Prior Lake Priorities - On Bullying

I know everyone likes to see nice and sunny, funny stories about my sister Amanda, who despite (or maybe partially due to) having Down syndrome, has an offbeat, self-deprecating sense of humor and a characteristic bluntness.  Her one-liners quickly became a hit when I started publishing them on my FB page.

For instance: Amanda is obsessed with past relationships.  I was married twice; once in a prior lifetime, back in the early eighties.  Even now, all these years later, she still occasionally brings that up -- an ancient history that I would just as soon forget.  Now Amanda and I both are drifting into *gasp* middle age, complete with the side effects of wrinkled brows and curly blonde chin hairs.  But she still loves to ask people about their exes, and to my chagrin, she has extended this inquisition to various men that I've dated.  She queried one guy about his ex wife's appearance and he replied, "She's four feet tall and has a beard and a mustache."

"Oh," Amanda said.  "She looks like me."

Unfortunately, with these light-hearted moments come an occasional darker one.  It's especially sad that for us, the darker ones are usually dealt by family members.  It was my normal MO to ignore other people's bad behavior, and focus on the positive side of life.  But now I am finding that ignoring bad behavior doesn't make it go away.  The book I co-authored with Amanda has raised a number of eyebrows, with or without the chin whiskers. 

The bottom line is, bullies don't like being called out. 

Today the trend on Facebook is all about the video of one Bradley Knudson, from Prior Lake Minnesota, whose daughter is the victim of bullying.  Mr. Knudson is calling them out by name, in a YouTube video now thankfully going viral.  I say, "thankfully" because shedding light on this problem is the best way to solve it.  I applaud him.

People who don't have enough conscience or personal integrity to self-monitor should be stripped of their cloaking devices.  My siblings have threatened Amanda, her guardian and me with lawsuits and who knows what else, because we have exposed their bad behavior in THE NORTH SIDE OF DOWN.  We've even lost one of our five-star Amazon reviews, which our reader apparently deleted after the threats went public.

The funny thing is, in reading these reviews, one sees that they don't focus on the bad behavior of siblings. They focus on Amanda's strength, her inherent wisdom, her bravery.  This tells me that our message is ringing true loud and clear:  Get your affairs in order.  Be kind.  Stay strong.  Follow the love.  No matter who you are, what your disability, age, color, gender, chromosome or DNA, you have a voice.  Don't let anyone force you into silence.

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?

Because Mean People Suck

 

I have a sweet friend who is slipping away.  Even though I haven't seen her in a year's time, I can feel her spirit leaving.  It might be because my consciousness knows she is going, and I am becoming resigned to the idea. 

I met her in 1989.  She is a great lover of animals and a champion of homeless cats, especially.  She is a tremendous patron of the arts.

But she is fragile.  The abuse she was witness to has hit her hard.  She was bombarded with dysfunction in her family and, probably because of her involvement in rescue, she had a high number of encounters with jerks.  Her sadness pervaded and there was always an air of desperation about her; an energy of forced attempt at happiness.

She wanted to die for a long time, but she was resigned to living.  Finally, cancer is having its way with her.  And this is our loss.  The world is losing a tremendous benefactor, a vessel of generosity.

Yesterday I had an unpleasant encounter with an unhappy person who oozes hatred, who puts her energy into twisting words and facts in order to trick people and fool people and cause dissension.  I am faced with the age-old question:  Why are the creeps allowed to stick around, while this beautiful, educated, kind hearted friend's life is cut short when she is barely 60 years old?

Because mean people suck!  They suck the living life blood right out of you.  They suck your energy.  They suck away your happiness and your positive thoughts.  They spread misery because it is all they know.

This is why the kind-hearted often succumb to disease, while the evil people forge onward.

Evil people will kill you.

I learned a valuable lesson from my sister Amanda, who has Down's syndrome, and recently went through a horrific time following the death of our Dad.  In the midst of bad behavior among her relatives, she stayed focused on what was important to her:  Love.  She was somehow able to shed all the abuse and hysteria that was heaped upon her, and concentrate on the thing that mattered most:  Her love for her family.

