Robert Ethan Saylor: The Tragedy Continues (A Blog Crawl)-with updates...

The death of Robert Ethan Saylor in a movie theater in Maryland on January 12 sickens and saddens me... and keeps me awake at night. He was a young man with Down syndrome who didn't leave a theater when told to by an employee... so their security guards threw him on the floor where he asphyxiated... There is, of course, more to the story, but these are the essential details.

First, I find it horrifying that anyone would be thrown to the floor for not getting out of a chair... anywhere... ever.

Second, I find it horrifying that the security people involved claim that they did not know that they should approach people with disabilities calmly, using simplified language and allowing lots of processing time... They were reportedly off-duty police... they certainly know this about working with elderly people...

And I am very sure that they know that handcuffing people face down on the floor can cause asphyxiation... because that is fairly common knowledge whether or not their 'perp' has Down syndrome.

Third, I am sickened that this young man died crying for his mom... while his carer tried to de-escalate the situation (and was ignored)... thinking that he was being beaten up by thugs... with observers who did not intervene for him apparently...

I could be this mom... my daughter could be trusted to wait for me... I could go to get the car... and someone could yell at her for some 'crime'... this yelling absolutely would flood her mental engine... she would NOT understand what they wanted... she would either shut down or yell depending on how scared she was... and I would find her on the floor under cops... dying. So she can NEVER be alone??? And not because of criminals, but because of law enforcement? This simply cannot be. (And... we do tell her to self-advocate when attacked...)

Fourth, the medical examiner ruled his death a homicide. The Grand Jury said he asphyxiated because of Down syndrome. Ummm, no he did NOT. Down syndrome does NOT cause asphyxiation. SITTING ON people with Down syndrome can cause asphyxiation... Without these guards' actions this young man would be alive--unasphyxiated.

Fifth, when approached by NDSC and F.R.I.E.N.D.S. (a DS support group started years ago by Ethan's mother) who asked for an independent investigation, the DOJ responded that they were waiting for public outcry... UGH.

Department of Political Smarminess would be a lovely new name. Justice is not about outcry, it is about RIGHT--do not sully the word.

I am including posts below so you you can read more. Some include information from Regal Theaters. Some are petitions. Please read, learn and generate some outcry.

NDSC
The Unknown Contributor
DOJ Assessing Death of Man Removed from Theater
Down Syndrome Uprising
Calm, Common Sense and Compassion Would have Saved Ethan's Life
Exactly Where I'm At
IDSC
Words Hurt or Heal
Petition Posted by Ethan's Mom--Sign Me!
Noah's Dad
About.com: Special Needs
Age of Autism
Concave Bed, Concave Life
With a Little Moxie
A Typical Son
The Chronicles of Ellie Bellie Bear
Peacock Panache
Ethan's Mom on The Daily Show??--another action to take!
The Arc
suncoastmama
Learning through Love
The Bates Motel
Cowgirl Up
Big Blueberry Eyes
Down Syndrome Uprising-Call to ACTION-- Actions galore...get to work!! :)
Enjoying the Small Things
Trial Run--New... addresses, letter to cut/copy/send (and well worth a read!)
Chasing Charlie





More to come!

Where Do I Even Start????

Yes, it HAS been a while.

Just over a year ago I took on a new job... actually a new carreer, and to be honest with you, it ate my lunch. I did fine at work... during the day... at my job. But when I came home at night I did not have two brain cells to rub together.

But... I did have a dear daugther with a rare and devastating condition (let's talk about that later, shall we?) A college kid... other issues... and a husband with a commuter job.

Advocacy took a back seat.

In fact Advocacy sat in the 'way back' and I just threw graham crackers at it when it sounded hungry and hoped for the best.

It seemed like it had to be that way. I needed to survive these changes.

But what the heck has been going on while I was away?? We have been SLAMMED!!! I am not pleased.

As one of my favorite characters (in the only movies I ever really watch... sigh...) says "Prepare to meet Mrs ANGRY EYES!!

Do NOT ever tell me again that fictional stories  popularized by the media don't have anything to do with the treatment of people with disabilities--especially cognitive disabilities--ever again.

Ever.

Read this article... go ahead. I will be here when you get back!

This article says that a judge in Texas cited Of Mice and Men (a story by John Steinbeck) as justification for executing a man in Texas with a low IQ for a crime in which he played role.

Executed.

Dead.

On the basis of fiction.

Was he the mastermind of this crime? Um, no...

Were the supports in place to help him interpret his circumstances and make appropriate life choices on a day-to-day basis?

Obviously not.

Marvin Wilson could not possibly understand the ramifications of what happened.

AND the supports to make him successful were clearly NOT in place,

Despite this, the people who should have been helping him are alive and he is dead.

(And some will tell you execution is actually MORE expensive than a life sentence, but I digress...maybe only  for people who have someone to appeal???)

