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Dec. 19th, 2014

After the Happy Ending

This entry contains spoilers for Disney's Tangled.

So what happens to Rapunzel after she gets her happy ending? She's out of the tower where she's spent her whole life. Mother Gothel is long-overdue dead and dusted. She finally gets to meet people. She gets to have her birth family. She finds out she's royalty. The guy she loves just proved how much he loved her. What could be better? Roll credits.... right?

But things aren't so rosy for the princess, are they? She's a sheltered child who's just been thrust into the monarchy. Her entire life, she's had parenting based around guilt and fear from a foster mother nearly as isolated as she was. Oh, sure, she's charismatic enough to talk an inn full of rogues into not killing her escort, but is she going to survive being the "lost princess" that everyone longed for? She's lost her specialness; the hair that heals people has been cut. Sure, her boyfriend cut it off to keep Mother Gothel from taking her away and, presumably, keeping her captive for the rest of her life; it's not like she was going to be able to heal anyone with it to begin with. But she still has to live with the fact that she's no longer a special, magical creature; she can't solve the pain of the world by wrapping it with her hair and singing a song. For Rapunzel, the world suddenly got a lot more complicated--and all the skills she learned to deal with her captivity are suddenly useless.

What now?

I couldn't help thinking about how very much this story is like my own, and like that of many people who have survived trying times. I survived an abusive childhood, a stint in a cult, two hospitalizations; I've been expelled from school, fired from my job, and been without a home to call my own. I too had a childhood built around guilt and fear, and I too have lost my specialness, which for me came from being a precocious, gifted child, now that I'm a thirty-one-year-old still trying to get a college degree. And even though I'm free now, with a new haircut, all the skills I learned growing up were skills that help a person survive captivity.

I took it for granted that I wouldn't be allowed to make my own decisions. Now that I'm free, I don't know how. I thought of "fun" only as something you snuck when your keepers weren't looking; now that I'm free, I can't enjoy myself without guilt. What I ate, when I slept, when I did chores, were all prescribed for me; now that I'm free, it's a full-time job just to remember to do all of those things. I learned how to pretend I wasn't disabled; now I don't know how to use the help I'm finally getting. I escaped bitterness as I learned how to care about others, but I never learned how to care about myself. I survived captivity, but can I survive freedom?

This happens to a lot of people--people who come out of institutions, out of prison, out of cults; people who get out of poverty or grow out of an abusive childhood. When you're trying to help people in captivity, it's not enough to just get them out of their respective jails. To really become free, a person has to learn how to live in freedom. It's a difficult lesson, one I haven't yet fully learned.

Nov. 29th, 2014

We're All a Little Autistic

NT toddlers flap their hands.
NT teenagers love roller coasters.
NT adults are shy.
NTs are late talkers.
NTs misread each others' intentions.
NTs find perfume, loud music, or wool sweaters to be unbearable.
NTs stutter, fidget, and get burned out.
NTs can even have meltdowns.

So is it true that "we're all a little autistic", even the most neurotypical of us? Yes and no.

People with an autism diagnosis have one for a reason. Usually it's because, in some or all environments, throughout some or all of their lifetime, they have had trouble doing things that are expected of the average neurotypical. Their traits are severe enough to cause disability. If they weren't disabled, they wouldn't need a diagnosis.

Still, autism is not an alien thing, however much it's stereotyped that way. The statements at the beginning of this article are all true. NTs can have autistic traits. They can have experiences that are very much like those we have.

Some autism parents get mad when we make statements like that. They say, "My child is autistic! He is nothing like your non-autistic child! He is nothing like you pretend autistics, with your talking and grown-upness and ability to tell me I'm wrong!"

Genetic research has turned up hundreds of genes that can contribute to autism, all of them only a tiny fraction of the cause. And yet autism is highly genetic. It's a disorder that you get when you have enough of those genes, in the right combination, in the right person. And yet all of those genes are floating around in the general population, in people who aren't autistic.

