For the record, my thoughts on person-first vs. identity-first language! This was originally published on the AAPD intern blog.
The phrase “person with a disability” seems like something that you’d find on packaging for action figures.
Which is to say that recently I verbalized a lot of things that I think about the debate regarding person-first language ("person with a disability," "person with autism") vs. identity-first language ("disabled person," "Autistic person"), and the attitudes that people often express when talking about this issue, and other disability-related discussions where those same attitudes crop up.
So basically, to me, “person with a disability” sounds like “Magneto action figure with detachable cape” – like the disability is an extra that comes with the person, but not really a part of that person. Lots of disabled folks and communities have valid reasons for wanting people to use person-first language – for example, people with intellectual disabilities often prefer to be referred to that way, and I respect that. However, when non-disabled people insist on only ever using person-first language, I often feel like it’s because they don’t want to play with the action figure until they’ve detached the disability, so to speak.
When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.
(As with my other traits, I refer to my disability with an adjective-noun construction which is common to the English language. I would also describe myself as a long-haired woman. So far no one has come forward to demand that I instead refer to myself as “an individual with long hair,” or accused me of “defining myself by my hair length.”)
I’m starting to think that when people say “defining yourself by your disability” they really mean “talking about yourself in a way that reflects the belief that your disability is not detachable.”
I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.” And I feel like this is actually sort of central to the difference between disabled identity-first proponents and non-disabled person-first proponents: they want the disability to be separable enough from us that we can hide it, pack it in a suitcase, and maybe, one day, be able to lose the suitcase forever with the help of a cure! Or, to use my earlier analogy, they want our disabilities to be like an action figure accessory that you can put on and take off, so that they can choose when to interact with and accommodate our disabilities.
So why do I use identity-first language to describe myself? Because I like my disability, but more importantly, because it is a part of me that can never be separated from my personhood. I don’t want to encourage anyone to think of my disability as detachable from who I am.
Sunday, August 5, 2012
Monday, July 16, 2012
Person With Autism Manages To Do Something
Autism is a mysterious
and puzzling disease, and children who suffer from having been diagnosed with
autism are equally puzzling and mysterious. But the remarkable actions of Joe
Autie can give us valuable insight into the mind with autism. Autie, 32, is a
person who experiences a label of autism, but has overcome his disability and
managed to do something.
Emily Expert, who has never met Autie but has met other people with autism, and knows countless people who know people with autism, runs an organization for family members of children with autism. According to Expert, “This really remarkable thing that Autie has done can help us all to understand what goes on inside the mind of a child with autism.”
Many people who make their living talking about autism agreed that it is extraordinary that Joe Autie has done something in spite of his handicaps. Experts also agreed that it was definitely Autie’s autism which caused him to do this particular thing. “We can assume that because one person with autism did this thing, all people with autism are also drawn to do this thing,” said Dr. Scientist, an autism researcher. “The question is – why?”
Of course, because autism is such a mysterious affliction, we may never know truly know why.
How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.
Emily Expert agrees, but she also cautioned that even though Autie’s actions do, of course, give us universal insight into the inner worlds of people with autism, we must be careful that none of those insights are positive in nature.
“This is a very inspiring story and has a lot to teach us about people with autism,” said Expert, “but it’s important to bear in mind that the very fact that Autie managed to do something is evidence of how high-functioning he is. Many children with autism never manage to do anything. Autie’s actions are extraordinary and praiseworthy, but they are the exception, and they definitely don’t reflect well on autism or people with autism as a group.”
----------
So yeah, that was my best shot at writing an article about autism! How do you think I did?
Here's why I'm attempting satire: this last week William LeFever, an autistic hiker who'd gotten lost in the desert, was found by a rescue team. Articles about this occurrence all featured a sentence like this: "Authorities credited autism training at least in part for helping them locate LeFever. One of the rescuers suggested searching near the river because he learned that those with autism are often drawn to water, reports The Salt Lake Tribune."
We can all spot the flaws in that logic, right? We all know that there's not actually any evidence that autistic people are "drawn to water," right? Everyone understands that LeFever was by the water not because he's autistic but because humans need water to survive, right?
Right?
The problem is that autistic people are considered so exotic and mysterious that you can say pretty much anything about autism in a news article and get away with it.
Emily Expert, who has never met Autie but has met other people with autism, and knows countless people who know people with autism, runs an organization for family members of children with autism. According to Expert, “This really remarkable thing that Autie has done can help us all to understand what goes on inside the mind of a child with autism.”
Many people who make their living talking about autism agreed that it is extraordinary that Joe Autie has done something in spite of his handicaps. Experts also agreed that it was definitely Autie’s autism which caused him to do this particular thing. “We can assume that because one person with autism did this thing, all people with autism are also drawn to do this thing,” said Dr. Scientist, an autism researcher. “The question is – why?”
Of course, because autism is such a mysterious affliction, we may never know truly know why.
How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.
Emily Expert agrees, but she also cautioned that even though Autie’s actions do, of course, give us universal insight into the inner worlds of people with autism, we must be careful that none of those insights are positive in nature.
“This is a very inspiring story and has a lot to teach us about people with autism,” said Expert, “but it’s important to bear in mind that the very fact that Autie managed to do something is evidence of how high-functioning he is. Many children with autism never manage to do anything. Autie’s actions are extraordinary and praiseworthy, but they are the exception, and they definitely don’t reflect well on autism or people with autism as a group.”
----------
So yeah, that was my best shot at writing an article about autism! How do you think I did?
