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Wednesday, May 16, 2012

Person With Sarcasm

Okay. . . fair warning.  This post turned into "War and Peace".  Except I never read "War and Peace". . . alright. . . um. . . it turned into "Gravity's Rainbow".  It's long.  My point is, it's really really long.  And it's probably preachier than I want to be, but I've given this topic a lot of thought, and since it's MY blog, I guess I can afford to be a little self-indulgent.  I'll proofread tomorrow. . . 


I started writing this post as a tongue-in-cheek transparently thin reference to my take on the whole "person first language" issue, but got sidetracked.  Some caveats and clarifications. . . it is not meant to trivialize autism(in fact that is the LAST thing I want to do), it IS, however, meant to trivialize the heated debate about person first language when referencing autism .  Also, I want to say that although the debate itself seems trivial to me, I do recognize the importance of using language that is inoffensive to the stakeholders being referenced.  So, although the entire debate seems ridiculous, I understand it's also necessary and even important to decide on terms and usage to avoid giving offense.  


I started writing my "take" and then took a break, realizing I would have to borrow heavily from other sources who have covered it with more thought, and sensitivity than I am able.  VERY smart people who are VERY good writers covered it ad nauseum from all angles.  But I was still left a little empty.  Maybe I'm the perfect person to cover this issue because my PERSONAL viewpoint is, in general, "I don't give a shit."  


That's not fair to me.  I DO give a shit.  But it doesn't personally offend me either way.  What I DO care about is being inoffensive to others, and to that end I will ernestly apologize for having given offense if I use terminology that is offensive to someone and adopt language that they find less offensive.  


What is Person First Language
First, to anyone who isn't heavily involved in reading blogs involving autism or disability (blog first terminology. . . it's appropriate because blogs CAN be separated from autism even if they are sometimes focused on it. . . see what I did there?  If you don't, read on, I'll explain) "person first language" is the idea that when you refer to an autistic person. . . you instead say "person with autism".  The main reason seems to be that by referring to the person rather than the disability, you are saying, "I see a person first and a disability or condition second.  I see a son or daughter or friend or cousin first."  I like the idea to some extent.  It makes sense to me.  It smacks of PC speech, which I think sucks ass in general, but the idea of PC speech, which is to attempt to be sensitive or at least inoffensive to others, is a good one.  So, quick and easy recap:  Person first = person with ______.  
Look at the CHEEKS!!!


How I refer to my daughter
I refer to Lily as "my daughter".  If I had adopted a child of a different race, say Asian, I would still refer to her as "my daughter", not my Asian daughter.  If she were gay, I'd still refer to her as "my daughter" not "my gay daughter".  I mention this only because to ME that is truly "person first" language.  


How I refer to my (spoiler alert) autistic daughter 
When I feel it's appropriate to reference her diagnosis, I refer to Lily as my "autistic daughter" rather than "my daughter with autism" almost entirely because, having read the points of view of the autistic self-advocates, that seems to be THEIR preference.  Let me use the example that might make more sense to someone not already familiar with this discussion:  If I wanted to refer to someone in the homosexual community without being offensive to homosexuals. . . I'd defer to what people in the homosexual community prefer.  THEY would be the people to whom I was trying to be sensitive, so their opinion would carry enormous weight.  I certainly would not IGNORE the voices of the homosexual community and use language they found offensive because it was MY preference(if the goal was indeed to be sensitive to that group when referencing them).  If I was speaking to someone who WAS offended by my use of 'autistic daughter' (this has never happened to me) I'm almost positive I wouldn't give a shit that I'd offended them.  


I'm not super happy about this, but even imagining a scenario where I, having given CONSIDERABLE thought to what language I should use to be least offensive to a group of people who share my daughter's diagnosis, had my balls busted about being insensitive pisses me off and I immediately imagine taking the offensive.  And I want to be clear that if YOU find something offensive, then, in the interest of being sensitive I should back down.  But I can't imagine a scenario where that happens unless I knew someone was very sensitive about person first language before engaging in conversation. . . in which case I'd try to avoid giving offense.


Okay. . . so essentially, I refer to Lily as "autistic person" rather than "person with autism" because 1)  It appears to be what people like Lily prefer and 2)  I don't otherwise give a shit.  


Someone is always offended
Rereading some of the above makes it look like I just waffle back and forth whichever way the wind blows, but that's not exactly true, and probably my family will read this and say. . . "Uh huh, like YOU try to avoid offending people. . . riiiiiight."  I didn't mean for it to come across as wishy-washy.  Let me say that I believe whenever you discuss or debate a topic about which people are passionate (abortion/religion/parenting/politics/etc) you CANNOT avoid offending SOMEONE with your opinion.  You just can't.  


