Language is a powerful tool that we can use to express ideas, views and opinions. It can be as simple or as complex as we make it, depending on the circumstances available to us at the time, such as audience, subject and intention.
It is a tool to build, and a weapon to destroy. (10 points if you can guess this reference!) Words have real power, as anyone who has ever been bullied or harassed or lumped with an incredibly hurtful label can attest!
When it is used to describe our identity, who we are, it becomes our greatest gift to ourselves. We can use language, words, to tell a story about who we are:
our work,
our family,
our journey,
our home,
our interests,
our loves,
our vulnerabilities,
our fears,
our goals,
our values,
our aspirations
Then I get to the part where I'm able to share that I'm neurodiverse or autistic, and I've discovered that there are a couple of ways to do it that are widely used.
I can describe myself as "an autistic person", or I can describe myself as "a person with autism".
This is what's known as "identity-first language" or "person-first language".
There has been lots of discussion and argument around this, not just in the autistic and neurodiverse communities but in the wider disabled and diverse communities also, and whilst it may seem quite trivial to be arguing over semantics, it has big implications and getting it right can mean the world to someone.
The key distinguishing feature in these two perspectives is personhood and disability (I dislike the word to describe this, but it is technically speaking a disability).
Is it something you are and that's at the core of your identity, or is it something you have?
I'll try and explain it below using me as an example.
Identity-first Language
To refer to me as "an autistic person" is to use identity-first language.
Doing this puts the autism first in the phrase and makes it a part of the person's identity. The notion here is that I am who I am, I am good at what I'm good at, and I like who/what I like because I am autistic.
Others ways to look at it could be like if you were to describe yourself using, for example, your socio-economic status ("working-class person" and so on), your ethnicity ("white person" or "black person" and so on) or your age ("young person" or "middle-aged person" and so on).
Certainly among the autistic community, identity-first language is popular because it means the autism is framed as a strong part of who we are. This is true as it is a lifelong neurological developmental disorder. It is considered a disorder because it can, at times, mean even more obstacles to traverse and more effort is needed to function in some aspects of the neurotypical world, be it work or life.
There are times when it can be disabling in a variety of ways, just as there are times when it can be considered a gift. It defines the ways in which a person experiences, understands and responds to life and the world around them.
Identity-first language was founded upon the idea of the social model of disability. What this means is that though we have our limitations due to our impairments, it is the inaccessibility and inflexibility of society that disables us.
An easy example of this is accessibility for wheelchair users - if a wheelchair user is going to a restaurant but that restaurant doesn't have wheelchair access, is the user disabled by the fact that they use a wheelchair, or are they disabled by the inaccessibility of the restaurant?
But if the restaurant has wheelchair access, then the wheelchair user is able to go in, sit at a table, order food and drink, eat and drink, pay for the food and drink, and leave and carry on with their day exactly the same as any other patron.
Person-first Language
To refer to me as "a person with autism" is to use person-first language.
Doing this puts my personhood first and frames my autism as being one aspect of who I am. It also allows for my having other attributes such as:
being tall,
having brown hair,
enjoying football, reading, videogames,
enjoying a wide range of foods,
being kind and patient with others,
can speak Spanish,
enjoys city breaks for holidays
Using this form of language means that my autism is just one of many aspects that defines me.
This has tended to be the more PC way to refer to someone with a disability or condition or other diversity as there are many who think that, like above, that aspect is just one part of who the person is. Rather than defining someone by their disability or condition, this form of language emphasises and respects that people with disabilities are, first and foremost, people.
Other examples can include "person who is deaf" as the affirmative phrase to mean a deaf person, "person with epilepsy" as the affirmative phrase to mean an epileptic person, and "person who is in recovery from a substance abuse disorder" as the affirmative phrase to mean a recovering addict.
These terms of reference are often used in disabled communities, and they reflect bigger things about what disability is, how it affects or interacts with your personhood, and how other people see you.
But is it that simple to simply say what language you should be using?
Yes and no, as there is a lot to say around personal preference which I'll touch on later. After reading into this and considering it for myself, I've noticed that each one has its advantages and disadvantages.
With identity-first language, by framing the autism as a part of the person's identity, it means not only making the autism a strong part of who they are, but there is a sense of ownership and pride that goes with this form of language too. Because the world isn't geared towards autistic people, or even disabled people in a wider sense, being able to frame it as a strong part of your identity shows that pride in that you are succeeding as your unique self in a world that won't always get you.
Identity-first language is so popular within the autistic community because of the feeling that it is a strong part of who they are, not what has happened to them.
Though some have made an argument that, when describing the following as a "person with cancer" by using person-first language instead of identity-first language where you would describe them as a "cancerous person", we should do the same for autism.
