Sometimes Words Wound: The Uncomfortable Work of Becoming Communities Where All Belong

If you or someone you love experiences disability, then chances are you’ve heard your share of stereotypes, strange sentiments, or even wounding words. Here is just a small sampling of some of the things my husband and I have heard over the years about our youngest child, who has Down syndrome:

1. What was said: “Isn’t it unfair that one of your children demands so much more of your attention than the others?”

• What was communicated: Fairness means everyone in the family gets the same thing, regardless of what each member actually needs. (Where's the logic in that? Imagine if, when we served dinner, everyone got the same portion size? Some would leave hungry and others sick.)

2. What was said: “You have to understand, kids with special needs are draining our school budgets and taking away resources from the other students.”

• What was communicated: Some kids are more deserving of school resources than others.

3. What was said: “Now that he’s in an inclusion classroom, it’s your [the parents’] job to keep the developmental gap between him and his peers as narrow as possible.”

• What was communicated: Your son’s welcome and acceptance depend on his performance.

4. What was said: “I don’t think our summer camp is a good fit for your child.”

• What was communicated: We are unwilling to imagine a place here for your child.

5. What is often said: “He’s so high functioning.” 

• What is communicated: We don’t expect much of people with intellectual disabilities.

6. What is often said: “Downs kids are so ____.” (Fill in the blank with a stereotype. Examples include happy and innocent).

• What is communicated: People with Down syndrome are mostly all alike; their disability defines them.

7. What was said: “We can’t treat your son at our emergency room because it’s too risky. You’ll need to go to a bigger hospital.”

• What was communicated: We don’t want you to sue us.

8. I often get asked questions that are meant for my son, as if he’s not present or can’t answer on his own.

• What is communicated: He’s not capable of understanding, speaking, or both.

Navigating ableism among well-meaning people adds an extra level of complexity to the everyday challenges of parenting. None of the comments above were intended to do harm to me or my child with a disability. But they do harm, nonetheless.

In these moments, I am never quite sure how to respond. Should I be honest and let the speakers know how their words or actions wound? If I do, will they think I am being too sensitive? Will I hurt their feelings, when they weren’t meaning to hurt mine? Will the suggestion that their words wounded drive a wedge between an important relationship my son needs me to maintain in order for him to access his community? Will they drive a wedge between me and a friend I love?

Organizing a caring response to comments like these often takes longer than a conversation lasts. Certain practiced responses come easier. I’ve learned to restate people’s comments using people-first language.

To the person peddling stereotypes about “Downs kids,” I say, “People with Down syndrome each have their own, unique personality.”

To the person who says, “He’s so high functioning” I reply, “He is a smart boy, if that’s what you mean.”

In response to getting asked a question really meant for my son, I look at him, repeat the question, and let him respond.

The many staring strangers usually get a hearty hello and an introduction to our family—my son handles that one himself.

But to the institutions, organizations, and health care workers who sometimes turn us away, I must weigh the options. When the goal is the best education, the best medical treatment, the most welcoming community, I must ask myself whether the fight will gain my son access to what he needs.

When the answer is yes, I advocate. When the answer is not necessarily, I retreat. We found our son better care at an urban emergency room, but we wasted precious hours in the process. He didn’t have to go to that summer camp, but the fact that he couldn’t meant he wasn’t present in a space where his peers were having fun, forming friendships, and building history together.

Erik Carter, author, professor, and executive director of the Baylor Center on Developmental Disabilities at Baylor University, conducts research and speaks nationally about disability and belonging. Carter collected data by interviewing thousands of families. Repeating patterns emerged, and he was able to identify 10 qualities that characterize true community belonging, something he calls a “universal human need.” According to Carter, belonging means being “present, invited, welcomed, known, accepted, supported, heard, befriended, needed, and loved.”

Too often, people with disabilities experience community belonging as conditional—as long as including them doesn’t require too much effort or money, they’re welcome. (Not much of a welcome is it?) Some comments, actions, and assumptions convey the message that our son needs to change, keep up, or be someone different to belong.

Words wound, even when we don’t mean them to.

Sometimes, people tell my husband and me they’re nervous to say the wrong thing around us. I understand. But we also appreciate honest questions, and experiencing the discomfort of saying the wrong thing is a wonderful corrective. Otherwise, how will any of us learn to say the right things?

I’m still learning, too. Once upon a time, being in the presence of a person with a disability made me feel uncomfortable. Receiving my son’s diagnosis at first felt tragic, but that had everything to do with my incorrect assumptions about disability and nothing to do with the beautiful baby we had welcomed into our family. I quickly realized my wrong ideas were learned; but they could be unlearned, too.

The hospital geneticist, for example, gave us our first lesson about Down syndrome by explaining the many things our son would never do and the myriad medical problems he would potentially face. Ouch. While this was information we would need to learn eventually, it wasn’t the first thing we needed to hear about our brand new baby. “Congratulations, he’s beautiful. We are going to help you give him the best care possible,” would have been sufficient.

A couple days after that conversation, however, a nurse came to our recovery room. She carried a family photo album. Handing it to me, she offered me my second lesson about Down syndrome. “My daughter is 27. She has Down syndrome, too.” She told me stories about her family as I looked at pictures of her three children growing up together—family vacations, the first day of school, graduation, prom, a new job. Having Down syndrome isn’t bad, she assured me, it’s just different.

Sometimes words heal.

Recently, I read Dr. Amy Kenny’s 2021 book My Body is not a Prayer Request. In it, she explores the need for disability justice in our communities and specifically in churches. Many of her lived experiences felt unfamiliar to me. I learned about ableist words or phrases I have used. I learned about the ways my words sometimes wound.

I point this out because even I—the mom of a child with Down syndrome—may say or do the wrong thing in the presence of a person who experiences disability differently than our family does.

At times, I felt defensive while reading Kenny’s book. But I’ve learned to pause and evaluate this bad feeling that often uncovers a way I need to change. I welcome the discomfort, because those unpleasant moments hold potential. I can lean in. Listen. Learn. Apologize. And hopefully, better participate in the beautiful, messy work of human flourishing within our communities.

Communities of belonging communicate this simple truth to all members: The space you take up in the world and the way you inhabit it is unique and necessary to the well-being of all of us. All of us, my son included as he grows and matures, can improve our ability to communicate those good words and that kind of welcome.