Now with my friend's demise, I am reminded again how important it is to turn away from the negativity dished out by those who thrive on it.  Concentrate on people who make you laugh, who love you, who are grateful for the time here.  Life is a brief and precious gift.  No matter who someone is, be they blood relative; be it a sibling or a spouse or a parent; no one has the right to steal your life away.  Get rid of the jerks; move on; stay focused on those who are kind, who have empathy, and who know how to love.  It's never too late to learn to truly live.

Coming December 1

Click to order!

My new book, "The North Side of Down" will be available in just a couple of days. This is a bittersweet time for me, as this is my sister Amanda's story, and it involved a lot of heartache for both of us.  Amanda has Down's syndrome and she lost both of her parents within the space of 3 years.  As if that wasn't bad enough, she became enmeshed in a belligerent guardianship dispute between two siblings.

"The North Side of Down" tells how Amanda bore the pain of this era, this life-changing state, as she was hurtled through funerals, fights, being moved from one home to the next, court cases and isolation.  She managed it all without losing her dignity and in fact, came out smiling.

As much as I am horrified by the behavior of our siblings, I marvel at Amanda's elegance.  It's unfortunate that, due to more legal red tape, I was unable to keep her name on the book as my co-author.  But this is her story, heart and soul.  She will still get 50% royalties and I still expect her to attend events and book signings with me.

Our hope is that this story will give others a heads-up to get affairs in order.  You may grow up with someone, but you may not really know them until the chips are down.  At that point, you will find your true hero.

 

Are You a Retard?

Amanda saying, "Hmm..."

Today I would like to address the label, "Retarded."  I have heard this misused twice in the past three days.  In both cases it was applied to my sister Amanda, who has Down's syndrome.  In the first instance, the word was used by a cousin (in-law) in a flustered attempt to define Amanda's "condition." She finally finished with, "Well, there are a lot of names you could call her, but she's a child!"

My response to that was, "There are a lot of names I could call you, too.  But she's an adult."

In the second, the label was used by the producer of the shows my dogs perform in (more accurately now described as, "my ex show producer") in an attempt to hurt my feelings and insult me.  The phrase was, "You're retarded, just like your sister."

My response to that one was, "Thank you."

Ignorance is found in all walks of life and in all professions.  I have experienced the gamut of reactions to Amanda, but the most offensive ones often are from people who I thought would know better. One Michigan library director said, "We have a coupla Down's Syndromes who work in the cafeteria." 

 Uhmmm... A couple of WHAT?  Excuse me?   And you work WHERE?!  I think the title of my next book should be, "I Am Not My Disability!"

I have friends who, when joking around, will say someone is, "retarded," or, "such a retard," and then they catch themselves, look at me and apologize.  The funny thing is, when it is used in this way, it doesn't even bother me.  I have never been hypersensitive about the label, "retarded."

The actual definition for "retarded" is, "Occurring or developing later than desired or expected; delayed."

To me, this would more accurately describe someone with a learning disability.  For instance, I could say that I myself am mathematically retarded.  Ironically, my cousin-in-law is apparently emotionally, certainly socially, and perhaps intellectually retarded.  The show producer is intellectually, emotionally and socially retarded.  And both, in terms of understanding disabilities, are suffering from educational retardation.

Amanda, on the other hand, has an extra chromosome.   She is academically as advanced as her chromosome collection will allow.  She is not "late" or "delayed" at all in her emotional, social and intellectual development.  Therefore, I can state pretty accurately that she is less of a retard than the three of us.

So, before you take offense to the word, "retarded," remember that it does have its applications.  The question is, is it being used correctly?  To muddle it over seems a good idea, because it might save you a knee-jerk reaction.  Or better yet, to use one of Amanda's catch phrases, "Think again!"

 

Hmmm....

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.