Just Because I Use Identity First Language Doesn’t Mean I Let Disability Define Me

I’ve talked about disability and self labeling before, I am no going to rehash my reasons again but there is an aspect of the debate around person first and identity first language that I’d like to take a look at.

Language and how it’s used is complicated and as a result, how language is used often deviates from the original intention. However for context here is a brief description of the original intent of both person first and identity first labeling.

Person First: as in person with a disability (as opposed to disabled person), person with with autism (as opposed to autistic person) was conceived to combat stigma around the term disability. It was meant to show the humanity of the person with a disability diagnosis by highlighting the individual’s personhood first. Disability was just tangential.

Person first language sprung from a medical understanding of disability, where disability was seen as the problem so it had to be de-emphasized.

Identity first: as in disabled person (as opposed to person with a disability) was originally conceived to challenge the medical view of disability and replace it with a socio-cultural view. It wasn’t people’s diagnoses that were the problem, it was society. Society was the main cause of disablement. Saying you were a disabled person was originally not about identity at all it was an acknowledgement that society was the predominant cause of barriers for people with impairments (see my post here for a more in depth breakdown of the social model of disability). It was a way of calling attention to society’s physical and social barriers by tying oppression to the term disablement.

I sincerely doubt that most people who use identity first language are doing so to constantly be saying “hey you are oppressing me” or “hey I’m oppressed” (even though those two statements are likely true). They do it for the same reasons I do. It is a way to reject the idea that disability is a dirty word and to say that disability can be a part of a person’s identity without sacrificing their humanity. It’s a pushback against the stigma associated with disability (for more see this piece by Emily Ladau).

It is from this perspective that I will be dealing with an issue that I often see in the debate between person first language (PFL) and identity first language (IFL).

There are several defenders of PFL who reject the idea of disability as negative but maintain the use of PFL because they feel that using IFL means they are letting disability define them and they are more complex than one identifier.

I honestly find this reasoning a little ridiculous. All people are complex and embody multiple identities that may include race, sexual orientation, gender identity, religion, nationality and more and yes even disability. I would argue that most people who identify with any of these things don’t then reject everything else. I have yet to hear an argument where someone has to argue where their religion is placed in a sentence by themselves or others means that it is completely defining them.

When it comes to being defined by a single identifier, it is not usually the individual being labeled doing the defining. It is someone else. In terms of identities that are marginalized the person doing the defining is probably being bigoted. People are far to complicated to be reduced to a single label.

Ultimately, it shouldn’t matter where disability is put in a sentence before or after person. It should just be a description. I admit I often use disabled person and person with a disability interchangeably when speaking about people generally just to have variety in my writing.

I however, choose to use IFL to directly challenge the bigotry inherent in assuming that I must be separated from my body to be considered human. I most definitely don’t do it to pigeon hole my identity into one label. I am far to complicated for that, just like everyone else.

I continue to believe that people should have the right to self-label and I endeavor to respect people’s personal preferences because we have been labeled by others far to often and it is time for us to take over the conversation about our own lives. I will not however accept the idea that my choice in sentence structure means that I am limiting my identity.

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While Outlander is a Real Winner for Women it Totally Fails Disabled People

Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis

Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis

Outlander is returning to the Starz Network today. It is a popular series based on the novels of Diana Gabaldon. I admit I like the show. I read the books first so of course I cringe where the show deviates from the original.

The show is well made and truly entertaining. It has also been lauded for its complex portrayal of women and female sexuality. These assessments are pretty accurate though I take issue with the casting of the female lead. Jenny Trout describes her like this;

“[Caitriona] Balfe is slender, but her stomach isn’t flat and her breasts are natural. The lack of body hair is a bit disturbing, given the time period, but watching the actors together, the viewer sees two people being intimate with each other, instead of two sculpted dolls switching between acrobatic positions.”

So she not totally perfect but she is very slim, which is the standard for women on TV and in movies. In the books however, Claire is repeatedly and consistently described as curvacious. Something Balfe is decidedly not. It might have been nice for them to have diversified the bodies of their female cast but they only non thin women are either extras or characters over forty-five. So I guess it’s only a partial win for women.

The show does however completely throw disabled people under the bus. The story contains the character of Colum MacKenzie who is both disabled and the Laird. The character is in many ways a major step forward for disabled characters in television.

Colum is not a stereotype. His character is complex, his role in the story is not completely defined by his disability, though it is informed by it. He does not fall neatly into the almost universal boxes of being a saint, villain, victim or inspiration. He has both good and bad qualities and none of his character flaws or virtues are a result of his disability.

