Autistic Personhood or Personhood Alone: My Thoughts on Identity-First Language
"By the way, I tend to use identity-first language when talking about autism, feel free to ask me about this later." I've done multiple presentations on autism, and this sentence was usually in there somewhere. While language surrounding autism wasn't usually the main topic of discussion, I felt it was important to at least mention that there was more than one way to refer to autism and autistic people.
What is identity first language? Identity-first language means stating the "identity" label before stating the "person" label. This could look like saying "Hispanic person," "Jewish person," or "Autistic Person." The alternative, person-first language, would be the opposite, saying "person with anxiety," "person of faith," or "person with autism." Most of my undergraduate classes would cite the importance of person-first language, saying that seeing the patient as a person was the most important thing, but I never even heard of identity-first language until after I realized I was on the autism spectrum.
It wasn't until I studied these things for myself that I realized why they mattered so much and was able to form my own opinions on the matter. In the end for me, it came down to how we value a person, their parts, and what they stand for, all of which are very important.
Person-first language: Person-first language (person with autism) is based on the desire to give value to a person. People who do this use phrases like "see the person, not their disability," and often would prefer to separate a person's disability from the person themself. For some disabilities, this would make sense; I've seen the example of substance abuse disorders being used here. Separating one's alcoholism from them as a person makes sense because of societal tendencies to put all the blame on the person with the disorder. However, person-first language can tend to have a black-and-white view when it comes to disability, which is where identity-first language would vary.
Identity first language: Identity-first language (autistic person) is based on the desire to recognize the full being of a person. People who use this language see their autism or their disability as an intrinsic part of themselves, and an important part of their personhood. Many autism therapies, both past and present, have focused on separating autism from the person, whether by stigmatizing autistic traits, encouraging the concealment of autistic traits, or by using pseudoscience to attempt to remove a person's autism.
From the various sources I've read on the subject, person-first and identity-first language come with a variety of assumptions about personhood and the value of disability.
Person-first language sees people as valuable for their innate existence as a person. And I would agree that recognizing someone's personhood is extremely important, especially given autism's history. In fact, the creator of applied behavioral analysis is known for having said, "You see, you pretty much start from scratch when working with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person."
Given this terrible history, it would make sense, then, to first establish the personhood of an autistic person. However, it's the second half of the phrase "see the person, not their disability" that most identity-first advocates disagree with. By stripping the person of their disability, it can have the effect of failing to see the entirety of the person, disability and all. If you don't see a person's disability, then traits like avoiding eye contact, different body language, and directness, can be seen as character flaws instead of a part of someone's disability and unique outlook on life. To "see the person and not their disability" is to whitewash and cheapen their experiences as a human being.
This stance can also have implications when we think about what person-first language implies about the value of disability itself. When we avoid using the word disability or autism, and treat it like a bad word, it can have the effect of implying these things are bad.
I'll use an example: What if, instead of using the word "Woman," I decided to say, "Person with womanhood." After all, "fight like a girl" is meant to refer to doing something poorly and weakly, so to protect people from the negative implications of doing something "like a girl," we should avoid referring to someone as a woman or a girl because it would decrease other's ability to see them as competent human beings.
In this example, we see that when we have misconceptions about the value of a word, it can negatively reflect on the person that word is meant to describe. Being a woman is not innately worse, and in this scenario, instead of changing the language used, changing the viewpoints and negative perceptions about that word would be much more useful when trying to recognize the value of women.
In the same way, identity-first language says that "autistic" or "disabled" aren't bad words or inherently worse forms of existence. Calling someone autistic isn't mean, it's a statement about a part of their identity (that is, if they are actually autistic). To identity-first advocates, avoiding these words would imply that it is bad to be autistic, or bad to be disabled.
To summarize, person-first language implies that being disabled or being autistic are inherently negative things, and to see a person's disability is to see them as lesser than others. Person-first language believes that disability takes away someone's personhood, and to see that person, the disability must not be seen. Identity first language, however, sees disability as a valuable part of a person's identity and recognizes the effect that this identity has on their experiences as a person. In this narrative, disability adds to one's personhood, rather than taking away from it.
For this reason, labels like "special needs," "differently abled," and "person with autism" are often disliked by the autistic community because of their avoidance when it comes to recognizing the value of identity as an autistic person.
For me, this identity was extremely valuable, especially because I was diagnosed later in life. Having a framework for understanding my struggles helped me better identify them, as well as find helpful coping mechanisms for stress. It also helped me find a community of people with similar experiences. For me, this label of "autistic person" has been inherently positive, and when other people judged me negatively for it, is autism to blame, or is it their negative perceptions about autism? Stripping me of this identity would take away these experiences, and would have the effect of devaluing my worth as an autistic person.
I know where I fall on this subject, and I encourage you to do more research about this subject if you're still undecided. One source I'd suggest in particular is the Autistic Self-Advocacy Network, or ASAN. Many of my thoughts on this subject are based off their resources, which contain very well-explained and complete thoughts on topics related to autism. Below, I'll be linking an article on this subject, and I highly recommend that people read it.
To clarify, these are my own opinions and beliefs about identity-first vs. person-first language. Other autistic people can have their own opinions and beliefs, and it is good to take in the opinions around you and come up with your own. That being said, identity-first language is the general preference of the autistic community, so using this language is often the most respectful way to refer to this group. If you feel uncomfortable doing this, some people use "autistic person" and "person with autism" interchangeably, and while I do have a preference, using both is better than only using "person with autism" and forcing others to use that language as well. I've found that "on the autism spectrum" can be a relatively neutral phrase as well, and it's what I tend to use when talking about autism with people who are less educated about the merits of identity-first language.
Overall, though, the best policy is to respect the preferences of the individual you're interacting with, while recognizing that the general preference of the autistic community is identity-first language. Thanks for listening, and feel free to share helpful comments on this topic.
Links:
Identity-First Language - Autistic Self Advocacy Network (autisticadvocacy.org)
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