image description: a tall, bright tree at a family graveyard on the Antietam Battlefield. The photograph has been put through post-processing to frame the tree in light while darkening the borders of the picture. Photograph copyright 2016, Sparrow Rose Jones
A reader named Karin posted a lengthy comment on my blog post from two days ago and I felt that all the time and effort that went into it deserved a full blog response. You can read Karin’s full comment under the blog essay What Is a Disorder?
Those of you who have read my latest book, The ABCs of Autism Acceptance, will recognize that I’ve covered this ground already, in my chapter “I is for Identity-First Language,”
Thank you, Karin, for your thoughtful and courteous comment. I also have anxiety, C-PTSD, and depression. These acquired neurodivergences are not, in my case, traits I was born with but neurological responses to abuse and ableism, both of which I’ve been handed heaping helpings of throughout my life. I am sorry to hear that you struggle with these very challenging neurodivergences as well.
I would tend to agree that using or preferring person-first language doesn’t necessarily mean a person views the trait being described as a bad trait, but most often it does and I see indications from your words that you do feel that person-first language is necessary to try to linguistically separate a person from an undesirable trait. Specifically, your response to the choice so many of us have made to refer to ourselves as Autistic shows that you feel autism is a highly undesirable trait that should be held as far away from a person as possible. I will explain further shortly; I am addressing your points in the same order that you made them.
You write, “I want others to see me as a whole person. My disability is PART of me, yes, and it affects many choices I make…but I also have personality traits and interests that have nothing to do with my disability.”
This is where Autism (and many other neurodivergences) are not like many other disabilities.
As an Autistic, I am a whole person. “Autistic” is a label of identification that contains full personhood within it, much as many other labels of identification. If I called someone a “woman” or a “Muslim” or “Black,” would you feel that it was important for them to use person-first language because someone might mistakenly forget that they are a whole person? Instead, perhaps, I should call them a “person with femaleness” or “a person who follows Islam” or …. I’m having a hard time with this last one, because every person-first construction I can think of feels so wrong. “A person with Blackness” is about the best I can come up with. My apologies.
These constructions feel awkward and wrong and sometimes even a bit insulting because….well, because they are. I am trying to separate out someone’s gender, religion, or racial identity from their personhood. I am suggesting that these core traits of personal identity somehow obscure the fact that women, Muslims, and Blacks are whole people. Ridiculous, right?
But people seem to feel so differently about Autistics. Is it because we’re disabled? I don’t think so. Do people question whether a wheelchair user is a whole person? I’m sure some ignorant people do, but most people don’t — as evidenced by the linguistic construction: a wheelchair user, not a person with a wheelchair (although I have seen “a person who uses a wheelchair” but not exclusively.) The same goes for someone who’s Blind or Deaf. We don’t tend to talk about a person with blindness or a person with deafness.
It is because Autism is a developmental disability and sometimes an intellectual disability. This is where I see people insisting most fiercely that person-first language is important to remind others that they are talking about a whole person. We have a cultural prejudice against those of us with neurological disabilities. Because the brain is the seat of pretty much everything — our senses, our movement, our thoughts, our memories, our drives, our communication — people take an extremely ableist view that a brain that is not like theirs might be the seat of someone who is not fully human.
That’s so important, I want to say it again in its own paragraph: people get so insistent about using person-first language to “remind” the world that Autistic people are whole people because they don’t fully believe it themselves.
Why would anyone need to be reminded of our personhood? Because people don’t really believe we have personhood. No one needs to insist that you remember that women are people. It’s self-evident that women are people, right? (Okay, maybe not always. But among reasonable people, yes, it’s self-evident.) Person-first language is a perfect example of Gertrude’s exclamation in Hamlet: “The lady doth protest too much, methinks.”
Another thing that’s different about autism, compared to many other disabilities: you talk about having personality traits and interests that have nothing to do with your disability. My disability is that I have a type of brain that is in the minority and I live in a society that looks down on those of us who are in a neurominority. So everything I do and love and think and feel gets pathologized as a “symptom” of a “disorder” because it all comes from my beautiful but misunderstood brain.
