I’m interrupting my “regular schedule”–that is, my lineup of intended blog posts–for a shout-out to someone who I think completely and totally rocks the house, and NOT just because she has a disability.
I’ll be honest with you guys. This blog doesn’t seem to have many readers, at least not ones who write back. Sometimes I wonder if my efforts to advocate for people with disabilities through my words are really going anywhere. And then sometimes, like today, I get a reminder about why I do what I do. Today, that reminder came in the form of fifteen-year-old Carly Fleischman (apologies if I misspelled your last name, Carly), who found her voice despite a bunch of people who swore up and down she didn’t have one.
Some of you may have seen Carly’s story on the news or the Internet. For those of you who haven’t, here’s a basic recap (and you can check out GodVine on Facebook).
Carly was diagnosed with autism at age two. She seemed unable to speak, and due to constant rocking, flapping, screaming, and other “behaviors,” was seen as almost certainly “moderately mentally retarded.” She has been called intellectually deficient, and her parents (who also ROCK), spent thousands of dollars and hours on therapies for her. At various points, Carly would have 4-6 therapists working with her at one time. People suggested to her parents that Carly should be institutionalized–thank God, that didn’t happen. As her dad said, “I couldn’t do it…how can you give up your kid?”
Then one day, at age eleven, Carly ran to her family’s computer and began to type with one finger. The words that came out were HURT and HELP. She then ran behind the couch and vomited.
Over the next several months, Carly at first refused to type, but with motivation from her parents, she began to communicate and realize the “power” she now had. And folks, the Fleischmans couldn’t be more correct. Communication is the most powerful thing, except faith, that you will ever have. As Carly knows from painful experience, if you can’t talk, people ignore you, or they assume you’re dumb.
Well, Carly’s not dumb. Her communication through typing is sharp, smart, sassy, and funny. Her dad said in an interview that when Carly began typing, “I stopped looking at her as a disabled person…I started looking at her as a sassy, funny teenager.” Carly wrote of hopes and dreams, such as the desire to “go to school with normal kids, but not having them getting upset if I bang a table or I scream.” Furthermore, she now uses her own blog, carlysvoice.com, Facebook, and Twitter to express herself and answer questions about autism. What kinds of questions, you ask?
Well, one mom wrote to ask Carly why her daughter screamed for apparently no reason. A teacher wrote to ask about a student who was constantly stimming in class and seemed to miss lectures and instructions. Someone else wrote to ask why some children with autism spit or drool. Others wonder why people with autism often seem, as it is said, “locked in their own worlds.”
The answers will wow you–they sure wowed me. Answers like,
“People with autism seem locked in their own worlds because they’re sensory overloaded. My mind takes a thousand pictures of your face when I see you; that’s why I don’t look at people.”
(About the girl who screamed a lot) “She’s audio filtering…we do it because we understand what was done last minute, last month, last year. She’s fine!”
(About spitting and/or drooling) “I guess I never learned to really swallow. 🙂 When you have saliva in your mouth, there are only a few ways to get it out, and you do what’s comfortable…what gives you the most feedback.”
(About stimming) “Actually, [people with autism] learn better when they stim. And you all stim, too. Think about the drawings you do while on the phone, or twirling your hair…sometimes it’s just got to be more discreet.”
And what about those people who used to say Carly didn’t know right from wrong because she was screaming or throwing things? “I do know right from wrong,” she said. “But it’s like my brain is having a fight with my body to do it…I bang my head because otherwise, it feels like my body will explode.”
WOW. (If I could make that bigger with this program, it would be in like, 100-point font). I’m still blown away reading these quotes. I mean, THINK about it. How many times have you seen or heard the attitude that people with autism just can’t be reached, can’t learn, don’t know right from wrong, will never achieve anything, whatever…all because we don’t understand what they’re trying to say? And how cool is it that people with autism can communicate what they want to, IF given the proper tools, and help us understand? But do any of us listen?
For example, how many people do you know (and if you have been one, that’s okay; I used to be one, too) who believe that autism automatically = intellectual disabilities? (I refuse to say “mental retardation.”) Yet, if what Carly–and others like her–say is true, which I believe it is, people with autism are not suffering from a lack of brain input, or “lights are on, but nobody’s home.” They are OVERLOADED with information! Think of it–a brain crammed–absolutely stuffed–with every word, every picture, every sound, smell, taste, and texture, they’ve ever experienced–which they then have trouble sorting into their proper “compartments,” if you will. Wouldn’t you do anything you could to help with that, even if it meant engaging in what the world saw as a “behavior?” I’m coming to believe that all people with autism, even severe autism, are really, really smart. Their brains have a TON of stuff in them. We just haven’t found all the keys yet to unlocking everybody’s info, and we need to keep working at that.
And here’s another thing. Carly didn’t start typing until age eleven. Some people consider this fact permission to say her story is a hoax, but I don’t believe it is. There are incredible miracles out there, big and small. Frankly, it’s a miracle some of us manage to get out of bed in the morning. 🙂 As Carly said, “I don’t have a hand up my butt like a puppet…I am typing. I am talking.” So, to those who believe she’s a big joke, I feel terrible for you. You’re choosing cynicism, and I can tell you from experience, it feels pretty lousy. But I digress.
The question that truly arises from this fact is, why did it take ten years for Carly to start talking to the world? Was she just waiting for her autism to “let her,” as some people with autism say happens because, for some reason, they can communicate with some people, but their bodies and brains won’t let them communicate with others? Or, was it because nobody gave her a chance, and the proper tools, to start talking, like a computer, or assistive technology, or even a letterboard? Was that considered? Or did all the doctors, all the therapists, never think of that (and thus, did her parents never think of it), because she seemed “too far gone” into autism? And if they had thought of it, who knows what would’ve happened?
Carly’s parents now say they want her to be happy, to have dreams and goals. Now, I don’t doubt they wanted those things before the typing began. But did they believe those things were possible, or were they told “impossible?” Did they absorb that message? And if so, what could they have been listening to instead?
So many people in the world today still believe people with disabilities, even those of us who talk with our mouths, have no voices. It makes me angry, and it breaks my heart. Please, readers: listen. Because you might hear somebody whose voice you never would’ve recognized saying,
“HEY! I’M TALKING HERE!”
Thanks so much, Carly, for sharing your story and for being a great person. Keep talking–love you!
P.S.: Carly can also be found on the website of The Golden Hat Foundation (check “Links.”)