30 November, 2011

can diagnosis make you feel good?

I have a dear friend who really wants to be diagnosed with ASD. I find this ridiculous. I feel kind of bad about it because I turn into the least supportive friend in the universe whenever the subject gets brought up.

My friend: I think it would be really helpful because then if it makes me feel like crying when someone talks loud, I wouldn't have to feel bad about that.

Me: (badly suppressed laugh)

My friend has a bunch of more specific and less stigmatized--therefore, way more useful--disability diagnoses. I'm like, what's wrong with those? The LD/MH ones more or less add up to ASD, except for the loudness thing, but get an SPD diagnosis if it's that important to you. (My friend isn't trying to access any services that are specifically for people with ASD.)

My friend: Well, I just think it would make more sense instead of me having all these different things.

Me: Well then you already know it makes sense.

My friend: I would feel better if I was officially diagnosed.

Me: Well, okay, but it's not going to feel that official because you're going to have to go to like ten doctors because you look too normal and have too many friends.

Blah blah blah. Am I a bitch? I guess I just think it's up to my friend whether he wants to feel like an asshole for being upset by loud noises, and not only is the purpose of a diagnosis not to make you not feel like an asshole, but in my experience it's pretty much the opposite.

A bunch of people on tumblr were talking about how professionals tend to "treat" people with ADHD basically by telling them to do things that are really hard for someone with ADHD to do. As far as I can tell the same goes for autism. Plenty of non-disabled people in my life, who understand that I have autism as a fact, can think of nothing more offensive than taking my word for it when I say, "this is REALLY hard for me" or "this is making me REALLY upset" or "could you do me a favor by doing this, which would help me do something the way I need to do it, because I can't do it the other way?"

Stock answers:

"Wait, why would that be hard?"

(thinks I am joking about being upset)

"I can't believe you would ask me to do that!"

"Well, why don't you just do this? Why not?"

Seriously guys. Autism, or whatever, is not a word that helps. Having a real disability does not in any way give you the right to feel like anything other than a bad person when you can't do something. It definitely doesn't give you the right to draw your own conclusions about what you need or what is the right way to react to a problem.

I admit that I am kind of a shit friend when it comes to this, because I hate everyone and I feel like the only thing you can do is feel okay yourself, because most people don't want you to feel okay.

28 November, 2011

why no one counts

Something I've noticed: a person with a disability having a conversation about the value of people with disabilities (which you can call whatever you want, but usually something more tactful than "the value of people with disabilities") can never actually be disabled.

The reason this is true is pretty obvious!

Someone who is talking about how reasonable it is for a parent to not want a kid with a disability, or how it's wasteful for kids with disabilities to get the best possible education, or how they'd never date a person with a disability, isn't thinking of fully formed and complicated disabled people.

They're not saying it's reasonable not to want a blind kid who becomes an anarchist and can't go to a family gathering without getting in fights with your more conservative relatives. If they say the word blind, they're usually referring to a kind of blindness that doesn't actually exist--a kind that is not attached to a real person.

This is why people who believe things like that can care about you even if you are disabled. You actually are other stuff besides a disability floating in space, so you don't resemble their version of a disabled person.

So, you know, someone is talking about how super hard it is to have a kid with autism or Down Syndrome or CP and how much sense it makes for people not to want that. And you're like, "But I have autism, it makes me feel bad when you say that, aren't we friends?"

"Well, you have to admit your autism is different. I wouldn't mind having a kid like YOU."

Well, duh, because I wrote you letters, and you told me my hair color is uneven, and we eat Oreos together, you eating the cookie sides while I scrape out the paste with my teeth.

But you have to admit that the way you talk about disabled people, you never let them far enough in your mind to know if they would write you letters too.

27 November, 2011

if this doesn't make sense to you I'm way jealous

(First: I want to say that I might look at this in two days and think all of it is totally wrong.)

As someone who has always found "tumblr social justice" to be at least semi-useful 100% of the time, and funny when it's not very useful, I'm finding myself getting a bit worn out by the idea of privilege.

I actually don't mean this the way people mean it when they criticize the idea of privilege or say it is too widely applied. (Rest your chops and write me an email, please.)

I think what's kind of bothering me is this enshrining of privilege--what's bothering me is actually the idea of criticizing people because they consider something to be an oppressed group/privileged group dichotomy that you don't think is serious.

