Thursday, April 12, 2012

Semantics and advocacy: Getting it all untangled in my brain

Shoot! I said it wrong!
Again.


In my mind I'm slapping my forehead.


I'm at a meeting for outraged parents about the latest injustice to kids on the spectrum, via government bureaucracy and of course, funding. (Ben keeps asking me why I go to these...I'm thinking he has a point.)


All the other parents said  it correctly. 


"My son____ has Autism."
"Our 4 year old, was diagnosed with autism...."


But I said it wrong.
"My oldest son Aaron is Autistic."


They probably had to hold back the gasps. 
To think that a parent of a "child on the spectrum" would be so insensitive and so wholly politically incorrect. Egads!
He is not his disability!  They are themselves first!


Okay, okay I get it.


But I'm not sure I totally agree.
At first, it was just grammatically clumsy to me, but I soon realized people had very strong feelings about the correct way to refer to Autism. (Autism in general rouses lots of strong feelings). 


So I learned quickly.


Just like I mastered all the endless acronyms and educated myself on the various therapies, diets, read oodles of literature and first hand accounts of families.  But the term Autistic, still stuck in my semantic network. Even though I dutifully phrased things, Aaron has Autism.


But deep down it still felt weird. And I was only doing it cuz--- well I was learning how to be a
"good" special needs mom. And that was on the list.



When I looked at the "people with Autism" speaking out, they use the term "Autistic" all the time.


And they say it with pride. It's part of who they are.
"My name is Temple Grandin, and I'm Autistic!!!!"
Full online communities of "Aspies" wanting to connect and belong within a community of their peers.



A blogger who entitles their blog  "the autistic me" writes:
I created this blog shortly after I'd been officially diagnosed. I've changed a lot in that time, especially in how I perceive myself and my autistic identity. 




When we describe aspects of ourselves, we don't say we have things, we say I'm creative, I'm artisic, I'm musical...things we are proud of. Things we ARE.


While autism shouldn't "define" him, I still feel like it is such a big part of who Aaron IS.


If you don't "get" autism, good luck "getting" Aaron.








The Autistic Hoya includes on her blogs home page a

NOTE TO REPORTERS, JOURNALISTS, WRITERS, AND BLOGGERS:

If you are on this page because you are writing an article, post, or editorial that mentions me, please be advised that I prefer to be referred to as an Autistic or an Autistic person, and NOT as a person with autism or a person who has autism. You can read more about the reasons at the following:

Here's a few excerpts:
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.
But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.
It felt so good to read that. To have my gut feelings validated, to know I wasn't necessarily saying/thinking things "wrong". (She's very clear later on in the article that she respect others choices of using individual first language, as do I...only fair right?)


When I'd say Aaron HAS autism that's when it sounds like a disease, something to be ashamed of, to "get over"  like a nasty cold, or one day hopefully "beat", like someone who HAS cancer. That the "thing" they HAVE, is separate from them, a threat that needs to be defeated, overcome and cured, rather than understood, allowed, even celebrated.


Instead it's deemed thee enemy. A fight, calling for Warrior Mother's to heal their kids.
And maybe some people just need a clear adversary, something to fight. The schools the government, the ignorant person in the grocery line.


But can we really fault people for not having the same struggle as us? Do we know everything about all the various disorders, situations, challenges they could be facing? Can we really fault them for not knowing as much about autism as we do? We want tolerance, empathy and understanding...
LOVE this quote:
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

So even though I may not fight legislation (and how grateful I am to those willing too)

I fight. 

I fight to stay awake after Aaron's had another sleepless night.

I fight back tears when I see others figure out there's something a little off with that kid at the playground and walk away, curious  at  best.

I fight to bite my tongue and stay off my soap box when we get dirty looks from the woman at the til, cuz maybe she's had as bad a day as me.

I fight to maintain balance in our family life admist the invasion of professionals and programming. 

I fight to not give up in this parenting journey that's not going let up after 18 or so years.

I fight everyday. 
I fight to let the good win, for the love to be enough, for the beauty to sink into me and wash away the hard.


Instead of chasing treatments, I'd like to focus on how we treat each other, because I truly believe THAT is the lesson that special needs gives us. 


In some ways especially Autism.  It's like an intense exercise in empathy. To try and understand someone who's very thought processes and  motivations, are so unique.  To illuminate the requirements for love, and see the inherent worth in us all.


Because my Autistic son, is so worth loving. 




Even having giggle fits in his parents' bed at 3 am.


We all are.

3 comments:

KoJoZo said...Best Blogger Tips

Absolutely lovely Chelsea. Well said. Hugs! K.

Lydia said...Best Blogger Tips

Thank you for this post, Chelsea. I'm glad you found my writing to be useful to you, and I wish the best for you and your son.

Chelsea Belle said...Best Blogger Tips

@Lydia
Your so kind to take the time to comment here.

I found your writing more than useful--inspiring, validating, hope-giving, poignant, clarifying, well-thought out and masterfully presented.

Strong but still understanding. Perfect.

This is an opinion I'd felt much about but never been able to formulate properly until I read your words.

I hope to send many a reader your way!