(Image courtesy of Brooke Pauley)


The little things: rethinking disability

“Does your sister have autism?” My sister could not believe what she heard. Apparently, this “friend” had seen me running on the track. To be fair, to see me running on the track is a strange sight. My torso swings in and out, as I inhale, exhale. I clutch my side, hoping the pressure will…
<a href="https://highschool.latimes.com/author/lhotp1/" target="_self">Brooke Pauley</a>

Brooke Pauley

February 26, 2016

“Does your sister have autism?”

My sister could not believe what she heard. Apparently, this “friend” had seen me running on the track.

To be fair, to see me running on the track is a strange sight. My torso swings in and out, as I inhale, exhale. I clutch my side, hoping the pressure will ease the pain.  I jog in 30-second spurts, then slow up to rest. My legs move slowly, so slowly that as I finish my first lap, the runners next to me breeze through their second. Very soon, they will be spectators from the sidelines. I will cross the finish line alone. But I keep pushing. I have been pushing, every minute, every day, since the day I was born.

For my mom, that day came too soon. Her November baby showed up at the end of August. It took an emergency C-section to bring her little bundle of joy into the world.

Little is the operative word. I weighed two pounds, 11 ounces.

The next two months were a series of late nights, frequent blood tests, and daily weigh-ins. I was attached to a respirator and lived in a germ-proof incubator. I was an undercooked organism, not ready to face the world.

At last in October, I weighed a whopping five pounds—enough to go home. Mommy, daddy and baby could finally make three, and it seemed the worst was behind us.

Even though I soon grew to be the same size as—and, indeed, often bigger than—my playgroup buddies, I slowly began missing milestones. I took twice as long to learn to roll over, crawl, and finally—at two-and-a-half—walk. After a series of tests, we discovered I was more than “a late bloomer.”

I had cerebral palsy.

In freshman biology, we learn that the brain is our body’s supercomputer. It seems that when I came out early, my brain lost some oxygen.

So it is technically brain damage—that’s what any disability (including autism) is.  The type of disability you have depends on where the brain damage is, and how badly it has been damaged.

At the time, these were just two more of the unanswered questions my parents had. What they did know was that they were going to love me—no matter what.

We had our work cut out for us.

Through therapy, we were better able to grapple with my capabilities. I like to categorize them three ways: mobile (walking, skiing, and the dreaded mile run), fine motor (smaller things like brushing my hair, buttoning my jacket, or cutting with a pair of scissors) and visual-perceptual (seeing stairs, interpreting graphs, and recognizing specific faces.)

Though that seems like a big burden (and, with the minutiae of daily life, sometimes it can be) I soon realized I was very lucky. Once I learned to walk, I could do it without a wheelchair, walker or cane. I had no problems speaking (except for the fact that sometimes it would behoove me to shut up). Most importantly, there was nothing wrong with my mind or my behavior. I was cognizant. I was capable.

I was going to be fine.

Cerebral palsy (CP) is a spectrum disorder; you can have it very mildly (like I do), or be nonverbal, wheelchair-bound, and dependent on others for your whole life.

And as it happens, autism works exactly the same way. Severely autistic people may be unable to communicate with those around them, but others (like Temple Grandin, the industrial designer portrayed by Claire Danes in a 2010 HBO movie) are high-functioning. The difference is that my disability is physical. Autism is behavioral.

I never lose sight of how lucky I am to have been born in 1998. 100, or even 50 years before, my parents would not have had many options for me besides confinement in an institution. Thanks to the Individuals with Disabilities Education Act (IDEA) and similar legislation, millions of disabled Americans can transcend their limitations in public school and beyond.

But school was (correction: is) still hard. I do algebra on customized graph paper, type notes on a computer, and take standardized tests on paper so big I have to put two desks together to make it (kind of) fit. When I was younger, I was pulled out of class regularly for extra practice with letters and numbers, and I worked with a fantastic P.E. coach to learn to throw a ball.

School can also be frustrating. Sometimes, no matter how hard I try, my brain can’t process what’s on the page. If I try really, really hard, I can make my handwriting look like what other people would do “in a rush,” but my hands get tired.

And as much as this very article would act to the contrary, I don’t want any special treatment. It’s embarrassing to not be able to construct a 3D model like other chemistry kids, and no matter how often I do it, raising my hand and in effect saying, “I can’t do this,” always seems like a cop-out. I don’t want anyone’s pity. I’m not even totally comfortable writing these words. I don’t want to fly the flag for those with CP or disabilities in general.  I hate that in many ways, my sister, who is two years my junior, has had to become the big sister.

And most of all, I hate that she was subject to someone’s ignorance that day on the track.

I don’t blame that girl—or anyone, for that matter—for such ignorance. I know that they don’t realize that calling someone retarded has deeper implications than they can even imagine. I know that if they knew me, my disability would be the farthest thing from their minds.

I also know that my life—our lives—are about the small things. My parents and I will rejoice over a successfully-tied shoe, neatly cut piece of fruit, or an especially pretty signature. My doctors, therapists, and teachers are quick to notice these little victories too.

Calling someone retarded or “special ed” is no small thing.

And though it may seem small, getting to know someone who is different from you is a big deal. You may learn that the two of you are not so different after all.

And you will make them feel like they just crossed the finish line.

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