[This post was originally published on the ASAN blog.]
Let me present to you a sequence of events.
On March 6th, a 22-year-old autistic man named George Hodgins was murdered in Sunnyvale, California. His mother, Elizabeth, pulled out a gun, shot him point-blank, and then killed herself.
In the following days and weeks, journalists wrote about George Hodgins’ murder. In their articles they called him “low functioning and high maintenance,” and called Elizabeth Hodgins “a devoted and loving mother.” They sought out quotes from other parents of autistic children, who normalized the crime by saying things like “every mother I know who has a child with special needs has a moment just like that.”
People came to comment on these articles. They said that they felt sympathy for the mother. They called her George’s “guardian angel.” They said no one should judge her unless they had walked in her shoes. They said that it wasn’t wrong because he was autistic, and autistic children are hell to raise. They said that it wasn’t wrong because she was obviously responding to a lack of services. (In fact, she had refused services.) They said that it wasn’t wrong because he was disabled, so and his life couldn’t have been very good anyway.
On March 8th, Robert Latimer went on television to talk about how loving and compassionate it was when he gassed his disabled daughter Tracy. He called for “euthanasia” – the murder of disabled children by their parents – to be legalized in Canada. A woman who appeared with him agreed. She has two disabled children who she would like to kill, but she can’t because it is against the law. No opposing viewpoints were presented.
On March 17th, the Autism Society released a statement about “the tragic story of Elizabeth Hodgins,” which “shows that high stress on parents is very common in the autism community.” The statement, signed by both Autism Society presidents, blamed her actions on a lack of services. They also noted that “the divorce rate among parents with a child with autism is as high as 70 percent due to the pressure,” (this is actually a myth that was debunked in 2010). They never even mentioned George’s name.
On March 31st, Patricia Corby drowned her 4 year old autistic son Daniel in the bathtub, in San Diego, California.
***
We need to start looking at these murders as copycat crimes, which are encouraged when murders of disabled people receive positive press coverage. Just as Katie McCarron’s murder followed “Autism Every Day,” Daniel Corby’s murder follows George Hodgins’ murder, and subsequent media coverage which excused, explained away, or even promoted the murder of disabled people by our parents.
When journalists call murderers “loving and devoted parents,” when television shows give Robert Latimer airtime, when parents normalize murder by saying that all special-needs parents have murderous thoughts, the result is an environment in which these murders are seen as acceptable. Media coverage like this sends a message that homicide is a normal, understandable response to any discomfort one might experience while parenting a disabled child, and we can’t pretend that other parents of disabled kids aren’t hearing that message.
***
Let me present to you a sequence of events.
If you wrote an article about George Hodgins’ murder, or if you gave a quote for one, or if you covered it on television, or if you blogged about it, or if you commented on it,
and
if you said that no one should “judge” the murder as wrong,
if you said that Elizabeth Hodgins was “driven to murder” by George’s autism or by “lack of services,”
if you called the murder “understandable,”
if you said “it wasn’t a murder, it was a mercy killing,”
if you said “all parents of special-needs children have felt this way,”
please take a minute to wonder if Patricia Corby heard you.
Showing posts with label ableism. Show all posts
Showing posts with label ableism. Show all posts
Tuesday, April 10, 2012
Saturday, March 17, 2012
Remembering George Hodgins
[I've been asked to put a disclaimer on this post letting people know that they can repost it as part of the blogaround on the subject of the murder of disabled people by their caregivers. Absolutely, I give permission for this, UNLESS you are Autism Speaks. Autism Speaks doesn't have permission to use anything that I write. Thanks for reading.]
This is what went on the news:
This is what I said at the vigil:
Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn’t know George, but I can’t stop thinking about him. Maybe it’s because we have a lot in common – we lived near each other, we were the same age, we’re both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn’t forgotten.
In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George’s mother must have felt. But I didn’t see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I’ve seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn’t see anyone talking about how terrible it must be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.
