Thursday, August 09, 2012

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.


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.



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.

Thursday, July 12, 2012

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.


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.

Tuesday, May 22, 2012

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.

Tuesday, March 13, 2012

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.

Saturday, January 14, 2012

"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
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
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

More to come later....