Thursday, July 17, 2014

Writer's Block

There is something I want to write about but I have been tripping over my tongue trying to get it out.  I was talking about it today with a very wise friend, James Gideon, who happens to have FASD.  With his permission, here is our conversation:

Me:  I've been working on a post on how much knowing a community of adults with FASD is out there inspires me, how much hope it gives me for my son and my brother but I am having a hard time finding the right words because the inspiration I get from you guys is just so BIG.  None of the words I come up with seem enough.

 James:  Then say exactly that

Me:  It’s so important to me. I want to say it RIGHT.  I am tired of the public conversations around FASD always being about prevention.  Honestly, I don't want to hear about prevention at all anymore.

To me a “prevention only” message says that my son, my brother, you, RJ, SavAnna and all the others affected should have been prevented from being who you are.  I can’t say that.  I can’t even think that.

I LIKE you all – I even LOVE some of you, exactly as you are now.

So what I want to hear is us talking about is how to make the world work for people with FASD - how to just make things easier for folks affected

James:  Well that's what I would write, what you just told me. Write it from the heart.

I still hemmed and hawed a bit but in the end I decided James is right.  It’s more important that I say it at all than whether I say it just right.  So there you have it. 

I can’t get behind anything that says these folks are less than, or should never have been, who they are.  I do not like them in spite of their FASD, nor do I find them inspiring because of it.   I just like them. I am inspired by them because they are awesome people.  They are individuals with a lot of life experience, wisdom, compassion, energy, passion, and quirky humor.  FASD is an inescapable part of who they are but only a part.  I say inescapable because it is exactly that.  They do not “have” FASD like someone has a sweater they might leave behind or throw away.  They live with FASD and they do it very well.  I want to see us working, like they are, on making that possible for all people affected.  

You can check out the awesome James Gideon  here  if you would like to hear more of his great advice.  He's also given me permission to share some of his "FASD Tidbits" here from time to time.  Thank You James!!! 

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