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!

Aiming at Sarah Palin--but Hitting her Two-Year Old

So infuriating.

I have been away awhile fighting the home fires on enough fronts to make my hair straight (seriously!) But the cultural bias about disability apparently continues...

It was Sarah Palin's son Trig's, birthday this week and Sarah Palin posted a cutesy poem about him on line. In response a political commentary blog posted a criticism--not of Sarah, but of Trig... calling him that ever-favorite R-word because he has Down syndrome...

Political commentary has devolved in this country to the point where namecalling and playground slurs really don't surprise anyone--it's cheap and easy and gets adrenalin flowing. It isn't cute, and it certainly isn't intellectual, but it is 'the way it's done' in 2011. (You might have noticed this...)

Usually though the target is at least an adult... and involved in politics....

 They have removed the post. The author says in his statement that he is just angry that Sarah Palin uses her son as a political pawn. And he might even have a point--children of politicians are always part of their 'package.' The ultimate example that comes to my mind are Caroline and John-John. People might have agreed with him--if only he had made that point.

And let's just say, again, that if Trig had been of any minority other than disability, said author probably would not have resorted to a slur to talk about him... 

H/T to Stephen Drake for bringing this article to my attention.

Movie Review: Wretches and Jabberers

Larry Bissonnette, Jenn and I

I know it is the month of Down syndrome awareness, but I hope you will indulge me a few minutes discussion of the WONDERFUL, EXCELLENT movie I had the opportunity to see this weekend.

The movie, Wretches and Jabberers, premiered this weekend at the Syracuse International Film Festival so Jenn and I went on a roadtrip to see it.

It was directed by Gerardine Wurzbur who also co-produced it with Douglas Bilken, PhD from Syracuse University (and the marketing director is a NYS Partners in Policymaking grad, Jennifer Russo!) It tells the story of two men who have Autism, Larry Bissonnette and Tracy Thresher. The two men were believed to be unable to communicate until adulthood when they both learned to type. The movie chronicles their trip to three countries, Sri Lanka, Japan and Finland, where they go to share their message that there is more inside people with disabilities than the world knows.

The movie is totally engaging from beginning to end.

The paradox and the challenge of autistic behaviors that obscure the wit and humor, depth of feeling, and sense of connection (yes, you read that right--conection!) these men express, is by turns fascinating, tragic and, as a disability advocate, envigorating.

Every moment was interesting. Each person's daily life, the interactions with the men who provide communication support, the challenges of new countries, customs and foods, the absolute hunger for connection of the young people with autism in the other countries each could have been their own movie. The humor... the art... the poetry... the advocacy. Endless layers of meaning.

I can think of about a thousand telling examples to share, but I will give you two:

In Finland Larry, Tracy, their team, two students with autism, their parents and a translator went out to dinner. This meant there were four people communicating by typing on their computers and then handing them to the translator to be read in both languages. Many people would decide that this was too much trouble. This crowd was undaunted. Hearing each other was just so important.

Another favorite moment was a conversation between Tracy and Larry. They were sitting on a bench typing to each other. Tracy wrote that he was enjoying the friendship and fellowship of being together on this once-in-a-lifetime journey. Larry replied, "Feasting on my friend's company I store up memories."

I wrote this down--I want to write it on my wall.

Breath-taking!

There is so much more in this film that could be explored: spirituality, civil rights, homelessness and beyond. How they packed so much into a 90 minute movie and left me wanting more I do not know. This is why they are filmmakers and I blog!

The movie was followed by a panel discussion that included Doug Biklen, Ph.D., Larry Bissonnette, Pascal Cheng, Harvey F, Lavoy, Tracy Thresher, Gerardine Wurzburg and was moderated by Lakshmi Singh a newscaster from NPR. The insights, humor and fascination continued in real time!

I was also impressed by the accessibility. I noted sign language interpretation, real-time captioning and Write Out Loud. The event was welcoming for a wide spectrum of people--very profesionally done.

During the panel discussion Gerardine Wurzburg announced that the soundtrack from the movie will be available soon--trust me, this is a good thing! They had original music, much of which came from things Larry and Tracy typed. And they were sung by such people as Ben Harper, Judy Collins and Norah Jones.

In the panel discussion Larry wrote that they were meant to be movie stars and walk red carpets to share their message.

And either in the movie or in the panel discussion (I can't recall which) Tracy wrote that he and Larry could become a sideshow, but that their goal was to go beyond being a sideshow to get out the message that all people should presume competence.

This is a story of AND.

"Severe" Autism AND Relationships.

Behaviors AND Intellect.

External Challenges AND Interior Depth.

Needs to be met AND Gifts to share. 

AND it is a thing of beauty.

Bring it to your town, you will be glad you did.

Horror Story

I have been following this story out of Texas. It makes me ill. Take a few minutes and read it, I will be right here when you get back!

