A Little Respect – Blood Sisters, Part 2

Aretha’s death is puncturing the airwaves just as her voice did. The RESPECT song is a hallmark of the #Metoo movement, and we need it now more than ever. It is the handle of a hammer for women. We will include women with disabilities, some of whom are still silenced and smothered in a Handmaid’s Tale-esque fashion hidden from the public eye.

aretha

Aretha, pastel by Nancy

Have you ever attended a memorial service for a beloved sibling, and meanwhile a second treasured family member was also taken from you?

This is what just happened to my sister, Amanda.

She lost two people.

Amanda has Down syndrome.

She made the sad trip with her guardian Ted Bailey, all the way from Arizona to Washington state, to mourn the untimely passing of our oldest brother, Jon.

Cancer took him suddenly. He was diagnosed with a malignant tumor, his first chemo treatment scheduled for Thursday August 2, and on Sunday August 5, he was gone.

After conferring with Jon’s wife Judy, we decided to prepare Amanda with a phone call, and explain to her that Jon was in ICU. I told Amanda it didn’t look good, but we were giving him every chance.

She was horrified, but she took it bravely. She asked me to call her with updates. I promised that I would. I called her the next day with the bad news that we were deciding to remove the tube and let him go.

She immediately started crying, naturally. She began asking me questions about who was present in the room. I was naming names. His wife Judy. His son, Erik.

Just then, I heard her say, “No! Ted! Please! Let me have my moment!”

But because Amanda has no rights, her guardian snatched the phone away from her. “You are upsetting Amanda.”

I’m upsetting Amanda?! I think the situation is upsetting Amanda. In fact, the situation had both of us, and many other people, damned upset. Can you say, “shoot the messenger”?

“Put her back on the phone,” I said. “We are not done talking.”

“Amanda needs to calm down.”

“She doesn’t need to calm down! She can cry if she wants to! And we are talking! She asked you to give her a moment! Our brother is dying and she needs to talk about this!”

Every protest of his was greeted by escalated screaming from me. He finally hung up on me.

This is the type of person Amanda has to put up with, now. He did not raise her. He may be our brother but he did not grow up with her. During all her early years, he was not there.

When our mother was ill, he was not there. The day she died, Ted was not there.

When our father was ill, he was not there. The day he died, Ted was not there.

I was there.

Jon was not Ted’s favorite brother. But he was our favorite.

I promptly told Ted he could take his control issues and shove them in a place that rarely sees daylight. I did not put it quite that politely.

Amanda had one big thing to look forward to, upon arriving in Seattle at this terrible time in her life.

She could do a Girl’s Day Out with us, Judy and me, as we used to do when Jon lived in Michigan. We were the Three Musketeers.

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We would laugh and cry together, reminiscing about those times. We would come away no less sad, but knowing that we had shared in our sadness. We still have each other.

Amanda is 48 years old. She has spent years and years doing Girl’s Days Out with me.

But Amanda was prevented from having this experience, this chance to mourn with her “Blood Sister and Blood Sister In Law”.

Why? Because the guardian was having a tantrum, presumably because I cussed him out over the phone.

He took his crybaby mentality, and he made Amanda pay for it.

People with Down syndrome develop deep attachments. When they are ripped away from loved ones, they are more susceptible to dementia. As it is, about one in four people with Ds end up with Alzheimer’s or some similar illness.

In other words, Ted’s actions are more than upsetting. They are jeopardizing Amanda’s health.

Oh, and as an aside, TED BAILEY should probably do his research on just how far he can overstep his boundaries as (not a human being) guardian. Because the one human right the court will grant Amanda is the right to worship as she chooses. She could be an atheist if she wants to. She can be a Buddhist. She can be pagan. And she can call me, “Blood Sister” until the cows come home. So you not only have no moral right to censor that, you also have no legal right to do so.

As I explained in my prior post, these siblings managed to turn Jon’s memorial into a drama-filled circus show. They yammered on for so long at the podium that they prevented other friends and community members from saying anything. They drove people out of the service. At the end, they made a scene in the parking lot when one sister RAECHEL KOLB assaulted me physically. But the worst part was, despite being asked nicely by both Judy and me, Ted denied Amanda the one thing — THE ONE THING — that would help her the most on this terrible day.

Instead of treating her with dignity and RESPECT, he turned Jon’s memorial into a self-serving effort to further his freak-show, control-riddled, right-wing evangelical agenda.

This is who Amanda gets to answer to, now.

It gets worse.

On Tuesday, our brother DAN BAILEY called Judy at home. He requested a visit with her. Since I am staying at Jon’s house with Judy, he asked that I not be present for the meeting.

I am fine with that. I prefer not to be anywhere near DAN BAILEY, a financial planner who lives in Cadillac. He is angry with me about a dispute over a section of Dad’s Drummond Island property, wherein he is attempting to commandeer a lot that Dad had designated to Amanda and me. The space isn’t fancy, but rife with memories as it includes Clifford’s horse corral, and the trailer Amanda and I have stayed in together, over so many years.

Dan Bailey has a lot of issues. He initiated problems between Ted and me when he took a trip to Arizona to pick up Amanda in 2016. Ted’s wife RUTHIE BAILEY told me I couldn’t keep Amanda at my house unless I paid for the flight to go get her.

It all boils down to money, doesn’t it? The law does not protect Amanda. The way to protect Amanda is to hire an aggressive lawyer.

That summer, I saw Amanda once, for two hours. That was our last visit until Jon’s memorial.

On Tuesday, when I left Jon’s to go sightseeing by myself, Dan sneaked Amanda in to see Judy.

Apparently he lied to Amanda and told her I had already flown back to Michigan.

Dudes, we are not stupid. You are attempting to hurt me. But you are really hurting Amanda. You are committing emotional abuse. And you are an affront to all women.

You should listen to that song as Aretha sang it. I am sure you will be hearing it now. RESPECT….

Because when she got to Jon’s house, Amanda checked for herself. She marched into that spare bedroom and saw my luggage and some of my clothes laid out on the bed.

She came right back out and told Dan, “Nancy’s suitcase is still here.”

You can fool some of the people some of the time, DAN BAILEY. TED BAILEY. But you can’t outwit a smart woman, even if she has Down syndrome.

Amanda knows she is getting screwed.

We see you.

And now the world will see you, too.

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BTW, if you want to read the story Amanda and I wrote together, click this link. We split the royalties 50/50. If we sell enough books, maybe we can afford that lawyer after all.

northsideofdown

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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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