A few years ago, I participated in a course called “Partners in Policymaking” where I learned very valuable things about how laws protecting disabled people were enacted and how new policy is created. One thing I didn’t like, though, was the insistence on using “People First Language” (PFL) because it “emphasizes the person first, not their disability.” This is advocated by all government agencies, including the CDC, and by some universities that offer courses related to autism.
While more and more people are seeing the bias implied in PFL and are advocating for the use of “Identity First Language” (IFL), it seems like this is an ongoing conversation. PFL vs. IFL has been discussed in many spheres and blogs. One good article is by Emily Ladau, who happens to be a Partners in Policymaking pal. Here are my two cents.
The original idea was good. It meant to stop the use of what became derogative terms to refer to disabled people. However, it is intermingled with medical connotations. The comparisons given in general are those to diseases (don’t call them deaf, that’s like calling someone a diabetic).
In fact some organizations, like Family to Family Network, states that “A disability has been defined as a body function that operates differently. It’s that simple! It’s just a body function that works differently.” Wait, what? What about neurodivergent people? What would be the body function that works differently in someone with anxiety? Autism? ADHD? It is the person as a whole that experiences the world in a particular way and responds also in a given way. We’re not speaking about their pinky.
Another issue I have with this is that people advocating for PFL speak about IFL as if one didn’t address the person by their name. One webpage stated that PFL is “defining a person by name (Jane) or role (Aunt, Sister, Friend) and not disability helps others see potential rather than limitations.” As if one called out: “Hey, you, the autistic one, come here!” Does that sound ridiculous? It is. You commonly call or refer to someone by their name or say they’re your friend/child/parent.
Note also the bias in the quote above: “see potential rather than limitations.” They are saying that by thinking someone is autistic they think of limitations. Not of the positive traits that autism brings, including loyalty and honesty. They think “attention deficit” for ADHD, instead of creativity.
It is true that some communities DO want to use PFL. Some people DO see their particular disability as something that doesn’t change their life in a crucial way. Having a chronic pain condition, which is a disability, can be considered as something separate from the core identity of the person.
Some other diagnoses are hard to use with IFL, even if you wanted to. For example with ADD/ADHD, Cerebral Palsy… how would you use it?
But many, especially in the neurodivergent communities, DO embrace their disability as an identity. Many also consider being neurodivergent is not a disability in and of itself; it is something that becomes a disability in a society that is built for neurotypical people. They like their type of brain. And want to talk about it as just another aspect of their personality. Some even see it as an advantage and as a positive trait.
The bottom line is that PFL stops being respectful when it doesn’t consider the wishes of the people it wants to show respect to.
What would really be respectful?
- It is crucial to value the person and show it—do not think you’re better than they are or that you’re fortunate because you don’t “have” whatever. This is hard to do, because we’ve been socialized through ableism. I dare say that we all, including disabled people, have interiorized ableism, subconsciously believing that being “able-bodied” or “neurotypical” is a desired, optimal condition.
- Realize that the person has a myriad qualities and can offer great insights and value to the workplace, classroom, or group.
- Stop using terms such as “afflicted,” “suffering from,” “confined to,” “victim.”
- Accept and use the preferred language of the person (not the caregiver, though) that you are talking to, or referring to. If they say they want to be referred to as autistic, don’t correct them. You’ll end up digging yourself into a hole explaining to them why saying “I have autism” is better than “I’m autistic.” Explanations like “You’re a person first!” and “Autism doesn’t define you” don’t make the cut. They do know they’re a person. And… maybe they DO feel autism defines them. Just like being a woman does. Or a man. Or an architect, mother, mathematician.
A good list of tips on communicating with and thinking about disabled people (or people with disabilities, depending on their particular wishes) includes that if you offer assistance to the person, WAIT until the person accepts your offer. And that you speak directly to the person, not to their interpreter or companion. It does mention PFL later on, but in general it offers good ideas.
I use and advocate for the use of IFL. To me it represents valuing the person as a whole, meaning WITH their disability or neuro-type. To me, PFL is the equivalent of “not seeing color.” If we all go with the flow and use PFL to avoid stereotypes, we actually perpetuate them. We collaborate to the thinking that a particular disability is a negative trait and the less spoken about, the better. We all can change the culture, but only if we dare to do so.