Amanda Portrait – Day 5


It is tempting to paint Amanda as a child, because she was so pretty and photogenic. But it is important to remember that she is not a child. Today, she is shown as a woman. This is how she was a few years ago, in her forties, before she was taken to Arizona.

Amanda is a grownup. She has very strong notions about family and who she likes to spend her time with.

The message from her guardian’s attorney yesterday — saying that Amanda has been cut off because I am “too black and white” — told me that nothing has changed. The issue, to the guardian, is not about Amanda’s well-being. It is about control.

There is some messed-up perception that this is about me. The blurred focus in itself is alarming. This is not about me. This is about honoring Amanda and respecting her relationships. Amanda has lived for over 4 decades making up her own mind about how she relates to family and friends. Why should someone who is virtually an outsider come in and disrupt that?

Amanda deserves to live with dignity.

She expressed a wish to come and visit her sister. She would like to be able to talk to her sister just as she always has.

Amanda should have the right to keep these core relationships.

We need legislation that will allow capable adults like Amanda to make choices. They should have the freedom to define their own leisure time and relationships. Guardians must have their power regulated to a level that ensures that their behavior will be humane, safe and reasonable.

A guardian should never be permitted to completely dominate the ward and all his/her relationships. This type of hyper-control leaves people like Amanda open to all types of physical and emotional abuse. Even a parent is not legally allowed to do this.

Amanda has Down syndrome and is currently being held by her guardian, who is anot allowing us to have contact. On March 27 it will be 8 months since I have spoken with my sister. I am doing a portrait of her every day until I hear from Amanda.

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 “guardian as king” 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 abuse, amanda, down syndrome, empathy, guardianship and tagged , , , , , , , . Bookmark the permalink.

One Response to Amanda Portrait – Day 5

  1. jisun says:

    You know, I haven’t read my blog feed in months and today I went back to it. I’m so sorry it has come to this for you and Amanda. Sending hopes for change. xo


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