The Teachings of Jon’s Sister

I saw a documentary called The Teachings of Jon on one of the local public tv stations in 2006. You can check out the “Teachings of Jon” website if you’d like. The documentary was still airing on PBS affiliates around the country as recently as October.

Ostensibly, the film is about how one “normal” family was transformed by the arrival of Jon, a sibling with Down syndrome, and all the great things he has taught them about life after they figure out he’s not a pain, but rather a “magical spirit.” And they do seem to be amused by Jon, much like pet owners with a naughty and active puppy. I was a little horrified by it actually.

There is something…off…about this documentary. Within 5 minutes the family had called him a “little Buddha”, referred to his “slanty eyes”, and played Asian-sounding music. Clearly, someone’s thinking “mongoloid” in all its racist, ableist, and orientalist connotations. You see, Jon’s not like us, the documentary asserts, we who are rational, accomplished, and normal. But that doesn’t mean Jon is useless! We can ignore that we poorly understand him by thinking of him as mystical, and dominate and appropriate Jon’s experiences into our own developmental narratives, where he serves the purposes of a specifically bourgeois teleology of family and career. Jon’s mom learns from Jon:

Jon catalyzed a complete change of values for our family. Before we had Jon we were part of the cocktail party set. After having Jon, things like joining the country club and keeping up with the Jones’s seemed so petty and superficial to us.

Having Jon… made us grow up.

The family insisted that they choose to include Jon fully in their lives, but the truth is that they actually had him institutionalized for the first seven years of his life; furthermore, the parents didn’t even tell their kids they had a sibling. They only brought him home after a caretaker died and they had run out of options.

In a trenchant argument about the necessity of transforming expectations for children with Down syndrome, Michael Berube blogs about the problem of overlooked potential: “And who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors?” This, admittedly, was normal at the time Jon’s family institutionalized him. They didn’t see that potential then, and their documentary is surprisingly unreflective about the fact that Jon’s severe developmental problems, including his inability to speak, were probably exacerbated by neglect for the first seven years of his life. Though they admit institutionalizing Jon was a “heart-wrenching” decision, they blame some bad advice and don’t really explore the consequences of their decision.

Their attitude about Jon’s lack of potential turns up in fascinating ways. In an interview, Jennifer Owensby, the movie’s producer, director, and Jon’s sister, says the documentary is not really about Jon after all: “My brother can’t be the main character because my brother never changes. It’s my family and the audience as they’re watching who become the main character.” Casting Jon as a an unchanging, unlearning creature has devastating consequences for Jon’s humanity. After all, even dogs can learn new tricks, and Jon himself learned sign language to communicate with them.

Berube notes that the resources made possible by the ADA Individuals with Disabilities Education Act for children with Down syndrome have themselves made transformation possible: “Early-intervention programs have made such dramatic differences in their lives over the past few decades that we simply do not know what the range of functioning looks like, and therefore do not rightly know what to expect.”

Except that Jon’s family expects that it would be best for Jon to be funny, mystical, but not a disruption. Once they figure about an unchanging routine for Jon, things go more smoothly. A particularly revealing moment came when the mother explained, “He fits right into our lifestyle.”

Admittedly, I don’t know much about living with a person with Down Syndrome, but I did babysit for three different kids who had Down. Yes, working with these kids can be delightful, but it can also be very frustrating, and the documentary didn’t deal with this aspect of their experiences at all, except to say it was difficult to get him to wear pants. In fact, it kind of seemed like the family had kind of given up on doing some of the tough things that are necessary battles for kids with Down and instead were repeatedly choosing the path of least resistance, even if it wasn’t in Jon’s best interests. That is, instead of a complex negotiation of guardianship and autonomy, they have moved from unilateral attempts to get Jon not to embarrass them to a sort of laughing permissiveness whose underlying feature is “oh he’s so cute and simple and it makes him happy!”

In fact, the whole thing seemed rather self-serving. Since I can’t remember any specific quotations from the documentary, I’ll give you an example from the website:

Before Jon came to live with us, we were just a typical family of 5. Dad was a family doctor and Mom helped him in the office.

After Jon came home to live with us, he became a central focus of the family. Jon brought our family together and we found ourselves changing to accommodate him. We became less focused on ourselves and more involved with helping each other. Because of that, we actually became more popular at school with many people expressing that our family was an inspiration to them.

There have been studies that show that siblings of people who have mental retardation are more responsible, more independent, patient and compassionate, and oftentimes assume leadership roles in humanistic fields.

Um, right.

I will also admit that you can learn a lot about yourself while working with people who have mental disabilities. But their reason for existing is NOT to teach “normal” people cute little lessons all wrapped up in bows. (If a kid with Down Syndrome is in an institution with no one to learn about life’s simplicity from him, does he make a sound?)

In fact, the author was hoping that other people would learn the sort of lesson she did about Jon, that we should be “creating a feeling [of] connection for anyone with a disability.” I’ve heard a lot of arguments about the importance of personal pathos as socially transformative, the solution to racism, homophobia, xenophobia, and I think it’s a nice idea but ultimately a crock of shit. I have a problem with the supposed goodness of good feeling, especially when it’s mostly for one’s own benefit. I think the ADA was legal precedent has been infinitely better than watching Jon’s family get a kick out of his antics.

I didn’t see any real soul-searching in this documentary, and if the family has done that, it wasn’t done in front of the camera or included in the final edit. I thought the answers they were pushing were too easy and that they didn’t even address the hard questions. They didn’t even mention that they had again become overwhelmed with care for Jon and that the family had put Jon back into a group home at the age of 30. But Jon got sick. The family’s struggle to care for Jon, according to the website, is now eased by supplemental care from two case workers from the Community Alternative Program, a medicaid waiver program that “prevents people from being institutionalized.”

Sometimes there’s a dark, patronizing side to the model of charity that The Teachings of Jon seems to promote. I suppose it’s the same problem I have with students who volunteered work with minority children in an afterschool program and then write essays I have to grade saying, “the strange little children were so delightful. I felt like I was in Anna and the King!” We have enough stories about Anna.

Bottom line: it felt dishonest and exploitative.


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2 Responses to “The Teachings of Jon’s Sister”

  1. Michael Bérubé Says:

    Hey, thanks for the trackback. One quick thing: it wasn’t the ADA (which became law in 1990)– it was the Individuals with Disabilities Education Act, from 1975, which mandates a “free appropriate public education” in the “least restrictive environment” for all children. (I believe it was originally entitled the Education for All Handicapped Children Act.) Only gradually, over the course of decades, has “least restrictive environment” been understood to mean “the regular classroom whenever possible.”

    And as for narratives in which people with disabilities exist to humanize everybody else and teach them Important Life Lessons — blecch.

  2. Mordant Espier Says:

    Thanks for the correction!

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