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.
When Cal Montgomery wrote one of his most famous disability rights essays in Ragged Edge Magazine in 2001, he titled it Critic of the Dawn. He included a quote from a Phil Ochs song to explain the context:
To a nightmare of knowledge, he opens up the gate
And a blinding revelation is laid upon his plate
That beneath the greatest love is a hurricane of hate
And God help the critic of the dawn
I’ve thought a lot about that quote over the years.
I don’t actually literally believe there’s hate under the greatest love in the world. I can see a deep love that underlies everything.
But that’s not the point of the quote.
The point, as I see it, is glamour. At least, glamour always comes into this sort of thing for me.
Glamour is a term from folklore for a kind of fairy magic. It tells us to perceive something different than what’s actually in front of us. A cave may look like a castle. Rotting garbage may smell and taste like a feast. Generally glamour tells you whatever you’re looking at is better than what it actually is. It can show you what you want to see, what the fairy wants you to see. Whatever’s beneath it can just be shabby-looking, or else be sinister as all fuck.
I’ve lived my whole life surrounded by glamour, drowning in glamour, learning to see through glamour for my own protection and that of those around me. Learning to react to what is really there, not to what people want me to see, want me to believe. I had to learn early the difference between the taste of love and the taste of saccharine-coated poison if I was to survive the world.
These are valuable skills to have, and to use.
It’s also dangerous.
It’s also often thankless.
But it’s important to learn to see through glamour.
It’s important to learn when you’re being fooled by glamour.
It’s important to know that even if you can’t always see the truth, there is a truth to see.
I know it puts me at a disadvantage, sometimes even in danger, but in many interactions I can only react to what’s there, not to the glamour. I can’t help this. It’s not a choice I make.
Unfortunately, a lot of people want to be fooled by glamour. It makes them feel safer and more secure. It makes them feel the world is more predictable.
Those of us who have to live with the fallout have other ideas.
How do you tell people that sometimes it’d be safer for you as a disabled person to die on a street corner than get care in a hospital?
How do you tell people that you live in a world where the police aren’t gonna protect you?
How do you tell people that the developmental disability service system is largely a dystopia while everyone involved seems to want to believe (or convince everyone else to believe) it’s a utopia?
How do you tell parts of the disability rights movement that hospice is not the kinder gentler alternative to euthanasia, but rather can and often does become a creepy-ass safe haven for euthanasia and worse?
How do you tell people that you can close all the state institutions and group homes and ICF/DDs and have everyone receiving services in their own homes and still basically have an institution?
How do you tell the Independent Living Movement that nursing homes aren’t the end-all and be-all of institutions for disabled people?
How do you tell people that seeking psychiatric help when you’re suffering terribly may be the worst decision some people could possibly make?
How do you tell people that when people like you get murdered by caregivers and family members, most of your society including the judicial system rushes to defend your murderers before they even know what happened?
How do you tell people that people with developmental disabilities can come from utterly dysfunctional families just as much as anyone else and that relying on family for care, or even information about what care to give, is not safe for a lot of us?
How do you tell people that when people like you are abused, neglected, murdered, it’s not because you’re just so difficult to live with that everyone around you snaps?
How do you tell people that all the systems supposedly set up to protect elderly and disabled people (among others) are just as likely to contain us, trap us, even kill us?
How do you tell those people trying so kindly to convince the elderly woman one bed over from you in the hospital, that she needs to go to a nursing home because she falls, that people fall and die in nursing homes too, and people die faster in nursing homes, and nursing homes aren’t protective against anything, they’re just places to forget about people?
How do you tell people that when it comes what’s directed your way, much of what is called loving, benevolent, supportive, wonderful, perfect, even utopian… is a whirlwind of hate and destruction and death?
How do you show them that things aren’t what they have been taught, aren’t what they seem, aren’t what they expect, pretty much ever?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you make anyone care what’s happening to people like you?
People who are invisible beneath all the glamour thrown on top of you?
I don’t know. I keep trying. I keep hold of my rocks with holes in them and I keep trying, I keep trying, I keep trying. If we all keep believing the glamour, we’ll end up eating poisonous garbage and calling it baklava.
One rule of thumb: Love and hate can be actions, not just emotions. If someone tells you they loved their child so much they just had to at least consider murdering them, that ain’t love, people.
God help the critic of the dawn, indeed.
“Noncompliance Is A Social Skill” t-shirts come from RealSocialSkills.org, an amazing website by Ruti Regan. From the about page: “‘Social skills’ is often a slur meaning ‘teaching disabled people to be seen and not heard.’ I am reclaiming that slur by taking ‘social skills’ literally. Social skills really do exist, and they’re not about fading powerlessly into the background. Real social skills are about learning effective and ethical ways to interact with other people. Some of these skills enable us to stop internalizing ableism, misogyny, and other forms of dehumanization.”
Thank you to Cal Montgomery and Ruti Regan, among many others, for continuing each in your own way to do your best to show the reality underneath some of people’s most cherished glamour illusions. It means the world to me that there are other people doing this.
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.
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:
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.
I am very attached to my facial hair.
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.
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.