Note/Edit, July 2017: When I originally wrote this blog post in November 2011, I identified with some experiences and labels that I no longer identify with. I've edited those descriptors to replace them with ones that feel more affirming of my current experiences moving through the world, and ask that if you have quoted from this page, you also add some note to update or change it.
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 East Asian, in regards to race, and Chinese (Han, specifically), if you go by ethnicity. I am U.S. American if you go by nationality. I am a person of ambiguous faith and Christian upbringing by religion, and radical leftist of some otherwise undefined fashion, if you go by politics. I am genderqueer and non-binary. 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 East Asian or U.S. American or a person of faith, and it is not an inherently bad thing to be Chinese or leftist or genderqueer. There may be aspects or consequences of my identity as an East Asian or U.S. American or person of faith (especially of Christian background) that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese person or person of ambiguous faith or genderqueer person 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 East Asian, or that I am Chinese, or that I am U.S. American, or that I am a person of faith, or that I am a leftist, or that I am genderqueer, 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 religiosity or spirituality, or that I have leftistness, or that I have genderqueerness? 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 East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer.
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 people of faith choose to engage more actively with faith-based cultures and communities (either of a specific faith, or that are spirituality-based in general), and others would prefer to avoid faith-focused events or communities. Some East Asians choose to engage more actively with East Asian cultures and communities, 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.
***
You can read the first argument at “The Significance of Semantics: Person-First Language: Why It Matters,” which was published in August 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 East Asian, in regards to race, and Chinese (Han, specifically), if you go by ethnicity. I am U.S. American if you go by nationality. I am a person of ambiguous faith and Christian upbringing by religion, and radical leftist of some otherwise undefined fashion, if you go by politics. I am genderqueer and non-binary. 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 East Asian or U.S. American or a person of faith, and it is not an inherently bad thing to be Chinese or leftist or genderqueer. There may be aspects or consequences of my identity as an East Asian or U.S. American or person of faith (especially of Christian background) that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese person or person of ambiguous faith or genderqueer person 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 East Asian, or that I am Chinese, or that I am U.S. American, or that I am a person of faith, or that I am a leftist, or that I am genderqueer, 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 religiosity or spirituality, or that I have leftistness, or that I have genderqueerness? 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 East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer.
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 people of faith choose to engage more actively with faith-based cultures and communities (either of a specific faith, or that are spirituality-based in general), and others would prefer to avoid faith-focused events or communities. Some East Asians choose to engage more actively with East Asian cultures and communities, 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.
Indeed person first language actually demeans the person in this way. It attempts to dissociate them from some characteristic and in so doing defines that characteristic as bad, by virtue of it being necessary to dissociate from, however by flagging it up as a bad thing to dissociate from it fails in that endeavour and merely re-inforces the association, but in a negative way.
ReplyDeleteAmen. I have been saying this for years....and 35 years ago I started out working as live in staff with people who were being deinstitutionalized. And wondered why we seemed more alike than different....
DeleteExpressing things with extra words is usually a sign of concern or pity and not respect in my experience. Anyone have English counter examples to that notion?
ReplyDeleteIf people are giving you pity, they're NOT giving you respect.
DeleteWith you 100%, Lydia. Well said.
ReplyDeleteLove this. Thankyou. I am one of those parents of children on the autism spectrum who never identify them with an "autism" label, except when I write about the challenges faced and how they were overcome or not overcome. It is merely a part of what makes them who they are..only part of the equation not the entire formula. In fact I have come under severe hostile criticism for that. I say that my children are entitled to respect not becasue they are autistic, Caucasian, male, American, Jewish, with brown hair who like history and politics but they are entitled to respect because they are "human."
ReplyDelete"This is my son Isaac, he's autistic"
ReplyDelete"This is my autistic son, Isaac"
"This is Isaac, he has Autism"
"This is Isaac"..... wait for him to run away avoiding social pleasantries.... "He is autistic" or "He has autism"...
In order of priority; "this is Isaac, my son who is autistic"
Does it come down to is vs. has?
Your blowing my mind... how do I want my boys to see themselves... ? I don't feel good using the word autistic as the main identifier of a person....
hhhhmmmmmm I'll be thinking..... People often say where does his behaviour end and the autism begin, "It's all Isaac" is my response...