You see, I actually am my brain and I am autism and all my personality traits and interests come from my Autistic brain and that’s why I refer to myself as Autistic rather than trying to create some kind of artificial separation between myself and …. Myself. It makes no sense to try to separate myself from autism because I am my brain and my brain is Autistic. And my brain is beautiful and wonderful and not something I want to try to disown by using person-first language to try to create some kind of pretense that my self is not my self due to shame about my self or a false belief that being my self makes me less than a whole person.
Rather than using unnatural language to try to convince others that I am a whole person (and I don’t know how I could convince someone I am a whole person by using the language of shame and lack of personhood) I prefer to do the work I’m doing right this minute: the work of explaining to people that their belief that Autistics are not whole people is illogical and bigoted and needs to stop. We should not have to hold ourselves out away from ourselves as if our identity were soiled underwear in order to be recognized as the whole people we are. It is an oppression to insist that we will only be viewed as whole people by disowning our own brains.
So it is a very different thing for someone with a “physical disability” (I think that’s a false dichotomy, but that’s another essay for another day) to use person-first language, because a diabetic *can* be considered separately from their diabetes or a person with Ehrler-Danlos Syndrome (a connective tissue disorder I have) is a person completely independently of what their tendons and ligaments are doing. But my disability is one of cognition, perception, communication — it’s my brain that is different from the mainstream and my brain is me and using person-first language to try to distance me from my brain is actually denying my personhood rather than affirming it.
Karin writes, “I do have a question about the language I see many autistic people including yourself often using – “Autistics.” I understand calling yourselves A/autistic people, but not autistics. To me as a reader it sounds dehumanizing and distancing. Can you explain this so I can understand? I just cannot imagine ever calling myself a disabled, a cerebral palsied or other people with my condition cerebral palsies. I understand the concept of identity first in general, but why remove the person part?”
If it sounds dehumanizing and distancing, it is because you have internalized the ableism I was just speaking of — the idea that being Autistic is being lesser in some way, particularly in the area of being human. It is intriguing to me that you call identity-first language “distancing” when it is person-first language that strives to distance me from my own brain.
If you feel that calling myself Autistic has “removed the person part” you are admitting that you feel Autistics are not whole humans and require additional linguistic humanity to be added. By referring to myself by my neurotype, I am saying, “I am this type of human” just like a person referring to themselves by their gender says “I am this type of human.” No one suggests that identifying as “man” or “woman” has removed the person part because no one feels it needs to be added in the first place. Believing that Autistics need to have person added to our identity reveals an underlying belief that it isn’t already there, rolled into the definition the way it is for men, women, and all gender identities.
Karin writes (in reference to depression, anxiety, PTSD, etc.): “We need treatments. Cures. Adequate healthcare coverage for intensive therapy when needed, better medications that don’t have bad side effects or cost a fortune. I don’t think it is wrong to pursue treatments or cures for conditions while also saying “I am a valuable person as I am and deserve respect and opportunities, not stigma.””
I am not against taking medication for depression or anxiety or PTSD I am not against therapies. What I am against is people being defined as “mentally ill” against their will and forced to take medications. I can’t take medication for depression because the medication makes me very sick. I have required hospitalization for the effects of anti-depressants. I don’t think it’s wrong to pursue treatments for depression so long as it is up to the person to choose whether to take mind-altering drugs or not.
But I am very much against seeking a cure for autism. My brain has 100 billion neurons and there is no way to re-wire them and make me not-autistic. There is no way to cure autism in a living person. Autism is a type of brain and you cannot change my brain.
The only way to “cure” autism is to prevent it from happening and that’s exactly what is happening with genome projects like MSSNG. The aim is to determine autistic genetics so that pre-natal testing can determine which babies are developing autistic brains so that their mothers can be counseled to abort them. This is not science fiction. This is exactly what has happened with Down Syndrome. Pre-natal testing for Down Syndrome results in pressure to abort when the test comes up positive. Attempts to “cure” autism are thinly-veiled attempts to create a world where people like me are no longer born in the first place.
