Wednesday, July 30, 2008

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!”


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.

Tuesday, July 29, 2008

Unexpectedly Effective Advocacy #3: Yes and And

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well…

Try This Tuesday

Last time I told you to channel Colombo, today I want you to channel Glinda the Good Witch.

But don’t worry, I am not going to ask all of you to float around in bubbles and you will never have to say, “And Toto too,” in that Glinda way! This is a real advocacy skill for use with real problems—even big, difficult, snarly problems.

Let’s face it. When we go to our meetings, whether we are working on an IEP, a job idea, legislation we would like to see, meetings with our school board, etc there will be people who have ideas about what will work for us or our child that are just wrong. We want to scream “NO!!!” at the top of our lungs. We want to follow everything we hear them say with “BUT, what about….?” And really, who could blame us?

Our ‘NO’ can be a very powerful tool and putting up with the unacceptable is, well….unacceptable.

‘No’ can be the perfect word in some situations and, sometimes, taking another tack can be even more useful.

Here’s the deal:

‘No’ is a powerful word, and it is the word that EVERYONE hates to hear. Using it sets up an argument which immediately makes the other person in your conversation dig deeper into their own position—against you. This is true whether you are talking to 2 year olds or directors of special ed.

‘But’ is a negator. It is used to say that everything that was said before the ‘but’ is not actually true. (Think about that phrase, “I love you, but….” See, it IS a negator!) When we say ‘but’ we say that everything you said before, or that they said before, isn’t so—again setting up an argument. (However and yet are also negators, so don’t even try it!)

Now I can be a little feisty, and I actually enjoy a good argument now and again and there are also times when arguments really don’t work for me. First of all, the other side usually becomes more dug-in when we argue… and some people actually go into meetings with me PREPARED to argue! (Can you believe it??) Second, while I am happy to argue to advance my position, arguing to lose ground or even to stay in the same place forever does not work for me—I have neither the time nor the energy!

Channel ever-positive Glinda: Use ‘Yes’ and ‘And’ instead and watch what happens.

Imagine that you are at a school board meeting and the sports boosters are proposing expensive updates to the football field—while special education languishes.

It isn’t hard to predict the fireworks that could so easily happen and could go on for the next several months.

On the other hand, what would happen if we went with a Yes/And approach?

If a dad stood up and said, “YES, I agree, the updates to the football field are long overdue. We have kids who need football scholarships to build their futures and the district should support them in this—plus we are all big fans! AND we need to bump up the special education program because our kids with disabilities need specific services to build their futures and we need to support them too!

What has happened here? Several things:
• You have surprised folks who expected a fight.
• You have suddenly made allies of the second-most involved parents in your school (and who knows when they might be allies for you?)
• You have gotten your board thinking about possibilities instead of all-or-nothing choices. They may even come up with a way to do both, but even if they can't they are more likely to do the right thing and without blaming “those kids” and “those parents” for their decisions.

This works in a myriad of places.

When your child’s teacher says we are worried about little Doogie’s _______________ (fill in your own issue) so we are going to implement ____________________________ (fill in your own ridiculous plan that could never possibly work) so that his independent skills will improve.

Say, “YES! We are also concerned about Doogies’ ____________ and we agree that independent skills are the goal. AND we think that implementing _________________ will give him the supports to do just that."

The whole dynamic can change sometimes with these two little words AND to think “You had the answer inside of you the whole time.” Thank you, Glinda!

Picture here.

Monday, July 28, 2008

NDSC and Other News

I just returned from the National Down Syndrome Congress Conference in Boston. It was an amazing event where I was totally energized by the advances in health, education, recreation and more for people with Down syndrome.

Beyond this 3 days spent with a couple thousand people with Down syndrome and their families is so much fun. It is funny, after 3 days of this, when I go to the airport (or in this case, stop at reststops on the thruway) I look at all the families I see and I wonder where their child with Down syndrome is… The conference is a “little” out of proportion, and has become my idea of utopia!

One of the best parts of the whole conference this year was the “More Alike Than Different” campaign—for awesome PSAs click here. Inspiring!

In other news:

This was sent out by the Maternal Child Health Bureau in the July 25th issue of their e-publication, MCH Alert: Focus on Infant Mortality.

(This and past issues are available online at and


"Across 37 indicators of performance, the U.S. achieves an overall score of 65 out of a possible 100 when comparing national averages with benchmarks of best performance achieved internationally and within the United States," state the authors of a report published by the Commonwealth Fund. The report examines key indicators of national health system performance and compares national performance for each indicator against benchmark levels achieved by top-performing groups within the United States or other countries.

The 2008 scorecard uses the same framework, methods, and set of performance indicators included in the first scorecard, which was published in 2006. The updated analyses compared baseline and current national averages, as well as the change in the range of performance, in five core dimensions: healthy lives, quality of care, health care access, efficiency of the health system, and equity in the health system. System capacity to innovate and improve was also examined.

For infant mortality, the authors found that

* The rate of infants born in the United States who die before their first birthday improved slightly from 2002 to 2004 (from 7.0 to 6.8 deaths per 1,000 live births), thus returning to earlier levels. Yet, the U.S. average remains well above rates in the states and countries with the lowest rates.

* Rates of infant mortality in the worst-performing states are more than twice those in benchmark states.

