[This was written for my Introduction to Special Education class. The essay prompt was "What is your first memory of disability?" I don't think it's very good but it's the first time I've ever written all this out, from beginning to end.]
Last year, I had an experience which I think is relevant to this essay. I was filling out a form for a medical appointment, and was utterly bewildered by the question "What is the least you have ever weighed?" The correct answer could only be "6 lbs, 7 oz," but at the same time I doubted my birth weight was what the doctor wanted. I wrote it down anyway, because it was the only honest answer it was possible to give.
Similarly, I'm finding it difficult to identify my first experience with disability. Technically, my entire life is an experience with disability. The process I'm going through now, as I struggle to focus on the "spirit" of the essay prompt and discard its literal meaning, is an excellent example. I can’t pick my first memory of disability, but I can tell you about elementary school. I think that might be what you want.
The first time I knew that my brain was irregular was the day in first grade when I looked around the playground and realized that no one else was sitting alone. After this realization, I ran to join another group of children immediately – not prompted by innate desire, but by fear. What did they know that I didn’t?
Much of my life has been spent answering that question.
I remember walking down a dimly-lit hospital hallway when I was four, away from the specialist who analyzed my gait. I remember the MRI I got when I was ten, and the doctor who frightened me by telling me that MRIs were for people who had things wrong with their brains. I remember being sedated in order to go to the dentist.
My parents tell the story about how my baby sister’s screaming aggravated me so much, I asked them to put her outside. They tell me about how I hid under the table in kindergarten. They tell me about the doctor who told them that I was a genius, and the doctor who told them that I might never go to college, and the doctor who told them that I was perfectly ordinary and the problem was with them, their selfish need to consider their child disabled. My mom tells the story about how when I was seven years old she would ask me to spell words for her.
I had facilitated play-dates. I had shadow tutors, behavioral intervention. In occupational therapy, an energetic woman rolled exercise balls over my body and encouraged me to play on swings. At school, teachers took my books away and told me that recess was for socializing. I tried to play soccer but was terrified of the ball, of the other team, of my team. I was frightened of the lofts in my private school classroom, so my father took me “lofting” when school was over, slowly climbing the ladder until my fear subsided. For years I went to social skills training with a group of other misfit girls. We watched videos. We watched Jake demonstrate the right way to comfort a friend, the wrong way to comfort a friend. We learned how often other people lied.
I was bullied subtly – not with name-calling, but with observations. “You never look at things.” “You daydream too much.” “You’re weird.” “You should see a psychiatrist.” “You suck at sports.” “People call you a freak.” These simple statements terrified me. I was doing everything wrong. They could see. They knew.
When I was nine, my mom sat me down and gave me the name for the strangeness in my head. Three letters to explain everything – the second, parallel education I’d been receiving; my fear of loud noises, of soccer balls, of new foods; the painfully obvious asynchrony between me and my peers. It was like learning my own name. I cried, not because I was unhappy but because I was so profoundly relieved.
Friday, January 28, 2011
Monday, January 3, 2011
You are also my brain: adventures in (in)(ter)dependent living
I’m at home right now and thinking, as I always do when I’m at home, about my brain.
I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.
But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:
At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).
At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.
Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.
There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.
At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.
I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.
Now what do I do about it?
I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.
But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:
At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).
At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.
Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.
There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.
At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.
I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.
Now what do I do about it?
Sunday, December 26, 2010
I Know Who Baby Knauer Was
[Trigger warning for discussion of (historical) violence against disabled people.]
Finals week was a weird time to be knocked down by history.
I'd been researching and writing a final paper for my German history class (weeks overdue) on a topic that I've studied before: disabled people in the Nazi regime. Really sad, grim stuff, and I knew that going in.
But here's the thing that I've learned from three years of genocide studies and a lifetime of Holocaust-related neuroses: you know that saying? The one every history major has heard several thousand times? That one death is a tragedy, and a million deaths is a statistic?
Well, it's kind of true.
Not that you can't feel sad about a million deaths. But for me personally, there's something abstract, something incomprehensible about deaths that are presented only as numbers. One death is easier to understand, because all around me are individuals I love, and I know how crushed I would be if one of them died. It's somehow easier for me to conceptualize a death if I know some details about the person who died: their name, something about their life story.
The person I knew as baby Knauer lived for such a short time, there was very little of his life story to tell. Until finals week, I didn't know that story. Now I do. And where before I had been outraged at the injustice of baby Knauer's death, now I feel utter grief.
Let me explain.
