Advocacy in Motion:
Last weekend was the turning point. Hey, I’m an experienced advocate, I’m even a graduate of Question the Rules. Sometimes, enough is enough, you just can’t take it any more and must take action.
Herby, Me and Kathy Griffin outlined the issues in a previous post called Signing Your Life Away. Click here for the story Signing Your Life Away.
Well, Saturday night I raised the challenge and refused to sign.
The staff person handed me a pen and the paper and was shocked I wouldn’t comply. She became insistent and said, “But you have to sign, we have to file this paper.” So I wrote her a note on a scratch paper and I’m sure she thought I was being a smartass. (Maybe I was.) I read her the words, “responsible for deterioration in condition” but I don’t think she was even listening to why those words were offensive. She was just upset I wouldn’t sign the “official” paper and now she would have extra work to do. I could almost here her thinking, “Why on my shift?”
I thought about it all day Sunday, my husband wisely told me to choose my battles, this was a small thing. I told him Rosa Parks refusing to give up her seat was also a small thing. Of course, then he told me I was being over dramatic (I was) but… I decided this was so small, it was a battle we could win.
When we brought Aaron back on Sunday night, I thought it might console the staff person if I made up a formal release form with the same format as the first paper, just omitted the offensive words. Then she would have a paper to file. She finally said I should call the supervisor, it wasn’t her issue. (Which was true.)
I spoke to the supervisor on Monday and he reaffirmed how important that paper was. All of a sudden this paper was saying all kinds of things it didn’t say: the parents would be giving the medications, take the person to emergency care if necessary…. When he finished I explained I had no problem signing a paper saying I would take responsibility for Aaron and make sure he got good care, but I would not sign a paper saying I was responsible for his “deterioration in condition”. (Geez, I get upset just typing that phrase.)
He couldn’t understand why I wouldn’t sign it when I have signed it all these years (good point). I told him every time I signed it, it was a dagger to my heart.
I explained we were Aaron’s guardian and of course we could give him emergency care. And besides that was not what the language said on the paper. He told me to go up the food chain and call the person in charge of Human Resources.
I really do hate being a trouble maker. I want everyone to like me, and particularly I am always afraid they will take my bad behavior out on Aaron. But sometimes you just have to do what you have to do.
The person from Human Resources called just now, she was appalled when I read the wording on the paper. She reiterated what the supervisor said the paper was supposed to say. And she said she would fix it.
Period. Done (I think). Job done. Amen. Alleluia! One small step for man…
Next week when we again pick up Aaron, I fully expect a new form to be in place. And just maybe, “herby” will be gone and replaced with “hereby”. Goodbye herby.
I’ll let you know. But I think this was one small victory for the good guys! And like Bronfenbrenner says, everything is connected. See post here. Perhaps this will trigger other positive changes.
Call to Action:
What small act can you do today to advocate for someone you care about? Share your success/ challenges in the comments below. Maybe our community can help. We have some world-class advocates here. Let’s make a difference.
Keep Climbing–onward and upward.
All the best,
Great Post Mary!
Language is huge. Often it is only on the side of those in power. They want to blow it off unless it impacts them, then the lawyers come out. Good for you for fighting back.
I know exactly how you feel about not being a trouble maker. I often hesitate when addressing issues at school in fear that it will be taken out on my children; but if I sit by and let things go I feel I am doing them an even larger dis-service!
Good for you and good bye to “Herby!”
Thanks Joe, I’ve been debating whether it is too over-the-top to have the picture of Rosa Parks–she started something big and important.
But, when you are by yourself, sometimes even such a small thing as not signing the form is a big challenge to authority.
Loved what you did. Language matters. Everything counts. Way to go!
On the other hand, I do feel sorry for herby. So he had a minor deficit. Doesn’t mean we should eliminate him. Maybe you could include him in the form you’re going to make up for them to sign each week promising to take appropriate care of Aaron?
Thanks for the blog, Mary. Have you considered adding it to the “Autism Hub”?
Hi Anne, I was thinking of you today. Don’t know anything about the “autism hub” please tell. Maybe we could make herby an honorary member. Don’t I wish I could get them to sign that Aaron would not deteriorate.