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Nothing had prepared us for this moment. Every check-up confirmed a healthy and normal pregnancy. The labor and delivery went relatively smoothly. But about two hours after we held our newborn son for the first time, we found ourselves surrounded by a team of doctors and nurses with serious looks on their faces.
"Your son is exhibiting characteristics consistent with Down syndrome."
I remember looking down at my wife Josie as she held Griffin in her arms. She looked back up at me with tears in her eyes and a look of desperation on her face. The room began to spin as we tried to absorb the news.
That night I didn’t sleep much. I tossed and turned, wrestling with the fear that my life was over. The one time I fell asleep, I awoke in a panic as questions bombarded me. What will this mean for our family? How will we be able to afford all the medical bills? Will Josie and I ever get to be empty nesters? (I was looking forward to that)
I don’t remember much about those first few weeks. It was all a blur.
But one thing I do remember was a dynamic I experienced pertaining to all my fears. When I thought about Down syndrome apart from Griffin, I experienced panic-level fear and anxiety, but when I held Griffin in my arms and was present to him, all my fears disappeared. Holding disability in my arms removed the fears about disability that were swirling in my mind.
We’ve been parenting Griffin for ten years now, and this dynamic still captures my own transformative journey in relating to disability. I’ve experienced a transformation from fearing those with disabilities to embracing those with disabilities as dear friends who have come to enrich my life in countless ways. And while there’s much I hope I’ve given him, the truth is that he has given me much more.
A Few Common Pitfalls to Avoid
I want to be patient and grace-filled, knowing that it took having a son with Down syndrome to transform how I see and relate to those with disabilities. At the same time, raising Griffin has also made me acutely aware of how much we all need to experience a transformation in this area. Interacting with and watching others interact with Griffin has often been painful. Over the years I’ve noted several common pitfalls we’d be wise to avoid.
The Pitfall of Prejudice
Our society has undeniably made major progress toward inclusion, particularly over the last 50 years. The practice of institutionalizing individuals with Down syndrome began to significantly decline in the 1970s and has been gradually replaced with community-based support and inclusion. All of this is to be greatly celebrated. Yet the truth is that we still have a long way to go.
Despite the fact that inclusion has become a widespread cultural value, those with disabilities still experience exclusion, prejudice, and bigotry.
Just a few weeks ago, we took Griffin to an appointment with the middle school band teacher to explore instruments that Griffin might be interested in playing. Every child transitioning to middle school gets this opportunity. As an aside, music is also Griffin’s passion. He has great rhythm, has learned most of his vocabulary through song, and has music lessons once a week for as long as we can remember.
When we got to the appointment, the music teacher interacted with Griffin for about ninety seconds (not the full fifteen minutes) and then told us Griffin would be a better fit in general music. She then proceeded to her next appointment with another prospective student, one without a disability.
Let’s give this music teacher the benefit of the doubt.
She likely did not have any malicious intent, nor was she consciously aware that her actions were discriminatory. However, it is important for us to be able to see and name what transpired in that moment. The teacher, rather than giving Griffin the same time and attention as every other student, dismissed Griffin while then giving her attention to a more capable student.
This is the first pitfall to avoid. We must learn to be able to see and name discriminatory attitudes and actions within ourselves and others so that we can be part of creating a more equitable culture.
The Pitfall of Blindness
If one pitfall in relating to disability is prejudice, a second pitfall is the opposite — disability blindness.
A few years ago, Josie and I were talking with another parent after picking Griffin up from school. At one point Griffin became the topic of conversation and the woman commented, “When I look at Griffin I don’t see his disability. I see Griffin just like every other kid.”
I can appreciate the sentiment behind this statement as it seeks to counteract the pitfall of prejudice by validating Griffin’s intrinsic value and worth as a human being. The problem, however, is that it fails to see that Griffin is, in fact, not like every other kid. Griffin has a real disability called Down syndrome. And with Down syndrome comes a whole set of challenges that Griffin experiences that other kids do not. Failing to see and acknowledge those challenges does the work of keeping these challenges at a distance.
While prejudicial attitudes and actions are more hurtful and destructive, affirming Griffin’s worth by negating his disability is also damaging.
The Pitfall of Pity
There is a famous book entitled When Helping Hurts that details how our well-intentioned efforts to help relieve poverty can actually do harm when it fosters dependency and overlooks the dignity and capacity of the poor. What’s more, is that there is often a disconnect among those helping. We feel great about providing help while failing to recognize that our helping is hurting. The book calls for a shift away from pity toward a more relational, empowering, and participatory approach to poverty alleviation.
A similar point can be made when relating to those who are disabled. While many programs exist that afford individuals an opportunity to serve those with disabilities, our relational posture within those spaces will determine if our efforts are helpful or hurtful.
When we relate to individuals as objects of pity — focusing primarily on their needs and the positive feelings we get when serving them — our helping will end up hurting. And it’s tricky because in serving those who are disabled we might think we are modeling inclusion, despite the fact that we aren’t actually befriending those with disabilities such that they become part of the relational fabric of our lives.
Many people interact with Griffin kindly and respectfully, but few are interested in actually becoming his friend. And that’s the difference between pity and presence.
Going Beyond Inclusion
When we consider how Jesus related to those with disabilities, it’s clear that he not only avoided these three pitfalls, but challenged them directly.
When Jesus encountered an individual with a disability, he did not pretend they were healthy and fine like every other person. Rather, he moved toward them with compassion, while simultaneously affirming their dignity and acknowledging their disability. When Jesus healed those with disabilities, he was disrupting cultural scripts and societal expectations that were dehumanizing and rooted in prejudice. And far from treating those with disabilities as service projects to make himself feel better, Jesus established friendship with those who were disabled — inviting them not only to be part of a new community, but actually to participate and contribute within it.
I’m convinced that mere inclusion isn’t enough.
If we, as followers of Jesus, are going to live into the way of Jesus, we must pivot from pity to presence, from charity to community, from fixing to fellowship, from sympathy to solidarity, from treating the disabled as problems to be helped to people to be known.
Reflection Questions
- When have I felt fear or discomfort around disability, and what assumptions fueled it?
- Of the three pitfalls — prejudice, blindness, or pity — which am I most likely to fall into?
- Who in my life with a disability could become a friend rather than someone I merely include or serve?
Practices to Cultivate Belonging:
- Name What You See – Notice moments of exclusion or subtle dismissal and acknowledge them, either to yourself or gently in conversation. Awareness is the first step toward change.
- Practice Presence Over Projection – Spend time with someone with a disability, listening and observing without letting assumptions guide your interactions. Focus on their personhood rather than your narrative about them.