Probably everyone who has done research on the Nazi 'euthanasia' program knows about the Knauer case. The basic facts are: a man who for a long time was only known as Herr Knauer petitioned Hitler to have his infant child killed after his child was born blind and with some physical deformities. Hitler sent his personal physician, Karl Brandt, to assess the baby. If Brandt deemed the child "unworthy of life," he was authorized to have the child killed. Brandt decided baby Knauer should die, and baby Knauer did. Soon after this, the children's killing program began, and then the T4 adult killing program. Baby Knauer was the first victim of Nazi 'euthanasia.'
Then, in 2007, historian Ulf Schmidt published a biography of Karl Brandt. In this biography, Schmidt revealed the details of baby Knauer's life, saying that he didn't feel it was right to "place the justifiable claim of the parents for anonymity above the personality and suffering of the first 'euthanasia' victim."
In my school library, I found Schmidt's book and read the section on the Knauer case. Here's what I learned:
Gerhard Herbert Kretschmar was born on February 20th, 1939, in a village called PomĪ²en. He was blind, and "lacked one leg and part of an arm." Some doctors speculated that he was "feeble-minded" but realistically they probably couldn't have known this at his age. His parents, Richard Gerhardt Kretschmar and Lina Sonja Kretschmar, believed strongly in Nazi ideology, and his father wanted him dead.
Schmidt writes that Richard Kretschmar took Gerhardt to the Leipzig Children's Clinic "in the spring of 1939" -- when Gerhardt was just one or two months old -- and had him institutionalized there. Werner Catel, the head of the clinic, later testified that Herr Kretschmar had wanted him to kill Gerhardt right then, but Catel refused because of legal concerns. (As an aside here, Catel took part in the T4 program later, so when he refused to kill Gerhardt he didn't have any moral problems with infanticide -- he was just concerned about going to jail.) When Catel would not kill Gerhardt, Herr Kretschmar or perhaps one of his relatives petitioned Hitler directly to end the child's life. Hitler sent Karl Brandt to examine Gerhard and decide whether he should live or die. After confirming that Gerhard was blind and physically disabled, Brandt authorized the clinic staff to kill the baby, and Gerhard was murdered on July 25, 1939. He was five months old.
Once I read those names and dates, I couldn't get them out of my head for days. It's strange to think that these few details -- Gerhard's name, his assigned sex, his birth and death dates -- would change my perception of the case. I wish that it didn't matter, that I would feel just as much grief for a nameless child murdered 70 years ago as I would for a named one, but somehow the name is important to me. Today, when parents continue to murder their children, when people call themselves part of the disability community while dreaming of a world without us, it seems vitally important to hold on to that name.
Finals week was a weird time to be knocked down by history.
I'd been researching and writing a final paper for my German history class (weeks overdue) on a topic that I've studied before: disabled people in the Nazi regime. Really sad, grim stuff, and I knew that going in.
But here's the thing that I've learned from three years of genocide studies and a lifetime of Holocaust-related neuroses: you know that saying? The one every history major has heard several thousand times? That one death is a tragedy, and a million deaths is a statistic?
Well, it's kind of true.
Not that you can't feel sad about a million deaths. But for me personally, there's something abstract, something incomprehensible about deaths that are presented only as numbers. One death is easier to understand, because all around me are individuals I love, and I know how crushed I would be if one of them died. It's somehow easier for me to conceptualize a death if I know some details about the person who died: their name, something about their life story.
The person I knew as baby Knauer lived for such a short time, there was very little of his life story to tell. Until finals week, I didn't know that story. Now I do. And where before I had been outraged at the injustice of baby Knauer's death, now I feel utter grief.
Let me explain.
Probably everyone who has done research on the Nazi 'euthanasia' program knows about the Knauer case. The basic facts are: a man who for a long time was only known as Herr Knauer petitioned Hitler to have his infant child killed after his child was born blind and with some physical deformities. Hitler sent his personal physician, Karl Brandt, to assess the baby. If Brandt deemed the child "unworthy of life," he was authorized to have the child killed. Brandt decided baby Knauer should die, and baby Knauer did. Soon after this, the children's killing program began, and then the T4 adult killing program. Baby Knauer was the first victim of Nazi 'euthanasia.'
Then, in 2007, historian Ulf Schmidt published a biography of Karl Brandt. In this biography, Schmidt revealed the details of baby Knauer's life, saying that he didn't feel it was right to "place the justifiable claim of the parents for anonymity above the personality and suffering of the first 'euthanasia' victim."