I find this painful in so many ways:

• It sounds like these parents did everything right. They raised their daughter to be an individual with interests and abilities and moved her into her own home (with the supports she needed) so she would have her own life in place before something happened to them... and they have advocated for appropriate care for her... And doing everything right has not protected them or her.
• Ruling out medical concerns before giving antipsychotics is not just Best Practices, it is Med School 101. Bottom of the line basic medical competence.
• A 'secret hearing' with permanent consequences in the USA? No facing your accusers? No jury of peers? I could understand the courts having the right to make a temporary emergency judgement to get someone out of a dangerous situation, but a permanent secret decision?? This can't be right.
• Then criticism for the parents for taking it to the newspapers--when they were not allowed in the courtroom? They should just lie down and take it?
• The statement about the system meeting an average is not right--what this means is that the system fails in half the cases... therefore it is just right?

Here is another article with video. In the video, among other things, we hear that her daughter has gained 20 pounds and seems lethargic (or sad...) on this new regimen. This is evidence that she is NOT thriving, is it not? Is the secret committee intervening now?

This story terrifies me. From everything I read we are these parents. We care. We advocate. We insist that our daughter be considered and treated as an individual with significance--always.

I hope the parent groups in Texas are standing in solidarity. I hope they are realizing that their progressive and effective beliefs and expectations for their children may have no bearing either if they don't.

R-Word Firestorm

The first time I ever saw self-advocacy I had no word for it. I was in college and I was riding the bus into town to do some shopping and this young guy called someone else on the bus a r*tard.

There was a woman who had a disability sitting toward the front of the bus. She turned around and told him to shut up...

And that jerk looked at her and said, "You don't even know what that word means!"

"I do too! You're saying he's bad because he is like me. Well I am NOT BAD!"

The bully said, "I wasn't talking about you," and got off the bus.

But he was.

Insults are words that give people a little verbal slap. They are individual and specific.

Slurs are the big guns. Slurs not only insult individuals, but burn entire groups of people. They are part of every civil rights movement because they disempower. They refer to gender, race, religion, disability and more. Slurs are so powerful, so forbidden and so tempting... The possibility of hitting someone that hard makes us giddy.

So we create exemptions to make it OK to use the occasional slur. Here are some of the exemptions I have noted over the past week:

*It's OK if you're a Republican. (IOKIYAR)
*It's OK if it's funny--or satirical--enough. (IOKIIFOSE)
*It's OK if you're referring to yourself or your own group. (IOKIYRTYOYOG)
*It's OK in private. (IOKIP)
*It's OK if you call it Free Speech. (IOKIYCIFS)
*It's OK if you're really mad. (IOKIYRM)
*It's OK if you're not prejudiced. (IOKIYNP)
*It's OK if you didn't mean it that way. (IOKIYDMITW)

Have I left any out?

Do they work? Do any of these exemptions actually de-slur the words???

No, they don't.

It's just not OK. (IJNOK)

Picture from here.

Wrong Again: This Time About Palin and Limbaugh

If you ever want to know how things are going to play out politically, ask me and then know it will be the opposite. Honestly, last year I was certain that President Obama would make more than a behind-the-scenes apology after his Special Olympics dis. And I was equally certain that Rahm Emmanuel wouldn't. And I certainly couldn't picture Sarah Palin tsk-ing a Republican...

And of course I was wrong on all counts. I should have learned, but I didn't.

This week I KNEW for sure that NO mom would EVER put up with the level of POISON about people with cognitive disabilities that Rush Limbaugh spit out on his program this week.

Wrong, wrong, wrongety, wrong, wrong!

Not only did Sarah Palin put up with it, she joined in. She called Limbaugh's vehement spewing of the r-word over and over again "hilarious" and "satire."

I never saw that coming.

Of course, I do realize that disability issues don't give anyone a lot of political traction--if we were that powerful or respected these issues wouldn't even come up. In fact I have mentioned this to everyone who said that Sarah Palin was using her son with Down syndrome as a political prop. I told people that Trig really wasn't going to get her any clout, but with him she might change the world.

And, I realize that Sarah Palin does have a tendency to jump into things she doesn't understand and then quit when they get hard: things like talking to reporters and governing Alaska, for example.

Still, I believed she would hold firm for disability respect because she is a mom.

I predicted that she and Rush would plot something out where he would say that he wouldn't ever be "PC," but would that he would defer to a mother's righteous rage.

Good thing I didn't bet money.

So how will this play out?

Will people see this as another episode of Sarah Palin quitting when the going got tough?

Or will folks see this as proof-positive that disability issues don't pertain to them, and as permission to carry on the traditions of disrespect like a bunch of playground bullies?

Or will people be horrified that when the chips were down a mom, any mom, chose Rush Limbaugh over her own baby?

Or was merely giving birth to a baby with a disability enough for everybody?

At our house we have tons of family stories about how we look out for each other and how we stick together no matter what, how will this event play out in the Palin family stories?

This time I'm not even going to guess.

Read all about this event here. And did you notice this?

Picture from here.

Rush Limbaugh Brought Tears to My Eyes Yesterday

Caution: Watch this video at your own risk. I heard it unprepared yesterday and it actually brought me to tears. I am only posting it because when I mentioned the incident to a couple people yesterday they didn't believe me...

My daughter has Down syndrome. I'm not a wimp. I stand up and handle lots, but the furnace blast of abject hatred in Rush Limbaugh's broadcast took my breath away.

On his radio program Limbaugh praised Rahm Emmanuel for calling liberal Democrats r*tards... and that was just the beginning...

