One of my favorite stories that my mother tells about my youngest brother takes place in an airport bathroom. My mom was holding my brother in her arms when an older woman smiled at him and said, “Oh, aren’t you just an angel?” My brother, grimacing, responded with an emphatic, “No!”, much to my mother’s embarrassment.
This woman’s positive reaction is a common one toward my brother, who has Down syndrome. I find that as people strive to treat my brother and others like him kindly, they often make mistakes that, while well-meaning, fail to recognize the full personhood of those with disability.
I am certainly no expert and know that disability takes a myriad of forms, but here are four mistakes I’ve observed in my own experience as the sister of someone with Down syndrome.
“They’re always happy!”
A common reaction to meeting my brother or hearing that I have a brother with Down syndrome is an eager affirmation: “Oh, I love people with Down syndrome — they’re just angels!” Or, “People with Down syndrome are always so happy and loving!”
I would invite anyone who thinks this way to spend a few hours at my house — you will learn very quickly that my brother is no angel. While he is often happy and loving, he also gets mad at me and mutters under his breath, “Stupid girl.” He gets stubborn and angry when things don’t go his way, and very vocally protests bedtime or someone else using the TV when he wants to watch something.
His life is a mix of the same delights and trials that any of us encounter, and he bears them with the same mix of joy and frustration we all do. He has a personality and identity all his own — as do all people with Down syndrome — that cannot be surmised entirely from the knowledge of his having a disability. In short, he is human. When someone suggests he must be happy all the time, they fail to recognize his humanity in all its messy reality.
“They’ve been sent here to teach us!”
This is a comment I have seen often online. People look at the lives of those with disabilities and comment on how they must be sent to teach us how to love or to be better people. This attitude once again views people with disabilities as less than human; they instead become instruments of learning for us “normal” people.
While I have been deeply formed by my brother’s presence in my life, my formation is not his reason for existence or his only end in life. His reason and end are the same as anyone’s: to know, love, and serve God in this world and be happy with him in the next.
“Look at how much they can do!”
I will be the first to admit that I love to read stories of the incredible things people with Down syndrome achieve all over the world. Athletes, actors, business owners, models — these success stories give me hope and offer a firm rebuttal to the outdated stereotype still prevalent in today’s culture that people with Down syndrome will never walk, talk, or live any kind of “normal life.”
It is of utmost importance, however, that we do not begin to use these stories as justification for the worthiness of a person with Down syndrome’s life. Our culture is broadly focused on achievement as a measurement of worth, but it becomes a matter of life and death for people with Down syndrome and other disabilities. If we point to these examples of achievement and say “see, people with Down syndrome can do all this and that is why their lives are worth living,” we fall into the trap of measuring the value of a life according to its achievements and independence.
Where does that leave people with Down syndrome and other disabilities who live more average lives, who may never be known for their athletic feats or dramatic roles? Or, even more urgently, what of those people with more severe disabilities or health issues who will remain dependent on others for care all their lives? Who may never walk or talk, who may not even live past childhood?
These lives too are deeply worthy and valuable. As important as it is to celebrate the achievements of people with disabilities and continue to break down stereotypes, we must never allow these achievements to become our “evidence” as to why they deserve to live. Every life — regardless of achievement, ability, or any other factor — is valuable and full of inherent dignity.
“Your family is so strong!”
While I do think that families who have a member with a disability may offer a unique witness to love, I am frustrated by the suggestion that we are especially heroic because of how we love and care for my brother. This admiration implies that loving and caring for him is an especially difficult thing to do.
My family does bear particular difficulties due to my brother’s Down syndrome, but these difficulties are not something we overcome through heroic virtue to love him in spite of who he is. Rather, these difficulties exist primarily because of how deeply we love him.
It is difficult to watch someone you love deal with numerous health issues, as my brother has. It is difficult to watch him struggle to reach milestones that typical children breeze by. Most of all, it is difficult to know how much of the world thinks our lives are made difficult by him. It’s even more chilling to know that many people think both he and we would be better off if he had never been born — that it would have been an act of mercy to end his life in the womb.
My brother is not a burden my family carries — we don’t manage to be positive about his role in our lives in spite of the obstacles. Rather, knowing and loving my brother is among the greatest gifts of my life. Caring for him is a privilege I miss dearly when I am away from home.
Ultimately, these are not the most damaging ways the world could see people like my brother. And yet, these attitudes nevertheless contribute to the dehumanization of people with Down syndrome, however well-meant. It is important, as always, to examine our words and attitudes towards others and do our best to recognize the full and intrinsic human dignity of all people.