Yes, it can get very silly.

But it just bothers me when people start drawing a line in the sand about what silliness is. And I totally get if people read this and think I'm ridiculous. But I feel like if some person has felt really erased or somehow less-than, or like she has less of a future, because of some fact about herself, and then she's like, "Wow, this is how it works! This is why I felt like that--this was what was supposed to be the difference between me and other people!" that's, like, really cool. It's pretty cool to start seeing a system or pattern in something that previously just sucked.

Now, going to the doctor and having the doctor assume you are having sex, when in fact you're asexual--for example--is not like having someone follow you down the street and threaten you because they think you are having sex with someone of the same sex. It's not as important or urgent an issue.

But I also think it sucks and is a real problem and I'm happy for any person who is able to think and talk about why it's a problem, and I'm hopeful for the work that person will do--because I think the world will be better when different kinds of people are accepted as real, valuable, and natural.

One of the most frequently mocked aspects of "tumblr social justice," especially the teenage kind, is the way "oppressed identities" are treated like these buttons you can collect. I'm not saying I don't smile a little bit when I see some kid on their tumblr describing themselves as "Queer! Bisexual! Manic! Depressed! Bipolar! Crazy!"--apparently using as many synonyms as possible to make their list of identities longer--but I also feel excited about the buttonlike aspect, because I find it cool that instead of being like, "well my bipolar isn't that severe, and I've never been fired from a job because they knew about my diagnosis, and I'm not a psych survivor, and mental illness isn't a real disability...so I'll just crawl back under this rock," this person can just be like, "cool! I'm in!" and start looking at the world from that perspective for a while, and maybe start to understand some of the things that have happened to them as being part of a constellation of things that happen to mentally ill people.

The way people treat stigmatized identities and the people who carry them is pretty miserable. I think buttony tumblr culture makes this something that people can kind of start thinking about--maybe kind of lazily and shallowly, but shit, they should be thinking about it. And the majority of people have some kind of stigmatized identity that they can think about.

The idea that discussion of "oppression" has to be really hardcore, and that marginalization/abuse/stigma/fear has to be at a certain level before that group of people can be officially considered oppressed, just seems really...well, I get and agree with where it's coming from, but I ultimately feel it makes this stuff WAY less accessible. Because feeling like privilege is this heavy thing that you can't possibly understand doesn't make people interested or passionate.

But privilege is a really deep and consistent part of our world, and I think it's easy to start to understand it.

25 November, 2011

some touch rules

My New Years' resolution is to be really super rude if other people touch me in a way I don't want to be touched.

Here's the situation as I see it:

Touching someone in a way that makes them feel less than good isn't a favor to them that they should have to appreciate and act nice about. It's not the same as a present, where if they don't like it they have to thank you anyway.

Touching someone else isn't a God-given right so if you touch someone and they move their body away from you, you should not have the same reaction you would have if someone yanked a book away from you that you were trying to read. No one is being mean or denying you anything that you deserve.

I get that you might be confused because sometimes I let you touch me even after I was saying that it bothered me, but it is hard for me to say no because I believe a lot in compromising and being polite and making sacrifices to make other people comfortable. I probably stopped stopping you because I didn't want to have a fight or make you feel weird about the fact that you were trying to force physical contact on someone who didn't want it.

But ultimately I just don't think this is the same as compromising on what to eat for lunch. It's a person's body. You shouldn't want to touch someone who doesn't want to be touched. If it makes you feel bad that this is what you wanted and what you were doing, then you should say sorry because you were doing something bad, instead of wanting me to say sorry because I made you feel bad by pointing out what is going on.

So I've just officially decided to be a terrible person, when it comes to this one thing.

11 November, 2011

about this blog

I am actually writing this in December 2012 and hiding it in the past so people don't mistake me for someone who writes real blog posts.

My name is Amanda. I'm 24. For the first two years I was writing this blog, I went to Oberlin College in northern Ohio. After I graduated I lived in Cincinnati for a year and then I moved to San Francisco. My points of view are:

1. I have worked with disabled people a lot, mostly at a summer camp for developmentally disabled teenagers and adults, and at a nursing home for seniors with dementia and mobility disabilities. I have seen a lot of messed up things and first became aware of hardcore ableism when volunteering at a behaviorist school for kids with autism. Right now I work for a severely disabled young woman and her parents and I'm not experiencing turmoil about anything related to my job, which is a brand new feeling.

