The Audacity of My Sister, Amanda

My youngest sister Amanda has Down syndrome and, if you have been following her story you already know she is enmeshed in a guardianship situation that is rife with controversy.

Amanda is 48 years old and I am currently crowdfunding to try to get her out of the mess.

Despite the attempts of the guardian and others to keep her quiet, she has managed to let it be known that she doesn’t want to live in Arizona anymore.

Amanda has a lot of courage.

She loves her brother, and always will, because that is who she is: Generous, forgiving and kind. Loyal to the end. But she doesn’t want to live with him.

Whatever her reasons are, it shouldn’t really matter. She is not happy. She wants out. She is, after all, an adult.

I have run the gauntlet of associations and groups trying to get help for her. I’ve explained all this in past posts, how the justice system places a person with a disability on the bottom rung of priorities. Amanda has Down syndrome. Therefore she must not be able to make her own choices. Someone has to think for her.

At least, that is the mentality.

I disagree. Amanda has a quick wit and a strong sense of self. She knows who she is. She is also an astute observer and she figures people out. She is anything but stupid.
Amanda co-authored an award-winning book, “The North Side of Down”.

My crowdfunding effort is being ambushed by siblings who don’t want people to help Amanda. They want her to stay right where she is.

One extended family member thought he might be able to bring some peace to the family. He shared the link on Facebook, asking for a dialog, hoping to get a conversation going. He was immediately verbally crucified by one of my sisters. She eviscerated him so completely that when he called me afterward, his voice was shaking.

The same thing happened to a friend who contributed. She received an unwanted — and unwelcome — message from Raechel. She is not the first person to be trolled by Raechel. “Nancy is this, Nancy is that.” She didn’t even use my name — calling me “Nasty” instead.

The Trumpian sleight of hand is to get you to look the other way. They want you to stop thinking about Amanda and focus on me instead.

If a person has the nerve to stand up for Amanda, they are in for a verbal beating, by any one or more of some six or eight people. Who needs that?

Ironically, the actions of my siblings only serve to prove my point.

But would-be advocates, people who know Amanda and some who know me, recoil from the bullying. The toxicity is palpable. The verbal barrage of these siblings is so needless and vicious it makes you wonder how their hatred hasn’t eaten them alive.

Others, the type who like to roll around in the dirt, will get down in it with them and rejoice in the slavish rancor.

Whatever. Knock yourselves out, guys.

This is not about me. It’s about Amanda and how the guardian is forcing himself down her throat to the extent that he wouldn’t even allow us to see a movie with Jon’s widow, following his funeral. Amanda must be kept under strict control at all times.

Amanda is tired of this.

Hell, I am, too.

He is planning to bring her to Michigan in July and pull the same crap. No. No sister time. No Girl’s Day Out. No movies.


Sleight of hand.

Amanda is worth money. Her caretaker gets paid to have her. She’s a cash cow. If she talks, people might find out she wants to leave. If she leaves, they will lose all that income.

The system needs to change. But that will take time. For now, I say, enough. I am raising money to do what I can for Amanda with whatever I can scrape together.

Hiring a lawyer is ridiculously expensive. Maybe I won’t make that goal. But there are other things I can do. I can file another petition and hope for a more sympathetic judge, one who will listen to Amanda herself. Then she can tell him. Perhaps he will amend the guardianship and we can go see a movie.

It’s all about a movie. And a pizza.

One small step in the right direction would make a world of difference.

For now, that is all we want.

No one should have the right to silence anybody. Ever.


About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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