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.

1 comment:

mommy~dearest said...

What a great post- and yes, it is heartbreaking.