"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....

Ableism: C'mon People, We Can Do Better Than This!

Ruth at Wheelie Catholic posted this story this morning. Katja posted this story this weekend...

Is there an epidemic?

Last week I was grocery shopping and the checkout guy was a wheelchair-user. The lady in front of me got in line without noticing that. Once she did notice she started fuming about how she did not need this.... etc, etc, etc...

I offered to let her out of the line, but she said "NO, why should I change???"

I didn't say another word. This gal was a volatile mess... and I had a stomach ache (wimp, I know... I admit a fear of bullies.)

When she got up to the line she was quite rude to the kid, but my entire plan was to say supportive stuff to him when it was my turn...

Until she blamed him for not keeping track of her charge card (really loudly) and then she found it in her purse...

Then I said--pretty loudly myself-- "So, that was YOUR mistake then??"

She did not answer, after she left the kid thanked me, and so did the folks behind me in line... but I knew I should have said something so much earlier.

Ableism is a belief that the able-bodied are superior to those with disabilities. It is shocking how many people believe this--and how many act on it.

People like to believe they are superior?? They tell themselves people with disabilities are taking something away from them?? People like feeling powerful over other people??

All of the above???

I give up... I don't know what it is.

It is ugly and it is dangerous.

How do you think this study makes me feel? How does it make you feel?

I resolve to speak up more? Will you join me?

Picture from here, by Tim Malone

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!

Celebu-WHAT???!!!! Are you KIDDING me??

Apparently this week marks the release of the new book Celebutard by NY Post writer Andrea Peyser. A look inside the book at Amazon reveals that the author constructed the title by putting together the words CELEbrity and deBUtante. She added the suffix "TARD" because she wanted to convey to the world her heartfelt appreciation and respect for celebs and debs and her inestimable esteem for people with developmental disabilities and their contributions to our culture.

NOT!!!

She used the suffix "TARD" to convey her utter disdain for celebs and debs AND people with disabilities.

She intends not only to perpetuate the undeserved negative stereotypes that people with developmental disabilities contend with , but to profit from them.

I have to tell you, it makes me sick. Can you imagine if she'd used the final syllables of the "n-word" instead? Why didn't she, do you think??

I am curious what her friend Bill O'Reilly, who conceded on the air this week that his use of the "r-word" had been pretty tacky, will have to say...

You know what would be GREAT?? If Sarah Palin weighed in against this travesty...

Let's not wait for Bill-O or Sarah P. to do the right thing. Go to the Celebutard website, go down to the bottom to the contact us section and share your opinion. Also, if you happen to live where the author is appearing, show up and bring your "Words Hit Like a Fist" cards and T-shirts. Hers cannot be the only voice the country hears about disability.

Edited to add this idea someone shared: Leave a review on Amazon abut the book...

Also, it was announced this week by actor John C. McGinley (Dr. Cox on Scrubs) that March 31, 2009 will be the First Annual End the R-Word Day.

Dr. Cox, Andrea Peyser needs a housecall--and I'm not sure it can wait until 3/31.

Here's some food for thought .

Ableism: Snow or Sibling Revelry??

Scenario #1: A conversation during snow shoveling.

Me: “I am so sick of the cold and the snow.”

My Daughter: “Me too, let’s boycott!”

Can you picture us pulling on our shorts and sandals and marching on the weather bureau?

Of course you can’t!
• It’s ridiculous.
• It won’t help.
• The problem doesn’t warrant it (snow is one of the two problems in the world that actually will go away by itself if you ignore it long enough!)

Scenario #2: After dinner clean-up.

Three teenagers jostling and wrestling all around the kitchen getting in each other’s way and arguing. All three end up in one corner of the kitchen wrestling over the same dish towel, youngest child being both squished and stepped on.

Youngest sibling delicately whispers to the others, “Pardon me, elder siblings; I seem to be standing under your feet.”

Can you imagine ANY younger sibling using this tactic? Can you imagine any older siblings responding to it???

Of course you can’t!
• It’s ridiculous.
• It won’t work.
• The situation is urgent and those who hold the power are not going to give it up because of a whispered suggestion from their victim!

She needs impact NOW. She needs to yell to be noticed. And once she has their attention she needs an effective strategy. She could change the meaning of the situation (get everyone laughing); convince them that they are causing problems they don’t intend (like they are hurting her); or invoke higher power by calling “MOM” who will make the other two finish the job without her if they don’t stop (she may have other choices as well, but those are the 3 favorites!)

