Thursday, January 31, 2008


I have written and re-written this about twenty times—thank goodness for computers. Money is a huge issue. I finally decided on a list of things I think are true. I would love to hear any additions anyone has.

My ideas about money:

• Everybody wants more!
• Money can be used as a tool to create improvements and innovations or as a barrier to prevent them. When folks want to innovate first they explore the issues and decide on the thing that is worth doing—then they seek resources. Often the first indication that someone wants to block an idea or that they have a competing agenda is that they insert the money questions into the “what’s worth doing” discussions.
• Sometimes it appears that the struggle for the disability community is that we lack money because we lack influence and we lack influence because we lack money. While the multi-million (probably multi-billion, but I don’t want to stop to look it up!) dollar disability industry employs and sustains people all around the country, this money is spent on meeting care needs, it does not build credibility, respect and influence beyond the disability community (just the way having enough money to pay your bills at home gets you through the day, but doesn’t help you build for your future.)
• Much of the non-profit community, in an attempt to build credibility with their big-business counterparts has worked to be very accountable and bottom-line driven. We must be accountable of course, but this should not mean turning our backs on the quixotic, relational, expansive ideals that are the essential mission and natural skill set of most agency founders and leaders. Not only does this dampen everyone’s spirits, but our big-business counterparts USE those very tactics everyday for fun and profit—they call them entrepreneurialism, innovation, sales and marketing.
• Pity campaigns. They have their place. If you are running a charity that provides food for malnourished children in a third world country, I think tragic commercials are fine. Pity campaigns bring in lots of money and malnutrition is a devastating, temporary condition. When that child graduates from Harvard no one in his adult life will know that that was he in the commercial 20 or 30 years ago, unless he tells them.

On the other hand I think it’s wrong for agency supporting people with disabilities in a community to paint a picture of lifelong neediness for people who use wheelchairs. You may well make lots of money in your campaign, while making it more difficult for people with wheelchairs in your community to get jobs and respect. You are richer, your constituents are not. This does keep your constituents from outgrowing the services you offer today, but that really shouldn’t be the meaning of “support.” Should it?
• The non-profit universe is set up so that everyone must compete for the same money. This prevents a lot of networking, partnering and coalition-building. I think this is a shame. Just as it is possible for me to invite you over for dinner without giving you my house, it must be possible for agencies and others to connect and interact in ways that increase the visibility, credibility and effectiveness of everyone.
• Every idea does not have to be brand new—combining ideas (like the new coffeemaker-toaster-egg cooker that my brother-in-law got for Christmas!) or piggy-backing off of others are good ways to add to your repertoire of activities without spending bundles necessarily. (I had this written when Katya Andresen posted that on her blog—serendipity!)

So, those are my thoughts. What are yours?

Saturday, January 26, 2008


Back 7 or 8 years ago I was asked to speak to the staff at a local school about Down syndrome. I started with a true/false quiz and then spent time dispelling common myths, misinformation and replacing their pre-conceived notions with accurate information. I talked about chromosomes and challenges, potential and possibilities and then I opened the floor up for questions.

I answered a couple innocuous questions and then called on a woman in the front row whose hand was up. She looked at me and said, “So, what do I do when a downy…..”

To be honest, I have no idea what the rest of the question was. My ears started to burn and I got completely flustered. A DOWNY???????? Isn’t that a FABRIC SOFTENER????? I nearly died. I could feel my face burn—my ears stayed red for hours.

I don’t know what I actually said to her—I didn’t yell or ridicule her so I think I get extra credit!

From that day to this I begin most presentations by introducing and explaining the use of person-first language. The best defense is a good offense!

Person-first language is the practice of saying “a person with a disability” or “a child who has Down syndrome” rather than saying “the disabled” or “ a Downs child.” It is one more tool in the arsenal against prejudice.

It is extraordinary, but many people do feel that because they know a diagnosis they know the personality, characteristics and even the future of a person who has a disability. I can’t tell you the number of people who told me, before my daughter was even a year old, how placid (or stubborn) she would be, about weight problems and learning issues and what kinds of life she would have—she was a BABY, for Pete’s sake!

By making things a bit more cumbersome person-first language interrupts the flow of our common thinking and helps us focus differently. Keeping the human being in the priority position in our thoughts and in our sentences makes it more difficult to make a disability the center of our relationships. As the case of Katie McCarron illustrates focusing on a diagnosis and losing sight of the human being who has it can be carried to dangerous extremes.