So... Fiction matters. Tropic Thunder matters. The "R-word" matters.

In fact they could be a matter of life and death.

I am right. Just accept it.

People, better educated and with more power than you or I will ever have, are LISTENING to fictions. Are INFLUENCED by them. Are making life decisions for all of us based on them.

Steinbeck's own son put out a statement saying he was appalled that his father's story was being used to justify the killing people with disabilities.

Frankly, I hated Of Mice and Men in high school.

Because it was effective.

And horrifying. Great writing, horrible meaning.

But Sr. Margaret Mary said that the point was NOT that people with intellectual disabilities are dangerous, but that there are situations that could make you question your accepted mores... and she was NEVER wrong. Really.

Yet, if it had come out during my daughter's lifetime I would have been first in line at any protest. I would have seen it as dangerous and would have taken my lumps for saying so.

I read.

And people without subtlety always end up with power.

And yet I was not part of this discussion. I was distracted.

Good heavens.

Forgive us Lord, for our treatment of Marvin Wilson.

Forgive me for not doing my job to ensure Your mercy and justice are heard.

I am sorry. Amen.

Sorrow and Prayers

Ricki, the daughter of my blog-friend Ruth who lives in Israel died in her sleep yesterday. I am so sad for her mother and for her family. Please hold them in your thoughts and prayers.

Disillusioned: SSI. Painful.

Went to Social Security again today for Jenn... May I say UGH?

The service I received, for Jenn was very good. The whole experience was, once again, UGLY.

This was my second experience. The SociaL Security office in our town looks new, and clean AND is absolutely the least confidential place I have ever been.

Ever.

Last time I was there I was politely treated. The woman who helped me was pleasant, professional, knowledgeable and helpful. I have no complaints at all.

AND I heard all about a guy who was in prison but couldn't quite remember when he had gotten out. This was while I was in a 'private' meeting in a carrol. Because I had an appointment.

I am quite sure he now knows  all of the particulars of my daughter's life as well.

Because he also had a 'private' meeting.

Uh huh.

Today, I did not have an appointment. I had a small issue to fix. Small enough that it was dealt with at the window (by a very helpful woman who was very patient with my anxiety.)

While I waited to be served however, I heard all about someone who had been injured who had no idea how to get by, someone who needed to provide info about their divorce and more to get what they needed, some serious disdain handed out to a person who didn't know how to work the SSI welcoming computer at the door, and someone whose birthdate had been wrong for SSI for many years--I can tell you exactly how many--and suddenly SS saw it as a problem today (which was true, rules have changed--yes, I heard that too!) ETC, ETC, ETC....

Now, this is me. I was embarrassed and trying NOT to listen--and I have filtered this considerably. So think of what I missed that others could have picked up. One person was distraught (and a little loud, but seriously, they should have been in an office!) about how many years they had worked, how many jobs they had worked, that they had always had insurance, etc until this awful thing had happened in their life... (yes, I might know what that was...)

Then two people started a conversation about motorcycles which served as a BLESSED filter...  They were chastised for talking so people couldn't hear when their numbers were called.

After exposing themselves to God and everyone, these hurting folks had to turn around and walk through the waiting area/audience to leave.

Perhaps it is because I work in an environment where HIPPA is taken seriously (so much so that I beat myself up if I mention someone's name... ever!) Perhaps it is because I have the luxury of being well-treated most of the time.

Or perhaps there is some purposeful decision to make people who need SSI 'pay' for their existence through humiliation??. I don't know, I really don't.

To me this is a huge breach... but not un-fixable.

I will say, it stinks.

That is all.

High School Memories with a New Twist

First, credit absolutely goes to the folks who discovered the error and corrected it... but WOW what an error!

A highschool in Mesquite Texas had a section in their yearbook where all the kids with disabilities were pictured with a list of their diagnoses... You can read about it here. (We will leave discussion of their use of outdated terminology for another day!)

My first thought was that the kids with disabilities either didn't have any happy events from their school year to highlight--or if they did that no one noticed them...

But, apparently the school has said that they were trying to 'honor the students for their struggles.' (I will pause while you gag!)

Kind of a novel concept for a yearbook really. They should do it for all the students...

Can you imagine all the family problems, poverty, acne, bad breakups, addictions, social struggles, hormones, academic challenges, mean-girl-itis and mean-boy-itis, bad hair days etc, etc, etc that high school kids contend with actually made it to the pages of the yearbook... probably would make the most honest, painful yearbook ever... that no one would buy or show their kids EVER!!!

Traditionally the message of the HS yearbook is that among all of the true pain of living and adolescence some great, fun things happen... I am glad this school realized this was true for ALL kids before their yearbook got distributed.

Wrongful Birth Suits: A No Win Situation...

This article makes me sad.

Heartsick actually, on so many levels...