Here's why I'm attempting satire: this last week William LeFever, an autistic hiker who'd gotten lost in the desert, was found by a rescue team. Articles about this occurrence all featured a sentence like this: "Authorities credited autism training at least in part for helping them locate LeFever. One of the rescuers suggested searching near the river because he learned that those with autism are often drawn to water, reports The Salt Lake Tribune."
We can all spot the flaws in that logic, right? We all know that there's not actually any evidence that autistic people are "drawn to water," right? Everyone understands that LeFever was by the water not because he's autistic but because humans need water to survive, right?
Right?
The problem is that autistic people are considered so exotic and mysterious that you can say pretty much anything about autism in a news article and get away with it.
Sunday, July 8, 2012
Disability Catch-22s
This post was first published on the AAPD intern blog.
So here are some things a lot of people don’t know about me:
About twice a month I walk in front of a moving car by accident. About twice a month I choke while drinking.
Here’s another interesting thing: when I try to talk about autism, and why I as an autistic person should have a voice in the discussion of autism, some non-autistic parents and professionals get mad at me. They say, “You’re a college student, you clearly don’t have the same kinds of problems that someone with Real Autism does. Your autism must be so mild that you are irrelevant to this conversation.” And then they start talking about what Real Autism looks like, often referencing their own children, and they’ll say things like “My kid has Real Autism that is so very real, he is unaware of dangers and might wander into the street and get hurt!” or “I worked with this little girl who had Real Autism, and she was a choking risk because she had difficulty swallowing!” And then they say “Clearly, these things never happen to you, because you can write a research paper.”
I don’t understand the ideas people have about disability sometimes.
Like, obviously not all autistic people are the same, and our disability affects us all a bit differently. But at the same time I find it frustrating that when disabled people try to advocate for ourselves, we are often immediately dismissed as “not disabled enough” just by virtue of the fact that we have opinions we want to express. This doesn’t just happen in discussions about autism – I’ve seen people with all kinds of disabilities be accused of being “not disabled enough for your opinion to count” when they start talking about their rights.
So today I was in Starbucks spitting coffee on myself and coughing, and people were asking me if I was okay and I wanted to say “I’m fine, this happens all the time,” but I couldn’t really breathe enough to talk. And what I was thinking about, as I recovered from my accidental attempt to breathe frappucino, was how angry it makes me that so many non-disabled people consider disability a moveable goalpost.
Because here’s the thing: the same person who will argue that disabled people locked up in institutions need to be there because they might walk in front of a car or choke on food or water, will then turn to me and say that even though I have these experiences fairly regularly, I'm not Really Disabled, and they can tell because I don’t live in an institution.
Can you spot the catch-22?
So here are some things a lot of people don’t know about me:
About twice a month I walk in front of a moving car by accident. About twice a month I choke while drinking.
Here’s another interesting thing: when I try to talk about autism, and why I as an autistic person should have a voice in the discussion of autism, some non-autistic parents and professionals get mad at me. They say, “You’re a college student, you clearly don’t have the same kinds of problems that someone with Real Autism does. Your autism must be so mild that you are irrelevant to this conversation.” And then they start talking about what Real Autism looks like, often referencing their own children, and they’ll say things like “My kid has Real Autism that is so very real, he is unaware of dangers and might wander into the street and get hurt!” or “I worked with this little girl who had Real Autism, and she was a choking risk because she had difficulty swallowing!” And then they say “Clearly, these things never happen to you, because you can write a research paper.”
I don’t understand the ideas people have about disability sometimes.
Like, obviously not all autistic people are the same, and our disability affects us all a bit differently. But at the same time I find it frustrating that when disabled people try to advocate for ourselves, we are often immediately dismissed as “not disabled enough” just by virtue of the fact that we have opinions we want to express. This doesn’t just happen in discussions about autism – I’ve seen people with all kinds of disabilities be accused of being “not disabled enough for your opinion to count” when they start talking about their rights.
So today I was in Starbucks spitting coffee on myself and coughing, and people were asking me if I was okay and I wanted to say “I’m fine, this happens all the time,” but I couldn’t really breathe enough to talk. And what I was thinking about, as I recovered from my accidental attempt to breathe frappucino, was how angry it makes me that so many non-disabled people consider disability a moveable goalpost.
Because here’s the thing: the same person who will argue that disabled people locked up in institutions need to be there because they might walk in front of a car or choke on food or water, will then turn to me and say that even though I have these experiences fairly regularly, I'm not Really Disabled, and they can tell because I don’t live in an institution.
Can you spot the catch-22?
Saturday, June 16, 2012
Business-NOS
So here's the deal: I haven't been blogging a lot, and my current internship requires me to blog once a week, so I may as well share those blogs here! This is my latest post from the AAPD interns blog, where you can read about the stuff that me and my fellow interns are thinking and doing.
There's a new girl in the office and her brain is weird.
One of the labels my weird brain has acquired is Pervasive Developmental Disorder Not Otherwise Specified - PDD-NOS, for short. This is an outdated term for autism, but I still harbor fondness for it because it includes the word "pervasive." My disability is indeed pervasive, affecting all areas of my daily life - including my work life, and including this internship. Being Autistic changes the way I interact with the professional world, in ways that have been - until now - Not Otherwise Specified.
I actually really like working in a formal setting. I like my Senate staff ID badge. I like suits and pleats and zippers. I like taking the metro to work, I like leather shoes, I like taking my belt off and before I go through the metal detector and putting it on afterwards. I like going places where only staffers can go. I like feeling important, or at least feeling like I am a part of something that’s important.