Author and speaker (and fellow Partners in Policymaking graduate), Kathie Snow, has written and spoken extensively on the value of person-first language. She has created a handy reference sheet and she uses a quote from Mark Twain that I just love:

“The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Or, as the Bee Gees used to sing, “It’s only words, but words are all I have to take your heart away.”

Friday, January 25, 2008


In Tazewell County, IL on 1/18/08 Dr. Karen McCarron was convicted of the murder of her 3 ½ year old daughter, Katie. According to news reports Dr. McCarron stated to the police and to the jury that she had suffocated her daughter with a garbage bag on May 13, 2006 purportedly because she had a diagnosis of autism.

Cases like these are terrifying to the disability community. There is a common perception that people with disabilities are perpetually ‘suffering’ and that this ‘suffering’ is somehow contagious to everyone around them. This perception seems to throw a switch in some folks that almost imperceptibly moves them from being human WITH someone to being humane TO them. The person becomes less important, the ‘suffering’ (diagnosis) becomes the only thing that matters.

Once the ‘suffering’ becomes the focus, alleviating ‘suffering’ becomes the goal—or obsession—and what happens to the humans involved is seen as collateral damage. Anything can be justified.

In Katie’s case the perception that hers and her mom’s suffering were monumental persisted even though she had not lived with her mom in months and it was reported by all the folks that she HAD lived with that she was happy, singing, loveable, little girl.

While daily care presents challenges for people with disabilities, clinging to the slippery slope created by prejudices, general perceptions and policies is an out-and-out battle for survival. Organizations like Not Dead Yet exist to fight this battle.

Throughout history this battle has occurred on many fronts—babies with disabilities were left on hillsides to die in ancient Greece and folks with disabilities were high on Hitler’s extermination list—and it rages on today.

In the last year there have been stories out of Portland, Oregon and Lexington, Kentucky telling of abuses in large institutions—and these are just the stories that made the news. Our taxes continue to fund these institutions despite overwhelming evidence that they are much more expensive (and less desirable) than community-based housing alternatives.

Life expectancy, health, educational gains and quality of life for people with Down syndrome are higher than they have ever been, yet the American College of Obstetrics and Gynecology came out with a recommendation last year that ALL babies in utero be tested for Down syndrome. They made this recommendation while knowing that 85-95% (depending on who you read) of all positive tests for Down syndrome result in abortion. And one of my friends was at a conference two weeks ago where it was announced that the birth rate of babies with Down syndrome in California was nearly down to zero.

In the last couple of years there have been surgeries performed on children with disabilities that would be refused to people without disabilities even if they requested it. There is an overriding belief—even in this age of amazing accomplishments in science and technology—that the challenges of disability are just impossible to address any other way. And that anything is justified to alleviate ‘suffering.’ The effect on these children of being customized for ease of portability may never be known, the effect of treating a person with a disability in ways one would never treat a person without a disability (aka dehumanizing them) diminishes everyone. It is a sign telling us who we really are.

The disability community is relieved and grateful that the judge and jury in Illinois recognized Katie’s humanity and convicted her murderer.

Her father told reporters, “If the measure of a person’s life could be quantified by the number of people that loved them then Katie, in her brief 3 ½ years, achieved well beyond all of us.”

Pictures (and context for which they may be used) here.

Wednesday, January 23, 2008

Injustice and Justice

Injustice anywhere is a threat to justice everywhere. Martin Luther King, Jr. 1963

And anyone who stands in the gap for one stands for all--thank you Dr. King.

Monday, January 21, 2008

High School Musical

OK, today I kill many birds with one stone: the letter H and learn how to add in a video--not that I will do it often, but as the saying goes, I'll never learn (how) any younger!

They just announced that all of the stars from the first two High School Musical movies are signed on for a third--this is big news at my house! For the uninitiated, High School and High School Musical 2 are two Disney movies that have taken the pre-teen and teen set by storm. They are filled with cute kids and lots of singing and dancing.

I actually liked the first HSM--there was a great message. The whole story was about kids expanding themselves beyond their stereotypes and the expectations of their friends--and how to support a friend who goes beyond your image of them. The final song, "We're All in this Together," seemed like an anthem for inclusion, tolerance and all things good.

In the second movie the cute kids, singing and dancing were still very charismatic--the story, however, was not compelling to me at all. In fact, it was almost the opposite message of the first: if you step outside of your box you will compromise yourself and your friendships...