Is it so hard to understand that neurotypicals can have autistic traits--that we can "all be a little autistic"--and still understand that autism is a disability, a significant one? Are people so desperate to distance themselves from the idea of disability that this is a threatening concept?

When we say that typical people share experiences with disabled people, we aren't trivializing disability. We're saying that disability itself is a part of the human experience, not a world apart.

Nov. 20th, 2014

What is Autism Culture?

A culture is a set of ideas shared by the members of a group of people. It can be based around genetic relationships, common experiences, common goals, or anything else that groups people. Even universities and corporations have cultures. And so does the autism spectrum.

With the Internet comes the ability to talk to each other--even to those who can't use spoken words, and, through family and friends, to those who don't use words at all. As we've begun to communicate, we've formed ideas that we can access more easily than people who aren't autistic can. And that's the beginning of a common culture.

I don't mean here that we all believe or experience the same things; that would be ridiculous. It is more that we all use the same concepts. For example--one person may be desperate for a cure; another person may declare they would rather die first; but both are part of the same culture because they both understand that curing autism is a very significant issue. Even someone arguing that it should not be significant is accessing that same idea of cure as a divisive issue, either desirable or not.

It's a very nebulous thing, this new culture. It hasn't quite formed a distinct shape yet. You can see it in the language we use. Some people say "Aspie" and others "Aspergian"; some people mean "neurotypical" as "non-autistic" and others mean it as "neurologically average", excluding non-autistic people with brain-based differences. Right now it's more of a loosely connected web of subcultures than one big culture. There's the intersection of autism and the bigger developmental disability culture (which is, by the way, more well-established than ours; just look at People First). Then there are the people who went to mainstream school, who tend to focus on bullying and exclusion, and the autism-as-disability group who focus on autism as a disability rights issue. Each forum and group has its own set of ideas to contribute.

It's interesting to watch these ideas crystallize as the months and years pass. Our library of ideas is like half-mixed pancake batter, with bits of flour still dry and milk still sloshing around. And yet as time passes, those loosely bound groups join hands, and the ideas we share become better connected. I remember when it was common to consider Asperger's to be not on the spectrum at all, to define disability as necessarily severe, or to use "...but I'm really smart" as a way of justifying one's existence despite disability. We're starting to connect those subgroups, the developmental disability people and the nerdy-gifted people, and when someone goes to put down one group or the other, people call them on it.

"AS/HFA" and "Autistic" used to look at each other warily, and there's still some of that, but now they're starting to merge, probably because we're realizing just how much we do have in common. I remember when I was first diagnosed I focused on the idea that autistic people could be talented and refused to see myself as disabled. Now, I know I'm disabled, I identify with "developmental disability", and I understand that it's okay to ask for help--that, indeed, it's my right, that it's perfectly legitimate to request help with daily living skills so that you can finish a college degree. I've learned so much from the people they label "low-functioning" that I'm a little bewildered by the idea that I used to think we were fundamentally different just because I can usually talk.

Disabled doesn't mean incapable; gifted doesn't mean you can do everything. As a gifted person with a moderate developmental disabilities, I've come to understand that, like many autistics, I'm floating in the middle between subgroups; but as autism culture starts to work out the lumps and connect the ideas, more and more people are realizing that they're in the same situation I'm in, that the spectrum isn't either-or. We're seeing ourselves in people who, in the outside world, would be put in completely different sociocultural boxes.

We will probably always have those subgroups and disagreements. Because we're human, there'll always be drama, arguments, even hatred and hostility. But as time goes on and we exchange ideas, we're building a library of information that is the foundation of this new culture.

Nov. 10th, 2014

The sensory processing paradox

The other day I was shopping and using a self-checkout machine to pay for my groceries. It was a noisy, busy store and I was having a hard time hearing whether the machine was beeping to signal that it had scanned a bar code. After a while, I put in my earplugs, frustrated and thinking at least I would have peace and quiet. And lo and behold, with my earplugs in, suddenly I could hear the beeps. The earplugs had cut out just enough noise that I was now able to filter out the relevant noise from the irrelevant.

