Time gets scarier

I watch a lot of TV and by the standards of TV I have a really good life.  I have perfect friends and a job I love, and I even have someone I’m in love with.  These are supposed to be the important things.  Fiction doesn’t concern itself with getting dressed, eating regular meals, and showering, except incidentally.  These things are supposed to be so boring that they blend into the background but these supposedly boring and insignificant things are making my life suck.

When I was growing up all I wanted was to be grown up and live on my own.  Mostly I wanted to be out of school so I could be in places I chose and do things I chose, and especially so that I could meet people I could actually date and be friends with.  When I was 17 I would struggle to make a list of anyone I considered a friend even slightly.  Now I can’t imagine worrying about that, but I’m constantly nostalgic for being 17 because I didn’t have to pay attention to where I was, what I was going to eat, or what I was going to do.  When I was 13 I couldn’t make it through the day without being told I was an ugly freak who should kill myself, but I had unlimited mental freedom to read books, write stories and songs, and experience everything as intensely as I wanted.  Now that I get to have friends and not be bullied, I spend half my time wondering if it's worth it.

For one thing, I don’t read or write much anymore and I read much slower than I used to.  I think it’s because I have to keep myself a little detached from everything.  If I do anything too much, I might forget to sleep, eat, wake up, go to work, etc.

My relaxation activity (which takes up more or less of the day depending on how stressed I am, but always takes up a lot of the day) is to sit propped up with pillows, reading multiple things on the Internet at the same time, sometimes gchatting with people, sometimes making short tumblr posts, and sometimes watching TV in 2- or 3- minute intervals.  I usually do this with an online timer open so I know how much time is passing (even if I’m not planning on stopping in an hour it’s still good to know that an hour has passed).  I eat a lot of my meals during this and in the morning I usually get dressed and put on makeup without getting off the computer.

It might seem like it would be more relaxing to sit and read a book but it actually would be stressful because I could lose track of time.  Once when I was little I remember crying because I accidentally read all day and it scared me that so much time could pass without me knowing it.  But at least back then someone would find me if this happened.  My housemates are nice but keeping track of me isn’t their job.  Anna’s parents would call me if I didn’t come to work but by then I would already have done something wrong.

When I clean, do dishes, or do anything that can’t be done while sitting at the computer, I watch TV or listen to a podcast.  Otherwise I won’t be able to focus because I’ll be afraid of spacing out.  If I watch TV or movies with other people, I get stressed if I don’t do something else at the same time.  But it makes everyone feel weird if I’m on the Internet so I try to eat, drink, or play handheld video games.

I stopped driving because I was a bad driver and I was suicidal then, which was a bad combination.  But I’d be hard pressed to start again even if I could learn to be an okay driver, which I admit is possible.  Riding the bus or train is the only time I can actually read a book or write something important or just experience what's going on around me or in my head.  The bus always goes the same places and I don’t need to work hard to know when the ride is over because I ride it every day.

(Cross country Greyhound trips are a spiritual level experience for me because the ride doesn’t end and I don’t have to focus on anything practical for days.  Even if I arrive dirty, hungry, sick, and tired, I’ve still gotten to space completely, for long enough that I stop even feeling nervous about it.  Sometimes during the Greyhound ride I end up figuring out something or writing something I've been wanting to do forever.)

But I’m not intending to say it’s hard to work, do laundry, eat regular meals, sleep, shower, get dressed, and put on makeup.  A lot of people can’t do those things without parents or staff and here I am doing them consistently, so by definition it’s not that hard for me.  It happens.

What doesn’t happen is all the less immediate things.  For example, to cash my paychecks I can either get up early on a work day or go to the bank on one of my one or two days off a week.  I mean to do this almost every day but it usually takes at least a few weeks.  Since I don’t cash my paychecks very often, I lose them sometimes.  In theory I can get them sent to me again if I talk to someone and explain I lost them, but this isn’t something I even put on a to-do list because it’s not likely that I’ll do it and it’s a lot less immediate than other things on the list.  Right now there is at least $100-300 that I should have been paid and could get but it’s not realistic.

Anna’s dad Richard coached me through getting about $800 when the agency that manages Anna’s services sent my paychecks to the wrong address several times.  $800 is enough money that I can’t pretend it just isn’t important, but there’s no way I would have been able to get it without help so I guess I would have ended up trying to pretend that I have more important things to do than get an entire month's rent.

