I have a lot of links to talk up and that means it's time for recommended reading!
Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!
Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.
Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.
Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.
Thursday, February 10, 2011
Saturday, February 5, 2011
Quiet Hall Woes
When it's midnight on a quiet hall and your next-door neighbor, who is ill with Random Fever Illness and has mostly lost her voice, knocks on your door and asks politely whether you and your guest will please stop singing along to YouTube videos because she can hear you, the correct response is a quick apology followed by compliance. The correct response is most emphatically not to turn to your friend and burst into giggles, then turn back to your next-door neighbor and say "We half-expected this."
A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."
If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?
Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)
And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.
Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?
This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.
Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.
I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.
A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."
If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?
Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)
And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.
Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?
This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.
Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.
I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.
Wednesday, February 2, 2011
Community: I don't think it means what you think it means
I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.
I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.
Guys, I think this is a problem.
For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."
But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.
I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.
If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.
It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.
I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.
Guys, I think this is a problem.
For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."
But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.
I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.
If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.
It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.
Friday, January 28, 2011
First Encounters
[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.
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.
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
Subscribe to:
Posts (Atom)