28 December 2011

"People First - Create an Environment of Respect"

That was the subject line of an email I received in response to the Chris Baker petition. But the email and my response to it speak far louder than any commentary I could make here.

Trigger warning: Hostility, ableism, and all that fun stuff.



Original email:


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


My response:


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-first-language-why-it-matters.html) and the second is called "Identity and Hypocrisy: A Second Argument Against Person-First Language" (or http://autistichoya.blogspot.com/2011/11/identity-and-hypocrisy-second-argument.html).

Lea 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-first-language), 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.

Yet, 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


______________

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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30 comments:

  1. Love your explanation. Person first language seems to insinuate something is wrong. And while I somewhat understand that people are uncomfortable with labels, they are none the less, often important and necessary. Half the battle is getting the general population to recognize Autism as a neurological difference instead of the "disease model."

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  2. It's baffling to me how persistent people are about this. "People-first" and "Autism-first" language are equally clear and understandable, so the only issue should be respect. As a result, I generally don't bother people who use "people-first" language because I know that some people with autism actually prefer it, and I (perhaps too charitably) assume that the writers are trying to be respectful toward people. But the least they could do is to also not bother people who use "autism-first" language after being informed that at least some people identify as "Autistic." Once they're assured that the speaker is being thoughtful and has at least some justified reason for thinking their word usage is respectful, they should just drop the objection and move on.

    Would you go up to someone who self-identifies as "Black" and insist that they call themselves "African American"? Or tell a self-identified "Jew" that that's a derogatory term and they shouldn't use it? I hope not.

    It's just sort of ridiculous how much text has to be wasted on this issue. It's simple: call people what they want to be called. Problem solved!

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  3. I am the mother of an autistic child and I have received similar emails and tweets like you mention. I find that the people who are so adamant about their person-first argument are doing it because at some point they learned that it was the politically correct thing to do, but not because an autistic or a brain injured person has actually told them that it's what they prefer. My argument is usually "this is what I'm going to say, until my son tells me he has a preference, because it's not about political correctness, it's about what HE wants."

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  4. It seems to me that putting a stop to corporal punishment (including restraint and seclusion) of all American schoolchildren, Autistic or otherwise, is more important than any petty linguistic issue.

    Michael Goldfield
    Parents and Teachers Against Violence in Education
    www.nospank.net

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    Replies
    1. Try going to school as an autistic child sometime then, Michael.

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    2. As an Aspie myself I think you are misinterpreting Michael. He is not saying that what autistic individuals (or persons with autism (sic)) suffer is unimportant. Rather he is stating that the linguistic/semantic issue of whether I use person first language or not is unimportant compared to the issue of violence against school children of any persuasion.

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  5. BAM! And that's how its done. Kudos Lydia, you've opened my eyes. Thank you for your educating with insightful response!

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  6. omg hahaha I was going to email this article to you and then I read the blog title (autistic hoya) and realized YOU were the author

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  7. "i find myself unable to sign this petition to help improve a bad situation because there is a dangling modifier on pg 2, and a comma that should have been a semicolon on pg 3."

    really?

    It's so sad how often we lost sight of the big picture because some minor detail. Im not saying that PFL isn't important , but IMO not nearly as important as a child (autistic or not) being abused by an employee of a Public School Board.

    Magnficent response Lydia, i especially like this: "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 really hope the person that wrote you sits with this for a while.

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  8. Wait. Was there a dangling modifier or an accidental comma?

    In other news, the person who wrote this letter responded, if you can believe it, with an even more arrogant and condescending email. I did not respond to it, although I had some thoughts about it.

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    1. Was wondering about their response...

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  9. Myriam Alicea-GomezJanuary 7, 2012 at 7:34 PM

    I totally agree Lydia. Thank you for the insight from your perspective as an autistic adult. I am the mother of an autistic child and I hate it when people correct me. I always answer back..."but he is autistic". If he had diabetes I would say he is diabetic.

