Showing posts with label chicago style is oppressing me. Show all posts
Showing posts with label chicago style is oppressing me. Show all posts

19 May, 2014

Disabilarchy?

I've noticed that some portrayals of the disability experience in fiction are pretty much diametrically opposed to the disability experience in real life.

In fiction:
  • Employers have no choice but to hire disabled applicants even when they are not qualified, because they could be sued for not hiring a disabled person
  • Disabled people's work is disproportionately rewarded even when it's bad, because people feel sorry for us or are just positively biased toward us
  • It's easy and profitable to fake a disability in order to get disability benefits from the government
  • Professors have to provide ridiculous accommodations for students who say they are disabled, when in fact those students are lazy or not smart enough to be in college
  • People with mental disabilities are the perpetrators of violent crimes
  • A "black transgender disabled lesbian" has a big advantage in life because people want to give her jobs and other opportunities
In reality:
  • Employers often do not want to hire disabled applicants because of their mistaken ideas about what our disability means.  It's easy for them to discriminate against us because they can just say "We didn't think you'd be a good fit for the job" or something like that.  They also can fire someone for being disabled if they just pretend to fire them for a different reason.  Even if an employer admits that they are not hiring someone or firing them because they are disabled, suing someone is expensive.
  • Some disabled people are legally allowed to be paid a fraction of minimum wage if their employer says they cannot work as fast as a non-disabled person. For example, Goodwill does this, and plenty of people think it is acceptable. (Articles about Goodwill: here and here, and many comments asserting that disabled people are not good enough workers to deserve minimum wage: here, here, and here; and saying that people who need accommodations do not deserve minimum wage, even though accommodations are their legal right: here).
  • In the US and the UK, it is a lot of work to even apply for disability benefits (more work than some disabled people can do); many disabled people are denied benefits for stupid reasons; and the benefits are not very much.  You also then can't save money, or you will lose your benefits.
  • It's a lot of work to get accommodations in college (again, more work than some disabled people can do; my post about that here); and even if you do all the work to get accommodations, a professor might refuse to give them to you if they feel like it.  This happened to someone I knew whose professor thought it was stupid for her to get a note-taker, so he dragged his feet on arranging it and then tried to arrange it in a way that revealed the disabled student's identity, which he was not allowed to do.  Many disabled students in college are struggling due to lack of support, and about half the (smart, hardworking) disabled kids I met in college had to drop out.  Still, some people imagine that disabled students are coasting through life on a fluffy cloud of accommodations (here).
  • People with mental disabilities are disproportionately the victims of violent crimes and society often makes excuses for the criminals, causing this type of crime to seem more and more acceptable for potential murderers and abusers.
  • A black transgender disabled lesbian has to deal with racism, transphobia, ableism, homophobia, and sexism; the intersections thereof; and feeling like an outsider even in minority communities.  Plus, she's constantly invoked as a joke to show how bad "political correctness" supposedly is.
So, you have to ask: why is being disabled portrayed as being so easy and coming with so many opportunities, when in fact it comes with a lot of disadvantages?  Watching TV (and hearing some people talk), you would think that we live in a society ruled by disabled people.

01 January, 2014

Away From Home

warnings: abuse, suicide, supercrippery

What is a supercrip?

I use the word supercrip a lot (though not as much as I used to) and it has a very specific meaning for me.  For some people, the word supercrip just means a disabled person who is successful or heroic, but usually it has negative implications.  Often the term refers to a media stereotype of a disabled person who “overcomes their disability,” especially by playing sports, and becomes an inspiring example for kids who don’t want to do their homework.

For me, supercrippery isn’t about how other people see me, but how I see and treat myself.  My definition of supercrippery has to do with putting a non-disabled picture of success ahead of your own safety and happiness, including placing yourself in physical and mental danger so that you can resemble this picture as much as possible.  For example, if you do things slower than average, you might decide to deprive yourself of sleep so you can be as productive as a non-disabled person.  Obviously, making this decision requires you to have a lot of self-hatred and to feel that you don’t deserve to have your basic physical needs met because you are impaired.

I’m doing well now but when I am having more mental health problems supercrippery is a huge part of my life.  This post actually isn’t really about supercrippery but I want to explain what it is and tell people that if these ideas are triggering for you or make you really upset, you might not want to read the post.  The post is actually going to be about comparing disabled young adults’ life trajectories to each other, but I feel like this kind of ties in to supercrippery because it is usually comparing people to each other based on how well they fit a non-disabled standard of young adulthood.

Bella and Sandra

You know I love my fake names, so let’s have two disabled girls who go to the same high school.  No one’s disability is exactly the same as someone else’s, but Bella and Sandra have many obvious things in common (I choose these particular traits because they make Bella and Sandra easy characters to write):

  1. They both are diagnosed on the autism spectrum
  2. At some point they both receive treatment for self-injury, anxiety, and depression
  3. Adults who meet them always comment on how intelligent they are
  4. but they get Cs and Bs in school, to everyone’s consternation

That was in high school.  Over the next 7 years, this is what happens:

Sandra goes away to the best college she can get into, graduates in four years, and starts a career.  (Let’s say she becomes a teacher and is working towards a goal of becoming a school administrator.)  She lives a few states away from her family.

Bella goes away to the best college she can get into.  In her first year, she takes a medical leave because of mental health problems, comes home to her parents, and never returns to that school.  Six months after that, she starts occasionally taking classes at the community college.  She completes a few classes but hasn’t earned a degree.  She gets a job at the grocery store and at age 25, she is working at the grocery store and has no plans to move out of her parents’ house.

Most people who look at this situation will either make a judgment about disability, or about people’s moral qualities.

Judgment about disability: Sandra is more “high functioning” than Bella because she lives away from her parents, has a college degree, and has what’s considered a better job.  Bella’s disability is more severe.

Moral judgment: Sandra is hardworking, brave, motivated, etc. and “overcame her disability” by putting in effort and really caring about living independently and having a job.  Bella is unmotivated, directionless, lazy, scared of the world and of growing up, and is “using her diagnosis as an excuse.”

Moral judgment of their parents: Sandra has “tiger parents” who pushed her to succeed and didn’t let her use her disability as an excuse.  Bella’s parents failed her.  They babied and coddled her and now she doesn’t have the skills she needs to be an adult.

Actually, when I say “most people,” maybe I should say “me”--I’ve always compared myself to other young adults with similar disabilities, and I’ve always agonized over what makes one person more conventionally successful than me, and another person less conventionally successful.  If they drop out of college and I don’t, is their disability more severe than mine or am I more dedicated than they are?  If they work 80-hour weeks and I don’t, what’s wrong with me?  Why can’t I be like that?

A few days ago, I realized why.

Seven Possible Reasons They Turned Out Differently

1. Sandra’s family is abusive.

Let’s say that in their first year of college, Sandra and Bella were both really stressed out, this triggered a depressive episode in both of them, and they both attempted suicide but were stopped by a friend.

