About Me

I am always trying to work on the “about this blog” page because, since I am not a famous writer or performer, it’s just about the only opportunity I have to describe myself.  When I was 15 I was really into personal websites so I can attest that I’m not the only person who needs to make a whole page on the Internet just so I can tell you my favorite color of lipstick (Violet Frenzy) and my favorite Disney Channel Original Movie (obviously Mom’s Got a Date With a Vampire).

However, as I’ve gotten older I have less and less to say about myself.  Don’t mistake that for an increase in humility.  I just can’t do as much now.

When I was in college, I would have described myself this way: “I’m studying creative writing and Latin. I’m a cashier and I take classes where my teachers and classmates insult me so I can volunteer with disabled kids.  I write fiction and pop music, and I also make little art projects, like I take pictures of myself pretending to be a ghost leaving my body.  And I write a blog about disability issues.”

Now it’s more like: “I work as an aide for a fantastic person.  Occasionally I write in my blog and every few months I work on music a little bit.”

My phrasing has misled at least one friend into thinking that working for Anna is very difficult and this is why I don’t do anything else.  I don’t think working for Anna is hard and it’s easier, better for me, and more meaningful than most things I was required to do when I was in college.  But my life was much more physically circumscribed when I was in college and a lot of things were provided for me.  I was already having trouble with daily living things when I was in college, but there were a lot less of them.

The amount of work that goes into getting ready in the morning, traveling to and from my job, getting ready for bed, and trying to eat and shower an appropriate amount takes up at least as much of my cognitive ability as my job does.  I also can’t let myself space out at work because it would affect someone, which wasn’t really the case with my college classes.  I’m glad that I spend my days somewhere where my presence actually matters--one of the things that made me so angry and depressed in college was that I was required to exhaust myself doing things that didn’t immediately benefit anyone.  But having to be alert means that my job drains me of energy much faster than my classes did.

If I don’t have to be at work and I’m not trying to deal with eating or hygiene, I’m trying to force myself to focus on getting stuff done around the house so I won’t make life harder for my roommates by not doing my chores (which are already disproportionately tiny compared to theirs).  If I’m not trying to force myself to do that stuff, I definitely don’t have it in me to do anything but lie down and watch or read something in pieces with spacing breaks.  If a friend asks me to hang out, that’s usually good because I can let them do the focusing and make the decisions.  I can enjoy what we’re doing.  But when it comes to stuff where I have to focus--like writing or working on music--it never seems as important as lying down and trying to forget how much I hate moving and thinking.

I can tweak this to sound better or worse, right?  Oh the existential anguish of having to drag myself to the shower every four days.  I don’t need to be an PCA/writer/musician like I expected to be when I was younger.  I do some stuff I like and I feel like my job is meaningful and I do think that’s the most important thing.  Sometimes I still get upset because I feel like it’s unfair that I don’t feel better or get to worry about things less or do more of the stuff I’d like to do.

I came across the blog Dealing with Dysautonomia, which is really good.  Maddy writes about how she became sick when she was 14, and how she struggled with her identity when she couldn’t do the activities she used to identify herself with.  I don’t know Maddy and don't want to quote her without asking, so here is the post I'm talking about.

Sometimes I sit down and try to make plans for organizing my life in a way that would magically enable me to write and play music.  I really hope I figure it out, but the answer might be that there’s no figuring around not being able to do as much as I expected.

The point is I may have to just tell you my favorite color of lipstick is Violet Frenzy and leave it at that.

I’m Autistic.  I am 25 and live in San Francisco, in the United States.  Here’s the blog directory which is not up to date--the reason I made it was because I used to write about a lot of non-disability-related things on the blog and I wanted the disability things to be easier to find.  Here’s me and Jonathan Wilson being really cool.

(A young white woman, with a stuffed elephant on her shoulder, is wearing a shirt that says “?$#@&*!! YEAH MAN!")

The time I learned to say no

The Disney Channel has a series of spots called TTIs, short for "the time I...," where kids and teenagers talk about things that happened to them.  Most of the kids are not famous, but one TTI features a teenage Disney actress talking about her dyslexia.

She explains what dyslexia is and talks about how unhappy she was when she realized she couldn't read as well as other kids. Through hard work and pressure from her family to practice reading, she is now reading above grade level.  The TTI concludes: "Dyslexia makes things hard for me, but not impossible."

I'm not criticizing the actress--she may have been encouraged to spin her story in a certain way, or she may just feel that way.  But I wonder why when we try to give kids inspiring messages about disability, we always hide the possibility of impossibility.  When I was in elementary school, stories we got about disability pretty much were always about dyslexic people and how they had to "conquer their dyslexia" by forcing themselves to read for hours every night.  Eventually they got better.  It was never questioned that the kids in the stories would get better, and it was never questioned that they were obligated to add hours of work to their day for the purpose of doing so.

I'm not dyslexic, but I'm disabled, and I can do the impossible.  That is, if I work hard enough and make enough sacrifices, I can do any of the things that I would identify as impossible for myself.  But realistically those things are still impossible.  For example, if I have to stay up all night to do X thing, then it's technically possible for me to do X.  But like all people, if I stopped sleeping my immune system would start shutting down and I might fall asleep in dangerous situations.  I have to look at my life in perspective to say that it's impossible for me to do X regularly and it would be unfair for people to expect it from me just because there is a set of circumstances where I can do it.

