Saturday, November 1, 2014


~"What I do is between me and the Lord, to examine and possibly alter the state of grace in which I live, and thereby the state of grace of anybody who listens." Townes Van Zandt

 We were driving to the Halloween/party store the other night..all six of us squeezed  together in one van. This has slowly been happening less and less.  As the kids get older,(and can stay home alone) this type of adventure becomes rarer..So I was enjoying all of us just being together..the boys and their long legs squished into the back (because that is where they have ALWAYS sat) and the girls in the roomier second row seats. Omar and I up front- listening to them talk to each other..having random bits of conversation..("Does Ebola have something to do with your elbows getting sick?")  mostly they were focused on favorite holiday.."When did Halloween start anyway?"..."I think it was in the year seven.." "That doesn't make sense!  Everyone would have been seven years old!  Seven years old people don't make up holidays..because they don't have anyone taking care of them and feeding them and they were mostly probably eaten." 

I just adore they way my youngest thinks.She has an opinion on EVERYTHING...usually delivered with great disdain..She is so very passionate, so full of ideas..opinions...AND, she saves them all for home as she is not comfortable speaking at school. Which sometimes works against her..

  She came home the other day just beside herself. A group had come to the school to bring disability awareness and sensitivity training. Only...they didn't seem to be very aware or sensitive.  At least not to my girl..I know of this group as they have come to our school every year we have lived in town..I'm not a huge fan. They talk about changing attitudes and bringing respect towards people with disabilities..but how do they do that? By having non disabled people discuss what disability is. That makes no sense. You can not talk about inclusion when you do not include the people you are talking about in the conversation.(reading aloud a story or stories about a disabled person is NOT inclusion) It sends the wrong message. Us and them.  Unfortunately, it was one my daughter heard loud and clear.
 Imagine hearing an adult-an advocate-a sensitivity trainer-discussing a part of you..that  very real part that impacts everything that you do,..just imagine hearing this advocate discuss with another child that they hoped that a cure would be found for this part of you,....that your kind of brain didn't grow right..imagine hearing that at eight years old....As my daughter later wrote "It was shocking. I thought it was true.I got teary made me feel different..but not in a good way."

  We are so weird about discussing disability. We talk around it..Pretend that there really isn't much of a difference between abled and disabled. Pat ourselves on the back for being so open minded and inclusive.  But really-are we?  Inclusion isn't declaring the "popular "can get a date with anyone" boy or girl"- a hero for asking a disabled kid to the dance, inclusion isn't cheering extra loud when an autistic boy makes a basket in a regular basketball game, inclusion isn't purposely sitting next to a person at lunch because they are disabled. No, these gestures, as well intended as they may be, are isolating.  They are a direct reflection of how disability and disabled people are viewed. Less then, incapable, one size fits all.
No amount of advocacy, or sensitivity training is going to change that until we include the disabled community in the conversation. That is the perspective we should be listening to. 

  My youngest had a bumpy week...luckily it ended on Halloween. My little town does an amazing job of it..closing off streets so kids can trick or treat safely, homeowners going all out with decorations and costumes, local businesses giving away hot drinks and treats..the senior center has a haunted house (and it is scary!)..all of this kind of restores your faith in the world..keeps you hoping that maybe things CAN change...My kids are quickly growing older,,they are moving forward...I need to believe that the world will move along with them..


Dawn Marcotte said...

Thanks for sharing. I agree that the voice missing from the conversation is that of the people on the spectrum. I am hopeful though that as this generation that is so plugged in to the internet grows perhaps they will begin to speak up for themselves - not waiting for an invitation but giving themselves a voice.

kathleen said...

@Dawn-the group contacted me and said that they were working on including people in their presentations-so that's a start..There are a few self advocacy groups..(ASAN) Unfortunately, the people who are most affected by disability still don't seem to have a public voice...hoping to see that change..