Does Disability Mean Tragedy?

What we believe about disability shapes how we live, love, and relate. {Plus 2 days I won't forget and 5 things worth your time}

May 08, 2025

Is disability a tragedy? Is it a gift? What place is there for grief and for joy in this story of disability so many of us are living within our families?

After RFK Jr., the current head of the Department of Health and Human Services, made public remarks in which he called autism a tragedy that destroys families, I reached out to Matthew Mooney, co-founder of 99 Balloons. I contacted him because, on the one hand, I wanted some help naming the problematic thinking behind RFK's remarks. On the other hand, I wanted some help considering why so many parents of disabled kids might find solace in what he had to say.

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I read a beautiful essay by Emily May, titled "Kennedy Described My Daughter's Reality." She writes:

"[RFK’s] remarks echo the reality and pain of a subset of parents of children with autism who feel left out of much of the conversation around the condition. Many advocacy groups focus so much on acceptance, inclusion and celebrating neurodiversity that it can feel as if they are avoiding uncomfortable truths about children like mine."

I've been thinking about these issues for many years. Will Penny have Down syndrome in heaven? is a question that I asked myself after she was born, and one that many people ask me regularly. I wrote an essay for Vox a few years back about whether or not I would "cure" Penny of Down syndrome if I could. All this pondering, plus the lived experience of a child with an intellectual disability and our introduction to the disability community more broadly, has led me to a few conclusions amid all my ongoing questions:

One, that human brokenness and human limitations are not the same thing.

Two, disability and suffering are not the same thing.

Three, that every human has limitations, brokenness, and possibility.

And, finally, four, that I will never have all the answers to all the questions, which leads me back, as Matt speaks about in this episode, to the relationships at the heart of the matter.

A dark, earthy-toned image of a cracked clay pot with gold-filled seams (in the style of kintsugi) sits against a textured background. Overlaid white text reads: “Human brokenness and human limitations are not the same thing. Disability and suffering are not the same thing.” Words in italics are bolded for emphasis.

Our approach to disability as a society needs to make space for both lament and celebration, sorrow and joy, grief and embrace. I hope this conversation at least helps us head in that direction. Please listen (or watch) and then share this episode with a friend. And I want to hear from you. What did you think of RFK Jr’s comments? What place do you see for grief and for joy in this story of disability?

Amy Julia

10 Ways to Move Toward A Good Future

{Especially for families affected by disability}

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Grief and Disability

from Matthew Mooney on the podcast

When a family receives a diagnosis—when they learn their child has a disability—grief often follows.

Matthew and Ginny Mooney define grief as:

“when the reality of life does not meet the expectations that you had.”

Grief shows up in the gap between what you expected… and what actually is.

That gap can be painful. We must have grace and tenderness for families in that space of grief. As friends, as a community—we come alongside them in love.

BUT this needs to be said:

The world should never grieve our children.

Our communities do not have the right to expect who our children “should” be. Instead...

The responsibility of our churches and of our society and of our cultures—when they meet our children—is:

to embrace them
to provide them whatever support they need
to meet them just as they are.

TO OUR COMMUNITIES:

Our children are not less.
Our children are not tragedies.
They are not yours to grieve.
They are yours to love and welcome and support. 💛

2 Days I Won’t Forget

A day of intergenerational and interability friendships

collage of photos of Amy Julia, Marilee, and Penny with Hope Heals friends

I feel like I should be too old to have camp friends, but I guess that’s one more gift of getting involved in Hope Heals. Our friend and Hope Heals cofounder Katherine Wolf was speaking nearby, so the girls and I met up with her for dinner. Penny’s dear friend and mentor Caroline Young surprised her and came along for a short but sweet reunion.

Italian food, too many people in a too small car, a long line for ice cream on a warm spring night, laughter, and the joy of intergenerational and interability friendships—my heart is full.

A day where I could say, “This is a first!”

collage of photos of Amy Julia speaking at event mentioned below — images by Joshua De Leon

Not a tragedy. Not alone. Not without hope.

These were the ideas I shared with the families at Walnut Hill Community Church in my first live, in-person Reimagining Family Life with Disability workshop last Saturday.

Our family stories are different. We represented parents of children from six months to 33 years old and with a whole range of disabilities. But all of us were grateful to talk about the truth of who our families are and how we can delight in our children, give and receive support in community, and envision and walk towards a good future.

Thank you, Walnut Hill, for hosting this beautiful morning!

5 Things Worth Your Time

NOVEL: Tell Me Everything by Elizabeth Strout

This novel is my favorite of Strout’s that I’ve read so far, telling the story of very ordinary people living ordinary lives of care and selfishness and love and pain in a lovely but also rather ordinary town in Maine.

MOVIE: A Complete Unknown

Peter and I both loved this biopic about Bob Dylan’s early years in New York City as he rose to stardom and refused to be boxed in as an artist. I was reminded of the reasons Dylan won the Nobel Prize for literature, and it also made me wonder whether genius comes along with misanthropy by necessity.

EPISODE: Lisa Damour: How to Talk to Teenagers

I sent this podcast episode to all my friends who are parents of or work with teenagers.

STUDY: Measuring the Good Life

I’m so fascinated by the human flourishing study out of Harvard and Baylor, particularly when it comes to the factors that make up a “good life.” The data suggests that “economically developed countries have high average scores for self-rated financial well-being, access to education, and life evaluation. Yet poorer countries have higher scores for positive emotions, meaning and purpose, character and virtue, and social connection and relationships.” In other words, money doesn’t buy happiness, and it certainly doesn’t buy connection. Moreover, the data suggests that

“countries with the greatest wealth and longevity may have achieved these goods at the cost of a fulfilling life… for most people, flourishing is found above all in dense and overlapping networks of loving relationships.”

THE BIBLE PROJECT: The Seven Women Who Rescued Moses—and Israel

If you’ve ever wondered whether the Bible has a subversive message within a patriarchal culture about the significance of women, this podcast episode is for you. Such an amazing and powerful and encouraging exploration of the role of women in the Exodus story and throughout the Bible

What about you?

What are you pondering, reading, watching, or listening to these days?

Reimagining the Good Life

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