Yes, I'm A Killjoy

Elizabeth Plank, PolicyMic - March 26, 2014

It's getting to the point where I think I know a little of what it must be like to be a feminist ... compelled to ask uncomfortable, confrontational questions just when everyone is having a good time.

I had a strongly emotional reaction to this story, which has been making the rounds of first British, and now American newspapers and websites. But not the kind of emotional reaction one might think. I mean, who can resist that lovely photo, right?

Once I finally read the article, my first reaction was to be very upset. Not just intellectual disagreement upset, but personally upset. It seemed to me that either the article's writer, or the Upsee company, or both, were saying that the great thing about this Upsee invention is the joy it gives the parents to see their disabled kids "walk" and look more normal. This, despite the fact that compared to an operable wheelchair, crutches, or a walker, this device makes the child more dependent for mobility on their parents, not less.

Also, the article itself, when I read it, led with inflammatory language like "bound to a wheelchair," some of which I think have since been removed, though the tone of story is basically the same. Parents are "devastated" by their children being disabled, possibly having to "spend their life in a wheelchair." Then along comes this clever invention that allows their kids to "play like other children." Whether intentional or not, there's a lot of emphasis on how great the parents feel, a little less on the practical use of the Upsee, and nothing at all about how the kids feel about it ... or will feel about it when the novelty wears off and they realize they are still, literally, tied to Mom and Dad.

On further investigation, in particular having a look around the company's website, I do see that the Upsee has two other, more substantial uses. One, it is apparently a good tool for physical therapy, and may lead to permanent physical improvements that can result in greater long-term independent mobility. As a person who might well have "spent my life in a wheelchair," if not for aggressive surgery and physical therapy in childhood, I can't really argue with such a goal or results.

The second benefit I see, though, is barely mentioned ... and that is that the Upsee looks like a very flexible, multi-use mobility device / carrier for very young disabled children. For really little kids it's probably more functional than a wheelchair. It also reminds me of the jury-rigged contraption my parents and a local bike shop "invented" for me when I was very young and had two legs in a cast. I'm all for devices that make it easier for parents to care for very young disabled children, and this Upsee looks like a great example of that.

But back to what upset me initially, and still does. It is the implication that this thing is the answer to a very particular kind of parents' prayer ... "Please let my child be more like other kids." This is a wish I cannot bring myself to oppose, but which really does wound me at the very core of my being. Whenever someone or something seems to confuse real, functional improvement with symbolism and masking of difference, it upsets me.

What worries me, too, is the children who will never be able to walk independently, with or without an Upsee. Will they go through an even longer phase now when they crave the appearance of normalcy over functional mobility? As it is, children and youth with disabilities waste years trying in vain to walk and talk and act "normally", often while letting more practical mobility skills and tools gather dust.

The Upsee looks promising, but there are so many basic questions to be asked, and everyone seems to be too busy cooing over the cute kids and their parents to think of asking.

Like I said, I'm a killjoy.