This is something that many of us with sensory processing issues know: Less is more. Block out some of the input, and you can more easily interpret the rest. Put on sunglasses, and you can see better; wear a hood to block peripheral vision, and you can navigate better. Sensory processing disorder, whether it comes with autism or without it, can give you such a flood of sensation that you can't make sense of any of it. That's why so many of us avert our eyes, curl into balls, huddle into our blankets, shy away from noise and light. The hyposensitive may deliberately seek intense sensations; the hypersensitive seek to block out all the subtle things that confuse what we're trying to pay attention to.

Why don't the therapists understand this? When they make us seem to be paying attention, when they force us into eye contact and "participation", they aren't involving us; they are blinding us. When a person understands better what they aren't directly looking at, forcing them to look at it--and worse, training them to force themselves to look at it--can mean denying them the experience of it altogether. But I suppose, when looking normal at all costs is the priority, a little bit of distress and an inability to actually participate while seeming to do so, is a small price to pay.

Nov. 8th, 2014

Remembering the Dead

Today I added the 200th memorial page to the autism memorial site. The most recent death was on Monday. We lost a little boy named London McCabe, a six-year-old iPad afficionado with a cute smile. His mother threw him off a bridge after blogging about how hard it was to raise an autistic child and asking her readers for money.

London's story is the most recent, but it's not the most recently added. The 200th I added was Dyasha Phelps Smith, a 21-year-old high schooler who died from choking because she wasn't properly supervised. Even though she died before London, she was added later, because I had trouble determining whether her death was a case of negligence or a simple accident that could've happened to any high-schooler.

And that's one of the odd realities of maintaining a memorial: It's a research project. You think at first glance that it would be all about finding these tragedies, mourning them, and telling others so as to reduce the chances that they'll happen again. And yes, that's the intent, but in the day-to-day of it, despite the tragedies, it can get very mundane. Think how Holocaust researchers have to pick through old records, match names, interview dwindling numbers of witnesses, just like any other historian. Maintaining the memorial is a lot of that same thing--searching through the Internet, following leads, deciphering foreign-language articles, searching virtual graveyards, even matching pictures.

I've learned a lot over these past 18 months. I can now read court documents with full comprehension. I know how to find old newspaper articles. I'm familiar with the Holocaust library at my university and I know how to track down articles about an obscure person even when a famous person has the same name. I've consulted with research librarians and frequented online crime forums. Sometimes, as time goes on, my little memorial becomes one of the last signs that the deceased individual even existed. Sometimes, I get involved in big cases that make the national news.

One of the problems I often run into is deciding whether or not to include a case. It isn't enough for someone to be autistic and dead; this is a memorial specifically for those who died because other people saw autistics as not worth caring for, or denied them the basic necessities of life, or killed them. Murders are easy; if someone knows they're autistic and kills them, that's enough. Or if someone knows they're disabled, or sees them as a good target, I'll put it in. Extreme neglect cases are easy too. Jarrod Tutko starves to death in his own attic; he's there. But what's neglect, and what's an accident? That's why Dyasha's case took so long for me to decide to add, even though I first read about it on the day it happened. She choked to death at school because she wasn't supervised; I had to establish that the school knew she needed supervision, that she was left alone despite that known danger.

I'm always up against that problem. When I include a case, then people get to know about the person we've lost, and we learn how bad the problem of anti-autistic hate crime, abuse, and neglect really is. But if I include a case that's too normal, that could've happened to anyone, that didn't really involve neglect despite its tragedy, then I risk making those hate-crime deaths trivial.