Because he was autistic, George is being erased from the story of his own murder.
The story of George Hodgins’ death is being discussed and presented as the story of a mother who snapped, and the story of other parents who have felt the same way. It’s being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.
When disabled people are murdered by their families, this is the story people want to hear. It’s the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glen Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don’t get help to care for them.
I don’t think this is a true story.
Why is the story being told this way? Because we live in a world that doesn’t acknowledge the value of our lives as disabled people. Because so many people in our society can’t imagine a disabled person living a fulfilling life, so they don’t see the tragedy and the wasted potential when one of our lives is cut short.
As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, that our lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.
Because the story of George Hodgins’ murder is also the story of the disabled community losing one of our own. It’s the story of the other disabled people who were murdered by their family members, and it’s the story of the society that thinks so little of people with disabilities that these murders are all too often justified as “understandable.” Most of all, it’s George’s story – the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.
Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That’s not going to happen tonight. We’re here to remember the real story.
This is what went on the news:
This is what I said at the vigil:
Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn’t know George, but I can’t stop thinking about him. Maybe it’s because we have a lot in common – we lived near each other, we were the same age, we’re both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn’t forgotten.
In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George’s mother must have felt. But I didn’t see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I’ve seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn’t see anyone talking about how terrible it must be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.
Because he was autistic, George is being erased from the story of his own murder.
The story of George Hodgins’ death is being discussed and presented as the story of a mother who snapped, and the story of other parents who have felt the same way. It’s being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.
When disabled people are murdered by their families, this is the story people want to hear. It’s the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glen Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don’t get help to care for them.
I don’t think this is a true story.
Why is the story being told this way? Because we live in a world that doesn’t acknowledge the value of our lives as disabled people. Because so many people in our society can’t imagine a disabled person living a fulfilling life, so they don’t see the tragedy and the wasted potential when one of our lives is cut short.
As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, that our lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.
Because the story of George Hodgins’ murder is also the story of the disabled community losing one of our own. It’s the story of the other disabled people who were murdered by their family members, and it’s the story of the society that thinks so little of people with disabilities that these murders are all too often justified as “understandable.” Most of all, it’s George’s story – the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.
Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That’s not going to happen tonight. We’re here to remember the real story.
Friday, March 2, 2012
Recommended Reading/Watching: Revivification Edition
I used to blog a lot. Since the TPGA dialogues I... haven't, so much. I would like to again.
So to get back in the habit of throwing new text onto this website, a new Recommended Reading post, in two acts.
1) Videos
Fun fact: I can be seen in this video, and so can many of my friends!
If you haven't yet watched the Loud Hands Project video, or read about this exciting new campaign on their fundraising page, you should definitely check it out. If you haven't donated yet, there are 13 days left in which to do so!
Also from Alternate Assessment Productions comes a new take on the "shit X say to Y" meme.
2) Rebuttals
Argument: "Everyone in the special needs community needs to stop getting so darn offended and just get along!"
Rebuttal: I'll Take Offense, If You Don't Mind, by Rachel Cohen-Rottenberg
Argument: "I don't have to listen to what you say about autism because my kid is more severely affected than you/than your kid."
Rebuttal: "My Kid Isn't Like You(rs)!" by Melody at ASParenting
So to get back in the habit of throwing new text onto this website, a new Recommended Reading post, in two acts.
1) Videos
Fun fact: I can be seen in this video, and so can many of my friends!
If you haven't yet watched the Loud Hands Project video, or read about this exciting new campaign on their fundraising page, you should definitely check it out. If you haven't donated yet, there are 13 days left in which to do so!
Also from Alternate Assessment Productions comes a new take on the "shit X say to Y" meme.
2) Rebuttals
Argument: "Everyone in the special needs community needs to stop getting so darn offended and just get along!"
Rebuttal: I'll Take Offense, If You Don't Mind, by Rachel Cohen-Rottenberg
Argument: "I don't have to listen to what you say about autism because my kid is more severely affected than you/than your kid."
