One of my son’s friends at school is a 10-year-old boy named M, and both boys have Down syndrome.

M comes from a Catholic family. He’s the son of a single mother, and is raised with the help of loving grandparents. In short, they are precisely the kind of family at which Amoris Laetitia, the new papal document on marriage, love, and family, is aimed.

Unfortunately, a few years ago, when M’s mother started talking to her parish about enrolling her son in the religious education classes required for attending communion, she was rejected. The parish had no idea how to instruct M into becoming an active member of the faith community.

M’s story was on my mind as the people who run @Pontifex tweeted:

These lines come directly from Amoris, and mark one of four places in the document that address disability and family. Unfortunately, both this tweet and its broader context render the disabled family member as object rather than agent, as an opportunity for the able person to demonstrate their goodness rather than a person who might do good themselves, and perpetuate the myth of the disabled individual as eternal child.

Although charitable in sentiment and kind in intention, such paternalism isn’t what disabled people really need.

Here’s a quick summary of the assertions made by the four relevant passages (quoted in full here), beyond the “gift” sentence.

  • Families need to accept “people with special needs.” We should greatly admire families who “lovingly accept the difficult trial of a child with special needs.”
  • Families who accept people with special needs will come to value human life more generally.
  • There’s a link between immigrant rights and disability rights.
  • Love shown to disabled family members reveals the value of “fraternity,” in the context of having big families.
  • Finally, larger families should support people in need, from single mothers to addicts, with, “persons with disabilities needing particular affection and closeness.”

None of this is bad. Many religious traditions, including some strands of historical Catholic thought, have asserted that disability can reveal punishment for sin (either in the disabled person or in their parents). I’ll gladly take charity and special status over such stigmatizing ideas.

And yet, I’m struck by the narrow view of disability within the text, and the barriers it imposes between disabled and abled family members. Where is the papal message to disabled children about how they might respond to their families? More critically, where are the disabled parents?

Around the world, disabled parents face intense discrimination. They are too frequently stripped of their parental rights based on assumptions that disability renders them unfit. Wouldn’t this be a natural subject on which the papal position on the indissoluble nature of the family would be relevant?

I spoke to Kayla Whaley, a freelance writer and senior editor at Disability in KidLit, about the tweet.  She was one of many disabled individuals who took to social media, a highly accessible space, to express their disappointment in the papal tweet.

In her tweets, collected here, Whaley emphasized that she is not here so other people can show how good they are.  She also told me, over email, that she’s very concerned about Pope Francis using his status to promote a view of disability that marginalizes disabled people.

“The idea of disabled people (and especially disabled children) as ‘gifts’ is a widespread and deeply held belief, both within Christianity and in secular society,” she wrote. “The pope used his incredible reach and influence to reinforce that belief.”

As the father of a boy with Down syndrome, I’ve frequently been told that people with his condition are God’s “special angels.” I’ve always rejected this idea. I’d rather he was called an angel than some pejorative slur, but mostly, I hope people see him as fully human.

Better theologies of disability and the family would open pathways to witness and embrace our shared humanity, regardless of the functioning of our bodies and minds, and understand that all of us need the opportunities to be both actors and be acted upon as we pursue a good life in our communities.

As for M, the next parish over was willing to take him in. Such openness must become the rule rather than the exception, as we labor to spread the message disabled people are whole people, not objects by which we demonstrate the goodness of others.

David M. Perry is a professor of history at Dominican University and a disability rights journalist. His writing can be found at his website – How Did We Get Into This Mess? Follow him on Twitter @lollardfish