30 December 2011
28 December 2011
Lydia,I respect and will eventually support your cause via Change.org. However I cannot in good consciousness sign such a disrespectful petition.In the past "People First Language" has been the greatest of movements and arches into our modern day understanding of ALL people.In your petition you continuously mention that Chris is "...an Autistic Student". This implies that Chris is Autistic, rather than Chris has Autism. By perpetuating this exclusive language, you and others are singling out Chris. He is a person first. No more and no less than you or I.The correct usage would be to say: In Mercer County, Kentucky, nine year old Chris Baker has autism [or a diagnosis of ...], was told.."complete extensive education regarding respectful treatment of Autistic students"I applaud your consideration and concern for the teacher. The need to educate that person and in fact the entire school aboutstudents who have Autism or that may be diagnosed with Autism Spectrum disorders is admirable.Kind Regards,[Name redacted]Advocate for People and Families Living with Brain Injury
Dear [name redacted],Thank you for writing. While I appreciate your concerns and the reasons behind them, I respectfully disagree with your conclusions, especially as written in such a disrespectful email, and I am speaking to you as an Autistic person. I am Autistic, and that is how I identify myself. I, like the majority of Autistic adults and youth, intentionally do not use person first language to refer to ourselves or others who are also Autistic. The Blind and Deaf communities, like the Autistic community, have come to the same conclusion, with the majority of their and our constituencies choosing to use the proper adjective or noun in place of person first language.We are aware that the majority of other disability groups or communities, including the traumatic brain injury community, prefer to use person first language, and the default for most of us is to defer to the majority consensus of the people with that disability or disabled in that particular way. For example, in reference to intellectual disability, the prevailing majority consensus among that community is to say "person with an intellectual disability," and so in reference to a person with intellectual disability, we will typically defer to that language; however, in reference to autism, the majority of adults and youth on the autism spectrum prefer to say "Autistic person," and so in reference to a person on the autism spectrum, we will typically say "Autistic person." The exception is for the minority of adults and youth who explicitly prefer to be identified as "persons with autism," and in reference to those specific individuals, that language will be used.In this respect, the language that I have chosen -- which I have done so very intentionally and thoughtfully -- is the most respectful language that I can use, because it defers to the majority consensus of the population so described. When very well-meaning and well-intentioned advocates and members of the community writ large such as yourself insist that we use certain language to describe ourselves against our own stated and explicitly argued wishes, you are essentially telling us what offends us. I, and many others in the community of Autistic adults and youth, do defer to the majority consensus of any disability group when referring to people from those respective disability groups, because that is following the wishes of the constituency so described. I ask respectfully that you do the same in reference to us.Jim Sinclair, one of the first Autistic people to extend the principles of the disability rights movement to the Autistic community, wrote a seminal essay in 1999 entitled "Why I dislike 'person first' language," which you can read at this link (or here: http://www.cafemom.com/
journals/read/436505/). Since then, a number of Autistic people of all levels of visible or invisible disability, have written similar essays, including myself. I have personally written two essays that articulate all of the reasons why I do not ascribe to person-first language, one republished at the Thinking Person's Guide to Autism among other locations, and the other located at my own blog, on the topic. The first is called "Person-First Language: Why It Matters (The Significance of Semantics)" (or http://thinkingautismguide. blogspot.com/2011/11/person-) and the second is called "Identity and Hypocrisy: A Second Argument Against Person-First Language" (or http://autistichoya. first-language-why-it-matters. html blogspot.com/2011/11/identity-). and-hypocrisy-second-argument. htmlLea Ramsdell, writing about identify politics, asserts that "[l]anguage is identity and identity is political." The majority of us who are Autistic and who prefer to be identified as Autistic people do so because being Autistic is as much a part of our individual identities as being American, Christian, or Asian are for me. I do not refer to myself as a person with Americanness, Christianess, or Asianness, and thus I am not a person with Autism either. It is not an