There are people in the disability community who believe that ableism is a Scenario #1 situation, That, like snow, it will go away if it is ignored.

I do not know why they believe this.

Throughout history when babies with disabilities were left on hillsides to die, treated as court jesters and more right up to legion 2009 examples (and it’s the 2nd of February, for cryin’ in the sink!):

• The official recognition that Washington is not accessible prompts the inaugural committee to tell people with disabilities to avoid the inauguration (rather than improving their plans….)
• Chris Matthews in reporting on the inauguration draws disparaging inferences about wheelchairs and the status of people who use them (throwing in Dick Cheney to amplify the insult!)
• Saturday Night Live attempts to lampoon Gov. David Paterson using ‘blindisms,’ not once, but twice (yep, they did the same stupid stuff again this weekend—in spite of being asked not to by the American Foundation for the Blind.
• 20 years after the ADA the country is not accessible, 35 years after education laws were passed (PL 94.142 which later became IDEA) education for kids with disabilities is still being debated….
• New Hampshire is considering legislation that will categorize conditions where people are not dying as terminal to make it easier to assist them with suicide (and deny insurance, I’m sure.) Society believes better dead than disabled even though people who have the disabilities repeat and repeat and repeat that they like their lives…

I can add examples to this list daily--there are also daily advances, but they are not enough to cancel out the ableism.

Ableism is not going to go away on its own and it is keeping people with disabilities from education, jobs, community inclusion, and is even endangering their lives. We can’t ignore it and hope it will melt away. We need to get the world’s attention. We need to change the negative cultural narratives about disability, we need to convince the powers that be that they are creating outcomes they do not intend, and we need to engage the powerful on our behalf.

Ready. Get set. Go!!!!

(Note to Gov. Paterson: You need to develop some flamboyant mannerisms or start wearing bowties like Bill Nye the Science Guy or a scary hairpiece—or is it hairdo—like Blagojevich so that SNL has something to riff on. Clearly they are not going to come up with anything on their own!!)

Ableism, Accessibility and the Inauguration: Doing the Math

When I was in high school I have to admit I was not a great math student. I faced new concepts (and some old ones) with a combination of confusion and intimidation that blocked even the faintest possibility of success. Finally, I stayed after school for extra help (though I held out no hope) and the teacher I worked with turned out to be great. She taught me a principle that made it possible for me to learn math, and that eventually became a foundation for logical thinking.

She told me, “If a principle works, it works for any number.”

Then she would have me do the complex equation with the number 2 or 5 until I understood it. In this way I learned things I had managed to miss completely for years… and I eventually passed the class. (Frankly, my dad probably also told me this 10,000 times, but he was my dad. I didn’t hear it when he said it! Sorry Dad!)

Extrapolator that I am, today I apply this principle way beyond math. When faced with a complex question of ethics I simplify it for myself by applying it to other groups or situations to see if I understand it better. It is not a perfect razor, but sometimes it helps.

So, let’s talk about the inauguration.

Carol Florman,of the Joint Congressional Committee on Inaugural Ceremonies announced to the press early in January that the inauguration would not be accessible, transportation would be shut down and travel would be long and obstructed so those with disabilities, small children and the elderly shouldn’t come…

What other minority should we substitute into this equation? Let’s think about African American’s…

Would it be acceptable to tell African-American citizens that the inauguration would not be safe or appropriate for them so they would be better off staying home? Cilla at Big Noise points out that the Disability Rights movement has many lessons to learn from the Civil Rights movement of the 1960s—what have we learned about exclusion and segregation? Could we tell African-Americans that they would be better off watching the inauguration in a place better-suited for “their kind”?

As much as I love our new President’s disability platform, I find the ableism and inaccessibility that were evident at the inauguration terribly upsetting. It feels as if, in our administration, the right hand doesn’t know what the left is doing…

(And can you tell me, after 20 years of the ADA, why our nation’s capitol is NOT suited for people with disabilities??

And why, when becoming accessible is required do disgruntled folks blame “those people with disabilities” rather than the business-owners and policymakers of the last 20 years who should have taken care of the problem years ago?

Sorry, I digress!)

When I discussed the inaccessibility of the inauguration with folks they told me I was unreasonable… whining even.

I was told there had only been 2 months to plan (don’t inaugurations happen every 4 years??) and that “those people” should content themselves with the TV since many people weren’t going (people who made that choice for themselves, may I point out?)