P.S I would never introduce my child with a reference to Autism...
ReplyDeleteand discourse is awesome
Personally, I prefer saying that we (my son and I) have autism.
ReplyDeleteNot that I don't totally understand that "we are autistic" and that's part of our identity. It's not something we have like a disease, or received in the mail, or that we own like a sofa.
However, I was diagnosed with Diabetes (Type 1 aka Juvenile Diabetes) and I cringed when people referred to me as "a diabetic" because so many people, especially in the years following my diagnosis at 17, totally forgot that there was a human being behind that diagnosis and I have always felt that "I have diabetes" at least sets the tone that I am not a disease that has historically lead to higher likelihood of kidney damage & dialysis, blindness, amputation, early death, and all of that good stuff. I have found that saying "I have" seems to trigger the recognition, in the person I am speaking to, that I am a human being and they should treat me as such, and that I do live with diabetes every day and that does make my experience as a human being much different, but we can still compare notes on that and other human experiences.
When I was first diagnosed, the myths surrounding diabetes were often put in front of my feedback regarding blood sugars and particularly hypoglycemia. "Diabetic" came with the idea that I couldn't eat anything with refined sugar in it and that if I said my sugar was "low" and I need juice than I must be full of crap because the doc prescribed the regimen and clearly I couldn't be a human being experiencing a side effect of that regimen...
So I have an aversion to "diabetic" and "autistic" but, as with many things, I think it is a very personal decision. Autism is a huge part of my identity and I would not be me without autism. I do find that the word "autistic" puts a quick end to any conversation with someone who might not know much about Autism or might only be aware of the myths (the whole "husk/shell" of a person thing, for example) that are outdated and false. I find that, when communicating with someone new, when providing any identifying details, it is important to present a common trait (even something as general as being a person, or using "I have" to personalize the information, or being a parent/mom, etc...) to cue a shift in conversation from perhaps perfunctory information (names) to more intimate conversation...
Obviously, the preference is personal, but I figured I'd throw my two cents in as someone who isn't using the person first language because of any delusions that autism might be separated from "me" or from my child by some miracle or new fangled protocol or that it is some part of us that we can just zip and unzip or that we aren't 100% proud of ourselves (warts and all!)... I just worry, when communicating with other people who do proclaim that they will wince if they hear that someone "has autism", and who do prefer the term "autistic", that too many assumptions are based on the specific vocabulary choice and that might act as a filter (positive or negative, but altering perception either way) on further communications/relationships.
I hope this makes sense... I also hope that nobody reads my comment as suggesting that autism is a disease like diabetes, as I only offered diabetes/diabetic as an example of where person-first language has made a difference in my life, and why I tend to sway toward person-first language in discussing personal autism.
If you really think that you are being called not human because you are called diabetic then I think you need to calm down a bit, because I can only imagine the most lucid people calling diabetics non-human.
DeleteIf you don't want to seperate autism from yourself, then you are autistic. Aby other complaint against it... well to be honest you're arguing poor semantics.
I've never been fond of People First language but know so many who get offended if I don't use it. So I feel I never know what to say. Nice argument though, much appreciated!
ReplyDeleteAh, cool. I'm so glad to read this. Whether it's Chicana or Latina or Hispanic, Deaf or Hard-of-Hearing or Hearing-Impaired, Dyke or Lesbian or Queer, Quadriplegic or Gimp or Wheelchair user, the words we use to describe ourselves through our lives also describe our attitude toward those aspects of our lives. Precisely because we are alive, we change and grow and move into varied environments, encountering various opportunities and obstacles in our associations with others. We change our minds about "what" we are. And it's a big deal to come out and tell people. And later, a big deal to refine it, change it, maybe fight for something different. We change until we die, and then, I guess, someone else will say who we were.
ReplyDeleteI like your last sentence so true. What we will leave behind as far how people will remember us. We identify our selves. than other will always have others words to describe us.
DeleteI need to use crutches as a result of an operation gone wrong, and I call myself a cripple. That isn't because I feel overly negative about being a crutches user, though, it's just my way of accepting my current physical reality.
DeleteLove this post.
ReplyDeleteIt's the same reason I call myself Blind and not a person with blindness. Or say that I have blindness.
It's the same reason I call myself Queer, and not a person with queerness. Or say that I have queerness.