inherently good or bad thing to be American, Christian, or Asian, nor is it an inherently good or bad thing to be Autistic. It is simply a part of my identity. Autism is not something from which I can or ought to be separated.You yourself write "He [Chris] is a person first. No more and no less than you or I." which to me is only a further representation of why person-first language cannot and should not be applied to person first language [sic: should say "autism"]. Use of person first language implies that there is some additional need to verbally recognize the humanity of the person so described, as if by him or herself, he or she does not quite qualify for personhood. Why can I say that I am American or that I am Christian or that I am Asian and do so without fear of being called insensitive or disrespectful to other people who could be described that way? Because we have in our society come to terms with accepting those labels as identity labels, and that people who can be described with those labels are inherently people. We have not yet done that with autism, although recognizing that a person is Autistic ought simply to be recognition of that person's humanity -- as an Autistic person.Elesia Ashkenazy, also an Autistic and Deaf person, wrote a petition on Change.org explaining very briefly some of the reasons why we do not ascribe to the use of person-first language (http://www.change.org/ petitions/understand-autism-), that you may also find to be of interest to yourself. I think a quote from my own essay (the first one linked) summarizes it well. first-languageYet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.Stating that I am Christian or American or Asian recognizes that I am different from Muslims or Atheists, Egyptians or Koreans, or Africans or Europeans. It does not mean I am lesser because I am not the latter category. It does not mean I am less human -- or more human. These are descriptor labels of identity. We understand the word Autistic or phrase "Autistic person" in the same way. It is an identity label, and one that may be more or less important to specific individuals whom it describes (as labels like Christian or American or Asian may be more or less important to specific individuals whom they describe), but it is an accurate and honest means of describing my identity. I am Autistic.Thus, while I thank you for your time in sharing your thoughts with me, I must share why I have come to the opposite conclusion firmly and resolutely, having read and understood the reasoning behind use of person-first language in reference to autism, and being myself an Autistic person or a person who is Autistic. If you can, please take the time to explore the links that I have shared with you, as those articles provide additional information about why the majority of Autistic adults and youth prefer to identify as Autistic rather than "persons with autism." If you sincerely wish to engage in respectful dialogue with and about Autistic people -- and I believe that you do -- then please take into consideration that those of us who are Autistic have the right to determine what we consider to be respectful language.
Blessings and peace,
Lydia Brown[contact information redacted]Do you know an Autistic student preparing for or attending college or university? The Autistic Self Advocacy Network has announced the publication of Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults. For more information, visit the Navigating College website, or to order a print copy, visit the University of New Hampshire Institute on Disability bookstore."Evil is not the absence of righteousness but of empathy."
— Mohsin Hamid
"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."
— Albert Einstein
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22 December 2011
LOUISVILLE, Ky. (AP) — A 9-year-old autistic boy who misbehaved at school was stuffed into aduffel bag and the drawstring pulled tight, according to his mother, who said she found him wiggling inside as a teacher's aide stood by.
The mother of fourth-grader school employees responsible.said her son called out to her when she walked up to him in the bag Dec. 14. The case has spurred an online petition calling for the firing of
"He was treated like trash and thrown in the hallway," Chris' mother,, said Thursday. She did not know how exactly how long he had been in the bag, but probably not more than 20 minutes.
Chris is a student at Mercer County Intermediate School in Harrodsburg in central Kentucky. The day had barely begun when his family was called to the school because Chris was acting up. He is enrolled in a program for students with special needs.
Walking toward his classroom, Baker's mother saw the gym bag. There was a small hole at the top, she said, and she heard a familiar voice.
"Momma, is that you?" Chris said, according to his mother.
A teacher's aide was there, and Baker demanded that her son be released. At first, the aide struggled to undo the drawstring, but the boy was pulled out of the bag, which had some small balls inside and resembled a green Army duffel bag, Baker said.