Here's an example of a case I didn't include:
City to Modify Traffic Lights after Death of Teenager
In this case, an autistic teenager who was obeying traffic rules got killed because the traffic light was mistimed. David Lindley is no less dead even though no one intended to kill him. Perhaps his autism even made him more vulnerable to dying from being killed by a mistimed traffic light (I know it would have been hard for me to think fast enough to understand that the traffic light was "lying" to me). But in this case, there was no prejudice, no intent, no carelessness, no system that refused to give an autistic person the basic help he needed to live. It was just a mistimed traffic light and a teenager who walked into traffic he didn't know would be there. It could even be called negligence, depending on exactly how mistimed it was and exactly how little the engineers cared about making it right. But it wasn't aimed at autistic people, or at disabled people, or at anyone in particular, and that means the case doesn't go on the memorial.

But even those cases, I have to research properly. People who want to look good in the media don't come right out and say, "Hi! I'm a horrible excuse for a human being who doesn't care enough to give an autistic person the basic necessities they need to live! Villify me, please; I deserve it!" No; they say, "We tried our best," or, "We're looking into it," or "We're changing our policy." Sometimes they deny culpability entirely. Sometimes they try to shift the blame. As an autistic person myself, it's hard for me to detect that deception. I've almost had to come up with heuristics: If they were autistic, and their killer intended to kill them and knew they were autistic, I will put the case on the memorial. If they were denied something that their staff knew they needed and died as a result, I will put the case on the memorial. If the same thing could have happened to a neurotypical person in the same situation, I will not put the case on the memorial. If a suicide comes after a long period of abuse that was not addressed, I will put it on the memorial, but the mere presence of abuse or bullying by itself isn't enough. If a suicide comes after depression despite treatment, the death was due to depression; if a suicide comes after depression when treatment was denied or botched, it was due to neglect.

And there are so many borderline cases. Avonte Oquendo, who could have been saved by an audible door alarm, is not on the memorial; Dyasha, who could have been saved by one-on-one supervision, is. The distinction is slim; Avonte had a handwritten note from his mother that "he likes to run", while Dyasha had a formal supervision plan that was ignored. I'm still not sure I'm right. At some point, if more is known, you might see Avonte Oquendo on the memorial.

To this project as to any other, I bring my autistic detail-oriented nature. I collect these tragedies like you might collect beautiful stones, and look over them later. It's a macabre collection, even depressing, but it's easier for me to collect than not because it means that I'm doing something instead of sitting and watching cattle cars go by.

The emotional experience of it is, for me, actually less painful than you might think. My empathy style, as an autistic person, is rather detached. I care about someone halfway across the world just as easily as I care about my next-door neighbor, but instead of being emotionally devastated, instead of echoing their pain with pain of my own, I feel more of a sense of wrongness. It's like what I might feel when a pattern is broken or when I'm confronted with an ugly prime number, but it's stronger than that. It's, "The world is wrong. It has to be fixed. I have to put this crooked thing straight. I have to put this chaotic collection in order."

And so, when I work on the memorial, if I feel anything most of all, it's satisfaction. I know how hard it is for autistic people, and I hate how badly we're treated. This lets me feel like I'm doing something.

The other day I found a photo and a name for an anonymous child who was killed in 2010 by his grandmother. He was one of the first whose stories I found, but I never knew his name because the media couldn't report it, since when he was murdered, his mother couldn't be found to notify of his death. Periodically I would search for news of him, trying to find who that anonymous nine-year-old boy was. Finally, I found his grandmother's grave on an online cemetery, and from his grandmother's grave, I found a link to his. Now I know his name was Kyle Potts, and I have a photo of a smiling, gap-toothed boy with brown hair. Kyle Potts is still dead, and I can't change that; but now that I know his name and can see his image, I can better tell other people that little boys like him deserve to live.

Sometimes I find myself talking to the dead. "Here, little one; let's find out who killed you." "Where did you live?" "Three sisters; you must have been surrounded by girls..." "Oh, you were such a beautiful child..." "You liked cats and coffee, just like me..." Is that creepy? I guess it is. I feel like they, especially the children, are my cousins, long-lost relatives, people I'll never get to know. Somehow I feel cheated because I can't mourn them as intensely as I would if I had known them better.

