Today is important because on this day in 2013, my sister Amanda had to go before a judge and say who she wanted as guardian. Amanda has Down syndrome. At that time, she was in her early forties. Even though I had not filed for guardianship, unbeknownst to me, she asked for me. It followed a bitter dispute between two siblings, the oldest sister and second oldest brother, after our dad died about 7 weeks prior. This date is forever burned into my calendar as the day Amanda was treated, and indeed even told, that she was part of the estate.
That was a good judge. At least she met Amanda in person and gave her a chance to speak.
It is more than the following two have done.
During the weeks prior to that 2013 hearing, the sister Robin was awarded temporary guardianship. She worked long days, leaving Amanda alone at an isolated location in the woods. Amanda had never lived alone. She was racked with grief over our father’s death, scared, and terribly depressed. I would go and pick Amanda up every day and we hung out together. We went to the beach (where she performed her inspired version of the macarena — sorry about the music — YouTube’s choice, not mine). We played with the dogs and took them for walks. We went to the movies. One day, I was late bringing her home for dinner and Robin called the police, telling them I had kidnapped my sister.
The police came to Robin’s house and interviewed Amanda, asking where she had been that day. She explained to the officer that we had gone to the movies, that we had walked down to the Soo Locks, and gone for pizza.
The officer was polite, but the encounter terrified Amanda.
When the police officer called me, he explained that if I took Amanda anywhere again, the temporary guardian could have me arrested.
I was no longer allowed to go and get Amanda during the day. Amanda said Robin told her, “I forbid you to go to the movies!”
Yes, this is true, and it is every bit as ridiculous and abusive as it sounds.
This was my first inkling that something was terribly wrong with the concept of guardianship.
During those weeks, Amanda and I wrote our award-winning book, “The North Side of Down.” The book is about Amanda’s and my experience growing up in a small town in Northern Michigan, what it was like to have Down syndrome, and what it was like when siblings went to war over her.
Now, it is happening to us again! It’s like a rerun of the worst episode in your lifetime series. Because Some People Never Learn just by watching the ugly acts of others — they gotta try it out for themselves. Our current imitator is Ted — Another rabid sibling, coronated as guardian, apparently drunk with power, forbidding Amanda to go to the movies with me!
Since that day in 2013, I have been immersed in vicious battles revolving around Amanda’s best interests. I have been accused of every heinous thing imaginable. I have had death threats. I have had personal belongings stolen. I have been slandered. One sister, Raechel, attacked me at our oldest brother’s funeral as I stood with my arm around Amanda, trying to comfort her, telling Ted we just wanted to go to the movies. Raechel grabbed me and started trying to yank me away from Amanda! She is the one who stalks me on social media and contacts people who support me, telling them horrendous lies.
She wants to make this look like a family dispute. It isn’t. It is a human rights issue.
This is about Amanda. It is not about me.
I don’t want to get too caught up in the crazy. Siblings will try to muddy this up. The fact is actually pretty simple. Amanda is an adult. She has no problem communicating. She has an emotional IQ equal — or probably superior — to any average person. She should not be restricted from seeing her loved ones, whether the guardian likes them or not.
Thousands of people are living in similar guardianship situations — guardians who are given carte blanche and go overboard with control. Some of them are exploiting the ward for money. Others are immersed in family politics. Still others just enjoy the power trip. But nothing can justify this violation of a person’s civil rights.
Even celebrities have experienced this kind of overzealous control by someone who kept them away from friends and family members. They include Peter Falk, Brian Wilson, Tim Conway and Doris Day.
No one should have the right to tell Amanda she cannot see a movie with me. NO ONE.
I have endured all this for Amanda’s sake, because even though she has almost no legal rights, she has the moral right to live as a human being. She should have the right to say who she wants to live with, and where. She should have the right to say who she would like to visit. After all, it is about her life, her personal history, and her relationships.
My relationships with all my other siblings, due to this dispute, are now shattered and will never be the same. And it is just because I disagreed with treating Amanda as part of the estate.
There are those who disapprove of how loud I have been about this. There are people who look down on me. There are those who don’t talk to me anymore. That is their choice. And for every one of them, there are two, or maybe three, or four or five, who silently think I am right. Those who have had the courage to come forward and speak out for Amanda are swiftly beaten into virtual submission by my aggressive siblings.
They try to cover the truth with nastiness… But the truth keeps on eking out around the edges.
I am not afraid to say it.
My priority, first and foremost, is and has been Amanda. Everyone else comes after her. And, this is not going to be a secret. I refuse to protect people who mistreat her. I will not do it. It may not be PC to shine a light on family matters. But this is where awareness starts. And awareness is the only way to make a change.
May our next judge have better eyes and a caring heart.