I went to school to be an engineer.  When you manage engineering projects, good specifications give you a way to avoid conflict based on a list of diminishing priorities.  In other words, sometimes specifications contradict plans which contradict contract documents (like purchase orders) which contradict terms and conditions.  Good contract documents give you, as an engineer, a way of deciding which is most important.  


Here's an example: "In case of conflict in Order documentation, the following priority, in descending order, shall govern:


a.  Change orders to the order.  Later change orders shall have priority over earlier change orders
b.  The order exclusive of attachments
c.  Other documents, exclusive of Data/specification sheets, Detailed specification, Standards and Drawings, specifically referenced in the Order (such as notes of meetings) as forming part thereof.
d.  Data/Specification Sheets.
e.  Written Detailed Specifications.
f.  Project standards.
etc.


So as an engineer, if I'm looking at a company's standard for tanks and it says one thing, and the data sheet says another, I know I'm to follow the data sheet, because the priority list tells me what governs in a conflict.  


Okay, the link here to giving offense is that I feel like there's always going to be a conflict.  There's no universal language selection that will ever be inoffensive to ALL people.  So it's up to me to determine what my priorities are, in descending order of importance to resolve the conflict.  


My engineer's list, "In case of conflict in use of sensitive language related to autism, the following priority, in descending order, shall govern:"


1)  Lily (insert your own name if you are autistic or the name of your child here if he/she is autistic)
2)  People like Lily
3)  My opinion 
4)  People who love people like Lily
5)  People who know people like Lily
6)  People who have read newspaper articles about people like Lily
7)  People who watched "Rainman"


Lily doesn't currently HAVE an opinion on the subject, but if she did, I would want most of all to be supportive of HER wishes.  Barring that, I've deferred to the voices of those who share Lily's diagnosis.  You might notice that I value my opinion above yours if you're the parent of a child like Lily or love a child like Lily, but that's because I'm convinced I'm smarter than you.  At some point in the list of diminishing priorities, my "give a shit" diminishes proportionally.  It's probably somewhere around "5".  After about four, I refuse to waffle, I'm going to have to just let you be offended.


That's okay with me, because I know that I cannot realistically avoid offending SOMEone.  My goal in being sensitive to this issue is not to avoid offending anyone, but to avoid offending someone who matters; someone who I give a shit about.  I know too, that despite saying "people like Lily say autistic person not person with autism", some DON'T.  And so I'll probably offend them at some point too.  And that's ALSO okay.  It's okay because if I am making this much of an effort to avoid being offensive then my heart is in the right place, and if the person I've given offense to can see that too, then perhaps my offense can be forgiven and rendered UNoffensive.


Against Person First - This could go on for a while. . . 
This section would either be heavily linked (and you wouldn't follow the links.  I know you people, you're super lazy) or heavily quoted.  I will try to link to the post or document in question so you can read the discussions yourself, or verify the quotes, or whatever.  


First I'm going to list some talking points, and I'll follow it up with my questions or concerns.  Please understand that without actually reading the whole article by each person you're only getting my cut and pasted "soundbites".  You may be missing some of the context of the overall discussion this way, but I can't just quote all the articles entirely, so this will have to do.


From The Thinking Person's Guide to Autism:  "Person-first Language:  Why it Matters (The Significance of Semantics)" by Lydia Brown


1)  "It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am."

2)  "When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease."



3)  "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."


From "Why I Dislike "Person First" Language" by Jim Sinclair, founder of Autism Network International (ANI)



"1) Saying "person with autism" suggests that the autism can be separated from the person. "



"2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.  Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."  We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."  We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job."  We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."  Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person."


"3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person"



From "I Don't Have Autism. I Am Autistic." by Kassiane Sibley at Radical Neurodivergence Speaking


"It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it." -Kassiane Sibley


Against Person-First:  How I Interpreted What I Read
Okay, I read all of the above soup to nuts.  I tried to reason my way through them all and decide whether I agreed or disagreed and why.  I want to restate that their opinions don't HAVE to make sense to me in order for their preferences to be valid.  I think that's something that gets overlooked when these vitriol-filled debates get kicked off. . . it doesn't HAVE to make sense to YOU in order for it to be offensive to THEM (and the same applies the other way around). 