"When I got him out of the bag, his poor little eyes were as big as half dollars and he was sweating," Baker said. "I tried to talk to him and get his side of the reason they put him in there, and he said it was because he wouldn't do his work."
Baker said when school officials called the family to pick him up, they were told he was "jumping off the walls." Days later, at a meeting with school officials, Baker said she was told the boy had smirked at the teacher when he was told to put down a basketball, then threw it across the room.
At a meeting with school district officials, the bag was described as a "therapy bag," Baker said, though she wasn't clear exactly what that meant. She said her son would sometimes be asked to roll over a bag filled with balls as a form of therapy, but she didn't know her son was being placed in the bag. She said school officials told her it was not the first time they had put him in the bag.
21 December 2011
09 December 2011
- Beginning of letter, introduce yourself (name, city and state) and your connection to autism (if any), as well as any organizational affiliations or professional credentials.
- If a phone call, ask politely for "Mr." or "Ms." [name].
- Be respectful, using proper greetings and forms of address, even if you think the subject(s) deserve(s) no respect.
- Be polite, as this always adds power to your words. Polite here meaning writing in such a way where you do not intend to offend or insult.
- Use proper grammar, spelling, capitalization, and punctuation. This adds professionalism.
- Be succinct. Don't write a ten page novel. The subject will not read it. Guaranteed.
- Be personal, if you have a personal story or connection. Make sure the subject knows why you care.
- Be firm. You know you are in the right.
- Explain why this is wrong. Tell the subject why it is wrong to criminally charge an Autistic person for an action that wasn't malicious, intended to be harmful, or offensive (meaning unprovoked).
- Demand that charges be dropped immediately.
- Conclude by thanking the subject for his or her time and consideration.
- Sign with a professional greeting in a letter.
- Include your full name, city and state, and address (home or work) at the top of the letterhead or beneath your signature in a letter.
07 December 2011
05 December 2011
28 November 2011
I keep being reminded of the philosophy behind “person-first language,” which I have discussed and critiqued at length in a previous article. Let me now ask a different set of questions and explore a different set of arguments, which I have not heretofore had the opportunity to present.
I am Asian, in regards to race, and Chinese, if you go by ethnicity. I am American if you go by nationality. I am Christian in regards to religion, and Liberal, if you go by politics. I am female. I am Autistic.
None of these cultural descriptors are inherently good -- nor are any of them inherently bad. It is not an inherently good thing to be Asian or American or Christian, and it is not an inherently bad thing to be Chinese or Liberal or female. There may be aspects or consequences of my identity as an Asian or American or Christian that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese or Christian or female that are disadvantageous, useless, detrimental, or unpleasant. The converse statements are also true.
If this is true of these cultural labels, why is it correct to say that I am Asian, or that I am Chinese, or that I am American, or that I am Christian, or that I am Liberal, or that I am female, and for some reason incorrect to say that I am Autistic? Would I say that I have Asianness, or Chinese-ness, or that I have Americanness, or that I have Christianness, or that I have Liberalness, or that I have femaleness? Those statements are ridiculous. They are considered incorrect because these identifying adjectives are precisely that -- markers of my identity. Not one of them is the sole component of my identity, but they overlap and interact and form the foundation for who I am and how I exist in the world.
This is true of autism. “Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic. I am also Asian, Chinese, American, Christian, Liberal, and female.
These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.
Some Autistic people choose to engage more actively with Autistic culture and community, and others would prefer not to involve themselves in the larger community. So? Some Christians choose to engage more actively with Christian culture and community, and others would prefer to avoid Christian-focused events or communities. Some Asians choose to engage more actively with Asian culture and community, and others do not.
It simply shows the importance assigned by an individual to the various aspects of that individual’s identity. But these factors remain equal as inherent parts of that individual’s identity regardless of the individual’s choice to tap more deeply into one or another of those aspects and not others.
Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”
It’s nonsensical. While I do know that there are people on the autism spectrum or from other parts of the disability community who prefer person-first language, the vast majority of people whom I know are in agreement with my objections to its use and consequences, especially in terms of shaping and reflecting societal attitudes. (More has been written on that in my first argument.)
Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.
20 November 2011
- Some Alternatives to Simulation Exercises
- The Wrong Message
- The Wrong Message -- Still
I joined Georgetown University's disability awareness club, DiversAbility, now in its third year, upon arriving at campus. During one of our previous meetings, one of the club's officers mentioned that we will be hosting an "Ability Lunch," which had been done last year, in which people sit at different tables and simulate different disabilities -- for example, wearing a blindfold to simulate blindness or having one’s arm tied behind one’s back to simulate inability to use a limb or lack of a limb -- while eating lunch. I immediately raised objection to the idea, and was told that the discussion following the lunch included criticism of the event.
If that is so, if the flaws in holding such an event are recognized, then why is this event held?
I am in very strong opposition to the idea of the Ability Lunch for the same reasons that I stood alongside the Autistic community in 2010 when a well-meaning individual decided to declare Nov 1. as “Communication Shutdown Day.” The idea behind Communication Shutdown Day was that non-Autistic people could experience the social isolation and communication difficulties that Autistic people often have by not accessing online social networks or websites for the entire day.
Beside the fact that the Internet has provided an incredible forum and means for Autistic people to communicate with one another about issues that affect our community in ways that we were unable to access prior to the widespread use of social media and e-mail, the idea of Communication Shutdown Day in no way reflects the reality of living as an Autistic person.
A non-Autistic person spending one day without using social media will not understand the inherent differences and difficulties we face in social communication with non-Autistic people, the majority of which occur offline and face to face. A non-Autistic person who spends one day without using social media is not experiencing Autistic life. Autism is more than social challenges. The Autistic experience includes an array of sensory and information processing differences -- some of which are disabling -- and these are programmed into our neurological systems from birth through death. You cannot simulate being Autistic by shutting down Facebook for a day.
The mere suggestion that this is a way for non-Autistics to empathize with Autistic people is absolutely ludicrous. It is lacking in empathy entirely. If you want to get into our shoes, you need to understand the reality of what it is like to live Autistic day to day for a lifetime, and that is not something that can be done by a one day “simulation” of not accessing social media.
Similarly, it is absolutely ridiculous, if not outright offensive, to think that a non-disabled person can simulate a disability for an hour or two and therefore understand what it is like to live as a disabled person. The idea is well-meaning, but well-meaning people often blunder and harm in their good intentions in the absence of context and greater understanding. No amount of “good intentions” will change the nature of this event.
It is a farce. It is a feel-good opportunity for some non-disabled people to pretend to be disabled for an hour so that they can go home and say, “I understand what it’s like to have a disability.”
It is the equivalent of a non-Catholic attending mass, expecting to come away from the experience with an understanding of what it means to be devoutly Catholic. It might be a nice or interesting or strange experience, but in absolutely no way will this non-Catholic individual have any grasp on what it means to be devoutly Catholic in one’s lifestyle after going to mass once.
None of the non-disabled people coming to the Ability Lunch will have any true grasp on what it means to live as a disabled person in our society because they are not disabled. The very idea or suggestion that this “Ability Lunch” will somehow create this type of “in their shoes” empathy is unfounded and untrue. It won’t. The only way to do that is to have actual dialogues with disabled people to share experiences, coming as peers and equals at the discussion table. To listen to the voices of disabled people discuss what being disabled means in their individual lives. To recognize agency and give respect. To understand that it is impossible for a non-disabled person to truly experience disability, and that it is impossible likewise for a disabled person to truly experience not being disabled. To recognize the limitations of any type of disability “simulation” and to host disability awareness events that do not marginalize, diminish, demean, reduce, and devalue the realities of the varied experiences of disabled people.
No pity. No fear. No patronizing.
Nothing about us without us!