I like the actual work that I do most of all, but due to some things in my office being classified I can’t really blog about that in great detail, so instead I’m going to discuss the aesthetic that surrounds the work that I do, which I believe is called professionalism. On the whole, I like professionalism. I am working to get professionalism to like me.
When I was in eighth grade I was told that I would not be respected in high school, in college, or in the workplace if I couldn’t sit up straight and look someone in the eye. I was told that I’d better master “attentive classroom posture” before I moved on to advanced literary analysis or interesting job placements. Since then, I have utterly failed to overcome my autism and associated hypotonia, repetitive behaviors, and non-standard communication through sheer force of will. I am an intern with the United States government, but I still do not display appropriate “classroom posture.”
As I explore my career options I am trying to figure out what my Autistic professionalism looks like. I’m working toward a new standard of professional behavior – not a lax standard, but an accessible one. You’ve heard of business casual; this is business-NOS.
Business-NOS is when your stim toy matches your suit.
Business-NOS is elbows on the table, head in your hands.
Business-NOS is being floppy at work because you’re going to be floppy anyway and you may as well get some work done.
Business-NOS is flats only because you don’t have the gross motor skills to walk in heels. It’s trying heels anyway because you believe in the dignity of risk.
Business-NOS is networking using only scripts and echolalia.
Business-NOS is stimming and spinning in the Senate building, flapping in meetings, rocking in hearings, headphones everywhere.
Business-NOS is a standard of professionalism which does not require eye contact, stillness, or median abdominal strength. Business-NOS means putting your passion and energy into your work, not into trying to look normal. Business-NOS is knowing you do good work, and not buying into the lie that someone like you couldn’t possibly do the good work that you are doing.
This is what my professionalism looks like. How about you?
There's a new girl in the office and her brain is weird.
One of the labels my weird brain has acquired is Pervasive Developmental Disorder Not Otherwise Specified - PDD-NOS, for short. This is an outdated term for autism, but I still harbor fondness for it because it includes the word "pervasive." My disability is indeed pervasive, affecting all areas of my daily life - including my work life, and including this internship. Being Autistic changes the way I interact with the professional world, in ways that have been - until now - Not Otherwise Specified.
I actually really like working in a formal setting. I like my Senate staff ID badge. I like suits and pleats and zippers. I like taking the metro to work, I like leather shoes, I like taking my belt off and before I go through the metal detector and putting it on afterwards. I like going places where only staffers can go. I like feeling important, or at least feeling like I am a part of something that’s important.
I like the actual work that I do most of all, but due to some things in my office being classified I can’t really blog about that in great detail, so instead I’m going to discuss the aesthetic that surrounds the work that I do, which I believe is called professionalism. On the whole, I like professionalism. I am working to get professionalism to like me.
When I was in eighth grade I was told that I would not be respected in high school, in college, or in the workplace if I couldn’t sit up straight and look someone in the eye. I was told that I’d better master “attentive classroom posture” before I moved on to advanced literary analysis or interesting job placements. Since then, I have utterly failed to overcome my autism and associated hypotonia, repetitive behaviors, and non-standard communication through sheer force of will. I am an intern with the United States government, but I still do not display appropriate “classroom posture.”
As I explore my career options I am trying to figure out what my Autistic professionalism looks like. I’m working toward a new standard of professional behavior – not a lax standard, but an accessible one. You’ve heard of business casual; this is business-NOS.
Business-NOS is when your stim toy matches your suit.
Business-NOS is elbows on the table, head in your hands.
Business-NOS is being floppy at work because you’re going to be floppy anyway and you may as well get some work done.
Business-NOS is flats only because you don’t have the gross motor skills to walk in heels. It’s trying heels anyway because you believe in the dignity of risk.
Business-NOS is networking using only scripts and echolalia.
Business-NOS is stimming and spinning in the Senate building, flapping in meetings, rocking in hearings, headphones everywhere.
Business-NOS is a standard of professionalism which does not require eye contact, stillness, or median abdominal strength. Business-NOS means putting your passion and energy into your work, not into trying to look normal. Business-NOS is knowing you do good work, and not buying into the lie that someone like you couldn’t possibly do the good work that you are doing.
This is what my professionalism looks like. How about you?
Tuesday, April 10, 2012
Killing Words
[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.
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.
Friday, March 23, 2012
Don't Support Autism Speaks
With April drawing ever nearer, the likelihood that you will be asked to donate money to Autism Speaks approaches one. I encourage you not to give them your money, and this is why:
1) Very little money donated to Autism Speaks goes toward helping autistic people and families: According to their 2010 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services:
1) Very little money donated to Autism Speaks goes toward helping autistic people and families: According to their 2010 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services:
While 44% of Autism Speaks’ budget goes toward research, only a small percentage of these funds go towards research into improving the quality of life of autistic people. Most of the research which Autism Speaks funds is devoted to issues of causation and “prevention,” including the prospect of prenatal testing.
2) Autism Speaks talks about us without us. Not a single autistic person is on Autism Speaks’ Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes.
3) Their fundraising strategies promote fear, stigma, and prejudice against autistic people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertisements and “awareness” campaigns portray autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
4) Autism Speaks is not financially responsible. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with some annual salaries exceeding $400,000 a year. Additionally, their fundraising expenses exceed their spending on most of their core programs. Given these facts, Charity Navigator rated their financial health as 2 out of 4.