In my school library, I found Schmidt's book and read the section on the Knauer case. Here's what I learned:
Gerhard Herbert Kretschmar was born on February 20th, 1939, in a village called PomĪ²en. He was blind, and "lacked one leg and part of an arm." Some doctors speculated that he was "feeble-minded" but realistically they probably couldn't have known this at his age. His parents, Richard Gerhardt Kretschmar and Lina Sonja Kretschmar, believed strongly in Nazi ideology, and his father wanted him dead.
Schmidt writes that Richard Kretschmar took Gerhardt to the Leipzig Children's Clinic "in the spring of 1939" -- when Gerhardt was just one or two months old -- and had him institutionalized there. Werner Catel, the head of the clinic, later testified that Herr Kretschmar had wanted him to kill Gerhardt right then, but Catel refused because of legal concerns. (As an aside here, Catel took part in the T4 program later, so when he refused to kill Gerhardt he didn't have any moral problems with infanticide -- he was just concerned about going to jail.) When Catel would not kill Gerhardt, Herr Kretschmar or perhaps one of his relatives petitioned Hitler directly to end the child's life. Hitler sent Karl Brandt to examine Gerhard and decide whether he should live or die. After confirming that Gerhard was blind and physically disabled, Brandt authorized the clinic staff to kill the baby, and Gerhard was murdered on July 25, 1939. He was five months old.
Once I read those names and dates, I couldn't get them out of my head for days. It's strange to think that these few details -- Gerhard's name, his assigned sex, his birth and death dates -- would change my perception of the case. I wish that it didn't matter, that I would feel just as much grief for a nameless child murdered 70 years ago as I would for a named one, but somehow the name is important to me. Today, when parents continue to murder their children, when people call themselves part of the disability community while dreaming of a world without us, it seems vitally important to hold on to that name.
Friday, December 10, 2010
Recommended Reading: Finals Week Edition
Okay, so it's finals week and I want to write a post but I don't have time to write my own post so instead I'll link to other people's posts. These are all things I've found recently that I think are important and wanted to share. The "recommended reading" post itself is in the style of FWD-Forward, which does a similar link roundup every weekday and which I would most definitely recommend.
First, Amanda recently did a series of posts on the concept of "social skills" that changed the way I think. They are collected here:
Social Skills Don't Exist
Secondly! My friend Asher wrote a Trans 101 that explains sex and gender identity without using transphobic language.
Not Your Mom's Trans 101
I found this brilliant essay by Cal Montgomery a while ago. It deals with a lot of things, but mostly the way that people talk about dependence as it relates to disability.
Critic of the Dawn
Finally, some takes on aspects of Glee that have annoyed the fuck out of me recently:
Dear Ryan Murphy: I have words about Glee
Glee: A Very Glee Christmas
First, Amanda recently did a series of posts on the concept of "social skills" that changed the way I think. They are collected here:
Social Skills Don't Exist
Secondly! My friend Asher wrote a Trans 101 that explains sex and gender identity without using transphobic language.
Not Your Mom's Trans 101
I found this brilliant essay by Cal Montgomery a while ago. It deals with a lot of things, but mostly the way that people talk about dependence as it relates to disability.
Critic of the Dawn
Finally, some takes on aspects of Glee that have annoyed the fuck out of me recently:
Dear Ryan Murphy: I have words about Glee
Glee: A Very Glee Christmas
Saturday, December 4, 2010
Guilt-allaying things people tell me over the internet
So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.
"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher
“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend
"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad
"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction
"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher
“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend
"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad
"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction
Thursday, December 2, 2010
I am a limited resource and I don't know what to do about it
I’ve found a new way to be productive and it’s exhausting me.
I’m not sure if it’s more or less exhausting than the potent combination of guilt and anxiety produced by procrastination – probably it’s just a different kind of draining.
Today, after two hours cloistered in a library cubicle, working diligently on a late paper, I got stuck on the stairs to the ground floor. A girl passed me on the landing. She said something , and I couldn’t hear what. I had my headphones on, but with the cord yanked out, so I just heard muffled quiet, and felt pressure. The girl glanced back at me a few times. I remembered how to climb the stairs.
Outside of the library, I stood rocking on my heels, getting cold, blowing out clouds, stimming out on stars. It took me a while to gather the energy to walk to my dorm. I felt I’d hit some kind of wall. I thought, I have come to the end of my brain. In high school I had some arrogant idea that my brain was somehow infinite, and only my time was limited.
The moisture on the ground was turning into frost, creating a sparkling effect that first dazzled and then overwhelmed me.