Limbaugh yells the r-word over and over again, to ridicule liberals, to mock people with disabilities who deign to say "stop it" when something hurts them, and to deride the disability activists who met with the administration at the White House Wednesday about respect for people with cognitive disabilities.

Crass.

Cruel.

Limbaugh's tone leaves no doubt. He believes people with cognitive disabilities are nothing:

Beneath contempt... Completely valueless...

Emmanuel's incident was bad enough. Limbaugh's diatribe made Emmanuel look like an absolute saint.

Yesterday Limbaugh stated on his website that he was just quoting Rahm....

In admiration?

Or because he is 6?

Well Rush, as my mother would have said:

"If Rahm Emmanuel jumped off the Barge Canal Bridge would you jump in after him???"

Way to think for yourself AND take responsibility.

Sarah Palin said Emmanuel should be fired for his remark--a remark that took months to even hit the newspapers... She made statements about Rick Perry's blatherings in Texas yesterday as well...

She has herself a dilemma now. This guy is supposedly her buddy--and he hates her kid.

What's she gonna do? Not for nothing, but mom to mom? I'm hoping for a full-on mama bear smackdown.

If my family, my friends and loved ones have to swallow this bile, this better be a giant step toward respect.

Guest Post From 'A Frustrated Grandmother"

This is our Oliver. Even before he was born, we were led to believe that Oliver wouldn’t do much. Thanks to all the medical technology available nowadays, we knew he had a good chance of having Down syndrome and we knew for sure he had a heart malformation. We were given a very gloomy prognosis. Weeks at the NICU, potential heart/respiratory problems , feeding problems, weight gain problem were all predicted. Well, he beat all the odds: 3 days at the NICU, no heart related problems, excellent nursing, good weight gain, good muscle tone, responding to all kinds of social interactions, good development, happy, never ceasing to amaze us, loved to bits by all of us.

He never needed an extra trip to the doctor’s office, just the well child visits covered by his parents’ health plan. He was a good patient... until Saturday January 23rd 2010.

You see, the only requirement Oliver had was to get a series of 4 shots during the winter months to boost his immune system and avoid getting sick from RSV, a common virus, which can cause a wreck in kids awaiting heart surgery. He had his November shot and his December shot, and stayed healthy.

Then, the nightmare began.

The company that Oliver’s dad works for decided to change insurance companies. The logical thing would be that all his medical needs would roll over, but his parents discovered that the pharmaceutical company would not deliver the shot unless they re-applied and got re-approved.

There was a delay transitioning between the two insurance companies, and a further delay with the pharmaceutical company apparently.

Before the process was completed Oliver had caught a common cold. His parents dealt with the cold the way the doctors told them to. They waited for the shot the way their insurance company and the pharmaceutical company told them to. They did everything they were told to do. And Oliver ended up in the hospital with RSV and pneumonia.

Why the delay?

I am sure all of those people could find Oliver’s information just by striking a couple of computer keys. It’s hard to believe they didn’t see that Oliver needed to be treated right away. Shouldn’t patients like Oliver have a red flag and get channeled a different way than people who aren’t in as much danger to speed up the process? Shouldn’t they take care of all the procedures instead of delaying it by making parents call doctors and rewrite papers?

All the information is available. Channel these urgent cases to employees trained to deal with the procedures right away, who can tell parents not to worry, that they are going to take care of everything, that they are going to call the pharmaceutical company so they deliver the medication right away, and that parents must call back if they don’t receive it by the next day.

You think it’s crazy? Why, one can get plane tickets instantly, or get approved for a credit card instantly, or have his/her information available on the net to anyone that wants it. These companies are being paid billions and billions of dollars, but the people that are paying them are being rationed and delayed when they need help.

Are you thinking that their employees are dealing with hundreds of requests and it takes time? Oh, but wait! What did Oliver’s parents received on the mail while Oliver was still in the hospital? A notification from their insurance company warning them that they “don’t guarantee payment for services provided while in the hospital,” that the company would have to determine the “appropriateness of the admission, length of stay and level of care and would have to review it against established criteria."

The timing was cruel. It added so much stress to an already horrible situation. Were his parents supposed to take him off the ventilator and take him home?

Didn’t Oliver deserve to be treated this diligently when his mom called requesting the approval of the shot?

I don’t even know whether my complaints will fall into the right hands. I am pretty sure the people who hold the top positions in these companies have learned to isolate themselves from us, the people that need their services.

We are blessed to be in a city with good medical care and to have Oliver home with us and healthy again, but still in so many ways, the system does not work:

*Tiny doses of lifesaving medications for babies should not cost over $1000.

*Somebody else besides the company making the $$ needs to make the decisions on what treatment is needed and how fast this treatment should happen.

*The process of changing insurance companies shouldn’t delay care.

*Companies we rely on for important medications need to be timely and communicate.

We need a system that hears the people and tells us: don’t worry we’ll take care of you.

~Ana

(Picture of a brown haired baby boy wearing a t-shirt that says Mommy and Daddy Love (heart) Me.)

More on the R-Word

You may already know that Sen. Michulski introduced legislation to ensure that future federal legislation uses person first language a couple of weeks ago.

What you may not know is that this story has been playing out in my region as well. This summer one of our county legislators was recorded calling another an 'r-word' during a roll call vote.

Nice, huh?