If you would like to donate money to organizations which help autistic people, I recommend:
- The Autistic Self-Advocacy Network (ASAN), which provides support, community, and public policy advocacy, by and for people on the autism spectrum.
- Academic Autism Spectrum Partnership in Research and Education (AASPIRE), which
brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of people on the autistic spectrum.
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, September 27, 2011
Wanting you to listen to me doesn't mean I don't want to listen to you
I've been reading people's blog posts about the TPGA Dialogues, and I think that some people think that I think something that I don't think. (How's that for Theory of Mind?) I've seen a couple different people summarize the original disagreement that Robert and I had by saying: "Robert wrote a post about how the R-word can hurt parents of special needs children, and then Zoe responded saying that non-disabled people have no right to be offended by the R-word."
I'd just like to clear this up because that's really not something that I think at all! I think the R-word is offensive, and that quality can/should/must be recognized by everyone, not just people with disabilities. I would never ask anyone not to be offended by the R-word. Please, get offended! Do it loudly! Make sure everyone knows you're offended! We need as many people as possible speaking out about this.
Here's the thing, though: I don't think that it's okay to talk about the offensiveness of the R-word without talking about how it hurts disabled people. That was my criticism of Robert's post: he wrote a lengthy essay against the use of the R-word, but the only reason he gave was that non-disabled relatives of disabled people could be hurt by hearing it. And I don't think that was appropriate, just like I don't think it's appropriate to talk about sexism and never mention the effect it has on women, or talk about racism and never mention the effect it has on people of color, or talk about homophobia and never mention the effect it has on queer folks. When you talk about prejudice, you can't ignore the people who experience it first-hand. That's all.
People have also said that I wanted Robert to "write from the perspective of a developmentally disabled person" something which he, as a neurotypical person, clearly can't do. Or they say that I expected him not to write from his own perspective. This isn't really true either. I appreciate the fact that parents/siblings/caretakers write about their experiences - they are important experiences to share. But they are not the only experiences of disability that it is possible to have. What I would have loved to see from Robert would be an acknowledgement of other people's experiences relating to the R-word, especially the people who the word refers to. In the entire post, he didn't mention that disabled people are affected by the use of the R-word at all, an oversight for which he later apologized. I was upset about this oversight, not because he was writing from his perspective, but because he left out other perspectives. That's all.
Non-disabled people, I really don't want to silence your voice. I want to hear it! But I want you to hear my voice too. So please speak out against the R-word -- but don't forget to mention the effect it has on disabled people. And please, write from your own perspective -- but don't forget to acknowledge ours.
I'd just like to clear this up because that's really not something that I think at all! I think the R-word is offensive, and that quality can/should/must be recognized by everyone, not just people with disabilities. I would never ask anyone not to be offended by the R-word. Please, get offended! Do it loudly! Make sure everyone knows you're offended! We need as many people as possible speaking out about this.
Here's the thing, though: I don't think that it's okay to talk about the offensiveness of the R-word without talking about how it hurts disabled people. That was my criticism of Robert's post: he wrote a lengthy essay against the use of the R-word, but the only reason he gave was that non-disabled relatives of disabled people could be hurt by hearing it. And I don't think that was appropriate, just like I don't think it's appropriate to talk about sexism and never mention the effect it has on women, or talk about racism and never mention the effect it has on people of color, or talk about homophobia and never mention the effect it has on queer folks. When you talk about prejudice, you can't ignore the people who experience it first-hand. That's all.
People have also said that I wanted Robert to "write from the perspective of a developmentally disabled person" something which he, as a neurotypical person, clearly can't do. Or they say that I expected him not to write from his own perspective. This isn't really true either. I appreciate the fact that parents/siblings/caretakers write about their experiences - they are important experiences to share. But they are not the only experiences of disability that it is possible to have. What I would have loved to see from Robert would be an acknowledgement of other people's experiences relating to the R-word, especially the people who the word refers to. In the entire post, he didn't mention that disabled people are affected by the use of the R-word at all, an oversight for which he later apologized. I was upset about this oversight, not because he was writing from his perspective, but because he left out other perspectives. That's all.
Non-disabled people, I really don't want to silence your voice. I want to hear it! But I want you to hear my voice too. So please speak out against the R-word -- but don't forget to mention the effect it has on disabled people. And please, write from your own perspective -- but don't forget to acknowledge ours.
Saturday, September 24, 2011
Free CeCe
More people than usual are visiting my blog right now because of the TPGA dialogues. That's great because I just found out about something really important that I think you all should know about. It doesn't have to do with autism. But it does have to do with oppression and with human beings having rights. If you can, please please keep reading.
Here's what's going on, from the website SupportCeCe. WARNING: this quote describes a really foul violent incident, which involved racist and transphobic slurs and people getting hurt.
Everything about this is wrong, down to the murder charge. Dean Schmitz died after initiating a transphobic, racist attack on CeCe McDonald and her friends. It's probable that CeCe or someone in her group killed him, perhaps by accident, while he was assaulting them. That is not murder of any degree. That is self-defense.
Here's the thing: it could so easily have been CeCe who died that night. Trans women of color die all the time for no other reason than because cis white men want them dead. And when the scenario plays out that way, it's not uncommon for the murderers to face charges that are a lot less serious than second-degree murder -- if the police bother to find them at all.
I'm furious and sad that these people attacked and hurt CeCe and her friends because of their race and gender identities. I'm so glad that CeCe survived this attack. Now she is being punished for keeping herself alive, and she needs our help.
Here are some things you can do:
- Go to http://supportcece.wordpress.com and donate money towards CeCe's bail, so that she can get out of jail and back to her family.