Richard is also helping me sign up for the San Francisco healthcare program.  Even though it is available to everyone in San Francisco, I wouldn’t have signed up on my own.  (Wouldn’t have been able to?  Just didn’t want to becaue healthcare is stupid anyway?)  It isn’t hard but it took several months because he had to walk me through everything and he is a human who has to keep track of his problems and 50% of Anna's problems, and is also the kind of person who helps multiple unrelated people with their problems.  If I could just take care of my entire self, I could have signed up months ago.

Except it’s just a waste of time because when I lived in Cincinnati I had really good benefits but I never went to the doctor or even learned how to use my benefits card.  Six months ago when I was visiting my parents, my mom decided to organize and pay for me to go the dentist.  The dentist found 7 cavities (all hidden on the inside of my teeth, which is a great metaphor for my toxic personality.)

The dentist also noticed that I have a skin condition covering most of my face and ears.  I tried to get her to stop touching my face by saying, "It's okay, I just have messed up skin."

"Don't say that!" she admonished me.  "It looks like contact dermatitis."  (It doesn't, because it's not.)  "You should go to a dermatologist.  You're a beautiful young girl, you shouldn't just be saying you have messed up skin."

So let’s pretend I have a health plan that covers this and I get myself together enough to make an appointment with a dermatologist and I get myself together to go to the appointment and I don’t cry when I have to talk about the fact that my face looks like a mask, and I can afford all the medicine and it’s going to work if I use it.  Am I going to be able to deal with adding a bunch more things I need to do every day?  Am I going to use it if it has side effects that require me to put drinking huge amounts of water at the top of my list of immediate needs? What if it makes my face feel weird and I have to spend time getting used to it several times a day? Fuck that.  Then I cannot go to work, get dressed, shower, do laundry, eat, etc.

The agency that manages Anna’s services has yelled at me and made me cry for not being able to talk on the phone by myself.  Richard had some plans for me to not be involved with them anymore, and he recently found out that the regional center could pay me directly and I’d make more money, but I’d have to deal with all the taxes that your employer usually figures out for you.

As soon as he unveiled the new information, I started thinking too hard to talk.  Eventually I said: “I wonder if I would make enough to quit my second job and then I could use the extra day in the week to figure out the taxes."

“You wouldn't have to do that.  It’s simple,” he said and continued basically being kind and suggesting how I could find someone to help me with taxes.  “This could be really good.  You could make more money and you could quit your second job and have the day off to play with dogs.”  I'm trying to start volunteering at a dog shelter.  Did I mention he is being super nice and has no reason to help me with the 400 things he's helped me with?

But the whole idea of the taxes made me get wary because it seemed like too much work, and then I got sort of shaky-sad, which is a feeling I usually only have when I look at my skin.  Be careful, be careful, it's not realistic, it's not realistic, be careful.

Rabbits

When I worked in an institution I was afraid that I secretly liked institutions.

I was afraid that I liked the fact that I had a very specific job, that I would get told off for even trying to plunge a toilet myself instead of calling the person whose job it was to do that. I was afraid I liked all the alarms and call lights that worked in the same way, the small number of kinds of beds where once you knew how to operate a few of them, you knew how to operate them all. I was afraid that I liked every bathroom having the same color washcloth and the same brand of shampoo.

Obviously I am Autistic so on the surface some of this makes sense, but it's also something other than that. I was worried how deep staff infection went and worried that scheduled lives had started to seem normal to me.

I've been working in "home care" for a few weeks now and it's definitely hard for me to have to do stuff other than physical support when I have trouble cooking and cleaning for myself. But it's incredibly worth it.

I don't think I had really thought about the distinctness that a person's own home has. Not just the space but the way they do things, and how their ways and the space interact.

I love messy rooms full of dirty dishes, tables of grandmotherly objects like wind-up Easter rabbits and Christmas trees that are up all year. I love obsessively organized rooms too, with labels on everything. I love getting to work with someone who hasn't been moved across the long term care hall to a different room with a different stranger, but is living in the house where she raised her kids.