In early August there was a cross-disability press conference and a protest at a meeting of the County Legislature where I spoke. Here is what I said:

Recently someone in this chamber was recorded using the r-word... and sadly, no one was recorded saying, "Hey, we don't use that word here!"

There is no minority who would accept this sort of disrespect, and the disability community should not have to either.

It was a mistake, I know. And before my daughter was born with Down syndrome I can't say that I "got" disability either. My life experience has taught me a lot.

Fortunately you do not have to wait for life to gift you with disability for you to become aware and respectful of disability issues.

There are many ways you can learn about disability and many actions you can take to improve yours and our community's awareness:

*You can seek training from any of the many agencies that support people with disabilities in our area.

*You can support agencies and people with disabilities personally and through legislation.

*Most of all, you can get to know people with disabilities. Without them your knowledge of the strengths and needs of our community is incomplete.

If you follow these steps a mistake like this will never happen here again, and the disability community and those that love them will thank you.

In closing I would like to quote Eunice Kennedy Shriver who founded Special Olympics and died yesterday. These are the kinds of words we want to hear from our leadership about disability:

"You are the stars and the world is watching you.

By your presence you send a message to every village, every city, every nation.

A message of hope.

A message of victory.

The right to play on any playing field? You have earned it.

The right to study in any school? You have earned it.

The right to hold a job? You have earned it.

The right to be ANYONE's neighbor? You have earned it!"

Thank you.

This week the Monroe County Legislature is slated to introduce Person First Language Legislation stating that future legislation will be crafted using person-first language. I wasn't able to be there last night and I don't know what happened.

I'll let you know how that goes!

(The video is a bit long, but really worth watching!)

Bits and Pieces

To start with, a funny story: Jenn was looking at a doll the other day. It had kind of a thick body and a screw that held it together right in the middle of the abdomen so my daughter thought there must be batteries and asked me how to make the doll talk. I looked the doll over and it didn't have batteries after all and I said she wasn't a talking doll.

Later I heard her tell her sister about the doll. She said "That doll doesn't talk. We need to get her a dynavox!"

(FYI: a dynavox is a voice-output communication device. Several of Jenn's friends use them.)

New York Times: Gary Presley, author of 7 Wheelchairs, blogger and FB friend had this essay in the New York Times last week!

Disturbing Fact: New York has over 6000 people on its waiting list for adult services. Check out your own state's statistics and sign the end-the-waitlist petition.

New blog: Check out this new blog by Penny Green. She is a mom. Sadly, her son with Down syndrome died 20 years ago from heart complications. She is from the UK, and an activist for folks with Down syndrome--especially those with heart issues. Stop by--and like all of us, she loves comments!

Finally: What do you make of this?

The picture is of my daughter wearing paper sunglasses--don't know why... Funny, my sister-in-law didn't send me the pics of her wearing them... :)

Curing Down Syndrome?

This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:

**THIS IS NOT URGENT

Cancer needs a cure. Down syndrome? Not so much.

**THIS IS NOT AN EXCUSE TO ACT LIKE A JERK

One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???

REALLY???

One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."

**THIS IS NOT HELPING DISABILITY ACCEPTANCE

I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.

Sigh...

For somethng truly beautiful, read this.

My Hopes for Glee

I have such a mixed bag of feelings about the TV show Glee... My two older kids have always been vocal music-theater-show choir folks, or La-La's as they are called 'round here (the instrumental musicians are called Band-o's, fyi.) They love the show. They love the music and the mash-ups (where they blend 2 unrelated songs & styles into one performance), they love the dance and they LOVE the drama.

I have gotten into watching it with them. The music and dancing are great and the stories have led to lots of conversation.

This week Glee put the whole cast in wheelchairs and introduced two characters with Down syndrome... While the ideas of team-building and of walking a mile in someone else's moccasins aren't totally awful, I had my issues. Naturally!

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over--more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional...

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

My son, the actor and I have been discussing whether an actor who can walk should portray a wheelchair-user. He points out that acting is all about portraying people you aren't... He pointed out that he's played a farmer, a skeleton, a soldier, a student, a drunken businessman, and several variations of old men, and some really disturbing evil characters. He's only played a teenager once and that was a boy from the 1940's.

We have talked about blackface, about the percentages of disability in the real world vs. that on TV. And the percentages of average-looking people in the world vs. those portrayed by Hollywood...

As I say the conversation has been interesting. And unresolved... but that's how discussions with teens are!

Interestingly my blog-friends who use wheelchairs hated the show (see here) the bloggers who have kids with Down syndrome liked it (see here and here.) As Wheelchair Dancer points out, a consistent disability message is hard to find, and heirarchical thinking is often accepted--or even promoted--within the disability community itself.

I myself think the show has potential for disability acceptance. They are willing to 'go there' with tough subjects (as evidenced by the ongoing story about the gay student and his father... and all the teen trouble that's rampant, etc) and they don't lose their sense of humor or style as they do it... Kids LIKE the show!

IF they could come to understand that they don't have the whole picture of disability and look outside themselves for info, I think they could be awesome. Some say it's a big IF... we shall see.

To start with:

*They could have the teen girl with Down syndrome pay back the friend that bought her a cupcake--or better yet, lend her some $$. She should be a contributor, not just a recipient.