It's taken a lot of bad experiences and support from other disabled people for me to start saying "I can't" and "That's impossible" instead of "That's hard for me."  I was always encouraged to think that if there's any possibility you can do something, you have no excuse not to do it.  Something being more difficult or stressful should not stop you from trying to do what other people are doing.  When I was encouraged to think I could do anything, no one seemed to consider what the consequences of doing anything might be, or if it might be better to put my quality of life first.

Sentiments like "Dyslexia makes things hard but not impossible" are intended as positive and inspiring, but to me they sound not like an encouragement but a guilt trip.  Can't disabled kids say that, yes, it is impossible to constantly work on dealing with their disability if they also want to pursue their interests, spend time with their friends, and just relax?  Can't they say, "Sorry, this is too hard--I'm going to play video games tonight like other kids."

Meanwhile, can't we teach kids to have compassion for other people's disabilities?  I'd argue that the constant procession of supercrips is not helpful in this area.  How is a kid who's raised on "The only disability is a bad attitude" going to be respectful of people who are too tired, too cognitively impaired, or can't see well enough to do what's expected of them?

I don't have a problem with this particular TTI, but I wonder when we will see an inspirational figure who says, "It's hard for me to read, so I'm pursuing a career where I don't have to read that much."  Or, "This is about the time I learned that if I accept my disability and make realistic decisions, I will be happier."  It's not what people want to say to kids--they think it's discouraging--but I think it's what kids need to hear, and I don't think it's discouraging at all.

Advice, movement, and the doctor

I don't respond well to certain kinds of advice on this blog, because when I write about personal stuff I'm usually just trying to give an example of what a particular thing is.  When someone tries to suggest solutions to something I obviously don't think there is a solution to, this just comes off like they're telling me I'm wrong and I don't know how things really are.  It's okay to flat-out disagree with an idea, but at least say so instead of giving me a (usually bad) suggestion on how to deal with a personal problem that I was just using as an example.

I usually do not talk about disability-related things to most people, because the majority of average responses are triggering to me.  I'm hesitant to say triggering since I don't have PTSD, but I guess it seems like a useful word because even though I think their responses are wrong, I know my reaction doesn't make sense.  I end up thinking about it at least all day, crying really hard for a long time, and sometimes doing stuff that isn't a good idea.

I can almost always avoid being triggered because I just avoid talking about these subjects with people I don't trust.  Unfortunately, sometimes it can happen even when people I trust just don't understand one small thing that I thought they understood.  It's so stupid that this happens because they didn't even do something wrong.

Anyway, a few weeks ago I got kind of worried because I started having trouble walking.  (I probably walk a bit Autistic but I don't have a noticeably different gait like some people with CP or neurological illnesses do.)

For periods of time, I started kind of stumbling forward or walking forward with one foot and dragging the other foot to the side.  One time, I actually couldn't stop walking and stand still and just stumbled back and forth while waiting for my friend to be ready to go.  Also, I started finding it really hard to move forward or up and was having to grab things and pull myself as much as possible.  At other times, I experienced a weird kind of sudden exhaustion where I would have to put my head down.

My idea was that this happened because I kept going places and doing stuff for three weeks without just sitting around and not thinking about things on the weekend (the walking problems appeared about a week and a half into this period).  As soon as I had a chance, I took a weekend to not move or do things, and since then, my walking is normal and most of my other moving is too.

I know that other Autistic people have things like this happen, but it makes me a little worried just because it hasn't happened to me before.  Also, this year my head has been involuntarily jerking to the side and dropping and rolling around and stuff.  I probably can attribute this to drinking a lot of caffeine, but both things make me nervous just in case they're a symptom of something.  If they aren't a symptom, neither of them really bothers me, but I'd like to ask the doctor about it just to know for sure.

I'll probably mention them to the doctor tomorrow, but it kind of sucks because I haven't told my doctor I'm Autistic and I won't be able to because I know I might get triggered if I do.  Since I can't explain that I'm under a lot of stress a lot and that it's not totally out of left field for me to have movement problems, I won't be able to give the doctor all the information about what's going on.

A while ago when I was posting about how I wished I could get help with things, a friend suggested that some mental health counselors are willing to help with cognitive problems.  This is something I would have to ask my doctor about to find out about, but that's something I won't ever be able to do at all because there's such a high likelihood of triggering things being said.

As a side note, sometimes I end up really upset when I go to doctors anyway because they give me instructions that I'm simply not able to follow.  I can't tell them that so it feels like I basically have no options.

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It seems like it's socially acceptable for "liberal" parents to say things like, "This is hard for me, I need time" as an excuse for saying offensive or hurtful things to their kids who are queer or transgender, and generally not making an effort to support them.  For some reason, this functions as a get out of jail free card to keep the parents from being seen as prejudiced or a bad parent, and I don't really think that is okay.

It's harder to actually belong to a marginalized group than it is to have your kid not turn out the way you were expecting.  Queer and trans people shouldn't have to deal with our parents being insulting and unhelpful on top of other things we have to deal with, and we definitely shouldn't be expected to act calm and patient when they're not even acting like parents.