I have a couple of things I want to write, and that I’ve been intending to write, but this one maybe can’t wait.
Reading through twitter, I came across this article. Mind you, it’s not the first sort of article I’ve seen like it, but I had a reaction to it.
OK, I had a couple reactions to it. First, I hated the headline, because it just sounds icky and like inspiration porn may well be coming.
That really wasn’t all though. I read the article, and I thought, “I think that family’s going to be disappointed”.
Wow, I’m usually not so negative about things.
I’ve seen other articles about the next big thing that would offer some sort of sight for some kinds of blind people, and usually, I think, well now…that’s interesting. Usually, the people who benefit from these things are those who have had sight before and have lost it due to accident or to a genetic condition like RP. So what’s the deal with this one? Why the negative reaction?
Before I go on, I want to say that I hope I’m wrong. Being wrong would make me very happy, and being right would not. If these glasses are everything this family hopes they are, I will be the first (well, second maybe) to be happy for them.
There are probably several things going on here. First, I think it’s an expectations setting problem. If this kid’s sight is bad enough that he really can’t read print, I’m fairly sure that learning to do so will at least take a lot of time, at best. In any case, at least the way the story is framed, it seems they’re hoping these glasses will solve all of his blindness problems, and I’m thinking that it just isn’t so. Anyway, everything I’ve read suggests that, if you don’t learn to integrate sight when you’re very young, doing so later isn’t easy, and may even be fairly traumatic. Maybe my reaction would be less negative if this family had different expectations. I don’t know.
Anyway, I’m discussing this article with a friend who happens to be sighted, and she asks me something that I thought about just a little bit before she asked me. “Could you…perhaps….just a little bit….be jealous?”
This is indeed a possibility, and it’s a possibility I kind of hate. You see, I’m just not the brooding, bitter, jealous type, not at all. I’ve got a full life, with friends and a family. I’ve traveled, not only to many of the states, but to other countries. I’ve shared my life with amazing people, not to mention amazing animals. I’ve had fulfilling jobs. (I’ve had the soul sucking kind too. And, really, there are aspects of sight that I find, frankly, kind of frightening and overwhelming.
OK, so yes, there are things I wish I could do but can’t. I wish I could enjoy the sunsets and pictures and the silent bits in movies where everyone’s laughing uproariously and I have no clue why. I wish I could drive. I wish I could read printed things without either asking someone or relying on sometimes unreliable technology, even just to pick up any book I wanted whenever I wanted. I wish I didn’t have to work twice as hard for half the credit. But you know, these are the cards I’ve been dealt, and I’m fine with that. Usually. Most of the time.
So…Is there some jealousy there? Because this kid may have something that I likely never will? Even though it’s not necessarily something I’ve really spent a lot of time missing?
Maybe. And I hate that.
But what I hate more is that I can’t be happy for this family’s joy and hope for this new thing. And I really wish I could.
Update: oh dear. Thanks to Holly, or maybe no thanks…anyway…I read their fundraising page, and I think maybe I don’t feel so bad about feeling so bad. Actually, now I’m a little bit disgusted. Mom is saying that her son can’t, can’t can’t, can’t, can’t, unless he gets eSight glasses. Can’t use a computer, which he’ll need to do for high school. (My question is, why has he not been getting access to a computer by now? Somebody ha failed this kid.) He can’t go to college unless he gets eSight glasses. (Really? Blind people were doing that before the advent of lots of really useful technology.) And lots of other can’ts that just aren’t so. Yeah. Somebody really short changed this kid and his mother, and they apparently either don’t really know what’s possible or they’re really pulling at the heartstrings of other people who don’t know what’s possible. Sadly typical.