On Lydia's points:



1)  Why is it impossible to affirm your worth or value as an autistic person without referencing your autism?  Is my daughter's relative worth less or more because she is autistic?  It is not.  Her worth is equal to mine.  It is equal to yours.  "Affirmation of worth or value" that references a condition/disorder/trait neither enhances nor detracts from her value or worth as a human being.  And if I take it for granted that it is in fact impossible, why does referencing your autism utilizing the phrase "with autism" demean or deny who you are?  I don't see the denial.  I don't understand how it is demeaning.  Maybe I just missed the point, which was, affirm your worth as an AUTISTIC person, not just as a person in general.  But I still didn't quite get it.  And I didn't HAVE to.  When I read through and examined Jim Sinclair's views perhaps I better understood it.  Maybe I felt this point was less poignant than the others to me.



2)  I see the tie-in of person with autism to "person with cancer".  That alone is offensive/negative enough.  It's not a disease, it's not something you 'remove' to the betterment of the person in question.  What I struggled with and only partially understand now is the rest:  "When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic."  We do?  Because I don't know why that's implied.  But. . . I struggled to formulate an argument.


To refute the point, I tried to think of all the positive attributes that we list about people when we say "with _____".  I came up with none that really come up as "traits".  I could say, Jim, the guy with the great sense of humor, but it's not really the same.  You don't say, guy with humor, you say funny guy.  You just do.  You could say Jim, the guy with smarts, but really, we don't say that either, we say, Jim, the smart guy.  The only things I could think of were diseases. . . conditions/impediments, the guy with cancer, the guy with palsy, the guy with a limp, the guy who stutters, things that people think of as "problems".



3)  I mostly agree with this.  When you say "______ Person", that label is an affirmation of identity.  It IS a validation of that person.  But it could ALSO be a NEGATIVE affirmation of identity.  While the first two points seem to dwell on the negative side of person first language, what about the negatives of trait first?  Selfish person, argumentative person, difficult person, crazy person, hateful person.  Autistic person could be considered offensive depending upon the intent of the person using it.  That's why this IS such a dicey discussion, because we have to try to put intent of the user in proper context.



On Jim's points:



1)  I've never understood why saying "person with autism" means I can separate the person from the autism. His argument uses the example of clothing.  People say, the guy with the blue shirt, and the shirt can be separated from the person because the following day the same person might be the guy with the yellow shirt. But they also say, the guy with the great sense of humor, or the guy with a gift for languages.  The sense of humor is no less a part of "the guy".  Where I think back to Lydia's article though. . . we don't often USE "with" language that way. So while I agree that there's still a possible negative connotation about "with autism", I don't agree that it implies you can separate the person from the autism.  But I'll return to this in a minute.


2)  I didn't understand this point at first either.  Even after I read his discussion, which talked about how important features/traits that are part of who we are as people are not referenced this way I still didn't really get it.  I think I get it now.  The point that I didn't take from his discussion of Russians, and Catholics and Parents was that I thought it was apples and oranges.  In my head I was formulating this response that said, but that's different, you don't say person with Catholicism or person from Russia because it's awkward, not because it somehow diminishes the state or degree to which the described person is Russian or Catholic.  And maybe I'm still missing HIS point, but if it's that "traits important to the description of a person are generally used before the person in the English language" then I guess I have to agree.  And Autism IS an important trait when describing a person, so why would you meander around the description by adding an unnecessary prepositional phrase?


3)   The argument here returns to the discussion already reviewed that states, in essence, nothing good ever (mostly) get's described "with ____".  And after initially disagreeing with the statement. . . I read through the description and tried once more to find cases where "with _____" was used to describe some awesome trait.  About all I could come up with was to interject "the gift of ____" in front of it.  Anything else was negative.  The guy with the gift of language, the gift of music, the gift of song, essentially anything that didn't describe the trait as a 'gift' was probably negative, or impermanent (see above).  The only way it was positive was to add a positive modifier, the guy with the "great" hair, the girl with the "great" sense of humor.
It's not that users of person first language INTEND negativity. . . it's just the way most English language seems to be set up: with negativity implied by comparison.


On Kassiane's point:


If the only point argued against person-first language was this one, it would be enough.  This argument stands alone.  If you're in a conversation with a stakeholder and you doggedly refuse to acknowledge that stakeholder's preference, you are being offensive.  Whichever language you choose.


At this point in my 'studies' I had convinced myself that based on the way we use language to communicate with each other about negative traits (which is to say, if it's positive, we don't typically add the "with"), on the language we use to communicate positive traits (affirming our identities with concepts that describe who we are as people FIRST), and on the opinions of autistic adults and how they wish to be referenced, I was against person-first language.
In the interest of fairness, however, I proceeded.


Person First Language:

From:  The Hogg Foundation for Mental Health, brochure, "Language Matters in Mental Health"


1)  "To apply people-first language, ask yourself if using words that label someone with a mental health condition matters in the conversation. A person’s mental health is only one aspect of who the person is. If the information doesn’t contribute to the topic in a necessary or meaningful way, why mention it at all?


2)  It’s no longer acceptable to use the terms “handicapped” or “disabled” to refer to people who have a physical disability. It’s also not polite or respectful to use the term “diabetic” to refer to a person with diabetes. The same holds true for people with a mental health condition."



3)  "Personal Preferences Matter Most"


From:  "Put Me First:  The Importance of Person First Language" by Mary Tobin M. Ed.


1)  "Clearly, when we start by focusing our attention on what people cannot do, we never make room for what they might do. By putting the person last, this is what is being done. It is this attitude that frames how our society views people with a variety of medical diagnoses, identifications or disabilities. We assume they will never do for themselves, so how can they ever be a productive member of society? That being said, there are disability communities that would argue that their disabilities define who they are and that is okay. It is, however, one thing to make that determination for yourself and another to have others do it for you. As teachers, families, therapists and administrators, we are where it begins. This is the power we hold in this battle. When talking about our students, it is only appropriate and respectful to use person-first language and to assume competence. This is another way children and young adults get the message. Our words, like the media, set the example for children and young adults."


From:  "People First Language" by Kathie Snow


1)  "When we see the diagnosis as the most important characteristic of a person, we devalue her as an individual.  Do YOU want to be known for your psoriasis, arthritis, diabetes, sexual dysfunction, or any other condition?


Disability diagnoses are, unfortunately, often used to define a person's value and potential, and low expectations and a dismal future are the predicted norm.  Too often, we make decisions about how/where the person will be educated, whether he'll work or not, where/how he'll live, and what services are offered, based on the person's medical diagnosis, instead on the person's unique and individual strengths and needs."


2)  "Like gender, ethnicity, and other traits, a disability is simply one of the many natural characteristics of being human.  Are YOU defined by your gender, ethnicity, religion, age, sexual orientation or other trait?  No!  So how can we define others by a characteristic that is known as a "disability"?


In Favor of Person-First:  How I Interpreted What I Read
How bored are you with this so far?  I mean, be honest.  Cause I'm having a tough time finishing this fucking marathon, and I'm the one who decided to run it.


On Hogg's points:  


1)  This is essentially what I mean when I say, I refer to my daughter as "my daughter" or "Lily" and not my autistic daughter or my daughter with autism.  It's not an argument for or against person first. . . it's just a guideline for determining when you have to make the choice.


2)  There's really no indication of WHY it's no longer acceptable to do this, so much as it's not polite or respectful.  But WHY isn't it polite or respectful?  And why is it any MORE polite or respectful to refer to someone as "with autism" than it is "autistic"?  This isn't clear to me from this discussion.


3)  No disagreement here, but essentially the opposing side says the same thing.  When in doubt, refer to the personal preference of the person about whom you are discussing.


On Mary's point:


I don't love any point that starts from the premise that it is already clear.  If it was already clear there wouldn't be a debate. . . clearly.  In much the same way the opposing views' extrapolation of what I'm including or excluding and how positively or negatively I mean it. . . "We assume they will never do for themselves, so how can they ever be a productive member of society?"  That seems like quite an extrapolation to make based on the differences communicated by the choice to use "autistic" or "with autism".  But I get the concept that people have preconceived notions of what autistic children may or may not be capable of based on their person experiences with them.  She finishes that particular thought that it is appropriate for us to be respectful and polite, and I agree. . . but I don't know that she's drilled home to me why person-first accomplishes this.


On Kathie's points:


1)  This makes intuitive sense to me, and is probably my biggest confusion when deciding what IS polite and respectful.  Some groups don't want to be identified by diagnosis.  Some groups do.  I can defer to the group's "vote", but I want to understand why it's polite and respectful to one group but offensive to another.  It seems "right" to say I value the person more than I value the person's diagnosis.  The PERSON is important to me regardless of diagnosis, or lack thereof.  


2)  I agree to some extent with the message. . . but I also disagree.  The question she answers "no" is sorta "yes".  Am I defined SOLELY by my gender?  No.  Sexual orientation?  No.  Religion?  No.  Etc.  But do the sum of my traits define me, at least in general terms?  Sure they do.  Obviously I'm not going to start referring to Lily as my Autistic, Catholic, Right-Handed, Female child.  But what I'm talking about is when diagnosis BECOMES relevant.  When does the diagnosis become a relevant defining trait to ME??  When I'm in the midst of trying to decide whether to use person-first language, that's when.  Otherwise, I'm just calling her Lily, or my daughter.  So yeah. . . I'm not tossing it out there like conversation piece.  But when it's part of the conversation. . . what difference does it make where I put it?  Before?  After?  It's there.  It can be seen.  Why is 'after' more polite?  It's STILL a defining trait to put it after the person.  


