Theresa is a sparky, quirky, witty and intelligent 14-year-old. She’s also a loving and compassionate friend, fierce defender and advocate, not only for Hannah but all people with disabilities. She is on the junior roller derby team and skates 3 or 4 times a week. She has, more than once, squarely sounded off to someone at the rink for use of the “R-Word” or pointed out, with confidence and no remorse, when someone is being needlessly insensitive. Her sense of justice is well defined and she makes no excuses for it. The flip side of that is sometimes a broken heart, but she willingly accepts this. So last night, when the topic of disability self-awareness came up, in regards to one of her friends on Hannah’s special needs bowling league, it was a glimpse into a pure heart seeking understanding of the world around her.
Apparently one of her best friends, who happens to have special needs, mentioned to her, at bowling, that she was never told by her parents that she has special needs. She just figured it out because every activity she does is with the special needs community. The needs of this child aren’t typical, as if you could say any child’s needs are typical, but what I’m trying to say is that her intellectual delays are more subtle than most while her physical limitations land her in medical peril frequently. What is striking about this conversation is that her parents never told her that she had a disability and she, being self-aware, naturally deduced this and discussed it honestly with her friend just as one would with any revelation.
Hannah, in the front seat, listening, meekly piped up. “What is disability, I mean, what does it mean?” I have, very matter of factly stated that Hannah has Down Syndrome. We created a doll with Down Syndrome because she said that there wasn’t a dolled that looked like her. She knows that she has a diagnosis. I have known for a long time that she knew she was not the same as her peers. We have encountered our fair share of rude stares and hurtful words. But until that moment in the car last night, I didn’t realize that she had questions. Fair questions. She has a right to answers.
I started by telling her about her chromosomes. They have talked about this in school so her understanding is more complete. I told her that a syndrome is a collection of traits that a lot of people have that are similar. Her hands, for example- her sweet little pinky finger, still one of my favorite attributes, softly curving inward. We spoke of her “giant monkey toes” that can grip and carry and that sandal gap that is wasted on her because she doesn’t like sandals. We talked of her almond eyes and her “shark teeth,” as she calls them. And then it got hard.
I asked her if she ever noticed that sometimes it takes her longer to learn certain things? It took her until the 9th grade to be able to read, for example, but now she reads. I asked her what she thought of the various therapies that she does or that sometimes people can’t understand what she says the first time around. I told her that people call these things “disability” because they don’t happen on the same schedule as most people. I told her that there is a big distinction between “bad” and “different.”
She turned the light on in the car and began turning her hand over and really looking at it- examining that palmar crease and trying to see what was so peculiar that it would have a big name like syndrome. She gave a shrug of sorts and said, “but, it’s just ME.” Theresa chimes in from the back seat, “Yep, Hannah, it’s just you. You aren’t a disability, you are just… you.”
It occurred to me that I never sat down and discussed this with her because it would be like sitting down with her and saying, “and you have brown hair.” It’s something that we live with every day and we view as our reality, more often than not, our gift. It’s important for me to remain mindful that Hannah is an intelligent young woman just trying to make sense of herself and her place in the universe. I’m sure this is the beginning of the discussion and I’m okay with that. Being comfortable in one’s own skin is vital to self-fulfillment.
Have you had this discussion? Would you be comfortable sharing your thoughts?