- Write a letter. You can write to CeCe to express your support, or write a letter to the editor about her case.
- You can distribute fliers and literature to let people know what's going on.
- Finally, if you have a blog or a tumblr or a twitter or a facebook or email or a phone or if you see people in person, spread the word. Post links, reblog, tell people about it, ask them to donate, ask them to visit the SupportCeCe website.
Let's all do something. Please. Thank you.
Here's what's going on, from the website SupportCeCe. WARNING: this quote describes a really foul violent incident, which involved racist and transphobic slurs and people getting hurt.
CeCe McDonald is a young African American transgender woman charged with “second degree murder” after an incident that began when she was violently attacked because of her gender and race.
CeCe is a creative and energetic person who, before her life was so unjustly interrupted, was studying fashion at MCTC. She had a stable home where she lived with and helped support four other African American youth, her family. CeCe’s family describes her as a leader, a role model, and a loyal friend. She is known as a wise, out-spoken, and welcoming person, with a cheerful disposition and a history of handling prejudice with amazing grace.
Around 12:30 am on June 5, CeCe and four of her friends (all of them black) were on their way to Cub Foods to get some food. As they walked past Schooner’s Bar in South Minneapolis, a man and two women (all of them white) began to yell epithets at them. They called CeCe and her friends ‘faggots,’ ‘niggers,’ and ‘chicks with dicks,’ amongst other things.
As they were shouting, one of the women smashed her drink into the side of CeCe’s face, slicing her cheek open, lacerating her salivary gland, and stinging her eyes with liquor. A fight ensued, with more people joining in. What happened during the fight is unclear, but within a few minutes Dean Schmitz–one of the attackers–had been stabbed.
CeCe was later arrested, and is now falsely accused of murder
For a month, CeCe was kept in solitary confinement “for her own protection”; she had no say in this matter. Finally, she was transferred to a psychiatric unit in the Public Safety Facility. It was nearly two months before she was taken back to a doctor to check up on the wound on her face, which by then had turned into a painful, golf ball-sized lump.
Later on, CeCe’s friends were harassed on the street by people they recognized from the scene of the fight. Individuals circled the block that CeCe’s friends were walking on and called them ‘niggers’ and ‘faggots’ and told them to ‘go back to Africa.’ When they attempted to wave down a passing squad car for assistance, the officer driving the car said he would not help them.
Everything about this is wrong, down to the murder charge. Dean Schmitz died after initiating a transphobic, racist attack on CeCe McDonald and her friends. It's probable that CeCe or someone in her group killed him, perhaps by accident, while he was assaulting them. That is not murder of any degree. That is self-defense.
Here's the thing: it could so easily have been CeCe who died that night. Trans women of color die all the time for no other reason than because cis white men want them dead. And when the scenario plays out that way, it's not uncommon for the murderers to face charges that are a lot less serious than second-degree murder -- if the police bother to find them at all.
I'm furious and sad that these people attacked and hurt CeCe and her friends because of their race and gender identities. I'm so glad that CeCe survived this attack. Now she is being punished for keeping herself alive, and she needs our help.
Here are some things you can do:
- Go to http://supportcece.wordpress.com and donate money towards CeCe's bail, so that she can get out of jail and back to her family.
- Write a letter. You can write to CeCe to express your support, or write a letter to the editor about her case.
- You can distribute fliers and literature to let people know what's going on.
- Finally, if you have a blog or a tumblr or a twitter or a facebook or email or a phone or if you see people in person, spread the word. Post links, reblog, tell people about it, ask them to donate, ask them to visit the SupportCeCe website.
Let's all do something. Please. Thank you.
Thursday, September 22, 2011
TPGA Dialogues: Adventures in Talking to People
This is as good a time as any to mention that this week we kicked off The Self-Advocate & Parent Dialogues, which is a series of letters between me, Ari, and Robert Rummel-Hudson (the parent advocate who I had that big fight with last month). The Dialogues are being hosted at The Thinking Person's Guide to Autism. I am happy -- and frankly, really surprised -- to say that I think they are going well.
The reason Robert and I agreed to do these Dialogues is because we were both really unhappy with what happened last month -- a bunch of disabled people and non-disabled parents yelled at each other a lot and then went back to their corners fuming about how they would probably never be able to work together. The thing I'm discovering, which is interesting and says a lot about the internet I think, is that it's easier to do that than to hang on and have a long conversation that involves a lot of listening.
I've seen people commenting that the Dialogues posts made them cry. I've cried, and gotten frustrated and depressed, over some of the things that people have said. It's hard to reach out and really try to engage, because that means you won't have your defenses up, and it will hurt more when someone, for example, starts getting all Suddenly Specific Definition Fallacy on you. I think for a lot of people writing posts or participating in the comments, the Dialogues have been a process of engaging, getting hurt, licking wounds, and then coming back to engage again. But so far, people are coming back. And that makes me pretty happy.
Here are the posts so far:
first I wrote a letter
then Robert
then Ari
then me again
then Robert again
Check it out for yourself and let me know how you think it's going.
The reason Robert and I agreed to do these Dialogues is because we were both really unhappy with what happened last month -- a bunch of disabled people and non-disabled parents yelled at each other a lot and then went back to their corners fuming about how they would probably never be able to work together. The thing I'm discovering, which is interesting and says a lot about the internet I think, is that it's easier to do that than to hang on and have a long conversation that involves a lot of listening.