Further than this, while the cast of both movies was very ethnically diverse, I don't think there was a single person with a disability in either film... bummer.

If anyone wants to join me and challenge Disney to include people with disabilities in HSM 3 you can send your letter here:

Richard Cook, Chairman
The Walt Disney Studios
500 S. Buena Vista St.
Burbank, CA 91521

Friday, January 18, 2008


Futurist Ed Barlow spoke at the AUCD conference in November. He is a person with a background in management and experience in healthcare, business, higher education and consulting who monitors information about the things that are happening in business, the economy, technology, etc and tries to predict future trends.

This was the first time I had heard a ‘futurist’ speak at a disability conference and it was both fascinating and disconcerting. In a rapid-fire delivery style we heard his predictions for a world that will be changing drastically and becoming very different from today.

He spoke of a world where successful people speak Mandarin Chinese and maintain what he calls a mental desktop where they track changes and trends in a number of areas—global areas—daily.

He believes that people will need the ability to assess the global environment, predict needs, learn the information that will help them meet the needs they recognized, plan and respond accordingly while being aware of all the things that are continuing to advance while they work, in order to be successful. The image I have of this is a person sitting at a console watching at least 3 screens each with different stock information flashing at the top, a running line of information going across the bottoms and a another story being presented in the middle—and watching and retaining all of this at once.

He said that by the early 1970s human knowledge was doubling every 6 years, by the year 2012 it is expected to be doubling every year.

He predicted that the workplace of tomorrow would value skills more than degrees, that far more workers will work on a contract basis and that employers will no longer offer health insurance as a benefit (he made no mention of who would.)

He feels that most people will not get a university education and that most will attend community colleges for skill-based educations. (Did I just say that people will need more abstract and sophisticated learning abilities and that their education will be shorter and more technical? Yup, that’s what the man said.)

He spoke about population trends, the aging of America, the ethnic demographics of tomorrow, the style differences between generations and different business accountability tools that he believes will be helpful. He also touched on advances in technology and learning that he expects to have a great impact on the world of tomorrow.

Listening to the presentation all I could envision was an ever widening gap between the haves and have-nots in our society. I could envision the upper echelon of society moving into the future at breakneck speed, and everyone else struggling to keep up while folks with disabilities grow further and further and further away from the benefits of participation.

Seriously, is anyone teaching our kids Mandarin Chinese? Is anyone even teaching their caregivers Mandarin Chinese? How about their caregivers’ employers?

In my opinion it will take a feat of engineering to bridge this widening gap (think Millau Viaduct!) If he is correct we have a lot of work to do to establish a role for people with disabilities to circumvent economic segregation and keep people with disabilities connected within the society of tomorrow.

I think Universal Design (applied to all areas of life), the leveling of playing fields by extensive application of technology, purposeful, planned relationship-building in our communities and strengthened connections between people who have disabilities and people in leadership are some of the building blocks we will need to succeed.

What are your thoughts?

I would love to hear your ideas! Post your ideas in a comment below.

Wednesday, January 16, 2008


I have to leave you in suspense about what the F might stand for… I am sure you’re wondering. At least I hope you are…

My youngest daughter is in the 7th grade this year. She has spent her entire school career in our district at the same schools that all of the kids in our neighborhood attend. Depending on a bunch of variables her services have looked different ways in different years, but she has always had some level of inclusive education (with supports!)

Last year there were several folks who had misgivings about her programming, but when the rubber met the road amazing things happened.

Like every other 6th grader, in Social Studies last year my daughter learned about Ancient Rome and Julius Caesar, Ancient Greece and the pyramids and the Age of Chivalry along with her peers. Her teachers and her paraprofessional were excellent about finding and crafting materials so that the information was accessible and the background knowledge has been great for her.

(A while ago my son was watching something on TV that showed the pyramids, Jenn pointed out the pyramids and told us, “That is in ancient Greece—there’s a dead guy in it, they miss him.” Without background knowledge that show and so much more would be just another discrete event that drops into her life without context… but I digress…)

When they studied The Age of Chivalry the kids were divided into teams of three to build their own society—one to make the castle, one to write the Code of Chivalry and one to make the coat of arms. My daughter was on a team with two boys from her class and she was assigned to making the coat of arms.

Just like all of the other kids who had to build coats of arms my daughter had to pick pictures out to use, use the computer to look up the symbolism of those pictures and get agreement from the team on the choices she made. Then the team had to choose a phrase from their Code of Chivalry to be their motto. Once this was done she needed to make it into a shield and write up the meanings of the symbols they’d chosen, and adhere it to the back of the shield so that she could present it to the class as part of the team.