Rebuttal: "My Kid Isn't Like You(rs)!" by Melody at ASParenting
Thursday, March 1, 2012
Pedagogy of the Confused
Originaly published on the Navigating College blog
I became politically aware when I learned how to say “I don’t understand.” This didn’t happen until I was 20 years old.
There are some things that are harder for me to understand than others. My confusion peaked in freshman year of college, when my Women’s Studies class moved from “101” material into more abstract, jargon-heavy content. Words seemed to fly through the air without being anchored to anything so mundane as a stable definition. At the same time, I realized that what I had been taught in high school about writing thesis statements no longer applied to college: I was going to have to relearn the definition of a thesis. This would have been fine, except for the fact that I didn’t understand any of the definitions that people were giving me.
I was filled with shame about this. What kind of college student didn’t know what a thesis was? How had an introductory Women’s Studies class got so beyond me? Did I really deserve to be at college? So if I had to ask for clarification, I often pretended to “get it” after a cursory explanation, when really I was still confused.
My problem with admitting confusion was that I had internalized the idea that my worth as a student was based on my ability to understand things within the same timeframe that others did. I did not feel entitled to ask for clarification when I was confused, because this would be admitting to having failed in my duty to understand. I wanted to tell the truth about what I was thinking, so that I could learn more thoroughly. But I was afraid of being thought of as unfit to be at college, because I had internalized the idea that good students didn’t get as confused as I do.
This semester, we read Pedagogy of the Oppressed in my Education class. The author, Paulo Freire, talks about the process through which an oppressed person learns about their oppression, a process he calls “conscientization.” I underwent this process in my freshman year, and it happened because I was so very confused. After I started hitting cognitive dead ends in my classes, I got online and started reading. I learned about privilege, ableism, disability rights. I became conscious of my oppression as a disabled person. And I began to see that the ideas about what a student should be – the ideas that had caused me so much shame – were not inherent in the universe. They were a product of prejudice.
Becoming politically aware meant that I no longer felt so terrible about not fitting into society’s idea of what a student should be. I started to think that perhaps society should widen its idea of a student enough to include me. I started to think that I deserved to understand the material, even if my process was slower than that of some of my classmates. Learning about disability rights has empowered me to be in control of my education, to ask questions without shame, to sometimes try to change my environment instead of always trying to change myself. And I have learned to utter the words “I don’t understand,” without apology and in a loud, clear voice.
I became politically aware when I learned how to say “I don’t understand.” This didn’t happen until I was 20 years old.
There are some things that are harder for me to understand than others. My confusion peaked in freshman year of college, when my Women’s Studies class moved from “101” material into more abstract, jargon-heavy content. Words seemed to fly through the air without being anchored to anything so mundane as a stable definition. At the same time, I realized that what I had been taught in high school about writing thesis statements no longer applied to college: I was going to have to relearn the definition of a thesis. This would have been fine, except for the fact that I didn’t understand any of the definitions that people were giving me.
I was filled with shame about this. What kind of college student didn’t know what a thesis was? How had an introductory Women’s Studies class got so beyond me? Did I really deserve to be at college? So if I had to ask for clarification, I often pretended to “get it” after a cursory explanation, when really I was still confused.
My problem with admitting confusion was that I had internalized the idea that my worth as a student was based on my ability to understand things within the same timeframe that others did. I did not feel entitled to ask for clarification when I was confused, because this would be admitting to having failed in my duty to understand. I wanted to tell the truth about what I was thinking, so that I could learn more thoroughly. But I was afraid of being thought of as unfit to be at college, because I had internalized the idea that good students didn’t get as confused as I do.
