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 recognized people 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?”
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People are usually afraid of the unknown and disability is a rather large unknown for most people – with popular culture feeding into the fear with gusto.
But, as I’ve said in many, many of my own posts: WE CREATE CULTURE> it’s not some other person over there, its you and me and the neighbour and sister, brother, cousin; it’s ALL OF US. So if we work to change a popular cultural misconception that disability is something to be feared – and we *can* work to change this – we WILL change it.
I don’t think agree that those of us with a disability should be providing the teachable moments for those without a disability. Rather, I think parents who want to change cultural perceptions of disability will seize teachable moments within everyday life to work with their children. Here is a post in which I talk about that:
Talking About Having No Arms or Legs with a 4 Year Old: http://www.withalittlemoxie.com/blog/talking-about-having-no-arms-and-legs-with-a-4-year-old/
I think it’s important to approach disability from an angle of oneness, of commonality.All people are from one family, all people have strength, all people have power, all people have frailty and vulnerability; all people have hearts that love and all people need to love. I think it’s important – in changing culture – to NOT make it a teachable moment of pity or broken-ness or inspiration or that we are here to teach you, as you have once said yourself, Ellen, “what it means to be whole”; we are simply here to live our lives as every human is.
Meriah,
First of all, I really respect and value your perspective. You have challenged me often, and I thank you for making me aware of things that I don’t see. I personally don’t know many other people that can speak into the issues of disability not only as the parent of a child with Down syndrome, but also as an adult with a disability. I agree with most of what you have to say, however, I do not think that we are all here just to live our lives. I believe that God created all of us for a purpose, and much of that purpose is found in relationships. All of us, at some point, become teachers of life to those around us. All of us, at some point, become the students of life. So yes, my kids have taught me about what it means to be whole, and no, I don’t say that only from a disability perspective, nor do I think that is their only purpose in being. Actually, I do believe that we were created by God and for God. That’s it, all of us bearing the image of Christ, exactly the way we are, flaws and all. And looking at life from a God centered perspective, yes, I will be the first one to raise my hand and say that I am broken, which is the heart behind my blog. I am a broken person, in much need of grace and mercy, loved by an amazing God that gently mends the pieces back together. This is where I come from.
I have overcome a lot obstacles caused by cerebral palsy. Your blog is very encouraging. I think people often respond rudely to people who are handicapped because of fear. Thank you for sharing your reflections about your aunt and as a mother of children with special gift.
First of all I work for a home health company and take care of young adults and older adults with disabilities. They are unique in their own way. They are not only people I care for we also became real close friends. I also am the hands and feet of Jesus to them. I have told them about Jesus and they accept Jesus as there JESUS of there life. I am a mother of a child with disabilities. I believe that God created me for a purpose and a relationship. All of us have sometime become teachers of life,but sometimes students of life. I do believe each of us was created by God for God. In Christ we are all his children and he loves each one of us and we each have a purpose in life.
I enjoy when people ask about our daughter. Few have heard of mitochondrial disease and the intricate, sophisticated way that God created us. Each question is an opportunity to share about the hope He has shown us through our daughter.
Yes Sean, our stories matter, and sharing them is so important!
As the parent if a child with Cerebral Palsy I find it somewhat offensive how you state that Doctors said your daughter would never walk but she had other plans, and you also say “can you believe that Doctors said she would never walk”. It’s great that your Daughter walks but there are many children with Cerebral Palsy who despite their strength & determination and “plans” will never walk. This doesn’t make them weaker or less determined. Makes me wonder if you would be as accepting if your daughter did not walk.
Carrie, I am sorry you find the description of my daughter offensive. Already, in first grade, she has been made fun off because of the ways she walks, kids have called her names, or imitated her gait. You can imagine how hard that is, so when people notice her, it is because of the way she walks and the braces on her legs. I think you will agree that cerebral palsy has different levels of involvement. I have met several kids with cp that are “doing better” than my daughter, and comparing her to them usually leaves me discouraged. I’ve learned that I can only look at her, and how hard she works, and celebrate all of her accomplishments, no matter how big or how small. Would I be as accepting if she did not walk? Acceptance is not based on ability, but simply in the fact that she is my daughter, and I love her, and her life has great meaning and great value.
Ellen, I admire & agree with your response. I completely understand that when our children beat the odds or not only survive yet thrive, its nothing short of a miracle! I am not comparing my son to those that aren’t doing as well nor to those that are way ahead of him. Its just amazing to sit back & think, “and they said you’d never do this”
Thank you!
God’s blessings to you & your family 🙂
Heck yes! I think fear has a ton to do with it. I have CP but when my friend had a stroke I was really,really scared because I was afraid I would hurt him somehow so there were moments where I was afraid to even go near him again. Then he told me what a stroke actually was and I wasn’t scared anymore. When a kid stares at me I say “I have CP. My brain doesn’t tell my muscles the right messages” etc. That usually clears everything up and I have made friends by doing this. Explain and communicate disability and these fears go away.
M yes! And I hope my daughter eventually is the one engaging people and sharing the way you do.
Thanks so much Ellen! I saw this fear again when my entire class literally tried to hide by slumping down in their desks to avoid asking a disabled teacher what his disability was. When I finally had the guts to ask the teacher was utterly relieved somebody said SOMETHING. Just teach your daughter to communicate, and that people are usually either curious or afraid and are just to shy to bring it up themselves. P.S it’s NOT offensive to celebrate your daughter’s walking. I work my butt off to walk like your daughter and am grateful when family notice my efforts. Never stop encouraging her!
Thanks M!
I am not sure about how a parent would feel. But for someone suffering from a disability, getting stared at is really awkward. Imagine you’re walking and everyone walking by stares at you. I have always thought that staring makes it even worse. Your post, interestingly, gives me a new perspective. I never thought of it this way.