Jenn picked out a bunch of pictures and discussed them with the guys. She had picked out a panther which was a feminine symbol. Apparently the guys agreed that since there was a girl on the team the panther would be ok, as long as they could also include a fire-breathing dragon. My daughter agreed including a dragon would be fine.

So she set to work making the shield—it was decided that it was fine for her to have help drawing the pictures, especially since many of the other kids were using computer images. Jenn colored the pictures and glued them to the cardboard shield (she also had help with the cutting.)

When she presented to the class she stood in the front of the room with her team. She read her presentation from the back of the shield and when she tripped over a word her paraprofessional, who was in the back of the room, whispered the word into her FM system so that only she could hear it. This way she could continue smoothly with her presentation (this was a coat of arms presentation, not a reading test!) The castle was great, the code of chivalry was chivalrous and the team got a good grade.

The day of her presentation she brought the shield home. My older daughter had an early dance class that day so they got off the bus and right into the car. While I drove and made a mental grocery list my daughters discussed school.

Suddenly my older daughter said, “Hey Mom, listen to this—listen to what’s on this coat of arms Jenn made.”

Here is what she read:

The cross is white. It stands for peace and protection.
The shield is blue. It stands for loyalty and truth.
The panther stands for a beautiful woman, fierce but gentle to her young.
The dragon stands for a most valiant defender of treasure.
The flaming heart stands for ardent affection. (“Just love, that’s all,” my daughter told me later.)
Its purple color stands for royal majesty and justice.

We joked that she had made us all a coat of arms. Then Amanda turned the shield over and said, “Oh my gosh, wait til you hear this!!!”

On the front of the shield (it came out backwards in the picture somehow) were the words the team had chosen from their code of chivalry:

Fight for All or Fight for No One!
No doubt about it, she had made our coat of arms!

There’s your F!

Tuesday, January 15, 2008


The Blind Men and the Elephant

by John Godfrey Saxe

It was six men of Hindustan

To learning much inclined,

Who went to see the Elephant

(Though all of them were blind)

That each by observation

Might satisfy the mind.

The first approached the Elephant

And happening to fall

Against his broad and sturdy side

At once began to bawl:

"Bless me, it seems the Elephant

Is very like a wall".

The second, feeling of his tusk,

Cried, "Ho! What have we here

So very round and smooth and sharp?

To me 'tis mighty clear

This wonder of an Elephant

Is very like a spear".

The third approached the animal,

And happening to take

The squirming trunk within his hands,

Then boldly up and spake:

"I see," quoth he, "the Elephant

Is very like a snake."

The Fourth reached out an eager hand,

And felt about the knee.

"What most this wondrous beast is like

Is mighty plain," quoth he;

"'Tis clear enough the Elephant

Is very like a tree!"

The Fifth, who chanced to touch the ear,

Said: "E'en the blindest man

Can tell what this resembles most;

Deny the fact who can,

This marvel of an ElephantIs very like a fan!"

The Sixth no sooner had begun

About the beast to grope,

Than, seizing on the swinging tail

That fell within his scope,

"I see," quoth he, "the Elephant

Is very like a rope!"

And so these men of Hindustan

Disputed loud and long,

Each in his own opinion

Exceeding stiff and strong,

Though each was partly in the right

And all were in the wrong.

So oft in theologic wars,

The disputants, I ween,

Rail on in utter ignorance

Of what each other mean,

And prate about an Elephant

Not one of them has seen!

It is so easy to do this—with elephants, with principles, with people with disabilities and with each other.

Don’t! No matter what portion of a person you are addressing at a given moment always remember that that it is unlikely that you have a grasp of their entire reality—and this goes for all of us.

Everyone has deficits and strengths, needs to be filled and gifts to contribute, fine motor and gross motor, physical and mental and social and emotional and spiritual components, qualities we can quantify and qualities we cannot.

And if ever we can’t imagine a broader, deeper possibility for all folks we encounter, we must recognize that the problem is our perception, not their reality.

Find the poem here, and the picture here.


Have you ever noticed the way some kids (not NECESSARILY mine!) will hem, haw, fuss, fume, fight, delay, drag-out, dig their heels in, whine, moan, carry on and even possibly cry to avoid emptying the dishwasher?

