Advocacy is part of every parent’s job description. As parents of children with special needs, we find ourselves on the job at unexpected times and in unexpected places as this post by guest blogger Ellen Stumbo shows.
On Being an Advocate: Speak Up!
I first heard his scream among the crowd. That garbled yell that came either too soon or too late. He kicked his stiff leg awkwardly and painfully slow, his hands in fists and arms curled up close to his body. The rest of the tae-kwon-do team moved in perfect unison. But not him. His father–or a helper–pushed his wheelchair while the team made its way through the small town 4th of July parade. And while his movements were imperfect, he beamed with pride because it took every ounce of energy to do what he was able to do.
That’s when I saw them.
As I walked back to join my family by the curb of the street, a man and woman kicked their legs mockingly, making rude noises with contorted faces making fun of the young man with cerebral palsy. They laughed, they pointed, and I felt the rush of blood pumping through my veins.
A crowd stood between me and them. To speak up meant I had to go out of my way and around people to get to them. I could have simply walked away. But I couldn’t. What if that was my child? What if that was someone making fun of my daughter with cerebral palsy? What if they were mocking my little girl with Down syndrome? What would the mother of that young man do?
I had to speak up, so I made my way through the crowd. “Excuse me,” I said with far more confidence than I really felt, “Why are you making fun of that young man? Do you really think it is funny?”
Startled, the man fumbled with his words, “Ummm…no, we are not making fun of him.”
“Really? Because if you are not, then how do you know who I am talking about?
“We are making fun of our friend,” the woman quickly added, “we have this joke with him and we always make fun of him. We were not making fun of the guy in the wheelchair.”
“Listen, I don’t know who you were making fun of, all I know is that for anyone watching, you are making fun of the man with cerebral palsy.”
“We would never do that.” The man tried to sound serious, like he really meant what he was saying.
I raised my hand in a gesture for him to stop talking. “Do you have any idea what it took for him to be out there? Do you realize that even right now, as different and awkward as he is, he is giving his all? Do you realize that he has given more than a hundred percent? You should be challenged. We should all be challenged by him. We go around our lives giving the least we can just to get things done. But there he is, giving his all. Knowing that some people will still ridicule him and make fun of him. But it doesn’t matter. It doesn’t matter because he is determined, because he won’t let anyone’s perceptions get in the way of a dream. We should all look at him and be moved, be inspired.”
There was an awkward silence, the adrenaline rushing through me had my hands and legs shaking.
“Yeah” the man broke the silence, “These people can do lots of normal things now, it’s pretty incredible”
I smiled at him. “These people? They are not these people, they are people, just people. And yes, they are incredible, showing the rest of us normal people about what really matters. You see, I have two little girls with special needs. One of them in fact has cerebral palsy, just like that man. I hope someday she chases hard after her dreams. So I look at that man and I am inspired, and I am full of hope. Hope that someday my kids will be included, accepted, and not be considered one of these people, but part of the team.”
After a pause, I added, “Have a nice day” I turned around and walked back to find my family, blinking the tears that threatened to run freely.
I had to speak up. Not only for that man, but for my girls too.
When Do You Speak Up?
When do you advocate for your child? Leave a comment about what compels you to speak up. And read more about Ellen’s life as an advocate at her blog, These Broken Vases.
photo credit: www.freedigitalphotos.net
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