Another day on social media and yet another conversation about identity first language. I imagine some readers may think I am being a little obsessive and it’s just a bit of Âûtistic obsession or something. The thing is though that words really do carry weight. They are heavy and potent with meaning, they are loaded with cultural bias. And there’s the rub. The bias, the loading of meaning, that’s where all the weight is. So here’s the thing. A lot of the disability services industry are trained to use what is known as person first language. The line of reason says that we see the person not the disability. We see the person as greater than the disability. Well I have something to say about that. If identity first language stops you from seeing the person first then perhaps the language is not the problem.
Image shows a woman writing in red the words Just Words
The industry though has loaded so much culturally laden meaning into the words though that they seem unable to even hear it when #ActuallyAutistic people express their preference for identity first language. Believe it or not I have had this very situation on a number of occasions. It’s quite disconcerting, it is upsetting, and it is anger provoking.
There was a situation where a Facebook page known as which is owned and run by an Autistic person published a meme which uses identity first language. A comment on the post along the lines of:
I wish this site would use person first language because people are more than their label they are not defined by the label of their diagnosis. They are more than their diagnosis.
A number of page followers who are actually autistic jumped into the comments, posting the fact that identity first is preferred by many autistic people. Posted some links to some blogs by actually autistic people and explained some of the reasoning behind it. One would think that the person posting the comment would take this on board but no she continued to post on the page using person first language and stating that essentially in her opinion the person was first and so it was not possible to use person first language.
Excuse me!
Here we have a situation where a person who was involved in the disabilities industry and as such claimed to advocate for disabled people was refusing to respect the wishes of the people she claimed to be advocating for. Right. Okay. That’s what I call an extremely culturally loaded set of words. So much so that the words have become more important than the people they are meant to be describing.
And another thread, another disability worker, another demand for person first language. This time directly stated to an autistic person that they should never use the word autistic as it was highly offensive. Again people explained the situation. Again links to blogs and rationale was presented. Again this disability industry worker has disrespected the disabled persons choice of identification.
Excuse me! Again!
Okay so maybe you’re wondering why I allow myself to get so pent up and all about this. Well it really is as I said because words are weighty, they really do matter. Lets just thing about this for a moment. The great consensus, once you move away from the woo woo of course, is, that Autism is a difference in neurology, in fact we will often call ourselves part of the neurodivergent community. So if that’s the case it is intricately intertwined into our very being. If it is this, then, it must be a part of everything we do, a factor in every sense we have, every thought we have, every action we take. It is in effect not in anyway outside of us. Just as a gay person would say everything they do is influenced by their very orientation as sexuality is intricately connected with who they are, we as autistic people have a similar understanding.
In effect I can not in any way be separated from my autism. My autism is not something I have. It is not something I am with. Or as an Autistic woman I know has said “it’s not like my handbag that I can put down when it suits me.” It really is an essential intricately connected innate part of my very being.
Two faces pointed towards each other. The faces are speaking and the faces are filled with words.
What this means then is that when a person says “oh I prefer person-first language” it disrespects my very personhood. It says my way of being, my innate neurology is somehow not worthy or not part of my personhood. And you know what. That is hurtful. And you know what else, that is what is highly offensive. Not the choice of language. The very fact that by telling me that my choice of how to refer to my self, is somehow unacceptable, that is the thing that is an offence.
I am here to say that the idea of me being more than a label, more than my diagnosis, not defined by my diagnosis, this idea is an offence, this idea is a furphy. In fact I would contend it is in fact ableism dressed up as advocacy.
It really is ableist because it disrespects the disabled persons choice. It is ableist because it says your identity is somehow less than what is deemed to be “normal”. It is ableist because it flies in the face of advocating for the rights, wishes and best interests of the disabled person involved.
So yes, words have weight. And the weight of hearing myself described with person first language is a very heavy weight indeed, such a heavy weight that it hurts me, it offends me, and I do not like it.
It says to me that you do not accept that I am autistic and that autism is interwoven into me, it says that you don’t accept that I am not diseased and disorder. It says that you believe there may be a cure and I may be able to overcome this autism thing.
Well I am here to tell you that this is not possible. And even if it was I would not seek it. I would not seek it because if I overcame my neurology I would not be me, I would be someone different and that is not acceptable.
I am here asking you. Please, do me the courtesy please, respect my choice please, yes, please, dignify my self advocacy by adhering to my choice and preference. Thanks.
I am Âûtistic. Identity First Matters. The words we choose are weighty because they represent weighty matters.
On the face of it, it seems like it should be simple. “How do you identify, and what terms do you prefer me to use when I refer to you?” Doesn’t seem hard…
Some parallels here with what I understand many Deaf experience: a linguistic and cultural identity, a source of pride and a pretty strong preference for identity-first language.
(I am not autistic or Deaf)
But if I am not mistaken you are in fact Neurodivergent 🙂
But yes you would think it would be pretty simple wouldn’t you.
Totally agree with you.
I am neurotypical (though geeky and was considered weird as a kid). Several members of my extended family are autistic. I used “with autism” ONLY until I learned that the autistic community generally preferred autistic. It took a little bit of time to get over the “strange” of the transition, but now my go-to is autistic or “on the spectrum” until I know the preference. I generally use “on the spectrum” with non-autistic people because you never know how they’ll react.
I am not, yet, working as a professional in the healthcare world – I’m going back to school to get a nursing degree, and plan on using that for autism advocacy in the medical field. I will use AUTISTIC, and I will explain why. I’ll direct professionals to the reasons, and hopefully they’ll “get it”.
They may “have” to use “with autism” due to professional considerations, but they can sure as heck listen to their patients and RESPECT THEIR CHOICE TO SELF-IDENTIFY. Any “professional” that doesn’t respect their client base, is not, in my opinion, professional.
Hi Richard, I absolutely agree with you. I am autistic. I identify as ‘autistic’ because it’s part of my self, my being. When people say I’m a ‘person with autism’ I find that confusing becuase, in my mind, it’s just plain wrong. Autism isn’t an optional extra it’s part of me. I’m an autistic person.