Bella decided that she wasn’t ready to be a full-time student and live without the supports her parents gave her (meals, reminders about when to do chores and how to take care of her hygiene, help with scheduling doctors’ appointments, and emotional support).  She decided to go home, focus on managing her depression, and try to identify and avoid situations where she might become suicidal again.

Sandra’s friend encouraged her to take a medical leave, but he didn’t understand.  She was extremely grateful to be at college because for most of the year, her family couldn’t hurt her; and because she was talking to them less, some of the things they had taught her started to unravel.  She realized that the things they had done were really bad and weren’t things she had brought on herself.  If she could live away from her family, she realized, she could fill her life with people who didn’t hurt her.

Sandra felt like if she went home she would get more suicidal, not less.  She also felt like being away from her family was worth the risk of dying.  So Sandra made her friend promise not to tell what happened, and she did the best she could to hide her depression so she did not get suspended from school for bad grades or being “a danger to herself.”

If it’s really dangerous or painful for someone to be at home, then that is a big factor in how determined they will be to live away from home.  For example, if someone regularly forgets to eat and is in danger of starving if she lives on her own, it’s safer for her to live with her parents--unless one of her parents has tried to kill her.  Then she doesn’t have any safe options.

2. Bella’s parents have more money.

Bella gets along well with her parents, but she doesn’t particularly like her hometown and dreams of living somewhere else.  She also wants to be a vet tech and she is taking classes, but school is really hard for her.  If she takes a full load of classes, it occupies so much of her energy that she isn’t able to spend time with friends, sleep and eat properly, and play music--things that are really important to her happiness and emotional stability.  Instead, Bella is taking one or two classes a semester because that’s a better speed for her.

Sandra also gets along well with her parents, and also is not able to be very healthy or have a social life if she is a full-time student.  But her parents struggled to support the family when she was in high school, and they can’t afford to keep supporting Sandra.  She goes to a college that offered her a scholarship, and works in the summer to help pay for expenses the scholarship doesn’t cover.

Sandra feels like she works all day at college, struggling to keep up with her non-disabled classmates.  She’s also really lonely; she has to say no most of the time when people ask her to hang out.  She usually eats Doritos and coffee for dinner while studying in the library, and when she sees groups of friends walking to the dining hall together, Sandra feels like her life is empty.  But she has to be able to do this--for one thing, her scholarship won’t pay for more than four years of school.

3. Their hometown is mostly white and Sandra is black.

At best, Sandra feels like an outsider because her family is one of the only black families in their town and she’s barely had any black friends.  At worst, white people have threatened her.  One reason college is exciting is because there are more people of color; she makes friends who share her experiences, she gets involved in anti-racist organizing, and she feels more accepted and safer than she did in her hometown.  Even when she’s having mental health problems, she doesn’t want to go home and feel the way she felt there.

Sandra also really wants to be able to support herself financially and live independently so that after college, she can choose to live somewhere where she doesn’t feel scared and isolated.  Sometimes it’s really hard for her to make it through the day, at college and after college when she’s working as a teacher.  But it’s worth it.

Bella is white and does not have this concern.

4. Sandra falls in love.

In her first semester of college, Sandra starts dating a guy named Ed.  She continues dating him for the first year of college.  In her second year, Sandra becomes extremely depressed, and Ed ends up in the role of her emotional support person.

Sandra really doesn’t want to go home to deal with her mental health problems, because right now, Ed is the only thing that makes her at all happy.  Ed loves Sandra but he isn’t super comfortable with being the only thing that makes her happy.  He encourages her to at least try to deal with her depression even if she isn’t going to take a medical leave, and he helps her go to therapists, try medication, and do other things to improve her mental health.

When they’re juniors, Sandra and Ed start living together off-campus.  Sandra has problems with multi-step tasks like cooking food and cleaning; and she also has dyspraxia which makes it hard for her to do some household chores.  Ed understands this, so he always does the chores that Sandra can’t do.  They work together to make charts and other reminders to help Sandra with multi-step tasks.

After college, Sandra and Ed get married.  They move to the city that Ed is from, where his parents live.  Ed’s parents love Sandra and treat her like their own daughter.  They’re both teachers and Sandra often asks them for advice when she is having problems at work.  Sandra tells them she is overwhelmed by the idea of finding a GP, dentist, eye doctor, etc. in the city, and Sandra’s mom finds them for her and even reminds her to make regular appointments.

Bella would like to move away from her parents--they’re nice, but they annoy her sometimes and she really wants to live somewhere that isn’t so hot in the summer.  But how can she possibly do that when she can’t even make a bed by herself and often gets confused when trying to cook basic meals?  What if she moved far away and her job was too hard and she didn’t know anyone and didn’t have anyone to talk to?  What if she was too stressed out and confused to ever find a doctor or remember to make appointments, and she got really sick and didn’t even know about it until it was too late?

She wants to do it, but she just can’t.

5. Bella is really happy living with her dad.

Sandra likes her parents just fine.

Bella and her dad are extremely close; they have long conversations about absolutely every subject, and they share a lot of the same interests and values.  She even thinks he might be Autistic too.  Bella’s mom left when Bella was three, so she and her dad have had 15 years to learn to function as a unit.  As Bella got older, her dad encouraged her to help out around the house and things gradually developed so that they both were taking care of housework fairly equally, each doing the things they were best at.

It was really important to Bella to do well in college.  Everyone said she was super smart and she wanted to defy the negative expectations people had of her because she was Autistic.  But when she went to college, it was really hard for her to live in a dorm instead of living the way she was used to, and the workload was too much for her.  She started having panic attacks and shutting herself off from her new friends, and when she started to fantasize about killing herself, she knew she had bitten off more than she could chew.  She needed to go home and be in her regular house and spend time with her dad, who she could talk to about what had happened and figure out when she would be ready to go back to college.

But after going home and after a long time of trying to be ready, Bella realized that she wasn’t ready and didn’t want to be.  She loved her town.  She still had some good friends who lived there--and her best friend was her dad.  She didn’t want to move away from her best friend just because adults weren’t supposed to live with their parents.  She and her dad got along well and were a good household.  Now that she had decided what she wanted, Bella tried to think about what, if any, plans she should make for the future.

Bella has decided that she wants to work part-time at the grocery store; it gives her days a good structure and she meets new people.  She also is taking classes so that she can have a higher-paying job in the future, but she isn’t pushing herself that hard because there’s no immediate need.  But if her dad becomes sick or disabled when he’s older, Bella wants him to be able to keep living in their house and not have to go into a nursing home if he doesn’t want to.  He’s always supported her choices and she wants to be able to support his.

6. Sandra is a supercrip.

When Sandra was a kid, she could tell that people thought less of her because she had disabilities.  They didn’t expect her to go to college and they didn’t expect her to be able to drive and they didn’t expect her to be able to live on her own, or get married, or have a high-paying job.  Sandra hated the way those people looked at her and she grew up feeling like the only way to be a worthwhile person was to accomplish all the things they thought she couldn’t do.

