Down Syndrome, and Freedom of Speech — The Truth Isn’t The Truth

Who will be your guardian?

Who will take control when you are deemed unfit to make decisions?

For my sister Amanda, who has Down syndrome, this has already been decided. She is not allowed to mourn for her brother in the way she chooses.


She was not permitted to hear a status update about him on the phone. The guardian took the phone away from her.

She asked for a moment. Her wish was not respected.

She was not permitted to grieve with her brother’s wife Judy, and me. She hadn’t seen Judy in a couple of years. She hadn’t seen me in over two years.

Our siblings set up a stage for drama at our brother’s memorial. Her guardian, and his wife, knew that we were going to ask for a few hours together.

His reason for cutting us off? There wasn’t one. He merely said, “I don’t trust you.”

Don’t trust what?!

Instead of pointing out what this is doing to her, I decided to trot out my resume. “Don’t trust me?!! I raised her. I taught her to tie her shoes. I taught her to read. I walked her to school. She’s my blood sister.”

I was informed that I did not raise her.

“Mom and Dad raised her,” he said.

Really? Were you there? Who took care of her when Dad was working all those hours and Mom was sleeping the day away? It sure as hell wasn’t you!

I was instructed to stop calling her, “Blood sister.”

“We’ve been calling each other that for 40 years!” I said.

“Look up the meaning.”

What arrogance! Why not just say what you mean, instead of telling someone to look it up?

If you look up the meaning, “Blood sister,” means, “Sisters related by blood.”

Which, we are.

This effort to censor us, to accuse us, to smother us, to crush our spirits and drive a wedge and keep us separated, to deny our long history and distort the truth, to say truth is not truth — this is abuse.

It is abusive to Amanda, and it is abusive to me.

People with Down syndrome, or in fact, anyone with an assigned guardian, do not have any rights. There is no freedom of speech.

These siblings did their best to make Jon’s memorial not about Jon. We wanted to grieve for Jon. Ted was not close to Jon. Ruthie did not even know him.

Amanda and I love Jon. We deserved the right to celebrate his life with Judy, his wife, in our own way.

We miss him dearly. We needed that time together.

They took my brother’s memorial service, and they turned it into something ugly. Something about power and spite. Something about hatred.

All because Amanda and I asked for a few hours together.

Don’t sign anything that says, “guardian.”

Don’t ever accept a guardian. They change.

Right-wing evangelicals are cult members. That is all this is. It is not based on anything but hypocrisy. They try to destroy someone’s past, because it doesn’t fit their fucked-up agenda. They think all that matters is the afterlife. Therefore they have no use for moments and hours here, and precious time slips away. They think it is okay to rob Amanda of time with her loved ones.

Amanda has Down syndrome. She is nearly 47 years old. Statistically, she has less than 10 years left to live.

If I see her every two years from now on, that means I may see her only four more times in my life.

Maybe less.

This Ruthie woman, whom I used to love, was standing in the parking lot following Jon’s service, and she called me a, “horrible person.”

Really? This was not YOUR brother.

You never knew him.

Not really.

I’m horrible? Which one of us is abusing my sister?

She is not YOUR sister!

And, she makes Amanda wear ugly church lady clothes.

And a bad wig.

My cool, hip sister, my wisecracking Blood Sister, is now living in a state of full scrutiny. She is subdued, quiet, cautious.

They decided to torment her further by taking her to Judy’s house two days after the service. They tricked me into leaving. They lied to Amanda, telling her I had gone back to Michigan. Amanda went into my room and found my suitcase in there.


How do you think that made her feel?

And, it was an effort to create a rift between Judy and me.

They are very good at stirring up trouble among others.

What harm would there be, in allowing Amanda and Judy and me a few hours to spend just hanging out? Without these hyper-vigilant, insulting people anywhere near us? Even Mom and Dad understood that Amanda needed her own space and gave her the freedom to forge her own relationships.

They weren’t perfect parents. But, they were real, old-fashioned Christians. Not religious zealots.

These siblings are harboring long term grudges toward me. They think they can get to me by punishing Amanda. But it is Amanda who is suffering. They think she is too stupid to know what’s going on.

Or, they just don’t care.

People can change. The person you think you know, may not stay the same once they become your guardian.

Don’t assign a guardian. Find some other alternative. 




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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