Person First vs Identity Labels: Which Do You Use?

HELLO_I-amIn an autism awareness conversation, the question is asked, should we say a “person with autism,” or an “autistic person,“ or an “autist?” How about an “Aspie” versus a “person with Asperger’s?”

My take: whatever that person wants. Not everyone agrees with me on this. Yes, it can get confusing, and it’s hard to keep track of individual preferences. A large number of people believe we should adopt the one, best way and stick to that. But what is that, and who gets to decide?

A pattern emerges on whether or not “person first” language is preferred (a person with ___). If the person sees the label as part of his or her identity or sense of self, then wearing the label is more likely the choice; if the label is seen as an unfortunate condition or burden, then it is more secondary to the person.

Sometimes it doesn’t matter. For example, you could say that I am a person with synesthesia, or that I am a synesthete. Since the implications of synesthesia are typically considered benign, most synesthetes are fine with either phrasing.

Other times, it does matter. A person with gastro-intestinal disorder, meanwhile, would likely find it absurd to be given an identity label for this (and what would that be? A gastrite?). On the flip-side, a person who identifies as an Aspie might find it undermining to be called a person “with Asperger’s”, or even more so “with autism” if being an Aspie is part of his or her core identity. It can feel similar to saying one has an ethnicity versus is an ethnicity. For example, I will say that I am Celtic, but that I have other ethnic heritages that are part of me genetically but less of my identity.

This pattern isn’t perfect. People have varying opinions about whether a condition or set of traits is a “disorder” and even those would who label it as such might still see the condition as part of who they are and own that identity. It can also serve as a way of seeking camaraderie and support from others who share the label. An example of this would be the term Lupites for people with Lupus, which has caused some amusing confusion among roleplaying gamers. I don’t know of a single person with Lupus who would choose to keep the condition, but it can definitely define a person in profound ways, and a tribe of others sharing that label helps.

So what can you do to make sure you phrase things to never insult anybody? First, I’m pretty sure this is impossible. We can, however, do our best while also being patient with each other in the process. I tend to use the pattern described above, which relies on my biased perspectives. I then adjust when I realize the predominate preferences of a group, and then adjust again for individuals regarding their own personal identity.

It’s not a perfect solution! What are your thoughts on this? Do you have any strategies to suggest? What about examples from your own experiences?


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