But She’s Got Down Syndrome, Right?

I just got off the phone with a lawyer in Arizona. We talked at length about Amanda’s case. I explained that Amanda has Down syndrome and she wants to move back to Michigan and live with me. I told him her current guardian is not even allowing us a real visit.

He was not very encouraging about me filing my own petition for visitation or to amend the guardianship. I had explained that all the siblings were against me. He asked why, and I said they were angry about the book Amanda and I had written.

His advice was for me to hire an attorney. He quoted me a figure of at least $10,000. This is without the travel. So the first couple of quotes I received were in the ballpark.

He said a better option would be to talk to Amanda’s guardian, Ted and convince him I am not this terrible person Robin has made me out to be. Appeal to his humanity. 

I said, “He KNOWS very well that I am not a terrible person. I last saw him at our brother’s funeral. Even then he was sticking it to Amanda. He’s got a point to make. He is in control. He’s having a tantrum at Amanda’s expense. How do you reason with that?!”

He didn’t have an answer for that one.

I said, “All I need is one judge who will agree to talk to Amanda and hear her out.”

He said, “But she’s got Down syndrome, right?”

So with that simple question, he summed up the whole problem. Amanda is not limited by her own abilities. Amanda is limited by a stigma.

It seems the best option for Amanda and me is to raise a pile of money. I don’t know how. I think it is a travesty that the system allows this to happen. What about all the family members who do not have the resources to fight for their loved ones? How many others have suffered the way Amanda is suffering?

Unfortunately people with disabilities just don’t pack the emotional wallop that other causes do. If I were raising money to save a dog, do you think I would have $20,000 by now? How about if I were raising money to help a mainstream, white child who was separated from family?

Oh, wait. The law would protect the dog and the minor child. 

But with guardianship, this type of abuse is not considered criminal. So this 48 year old woman, this published award-winning author, this compassionate person, this raging wit, is stuck in a place she doesn’t want to be, with people she doesn’t want to live with.

…But she’s got Down syndrome, right?


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, down syndrome, down's, down's syndrome, guardianship, The North Side of Down and tagged , , , , , , . Bookmark the permalink.

Leave a Reply

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

WordPress.com Logo

You are commenting using your WordPress.com 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