Think for a moment how that makes us Autistics feel, watching everyone hustle to funnel millions and millions of dollars into building a world without people like us while the vast majority of us are so under served that we die from preventable diseases and live in abusive situations, sub-standard housing, homeless, or in prison because no one had any better idea of where to warehouse us.
A “cure” for autism is not like a cure for Ehrlers-Danlos Syndrome. I would think it was grand if some gene therapy could cure my connective tissue disorder. I live with a lot of pain every day. My connective tissue is not “me.” I don’t think with it. I don’t dream with it. It is strictly for maintaining this physical body and moving it around, much like you describe when you write: “The majority of problems cerebral palsy causes for me can be alleviated by better wheelchair accessibility, improved home care services, and the ending of assumptions and bias against people with physical conditions.” That is how I feel about my EDS. It is not at all how I feel about being Autistic. My EDS is painful and impacts my mobility, but Autistic is who I am, to the very core.
Karin writes, “To be clear, I’m not championing research to cure autism, and especially not if it would involve abortion or any coercive treatment. I think we would lose something as a society/world without autistic people in it. But I also can understand that there are some autistic people who would want certain treatments, like perhaps something to make sensory stimuli less overwhelming.” and “I think it’s important that we don’t assume that just because we don’t want something, that doesn’t mean others won’t want it either.”
I have devices to make sensory stimuli less overwhelming. I am not against treatments.
But I am strongly against millions and millions of dollars being poured into a “cure”.
Helping me to navigate the world with less pain and more understanding is called accommodation and I am a strong supporter of accommodation. I support everything that makes life easier for Autistics. The problem is that “cure” and “treatment” are synonymous with things that make life harder for Autistics or erase us from the world completely.
I will never support “cure” because that can only be accomplished through genocide.
I am cautious in my support of “treatment” because that word is used to describe so many tortures and torments that cause the depression, anxiety, and PTSD so many of us Autistic people live with.
It is our existence and core identity that are under attack and so long as this war against Autistics continues, I will boldly and proudly continue to identify as Autistic. I refuse to linguistically set my being off to one side so that I can present a socially-acceptable ghost of who I am to a society that will never fully accept my personhood so long as I am working to hide my whole, natural humanity, no matter how many times I toss the word “person” at them.
I choose to live with integrity and authenticity, claiming my beautiful brain as my own. I am Autistic and I am proud of who I am.
I’m autistic, and I also have cerebral palsy. And diabetes. I’ve tried all sorts of verbal gymnastics with some of these words. Am I an autistic diabetic? A diabetic with autism? An autistic with diabetes? A person with autism and diabetes? The permutations go on and on. I’m probably a diabetic autistic, and the two do intersect rather than just co-exist. I’ve heard “cerebral palsied” on occasion and it doesn’t scan. But “disabled” does.
I agree with everything you say about autism and identity.
I also find that cerebral palsy is integral to my identity. Mine is on the mild side. But it is definitely completely part of me. I can only write a few sentences with a pen. That has been a huge factor in my life, because of ableism and having to fight for my right to type things. But also because, I am not someone who can write, just as I am not someone who can fly. There is no me whose legs or hands work typically, just like there is no me who processes sensory input typically. There is no non-cerebral-palsied me. No, that still doesn’t scan.
There was definitely a me before diabetes, 30 years of me. And I would be pretty happy to be me without diabetes again. I remember that me. Having said that, it has definitely affected who I am over the past 10 years, possibly as much or more at times than autism or cerebral palsy has. I have no problem calling myself diabetic, even though there was a non-diabetic me, once, in a way there has never been and never will be a non-autistic me. I say I have diabetes sometimes, too, depending on context and grammar.
More and more I’m thinking towards the social model of disability idea that we are disabled by society, making our experiences across disabilities and conditions more alike than different. Also the idea that I should not have to separate myself from any part of my identity.
Very interesting insights, thank you.
When you struggled to find a person-first way of describing race, you came up with “person with Blackness” but indicated that it feels “so wrong.”
A term that has gained a lot of prominence in some social justice circles is POC (or Person Of Color), and it seems to be used as somewhat of a blanket description for anyone not identifying as white. I’m sure there are nuances here that I’m glossing over.
