As a blonde headed blue eyed person who is tall and semi-good looking and somewhat intelligent (yes, this is all relevant) ... I have rarely experienced discrimination and prejudice. A few times but very minor.
Then I had children of color. And I started experiencing it. Someday maybe I'll write examples of that.
Then I had children with special needs. And once again, experienced discrimination and prejudice.
I thought I was semi-prepared.
But nothing could have prepared me for the prejudice and discrimination I experience routinely with Manny. It never occurred to me. Maybe it was naive on my part ... but I truly wasn't prepared.
Like yesterday, I was feverishly attempting to get help for Manny in the ER. He was passing out. I couldn't wake him up or keep him awake (a kid who never naps). He would open his eyes and then roll right back into his head. I mentioned it to every person who walked in the room.
Looking back, he was severely dehydrated (which I knew) and had a close to coma level blood sugar. And it is my own stupid fault and naivitity that created this situation.
How? Because I ASSUMED they were listening to me. I assumed that they heard me when I said this is not his level of activity or consciousness. I assumed they were taking in that information and processing it. NEVER occured to me that they would look at his disability and assume that was his baseline (despite what Mama was saying).
They went with their experience, not what I was saying. That is discrimination and prejudice. And because I didn't realize that was going on, I didn't know to say it in a different way.
I figured this out through the morning today as I processed the incredibly botched ER visit.
But it was confirmed today by one of the docs. In her defense, she is the one who gave him fluids and ordered tests and ultimately admitted him. But she came in today and saw him sitting and talking and playing toys and was shocked. (She said so.) And then when I asked what happened, she said that she (and the others) assumed that the unconscious level was his baseline. And no, they didn't even hear me.
And that all honks me off to no end. That I wasn't heard is frustrating enough.
But the prejudice is sickening to me. He got a lesser level of care due to a perceived disability ... by her own admission. How the heck is THAT OK? Even if that was his level, he deserves the best care (like fluids) but it's not so it makes it that much worse.
I'm not sure what I will do with this information once I process it. (Nothing towards the hospital or docs for the record.) Someone commented on the blog that I should write a book ... I have actually thought about this. A handbook for surviving the hospital visit with a complex special needs kid. I certainly don't have all the answers so it would be a collaborative book ... but it's a good idea. I would have read it!
So back to my issue at hand ... I have never seem myself as an activist. But this might push me into the world of "sanctity of life" activist. Use my public speaking skills to promote.
In the meantime, on a Manny level, I have decided that if ever this is in question again, I will first be aware that prejudice is likely happening. Secondly, I will show them a video of his typical behavior so they can SEE with their own eyes what his true baseline is and not just take my word for it. (Afterall, I had one doc tell me months ago when he thought Manny was cognitively intact, "Every Mother thinks their child is present." Yes, that Doc eventually apologized to me.)
And to you, if you're a person who interacts with special needs people, give them the benefit of the doubt. And even more than you have been doing.
If you're an advocate for a special needs person, find a stronger voice. Speak for them well (because people aren't listening).
And to my beautiful, very capable son Manny ... I am trying. Thanks for being patient with me.