173. Flipping the Camera View

By now, most of us have read about the YouTuber Myka Stauffer and her husband, who adopted a little boy from China, and then ended up having to place him with another family because his diagnoses, including autism, were too complicated, and there was a lot of difficulty in attempting to do justice to all their children’s needs.

I saw a lot of outrage about how she monetized her child’s adoption story (she has a ton of followers and sponsors and etc). For sure as a parent who writes about autism, I think we all have to be extremely careful about not violating the privacy of children who are especially vulnerable, and who, even as they grow older, may not be able to consent meaningfully to having a public presence.

I think the general public must do some soul searching too, though. Why were so many people okay with the monetizing of her story as long as it was a positive one? If public exposure of a vulnerable child is problematic, then it is so even when the narrative is uplifting.

Not to mention that I continually see people sharing disability inspiration videos about special needs individuals. Why do we need to watch those? Can we not have special needs friends in private without making a whole altruistic scene about it? And can those friends not be merely average and have bad days, or must they always make people feel noble by their beatific smiles and prodigious talents?

I don’t know much at all about the family in question, but it seems that Ms Stauffer did try to take the spotlight off her son as the problems became more intense, and the public then began to demand information. It seems that people felt invested, like they had paid to have a window into the family’s lives, and there was a clamor, somewhat out of concern for the child, but also because they expected an ongoing return on investment.

Why point the finger at the woman who monetized her private life, without also understanding one’s own voyeuristic role, demanding a view in?

Transracial international adoptions are an ethical minefield that I shan’t weigh in on in too much detail, but I do want to say that if an adopted neurotypical child from a different culture is absorbed into a family, it is rare to see white Americans who are willing to sit with any internal discomfort about the impact of such choices. Indeed, we are more likely to be treated to dominant culture arguments and fragility. So the fact that people are outraged because THIS child’s needs were complex enough that the family couldn’t cope, is disingenuous.

Which brings me to what I want to sink my teeth into: a great many special needs families struggle intensely. All the time. And you (general you) expect us to cope. Breathe. Not demand the resources we need. Bake cookies and blog about that (hint: mine isn’t that kind of blog. And the opposite of not blogging about baking autism cookies is not negativity).

[Here, I feel like I am stating the obvious, but it comes up so often in our lives that it’s obviously needed: if you or someone else you know has a kid with milder autism needs, that’s great, but that does not qualify you to advise anyone who is parenting on the more complex end of things. As is often said, if you know one person with autism, you know one person with autism.]

Most of us, God willing, will not surrender our kids to someone else. That doesn’t make us better. But the fact that we don’t should not be the reason that we continue to be underserved, which happens even when there isn’t a prolonged shutdown due to a pandemic.

The plague in question is not our children’s diagnoses. It’s the constantly having to push against all the societal and infrastructural limitations. Blocking out tone policing. Grieving the erasure from community. Rebuffing the expectation that we serve as models of virtue. Even if I don’t identify with a Myka Stauffer, I do not want the mainstream public giving themselves a pass.

Like anyone else, we are real people. We cry over our failures. We love imperfectly.

We also soar when no one is looking. We don’t care if it’s silly to play catch with a teenager. We accept the demand to cook the same few dishes all the time, and marvel that our kids want to eat anything at all. We like our own weirdness better than yours after all these years.

But we still deserve better from our communities, and that will only happen if you turn off the preachy, voyeuristic lens you keep turning on families like ours.

Radha.

P.S. Black Lives Matter. Always.

 

 

 

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