Thursday, October 20, 2011

Person First

We had our first Special Education Parent Advisory Committee last night. Just call me Madame Chairperson for another year, thanks. I hope this year's opportunity doesn't slip through my fingers like last year.

Our director of student services handed out a very nice article about person-first language. Language is a tricky thing, since it is so powerful, yet so flexible. Language is a tool for us to communicate ideas, knowingly... or unknowingly. Showing respect should be of the utmost importance, and person-first language should absolutely be the choice, particularly in professional contexts. A professional, not knowing me, my family, or my children, should refer to Joey as a person with autism. The emphasis when speaking about Joey should always be Joey; just as you would probably prefer that anyone speaking about you should emphasize you, not some facet of you, large or small.

You may have noticed that is not how we solely refer to Joey ourselves. In fact, I get emails about it regularly. For us, Joey is autistic. Autism is not something separate from Joey as a person. It simply is a fact, one of many ways to describe Joey. When it is the important fact in the context, then it becomes the adjective of choice as appropriate, just like any other: Joey is tall. Joey is happy. Joey is squishy. Joey is intelligent. Joey is handsome. Joey is autistic.

The great thing about using person-first language is that it emphasizes the person, something that gets lost in a world of labels and misinformation. Or more properly, someone who gets lost, especially when they are surrounded by people who are intensely ignorant of disability, ability, and special needs. It become important to communicate to such people that everyone is a person. It is vital to emphasize to our children that they are who they are, to highlight their ability rather than disability, and that their disability is a neutral factor in their existence; they are not poor, afflicted, suffering victims. They simply are who they are, and we start from here.

Yet there is something in acknowledging that they are who they are, and that some disabilities are intrinsic to who people are. Joey would not be Joey if he was not autistic. He would be a completely different person. I don't even know who that person would be, or would have been. They don't exist. Joey is not, to me, just a "child with autism", because there is no such person as Joey without autism.

But far more importantly, we are paying attention to how Joey refers to himself. He is not yet talking about autism. Just as when he was small and I had no name, I just was, for Joey, autism just is. One day, he will process that the way he thinks and understands and experiences the world is referred to by the rest of us as "autism." Then comes the true test of person-first: referring to Joey as he prefers to refer to himself. Will he be "me, with autism", or will he simply say "I am autistic"?


farmwifetwo said...

Whereas IMO - and that of our first OT coordinator - a label solely exists to get services.

My son's HAVE autism. My eldest has never been told what his dx is or that he even has one. Has he figured out something is up... well since he just got a computer at school and nobody else has one I guess it's a little obvious... BUT, it's not "who" he is and we are working this year to explain to him what exactly his issues are, and what he needs to work on so we can tell him next year in Gr 8. Gr 9 he must be part of the IEP process. Again... he'll never be allowed to call himself "autistic", never be allowed to use it as an excuse. Never be able to claim to speak for his younger brother like these "adult autistics" try to do.

Autism... is not who either of them are. If it was, we'd never have gotten as far as we have with both of them.

Joeymom said...

Autism is not an excuse. It is an explanation that allows for appropriate problem-solving.

I'd be cautious of not "allowing" my son to identify himself for himself. Identity is a fragile thing. It is one thing to make clear that autism is not an excuse to not work on challenges, and to help your children understand that they are each unique individuals with their own voices. It is quite another to deny someone their right to form their own identity.

There is no one facet that is the end-all of who anyone is. Just as I am not just any descriptor you might attach to me- it is a facet of a whole that takes a lifetime to describe and to be.

Stimey said...

I'm a little stressed out by that first comment.

I also regularly get comments and emails that tell me I should use person first language, when I have made a very conscious choice to say autistic. (Although I do often use the two interchangeably. I like to use what sounds best in my sentence.) I do know that once Jack has an opinion on the subject, I will refer to him as he prefers, just as I refer to anyone else with autism as they prefer.