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CLLynch @lynchauthor
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Confused about person-first language? Is it acceptable or not? Here's a brief history on PFL and how it went from etiquette to ableism: #pfl #ableism #acutallyautistic
In 1983, at the dawn of the AIDS crisis, a brave group of activists stood up at a health conference and made a declaration which would later be known as The Denver Principles. It was a profound treatise on human rights in the medical profession which lives on to this day.
The Denver Principles opens with "We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."
Thus began person first language - through a refusal to be labelled a "victim". It was brave, it was profound, and it was RIGHT. And better yet, doctors took notice. Over the years more and more research papers referred to "people" instead of "victims" or "patients".
Person first language spread outside of the AIDS/HIV realm and began to be used for other types of illnesses. It became a standard part of medical etiquette.
Studies showed that abled people showed more compassion in situations where someone was referred to as "a person with epilepsy" instead of "an epileptic". This seemed to demonstrate that PFL helped changed perceptions around disability.
However, PFL did not sit well with certain groups of people. Since the 70s, the Deaf community had championed the word Deaf with a capital D to describe Deaf culture, which they distinguished from the medical descriptor.
While the Deaf rejected terms like "deaf mute" and "deaf and dumb" the Deaf community did not view their deafness as a disability and took pride in the unique culture that arose among the Deaf.
In 1993 the US Department of Education's Office for Civil Rights published a memorandum promoting person first language and instructing its members to "avoid using phrases such as "the deaf," "the mentally retarded," or "the blind."
Thus, words like Deaf and Blind were paired with a term that was often used as an insult. Memos and statements like these turned medical descriptors of disability into insults.
The National Federation of the Blind responded to that memorandum wholeheartedly rejecting it.
"WHEREAS, just as an intelligent person is willing to be so designated and does not insist upon being called “a person who is intelligent”... so it is with the blind."
"―the only difference being that some people (blind and sighted alike) continue to cling to the outmoded notion that blindness (along with everything associated with it) connotes inferiority and lack of status."
"We believe that it is respectable to be #blind, and although we have no particular pride in the fact of our blindness, neither do we have any shame in it. To the extent that euphemisms are used to convey any other concept or image, we deplore such use."
The National Federation for the Blind had made an important point: it was understandable why people with AIDS did not want to be referred to as victims. But it was less understandable why blind people should not be referred to as blind.
In this kind of over-extension of person-first language, the underlying #ableism of our society became clear: to label someone with ANY kind of medical problem or disability WAS to label them a victim.
In 1997, a sociologist and activist for the blind published a piece called "Person First Language, an Unholy Crusade" which you can read here: blind.net/a-philosophy-o…
Between the Deaf community and the Blind community, it soon became clear that certain groups resisted having their conditions turned into insults/offensive terms.
With the rise of the internet, autistic people began to find each other and communicate with each other, and they too developed a sense of community. And they, like the Deaf and the Blind, rejected person-first language.
So what do these groups have in common? Well, for one thing, each of these groups has their own culture - a culture that rose up through their similarities, instead of their differences.
I highly recommend taking the time to learn about these cultures, as I think it can really open the eyes and ears of people who are accustomed to viewing deafness or autism as some kind of medical misery.
Person-first language is a useful way of separating a person from a condition that they consider unfortunate or negative. No one wants to be labelled by something they dislike about their bodies or situation.
But by that token, when you use it, you are marking their illness or disability as negative - as something people should want to be separated from. And when you do that, you step into dangerous territory.
It's like when someone says "I'm sorry about the autism" to me - this happened just yesterday. It tells me a lot about how they perceive autism and what they think about my situation.
Ironically, by using person-first language, which was developed to avoid labelling people as victims... you can accidentally label that person a victim. Which must be incredibly frustrating to people who simply want to be polite and not insult anyone.
So - what to do? Well, in most cases person-first language is still probably a good bet. But there are clear and obvious exceptions and those are the Deaf, the blind, and the autistic communities.
And if someone with ANY kind of disability or medical problem tells you they would rather be called a diabetic or an epileptic rather than be tiptoed around with awkward phrasing like "person with diabetes" or "person with epilepsy" SAY 'OKAY'. For heaven's sake don't ARGUE.
As soon as you ARGUE with a disabled person about person first language, you put yourself in a position where you're trying to convince them that their condition is bad and they shouldn't want to label themselves with it. Does that seem like a good idea to you?
It should be patently obvious that no one would want to be separated from a positive label. "I'm not a genius - I'm a person with high IQ!" or "I'm not a Nobel Prize Winner, I'm a person who won the Nobel Prize!" are not arguments you're likely to run into.
So when you insist on removing a label from someone, you're telling them that it isn't positive at all - it's negative. And quite frankly, a lot of people have a problem with that, ESPECIALLY the Deaf and autistic communities.
In summary - when you use person-first language you need to consider the type of disability/illness being discussed, and preferably be aware of the culture around that disability. And if that's too complicated for you - you could always ASK.
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