And yet despite all of that, I cringe every time he is on screen. It is extremely disappointing that the producers of this show opted to cast an able-bodied actor. Particularly because none of the usual excuses for passing over a disabled actor apply.

The character is never shown as able-bodied. There is no transition to excuse the use of cripface.

The actor Gary Lewis is not the major draw to the series and is in fact almost unrecognizable due to the hairstyles and clothing. So his star power is not required for the show to be a success.

His disability is entirely created through the use of CGI and can therefor the portrayal is not the result of acting skill.

In fact as you see in the image above, which I obtained from an episode review, the author added the word Yo in between the bowed legs to draw added attention to them. The author had this to say about the physical presentation of Colum’s disability.

“the Laird shows up at the door, surprising [Claire] with both his abrupt entrance and CGI legs. Seriously, what in the world? The special effects here are maybe a little extreme, but sure. Let’s roll with it.”

The author is presumably able-bodied as she hasn’t indicated why she would have any expertise to judge the reality of the portrayal. So by have an able-bodied actor in computer generated cripface, the show destroys its own ability to claim a realistic portrayal of disability by giving viewers the ammunition to question it.

If a disabled actor had been used, this argument would not exist. You can’t argue with the reality of a person’s actual body. rather than a picture superimposed in post production.

This is a prime example of why there needs to be actually disabled actors cast as disabled characters. Realisn cannot be achieved through imitation or computer generation. It also shows that regardless of how accurate those CGI legs were (and I’m not competent judge), they allow nondisabled people to dismiss the possibility that for someone, that this might be their real body and real lived experience.

Hey People: Diagnoses are Nouns not Adjectives

As I have written about before, language usage is important when considering how disabled people are viewed and portrayed in society. While I personally prefer to not use person first language, there is one situation where the person should always come first. This is when an actual diagnosis is being discussed. I will demonstrate:

Person with Cerebral Palsy

Person with Down Syndrome

Person with Spina Bifida

and so on.

This should be self evident because both the word person and the diagnosis are nouns, and yet this simple grammatical concept is to complicated for a lot of people. Today, I read this. The headline reads

Kiwi expat family take cerebal palsy son’s discrimination case to UN

What the fuck? Cerebral Palsy is a noun, it is the name of a medical diagnosis. It is not now nor has it ever been an adjective. It can’t even be made into one as Autism can be made into autistic (most autistic people are totally fine with being called autistic but people with other diagnoses that can be made into descriptors like Schizophrenia really hate it and you should all respect that).

This is far from the first time, I have seen this severe lapse in grammar. It often happens to people with Down Syndrom2 for example here and here. Bless Google for knowing this is terrible. while I was searching for the examples, I knew were plentiful, my top results were for articles with correct person first phrases “man with Down Syndrome” or “child with down syndrome”. Even so, it didn’t take much scrolling before I found examples of the offending phrases. To add insult to injury, the second example is a story about a young man with Down’s who was killed by police. Even in death he can’t have his humanity recognized

By trying to turn a noun into an adjective, you are going to both fail and give that noun precedence of place. By putting it before the person you are giving it ownership of that person and denying their humanity and individuality. So in future check your grammar and remember that diagnoses are not descriptions of people but are things that people have.

Proof that “Positive” Euphemisms for Disability Just Don’t Work

In the last couple of decades the language surrounding disability has become very fluid, less specific and just generally vague because “disability” is seen as a dirty word whose associations have negative affects on the people to whom it’s applied. In a move that fools exactly no one supposedly positive euphemisms have been introduced to replace referring to people as disabled. Words like “differently-abled” and “special needs”. These terms are suppose to reduce the stigma associated with disability by framing disabled people with positive language.

Does it work?

Nope!

Comparisons to and associations with disability are still considered offensive to nondisabled people.

Take for example the fact that Anglophone Quebec residents (a minority in the province) warranted an apology when a provincial website referred to English language users as Quebecers with special-needs.  An error that has blamed on poor translation.

In a bilingual country, translation errors occur all the time and are usually corrected without incident. However when that error accidentally associates a large group of people with disability it makes national news.

Considering the real tensions between francophone and anglophone Quebecers this will be seen as a slight to the Anglo minority. If a possible and likely translation error that inaccurately associates a majority nondisabled group with disability causes enough controversy to be covered by the news, the term is not functioning as intended.

Associations with disability even when accidental are still causing offense even with so called “positive” language.