I've seen people commenting that the Dialogues posts made them cry. I've cried, and gotten frustrated and depressed, over some of the things that people have said. It's hard to reach out and really try to engage, because that means you won't have your defenses up, and it will hurt more when someone, for example, starts getting all Suddenly Specific Definition Fallacy on you. I think for a lot of people writing posts or participating in the comments, the Dialogues have been a process of engaging, getting hurt, licking wounds, and then coming back to engage again. But so far, people are coming back. And that makes me pretty happy.
Here are the posts so far:
first I wrote a letter
then Robert
then Ari
then me again
then Robert again
Check it out for yourself and let me know how you think it's going.
Friday, September 2, 2011
Ideas for Supporting Disabled Students in School
[I wrote this last semester but forgot to post it. In my Intro to Special Education class, we were asked to generate a list of ideas that might help disabled students, especially in inclusion classrooms. Here's what I came up with. I'd like to hear your ideas!)
1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.
2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.
3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.
4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.
1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.
2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.
3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.
4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.
Wednesday, August 24, 2011
thoughts about breaking the internet
First of all, Julia wrote a beautiful post which expresses her frustrations about online conflicts between self-advocates and non-disabled parents. Yes, it is angry, and its anger is perfect and honest because so many of us have been hurt and we are angry right now. Please, please read it.
Now I’m going to talk about breaking the internet, and why I’m scared that for me, the internet will never get un-broken.
I didn’t want to start a big fight where everyone blew up at each other. I certainly didn’t want to come across as a parent-hating separatist, which, to some people, I did. What I did want to do was point out that when non-disabled people talk about ableism, it’s not okay to only talk about the impact that it has on them (and other non-disabled parents and siblings).
I was surprised at how many people disagreed with that idea. I'm not surprised anymore, but I am so, so sad. And I'm tired. And yes, I am angry too.
A lot of people are telling me I should write more carefully so as not to upset parents, but often these are the same people who are saying very hurtful things about me and my fellow self-advocates. People are telling me that I have to “look at things from the parents’ point of view,” but sometimes they seem unwilling to consider mine.
I found a gem of a blog post about this issue which included the remark, “Sadly, these ‘self advocates’ are only able to see their own struggles from their own perspective.” So I am being chastised for failing to view my own experiences from someone else’s perspective, by people who are defending their right to view make their own (non-disabled) perspective the focus of conversations on disability. Does anyone else see this as unreasonable?
I feel that for autistic people speaking out, it is only safe to tell our personal stories, that they might serve as an “inspiration” to others. If we engage with issues of policy or politics, we are told that we are speaking of things we know nothing about. We are telling parents and professionals how to do their jobs, and how dare we assume that we know better than they do?
It also seems to me that there is a very limited range of emotional expression that is acceptable. If we are angry – and I’m not talking about name-calling and swearing, just emotion – we are told that our anger makes our arguments invalid. If we are blunt and forceful, we are told that we will catch more flies with honey than with vinegar. I see people commenting about this whole mess and saying “how can you expect us to listen when you are so angry and so impolite?”
It’s true that I expect people who are interested in issues of autism and disability to listen to me. Not because I’m polite or because I will make them feel good, but because when they talk about autism, they’re talking about me, and they talk about me all the time. If you’re going to spend a lot of time talking about disability, you should listen to what disabled people have to say, otherwise – and I’m going to be blunt here – how will you know what you’re talking about?
I don’t know how we (the community of people who blog about disability from various perspectives) can resolve this conflict in an equitable way. What I do know is that I truly, desperately want to engage in productive discussions with parents about issues that matter to all of us. But I’m not willing to soften my opinions in order to do it. I don’t want to be cruel, but I will be blunt and I will be straightforward. I will not stop reminding non-disabled people of their privilege. I will hang on as tightly as I can to all the dignity I am allowed.
You can’t make a fist with your hand held out. You can’t beg for dignity. It doesn’t work like that.
Non-disabled parents, I don’t hate you, I promise. I really do want to have this talk with you. But you have to meet me halfway.
Now I’m going to talk about breaking the internet, and why I’m scared that for me, the internet will never get un-broken.
I didn’t want to start a big fight where everyone blew up at each other. I certainly didn’t want to come across as a parent-hating separatist, which, to some people, I did. What I did want to do was point out that when non-disabled people talk about ableism, it’s not okay to only talk about the impact that it has on them (and other non-disabled parents and siblings).
I was surprised at how many people disagreed with that idea. I'm not surprised anymore, but I am so, so sad. And I'm tired. And yes, I am angry too.
A lot of people are telling me I should write more carefully so as not to upset parents, but often these are the same people who are saying very hurtful things about me and my fellow self-advocates. People are telling me that I have to “look at things from the parents’ point of view,” but sometimes they seem unwilling to consider mine.
I found a gem of a blog post about this issue which included the remark, “Sadly, these ‘self advocates’ are only able to see their own struggles from their own perspective.” So I am being chastised for failing to view my own experiences from someone else’s perspective, by people who are defending their right to view make their own (non-disabled) perspective the focus of conversations on disability. Does anyone else see this as unreasonable?
I feel that for autistic people speaking out, it is only safe to tell our personal stories, that they might serve as an “inspiration” to others. If we engage with issues of policy or politics, we are told that we are speaking of things we know nothing about. We are telling parents and professionals how to do their jobs, and how dare we assume that we know better than they do?