The youngest on the memorial six-month-old Rylan Rochester, whose mother killed him because she thought he was autistic. The oldest is 82-year-old Richard Meredith, whose lobotomy at age seventeen caused brain damage that, in old age, resulted in death from choking. There are police shootings--all men, mostly non-white. There are restraint deaths, sometimes with tiny children being crushed by multiple adults. There are abuse cases, murders, and neglect cases. Some committed suicide after being tortured by bullies and receiving no help. There are a few unsolved cases and one serial killer who targeted disabled men. A few weren't diagnosed autistic, either because they were never evaluated, or because they weren't autistic but were labeled autistic by their killers. There's the memorial to the disabled of Europe killed during the Holocaust, though I still haven't found any names or photos of victims who were probably autistic--both because the records are so scanty and because, back then, autism wasn't well-known.

The one thing all of these people have in common is that, in a better world, one where we cared about autistic people, they would have lived.

Sometimes it gets hard to keep up with all the information and cases pile up. Sometimes I just get frustrated with my inability to pin down the facts of a case. And yet eventually, I always come back to the project, combing the news, looking through legal databases and memorial sites. For me, it's easier to address these tragedies head-on than it is to try to look the other way.

Oct. 29th, 2014

The Bus and the Waiting Room

I'm in the process of trying to get a case manager, possibly an aide of some kind. I've applied at the department of developmental disabilities; their waiting list is months long, and I'd need to make an appeal because I had an unusually late diagnosis, since as a child I was denied an evaluation for autism by a mother in deep denial and probably mildly autistic herself. I've tried to get an appointment with my primary care doctor; I made an appointment in August and still haven't seen them. My last resort was TCN community mental health services, which has in the past kicked me off a case manager's workload for missing an appointment (note: Missing appointments is one of the problems I have thanks to the executive dysfunction part of my disability) and diagnosed me with borderline personality disorder on the strength of a single symptom (self-injury, which is related to autism; I have none of the others). They treated me for quite a while and didn't catch my (apparently glaringly obvious) autism until a nurse-practitioner with an autistic son spoke up. So needless to say I wasn't sanguine about my chances with them, and of course, they have a monopoly on community mental health services in my county, so there's no one else.

With help, I called TCN and was told that they had walk-in intakes only, and only on Tuesdays; and you should really be there before 7:30, or you might not be seen that day. Be prepared to wait.

This was a problem for me, whose "early morning" at that point was somewhere around 2 p.m. But I agreed to try anyway. We talked about how to use the GreeneCATS bus (an assisted transport service on a fixed loop). Over the next week I painstakingly worked through the equivalent of jet lag, and on the next Tuesday I was up at 4 a.m., giving myself plenty of time to ensure I had the chance to get onto that bus. I walked through the morning darkness and made my way to the bus stop, in front of my university, and soon I was sitting and clutching my coins and my "Disabled pass" card. I'd already planned out exactly how I would survive the bus trip and the long hours in the waiting room, and how I would explain what I needed and try to get them to help me with it.

The bus approached... and didn't stop. They drove away without me. Cue meltdown.

Because, seriously, planning for something for a week, something you desperately need? And then realizing--everything just changed--what do I do now?--that's just an invitation for a meltdown.

I got myself to the disability services center at the school, where they still help me despite no longer technically being a student, and I couldn't stop crying, lying on the floor next to the door. Once I'd calmed myself a little, I went inside. It wasn't open yet, but the door was unlocked, and one of the workers there very sensibly offered me a cup of coffee while I explained what had happened. I expressed my very strong desire never to have anything to do with either TCN or GreeneCATS, ever again. Even if things had gone perfectly, I would have spent a week preparing myself for that early-morning bus, spent hours waiting for an appointment with someone who probably knows less about psychology than I do, and possibly gotten some kind of sub-standard assistance, but more likely been referred to the same developmental disability department that had already told me I needed to wait months, possibly a year or more. And then I would've had to survive the trip home, and there would go another few days to recover.