Then, at the inauguration itself former Vice-President Dick Cheney was using a wheelchair and commentator, Chris Matthews remarked that his wheelchair use was a metaphor for his lowly status in the eyes of Americans….

WHAT????

A wheelchair is a tool used for mobility. It makes no implications whatsoever about the status or capacity of its user. None.

And let’s try our substitution exercise:

Which minority could we put down in that way without consequences? What if something about Cheney reminded the announcer of the GLBTQ community and the announcer used THAT as a metaphor for something negative?? An announcer making that sort of remark would have to apologize—he might even lose his job.

And the fact that these glaring gaffes are either invisible or seem perfectly reasonable to most people in 2009 is utterly appalling. This is the living breathing definition of ableism among us.

So, the inauguration is in the past. What now?

Join the folks at the AAPD in demanding an apology from TV announcers who make ableist remarks. Thought while speaking is required. Ableism is as demeaning as any other ism and must end.

Write to Obama’s administration and ask them to gather their inauguration committee and some folks versed in Universal Design and use this fresh inauguration experience to design accessible events NOW. So we never have to have this conversation again.

We can do better than this, I'm just sayin'.

Gary Pressley has some thoughts on this subject as well. See here, here and here.

Tropic Thunder, Tidal Waves and Words Hit Like A Fist

What the disability community decides to do or not to do over the next 3 days will determine the quality of life of people with disabilities—all disabilities for the next 30 years. If you think I'm exagerating check here and here.

This week your agency doesn’t matter. Your diagnosis doesn’t matter. Your philosophy does not matter.

The only thing that matters is whether you can get beyond all of the things that divide the disability community and DO SOMETHING THIS WEEK a in response to the poison that the release of the movie Tropic Thunder is about to spew on us.

If you put your agency, your diagnosis, or your philosophy first—in any way—we will fail.

We have the potential here to gain more than we ever have as a community or lose more than we ever have and it is up to US.

Here is the Terri Theory of Making Waves (I do this as a presentation and it there’s a lot more to it, but this is the condensed version because time is short.)

Visualize this wave starting as a splash and working its way up, higher and higher—I envision it getting wider and broader, til it becomes a tidal wave.

There are 3 essential components:
• Presence
• Credence
• Influence

These components interact and expand the others—without all three nothing changes.

Presence: Be there. Be visible, in, among, belong, be seen, be heard.

Credence: This speaks about the KIND of presence you need to have. You must build something with your presence—poor presence will set your cause back. To achieve credence you must be:
• Assertive. This means seeing yourself as an equal among equals—there is no begging for crumbs or attention or anything else. Assertiveness is respectful and expectant (rather than demanding.)
• Relentless/tireless. Presence to have credence is not sporadic and it does not quit because it meets resistance. It is constant—this matters as much as what you do.
• On message. Your presence must send the right message. You must show by your presence that people with disabilities are individuals with gifts and strengths and rights. As Andy Taylor told Opie: “Act like SOMEBODY!”

Influence: This means act like a leader. In disability we tend to stop at education—education is not leadership.

This will come as a shocker to most people—every time I say it somebody faints, but:

Education does NOT change behavior!!!!!!

If it did no one would smoke, drink or overeat—and I would exercise! Someday I will expound on this, but not today.

Leadership means grabbing your presence and your credence and stepping into the fray to cut out what does not belong and build in what does. Education is one tool—sometimes a good tool, but like any tool it is not right for every situation.

If we walk up to movie goers and give them a lecture about why this is wrong or about the details of disability we will fail. We have lots of educating to do, but NOT today.

Leveraging the power of an agency, or group of agencies can also be an incredibly useful tool for influence. But if we walk into next week’s movie opening as this agency or that agency, or this diagnosis or that diagnosis and we do not unite EVERYONE ELSE we will fail.

Today the tool we need is UNITING, not unity—-we do not need to be the same this week. We need a common banner, a common cause and as much diversity of response as we can ignite. Put your logo at the bottom of your correspondence on this topic along with everyone else’s—people will notice (I for one will be impressed!)

We need small actions and big actions with a common title and we need to leverage those using whatever tools we can find. And we need to do it NOW.

Words Hit Like A Fist—Stop it. NOW!

This would be a great banner. Everyone do something.

Organize a rally at the theater—carry that banner, send a press release, take some pictures or some video and post it on the internet under the title Words Hit Like A Fist. Write a letter to the editor--of your paper, of a national publication--and post it on the internet.

If writing press releases is too cumbersome get yourself some of those invitations they sell at the store and fill those in and send those to the press--doing something is what matters, accept no barriers.