Also, this page is super-mega-accessible for me, BTW. And for those who don't already think Autistic Hoya is full of awesome, she gave me a braille business card when I went to her presentation! And it was actually brailled correctly, which so seldom happens! Epic all around.
-Blind Queer Autistic
Really wonderful article and a subject that has been on my mind quite a bit. As the parent of two children - both whom are autistic, I find myself using person first when I don't feel like it's necessarily the best choice of wording simply because I don't want to upset the autism community. But this autism community's voice seems to be made up mostly of parents and educators who have wanted to be sensitive, supportive and pc. Those who who are autistic themselves seem to prefer "autistic" and I believe that it's time to put those individuals in the front seat of this debate. My daughter is nonverbal but now communicates through typing and she, too, prefers autistic. Great article!!
ReplyDeleteWhat I am about to say is not a valuation of you as a person or your identity as an autistic: I very much endorse your right to explore what gives life meaning and to push back against other people's conceptions or preconceptions about you or what makes life meaningful. I just want to say that I honestly don't buy that the phrase "person with autism" (or "person with Autism" or "Person with Autism") necessarily devalues you or reflects a devaluation of you compared to the word "autistic" (or "Autistic").
ReplyDeleteI get the sense from your writing that you find "person with autism" insulting because to you it inevitably suggests something wrong with being autistic, but I think that both "person with autism" and "autistic" can mean that autism is bad (or that autism is good/equal/just different) depending on the speaker/writer's beliefs and understanding of autism. There is no linguistic or semantic rule that can preclude either meaning. Using different intonation, capitalization, italicization, or context we can convey either meaning with greater clarity. Maybe the best thing is to allow both to exist in free variation with the recognition that neither is a free pass or a guarantee.
Consider an analogy with the uses of the word blond. We can say "X is a person with blond hair", "X is blond", or "X is a blond", but none of those will necessarily convey whether blondness is a disease or another way of being. Nor will any of them will convey whether blondness is a characteristic or an identity (and every blond is free to choose to embrace blondness as either).
It's pretty obvious that blondness is just another way of being, but that is in large part because we live in a society that widely recognizes/believes that. It doesn't matter what precise terminology one uses to discuss blonds because most people can rest assured that no one thinks anything bad about people with blond hair. On the other hand, when it comes to terminology about groups that do not have the same assurance of social recognition and value (gay/queer/etc.; black/African-American/Negro/person of color/etc.; retarded/mentally challenged/special/special needs) we cycle through terms and argue about which ones are "correct" or "best". I really believe that the problem is not in the words but in the greater context--the attitudes people hold and the degree to which we can trust them to value/understand those groups or treat them fairly.
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ReplyDelete
ReplyDeleteWhen you are writing the word "identity," do you instead mean "membership in a group or category"? I'm trying, and failing, to understand your use of the word "identity."
I understand identity to mean, the defining characteristics of an individual person's life. Primarily, we have three major ways of forming our identities as individuals. What we are (i.e. disabled, Asian, American, etc.), what we do (i.e. writer, student, activist, etc.), and what we experience (more broadly defined than by individual terms, though some exist, like survivor). Different people may find different parts of their identity to be more important in defining themselves and understanding themselves.
DeleteI wrote something similar on this subject myself. I don't call myself a person with womanhood or a person with Canadianess. I don't call my friends "people with friendship," nor do I call my sister, "my person with sisterhood." As I believe Ari Ne'eman said, when I go on a trip I don't forget to pack my autism.
ReplyDeleteWhile I agree with your post, I use both in my writing because people-first language is a hard-fought battle of disability rights advocates and the disability rights movement that was sought for people with disabilities as a group.
ReplyDeleteIt is among their many attempts to create a disability culture that goes beyond a particular disability. The fact that the autistic culture is at odds with the disability culture DRM activists are trying to create has long been a phenomenon that has intrigued me. I still don't really know what it means, but I suspect there is significant and weighty meaning there.
The thing that really gets me about this linguistic pretzel is that many of those people who feel the need to use people-first language as a sign of respect show their inherent disrespect in ways that are far louder and far clearer then the linguistic knots they tie themselves up with. The same tends to be true for "politically-correct" language as a whole. It seems to me that if you have to work so hard to "show" respect, then you're not actually respecting others in thought, word, and deed.