(Seriously, not my kids—they were a great help tonight and if they read this tomorrow I don’t want to get in trouble. I should have posted this yesterday. .. Or tomorrow. : )

The job takes 5 minutes on a bad day…it’s simple and small…it’s completely inevitable…and they would feel so much better once it was done. Yet, once they decide NOT to do it, they will carry on like I’ve asked them to scale the face of Mt. Rushmore carrying the entire 1967 Encyclopedia Brittanica in one hand, a Rolls Royce in the other and balancing a fine Belleek tea set on their heads.

And what can I really say to them? I spent years of my own childhood hanging out with my own brothers in the kitchen of my own parents’ house NOT washing the table, NOT sweeping the floor and NOT cleaning the dishes—arguing at full voice. (I’m telling myself that this is how I honed my advocacy skills—by figuring out what won't work!)

When people decide NOT to do something even tasks as simple as doing dishes can take forever, be traumatic, and lead to misery and poor outcomes. And, like kids, people who have committed NOT to do something always lay the blame for the whole sordid mess on someone else—I blamed my parents and my kids blame me.

Have you ever noticed that when people decide TO do something nothing stands in their way? Just look around at the marvels of our ever-advancing technology. There was a time when machines couldn’t fly; there was no world wide web and no way to care for premature babies or combat viruses just for starters.

Have you ever seen the movie The Right Stuff? I was amazed when I learned that NASA began the entire space program using a computer with the same capacity as the computer my sister-in-law carries in her purse (though she would have needed a somewhat larger purse back then—their computer filled rooms!) And what about the part where the crew was in trouble and the engineers were given a pile of the materials the astronauts had on hand and told to create a lifesaving solution, now! They were committed TO succeed and they did.

Prior to World War II the life expectancy for a person with Down syndrome was 9 years old. Then some pioneers decided to figure out heart surgery, others committed to developing antibiotics and our culture decided that it would be ungrateful to our veterans not to share these advances with people with disabilities. Today people often live in to their fifties or even older.

The recognition of things like hypothyroidism, celiac disease, research about learning and more have lead folks with Down syndrome to longer lives with more capacities and possibilities than people ever imagined even just a couple decades ago.

People who decide TO accomplish a task buckle down and do it—they neither accept the status quo, nor barriers, and they often even relish challenges. They accomplish not only the simple tasks, but often the huge and amazing as well. With these folks there is no blaming.

Become allies with the folks who are committed TO create advances and be one yourself. Let their spark keep yours ignited so together we can get the job done. What job? Just making a better, more welcoming world—for all.

Sunday, January 13, 2008


Recently I was in a group of parents talking about the challenges facing their kids who receive special education services, and as usual, someone in the group lamented that teachers are just not prepared to work with kids like ours. The parents all nodded their heads and then someone said (as someone always does) that this is just not what teachers expected to do when they were in school.

I nearly bit my tongue in half not to jump in with an inflammatory response—but that’s what a blog is for, right?

People say this about teachers all the time and it drives me NUTS! If I were a teacher I would be incensed!

First of all, the law that sent children with disabilities to school was passed in 1975, not last week.

Secondly, we live in an age of change.

I’m a nurse. Since my graduation back in the dark ages there have been huge changes in my field. The politics of healthcare are different, the economics are different, what we know about the body is different, the medications are different and treatments are different. Even our day-to-day activities have changed: we do all of our charting on a computer now—I couldn’t even type when I got out of school.

My friends in that particular conversation were an engineer, a business owner, and a computer specialist—fields which have also changed drastically in recent years (remember Cobal?)

Beyond this, when a nurse comes to me and says that she or he does not know how to do something we look it up together, I talk them through it and I arrange for further training if needed. If that same nurse came to me with the same issue 6 months later it is likely that there would be disciplinary action—up to and including the possibility of termination. And this is for an LPN who has had less than a year of vocational training!

All professions change and all professionals are expected to keep up. Teachers actually have an edge—they specialize in learning! In most cases teachers have kept up with their professions as much as the rest of us have.

The teachers in my district are excellent. They have masters degrees, they have mentoring and staff-development. They are completely committed to educating kids—my three children who have vastly different learning needs are all learning well. However it is not always easy.

When we nod and accept that the problems with educating our kids is that teachers are unprepared we insult teachers. Worse than this, we stop looking for the actual barriers to education. Things like administrative commitment, availability of support personnel, availability of pertinent trainings, availability of appropriate technology, political pressures and the like.

If, instead of being resigned to pseudo-problems, we addressed some of these actual needs in our schools we could create success for everyone.