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    Replies
    1. When I read this statement, I did not quite know how to respond. It implies a parallel between being autistic and having diabetes.

      I have diabetes. It is hell. Because my brain exhausts fuel at a faster rate when I am focused upon a subject, it can be the equivalent of being a car with a broken fuel tank. I have had blood glucose readings of 0.7 mmol/l in the past (for our American friends, this is basically "how is it you are able to stand up, leave alone walk out of here?" level).

      Which brings me to the point I am sure you already know I am about to put out. Diabetes and autism have nothing in common. Unlike my autism, where threats to cure result in a solemn promise to cut the promiser into little pieces and post them to whomever, we want a cure for diabetes yesterday. In fact, if a research team announced tomorrow that they had found a viable cure for diabetes, people would continue to kiss the ground they walked on for at least a century thereafter.

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    2. Dean,

      You are of course correct that autism and diabetes are unrelated. One is a neurological state. The other is a physical illness. However I dare say that most parents of low functioning autistic spectrum individuals, and most of the individuals themselves likely, might want a cure.

      Autism is a spectrum. There are definitely those ASD sufferers whose daily quality of life is so poor that they would want a cure.

      Conversely, while many like you, and I, feel that seeking a cure for autism per se is non-desirable. I certainly would kiss the ground I would walk on if I could find cures to certain of the symptoms of my own spectrum condition.

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    3. I say I'm asthmatic, and I hate having asthma. I just don't care if I use PFL for it or not. It doesn't really make any difference whether I say I'm asthmatic or I have asthma - my lungs work the same either way.

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  10. Lydia, there was no dangling modifier. It was actually a joke. I am so proud of you for doing what you did. I worked with autistic kids for a long time. I just realized that the people that told me to change the language were the staff. Yes, "Politically correct" is what the situation is here. Very sad that the public school system can manipulate all of us into what is right and what is wrong. When we have disorders and go to them for help learning, they manipulate us into thinking that their way is the only way. I am so sad seeing my children going through the system now. There is much wrong with it, even though they integrated us into the general population, they didn't learn how to treat us with humanity. Good luck, Lydia. Many prayers to you.

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  11. Rather than simply saying yes a child should not be placed in a bag as punishment and whether you refer to that child in whatever manner you choose - sign the petition and stop the abuse. The author of the original letter was, IMO a person who is a moron. Or a moronic person - take your pick!

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  12. Wow. Then just don't sign the petition. I must say I've never heard of FPL before so please pardon my ignorance. Thank you for educating me. With that said I will sign the petition just because of what happened to "Chris", it was WRONG!

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  13. What an excellent response. Good for you, Lydia. I am a voice and music teacher, and have had the privilege of teaching 2 students on the autism spectrum, both of whom are exceptionally brilliant people, and one of them is a musical genius. They are Aspergian (as they like to say), and neither has expressed an opinion on the subject of PFL. I will have to ask them what they think, if it matters to them, and if it does, why it matters either way. As you point out so well, it is a matter of preference, and each should make up their own mind!! Yes, this woman who wrote that is arrogant as can be!! I can't believe she would respond to this letter with more arrogance. You show a lot of class to not respond again, as this is not an issue that is even arguable. Personal preference is exactly what it is. You are also showing great class by NOT publishing her name....or her email....because if you had, I probably would have been unable to be as classy as you are, and would probably have fired off an email to her myself.

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  14. It is quite amazing to me that the individual that wrote the complaint about the language managed to loose the entire point of the petition. As a rehabilitation professional, the PFL language was pushed during my education for political correctness. That has not prompted me to correct a patient calling to schedule physical therapy to not call himself an "amputee" instead of a person with an amputation. All I can say is we should focus on the purpose of the petition which is to stop the abuse that is happening.

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    Replies
    1. I agree. I work with autistic adults and we were taught the PFL. But when the individuals' parents refer to their autistic son or daughter, I don't correct them or anyone else I hear say it. I've heard Temple Grandin speak and she refers to herself as an autistic woman.

