Thursday, April 14, 2016

Significantly Disabled: A Funny Story

Want to hear something funny?

I've been doing a lot of advocacy work in my community around Inclusive Education. It's a subject that deserves a post of it's own. Or several, really. But this post is more of an interesting aside.

You see, in order to advocate well, I've been reading a lot of documents, reports and studies related to educational outcomes for kids with disabilities. Several months ago I was reading something that described a kid very much like the boy who lives in this little green house. The author used the boy like Oliver as a case study for his central thesis. The paper concluded that this other child -- the one so much like my own -- and others with significant disabilities, could benefit from being included with their non-disabled peers in the general education classroom.


Now here's the funny part of the story:  My boy is thirteen years old. And after thirteen years together, after traveling far and wide with him, after riding our bikes for thousands of miles together, after swimming and surfing and camping together, after doing a million small, daily things together, for the very first time ever, upon reading this study, I came to understand that by any commonly accepted measures, he is considered Significantly Disabled.

This kinda blows me away -- almost like somebody told me he had a third eye somewhere that I didn't know about.

It blows me away because I would never, not in a million years, describe him that way because I don't think of him that way. Oliver is just Oliver. And yes, autism is a central part of who he is. But significantly disabled? What does that even mean?

So it got me thinking.

One of the benefits of stepping outside of the system and homeschooling for so many years is that we were free to create opportunities and experiences for our boy. We made sure that we always found ways for him to be competent and successful. We didn't put him in situations where his challenges weren't compensated for by his strengths or supports. So, while of course the challenges of his autism have always been a central consideration, even a significant consideration, they were just part of the balancing act.

But the balance has been precarious this year.

School has not been smooth sailing for my boy -- hence all of my advocacy work. In fact, since the beginning of the new year, I have been spending a tremendous amount of time at school with Oliver. Many, many times we have considered taking him out altogether and retreating to a place where balance is more easily within our grasp.

So when I read those words, Significantly Disabled, it was like that feeling you get when you first try on a pair of glasses with your new prescription and everything shifts slightly into focus. Because over the last few months I have watched my boy flounder and fail in a way I'm not used to seeing. And now I understood: in a classroom where he is consistently asked to overcome his challenges in order to succeed, where they are not also pitching to his strengths. ... well, he is indeed significantly disabled.  In fact, I don't think I've ever seen Oliver as disabled as I've seen him in the classroom this year.


What a revelation.

Now I finally understand some of those awkward silences around the table during school meetings. All along we've been talking about two different kids.

Significantly Disabled.  The difference between an adjective and a verb never felt so personal -- or so powerful -- before.

I will never adopt this lens of disability based on what a person can't do. I won't think of my boy as less able than I know him to be and I won't use those words to describe him to others.  But, wow: What a lesson about words and context! And also about why people -- educators, doctors and therapists -- have the perspective they do and why advocacy is so, so important.

For a very brief moment I saw my boy through their lens -- but I like my vision better. And it's a vision that's worth fighting for. And so is he.

My Boy -- Riding the City Streets of Savannah


  1. Baguette is in the public school system. Her school is excellent, and we are very happy with how hard everyone there works to help her succeed.

    But I'm still always careful to start every IEP meeting with a discussion of her strengths, and how she learns. I want to be sure they hear that from me first, and not as a qualifier later in the discussion.

    1. I'm so glad Baguette has the support she needs at school! This is so important. And yes, yes, to starting the conversation from a place where we talk about strengths and who the child is as a whole person! We include a parent statement with ever IEP so that there is a record of what we want the school to know. I even send his teachers videos of all the amazing things my boy does! Sounds like you have things going well early in the the game. ... Hooray!! Our kids deserve it!