be happy regardless of my pain, not because it is gone.

I hope that I learn what I am learning, to be happy with the things I have to be happy with, to be proud of the things I have to be proud of.

I hope I learn to live with this. That is what I hope.

That is the best that I hope for.

And I do hope for it. You do not need to tell me to hope for it, because I do, I do. You think because I am angry and in pain and grieving that I do not hope? Are you dissatisfied because my hope does not look like you want it to, placid smiles and inspiring strength? Am I not being strong enough for you?

I am so tired of being strong.

I am so tired of trying to hope.

I am so tired.

I have the rest of my life to hope. The rest of my life to try to be strong. This is mine to live with for the rest of my life, and not yours, and I do not want to hear that I am not hiding it well enough for you.

I am grieving. Let me grieve.

I Have Always Been Afraid

It was only recently that I realized
That I’ve always been afraid,
Or anyway I can’t remember when it started,
when I first asked “why do they hate us”, “or why did we come here”, or “when will it happen again?”
And so I can only assume that I have always been afraid,
Or at least since I was old enough that fear meant more than crying out
For my mother’s breast.
 
I remember the first time I asked what the old Torah in glass case near the entry to the temple was, and why we didn’t take it out all the time like the others.
Why only the Rabbi carried it, ever so carefully, when he and the old woman rounded the sanctuary
Once a year.
I remember asking, and I remember my father answering
And I remember that I must have been very small, because I cannot remember how old I was.
And I remember that when he said it was from the Holocaust, I knew what he was talking about.
 
I remember what must have been the first time I ever sat through a lesson on the Holocaust in public school,
Fourth grade, surrounded by goyim.
I don’t remember when I learned the word goyim. If it was before then, or after.
But I remember that in that moment, in that hour, on that day,
I understood what that word meant.
I understood then better than I had before:
There were us and them,
And the them would never understand what it was like to be us,
And they didn’t care to.
That between the way that I saw the world
And the way that they did
Was an ocean of tears,
And far more than six million dead ancestors.
 
(I would realize later that it was more complicated
Than us and them
But all the goyim I knew then were white.)
 
I remember learning what happened here,
In America,
Not a decade after the Shoah was done.
I remember learning what happened before, and I remember talking
About what happened now.
I remember hearing my rabbi’s stories
Of when he was a child.
But I also remember
That I already knew.
 
When did I first realize why my grandmother came here?
There’s a film on our shelf that tells the story
With mice instead of people, to make for more palatable consumption.
But what was on that tape was never a lesson.
Never really history, either.
Just life.
 
I remember finding out what year we left,
And which part of Russia we had been in.
I remember finding out how close I came
To never
Existing
At all.
But by then I had known for all my life
Why we came here.
 
When did I first wonder when it would happen again?
When did I first know that I was hated?
Not the understanding
That still comes everyday in waves and stabs,
Every time that I am reminded how lucky I am
To have gotten off light.
How lucky I am
That I was never searched for horns,
Or locked in a bathroom,
That coins were never thrown at me in the hallways.
How lucky I am
That I am alive.
When did I first know that I was hated?
When did I first know
The sky was blue?
Before I had words or names for it,
When all I had was the color
And the sky.
 
It was only recently I realized
That I have always been afraid.
Another step in realizing that I am Other
From the people I grew up with.
And only recently I realized what that fear means to me,
And how frightened I am
Of losing it.
 
Sometimes the doctors give me drugs
They say that they will make me sleep
Or take my fear away
And I am afraid to take them.
If I am dead to the world on a regemine of sleeping pills
Then what will I do
If they come in the night?
And if they take my fear away
Than what will be left
To keep me safe?

A Reminder to Myself

It is Uncomfortable to say I am white passing.

To identify myself with my oppressors when already, I see them in my mirror,

(I am an olive tree painted white, and it is poison),

When to pass I have to hide from the sun,
Keep my hair straight and my smiles small,
And discard the clothes I wear that connect me with my people.

But I am white passing.

Discomfort in the mirror, in the soul, and in my family does not erase my privilege,

Or the thin layer of safety that I have
That they do not.

(How long would I last once they were taken—a day? a week? a month? How long, when I am them, before the paint was chipped
Or I found myself falling
Without their support?)

I am white passing.
It is Uncomfortable
To reiterate how much I look like someone I am not,
And redraw the lines between me
And my family.
But I am white passing,
Afforded privilege by my status.
I am trying very hard
To remember that.

People look at me and see me Differently
From my mother, my sister, my family.
I am white passing,
And I need
To remember.