When Sandra is in college, she puts her academic success ahead of everything.  So what if she works slower than the other students?  She’ll just stay up all night several nights a week so she can get work done.  She doesn’t really need to eat regular meals either.  She doesn’t deserve to eat regular meals if she can’t do as well as the non-disabled students.

Sandra avoids talking to her parents because they always get really worried.  They ask her if she has any friends, if she likes the campus, if she’s taken any time off from schoolwork to just relax.  When Sandra explains that she doesn’t have time to do that because she’s not as smart as the other students, her mom asks Sandra to come home for Thanksgiving.  They’ll pay for it.  But Sandra wants to stay at school over break so she can get ahead on the reading.

Sandra’s mom says she really just wants Sandra to come home for a while so they can take care of her and she won’t have to be so tired and stressed all the time and can get some sleep.  Sandra tells her mom that she is fine and she’s 19 now which is old enough to act like an adult.  If I’m 19 and can’t be an adult, I don’t deserve to be alive, she thinks to herself.  This is Sandra’s mantra.

Sometimes Sandra thinks about killing herself a lot.  She’ll wake up feeling like it is going to happen that day.  But she would never tell anyone about this, because they would force her to take a medical leave.  Sandra would rather die than not graduate college in four years.  So she might as well keep going whether she dies or not.

Bella doesn’t have this attitude; she feels like she deserves to sleep and eat regularly, and she would definitely rather take a medical leave than die.

7. Sandra is extremely beautiful and charismatic.

This gives her an advantage because a lot of people really want to spend time with her and do things for her.

Bella is an average girl with average charisma and can’t “overcome her disability” because she doesn’t receive all the support that Sandra does.

And so on.

Golly Sandra, you’ve grown up really crazy

When I was in a Sandra #6 situation, I would get super angry at disabled people who took leaves from school.  Like, I would hear about someone I didn’t even know taking a medical leave because they had a panic attack and I would be like, “Fuck him!  I almost killed myself this morning and I still went to class even though I was crying too hard to see the Powerpoint.”  I would start being mad at the person for doing something that I thought was weak and immoral.  Didn’t they know that they should try to do things as well as everyone else?

Obviously being mad at people for taking a medical leave isn’t a sign of a really well-organized mind, but I don’t think I realized until recently how disorganized that anger was.  The reason I was fixated on these people wasn’t because they were doing something bad, but because they were doing something good.  They were caring about themselves.  Even if they prioritized a non-disabled version of success a whole lot, there was a certain extent of suffering that they weren’t willing to go through.  They didn’t feel like they deserved to die for being disabled--or if they felt like that, at least they knew they were wrong.

I wasn’t feeling superiority, I was feeling inferiority--I was jealous of them.  They valued something more than looking “normal,” being “smart,” hitting “milestones” at the same age as non-disabled people.  Maybe they had friends at home so they wouldn’t be isolating themselves from everyone if they couldn’t stay at school.  Maybe their parents wouldn’t be disappointed in them and say they should have worked harder, been more organized, taken medicine they didn’t want to take.

I’m hesitant to write about this the way I am, because of the power dynamic.  People like Bella are judged so much.  People see it as a failure for a young adult to live at home, and for a disabled young adult, living at home can seem like the fulfillment of lifelong low expectations.  But in every scenario I wrote, Bella is making really good decisions.  She may not be a success if the goal is to imitate a non-disabled person, but she is prioritizing her happiness and safety and she has goals that she can accomplish without ruining her life (and imitating a non-disabled person will make your life empty even if it doesn’t kill you).

In the supercrip scenario, Sandra isn’t making a ton of sense, but in a lot of the scenarios she is making good decisions too.  In some of the scenarios she isn’t receiving adequate support to make it through college or live on her own, but going without support is the lesser of two evils.  In other scenarios, like the one where she falls in love with Ed, Sandra is really lucky and support falls into her lap, so she loses nothing by living away from her parents.

In most of the scenarios, Bella is able to live with her parents because she has an advantage that Sandra doesn’t have--she is white, she has more money, her parents aren’t abusive, she doesn’t hate herself, etc.  In other scenarios, Sandra is able to live away from her parents because she has advantages that Bella doesn't have.  If Sandra and Bella are still friends at age 25, maybe Sandra is jealous of Bella because she feels like Bella had more choices.  But Bella is probably pretty jealous too because society judges people like her and wants her to feel worthless.  She also doesn’t have the freedom that Sandra has.

Depending on the scenario, one of them can often be considered better off than the other, but only a few of the Bellas and Sandras are really happy with their lives.  This is because, bar extraordinary luck, a lot of people with disabilities like Bella and Sandra are not considered to be entitled to support in living.  They have to choose between living in bad physical and emotional condition so they can be free (and seen as a success), or living with parents, or getting in a relationship with someone who is willing to help them, or just ragequitting the whole thing.

The choice they make is determined by a whole lot of factors, and two people with exactly the same abilities can make totally different choices without either of them making a bad choice.

(I wrote this post in July and didn't end up posting it because I wanted to nitpick it but I ended up not doing that.  My friend had said that in my posts, I presented all the Bellas as really smart for choosing to stay home.  I know there's plenty of bad reasons to drop out of college but I don't really feel the need to enumerate them because dropping out is so stigmatized and everyone assumes it's being done for a bad reason, while disabled people who graduate college are idealized.)

24 August, 2013

If you don't know who I am

When I graduated from Oberlin in 2011, I had an idea to make a post called "Is Oberlin a good college for students with mental disabilities?" so that prospective students with mental disabilities could get an impression of what it was like. I didn't get around to it in the first two years after college, and I already feel like it's been long enough that I can't really act like an expert on Oberlin. For one thing, there's a nonspeaking Autistic guy going there now and his presence may have changed things.

I do want to talk about a particular phenomenon though and I think it might be something to think about when it comes to any college that has a reputation like Oberlin's. It's from a comment I saw on Oberlin Confessional or ObieTalk, which were anonymous forums where students gossiped, trolled, and tried to find people to have sex with. Some of the discussions were more cerebral than others and this time, people were talking about whether Oberlin was as tolerant as people thought it was.

The comment was something like, "Most people at Oberlin don't understand my experiences or my background, and don't seem motivated to learn. They say they accept everyone, but you can't accept me if you don't know who I am."

It was better written than this and it really struck me. It also reminded me of some of my own experiences as an Autistic student.

I'm not afraid to say that the director of disability services at Oberlin was unhelpful to me. I've heard she did a lot of good things for mobility impaired students, but when it came to me she wasn't very willing to help me and often implied that my disability wasn't real. One time when she was telling me why she had taken away my priority registration, I mentioned that I was going to be a classics major and she said like I was proving her point, "Well the whole classics department practically has Asperger's, you'll be fine there!"

When I got a little older and was more political about things I started getting annoyed by the whole verbal-Autistic-person = geek stereotype, but even aside from the stereotype, there's this idea that as long as an environment is "geeky" or "awkward," it's automatically an accepting environment for Autistic people. We don't need accommodations, we just need geeks.

