Thursday, January 16, 2014

Why I refer to my son as "Autistic"

"You should use person first language. Calling someone Autistic is demeaning."

It never ceases to amaze me how often this phrase comes up. There is hardly a conversation about Autism that goes by without someone attempting to correct the use of the word "Autistic" and replace it with "person who has Autism".  

This shouldn't really be that surprising. When it comes to discussing disabilities, person first language has been the strongly enforced social standard for years. Those of us who consistently use the term "Autistic" to describe our children are generally chastised and instructed that our language is disrespectful. 

What is truly shocking though is that often these politically-correct admonishments are even used against Autistic people themselves. Generally, those making the corrections do not, themselves, have autism. 

You gotta love when someone else tells you who and what you are...

I first encountered this debate when I started reading a lot of blogs written by autistic self-advocates.  These are the adults who, through various means including speech, writing, and electronic communication, have managed to find ways to communicate their thoughts in ways that we "neurotypical" people can understand.  The internet has created a forum for them to be heard. Where once it was believed that Autism was a silent condition, all of a sudden the world has erupted with the strong voices of Autistics of all ages, screaming in unison: "Listen to me!"

And so I started to listen


Because, if I truly believe that Sam has thoughts, feelings and opinions of his own (which I do), I can not negate the fact that all others like him do as well. And I believe that all humans should be listened to and respected, particularly on matters that concern them directly. 

As I reflected on their voices, most of which are adamant about Autism being a core part of their identity, I was reminded of a situation I once found myself in...

It was back in University, about 10 years ago. We were in political science class, discussing feminism. Being proud of the fact that I believe in sexual and gender equality, I proudly refer to myself as a feminist and was shocked to find many women hesitant to use the term. We engaged in a healthy, passionate discussion about the "why" and "why not" of the situation, and I was blown away by the diversity of opinion on the matter. 

But I was also troubled;  throughout the conversation, many of the male students in the class were eager to share their opinion on the matter as well. In fact, they seemed even more adamant to do so than the women in the class were. They spoke over us, loudly and- in many cases- mockingly. The told us that we were wrong. That they were right. They told us what we should think...

Of course, I wanted to hear what they had to say, as I do believe that the male voice is an important contribution to all discussions surrounding sexual equality- but the phrasing left a lot to be desired.  Over and over, phrases like "Feminists think..." or "All women believe..." or "Women must..." or "Feminists do..." resounded, pounding in my head like crashing cymbals.  

I couldn't help myself from wondering: Who are you to tell me what women think? Who are you to define what feminism means to me? Who are you to tell me what I can and can't do, what is part of my essence as a female? You are not a woman. You do not know what the female experience is like. 

In the back of the class, a fellow student who seldom ever spoke raised his hand.  He said quietly: "I have no idea what feminism should be or shouldn't be. I think that should be up to women to decide. After all, it's their identity we're talking about. Not ours."

Aha! Yes! That was it! That was exactly what I was thinking and feeling, but unable to put into words! And amazingly enough, it came from a man. 

I realized that day that I can not speak to the lived experience of another individual or group. I do not have the capacity to say "I know what it means to be homosexual" regardless of how many homosexual friends I have. And so when my homosexual friend asked me to use the term "gay" (because the formality of "homosexual" made him feel like I was afraid of using the term gay), I acquiesced, and have generally used the term "gay" since. 

Likewise, when observing the Idle No More movement, I understood that- while I can be a vocal supporter- this was not my cause to champion. I am not a member of the Aboriginal culture. I can not speak for them; I can only speak of them. And one should never speak of someone else when they are able to speak for themselves. 

So now, 10 years later, I find myself faced with the same situation. Only, in this case, the parents are the men in the room, desperately trying to be heard over the voices of the self-advocates. 

We know our children. We know our experience as parents. We can speak to that experience, and offer extremely valuable insight on how society can progress towards acceptance and accommodations. 

The voices of parents are important.

But they can not be, and should not ever be, louder than the voices of the Autistics, particularly not on matter of identity and lived experience.  Because, while they may not know my son, they have a much better understanding of what it is like to be him than I ever will. And, as he is still very young and still mostly non-verbal, they are the closest thing he has to a "voice" on the matter.

They are speaking. They are asking us to stop talking and to listen to them. 

They have chosen the word "Autistic" to define themselves. 

Choosing to do otherwise would be to put my lived experienced and beliefs over theirs. It would mean trying to speak louder than their voices. It would mean that I believe that my vicarious experience of what it means to have autism is more important than their direct experience.

And I just can't be "that" person. 

So I will call my son "Autistic", until he himself asks me to do otherwise. 

Self Advocates: Please keep speaking. I am listening. 

1 comment:

  1. I wish to get in here and offer some additional comment.

    Before I begin, I will tell you one point of disagreement. I do not consider the voices of parents important at all. I, however, am a thirty-five year old man who often wakes up screaming and will not talk to either of his "parental units" anymore. Too many parental units think their voice is more important than that of autistic individuals, or even that of their own children.

    So far as I am concerned, and I do not believe I am alone in this, any autistic adult who tells us they prefer what I call "separationist language" is misguided and ignorant.

    They are ignorant of the fact that separationist language is exactly that. Designed to make us view our neurology as something separate to us, ergo removable.

    This weekend, I was once again forced to explain to someone, a police officer no less, why "suffer from autism" is not merely unacceptable, but a slur. As far as I am concerned, "person with autism" is a stepping stone alone that bridge. Autism Speaks For Etc Etc want the autistic population saying "…with autism" so that they and other curebies can start phasing in "suffers from…". Which is simply not on.

    We do not live in vacuums. People's choices in everything have consequences for others. And when someone choose "…with autism" or "suffers from…", it has consequences for other autistic people. I encounter real physical sickness when someone even writes "…with autism" in front of me.

    If any one of the children related to me were told they "have autism", I would be stepping right in and telling the person who uses such language they are not welcome around that child anymore, and explaining good and hard to the child why.

    Because we do not live in a perfect world. We live in a world where a villain with more money than I will ever hear of in my life wants us to only be read about in history books in future (her words), and separationist language is something that furthers her goals.

    I will share this post with as many as I can.