Saturday, May 23, 2009

Disability and Difference

The scene is a playground at a school. A teacher who recently had a baby has come back to school to say hello to her class of 5 and 6 year olds.

One boy doesn't look up from his legos when she arrives and only barely grunts with acknowledgement when another adult draws his attention to the teacher.

Another boy runs from across the school yard, gives the teacher a hug, examines her now-smaller belly and shouts, "I'm SO proud of you! You had your baby!"

Which of these boys has a diagnosed communication disorder?

You see the twist coming, don't you?

The second boy in the story is Ben. A child who has an official diagnosis that states that he has a disability: "a marked impairment in social interaction," that interferes with his ability to function in a educational or social environment.

The first boy is one of his typical peers.

I'm not telling you this story because I dispute Ben's autism spectrum diagnosis, or believe that the other boy has some kind of undiagnosed disorder.

I simply want to acknowledge the murkiness and complexity of having - or not having - a diagnosis, a label, or the status of "disability" attached to one's differences.

I do believe that Ben's differences are real and what he has is a lifelong condition, not a developmental phase. As our school psychologist reminded us recently, "It gets A LOT better, but it never goes away. And the impact changes across one's lifespan." Ben will probably struggle his whole life with stuff that is pretty basic for most people.

But like the story demonstrates, his diagnosis does not and cannot define him, and he continues to frequently defy its boundaries.

For Ben, the degree of his challenges - his disability - is directly related to the expectations and norms of the environment in which he operates. And the idea that he has a disability may say as much about his environment as it does about him.

This importance of context and environment is obvious to most parents, regardless of whether their child veers in an atypical direction or not.

For example, Ben's behavior issues are rare to non-existant in his language enriched classroom with a high teacher/student ratio and adaptive teaching methods.

On the other hand, he has more frequent instances of aggression and acting out in the classroom with double the number of children, less structure and a vastly different teaching style.

So does he have a "disability" in one environment but not the other? No. But it's possible to minimize the effects of a disability by changing the nature of an environment.

For example, what if elementary school classrooms had seven or eight students in a classroom rather than 30?

What if every teacher received rigorous training in adapting curriculum to a variety of different learning, communication, sensory needs?

What if every child at every level had age-appropriate education focused on social and emotional development woven into the day and into the curriculum? Imagine if this had as high a priority as reading and math and - gasp - standardized tests.

I suspect that in this kind of environment, it's less likely that Ben's differences would be viewed as a disability or that he would need "special" education.

I suspect a lot fewer students, especially those who perch on the mild end of the spectrum, would need "special" education.

Maybe there are so many students who qualify for special education services and get labels attached to them partly because our public school classrooms and teaching methods are often a poor match (if not intolerable) for too many children.

What if we could improve the environment for all children - for those with official diagnoses and for those without, for those who struggle for all sorts of different reasons that don't have a corresponding checkbox on an official form. Not just for kids with disabilities but for the countless kids who who find a way to muddle through and get by, but possibly never thrive.

Where does the disability reside? With the person who manifests differences, or with a system that's too rigid to accommodate them?

6 comments:

jaki said...

I *knew* Ben was the second child...I knew it!!! Thought provoking column, as always.

1stdaughter said...

Very thought provoking, and something I've thought a lot about as our son Jace prepares to entire preschool for the first time this fall. I wonder how many "labels" have been given when all a child needs is more hands on direction. I've found this is the case when we have addressed "issues" that have arisen in Jace's life. The more specific attention we give the better the result. But isn't this how it is for all kids and I would venture to say even adults? We all thrive in situations where we are cared for and directed in an individual way.

We all need to be loved and when we truly are (the way we need it) then we are able to overcome the obstacles in our lives.

Rebecca Gunn said...

I have noticed this myself

At school I struggled a lot: because of my Dyspraxia I struggled to learn some things but was amazingly great at other things like drawing or reading. Though the school always told my parents it was that they needed to do a better job at home more than it was any learning disability

When I was 9 the school told my parents to get me math tutoring because I really was bad with numbers. A really nice old couple used to tutor a small group of us and they used visual imagery and rhymes and I learned so much more from that approach than I did from the classroom experience!

I got diagnosed with Dispraxia at last during last year and started University and Uni is much better equipped to deal with my needs more than school ever was. I get aid for equipment: a student support assistant and a place to go if I have any problems.

My tutors are also understanding and approachable too. Whereas I used to feel in school that I was being a bother to a teacher to ask questions or ask for help.
I have gotten A's and B's and have never felt more sure in an educational environment. My friends know about my condition and why I have an assistant but they accept me as I am. Refreshing after years of kids calling me "Weirdo" at school.

Lowcountry Mom said...

Christa, just found your blog and I love it! Definitely will be back to read more. Ben sounds a lot like my son, who is 7 1/2 and (from your description) is just about in the same spot on the spectrum. I appreciate your insights and your perspective.

Penguin Lady said...

You've just described my day. My son goes to Currey Ingram Academy in Nashville (curreyingram.org) - which is the "ideal" environment you describe. He absolutely thrives there - with classes in pragmatics, small classes, OT for fine motor in the classroom and small class sizes. Yet, he started a "typical" summer camp today. My "operating instructions" handout I wrote and gave to the camp resulted in him being assigned an aide - which was fine, I imagine - but the bigger question I walked away with was "Wouldn't ALL of the kids in the group benefit from a visual schedule? Or a better counselor-camper ratio? Or a discussion of the steps in each activity?" There was Will, looking people in the eye, greeting people, even shaking hands with new friends - and he was the one who needed "help" - thanks to this "disability." He got in the car and said, "Mom, camp was great. Why was that lady my friend today?" Sigh...

linda J. said...

What a lovely post. When are you going to write a book?