What did she say?

Hello my friends.  I am sorry for the radio silence but I’m taking the time  to get my head on straight. Having a disability means, well at least for me, it means things can get overwhelming.  It’s not the phyical limits that cerebral palsy places on me.  Those can get annoying but for the most part I’m adjusted to those, since those things have been part of my life forever.  It’s more often  the emotional work and preparation I have to do to go out in the world and live my best life.   It can wear on a person to know that every time they leave the confines of their own space someone will make a comment about them.   Honesly Friends there are.days, when if I  do not have to leave my house I just don’t.  Understand this is not about my feelings.  It takes a lot more than someone I don’t know saying something nasty to hurt me   The repetive nature of comments about my abilities just becomes exhausting.  Positive well meaning comments or negative nasty ones , there isn’t much of difference in how tired I get of listening or explaining, something to someone.  Or smiling at someone who is only trying to be friendly by asking me if I want to race them using my scooter, or if I’ve every gotten a speeding ticket.  I strive to be kind in those interactions because  the intention is to be funny.  They don’t have anyway of knowing that I hear that “joke” many times a week    Last week I had the most ridiculously funny thing happen to me.  So I thought I’d share it with you all.  One day I was going about the mundane things of daily life a woman approached.  She stopped me and exclaimed with all the wonderment and surprise that  usually happens when people like this stop me .  Oh how wonderful  I was out alone and could do various things without a helper.  That happens to me often enough that I usually say something to the affect of yes, I am pretty independent smile at the person and move on with my day.  But this lady went on at some length in that voice that people usually reserve for small children. I couldn’t  find an exit. Graceful or otherwise and so I listened to her go on about how my parents must be so impressed  with the things I can do,.  There’s this point when people are using that voice that I tend to tune out what they are saying.  So I was thinking about the other things I had to do that day , until she said “Most people with Downs, need much more help than you do you should be proud of yourself.   (Wait wait what did she just say???).  I said ma’am I don’t have Down’s  Syndrome.   She patted me on the shoulder and said  “that’s right my friends and I call it up’s syndrome.”  For the first time in a very long time I was flabbergasted.  That was the most ridiculous ten minutes of interaction I’ve ever been involved with.  I’m not sure why she thought what she thought.  I’m not particularly well versed in all the in and outs of what it like to live with Down’s Syndrome.  Except what I can glean from the few children I know.  I don’t know any adults with Down syndrome  personally.  I can only guess that she has slightly  removed experience with that particular condition (not the best word I know) and so when she saw me  she thought, that must be my struggle as well.   I honestly believe she meant what she said to me as encouragement or compliment but if I could have those ten minutes back  I would love to tell her that Down’s Syndrome got it’s name because the person who identified  it  last name happened to be Down.  Somehow I think that would have been lost on her and just made me seem snarky and bitter.  In truth, I really needed that .... the whole thing was an amazing stress reliever.