*They could introduce the kids to some REAL dancers who use wheelchairs.

*Lots could happen with the teen with Down syndrome... and with the big sister (though even if she must live in a nursing home she should still be and about, unless she's sick...) They also need to watch the 'childlike' stereotype.

*They would need to stop the remarks about "Never being able to get up... Never not be disabled... etc..." Gag me. Pity--for self or others--is not a viable life-strategy.

*They could also play up the realizations that many of the kids voiced that using a wheelchair lowered their status. Should it?? Um... no... but it does. That could be explored.

*There is lots of story potential about the difference between accommodation and unfair advantage. It is tricky stuff, but they worked that in with their "Diva-Off," I think they could handle it... IF they got some real input from the disability community.

A lot of this could be woven in with the other story-lines... And finally...

*How's about a Glee-ADAPT mashup??? :)

Just my thoughts!

Advocacy Skills: You Too Can Give Testimony

Yes, you. Yes, really! Trust me! :)

As mentioned in my last post I gave testimony at the NY Senate Finance Committee Budget Hearing on Monday. I learned to give testimony during my Partners in Policymaking training and I learned even more Monday. I traveled with a friend of mine who was scheduled early in the day and I was scheduled later (even though I signed up before she did!) I ended up being the last speaker of the day so I pretty much heard EVERYTHING. It was a long day.

First, the basics: Many agencies or branches of government hold hearings or have opportunities for the public to speak their piece. I have attended hearings hosted by the OMRDD, Department of Education, County Legislature and more. You can learn about these opportunities from connected friends (get on an e-mail list or 7!!!) or from agencies' web pages. Regional budget hearings are a new innovation in NY--a very positive one, I think.

Hearings are held when a group or agency wants to hear from the public either to guage sentiment, gather information or demonstrate the existence of support/dissension on a topic. They will announce the hearing and often include a list of topics they are interested in. You don't need to address all of them--just what interests you.

The announcements also include things like how much time you will have to speak, whether or not you need to register and whether they want copies of your testimony (bring some anyway and give them to the clerk even if they don't formally request them.)

Giving testimony is really a good type of public speaking--you usually have only 2-5 minutes and you are EXPECTED to read it.

People generally begin by thanking whoever they are talking to, introduce themselves, give the body of their thoughts, and end with a call to action (telling the panel to either do something or stop something.)

After listening to way too many folks talk the other day I have some other pointers to add:

First a RULE (NOT a pointer!!!) Stay within your allotted time. Write your testimony, practice it and edit it until it fits. Do NOT go over your time. EVER!!! If you do I want you to imagine my pointy elbow in your side--that's right, a little virtual negative reinforcement for you. Because I care.

I know--you're passionate. I know--you have important things to say. Guess what?? Everyone there is passionate and all the issues are important. Once time has been called, no one cares about your ideas or issues anymore. They just want you to go home.

That is not the impression you are trying to make. Cut it!

To their credit the Senators remained pleasant and engaged all day. I can't imagine how. I did not catch any of them dozing or rolling their eyes... very impressive, actually.

Be memorable. There are a few ways to do this. You can incorporate some short, quotable statements or sound bytes in your talk. Don't overdo this or you will sound like an advertisement rather than like testimony, but make your take home points stick with folks if you can.

Tell your story. An agency director I know elected not to go to the hearing because he thought hearing from parents would mean more. In retrospect, I think that was a good call. There was one mom who told the heartwrenching story of her child's behavioral needs and the services that rescued her family. She had the whole room wiping their eyes--I would not want to be the legislator who cut her program! I don't even know if she ran over time, that's how engaging she was.

Connect to your issue. Use word pictures and examples. Try to touch BOTH your listeners' heads and their hearts.

Numbers. Now I admit I hate numbers, and it is likely that people on the Senate FINANCE Committee don't hate them as much as I do. Yet, sitting in a room hearng list upon list of numbers kind of makes them all run in together. Give a few salient numbers. Give your numbers some context. Someone talking about libraries pointed out that their user numbers were greater than the attendance at the Buffalo Bills and Sabres games... And even I still remember it.

Delivery. Speak with some enthusiasm. And as much clarity as possible. Edit enough that you don't have to rush. You don't need to be a master-performer, but enthusiasm and blahness are both contagious. You want to generate enthusiasm (Enthusiasm doesn't just mean being happy-happy. Passionate frustration works too.)

Hyperbole. I really didn't see this Monday, but I have at other hearings. Don't be over-the-top in your manner or descriptions. You are trying to be credible, not generating market-share for your talkshow. Be compelling AND credible.

Structure your statement so that you can cut out pieces if your point has been made repeatedly or if they decide they need to shorten everyone up for time (though if they just turned off microphones afer time was called this would not be necessary!) Journalists recommend the "inverted pyramid" style of writing. I don't do that, but I do organize things in chunks I can remove if needed.

Practice what you have written. Fix things that just don't sound right. I wrote about dismal employment rates, my mouth really wanted to say 'dismal unemployment rates.' After flubbing it 4 times I changed it... it was SO much easier that way!

Written testimony. Bring copies of your testimony--and other supporting documentation--for the committee even if they don't ask for it. And include contact information. This way they have something to read later if they are so inclined and if you are cut short they still have your whole spiel to consider.

