Could You Please Stop Insisting that People Have to Use Person First Language

There are so many of those lists explaining how to speak to disabled people respectfully. They are generally well intentioned and some of them are even really good. There is however an almost universal element that I wish would be retired. They inevitably include a statement that disabled people should ALWAYS be referred to using Person First Language (see an example here).

I have issues with the command to always use Person First Language for two reasons.

1. Person First Language is culturally geographic. It is only consider PC in North America. Interestingly if you were to read the same article in English speaking Europe they would insist that you say “disabled person”.
2. Despite it being widely considered PC in North America, a growing number of disabled people (myself included, see here and here) are intentionally abandoning it.

This isn’t about completely switching the script. I’m not suggesting that we ban Person First Language or that people shouldn’t use it (so don’t attack me in the comments). I’m saying that realistically person first language is not always appropriate (from a purely cultural sensitivity angle) and demanding that it be used anyway is a tad clueless.

The insistence  that people MUST use People First Language is also just disrespectful, not only to how many people are coming to self-identify but also completely ignoring that the reasons that we do so might actually be valid. Ignoring the voices and preferences of actual disabled people just reinforces the idea that we are incapable of determining what is best for us.

Whenever I come across the Person First edict on a “How to Be Respectful about”. Disability” list. I always wish it had been replaced with something along the lines of,

How to Deal with Disability Labels

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

I repeat. It is extremely rude and disrespectful to impose labels on people who have clearly expressed an alternate preference.

I wish this concept wasn’t so hard to understand.

 

 

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What Learning Other Languages has Taught Me About How I Learned to Talk About Disability

I am an anglophone, so I first learned to speak English and it is the language I use almost exclusively day to day. I however spent my first six years of elementary school in French immersion which despite having been nearly twenty years ago at this point has left me functionally fluent in French. By which I mean I can get by in entirely French environments. My vocabulary is extensive enough, though my grammar skills are lacking but good enough to make myself understood 90% of the time on the first try. I can also read the language. though don’t ask me to write anything down as my written literacy in French is terrible.

I also have some very basic skills in German after having taken it for a couple semesters in high school and taken it up again for four or five semesters in university.

In reflecting on my non English language training I came to a realization. I was never really taught how to narrate my experience as a disabled person in any language.

In school none of the activities we talked about as we learned to read or write (in English or French) ever related to disability. They were always geared entirely toward able-bodiedness. The proverbial Dick and Jane or Spot the Dog (and their French equivalents) all ran and played and tossed and caught balls. In these lessons the other children were learning not only the rudiments of grammar and literacy but how to describe their own lives.

I was never taught to articulate how or why I couldn’t do the things my peers did, like why I couldn’t cross the monkey bars. I knew even as a Kindergartener that I had Cerebral Palsy but no one ever taught me how to talk about how it affected my life. So I knew I couldn’t cross the monkey bars but I couldn’t articulate why. Words like disabled and disability were not in my vocabulary, much less an understanding of how cerebral palsy affected my body.

Most children start grade school with the vocabulary to list off the parts of the body (Head and shoulders,knees and toes etc.). Learning the French equivalents was much the same. When we did biology lessons on the body, everything was framed through a lens of able-bodiedness. When we studied the brain, we only ever learned about it through a neuro-typical lens. No wonder, no one ever considered that I might be Autistic as a child, no one around me even had the words to describe difference. A medical definition of normalcy was completely ingrained in the places I found myself.

We didn’t learn words like disabled, wheelchair or crutches. Disability was erased from existence by simply never being mentioned.

I had those words in English eventually but I didn’t learn them in school. They were not words that appeared on spelling vocabulary lists. I never had to look up their definitions in a dictionary.

I learned about the words that describe my life in an entirely medical environment in a completely hodge-podge manner, through overhearing snippets doctors told my parents. These exchanges were never directed at me. I just happened to be in the room when they took place. Terms like brain damage, hemiplegia (a word spellcheck doesn’t even think exists, apparently I’m supposed to have meant paraplegia). Terms like walker and crutches were learned from observing the other people who came to the local rehabilitation hospital. The only one I think I got out and about in society was wheelchair and even then it’s use was framed more in terms of something elderly people needed, rather than connected to disability.

I was never taught the French equivalents of these words. I think the only one I learned organically was the term for wheelchair. I think it was in a book we read for school. Other than that my limited disability related French vocabulary comes from me actively looking them up as an adult. Even so I think I can only explain cerebral palsy in French at a very simplified first grade level. I’ve never had to seek medical treatment in the French speaking places that I have lived so I just never got taught the words in the only place they seem to be imparted to people.

That is not to say that I never encountered disability related language in grade school. It all just happened to be of the slur variety. I was definitely called a retard on many occasions. Oddly, my French immersion peers would always follow up this insult with the bizarre claim that it meant “really smart” in French as if they could convince me I hadn’t just been insulted. It is bizarre because the word retard comes from the completely innocuous French word for late or slow. As a result I was pretty familiar with it.

The point of French immersion is to have the student completely fluent by the time they finish grade 12. Even though I didn’t get that far and transferred to an English school in grade 5, I doubt that I just left before the disability vocabulary list was assigned as spelling tests are abandoned for more in depth grammar and writing training around that time anyway. I also never learned about disability and language in any of the English classes I took after that and I doubt French schools were teaching more than their English counterparts.

Oddly in terms of studying German, the instructor made a conscious choice to not teach us disability vocabulary.

Sure my semesters in high school were the same simplistic head and shoulders, knees and toes vocabulary, you get in Kindergarten but by the time I started taking university level courses, we started having more complex terms and learning to understand them in practical context.

I remember in one of my later intermediate courses, there was a word list in the textbook that specifically dealt with disability. It had words like disability, wheelchair and crutches. The professor for the course told us to skip it. I remember being disappointed but not being brave enough to ask her why. I did go through the section on my own time and the only issue I found was that the reading comprehension section, where they put the vocabulary in context did veer into inspiration porn territory. It was a story about a 19th century woman who used a wheelchair and ran a successful toy factory. The last line of the piece was something along the lines of “It just goes to show that a person in a wheelchair can be a success!” *sigh*.

While, yes I could learn these words and how to use them on my own time, I sincerely doubt that any of my nondisabled peers felt compelled to do so. So even when non-medical centred opportunities present themselves, they really only hold appeal to people personally affected. Learning about disability still isn’t seen as necessary, it is extra.

It is in reflecting, particularly on that experience in German class which really drove home how building my disability vocabulary was entirely medicalized when it really didn’t have to be.

I do wonder if things are different now at least for children (that German textbook incident wasn’t really that long ago). I didn’t have access to the internet as a kid. Discussions and debates around terminology like person first vs. identity first didn’t exist back then. There was no call to #SayTheWord.

I am worried that these important language discussions don’t really trickle down to children, whose worlds are still very much framed by the adults around them. Adults who are themselves often non-disabled. Just consider how strong the unflinching support for person-first language can be among certain parent bloggers.

So I wonder are we still denying children the language to speak about and understand their own lives? And if so how can we work to change it?