For me, being around "awkward" people is not that helpful. Sure I might have more to talk about with people who are really into pop culture and I might have a more similar sense of humor to people who identify as geeky or awkward. So on a superficial level, it's easier for me to be roommates with people like that or be seated next to people like that on a cross-country bus trip. Things will go smoothly, conversation-wise.

I'll even go further than that and say that sometimes, geeky or awkward environments can be more accepting places for people who are visibly different because of autism, mental health problems, or learning disabilities and they have often been more comfortable for me than environments that aren't oriented that way.

But:

1. In an academic setting, the teacher and other students being "awkward" doesn't have anything to do with whether the student will be accommodated for learning disabilities, auditory processing disabilities, anxiety, etc; or how the teacher will respond if the student is unable to complete work as fast as other students or in a standard way because of her disability. (This really depended--one thing about Oberlin is that the professors have a lot of freedom about how they do stuff so my professors were able to excuse things or let me do things differently if they wanted to. Obviously, some didn't want to.)

2. When it comes to forming close friendships or close relationships, whether someone is "awkward" doesn't have anything to do with whether they understand what it's like to have a disability and whether they have empathy and respect for someone who's not able to do the things they consider normal. I've had some friends I really got along with on a doing-stuff-together-and-talking-about-stuff level, but who I wouldn't be able to have a really deep friendship with because there are parts of my life that will be a problem or just incomprehensible to them.

3. In both settings, "awkwardness" doesn't prevent non-disabled people from using the r-word or saying fucked up things about Autistic people or disabled people in general, or non-disabled professors teaching Disability Studies classes to mostly non-disabled people without anyone ever acknowledging their privilege, or groups for disabled students never really getting off the ground, or disability not being included when people are talking about marginalized identities.

So that's pretty much what I have to say about Oberlin. And I actually really liked going to Oberlin! But there are limits to "awkwardness."

04 October, 2011

3. Real Life Facts

(Three)

This is just sort of a combination of part two. But I want to tell you some things you might not know (I guess).

In college, a person with a disability needs documentation in order to get accommodations. Even if the person comes in with severe CP and is like, "I need a notetaker," they still need a professional to have signed off on the fact that they can't take notes.

Usually the documentation has to be from the past three years, in case someone who has dyslexia might have stopped having dyslexia and lied about it just to be an asshole.

A lot of the time, if you are supposed to get an accommodation on tests, you have to get signatures allowing you to do this every time you have a test. Not everyone really has the brains to get signatures every time, but oh well. Not everyone has the brains to go and talk to a professor about their accommodations on the first day of class, which is also something you're supposed to do. But PWD don't get any support in doing that stuff.

If you don't mind me saying, this strikes me as a situation where people with disabilities are assumed to be con artists who are just trying to get sweet deals like enlarged handouts in class or their own special room to take a test in because they think they're too awesome to be in the same room as other people. It seems like PWD basically are supposed to get punished for being disabled and thinking that it might be their right to have school be as accessible to them as it is to everyone else.

I don't have experience with this, but my impression is that a lot of this stuff also happens when a person is on (or trying to get on) Medicaid or SSDI, or when a person is on disability leave from a job. They are assumed to be lying. Pretty much anything will prove it. I remember reading about a woman who was fired because she appeared smiling in a picture on Facebook, while she was on leave for depression. I think we have all seen people (including politicians) Tweet about how anyone who gets any kind of disability benefits, and also socializes on the Internet or in a bar, must not be really disabled. Doing anything fun or political or emotionally important to you means you are not disabled. If you can get yourself together to go to a bar for one hour, you clearly can get yourself together to work full-time. Even if you were in bed for 20 hours that day?

I saw a person Tweet during the TPGA dialogues about how self-identified disabled people writing TPGA posts and participating in comments could not possibly be struggling that much, which brings me around to what I was saying. These snap judgments of ability (and automatic attempt to discredit people who claim to be disabled) are exactly like real-life snap judgments that can have a significant effect on a disabled person's REAL LIFE.

So when you say, "You obviously can live on your own,"

and the person actually can't, and it is really scary because she can't live with her parents anymore, but she also knows that most people would assume she can live on her own and she won't be able to qualify for any kind of help, or even ask people she knows for help because they won't believe that she actually needs help,

her response to you is likely to be:


(Realistic Haunter.)

13 May, 2011

I hate hate hate when professors have office hours in fucking cafes or random places. Or especially when they say they’re having them in a cafe and then they actually have office hours SITTING ON A WALL BEHIND THE BUILDING. This is one of those things where I bet everyone else thinks it’s SO COOL (just like the project we had in my history class last month that involved social networking as a historical character and I had no idea how to get a good grade, when or how much to work on it, etc.--I was blindsided when I got a B because I thought I’d do badly because thinking about the project made me cry and I got the bare minimum done at random intervals).

First off I feel like it implies that everyone knows where a certain place is and has familiarity with it, but I don’t have familiarity with this place and had never been there before, and felt anxious about going. I’m sitting here feeling all anxious about: will they tell me to leave because I haven’t bought anything? If I asked for the wireless password, would they say no because I haven’t bought anything? What if my professor doesn’t realize I’m here, since he’s NOT EVEN INSIDE and only came inside for a minute to collect the person he’s meeting with before me? Should I go outside and creepily sit there so he can see me from the wall where he’s meeting with the other student, which will probably make it look like I’m telling him to hurry up, when I don’t even care because I’m doing work (except that it’s annoying that I don’t have wireless)? I tried to go into the bathroom and it was locked and instead of assuming that someone was in there (which turned out to be the case when I tremulously asked for the key) I just assumed that it’s one of those bathrooms where you have to ask for the key because that’s how things go for me usually, awesome.

I can’t even email my professor to inform him I’m here because of the NOT WIRELESS.

Dear professors of the world: please, please, please, be boring forever. Don’t have class outside. Don’t randomly have class involve a group activity if it’s a lecture class. Also, no group projects ever please. No fun projects unless you provide a boring alternative such as a PAPER. Even if the paper is intellectually/academically more challenging the fun project, I will suck it up, that’s how much I loathe fun. Have office hours IN YOUR OFFICE. IN YOUR OFFICE. IN YOUR OFFICE. Not at a picnic table, not in a COFFEE SHOP, and not ON A WALL BEHIND A COFFEE SHOP. Or if you have to do this because you’re SO QUIRKY (and I admit I’m being a bitch, and my professor probably just has a whole day of meetings and wants to be somewhere he can eat/drink), make it super 100% easy for students to find you and know that you know that they’re here.

Sincerely,
The lone voice of super boring, uncreative, wonderful, less-anxiety-producing liberal arts education,
AWFV


Update: It got worse.

