Take a moment to think about the places you routinely travel within your neighborhood and community. Do you see Down syndrome? If so, where? Most of the time when I pose this question, people draw a blank. Why? Because for the most part, we live in a world that doesn’t create the spaces necessary for people with Down syndrome to live and thrive where they are. The systems may make some room for the person with Down syndrome who is considered “high-functioning,” a person who more easily fits into the spaces that already exist in our systems. But most of the time, our communities create separate spaces — special programs or classes — for people with Down syndrome.
Just this past week, I had a conversation about this with a woman while sitting in the waiting room of our chiropractor. She told me about her kids, who attend the high school in the same district we live in, and then asked, “Do you have any kids in the district?”
“Yes, I do,” I said with a smile. “I have a daughter at Mayflower, one at Monroe, and a son at Canyon.”
“Whoa!” she gasped, “I remember those days. You’re all over the place! We were at Mayflower. Good school. You like it?” This always feels like a trick question. When families move and have the privilege of choosing where they will live, often the item at the top of the list of determining factors is how good the schools are. We’ve moved a few times with our kids, and when we tell people where we’ll be living, they’ll often say, “Oh yeah! They’ve got great schools.” The thing about “great schools” that isn’t always so great is the measuring stick used to determine said greatness. Usually, the measure of greatness is based on one or two things, such as academics and sports or college admission rates. Have you ever heard of a school that was considered great, even in part, by the measure of its inclusion policies? Me neither. If we want to identify a truly great school, we need to use multiple kinds of measurement, because it’s only great if it’s great for multiple kinds of people. Back to my conversation with the woman in the waiting room at the chiropractor. “Mayflower has been a challenge for us,” I said. “My daughter has Down syndrome, and we want her fully included in her school, but this is a noninclusive district.”
“Really?” the woman said raising her eyebrows in surprise. “I didn’t know that. Maybe things have changed because when my boys were there, I remember there were students like that on campus.”
“Oh, yes,” I said. “Students with different abilities are on campus, but they’re in separate classes, not fully included.” I knew the chiropractor would be calling my name any minute, so I spoke quickly. “We believe our daughter has the right to learn alongside her peers, not in a separate classroom for people with different abilities.”
The woman gave me an inquisitive look. “Oh, I see!” She should have left it there, but she went on. “But sometimes kids like that need to be together, you know, to be around people who are like them. It’s better for them.” She said it matter-of-factly as if she knew it to be true.
While the Sriracha mama in me wanted to spew hot sauce all over her false and harmful ideology, I remembered the importance of blending my Sriracha ways with marmalade restraint and gently yet firmly informed her, “Actually, studies show that learning alongside her peers is the best way for my daughter with Down syndrome and everyone else to learn. Inclusive education is the best kind of education for all kinds of kids.”
“Heather?” the chiropractor called my name. I’m pretty sure the woman was relieved the conversation was over. Sriracha mama that I am, I could have gone a few more rounds.
My experience has been that most people think as this woman did — that it is good and necessary for my son and daughter with Down syndrome, and others like them, to have separate programs and spaces in which they can learn and grow. What they don’t seem to realize is how this way of thinking communicates to the people with Down syndrome that they are not worthy of participating in the same life with everyone else.
Once again, can you see it — how not pro-life this way of thinking and living is? If we’re going to stand for life, then do we get to decide what kind of life we stand for? No! No, we don’t. If we stand for life, then we stand for life. And if we say we are pro-life, then we better be pro–Down syndrome — and pro-black lives, pro-autism, pro-immigrant, and pro- person-with-a-physical-different-ability who still cannot enter a building (maybe even their community church) because it does not accommodate their specific mode of mobility. And if we say we are pro–Down syndrome, then we better be making darn well sure that people with Down syndrome have a place in this world to be fully embraced just as they are.
Every day we have opportunities to step into our schools, dance studios, workplaces, Girl Scout troops, and even churches and make sure all kinds of people fit in those places. We have opportunities to scoot over and make some space, not only for people with Down syndrome, but also for racial minority groups, immigrants, and people with different abilities, just to name a few.