Summary (I know. . . finally!  You're WELCOME):
Am I on the fence?  Kinda.  But not REALLY.  Because at the end of the day I do have to pick ONE or the other and use it when it's appropriate.  And the choice I make, as previously stated is NOT person-first.  


Why?


1)  People like Lily prefer it.


2)  I'm not convinced that "person with ____" conveys more respect and politeness than it does association with disease or something "bad".


3)  The arguments in favor of using person first "because it is polite and respectful" are the same arguments that autistic people are using against it.


Both sides of the argument seem to base a lot of their issues with the opposing view point on the negative image that is associated with expressing yourself the "other" way.  They can't both be right.  Or can they?  The truth may be that because many people view disabilities negatively, it doesn't make any fucking difference WHICH way we refer to people "with" them regardless of how it is intended because assholes will interpret it negatively NO.  MATTER.  WHAT.  If people were respectful and polite this wouldn't even be a debate.  The people using person-first language and those who are not are doing it for the same reason:  to be respectful, to show pride, out of love. 


Despite not being blown away by person-first arguments, I'll still use it to be respectful to those who prefer it when I refer to their loved ones for the same reason that I'll avoid using it with to those who do NOT prefer it when I refer to THEIR loved ones:  to be respectful, to show pride, out of love.


---------------------------------------------------------------


And now. . . the aborted post I never really fully developed:  
I personalized it by changing the "diagnosis" to one that has always impacted my life, but which I in NO WAY mean to compare to autism (I reference hardships that are in no way comparable) on any meaningful level apart from lampooning the debate about how we are to reference autistic people without offense. . . 


I remember the day long ago when I received the unofficial diagnosis.  When it came, was delivered deadpan, without any hint of compassion or sensitivity.  Jim, your daughter, Emma is sarcastic.  It hit me hard.  Did you just call my daughter sarcastic?


Recent studies have shown that there is a much higher occurrence of sarcasm in children with one or more parents on the sarcasm spectrum.


As long as I can remember I've suffered from sarcasm.  My brain was just wired differently than other kids' brains.  This created disciplinary problems for me and often I felt isolated from my typical peers, primarily because talking to me made them feel like stupid assholes, when all I was trying to do was make them laugh.


It's been a long road, but I finally accept who I am and I want to talk to you now about the importance of "person first language" when politely referencing similarly afflicted people.  


We don't want to be called sarcastic people.  It's impolite and disrespectful.  We're more than just sarcastic.  Sarcasm doesn't define us.  We are people first. . . we are a people WITH sarcasm, or suffering from sarcasm.  That's right. . . people first.


Years later, my other daughter, Lily would receive her own diagnosis.  She's autistic, they told me.  I remember thinking to myself, "At least she doesn't suffer from sarcasm."
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TADA!!  That's it.  That's all I wrote.  I thought it all dovetailed nicely together and conveyed (after having read the pages and pages above) what I was trying to get at, at least somewhat humorously.  


Follow the links above if you want to delve into what people with huge brains think about the debate.  Oh!  and another great place to look is here:  Autism and Oughtisms.  She does the discussion so much more credit than I did. . . and in WAY MORE SUCCINCTLY.  But she's an attorney.  She has a way with words, and "I. . . Not have way." (name that movie).



60 comments:

  1. 1. You amuse me
    2. I didn't make it past "How I refer to my (spoiler alert) autistic daughter" because this is too freakin long and I have a really short attention sp
    3. I did skim enough to know that I completely agree with you
    4. In my experience, the only people I've ever encountered who are actually offended by the term "autistic" are NT people. Screw them.

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  2. I don't understand. Can you explain it again?

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  3. I feel like there should be some kind of diploma issued to those of us who read this whole thing....

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    Replies
    1. There will be no diplomas!! Print it out and take into the bathroom with you. For a few weeks...

      Delete
  4. I don't care about person first, blah blah blah except not to be disrespectful to people with autism. I think no matter how you say it, it comes off negative. All the therapies, IEPs, medications and so forth are attempts to "help" autistic people either become more "typical" or to function better/more easily in a "typical" world. So from the get-go if we're not telling these people they are somehow "less," we are at the very least saying they should be more like "us." Such is always the way with anyone who is different from the majority. In that context the argument over semantics becomes pretty ridiculous. Autism IS negative, or we wouldn't be attempting to "fix" all the difficulties that come with it. That is NOT to say that people with autism are less, are not worthy, are not valuable. And of course not everything about autism is negative, either, which I think makes this whole "person first" or "diagnosis first" argument even trickier.

