A couple of years ago, I participated in a forum bringing together churches, accessibility advocates, and service providers in the Ottawa area to explore what “widening the welcome” could look like in our faith communities. Several adults with developmental disabilities had joined us that day to share their experiences, and one particular interaction stands out in my mind. A local church congregant turned to a visitor with Down syndrome and said, “I’m just so thankful for the joy and happiness you people bring with you wherever you go!” To be fair, she may not have said “you people,” though it was certainly implied. Returning her gaze, the woman with Down syndrome replied, “I don’t know why you think I’m so happy all of the time. I hate my life.”
Understandably, the church-going participant was taken aback. I sympathize with her initial, well-intended statement. Getting to know people with Down syndrome has been a source of joy and friendship in my life. Each person has gifts and abilities that too-often go unnoticed. As with anyone, however, they may also wrestle with depression or mental health challenges. They may face difficulty finding jobs, or be in need of services that are not provided or underfunded. Stereotypes, whether seen as positive or negative, regularly serve to justify passing by those with different life experiences – without getting to know people as individuals and as friends.
Lucas Warren is only a year old, yet already he is the face of a major multi-national corporation. Gerber foods selected his smiling photo out of more than 140,000 submissions to be their “spokesbaby” for 2018. He is the first infant with Down syndrome to be featured since the contest began in 2010.
In a time when the majority of expectant mothers choose prenatal screening during pregnancy, and 80 to 90 per cent who receive a prenatal diagnosis of Down syndrome choose to abort, positive images such as that of Lucas may be a first step in challenging and changing misconceptions and misinformation.
Amy Julia Becker is the author of several books including A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny. In A Good and Perfect Gift, Amy Julia shares the journey of discovering that her first baby, Penny, is diagnosed with Down syndrome. Through the ups and downs of health complications, challenges to faith, and the ultimate joy in recognizing that God hadn’t made mistakes with Penny, Amy Julia confronts the myths of giving birth to a baby with Down syndrome.
On Facebook, Amy Julia recently pointed out that whether or not Gerber chose Lucas based on political correctness, they “decided that to choose a child with Down syndrome meant a positive association for their brand.” In confronting the trend of images of people with disabilities as pitiable or worth-less, Gerber’s selection is “helping to demonstrate the truth that most people with Down syndrome live happy lives.”
Amy Julia concludes:
When Penny was born, I didn't know how to imagine a good future for her, and meeting real people with Down syndrome helped me to begin to see her future as one filled with possibilities for meaning and connection. Plenty of stigma and misinformation still exists, but I am grateful for images and stories that tell the truth about the lives of people with Down syndrome like little baby Lucas, like Penny, and like hundreds of thousands of other beautiful people around the globe.
Amy Julia’s insights echo the sentiments of Lucas’ parents. His mother, Courtney Warren, hopes that the selection of Lucas will help bring much-needed awareness about children with disabilities and their families.
“[People with disabilities] should be accepted, not based on their look (sic) but based on who they are.” Courtney was concerned about how the world was going to react, but Today hosts responded that she didn’t need to fear. As they shared Lucas’ story, they warned viewers to “be prepared for utter cuteness.” Now, in response to Courtney’s concerns, the hosts provide reassurance: “Lucas, you are the ideal baby.”
It is no wonder that the world loves baby Lucas. He is indeed the “ideal baby.” Yet, in an image-saturated culture, perhaps he is seen as ideal not because of who he is, but because of who he lets us believe we are. As freelance journalist and father of a son with Down syndrome David M. Perry tells CBC, Lucas is “conventionally cute.”
Just because a toddler who fits our mold for “adorable babies” also happens to have Down syndrome does not mean that significant social change is taking place. As we share posts and pictures of Lucas on social media, we may pat ourselves on the back for being progressive, disability-loving social media justice advocates. All the while, we do not need to confront our presuppositions and conventional ideas about what makes a baby perfect, or what constitutes a “good and perfect gift” in Amy Julia’s words.
As we celebrate Gerber’s choice to select a baby with Down syndrome, we may be tempted to use our applause as an excuse to keep our hands clean from advocacy work that makes a real difference in the lives of families who experience disability. How might we better support expectant parents before they undergo prenatal screening? Without misrepresenting potential health challenges, how might they get to know children, adults, and families who experience Down syndrome and hear their stories?
How can we advocate with the government and with community groups for better supports and services through the whole life-cycle of people with Down syndrome? Disability goes beyond the adorable childhood phase, through the complexities of adolescence, and into realities of adulthood. We need companies like Gerber to go beyond featuring a baby with Down syndrome to commit to hiring people with disabilities into jobs with livable wages, for example.
At Christian Horizons, we believe that if Lucas is an “ideal baby” it is not because he is utterly cute or always has a smile on his face, but because he is created in God’s image. Lucas is worthy of full value and respect whether or not he wins a photo contest. Each person has gifts and abilities to contribute to our faith communities and Canadian society as a whole. Lucas is a gift because he has been given by a Creator who looks beyond the photo-op to the person underneath. As God reminded Samuel, “The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart” (1 Samuel 16:7, NIV).
Christian Horizons provides a variety of services to people and families who experience disability in Ontario, Saskatchewan, and around the world. These include supported employment opportunities, programs for transition-aged youth as they age out of the school system, and supported independent living. In all of our services, our vision is that people with exceptional needs belong to communities in which their God-given gifts are valued and respected.
One way to take a next step is through Christian Horizons Family Retreats. At various times throughout the year, in several locations, volunteers come together to support families to vacation together with their family member(s) with disabilities. Some of these families haven’t gone on vacation together in over a decade because of their support needs. Family Retreats enables them to do so and to reconnect with one another, to other families with relatable experiences, and to their Christian faith.
It is at these retreats that I can go beyond photos and Facebook “likes” to get to know people with disabilities and their families. I have listened to how challenging it can be for parents to talk about their kids. They feel free to share their many wonderful experiences, yet fear to tell the difficult stories in case it reinforces negative stereotypes. Family acquaintances are often quick to offer words of sympathy or encouragement, but slow to journey alongside these families as they encounter health challenges, setbacks, or decreases in funding. At these retreats, my own three kids have developed rich friendships with other children with and without disabilities. At a time when fewer babies with disabilities are brought into the developed world, this is rare and wonderful opportunity to meet kids who experience life differently.
The journey of parenting children with exceptional needs, as I have come to learn, is not always easy. People with disabilities, as the lady with Down syndrome at the church forum illustrates, are as complex and multi-faceted as anyone else. In this complexity – the vulnerability and strength of being human together – comes great opportunity to grow, to contribute, and to celebrate together the rich diversity of Canadian society. If the Gerber photo selection and resultant social media frenzy are a baby-step towards realizing our need for robust societal inclusion of families with disabilities, then “click” away.
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