Follow up to previous post …
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.
Yes, the label “severely disabled” is not specific enough in many ways. When I first started writing the blog, I had a very clear image of what that was: there had to be a wheelchair, some sort of medical technology embedded in the kid, limited to no communication, 24 hour care….Over the years, my perspective has broadened to include anyone, child or adult, whose challenges are so immense as to keep them from ever being able to live without constant supervision for the rest of their life. Now I see some autistic children fall under that category, as well as those with certain extreme behavioural issues. I have no issues with “mentally retarded” except that it’s a fundamentally inaccurate term. All the legal stuff here in Ontario calls it “intellectually disabled” and I often use “cognitively disabled”. Whatever makes the paper pushers happy, I’ll write.
First, I dislike the term “delayed” as it connotes that the afflicted person will one day “arrive” at the function/ability.
Second, I choose to use the term “severely disabled” to label my son because of the one simple rule I have randomly chosen to abide by: there’s always only one school classroom/program choice in the district for him due to his profoundly lacking cognitive abilities. His wheelchair, braces, seizures, and feeding tube do not set him apart like his non-communicative, non-understanding, infant-like 75 lb body does. If his cognitive abilities were normal, I’d say he’s physically disabled or something else. I believe that is why “mentally retarded” is an important distinction that should not be eliminated and should continue to be accompanied with profound, moderate, and mild.
I just spent a couple of hours in a small room making the case that my Sophie is severely mentally retarded as opposed to moderately mentally retarded. I literally had to ARGUE about it. I wish you’d been with me —
I wrestle with the term myself. ON the one hand, I argue about how tame and lame Infantile Spasms is as a phrase, on the other I shudder to think that Bennett is going to be ‘called’ retarded. And I have no doubt he will be. Because by definition, I think that he actually is Mentally Retarded as well as PDD-NOS Lad and Brain Tumor Boy and Epilepsy Kid, but ‘They’ want us to call it Intellectually Disabled. Another softball term, but then again no one will ‘officially’ diagnose him with it either.
Which is a little fucked up. Or a lot, depending on your point of view.
I missed the mark huh? I thought your reaction would have been one of depression after a form like this. I was, what do they call that…transposing or transmigrating or being stupid? 🙂 I’m gonna play the ‘I am super sick’ card.
In California, Claire and Sophie would be called severely disabled, Pearlsky would be profoundly disabled. The same terms (mild, moderate, severe and profound) apply to mental retardation, vision loss, hearing loss and probably a lot of other things I don’t know about. I prefer “mentally retarded” to “intellectually disabled” or “cognitively disabled” the latter two just seem like big words for big words sake. All the toned down or “handicapable” language makes my skin crawl.
I think Infantile Spasms should be called something more like Neural Disruption, something that sounds scary, not something that sounds like an annoying but benign twitch.
The current UK educational system labels kids as MLD (moderate learning difficulty/disability), SLD (severe) and then for Pearlsky et al, PMLD – profound and multiple learning difficulty.
I hate it. It’s a clumsy, inaccurate system. The disabled people’s movement over here tends to go with the word impairment eg Pearlsky has a profound physical impairment, speech/communication impairment and MAY have an intellectual impairment, I have severe physical impairments, my mate K has profound intellectual impairments and is blind, etc. etc. If we’re going to use all these labels they need to be accurate otherwise it’s a huge waste of time.
If it were possible I’d prefer to describe what we need, not what we are.
I won’t use the term because it hurts too many people. Many of those people it hurts are those who are not so severely mentally disabled that they do not know that how certain words that describe their situation have become insults hurled at themselves and others. Or they can be loved ones of such folks. I will find other words to spare their feelings.
her now sticking out her tongue most of the time when I ask
“If it were possible I’d prefer to describe what we need, not what we are.” Good one, Becca.
I disagree, Kandee. ‘Delayed’ does not imply ‘eventually’ but means ‘possibly – later’. I have seen too many children where ‘delayed’ was interpreted as ‘never’ and efforts to promote their development ceased. We live in a culture of expected immediate or quick response. If it does not come, many walk away (figuratively). Parents of young children with development-altering diagnoses benefit from the term ‘delayed’ for maintaining the strong emotional strength it takes to use other more stressful words later to garner support for their child’s “needs”. And to know that one day, their child might stick her tongue out at them.
Well done, SD.