Posted in Being human, family

“Bet your ass we’re paranoid!”

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Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

I grew up on stories of a great-grandma who slept with a hatchet under her pillow.

She was afraid the sheriff was coming for her, you see.  This was supposed to confirm she was crazy.

Maybe she was crazy.  I don’t know.  But the thing is, the sheriff did come for her.

And he took her to the state mental institution.

And she eventually died there.

So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.

Society treats institutionalization as the inevitable result of disability.  It’s not.  It’s a widespread, ongoing crime against humanity.  Just because it’s socially acceptable doesn’t make any less of one.

Posted in Being human, Developmental disability

Taking care of my hair isn’t as vain or trivial as it could seem.

Growing up, I had a weird relationship with my hair.  I wanted to wear it long, and never cut it unless forced.  But I was taught that the price of this was having my hair brushed in a manner that came close to hair torture.

Brushes stuck in my hair no matter how much detangling spray you stuck in.  My mother did not know how to cope with hair like mine, and did not seem to use any techniques to soften what she was doing to my hair.  She’d just run a brush through it no matter what happened.

Every time the brush went through she hit a huge tangle.  Brushes got stuck.  Brushes sometimes broke.  She was determined to brush and blow-dry my hair into submission.  The best she could get was a straight or wavy outer surface with a bushy rat’s nest underneath.  The rat’s nest seemed to form of its own accord and spread throughout my hair with lightning speed.  Then it would be back to the brush torture.

I screamed.  I cried.  I got in trouble.

“Be quiet, someone will think I’m hurting you!”

“But you are!”

Obviously, that didn’t go over well.

Very occasionally she’d take me to a hairdresser.  I never screamed at the hairdresser.  My mom found this puzzling.  It was because the hairdresser was paid to remember the hair was attached to the head of a human child, and acted accordingly to prevent pain.  But the hairdresser really didn’t know what else to do other than blow-dry it within an inch of its life either.

When you’re in the system, you actually get judged on the state of your hair.

I have actual files that solemnly describe my hair as ‘unkempt’ as if that’s an actual symptom of anything.  I’ve talked to others who have the same thing in their files.  It can even hurt your chances of being taken seriously in an emergency room for a physical problem.

So my hair has actually been described as pathological in a psychiatric context.  My hair.

Anyway, I went a long time shaving my head or keeping my hair very short.

But at some point I wanted to grow it out and was looking at ways to do so.

I found out the secret nobody knew or told me:  Most of my hair is curly.  When properly moisturized and taken care of, it forms ringlets.

Brushing curly hair breaks up the natural curl pattern and makes it bushy and tangled.

I used to think my hair needed so much care there was no way I could take care of it.

It turns out caring for my hair is very simple.

I fill a spray bottle with water and pour in a small amount of oils that penetrate or lock in moisture to your hair.

I shake it up and spray it on my hair a few times a day.

I finger comb.

Then depending on humidity and other factors I get waves and ringlets.

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My curly hair more or less as it’s supposed to look.

And virtually no tangles.

It’s that simple.

Hell, in that picture I’d, in a pinch, used a hand lotion with shea butter, olive oil, and coconut oil while my hair was still wet.  It turned out perfect.

For my mom’s part, she’s caught on about the curliness by now and sends me amazing hair oils from time to time.

This, by the way, is what can happen without taking care of it:

Humid hair Photo on 7-5-17 at 7.45 AM
Mel’s hair trying to defy gravity in last summer’s humidity.

Knowing how my hair is supposed to work is part of knowing how my body is supposed to work.  Knowing how my body is supposed to work is something that’s taken away from a lot of disabled people, including me.  I have a congenital neuromuscular condition and nobody’s ever taught me how to live within my own body with this.  I learned to plow through until I drop.  Well nobody’s ever taught me how to take care of my hair, either.  Or even that there was a way to take care of my hair that didn’t involve hair torture.

As a person with a developmental disability, gender expectations are complicated.  In many ways I’m expected to be genderless.  Not genderless as in the word I use to refer to my lack of any gender identity.  No, it’s different than that.  When people say people with developmental disabilites are asexual, they don’t mean the sexual orientation.  When they think we’re genderless, they’re not talking about a lack of gender identity.  What they’re thinking about in each case is that we’re missing something they consider fundamental to being a full human being.  To them, I’m an it, a thing, not a person.

So the expectations I get from my appearance and manner already, get amplified by the fact that I have a developmental disability, and can become dangerous very quickly, including in medical settings.

The psychiatric system outright punishes gender non-conformity in any form.  For anyone presumed to be a girl or woman, that means unkempt hair is a sign of psychopathology.  But they offer no more tips on how to have kempt hair than my family or haidressers had growing up.

My unibrow has been carefully measured and noted by geneticists.  My facial hair is occasion for frequent hormonal testing.  I’ve had doctors pull down my pants with no warning in front of med students in order to remark on the Tanner stage of my pubic hair without saying a word to me.

Everything about every hair on my body has been made out to be a medical or moral problem at some point.  Many things about the hair on my body have been made into a gendered thing, sometimes combined with ableism, sometimes not.  Which for a genderless person is an extra level of aggravating.

Also, because I’m disabled — and fat — and other things — I’m not supposed to give a shit about how I look, because after all I’m just a thing.  And a gross thing at that.  Gross things aren’t supposed to care about our appearance at all.  I’m reminded of Dave Hingsburger’s post about being a disabled fat guy taking his shirt off in public.  Not quite the same, but related.  We’re not supposed to care about our bodies, let alone be okay with our bodies as we are.  It’s just not supposed to happen.

The way my hair grows on my body matters to me.

I am very attached to my unibrow.

my unibrow
My unibrow showing between the top of my glasses and the brim of my hat.

I am very attached to my facial hair.

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The scraggly dark hair that grows on my chin and upper lip.

And I am very attached to taking care of the hair that grows on top of my head, and seeing it as it’s meant to be all along.

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Mel with curly hair showing around the edges of hir hat.

And as trivial as those things sound.  With the amount of crap I’ve gotten all my life for all of those things.  Every single one of them means a great deal more to me than may make sense to most people.  Every single one of them is important.  Every single one of them I’ve had to fight for, sometimes literally, physically.  Every single one of them has been picked apart in terms of disability at some point in my life.  Every single one of them has been affected by how I’m perceived as a disabled person.  Keep in mind doctors once told my parents it didn’t matter (because I was disabled) whether I had teeth, so hair isn’t even on the agenda.

So yeah, I care about my hair.

But not for the reasons you’d think.