Still with me here? Do you see how pro-life is about so much more than being anti-abortion? It’s about shouting the worth of all lives! And especially the lives of those whose worth continues to be questioned. So… the mama who finds out that her new baby has Down syndrome. What if that mama saw how well the world cared for people with Down syndrome? What if she saw us demanding that the systems in place include people with Down syndrome? What if she saw us welcoming and enjoying people with Down syndrome? Don’t you think this mama would look at her baby differently as a result? If all of us made the choice to shout the worth of people with Down syndrome, this new mama would look at her baby differently because she would see that people like her baby were included at every stage in life and in every space, and they were seen as loved, valued, worthy.
I believe the Church — the collective whole of those who love Jesus, follow His teachings, and meet together with a unified purpose to show our love for God and each other — has a powerful and important opportunity to share the love of Jesus with the world by shouting the worth of those who the world still sees as unworthy.
If the Church adopted a holistic, pro-life stance, affirming the worth not only of the unborn but also the born — especially those who are still viewed with a negative lens — the world in which we live would be radically changed. The truth is, Down syndrome is a small portion of the community of people with different abilities. According to the American Disability Act (ADA), more than 54 million adults live with some kind of different ability. That’s one in five. That’s 54 million adults who are image bearers of God, who are fearfully and wonderfully made, who are people we may be missing out on knowing because the systems in which the rest of us so easily fit continue to fail to make room for those who don’t. In fact, many of these people are unable to successfully access their neighborhood church, a fact that many of us can’t even see.
I wonder, then, if it’s even possible to know God fully if we are not in a relationship with all the image bearers of God.
We will need to make space in our systems and our lives for people with different abilities so that we have opportunities to see and understand God’s heart in new and powerful ways.
I have learned so much from my kids over the years as I’ve stepped into spaces I didn’t know existed. And the longer I linger in these spaces, the more I’ve been exposed to the injustices people such as my kids are expected to live with. And the more exposure I have to these injustices, the more determined I am to be an advocate for change, to shout the worth of my children and others who continue to be seen as less worthy based on their ability or the color of their skin.
Jesus was the greatest advocate and shouter of worth to ever live. He entered the systems in place during his time on earth, and he said, “Nuh-uh! This is not going to work, friends.” (This exact wording may not be found in the Bible.) His radical love of the underdog had all the system makers seething (remember the Pharisees?). He taught some pretty out-there stuff, such as love your enemy; forgive unconditionally; leave the many to save the one; people outside your ethnicity/gender/culture are your equals — these were, and let’s be honest, still are, radical ideas. And He spent the majority of His ministry life on earth with the people who did not fit or even have access to the systems in place — women, people with leprosy, those who were differently abled, and so many other outcasts of society.
Jesus was radically pro-underdog. He was and is the greatest shouter of worth.
So if we love Jesus, if we are familiar with His work on earth, then we can no longer say we don’t know. Because we know. And if we know, then we have the great privilege of choosing to step boldly into our roles as advocates for others. As people who love Jesus and strive to be more like Him, none of us get to sit this one out.
Advocacy is not only for those of us born into a privileged space; it is for everyone.
Even if you are among those who need others to shout your worth, there is someone sitting behind you who needs you to shout theirs.
Just imagine, then, a whole world of people who love radically, who live a lifestyle of looking beyond their bubbles to see who’s left out, who scoot over to make some room, who shout at the top of their lungs, I see your worth! You are worthy of life! Worthy of a place to live! Worthy of an education! Worthy of a job! Worthy of our love! Worthy of our forgiveness! Worthy of our positive assumptions!
When we use our voices to shout the worth of others, it drowns out all the other voices, and the world hears just one thing — the love of Jesus!
Excerpted with permission from Scoot Over and Make Some Room by Heather Avis, copyright Heather Avis.
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Are you an advocate shouting the worth of others? All of us Jesus-ladies who love radically should be! Let’s get out of our safe bubbles and see who’s left out. Let’s make plenty of room for the ones whom the world calls unworthy. Because of Jesus you and I are worthy. Every single one of us. So, let’s scoot over and shout worth! Come share your thoughts with us on our blog. We want to hear from you! ~ Laurie McClure, Faith.Full