Nevertheless, I still use both. In many respects, the semantics are besides the point. I don't want to argue about autistic or autist versus person with autism or person with a diagnosis of autism. I want people to look past these words and see the content of my writing and the character of the people I write about.
You make a good point and I do respect it. I just long for the day when it doesn't matter, when I don't have to go back and edit in more of this version and edit out some of that version. I long for the day when we can stop twisting ourselves into pretzels and just talk about being autistic and being able, being autistic and being capable, being autistic and being awesome, without having to justify and explain and redress.
So, I am a non-autistic parent and sibling, and I tell people This is my daughter. To some people, usually close friends and family members, I tell them she has been diagnosed with autism.
ReplyDeleteYou have every right to determine what parts of you you adopt as identifiers. I was born and raised in New York but don't consider myself a New Yorker. I have a bright, spunky, delightful child who responds at times and in some ways that forces external to me have identified as "autistic" or "spectrumy." To me, the diagnosis is information. Like her hair color, her favorite kind of dress, and her favorite brands of gluten-free bread. How I identify myself and my daughter to others is MY business. These shoulds and shouldn'ts are paralyzing. People avoid saying anything for fear of being shut down, furthering stigmas and unnecessary separatism in our culture.
But I would NEVER correct you for calling yourself an autistic person. In fact, now that I know how passionate you are about your autism label, I would respect that by introducing you as "my autistic friend" should the opportunity ever present itself. That is your life, your choice, and your call. Your journey leads you to this conclusion, and I am no one to say you shouldn't.
But I have equal rights to my choice as you are to yours.
I agree with the 5/27/12 post from Anonymous, and with Ashley Nance. My daughter has autism, and I started advocating on her behalf almost 25 years ago. I chose then to use person-first language and descriptors, because I wanted school officials and medical personnel and everyone else to see her as I did: a bright, sensitive, fun, little girl who has brown hair and likes to draw and the color purple, and whose brain didn't work the same way most people's did. First and foremost, she is who she is - I wanted all decisions about reasonable accommodations, school work, pharmaceutical protocols, etc., to be based on her and her needs, without people jumping to conclusions about what she does or doesn't have. I believe in the saying that if you've met one person with autism, you've met one person with autism. But back when my daughter was young, not many people had heard of autism or knew what it was, and therefore, a lot of fear and stigma surrounded it - much more than now, I think. Insisting that my daughter was her own person, and not not a column of check marks in a diagnostic manual, helped her get the personalized care and accommodation she needed. Now that she is an adult, she is still heavily dependent on me for some daily living skills: I pay her bills, transport her to work and back, shop for her groceries and make sure she has her medications. If she told me she preferred being called autistic over saying she has autism, I would certainly honor her wishes. But insisting that people get to know her as a person first, with autism second, has and continues to serve her well. And, I think, break down some stereotypes of "autistic individuals" because they can get to know her without making any assumptions. I think this is especially important when you realize the Autism Spectrum Disorder really is just that: a spectrum. What is true for one person on the spectrum may not be true for another. I respect the rights of all people to be designated in a manner of their choosing, but person-first language has worked well for us. My daughter had an excellent educational experience in public schools and we have been privileged to work with some really wonderful medical professionals. That might still be true if I had used identity-first language. But it might not, as well. I don't think I insisted on person-first language because I needed to feel better about my daughter. I did - and continue to do -it because I want others to see her as I do.
ReplyDeleteI'm recently diagnosed at 55. I don't experience being autistic as a disorder or disability. My daughter, 18 also autistic, experiences several disorders (fibromialgia, sensory processing disorder, ADHD) that commonly overlap with autism. For her, being autistic carries comorbid conditions. For me, the main one that I'm aware of is rejection sensitivity dysphoria, which I suffer from in discrete instances.
ReplyDeleteIn my work as an editor, being autistic gives me enhanced abilities (superpowers), so I don't associate being autistic with a disorder, quite the opposite, I associate it with a...what's the opposite of a disorder? An order? Because "disorder" does not have an antonym, I coined one (similar to the coining of "allistic"). "Dis" as a prefix does not have an immediate antonym, but I found a useful one, "en" (enable/disable, encourage/discourage, enorder/disorder), and coined "enorder" to indicate the opposite of a disorder. Some autistic people like it, others don't, but I feel it's a useful term.