Down Syndrome, Guardianship and the Justice System

Down syndrome, formerly called “Mongolian Idiocy” was named for a physician who described the condition in the 1860’s, Dr. John Langdon Down.

He wrote:

The Mongolian type of idiocy occurs in more than ten per cent of the cases which are presented to me. They are always congenital idiots and never result from accidents after uterine life. They are, for the most part instances of degeneracy arising from tuberculosis in the parents. They have considerable power of imitation, even bordering on being mimics. They are humorous and a lively sense of the ridiculous often colours their mimicry. This faculty of imitation can be cultivated to a very great extent and a practical direction given to the results obtained. They are usually able to speak; the speech is thick and indistinct, but may be improved very greatly by a well directed scheme of tongue gymnastics. The co-ordinating faculty is abnormal, but not so defective that it cannot be strengthened. By systemic training, considerable manipulative power may be obtained.

It’s ironic that the guy’s name was “Down”, and perhaps unfortunate that it wasn’t something like, “John Langdon Self-Empowerment” or as Mark Leach pointed out in his 2013 article, “Dr. Awesome.”

john langdon Down.jpg

A person with Down syndrome is certainly the lowest priority in the justice system.

Yesterday was the second hearing allowed me in the attempt to talk to my sister, Amanda. She was being prevented from contacting me through her guardian, our (much) older brother.

For the first time in our lives, Amanda and I went nine months without being allowed to talk!

This was due to a tantrum on the part of her guardian, who was angry because I had the nerve to speak up in protest that he wouldn’t let her visit me in summer 2016 while she was in Michigan for two months.

Because a state of normalcy is just too much to ask.

“I’m the guardian, not you,” he said. “Don’t continue with your old self. Turn over a new leaf.”

After all, I am not one of the Chosen. Not a white gazillionaire with expensive toys and designer clothes and pricey vacations.  Not a rich business owner or trophy wife raising offspring to a life of privilege. Not an avid church member who can rattle off a verse including the source and number. Not a towel-snapping, booze guzzling quipster. Just a struggling artist, visiting schools with an aging horse, choosing my dogs and the woods over family gatherings. (Every time.)

As my ex husband pointed out, I am a nothing. He is an engineer.

But I am Amanda’s blood sister.

Rather than understanding how important this relationship is for Amanda, and prioritizing her needs, he decided to prove a point. After all, Amanda would be just fine without talking to me, right? She doesn’t really “need” to talk to me.


The guardian does not have the perception to see how much suffering he is causing to the stoic individual who lives in his house; who will not, or cannot, tell him how she feels. The guardian does not see the pain, the never-ending cycle of worry he is causing to me or a host of other people in a community who loves Amanda. He merely feeds into the gleeful, self-righteous hatred ignited by a pack of rabid siblings. He is buoyed by their sickness. Hailed as their hero, he either doesn’t understand how he fails miserably in the reality of Amanda, or he simply doesn’t care.

Speaking of idiocy…

And here begins the distortion of what is plainly true, and right, and fair.

First of all, again, Amanda was not present at her own hearing. The judge did not agree to meet with her privately. This time, she wasn’t even in the state of Michigan. I do not understand how a hearing to benefit a person with a disability can be conducted in this manner.

This is the area where the justice system rules: the veiling of facts, the pretend innocence, “who, me?”  The bag of tricks used as a means to an end, rather than upholding what is reality. I believe this is known as gaslighting.

For instance, during the hearing, Amanda’s court appointed attorney asked me, “Did you give Amanda your phone number? Did you write it down for her?”

Since yes or no answers are all that is permitted,  uhm, yes. Of course.

“Did you give her your address?”


So, the point is, if Amanda wanted to contact me, she would. And this is the person who is supposed to be ADVOCATING for her!!

This is the tapdance that will drive an honest person to the farthest reaches of frustration.

We are all advised to attempt to reach agreement with the guardian rather than go to court. And that is sound advice, because the courts will not help a person who has Down syndrome. However, when the guardian refuses to cooperate in a year’s time, then what?

This judge did note that the original order for Amanda’s guardianship included the stipulation that she be allowed to contact family “through phone and internet”. Therefore, he saw no need to amend the guardianship. However, he did not give instructions as to how one is supposed to enforce this stipulation.

I had been blocked from calling Amanda, but the guardian’s attorney told me that I could use the house phone. I asked her for the number. I called the house phone and left a voice mail. Thankfully, Amanda did call me back.

Of course, the helicopter guardian was still hovering around in the background, making sure she didn’t tell me anything they didn’t want me to know. She could not speak freely. I could hear in her voice how stressful that was for her.

And yet, by all accounts, she is just fine. And I did get to talk to her. So what am I complaining about?

And, with the skillful gaslighting technique, the guardian will turn this around and claim that talking to me is stressful for her… Anything rather than admit that he and his wife have done, and continue to do, a terrible wrong.

I am somehow supposed to be grateful for this B.S. and happy that it happened. Well, now I do know she is still alive. I know she has received at least some of my mail, and the gifts I have sent. But she has still sent me furtive messages, asking me not to give up on her.

To know anything about Amanda’s well-being, under these circumstances, is impossible.

This guardian should own up to his mistake. He should admit to wrongdoing on the part of Amanda and me. He should apologize to Amanda, to me, and in fact, everyone who truly cares about her. This will be the first step in healing. Until then, healing is not possible.


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, down syndrome, empathy, guardianship and tagged , , , . Bookmark the permalink.

1 Response to Down Syndrome, Guardianship and the Justice System

  1. Reblogged this on Diary of a Misplaced Yooper: Cliffy's Mom's Blog and commented:

    This post is worth a revisit. I am trying to get help for Amanda.


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