I feel very cheesy describing it this way but it does feel like my function is to be part of the machinery that helps someone keep being themselves, and that's really exciting.

last chapter of a very long story

Dear L,

I need to tell you something. I never completed the staff review form this summer because I was afraid that it would be obvious who I was even if I mailed it in anonymously, and that if I said what I thought, I would not be asked to return to camp. This winter, when I realized that I had not been asked to return anyway, I decided that I would probably write to you and tell you this.

I don't expect you to answer this but I do ask that you read it carefully and think about what I have to say, because I think that camp will be a safer and better place if you read it. I know you're busy with work and preparing for the summer, and that you may not get to it right away. But I have faith that you will read it. Thank you.

As you may or may not know, I was born with a disability. When I was growing up, I never went to a camp like [name of camp] and there were not many social groups for kids with my disability. When I came to camp in 2010, it was the first time that I was able to meet and get to know people with disabilities and this is one of the reasons that camp has been so important to me. Both summers, I told some other counselors that I am disabled and they were supportive, but I generally do not like to tell employers this for fear that they will assume I am not able to perform the functions of a job because of my disability.

In the first session of camp in 2011, a fellow counselor told me that he considered our young campers to be "brats who needed discipline," and that when his campers were annoying him, he wished he could hit them. He was angry with the campers for doing things like becoming upset, crying, being mad at him, or not responding to commands. I tried to defend the campers, but he said that he didn't see why I liked them so much because they were "just brats," and implied that I was bad at my job because I didn't share his views on how to discipline campers. (Through other staff, I later found out that this counselor would do things like bringing food to his cabin that the campers were not allowed to have, and eating it in front of them.)

After having this type of conversation with him a few times, I felt so scared by him that I no longer wanted to be around him. Given the attitudes he expressed toward people with disabilities, I didn't feel safe telling this other counselor that I am disabled. We had become friends during orientation, and he didn't understand that (from my perspective) we could no longer be friends. He expected that I would still want to spend time with him during breaks, but I now tried to avoid him, though I tried not to offend him or make it obvious what I was doing.

I found the situation so upsetting and awkward that I didn't know what to do. I strongly considered quitting camp and leaving immediately. It was hard to stay, but I chose to stay because I cared about my campers and because of the effects on the workload of other staff if I were to suddenly quit. When other staff would have conversations about this counselor, I would participate in them because I was so upset by the situation. I know that this wasn't a good course of action and I'm sorry for talking about another counselor when he wasn't there. It was wrong.

But, when I was able to talk to an authority figure about what happened, I felt like I was in more trouble than the person who had expressed a wish to be violent toward kids with disabilities. I had actually imagined that this counselor might be fired, but my concerns were not even acknowledged, and I did not get the impression that he was ever told his behavior was wrong. Instead, I was told that I shouldn't have "talked about him behind his back," as if it was just an issue of the two of us not getting along. (In fact, we had been friends up to that point. I didn't have a personal problem with him.) I was also told that I should have confronted him directly about why I was upset--but as a person with a disability, I don't feel safe confronting someone who acts so hateful about people with disabilities, and besides, I had already tried to talk to him about it several times.

This was a tough experience that I was really disappointed by, but I got over it and had a great time at camp. I worked hard and dealt with some challenging situations, like being a float in session three and being given responsibility of a very high-need camper in the middle of session four, when D quit. I think that I dealt with these challenges well; even when I was stressed, I never let it affect my positive relationship with my campers. I think this is the most important part of working as support staff, especially with vulnerable populations.

However, I felt like I was seen as a troublemaker after the incident in first session. Several times I was told off for supposedly doing things that I hadn't done, like smoking in camp buildings and disregarding the safety of campers. These things were not true, but the conversations about them always occurred in a public place and were very brief, so I rarely got a chance to explain. I didn't want to arrange a meeting with you to explain why I felt I was being held responsible for things that didn't happen, because it seemed like making a big deal out of nothing. But I knew that you were probably forming a bad impression of me, and I wasn't surprised to learn that I am no longer wanted at camp. I'm incredibly sad to get confirmation, but I am not surprised.

I know I am responsible for what happened because I should have addressed this while it was going on. I can't change it now. But it would mean a lot to me if you would keep my comments in mind when dealing with other staff and campers in future summers.

Thank you so much for reading all of this.

Sincerely,

Amanda

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.

