Try the Ethan Experiment

Have you ever watched some crazy show where they do dangerous things and preface them with, "Don’t try this at home"? Well, this time I invite you to try this experiment yourself (but don’t blame me, sue me, or recommend training to me if you get hurt, ok?)

If you knew and loved Ethan Saylor, please don’t read this post. I hope to stir the human imagination, and you don’t need to go there.

If you already signed a petition asking the Maryland Attorney General for an independent investigation in the Ethan Saylor case and if you are pretty well convinced that specialized Down syndrome police training is not the answer to the problem here, then you, too, can skip the experiment.

Now for those who are left and feeling brave...

Step 1: Find three guys who weigh about 150 to 200 pounds each and ask them to join you on a trip to your local Regal theater.

Step 2: Once inside the theater ask your companions to tie your hands behind your back.

Step 3: Walk up onto one of the stair risers and ask your companions to get behind you.

Step 4: Tell your companions to push you over face first and fall on top of you on the stairs.

Imagine that. You are falling face first and you can’t put your arms out in front of you to brace yourself. You land hard (that is a LOT of weight on you) with your face, neck, chest smashing down into those stairs. How far apart are the edges of each step...? Not far enough that your whole face and throat miss the 90 degree angle of stair edge I’ll bet.

So counting your free-falling weight and that of your three companions you will have roughly about 500 pounds of pressure slamming your... you pick.... your eyes and nasal bridge? your nose and upper lip? your mouth and chin? your unprotected throat? into a stair edge.

Ahh, how do you feel? Be honest, this is important. What? I can’t hear you? Oh, gosh that’s right... I forgot to mention that when you hit that hard, the air in your lungs is forcefully expelled and in that position with your hands behind your back, you can’t breath any air back in. That is probably why you are having a hard time telling me how freaking bad you are hurt.

Here, let’s flip you over. Better? Huh, I still can’t hear you. Perhaps your larynx got crushed in the fall and no amount of CPR will fix that. I'll hurry up and call 911 and we can hope they get a breathing tube in past that mess you have there because I really really do want to hear how you think the experiment is going.

I don’t have Down syndrome but I also don’t have the guts to try the Ethan Experiment. It killed him, and it quite possibly would kill me too.

Stop trying to convince yourself that special training for mall cops and police officers changes the results of excessive force. No one should have to endure the Ethan Experiment over a stinking $12 movie ticket.

Don’t start telling me how it was his fault because he would not leave the theater. It was his fault for not complying, and that if the officers had actually de-escalated the situation that would have been special treatment. Because seriously, I have a drunk and disorderly post for you all about what special treatment looks like.

Don’t start telling me about the risks of being fat or having heart trouble... Even the healthiest among us risks death during the Ethan Experiment.

The only thing Down syndrome has to do with what happened that day in the theater is that is it now being used as a scapegoat. Oh yeah, and a springboard for the national Ds organizations to get money for things they have been wanting to fund for a while now.

Please sign the petition asking for an independent investigation in the Ethan Saylor case. And if you do try the experiment, well good luck to you and let me know how it goes, ok?

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.

It 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.

Happy WDSD

Change is coming.

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).

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?

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."

But 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.

Disability Snobs

It all started when friend of mine left a comment on a blog post about how she sees different disabilities, uh... differently and cannot lump them all together when thinking about big questions like "Are People With Disabilities Contributing Members of Society?" She referred to herself as a disabilities snob.

Then another friend asked what that was. Then someone else posted the question on their Facebook wall. Then a bunch of people chimed in, and eventually the whole thing left me wondering what it really means to be a disabilities snob.

Ok, so snob connotes superiority and a condescending attitude toward someone believed to be of a lesser position. But I don’t think that is how Kim meant it. I think she was saying it like I might say "Masha is a shoe whore." No need to get all stuck on the word whore, know what I mean?

If I were a disabilities snob, would I think my kids are better than kids with other disabilities... or even better than some other kids with Ds? Would I insist on all inclusion, all the time? Would I cringe when I see my girls dancing in a room full of people just like them... only grown up? Would I do my best to raise them to not want to be part of the "special clubs"? Would I feel insulted if a local church invited my girls to come to a special activity night for people with disabilities?

If yes, then I am definitely not a disabilities snob because none of that is where I am at these days.

I can see how Masha and Autumn could grow up to be super friends to other people with disabilities like their own or even more profound... The two of them go beyond tolerating their sister... they include her. I think M&A can move in both circles... perhaps sometimes learning or playing in a fully inclusive environment and other times doing the same in a group designed just for people with disabilities. I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world.



Right now Masha is in Gen Ed Kindy which is a lot of work and stress for me, and so far I am not sure it is the best way for her to learn but she sure is coming along. I wish though that I could find some extracurricular activities, like a dance class, that was only for children with special needs. Why? Why not fully include her all the time? Because sometimes it would be nice to just have her be exactly who she is without the pressure that comes with standing next to The Ableist.

The same goes for Autumn... she is in a reverse-inclusion preschool, which means there are more typical kids in her class than children with identified special needs. But it would be awesome for her to have someplace to dance, or play, or just be herself with a bunch of other kids who aren’t seen as The Species Typical.

That is why in some ways, our house is the best place of all. We have five young children, boys and girls, typical children and those with differing needs whose levels range from mild to profound depending on the activity. Sometimes they all get on the table and dance together, or they all scream it up tearing apart the living room, other times they break off in natural groups... that change players depending on what is going on... Masha and Autumn sometimes keep up with their brothers playing ball or wrestling, other times they are perfectly happy to chill out with Kimani (ok, so no one ever really chills out with Kimani because chill is just so not her, but you know, they play with her). It is a place where they can all just be themselves, where they get to decide when to be "fully included" and when to be "self-contained".

The bottom line is that I think most adults with Down syndrome are on the cusp... There are times they are interested in and want to be a part of typical age appropriate activities, and there are times when they would be perfectly happy to spend a Friday night at home watching a Disney movie rather than hanging out at the local club drinking Margaritas. To try to push or pull them one way or the other, that to me is what it means to be a disability snob.

There are a lot of people talking about these issues, a lot of talk.... lots and lots of talk. But not so many voices from the ones who are walking the crawl. I want to hear from those parents. What do they think it means for their child to contribute to society? What do they think it means to be a disability snob? What do they think of ableism?