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    1. I have to agree with you here-- I've always wondered why are we trying to 'fix' these kids? How can we change the ways things are structured in classrooms to help them achieve the goals THEY want to reach (which may not always be associated with functioning in a 'typical' world)? I think it's possible to understand what even a non-communicative child desires a lot of the time.

      Of course, this would actually involve a larger discussion on education, on what is important for all of our children to learn, and the best ways to approach fostering each child's natural talents... Instead of having a difficult conversation, however, many people result to calling child-focused education a whole bunch of crap, and continue to rely upon standardized testing and an archaic educational system that was based off French schools in the early 1800s...

      If Jim gets to write a million word post, I get at least two paragraphs of soapbox, right?

      Delete
    2. you still get a diploma

      Delete
    3. You're allowed two paragraphs and only two paragraphs. The idea that everyone must conform to what the majority needs is a big problem to which there's no easy answer. Well. . . there's an easy answer. . . each kid gets a child-specific education tailored for their needs. Then there are no "special" needs because everyone's education is unique. But obviously that's not practical.

      Delete
    4. also. . . it was only 5,280 words.

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    5. I'll take a diploma.
      And your post was longer than most term papers I graded this semester, which qualifies it for the designation "a million words".

      More importantly, we say it's not practical, yet Montessoris, Waldorfs, IGEs (individualized guided education) and Dewey lab-like schools do it every freaking day. Parents need to stop doubting themselves and thinking only teachers and professionals know what their child needs to learn. Teaching to the test doe snot develop the critical thinking and problem solving skills we need students to have once they get to college.

      Dang, that's another paragraph... I'm over my limit!

      Delete
    6. To be fair to you, my response to your response was pretty long. Maybe it's harder with austim, because nobody (in the case of my daughter, for example) seems to know the best way to get her to learn. And you have to at least start from SOMEwhere.

      Delete
    7. You do-- and I personally think that in this situation, you start with the kid. I know there aren't a lot of people who agree with me.

      However, I only replied so I could fix my phone's autocorrect-- ^ does not. My phone has a thing for doe snot.

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    8. i didn't notice doe snot. But now that you've pointed it out. . . HAHA, you're stupid, you said "doe snot!" *points*

      Delete
  5. If you ever, ever tell me my blog posts are too long again and they're taking up TOO MUCH OF YOUR TIME MY PRECIOUS, I'll link you back to this.

    Hey, Jim. This rocked. You're awesome. And yeah, you totally suffer from sarcasm (I also labor under that horrid affliction, ah, what a curse) but you also suffer from intelligence. Have I said this week (or even today) how glad I am I know you? Consider it said.

    This made me think and it made me laugh and the Lily photo made me squee because DAMN but that kiddo's adorable.

    Get some sleep, Tolstoy. Nice work.

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    1. I write one long blog post out of 80+ and now I'm held accountable only for this? I don't think so!

      Thanks, Amy.

      Delete
  6. I loved this (ok, honestly, I loved what I read...I kept skimming through, and sometimes I'd fall asleep only to awaken when the drool puddle got too big...)

    In all seriousness, though, I have looked at both sides of the debate, and I'm with you..I lean towards the non-person first way of referencing my son's diagnosis.

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  7. Replies
    1. She looks so mischievous there, doesn't she?

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  8. I made it to the end! Do I get a medal?

    I really admire both your tenacity for taking this on in such detail and your desire not to offend anyone.

    My opinion is that the whole 'person first' argument misses the point. It's not the words that matter, it's the context. If I introduce my son and say "This is Joe, he's a kid with autism" then that's never putting the person first no matter which syntax I use, because in that context the autism isn't relevant. If I'm talking to the school about how best to support his needs, then the autism is the relevant part of him at that point so it doesn't matter which way I say it, I'm still putting him as a person first.

    So I think the whole argument is a distraction. As we move further away from the idea of autism as something you have, the language will follow suit. I don't agree that the autistic 'community' prefers one over the other, for the simple reason that a large part of that community has no voice. The views represented by the vocal online presence can't reflect the way that every autistic person feels, in the same way that I can't speak for all the women in the world. They certainly don't speak for me or my kids.

