Amanda Portrait Day 11 – Watercolor Baby – “I’m the Guardian and You’re Not”


Among Amanda’s first words were, “Who’s that?” This was abbreviated into one word. “Whozat?”

When she was about two years old, this was her way of asking to meet someone. She would point at them and say, “Whozat?”

The variation of this was, “What’s that?” which became, “Whazzat?”

She wasn’t afraid to ask, and we always answered her. She was introduced to everyone in a very social atmosphere — a houseful of noisy kids coming and going, big picnics with Grandpa and Grandma Bailey and a host of relatives on Drummond Island, road trips to the Soo and riding on the ferry boat. I was always there to help her with pronunciation.

I am sure that this busy interaction is what makes her so adept socially now. She speaks clearly and has incredible retention when it comes to names and who’s who. She has introduced me to a virtual hoarde of cousins, correctly explaining how they are related to us and who their kids are. She also knows most of their birthdays.

It boggles my mind that someone this intelligent, who has had this measure of respect throughout her life, is now not even acknowledged as capable of making her own choices. Amanda has been labeled, “Handicapped.”

Amanda has Down syndrome and is currently being held by her guardian, who is not 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.

“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!
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