In the last post I shared both the form I needed to fill out for Pearlsky and some thoughts on it. To be clear, I fully understand the reasons behind the form, the intent and such, and it did not upset me, but it was a bit depressing in its “in your face” way. And, by the way, thank you all for your supportive comments. Here’s what I think, I think the government needs to change all such forms by adding the following instruction:
If you are as messed up as Single Dad’s Pearlsky, skip to the last page.
There, now this population will truly be included.
As for the comment about the inclusion of the word “retard,” I spent a while coming up with the proper sentence that needed to be repeated a few times. It has been pointed out to me that I should have said “mentally retarded” if in fact I was going to use that word. I have no problem with the word for several reasons. One big one is that it is used by my state and to become Pearlsky’s guardian, I had to swear in a court of law that she is “mentally retarded.” It is more than that, though. I don’t know what to replace it with. For instance, there is a big deal about the now completely socially-inappropriate word “nigger.” I understand that, especially because in the vast number of times where one may use it, if not all, a more socially accepted word, such as “black” works just as well. So if those offended by the word, those it is “aimed” at, object and there is an alternative that works and is not offensive, then it’s a no-brainer. I do not know a better term for Pearlsky’s state than “mentally retarded” (and, erroneously shortened to “retarded”) (although she is “retarded” in other ways as well) (and since her actual diagnosis is generally unheard of, it is useless to use).
But Single Dad, what about “severely disabled,” a term you have used?
Good question. But, alas, that term is a meaningless label. Yes, I use it, but what does it mean? Elizabeth refers to her Sophie as “severely disabled,” but note that Sophie can use an iPad to some extent and has interactions with her siblings. Claire does as well, she refers to her Sophie as “severely disabled,” yet she too uses an iPad and can, and does, use a few words (not to mention the title of her blog …”Life with a severely disabled child”).
Pearlsky does none of that. This is not a contest for the label, just an example that said label is not well defined. I used the word “retarded,” unfortunately without the adjectival “mentally,” because that has a precise definition. Her mental growth has been, and is, retarded, “delayed” as in “delayed in development.”
I am not trying to open up a discussion on the word, just to explain why, at least in a quasi legal situation, I use the word. In this state it is the legal term and in this small mind of mine, it is the only word with the exact definition I need.
I just find it tough at those times when her physical limitations are delineated, explained, focused on. It is the other stuff, her personality, her smile that lights up a room, her now sticking out her tongue most of the time when I ask, her unexpected but appropriate laughs, her clear blast of humor and snarkiness that sneak out, these are the things that mute, muffle, and suppress the hard realization, that yes, she has a great soul (neshama, dusha, âme, lélek, själ), and yet, she is a mentally retarded cripple.
And I adore her.