Tag Archives: disability

Why we grieve; on parental reactions to children’s diagnoses

There is a grief that comes with a diagnosis of a child.1

It doesn’t matter if it’s a diagnosis you know, that is familiar, because it is the loss of the child who does not have it.

We grieve because we dream. We grieve because we are not the Buddha, and we are attached to the future, to the child-that-will-not-be, to the child-who-never-was.

It doesn’t matter if the diagnosis brings help, if it brings answers, if there has a plan. We grieve because that is not the path we thought we were on.

It doesn’t even matter if it’s a diagnosis shared with those we love. It doesn’t matter if it’s a diagnosis we celebrate for others. We grieve not because we secretly hate or pity or think less-than of those we love; we grieve because we are changed in that moment of discovery, and we are not who we thought we were.

But we can also celebrate.

When we are ready.

Because we know more about this child than we did before. That is intimacy. That is everything.

We can see them not as a stereotype or a label, though the world might try to make them both, but with curiosity. What does that mean for this child? Who is this person?

(Who am I? What does it mean to be their parent?)

We grieve because we love, and we move on from grief because we love so fucking fiercely. We grieve because a diagnosis is a beginning, and beginnings are terrifying.

We grieve because we are human, and we move on because that is life.

Life is amazing.

So is your child.

So are you.

  1. If I wanted this to be a confessional or talk about specifics, I would, y’know, be doing that. Please note that I am not.

Guest post: Losing My Words

Today’s guest post, which I can relate to far more than I’d like, is from Emilia. You can find her on Twitter, talking rubbish and revolution.

Losing My Words

Words are just about the most important thing in the world to me. I make my living with them, I breathe them in, all day and all night. Sometimes I am so engrossed in my own flow of words, I can’t even hear the people around me, it takes them two or three times to get my attention. But this post, I am sad to say, is hard for me to write.

I don’t mean emotionally–though it is that–I mean literally. For the past five years, I’ve had chronic migraines of various kinds. I have the regular ones, the skull-splitting oh DEAR G_D NO SOUND OR LIGHT FOR ME TODAY migraines, at least once a week. I also have hemiplegic migraines, migraines which mimic a stroke, which are truly terrifying, though these are mostly under control with medication. And lastly, more lately there’s the possibility that I have vestibular migraines which are affecting my balance (I’m still having tests on this, I don’t have a dx on that yet).

My neurologist does a pretty good job with all this, providing me with an array of preventatives, painkillers that keep me roughly functional. Chiro and massage help immensely.* My case, she says, is just one of those tricky ones where it’s more pain management than cure. Which is okay, as far as chronic illness goes. I know it could be much, much worse.

But. I’m vastly diminished from the time I first started having regular migraines. Besides the obvious pain and exhaustion, I walk around in a brain fog a lot of the time, which dulls my critical capacities, my ability to form sentences (let alone coherent arguments). And worst of all for me, I have a mild form of aphasia, meaning that when I reach for a word, I often pull out another word that my mind has mentally related to it as similar. Or I use odd tenses, rearranging sentences into odd shapes, like a Cubist writer. The meaning is clear but the expression is unorthodox.

As a wanky theorist person, this is occasionally fascinating in the way it recalls Ferdinand de Saussure’s argument that language is differential, that words have particular relationships of difference to one another. As a writer with a disability, however, it mostly just fucking sucks.

There are times where I have sent work to a journal, thinking it was fine, only to have the response suggest that I check my work first with a native English speaker. As a native English speaker, and once with a PhD in English to boot, I can’t tell you how mortifying that is.

Worse than even the blow to my pride, is the feeling that I am losing my sense of myself, the very fibre of my being. I feel a tremendous sense of loss, of the person I was. Sometimes I mourn for my lost quickness. Indeed, I’ve begun to feel dispossessed from language itself, the very medium we use to convey our relation to the world of objects and each other.

There’s a fear lingering at the back of my brain, what if this gets worse, what if I end up losing my ability altogether? It’s not an altogether unfounded fear – my neurologist tells me there is markedly increased risk of strokes for people with hemiplegic migraines.

But for now, however painful and slow the process is, I am still writing. Given time and patience, I can still write. I take longer, and I make many more mistakes, and the attention of a good editor/friend certainly helps, but I can still do it… and I will continue to write until I can write no more.

*I hear Arwyn is a Trained Professional in that area, you Portland people should request her services. [Ed. note: I was threatened with pain of pain if I removed this footnote. It was emphatically Not My Idea.]

Is everyone crazy?

I went to a lecture last night by Robert Whitaker, author of Anatomy of an Epidemic, put on by Rethinking Psychiatry. While I was expecting something of a crank, I found, instead, a nuanced, fairly reasonable, persuasive (if imperfect) presentation, and if I get the chance (hah!) I’ll tell you more about it after I’ve read the book.

But right at the end (let’s call it the Inspiring Rhetoric portion of the evening), he argued that everyone has the capacity for mental/emotional disturbance including psychosis (true), that we — humanity — have amazing capacity for resilience (true), that societies play a significant role in both creating and healing mental/emotional disturbance (true), that we have never found evidence of a gross, simplistic “chemical imbalance” for mental illness (surprising, but true), and thus there is no need for stigma, because there’s no such thing as a Broken Brain.

Now, my hard moments aside, I am the last to argue that I am a Broken Brain — but setting up this false binary (either we buy the theory of the Broken Brain or we are crazy-blind1 and sing Koombaya we’re all exactly the same lalalaaaa) sends me to sputtering at speakers, sounding remarkably like the babbling baby tied on my chest. Except rather less cheerful.