Change it up. If I go to another hearing about this I will add different points (like, no one mentioned that Medicaid dollars all get spent in the local economy...) Speaking to the same senators you would want to set a familiar tone, but not be totally repetitive.

Supersize it. If you spent the time writing testimony it should be USED! Blog it. Put it in your group's newsletter. Turn it into a letter to the editor... send it to legislators who weren't there... Come up with your own ideas on this. Do not ever waste efforts!

It isn't difficult... it is over in 2 minutes... it can make a difference. Try it!

This picture is my friend Jackie ready to give her testimony.

My Testimony at NY Senate Finance Committee Budget Hearing

On Monday I gave testimony at the NY Senate Finance Committee Budget Hearing in Buffalo. It was a long and interesting day... I will have more to say about that tomorrow.Here is my testimony:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.

As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

(I took the picture from the back of the room... you can see the crowd and the senators on the stage. In the crowd are many folks in orange--they are from ADAPT.)

What Can We Do??

Governor Paterson suggests that the way to fix New York's financial woes is to cut funding to the OMRDD (developmental disabilities) and to the OMH (mental health) by 10%. When you take into the loss of matching funds this will add up to something like $375 million to the agencies that provide care and services throughout the state in this fiscal year...

As a solution our Republican legislators have proposed that NY cut Medicaid--victimizing the exact same population (with the addition of the elderly...)There is plenty of discretionary spending in the state, but THIS is where we begin.

I am disgusted.

I talked about why we'd advocate in my last post. Now, I want to talk about how:

1. Write letters, faxes, e-mails. The following is based on info was sent out by The Advocacy Center.

What is the best way to make contact?

By e-mail or fax (because of urgency) - or directly by telephone and in person.

Who do I contact? What if I do not know who they are?

Contact your personal State Senator and State Assemblyperson. You can go here and type in your zip code to get the names and contact information.

Are there others I should contact? Yes. You should also contact:

Senate Majority Leader Pedro Espada, Jr
espada@senate.state.ny.us

Senate Minority Leader Dean Skelos
skelos@senate.state.ny.us

Assembly Speaker Sheldon Silver
Speaker@assembly.state.ny.us

Assembly Minority Leader – Brian Kolb
KolbB@assembly.state.ny.us

Diana Ritter, Commissioner of NYSOMRDD:
Commissioners.Correspondence.Unit@omr.state.ny.us

When should I do this? Best if before Wednesday, October 28, 2009

Guidelines for your Letter or Conversation

For Parents, Grandparents and other concerned family:

My name is_____________. My ________(child or other relationship to you of person with a disability) has __________.

For Self-Advocates:
My name is_____________. My disability is__________.

I have received (or my family has) ______________services (please list all examples if more than one) from_______________(names of agencies.) This has helped (me/my child/our family) in the following ways:_________________________(please be specific and name the direct impact it has had; for example – improved educational program, improved learning/grades, obtained employment, improved health obtained access to X,Y,or Z services, etc.).

Please do not cut OMRDD Family Support Services and Local Assistance funding. These services provide important support for children and adults with disabilities, and their families, including services like:

Whatever your family receives. Include things like:
Service coordination
Parent information and education
Professional and volunteer advocacy support to access complex systems of service
Family reimbursement to obtain otherwise unaffordable support

These services save New York State additional expense, by allowing people with disabilities to remain in their family homes or to live as independently as possible without reliance on more costly publicly-funded residential and day programs, and public benefits.

Thank you for your thoughtful consideration

Your signature and address (address is important so they know it is a valid letter).

2. On-line Advocacy:

If you prefer sending your correspondence on-line go here and fill out the form. You can personalize it with your own details--in fact, please do!

3. Go to your legislators' offices. In your home town, or in the capitol. Take pictures for your newsletter, your website, your Facebook page and for your suburban newspaper.

4. Go to the hearings. Rally. Gather (and remember uniting does not require uniformity--join cross-disability actions to be heard.) Invite the media.

5. Keep hope. California succeeded with a class action suit to halt similarly ill-thought out legislation last week.

Picture from here.

Why Even Bother??

OK Folks,

I am getting a little exhausted trying to have this conversation with person, after person, after person, after person... so I am putting this in writing! Please pass it along!!!

The Governor of New York is proposing massive cuts to programs to the OMRDD (developmental disabilities), and the OMH (mental health)offices in NY. These offices provide the structure and funding for most of the services that people in these populations receive in NY.

These are not cuts to next year's budgets, these are cuts in what they have agreed to pay THIS YEAR (don't try this with your bills at home!)

At the same time, members of the State Assmebly have proposed that Medicaid funding be cut drastically... now. Leaving people with disabilities and the elderly high and dry...

We know the state is in trouble-- at this point everyone heaves a big sigh and says

So... WHY SHOULD WE EVEN BOTHER?????

So, with no further ado, 9 reasons to take a stand on this issue for the elderly and people with disabilities today:

9. There is already a waiting list for services for people with disabilities in NY. These cuts will make that list and that wait longer. This system is currently the ONLY mechanism by which most people can receive services.

8. These cuts will not only mean cuts to operating budgets to agencies across the state. As a consequence of these cuts those agencies will also lose any matching funds they receive from other sources. Millions more will be lost to our state... many agencies may be forced to close.