This semester, we read Pedagogy of the Oppressed in my Education class. The author, Paulo Freire, talks about the process through which an oppressed person learns about their oppression, a process he calls “conscientization.” I underwent this process in my freshman year, and it happened because I was so very confused. After I started hitting cognitive dead ends in my classes, I got online and started reading. I learned about privilege, ableism, disability rights. I became conscious of my oppression as a disabled person. And I began to see that the ideas about what a student should be – the ideas that had caused me so much shame – were not inherent in the universe. They were a product of prejudice.
Becoming politically aware meant that I no longer felt so terrible about not fitting into society’s idea of what a student should be. I started to think that perhaps society should widen its idea of a student enough to include me. I started to think that I deserved to understand the material, even if my process was slower than that of some of my classmates. Learning about disability rights has empowered me to be in control of my education, to ask questions without shame, to sometimes try to change my environment instead of always trying to change myself. And I have learned to utter the words “I don’t understand,” without apology and in a loud, clear voice.
Thursday, December 1, 2011
How It Works
NTs with Big Ideas: We decided to create this autism-related service/ make this autism-related documentary / write this autism-related policy brief.
Autistic Advocates: Was it developed in consultation with Autistic people? Can Autistic people use this service? Are Autistic opinions featured in this documentary/piece of writing?
NTs with Big Ideas: No, we chose to focus onnon-Autistic parents and professionals.
Autistic Advocates: Why on earth would you exclude Autistic people from this thing which is about autism?
NTs with Big Ideas: Well, we had limited resources, so we could only focus on one stakeholder group. And we chose to focus onnon-Autistic parents and professionals (is that two groups? Oops, I meant we could only focus on two groups) because — um…
because parents and professionals have all the spending power
because parents and professionals have the biggest lobbies
because if we consulted Autistic people, they would want us to provide a different kind of service than the kind we want to provide
because if we consulted Autistic people, they would want us to take out this ableist rhetoric which we want to use
because it never even occurred to us to ask Autistic people about this thing
… because we did.
Autistic Advocates: Was it developed in consultation with Autistic people? Can Autistic people use this service? Are Autistic opinions featured in this documentary/piece of writing?
NTs with Big Ideas: No, we chose to focus on
Autistic Advocates: Why on earth would you exclude Autistic people from this thing which is about autism?
NTs with Big Ideas: Well, we had limited resources, so we could only focus on one stakeholder group. And we chose to focus on
because parents and professionals have the biggest lobbies
because if we consulted Autistic people, they would want us to provide a different kind of service than the kind we want to provide
because if we consulted Autistic people, they would want us to take out this ableist rhetoric which we want to use
because it never even occurred to us to ask Autistic people about this thing
… because we did.
Tuesday, August 16, 2011
The R-word and Perspective-Taking: Whose Perspective Are We Taking?
It’s amazing how much two people can disagree when they start from the same premise.
Rob Rummel-Hudson’s blog post on the movie “The Change-Up” starts off just fine. He quotes an offensive line from the movie and states his opposition to its use as humor. For future reference, the line in question is this: a man viewing his friend’s newborn twins for the first time asks, “Why aren't they talking? Are they retarded? This one looks a little Downsy.”
So yeah, that’s pretty vile. Up to this point, the author and I are in agreement. The problem begins when he starts to explain his objection to the readers. His reasoning goes like this:
“Imagine a parent with a child who has Down syndrome… let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word…. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.” Rummel-Hudson then asks his readers to imagine how this woman feels when a character on the screen delivers that particular line.
That’s right: the R-word is wrong because it’s offensive… to non-disabled people.
To me, this is as ridiculous as if the author had critiqued the movie’s (doubtless plentiful) sexist humor by writing, “Some of the men in that audience have wives and daughters! How do you think they feel?”
Because, what about people who actually have Down Syndrome? Don’t they go to movies? Don’t people with intellectual and developmental disabilities, who have felt the impact of the R-word firsthand, also appreciate edgy humor sometimes? I’m sure that hearing this kind of language disturbs many non-disabled people, but that doesn’t mean they understand the experience of being used as a punchline.
