My daughter was zooming through the toy aisles at Wal-Mart with her walker, I was chasing her and asking her to stop or else there would be no Lala Loopsie. Actually, she had more of a run-run-glide thing going on. One of the workers was standing on a ladder arranging shelves and noticed, I was sure he was going to ask her to stop running, but instead, he looked down at me and said, “I am so so sorry she’s like that.” And his face was contorted with great pity and sadness. He thought my daughter’s disability was a great tragedy.
His comment stopped me right there in front of his ladder. Thankfully, my daughter was already zooming by a different aisle and did not hear the man or watch his pitiful face.
“What are you sorry about?” I asked.
“Her being like that.” He said shaking his face, his forehead lined.
Let me pause to say that I really believe that angry advocacy doesn’t do anyone any good. I try to take any opportunity I can to educate and to help people see and understand what life with disability is like. But make no mistake, deep down, I wanted to shake his ladder!
“Don’t be sorry.” I said, “I feel very proud of her.”
“Well of course, but the poor child is unable to walk, it’s just so sad.” He said.
“It isn’t.” I said.
He just stared at me, as if I was the one that did not understand.
“We didn’t even know if she would be able to use a walker independently.” I said, “And look at her, I mean, Look at her! She IS walking.”
At this point Nina was running by us again.
“It’s amazing!” I said, “She’s just a little girl having fun, being naughty, ‘Nina stop running!’ and she loves life. There is nothing sorry about that. She should make you smile.”
That was all, I walked away and caught up with my daughter.
A tragedy, some people think my child’s disability is a tragedy.
Well my child’s disability is not a tragedy. But I know, I know that as we do life some people look at us, look at two of my girls and think it is a tragedy they have a disability. They think we are that poor family with TWO kids with special needs!
But you know what would be a tragedy? If I lost any of them.
And it happens, I know of pregnant women who have a prenatal diagnosis of Down syndrome, and then unfortunately have a miscarriage, and people comfort the once-expecting-parents and say, “It was for the best.”
For the best? Losing their child was for the best? A family with empty arms was for the best? The tragedy in the disability is so great it would be better for them to die? What?
I know, I know, some think that people with disabilities suffer. But let me tell you, my daughter with Down syndrome does not suffer. She actually loves life! She is one spirited little girl full of joy and unconditional love. Hang out with us, no suffering here!
And while my daughter with cerebral palsy deals with pain every day, she loves to be alive. She loves to run-run-glide down the aisles and oh how she giggles! That is certainly not the tragic type of suffering that would render one of those, “It was for the best” if she were to die. Because God knows losing her indeed would be tragic.
My child’s disability is not a tragedy. The tragedy is found in how people perceive disability, and on some pretty inaccurate stereotypes and old ways of thinking. I wish people could see what I see, what I live!
My children are children first of all.
They love to play and swing and swim.
They love Christmas and birthdays and parties.
They love dancing and singing and spinning.
They love chocolate and ice-cream and cookies.
They love making silly faces when the camera comes out.
They love making sand castles.
They love to laugh, to love, to scream with glee.
They make me so proud!
They are children, full of life. So full of life!
Life is to be celebrated and that’s what they do.
My child’s disability is not a tragedy. Life might be different than if we were a typical family, but our lives are rich and full.