7. These cuts will increase unemployment in NY--both for caregivers and for people with disabilities who rely on care so that they can work, and for those who require support for employment (this after the president has declared October National Disability Employment Awareness Month--is that ironic... or isn't it?)

6. Increased unemployment and poor care for people who need it will both cause a cascade of other problems for the state... all of which will cost.

5. Political Game 'A'. When a "leader" takes everything away from everybody and then gives back to whoever screams he/she emerges a hero.

It never fails:

Some group that doesn't have a voice won't scream so their programs will get cut which improves the bottom line.

AND the leader is seen giving to the screamers...

It's a win-win for any politician... (NY has seen tons of this, but I do not have time to create links for this--I have letters to write!!)

4. Political Game 'B'. The other most common political game is that no matter how many letters, calls, etc that a legislator's office may be receiving the legislator will tell the world

"I am not hearing from _______________" (insert name of whatever group they don't want to listen to.)

They must hear from us and we must make our presentation OBVIOUS to the rest of the world--through media, letters to the editor, and more--in order for our position to be recognized.

3. Political Reality 'A'. If your representation to the legislature is in the minority party, your job is bigger. Not only do your Senators and Assemblyfolks need to hear from you, but so do the Governor himself, as well as any committee chairs and the Minority and Majority leaders...

WE have to make it possible for them to be heard on our behalf.

(Are you listening, Monroe County?)

2. Political Reality 'B'. Our elected officials are politicians. Wheelers and Dealers Extraordinaires! This is their first proposal.

This proposal is the EASIEST (for them.)

It is NOT the best they can do.

Not even close.

If we accept the easiest, we will not get their best.

We deserve their best.

And.... ding, ding, ding....drumroll... fanfare and confetti.....

1. Our loved ones deserve and NEED their best.

(Take another look at the picture at the top!)

It is time to put our state government to work.

Are you psyched? Are you with me??? Are you ready to DO SOMETHING?????

Check back in a bit for a 'what to do' post.... give me a little while, I do not have magic typing fingers! :) But it will be today. The governor is bringing this to the legislature this week--possibly Tuesday.

Picture: NY State Senator Joe Robach at the Flower City Down Syndrome Network Buddy Walk. September 2009.

No Drive Through Life and Wrongful Birth

I have blogged before that many years ago when I was single, years before my daughter was born with Down syndrome, I believed--and told people--that I thought I would be fine if I ever had a child with a physical disability, but not a cognitive disability.

I have always pictured God hearing my little declaration and rubbing his metaphysical hands with glee. I picture God knowing that that that thing I dreaded would be one of the best gifts of my life. I picture the anticipation of my being surprised by joy I could not even imagine making Him smile the way I smile about the Christmas presents I have hidden for my loved ones...

When my daughter was born we had a few hours of shock and I was given a quick lesson on disability philosophy by a dear friend of mine who has CP, and another by the guy who answered the phone for our local DS group whose first word to me on hearing our news was, "Congratulations!"

Then we were on our way.

Having our third child meant all the joy and sleeplessness any new baby brings to a family.

That she has Down syndrome meant that and so much more. We were introduced to the parallel world of disability and all of the amazing folks who live there, we got to learn about and appreciate the hundreds of intricate steps involved in any piece of human development, we had to be resilient, we had to be creative, we had to learn new skills, we had to be intentional and 'attentional' about all manner of things we never even knew existed before.

Some things were easy and some have been very difficult. But I have indeed learned that things that are easy are often not as valuable as the things/relationships we must invest in.

We couldn't have a drive-thru life--we experienced the slow-food alternative. We have layers of complexity and relationship that have meant we must always engage with our life and as Robert Frost wrote, "That has made all the difference."

These opportunities for learning and growth have enhanced the lives of our whole family.

Beyond this, the things I have learned have given me the opportunity to give back--to share the things I am learning with others along the way. I have learned advocacy and public speaking and gained a sense of purpose that I never had before.

My husband and other children have benefitted as well. The common purpose of parenting a child with a disability has enhanced our family life on all fronts--the fact that Jenn is a great kid makes it fun too!

My older children have a sense of justice and an awareness of social issues and have had the opportunity to speak out in many forums that other kids their age have not. They have both taken an active role in helping Jenn learn and grow and the responsibility and maturity they have developed is already helping them at school and work as the begin to make their way in the world.

Last week a woman I met commented to me about my daughter with Down syndrome saying, "Well, sometimes we don't get the life we ask for so we just have to make the best of things..."

"Actually," I replied, "I have a much better life than the one I asked for--I wouldn't change a thing!"

She seemed very surprised.

I went home and told my kids about my conversation.

My daughter said, "How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!"

I laughed because, to tell the truth, so do I.

Now, I had this all written and that line was supposed to be the end until I read this article.

A family in Oregon is seeking big bucks from the doctors who did not diagnose their toddler's Down syndrome pre-birth. They state unequivocally that their daughter has changed their life and they would have aborted her if they'd known.

This article made me physically ill.

First of all I feel heartbroken for the family whose experience with their daughter has not been as positive as mine.

Secondly, it frustrates me that this story has made the news. My story about the positive impact disability has had on my life will never have the credibility with our ableist society as this family's story will because our society fears disability and WANTS excuses to opt out of dealing with disability and those who have them.