The article starts by telling us that the family are good people. They only sued their healthcare providers for the money.

I have also fought for the money to get appropriate healthcare, education and other needed services for my daughter who also has Down syndrome. I have advocated with school districts, legislators, agencies and more to get what my child needs.

Fortunately, we have never been in such dire straits that we would consider saying that we would have aborted her if only we had had the chance. We have always been able to build, craft, find or get what she has needed thus far. This family's situation is heartbreaking.

I feel bad that the statement made by the parents about wishing they had aborted their daughter was repeated throughout the suit and in the media... this child will know about this. And even if she doesn't, everyone around her will. That will be hard.

Knowing the way these high-profile events strongly reinforce society's outdated prejudices about disability is upsetting as well.

I'm reminded of Jerry Lewis's controversial telethons for the MDA. The telethons with their requisite tear-jerking, did bring in the immediate money the organization needed. But the high-profile telethons heavily sold the belief that people with Muscular Dystrophy and other disabilities are pitiable, incapable and just 'less.' Everyone with a disability lives in the shadow of those telethons. Societal barriers are by far the hardest part of disability--they affect access to schools, neighborhoods, employment, etc more than any other aspect of disability.

(And that lack of access is what drives people to hold these desperation events... a NOT-YET ending cycle...)

We work on awareness, stopping the R word, More Alike than Different campaigns, but one of these cases full of anger and tears moves us all back again...

Beyond all this, it is easy to see that healthcare providers who DO suggest abortions in cases of things like Down syndrome (where needs are not usually dire and improving every year) could also be sued and lose just as badly... since the 'appropriateness' of such a suggestion depends on the patient's subjective feelings about disability, not on objective data. (Many people actively seek out babies with Down syndrome to adopt--therefore Down syndrome is not empiracally bad.)

No one won... no one will ever win in these situations.

"Mental Retardation," Quality-of-Life, and Kidneys--Oh MY!!!

This is a picture of Andrew taken through the snow this morning. (You can read more about him here.)

This is what my friend Kim, Andrew's mom posted on facebook this morning:

"Things I didn't know when Andrew was born... 1. that he has Down syndrome 2. that before he turned 18 he would be interviewed by TV & newspapers, make history as an actor, and be on a billboard!"

This, on the other hand, is the story of a little girl named Amelia who has been denied a donor kidney by Children's Hospital of Philadelphia because of the assumption that there are more worthy and less worthy people--and that worthiness is determined by IQ...

Quite the juxtaposition, don't you think?

The physician said he was warned that Amelia's parents were very involved with their child--like that's a bad thing... As if HE is the one who truly knows the child's value and that THEY are the ones that don't get it... The doctor also stated that denying the kidney was difficult for HIM (well, it's killing their daughter!)

Ableism is more than unkind and ugly... Ableism can kill.

Here is a post (from quite a while ago) that explains some of the ways life with intellectual disabilities has changed since this physician was in med school.

Please, read, sign the petitions, write a letter. Help save this little girl's life.

The following is a little blog carnival about Amelia:

Terri Mauro at About.com
Stephen Drake, Not Dead Yet
Pipecleaner Dreams
Kidneys and eyes
Autistic Hoya
Susan Senator
Age of Autism
Jews and Special Needs
I Can Has Autism
Love that Max
Care2 make a difference
Transplant Headquarters
ReunifyGally
Disability Studies, Temple U
Countering (Big list of supporting blogs in this post!)
USA Today
More from Susan Senator on Huffington Post
Ryn's Tales
Bad Cripple
I Don't Know What to Say
Vitals on msnbc.com
AAMD

More to come later....

Mothers' Day

We win.
No one knows it but us.

But we do.

We are the parents of kids with disabilities who get to see the true value of our children. Though it can hurt, we get past what we thought our children would become. Though it’s painful, we get beyond whatever society decides what our children can or can’t do. And, no matter what we used to think, we stand up to build the life our children need, want and deserve.

We go beyond our past ideas, to the gift of the child that is. Our world view explodes... and then expands.

We struggle. We worry. Sometimes we rage. Sometimes we cry.

And…

We are the lucky ones.

We get to know miracles. We know just exactly what it takes to learn. We know just how many muscles must respond to make a person able to walk or talk. We know just how the process of language unfolds and what it really means when it works or when it doesn’t. Reading, writning and arithmetic are more than assumptions for us.

We get to figure out what really matters. We know about justice (and injustice.) We know stuff we never thought we would or could.

We treasure moments.

And, no matter what society sees or understands, we know that love is not about ability or response to intervention or any other standard or value. We know the meaning of and the reasons for ‘fierce.’

We change the world.

Unconditional is us.

It's not easy, but we get to see behind the curtain.

We are challenged. We are stressed. We fight like tigers and sometimes we are frazzeled to the bone.

And we are blessed.

Happy Mothers’ Day to all of us!