So I'm back from working at camp and I have been feeling more and more that I don't want to be staff for people with DDs--I was going to say more on this later, but why don't I just tell you about it now. I wouldn't pass up an opportunity to work with people with DDs if it fell into my lap (I wouldn't pass up any job if it fell into my lap obviously), and might volunteer if I can find any easy/convenient way to do it. I want to return to camp every summer for as long as I can, because there are some campers I consider friends and can't have a long-distance friendship with because they can't write/read/talk on the phone. But I don't particularly aspire to have another job with that population. What I'm thinking right now is that I'd like to do personal care stuff in a hospital, which might include working for some people with DDs, but wouldn't primarily be defined that way. It is the definition that really gets to me.

I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.

Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.

I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.

Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.

There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.

Because of that my old ambitions can never really work out.

some disabled staff person fragments and facts

So I’m working at the summer camp I worked at last year, which is a sleepaway camp for teenagers and adults with developmental disabilities, and it’s reasonably progressive and all that. I mean, very, probably, I should be grateful.

But Disabled Staff Person is just hell. Always has been always will be.
2.
I’m crunched for time and if I try to write a really long well-thought-out post about why this is, I’m afraid I might never finish it, so I will try to outline this briefly. I think it’s really weird that heterosexism and cissexism are commonly used words but that there seem to be no equivalents for other kinds of oppression. On the one hand it bugs me when people use words like heterosexism and cissexism about situations that are clearly about hatred of ssa and trans people; I agree that words to describe oppression ending in -phobia are problematic and should probably be replaced, but words like heterosexism imply the problem is about normativity and kind of erase the impact of actual hatred and violence and discomfort and fear.

But normativity also blows, and one of the most frustrating things about it is something that’s also one of the most frustrating things about being disabled in general--the feeling of not just pain but being sure that your pain isn’t really so bad and shouldn’t even count.
3.
So during training for camp, we learn about disabilities obviously, and we sit there and someone goes, “So does anyone know someone who is autistic? What can you tell us about autism?” and someone else goes, “Well, I was an aide for a little girl with autism and they don’t like to be touched, like they really hate it.” This one guy even says, “Well, all the autistic people I know really hate the taste of ground beef.” Both these things are not at all universal and I find that the stereotypes about touch, in particular, can lead to a lot of problems. But even if they were saying perfectly accurate things, this is the most uncomfortable room for me to be in. I learned about autism not because I saw it, but because it was never outside me.

I can’t count how many times I have been subject to this kind of assumption, either in an able-normative group like in the above example or in a comment specifically directed at me--”oh, my daughter is interested in autism just like you are,” or the classic “good for you, it takes a special person to do that kind of work.” Clearly I cannot be interested in autism as something to “get into,” as it’s just always there for me to look at or try to escape; and I’m no more special as a counselor for disabled campers than non-disabled counselors are at a mainstream summer camp. But no one really considers that they might be directing their standard-issue comments at someone for whom what they’re saying doesn’t really make sense.

Sometimes I even get these comments when the person does know I have autism and probably would understand if forced to confront it that what they said is inconsistent. People also perpetuate able-normative environments when they know I have autism (like my professor who asked the class if any of us knew a person with autism who was in college). I guess they keep those two clumps of thoughts, “Amanda is disabled” and “disabled people are Other,” carefully spooned on opposite sides of a plate. The clumps never touch. They don’t change.
4.
I believe you always regret telling. There are exceptions, like Liam and Noah, but definitely no one I have worked with or for. Obviously everyone knows horror stories about people who were suddenly considered unfit for a job simply because their superiors found out they had a stigmatized diagnosis, but being stiff upper lip I’ve never had occasion to experience this. What happens to me is quite small: I work out that someone will be okay, and I tell them, and it seems okay; or I have worked out that someone will be okay and I consider telling them because I feel close to them or I think it would be in some way relevant to something we’ve talked about. Eventually, through the accumulation of offhand comments and reactions I realize that while this person is more okay than most non-disabled people, the chasm between their outlook on disability and a disabled person’s outlook is, well, not massive, but no less galling for that.

