Inauguration and Feathers of Down Syndrome

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Original slate painting by Nancy J Bailey

As Inauguration Day circles above us, riding the air currents like a predator, many have been dreading the last hours of our dear President Obama’s administration. His eloquence, grace and humor will certainly leave a tremendous void.

But this inauguration will mark the greatest uprising among women that our country has ever seen, perhaps even surpassing the days of suffrage. Now, more than ever, we will be heard.

On January 27 it will be six months since I have spoken to my sister Amanda. This will be the longest period of time, throughout our entire lives, that we have gone without talking; without sharing jokes and secrets, and speaking about our days.

Amanda is held under lock and key by our brother in Arizona who is not allowing her to contact me, even though she desperately wants to.

Amanda has Down syndrome.

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A sketch I did of Amanda when she was about eight years old. She signed it for me.

Unfortunately, her disability is license for her guardian to abuse her, while the rest of us have no legal recourse.

And yes, this is abuse. To restrict Amanda from contacting her loved ones is as bad as slapping her around. I am certain he is leaving scars. They may not be the visible kind.

Over the years I have watched as the domino effect of hatred and lies toppled one family relationship after another.

I never knew the actual cause. I have notions, but always conclude that there is no reason, beyond that it is human nature to gang up.

Historically, Amanda and I are the two hens in the coop that mince around the edges, picking at the corn that falls outside the mobbing cluster of ruffled feathers. The squawking, shrieking flock are jostling for a place, competing for the largest portion. What motivates a group of bantams to single out one or two from the group, hammering at their backs and tearing out their feathers?

For the most part, we didn’t care. Amanda had her own stuff, and I had mine. We kept out of the noisy clutch most of the time. We spent a lot of it hanging out together, as we both appreciated peace and quiet and we liked to write.

However, after her visit to Michigan last summer, Amanda no longer has control over her own activities. The final domino to fall was her guardian.

Although the last two are my brothers, whom I have always gotten along with, neither of them has made any effort to mend the rift, even for Amanda’s sake. I sent emails, called, trying to reach an agreement and keep the line of conversation open.

I got nothing.

They lost interest in me several years ago when I drained my life savings, pulling the plug from the financial planner’s agenda for my future in money. They don’t need me anymore.  Amanda does, but that is beside the point.

Any normal person, one with empathy, would have by now made some attempt to find a common ground.

Empathy is the key. They will not acknowledge that what they are doing may be deeply harmful to Amanda. They don’t want to think about that. They have a point to make: Control. They are running things. They are managing this. Amanda and I, by expressing our own desires and opinions, didn’t play the game right. We didn’t “cooperate” by being good little girls and going along with everything, submitting to the male sovereignty. We actually spoke our minds. We asked – nicely – to have our time together, undisturbed. After asking nicely, and getting spurred until we bled, I stopped being so nice. Now Amanda and I are paying for it.

I would have heard from a normal brother by now. Anyone who cared about Amanda would have gotten in touch with me, to explain why the door was slammed shut, and to attempt to repair the damage they had caused.

Any empathetic person would understand that Amanda runs deep and she is not showing the agony they are putting her through.

Not these people. They have nothing to offer other than their scorn. Amanda and I are misfits. In their eyes, she is too stupid to understand anything. Just feed her, and keep her occupied, and she’ll forget all about the misogyny and the violation of her human rights. Duh. Projection. They think she is as self-involved as they are.

This is the slide ruler that Amanda and I are measured by.  Wealth. Power. Status. Greed. Cars and liquor and 401Ks. Boats and trailers. Property. And let’s not forget Church.

Not people. Not the hopes of deceased parents. Not the importance of a matinee on Tuesday, where there must be popcorn and a seat by the bars so you can put your feet up. Not dogs and horses and the way the birds murmur when the wind dies down. Not shouting your age from the top of a hill until your voice cracks.

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Amanda and me and our friend Janny – Girl’s Day Out!

But what tops this list of failures is that we are, first of all, the wrong gender. Being female, we are automatically a lower life form. Women are supposed to make babies. Hell, even our sisters think so. Amanda and I are the only two people in the family who have not borne children. That somehow depreciates our worth as humans.

This is not including the stuff that they have made up about me – lie, after lie, after lie. Allegations of drug use, of alcoholism, of abusing Amanda, of skipping out on hotel bills without paying. Of getting Amanda drunk, and kidnapping her. That I have set out to skewer all the pretty little chicks. That I alone have somehow broken the family unit, instead of simply narrating its brokenness.

North with BRAG

They think they are offended by a book, and some blog posts?! The mess of lies and attacks on Amanda and me grows and becomes so convoluted that perhaps it is too embarrassing to come out and admit they have been wrong. WAY wrong.

Who would want to confess to such actions? If the mirror gets too ugly, you stop looking, right?

It takes a real man to face that walk of shame.

Yeah. Easier just to pile it all on me. But when the smoke clears, I will still be standing. Amanda might not. In the end, she is the one who will bear the brunt of their illness. Why take that chance? Is their own comfort worth the risk of her well-being?

Cowards.

So they remain in the chicken coop, preening cocks strutting about in a world of their own making; in a universe fenced off from reality.

The world is changing. People with disabilities are not patronized in this day and age. They are held up to higher expectations; to greater love. They are starting to be cool. They have their own friends. They hold jobs. We don’t even call them “handicapped” anymore.

That rooster isn’t running fast enough.

A real caregiver looks after his flock. A real brother would have been man enough to see past his own issues and protect Amanda; not smother her under a suffocating pile of low expectations and demeaning comments (“Amanda is not intelligent”) and self-aggrandization. (“I am the guardian, not you. So I decide what happens with her, not you.”)  A caregiver would do his job by listening to what Amanda has to say, and paying attention to the truth.

A responsible guardian would be reaching out to me… If not for my sake, then at least because I matter to Amanda.

A real human being would be saying, “What can I do for you? What do you need for us to fix this? How can I help?”

Is there an egg somewhere in that stinking pile of bird shit?

I’m still waiting.

Prove me wrong.

So far, I am not impressed with how the good ol’ USA legal system has handled Amanda’s situation, which has been to look the other way. Amanda’s court appointed attorney didn’t talk to her. The judge didn’t talk to her. The new Arizona lawyer didn’t ask her about family because he “didn’t want to go down that road.” What if she were being physically battered? How would we find out? She told me about abuse at the hands of our sister last year. But she can’t tell me anything now. No one will help her. Gandhi wrote: “The true measure of any society can be found in how it treats its most vulnerable members.”

So far, this society hasn’t given me any indication that they give a damn about Amanda.

Inauguration day will dawn and women will work even harder to be heard. This is only the beginning. We will not be silenced.

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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, amanda, down syndrome, empathy, guardianship and tagged , , , , , , , , , . Bookmark the permalink.

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