Thursday, March 28, 2013

It's Not that Complicated, Is It?

The Ethan Saylor case has dominated my mind, my heart, and my Facebook feed for a few weeks now. I have read just about everything news agencies, bloggers, and organizations have published on it.

(Is your Facebook feed saturated with Ethan Saylor posts? Are you sick of it and fairly sure enough other people are acting on this? Well, you can skip this post if ya want to, but please don’t think someone else is standing up in your place.)


And no matter the slant, no matter the details in one post versus another, an unarmed young man died in police custody in a Regal movie theater in Frederick, MD on January 12. His alleged crime was that he refused to leave the theater after a showing of Zero Dark Thirty was over. Three police officers attempted to remove him and one thing led to another (that is my compilation of the various details I have read) and Ethan wound up handcuffed face down on the floor. Shortly after that, he ended up dead.

His autopsy report states there were several contributing factors leading to his death, and ultimately called it a homicide. The case was internally investigated and then a grand jury in Frederick decided that there was no cause to charge the officers involved with any malfeasance or misconduct of any sort.

How is it possible that a 26 year old man can go to a movie and wind up dead, and nothing is responsible for this except the fact that the man himself was defective?

The National Down Syndrome Congress explains much more clearly than I can that this is a human rights issue. When you read their statement, and find out that the man’s mother was on her way to the theater to diffuse the situation, it is enough to break your heart.

Because really... impatience, unnecessary force, and a lack of judgement is what killed Ethan Saylor.

It is true that Ethan was in the wrong when he refused to leave the theater (he wanted to watch the show again). It is true that Ethan Saylor likely got very upset when attempts were made to physically remove him (witnesses say he cried out for his mommy). It is true that sometimes people with Down syndrome are down right stubborn and refuse to move when you tell them to.

ethanIt is also true that if Ethan had been allowed to sit there in the theater and wait for his mom, he would still be alive today... and Regal would be out all of 12 bucks for the seat.

Would that have been special treatment? In my mind every unarmed, out-manned citizen should be treated with patience and the least amount of force possible until all feasible options are exhausted.

If you agree with that, then please consider signing the petition (started two months ago by Ethan’s mom) to request an independent inquiry into the matter.

Raise your hand if you love a police officer (my hand is up). Raise your hand if you think cops put their lives on the line everyday protecting us (my hand is up). Raise your hand if you think all police officers are perfect, that they never misjudge a situation, never make a bad call, and never hurt someone unnecessarily in the course of carrying out their work...

If you put your hand back down, please sign the petition asking the Maryland Attorney General Doug Gansler to open an independent investigation to find out what exactly happened that caused Ethan's death.

Thursday, March 21, 2013

Tuesday, March 19, 2013

Does Your Heart Go Out to Me? Then Act on It

Thursday 3/21 is World Down Syndrome Day. Last year I spent the day at the United Nations in NYC with hundreds of other advocates. We hoped that the Convention on the Rights of Persons with Disabilities would move forward, and that the United States would sign the disabilities treaty. Last December the US Senate chose not to ratify it.

Last October, during Down syndrome awareness month, we wrote posts for an awareness blog hop. You learned, once again, that our kids are as equal and amazing as your kids. But you already knew that because you have seen the videos, pictures, and news articles about people with Down syndrome being... well, being everyday people.

Then this month, Lexi’s "I’m Jealous of You" post got picked up by Mamapedia and Scarymommy and, after reading that post over a few times and digesting the comments, I realized that you don’t really understand that people with Down syndrome (and other neuro differences) are equal to you.

Lexi is an excellent blogger with a ton of great posts, but that post... that moment of personal venting and frustration is the one that got picked up and mainstreamed. Why? Because that post is viewed as the honest truth of mothers of children who are disabled. That post is what the greater public believes is true and thus, it is welcome on the grand stages. The deeper truth, the reasons behind what makes our lives a constant battle, the inequality of our children and how that frustrates and angers us (or makes some of us jealous) is not invited to speak up.

Here are just a few of the responses to the post,
"You are raising a child with an extra chromosome of LOVE. You are beautiful. You are stronger than the rest of us."
"Awww…you deserve a medal. All parents with special-needs kids deserve a medal. Thanks for a great post."
"My heart goes out to you and all the moms of special needs children. Those children are so lucky to have you. We are here for you! xo"

I feel like all of this awareness has opened the door for us but we still don’t have a seat at the counter. We are tirelessly sharing our stories, our pictures, our lives in the hopes that awareness will bring equality. But awareness on its own will not do that.

Awareness elicits various responses:

Affectionate pity — "She is so cute. He is an angel from above. Those kids are so special." (Those kids are different. Those kids are not fully human.)

Renewed gratitude for your own situation — "Wow, thanks for reminding me of how blessed I am" (And how not blessed you are, and how awful it must be to be you.)