I’m pretty sure I used the last of my spoons to get to my room, or perhaps the penultimate spoon. I have a backlog of German homework to do, but I can’t do it anymore, so now I’m calculating how early I have to get up this morning, how best to bury and wrap my alarm to keep my sleep-deprived self from simply shutting it off and giving up. I’m at that point where I’m so tired that the steps between me and sleep – taking things off the bed, turning off the light, setting and wrapping the clock – seem insurmountable.
So I’m not sleeping. I’m thinking about thinking, worrying about worrying, writing about writing.
I’m not sure if it’s more or less exhausting than the potent combination of guilt and anxiety produced by procrastination – probably it’s just a different kind of draining.
Today, after two hours cloistered in a library cubicle, working diligently on a late paper, I got stuck on the stairs to the ground floor. A girl passed me on the landing. She said something , and I couldn’t hear what. I had my headphones on, but with the cord yanked out, so I just heard muffled quiet, and felt pressure. The girl glanced back at me a few times. I remembered how to climb the stairs.
Outside of the library, I stood rocking on my heels, getting cold, blowing out clouds, stimming out on stars. It took me a while to gather the energy to walk to my dorm. I felt I’d hit some kind of wall. I thought, I have come to the end of my brain. In high school I had some arrogant idea that my brain was somehow infinite, and only my time was limited.
The moisture on the ground was turning into frost, creating a sparkling effect that first dazzled and then overwhelmed me.
I’m pretty sure I used the last of my spoons to get to my room, or perhaps the penultimate spoon. I have a backlog of German homework to do, but I can’t do it anymore, so now I’m calculating how early I have to get up this morning, how best to bury and wrap my alarm to keep my sleep-deprived self from simply shutting it off and giving up. I’m at that point where I’m so tired that the steps between me and sleep – taking things off the bed, turning off the light, setting and wrapping the clock – seem insurmountable.
So I’m not sleeping. I’m thinking about thinking, worrying about worrying, writing about writing.
Saturday, November 20, 2010
In Which I Am Obsessed With Spies
I like to imagine that I’m a spy. In my fantasy, I travel to interesting places to find out important things. I am elegant and competent. I wear great clothes and I always have a witty comeback, like James Bond but without the sexism.
I can lie perfectly. I can move silently. I can pick locks, hack computers. I can navigate a party with ease, picking up revealing information from the chatter around me. I always get the girl. I speak thirteen languages and have twenty false IDs. When I steal the secret documents from the evil corporation, I don’t leave a trace. I work for the good guys. I get the job done.
In reality, I know that this could never happen. For starters, spying isn’t so glamorous as all that. And spies usually work for the military, which I wouldn’t want to do. But more importantly, I would be a terrible spy. I’m clumsy and easily fatigued. I can’t pick locks or hack computers – I can’t even drive a car. I always think of witty comebacks too late.
I think the reason I fantasize about spying is because I would be such a bad spy. In my real life, I get frustrated a lot. I feel awkward, slow, incompetent. But in my spy fantasy, I always know what to do.
[This is another translated German class assignment. If I write more about my spy obsession I'll definitely discuss spying as an analogy for passing, moving through a world that you don't exactly belong in and trying above all else to keep that strangeness from showing. Trying to spot your contacts. Deciding when and how to blow your cover. Though I would of course be a bad spy, in some ways my life is kind of like spying.]
I can lie perfectly. I can move silently. I can pick locks, hack computers. I can navigate a party with ease, picking up revealing information from the chatter around me. I always get the girl. I speak thirteen languages and have twenty false IDs. When I steal the secret documents from the evil corporation, I don’t leave a trace. I work for the good guys. I get the job done.
In reality, I know that this could never happen. For starters, spying isn’t so glamorous as all that. And spies usually work for the military, which I wouldn’t want to do. But more importantly, I would be a terrible spy. I’m clumsy and easily fatigued. I can’t pick locks or hack computers – I can’t even drive a car. I always think of witty comebacks too late.
I think the reason I fantasize about spying is because I would be such a bad spy. In my real life, I get frustrated a lot. I feel awkward, slow, incompetent. But in my spy fantasy, I always know what to do.
[This is another translated German class assignment. If I write more about my spy obsession I'll definitely discuss spying as an analogy for passing, moving through a world that you don't exactly belong in and trying above all else to keep that strangeness from showing. Trying to spot your contacts. Deciding when and how to blow your cover. Though I would of course be a bad spy, in some ways my life is kind of like spying.]
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