Down Syndrome – And The Chokehold of Guardianship

When she was home in July, the guardian made Amanda cry again. She broke down in the Northwood, one of our favorite restaurant hangouts on Drummond, begging him to “Please, I just want to hang out with Nancy. Please, Ted.”

He said, “I’m sorry.” He stood up and grabbed Amanda by the shoulder, encouraging her to get up and leave with him.

“You’re abusing her right now!” I shouted.

In what amounts to the most heartbreaking scene I have ever witnessed, Amanda tearfully complied. This 48 year old woman with Down syndrome had to endure the public humiliation of being treated like a child. But she did it with dignity. She got up, walked out of the restaurant with Ted and his wife, and meanwhile, I restrained myself from punching anyone in the throat.

I had traveled north and stayed on the island thanks to contributions from friends who wanted to see Amanda and me have some quality time together. One of the reasons the siblings feel free to crap all over us is because they know I don’t have a lot of money for legal fees. Thanks to the moral and financial support of friends, I was able to afford to get up there, pay for accommodations, and to feed myself and in the meantime try to find a civil way to make peace with Amanda’s guardian.

Before the restaurant incident, after which all bets were off, I had offered him a meeting of the minds. Instead, he stood outside the camper where they were staying, and accused me of all kinds of acts that were complete lies. Because when someone has done nothing wrong, what else can you do? For an example, Amanda was in the cart when the traces broke in a 1999 accident with Trudy where I was pulled out by the reins. I smashed my face to smithereens and needed surgery. Amanda remained sitting in the cart, unhurt. (The whole incident is recorded in my book, “Return to Manitou.”) Ted has decided that this is the very incident that caused Amanda’s blindness in one of her eyes…. Despite the fact that Amanda told him she wasn’t hurt in the accident.

This is the scope of evil that Amanda now lives with. If you can’t find a reason to emotionally batter a person, then make one up. Better yet, base it upon a true incident, and then twist the knife.

Amanda’s been having eye problems since as far back as the early 1990’s when she was still in school. Looks like I will have to see if my ex husband would be willing to write another affidavit to confirm this, too. God knows the other siblings won’t… Actually they probably wouldn’t remember anyway. They didn’t spend that much time around her.

Where was Ted when this accident occurred? Arizona, of course. Man, he sure knows a lot about what goes on around here. Amanda and I both have eye problems, but he must have pretty good vision to be able to see everything with such clarity, from such a distance.

Friends pointed out that the seatbelt is positioned across Amanda’s throat. I politely told her guardian that Amanda needed a booster seat. “She’s such a little person. I’m sure they make some for adults that wouldn’t be too humiliating for her.”

“She’s not a little person!” he snapped. “She’s 4 foot 10 and 150 lbs! She’s fine.”

Can’t tell him anything — even when it comes to her well-being.

One year ago today, he made a scene at Jon’s funeral. Our brother had died. His ashes were in a jar. And yet Ted thought it would be cool to forbid Amanda and me to go out for pizza and a movie with Jon’s widow, Judy, like we used to do in the old days when she lived on Drummond. Why did he forbid this? Same kind of crap. Oh, and Amanda and I are forbidden to keep calling each other “blood sister” — even though we have been using the endearment for 40 years. But he doesn’t approve of that.

It’s the hallmark of a narcissist. If you see that someone has something, take it. If you see a loving relationship, break it up. Anything that has nothing to do with you must come to an end.

Incidentally, during this exchange at Jon’s funeral, our sister Raechel decided to physically assault me, grabbing me by the arm and trying to pull me away from Amanda.

Scene from Jon’s funeral.

This whole group needs a proverbial dousing from a big ol’ tub of lemonade. Cool off, people. Get a little taste of reality. Have some sweet and sour. Pull your heads out. Really…. Don’t you have something better to do than to try to make life miserable for a disabled woman?

All we want is to be left alone, to have our movie and pizza in peace.

If Amanda wasn’t worth a monthly stipend, I daresay things would be a lot different. In short, they would have dumped her on me so fast my head would spin. Like they did our parents. I was glad to be their caretaker — but nobody else was the least bit interested in Amanda back then!

