Amanda Portrait Day 16 – Down Syndrome in Black and White


Once in awhile Amanda and I like to hang out at the DeTour Harbor. We walk out on the dock and watch the freighters go by. Mostly, Amanda likes to pose for pictures.

I have a lot of memories of the harbor, including a few of the very best ones — like the day Amanda and I shouted out our ages to the Saint Mary’s River, because it was her birthday. Or the day we looked toward the setting sun and saw an osprey crash down right before us and snatch a fish out of the shallows, flying off with drops showering down like glittering confetti. The air is cold and clean there, and Amanda is rosy-cheeked and happy.


Today I chose a quick pencil study to portray Amanda. A couple of weeks ago a mediator contacted her guardian’s lawyer on my behalf. She said that I have been restricted from talking to Amanda for 8 months because, “I see things too much in black and white.”

This is a perfect example of the psychotic thinking involved in guardianship — a dysfunction that likes to stir things up, place blame, keep the drama rolling. My sister wanted to come and stay with me for a few days. Plain and simple. My sister would like to talk to me on the phone once a week or every few days or whenever she wants to. Again, very simple. No punishments, no restrictions, no weird control issues or agenda. If that is black and white, you bet. I am happy to claim it.

This is what happens when there is no reason for the abusive behavior. They make up a reason — they say words that mean nothing.  Anything to justify what amounts to needless cruelty, toward a person who has no choices.

I know there are many others who are suffering with similar circumstances. For the most part, the public doesn’t care. Our extended family has been surprisingly apathetic. No one seems to be questioning the guardian’s unreasonable overreach of authority.

No one, that is, except for me.

But this is going to change.

A friend today directed me to a website featuring a book that addresses this issue. The book is called, “Fugitive from Injustice” by Danny Tate. He signed himself in to rehab, entrusting power of attorney to his brother. Danny Tate got taken for the ride of his life. To his astonishment, he learned the thing that others among us know: The law does not help a ward.

The article reads:

“The public is generally disinterested or dismissive of probate abuse – at least until it happens to them. Disinterest manifests with a common position that “these things can’t happen” while the dismissive stance usually includes “you must have done something to deserve it.” Besides being patently wrong on both counts, these mindsets are also dangerously naïve.

Disgruntled family members, wannabe heirs and/or unscrupulous attorneys abundantly populate our society. These parties in concert with assorted members of the legal industry (judges and other court-related personnel) can functionally weaponize the court system to the total detriment of an unsuspecting target.

Financial professionals from CPAs to banks sometimes play a role. Conservatorship abuse cases from across the country surface routinely reveal Adult Protective Services (APS) employees, professional guardians, social workers as well as medical personnel responsible for evaluations (physical and psychological) and even proprietors of facilities that house incapacitated or disabled individuals involving themselves in questionably motivated cases. Call it asset looting, property poaching or estate hijacking – any of these parties can (and too often do) derive direct or indirect benefit from abusive probate actions.”

The irony, of course, is that we aren’t rich. My folks had a little bit of Drummond Island property and that’s it. Amanda’s SSI was a big deal, apparently. But it’s crazy how desperate people become. All humanity disappears in the lust for power and greed. So stupid.

Amanda has Down syndrome and is currently being held by her guardian, who is not allowing us to have contact. On March 27 it was 8 months since I have spoken with my sister. I am doing a portrait of her every day until I hear from Amanda.

“I’m the guardian and you’re not.” That’s the reason her guardian gave when he refused Amanda’s request to visit me in summer 2016.

A few warning signals of guardianship abuse:

1. The guardian and/or conservator treats you as an outsider instead of a relative, friend, or loved one.

2. The guardian/conservator sees to it that your loved one doesn’t have a phone.

3. When you visit, the guardian “hovers” or even employs someone to hover so you’re not alone with your loved one.

4. You are denied input about your loved one’s care – the doctor won’t talk to you – you are shut out.

5. The guardian/conservator refuses to take your call or answer your questions.

6. Your loved one doesn’t get his/her mail.

7. If your loved one is in a nursing home, you’re only allowed to visit in the dining room or recreation room.

8. You start seeing questionable documents and realize financial accounts are closed or changed and the statements have been diverted to the guardian/conservator.

9. You discover the taxes haven’t been paid — or even filed.

10. The nursing facility tells you when you visit, you “upset” your family member or upset the staff.

11. Items are missing from your loved one’s home.

12. Your loved one appears to be more sluggish, perhaps even dazed.

The days of guardians running the show are coming to an end. There is help available.  Click the link below:



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 amanda, empathy and tagged , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s