07 March, 2011

how to find out if your students are disabled!! by AWV, age 8

Sorry to brag, but you know. It happens. I linked my disability services post/video on tumblr and it got 26 notes. Then someone else posted it on tumblr, and their post got 73 notes. Then someone else posted it and their post got 67 notes. That's 166 notes! Now I get to feel slightly accomplished despite sucking at a bunch of other stuff.

First, an epigraph from my dear friend Lion Face: "You make a bad bitch. Please don't be like that."

So, yeah, I'm being kind of bitchy about this and you should go look at my tumblr and read her post so you can make your own judgment--but this disabled professor reblogged it and gave me a big talk about how PROFESSORS ARE PEOPLE TOO and I SHOULDN'T BLAME PROFESSORS (which I wasn't doing, I'm pretty sure the video was about how disability services suck and professors should be aware of that, not about how professors suck) and DON'T I KNOW THAT PROFESSORS ARE SOMETIMES DISABLED TOO. This last one really throws me for a loop because I think it's implying that I should be practicing ~disability solidarity~ and not criticizing ableist, able-normative, and inaccessible behavior because it might be coming from a disabled person! I don't get this, especially since I also sometimes work jobs where I am meant to be supporting disabled people, and I do not feel that my disability in any way exempts me from being open to criticism and trying to figure out if I'm doing a good job.

Anyway, one question this person asked was, even if it's hard for students to make the decision to come and talk about being disabled and ask for accommodations, how else could the professor possibly know the student is disabled otherwise? HOW IN THE WORLD COULD ANYONE EVER FIND THIS OUT?

Well...

~how to find out if your students are disabled!!!11 (and if they need accommodations) (and generally make your class closer to universal design)

1. On the first day of class, hand out little index cards or forms asking questions about the students. A lot of professors already do this when there's a limit on class size and they want to decide who is best suited for the class, or for other reasons. (My Latin professor would terrifyingly shuffle her index cards and use them to call on people. We were reading Boethius, so she called it the Wheel of Fortune.)

2. Have one of the questions be more or less, "Are you disabled?" but ask this in a very open way, possibly with a joke involved, so no one feels that they have to answer the question "No" because their disability isn't ~serious~ enough or they don't have documentation.

3. On the syllabus, write the usual thing about how disabled students can contact the disability services office if they need accommodations. But also say that in some cases you are open to communicating with a student directly, and doing things differently with them if it seems fair to do so. And say that if an aspect of the way the class is set up seems really inaccessible, you encourage students to contact you about this; you can't promise that you will change the structure of the class, but you will consider it if there are no drawbacks. After all, in some cases universal design benefits everyone.

4. In #2 and #3, make it possible for people to state exactly what they have trouble with, instead of stating their diagnosis if they are uncomfortable.

Something pretty obvious is that no one likes to go talk to a professor about being disabled and needing an accommodation, especially because you often have no idea how the professor feels about disability or will react to your disability. (This particular reblogging professor writes on her syllabus that she has a disability, which I think is great--but in general, students usually don't know what the professor's experience with disability is.) And also because asking for an accommodation may lead to the professor thinking you're lazy and having a low opinion of you.

So...if the professor normalizes the idea of disability and shows that they are comfortable with disability and won't just tolerate but will accept a conversation about accessibility, and makes it possible to disclose disability casually and without speaking...then they will know when students are disabled and when students would benefit from accommodations. Without students having to come and tell them. I'm not a professor so maybe I'm wrong, but would this method really be so difficult?

04 March, 2011

disability services are not accessible!



Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."

Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...

So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.

So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.

Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.

So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.

So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.

Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.

But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.

So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."

So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.

"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.

But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.

So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.

For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.

Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.

(break)

Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.

Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.

Um, yeah, shit, what was my third thing?

I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.

Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.

So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.

Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.

Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.

What else did I have to say? Let's find out.

Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.

So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?

Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.

Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.

Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.

Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.

(break)

Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."

So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.

Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.

And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.

26 December, 2010

probably going to delete this because it makes me sound super unstable, so enjoy it while you can.

I'm going to a doctor tomorrow to hopefully get a lot of cognitive/learning testing, because even though I've been diagnosed with ASD a few times and stuff, a word like ASD isn't really useful when you are just really stupid at the things I'm stupid at. And I really want to know, and be able to tell people, exactly what's going on. My mom told me to write some stuff to talk to him about and I wrote this (but I won't say all of this obviously, but I thought you might think it was interesting):

Emotional Problems--which I understand are going to seem like the main thing, and it’s going to seem like, why am I going to a learning specialist for this stuff, but bear with me.

Anxiety, which sometimes feels like stereotypical anxiety but usually feels like a boring or distracting thing, like fatigue, or dissociation/derealization (I think this is interesting: I have a very strong sense of time and past, so sometimes people and things from a very specific time period will become unreal, while I, and people and things from other periods of my life, will still feel real), or a really strong desire for something to happen, or a desire to leave, when I’m waiting in a line or in class--like, a sudden sense of intense anger if for example someone cuts in front of me in line or my professor says, “well, let’s just stay a minute longer so we can all finish translating this”

Suicidal ideation, et. al. Mostly, I had a really strong interest in getting a traumatic brain injury by getting myself hit by a car, or jumping out a window headfirst. About the time I turned 22, it was all I could think about, since if you get a TBI before age 22, you’re classified legally as “developmentally disabled,” but if you get it after age 22, you’re classified as “elderly/physically disabled,” and you get worse services. Besides, I already have a DD since I have autism, and I’d rather get services with people like me. So I spent the days before I turned 22 thinking about how I should really probably get hit by a car. And then a few weeks later, after I’d missed the deadline to get my TBI, I started thinking maybe I should just actually kill myself. I know all this seems unreasonable, but I’m getting to the point. Just from knowing a bunch of other people with autism, I know that it’s not all that weird for me to have the kind of cognitive problems I have, but a lot of people don’t know that, even professionals. There’s no easy way to explain to people why stuff is so hard for me. I feel terrible. I feel stupid and lazy. I hate asking for extensions from professors, or help from disability services at school, and it’s really hard because I have to explain everything, and I usually feel like they resent me. I really hate the disability services person at my college, because in my brief dealings with her she’s made it really obvious that she doesn’t think I have any real problems--but I had to transfer my credits from study abroad, and I really needed help figuring out what to do, and if I didn’t do it I wouldn’t be able to graduate--so I arranged to meet with her. All I needed was for someone to sit with me while I made a list of everything I needed to do to complete the process; and she did that, but she was still really patronizing. (I’m actually not as paranoid as I sound; I know several people who have had bad experiences with her.)

Last summer, I worked at a sleepaway camp for disabled adults. I mostly really like working with other people with DDs, because it’s a more comfortable environment and I don’t have to worry whether anyone is noticing that I’m disabled, because I’m not the only disabled person there. I mostly enjoyed my job. But at one point, I had these campers who were older men with Down Syndrome and they would all get really confused when they were getting dressed and brushing their teeth and showering, and basically needed help staying on track for everything. Which is basically what I’m like, unless I try really hard and focus really hard. I wasn’t really able to shower easily, without getting off track, until I was probably 19 or 20.