Lydia X. Z. Brown wrote about this back in 2011 for her personal blog (read here) and the article was then shared by the Autistic Self-Advocacy Network (ASAN) where she also interned at the time. She strongly argues against person-first language when referring to an autistic person using the example above.
Because cancer is a fatal disease, there is nothing positive to say about it and it doesn't form a part of a person's identity or affect the way in which a person interacts and understands the world around them. Since autism is a lifelong disorder, it is right to say that it is a meaningful part of a person's identity and that it plays a part in how they experience the world around them, which can often be in much more meaningful and unique ways.
Some other things to think about might be:
by framing autism as being a strong defining feature of who you are, will you run the risk of diminishing other aspects that make you you?
by framing autism as who you are, will it then mean that you are who you are, like who/what you like, do what you do etc because you are autistic and not because of anything else like nature or nurture?
if the wider community uses identity-first language en masse, does that run the risk of alienating those in the community who prefer person-first language, or potential allies who use person-first language with those who prefer identity-first language?
Person-first language was the language by the American Psychological Association so as to move away from previous, and often more offensive, ways of referring to disabled people. By doing this, you are consciously affirming the personhood and humanity of the disabled person rather than define them by their disability without their consent.
As you can see from the above, by having the disability as one part of the person's personhood, you are opening up discourse for the person to share other aspects about themselves such as their height, hair colour etc and therefore add to the many aspects that make that person unique.
Further, by using person-first language, it means that the person isn't solely defined by their disability or disorder but are seen for their whole person and whole identity. Its a bit like asking someone who is loud and fun and extroverted and uses a wheelchair how they would want to be identified: as either "that loveable loudmouth who never shuts up and is always fun to be around" or "that person in a wheelchair".
Here's something to think about - when you speak to people about the language around identity, what language do, say, the older generation like your parents use?
If we think back years ago, maybe around the 1970s or so, autism had a much different connotation then than it does now. Do some of the older generations wince when they hear the word "autistic"? Perhaps because it wasn't as understood back then as it was now and there were those who believed that to be autistic simply meant you couldn't behave yourself (I've actually experienced someone saying to my face "autism means you're a little shit") and so would be disciplined disproportionately more than those who weren't simply because of how they responded to and understood the world around them which at times could be highly overwhelming.
Old scars run deep, regardless of if they look healed or not. And old traumas can be a powerful factor in advocating for something so strongly, which here could be person-first language.
However within the autistic community, when the feature of a person (such as autism) is so deeply a part of who they are, being referred to as a "person with autism" can diminish that unique feature about them and diminish the way they experience and understand the world around them to being lesser just because the world isn't necessarily geared towards autistic people.
Particularly with autism as it is a lifelong part of the person, there's no way to see the person without the autism. The irony is not lost that it is invisible, but the point is that it is integrated into who an autistic person is.
For the Marvel movie fans among us, the identity of Steve Rogers as Captain America isn't in the shield and the red white and blue uniform (the accessories); it is in his character, his values, his courage, his honour, his willingness to put his life on the line for others. These are aspects that are part of him, that are integrated into his character before he was given the super-soldier serum.
Another thing to think about is that, whilst person-first language was developed to promote respect and to move away from the offensive language used previously, the concept is based on the idea that disability is negative and something that you shouldn't want to be or want to see.
But by separating the person from the disability or disorder, are you then putting out to the world that the disability or disorder is something that you want to be separated from you?
So what language should you use?
Some people prefer identity-first language to be used, whilst others prefer person-first language.
I personally believe that neither is wrong. Just because one person prefers one way to the other doesn't mean that everyone will prefer that way too.
Like how we choose what clothes we wear, diversity in expression is just that - personal to the person.
So what is the best way to find out how a person prefers to be described?
Simple: ask them!
We will not be offended when you show that you want to find out what we prefer. If someone asked me what I prefer, I would feel valued and satisfied that I have been listened to and my desires and preferences have been heard and acted upon.
It isn't set in stone as to what language should or should not be used around different people because each individual will have their own preference as to how they want to be referred to.
The only person with the right to decide what they want to be called is themselves. They know what they prefer and it isn't up to anyone else but them as to what to call themselves.
This is the reason why, in my blogs and my content, I use both forms of language as different readers will have different preferences. By doing this, I do my best to include as many people as possible and not alienate anyone, and also to validate each individual preference as being their own and not one that I have any right to say otherwise if mine happens to be different from theirs.
Do you know the saying "treat others how you yourself want to be treated"? A well-meaning course of action, but what if that person doesn't want to be treated the same way you do? Like what if you prefer identity-first language, but the other person prefers person-first language.
Well how about we use the phrase "treat people how THEY wish to be treated".
We all have different preferences, and how you can value, support, accept and champion us here is to learn how we want to be addressed.
And as always, when in doubt, ask!
Be safe and be well! :)
P
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