Because it is a false dichotomy. We can, and must, recognize the humanity of psychiatric patients; we can, and must, acknowledge the truth that our unjust society has significant influence over who experiences “mental/emotional disturbance” and that it’s often more a case of bad luck (to be born poor, or female, or trans, or nonwhite, or or or — or especially and and and) than of bad genes whether one winds up needing intensive psychiatric assistance; but in doing so let us not erase the existence of those of us who — while not fundamentally different than anyone else — are more prone to psychosis, to mood swings, to obsessive thoughts, to bleak outlooks.

Because while I am not some inhuman Other, some untouchable with wholly different (broken) neurology, I am not the same as the neurotypical/emotypical either. Everyone has mood swings; I swing harder, and faster, and more frequently. Everyone has worries; I have fears that stop me in my tracks and race my heart and quicken my breath and will not be dismissed with a simple shrug or rational risk assessment. Everyone has high energy days; I have nights I cannot stop my brain or my body from circling ceaselessly and uselessly, expelling energy I do not healthfully have. Everyone has wonderfully human, quirky, interesting, imperfect brains; mine is just more so.

I work exceedingly hard at achieving stability, at reducing the difference in functioning between my mind and “everyone else’s”. But I will never be “normal”. I will never have a brain without the tendency to take the entirely human capacity for emotional experience to a near-unbearable extreme. I will never be not-bipolar.

The revolution I long for isn’t one that erases the amazing ways in which I am different; it is one that embraces and celebrates those differences. The revolution I long for doesn’t homogenize everyone and pretend we are the same; it humanizes everyone even though we are not. Like nearly all those who attended Whitaker’s lecture last night, I am not content to accept society’s stigmatization of people like me; unlike many there, I will never accept a “revolution” that erases me.

  1. A la “colorblind” because that’s worked SO WELL for race. (Note: It has not worked well for race.)

The false dichotomy of “body” and “mind”

We speak of the body and mind as though they are separate, when they are anything but, when one rises from and is rooted in the other, the mind not a distinct form but an integral function of the flesh. To speak of I is not to give voice to an inner humunculus, but to express the tip of my nose, the jiggle of my thighs, the oft-ignored deep fascia of my pelvis. Not objects, these, but subject; not multiple, but me.

When anxiety spikes, it is my heart that pounds, my muscles that tense and yearn to strike.

When I feel the deep rise of my abdomen as air fills my lungs, it is my mind that temporarily stills.

When my muscles ache and spasm, it is my mood that turns sour, my temper that quickens.

When my thoughts race, it is my limbs that cannot remain still, my heart and breath that race to keep up.

When I give massage, it is my thoughts and my attention as well as my hands that focus on the receiver, that determine whether that person feels touched.

When I finally, finally sleep it is my muscles that ache less, my thoughts that grow sharper.

To talk of the mind and body as though they are two, separable, is a sometimes-useful fiction, yet this distinction nevertheless is a lie that leads to a life disjointed, the seamless whole sundered into incomplete components; alone each proves inadequate to explain our experience.

This lie is responsible for the dehumanization of hospitals, the depersonalizing of psychiatry, the disembodiment of blogging. We can pretend that persons don’t matter when we’re treating bodies: kick partners and doulas out of birth rooms; offer weight-gain-countering drugs that deny us the ability to speak; deride women for breastfeeding in public when “pumped breastmilk is just as good.” It’s a false duality at least as old as Descartes, but pervades nearly every aspect of our modern life.

What would it mean to reject this notion, to embrace the person-as-whole?

Can we even begin to imagine an answer, given the limitations of our language? “My” nose, “my” pelvis, “my” moods — these imply a belonging-to other than each other, other than the sum-of-all that creates — that is — the me.

Perhaps start with imagining: what would it feel like to recognize ourselves as whole? To be known as whole? To inhabit our entire body? Investigate the lusts of your left pinky toe, let your right shoulder lead, become aware of the impact of anger and joy and boredom on your elbows, your ass, your eyebrows. Imagine a world where such was commonplace, where the self was seen as complete, inseparable from its component molecules, whatever their configuration.

Imagine — and remember it is your left pinky toe, your right shoulder, your fascia and face and elbows and eyebrows and lympocytes and synapses and hormones and neurons that do so.

Last call for AP Our Way zine submissions

Hello lovely peoples! The deadline for submission to AP Our Way zine is, well, now, but since this weekend is a wee bit busy for me1, there are still a few days for you to finish up anything you’re working on and get it in before I hunker down, in all my spare kid’s-not-even-in-preschool-at-the-moment time, to get to editing. The good news is there are enough pieces in for a zine2, so let us all shout hurrah!3

Also, if you do or know anyone (not necessarily a parent with disabilities) who does loverly graphic art and might be willing to submit a piece, please poke them to contact me, or pass me their info that I might do such pokeage.

And if you mentioned your plans to submit something but haven’t yet, expect a bothersome email sometime sooooooon…4

  1. First paid massage as an LMT! Prenatal appointment! Cleaning for home inspection! Finishing a piece for paid publication! Attempting to ward off this nascent SPD! Writing an offer for buying a house! (!) Gestating!
  2. Which doesn’t let you off the hook, mind.
  3. Hurrah!
  4. Which you could easily preempt by, y’know, sending in your piece(s). Just sayin’.