So, it was really hard for me to remember everything I had to remember to help these guys get dressed, and stuff. I felt so incredibly incompetent and I felt like none of the other staff understood why it was so hard for me. I mean, most of them didn’t know I have autism, but even the people who I was more friendly with and had told--I mean, people just think autism means you’re socially awkward or something. So I was just getting so worn out, and I just couldn’t help feeling super jealous, and wishing I was more severely disabled like they were, so that it would be someone else’s responsibility to make me get dressed in the morning and take showers and stuff. And that if I couldn’t do something, people would just think that was understandable, and help me, instead of thinking I was an asshole, and I wouldn’t feel like I had to just hide it or lie about it because that’s the polite thing to do. So this is why I want a brain injury, or sometimes want to kill myself. Not exactly because of the cognitive problems, but because they’re not something I can prove, and I feel like a stupid person who’s probably just lying and being really lazy. I sort of hope that you’ll give me these tests and they’ll come back saying that I have the working memory of an 5-year-old, or something--like, I don’t even need to tell other people that, if I just knew that for sure, I’d be so happy.

But anyway.

Cognitive Problems--
shit for brains
i.e.:

it’s really hard to remember anything short-term. You can’t tell right now because I’m not in school, but usually I have a bunch of instructions written on my hand and on my computer keyboard so I can remember to do things. I try to keep assignment books or whatever, but it takes a lot of mental switching around to write down all the assignments, and it takes a lot to remember to look at the assignment book, so it doesn’t really work. So I put it on my computer and my hand because I don’t have to remember to look at them. As soon as I stop looking at something, it tends to disappear from my consciousness unless I try really hard to keep it there.

Also it’s hard to transition. Ever. It’s just really unpleasant to have to switch from doing one thing to doing something else, or to have my day go differently from the way I expected. For example, once I was really upset because a professor and the other people in a class told me that I would have to switch my work shifts to a different day, because the professor wanted to move the class to a different time. I didn’t know how to switch my shift because I don’t do things like that.

I just need someone to walk me through things, like, figuring out how to do stuff, but it’s almost impossible to ask someone to do that and that is why I sometimes want to kill myself--it’s not the fact that stuff is hard, it’s the fact that such stupid things are hard and it is so close to being easy. If it was just someone’s job to help me do stuff for an hour a week, my life would be completely different, but it’s not, so it’s not.

That is all I can remember right now, and it doesn’t really seem like a big deal--it even seems funny. And it is on the small scale. But if you’re actually in college and you can’t remember things and it’s hard to transition, and then you get to feeling anxious about all the things you’re trying to keep in your head, when the absolute most pleasant thing would be to forget them because you probably won’t be able to do them anyway, so you start cutting corners and dropping little things, because you don’t want to get upset; and you can’t stand to think about how things really are in terms of school, because you’re afraid you would get so upset you’d never come back from it; and you can’t really ask people for help because no one really gets or is trained for this stuff, and you don’t exactly understand yourself what is wrong...well, then, you just start thinking it would be better to die, not because you’re sad all the time or something, but just because it is the only easy answer to the question.

06 December, 2010

STORY OF MY LIFE YOU GUYS

me: okay listen to my letter to TVN.

Dear TVN,

My paper is going to be late--like hopefully it will be there when you wake up but it might come in the afternoon or the middle of the night tomorrow. Please don’t take off too many points. I don’t know if this ever happened to you when you were in college but sometimes I just get so overwhelmed and by the time I realize how paralyzed I am it’s too late to talk to the professor or get an extension or anything. Seneca says that when a powerful person like TVN shows mercy, it’s even better than when a regular person does it. I hope you agree.

Sincerely,

Amanda

roommate: I don't understand why you can't write your paper when you can write such a witty email

22 November, 2010

oh yeah so part two--on being vicious about yourself

So my former professor and advisor, Phyllis, has ADHD or something like that. She was a very nice person to have a professor partly because she would always do things like losing her coat when we moved to a different classroom, scheduling meetings and forgetting to keep them, sending emails saying "here's your assignment" but forgetting to include the attachment.

I feel so lucky to have met her because at the same time I was in her class, I was in another class with a professor who hated my guts. These are some explanations he gave to me and other students in the class:

I was "really weird"
I didn't use body language that made me look interested in class
I forgot to turn in a paper once (I had done it and brought it to class; I literally forgot to turn it in)
I was late to the first class because I misremembered when it started
I talked as if I hadn't done the reading (for the record I don't talk about reading I haven't done; I'm not...there I go again)

I would have ended up feeling like I deserved all this just because I had on two occasions forgotten to do things--not because I didn't care about class but simply because my working memory is super poor. But Phyllis's class was a place where I could feel safe. Phyllis cared a ton about her subject and her students, but she forgot to do things. Her class was a place where it was understood that a person can work hard and care, but sometimes not be able to do what's expected.

She is the only professor I've ever become friends with and I still see her sometimes even though she's retired.

Anyway, the last time I saw her she told me out of the blue, "One time you wrote me an email that said, 'I'm so stupid, I forgot to do this.' And I thought that was wonderful! It was so freeing! Now I started saying, 'I'm so stupid.'"

I was really interested that Phyllis said this because usually I feel under a lot of pressure from non-disabled people to avoid saying things like, "Sorry," and "I'm stupid." Like, I guess that people think they're being nice, but it just feels like they're trying to silence you. For someone like me who feels really required to check that I'm doing things properly, if someone just tells me something like what my boss told me this summer--"The only problem with you is that you keep thinking you're doing something wrong and it makes me sad!"--that makes me feel like the person would rather I handle any anxiety or guilt completely on my own, which makes it much worse, rather than making it visible to them by asking them if I'm doing something wrong or apologizing for real or perceived mistakes.

04 October, 2010

I just want to say this because it makes me so angry and I feel like not enough people have said it: disability services at college are fucking super, incredibly ableist. There was an FWD/Forward post last week where people started talking about this in the comments. But I just sometimes get so pissed off I can't stop thinking about it.

It's fucked up to have for example an entrance for wheelchair users that the wheelchair user has to actually make a phone call to have opened. (The other day I saw an elevator in the art building at school which said exactly that--there was a little phone next to it that said "dial [this number] on this phone if you need to use the elevator.") I think that most people who work in disability services would understand this is fucked up. But that's exactly what disability services are like, if not worse.

People have to prove they're disabled. They often have to have documentation stating that they are disabled that's less than five years old, or sometimes even less than one year old. For one thing this costs money, but for another thing, a lot of people with disabilities like ASD and ADHD don't find it super easy to run around getting a lot of documentation together.

We also don't find it easy to do things like apply for accommodation for every individual test we take, which is often a rule. On the FWD/Forward thread, a person with ASD and Tourette's was talking about how she basically never gets accommodation for her tests because she can't do all the things they require her to do in order to get accommodation.

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they're just a shitty person who wants to get a leg up on everyone else?