What I find interesting about this is how you instinctively felt the same construction with slight substitution was just wrong, and there does seem to be pockets of unease in these circles against this terminology. However, when I’ve read opinion pieces about why the author isn’t sure they are comfortable with the POC label, they’ve never quite been able to pinpoint where their unease came from. Most explanations I’ve encountered have framed the issue around the POC label being too one-size-fits-all, and not allowing for unique circumstances.
But I think your logic for why you dislike person-first labels for yourself could be exactly the situation for some of those uncomfortable with the POC label. Because no matter what word you used instead of “color” in this construction, you get the same issue of broadness, just on a smaller scale.
And it makes me wonder if some of the unease actually stems from the feeling that “person of color” doesn’t convey that they are a whole person.
Another thing that occurs to me is that person-first language seems to place a greater emphasis on belonging to a homogeneous group. For example, “person with autism” gives to me the impression that autism is one Thing that all “people with autism” experience in a similar way. And that’s obviously not true. But I could also see the construction as emphasizing one’s belonging to a community.
The constructs of language are always fascinating!
Except that there’s a big difference between “person WITH blackness” and “person OF color.” I have never had a problem with “Person Of Color” but it also isn’t constructed in a way designed to set color aside as something different from the person.
Also, something important to remember: using “Person of Color” as a simple euphemism for “Black” is erasing all non-Black People of Color. Egyptian, Native American, Canadian First Nations people, Mongolian, Chinese, Indian, Pakistani, etc.
Wow, I feel honored that my comment inspired this wonderful post! Sorry it has taken me a few days to respond. I also read another blog post that helped me get a bit more perspective. You’ve probably seen this already, but I’ll link it for the benefit of others may be reading. https://autismandoughtisms.wordpress.com/2011/07/25/has-autism-versus-is-autistic-a-muddled-debate/
That article makes the valid point that people on both sides of the language debate are in many ways trying to accomplish the same thing. Identity first writers are saying “My disability is an intrinsic part of who I am, so I put it first to show people that I reject the idea of it being inherently bad.” On the other side, person first language users say they are also combating societal stigma, by saying “My disability is just one element of my identity, and I should not be reduced to only that trait by people who view disability as something negative.” Nobody wants to be reduced to one trait, even if it’s a good or neutral one.
That’s the one thing I wanted to correct/strongly disagree with what you wrote. People who prefer person first language don’t necessarily see disability at something bad. They may not see it as bad at all, but they are aware that society does, so person first language is their response to society. You may not agree with the approach, but please don’t assume that someone is self-hating if they prefer person first language.
Ultimately I support everyone’s right to use their preferred language to refer to themselves, and believe others should respect it as well. If I know an individual’s preference, I do my best to remember and use it. Like I said originally, I switch back and forth when referring to myself, based on what flows better. I use person first to refer to the disability community overall, because that’s the journalistic standard and generally least likely to cause offense.
I don’t think it’s right to try to change what someone else uses to describe themselves — except when it comes to words that are truly harmful and can’t be reclaimed, like “retarded” or “wheelchair bound.” We all have the right to define the role disability plays in our lives. You and I are both disability bloggers, so it seems our disability plays a big role in our identities, even if we use different terminology. But we have to remember that we are not everyone.
I know some people with physical disabilities who aren’t deeply involved with disability issues. They have a job and life that has nothing to do with disability and they consider their disability to be a very small part of their identity. Many of these people use person first language, or don’t really care and don’t understand the point of such debates. I am guessing that there are autistic people / people with autism who feel the same.
I also want to point out that people with other quite integral conditions often prefer person-first language, and that’s valid too. For example, Down syndrome means every single cell in a person’s body has an extra chromosome. It affects their appearance, health, and thought processes. Yet self-advocates with Down syndrome overwhelmingly prefer person first language. They understand that able-bodied society stereotypes their abilities and traits and it hurts their ability to be employed, achieve social acceptance, etc. Person first language stems from the desire to be seen as an individual and not lumped in a category.