Saturday, January 12, 2008


All generalizations are false, including this one.
Mark Twain

(I just love Mark Twain!)

A few years ago I worked with a patient whose goal for treatment was that she would return home. The problem was that she had several significant medical issues, lots of complications and was struggling in therapy. It was the belief of our medical experts that for her, going home would be unrealistic.

The other problem was that she and her family were immovable. We were not to lower our expectations or change our focus from rehabilitation to maintenance—she WAS going home according to them.

To their credit the staff didn’t hold back. All therapies were delivered fully, all options for equipment, medical interventions and community supports were thoroughly explored and implemented. We pulled out all the stops because we really are patient centered folks, but all the while we were shaking our heads and telling each other that we just KNEW this was not going to work.

After a couple months of this a care team meeting was held…to discuss…drumroll please…DISCHARGE HOME! And as far as I know, this woman is still living home today.

We, the experts, were wrong (and maybe just a little arrogant!)

Not only were we wrong, but if we had been a different type of folks and had not placed patient-choice above our own beliefs we could have done some serious damage. We could have enforced those beliefs and through our actions and inactions created a never-going-home reality for her—a horrifying thought.

I have a friend who has an 8 year old son who has Down syndrome and some autism-like features. At home he is a very capable little guy.

He rides his bike independently on family outings, looks up Netflix selects and starts movies on his own. He uses his communication device to communicate not just that he likes the movie Cars, but why he likes it. He also easily swims the entire length of their pool over and over, plays with his sister and their friends and reads independently, to name just a few of his skills.

At school it’s a different story: they limit the use of his communication device to expressing needs, they insist that all of his work be hand-over-hand with an adult, they punish him for behavior that the other children are allowed to do (most recently he was dragged down the hall by two adults for trying to high-five his little sister in the hallway—a common greeting between siblings, neighbors and acquaintances at that school), they exclude him from opportunities to learn background knowledge (and then criticize his literacy ability based on low background knowledge,) and exclude him from opportunities to practice more mature social skills (and then punish him for having lower-level skills) among other atrocities. They do all of this because it is their belief—all evidence to the contrary—that this is what he needs.

This child is being disabled, not by his chromosomes, not by his diagnosis, not by his capacities or skills or potential. He is being disabled by a group of people who are enforcing their beliefs about what his life should look like and through their actions and inactions are creating that reality—at least at school.

His friend’s mother was watching them play the other day and exclaimed to his mom, “Why, if he didn’t LOOK like he has Down syndrome, they would be EDUCATING him!”

This is probably accurate and it’s heartbreaking.

It is difficult to be around people who are different from yourself without stereotyping. The world is full of racism, classism, age-ism, etc, etc, etc—clearly this is a human flaw. And sadly adding a layer of expertise can, instead of expanding our knowledge of possibility, just solidify our prejudices and give us the power to enforce them.

Since expertise is not a defense against limiting beliefs, what is? Patti Digh in her blog 37 days (can you tell this is a favorite??) suggests Unlearning as a first step.

In addition to a healthy dose of unlearning I would add something I read from an article called The Least Dangerous Assumption. Written by Cheryl Jorensen, Ph.D. and published in Disability Solutions in 2005, the article quotes Special Education researcher Anne Donnellan who says, “the criterion of the least dangerous assumption holds that…. educational decisions ought to be based on assumptions which, if incorrect will have the least dangerous effect on the likelihood that students will be able to function independently as adults.”

The article goes on to illustrate the different lives that a limitation paradigm and a least dangerous paradigm could create for the same child. The comparison is compelling.

Those of us in healthcare and education are in decision-making positions nearly every day. We need to Unlearn the portions of our expertise that create limitations for others and make the least dangerous assumption.

Friday, January 11, 2008

Accommodations Part II (The Sequel)

(I know this should be B day, but my conversations after yesterday’s posts made me realize that there is a pervasive perception that making accommodations for people with disabilities is “cheating.”)

Several years ago I was asked to a meeting at my son's school because his teachers wanted to discuss moving him into a special education classroom. I was completely flummoxed. His reading grades were over the top, his math grades were average, and he seemed to be progressing in all of his academics… I knew all about my son’s learning challenges, but every grade and score that I knew about indicated that he was succeeding at that point.

I looked across the table at the teacher and started asking questions.

“Are these reading scores accurate?”

“Yes,” she answered.

“The math scores?” “Science?” “Social studies?”