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    1. Great comment and points, and something that reading only the articles and not the comments to the articles kept me from noticing. I remember in hindsight that one of the big arguments from the caregiver side of the debate was the idea that the self-advocates didn't speak for THEIR kid, who was non-verbal and had different issues than they were dealing with. . .

      I don't know if it's a distraction. I mean, every detail that doesn't help resolve the problem is a distraction, I suppose, but ASAN is a group with an agenda: Getting a fair shake as a group in an NT Majority world. Part of that agenda has to included "How do we want to be represented in the world?" "What language do we use as a group to describe ourselves?" It's certainly less important than the end goal of fair treatment, equal opportunity, and acceptance, but it's all groundwork. . . right?

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    2. So true, although I wasn't just referring to non-verbal kids but the idea that, however shocking it may seem, there are actually people out there who don't live on the internet! I know! Weird. And I doubt anyone's ever gone round and asked all of them what they'd like to be called... so even if everyone in the online autistic community agreed, they still wouldn't be representing everyone with autism... see what I did there, I used both person first and diagnosis first in the same sentence {cue thunder and lightening}

      Delete
  9. I will do whatever you say, as long as you never write a post this freaking long again. You lost me at all that engineering crap. I tried to rally...not sure I did. I think I should probably get angry about some stuff, or not, but at this point I am too damn exhausted to "give a shit".

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    1. I feel fairly confident I never will. Engineering crap? CRAP????

      How's the knee?

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    2. The knee sucks, and I am counting on your hilarity to keep me going...so no more wicked boring posts. Yeah. Thanks. ;)

      Delete
    3. Since Kai is an engineer, I feel I can call it crap. That's how it works, right?

      Delete
    4. No, you're right, it totally is crap. But I wanted to play the wounded angle.

      Delete
  10. We already talked regarding your post so I won't bore you with repeating myself so I'll say this....

    I like it when you refer me to your "whack-job blogger/writer friend" and not your friend "who's a whack-job". As you did so kindly in your SI post.
    :)

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  11. Could not get through war and peace either...might be all that mumbo jumbo with the naming system in Russia.

    ReplyDelete
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    1. yeah, they're painful for someone who is unfamiliar with them. I DID read Anna Karenina though.

      Delete
    2. so did i. but not with my eyes. i had an audiobook.

      i also listened to atlas shrugged. that allowed lots of nap time during her rants.

      my eyes started to swim after a while, but i did laugh OUT LOUD at "7) People who watched "Rainman""

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    3. I love me some audiobooks. Maybe I'll read this into my iphone recorder and "publish" it so people can listen on their commutes.

      Delete
  12. AI hope you got a good grade on this writing project! It was very interesting (and I did read MOST of it). It makes me wonde how many people I offend on a daily basis for just any random reasons...I mean I don't want to really know, just wonder.

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    1. honestly, what set me off was this: I'd participated in Skinny Scoop's top 10 Autism blogs and made their top 10 list. The organizer then sent something to all the winners about posting something about autistic kids. One of the other winners replied and said she'd participate, but it needed to be changed to something about "kids with autism" because autism didn't define her child.

      I did sort of a mental face palm and eye roll and deleted it, but I started getting indignant the more I thought about it. It wasn't even that I didn't respect her right to choose the sort of language she wanted to be used in reference to her child. . . it was that she was mandating that language for ALL. And my mental "FUCK YOU" meter went off the charts. . . so I've been thinking seriously about it for a few weeks.

      Delete
  13. I rotate through "kid with autism" and "autistic kid" to be sure that i half-offend everyone.

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    1. better to half offend everyone than to completely offend anyone. Or wait. . . is it?

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  14. I must say that I prefer I'm autistic to I have autism but that could be because I'm autistic is shorter and I'm used to being an 'ic as I've been asthmatic as long as I can remember.

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  15. Right on. If I had to choose, I would use "autistic" for many of the same reasons as you. However, I tend to use whichever phrasing sounds better in my sentence, because, like you, I kinda don't give a shit. (Although 10,000 words later, I'm starting to doubt that you don't give a shit.)

    I get lectured about using autistic all the time by people who prefer person-first language, but oddly enough, I have never had an autistic person complain about it. Funny that.

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    1. I was telling Andrea above (and I'll c&p it here) that the whole thing started as the result of someone MANDATING that a website change a feature post that they were asking people to contribute to.

      "I'd participated in Skinny Scoop's top 10 Autism blogs and made their top 10 list. The organizer then sent something to all the winners about posting something about autistic kids. One of the other winners replied and said she'd participate, but it needed to be changed to something about "kids with autism" because autism didn't define her child.

