I’ll never forget the first time I felt it. It was one of Owen’s first outings. We were at the neighborhood grocery store. He was in his car seat, clipped into the stroller and facing me. An employee was walking towards us and her face broke into a grin. She was excited to see a baby was in the store. “Oh” she exclaimed with joy… and as she got to where she could see him with his nasal cannulas and head shaping helmet, her excited “oh!” turned to “ooh” with a frown.
My heart sank.
She clearly didn’t see the beautiful fighter that overcame so much to be there that day. Instead, she saw what Owen wasn’t and she felt bad for what he wasn’t.
I don’t know, if on that day, I was able to articulate that it was pity that she was expressing, but I know I didn’t like the way it felt to see my son be the recipient of it. I was relieved that he was too young to see her looks of concern and feel her focus on what he wasn’t.
It’s important to acknowledge, I’m confident that this woman didn’t intend to hurt my feelings or belittle Owen. I have a feeling if I had politely let her know, she would have been honestly and profusely sorry. Instead of saying something to her, I walked away and chalked it up as our first lesson in what many special needs families have learned ahead of us; all too often the attitude in our society is to focus on what people can’t do, rather than what they can do. And the overwhelming response to what someone can’t do is, “it’s such a pity.”
Pity is exactly what Owen does not need – it will not help him. Instead, pity will enable Owen to feel bad about his circumstances. Pity will give Owen an excuse to give up when life gets hard. Pity will be a constant reminder to Owen that he is different – that, to some, he’s not “good enough”. Pity will prevent Owen from being all that he is.
Instead of pity, what Owen needs is empowerment. He needs to be empowered with the attitude that his being born a mircro preemie who has chronic lung diseases and brain injuries is not an excuse for him to not fulfill his dreams. Empowerment is given through a combination of hope, expert care and a world that gives him a chance.
We are very fortunate to live in a metropolitan that makes it relatively easy to get expert care. Minneapolis / St Paul has three nationally ranked children’s hospital systems; University of Minnesota Amplatz, Gillette Children’s Specialty Healthcare and Children’s Hospital and Clinics of Minnesota. Each of these systems works collaboratively and provides care for Owen. Gillette, the nation’s first hospital for children who have disabilities, has an office less than five miles from our house where Owen has therapy that empowers him.
Hope is another component to Owen’s empowerment that comes easily to him. He doesn’t know what he doesn’t have, but he has an innate drive to get what he wants. Owen’s is an attitude that fills many of us with hope.
If there is one thing that worries me most about Owen’s future it’s if he’s going to grow up in a world that gives him a chance – a world without pity. When Owen’s been able to go out, the looks of pity have been prolific. I know for Owen, and all of his preemie and special needs friends, to have their best chances, we need to help people understand that their pity hurts. We need to provide ways to let the world know that solutions, not pity, are needed.
It’s the moment in the grocery store, and the many similar experiences we’ve had since, that made the CurePity movement resonate so strongly with me. Championed by Gillette Children’s Specialty Healthcare, CurePity is a campaign that asks the world to sign a pledge promising to reject pity and to take action to improve the lives and health of children with disabilities.
I signed the pledge because what Owen can do is greater than what he can’t do. I am choosing to empower, not pity, my son and all children with disabilities.
You probably already know Owen’s story.
There is also Logan’s story.
And Lexi’s Story.
I bet you have some stories of your own too.
Won’t you please, take one minute to sign the CurePity Pledge? It doesn’t matter where you live, CurePity isn’t about one hospital system in Minnesota. CurePity is about an attitude of rejecting pity in our society and fighting to establish and protect the rights of people with disabilities. It’s about giving our children a world that sees what they are, not what they are not.