Go to the ball game instead of the movie—wear a t-shirt that says Words Hit Like A Fist. Send a press release with that phrase in the title and show what real folks with disabilities are doing—rather than going to this movie. Again post a picture or some video on the internet with the Words Hit Like a Fist title.

Organize a letter writing campaign—get together, send the letters, take a picture… you get it…

Send an e-mail to your church leadership, to the parents that you know...to your family... Leave no one out.

Can your kids make a supportive video? Can they put something on Facebook or My Space? What else can you think of?

Your actions by themselves are good. Supersize your actions. Using the internet, using the same banner, using press releases, or whatever you can think of, will give our presence credence and influence.

So, what are you going to do? The future is ours. We can build it or watch it disappear.

If we act today, to misquote a little Shakepeare, this movie will become ‘a tale told by an actor full of sound and fury, signifying nothing.’

If we do not act today this movie will poison the culture in which we live—like nuclear fallout.

As for myself, I am blogging, I am sending out action calls locally and nationally, I have talked to a local t-shirt maker who can make me 100 t-shirts with the “Words Hit Like A Fist” on it by Wednesday and she will sell them at cost which is $4.50… I am sending out a press release from our parent group about an activity we have scheduled this week…and whatever else I can think of…

Is it a lot? Yes. Is it a lot of scary drama? Yes. Am I too busy for this right now? Of course I am.

But you know what? What I invest over the next 3 days will matter to people I love for years.

I am sucking it up, as the saying goes.

Will you join me?

Picture from here.

Thunder Tropic, Censorship and Other Reflections

First: If I remember my 8th grade history right, Abraham Lincoln said, “I may disagree with what you have to say, but I will fight to the death for your right to day it.

I just love Abe Lincoln and I agree with him.

Censorship—the governmental restriction of expression and media—is wrong. Freedom of speech is an essential right which should not be curtailed in any way.

Influencing people to change their personal expression is NOT censorship. It is LEADERSHIP. No rights are stepped on by asking people to choose to ban disrespectful language from their own lexicon out of respect for us.

Leadership from the disability community may be unexpected because our focus tends to be internal, and it may be unwelcome by those who do not wish to change, but I think it is great.

Second: It happens all the time, something goes crashing to the floor and my kids yell, “But I didn’t mean to!”

And all the time I point out that they are responsible for both the intent AND the outcomes of their actions. I am happy—delighted even—that their intent was never to wreck, damage, or injure, but if those things happen anyway they still are responsible both for apologizing and making amends.

(See more of my thoughts on friendly fire here.)

Third: FYI: An actor does NOT have to accept stupidity, being a total imbecile, etc from themselves to portray someone with a cognitive disability. This is NOT what it is like to have a disability.

It appears that many people believe that this is what actors must do to portray these roles, so the disability community should understand this scene in Tropic Thunder.

Well it isn’t, so we don’t.

No wonder so many portrayals of people with disabilities in movies are so bad.

And just when I was at my most frustrated trying to get all of this into one post Dave Hingsburger posted his answer: The business cards you see posted above!!

Love. It.

The idea is when you have been punched in the face (or the heart) with the R-word, give ‘em a card. They aren’t being copyrighted so anyone can make themselves a stack.

Thank you to Dave and his co-workers for this brilliant response.

Go to Dave's post and see the words on the back of the card, here.

Other bloggers weighing in on Tropic Thunder:

cripchick

Wheelie Catholic

Special Ed Law Blog

Sweet Perdition

Whose Planet is it Anyway

Blog[with]TV

Mama Bear and Tropic Thunder

When my daughter who has Down syndrome was a baby (14 years ago!!!) I was puttering around my house one spring day with the windows open and there were neighborhood kids out running around. In the midst of my spring-clean I heard it. Some kid in my neighborhood called some other kid a ‘retard.’

My poor husband was completely unprepared for the depth and breadth of my reaction—heretofore he had thought of me as a mild-mannered woman! Fortunately, he sat on me until my urge toward violence passed. (See my post below for the benefits of avoiding violence!)We found out the true meaning of the mama bear instinct.

Obviously kids get insulted in their lives, but my kids were so little I hadn’t been through that yet—and they went after my BABY….

Now, of course, they weren’t going after my baby. But they hit her and they hit me too with their stray word-bullet. And frankly, I think getting hit by stray bullets is just as painful as getting hit by the ones meant for you. Friendly fire is an oxymoron if I’ve ever heard one.