It also seems to me that there is a very limited range of emotional expression that is acceptable. If we are angry – and I’m not talking about name-calling and swearing, just emotion – we are told that our anger makes our arguments invalid. If we are blunt and forceful, we are told that we will catch more flies with honey than with vinegar. I see people commenting about this whole mess and saying “how can you expect us to listen when you are so angry and so impolite?”
It’s true that I expect people who are interested in issues of autism and disability to listen to me. Not because I’m polite or because I will make them feel good, but because when they talk about autism, they’re talking about me, and they talk about me all the time. If you’re going to spend a lot of time talking about disability, you should listen to what disabled people have to say, otherwise – and I’m going to be blunt here – how will you know what you’re talking about?
I don’t know how we (the community of people who blog about disability from various perspectives) can resolve this conflict in an equitable way. What I do know is that I truly, desperately want to engage in productive discussions with parents about issues that matter to all of us. But I’m not willing to soften my opinions in order to do it. I don’t want to be cruel, but I will be blunt and I will be straightforward. I will not stop reminding non-disabled people of their privilege. I will hang on as tightly as I can to all the dignity I am allowed.
You can’t make a fist with your hand held out. You can’t beg for dignity. It doesn’t work like that.
Non-disabled parents, I don’t hate you, I promise. I really do want to have this talk with you. But you have to meet me halfway.
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.
Saturday, August 6, 2011
Utopian Daydream
I can’t stop having this idea.
I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.
My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.
It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.
Would we still feel "broken" if the pieces all fit together?
I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.
My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.
It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.
Would we still feel "broken" if the pieces all fit together?
Wednesday, July 27, 2011
A Bad Argument For Inclusion
This summer, I’m doing some disability-related reading for an independent study course. The first book I’m tackling is No Pity: People With Disabilities For a New Civil Rights Movement by Joseph Shapiro. Over all, I’m enjoying this book and finding it educational, though I will warn that it was written before professionals stopped using the r-word, so there’s a lot of that.
However, I’m pretty uncomfortable with the way the author discusses inclusion in schools. I support inclusive education obviously, but there are arguments in favor of inclusion that I think are terrible. Here’s one – I’ll call it the modeling argument. In No Pity, Shapiro quotes the parents of an intellectually disabled girl as saying “When Rachel is placed with retarded children she tends to act retarded.” For this reason, they prefer that their daughter be educated alongside “her regular friends” – presumably, after being placed with them, she tends to act more “regular.”
This is the modeling argument in a nutshell: kids imitate what they see. Place disabled kids exclusively with other disabled kids, and they will act disabled. Place them with normal kids, and they will learn to act normal. The assumption here is that “acting disabled” simply comes from a place of not knowing any better – from a tragic separation from proper, non-disabled “peer models.” No one considers whether “acting disabled” might in fact indicate a healthy level of self-acceptance. Similarly, “acting normal” is assumed to come from a benign process in which disabled kids befriend and observe non-disabled kids. No one considers the mechanism by which this normalization is often brought about – the bullying from peers, teachers, and parents that chips away at the rough edges. No one considers that passing is an exhausting effort which is often fueled by fear and self-hatred.
The modeling argument is about hope, but it’s the wrong hope – hope that integrated education will turn “retarded” children into “regular” ones. It’s also about fear. It is about the dread that disabled children, if allowed to socialize, will feel a sense of comfort and belonging among other disabled people. They might even come to view their natural ways of thinking, moving, and behaving as just that – natural. And we can’t have that.
So we come to see the mixture of disabled and non-disabled kids in an inclusion classroom in a surprisingly malicious way. The point is not that children of different abilities will learn to accept each other – just the opposite. According to the modeling argument, the point of inclusion is that disabled children will learn from the normies the one and only correct way to behave.
Shapiro argues that keeping Special Education segregated sets kids up for failure, because “less [is] expected of students segregated in separate classes.” I’m sure this is true. However, I believe that inclusion for the sake of normalization – the kind of inclusion supported by the modeling argument – sets children up for failure in a different way.
In a classroom with two sets of children – those modeling correct behavior and those being modeled for – disabled children will also suffer from the teacher’s low expectations of them. Disputes between disabled and non-disabled kids will consistently be resolved in the non-disabled child’s favor. Rules governing behavior will be enforced more strictly for disabled children, and relaxed for the “peer models.”
This unequal treatment can create a culture which sees bullying as a helpful way to “correct” visibly disabled behavior. It can lead teachers to use public humiliation against students, or lower students’ grades for failing to suppress symptoms of their disabilities. I have seen these dynamics play out in programs, as well as within families, which use non-disabled peers as “behavior models.” I have experienced some of this treatment first-hand.
In addition to making the classroom less safe for disabled students, an emphasis on normalization reduces the benefit of inclusion for their non-disabled classmates. In my opinion, one of the great things about inclusion is that it can teach non-disabled kids to interact respectfully with people of all abilities. However, it’s difficult for kids to learn this lesson when they are regarded as superior “peer models” or encouraged to bully their classmates into acting more like them.
I don’t think that assimilation is the only alternative to segregation. I don’t think that the point of inclusion is to teach disabled children to act “normal” in an enabled world. I believe that the point of inclusion is to create a different kind of world, and I believe there are ways of supporting inclusion that don’t lead to creating the kind of world I want to live in.
However, I’m pretty uncomfortable with the way the author discusses inclusion in schools. I support inclusive education obviously, but there are arguments in favor of inclusion that I think are terrible. Here’s one – I’ll call it the modeling argument. In No Pity, Shapiro quotes the parents of an intellectually disabled girl as saying “When Rachel is placed with retarded children she tends to act retarded.” For this reason, they prefer that their daughter be educated alongside “her regular friends” – presumably, after being placed with them, she tends to act more “regular.”