“Yes, yes, yes…”

Finally I asked, “Do you think he’s not learning?”

“Oh yes, he’s learning—when we ask him about anything we have taught, he knows all about it.”

Then what was the problem? I am sure I looked as confused as I felt.

After an uncomfortable pause the teacher blurted out, “He wouldn’t have such good grades without his accommodations—he has had them all year and he still needs them. He isn’t getting any better!”

Accommodations are a confusing and even disturbing concept for a lot of people. We live in a country where folks take great pride in making it on their own and many people interpret the word “fair” to mean “same.”

On top of this people with disabilities often receive a combination of therapies and accommodations blurring the differences between them. Therapies are designed improve a person’s ability to function. A person receiving therapy is expected to progress, hopefully to the point where they won’t need therapy any more.

Accommodations are intended to make it possible for the person to function now—without changing. People often refer to accommodations as ‘leveling the playing field.” It is a tricky concept.

Fortunately for me there was a teacher at the meeting who was wearing eyeglasses.

“Do you wear your glasses when you drive?” I asked.

She assured me that she did. Phew! Just the example I needed.

I went on to say that my son’s accommodations were like other people’s eyeglasses: glasses don’t make your eyesight any better; people don’t really expect to outgrow them; and if a person drives to work while wearing them, they haven’t cheated—even if they couldn’t drive without them.

Now taking an eye exam (where visual acuity is being measured) with glasses on would be wrong, but driving the car (where driving safely is what matters) while wearing glasses is just fine.

Accommodations can be provided for everyone (for example you can use larger print in your Power Point presentation to all to meet the needs of one or two audience members.) Accommodations can also be made just for an individual who needs it (in the same presentation you might provide large print handouts just to the individuals who need that while everyone else gets regular print.)
On top of this, accommodations are not as unusual as people tend to think: I use a calendar to accommodate my inability to memorize my schedule, a car to accommodate my inability to walk to work (I live too far away), a calculator to speed up my math, and my doctor's office calls to remind me of appointments. I know I am not the only one who uses these types of assistance to succeed. Accommodations are simply the things we all do to get things done.
The confusion that exists about accommodations for people with disabilities--and some prejudice about what sorts of folks SHOULD be able to participate and succeed in society--has necessitated the formation of laws like the Individuals with Disabilities Act, the Americans with Disabilities Act and others.
These laws, far from being cheating, make it possible for all people with skills, abilities, interests and gifts--who may also happen to have a disability diagnosis--to be full participants in society. Our gender, race, religion, ethnicity or sexual orientation should not be barriers to a full life in this country--neither should the diagnosis of a disability.

Thursday, January 10, 2008

figuring things out

I have been inspired to return to this blog--hopefully on a more frequent basis--by Patti Digh at 37 days (ooooo, i just figured out how to make a link!!!!!!) Her H is for Human Rights post from the other day made me realize I need to stay on the horse and this is something I could be doing that I'm not (it is on her front page...don't know how to make a link for a specific post yet...)

I am following her alphabet series idea on the idea that it will bring me to the computer regularly... I hope you enjoyed A and tomorrow will be B...

I think I am going to go back and add links to my last post. Now if I can figure out if there are pictures I can use or if I have to get camera-proficient too....

It's a learning experience!

Accomodations and America's Next Top Model

This weekend my 18 year old daughter got completely sucked in to watching the America’s Next Top Model Season 9 marathon on VH-1. The show, hosted by Tyra Banks chooses several lovely young ladies from around the country and provides a combination of modeling training and elimination competitions so that by the end of their season there is one winner of a major modeling contract. I don’t know this for sure, but my guess is that all of those young ladies get a career boost from both the training and the exposure the show gives them.

I got interested in watching the show when my daughter informed me that one of the girls competing (Heather) has Asperger’s syndrome. It was fascinating to watch this young woman compete on the program and watching the dynamics of the folks around her as she advanced in the competition.

I applaud America’s Next Top Model for their commitment to diversity.

Probably the most fun for me was listening to my daughter’s commentary on the show. She has grown up with a younger brother who has a learning disability and a younger sister who has Down syndrome. And, while I knew she was certainly aware of disability issues, it turns out she is pretty analytical and quite passionate about them. (Yay!)

She first called my attention to the show to point out Heather and to say, “Mom, I am so excited, she is really good!” She said that she’d been worried about what angle the show would take and she didn’t want them to have a “pity contestant” or to make a fool of someone. She said that Heather had some struggles, but so did everyone and “her strengths are really strong, Mom!”