* The gap between leading and lagging states grew wider in 2004, as states with the highest rates -- primarily poor and located in the South -- experienced an increase in infant mortality.

* The United States ranked last among eight industrialized countries that report infant mortality using the same methodology, with a national rate more than double that of the leading countries (2.8 to
3.1 deaths per 1,000 live births in Japan, Iceland, and Sweden in 2004).

"Overall, performance has not improved since the first National Scorecard was issued in 2006," state the authors, concluding that "new national policies that take a coherent, whole-system, population view are essential for the nation's future health and economic security."
Commonwealth Fund Commission on a High Performance Health System. Why not the best? Results from the National Scorecard on U.S. Health System Performance, 2008. New York, NY: Commonwealth Fund. Available at

So again I ask you, with all the work the American College of Obstetrics and Gynecology has to do, why are they spending one minute on Down syndrome????? (For more on this topic read here.)

This is not a rhetorical question. What justifies this??

Sunday, July 06, 2008

Port Lucie Debacle

Now that I am back the first piece of outdated disability news I want to comment on is what happened in the Florida classroom that that voted a boy with autism off their island.
I will begin with a story:

Once upon a time there were 2 best friends in a first grade classroom in upstate NY. They both knew how to read, loved books, loved words and loved sharing this with everyone they knew. Perhaps they were a tad obnoxious which was only accentuated by the fact that they were 7 (many 7 year olds lean a little toward the know-it-all side, look it up in your developmental psych book!)

In first grade these girls were inseparable, in second grade they were in classes across from each other. In one classroom the teacher was pretty awful. She called her student a show-off, made fun of me (I mean her) when she picked out chapter books to read and was otherwise generally unkind.

Her friend, on the other hand had a teacher who let her read out loud to the class, had her look things up in the dictionary and generally was nice and seemed to value her.

The first time I ever cried in school happened when our two classes were in the school library at the same time and my friend went over to the encyclopedia with the librarian to look something up and I looked at them. My teacher yelled at me (in the LIBRARY) and asked me ‘Did I think that I was going to get to look in the encyclopedia with the librarian??? NO I WAS NOT!!!!!’

After that a lot of people thought picking on me in school was a pretty good idea. Ugh! She went on to torture one of my brothers, but my parents figured her out that year and kept my other brother from having her (which amazed me—I didn’t know parents could DO that!)

The moral of the story is I was not picked on because of who I was—my friend was much like me. I was picked on because my teacher was mean. She had a host of approaches to choose from—she chose nasty. She could have chosen nice—my friend’s teacher did…

The boy in Florida was not excluded because of his diagnosis, or even because of his behavior. There are thousands of teachers in the country who do not vote children out of their classrooms—no matter what they do.

When you read follow-up stories you realize that the teacher and much of the world still does not know what went wrong. I think I can help.

Apparently there were behaviors in the classroom that were difficult and were disrupting learning. So the teacher called the class together to name the problem and strategize solutions.

So far, so good. This is often a good strategy with groups that have gone sideways.

Where it turned into Lord of the Flies was in the next phase:

Here the teacher could have pointed out that all of these feelings and actions and drama are interrupting learning and then laid out a plan for ‘what we will do in our class when these dramas occur’. Then she could have said that the class would meet again next week to make sure things were working better, but if they weren’t we will fix the plan until we get it right. This would make it clear that she was in charge of the dynamic and it would make kids secure that everyone belonged AND that she was going to handle the problems that were upsetting to them.

But no, from here the teacher blamed the whole problem on one of the students and had the kids turn against him and vote him out.

The teacher is just lucky that she did all this at the end of the school year, rather than at the beginning. According to studies in education the formation of the learning community is one of the strongest predictors of the academic success of the students in any class. Their learning community became an incredibly dangerous place to be.

Teaching the children that the way to be “in” is to make sure that someone else is “out” leads to a lot of insecure kids scrambling to avoid the same fate—some will duck out of sight, others will aggressively seek to keep the negative attention on some scapegoat to protect themselves. These kids’ future teachers will be contending with this dynamic from them for years to come.

I will not insult the thousands and thousands of teachers who handle problems like these and more in thoughtful and effective ways by saying “teachers are just not prepared to handle these things.” Universities have been teaching and research has been supporting inclusive education practices since PL 94-142 was passed in 1975.

Most teachers are NOT 35 years behind in their profession!

[And can you imagine a computer engineer facing some new operating system saying, “I really can’t do this, when I was in college we learned Cobal, or Basic, or MS-DOS???? Everyone’s profession has changed since they graduated!

But I digress! (that’s for you Barbara!)]

I am sad for this boy and for his classmates who learned something about the way the world sometimes works--they could have waited a few more years to learn this lesson—some innocence is lost. But I am really glad that in this day and age people have the ability to name these situations as abuse and protest when they see it.

Kudos to Alex’s mom and the millions like her who are standing up for their kids all over the world!

Image from here.

Saturday, July 05, 2008

I'm Baaaack

Whew!!! I am back. It has been so hectic around here. We have had the end of school busy-ness, a graduation and my hours at work changed—I have lots to say about the state of disability I just don’t know when to say it…

It looks like I have a bit of time for catching up so I’m gonna try… hope all is well with everyone.

The picture is my daughter's face, she is wearing her graduation mortarboard!