Rummel-Hudson makes sure to give us all the juicy details of the misery that disability has wrought in this hypothetical mother’s life. He tells us that she suffers when others judge her child, that the strain of raising a disabled kid has most likely damaged, if not ended, her marriage. She has trouble finding a babysitter, and her family members without disabled kids don’t understand what she’s going through.
The author seems to feel that for readers to truly understand the R-word’s impact, they must know that having a disabled child is a truly terrible fate. Shame on those scriptwriters for bringing one more tribulation into the life of this hypothetical martyred mother! Isn’t just having a disabled child bad enough?
Framed like this, the R-word issue has nothing to do with respecting people with disabilities, our identities and our language preferences. The use of the R-word in movies becomes just another way that our existence makes non-disabled people’s lives harder.
The author says that the hypothetical mother he describes is appalled when her fellow moviegoers “think her family's pain is appropriate as a punchline.” Her family’s pain? For disabled people, this type of humor strikes directly at who we are. We, in ourselves, are the punchline. What does the hypothetical mother know about that?
The author says that the hypothetical mother feels isolated by “the ones who will always place her and her child and her family apart,” that this humor reminds her of her separation from society. Her separation? Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like. What does she know about isolation?
I may be told that my response to this post indicates that I don’t have enough empathy for parents. As an autistic person, I’m used to having my opinions pathologized as a lack of empathy or an impairment in perspective-taking. In all fairness, however, I would like to point out that anyone who wants to take a lot of time to discuss the impact of ableism on non-disabled people is doing the exact same thing. I understand that some non-disabled folks have a hard time understanding a disabled person's point of view, but that doesn't make our perspectives any less important. If you can’t understand why a remark like this hurts a disabled person more than it could possibly hurt their mother, maybe it’s your perspective-taking skills that need some work.
Rob Rummel-Hudson’s blog post on the movie “The Change-Up” starts off just fine. He quotes an offensive line from the movie and states his opposition to its use as humor. For future reference, the line in question is this: a man viewing his friend’s newborn twins for the first time asks, “Why aren't they talking? Are they retarded? This one looks a little Downsy.”
So yeah, that’s pretty vile. Up to this point, the author and I are in agreement. The problem begins when he starts to explain his objection to the readers. His reasoning goes like this:
“Imagine a parent with a child who has Down syndrome… let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word…. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.” Rummel-Hudson then asks his readers to imagine how this woman feels when a character on the screen delivers that particular line.
That’s right: the R-word is wrong because it’s offensive… to non-disabled people.
To me, this is as ridiculous as if the author had critiqued the movie’s (doubtless plentiful) sexist humor by writing, “Some of the men in that audience have wives and daughters! How do you think they feel?”
Because, what about people who actually have Down Syndrome? Don’t they go to movies? Don’t people with intellectual and developmental disabilities, who have felt the impact of the R-word firsthand, also appreciate edgy humor sometimes? I’m sure that hearing this kind of language disturbs many non-disabled people, but that doesn’t mean they understand the experience of being used as a punchline.
Rummel-Hudson makes sure to give us all the juicy details of the misery that disability has wrought in this hypothetical mother’s life. He tells us that she suffers when others judge her child, that the strain of raising a disabled kid has most likely damaged, if not ended, her marriage. She has trouble finding a babysitter, and her family members without disabled kids don’t understand what she’s going through.
The author seems to feel that for readers to truly understand the R-word’s impact, they must know that having a disabled child is a truly terrible fate. Shame on those scriptwriters for bringing one more tribulation into the life of this hypothetical martyred mother! Isn’t just having a disabled child bad enough?
Framed like this, the R-word issue has nothing to do with respecting people with disabilities, our identities and our language preferences. The use of the R-word in movies becomes just another way that our existence makes non-disabled people’s lives harder.