Later she called me in to comment on the social dynamics in the group. My daughter pointed out one of the contestants and said that this girl had targeted Heather from the beginning. The girl started out early in the series saying mean things to Heather and when that didn’t appear to affect her she escalated and escalated until she was finally able to rattle her. My daughter’s comment was that the best revenge was that Heather’s pictures really were better than this other girl’s.

Heather made it nearly to the top which was so exciting, but my daughter was disappointed by the disqualifying events. Throughout the series people were attentive to giving Heather the cues she needed and she responded to them pretty well. All of the girls had areas where they excelled and areas where they did not. The final tests were hard to watch though.

There was a contest where Heather was having trouble with the photo shoot (some of the other girls did 13 takes also!) One of the coordinators eventually fed Heather the words line by line, but the critique was about connecting with the camera… it was sort of a parallel accommodation.

I have run into this with my daughter at times where someone will tell me that they have been zippering her coat for her, for example, for months and she still can’t do it herself… They did something—maybe a lot—for her, but NOT what she needed. It’s an odd disconnect.

The argument could be made that in the real world of modeling no one will help her that much… I think when the intention is success there will be ways to create accommodations that work. If they had given all of the contestants their lines the night before they probably all would have done better—but the intention of that competition was to eliminate someone.

The part that upset me was in the activity called Go-Sees where the contestants drop in on a bunch of designers to show their portfolios and make a connection. They left Heather wandering around some city in China unable to find a single designer. She cannot follow maps. So her elimination eventually had nothing to do with her ability, her connection with designers, her commitment or her work ethic, it had to do entirely with her disability.

The fact that people walked past her and let her flounder on the streets shows just how well she was doing in the competition! They clearly felt very insecure.

I think eliminating her because of her runway skills or her lack of smoothness talking on camera—essential job skills—would have been fine, but eliminating her for her map-reading capabilities was ugly. Especially in the age of the GPS! And wouldn't a GPS manufacturer just love the exposure of having the show hand out their systems to their top 5 models for Go-Sees?

Oh well, she got into the top 5, if our house was any indication she was cheered by multitudes. She really is a top model with a fairytale story—and, oh yeah, she happens to have Aspergers.

Wednesday, January 09, 2008

Listen to the Canary

A few years back our school district went through some administrative changes. Within weeks of the change the parents of children with disabilities were alarmed when they were notified that the district had changed the Education Plans of all of the children who receive summer services. These changes were made without holding a single IEP meeting— meetings that are required by federal law.

As the next few years unfolded many, many more problems came to light about the way our district was being administered. The Special Ed parents knew of the problems first. We often joked that our population was like the proverbial canary in the mine shaft.

Before the invention of sophisticated chemical testing equipment coal miners would bring a canary with them when they descended into deep mines. The canary would indicate the presence of poisonous fumes before the miners’ lives were in danger. As long as the canary sang the miners knew they would be all right.

In November I heard Michael Collins from the National Organization on Disability present as part of a panel at the Association of University Centers on Disability annual meeting. He was speaking about his organization’s priority of Emergency Preparedness. Collins stated, “People with disabilities are like the canary in the mineshaft—AND if they can keep us safe, or get us out, they can do it for anybody.”

This stands to reason. If our environments are accessible for people with disabilities they are accessible for all. While steps challenge many, a ramp works for everyone. How many of us have benefited from elevators and automatic doors? And who hasn’t followed the closed captioning when trying to watch the news in a crowded airport or catch a game in a noisy bar? If it works for the people with disabilities everyone succeeds.

It also seems to follow that it if we can meet the challenge of educating the kids with learning needs, we can educate anyone. And if we can address the healthcare needs of folks with significant disabilities we are able to provide care for anyone.

The same can be said for housing, transportation, civil rights, employment and more. If our systems can succeed with people with disabilities they can accommodate anyone. The Universal Design principles that architects use to create accessible spaces can be applied far beyond the accessibility of physical environments.

In my experience this even holds true for cultural issues. For example, if people with disabilities (including cognitive disabilities) are well integrated into a community, people with other differences are usually welcomed as well.

Conversely, when our systems have problems the ill effects are first noticeable to people with disabilities as well. Like the canary in the mineshaft the experiences of people with disabilities are often the first indicators of both society’s successes and its failures.
(Thanks to my friend Kathy who made me the miniature canary in the cage in answer to my picture dilemma!)