If I’m lucky, the first piece of evidence I get is the person’s selective memory. I mention that I have autism and they act all surprised even though I already told them. Or I make a comment that has certain implications when made by a disabled person, and they respond as though it was made by a non-disabled person. This is kind of a cool situation because just as I learn that the person isn’t really so “okay,” they tell me in the same breath that they don’t remember I’m disabled--so I can just slip back under the radar, fuck yeah.

Or if I’m lucky, I still haven’t told them and then I hear them say something about how “fascinating” and “textbook” a camper’s stimming is. (I see your “Aww but she’s in school, that’s just how people act when they’re in school” and raise you a “I’m not saying she’s a bad person but would you want to be around someone who treats the way you move like something on the Discovery Channel?”)

If I’m not lucky, someone knows and I know they remember and accept it as a consistent part of me which is swell, but then I start realizing that they have a certain lack of faith in the capacity of disabled people to perform tasks and come up with their own ideas. One time this happened with someone I worked for, and the chill of knowing that despite their stated anti-ableist beliefs they probably wouldn’t have hired me if they’d known made me sure I never want to tell an employer about it again. After all someday I’ll need a reference.
5.
You probably know this if you know me but for some reason I didn’t put it into words until a few days ago--my most surefire trigger to get in a state (crying, mania, self-injury/being suicidal) is being made to feel that my disability isn’t real, isn’t visible, or isn’t recognized by other people. In fact it’s hard for me to remember if I’ve had any states in the last year that didn’t have that at least as an aspect.

Last week one of my coworkers, who I had until then considered a friend and vice versa, told me that he thought campers who had meltdowns were “brats who needed discipline.” After unwisely plodding through a conversation about this topic, I ended up lying in bed for hours sobbing and thinking about stabbing myself with the scissors in my backpack (which I only didn’t do because I was sharing the cabin with three sleeping disabled kids). At maybe two I wandered outside my cabin and stood next to one of the camp bathrooms and called my best Autistic friend, who had to deal with my speech which was kind of in pieces. I was upset because what this guy had said to me had hit my trigger point, but also because I couldn’t talk to other staff about it. I mean, I did. I’ve contributed to this guy being unpopular by repeating his comments, because I really wanted to say them and have someone else say they were bad--and everyone did, but for other staff it’s not bad on the same personal level, it’s a professional disagreement, and ultimately I’m just one of many apparently non-disabled staff getting into some non-disabled staff drama.

Whereas for me it’s not about disliking him in a general sense, but actually feeling terrified and threatened; and almost getting sick from the distance between how kind and friendly he was to me (someone he thought wasn’t disabled) and how that kindness and gentleness apparently gets lost when he looks at a kid who has meltdowns or wanders or doesn’t listen to him.

Counselors have been met with and given a talk--no more gossiping about each other, and if we criticize each other we should do it directly. We’re supposed to move on from the drama. (Who is the we that is going to move on?)

That’s all for now. Fuck my life.

Fallacy Week: The Harder Fallacy & The Uncomfortable Fallacy

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”

Fallacies of relevance can be very difficult to respond to for several reasons.

1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.

I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?

In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.

The Harder Fallacy

JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.

Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”

(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad’” rule consistently, and only apply it to stigmatized groups.)

The Uncomfortable Fallacy

MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.

Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.

(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)

Disabled Staff Person

I think I've mostly written about being a DSP in terms of identity and also aspects of disability that aren't related to impairment, like movement--basically that it is disorienting to always be assumed to be non-disabled or be someone who moves/acts normally because you are staff, especially but not only when staff have an insulting or patronizing attitude toward the people they work for and expect you to share in that.

However, there's obviously something else that makes a DSP different from other staff people, and that is impairment. While I do think the assumption that staff people are non-disabled often comes from just general...um, ablenormativity? is there a word for that?...there's also a more solid reason for that assumption, and that is that staff are supposed to be helping people do things they can't do on their own. So, if you are a DSP (unless your disability is absolutely unrelated to your client's disability, like you have paraplegia and they have schizophrenia) you may sometimes be in the position of being expected to help someone do something that it's hard for you yourself to do without help.

Which kind of begs the question: are DSPs good staff people (assuming there is some impairment overlap between staff and client)? Should DSPs be staff people?