      I am with everyone that the woman totally missed the point and I couldn't believe what I was reading and had to re-read it.

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  15. First, please forgive me, I am not an FPL expert, nor do I want to imply that I am even as educated on the subject as I should be. Regardless of my knowledge of the subject, what strikes me is the absurdity of this person, who is not Autistic, assuming they have the right to tell you how to refer to your own self or others in your community (forgive me if this is not the correct term, it is not meant to insult). The imagined omnipotence of this person suggests that they somehow believe that you aren't intelligent enough to know on your own how to speak about a subject that you are clearly more educated. To imply that they are sensitive to the language used to describe this group of people, then to assume that you, as a part of this group of people, need instruction on how to speak is a complete & total insult. Thank you for your explanation on the subject. You have far more class than I ever will; my response to something like this would not have been nearly as civilized or educational.

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  16. Lydia, thank you.

    I have been having the "pleasure" for far too long of partaking in what Queensland (the Northernmost of the three states in Australia with cities that count for anything) calls services. In places that are not at least suburban, if you are autistic and an adult, you are basically an unperson. And as I have said multiple times to the service that will not get out of the way or help me find a more appropriate one, inappropriate or mismatched assistance is not preferable to none at all.

    But I digress. What is important here is that I have had to instruct these people, and people on pages like Every Australian Counts (unless they are autistic, apparently) that I am not an adult with autism, but an autistic adult. The responses I get are so arrogant, condescending, and in some cases threatening, that I have been linking posts like this to them and saying "the tide is turning against you, separationists".

    It is this last point I think you should go into more. "X with autism" implies that autism is somehow separate to me, as opposed to something that has shaped and moulded my reception and perception of every bit of sensory information I have received since I was born. I used to think that I was going too far when I told people who persisted in such language that they may as well go into aboriginal communities and start using "X with blackness". After reading your post, and seeing videos in which your post was quoted, I feel I should have pushed that point further. When an organisation that meets the definition of terrorism proposes to cure an autistic adult like me of everything that makes him different to his abusers, everyone is patting them on the back. If I were to go on national television and propose to cure Oprah of being black, there would be outrage. It is our children and their children who are going to suffer the consequences of that disparity if we allow it to continue. And the tolerance for people openly telling us we should be cured of what we are or what separates us from those abusing us starts with language like "X with autism". Get rid of that, and people will question the curebie culture a lot more.

    I think you should post this asshole's further writings to you, by the way. Let everyone in the world see the "X with autism" people for what they so often prove themselves to be. You need not necessarily respond to it, but just letting people see for themselves what these folk are really like is often the best weapon we have.

    Thank you again. This post and others like it I have found recently have proven the best morale boost I have had in years.

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    Replies
    1. Thank you for your comment, Dean. I've actually written two earlier articles on this topic, which argued more specific points. One is "The Significance of Semantics: Person-First Language: Why It Matters" and the other is "Identity and Hypocrisy: A Second Argument Against Person-First Language."

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  17. Do you ever plan on posting that arrogant *****'s reply? Better yet, can you give me a name so I can organize a flurry of "We are autistic, not people with autism" posts on FB?

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  18. Marc - I guess that reply was too disgusting to post anywhere. The sort of arrogance found only in zealots for the side that's currently winning the bullying war. I'm sure L would have posted it by now if there wasn't good reason not to.
    Sincerely, Person with bl**dy nerve.

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  19. Is there a special reason to capitalize those adjectives that are about disabilities? Isn't that segregating them from adjectives that are about other human traits?

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  20. I agree with you. Lydia. In fact, since learning about identity first language, I use that where possible, only deferring to person first language for those who prefer it. That is, I will refer to fellow Autistic individuals as 'Autistics' or 'Autistic people' over and above the wishes of even their relatives unless the Autistic individual themselves states that they prefer to be called otherwise.

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