Money talks.

And so does my blog, doesn’t it? During our 2019 meeting, when I asked the guardian what he wanted from me, the answer was, “Stop blogging.”

He wouldn’t say for how long. He wouldn’t make any promises. I was supposed to just stop blogging, indefinitely, and then maybe — just maybe — I could see Amanda again.

So Amanda is held hostage, in his hopes of controlling my first amendment rights.

I don’t negotiate with bullies. Anyway, he doesn’t uphold his agreements. He said he was going to be on Drummond over the 4th, and that I could visit Amanda at that time. My friend Cindy and I drove six hours and spent a boatload of cash to go look for her on the island, to find that we had been tricked. They weren’t there. We drove 12 hours for nothing. Cindy brought gifts she had made for Amanda.

So Ted lies. I will not be making any deals with him. But I told him the answer to his blog conundrum is so simple, and it’s right in his hands. You don’t want your nasty actions featured in a blog? Do the right thing. Give me something GOOD to write about.

I would be happy to share good news. Ecstatic, in fact.

Thanks to the Drummond community. Someone spotted Amanda and let me know she was around. It was later in the month, after the 4th. I had to make another trip up. Everyone knows Amanda and they all know she’s being held hostage. That’s the beauty of a small town!

There is much more to tell about the 2019 summer on Drummond, about the abuse from Amanda’s guardian, about his lies and manipulation. I imagine it will come out as I feel the need to vent. But really, isn’t the next step to file another petition?

This will be my third petition for visitation. The other two were in Michigan and both judges refused to meet Amanda in person.

This time, it will be different.

If you watch the videos you will see that Amanda has no trouble communicating.

As I mentioned, I’ve got an affidavit from my ex, stating that Amanda lived with us every summer for a lot of years, and that our relationship was never anything but nurturing toward her. I am sure he would be also willing to confirm that she was not injured in the cart accident.

It’s pretty bad when the guy you divorced is a more upstanding citizen than your own siblings. But, this is our reality. Amanda adored Bruce. They were very close.

One of the reasons that guardianship is so damaging is because it’s so hard to fight. Arizona has better laws, with more regard for the ward’s feelings, but it’s expensive. The petition alone is $365. This is if I stay here in Michigan and try to conduct a hearing by phone, if they will let me.

I can’t afford travel right now. I shouldn’t have to. They should not be doing to my sister.

I will be selling some Elephant Art as a fundraiser. Meanwhile if you want to just send a contribution, feel free. I’m not too proud to accept the help on behalf of my sister’s well-being. I have to raise $365… As a start.

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!
This entry was posted in abuse, amanda, down syndrome, down's, down's syndrome, empathy, guardianship, The North Side of Down and tagged , , , , , , , . Bookmark the permalink.

3 Responses to Down Syndrome – And The Chokehold of Guardianship

  1. Jeannie says:

    I feel so bad that this is happening between siblings. Your sister is a beautiful soul like you and I can’t for the love of God, understand what is going on in these two guardians minds and hearts, what happened to them? I feel that you have all the right to be with your sister and bond like sisters should. What gives another human being the rights over another? Does money speak here or power and control? I will be praying because, through Christ, ALL things are possible! I was there in Northwoods on one occasion and witnessed your visit with her and the two guardians, they were none too friendly with you at all. So sad is this entire situation. Hugs my friend.

    Liked by 1 person

  2. Helen Blue says:

    This abominable situation just doesn’t end. Your brother and sister-in-law will find a special place in hell when their time comes. ‘Whatsoever you do to least of my brothers, that you do unto Me!’ You don’t cause undue hardship to God’s children. From their behavior, I doubt either one of them know the Lord. But you and Amanda do! All of the prayers being said for you and Amanda are not going unheard. God is faithful to His children! Praying you and Amanda are together for good soon! Sending hugs, love and prayers to you and Amanda. Love and God bless ❤️🙏🏻✝️💝

    Liked by 1 person

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