The author says that the hypothetical mother he describes is appalled when her fellow moviegoers “think her family's pain is appropriate as a punchline.” Her family’s pain? For disabled people, this type of humor strikes directly at who we are. We, in ourselves, are the punchline. What does the hypothetical mother know about that?
The author says that the hypothetical mother feels isolated by “the ones who will always place her and her child and her family apart,” that this humor reminds her of her separation from society. Her separation? Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like. What does she know about isolation?
I may be told that my response to this post indicates that I don’t have enough empathy for parents. As an autistic person, I’m used to having my opinions pathologized as a lack of empathy or an impairment in perspective-taking. In all fairness, however, I would like to point out that anyone who wants to take a lot of time to discuss the impact of ableism on non-disabled people is doing the exact same thing. I understand that some non-disabled folks have a hard time understanding a disabled person's point of view, but that doesn't make our perspectives any less important. If you can’t understand why a remark like this hurts a disabled person more than it could possibly hurt their mother, maybe it’s your perspective-taking skills that need some work.
Monday, May 9, 2011
Domestic Hate Murder Coverage Style Guide
(GREAT BIG WARNING: This post deals exclusively with parents who murder their disabled children, and the ableism in media coverage of these murders.)
I woke up this morning to news of yet another autistic child murdered by their parent. In this case, the child is Glen Freaney, whose mother is currently on trial for strangling him last May. As usual, the grief I felt for Glen was aggravated by rage at the deeply ableist way his murder was covered in many of the articles I read. I have written before about journalists' tendency to express sympathy for parents who murder their disabled children. This time, I decided to take a new approach.
Since it is apparently very difficult for journalists to write respectfully about disabled children whose parents have murdered them, I took it upon myself to create this style guide. If you are a journalist about to begin covering one of these cases, please take these simple tips to heart:
DO NOT write that the victim “suffered from” their disability. Not only is this incorrect terminology, but it is very inconsiderate when in this case what the person really suffered from was being the child of a murderer.
DO talk about who the victim was as a person. What did they like? What were their hobbies? What were they struggling with? Did they like ice cream? What was their favorite color? If you don’t have enough space in the article to talk about the person whose murder you are covering, I recommend that you make room by cutting the obligatory paragraph where you write in horror about how they still wore diapers when they were killed, or how they would have needed 24-hour care for the rest of their life, as if these things were mitigating factors in the crime. It’s not wrong to write bluntly about the victim’s disability, but it absolutely is wrong to use the facts of the victim’s life to garner sympathy for the murderer.
DO NOT ask the readers to put themselves in the shoes of the murderer. DO NOT prominently feature the same old interviews by double-talking fellow-parents-of-disabled-children, who say that while they cannot excuse the murderer’s action, they can understand it. DO NOT seek opinions from experts on the suffering of murderous parents. DO NOT end your piece on a “thoughtful,” “balanced,” note in which you ask a provocatively open-ended question about whether society should really hold the murderer to blame for killing their own child.
DO interview the same people that you would usually interview in a murder case – the victim’s friends, teachers, faith leaders, whatever. Oh, you can also interview those of the victim’s family members who didn’t think that killing them was an awesome idea.
DO NOT lay this corpse at the feet of the special education system, or Medicare, or SSI. There are plenty of problems with each of these systems for you to investigate in detail. Please, do an exposé or five on how this country doesn’t adequately care for its disabled citizens. But DO NOT state or imply that the natural, logical consequence of these failed systems is child murder. If you want to link this specific tragic event to a larger societal ill, DO critique the ableism in a society where child murderers can find sympathy if their victims meet the right requirements.
DO use the phrase “hate crime” where appropriate. DO NOT FUCKING DARE refer to the murder as the desperate act of a loving parent. DO NOT try to tug the reader’s heartstrings with paragraphs upon paragraphs detailing the murderer’s worries for their child’s future. DO remember that if the murderer was concerned about their child’s future, they would not have prevented their child from having one.
DO remember as you write this article that when a parent murders their child, this is a bad thing.
