We love the stories of people with disabilities accomplishing great things or “beating the odds.” Beethoven was deaf – he’s one of the most recognized composers of all time. Helen Keller was the first deaf and blind person to earn a college degree – she was an author, political activist and lecturer. Stevie Wonder was born blind – he’s an accomplished and beloved musician.
I see this theme play out when it comes to other disabilities. My youngest daughter has Down syndrome, so I try to keep up with the many happenings in the Down syndrome community. I’ve read articles of people with Down syndrome earning college degrees. I’ve watched viral videos of individuals with Down syndrome and marveled at the clear speech, the eloquence, the powerful messages, the TED talks. I’ve read of kids with Down syndrome winning spelling bees, reading better than their typical peers, taking standardized tests with no accommodations.
We share the videos and the articles, and we say, “See, look at what is possible, people with Down syndrome can accomplish great things!” And it’s true, people with Down syndrome can accomplish great things. But sometimes I feel these stories are highlighted to justify why people with Down syndrome deserve a chance, why they should be accepted. “See, they’re almost ‘normal.’”
I’m afraid that when we only focus on the stories of the individuals who are an exception, we do a disservice to the vast disability community as we fail to show the wide representation of disability.
Perhaps it is because whether we want to or not, we are all susceptible to the messages that permeate our society: talent, performance, and intellect are what matters most, and the more you fall away from that, the less value you have in society. These are ideas that have been present for as far back as we go, across cultures and beliefs.
The truth is this was something I had to wrestle with when my daughter was first born. I thought, “For as long as she turns out to be as great as Pablo Pineda, it will be okay.”
But my child is not the exception, she is the average. Perhaps in some areas she struggles a little more, but this I know: her life has just as much meaning and value as mine or the person with the higher IQ, and her life is beautiful. She has much to offer and contribute to this world and those around her. I know from a personal standpoint, she has been the most influential person in my life, she has changed me for the better, and I like to think that her influence in me has spread as I relate to others. She has also made me frustrated when she’s not listening or refusing to obey, made my heart melt when she hugs me tight and tells me she loves me. She’s a full person.
And her life matters. Her story matters. Yes, we need to show the world the kids with Down syndrome beating the odds, but we also need to show the kids with Down syndrome who are non-verbal. We need to show the kids with Down syndrome who have a dual diagnosis of Down syndrome and autism. We need to show the kids with cerebral palsy who can walk, and the kids with cerebral palsy who use a wheelchair, and the kids with cerebral palsy who need total care and support because of their limited mobility. And we need to show the kids with autism who are on top of their class, and the kids with autism who are non-verbal. We need to show the world the vastness of disability.
It is about living life to the fullest, and that looks different for every person.
All stories matter.
All life has value.
My daughter has Down syndrome. She is not the exception, she is herself. I don’t want her to be “normal,” I just want her to be her. To me, she’s perfect exactly the way she is.
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I totally agree. I often feel the same way as my daughter has a rare syndrome and it doesn’t get much publicity or advocacy. My daughter is a whole person too. Thanks for bringing this issue to the forefront.
Well said. I agree fully. That’s why I am always iffy when people want to take my daughter’s picture. I dont want her to be the poster child for any thing. She is herself. Each and every life has meaning, purpose, and value. Not only if the world acknowledges it but because of who they are, and who made them.
Dana, are these strangers asking for her picture?
This is a well-written post, and you make a good point. I think many marginalized groups suffer from the same narrow representation. When you see a Black person on a TV show, he or she is often light-skinned with almost White-looking features. The Black people who are considered the most trustworthy usually speak in Standard English with little trace of a Black dialect. Immigrants who have strong accents and make grammar mistakes are often mocked and belittled, as if their ideas become less important because they’re not communicating them in the “correct” way. Most plus-size models are actually fairly average in size and have unusually small waists. It’s okay for polygamist Mormons to have their own TV shows, but God forbid gay people’s relationships be anything other than monogamous or society will stop giving them equal respect to straight people. Caitlyn Jenner could afford the surgery and styling to escape the appearance of her assigned gender, but many transgender people who look more androgynous are harassed, beaten, and sometimes killed – let alone not shown in magazines!