      I did sort of a mental face palm and eye roll and deleted it, but I started getting indignant the more I thought about it. It wasn't even that I didn't respect her right to choose the sort of language she wanted to be used in reference to her child. . . it was that she was mandating that language for ALL. And my mental "FUCK YOU" meter went off the charts. . . so I've been thinking seriously about it for a few weeks."

      Because this post needed more words on it.

      Delete
  16. OK I started to read this and got partway through. But then my lunch hour ran out.

    Seriously, good stuff here, saving this one for my commute home.

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    1. I hope it's a long commute. . .

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  17. Read it all; ALL. There are so many other diagnoses that are referred to "diagnosis first". I believe asthmatic was referenced above. Also, epileptic and bulimic come to mind. I wonder - is this "person first" push just within the autism community or other diagnosis communities as well? Autism is part of who my son is. He's "my autistic son" like he's my "light-haired son" and like he's my "small-framed son", and my "prankster son". I think sometimes people just try to make trouble where there does not need to be any trouble.

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    1. It's "disability" and "mental health" community driven. A couple of the links above come from institutional type settings where they're trying to foster "respectful and polite" language for their consumers. Why "consumers"? Because client or patient is ALSO considered disrespectful according to those websites. I appreciate the thought behind what they're trying to do, i'm just not certain I completely buy into it.

      Bottom line, if a 'consumer' tells me that they find my language offensive. . . I'll apologize and adopt more supportive language. Similarly if a parent/caregiver tells me the same (in reference to his/her charge), i'll do the same.

      Delete
  18. I agree, and I wonder why we have to treat autistic people like they're so fragile and easily offended. That side of this argument bothers me.

    It all comes down to whether you believe autism is something you have or something you are. If it's something you have then making comparisons to the way other diagnoses are described (like asthma) is appropriate and makes you wonder why autism should be any different. And if it's something you are, then it'd be appropriate to use the adjective (autistic) to describe that way of being. Either way it still comes back to 'autistic' in my Spock-like way of thinking.

    And there's no way I'd ever use 'kid with autism' because come on, that just sounds like it's an imaginary friend... "Mom, don't forget to set a place at the table for Autism!"

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    1. I don't think it's frailty so much as trying to put out the right message. if you listen to the self-advocates, the same language that the other side finds offensive is EMBRACED because they're trying to say, "Hey. . . we're not offended or ashamed of who we are, we're PROUD of who we are." It's like the opposite of frailty. If you look at the person firsters, they're saying, "hey, don't treat my kid like he's some fucking diagnosis on a clipboard. . . he's my SON!"

      I DO, however, LOVE the idea of "kid with autism" where autism is his imaginary friend. . . I may draw that and put it alongside my other "foggy language cartoons" on my other blog.

      Delete
    2. I completely understand the motives of each side, I just meant why do we have to be so 'thing' about which side someone chooses, you know? Why are we so scared of it being offensive? There's a particular touchiness that comes with talking about autism that you don't find anywhere else, and it's that part that bothers me. I don't want people to feel so damn worried that they're going to upset me that they don't feel like they can even say the word autism around me.

      Delete
    3. It's the mental health diagnosis, I think

      Delete
  19. Okay, it took FOREVER to read this, what with the constant interruptions from...stuff. Mostly I agree with you. I think. You were very thorough!

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    1. It would have taken forever WITHOUT interruptions. At 11:00 last night my wife noticed I'd posted and she opened it up. She was sleepy and I sort of patted her arm and said. . . "ohh. . . no, honey. . . this isn't late night sleepy reading, just scroll through and see how long it is." She scrolled on her phone for a while and then said, "how long IS this?" Because she hadn't reached the end, followed by, "I can't even get to the comments!"

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  20. I did a lot of skimming, I admit it. But your previously aborted post could have stood alone, and I totally would have "got" it. Perhaps that's because I am also a person with sarcasm.

    This was a well thought-out and researched piece. I'm assuming this is your master's thesis, and you will be graded on it, right?

    Also, thanks for throwing in all those high falutin' engineering terms, because now I feel stupid. I mean, I feel like a person with stupidity.

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    1. that's because of my sarcasm. Sorry, I'm getting therapy for that.

      Delete
  21. 1. Awesome post. I did make it all the way through, and I'm going to share your blog far and wide. This whole dialogue is useful, I think, to any discussion of how to speak about identity.

    2. However, in all honesty, I found that I was really only thinking of one thing the whole way through: wait, you really finishedGravity's Rainbow?

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    1. I did. I really really did. It was harrrrrd work though.

      Delete
  22. I don't want to be popular just because I have a Psoriasis. I really love the post. Thanks for sharing it.

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