Now imagine what might happen to someone with, say, depression. Ask them to get up at 4 a.m., to wait for hours... they don't have that much willpower. I know I didn't, when I had depression. They could die because they didn't get treatment. The inconvenience of this kind of thing is nearly universal when disabled people try to get services. In many cases, like my own, and that of the hypothetical depressed person trying to wrap their heads around the task of getting to an early-morning appointment that may never even happen, this kind of extreme inconvenience is as effective at blocking access to services as putting a wheelchair repair office up four flights of stairs in a building with no elevator, and then blaming the wheelchair user for not caring enough to drag themselves and their malfunctioning chair up those stairs.

Well, the disability services people at first guessed that I had waited for the bus at the wrong place, or done something else wrong, being a novice public-transport user. So, they finally talked me into trying again (I agreed mostly because I realized I would have to prove that TCN would be no help before they took it off their list). With me in tow, a disability services counselor took me to the bus stop and waited with me until the bus pulled into the bus stop--and then pulled away again without stopping.

I felt vindicated.

Her footsteps sounded angry as we walked back to the disability services office, but I knew she wasn't angry at me. She knows it's hard to get services; she sees every day how much prejudice we face. She tends toward the mama-bear approach when the system fails the students she serves, most of whom are much younger than I am.

This is how they keep us from getting what we need. Poor, disabled, old, young, gay, or the wrong race--we technically have access to everything we need. It's just inconvenient. Except that this kind of inconvenience is not just a minor annoyance, like waiting in line at the bank. This is a barrier to services as real as any other.

If you're part of a minority, any minority really, and you need something that's ostensibly been provided for you, you have to wait. You have to be a good little supplicant and stand in that line until you go nuts from the boredom and you lose all the other things you could have done with that time. I've been both a client and a worker at food pantries, and that's how it was there. People would arrive hours ahead of time, lining the hallways. I tried to create a more efficient system to get people through faster, but the established hierarchy of the food pantry rejected any innovations I could've created. Even passing out forms for people to fill in while they waited was verboten. You wait for food; you wait for medical care; you wait for opportunities that are just handed to people who aren't poor, or disabled, or whatever you happen to be that makes you less-than. If you're not constantly on top of everything, all the paperwork and all the appointments, you lose your chance and you have to wait all over again. Want a job? Spend two hours on the bus, one way, to get there. Want good food? Spend time preparing it; you can't afford ready-made food unless it's junk food. Want medical care? Wait in line. Wait again. You're not important; you're just set aside until someone important has the time to deal with you.

The poorer you are, the less your time is worth. By the time you get to where I am, it's totally normal for a week's preparation for a day-long wait for a fifteen-minute intake appointment to be wasted because the assisted transport bus didn't think you were important enough to stop for.

Oct. 19th, 2014

This Cool Thing My Cat Did

So today I'm walking down a hallway, shoes on and intent to getting to the door because, darn it, if I don't go shopping today I'll have to go a sixth day without a shower curtain. And Tiny, all twelve pounds of inquisitive nannyish boy-cat, comes down the hallway the other way. It's a narrow hallway because the apartment's small and there's a vacuum cleaner on one side of it, so we can't pass by each other comfortably.

Tiny looks at me, looks at my big clunky shoes (which he hates me wearing, since they make me clumsy and noisy), and stops right where he is. He's saying, "Uhh... you first," and thinking "Bzzzzt! Clumsy human sighted! Collision avoidance system activated!"

I look at Tiny and I automatically move to the side of the hallway, pressing myself against the wall. Tiny sees this, his tail goes up, and he marches through the provided gap. He's acknowledging that I've given him the right of way, and he's saying, "Thanks, have a good day!"