2. I am disabled. Specifically I have autism, but I refuse to say that anymore. It's a totally immature way of dealing with conflict but most people's conception of autism is so unrelated to who I am that if I mention my diagnosis, everyone tries to argue with me and it makes me feel terrible. So let's just say I have plenty of learning disabilities and I am crazy and I don't know which one came first. But most of my friends are Autistic and my main connection to the disability rights movement is through the Autistic Self-Advocacy Network, so I'm not doing a good job being an unidentified disabled person.

3. It's probably important to note that most people do not perceive me as disabled, especially in situations where I'm perceived as "staff" for a disabled person. "Looking non-disabled" is completely subjective and doesn't necessarily have much to do with who someone is or what their disability is like, but nonetheless I tend to get treated like I'm not disabled which gives me a lot of feelings of not existing, divided loyalty, being worried that I'm faking my disability, etc. It also means I get to hear bad stuff about disabled people because people think there are no disabled people in the room, which explains the name of my blog.

I try and write about power dynamics I experience as a staff person, fallacies, passing, and some other things.

Fallacies--society creates "facts" about disability and disabled people for the sake of convenience. How can you argue about anything when everyone doesn't even question that these things are true?

Passing--hiding or downplaying stigmatized identities. The most well-known example might be biracial people passing as white, but people can try and pass as upper-class, cisgender, heterosexual, non-disabled, etc. You can try and pass on purpose or someone might do it to you against your will. Why pass? How does it help or hurt you? Who do you become when you pass, especially when you are trying to live beyond your means in order to pass? Why do professionals assume disabled people are more healthy/functional if they pass as non-disabled?

This blog is 4 years old and boomerangs a lot in style but you can usually count on a lot of puns, pop culture references, and TMI. If you want to be friends with me or ask me about my actual content, please do so. Don't try and talk to me just because I have autism because I know NOTHING about autism. My house looks like a trash can and I'm drunk all the time.

(I know the first 6 months of this blog are kind of like "look at me I have autism" but I realized it was boring and made me feel gross.)

When I started this blog I used to make a lot of off topic posts so I made a directory of the posts that I thought were actually worth reading, but then I got a tumblr and didn't make so many off topic posts on here and the directory swelled to a point where I can't even understand it. If you can use it I feel sorry for you.

About me: I was born in 1988 in the US to parents who were born in the US, I am white, I am cisgender, my family always had enough money, I am gay, and I generally wasn't in what you would call special ed. I still live in the US, I have trouble thinking about religion or politics but I'm something like a Christian socialist and don't really see a line between those two adjectives. I went to preschool, kindergarten, elementary school, middle school, high school, and 4-year college, and I "live independently" far away from my parents. I work low income jobs and try to pay for my own food, rent, and insurance, but my parents pay for my phone and I would be able to fall back on them in an emergency. I am actually telling you this to apologize for failures in empathy and form some kind of backdrop to my anecdotes, but if you want to explain why I'm not really disabled I want you to have a head start.

10 November, 2011

in the weeks before my 22nd birthday all I could think about was trying to get a serious brain injury because of some convoluted thing in my head about how disabilities you acquire after age 22 aren't considered developmental and I was going to miss my chance to have a developmental disability that people actually believed was real.

I ended up just cutting off a lot of my hair instead of jumping in front of a truck like I kept thinking about doing. then I got suicidal for months and months.

anyway, the reason I am posting this is because I would like to thank my friends for being around when things were really bad. and because it's really cool how boring* my 23rd birthday is feeling in its approach. I'd like to direct anyone to the love post who has not seen it, because I feel that way now more than ever.

sorry this blog stopped being cool/smart. maybe someday again.

*(ETA: not boring anymore, pancho started the BLOG FOR MY BIRTHDAY and it's so good)

08 November, 2011

disabled staff person no. 03847101

disabled staff person stuff is really weird

because I barely had a staff person.

I've had doctors and I guess therapists in the resource room when I was in middle school, but the truth is I don't really know what it is to have a staff person like some people do.

on the disabled vs. staff lines, I can't say exactly I have been on both sides.

as a staff person, I do sometimes feel scared. like this summer, when this guy kept saying disabled people who get upset need strict control and he wished he could hit them. and when I told my boss she told me I should have talked to him about why it upset me.

