Down Syndrome, Guardianship Abuse: A Timeline

Once a guardian figures out he is an oligarch and answers to no one, including the law, there are no limits to his behavior.

This is a rundown on how the situation escalated with my sister, Amanda, who has Down syndrome.

The late Senator John McCain said, “America didn’t invent human rights. Those rights are common to all people: Nations, cultures, and religions cannot choose to simply opt out of them.”

I wish that were true. Unfortunately, America opts out of human rights. Cultures opt out of human rights. And, religion opts out of human rights. At least when it comes to Down syndrome.

My sister Amanda doesn’t have the right to call me any time she wants. She doesn’t have the right to have pizza with me. And now they are trying to tell us she can’t call me Blood Sister.

A lot of people ask why our siblings hate me so much. I don’t have the answer other than to say that it’s been going on for decades. I never really understood it, but I have always been different.

  • I like animals and prefer to keep to myself.
  • I wanted to stay in the woods rather than go to gatherings.
  • I never had kids.
  • I am not obsessed with food.
  • I was Dad’s favorite — we shared a love of the outdoors and books and Lewis and Clark lore.

I never understood the hostility. I mostly ignored them and just did my own thing.

Probably the worst thing about me, at least in their eyes, is that I do not subscribe to religious zealotry. I am interested in the concepts of God. And I like the story of Jesus. But I just don’t believe that only one religion is the right one. I think there is plenty of room for diversity and that the most important quality in any belief system is empathy.


1970: Amanda and I have been good pals throughout our lives. It started the day she was born. Since then, we developed a close relationship, calling each other “blood sister” and maintaining a habit of regular “girls’ days out” with movies and pizza. We both looked forward to our outings. Beyond that, we are true friends, confiding and trusting each other and holding each other up. She has my back. I have hers. There is never an ugly word about me that comes out of her mouth. This sets her apart from my other siblings…. Her inherent kindness. Her gentleness.

Amanda Day 21

2013: When my father died, two siblings dragged her through a court battle vying for her guardianship. She had become an asset. I was mortified. I did my best to comfort her and lobbied hard for my brother to win, who was Amanda’s choice. During these months we co-wrote our book, “The North Side of Down.”


Our brother Ted won the guardianship and for awhile, all was well. He took Amanda to live with him in Arizona in 2013, and although I missed her terribly, I had no worries. I did my best to support Ted in his efforts to get Amanda healthy and get along with her.

2014, 2015: When he brought her back to Michigan the following two summers, Amanda went on road trips with Clifford my trick horse and me, helping me out as sound technician as she always had. We resumed our movies and pizza celebrations. We even did a couple of book signings! Amanda is one of the few people with Down syndrome to ever write, or co-write, a book.

2016: Then, the situation changed. This was thanks to the influence of my brother Dan, who was immersed in a dispute with me over property that Dad left to me. Dan was harboring a grudge and decided to put a bug in Ted’s ear. He said that I was no good. That I could not be trusted. And he was not going all the way to Arizona just to pick up Amanda and bring her back to Michigan so that I could hang out with her all summer.

I must add that by this time, our oldest sister Robin, who has an MSW and had disrupted the family by filing for guardianship, had dribbled some poison into Ted’s ear as well. She told Ted that I am not good for Amanda.

When I learned this, I laughed. Robin is the biggest villain in our story.  Of course she is going to be disgruntled. But he gave credit to her opinions as a social worker.

And then there is the second oldest sister, Raechel, who is as toxic as the others, or perhaps more so. She was all to eager to hop on board, as was the third sister, Rebecca.

So Ted had all these people yanking him in one direction, away from me, based on age-old family jealousy and old baggage.

I was not too worried. Ted had been one of my best friends throughout his life. I knew he had my back.

But I was wrong.

He decided to pull the plug on Amanda staying with me, that summer in 2016. He caved in to the pressure and he dishonored my relationship with my blood sister.

He had the added ammunition that the judge who assigned guardianship in 2013 gave me a lecture in the courtroom. She told me that since my life was not in order, I was not a candidate for guardianship.

I had not filed for guardianship. But unbeknownst to me, Amanda had requested me.

I was in bankruptcy. I had lost my farm. It was during the low point in our economy and I had two publishing deals go bad. I badly needed to restore my life to some order, but I elected to take care of Mom, then Dad, then Amanda after their deaths.

So the judge’s lecture was not entirely incorrect, and it was certainly for Amanda’s benefit, explaining why her request was denied. But the one who was influenced was Ted.

And while the judge also said I was Amanda’s best friend, Ted must have missed that part.

The one thing the law does protect, supposedly, is that a ward can worship as he or she chooses. If Amanda wants to call me Blood Sister, she has the legal right to do so. If she wants to worship God one day and Buddha the next, no one can legally order her not to.

As the restrictions began in 2016, I was at first confused, and tried to be polite about it. But they were flinging Bible verses at me and the way they treated me, and spoke of Amanda, was so degrading that before long I could not control my rage. How dare these people interfere with our relationship! How dare they abuse a disabled woman by telling her that her past is meaningless! How dare they shove their religious beliefs down both our throats!


Since then, the infighting over Amanda’s rights has escalated. I continue to grow angrier as other siblings spread vicious lies about why Amanda is being kept away from me. Raechel is the worst. She started trolling readers and art clients of mine, telling them outrageous untruths and then denying it when I confronted her. (BTW, if you comment on this public forum, you are essentially giving her your contact information. Post at your own risk! If you hear from her, please notify me immediately.)

The madder I get, the harder they wrap that noose around Amanda, which only serves to enrage me further. My love for her, and hers for me, is non-negotiable. My rage is akin to one a parent might feel. So, the problem is growing exponentially.

2018: Our oldest brother Jon died shortly after a lung cancer diagnosis. Ted allowed our brother’s memorial service to fall under this head game, virtually yanking Amanda away from me, tormenting her during the service and then making a scene afterward.

It’s bad enough she had to endure the loss of Jon, whom we both adored. But thanks to this pack of vampires, she lost precious hours with me, as well. I had not seen her in two years. We never even had the chance to mourn together.

All because the guardian has to be the big boss.

His actions have insulted me beyond repair. But worse, he has virtually beaten Amanda into submission; a position that does not suit her rollicking self, forcing her to exist in a half-life for the sharp-witted, fun loving person that she is.

Religion can be a sickness. It is used as a weapon in situations like this, wielded as a sword of superiority over those who may not believe the same way.

And with the way they behave, what reasonable person would?

As I have explained numerous times, to everyone involved, that to tear Amanda away from her lifetime’s significant people (and with our parents gone, I am still the most significant) is jeopardizing her health. People with Down syndrome develop deep attachments and to rip them away from their key people can result in dementia.

We just wanted to go to the movies, for God’s sake!

The law is not on Amanda’s side. The government could care less about what happens with her. Her siblings delight in torturing me, and don’t give a damn about the implications to her health.

So, here we are. Ted is a fool. He bought into the propaganda. He continues to allow it to escalate, tossing slabs of raw meat to the frothing, insatiably rabid Bailey crowd.

In many ways, this makes him even worse than they are. They’re lost souls, incapable of empathy. But he once was better than them. Now, he has elected to give in to their hatred. He has exhibited no character, no strength, and no concern for anyone besides himself. He has betrayed Amanda and he has betrayed me. And he has betrayed our parents, who trusted him implicitly with her care, as did I.

Meanwhile, where does this leave Amanda?

As Voltaire said, “Those who can make you believe absurdities, can make you commit atrocities.”



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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