I had an aunt with a disability. She had a big head, a small body, she used a wheelchair, and the hair on her chin tickled my face when I had to kiss her. I was scared of her.
“Don’t stare at her, it’s rude! Look away!”
I wanted to stare. I was just a little kid, and I did not understand how someone could have a body like hers. Sometimes, I would hide behind furniture and stare at her.
The don’t stare, it’s rude, look away message was – and perhaps still is -everywhere.
No wonder I was so afraid of disability. To me, disability was something you don’t acknowledge, something you stay away from, something you don’t talk about because it’s bad.
So when my daughter was born with Down syndrome, I thought it was really bad. Not only that, but based on how others responded to her diagnosis I soon recognizedpeople thought it was bad too.
Why are we so afraid of disability?
Amazing how parenting a child with special needs can open your eyes to what life with disability is really like. It turned out, Down syndrome was not so bad, as a matter of fact, I came to love that specific aspect about my own daughter! Truly, Down syndrome is a part of her that I cherish. My view on disability was affected and that is why when she was two years old, my husband and I chose to adopt another little girl with a disability, a child with cerebral palsy.
At first, I was scared of how cerebral palsy would affect our family, but then I realized I was scared because I really didn’t know much about her particular condition. I was afraid because I was uneducated and ignorant about what cerebral palsy was.
Is that why we are so afraid of disability? Because we don’t really know what disability is like unless it is part of our lives?
I think back to being a child, staring at my aunt. What if someone asked me, “Do you know why she is different?” They could have explained to me that she had hydrocephaly, and that was why her head looked big; when she was a little girl she had Polio, which was the reason she was in a wheelchair; the hair on her chin, well…she needed to pluck those hairs.
What if she had asked me? “Ellen, do you notice I am different?” And then she could have told me about her disability. Maybe I could have asked her questions, like how she got shirts over her head, or how she brushed her hair, or how she put her shoes on, or why she had hairs on her chin and did she want a pair of tweezers. But I suspect all of us in our family – perhaps including her – had been asked not to stare and to look away at some point. Nobody wanted her to be offended.
Is that why we are so afraid of disability? Because we don’t want to ask questions that could offend people? Is that why it is easier to stay away? To look away? To ignore?
Disability is a part of life. I parent three little girls, and two of them have special needs. And you know what? There is nothing to be scared about!
Every morning, as I wake up, my youngest daughter with Down syndrome greets me with a “Hi mom!” that makes me feel like the guest of honor in a breakfast feast. She has a way of making me feel special, even when I do for her the smallest of things. She fills my love tank to overflowing, because she radiates love with her smile, her touch. She celebrates life with exuberance. It is contagious.
Is that why I was so afraid of disability?
My daughter with cerebral palsy challenges a world that too often has said no to her. From her beginnings as a premature baby born in Ukraine, she’s had to fight for her life. And she fights with courage and grace. I see it as doctors suspected she would never walk independently, but she had other plans, and although her gait is labored, she walks independently, her head held high, proud of what she has accomplished. She never gives up, never. She has more determination than anyone else I know.
Is that why I was so afraid of disability?
Now that I am not so ignorant about disability, I sometimes think about my aunt. She was getting out there, in a culture not as accepting of disability (she lived in Mexico, where I grew up), making sure she was part of life’s celebrations. She was well aware that some kids and adults might stare. But she was participating in life, not simply watching it go by.
I think about my own family, the celebration, the laughter, grilling burgers in the backyard, trips to the grocery store. We are a family, perhaps a special needs family, but we are a family first of all. A family with joys and challenges, and so much love. So much, so deep, so strong. I feel like the luckiest mom as I parent my children. The luckiest of them all.
My children have changed me too. They have helped me realize what really matters in life. They have gently forced me into rearranging my priorities. To recognize that the value of life is not found in who we are not, it is found in who we already are.
There is full acceptance. There is unending joy. There is unconditional love, no strings attached, no expectations, just love.
Is that why I was so afraid of disability?
So now, when I am out in public with my girls and I notice the stares, I don’t want people to look away. When someone stares at my daughter with Down syndrome I smile, and I say, “Isn’t she beautiful?” And I watch a confused look turn into a smile, as a simple question gives permission to look, to really look at my daughter and not her diagnosis, “Yes she is!” they say. When people stare at my daughter with cerebral palsy I say, “Can you believe doctors told us she would never walk?” The question that gives people permission to engage in conversation, to ask questions, to learn, to know that disability is okay.
When little kids ask questions and parents run and apologize for their child, I tell them not to worry. I assure them I am glad they are asking questions, because it is natural for children to notice differences and ask why. It is part of their development. I don’t want another generation to be scared of disability.
Let’s put away the fear that surrounds disability. Fear makes us turn away, rather than allowing us to embrace. Let’s embrace the person. Because really, why are we so afraid of disability?
This post first appeared at ellenstumbo.com