"it upsets me that you want to hit disabled people, because I'm disabled."

stuff lodges in me. I am not staff even though I'm staff. things happen and they stick in my throat.

other staff are like chameleons. if you're taught to be respectful to disabled people, you more or less are. if you're taught that "this is the real world" and you shouldn't ask them what they want because it takes time, you will enter THE REAL WORLD. and you talk like this:

"people with cerebral palsy are depressed and angry that someone has to do stuff for them, but fortunately these people have MR so they don't understand and they're happy."

staff person: "oh yeah, I guess that's true."

"I feel like some people talk to disabled people like they're children."

staff person: "yeah! they're just people and should be treated normally."

"he looks normal but you can see his elevator doesn't go all the way to the top."

staff person: "hahaha! that's such a funny way to say it!"

will the real staff person please stand up? probably not.

I'm not like this (I think)

cause I'm a real disabled person and I get to have weird conversations like this:

"I think it would be fun to work in a group home but I'd feel bad that people have to live there."

my aunt (who is in a care profession and was giving me advice on jobs): "well, for some people it might be more convenient. they chose to do it after all."

"actually, a lot of people aren't given the choice."

my dad: "amanda means the disabled people not staff who live at the group home. see, look how much she cares about the feelings of disabled people! isn't she caring?"

yeah, so caring. unable to enter THE REAL WORLD and see a bunch of objects or problems in the place of humans. unable to see these things that shimmer in and out of different meanings--are they cute? do we love them? do we respect them? do we think they'd be better off dead? are we too good for this job or is it inspiring?

but I am not a disabled person, I'm staff.

I'm not being bitter even though I am. I hate that some of my friends see me as the enemy sometimes because I am staff. I also think it's fair.

like, if it's really difficult for me to get a job because disability limits my options, and I get this job, and I don't report/identify abuse because I know they all think I'm weird and incompetent, and people won't believe me and I might lose my job and not get a reference

I still let abuse happen.

remember The School that I interned at, that I got my start blogging about? like, with the aversives and the anti-stimming and the crackdown on language that sounds too old or too young for your age. you'd better believe I kept my mouth shut at The School entirely and never told anyone there what I thought. it's probably been less than a year since I last used them as a reference.

other staff think I am a bad staff person. because I don't know what I'm doing. because I'm shy. because I don't have experience. because I'm scared of/intimidated by disabled people.

because I say:

"I'm sorry"

"wow I'm sorry, I spaced, I didn't realize what you had asked me to do"

"I'm sorry" (when someone has yelled at me)

"well, what do you want to do?"

to disabled people.

one time I called a disabled person by the wrong name, started to walk away, realized what I'd done and came back to apologize. "wow, you're so POLITE!" said the staff person.

I don't live in the real world. I don't live in the real world.

but I do.

all this niceness/incompetence means I find it almost impossible to speak up about anything. I love my people really hard and I'd like to pretend that love illuminates me and makes me brave, but that's a total lie. I can't even suggest to people that when a mobility impaired kid who can't talk starts trying to go somewhere, you should probably let him actually accomplish that instead of obstructing every single desire he slowly and painfully tries to act on.

this kid was pointing at the door, looking at me, and making noises. he never made noises. a very old lady pointed at me this weekend, in the nursing home. another lady said, "help me, get me away from that woman, I'm afraid of her, she's going to hurt me, I want to kick her in the ass, I want her to die."

my excuse is I didn't know that woman's name. also found it too easy to tell myself I was wrong. she was just tired. the stuff she was saying to old and disabled people, and the way she was handling their bodies...she was just tired.

anyway, I know that's what everyone else would say, if I said something.

I am not disabled.

I want to be. got mad at you because I make myself sick.

still kind of believe in doing good in bad places, that because I am not a chameleon I would be better suited to bad places than the rest of them are. also worried that life would become an endless supply of things stuck in my throat--this constant reminder--

I'll die in this room if you die in this room?

--that I both am disabled, and don't deserve to be.