Well, let's try to think first of all what it means to be staff. Let's say there are two kinds of staff: staff and aides. I tend to think you should think of yourself as an aide (it's a word I prefer but I'm not sure if I deserve it). To me the relationship between staff and client is that the staff person has authority, usually because they work for someone else more powerful, and they try to get the client to follow rules. The relationship between aide and client is that the aide's job is to help the client do things that they need or want to do. Depending on the impairment, like if it involves memory problems, an aide might say something that sounds staff-y like, "Hey John, it's time to take a shower," but there will be a different motivation and the aide and John will have discussed when John wants to be reminded to take a shower.

I think impairment matters more if you are an aide. Since staff/client is mostly about staff making clients follow rules, a lot of the things the staff has to do are pretty random and have nothing to do with impairment. In some cases, you could actually switch the client with the staff and the client could perform the staff's job pretty well. For example, at the summer camp where I worked it was a rule that campers (who were mostly adults with intellectual disabilities) couldn't serve themselves at meals. Obviously some people actually did need help serving themselves, but mostly I was sitting at a table asking a bunch of people if they wanted carrots who, if not for the rule, could have just gotten some carrots themselves. And this completely artificial rule added all these dimensions to my relationship with the campers at my table, which was weird.

There's also the fact that having a good relationship with clients becomes more important if you are staff. If John and his aide Sarah don't particularly like each other, it's not any bigger a deal than someone not liking one of their coworkers. They can just be polite to each other because they're both getting what they want (Sarah is getting paid for doing her job, John is getting support he needs). But if Sarah is staff--i.e. she has to get John up at seven every morning to ride in a van to the sheltered workshop--you'd better hope the two of them are really close because John is likely to be pissed off at her a lot of the time.

No one does their job right all the time, so I feel like the measure of whether someone's good at their job is just whether they're good at the majority of the things they're required to do. Let's say I'm an aide for someone who constantly forgets what they're doing from one minute to the next. I've mentioned how extremely difficult this is for me because, well, that's what I'm like except I guess I'm slightly above the line where I get staff for it. I am going to suck at helping this person dress, shower, etc.--if I'm this person's aide I'm basically going to suck at my entire job. (I also know from past experience that I start resenting the fact that if the person doesn't get dressed etc., that is considered to be my fault not theirs, whereas in my own life if I don't get dressed etc., that is considered to be my fault too; and stuff like that.)

However! If I'm this person's staff person, I could be great at my job. I can do a bunch of random easy stuff that my employer inexplicably requires me to do instead of letting the client do it. I also--and yes I feel very creepy saying this--am very good at convincing "non-compliant" people to do stuff, and calming down people who are upset. So my success rate at doing the tasks required of me suddenly goes up from, say, 50% to 90%, in the change from aide to staff person. I become competent, for some very dumb reasons, and at the cost of someone else's freedom.

I think it's very important to explore these facts because there is not very much writing about being a disabled staff person (let's include any kind of figure who offers support and can abuse power--teacher, psychologist, etc.) for disabled people. I have to figure this out for myself. And I think just as non-disabled people assume all staff are non-disabled, it seems like disabled people kind of do too when setting up the staff/disabled relationship as simply oppressor/oppressed.

So let's be clean about this.

1. I don't know why non-disabled people choose to become staff. Maybe they think it will be easy because they have someone disabled in their family who they get along with. Maybe they do it out of charity. Maybe they just think it's fun. Maybe they couldn't find another job.

2. I decided to be staff because I am disabled and it seemed like the only safe option. If I work in environments where no one is disabled, then I end up feeling under a lot of pressure to pass and I feel depressed and isolated, and end up experiencing the whole dissociation and self-injury swarm of awesomeness. I'm also not good at a lot of normal jobs because I can be very slow and don't think about big systems very well. Being staff not only frees me from a lot of these problems, but often provides me with the experience of getting to be around other disabled people, which makes me calmer and happier. I don't feel that I have another choice but to do this kind of job.

3. But it's very, very important for me to think about the ways that my attempts to protect and look after myself can damage other people. I wrote a post addressing some semi-related issues a long time ago--mostly about how I prefer working in segregated environments. Now I find myself thinking about how I prefer (for myself, if I resolutely ignore how it affects other people, which I can't) being a staff person rather than an aide.

So where does all that leave me?

