Precedent, Not President

The election of Donald Trump has shaken a large (perhaps the majority – since more people actually voted for Hillary Clinton) part of the population.

One faction affects me personally — Hillary had promised to be a champion for people with disabilities. (Trump makes fun of them.)

I watched the voting numbers, while my hopes of talking to my sister Amanda, who has Down syndrome and is basically being held hostage by her guardian, sank into the sea of despair.

(Full Definition of hostage. 1 a : a person held by one party in a conflict as a pledge pending the fulfillment of an agreement b : a person taken by force to secure the taker’s demands. 2 : one that is involuntarily controlled by an outside influence.)

I admit I joined a legion of folks who spent part of Wednesday in tears.

I recently watched an interview with Vice President Joe Biden who said that in the 60’s, when he began public service, civil rights issues were dividing families.

“People didn’t speak to each other,” he said.

I think he was referring to racial division – but today we are immersed in the same thing on a different front. My own family is divided over what boils down to a civil rights issue: The First Amendment rights of a person with a disability.

It’s been a rude awakening for me. I thought, since Amanda is a vulnerable person, she would always be protected and honored by family members – or at least, some of them.


Were her family to fail her, the justice system surely wouldn’t.

I was wrong on both counts.

I have heard only snippets of how common this is, but as I peel back the cover more and more, I am bearing witness to a social epidemic.

Disability is acknowledged as the “bottom rung” of the minorities in America. But I will take it one step further and say that people with disabilities are prioritized even less than animals. I have long been an advocate for animal welfare, and I have no problem rousting a host of righteous indignation on behalf of an animal who even appears to be getting the shaft.

Just as example – I was able to get a national organization to adopt a mare simply because she was running away from home and showing up at my barn every day. She wasn’t being abused, per se. At least, not that I know of. She had food, water and shelter at her home. She just didn’t want to live there.

That mare had more freedom of choice than my sister does.

Despite having spent a decade working in service to the Drummond Island community, and then time working at Goodwill in Sault Ste Marie, having devoted painstaking hours to co-authoring an award-winning book. (The North Side of Down – ironically, the story of how Amanda had to fight for her First Amendment rights!)

North with BRAG

Amanda is forbidden to make a choice as simple as where to spend her Saturday.

I have reached out to various organizations and advocates. I wrote to the US Department of Justice, and received a reply letting me know that they were too swamped with other complaints to help me. (!)

Isn’t this a sign that something is terribly wrong?

I researched and drafted a bill for congress, proposing limited guardianship for adults with disabilities, based on a psychological evaluation of the ward. My letter admitted that federal regulation might be tricky, as the needs of the ward, en masse, can be difficult to quantify. I came up for a solution to that. I suggested a system based upon their individual levels of cognition. It was actually pretty simple, offering more freedom to disabled individuals, and would have even created more jobs.

My goal was to spoon-feed congress with a proposal that would be easy to digest and implement. It would be similar to the rights of a minor child in a custody battle.

I received a letter from Congressman Tim Walberg’s office on August 18th.

“We were unable to find any federal laws that would govern this matter.  It is difficult to quantify the needs of each individual with disabilities, which is why the terms of guardianship would be determined by a court.   Please know any issue of abuse should be reported to authorities and would be governed by state and federal laws.”

Uhmmm…. Isn’t the whole point to CREATE federal legislation, hello?

They even used my own verbiage against me, saying the needs of disabled adults were, “difficult to quantify.”

One of the hardest parts about this has been explaining to all the people who love Amanda and are used to seeing us together. They ask, “How’s Amanda?”


I have to tell them, “I don’t know. I’m not allowed to talk to her anymore.”


The question is inevitable. “Why not?”

“I don’t know.”

Further questioning follows. Well, can’t I do something? How is this possible?

I am as confused by it as they are. I don’t know why her guardian is doing this. It was an evil surprise because I never thought him capable of deeds this despicable.

There is no real, valid explanation. It started with a phone call from Amanda, back in March 2016, telling me she was coming to Michigan and wanted to stay with me for part of that time. This seems like a no-brainer, but I had a few warning bells because the way she delivered the news was as if it were a secret. There was something weird about it. No one else had mentioned her visit.

Then came a squabble with her guardian’s wife, who told me I couldn’t have a visit if I didn’t have the money to fly to Arizona and get her. Naturally, my reaction to this was not pleasant. “So Amanda is for rent?!”

Then, Amanda sent me a letter asking me not to give up on her.


The guardian blocked our plans, claiming that Amanda has bad habits, and had an attorney (another of my “winner” relatives) send me a drama-riddled email, accusing me of intent to kidnap her (due to that time I took her to the movies), and inviting me to petition the court.

So I did.

It seemed a simple request on Amanda’s part. I had proof that she wanted to come and stay. Who would possibly deny this?

I had an ugly realization that the court system does not give a damn about what Amanda wants. Her attorney didn’t speak to her. The judge didn’t speak to her. She wasn’t even present at the hearing to express her wish.

Amanda lost.

After the hearing, because I hadn’t immediately submitted to the bullying, the blame switched to me. I might influence Amanda somehow, to do something evil. Then, if I didn’t start to “cooperate”, I would be cut off.

Cooperate with what?

The more I insisted on letting Amanda choose, the more belligerent and controlling the guardian become. Other siblings joined in. The accusations grew more vicious with every exchange. I might kill her or abuse her or kidnap her. And I might be a drunk, or on drugs!