I see your point about autism affecting essentially every part of a person’s thoughts and perceptions, and that makes it more integral than something like cerebral palsy. But actually CP can and does affect the brain in certain ways beyond muscle movement. For example, all babies are born with a startle reflex, but it typically goes away within the first year of life. Not for us folks with CP. Sudden loud sounds make us jump out of our skin. Unfortunately I didn’t know this growing up, so I thought my terror of popping balloons, fireworks, etc. was some kind of extreme anxiety, instead of a response to sensory stimuli based on how my brain is wired. I bet you can relate. As I got older, I got somewhat used to it, but I’m still not a fan of fireworks. Interestingly, now that I know about the startle reflex, I’m better at compensating because I understand the cause. I recover faster and I don’t seem to form phobias as easily as I used to.
I realized that my dislike of saying “autistics” extends to other situations where similar wording is used. I saw a news headline the other day “UK government to apologize to gays” and it set off the same ick factor for me. Same with things like “blacks” instead of the black community or black people. I feel like eliminating the word people/person when referring to any oppressed group has a dehumanizing effect.
One final question/thought — a slight tangent but this has come up a lot at work. I’ve read quite a bit about functioning labels and how they don’t adequately explain the complexities of autism. I’ve read articles by people who have been labeled high functioning and they feel it causes them harm because people don’t understand how much difficulty they may have in some areas, or how much effort they are spending on “passing.” But what about when a person chooses to label themselves high functioning? Do you think that’s OK? Obviously if they are writing on their own blog, that’s their choice. But if they are being interviewed or writing for a mainstream media publication, should that label be included or is it irresponsible journalism because it could harm the autistic community?
I wonder if it’s more a matter of visible vs invisible disabilities? I could see if everyone who sees you notices that you’re a disabled person, you’d want to remind them that you are other things too. Whereas autism is an invisible disability, so people see me as NT and I have to repeatedly remind people that I am not NT.
You make a good point, except the things I wrote about are things I see happening at every level of support needs, including Autistic people whose disability is most definitely *not* invisible as well as Autistics whose disability is is invisible to those who aren’t *very* knowledgeable about autism.
The poet Amy Sequenzia is an Autistic whose disability is very much not invisible — everyone who meets Amy sees very clearly that she is disabled. This is what she has written about person-first language:
“You will try to say that a disability does not define me. How do you know it doesn’t? I define myself and my disability does define me. You are being ableist by telling me how I should feel about being Disabled.”
https://ollibean.com/person-first-language-and-ableism/
I’d like to preface this by saying I have absolutely no disagreements about the concept of calling yourself autistic, or an autistic. What I do think may need a little reworking is your argument.
You mention that the removal of the word ‘person’ is only a problem for people because they’ve internalized that autistics are less than people and that makes me a little uncomfortable, because I’ve seen examples of times when people DO remove the word ‘person’ to dehumanize people. I don’t say, “I am a gay[adj] person,” I say, “I am gay[adj],” but I don’t usually call myself “a gay[n]” unless I’m joking around. Whereas someone making an argument against gay people is WAY more likely to call us “the gays,” usually to say we’re the ones causing hurricanes or something. And you see this with black people too. “The blacks,” or, say, “the jews.” I think that’s the core of what bothers me. I’ve been trying to explain to people for a while why the term “jew” bothers some jewish people, and people compare it to being called “a christian” and don’t understand that it comes with a rich history or being used to dehumanize us. When they question whether or not we’re human (and they do question it, I’m specifically referencing a header that CBS, I believe, ran) they say, “Are jews people?” not “Are jewish people people?” for good reason. Nazi propaganda liked to talk about “The Jew.”
I get what you’re saying about first-person language. Being autistic influences every aspect of my life, and it shaped who I am today in ways I’m still figuring out. But please be careful that you are not forgetting or undermining other marginalized groups struggles when you’re making this argument.
You’ve moved the topic off to someplace new.
I’m gay and I say I’m gay. I’m trans. I’m Autistic. I’m nomadic. I’m white.
Talking about the gays, the trans, the autists, the nomads, the whites …. that’s no longer identity issues. Those aren’t phrases people use about themselves. It’s a different issue from identity politics. You’re on a different topic from my essay.