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.

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

  1. Good article. I find the wrangling over “person with a disability” vs. “disabled person” a bit pointless too. We have so much hate speech to contend with, and I’d rather spend the time combating that. I find those two terms to be equivalent in terms of nuance and use them interchangeably. With some disabilities or medical conditions, the name of the condition will lead to one or the other working better. When talking about my main disabling condition, for instance, your main choices are “people with ME/CFS” or “ME/CFS sufferer”. (Perhaps “ME/CFS patient”, but that’s rarely seen, and medicalises us still further.) It’s obvious which is preferable there.

    So I think a lot of this boils down to whether there is an adjective available for the medical condition in question. Most of the time, there isn’t, which means person first language is likely to work better. The lack of adjectives for most conditions/disabilities means that we only have this discussion about the few that do have adjectives, and that’s problematic because they are often the ones which may not be seen as disabilities at all, particularly Deafness and autism spectrum disorders. The politics are different. In those cases, and indeed in all cases, I go with whatever that particular community seems to prefer for terminology. “Wheelchair user” is much better than “person in a wheelchair”, for instance, but the latter is better than “wheelchair bound” or “confined to a wheelchair”. I don’t think that particular phrase is primarily about where the disability word is put.

    I also find the medical model vs. social model debate often gets oversimplified. I am disabled in ways which mostly can’t be changed by making the world more accessible. What I primarily need is proper amounts of research (ME is scandalously neglected) into treatments and a cure. ME is a really common condition, and there are many others in this situation. I have a variety of accessibility needs as well, but to suggest that I can participate fully in society as long as society makes itself more accessible is nonsense. I’m bedbound 23 hours a day, despite having a variety of tech and equipment that makes life better in various ways (I’m typing this on a tablet with a wireless keyboard, for instance, and my flat has a walk-in shower/bath that means I can use less energy showering). The terminology debate seems to come down to medical model vs. social model a lot of the time, which is why I brought that up.

    My experiences of UK terminology are not the same as yours, by the way. I’ve lived here all my life and been disabled for 19 years. Very few people here are defining disability primarily as a social experience. Some of the disabled community are, but not all, not necessarily even half, and practically no one outside the disabled community is doing so. Social services and so forth use terminology which gets weirder and weirder, and which is closer to the “differently abled” school of thought. I’ve frequently been scolded by my home care agency for not keeping up with their regular changes of terminology and using terms such as “carer” when they’ve decided it should be “support worker”. The more an organisation talks about empowering us, the more they silence us and tell us what we can and can’t say. “Person-centred” is always a red flag for that. As for the general public and the media, it varies but a lot of the time they’re saying “the disabled” and similar.

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