I know families whose experience with their typical children has been extremely unpleasant as well for various reasons, this isn't necessarily a disability issue, but disability will undoubtedly be blamed.

Thirdly, I am desperately saddened for that little girl and her siblings growing up in a town that knows that her family would have aborted her if they'd known her. Who will want to babysit her or be her friend? What will kids say to her and her siblings on the playground? And how will this stated need for perfection affect hers and her siblings' sense of security with their parents? I can't imagine any amount of money that would be worth the cost.

Picture from here.

Inspiration and a Call to Action

My daughter introduced me to this song from Ragtime last year. My son heard the following quote in History this year and thought I should share it with you:

"I have pleaded your case not in the tones of a feeble mendicant asking for alms but in the thundering voice of the captain of a mighty host, demanding the rights to which free men are entitled." John Llewellyn Lewis

Now, call your representatives (in fact, call your senators too!) and tell them that you can't reform healthcare without reforming longterm care.

Tell them that the bias toward funding institutions INSTEAD of community-based care options is more expensive, prevents the will of the customer from weeding out non-competitive, outdated and undesireable services, keeps the disability community segregated and contributes to the high unemployment rate of people with disabilities since living in institutions eliminates many opportunities. And at times this bias keeps people with disabilities in situations where abuse is rampant. (Read this article to learn more.)

Today was a call-in day for the House of Representatives, for some in the west there is still time to call--for those in the east e-mail, visit or call tomorrow--a lot of calls today would have been great, but voices raised at any time have more impact than silence on important issues.

Attention Parents of Young Children with Disabilities: The Fight Club Video and the Community Choice Act

There is a horrible video from an institution for adults with disabilities in Texas where the employees forced the residents to fight for their entertainment. I know many parents of children who say they didn't see it and won't ever see it because it is so upsetting.

In a lot of ways I don't blame them a bit. It isn't that they don't care, it's that they hope to change future of the disability community by putting all their energy into building up their own child and helping them be the best they can be.

I applaud their efforts--I have done (and do) the same myself.

But because of this focus many parents don't get involved in disability issues, don't call congress or sign petitions. And this is a shame.

You know what the worst part about the "Fight Club" video out of the institution in Texas is?

It wasn't Willowbrook. In the legendary Willowbrook expose from the 1970s the facility was run down, the residents weren't dressed and few had had any education at all...

In the Fight Club video of 2009 the place looked decent, the men looked clean and modern and well dressed, many or all had clearly been taught much--they could speak and more.

And still they were victimized.

Like every other parent who watches that video my very hairs are standing up on end, screaming, "NO, NO, NO... NOT my child!!!! Please no..."

The sad truth is that to create the world we want for our children with disabilities we have to do more than bring them up. We must participate in creating the situations that will receive them.

We must get them ready for the world AND get the world ready for them.

The good news is we don't have to kill ourselves doing this. We don't have to make it our full-time (or even part-time) job. There are many, many ways to be heard and make a difference without becoming overwhelmed--honest.

First: get yourself a decent source of information. You don't need to watch all of the videos and read all the hours of congressional testimony yourself, but you need to pay attention to someone who does.

The National Down Syndrome Congress, The American Association of People with Disabilities, The Arc and more have government newsletters and send out action alerts to let folks know about the important issues.

Second: Read the e-mails you receive. Or at least a percentage of them (LOL!)

Third: Take an action. Make a phone call, write a letter, fax something. These are all short actions that add up to big impact. If you feel the need and have some energy to invest, join a committee or visit a legislator (or more than one.) Don't burn yourself out, just pick an action and do it.

Fourth: Forward the e-mail to your friends and family and ask them to help.

Right now there is a problem with Medicaid. It easily covers institutional care--it wants to pay for care to be given in institutions or nursing homes. It does not cover care in individual homes. (They call this institutional bias.)

This is a problem for people with disabilities (who get medicaid when they are unemployed, or considered uninsurable by their employers' plans) and for older folks who want to stay home as they age.

Now, care at home in neighborhoods is better. No one drives past an institution of any kind and wishes they could live there.

It is cost effective. They estimate that community living costs around 1/3 less per person than institutional care.

And if the nightly fighting from the Texas video had been happening in a neighborhood home SOMEONE would have heard it and complained.

Call your congressmembers. Tell them the Community Choice Act matters to you.

Creating the future your child will thrive in begins at home--and in the world.

We can do this together.

Let me know how it goes!

Disability Prejudice: You Have to be Carefully Taught

This actor, Cerrie Burnell, is on a children's show in the UK called CBeebies and parents are protesting that her lack of an arm is "scaring the children."

My usual inclination would be to educate: my son went through all his life of Sunday school with a girl who has one hand and I grew up with a guy who had had one leg amputated when we were three and neither my son nor I have suffered any ill effect.

But this week I read this post at Chewing the Fat about and elderly woman's views about ignorance vs. meanness (and its ill effects--he is such a good writer, read it if you have a chance!) and I know the truth. These folks are not overcome by their lack of experience and information, they are overcome by their lack of tolerance/acceptance.

Rodgers and Hammerstein says it best:



We see you, we know what you're doing--you can do better than this!