Ok, I just HAD to vent share. Tuesday afternoon Lucy’s bus arrived. Her bus driver is an older man and his assistant is his wife. I have to guess they are in their late 60’s maybe early 70’s. Their job (every day) is driving the bus that carries kids with special needs. They have been doing this for years.. I don’t know how many years. So, the bus pulls up, they unfasten the straps that hold down Lucy’s chair and Lucy drives her powerwheels to the door and is waiting for the ramp to come down. The bus driver, let’s call him “Mr. B” is standing outside of the bus and is ready to drop the ramp so Lucy can pull up… the point is Lucy, Mr. B and I are all within 3-4 feet of each other and Mr. B says loudly, “So, what’s Lucy’s problem?”
My first thought, was “Oh crap, what kind of problem did she have on the bus today?” I looked at him searching for more info and realized he was actually asking something else. I think I blinked a couple of times and my head shook – yep, I did a double take and said slowly, “Oh!! Do you mean, ‘Why is Lucy in a wheelchair?’ and ‘What are the physical issues she lives with? and “Would I mind sharing about Lucy’s disabilities?'” I looked at Lucy and smiled and winked.
“Yes!” Mr B. answers.
“Well,” I said, “Lucy has spina bifida and cerebral palsy.”
And in response to that, Mr. B throws his fists down and hollers, “That is TERRIBLE!!!!”
I am pretty sure my eyes widened with horror, because that’s what happened right now as I typed it. I looked back at Lucy who seemed a little confused. She may have been asking herself, “IS this THIS terrible? I had no idea it was terrible! Am I terrible?”
I smiled again at Lucy with another, “Let me handle this” wink and I said to Mr. B, “Actually it’s really not terrible, it’s not bad at all. Lucy is a brilliant little girl and she has a pretty incredible life and her wheelchair is just how she gets around.”
Mr. B’s wife was standing at the door and it was clear she agreed with Mr. B, with antics like throwing her hands over her face when I said, “spina bifida and cerebral palsy” and letting out big breaths of air like she could hardly believe what she was hearing.
Lucy was being lowered on the ramp, almost touching down to our driveway and Mr. B says, “Well, seems like all that doesn’t really affect her brain. Her brain works fine doesn’t it?”
“Yes, Lucy has a great brain, she is very smart and understands everything.” I think he missed my emphasis there. I think he missed a lot of my re-wording as well. When Lucy cleared the ramp, I hugged her close and whispered, “Maybe we should get you a t-shirt that says, ‘What’s YOUR problem?'” Lucy giggled.
As the bus drove away Lucy and I were able to share a moment and have another conversation about how many people just don’t know how to ask what they want to know, without sounding like a knucklehead.
And this is our life, re-wording things that others say in hopes of modeling less-insulting, non-labeling conversations in hopes of maintaining, if not building my little girl’s self-esteem.
I would love to hear your best and worst stories. Did someone say something unbelievably sweet, rude, insensitive or adorable? What do you think is the best way to ask these questions? Even I get all weird and nervous when I want to ask someone why they are in a wheelchair. Will they be offended and say, “I’m in a wheelchair because I can’t walk!”
And I hate it when people stare and don’t ask anything. Lucy is the stare magnet right now, everywhere we go people stare at her. So, we figured the best way of dealing with it is this- Lucy looks right at them smiles and says, “Hi there!”