I've seen this happen so many times with humans in narrow spaces, but I didn't realize cats did it, too. It shouldn't surprise me that Tiny gets the idea of sharing a narrow hallway, since he's so good at figuring out everything else I do. In fact, I'm pretty sure he gets it better than me--there have been many times when I've run into things, tangled up foot traffic, and generally caused confusion because I couldn't insert myself properly into the rhythm of people walking and sharing a sidewalk. But Tiny gets it.

My cat is awesome.

Oct. 9th, 2014

So she sent the cops after me...

Today at around two in the afternoon I was sleeping peacefully in bed, as my wonky circadian rhythm demanded. My alarm radio was going off and had been for about a half hour. I heard a knock at the door. It was the police, doing a welfare check. Apparently, my mother had called them and demanded that they check on me and get me to call her.

The officer himself was decent about it, and I was well-rested and my communication was pretty good--no nightmarish police encounter here, thank God. I was asked what my diagnosis was (autism and depression), whether I had enough food (yes) and how I would get more (walking to the store), how I was paying my bills (automatically), whether I felt like killing myself (no) or hurting myself (also no). He walked through the apartment, saw the moderate mess and got glared at by Tiny, gave me the number for the counseling service that diagnosed me to begin with, asked me to call my mother, and left.

Interestingly, when he advised me to get assistance and told me it was okay to do so, he used the same metaphor I've used myself for years and, as far as I can tell, came up with myself: "A man whose car breaks down goes and gets help to get the car fixed. A disabled person who needs help with living independently gets help for that, too."

It's not a complex metaphor to compare disability assistance to societal interdependence such as what lets a person call a mechanic to fix a car. It's one of those ideas that gets invented multiple times by multiple people, all over the place, and then spreads until everyone knows it and no one knows who thought of it first.

It's not the first time this has happened. Other things I've thought of have spread like that, subtly, until I've heard them from someone else as advice or information or interesting ideas they were explaining to me. Many of them are probably ideas that are engendered by the social conditions we live in--ideas that are made accessible and so easy to originate that anyone who is looking out for them can put them together.

That's the beauty of the Internet, of modern technology that lets us exchange ideas so easily. An idea is made accessible by society, and nearly simultaneously it sparks in a dozen people's minds. They think it's interesting and they share it, and from there it spreads, to combine with other ideas later on. It makes me wonder whether the effect I'm having on the world is bigger than I think because of this fractal pattern of combining and spreading ideas; and simultaneously, I wonder whether if I weren't spreading those ideas, they would spread anyway simply because the world is ready for them.

Well, I sent my mom an e-mail. I have the number for the counseling service. I still don't know how I'm going to get out of this mess, but I do know that I am not moving near my mom, let alone move in with her, because one of my priorities is to stay independent, no matter how much help I need, and my mom is one of those people who thinks that if a person's disabled, someone else should run their life for them because they know what's best for them. I tend to disagree.

So, Mom--I know you're probably reading this--I am a grown woman, I make my own decisions, and that's the way it's going to stay. Yes, I woke you up at 3 a.m.; yes, I had hours-long tantrums; yes, you had problems getting me in and out of the shower; yes, I'm strong-willed and difficult and all of that. But I happen to like being strong-willed and difficult, thank you very much. I am my own person, not a good little cripple who's going to look adoringly up at anyone who oh-so-charitably deigns to give them a few coppers, and if you try to take my right to decide for myself what my life is going to be like, I will have one of those famous temper tantrums, and you do NOT want to be at ground zero.

As for getting help, I have a list of steps I'm going to try:
Go to the disability services office and ask for help getting in touch with the counseling service.
Talk to my case worker at the vocational rehab services bureau, whose e-mail has been sitting in my in box for two weeks.
Call the pharmacy and get them to call my doctor for a refill on prescriptions. Hopefully the doctor says yes.
Gather up the mail I haven't opened or answered, and either dig through it myself or ask for help doing it.

How long it's going to take me to organize doing those things, I haven't a clue, but at least they're better than having no idea where to go next.