I woke up this morning to news of yet another autistic child murdered by their parent. In this case, the child is Glen Freaney, whose mother is currently on trial for strangling him last May. As usual, the grief I felt for Glen was aggravated by rage at the deeply ableist way his murder was covered in many of the articles I read. I have written before about journalists' tendency to express sympathy for parents who murder their disabled children. This time, I decided to take a new approach.
Since it is apparently very difficult for journalists to write respectfully about disabled children whose parents have murdered them, I took it upon myself to create this style guide. If you are a journalist about to begin covering one of these cases, please take these simple tips to heart:
DO NOT write that the victim “suffered from” their disability. Not only is this incorrect terminology, but it is very inconsiderate when in this case what the person really suffered from was being the child of a murderer.
DO talk about who the victim was as a person. What did they like? What were their hobbies? What were they struggling with? Did they like ice cream? What was their favorite color? If you don’t have enough space in the article to talk about the person whose murder you are covering, I recommend that you make room by cutting the obligatory paragraph where you write in horror about how they still wore diapers when they were killed, or how they would have needed 24-hour care for the rest of their life, as if these things were mitigating factors in the crime. It’s not wrong to write bluntly about the victim’s disability, but it absolutely is wrong to use the facts of the victim’s life to garner sympathy for the murderer.
DO NOT ask the readers to put themselves in the shoes of the murderer. DO NOT prominently feature the same old interviews by double-talking fellow-parents-of-disabled-children, who say that while they cannot excuse the murderer’s action, they can understand it. DO NOT seek opinions from experts on the suffering of murderous parents. DO NOT end your piece on a “thoughtful,” “balanced,” note in which you ask a provocatively open-ended question about whether society should really hold the murderer to blame for killing their own child.
DO interview the same people that you would usually interview in a murder case – the victim’s friends, teachers, faith leaders, whatever. Oh, you can also interview those of the victim’s family members who didn’t think that killing them was an awesome idea.
DO NOT lay this corpse at the feet of the special education system, or Medicare, or SSI. There are plenty of problems with each of these systems for you to investigate in detail. Please, do an exposé or five on how this country doesn’t adequately care for its disabled citizens. But DO NOT state or imply that the natural, logical consequence of these failed systems is child murder. If you want to link this specific tragic event to a larger societal ill, DO critique the ableism in a society where child murderers can find sympathy if their victims meet the right requirements.
DO use the phrase “hate crime” where appropriate. DO NOT FUCKING DARE refer to the murder as the desperate act of a loving parent. DO NOT try to tug the reader’s heartstrings with paragraphs upon paragraphs detailing the murderer’s worries for their child’s future. DO remember that if the murderer was concerned about their child’s future, they would not have prevented their child from having one.
DO remember as you write this article that when a parent murders their child, this is a bad thing.
Friday, April 29, 2011
Supercrips make each other sad
(WARNING: This post talks about internalized ableism and suicidal thoughts)
When people hate themselves for having difficulties that I also have, or feel proud of themselves for not having to ask for help in ways that I ask for help, I have trouble knowing how to feel. It’s difficult to pull apart self-hate from the implied hatred for other people like me. It’s hard to work out how personally to take these statements.
You know how sometimes able-bodied people say to people who are visibly physically disabled, “If I was in your situation, I’d kill myself”? Obviously the disabled people feel hurt, because no one likes being told that their life isn’t worth living. It’s easy to figure out the ethical implications of that comparison when it’s a non-disabled person saying it to a disabled person. But what about, “I am also disabled and I fear that I may soon be in your situation and then I would want to kill myself?” “I am in your situation and I want to kill myself?” “People like us deserve to die?”
It’s hard not to take that personally. It’s hard respond just to the other person’s pain, and not the implications of someone else’s self-hate with regard to my disability and my life.