We absolutely need to acknowledge that there are many, diverse ways to live a fulfilling life regardless of how close to the societal norms a person may be. People need to realize that when we acknowledge and accept everyone’s differences, it allows all of us to act like our true selves without fear of not meeting the accepted standards. Often times, people only find true contentment when they give up on the idea of fitting into a mold that other people have made for them. Life isn’t a contest to see who can be the richest, most famous, most powerful, busiest, fastest, strongest, highest-scoring, most popular, most conventionally attractive, least “weird” person out there. Life is a gift for us to enjoy!
I wholeheartedly agree. My son has autism and I remember when my father used to find examples of people with autism who went to university and achieved great things. My father doesn’t do it now, because now that my son is 15 it is clear that he is not going to go to university and will be lucky to live independently. Am I any the less proud of him? No way! For him, being on time in the morning is an incredible achievement. He gets himself washed and dressed and shaved! This is fantastic.
Jesus always made sure to notice those that others overlooked. He never viewed them as less-than, in fact often he held them up as examples. My dear boy is the way God made him and I love him for who he is, not what he can or can’t do. Besides, how many kids do you know who can tell you what time the sun rises and sets every morning? Or what radio frequencies every radio station is broadcast from and where its transmitter is? Bless him, he’s wonderful. Such a sweet boy. He even said to me once, in a moment of profound lucidity, “I am not autism!”
Ellen, thank you for writing this so eloquently. I long for the day when our children will be more than a face of inspiration and be valued just for being who they are regardless their poster quality. All of us are very real people with independent wills and the need just to be acknowledged for who we are without others trying to change us to help us fit in society.
Wonderful post!
My son, who has Down Syndrome was given quite a bleak prognosis…and people were amazed when he began meeting milestones. After a while, the amazement changed to disdain because he STILL had delays…we were ostracized at church because he didn’t behave like the other kids. I remember how much I loved watching my grandmother admire his imaginative play…not because it was like the other kids, but because it was creatively him!
He is older now, and still delays, more needs than others his age and quite a collection of obsessions, but he is who God made him to be…and his greatest obsession is the Bible.
He is uniquely him.
Thank you Elle. I wish I lived next door to you. I need someone around me w your perspective. I want to see my kids the way you see yours. I know you are on a journey. And so am I. And grief and acceptance have its own waves and rhythms. My daughter told me last night I make her feel like a failure. It’s tough to just accept sometimes. And not want them to achieve. So I told her I was sorry and I was more of a failure than she was and I didn’t want to make her feel that way. Sigh. One. Foot. In. Front. Of.the. other…..
Earline, praying for you. The fact that you apologized is huge, and parenting is not easy. Sending you hugs.
Fabulous blog! I totally agree! Each of our kids are prescious now what their abilities or needs are.
Muchalone and others do you feel isolated by people who not get our children or do not want to make accommodations so that are children can be accepted, included and valued? This is is something we continue to struggle with… as Temple Grandin (adult with autism) said “different but not less”. So true! Thanks for doing what you do Ellen!
I think isolation is very real for many of us. Did you get to listen to the podcast Erin and I did on isolation? https://www.ellenstumbo.com/episode4/
I’m a parent in the UK and I get a lot from your blog posts. I have a daughter with a rare syndrome who is not pretty, nor intellectually gifted, nor does she have any talent. I have always struggled with the exceptions too, as seeing the disabled children who live a normal life just makes me feel even more down for my daughter than I already do. And I know she’s affected by it too, and she has low self esteem about her looks and abilities. The fact that she’s a total peach, funny and kind and excited by life isn’t recognised as valuable in society. Thank you so much for this post, this is an issue close to our hearts in the UK too
Susie, keep reminding her of the funny and kind person that she is, affirming her. We know how hard the world can be for some of our kids. I try my best to bring up the ways in which my kids make my life brighter and better, and everyone has gifts and talents, they might just be different from what the world “praises” but gifts nonetheless. .
My son is 28, and he does amazing things. But they are not always the things that are considered amazing for a 28-year-old. It’s easy to read those wonderful articles about gifted people with Down Syndrome and feel like a total failure because my sweet boy will probably not ever drive or get a college degree or run his own business. But when he jumps up at the end of our staid Episcopal Easter church service and yells, “Alleluia!” I know that he understands some things better than most people!
I love this, yes!
Well said, Ellen. Something that’s been on my heart, too. Thank you.