This is the modeling argument in a nutshell: kids imitate what they see. Place disabled kids exclusively with other disabled kids, and they will act disabled. Place them with normal kids, and they will learn to act normal. The assumption here is that “acting disabled” simply comes from a place of not knowing any better – from a tragic separation from proper, non-disabled “peer models.” No one considers whether “acting disabled” might in fact indicate a healthy level of self-acceptance. Similarly, “acting normal” is assumed to come from a benign process in which disabled kids befriend and observe non-disabled kids. No one considers the mechanism by which this normalization is often brought about – the bullying from peers, teachers, and parents that chips away at the rough edges. No one considers that passing is an exhausting effort which is often fueled by fear and self-hatred.
The modeling argument is about hope, but it’s the wrong hope – hope that integrated education will turn “retarded” children into “regular” ones. It’s also about fear. It is about the dread that disabled children, if allowed to socialize, will feel a sense of comfort and belonging among other disabled people. They might even come to view their natural ways of thinking, moving, and behaving as just that – natural. And we can’t have that.
So we come to see the mixture of disabled and non-disabled kids in an inclusion classroom in a surprisingly malicious way. The point is not that children of different abilities will learn to accept each other – just the opposite. According to the modeling argument, the point of inclusion is that disabled children will learn from the normies the one and only correct way to behave.
Shapiro argues that keeping Special Education segregated sets kids up for failure, because “less [is] expected of students segregated in separate classes.” I’m sure this is true. However, I believe that inclusion for the sake of normalization – the kind of inclusion supported by the modeling argument – sets children up for failure in a different way.
In a classroom with two sets of children – those modeling correct behavior and those being modeled for – disabled children will also suffer from the teacher’s low expectations of them. Disputes between disabled and non-disabled kids will consistently be resolved in the non-disabled child’s favor. Rules governing behavior will be enforced more strictly for disabled children, and relaxed for the “peer models.”
This unequal treatment can create a culture which sees bullying as a helpful way to “correct” visibly disabled behavior. It can lead teachers to use public humiliation against students, or lower students’ grades for failing to suppress symptoms of their disabilities. I have seen these dynamics play out in programs, as well as within families, which use non-disabled peers as “behavior models.” I have experienced some of this treatment first-hand.
In addition to making the classroom less safe for disabled students, an emphasis on normalization reduces the benefit of inclusion for their non-disabled classmates. In my opinion, one of the great things about inclusion is that it can teach non-disabled kids to interact respectfully with people of all abilities. However, it’s difficult for kids to learn this lesson when they are regarded as superior “peer models” or encouraged to bully their classmates into acting more like them.
I don’t think that assimilation is the only alternative to segregation. I don’t think that the point of inclusion is to teach disabled children to act “normal” in an enabled world. I believe that the point of inclusion is to create a different kind of world, and I believe there are ways of supporting inclusion that don’t lead to creating the kind of world I want to live in.
Wednesday, June 29, 2011
Recommended Reading: Writer's Block Edition
I have been trying to write a post and trying to write a post and trying to write a post. In the meantime, it has been so long since my last post that a friend from college feared that I might be dead. I have things to say! And slowly they are being typed, and eventually they will end up here. In the meantime, here are links:
Amanda recently started posting pieces of the Autistic Passing Project, which is an art project that she made using quotes from anonymous autistic people on the subject of passing. She's done an awesome job of collecting quotes and arranging them in a visually interesting way. Anyone who thinks that trying to be "indistiguishable from peers" makes autistic people happier should read this.
In response to the ridiculousness of Simon Baron-Cohen's latest book, autistic author Rachel Cohen-Rottenberg started the website Autism and Empathy. She has collected a bunch of academic articles refuting the lack-of-empathy myth. She's also accepting submissions!
Why So Much Abuse Is Allowed to Continue in Residential Care is an excellent article published, surprisingly, by TIME. It discusses human nature, Milgram, and the corrupting influence of power. The author also suggests policies which need to be put in place to reduce institutional abuse, such as surprise inspections. The article's one failing is that it does not mention de-institutionalization, which is, of course, the best way to keep disabled people out of abusive institutions.
Finally, here's an awesome disabled historical figure: Götz von Berlichigen, a badass sixteenth-century knight who used a very advanced prosthetic arm and pioneered the phrase "kiss my ass."
Amanda recently started posting pieces of the Autistic Passing Project, which is an art project that she made using quotes from anonymous autistic people on the subject of passing. She's done an awesome job of collecting quotes and arranging them in a visually interesting way. Anyone who thinks that trying to be "indistiguishable from peers" makes autistic people happier should read this.
In response to the ridiculousness of Simon Baron-Cohen's latest book, autistic author Rachel Cohen-Rottenberg started the website Autism and Empathy. She has collected a bunch of academic articles refuting the lack-of-empathy myth. She's also accepting submissions!
Why So Much Abuse Is Allowed to Continue in Residential Care is an excellent article published, surprisingly, by TIME. It discusses human nature, Milgram, and the corrupting influence of power. The author also suggests policies which need to be put in place to reduce institutional abuse, such as surprise inspections. The article's one failing is that it does not mention de-institutionalization, which is, of course, the best way to keep disabled people out of abusive institutions.
Finally, here's an awesome disabled historical figure: Götz von Berlichigen, a badass sixteenth-century knight who used a very advanced prosthetic arm and pioneered the phrase "kiss my ass."
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.
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