I really struggled with writing the title of this blog. I changed it 5 times. What an awful title for a blog but we need to have a conversation about words. Recently, I was delayed traveling home in Denver International Airport. My cell phone battery started to die. In the Denver airport, the charging stations are positioned right near good old fashion pay phones, and they're clustered uncomfortably together, close together. Little human communities are built as everyone is now using their laptops, phones, reading devices, and everything that feeds off of a battery charge. I roamed around trying to find an area that was empty so that I could sit alone with my own thoughts, a rare, lovely pleasure for a parent of 3 boys. I sat among girls who went to college together, and felt very uncomfortable sitting on top of their reunion. As my empty area started to fill up around me, I would get all sorts of different people clustering around the free electricity. Sometimes I would move to another area if it got too crowded. My phone seemed to be charging really slowly, and I wished for it to charge faster. A girl walked over and sat about a row away from me. She might have been in high school or early college. I'm realizing as I get older that I can no longer tell how old anyone is anymore. If I think the person is in high school, he or she is likely in college. Nevertheless, a college-high school girl sat about a row away talking loudly on her cell phone, which isn't anything uncommon or special these days but there was no filter on what she was about to say.
Let's pause here. To give you some context, I grew up in the 80s. The 80s were fraught with bad hair and really bad catch phrases and buzz words like, "gag me with a spoon" or " that's so gay" or "retard" or "retarded". Terrible, awful, stupid words. In my house, my Dad has committed most of his life to working with adults with developmental disabilities or handicaps. I met many Autistic adults back when diagnosis was kind of rare, or at least awareness was a little more rare than today. We were never permitted to say the "r" word, "retard". Never. If we said that, we'd be grounded until at least 40, and we'd have no phone privileges. Frankly, we didn't need those threats. We went to holiday parties at disability centers and had respect for the folks we met. We never, ever said these words. They hurt. I had just recently made peace with the "r" word because it's pretty much everywhere when you're reading anything about Hunter Syndrome, or so I had thought.
Here are the words you read when reading about Hunter Syndrome, and some say you should get used to hearing them and not be offended by them, at all because they are medical terms and symptoms:
Coarse Facial Features
Mental Retardation, X-Linked (in other words to the mother)
Mental Retardation (no reference to X-Linked)
Claw-like hands
Broad nose and flared nostrils
Protruding tongue
some Hunter Syndrome patients also get a spot on the Autism Spectrum due to some symptoms that present with their disease, some anti-social behavior, aggression, developmental delays, and other symptoms consistent with the Autism Spectrum.
Autism Spectrum Disorder
The way I had made peace with these words, and the people who say them was that I realized they don't even begin to define my children and other children who these words are applied to by the medical community and others. I had decided they, these words don't apply, period. My children and others have so many gifts, they're people. They're special. What have we recently learned in the news about the man who was in a vegetative state for years? He could hear and understand everything around him! I think you need to work with, or live with a special needs child to really understand that they are in there, they are in that body. They communicate with their eyes, their facial expressions, their emotions, and many other ways. If you understood that they are just as human as you and me, you'd probably not use those words to hurt them but instead we're intimidated and we label what we don't understand or think we understand. My children hear the words you say about them, and trust me sometimes I hear things kids say about my children from other children. I see Alex on a daily basis hear what we are saying but he can't participate easily in the conversation, but he hears, and many times understands what we are saying. We need to realize that no matter what anyone looks like on the outside they may be understanding you, or hurt by your words. These are people inside of these bodies with thoughts, interests, talents, loving hearts, etc. To date I haven't been bothered by these words so when someone says them, I try to say "that isn't who Alex is, and you need to protect special needs kids, they need your help because you can help them." I recently asked Jack if he was embarrassed by Alex when we were picking him up from school, and Alex was running around and being loud in the school rotunda, he said "no, I am not. I wish we could see him without special needs though".
Until the Denver Airport, I was never, ever bothered by these words. The girl near my little electric community proceeded to talk very loudly about a person she knew who was having trouble speaking, and he was so weird when he talked that she thought he was "like autistic or something". What? It didn't stop there either, when talking about someone else she knew, she said, "it's like he is gay or something." What again? Cut. It. Out. As many dirty looks as I sent her way, she didn't even notice. Even my loud huffing sounds drew nothing, no attention. I thought about throwing myself on the ground in front of her but she might have just stepped on me. I was completely unprepared to deal with the word, "autism" being used in that way. Is this the new "r" word? Awareness is wonderful but sometimes this is what happens as a result, society grabs on to a word and twists it not only into a buzz word, but a description or a bucket that someone fits into, and that bucket is a bad bucket to be in. Sometimes I secretly wish everything was published in Latin so it makes it really hard for people like this to grab on to a word, and use it for bad treatment of others because they can't say it! Hunter Syndrome is really Mucopolysaccharidosis II, spell check doesn't even know what that is...and you can't really make anything too exciting from it to make fun of it, and it makes you sound intelligent saying a word no one can pronounce.
Now clearly this girl was making an error, and what double stinks is that we didn't get to have any dialogue about it. We can learn from this, we can. Be the one who says something, wait for her to get off the phone and say something! I also met a rocket scientist with 55 patents, and a man who worked out a lot and confessed his insecurities to me. He indicated that he wasn't getting big enough at the gym, and was considering taking steroids. This is what happens when you have a kind face in the airport! At least that man was potentially saved by some dialogue! I told him he might get bigger, it might attract the ladies he was after, some wouldn't like it, he may rage, and get angry a lot, and I heard his wiener may shrink...and that wouldn't bode well for keeping the ladies around. Just stating the possibilities and facts.
So what's the message here? Please just take the time to talk to one another about how we talk about each other. Ask your kids if they know any special needs kids. Ask them what they think about those kids? Do they help them during the school day? Or do they make them nervous, and they think they're different? Have a dialogue about how people should be treated, how everyone should be treated with special needs or without. It's OK for other kids to experience trial and error here but we really need to start talking about why we use these words about people who are just as human as we are. We can use you and your kids on our team! There are already many, many children and parents on our team, and we need you too!
Thanks for reading!
Amy
No comments:
Post a Comment