The assault on people with cognitive disabilities has gone on always and people have no idea the harm they do.

As I have mentioned here before (a few times!) I am a Partners in Policymaking graduate and a few years ago there was a seminar in our state capitol for Partners graduates. We had a nationally-known speaker who has been a disability advocate his whole life. He talked to us about how to approach legislators. I thought he was great.

During lunch I found that several of my fellow attendees were EXTREMELY upset. The speaker had begun his talk with a summary of the history of disabilities and used words that absolutely broke the hearts of my friends. He was only trying to illustrate that peoples’ efforts had led to progress, but they had thought they were in a safe place and weren’t prepared to encounter name-calling. They were totally stuck on THOSE WORDS.

I tried to explain that the speaker had used those words to show what didn’t exist anymore.

My friend Jason looked me in the eye and said, “That’s what you think!”

The stories that followed made me sick. No one’s child deserves that treatment—no one at all deserves that treatment.

People with cognitive disabilities learn and think differently than average. I have encountered wisdom, insight, compassion, humor and strength in people with disability diagnoses—and the reverse in a good many folks who don’t have diagnoses.

There is a movie coming out this August called Tropic Thunder that bandies the R-word all over the place and describes the experience of having an intellectual disability as being “moronic, stupid, dumb and imbecilic.”

This movie is geared toward teenage boys and has big-time actors. This characterization is buried in lots of crazy antics that teenage boys love.

Do you think these young guys will pause and ask themselves, “Is this really an accurate portrayal of intellectual disability?”

I don’t.

I think they will carry on the tradition of misjudgement and mistreatment of people with disabilities—including their peer, my daughter. Then she too can have stories to tell that will make you sick.

I think they will grow up and make movies just like this one.

So to Ben Stiller, Robert Downey, Jr. and Jack Black—and their many funders and backers I say, “Thanks guys.”

NOT!

PS: Changing language is not enough to fix the world, but language IS one of the components of oppression (just ask anyone from any religion, race, ethnicity, sexual orientation, or gender who have been oppressed—do any of THOSE words show up in this film???) ALL of the components of oppression must be dismantled—language is as good a place to start as any.

PPS: There was another movie a few years back that combined humor and disability that I actually liked. The beginning was really rough—the characters started out just where Stiller, Downy and Black are now—but the characters in this movie evolved and the characters with disabilities were shown as whole individuals. Teens that I saw the movie with also evolved… so I liked it. Watch The Ringer and see if you agree.

Picture from here.

Sensitivity Story

Something I read on Equal not Special got me thinking about those moments when some clueless soul says something totally insensitive about disability and what you say back to them…

Back when my daughter who has Down syndrome was nearly 2 I took all three of my kids shopping with me one afternoon. In one of the stores, while I was paying for my purchases, my darling daughter threw a wild tantrum in her stroller because she wanted to me to pick her up. I ignored her wailing while I wrote my check (no sense giving her the message that screaming is how you get the world to stop—it was only going to be a minute…) The salesclerk who was working with me was quite efficient and pleasant.

Unfortunately she was not working alone.

Standing next to my salesclerk was another store employee who clearly had nothing to do, so she was watching me pay. In the middle of my transaction this idle clerk pointed at my screaming child and yelled, “What’s wrong with HER???”

“Oh, she’s just mad. She’ll be ok once I stop paying attention to you and get back to her,” I answered.

“No,” this lovely woman said, “I mean what’s WRONG with her?”

“She’s nearly 2—she has temper tantrums. Kids are like that,” I said.

“But she’s SPECIAL…..:”

Just then my clerk handed me the sales slip.

I didn’t say a word.

I gripped the handle of my stroller with both hands, and with my 5 year old daughter and my 3 year old son clinging to each side of the stroller for dear life, we ran out of that store and halfway down the mall.

While we were tooling along, my son looked up at me and said,

“Mommy, pant-pant-pant, why pant-pant are we pant-pant-pant RUNNING???”

I looked down at him and, using my absolutely sweetest voice, said,

“We are keeping Mommy out of jail, honey.”

Yeah, that’s not the funny part.

The funny part is that for months after, whenever my son really got running hard he would look up at me with his sweaty little face and say, “Whew! I really kept you out of jail today, Mommy!”

Sigh….

I would have liked to say something perfect--perhaps even educational, or at least corrective (or sarcastic, let's be honest!), but this was the best I could come up with that day.

The good news is, I did not, in fact, end up in jail--

Which is always a plus!

