Guardianship: The Truth Takes Courage

My ex husband surprised the heck out of me. We haven’t seen each other in over twelve years and we haven’t spoken. We parted on terms that were not friendly. But today, I received a letter from him about my sister, Amanda.

Amanda has Down syndrome.

For the past six years, since our father died, various siblings have abused her.

And they get away with it.

Part of the reason this happens is because those who know Amanda, and fully know the situation, do not want to get involved. We have relatives who see it happening but they say nothing. Because no one has the stones to call out my siblings, they feel free to have at it.

The other reason is that the law does not acknowledge the type of abuse Amanda suffers, which is an assault on her dignity, separation from loved ones, deception, and other insidious acts.

Amanda’s guardian parades her in front of me at family gatherings, but does not allow us any real quality time together. He helicopters over her, preventing her from making a move without his consent.

The question that always follows these details is, “Why?”

Why Amanda?

Why would anyone treat her this way?

I think with the guardian it began with good intentions. He didn’t know Amanda. He was suddenly thrown into this role with all this responsibility over a disabled person. He didn’t know how smart she was. She was disabled. That was all she knew. His world was turned upside down. I supported him as much as I could. But then I disagreed with one of his decisions, and all hell broke loose. I was insubordinate. He has since found out exactly how insubordinate I am. But he makes Amanda pay for it. He is attempting to beat us into submission using punishment, the old school way for those who don’t know other alternatives to problem-solving — or maybe don’t care. It has become a snowball — the angrier I get, the more he grinds down on Amanda, and the more she suffers, the angrier I get.

I’ve tried reasoning with that one but logic is out the window. He is under the influence of too many mean people.

Our siblings are crazy-makers. I doubt anyone would be able to run this gauntlet of viciousness, deceit, and control without going a little mad.

But Amanda, although shaken by these experiences, marches on.

And she forgives them all.

And still loves them all.

Friends and relatives see this happening to Amanda and they say nothing. Part of the reason they don’t get involved is due to vicious backlash.

One extended family member came forward not long ago and tried to bring some peace to the situation. He was verbally bashed by so many siblings that he backed off.

After all, who needs that?

Amanda misses out on a lot of social opportunities due to the weirdness of the guardianship situation, and the way she is kept in a virtual strait jacket. Relatives who could call her, don’t. They don’t want to deal with it. This included our brother Jon. Amanda missed out on a lot of conversations with him, due to her guardian’s issues.

There are others, too, who stay away for the same reason. I could say it is their loss, but actually it poses a tremendous loss for Amanda. Jon is now gone forever. So I guess the guardian wins?

Considering the circumstances, therefore, I am really impressed by my ex husband’s bravery. He would agree that I never thought of him as particularly brave. Smart, yes. Funny, yes. We shared a pretty long history together — 12 years — before things went south. During those years, as his letter pointed out, he spent a lot of time with Amanda. The two of them bonded.

His letter is an affidavit for me to submit when I file the next petition for Amanda. I won’t go into the ridiculousness of how difficult it is to get a ruling against a guardian, even when you just want to see a movie with the ward, who happens to be your sister!

But it helps, at least in terms of moral support, to have someone who will speak the simple truth.

I had other friends and relatives submit letters to the court in the past, but Bruce’s is especially important because he actually lived with Amanda and me, for days and weeks and months at a time, for over a decade.

He wrote facts the siblings don’t want the court to know. Among other things, he wrote:

  • That I was Amanda’s favorite sibling and she preferred time with me even over those closer to her in age.
  • That while she stayed with us, I put her on a diet and exercise program, and I handled it with care and patience.
  • That I took her to the doctor.
  • That I was instrumental in helping her learn to read and write.

There is so much more. He said that I would be an exceptional guardian, and he pointed out many reasons why.

The thing that makes this most touching is not only that Bruce and I have been estranged for a while, but because he has chosen to maintain relationships with the part of my family that despises me. He is sure to receive some heat for this decision. And he knows full well how bad they are.

This is a great example of one person who has seen a bad situation, and did what he could to change it, and who spoke the truth, consequences be damned, because it is the right thing to do.

I wish everyone had this kind of courage.

“Our lives begin to end the day we become silent about things that matter.” – Martin Luther King, Jr


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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2 Responses to Guardianship: The Truth Takes Courage

  1. Dorothy says:

    Thank you Bruce for doing what is right! Nancy knows knows that I support her 100%.

    Liked by 1 person

  2. Theresa Loomis says:

    Mega-kudos to Bruce. I wish I had inside info that could help this ugly situation. All I know is that you get my vote.

    Liked by 1 person

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