Second of all, explain this kind of bullshit (this particular bullshit is from here): Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally. In addition, the student's documentation must support the need for a service or accommodation in order for it to be approved.

Even though the person is paying to go to school and the disability services office and the professors are paid to help the person learn, the student must: find the proper individuals, have conversations, request accommodation (even if this kind of stuff is hard), find all their paperwork, bring it in, and most importantly initiate everything. Even if all this thought and travel is physically or emotionally wearing on the student. Even if the student just can't do this stuff at all and it never happens, because of the nature of the disability. Who cares.

I feel like there's almost a sense of glee. I feel bitter saying that, but that's how it feels: "come on you little wuss, it's not our responsibility to help you, it's your responsibility to jump through a billion hoops in order to be worthy of our help. And if you're too disorganized or tired or anxious to do that stuff, well, fuck you, we only want to help disabled people who have certain kinds of disabilities that don't affect their brains or their energy level very much. Special, magic, just-like-everyone-else disabled people (actually, we only want to help disabled people who are better than everyone else). So go fuck yourself."

12 September, 2010

Our growing and shrinking island

I got weirdly depressed because my friend was talking positively about the head of disability services at our school, who I sort of loathe. (Way out of proportion to what she actually did to me, which was three years ago, but it just was really bad, and I've gotten the impression that she is really great to students with Real Disabilities and not so good to students with Fake Disabilities--to put it bluntly.) The stuff my friend was saying wasn't really different from what I'd expect for her; the two of them had basically been talking about physical accessibility issues and how they suck at school, and how it's even harder now to get the administration to make things accessible because the two students who were full-time wheelchair users graduated and can no longer be invoked as an obvious example of how shitty things are. And she (the head) has now made the administration promise to clean up ice and snow which my friend is really happy about because he had a lot of trouble getting around last winter. (He's ambulatory but has balance problems.)

I think I'm not good at holding two conflicting ideas at the same time, though. So knowing that she works really hard to make school more accessible for kids with mobility disabilities (which it is admittedly not at ALL) makes me feel bad about the fact that I resent her a lot. I also feel bad about the fact that I'm so into "disability stuff" but I didn't even think about the fact that ice would be a problem for my friend. I think that partly because we're going through the MR-->ID shift right now, and also because there are so many annoying euphemisms like "special needs," "developmental delay," "Down syndrome" (used to mean all ID), and "developmental disability" (used to mean only ID), I have a really bad habit of using the word "disabled" when I'm talking about the issues I am especially interested and entrenched in--the issues of people with intellectual disabilities and autism spectrum disorders.

I don't feel good about doing that because I feel like that's exactly what people with physical disabilities sometimes do to us. And it's what some people who identify as allies of disabled people, like the head of disability services, do as well. (In fact I wonder if it's non-disabled allies more than people with Real Disabilities who have such a sense of what a Real Disability is.)

The first time I went on FWD/Forward, I remember being surprised when I read the contributors' descriptions of themselves. Mental illnesses weren't disabilities! Physical disabilities that were invisible weren't disabilities! How could this website be called Feminists with Disabilities, when most of these people weren't Really Disabled? My confusion soon turned into excitement and happiness as I started to feel like maybe, just maybe, I didn't have to apologize four hundred billion times for identifying as disabled. I've really been changed by the disability blogosphere, because I now see issues of ableism, disability, and accessibility as being much bigger and broader and more complex than I thought they were. I know this sounds depressing, but it really isn't, because I can see that many things that I once thought were Problems With No Name are actually related to disability.

However, I guess I also worry that as the definition of "disabled" becomes more broad, there won't be enough attention paid to the needs of people who use wheelchairs. I mean, it makes me really frustrated that I have to depend on my professors' goodwill in order to be successful*, and that I feel like I have nowhere to turn if I have a professor who dislikes me or judges my work harshly because of things related to my disability. At the same time if I do poorly in a class it's not the end of the world. And an infinite number of nice professors can't make campus better for a student who uses a wheelchair. It just completely sucks. I can sort of scrape by in a lot of ways because my impairments clash with people not buildings.

[*I would never, ever go through the disability services office because I know it wouldn't work. On a basic level I need not to be judged for not being able to speak well or understand unspoken rules about what an assignment is supposed to be like--something I can't ask for because a professor is either the kind of person who is going to resent me, or they aren't. Last year when things were really terrible, I asked for some extensions (I've probably asked for fewer extensions than a non-disabled person in the time I've been at school) and I asked to take exams in a separate room on a computer to reduce panic/discomfort. Which is not something that's a stereotype of autism, so I don't think the disability office would support me in asking for that if a professor refused to give it to me.]

I think I just feel guilty sometimes for being so angry about being erased from the mainstream understanding of the word disability. It's funny because to the extent that there is disability stuff at my school, I feel totally erased by that too because it's mainly people with specific learning disabilities. I just go through life feeling there are many things that I'll never be able to do, and I think that something like dyslexia or dyscalculia can shut down certain parts of the world, but sometimes I feel like there's such a small area that I can actually safely move around in and aim for. So I totally find myself mumbling to myself, too, "yeah, come back when you have a Real Disability." Except. You know. Is that ever valid?

29 April, 2010

tl;dr: a baby triumph

So I'm sort of bad at figuring out how I feel about things, or just how things are, objectively. This is probably due to growing up with gaslighting although I also think that not being able to identify your feelings is supposed to be normal for people with ASD. Although maybe it's normal for people with ASD as a result of gaslighting. Anyway. I recently said to someone that I can never tell if I'm going too hard or too easy on myself. And that's been a major issue especially for the last term, because I've been extremely fatigued and extremely sensitive to stress, with both those things feeding into each other, combined with the fact that of course I think it's my fault for being so lazy and letting myself get away with things. That last fact means that it's really hard for me to just state that I'm having trouble and not doing things wrong on purpose. And this is tied into my general inability to speak up about anything.

One small piece of the problem is my psych class. We're allowed to take the exams on our computers, whenever we want. This sounds like it would be good, but I got so anxious about the first exam that I took it at three in the morning without being done studying, just because I wanted it to be over. I got a 28% and so, in combination with other factors that are making me tired and/or meltdowny, I'm having to freak out about doing well enough on the other exams to get my grade up to a pass.

Then my professor found out that people had cheated on the exams, and told us that from now on we'd be taking the exams in class. I found this out last week, right before the third exam, and it made everything worse. I don't know how to start explaining the problems I've had on tests and exams my whole life, but basically I find it really hard to tell what the questions are asking. It makes me stressed out enough that it takes a lot of energy to answer them at all; by now I've figured out that I should just write way too much rather than risk writing too little or writing the wrong thing, but it takes a lot of effort to get all those thoughts out.

I really enjoy the experience of typing on the kind of computer I have now (scroll up if you don't remember what kind of computer I have). I love the noise and the feel of the keys and it makes it a lot easier to get out the things I have to write because I'm getting sensory reinforcement. It's different from writing by hand and it's better than any other kind of computer I've had or used.