Elevating the parents to a status of Other — "You are stronger. You are amazing. You are special." (You are different from me, You are separate from me.)

Share it, off the hook, self back-patting — "I reposted this on my wall so everyone can see that I think you are awesome and kids like yours are so special." (I accept you and pass you on. I’ve given you my support.)

While I believe that all of those responses are initially well intentioned, they do nothing to further the rights of people with disabilities to have full inclusion in society, proper medical care based on need and not congenital diagnosis, full protection by society, and to be seen and treated as a normal part of our culture.

Awareness must lead to action or it is futile.

So this time (and don’t feel like you have to wait for World Down Syndrome Day or Down Syndrome Awareness Month) I ask you to act on what you now know, what you are aware of. The next time you are in your child’s classroom, look around. Do you see any children with Down syndrome or other neuro or physical differences there? No? Ask the teacher, ask the principal, "Where are they? Why are they not with my kids?" Tell them that you believe in the equality of all people, and the rights of children like mine to be educated in regular classrooms alongside their peers (your children).

Thursday, March 14, 2013

Hooray! It’s Juicy Juicy Day.

Forget celebrating math because it's Pi day, today is also Juicy Juicy Day. If you are not up on your holidays, and you want to see what every guy would like to get on JJ Day, check this out.

Sadly, my husband will not be getting that. It is just too dang cold to be outside grilling steak, and I have been having a not-so-secret affair with the dentist (three visits in two weeks) so he will be getting buffalo blue chicken dip with Tostito Scoops and the hand for dessert.

Since I am already on the subject of sex, let me ask you... is anybody who is married with kids getting enough?

I know we aren’t. I try really hard to remember when we were and sure enough there are no kids anywhere around those memories. Ever since the oldest grew up enough to notice, um, stuff, we had to start being careful. No more craziness on the couch, the kitchen table, the lawn...

And then one day I realized that we are never alone. And somehow our kids just know when something might be up. Doesn’t matter if we try to hide in our room and lock the door... they will bang on it. They know. It must be some strange survival instinct that protects them from acquiring more siblings... I swear it even wakes them up at night.

In the old days, a moment of flirtation might lead to having to pull off on a side road, but now the only reasons we stop are to let someone out to pee, or to change a diaper. There is just no spontaneity anymore. Not even late at night when I am sure, really sure they are all asleep because by then, I am too.

Recently I went to visit my gyno who I have not bothered with since Kimani was born, and I whined to her that I need something, a magic pill, to fix this. Blah, blah blah... no fix, totally normal... WHAT?! Not what I (and surely not what my husband) wanted to hear. She suggested that maybe I should set the alarm for 5 a.m. and slip in some early action. I can barely drag my butt out of bed at 6:30 a.m. to get five kids ready for school... You think I am getting up at 5 for sex?

If not for the seven (mostly) childless weeks we spent in Ukraine two years ago, I would think maybe that wild girl I used to know (who once did it on a barstool in a packed club, remember that one, honey?) was dead. But, there in Ukraine I learned there is hope. It would seem that when there are no children around, and endless hours of alone time... we are still us, and still hot, and still up for it. (And see, my kids were right... when mommy and daddy were left alone for too long, two more siblings arrived.)


Ok, so that said, tell me... how are you going to hide from your kids today in order to celebrate Juicy Juicy Day?

Tuesday, March 5, 2013

You Made Your Bed

A blogging mom I know who produced an abundance of children wrote a post the other day about how hard motherhood can be, in fact she said it feels like a thankless job. She was truly venting, showing an honest and vulnerable parenting moment, and for the most part she got a ton of comments from women, including me, who were all very much like, "Yeah, I hear you."

lmfamilyBut she also got the comment about how she basically is doing motherhood wrong and if she could only learn to do it right, she would find that her now well-behaved children make her feel like motherhood is a "thankful" job, although really, that is not the opposite of thankless in this context, but hey... when you are preaching there is no need to check your semantics.

Anyway, this blogger really puts herself out there and over the years I have noticed that she gets a lot of "You made your bed now lie in it, and don’t bitch about it" crap. And I have been thinking about that because I made a bed too, and I would love to share the reality, the struggles of living with all my choices but I really don’t want to listen to all that self-righteous baloney from readers in glass houses.

Because all of us live in glass houses. I don’t care who you are or how much you Fakebook, there are truths in your life that are just as tough as the ones in mine, or Lisa’s. And furthermore, many people who "make their bed" give up and get out of it... for example, half of all marriages end in divorce.

Life is filled with choices that have both positive and negative consequences. So why is it only ok to talk about the positive ones?

There is a loss of integrity in our own lives when we are unwilling to let people talk about the difficulties that came with their choices, when we condemn and attempt to silence them with our judgements.