Oct. 1st, 2014

Adult regression

I'm not coping nearly as well as I used to in the past.

I recently dropped my classes, so I'm not in school anymore, but that's just the tip of the iceberg. I haven't been able to get anywhere or do much of anything useful.

I used to be able to go shopping when I needed to, and it was difficult but I managed it. Now, I'm putting it off and putting it off until there's nothing in the house to eat. I used to be able to clean the house... now it's getting steadily dirtier and dirtier. I thought I'd mastered keeping myself clean--ditto; I'm lucky if I take a shower every other day. Getting to appointments is slowly getting impossible. Today I had a doctor's appointment I didn't go to, but I'm proud of myself for knowing I wouldn't be able to do it on my own and texting a friend for help. Unfortunately I didn't give him enough notice, so it didn't work, but the way I am now, it was actually an accomplishment. Now I have the additional problem of knowing I'm running out of prescribed medication and not knowing when I'll be able to get more.

Usually when this happens, it's because I'm getting depressed again, but this seems to be the other way round--I'm getting depressed because I'm worried that I won't be able to stay independent. It's not the independence I care about so much (it's okay if people have to do some things for me); it's the right to make decisions for myself. I worry that my mom will step in and take over as my "caretaker"/jailer. I know that my rent is too high to sustain on a disability check, and I worry about how I'm going to handle finding a different place and moving there, because right now I absolutely can't fathom how I would get to know the ins and outs of a new neighborhood. I want to do something useful with my life, but doors are closing in my face. I'm in debt and overdrawn at the bank and I don't even know how bad it is because I haven't checked my balance lately. I can't find the help I need unless I somehow muster up the executive functioning, initiative, and social skills that are the very same reasons I need help in the first place.

I've tried to find an aide, but I can't seem to navigate the system well enough, and whenever people help me, half the time I don't keep my appointments with them. My sleep cycle is so out of whack I never know when I'm going to be tired or when I'm going to wake up. I worry I'll lose access to the internet, which right now is basically my only social outlet, and if I lost that I'd be totally isolated. Even the autism memorial project is getting stalled. I have maybe fifteen or twenty names that I need to be researching, and I keep putting that off, too, even though I care deeply. I'm having more and more episodes of not being able to find words, too, though that doesn't scare me so much because it's happened a lot already.

When an initially independent adult with a disability becomes more disabled, especially when it's not easy to predict (autism is supposed to be pretty stable throughout the lifetime), they're immediately in a bind-- in order to get the help they need, they need the skills they're losing access to. I don't know why this is happening to me--it's been happening, slowly, for years; it's just recently that I'm passing the threshold of truly not being able to live on my own anymore. I do know that my priorities are to stay alive, to keep my cats, to keep my right to decide for myself, and to keep a way to communicate with the rest of the world.

Sep. 27th, 2014


Someone at Wrong Planet recently posed the question, "What is love?" Here's my answer.

Love is having among your top priorities the well-being and happiness of another living creature. It means that their happiness brings you satisfaction and that you act in ways that benefit them, and that even when you don't feel emotionally connected, you still persist in making decisions with their interests in mind.

I've thought about it some, and I think that by this definition it is actually possible to love people who never do anything but annoy you--or people you have never even met.

There are other words that can be used to describe related things--words like "passion", the dizzy-headed emotional and erotic connection to a new partner; "fondness", the warm feeling that one has for someone they feel comfortable with and consider a friend; or "duty" (to family, friends, or community), the decision to work to benefit someone else even when doing so brings you no satisfaction. There's the parent-child bond that includes a lot of protectiveness and a good deal of identifying the child as very nearly part of oneself, which is heavily rooted in the instinct to care for one's young.

But love, in general, is more than an emotion--if it were only an emotion, then all you'd have to do to stop loving someone is to get upset with them. Love is more of a long-term behavioral pattern, a conscious or subconscious decision, or a habit--perhaps even a way of life.

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