I think there are two directions I can go in. One is to practically accept that I could easily contribute to fucked-up situations (either contributing to oppression by being staff, or contributing to someone's life being a little worse by being a subpar aide), and to decide that I will always avoid those situations by:
    a. being an aide for someone whose support needs are primarily physical, emotional, and/or communicative, rather than cognitive
    b. being staff (i.e. an authority figure) in an environment where I don't think it's wrong for me to have authority--for example, working with kids instead of adults

The other direction is to argue that maybe I actually am a good aide for people who have my kind of impairments, even though I suck at some stuff, because I have more rapport with them and am good in emergencies or something, and that that should outweigh my drawbacks. But I don't know if those things do outweigh them. Emergencies don't happen enough to really become the kind of task that can change your success percentage from 50% to 90%. And like I said--although I wouldn't want to be an aide for someone I didn't click with, and wouldn't keep a job like that for long--I think that getting along with clients is awesome but it should not be part of the job because if you need to use your bond to get them to do something, then there's something wrong with the job. So I will go with the first option.

Next year I'm planning to work as a school aide for kids with disabilities (don't get confused by the terminology, this is a staff person job), and I may keep doing that for a while to get my head straight and figure out what else is okay for me to do. Before you ask, "But Amanda, why don't you just apply to a place that gives people aides, and tell them that you have a disability and you need these kinds of clients, or if you have clients who have certain kinds of impairments, you can only work with them on certain things?" I'd like to remind you that this blog is not a comedy club.

ambitions

I know I don't really need to decide now (or ever, I can bounce around) but I think a lot about job stuff after college and what kind of things I want to do.

I think something I've been realizing is that I may not be equipped to be support staff for adults who have ID/ASD. This occurred to me during the third session of camp when my brain stopped dead after micromanaging three people's showers in a row. I am a person who is mentally able to shower, but it's only been in the past few years that I've been able to do it well, without becoming spaced or having to use timers and write directions on myself. Even though I can do it now, I guess the foundations are still shaky enough that I have a limit, and don't have enough of that type of function to spare on other people who have similar problems. I'm just not able to do that kind of job long-term, and that makes me angry and sad.

An obvious idea would be to work in a school because there would be a fixed schedule and I could help people in academic areas where I'm not impaired. But I guess what bothers me about that is I feel like so many (non-disabled) people get excited about "special needs" kids because they think they can just waltz in and make the kids not be disabled anymore, especially in the case of autism. Or because they think that kids with disabilities are really cute and interesting--while being creeped out by disability in adults. These kinds of attitudes have always made me want to work with adults and not kids or teenagers because I feel like adults with developmental disabilities are just erased and devalued and the people they end up having as staff are not serious about what they do.

At the same time, the fact that most people who work in special ed are all Nondisabled Person's Burden about it isn't really a good reason not to work in special ed. And my decision to work with adults or kids doesn't affect the stigma against adults so "I have to work with adults" is kind of a dumb principle to have.

I'd really like to end up working with people who have "multiple disabilities," which I think is a really weird term. Last spring I got to spend some time in a class of preteens and teenagers some of whom had that label, and I felt like there wasn't enough of an organized attempt to engage them and develop communication. I mean, I'm not denying that a lot of people with the label probably really do have mind disabilities as well as physical ones, but I just think it's ridiculous to act like you can assess someone's intelligence who doesn't have a communication system. If I had the choice I would really want to do nothing but work on AAC with people all day, because it's so important and I think I'd be good at it, but I think that's sort of a big deal job that you have to go to grad school for and make your own schedule which doesn't seem workable for me.

Obviously I write a lot about being a Disabled Staff Person but it's usually more about identity and about having movement and communication things in common with clients/students that the other staff don't have, and how that is a weird experience. But the other part is that sometimes I wonder if I just am too disabled to be much good to other disabled people. When the person I'm supposed to be supporting doesn't need much more help than I need, or needs kinds of help I wish I could get, it ends up being sort of disorienting and occasionally making me jealous since I'm "high-functioning" enough to be expected to direct myself in daily living when I sometimes barely can.

In Can the World Afford Autistic Spectrum Disorder?, Digby Tantum tries to say that people with ASD are more wise, or creative, or something, because we figure out pretty early on that there are some things we want that we will never be able to have. And sometimes I do manage to convince myself that it's some kind of spiritual gift, but, well, usually not.