Picture from here.

Prenatal Diagnosis of Down Syndrome: Blogging Against Disablism

Goldfish is hosting the annual Blogging Against Disableism Day--well, actually it was yesterday, but latecomers can be included--so here you go--stop over there and read up on the issues from all kinds of perspectives!

Sometimes when I give a presentation I use what I call my “bunch of balloons” format. I give the audience several bits of information which, taken singly, seem disconnected, but when held together in a bunch lifts us all to a conclusion.

Permit me to use this format today:

The first group of balloons we will take hold of will be about Down syndrome:

• Down syndrome is a genetic condition caused by an extra copy of chromosome #21 in a person’s cells.
• With advances in surgery for heart and digestive disorders, and the recognition of the role of hypothyroidism in Down syndrome, people are healthier and functioning at a higher level.
• The life expectancy for people with Down syndrome used to be 9 years, it is now 55, with some people living much longer. (PS: I don’t find this as worrisome as some folks do. I think the timing for this advance is perfect. With the aging of the baby-boomers our whole country is about to become EXPERTS at working with an aging population with increasing levels of disability—the work we have done creating accessibility for people who already have disabilities is laying the groundwork for successful aging for our entire population those with Down syndrome included!)
• It used to be believed and taught that people with Down syndrome could not read. Today we know that literacy at some level is an expectation for people with Down syndrome with decoding as a relative strength. It is suggested that many people will be able to read at a 4th grade level and some will read at above an 8th grade level. (Many newspapers are written at a 4th-6th grade level.)
• Today people with Down syndrome are going to school, getting jobs, getting married, buying houses and contributing to their communities in ways never thought possible just 40 years ago.
• Siblings of people with Down syndrome when studied report overall positive experiences.
• Disabilities that exist from birth happen in about 1 of every 33 births and among those Down syndrome is termed a low-incidence disability.

I could go on, but you get the picture: there are many indicators that the health, well-being and quality of life for people with Down syndrome have improved greatly in the last few decades.

Do you have these balloons tied around your wrist?

The next few balloons will be about something called Healthy People 2010.

Healthy People 2010 is a group of health goals agreed upon by the leaders in medicine and in the government. It lists many, many indicators of good health. These indicators guide funding and research, and they are analyzed and measured regularly to assess the country’s progress in health care.

The recent data shows that among many other things the following indicators are not improving or are actually getting worse:
• The number of preterm babies is up.
• The number of low birthweight babies is up.
• The number of C-sections—particularly those termed ‘convenience’ is way up. (Except in an emergency, risks of surgery are considered greater than risks of birth.)
• Infant mortality is improving, but remains higher than many other nations
• Maternal mortality is up.
• The racial and socioeconomic disparity in these figures is appalling.

(The dataset for these can be found here.)

(PS again: Because Down syndrome is a low-incidence disability it does NOT contribute significantly to these numbers.)

Got these balloons tied on?

The indicators on the quality of life for people with Down syndrome are improving immensely and the indicators on maternal and infant health are not.

Now, let’s talk about current events:
• Twice in the past 12 months a respected group of physicians has asserted the position that ALL pregnant women should undergo first trimester testing to rule out Down syndrome. (PS yet again—this of course was very powerful marketing of Down syndrome as terrible—a position obviously not supported by current data.)
• Studies show that physicians disclosure of Down syndrome to pregnant women with a negative bias (and you don’t even need the studies to surmise this: the abortion rate after receiving a prenatal diagnosis of Down syndrome is 85-95% depending on who you read—if the information were unbiased wouldn’t the rate be MUCH closer to 50%??)
• These announcements about prenatal testing for Down syndrome made the evening news. I have not heard any such announcements about initiatives on decreasing the rate of C-sections…or improving maternal and infant health.
• Brian Skotko, MD, MPP, wrote a letter to the editor to the Journal of the American College of Obstetrics and Gynecology giving broader and a more positive perspective on Down syndrome. The journal declined to print it. (Read it here,)

Are you airborne? I am.

Frankly, I think some physicians and organizations have a lot of nerve. With all the real work they have to do in their field, I think taking on Down syndrome is a disgusting misuse of time and talent.

The conclusion that I am lifted to is that Disableism definitely exists and it exists in very influential places. It is unbelievable and it is nasty. And if Disableism is so pervasive in an area where there is as much success as there’s been with Down syndrome, no one is safe.

So, who’s next?

Anti-Ableism Videos

Part 2: (has a moment of adult implication--worth it, I think!)