My Amateur Prediction of What Will Happen

I am having huge amounts of trouble tolerating any frustration or discomfort + I have trouble understanding, remembering, and talking about certain kinds of science that are covered in this class + my normal test-taking problems - the comfort of typing on my computer = total mind explosion and a grade I can't afford.

Enter two people who I really, really love.

1. Ari Ne'eman. Ari is a person I talk to a lot and a lot of the time we have the following conversation:

Amanda: An aspect of one of my classes is really difficult for me as an ASD person./Someone I know said something offensive about disabled people./I think that one of the kids with disabilities I know is having such and such problems and their teacher isn't responding to it.

Ari: You should talk to someone about that.

Amanda: I can't do that.

Ari: But

Amanda: NO

Ari: But

Amanda: NO

(change of subject)

Ari isn't trying to make me do things I don't want to do; he just has a very different way of thinking about things. Basically, he flunked learned helplessness. His first reaction to this kind of stuff is to do something, and I don't think he has this reaction on purpose, but it's ended up as a situation where I'm like a mountain being eroded by the ocean (Ari is the ocean in this simile, if you were having trouble keeping up). He's not intentionally chipping away at me, but his presence in my life gives me a different idea of how a young disabled person can react to things.

In this case the conversation went like this:

Amanda: I'm scared I'm going to fail my exam because I like taking it on the computer and I don't think I can stand it without the computer.

Ari: You should get permission to take it on the computer as an accommodation.

Amanda: How is that an accommodation?

Ari: It reduces your anxiety.

Amanda: I don't have anxiety.

Ari: Are you serious?

(Ari reminds me of some things I have done. For example, remember how I took that exam at three in the morning without being done studying. And some other things. I conclude that I possibly have anxiety.)

Then I emailed my professor asking if I could take the exam on the computer. His reply was ambiguous and I thought he might be saying no. Ari said that if it didn't work I should go to the disability services office.

2. I have been well-disposed to this professor since he handed out a form on the first day of classes asking if we had any "special needs, quirks, or homicidal tendencies." I thought this was cool because it made disability a casual, light thing that was important but not scary to disclose. Also I just think he's weird, which is good. I only go and talk to professors who are weird, because by the time things are bad enough for me to talk to professors I no longer have the ability to act like I'm not weird, and if they're not weird they can get mad at me.

So yesterday I walked into his office and said, "Is it okay if this is a meeting about me being stupid and crazy instead of a meeting about the material on the exam?"

And he said, "Yes."

And I sat down and explained that I have autism but lately I have it worse. And that I'm having--"Can you have boring panic attacks?"

"Boring panic attacks," my professor repeated with a bemused expression. "Well, if you're having them, I guess you can."

"It's like--I feel really bored and distracted but then I realize that physically I feel like I'm scared. But the main thing is, I understand if I can't take the exam on a computer but this thing happens"--and I explained about not being able to tolerate things and about how the computer makes it a little easier. I was straightforward about sometimes wanting to scream, and my professor looked pained.

"Well," he said, "then...I can drop off a copy of the exam at the psych office and you can go into another room with your computer and open up a word processing document and don't open anything else. I think you should be able to print it out in the computer lab, but if that doesn't work, email it to me."

"Is--does this make things a lot harder?"

"For you or for me?"

"I mean, for you?"

"It's a very small change," said my professor. "If it helps you--"

Chicago Style is Oppressing Me

You may recall that I sometimes use "chicago style is oppressing me" as a tag related to academic problems I have. I'm making fun of myself but I also mean it. I do think that rigid ideas about how to do things can be extremely damaging to someone like me. For example if my professor had a normal reaction to the weird thing I said when I first came into his office, that would have impaired my ability to communicate with him. Because he didn't care that much about me saying something weird, or wanting a weird accommodation, I was able to take my test in an easier way. I wasn't prepared enough for the test, and I don't think I did well, but I did a lot better than I would have if I had had to take it on paper.

I know this isn't a big deal but it's a huge deal to me. I'd like to thank Ari for making me a little different, and I'd like to thank my professor for meeting me halfway, because I'm not different enough to fight yet.

21 April, 2010

Wait you guys, things are sometimes beautiful

Because people my age are really fantastic at pointing out exactly how much everything sucks, but not how much everything is awesome, I haven't yet written about something that happened to me two weeks ago in my nonfiction workshop.

Basically, in a passive-aggressive move against a kid in my class who made what I took to be patronizing comments about the way I talk, and also just as a result of this totally unbearable pressure that's been building all term because I've been so overwhelmed by school, especially this particular class because so much speaking is required and because it's such a long class, and also because of various classes this term where I've gotten to listen to professors and classmates explaining autism, I started writing an essay about being disabled to be workshopped in class.

I was leery of talking too much about "the movement" because I thought that it would seem strange and radical to people who haven't been exposed to it. I also have very little interest in explaining what autism is or how it affects me. So I started the essay by talking about my psych professor's declaration that "autistic kids want people for what they can get from them, not for who they are," and my non-response. Then I talked about Joe and how I feel that people like Joe are cut off from other people not just because they are nonverbal but because of the huge amount of distancing and othering pity that is heaped on disabled and different people by society. Then I moved out to talking (vaguely) about my identification as disabled and my alignment with disability rights, basically explaining how I feel unable to talk about this stuff in real life, how I feel invisible, how I feel like a disabled person is never expected to be in the room when disabilities are being talked about.

The process of writing the essay was really upsetting for reasons I don't have time to describe and I ended up feeling that it had been a bad idea to put myself in the stressful position of trying to write something like that aimed at my classmates. That's when I wrote sometimes the best self-advocacy is shutting the fuck up and I resolved to bite my tongue through what I expected would be a really uncomfortable workshop and never work on this essay again.

However, the people in my class were incredibly kind and sensitive, by and large did not tell me that they wanted more explanations of autism, that I should think about severely disabled people's parents' feelings, that I should describe my childhood, that people with autism can't talk, or basically anything I was expecting. One kid said, "I think this essay proves your professor wrong." Another said, when asked to give negative feedback, "The speaker ends the essay on a negative note by claiming that she isn't accomplishing anything, but that isn't true--she works with kids and has a blog."

I'm mega late for eating dinner with my friend. But I'm just trying to say I feel extremely different in class now, and better about my essay, and also proud and glad about "disclosing," as LF would call it. This week in class quite a lot of things were wrong with me, and I don't know how I would have been able to stay above water sitting at a desk for three hours if I didn't now feel so safe with my classmates, more free about talking badly, and more able to do stimmy things.

(Also, soon after I told her that talking in workshops makes me really upset, my professor decided to change the form of our workshops so that instead of getting only one turn to talk and being required to talk and being expected to cover very specific things, we are still required to talk, but we get several chances to talk about a few different aspects of the piece being workshopped, and we don't have to talk every time. I don't think she made this change only because of me, but it has made my experience of class incredibly different and I'm much more able to participate well and feel comfortable.)