The idea of the supercrip hurts us all. Growing up in a society which teaches us that the only good disabled people are the ones who overcome, who never give up, we are set up for failure because eventually we will have to rest and we will have to give up. But other people lay this expectation on us again and again, and tell us yes you can do this when the continual trying is tearing our heads apart and we are begging to stop. And even though we can feel in our bodies that we have reached a limit, somewhere inside us there’s a little voice that tells us, you’re making it up, you can do this, you’re worthless if you can’t do this, why do you think you deserve accommodations, why do you think you should get to feel safe.
And this little voice gets louder and louder, and eventually the only options are being Not Good Enough or being dead, and a lot of autistic people I know sometimes lean toward being dead. Because being raised with this idea means making it a weapon, and using it to hurt ourselves, and using it to hurt each other.
When people hate themselves for having difficulties that I also have, or feel proud of themselves for not having to ask for help in ways that I ask for help, I have trouble knowing how to feel. It’s difficult to pull apart self-hate from the implied hatred for other people like me. It’s hard to work out how personally to take these statements.
You know how sometimes able-bodied people say to people who are visibly physically disabled, “If I was in your situation, I’d kill myself”? Obviously the disabled people feel hurt, because no one likes being told that their life isn’t worth living. It’s easy to figure out the ethical implications of that comparison when it’s a non-disabled person saying it to a disabled person. But what about, “I am also disabled and I fear that I may soon be in your situation and then I would want to kill myself?” “I am in your situation and I want to kill myself?” “People like us deserve to die?”
It’s hard not to take that personally. It’s hard respond just to the other person’s pain, and not the implications of someone else’s self-hate with regard to my disability and my life.
The idea of the supercrip hurts us all. Growing up in a society which teaches us that the only good disabled people are the ones who overcome, who never give up, we are set up for failure because eventually we will have to rest and we will have to give up. But other people lay this expectation on us again and again, and tell us yes you can do this when the continual trying is tearing our heads apart and we are begging to stop. And even though we can feel in our bodies that we have reached a limit, somewhere inside us there’s a little voice that tells us, you’re making it up, you can do this, you’re worthless if you can’t do this, why do you think you deserve accommodations, why do you think you should get to feel safe.
And this little voice gets louder and louder, and eventually the only options are being Not Good Enough or being dead, and a lot of autistic people I know sometimes lean toward being dead. Because being raised with this idea means making it a weapon, and using it to hurt ourselves, and using it to hurt each other.
Saturday, April 16, 2011
Headlines: Abuse and Empathy
(WARNING: this post discusses child abuse)
We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.
In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."
In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.
These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.
Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”
As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:
"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."
TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."
As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.
Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:
"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."
Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.
Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.
Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.
We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.
In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."
In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.
These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.
Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”
As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:
"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."
TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."
As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.
Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:
"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."
Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.
Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.
Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.
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.
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 Pomβen. 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 Pomβen. 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.
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
Friday, August 20, 2010
Disability and Division
One of the attitudes about autism that really bothers me is the idea that autistic people are divided into neat little groups that have nothing to do with each other. Functioning labels – “high-functioning” versus “low-functioning” – exist to separate autistic people into categories. Once these categories have been formed, it’s easy to start generalizing about differences between the groups. Some people might say that “high-functioning” autistics are valuable and “low-functioning” autistics are not. Others might say that “low-functioning” autistics are actually autistic and “high-functioning” autistics are really just normal people who want an excuse to be mean. There’s a lot of prejudice reflected in these categorizations, and no truth.
Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”
Answer: I think I have something in common with another autistic person because we are both autistic.
Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who “might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)
When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”
Those people. People like that, as opposed to people like me.
My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.
It didn’t work.
Earlier this week I was approved to start an ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.
Those people. People like that. People like me.
Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”
Answer: I think I have something in common with another autistic person because we are both autistic.
Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who “might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)
When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”
Those people. People like that, as opposed to people like me.
My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.
It didn’t work.
Earlier this week I was approved to start an ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.
Those people. People like that. People like me.
Subscribe to:
Posts (Atom)