Time to do away with the misleading and lazy language and deal with the real stigma and prejudice.

Why I Don’t Use People First Language: A Brief History of My Relationship with the Language and Disability

I am going to be clear up front, this is NOT a condemnation of person first language or the people that use it. I always endeavor to refer to people respectfully which includes using their preferred labels. This is rather a case of personal opinion and a reflection on how the language of disability is structured and created.

If you live in North America and you have any sort of connection to the disability community, you have probably come into contact with ideas around the politics of language. By this I mean how people want to be referred to if their disability is being referenced. The biggest and most outspoken contingent is for “people first” language (person with a disability, person with autism, etc.). If you look at disability etiquette guides you may even be commanded to use people first language and discouraged from using terms like disabled person.

The latter is my personal preference and oddly enough, were I to be live in the UK, those same language etiquette guides would agree. Interestingly their rationalization is very similar to that of arguments for people first language. The individual is paramount in language framing. An individual should not be defined by their diagnosis. They discourage using terms like “the disabled” or any other language where the person’s humanity is erased.

If the reasons are the same why is the conclusion different?

In North America disability is mostly defined in society through a purely medical perspective. Disability equals a disease that must be stopped and is the source of suffering in the individual. Disability is often permanent and no one wants to have focus on them based around the assumption that they are medical balls of suffering rather than as people. Hence trying to focus on the supremacy of humanity first in rhetoric to distance themselves from the negative connotations of the disabilities they are permanently connected to.

Language in the United Kingdom is based more around defining disability as a social experience where often the most limiting barriers are not people’s diagnoses but rather the fact that society is full of physical and social barriers that limit the disabled person’s ability to participate fully in society. In this way disability is not just a medical diagnosis but an experience of social exclusion. Putting disabled first functions as a description of the experience of social oppression.

That may sound complicated and more than a little convoluted and it is. While in my experience, I am far more limited by socially created physical and social barriers than I am in what I cannot do, I recognize that for others while they share my experience of social exclusion, they do have personal experiences of disability removed from social life that may cause them suffering or hardship.

So there are these two dominant points of view and I find both of them flawed so why go why choose between the two instead of choosing something else like special needs, differently-abled, etc.. Short answer I find both innacurate and condescending (why, is another post entirely).

Long answer, the language around how to describe disability changes often. These changes are usually a reaction to the fact that the existing terminology has become something more than just a medical description and this something more consists of turning medical terms into insults. These insults were and are used to directly insult the people they are supposed to describe.

This is most evident in terms used for people with intellectual disabilities. They used to be classified as idiots, morons, imbeciles and cretins. All those words have actual medical definitions and are not in fact just synonyms for stupid. That is however, how they came to be used. In direct response to this the medical profession decided to find a new word. One that wouldn’t have the negative connotations of insults. The word they chose as a catchall to replace them was retarded.

A word currently so offensive and stigmatizing that there is a movement to have it removed from public usage.

Other disabilities are not immune to to being reduced to insults. Statements like “are you blind?”, “are you deaf?” or”That’s lame” all have connections to descriptions of disability and certainly aren’t meant kindly.

That’s when they stopped using medical terminology and started adopting euphemisms like “special needs” and “differently-abled”

The idea being that the language itself was causing the stigma and if disability either the word itself or a diagnosis was removed it would both remove linguistic stigma and create positive non-medical terminology.

This to was a failure “special needs” is used as an insult, The main premise that it was the language that created a stigma towards the people. In reality it is the people who are stigmatized and any word used to label us will by association be viewed negatively. They could change the dominant preferred label to ” fluffy bunnies” tomorrow and the most likely result would be that sales of pet rabbits would plummet rather than our benefiting from positive associations with cute animals.

This is why disability has returned as a label so long as it’s attached to person as a qualifier. In my opinion word order is irrelevant. Until the stigma attached to actual disabled people is tackled, we can call ourselves whatever we want, the oppression we experience will not save us.

That is not to say that mindful language choices are not important. Negative associations with words that describe disability should absolutely be challenged.

But so far as having a single supreme, universally accepted label is concerned, I don’t think uniformity is necessary. In fact linguistic deviance may help challenge people to think about why they use the language they do and may spark a conversation that goes beyond labels and looks at the people that choose them.

For me choice is key. If I am going to be labeled, I am not going to just accept a term that is almost certainly created by nondisabled people, I am going to define myself.

So to conclude I prefer the term disabled person/people because it is accurate and reflects my personal experience of disability but I accept and encourage other disabled people to choose for themselves.