So, the next story was that I was somehow bad for Amanda.

According to whom?

Professionals said so.

What professionals?  Our MSW sister mentioned in our book, who threatened to send Amanda to a foster home?

Yeah… No conflict of interest there!

A pretty good rule of thumb is, if you don’t want to go down in history as a jerk, don’t be one.

In July, because I kept bugging them, I was offered to take Amanda to the movies, as long as the brother was there to “supervise”.

“I will be there,” he said. “With Amanda -”

“In handcuffs?” I said.

“Yes. She’ll be handcuffed to me. Because I don’t trust you,” he said.

Again, with the kidnapping. This was after he forced Amanda to listen to him scream at me over speaker phone for about 30 minutes. “You are an idiot!” he shouted.

Suddenly, I heard her voice in the background.

“Is Amanda listening to all this?”

“Yes!” she shouted. “I’m here!”

“I’m sorry, Manda,” I said. “This is not your fault.”

She replied, but her answer was drowned out with more screaming.

So we want to go out in public with him?

Nope. No movie. Not with you, dude.

What message does that send Amanda? That she is a …..What? And I am a ……..What?

I don’t negotiate with bullies.

“I can’t believe you would cancel her!” he screamed. “How could you do that?”

“I’m not canceling her. I’m canceling YOU.”

So I had to break that news to her, and postpone the movie. But, true to her nature, she remained understanding and hopeful. She said she would ask the guardian, during the few days he would be in Michigan to pick her up.

That was the last phone conversation we had.

But I kept calling, and calling. I wanted to talk to the guardian. I wanted to fix this, go over the brother’s head, so Amanda and I could have quality time together at last.

And, because I wouldn’t just go away, then came the death threats.

The Michigan brother threatened my life. “I’ll put a bullet between your eyes!”

The police took the report, but the PPO didn’t pass, because hey, in the 3 hours it takes him to drive here, he might change his mind.

Apparently, Amanda’s request for a movie was turned down by the guardian. He never returned my calls. She was flown back to Arizona without getting her Girl’s Day Out.

I can only imagine how she felt, forced to get on that plane.

All this just because she had the nerve to expect to visit me!

It would be laughable if it weren’t so ugly.

It boils down to hostile B.S. The real reason is that there is no reason. And it doesn’t fool anyone… Especially those who know Amanda and me.

Friends’ immediate reaction is that the guardian is hiding something, afraid that Amanda will tell me if she gets a chance to speak to me candidly again.

It would not be the first time this has happened. Amanda stayed with a sister and was instructed by her to tell no one what took place there. She followed the instructions until she got me on the phone. Then, the whole sordid story came out. She wasn’t fed. She dropped 17 lbs in a couple of weeks. She was cornered and screamed at.

I had to help her break the news to the guardian about that situation. She felt she couldn’t talk to him.

Amanda tells me everything. She has now been robbed of her most trusted confidante (me). For whose protection?

One of the most difficult things has been explaining it to a friend who has a disability. She has been a dear friend of ours for many years. She asks me time and again. How’s Amanda?

I am honest with her.  “I don’t know.”

I explain it nearly every day. I always am patient, replying as if it is the first time I am asked. Who is doing this? Why?

There is never a reason.

She summed it up one day. “That’s some brother.”


Amanda and me at DeTour Harbor

Amanda is loved by the masses. Her extended family goes beyond what any of us know. It is exactly the same as any other person – she should be in charge of her own relationships. She is smart enough to know who her friends are. She is not a possession, a tool to be used in a game of spite, or a house pet.

She is not yours, to use.

No one should be treated this way. NO ONE.

Shame on the judge and the attorneys and all the powers that be, who are not stepping up to bat for Amanda. It would take very little effort to set this right. What are you all so afraid of?

And Donald Trump is not going to help us! He appeals to these entitled white males, who have ushered in this hierarchy, alienating the misfits and oddballs; the disabled, the middle class, the artists and other losers.

One strike against me has been my gender. I have never seen this more obvious than now. I’ve been called every name in the book. Were I a man, especially a rich man, this would have played out much differently. I would have been treated with fairness and objectivity. I would have had a say in the matter. So I guess it is a civil rights issue as pertains to me, as well.

And I am just not going to play along anymore.

I admit it is hard to become the scapegoat in a group. Nobody wants to be ostracized, and it’s the way of a clan to gang up.

Do it anyway.

It’s important to stay focused on the person who is vulnerable, who is given no choices.


If I can step up to this plate of steaming bull dung, and keep swinging at the crap they are firing at me, so can you.

You are needed. The only way we can put an end to discrimination is to speak out.

If speaking out risks pissing people off, do it anyway.

You will lose relationships. Some of them you may consider precious. It’s important to keep in mind that those who would alienate you for defending someone weaker, have issues of their own, and best be left behind to sort them out.

It might feel like you are standing all alone.

But you are not alone. You are standing before the one person who has no choices. THAT is your family. Furthermore, you are defending a host of others who are voiceless. You will have to be stronger than you have ever imagined. You cannot know the effect you will have. But one thing is certain – change will never happen without you.

Trump has four years to do his thing.

For us, there is no time limit.

This is my battle. You have one, too. Don’t despair! Just stay focused on your goal.

Each and every one of us matters.


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, disabilities, disability, down syndrome, down's, down's syndrome, dysfunctional, empathy, families, family and tagged , , , , . Bookmark the permalink.

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