Those of us fortunate enough to know Amanda as she really is, without the Down Syndrome label, without talking over her or putting her in another room to watch cartoons with the kids (an ex-boyfriend’s sister actually did that once), those of us who don’t address her in monosyllables as if she were a dog, or thumb our superiority in other more subtle ways that still ring loud as a bell, those of us who know Amanda understand that she is, first and foremost, a dork.
She could do standup, if she didn’t have stage fright. She is quick on the draw with the one-liners and she courageously leads with her disability like it’s a punch line of valerian steel.
She might not mind that I painted her as a giddy mermaid swimming with a beluga whale. She is an excellent swimmer. For years I have called her my, “Little Beluga.”
I love to make fun of her, but it’s tricky because she doesn’t always appreciate it. Well, who does?
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: