The Interview, The Thugs and The North Side of Down

Creativity seems to attract bullies.  Like many other movie buffs, I have watched with interest as Seth Rogan's new film, "The Interview" was yanked from its schedule, caving to apparent non-specific threats from an angry Korean bunch.  One could only feel the pride of patriotism when Sony was verbally spanked for this decision by everyone who mattered, including the likes of George Clooney and President Obama.

In what amounts to either the biggest international scandal ever caused by a film, or the smartest publicity stunt ever concocted, "The Interview" is due to release right on schedule.  But the message is clear:  We don't negotiate with terrorists.

While this scenario was unfolding, a similar situation (on a much smaller scale) was happening in my own life.  However, "The Interview" is a work of fiction.  Our story is all true.  On Thursday, December 18 at 9:14 pm, I received a barrage of text messages from a family member.  "I strongly recommend that you remove, 'The North Side of Down' from public review.... Others will strike back."

They went on to say that Amanda would lose her guardian, and I would lose all assets including any horses, dogs and vehicle, and face potential jail time. 

Amanda and I had anticipated a reaction like this.  After all, our story unfolds within a volatile, belligerent family.  But we had decided that our message was too important to ignore: That people with disabilities need to have a voice.  That it is important for people to get their affairs in order, to make their wishes known in a legal, undisputable way.  That just because someone is a blood relative, they don't need to be in your life.  That no one has the right to take your happiness.  That real love can withstand anything.

She knows I have a lawyer standing by, and that our manuscript was scrutinized with a fine-toothed comb before release.  As my attorney said, "The truth will set you free."

I waited through most of the texts, which went on and on.  Then I replied with, "You had better treat Amanda with nothing but kindness and respect from now on", and, "Please stop contacting me."

After the texts stop coming in, I looked around at my four dogs, sprawled around the room and panting happily, and wondered how in the heck they qualify as "assets."  Have I missed something?

The North Side of Down

 

 

"There are two powers in the world; one is the sword and the other is the pen. There is a great competition and rivalry between the two. There is a third power stronger than both, that of the women."

- Muhammad Ali Jinnah

 

It has been a rough couple of years:  Rougher even than my divorce, or the subsequent foreclosure of my home.  What made the past few so difficult was the loss of my parents, magnetized by the suffering of my poor sister, Amanda.  She has Down's syndrome and became the object of a feud between two siblings vying for guardianship.  Amanda had made her choice, but the entire family was still dragged through an excruciating legal process that lasted for nearly two months, immediately following my Dad's death.

 

During these weeks I devoted nearly all my time attempting to comfort and reassure her.  Though terribly depressed, grieving, confused and scared, she handled the situation with tremendous dignity.  She handled it better than I did.  I was furious.

 

Amanda is in her forties.  She spent her whole life living with my parents in the remote Northern Michigan village.  She was their buffer, their companion, their servant (often unwilling), and their endless source of entertainment.  Amanda is a brilliant wit and, since she is universally underestimated, her snappy one-liners can ambush the innocent bystander.

 

For instance:

 

Me: Did you have a good birthday?
Amanda: Yes.
Me: I would hope so. THREE birthday cakes, jeesh...
Amanda: Yeah. Tomorrow it's back to normal food. Snickers and Milky Way.

One thing Amanda and I have in common is that we both love to write.  During those terrible weeks in 2013, we found solace in sharing our thoughts, and putting words on paper.  Even then, I saw the start of a book happening.  We were living it.  Every day that we were together, we made notes.  Often Amanda would initiate these sessions by saying, "Let's work on our book."

It brought tremendous comfort to both of us.  Now I am finding that most memoirs having to do with Down's syndrome are about babies, written by the parents...  People reeling from the reality of how their life will never be the same, and not in ways they expected.  But Amanda's story is one of later years, and hopefully will serve as a warning to folks about getting their affairs in order.  I hope that this story will spring from the ashes and help someone. 

The manuscript is in the final editing stages now; our story is told.  We are searching for a publisher, but teetering on the brink of indecision, as there are so many self-publishing options available.  Please follow us on Facebook for regular updates.

THE NORTH SIDE OF DOWN will describe, as no other book has, what life is like growing up with someone with Down's syndrome. It will show how sometimes those with the softest voice have the most to say. It will show how appearances can deceive, not only in those who seem simple, but in those who seem the most loyal. It will examine how the legal system can paralyze a disabled person in the wake of the loss of a guardian. Perhaps most importantly, it explains the concept of true forgiveness.