06 November, 2011

seriously will have the post someday. doing clinicals for my nurse aide class right now (=no sleep/depressed all the time).

pancho if you spend half the time STARTING A BLOG FOR MY BIRTHDAY that you spend having fights with people at other blogs, the BLOG FOR MY BIRTHDAY would already be here! don't forget your promise.

02 November, 2011

Autistics Speaking Day post 1/3-ish, do NOT link this, it is not done


Today at Walgreens I got my TB test, and I also got a COUPON for $3 off on any purchase above $15. Just like Walgreens wanted me to I immediately forgot what I was doing and wandered around the store trying to find $15 worth of worthy stuff.

In the toy aisle was a $15 FASHION FLUTTERSHY:

fashion fluttershy on the wallgreens shelf

This is probably the most torturous thing that could happen. That is my authentic cell phone picture of the FF and you can see that she really wanted to go home with me. Forever.

My purse is like this:

a purse big enough to carry 2 small books and a lot of small things but not a fashion fluttershy

I was also carrying/fumbling with other stuff. There was no way that I could bring Fashion Fluttershy to, on, and from the bus without dropping her and letting her be hit by a car. I was forced to use my coupon on lipgloss, batteries, and hand sanitizer, which are almost the only things I ever buy. Really hate my life. Stuff is miserable.

This is the only notable thing that happened to me today and I swear to God, I used to have a part of myself that would feel worried and guilty upon experiencing it. You guys! WHERE'S THE AUTISM?

Probs I should be reminded that I have a disability whenever I do anything, or my disability is not real.


I don't think it's really surprising that I feel this way, because our society treats autism like some kind of super strict religion. Even people who think that autism is tragic still seem to think it's a lifestyle. It's just not the RIGHT lifestyle. Autism is characterized as "stealing" people because little kids are growing up with the wrong personality. It's basically like they're joining a gang where you don't look people in the eye or have the right feelings.

I would argue that this explains why most anti-autism rhetoric doesn't focus on the feelings of people with autism. If autism is so bad then they would have a lot to say about their suffering, right? Wrong. We wouldn't want to listen to what they say anyway, because they're in a gang!


For some reason, I always find myself more annoyed by autism pop culture that pretends to be positive. Like, focus-grouped autistic memoirs and especially interviews and profiles by non-disabled journalists.

These interviews and profiles start out with pretty much the same question or concept every time.

"When did you realize you were different?"

This is the cue for the interviewee with autism to tell an exotic story about when they were a kid and used to line up all their sparkplugs/cow fetuses. It needs to be sparkplugs/cow fetuses, and not Transformers or Barbies, because non-disabled kids have those too. The interview can then develop into something that sounds like it was written by a barker at a Depression-era freakshow.

Like other people, I used to be a child. I did lots of interesting and boring things. But talking about those things isn't the most respectful way to do an interview with me as an adult. Actually, age aside, asking me about how different I am just kind of sucks.

Every single time I see an interview like this, I wish the person with autism would say, "You mean, when did I realize I was gay?"


I am different from the norm in a lot of ways--just like everyone else. Like many people with my disability, I did and do love stuff that non-disabled people love too. This summer the New York Times wrote the most obvious article in history about how kids with autism really like trains. Anyone who doesn't live under a rock already knows this. Still, I doubt that my beloved toothbrush

(thomas the tank engine battery operated toothbrush)

is being purchased only for autistic jaws.

In writing about this I deal with an obvious trap. If I try too hard to emphasize the normality of people with disabilities, I might feed into "disabled people are just like everyone else"--a 100% true statement that also happens to be the most annoying trope of all time.

Some fun facts are true about my recent trip to Walgreens. For example, if you sent a non-disabled person to choose $15 worth of stuff to buy I can guarantee they would be able to find those items in the store much more quickly than I did. Without causing me much grief on a case-by-case basis, my comparative slowness adds up. I'm really impressed that two girls in my nurse aide class go to work every day after class. After spending ten hours of my day in class and in transit, I find it hard to even eat when I get home and things like showering and laundry are tasks I can't always manage.

I forget why, but the guy who read my TB test remarked, "You must have a lot on your mind." I don't, but a little is a lot for me, which is fine--but an actual lot would be more than a lot and not really a fair expectation.

Disability adds up. That's the first thing. People don't need to be exotic cow fetus collectors for it to be true, though my lack of cow fetuses used to really wear on my soul.

to be continued